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PARENTS’ SENSE-MAKING BEFORE THEIR DAUGHTER’S DIAGNOSIS OF ASC

How Parents Understand Their Daughters Behaviour Before They Receive a Diagnosis

of an Autism Spectrum ConditionNatalie Kseib

Submitted for the Degree of

Doctor of Psychology(Clinical Psychology)

School of PsychologyFaculty of Health and Medical Sciences

University of SurreyGuildford, SurreyUnited KingdomSeptember 2018

© Natalie Kseib 2018

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Abstract

Introduction: Prevalence studies show that fewer girls are diagnosed with Autism Spectrum

Conditions (ASCs) than boys. This difference is particularly marked where there is no

cognitive impairment. Some suggest that ASCs present differently between males and

females, perhaps leading to delayed diagnosis in girls. A review of the literature exploring

sex/gender differences found that many studies have measured the severity of ASC symptoms

rather than the quality of difference. Limited research has considered the perspectives of

parents on the signs noticed in their daughters and the context in which difference is noticed.

Objective: This study sought to explore how parents make sense of their daughters’

behaviours and the processes by which behaviours are perceived as requiring intervention or

diagnosis. Participants: Five parents whose daughters (aged 9-12 years) had recently

received a diagnosis of an Autism Spectrum Condition without cognitive impairment were

invited to tell their stories of diagnosis. Design: Transcripts were analysed using a narrative

approach, focusing on how stories were told. Findings: Narrative themes were identified

across transcripts in relation to the process by which behaviours are made sense of. Themes

included: daughters only showing their ‘real self’ in safety; their distress peaking; parents

questioning normality; and parents feeling blamed and unheard. Conclusions: The findings

are discussed in relation to existing research and theory. Implications are discussed in relation

to education and health services and UK policies. Further research into parents’ experience of

judgement in relation to their child’s behaviour, and exploration of interventions for masking

in girls is needed.

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Acknowledgements

I would like to thank all of the tutors and staff on the course team for inspiring and supporting

me through the stressful but enriching experience of clinical training. Specifically, I want to

express my gratitude to my research supervisors, Dr Kate Gleeson and Dr Emma Williams

for their guidance, expertise and emotional support. I also wish to thank my clinical tutors, Dr

Eli Joubert, Dr Gemma Perman and Dr Zoe Clyde and all my placement supervisors

throughout my clinical placements, for helping me to develop my skills and challenge me to

reflect and continually learn more about myself.

I have had many challenging, enriching, stressful and happy experiences throughout training.

Thank you to everyone who has been part of the journey with me; to my past work colleagues

and fellow trainees.

Thank you finally to my wonderful friends and family; for being patient with me and

supporting me through the challenging times. Now this is in we can get celebrating!

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Contents

Part 1: Major Research Project Empirical Paper

Abstract

Introduction

Method

Results

Discussion

References

Empirical Paper Appendices

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6

7

16

21

37

48

60

Part 2: Major Research Project Literature Review

Abstract

Introduction

Methods

Results

Discussion

References

Literature Review Appendix

113

115

116

121

137

151

160

173

Part 3: Summary of Clinical Experience 180

Part 4: Table of Assessments 183

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Part 1Major Research Project Empirical Paper

How Parents Understand Their Daughters Behaviour Before They Receive a Diagnosis of an Autism Spectrum Condition

Word Count: 9998

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Abstract

Introduction: Prevalence studies show that fewer girls are diagnosed with Autism Spectrum

Conditions (ASCs) than boys. This difference is particularly marked where there is no

cognitive impairment. Some suggest that ASCs present differently between males and

females, perhaps leading to delayed diagnosis in girls. A review of the literature exploring

sex/gender differences found that many studies have measured the severity of ASC symptoms

rather than the quality of difference. Limited research has considered the perspectives of

parents on the signs noticed in their daughters and the context in which difference is noticed.

Objective: This study sought to explore how parents make sense of their daughters’

behaviours and the processes by which behaviours are perceived as requiring intervention or

diagnosis. Participants: Five parents whose daughters (aged 9-12 years) had recently

received a diagnosis of an Autism Spectrum Condition without cognitive impairment were

invited to tell their stories of diagnosis. Design: Transcripts were analysed using a narrative

approach, focusing on how stories were told. Findings: Narrative themes were identified

across transcripts in relation to the process by which behaviours are made sense of. Themes

included: daughters only showing their ‘real self’ in safety; their distress peaking; parents

questioning normality; and parents feeling blamed and unheard. Conclusions: The findings

are discussed in relation to existing research and theory. Implications are discussed in relation

to education and health services and UK policies. Further research into parents’ experience of

judgement in relation to their child’s behaviour, and exploration of interventions for masking

in girls is needed.

Key Words: Autism, Diagnosis, Females, Gender, Girls, High Functioning

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Overview

A review of the literature showed that children and adolescents with a diagnosis of an

Autism Spectrum Condition (ASC)1 may show different signs and symptoms of the disorder

according to their sex/gender2. However, there is a lack of research that investigates the

context in which signs and symptoms of ASCs are noticed. An exploratory study was deemed

necessary in understanding this. This research aimed to analyse the stories of parents with

daughters diagnosed as having an ASC to explore how behaviours are made sense of before

diagnosis. In keeping with a narrative approach, I3 will firstly outline my influences for

conducting the research before summarising the literature demonstrating the rationale for the

study.

Influences for this Research

Personal significance

My interest in this research is informed by my curiosity about why people seek to

define difference given the often, negative connotations associated with it. I have observed, in

both my personal life and clinical work, the powerful impact that diagnosis can have on our

understandings of ourselves and others. This has sparked an interest in considering how our

1 In order to avoid implying a ‘disordered’ person (Baron-Cohen, Scott, Allison, Williams, Bolton et al., 2009) and to encourage less stigmatising terminology I will use the term Autism Spectrum Condition (ASC), rather than Autism Spectrum Disorder (ASD) throughout this paper. Where the term “autism” is used, this refers to the diagnostic label.2 In this paper “sex” refers to “the biological and physiological characteristics that define men and women,” whilst “gender” refers to “the socially constructed roles, behaviours, activities, and attributes that a given society considers appropriate for men and women.” (definitions adopted from the World Health Organization, 2015). However, because gendered socialization begins at birth, it is difficult to separate the effect of sex and gender. For this reason, unless “sex” or “gender” is specifically used as defined above, the term “sex/gender” will be used to acknowledge the inevitable overlap between them (Springer, Mager Stellman & Jordan-Young, 2012).3 ‘Honesty and transparency’ are regarded as important components of good quality qualitative research (Tracy, 2010). I have therefore chosen to narrate this thesis in both the first and third person to be open about my reflections.

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https://link.springer.com/article/10.1007/s10803-016-2873-7#CR6


stories shape our perceptions. Reflection on my own assumptions and values has been an

integral part of the research process.

Social significance

ASC diagnosis is complex and parents often experience difficulties and frustration

during the process. Additionally, parents of children with ASC are known to experience more

stress than parents of children with any other condition, perhaps due to challenges in social

relatedness and the parent–child relationship (Davis and Carter, 2008). In children without

Intellectual Disability, autism is believed to be mis- or underdiagnosed in girls in

comparison to boys (Giarelli, Wiggins, Rice, Levy, Kirby et al., 2010; Gillberg, 1993; Kim,

Leventhal, Koh, Fombonne, Laska et al., 2011; Mattila, Kielinen, Linna, Jussila, Ebeling et

al., 2011). By developing an improved understanding of the context of diagnosis for this

population, we could better support families by intervening earlier.

Understanding Autism Taking a Social Constructivist Approach

ASCs are predominantly understood within the medical model, and usually defined as

neurodevelopmental disorders. Medical and scientific literatures explicitly and implicitly

reflect this, representing autism as ontological, or a ‘truth’ that can be discovered (Timimi,

Gardner & McCabe, 2011). There is ongoing debate about what this ‘truth’ is. Autism is

usually assumed to be associated with genetic, neurological, biological or chemical

abnormality (Molloy & Vasil 2002; National Institute for Health and Care Excellence

[NICE], 2011) but the mechanism of causation remains unknown and to date, no specific

genes linked to ASC have been identified (NICE, 2011). The National Autistic Society states

that ‘Autism is a developmental condition affecting the way the brain processes information’

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(National Autistic Society, 2016), representing ‘Autism’ as an agent that directly causes

neurological impairment.

Recently there has been some discussion about how autism can be regarded as a

‘social construct’, taking into account the social conditions in which ASCs first became and

are now labelled and recognised (Nadesan, 2013). These understandings do not necessitate

that there is no biogenic or psychogenic basis to ASC. Rather, they observe autism as a

diagnostic category that is shaped within a socio-cultural context of ‘normalness’ (Biklen,

2005; Molloy & Vasil 2002; Smukler, 2005; Timimi, 2004). That is, autism is understood as

a nominal category for grouping a greatly diverse group of people who share communication

practices that are significantly different from what is considered ‘normal’. In this way

society’s perceptions of normalcy are accounted for in the understanding of when and why

the diagnosis is given, and the impact of the diagnosis on both individuals who receive the

diagnosis and their networks. The theoretical understanding adopted in social constructivism

acknowledges the cultural and philosophical values and ideals that diagnosis is rooted in. It

also helps to explain the difficulty in defining autism, as it parallels the difficulty in defining

what is and is not ‘normal’ and critically considers the practice of formalising the label of

‘abnormal’ (Biklen, 2005; Nadesan, 2013; Smukler, 2005). This is important to consider in

the context of ASC research which predominantly implicitly assumes Autism as ontological.

The way in which this stance has impacted on the ASC literature and the relevance for

diagnosis between the sexes/genders is discussed in the following sections.

Diagnosing ASC: Relevance for Research

Diagnostic criteria define and characterise ASCs by two core features: impairment in

social communication and interaction and restricted/repetitive patterns of behaviour, interest

or activity (APA, 2013). Autism is defined as a ‘spectrum condition’ because the severity and

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presentation of these symptoms show an extreme degree of variation. Symptoms of autism

are said to be present in early childhood and continue throughout the lifespan. In the first two

years of life, social deficits used to diagnose ASCs include a lack of joint attention, failure to

show interest towards others, lack of shared play and not responding when called (Ozonoff,

Williams, & Landa, 2005). In addition, children commonly present with a range of additional

symptoms, including sleep disorders, gastro-intestinal problems and anxiety and depression

(Mazzone & Vitiello, 2016).

The lack of a definitive cause, or marker for autism makes ASC diagnosis difficult.

Assessment relies on many sources of information and the diagnostic process includes

measures of parental report, child observation and interaction, and the use of clinical

judgment (Filipek, Accardo, Baranek, Cook, Dawson et al., 1999). Best practice measures

used include the Autism Diagnostic Interview‐Revised (ADI‐R; Lord, Rutter, & Le Couteur,

1994), a semi-structured interview conducted with parents and observational measures such

as the Autism Diagnostic Observation Schedule, Second Edition (ADOS-2; Lord, Luyster,

Gotham & Guthrie, 2012). This and other ‘gold standard’ instruments depend on subjective

observations or experiences of caregivers and/or self and clinician observation and

assessment. Therefore, parent’s and professional’s experiences of ‘normal’ are inherent

within decisions, and are in turn likely influenced by cultural context. The predominance of

research investigating differences in autism presentation between girls and boys has mostly

overlooked this context (Kseib, 2018).

Prevalence of Autism Between the Sexes/Genders

Prevalence studies show that ASC without coexisting cognitive impairment (high

functioning ASC; HFASC) are diagnosed more commonly in males than females, with the

male:female ratio reported ranging from 6:1 to 16:1 (Baird, Simonoff, Pickles, Chandler,

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Loucas, et al., 2006; Fombonne 1999, 2002, 2003; Scott, Baron-Cohen, Bolton & Brayne,

2002; Volkmar, Szatmari, & Sparrow, 1993). Moreover, evidence suggests that females who

are diagnosed with HFASC are diagnosed significantly later than males with the same

diagnosis (Begeer, Mandell, Wijnker-Holmes, Venderbosch, Rem et al., 2013; Goin-Kochel,

Mackintosh, & Myers, 2006; Shattuck, Durkin, Maenner, Newschaffer, Mandell et al., 2009).

Studies also suggest that the age of first concern for individuals with HFASCs is significantly

later for females than for males, and that girls are brought to clinic later than boys (Begeer et

al., 2013; Rynkiewicz & Łucka, 2015).

There is a suggestion that such sex/gender discrepancies could be the result of

misdiagnosis and/or under-reporting by caregivers and parents (Giarelli et al., 2010; Gillberg,

1993; Kim et al., 2011; Mattila et al., 2011). It has been hypothesised that this results from a

difference in the way autism is expressed, or distinctive ‘phenotypes’ between sex/genders

(Rivet & Matson, 2011). A review of the literature was conducted to explore research on how

the differences in expression of HFASC between girls and boys is understood to date (Kseib,

2018).

ASC Presentation Differences Between the Sex/Genders

Existing evidence suggests that there are both similarities and differences between

males and females in symptoms on diagnostic measures; generally, no differences have been

found in overall scores on social communication (Frazier, Georgiades, Bishop & Hardan,

2014; Holtmann, Bölte & Poustka, 2007; Kumazaki, Muramatsu, Kosaka, Fujisawa, Iwata et

al., 2015; May, Cornish & Rinehart, 2014; Solomon, Miller, Taylor, Hinshaw & Carter,

2012; Supekar & Menon, 2015), but there were indications of difference between the

sexes/genders in subscales (Hiller, Young & Weber, 2014; May, Cornish & Rinehart, 2016).

Mostly, females with HFASC showed less severe Repetitive and Restricted Behaviours and

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Interests (RRBIs) compared to males (Frazier et al., 2014; Hiller et al., 2014; May et al.,

2016; Solomon et al., 2012; Supekar & Menon 2015; Wang, Deng, You, Chen, Li, et al.,

2017), and this pattern was found in typically developing (TD) populations too (May et al.,

2016). However, few studies measured the quality of impairments as opposed to the severity

of impairments.

One difficulty with the current research is that most studies investigated differences

by comparing male and female HFASC presentations using already established diagnostic

measures. These measures may have low validity in detecting the ‘female phenotype’ of ASC

and therefore may not be sensitive to possible differences between the males and females

(Rivet & Matson, 2011). Kopp and Gillberg (2011) suggest that diagnostic tools are moulded

around the male phenotype identified by Kanner (1943) and Asperger (1944), and thus lack a

sensitivity towards the subtle symptoms of autism that females may display (Yaull-Smith,

2008). Their revised screening tool (Autism Spectrum Screening Questionnaire; Ehlers,

Gillberg & Wing, 1999) showed that endorsement of certain items varied according to

sex/gender highlighting the deficient sensitivity of traditional measures for girls which are not

likely to detect more subtle differences. Additionally, it is likely that ASC female participants

used in current research fit the ‘male’ ASC profile and were diagnosed for this reason.

Furthermore, the measures rely on scores that are rated by clinicians and parents. By

comparing scores, most studies assume that ratings represent an objective record of observed

symptoms. However, where studies used other designs, consideration of contextual

information about perceptions of ‘symptoms’ was valuable in highlighting why signs of

autism may be more or less apparent and/or perceptible by others, according to the child’s

gender. For example, using observational data from a school playground, one qualitative

study reported that the way in which TD boys and girls play in contrast to HFASC boys and

girls may mean that social exclusion may be more obvious and observable by others for boys

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in comparison to girls with HFASC (Dean Harwood & Kasari, 2017); girls with ASC tended

to stay in close proximity to social groups, perhaps masking social challenges from

onlookers. TD boys’ play tended to be structured making it easier to spot ASC boys, who

were often wandering alone apart from the game. This and other similar studies (Dean,

Kasari, Shih, Frankel, Whitney et al., 2014; Rynkiewicz, Schuller, Marchi, Piana, Camurri, et

al., 2016) highlight the lack of objectivity of diagnostic ratings that some studies assume.

They additionally show the value of qualitative studies in understanding why girls may not be

perceived as struggling in certain situations, or by certain people.

Many studies in the review used TD children as controls, and some found differences

between the sex/genders on ASC measures in TD populations. If we consider autism as a

deviation from ‘normal’ typical sex/gender differences should be accounted for. Faherty

(2006) highlights the significance of gendered expectations by suggesting that society expects

young girls to become engrossed in hobbies whilst rejecting more rigid interests in boys,

priming the autism ‘spotlight’ to land on boys rather than girls. Research suggests that the

saliency of symptoms is culturally shaped; Daley (2004) found that in India, qualities of

quietness, withheld emotion and keeping to oneself are interpreted as ‘good’ by parents, as it

means their children are ‘trouble-free’. Additionally, evidence suggests that we make

assumptions automatically and unconsciously, evaluating ourselves and others according to

cultural perceptions and stereotypes (Chatard, Guimond & Selimbegovic 2007). Therefore, a

purely biological understanding of proposed sex/gender differences is limited as it fails to

account for social constructions at play in our perceptions of ourselves and others.

In summary, it may be that, for females, some autistic symptoms are not noticed due

to a context which masks difficulties (Dean et al., 2017), or because they are seen as socially

acceptable in females. It is also likely, that we unconsciously account for gender expectations

and differences seen in neuro-typical populations, when we observe children. Diagnostic

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ratings have been taken and used as observable and objective ‘truths’ in the research. This

emphasis on comparing males and females’ diagnostic scores means there is a need to

explore in depth the quality of how others perceive and make sense of children and

adolescent’s behaviours and expressed feelings before ASC diagnosis. Due to evidence that

girls are brought to clinic for assessment later than boys (Rynkiewicz & Łucka, 2015) and

that parents are usually the first people to start suspecting that a child has autism (Sicherman,

Loewenstein, Tavassoli & Buxbaum, 2018), a study that explores parent’s perceptions of

their daughters with HFASC is relevant.

Aim and Research Questions

To date, research measuring the severity of symptoms has dominated the literature in

an attempt to understand how males and females with HFASC differ in their presentation. As

yet, an understanding of how HFASC girl’s behaviours are made sense of by their parents,

and the role this plays in gaining diagnosis has not been established. In line with this, the aim

of the study presented is to explore parent’s personal narratives of their daughter’s diagnosis

in order to further our understanding of why HFASC girls are brought to clinic and diagnosed

later than HFASC boys. The following research questions will be addressed:

1) How do parents make sense of their daughters’ behaviours before diagnosis of an

Autism Spectrum Condition?

2) How do the daughters’ behaviours come to be perceived as being unusual or

requiring of diagnosis? And related to this;

3) Why is diagnosis sought at particular points in time?

In answering these questions, it is hoped that a contribution can be made to better

understanding parental decision making within their social context. In turn, this knowledge

might help professionals to know how to better support parents who notice ‘difference’ or

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feel they need help. Overall, the study endeavours to contribute to the gap in research that

considers the role that parents play in perceiving their child’s behaviour as unusual or

requiring diagnosis and thus precipitating an eventual diagnosis. It is hoped that undertaking

a narrative analysis will allow for a more nuanced, culturally contextualised understanding

around the observed ‘signs’ of autism for girls.

Choice of Research Methodology

Qualitative methodology seeks to enhance understandings of the meanings individuals

bring to events and processes within their lives, and how their perceptions are shaped by the

social world around them (Miles & Huberman, 1994). Due to a gap in understanding of the

social and cultural landscape in which diagnosis is made, qualitative methodology was

identified as the most suitable way to explore the research questions.

The narrative approach is underpinned by the assumption that people organise life

events as stories and is concerned with understanding how events, values, past experiences

and future possibilities are made sense of and contribute to the way people view and

experience the world (Riley, Hawe & Shiell, 2005). A narrative analysis was selected because

this allowed for consideration of how participant stories were likely to have been influenced

by the context, which fits well with the focus of the research questions. Narrative analysis

assumes that story-telling serves a purpose in giving meaning to experiences within a broader

context of other stories and situations (Murray, 2003; Riessman, 2008). Therefore,

consideration is given to how a person’s story is influenced by those of other people, as well

as by broader narratives such as those about ability, gender and age. Again, this is relevant as

the research questions seek to enhance understanding of parents’ sense making in relation to

broader narratives such as those about gendered behaviour. The narrative frame is also

explicit in its recognition of co-construction between the narrator and researcher during the

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story-telling and interpretation (Riessman, 2008) making it possible to consider my own

experience and interactions in the context of participants’ stories (Plummer, 2001).

Methods

Participants and Recruitment

Participants were recruited from ASC support groups on a social media website using

an online advert (Appendix B). Appendix C outlines detail on the recruitment process.

Inclusion Criteria:

Parent or primary caregiver of a girl with ASC (or equivalent)

ASC diagnosis was made within a year of recruitment

Parents/caregivers were able and willing to be interviewed

Daughter between the age of 8 and 18 years of age on date of diagnosis

Exclusion Criteria:

Daughter had a diagnosis of a learning or intellectual disability or signs of cognitive

impairment.

Children who had received a separate mental health diagnosis were included in the study

given that co-morbid difficulties are common.

Recruitment took place over a six-month period (July-December 2017); 54 parents

expressed interest. ASC diagnosis and other inclusion/exclusion criteria were then verified by

parental report over email. The exclusion criterion was checked by asking parents about any

known learning disability and their daughter’s place of education (i.e. mainstream or other).

Nine parents met the inclusion and exclusion criteria used for recruitment and were sent

further information (Appendix D). Five parents responded to this email confirming suitability

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for the study and agreed to take part. The parents were then invited to meet for an interview

with the researcher either at the University of Surrey, a private community function room, or

participants’ homes. Due to distance, one of the participants was also given the option of

having their interview over Zoom, an online platform. Four interviews were held in

participant’s homes (one of which was held over Zoom) and one was held in a community

function room. Informed consent was obtained from all the five individual participants

included in the study (Appendix E).

All participants were biological mothers of the child with autism. The children were

aged between 8.8–11.6 years at diagnosis and had been given a diagnosis between 2-10

months prior to interview. Before the interviews started, demographic information was

collected by the researcher (Table I) from the participant (Appendix F: Interview Schedule).

Table I.

Participant demographic information

Mother’s Pseudonym

Daughter’s Pseudonym

Diagnosis Age at Diagnosis (years)

Age at Interview (years)

Time Since Diagnosis at Interview (months)

EllaFiona High Functioning

ASD11.1 11.9

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Emily Sophie ASD 8.6 9.0 5

Tessa Angie High Functioning ASD

10.6 11.0 5

Claire Abbie ASD 10.10 11.0 2

Helen Caroline Asperger’s Syndrome 11.6 11.9 4

Interviews

Before the interview started, the research was explained by going through the

information sheet (Appendix F). Participants were reminded that the research focus was on

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how they came to understand and make sense of their child’s behaviours before diagnosis. An

interview schedule was created in order to encourage the detail of the story to be told, rather

than a question and answer approach (Riessman, 2008). The interview consisted of one main

question, which invited participants to ‘tell their story’, and additional prompt questions for

exploring areas of interest (Appendix F). I focused on actively listening in order to encourage

the process using verbal and non-verbal prompts, whilst reflecting on how my presence was

leading to a joint construction of the narrative (Crossley, 2000). Interviews lasted between

41-104 minutes (average 76 minutes) and each was digitally recorded and transcribed

verbatim. I reflected on my experience of each interview in a journal.

Analytic Procedure

I chose to use a structured process (Crossley, 2000) for analysis to allow for

transparency in the process (Tracy, 2010).

Step 1: Reading and familiarising

I transcribed the first two interviews but due to time limits had the following three

professionally transcribed. To capture the stories, it was considered sufficient to transcribe at

the level of the words and conversational characters (e.g. laughter). I familiarised myself

with the data by listening to the recordings and re-reading the transcripts multiple times in

order to get an overview of the content and structure. I began to code and make notes in

relation to general themes, patterns and language.

Step 2: Identifying narrative tone

Narrative tone is the manner in which a story is told. The plot of a narrative takes a

certain shape, which gives it a certain ‘emotional flavour’ (Murray, 2003). This also conveys

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something to the audience about how they should interpret it (Andrews, Squire, Tamboukou,

1995). The shape or genre the narrative takes may be identifiable, for example as a romance,

tragedy or satire. I attended to the manner in which narratives were told to make sense of

events and assigned each narrative a genre. I also began creating summaries of each narrative.

Step 3: Identifying imagery and themes

I looked for and considered themes (summaries of the fundamental points) and images

(visual images evoked in the listener) across each narrative and how these changed as the

narrative progressed.

Step 4: Weaving a coherent story

I put each narrative back into a coherent story similar to creating a biography of the

participant’s story, remaining close to the data by using quotes.

Step 5: Cross-analysis

This involved looking for commonalities and differences across narratives by

synthesising salient themes and building a framework to summarise all narratives.

Epistemology

I took a social constructivism (relativist) position which broadly asserts that an

objective truth cannot be discovered, and that our language constructs versions of our reality

within social contexts (Willig, 2012). This contrasts a realist position which assumes

‘external reality’ and ‘truths’ that ‘exist’ and can be discovered (Harper, 2012). This stance

shares with narrative psychology an emphasis on language as a tool for forming identity

(Gergen, 1985). I believe that our interpretations of what is and is not autism are embedded in

socially constructed standards of what is and is not ‘normal’. These are rooted in cultural

values and practices, thereby contributing to the production and transformation of people

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labelled with the disorder. By taking this stance I hope to build a more culturally

contextualised understanding of autism and give a voice to people that are not usually

considered ‘expert’ in their knowledge.

With regard to gender and sex, I take the position that the constructs of ‘male’ and

female’ are not solely reflections of naturally occurring differences in human beings but

bound up with the normative prescriptions of masculinity and femininity in culture (Burr,

2003 p.3). I believe that people experience and interpret other people’s behaviours in unique

ways, informed by their personal and social context and available social discourses.

Credibility

Allowing for consideration that narratives cannot be treated as an exact record or an

unveiled objective reality, to ensure credibility I observed Yardley’s (2000) principles of

quality qualitative research. Details about how these were observed can be found in Appendix

G.

Ethical Considerations

Ethical approval was sought and granted from the University of Surrey Faculty of

Health and Medical Sciences Ethics Committee (Appendix H). Potential participants were

sent an information sheet with no obligation to participate. Participants also went through this

with the researcher and were provided a space to ask questions to ensure consent was

informed. The main research question was open ended so participants could choose what

parts of their story they would like to tell, and were told that they could choose not to answer

any prompt questions. Participants could withdraw during the interview or any time up until

two weeks after the interview. Interviews were conducted in community locations that

permitted privacy and confidentiality. Recordings were stored on an encrypted device and

20


deleted following transcription. Participants were assigned pseudonyms and identifying

information was amended from transcripts to preserve anonymity. Additionally, only brief

examples of transcripts will be included in this report rather than full narratives.

Results

Overview

This section begins with summaries of the narratives; these are abridged versions free

from interpretation and keeping as close to the participant’s language as possible. Tone,

narrative impression, and key themes are presented providing a context for each participant in

which interpretations can be situated (Riessman, 2008). Extensive individual analyses cannot

be presented due to space limitations, however detailed examples can be found in the

appendix.

My interpretations of similarities and differences in genre and narrative technique are

then outlined. Following this I present themes that emerged from a narrative-thematic

analysis in relation to sense making in the diagnosis of autism. The analytic process sought to

notice patterns of beliefs or experience within the context of individual narratives, rather than

attempting to unearth a universal process or experience.

Narrative Introductions

Ella’s story about Fiona

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Ella described Fiona as a ‘really difficult baby’ who cried a lot and never slept ‘from

day one’. As Ella’s first baby, she did not know ‘what’s normal and what’s not’.

Academically, Fiona had ‘always been extremely clever’ whilst school said that ‘socially

she’s slightly below [her peers]’. At around the age of six or seven, Ella described that Fiona

had ‘anxiety around everything’. After Child and Adolescent Mental Health Services

(CAMHS) rejected a referral, Ella and Fiona ‘ended up going to see a private psychologist’.

Around the same time, Ella ‘mentioned the word meltdown’ on a Facebook group for parents

who have ‘children who are academically ahead’. A parent asked whether Ella’s daughter had

autism and sent her a link ‘to something around girls with autism’. Receiving this, Ella

remembers thinking ‘don’t be silly’, but then ‘started doing research on signs and symptoms

in girls’ and ‘found this checklist’. Ella said ‘it was just like somebody had written everything

about Fiona on there’ and that it was ‘uncannily scary’. The Clinical Psychologist seeing

Fiona ‘did not know’ if Fiona had autism, and wrote to Fiona’s GP recommending specialist

assessment. ‘CAMHS rejected it’ and recommended a ‘six-week anxiety management group’

for both Ella and Fiona whilst they waited to see a paediatrician. Before the group began, Ella

‘mentioned autism’ to the professionals and when the group ended Ella said that she was still

concerned about Fiona’s ‘negative thoughts’. They said that Fiona is ‘not autistic and if she’s

behaving this way still after having all these sessions you need to look at how you’re enabling

her behaviour’. Ella ‘stormed out’ feeling blamed and frustrated to be ‘told that it’s your

fault’. In the two year wait for diagnosis which Ella ‘put on the backburner’ Fiona’s ‘mental

health went downhill’ and she ‘started talking about wanting to kill herself’. She was

diagnosed with OCD following an emergency appointment with CAMHS. Fiona’s therapist

did not think she was autistic but advised they attend the assessment so that Ella could ‘cross

that off the list of the things that are wrong with her’. Fiona’s teachers also tried to reassure

Ella that ‘everything’s fine’. However, after ‘about six appointments’ and ‘almost two years

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[from referral]’ Fiona was diagnosed with high functioning ASD in January 2017 at the age

of 11 years.

The tone of Ella’s story was thorough, matter of fact and methodical, taking the

listener through the journey in an ordered style, using ‘the checklist’ to describe the ‘signs

noticed’. A core theme of Ella’s story was ‘feeling blamed’ by professionals followed by a

shift in power to ‘becoming expert’.

Emily’s story about Sophie

Emily ‘always knew that something was different’ about Sophie. Sophie was ‘really

bright’, ‘talking in sentences by eighteen months’. She was ‘really chatty and really friendly’

and ‘seemed to get on well with adults’ but ‘less so with children’. Emily had a favourite toy

which ‘had to go everywhere’ and a favourite number. With hindsight, Emily perceives ‘all

these little things’ as ‘glaringly obvious [signs of autism]’. At the time, Emily thought these

were ‘weird quirks’ or ‘down to the hypermobility’. Each school year, Sophie had ‘difficulty

transitioning to the next year group’. In her first term of year two, when she was six, she

came home saying ‘I wish I was dead’. Emily went in to see the teacher and also went on a

‘hypermobility Facebook page’ asking ‘what this might mean’. On there, someone sent Emily

a web-link to Tania Marshall’s, Asperger’s Syndrome in Bright Young Girls. Emily described

disbelief and a ‘lightbulb moment’ because Sophie ‘ticked thirty out of forty’ traits listed.

Emily expressed concern to the GP about Sophie’s distress and her thoughts that ‘it might be

autism’. Whilst waiting for assessment, Emily went to a ‘support group’ and ‘went on a

course to help [Sophie]’. In this time Sophie’s school ‘denied that there were any issues’

saying, ‘there’s nothing wrong with her, she’s absolutely fine’. At 8 years-old, ‘nearly two

years’ after first referral, Sophie was diagnosed with ASD.

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The tone of Emily’s story was dramatic and emotional as Emily recounted her

daughter’s distress. Her story conveyed frustration and anger towards Sophie’s school for

‘not believing her’. The tone became more positive when Sophie received a diagnosis which

she felt ‘explains everything’.

Tessa’s story about Angie

Tessa described Angie as an ‘awful baby’ that ‘didn’t sleep’ and ‘wouldn't even at

five weeks old, let anyone else hold her’ because ‘she'd scream and scream and scream’.

Angie was ‘early talking’ and ‘learn[ed] quickly apart from colours’. Watching a television

programme, Born Naughty on which a girl was diagnosed with Autism, Tessa recognised

‘one tiny thing’ [looking out the corner of her eye] that Angie did. Tessa started to research

autism and ‘it all clicked into place’. Five months later Tessa ‘plucked up to the courage’ to

say to a teacher, "I think there's something there"’. Tessa worried that school wouldn’t

‘believe’ her because ‘they don’t see what I see’. However, Angie’s teacher was

‘understanding’ and ‘got the Ed Psych [Educational Psychologist] to see her’. The contrast

between Tessa’s ‘report’ and the school’s ‘perfect pupil’ report ‘raised alarm bells’ for the

psychologist, who ‘made a referral’ for specialist assessment. After ‘nearly two years’ Angie

was diagnosed with High Functioning ASD, in a ‘twenty-minute’ appointment, at the age of

ten years.

The tone of the narrative was upbeat and comical. Many anecdotes from Angie’s life

were given but there were not many explicit links made with autism. The theme of Angie

needing safety to show her ‘real self’ stood out. Other core themes noted were, Angie as

inherently ‘good’ but ‘needing control’ and Angie ‘needing to understand’. The age of eight

was significant in enabling difficulties to be seen, due to increasing complexity of social

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rules. Tessa also talked about the significance of Angie being her first child, in not suspecting

autism.

