a retrospective exploration of the experience

1 A RETROSPECTIVE EXPLORATION OF THE EXPERIENCE

A Retrospective Exploration of the Experience, Interpretation and Perception

of Growth in Parents of Young Adults

Diagnosed with Autism Spectrum Disorder

By Victoria Grinman

A dissertation submitted to the graduate faculty in

partial fulfillment of the requirement for the Degree of

Doctor of Philosophy in Social Work

Roni Berger, PhD., Faculty Advisor

Committee Members: Patricia Joyce, DSW Laura Quiros, PhD Elisabeth Counselman-Carpenter, PhD

Adelphi University, School of Social Work Garden City, New York

Fall 2020


ABSTRACT

This qualitative study was informed by Posttraumatic Growth Theory and used Narrative

Analysis to explore retrospectively the lived experiences, interpretation and perception of growth

in parents of young adult children diagnosed with Autism Spectrum Disorder (ASD). Parents in

previous research reported, in addition to the stress and challenges, also experiencing growth and

finding benefits from their parenthood journeys. The research on this duality of stress and growth

in this population is extremely limited, specifically looking at it retrospectively. This study utilized

semi-structured in-depth interviews to document the experiences of a purposive sample of 16

parents raising a child with Autism Spectrum Disorder. The in-person interviews were digitally

recorded and for parents living in another state, interviews were video recorded. All interviews

were transcribed and analyzed to identify common themes that capture the participants’

parenthood journey, its challenges and benefits. Three primary findings of the study are that

parenting children with ASD to young adulthood involves multilayered compounding stress and

negative experience; the parenting process also generates posttraumatic growth (PTG) and other

positive effects; and that parents rearing children with ASD involve unique coping mechanisms,

which include collaborative parenting style and the ASD family unit. Implications for social work

theory, practice, education, policy and research are offered.


TABLE OF CONTENTS

ACKNOWLEDGEMENTS

ABSTRACT__________________________________________________________________2

TABLE OF CONTENTS

_______________________________________________________3

CHAPTER 1: FOCUS OF INQUIRY ____________________________________________ 6

CHAPTER 2: CRITICAL REVIEW OF THE

LITERATURE________________________9

Conceptual Framework___________________________________________________10

Critical Review of Empirical Literature _____________________________________ 15

Experiences of Parents in General ___________________________________ 16

Factors that shape parenthood._________________________________ 17 Effects of parenthood and their correlates.________________________18 Experiences of Parents of Children with Chronic Illnesses and/or Disabilities _ 21

Factors that shape experiences of parents of children with chronic illnesses or/and disabilities. __________________________________________ 23 Effects of parenting children with chronic illnesses or/and disabilities._ 25

Experiences of Parents of Children Diagnosed with ASD __________________29

Factors that shape experiences of parents of children with ASD. ______30 Effects of parenting children with ASD and their correlates. _________ 32

Summary of Empirical Findings ___________________________________________ 37

CHAPTER 3: METHOD _____________________________________________________ 37

Research Constructs ____________________________________________________ 37

Study Design and Method________________________________________________ 38

Population, Sample, and Sampling_________________________________________ 39


Data Collection ________________________________________________________ 42

Trustworthiness _______________________________________________________ 45

Data Management and Analysis ___________________________________________ 46

Ethical Considerations __________________________________________________ 48

Study Limitations _______________________________________________________49

CHAPTER 4: FINDINGS (51)

Multilayered Compounding Stress and Negative Experiences of Parents of Children with ASD

____________________________________________________________________________51

Challenges/ Stressors Related to Parenting in General __________________________52

Challenges/ Stressors Related to Parenting a Child with Chronic Illness/Disability____55

Challenges/ Stressors Related to Parenting a Child with ASD____________________ 58

Compounding Nature of Stressors __________________________________________78

Negative Effects on Parents Rearing Children with ASD ________________________78

Posttraumatic Growth (PTG) and Other Benefits of Parenting a Child with ASD ___________89

New Possibilities _______________________________________________________ 89

Appreciation of Life ____________________________________________________ 92

Personal Growth and Strength ____________________________________________ 95

Relating to Others ______________________________________________________ 96

Spiritual Change _______________________________________________________ 97

Being a contribution to other parents with children with ASD. ___________________ 98

Appreciation of the study as a benefit _____________________________________ 100

Coping of Parents Rearing Children with ASD, Factors that Facilitate Coping, and ASD Family

Unit ______________________________________________________________________ 100


Coping Strategies _____________________________________________________ 101

Factors Facilitating Parents’ Coping _______________________________________105

ASD Family Unit ______________________________________________________111

CHAPTER 5 - DISCUSSION _________________________________________________114

Implications of Findings ________________________________________________ 134

Implications for Social Work Theory ______________________________________ 134

Implications for Social Work Practice ______________________________________138

Implications for Social Work Policy _______________________________________ 144

Implications for Social Work Education ____________________________________ 149

Implications for Social Work Research _____________________________________152

REFERENCES _____________________________________________________________158

LIST OF TABLES

Table 1: Socio-demographic Characteristics of Study Participants _________________41

LIST OF FIGURES

Figure 1: A Comprehensive Model of PTG ___________________________________12

Figure 2: Challenges experienced by parents of children with ASD_______________ 116

Figure 3: Evolving/ budding/ cascading PTG in parents of children with ASD______ 124

APPENDICES _____________________________________________________________ 217

Appendix A – Recruitment Flyer __________________________________________217

Appendix B – Interview Guide____________________________________________218

Appendix C – Consent Form_____________________________________________ 221 ADDENDUM______________________________________________________________ 223


Chapter 1: Focus of Inquiry

This research question is important because of its potential short- and long-term impacts

on individuals, families, communities, and society at large, and because of the number of people

impacted.

ASD is a neuro-developmental disorder characterized by deficits in social communications

and social reciprocity, nonverbal communicative behaviors, and skills needed to initiate, maintain

and understand relationships, as well as stereotyped and repetitive patterns of behaviors (e.g., head

banging, flipping objects, or use of idiosyncratic phrases) or interests (e.g., strong attachment to

or preoccupation with unusual objects) (APA, 2013). ASD differs from other developmental and

chronic childhood disorders because of its multifactorial origin, attributed to a combination of

genetic, metabolic or bio-chemical, and neurological factors, as well as the fact that ASD

represents an umbrella for various separate disorders and syndromes such as Rett syndrome,

Asperger’s syndrome and autistic disorder (Faras et al., 2010). ASD is not easily categorized as a

genetic disorder (as is Down syndrome, DS), or as a biological/anatomical disorder (as in brain

malformations), and it is not a definite metabolic/ nutritional disorder (such as childhood diabetes).

Because symptoms of ASD are not static and predictable, the experience of parenting children

with ASD is unique and difficult to adjust to (Huws, Jones, & Ingledew, 2001; O’Brien, 2007). It

is difficult to “see” ASD or its manifestation in public, yet behaviors associated with the diagnosis

are usually overt, visible and often misunderstood, as it is often assumed that they are the result of

bad parenting (Neely-Barnes, Hall, Roberts & Graff, 2011). This stigma results in exclusion,

stereotyping and rejection, further complicating the parenthood experience and potentially

contributing to parents’ and families’ insurmountable challenges in raising a child diagnosed with


ASD, especially when children integrate into the larger social context (Kinnear, Link, Ballan &

Fischbach, 2016).

Estimates of the prevalence of ASD differ depending on the diagnostic criteria used,

particular country’s socio-economic status, the state of healthcare and child services, social

awareness of and stigma related to ASD, and the methodologies employed (Baio, Wiggins, et al.

2018; Mandell et al., 2002; Tek & Landa, 2012). For example, prevalence of ASD was estimated

at 18.75/10,000 in Northern European countries, 11.6/10,000 in Western Pacific/ South Asia

region, and 65.5/10,000 in the United States (Elsabbagh et al., 2012; Hughes, 2011). ASD is

considered the second most common serious developmental disability next to mental retardation

or intellectual disability (Newschaffer et. al., 2007). As per CDC, the number of children diagnosed

with ASD in the United States has increased consistently (by 123% since 2002, 64% since 2006

and 29% since 2008) regardless of racial, ethnic and socioeconomic affiliation; thus, the number

increased from one in every 68 (1.5%) children in 2014 to one in every 59 (1.7%) in 2018 (CDC,

2014, 2018). This increase in prevalence has been attributed to changes in strategies for

identification, diagnosing and serving children, as well as increased awareness of doctors, teachers

and parents (CDC, 2014).

As the number of children diagnosed with ASD grows exponentially, it generates much

higher demands for social work and mental health services for parents, caregivers and families,

who are impacted by the condition, and requires the development of more comprehensive

knowledge about all aspects of the experience.

Research related to the experience of parents of children diagnosed with neuro-

developmental disorders (ND), specifically ASD, has focused on hardships in raising children with

ASD (O’Brien, 2007; Reichow, 2012; Warren, et al., 2011; Baker & Drapela, 2010; CDC, 2014),


ambiguous loss and grief (Boss, 2009; O’Brien, 2007), negative short- and long-term mental health

outcomes, such as psychological distress, depression, and PTSD symptoms (Benson, 2010; Bitsika

& Sharpley, 2004; Boyd, 2002; Casey et al., 2012; Hayes, & Watson, 2013; Khamis, 2007; Pozo

& Sarria, 2015; Walsh, Mulder, & Tudor, 2013) and the overall wellbeing and its correlates (Myers

et al., 2009; Pozo & Sarria, 2015; Resch, Benz, & Elliott, 2012 a).

Studies of positive outcomes of parenting a child diagnosed with ASD addressed parental

positive perceptions, experiences, and benefits finding (Kayfitz, Gragg, & Orr, 2010; Markoulakis,

Fletcher, & Bryden, 2012), coping (Dabrowska, 2010; Lyons et al., 2010; Wang et al., 2011),

resilience (Bekhet, et al., 2012; Easterbrooks, et al., 2011) and growth (Strecker, Hazelwood, &

Shakespeare-Finch, 2014; Zhang, Du, et al., 2013; Zhang, Yan, et al., 2013). Only a handful of the

studies of the quality of parental experience raising children with ND/ASD addressed both positive

and negative aspects (Landsman, 2003; Larson, 1998; Myers, et al. 2009; Phelps, Hodgson,

McCammon, & Lamson, 2009a).

While existing studies looked mostly at parental experiences related to times when children

are still young, from toddlers (Kozlowski, Matson, Horovitz, Morley, & Neal, 2011) to young

children and adolescents (Smith, Seltzer, Tager-Flusberg, Greenberg, & Carter, 2008), only a few

studies examined experiences of parents of young adults with ND/ASD (Pozo & Sarria, 2015).

This study captures the “holistic” experience of parents with children with ASD, rather than “in

the moment”/ child age-specific experience. Further, most studies of parental experience of raising

children with ASD were observational, and included the cross-sectional (Estes, Munson, Dawson,

Koehler, Zhou, & Abbott, 2009; Manning, Wainwright, & Bennett, 2011) or longitudinal (Gray,

2002; Gray & Holden, 1992; Lounds, Seltzer, Greenberg, & Shattuck, 2007) analysis of such

experiences. There are just a few studies that looked retrospectively at the experience of parenting


of children with ASD (Casey, et al., 2012); however, these studies did not focus on retrospective

cumulative and positive/transformative experiences of these parents, especially after their children

are grown. Further, most available research addressed the overall negative and positive

experiences utilizing various scales for identifying the growth (Ambrus, 2019), whereas this study

focused on the perceived self-reported positive/post-traumatic growth experience of parents after

their children became young adults as a result of their struggle due to experiences of parenting of

a child with ASD.

The present study is important because no previous research has looked at the parenthood

journey from the perspective of layers of the experience capturing the duality of trauma (stresses

and benefits), thus, it is expected to broaden and deepen the understanding of the experiences of

parents raising children with ASD who have found benefits from their experience and can share

from a perspective of looking back on their journeys. Findings from this study are anticipated to

enhance the understanding of the benefit finding and growth that parents self-identify in retrospect,

after their children enter adulthood and allow deeper appreciation of the struggle and the

experience of parents with children diagnosed with ASD by clinicians, and the development of

strength-based and expert companion (Calhoun & Tedeschi, 2006a) strategies and interventions to

support these parents and families and to fostering growth efficiently.

Chapter 2: Critical Review of the Literature

This chapter includes a discussion of the conceptual framework that informs the study

and a critical review of empirical knowledge related to this inquiry.

Conceptual Framework


This study is informed by the model of posttraumatic growth (PTG), which was developed

by Tedeschi and Calhoun (1995, 1996, 1999) to address positive psychological changes that some

people experience as a result of the struggle with challenges brought up by the exposure to a

traumatic event. PTG has been considered both a process and an outcome (Zoellner & Maercker,

2006), of the cognitive-behavioral processing of the traumatic event, which had caused

psychological and emotional distress by challenging the status quo, beliefs and goals, assumptive

worldview, and interruption of the life narrative of individuals, couples, families or communities

(Berger, 2015; Berger & Weiss, 2009; Janoff-Bulman, 1992; Tedeschi & Calhoun, 1999, 2006).

Acknowledgement and fostering of growth is valuable in clinical and supportive services settings,

as these can allow people to live a life with more meaning and prepare them for handling later

events in life with more ease (Janoff-Bulman & McPherson Frantz, 1997).

The original theoretical PTG Model included broad categories of growth that included

three general domains: (1) changes in the perception of self, (2) changes in the experience of

relationships with others, and (3) changes in one’s general philosophy of life (Tedeschi & Calhoun,

1995). After factor analysis of data collected in the US, the PTG Model was modified to include

five main domains of growth: (1) seeing new possibilities, (2) relating to others, (3) personal

strength, (4) spiritual change, and (5) appreciation of life, although the authors allowed changes

beyond this common core specific to the struggle with particular stressors (Tedeschi & Calhoun,

1996). Although the phenomenon of PTG is universal, the specific number and types of domains

are culture-dependent, as the fundamental components of values, relationships, beliefs, self-

perceptions, as well as the meaning of stress, crisis or growth differ among cultures (Ho & Bai,

2010; Splevins, Cohen, Bowens, & Joseph, 2010; Tedeschi, Cann, & Calhoun, 2010; Wagner &

Maercker, 2010; Weiss & Berger, 2010).


While there is consensus that resilience and PTG are related, there are diverse views

regarding the nature of the connection. Some describe PTG as an aspect of resilience (Szanton,

Gil, & Thorpe, 2010), i.e. the ability to recover or rebound to a pre-trauma state; others suggest

that resilience and PTG are different (Steele & Kubin, 2011), as PTG is the perceived growth

which manifests through characteristics not present prior to traumatic experience (Turner & Cox,

2004); and others view resilience and PTG as different and curvilinearly (Tedeschi & Calhoun,

2004) or negatively (Shilling, 2012; Zerach, Solomon, Cohen, & Ein-Dor, 2013) correlated.

Figure 1 presents the key elements of the PTG model that was proposed originally by

Calhoun and Tedeschi in 1996, and which incorporated the changes proposed later to the original

model (Calhoun & Tedeschi, 1998; 2004).


Figure 1

A Comprehensive Model of PTG

Note. From “Handbook of Posttraumatic Growth: Research and Practice,” by L.G. Calhoun and

R.G. Tedeschi, 2006, p.8.

The cognitive process of PTG as depicted in figure 1 begins with a person pre-trauma,

with all their individual differences and culturally influenced assumptive world beliefs. As per

this model, the person pre-trauma experiences a seismic (potentially disruptive) event, and the

characteristics of this event (such as high magnitude that disturbs the status quo, high threat to the

assumptive world, nature- or human- made) that challenge one’s assumptive beliefs, which leads


to disruption of the goals or/and life narrative (Berger & Weiss, 2009; Calhoun & Tedeschi, 2013).

This may cause emotional distress and include affective, cognitive, social and somatic components

(Berger, 2015; McCubbin, Thompson, & McCubbin, 1996). When a stressor disrupts the narrative

so much that the person conceptualizes the event as dividing life into a “pre” and “post” event, it

can initiate rumination, which is a process of cognitive engagement aimed to make sense of the

event, while making possible changes in cognitive schemas. Through rumination, one gets

involved in self-analysis and self-disclosure, and management of emotional distress, with distal

and proximal socio-cultural influences, and possibly achieves PTG (Calhoun, Cann, & Tedeschi,

2010; Weiss, & Berger, 2010). Two types of rumination are described in PTG model: an intrusive/

automatic, “brooding” rumination directly following the event and, later on, a deliberate,

reflective, constructive, meaning-making reflection, reorganization of global beliefs, and

reconstruction of a more complex life narrative (Calhoun & Tedeschi, 2006; Nolen-Hoeksema &

Davis, 1999; Zoellner & Maercker, 2006). This cognitive processing allows the development of a

worldview from a different perspective and potentially achieving PTG (Joseph & Linley, 2008).

Continued intrusive and deliberate rumination were proposed to be predictive of PTG, and the

level of intrusive rumination is predictive of the level of deliberate rumination (Cann et al., 2010;

Xinchun, Xiao, Yufei, & Yuanyuan, 2015). PTG tends to occur more likely when the person is

involved in deliberate rumination with a wide variety of content, realization that the “seismic

event” did happen, and there is a lag of time between the event and appreciation of what happened

(Calhoun & Tedeschi, 2006). There is a positive relationship between the level of one’s cognitive

engagement with various elements of life crisis and the level of PTG (Linley & Joseph, 2004;

Manne et al., 2004).


Individual or systemic differences prior to the traumatic event, such as personality, gender,

dispositional attributes (optimism, hope, extraversion, openness, creativity, self-efficacy),

assumptive world-view (i.e. the general set of beliefs the person has about the world, how it works

and one’s place in it), and personal resources (income, education, religiosity, spirituality) influence

the likelihood and amount of possible subsequent PTG (Berger & Weiss, 2009; Calhoun &

Tedeschi, 2013). Socio-cultural influences i.e. aspects of the environment can influence both the

assumptive worldviews and possible growth. Proximal and distal influences may impact on the

kind, frequency and amount of social support and the social context within which people live.

Proximal influences include social support, role models, support for schema/narrative change, and

PTG. Proximal influences are people, groups and smaller social networks that the individual

interacts with, such as family and close friends, religious groups and congregations, a gang or a

team. Distal influences are the broader themes of connection that the individual is influenced by

such as societies, cultures, and countries (Calhoun & Tedeschi, 2004, 2013). There are three

important elements of the proximal influences: responses of important others to disclosures related

to trauma, congruence of the traumatized person’s ruminations with the thoughts of significant

others regarding the traumatic situation, and presence of models of PTG (Calhoun & Tedeschi,

2004). This PTG model was initially conceptualized as exclusively related to individuals, but later

expanded to include groups, families, and communities (Berger & Weiss, 2009; Tedeschi,

Shakespeare-Finch, Taku, & Calhoun, 2018).

The aforementioned elements in the universal PTG model translate in the context of this

research as follows. The pre-trauma characteristics are parents’ individual differences, cultural

influences, and assumptive world beliefs about what the experience of raising their child would be

prior to the point of receiving the ASD diagnosis. The potentially disruptive event refers to


receiving the ASD diagnosis of one’s child and all other diagnosis related issues, such as lengthy

process and late ASD diagnosis, insufficient or no early services, and societal stigma related to

child’s atypical behaviors. This potentially disruptive event challenges the parents’ life narrative

and their beliefs about parenting and the future, and together with “ambiguous loss” (O’Brien,

2007), may cause emotional distress. Parents’ emotional distress is getting processed through

ruminations, which are at first mostly automatic/ intrusive, and then – deliberate/ reflective/

constructive ruminations that help parents to revise and reconstruct their life narrative. This leads

to acceptance of the new/ changed world, recognition of strength, resources, possibilities, and

retrospectively potentially finding benefit from parenting a child with ASD diagnosis, as well as

increased wisdom, well-being, life satisfaction, and finding joy from the parental experience and

from being a contribution to others.

Critical Review of Empirical Literature

The experience of parents of children diagnosed with ASD is unique, as it encompasses

the experiences of parents in general, experiences of parents of children with chronic illnesses

and/or disabilities in particular, as well as specific experiences of parents of children diagnosed

with ASD. Empirical literature often uses the terms “parenting” and “parenthood”

interchangeably; parenting represents the process of rearing of the child (Ruddick, 1979) and

parenthood as the status of being a parent (vs. being childless) (Umberson, Pudrovska, & Reczek,

2010), i.e. the whole gamut of experiences of the parents as individuals and in their relationships.

In this review, the concept “parenthood” will be used to define the experiences of parents during

the process of being a parent.

Available empirical literature documented the stressors/ factors that shaped parenthood,

which can be grouped as the experiences of parents in general, experiences of parents of children


with chronic illnesses or disabilities, and experiences of parents of children with ASD specifically.

Due to the “circularity” of the concepts of parental, family stressors and responses to stress, in

some cases, it is almost impossible to distinguish the stressors from the effects (Smith, 1984). This

circularity is observed when the source of stress is not inherent in the stressor, but is a part of

parents’ reactions to stress, including interpersonal conflicts and extended family and society

related factors that are initially not obvious (McCubbin et al., 1980).

Experiences of Parents in General

Parenthood is a developmental phase that undergoes constant revisions due to personal and

societal influences (Benedek, 1959; Erikson, 1956; Schor & AAPTFF, 2003). The need to be a

parent was placed by evolutionary psychologists on the top of the revised pyramid of human needs,

mostly because of biological motivation for reproduction of one’s genes (Kenrick, Griskevicius,

Neuberg, & Schaller, 2010; Finkel & Eastwick, 2015; Segers, Pennings & Mertes, 2019), even

though some people make a choice to remain childless, cannot conceive or are childless not by

choice. Individuals who become parents experience first the challenges of the transition to

parenthood, which lasts about a year after the first child is born (Crnic, Gaze, & Hoffman, 2005;

Crouter & Booth, 2003). Having a child (especially the first one) was ranked as the sixth out of

102 stressful life events (Deater-Deckard, 2004; Dohrenwend et al., 1978). During the transition

to parenthood, both mothers and fathers find themselves “living in a new and overwhelming

world” (Nyström & Ohrling, 2004, p.319).

The transition to parenthood is considered a transformative psychological experience that

involves stresses and a consequent combination of negative and positive effects (Doss et al., 2009;

Huston & Holmes, 2004; Nomaguchi, & Milkie, 2003; Nyström & Ohrling, 2004; Umberson et

al., 2010). Parents provide social support, socialization, and life skills for their children for a


prolonged and constantly increasing amount of time, leading them to experience a mix of positive

and negative effects of parenthood throughout their lives (Cherlin, 1988; Sandberg & Hofferth,

2001; Schor & AAPTFF, 2003). This section will discuss the empirical studies of parents in

general, specifically the knowledge about factors that shape parenthood, and effects of parenthood

and their correlates.

Factors that Shape Parenthood. Biological, socio-economic, and parent-, family and

child- related factors shape parenthood. Biological factors include Maslow’s (1970)

needs/motivations for reproduction, actualization, belonging, and the need for creativity and

improving the world for future generations (Griskevicius et al., 2006; Kenrick et al., 2010). Socio-

economic factors include financial strains when people become parents (Nelson et al., 2013) as

well as resources and social support to families, social policies related to paid work leaves, work

flexibility, and childcare (Feldman, Sussman, & Zigler, 2004; Glass et al., 2016). Parent related

factors include parent’s gender (Katz-Wise, Priess & Hyde, 2010; Santtila, et al., 2008), marital

status (Evenson & Simon, 2005; Knoester & Eggebeen, 2006; Nomaguchi & Milkie, 2003),

race/ethnicity (Coles, 2009; Lu, 2006; Nilaweera et al., 2014), prior relationships and attachment

styles (Rholes, et al., 2001), and participation in workforce (Goldberg & Perry-Jenkins, 2004).

E.g., mothers and fathers have different challenges during the transition to parenthood, mostly

related to the typical unbalanced division of parental responsibilities where mothers carry most of

the child’s care, while fathers take on the role of the provider and defender (Nyström & Ohrling,

2004). Family related factors include socioeconomic status (Goldberg & Perry-Jenkins, 2004;

Koropeckyj-Cox et al., 2007), immigration and acculturation status (Bornstein & Cote, 2006;

Nilaweera et al., 2014). Parents of lower socio-economic status experience financial hardships that

lead to inconsistent discipline by both parents, decrease in parental nurturance (Lempers, et al.,


1989), loss of mutual parental respect (Conger et al, 1990), and more frequent child abuse referrals

(Gillham et al., 1998). Other family related factors are parental cohesion, loyalty, and commitment

(Lawrence et al., 2008), and re-evaluation of roles and responsibilities (Grote & Clark, 2001; Farr,

& Patterson, 2013; Fennie, 2001), with family structure playing the major role (Avison et al., 2007;

Hofferth & Goldscheider, 2010). Relevant family structure aspects include family composition

and parental roles such as single parenthood (Olsson & Hwang, 2001), teenage parenthood

(Haveman & Wolfe, 1994; Manning et al., 2004), cohabitation before marriage (Kamp Dush et al.,

2003; Stanley et al., 2004; Stanley et al., 2006), stepparenthood or dual parental roles (Pace &

Shafer, 2015; Umberson et al., 2010), and the residence of a biological or stepchild (Ganong &

Coleman, 2004; Umberson & Gove, 1989). Other family circumstances include adoptive

parenthood (Goldberg & Smith, 2014; Salcuni et al., 2015), same sex parenthood (Cao et al., 2016;

LeBlanc et al., 2015; Frost et al., 2016), as well as the skipped generation of grandparents raising

grandchildren in the absence of parents (Fields, 2003; Hughes et al., 2007), or the sandwich

generation of individuals that are involved in care of their elderly parents and their children at the

same time (Pierret, 2006; Schor & AAPTFF, 2003). In the literature, the above family composition

structures have been referred to as non-traditional (Holden, 2014). While this is the terminology

used to date, it offers a judgmental and hierarchical versus a pluralistic language that is non-

inclusive (Allen, et al., 2000; Amato, 2000). Child related factors include child’s age (Evenson &

Simon, 2005; Kluwer & Johnson, 2007) and demands related to child care (Doss et al., 2009;

Goldberg et al., 2010; Schor & AAPTFF, 2003).

Effects of Parenthood and Their Correlates. Parents experience a mixture of negative

and positive effects that can coexist and can interfere with functioning, but also provide parents


with the opportunity to cope, be resilient, and thrive (Berger, 2015). Most studies of parenthood

concentrate on particular effects or their combinations, and their correlates.

Negative Effects. Parenthood in general may produce a multitude of negative effects

(Glass, Simon, et al., 2016), and most studies concluded that “people are better off without having

children” (Hansen, 2012, p. 29). Parenthood in general may produce individual and relational

negative effects, which may impact the effectiveness of parents’ coping skills and parenting styles.

Individual effects are related to parental emotional well-being and parental health. Parenthood is

negatively associated with parental emotional well-being (Gilbert, 2007; Glass, 2016; Hansen,

2011; McLanahan & Adams, 1989; Nomaguchi & Milkie, 2003; Ross & Van Willigen, 1996;

Simon & Nath 2004; Umberson & Gove, 1989), especially during the phases of transition to

parenthood (Blegen et al., 2014; Evenson & Simon, 2005; Kahneman, et al., 2004; McLanahan &

Adams, 1987; Umberson et al., 2010) and the “empty nest” (Evenson & Simon, 2005; Milkie,

Bierman, & Schieman, 2008; Koropeckyj-Cox, 2002; Pudrovska, 2008). Parenthood is also

associated with increased health risk for chronic medical (Wickrama, et al., 2001) and mental

health conditions like depression (Evenson & Simon, 2005), especially for single women with

children (Avison, et al., 2007; Goldberg, et al., 2010), teen parents (Henretta, 2007; Spence, 2008;

Taylor, 2009), and women with short maternity leave (Feldman, Sussman, & Zigler, 2004).

Parental sleep problems, including sleep deprivation and depression, feed and potentiate each other

(Bhati & Richards, 2015; Saxbe, et al., 2016), and may cause transmission of depression within a

couple such that depression in one of the spouses can predict depressive symptoms of the other

(Cameron, et al., 2016; Saxbe et al., 2016). Postpartum mental health disorders are very prevalent

(Paulson, et al., 2006; Smith, et al., 2016), with a risk of 40%, and actual diagnosis in 10-15% of

all mothers (Lawson, et al., 2015).


Relational effects pertain to marital, social, and parent-child relationships. Marital

relationships experience significant abrupt and lasting adverse change, especially during the

transition to parenthood (Knoester & Eggebeen, 2006; Huston, & Holmes, 2004), and marital

satisfaction decrease (Twenge, Campbell, & Foster, 2003), which also reflects transgenerational

transmission of marital dissatisfaction related to parenthood (Perren et al., 2005). For people who

became parents, the overall social relationships (Lang et al., 2006; Lawrence et al., 2009; Provost,

& Tremblay, 1991) and contact with friends decline (Kalmijn, 2012; Rözer et al., 2016), especially

in people who became parents early in life (Rözer et al., 2017) or those with prior problems with

attachment (Rholes et al., 2001; Simpson, et al., 2003). The negative effect of the decline can be

buffered by premarital ability of parents to be resilient, adapting to challenges, and have conflict

management strategies (Cast, 2004; Kluwer & Johnson, 2007; Shapiro et al., 2000). Parent-child

relationships can be negatively affected by parenthood stresses, parental coping skills and

parenting styles. E.g., harsh parenting strategies cause intense emotional reactions of their children,

and these in turn further inform parental coping skills and negatively affect the well-being of

parents and children (Fabes et al., 2001; Knoester & Eggebeen, 2006), due to circularity principle

described above.

Positive Effects. Studies that compared parents with non-parents reported that despite all

the aforementioned negative effects of parenthood, parents experienced “momentary” or

“global” positive effects of parenthood (Keizer et al., 2010; McAdams, 2001; Rothrauff &

Cooney, 2008) and concluded that “children are associated with happiness and meaning rather

than with misery” (Nelson et al., 2013, p. 2). In some studies, parents reported higher satisfaction

with activities of child care, when compared with other daily activities (Kahneman et al., 2004;

Nelson et al., 2013).


Positive effects of parenthood are increased parental well-being (Umberson, Pudrovska, &

Reczek, 2010), improved parental health and mental health (Nelson et al., 2013) and increased

purpose, gratification and reward, appreciation of life, feeling of satisfaction and meaning of life

(Nelson, et al., 2013; Russell, 1974; Umberson & Gove, 1989; White & Dolan, 2009). Parental

gender, marital status, and age moderated the increased global and moment-to-moment parental

well-being effect (Nelson et al., 2013; WVS, 2006); e.g., parents reported frequent thoughts about

meaning, but only fathers showed increased happiness and satisfaction with life (Nelson, et al.,

2013). While all parents, irrespective to their marital status, reported increased happiness and

satisfaction with life, unmarried parents showed less satisfaction with life than their married

childless counterparts. Age of parents affected their life satisfaction, with relationships more

positive for older parents, but not happiness or thoughts about the meaning of life. Feeling of

satisfaction and increased life meaning in parents were confirmed by multiple studies (Nelson, et

al., 2013; Russell, 1974; Umberson & Gove, 1989; White & Dolan, 2009), some of them showing

that parents ranked childcare as the highest among other daily activities (Kahneman et al., 2004).

Improved parental health and mental health signs, such as feeling of happiness, depressive

symptoms and more positive emotions during the day activities were correlated with being a

mother, in comparison with their married or single childless peers (Nelson et al., 2013).

Experiences of Parents of Children with Chronic Illnesses and/or Disabilities

Chronic illness of children imposes wide-ranging impacts on their parents (Muscara, et al.,

2018). Childhood chronic conditions may exert greater psychological and physical stress than

acute illnesses that resolve quickly (Martin et al., 2009), mostly as a “consequence of processes of

allostatic load that include the physical and psychological wear and tear associated with prolonged

or repeated demands that characterize chronic stress” (Compas et al., 2012, p.2; Juster et al., 2010).


Experiences of parents of children with disabilities or chronic illnesses are shaped by

greater or additional stresses than parents of children without disabilities (Affleck & Tennen, 1993;

Baker-Ericzen et al., 2005; Dellve et al., 2006; Dyson, 1996; Florian & Findler, 2001; Muscara et

al., 2015; Turnbull et al., 1993; Yamaoka et al., 2015). These stresses include the need to

restructure family’s finances, invest time and efforts in finding medical and support resources, and

redefine each family member’s role, which present greater challenges for parents of a child with a

disability (Compas et al., 2012; Daire et al., 2011), especially for mothers (Olsson & Hwang,

2001). The experience of these parents was found to be of a compounding nature (Compas et al.,

2012; Daire et al., 2011; Harrison & Sofronoff, 2002; Hughes, 1999; Scherzer, 1999).

The literature is peppered with confusion regarding chronic illness and disability. While

no common criterion for childhood chronic illnesses exists, they share at least three major features,

i.e. prolonged duration, no spontaneous resolution, and rarely complete cure (Stanton et al, 2007).

Multiple perspectives on disability include the ones focusing on chronic health conditions, or

higher than normal health risks; and/or the limitations imposed on regular life activities by various

chronic healthcare needs (HRSAMCHB, 2013). Because of this confusion, some authors preferred

the concept of “other-then-normal” children (Nelson, 2002). In addition to the absence of definite

criteria of chronic illness or disability, the relevant research employed methods that vary, resulting

in inconsistent and sometimes contradicting ranges in prevalence rates of the proportion of children

with one or more chronic medical conditions (Newacheck, 1992). Some epidemiologic studies

state that one in every four American children (25 percent) suffer from chronic health problems

(Compas, et al., 2012; van der Lee, et al., 2007), and one in every five American children (20

percent) was considered to have a disability (Waldman, et al., 2012), while others found that up to

50 percent of all U.S. children have a disability, if children with conditions that last less than a


year or who have had at least one chronic condition at any time in childhood are included (Halfon

et al., 2012). The trend of children’s disabilities had shifted in the last decade from predominantly

physical conditions to developmental and emotional conditions (Delaney & Smith, 2012; Halfon

et al., 2012). In economically wealthy countries, childhood chronic illness becomes more prevalent

than acute (Halfon & Newacheck, 2010), mostly because of early detection and diagnosis,

improved medical care, technology, and access to services that had increased survival of children

with various medical risks (Anderson et al., 2007; Compas et al., 2012; Yui et al., 2015). Also,

more children have chronic illnesses and they are cared for at home rather than institutionalized.

