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E-Thesis

How do young children on the autistic spectrum make sense of themselves?: A

Thematic Analysis

By

Rebekah Louise Easton

Submitted in partial fulfilment of the Degree of

Doctor of Psychology(Clinical Psychology)

School of PsychologyFaculty of Health and Medical Sciences

University of SurreyGuildford, SurreyUnited KingdomSeptember 2019

© Rebekah Louise Easton 2019

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Statement of Originality

I confirm that the submitted work is my own work and that I have clearly identified and fully

acknowledged all material that is entitled to be attributed to others (whether published or

unpublished) using the referencing system set out in the programme handbook/other

programme research guidance. I agree that the University may submit my work to means of

checking this, such as the plagiarism detection service Turnitin® UK. I confirm that I

understand that assessed work that has been shown to have been plagiarised will be

penalised.

Signature:

Name: Rebekah Louise Easton

Date: 04.04.19

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Contents

Overview

Acknowledgements

Part 1: Major Research Project Empirical Paper

Abstract

Introduction

Method

Results

Discussion

References

Appendices

Part 2: Literature Review

Abstract

Introduction

Method

Results

Discussion

References

Appendices

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Overview

Only recently have researchers begun to study how people with Autism Spectrum

Conditions (ASC) understand themselves in terms of identity and self-concept. In order to

understand how young people with ASC make sense of themselves it is important to take a

developmental perspective from early years to adulthood. Thus, this thesis aimed to

investigate how young children with ASC make sense of themselves. Part one of this

portfolio presents a review of the literature surrounding the development of self-concepts of

children and adolescents with ASC. The findings of the review show that within the literature

there is a focus on the experiences of older males from Western cultures who are verbal and

cognitively able. The main themes identified surround experiences and perceptions of a

diagnosis, comparison to others, friendship and own self-perception. Part two presents an

empirical paper that sought to explore how young children with ASC make sense of

themselves, while also considering the social aspect of self-concept. Three aspects of the self

emerged as being important to these children with ASC; the personal-self (physical

appearance & personal qualities), the emotional-self (communicating & managing feelings)

and the social-self (making sense of the self in relation to others). These findings suggest that

while clinicians tend to focus on differences, these children with ASC perceive themselves as

having many commonalities with their neurotypical peers.

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Acknowledgements

I would like to thank my Major Research Project supervisor, Kate Gleeson for her

guidance, expertise and emotional support and helping me to remember that things will get

done. Thank you for encouraging me to keep going; ‘bird by bird’. I also wish to thank the

Headteachers of the schools where my research was carried out; for trusting me in spending

time with your pupils and a special thanks to the children who participated in my research –

without you there would be nothing to write about!

Thank you to everyone who has been part of this journey with me; placement

supervisors, colleagues and clients. You have helped to develop my skills and confidence as a

psychologist and provided me with some pearls of wisdom along the way.

Finally, I would like to thank my family, Brian the fury feline for endless cuddles, and

some wonderful friends, without whom it would not have been possible. A special thanks to

Holly and Kat for always providing the wine, chocolate and time to chat. Finally, a huge

thank you to Shelia – for your endless banter and for holding the hope in times of ‘Doom’.

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Major Research Project Empirical Paper

How do Young Children on the autistic spectrum make sense of themselves? : A Thematic Analysis

Word Count: 9,999

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Statement of Journal of Choice

This literature review is written with the view of submitting to a peer-reviewed journal. The

journal of choice for this review is Autism. This journal has an impact factor of 3.91 and is

published eight times a year by Sage Publications in association with the National Autistic

Society. It is interdisciplinary in nature and publishes research of practical and direct

relevance to aid improvements in the quality of life for people with autism or autism-related

disorders. It accepts research reports in a multitude of areas including reports describing new

empirical findings and reports surrounding psychological processes making it an appropriate

journal of choice.

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Abstract

Introduction: In order to understand how young people who have a diagnosis of an Autistic

Spectrum Condition (ASC) make sense of themselves it is important to take a developmental

perspective from early years into adulthood. However, most of the research literature on self-

concept in young people with ASC neglects younger children.

Objective: This study sought to explore how younger children with an ASC make sense of

themselves, while also considering the social aspect of self-concept.

Participants: One girl and five boys (aged 5-7 years), who had received a diagnosis of an

ASC without cognitive impairment, or another comorbid diagnosis, were invited to take part

in two activity-orientated semi-structured interviews.

Design: Transcripts were analysed using Thematic Analysis focusing on the content in the

children’s interviews that related to their self-concept.

Findings: Three themes (with 4 subthemes) emerged that related to self-concept; the

personal-self (personal qualities & physical appearance), the emotional-self (managing &

communicating feelings) and the social-self (making sense of the self in relation to others).

Conclusions: Although clinicians tend to focus on differences, these findings suggest that

children with ASC perceive themselves to have many commonalities with their neurotypical

peers. This insight may be helpful for families when receiving a diagnosis of ASC as well as

for educators when creating inclusive environments and providing ongoing support to a child

throughout their education. Further research should explore factors that may affect the

development of self-concepts such as culture and gender.

Key words: Autistic Spectrum Conditions, Children, Identity, Self-concept, Friendship

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A review of the literature exploring the self-concepts of children and adolescents with

a diagnosis of Autistic Spectrum Conditions (ASC)1 revealed that research focused largely on

the self-understanding of older children. The research concludes that a developmental

perspective is needed to fully understand how people with ASC make sense of themselves.

This gap in the literature must be addressed, specifically focussing on the self-understanding

of young people in lieu of sufficient empirical exploration.

Currently, ASC are mainly conceptualised within a medical model framework and are

typically viewed as neurodevelopmental disorders. The scientific and medical literature often

reflects this, characterising ASC as a ‘truth’ to be discovered (Timimi, Gardner & McCabe,

2011). There are continuing discussions about what this ‘truth’ is, but, ASC are typically

associated with biological, genetic, neurological or chemical abnormalities (Molloy & Vasil

2002; National Institute for Health and Care Excellence [NICE], 2011). However, the

underlying cause for ASC is unknown and while widely viewed as a condition causing

neurological impairment, the nature of the specific area which causes this abnormality or

impairment is ambiguous (Volkmer, Lord & Bailey., 2004).

Recent research has investigated if and how ASC can be viewed as a ‘social

construct’, particularly regarding the way they are recognised and labelled (Nadesan, 2013).

Many have suggested that ASC as a diagnostic category are shaped within a socio-cultural

context of normalness versus difference (Biklen, 2005; Molloy & Vasil 2002; Smukler, 2005;

Timimi, 2004). Diagnostic approaches allude to ASC as a classification of people who share

‘differences’ from societal norms, instead of acknowledging a neurological or biological

basis to the condition. The theoretical understanding adopted in social constructivism

recognises philosophical and cultural values that a diagnosis is based on, aiding explanation

1 I will use the term Autism/Autistic Spectrum Conditions (ASC) instead of Autism Spectrum Disorders (ASD) throughout this paper to avoid implying a ‘disordered’ person (Baron-Cohen, Scott, Allison, Williams, Bolton et al., 2009) and to encourage less stigmatising language.