Claire’s story about Abbie

Abbie is Claire’s youngest child of four. Abbie’s brother Ed also has a diagnosis of

ASD. When Abbie was eight her teachers ‘were having problems with her behaviour’ and

‘wondered if she was bipolar’. Claire went to the doctor who thought Abbie was

‘overthinking things’ and referred her to a clinical psychologist. In the initial meeting, the

clinical psychologist asked whether Claire had ‘considered was she autistic? And then put her

on the autism pathway’. Claire reflected that she thought she would have been ‘more aware’

but that Abbie is ‘very different to how Ed is’. For Claire, meltdowns were ‘just a way of life’

and she had got ‘used to it’. She described Abbie as ‘difficult at school’ for example, trying

to run away. Eighteen months after being put on the ‘pathway’, Claire was diagnosed with

ASD at the age of 10-years-old.

Claire’s narrative was matter of fact in tone, injected with dry humour. Claire was

relatively passive before diagnosis. Like Tessa, anecdotes were given without explicit links

made to autism. The core themes in Claire’s narrative included: difference in son and

daughter’s presentation of autism; autism offering a useful alternative explanation to

naughtiness and; others seeing behaviours as problematic where Claire did not.

Helen’s story about Caroline

Helen has two children, ‘a boy and a girl’, both ‘on the spectrum’ and ‘really, really

different’ [from one another]. Helen described her older child John as ‘demanding’, having

‘challenging behaviour’ and ‘needing attention’ in comparison to Caroline as ‘extremely

calm, very friendly, very sociable, very outgoing’ and ‘much more loving and considerate’.

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In reception class Caroline’s teacher, who had also taught John ‘took [Helen] aside’ and said

‘"Look, the brother was always obsessive about reading but this girl is obsessive about

drawing"’. Although she assured Helen that ‘it doesn't necessarily say that she is on the

spectrum’ it made Helen ‘watch things more’. Helen’s view of Caroline constantly changed;

‘one moment, you look at them and you'll see something what you think is spectrum, then the

next minute you see stuff that is completely not’. Because it had taken a long time for John to

‘go through the system’, Helen remembers thinking, even though it’s ‘little things’, ‘"I've got

to start her now or she won't get seen in time"’. Helen also went to support groups and learnt

about girls ‘on the spectrum’ and ‘started to really wonder because [Caroline] was starting to

have more and more problems at school’. Although Caroline was getting ‘support’ from

school, Helen asked school for a formal autism assessment. ‘Funding problems’ meant that

this was not possible, and Caroline’s father was also reluctant for Caroline to be assessed so

an ‘implant CAMHS worker’ helped to facilitate conversations about ‘whether Caroline

should be referred further’. Caroline’s parents reached agreement ‘that she could be seen’.

After sending ‘the paperwork off’, ‘they knocked it back completely’. A referral through the

GP also ‘got completely knocked back’. Helen was frustrated because the tests ‘are totally

geared to boys’ and felt that they had not ‘brought out her difficulties properly’. The ‘worker’

asked again for Caroline to be seen and suddenly, they were ‘seen within a week’. Caroline

was diagnosed with Asperger’s Syndrome at this appointment, when she was 11-years-old.

Helen’s narrative was detailed and descriptive with use of visual imagery creating a

cinematic feel. Though emotions were talked about, this was done with disconnection. The

tone of Helen’s narrative was one of empowerment through the expertise of having a child

with autism.

Cross Analysis: How Were Stories Told?

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Narrative analysis takes the view that stories are not created in isolation. In this

context, all participants had been through the process of having their daughter diagnosed with

ASC, so this might have impacted on how stories were told (narrative tools used to tell

stories) and what was said (narrative themes).

Genre

Genre is a way of categorising stories. Two broad narratives emerged (Table II): one

of a ‘Quest’ in overcoming resistance to be believed (Ella, Emily and Helen) and one of a

‘Guided Journey’ in which the characters were assisted by professionals (Tessa and Claire).

Examples, along with an analytic discussion of these genres are included in Appendix J.

Table II.

Overarching Genres Identified

Genre Description Participant

Quest This narrative takes the listener on a journey which centres around the search for an answer or help. This entailed many hurdles and setbacks, including difficult characters getting in the way. There was also a sense of desperation from the parent. These narratives contained an important moment of insight that lead to a dramatic transformation in understanding of their child. These stories ended triumphantly with victory in diagnosis.

Helen, Emily, Ella

Guided Journey

These narratives were observational and used humour to enhance descriptions of difference from the norm. Although characters were helped in their journey towards diagnosis, dry humour was used to convey that others did not understand the whole ‘truth’ about their daughter and/or events, in this way placing knowledge more with parents than professionals.

Tessa, Claire

How is Autism Made Sense Of? Themes Across Narratives

In exploring the sense making process, superordinate themes of ‘Journey Towards

Diagnosis’ and ‘After Diagnosis’ emerged. Table III shows these and main emergent themes.

Due to limited space only the first superordinate theme, and related sub-themes will be

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presented as these directly address the research questions. The ‘After Diagnosis’ sub-themes

are presented in an extended analysis (Appendix L).

Table III.

Superordinate and Emergent Themes

1.0 ‘Journey Towards Diagnosis’

1.1 A Safe Place To Show Herself1.2 The Tipping Point1.3 Questioning Normality 1.4 Feeling Judged and Blamed

2.0 ‘After Diagnosis’

2.1 Release from Responsibility2.2 Legitimacy and Validation2.3 Looking Through The Autism Lens

1.‘Journey Towards Diagnosis’

1.1‘A Safe Place To Show Herself’

All the participants talked about their daughters acting, conforming or being different

in public or with others in comparison to how they are in a safe place (specifically at home,

or with their mothers). Ella and Tessa talked about their daughters hiding parts of their

identity, by not being themselves, or acting due to a fear of the ‘real self’ being seen:

Ella: ‘[Fiona] says…“That's why I'm so good at acting, because I do it all day”’

Tessa: ‘She doesn't want to be herself. Because she doesn't want [friends] to see her,

so she's got this whole other person for her friends than she is at home.’.

Within the narratives parents describe their daughters as ‘hiding’ ‘their ‘real’ selves due to an

expectation of rejection. Shame may be inherent to the motivation to hide, as parents describe

their daughters as not liking or wanting to be themselves. The ‘real’ self is only shown when

the child perceives safety and unconditional acceptance from others. In doing this, the girls

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show their assumptions that there are better ways of ‘being’ (hence putting on an act), and

that they know what will be acceptable to others. Tessa described Angie seeking privacy

when uncertain from a young age:

Tessa: ‘If it was a way she thought she couldn't behave, or she was unsure if it was a

way to behave, it would be done in private’.

Again, this shows a reluctance for Angie to show herself, when uncertain about how this will

be received. This suggests a strong concern for how she is viewed by others as well as

uncertainty about whether particular behaviours are acceptable to others or how they will be

received by others. In this way others are seen as potentially unsafe, whilst privacy is

perceived to be safe.

All participants described their daughters ‘holding in’ their emotions, wanting to be

seen as ‘good’ or to please others. Tessa said this happened from early on in Angie’s life.

This perhaps unveils the children’s assumptions that it is not acceptable to show some

emotions in public:

Tessa: ‘She'd always say she wants to go home whenever she was upset, and very

often not cry’

Emily: ‘That’s the problem. She has to hold it in because she’s been taught to be a

good girl and so she doesn’t want to show other adults that she actually wants

to let rip’

This was significant for some parents in meaning that there had to be a ‘fight’ to be believed

because of the difference in their child’s presentation at home and school.

Certainty of acceptance, love and safety were seen as central to the girls being able to

reveal their real feelings and/or selves:

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Emily: ‘She knows I’ll love her no matter what and so she can show me.’

Tessa: ‘I was like, “Why do you only behave like this for me?” And she was like,

“Because you'll always love me” [laughs]…I think that's her way of sort of

saying this is her safe place…she knows that me and her sister are sort of

accepting of it’.

The children were often portrayed as being pre-occupied or ‘overly aware’ of others in their

attempt to please. This meant stringently abiding by rules, in order not to be seen as

‘naughty’:

Tessa: ‘From nursery onwards she was just very, very conformist and very, sort of

like, she'd always be scared of being told off…she would follow all the rules’.

This ‘over-awareness’ was sometimes mentioned by many parents as not fitting with their

perceived ideas of autism, contributing to the delay in autism being raised as a ‘flag’.

1.2‘The Tipping Point’

Ella and Helen talked about their daughters’ levels of distress reaching a peak at the

age of nine years. Emily described this happening when Sophie was around seven:

Ella: ‘She just started screaming saying “can you put your knife away put the knife

away because I don’t know I’m going to go and get that knife and I don’t know

what I’m going to do with it”’

Emily: ‘She came home about November time. “I wish I was dead. Why don’t you just

shoot me”’

This tipping point led to, or accelerated the search for help. For Claire, Abbie’s school

30


became concerned when she started trying to run away. Being an overt behaviour, it makes

sense that this was noticed by school. Autism was described to suddenly become more

obvious. Emily and Ella hypothesised that this was due to increased social challenges:

Tessa: ‘When you're five or six, rules of play are really easy. You don't hit and you

share…It's a transition from really simple, let's throw a ball to each other to,

more complex. Sort of they're finding their place in the world’.

Here, Tessa indicates that an increase in social complexity is what she perceives as leading to

the increased visibility of her daughter’s difficulties.

1.3‘Questioning Normality’

All parents recounted a pivotal moment which initiated a nagging doubt or

questioning of normality. For Emily and Ella, this happened online, seeking help on social

media support forums, for Tessa watching a television programme, whilst for Helen and

Claire, this came from professionals:

Tessa: ‘And I start watching it and I was like, “Oh, Angie does that”’

Parents described a ‘backdrop’ of autism from which they started questioning:

Helen: ‘I think it kind of made me watch things more’

Ella: ‘But then it was just there in the back of my head’

Once the seed was planted, most participants researched autism and reached a moment of

realisation that perhaps things are not ‘normal’:

Ella: ‘I think that when you have all these things that you think are normal and then

you see them all written in a list, you start questioning whether things actually

are normal’

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Emily: ‘It listed about 40 different things and she ticked about thirty of them (gasps)’

Tessa: ‘And it, kind of all clicked into place.’

For these parents, reading and watching particular media sources shaped their perceptions of

‘normal’. This changed perceptions of behaviour that were previously seen as normal. For

some this resulted in a ‘light bulb’ moment of understanding.

All parents made comparisons both explicitly and implicitly when making sense of

their daughters and attempting to understand ‘normal’. Comparisons were continually made

in relation to; age; gender; common ideas of autism; their child at younger ages; peers;

siblings; themselves as a child; and autism checklists. For example:

Tessa: ‘I was just like, “What five-year-old thinks of that?”’

Helen: ‘No other child is doing that’

Helen and Tessa noticed differences in their daughter’s interests compared with peers:

Tessa: ‘She's really interested in all of that stuff, whereas, like I said, her friends are

like make-up and boys and Instagram’

Helen: ‘…they were talking about, it was boys…and Caroline was just zero interested

in that’

Comparisons both accelerated and decelerated diagnosis. Claire talked about meltdowns

being ‘normal’ in the home, meaning that she overlooked these, ‘I think because I have Ed

[Abbie’s brother] already that [laughs] meltdown it's just a way of life.’ Similarly, for Emily,

comparing Sophie’s difficulty in making friendships to her own, slowed down diagnosis, as

difficulties were not seen as unusual, ‘…but then I was the same’. These examples highlight

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the importance of context and personal experience in parents’ perceptions of ‘normality’.

Tessa compared Angie’s behaviour to those of her peers who had started to seek separation

from their parents and push boundaries:

Tessa: ‘It's that rigidity, rigidness to the rules makes her stand out a little bit, because

11-year-old girls, they are a bit of rule breakers, aren't they?’

This example highlights Tessa’s perception of what the ‘norm’ is for an 11-year-old girl,

derived from her observations or experiences of what other girls of the same age do, or what

she hears of them doing. In other words, Tessa draws on the dominant stories and cultural

understandings of ‘normal’ particular to her cultural context. Parents also described how their

ideas of autism did not ‘fit’ with their daughters:

Ella: ‘I mean she was clever. She could talk and in my head autism was for children

who are developmentally delayed’

Helen: ‘You wouldn't expect autistic children to just speak so freely and so much to

strangers’.

The way in which comparisons were made by participants, brings to light the many factors

that impact on our judgements of what is and is not ‘normal’, based on our own ideas and

experiences, and those of the dominant culture we live in. The examples of comparison

highlight the way in which parents make sense of their children in relation to others, within

the context of age and gender and societal ideas of autism.

1.4‘Feeling Judged and Blamed’

Like their children, parents felt worried about how others (e.g. school, partners) would

33


perceive them in seeking diagnosis. Some assumed they would not be believed:

Tessa: ‘They're gonna think I'm like one of these mum’s that go, “I want some sort of

label for my child” and aren't gonna believe me’.

For Emily, Ella and Helen this became their reality. They did not feel supported or believed

by school and felt that others did not see, or refused to see their daughters in the same way

they did:

Ella: ‘I got the impression I was just being a paranoid mum’

[Describing school’s view] ‘She's absolutely fine. She's got friends. She's

doing well academically. There's nothing that we can see’

Helen: ‘[My ex-husband] was saying that I was making it all up’.

This suggests that in understanding difference, parents use the opinions of others as a

reference point to check their own perceptions against. Other people’s views are perceived to

be important in understanding their child’s behaviour as ‘different’. Thus, they appear to

make sense of their child in the context of both their own and other people’s views and this

becomes problematic when other’s views diverge from their own. Given their daughter’s

difference in behaviour at school and home, most parents found the reliance on behavioural

difficulties at school for diagnosis problematic. Emily described questioning herself:

Emily: ‘You know you do question yourself particularly when school are like don’t be

so silly. You know there’s nothing wrong with her, she’s absolutely fine’

Where there were discrepancies in perceptions (between parents and school) this resulted in

participants putting up a fight to be heard, making the journey emotionally difficult:

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Emily: ‘You just get angry when you’ve had two years of battling with school’

Emily also alluded to feeling that she was not seen as a credible source, ‘It’s not come from

us, it’s come from a professional’. There was an indication that some parents felt judged or to

blame for their daughter’s difficulties:

Ella: [Group facilitator] ‘said “…she’s not autistic erm and if she’s behaving this

way still after having all these sessions you need to look at how you’re

enabling her behaviour”…it’s really frustrating and then to be told that it’s

your fault.’

In the above example, there is an underlying message that ‘bad’ behaviour is either caused by

autism or parenting. Tessa also spoke about feeling embarrassed by Angie’s behaviour,

perhaps implying that she felt responsible for it:

Tessa: ‘It was shyness, but it was bordering on rude. And it would sort of embarrass

me’.

Interestingly, diagnosis meant some parents felt a release from this perceived blame about

their daughters’ behaviours. Diagnosis brought new perceptions about the locus of control of

behaviour, whereby parents and daughters were seen as not being able to change certain

behaviours. This is explored further, along with the other sub-themes, in the ‘After

Diagnosis’ extended analysis (Appendix L).

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Figure I. Proposed model of sense making for parents with a daughter with ASC

36

Questioning Normality

-Online information changing perceptions of normality

-Seeing through an autism backdrop-Making comparisons

Need for explanation

The Tipping Point

Build a case

Release from responsibility, blame and judgment

(Child and Parent)

Increasing social

demands

A Safe Place To Show Herself

-Sensitivity to safety -Acting or not showing ‘real’ self

-Not showing emotions

Diagnosis

Not feeling supported / understoodUncertainty

about what others want

Feeling Judged and Blamed


Discussion

This study explored how parents made sense of their daughter’s behaviour before they

were diagnosed with autism. In presenting how stories were narrated and salient themes across

narratives, a tentative model (Figure I) was proposed to conceptualise ways in which behaviours

are understood and signs of autism are noticed and considered. The salient themes that emerged

centred around; girls ‘showing themselves’ only when feeling safe, their distress peaking, parents

questioning normality, and parents feeling blamed, unsupported and judged.

Parents described their daughters ‘acting’ differently at school and at home; at school

doing everything they could to ‘be good’ then showing their ‘real’ selves at home. Their

daughters’ competency in acting to ‘please’, sometimes meant that parents did not feel heard or

believed by professionals when seeking help; some felt disregarded and powerless. Being ‘good’

and fitting in became increasingly difficult for girls to manage. Parents thought that this was due

to a context of: increased social complexity within their daughter’s peer groups due to social

‘rules’ becoming less obvious and; peer’s interests (e.g. make-up and boys) not fitting their

daughter’s interests. This often led to a peak in distress characterised by meltdowns at home. The

diagnosis of autism offered parents relief from perceived judgement that their daughter’s

behaviour was ‘naughty’ and/or caused by bad parenting. Previous studies have shown that

diagnosis is sought when a child’s level of distress means that further support is needed

(Baghdadli, Pascal, Grisi & Aussilloux, 2003). This study found that for some parents, feeling

blamed, judged or unheard was also a central experience on their diagnosis journey. Where this

was the case, diagnosis led to relief from understanding the self as a ‘bad parent’, and offered

parents legitimacy and a ‘voice’. In the process of ‘questioning normality’, parents made various

social comparisons in reference to gender, age, diagnosis of autism and themselves, highlighting

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socially and culturally shared ideas of what is, and is not ‘normal’. Parent’s perceptions of

behaviour also changed once autism was mentioned. Narrative theory suggests that scripts about

the self are continually redefined to make sense of experiences (Morgan, 2000). Participants

came to develop personal understandings of autism through sharing their stories with others on

online forums, doing research, and sharing stories with professionals. These findings may shed

new perspectives on understanding why it might take longer for girls to be diagnosed than boys.

Safety and Masking

Some suggest that females, ‘mask’ or ‘camouflage’ their difficulties during social

situations (Attwood, 2006) by either hiding behaviour that might be viewed as socially

unacceptable or ‘unnaturally’ performing behaviour deemed to be more ‘normal’ or socially

acceptable (Willey, 1999). It has been hypothesised that a girl’s level of social skill is just

enough to mask difficulties so that difficulties are not noticed until complexity increases

(Attwood, 2006). This study’s findings corroborated this but uniquely found that a sense of

safety was pivotal to the ‘whole self’ being shown. That is, girls might hide themselves and ‘act’

according to what they perceive others to want (including holding in ‘bad’ emotions), perhaps

due to shame or fear of rejection. This understanding assumes that girls are not necessarily

masking a specific difficulty, but rather they are extremely concerned about being seen as ‘bad’

and/or as different or not fitting in. This understanding of masking is slightly different to

previous understandings, as it functions to hide the self as a whole, as opposed to a specific

difficulty (i.e. lack of social skill). It also suggests the child is an active protagonist in the

situation; they attempt to act one way, rather than their abilities naturally masking difficulty. The

desire to hide the perceived ‘bad’ self, may relate to shame, which can be defined as a judgement

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of the whole self, which leaves a person feeling worthless, vulnerable, visible and powerless

(Miller, 1996). Shame is often considered as stemming from a belief that the self is defective,

flawed or no good (Schimmenti, 2012).

Additionally, parents said explicitly and implicitly, that safety was pivotal to this

‘masking’; when their daughters felt safe, or unwavering love, the masking stopped and their

‘real’ self was shown. When the mask was metaphorically lifted in safety, distress was often

expressed. Parents described that their daughters were extremely sensitive to feeling safe; safety

was not found in other adults, children or situations, leading the children to hide perceived

unwanted or unpleasant behaviours and emotions much of the time. This preoccupation with

pleasing others made the girls ‘overly aware’ of others, which did not fit with parent’s

perceptions of autism, delaying the time in which autism was on the parent’s radar.

Why Seek Diagnosis? Changing Understandings

Recent research has evidenced that people with ASC are more likely to have been

diagnosed if they have co-occurring problems (Posserud, Hysing, Helland, Gillberg &

Lundervold, 2016). This fits with this study’s findings, where an expression of distress often

paralleled an approach to professionals. However, distress was not sufficient for parents to

‘question normality’; for three parents feeling judged and/or not supported by professionals

additionally motivated a need for diagnosis. For one parent, it was school who first instigated the

diagnosis, due to ‘mood swings’ and behaviour problems at school.

Moreover, the diagnosis itself was not necessary for gaining support; two parents gained

support before the diagnosis was given, whilst another expressed that she was satisfied with

support offered by school pre-diagnosis. Despite this, parents still felt a need for a diagnosis.

39


Farrugia (2009) evidenced that a child’s ASC diagnosis was critical for parents to resist

stigmatisation. Similarly Russell and Norwich (2012) evidence that parents attempt to retain the

‘normal’ status of their child by either resisting ASC diagnosis, or through identification of ASC

and then trying to change society’s attitudes to de-stigmatise it. The present study similarly

showed that diagnosis offered relief from judgement, whether internal (self-criticism) or

external. Perhaps this was partly due to a perceived understanding of behaviour and emotion that

was previously inexplicable, and extremely upsetting (for example, suicidality).

Moreover, parents expressed that the diagnosis brought a greater understanding of why

their child behaved in certain ways. This exposes dominant cultural narratives whereby

diagnoses are seen as explanations in themselves, i.e. autism is causal to problems. Parents were

vague about how this new understanding was helpful (e.g. expressing that diagnosis meant

‘things could be put in place’). Some parents spoke about previous explanations of their

daughter’s behaviour and distress, expressing satisfaction of now knowing it was the autism

causing the distress. Thus, the autism explanation perhaps restricted understandings of why

behaviours were happening, and removed perceived choice about responding to these (i.e.

parents talked about having to parent in a certain way). Perhaps this relieved parents from

responsibility from socially dominant expectations that a child should be parented in a certain

way.

Narrative tone, as well as emergent themes, also suggested that diagnosis gave parents

legitimacy and a voice to assert their daughter’s needs, mostly at school. This might be needed

for parents of girls more than boys, given that ASC behaviour associated with boys is more

disruptive in school situations (Hiller et al., 2014), and so teachers may be more alerted to boy’s

40


needs without parents needing to assert these. Thus, rather than enabling access to practical

support, ASC diagnosis bolstered parents’ voices and perhaps helped them to feel less blamed.

Questioning ‘Normal’

The ambiguity of ASC as a label, and its construction by medical, media, cultural and

family discourses (Avdi, Griffin & Brough, 2000; Grinker & Cho, 2013; Huws & Jones, 2010)

allows for individuals with the diagnosis, and their families to interpret and construct its meaning

in different ways. Nadesan (2013) draws our attention to the socially constructed standards of

‘normalcy’ upon which the medical model stands and observes that before autism was

categorised as a disorder, associated social interactions may have been perceived as

‘eccentricities’ rather than ‘abnormalities’. The present study found that parents only started to

question normality when a person or situation raised the possibility of autism, rather than parents

noticing ‘abnormality’; it was only on looking back, through the lens of the present that signs

were noticed. This study also highlighted how checklists available online, shape understandings

of ‘normal’ and can be interpreted in many ways to fit with a child’s presentation.

Age was seen as an important factor by which signs became more obvious. Cridland and

colleagues (2014) evidence that a specific difficulty for girls with autism is the context in which

social interactions with other girls is more complex than those with boys. In this study, parents

also suggested that from the ages of seven to nine years old, their daughters found socialising

more difficult due to normal ‘rules’ of play being broken and challenged, becoming more

complex. This fits with previous suggestions that as girls transition into adolescence,

expectations from peers may be much higher than for boys, because typical female relationships

are characterised by complex relational skills, with interactions focused more on conversation,

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shared emotions and emotional support (Bauminger, Shulman & Agam, 2003; Hannah &

Murachver, 1999). Additionally, some parents thought their daughters did not have interests

similar to their female peers, for example boys and Instagram. These examples are particularly

relevant in terms of gender related norms and expectations and highlight how important these are

to account for more formally in assessment.

Parents also used others to check their perceptions of ‘normal’. Masking made this

difficult, especially where teachers did not perceive difficulty related to autism. This fits with

previous evidence that suggests that teachers do not rate ASC girl’s social difficulties as highly

on diagnostic measures compared to parents (Hiller et al., 2014). Hartung and Widiger (1998)

argue that individuals are more likely to be referred for assessment if they demonstrate social

inappropriateness or externalise distress. The current findings similarly show that if behaviour

was not disruptive or problematic at school, parents were not well supported in seeking

diagnosis.

Clinical Implications

These stories of diagnosis expose some challenges that schools and services need to meet

in terms of the support given both during assessment, and post-diagnosis. Policies have focused

on the length of the assessment process (NICE, 2011). Although participants waited for

approximately two years for their daughter’s diagnosis, this was not highlighted as problematic.

However, a lack of understanding and respect for parents, especially before diagnosis was

emphasised. The current research highlights the importance of families feeling heard and

understood and having their needs met, whether or not a diagnosis has been made. These needs

are undoubtedly varied and complex so a formulation driven approach which focuses on an

42


assessment of need rather than identification of symptoms would be useful when families are, or

would like to be, referred for assessment. This approach could also identify appropriate

interventions and consider other challenges and strengths within families that might otherwise be

missed when focus is unilaterally upon diagnosis. Formulation as part of a process of diagnosis

may help families to reflect on, and reach understandings that look past blame as an explanation.

A wider issue was also raised about some schools and professionals contributing to feelings of

blame; some parents felt that it was insinuated that parenting was causal to certain behaviours.

Working closely with our education colleagues and other professionals to help them to

understand behaviour and family’s experiences will be helpful so that diagnosis does not feel like

the only relief from judgement and blame. Additionally, the finding that parents experienced

some professionals as not sharing their concerns and labelled parents as over-anxious (a finding

also found in other research, e.g. Midence & O’Neill,1999) supports the recommendation made

by the National Autistic Society (NAS, 2003) that a team of skilled practitioners should be

developed with whom education and health professionals working with children can discuss

behaviours that they are concerned about (or that parents bring to them as a concern) along with

the same professionals receiving continuous ASC awareness training. The NAS also argue that

concerns about possible ASC at any age should lead to the triggering of a referral to the local

pathway. Perhaps not supporting children at an early stage means that their problems are further

compounded, which in turn can result in mental health difficulties and much distress for the child

and family.

Moreover, despite the wide range of interventions that could be helpful for families, this

study along with previous research (Wallace, Parr, & Hardy, 2013) has highlighted that this is

lacking after diagnosis. The practice of diagnosing without offering support or treatment raises

43


ethical questions. Parents also reported feeling that they had no choice in their parenting

responses to their daughters. The discourses that frame ASCs as genetic or biological may be

problematic, removing parent’s sense of agency. The way in which autism is talked about in

clinical settings is important; parents need to feel empowered to have agency in making changes

that may be helpful for their daughters, rather than feeling governed by autism. Moreover, if

autism is seen as causal, and therefore an explanation, this may inhibit our curiosity as

professionals about the detail of families’ experiences of distress (e.g. Why is safety only found

at home? What are the child’s experiences of school/separation/showing emotions?). Diagnosing

problems, without offering support might feed the narrative that ‘nothing can be changed’.

This study also highlights the challenges that parents and professionals face due to girls

hiding their distress at school. As professionals, in order to make better decisions diagnostically,

and to reduce feelings of blame, awareness and respect of the different contexts in which

difficulties arise is needed. For girls, reports of ‘no difficulties’ at school should be a ‘flag’ that

needs to be curiously explored.

Suggestions for Further Research

This research has attempted to address the context within which parents make sense of

their daughters’ behaviours before diagnosis of autism. These understandings are held tentatively

and are not transferable to other mothers of daughters with ASC without further research.

Findings from this study suggested that shame may be related to masking for autistic girls. It

would therefore be beneficial to explore further ASC girl’s: experience of shame; assumptions

that ‘difference’ will not be accepted and; perceived fears of showing the ‘real’ self. Perhaps

play-based studies could enable these experiences to be expressed. Parents saw the ‘holding in’

44


of the real self as significant to their daughter’s distress so a better understanding of masking

may help professionals to establish more helpful interventions. Acceptance, Commitment and

Compassion Focussed approaches have been found to be helpful in other contexts for addressing

shame (Gilbert & Irons, 2005; Luoma, Kohlenberg, Hayes & Fletcher, 2012), so further research

into adapted treatments for families is also warranted.

Another area that could be explored further is the experience of blame and judgement for

parents during the process of, and after diagnosis. Interestingly, parents felt ASC diagnosis lifted

these feelings, though also reduced their perceived choice about how they could respond to their

daughters. It would be beneficial to examine how formulation versus diagnosis driven

approaches support families in reducing blame whilst also empowering parents to find helpful

ways of responding to their children.

The findings of this study indicated that mothers of daughters with ASC may make

decisions about what is right partly based on assumptions about gender (i.e. what a girl ‘should’

be like). Presently, diagnostic tools do not have clear guidelines about specific symptoms that are

observed in girls and boys. This study found that mothers noticed their daughter’s ‘difference’

when their daughters do not show gender-typical interests. An exploration of how clinicians

consider typical sex/gender differences, such as gender-specific interests using a qualitative

study would be useful. This might help to inform whether it would be possible to formalise these

considerations in diagnostic measures so as to enhance sensitivity and validity of the measures

for girls.

45


Appraisal of the Study

The current research contributes to the existing literature on the experiences and sense-

making process of parents seeking an autism diagnosis for their daughters. To date, research

considering the perspectives of parents has been limited. The use of a qualitative methodology is

a strength of the study because it enabled detailed and in-depth data to emerge. The narrative

approach allowed for stories to be told without constraint, from those who have an experience of

noticing and making sense of their daughter’s diagnosis of autism. This is valuable in a literature

that largely overlooks the context of autism diagnosis. Using open-ended questions from which

participants could tell their story was a strength in minimising researcher assumptions during the

interview. However, it is accepted that the researcher would have had an impact and that

personal assumptions were inevitable due to the co-creation of the narratives. Therefore, to

support credibility I adhered to Yardley’s (2000) principles by crosschecking transcripts in peer

supervision and with supervisors, and supporting ongoing reflexivity by attending peer-

supervision and keeping a research journal. Despite this, although acceptable, I also recognise

that it is possible to interpret one set of data in many ways (Ricoeur, 1976) and the

interpretations proposed are one, of many different but legitimate understandings of the data.

Participants were recruited mostly on online social media forums. It may be that these

mothers felt less supported because they were seeking support online. Moreover, mothers who

access these forums may identify and engage with autism in a particular way (e.g. perhaps

viewing autism as a larger part of their identity than other parents). This method of recruitment

may not be representative of parents who do not access these sorts of groups. However, it was

observed to be a fair way of accessing the community where 96-99% of adults aged 16-44 years

are on social networking sites (Office for National Statistics, 2018).

46


The research question set out to investigate how parents make sense of their daughter’s

behaviour before diagnosis of ASC. I acknowledge that because I chose to interview parents

whose daughters had already received a diagnosis, this would have coloured the lens through

which their memories are looked at. Additionally, the diagnosis itself might have impacted the

girls’ perceptions and behaviour, and their parents’ stories. All interviews took place within a

year of diagnosis in order to try and minimise this. Also, although it was not an inclusion criteria,

all participants were female. This is likely to have impacted on the findings, though also perhaps

reflects the fact that presently within the UK, women are more likely to take caring responsibility

for their children. It is important that future research examines the views of fathers because there

is evidence that suggest fathers have more difficulties accepting diagnosis than mothers and

employ different coping strategies (Evans, 2010), and feel neglected in the diagnostic process

(Potter, 2017).

Conclusion

This study explored how parents make sense of their daughters’ behaviours before

diagnosis of an ASC and how these experiences were narrated. In addressing the research

question, this study proposed a tentative model that outlines a process of sense making. Further

research is now needed to explore these processes to inform the ways in which diagnosis and

support is given for families.

47


References

American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders

(DSM-5®) American Psychiatric Pub. Arlington, VA, US.

Andrews, M., Squire, C., & Tamboukou, M. (2013). Doing narrative research. California: Sage.

Asperger, H. (1944). Die „Autistischen psychopathen” im kindesalter. Archiv Für Psychiatrie

Und Nervenkrankheiten, 117(1), 76-136.

Attwood, T. (2006). The pattern of abilities and development of girls with Asperger’s syndrome.

Asperger’s and Girls, 1-7.

Avdi, E., Griffin, C., & Brough, S. (2000). Parents' constructions of the ‘problem’during

assessment and diagnosis of their child for an autistic spectrum disorder. Journal of Health

Psychology, 5(2), 241-254.

Baghdadli, A., Pascal, C., Grisi, S., & Aussilloux, C. (2003). Risk factors for self‐injurious

behaviours among 222 young children with autistic disorders. Journal of Intellectual

Disability Research, 47(8), 622-627.

Baird, G., Douglas, H. R., & Murphy, M. S. (2011). Recognising and diagnosing autism in

children and young people: Summary of NICE guidance. Bmj, 343(d6360), 10.1136.

Baird, G., Simonoff, E., Pickles, A., Chandler, S., Loucas, T., Meldrum, D., et al. (2006).

Prevalence of disorders of the autism spectrum in a population cohort of children in south

thames: The special needs and autism project (SNAP). The Lancet, 368(9531), 210-215.

48


Baron-Cohen, S., Scott, F. J., Allison, C., Williams, J., Bolton, P., Matthews, F. E., et al. (2009).

Prevalence of autism-spectrum conditions: UK school-based population study. The British

Journal of Psychiatry, 194(6), 500-509.

Bauminger, N., Shulman, C., & Agam, G. (2003). Peer interaction and loneliness in high-

functioning children with autism. Journal of Autism and Developmental Disorders, 33(5),

489-507.

