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An Interpretative Phenomenological Analysis of Parents’ Understanding of their Daughters’ Autism Spectrum
ConditionBy
Hannah Senior
Submitted in partial fulfilment of the degree of Doctor of Psychology (Clinical Psychology)
School of Psychology
Faculty of Health and Medical Sciences
University of Surrey
April 2019
© Hannah Senior 2019
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Abstract
Research into the prevalence of Autism Spectrum Conditions (ASC) often reports males as
being more frequently diagnosed compared with females. Many researchers in the field
suggest females may be incorrectly diagnosed or missed altogether due to gender differences
in their ASC symptomology and expression. Parents are fundamental in acknowledging
difficulties and overseeing the diagnosis process, which often occurs at a later stage in girls’
development compared to boys. This article reviews the current literature on parents’
experiences of having a daughter with ASC. A systematic search was conducted which
resulted in nine articles being identified as appropriate for the review, based on inclusion and
exclusion criteria. Many articles highlighted parents’ difficulties in obtaining a diagnosis for
their daughter and accessing services. There were inconsistencies in parents’ understanding
of the girls’ social difficulties and how successfully they were able to hide them. Problems in
maintaining friendships, vulnerability, self-care issues and how these impacted self-esteem
were also common themes. Typically, parents described a process similar to grief involving a
degree of adaptation to the parent-daughter relationship following an ASC diagnosis.
Limitations in the articles were acknowledged and discussed within the context of currently
limited research in this area. A recommendation is made for further exploratory qualitative
research which adds to and advances the current research, particularly to assist parents and
services in the early identification of females with ASC to inform more timely and
appropriate diagnoses and provide more appropriate support.
Key words: Autism, Autism Spectrum Condition, High Functioning, Females, Girls, Gender,
Parents.
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Acknowledgements
I would like to thank all of the course team for inspiring and encouraging me during clinical
training. I would like to thank my research supervisors, Dr Kate Gleeson and Dr Emma
Williams for their continued expertise, assistance and support. I would also like to thank my
fellow trainee, Amber Taylor, who has been helpful in the joint aspects of our research
projects and a great emotional support. Thank you to my clinical tutor, Dr Catherine Huckle
and all of my placement supervisors throughout the three years of clinical placements, who
have helped me to development and gain confidence in my skills as a Clinical Psychologist.
Training has been challenging, stressful, enriching and brilliant. I feel very privileged to be a
part of my cohort; thank you to everyone who has been a part of this amazing journey.
Finally, thank you to my amazing friends and family for helping me through the difficult
times. I could not have done this without you.
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Contents
Part 1: MRP Empirical Paper……………………………………………………...4
Abstract…………………………………………………………………….....5
Introduction…………………………………………………………………...6
Method………………………………………………………………………12
Findings……………………………………………………………………..20
Discussion…………………………………………………………………...32
References…………………………………………………………………...39
Empirical Paper Appendices………………………………………………...45
Part 2: MRP Literature Review...………………………………………………...75
Abstract……………………………………………………………………...76
Introduction………………………………………………………………… 77
Method………………………………………………………………………84
Findings……………………………………………………………………..91
Discussion………………………………………………………………….106
References………………………………………………………………… 113
Part 3: Clinical Experience on Training………………………………………...120
Part 4: Table of Assessments Completed on Training …………………….......123
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Part 1:
Major Research Project Empirical Paper
An Interpretative Phenomenological Analysis of Parents’ Understanding of their
Daughters’ Autism Spectrum Condition
Word count: 8811
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Abstract
Prevalence studies found a higher incidence of males with Autism Spectrum Conditions
(ASC) compared to females (Chakrabarti & Fombonne, 2001; Fombonne, 2005). It is unclear
whether this is due to a biological difference, a difference in symptomology or a difference in
how behaviour is interpreted due to societal expectations. Parents are fundamental in
acknowledging early signs and overseeing the diagnosis process, which generally occurs later
for girls compared to boys. A review of the literature exploring parental experiences
highlighted difficulties in gaining a diagnosis but did not assess the development of
understanding over time. Six parents of adolescent girls who had a diagnosis of High-
Functioning ASC were interviewed in line with the research question about the development
of parents’ understanding of having a daughter with ASC over time. The transcripts were
analysed using Interpretative Phenomenological Analysis (IPA). Three superordinate themes
were found: Firstly, “Parenting Journey – from a position of powerlessness to being an expert
by experience”. Secondly, “Social interaction is more difficult to navigate for girls”. Lastly,
“Delayed diagnosis affected their sense of self”. Diagnoses given during adolescence were
perceived to negatively impact on the girls’ ability to integrate ASC into their identity.
Clinical implications were discussed in terms of services becoming more able to recognise
girls via increased awareness and training, including implementation of female specific
screening tools. It should include working collaboratively with parents to ensure their self-
efficacy is maintained. Future research should focus on gaining fathers’ insights and
comparing parent-daughter dyads in order to gain further understanding in this area.
Key words: Autism, ASC, Diagnosis, Females, Girls, Gender, High-Functioning
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Introduction
There has been a recent surge in research focusing on females with the lifelong,
neurodevelopmental condition Autism Spectrum Disorder (ASD) (Cridland, Jones, Caputi &
Magee, 2014; Bargiela, Steward & Mandy, 2016; Rabitte, Prendeville & Kinsella, 2017).
ASD is characterised by difficulties in social interaction and restrictive or repetitive
behaviours (American Psychiatric Association, 2013). Historically, studies estimated that
about four times the number of males were diagnosed with ASD, also known as Autism
Spectrum Condition (ASC)1, compared with females (Chakrabarti & Fombonne, 2001;
Fombonne, 2005; Rivet & Matson, 2011). The gender difference in prevalence rates reduced
to 2:1 when individuals also had an intellectual disability (Fombonne, 2005). Evidence
suggests that females without an intellectual disability are diagnosed with ASC significantly
later than males (Begeer et al., 2013). The origin of gender differences in prevalence rates
and the timing of diagnosis have been debated by many researchers. Some researchers
propose there is a biological element to males being diagnosed more than females (Baron-
Cohen, 2002; Baron-Cohen, 2009), while others propose a difference in presentation, social
expectations and cultural context for girls which makes them more difficult to diagnose
appropriately (Rivet & Matson, 2011; Howlin & Moss, 2012).
Possible explanations for the gender difference
Autism was first introduced as a clinical diagnosis by Kanner (1943) and Asperger (1944),
who focused on small groups of predominantly male children. A higher number of males
have been identified since autism’s initial identification by Kanner (1943). The higher
prevalence of males based on criteria of male symptomology and a neglect for female
1 For the purposes of this study, the author has predominantly used the term Autism Spectrum Condition (ASC), as this is considered to be a less pathologising term preferred by members of the community (Bargiela, Stewart & Mandy, 2016).
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presentation has led to a focus on males in research. A male bias in the clinic and in research
may, in turn, have informed the development of male-oriented theories, such as the ‘Extreme
Male Brain Theory’ (Baron-Cohen, 2002). The ‘Extreme Male Brain Theory’ stated that
people with ASC were highly systemising and less empathising, therefore making them
cognitively more similar to males (Baron-Cohen, 2002). Supporting research used brain
imaging to consider the systemising and empathising parts of the brain, concluding that
people with ASC had larger brain areas related to systemising compared to neuro-typical
people of either gender (Baron-Cohen, 2009). This has led to notions of ASC being a ‘male
disorder’, causing parents, educators and even clinicians to be less likely to consider girls and
women as having ASC (Little, Wallisch, Salley & Jamison, 2017). Hiller, Young and Weber
(2014) found that teachers reported fewer concerns about girls than boys, including concerns
about social skills and externalising behaviours, e.g. physical aggression. This is problematic
for the early identification of girls as it suggests that parents and professionals would be
likely to consider alternative diagnoses before ASC.
Females are less likely to be diagnosed using current diagnostic criteria
The focus on males in the progression of theory and research has contributed to the
development of diagnostic criteria and assessment tools used to diagnose ASC. Hiller, Young
and Weber (2014) found that when using the Diagnostic and Statistical Manual of Mental
Disorders, Fourth Edition, Text Revision (DSM-IV-TR) or Diagnostic and Statistical Manual
of Mental Disorders, Fifth Edition (DSM-5), there were differences in how girls and boys met
criteria. Girls were more likely to maintain reciprocal conversation, integrate verbal and non-
verbal behaviours and initiate, but not sustain, friendships. Girls also had less restricted
interests compared with boys.
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Diagnostic instruments have predominantly been developed on male samples, meaning they
lack sensitivity to the female phenotype (Lai & Baron-Cohen, 2015; Haney, 2016). Research
has found that girls were less likely to meet diagnostic criteria for ASC in the absence of
additional behavioural or intellectual difficulties (Dworzynski, Ronald, Bolton & Happé,
2012). Adamou, Johnson and Alty (2018) investigated gender differences in those assessed
using the Autism Diagnostic Observation Schedule 2nd Edition (ADOS-2; Lord & Rutter,
2012). They found there was a gender bias which favoured the diagnosis of males, suggesting
the ADOS-2 was less sensitive in identifying females. This potentially contributes to gender
biases in assessment tools and diagnostic practices (Kresier & White, 2014). Therefore
theory, research and diagnostic tools may be favouring the male presentation of ASC, which
then filters into the public awareness of ASC being a ‘male disorder’.
Gender differences in presentation and symptomology
Some studies now suggest the prevalence of females is higher than previously considered
(Gould & Ashton-Smith, 2011; Kim et al., 2011). Gould and Ashton-Smith (2011) reported
that girls and women with ASC failed to be recognised due to a difference in their
presentation. These differences in symptom manifestation have resulted in gender inequities
in the research (Kreiser & White, 2014). Parents were more likely to attribute social
interaction difficulties to being ‘just shy’ for girls compared to boys (Kreiser & White, 2014).
Females with ASC were able to ‘camouflage’ or ‘mask’ their social interaction issues,
resulting in them being more difficult to detect (Attwood, 2007; Kenyon, 2014; Ormond,
Brownlow, Garnett, Rynkiewicz & Attwood, 2018). When Lai et al. (2011) matched female
and male adults in terms of their childhood ASC traits they found that females presented
fewer socio-communication symptoms on the ADOS-2 measure and had more lifetime
sensory issues compared to males. This supports studies suggesting females use more
compensatory strategies in social interactions than males, possibly because females are more
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motivated than males to appear ‘socially typical’. The perception of girls being more likely to
be labelled as ‘just shy’ suggests that ‘shyness’ is more socially acceptable for girls, which
may interact with gender being partially socially constructed.
As well as differences in their style of social interaction, females were observed to have
fewer repetitive behaviours compared to males (Van Wijingaarden-Cremers et al., 2014).
However, it was unclear whether girls were showing fewer repetitive behaviours or if the
measure was unable to capture female-specific repetitive behaviour. Females with ASC were
less likely to exhibit externalising behaviours, leading them to internalise their difficulties
and direct their distress themselves (Mandy et al., 2012). This may be related to many girls
and women receiving separate diagnoses associated with mental health problems, for
example anxiety, depression or eating disorders (Mandy et al., 2012; Bargiela, Steward &
Mandy, 2016; Kanfiszer, Davies & Collins, 2017). Research exploring the experiences of
women diagnosed in late-teens or adulthood found that their diagnosis helped them make
sense of their identity, especially in the context of gender and social relationships (Bargiela,
Steward & Mandy, 2016; Kanfiszer, Davies & Collins, 2017). Postponement of female ASC
diagnosis may lead to mis-diagnosis, or exacerbate other conditions such as mental health
problems. This, in turn, may delay the involvement of appropriate services.
Parental experiences of the diagnosis process
The findings thus far suggest that girls with ASC present differently from boys in terms of
their social interaction difficulties being more subtle due to ‘masking’, as well as
demonstrating fewer externalising behaviours and fewer repetitive behaviours. This may have
an impact not just on the assessment and diagnosis process, but also on being identified as
having difficulties by parents and caregivers. One study found that there were fewer early
caregiver concerns identified in girls compared to boys (Little et al., 2017). This led to some
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parents identifying issues significantly later for girls compared to boys (Begeer et al., 2013).
In contrast, other studies found parents were able to identify their daughters’ difficulties but
struggled to gain access to appropriate services (Cridland et al., 2014; Rabitte, Prendeville &
Kinsella, 2017). This suggests that differences in how females present compared to males
may contribute to late identification by caregivers and services, delaying diagnosis.
The parent-daughter relationship
In terms of the impact of an ASC diagnosis on parents and their daughters, the research is
limited and still emerging. The diagnosis of ASC for an individual can impact the whole
family system, resulting in a period of adjustment similar to grief regardless of the child’s
gender (Norton & Drew, 1994; Cridland et al., 2014; Hendrickx, 2015; Rabitte, Prendeville
& Kinsella, 2017). Parents of a child with ASC generally experience higher levels of stress
and lower wellbeing than parents of neuro-typical children (Gray, 2002). Some parents
managed this by developing a deeper understanding of ASC in order to be able to support
their daughter (Cridland et al., 2014), which appeared to have a positive effect on families’
management of stress (Rabitte, Prendeville & Kinsella, 2017). A review of current literature
was conducted to explore parental experiences, which found that adjustment was required
following diagnosis in terms of the parent-daughter relationship due to expectations
potentially influenced by gender (Senior, 2019).
Another finding of the recent literature review was that many parents felt there was a lack of
information about girls with ASC (Senior, 2019). They also experienced disbelief from others
and had concerns about their daughters’ vulnerability in relationships and their future in
general (Cridland et al., 2014). Another study explored the mother-daughter relationship and
found that early expectations of a close relationship were reshaped to manage expectations,
transforming into a different type of bond than first expected (Navot, Jorgenson & Webb,
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2017). There was also an adjustment in parents’ perception of their role as a continuing
advocate for their daughter, from the initial diagnosis process into adolescence and beyond
(Cridland et al., 2014; Mademtzi et al., 2017; Navot, Jorgenson & Webb, 2017; Rabitte,
Prendeville & Kinsella, 2017).
Summary
Most research thus far has focused on the male symptomology and experience of ASC.
Although understandable due to the current evidence that there is a higher prevalence of ASC
in males compared to females, more recent research has questioned this gender-bias in theory
and diagnostic tools. Differences in girls’ presentation may also have been the result of a lack
of or a postponed diagnosis, as girls were perceived as having more subtle difficulties
compared to boys. This may lead to parents having problems in identifying early signs in
girls or being able to request appropriate services. Parents were perceived as influential in the
diagnosis process and in the acquisition of further support from clinical and educational
services. Parents were also instrumental in assisting their daughters’ navigation of social
interactions and their attendant potential vulnerabilities that were pertinent in adolescence.
This suggests it would be valuable to gain more knowledge from the parents’ or caregivers’
perspective about their daughters’ diagnosis and how they facilitated understanding of
identity for their daughters and themselves.
Aims
The aim of the current study is to explore parents’ understanding of their daughters’ ASC. It
is hoped by finding out more about parents’ perceptions of noticing their daughters’
difficulties, the diagnostic process and how this impacted on themselves, more insight can be
gained into the presentation of girls to avoid postponed diagnoses. It is hoped this will also
give an insight into how parents may help to shape their daughters’ sense of self. As the
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driver of the diagnostic process in most cases, it is important to collaborate with parents and
caregivers to inform future support and interventions. An exploratory, qualitative approach
will be used in order to maximise the breadth of exploration of individuals’ experiences. By
gaining an understanding of how parents make sense of their daughters’ diagnoses, this may
help reduce the likelihood of parents and young people developing secondary mental health
difficulties.
Research question
Primary question: What is parents’ understanding of their daughters’ ASC?
Secondary questions: What are parents’ experiences of the diagnosis process, from first
realising there was a problem to getting the diagnosis? What are parents’ experiences of
having a daughter with ASC? What are their thoughts, beliefs and feelings about their
daughter with ASC? How, if at all, do their efforts to understand impact on their daughters’
sense of self?
Method
Design
This research used a qualitative, exploratory methodology in order to gain an insight into how
people understand and make sense of their experiences (Liamputtong, 2009), therefore
allowing a wide breadth of information about the participants’ experiences to be considered.
The study design was underpinned by social constructivist assumptions, meaning that
knowledge and understanding is socially situated and constructed via social interactions with
others (Creswell, 2009). Therefore, the study design and use of Interpretative
Phenomenological Analysis (IPA) were grounded in social constructivist assumptions,
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particularly the idiographic focus which aimed to offer an insight into how individuals in a
particular cultural and historical context made sense of a particular phenomenon (see
Appendix L and N).
Participants and recruitment
Inclusion Criteria:
The inclusion criteria for this study were:
Parent or primary caregiver of adolescent female with a diagnosis of high-functioning
ASC made by a relevant professional (e.g. Clinical Psychologist or Paediatrician).
Daughter between the ages of 11 and 16 years old.
English as parent or caregiver’s first language.
Parent or caregiver able and willing to participate in study.
Exclusion Criteria:
Daughter had a diagnosis of an intellectual disability or cognitive impairment.
Parents of young people who had additional mental health or neurodevelopmental diagnoses
were included due to the commonality of co-morbid difficulties.
Recruitment procedure
Ethical approval for the study was gained by the University of Surrey Faculty of Health and
Medical Sciences Ethics Panel (appendix B). Participants were recruited via local mainstream
secondary schools with specialist educational units or via online forums and internet support
groups for parents and young people with ASC (appendices C and D). Recruitment was
conducted in conjunction with a colleague’s research which focused on experiences of girls
with ASC (titled “Sense of self and gender identity in young females with an ASC”, Taylor,
2019). A joint recruitment approach was chosen to reduce the amount of paperwork and
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cognitive loading whilst increasing participant recruitment opportunities. Parents and young
people were able to participate in one study or both studies; appropriate paperwork for
recruitment was used accordingly.
1. Four local mainstream secondary schools with specialist educational units were
contacted via post or email (appendices C and D). The gatekeeper of the online
forums, in particular Facebook groups, known to the researcher’s supervisor were
contacted via email or online message to ask permission to advertise the study
(appendices C and D). Following approval, the study was then promoted on the online
forum using a recruitment poster (appendices E and F) and interested parents’ were
invited to participate by contacting the researchers.
2. Interested schools were given further information and were asked to sign a permission
letter stating their agreement. Communication via the primary contact of the school
identified parents of pupils who fulfilled the inclusion criteria. Interested parents in
the online forums were asked to contact the researcher by email and fulfilment of the
inclusion criteria was assessed during these communications.
3. Information packs were sent to parents of pupils who fulfilled the criteria and who
expressed an interest in participating in the study when it was discussed with the
primary contact of the school. Information packs were sent via email to interested
parents from the internet forums who fulfilled the inclusion criteria (appendices G and
H). This information pack included providing the researcher and researcher’s
supervisor contact details in case they wished to ask further questions. Parents were
also given a consent form which they were asked to return to the researcher if they
were happy to participate in the study (appendices I and J).
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Participants
Participants were recruited between January and July 2018. A total of nine parents expressed
an interest in taking part in the study who were all recruited via online forums. No parents
were recruited through the school liaisons. Inclusion and exclusion criterion were clarified by
self-report through email correspondence. Eight parents met the inclusion and exclusion
criteria and were sent additional information about the research procedure and a consent form
(appendices G or H and I or J). Six parents responded to this email by providing informed
consent and agreeing to take part, four of whom had daughters who were involved in the
aforementioned linked study. The parents were invited to meet to conduct the interview with
the researcher at the participants’ home, at the University of Surrey site or a private room in
the young person’s school. In order to increase geographical reach, if the participant or
researcher were unable to meet for a face-to-face interview, the option of using Skype, Zoom
or FaceTime was offered. All six interviews were held in participants’ homes. A pre-study
interview was conducted with every parent following a review of consent in order to gather
demographic information about the parents. The demographic information collected was
parental name, age, occupation, daughters’ name, age, age at diagnosis, role of professional
who made the diagnosis, any other diagnoses and ethnicity.