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surrounding how difficult it may be to define what is considered ‘normal’ or ‘abnormal’

(Biklen, 2005; Nadesan, 2013; Smukler, 2005). This may be a culturally or historically

contingent decision, rather than a universal truth. This stance has impacted the way ASC

literature has developed; taking a deficit approach when describing traits which people with

ASC ‘lack,’ such as theory of mind.

ASC and Theory of Mind

Baron-Cohen, Tager-Flusberg and Cohen (2000) explain that by the age of four-five

years old neurotypical children (NT-children) begin to notice and understand cues from other

people’s behaviour which are indicative of what they are thinking, believing or feeling. They

have started to acquire what is currently known as ‘theory of mind’ (ToM). However,

previous research has consistently demonstrated that people with ASC experience difficulties

in understanding and predicting the thoughts, feelings and behaviours of other people (for a

review see Baron-Cohen, 2008). Schneider, Slaughter, Bayliss and Dux (2013) describe

individuals with ASC as being impaired in processing the mental states of others, thus

adopting a deficit approach to ToM. Current research suggests people with ASC have

difficulties in appreciating and conveying their own state of mind to others (Butler & Green,

2007).

Development of self-concepts

Identity as a concept, or self-concept, has different meanings in different contexts.

The notion of ‘self-concept’ within the exiting literature is ill-defined and many words (self-

image, self-concept, self-esteem and identity) are used interchangeably (Butler & Gasson,

2005). However, Cooley (1902) and Mead (1934) describe self-concepts as evolving from

social interactions with others; seeing the self as a reflection of how others see you (the

looking-glass self, Cooley, 1902). Therefore, the self-concept is considered to change over

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the course of individual development, a notion widely accepted within the literature.

Furthermore, both Cooley (1902) and Mead (1934) proposed that social development and the

development of our self-concept are interlinked, developing alongside each other.

Self-concepts typically comprise cognitive, physical and psychological attributes,

coupled with social and interpersonal dimensions that enable connection to society,

amalgamation into a social-cultural world and show difference from others. Given the rapid

developmental trajectory of childhood, it is likely that self-concept undergoes many changes

over this life stage (Shaffer & Kipp 2007).

Beliefs are defined as information others think to be true whilst desires are defined as

a reflection of wants and needs which serve satisfaction/motivational functions (Green,

1992). Between the age 3-4, ToM in NT-children advances from a ‘desire theory,’ (where

actions are thought to be a reflection of desires), to a ‘belief-desire theory,’ where there is

awareness that beliefs and desires may determine behaviour (Wellman, Cross & Watson,

2001). Once a child achieves this milestone, they are better able to discriminate between an

inner, private self and a more public orientated self (Sodian, Taylor, Harris & Perner, 1991).

This promotes the ability to explain and understand others’ behaviour; aiding their self-

concept development. In later childhood and adolescence NT-children begin to gain

knowledge of how qualities such as their beliefs, attitudes and values might interact with each

other and with situational influences to influence behaviour (Damon & Hart, 1988).

Social interaction and comparison in developing self-concept

People with ASC are understood to have difficulty understanding and coping with

social environments (Baron-Cohen, 1989). Psychological accounts of ASC tend to focus on

the social context (Baron-Cohen, Leslie & Frith, 1985) as opposed to internal mental states

(Frith & Happe, 1999). However, it is likely that the mechanisms underpinning the ability to

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understand the mental states of others are the same as those required for attributing and

reflecting on one’s own mental state. Therefore, understanding of self-concept is also likely

to be impaired (Johnson & Filliter, 2009). Within the neurotypically developing population,

knowledge of others and own self-concepts tend to develop in parallel (Bosacki,

2000). Gopnik and Meltzoff (1994) explain that when children can report their own mental

states, they can also report on others’ mental states, likewise, when they are unable to report

the psychological states of others, they do not report those states in themselves.

Supporting this, Meyer and Hobson’s (2004) suggested that in order to understand ourselves,

we must be able to understand others. Therefore, if self-concept evolves from social

interactions and we make sense of ourselves through other people’s reactions to us, the

following question must be asked: how does a child with ASC understand their self-concept?

Clearly self-concept plays an important role in the development of friendship. The little

research conducted has mainly focused on academic self-perceptions – individual’s

perception of their diagnosis in comparison to others and own self-perception.

Tammett (2006) reminds us that some individuals with ASC would like to engage in

friendships, but that some of these individuals may struggle to establish and maintain

friendships with others. Previous research has demonstrated both young children and

adolescents with ASC report feelings of loneliness (Bauminger & Kasari, 2000). This is

important to consider in light of other research surrounding the development of a positive

self-concept. Researchers have suggested growth of a positive self-concept is linked to

forming positive relationships such as friendships, and both positive self-concept and

relationships are linked to a sense of well-being for children and adolescents (Gest, Graham-

Bermann & Hartup, 2001; Ladd, 1999, Ladd & Trapp-Gordon, 2003).

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The complexity of friendships increases with age, moving from external, behaviour-

based functions such as playing games, to internal functions such as intimacy (Eccles, 1999).

Researchers have suggested this is linked to the development of our self-concept, which

develops through social interactions. However, research surrounding the self-concept of those

with ASC and how this relates to friendships/relationships is in its infancy. The research so

far suggests children with less severe ASC, who are more socially advanced and who can

maintain relationships with others, have fewer peer relationships during middle childhood

when compared to NT-peers (Sigman & Capps, 1997). As the ability to establish and

maintain relationships comes to be increasingly important in early adolescence (Buhrmester,

1990) much of the research has focused on this age group; for example Humphrey and Lewis

(2008) supported the importance of friendships for developing positive self-concept in

adolescents with ASC. However, self-perception and perception of others grows before this

age and is considered important in the development of self-concepts (Frith & Hoppe, 1999),

yet little research has been conducted with younger children.

Reviewing the literature

Research into the self-perceptions of those with ASC is in its infancy and much of the

existing literature has studied adolescents and adopted a deficit approach. For years the

development of self-concepts has garnered clinical and empirical attention. However, the way

in which children with ASC conceptualise themselves has not been researched in the same

depth when compared to NT-children. Whilst some qualitative research has explored how

high-functioning individuals with ASC make sense of themselves, none has investigated this

specifically in relation to young primary school children with ASC. Most existing research

focuses on (male) adolescents’ experiences; in other words, in those older than twelve

(Winstone, Huntington, Goldsack, Kyrou & Millward, 2014; Cage, Bird & Pellicano, 2016;

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Baines, 2012; Mogensen & Mason, 2015; Huws & Jones, 2015; Farley et al, 2010). Within

this literature there is an emphasis on the experiences and perceptions of receiving a

diagnosis, drawing comparisons to others, the role of friendship and one’s own self-

perception.