All of the above represented the paradigm shift in care for chronically ill that started in the 1980s

(Kepreotes et al., 2010). This paradigm shift explains the compounding nature of the stress

imposed on parents of children with chronic illness and disability because the parents are caring

for these children much longer (years and sometimes decades) and they take care of them in their

homes rather than visiting them in institutions.

Factors that Shape Experiences of Parents of Children with Chronic Illnesses or/and

Disabilities. Empirical studies related to experiences of parents of children with chronic illness

and/or disability yielded knowledge about factors that shape their parenthood and their correlates.

These factors are socio-economic, family related, child’s illness related, and parents’ new status

of caregivers.

Socio-economic factors include high cost of care (Findler, 2014; Waldman et al., 2012),

societal stigma (Brown, 2013; Lightsey & Sweeney, 2008; Nachshen et al., 2005), negative

societal judgments, low social support and social isolation (Konrad, 2006; Lopez, et al., 2008;

Scrogie, Wilgosh & Sobsey, 2004).


Family-related factors include interpersonal problems between family members (Kerr &

McIntosh, 2000) and dysfunctional family’s coping strategies (Gupta & Singhal, 2004; Parish et

al., 2012). Because of the aforementioned circularity, some of these family related challenges

represent the outcomes of stress, which in turn serve as compounding stressors themselves, and

some studies report that marital and family functioning in these families may be far more important

predictors of parenting stress than the child’s chronic illness or disability (Neely-Barnes & Dia,

2008).

Child’s illness related challenges are those caused by the diagnosis (Barnett et al., 2003)

and its specific intellectual, neurological, mental and behavioral problems (Baker et al., 2005;

Einfeldet al., 2006; Feldman et al., 2007; Gray et al., 2011; Lecavalier et al., 2006; Muscara et al.,

2015; Nachshen, et al., 2005), a prolonged diagnostic process (Ajesh et al., 2007), inadequate

information provided by professionals (Claesson & Brodin 2002), frequent hospitalizations and

exacerbations of illness (Camfield et al., 2001), care-giving demands, and limited physical

accessibility (Raina, et al., 2005).

Parents’ new status as caregivers. Although caregiving is a natural part of being parents,

the role of caregiving to a chronically sick or disabled child who faces long-term limitations and

dependence adds unique challenges and stresses (Raina et al., 2005; Yamaoka et al., 2015),

especially after deinstitutionalization (Anderson et al., 2007; Raina et al., 2005). In addition, many

healthcare providers do not have appropriate training to address parental stress of caregiving and

issues related to it (Waldman & Perlman, 2007; Konrad, 2006), which in turn potentiate stress on

parents.

Stress factors vary across parents’ gender, ethnic, cultural, and racial lines (Ha et al., 2011;

Green, 2007; Keller & Honig, 2004; Yui et al., 2015). Intrinsic and extrinsic correlates of stress


for parents of children with chronic illness are often intermixed; for example, intergenerational

transmission of self-regulation, which is important in processing stress for parents of children with

chronic illnesses, includes a mix of prenatal (intrinsic and extrinsic), social/contextual (extrinsic),

and neurobiological (intrinsic) mechanisms (Bridgett et al., 2015).

Some studies relate greater long-term parental stress to the child’s symptoms of emotional/

behavioral nature (Butcher et al., 2008; Wang & Anderson, 2016), lack of control (Sallfors &

Hallberg, 2003), and parental isolation (Butcher et al., 2008). However, studies that controlled for

family income, age of the child, child behavior, parental coping style, maternal education, and the

number of children in the family showed no diagnosis-specific differences in stress for parents

(Abbeduto et.al., 2004; Neely-Barnes & Dia, 2008). Some studies found no substantial differences

in demographic characteristics and psychosocial adjustments of parents of children with various

disabilities or chronic illnesses (Cadman et al., 1991; Shonkoff et al., 1992), while psychosocial

resource such as feeling of competence was found to be a buffer of the stressors in other studies

(Butcher et al., 2008).

Since single-factor changes are rare in real life and because assumptions about additive

relationships cannot be fully verified, estimating the direct/ independent impact of any factor

related to caregiving is of limited value, as such approach lacks the information of indirect

connections between predictor variables and health outcomes (Raina et al., 2005).

Effects of Parenting Children with Chronic Illnesses or/and Disabilities. Encountering

the stresses of parenting children with chronic illnesses or disabilities often marks the beginning

of a process of loss and crisis for parents (Boström et al, 2009; Brown, 2013; Speechley, 2012), a

“binary of ‘normality’ and ‘specialness’” (Leipnik, 2015, p.1288), oscillation between despair and

hope (Sallfors & Hallberg, 2003). Parents grapple with existential issues and questions, “Why


Me?” “Why my family?” (Kushner, 1983; Seligman, 2000), as they experience the loss of a

“perfect child” (Ellis, 1989) they imagined and desired (Muslow et al., 2002). In addition to effects

of parenthood on all parents, parents of children with chronic illnesses or disabilities experience

unique negative and positive effects related specifically to their child’s illness or disability.

Negative Effects. Negative effects can be immediate and long-term. Immediate effects are

shock and associated feelings such as a sense of injustice, disbelief and anger at the negative

prognosis, pessimism, hostility, guilt, and shame (Barnett, et al., 2003; Ellis, 1989; & Nelson,

2002). Parents report feelings of incompetence and low self-esteem (Butcher, Wind, & Bouma,

2008), despair (Sallfors and Hallberg, 2003) and loss of hope, mostly based on messages of

hopelessness from professionals and others (Kearney & Griffin, 2001; Konrad, 2006). Long-term

negative effects can be individual and relational. Individual long-term negative effects include poor

well-being and physical health (Emerson, 2003; Ha, Greenberg, Seltzer, 2011; Landsman, 2003;

Seltzer et al., 2009; Seltzer et al., 2001; Sullivan-Bolyai et al., 2003; & Tripathi, 2015),

psychosomatic problems (Benson, 2010; Parish, et al., 2012) and sleep disorders (Meltzer et al.,

2015; Sullivan-Bolyai et al., 2003). Parents of children with disabilities experience more mental

health issues, including grief (Ajesh et al., 2007; Kepreotes et al., 2010), suppression of emotions

(Sallfors & Hallberg, 2003), depression, anxiety, suicidal ideation (Ajesh et al., 2007; Bailey et

al., 2007; Benson & Karlof, 2009; Cadman et al., 1991; Coffey, 2006; Weiss, 1991; Yamaoka et

al., 2015), and posttraumatic stress symptoms (PTSS) (Muscara et al., 2015; Phipps et al., 2006).

Some parents describe their mental well-being decline as intangible loss of joy and the spark of

life (Coffey, 2006). These parents also described feeling engulfed or overwhelmed (Atkin &

Ahmad, 2000), frustrated and relentlessly vigilant (O’Brien, 2001). Relational long-term negative


effects include disruptions in intra-familial relationships, family structure, and family cohesion

(Herzer et al., 2010).

The negative effects that parents experience can become a source of stress. For example,

the negative effects of distress/ Post-traumatic Stress Syndrome (PTSS) due to difficulty balancing

caretaking responsibilities with work and household tasks related responsibilities, and social life

may become stressors that potentiate and perpetuate parental distress, sadness, family arguments,

and child’s negative outcomes (Eccleston et al., 2013).

Correlates of negative effects are a child’s specific diagnosis (Ajesh et al., 2007),

inadequate medical advice and responses of health professionals (Ajesh et al., 2007), and cultural

insensitivity of others (Kepreotes et al., 2010). The negative effects in parents were reportedly

counteracted by “self-support, such as prayer, exercise, distraction, and cognitive strategies…”

(McNeill, 2004, p. 534).

Positive Effects. Despite the negative effects of parenting children with chronic illnesses

or disabilities, these parents reported also experiencing long term individual and relational positive

effects. Individual effects are often described by parents as the duality of suffering and strength,

loss and benefit, and disappointment and personal growth (Konrad, 2006; King et al., 2006).

Studies showed that with time, many parents of children with disabilities tend to adjust positively,

master stress, parental well-being and overall mental health improve, and many parents experience

PTG . Many parents of children with disabilities summarize their overall personal experience and

development in general as positive (Green, 2007; Ljungman et al., 2016; Strecker et al., 2014),

joyful (Ljungman et al., 2016; Schwartz, 2003; Taunt & Hastings, 2002), and extremely rewarding

(Landsman, 2003; Redmond & Richardson, 2003).


The process of positive adjustment to stress (Heiman, 2002; Ljungman et al., 2016;

Nachshen, Garcin, & Minnes, 2005) usually includes parental vigilance, constant watchfulness,

and living in the here and now, which results in positive feeling of mastering stress (Sallfors &

Hallberg, 2003). Improvement of well-being of parents is expressed in their self-confidence

(Sullivan-Bolyai et al., 2006), feeling of fulfillment (King et al., 2006), of being active, in charge,

and in control, being a protector and monitor of/ advocate for their child (Nelson, 2002; Coffey,

2006), being capable of keeping the balance (Sallfors & Hallberg, 2003), and improved quality of

life (Emerson, 2003). Improvement of parental mental health pronounces itself in eventual decline

in parental depressive symptoms (especially in mothers) (Glidden & Schoolcraft, 2003; Seltzer et

al., 2001).

Many parents of children with chronic illness or disability experience PTG (Barr, 2011;

Cohen Konrad, 2006; Strecker et al., 2014) up to over 60% in some studies (Hungerbuehler et al.,

2011). Elements of PTG were described sometimes as emerging unexpectedly and “coexisting

with the rigors and emotional strain… [allowing these parents] transform in positive ways through

trauma and adversity” (Cohen Konrad, 2006, p.101), “adjust to a new and different way of living,

re-examine their beliefs and values, and change some of their priorities in life” (O’Brien, 2001, p.

16). Some parents of children with disability, such as Down Syndrome, are noted to have positive

experiences of new possibilities, such as taking on new roles of becoming advocates for their

children, as well as acknowledging themselves as becoming better mothers and having personal

growth (Counselman-Carpenter, 2015). Positive effects that are experienced by this group of

parents, such as accepting the new reality, reexamining their belief system, utilizing coping skills

they perceived as effective, and seeking social support could be also considered as signs of PTG,

even if the authors of the studies were not using the PTG concept or model. Coping skills perceived


as effective were sense of hope [and support], the child as a source of happiness, fulfillment,

strength and of child’s positive contributions can be understood as PTG qualities, and can also

reframe or replace strategies that do not work (Hastings et al., 2005a; King et al., 2006). E.g.

emotion-focused strategies that parents saw as ineffective are substituted with problem-focused

strategies, which in turn produce better parental experiences and health outcomes (Lloyd &

Hastings, 2009).

Relational effects are described as improvement of relationships and marriage after the

child’s diagnosis (Hastings et al., 2002b; Kearney & Griffin, 2001; Scorgie & Sobsie, 2000), which

may serve as protective factors from detrimental health issues (Beresford, 1996; Boström et al.,

2009) as well as be used for further improvement of the parent’s life.

Correlates of positive effects in parents of children with chronic illness or disabilities are

intrinsic, extrinsic, and relational. Intrinsic correlates are higher levels of hope agency and

pathways (Lloyd & Hastings, 2009). Extrinsic correlates are less problematic child’s behavior

(Lloyd & Hastings, 2009), positive management style of medical professionals, including

encouragement of the active role of parents and showing trust in them by professionals (Sullivan-

Bolyai et al., 2006), support by medical specialists in a culturally- and linguistically appropriate

manner (Atkin & Ahmad, 2000), and availability of social support and access to resources

(Emerson, 2003). Relational correlates include communication with other parents of children with

disabilities that serves as a stress buffer, as it provides a sense of normality in an otherwise

“abnormal” situation (Kerr & McIntosh, 2000), and a broadened social network for both parents

and children (Kerr, et al., 2000). More formal supports (e.g., support groups) are salient for parents

of children with more chronic conditions (Canary, 2008) as they nurture feelings of belonging,

empowerment and self-confidence in parents when handling challenges regarding their child with


disability (Lo, 2010).

Experiences of Parents of Children Diagnosed with ASD

In studies to date, parents of children diagnosed with ASD scored higher on stress levels

than any other groups of parents (Bonis, 2016; Pisula, 2002) because of the lifelong nature of the

diagnosis (Ooi et al., 2016) and its unique stresses, in addition to stress pertaining to parents in

general (Giovangoli et al., 2015; Sander & Morgan, 1997), parents of children with chronic

illnesses (Bluth, Roberson, Billen, & Sams, 2013), and other developmental disabilities (Hastings

& Johnson, 2001). After the ASD diagnosis is made, parental stress manifests in feelings of loss

of “normality” (Ruiz-Robledillo et al., 2014) and mourning the “ambiguous loss” (O’Brien, 2007)

of the typically developing child that they expected to have (Ariel & Naseef, 2006). Studies have

identified factors that shape parenthood and documented negative and positive effects of parenting

a child diagnosed with ASD, and their correlates.

Factors that Shape Experiences of Parents of Children with ASD. Factors that shape

parenting children with ASD are diverse and are subject to stress proliferation (Benson & Karlof,

2009, Ward, 2014), i.e. they tend to create additional stresses themselves. These factors include

acute factors, mostly related to the ASD diagnosis, and chronic factors, related to post-diagnosis

period.

Acute Factors. Predictors of parental stress were related to the diagnosis of ASD and

include symptomatology of ASD and initial diagnostic process (Altiere & von Kluge, 2009; Ariel

& Naseef, 2006; Davis & Carter, 2008; Estes et al., 2013; Giovagnoli et al., 2015; Lyons et al.,

2010; Myers et al., 2009; Ooi et al., 2016). Symptomatology-related factors include the child’s

communication deficits, peculiar and challenging stereotyped or tantrum behaviors, and deficits in

social relatedness with others (Davis & Carter, 2008; Zwaigenbaum et al., 2005). Communication


deficits of children with ASD diagnosis are described as the inability to initiate and respond to

both verbal and nonverbal social cues (Ooi et al., 2016). Peculiar and challenging stereotyped or

tantrum behaviors exhibited by children with ASD are frequently the only visible signifiers of this

condition, and are often perceived by the general public and the extended family as unacceptable.

Deficits of social relatedness with others include low levels of social engagement, decreased levels

of eye contact, and low social affect (Koegel et al., 2009; Ludlow et al., 2012). Initial diagnostic

process- related factors include the unusually lengthy process, late diagnosis, and lack of parental

education about this specific diagnosis and its implications. While some parents describe having

early on the notion that their child was not developing typically (Kozlowski et al., 2011), others

report having no warnings of an impending diagnosis (Casey et al., 2012; Hastings et al., 2005b;

Mansell & Morris, 2004; Rose, 2011), and perceive the point of diagnosis as “being hit by the

Autism bomb” (Shore, 2006, p. 199). When the diagnosis is made, it is usually delayed by two to

three years, leaving parents subjected to the stress of not knowing what is wrong with their child

for a prolonged period of time (Keenan et al., 2010; Kozlowski et al., 2011). These parents

experience ambiguous loss of the typically functioning child they thought they would have

(Keenan et al., 2010), and some parents describe their child as a burden, which further contributes

to stress (Kheir et al., 2012; Myers et al., 2009). Many parents perceive themselves as left out of

their child’s education and care plans (Keenan et al., 2010), and report insufficient family support

during the time of diagnosis (Coulthard & Fitgerald, 2007).

Chronic Factors. ASD diagnosis related and post-diagnosis related factors represent the

sources of chronic stress for parents of children with ASD. ASD diagnosis related chronic stressors

continue to be the on-going pervasive symptoms of ASD, lack of understanding of the child’s

developmental deficits (Pisula, 2002), the inability to accept these deficits (Davis & Carter, 2008)


and the permanency of ASD (Sharpley et al., 1997). Post-diagnosis related factors include

uncertainty about the future of the child and of the whole family (Ooi et al., 2016; Poslawsky et

al., 2014 ), and capacity for independence of the child’s future (Siman-Tov & Kaniel, 2010; Smith

et al., 2007), as well as the lack of parental knowledge of the long-term ASD diagnosis

implications, lack of knowledge about the adequacy of post-diagnosis services as well as

dissatisfaction with these services, and lack of appropriate in-depth communication with

professionals involved in the child’s care (Koegel et al., 1992; Osborne & Reed, 2008; Siklos &

Kerns, 2007). Low level of family support post-diagnosis continues to be a long-term stress factor

for parents rearing a child with ASD (Bromley, et al., 2004; Breevaart & Baker, 2012).

Effects of Parenting Children with ASD and Their Correlates. After the diagnosis of

ASD is made, parents undergo a process of grief and loss, which includes phases of shock and

disbelief, sadness and anger, loss of hope, and despair, reorganization of their family structure

(Milshtein, et al., 2010) and learning to accommodate and integrate new priorities and the new

reality (Brown, 2013; Elder & D’Allesandro, 2009; Fleischmann, 2004; Ruiz-Robledillo, et al.,

2014). The effects of parenting a child with ASD can be negative and positive.

Negative Effects and Their Correlates. Rearing a child with ASD can produce individual

and relational negative effects. Individual negative effects include poor overall psychological well-

being (Raina et al., 2005), negative changes in parental mental health, and dysfunctional coping

strategies. Negative changes in parental mental health include psychological distress, anxiety,

depression, and post-traumatic stress symptoms (PTSS), which were reported in about 20% of

parents (Casey et al. 2012; Keenan et al., 2016). Compared to all other parents, parents of children

diagnosed with ASD experience high levels of attachment-related anxiety (Keenan et al., 2016),

especially in mothers (Hastings, 2003), and compared to parents of children with other disabilities


(Estes et al. 2013; Myers et al., 2009; Wang et al., 2011), they are found to have higher levels of

distress (Bromley et al., 2004), pessimism and depression (Gross et al., 2008; Holroyd &

McArthur, 1976; Kasari & Sigman, 1997; Koegel et al., 1992).

Parental distress may cause further negative effects in a parent’s attitudes and personality,

such as hostility and skepticism (Keenan et al., 2010; Kozlowski et al., 2011). Since the direct

cause of ASD is unknown and is open to individual interpretations, parents often feel guilty and

self-blame for their child’s diagnosis (Bourke-Taylor et al., 2010; Myers et al., 2009; O’Brien,

2007), leading to worse adjustment and increased depression over time (Mickelson et al., 1999).

Dysfunctional coping strategies developed by parents of children with ASD include self-blame,

social diversion, and emotion-focused coping (Cappe et al., 2011; Dabrowska & Pisula, 2010),

which serve as a predictor of stress and pessimism in parents (Dabrowska et al., 2010; Lyons et

al., 2010). Other dysfunctional coping strategies of escape, avoidance (Dunn et al, 2001; Hastings,

et al., 2005b; Pisula et al., 2010), blaming, withdrawal, helplessness (Pottie et al., 2008), and denial

(Dunn et al., 2001; Tarakeshwar & Pargament, 2001) are related to increased distress and mental

health problems (low daily mood and depression) in both mothers and fathers (Hastings et al.,

2005b; Pottie et al., 2008). Dysfunctional coping strategies may become stressors that potentiate

the individual and relational negative effects of parenting a child with ASD, which can be

explained by the circularity principle.

Relational negative effects include negative impact on marital, parent-child relationships,

and impaired family functioning. Problems in marital relationships (Bourke, et al., 2010; Dunn et

al., 2001, Hastings et al., 2005b; Meadan et al., 2010; Myers et al., 2009) include lower relationship

satisfaction (Brobst et al., 2009) and higher divorce rates than in parents of children without ASD,

although even when divorced, they often co-parent their child with ASD (Hartley et al., 2011).


Parents rearing a child with ASD are also found to have more distant parent-child relationship

than parents of children with other developmental disabilities (Kasari & Sigman, 1997; Koegel et

al., 1992). Parents of children with ASD experience impaired family functioning (Meirsschaut et

al., 2010; Myers, et al., 2009), as well as low adaptability and cohesion (Higgins, et al., 2005),

which in turn may exacerbate the low perception of well-being by parents, even in comparison

with parents of children with other developmental disorders (Abbeduto et al., 2004).

Correlates of negative effects are found to be the parent's gender and the level of support

parents receive. For example, the negative individual effects differ for different genders of a

parent. Because mothers usually assume a larger role in parenting children with ASD (Gray, 2003;

Meaden, Halle, & Ebata, 2010), they experience higher psychological distress (Firat et al., 2002;

Moes et al., 1992) and lower levels of well-being (Dabrowska & Pisula, 2010; Estes et al. 2013)

than fathers. They also show lower perceived attachment and satisfaction, and more guilt,

depression, psychopathology (Firat, et al., 2002; Meirsschaut, Roeyers & Warreyn, 2010), as well

as overall challenged health (Fairthorne, et al., 2014; Fairthorne, et al., 2016) and lifestyle (Gray,

2003), even in comparison with mothers of children with other disabilities (Dabrowska et al., 2010;

Meirsschaut, et al., 2010).

Parent’s gender also plays role in parent-child relationships, as mothers feel closer to their

child than fathers, while father’s relationship with the child is more dependent on child’s

characteristics; e.g., the father-child relationship is less satisfactory with higher communication

and behavioral deficits of the child (Hartley et al., 2011).

Regarding the correlate of the level of support received by parents, it was found that higher

severity of parental distress is associated with lower level of family support and/or higher level of

problematic behaviors in the child with ASD, while feeling the lower level of support was


associated with being a mother of a boy with ASD, being a single parent, and living in poor housing

(Bromley et al., 2004).

Positive Effects and Their Correlates. Parents of children with ASD also experience

individual, child related, and relational positive effects of parenthood (Myers et al., 2009; Samios

et al., 2009). Individual positive effects include improved well-being, decreased distress, resilience,

PTG, and coping strategies that parents considered effective (Barker et al., 2011; Barker et al.,

2014). Resilience in parents of children with ASD was found to be one of the major positive effects

as well as a significant factor that helped all family members (mothers, fathers, , grandparents, and

other family members) to overcome the stress and burden associated with care (Bekhet, Johnson

& Zauszniewski, 2012). PTG in parents rearing a child with ASD (Strecker et al., 2014) was

manifested in positive changes in parents’ personal beliefs (Coutlhard & Fitzgerald, 1999; King,

et al., 2006), personal growth and self-reflection (Charles & Berman, 2009; Zhang, et al., 2013),

gaining greater patience and control (Myers et al., 2009, Zhang et al., 2013), positive changes in

their life priorities and appreciation of life (Myers, et al., 2009), “reframing life” (Pottas & Pedro,

2016), a new philosophy of life (Zhang, Yan, et al., 2015) and world-view (Bayat, 2004), and

spiritual and/or religious growth or change (Strecker et al., 2014; Zhang, Du, et al., 2013; Zhang,

Yan, et al., 2015). Parent’s perceived effective coping includes increased problem-focused and

cognitive behavioral strategies, planning, positive outlook, reframing, seeking social, spiritual, and

religious support and emotional regulation, religious compromise and distraction coping, lowering

parental expectation about the child’s future, as well as changing their perceptions of meaningful

life (Kheir et al., 2012; Ruiz-Robledillo et al., 2014; Wang et al., 2011). In turn, these coping

strategies are most beneficial for parental (especially maternal) well-being, and lessening of stress,

depression, and daily negative mood (Lyons et al., 2010; Pottie & Ingram, 2008). Many of these


coping strategies could be seen as representations of PTG. For example, changing parental

perceptions of meaningful life (Kheir et al., 2012; Ruiz-Robledillo et al., 2014) corresponds with

the PTG domain of “appreciation of life,” and could be evaluated as such. Parents also reported

experiencing a sense of support when they became advocates for their child and for other parents

with children with disabilities (Charles et al., 2009; Myers et al., 2009), which also can be seen as

manifestation of the PTG domain of new possibilities.

Child related positive effects include better understanding of the child’s ASD diagnosis

(Altiere & von Kluge, 2009; Ekas, Lickenbrock, & Whitman, 2010; Manning et al., 2010),

improved satisfaction with the diagnostic process (Bayat, 2007), and finding benefit and positive

meaning of child’s disability (Myers et al., 2009; Samios et al., 2009). Parents reported positive

perception of their child’s qualities and uniqueness (Myers et al., 2009; Safe et al., 2012) and

perceive the challenging (and unacceptable by others and society) behaviors of their child as

communication impairments that are less ambiguous and more concrete (Siklos et al., 2007).

Relational positive effects manifested as enriched parental and marital relationships

(Myers, et al., 2009; Samios, et al., 2009), as well as mother-child relationships (Charles et al.,

2009), other relationships in parents’ lives (Zhang, Du, et al., 2013; Zhang, Yan, et al., 2015),

including relationships with medical providers (Hall & Graff, 2010; Steiner, 2011) and increased

level of support (in a form of neuro-psychoeducation) they provide. The other form of positive

relational effect includes informal social support, which produces positive effects such as buffering

stress (especially in mothers) (Charles et al., 2009; Benson, 2006), reducing levels of parental

depression (Benson, 2006; Sharpley et al., 1997) and anxiety (Bitsika et al., 2004; Boyd, 2002),

and contributing to better perceived health in parents of children with ASD (Canary, 2008; Ruiz-

Robledillo et al., 2014).


The main correlate of positive effects in parents of children with ASD was found to be

parental optimism. Parent’s optimistic character was linked to improved parental well-being and

decreased distress (Bayat, 2007; Bishop, Richler, Cain & Lord, 2007; Ekas, Lickenbrock, &

Whitman, 2010), while parental sense of coherence emerged as the main predictive factor of such

improvement (Pozzo & Sarria, 2015). Parent’s optimism has also been linked to increased social

support (Bishop, Richler, Cain, & Lord, 2007; Ekas, Lickenbrock, & Whitman, 2010) and family

support (Ekas, Lickenbrock, & Whitman, 2010).

Summary of Empirical Findings

The body of empirical literature relevant to the research question has studied the

experiences, particularly the stresses and challenges, negative and positive effects, and factors

associated with parenting in general, parenting a child with a disability and parenting a child with

ASD.

Chapter 3: Method

This chapter discusses the methodology of the study, including definitions and sensitizing

of constructs, design, sampling strategy, sample composition and size, instruments, data collection,

management and analysis, ethical consideration and limitations of the study.

Research Constructs

The constructs studied were parenthood, ASD and PTG.

Parenthood is the state of being a mother or a father with all positive and negative

experiences related to raising and caregiving of a child, as well as constant changes in the

boundaries of parenthood such as alternative family forms and marriages, diverse cultural

composition of families with conflicting convictions about parenthood, and various legal

implications of being a parent (McClain & Cere, 2013; Merriam-Webster, n.d.).


Parent’s experiences may include psychological distress, changes in well-being, physical

and psychological health, satisfaction with life and relationships, and coping mechanisms to

overcome stresses and adversities of life, as well as changes in the world view related to

parenthood. In this study, the parenthood experience is conceptualized as a composite stressor

(Bluth, Roberson, Billen & Sams, 2013; Hill, 1949; Perry, 2004) of a layered compounding nature.

ASD is defined as a complex developmental neurological disability with mild to severe

symptomatology including deficits in social communication and social interaction, restrictive and

stereotyped patterns of behaviors, interests and activities. It typically appears during the first three

years of life (DSM IV, 1994). Although criteria for ASD diagnosis were revised in DSM-5 (2013),

for the purposes of this study, the definition from the previous DSM-IV (1994) was utilized

because participants’ young adult-age children in this study were diagnosed before the new

diagnostic criteria were introduced. Diagnosis of ASD must have been made by a medical

professional such as a medical or mental health practitioner (psychologist, child psychiatrist,

developmental pediatrician or child neurologist) during the childhood years (as early as 18 months)

and not after the child is grown.

PTG is the experience of positive transformation that an individual reports as an outcome

of struggling with a traumatic event (Tedeschi, Shakespeare-Finch, Taku & Calhoun, 2018). PTG

has a transformative component in which individuals or groups move beyond their previous level

of functioning, and beyond the mere ability to resist and recover from highly stressful conditions

(Lepore & Revenson, 2006; Tedeschi & Calhoun, 2004). In this study, the construct refers to

benefits found by parents or growth they have experienced as a result of the struggle with raising

their child diagnosed with autism.

Study Design and Method


A qualitative narrative inquiry was used as it is suitable for the goal of the study to allow

understanding retrospectively the unique experiences of parents who have raised children with

ASD and capturing the general themes woven throughout their stories (Creswell, 2012).

Qualitative methodology, specifically narrative inquiry, offers a good fit for this study for two

reasons. First, qualitative methods aim to capture the “inside” subjective interpretations and

perspectives of a reality and seek a deep understanding of the lived experience and how it is given

meaning (Padgett, 2017), as was the goal of this study. People come to understand and give

meaning to their lives through a story, and it is often retrospectively that such understanding and

meaning to events are developed (Polkinghorne, 1995). Parents of adult children diagnosed with

ASD tell stories of their lives, providing an opportunity for the researcher to describe, collect and

tell stories of such lives, and write narratives of the experience (Connelly & Clandinin, 2011).

Second, qualitative methods are appropriate for exploring populations about which there is lack of

knowledge and topics of emotional depth and sensitivity (Padgett, 2017; Sofaer, 1999) such as the

population targeted for the proposed study.

Population, Sample, and Sampling

Parents of any race, socioeconomic status and marital status (married, single) of young

adults, ages 18-30 diagnosed with ASD, were recruited through purposive sampling. Inclusion

criteria were: 1) self-identification as having at least one child between the ages of 18-30 formally

diagnosed with ASD; 2) self-identification as having experienced growth following raising a child

with ASD; 3) English speaking; 4) agreement to participate. Excluded from this study were parents

whose child is younger than 18 years old or older than 30 years of age, has never received a formal

diagnosis ASD, and parents who did not speak English.


Participants were recruited through posting flyers (Appendix A) in community

organizations in the NYC and Boston areas, advertisements in local parenting magazines,

newspapers, and online forums geared towards parents of children diagnosed with ASD, family

members of parents and other parents, in the network of parents with young adult children

diagnosed with ASD. Snowball sampling was also used, i.e., requesting participants to refer

individuals they may know who share the experience under investigation (Padgett, 2017).

Attempts were made to diversify the sample of participants from the organizations and forums that

received advertisement. Four individuals whose identities were unknown reached out via phone

and email with interest in learning more about the study, but three did not follow through with

participation with no offer of an explanation. One person identified as Bangladeshi, living in

Bangladesh did schedule an interview but at time of the interview, he did not join the virtual

scheduled call. Attempts were made to reschedule but there was no response. Due to this, my

sample failed to be diverse. Parents who responded to advertisements and met the inclusion criteria

were included.

The sample size was determined based on saturation, wherein a deep understanding of the

phenomenon was established as evidenced by no new themes and subthemes emerging (Padgett,

2017). Similar studies included 11 to 21 participants (e.g. Konrad, 2006; Woodgate, Ateah &

Secco, 2008), which offered an estimate of possible N size in this study. The final sample of this

study included 16 parents.


Sample Composition

Table 1


Sociodemographic Characteristics of Study Participants

Note. In ‘Gender and Age of the Child with ASD column,’ the *(asterisk) designates one of two

children with ASD who were at the center of the parent’s interview.

As shown in Table 1, the sample consisted of 12 mothers and 4 fathers. All 16 parents have

at least one child between ages 18-30 who was provided with a diagnosis of ASD; 12 parents have

more than one child; and two parents had more than one child with an ASD related diagnosis and

preferred to focus on a specific child for the interview. The sample included 14 participants who

identified as Caucasian and two who identified as Asian. Participants resided in the United States

(New York, Florida, North Carolina, Massachusetts, Michigan and New Hampshire) and Japan.


All participants had advanced degrees, having completed high school and college. Fourteen

participants completed Master’s Degrees.

Participants ranged from 51 to 66 years old, with a mean age of 58 (SD = 4.996) at the time

of the interview. At the time the child was born, the parents’ age ranged from 26 to 43 years old

with a mean age of 34.5 (SD = 4.351). The children of the participants ranged in age from 18 to

27 years old with a mean age of 22.5 (SD = 2.756) at the time of interview. Eleven participants

reported working full time, one participant reported working part time, one identified as semi-

retired, one as retired and caring for a child, and two participants identified as stay-at- home

mothers. Eleven participants reported being married and still living with the spouse with whom

they had their child. One participant reported never being married to the biological father of the

child and raising her child as a single mother. At the time of the interview, she was married (not

to the biological father). Three participants were divorced from their spouse and one reported being

separated at the time of the interview.

Data Collection

The researcher collected data using one in–depth semi-structured interview to capture

participants’ lived experience (Creswell, 2012; Marshall & Rossman, 2011). Specifically,

narrative inquiry was employed, in which the participant and the researcher collaborated to co-

construct the participant’s story and its meaning (Marshall & Rossman, 2011). Information about

the context of the narrator’s personal stories such as their cultural and historical background were

collected (Creswell, 2012). Because language is used as a medium in narrative inquiry and because

cultural differences shape one’s worldview, great care was taken not to prescribe the language

used in the interview (Bauer, 1996). The researcher asked questions that supported participants to

tell their stories in their own way and from their own perspectives. For example, the researcher


used prompts such as, “tell me the story of” or “tell me about the time when,” and made sure to be

explicit enough for the participant to feel gently guided while remaining open to the direction the

participant took in their response. In addition, particular care was taken not to define terms but to

allow the participant to share their meaning of the experience. For example, the point of diagnosis

was not defined as trauma. Participants were asked to tell about when they first learned or noticed

something was different or concerning.