Begeer, S., Mandell, D., Wijnker-Holmes, B., Venderbosch, S., Rem, D., Stekelenburg, F., et al.

(2013). Sex differences in the timing of identification among children and adults with

autism spectrum disorders. Journal of Autism and Developmental Disorders, 43(5), 1151-

1156.

Biklen, D. (2005). Autism and the myth of the person alone. New York, NY: NYU Press.

Brown, H. M. (1991). Shame and relapse issues with the chemically dependent

client. Alcoholism Treatment Quarterly, 8(3), 77-82.

Burr, V. (2003). Social constructionism, (2nd ed.). East Sussex: Routledge.

Chatard, A., Guimond, S., & Selimbegovic, L. (2007). “How good are you in math?” the effect

of gender stereotypes on students’ recollection of their school marks. Journal of

Experimental Social Psychology, 43(6), 1017-1024.

Cridland, E. K., Jones, S. C., Caputi, P., & Magee, C. A. (2014). Being a girl in a boys’ world:

Investigating the experiences of girls with autism spectrum disorders during

adolescence. Journal of Autism and Developmental Disorders, 44(6), 1261-1274.

Crossley, M. (2000). Introducing narrative psychology McGraw-Hill Education (UK).

49


Daley, T. C. (2004). From symptom recognition to diagnosis: Children with autism in urban

india. Social Science & Medicine, 58(7), 1323-1335.

Davis, N. O., & Carter, A. S. (2008). Parenting stress in mothers and fathers of toddlers with

autism spectrum disorders: Associations with child characteristics. Journal of Autism and

Developmental Disorders, 38(7), 1278.

Dean, M., Harwood, R., & Kasari, C. (2017). The art of camouflage: Gender differences in the

social behaviors of girls and boys with autism spectrum disorder. Autism, 21(6), 678-689.

Dean, M., Kasari, C., Shih, W., Frankel, F., Whitney, R., Landa, R., et al. (2014). The peer

relationships of girls with ASD at school: Comparison to boys and girls with and without

ASD. Journal of Child Psychology and Psychiatry, 55(11), 1218-1225.

Ehlers, S., Gillberg, C., & Wing, L. (1999). A screening questionnaire for Asperger syndrome

and other high-functioning autism spectrum disorders in school age children. Journal of

Autism and Developmental Disorders, 29(2), 129-141.

Evans, A. (2010). Parents’ Responses to their Child’s Diagnosis of Autism Spectrum Disorder

(ASD) Doctoral dissertation, University of Southampton.

Faherty, C. (2006). Asperger’s syndrome in women: A different set of challenges. Asperger’s

and Girls, , 9-14.

Farrugia, D. (2009). Exploring stigma: Medical knowledge and the stigmatisation of parents of

children diagnosed with autism spectrum disorder. Sociology of Health & Illness, 31(7),

1011-1027.

50


Filipek, P. A., Accardo, P. J., Baranek, G. T., Cook, E. H., Dawson, G., Gordon, B., et al. (1999).

The screening and diagnosis of autistic spectrum disorders. Journal of Autism and

Developmental Disorders, 29(6), 439-484.

Flanigan, B. J. (1987). Shame. Alcoholism Treatment Quarterly, 4, 190-194.

Fombonne, E. (1999). The epidemiology of autism: A review. Psychological Medicine, 29(4),

769-786.

Fombonne, E. (2002). Epidemiological trends in rates of autism. Molecular Psychiatry, 7(S2),

S4.

Fombonne, E. (2003). Epidemiological surveys of autism and other pervasive developmental

disorders: An update. Journal of Autism and Developmental Disorders, 33(4), 365-382.

Frazier, T. W., Georgiades, S., Bishop, S. L., & Hardan, A. Y. (2014). Behavioral and cognitive

characteristics of females and males with autism in the Simons Simplex Collection. Journal

of the American Academy of Child & Adolescent Psychiatry, 53(3), 340. e3.

Gergen, K. J. (1985). Social constructionist inquiry: Context and implications. The social

construction of the person (pp. 3-18) Springer.

Giarelli, E., Wiggins, L. D., Rice, C. E., Levy, S. E., Kirby, R. S., Pinto-Martin, J., et al. (2010).

Sex differences in the evaluation and diagnosis of autism spectrum disorders among

children. Disability and Health Journal, 3(2), 107-116.

Gilbert, P., & Irons, C. (2005). Focused therapies and compassionate mind training for shame

and self-attacking. Compassion: Conceptualisations, Research and use in Psychotherapy, ,

263-325.

51


Gillberg, C. (1993). Autism and related behaviours. Journal of Intellectual Disability

Research, 37(4), 343-372.

Goin-Kochel, R. P., Mackintosh, V. H., & Myers, B. J. (2006). How many doctors does it take to

make an autism spectrum diagnosis? Autism, 10(5), 439-451.

Grinker, R. R., & Cho, K. (2013). Border children: Interpreting autism spectrum disorder in

south korea. Ethos, 41(1), 46-74.

Hannah, A., & Murachver, T. (1999). Gender and conversational style as predictors of

conversational behavior. Journal of Language and Social Psychology, 18(2), 153-174.

Harper, D. J. (2012). Surveying qualitative research teaching on british clinical psychology

training programmes 1992–2006: A changing relationship? Qualitative Research in

Psychology, 9(1), 5-12.

Hartung, C. M., & Widiger, T. A. (1998). Gender differences in the diagnosis of mental

disorders: Conclusions and controversies of the DSM–IV. Psychological Bulletin, 123(3),

260.

Hiller, R. M., Young, R. L., & Weber, N. (2014). Sex differences in autism spectrum disorder

based on DSM-5 criteria: Evidence from clinician and teacher reporting. Journal of

Abnormal Child Psychology, 42(8), 1381-1393.

Holliday Willey, L. (1999). Pretending to be normal: Living with Asperger’s syndrome. London:

Jessica Kingsley.

52


Holtmann, M., Bölte, S., & Poustka, F. (2007). Autism spectrum disorders: Sex differences in

autistic behaviour domains and coexisting psychopathology. Developmental Medicine &

Child Neurology, 49(5), 361-366.

Huws, J. C., & Jones, R. (2010). ‘They just seem to live their lives in their own little world’: Lay

perceptions of autism. Disability & Society, 25(3), 331-344.

Kanner, L. (1943). Autistic disturbances of affective contact. Nervous Child, 2(3), 217-250.

Kim, Y. S., Leventhal, B. L., Koh, Y., Fombonne, E., Laska, E., Lim, E., et al. (2011).

Prevalence of autism spectrum disorders in a total population sample. American Journal of

Psychiatry, 168(9), 904-912.

Kopp, S., & Gillberg, C. (2011). The autism spectrum screening questionnaire (ASSQ)-revised

extended version (ASSQ-REV): An instrument for better capturing the autism phenotype in

girls? A preliminary study involving 191 clinical cases and community controls. Research

in Developmental Disabilities, 32(6), 2875-2888.

Kseib, N. A. (2018). A review of the differences in the presentation of girls and boys with autism

spectrum conditions without cognitive impairment. Unpublished manuscript, School of

Psychology, University of Surrey, Surrey, UK.

Kumazaki, H., Muramatsu, T., Kosaka, H., Fujisawa, T. X., Iwata, K., Tomoda, A., et al. (2015).

Sex differences in cognitive and symptom profiles in children with high functioning autism

spectrum disorders. Research in Autism Spectrum Disorders, 13, 1-7.

Lord, C., Luyster, R., Gotham, K., & Guthrie, W. (2012). Autism diagnostic observation

Schedule–Toddler module. Los Angeles: Western Psychological Services.

53


Lord, C., Rutter, M., & Le Couteur, A. (1994). Autism diagnostic interview-revised: A revised

version of a diagnostic interview for caregivers of individuals with possible pervasive

developmental disorders. Journal of Autism and Developmental Disorders, 24(5), 659-685.

Luoma, J. B., Kohlenberg, B. S., Hayes, S. C., & Fletcher, L. (2012). Slow and steady wins the

race: A randomized clinical trial of acceptance and commitment therapy targeting shame in

substance use disorders. Journal of Consulting and Clinical Psychology, 80(1), 43.

Mattila, M., Kielinen, M., Linna, S., Jussila, K., Ebeling, H., Bloigu, R., et al. (2011). Autism

spectrum disorders according to DSM-IV-TR and comparison with DSM-5 draft criteria: An

epidemiological study. Journal of the American Academy of Child & Adolescent

Psychiatry, 50(6), 592. e11.

May, T., Cornish, K., & Rinehart, N. (2014). Does gender matter? A one year follow-up of

autistic, attention and anxiety symptoms in high-functioning children with autism spectrum

disorder. Journal of Autism and Developmental Disorders, 44(5), 1077-1086.

May, T., Cornish, K., & Rinehart, N. J. (2016). Gender profiles of behavioral attention in

children with autism spectrum disorder. Journal of Attention Disorders, 20(7), 627-635.

Mazzone, L., & Vitiello, B. (Eds.). (2016). Psychiatric symptoms and comorbidities in autism

spectrum disorder. New York, NY: Springer.

Midence, K., & O’Neill, M. (1999). The experience of parents in the diagnosis of autism: A pilot

study. Autism, 3(3), 273-285.

Miles, M. B., Huberman, A. M., Huberman, M. A., & Huberman, M. (1994a). Qualitative data

analysis: An expanded sourcebook. California: Sage.

54


Miller, S. (2013). Shame in context. New York, NY: Routledge.

Molloy, H., & Vasil, L. (2002). The social construction of Asperger syndrome: The

pathologising of difference? Disability & Society, 17(6), 659-669.

Morgan, A. (2000). What is narrative therapy?. Dulwich Centre Publications Adelaide.

Murray, M. (2003). Narrative psychology. Qualitative Psychology: A Practical Guide to

Research Methods, 111-131.

Nadesan, M. H. (2013). Constructing autism: Unravelling the'truth'and understanding the

social New York, NY: Routledge.

National Autistic Society (2016). What is autism? [online] Autism.org.uk. Retrieved from:

https://www.autism.org.uk/get-involved/media-centre/position-statements/causes.aspx

[Accessed 11 Jul. 2018].

National Collaborating Centre for Mental Health (UK. (2013). Autism: The management and

support of children and young people on the Autism Spectrum. British Psychological

Society. Chicago.

National Institute for Health and Care Excellence. (2011). Autism spectrum disorder in under

19s: recognition, referral and diagnosis (NICE Clinical guideline CG128). Retrieved from

https://www.nice.org.uk/guidance/qs39

Office for National Statistics. (2018, May 18). Statistical Bulletin: Internet users, UK: 2018

Internet use in the UK annual estimates by age, sex, disability and geographical. London:

Office for National Statistics. Retrieved from:

55


https://www.ons.gov.uk/businessindustryandtrade/itandinternetindustry/bulletins/

internetusers/2018 [Accessed 14 Jul. 2018].

Ozonoff, S., Williams, B. J., & Landa, R. (2005). Parental report of the early development of

children with regressive autism: The delays-plus-regression phenotype. Autism, 9(5), 461-

486.

Plummer, K. (2001). The call of life stories in ethnographic research. Handbook of

Ethnography, , 395-406.

Posserud, M., Hysing, M., Helland, W., Gillberg, C., & Lundervold, A. J. (2016). Autism traits:

The importance of “co-morbid” problems for impairment and contact with services. data

from the bergen child study. Research in Developmental Disabilities,

Potter, C. A. (2017). “I received a leaflet and that is all”: Father experiences of a diagnosis of

autism. British Journal of Learning Disabilities, 45(2), 95-105.

Ricoeur, P. (1976). Interpretation theory: Discourse and the surplus of meaning Texas: TCU

press.

Riessman, C. K. (2008). Narrative methods for the human sciences California: Sage.

Riley, T., Hawe, P., & Shiell, A. (2005). Contested ground: How should qualitative evidence

inform the conduct of a community intervention trial? Journal of Health Services Research

& Policy, 10(2), 103-110.

Rivet, T. T., & Matson, J. L. (2011). Review of gender differences in core symptomatology in

autism spectrum disorders. Research in Autism Spectrum Disorders, 5(3), 957-976.

56

https://www.ons.gov.uk/businessindustryandtrade/itandinternetindustry/bulletins/internetusers/2018

https://www.ons.gov.uk/businessindustryandtrade/itandinternetindustry/bulletins/internetusers/2018


Russell, G., & Norwich, B. (2012). Dilemmas, diagnosis and de-stigmatization: Parental

perspectives on the diagnosis of autism spectrum disorders. Clinical Child Psychology and

Psychiatry, 17(2), 229-245.

Rynkiewicz, A., & Łucka, I. (2015). Autism spectrum disorder (ASD) in girls. co-occurring

psychopathology. sex differences in clinical manifestation. Psychiatr.Pol. (31)

Rynkiewicz, A., Schuller, B., Marchi, E., Piana, S., Camurri, A., Lassalle, A., et al. (2016). An

investigation of the ‘female camouflage effect’in autism using a computerized ADOS-2 and

a test of sex/gender differences. Molecular Autism, 7(1), 10.

Schimmenti, A. (2012). Unveiling the hidden self: Developmental trauma and pathological

shame. Psychodynamic Practice, 18(2), 195-211.

Scott, F. J., Baron-Cohen, S., Bolton, P., & Brayne, C. (2002). Brief report prevalence of autism

spectrum conditions in children aged 5-11 years in Cambridgeshire, UK. Autism, 6(3), 231-

237.

Shattuck, P. T., Durkin, M., Maenner, M., Newschaffer, C., Mandell, D. S., Wiggins, L., et al.

(2009). Timing of identification among children with an autism spectrum disorder: Findings

from a population-based surveillance study. Journal of the American Academy of Child &

Adolescent Psychiatry, 48(5), 474-483.

Sicherman, N., Loewenstein, G., Tavassoli, T., & Buxbaum, J. D. (2018). Grandma knows best:

Family structure and age of diagnosis of autism spectrum disorder. Autism, 22(3), 368-376.

57


Solomon, M., Miller, M., Taylor, S. L., Hinshaw, S. P., & Carter, C. S. (2012). Autism

symptoms and internalizing psychopathology in girls and boys with autism spectrum

disorders. Journal of Autism and Developmental Disorders, 42(1), 48-59.

Springer, K. W., Stellman, J. M., & Jordan-Young, R. M. (2012). Beyond a catalogue of

differences: A theoretical frame and good practice guidelines for researching sex/gender in

human health. Social Science & Medicine, 74(11), 1817-1824.

Supekar, K., & Menon, V. (2015). Sex differences in structural organization of motor systems

and their dissociable links with repetitive/restricted behaviors in children with

autism. Molecular Autism, 6(1), 50.

Timimi, S. (2004). Diagnosis of autism: Current epidemic has social context. BMJ: British

Medical Journal, 328(7433), 226.

Timimi, S., Gardner, N., & McCabe, B. (2011). The myth of autism: Medicalising men's and

boys' social and emotional competence Basingstoke, UK: Palgrave Macmillan.

Tracy, S. J. (2010). Qualitative quality: Eight “big-tent” criteria for excellent qualitative

research. Qualitative Inquiry, 16(10), 837-851.

Volkmar, F. R., Szatmari, P., & Sparrow, S. S. (1993). Sex differences in pervasive

developmental disorders. Journal of Autism and Developmental Disorders, 23(4), 579-591.

Wallace, S., Parr, J., & Hardy, A. (2013). One in a hundred: Putting families at the heart of

autism research. Autistica.Http://Autistica.Org.Uk/Document_downloads/Reports/Autistica-

1-100-Report.PDF [Accessed Apr 2015]

58


Wang, S., Deng, H., You, C., Chen, K., Li, J., Tang, C., et al. (2017). Sex differences in

diagnosis and clinical phenotypes of Chinese children with autism spectrum

disorder. Neuroscience Bulletin, 33(2), 153-160.

Willig, C. (2012). Qualitative interpretation and analysis in psychology McGraw-Hill Education

(UK).

World Health Organization (2015) What do we mean by ‘sex’ and ‘gender’? World Health

Organization. http://www.who.int/gender/whatisgender/en/.

Yardley, L. (2000). Dilemmas in qualitative health research. Psychology and Health, 15(2), 215-

228.

Yaull-Smith, D. (2008). Girls on the spectrum. Communication. London: National Autistic

Society.

59


Major Research Project Empirical Paper: Appendices

Appendix A: Guidelines for Authors: Journal of Autism and Developmental Disorders 61

Appendix B: Online Post for Internet Forums and Study Poster 79

Appendix C: Details of Recruitment Process 81

Appendix D: Participant Information Sheet 82

Appendix E: Consent Form 85

Appendix F: Interview Schedule 87

Appendix G: Criteria for Good Quality Qualitative Research 88

Appendix H: Evidence of Ethical Approval 90

Appendix I: Risk Assessment 91

Appendix J: Extended Analysis (How Were Stories Told? Genre) 95

Appendix K: Extended Analysis (How Were Stories Told? Imagery) 99

Appendix L: Extended Analysis (How is Autism Made Sense of? ‘After Diagnosis’) 101

Appendix M: Examples of Coded Transcript 106

Appendix N: Extracts from Reflective Journal 111

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Appendix A: Guidelines for Authors: Journal of Autism and Developmental Disorders

EDITORIAL PROCEDURE

Double-Blind Peer Review

MANUSCRIPT FORMAT

All JADD manuscripts should be submitted to Editorial Manager in 12-point Times New Roman with standard 1-inch borders around the margins.

APA Style

Text must be double-spaced; APA Publication Manual standards must be followed.

As of January 20, 2011, the Journal has moved to a double-blind review process. Therefore, when submitting a new manuscript, DO NOT include any of your personal information (e.g., name, affiliation) anywhere within the manuscript. When you are ready to submit a manuscript to JADD, please be sure to upload these 3 separate files to the Editorial Manager site to ensure timely processing and review of your paper:

• A title page with the running head, manuscript title, and complete author information. Followed by (page break) the Abstract page with keywords and the corresponding author e-mail information.

• The blinded manuscript containing no author information (no name, no affiliation, and so forth).

• The Author Note

TYPES OF PAPERSArticles, Commentaries Brief Reports, Letters to the Editor← The preferred article length is 20-23 double-spaced manuscript pages long (not

including title page, abstract, tables, figures, addendums, etc.) Manuscripts of 40 double-spaced pages (references, tables and figures counted as pages) have been published. The reviewers or the editor for your review will advise you if a longer submission must be shortened.

← Special Issue Article: The Guest Editor may dictate the article length; maximum pages allowed will be based on the issue’s page allotment.

← Commentary: Approximately 20-25 double-spaced pages maximum, with fewer references and tables/figures than a full-length article.

← A Brief Report: About 8 double-spaced pages with shorter references and fewer tables/figures. May not meet the demands of scientific rigor required of a JADD article – can be preliminary findings.

← A Letter to the Editor is 6 or less double spaced pages with shorter references, tables and figures. Style sheet for Letter to the Editor:

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← A title page with the running head, manuscript title, and complete author information including corresponding author e-mail information

← The blinded manuscript containing no author information (no name, no affiliation, and so forth):-- 6 or less double spaced pages with shorter references, tables and figures - Line 1: “Letter to the Editor” - Line 3: begin title (note: for “Case Reports start with “Case Report: Title”) - Line 6: Text begins; references and tables, figure caption sheet, and figures may follow (page break between each and see format rules)

REVIEW YOUR MANUSCRIPT FOR THESE ELEMENTS1. Order of manuscript pages

Title Page with all Author Contact Information & Abstract with keywords and the corresponding author e-mail information.

Blinded Manuscript without contact information and blinded Abstract, and References

Appendix

Figure Caption Sheet

Figures

Tables

Author Note

MANUSCRIPT SUBMISSION

Manuscript SubmissionSubmission of a manuscript implies: that the work described has not been published before; that it is not under consideration for publication anywhere else; that its publication has been approved by all co-authors, if any, as well as by the responsible authorities – tacitly or explicitly – at the institute where the work has been carried out. The publisher will not be held legally responsible should there be any claims for compensation.

PermissionsAuthors wishing to include figures, tables, or text passages that have already been published elsewhere are required to obtain permission from the copyright owner(s) for both the print and online format and to include evidence that such permission has been granted when submitting their papers. Any material received without such evidence will be assumed to originate from the authors.

Online SubmissionPlease follow the hyperlink “Submit online” on the right and upload all of your manuscript files following the instructions given on the screen.

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TITLE PAGEThe title page should include:

← The name(s) of the author(s)← A concise and informative title← The affiliation(s) and address(es) of the author(s)← The e-mail address, telephone and fax numbers of the corresponding author

ABSTRACTPlease provide an abstract of 120 words or less. The abstract should not contain any undefined abbreviations or unspecified references.

KEYWORDSPlease provide 4 to 6 keywords which can be used for indexing purposes.

TEXT

Text FormattingManuscripts should be submitted in Word.

← Use a normal, plain font (e.g., 10-point Times Roman) for text.← Use italics for emphasis.← Use the automatic page numbering function to number the pages.← Do not use field functions.← Use tab stops or other commands for indents, not the space bar.← Use the table function, not spreadsheets, to make tables.← Use the equation editor or MathType for equations.← Save your file in docx format (Word 2007 or higher) or doc format (older Word

versions).

HeadingsPlease use no more than three levels of displayed headings.

AbbreviationsAbbreviations should be defined at first mention and used consistently thereafter.

FootnotesFootnotes can be used to give additional information, which may include the citation of a reference included in the reference list. They should not consist solely of a reference citation, and they should never include the bibliographic details of a reference. They should also not contain any figures or tables.

Footnotes to the text are numbered consecutively; those to tables should be indicated by superscript lower-case letters (or asterisks for significance values and other statistical data). Footnotes to the title or the authors of the article are not given reference symbols.

Always use footnotes instead of endnotes.

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AcknowledgmentsAcknowledgments of people, grants, funds, etc. should be placed in a separate section on the title page. The names of funding organizations should be written in full.

BODY← The body of the manuscript should begin on a separate page. The manuscript page

header (if used) and page number should appear in the upper right corner. Type the title of the paper centered at the top of the page, add a hard return, and then begin the text using the format noted above. The body should contain:

← Introduction (The introduction has no label.)← Methods (Center the heading. Use un-centered subheadings such as: Participants,

Materials, Procedure.)← Results (Center the heading.)← Discussion (Center the heading)

HEADINGSPlease use no more than three levels of displayed headings.

Level 1: Centered

Level 2: Centered Italicized

Level 3: Flush left, Italicized

FOOTNOTESCenter the label “Footnotes” at the top of a separate page. Footnotes can be used to give additional information, which may include the citation of a reference included in the reference list. They should not consist solely of a reference citation, and they should never include the bibliographic details of a reference. They should also not contain any figures or tables.

Footnotes to the text are numbered consecutively; those to tables should be indicated by superscript lower-case letters (or asterisks for significance values and other statistical data). Footnotes to the title or the authors of the article are not given reference symbols.

Always use footnotes instead of endnotes. Type all content footnotes and copyright permission footnotes together, double-spaced, and numbered consecutively in the order they appear in the article. Indent the first line of each footnote 5-7 spaces. The number of the footnote should correspond to the number in the text. Superscript arabic numerals are used to indicate the text material being footnoted.

AUTHOR NOTEThe first paragraph contains a separate phrase for each author’s name and the affiliations of the authors at the time of the study (include region and country).

The second paragraph identifies any changes in the author affiliation subsequent to the time of

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the study and includes region and country (wording: “authors name is now at affiliation”.)

The third paragraph is Acknowledgments. It identifies grants or other financial support and the source, if appropriate. It is also the place to acknowledge colleagues who assisted in the study and to mention any special circumstances such as the presentation of a version of the paper at a meeting, or its preparation from a doctoral dissertation, or the fact that it is based on an earlier study.

The fourth paragraph states, “Correspondence concerning this article should be addressed to…” and includes the full address, telephone number and email address of the corresponding author.

TERMINOLOGY← Please always use internationally accepted signs and symbols for units (SI units).←SCIENTIFIC STYLE← Generic names of drugs and pesticides are preferred; if trade names are used, the

generic name should be given at first mention.← Please use the standard mathematical notation for formulae, symbols etc.:Italic for

single letters that denote mathematical constants, variables, and unknown quantities Roman/upright for numerals, operators, and punctuation, and commonly defined functions or abbreviations, e.g., cos, det, e or exp, lim, log, max, min, sin, tan, d (for derivative) Bold for vectors, tensors, and matrices.

←REFERENCESCitationCite references in the text by name and year in parentheses. Some examples:

← Negotiation research spans many disciplines (Thompson 1990).← This result was later contradicted by Becker and Seligman (1996).← This effect has been widely studied (Abbott 1991; Barakat et al. 1995; Kelso and

Smith 1998; Medvec et al. 1999).

Reference listThe list of references should only include works that are cited in the text and that have been published or accepted for publication. Personal communications and unpublished works should only be mentioned in the text. Do not use footnotes or endnotes as a substitute for a reference list.

Reference list entries should be alphabetized by the last names of the first author of each work.

← Journal articleHarris, M., Karper, E., Stacks, G., Hoffman, D., DeNiro, R., Cruz, P., et al. (2001). Writing labs and the Hollywood connection. Journal of Film Writing, 44(3), 213–245.

← Article by DOI Slifka, M. K., & Whitton, J. L. (2000) Clinical implications of dysregulated cytokine production. Journal of Molecular Medicine, https://doi.org/10.1007/s001090000086

← BookCalfee, R. C., & Valencia, R. R. (1991). APA guide to preparing

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manuscripts for journal publication. Washington, DC: American Psychological Association.

← Book chapterO’Neil, J. M., & Egan, J. (1992). Men’s and women’s gender role journeys: Metaphor for healing, transition, and transformation. In B. R. Wainrib (Ed.), Gender issues across the life cycle (pp. 107–123). New York: Springer.

← Online documentAbou-Allaban, Y., Dell, M. L., Greenberg, W., Lomax, J., Peteet, J., Torres, M., & Cowell, V. (2006). Religious/spiritual commitments and psychiatric practice. Resource document. American Psychiatric Association. http://www.psych.org/edu/other_res/lib_archives/archives/200604.pdf. Accessed 25 June 2007.

Journal names and book titles should be italicized.

For authors using EndNote, Springer provides an output style that supports the formatting of in-text citations and reference list.← EndNote style (zip, 3 kB)

TABLES← All tables are to be numbered using Arabic numerals.← Tables should always be cited in text in consecutive numerical order. ← For each table, please supply a table caption (title) explaining the components of

the table.← Identify any previously published material by giving the original source in the

form of a reference at the end of the table caption.← Footnotes to tables should be indicated by superscript lower-case letters (or

asterisks for significance values and other statistical data) and included beneath the table body.

Each table should be inserted on a separate page at the back of the manuscript in the order noted above. A call-out for the correct placement of each table should be included in brackets within the text immediately after the phrase in which it is first mentioned. Copyright permission footnotes for tables are typed as a table note.ARTWORK AND ILLUSTRATIONS GUIDELINES

Electronic Figure Submission← Supply all figures electronically.← Indicate what graphics program was used to create the artwork.← For vector graphics, the preferred format is EPS; for halftones, please use TIFF

format. MSOffice files are also acceptable.← Vector graphics containing fonts must have the fonts embedded in the files.← Name your figure files with "Fig" and the figure number, e.g., Fig1.eps.Line Art

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← Definition: Black and white graphic with no shading.← Do not use faint lines and/or lettering and check that all lines and lettering within

the figures are legible at final size.← All lines should be at least 0.1 mm (0.3 pt) wide.← Scanned line drawings and line drawings in bitmap format should have a

minimum resolution of 1200 dpi.← Vector graphics containing fonts must have the fonts embedded in the files.

Halftone Art

← Definition: Photographs, drawings, or paintings with fine shading, etc.← If any magnification is used in the photographs, indicate this by using scale bars

within the figures themselves.← Halftones should have a minimum resolution of 300 dpi.←Combination Art

← Definition: a combination of halftone and line art, e.g., halftones containing line drawing, extensive lettering, color diagrams, etc.

← Combination artwork should have a minimum resolution of 600 dpi.

Color Art← Color art is free of charge for online publication.← If black and white will be shown in the print version, make sure that the main

information will still be visible. Many colors are not distinguishable from one another when converted to black and white. A simple way to check this is to make a xerographic copy to see if the necessary distinctions between the different colors are still apparent.

← If the figures will be printed in black and white, do not refer to color in the

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captions.← Color illustrations should be submitted as RGB (8 bits per channel).

Figure Lettering← To add lettering, it is best to use Helvetica or Arial (sans serif fonts).← Keep lettering consistently sized throughout your final-sized artwork, usually

about 2–3 mm (8–12 pt).← Variance of type size within an illustration should be minimal, e.g., do not use 8-

pt type on an axis and 20-pt type for the axis label.← Avoid effects such as shading, outline letters, etc.← Do not include titles or captions within your illustrations.

Figure Numbering← All figures are to be numbered using Arabic numerals.← Figures should always be cited in text in consecutive numerical order.← Figure parts should be denoted by lowercase letters (a, b, c, etc.).← If an appendix appears in your article and it contains one or more figures,

continue the consecutive numbering of the main text. Do not number the appendix figures,"A1, A2, A3, etc." Figures in online appendices (Electronic Supplementary Material) should, however, be numbered separately.

←Figure Captions← Each figure should have a concise caption describing accurately what the figure

depicts. Include the captions in the text file of the manuscript, not in the figure file.← Figure captions begin with the term Fig. in bold type, followed by the figure

number, also in bold type.← No punctuation is to be included after the number, nor is any punctuation to be

placed at the end of the caption.← Identify all elements found in the figure in the figure caption; and use boxes,

circles, etc., as coordinate points in graphs.← Identify previously published material by giving the original source in the form of

a reference citation at the end of the figure caption.←Figure Placement and Size← Figures should be submitted separately from the text, if possible.← When preparing your figures, size figures to fit in the column width.← For most journals the figures should be 39 mm, 84 mm, 129 mm, or 174 mm wide

and not higher than 234 mm.← For books and book-sized journals, the figures should be 80 mm or 122 mm wide

and not higher than 198 mm.←PermissionsIf you include figures that have already been published elsewhere, you must obtain permission from the copyright owner(s) for both the print and online format. Please be aware that some publishers do not grant electronic rights for free and that Springer will not be able to refund any costs that may have occurred to receive these permissions. In such cases, material from other

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sources should be used.

AccessibilityIn order to give people of all abilities and disabilities access to the content of your figures, please make sure that

← All figures have descriptive captions (blind users could then use a text-to-speech software or a text-to-Braille hardware)

← Patterns are used instead of or in addition to colors for conveying information (colorblind users would then be able to distinguish the visual elements)

← Any figure lettering has a contrast ratio of at least 4.5:1

FIGURE CAPTION SHEETThe figure caption sheet contains a list of only the captions for all figures used. Center the label "Figure Captions" in uppercase and lowercase letters at the top of the page. Begin each caption entry flush left, and type the word "Figure", followed by the appropriate number and a period, all in italics. In the text of the caption (not italicized), capitalize only the first word and any proper nouns. If the caption is more than one line, double-space between the lines, and type the second and subsequent lines flush left. Table notes: Copyright permission footnotes for figures are typed as part of the figure caption.← Each figure should appear on a separate page. The page where the figure is found

should have the figure number and the word "top"[ie, Figure 1 top] typed above the figure. Figures or illustrations (photographs, drawings, diagrams, and charts) are to be numbered in one consecutive series of arabic numerals. Figures may be embedded in the text of a Word or Wordperfect document. Electronic artwork submitted on disk may be in the TIFF, EPS or Powerpoint format (best is 1200 dpi for line and 300 dpi for half-tones and gray-scale art). Color art should be in the CYMK color space. Assistance will be provided by the system administrator if you do not have electronic files for figures; originals of artwork may be sent to the system administrator to be uploaded. *** After first mention in the body of the manuscript, a call-out for the correct placement of each figure should be included in brackets on a separate line within the text.

ELECTRONIC SUPPLEMENTARY MATERIALSpringer accepts electronic multimedia files (animations, movies, audio, etc.) and other supplementary files to be published online along with an article or a book chapter. This feature can add dimension to the author's article, as certain information cannot be printed or is more convenient in electronic form.

Before submitting research datasets as electronic supplementary material, authors should read the journal’s Research data policy. We encourage research data to be archived in data repositories wherever possible.

Submission← Supply all supplementary material in standard file formats.← Please include in each file the following information: article title, journal name,

author names; affiliation and e-mail address of the corresponding author.← To accommodate user downloads, please keep in mind that larger-sized files may

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require very long download times and that some users may experience other problems during downloading.

←Audio, Video, and Animations← Aspect ratio: 16:9 or 4:3← Maximum file size: 25 GB← Minimum video duration: 1 sec← Supported file formats: avi, wmv, mp4, mov, m2p, mp2, mpg, mpeg, flv, mxf,

mts, m4v, 3gp←Text and Presentations← Submit your material in PDF format; .doc or .ppt files are not suitable for long-

term viability.← A collection of figures may also be combined in a PDF file.←Spreadsheets← Spreadsheets should be submitted as .csv or .xlsx files (MS Excel).

Specialized Formats← Specialized format such as .pdb (chemical), .wrl (VRML), .nb (Mathematica

notebook), and .tex can also be supplied.

Collecting Multiple Files← It is possible to collect multiple files in a .zip or .gz file.