Moreover, much of the research involving children and adolescents with ASC

recruited participants from special needs schools (Winstone et al., 2014; Huws & Jones,

2015; Farley, Lopez, Saunders, 2010; Skovlund, 2014; Farmer, Robertson, Kenny &

Siitarinen, 2007). The only study conducted with younger participants (aged seven-to-

eleven), was in a special needs school (Skovlund, 2014). This is surprising considering that

the idea of inclusion is important in social and educational policy (Paliokosta & Blanford,

2010). This may under represent the experience of younger students in mainstream schools

and thus the research does not capture a representative sample of this population - preventing

helpful practices from being developed to support children in these settings. Thus, an

exploratory study is needed to facilitate a developmental perspective to understanding the

experiences of young children with ASC in a mainstream school environment.

Choice of methodology

Individuals with ASC can be considered as a marginalised group in educational and

social contexts (Billington, 2006). Previous research has noted research with these

participants is often conducted ‘on’ rather than ‘with’ them (Humphrey & Parkinson, 2006).

Qualitative methodologies are more collaborative, and aim to further understand how people

create meaning from events and how individual perceptions are shaped by the social world

(Miles & Huberman, 1994). Therefore, an explorative qualitative approach may be

appropriate to further our understanding of how young children with ASC understand their

self-concepts. There is little qualitative research in this field (Williams, Gleeson & Jones,

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2017), therefore an approach using semi-structured activity-based interviews would provide

the participants with a voice, would fit with a critical realist perspective and support

researcher understanding while situating participants’ understanding in their own language

and in the context of their individual world of meaning (Giorgi & Giorgi, 2003).

Research aim

Only recently has research begun to explore ways in which people with ASC

understand themselves in terms of their self-concepts. This study is designed to be a

preliminary, exploratory investigation into the way young children (aged five-seven) with

ASC make sense of themselves. Previous research has identified mental health issues

associated with low self-esteem and the negative school experiences of adolescents with ASC

(Bagatell, 2007; Barnhill & Myles, 2001; Humphrey & Symes, 2010), highlighting the

importance of effective intervention at this developmental stage. This research may therefore

inform appropriate preventative interventions and the provision of best support at this life

stage may enable a smoother transition into later school years. This in turn may lead to a

reduction in the likelihood of secondary mental health problems. Therefore, this study aims to

understand how young children with ASC make sense of themselves.

Method

Research Design: A qualitative approach was employed to collect data via two activity-

orientated semi-structured interviews. Analysis was conducted using inductive thematic

analysis (TA) (Braun & Clarke, 2013).

Participants: In line with Braun and Clarke’s (2013) suggestions for a small project

employing TA the researcher aimed to recruit six-ten participants. This sample size was used

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to map out qualitatively different or similar patterns observed and provide a new

understanding of experience (Sandelowski, 1995).

Participants were six pupils (five males; one female) with ASC (five–seven years old)

drawn from three mainstream primary schools in the same borough of North London. Four

participants were African or of mixed African/Caribbean-British heritage and two were

European. Two participants spoke a Non-European additional language and one spoke a

European additional language. Only one of the children had a full-time one-to-one teaching

assistant. Pseudonyms are used to preserve anonymity.

Characteristics of school locations: Within this borough 48.7% of the population are

non-White British and a large proportion of its residents are Black-Caribbean and Black-

African (Office of National Statistics (ONS), 2009). In all schools the pupils are from a range

of minority ethnic backgrounds; the majority from Black African heritages. Additionally, 75-

97% of children speak English as an additional language and between 40-60% of children

were eligible for Pupil Premium; above the national average (25%). In one of the schools

their deprivation indicator is 0.5; significantly higher than the national average.

Recruitment: Mainstream primary schools were contacted via email; Headteachers

from three gave permission for the research to be completed.

Headteachers and Special Education Needs Co-ordinator’s (SENCOs) identified

pupils who fulfilled the inclusion criteria in that they were: aged five–seven years old, had a

formal diagnosis of Autism or Asperger syndrome, did not have a comorbid diagnosis of

Attention Deficit Hyperactivity Disorder (ADHD) and spoke English fluently. After

identifying eligible children, the researcher discussed with Headteachers/SENCOs if the child

would be able to linguistically complete activity-based semi-structured interviews. If so,

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parents were contacted, via letter (example given in Appendix B), and invited to take part in

the research.

Parents who expressed an interest were given information packs and invited to return

the consent form and Social Communication Questionnaire (SCQ, Appendix C, D & E).

There was an option for parents to meet with, or speak to the researcher over the phone, to

discuss concerns and make further enquires. Four parents opted to do this in person and two

over the phone.

Participants were approached by the researcher and a staff member that knew them

well to discuss the research (including the participant information sheet; Appendix F) and to

ask for their assent (Appendix G).

Data collection tools and equipment:

The SCQ: The participant’s diagnosis was confirmed using the SCQ Lifetime version, for

more information see Appendix H.

Semi-structured interviews: Semi-structured activity-orientated interviews were used to

provide a voice for ASC participants and a window into their thought’s feelings and

experiences (Humphrey & Parkinson, 2006). These interviews permitted the researchers to

explore complex issues surrounding the participant’s views and experiences of themselves

and their peer relationships. Participants were interviewed on two occasions avoiding putting

undue burden on them at any one time. The second interview enabled the researcher to follow

up on any issues needing clarification and to explore whether the participants had any

additional thoughts. The interview schedule was discussed with a member of the Service

Users and Carers Advisory Group at the University of Surrey, who has a child with ASC. The

first interview focused on self-perception and included questions surrounding the participants

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likes and dislikes as well opportunities for the children to draw pictures of themselves. The

second interview focused on the participant’s perception of themselves in relation to their

peers and included questions about their class; who their friends are and what makes them

their friends. During this interview children had the opportunity to draw pictures and choose

Playmobil characters that represented themselves and their friends (for further details of the

interviews see Appendix I & J). The content of the interviews were developed surrounding

self-perception and perception of themselves in relation to their peers as a result of the

emerging themes (‘own self-perception’, ‘comparison to others’ and ‘friendship’) from the

literature review.

Procedure: Participants were interviewed twice within two weeks by the researcher in a

quiet room on school premises. The interviews ranged between 20-40 minutes, they were

audiotaped and transcribed verbatim.

Ethical issues: This study was given favourable ethical opinion by the University of Surrey

Faculty of Health and Medical Science Ethics Committee (Appendix K). As previously

described, informed consent was sought at three levels; school, parent and pupil (assent).