An interview guide (Appendix B) was developed based on current research about

parenting children diagnosed with ASD. Topics included questions about the younger and later

years of childhood and young adulthood, parenthood roles within the family, and the experiences

of challenges and personal growth as they relate to parenthood of children with ASD. In addition

to questions about the time leading up to the diagnosis, questions regarding others’ (family

members, peers) reactions to the diagnosis, as well as support that was received, were asked since

perceived informal and formal support plays a pivotal role in the parenthood experience (Bromley,

et al., 2004; Duhn et al., 2001) and facilitation of PTG (Tedeschi & Calhoun, 2004). Additionally,

since much of the current literature reflects an assumption of naturally gendered parental roles with

mothers as primary caretakers of children (Crnic, Pederson et al., 2009; Kobak & Madsen, 2008),

a probe (“Tell a little bit about your role, duties or responsibilities within the family”) was used to

elicit information about the participant’s role within the family to better understand whether the

participant falls into naturally/traditionally gendered roles. Questions were also geared to the later

years of parenthood to understand how experiences and ways of coping stayed the same or have

changed over time and what contributed to these changes. The open-ended questions allowed

participants to recall the experiences of parenting from the birth of their child, through the process

of diagnosis of ASD, and following it. Probes of different types such as silent, echo, “uh-huh,” and


“tell me more” (Price, 2002) were used to steer the conversation and provide clarity, contrast,

historical significance, and to obtain the desired depth and richness (Padgett, 2017). As new topics

emerged during interviews, the interview guide was updated to include new pertinent questions.

After each interview, participants were given the opportunity to ask the PI any questions

they wanted clarified. Some participants declined to ask questions while others asked about the

researcher’s interest in the topic and how the findings will be used to support other parents. Sharing

of self by the researcher is part of the co-construction of the narrative in narrative inquiry (Sfard

and Prusak, 2005), and thus, the researcher shared appropriately her relevant professional and

personal reasons for pursuing research on this topic and her hopes for how the findings will support

the experiences of other parents of children diagnosed with ASD and their families. Some

participants continued to share their retrospective insights and suggestions about what can be done

to support parents as children age. This dialogue was analyzed as part of the data analysis process.

The logistics of the interviews such as location and time were determined by geographic

feasibility, convenience, and preference of the participant. In-person interviews were preferred,

but if a participant was not able to attend an interview physically, it was conducted by means of

audio-visual Internet communication, e.g. Skype (Berger & Paul, 2011; Brondani, MacEntee, &

O’Connor, 2011; Deakin & Wakefield, 2013). Due to geographical distance and convenience, 11

participants opted to be interviewed via the virtual medium of BlueJeans, and five participants

were interviewed in the researcher’s office. In-person interviews were audio-recorded and virtual

interviews were video-recorded for later analysis.

Trustworthiness

To maintain trustworthiness, confirmability, credibility, auditability and transferability

were assured (Padgett, 2017). To assure confirmability, i.e. the fit between participants’ views and


the researcher’s interpretations, the report of findings includes direct quotes from participants’

narrative to clearly link it to the information that is shared (Padgett, 2017). To secure credibility

and minimize researcher bias, the researcher provided participants with a copy of their transcribed

interview, alongside notes and coding, for validation checks, i.e. to offer them an opportunity to

review the data and discuss any misunderstandings or clarify anything that were mis-transcribed

while offering edits or changes to be made (Creswell, 2012; Padgett, 2017). Alternatively, the

researcher also offered to review the transcription and codes together over the phone, in person or

via email, to clarify any misunderstandings or misinformation. All participants chose to engage in

this interpretative process by reviewing the codes and transcript themselves and provided feedback

to the researcher via email.

The main changes that participants offered were more deepened explanations of

information provided during the interview regarding parent-child dynamics, such as clarifying

their perspective of their spouse’s involvement in the child’s daily activities, and clarifications

about points made during the interview. Participants added information related to their present

concerns about their child’s future. Two parents stated that reviewing the transcript brought up

difficult emotions. One parent shared concerns about how coherent and clear she sounded during

the interview, and offered explanations to her initial responses during the interview.

This collaboration and co-construction of the narratives was vital to the narrative process

and allowed for member checking and minimization of researcher bias (Padgett, 2017). The

researcher fostered the trust and rapport by clearly delineating the purpose of the study to each

parent, and respectfully listening more than speaking during the interview displaying empathy,

compassion, and patience when sensitive and personal information was shared (Creswell, 2012;

Dickson-Swift, James, Kippen & Liamputtong, 2007).


Auditability is the degree to which the researcher documents the research process so that

anyone outside the study can follow along and understand the researcher’s thinking. This was

maintained by carefully documenting notes in a logical and organized manner, allowing others to

follow the steps taken throughout the study, as well as documentation of communications with

parents and categorizing procedures (Padgett, 2017). Transferability, i.e. ensuring to which parents

with similar characteristics and in similar situations and circumstance the findings could be

applicable, was maintained by accurately describing the research context and assumptions specific

to this research study (Gunawan, 2015).

Data Management and Analysis

Data were analyzed using thematic narrative analysis (TNA), a strategy of narrative

inquiry, in which the emphasis is on the content or what is being told, rather than how it is being

told (Riessman, 2005). After each interview, the researcher made notes about her general

impression and overall experience of the interview, as well as any nonverbal gestures and

communications captured in the video-recordings and those not captured in the audio-recordings.

Transcription of interviews was completed by the researcher to guarantee immersion in the data

and create an opportunity for memoing. The data were content analyzed beginning immediately

after the interview with the first participant. Each interview was completed, transcribed and

analyzed before moving on to a subsequent interview to maintain the integrity and value of each

interview and to allow further development of the interview guide to be used with the next

participant (Riessman, 2008).

The analysis was conducted in three phases. In the first phase, emerging themes related to

the research question, such as experiences of parents rearing a child diagnosed with ASD, and

retrospective perception and interpretation of the experience, were identified. The themes were


coded and tracked as the data collection process continued. The second phase occurred after the

completion of all the interviews. As per narrative inquiry, key elements in the narratives related to

parental experiences were identified and organized into each respondent’s chronological

biographical account (Creswell, 2012). The researcher revisited the themes that were identified in

the first phase and that were contained in each account, moving back and forth between phases as

needed, because this process is recursive and develops over time (Braun & Clarke, 2006;

Riessman, 2008). The final phase involved cross-case analysis of common themes woven

throughout the narratives relative to the lived experience of parenting children with ASD, and the

growth through the process via retrospective lens. After all the interviews were analyzed, the

emerging underlying themes were compared, and any shared themes were combined to create a

comprehensive understanding of the parents’ lived experiences (Reisman, 2008).

In addition to the aforementioned three phases, the memos that the researcher developed

throughout the interviews were content analyzed. This process of analytic memoing of thoughts

and insights of the researcher enriched the analytic process by fostering creativity, clarity of

thought, and helped to extract meaning from the data (Marshall & Rossman, 2006; Smith, 2000).

Feedback from participants refined the study data. Ten participants’ feedback included additional

information to what they shared in the interview, notes on what they felt was missing or items they

wanted to highlight as significant. One parent provided clarity to a code that struck the parents as

incomplete. Two parents provided more extensive notes alongside the original transcript because

they wanted to be sure that what they expressed came across in a coherent manner. The interviewer

took all comments and edits into consideration, made necessary changes and managed codes and

findings based on the feedback.

Ethical Considerations


This study was reviewed and approved by the Adelphi University Institutional Review

Board (IRB). Prior to participating in the study, participants signed an informed consent form

(Appendix C), in which they were made aware of the nature and procedures of the study, the

benefits and potential harm of their participation such as triggering emotional stress that can

develop in the midst of the interview process and ways in which the study can be a source of

benefit for the participant and other parents with children diagnosed with ASD. They were made

aware that participation is strictly voluntary and they may decline to answer any questions or/and

withdraw from participation at any time with no negative consequences (Hulley, Cummings,

Browner, Grady & Newman, 2007) and that there was no compensation for participation. Once

the consent form was reviewed and signed and questions addressed, interviews were scheduled

and started.

Because of the potential vulnerability of parents raising children diagnosed with ASD,

special attention was paid to possible worry related to disclosure of parenting styles and decisions,

or culturally sensitive issues such as cross-cultural differences in the meaning of items in

standardized forms (i.e. informed consent form) and the interview questions, the nature of the

study obligations and process (Marshall & Rossman, 2011). Because participants were discussing

sensitive matters pertaining to their lived experience that may be upsetting in nature, the researcher,

an experienced practitioner, offered to stop the interview if the need arose. While the possibility

that some of the questions could be upsetting existed, no participant requested the interview to be

stopped or to take a break. Prior to the beginning of the interviews, the researcher researched

support referrals in the participant’s state and country of residence to make them available if the

need arose. However, no participants requested such information.


To ensure confidentiality and protect participant’s privacy, names were changed to

pseudonyms (Padgett, 2017). While the participants were offered an opportunity to choose their

own pseudonyms, they declined and deferred to the researcher to choose a pseudonym. Each

participant approved the suggested pseudonym. All physical documents were kept in a locked file

box in the researcher’s home office to which only the researcher has access. Demographic and

personal identifying were stored separately from the interview transcripts. Digital audio and visual

recordings and interview transcripts were saved in a password protected file folder on the

researcher’s home computer, to which only the researcher has access. All participants were offered

an opportunity to receive a copy of the completed study. As a token of gratitude for time and

willingness to participate in the study, a partial reimbursement for travel was offered to participants

up to 25 dollars.

Study Limitations

Limitations of this study are related to the small sample size, the limited diversity among

participants (out of 16 participants, one lives in Japan and one person of Chinese descent living in

the US), the voluntary nature of participation, and potential response bias and researcher bias. As

traditional in qualitative research, the sample size was determined by saturation (Padgett, 2017).

While the small sample size, composition and sampling method limit the generalizability of the

findings, the aim of the study was to capture the in depth lived experiences of the parents of young

adult children diagnosed with ASD rather than providing data that can be generalized to a broader

population. Although efforts were made to recruit a diverse sample of parents, the sample consisted

of two parents who identify as Asian and fourteen parents who identify as Caucasian. Diversity

was also limited in terms of level of education of participants.While snowball sampling was used

to encourage recruitment of a diverse sample of participants (referring others they may know that


fit the study criteria), one of the limitations of this is that participants usually come from the same

social group and therefore often share in similar perspectives and ways of thinking (Browne &

Russell, 2003). The lack of diversity does not provide for a wider perspective of the lived

experiences of parents with children diagnosed with ASD and only highlights the experience of

mostly Cuacasion and two Asian identified parents from middle-class backgrounds (Allmark,

2004). Several parents whose identities are unknown, reached out with inquiries to learn more

about participation in the study, but did not follow up with the researcher after the information was

sent to them. One interested father from Bangladesh scheduled a virtual interview but did not show

up, and did not respond to the researcher’s follow up to reschedule. In addition, because the

interviews were conducted in English, it excluded non-English speaking individuals from

participation. The voluntary nature of participation, which generated a self-selected sample, also

limits the generalizability of the findings to parents who are similar to those who participated,

although generalizability is not the goal of qualitative research (Padgett, 2017). Finally, the

findings are further limited to parents who have access to a computer and to the internet, excluding

parents who did not have access to a computer or are not currently associated with an organization,

provider or support group, through which participants were recruited.

Utilization of self-report during the interview process may have elicited response bias from

participants, wherein participants may have responded to questions in a manner that they feel is

socially desirable rather than adhering to accuracy (Monette, Sullivan, & DeJong, 2011). To

mitigate response bias and elicit authenticity in responses, the researcher made an effort to enhance

rapport with each participant by establishing them as the expert of their story, assuring them that

they can choose not to respond to any question, asking open ended questions in a non-judgmental

manner, and assuring confidentiality. Nevertheless, response bias was still possible.


The limitation of the researcher bias is due to the difference in the life circumstances of the

researcher who does not have parental experience, let alone parental experience of a child with

ASD, and the participants who have parental experience with special circumstances. To mitigate

this potential limitation, the researcher engaged in “interviewing the investigator” prior to the first

interview (Chenail, 2011, p. 258), assuming the role of the participant in an interview conducted

by a colleague. This experience was journaled and reviewed, to inform finding helpful strategies

to support communication with the actual participants, identify and minimize possible biased

perspectives and a priori assumptions about the participants, and help gain an appreciation of

vulnerability and feelings of not being heard (Chenail, 2011). Nevertheless, researcher bias still

may be present.

Chapter 4: Findings

This chapter presents the findings of the study. Analysis of the interviews yielded three

major findings: 1) multilayered compounding stress and negative experiences of parents of

children with ASD; 2) posttraumatic growth (PTG) and other positive effects of parenting

children with ASD; and 3) the kinds of coping parents rearing children with ASD use, factors

that contribute to coping, and the ASD Family Unit, a unique outcome and approach to parenting

that derived from the way parents coped. Illustrative quotes from the interviews are used in their

narrative form without corrections for grammar, to preserve authenticity of the participants’

voices (Reissman, 2008).

Multilayered Compounding Stress and Negative Experiences of Parents of Children with

ASD

The parenthood experience of parents of children with ASD is multilayered, as they deal

with multiple, diverse and specific challenges and stressors related to parenting in general,


parenting a child with chronic illness/disability, and specifically parenting a child with ASD. This

multilayered stress is of a proliferative compounding nature, producing negative effects of

parenting children with ASD.

Stressors Related to Parenting in General

Challenges and stressors of parenting in general are mostly related to the period of

transition to parenthood, and include stressors prior to birth, difficulties with the birth process, and

difficulties with adjustment after birth. In this section and throughout, challenges and stressors are

used interchangeably.

Stressors Prior to Birth. Parents shared about stressors prior to the birth of their child

with ASD that contributed to their experience of the transition to parenthood. These included

conception as a surprise, geographical relocation, lacking a job, past miscarriage or loss of a child,

health concerns related to other family members - all while expecting the child, and parental

character features.

For example, LT, a married mother of a 25-year-old son, shared about her unexpected

pregnancy:

I had been told by two or three different doctors that I would never be able to have children. I had issues with my ovaries and whatnot… I met a man. I got pregnant, and I had wanted to have a child. I was 36 years old and I never thought at that point I would get pregnant. It was very bizarre and he was not a likely candidate for parenthood …but I decided that I wanted to keep the baby.

LT further reported about the stress of enduring a geographical relocation and lacking a job:

I was out there in California waiting to go back to school to get my Master’s in Social Work. I got accepted to a program. I was looking forward to starting that… Shortly after I decided that I realized I could not stay in California. I had a handful of friends there, but my life had been in New England and I wanted to be back where my family and friends were. I moved back to Massachusetts and I had my son in April of 1993. It was really tough because I didn’t have a job.

Two parents spoke of the previous loss of a child due to miscarriage, and the grief associated with


it as contributing to how they thought their experience might be. SB, a mother of a 23-year-old

son with ASD, who is a middle child, shared:

We lost our first baby. It was a daughter, and she was stillborn. They found that she had a knot in the cord… And again, all that grief that we had faced with our daughter a couple of years earlier, it was like, this can’t be happening.

MC, a mother of a 26-year-old son, related the concerns she had about her father’s health during

pregnancy:

My dad had massive heart attacks, and he was in congestive heart failure and kidney failure. And I got pregnant probably October, November. [Son] was born in June. My dad died at the end of April, six weeks before [son] was born. And it was clearly a very stressful time. I remember my doctor being very concerned about how I was gonna deal with the stress, and at one point it became very clear to me that there was only one place to put my energy, and that was the baby, and that my dad was gonna die. There wasn’t anything I could do about that, and, yes, I felt terrible.

Parents shared that some of their character traits possibly contributed to their experience of the

transition to parenthood. These included inflexibility, dominance, being judgmental and critical,

and having a ‘victim mentality.’ MO, a mother of 22-year-old daughter, reported that her ‘victim

mentality,’ and her inflexibility and judgmental attitude towards others had contributed to her

parenthood experience, especially when circumstances did not go the way she wanted or hoped

for:

I was more the person … victim person. I was always thinking that life is not fair and thinking that – or getting angry or upset every time I couldn’t get things or couldn’t have people thinking the same way that I was thinking. I mean, for me what’s very difficult to deal with people who think different than me… [and that’s why] I didn’t accept her [daughter with ASD] because I wanted her different. And I said, “I love her,” but at the time, it was not her. I was loving an ideal, something that was not her.

EW, a father of a 19-year old son with ASD, shared about his wife’s personality ‘issues’ that made

his life and parenthood experience unbearable:

I would say that [wife] not on the scale of normal. Let’s put it that way. She’s a very, very, very high-strung person […] judgmental, and so critical, and so harsh with me that it is very, very debilitating… I’m never shy to say that if I would’ve done to her what she did


to me, I would be in jail for abuse ... So, when I was able to take [son with ASD] and just deal with him by myself, things were actually a lot better for me, and I think for him too. Difficulties with the Birth Process. Eight parents shared their difficulties during the birth

process, such as the baby being breech, enduring a long labor, or having an emergency C-section

with a long recovery time. TS, a married mother of an 18-year-old daughter with ASD, now in

college, shared, “It was a very difficult delivery. She was nine pounds, 14 ounces. I couldn’t get

her out; it was an emergency C-section. They thought it was going to be a hysterectomy.” BK, a

mother of a 20-year-old son with ASD, reported that her son was in breech during labor and later

was in NICU:

They tried to turn him around and, um, it was my first, you know, child and so it was very tight, so they couldn’t do it. And it felt like a séance to me anyway… He came out though, um, and they put him in the NICU because… skin color [anoxia]… they thought that something wasn’t right, so they had an observation overnight.

Difficulties during birth were also reported by EW, a father of a 19-year-old son, who shared

regarding his wife’s birth process:

It was her first child. He was C-section. And one of the things that I will say, it was a very difficult birth. She was in labor for three days, and she was already late. She was, I think, a week or two weeks late already from the expected due date. And then they decided to do a C-section. I think many things that happened, if we would’ve known what we know today, wouldn’t have happened that way.

Difficulties with Adjustment after Birth. Parents reported a wide and diverse array of

post-birth challenges, including lacking parenting skills and the need to learn to parent, navigating

own and spouse’s reaction to the child, managing the relationship with the spouse, managing own

life stage, such as being an older parent, spouse’s abandonment after the birth of the child,

managing simultaneously own and the baby’s health, balancing career and parental role, pressure

to provide for the family financially while balancing new parent role. GB, a mother of an 18-year-

old daughter with ASD, shared her memories of a strain developed in her marriage when her child

was still very young:


I remember my ex-husband was just like, ‘When are you going to pay attention to me? You’ve had this baby. You’re having a birthday party for our four-year-old. Your sister’s here. When are you going to pay attention to me?’ That was difficult.

SB, a mother of a 23-old son with ASD, shared about difficulties with keeping her career going

after her child was born:

When [son] was born, he had a lot of medical issues, and so I ended up quitting work. Couldn’t do well at both my jobs, so I had actually been off work for about 20 years when I recently accepted a job with the local school district here. I was a teacher.

Stressors Related to Parenting a Child with Chronic Illness and/or Disability

Parents reported that, in addition to the stresses experienced by parents in general, they are

facing extra challenges and stressors that are related to rearing a child with chronic illnesses or

disabilities. These include stressors of chronic caregiver role, changing life priorities, life roles,

and family relationships, child’s multiple medical, especially neurological, challenges, lack of

social support and isolation, and compounding nature of stressors.

Chronic Caregiver Role. Parents reported that taking care of their chronically ill child

became a highly demanding and on-going, 24hr/7 days a week, job. E.g., WB, a father of a

daughter with ASD, shared about high stress and anxiety due to attaining highly demanding full-

time caregiver’s role:

Well, definitely added a lot of anxiety. I don’t know. I guess she definitely made me focus more outwardly. …. But just more focusing on caring for other people and looking at their needs rather than being more self-centered. I know, when I was younger, I definitely was more self-centered than I am now. And that’s gonna be natural with being married, having kids in general. But I think it really comes into focus when you’re caring for somebody in a lot of ways. Patience is a big one, actually. I’ve always been a very impatient person. And I’ve had to learn a lot of patience with dealing with her.

SB, a mother of a 23-year-old son with ASD, shared:

But that [condition] was really kind of a confirmation that I wasn’t going back to work for quite some time, because I knew that, not only medically, he was at appointments all the time, but now I knew I had a huge challenge in terms of getting him through school…


EW, a father of a 19-year old son with ASD, recalled: “I’m, in retrospect, fortunately retired

because taking care of our son has pretty much become a full-time job… because if there’s very

little services for young people with disability…”

Changing Life Priorities, Life Roles, and Family Relationships. Parents reported

changing life priorities and restrictions placed on life roles in addition to chronic caregiving. This

included decisions regarding participation in the workforce, re-prioritizing life roles and

relationships, especially with typical children in the family, and changing parenting roles, role

reversal, and preparedness for role obligations.

Self-imposed restrictions in participation in the workforce because of the need to dedicate

all time to their child’s care contributed to increased distress of some parents. GP, a mother of a

24-year-old son with ASD, shared about her decision to become a stay-at-home parent:

When he was first born, I took the maternity leave and then got a nanny and went back. Got a promotion and all this other stuff. But … when we got the diagnosis, I just sort of felt like, there is never going to be another company or situation that’s going to need me more than he does…

EW, a divorced father of 19-year old son with ASD who is closely involved in his son’s life,

described putting on hold his personal life because of chronic care for his son with ASD:

And now, I don’t really even date or anything like that because it’s just a waste of time. I know what’s gonna happen, and I have to devote pretty much as much as I can to [son with ASD]. And yeah, not easy at times, but I’ve very, very clear that it’s my priority. … I had a very good relationship, but ultimately, she said she can’t take it anymore because it’s – to put it kindly – she realized that she was never gonna be No. 1, and she kind of said, “I can’t do this anymore unless you’re prepared to give me more time.” And I said, “At this time, this point in life, I can’t.”

AF, a mother of a 24-year-old son with ASD, who now contributes greatly to the special needs

community, described the experience of her making choices of prioritizing the chronic care for her

child with disability over the care for her injured spouse, and that their marriage suffered because


of this: “You have to do what you have to do. The neediest person kinda … you know… [gets

care, and] there’s a child that needs care. …Our family split…”

Some parents reported a negative impact on the relationship with other typical children in

the family. The same mother, AF, shared:

So then when my husband got hurt, now her [the typical daughter’s] father was taking my attention, and her brother [with ASD]…. She doesn’t really like me. But she… she was the least needy. …My daughter hasn’t spoken to me in 8 years… [since] her second year of college … who is she gonna be mad at? She can’t take it out on her paralyzed father… she’s done taking it out on her autistic brother…[so she has to take it on me].

Another mother of a 23-year-old son with ASD, SB, reported regrets of not spending time,

“ignoring,” her other children:

So, high school was a huge challenge for me and him as we really spent hours and hours and hours trying to get him through school. And in that regard, I have some regrets, because I think I ignored my other kids to some extent while I had to get [son with ASD] through... But it’s been hard for them. The squeaky wheel, you know. I’ve been told from both of them that I’m not even sure how they would have put it, but that [son with ASD], not is my favorite, but I mean I spent more time with [son with ASD], so the other two probably didn’t get as much of me as they should have. Child’s Multiple Medical Especially Neurological Challenges. Children’s

developmental and medical issues during early childhood negatively impacted the parenting

experience. These included developmental delays, gastro-intestinal issues, clubfoot and other

medical issues, such as sleep apnea. BK, a mother of a 20-year-old son with ASD, reported dealing

with some of her son’s medical issues:

When he was in preschool, we put the kids in like a soccer camp at the Y or the JCC and [son] was just having a rough time with his, you know, with his feet. We went to the hospital and they said, “Oh, you have this like really horrible syndrome. He’s never going to walk again. He needs a, like, a walker.” So, we’re like all terrified and then we brought him back for a follow-up, they’re all, “Oh, he’s going to be fine.” We’re all, “Oh, God.” You know?


Some parents described their stress heightened because they feared neurological disabilities, which

implied problems with cognitive or/and emotional development. SB, a mother of 23-year-old son

with ASD, shared:

And especially, even in my early research on these different potential disabilities, we were always pleased to find out that most of them were just simply physical and weren’t related to any neurological issues, which was our biggest concern.

Stressors Related to Parenting a Child with ASD

In addition to the stressors of rearing a child with any chronic condition or disability,

parents of children with ASD report a unique set of challenges and stressors related to parenting a

child with ASD. These include pre-ASD diagnosis and diagnostic process related stressors, ASD

symptoms as stressors, ASD comorbidities as stressors, parent’s own ASD as a stressor, and post-

ASD diagnosis related stressors.

Pre-ASD Diagnosis and Diagnostic Process Related Stressors. Parents shared numerous

factors related to the time before the diagnosis of ASD that impacted their parenthood such as

perception that something is wrong, lengthy process of diagnosis, and lacking clarity about the

diagnosis and its implications.

Perception that Something is Wrong. Parents reported that they had an intuition that

something was “not right” and were concerned that their child will have neurological challenges.

AF, a director of a school for children with ASD and a mother of a 24-year-old son with ASD and

a typically functioning daughter, shared her intuition despite a professional’s feedback, “… but

my mother’s gut said there’s something not right with my baby.” GB, a mother of an 18-year old

daughter, from North Carolina, shared her experience of having her intuitions validated by the

doctor:

I went back to our doctor, and he admitted that he had flagged her chart because she wasn’t sitting up by herself. We started poking around, investigating things. He thought it was


maybe a hip problem, so we did an X-Ray. Then, I remember one day, I called him and I said, “Dr., I don’t think it’s a hip issue. I think it’s neurological.” He said, “Yes, I’m starting to think it’s neurological, too.” She wasn’t sitting up at six months or doing much of anything. She was listing to the side in her highchair and also in her stroller. I really started to worry. We had a neurologist check her out. I think everyone was afraid to say the word autism. Lengthy Process of Diagnosis. Nine parents reported that the process of receiving the

diagnosis was lengthy, and the long process was the ‘hardest time.’ More than half of these parents

reported that they were actually relieved once they received the diagnosis, because the long process

was over, their suspicions were finally confirmed, they had something concrete to identify with,

and they had a direction. AF, a divorced mother of a 24-year-old son, shared her perspective on

finally receiving the ASD diagnosis:

We knew what it was…I always kept saying why… what is it. So, it [the diagnosis] gives you peace of mind, a starting point. It gave me a rock, the foundation from dealing with… I am gonna research and look in the box, out of the box… there are so many families that are so afraid to use the term in paperwork and I tell them, it is your passport if you move about “the country” …with this term, you get services, you get to help when you get the label. Lacking Clarity about the Diagnosis and Its Implications. Parents described the lack of

clarity that led to confusion that they experienced during the time they were seeking answers about

their child’s challenges, needs and care. More than half of parents described the lack of clarity

about the diagnosis itself, specifically whether the issues were related to more medical or mental

health challenges. SB, a mother of a 23-year-old son with ASD, shared the difficulty obtaining a

clear diagnosis due to other challenges her child had: “Even though I suspected he was on the

spectrum, nobody would confirm that, just because of his medical issues that delayed his

development.” Another parent, DE, a father of a 23-year-old son with ASD, shared: “We started

engaging therapists, psychologists, anybody who we thought would help understand. And it


became a very heartbreaking, desperate process, because he didn’t have a profile that fit any one

specific diagnosis very well and nothing seemed to help.”

Parents reported frustrations because of professionals lacking appropriate knowledge about

ASD diagnosis and them having varying opinions and assumptions about the nature of their child’s

challenges. For example, parents were given feedback about their child’s challenges based on their

child’s gender. Parents of boys were often told that the behaviors were typical of a boy’s behavior.

AF, mother of a 24-year-old son with ASD, shared, “He didn’t speak. He didn’t walk on time,

everything was delayed. And I went to the pediatrician and they kept telling me I had a boy, and I

had a girl, [so] don’t compare them, they’re slower…” At the same time, parents of girls shared

that signs of ASD were overlooked by professionals (because there are more boys who are

diagnosed with ASD), and that having a female child with ASD poses another level of difficulty

in finding clarity about the diagnosis. TS, a mother of an 18-year-old daughter with Asperger’s

stated:

It wasn’t a lot published about girls and just how that diagnosis manifests itself. A lot I read was like the rigidity or people obsessed with trains or locomotion. [Daughter with ASD] never was like that…We were grappling, too, with really finding information around Asperger’s for girls and how that developed or how that would inform our work. Trying to find a neuropsychologist who actually knew diagnostically how to work with her.

Other parents lacked clarity about where their child fit within the spectrum of “disability” and

ASD, leading to challenges in finding placements for care and schooling. GP, mother of a 24-year-

old son with Asperger’s, shared her experience finding an appropriate educational setting for her

son:

So, I called to find out about what they offered and my whole experience with school systems are really – I’m pretty jaded. They said to me, “Well, we do have a sort of preschool program, but it’s only for kids who have more severe disabilities and you said that your kid is mild on the autism spectrum.” I said, “Yeah, but it’s kind of like having a mild heart attack. You don’t need emergency care, but you still kind of need the stuff that you deal with.”


ASD Symptoms as Stressors. Parents reported that their child’s ASD symptoms became

the stressors specifically, their child’s challenging behaviors and character traits, as well as their

child’s social skills deficits.

Parents shared that school avoidance, suicidal ideation, aggression, regression of

developmental gains were the hardest to manage, especially as they grew to be more severe, and

therefore, traumatic. EW, a father who cares full time for his 19-year-old son with ASD, shared

the experience of his son’s aggressive behaviors:

...They [inappropriate behaviors] would turn aggressive. Now, [son with ASD] is the sweetest, sweetest guy in the world. He’s incredibly artistic, and he’s amazing. But, well, he always had meltdowns. But the meltdowns turned into sort of a form of aggression. He went from little baby to adolescence, if you know what I mean.

DE, a married father of a 23-year-old son with ASD, shared his experience of his son’s violence:

The most important or the most challenging thing was the difficulty of dealing with a very explosive child who was willing to be violent if he was that agitated. Because you can do all the – you can acquire all the skills for dealing with your sons. It doesn’t matter. You can acquire everything. But it’s extremely difficult, especially in the heat of the moment, as a parent. It’s extremely difficult to deal with a kid who is oppositional and willing to be violent to get his way.

Some parents also identified some of their child’s ASD-related character traits, such as rigidity,

neediness and desire to please as contributing to parental stress. TS, a mother of an 18-year-old

daughter with ASD, shared how her daughter’s rigidity was misunderstood by the school staff:

The problem with the school, especially in middle school, they saw her as obstinate and it was really more her rigidity and she was very, very much wanted to please. She was just misreading all the non-verbals. She might correct a teacher and then the teacher would think she’s being obnoxious.

Most parents expressed their frustration with their child’s lack of social skills and communication

in and outside the family circles. MC, a married mother of a 26-year-old son with ASD,

remembered:


He didn’t sleep through the night for a couple of years... And I didn’t do the fiberizing thing because …there’s something wrong with this kid. I don’t know what it is, but this kid doesn’t soothe himself. And I also felt he wasn’t communicating the right way, and we had a tenuous connection to him. The connection he and I had always had was touch, and as much as I couldn’t stand him sleeping with us, what I couldn’t stand more was losing that connection of touch.

DE, a father of a 23-year-old son with ASD, reported:

When our son hit preschool, we noticed that he was not very social, didn’t react to things the same way everybody else does, sometimes was hiding in the classroom. We engaged a behavioral therapist and I remember, in a nutshell, what she said was, “It’s not you. It’s him.” ASD Diagnosis Comorbidities as Stressors. Parents reported that ASD comorbidities,

other medical and mental health conditions that their children were suffering from, became

additional stressors in parents’ life. These conditions included various gastro-intestinal issues,

sleep challenges, neurodevelopmental disorders like ADHD, and mental health conditions like

OCD, depression, anxiety, and panic attacks. MO, a mother of a 22-year-old daughter from Japan

stated:

She couldn’t sleep at that moment. She slept maybe each two days or three days. So, it was escalating, escalating, escalating. So, also, when she went to the high school, it was the same. The teachers were more soft, so in some way (she) relax in some way, but panics were most every day. Cryings were every day. So, when she was 18 years old, one month before she graduated from high school, it was like chaos in my house because we couldn’t sleep at night.

More than half of the participants shared that their child was given multiple diagnoses in addition

to ASD, especially because of the mixture of various behavioral and emotional challenges. This

created significant parental stress. WB, a father of a 21-year-old daughter with ASD, shared:

I just feel like – and this really speaks more to the anxiety than the Autism, but one of the big frustrating things that we’ve had is that if our daughter had cancer or a heart condition, there’s prescribed procedures and solutions. And you go to a specialist, and they can help you solve that problem. But when it comes to dealing with anxiety, depression, especially in people on the spectrum, there’s no roadmap.


WB, a father of a 21-years-old daughter with ASD, shared about difficulties with managing

anxiety in his child with ASD, especially during life transitions:

So, it felt pretty textbook growing up. Just starting showing the symptoms of autism when she was in kindergarten, first grade. And we got the diagnosis which helped us understand things. And then for several years, we did a few interventions and kinda had things back on track I’ll say in terms of development. And then when she hit puberty, things really went off the rails. I’m probably getting ahead of you, but anxiety and school avoidance came into play. And really struggled to get her through middle school, high school. She’s now actually successfully attending college. But anxiety remains a major concern. So, in a lot of ways, I feel like we didn’t really feel significantly impacted by autism as a family until she hit puberty. It was very manageable up until then. And then after that, it’s become a lot more challenging.