Numbering← If supplying any supplementary material, the text must make specific mention of

the material as a citation, similar to that of figures and tables.← Refer to the supplementary files as “Online Resource”, e.g., "... as shown in the

animation (Online Resource 3)", “... additional data are given in Online Resource 4”.← Name the files consecutively, e.g. “ESM_3.mpg”, “ESM_4.pdf”.←Captions← For each supplementary material, please supply a concise caption describing the

content of the file.

Processing of supplementary files← Electronic supplementary material will be published as received from the author

without any conversion, editing, or reformatting.←AccessibilityIn order to give people of all abilities and disabilities access to the content of your supplementary files, please make sure that

← The manuscript contains a descriptive caption for each supplementary material← Video files do not contain anything that flashes more than three times per second

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(so that users prone to seizures caused by such effects are not put at risk)

ETHICAL RESPONSIBILITIES OF AUTHORSThis journal is committed to upholding the integrity of the scientific record. As a member of the Committee on Publication Ethics (COPE) the journal will follow the COPE guidelines on how to deal with potential acts of misconduct.

Authors should refrain from misrepresenting research results which could damage the trust in the journal, the professionalism of scientific authorship, and ultimately the entire scientific endeavour. Maintaining integrity of the research and its presentation can be achieved by following the rules of good scientific practice, which include:

← The manuscript has not been submitted to more than one journal for simultaneous consideration.

← The manuscript has not been published previously (partly or in full), unless the new work concerns an expansion of previous work (please provide transparency on the re-use of material to avoid the hint of text-recycling (“self-plagiarism”)).

← A single study is not split up into several parts to increase the quantity of submissions and submitted to various journals or to one journal over time (e.g. “salami-publishing”).

← No data have been fabricated or manipulated (including images) to support your conclusions

← No data, text, or theories by others are presented as if they were the author’s own (“plagiarism”). Proper acknowledgements to other works must be given (this includes material that is closely copied (near verbatim), summarized and/or paraphrased), quotation marks are used for verbatim copying of material, and permissions are secured for material that is copyrighted. Important note: the journal may use software to screen for plagiarism.

← Consent to submit has been received explicitly from all co-authors, as well as from the responsible authorities - tacitly or explicitly - at the institute/organization where the work has been carried out, before the work is submitted.

← Authors whose names appear on the submission have contributed sufficiently to the scientific work and therefore share collective responsibility and accountability for the results.

← Authors are strongly advised to ensure the correct author group, corresponding author, and order of authors at submission. Changes of authorship or in the order of authors are not accepted after acceptance of a manuscript.

← Adding and/or deleting authors and/or changing the order of authors at revision stage may be justifiably warranted. A letter must accompany the revised manuscript to explain the reason for the change(s) and the contribution role(s) of the added and/or deleted author(s). Further documentation may be required to support your request.

← Requests for addition or removal of authors as a result of authorship disputes after acceptance are honored after formal notification by the institute or independent body and/or when there is agreement between all authors.

← Upon request authors should be prepared to send relevant documentation or data in order to verify the validity of the results. This could be in the form of raw data, samples, records, etc. Sensitive information in the form of confidential proprietary data is

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excluded.

If there is a suspicion of misconduct, the journal will carry out an investigation following the COPE guidelines. If, after investigation, the allegation seems to raise valid concerns, the accused author will be contacted and given an opportunity to address the issue. If misconduct has been established beyond reasonable doubt, this may result in the Editor-in-Chief’s implementation of the following measures, including, but not limited to:← If the article is still under consideration, it may be rejected and returned to the

author.← If the article has already been published online, depending on the nature and

severity of the infraction, either an erratum will be placed with the article or in severe cases complete retraction of the article will occur. The reason must be given in the published erratum or retraction note. Please note that retraction means that the paper is maintained on the platform, watermarked "retracted" and explanation for the retraction is provided in a note linked to the watermarked article.

← The author’s institution may be informed.←COMPLIANCE WITH ETHICAL STANDARDS

To ensure objectivity and transparency in research and to ensure that accepted principles of ethical and professional conduct have been followed, authors should include information regarding sources of funding, potential conflicts of interest (financial or non-financial), informed consent if the research involved human participants, and a statement on welfare of animals if the research involved animals.

Authors should include the following statements (if applicable) in a separate section entitled “Compliance with Ethical Standards” when submitting a paper:

← Disclosure of potential conflicts of interest← Research involving Human Participants and/or Animals← Informed consent

Please note that standards could vary slightly per journal dependent on their peer review policies (i.e. single or double blind peer review) as well as per journal subject discipline. Before submitting your article check the instructions following this section carefully.

The corresponding author should be prepared to collect documentation of compliance with ethical standards and send if requested during peer review or after publication.

The Editors reserve the right to reject manuscripts that do not comply with the above-mentioned guidelines. The author will be held responsible for false statements or failure to fulfill the above-mentioned guidelines.

DISCLOSURE OF POTENTIAL CONFLICTS OF INTEREST

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Authors must disclose all relationships or interests that could influence or bias the work. Although an author may not feel there are conflicts, disclosure of relationships and interests affords a more transparent process, leading to an accurate and objective assessment of the work. Awareness of real or perceived conflicts of interests is a perspective to which the readers are entitled and is not meant to imply that a financial relationship with an organization that sponsored the research or compensation for consultancy work is inappropriate. Examples of potential conflicts of interests that are directly or indirectly related to the research may include but are not limited to the following:

← Research grants from funding agencies (please give the research funder and the grant number)

← Honoraria for speaking at symposia← Financial support for attending symposia← Financial support for educational programs← Employment or consultation← Support from a project sponsor← Position on advisory board or board of directors or other type of management

relationships← Multiple affiliations← Financial relationships, for example equity ownership or investment interest← Intellectual property rights (e.g. patents, copyrights and royalties from such

rights)← Holdings of spouse and/or children that may have financial interest in the work

In addition, interests that go beyond financial interests and compensation (non-financial interests) that may be important to readers should be disclosed. These may include but are not limited to personal relationships or competing interests directly or indirectly tied to this research, or professional interests or personal beliefs that may influence your research.

The corresponding author collects the conflict of interest disclosure forms from all authors. In author collaborations where formal agreements for representation allow it, it is sufficient for the corresponding author to sign the disclosure form on behalf of all authors. Examples of forms can be found← here:

The corresponding author will include a summary statement on the title page that is separate from their manuscript, that reflects what is recorded in the potential conflict of interest disclosure form(s).

See below examples of disclosures:

Funding: This study was funded by X (grant number X).

Conflict of Interest: Author A has received research grants from Company A. Author B has received a speaker honorarium from Company X and owns stock in Company Y. Author C is a

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member of committee Z.

If no conflict exists, the authors should state:

Conflict of Interest: The authors declare that they have no conflict of interest.

RESEARCH INVOLVING HUMAN PARTICIPANTS AND/OR ANIMALS

1) Statement of human rightsWhen reporting studies that involve human participants, authors should include a statement that the studies have been approved by the appropriate institutional and/or national research ethics committee and have been performed in accordance with the ethical standards as laid down in the 1964 Declaration of Helsinki and its later amendments or comparable ethical standards.

If doubt exists whether the research was conducted in accordance with the 1964 Helsinki Declaration or comparable standards, the authors must explain the reasons for their approach, and demonstrate that the independent ethics committee or institutional review board explicitly approved the doubtful aspects of the study.

The following statements should be included in the text before the References section:

Ethical approval: “All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.”

For retrospective studies, please add the following sentence:

“For this type of study formal consent is not required.”

2) Statement on the welfare of animalsThe welfare of animals used for research must be respected. When reporting experiments on animals, authors should indicate whether the international, national, and/or institutional guidelines for the care and use of animals have been followed, and that the studies have been approved by a research ethics committee at the institution or practice at which the studies were conducted (where such a committee exists).

For studies with animals, the following statement should be included in the text before the References section:

Ethical approval: “All applicable international, national, and/or institutional guidelines for the care and use of animals were followed.”

If applicable (where such a committee exists): “All procedures performed in studies involving animals were in accordance with the ethical standards of the institution or practice at which the studies were conducted.”

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If articles do not contain studies with human participants or animals by any of the authors, please select one of the following statements:

“This article does not contain any studies with human participants performed by any of the authors.”

“This article does not contain any studies with animals performed by any of the authors.”

“This article does not contain any studies with human participants or animals performed by any of the authors.”

INFORMED CONSENT

All individuals have individual rights that are not to be infringed. Individual participants in studies have, for example, the right to decide what happens to the (identifiable) personal data gathered, to what they have said during a study or an interview, as well as to any photograph that was taken. Hence it is important that all participants gave their informed consent in writing prior to inclusion in the study. Identifying details (names, dates of birth, identity numbers and other information) of the participants that were studied should not be published in written descriptions, photographs, and genetic profiles unless the information is essential for scientific purposes and the participant (or parent or guardian if the participant is incapable) gave written informed consent for publication. Complete anonymity is difficult to achieve in some cases, and informed consent should be obtained if there is any doubt. For example, masking the eye region in photographs of participants is inadequate protection of anonymity. If identifying characteristics are altered to protect anonymity, such as in genetic profiles, authors should provide assurance that alterations do not distort scientific meaning.

The following statement should be included:

Informed consent: “Informed consent was obtained from all individual participants included in the study.”

If identifying information about participants is available in the article, the following statement should be included:

“Additional informed consent was obtained from all individual participants for whom identifying information is included in this article.”

ENGLISH LANGUAGE EDITINGFor editors and reviewers to accurately assess the work presented in your manuscript you need to ensure the English language is of sufficient quality to be understood. If you need help with writing in English you should consider:

← Asking a colleague who is a native English speaker to review your manuscript for clarity.

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← Visiting the English language tutorial which covers the common mistakes when writing in English.

← Using a professional language editing service where editors will improve the English to ensure that your meaning is clear and identify problems that require your review. Two such services are provided by our affiliates Nature Research Editing Service and American Journal Experts. Springer authors are entitled to a 10% discount on their first submission to either of these services, simply follow the links below.

← English language tutorial← Nature Research Editing Service← American Journal Experts

Please note that the use of a language editing service is not a requirement for publication in this journal and does not imply or guarantee that the article will be selected for peer review or accepted.

If your manuscript is accepted it will be checked by our copyeditors for spelling and formal style before publication.

RESEARCH DATA POLICYThe journal encourages authors, where possible and applicable, to deposit data that support the findings of their research in a public repository. Authors and editors who do not have a preferred repository should consult Springer Nature’s list of repositories and research data policy.← List of Repositories← Research Data Policy

General repositories - for all types of research data - such as figshare and Dryad may also be used.

Datasets that are assigned digital object identifiers (DOIs) by a data repository may be cited in the reference list. Data citations should include the minimum information recommended by DataCite: authors, title, publisher (repository name), identifier.← DataCite

Springer Nature provides a research data policy support service for authors and editors, which can be contacted at [email protected] service provides advice on research data policy compliance and on finding research data repositories. It is independent of journal, book and conference proceedings editorial offices and does not advise on specific manuscripts.← Helpdesk

AFTER ACCEPTANCEUpon acceptance of your article you will receive a link to the special Author Query Application at Springer’s web page where you can sign the Copyright Transfer Statement online and indicate whether you wish to order OpenChoice, offprints, or printing of figures in color.

Once the Author Query Application has been completed, your article will be processed and you will receive the proofs.

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Copyright transferAuthors will be asked to transfer copyright of the article to the Publisher (or grant the Publisher exclusive publication and dissemination rights). This will ensure the widest possible protection and dissemination of information under copyright laws.

← Creative Commons Attribution-NonCommercial 4.0 International License

OffprintsOffprints can be ordered by the corresponding author.

Color illustrationsOnline publication of color illustrations is free of charge. For color in the print version, authors will be expected to make a contribution towards the extra costs.

Proof readingThe purpose of the proof is to check for typesetting or conversion errors and the completeness and accuracy of the text, tables and figures. Substantial changes in content, e.g., new results, corrected values, title and authorship, are not allowed without the approval of the Editor.

After online publication, further changes can only be made in the form of an Erratum, which will be hyperlinked to the article.

Online FirstThe article will be published online after receipt of the corrected proofs. This is the official first publication citable with the DOI. After release of the printed version, the paper can also be cited by issue and page numbers.

OPEN CHOICEIn addition to the normal publication process (whereby an article is submitted to the journal and access to that article is granted to customers who have purchased a subscription), Springer provides an alternative publishing option: Springer Open Choice. A Springer Open Choice article receives all the benefits of a regular subscription-based article, but in addition is made available publicly through Springer’s online platform SpringerLink.

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AUTHORS' CONTRIBUTIONSTo give appropriate credit to each author of a paper, the individual contributions of authors to the manuscript should be specified in this section.

An "author" is generally considered to be someone who has made substantive intellectual

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contributions to a published study. To qualify as an author one should 1) have made substantial contributions to conception and design, or acquisition of data, or analysis and interpretation of data; 2) have been involved in drafting the manuscript or revising it critically for important intellectual content; and 3) have given final approval of the version to be published. Each author should have participated sufficiently in the work to take public responsibility for appropriate portions of the content. Acquisition of funding, collection of data, or general supervision of the research group, alone, does not justify authorship.

We suggest the following kind of format (please use initials to refer to each author's contribution): AB conceived of the study, participated in its design and coordination and drafted the manuscript; JY participated in the design and interpretation of the data; MT participated in the design and coordination of the study and performed the measurement; ES participated in the design of the study and performed the statistical analysis; FG conceived of the study, and participated in its design and coordination and helped to draft the manuscript. All authors read and approved the final manuscript.

All contributors who do not meet the criteria for authorship should be listed in an acknowledgements section. Examples of those who might be acknowledged include a person who provided purely technical help, writing assistance, or a department chair who provided only general support.

NOTE: Because the Journal of Autism and Developmental Disorders operates double-blind peer review, the Authors' contributions section should be uploaded as part of the acknowledgment file, and not included in the main manuscript file.

Retrieved from http://www.springer.com/psychology/child+%26+school+psychology/journal/10803?print_view=true&detailsPage=pltci_3161162

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http://www.springer.com/psychology/child+%26+school+psychology/journal/10803?print_view=true&detailsPage=pltci_3161162

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Appendix B: Online Post for Internet Forums and Study Poster

Post for online forums:

I am a trainee clinical psychologist at the University of Surrey looking for parents of girls with an Autistic Spectrum Disorder (ASD) to take part in a study. I’m interested in understanding why it takes longer for girls to receive a diagnosis of ASD than boys, by exploring parent’s thoughts and stories about the ‘lead up’ to their daughter’s first clinic visit.

Please let me know if you are interested in my study by contacting me by email on [email protected]

I have attached a copy of the flyer and would be happy to answer any questions.

This study has been reviewed and received a favourable ethical opinion from the University of Surrey FHMS Ethics Committee.

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mailto:[email protected]


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Appendix C: Details of Recruitment Process

The researcher searched on Facebook for local ASC support groups such as those

affiliated with the National Autistic Society and posted the advert on these support group pages.

The researcher also shared the study on their Facebook profile and encouraged others to share

the post. The post was shared by friends of the researcher and onwards by friends of friends. The

study was also advertised on the National Autistic Society research webpage, however all the

participants who took part in the study said that they found the advert on Facebook. All

participants who took part in the study lived in the United Kingdom.

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/Appendix D: Participant Information Sheet

Participant Information Sheet[November 2017, Version 2]

PROJECT TITLE: How do parents come to understand that their daughter has an autistic spectrum condition?

IntroductionI am a Trainee Clinical Psychologist from the University of Surrey and I am conducting a research study as part of my clinical doctorate qualification. I will describe the study for you so that you can decide if you would like to take part. Please ask as many questions as you need to make sure you understand what is involved.

What is the purpose of the study?There is very little research exploring how parents come to understand that their daughter might have an autistic spectrum condition (sometimes called Autism). We would like to understand when and how they begin to notice that their child may not be like typical children, and how they come to seek advice and have their child assessed.

Why have I been invited to take part in the study?You have been invited to take part in this study because you have a daughter who has a diagnosis of ASD without cognitive impairment (sometimes called learning disability) and I am interested in hearing your personal story in relation to your daughter before her diagnosis. Between five and eight participants will take part in this study.

Do I have to take part?No, you do not have to participate and it is your choice if you want to be involved. If you agree to take part, you can chose not to answer all of the questions in the interview. You are also free to withdraw without giving a reason, either during the interview or at any time after it up until two weeks have passed. At that time I will have already begun to analyse the interview.

What will my involvement require?If you agree to take part, you will take part in an interview with me. This interview will take place at a convenient location for you. If we are unable to meet face to face, it may be possible for us to conduct the interview over Skype, Zoom or FaceTime. You will be asked to sign a consent form before the interview starts. If we are doing the interview online, you will be required to email or mail me this consent form before the interview.

During the interview you will be asked questions which will give you the opportunity to tell your story about how you came to realise that your daughter may not be like typical children and how you came to seek advice and have her assessed, including the very first things that you noticed. The interview could last any length of time, depending on how long you want to talk for. It is imagined that the interview will last about an hour, however it may go on longer than this if you wish.

Page 1 of 3

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Will my taking part in the study be kept confidential?Yes. Your interview (the ‘data’) will be stored securely in accordance with the UK Data Protection Act (1998). This means that all information that is collected including information from the interviews will be kept confidential. Personal identifiable information (such as your name and any other information that make it possible to identify you) will be changed or “anonymised”. The recordings will be stored securely until they have been anonymised. Anonymised transcripts may be included within my final thesis and retained for 10 years in line with university policy.

Information would only be shared in an instance where I believe that you or another person could be at significant risk of harm.

What will happen to information that I provide?The interview will be recorded on a digital audio recorder so that I can transcribe (write down) what you have said and analyse it after the interview. A professional transcriber may be used if you provide consent for this. All names will be changed and identifying information will be removed from these written versions. The professional transcriber will be required to sign a confidentiality agreement to ensure information in the recording remains confidential. Once transcription is completed the professional transcriber will be required to delete their copies of the written transcription and the audio-recording file. The transcriber will be required to act in accordance with Data Protection Act 1998, maintain confidentiality and store data securely and anonymously. Only myself, my supervisors and other researchers supporting the research will have access to the audio-recordings and written interviews after transcription. Your recordings will be copied on to an encrypted hard drive within 24 hours of the interview.

With your consent, to make the most of your participation and support efficient advancements in science, your anonymised interviews could also be used for future research. We cannot tell you at this moment in time what this research will entail or what analyses will be carried out but we can assure you that all appropriate legal, ethical and other approvals will be in place. For practical reasons your consent would not be sought again. Your data will not be used for commercial purposes.

Will I be paid my expenses?You will be reimbursed for reasonable travel expenses you incur to attend the interview. These will be paid on production of a receipt or a reasonable mileage given, and paid at a standard mileage rate.

What are the possible disadvantages or risks of taking part?Conversations about family members may sometimes bring up emotions that may make you upset during the interview. Your welfare is our priority and therefore if you become distressed the interview can be stopped. I will also make sure that you have details of how to access support if you would like these.

What are the possible benefits of taking part?Some people think that the process of telling their story can be therapeutic, so it is possible that the interview could be a helpful experience for you.

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/It is hoped that the research will help us to understand any differences between boys and girls in getting a diagnosis. Early diagnosis and intervention is known to have a positive impact on those diagnosed with ASD and their families.

What happens when the research study stops?The study will be running between July and November 2017 so that lots of people have an opportunity to participate. Once the study stops, all the data will be analysed and written up as part of my doctoral thesis. If you take part, you can ask me to inform you of the results once it’s completed in 2018.

What if there is a problem?If you have any concerns or complaints about the way in which you have been treated during the research you can contact me or my supervisor:

Natalie Kseib (Principle Investigator): [email protected] Kate Gleeson (Supervisor): [email protected] .

School of Psychology AD BuildingUniversity of SurreyGuildfordGU2 7XH

Telephone: 01483689436

Below is a list of organisations that can also provide you with further support:

National Autistic SocietyHelpline for Advice and support Tel: 0808 800 4104Website: http://www.autism.org.uk/

Carers UKAdvice line and local group meetingsTel: 0808 808 7777Website: https://www.carersuk.org

In addition to the organisations listed above, you can contact your GP for further advice and support.

Who has reviewed the project?This research has been looked at by an independent group of people, called an Ethics Committee, to protect your interests. This study has been reviewed by and received a Favourable Ethical Opinion from University of Surrey Faculty of Health and Medical Sciences Ethics Committee.

Thank you for taking the time to read this Information Sheet

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https://www.carersuk.org/

http://www.autism.org.uk/




Appendix E: Consent Form

Consent Form[November 2017, Version 2]

Please initial each box

I have read and understood the Information Sheet provided (Version 2, March 2017). I have been given a full explanation by the investigator of the nature, purpose, location and likely duration of the study, and of what I will be expected to do.

I have been given the opportunity to ask questions on all aspects of the study and have understood the advice and information given as a result.

I agree for my anonymised data (as outlined in the accompanying information sheet) to be used for this study

I give consent to the interview to be audio recorded

I give consent to anonymous verbatim (exactly your words) quotations being used in reports

I understand that all data is held and processed in the strictest confidence and in accordance with the UK Data Protection Act (1998). I understand that confidentiality will only be broken in the event of a significant risk and that this would be discussed with me.

I understand that I am free to withdraw from the study at any time without needing to justify my decision, without prejudice.

/I confirm that I have read and understood the above and freely consent to participating in this study. I have been given adequate time to consider my participation.

/I understand and agree that the recording will be transcribed into a written copy by a professional transcriber and all information will be recorded anonymously. The professional transcriber will be required to sign a non-disclosure agreement to ensure the information in your recording remains confidential. The transcriber will delete all written copies of the transcription and the audio-recording file when transcription is completed.

Optional

//I agree for my anonymised data to be used for future research that will have received all relevant legal, professional and ethical approvals.

Name of participant (BLOCK CAPITALS) .............................................

Signed ...............................................

Date ...............................................

University of Surrey – RIGO v.10 - 14 July 2015

Page 1 of 2When completed: 1 for participant; 1 for researcher site file.

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Name of researcher taking consent ……......................................(BLOCK CAPITALS)

Signed ...........................................

Date ...........................................

University of Surrey – RIGO v.10 - 14 July 2015

Page 2 of 2When completed: 1 for participant; 1 for researcher site file.

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Appendix F: Interview Schedule

Interview Guide

Thank you for agreeing to take part in this interview today. As we have discussed, I am completing this research as part of my Doctorate in Clinical Psychology at the University of Surrey. This interview is being recorded and will be later transcribed; any personal or identifiable information in these transcriptions will be changed. I would like to remind you that you can stop the interview at any point if you don’t wish to continue. If you want to withdraw your interview data, you can contact me within two weeks of the interview and I will destroy the recording and the transcript. If there are any questions that you would prefer not to answer, please say so.

Demographic information:Daughter’s date of birth:Date of autism diagnosis:Others living at home:Other children:

In a moment I will be asking you to tell your journey of coming to recognise your daughter’s behaviour as unusual or requiring attention by professionals. There will also be a series of prompt questions that I may use throughout the interview to guide the process.

Question:I would like you to start by telling me about your personal story of how you came to realise that X may not be like typical children, including the very first things that you noticed and how you came to seek advice and have X assessed. Please feel free to tell your story in whatever way you wish and begin the story when you feel comfortable.

Areas that I will be sensitised to: Comparisons – whether, how and between who are they made? Behaviours – why and when seen as unusual Ideas of concept of Autism Who talked to How things are explained/ made sense of Expectations (especially in relation to gender) Others involved

Prompt questions to elaborate: You mentioned… Can you tell me about that? Your experience of … sounds really interesting, would you mind expanding on that? Could you give me an example? What happened next? Can you tell me about what X is like?

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Appendix G: Criteria for Good Quality Qualitative Research

1. Sensitivity to context: The research question was developed after a review of the

literature, prior to the study commencing. A reflective diary was kept throughout the

process to ensure that context and wider societal narratives were considered in line with

the epistemological position. I used the diary to explore and reflect on my relationship

with the research (including the impact of it on my beliefs about autism), the process of

carrying out the research, and the participants and their stories.

2. Commitment and rigour: A process was followed in relation to data collection and

analysis over a ten-month period in order to fully engage with the data and reflect

between each stage. Time restraints meant that a professional transcriber was used for

three transcripts but I made sure that I listened to these, as well as the two that were

personally transcribed, whilst reading and checking the transcripts several times. This

listening and re-reading of each transcript allowed for an immersion in the data. I took a

methodical stepped approach to the analysis to demonstrate academic rigour. All

transcripts and analysis were reviewed by supervisors and discussed, before being

reanalysed. Furthermore, peer supervision was attended as a space to reflect on the

research.

3. Transparency and coherence: Extracts from transcripts and analysis and the reflective

journal are included in the appendix to enhance transparency by allowing the reader to

discern and identify patterns. Quotes from the interviews are provided to evidence

interpretations. I attended supervision with two experienced qualitative researchers, one

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of whose area of expertise is in autism as well as peer supervision with a group of fellow

Trainee Clinical Psychologists using qualitative methodology. In peer group supervision,

we reflected on the process of using qualitative analysis and explored the impact of our

beliefs and values on the collection and analysis of data. A fellow member of this group

also analysed an extract of a transcript and similarities and differences in our analyses

and interpretations were discussed. Myself and my peer observed similar themes in the

data, with some differences which were understood by the impact of reading the

transcript for the first time versus having conducted and transcribed the interview.

4. Impact and importance: A gap in our current knowledge was identified and the study

aims to contribute a unique understanding of our interpretations of behaviour. It is also

hoped that findings will be disseminated to other professionals in the field through

publication.

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Appendix H: Evidence of Ethical Approval

/

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Appendix I: Risk Assessment

Risk Assessment for Study : What are the processes by which parents and caregivers of females with Autistic Spectrum Disorder (ASD) without cognitive impairment come to understand their child’s behaviours as requiring intervention?Version: 1 Date: 13/03/2017Relevant Local SOPs and local risk assessments (add all relevant SOPs and risk assessments that apply to your study)

1. SOP/risk assessment ref #: 1. Title and Expiry date: dd/mm/yyyy

Consideration Person at Risk

Scale of Risk Existing Protocols/SOPs/risk assessments

Additional Mechanisms (specific

to the study)

State the risk, e.g .lone working, data storage, confidentiality …

Participant and / or Researcher

Low / Medium / High

What is currently in place to mitigate this risk?

Is there anything in addition to the existing protocols that can be done to mitigate this risk?

Lone working. Safety of the researcher when conducting interviews alone in community locations such as the participant’s home.

Researcher Low

University of Surrey Health & Safety policies (lone working). I will share my schedule of appointments and contact addresses with my supervisors. I will also inform someone of my whereabouts before going to an interview and will agree to call that person following the interview to confirm that I am safe. I will also carry my mobile and establish a call in procedure with that person if a situation arises in which I feel unsafe.

Participant becoming distressed during the interview. Conversations about family members could elicit difficult feelings.

Participant LowParticipants will be briefed before taking part in the study and any concerns that the participant has will be discussed. The interview has been designed to be as sensitive as possible and I will be alert to any potential distress during the interview. Participants will be reminded that they can refuse to answer questions and that the interview can be stopped at any time. I will also signpost participants for support (e.g. National Autistic

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Risk Assessment for Study : What are the processes by which parents and caregivers of females with Autistic Spectrum Disorder (ASD) without cognitive impairment come to understand their child’s behaviours as requiring intervention?Version: 1 Date: 13/03/2017Relevant Local SOPs and local risk assessments (add all relevant SOPs and risk assessments that apply to your study)

1. SOP/risk assessment ref #: 1. Title and Expiry date: dd/mm/yyyy

Consideration Person at Risk

Scale of Risk Existing Protocols/SOPs/risk assessments

Additional Mechanisms (specific

to the study)Society, carer groups) if they would like this.

Participant disclosing information which could indicate that harm could come to them or another person.

Participant and or others Low

The participant will be informed of confidentiality and its limits before taking part in the interview. If concerned about this risk during the interview, I would inform the participant of my concern and remind the participant of my duty to share the relevant information. I will be supervised throughout the process and any concerns will be discussed in supervision.

University of Surrey - Ethicsv.6 - December 2016

Please note: If you refer to a policy or a standard operating procedure (SOP) in your risk assessment, you will need to refer to this in your submission (e.g. include SOP reference number). Researchers should ensure that all guidance is removed from the template before submitting a completed risk assessment to the University Ethics Committee.

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Guidance: You will need to demonstrate awareness of all relevant SOPs and risk assessments that apply to your study and include their title, reference numbers and expiry dates. As part of your research proposal you need to assess any significant risks arising out of your proposed research. The scope of your risk assessment needs to consider the risk of harm to yourself or others as well as the risk to the research process e.g. loss of data, breach of confidentiality or loss of University reputation.SOP: A standard operating procedure (SOP) is a set of step-by-step instructions to be followed routinely for the performance of designated operations or activities.Researcher: consideration needs to be given to any significant risks to the researchers own health and wellbeing that could arise from the research project. Such risks could be due to the nature of the project e.g. distress, tiredness etc. Or as a direct result of working with certain types of equipment e.g. risks from machinery, sharps or exposure to hazardous agents such as radiation, noise etc. Having identified these risks, suitable control measures need to be taken to effectively mitigate the risk to an acceptable level in order that the work can proceed without detriment to either the researcher or the participants.Travel: research may involve travel to locations where the risk to individuals is adjudged to be higher than that in the UK. The University offers general health & safety and security advice to travellers in its travel guidance document. The most up to date travel security information from around the world can be obtained from the FCO (Foreign and Commonwealth Office) website. This information should be used to inform your assessment of the risk of travel to your proposed destination. The University uses a booking agent (Key Travel) to arrange flights and accommodation for business travellers, as part of the Key Travel service additional support is available should an emergency situation arise. The University Insurance website contains detailed information relating to insurance cover for business travellers. It is the individual’s responsibility to ensure sufficient insurance cover is in place before departure. The University Occupational Health service at the Robens Centre provides advice on the health risks associated with International travel.Lone working: researchers may be working alone in situations that pose additional risks e.g. conducting interviews in a participant’s home. These risks need to be mitigated with additional measures taken to safeguard the researcher. Such measures may include; sharing your schedule of appointments and contact addresses with a colleague, carrying a mobile phone with programmed speed dial numbers, established call in procedures, escalation process in the event of a failure to call in at an agreed time etc.Vulnerable groups: research can often involve the study of vulnerable groups, in which case the risk assessment would need to identify the protocols used to safeguard the researcher and the study group. Issues such as the consent process for vulnerable individuals, maintaining confidentiality of participants, the style of interview / questioning being used, if enhanced DBS checks are required for the researcher etc. need to be considered as part of the risk assessment. The researcher would also need to demonstrate an understanding of safeguarding in terms of the protocols governing their conduct during the research project.Participants Wellbeing: it is important to identify within the assessment any risks that the research may pose to the participants’ physical or mental wellbeing. As part of our duty of care to participants, it is important to have adequate controls in place to address foreseeable risks arising as a direct result of participation in the research study. Data Protection: the research process should provide adequate control over the integrity of the data gathered during the research project. There are however risks associated with the storage and use of research data that should be considered as part of the risk assessment process. Issues such as the loss or theft of data held


on a mobile storage device, corruption of data files, control of data transfer via open networks (the cloud), sharing data with research collaborators / private businesses and data protection should all be considered as part of the overall assessment.

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Research Samples: research is often supported by the taking and subsequent analysis of samples. These can range from physical samples of material through to biological samples taken from humans or animals. Samples that carry a risk of infection would require additional controls such as vaccinations and the use of Personal Protective Equipment (PPE) to be robustly implemented. Legislative controls e.g. HTA (Human Tissue Act) are in place that tightly control the taking and use of biological samples. Further controls exist to restrict the transportation of materials e.g. transport of dangerous goods legislation (ADR). Import / Export control licence restrictions may also apply to some categories of material being brought into the UK. Failure to adhere to any of these controls would not only jeopardise the research project but may also result in the prosecution of the University.


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Appendix J: Extended Analysis

How Were Stories Told?

Genre

Two broad narratives emerged: one of a ‘Quest’ in overcoming resistance to be

believed (Ella, Emily and Helen) and one of a ‘Guided Journey’ in which the characters were

assisted by professionals (Tessa and Claire).

The ‘Quest’ narrative often included a moment of realisation, where signs come

together to ‘make sense’ as autism:

Emily: ‘I looked at the list and it was like a lightbulb moment where I ticked thirty out

of the forty things it just described her to a tee (sniffs)’

I chose this as a genre because there was a strong sense that once ‘seen’ the meaning

of behaviours could not be separated from the autism:

Emily: ‘Weird quirks become glaringly obvious signs’

The ‘seeing’ was followed by an emotional quest for the ‘truth’ in the form of a formal

diagnosis and to be legitimatised by others. Helen’s story took the listener through a timeline

of significant events, ending triumphantly with the ‘truth’ being found:

Helen: ‘It's really great that she was diagnosed now because she can now go forward

in secondary school with people understanding her true situation’.

Ella’s story was also identified within the ‘Quest’ narrative. There was an undertone

of desperation on her quest, for example in the acceptance of Obsessive Compulsive Disorder

diagnosis for Fiona, in order to obtain support:

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Ella: ‘…because they agreed to see her. I just thought well we’ll go with it’.