Five of the parents were biological mothers of the young person with ASC. One mother had
adopted her daughter at the age of two and a half years old, approximately ten years ago.
Their daughters were diagnosed between the ages of 10 and 14 years old. Prior to the
completion of the interview, demographic information was collected by the researcher (Table
1). Some demographic information has been withheld from the published study to protect the
identities of the participants, e.g. parent’s age, occupation and location.
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Table 1. Summary of participant demographic information
Parents’
pseudonym
Daughters’
pseudonym
Daughters’ diagnosis Age at diagnosis
(years)
Angela Beth Asperger’s Syndrome/ High-Functioning
Autistic Spectrum Disorder
11
Tracey Alice High-Functioning Autistic Spectrum
Disorder
12
Sally Jane High-Functioning Autism 11
Grace Lola High-Functioning Autistic Spectrum
Disorder
10
Jackie Sarah Asperger’s Syndrome/ High-Functioning
Autistic Spectrum Disorder
14
Rachel Eve High-Functioning Autistic Spectrum
Disorder
11
Data collection
Semi-structured interviews were designed to elicit responses to the main research question
(appendix K for interview schedule). The interview schedule was formulated with two other
researchers who were experienced in qualitative research and/or autism research and focused
on gaining information about participants’ perceptions and experiences of having a daughter
with ASC. The interview schedule was shared with every participant before the interview
took place to ensure they were able to ask any questions beforehand.
Data collection procedure
The researcher liaised with participants who confirmed their ability to meet the eligibility
criteria and who completed the consent form provided in the information pack to arrange a
time to conduct the main interview. The setting of the interview was agreed with the
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participant to provide the greatest convenience and safety for both the participant and
researcher. All interviews in this study took place in the participants’ homes.
The researcher met the participant at the agreed time and place, allowing time for questions
from the participant and the gathering of some demographic information by the researcher.
The participant was given a paper copy of the interview schedule in advance and told that the
expected interview duration would be between 45 and 60 minutes. The interviews were
recorded using an encrypted audio recorder and later transcribed either by the researcher or a
third-party transcription company. The researcher also recorded field notes on each interview
and their own observations and reflections. Participants were offered the opportunity to see
their transcript prior to the analysis process in order to clarify or add to their accounts. All
participants requested their transcripts but no amendments were made.
Data Analysis
The transcripts were analysed using Interpretative Phenomenological Analysis (IPA) (Smith,
2008). The rationale for using IPA was that it emphasises the in-depth analysis of each
individual’s experience by taking into account each person’s social context. It was
appropriate for an exploratory, inductive approach underpinned by social constructionist
epistemology. Reflexivity was important throughout the research process to consider the
impact of the researcher on the study (appendix L).
Data analysis procedure
1. Initially, each transcript was read multiple times alongside the audio recording. The
researcher made notes on their observations about the interview experience, or other
comments that were thought to be potentially significant. These included content, use
of language and initial tentative interpretative comments. Personal reflexivity was
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also noted, using field notes to consider difference and diversity. These were written
in the left-hand margin of the transcript.
2. The initial notes made by the researcher were then transformed into emerging themes
by formulating a concise phrase using a higher level of psychological
conceptualisation whilst still being grounded in the participants’ accounts. These were
written in the right-hand margin of the transcript.
3. Following this, connections between the emerging themes were considered. Emerging
themes were written chronologically and grouped together in accordance with
conceptual similarities. Each cluster or grouping of emergent themes were given a
descriptive label. Some emerging themes which did not coincide with a cluster
following multiple considerations were omitted at this point.
4. A final list of the most occupied clusters was completed and titled with superordinate
themes and emergent themes. Subthemes were recorded with the associated line
numbers in order for the researcher to refer back to the original transcript quote. This
was repeated for each transcript.
5. The process for considering the superordinate themes at an individual level was then
repeated using the final themes from all of the transcripts. Similar superordinate
themes were grouped together and developed into a final theme. Other themes felt to
be important but not occurring as often were noted to include in the narrative account
of the study (see appendix M for extracts of coded transcripts).
Ethical issues
Firstly, parents of children with ASC may be under considerable stress and have
vulnerabilities in discussing potentially emotive topics. Informed consent was gathered and
participants were given opportunities to discuss concerns throughout the process. Information
packs and interview schedules were also given before the interviews took place to allow
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participants to consider the topic areas beforehand. Participants were made aware of their
participation being voluntary and their right to withdraw from the study.
All information gathered was made anonymous and pseudonyms have been used throughout.
Any other possible identifiers such as local area or school name were also removed.
Participant information was kept on a password protected computer in a secure place. In
accordance with the Data Protection Act (2018), audio recordings and copies of data will be
destroyed after five years.
In presenting the data, quotes were used to illustrate themes using pseudonyms and
anonymised information. If quotes needed to be abbreviated, ellipses were used to show
where material had been left out. Square brackets were used to clarify meaning and context of
quotations.
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Findings
Three superordinate themes were identified after extensive analysis of the transcripts; 1.
Parenting journey – from a position of powerlessness to being an expert by experience, 2.
Social interaction is more difficult to navigate for girls and 3. Diagnosis affected her sense of
self (see table 2 for superordinate and emergent themes).
Table 2. Summary of superordinate and emergent themes across all six interviews
Superordinate Themes Emergent Themes
1. Parenting journey – from a position
of powerlessness to being an expert
by experience.
(a) I was struggling in the dark.
(b) Relief and grief.
(c) Constant discovery.
(d) The future – hopeful for some, a huge worry for
others
2. Social interaction is more difficult to
navigate for girls.
(a) Difficulties forming and maintaining friendships as
an early warning sign.
(b) Girls are motivated to ‘mask’ difficulties.
(c) I fear she is vulnerable.
3. Delayed diagnosis affected her sense
of self.
(a) Delayed diagnosis brings another set of problems.
(b) We missed the boat in preparing her.
1. Parenting journey – from a position of powerlessness to being an expert by
experience.
(a) I was struggling in the dark:
Having little knowledge or awareness of ASC, some parents took a long time to make a
connection between their children’s traits and ASC. Grace said “I knew absolutely nothing”,
whereas Rachel talked about having a limited awareness of ASC apart from its portrayal in a
film.
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“… the only time I had come across autism before was Rain Man…I just didn’t really
know much about it.” (Rachel).
Two of the mothers had an awareness of ASC prior to their daughters’ diagnosis due to their
professional backgrounds (Angela and Tracey). Whether parents were aware of ASC before
the diagnosis or not, all of the participants described feeling unheard when they presented to
services with their concerns. Most parents spoke about feeling dismissed by health and
educational professionals.
“I’d had my concerns. I’d raised them and everyone just kept saying ‘oh no’ you
know ‘there’s nothing wrong’” (Angela).
“I raised it with the teacher and she said, ‘oh no, she’s fine’” (Tracey).
Parents’ initial lack of knowledge, as well as feeling dismissed and unheard by professionals,
resulted in most of them developing negative beliefs about their parenting abilities. Many
blamed themselves for their daughters’ difficulties, which was sometimes reinforced by
professionals who suggested they attend parenting courses before the young person was
assessed.
“We felt that we were struggling with parenting more than other parents would…that
made us question our parenting, I think, more than anything” (Rachel).
“…you feel that you’re just being a really rubbish mum because nobody believes you
because it’s so subtle” (Sally).
As Sally mentioned, some mothers felt the subtleties in their daughters’ presentation meant
they were not always identifiable to others. Due to the limitations in parents’ knowledge of
ASC and the differences in girls’ presentations compared with boys’, they felt ultimately
powerless and alone.
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(b) Relief and grief:
Following their daughters’ diagnoses, mothers discussed their experiences of going through a
period of adjustment, beginning with relief and processing feelings of bereavement. Parents
found it difficult to gain access to services who would assess their daughter for ASC due to
limited awareness, subtleties in the girls’ presentation, not feeling listened to and limited self-
efficacy. When they finally accessed services and their daughters were given a diagnosis,
there was a sense of relief for parents who had been fighting to be heard.
“There was relief that I understood…I could understand Alice more…” (Tracey).
“We were relieved when we were told the diagnosis for Eve” (Rachel).
Although parents were relieved to gain an ASC diagnosis after pursuing this for a prolonged
period, many also experienced a sense of mourning for the neuro-typical daughter they felt
they had lost.
“I really felt validated…despite the fact that I’d been fighting for the diagnosis, it
really knocked me for six… it was a kind of bereavement type cycle” (Jackie).
“…I went through a period…of sadness, of grief almost…coming to terms with a
daughter with additional needs” (Tracey).
There was a sense of the parents being abandoned by services after the diagnosis with a lack
of support from health or educational services. Some parents felt that the lack of support from
services impacted negatively on their daughter and even those who later gained access to
support felt it was too late to make a real difference. For this reason, parents quickly
recognised the need to just get on with it themselves without the support of services.
“…you get diagnosed and discharged with very little support” (Angela)
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“I think it was quite negative in the lack of support…[requested further referral to
CAMHS, was told] ‘oh you’ve just got to go with it and work it out’…that’s not what
I want to hear” (Grace).
(c) Constant discovery
After coming to terms with their daughters’ diagnoses, parents sought to educate themselves,
which turned into an ongoing experience of what could be conceptualised as constant
discovery. The mothers reported becoming more proactive in increasing their knowledge and
understanding about ASC via research. This allowed them to develop strategies to help
support their daughters in the absence of service input.
“I do a lot of research…I try and give Alice as many tools because I think it’s
important…” (Tracey).
“We got loads of books. Load of talks, whenever there’s a talk in the area about
autism I’m there” (Grace).
Most participants described re-evaluating their parenting strategy and moving towards a more
person-centred style. For example, Tracey said “The parenting for Alice is completely
unique”, distinguishing between their style of parenting for their daughter, how they parented
their other children and how they perceived the parenting style of others.
“…we just try to sort of say ‘okay, this is the situation, how do you think we can sort
it out in a Jane friendly way?’” (Sally).
This suggested that parenting was not perceived as static, but more of a proactive and ever
evolving process: they constantly sought knowledge. The parenting approach appeared to be
flexible and unique. Some mothers also developed their own strategies for building their self-
P a g e | 25
efficacy and support networks, such as attending parenting courses and pursuing online ASC
groups.
“[Discussing a parenting course] But after I had done it and learnt even more, not just
about autism and the behaviours but how best to deal with that…I think that really
helped” (Rachel).
“[Discussing a support group for parents on Facebook] That’s really great for hints
and tips sharing and it’s celebrating those little things…it’s those stupid little things,
it’s a whole group of society that get it. It’s kind of like an exclusive club” (Sally).
(d) The future – hopeful for some, a huge worry for others
There appeared to be an uncertainty regarding parents’ perceptions of the girls’ futures. For
Sally there was hope for the future, “I hope that she is going to be independent” coupled with
concern “I really, really worry for the future…left to her own devices she might possibly be
dressed in her own time at three in the afternoon”. This illustrated that parents could hold
both positions of hope and worry simultaneously.
Grace and Rachel discussed their hope for life to become more manageable for their
daughter and for them to progress to future independence.
“I’m kind of hoping that we can gradually work towards her getting, not better, I
know it’s not going away, but like getting easier for her”(Grace).
“I would like to think that she will live independently, maybe have a long-term
relationship” (Rachel).
Despite the hopefulness discussed by some mothers, others were worried about whether their
daughter would ever become independent. This was particularly apparent for the parents
P a g e | 26
whose daughters had co-morbid diagnoses, such as mental health difficulties or other
neurodevelopmental conditions, which may add complexity to their view of the future.
“I think she’s going to have a very, very difficult life… My fear is she won’t be able
to get a job and generally she’ll just be more and more miserable because she’s
cutting everything that could possibly lead to fulfilment”(Jackie).
“My fears are that she will never move out” (Sally).
This highlighted differences between the mothers interviewed with regard to whether they
expressed more hope or more concern about their daughters’ future. Their primary focus
seemed to be on whether their daughters would be able to live independently or not. This may
also relate to parents experiencing continued pressure to advocate for their daughter and
feeling unsure if this would go on indefinitely.
2. Social interaction is more difficult to navigate for girls
(a) Difficulties forming and maintaining friendships as an early warning sign
All participants highlighted their daughters’ issues in forming and maintaining friendships.
Most parents discussed problems with friendships as one of the early warning signs which
made them aware their daughter might need some additional support. For Sally and Jackie, it
was an absence of friendships which indicated difficulties; “Well, she doesn’t have any
friends” (Sally), “She doesn’t have any friends” (Jackie). For others, it was the lack of
consistency in the friendships which caused concern. This was either highlighted by the
parents themselves or by a teacher at school.
“She had major, major problems making friends, keeping friends, always falling out”
(Grace).
P a g e | 27
“…but the friendships she would be able to establish them but not maintain them”
(Angela).
Parents’ concerns regarding their daughters’ ability to make and maintain friendships was
often an indication of the girls’ struggles to interact socially with others. It was difficult for
parents to gauge the level of their daughters’ issues without considering the wider impact of
these issues on friendships and relationships. They focused on social rules and boundaries, as
opposed to a lack of communication.
“…communication for her is not a problem but the social aspect is.” (Angela).
“…she doesn’t understand facial expressions and she can look at someone in a real, a
mean look, which she doesn’t mean. She doesn’t know what that means but obviously
people take it the wrong way” (Grace).
“I don’t really know whether she understands completely what’s going on. Or if she
understands, she can’t necessarily verbalise” (Rachel).
One aspect of the social difficulties experienced may have been the difference in the girls’
interests compared to their peers. Sally and Angela discussed their daughters’ interests,
emphasising the differences from other girls their age.
“She’s very much still into climbing trees and building dens…unlike most girls her
age, fashion and makeup and shopping. She likes the idea of shopping, she likes the
idea of fashion…but I think that’s probably indoctrinated by society. But really, she’s
a jeans and hoodie girl” (Sally).
“Her interests do tend to be a bit different you know she likes going to the Sea Life
centre because she loves sharks and she will obsessively take pictures of any flower or
animal that she comes across” (Angela).
P a g e | 28
(b) Girls are motivated to ‘mask’ difficulties
All parents discussed their daughters’ ability to hide or ‘mask’ their difficulties in social
interactions, making them more difficult to pick up. Rachel stated “she’s very good at
masking”. Angela and Rachel spoke about how their daughters were able to present
themselves as sociable to others and how this was incongruent to the girls’ realities.
“She comes across as really bubbly and funny and all of those things but actually it’s
not the reality for her you know she does really struggle socially” (Angela).
“She appears to just be like any other child. I think she fools a lot of people.
Sometimes we almost forget that there’s an underlying cause for the behaviour
because she does just get along” (Rachel).
Sally spoke about a disparity between the way Jane presented herself in different contexts,
such as school and home: “…she hides it so well at school, she says she’s got a completely
different personality at school to the at home version of Jane”.
The perceived ability of the girls to ‘mask’ difficulties in different social situations was
considered by parents to be influenced by societal gender expectations of girls, making them
more prone to being influenced by others and to be driven to fit in.
“She just wants to fit but I don’t think she knows, well she doesn’t know how to fit”
(Sally).
“I think it was much harder for us to spot the difference because she was a girl and
because she masks, and because she is a people pleaser. She wants to do things so
that she, as I said, fits in” (Rachel).
The drive to fit in may be influential in girls’ development of social strategies, such as
‘masking’. This could also be influential in the delay in girls receiving an ASC diagnosis,
P a g e | 29
because they are able to hide the difficulties experienced in relating to other people and so
remain undetected by professionals.
(c) I fear she is vulnerable
Due to the girls’ difficulties in social interactions and their perceived ability to ‘mask’ these
issues, many parents expressed concerns about their daughters’ potential vulnerability in
social situations.
“She doesn’t seem to have any stranger-danger awareness” (Grace).
“…she’ll talk about anything and everything to the lady on the bus. She gives out far
too much information. So, socially, for that kind of thing as well, I do worry when she
goes out” (Sally).
Parents’ discussed social vulnerability in terms of future relationships. Some articulated
concerns that their daughters could be taken advantage of by someone who either did not
know they had social interaction issues, or someone who was aware of these issues and
wished to exploit them. One parent had been told by her daughter that a boy had asked to
have photos of her changing, resulting in the parent needing to coach her through the
situation in a step-by-step manner. Although the parent was confident her daughter had “a
strong sense of right and wrong”, it highlighted the vulnerability of some of the girls who
required extra support when dealing with partners or potential partners.
“…they’re so vulnerable and gullible, that they can be talked into doing things that
really, they shouldn’t be doing” (Rachel).
The mothers also talked about the problems their daughters encounter when connecting with
others online. Jackie talked about the way her daughter’s difficulties in maintaining
relationships was as much of an issue in her online relationships: “She has online friends,
P a g e | 30
relationships, but she’s not very good at keeping them”. She explained this in part because of
the way she responds to new friends: “I think she’s quite obsessive when she finds someone,
and then people, they just cut her dead” (Jackie). Rachel responded to her daughters’
difficulties with social interactions online by limiting the extent to which she allowed her
access to social media: “Because she struggles with relationships and social communication,
we’ve got a semi-ban on social media” (Rachel).
Although masking was perceived to be developed by the girls as an adaptive skill, parents
acknowledged the negative aspects of this, causing their daughters’ autism to be undetected
by others, which, in turn, increased their vulnerability. Parents were worried when their
daughters went out into the community and interacted with others online due to their lack of
social awareness. They also expressed concerns about future romantic relationships in which
the girls could be taken advantage of.
3. Delayed diagnosis affected her sense of self
(a) Delayed diagnosis brings another set of problems
The delay in the ASC diagnosis meant that it was eventually given at a very sensitive time in
the girls’ lives. They had already begun to deal with adolescence and were in the process of
developing their social identity and fitting in with peers. They then had to take in the threat of
an ASC identity.
Although initially hopeful about the doors an ASC diagnosis may open, most of the parents
perceived their daughters’ diagnoses as having a negative impact on their wellbeing and self-
esteem. They felt the timing of the diagnosis was problematic.
“…when she got the diagnosis I felt like by that point it had gone too far so then we
were having to deal with other things” (Angela).
P a g e | 31
“…when she got the ASD level, how I’d hoped it would help her, it didn’t help her at
all” (Jackie).
For those with co-morbid mental health or neurodevelopmental issues, parents felt these
problems were exacerbated by the difficulties associated with their daughters’ ASC
diagnosis.
“…the mental health issues have made the autism much, much worse…when she’s
more anxious, she’s more sensitive and has heightened sensitivities. They do really,
really interrelate” (Jackie).
“…I think there’s a lot of overlap between. I think anxiety drives a lot of it” (Rachel).
Some of the girls rejected their ASC diagnosis and were in denial about their difficulties. This
resulted in them either not being able to or not willing to utilise support offered to them.
“She’s definitely struggled to accept her diagnosis and still now will not” (Angela).
“She’s completely in denial, she still says there’s nothing wrong with her, you
know?” (Grace).
It appeared that many parents experienced disappointment following their daughters’
diagnosis due to the length of time pursuing services, resulting in the diagnosis being given in
early adolescence which is a highly sensitive time in terms of forming a positive identity. The
impact of other conditions which may interact with the ASC traits were also noted.
(b) We missed the boat in preparing her
Most parents felt disappointed with the impact of the ASC diagnosis on their daughters’ life.
After initially being relieved and hopeful for support, many believed that they had missed the
opportunity to present the diagnosis in a positive light. Again, this appeared to be linked to
the timing of the diagnosis. Jackie said “…you can put quite a lot in when they’re young and
P a g e | 32
they get to an age where you’ve lost your window of opportunity to help them with that”.