LT, mother of a 25-year-old son with ASD, who is living in Massachusetts and runs a mentoring

program in school, shared her experiences dealing with her child’s OCD, in addition to ASD

symptoms:

I was becoming very concerned and went in to the doctor and they reviewed his milestones and everything and said, ‘We don’t know what’s going on. We think you should take him to a child psychiatrist’. At that point, that was the first fork in the road that took me down a really bad path with him because he did not need a psychiatrist. He needed somebody who knew about developmental issues, but I didn’t know that. I’d never had any other kids and I was like, maybe I’m doing something wrong. I think I’m doing the right things with him and he’s just getting more and more disturbed and distraught and upset. I just didn’t understand it. I did not understand what was going on at all, so I went and saw the child psychiatrist and his conclusion was that maybe he had some OCD thing going on. Parent’s Own ASD as a Stressor. Two parents identified as being on the ASD spectrum

and two parents shared that their spouse was on the ASD spectrum. DE, a father of a 23-year-old

(eldest) son with ASD, self-described as having Asperger’s traits, and shared how his difficulty

with social interactions and social cues has impacted his self-perception as a parent and his ability

to support his spouse:

I found though that, when our first son was born, immediately I felt everything I was good at was irrelevant. Everything I was no good at was critical. So, it was definitely a very difficult adjustment, especially for me… [My wife] also reacted to what she perceived as my Asperger-y traits. And that didn’t help things either.


MC, a married mother of a 26-year-old son with ASD, reported about her spouse:

He just struggles to be social. So, his friends are my friends. He hasn’t kept in touch with any friends. His friends are people within his family. He’s very close to the family. I used to think he was quiet merely because he comes from this giant Sicilian family, and nobody can get a word in edgewise. He’s just quiet until he’s socially comfortable, and then he has a wicked sense of humor. But he's also very inflexible. Like, if I move things in the kitchen cabinets around, he doesn’t get mad, but he’ll freak out and rearrange them back. He hates going to parties with me, so I go solo. I’ve just learned to do that over the years. It’s easier than dealing with him. He procrastinates. He has the executive functioning skills of a gnat. For example, having him go grocery shopping and plan meals and make meals is interesting. Trying to get everything in a meal to happen at the same time doesn’t work. Casseroles are great if they have very clear-cut directions. We have this little marital joke which is [husband] can do concrete deliverables. And so that comes from kind of my program management background. I need to give it concrete deliverables, don’t I? He’s like, yes. So, as long as I break it down in concrete deliverables, like, okay, when you cook a pot roast, the hard vegetables take longer to cook. Put them in first. …he can still make me insane. Post-ASD Diagnosis Related Stressors. Parents reported that after receiving the diagnosis

of ASD for their child, they had additional stressors to deal with, related to unfulfilled expectations

and hopes, being responsible for all medical decisions, lack of social support or professional

support.

Unfulfilled Expectations and Hopes. Thirteen parents acknowledged that the reality and

experience of parenting differed from what they originally anticipated. Parents discussed

unfulfilled expectations and hopes related to parenthood and family experience, as well as related

to their child and ambiguous loss.

Parents reported unfulfilled expectations of “normal” parenthood and family experiences,

which included engaging in normative parenting activities such as attending athletic games with

their child, socializing with other parents, and experiencing their child achieving developmental

milestones. Some parents shared that they anticipated the experience of parenthood to fulfill a

dream they had about having a tight knit family of their own, while in reality, the family was not


close because of their child with ASD. DE, a father of a 23-year-old son with ASD, shared:

Our hopes were simply to have a normal child and have normal parenting experiences. And being as old as we were, we didn’t have a lot of stars in our eyes about it being an unalloyed joy. We had some idea just from living life as to what might be involved. And we really – I suppose we probably had the same primal, evolutionary drives that every parent does as to why they want to have a child. But we were looking forward to the entire experience basically as coming to a more intimate understanding of the human condition.

Others reported that they had a “romanticized idea” that having a child would be easy-going, when

in fact the parenthood experience resulted in the parent doing things they did not think they would

have to do, such as advocating for their child and being active in meeting their child’s unique

needs. LT, a mother of a 25-year-old son with ASD who manages a mentoring program shared:

I had kind of a romanticized idea of what it would be like to have a baby. You know that ended pretty quickly… I’ve had to be such an advocate for him in a lot of ways that I could have never have done for myself; I’m really very introverted and very…I’m not a pushy, aggressive person in my own world. When it comes to him I really had to develop that part of myself. I never would have otherwise because it’s always for me just been easier just to sit back and let things happen you know.

A few parents shared their unfulfilled wishes to engage simultaneously in their career and the joys

of parenthood. LT, the mother of a 21-year-old daughter with ASD who is in college shared her

expectations of how she would function as a working parent:

I didn’t think it was going to be nearly as all-encompassing as it was. I thought I would continue to work and have a nanny, and that I would come home from work as the career woman. And I would spend a little time, read them a book, be a loving mother and then put them to bed, get up the next day, and do it all over again. That the nanny would do all the work, and then I would have the nice last hour. That’s really what I thought.

The unfulfilled expectations of the typical parenthood experience were expressed by half of the

participants as feeling jealous of other parents who had typical children. SB, a mother of a 23-

year-old son with ASD, compared her experience of being a parent with what she perceived as

much easier experience of other parents:

One of the things that’s been really hard for me in terms of looking at parenting is seeing other families or other people who haven’t had the challenges, at least that I know of, and


they just think everything works out fine, their kids all turned out great, they’re all college-educated, good careers, and I kind of have some struggles with that, with some jealousy, …it so easy for other people…

Parents also shared that one of the biggest challenges, which generated a lot of grief and anxiety,

was the unfulfilled expectation of their parenthood experience in terms of the family’s interactions.

LT, a mother of a 21-year-old son and 19-year-old daughter with ASD, recalled:

I ask myself would I even change it, if I could, and put them not on the spectrum. I think I would just because their lives would be so much easier. It’s just easier to be neurotypical than not be neuroatypical, so I think for their sake I would change it. And for my own sake in terms of anxiety… For their own sakes, I wouldn’t have wished this. It makes life inconvenient.

SB, a mother of 23-year old son with ASD, shared about unfulfilled expectations of relationship

between the siblings:

… having lost our first child, we kind of figured we had borne the brunt of any challenges with childbirth and rearing…So, my hopes and dreams for him were very similar to what my older son, who was very precocious, learned quickly, just a joy. We had the same dreams and that they would be buddies and friends and close enough in age to hang out together and stuff. Parents reported different expectations of their child, as well as feeling the loss of the child,

although their child was physically present. This ambiguous loss (O’Brien, 2007) encompassed

loss of hopes, image, and relationship with their child that will not happen. Parents understood that

resolution of ASD was not possible and that the outcomes were unpredictable or plain bad, as their

child will never be independent and will probably not have family or get married. AF, a mother of

24-year-old son shared after her son was diagnosed with ASD:

And we got in the car, and I just started hysterically crying thinking he’s retarded, because there was no word…it wasn’t like today. And I thought of Rain Man (laughs), I thought, he’s never gonna have a job, I thought he’s gonna have such a hard life. I thought is he gonna wind up living with me? And we went home and I…I know…we went home and we went into the living room and we fell asleep on the couch and when our older daughter had come home…they were at their grandparents babysitting when we went to get the results…she said, did somebody die? Because you guys don’t look good and you are


sleeping in the middle of the day. Very perceptive little girl… because somebody did die. The hope and the promise of my baby.

GP, a mother of a 24-years-old son with ASD, also shared the experience of broken expectations

of the child’s bright future:

Because he was so far advanced early on, it raises a parent’s hopes about, “My child is gonna be so brilliant. Maybe he’ll go to Harvard, be a CEO of a company or something like that.” And then you get the, “What do you mean he has special needs?”

The same mother, shared her stress of imagining the grave future for her son:

I don’t remember how I got that statistic but I remember he was crying – I think he was summer camp, after kindergarten or something like that but he was supposed to get a summer program so they were in a town camp and I remember reading some statistic about how a lot of them commit suicide and I’m like my kid is in kindergarten and I have to worry about suicide. So, I’m crying over that. So those were kind of difficult times.

Some parents reported not being able to let go of their rigid fixed expectations of who their child

will be and of their child’s abilities to navigate the world’s challenges. They shared their wishes

for their child to be healthy, neurotypical, extroverted and “normal.” LT, a mother of two children

on the ASD spectrum, reported, “I expected extra extroverted children because I’m such an

extrovert. My husband’s an introvert, but I thought, ‘Seriously? My personality is a way stronger

personality than his.’ So, I definitely thought I was gonna get extroverts.” SB, a mother from

Michigan of a 22-year-old son with ASD, shared:

My expectations were really high. And the most challenging part was probably to have to lower those expectations at different points …, and kind of come to the acceptance that there were going to be some limits to where he would go ….

Parents also reported that they had to manage their hopes and expectations regarding their child’s

academic delays and the unmet expectations they had for their child’s academic success. SB, a

mother of a 23-year-old son with ASD and a school administrator, shared:

School was super challenging, because I was a good student and I loved school, and it was just – I had a lot of communication with his teachers, and just not really knowing what his potential was in school, because the spectrum – some of the kids are really super bright.


Not really knowing how hard to push him and how much to expect from him. Being Responsible for All Medical Decisions. Parents of children with ASD reported a

great burden of being responsible for medical decisions related to management of ASD, on top of

the chronic caregiver role, mostly because of conflicting messages and recommendations they

constantly received from professionals that caused non-trusting relationships with them. Parents

felt being put in a position of medical doctors or managers, which was a great responsibility and a

great stressor. WB, a father of a 21-year-old daughter with ASD, shared:

...And you go to different types of doctors and talk to them, and nobody sees the whole purpose. You go to one doctor, and you get a prescription for some antidepressants. And you go to someone else and get some general counseling. You go to someone else and get some Autism counseling. The burden falls on the parents to become the general practitioner, the coordinator of care. And over time, we learned that job and became more proficient at it. But we weren’t prepared for it or trained to really care for the complexity of all the different interrelated mental illness issues that come up. Lack of Social Support. Parents reported lack of social support from family members,

society and peers as significant stressor in their life, after the diagnosis was established. Eight

parents shared experiencing criticism, judgment, unhelpful guidance and sometimes bullying even

from people of their close circles like their spouse and family members. Most participants reported

that the fathers or/and other family members were not accepting the diagnosis of ASD or having a

poor reaction to it. Most mothers shared that their husbands had difficulty accepting the diagnosis;

some fathers were supportive in spite of the difficulty, while others were not. AF, a mother of a

24-year-old son with ASD, shared that her husband would say:

… why do we always have to talk about [son with ASD]? …he’s gonna outgrow it……he’s just gonna outgrow it. Get him a tutor…he will outgrow it...I think [it is] what it is for all men. It was his ego. It was not a partnership in parenting.

The same mother also facilitates support groups with fathers of children with ASD and shared

her observations:


How about hearing a father say,… ‘I don’t make autistic babies.’ These men cannot accept their babies. They’re [the babies] defective. They can’t. Now, last year, at my parent workshop, I had one father. This year, I had three. That’s huge. And when they come, I make a big deal. And so do the mothers.

Six parents shared that other family members had a poor reaction to the child’s diagnosis, as they

did not accept the diagnosis, while others demonstrated a misunderstanding of the child and/or the

challenges involved with rearing the child with ASD. WB, an IT professional from New

Hampshire and father of a 21-year-old daughter with ASD, shared:

It took both of our families a while to come to grips with and accept what she was. And I don’t think either of our families understand just how challenging it can be …when we’re out in public and stuff, [daughter with ASD] holds it together very well. Her meltdowns are more commonly at home. So, a lot of people don’t see that and probably don’t realize the level of anxiety…

Parents reported experiencing lack of social support from the larger society because of judgments

of unacceptable child’s behaviors. They also experienced judgements even if the child did not

show any inappropriate behaviors but was identified as having special needs and was casted out

of activities with other kids. AF, mother of a 24-year-old son with ASD, reported this incident:

He was in kindergarten. I held him back so he would repeat it. He went into kindergarten with a para, 1:1 aide. School bell rings, all mommies line up in hall and you get your kid. I’m standing there, I don’t know who’s behind me, I hear two women. I don’t know them, until I hear them say the teacher’s name, and make sure you don’t make a play date with the new kid, [son with ASD], he has a para, there must be something wrong with him. That killed me. That killed me. Killed me!

Parents also described lacking support even from other parents of children with similar challenges

or on the spectrum. SB, a mother of 22-year-old son with ASD, shared:

My biggest challenge at that time was really no one understood what I was going through. And I think it was shortly after age 10 that [son] started getting involved in Special Olympics, and I thought that for me that would be a great thing too, because there would be other parents there, carting their kids there, and other parents who were facing similar situations. And I didn’t find that to be true. A lot of the people I met – most everyone I met through the parents of kids that he participated with, they were not like me. They were not necessarily educated. Some had disabilities of their own. And so, it was really a challenge to not feel alone, like I was just blazing this trail by myself. I don’t even know at what


point it was, but I did, finally I was able to connect with a few parents who were similar and had similar challenges, which was huge, just in – just even having someone to listen who understands. Lack of Professional Support. Parents reported that after receiving ASD diagnosis for their

child and all the way through their family’s journey, they experienced lack of professional support

from the medical, educational and social work community, as well as negative predictions from

various professionals about their child’s and their family’s future.

Parents experienced lack of professional support from the medical community in terms of

lack or inadequacy of psychoeducation, lack of support in decisions to medicate the child with

ASD, and lack of knowledge about effective interventions for children with ASD.

Parents shared that they experienced lack or inadequacy of psychoeducation in the medical

professionals in relation to the diagnosis, its challenges and magnitude, as well as implications for

the child’s and family’s future, and treatment options. This left many parents feeling shamed,

abandoned and betrayed. MO, mother of a 22-year-old daughter shared, “I remember when doctor

told me, ‘Because your child is not only autistic, she’s retarded.’ Those messages, as a parent, were

very painful.” BK, a mother of a 20-year-old son with ASD, spoke about the psychiatrist they

consulted who inferred that it was something she was doing that caused her child’s challenges. She

also shared, “The first psychiatrist we had was horrible. He told me I should quit my job and spend

more time with my son.”

LT, a mother to a 21-year-old son with ASD and currently a social life coach to adults with

ASD, shared difficulties in obtaining the needed information about caring for and parenting a child

with ASD:

Not that many people knew this stuff. This would have been 1999, 2000. This was very early on, and so there weren’t even as many programs as there are now. And Michelle Garcia Winner’s Social Thinking [a curriculum in the treatment of individuals with social


learning challenges], it took me a couple of years to find her... There was just a lot less information...

EW, a father of 19 year old son with ASD, shared being stressed and feeling angry towards the

psychiatrist who was not providing any education to parents, and who was interested only in

charging parents his enormous fees, while prescribing the medications that did not work and even

made the behaviors worse:

At one point, we did go to see a psychiatrist, a private psychiatrist. This was [wife’s] doing. Thousands of dollars. I knew pretty much from the beginning that this guy is full of s--- – excuse my language – because I actually f----g hate him, and he had the audacity to charge thousands of dollars. And [son with ASD] was actually worse. Parents reported pressure from some doctors to include medication in the treatment

regimen for their child to help with more immediate symptoms, like aggressive or impulsive

behaviors, OCD, anxiety, and depression, but they felt that giving their child medication at a young

age might be harmful, looking longterm, and some recalled that it was a “tough decision” to make

on their own. There was no unanimous opinion participants had about the medications and the

short- and long- term side effects. Some of the parents said that the medication had a negative

impact on the child's behaviors, while others reported that the decision was a “last resort,” and the

right medication was supportive and transformative for their child. AF, a mother of a 24-year-old

son and currently a director of a school for children with ASD, shared:

I had to take him to a psychiatrist because he had horrible OCD and anxiety and his team …all said, think about medicine. I was devastated. That was the time when young adults and adults were starting to take SSRI’s [selective serotonin uptake inhibitors are antidepressant drugs that inhibit the reabsorption of serotonin by neurons, increasing the availability of serotonin]. They weren’t like they are today. You only heard about Prozac or Zoloft back then if you were severely depressed. His OCD – it was so apparent. They were explaining to me that it was manifesting from anxiety and that, as his mother, don’t I want to make his life easier, and by giving him the medicine, it would make his life easier. I came home, I was hysterically crying. I see it now, sitting on the steps... I had my head in my hands. He’s just a baby, how do you give a baby this medicine? He was 9 but he was the stature of a 6-year-old, so I never acquainted him to 9. He didn’t look 9 or perform like 9…. He was 6. And we played the medicine games, and … what a difference. In his anxiety,


his OCD. It was the hardest, one of the hardest things I had to do. It would have been different if he was a teenager, but he wasn’t even in the double digits of his childhood. He was under 10. So, the hardest part was the medicine, because he was 9.

Some of the parents shared that the medication exacerbated their concerns or they went against

professionals’ suggestions to medicate their child, and this was an additional stressor for parents.

LT, mother of a 25-year-old son with ASD, shared going against the advice of a psychiatrist they

saw because of her son’s OCD symptoms, “He said he was hyperactive and he prescribed Ritalin

for him. I said no. I don’t think that’s what’s going on here. I don’t want my three-year-old child

to start taking Ritalin…We never did the Ritalin.”

Most parents felt that medical professionals did not understand their children, and were

dissatisfied with the interventions (e.g. Applied Behavioral Analysis and speech services) used

with their children; and this represented another layer of stressors. EW, a father of 19-year-old son

with ASD, shared:

… But I think ABA is, in our case, not effective. I would even – biting my tongue because I was gonna use harsher words.…if you read the history of ABA, and of course, that is the only thing that’s recognized in America by the healthcare, which is also another travesty, needless to say. Parents experienced lack of professional support from the educational community and the

school system in general, as they felt that the system did not provide knowledge to kids with ASD,

while becoming a “babysitting” service, which resorted to regular use of restraints instead of

finding the ways to manage kifd’ behaviors differently. EW, a divorced father of a 19-year-old son

with ASD, shared:

So, having him go to school was really just babysitting for us. But as the years went on, it actually became more of an issue because we would get a call 20 minutes after he got on the bus that the bus had to stop, and the bus aid would call the police, and we would have to come and pick up [son with ASD] off the bus. And then if he got to school, you were just holding your breath that he wouldn’t be put in what they call the Blue Room, which is the room where it’s covered in mats, and he’s restrained. And this would be every week. And so, in 2016, after the winter break, he went back, but we just said, “Enough. We can’t


do this anymore. It’s just insanity.” Every week, it was so impossible because all they would do is restrain him and traumatize him more, and then they threatened us that if this keeps on, they’re going to have to take him in an ambulance to a mental facility. And so, we just said, “Before that happens, we’re just gonna take him out of school…”

DE, a father of a 23-year-old son with ASD, from Massachusetts, who self-describes as living with

Asperger’s himself, discussed his family’s stress related to the school professionals being not

equipped to deal with children with ASD, although there was a formal IEP process in place:

As he went into elementary school, we were basically trying every avenue we could find. He immediately got an IEP, special education in school. Unfortunately, the teachers and staff couldn’t understand him either. The school staff tended to be undertrained, under-supervised. I think that group of people has the lowest level of integrity and the lowest ability to be professional… But [son] flamed out of every therapeutic special education program. It kind of reached a head when he was in fourth, fifth grade. He was acting out. He was terrified. He had a lot of fear. And he started acting out. He was also being violent at home, which we were dealing with, and we started to be afraid for the safety of his younger brother, who was four years younger. But what really brought it to a head was that the school physically abused him by overuse of restraint. And so, we dealt with it every way we could until finally we saw the abuse was not going to stop, basically because the school staff lacked the training and professionalism and integrity to deal with him any other way, in spite of all the requirements of the IEP, which they never really had any intention of complying with. Or, if they did, they had no ability to comply. So finally, we had to hire a lawyer. And it was very clear by that time, I think, to the school that, if we were to file suit, they would lose. And so, it really only took a conversation between our lawyer and the school’s lawyer for the school to offer him a placement in a residential treatment school at their cost.

GP, a mother of a 24-year-old son with ASD, also reported regarding the IEP process and IEP

execution:

I scrutinized the IEPs and wrote beautiful IEPs. In retrospect, I will say I felt like I wasted an enormous amount of time on creating IEPs that the school system did not have the talent to really implement.

EW, a father of 19-year-old son with ASD, shared further that the same situation was happening

in career schools:

He was for a year in a regular school in a special needs class. It was a disaster. Then we put him in a BOCES program, and it was pretty much a disaster all along the road. …They [people who worked at BOCES] were really doing the very, very, very best that they had. But it was completely ineffectual in my humble opinion. And we realized that it


just was a sort of form of babysitting.

TS, a mother of 19-year-old daughter with Asperger’s syndrome, also shared about lack of

professional support at school, and that the school used punishment instead of encouragement,

with children with developmental disabilities:

In second grade, I asked the school what was going on because she was telling me she was starting to hate school and I could not figure it out. I’m like, “Here’s my child, who loves to read. What’s going on?” Come to find out a friend was volunteering in the class and she called me and said, “L’s getting punished. She’s being told to sit at her own table.” She discussed with me the disorganization in the classroom. In retrospect, it was that L tends to – she likes schedules. She likes structure. We’ve always had that in our house because, as two working parents, it’s been helpful. Parents experienced lack of professional support from the social work community, mostly

related to lack of financial planning and transition planning for families of children with ASD.

Half of the parents in the study reported this lack of professional support related to financial

planning was contributing to their stress, as they were not informed about the need to prepare for

possible impending financial hardship while experienced pressure to provide for their family and

their child with special needs. GB, a mother of 18-year-old daughter with ASD, shared her worries

about her financial situation after she divorced because while she was the primary caregiver, her

husband was responsible for the finances, “[Husband] was in charge of working and keeping the

financial support going, but he really couldn’t join in as a part of supporting [our daughter] … I

was terrified financially of what would happen to me after the divorce.” TS, a mother of an 18-

year-old daughter with ASD and two other – typical – children, reported financial burden imposed

on the family when her husband, the primary bread earner lost his job: “He [husband] had been

laid off when we took out – we had to remortgage the house. The financial burden, too, with

fighting for her [daughter] – it was suffocating.”


Six parents shared an additional stress of creating extra financial security to be able to hire

private help, advocate for their child’s needs and stay home to provide child care while their spouse

worked outside the home. Parents who had the financial means to have one parent stay home and

care for the child felt fortunate to have had such an opportunity to be involved with advocating

and taking close care of their child’s daily and therapeutic needs. Other parents who were able to

hire private help reported that they could continue working and delegate some of the daily needs

to people they trusted, such as babysitters and paraprofessionals. SB, a mother of a 23-year-old

son with ASD, who is her middle child, reported:

I was lucky in that my husband has a good job, and I didn’t have the pressure to have to work. I mean, that was a huge blessing through that entire 20 years. I was able to be there when I needed to be. Most parents reported lack of professional support in transition planning and services,

especially transitioning from childhood to teenage years, and then from teenage years to adulthood.

Some parents shared that the middle school years were the hardest time, while others reported that

high school years were most difficult. The perception of difficulty during these times was

reportedly due to the nature of the transition, increased academic and social pressures, lacking

resources in coping with transitions and decreased consistency in outside support as the children

grew older. Some parents shared that as children aged, their behavior became more rigid, anxious

or challenging. WB, a father of a 21-year-old daughter with ASD, reported:

I’ve even been told by other fathers with younger kids on the spectrum that autism’s not something that ever goes away. So, we thought after several years of intervention and some social skills work that we’re like, “Okay. She’s on the right track. She’s gonna develop normally from here.” And then adolescence hit us like a tsunami. And I had wished now that if we had kept – because we had stopped all services for some time in probably early middle school. And then we were just shocked when the anxiety and the school avoidance hit us, hit her, and just completely rocked our world. So, if we had kept – that was definitely a big regret I have is that if we had kept services in place, if we had read more and prepared for that, I feel like we could have weathered that a lot better.


Parents also experienced stress related to lack of planning and services during times of transition

from their child’s pre-teenage to teenage years, and from teenage years to adulthood. Specific

issues related to transition to college included challenges with student housing, socialization

support, and special needs resources support (supports that aimed to help college students with

ASD). EW, a father of 19-year old son with ASD, shared:

If I can wave any sort of banners, that would be one of the ones that I would like to get across that the services, assistance options are little to none when these people age out of the school system……That [respite services that were authorized by the Office for People with Developmental Issues] took about three years. Let’s just say that the ultimate approvals came through last year. It’s the middle of March. We have not seen one single thing ever come of it. Nothing. No benefit, no nothing. There’s an agency that you’re given a case worker. The one case worker suddenly disappeared. We got another one. I even was speaking to her yesterday. I said, “Is there anything happening with getting a respite? Somebody who can come in?” And she’s, “Yeah, I’m not feeling well. I had a death in the family.” This is how it goes on, okay? I very, very much sympathize and empathize, but that wasn’t exactly the topic of the discussion. It’s unbelievable. Unbelievable.

Parents also shared their insights about how important their child’s socialization is to minimizing

their isolation at the time when they are adults and to fostering their transition to independence

later on. PS, a mother of a 21-year-old son with ASD, shared about her son being not prepared to

life after college because he could not figure out how to connect socially:

He was in college and I still didn’t think there were much issues going on. Until he graduates college, and realized socially he could not figure out how to get a job. He can’t interview, he doesn’t have eye contact – yeah. It was really difficult that he lost job after job too, because he couldn’t follow the directions, or that kind of stuff. It was so painful to watch my kid go through that rejection. And basically, he continues to go through that rejection.

CB, a semi-retired freelance editor and father of a 27-year-old son with ASD, also shared about

stress related to the transition services:

I think the main thing that came to mind there was that all I knew about transition planning was what I had been told by the school that [son] was attending in his mid-teens. And they did want to have [son with ASD] attend IEP [Individualized Education Plan] meetings from the earliest available point on. And he would be there for maybe five or ten minutes per meeting. And I have no idea whether that was really serving his best interests or not. But,


anyway, the information that I received about transition planning was just so slow in coming my way. And I ended up learning about a school district transition planning liaison maybe only when he was 20 or so. And it was not from his school. And she turned out to be tremendously helpful but that was an example of how hard to come by information really was for me. Lack of support from professional communities manifested also as negative predictions

about the family’s future and the child’s outcomes from various professionals. AF, a mother of a

24 year old son with ASD shared:

When my son was diagnosed, so long ago… and (then) when my husband got paralyzed, the surgeon said, “Your marriage will not survive this.” And I said, “Eh, we survived Autism. We have Autism and they told me that.” So he said, “You have an Autistic child too?” And I said, “Yeah!” And he shook his head and said… you guys are not gonna make it.

The same mother shared later: He was 12 years old, we did another assessment... the psychologist said, “He will have like an hourly rate job and he will probably…he won’t be able to live alone.” That’s what they told us.

MO, a mother of a 22 year-old daughter with ASD shared her experience with doctors and teachers: I have been working with so many specialists about autism – autistic children, and every

time I talk with teachers or doctors or therapists, the way they talk to you, they first says, “Your child will never be able to do this, this, this, this, this...”...those messages, as a parent, were very painful.

Compounding Nature of Stressors

Many parents shared the “pile-up” of challenges that made their life as a parent stressful.

BK, a mother of a 20-year-old son, shared “heaped on” problems related to caring for her child

with multiple chronic issues, “Like people, you know, like life isn’t easy and perfect for everybody,

right? But, the question is, you know, how many problems do you have heaped on? And that was

our problem that was heaped on.” AF a mother of a son with ASD, was also reporting a pile-up of

multiple problems, “I had choices [to make]. I had to triage, is a better word. Look what I had …a

pile up… to deal with.” WB, a father of a 19-year-old daughter with ASD, shared:

Even now, years later, I have difficulty in the mornings. It sounds stupid, but it’s almost


like a PTSD response where I’m just kneejerk reaction like I’m gonna wake up in the morning and have to deal with this because it went on for probably three years at least. So, that without a doubt was the biggest challenge. And then through all that, we’re trying to pay attention and give our younger daughter attention. And that just adds another layer of stress into the situation.

Negative Effects on Parents Rearing Children with ASD

The multilayered compounding stress generated in parents of children with ASD diagnosis

adheres negative immediate and long-term effects, some of which become stressors themselves,

potentiating the stress load and causing more negative effects.

Immediate Effects. Parents reported that immediately following the ASD diagnosis, they

experienced a mix of shock and sadness, anger and devastation, fear and worry, disappointment

and guilt. LT, a mother of a 21-year-old son from Massachusetts, shared her traumatic experience

of ASD diagnosis and the meaning it had for her child’s life ahead, “And so, when they gave him

an Asperger’s diagnosis, and said it wasn’t clear whether he was gonna be able to live

independently, that was just an enormous blow.” Also, immediately after the diagnosis, parents

felt lacking attunement and a bond with the child, and they experienced loneliness, self-blame and

denial. SB, a mother of a 22 year old child shared their lacking bond, “I didn’t bond with him when

he was a baby because of the challenges that I knew he would have. It wasn’t until he had his

surgery when he was 8 months old and we almost lost him that I feel I really connected with him.”

Parents were desperate to find a “road map” and attempted to “fix” or solve problems right

after the diagnosis was made, but found themselves in a great disappointment state when the

immediate fix was not there, and no matter how much money or time were invested in resolving

the situation related to the ASD diagnosis, they were not victorious.


Long-term Effects. Parents reported that long-term effects of their parenthood experience

included isolation and the impact on psychological well-being and mental health, family and social

relationships.

Isolation. All participants shared the experience of being isolated from other parents and

from their own family members, as well as the school system and peers mostly due to the need to

care for their child with ASD that took all of their time. GB, mother of 18-year-old daughter,

shared:

Then, I started getting into the therapies, which meant less time to be with other parents of other children, because they were in playgroups and my daughter was going to therapy. I was much more isolated.… With [first daughter, a typical child], I was very out there. I was just sort of very gregarious, very outgoing. With [daughter with ASD], I remember just sort of withdrawing more and more into myself.

DE, a father of a 23 year-old son with ASD, also reported:

It was extremely isolating. I didn’t develop any friendships with other kids’ parents. I always kind of assumed going into it that – I don’t make friends that easily and I kind of assumed that we would make friends with other parents. We’d have more adult relationships. But it didn’t happen because we were so isolated. We had no one to help care for the kids. We had no crowd that we could run with, for the kids to play with, or anything like that. We were almost totally alone all the time. Because we didn’t have relatives nearby and because of the difficulty of the kids’ conditions.

AF, a mother of a 24-year-old son with ASD, remembered not having any time to have fun

activities, and being isolated, “…and my husband who is an athlete… and my daughter who is an

athlete, they went and did their thing. And me and my boy did therapy or any activity … It was

just me and him.”

SB, a mother of a 23-year-old son with ASD, explained feeling isolated because of not

being understood, “My biggest challenge at that time was really no one understood what I was

going through… I was alone...”


Impact on Psychological Well-Being and Mental Health. Parents reported symptoms of

worsened and poor psychological wellbeing and mental health sometime after the ASD diagnosis

was made. These included: psychological distress, worries and anxiety, fears and depression,

trauma and PTSD, even with suicidal ideation, loss of hope and helplessness, self-blame, shame,

and resignation, regret, guilt, and resentment, and combinations of the above.

Parents’ psychological distress manifested as frustration, disappointment, sadness,

loneliness, anger, being overwhelmed, embarrassment, and as perception of never-ending

challenges and lacking confidence and stability. Distress was related to past parenthood

experiences, their current situation, and future worries. DE, a father of a 23-year-old son with

ASD, reported:

In fact, looking back at it, we both [self and spouse] feel that we have suffered all of the sadnesses and heartbreaks of raising children, with none of the joys. None of the good stuff. When I go home from work, maybe I’ll go past the athletic field and I’ll see little kids playing soccer or something. My first reaction is, “I wish I had a kid doing that.” And then my second reaction is, “No, I don’t wish I had a kid doing that. I wish that we had been able to be part of that when our kids were that age.” So, to put it in a nutshell, we feel we missed all the good stuff.

All participants expressed distress related to concerns about the future. Concerns about the

immediate future related to their child’s dating, driving, career development, financial security,

relationships, isolation, mental health, transition into college and growing independence. Concerns

related to later life were adjustment to an “empty nest,” the unknowns, and what will happen with

their child when they are gone. TC, a mother of a 21-year-old son with ASD, reported the distress

and fears she experienced regarding her son’s ability to function and maintaining his mental health:

In high school he became completely non-functional, he literally didn’t wanna do anything, wasn’t doing anything. As far as I could see, completely destroying his future because as a ninth grade he was a F student. All I kept thinking, what are we gonna do with this kid, he will not even get out of bed, he stopped taking care of his hygiene… we started looking in to special need trust for him because we were like how is he ever gonna even get a part-time job? He won’t get out of bed, he won’t brush his teeth, he won’t comb his hair. I


couldn’t even imagine him ever doing anything, I was looking at a kid who was gonna be in his bed for the rest of his life on his computers…this was right around the time of the Sandy Hook shooting that was all happening. This is Adam Lanza, like he is Adam Lanza, this is gonna be our future, he’s gonna be shooting up a high school someday. It was really very very traumatic and scary. I just couldn’t even imagine how bad things were gonna continue to get.

Parents shared that they experienced constant worry and anxiety, about their children with ASD

lacking good enough socialization skills, sufficient self-awareness and awareness of others, as well

as good social skills to get a job, to have friends, to date, marry, and have family of their own. PS

a mother of two sons with ASD and one neurotypical son, shared her worries and pain related to

her 21-year-old son with ASD:

And basically, he [son with ASD] continues to go through that rejection. …He works at home, he’s got about a 30 hour a week job, who knows how long that will last. Hopefully it will last forever, but he constantly gets rejected from jobs... [and] Women? He did date someone for five years in there. They broke up. She had a lot of issues. He had a lot of issues. But, I think hers were more than is. But now, it’s like he’s a serial dater. And it’s very sad to hear your son say to you, “I will never have children because I don’t want my child to be autistic.” So, you just wonder. What is the life going to be about? I just get so scared that I see them just living alone, and nothing.

GP, a mother of a 24-years-old son, recalls her fears related to the meaning of the ASD diagnosis

for her son’s future in terms of getting a family of his own:

I remember early on crying because I was reading Temple Grandin’s book. This was very early on. … He had just been diagnosed. He’s like about 4. I’m reading Temple Grandin and she advises that they be celibate, and I have a 4-year old. I’m kind of crying over that.