Ethical standards defined by the British Psychological Society (2014) and including areas

such as anonymity and right to withdraw were adhered to. Other considerations were also

relevant as the research centred on potentially sensitive issues such as peer relationships.

Thus, the researcher was aware that topics such as bullying might be raised and that

participants may become distressed. Therefore, it was agreed that (see risk assessment

Appendix L) in such circumstances the researcher would discontinue the interview and seek

support from a member of staff who knew the pupil well.

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Furthermore, it was important for children not to miss subjects at school they

particularly enjoyed, or were behind in and every attempt was made to minimise disruption to

normal working patterns. Therefore, data was collected during assembly or form time.

Analytic Procedure: Inductive TA was employed to analyse the data at the semantic level.

TA is said to afford researchers with flexibility of epistemological position in combination

with enabling the development of themes across data sets (Braun & Clarke, 2006). It was

deemed the most appropriate analytic approach due to the participants’ age. The critical

realist epistemological position was assumed during analysis. This approach sits between

realist and constructionist views and so supported both appreciation of the children’s own

perspectives being expressed within the interviews and the role of school context, interviewer

and methodology in constructing their responses (Smith & Elger, 2014). Interviews were

transcribed in full by the researcher and a transcription company (a confidentiality agreement

was agreed - Appendix M). The drawings completed by the participants and Playmobil

characters selected were used to aid in building an alliance with the participants and as a tool

to facilitate discussion but were not analysed.

The interviews were analysed using inductive TA based on methods outlined in Braun

and Clarke (2006) and Lyons and Coyle (2016). The audio recordings were transcribed

verbatim and the transcripts were read through separately numerous times. Following this,

codes were identified to summarise items of interest which related to the research question.

Coding was carried out for each child’s pair of interviews (see Appendix N for a worked

example of the analysis process). Comparison of codes across the transcripts allowed

categories to be identified which were then collated and developed into sub-themes.

Emerging themes and subthemes incorporating the codes were reorganised until they were

consistent with the data and echoed the participant’s perspectives. See Appendix O for further

details of the analysis process.

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In line with principles underlying TA themes were derived from the content of the

activity-based semi-structured interviews. They were developed once the researcher felt there

was sufficient material across the data set to recognise, interpret and describe a theme. Many

participants contributed to each of the themes, but the frequency with which the children

spoke about information pertinent to each theme is not considered and it is not understood

within such an approach to reflect the importance of them. Furthermore, within a qualitative

study it is important to consider that the sampling strategy is not intended to create a

representative sample. The researcher is therefore beholden to focus on interpreting the data

to identify themes, but can make no judgement about the prevalence of themes in any

population. This study purposefully aimed to recruit a sample that was of mixed heritage but

the sample was an opportunity sample and doesn’t represent specific ethnic populations in

any way. Thus, due to this sampling strategy the number of times information pertinent to a

theme is spoken of may not reflect its salience or prevalence within a wider population, and is

not transferable to any specific group.

Credibility & reflexivity: As all the data was collected and analysed by the main researcher

several credibility checks were adhered to through the coding process, and when developing

the final codes and themes; the researcher shared and checked their work with the research

supervisor, as well as peers conducting qualitative research. Furthermore, the researcher

observed Yardley’s (2000) principles of quality in qualitative research and to increase

credibility, the researcher reflected throughout the research process and kept a reflexive diary

following each interview (for an example see Appendix P). This was used to attempt to

understand the researcher’s role in the production of data (Finlay, 2014). Regular supervision

also facilitated this process, supporting the researcher in identifying any assumptions they

held and the impact of these.

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Results

During an inductive analysis three themes emerged that focused on the self (see

Appendix Q for a map of themes & subthemes). These included a theme about the personal-

self (identity, personal qualities and how they look physically to others) the emotional-self

(how they experience the self emotionally) and the social-self (how they understand the self

in relation to others). Each theme contained subthemes relating to self. The personal-self

theme emphasised a sense of having unique personal qualities that were valued - ‘I know who

I am, and it is valued’’ and included two sub-themes: ‘People value my unique personal

qualities’ and ‘My appearance is central to how I understand myself’. The theme relating to

the emotional-self - “Looking after how I feel’” focused on being able to manage feelings and

communicate about emotional experiences. It included subthemes: ‘I understand how I am

communicating my feelings, but sometimes I choose not too’ and ‘I can make myself feel

ok’. Finally, the theme which focuses on the social-self - ‘I make friends with others based

on their qualities and values’ captures an understanding of friendship that is chosen and based

on shared values. Themes and commentary are presented below.

1. The personal-self: ‘I know who I am, and it is valued’

Participants had a clear sense of their personal qualities and an understanding that

these were valued and appreciated by others. The theme ‘People value my unique personal

qualities’ focused on this and there was an understanding that the participants felt as if their

peers valued them for the type of person they are. Additionally, participants’ identity clearly

involved a visual and embedded sense of self. The theme ‘My appearance is central to how I

understand myself’ focused on the children’s experience of difference in relation to their

appearance.

1.1: ‘People value my unique personal qualities’

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This theme explores how the children feel about themselves and includes the qualities

that they identified as bringing their peers closer to them. Within this theme the children

describe feeling good about themselves in relation to certain activities, perceiving that other

children admired their qualities. Adebiyi believes his football skills add to his identity and

help to ensure that he is seen as ‘cool’;

Adebiyi: I think they would say that I’m cool or maybe I’m just a bit cool.

Interviewer: you are quite cool… Why do you think you are cool? …

Adebiyi: Because I have defence in football.

Throughout the course of the activity-orientated interviews the children brought up

friendships spontaneously. It appeared the children internalised what they thought their

friends thought about them which helped shape their understanding of themselves. Many of

the activities the children listed as enjoyable were also discussed when thinking about their

friendships. Oria enjoyed and believed she was good at drawing, explaining that her peers

also shared her thoughts;

‘Interviewer: You are a fantastic drawer.

Oria: I know, most of my friends, and people in my class mention it.’

Interestingly, as well as noticing skills that supported them in building friendships

three participants commented on qualities about themselves that they perceived as helping

them make friends. Amobi stated he thought a close friend liked him because of the relational

qualities he possessed; he was able to take care of people:

‘Interviewer: What does Paul like about you?

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Amobi: what he likes about me is I always look after Paul and Paul always looks after

me…I think Paul likes me because I am kind, helpful I’m useable.

Interviewer: What does useable mean?

Amobi: Useable means that I can take care of people.’

Therefore, supporting people through taking care of them, helping them or being friendly

were shown to be valuable qualities for these children and aided them in building and

maintaining peer relationships.

As well as reporting on aspects of themselves that supported them in making friends

the children also noticed situations that influenced how they felt about themselves;

‘Interviewer: Is there anything you don’t like about yourself?

Jaden: When I miss ummm shots in football.

Interviewer: So, when you miss getting a goal in football? How does that make you

feel?

Jaden: ummm. A little bit not that happy.’