Angela and Tracey talked about receiving late input from services and the fight to gain
continued support.
“...that late diagnosis and that late input of support and that constant having to fight
everything yeah could have been a very different journey” (Angela).
“[After stating daughter’s diagnosis was given the second year at high school]…it’s
push, push, push all the time…if we don’t go down the statementing route for her
she’s not going to get the help that she deserves” (Tracey).
Some parents questioned their daughters’ sense of self-identity and perceived some
difficulties in their ability to make sense of the ASC diagnosis. Parents felt the girls’ self-
identity was not fully realised.
“[referring to daughter’s perspective of having ASC and mental health difficulties]…
you start feeling excluded, not understanding yourself, feeling like an alien” (Jackie).
“[when asked how the way the parent made sense of autism impacted on daughter’s
sense of self] …I don’t know if she has a sense of self. It’s almost like she’s oblivious”
(Rachel).
Some parents indicated there was a collaborative process of parents helping to facilitate their
daughters’ exploration of self-identity. Parents’ assumed responsibility in helping to navigate
the girls’ understanding of themselves indicated high levels of assistance and support.
“…she needs to understand who she is and what makes her tick and what she can and
can’t cope with and if we don’t talk to her about it, how’s she going to understand?”
(Tracey).
P a g e | 33
“[Discussing lack of organisational skills and need for additional support from parent]
They’re probably my biggest concerns because she’s not going to have mummy all the
time” (Sally).
For some, there was a sense of wanting to build a positive ASC identity for their daughters,
but not feeling able to due to the delay in diagnosis. Jackie spoke about wanting to educate
her daughter about ASC when she was young as this was perceived as positive, but not
feeling able to due to her not being given the diagnosis until later.
“Given that she didn’t actually have an Asperger’s diagnosis then…so I didn’t feel
comfortable telling her she was something…it would have made a difference because
it could have been so positive” (Jackie).
It appeared that most parents perceived an earlier diagnosis to be linked with more positive
outcomes, potentially improving the girls’ wellbeing and managing problems exacerbated by
mental health difficulties in a more holistic way.
Discussion
The current research examined the experiences of mothers with adolescent daughters who
have ASC in order to address the original research question “What is parents’ understanding
of their daughters’ ASC?” Three superordinate themes were identified, the first of which is
the parenting journey – from a position of powerlessness to being an expert by experience.
The second is social interaction is more difficult to navigate for girls, and the third is
diagnosis affected her sense of self.
These findings provide unique insight into parents’ changing perceptions of their skills and
self-efficacy throughout the diagnosis journey. Girls were more motivated to ‘mask’
P a g e | 34
problems due to a desire to ‘fit in’ which seemed to be related to gender and societal
expectations more prominent in adolescence. The combination of receiving a late diagnosis in
the critical stage of adolescence, the impact of ‘masking’, other co-morbid conditions and
mis-diagnoses negatively affected girls’ sense of self. These factors made integration of ASC
into the girls’ identities problematic, despite additional support being provided by parents.
Parenting journey
The mothers’ understanding of their daughters appeared to develop over time. They were in a
position of powerlessness due to lack of knowledge and feeling unheard by professionals,
resulting in negative beliefs about their own parenting. Following diagnosis, mothers reported
relief and grief, resulting in adaptation to parenting a child with additional needs. They
became proactive in gaining more knowledge and developing their own strategies to build
self-efficacy post-diagnosis, leading them to become experts through experience. The future
was perceived as hopeful for some but a huge concern for others. By using an in-depth
qualitative methodology, each parent’s experiences within their journey were explored,
highlighting similarities and differences. One of the participants was an adoptive mother who
emphasised the comparable features of ASC and attachment difficulties (Moran, 2010),
resulting in her attributing problems to attachment difficulties. This resulted in her not being
aware of ASC until much later in her daughter’s development. This was an example of
parents’ journeys not being straightforward and linear, but consisting of multiple journeys as
they search for answers.
Although there were parts of the parental journey which were consistent with previous
research, for example parents struggling to gain access to appropriate services pre-diagnosis
(Cridland et al., 2014; Rabitte, Prendeville & Kinsella, 2017), previous collation of parents’
diagnosis journeys has lacked specificity in exploring the narrative understanding of the
P a g e | 35
development of perceived power and self-efficacy over time (Senior, 2019). This was an
important finding because it suggests parents may feel differently about their parenting
abilities and self-efficacy depending on where they were in the diagnosis journey. This
should be considered when professionals work with parents in determining the amount of
support perceived to be required and needed at different time points.
Girls’ difficulties with social interaction – social context
Findings related to social interaction being difficult for girls to navigate in terms of their
friendships, how they used ‘masking’ and their potential vulnerability are consistent with the
current literature (Attwood, 2007; Cridland et al., 2014; Ormond et al., 2018). Although
appearing to ‘fit in’ was perceived as a positive strategy, ‘masking’ or ‘camouflaging’ was
seen as problematic by the mothers interviewed, who felt it led to poorer understanding of
their daughters’ difficulties. Parents understood these difficulties in relation to their
daughters’ social context, whereby gendered behaviours are socially constructed which
contributes to identity formation (Carter, 2014). Therefore, friendship and social problems
may be more of an early indicator of ASC in girls compared to boys because of the additional
burden placed on girls to have greater social skills as a result of social stereotypes relating to
gender leading to that expectation (Lorber, 1994). This may relate to the later diagnosis of
females, as they were less able to ‘mask’ social difficulties or use imitation as girls get older.
This was particularly noted in adolescence due to an increase in more complex social
situations (Bauminger et al., 2008; Cridland et al., 2014). It also draws attention to why later
diagnosis in females was considered problematic, as adolescence is the period when young
people are forming their identity through understanding themselves and others (Erikson,
1950).
P a g e | 36
Girls’ sense of self
Parents’ reported that their daughters’ difficulties in incorporating ASC into their identity was
partly due to the delay in gaining a diagnosis. They acknowledged that gaining the diagnosis
was not the end of their story and that it often led to more challenges, such as exacerbation of
co-morbid conditions and rejection of ASC. This aligns with previous literature stating that
delay in diagnosis for girls may contribute to secondary mental health conditions, struggles
engaging with peers and a negative view of self during adolescence (Humphrey & Lewis,
2008; Mandy et al., 2012; Mademtzi et al., 2017). The late diagnosis resulted in parents
missing an opportunity to support their daughters in gaining a positive view of ASC,
emphasising the relation between identity development and receiving a diagnosis in
adolescence. The addition of an ASC diagnosis during the adolescent stage of development,
no matter how sought by parents, is likely to act as a threat to their daughters’ identity and be
evaluated negatively, as discussed in Social Identity Theory (Tajfel & Turner, 1986).
The impact of ‘camouflaging’ or ‘masking’ may also result in threats to self-perception. Hull
et al., (2017) found that many adults with ASC felt they were not being their ‘true self’ when
they were using compensation techniques such as ‘masking’. This highlights the dilemma for
people with ASC to understand themselves in a societal context which implicitly tells them to
adapt and change in order to ‘fit in’. The gender expectations placed on females to be
sociable beings and prioritise relationships (Lorber, 1994) creates added pressure for girls
with ASC to change their behaviour, potentially making it more difficult for them to have a
positive sense of self. As a consequence of the active nature of parenting a daughter with
ASC, the continuation of support and advocacy provided by parents appears to extend to
helping support the development of their daughters’ self-identity, adding to concerns about
their daughters’ future if this was problematic.
P a g e | 37
As well as ASC, most of the girls have additional diagnoses related to mental health
difficulties or neurodevelopmental conditions, e.g. depression, anxiety, Tourette syndrome
and ADHD. This is supportive of previous research stating that many females receive further
diagnoses because of the tendency for girls and women to internalise their feelings of distress
(Mandy et al., 2012; Bargiela, Steward & Mandy, 2016). It is likely that these additional
diagnoses have further threatened the girls’ self-identity as discussed in the Social Identity
Theory (Tajfel & Turner, 1986) at the developmental stage where it was perhaps most fragile.
Limitations
There were a number of methodological limitations which should be considered when
discussing the findings of this research. The use of IPA as the method of analysis implicates
the transferability of the results due to its purposeful sampling and perspectives of only a
small group of parents. Therefore, the aim of the results outlined in this study were not to be
transferable to a broader population. It was hoped that by conducting research on a small
group of parents in depth, this would highlight important issues which might be researched
further in future studies using larger samples which could be researched qualitatively using
focus groups or surveys with open questions.
Another limitation of the study was the use of only mothers as the parent sample. Although
fathers were not excluded from participating, none indicated an interest in participating in the
research. This may be reflective of the parents accessing the internet forums where
participants were recruited or mothers being more involved with their daughters’ upbringing.
Recruitment of fathers would need to be broad, with participation as flexible as possible in
order to capture this population.
P a g e | 38
Clinical implications
Despite this being a single study based on a small number of participants, the findings are
suggestive of issues professionals might address. Parents highlighted challenges faced
throughout the diagnostic process and post-diagnosis. A lack of recognition of their
daughters’ difficulties by professionals in education and healthcare exposed a gap in
screening for girls which may need to be addressed via training, including the implementation
of screening tools specifically formulated for females. The current study also emphasised the
need for parents to feel heard and their point of view considered due to the potential impact
of the process on their self-efficacy. Formulation driven approaches could be used with
families in order to consider all potential avenues to reduce the negative impact of a diagnosis
of ASC and other co-morbid diagnoses on the girls’ sense of self. This may also assist in
implementing appropriate support and interventions at an earlier stage. The lack of support
for families following a diagnosis of ASC is problematic and potentially unethical. Despite
resources being limited, services should consider whether there is any scope to support
parents at the most vulnerable points in their journeys and consider how peer-support models
could assist with this in local services.
Future recommendations
As some of the recruitment was conducted alongside a colleague conducting research
focusing on the experiences of adolescent girls with ASC, there may be scope to compare the
experiences of mother-daughter dyads, focusing on the development of understanding and
self-identity. It would be useful to gain knowledge of the girls’ understanding whilst in the
same context as that of their parents to produce richer research findings.
The current study did not specify the gender of the parents, but similarly to other studies in
the field all of the participants were mothers. Due to the influence of gender expectations and
P a g e | 39
social context on the findings of this study, it would be beneficial to consider focusing on
fathers’ experiences in a future study. It would be interesting to compare any differences or
similarities in terms of parental roles and narratives about gender.
Summary
The aim of this study was to understand parents’ experiences of their adolescent daughters
with ASC. The findings from the current study signify a challenging journey for parents, one
which does not end when their daughters gain a diagnosis. Parents went through a process of
powerlessness to developing a higher understanding and self-efficacy for their own parenting
abilities. Many parents held a position of hope as well as concern for their daughters’ future.
Social interaction and the impact of this on relationships and potential vulnerability was
explored. ‘Masking’ was discussed as a strategy used to manage social interactions, which
appeared to be more important for girls due to a desire to ‘fit in’ and to societal gender
expectations. Negative implications of ‘masking’ were considered in terms of girls’ sense of
self when not being their authentic self. Parents felt the delay in their daughters’ diagnoses
contributed to the way they viewed themselves and their ability to integrate ASC into their
self-identities in a positive way. Adolescence as a critical period for self-identity and the
impact of additional mental health and neurodevelopmental conditions were also considered.
The use of IPA resulted in the outcomes being specific to a small group of parents that would
not be transferable to the wider population. Another limitation was the absence of fathers
included as participants, despite recruitment being open to both mothers and fathers. Future
research could focus on daughter-mother dyads to compare their experiences in the same
context. It could also focus on fathers’ experiences, as this appears to be a neglected group in
the literature.
P a g e | 40
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A. (2011). A Behavioral Comparison of Male and Female Adults with High
Functioning Autism Spectrum Conditions. PLoS ONE, 6(6): e20835.
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Autism Spectrum Conditions. The Lancet Psychiatry, 2(11), 1013-1027.
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Little, L., Wallisch, A., Salley, B. & Jamison, R. (2017). Do Early Caregiver Concerns Differ
for Girls with Autism Spectrum Disorders? Autism, 21(6), 728, 732.
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Lord, C. & Rutter, M. (2012). (ADOS-2) Autism Diagnostic Observation Schedule, 2nd ed.
Torrance, CA: Western Psychological Services.
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Mademtzi, M., Singh, P., Shic, F. & Koenig, K. (2017). Challenges of Females with Autism:
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Major Research Project Empirical Paper: List of Appendices
Appendix A: Guidelines for Authors (Removed for E-Thesis)
Appendix B: Evidence of Ethical Approval………………………………….....46
Appendix C: Recruitment Email or Letter………………………………………48
Appendix D: Recruitment Email or Letter – Joint Version……………………..49
Appendix E: Recruitment Poster………………………………………………..50
Appendix F: Recruitment Poster – Joint Version…………………………….....51
Appendix G: Information Sheet…………………………………………………52
Appendix H: Information Sheet – Joint Version………………………………..56
Appendix I: Consent Form………………………………………………………60
Appendix J: Consent Form – Joint Version……………………………………..62
Appendix K: Interview schedule………………………………………………..64
Appendix L: Self-reflexivity Account…………………………………………..66
Appendix M: Examples of Coded Transcripts…………………………………..68
Appendix N: Critical Appraisal using Yardley’s (2000) Guidelines……………73
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Appendix B: Evidence of Ethical Approval
Faculty of Health and Medical SciencesEthics Committee
Chair’s Action
Proposal Ref: 1345-PSY-17 (Studies 1 and 2)
Names of Students/Trainees:
AMBER TAYLOR(1) HANNAH SENIOR (2)
Title of Project: (1) Sense of Self and Gender Identity in Young Females with an Autism Spectrum Condition
(2) An investigation of parents’ experiences around seeking and receiving a diagnosis of Autism Spectrum Conditions (ASC) for their daughters and the sense made of their child in light of these.
Supervisors: Dr Emma Williams, Dr Kate Gleeson
Date of submission:
Date of resubmission:
19th December 2017
15th January 2018
The above Research Project (Studies 1 and 2) has been re-submitted to the Faculty of Health and Medical Sciences Ethics Committee and has received a favourable ethical opinion on the basis described in the protocol and supporting documentation.
The final list of documents reviewed by the Committee is as follows:
Ethics Application Forms
Detailed protocol for the project
Participant Information sheets
Consent Forms
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Interview Schedule/Recruitment Email/Recruitment Posters
Risk Assessment
Insurance Documentation
All documentation from this project should be retained by the student/trainee in case they are notified and asked to submit their dissertation for an audit.
Signed and Dated: ___24/01/2018______________
Professor Bertram Opitz
Chair, Ethics Committee
Please note:
If there are any significant changes to your proposal which require further scrutiny, please contact the Faculty of Health and Medical Sciences Ethics Committee before proceeding with your Project.
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Appendix C: Recruitment Email or Letter
Dear XXXXXX
As part of my clinical psychology doctorate at the University of Surrey, I am conducting a research study exploring parents’ experiences of having a daughter with Autism Spectrum Conditions (ASC).
Study title: An investigation of parents’ experiences around seeking and receiving a diagnosis of Autism Spectrum Condition (ASC) for their daughters and the sense made of their child in light of these.
I am hoping to interview a minimum of five parents. To participate, parents must speak fluent English. Additionally, the young people must be aged between 11 and 16yrs, have a diagnosis of ASC made by a professional and not have a learning disability.
The study will involve a pre-study meeting and one interview lasting approximately 45-60 minutes. Each interview will take place in a quiet and confidential space that is accessible to the participants e.g. at home or in a quiet room in the child’s school.
I hope to start recruitment in the New Year and are therefore emailing to enquire if this is something that you would be interested in promoting? I am happy to discuss the research in more detail over the phone if you would prefer. Please see attached recruitment poster for more information.
If you have any questions, then please do not hesitate to contact me, or my colleague via the details listed below.
We look forward to hearing from you,
Yours sincerely
Hannah Senior
Trainee Clinical Psychologist
XXX
Tel: XXX
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Appendix D: Recruitment Email or Letter – Joint Version
Dear XXXXXX
As part of our clinical psychology doctorate at the University of Surrey, we are conducting two research studies exploring both parents and young females’ experience of Autism Spectrum Conditions (ASC).
Study 1: Experiences of young females with ASC (Amber Taylor).
Study 2: Experiences of parents who have a daughter with ASC (Hannah Senior)
We are hoping to interview approximately 8-10 female adolescents and their parents. Participants can express an interest in both studies OR only one study.
To participate, parents and young females must speak fluent English. Additionally, young females must be aged between 11 and 16yrs and not have a learning disability.
Study 1 will involve two interviews lasting approximately 30-40 minutes. Each interview will take place either at their home or at school (if possible). Study 2 will involve a pre-study meeting and one interview lasting approximately 45-60 minutes.
We are therefore emailing to enquire if this is something that you would be interested in promoting within your school? We are happy to discuss the research in more detail over the phone if you would prefer. Please see attached recruitment poster for more information.
If you have any questions, then please do not hesitate to contact me, or my colleague via the details listed below.
We look forward to hearing from you,
Yours sincerely
Amber Taylor Hannah Senior
Trainee Clinical Psychologist. Trainee Clinical Psychologist
Email: XXX Email: XXX
Tel: XXX Tel: XXX
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Appendix E: Recruitment Poster
I am looking for volunteers for my research study about parents’ experiences of having a daughter with an Autism Spectrum Condition (ASC). It is hoped that this research might help to develop how people understand girls’ with ASC and provide better support for them and their parents.
PARTICIPANTS NEEDEDARE YOU THE PARENT OF A DAUGHTER WHO HAS AN AUTISM SPECTRUM CONDITION?
IS SHE AGED BETWEEN 11-16 YEARS?
Who? Parents who have a daughter aged between 11-16 years who has a diagnosis of ASC. In addition, you must be able to speak English Fluently. Unfortunately you cannot take part if your daughter also has a learning disability.
Where? Interviews will take place at your home or in a quiet room in your child’s school (depending on your preference).
How long? The interview will take 45-60 minutes. I am able to meet with you for a pre-interview meeting to discuss the study and answer any of your questions. All interviews are confidential and anonymous.
Interested? Contact Hannah Senior (Trainee Clinical Psychologist).
Email: XXX Tel: XXXX
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Appendix F: Recruitment Poster – Joint Version
WE ARE RECRUITING FOR A TWO-PART STUDY EXPLORING:
Study 1: Sense of self and gender identity in young females with ASC.
AND
Study 2: Experiences of parents who have a daughter with an autism spectrum condition (ASC).You can express an interest in both you and your daughter participating or select only one
aspect of the research projects.
For more information please contact:
PARTICIPANTS NEEDED!
Would you and/or your daughter like to be
involved in an exciting research project?
Does your daughter have an Autism Spectrum
Condition?
Study 2: Hannah Senior
Trainee Clinical Psychologist
Email: XXX
Study 1: Amber Taylor
Trainee Clinical Psychologist
Email: XXX
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Appendix G: Information Sheet
Title of Study: An investigation of parents’ experiences around seeking and receiving a diagnosis of Autism Spectrum Condition (ASC) for their daughters and the sense made of their child in light of these.
University of Surrey Ref: 1345-PSY-17
Faculty of Health and Medical Sciences Ethics Committee Reference Number: 1345-PSY-17
YOU WILL BE GIVEN A COPY OF THIS INFORMATION SHEET
Researcher: Hannah Senior, Trainee Clinical Psychologist.
Invitation Paragraph
I am a Trainee Clinical Psychologist conducting doctorate level research at the University of Surrey. You have been invited to participate because you are the parent of a daughter aged between 11-16 years who has a diagnosis of Autism Spectrum Condition (ASC).
You should only participate if you want to; choosing not to take part will not disadvantage you in any way. Before you decide whether you want to take part, it is important for you to understand why the research is being done and what your participation will involve. Please take time to read the following information carefully and discuss it with others if you wish. Ask me if there is anything that is not clear or if you would like more information.