In this narrative Ella describes a battle to be held by Child and Adolescent Mental Health

Services:

Ella: ‘I didn’t want her discharged so we had this battle going on’.

And disbelief at the lack of care for her daughter, where professionals were framed as the

obstacles in the quest for support:

Ella: ‘I said “how bad does it have to get before you see her” and of course they

won’t tell you’.

The ‘Guided Journey’ narratives had a lighter tone. Claire and Tessa narrated

humorous scenes, inviting the listener to laugh:

Claire: ‘A teacher once said to her, "Abbie, I've got better things to do than stand here

while you go in the toilet and locking the door." And she says, "Well, just go

do them."’

Tessa: ‘I had watched Super Nanny, I know what I'm doing, I put her back in bed,

don't talk to her, don't make eye contact just put her back in bed and she'll be

fine. And every single thing - we had a baby-gate at the top of the stairs so she

couldn't come down the stairs -- every single thing out of her bedroom came

over the stairs, including her mattress. And she sat with all at the bottom of

the stairs, I was like, "This never happened to the Super Nanny."’

This observational humour perhaps allowed for their daughter’s differences to be expressed,

without blame being assigned to themselves, or their daughters. Claire’s humour was wry. It

mainly centred around other’s advice and judgement about parenting not fitting her own more

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expert knowledge of her daughter:

Claire: [school said] " She needs to find something to do that's not destructive...

“Hmm, we'll try." [laughs]

In this way, perhaps this positioned her in a more powerful ‘knowing’ position than

professionals.

Discussion ~ Constructing a Diagnosis Narrative

By analysing how participants told their stories I considered how tools were used to

convey a message. Participants used a range of genres. All the narratives conveyed the autism

as something which inherently exists within the child. This was especially the case in the

‘Quest’ narratives in which the autism was ‘unveiled’ or searched for.

It may be that the ‘Guided Journey’ stories helped the narrators to externalise blame

and distress and whilst also defining ‘difference’ in their experiences from the norm. In doing

this, the narrator controlled how difficult experiences or painful emotions were presented.

After the interviews with the participants who used this genre, I observed that I felt more

convinced by the inherent ‘existence’ of autism and more empathetic towards the narrators.

Brown (2012) proposed that when we feel empathy from another person, we feel accepted

rather than judged. As well as eliciting acceptance and reducing judgement, perhaps humour

functioned in curtailing the ‘questioning’ parts of the listener. This may have functioned in

helping the narrator to overcome any threat of feeling blamed.

Within the ‘Quest’ narratives, blame was similarly externalised blame from the self to

the ‘door shutting’ professionals who were portrayed as unwilling to help, no matter how

difficult things were. White and Epston (1990) suggest that externalising emotions removes

blame from the individual and makes the emotional aspect of a story less important. Again, it

could be interpreted that minimising emotions associated with a story by externalising blame,

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could make experiences easier to talk about, without feeling judged.

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Appendix K: Extended Analysis

How Were Stories Told?

In addition to the analysis presented in the main paper, imagery was recognised as

narrative tool is presented here as an extended part of the analysis.

Imagery

The creation of visual images was interpreted as a narrative tool because this helped

the listener to visualise the participant’s ideas of ASC. All participants took realist

perspectives on autism. This was reflected in the images evoked by the stories, two of which

dominated: ‘Uncovering the Truth’ and, ‘The Degenerative Illness’.

‘Uncovering the Truth’

Within some narratives, autism was portrayed as a truth and diagnosis was portrayed

as the uncovering of this truth:

Helen: ‘She can now go forward in secondary school with people understanding her

true situation’.

This image reflects a broader narrative relating to a realist perspective, that there is a ‘truth’

out there to be identified.

‘The Degenerative Illness’

Autism was often depicted as an illness that might worsen if not identified:

Helen: ‘So many of the mothers, report really, really, really shocking behaviour and

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shocking distress in their daughters cos they haven't got picked up in time’.

It was also described as having a sudden onset, in the way in which signs and symptoms

showed:

Helen: ‘Right, nine. Maybe nine and a half. And I suddenly was like, "Ah, this is

suddenly happening." And I was like-- I was just like taken aback because it

had never happened before’.

This example could show how the conceptualisation of autism as an ‘illness’ is used as a tool

of persuasion to convince the listener of the ‘reality’ of autism. Helen had come up against

much difficulty in getting a diagnosis. It may be that this context fed into the way in which

Helen tells her story in order to persuade the listener that it was specifically autism causing

these difficulties, and not something else. Similarly, many participants eluded to the autism

being hereditary:

Tessa: ‘I think their dad’s got it’.

Again, this reflects dominant narratives of autism as biological and/or genetic.

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Appendix L: Extended Analysis

How is Autism Made Sense Of? Themes Across Narratives

2. ‘After Diagnosis’

Although this was not specifically part of the research question, parents’ stories about

after diagnosis shed light on how they had felt before diagnosis.

2.1 ‘Release from Responsibility’

For many parents, diagnosis changed their understandings of their daughter’s

behaviours. One theme was that blame about their daughter behaviour was removed, both

from themselves and from their daughter. In this way, the perception of control of behaviour

changed, whereby parent and child were seen as not being able to change certain behaviours.

Moreover, parents talked about not having choice in their parenting practices:

Emily: ‘If you have a different kind of child everything changes and the way you deal

with them is just completely different…all you parenting principles go out of

the window (laughs)…we have to do an awful lot of bribery to get her to do

anything…’

Tessa: ‘So in the end, it kind of had to be a different strategy’

Some parents insinuated that they would have preferred to parent in a different way, and

perhaps that there are ‘right’ ways to parent:

Emily: ‘I would have never have been one to sort of fall in to the trap of bribery’

Claire: ‘I know you shouldn't but I tend to treat her differently now’

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Despite the diagnosis limiting perceptions of choice in the ways to parent, diagnosis helped to

shift blame away from behaviour being caused by a ‘bad parent’, offering relief:

Emily: ‘So to be able to know what it is. Honestly. It’s such a big relief. Yeah explains

everything.’

Similarly, diagnosis helped to shift blame away from the child, and naughtiness was

externalised to the autism, changing the way in which behaviours are viewed. The child was

no longer viewed as ‘naughty’ because they could not control their behaviour:

Emily: ‘It’s very unlikely that Sophie got shouted at much herself because she’s a

good kid I think she got shouted at for being slow and that’s something she

can’t help’

Claire: ‘It is better now we have a diagnosis cos we can say she's not being naughty.

But this is the problem’

Tessa: ‘What she was doing wasn't actually naughty anyway, it was just a reaction I

think’

Ella: ‘She just wouldn’t or actually couldn’t looking back on it’

Some understandings seemed to be limited by the diagnosis whereby behaviours,

emotions, strengths and weaknesses were seen as symptoms of, or caused by autism, rather

than understood in the context of the situation or experiences:

Emily: ‘I think partly the initial being really upset was because the teacher was

shouty and it was noise’

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Ella: [talking about Fiona talking in ‘proper sentences’ at 16 months] ‘it was

probably due to autism’

Perhaps this allowed for extremely distressing experiences that were previously

difficult to make sense of, to be explained:

Emily: ‘She wishes she was dead (sniffs) and it’s not right. Erm we think it might be

autism’.

However, some participants talked about this impacting their daughter’s perception of

themselves and sense of self-efficacy in their achievements:

Ella: ‘She thinks that she is as clever as she is and as good at acting and singing as

she is, because of autism and therefore she feels that she's cheating’.

2.2 ‘Legitimacy and Validation’

Especially where parents had previously felt blamed, diagnosis helped to bring a

sense of legitimacy, validation and credibility. Helen, eluded to safety in the diagnosis, even

though it did not necessarily mean that there was further support, whilst Ella and Emily felt

more believed and supported by their daughter’s schools:

Ella: ‘They (school) obviously believe me cos I've got a diagnosis for her’

Emily: ‘School have been much more supportive since we got the diagnosis’

Some parents’ narratives also eluded to feelings of empowerment in their knowledge about

autism:

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Ella: ‘This school tell me things that even I don’t know about autism’.

There was a sense from Emily that it might feel threatening for this knowledge to be

challenged:

Emily: ‘No matter what anybody says I know she’s autistic’.

These examples of empowerment through diagnosis, highlight how school and healthcare

systems may feed into a need for people to have a diagnosis, by not offering help or listening

without a diagnosis. In their daughter’s receiving a diagnosis, participants came to develop an

understanding of themselves as a ‘good’ and mastered parent empowered by their knowledge

of their child and knowing best about how to parent them.

2.3 ‘Looking Through The Autism Lens’

Many parents’ narratives reconstructed the past with knowledge from the present.

Behaviours that were previously seen as part of their daughter’s personality are now seen as

caused by Autism:

Emily: ‘She always had a very vivid imagination so we just thought you’re just a bit

quirky. You’re just a bit different you know but it’s cute’

Ella: ‘I just put it down to her love of reading, her love of books and didn't really

think any more of it’

Other diagnoses were also overshadowed by the autism:

Claire: ‘I just thought she was just having separation anxiety. But I think maybe that

is the autism now, that then was causing the problems and issues.’

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All parents talked about ‘signs’ of autism becoming obvious looking back:

Emily: ‘There’s loads of other stuff that when we look back we go ow my god how

stupid were we (laughs) well we didn’t know that’s the thing’.

These examples show how after diagnosis, autism was construed as causal to

behaviour and personality encompassing both ‘negative’ and ‘positive’ parts of this. Parents

externalised blame and naughtiness, but also more positive attributes from their child into the

autism. This understanding also seemed to have been absorbed by children; some parents

spoke about their children no longer feeling proud of their strengths or achievements, because

the child saw them as part of the autism and therefore not their ‘doing’ or responsibility. In

this way, it seemed that for some parents, and some children, the diagnosis of ASC overrode

other explanations and narratives of distress, strength and weakness of the individual’s

identity. The diagnosis enabled a reframing, showing how relocating certain ‘traits’ or

behaviours in language shifts understanding.

Appendix M: Examples of Coded Transcripts

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Participant 4: ‘Claire’Descriptive

level

Record playing over and over

Separation anxiety

Impact on parenting- no choice

99. C: Yeah, when-when she used to go nursery when she

was

100.two year old even, on the car journey, she would upset,

101.we'd have to have the Ede record on again and again.

And

102. they said that she had separation anxiety, because at the

103. nursery, they always had to give her a special toy and sit

104. her in a baby chair for many hours, because she just

105. wouldn't come out of it, and at-at the time, I just thought

106. she was just having separation anxiety. But I think maybe

107. that is the autism now, that then was causing the problems

108. and issues.

109. In the end I gave up working away from the house because

110. she was just too difficult to leave, and she still is even

and-and she's 11 in a couple of days. She's still very hard

111. to leave for a short time. Um, so I think- and then at

112.school, they have to lock the - we have to go in through a

different entrance and then lock the door behind her

113. because she would just run out of school. Um, and it

was

114. just seen as being naughty. Like she was just naughty and

115. she was arguing. She never had any awareness of it, of

116. authority. They had a teacher once said to her, "Abbie,

117. I've got better things to do than stand here while you go

Items of interest, comments, images, emerging themes, tone, interpretations

Specific routine – separation anxiety

Autism causal – other explanations not valid

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Would want to run off

Seen as being naughtyarguingawareness of authority

Doesn’t understand expressions

Tricky to understand what people mean with sayings first time

Grandparents struggle – think cheekyWants to please

118. in the toilet and locking the door." Andd she says,

119."Well, just go do them." (laughs)

120.She just speaks and she just speaks the way, and

121. somebody else said she's making a mountain out of a

122. molehill and these things, these expressions, like 'pulling

123. your socks up', she just doesn't get them. We'll explain

124. them to her now, and she-she-she will. She understands

125. what people are saying to her now, but, if somebody uses

126. something new, that new expression, it's very tricky for

127. her to understand what's going on.

128.And then, grandparents struggle with her because they

129. don't get her. They just think she's cheeky, but she's not

130. really. All she wants to do is please you. But sometimes,

131.the way she comes across is as being back-chatting and-

132. 'cause it's got to be right, it's got to be Abbie- if Abbie

133.has a rule, that's the way it is. And if I've said something

134. to one person, that rule should apply across. [Laughs]

135. She's tricky. [Laughs] It is better now we have a

136. diagnosis 'cause we can say she's not being naughty. But

this is the problem.

Naughtiness now seen as autism

Others perceive her as rude?

Wants to please you

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Has to follow rules. Rules need to be fair. No exceptions

Diagnosis saves reputation

ASD the cause of problems

More flexible parenting

Wants to make people happy

When being difficult, get her on your side

Diagnosis useful as an explanation for others - not a ‘naughty child’(or ‘bad parent’?)ASD cause of problems

Participant 3: ‘Tessa’

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109


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Appendix N: Extracts from Reflective Journal

14th November 2017

Having just completed my second interview, I’ve reflected more on the first, and

realised how much more compelled I had felt to ask questions in the first interview. Having

set up both of the interviews in a very similar way, I felt that the first participant wanted more

for me to be more a part of the conversation. I felt more compelled to ask questions, and was

very conscious that I almost felt like I was being pulled into a clinician role, to ‘assess’ rather

than to listen to her story. This could have been perhaps partly due to my own anxiety in

being my first interview and perhaps not leaving as much space for the participant. However,

on reflection I also wonder if it was also something about her relationship with ‘knowledge’:

an assumption that a parent’s experience may not be as valuable as what we know from ‘hard

science’ that meant that she did not feel comfortable as the storyteller, and so looked to me to

take the lead, because I would ‘know’ what I am looking for? In line with this ‘Ella’ (the first

participant) drew much more ‘information’ from a checklist, almost scaffolding her

knowledge around this. I wonder if this is a reflection of how professionals make parents feel,

and it is assumed that ‘the checklist’ which is more relevant than experience and stories of

individuals. This could have also been used as a tool to persuade the listener of the validity of

the diagnosis and I wonder if this may have been used after many ‘rejections’ from mental

health professionals.

The participant today was fluent in her story, and I felt that I had to do less to

enabling the story to come through. I had time to think about what she was saying and felt

drawn into and convinced by the idea of autism being ‘present’. This surprised me, and I

wonder whether it was something about the way the story was told and the emotion that it

was told with. In some ways it was very comical, but this had a pain and ‘darkness’ to it too. I

also wondered about the fluency of the story and how connected this woman seemed to be

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with an identity of a mother of autistic children. Although this parent spoke with a lot of pain,

it also seemed that this gave her an identity that she seemed very confident with.

9th February 2018

One of the findings that I think is interesting is how parents look back at their

children’s behaviour and ‘see’ things that relate to autism. I have reflected on the parallel

process of my ‘lens’ when looking at the data, that will have been coloured by my personal

experiences and assumptions about what I will find. Now that I am well into my analysis, and

starting to draw out themes I have decided to look back in my journal and see how, what I

think I have found, compares to what I thought I would find around four months ago. One of

my expectations, was that I thought that I would find that ‘signs’ that stand out for parents are

those that do not fit with gender stereotypes for girls e.g. lacking social ability or too much

energy. Mostly however I have found that parents are saying these things did not stand out,

but that only looking back that they can ‘see’ that things weren’t quite right. Another of my

expectations was that parents might feel blamed or stigmatised for their child’s differences

and I wondered whether I would find that diagnosis offers a relief from this. This is

something that I think that I have found in the data. In sharing this with my supervisors, I am

now going to look back over the data and see whether blame and relief from blame is

explicitly or implicitly mentioned. Where it is implicitly mentioned I will think about why I

have interpreted it in this way. I have also decided that I will use quotes for every point in my

results section to be sure that my interpretations are grounded in the data.

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Part 2Major Research Project Literature Review

A Review of the Differences in the Presentation of Girls and Boys with Autism Spectrum Conditions Without Cognitive Impairment

Word Count: 7997

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Statement of Journal Choice

This literature review is written with the view of submitting to a peer-reviewed journal. The

journal of choice for this review is The Journal of Autism and Developmental Disorders. This

journal has an impact factor of 3.3 and is published monthly. It accepts manuscripts on all

aspects of autism spectrum disorders and related developmental disabilities including

diagnosis advancements and also publishes literature reviews making it an appropriate

journal choice.

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Abstract

Estimates from epidemiological research show that Autism Spectrum Conditions (ASCs) are

diagnosed more commonly in males than females. The extent of this disparity is higher

amongst individuals who do not have cognitive impairment. There have also been claims that

girls may be misdiagnosed or underdiagnosed due to a difference in expression or

manifestation of symptoms. The DSM-V (American Psychiatric Association, 2013)

recognises this but does not state what these sex/gender differences look like. This paper

reviews the literature on sex/gender differences in the presentation of children and

adolescents with ASC without cognitive impairment. A systematic search strategy was

conducted which led to 36 papers being identified for the review. Many different aspects of

Autism were reported on and results showed a complex picture with inconsistent findings.

The majority of research has focussed on comparing symptoms on established diagnostic

profiles of ASC and found few differences in broad Social Communication criteria and some

suggestion that girls show less severe Restricted and Repetitive Behaviours and Interests. In

experimental paradigms, females showed better skill in communication, whilst no differences

were found in motor skill, or general adaptive functioning. Typically, females had more

difficulty with symptoms of depression, anxiety and sensory sensitivity, and fewer symptoms

of hyperactivity. However, few studies measured the quality of impairments as opposed to

the severity of impairments. A recommendation is made for qualitative research that

contextualises the existing predominantly quantitative evidence in order to enrich our

understanding of personal experience in perceiving signs of autism, and inform diagnosis.

Key Words: Autism, Females, Gender, Girls, High Functioning

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Introduction

There have been many suggestions that people with Autism present with different

symptoms according to their sex/gender4 (Gould & Ashton-Smith, 2011). As there is no clear

picture of how, or even if, males and females present differently, this review will evaluate the

empirical research that has investigated these differences.

Defining Autism Spectrum Disorders

First described by Kanner (1943) in his essay “Autistic disturbances of affective

content”, Autism is currently most widely understood as a neurodevelopmental disorder

involving impaired social communication alongside restricted or repetitive patterns of

behaviour or interest (American Psychiatric Association, 2013). The term “Autism Spectrum

Disorder” or “ASD” (Wing, 1988) is now generally used to represent individuals with

Autistic Disorder, Asperger's Syndrome and Pervasive Developmental Disorder-Not

Otherwise Specified (PDD-NOS). Prevalence studies indicate that ASD is diagnosed in

approximately 1.1% of the UK population (Baird, Simonoff, Pickles, Chandler, Loucas et al.,

2006; Brugha, McManus, Meltzer, Smith, Scott et al., 2009).

In 2013 the DSM-V (APA, 2013) revised the way in which ASD is diagnosed.

Previously ASD was a collective term for a group of Pervasive Developmental Disorders

characterised by deficits and impairment in three areas of development: reciprocal social

interaction, communication, and the presence of stereotyped or restricted behaviours,

interests, and activities (APA, 2000). Distinct diagnoses of Autistic Disorder, Asperger’s

Syndrome and PDD-NOS would have been given according to specific presentation and

need. Now, clinicians provide a single label of ASD and distinctions of individual need are

4 In this paper “sex” refers to “the biological and physiological characteristics that define men and women” whilst “gender” refers to “the socially constructed roles, behaviours, activities, and attributes that a given society considers appropriate for men and women.” (definitions adopted from the World Health Organization, 2015). However, because gendered socialization begins at birth, it is difficult to separate the effect of sex and gender. For this reason, unless “sex” or “gender” is specifically used as defined above, the term “sex/gender” will be used to acknowledge the inevitable overlap between them (Springer, Mager Stellman & Jordan-Young, 2012).

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specified by three severity levels of the two broad criteria: impairment in social

communication and interaction as well as restricted and repetitive patterns of behaviour and

interests (RRBI; APA, 2013). In order to avoid implying a ‘disordered’ person (Baron-

Cohen, Scott, Allison, Williams, Bolton et al., 2009) and to encourage less stigmatising

terminology I will use the term Autism Spectrum Condition (ASC) or autism5 throughout this

paper.

ASCs are diagnosed behaviourally where a collection of behavioural symptoms is

assumed to signify the presence of an underlying impairment (Rutter, 1978). Currently,

diagnosis relies on observations of behaviour according to signs and symptoms that vary with

age (APA, 2013). The instruments used in best practice in diagnosis include a standardised

clinical interview (Autism Diagnostic Interview-Revised, ADI-R; Lord, Rutter & Le Couteur,

1994) and an observation of set activities (Autism Diagnostic Observation Schedule, ADOS;

Lord, Rutter, Goode, Heemsbergen, Jordan et al., 1989). These instruments rely on subjective

observations or experiences of parents, caregivers, or self and clinician observation and

assessment. The ASC phenotype is thought to also encompass a range of associated features

in the cognitive, behavioural, emotional, motor and sensory domains.

Sex/Gender Disparity in Prevalence Studies

Estimates from epidemiological research show that ASCs are diagnosed more

commonly in males than females though the extent of this sex/gender difference is variable.

Some studies have suggested a male:female ratio of around 4:1 when people of all levels of

intellectual functioning are included (Fombonne, 2003, 2005). This ratio declines to around

2:1 in studies researching individuals with lower intellectual functioning (Fombonne 2003,

2005, 2009). The sex/gender disparity is much higher for individuals without co-occurring

Intellectual Disability (ID) ranging from 6:1 to 16:1 (Baird et al., 2006; Fombonne 1999,

5 The term ‘autism’ is used here to refer to the diagnostic label.

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2002, 2003; Scott, Baron-Cohen, Bolton & Brayne, 2002; Volkmar, Volkmar, Szatmari &

Sparrow, 1993).

There is evidence to show that females who are diagnosed with ASC without ID or

cognitive impairment (high functioning ASC; HFASC), are diagnosed significantly later than

males with the same diagnosis (Begeer, Mandell, Wijnker-Holmes, Venderbosch, Rem et al.,

2013; Goin-Kochel, Mackintosh, & Myers, 2006; Shattuck, Durkin, Maenner, Newschaffer,

Mandell et al., 2009). Additionally, some studies suggest that the age of first concern for

HFASC females is significantly later than for HFASC males (Begeer et al., 2013;

Rynkiewicz & Łucka, 2015).

Explanations for the Sex/Gender Disparity

Several hypotheses have been proposed in an attempt to explain these sex/gender

prevalence differences. These can be summarised under two frameworks; the first is that the

disparity exists due to a ‘real’ difference in the prevalence in males and females, i.e. that

autism impacts fewer females than males (Baron-Cohen, 2005; Wing, 1981a); the second is

that autism is expressed differently in females and thus remains ‘undetected’. These dominant

narratives explaining the disparity also reflect the dominant narrative in which autism is

conceptualised as an ontological truth in that it exists as an observable and essential entity in

itself that can be discovered (Timimi, Gardner & McCabe, 2011).

An ‘Essential Difference’

Baron-Cohen’s ‘Extreme Male Brain Hypothesis’ (Baron-Cohen, 2002; Baron-Cohen,

Knickmeyer & Belmonte, 2005) posits that there is an essential difference between the

neurobiology of the male and female brains, and autism is conceptualised as an extreme

‘male’ brain at the cognitive and biological level. This theory proposes that the gender ratio is

biased towards males because a male brain is more likely to become more ‘male-like’ than a

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female brain. The extreme male brain theory of autism was first informally suggested by

Asperger in 1944 who wrote, ‘The autistic personality is an extreme variant of male

intelligence. Even within the normal variation, we find typical sex differences in

intelligence...In the autistic individual, the male pattern is exaggerated to the extreme’

(Asperger, 1944; Frith, 1991, pp.84–85). This theory predicts that women will cognitively

present as more 'male like', and that typical sex differences found in the general population

will not be found in individuals with ASCs. The theory is supported by evidence that there

are limited differences in symptomology between male and female populations with autism

(Van Wijngaarden-Cremers, van Eeten, Groen, Van Deurzen, Oosterling et al., 2014).

Mis- or Under-diagnosis

Some studies have suggested that discrepancies between male and female HFASC

prevalence could be the result of misdiagnosis and/or under-reporting by caregivers and

parents (Giarelli, Wiggins, Rice, Levy, Kirby et al., 2010; Gillberg, 1993; Kim, Leventhal,

Koh, Fombonne, Laska et al., 2011; Mattila, Kielinen, Linna, Jussila, Ebeling et al., 2011). A

large population study investigating symptoms in undiagnosed populations in South Korea

found larger proportions of females in general education settings that met criteria for ASC

than in special educational needs settings, perhaps raising the possibility that girls may be

‘undiagnosed’ or less likely to be referred for evaluation (Kim et al., 2011). Similarly, in a

twin study, researchers found that girls needed to have either more behavioural problems or

ID, or both, to be diagnosed (Dworzynski, Ronald, Bolton & Happé, 2012).

Similarly, some suggest that a difference in expression or manifestation of symptoms

between the sex/genders alongside a dominance of research in males with autism may mean

that the ‘female phenotype’ of ASCs is not widely recognised by parents or professionals.

Additionally, current assessment tools detecting ASC may have low validity for girls

(Dworzynski et al., 2012; Rivet & Matson, 2011). Correspondingly, the DSM-5 (APA 2013)

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states that ‘females without ID may go unrecognised due to subtler manifestation of

symptoms’. However, it does not indicate what these might look like.

Taking a biosocial perspective, Goldman (2013) proposes that children are socialised

according to their gender, impacting symptom expression of autism, and perhaps allowing for

a basic level of social skill that means difficulties are ‘masked’ in girls. Others have similarly

suggested that females ‘camouflage’ their difficulties during social situations (Attwood,

2006) by either hiding socially unacceptable behaviour or ‘unnaturally’ performing behaviour

deemed to be more ‘normal’ or socially acceptable (Holliday-Willey, 1999).

What do we know about Gender and the Diagnostic Features of ASC?

Many studies have reported similar clinical profiles between male and female children

with ASC (Amr, Raddad, El-Mehesh, Mahmoud & El-Gilany, 2011; Andersson, Gillberg &

Miniscalo, 2013; Mayes & Calhoun 2011). A review and meta-analysis of the literature on

sex/gender differences in ASC found no differences in the domain of social behaviour and

communication (Van Wijngaarden-Cremers et al., 2014). The only difference found was that

boys showed more repetitive and stereotyped behaviours after the age of six. However,

evidence that females with ASC are more likely to have ID are important in interpreting these

results. ASC might be identified more in girls with ID in comparison to those without ID,

perhaps due to more obvious symptom expression, or inability to camouflage symptoms

(Wing 1981b). Cognitive ability (Lord, Schopler & Revicki, 1982; Mayes & Calhoun 2011;

Park, Cho, Cho, Kim, Kim et al., 2012; Sipes, Matson, Worley & Kozlowski, 2011; Volkmar

et al., 1993), and age (Carter, Black, Tewani, Connolly, Kadlec et al., 2007; Mayes &

Calhoun 2011; McLennan, Lord, & Schopler, 1993) are most often suggested to be the

greatest mediating factors influencing the symptomatology and sex/gender differences

observed in ASC clinical presentation. More recently, studies have focussed on investigating

sex/gender differences between individuals with high functioning ASC (e.g. Dean, Harwood

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& Kasari, 2017), but these studies have not been reviewed before.

Rationale

Overall, in comparison to males, evidence suggests that females without ID are: taken

for assessment later; take longer to be diagnosed; are more likely to be misdiagnosed, and;

are less likely to receive a diagnosis of ASC despite showing symptoms. Emerging from an

interest in understanding why females are less likely to be diagnosed as early as boys, this

paper aims to review the literature that has explored sex/gender differences in the

presentation of children and adolescents (0-18 years) with HFASC. It is recognised that ASC

symptoms and presentation change with age but it is beyond the scope of the review to

identify these differences in adults too. The review aims to answer the following research

question by systematically searching the literature:

What does the research tell us about sex/gender differences in the presentation of children

and adolescents with HFASC without ID or cognitive impairment?

Method

Database Searching

An initial scoping of the literature was conducted. This revealed that searching for

‘ASD and "gender or sex" differences’ returned too broad an array of results. Results were

narrowed by adding age and cognitive impairment restrictions to the search terms. After some

trial and error, the following finalised key search terms were used to narrow the results, but

not so much that relevant papers were missed; ‘‘"autism spectrum disorder" OR ASD OR

"pervasive development disorder" OR PDD OR Asperger* OR autism OR "autistic spectrum

condition" OR ASC’ AND ‘"gender difference*" OR "sex difference*"’ AND ‘child* OR

adolescent*’ AND ‘"high functioning" OR "average intelligence"’.

Five databases were searched; Web of Science, Embase, PsycINFO, Medline and

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Scopus. The key words were searched for in all fields in Embase and PyscNET, title, subject,

abstract and keywords in Medline, title, abstract and keywords in Scopus and title and topic

in Web of Science. The last search was carried out on the 11 th February 2018 and no limits

were put on the time period of the search.

Inclusion Criteria

All search results were exported into bibliographic software (ProQuest RefWorks)

where duplicate records were removed leaving 346 potentially eligible records. The title and

abstract of these records were inspected based upon the following inclusion criteria:

1. Must allude to ASD and behaviour, symptom or profile of ASD

2. A child or young person (0-18 years) population sample should be used

3. Sample used must not have ID or cognitive impairments

4. Intervention studies not included

5. Opinion papers and book chapters excluded

6. Written in English

If all of the inclusion criteria were not identified in the abstract, papers were included

providing the first inclusion point was met. It was decided to be over-inclusive to enable a

thorough reading to take place.

One-hundred-and-seven articles were found to meet this criteria at screening. The

reference lists of these articles were hand-searched, revealing another four further potential

records. Following this, the 111 articles were accessed in full. Figure 1 shows the reasons for

exclusions at this stage, and the process of searching. Thirty-six papers were included in the

review.

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Quality Assessment

The 36 papers were assessed for quality using the Health Technology Assessment

(HTA) framework (Kmet, Lee & Cook, 2004). This tool was used as a guide to consider

quality, but papers were not excluded based on this. The HTA is endorsed by the National

Institute for Health Research (NIHR) and assesses quantitative and qualitative research. This

was beneficial because the qualitative papers included were not detailed enough to use a

specific qualitative assessment tool.

The HTA framework assesses quality in terms of the extent to which papers minimise

errors and biases and was designed for considering diverse study designs (Kmet et al., 2004).

Each criterion is scored as; 2=met in full, 1=partially met criteria, 0=failed to meet criteria or

not applicable. Maximum scores are 28 for quantitative papers and 20 for qualitative papers.

Each paper was scored and given a percentage quality mark. Some papers were discussed

with supervisors to check consistent use of the tool, but this was not possible for every paper

due to time limitations.

The range of quality was 64%-95%, with an average quality score of 85%. Kmet et al.

(2004) consider 75% to be a ‘conservative’ cut-off and 55% to be a ‘liberal’ cut off.

Therefore, the quality ranges from ‘modest’ to ‘very good’. Thirty-four papers were

considered good quality (above 75%); two papers fell below the conservative cut-off but no

paper fell below the less stringent quality criterion (above 55%). A summary of the findings,

including detail of quality is outlined in Table I.

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Figure 1. Flow chart of search methodology

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Exclusion of duplicate records using bibliographic software N= 152

Potentially eligible records N= 346

Excluded - did not meet screening criteria N= 239

Full text articles assessed and read further to assess for eligibility N= 111

Potentially eligible records identified through database searches N=498

Web of Science N= 166Embase N= 63Scopus N= 74PsycINFO N= 46Medline N= 148The Cochrane Collaboration Register N=1

Exclusions after reading N=75

Reasons:

Book chapters, theses, commentaries, letters (not peer reviewed) N=9

Not a child/adolescent sample N=6

Sex/gender differences not reported N=37

Not only ASD sample N= 2

Sample included individuals with ID N=19

Intervention study N=1

Did not measure cognition or behaviour N=1

Additional potentially relevant records N= 4

Final papers included in the literature review N=36

Quality criteria applied to remaining

articles using Health Technology

Assessment Tool


Table I.

Summary of papers included in the review

Paper Quality Rating6

Country Method, Design and Measure(s) Sample Summary of Relevant Findings

Baron-Cohen, Hoekstra, Knickmeyer & Wheelwright (2006)

The autism-spectrum quotient (AQ)—adolescent version.

19/2286%

UK Quantitative. Cross-sectional design.

Overall ASC symptoms measured using Autism Spectrum Quotient (AQ)

N=152 (aged 9.8–15.4 years)

ASC females, n=14;ASC males, n=38;TD females, n=50;TD males, n=50.

No significant difference in overall scores in ASC symptoms between boys and girls with ASC (p> .09).

Among the controls, boys scored significantly higher than girls (p= .002).

Cridland, Jones, Caputi & Magee (2014)

Being a girl in a boys’ world: investigating the experiences of girls with autism spectrum disorders during adolescence.

17/2085%

Australia Qualitative. Interpretative Phenomenological Analysis.

Five semi-structured interviews with three mother–daughter dyads and two additional mothers.

N=5 (aged 12–17 years)

ASC females, n=3;ASC female’s mothers, n=5.

Girls with ASC experience challenges similar to those experienced by boys during adolescence such as: challenges of transitioning to and coping with high school and; importance of learning personal boundaries in interactions with others. Other issues of particular relevance to adolescent ASC girls such as difficulties socialising with typically developing girls.

6 See Appendix A for main strengths and limitations of each study.

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Dean, Harwood & Kasari, (2017)

The art of camouflage: Gender differences in the social behaviours of girls and boys with autism spectrum disorder.