Parents’ experience consisted of many unknowns, which impacted the level of anxiety that they

had, which in turn impacted their ability to see the bigger picture, beyond the deficits in their

child’s development and their atypical parenthood experiences. SB, a mother of a 23-year-old son

with ASD, shared, “But I never really enjoyed any of the stages of his development, because I was

always worried about whether he would get to the next level or get to the next step.”


Parents reported feeling anger related to their lack of confidence in their ability to help

their child or develop needed skills to support them. MO, a mother of a 22-year-old daughter with

ASD, shared:

I did things, but every time I couldn’t get what I wanted from her, I felt very upset. Sometimes I’d get angry. And I guess that feeling, in some way I threw it to her in some way, but I also – it was dismiss[ing]) myself - my confidence. I really lost my confidence because wherever I try, I couldn’t get what I wanted. The first 18 years was like that. Because I couldn’t get what I wanted from her, I turned those feelings into anger to her, but at the same time, it diminished my confidence more and more and more.

Many of the parents reported sadness due to loneliness and isolation. GP, a stay-at-home mother

to a 24-year-old son living in Massachusetts and previously in the advertising and finance field,

shared:

I felt like you go through that door, you become a parent, it’s a parent door and you have all these people that you meet that are comrades at the playground and things like that. Everybody has the same story. Then you go through that other door that a lot of parents don’t go through. It’s a special needs door and it feels very lonely. And then it’s very different. Not every parent you meet in the waiting rooms for that are going to be like you, particularly on the spectrum because there are several parents that are on the spectrum themselves and if you’re not, you kind of realize that after talking to them for a while. So, it becomes fairly difficult. It’s definitely lonely. A lot of parents meet friends through their kids. Their kids play soccer together. The kids have play dates together and then they become friendly with each other. Once your kid is not on the same trajectory as everybody else in town, you don’t see the other parents in town.

All parents in the study reported some signs of depression or exacerbation of prior symptoms of

depression (in three parents), and even PTSD with suicidal ideation. LT, a mother of a 25-year-

old son with ASD, who lives in the Northeast, described:

I have to laugh because it was so bad. I had a nervous breakdown. I had the postpartum depression and that was kind of a lingering thing, and then when he started having really bad behavioral issues it was very triggering for me. He would wail on me. He would hit me and throw things at me and scream at me. I had PTSD and I started feeling like I wanted to kill myself.

BK, a mother of a 20-year-old son with ASD, also shared traumatic parental experiences:

Oh, well that was just because he became severely depressed at the university. I’m talking


about like relationship between ... the [children and the] parents and the trauma that they experience …because their children are either violent, uncontrollable, disrespectful or there’s like real, severe depression… These are … like issues where the parents then become traumatized because they’re dealing with like insurmountable issues.

Parents shared their helplessness because of inability to do things as effectively as they would have

liked. EW, a father of a 19-year-old son with ASD, described his experience:

Something that I’ll say that is true still to this day, dealing with Autism is basically scrambling around in the dark. It’s been from the beginning, and it is to this very day. You’re scrambling around, trying to find your way in what is essentially darkness, and it hasn’t changed to this day.

Parents shared that they blamed themselves for their child’s challenges and struggles. They

experienced self-blame for not doing the “right” things in the beginning or for their child’s lack of

independence as they got older. WB, a father of a 21-year-old daughter with ASD, shared:

I think I became very - really overprotective of her. And that’s something that we’re still dealing with now in that we’re trying to scale back and have her be less dependent on us. Our number one priority right now is to get her independent life skills, which I think we could have done better. I even take the blame. I probably went too far in terms of doing things for her and protecting her.

Parents reportedly experienced shame related to being blamed by their child or family members,

for making certain parenting decisions, and this sometimes caused withdrawal and resignation.

TC, a mother of a 21-year-old son with ASD, a physician, shared:

...He [the son with ASD] also blamed me for everything. I tried to fight it for a while, but eventually I was just like, if you really hate me, that’s fine. You hate me…it’s over, I can withdraw from this relationship.

Parents also experienced loss of hope for a good outcome for their child, which also led to

resignation. The same mother, TC, reported:

It just seemed that there was no hope, that nothing was gonna happen, that nothing was helping him and we just kept trying things and I was willing to try anything at that point, if I believed it would really work I would have sent him [to a wilderness program].


Parents shared they felt regret that they could have done things differently had there been more

information. Two parents reported regret for their anxiety and worry, and four parents reported

regret that they did not enjoy the child’s life stages or celebrate their child’s successes more when

they were happening. The 12 parents with more than one child described guilt and regret for not

paying enough attention to their other children. SB, mother of a 22-year-old son with ASD from

Michigan, shared:

And my main regret – in fact, I met a mom who, they just had their daughter who’s five diagnosed on the spectrum, and the one thing I really wanted to say to her was try to enjoy the stages of your daughter’s life. I mean [my child] was really – he was a joy. He was not a behavior problem. He was not any trouble – of course there were all the challenges, but behaviorally, he wasn’t a challenge… And so that’s one of the things I really, as a parent, kind of lost sight of - just enjoying the moment with him. Even though I have tons of memories and great times with him, it’s just that there was always that burden that, what’s he going to be as an adult? What’s he going to accomplish? And that kind of thing.

GB, a mother of two daughters, one of whom (18-year-old) has ASD, reflected on her regrets:

I think it as probably hard on my older daughter, and I didn’t realize it at the time, but I think I probably was hyper-focused on [daughter with ASD] and it was hard for [typical sibling]. I did things with [typical daughter], but I think I was just probably pretty anxious about [daughter with ASD]. That was probably hard for [typical daughter], too.

Three parents acknowledged resentment as one of the negative effects of parenthood experience.

Parents shared their resentment of the caregiver’s role, specifically feeling that they were the only

ones doing everything for the child, distinct from the role their spouse had. SB, a mother of 22-

year-old son with ASD, shared the resentment she felt about what she was missing out on:

And part of me was a little bit resentful that I didn’t have the outside connections that my husband did. He could leave and forget the issues and go to work in the real world. So, I think part of me was a little resentful about that, but I wouldn’t have had it any other way.

Impact on Family Relationships. Parents of children with ASD reported negative effects

on marital, parent-child, and sibling relationships in their family.


Marital Relationships. Parents experienced rejection, alienation and abandonment by their

spouse at the time when they were processing the diagnosis and coping with the reality of the

situation. They also were lacking support from their spouse in day to day challenges, reported

spouses exhibiting critical and negative behavior, minimization of challenges, and blaming. Some

parents reported that their marriage was impacted negatively because of differing perspectives of

the child’s challenges and on decision on which issues to focus, as well as other issues related to

child care. For some, one parent’s prioritization of their child with ASD over their spouse and

other children contributed to stress in the marriage. GB, a mother of an 18-year-old daughter with

ASD, who is working in the healthcare field, reported:

[Husband] didn’t really handle – it took [my husband] a long time to accept the autism diagnosis. I remember one day he was alone with her for a while, and I came home and he was exasperated. He said, “Tell me more about this autism.” He was always a few steps behind. I was the one in charge of her care. [My husband] was in charge of working and keeping the financial support going, but he really couldn’t join in as a part of supporting [child with ASD]. He went to one IEP [Individualized Education Plan] meeting and he came out saying, “I had no idea what language you were speaking with them, but it’s a language you know and I don’t know.” He was pretty distanced from it, and he – I think the stress of it – he became more and more violent. We eventually separated and divorced, because he just couldn’t handle the whole situation of our family. It had become me focused on [child with ASD], supporting [neurotypical sibling] as much as we could, [husband] and I struggling. We went to marriage counseling for three years.

Five parents reported that having a child with ASD took a toll on the family, specifically

contributing to division of the family and even divorce (for four out of these five parents). Other

parents shared that the family dynamic became strained after the birth of their child with ASD, but

they were able to collaboratively make it work. AF, a director of a school for children with ASD

and mother of a 24-year-old son, attributed the family division to her husband and daughter’s lack

of desire to understand her son:

It is sad. It is sad…but it is sadder for me [than] for my son. It hurts me that my daughter bullied him in our house and when I would intervene, her father would defend her and again that added to our division in our house. He needed help, because they fully did not


understand him and chose not to. They bullied me. She would tattle, “Daddy, Mommy’s helping [child with ASD] on the computer, she is doing HW for him,” because he couldn’t write or speak at the same time so I would be his secretary. Their lack of wanting to want to understand him led to a larger and larger gap and that’s where it is. Parent-Child Relationships. Parents reported negative effects on their relationship with the

child with ASD and with their other children. While parents shared a close bond with their child

as their child’s caretakers, parent’s initial frustrations due to lack of expected connection with the

child with ASD, their own anger and inability to accept their child as they are and anxiety about

the child’s outcomes impacted negatively on parent-child relationships. MO, a mother of a 22-

year-old daughter with ASD, remembered:

I always believed that she, in some way, could get better because the few times that I could really observe her, I realized that she’s smart and that she can think, even [though] she cannot talk. But she in so many times has demonstrated to me that she can think. But because I wanted things the way I wanted, not the way she can do it, it’s like not accepting her. And she knew it; she could feel it.

Parents shared that their relationships with their other children who were typical or with less severe

symptoms of ASD, were also negatively impacted. All parents who had more than one child,

reported that because they focused their attention on the child with ASD, and if there were two

children with ASD in the family, they focused on the one with more severe symptoms, their other

children did not get proper attention. MO, a mother of a 22-year-old daughter with ASD, shared:

But my [other] children, I guess they understood how difficult it was to take care of [child with ASD] because she was the child who was running all the time, all day. So, [child with ASD] wanted to be all the time outside the house when we were at home, and so I was just taking care of her. And my youngest and my oldest were with other children of the same age. Siblings Relationships. All 12 parents who had more than one child shared that having a

sibling with ASD posed challenges for typical children, and had an impact on them and their

relationship with their sibling with ASD. Some parents described the experience for the sibling as

extremely difficult, while other parents shared the ups and downs in the experience. Two parents


shared that their child rejected their sibling with ASD because of their own lacking self-confidence

and embarrassment, and three parents shared that their other child had resentment towards their

sibling with ASD. GP, a mother of a 24-year-old son with ASD and a neurotypical son, reported

on the effect on her younger son and the sibling relationship:

I think initially because [neurotypical son] was younger, he idolized his older brother, as most younger brothers do, and then later on, it became obvious that [son with ASD] was a liability for him, kids made fun of him. It’s a very small school system. So, [son with ASD] had a lot of issues with that. I think for siblings, they either become very protective, if they themselves are socially strong, they become very protective of their sibling. If they aren’t socially strong with themselves…, and he wasn’t, he also had a lot of social issues, then it took a while. There was one time where he and his cousin kind of ganged up on [son with ASD] and I had to have a real talk with him about how [son with ASD] gets bullied by lots of people. He should not be bullied by his family.

GB, a mother of two daughters, one of whom (18-year-old) had ASD, shared that the bond between

her children was impacted by her child’s (with ASD) aggression: “[The daughter with ASD]

wasn’t receptive to her sister. She was pretty aggressive to her sister. That was pretty much her

baby years.” The same mother reflected further on her children’s relationship:

Her fourth-grade teacher told me one time that [neurotypical daughter] had never mentioned having a sister. They had read a story about sisters and brothers and everyone in the class had volunteered some information about their sibling, and [neurotypical daughter] didn’t say anything. …I think, out of all of that, what probably was the downside was [neurotypical daughter], maybe not feeling as integrated as she might have been…

TS, a mother of three children, shared the pressure placed on her eldest son (the middle school

neurotypical child):

Yeah, so he’s a big boy and has been big in middle school but he never got in any trouble. I feel like I’m proud of him, but I almost feel like there was added pressure because he knew how much I could not stand that middle school and a lot of the administration and what his sister went through. He had a fine experience because he played a lot of town sports, so he knew kids. I think there’s added pressure on my other children because of our experience. I had a visceral reaction when I’d go into that middle school. I went in and we attended things but [typical son] – there’s no way he wouldn’t have felt that pressure because we talked about things.


PS, a mother of three children, shared the negative impact on her middle child, who is neurotypical,

as he became a caregiver to his siblings:

What he says now is, “Mom, don’t worry. I’ll take care of [son with ASD]. You don’t have to worry. You don’t have to worry. I’ll take care of them.” So, that’s kind of the position he’s put himself in, unfortunately. He is the typical middle child. I did the least for him. I just didn’t have time. I had both boys trying to figure out, you know? And the poor kid. “Can you zip his coat? Can you tie his shoes? Can you –” He’s a younger brother taking care of an older brother. It’s gonna have a major [negative] effect on him. Impact on Social Relationships. More than half of the parents shared that they experienced

negative changes in their social relationships, since the earlier stages of parenting their child with

ASD, as their children began to develop differently or at a different pace than other children their

age. These changes included judgment by friends, loss of adult connection, isolation and

detachment from socializing with friends with typically functioning children, feeling rejected, as

well as from being in their own ASD world. Parents reported a shift when they were not able to

include themselves and their child in the same typical activities as other children and their parents.

GP, a mother of 24-year-old son with ASD, shared the earlier part of her experience of a loss of

connection with other parents:

We thought we had a little genius on our hands, as a lot of Asperger’s parents think in the beginning. So, he was remarkable, but we noticed that he didn’t always want to do what the other kids were doing. Like at the playground, he’d want to go through rocks in the water when everybody else was sitting at the swings. I kept saying, “Don’t you want to…?” And he’d say, “No.” And I’d be like, I have to sit here and watch him throw rocks in the water when all the other moms are chatting because their kids are on the swings.

DE, a father of two children with ASD and self-described as having Asperger’s traits, shared the

feeling of being isolated from the rest of the parents’ community:

We were not able to have playgroups and playdates the way most parents can …Not being able to connect with other parents because you weren’t able to include your children in similar, typical sort of activities. It was extremely isolating.


Three parents reported purposely isolating themselves from other parents and friends because of

their own child’s needs and the pain of comparing their child to others. PS, an architect and

mother of three children, two on the ASD spectrum, shared, “I found myself just kind of

removing myself from other moms. I just didn’t want to hear how great their kid was doing. Too

painful. You know?”

Posttraumatic Growth and Other Benefits of Parenting a Child with ASD

The second major finding of the study is that while struggling with the stressors and

challenges of parenting children with ASD, parents reported simultaneously occurring benefits

and growth. These benefits included finding new possibilities, appreciation of life, personal

growth and strength, relating to others, and spiritual change.

New Possibilities

Parents reported that one of the benefits was finding new possibilities in life, which

included the new philosophy of life, new careers, new ways to take action, new possibilities to

understand their children, as well as new possibilities for their children. Because of their

experiences of rearing children with ASD, parents’ philosophy of life, i.e. the way of seeing the

world or themselves, shifted in terms of what is most important. This increased parents’ self-

awareness and ability to accept things as they are. E.g., parents shared that they saw new

possibilities for their future, when the initial expectations of how things “should be” were set aside,

and they were able to find new life paths for themselves. AF, mother of a 24-year-old son with

ASD, shared:

I am 54. I got my real time break at 53 because after I had gotten sick… my immunologist said, “You can’t do it anymore. You’re out.” So, I started my own agency of life and job coaching, case management. I did not wanna work with anyone but parents. So I did case management and I hired life and job coaches through people I met; it evolved because [child with ASD] was making progress and therapists kept saying - can I have a mom call you and I want you to speak to her and tell her who you use and what you did…and it kept


happening…and someone said, so and so gave me your name… it was so often that somebody said to me, “You can make it a business.” And I said, “I can make money off of this?!” I don’t want anyone to go through what I went through; I wanna be the Zagat of Autism. That’s what I wanted to be. I had to find everything. No one should have to do that. I wanna be the 411.

LT, a mother of 25-year-old son with ASD, also acknowledged her pragmatic creativity and

assertiveness when she utilized her experience of dealing with ASD related issues in making a new

career that she enjoys in the area of marketing and social executive coaching:

So, there were huge adjustments as I educated myself. And then once I educated myself, it wasn’t a big leap to realize that it didn’t take that long until I knew more about this world than I did about, in a certain way, the advertising world. Because while on the surface, it seems very different, my role in advertising was a lot of social coaching, and frankly, executive function coaching, … I will do the basic, ‘Let’s lay out your syllabi and take a look at what’s coming up if you don’t have an executive function’...

Parents described different new ways of taking action. Some of the parents reported becoming

experts on ASD and using the information that they learned both to foster deeper connections with

their child by leveraging their strengths and seeing the positive aspects of their characteristics, and

how to navigate the ASD and disability services system, search for answers and meaning, and

investigate alternatives to supporting their child’s needs. This included changing treatment

methods and school settings and finding new approaches to working with their child. One mother

shared that she became her child’s socialization coach, and all parents discussed their ways of

advocating for their child and doing everything for the child to keep things workable. Three parents

talked about making a geographical move to obtain better care for their child, and three parents

took steps to future preparedness in case of parent’s death. Another mother, GP, who cares for a

24-year-old son with ASD, reported not relying on professionals to implement the IEP effectively,

and taking an active role in this process, “The thing that I did that was great was I really

supplemented what the school could not provide. I supplemented on my own.” MO, a mother of a

22-year-old daughter with ASD from Japan, reported taking action by way of managing her child’s


interventions and doing self-growth work and self-reflection to be open to new possibilities for

helping her child:

When he [the teacher/therapist] left the first time, we just were so in peace because we understand why we were fearing things, why we were worrying about things, why we wanted things. So, it was not about [child]. I mean, it was not about her behaviors; it was more about how we were looking those behaviors, and why we were thinking those behaviors were problems. So, what he did was really make us understand what was happen with our daughter and help us to find the answers by ourselves. So, of course, he in some way gave us many advice, but at the end, we were the ones who decided what to do with the advice.

Parents shared finding new possibilities to understand their children through better understanding

the ASD diagnosis, which contributed to a more connected experience with their children and

allowed parents to care better for their needs. GB, a mother of an 18-year-old daughter with ASD,

shared her journey to better understanding the ASD diagnosis by becoming more observant of

what worked for her daughter and what did not:

If [child] had an obsession, I was going to work with it. If she was obsessed with fire hydrants, then we were going to color and cut out and put glitter on fire hydrants… because she had a real problem with using her hands and scissors and glue and mess. So, if she was interested in fire hydrants, by golly, we were going to focus on fire hydrants. I think it took becoming aware. It was like realizing that when I walked her down a quiet street, she was okay in the stroller, and if I went down a noisy street, she had an outbreak… and just picking up on these things, like paying attention to her. If I lifted the bathmat and she could hear it, it would send her into a fit. Dealing with thunder …, and she was really fixated with tornadoes.

GP, a mother of a 24-years-old son with ASD, shared about better understanding of the

socialization issues in children with ASD and their use of social media, to see the new possibilities

for social connections for her child:

A couple of nice words and he’s like all over the kids. He learned quickly that when he glommed on to somebody, after a while, they would not want anything to do with him. As he got older, he realized he needed to temper that, then when he discovered social media, he found that that was an easy way of really maintaining social contact without some of the difficulties. So, he has tons and tons of social media friends. … In a lot of ways, they’re not gonna have the connections that we have, but if you can teach them, that’s okay…it’s ok.


Parents shared that because of their working through struggles, they have learned to see more

possibilities for their children with ASD rather than sticking to negative assumptions and

predictions. GP, a mother of a 24-years-old son with ASD, shared:

God give me the strength to accept the things that I can’t change, and to accept the things I can and to have the wisdom to know the difference. So I have both those sides. It’s the wisdom to know the difference that makes it very difficult. My son said to me, “Gee, should I apply to BU?” I would have said, “No, I think that would be too hard for you.” That would’ve been my judgment. He said he was going to apply to BU and in my head, I said, “He’s never going to make it. But, I’m gonna let him try.” So, he applied and he got in. And then I was like, “Oh, my god. It’s not the kind of school I thought he should go to.”

Appreciation of Life

Parents reported the benefits of their parenthood experience in the area of appreciation of

life, which included a new perspective on their child, self, and life, finding benefit and positive

meaning of the disability, and obtaining wisdom, gratitude and hope.

New Perspective on Child, Self, and Life. Parents reported that they experienced an

expanded, broadened view of things and people, had more acceptance of how things are, changed

expectations, perspective about ASD in general and perception of what “the problem” and/or

success is, and shifted from blame to self-responsibility. GB, a mother of an 18-year-old daughter

with ASD, remarked on her changed perception of her daughter through greater acceptance of who

her child is: “To me, a big part of it was just accepting that [her child’s with ASD life experience]

and trying to comfort her through it. I think a big part was acceptance. Just, this is who she is.”

Parents also shared a newfound appreciation of their child as a source of positive changes in family

members. MC, a mother of a 26-year-old son with ASD, from Massachusetts, shared, “He

reinvented me. [People] would probably describe me as smart, hard-edged, analytical, maybe

judgmental. I can still be all of that, but I think kind and open as a result of my [child with ASD].”

Parents developed a better understanding of their “self” in order to better understand their


child. MO, a mother of an 18 year-old-daughter, from Japan, shared her new perspective on child,

life and self:

I have heard the word “acceptance” all my life because other people tell you, “You have to accept your child. You have to accept your child,” but I guess most of the parents don’t know what the acceptance means. During those 18 years, I always believed that I accept my child. But now that I thinking, I was thinking that I didn’t accept her because I wanted her different. And I said, “I love her,” but at the time, it was not her. I was loving an ideal, something that was not her. So, when I started the Son-Rise [Program][The Son-Rise Program teaches a specific and comprehensive system of autism treatment and education designed to help families and caregivers enable their children to dramatically improve in all areas of learning, development, communication and skill acquisition.] - it’s not like I fully understand what acceptance mean, but I guess it was the beginning of understanding what acceptance in some way means. I won’t say that I’m 100 percent [understanding what acceptance means]. I mean, even I’m working with this program for four years, I’m still working on myself, in order to really, fully accept her. But I guess, acceptance means not judge of what she’s doing because the more I’m studying or working with the Son-Rise, I really now understand the problems that actually she’s having – the sensory problems and all these problems. So, understanding her, I can in some way maybe put myself in other position and try to understand more what maybe could she experience, and since that point of view, I can just not expect her to do things the way I want to. So, I guess acceptance now for me means just let it go things.

LT, a mother of a 21-year-old son with ASD, shared her appreciation of life in the ASD world,

and what she made of it:

Well, I think I'm a much better parent than I would have been. I'm not perfect, and I always feel anxious about that. But I think I had to parent at a level – one of my friends told me the other day, ‘My kids would like to join your family.’ And I said, ‘Why?’ And they said, ‘Because you explain,’ because once I understood like the hidden curriculum – do you know that Brenda Smith Myles concept? So, once I understood the hidden curriculum, and once I understood all this social stuff, it became clear to me that while we only apply this largely to people on the spectrum, everyone will benefit from knowing it. And so I explain these things in the car with the kids and their friends all the time. So, she's like, ‘My kids would like to join your family because you actually explain the world to them in a way that other adults don’t explain the world to them, and they love it. And you're funny when you do it.’ And it was such a compliment. I was like, ‘That’s such a compliment.’ Finding Benefit and Positive Meaning of the Disability. Some parents found the benefit

though viewing their child’s behavior and characteristics as positive, gaining a new meaning to


the child’s limitations and disability. TS, a mother of an 18-year-old daughter with ASD, shared

appreciation of her daughter’s pragmatic nature as a strength:

It [the relationship with her child with ASD] is strong because she’s really easy to parent, because my seventh grader with puberty, the minute I say the word “period,” she goes running out of the room, so I can only talk to her about getting her period – I lock her in the car. She’s like, “Don’t do it!” But with [child with ASD] was just pragmatic. I’d have a book. We’d read a book. We’d talk about the book. “This is how you take care of your body, now that you’re 18.” Things are really there’s a lot that are very, very simple with her. Obtaining Wisdom, Gratitude and Hope. Some parents reported that they have gained

from their parenthood experience “wisdom” about what is most important. DW, a father of a son

with ASD and self-described as having Asperger’s traits himself, shared, “We have acquired

wisdom. We have acquired tolerance. And we have learned a whole lot about the human condition.

So, we didn’t get happiness. We got wisdom and insight. To me, it’s valuable in itself.” Other

parents talked about the wisdom of seeking support in usual and unusual places. GP, a mother of

a 24-years-old son with ASD, shared being creative and proactive in obtaining needed support

rather than taking ‘no’ for an answer:

[Son with ASD] …was not accepted [to camp]. He had an interview. He wasn’t accepted. I talked to the head of the group…. I said to the director would you consider doing a pilot training program for a school district and they said, “Yeah, they said yeah, they would consider that.” I went to the superintendent of our school system and I proposed that we start a program here for kids on the spectrum with a curriculum and train the – what I wanted to do was train the aids who would be working with the kids in the fall. They would come and I said you can open it up – our school system is really small. The specialty teachers would work under this curriculum. By the time – then the aids would work with the kids too so that by the time the aids get the kids in the fall, they’ve had all summer to work with these kids to know them and the kids know them. I thought it was a win-win idea.

Other parents shared that the joys of being a parent of a child with ASD is providing hope for the

possibility of this bitter-sweet experience to be more sweet than bitter. LT, a mother of a 21-year-

old son with ASD, provided a blog post about this:


Recently I dropped my now 19-year-old son off at college, and I felt so much joy in being able to experience this rite-of-passage, especially because many parents of kids on the autism spectrum do not get to have this experience. In the lead up, I described my feelings to people as “yes, it’s bittersweet... but I think my percent sweet is higher and my percent bitter is lower than many neurotypical parents feel.” I was so excited to help our son choose courses (still a frustrating experience after all these years), and I was positively gleeful when we landed in Minnesota and headed to Bed Bath and Beyond, “just like everyone else” (which I know is not really everyone else, but is just the financially, academically, transition/life skills capable, and in many other ways privileged few). But of course, this is what I had imagined and dreamed of all those 19 years ago.

Parents shared their gratitude for their parenting experience and their children and hopes related

to their child’s future. LT, a social life coach and mother of two children on the spectrum, shared

how grateful she is for her children and all the experiences she had with them:

I wanted to do something more psychological, and life didn’t give it to me in the way that I thought, but it did give me that experience. I think of it as a much more intensive parenting experience, and I would say that I know my kids better than any of my friends know their kids. I’m closer to them. They are more demonstrative [in showing love, affection, appreciation] than their kids now…their kids were what I wanted and I just didn’t get that, but now their kids are all shut off and independent and running their own lives. My kids tell me a lot of things, especially our daughter. It has just been a very different life experience.

Personal Growth and Strength

Parents of children with ASD reported increased personal strength that manifested through

changes in their character and their overall way of being, as they noted that they became more

flexible and able not to be reactive, as well as self-aware and humble, understanding, accepting,

forgiving, less selfish and more empathic, while being outgoing and assertive.

Parents also reported discovery of their own personal strengths as increased self-reliance

and recognition of possession of internal strength. This allowed them to have a positive attitude

towards life as a whole, not to feel judged or take things personally (e.g., other people’s opinions

and/or expectations about their child) and allow self-acknowledgement about doing a good job.

Others reported that they recognized a sense of perseverance, persistence, determination and a


“never giving up” attitude in handling challenges. Parents identified that they were good problem-

solvers, self-aware and were able to be self-directed in rearing their children and caring for their

needs.

Parents shared a sense of empowerment, courage, self-confidence, patience, and

willingness to ask for help. They discovered that they had skills that they did not know they had,

such as being structured, strong in advocacy, creative, good leaders, strategic and loyal. GP, a

mother of a 24-year-old son with ASD, acknowledged her efforts and strengths:

I don’t do a lot for me. But I think part of me gets a real kick out of doing these sorts of things well, which might be the reason why I’m searching to give people advice about things now. I do think I give myself a lot of kudos for doing certain things as well I have done.

CB, a father of a 27-year-old son with ASD, shared his personal strength as seen through his

determination and attitude, “I think, generally had an attitude of being determined to make a

change … It may be partly the attitude of never giving up that has made a major difference.”

Relating to Others

Parents reported improved relationships with others and finding themselves helping other

parents and other people. Parents shared their experience of an overall deeper connection with

others, learning how to love better and what it means to love another person, increased compassion

for other people, increased understanding of another’s wants, needs and desires, increased

tolerance and increased attention and awareness of others. MO, a mother of a 22-year-old daughter,

living in Japan, shared, “The connection with the people who are now around us is more deep…

it’s something that I could never (have) had [before].”

Twelve parents reported a desire to help, advise and empower other parents. AF, a mother

of a 24-year-old son with ASD, became the director of a special needs school, to contribute to the

ASD community. LT, a mother of a 21-year-old son and 19-year-old daughter, both on the ASD


spectrum, became a socialization coach for the same reason. Two of the parents reported

specifically volunteering to support people with disabilities, while two others supported their

spouses (with ASD traits) in becoming more socially aware and successful. PS, a divorced mother

of three children, and business owner, shared, “I volunteer a lot, I try to do things for other people.

I do a lot of work for people with disabilities, which make me feel fantastic… that gives me so

much joy.” DE, a father of a 23-year-old son and on the spectrum himself, shared his desire to help

others in both neurotypical and neuroatypical worlds:

Certainly learned a lot, as I mentioned earlier. We also learned a lot about Asperger’s and I feel that maybe, at some point, there will be a chance for me to kind of be an ambassador. Maybe some volunteer slot or something to help explain Asperger’s and Aspies to the neuro-typicals and vice versa. I’m pretty verbal and pretty linear in a way that Aspies can understand. So I might have a chance of being able to explain the bewildering world of neuro-typicals to an Aspie kid. Maybe.

Spiritual Change

Half of the participants described developing a deepened sense of spirituality, belief in their

child, an increased sense of importance of spiritual matters, faith and belief in God as supportive,

fitting what has happened in life into God’s/ life’s will and a belief that the parent was chosen to

experience this journey. AF, a mother of 24-year-old son with ASD, shared the role of spirituality

in supporting her through dealing with her child’s ASD and her husband’s accident at the same

time:

Two months after my daughter’s bat-mitzvah is when the car accident happens to my husband. So, I was not anything. I wasn’t religious. I was not looking for religion. I was looking for spirituality, definitely. For both. This was bigger than me. You don’t take two of my people. So, it made me spiritual. It gave understanding. It took away feeling like a victim. It gave me the comfort – I use the term loosely – of being “chosen” by…you know... just like people rely on religion for comfort.

GP, a mother of an 18-year-old daughter with ASD, shared her thoughts about being “chosen”: I

think somehow – and I’m not a religious person – God decided that I am capable of being a mom


to someone who has tons of issues.”

WB, a father of a 21-year-old son, shared that spirituality was a core of his life and that he

was serving people as self-imposed responsibility:

I think maybe spirituality is a big piece of this because I believe that God calls us to care for people. And there was never any guarantee that life was going to be easy and that challenges make us stronger and help us grow. And I guess it comes down to people that can embrace being a servant and doing what needs to be done and who can’t. I look around. There are certainly people in worse situations that I guess I could handle it. But you see people that have children who are profoundly disabled, in a wheelchair, can’t walk, can’t eat or care for themselves or require constant physical care. I’m not sure that I would have the stamina to do that kind of thing. The mental challenges is enough. But I don’t know. I guess I wouldn’t know until you’re in that circumstance. But I think the spirituality is a big piece of it. You’re called to take up your cross. You’re called to meet your responsibilities.

TS, a mother of an 18-year-old daughter with ASD, shared that spirituality and believing herself

gave her strength, “God, you gave me this child. I’m going to make sure this child has the best

possibilities that are open to her. I’m going to protect her.”

Being a Contribution to Other Parents with Children with ASD

Parents shared their desires about and ideas for supporting other parents and families with

children diagnosed with ASD. GP, mother of a son with ASD shared:

It feels like this is a big next stage, school is finally over. I had been thinking retrospectively there is a lot of stuff that I would like to tell parents. I’ve actually contacted [son’s] old school to say if the parents at the school are interested, I would be interested in talking to them.

One of the ideas was for hospitals and/or agencies to organize a panel of seasoned parents with

children on the ASD spectrum of varying ages (toddler to adult) available to parents of newly

diagnosed children. Parents insisted that because parents of children with ASD have the insider

knowledge about various ways ASD presents itself to the outside world, which no one else has,

they should be the ones advising new parents. E.g., BK, a mother of a 20-year-old son with ASD


shared the distinction between ASD related behavioral issue and the aggressive “defense” that

children with ASD may employ:

I mean, he was a wrestler, but, you know, he couldn’t – he couldn’t wrestle worth anything [laughs]. He was just in it for the socialization. He used to scream at people to try and scare them, but in the end, they took him down. So – so anyway, the other one, he’s the real wrestler. But, anyway, that’s another story. But, the bottom line is, is that that’s my theory. You understand what I’m saying to you, what my theory is? If you’re studying the difference between trauma and non-trauma, it would be interesting for you to compare like what are the behavioral issues. You should collect what are the behavioral issues of the children.

Another idea was to keep various supports in place for as long as possible, as well as to have multi-

disciplinary teams of professionals who understand the family’s needs, including current and long-

term planning (financial, housing, services). GP, a mother of a 24-year-old son with ASD and an

advocate for ASD community, shared about the importance of planning ahead when children are

still young:

Typically, what happens is parents go from year to year since initially, they believe that if they just get enough, the kid will improve. The exhaustion of all the different stuff that they have to go through and they have to get through, it makes it very hard to think about the future… what happens when their parents aren’t around anymore?... It’s basically financial future planning for their kids. What happens is people don’t think about that until their kids become adults. Then it’s very hard to plan financially for their kids. You need to do it when you’re young, when the kids are young and you don’t know.

Appreciation of the Study as a Benefit

Parents shared that they found participation in the study as a benefit for themselves, as it

made them stop and look retrospectively, and find out that there were more positive than negative

experiences of their parenthood journey, despite that it is long and difficult. LT, a mother of two

children on ASD spectrum, shared that parents will get connected with their children one day and

that their love to the child will be reciprocated; they just have to wait a bit longer:

I thought maybe I would never know her [daughter] in the way that I had imagined knowing my kids, but it turns out that I had to wait a lot longer. I had to wait to hear her say, “Mama,”


and I had to wait to hear her say, “I love you.” And I had to wait for everything longer, but that it was all there.