What is the purpose of the study?
To date, there has not been a lot of research about the parents’ role in how females with a diagnosis of ASC make sense of themselves. The majority of past research has focused on males with ASC. Many females with ASC have been diagnosed later in life, misdiagnosed or not diagnosed at all. Parents have reported differences in the process of diagnosis for their daughter, such as difficulties getting access to services or issues identifying their daughter’s difficulties in their early life. I am interested in parents’ narratives about this process and the impact this has had on themselves, their daughter and the family system in adapting to this.
The aims of this study are 1. to explore parents’ experiences of seeking and receiving a diagnosis of ASC for their daughter and 2. to examine parents’ thoughts, feelings and beliefs about having a daughter with ASC in light of these experiences and the diagnosis itself.
Why have I been invited to take part?
I am inviting parents of girls between 11-16 years old who have a diagnosis of ASC given by a healthcare professional. I will be approaching parents in your child’s school and other schools in a similar geographical area.
Do I have to take part?
Participation is voluntary. You do not have to take part. You are free to withdraw at any time without giving a reason or being disadvantaged in any way. Furthermore, you will be able to
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withdraw data up to the 31st August 2018 or the time of transcription. You should read this information sheet and if you have any questions you should ask the researcher.
What will happen to me if I take part?
1. If you decide to take part you will be given this information sheet to keep and will be asked to sign a consent form.
2. I will then contact you to organise a pre-interview meeting to go through the study and answer any other questions about the interview. I will then organise a place, date and time convenient for you to complete the interview. I will also give you a copy of the interview questions for you to look over.
3. I will meet you for the interview on the agreed date. If it is too difficult to meet in person we may decide to do the interview via Skype, Zoom or Facetime. The interview will take approximately 45 to 60 minutes and will be at your preferred location (e.g. your child’s school in a quiet room or at home). I will ask you the interview questions whilst using an audio recorder to tape our conversation. You are able to stop the recording at any time or choose not to answer a question. Later, I will write up our conversation and change any identifiable information (i.e. making it confidential). I am able to provide you with a summary of the final report describing the main findings via post or email.
What are the possible benefits and risks of taking part?
The information we will get from the study will help to shape future research about females with ASC and broaden our understanding. This will help others to understand what it is like to have a daughter with ASC, something that has not been researched very much so far. It may provide support for other young people with ASC and their parents who have been through similar experiences. It may also help to inform services and increase access to services, such as health and education services. It may also provide you with a rare opportunity to talk about your experiences which may lead to you learning something new about yourself, your daughter or your family as a whole.
I will provide you with a summary of a final report describing the main findings.
The possible disadvantages to taking part are that the subject matter could potentially be emotive or distressing. I will be giving you the interview questions to look at before we meet for the recorded interview. I hope that this would give parents the opportunity to reflect on their experiences and decide what they were comfortable to talk about. They will be given the researcher’s contact information to ask any questions in the interim.
Will my taking part be kept confidential?
What is said in the interview is regarded strictly confidential and will be held securely until the research is finished. However, should you disclose that you or someone else is at risk, the researcher may need to report this to an appropriate authority. This would usually be discussed with you first.
All information transcribed from these interviews will be anonymised. In reporting on the research findings, I will not reveal the names of any participants or any other identifiable
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information (e.g. school name, geographical location). All project data related to the administration of the project, (e.g. consent form) will be held for at least 6 years and all research data for at least 10 years in accordance with University policy. Your personal data will be held and processed in the strictest confidence, and in accordance with current data protection legislation. Hard files will be kept in my supervisor’s office at the University of Surrey. Audio recordings will be immediately transferred to an encrypted and password protected memory stick where it will be securely stored and only accessible by the researcher. No identifiable data will be accessed by anyone other than me, members of the research team and authorised personal from the University and regulatory authorities for monitoring purposes.
I may ask an external company or research assistant to support me in the transcription of the interviews. This means that they will listen to the audio recordings. Before doing so they would be asked to sign a confidentiality waiver, meaning that they would not be able to discuss the recordings with anyone other than the researcher and the research team.
How is the project being funded?
The research study is being conducted as part of the Faculty of Health and Medical Sciences Doctorate in Clinical Psychology Department. A research budget of £400 has been granted. No external funding has been given. This study has been given a favourable ethical opinion by the Research Ethics Committee.
What will happen to the results of the study?
I will produce a final report summarising the main findings, which will be sent to you if requested. I also plan to disseminate the research findings through publication and conferences.
Who should I contact for further information?
If you have any questions or require more information about this study, please contact me using the following contact details:
Principle Researcher: Hannah Senior
Email: XXX
Mobile: (to be purchased prior to the start of the study)
What if something goes wrong?
If you wish to make a complaint about the conduct of the study you can contact me on the above details. Alternatively you can contact either my primary or secondary research supervisors, or the head of the Doctorate in Clinical Psychology department using the details below for further advice and information:
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Primary Supervisor: Dr Emma WilliamsEmail: XXXTel: XXXAddress: University of Surrey388 Stag Hill,Guildford, Surrey,GU2 7XH.
Secondary Supervisor: Dr Kate GleesonEmail: XXXTel: XXXAddress: University of Surrey388 Stag Hill,Guildford, SurreyGU2 7XH.
Head of Doctorate in Clinical Psychology Department: Dr Mary JohnEmail: XXXTel: XXXAddress: University of SurreyGuildford, SurreyGU2 7XH.
The University has in force the relevant insurance policies which apply to this study. In addition, the Sponsor has made arrangements, in the event of harm where no legal liability arises, for “non-negligent harm” claims. If you wish to complain, or have any concerns about any aspect of the way you have been treated during the course of this study then you should follow the instructions given above.
Thank you for reading this information sheet and for considering taking part in this research.
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Appendix H: Information Sheet – Joint Version
We are inviting you to participate in a research study that has two aspects, focusing on the experiences of young females with an Autism Spectrum Condition (ASC) and parents’ experiences of having a daughter with an ASC. Please read the information below which explains both studies in more detail, including what participation would involve. Once you have read this information sheet you can consent for both yours and your daughter’s participation or either yours OR your daughters participation only.
We will introduce both studies to you and then offer some answers to common questions asked.
Study 1: Sense of Self and Gender Identity in Young Females with an Autism Spectrum Condition.
University of Surrey Reference Number: 1345-PSY-17
Faculty of Health and Medical Sciences Ethics Committee Reference Number: 1345-PSY-17
What is the purpose of the study?
As described above we know there is limited research exploring the direct experiences of females with ASC. I am interested in capturing the female voice, focusing specifically on how young females with ASC understand themselves and what it means to be female. This is because research suggests that women often experience a different set of social pressures compared to men. Often women are expected to be more sociable, interpersonal and relationship focused. I am therefore interested in how this might impact on how a young female with ASC sees themselves and how they might make sense of this.
Why has my child been invited to participate?
Your daughter is being invited to participate because she is aged between 11 and 16years, has a diagnosis of ASC (given by a healthcare professional) and attends mainstream schooling.
What will taking part involve for my child?
1. If you consent for your daughter to take part, then you will be asked to sign the enclosed consent form. To ensure that your daughter is also happy to participate I ask that she expresses her interest by completing the enclosed assent form.
2. Following this, I will arrange a time and place that is convenient to meet your daughter. Ideally this will be either at your home or at your daughter’s school. I will also give your daughter a copy of the questions to look over before we meet.
3. I will meet your daughter at the agreed time and place. The interview will take approximately 30 to 40 minutes. I will ask the interview questions given, and may also ask additional follow up questions not on the list. I will also record each interview on a digital audio recorder. If your daughter does not wish to answer a question then we can move on to the next. The interview, and recorder, can be stopped at any point.
4. During this meeting I will introduce a photography task and give your daughter a disposable camera. Once your daughter has taken as many pictures as she would like, or when she reaches the end of the film, the camera will need to be returned to me. I
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will provide a stamped and self-addressed envelope. The camera will need to be returned 3 weeks from meeting.
5. I will then get the pictures developed and arrange a follow up interview with your daughter. Again, a copy of the questions will be provided. The interview will last approximately 30-40 minutes and will happen at a time and place convenient to you/your daughter. This second interview will focus primarily on the photographs your daughter has taken. She will have a chance to review the photos, and remove any that she does not wish for me to see, prior to me reviewing them with her.
6. I will then write up each interview, changing any identifiable information, and provide you and your daughter with a summary of the findings via post or email. To maintain confidentiality t will not be possible for you to review your daughter’s interviews.
Who is organising this research?
This research is being organised by Amber Taylor, Trainee Clinical Psychologist at the University of Surrey:
Email: XXX
Mobile: (work mobile to be purchased prior to study commencing).
Study 2: An investigation of parents’ experiences around seeking and receiving a diagnosis of Autism Spectrum Condition (ASC) for their daughters and the sense made of their child in light of these.
University of Surrey Reference Number: 1345-PSY-17
Faculty of Health and Medical Sciences Ethics Committee Reference Number: 1345-PSY-17
What is the purpose of the study?
To date, there has not been a lot of research about the parents’ role in how females with a diagnosis of ASC make sense of themselves. The majority of past research has focused on males with ASC. Many females with ASC have been diagnosed later in life, misdiagnosed or not diagnosed at all. Parents have reported differences in the process of diagnosis for their daughter, such as difficulties getting access to services or issues identifying their daughter’s difficulties in their early life. I am interested in parents’ narratives about this process and the impact this has had on themselves, their daughter and the family system in adapting to this.
The aims of this study are 1. to explore parents’ experiences of seeking and receiving a diagnosis of ASC for their daughter and 2. to examine parents’ thoughts, feelings and beliefs about having a daughter with ASC in light of these experiences and the diagnosis itself.
Why have I been invited to participate?
I am inviting parents of girls between 11-16 years old who have a diagnosis of ASC given by a healthcare professional. I will be approaching parents in your child’s school and other schools in a similar geographical area.
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What will taking part involve?
1. If you decide to take part you will be given this information sheet to keep and will be asked to sign a consent form.
2. I will then contact you to organise a pre-interview meeting to go through the study and answer any other questions about the interview. I will organise a place, date and time convenient for you to complete the interview. I will also give you a copy of the interview questions for you to look over.
3. I will meet you for the interview on the agreed date. The interview will take approximately 45 to 60 minutes and will be at your preferred location (e.g. your child’s school in a quiet room or at home). If it is too difficult to meet in person we may decide to do the interview via Skype, Zoom or Facetime. I will ask you the interview questions whilst using an audio recorder to tape our conversation. You are able to stop the recording at any time or choose not to answer a question. Later, I will write up our conversation and change any identifiable information (i.e. making it confidential). I am able to provide you with a summary of the final report describing the main findings via post or email.
Who is organising this research?
This research has been organised by Hannah Senior, Trainee Clinical Psychologist at the University of Surrey.
Email: XXX
Mobile: (to be purchased prior to the start of the study)
Common Questions:
Where can I get more information?
For more information you should contact the researcher(s) related to the study you are interested in via the contact details above. You may also wish to contact the researchers’ supervisors or head of department using the previous information.
Do I/my child have to take part?
Participation is voluntary. You do not have to take part. You are free to withdraw at any time without giving a reason or being disadvantaged in any way. Furthermore, you will be able to withdraw data up to the 31st August 2018 or the time of transcription. You should read this information sheet and if you have any questions you should ask the researcher.
What are the possible benefits and risks of taking part?
The information we will get from the study will help to shape future research about females with ASC and broaden our understanding. This will help others to understand what it is like to be a female with ASC and, as a parent, to have a daughter with ASC, something that has not been researched very much so far. It may provide support for other young people with ASC and their parents who have been through similar experiences. It may also help to inform services and increase access to services, such as health and education services. It may also
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provide you with a rare opportunity to talk about your experiences which may lead to you learning something new about yourself, your daughter or your family as a whole.
The possible disadvantages to taking part are that the subject matter could potentially be emotive or distressing. We will be giving you the interview questions to look at before we meet for the recorded interview. We hope that this would give parents and young people the opportunity to reflect on their experiences and decide what they were comfortable to talk about. They will be given the researcher’s contact information to ask any questions in the interim.
Who has reviewed the studies?
The studies have both been given a favourable ethical opinion by the Faculty of Health and Medical Sciences Ethics Committee.
What if something goes wrong?
If you wish to make a complaint about the conduct of the study you can contact either researchers on the above details. Alternatively, you can contact either the researcher’s primary or secondary research supervisors, or the head of the Doctorate in Clinical Psychology department using the details below for further advice and information:
Primary Supervisor: Dr Emma WilliamsEmail: XXXTel: XXXAddress: University of SurreyGuildford, Surrey,GU2 7XH.
Secondary Supervisor: Dr Kate GleesonEmail: XXXTel: XXXAddress: University of SurreyGuildford, SurreyGU2 7XH.
Head of Doctorate in Clinical Psychology Department: Dr Mary JohnEmail: XXXTel: XXXAddress: University of SurreyGuildford, SurreyGU2 7XH.
The University has in force the relevant insurance policies which apply to this study. In addition, the Sponsor has made arrangements, in the event of harm where no legal liability arises, for “non-negligent harm” claims. If you wish to complain, or have any concerns about any aspect of the way you, or your daughter, have been treated during the course of this study then you should follow the instructions given above.
Thank you for reading this information sheet and for considering participating.
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Appendix I: Consent Form
CONSENT FORM FOR PARTICIPANTS IN RESEARCH STUDIES
Please complete this form after you have read the Information Sheet and/or listened to an explanation about the research.
Title of Study: An investigation of parents’ experiences around seeking and receiving a diagnosis of Autism Spectrum Condition (ASC) for their daughters and the sense made of their child in light of these.
University of Surrey Reference: 1345-PSY-17
Faculty of Health and Medical Sciences Ethics Committee Reference: 1345-PSY-17
Thank you for considering to take part in this study. The person organising the research must explain the project to you before you agree to take part. If you have any questions arising from the Information Sheet or explanation already given to you, please ask the researcher before you decide whether to join in. You will be given a copy of this Consent Form to keep and refer to at any time.
By ticking/initialling each box you are consenting to this element of the study. It will be assumed that un-ticked/un-initialled boxes mean that you DO NOT consent to that part of the study and you may be deemed ineligible for the study.
1. I confirm that I have read and understood the information sheet dated 12.01.2018, Version 2 for the above study. I have had the opportunity to consider the information and asked questions which have been answered satisfactorily.
2. I understand that my participation is voluntary and that I am free to withdraw at any time without giving a reason and without being disadvantaged in any way. Furthermore, I understand that I will be able to withdraw my data up to the 31st August 2018 or the time of transcription.
3. I consent to my interview being audio/video recorded.
4. I consent for either a third-party transcription service or a research assistant to review the audio recordings to assist with transcription. I understand that a confidentiality waiver will be completed prior to this.
Please tick or initial
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5. I consent to the processing of my personal information for the purposes explained to me. I understand that such information will be handled in accordance with the terms of the UK Data Protection Act.
6. I understand that my information may be subject to review by responsible individuals from the University of Surrey and/or regulatory authority for monitoring and audit purposes.
7. I understand that confidentiality and anonymity will be maintained and it will not be possible to identify me in any publications.
8. I agree that the research team may use my anonymised data for future research and understand that any use of identifiable data would be reviewed and approved by a research ethics committee. (In such cases, as with this project, data would not be identifiable in any report).
9. I understand that the information I have submitted will be published as a report and I wish to receive a copy of it.
_________________ ______________ _________________
Name of Participant Date Signature
_________________ ______________ _________________
Name of Researcher Date Signature
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Appendix J: Consent Form – Joint Version
University of Surrey Reference number: 1345-PSY-17
Faculty of Health and Medical Sciences Ethics Committee Reference Number: 1345-PSY-17
As this is a joint project with two aspects you can agree for both yourself and your daughter to
participate, or consent to only one aspect of the study. Please read the following aspects and indicate
below which aspects of the study you would like to voluntarily participate in.
I confirm I have read and understood the information sheet for both studies. I have had the opportunity to consider the information and asked questions which have been answered satisfactorily.
I understand that all personal data relating to participants is held and processed in the strictest confidence, and in accordance with the Data Protection Act (1998). I understand that the interview recordings and photographs will be retained under secure conditions for the duration of the study, and will be destroyed after 10 years.
I understand that my anonymised information may be subject to review by responsible individuals from the University of Surrey and/or regulatory authority for monitoring and audit purposes.
I consent to the research interviews being audio recorded on a digital recorder. I understand that all audio recordings will be kept on a password protected and encrypted memory stick to maintain confidentiality.
I consent, on behalf of my daughter, for either a third-party transcription service or a research assistant to review the audio recordings to assist with transcription. I understand that a confidentiality waiver will be completed prior to this.
I understand that my participation is voluntary and that I am free to withdraw at any time without giving a reason and without being disadvantaged in any way. Furthermore, I understand that I will be able to withdraw my data up to the 31st August 2018 or the time of transcription.
I understand that confidentiality and anonymity will be maintained and it will not be possible to identify me in any publications.
I agree that the research team may use my anonymized data for future research and understand that any use of identifiable data would be reviewed and approved by a research ethics committee. (in such cases, as with this project, data would not be identifiable in any report).
I understand that the information I have submitted will be published as a report and I wish to receive a copy of it.
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I am aware of where to access support should I have any concerns or complaints about the research study.
I understand that if I have any questions about mine or my daughter’s participation at any time I can contact Amber Taylor or Hannah Senior (principal researchers) via the contact details given in the information sheet.
For Study 1: Sense of self and gender identity in young females with an Autism Spectrum Condition. Please consider the following additional points.
I have reviewed the participant information sheet with my daughter and confirm her willingness to participate.
I confirm that if I agree for my daughter to participate I will not receive a copy of the interviews. I will however be able to access a summary of the main findings.
I have been advised about the copyright law pertaining to the photographs and understand that a separate agreement will be sought for the use of the photographs.
I understand that photographs of my daughter or any other person will not feature in any thesis or publication and will not be shown to anyone other than the researcher who conducted the interview.
I confirm that I have read and understood the above and consent to my child participating in Study 1: YES/NO (delete as appropriate)
I confirm I have read, and understood, the above and consent to participating in Study 2:
YES/NO (delete as appropriate)
Name of Child/Young Person: Date: ________
Name of Parent/Guardian: Date: ________
Signature of Parent/Guardian: Date: ________
Appendix K: Interview Schedule
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Title of Study: An investigation of parents’ experiences around seeking and receiving a diagnosis of Autism Spectrum Condition (ASC) for their daughters and the sense made of their child in light of these.
Set up:
Thank you for agreeing to take part in this interview today. As we have already discussed I am conducting research as part of my Doctorate in Clinical Psychology at the University of Surrey. This interview will be recorded and will later be transcribed. Any personal or identifiable information will be changed. You have the right to withdraw at any point during the interview and up until your interview has been transcribed; if there are any questions you would rather not answer please let me know.
Review consent form and reiterate the points about confidentiality, anonymity and right to withdraw.
Remind participant of the purpose of the study and the procedure (including timings). Ask if they have any other questions and offer to give them a copy of the interview schedule if they don’t have theirs with them.
Set up audio recorder.
Introduction:
I would like to start by asking you to tell me about your story of how X came to have autism/ASC. You can follow the questions as we go along (point to the participant’s own copy of the interview schedule).
Warm up:
1. First of all, can you tell me a little bit about your family? (Prompts: How many people? How many children? How old are they? Do the adults in the family work? Cultural background? Does anyone have any interesting hobbies?)
Perception of person with ASC:
2. What is your experience of having a daughter with ASC and has this changed over time?
Prompt questions:
Can you tell me what X is like now? What was she like growing up? Do you remember when and how you first realised your daughter had difficulties?