This sadness could be related to Jaden perceiving himself as having let the football team

down, or that missing a goal threatens his sense of self and his identity, as when describing

the qualities he likes about himself he explained that he liked that he was ‘good’ at football.

Two other children also identified qualities in their peers which they appeared to

experience as threatening their sense of self, such as other children being more skilful in

games they play. For Jahiem, this led to him wanting to play by himself to protect his view of

himself as successful:

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‘I play with myself because I want to win… When I loose I get sad.’

Amobi, wanted to gain distance from a child that he perceived as more intelligent in order to

protect his positive self-image.

‘He is too clever … I like him sitting far, far away.’

1.2: ‘My appearance is central to how I understand myself’

This theme considers how the children understand how they physically look to others

(self-perception). Commonly the children’s responses related to physical characteristics such

as height, ‘I’m the small one’ or hair style, ‘I have brown hair, he has blonde hair’.

Moreover, the children’s comments introduce the notion of noticing difference in skin colour

and race, for example, Oria commented on the difference in her hair compared to her peers;

‘Her hair is straight, mines puffy’. Additionally, when choosing colouring pencils to draw

themselves, the participants held their skin colour and view of their physical self-concept in

mind. Two children spoke of looking for the pencil that matched their skin;

‘Adebiyi: I think I’m brown, so I’ve got to find a brown one’

‘Oria: It doesn’t have brown, so I just have to use this orange…’

Interesting more than half of the children spoke of, or compared, the colour of their skin or

their country of origin when describing themselves, but when describing these differences,

they did not appear to evaluate them in anyway, merely stating the difference;

‘Paul’s black and I’m white’, ‘I’m mixed race and she’s white’, ‘My dad and sister

are black but my mum, me and my brother are mixed-race’

‘In my old school one of my best friends was Turkish and one was Polish. My best

friend in this school is Polish and I’m mixed race’

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They were simply commenting on the difference they were noticing without appraising.

However, exceptions to the lack of positive or negative appraisals must be noted; not

only does Oria notice the difference in her body shape compared to her sister, but she appears

to be positively appraising it, in favour of how she looks; preferring her own weight to that of

her ‘very skinny’ sister.

‘I like that I’m not too skinny and I’m not too fat. My sister calls me fat, but I look in

the mirror and actually I’m not. My sister, I call her a skinny worm, because she’s

actually very skinny. That’s why she thinks I’m fat, because she’s very skinny.’

As well as noticing difference in relation to skin colour or country of origin Amobi also

commented on looking ‘different’ to the other children who had a disability and appeared to

be comparing himself favourably to these children; making a downward social comparison;

‘Interviewer: Why do they look weird?

Amobi: Because sometimes my friends don’t talks properly, some of my friends

doesn’t look properly, some of my friends doesn’t walk properly, some of my friends

doesn’t talk properly and doesn’t touch properly. Some of my friends, their mums

carry them in a buggy because they can’t walk and they can’t see.’

This downward social comparison was an exception and, for the most part, the children did

not appear to evaluate difference.

Thus, the way the children describe themselves and appear to make sense of themselves

in relation to others, suggests that their sense of self comes from understanding how they

appear to others and how they compare to others.

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2. The emotional-self: ‘Looking after how I feel’

There was a sense of the participants feeling in charge of their emotions and an

understanding that they had a choice in terms of when and how to express them.

2.1: ‘I understand how I am communicating my feelings but sometimes choose not to’

The children are aware that they can convey their feelings to others in a range of

ways.

‘Interviewer: How would I know if you were happy?

Juan: I would be happy. I would make a happy face.

Interviewer: … So, would you have a happy face, and what makes Juan’s face happy?

Juan: I’ve got a smile.’

They demonstrated quite a sophisticated understanding of how others can interpret their

emotions from non-verbal behaviour. They also spoke of the intonation and quality in their

voice changing depending on their mood:

‘Interviewer: What does it sound like when you’re really, really happy?

Oria: I talk very fast.

Interviewer: what about when you’re sad? What’s your voice like then?

Oria: No one can understand me… It’s like droopy and [muffled sounds].’

For some children, there was a sense in which difficult feelings should be hidden from

others. Rather than seeking help when sad or hurt they hid their distress. For Jaden, this

appeared to be related to experiences of not being listened to and a fear of not being believed.

He talked about experiences of being bullied in school and when the interviewer asked if

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teachers knew about this, he replied no. He talked as if he assumed that if he did tell someone

that they wouldn’t believe him. The interviewer pursued this:

‘Interviewer: Would you want to tell anyone about that?

Jaden: No. I don’t like it when people don’t believe me.

Interviewer: … Has that happened before?

Jaden: Mmm

Interviewer: Yeah was that about being bullied or about something else?

Jaden: Something else.

Interviewer: Urr, and how did that make you feel?

Jaden: Angry and sad …’

For some children there was a sense that they would prefer to share positive emotions with

people as opposed to negative emotions. Adebiyi spoke of sharing positive emotions, such as

excitement or happiness with people around him, such as his parents. But when the

interviewer asked him what he would do if he was sad Adebiyi replied:

‘Adebiyi: I’d just lay down in the bed crying

Interviewer: You’d be lying on your bed crying?

Adebiyi: I go do this and just cry

Interviewer: You’d put your head in the pillow, do you?

Adebiyi: Yes

Interviewer: … Who would you tell if you were sad?

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Adebiyi: I’d just told no-one, because really all hard. I told no one.’

There was a sense that the participants had agency over their emotions and an understanding

that they had a choice of when and with whom they would share them with.

2.2: ‘I can make myself feel ok’

All participants showed an understanding of themselves as having an emotional self,

that this was important, and needed to be taken care of. Overall, participants valued their

emotional selves and wanted to take care of themselves and their feelings. They had a range

of strategies for doing this such as seeking support and comfort from others, avoiding

experiences that evoked unpleasant emotions and using self-care strategies such as taking a

nap.

Participants had different ways of seeking the support of others. Amobi described not

liking to be by himself when he was sad “… I like my mum and my dad next to me, and

sleeping next to me…’ Adebiyi agreed with Amobi describing what happened when he

experienced nightmares; he goes into his parent’s room and asks to sleep with them:

‘Adebiyi: I don’t like having nightmares

Interviewer: oh no … What happens when you have a nightmare?

Adebiyi: You wake up in the end.

Interviewer: Do you stay in your bedroom or do you go and speak to someone? What

do you do?

Adebiyi: Sometimes I speak to somebody. Sometimes I try to sleep in Mummy’s room.’

Amobi also used crying to alert friends to his needs:

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‘Paul always takes care of me. He doesn’t even let people touch me. … When

someone hits me, I just cried, then Paul hears it, then Paul comes to me, then he told

the teacher of the person who did that … I always look after Paul and Paul always

looks after me.’