20/2291%

USA Mixed methods.

Qualitative descriptions of the social behaviour recorded and Playground Observation of Peer Engagement (POPE) used to rate play.

N=96 (aged 6-8 years)


Qualitative and quantitative results showed that girls with ASC stayed in close proximity to peers and wove in and out of activities, which masked their social challenges. Comparatively, the ‘male landscape’ made it easier to detect the social challenges of boys with ASC; TD boys tended to play organized games whilst boys with ASC tended to play alone (boys with ASC spent significantly more time in ‘solitary’ than all other groups).

Dean, Kasari, Shih, Frankel, Whitney, Landa, Lord, Orlich, King & Harwood (2014).

The peer relationships of girls with ASD at school: comparison to boys and girls with and without ASD.

18/2282%

USA Mixed-methods. Cross-sectional design.

Friendships Survey (Cairns & Cairns, 1994) used to measure social acceptance, social preference, social connections, social salience, reciprocal friendship, and rejection.



Quantitative findings: Both TD and ASC children of both genders preferred and primarily socialised with same gender friends. Girls with ASC receive significantly fewer friendship nominations than the typically developing girls (p= .03) whilst boys with ASC were not significantly different from the typically developing boys. With significantly fewer nominations and social relationships, girls and boys with ASC appear more socially similar to each other than their TD peers. Boys with ASC were more overtly socially excluded compared to girls with ASC who were overlooked rather than rejected.

Frazier, Georgiades, Bishop, & Hardan (2014).

Behavioural and cognitive characteristics of females and males with autism in the Simons Simplex Collection.

18/2282%

USA Quantitative. Cross-sectional design (analysis of existing data sets).

ADOS; ADI-R; SRS; RBS; CBCL; Aberrant Behaviour Checklist; Developmental Coordination Questionnaire; Comprehensive Test of Phonological Processing; Peabody Picture Vocabulary Test.

N=2418 subjects (304 females, 2114 males)

ASC females, n=304; ASC males, n= 2114

(Females IQ >80, n=135; Males IQ>80, not reported)

ASC females had significantly lower levels of restricted interests than ASC males, independent of IQ.

ASC females showed greater irritability than ASC males, independent of IQ.

ASC females did not show a verbal/ nonverbal discrepancy, whilst ASC males were more likely to show a discrepancy in favour of non-verbal IQ.

Fulton, Paynter & 18/22 Australia Quantitative. Cross-sectional N= 116 (aged 29-74 No significant differences in overall scores in

126


Trembath (2017).

Gender comparisons in children with ASD entering early intervention.

82% design.

VABS; SCQ; Preschool Language Scale; ADI-R.

months)


adaptive functioning, cognition, or ASC symptoms between boys and girls with ASC.

Goddard, Dritschel, & Howlin (2014)

A preliminary study of gender differences in autobiographical memory in children with an autism spectrum disorder.

20/2291%

UK Mixed methods. Quantitative data including number of memories and references to emotion and Verbal Fluency.

Autobiographical Memory Cueing Task; Recent and Remote Memory Task; Verbal Fluency Tasks; SCQ.

N=48 (aged 8-16 years)ASC females, n= 12; ASC males, n= 12; TD females, n=12; TD males, n=12.

Females scored significantly lower than males (p=.01) on overall SCQ score.

Deficit in specific memory retrieval was more characteristic of ASC males than ASC females. Females in both the TD and ASC groups generated significantly more detailed and emotional memories than males. They also demonstrated significantly superior verbal fluency scores.

Head, McGillivray & Stokes (2014)

Gender differences in emotionality and sociability in children with autism spectrum disorders.

20/2291%

Australia Quantitative. Cross-sectional correlation design.Friendship Questionnaire

N=101 (aged 10-16 years)ASC females, n = 25; ASC males, n = 25; TD females, n = 25; TD males, n = 26.

Females with ASC significantly have more developed social skills than males with ASC (parent-rated). Females also scored significantly higher than males independent of diagnosis.

Hiller, Young & Weber (2014)

Sex differences in autism spectrum disorder based on DSM-5 criteria: evidence from clinician and teacher reporting.

20/2291%

UK Quantitative. Cross-sectional design. Autism Detection in Early Childhood; CARS; ADI-R; ADOS.

N= 138 (mean ages 8-9 years old)ASC females, n = 69; ASC males, n = 69; TD females, n = 25; TD males, n = 26

No significant sex/gender differences found on broad social criteria. Teachers reported significantly fewer concerns for ASC girls than boys regarding their social skill and externalising behaviours (p< .001).

No significant differences found on overall peer relationships (p= .34) and social-emotional reciprocity (p= .99) criteria. However, ASC girls significantly more likely to show ability to integrate non-verbal and verbal behaviours, maintain a reciprocal conversation and initiate, but

127


not maintain friendships. ASC girls appeared to present with a significantly greater ability to engage in reciprocal conversation, use non-verbal language, and share interests and achievements.

ASC girls presented with both significantly fewer and different restricted interests.

128


Holtmann, Bölte & Poustka (2007).

Autism spectrum disorders: Sex differences in autistic behaviour domains and coexisting psychopathology.

19/2286%

Germany Quantitative. Cross-sectional design.

ADI-R; ADOS; CBCL- parent report

N= 46 (aged 5- 20).

ASC females, n= 23; ASC males, n= 23.

No significant differences found between males and females on the core triad of impairment.

Parent reports revealed significantly more symptoms related to psychopathology in females than males particularly: social (p<.01), attention (p<.01) and thought problems(p<.01).

Howe, O’Rourke, Yatchmink, Viscidi, Jones, & Morrow (2015).

Female autism phenotypes investigated at different levels of language and developmental abilities.

20/2291%

USA Quantitative. Cross-sectional design. Analysis of existing data sets (AGRE, AC, ATN & SSC)

ADOS; SRS; CBCL; VABS.

N= 5723 (aged 6-14 years)


Verbally fluent ASC females had similar or better adaptive and social abilities than ASC males. For example, females showed significantly better social skills on the VABS in the AGRE (p= .05) dataset and the AC (p=.005) dataset.

Hurtig, Kuusikko, Mattila, Haapsamo, Ebeling, Jussila,.& Moilanen (2009).

Multi-informant reports of psychiatric symptoms among high-functioning adolescents with Asperger syndrome or autism.

21/2295%

Finland Quantitative. Cross-sectional analysis.

Youth Self-Report (self-report); CBCL (parent report); Teacher Report Form (teacher report)

N=275 (aged 11 – 17 years)

ASC females, n= 11; ASC males, n= 32; TD females, n=132; TD males, n=85

Self- report: Both sex/genders with ASC reported significantly more problems in ‘withdrawal’ and ‘social problems’ than TD girls. ASC girls reported significantly more ‘thought and attention problems’ than TD girls and ASC boys.

Parent report: The same patterns were found.

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Jamison, Bishop, Huerta, & Halladay (2017).

The clinician perspective on sex differences in autism spectrum disorders.

16/2080%

UK Mixed Methods. Online Survey.Respondents asked to consider sex differences across specific DSM-5 ASD criteria and comorbid conditions as well as qualitative information about their experiences of evaluating female children and adults.

106 clinicians who are actively engaged in the assessmentand diagnosis of ASC and related disorders

Clinicians perceived significantly more sex-related differences in restricted and repetitive behaviours (females were less likely to present with ‘restricted and fixated interests’ and fewer differences for social communication features. Significant differences were most commonly observed in school age and adolescence.

Kauschke, van der Beek, & Kamp-Becker (2016).

Narratives of girls and boys with autism spectrum disorders: gender differences in narrative competence and internal state language.

20/2291%

Germany Quantitative. Experimental design. Cross-sectional analysis.

Narrative competence and Internal State Language (ISL) was investigated using narrations elicited by a wordless picture book.

N=33 (aged 8-19).

ASC females, n= 11; ASC males, n= 11; TD females, n=11.

Girls with ASC produced significantly more words for internal states and explained the causes and consequences of internal states significantly more often than boys with ASC. Both boys and girls with ASC fell behind TD girls in production of affective words.

Kim, Rosenthal, Gwaltney, Jarrold, Hatt, McIntyre, Swain, Solomon & Mundy (2015)

A virtual joy-stick study of emotional responses and social motivation in children with autism spectrum disorder.

17/2285%

USA Quantitative. Experimental.

Virtual-reality emotion sensitivity test measure for emotion recognition and interpersonal distance called the virtual-reality emotion sensitivity test.


ASC females, n= 6; ASC males, n= 13; TD females, n=7; TD males, n=16.

No significant effects of participant sex/gender were observed on accuracy of affect recognition or Interpersonal Distance.

There was little evidence of disturbance of affect recognition among children with ASC.

Kopp & Gillberg (2011)

The Autism Spectrum Screening Questionnaire (ASSQ)-Revised

20/2291%

Sweden Quantitative. Validation of measure. Cross-sectional analysis.18 items added to the ASSQ (ASSQ-GIRL).


ASC females, n=27; ASC males, n= 20; TD

Certain ASSQ-GIRL items were much more typical of girls than of boys with ASC ("avoids demands", "very determined", "careless with physical appearance and dress", "interacts mostly with younger children", “has a difference

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Extended Version: an instrument for better capturing the autism phenotype in girls?

females, n=58. voice/speech” and “difficulties completing simple daily activities”). ‘‘Lacks best friends’’ item was significantly more typical of boys than of girls with ASC.

Koyama, Kamio, Inada & Kurita (2009)

Sex Differences in WISC-III profiles of children with high-functioning pervasive developmental disorders.

17/2277%

Japan Quantitative. Cross-sectional design.Japanese version of the WISC.

N= 142

ASC females, n=26 (mean age 8.2 years); ASC males, n= 116 (mean age 9.0 years).

ASC girls scored significantly higher on the Processing Speed Index, Coding and Symbol Search, and significantly lower on Block Design than ASC boys. Both groups showed weakness on Comprehension.

Girls' profiles were relatively even and different from the boys', which were characterized by a peak on Block Design.

Kumazaki, Muramatsu, Kosaka, Fujisawa, Iwata, Tomoda, Tsuchiya & Mimura (2015)

Sex differences in cognitive and symptom profiles in children with high functioning autism spectrum disorders.

17/2277%

Japan Quantitative. Cross-sectional design.WISC (Japanese version); CARS – Tokyo Version.

N= 46 (aged 5–9) ASC females, n=28; ASC males, n= 28.

ASC girls and ASC boys shared similar cognitive profiles on the WISC-III.

ASC boys more ‘abnormal’ in “Object Use”, “Activity Level” and “fear or nervousness” and ASC girls more abnormal in “Taste, Smell, and Touch Response and Use”.

ASC boys generally had more ‘unusual interests’ than ASC girls.

Lohr, Daniels, Wiemken, Williams, Kelley, Kuravackel & Sears (2017)

The screen for child emotional disorders is sensitive but not specific in identifying anxiety in children with HF-ASD.

19/22

86%USA

Quantitative. Cross-sectional correlation design.

Screen for Child Anxiety-Related Emotional Disorders (SCARED); Achenbach System of Empirically Based Assessment; CBCL; Youth Self-Report for subjects > 11 years.


ASC females n= 12; ASC males n= 88

Significant differences in self and parent reports suggest that parents interpret externalizing behaviours as signs of anxiety in children with ASC, whereas youth may describe internalized symptoms as anxiety.

Parents and females with ASC agree more closely in their reports of anxiety.

Girls with ASC may self-report more anxiety than males.

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https://www.ncbi.nlm.nih.gov/pubmed/?term=Daniels%20K%5BAuthor%5D&cauthor=true&cauthor_uid=28824469


May, Cornish & Rinehart (2014)

Does gender matter? A one year follow-up of autistic, attention and anxiety symptoms in high-functioning children with autism spectrum disorder.

21/22

95%

Australia Quantitative. Cross-sectional correlation design

WISC; WASI; SRS (parent rated); CCC; RBQ.

N=100 (aged 7-12)


No significant sex/gender differences in ASC symptoms.

Males were significantly more hyperactive. Females were significantly more socially anxious.

Similar gender profiles were present across two time points (one year follow up).


Gender profiles of behavioural attention in children with autism spectrum disorder.

21/22

95%

Australia Quantitative. Cross-sectional design.

SRS; CCC; RBQ (parent reported).


ASC females, n=32, ASC males, n=32, TD females, n=30; TD males, n=30.

No significant sex/gender differences in social difficulties found in children with ASC.

Significantly more repetitive motor movements (p= .006), communication difficulties, and inattention (p= .041), reported in boys than girls, regardless of whether they had a diagnosis. ASC boys made significantly more (p= .033), ‘inappropriate initiations’ (talking repetitively about things that no one is interested in) and had more ‘unusual interests’ (p= .004), than ASC girls. Younger boys with ASC had significantly more elevated levels of hyperactivity-impulsivity than younger girls with ASC.

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May, Rinehart, Wilding & Cornish (2013)

The role of attention in the academic attainment of children with autism spectrum disorder

21/2295%

Australia Quantitative. Cross-sectional design.

Parent-reported attention symptoms; attention tasks; school mathematics and reading attainment.

N=124 (7–12 years)

ASC females, n=32; ASC males, n=32; TD females, n=30; TD males, n=30

No significant sex/gender differences on the sustained attention or attention switching tasks.

No significant differences in reading and mathematics performance between boys and girls with ASC.

Noterdaeme, Mildenberger, Minow & Amorosa (2002)

Evaluation of neuromotor deficits in children with autism and children with a specific speech and language disorder.

17/2277%

Germany Quantitative. Cross-sectional design.

Standardised neurological examination. Measures of performance time for the domains of fine motor skills, coordination and balance.

N=22 (mean ages 8-9 years old)


No significant differences between boys and girls on any of the five motor domains for the ASC group or the TD groups.

Children with ASC had significantly more motor problems than TD children on: fine motor, oral, coordination, balance and gross motor neurological subsystems.

Oswald, Winter-Messiers, Gibson, Schmidt, Herr, & Solomon (2016)

Sex differences in internalizing problems during adolescence in autism spectrum disorder

20/2291%

USA Quantitative. Cross-sectional design.

Revised Children's Anxiety and Depression Scale (parent rated); Multidimensional Anxiety Scale for Children.


ASC females, n=14; ASC males, n=18; TD females, n=;14 TD males, n= 18

ASC females exhibited significantly greater depressive symptoms than ASC males and TD females particularly during early adolescence.

Parish-Morris, Liberman, Cieri, Herrington, Yerys, Bateman, Donaher, Ferguson, Pandey & Schultz (2017)

Linguistic camouflage in girls with autism spectrum disorder.

20/2291%

USA Experimental. Logistic regression models assessed effects of age, IQ, sex, and ASD symptoms on total ‘um’ total ‘uh’and ‘um to uh’ ratios.

Participant IQ was estimated using the DAS-II; ADI-R; VABS; SCQ; ADOS speech segments transcribed.



TD and ASC girls exhibited significantly higher UM ratios than boys with ASC. Girls in both groups suppressed UH relative to their male peers.

Filled pause differences in boys and girls with ASC were not attributable to increased social pragmatic ability in girls, as girls and boys in had equivalent social communication skills and comparable ASC symptom severity.

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Pathak, Bennett & Shui (2017)

Correlates of adaptive behavior profiles in a large cohort of children with autism: the autism speaks Autism Treatment Network registry data.

17/2277%

USA Quantitative. Cross-sectional design. Analysis of existing data set (ATN registry)

IQ and VABS scores.

N= 2538 (aged 5 to 17 years)

Grouped by IQ: Borderline IQ = 70-85; Average IQ > 85) and age (5-10 and 11-17 years), and gender.

Females with IQ > 85 had significantly higher adaptive and communication scores than males.

Pisula, Pudło, Słowińska, Kawa, Strząska, Banasiak & Wolańczyk (2017).

Behavioral and emotional problems in high-functioning girls and boys with autism spectrum disorders: Parents’ reports and adolescents’ self-reports.

19/2286%

Poland Quantitative. Cross-sectional design. Correlations between parents’ and adolescents’ ratings also measured.

CBCL (parent reported), Youth Self-Report



ASC adolescents presented higher levels of behavioural and emotional problems than TD adolescents, according to both parent and the adolescent self-reports. No significant sex/gender differences were found.

Adolescents with ASC see their problems as less severe compared to their parents, while the reverse is true of TD adolescents.

Ross, Del Bene, Molholm, Frey & Foxe (2015)

Sex differences in multisensory speech processing in both typically developing children and those on the autism spectrum.

19/2286%

USA Quantitative. Experimental. Independent measures design.

Responses on audio-visual integration task.

N= 175 (aged 5-17)

ASC females, n=15; ASC males, n = 58; TD females, n = 47; TD males, n = 55.

Both TD and ASC females were significantly superior in their ability to recognize words under audio-visual listening conditions compared than TD and ASC males.

Development of audio-visual integration is delayed in male relative to female children, both in TD and ASC children.

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Rynkiewicz & Łucka (2015)

Autism spectrum disorder (ASD) in girls. Co-occurring psychopathology. Sex differences in clinical manifestation.

14/2264%

Poland Quantitative. Cross-sectional design.

ADOS (polish version); AQ (parent-reported whilst older adolescents completed self-report version); Australian Scale for Asperger Syndrome; Girls’ Questionnaire for Autism Spectrum Conditions)

N=31 (aged 10 – 20 years)

ASC females n=15; ASC males, n= 16.

Girls communication, both verbal and gestures was significantly better than boys.

Girls presented with significantly more abnormalities in sensory profile. Girls significantly greater risk for developing anxiety, depression, suicidal ideation and psychiatric hospitalisation. Boys significantly greater risk for co-occurring ADHD, OCD and tics.

Rynkiewicz, Schuller, Marchi, Piana, Camurri, Lassalle & Baron-Cohen (2016)

An investigation of the ‘female camouflage effect’ in autism using a computerized ADOS-2 and a test of sex/gender differences.

15/2268%

Poland Quantitative. Experimental independent measures design and cross-sectional survey.

The ‘Faces Test’ and the ‘Eyes Test’.


ASC females, n = 16; ASC males, n = 17.

Females found to use significantly more gestures and more 'vividly' than males. Females made significantly more mistakes on emotion recognition.

Parents of ASC boys rated their current communication skills significantly better than did parents of ASC girls.

Solomon, Miller, Taylor, Hinshaw & Carter (2012)

Autism symptoms and internalizing psychopathology in girls and boys with autism spectrum disorders.

20/2291%


WASI; ADOS; SCQ; SRS; CCC; RBS; The Behaviour Assessment System for Children; Children's Depression Inventory.



ASC symptom profiles were similar in boys and girls with ASC.

Adolescent girls with ASC evidenced significant internalizing symptoms compared to boys with ASC and TD girls.

ASC boys presented with more pronounced (marginally significant) restricted interests, than ASC girls.

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Stern, Gadgil, Blakeley-Smith, Reaven & Hepburn, (2014)

Psychometric properties of the SCARED in youth with autism spectrum disorder.

19/2286%


Structured clinical interview.ADIS; ADOS; SCQ; SCARED.

Children N=83 (aged 7-14 years):ASC females, n=11; ASC males= 72.

Adolescents N= 36 (aged 13-18 years): ASC females, n=11; ASC males= 25.

No significant sex/gender differences in child-reported anxiety symptoms. Parent-reported social anxiety scores were significantly higher for female children than for male children (p=.008).

Supekar & Menon (2015)

Sex differences in structural organization of motor systems and their dissociable links with repetitive/ restricted behaviours in children with autism.

19/2286%

USA Quantitative. Cross-sectional analysis of existing data sets (NDAR and ABIDE)

ADI-R: social, communication and repetitive/restricted behaviours (RRB) domains.


All with ASC diagnosis(i) NDAR dataset: Females, n=128; males, n= 614 (ii)ABIDE dataset: Females, n=25; males, n=25.

No significant sex/gender differences in scores on the social domain (p = .28) or the communication domain (p = .12) of the ADI-R. ASC girls showed less severe RRB as measured by the ADI-R, compared to ASC boys (p<.01). This pattern was shown across both datasets.

Wakabayashi, Baron-Cohen, Uchiyama, Yoshida, Tojo, Kuroda & Wheelwright (2007)

The autism-spectrum quotient (AQ) children’s version in Japan: a cross-cultural comparison.

19/2286%

Japan Quantitative.Cross-sectional analysis.

AQ (Japanese version)

N = 475 (aged 6-15 years)

ASC females, n=30; ASC males, n = 73; TD females, n =184; TD males, n = 188.

No significant sex/gender differences were found in ASC groups on any domain measuring ASC symptoms. The groups of children with HFASC scored significantly higher than controls.

Wang, Deng, You, Chen, Li, Tang, Ceng, Zou, Zou (2017)

Sex differences in diagnosis and clinical phenotypes of Chinese

18/2282%

China Quantitative.Cross-sectional analysis.

ADI-R; ADOS.

N= 597(24-83 months old)

Verbal group:ASC females, n=134; ASC males, n=463.

Girls showed significantly greater socio-emotional reciprocity (use of the body to communicate, offering comfort, quality of expression of social interest, appropriate facial expressions, appropriateness of social response) than boys (p=.049).

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Children with autism spectrum disorder

Girls also showed significantly fewer RRBs than boys (p<.001 on ADI-R, p=.006 on ADOS), and the type of RRBs in girls differ from those in boys. The ADI-R was found to be less sensitive in girls, particularly for assessment in the RRBs domain.

Zarokanellou, Kolaitis, Vlassopoulos & Papanikolaou (2017)

Brief report: A pilot study of the validity and reliability of the Greek version of the Social Communication Questionnaire.

17/2277%

Greece Quantitative.Cross-sectional correlation design.

SCQ (Greek translated)



No significant difference between girls and boys in the ASC group or TD group in overall score on SCQ.

ABIDE Autism Brain Imaging Data ExchangeAC Autism ConsortiumADI-R Autism Diagnostic Interview–RevisedADIS Anxiety Disorders Interview Schedule-Parent VersionADOS Autism Diagnostic Observation ScheduleAGRE Autism Genetics Resource ExchangeASC Autism Spectrum ConditionATN Autism Treatment NetworkAQ Autism QuotientASSQ Autism Spectrum Screening QuestionnaireCARS Childhood Autism Rating ScaleCCC Children's Communication ChecklistCBCL Child Behaviour ChecklistDAS-II Differential Ability Scales-IIDSM-5 Diagnostic and Statistical Manual of Mental Disorders (Fifth Edition)IQ Intelligence quotientNDAR National Database for Autism ResearchRBS Repetitive Behaviours ScaleRBQ Repetitive Behaviour QuestionnaireSCAREDScreen for Child Anxiety-Related Emotional DisordersSCQ Social Communication QuestionnaireSRS Social Responsiveness ScaleSSC Simons Simplex ComplexVABS Vineland Adaptive Behaviour ScaleWASI Wechsler Abbreviated Scale of IntelligenceWISC Wechsler Intelligence Scale for Children

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Results

The included studies used a range of methodological approaches, outcomes and

focussed on varied aspects of ASC presentation. One study used primarily qualitative

methodology (Cridland et al., 2014) whilst three used mixed-methodologies (Dean et al.,

2017; Goddard et al., 2014; Jamison et al., 2017). The remaining 32 studies used quantitative

methodologies, almost all of which employed a cross-sectional design, either collecting

questionnaire measures at a single time point or analysing existing data and comparing

outcomes according to sex/gender. Five studies adopted an experimental design to assess

participants’ abilities on tasks (Kauschke et al., 2016; Kim et al., 2015; Parish-Morris et al.,

2017; Ross et al., 2015; Rynkiewicz et al., 2016).

The results have been organised according to the broad aspect of ASC presentation

examined; Social Communication; RRBIs; Adaption, Emotional and Behavioural

Difficulties; Cognitive and Motor Functions; and Other Traits. Design, sample

characteristics, findings and quality ratings of the studies are summarised in Table I.

Participants

The total number of participants with ASC across the 36 studies was 13,740. Of these

participants, 81.8% (11,238) were male. This means that at 18.2%, women were under-

represented in the samples. The range of ages sampled across the studies covers most of

childhood and adolescence (24 months- to 18 years-old). Most studies were conducted in

Western populations, including Europe (Germany, Greece, Finland, Poland, Sweden and the

UK), USA, and Australia. Three of the studies were conducted in China and Japan.

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Measures

A variety of screening and diagnostic ASC measures, psychological wellbeing and

adaptive functioning measures were used in the studies. The measures most commonly used

in the studies are summarised in Table II.

Table II.

Descriptions of the most commonly used diagnostic measures in the literature

Measure Description

Autism Diagnostic Observation Schedule (ADOS; Lord et al., 1989)

A semi-structured, standardised assessment of communication, social interaction, imaginative play and restricted and repetitive behaviours. Presents various activities that elicit behaviours directly related to diagnosis of ASCs.

The Autism Diagnostic Interview-Revised (ADI-R; Rutter, Le Couteur & Lord, 2003)

A caregiver-report semi-structured interview, covering early development, verbal and non-verbal communication, social development and stereotypic interests and behaviours. Three domain scores (social interaction, communication, and restrictive and repetitive behaviour) can be calculated.

Autism Spectrum Screening Questionnaire (ASSQ; Ehlers, Gillberg & Wing, 1999)

A 27-item parent or teacher-report questionnaire for children or adolescents (6 to 17 years of age). Designed as an initial screen for HFASCs.

The Children's Communication Checklist-2 (CCC; Bishop 2003).

70-item parent-report questionnaire which assesses communication abilities.

Social Communication Questionnaire (SCQ; Rutter et al. 2003).

A 40-item questionnaire version of the ADI-R.

Repetitive Behaviours Scale-Revised (RBS-R; Lam & Aman, 2007)

A 44-item caregiver-report questionnaire that is used to measure the breadth of repetitive behaviour in children and adolescents (aged 6-17 years) with ASCs.

The Repetitive Behaviour Questionnaire-II (RBQ-II; Leekam et al 2007).

Determines the presence of repetitive behaviours in children based on the ICD-10 criteria for autism.

Social Responsiveness Scale (SRS; Constantino 2002, Constantino et al 2003).

A 65-item parent-report questionnaire to assess social awareness, social information processing, reciprocal social communication, social anxiety/avoidance, autistic preoccupations and traits.

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1. Clinical and Diagnostic Features of ASC

The studies reporting on overall differences on diagnostic measures are summarised

first. The studies that reported on separate constructs of diagnostic features are summarised

subsequently.

1.1 Overall Diagnostic Scores

Ten studies reported on overall differences between male and female children

diagnosed with ASC using scores from a variety of diagnostic measures and screening tools

(ADOS, ADI-R, AQ, ASSQ and SCQ). These studies all reported no differences between the

sex/genders on overall ASC scores (Baron-Cohen et al., 2006; Fulton, et al., 2017; Hiller et

al., 2014; Holtmann et al., 2007; Kopp & Gillberg, 2011; May et al., 2014; Parish-Morris et

al., 2017; Solomon et al., 2012; Wakabayashi et al., 2007; Zarokanellou et al., 2017). The

studies reported on children as young as 29 months (Fulton et al., 2017) to 18 years.

Some studies also reported on TD children’s scores on the same measures and found

that TD boys scored significantly higher than TD girls (Baron-Cohen et al., 2006;

Wakabayashi et al., 2007).

1.2 Social Communication

The construct of social communication has many facets including empathy for others,

use of gestures and emotion recognition. Twenty-two of the studies reviewed reported on

these different features, and/or on the overall construct. Overall findings from diagnostic

measures and clinician ratings are summarised first, followed by more particular aspects of

social ability and communication.

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1.2.1 Overall Diagnostic Scores

Ten studies reviewed parent-reported measures of social communication from clinical

samples (Frazier et al., 2014; Head et al., 2014; Holtmann et al 2007; Howe et al., 2015;

Kumazaki et al., 2015; May et al., 2016; May et al., 2014; Parish-Morris et al., 2017;

Rynkiewicz, et al, 2016; Supekar & Menon, 2015). The majority of these studies found no

differences between sex/genders with regard to social ability and communication (Frazier et

al., 2014; Holtmann et al., 2007; Kumazaki et al., 2015; May et al., 2014; Solomon et al.,

2012; Supekar & Menon, 2015). Additionally, May and colleagues (2014) showed that

symptom severity stayed stable after a one year follow-up. Unsurprisingly, ASC groups

showed more social and communication difficulties than typically developing (TD) groups

(Solomon et al., 2012; May et al., 2016). Jamison and colleagues’ (2017) qualitative study

asking clinicians to reflect and comment on their perceptions and experiences of gender

differences in ASCs, also revealed no differences between the sex/genders on social

communication features.

1.2.2 Social Ability - Diagnostic Scores

The majority of studies found no sex/gender differences on overall parent-reported

scores measuring social skill (Hiller et al., 2014; Howe et al., 2015; May et al., 2016; Supekar

& Menon, 2015). However, Wang and colleagues (2017) found that parents rated their ASC

girls as having better social skill than their ASC boys on measures of socio-emotional

reciprocity and social skill. This study’s participants were younger (aged 24-83 months) than

the other studies. This could suggest that before they reach their sixth birthday, ASC girls’

social difficulties are either; not present, or as apparent to parents as the social difficulties

found among ASC boys. Interestingly, Hiller and colleagues found that teachers reported

fewer concerns for girls than boys regarding their social skill, whilst there were no overall

141


sex/gender differences on overall peer relationships and social-emotional reciprocity criteria

on diagnostic measures (Hiller et al., 2014). Perhaps this shows a discrepancy between

teacher’s perceptions of social skill, and those of clinicians and parents (i.e. that teachers

perceive autistic girls as more socially able than autistic boys in comparison to parents, who

might see more difficulty at home). Additionally, the different ratings by teachers and parents

could suggest that in the context of school, autistic girls’ social difficulties are less

perceptible than autistic boys’.

Where no sex/gender differences were found overall, two studies that examined

diagnostic criteria in more detail found more nuanced differences in how they were met

(Hiller et al., 2014; May et al., 2016). Examining existing data, Hiller and colleagues (2014)

found that girls presented with better use of social gestures, whilst their ability to understand

and interpret other people’s nonverbal gestures was not significantly different to boys. This

perhaps suggests an ability to act socially without understanding others’ social behaviour.

Additionally, the type of impairments on the ‘social-emotional reciprocity’ criterion was

different; girls were rated as more able to engage in reciprocal conversation, share interests

and achievements with others, and had better and more ‘normal’ imaginative play than boys.

Friendship difficulties also manifested in different ways; girls were found to be more able to

initiate friendships but had trouble maintaining them due to a need to have control over play.

Girls were also more able to regulate and manage their behaviour in public (e.g. monitoring

volume of voice, avoiding socially inappropriate comments and externalising behaviour).

These observations fit with the findings that teachers perceive girls as more socially able than

autistic boys.

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1.2.3 Communication - Diagnostic Scores

Many aspects of communication were reported on, making findings challenging to

bring together. However, the studies that reported on ‘communication’ generally, either found

no sex/gender differences (Supekar & Menon, 2015) or found that communication difficulties

were more evident for boys, sometimes irrespective of ASC diagnosis (Hiller et al., 2014;

May et al., 2016; Pathak et al., 2017; Rynkiewicz & Łucka, 2015). Again, some differences

were found on more specific aspects of the communication construct, generally showing

more communication skill in girls than boys. For example, boys generally made more

‘inappropriate initiations’, talking repetitively about things that no-one is interested in (May

et al., 2016). Hiller and colleagues (2014) found that the abilities to integrate nonverbal and

verbal gestures and use pragmatic language was significantly predictive of being female.

Only in one study, (Rynkiewicz et al., 2016) were boys rated by their parents as having better

communication skills than girls on the SCQ. This study’s participants were 5-10 years-old

whilst the other studies’ participants were mostly around 10-18 years-old. One reason for this

study’s outlying results could be that girls who have already been diagnosed in this age group

may have had more obvious communication difficulties than girls with more subtle

symptoms that are not diagnosed until later.

1.2.4 Soc ial Communication – Other Measures/ Designs

Generally, experimental studies found that girls with ASC had better expressive and

receptive communication than boys whilst few sex/gender differences were found in studies

that measured emotion recognition and/or social motivation. Studies observing friendship

patterns, reported that the social challenges of girls with ASC look different and are perhaps

less obvious, than those of boys with ASC.

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Receptive and Expressive Communication

Using an “objective computerised technique” to measure gestures during two ADOS-

2 tasks, Rynkiewicz and colleagues (2016) found that ASC girls used gestures more

frequently and more “vividly” than ASC boys. Whilst this study is robust in controlling

report bias, it is not clear whether more vivid use of gestures is indicative of better body

language use in communication (i.e. there was no interpretation of the relevance of the

gestures to the message conveyed, or whether gestures enhanced or hindered

communication). Interpretation of gestures according to context may have proved useful, but

perhaps would come at the cost of introducing observer bias. These findings are similar to

those found by Hiller and colleagues (2014) on teacher-reported measures, that females are

more able in their use of social gestures and ability to integrate nonverbal and verbal gestures.