How old was she? Was anyone else there? Who did you tell? What made you explore this further?
What was your explanation about what was different? Where you looking out for ‘signs’ that she had autism?)
If you have more than one child, were there any differences between X and your other children?
Is she affected in some way during day-to-day activities? At school? In friendships? Socialising? What does she find difficult or easy?
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Diagnosis process:
3. What did you know about autism before the diagnosis was made? Where had you heard about it before?
4. Do you remember what it was like when your daughter was first diagnosed with ASC? How did you feel when they told you? (Was the experience positive or negative? What helped/ didn’t help? Did you have any beliefs about what it meant?)
5. Did you ever think about her differences in relation to her gender and what would be considered ‘normal’ for her age?
6. How, if at all, has the way you’ve made sense of ASC as a parent impacted on your daughter’s sense of self? Do you have any particular beliefs about having a daughter with ASC? (Have these changed over time? Is your daughter aware of her diagnosis and what it means? Do you discuss ASC and, if so, how often? In what situations might you discuss it? Do you think this impacts on how she perceives herself as an individual, in friendships and in social situations?)
7. Do you have any particular hopes or fears about the future for your daughter? (Support? Future living situation? Education? Employment?)
End of interview: Thank you for taking part. Do you have any questions or reflections about the interview?
Appendix L: Self-reflexivity Account
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As IPA is an inductive approach, meaning stems from the data to build on knowledge and theory.
There is recognition that despite this, my beliefs, assumptions and experiences will have influenced
the study design, data collection and analysis (Eatough & Smith, 2008). Therefore, reflexivity is
important in considering the impact of the researcher on the research process (Yardley, 2000).
Self-reflexive statement: I am a twenty-eight year old White-British female working as a Trainee
Clinical Psychologist. Prior to this, I worked as a Seasonal Support Worker with young people who
had complex needs, such as intellectual disability, ASC, physical disability and challenging
behaviour. It was during this time that I developed a passion for working with young people with
additional needs and their families. Following my undergraduate degree in psychology, I went on to
complete an MSc in Assessment and Intervention of Intellectual and Developmental Disabilities at the
Tizard Centre, University of Kent. This included two clinical placements in relevant services. I went
on to work as an Assistant Psychologist in CAMHS, continuing with my passion in this area by
contributing to the Autism Assessment Clinic, and later joining a Specialist CAMHS team for
intellectual disabilities.
Reflecting on the above, I recognise that I began this research project with preconceived ideas of ASC
due to personal and professional experiences. Although this was positive in terms of my passion for
conducting the study and my starting knowledge base, I was aware that I could have made
assumptions based on this during the process of the research. It was therefore important to perform
credibility checks and use supervision appropriately to make sure I was not transferring my
unacknowledged beliefs onto the research process.
Impact of the self on the study and subsequent revisions made
Development of the interview schedule
The initial interview schedule was quite focused on what I was hoping to know more about or areas I
felt were important. Following discussions with my research supervisors, both whom are experienced
IPA researchers I was challenged on this. I was encouraged to allow participants to tell their story in
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the way they wanted to. I was initially unsure about allowing the first question to be so open to
interpretation, but this ended up being really beneficial in producing rich and meaningful data.
Analysis
When I first began analysing the data, I viewed it through my own lens of experience. As I was aware
of this, I would check the initial themes against the data and ask my colleagues in qualitative
workshops to do the same. I also asked for one of my transcripts to be checked by my research
supervisors, who challenged me on a few occasions for making assumptions as a clinician working in
mental health services as opposed to a researcher making connections based on the knowledge from
the data. This was particularly pertinent when analysing text which included discussion about mental
health services because of my previous experience working in CAMHS and in ASC assessment
teams. I managed this by continuing to return to the data when formulating and reformulating themes
in order to assess the validity of my claims and by seeking guidance from others. I endeavoured to
maintain a high level of transparency during the sharing of data, analysis and in the reporting of the
study with supervisors and other researchers.
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Appendix M: Examples of Coded Transcripts
The following audit trails present stages of analysis for two interview extracts. They demonstrate how themes developed from the transcript extract to initial responses, to emergent and superordinate themes.
Table 3: Extract from Jackie’s interview transcript
Initial responses Transcript extract Emergent themes
Validation of diagnosis.
Fight for diagnosis.
Emotional reaction to diagnosisDistraught, upset for three months.
Compared reaction to grief cycle.
Emotional reaction, sadness.
End point, had to pull self together.“Just have to”
Emphasis on sadness
Thinking about consequences of diagnosis
I really felt validated, but actually despite the fact that I'd been fighting for the diagnosis, it really knocked me for six because I was absolutely... I had three months, I was really quite distraught. I think it was a slight kind of bereavement type cycle I went through. I cried every day for three months, and then it got to the end and I just thought I just have to pull myself together. I just have to. I just had to get out despite... I was just very, very sad about what it meant and the outcomes and things like that.
Diagnosis as validation and relief following struggle.
Grief cycle: emotional reaction to sought after diagnosis and adjustment period.
Extract of colour coded list of initial responses:
Validation of diagnosis (182). Fight for diagnosis (183). Emotional reaction to diagnosis (183). Distraught following diagnosis (184). Compared reaction to grief cycle (185). Emotional reaction, sadness (186). End point, had to pull self together (187). “Just have to” (188). Emphasis on sadness (189). Thinking about consequences of diagnosis (189). Put support in place (191). Helpful support from OT (194). DCD course (195). Private psychotherapy (197). Private SALT sourced by mum (198). Research guided interventions (199). Lucky to be able to afford private, not able to access as many services via NHS (201). Established support didn’t help (202). Lived with issues (205).
Extract of initial groupings of responses in ‘JOURNEY’ category:
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Extract of clustering of responses in ‘Journey to gain diagnosis and the negative impact of additional mental health problems’ category with most relevant quotation line numbers:
Transformation of the theme over time:
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Emergent themes: Diagnosis as validation and relief following struggle. Grief cycle: emotional reaction to sought after diagnosis and adjustment period.
Superordinate theme: Journey to gain diagnosis and the negative impact of additional mental health problems.
Revised emergent theme: Emotional impact and grief process following daughter’s initial diagnosis.
Revised superordinate theme: Parenting Journey – from a position of powerlessness to influence.
Final emergent theme: Relief and grief.
Final superordinate theme: Parenting Journey – from a position of powerlessness to expert by experience.
Table 4: Extract from Grace’s interview transcript
Initial responses Transcript extract Emergent themes
Unsure of ASC origin.
Emphasis on problems making friends in Primary school.Problems keeping friends.Disagreements with peers.Hitting others & cutting hair –challenging behaviour.
Asking for help from school to support daughter to make & keep friendships.
Okay. We don’t know how she came to have autism. When she was very young at primary school, she had major, major problems making friends, keeping friends, always falling out, quite often hitting other children, cutting other children’s hair. So, I’ve been asking school for years and years and years for help with Lola, to help her, to support her to make friends and keep friendships and that kind of thing.
Difficulties forming and maintaining appropriate friendships.
Asking for help with daughters’ friendship difficulties
Extract of colour coded list of initial responses:
Unsure about ASC origin (18). Emphasis on problems making friends in Primary School (19). Problems keeping friends (20). Disagreements with peers (20). Hitting others & cutting hair – challenging behaviour (20). Asking for help from school to support daughter to make & keep friendships (22). School isolated L as a way of managing her behaviour (25). School unwilling to support her needs (27). L happy to be separate from others (30).
Extract of initial groupings of responses in ‘Impact of daughters’ difficulties in social interaction/ friendship issues’ category:
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Extract of clustering of responses in ‘Impact of daughters’ difficulties in social interaction’ category with most relevant quotation line numbers:
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Transformation of the theme over time:
Emergent themes: Difficulties forming and maintaining appropriate friendships. Asking for
help with daughters’ friendship difficulties.
Superordinate theme: Impact of daughters’ difficulties in social interaction.
Revised emergent theme: Difficulties forming and maintaining friendships.
Revised superordinate theme: Societal expectations influence on social interaction
difficulties.
Final emergent theme: Difficulties forming and maintaining friendships as an early warning
sign.
Final superordinate theme: Social interaction is more difficult to navigate for girls.
Appendix N: Critical Appraisal using Yardley’s (2000) Guidelines
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Sensitivity to context. This principle was demonstrated by outlining the existing literature and theory
in the literature review and in the introduction section. The study was sensitive to the socio-cultural
context by describing the participants in the methods section. Sensitivity towards the material
gathered was ensured through the researcher’s open and non-judgemental responses and the
preservation of the participants’ voices and point of view by conducting an in-depth analysis.
Verbatim extracts were used to demonstrate this further.
Commitment and rigour. Commitment was demonstrated through the prolonged and in-depth
engagement with the topic area. Participants were considered throughout the recruitment and data
collection stages, as well as care being taken over the transcription and analysis process (see
Appendix M for audit trail of analysis). The commitment and rigour of using IPA was impacted by
my limited experience of using it in lower level research projects. I attempted to manage this by
utilising supervision and training opportunities of developing my skills in this area, such as lectures,
qualitative focus groups, peer supervision and additional workshops. Supervision also attended to the
development of the interview question and ensured that this related to the research question. My
supervisors and peers conducted credibility checks on each stage of the development of themes for a
sample of transcription. This was helpful to highlight the occasions where my assumptions had
influenced the validity of the data collection or analysis, helping to reduce this and ensure the validity
of the data.
Transparency and coherence. This was demonstrated by clearly describing the stages of the
research process in the method section and the process of analysis in both the method section and in
the audit trail (Appendix M). A self-reflexivity account was also provided to be transparent about the
potential influence of personal assumptions and experiences (Appendix L). Coherence between the
research carried out and the underlying theoretical assumptions of IPA were considered during the
development of the interview schedule, the analysis, workshops, readings and supervision. My
epistemological assumptions and ontological position aligned with IPA. The epistemology being
social constructionist, i.e. a critical stance towards how we see the world and ourselves which are
developed through social processes and hermeneutics. This acknowledges the interpretative element
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of the researchers’ engagement with transcripts. The ontological position was a middle point between
realism and relativism, and has an idiographic emphasis.
Impact and importance. The important findings and contribution to knowledge were highlighted in
the discussion section, as well as its clinical relevance and implications.
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Part 2:
Major Research Project Literature Review
A Review of Parents’ Experiences of Having a Daughter with a Diagnosis of Autism
Spectrum Condition
Word Count: 7994
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Abstract
Research into the prevalence of Autism Spectrum Conditions (ASC) often reports males as
being more frequently diagnosed compared with females. Many researchers in the field
suggest females may be incorrectly diagnosed or missed altogether due to gender differences
in their ASC symptomology and expression. Parents are fundamental in acknowledging
difficulties and overseeing the diagnosis process, which often occurs at a later stage in girls’
development compared to boys. This article reviews the current literature on parents’
experiences of having a daughter with ASC. A systematic search was conducted which
resulted in nine articles being identified as appropriate for the review, based on inclusion and
exclusion criteria. Many articles highlighted parents’ difficulties in obtaining a diagnosis for
their daughter and accessing services. There were inconsistencies in parents’ understanding
of the girls’ social difficulties and how successfully they were able to hide them. Problems in
maintaining friendships, vulnerability, self-care issues and how these impacted self-esteem
were also common themes. Typically, parents described a process similar to grief involving a
degree of adaptation to the parent-daughter relationship following an ASC diagnosis.
Limitations in the articles were acknowledged and discussed within the context of currently
limited research in this area. A recommendation is made for further exploratory qualitative
research which adds to and advances the current research, particularly to assist parents and
services in the early identification of females with ASC to inform more timely and
appropriate diagnoses and provide more appropriate support.
Key words: Autism, Autism Spectrum Condition, High Functioning, Females, Girls, Gender,
Parents.
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Introduction
The literature suggests that the prevalence of Autism Spectrum Conditions (ASC2) is
substantially higher in males than females, with a ratio of 4:1 (Chakrabarti & Fombonne,
2001; Fombonne, 2005). Various explanations have been offered for this gender imbalance
but the evidence remains inconclusive. One suggestion is that ASC is not diagnosed in girls,
or is diagnosed at a later stage, distorting the prevalence rates (Begeer et al., 2013). Given
that parents play a crucial role in setting the process of diagnosis in motion, it may be helpful
to consider parents’ experiences of raising girls with ASC in an attempt to identify insights
they offer into the gender imbalance in the identification and diagnosis of ASC.
1. Defining Autism Spectrum Disorders
ASC, also known as Autism Spectrum Disorder (ASD), is a lifelong, neurodevelopmental
condition characterised by difficulties with social communication and social reciprocity,
repetitive behaviour and sensory processing issues (American Psychiatric Association, 2013).
In the Diagnostic Statistical Manual-5 (DSM-V) (American Psychiatric Association, 2013),
previous categories of Autistic Disorder, Asperger’s, Childhood Disintegrative Disorder and
Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS) were collapsed into
the umbrella term ASC. The purpose was to highlight ASC as representing a continuum of
similarly categorised difficulties, emphasising the individual nature of the condition (King,
Navot, Bernier & Webb, 2014). Although there has been support for the new categorisation
system, many critics state there is too great a distinction between low-functioning autism and
Asperger’s for them to be categorised in the same way (King et al., 2014). Another critique is
that the diagnosis system was based primarily on research with male participants. This has
2 For the purposes of this review, the author has predominantly used the term Autism Spectrum Condition (ASC) rather than Autism Spectrum Disorder (ASD), as this was considered a less pathological term that is preferred by members of the community (Bargiela, Stewart & Mandy, 2016).
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implications for diagnosing females, because current criteria may not fully consider the
manifestation of ASC in females.
2. Sex/Gender Prevalence of ASC
As previously stated, ASC is four times more prevalent in the male population compared to
females (Fombonne, 2005). The ratio reportedly reduced to 2:1 when individuals had lower
intellectual functioning (Fombonne, 2005). The difference in prevalence appears to be more
apparent for individuals who don’t have an Intellectual Disability (ID) as well as ASC (Scott,
Baron-Cohen, Bolton & Brayne, 2002; Fombonne, 2003). Evidence found females without
ID were diagnosed significantly later than males with the same condition (Begeer et al.,
2013).
3. Possible Explanations for the Sex/Gender Difference
Hypotheses have been proposed to consider the sex/gender differences in ASC. The first
suggests the gender difference can be explained by a biological difference (Baron-Cohen,
2002; Baron-Cohen, Leslie & Frith, 1985). The second suggests ASC is expressed differently
in females, resulting in fewer females being diagnosed or being mis-diagnosed using the
current diagnostic tools (Giarelli et al., 2010).
A difference in brain structure
One key theory, the “Extreme Male Brain” (Baron-Cohen, 2002), suggested cognitive
features associated more with males, e.g. ‘systemising’, were more frequent in people who
had a diagnosis of ASC, suggesting that people with ASC may have similar cognitive skills to
males, regardless of their gender (Baron-Cohen, 2002). Cognitive features associated more
with females, e.g. empathising, were less frequent in people with ASC. There was supporting
evidence for this using brain scans which suggested people with ASC were closer to the
stereotypical male brain in terms of areas related to systemising compared to neuro-typical
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males and females (Baron-Cohen, 2009). Another theory which suggested individuals with
ASC were less adept at being empathic related to the concept of Theory of Mind (Baron-
Cohen et al., 1985). Theory of Mind is the ability to attribute mental states to oneself and to
others and being able to understand these different mental states. Research found that
individuals with ASC had deficits in aspects of Theory of Mind and were described as having
‘mind-blindness’, resulting in a perceived lack of empathy towards others (Lombardo &
Baron-Cohen, 2011). Although recent research has moved away from the more ‘masculine’
theories mentioned, which suggested people with ASC have similar brain structure and
cognitive skills to males, they may have contributed to the societal view of ASC as a ‘male’
condition (Hendrickx, 2015).
Females less likely to be diagnosed or more likely to be mis-diagnosed
It is important to acknowledge the influence of previous theories and research on the public
understanding of ASC (Kopp & Gillberg, 1992; Little, Wallisch, Salley & Jamison, 2017).
Focus on the male experience and symptomology in the development of diagnostic criteria
may have resulted in a lack of sensitivity to, and understanding of, the female experience (Lai
& Baron-Cohen, 2015). This in turn has contributed to a delay in the diagnosis of ASC in this
population. Previous studies found that girls were significantly less likely to receive an ASC
diagnosis compared to boys due to gender expectations and stereotyping by professionals and
parents (Russell, Steer & Golding, 2011; Little et al., 2017). This highlighted the influence of
parents’ and professionals’ perceptions of a child’s difficulties on the diagnosis process. One
study found some professionals were more likely to diagnose females with a condition other
than ASC (i.e. misdiagnosis), despite both sexes displaying markers associated with ASC at
similar ages, such as language and developmental delays (Giarelli et al., 2010). There may be
other factors relating to females expressing symptomology in different ways or at different
points in their developmental trajectory which current diagnostic instruments are not
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sufficiently sensitive to reveal (Rivet & Matson, 2011). Females with ASC were more likely
to be identified in their adolescence, which is later than the majority of males (Solomon,
Miller, Taylor, Hinshaw & Carter, 2012). In light of such evidence, it has been suggested a
sex-specific diagnostic system is needed to reflect the true sex ratio in autism (Lai et al.,
2011; Attwood, 2013; cited in Hendrickx, 2015), as many people believe the current ratio of
one female for every four males underrepresents their relative incidence.
4. Possible Gender Differences in Individuals with ASC
There are likely to be gender differences in the presentation of ASC due to the diversity
existing in the typically-developing population. Males and females with ASC are unlikely to
behave in exactly the same way, much like neuro-typical males and females are unlikely to
behave in the same way (Ruigrok et al., 2014).
Socialisation of gender
Although initially biologically determined, many aspects of gender and gendered behaviour
are social constructs which contribute to identity formation (Carter, 2014). The social
construction of what is or is not acceptable behaviour related to gender may be a factor in
some females’ traits being missed. Dean, Harwood and Kasari (2017) compared how
typically developing children interacted in the school playground compared with boys and
girls with ASC. They reported that social exclusion was more easily observed in boys
compared to girls with ASC. Boys’ play was more structured, resulting in males with ASC
leaving the social group and becoming obviously solitary, whereas females with ASC tended
to stay in close proximity to social groups, masking social difficulties from observers (Dean
et al., 2017). Other research noted males with ASC were often more disruptive in school
compared to females, making teachers more alert to male needs (Hiller, Young & Weber,
2014). Females with ASC were more likely to internalise symptoms of distress (e.g. low
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mood or withdrawal) in contrast with more externalised behaviours observed in males (e.g.
repetitive or aggressive behaviour) (Howlin & Moss, 2012; Solomon et al., 2012). Parents of
daughters with ASC were more likely to attribute their child’s behaviour to being ‘just shy’,
due to the internalised distress and difficulties managing social interactions (Kreiser & White,
2014). This related to gender being partially socially constructed; in this case ‘shyness’ was
considered normal and acceptable for girls (Lorber, 1994).
Gender differences in diagnostic features of ASC
People with ASC have difficulties associated with social interaction. Research exploring the
distinctions between genders in this area has resulted in mixed findings. Many researchers
suggested that females, similarly to males, have difficulties in social communication which
can have a detrimental impact on their ability to make and maintain relationships (American
Psychiatric Association, 2013; Kanfiszer, Davies & Collins, 2017). In contrast, some studies
identified differences in individuals’ ability to interact socially based on gender, suggesting
females were more adept at social communication as a result of adopting compensatory skills,
termed ‘masking’ or ‘camouflaging’ (Attwood, 2007; Gould & Ashton-Smith, 2011). Some
research suggested females were more able to learn compensatory strategies and were more
motivated to use them compared with males (Lai et al., 2011). The way females with ASC
navigated their social world and made sense of relationships may be impacted by the way
they have been conditioned to behave, based on societal gender expectations (Lorber, 1994).