Participants talk explicitly about engaging friends to help when they are experiencing

difficult emotions.

‘Interviewer: Okay, when you feel lonely, what do you do?

Jaden: I find another friend to play with.’

For Jaden there was a sense that instead of explicitly telling people about how he was feeling,

he would seek out friends to support him, this appeared to be a well-used coping strategy,

perhaps as a form of self-soothing.

Participants showed strategies they had to avoid discomfort. Juan finds noise

uncomfortable and extricates himself from the situation.

‘Juan: Yes, it’s hard to concentrate with noises.

Interviewer: It is hard to concentrate with noises, is the buzzing noise annoying you?

Juan: Yes … That buzzing noise is making it hard.

Interviewer: Is it making it hard to think? Would you like to stop today or would you

like to carry on?

Juan: Stop. Can I go to my class room?’

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Participants also talked in detailed ways about how they self-managed difficult emotions.

Sometimes this involved finding a quiet space and a calming activity, or switching off and

going to sleep, to awake feeling replenished.

‘Amobi: When I’m not happy, I just calm down in a quiet space …

Interviewer: If you feel not happy, then you like to be by yourself in a quiet space, do

you?

Amobi: With my dad drawing pictures … ’

He describes drawing slightly rude and irreverent pictures of clowns. The interviewer,

laughing, asks

‘Interviewer: Does that make you feel happier when you draw this picture?

Amobi: I laugh and I feel happier. I laugh and laugh and laugh and laugh and laugh

until I get even happier.

Interviewer: If you were laughing, then, I would know that you were happy, is that

right.

Amobi: Yes.’

Oria describes going to sleep for a nap, both at school and at home to help her manage when

she feels sad.

‘Oria: Just cry my tears. When I’m sad, sometimes, at school, I take naps when I’m

sad. I just cry for a bit, and I fall asleep for one minute and then I wake up, and I’m

okay. At home, I usually just sleep for half an hour then wake up.’

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The participants demonstrate the ability to manage their emotions, self-sooth and seek

support from others.

3: The social-self: ‘I make friends with others based on their qualities and values’

There was a sense the children were actively thinking about friendships; who their

friends would be and what qualities they possessed. However, at least one child, Amobi,

spoke about friendship in a more superficial way, as a category of people. Amobi described

himself as having ‘thousands of friends’ suggesting everyone had the potential to be his

friend; ‘I have other friends, I don’t really know their names yet’. Suggesting he has a limited

understanding of friendships.

For other children friendships were based on shared interests, enjoying each other’s

company and doing things with each other. For example, many children spoke of engaging in

activities with their friends such as playing football, basketball or a computer game. Jaden

explains he enjoys spending time with his best friend because he is fun;

‘Interviewer: Why is he your best friend?

Jaden: Because I just go to his house and have fun with him … That he is fun, and we

have fun when we play’

Other children shared the view that friendships were based on spending time with each other

and enjoying similar activities.

‘Interviewer: Why is she your best friend?

Juan: Because she is six years old, we play rabbits at home and we like it and we play

games on the iPad’

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Jahiem, also spoke of enjoying similar things to his friends but noticed where his interests

differed to his friends as well;

‘Jahiem: He does like playing games with me, but what he doesn’t like he doesn’t like

racing with me’

Oria also shared the view that friendships were based on shared interests and having things in

common.

‘Oria: There are many things with us that are the same. We both like playing games.

We also both like animals … She likes colouring with me, and we have lots of things

in common.’

Interestingly, she was also able to appreciate that although she has shared interests with her

friends, their interests also differed. There was a sense that she was able to appreciate you

may join in an activity that is not one of your interests as it aids in building friendships. She

was able to appreciate one of her friends joined her in playing football as her friend knew she

enjoyed the sport.

‘Oria: I like boyish things, she likes girly things, some of my things are girly but most

of them are boy things. I like football, she does not. She only plays football when I’m

playing.’

As well as thinking about things that helped build friendships the children spoke of qualities

they valued, such as someone being nice.

‘Interviewer: So, they’re your friends because they are calm and nice and because

you play with them?

Adebiyi: Yes … That’s it.’

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Jaden explained that he values friends standing up for him in disagreements;

‘Interviewer: …Is there anything that helps you to feel less sad?

Jaden: When people are being rude, and some people tell them to stop being rude

Interviewer: So, when someone stands up for you?

Jaden: Yeah.’

Amobi also agreed with Jaden that being cared for is important;

‘Amobi: Paul always takes care of me. He doesn’t even let people touch me.

Interviewer: Does he look after you?

Amobi: When someone hits me, I cry, then Paul hears it, then Paul comes to me, then

he tells the teacher of the person who did it.’

While the children were very active in talking about what they enjoyed doing they also

described qualities they sought to avoid in friendships such as ‘being silly’. Thus, it seems

plausible the children are expressing an understanding of friendship as a way of expressing

their values; choosing to reject people who did not align with their sense of propriety to

maintain their sense of integrity.

While Adebiyi was describing a peer’s behaviour, he explained he wasn’t this

person’s friend as they were ‘silly and rude’. He went on to explain he did not like people

who were mean, commenting that mean people make him feel angry. There was sense that

choosing not to be friends with ‘mean’ people was an active choice to manage his emotions.

‘Interviewer: Why don’t you like her?

Adebiyi: Because she’s so mean. … Yes. She doesn’t let me see my books at big read.

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…

Interviewer: Oh no, how does that make you feel?

Adebiyi: Angry.’

Other children (Jaden and Jahiem) also talk about qualities they do not like in people, such as

being rude. While the interviewer is asking Jaden about things he does not like he explained

that getting blamed and people being rude are the two things he dislikes the most. When the

interviewer goes on to question him about how this makes him feel he explains that not only

does he not like people being rude, but that this also causes him to feel lonely;

‘Jaden: When I don’t so something wrong and I get blamed

Interviewer: And how does that make you feel?

Jaden: Sad.

Interviewer: Does it make you feel anything else at all?

Jaden: Angry.

Interviewer: What about people being rude?

Jaden: Lonely.’

The children also spoke of qualities they do not like in people, such as being naughty. As

well naming these qualities they were able to identify the emotion aroused in them.

‘Interviewer: Who’s Tyler?

Jaden: He’s in my class. He always does naughty things at me. He just made me time

out just this once.

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Interviewer: Does that make you feel happy or sad?

Jaden: Sad because I don’t want to get a timeout and I don’t want to miss some of my

play.’

Additionally, two of the children spoke of lying as an undesirable quality in someone;

‘Jaden: Abinna always lies and Taylor always tells of people.

Interviewer: Why don’t you like lying?

Jaden: It’s not good to lie.’

But Amobi went on to identify the negative consequences for himself that could be associated

with one of his peers lying.

‘Interviewer: … Why don’t you like lying?