Parents shared that the study became a way to become more self-aware and, in a way, it was

therapeutic. Some parents shared lacking confidence in their own influence on others’ lives,

questioning whether their feedback would help, while others viewed the study as a way to pass on

wisdom and advice for other parents and caregivers, and reported eagerness to further research

through their participation. WB, a father of a 21-year-old daughter with ASD, shared that one of

the reasons he got involved in the study was to share with other people in the ASD community,

“Part of the other reason why I certainly agreed to do this study is I’d like to help other people. I

wish I had gotten some of the advice that I can now give other people.”

Coping of Parents Rearing Children with ASD, Factors that Facilitate Coping, and ASD

Family Unit

The third major finding of the study includes coping strategies that parents of children with

ASD utilized to deal with the multilayered compound stresses of parenthood, factors that

facilitated parents’ coping, and the ASD Family Unit.

Coping Strategies

Coping entails one’s intentional cognitive and behavioral efforts to mitigate the effects of

the stressors. Parents reported coping strategies that they perceived as effective and ineffective.

Effective Coping Strategies. Parents identified the coping strategies that helped them

address and manage the stress as effective. These strategies included biology focused coping,

cognitive positive reframing, and effective problem focused coping.

Biology Focused Coping. Four parents reported that they used mindfulness practices,

meditation and physical activity to alleviate their stress and feel balanced. GB, a mother of an 18


year old daughter with ASD shared:

At some point in the midst of all this I did Duke University Medical Center’s Integrative Mindfulness class and I began meditating, because I don’t know where I would have been without that. I also developed with my therapist a safe place that I could go to – a visualized safe place – and I would go there for just like a couple seconds when the girls were really on me both and I was the single parent. I’m sure I’m tougher after all this.

TS, a mother of an 18-year-old daughter with ASD, shared, “I go on a walk every day with my

dog. I don’t use earbuds. I usually pray during that time. It’s reflective meditation. For me, it was

really a source of strength…”

MC, a mother of a 26-year-old son with ASD, shared about using biology-focused coping

strategies of co-regulation with people she works with, that she previously used to help her

understand and work with her son with ASD when he was younger:

I go to the mall, and I see somebody flipping out. I don’t assume they’re a bad parent. …I assume, oh, there's something up with them. … I try to harmonize with them like I did with [son with ASD]. Like, where’s their energy level? I don’t know how to explain this. It’s just kind of like where are they coming from? Let’s get there. It’s not an intellectual exercise. It’s a biological exercise, and there have been people sometimes who have been a little hostile here. You can deflect it. …You help them co-regulate. Cognitive Positive Reframing. Parents shared using cognitive positive reframing of their

child’s behaviors, which improved their understanding of the child with ASD, as well as their

relationship and connection with the child, and lessened their stress. MC, mother of a 26-year-old

son with ASD, positively reframed her child’s behaviors:

I don’t know how many times he cut his hair with his own little Crayola Scissors. I was forever finding his binky in the broiler. You’d turn it on, and like there’d be all this rubber smoke. I’m like, dear God. Countless Legos in the VCR, just creative things or he would just take off sometimes… creative things like trying to figure out what you can put in the VCR and have it still work. I once lost my debit card, so I thought until finally, I realized I didn’t lose it. He must have taken it. And he’s probably three or four. I’m like, all right, think like [son with ASD]. Think like [son with ASD]. Where would you put the debit card? I’m like it’s in my PC. So, I take the flashlight, and I look at the floppy disk drive because we had those back then. And there it was. He was trying to get money. So, I just picked up the PC and dumped it out but very creative kind of stuff.


GB, a mother of an 18-year-old daughter with ASD, also shared that her ability for positive

reframing made her a better, unassuming, observer:

I think it’s helped me be in the observer state more, because I really had to watch her and not assume that because she was on the autism spectrum that she would have the limitations that I might’ve expected for her to have. It helped me be more responsive. Sometimes you expect as a parent, to always have your love reciprocated and maybe you get upset because in the teenage years they don’t do that anymore. I think I was more ready for the teenage years because [daughter with ASD] could be very aloof and not that affectionate. I was just sort of, kind of ready for them to pull back earlier, maybe, because [daughter with ASD] had taught me that, that she wasn’t always going to be a warm, affectionate person that I wanted her to be. Effective Use of Problem Focused Coping. Some of the parents reported the use of

problem focused coping, which was proactively preparing resources for socialization, setting up

therapy resources in place of socialization, pragmatically focus on child’s current issues rather

than probable future concerns, and not having expectations for child’s future outcomes (e.g.,

related to driving, marriage and having children). These problem-focused strategies were helpful

in dealing with parental stress. LT, a mother of two children on the spectrum, shared her focus on

the current concerns:

Since my own kids are 20 and 22 and not gonna be parents right now, I do not follow along with the daily research because we’ve got who we’ve got. These young people’s brains are where they are. There’s only so many hours in the day, so I am not one of those people who is researching a bunch of theoretical stuff that’s not relevant to me in that moment, if I’m honest about it.

Some parents reported the problem-focused coping in the form of making the arrangement for one

parent to stay home to care for the child while the other (higher paid) parent works extra time to

provide for the child's needs, as well as accessing needed resources and private help. TC, a stay-

home-mother of a 21-year-old son with Asperger’s and a physician by education shared:

Luckily, financially we have had the resources. My husband’s a doctor, he’s made a good living. I do go to a support group for parents of adults with Asperger’s and I do feel like sometimes talking to some of these families who are like mortgaging their house for these special schools. When we did put him in [(school)] it was $25,000.00 for a semester but


we were able to pay it, luckily, at least to a certain extent. We haven’t been totally tested but we have some resources to be able to pay for his services and things that he needs. That has definitely been a support.

Other parents talked about effective cognitive coping strategies by utilizing known statistics about

negative effects of parental stressors in families that have children with ASD. For example, parents

shared that their awareness of marital strain and high rate of divorces in families of children with

ASD made them intentionally utilize coping strategies to keep their marriage a priority. GP, a

mother of a 24 year old son with ASD, shared:

What I will say is when we first got the diagnosis, [husband] talked to … somebody on the Autism Society… He had said, “ Look, make sure you and your wife go out…You wouldn’t believe how many people after they get this diagnosis get divorced.” And that’s quite true. So, we did make sure that we would have like – initially, we didn’t go out as much and [husband] said to me, “I make a lot of money and I don’t want to not be able to go out.” We got a sitter to come once a week so we can go out. It was hard because [son with ASD] was like never wanting to say hello to the sitter, was very happy to say, “Bye, Jennifer.” But he got used to it. It was just a lot of getting used to things and stuff. And we worked out systems. When we went on vacation, we’d play with the kids all day and at night, they’d watch TV and get room service and we’d go out. Ineffective Coping Strategies. Parents reported some coping strategies as not effective in

helping them deal with their stress, and this included use of alcohol; avoidance, denial, blame,

and ineffective problem-focused coping.

Use of Alcohol. One parent shared her use of alcohol in dealing with stress, despite her

knowledge of developing an addiction to it. The mother of a 24-year-old son with ASD reported

that “There is a high rate of addiction as a parent. Not that I was addicted to alcohol but it did make

me drink. I did want my glass of wine not just on a Friday or Saturday night, but I wanted it right

after [each] dinner.”

Avoidance, Denial and Blame. Eight parents reported that initially they avoided or denied

the existence of issues, the severity of their child’s challenges, or resisted reaching out for support


and sharing the need for help. PS, a divorced mother of three children, two of whom are on the

ASD spectrum, shared:

So, maybe, you know, I hide it from myself? Or just kind of stuffing it down in there. I don’t know. That’s a big thing with doing therapy, is talk about what that was like, the pain. And being different. … Too painful.

Five parents reported blaming others (organizations, spouse) for their child’s challenges and the

stresses associated with parenting. EW, a full-time caregiver and father of 19-year-old son with

ASD, shared:

I could diagnose that a child has autism today with the experience that I have with autism. I don’t need a goddamn organization to diagnose children with autism, and they’re soliciting donations from everybody and so forth. What do they actually do for people with autism? For parents that don’t have a life and so forth and so on? Nothing. This is the stuff that gets me so angry. Ineffective Use of Problem Focused Coping. While problem focused coping strategies are

viewed often as the better way of coping (Ghane et al., 2016), parents described it as ineffective,

depending on the situation and its outcomes. Some parents shared that initially they tried to “figure

it all out” in a specific time frame, trying to solve the problems to help their child get better,

including wanting to “fix” their child. LT, a mother of a 21 year old child with ASD shared her

thoughts related to dealing with her children’s challenges the same way she deals with making

arrangements for recovery from surgery:

My bosses were retiring in October, and so I thought to myself … “This is perfect. I’m going to get the kids assessed, and I’m gonna sort out this shit of moving our daughter to the special needs preschool because I’m gonna be recovering from surgery, but I’m not gonna be responsible for any work stuff. So, I’m gonna use this surgery recovery time to sort my kids out.” And I still had these visions that you could sort this stuff out.

GP, a mother of a 24-year-old son with ASD, shared her naivety about how long it would take to

get everything figured out: “I was naïve enough at the time to think it’s about a year before he has

to go to kindergarten. We’ve got a year to get him straightened out.”


Factors Facilitating Parents’ Coping

Factors identified as contributing to or facilitating coping in parents of children with ASD

included professional and social support.

Professional Support. Parents identified three kinds of professional support that

contributed to their coping: organizational support, treatment community support, and legal

support.

Organizational Support. Parents reported that some of their coping was supported by

various professional and government organizations, like summer camps for children with ASD

and their families, SSI, and professional teams at schools. These supports provided emotional

relief, a sense of community, tools and respite for parents. GP, a mother of a 24-year-old son

with ASD, shared about services provided at the summer camp for kids on the spectrum:

I found out MGH had a camp used to be called Youth Care. It’s now called Aspire. It was for kids on the spectrum. It was highly organized and they were teaching social skills and all this stuff and I really wanted [son with ASD] to get in. ….They did the camp really well. Before the camp started, they get their counselors together and go through a two-week training program to help those people work with the kids, basically to teach them how to work with the kids…

Another parent, WB, a father of a 21-year-old daughter, shared about services his daughter was

getting from SSI independent living system:

My wife did a great job several years ago getting [child] hooked up with SSI. So, she does receive funds every month that will become even more important if we try to get her to live independently. That was a good safety net for her. We recently started…an ABA counseling service up here. She’s had a couple of counselors there that have been very helpful for her. So, we’re now supplementing that with a life coach... So, both of them teach independent life skills and give [the child with ASD] a perspective outside of us. They take her out into the community and things like that. So, it provides a little bit of respite. Treatment Community Support. Parents reported that the professional treatment

community that worked with their family and child created positive changes, instilled hope and


possibility, promoted parents’ self-growth and knowledge, reassured and helped them feel valued

and ‘gotten.’ MO, mother of a 22-year-old daughter shared:

And what I found different in the Son-Rise Program is that they say because you as a parent love your child, you know that you have the power to do whatever in your hands to help her or him, and how they can develop is limitless. It was the first time that somebody could really tell us or tell me that there is still the possibility that we can help them. Even [though] they cannot talk or be normal, I guess the perspective or the way they see the child was completely different.

Parents reported also that the professional treatment community supported them in post- diagnosis

management of ASD, which included medication, intervention, and diet. At times, medications

prescribed to children with ASD diagnosis to address their unwanted behaviors, aggression, mental

health comorbidities (anxiety, depression, obsessive compulsive disorder) was a positive factor

influencing parents’ coping. Two parents out of eight who talked about medications reported that

medication was useful or a last hope. PS, a mother of a 21-year-old son, reported that the right

medication was helpful and transformative for her child as it impacted her ability to cope better

with her child:

I think he’s a pediatric neurologist in Wellesley who somebody had recommended I go see with [child]. It changed my life when we saw this guy. He didn’t believe – because what happens is, they put your kid on every med known to man. And Ritalin is not going to work on a kid on the spectrum if he doesn’t have ADHD, you know? It makes him go like, horrible. And I mean, I used to take the drugs with him to see, “Okay, you’re taking that. What’s that like?” Don’t even ask, it was not pretty. But we went and saw this guy. He’s probably retired. He had worked with brain injury patients at Mass General, adolescents with brain injury, and specifically started to notice that Amantadine really helped these kids. And it had been around for so long, it just didn’t make them go like this. [son with ASD] started taking it, I got a call from somebody on my street that [son with ASD] has smiled at them. So, it was about, twelve maybe? Around in there, he started taking Amantadine. And it was like a flower. His flower came out of him, and that was like a miracle. Yeah, yeah. It was like there was joy in that boy.

Effective interventions focusing on children or parents played a supportive role in parents’ coping.

All parents shared that their children received some type of intervention and two parents identified

that the kind of intervention for their child had a parent component that focused solely on their


ability to deal with the challenges of rearing a child with ASD diagnosis. MO, a mother of a 22-

year-old daughter, shared how the Son-Rise Program positively impacted her ability to cope and

deal with her own emotions and the challenges of parenthood:

When you [child] graduate school, then you go to work someplace, or if you cannot work in any place, then you have to be institutionalized. And I didn’t want her to be in some places, so I was looking for some therapy to go to help her. And because I couldn’t find anything in Japan, I look in English, and I found the Son-Rise Program. So, that was, in some way, the turning point in our lives. I mean, I have been working with so many specialist about autism – autistic children, ….and what I found different in the Son-Rise Program you know that you have the power to do whatever in your hands to help… I mean, how they can develop is limitless. …I mean, it was the first time that somebody could really tell us or tell me that there is still the possibility that we can help them. Even they cannot talk or be normal, I guess the perspective or the way they see the child was completely different.

Parents reported that finding appropriate diet for their child with ASD, and educating the parents

to better understand diet choices, was positively related to parents’ coping. Some parents reported

that a special diet was significant to ‘understanding’ their child, i.e. “why they did what they did”

and intolerances that impacted their behavior and functioning. Understanding what diet worked

best for their child, in terms which foods were or were not the triggers of unwanted symptoms,

empowered parents and provided some sense of control of the situation. LT, a mother of two

children on the ASD spectrum, shared:

The kids had a lot of food intolerances which go along with autism spectrum, and so they just couldn’t eat anything. No soy, dairy, nuts, or shellfish, and the belief at that time was that strict avoidance was your best hope because there were no – no allergist is gonna decide to deal with intolerances and diarrhea. They just don’t care. Not that they don't care, but people are dying of anaphylactic stuff. Nobody's dying of diarrhea. It’s just inconvenient, but if you don’t eat the thing, you don’t have the problem. Legal Support. Parents utilized legal services to obtain reimbursement from the school

district and to support them in advocating for needed services. TS, a mother of a 19-year-old

daughter with ASD, shared:

When I went back [to the school] saying, “She needs help with the group and the pragmatics around the group,” we were told that she was resistant. She didn’t go to the


[support] meetings. I’m like, “She was never invited.” So, we started a legal process. I worked with the attorney, the neuropsychologist. We got testing to the school prior to eighth grade. Social Support. Parents identify family, in particular spouses, their own workplace,

friends, and their community as sources of social support that impacted their coping, and they were

actively seeking it.

Family Support. Parents reported that family solidarity, reassurance from family members

and overall family support was significant to their ability to cope. TC, a mother of two children,

one with ASD, shared:

[My husband] and I are very lucky that we do have a supportive family… when there are problems, we both have our brothers that we can count on; if we ask them to do anything they will do it. My in-laws, if we ask them to do anything, they will do it.

Eight parents shared that receiving support from their spouse and achieving solidarity, early on in

the process of diagnosis, during the diagnostic process, and later on in the post-diagnosis journey,

as well as in the process of rearing the child with ASD, was significant to their coping, as they did

not feel alone on this journey. SB, a mother of a 22-year-old son with ASD, shared:

He was always – he always made sure he was at appointments and meetings and that kind of thing. Yeah. And you know, we would discuss and we would make plans and he was on board with whatever I wanted to pursue in terms of interventions and things like that, but again, he would be in on the big picture...

MO, a mother of a 22-year-old daughter, living in Japan, told about the support she received from

her husband (a physician), after he received news from the doctor about their child and the

diagnosis as well as in obtaining information and plans for treatment:

I’m so glad that it was my husband who told me [the diagnosis] because in some way, I could just throw my thoughts to him, and in some way, he was the one who was supporting me. It was more support. If it would be the doctor who told me that my child is autistic, I don’t know what kind of support I could have from [the doctor]. But I guess it was because it was my husband, in some way we could talk about it and what we should do. And also, my husband was looking for the place that we could take our daughter. He prepared what


to do. It’s not just that he would tell me that she’s autistic and there’s nothing else, but he in some way gave me some steps that we would follow after that. So, I’m glad for that. Having Own Workplace as Support. Some parents reported that they received support

from going to their place of work because they had a professional space outside of caring for their

child that they could go to for solace and respite. MC, a mother of a 26-year-old son with ASD

from Massachusetts, reported, “When I went to work… a staff meeting, adults. That is so

wonderful...” DE, a father of 23-year-old son, shared that the workspace could provide needed

support in an otherwise heartbreaking isolating situation:

Well, coping was difficult to start with because I had a difficult child and a difficult wife, as it were. [Wife] provided wonderful material support to all of us but I felt no emotional support to me at all. I felt completely alone. And I have always been somewhat of a solitary person so being alone and without resources or without help was not unknown to me. But in this situation, it was just crushing. It was heartbreaking. I would live the stereotype of the father who looks forward to going to the office on Monday so he can get some rest. But the only thing in my life that provided any support was my work environment, where I was well-regarded, did good work, had friendly colleagues. But at home, I felt that I was completely on my own, with no support except what I could generate from my inner strength.

Support from Friends. Social groups, parents of typically functioning children and of

children with special needs and disabilities served as a significant support network for parents.

These groups and parents helped mitigate isolation by providing support in the form of child care,

emotional support and encouragement. LT, a mother of two children on ASD spectrum, shared:

Our best support was the other couple who we shared a nanny with. I worked with the woman in advertising, so we commuted every day together. And we had long had dinner every Sunday night as a foursome. And then when our first kids arrived, we just added them, so [one child’s name] and [second child’s name] were together with our nanny four and a half days a week. But they were together, and (friend) and I would commute to work. And then we all had dinner every Sunday night because they also didn't have any local family. That was our best support.

Other parents shared that they preferred the helpful and meaningful support from other parents to

understand what might be “coming up” as well as the reassurance early on in the parenting journey


that “everything will be OK”, as opposed to reliance on the school system or textbooks to guide

them.

Community Support. Five parents shared that the outside community provided a safe space

for their child and accepted the child, such as school organizations and groups and community

programs. TS, a mother of a daughter with ASD, then in college, shared how the community’s

acceptance of her daughter served as a relief from worries about her daughter’s future:

She also volunteered at a horse farm for children with autism and disabled children. She’s been doing that since seventh grade. So, over five years that – she’s just a dependable volunteer. Every single week, she’s worked with the vets. She has done fundraising for them. She’s done some remarkable work. They know her for the person she is and they’re fine with it.

Another mother, BK, shared that she felt reassured and supported because of her son’s acceptance

in the community social group, “He’s very happy to be a part of the fraternity. He’s part of a club.

You know, a group of guys... and it feels good for him.”

ASD Family Unit

One of the unique outcomes of ways of coping used by the families of children with ASD

was a not usual, pragmatic, approach to parenting in service of family functioning, which is based

on the needs of the child with ASD – despite parents’ personalities, aspirations in life, and whatever

different ideas they had about parenting, parental roles, and life in general. This phenomenon can

be described as the “ASD Family Unit.” This ASD Family Unit incorporates dynamic parenting

roles and decisions, collaborative parenting style, and siblings as collaborators and caretakers.

Dynamic Parenting Roles and Decisions. Parents shared the different ways in which

caretaking was delegated within the family as a way to cope with the challenges of rearing a child,

and these ways were rather dynamic and flexible, i.e. they changed according to the best predictive

outcomes of the situation. Some of the parenting roles were strategically decided, while others


happened consequentially to what was happening within the family dynamic or based on the

parent's strengths and capabilities. Some parents assumed the caretaking role, which involved

advocacy and management of the child’s treatments and needs, while their spouse was in charge

of financial stability and access to financial resources. GP, a mother of a 24-year-old son with ASD

and full-time caretaker, shared:

[I was]… stay at home mom. I did most of the care taking. My husband …IEPs, therapies, he let me handle all of that because I just knew so much more than he did and he just made more money so we could afford all that sort of stuff. That was what he was concerned about.

In several families, the mothers took care of the child with ASD, while their husbands cared for

the other children. One mother described that she felt like a single parent, while another mother

shared that she felt she took care of both roles, of mother and father, to the child. AF, a divorced

mother of a son with ASD, shared her own and her ex-husband’s dynamic and changing roles in

their child’s life and objectives of parenting:

Three days ago, so my son is visiting his dad…. He is coming home tomorrow. His father got upset… first, he said to me… ‘he doesn’t have Autism, you made it up, because you had nothing better to do.’ Like that makes sense…

The same mother shared later: I parent (child with ASD). I am the main parent and I include his dad because it’s in the best interest of his son to feel and know his father is involved. Know what I mean? So I have to coach his dad on certain things on how to approach things with (child).

Two fathers shared that they were mostly involved with childcare. One father described a “role

reversal” in his family, wherein he was his child’s advocate and caretaker and his spouse was less

involved; another father reported that he took the lead role in the child’s care, such as arrangements

for transportation and community resources, while his spouse was involved in caring for

emergencies and in-house errands. CB, a father of a 27-year-old son with ASD, reported:

My wife has come along for emergency room visits but not many other contacts since he


was a toddler… So, what I mentioned about ER visits only was kind of the tip of the iceberg where those responsibilities are concerned. She occasionally transports him but I usually either I am transporting him or arranging for his transportation. Or rather always arranging for his transportation. That has always been my responsibility. I’ve also probably driven him places more than half the time. Well, arranging resources is not something she has ever been prepared to participate in. So, either she will drive him herself to certain places or she will do most of the in-house caretaking that’s called for. But dealing with the community resources, she won’t touch that.

Another parent, LT, shared her decision to stay home as a means of supporting her child in

developing independence later in life:

I also thought if you run the numbers on supporting your kid forever versus stopping working for a while to focus on them, it’s possibly even financially a better decision to stop working or cut back on your work in order to maximize the chances that they’re gonna support themselves. Collaborative Parenting Style. Parents reported that they used new, collaborative, joining

parenting style as the way to cope with their child’s symptoms effectively, as well as be their

child’s guides through their developmental journeys. All the parents stated, in different ways, that

the first ingredient of this style was being curious about the uniqueness of their children with ASD

and willingness to learn more about it. GP, a mother of a 24-year-old son with ASD, said, “I think

all moms... many moms, … especially the special kids’, get their kids really well.” MC, mother of

a 26-year-old son with ASD, shared getting to enjoy her parenthood experiences by putting herself

in her child’s shoes rather than trying to correct or “fix” him:

He loved trains. We spent a lot of time playing. He loved looking in the dirt. It [this behavior] was not normal, and I was always amazed by how he found some little weird detail to explore that would never occur to me. And it was kind of like looking at it through his eyes, which I kind of liked.

AF, a divorced mother of a 24-year-old son with ASD, shared about achieving (unexpected by

others) outcomes by using collaboration with her child with ASD:

Now, three days ago, [ex-husband] sends me a text to say how taken back how [son with ASD] was so helpful, he helped clean up after a family gathering, he walked the elderly aunt to the car…and no one asked him. And I explained to him…what you are seeing are


the results of him being prompted over a long period of time of me raising him to be a gentleman. There’s no dad here, there is no man in this kid’s life. I am the man. I have taught him.

Some other parents shared sentiments that learning to work on themselves and to be flexible is a

“key” to their successful parenting and in experiencing own personal growth, which also benefits

the child. GB, a mother of an 18-year-old daughter, shared:

I mean, you’ve got to be watching yourself and watching your child and changing yourself according to that. I mean, if you’re not willing to be introspective and to think about things, then you’re not going to have growth, but you’re going to keep going head-to-head with your child. I think anybody who has a child with autism, they have to learn this kind of dance. If you are not willing to be flexible in that, I don’t know if you have any hope of being the parent of a child with autism… I think maybe parents who don’t experience growth, I can’t imagine that they supported a child in the way they might have to. Siblings as Collaborators and Caretakers. Parents reported that neurotypical children

have special and complicated relationships with their siblings with ASD. They learn, in their own

way, to overcome sibling rivalry and to become collaborators and caretakers. GP, a mother of a

24-years-old son with ASD, shared how her neurotypical and son with ASD are able to get along

more recently, despite differences:

And now, [neurotypical son] is 21 now and he has said there’s a lot in his older brother he admires. There’s a lot that’s very difficult for him to deal with. He doesn’t have that patience. But he was willing to go to Europe with [son with ASD]. Before they went, the three of us sat down and we talked about what issues – if things come up, [son with ASD] is very sensitive. He [neurotypical son] doesn’t want to correct him in front of other people. We worked out two strategies that they could do. That was one strategy I gave him to deal with the fact that his brother talks to himself and it might be embarrassing for him in front of all these people. Rather than telling him not to say anything, using that strategy makes it easier for [son with ASD] to deal with and gets at the message.

Chapter 5: Discussion

This chapter discusses possible meanings of the study’s findings, interpretations of the

findings, and their implications for social work theory, practice, policy, and professional education,

as well as directions for further research.


Interpretation of the Findings

The findings of this study support existing knowledge about the experience of parents

rearing children with ASD, offer new perspectives on existing knowledge, as well as add to the

dearth of literature about the uniqueness of these parents’ experience, especially positive ones,

which are based on retrospective perception of parents after their children with ASD transitioned

to adulthood. Utilizing the methodology of narrative inquiry was exceptionally useful in

understanding the meaning of the experiences of parents of young adult children with ASD in that

an “insider view” and hence deeper understanding of the lived experiences of these parents was

uncovered, as well as the nuanced dynamics and details that exist in their previous experience.

All three major findings of this study are multifaceted and interrelated. They can be

interpreted by applying ecological approach (Belsky, 1984; Bronfenbrenner, 1979; Derguy,

M’Bailara, et al., 2016; Derguy, Roux, et al., 2018) to an umbrella framework that combines the

theories of stress (Barker et al., 2014), specifically chronic stress in families rearing children with

developmental disabilities (Perry, 1989; Perry, 2004) and ASD (Bluth et al., 2013), as well as

theories of coping (Aldwin, 2007; Aldwin, 2009; Folkman, Schaefer, & Lazarus, 1979). In addition

to these theories, the framework should include positive outcomes of working through life

challenges (Glück et al, 2019) and even achieving growth in all domains of PTG (Tedeschi &

Calhoun, 2004).

The finding of a multilayered compounding stress experienced of parents of children with

ASD supports existing knowledge (Bluth et al., 2013; Derguy et al., 2016; Derguy et al., 2018)

and offers looking at those parental experiences as multilayered and compounding, and the

challenges of each layer – as potentiating and/or generating one another within and between the

layers. Past research portrayed the experience of these parents as a linear set of stresses that do not


influence one another (Hill, 1958; Miodrag & Hodapp, 2010), described the outcomes of stress in

this population as dichotomous – adaptation or crisis (Hill, 1958; McCubbin, & Patterson, 1983)

or focused mostly on individual parents’ (Perry, 2004) or couple’s outcomes (Bluth et al., 2013).

This research expands upon a more comprehensive ecological approach to parental stress of

rearing children with ASD (Derguy, M’Bailara, et al., 2016; Derguy, Roux, et al., 2018) as

multilayered stress experience. It also includes such phenomena as stress proliferation (Benson,

2006; Ward, 2014), allostatic (stress) (over)load (Barker et al., 2014; McEwen, 2017) and

circularity principle (Lazarus & Folkman, 1986), to provide the explanation of a ‘compounding

stress’ quality.

Figure 2 depicts the layers of stresses experienced by parents of children with ASD. The

first layer is represented by the challenges and stressors of parenthood in general, especially during

the transition to parenthood (Crnic, Gaze, & Hoffman, 2005; Crouter & Booth, 2003), with all the

negative effects that often become stressors themselves. The second layer is represented by

additional challenges, stressors and negative effects that became stressors experienced by parents

of children with chronic illness and disability (Compas et al., 2012; Juster et al., 2010; Yamaoka

et al., 2015) and the third layer includes additional challenges, stressors and negative effects that

became stressors experienced by parents rearing children with specifically an ASD diagnosis

(Bonis, 2016; Ooi et al., 2016). Figure 2 shows that challenges experienced by parents of children

with ASD incorporate the challenges experienced by parents of children with chronic

illnesses/disabilities and those of parents in general (especially during transition to parenthood),

and can be compared with the snowball phenomenon, where each next layer adds to the weight of

the whole structure of the experiences of parents rearing children with ASD.

Figure 2


Challenges Experienced by Parents of Children with ASD

That participants reported challenges universal for parents, especially during transition to

parenthood, including stressors prior to birth, difficulties with birth process and difficulties with

adjustment after birth (the first layer of Figure 2) is consistent with previous findings that

parenthood, in general, produces a multitude of negative effects (Glass, Simon, et al., 2016). These

effects are related to emotional wellbeing (Gilbert, 2007; Hansen, 2011; McLanahan & Adams,

1989; Nomaguchi & Milkie, 2003; Ross & Van Willigen, 1996; Simon & Nath 2004; Umberson

& Gove, 1989), worsened physical wellbeing and increased health risk (Wickrama et al., 2001),

worsened mental conditions such as depression and postpartum disorder (Evenson & Simon,

2005), and negative effects on marital, social and parent-child relationships (Knoester &

Eggebeen, 2006; Huston, & Holmes, 2004).

That parents also reported experiences of being isolated from other parents, children and

their own families similar to parents of children with chronic illnesses and/or disabilities (second

layer of Figure 2) is consistent with previous research (Konrad, 2006; Lopez, et al., 2008; Scrogie,


Wilgosh & Sobsey, 2004). Similarly, that parents reported that their child’s illness-related

developmental and medical issues as negatively contributing to their experience, confirms the

findings in previous literature (Barnett et al., 2003), especially when children exhibited

intellectual, neurological, mental and behavioral problems (Baker et al., 2005; Einfeldet al., 2006;

Feldman et al., 2007; Gray et al., 2011; Lecavalier et al., 2006; Muscara et al., 2015; Nachshen, et

al., 2005). That parents reported significant stresses added to their parental experience by obtaining

a chronic caregiving role and the need for a whole family’s reorganization also confirms prior

literature about parents of children with chronic illnesses (Epifanio et al., 2013).

The finding of this study that parents of children with ASD (the third layer of Figure 2)

have higher stress levels than any other group of parents is consistent with previous literature

(Bonis, 2016; Ooi et al., 2016; Pisula, 2002). This research also confirmed findings in previous

studies that reported additional parental stresses related specifically to ASD diagnosis. These

include a diagnostic process that was lengthy and lacking clarity, lack of parental education

(Kozlowski et al., 2011) and post-ASD diagnosis challenges including ongoing symptoms (Davis

& Carter, 2008; Zwaigenbaum et al., 2005), loss of “normality” (Ruiz-Robledillo et al., 2014),

mourning the “ambiguous loss” of a child they will never have (O’Brien, 2007; Boss, 2007),

societal stigma and judgments (Kinnear et al., 2016), low level of societal support (Breevaart &

Baker, 2012), insufficient family support (Keenan et al., 2010; Coulthard & Fitgerald, 2007), and

lack of effective interventions for their families (Catalano et al., 2018). The experience of parenting

a child with ASD and all its unique stressors could be further exacerbated by socio-political factors.

Multiple marginalized positions such as being a member of an ethnic, racial or religious minority

group, experiencing disability or identifying as LGBTQ already bring about systemic and/or

institutionalized barriers to obtaining support and overall acceptance, and the intersection of them


with the stressors associated with parenting a child with ASD could potentially bring about even

more strain and challenge to securing resources, support and community.

The finding that parents of children with ASD experienced a multilayered and compounded

stress supports prior literature regarding other populations with multiple layers of stressors that

accumulate over time and are experienced as compounding stress or trauma; e.g., asylum seekers

(Sinnerbrink et al., 1997) and those experiencing multi-, sexual or domestic abuse (Edmund &

Bland, 2011). Expanding this lens of a multilayered and compounded stress and trauma to

examining experiences of parents of children with ASD is the contribution of this study.

Because there is no one theory that would explain the finding of complex multilayered

compounding stress experienced by parents of children with ASD, we applied the ecological

conceptual framework of multilevel theory (Dunn, Masyn et al., 2015) to the theory of stress

(Selye, 1956) and stress-related constructs. Conceptually, the multilevel theory examines one or

more systems that are often hierarchically nested within one another and may vary across historical

or developmental time (Dunn, Masyn et al., 2015). This framework presents the extension of

Bronfenbrenner’s (1979; 1986) ecological systems theory of human development, which examines

multiple layers of various interlocking social systems, but it was not utilized in the earlier studies

to explain experiences of various layered stresses in parents or any other groups. Bronfenbrenner’s

(1979; 1986) ideas are represented in Figure 2 by a succession of concentric circles that depict the

layers of stress that parents of children with ASD experience within themselves, while in

Bronfenbrenner’s model, there was a representation of the social systems people live in. This way,

the ecological multilevel theory as applied to this study provides the layered perspective of the

experiences of parents.


The stress theory that describes stress as the experience of people not having adequate

internal and external resources to meet environmental demands (Greene, Write, et al., 2019), as

applied to this study, offers the understanding of various stresses in parents’ lives as a

“choreographed” state of stressful events rather than a normative physiological state. The other

three stress-related concepts utilized here (allostatic stress load, stress proliferation, and circular

causality) together, address the compounding nature of the layered stresses.

The allostatic stress (over)load concept (Barker et al., 2014; McEwen, 2017) explains the

biological effect of piled-up stresses experienced by parents as measurable chronic stress, which

can even cause the post-traumatic stress syndrome (PTSS) that develops over time (Casey et al.,

2012).