Kauschke and colleagues (2016) analysed children’s discourses telling a story from a

wordless picture book. They found that ASC girls acknowledged internal states (e.g.

physiological sensations and modality of events) more than ASC boys, though this did not

extend to emotional terms. The evidence about sex/gender differences in the use of internal

state language in neuro-typical children is inconclusive: some studies have found that girls

use a greater proportion of internal state terms than boys (e.g. Hughes and Dunn, 1998) whilst

some have found no differences (e.g. Peterson & Biggs, 2001). Parish-Morris and colleagues

(2017) found that both ASC and TD females use ‘pragmatic language-markers’ such as ‘um’

better than their male peers. They suggest that this may normalize the way ASC girls sound

relative to other children, serving as “linguistic camouflage”.

Investigating children’s abilities to integrate auditory and speech signals, Ross and

colleagues (2015) found that females, both TD and with ASC, performed significantly better

at recognising words than boys.

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Emotion Recognition and Social Motivation

Kim and colleagues (2015) observed no sex/gender differences in ASC or TD groups

on a computerised emotion recognition task. Interestingly, they also found no differences

between ASC and TD groups on affect recognition tasks. However, the study had few

participants, and subtle differences may not have reached significance. Another study using

computerised emotion recognition tests found that ASC girls made significantly more

mistakes than ASC boys (Rynkiewicz et al., 2016) This is surprising given that in TD

populations, a subtle female advantage for facial emotion recognition has been evidenced

(Lawrence, Campbell & Skuse, 2015; Montirosso, Peverelli, Frigerio, Crespi, & Borgatti,

2010).

Using avatars in a video game, Kim and colleagues (2015) also measured children’s

preference for interpersonal closeness/distance or ‘social motivation’ and observed no

sex/gender differences in the ASC or TD groups.

Friendship

In a playground observation of 6 to 8 year-old children, Dean and colleagues (2017)

suggest that social challenges of ASC boys look different, and are more obvious, than those

of ASC girls. ASC girls tended to stay in close proximity to social groups, perhaps masking

social challenges from onlookers whilst TD boys’ play tended to be physically active or

structured making it relatively easy to spot ASC boys, who were often wandering alone apart

from the game. Investigating the perspectives of children using the ‘Friendships Survey’

(Cairns & Cairns, 1994), Dean and colleagues (2014) found that boys with ASC were more

overtly socially excluded, compared to girls with ASC who were ‘overlooked’, i.e. not put

down on their peer’s friend lists.

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Head and colleagues (2014) found that regardless of diagnosis, girls and their parents’

ratings on the Friendship Questionnaire (Baron-Cohen & Wheelwright, 2003) were higher

than boys’, indicating higher levels of sociability, emotionality and friendship. The largest

difference between parent and child reports on social difficulty was found between ASC

females and their parents, perhaps suggesting that parents are less aware of their daughter’s

challenges, compared to parents of ASC boys.

Analysing interviews with mother-daughter dyads about their experiences of ASC,

Cridland and colleagues (2014) found that some challenges were similar to those of boys, for

example, transitioning to and coping with high school and learning about personal

boundaries. Adolescent girls with ASC expressed specific difficulty with socialising with TD

girls. These were difficulties with following conversations because of the length of time

needed to process information, and difficulty fitting in due to disinterest in fashion.

Altogether, these studies suggest that although friendship difficulties exist for both

girls and boys with ASC, these may look different according to a child’s sex/gender and are

perhaps less obviously observable for girls than boys.

1.3 Restricted and Repetitive Behaviours and Interests

Nine studies compared the severity and/or type of RRBIs between girls and boys with

HFASC using parent-reported measures and qualitative methodology (Jamison et al., 2017).

Except for two studies that reported no differences between males and females (Holtmann et

al., 2007; May et al., 2014), ASC females showed significantly fewer RRBIs compared with

ASC males (Frazier et al., 2014; Hiller et al., 2014; May et al., 2016; Solomon et al., 2012;

Supekar & Menon 2015; Wang et al., 2017). In general, studies that had larger sample sizes,

for example those using existing datasets, were more likely to report sex/gender differences

on RRBIs, perhaps suggesting that differences are subtle and require large samples to reach

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significance. Some researchers reported more RRBI symptoms in boys regardless of presence

of ASC diagnosis (e.g. repetitive motor movements; May et al., 2016) whilst others reported

no differences between the sex/genders in TD children (e.g. Solomon et al., 2012).

Four studies reported on various domains of RRBI (Hiller et al., 2014; Jamison et al.,

2017; Rynkiewicz & Łucka, 2015; Solomon et al., 2012). No sex/gender differences were

reported in any of the following domains: stereotyped behaviour, self-injurious behaviour,

compulsive behaviour, ritualistic behaviour, sameness behaviour, routine adherence,

stereotyped movement and preoccupation with parts of objects. However, females were less

likely to present with ‘restricted and fixated interests’ (Jamison et al., 2017; Solomon et al.,

2012) and ‘stereotyped use of objects’ such as lining up or sorting behaviour (Hiller et al.,

2014).

Hiller and colleagues (2014) reported on differences in the type of RRBIs. They found

that girls had more restricted interests in the ‘seemingly random’ category (e.g. rocks,

stickers, pens) whilst boys were more likely to have fixations with screen time, such as

obsessive gaming. Conversely, however, in two studies ASC boys were more likely to be

rated as having ‘unusual interests’ than ASC girls (Kumazaki et al., 2015; May et al., 2016)

though the nature of these interests were not reported on. This highlights an issue around the

subjectivity of what is and is not ‘unusual’ which will be considered further in the discussion.

1.4 Adaption, Emotional and Behavioural Difficulties

Twelve studies reported on various aspects of the emotional and behavioural

tendencies of children with ASC. Some of these commented broadly on emotional and

behavioural problems. These are summarised first, followed by studies that commented on

constructs of depression, anxiety, sensory difficulty, adaption and hyperactivity. Although the

picture was complex, in general, females were reported to have more difficulty with

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symptoms of depression, anxiety and sensory sensitivity, whilst males were more likely to

present with symptoms of hyperactivity. Generally, females were rated by their parents as

having similar adaptive daily living skills to males.

1.4.1 Emotional and Behavioural Problems

Reporting broadly on behavioural and emotional difficulties, studies found that both

sex/genders with ASC presented with more difficulty on self- and parent-report measures

than their TD peers (Holtmann et al., 2007; Hurtig et al., 2009). Pisula and colleagues (2017)

found no differences between the sex/genders for adolescents with ASC, both on the parent-

reported Child Behaviour Checklist (CBCL; Achenbach and Rescorla, 2001) and self-

reported Youth Self-Report (Achenbach, 1991). In contrast, other studies found more

‘coexisting psychopathology’ for girls than boys, for example, social, attention and thought

problems rated by parents (Holtmann et al., 2007) and ‘thought problems’ both parent and

child rated (Hurtig et al., 2009).

Internalising and Externalising

There were mixed findings regarding patterns of internalising and externalising

problems between the studies. This could be due to a range of factors such as: lacking

consistency in conceptualisation and measurement; the range of perspectives reported on (i.e.

parent, self, teacher); and the broad age range of participants (5-18 years-old). However,

generally, adolescent ASC females were found to score more highly on internalising

symptoms than ASC males, whilst the opposite pattern was found for externalising

symptoms.

Internalising. Solomon and colleagues (2012) found no sex/gender differences on

‘internalising psychopathology’ or depression measured by the parent-rated Behaviour

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Assessment System for Children (Reynolds & Kamphaus, 2004) and the self-rated Children’s

Depression Inventory (Kovacs, 1992) for TD or ASC children. They found that both

sex/genders with ASC had higher depression scores than their TD peers. However, analysing

adolescents alone, ASC females had significantly higher internalising scores than ASC males

and TD females, whilst ASC boys had similar internalising scores to their TD peers.

Generally, female children and adolescents with ASC exhibited more depressive

symptoms (Oswald et al., 2016; Rynkiewicz & Łucka, 2015), showed greater irritability

(Frazier et al., 2014) and were more at risk of developing suicidal ideation and of psychiatric

hospitalisation (Rynkiewicz & Łucka, 2015) than ASC males and TD females. Oswald and

colleagues (2016) found that depressive symptoms are particularly severe for females during

early adolescence.

Additionally, ASC females exhibited greater anxiety symptoms on both parent and

self-reported measures than ASC males (Fulton et al., 2017; Hiller et al., 2014; Rynkiewicz &

Łucka, 2015; Lohr, 2017; Solomon et al., 2012), and TD females (Solomon et al., 2012).

Social anxiety symptoms were consistently higher for ASC females than ASC males (Fulton

et al., 2017; Hiller et al., 2014; Kopp & Gillberg, 2011; May et al., 2014; when rated by

parents Stern et al., 2014), a pattern found in TD children too (May et al., 2014). However,

there were some exceptions to this pattern. No differences between the sex/genders were

found for ASC groups in; self-ratings of separation anxiety, or panic in late adolescence

(Oswald et al., 2016) and self-reported anxiety symptoms (Stern et al., 2014). Lohr and

colleagues (2017) found that girls with ASC and their parents may agree more closely in their

reports of anxiety than parents of boys with ASC. This raises questions about the validity of

parent-report measures for mood disorders which may explain some of the differences in

findings.

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Externalising. Hiller and colleagues (2014) found that teachers reported substantially fewer

concerns about ASC females compared to ASC males for ‘externalising behaviours’. May

and colleagues (2014) found no differences between the sex/genders in parent-reported

ratings of ‘oppositional behaviours’ despite having more prevalence in boys than girls in TD

populations. This highlights differences in perspective based on context (i.e. school versus

home). Several studies found that, like TD children, ASC males were more likely to present

with more hyperactivity, hyperactivity-impulsivity, or have a diagnosis of ADHD than

females (Hiller et al., 2014; Kumazaki et al 2015; May et al., 2016; May et al., 2014;

Rynkiewicz & Łucka, 2015).

1.4.2 Sensory

Two studies reported on sensory profiles and both found females to have more

difficulty in their sensory responses to stimulation than males, e.g. seeking/avoiding certain

sensations (Kumazaki et al., 2015; Rynkiewicz & Łucka 2015).

1.4.3 Adaptive Functioning

Generally, ASC females were rated by their parents as having similar (Fulton et al.,

2017; Pathak et al., 2017) or better (Howe et al., 2015) adaptive daily living skills than ASC

males.

1.5 Cognitive and Motor Functions

Six studies reported on sex/gender differences in relation to some facet of cognitive

functioning. Two of these investigated cognitive profiles using the Wechsler Intelligence

Scale for Children-Japanese version (Koyama et al., 2009; Kumazaki et al., 2015).

Comparing 5 to 9 year-olds, Kumazaki and colleagues (2015) reported no significant

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sex/gender differences on any of the subtests or composites and found a relative weakness on

‘Comprehension’ and strength in Block Design for both sexes. In contrast, comparing six to

twelve-year-olds, Koyama and colleagues (2009) found that girls' subtest profiles were

relatively even and significantly different from the boys', which were characterized by a peak

on Block Design.

Investigating children’s (8-16 years) autobiographical memory and verbal-fluency

ability, Goddard and colleagues (2014) found that irrespective of ASC diagnosis presence,

females produce more detailed and emotional memories and demonstrate superior verbal-

fluency compared to boys. Similarly, Frazier and colleagues (2014) found ASC males more

likely to show a discrepancy in favour of non-verbal IQ, whilst ASC females do not show a

verbal-nonverbal discrepancy.

Measuring various motor skills (fine-motor, gross-motor, coordination, balance and

oral), Noterdaeme and colleagues (2002) found no significant differences between the sexes

on neurological examination or timed tasks in both ASC and TD children. All ASC children

had more motor problems than TD children. May and colleagues (2013) found no sex/gender

differences on sustained attention, attention switching tasks or parent-reported reading or

mathematics performance.

1.6 Other Traits

In establishing a diagnostic measure sensitive for girls with ASC (‘ASSQ-GIRL’)

Kopp and Gillberg (2011) reported on ‘other’ traits associated with ASC. They found that

certain items on their diagnostic measure were more typical of girls than boys with ASC.

These included: "avoids demands", "very determined", "careless with physical appearance

and dress", "interacts mostly with younger children", "different voice/speech" and

"difficulties completing simple daily activities". Subtle distinctions were found that

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differentiated girls from boys: girls scored higher on "different voice" whilst boys scored

higher on "robot-like language"; girls scored higher on "insists on no change" whilst boys

scored higher on "plays with other children only on own terms". It could be that these subtle

differences are impacted by gender expectations, or the way in which we frame and describe

a difficulty according to gender.

Discussion

The results from the review show a complex picture with inconsistent findings for

most of the constructs explored. Generally, on diagnostic measures differences between the

sex/genders were not found in overall scores on social communication, but there were

indications of differences in subscales and in how scores were reached. Mostly, females with

ASC showed less severe RRBIs compared to males, a pattern also found in TD populations.

No sex/gender differences were found in motor skills, or generally in adaptive functioning.

Typically, females had more difficulty with symptoms of depression, anxiety and sensory

sensitivity, whilst males were more likely to present with symptoms of hyperactivity. Few

studies measured the quality of impairments as opposed to the severity of impairments. The

studies that looked past established diagnostic measures found that ASC girls may present

with a surface-level 'look' different from the classic ASC presentation (Dean et al., 2014;

Dean et al., 2017; Parish-Morris et al., 2017; Rynkiewicz et al., 2016). Although the research

shows patterns of difference and similarity between the sex/genders, there are also

contradictions within these findings, which may be due to methodological issues. These are

explored further here.

The literature has so far focused on finding differences between girls and boys in

relation to the established diagnostic profiles or psychopathological symptoms. The findings

that, for example, there are no differences between boys and girls in overall ratings of social

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skill is not surprising given that the studies used children who have already been diagnosed,

using measures that involve assessment of social skill. Most of the studies used diagnostic

measures which were developed as diagnostic measures, and so may not be reliable or valid

as metrics of symptom severity. Moreover, the tools may have low validity in detecting the

‘female phenotype’ of ASC and may not detect subtle differences in characteristics between

the sexes (Dworzynski et al., 2012).

Additionally, the participants used would have received their diagnosis using the same

or similar instruments. Knowledge about ASCs has largely been based on observations of

males. Consequently, the instruments used in diagnosis, such as the ADI-R, may be biased

towards detection of ‘male-like’ symptoms as they have been developed using predominantly

male samples (Constantino, Zhang, Frazier, Abbacchi, & Law, 2010). By already having an

ASC diagnosis, it is possible that female participants present with signs and symptoms that

are more similar to the male phenotype of ASC. If indeed there is a ‘missed’ population of

girls as several researchers have suggested (Attwood, 2006; Giarelli et al., 2010; Gillberg,

1993; Kim et al. 2011; Mattila et al. 2011), these girls may present differently from those

with a diagnosis. In summary, the diagnostic measures may not be sensitive enough to detect

ASC symptoms in females. To develop sex/gender specific behavioural measures of ASC,

more of an understanding around the subtleties of difference in symptoms and how these

intersect with cultural expectations related to gender will need to be established.

Social Context: Perspectives and Expectations

The majority of the studies reviewed did not consider the child’s social context. For

example, the studies included participants that had already been diagnosed which in itself

may impact on other’s perceptions of the child and/or the child’s view of themselves and

therefore their behaviour. That is, parents and children may rate behaviour and emotion in the

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context that they know about the autism, perhaps noticing signs and symptoms that they may

be sensitised to through having the diagnosis.

Additionally, parent-, clinician- and teacher-reported measures are likely to be

impacted by interpreting bias, whereby decisions about what is ‘normal’ are informed by

previous experiences and gendered socio-cultural expectations. Previous evidence indicates

that parents expect more socially desired behaviour from their daughters than sons (Arliss,

1991). This might explain some of the differences found between experimental methods

where computers were used to rate ability compared to human-rated measures. For instance,

the studies using computers to rate expressive and receptive communication abilities,

consistently rated females as having greater skill (Kauschke et al., 2016; Parish-Morris et al.,

2017; Ross et al., 2015; Rynkiewicz et al., 2016), whilst in one of the same studies using the

same children, parents rated their ASC sons as having better communication skills than their

daughters on the SCQ (Rynkiewicz et al., 2016). It may be that ASC symptoms are rated as

more severe on diagnostic instruments for girls due to these higher social expectations.

Likewise, other findings from the reviewed studies may be coloured by these

gendered behavioural standards. The findings from the review that females present less with

‘restricted and fixated interests’ (Jamison et al., 2017) and ‘stereotyped use of objects’ such

as lining up or sorting behaviour (Hiller et al., 2014) may simply reflect a cultural

acceptability and/or gendered expectation that girls like organising. Evidence suggests that in

childhood, shyness is socially acceptable and even encouraged for girls but is not tolerated in

boys (Doey, Coplan & Kingsbury, 2014). Attwood (2006) suggests that ‘unusual behaviour’

displayed by a female may be more likely to be perceived as character traits acceptable for

females, such as ‘shyness’ or ‘passivity’. Parent reports, even when measured by standardised

instruments, inherently contain bias impacted by cultural and socialised understandings of

what a boy and a girl ‘should’ be like, and consequently what is expected and unusual.

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Clinicians and teachers may have different expectations and be influenced in their decision

making by their own contexts, both professionally and personally. This is further

complicated by evidence that girls may be more likely to mask certain behaviours in public

settings in order to fit in. Thus, further exploration of the context in which ASC symptoms

present and are perceived, and how parents’, teachers’ and clinicians’ expectations are

accounted for in diagnosis is needed.

Differentiating Constructs

Perhaps a challenge of the culturally prevailing medical model is that symptoms of

ASC and other difficulties are assumed to be independent, not only from the context in which

they are shaped and observed but also from one another. For example, in one of the studies

reviewed, Holtmann and colleagues (2007) reported that ASC females showed more social

impairment, social immaturity and social dependency and more inattentive, impulsive and

hyperactive as well as compulsive and bizarre behaviours on parent-rated ‘psychopathology’

ratings. However, in the same study, no differences between the sex/genders were found on

the core triad of ASC impairment as rated on the ADI-R. This highlights the difficulty in

discriminating between what is perceived to be autism and what is perceived to be part of a

similarly defined difficulty. Given the uncertainty around the aetiology of ASCs, and the fact

that they are behaviourally diagnosed, it is very difficult to decipher what is, and is not, part

of autism based on measures that are designed to detect ‘abnormality’. In psychiatric settings,

evidence shows that doctors attribute different meaning to identical symptoms according to

the patient’s gender (Malterud & Okkes, 1998) and are more likely to attribute women’s

illness to psychiatric disorders than men’s (World Health Organization, 1998). Using

Holtmann and colleague’s study as an example, although the symptoms are similar, it may be

that we understand them under the constructs of ‘emotionality’ for a girl, and ‘autism’ for a

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boy, perhaps because our social contexts make these differentiations more likely. Linked to

this, Lohr and colleagues (2017) evidenced that parents interpret girl’s ‘externalising

behaviours’ as anxiety whilst Stern and colleague’s (2014) found a difference in parents’ and

adolescents’ perceptions of anxiety. This highlights that diagnostic instruments measure

interpretations of behaviour and emotion, rather than an objective reality. Additionally, none

of the studies measuring diagnostic ratings reported on the sex/gender of the person

completing the measure. It would be interesting to explore further whether ratings are

impacted by the sex/gender of the observer.

Additionally, the studies mostly did not consider how other emotions might impact on

the presentation of autism. For example, Kim and colleagues’ (2015) study using a video

game to measure emotion recognition, may have reduced social anxieties in participants by

minimising the ‘realness’ of the situation. Interestingly, they found no sex/gender differences

in emotion recognition, and no differences between ASC and TD groups. This could indicate

that anxiety is one context which impacts on particular ASC symptoms. These interactions

warrant further exploration.

Social Context: Age and Gender

Many aspects of social functioning in TD populations are known to vary as a function

of age and gender. For example, there is evidence to suggest that before the age of 5 years-

old, girls are slightly ahead of boys in verbal skills (Bornstein, Hahn & Haynes, 2004). A

limitation of many of the studies reviewed was the nature of the between-group comparison

of males and females with ASC, sometimes not controlling for gender differences in TD

populations. The research literature suggests that parent’s perceptions, play practices and

styles of interaction differ according to their child’s sex/gender (Stern & Karraker, 1989) and

that socialisation strategies used with females provide an environment more supportive of

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social communication development than is the case for males (Bussey & Bandura, 1999;

Huttenlocher, Haight, Bryk, Seltzer & Lyons, 1991; Leaper, Anderson & Sanders, 1998;

Malatesta & Haviland, 1982). For example, TD infant girls hear more language, receive more

eye contact, and have more opportunities to engage in social-emotional interaction than infant

boys (Christensen, Bilder, Zahorodny, Pettygrove, Durkin et al., 2016). This could contribute

to observed sex/gender differences in typical development and serve as a protective factor

against social communication difficulties for females. Some studies found significant

sex/gender differences in the ability of children with ASC and TD children (e.g. in

understanding language, Ross et al, 2015; May et al., 2016). Using between-group designs we

may risk interpreting differences as showing a behavioural phenotype of ASC, when they

may simply represent a restatement of sex differences in typical development and gender

socialisation patterns.

This again, raises the question about how difference and difficulty is perceived,

according to the context within which the judgement is made. Hartung and Widiger (1998)

observed that when the expression of symptoms of a disorder differs by gender, the

development of diagnostic criteria is biased toward the gender that externalises distress and

exhibits ‘socially unacceptable’ behaviour. They propose that individuals are more likely to

be referred for assessment if they demonstrate social inappropriateness, which in turn may be

determined by the social and cultural context of the individual. TD boys showed more

externalising emotions than TD girls at toddler/preschool and middle childhood and fewer

externalising emotions than TD girls in adolescence. Similarly, ASC presentation may

change and/or be more noticeable for girls in adolescence. Boys therefore may pose more of a

challenge for others at younger ages, whilst girls may show their distress at a later point.

Accounting for these patterns in typically developing children is important for making

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interpretations of ‘abnormality’ as well as understanding why girls may not be ‘picked up’ so

early on.

Similarly, boys and girls may show their emotional distress in ways that are more

socially acceptable according to gender norms. Lohr and colleagues (2017) found that girls

with ASC and their parents agree more closely in their reports of anxiety, than boys with

ASC and their parents. This may highlight a context in which it is more socially acceptable

for girls to express anxiety than it is for boys. In one of the qualitative studies reviewed,

which explored the experience of girls with ASC, Cridland and colleagues (2014) suggest a

specific difficulty for girls may be in the context of interactions between girls being more

socio-emotionally complex than boys in adolescence. It may be that at this point distress is

noticed and becomes apparent (i.e. as the girls can no longer contain their difficulties under

increasing social and emotional pressures) where it has been camouflaged sufficiently before

this point. These aspects of experience that the qualitative literature bring, can provide a more

detailed frame to the quantitative literature’s findings and assumptions and highlight the

significance of environment, relationships and socially constructed gendered roles in shaping

presentation and experience.

The Next Steps in Understanding ASC and Gender: Future Research

Whilst there is use and value in measurement and using experimental paradigms to

explore sex/gender difference in ASCs, this review found a lack of research that was able to

locate these findings within context. Some of the studies made claims that a certain difference

between the sexes in the presentation of autism meant that girls are more likely to be missed.

However, this understanding does not account for the broader picture of how and why certain

behaviours and emotions are noticed or become distressing. It is likely that it is not the

expectations of ‘normalness’ that brings children to clinic, but the point at which the

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behaviours and/or emotions are perceived as problematic, for the person themselves or for the

people around them. An exploration of the first-hand, lived experiences of children and

adolescents and their families would help to reveal more nuanced understanding of

difference, not only in the presentation of autism according to sex/gender, but how signs and

symptoms of autism are noticed, perceived and acted upon by others.

Limitations

In the past twenty years, quantitative research has dominated the social sciences

literature. This review reflects this, showing a lack of in-depth research that explores the

subjective experience of autism in relation to gender and sex. However, it is acknowledged

that in this review, because ‘difference’ was used as a search term, that qualitative research

that included only one sex would have been overlooked. However, following initial searches

the search terms were developed to be reasonably broad and qualitative studies comparing the

experiences of boys and girls, and qualitative meta-syntheses are lacking. It is also hoped that

by checking additional literature cited in papers the risk of missing important papers was

minimised. Still, the review did not consider autobiographical literature available on the

experience of having a diagnosis of an ASC, of which there is an abundance. An interesting

area of future research might be to review this literature to identify any differences in

experience between the genders.

Summary and Conclusions

This literature review has examined what we know about the differences between

girls’ and boys’ presentation of ASCs. The majority of research has focussed on comparing

symptoms on established diagnostic profiles of ASC and found few differences in broad

social communication criteria and some suggestion that girls show less severe RRBIs.

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However, few studies have measured the quality of impairments or considered the context in

which these measurements are made.

The present focus on what the basic differences between ASC ‘symptoms’ in males

and females are, leaves unanswered the question of how the people around a child make sense

of their behaviour as typical or not and why help is sought. A recommendation is made for

qualitative research that contextualises the existing predominantly quantitative evidence in

order to enrich our understanding of personal experience and inform diagnosis.

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References

Achenbach, T. M. (1991). Manual for the youth self-report and 1991 profile Department of

Psychiatry, University of Vermont Burlington, VT.

Achenbach, T. M., & Rescorla, L. A. (2001). Manual for the ASEBA school-age forms &

profiles. Burlington: Research Centre for Children, Youth and Families, University of

Vermont Burlington, VT.

American Psychiatric Association. (2013). Diagnostic and statistical manual of mental

disorders (DSM-5®) American Psychiatric Pub.

Amr, M., Raddad, D., El-Mehesh, F., Mahmoud, E., & El-Gilany, A. (2011). Sex differences

in Arab children with autism spectrum disorders. Research in Autism Spectrum

Disorders, 5(4), 1343-1350.

Andersson, G. W., Gillberg, C., & Miniscalco, C. (2013). Pre-school children with suspected

autism spectrum disorders: Do girls and boys have the same profiles? Research in

Developmental Disabilities, 34(1), 413-422.

Arliss, L. P. (1991). Gender communication. Englewood Cliffs, NJ: Prentice Hall.

Asperger, H. (1944). Die “Autistischen psychopathen” im kindesalter. Archiv Für Psychiatrie

Und Nervenkrankheiten, 117(1), 76-136.

Attwood, T. (2006). The pattern of abilities and development of girls with Asperger’s

syndrome. Asperger’s and Girls, 1-7.

Baird, G., Simonoff, E., Pickles, A., Chandler, S., Loucas, T., Meldrum, D., et al. (2006).

Prevalence of disorders of the autism spectrum in a population cohort of children in

161


south thames: The special needs and autism project (SNAP). The Lancet, 368(9531),

210-215.

Baron-Cohen, S. (2002). The extreme male brain theory of autism. Trends in Cognitive

Sciences, 6(6), 248-254.

Baron-Cohen, S. (2005). The empathizing system. Origins of the Social Mind: Evolutionary

Psychology and Child Development, 468-492.

Baron-Cohen, S., Hoekstra, R. A., Knickmeyer, R., & Wheelwright, S. (2006). The autism-

spectrum quotient (AQ)—adolescent version. Journal of Autism and Developmental

Disorders, 36(3), 343.

Baron-Cohen, S., Knickmeyer, R. C., & Belmonte, M. K. (2005). Sex differences in the

brain: Implications for explaining autism. Science, 310(5749), 819-823.

Baron-Cohen, S., Scott, F. J., Allison, C., Williams, J., Bolton, P., Matthews, F. E., et al.

(2009). Prevalence of autism-spectrum conditions: UK school-based population

study. The British Journal of Psychiatry, 194(6), 500-509.

Begeer, S., Mandell, D., Wijnker-Holmes, B., Venderbosch, S., Rem, D., Stekelenburg, F., et

al. (2013). Sex differences in the timing of identification among children and adults with

autism spectrum disorders. Journal of Autism and Developmental Disorders, 43(5),

1151-1156.

Bornstein, M. H., Hahn, C., & Haynes, O. M. (2004). Specific and general language

performance across early childhood: Stability and gender considerations. First

Language, 24(3), 267-304.

Brugha, T., McManus, S., Meltzer, H., Smith, J., Scott, F. J., Purdon, S., et al. (2009). Autism

spectrum disorders in adults living in households throughout england: Report from the

162


adult psychiatric morbidity survey 2007. Leeds: The NHS Information Centre for Health

and Social Care.

Bussey, K., & Bandura, A. (1999). Social cognitive theory of gender development and

differentiation. Psychological Review, 106(4), 676.

Cairns, R. B., & Cairns, B. D. (1994). Lifelines and risks: Pathways of youth in our time.

Cambridge University Press.

Carter, A. S., Black, D. O., Tewani, S., Connolly, C. E., Kadlec, M. B., & Tager-Flusberg, H.

(2007). Sex differences in toddlers with autism spectrum disorders. Journal of Autism

and Developmental Disorders, 37(1), 86-97.

Christensen, D. L., Bilder, D. A., Zahorodny, W., Pettygrove, S., Durkin, M. S., Fitzgerald,

R. T., et al. (2016). Prevalence and characteristics of autism spectrum disorder among 4-

year-old children in the autism and developmental disabilities monitoring

network. Journal of Developmental & Behavioral Pediatrics, 37(1), 1-8.

Constantino, J. N., Zhang, Y. I., Frazier, T., Abbacchi, A. M., & Law, P. (2010). Sibling

recurrence and the genetic epidemiology of autism. American Journal of

Psychiatry, 167(11), 1349-1356.

Cridland, E. K., Jones, S. C., Caputi, P., & Magee, C. A. (2014). Being a girl in a boys’

world: Investigating the experiences of girls with autism spectrum disorders during

adolescence. Journal of Autism and Developmental Disorders, 44(6), 1261-1274.

Dean, M., Harwood, R., & Kasari, C. (2017). The art of camouflage: Gender differences in

the social behaviors of girls and boys with autism spectrum disorder. Autism, 21(6), 678-

689.

163


Dean, M., Kasari, C., Shih, W., Frankel, F., Whitney, R., Landa, R., et al. (2014). The peer

relationships of girls with ASD at school: Comparison to boys and girls with and without

ASD. Journal of Child Psychology and Psychiatry, 55(11), 1218-1225.

Doey, L., Coplan, R. J., & Kingsbury, M. (2014). Bashful boys and coy girls: A review of

gender differences in childhood shyness. Sex Roles, 70(7-8), 255-266.

DSM-IV-TR, A. (2000). Diagnostic and statistical manual of mental disorders, text

revision. Washington, DC: American Psychiatric Association.

Dworzynski, K., Ronald, A., Bolton, P., & Happé, F. (2012). How different are girls and boys

above and below the diagnostic threshold for autism spectrum disorders? Journal of the

American Academy of Child & Adolescent Psychiatry, 51(8), 788-797.

Fombonne, E. (1999). The epidemiology of autism: A review. Psychological

Medicine, 29(4), 769-786.

Fombonne, E. (2002). Epidemiological trends in rates of autism. Molecular

Psychiatry, 7(S2), S4.

Fombonne, E. (2003). Epidemiological surveys of autism and other pervasive developmental

disorders: An update. Journal of Autism and Developmental Disorders, 33(4), 365-382.

Fombonne, E. (2005). The changing epidemiology of autism. Journal of Applied Research in

Intellectual Disabilities, 18(4), 281-294.

Fombonne, E. (2009). Epidemiology of pervasive developmental disorders. Pediatric

Research, 65(6), 591.

Frazier, T. W., Georgiades, S., Bishop, S. L., & Hardan, A. Y. (2014). Behavioral and

cognitive characteristics of females and males with autism in the simons simplex

164


collection. Journal of the American Academy of Child & Adolescent Psychiatry, 53(3),

340. e3.

Frith, U. (1991). Asperger and his syndrome. Autism and Asperger Syndrome, 14, 1-36.

Fulton, A. M., Paynter, J. M., & Trembath, D. (2017). Gender comparisons in children with

ASD entering early intervention. Research in Developmental Disabilities, 68, 27-34.

Giarelli, E., Wiggins, L. D., Rice, C. E., Levy, S. E., Kirby, R. S., Pinto-Martin, J., et al.

(2010). Sex differences in the evaluation and diagnosis of autism spectrum disorders

among children. Disability and Health Journal, 3(2), 107-116.

Gillberg, C. (1993). Autism and related behaviours. Journal of Intellectual Disability

Research, 37(4), 343-372.

Goddard, L., Dritschel, B., & Howlin, P. (2014). A preliminary study of gender differences in

autobiographical memory in children with an autism spectrum disorder. Journal of

Autism and Developmental Disorders, 44(9), 2087-2095.

Goin-Kochel, R. P., Mackintosh, V. H., & Myers, B. J. (2006). How many doctors does it

take to make an autism spectrum diagnosis? Autism, 10(5), 439-451.

Goldman, S. (2013). Opinion: Sex, gender and the diagnosis of autism—A biosocial view of

the male preponderance. Research in Autism Spectrum Disorders, 7(6), 675-679.

Gould, J., & Ashton-Smith, J. (2011). Missed diagnosis or misdiagnosis? Girls and women

on the autism spectrum. Good Autism Practice (GAP), 12(1), 34-41.

Hartung, C. M., & Widiger, T. A. (1998). Gender differences in the diagnosis of mental

disorders: Conclusions and controversies of the DSM–IV. Psychological

Bulletin, 123(3), 260.

165


Head, A. M., McGillivray, J. A., & Stokes, M. A. (2014). Gender differences in emotionality

and sociability in children with autism spectrum disorders. Molecular Autism, 5(1), 19.