Amobi: Because some people lie, and I don’t like lying because I could get in trouble

when someone lies’

Therefore, many of the children seemed to understand friendship as something which was

based on qualities and the values of the individuals and were aware of characteristics of

others that they wanted to avoid in their friendships.

Discussion

Much of the research surrounding self-concepts in people with ASC has focused on

adolescents and adults. This study explored how young children with ASC make sense of

themselves. Through exploring self-concepts via activity-orientated semi-structured

interviews, three aspects of the self were identified as being important to how young children

understand themselves; the personal-self (personal qualities and physical appearance), the

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emotional-self (managing and communicating feelings) and the social-self (making sense of

themselves in relation to others). The identification of these aspects of the self may help us

understand how children with ASC develop and the differences and similarities between them

and NT-children. This research highlights these young children with ASC perceive

themselves as sharing many commonalities with their NT-peers; they make sense of

themselves in relation to their peers and for the most part, do not appear to evaluate the

similarities/differences between them. This contrasts with existing literature relating to older

children with ASC and the conclusions that the evaluation of difference contributes to

negative self-concept and low self-esteem. This highlights why it is vital to take a

developmental perspective when looking at self-understanding in ASC. Furthermore, this

study suggests these children have and appreciate friends in terms of enduring characteristics

and values. They also appear to value themselves and want to take care of themselves

emotionally and do not make sense of themselves in relation to their diagnosis of ASC. While

this study has taken an initial look at some younger children’s view of themselves, further

research with children of this age is needed to understand a developmental trajectory of how

self-concepts form and develop in people with ASCs.

Children with ASCs perceive themselves in key ways that are similar to NT-children:

This research suggests that young children with ASCs have self-concepts that include:

personal-self - preferences (what they like and don’t like); psychological traits that capture

their personal qualities (‘I’m kind of friendly’); and, their relationships and who they are as a

social being (developing friendships). This addition to the literature, taken with existing

evidence available from older age children suggests that like NT-children, children with ASC

show development in self-concepts which typically arise later in development; progressing

from listing attributes to descriptions of their unseen qualities such as their values and beliefs

(Damon & Hart., 1988). Moreover, the findings indicate children with ASC, as with NT-

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children, make upward and downward social comparisons. Albeit in a small scale study, this

finding suggests that as early as five-to-six years old, children with ASCs begin to recognise

differences/similarities among themselves and their peers; using social comparison

information to infer where they fall in comparison to peers (Pomerantz, Ruble, Frey, &

Greulich, 1995). Little research has examined how very young children with ASC make

sense of themselves, therefore, this finding may reflect the age of the participants in this

research, as in contrast to most research involving older children with ASC, these young

children do not evaluate these differences. Thus, it is imperative that a developmental

perspective in how children with ASC form self-concepts is adopted.

Moreover, findings suggest that like NT-children, participants are aware of how their

closest friends usually behave in particular situations (Eder, 1990). Furthermore, this study

shows that these children describe their peers using concrete terms - similar to NT-children

(Livesley & Bromley, 1973). Research has shown that young NT-children use words to

describe a peer’s recent or current behaviour. For example, calling someone ‘brave’ would

suggest they have done something to have acted in a ‘brave’ way, rather than using this term

as an explanation of the person’s enduring qualities (Rholes & Ruble, 1984). However, the

children in this study were able to describe other children’s enduring qualities and

characteristics (‘silly’, ‘rude’ or ‘calm’) and used this to infer if they wanted to develop

friendships.

In contrast to current literature, which states that difficulties in social communication

and interactions experienced by children with ASC increases the likelihood of, and

vulnerability to, bullying and social isolation (NAS, 2006; Whitney, Smith & Thompson,

1994), only one child in this study spoke of being bullied. While it is possible that children in

the study were being bullied but chose not to spontaneously raise this during the activity-

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orientated interviews, evidence from the transcripts suggests that these children had formed

friendships which were protective against bullying (Kendrick, Jutengren & Stattin., 2012).

Not knowing your diagnosis of ASC is a protective factor in terms of peer exclusion?

The diagnostic criteria define ASCs by impairment in two core areas; social

communication and interactions, and restricted and/or repetitive patterns of behaviour,

interest or activity (APA, 2013). This diagnosis suggests that those children who receive it

will behave differently to peers, which may lead to exclusion from social groups.

Additionally, how the education system is set up to support children with ASCs may further

exclude these children. Within an educational context, exclusion means not only being

separated from NT-peers, but also being included in a group of others with special

educational needs (Skovlund, 2014). None of the children within this study were aware of

their diagnosis of ASC, which may have been a protective factor against self-fulfilling

prophecies or exclusion within their peer groups. Although the children noted similarities and

differences between themselves and their peers (such as the participant liking ‘boyish’ things

and her friend liking ‘girly’ things or both enjoying an activity) they did not appear to

evaluate these. The children appeared to view themselves as someone to be valued, while also

feeling included in peer relationships; throughout the course of the interviews the children

often brought up friendships spontaneously. Thus, perhaps not being aware of their diagnosis,

and/or not evaluating differences that were noted, served as a protective factor against

exclusion from peer groups (and inclusion into special needs domains), helping the children

to see that they were similar to NT-children in their class.

Previous research (Humphrey & Lewis, 2008) discusses the influence that receiving a

diagnosis may have on a child. The researchers found a divergence between participants who

were aware of their diagnosis and those who weren’t; and between those who described

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themselves and their ASC in negative terms, such as being ‘different’ and those who

embraced the diagnosis. The same research also noted peer relationships influence how

accepting a child is of their diagnosis. A link was found between peers appearing to value the

pupil and the child with ASC accepting their diagnosis, as well as negative views of a

diagnosis from others linking to negative evaluation of the self and the diagnosis of ASC.

Thus, there is no definite evidence about what contributes to these different views of a

diagnosis. Therefore, the findings are relevant to the ongoing discussion surrounding the

pathologizing of ASC and whether it should be viewed within the medical model as a

disorder, or as a variation in personality. Molloy and Vasil (2002) argue that a shift away

from viewing the condition within the medical model is needed to prevent children becoming

defined by their diagnosis. While this may be the case, a cultural change in terms of the

acceptance of difference and neurodiversity in society would support many children with

SEN in accepting their diagnosis.

The participants in this study showed an understanding of themselves as having an

emotional-self that needed to be taken care of and they had a range of strategies for doing this

(seeking support from others, self-soothing, and avoiding experiences which they perceived

as negative). Thus, it is possible that strategies they were using to manage their emotions may

have been seen as self-soothing strategies through one lens (someone unaware of their

diagnosis) or ASCs traits and behaviours through an alternative lens (a teacher who is aware

of the diagnosis). Jones, Huws & Beck’s (2013) research highlights how ASCs are socially

constructed, situated and negotiable entities and one may often hold a juxtaposed view of a

child with ASC as being different to a NT-child, while also being similar. Thus, it is possible

that the view of a child’s behaviour may differ depending on many different factors such as,

how well the child is known, knowledge of NT-child development and of ASC. Thus, we

must question the extent to which it is helpful to organise knowledge of a child around their

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diagnosis, as this may distort our understanding of the child and lead us to make sense of how

a child behaves in terms of deficits, rather than considering the child as a whole (Hodge,

2005).