Stress proliferation construct (Benson, 2006; Pearlin, et al., 1997; Ward, 2014), which is

defined as “the development or expansion of a stressor or set of stressors within and beyond a

situation, resulting in additional stressors that were not originally present” (Pearlin, Aneshensel,

& LeBlanc, 1997, p.223). Looking into the effect of stress proliferation construct in parents of

children with ASD (Benson & Karlof, 2009) as well as other marginalized populations (LeBlanc,

et al, 2015) is not new; and prior studies found that this construct is significant in heightening one’s

stress level and causing strains in one’s physical, mental health, and relationships. As applied here,

stress proliferation explains how the same type of stressor that is present in each layer of parental

experience (described in Figure 2) can be experienced as the add-on and compounding. E.g., the

finding that parents experience challenges with accessing needed resources and support exists at

each level of the parental journey. At the first level (of parents in general), the challenges with

accessing needed resources and support could be caused by financial strain during the transition

to parenthood. At the second level (of parents with children with chronic illness or disability),


these challenges are increased by additional causes, such as need for home-based services and lack

of professional support and communication between various providers. And, there is an even

greater stress for parents of children with ASD to access resources and support because the

symptoms of ASD are unpredictable, pervasive (and never “go away”), and they are stigmatized

by the general population. This potentiates the stress of accessing resources and support that was

already strained in the first place.

Circular causality principle (Lazarus & Folkman, 1986; Kelledy & Lyons, 2019) provides

an understanding of the non-linear relationships between various stressors and how some of the

effects of the stressors become stressors themselves. The construct of circular causality posits that

while all effects result from multiple causes, they in turn influence the causal pathways (Murray,

2006). It is best illustrated by the metaphor of a “hamster wheel,” or circular interactions of mutual

influence creating an interactional rather than cause-and-effect pattern (Kelledy & Lyons, 2019).

For example, as it applied to this study, frustrations related to communications with family or/and

professionals impact parents’ satisfaction with their role as a parent, which in turn, impacts their

marital relationships; and this causes more frustrations around parental roles. This way, effects of

processing stressors become stressors themselves, and stress load heightens and attains a

compounding quality.

The second finding that parents of children with ASD found benefits from their

parenthood experience supports the literature that reports parents of children with ASD may

experience improved well-being (Bayat 2007) and posttraumatic growth (Strecker et al., 2014;

Myers, et al., 2009; Samios et al., 2009). Specifically, prior studies describe change in parents’

beliefs and self-reflection, gaining greater patience, positive changes in their life, appreciation, and

a new philosophy of life (Zhang, Yan, et al., 2015; & Picoraio et al., 2014), as well as enriched


relationships and sense of support when they became advocates and helped others through their

parenthood journeys (Fleischmann, 2004). That all 16 parents manifested at least one domain of

PTG, and that more than a half of them manifested two or more domains of PTG, is a contribution

to existing knowledge about experiences of parents of children with ASD.

This finding of stress-related growth responses can be explained by the meaning making

model (Park et al., 2006; Park, 2010), which involves searching for why one is looking for a more

favorable understanding of the situation and its implications, even in the face of traumatic

experiences (Frankl, 1984; Neimeyer & Thompson, 2014), as well as by the PTG theory (Calhoun

& Tedeschi, 1996; 1998; 2004a; 2004b, 2006; & 2013), which provides the explanation of how

engagement with the traumatic event can cause growth. Similar growth and positive outcomes

have been reported in other populations with chronic and/or multiple traumas, e.g., patients with

cancer (Ochoa, Sanchez et al., 2019). These theories complement each other because the meaning

making model aims for the outcome of meaning making while the ruminations (that are the drivers

of meaning making) are not designated as making meaning in the PTG model. Using them together

combines the why and how.

The first stage in the process of PTG is a seismic/traumatic event that is felt as a “before”

and “after” experience. While this is exactly how parents describe the start of their journey of

parenting a child with ASD, their specific traumatic event differed for different parents. For some,

it was the diagnosis itself or some characteristics of the process leading to the diagnosis, e.g.

lengthy process or lack of clarity in finding out what is wrong, as well as ASD related behavior

and the societal stigma related to it. The moment of receiving a diagnosis of a life altering condition

being experienced as a traumatic event has been reported by people with various cancerous

conditions and has also been perceived as the beginning of the PTG process (Chan, et al, 2018).


For other parents, the meaning assigned by them to the diagnosis of ASD (rather than the moment

of diagnosis) became a traumatic event. For example, some parents attributed to the diagnosis of

ASD the meaning that their child may never be independent, be accepted or integrated into society,

and that was traumatizing. This is similar to findings regarding people with other chronic

conditions, that the meaning they assigned to the diagnosis was painful and traumatic rather than

the diagnosis itself. For example, for some patients who survive a stroke, understanding that the

diagnosis meant that they will “never again” walk, cook, and take care of their family and pets

becomes a seismic event (Garton et al., 2017; Samsa & Matchar, 2004).

For some other parents, the traumatic event was the manner in which the diagnosis was

delivered. It was traumatic for parents to experience lack of professionals’ empathy when

unfavorable future outcomes of their child’s diagnosis were delivered, as well as lack of validation

of their intuition and concerns prior to and during the process of the diagnosis, and lack of

empowerment about their role in their children’s development, and information about available

support. Similarly, the insensitive manner of delivery of the diagnosis in progressive or end-of-life

disease (Van Vliet & Epstein, 2014) or even in general practice or surgical specialty (Girgis &

Sanson-Fisher, 199) can be perceived as traumatic, both to the patients and their loved ones.

That all parents in this study found that the point of diagnosis was one of many points of

trauma, as they experienced different times of the parenthood journey as traumatic or as the

“hardest time,” explains the finding of “budding,” cascading, and evolving PTG, when each

“seismic event” triggered its own “independent” PTG process, as presented in Figure 3. Other

seismic/ traumatic events occurring during the parenthood journey that were identified in this

study: symptomatology of ASD and mental health comorbidities; societal stigma; lack of social

support; lack of professional support; and lack of life transition services. This way, parents are


continuously going through the comprehensive PTG model, and their automatic ruminations are

changing to reflective and more productive ones, and this process is never over, especially because

of the ever-evolving, “cascading,” PTG process in this population. Other populations with chronic

daily challenges, such as people with multiple sclerosis, are known to be involved in this type of

PTG-based process as well (Bogosian, Morgan and Moss-Morris, 2019).

In looking at the proposed cascading/ budding PTG process, it is useful to connect it with

McCubbin and Patterson’s (1982) proposed Double ABC-X theory which was an expansion of

the original ABC-X model by Hill (1958). The ABC-X and Double ABC-X models used in

family system theories are very useful to conceptualize the PTG model which represents a

reflection of the process that people are going through while the ABC-X and Double ABC-X

models represent a list of ingredients that lead to crisis in families or protect the family from the

crisis. The ABC-X formula used by Hill (1958) was originally designed to assess the proneness

to crisis in families that experience the "crisis-precipitating event" and included family crisis-

meeting resources, and families meaning making of the crisis precipitating event. In the Double

ABC-X formula proposed by McCubbin and Patterson (1982), they added to the model another

ingredient which was the post-crisis situation and the coping strategies that families employed.

By doing that, McCubbin and Patterson contributed to the family crisis theory by introducing not

only the pre-crisis and crisis stage of family's affairs, but also the post-crisis evaluation. Among

the post crisis variables, McCubbin and Patterson introduced "pile-up" of stressors from five

sources: the initial stressor, the hardships from initial stressor that persisted over time, the

transitions, the consequences of coping efforts, and the ambiguity within the family as well as in

the society. In terms of understanding the cascading PTG phenomenon as it fits into the Double

ABC-X model (McCubbin & Patterson, 1982), the cascading PTG phenomenon provides the


explanation for new resources that parents and families get while getting through the process of

struggle with stressors of being a parent of a child with ASD.

Figure 3 Evolving/ “Budding” / “Cascading” PTG in Parents of Children with ASD

Note. Parenthood journey for parents rearing children with ASD includes multiple traumatic/ seismic events occurring throughout the journey, such as:

● Lengthy & vague diagnostic process; ● Established ASD diagnosis ● Meaning assigned to ASD diagnosis ● Miscommunications from professionals about the ASD diagnosis ● ASD symptomatology, especially communication deficits and inappropriate

behaviors ● Societal stigma ● Lack of social support ● Lack of professional support ● Lack of life transition services

The finding that the proximate socio-cultural factor of perceived presence of social support

from peers, other parents of children with ASD, family, friends and professionals facilitates PTG

agrees with the PTG model and confirms previous literature about this population (Zhang, et al.,

2015). However, that more than half of the participants reported having experienced PTG despite


the lack of social support and despite dissatisfaction with professional support throughout their

parenting journeys adds new knowledge about the relationship of the social support and the PTG

process in parents of children with ASD. Previous literature (Schroevers et al., 2010; Xuji et al.,

2017) suggested that higher PTG score is dependent on a higher level of social support, and this

was supported by the current study. The duality of the relationship of social and other supports

with PTG that was discovered in this study suggests that although existence of social support

facilitates PTG process, lack of such social support and various professional supports represents a

significant stress, which calls for action and for restructuring parental world assumptions, and thus

can be considered a new seismic event that starts a new “budding” PTG process. Also, the finding

that building a supportive community around the parents of children with ASD as a part of the

ASD family unit rather than separate individuals, contributed positively to parents’ coping. It

helped parents break through isolation and find joy in joining the often-stigmatized behaviors of

their children. All this is a contribution to current knowledge about PTG in families of children

with ASD.

The finding that distal sociocultural influences helped parents to manage emotional distress

or/and caused redirection of ruminations into deliberate reflective constructive ones, and resulted

in revisions in parents’ narratives and schemas, supports other literature about socio-cultural

influences on parents of children with ASD diagnosis (Zuckerman, Sinche et al., 2014). Distal

sociocultural influences included societal, ethnic, and religious cultural themes, and were different

for different parents. E.g., a Peruvian who lives in Japan reported that societal cultural themes of

both her foreign and native cultures affected her wellbeing and peace of mind in both negative and

positive ways. Another parent, an Orthodox Jewish woman, experienced ethnic religious cultural

influences in the form of acceptance of her child as a God’s will. This supports findings of strong


religious beliefs and coping with trauma and PTG in other populations (Bryant-Davis & Wong,

2013).

The finding that parents experienced at least one of the five PTG domains support the PTG

model (Tedeschi & Calhoun, 2004, 2006). The domain appreciation of life may explain the finding

that parents developed a new philosophy about what is most important and changed priorities with

greater focus on understanding their child and the child’s wellbeing and happiness rather than

social status, career, and how things “should be.”

This finding agrees with prior findings of appreciation of life in parents of children with

ASD (Manning, et al., 2010; Ekas, et al., 2010; Safe, et al., 2012). That parents of children with

ASD are deeply devoted to their children supports similar prior findings (Wayment, et al., 2019);

however that parents were so deeply integrated with their children with ASD to the degree that

that they were not able to distinguish between the children and themselves, adds to prior

knowledge. It seems that the parent-child dyad (not the parent as the individual) enters into the

PTG process, as changes in parents’ philosophy of life are always filtered through the needs of the

child.

Relating to others was manifested in several ways. First, by parents’ sharing a deep

connection with their child by “joining” children in their world, rather than pushing and pulling to

get the child into the parent’s world, and supporting them in a unique, collaborative, way. Second,

parents’ increased compassion and relatedness to their children and to other parents’ struggle with

familiar stresses. Third, parents of children with ASD experienced improved relationships with

their extended family members and other people. The findings that parents “assimilated” in their

child’s world in service of their child’s needs to be understood by someone is a new addition to

the knowledge about experiences of parents of children with ASD. It seems like this assimilation


in the child’s world was happening without full recognition by parents of them voluntarily isolating

themselves from the rest of society, and sometimes even from their spouses, other children, and

family members, as this was the only way to stay in the child’s world and to be the social conduit

of nurture and wellness for the child.

The domain of personal strength was manifested in parents’ changing their perception of

self and reporting gaining the freedom to be oneself as well as uncovering strengths they did not

know they possessed and gaining wisdom, including the wisdom about obtaining needed support.

This supports similar findings in existing literature about this population (Mancil et al., 2009) and

other populations, e.g., disabled war veterans (Aflakseir, 2010) that seeking various supports

boosts one’s strength in coping with traumatic experiences.

Parents’ personal strength became clear to them only throughout their parenthood journey,

which in turn allowed them to appreciate other transformations in their life. It can be explained by

the developmental nature of PTG, which Calhoun and Tedeschi described as not only an outcome,

but also a process (Joseph, 2019). Achieving growth in one domain of PTG may open the door for

further growth and development in other areas of growth.

The finding that parents were eagerly undertaking new paths in life, involving themselves

in new careers and leadership supports previous literature about manifestations of the PTG domain

of new possibilities. The finding that parents found new careers in servicing the ASD community

and become effective advocates for the whole ASD world, as they know it inside-out, supports

similar prior literature (Boshoff, et al., 2018; Ewles, Clifford & Minnes, 2014). That people

embark on a new life path after a traumatic event or exposure, manifesting the PTG domain of new

possibilities was documented following other traumatic events such as losing a parent or a child,

bereavement by suicide, parenting a child with a disability or with Down Syndrome (Counselman-


Carpenter, 2017; Fazio & Fazio, 2005; Konrad, 2006; Smith, Joseph, & Das Nair, 2011; Talbot,

1998).

Parents also exhibited new ways of being by expressing creative ideas for improving the

lives of families in the ASD world, sharing their wisdom of dealing with the challenges presented

by the child’s ASD diagnosis with parents whose children are still young and those who are just

starting their parenthood journeys. This can be seen as manifestation of multiple domains of PTG,

such as relating to others, appreciation of life and finding new possibilities. The finding of various

ideas that parents had of how to improve lives of families in the ASD world can also be supported

by Calhoun and Tedeschi’s (2006a, 2012) proposal about expert companionship. While Calhoun

and Tedeschi (2006a, 2012) discuss expert companionship by professionals in trauma therapy

settings, the parents in this study showed the will and readiness to become expert companions to

other parents and families living in the ASD world. This is an expansion of this concept to expert

companionship by parents of children with ASD.

The finding that parents experienced a deepened sense of spirituality and faith, an increased

sense of importance of spiritual matters, faith and belief in God as supportive, belief in their child

being an expression of God’s will, fitting what has happened into held beliefs, faith in

professionals, the belief that parent was chosen to experience this journey, are all manifestations

of the PTG domain of spiritual growth. This supports prior findings that parents of children with

ASD manifesting this domain of PTG (Ekas, Whitman, Shivers, 2009; Ellis, 2018). Prior research

has shown that religion and spirituality play important roles in the quality of people’s lives, their

coping and search for meaning following traumatic life events; e.g. Arnoldo, Hunt et al. (2006)

described survivors of burn injuries who acknowledged the importance of religion and spirituality


in their treatment, and endorsed the request for professionals to address religion and spirituality in

their interactions.

The finding that the PTG domain of “relating to others” manifested in all parents

participating in the study, while other domains did not (e.g. the domain of spiritual growth was

reported by 50% of study participants) is a contribution to the knowledge about parents rearing

children with ASD, as well as to expression of PTG in this population. Most likely, the domain of

relating to others served as an access to growth in all other domains, possibly because the most

cognitive PTG work that study participants needed to do was in the area of relating to others: their

children, their spouses, medical professionals, extended family and friends. It is also possible that

what children with ASD were lacking, the relating to others part of their being, was developed by

the parents, and it served a dual role; i.e. lending their children the ability to relate (parallel to

landing the ego in psychotherapeutic work), and enabling access to growth in other areas of life.

This can be theoretically explained by combining the PTG framework with the Parent

Development Theory (PDT) (Mowder, 2005), which looks at parents as a part of the parent-child

duo, where the parent part of the duo adjusts to the needs of the children part of the duo, while

being involved in the PTG process.

That study participants perceived the study itself as a benefit can be compared to other

accounts of finding the benefit from oral or written disclosure of traumatic experiences through

creative writing (Hussain, 2010) and various talking therapies (Beck, 1976), as well as finding

emotional satisfaction from “being heard” through participating in research (Berger & Malkinson,

2000). That parents expressed their satisfaction with the study as a benefit, source of awareness of

their own wellbeing, and perception that study itself was a healing and enlightening process – is

an addition to this area of research. Because suppression or denial of emotional processing, oral or


written, have negative effects on physical and mental health (Wegner & Pennebaker, 1993), most

of the forms of psychotherapy include talking about emotional experiences as important for healing

(Beck, 1976). Theoretically, these findings can be explained by the PTG theory, specifically

related to the domain of appreciation of life (Calhoun & Tedeschi, 2014).

The findings that parents’ positive comments about the study process itself provides a rich

understanding about the motivations of parents who participated in the study and their hopes for

where the findings of the further research will be most useful. The interview process prompted

parents to gain insights about their own strengths and their own importance in their family and

children’s lives. It also allowed them to reflect on this and appreciate the peace of mind that their

parenthood experience brought to their lives.

To some parents, it was a matter of therapeutic healing to share their story and have it

memorialized through this study; for others it was a matter of duty and service to the community

of parents that are going through the same journey; and to some, it was an exercise of full self-

expression on behalf of ASD world. This speaks to Calhoun & Tedeschi’s (2006) assertion that

PTG is not only an outcome of the struggle with traumatic experiences, but it is also a

developmental process that keeps on evolving, and this study is a testament to this process.

The finding related to ways of coping in parents of children with ASD supports available

knowledge about the way parents of children with ASD cope (Mancil et al., 2009; Ventola, et al.,

2018), and adds new knowledge about the family’s ways of coping as the “ASD family unit,”

which include the new collaborative parenting style employed by parents, the dynamic parenting

roles and decisions, and siblings as collaborators and caretakers. This study also confirmed reports

that parents of children with ASD utilize problem focused and emotion focused coping strategies

(Vernhet et al., 2018) and supports the existing view of emotion focused coping strategies as


ineffective, while challenging some previous literature that framed the problem focused strategies

as mostly effective (Miranda, et al., 2019). This study provided new information that problem

focused coping strategies could be both effective and ineffective. For example, some parents

utilized problem focused strategies for coping, as if ASD could be fixed or eradicated somehow if

a certain strategy was implemented when in fact, ASD is not a state that “goes away,” leaving

parents still facing the same problems and stressors, perhaps even larger than the ones they faced

before. Therefore, implementing problem focused strategies for that purpose is ineffective as

parents see it.

This study also contributed new knowledge that parents of children with ASD used other

types of coping not previously mentioned in existing literature, such as biology focused coping,

aimed at stress management techniques with the intention of changing the body’s response

(Wilson, 2010). These include specifically mindfulness practices, meditation, and physical

activities. Utilization of biology focused coping can be viewed as parents looking for and finding

ways to self-regulate through the mind-body approach, while their life is consumed by their child’s

care and various multilayered stresses that cause a lot of daily anxieties. This can be seen through

the lens of the theory of affect regulation/ self-regulation (Schore, 1994), which posits that the

modern theory of attachment is in essence a regulation theory, because attachment represents a

“mutually enriching dialogue […] between the biological and psychological realms” (Schore, 2000

p. 24). As main caregivers and life partners for their children, these parents are able to lend their

self-regulated body ego to their children as suggested by psychodynamic treatment models

(Dewald, 1994; Misch, 2000).

That parents accumulated parenting roles as their children grew older, and not just changed

their roles (from being a caretaker to a playmate, then mentor, then guide and expert companion)


can be explained by Parent Development Theory (PDT), a theoretical framework that examines

parental roles including the important social role which parents play, and parent development

(Mowder, 2005). PDT looks at the parent role as primarily an individual creation that is based on

one’s prior experiences (in communication with the child and the outside world regarding the

child) and their expertise and knowledge about what works and what does not. Parent’s own

development and coping with stressors that they face are changing constantly with whatever

ongoing child care demands and whatever ongoing new knowledge they obtain. Parental roles

change over time for all parents, proceeding from the caretaker to a mentor, and a guide. While

parents of children with ASD continue to be caretakers and guides, they become also experts in

the child’s condition and expert companion.

This study also adds new knowledge to existing parenting styles, which are defined as a

“constellation of [parent’s] attitudes toward the child that … create an emotional climate in which

the parent’s behaviors are expressed” (Darling and Steinberg, 1993, p. 488). In addition to the

known authoritative, authoritarian, indulgent/permissive, and uninvolved/neglectful parenting

styles (APA, 2020; Bi et al., 2018), parents in this study exhibited a new “collaborative” parenting

style characterized by full immersion and joining in their child’s life. This style is based on

parents’ empathic and understanding stance, and willingness to isolate from others, in service of

their child, while providing a voice and being an advocate for their child in addition to traditional

parenting roles. This study also brought to light the universality of coping of parents of children

with ASD, in terms of all parents developing this new, collaborative, parenting style. And, unlike

other parents who expect reciprocity from their child, these parents offer their collaboration

unconditionally.


The findings of a new, “collaborative,” parenting style can be explained by both PDT and

the family life cycle theory of social work (McGoldrick & Shibusawa, 2012). The latter asserts

that transitions through the family life cycle include re-aligning relationships and redefining roles

within the family, which might create perceived crisis, because these changes deviate from what

society sees as a norm, but for these parents, it is an expression of their way of coping with the

special needs of their child.

Parents of children with ASD develop a coping strategy of becoming an expert, the chief-

operating officer, in their child’s care. For example, during the post-ASD diagnosis period, the

parents rather than the professionals were figuring out their child’s diet and making decisions

regarding use of medication for symptoms. This provided comfort, value and peace of mind for

parents’ coping, as they knew their child in and out. This way of coping can also be viewed

through the lens of PDT, which supports the view that parental roles are evolving as the needs for

parent-child relationships change.

The current study supported previous research that professional and peer support that these

parents receive are significant factors contributing to parents’ ability to cope well (Atkin & Ahmad,

2000; Canary, 2008). This study also offers new information about additional support factors that

were perceived by parents as contributing to their coping, which included being able to choose for

their children with ASD interventions that they viewed as effective (including alternative approach

programs like Son-Rise); and being offered family-focused interventions rather than just

interventions for individual children and parents.

The finding that various supports (social, professional and others) contributed to the coping

of parents can be explained by PDT, which looks at parenting development as a dynamic process

existing within a parent-child dyad. Although PTG theory incorporates various supports as


proximal influences within the Comprehensive PTG model, this model was originally proposed

by Calhoun and Tedeschi (1999, 2004, 2006) for illustrating the PTG process only in individuals,

then later, it was extrapolated to families too (Berger & Weiss, 2009). In the meantime, PTG on

the dyadic level was explored in populations such as couples (Lim, 2018) and combat veterans and

their siblings (Zerach, 2020), but not in dyads of parents and children.

That similarities existed in the coping and factors related to it of parents from different

ethnic/ cultural backgrounds (American Asian/ Chinese, Italian, Russian, Jewish, Scottish/Irish;

and Japanese) speaks to universality of the ways parents of children with ASD cope. The PDT

perspective would explain this universality because the parent/child development, as it relates to

rearing children with ASD, is influenced more by the needs of the child with ASD that trigger

changes in the parental roles, and it is universal for every culture because ASD is a

neurodevelopmental disorder with unique set of child-related factors.

Implications of Findings

The findings of this study offer implications for social work theory, practice, policy,

professional education and future research. Due to the limitation of a non-diverse sample, all

implications can only be limited to parents who are similar to those that opted to participate in this

study, and therefore, it is unknown if it applies to other diverse populations of parents.

Implications for Social Work Theory

Findings from this study offer three ideas for social work theory related to the multilayered

compounding stress experience of parents rearing children with ASD; expression of all domains

of PTG in parents of children with ASD as well as cascading and developmental nature of PTG;

and the use of unique coping mechanisms by parents of children with ASD, including developing

their own collaborative parenting styles and developing the “ASD family unit.” All three findings


can be conceptualized through the ecological framework of various theories that involve traumatic

stress and its vicissitudes, including Comprehensive PTG model, as well as the theories that focus

on families and systems. There’s no one theory that would encompass this approach, but these

findings have potential to enrich multiple existing theories utilized by social work.

To illustrate, this study expands the multilevel theory conceptual framework to integrate

the circular causality, stress proliferation, and allostatic load concepts in order to explain the

compounding nature of the nested stress experiences and the non-linear relationships between

stressors within each layer and between the layers (Hepworth et al., 2009) as well as the effects of

the stressors becoming the stressors themselves (Kelledy & Lyons, 2019). Utilizing the concept of

circular causality together with the multilevel theory aids in understanding the complexity of these

relationships, which vary across time (e.g. developmental, historical or intergenerational time),

and the perception of the parents’ experiences as a compounded stress (Barker et al., 2014).

Similarly, this study’s finding of multilayered compounding stress experience is a

contribution to the social system theory (Parsons, 1951) as it introduces the multilayered structure

and the compounding nature of the interconnected experience of Parsons’s (1951) “action units.”

This finding is a contribution to the modern social system theory (Lee & Brosziewski, 2009),

which assumed that meaning making is available only in light of self-reference, by offering to look

at the interrelationship of meaning, observation and communication between the layers of

experience of each person (parent), and within the milieu of society and culture. For example,

these parents did not have any point of self-reference in regard to dealing with ASD, from the

beginning of their journey (pre-diagnosis), and the self-reference based meaning making changed

as these parents went through all the stages of parenthood as their children with ASD grew to

adulthood.


The findings of the multilayered experience have an implication for parental role

development theory (PRDT) (Galinsky, 1987; Ryder & Decker, 2015). This theory posits that

parents develop as they take on various parental tasks which depend on the chronological age of

their child, “graduating” from one role to another: from image-making to nurturing, to authority,

to interpretive, to interdependent, to departure. The finding that parents continued to add parental

roles, as their children grew, instead of graduating from one role to another, and that they were

“piling up” those roles, with all responsibilities that these roles imply – expands the PRDT, as it

applies to this population, and possibly to other populations of parents who care for children with

other developmental or/and multiple chronic medical or/and mental health conditions.

The findings that parents of children with ASD have potential for PTG and find benefits in

all five domains of PTG support prior knowledge related to social development theory (Midgley

& Conley, 2010), which is focusing on personal growth and strength, rather than deficiency or

pathology. The findings of this study show that although the medical world looks at parents

through the lens of pathology of their children, i.e. ASD, these parents pioneered new ways of

being and finding joy in it, despite the pathology. The contribution of this study is that social

development theory can be extended to all adverse populations, including caregivers, parents, and

families, and not only applied to people immediately affected by the disorder (ASD).

The findings that all the parents in this study reported PTG in at least one domain suggests

the high rate of PTG in this population, despite the original assertion of PTG theory (Calhoun &

Tedeschi, 2013) about not expecting that everyone who deals with trauma will experience PTG.

This agrees with other studies finding that there is a moderate-to-high rate of PTG in diverse

population groups, such as those experiencing various medical conditions, accidents, or having

stressful professions (Wu, et al., 2019).


This finding also suggests that multiple traumatic/seismic events can start multiple PTG

processes in one individual. E.g., in this study, the multiple traumatic events identified in the

findings chapter triggered the development of PTG that can be seen as a budding, cascading,

exponentially multiplying process (as depicted in Figure 3) that is multilayered, evolving and

dynamic, rather than a linear static one portrayed in the comprehensive PTG model (Calhoun &

Tedeschi, 2006). Although some PTG research alluded to a potential recursive nature of PTG in

some groups of people (e.g. older adults), it did not conceptualize how this process occurs

(Calhoun & Tedeschi, 2004; Tedeschi, Calhoun, & Groleau, 2015).

The finding that the journey of parenthood and rearing a child with ASD presents in

addition to many difficult and traumatic times, experiences of personal growth and benefits,

expands the trauma theories (Briere & Scott, 2014; Felitti, 2002; Herman, 1992; Ogden et al.,

2006; SAMHSA, 2015; Tedeschi & Calhoun, 2004), which were originally focused mostly on

disruptive and negative consequences of trauma: “Traumatization occurs when both internal and

external resources are inadequate to cope with external threat” (van der Kolk, 1989, p. 393). So,

the second finding of this study further reinforces the duality of trauma, which despite the multiple

complex traumatic experiences, includes also positive outcomes, particularly PTG.

The findings of the new ways of coping and even developing a new (collaborative)

parenting style and developing an “ASD family unit” expand and refine theories of coping

(Folkman, 1997; Lazarus & Folkman, 1984; Lazarus, 1990), adjustment (Nilsson, 2007), the

family systems (McCubbin, Thompson, & McCubbin, 1996), as well as the family life cycle theory

(Carter & McGoldrick, 1980).

The finding that parents of children with ASD form a unique ASD family unit contributes

to the family life cycle theory by bringing the understanding that the family (not just each


individual parent) experiences the family life cycle stages not as sequential, but as collapsing onto

one another, and that parents are taking unusual coping measures, including the collaborative

parenting style, as well as role of expert peer companions for their children diagnosed with ASD.

The finding that ASD family unit members also experience the PTG process, with multiple points

of traumatic experience for each of them, and that this phenomenon potentiates the development

of PTG – is also a contribution to the above theories.

The findings that parents of children with ASD utilized the biology-based practices and

interventions and that they were considered effective by parents not only for affect- and self-

regulation of the parents, but also for improvement of the whole family functioning and self-

regulation/ behavioral improvement of their children with ASD – is a contribution to the modern

theory of attachment/ affect regulation (Schore, 1994, 2000), because of this connection of parents’

self-regulation with their children’s ability to self-regulate.

Implications for Social Work Practice

This study suggests implications for social work practice in clinical and educational

settings, specifically offering services for families with children diagnosed with ASD and trauma-

sensitive practice.

Clinical Social Work Practice for Families with Children with ASD and Trauma-

Sensitive Practice. The findings that parents expressed dissatisfaction with the diagnostic process

and service provision before, during and after the diagnosis of ASD, namely their concerns and

“gut feelings” intuition not being validated, as well as them not being effectively involved in the

planning of treatment after the diagnosis, not being informed about their child’s future and

capabilities, and professionals not being experienced in “breaking bad news” empathically,

prompts numerous suggestions for the state of clinical practice. For example, psychoeducation by


social workers of other professionals who work in the ASD setting should focus on all the above

issues. That parents of children with ASD experienced communication with medical professionals

as being exhausting and insensitive, and physicians showing mostly “technical” proficiency about

the diagnosis rather than communication skills, and often neglecting patients’ emotional

psychological stress and suffering (Rabow & McPhee, 1999), prompts the suggestion that social

workers should provide consultation to medical professionals about communication skills of

“breaking bad news” (Vandekieft, 2001, p. 1975), facilitating prompt and effective treatment

planning and follow-ups with parents, as well as promoting effective communication strategies

with parents pre-, during, and post- diagnosis. These should include training practitioners to be

empathic listeners and to be compassionate, trusting parents’ intuition, and exploring parents’

concerns and instincts about their child.

Parents also need to have better involvement in decision making regarding ASD treatment

and services. They should be provided with information about early ASD symptomatology, the

diagnostic process, prognosis, treatment options, and goals associated with their child’s care and

family support. Within this scope of information, there should be an understanding of the potential

positive outcomes of parents’ struggle with their very negative experiences, as well as resilience

and PTG (Calhoun & Tedeschi, 2006; Luthar, 2006). The finding that parents of children with

ASD are not adequately informed about available policies and resources suggests that social

workers need to be educated themselves, and then educate other professionals of interdisciplinary

teams, as well as educate the families of children with ASD about what resources and policies are

available.

The finding that all parents of children with ASD experienced growth in at least one or all

domains of PTG suggest that professionals working this population group should be trained to


identify what is going well for the parent, the child, and the family, recognize any positive

outcomes of traumatic experiences of these parents, including manifestations of all PTG domains.

Social workers should become familiar with the Comprehensive PTG Model (Calhoun &

Tedeschi, 2004; 2006) and all the parts and stages of PTG process, so they could recognize the

signs of PTG. Also, the finding that PTG in parents of children with ASD evolves over time as a

multilayered “cascading” developmental process contributes to social work practice by providing

a more complete understanding of how to approach work with clients and families of children with

ASD. Social workers should be trained in facilitation and fostering PTG by utilizing cognitive,

narrative, and existentially based interventions (Calhoun & Tedeschi, 2006), as this may inform

the provision of effective support of parents’ self-agency, hope, guidance, encouragement, and

empowerment to families of children with ASD, as well as help create new meaning of their

traumatic experience. This ability to facilitate and foster PTG will allow social workers to become

expert companions who work in tandem with parents of children with ASD, focusing on benefit

and growth finding in people who struggle with traumatic experiences in addition to traditional

trauma sensitive practice techniques of exposure and desensitization (Calhoun & Tedeschi, 2006).

It is not a new way of therapy; it is a lens that can be used with any intervention, especially

cognitive, existential, and narrative treatments.

The finding that parents of children with ASD utilize unique coping strategies including a

new, collaborative, parenting style, suggests that social workers that work with families affected

by ASD, should know and educate other clinicians about these coping strategies. This may benefit

children with ASD and their families, creating collaborative communications and partnerships

between parents and the professional community, potentially improving quality of care and

satisfaction with services provided to them.


Identifying the signs of PTG, its facilitation, expert companionship, and new ways of

coping needs to be also brought to the trauma-sensitive practice setting, where it can be useful in

working with other populations with chronic multilayered traumatic stress experiences, as PTG is

always a potential outcome of a struggle with traumatic experiences. This will provide a positive

impact on the lives of disadvantaged traumatized individuals and families and support them

alongside their journey.

The finding that professionals who work in interdisciplinary teams that service parents and

families rearing children with ASD are not aware of the kinds of potential stressors associated with

the developmental journey of children with ASD, as well as the multilayered compounding

stressors imposed on parents, and the potential negative and positive outcomes for parents during

this journey, prompts the suggestion that social workers in these practices provide

psychoeducation to teams and individual providers about the these topics. Social workers must

keep in mind and educate others that even if the parent initially presents with stress, negative

thinking and hopelessness, with time, they may exhibit the signs of any and all the domains of

PTG. Also, while the current literature suggests that for parents of children with ASD, the

diagnosis is mostly traumatic (Keenan, et al., 2010; Waizbard-Bartov et al., 2019), this study’s

finding that for several parents, the point of diagnosis was perceived as helpful and even served as

a validation for their concerns about their child long before receiving a diagnosis, implies that

social workers need to expand their understanding of experiences of parents of children with ASD

and suspend assumptions about what is or is not traumatic to them.