This may contribute to the difference in motivation for developing social interaction
strategies between girls and boys, as girls are expected to participate in more complex social
interactions, particularly in adolescence (Erikson, 1950; Lorber, 1994). This may also have an
effect on the formation of their self-identity, as this is developed through an understanding of
oneself and others (Erikson, 1950).
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Another area of difference identified was young people’s special interests. Research has
highlighted sex differences in children’s play, suggesting girls with ASC do not have the
same stereotypical, rigid interests as boys (Carter et al., 2007). Gould and Ashton-Smith
(2011) found that females were more likely than males to have gender-fitting special
interests, such as reading or fantasy worlds. These types of interests may not be perceived as
rigid or an ASC trait because they are shared with some neuro-typical females.
5. Parental Experiences of Having a Daughter with ASC
Parents and carers are often the first observers of their child’s difficulties. They are thus
influential in gaining access to services and providing information resulting in a diagnosis.
This is important in understanding why ASC is less likely to be reported in girls compared
with boys.
Theories related to parent-child relationships
Early theories of ASC focused on the parent-child relationship, suggesting a child developed
ASC due to a lack of parental warmth (Kanner, 1949). Further research by Bettelheim (1967)
stated mothers of children with ASC were distant, cold and rejecting. These theories have
since been discredited as a cause for the development of ASC, and consequently there have
been few studies of the parent-child relationship, in particular parents of girls with ASC.
Although it has been acknowledged there is unlikely to be a causal link between the parent-
child relationship and the development of ASC, parents are crucial in the early identification
of their daughters’ difficulties and in reporting these difficulties to professionals, and
therefore may offer an explanation for a difference in identification and diagnosis.
Parental and family experiences
ASC as a label is somewhat ambiguous due to the lack of clarity in diagnosis, problems
predicting outcomes, day-to-day variability in functioning, individual appearance as ‘healthy’
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and loss of relationships for family members and the individual (O’Brien, 2007). This results
in its construction by medical, societal and family discourses, allowing meaning to be formed
in different ways (Grinker & Cho, 2013; Huws & Jones, 2010). Despite having a sense of
something being different, many parents of girls were assumed to be ‘over-anxious’ or
‘imagining things’ by others (Hendrickx, 2015). In contrast, some parents stated they had
fewer concerns about their daughter compared with parents of boys with ASC (Little et al.,
2017). Despite the presence or absence of early indicators, many parents and families
reported feeling ‘shocked’ when their child received an ASC diagnosis, resulting in a process
similar to grief (Norton & Drew, 1994; Hendrickx, 2015). Parents of a child with ASC
reported higher levels of stress and poorer wellbeing compared to parents of young people
without ASC (Gray, 2002). However, as much of this research was not gender specific, it was
unclear whether the ‘grieving’ process was consistent for families with a daughter with ASC.
6. Aims and Rationale
The previous research into ASC has largely focused on male symptomology and experience,
with a corresponding lack of attention to female symptomology. Research has suggested
potential difficulties in gaining a diagnosis and getting support from services, which could be
different for males and females due to gender differences (Gould & Ashton-Smith, 2011;
Solomon et al., 2012; Kreiser & White, 2014). Adolescence was identified as a critical time
for young females with ASC because of increasing pressures to be sociable and to become
more self-aware, something people with ASC find extremely difficult (American Psychiatric
Association, 2013; Kanfiszer et al., 2017). Furthermore, the research into parent-child
relationships and parents’ experiences of having a daughter with ASC was extremely limited.
We need to have a better understanding of the current research about parents’ experiences of
raising girls with ASC as a first step in helping us to establish whether or not there is a
gender-related difference, or whether there is a difference in the identification and diagnosis
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of girls related to how parents report ASC traits. This literature review aimed to synthesise
current research evidence about parents’ perception of autism relevant symptoms by asking
the research question “What are parents’ experiences of having a daughter with ASC?” It
was hoped this would help to develop a broader understanding of the female experience from
a parental perspective to inform theoretical and clinical practice.
Method
Using the search terms identified during literature scoping (see table 1), an
electronic search of published reports of parents’ experiences of having a daughter with ASC
was conducted using the Psychology and Behavioral Sciences Collection database (EBSCO
host) with the following databases: British Education Index, Child Development &
Adolescent Studies, CINAHL, ERIC, MEDLINE, PsycARTICLES, Psychology and
Behavioral Sciences Collection and PsycINFO.
Table 1. Literature review search terms for electronic database search (EBSCO host)
Search no.
Search terms
1 (TI Title): Autis* OR ASD OR ASC OR Asperger* OR Asperger* Syndrome
2 (TI Title): Parent* OR caregiver* OR mother* OR father* OR guardian*
3 (TI Title): Experience* OR perspective* OR view* OR perception* OR stor* OR understanding* OR report* OR interview* OR grounded OR qualitative OR thematic OR theme* OR focus group* OR subjective*
4 (AB Abstract): Girl* OR wom* OR female* OR young wom*
5 1 AND 2 AND 3 AND 4
6 Limit 5 to last 18 years (1 January 2000 – June 2018)
7 Limit 6 to Scholarly (peer reviewed) journals
8 Limit 7 to English Language
9 Removal of duplicates from 8
Inclusion/ exclusion criteria
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Studies were included if they involved parents of female adolescents (11 – 18 year olds) who
had a diagnosis of high functioning ASC. Studies involving male and female adolescents
were considered if there was a generous sample of females and the perspectives of the parents
were distinguishable by the gender of the child. Studies were excluded if the adolescents did
not have a formal diagnosis of ASC or had an intellectual disability. Both qualitative and
quantitative methods were considered. Articles were limited by the year of publication (2000-
2017), the type of publication (peer-reviewed), availability (full text) and language (English).
An account of the full inclusion and exclusion criteria used was recorded (table 2).
Table 2. Inclusion and exclusion criteria for the literature search
Included ExcludedPopulation Parents of adolescents (11-18 years
old).Parents of young children (under 11) or adults (over 18 years).
Parents of adolescents with a diagnosis of high functioning ASC.
Parents of adolescents who have autistic traits but no formal diagnosis. Adolescents with an intellectual disability.
Studies involving female adolescents. Female & male adolescents if females are at least half of the population & parental view of females can be distinguished.
Studies involving parents of males only or if the majority of the adolescent population is male.
Parental & carer experiences or perspectives
Teacher, professional or young people’s experiences or perspectives
Exposure Any method which gathers information about perspectives & experiences (self-reports)
Studies that do not gather participants’ perspectives or personal experience
Outcome Parent or carer reported experience in relation to having a daughter with ASC via qualitative methods
Adolescent/teacher/professional reported experience in relation to being or being attached to an individual with ASC
Quantitative methods if they focus on parent experience or perception of having a daughter with ASC.
Quantitative methods not focusing on parental experience of having a daughter with ASC.
Mixed methods related to self-reporting & aspects of experience (parents).
Mixed methods related to aspects other than that of a parent of a daughter with ASC.
Studies Full text available Full text not availableStudies written in English Studies written in languages other than
EnglishPrimary collection of qualitative data Studies that do not use primary data
Search results
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The preferred reporting items for systematic reviews and meta-analyses (PRISMA)
guidelines (Moher, Liberati, Tetzlaff & Altman, 2009) were used to carry out this literature
review (figure 1). The search strategies included an exploration using key-words on Google
Scholar, a broad range search of electronic databases using the final search terms (table 1)
and examination of identified articles’ reference lists. A total of thirty-five studies were
identified through the electronic database searches, as well as two additional papers found
during the initial exploration of the literature on Google Scholar, following the removal of
duplicates. Following the PRISMA guidelines (figure 1), the identified articles underwent a
three-stage screening process. The titles were screened to determine whether the article met
the inclusion criteria (table 2). Of the thirty-five studies initially identified, twenty-nine were
selected for the second stage of screening, including those that provided insufficient
information in the title. Those twenty-nine articles were then considered based on the
information in the abstract. After reviewing the abstracts, nineteen articles were deemed
suitable, based on the eligibility criteria. Following a third level of screening of the nineteen
full-text articles, a total of nine studies were finally selected for the literature review (four
quantitative studies, four qualitative studies and one mixed method study).
Figure 1. The Preferred Reporting Items for Systematic Reviews and Meta-analyses
(PRISMA) guidelines used to review the literature base represented in a flow diagram
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Characteristics of included articles
There were a total of 976 participants, although the number of target group participants was
extremely variable across the different studies. In the quantitative articles, the largest overall
sample size was 236 parents, 98 of whom were parents of girls (Ormond, Brownlow, Garnett,
Rynkiewicz & Attwood 2018) and the smallest overall sample size was 101, 25 of whom
were parents of girls (Head, McGillivray & Stokes, 2014). For the qualitative studies, the
largest sample size was 40 parents of females (Mademtzi, Sing, Shic & Koenig, 2017) and
the smallest sample size was 8, 5 of which were the target sample (Cridland, Jones, Caputi &
Magee, 2014). The mixed methods design adopted by Sutherland, Hodge, Bruck, Costley and
Klieve (2017) used the largest sample size for the target group of 171 participants. The
majority of the participants were mothers, although fathers and non-biological parents were
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included in some of the articles. Four articles were published in Australia, three in the USA,
one in Ireland and one in Poland.
Of the four qualitative studies, three of the articles used semi-structured interviews (Cridland
et al., 2014; Navot, Jorgenson & Webb, 2017; Rabitte, Prendeville & Kinsella, 2017) to
collect data. Two of these analysed interview transcripts using Interpretative
Phenomenological Analysis (IPA) (Cridland et al., 2014; Rabitte et al., 2017) and one used
Naturistic Inquiry (Navot et al., 2017). The remaining qualitative article employed focus
groups as the method of data collection and thematic analysis to analyse the findings
(Mademtzi et al., 2017).
All four quantitative studies used questionnaires to collect data but differed in how the data
was analysed (Head et al., 2014; Zamora, Harley, Green, Smith & Kipke, 2014; Pisula et al.,
2017; Ormond et al., 2018). Head et al., (2014) conducted two-way factorial analyses of
variance (ANOVA) and independent samples t-tests. Ormond et al. (2018) used Principal
Component Analysis (PCA) and between groups analysis of variance (ANOVA). Pisula et al.
(2017) used two-factor analysis of variance (ANOVA). Zamora et al. (2014) analysed data
related to the research question using independent-sample t-tests and Chi-square analyses.
The mixed-methods study analysed the quantitative data using logistic regression and odds
ratios. The qualitative data was analysed using thematic analysis (Sutherland et al., 2017).
Quality assessment
Although there are quality assessment tools that incorporate criteria for both qualitative and
quantitative methods, Elliott, Fischer and Rennie (1999) argue that a more focused approach
yields a more robust evaluation that is paradigm specific. In this literature review, the criteria
used to evaluate qualitative studies derived from Yardley (2000), which considered four
characteristics of good qualitative research; “Sensitivity to context”, “Commitment and
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rigour”, “Transparency and coherence” and “Impact and importance”. Each paper was
scrutinised in terms of its ability to incorporate these four characteristics (see table 3).
The quantitative articles were evaluated using the Effective Public Health Practice Project
(EPHPP) Quality Assessment Tool for Quantitative Studies (EPHPP, 2007). This assessment
tool rated six main characteristics of quantitative research; “Selection bias”, “Study design”,
“Confounders”, “Blinding”, “Data collection method” and “Withdrawals and drop-outs”.
“Intervention integrity” and “Analyses” were also areas to consider but were not included in
the main component ratings as the focus of the studies was on parents’ experiences and did
not measure an intervention. For each of the quantitative articles, the six main characteristics
were rated as “Strong”, “Moderate” or “Weak”, followed by a global rating for the paper (see
table 3) and the statistical findings were summarised (see table 4). The mixed methods study
by Sutherland et al., (2017) was evaluated using both the qualitative and quantitative
guidelines for the two separate sets of data.
Critical appraisal
Using Yardley (2000) as a guide, the methodological issues of the qualitative articles were
considered. All four qualitative studies and the mixed methods study used populations
recruited from Western countries, possibly due to the requirement of articles to use the
English language (Cridland et al., 2014; Mademtzi et al., 2017; Navot et al., 2017; Rabitte et
al., 2017; Sutherland et al., 2017). This was a strength in terms of the transferability of
findings between studies. Although this may allow good insight to be gained into a particular
population, this also suggested the research may be limited in other cultures. The findings
relevant to the original research question were generally coherent, although their limited
research base presented some difficulties in terms of sensitivity to context. The impact and
importance of the findings were highlighted in all but one of the studies (Cridland et al.,
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2014; Mademtzi et al., 2017; Rabitte et al., 2017; Sutherland et al., 2017). The qualitative
articles were generally limited to mothers; only one study noted that a father had participated
(Rabitte et al., 2017). There were differences in the age ranges of the daughters, making it
difficult to compare their experiences. This was particularly problematic in Mademtzi et al.
(2017), which used a large age range covering childhood, adolescence and adulthood (4-29
years).
The quantitative articles and quantitative data in the mixed methods study were evaluated
using the guidelines by the Effective Public Health Practice Project (EPHPP) (2007) to
consider the methodological strengths and weaknesses. Similarly to the qualitative studies, all
of the studies used Western populations considered as generally homogenous (Head et al.,
2014; Zamora et al., 2014; Pisula et al., 2017; Sutherland et al., 2017; Ormond et al., 2018).
Another strength was that all of the studies including quantitative data used a male
comparison group to consider differences and similarities based on gender. Additionally, two
of the studies included comparison groups of typically developing young people of both
genders (Head et al., 2014; Pisula et al., 2017). A weakness of two of the studies was that
they modified questionnaires without clearly validating them (Head et al., 2014; Ormond et
al., 2018). Some of the quantitative studies were limited in how they reported the analysis of
results or significant findings (Sutherland et al., 2017; Pisula et al., 2017), and one article
reported significant findings qualitatively which contradicted the statistical information
presented (Zamora et al., 2014). Similarly to the qualitative articles, the quantitative studies
prioritised the involvement of mothers over fathers, or did not clearly state the demographics
of the parent sample.
Findings
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The articles were synthesised by determining the outcomes of each study and grouping them
thematically. There were four key findings in the literature: (a) Difficulties in getting a
diagnosis and accessing services (b) Daughters’ ability to ‘mask’ social difficulties,
friendship issues and potential vulnerability (c) Daughters’ self-care difficulties and impact
on self-esteem (d) Development of parent-daughter relationship.
(a) Difficulties in getting a diagnosis and accessing services
The literature review identified parents’ difficulties in relation to diagnosis. This included
limited access to services, a lack of awareness of symptoms by services and parents
themselves not recognising symptoms. This led to parents feeling guilty for not getting help
for their child more quickly.
Four qualitative articles and one quantitative article discussed parents’ difficulties getting an
ASC diagnosis for their daughter. Firstly, parents felt unable to access services when they
became aware of traits, preventing an opportunity for early diagnosis (Cridland et al., 2014;
Mademtzi et al., 2017; Navot et al., 2017; Rabitte et al., 2017). One parent stated “we lost ten
years” and another expressed feelings of guilt for not understanding their daughter’s
problems sooner; “I didn’t listen to her” (Navot et al., 2017). Other parents were unaware of
early signs until much later in their daughters’ development, but saw differences in behaviour
with hindsight, leading to further guilt; “why didn’t I see this before?” (Rabitte et al., 2017).
Many parents experienced scepticism about their daughters’ ASC traits from others,
including education and health professionals. This seemed to be connected to gender
stereotypes and expectations of ASC being a disorder for males; “I remember her saying that
this is usually a boys’ thing” (Navot et al., 2017). Some parents felt there was a lack of
information about ASC in girls (Navot et al., 2017). Although it was a strength that the above
articles focused on parental experience, it was difficult to draw conclusions about gender
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specific experiences. It was unclear what experiences were solely related to having a daughter
with ASC and what experiences were also applicable to boys.
Zamora et al.’s (2014) questionnaire study focused on how parents’ ability to access services
impacted on their perceived stress. There were no significant gender differences in the
provision of services and symptomology reported by parents. These findings suggested there
was no difference in accessing services for parents of males and females with ASC.
It should be noted the participants involved were recruited via ASC specific groups, social
media or previous research projects. The perspectives may be similar as they come from a
comparable group in terms of their motivation to participate and socio-economic status,
resulting in contrasting points of view being missed. The methodology of the studies may
also contribute as they did not aim to access the quality of parents’ experiences in depth.
(b) Daughters’ ability to ‘mask’ social difficulties, friendship issues and potential
vulnerability.
With two exceptions, the articles discussed parental concerns regarding their daughters’
impaired social skills and the impact this had on relationships (Cridland et al., 2014; Head et
al., 2014; Mademtzi et al., 2017; Navot et al., 2017; Rabitte et al., 2017; Ormond et al., 2018;
Sutherland et al., 2017). Impaired social skills and increasing social demands were
acknowledged by a number of parents (Mademtzi et al., 2017; Navot et al., 2017). Parents felt
the increase in social demands during adolescence was especially difficult for girls because
there were more expectations for them to be sociable; “expectations are different for boys
and girls and that worries me a lot. She is expected to be social …” (Navot et al., 2017).
Although Pisula et al. (2017) reported young people with ASC had problems in social
functioning and withdrawal, there were no significant gender differences identified in
parental reports. Sutherland et al. (2017) also found no significant gender differences in their
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social interaction abilities. The qualitative data gave additional information about one girls’
ability to “hold everything together” while at school, but then experience “meltdowns when
gets home” (Sutherland et al., 2017). Ormond et al. (2018) found parents perceived a
significantly greater level of social masking and imitation by their daughters compared to
parents of boys. This suggested girls may be able to hide or ‘mask’ their social interaction
difficulties in certain contexts.
Although females with ASC may have skills in disguising their difficulties, issues related to
friendships were acknowledged by many parents (Rabitte et al., 2017; Cridland et al., 2014;
Mademtzi et al., 2017; Navot et al., 2017). Parents suggested their daughters either found it
difficult to maintain relationships with peers or lacked interest in forming friendships,
especially with typically developing females (Cridland et al., 2014; Mademtzi et al., 2017).
One parent suggested ASC girls “…get shunned by the others and they get left on their own”,
highlighting potential bullying and isolation (Cridland et al., 2014). Sutherland et al. (2017)
also reported girls as having significantly greater difficulties understanding friendship rules
compared to boys. However, Ormond et al. (2018) reported no significant gender differences
in parents’ perception of their children’s friendships. Contrasting evidence was presented by
Head et al., (2014), which found parents scored both ASC and neuro-typical females
significantly higher than males, meaning they perceived girls as having a greater
understanding of friendship quality, understanding and empathy. Although there were
conflicting findings about perceptions of girls’ friendships, this supported previous findings
suggesting girls sometimes use strategies to aid social interactions and friendship formation.
Some parents identified issues with their daughters connecting with peers due to their
different interests. One parent acknowledged their daughter was not a “’girly’ girl”,
suggesting a difference to the stereotypical female (Cridland et al., 2014). Contrasting this,
Sutherland et al. (2017) found that girls’ special interests appeared to be consistent with
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gender expectations, e.g. art, books and music. This suggests that although some girls may
not fit the stereotypical mould of being a ‘girly girl’, others have interests which fit gender
expectations, making them less easy to detect.
Many parents felt their daughter was vulnerable in relationships. Both Cridland et al. (2014)
and Navot et al. (2017) reported participants as “worried” and “nervous” about their
daughter dating or having relationships in the future. This included consideration of sexuality,
understanding personal boundaries, understanding social aspects of romance, ability to
identify predatory sexual behaviour and ability to keep themselves safe. Some parents felt ill-
equipped to teach their daughters’ sexual education in a way they would be able to
understand the act and the consequences (Mademtzi et al., 2017).
