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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).

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(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.

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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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Functioning Autism Spectrum Conditions. PLoS ONE, 6(6): e20835.

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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

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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

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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.

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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