The finding that parents wished they had known that things would turn out okay, which

would have contributed to their journey being less impacted by ambiguous loss, stress and anxiety

about future outcomes, provides social workers with positive information that they can offer to


parents who are in earlier stages of parenting. Providing psychoeducation to parents of children

with ASD will help social workers to normalize parents’ experiences, especially in breaking down

assumptions of what “should be” expected, thus decreasing their stress and empowering parents,

as was shown by some other studies (Parta, Arun, Chava, 2015). Social workers should also

provide psychoeducation to other professionals about the potential for positive outlook later in the

process of parenthood journey.

The finding that parents were not satisfied with interventions for their children with ASD

that emphasize their child’s delays and limitations and focusing on remediating behaviors (Applied

Behavioral Analysis, physical therapy, speech and language service and occupational therapy

services), social workers should utilize modalities with children with ASD based on promoting

social skills and connection with others, and the bridging of the children’s internal world with the

world around them. This supports both the child’s positive outcome and positive outcomes for the

family. Such programs and interventions include Developmental, Individual-difference and

Relationship-based “DIRFloortime” Model (Casenhiser et al., 2015; Greenspan & Wieder, 2007),

and Relationship Development Intervention (RDI) (Gutstein, 2002; 2009).

The finding that most parents of children with ASD were not satisfied because of lack of

interventions that focus on the families or family members prompt the proposal for social workers

to utilize interventions for parents, which are available, but sometimes labeled as “alternative” or

“controversial” (Kurtz, 2008), although they are often chosen by parents themselves because of

their effectiveness. These interventions include complementary medicine, mindfulness practice,

self-regulation/ biological interventions, and psychoeducation for parents. Social workers need to

be aware that these “alternative” interventions for parents are mostly focused on self-regulation

and potentially can achieve a double benefit because by getting a handle on their own self-


regulation, parents can guide their children to self-regulate (Beer, et al., 2013; Ferraioli & Harris,

2012; Singh, et al., 2014).

The finding that families of children with ASD developed a unique “ASD family unit”

suggests that social workers should be facilitating family unit-based practices that are supported

by parents, like the Son-Rise Program (Kaufman & Kaufman, 1995), in opposed to the current

state when interventions are mostly problem-focused or individual-focused, and they address the

child’s pathology only (Dillenburger & Keenan, 2009). These family-oriented interventions may

improve the family’s functioning while improving the child’s behaviors, because as social workers

support parents, they inadvertently support the child. The finding that parents became expert

companions for their child’s development, and knew which modalities worked for their child and

which did not, suggests that for social workers who work with families raising children with ASD

to utilize this expert companion function of the parent to improve the child’s outcomes and the

family’s functioning.

Educational Services for Families with Children with ASD. That parents were

dissatisfied with services in educational settings, mostly because of poor communication between

school staff and parents, lack of education professionals’ knowledge about the IEP process and the

transition services for their children with ASD, as well as poor involvement of parents in decision

making related to their children’s educational needs and care, suggests various implications for

social workers in educational settings. Social workers should implement effective approaches in

mediating communication between school staff and parents, utilizing their knowledge about the

unique needs of children diagnosed with ASD and their families. Social workers in schools and

higher education should assist parents with obtaining specialized and tailored services for their


children and with advocating for changing policies and laws that do not serve the ASD-affected

population well.

Social workers should serve as advocates and provide support for parents and their children

with ASD in improving existing services for children with ASD, as the IEP process can be lengthy,

vague and stressful. The finding that the IEP process is not functional and mostly bureaucratic,

and the complaints of parents that professionals who are involved in it are not equipped to

powerfully collaborate and deliver on addressing concerns regarding their child’s development

and behaviors prompts the suggestion that social workers should initiate mandatory

interdisciplinary IEP trainings, oversight teams, and task force, aiming to address each child’s

individual needs and their unique set of social and sensory developmental issues. Other actions

social workers can take include involving parents in the IEP process, providing guidance for

parents regarding the paperwork, advocacy during the IEP process and follow up before and after

the IEP meetings; providing education for parents about their child’s goals and the variety of

eligible accommodations the child can benefit from.

Implications for Social Work Policy

None of the recommendations developed since the mid-2000’s by task forces and networks

at the federal and state levels to address the issues of ASD community (ADDM; CDC, 2019a;

NYS Interagency Task Force on Autism; Report to Congress 2016: high-priority evidence gaps

for clinical preventive services, and others) are implemented and required nationwide. E.g., 2020

Pennsylvania Autism Task Force Report lists “five major solutions that cut across all of the [ASD-

related policy] themes, and would dramatically improve the organization, financing and delivery

of services to people with autism in Pennsylvania” (Executive Summary, para 5), but nothing yet

had been acted upon. Some of their suggestions are valuable, and possibly they need to be brought


to inter-agency discussion nationally, such as making services for adults with ASD an entitlement,

coordination of funding across agencies based on policy decisions, “creating incentives to ensure

that different care plans were tied together into a single, coherent plan” (Theme Four, Solutions,

para 1).

It is important to establish policies related to the promotion of psychoeducation in social

work in education and clinical settings. Such policies can have a positive impact on parents’ life

by decreasing parental stress related to stigma and the unknown, which negatively impacts the

well-being of parents and their mental health (Papadopoulos et al., 2019). Available programs like

“Learn the signs. Act early” that are effective in improving developmental surveillance by

increasing parents’ awareness of the developmental milestones (Gadomski, et al., 2018) are widely

under-utilized (Chhatwani & Sivaraman, 2016), possibly because this program is only web based

and its accessibility depends on one’s fair technological literacy. This prompts the suggestion that

psychoeducation available to parents and families should be promoted by the early intervention

and pediatric providers, in addition to referring parents to the web-based programs, and that there

is a need of developing new programs about ASD awareness that are more accessible for all

parents, even if they are technically or linguistically challenged.

The finding that most parents reported that medical and para-medical professionals, and

educators who work with children with ASD and their families lack substantial knowledge about

day-to-day issues that families with children with ASD face prompt the social workers to establish

policies that include proactive care initiatives to address these issues. These initiatives could

include mandating nationwide training and certifications of medical and mental healthcare

professionals and educators, and focus on accountability and effective interventions that would


address sensory, behavioral, and relational challenges, as well as home-based services for the child

and the family.

The finding that parents were not satisfied with ASD service provision in school and

medical settings because their child’s needs were not adequately met or addressed, suggests that

social workers need to get involved in both the development of new policies and strategies to

improve the utilization of existing services for families of children with ASD. The finding that

parents were dissatisfied with not being engaged by professionals in interventions, decision

making, and they were not targeted for any family-based interventions prompt the suggestion that

social workers should advocate for policies mandating comprehensive services for parents raising

children with ASD and their children as one ASD family unit, to address the needs of the whole

family. The policies should be implemented to include the recommendation of ASD task force

addressing competency around factors/stressors/effective interventions for families of children

with ASD, as well as policies regarding mandatory services for children with ASD, their parents,

and immediate family, as they play integral role in integrating their children with ASD into the

general community. E.g., one of the forms of such mandatory service offerings could be the respite

care, which is known to improve mental and physical functioning of parents, even if given for one

hour a day (Dyches et al., 2016). This is supported by high effectiveness of respite care reported

in other settings, such as caretakers for people with dementia (Vandepitte et al., 2016).

Social workers should educate the professionals in various educational and medical settings

about existing disability laws that are not faithfully carried out in these settings. For example,

under the Individuals with Disability Education Act (IDEA) (P.L. 105-117), the Individualized

Education Plan (IEP) is established and is most significant for children with ASD because the

services provided must address the unique needs of a child and not place them in a program that


is already established for all children with special needs. Despite the law stating the rules of

provisions of service, the gap between the rules and their implementation is significant, as

evidenced by research (National Research Council, 2001) and by the findings of this study;

wherein parents engaged in lawsuits and legal avenues to obtain rightful education and services

for their child. In addition to the IDEA, the Americans with Disabilities Act (P.L. 101-336) and

section 504 of the Rehabilitation Act (29 U.S.C., Sec. 794) are supposed to protect against

discrimination of individuals with ASD and other disabilities.

The finding that higher level of parents’ stress and despair was related to discrimination of

their children in school setting (use of restrains and isolation) suggests that social workers in each

school setting take it upon themselves to ensure that the federal laws are translating into each

school’s rules of operation in regards to children with ASD and other disabilities. A system of

accountability, and checks and balances in schools and clinical settings must be implemented on

all levels of staff, from administrative to clinical and supportive staff, so that the IDEA becomes a

critical component of the professional hands-on procedures rather than conceptual in nature.

The finding that families with children with ASD have experienced significant difficulties

accessing existing services suggest that social workers should advocate for policies promoting

justice and equality around access to care, such as the establishment of a Medicaid Waiver that

offer the flexibility to provide services for vulnerable populations which are outside the traditional

scope of care. Another example of such policies is targeting the quality of care for people with

ASD by offering incentives for providers who deliver high quality care. One of the components of

this model includes contracts with providers based on performance, access to and quality of care,

and patient satisfaction (PA Bureau of Supports for Autism and Special Populations, 2020). States


like California and Indiana had implemented such programs on a trial basis, which can serve as a

model for others and for national implementation.

Further, the finding that access to care for families of children with ASD is limited also

because of medical providers’ lack awareness of existence of mental health issues, like depression,

anxiety, adjustment disorders, and isolation, specifically related to young adult stage of life of

people with ASD (Anderson, Lupfer & Shattuck, 2018; Weiss, et al., 2018; Yirmiya & Shaked,

2005) suggests implementation of neuro-psycho-educational training for medical professionals

about mental health issues and appropriate mental health screenings and care for children and

young adults with ASD.

The finding that families of children with ASD, who transitioned from teenage years to

young adults and further on, lack support in transition services that would involve life beyond

childhood and secondary education, including employment, suggests the need for improvement of

transition services, so parents understand what is to come, as well as services for emerging adults

with ASD related to adaptive living skills (cleaning, organizing, etc.) and other daily living

activities, like driving, travel, dating, educational, vocational and financial planning, and

community services that provide connection and networking of young adults with ASD and larger

communities. Other recommendations for policies include unifying school transition services

statewide and even nationwide, and having a specific body within each school district responsible

for transition services. Transition services in schools would engage parents of children with ASD

to provide them with support, clarity for the future and resources available to them after their

children graduate from school. The benefit of the nationwide services rather than locally

appropriated services would be in higher probability of funding available and allocated yearly

based on the rate of ASD in each state.


Implications for Social Work Education

The findings of this study offer implications for social work education related to BSW,

MSW curricula and continuing education, as well as for the modes of teaching.

Implications for BSW and MSW Social Work Curricula. The finding that professionals

who serve children with ASD and their families are lacking knowledge about the ASD world

prompts the proposal to include content related to working with these children and their families,

which is currently missing from the curricula. Relevant courses should include knowledge about

the multilayered and compounded stress experiences of parents to children with ASD, with

negative and positive outcomes, as well as unique coping strategies, such as new parenting styles,

employed by parents of children with ASD. Modules should focus on ASD diagnostic process,

symptomatology and mental health comorbidities, ASD as a dynamic life experience rather than a

set of “neurodevelopmental issues,” and its effects on the whole family’s functioning will generate

practitioners with a high level of awareness of and the tools for dealing with ASD and other

neurodevelopmental conditions from a family perspective rather than from a diagnosis related

pathology perspective. The findings that the parents of children with ASD developed unique

coping strategies (biology-based coping and self-regulation) as well as a new, “collaborative,”

parenting style prompt the inclusion of this knowledge in MSW core curricula related to the ASD

world.

Because psychoeducation of parents is key to their empowerment and successful coping

(Anderson, Gerard, et al, 1980; Bäuml et al., 2006), as well as it serves as prevention of mental

health issues (Colom, 2007), BSW and MSW curricula should include alternative modes of

learning, such as reading “non-academic” books (e.g., by Oliver Sacks and Temple Grandin) and


watching videos by these and other outspoken advocates for the ASD community, to understand

it from inside out.

Other findings of this study related to utilizing the trauma lens to events that happen in the

lives of parents of children with ASD support prior studies about teaching trauma to social workers

(Marlowe & Adamson, 2011) and prompt to include this knowledge in the core MSW curriculum,

which will benefit understanding of the trauma-informed practice in populations with multiple

adversities. This will continue to evolve the MSW curricula to be more informing about various

presentations of trauma in diverse populations, and specifically in families of children with ASD

and other developmental disorders. In particular, the findings that multiple traumatic event(s)

happen in the lives of parents of children with ASD at various stages of parenthood support

including in the MSW curriculum this new knowledge that will serve as a foundation for further

deeper examination and empathic work.

The findings that parents of children with ASD reported benefits from their parenting

experience, despite the adversity, prompts including learning modules on PTG, especially as it

applies to parents of children with ASD, in the MSW curricula. This will provide students with a

new understanding about how PTG functions in general as well as within the parenthood journey

of parents of children with ASD, through the Comprehensive PTG Model schema. In addition, the

findings that – because of multiple traumatic/seismic events of a parenthood journey that each start

the PTG process, producing the “budding”/ “cascading” PTG phenomenon in this population,

prompt to include in the MSW curricula the study of PTG in general and PTG in parents of children

with ASD – as the representatives of many other populations with significant adversities that are

not seen by society, and even the professionals, as such. MSW graduates will also benefit from

enriching the MSW curriculum with the knowledge about expert companionship as a part of


practice with any populations that experience trauma and PTG. Adding the hands-on mode of

teaching through placement of MSW students into interdisciplinary teams that deal with children

with ASD and their families (ASD family units), and with trauma, will prepare those who complete

such MSW curricula for working with this population effectively.

Based on findings in this study about expression of duality of trauma and PTG in parents

of children with ASD, the MSW curricula for trauma-informed practice will benefit from training

in awareness about various expressions of trauma and PTG, fostering PTG in diverse populations,

as well as training in expert companionship, and neuro-psychoeducation about trauma and its

expression.

Implications for Continuing Education. All of the implications mentioned for MSW

educational curricula, apply to post-MSW continuing education, mostly because even seasoned

professionals do not have the particular expertise in this specific population and the specific topics

examined, as their own MSW core curriculum did not include these topics. As the implementation

of the proposed MSW curricula ensues and MSW graduates acquire knowledge about the ASD

world, trauma and PTG in various diverse populations, including parents of children with ASD,

the continuing education curriculum could be then concentrating on more advanced clinical

practice issues.

In addition, the post-MSW education should focus on science-based explanations related

to ASD diagnosis, neuropsychoeducation, neurobiology/ neuroscience, and the topics of

attachment and self-regulation. This will aid professionals in the field to better understand the

biology/ mindfulness-based interventions, as well as the biology-based /self-regulation parental

coping strategies that have a positive effect on the whole family.


The finding that although some parents expressed deep sadness and loss associated with

their narratives, yet self-selected to participate in this study, has an implication for post- MSW

educational curricula to include the training about the duality of PTG too, as reaching PTG does

not always associate with happy feelings. This also will contribute to breaking down the

assumptions that many practitioners in clinical practice express during conferences and workshops

about how coping and PTG is supposed to look. Knowing that PTG does not have to look like a

“happy place” can support training practitioners who work with parents of children with ASD to

identify PTG, even when it does not look or sound how they might expect, and further foster the

PTG in their patients/clients.

Implications for Social Work Research

The lack of diversity in the sample of this study prompts important suggestions for future

research to address. While this study’s findings are a significant contribution, they are a benefit to

the limited population sample that has been studied (Allmark, 2004; Cohen et al., 2001), and

cannot be extrapolated to the experience of all parents of children with ASD from diverse

backgrounds. To gain a comprehensive understanding and capture relevant voices, all future

research in the areas of inquiry noted in this section should utilize critical case (criterion) sampling

(Patton, 2001, p. 238), deliberately seeking out and including a group/case which is particularly

relevant by certain characteristic/s/criteria, which in future research would be parents of children

with ASD from diverse backgrounds and life circumstances. Additionally, while snowball

sampling can be effective and is widely used, that recruited participants often come from the same

social group requires that researchers utilize a complementary approach to recruitment to more

traditional approaches, such as recruiting from public places (Browne & Russell, 2003), and

utilizing advisors or trusted community gatekeepers to invite people whose voices are relevant and


needed. Future researchers should take care to also minimize barriers to participation by creating

recruitment materials that include ethnic and cultural visuals that resonate with the whole

population, use appropriate language and consider the potential participant’s literacy levels and

learning styles. Researchers can also utilize cultural advisors and community gatekeepers to

engage as advisors in study planning, recruitment and implementation (National Resource Center

for Healthy Marriage and Families, 2015; Helms, et al., 2015).

That the researcher was not part of the specific population being studied presents a valuable

lesson that there is possibility to research populations that one does not have membership

personally. While the researcher may bring with them clinical experience and bias associated with

working professionally with a population, the researcher can be uniquely positioned to be aware

of this potential professional partiality and provide a clear space for participants’ narratives to be

shared without a subjective view grounded in any personal experiences.

The finding that the parents of children with ASD experienced stresses as multilayered and

compounding were not adequately researched until now. Further research related to the

compounding quality of stress and all the components of it (e.g., stress proliferation, allostatic

stress load, and circular causality), as well as the relationship among the stressors, will aid in better

understanding the experiences of parents of children with ASD, as well as parents of children with

other developmental conditions, and other multiple populations with chronic adversities (LeBlanc,

et al, 2015). This finding of parental stress reaching the level of traumatic experience has an

implication for further research focusing on which components of compounding nature make the

experience more or less traumatic, and examine the mechanisms of prevention of trauma (Wu, et

al, 2011).


The finding of the multilayered stress experiences of parents of children with ASD, which

involves the construct of circularity as well as the finding of the “cascading”/ “budding” nature of

PTG in this population prompt research investigating this phenomenon further, as well as if this

circular causality plays a role also in potentiation of PTG in parents of children with ASD and

other populations that experience medical or social adversity.

The finding that the experiences of parents of children with ASD brought to the surface a

topic of duality of trauma, which includes the benefits and PTG that improve parental well being

and positive meaning making, prompts to suggest that further research should expand on this

study’s focus on retrospective experiences, while utilizing larger study samples, including

participants from various cultures, ethnicities, religions, countries, as well as speaking various

languages, utilizing various healthcare practices, and applying quantitative measures, such as the

Posttraumatic Growth Inventory (PTGI) (Tedeschi & Calhoun, 1996), to examine which factors

possibly promote more or less PTG process.

In addition, since ASD has some genetic components and the findings that some parents of

children with ASD had diagnosed or undiagnosed ASD condition, further research should include

studying differences in meaning making, benefit finding, PTG process and PTG manifestations in

parents on the ASD spectrum and those who are not. Further research should also be done on the

PTG process and its manifestation in siblings of children and young adults with diagnosis of ASD

too. This will aid in better understanding of the experiences of ASD-affected populations of all

ages and life stages.

The finding of special ways of coping used by parents of children with ASD, which include

collaborative parenting style and “ASD family unit” prompts suggestion that research of these

phenomena should include larger groups of parents from various cultural backgrounds, as well as


focusing on special ways of coping in other populations with multiple adversities. In addition, it

suggests that future research on coping looks into the parent’s description of their evolution of

coping over time. The finding of proposed ASD family unit operation is little known to the

professional communities that provide services for parents of children with ASD, which prompts

further research focusing on experiences of all members of the family with a child diagnosed with

ASD, and on experiences of the family as a whole. Finally, the finding of a new collaborative

parenting style may also contribute to the existing research in the field of trauma informed

parenting (Murray, et al., 2019; Johnson, et al., 2018) and specifically as it relates to trauma

informed parenting of children with ASD, which there is currently limited research on (Dababnah,

2018).

The finding regarding specific personality traits of parents of children with ASD and their

contribution to the multilayered experience of parenthood suggest that future research should

explore personality traits (e.g., self-identified extraversion) as factors contributing to parental

experience of stress and/or benefit finding and PTG. Further research should also explore other

factors that affect the meaning-making process and contribute to traumatic experiences in parents

of children with ASD, as it was done for other populations with adversities, e.g., patients with

cancer (Chan et al., 2018).

Although prior studies that focused on siblings of children, adolescents and adults with

ASD and they discovered the positive and negative experiences of the adults siblings (Moss, et al.,

2019), relationship between severity of behavior problems of ASD affected siblings on shared

activities and sibling relationships (Orsmond, et al., 2009), as well as factors affecting the

wellbeing of siblings during their lifespan (Orsmond & Seltzer, 2007), this study’s findings that

parents perceived that typical siblings experienced stress, lack of attention, pressure to become a


caregiver, and neglect of their own needs suggests implications for further research. Future

qualitative research should focus on these siblings’ perceived and unmet needs and best ways to

support them, providing them with a voice about their experiences, including their journey of

adjustment and factors moderating it.

The finding that the parental experiences of rearing both children with and without ASD

diagnosis caused additional stresses to parents prompts the suggestion that further research focuses

on giving light to the ways in which parents make decisions about parenting, the roles they take

on as parents with each child, and what parents need support in as they navigate parenting children

with variable unique needs.

While this study focused on experiences of parents of young adult children with ASD,

further research should be focusing on the retrospective insights of parents of older adult children

with ASD, which might provide even more insight about the benefits and growth they have

experienced, as well as the various ways they navigated life transition challenges unique to older

children, such as dating, travel, vocation, financial planning and independence.

The findings that four families (out of 16) identifying one of the parents having a diagnosis

or symptoms of ASD themselves point to the need to explore more the experiences and the needs

of parents with ASD. This is really an unchartered territory. Research should also explore the

experiences parents of children with ASD who have ASD themselves, and their family dynamics.

The finding that parents reported lack of transition services (from school age into

adulthood) for their children with ASD prompt further research into what works and what does

not, in terms of this transition. Also, while people with ASD can gain employment and become

successful (Hendricks, 2010), research in this area is limited. Thus, further research should also

focus on factors that support successful life and careers of people with ASD.


The finding that parents’ own perspectives on ASD and perspectives of others had

impacted their meaning making of potential child outcomes and their coping, suggests the need to

further study which factors contribute to a parent's understanding and meaning making of ASD,

and which coping strategies are effective and which are not. Further research should also expand

on the findings of this study regarding biology focused coping strategies employed by parents of

children with ASD that they found effective, such as mindfulness practices, meditation, physical

activity, and self-regulation. Further research in this area should explore the idea that parents of

children with ASD that utilize these practices are able to self-regulate, and “lend” their experience

of much needed self-regulation (as lending the body ego) to their children with ASD too.

Exploration of this idea through further research will benefit to construct directions for practice

with parents of children with ASD, as well as parents of children with other developmental

disorders that need to learn self-regulation.

The finding that parents of children with ASD experienced their relationships with

professionals as strenuous and not trusting, prompts further research regarding the elements of

effective communication (e.g., empathic listening, attending to parents’ “gut feelings” about

child’s symptoms, etc.) between medical and other professionals and parents/ families of children

with ASD who work in clinical settings, direct practice or team environment. Also, the finding of

this study about the manner the practitioners engage with the parents of children with ASD, and

how this affects the parents’ experience, suggest that future research focuses deeper on

understanding the qualities in a practitioner that are associated with positive experience for parents.

The finding that parents of children with ASD diagnosis were not satisfied with the

interventions offered to their families prompts the suggestion for further research related to

effective interventions offered to children with ASD and their families. Future research in this area


should utilize a larger sample of families and more qualitative research methods with longitudinal

and retrospective explorations.

The findings that parents were devastated when they found that their child has ASD –

mostly because of their references to the stigmatized and pathologized portrayal of people with

ASD on TV and cinema prompt the suggestion for further research about the impact of media on

experiences of families of children with ASD, as well as about community reaction and attitudes

towards this population group. This type of research could aid in better understanding of how

media/ TV/ cinema could support the general population to understand the many faces of ASD and

the unique experiences of parents of children with ASD and their families, negative and positive,

and even growth.

Finally, regarding the finding of the duality of reported family and community response –

stigmatization and distancing on one hand and support on the other – prompts an important

question for future research related to factors playing a role in this dual response.


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APPENDICES

Appendix A

Announcing a Research Project Retrospectively Exploring the Experiences of

PARENTS of YOUNG-ADULTS

DIAGNOSED with AUTISM SPECTRUM DISORDER

If you are a parent of a young adult diagnosed with Autism Spectrum Disorder, who is

currently between the ages of 18-26, and you feel that you have found benefits or perceived

growth through your parenting experience, please consider taking part in a study to help

enhance the understanding of your experience. Greater understanding of your experience

might help to develop supports and programs to assist parents as they navigate all kinds of

experiences, such as adjusting to the diagnosis and raising their children.

My name is Victoria Grinman. I am a social worker conducting this research as a requirement for

a Doctorate in Social Work at Adelphi University. If you take part in this study, I will meet with

you at a time and place convenient to you. Participation involves one interview of one to two hours,


and a review of the transcribed interview, once it is completed. All information will be kept

confidential within the limits allowed by the law.

You are eligible to participate in this study if you:

a) Have a child who was diagnosed with

Autism Spectrum Disorder, Pervasive Developmental Disorder-NOS,

and/or Asperger’s Syndrome;

b) Your child is 18-26 years old.

If you’d like to participate in this study or would like more information, please email me at

[email protected] or call at (646) 522-0628.

______________________________________________________________________________

Appendix B

Interview Guide

1. Please tell me a little about yourself.

Sample probe: Please elaborate on your background.

2. Please tell me a little about your family.

Sample probes:How many people are in your family? Who lives in your home? Who

used to live in your home?

Tell me a little bit more about your child/children

Tell a little bit about your role, duties or responsibilities within the family

3. Please describe where you have lived for the last few years.

4. Please tell me about the birth of your child.

Sample probe: Please describe any hopes you had about your child/ your life with your

child.


5. Please tell me what your life was like prior to your child’s diagnosis.

Sample probes: (If the parent prompted the evaluation) Please describe what you noticed

happening (specific behaviors, lacking eye contact, etc.) that prompted you to get your

child evaluated for ASD. Please describe your initial reactions or thoughts when you

noticed these behaviors.

6. Please tell me what kind of information you had about autism prior to the birth of your

child.

7. Please tell me about the diagnosis of your child with ASD.

Possible probes: Please describe how, and from whom, you received your child’s

diagnosis; at what age was your child diagnosed with ASD?

How long did you wait to receive an official diagnosis?

8. Please tell me about the period of time after you found out your child was diagnosed with

ASD.

(Probe) Tell me more and elaborate on what was “easy” during this time.

(Probe) Tell me more about what was “challenging” during this time.

9. Please tell me what your life was during the first few months after receiving your child’s

diagnosis.

(Probe) Who did you share the information with?

(Probe) What were some reactions from those you shared the information with?

(Probe) How did these reactions impact you? Please provide specific examples.

(Probe) Please tell me more about how it impacted your life overall and in different areas

of your life.

(Probe) Please tell me more about what was challenging.


(Probe) What was not as difficult as you might have thought?

(Probe) What was surprising to you, if anything?

(Probe) What is life like now?

10. How has your child’s diagnosis affect your family?

(Probe) (If respondent has a spouse/partner) What impact has it had on your marriage?

(Probe) (If respondent has other children) What impact has it had on your other

child(ren)?

11. Please describe the way in which you chose to cope with the diagnosis of your child

during the first year after the diagnosis?

12. How have your coping strategies changed over time? (At point of diagnosis, after the

diagnosis, elementary school years, middle school years, high school years, college, etc.)

13. During this period of time that your child was diagnosed, who or what was helpful to

you?

(Probe) Please describe the kind of emotional support you had when raising your child.

(Probe) Please describe the kind of financial support you had when raising your child.

(Probe) Please describe the kind of social support you had when raising your child.

(Probe) What kinds of thoughts have you had, if any, that were helpful to you during this

time?

(Probe) How do you feel you’ve dealt with challenges as time passed?

14. Please describe the role of religion and/or spirituality in your life before and after

receiving your child’s diagnosis.

15. Can you share how your later feelings about parenting your child?

(Probe) Have you been aware of any benefits gained from parenting your child?


(Probe) Can you tell me about any ways you feel you’ve experienced growth?

16. If you could go back in time, what would you have liked to know that you didn’t know

during your experience?

_____________________________________________________________________________`

ADELPHI UNIVERSITY

SCHOOL OF SOCIAL WORK

PH.D. PROGRAM

Appendix C

Title of Project: A Retrospective Look at the Lived Experiences of Parents of Children

Diagnosed with Autism Spectrum Disorder

Principal Investigator: Victoria Grinman, MSW, LCSW-R

Address: Adelphi University School of Social Work

1 South Avenue

Garden City, NY 11530

Phone: (646) 522-0628

Email: [email protected]

Faculty Advisor: Roni Berger, PhD, LCSW

Research Consent Form

As part of my study as a doctoral candidate at Adelphi University’s School of Social Work, I am

conducting a research to learn about the experiences of parents whose children were diagnosed

with Autism Spectrum Disorder (ASD) and who feel that they have grown and benefited from this


experience. You will be asked to participate in one in-depth interview that will take approximately

one to two hours. You will be invited to discuss your experience of the diagnosis of your child

with ASD and parenting your child over the years. After completion, you will have the opportunity

to review the transcribed interview. With your permission, the interview will be audio-recorded to

ensure accuracy of reporting. I will transcribe the audio files, and only I will have access to their

contents. A coding system will be used to identify participants, and only I will have access to the

code. All documents with your name will be kept in a separate file, and you will have the

opportunity to choose a pseudonym (code name) for your story. All information will be kept

strictly confidential to the extent permitted by law. There is one exception to confidentiality:

should you tell me that you are considering harming yourself or others, or are harming yourself or

others, I am mandated to notify the appropriate law enforcement agencies.

There are no known risks involving participation in this research study. However, the issues to be

discussed are sensitive in nature and may raise painful memories. You will be able to end the

interview at any point and decline to answer any question that makes you feel uncomfortable.

Should you become upset during the interview, I will provide you with a referral to a counselor at

no cost to you. Your signature below indicates that you understand all the requirements of taking

part in this study. Participation is voluntary.

By taking part in this research study, your input will contribute to the understanding of the

experience and needs of parents of children diagnosed with ASD, and how they can be best

supported by professionals in finding growing through their parenting experiences. Your time and

participation is greatly appreciated.


If you have any questions about this research, I can be reached at (646) 522-0628. If you have any

questions, comments or concerns, please contact my advisor, Dr. Roni Berger at

[email protected] at (516) 877-4365.

This research has been reviewed and approved by the Adelphi University Institutional Review

Board. If you have any questions, concerns or comments, please contact the IRB chair, Dr.

Carolyn Springer 516-877-4753; [email protected]

Victoria Grinman, MSW, LCSW-R

Adelphi University – School of Social Work

Participant’s Name (please print) ____________________________________________

Date___________________________________________________________________

Participant’s Signature_____________________________________________________

Consent for Audio Recording

My participation in this research project will be audio recorded. I consent to the recording of my

voice.

Participant’s Signature and Date______________________________________________

Addendum

The proposal for this study was born out of a passion for the Autism (ASD) community as

well as the commitment to educating providers and consumers of mental health services about

posttraumatic growth (PTG). The interest in this combined topic grew out of two separate life


experiences that came together as an area of research interest while I was completing my doctoral

coursework.

When I was in graduate school, my knowledge of ASD was limited to the knowledge I

gained from some textbooks and lectures. I admittedly had a pathological understanding of the

diagnosis as well as the limited understanding of treatment options for individuals living with the

diagnosis. From a Western cultural perspective, I understood that ASD was equal to a lifetime of

challenges for children and parents, filled with social ineptness, disconnection, odd behaviors and

many years of uncertainty with poor prognosis for change.

During my graduate career, I attended a two-day workshop in which I was serendipitously

introduced to a community of parents of children with ASD who displayed a different perspective

of ASD from what I was accustomed to; they spoke about loving their child(ren) with ASD,

describing how their lives have been forever positively changed and shifted due to having their

child in their lives. One by one, mothers, fathers and grandparents shared their positive views,

hopes and spoke of their children as “gifts”. I was stunned by what I experienced and became

evermore interested in the approaches these parents were taking to treatment and support, and how

it compared to the other parents I had met over the years who viewed their children as much

different.

As I progressed in my career and embarked on my doctoral studies, my interest in

supporting positive experiences in this population of parents blossomed. I trained and practiced

with methodologies that supported the interpersonal connectedness and joy of parents and their

children with ASD rather than utilizing approaching that focus on specific behavioral changes.

Years later, I was introduced to the PTG phenomenon by my current dissertation advisor

and then professor, Dr. Roni Berger. The connection was immediately sparked as I learned more


about the concept: growth and benefit finding that is experienced by an individual or group, not

because of the trauma they experienced, but due to the struggle through which they go through

after the trauma. Among the many aspects of PTG that interested me, I felt the strengths based

perspective of this experience spoke loudly to my clients. While the clients I worked with coped

with anxiety, depression, helplessness and fear, the very fact that they were struggling with these

challenges spoke to their potential for experiencing PTG later on. PTG gave voice to the inherent

strengths in the experience of struggle, and turned what was normally a stigmatizing experience

into one of great courage.

Much of the literature on the experiences of parents of children with ASD is saturated with

negative aspects of the experience and less focus on the positive experiences of having children

with ASD. I am interested in exploring the parenthood experiences of parents of young adult

children with ASD who self-identify as having experienced benefits and growth, so I can shed

light to the whole spectrum of experiences that can manifest. My hopes are to help fill a small gap

in the literature and perhaps (in the not so distant future) continue research that might add to the

understanding of various treatments and approaches that might support the facilitation of PTG in

this community.

Documents

a retrospective exploration of the experience