Sutherland et al. (2017) used mixed methods and largely focused on the quantitative elements
of the study. The statistical information was limited to percentages of individual questions
from the survey, making it difficult to consider gender differences in wider categories. The
questionnaire was formulated from a previous pilot study which, although useful in being
responsive to participants’ feedback, had not been confirmed as a valid and reliable measure
via further dissemination. There was limited information about the analysis of the qualitative
data, which was confined to context specific questions about behaviour in different settings.
Ormond et al. (2018) used the Questionnaire for Autism Spectrum Conditions (Q-ASC), but
removed three of the items from the original questionnaire following the supplementary
ordinal response being ‘not applicable’. This was a response option inconsistent with the
requirements of the Principal Component Analysis (PCA). It was unclear whether the
questionnaire used was tested in terms of its validity and reliability after these items were
removed, making it difficult to determine whether the new version of the questionnaire still
measured the data to the same standard as the original questionnaire.
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(c) Daughters’ self-care difficulties and impact on self-esteem
All four of the qualitative articles discussed parental concerns regarding daughters’ self-care
and how this impacted on self-esteem (Cridland et al., 2014; Mademtzi et al., 2017; Rabitte et
al., 2017; Navot et al., 2017). Parents’ were concerned their daughter lacked the self-care and
independent living skills expected of an adolescent (Cridland et al., 2014; Mademtzi et al.,
2017; Rabitte et al., 2017). One parent stated; “she’s not showing the signs of independence
that a child of her age would ordinarily show” (Rabitte et al., 2017). Other parents felt their
daughter lacked motivation and interest in their physical appearance; “she doesn’t care about
how she looks” (Mademtzi et al., 2017). This may be a particular point of view of parents of
girls, due to societal expectations for females to have more interest in self-care and physical
appearance compared to males.
Many parents commented on the impact of puberty and menstruation on their daughters’
development. Navot et al. (2017) and Mademtzi et al. (2017) found parents and their
daughters struggled with puberty and menstruation; “the hardest part is puberty. She does not
like having her period, having breasts” (Navot et al., 2017). In contrast, some girls’ coped
well with menstruation due to their logical and factual attitude (Cridland et al., 2014). Despite
how their daughter eventually coped, all parents expressed concerns and anxiety leading up to
puberty.
Parents discussed the impact of puberty on their daughters’ physical appearance and how this
impacted on the girls’ self-esteem. Navot et al. (2017) highlighted parents’ concerns
regarding their daughters’ restricted food preferences which led to weight gain in
adolescence, not only for their health but also their appearance; “…not only worried about
the health consequences of gaining weight but also frustrated and disappointed because I
wanted her to be thin and pretty”. This highlighted an idealised physical appearance which
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may predominantly be an issue for females and emphasised gender expectations. Mademtzi et
al. (2017) suggested parents interpreted their daughters’ growing older as becoming more
aware of differences between themselves and peers, leading to low self-esteem; “…more self-
aware that she doesn’t fit in. This has led to low self-esteem”.
The theme of parental concern regarding girls’ self-care and how this may impact on self-
esteem was confined to the qualitative data and was not explored by quantitative papers,
possibly as a result of their limited scope.
(d) Development of parent-daughter relationship.
Four qualitative studies and one quantitative study examined parents’ experiences of how the
parent-daughter relationship changed or developed over time using retrospective studies.
Some mothers in the study by Navot et al. (2017) talked about early expectations and desire
to have a close relationship with their daughter; “I wanted to have a daughter that likes the
same kind of stuff I do”. These mothers later spoke about their expectations for intimacy not
being fulfilled which led to a period of adjustment; “it wasn’t the daughter I imagined”
(Navot et al., 2017). Many parents described a journey through the diagnosis process which
mimicked grief (Cridland et al., 2014; Navot et al., 2017; Rabitte et al., 2017). This led some
parents to increase their knowledge and understanding about ASC so they could support their
daughter (Cridland et al., 2014; Rabitte et al., 2017). Some parents also discussed the benefits
of this process in deepening their understanding of their daughter; “I have a better
understanding of her” (Cridland et al., 2014). Parents’ heightened understanding also
appeared to reduce stress within the family; “I think we’re far happier in ourselves” (Rabitte
et al., 2017).
The four qualitative articles included reflections about the impact of having a daughter with
ASC on parents. Many parents needed to support their daughter for longer compared with
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other parents. This began with the need to advocate during the diagnosis process and
continued through adolescence to support them with daily living and social skills (Cridland et
al., 2014; Mademtzi et al., 2017; Navot et al., 2017; Rabitte et al., 2017). One participant in
the study by Cridland et al. (2014) alluded to parental sacrifice, stating “I always felt like at
some point I would get my life back…then I realised that wasn’t going to happen…” Parents
emphasised the difficulties associated with this as physical exhaustion, stress and burnout
(Cridland et al., 2014). This was supported by quantitative research conducted by Zamora et
al. (2014), which used the Parenting Stress Index 3, Short Form (PSI-3 Short Form) to assess
parents’ perception of stress. They found parents of girls with ASC rated parent-child
dysfunctional interaction significantly higher than parents of boys. Parents of girls also
scored significantly higher in the “difficult child” rating compared with parents of boys
(Zamora et al., 2014). There were limited discussions about why this might be the case. As it
was mostly mothers who participated, it may be related to gender expectations about the
social interaction involved in a mother-daughter relationship, and how a daughters’ diagnosis
related to this as previously found by Navot et al. (2017). Although these were helpful
findings, the study by Zamora et al. (2014) included a lower age range of children. Therefore,
results may represent mothers in different stages of the diagnosis and ‘grieving’ process.
Parents in the earlier stages of diagnosis may feel more distressed than parents with a more
established understanding of their daughters’ difficulties.
Many parents were able to identify adjustment in their expectations of the parent-daughter
bond which brought a different quality to their relationship (Navot et al., 2017; Rabitte et al.,
2017). Some parents identified reshaping the relationship through logic, aligning with their
daughter’s needs (Navot et al., 2017). When looking to the future, many parents disclosed
worries and uncertainty about their daughters’ progress. This was largely due to perceptions
of their daughters’ limited social and independent living skills (Rabitte et al., 2017; Mademtzi
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et al., 2017). This may relate to parents’ interpretations of being more involved for longer
compared to other parents (Cridland et al., 2014; Mademtzi et al., 2017; Navot et al., 2017;
Rabitte et al., 2017). Concerns about future vocational skills and general safety were
discussed (Cridland et al., 2014; Mademtzi et al., 2017). Despite these concerns, Rabitte et al.
(2017) found many parents had optimism and hope for their daughters’ futures. They did not
see their daughters’ diagnosis as a hindrance and felt that neurodiversity should be
celebrated; “It is okay to be different. Embrace it. Be who you are” (Rabitte et al., 2017).
This suggested that, despite initial challenges related to their daughters’ diagnosis, parents
were able to reach a place of acceptance through knowledge, advocacy and adjustment.
Similarly to the previous theme, much of the evidence was based on findings from qualitative
papers which allowed for exploration of experience. The quantitative paper by Zamora et al.
(2014) provided helpful insight into the impact of parental stress. However, it was difficult to
ascertain the significant gender differences due to disparities in the presentation of statistical
results and the qualitative reporting of significant findings (findings in this literature review
were based on the statistical results). Due to the lack of comparison in the qualitative papers,
it was difficult to ascertain the extent of gender specific issues or whether similar findings
would be found for parents of boys.
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Table 3: Summary of the final nine articles included in the literature review and quality ratings
Authors (Year)
Design Measure(s) Sample Age range <mean> of children & ratio of gender (m:f)
Country Outcomes/Themes Quality standards
Cridland, Jones,
Caputi & Magee (2014)
Qualitative In-depth, semi-structured interviews analysed using IPA.
3 females with ASC & 5 mothers
12-17 years (0:5)
Australia 1. Diagnostic issues2. Being surrounded by boys3. Experiences of high school4. Complexity of adolescent female relationships.5. Puberty & its related issues6. Sexual relationships & concerns7. Impact of having a daughter with ASC.
(Yardley, 2000)Sensitivity to context – awareness of literature/theory in relation to YP perspective, less focus on parental literature/theory.Commitment and rigour – partially met. Lack of explanation about analysis programme used. Results focused on quotes made by parents (mismatch between intro focus & results).Transparency and coherence – brief background of researchers mentioned but lacking reflexivity. Consultation within research team. Focus on mothers’ experience (aims focused more on YP).Impact and importance – Clinical recommendations given.
Head, McGillivray & Stokes
(2014)
Quantitative Survey using Friendship Questionnaire (FQ). Two-way factorial analyses of variance and independent samples t-tests.
50 ASC parents compared with 51 TD parents
10-16 years (25:25)
Australia -ASC parents rated FQ score lower than TD parents.-Parents scored lower than YP.-Parents of females scored FQ higher than parents of males (supports camouflaging).
(Effective Public Health Practice Project (EPHPP), 2007)a) Selection bias – moderateb) Study design – moderatec) Confounders – moderated) Blinding – weake) Data collection methods – moderate (for parent measures, weak for child measures).f) Withdrawals and drop-outs – moderateg) Global rating - moderate
Mademtzi, Sing, Shic & Koenig
(2017)
Qualitative Five separate two-hour long focus groups, 7-10 parents at a time. Semi-structured questions analysed using thematic analysis.
40 parents (mothers and fathers)
4-29 years <15.9> (0:40)
USA 1.Challenges of females with ASC:-Impairment of social skills-Difficulty building relationships-Rejection from others-Rigidity & solitary activities-Sensory-related issues-Self-care skills-Sexual related education-Co-occurring difficulties-Independence & vocational concerns-Academic related skills2.Services & resources:-Need for services-Barriers to accessing services-Helpful programs & activities
(Yardley, 2000)Sensitivity to context – Limited theory/literature about parental perspectives. Awareness of YP theory/literature re. gender differences.Commitment and rigour – findings related to research aims, however some of the reporting of quotations to back-up results were limited and did not fully support theme.Transparency and coherence – researchers mentioned their background when discussing involvement in focus groups. Analysis explained in detail.Impact and importance – Implications for future interventions given.
Navot, Jorgenson
Qualitative In-depth, semi-structured
11 mothers
10-19 years <14.8> (0:11)
USA (input
1.Maternal experiences:-Scepticism & delayed diagnosis
(Yardley, 2000)Sensitivity to context – awareness of theory/literature in
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& Webb (2017)
interviews using Naturalistic Inquiry (Erlandson et al., 1993)
from an Israeli researcher)
-Disbelief from others-Lack of information-Increasing social demands-Struggling with puberty & hygiene-Disappointment about physical appearance-Sexuality & vulnerability in future relationships-Worries about future functioning2.Impact of ASC on mother-daughter relationship-Early expectations of close connection-Guilt & grief due to late diagnosis-Adjusting to difference in early expectations & reality-Different quality of mother-daughter relationship.
relation to YP & mother-daughter relationship (TD & ASC). Acknowledgement of limited research.Commitment and rigour – thorough methodology but limited description of analysis procedure.Transparency and coherence – questioning evoked results relevant to research aims. Limited reflexivity about researcher perspective (Navot involved with Crown Family Foundation who supported the study but did not discuss influence).Impact and importance – Limited. Suggests findings could help providers support gender-specific challenges but does not relate to specific examples or interventions.
Ormond, Brownlow,
Garnett, Rynkiewicz & Attwood
(2018)
Quantitative Questionnaire for Autism Spectrum Conditions (Q-ASC). Analysed using Principal Component Analysis (PCA) and Parallel Analysis.
236 parents
5-19 years (138:98)
Australia Aspects rated by parents that were statistically significant:1. Gendered behaviour greater issue for females.2. Sensory sensitivity greater issue for females.3. Social masking greater issue for females.4. Imagination greater interest to females.5. Imitation greater issue for females.6. Talents & interests higher for females.
(EPHPP, 2007)a) Selection bias – moderate.b) Study design – moderate.c) Confounders – moderate.d) Blinding – weak.e) Data collection methods – weak (items removed & not validated).f) Withdrawals and drop-outs – strong.g) Global rating – moderate.
Pisula et al., (2017)
Quantitative Child Behavior Checklist (4-18) completed by parents & Youth Self-Report (11-18). Two-factor analysis of variance (ANOVA), correction for multiple comparisons, Pearson’s product moment correlations & t-test for dependent samples.
70 ASC parents (97% mothers) compared with 48 TD parents
11-18 yearsASC group (35:35), TD group (24:24)
Poland 1. ASC parents reported higher difficulties in all areas compared with controls (withdrawn, somatic complaints, anxious/depressed, social problems, thought problems, attention problems, delinquent problems, aggressive behaviour, internalising, externalising & overall).2. Parents of ASC females yielded significantly higher scores in all areas except somatic complaints.
(EPHPP, 2007)a) Selection bias – moderate.b) Study design – moderate.c) Confounders – moderate.d) Blinding – weak.e) Data collection methods – moderate.f) Withdrawals and drop-outs – moderate.g) Global rating – moderate.
Rabitte, Qualitative Semi-structured Six sets 11-17 years Ireland 1. Noticing the signs – potential for (Yardley, 2000)
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Prendeville & Kinsella
(2017)
interviews analysed using IPA.
of parents of girls with ASC (12 parents total)
(0:6) misdiagnosis & signs evident in hindsight.2. An emotional journey – need to advocate, from shock to relief.3. Moving forward – support & help, understanding my daughter, a daughter’s understanding of self, other people’s perceptions.4. Looking to the future – fear of the unknown, optimism & hope.
Sensitivity to context – awareness of theory/literature about YP presentation & parents’ perspectives. Appropriate links between literature & research question.Commitment and rigour – thorough description of methodology & analysis procedure.Transparency and coherence – coherent findings which were relevant to original research question. Limited researcher reflexivity, although there were external auditors involved in the analysis.Impact and importance – implications for clinicians given.
Sutherland, Hodge, Bruck,
Costley & Klieve (2017)
Mixed methods Questionnaire created based on previous thematic analysis & additional open comments analysed using thematic analysis.
171 parents of girls, 163 parents of boys
5-18 years (163:171)
Australia 1.Statistical analysis:Few differences between males & females for communication, social interaction, repetitive behaviours, sensory sensitivities & special interests. Differences in topics of special interests, girls more likely to be typical of gender.2.Thematic analysis:Differences across settings – more comfortable at home, quiet & reserved at school, tries hard at school, holds everything together at school. More conscious effort for girls to blend in.
(EPHPP, 2007)a) Selection bias – moderate.b) Study design – moderate.c) Confounders – moderate.d) Blinding – weak.e) Data collection methods – weak.f) Withdrawals and drop-outs – moderate.g) Global rating – weak.
(Yardley, 2000)Sensitivity to context – awareness of theory/literature about YP presentation but none about parental perspectives.Commitment and rigour – limited information about qualitative analysis. Focus on quantitative findings. Majority of quotes used from parent of females.Transparency and coherence – transparent within acknowledgement section & an attempt to be reflexive was made.Impact and importance – implications for teachers/clinicians/diagnosticians given (integrated in text).
Zamora, Karley, Green,
Smith & Kipke
(2014)
Quantitative Parenting Stress Index-3 short form (PSI-3 short form. ADOS. Medical history form.Independent-sample t-tests & Chi-square analyses. Hierarchical regressions. Univariate analysis of variance
116 parents total (mothers only)
1-15 years (89:27)
USA 1. Parents of girls rated significantly higher distress & parent-child dysfunctional interaction compared with parents of boys.2. Fewer services predicted higher stress in parents of girls (but not boys).3. Girls received fewer speech & language services but more school services.
(EPHPP, 2007)a) Selection bias – moderate.b) Study design – moderate.c) Confounders – moderate.d) Blinding – weak.e) Data collection methods – PSI = strong, ADOS = strong, services form = weak.f) Withdrawals and drop-outs – moderate.g) Global rating – moderate.
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(ANOVA)
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Table 4: Statistical findings of the included quantitative articles Authors
(Year)Participant group(s) What’s being
measured?Description of findings Significant difference and effect size
Head, McGillivray
& Stokes (2014)
Parents of girls with ASC.
Parents of boys with ASC.
Parents of typically developing (TD) males.
Parents of TD females.
Sociability via Friendship Questionnaire (FQ)
1. Parents of females scored higher than parents of males on the FQ, meaning they think their daughters have a better understanding of friendship quality, understanding and empathy.
2. Parents of participants diagnosed with ASD scored lower than TD participants, regardless of gender.
1. Gender was a significant predictor of FQ scores, as rated by
parents (F(1, 101) = 7.99, P < 0.01, η2 = 0.08).
2. Diagnosis was a significant predictor of FQ scores, as rated by
parents (F(1, 101) = 47.67, P < 0.001, η2 = 0.33).
Ormond, Brownlow,
Garnett, Rynkiewicz &
Attwood (2018)
Parents of girls with ASC.
Parents of boys with ASC.
Autism symptomology via Q-ASC
1. Parents indicated a greater level of gendered behaviour issues for females compared to males.
2. Parents indicated a greater level of sensory sensitivity characteristics for females than males.
3. Parents were consistent in their reporting of compliant behaviours observed for males and females, no differences noted.
4. Parents reported similarly for males and females regarding friendships and play.
5. Parents indicated a greater level of social masking for females compared to males.
6. Parents indicated a greater level of interest in imagination characteristics for females compared to males.
7. Parents indicated a greater level of imitation demonstrated by females compared with males.
8. Parents indicated a greater level of appeal for certain talents and interests in females compared to males.
1. Gendered behaviour reported a statistically significant main effect
for sex (F(1, 227) = 67.77, p < .001, ηp2 = 0.23).
2. Sensory Sensitivity identified a statistically significant main effect
for sex (F(1, 229) = 11.725, p < .001, η2 = 0.05).
3. Compliant Behaviour found no statistically significant effects for sex (F(1, 231) = 1.12, p = 0.29).
4. Friendships and Play found no statistically significant main effect reported for sex (F(1, 231) = .02, p = 0.53).
5. Social Masking identified significant main effect for sex (F(1, 232)
= 17.70, p < .001, η2=0.07).
6. Imagination indicated a statistically significant main effect for sex
(F(1,226) = 4.61, p = .03, η2 = 0.02).
7. Imitation indicated a statistically significant main effect for sex
(F(1, 227) = 57.49, p < .001, η2 = 0.20).
8. Talents and Interests indicated a statistically significant main effect
for sex (F(1, 231) = 6.026, p = .02, ηp2 = 0.03).
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Pisula et al. (2017)
Parents of girls with ASC.
Parents of boys with ASC.
Parents of TD males.
Parents of TD females.
Autism symptomology via Child Behavior Checklist (4-18)
Parents’ reports of autism symptomology indicated no significant differences based on sex/gender.
No main effect of sex/gender based on parents’ ratings of symptomology (no analysis recorded).
Sutherland, Hodge, Bruck,
Costley & Klieve (2017)
Parents of girls with ASC.
Parents of boys with ASC.
Autism symptomology
1.Boys and girls were similarly likely to be described as talkative or chatty, non-verbal, having one or two special friends, being better in one-to-one situations, not understanding social cues, having difficulties in group settings and worrying excessively about social situations.
2. Parents described boys as communicating well if interested in the topic more frequently than parents of girls.
3. Parents described boys as preferring to talk about his or her own interests significantly more frequently than parents of girls.
4. Parents described significantly more girls as not understanding friendship rules compared to parents of boys.
5. Parents described significantly more girls as having a sensitivity to taste compared with parents of boys.
6. Parents of boys described them as having a special interest in technology, dinosaurs and transport more frequently than parents of girls.
7. Parents of girls described them as having a special interest in art, books and singing/music more frequently than parents of boys.