Hiller, R. M., Young, R. L., & Weber, N. (2014). Sex differences in autism spectrum disorder

based on DSM-5 criteria: Evidence from clinician and teacher reporting. Journal of

Abnormal Child Psychology, 42(8), 1381-1393.

Holliday Willey, L. (1999). Pretending to be normal: Living with Asperger’s

syndrome. London: Jessica Kingsley,

Holtmann, M., Bölte, S., & Poustka, F. (2007). Autism spectrum disorders: Sex differences in

autistic behaviour domains and coexisting psychopathology. Developmental Medicine &

Child Neurology, 49(5), 361-366.

Howe, Y. J., O’Rourke, J. A., Yatchmink, Y., Viscidi, E. W., Jones, R. N., & Morrow, E. M.

(2015). Female autism phenotypes investigated at different levels of language and

developmental abilities. Journal of Autism and Developmental Disorders, 45(11), 3537-

3549.

Hurtig, T., Kuusikko, S., Mattila, M., Haapsamo, H., Ebeling, H., Jussila, K., et al. (2009).

Multi-informant reports of psychiatric symptoms among high-functioning adolescents

with Asperger Syndrome or autism. Autism, 13(6), 583-598.

Huttenlocher, J., Haight, W., Bryk, A., Seltzer, M., & Lyons, T. (1991). Early vocabulary

growth: Relation to language input and gender. Developmental Psychology, 27(2), 236.

Jamison, R., Bishop, S. L., Huerta, M., & Halladay, A. K. (2017). The clinician perspective

on sex differences in autism spectrum disorders. Autism, 21(6), 772-784.

Kanner, L. (1943). Autistic disturbances of affective contact. Nervous Child, 2(3), 217-250.

166


Kauschke, C., van der Beek, B., & Kamp-Becker, I. (2016). Narratives of girls and boys with

autism spectrum disorders: Gender differences in narrative competence and internal state

language. Journal of Autism and Developmental Disorders, 46(3), 840-852.

Kim, K., Rosenthal, M. Z., Gwaltney, M., Jarrold, W., Hatt, N., McIntyre, N., et al. (2015). A

virtual joy-stick study of emotional responses and social motivation in children with

autism spectrum disorder. Journal of Autism and Developmental Disorders, 45(12),

3891-3899.

Kim, Y. S., Leventhal, B. L., Koh, Y., Fombonne, E., Laska, E., Lim, E., et al. (2011).

Prevalence of autism spectrum disorders in a total population sample. American Journal

of Psychiatry, 168(9), 904-912.

Kmet, L. M., Cook, L. S., & Lee, R. C. (2004). Standard quality assessment criteria for

evaluating primary research papers from a variety of fields.

Kopp, S., & Gillberg, C. (2011). The autism spectrum screening questionnaire (ASSQ)-

revised extended version (ASSQ-REV): An instrument for better capturing the autism

phenotype in girls? A preliminary study involving 191 clinical cases and community

controls. Research in Developmental Disabilities, 32(6), 2875-2888.

Kovacs, M. (1992). Children's depression inventory Multi-Health Systems North

Tonawanda, NY.

Koyama, T., Kamio, Y., Inada, N., & Kurita, H. (2009). Sex differences in WISC-III profiles

of children with high-functioning pervasive developmental disorders. Journal of Autism

and Developmental Disorders, 39(1), 135.

Kumazaki, H., Muramatsu, T., Kosaka, H., Fujisawa, T. X., Iwata, K., Tomoda, A., et al.

(2015). Sex differences in cognitive and symptom profiles in children with high

167


functioning autism spectrum disorders. Research in Autism Spectrum Disorders, 13, 1-

7.

Lawrence, K., Campbell, R., & Skuse, D. (2015). Age, gender, and puberty influence the

development of facial emotion recognition. Frontiers in Psychology, 6, 761.

Leaper, C., Anderson, K. J., & Sanders, P. (1998). Moderators of gender effects on parents'

talk to their children: A meta-analysis. Developmental Psychology, 34(1), 3.

Lohr, W. D., Daniels, K., Wiemken, T., Williams, P. G., Kelley, R. R., Kuravackel, G., et al.

(2017). The screen for child anxiety-related emotional disorders is sensitive but not

specific in identifying anxiety in children with high-functioning autism spectrum

disorder: A pilot comparison to the achenbach system of empirically based assessment

scales. Frontiers in Psychiatry, 8, 138.

Lord, C., Rutter, M. L., Goode, S., Heemsbergen, J., Jordan, H., Mawhood, L., et al. (1989).

Autism diagnostic observation schedule: A standardized observation of communicative

and social behavior. Journal of Autism and Developmental Disorders, 19(2), 185-212.

Lord, C., Rutter, M., & Le Couteur, A. (1994). Autism diagnostic interview-revised: A

revised version of a diagnostic interview for caregivers of individuals with possible

pervasive developmental disorders. Journal of Autism and Developmental

Disorders, 24(5), 659-685.

Lord, C., Schopler, E., & Revicki, D. (1982). Sex differences in autism. Journal of Autism

and Developmental Disorders, 12(4), 317-330.

Malatesta, C. Z., & Haviland, J. M. (1982). Learning display rules: The socialization of

emotion expression in infancy. Child Development, 991-1003.

168


Malterud, K., & Okkes, I. (1998). Gender differences in general practice consultations:

Methodological challenges in epidemiological research. Family Practice, 15(5), 404-

410.

Mattila, M., Kielinen, M., Linna, S., Jussila, K., Ebeling, H., Bloigu, R., et al. (2011). Autism

spectrum disorders according to DSM-IV-TR and comparison with DSM-5 draft criteria:

An epidemiological study. Journal of the American Academy of Child & Adolescent

Psychiatry, 50(6), 592. e11.

May, T., Cornish, K., & Rinehart, N. (2014). Does gender matter? A one year follow-up of

autistic, attention and anxiety symptoms in high-functioning children with autism

spectrum disorder. Journal of Autism and Developmental Disorders, 44(5), 1077-1086.

May, T., Cornish, K., & Rinehart, N. J. (2016). Gender profiles of behavioral attention in

children with autism spectrum disorder. Journal of Attention Disorders, 20(7), 627-635.

May, T., Rinehart, N., Wilding, J., & Cornish, K. (2013). The role of attention in the

academic attainment of children with autism spectrum disorder. Journal of Autism and

Developmental Disorders, 43(9), 2147-2158.

Mayes, S. D., & Calhoun, S. L. (2011). Impact of IQ, age, SES, gender, and race on autistic

symptoms. Research in Autism Spectrum Disorders, 5(2), 749-757.

McLennan, J. D., Lord, C., & Schopler, E. (1993). Sex differences in higher functioning

people with autism. Journal of Autism and Developmental Disorders, 23(2), 217-227.

Montirosso, R., Peverelli, M., Frigerio, E., Crespi, M., & Borgatti, R. (2010). The

development of dynamic facial expression recognition at different intensities in 4‐to 18‐

year‐olds. Social Development, 19(1), 71-92.

169


Noterdaeme, M., Mildenberger, K., Minow, F., & Amorosa, H. (2002). Evaluation of

neuromotor deficits in children with autism and children with a specific speech and

language disorder. European Child & Adolescent Psychiatry, 11(5), 219-225.

Oswald, T. M., Winter-Messiers, M. A., Gibson, B., Schmidt, A. M., Herr, C. M., &

Solomon, M. (2016). Sex differences in internalizing problems during adolescence in

autism spectrum disorder. Journal of Autism and Developmental Disorders, 46(2), 624-

636.

Parish-Morris, J., Liberman, M. Y., Cieri, C., Herrington, J. D., Yerys, B. E., Bateman, L., et

al. (2017). Linguistic camouflage in girls with autism spectrum disorder. Molecular

Autism, 8(1), 48.

Park, S., Cho, S., Cho, I. H., Kim, B., Kim, J., Shin, M., et al. (2012). Sex differences in

children with autism spectrum disorders compared with their unaffected siblings and

typically developing children. Research in Autism Spectrum Disorders, 6(2), 861-870.

Pathak, M., Bennett, A., & Shui, A. M. (2017). Correlates of adaptive behavior profiles in a

large cohort of children with autism: The autism speaks autism treatment network

registry data. Autism, 1362361317733113.

Pisula, E., Pudło, M., Słowińska, M., Kawa, R., Strząska, M., Banasiak, A., et al. (2017).

Behavioral and emotional problems in high-functioning girls and boys with autism

spectrum disorders: Parents’ reports and adolescents’ self-reports. Autism, 21(6), 738-

748.

Reynolds, C., & Kamphaus, R. (2004). Behavior assessment system for children, (BASC-2)

handout. AGS Publishing, 4201, 55014-51796.

170


Rivet, T. T., & Matson, J. L. (2011). Review of gender differences in core symptomatology

in autism spectrum disorders. Research in Autism Spectrum Disorders, 5(3), 957-976.

Ross, L. A., Del Bene, V. A., Molholm, S., Frey, H., & Foxe, J. J. (2015). Sex differences in

multisensory speech processing in both typically developing children and those on the

autism spectrum. Frontiers in Neuroscience, 9, 185.

Rutter, M. (1978). Diagnosis and definition of childhood autism. Journal of Autism and

Childhood Schizophrenia, 8(2), 139-161.

Rynkiewicz, A., & Łucka, I. (2015). Autism spectrum disorder (ASD) in girls. co-occurring

psychopathology. sex differences in clinical manifestation. Psychiatr. Pol. (31)

Rynkiewicz, A., Schuller, B., Marchi, E., Piana, S., Camurri, A., Lassalle, A., et al. (2016).

An investigation of the ‘female camouflage effect’ in autism using a computerized

ADOS-2 and a test of sex/gender differences. Molecular Autism, 7(1), 10.

Scott, F. J., Baron-Cohen, S., Bolton, P., & Brayne, C. (2002). Brief report prevalence of

autism spectrum conditions in children aged 5-11 years in Cambridgeshire,

UK. Autism, 6(3), 231-237.

Shattuck, P. T., Durkin, M., Maenner, M., Newschaffer, C., Mandell, D. S., Wiggins, L., et

al. (2009). Timing of identification among children with an autism spectrum disorder:

Findings from a population-based surveillance study. Journal of the American Academy

of Child & Adolescent Psychiatry, 48(5), 474-483.

Sipes, M., Matson, J. L., Worley, J. A., & Kozlowski, A. M. (2011). Gender differences in

symptoms of autism spectrum disorders in toddlers. Research in Autism Spectrum

Disorders, 5(4), 1465-1470.

171


Solomon, M., Miller, M., Taylor, S. L., Hinshaw, S. P., & Carter, C. S. (2012). Autism

symptoms and internalizing psychopathology in girls and boys with autism spectrum

disorders. Journal of Autism and Developmental Disorders, 42(1), 48-59.

Springer, K. W., Stellman, J. M., & Jordan-Young, R. M. (2012). Beyond a catalogue of

differences: A theoretical frame and good practice guidelines for researching sex/gender

in human health. Social Science & Medicine, 74(11), 1817-1824.

Stern, J. A., Gadgil, M. S., Blakeley-Smith, A., Reaven, J. A., & Hepburn, S. L. (2014).

Psychometric properties of the SCARED in youth with autism spectrum

disorder. Research in Autism Spectrum Disorders, 8(9), 1225-1234.

Stern, M., & Karraker, K. H. (1989). Sex stereotyping of infants: A review of gender

labelling studies. Sex Roles, 20(9-10), 501-522.

Supekar, K., & Menon, V. (2015). Sex differences in structural organization of motor

systems and their dissociable links with repetitive/restricted behaviors in children with

autism. Molecular Autism, 6(1), 50.

Timimi, S., Gardner, N., & McCabe, B. (2011). The myth of autism: Medicalising men's and

boys' social and emotional competence Palgrave Macmillan Basingstoke.

Van Wijngaarden-Cremers, P. J., van Eeten, E., Groen, W. B., Van Deurzen, P. A.,

Oosterling, I. J., & Van der Gaag, Rutger Jan. (2014). Gender and age differences in the

core triad of impairments in autism spectrum disorders: A systematic review and meta-

analysis. Journal of Autism and Developmental Disorders, 44(3), 627-635.

Volkmar, F. R., Szatmari, P., & Sparrow, S. S. (1993). Sex differences in pervasive

developmental disorders. Journal of Autism and Developmental Disorders, 23(4), 579-

591.

172


Wakabayashi, A., Baron-Cohen, S., Uchiyama, T., Yoshida, Y., Tojo, Y., Kuroda, M., et al.

(2007). The autism-spectrum quotient (AQ) children’s version in japan: A cross-cultural

comparison. Journal of Autism and Developmental Disorders, 37(3), 491-500.

Wang, S., Deng, H., You, C., Chen, K., Li, J., Tang, C., et al. (2017). Sex differences in

diagnosis and clinical phenotypes of Chinese children with autism spectrum

disorder. Neuroscience Bulletin, 33(2), 153-160.

Wing, L. (1981a). Asperger's syndrome: A clinical account. Psychological Medicine, 11(1),

115-129.

Wing, L. (1981b). Sex ratios in early childhood autism and related conditions. Psychiatry

Research, 5(2), 129-137.

Wing, L. (1988). The continuum of autistic characteristics. In Diagnosis and assessment in

autism (pp. 91-110) Springer. Boston, MA.

World Health Organization (1998) Gender and health: technical paper. Geneva: World

Health Organization; Report no.: WHO/FRH/WHD/98.16.

World Health Organization (2015) What do we mean by ‘sex’ and ‘gender’? World Health

Organization. http://www.who.int/gender/whatisgender/en/.

Zarokanellou, V., Kolaitis, G., Vlassopoulos, M., & Papanikolaou, K. (2017). Brief report: A

pilot study of the validity and reliability of the greek version of the social

communication questionnaire. Research in Autism Spectrum Disorders, 38, 1-5.

173


Appendix A: Table III Showing Strengths and Limitations of Reviewed Studies

Table III.

Summary strengths and limitations of papers included in the review

Paper Quality Rating

Strengths and Limitations

Baron-Cohen, Hoekstra, Knickmeyer & Wheelwright (2006)

The autism-spectrum quotient (AQ)—adolescent version.

19/2286%

- Assumes ASC construct known and measurable by parent report.- Measure not validated for adolescents before this study.- Assumes that the gender disparity is present due to essential difference. i.e. if there

are ‘missed’ populations of girl’s, these traits are not considered in discussion.- Significance of sex/gender differences on subscale scores not reported.- Adequate sample size

Cridland, Jones, Caputi & Magee (2014)

Being a girl in a boys’ world: investigating the experiences of girls with autism spectrum disorders during adolescence.

17/2085%

- Design and analysis unique in contextualising sex/gender differences.- Focus on female experience which is underrepresented in the literature.- Open-ended interview format allowed for perspectives of girls with ASC and their

families to be put first, minimising researcher control over the discussion.- Reflexivity only partially demonstrated.- Recruitment process /sampling strategy not covered in detail.

Dean, Harwood & Kasari, (2017)

The art of camouflage: Gender differences in the social behaviours of girls and boys with autism spectrum disorder.

20/2291%

- Study used TD children with ‘positive social skills’ as nominated by teachers which may have impacted on social interactions.

- Unique study design which allowed consideration of context.- Study does not capture the ongoing nature of relationships i.e. observation only

made at one point in time.- ‘Solitary time’ may have been due to children wanting this, rather than lacking skills

to engage.

174


Dean, Kasari, Shih, Frankel, Whitney, Landa, Lord, Orlich, King & Harwood (2014).

The peer relationships of girls with ASD at school: comparison to boys and girls with and without ASD.

18/2282%

- IQ of the children with ASC about 10 points below the normative average (however ASC sample recruited from mainstream school so perhaps this is representative)

- Unique study design taking into account children’s perspectives of one another socially.

- Challenging to draw conclusions from results with certainty.- Questionable ecological validity of the questionnaire (perceptions of friendship may

be impacted by many other factors e.g. self-esteem)

Frazier, Georgiades, Bishop, & Hardan (2014).

Behavioural and cognitive characteristics of females and males with autism in the Simons Simplex Collection.

18/2282%

- No TD control group- Unable to get information regarding ‘strict’ inclusion criteria for SSC database. If

criteria were very strict, some cases (and perhaps more likely female cases) may have been missed.

- Rater biases (e.g. socialised gender expectations) not considered- Risk of type 1 errors with large sample size.- ADOS becomes increasingly less sensitive and specific for higher functioning

individuals, particularly females (Van Wijngaarden-Cremers et al., 2014)

Fulton, Paynter & Trembath (2017).

Gender comparisons in children with ASD entering early intervention.

18/2282%

- Sample size not sufficiently sensitive to more subtle gender differences (i.e. on subscales)

- Females diagnosed early may not be representative to females who are not diagnosed at this point (symptoms may be more obvious behaviourally or more severe).

- No TD control group used.- Significance of each finding between male and female HFASC groups were not

reported.

Goddard, Dritschel, & Howlin (2014)

A preliminary study of gender differences in autobiographical memory in children with an autism spectrum disorder.

20/2291%

- Small sample size.- Difference in experimental autobiographical memory and children’s ability to

spontaneously remember in real life/ natural environment (validity)?- Novel study investigating memory and verbal fluency.-

Head, McGillivray & Stokes (2014)

Gender differences in emotionality and sociability in children with autism spectrum disorders.

20/2291%

- Aim to measure friendship quality. Study measured social skill rather feelings of connectedness.

- Questionnaire originally designed as a self-report measure however children were interviewed. Possibility of biasing or impacting results?

- Strength that the study considered both parent’s and children’s perspectives-

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https://www.sciencedirect.com/science/article/pii/S0891422217301828#bib0210


Hiller, Young & Weber (2014)

Sex differences in autism spectrum disorder based on DSM-5 criteria: evidence from clinician and teacher reporting.

20/2291%

- Strength that the study differentiated between parent, clinician and teacher reports from diagnostic assessments.

- Behaviours that were not seen under the conceptualisation of ASC might have been missed.

- Social and cultural sex/gender expectations are inherent in every rating. Strength that the discussion considered this.

-Holtmann, Bölte & Poustka (2007).

Autism spectrum disorders: Sex differences in autistic behaviour domains and coexisting psychopathology.

19/2286%

- Participants matched for ASD diagnosis, chronological age and full-scale IQ.- Broad age range of participants may have meant that some differences were missed

or overstated- Strength included critique of potential crossover between psychopathology and ASC

Howe, O’Rourke, Yatchmink, Viscidi, Jones, & Morrow (2015).

Female autism phenotypes investigated at different levels of language and developmental abilities.

20/2291%

- Large sample size.- ADOS may not be sensitive to females with ASC with higher IQ as these females

may be able to imitate appropriate social skills and mask any weaknesses (Lai et al. 2011). Females with more subtle ASC symptomatology that is not detected by ADOS may have been excluded.

-Hurtig, Kuusikko, Mattila, Haapsamo, Ebeling, Jussila,.& Moilanen (2009).

Multi-informant reports of psychiatric symptoms among high-functioning adolescents with Asperger syndrome or autism.

21/2295%

- Small sample size.- Strength that the study included parent, self and teacher reports

Jamison, Bishop, Huerta, & Halladay (2017).

The clinician perspective on sex differences in autism spectrum disorders.

16/2080%

- Mixed method approach could have obtained more in-depth ‘picture’ however study focussed on severity of impairment rather than quality of impairment which can be investigated through diagnostic measures.

- How the clinicians make their judgement of ‘expected’ was not considered.- Strength in critique of limitations of study.-

176


Kauschke, van der Beek, & Kamp-Becker (2016).

Narratives of girls and boys with autism spectrum disorders: gender differences in narrative competence and internal state language.

20/2291%

- Small sample with large age range. - Lack of TD boys control group.- Age and IQ matched samples- Novel design that focussed on one characteristic of ASC allowed for more in-depth

data and novel findings.-

Kim, Rosenthal, Gwaltney, Jarrold, Hatt, McIntyre, Swain, Solomon & Mundy (2015)

A virtual joy-stick study of emotional responses and social motivation in children with autism spectrum disorder.

17/2285%

- Novel experimental design- Observer bias/expectation removed due to video game design. However, also maybe

not as valid due to the ‘realness’ being minimised e.g. questionable validity of using interpersonal distance in computer game in measuring ‘social motivation’.

- Interesting way of reducing anxiety of ‘realness’ of situation by using video game- Few participants, subtle differences may not have reached significance

Kopp & Gillberg (2011)

The Autism Spectrum Screening Questionnaire (ASSQ)-Revised Extended Version: an instrument for better capturing the autism phenotype in girls?

20/2291%

- Sample size relatively small.- Bias inherent in parent ratings. Strength that this was acknowledged.- TD groups matched for IQ and age.

Koyama, Kamio, Inada & Kurita (2009)

Sex Differences in WISC-III Profiles of Children with High-functioning Pervasive Developmental Disorders.

17/2277%

- ASC girls sample size relatively small.- Information about the clinics that participants were recruited from not detailed.

Uncertain whether results can be generalised to ASC children not accessing specialist clinics.

- Age range not reported (means only).

Kumazaki, Muramatsu, Kosaka, Fujisawa, Iwata, Tomoda, Tsuchiya & Mimura (2015)

Sex differences in cognitive and symptom profiles in children with high functioning autism spectrum disorders.

17/2277%

- Sample size small. - Results not reported in detail.- No TD controls.-

Lohr, Daniels, Wiemken, Williams, Kelley, Kuravackel & Sears (2017)

The screen for child emotional disorders is sensitive but not specific in identifying anxiety in children with HF-ASD.

19/2286%

- Small sample size of ASC girls especially given the wide age range.- No control group used.- Strength is that the study considers teacher, child and parent perspectives of anxiety.-

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https://www.ncbi.nlm.nih.gov/pubmed/?term=Daniels%20K%5BAuthor%5D&cauthor=true&cauthor_uid=28824469



Does gender matter? A one year follow-up of autistic, attention and anxiety symptoms in high-functioning children with autism spectrum disorder.

21/2295%

- Cannot be generalised to ASC children not accessing specialist clinics.- Relatively small sample size.


Gender profiles of behavioural attention in children with autism spectrum disorder.

21/2295%

- Relatively small sample size -subtle differences may not have been detected.--

May, Rinehart, Wilding & Cornish (2013)

The Role of Attention in the Academic Attainment of Children with Autism Spectrum Disorder

21/2295%

- Relatively small sample size.

Noterdaeme, Mildenberger, Minow & Amorosa (2002)

Evaluation of neuromotor deficits in children with autism and children with a specific speech and language disorder.

17/2277%

- Very small sample size. Subtle differences may not have reached significance.- Conclusion perhaps stating lack of differences with too much confidence given

sample size.- Control children were matched as closely as possible to the clinical groups with

respect to age and non-verbal IQ.

Oswald, Winter-Messiers, Gibson, Schmidt, Herr, & Solomon (2016)

Sex differences in internalizing problems during adolescence in Autism Spectrum Disorder

20/2291%

- Small sample size. Subtle differences may not have reached significance.- Some of the scales have low reliability.- Strength that participants with ASC were one-to-one matched to control participants

on both IQ and sex.- Community sample used.

Parish-Morris, Liberman, Cieri, Herrington, Yerys, Bateman, Donaher, Ferguson, Pandey & Schultz (2017)

Linguistic camouflage in girls with autism spectrum disorder.

20/2291%

- Linguistic markers measurable without observer bias/ expectation. - Only small sample of TD control participants included

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Pathak, Bennett & Shui (2017)

Correlates of adaptive behavior profiles in a large cohort of children with autism: The autism speaks Autism Treatment Network registry data.

17/2277%

- Participants used were diagnosed using ADOS which may not be sensitive to females with ASC with higher IQ as these females may be able to imitate appropriate social skills and mask any weaknesses (Lai et al. 2011). Females with more subtle ASC symptomatology that is not detected by ADOS may have been excluded.

- No control used to investigate differences in TD children.

Pisula, Pudło, Słowińska, Kawa, Strząska, Banasiak & Wolańczyk (2017).

Behavioral and emotional problems in high-functioning girls and boys with autism spectrum disorders: Parents’ reports and adolescents’ self-reports.

19/2286%

- Small sample size and unrepresentative sample of community girls with ASC.- Age and IQ matched samples- Multiple perspectives measured (parent and self-report measures)- Validity of measures not reported.

Ross, Del Bene, Molholm, Frey & Foxe (2015)

Sex differences in multisensory speech processing in both typically developing children and those on the autism spectrum.

19/2286%

- In depth analysis of social communication using design which controls for rater bias- Ability to read visual speech cues and integrate them very specific ability and a

small component of social communication (validity).

Rynkiewicz & Łucka (2015)

Autism spectrum disorder (ASD) in girls. Co-occurring psychopathology. Sex differences in clinical manifestation.

14/2264%

- Small sample with large age range. - No TD control group.- Research has shown parent reports of ‘psychopathology’ not to be consistent with

adolescent reports (e.g. Stern et al., 2014).

Rynkiewicz, Schuller, Marchi, Piana, Camurri, Lassalle & Baron-Cohen (2016)

An investigation of the ‘female camouflage effect’ in autism using a computerized ADOS-2 and a test of sex/gender differences.

15/2268%

- Small sample with large age range. - No TD control group.- Using gestures more frequently and vividly assumed to be better use of

communication.

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Solomon, Miller, Taylor, Hinshaw & Carter (2012)

Autism symptoms and internalizing psychopathology in girls and boys with autism spectrum disorders.

20/2291%

- Relatively small sample size. Possibility of type II errors.- Measures not validated for ASC children/adolescents.

Stern, Gadgil, Blakeley-Smith, Reaven & Hepburn, (2014)

Psychometric properties of the SCARED in youth with autism spectrum disorder.

19/2286%

- No TD control group.- Small female ASC sample- Measure not validated. Anxiety Disorders Interview Schedule (ADIS) used as ‘gold

standard’ for anxiety diagnosis although reliability not been established in ASC populations.

Supekar & Menon (2015)

Sex differences in structural organization of motor systems and their dissociable links with repetitive/ restricted behaviours in children with autism.

19/2286%

- Females with more subtle ASC symptomatology that is not detected by ADI-R may have been excluded.

- No TD controls.

Wakabayashi, Baron-Cohen, Uchiyama, Yoshida, Tojo, Kuroda & Wheelwright (2007)

The autism-spectrum quotient (AQ) children’s version in Japan: a cross-cultural comparison.

19/2286%

- Females with more subtle ASC symptomatology may have not been included in this study.

- TD controls were not IQ or age matched.

Wang, Deng, You, Chen, Li, Tang, Ceng, Zou, Zou (2017)

Sex Differences in Diagnosis and Clinical Phenotypes of Chinese Children with Autism Spectrum Disorder

18/2282%

- Females with more subtle ASC symptomatology may have not been included in this study.

- Females who have been diagnosed at a young age may be showing different/more severe or obvious traits than girls not diagnosed at this age.

Zarokanellou, Kolaitis, Vlassopoulos & Papanikolaou (2017)

Brief report: A pilot study of the validity and reliability of the Greek version of the Social Communication Questionnaire.

17/2277%

- Not much information about where participants were recruited from.- Samples not matched age or IQ matched. - Small sample size means subtle differences may not have reached significance.

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Part 3: Clinical Experience on Training

Year 1

Adult Placement (12 months)

I spent my first year of clinical training working within a community adult recovery and support team. My main role was conducting psychological assessments, formulation and interventions and I gained experience of delivering evidence based psychological interventions, primarily Cognitive Behavioural Therapy (CBT) with adults presenting with a range of complex problems. Client’s difficulties ranged in severity and were varied in terms of psychiatric diagnoses, including obsessive compulsive disorder, panic disorder and acrophobia, bipolar affective disorder, depression, psychosis and bulimia nervosa binge eating disorder. I also worked closely alongside my multi-disciplinary team (MDT) colleagues in order to formulate and deliver interventions. I also co-facilitated a CBT group for people diagnosed with attention deficit hyperactivity disorder with another clinical psychologist.

In addition to therapeutic interventions I undertook psychometric and neuropsychological assessments. I provided informal consultation to the MDT as well as delivering training to the team on attachment and structured clinical management. Whilst I was on placement I evaluated the therapy outcomes of two of the recovery and support teams and wrote this up for my service evaluation project.

Year 2

Learning Disability Placement (6 months)

On my learning disability placement I worked within a community service which was a joint health and social care team. I delivered 1:1 therapy, which was adapted in order to make it accessible and used a range of approaches including CBT, positive behaviour support PBS, mindfulness and systemic approaches for clients with anger, low mood and anxiety. Approaches were flexible in order to make therapy as accessible and meaningful as possible. I also co-facilitated a bereavement group with my supervisor in a supported living home. I completed psychometric and neuropsychological assessments as part of assessments for a diagnosis of a learning disability, as well as using adapted measures to assess dementia. In addition to formal reports I wrote client accessible reports. I was often asked to work with the team to manage issues of capacity and consent and completed an assessment related to the capacity to consent to sexual relationships. I offered systemic consultations to families and

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residential care homes for managing challenging behaviour and would use integrative assessments and observations to develop Positive Behavioural Support (PBS) plans. I also delivered some joint training for bus drivers with my supervisor on Autism Spectrum Disorders.

Child Placement (6 months)

My child placement was in a community Child and Adolescent Mental Health Team (CAMHS). My main role was to provide assessment, formulation and focussed interventions to young people with mild to moderate mental health problems. I had opportunity to work with young people with a range of difficulties including separation anxiety, depression and Autism Spectrum Conditions, drawing upon CBT, systemic, interpersonal psychotherapy, narrative and psychodynamic approaches.

I also completed two cognitive assessments using the Wechsler Intelligence Scale for Children (WISC) and carried out a school observation as part of this. I co-facilitated a CBT group for parents of children with anxiety with an assistant psychologist colleague. I also had the opportunity to be part of a reflecting team using a one-way screen, as well as observing and reflecting on an art psychotherapy group for children with anxiety. I also helped to deliver training to multi-agency professionals on ‘depression in adolescence'.

Year 3

Older Adult Placement (6 months)

My older adult placement was split between a memory assessment clinic, older adult community mental health team and community dementia support service. I had a role in completing dementia assessments using a comprehensive battery of neuropsychological tests, observations and family interviews.

I also carried out psychological assessments, formulation and interventions. These focussed on a range of difficulties including anxiety, depression and adjusting to dementia using systemic and psychodynamic approaches. I co-facilitated a psychosocial peer group programme, the Living Well With Dementia group, with my supervisor for people with a recently diagnosed dementia with my supervisor. I also delivered a Dementia Information Group for people with a recent diagnosis of dementia and their families, using a psychoeducational approach with an occupational therapist colleague. I was also involved in carrying out assessment and consultation to residential cares homes to help staff with managing behaviour that challenges.

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Specialist Placement (6 months) Adult Oncology (Family)

My final and specialist placement was based within a specialist cancer hospital. I worked with adults diagnosed with cancer, and their families. My main role was to provide assessment, formulation and interventions for people with a diagnosis of cancer who had dependent children. I also worked with young adults with cancer and their families. I used systemic approaches to help people with a variety of challenges and questions around adjustment including: communicating with and meeting their children’s attachment needs; coping with change and uncertainty of health; existential questions; low mood and anxiety. Some of the work was carried out 1-1 however work was often with more than one family member. I developed and co-facilitated a narrative therapy Tree of Life group with a trainee clinical psychologist for young people who had recently had a specific bone marrow treatments.

I co-delivered training to nurse colleagues on the psychosocial impact of cancer on children, with my supervisor. I was also involved in initiating a team around a patient meeting for a patient with potential risk issues and consulted regularly at weekly palliative care MDT meetings.

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Part 4: Table of Assessments Completed During Training

Year I AssessmentsASSESSMENT TITLE

WAIS WAIS Interpretation (online assessment)

Practice Report of Clinical Activity

Cognitive Behavioural Therapy with a man in his fifties presenting with symptoms of depression, panic and delusions

Audio Recording of Clinical Activity with Critical Appraisal

Critical appraisal of an audio recording of clinical activity with a male client in his 60s presenting with OCD and depression.

Report of Clinical Activity N=1

Cognitive Behavioural Therapy with a woman in her thirties presenting with symptoms of panic disorder with agoraphobia

Major Research Project Literature Survey

Is contemplation of your own death good for you? A review of the effects of the ‘death reflection’ manipulation

Major Research Project Proposal

What are the processes by which parents and caregivers of females with an Autism Spectrum Disorder (ASD) without cognitive impairment come to understand their child’s behaviours as requiring intervention?

Service-Related Project An evaluation of psychological therapy outcomes in two community adult recovery and support teams

Year II AssessmentsASSESSMENT TITLE

Report of Clinical Activity – Formal Assessment

A learning disability assessment for a man in his early twenties

PPLD Process Account Reflections from my experiences of the first two years of Personal and Professional Learning Discussion Group

Year III Assessments ASSESSMENT TITLE

Presentation of Clinical Activity

Resilience building with a five year old girl using an integrative approach: Attachment Narrative Therapy

Major Research Project Literature Review

A review of the differences in the presentation of girls and boys with Autism Spectrum Conditions without cognitive impairment

Major Research Project How parents understand their daughters behaviour before

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Empirical Paper they receive a diagnosis of an Autism Spectrum Condition

Report of Clinical Activity

A Couple’s Intervention to Adjust to Dementia

Final Reflective Account

On becoming a clinical psychologist: A retrospective, developmental, reflective account of the experience of training

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