1. Reported as talkative or chatty (46.6% boys; 48.5% girls), non-verbal (60.7% boys; 54.4% girls), having one or two special friends (42.9% boys; 48.5% girls), being better in one-to-one situations (62% boys; 57.9%), not understanding social cues (84% boys; 76% girls), having difficulties in group settings (71.2% boys; 65.5% girls) and worrying excessively about social situations (54.6% boys; 59.1% girls). No significant gender difference.
2. Parents of boys reported as communicating well if interested in the topic significantly more frequently than girls (69.9% boys; 50.3% girls. OR=3.775, p=0.009).
3. Parents of boys reported as preferring to talk about his or her own interests significantly more frequently than girls (68.1% boys; 50.3% girls. OR=2.637, p=0.037).
4. Parents of girls reported that they do not understand friendship rules significantly more frequently than boys (60.1% boys; 63.2% girls. OR=0.409, p=0.027).
5. Parents of girls reported sensitivity to taste significantly more frequently than parents of boys (35.6% boys; 49.7% girls. OR=0.263, p=0.002).
6. Parents of boys reported a significantly higher interest in technology (85.9% boys; 64.9% girls. OR=4.193, p=0.004), dinosaurs (14.7% boys; 8.2% girls. OR=4.353, p=0.018) and transport (27.0% boys; 2.3% girls. OR=46.962, p<0.000) compared to parents of girls.
7. Parents of girls reported a significantly higher interest in art (15.3% boys; 43.9% girls. OR=0.257, p=0.002), books (32.5% boys; 45% girls. OR=0.400, p=0.034) and singing/music (22.7% boys; 52% girls. OR=0.192, p<0.000) compared to parents of boys.
Zamora, Harley,
Green, Smith & Kipke
Parents of girls with ASC.
Parents of boys with
Autism symptomology & access to services on
1. There were no gender differences in the amount of services received.
2. No significant group differences in severity of ASC symptoms.
1. No significant gender differences in amount of services.
2. No significant gender differences in ASC symptomology.
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(2014) ASC. parental stress via PSI-3 short form, ADOS & medical history form
3. **Parents of girls rated the difficult child subsection of the PSI-3 significantly higher than parents of boys.
4. Parents of girls rated parent-child dysfunctional relationship of the PSI-3 as significantly higher than parents of boys.
3. **Parents of girls rated difficult child significantly higher (M=37.08, SD=12.19) than parents of boys (31.74, SD=8.83), t(116)=2.08, p<0.05. Levine’s test indicated equal variances not assumed (F=7.37, p<0.01).
4. Parents of girls rated parent-child dysfunctional relationship as significantly higher (M=28.92, SD=8.35) than parents of boys (M=24.07, SD=7.17), t(116)=2.93, p<0.01. Levine’s test indicated equal variances (F=3.47, p<0.10).
**Presentation unclear – qualitative information in article states that parental distress was rated as significant instead of difficult child despite descriptive statistics table stating the above.
Table Key:
Statistically significant results presented in bold font.
Effect size (η2 and ηp2) interpretation: 0.01 = small effect; 0.06 = medium effect; 0.14 = large effect (Miles & Shevlin, 2001).
Discussion
Previous research has neglected female symptomology and experience that led to challenges
in obtaining a diagnosis of ASC and getting support from appropriate services. This is the
first literature review to evaluate and summarise research findings related to parents’
experiences of having a daughter with ASC and makes an important contribution to our
understanding of gender differences in prevalence, and the part parents play in terms of
identification and diagnosis. By summarising the current findings in this area, it is hoped that
awareness and diagnostic processes for girls may be improved, identifying them earlier and
avoiding mis-diagnosis. This may help to broaden understanding of the female experience
and inform educational and clinical practice changes.
Parents of girls’ reported their experiences of diagnosis and accessing services as
problematic, resulting in a late diagnosis of ASC. There were some inconsistencies in how
parents perceived their daughters’ social skills. Although parents noted their daughters’
problems in interacting with others, some studies found these difficulties were similar to boys
with ASC. Parents of girls noted an increased ability to ‘mask’ their social difficulties more
frequently than parents of boys. There were also inconsistencies in parents’ perception of
girls’ friendships. Some reported friendships were problematic due to bullying, isolation and
concerns about vulnerability, whereas others suggested girls were more able than, or
comparable with, boys in making friendships. It may be the differences in these perceptions
were also due to girls being more able to use strategies to ‘mask’ their difficulties, or use their
special interests which were more in-line with gender stereotypes to form alliances (e.g. art,
books, singing or music). Parents’ perceived problems with self-care and lack of interest in
physical appearance as impacting on daughters’ self-esteem. The management of puberty was
also discussed revealing contradictory perceptions of the ease with which daughters’ were
able to manage this. Parent-daughter relationships developed over time, with a period of
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‘grief’ following diagnosis moving towards adjustment and acceptance. Gender expectations
appeared to play a role in how parents perceived their daughters’ difficulties, i.e. societal
expectations for girls to be more sociable and more interested in their physical appearance
compared with boys (Lorber, 1994). This seemed to feature in the adjustment in the mother-
daughter relationship from their idealised expectations following diagnosis. The potential
influence of gender expectations in the perception of girls with ASC are explored further
below.
Social Context: Sex/gender
Sex/gender differences appeared to influence the expectations parents included in these
studies. In many cases gender differences in the typically developing populations were not
included for comparison, making it difficult to ascertain whether these differences were
specific to people with ASC. Supporting research suggests socialisation strategies were more
supportive of communication progress for females than males (Leaper, Anderson & Sanders,
1998; Bussey & Bundura, 1999), suggesting girls with or without a diagnosis may receive
more communication input from an early age due to their gender, which acts as a protective
factor against communication difficulties experienced by people with ASC and supports the
development of social strategies.
The differences in the expression of distress dependent on sex/gender also influences the time
at which people were referred to the diagnosis pathway. Externalised distress and ‘socially
unacceptable’ behaviour were considered as flagging young people’s difficulties and distress,
assisting in them receiving a timely diagnosis. The review found females with ASC
internalised distress and were likely to be labelled as ‘shy’. A similar pattern was found in the
typically developing population. One study found toddlers or preschool-aged typically
developing girls showed fewer externalising emotions compared with typically developing
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boys (Hartung & Widiger, 1998). This suggested societal expectations of the expression of
emotion for each gender may influence how distress is managed and interpreted, regardless of
diagnosis. Parents and professionals may overlook girls who are internalising their distress
and being ‘shy’, as this is considered appropriate behaviour for their gender, causing parents
or professionals to miss early ASC traits. This may contribute to the lower number of females
identified as having ASC and should be considered further.
Social Context: Perspectives and Expectations
As this narrative literature review focused on the experiences of parents and not the young
people themselves, it was important to reflect on this in terms of the information gathered.
Many of the studies asked parents about retrospective experiences, which may be impacted
by interpreter bias due to them being self-reported. Parents’ stories may have been influenced
by past experiences and gendered societal expectations, changing the way they recalled and
evaluated events. Parents may also recall information about their children in a more socially
desirable way, or in contrast to this, parents may give responses they think the researchers are
looking for. Both of these responses would need parents to take into consideration what is
‘normal’ for a boy or girl based on their societal and cultural understanding, which may be
different from or similar to others depending on their own social context.
Additionally, the majority of the studies in this literature review focused on the mother-
daughter dyad with very limited involvement from fathers. It is unclear whether the articles
favoured the involvement of mothers or whether there was little success in recruiting fathers
as participants. As many of the findings reflect aspects of gender socialisation, i.e. what is
expected from a girl as opposed to a boy, it would be interesting to compare the experiences
of mothers and fathers. It is likely there would be differences in the appraisal of their
daughters’ behaviour due to their own experiences of gender.
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The final articles used populations from Western cultures, which was a strength in terms of
transferability of findings between studies, but may not be transferable to other cultures.
None of the Western populations were based in the United Kingdom (U.K.) where the
literature review took place. It is likely that the experiences of the diagnosis pathway
available post-diagnosis through the U.K.’s unique National Health System (NHS) would be
very different compared to the other studies evaluated. There may also be geographical and
cultural factors which affect parents’ access to services based on different areas of the U.K.
Limitations
The literature review reflected a currently limited research base into female experience of
ASC, particularly when incorporating the perspectives of parental figures. As previously
stated, females are generally diagnosed in their adolescence due to being mis-diagnosed or
expressing symptomology differently to males (Rivet & Matson, 2011; Solomon et al., 2012).
Although the focus of the literature review was the critical period of adolescence, the range of
ages included in studies varied, often including pre-school-age children or extending into
adulthood. The inclusion of daughters before or after the period of adolescence is problematic
as this represents parents at different stages of the diagnosis process, and therefore their
understanding of their daughter would be different depending on where they were in that
process.
Due to the lack of suitable literature, some of the papers included were not of the highest
quality following interpretation using quality standards tools. For example, Sutherland et al.
(2017) reported limited statistical analysis and did not incorporate effect sizes. However,
following discussions with experienced researchers, it was felt the papers added enough to
the review to remain as they aided discussion of the topic area. For this reason, more findings
were taken from those papers considered to be of higher quality and presenting more credible
P a g e | 111
findings. For example, many of the qualitative papers featured in the final themes due to the
methodology being more exploratory, resulting in rich data relevant to the research question.
The qualitative data used small sample sizes which provided in-depth information about
specific parental experiences, but may not be generalizable to other parents in different
socioeconomic, geographical or cultural situations. There was a lack of research regarding
parental experiences of girls with ASC in the U.K, which was the setting of the current
literature review. Therefore, these themes may not be generalizable to parents in the U.K. and
the impact of the NHS on the process of diagnosis. This review also did not consider
autobiographical material of parental experiences of having a daughter with ASC. As this
area of literature expands, it may be an interesting avenue for future research to consider.
Clinical Implications
This literature review suggests that we raise awareness of the different symptomology of girls
with ASC, especially in educational settings, clinical settings and for parents. It may be
useful to consider wider usage of screening tools which focus more on female
symptomology. Attwood, Garnett and Rynkiewicz (2011) produced a tool called the Girls’
Questionnaire for Autism Spectrum Conditions (GQ-ASC) to consider subtle social
interaction difficulties and internalisation of distress more commonly observed in females.
The GQ-ASC was later renamed the Questionnaire for Autism Spectrum Conditions Age 5-
19 (Q-ASC; used by Ormond et al., 2018) and work continues to develop scoring systems
which are valid in identifying the diverse presentation of girls. It is hoped screening tools
such as the Q-ASC (Attwood et al., 2011) or similar tools may be used with girls at a younger
age to promote earlier identification and assessment of girls with ASC. Due to the short and
concise nature of screening questionnaires, they may be used by a variety of professionals
and clinicians to draw attention to potential difficulties or traits. This would reduce the
likelihood of misdiagnosis or girls who remain undiagnosed for a long time through not being
P a g e | 112
identified. This emphasises the need for female specific support and services. It is hoped
earlier assessment would facilitate acceptance and understanding for girls with ASC and their
families, reducing distress and associated mental health difficulties.
Future Research
Although there were merits in the inclusion of quantitative studies for this literature review, it
was difficult to consider these findings within the participants’ social context. Many of the
qualitative studies allowed more exploration of issues pertinent to having a daughter with
ASC and facilitated discussions about the subtleties of girls’ presentations. An exploratory
qualitative study focusing on parents’ lived experiences of noticing traits, the journey of
gaining a diagnosis for their daughter and experiences since the diagnosis of managing
different challenges would add to understanding factors of difference and social context.
There appeared to be limited information about parents and their daughters across the
lifespan of how their journey changed and developed over time. As the majority of studies
only provided a snapshot of experience, it may be beneficial to conduct a longitudinal study
of the diagnosis process and beyond. It would also be beneficial to conduct research in the
U.K., as this would reflect context specific factors of the NHS and other cultural and
geographical influences.
Summary and Conclusions
This review shows that parents of girls with an ASC report difficulties in gaining a diagnosis
and accessing services. There were inconsistent findings about the differences between males
and females in terms of social difficulties, and further contradictions of how these difficulties
impact on friendships. It is clear that parents undergo a period of adjustment following
diagnosis that reframes their relationship with their child. Further research should address the
experience of females to enable better understanding of the subtleties in presentation that are
P a g e | 113
a barrier to diagnosis and access to services. Parents and professionals would then be better
able to recognise these subtleties in girls’ presentations to provide earlier access to ASC
assessments and appropriate strategies to help support the young people and their families.
P a g e | 114
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Part 3: Clinical Experience on Training
Year 1
Adult Placement (12 months)
My first clinical placement was split between an adult community recovery and support team
and an early intervention for psychosis service. My main role was conducting psychological
assessments, formulation and interventions. I gained experience delivering evidence based
psychological interventions, primarily Cognitive Behavioural Therapy (CBT) with adults
presenting with complex problems. The difficulties experienced by people I worked with
ranged in severity and diagnosis, including anxiety, depression, psychosis, post-partum
psychosis, bipolar affective disorder, emotionally unstable personality disorder and
schizophrenia with some distressing voice hearing. I also contributed to the family clinic as a
member of the reflecting team which worked to implement interventions via the family
system. I co-facilitated a group using Acceptance and Commitment Therapy (ACT) and a
workshop about the impact of worry for people who had experienced psychosis with a
clinical psychologist and a trainee clinical psychologist respectively. I worked closely with
the multi-disciplinary team (MDT) colleagues in both teams to coordinate care, create
formulations, deliver interventions and manage risk. I undertook neuropsychological
assessments, provided informal consultations to colleagues and delivered training to nursing
colleagues about boundaries. Whilst on this placement I evaluated the referral numbers and
criteria received by the recovery and support team from the local single point of access team.
This was later written up as part of my service evaluation project.
Year 2
Learning Disability Placement (6 months)
On my learning disability placement I worked within a community team for people with
learning disabilities. I worked systemically with the individual and their wider system, for
example their partner, their family or a staff team. I delivered adapted individual and
systemic therapy using CBT, positive behaviour support (PBS) and systemic approaches for
clients with low mood, anxiety, anger and behaviour that challenges. I co-facilitated an
adapted dialectic behaviour therapy (DBT) group for people with complex difficulties, such
as depression, previous psychosis and personality disorder. I completed adapted
neuropsychological assessments in a care home to assess for potential dementia. As well as
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formal reports to the system, such as letters and PBS plans, I also wrote accessible letters to
the people I worked with. I conducted informal consultation work with members of the MDT
and a formal consultation by coordinating a PBS intervention with a speech and language
therapist and occupational therapist. I also communicated with various social workers and
worked in a multi-agency way. I delivered training to assistant psychologists about using
ACT with different clients.
Child Placement (6 months)
My child placement was split between a Child and Adolescent Mental Health Team Learning
Disabilities (CAMHS-LD) Service and a Child and Adolescent Mental Health Team for
Looked after Children (CAMHS-LAC) Service. My main role was to provide assessment,
formulation and focused interventions for young people with a range of difficulties. In
CAMHS-LD I worked primarily with the young person and the system around them (family,
school, respite care) where the young person was experiencing difficulties such as depression,
anxiety, sleep problems, co-morbid neurodevelopment conditions, communication difficulties
and behaviour that challenged. In CAMHS-LAC I had the opportunity to use CBT and
attachment models to work with young people who were distressed by depression, anxiety,
anger, trauma, and attachment and identity difficulties related to being in care. I also worked
with carers and professionals in a consultation clinic to discuss new referrals, many of whom
had experienced trauma and attachment difficulties.
I completed cognitive assessments using the Wechsler Intelligence Scale for Children
(WISC-IV) and the Wechsler Preschool and Primary Scale of Intelligence (WPPSI-IV) and
carried out multiple school observations. I co-facilitated teaching to other professionals on
child development with a Clinical Psychologist. I also co-facilitated training to colleagues
about working with young people who self-harm. I had non-clinical contact with a small
group of children who I supervised as part of the looked after children youth group away day.
Year 3
Specialist Placement (6 months) Community Neurorehabilitation Service
My specialist placement was a community neurorehabilitation service for people with a
traumatic brain injury. This was primarily following a stroke, but also included post-surgical
damage, Guillain-Barre syndrome and injury resulting in a loss of consciousness. My main
role was to provide assessment, formulation and intervention for people who were
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experiencing psychological distress. This included people who were depressed, anxious,
lacked insight and people who had behaviour that challenged. I also conducted a number of
neuropsychological assessments which informed psychological and MDT interventions. I
mainly used CBT and systemic models, but also drew upon neuropsychological knowledge to
informed therapeutic work. As well as one-to-one work, I also co-facilitated the creation and
implementation of a CBT group for people with anxiety or depression. This was run with an
assistant psychologist who I also informally supervised for the group. I also co-delivered
training for colleagues about motivational interviewing.
Older Adult Placement (6 months)
My final placement was split between a memory assessment service, an older adult
community recovery and support team and a physical health rehabilitation service. In the
memory assessment service, my main role was to complete interviews and carry out
numerous neuropsychological assessments with people who had suspected memory problems
or dementia. This involved feeding back findings to the individual and working with their
psychiatrist to conclude the outcome. I also carried out psychological assessments,
formulations and interventions with people who had a range of difficulties including anxiety,
depression, unusual beliefs and paranoia, difficulties adjusting to physical health needs or
dementia and fear of falling. I used CBT, Compassion Focused Therapy (CFT) and systemic
models. I ran teaching for a group of people with a fear of falling on a few occasions and also
one session for people in a group for pulmonary rehabilitation. I presented training for
colleagues with another trainee about neurodiversity and Autism Spectrum Conditions
(ASC). I attended neuropsychological supervision which included presenting case
formulations to colleagues.
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Part 4: Table of Assessments Completed During Training
Year I Assessments
ASSESSMENT TITLE
WAIS WAIS Interpretation (online assessment)
Practice Report of Clinical Activity
A Report of Clinical Assessment and Formulation with a White British Female in her 50’s who had a Diagnosis of Bipolar Disorder and was Experiencing Anxiety and Depression.
Audio Recording of Clinical Activity with Critical Appraisal
Critical Appraisal of an Audio Recorded Session with a Male Client Experiencing Low Mood and Anxiety.
Report of Clinical Activity N=1
A Report of Clinical Assessment, Formulation and Intervention with a White British Male in his 60’s who was Experiencing Low Mood and Anxiety.
Major Research Project Literature Survey
What does Literature tell us about Adolescent Girls with a Diagnosis of Autistic Spectrum Condition and their Sense of Self-Identity?
Major Research Project Proposal
How do Parents make sense of their Daughters with an Autism Spectrum Condition?
Service-Related Project An Evaluation of Referral Criteria used by an Assessment Team to Refer Service Users to Recovery Support Teams in Secondary Care.
Year II Assessments
ASSESSMENT TITLE
Report of Clinical Activity/Report of Clinical Activity – Formal Assessment
A Systemic Report of Clinical Activity with a White British Female in her 30’s who had a Learning Disability and Displayed Behaviour perceived as Challenging to the System around her.
PPD Process Account Personal and Professional Development Process Account: Helping Ourselves to Help Others.
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Year III Assessments
ASSESSMENT TITLE
Presentation of Clinical Activity
Presentation of Clinical Activity: Using a CBT Approach with an Adolescent Male in the Foster Care System Experiencing Difficulties Managing Anger & Reported Hearing Voices.
Major Research Project Literature Review
A Review of Parents’ Experiences of Having a Daughter with a Diagnosis of Autism Spectrum Condition.
Major Research Project Empirical Paper
An Interpretative Phenomenological Analysis of Parents’ Understanding of their Daughters’ Autism Spectrum Condition.
Report of Clinical Activity/Report of Clinical Activity – Formal Assessment
Neuropsychological Assessment of a Male in his mid-70s who was referred due to queried Cognitive and Mood difficulties following a Stroke.
Reflective Portfolio Reflective Portfolio