Appearance and cultural identity

This study found the child’s appearance was central to how they understood

themselves; often describing their height or hair colour. While describing these physical

characteristics (which as previously discussed, is common for NT-children of this age), the

children also spontaneously discussed and compared the colour of their skin to their peers

without appraising it in any way. Butler and Green (2007) propose we define ourselves and

are defined in relation to important people in our lives. Therefore, the values our family holds

and even how our family members look physically can influence our emerging self-concept.

Thus, how we view other people, helps shape our understanding of how we view ourselves.

The participants did not appear to link skin colour and culture to either a positive or negative

appraisal. This could be related to their young age, the school’s culture and environment, or

the ethnic make-up of the borough in which the research was carried out in (48.7% of the

residents in the borough are Non-White British – ONS, 2009). Patterson & Bigler’s, (2006)

research suggests three-five-year olds show a strong inclination to sort people into categories,

and from these categories they prefer to identify with the category they perceive themselves

as belonging too. The current study demonstrates these categories may not just be based on

physical characteristics, but also on emotional traits and characteristics; such as if a child is

thought of as being ‘silly’. It also seems plausible that the child’s environment (such as the

ethnic make-up of the borough and/or school) may have influenced the categories the child

chooses to identify with, as there may be less explicit emphasis on racial difference, thus

impacting on the child’s development of their self-concept. For many people a diagnosis of

ASC is an unclear diagnosis. It is constructed by medical professionals, the media and

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cultural and family discourses (Avdi, Griffin & Brough, 2000; Grinker & Cho, 2013; Huws

& Jones, 2010). Similarly, our self-concepts are constructed through numerous means.

Previous research (Twenge & Crocker, 2002) found in comparison to European Americans,

African American and Hispanic children, who were aware of negative ethnic stereotypes,

expressed lower levels of self-esteem. This suggests that the African American and Hispanic

children understood themselves, in part, through perceptions that society held of them. This

supports Cooley’s (1902) ‘looking-glass self’ theory, which suggests the development of

one’s self-concepts emerges through interpersonal interactions within the context of society.

Nevertheless, one of the children in this study compared himself favourably to other

children (who had a visible disability); making a downward social comparison. Previous

literature (Wills, 1981; Huws & Jones, 2015) suggests these downward social comparisons

heighten subjective well-being and serve as a function to develop self-esteem. Furthermore,

Huws and Jones (2015) also found children with ASC perceived their disability (of ASC) as

different to other disabilities; viewing it as less severe. However, as only one participant

within the study discussed this social comparison, further research that focuses more

specifically on social comparison would be useful to ascertain if other children with ASC

commonly make this type of social comparison.

Clinical Implications

The findings of this research have relevance for clinicians, researchers and educators.

Support when receiving a diagnosis of ASC: This research highlights that young

children with ASC make sense of themselves in relation to their peers, as do NT-children,

but, that they do not evaluate the similarities and differences between themselves and their

peers. This is important as the literature suggests older children with ASC do evaluate these

differences and this contributes to their negative self-concept and low self-esteem. Perhaps

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these differences between the developmental stages are due to a lack of understanding about

their diagnosis as currently a child is assessed for ASC, a diagnosis made, and little further

support is provided for the family (Wallace, Parr & Hardy, 2013). Or, these differences may

simply be related to developmental changes in terms of self-understanding that are common

to all. Thus, it may be possible that parents or caregivers may struggle to explain the

diagnosis to their child and they choose to wait to explain this diagnosis until they feel they

can better understand it themselves, or problems arise at school which warrants an

explanation. Therefore, it may be that increased support for children, parents and educators is

needed when, and after, a child receives a diagnosis of ASC, to aid parties in understanding

the child’s differences in relation to their NT-peers and to support everyone in accepting the

diagnosis.

Being supported by others: Receiving a diagnosis of ASC is crucial to a child’s

education as it can trigger an application for focused educational plans for specialised help

(HO, 2004; Nadesan, 2013). While the Equality Act (2010) strengthens Special Educational

Needs (SEN) pupils’ rights to be educated in mainstream schools and UK Government policy

sets an expectation these children should be included in mainstream schools, the same is not

true for every country. Thus, UK policy impacts research production and how this informs

clinical practice and educational decision making. The current study found children with

ASCs, in a mainstream school, appeared to feel as if they were in charge of their emotions,

that their emotional-self was important and needed to be taken care of. The children had

developed strategies to avoid discomfort and stressful situations; such as noisy environments.

Therefore, people working with these children need to be aware of the strategies they employ,

to support and reinforce to them the utility of the strategies and to model the importance of

taking care of and valuing the self.

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Creating inclusive environments: This research demonstrates that the young children

with ASCs interviewed believed they were valued for the type of person they are, which is

different to the existing literature examining older children’s view of themselves. Therefore,

focusing on creating an inclusive environment, for all children, may be especially important

as when we get older the developmental imperative to ‘fit in’ with peer’s highlights

differences between NT-children and those with ASC. Therefore, educating children about

difference, whether this be SEN, race and culture or personality differences will increase the

understanding of and tolerance of difference, preventing difference as being problematised.

Appraisal of the Study

While the research surrounding self-concepts in adolescents with ASC is growing, the

current study contributes to the limited literature on the development of self-concepts in

younger children with ASC; considering their perspectives. The use of qualitative

methodology is a strength of the study enabling detail and in-depth data to emerge. This is

important as this is an explorative study aiming to understand subtle differences between the

children’s experiences and enabling the researcher to study the data in more detail to glean

insights into how children may make sense of themselves in relation to their peers.

Employing activity-orientated semi-structured interviews allowed the researcher to utilise

broad open questions as ‘launch pads’ for discussion while ensuring that all of the interviews

contained the same topics providing each participant the scope to discuss all aspects relevant

to the research question. The inductive reflective interview style required the interviewer to

encourage the children to elaborate on their responses allowing for nuances between the

participants to emerge, which is evident in the reporting of cases of exception in the results

section. This research resonates with previous research in showing the utility and value of

employing activity-orientated semi-structured interviews. Winestone, Huntington, Goldsack,

Kyrou & Millward, (2014) found young people were better able to articulate themselves

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when activity-orientated semi-structured interviews were employed, allowing the participants

to more fully present their views.

Moreover, Butler and Green (2007) state it is important to remember when

conducting activity-orientated interviews we are interviewing children in the context of their

wider circumstances. Thus, the researcher’s position, and assumptions of these circumstances

and context may have impacted the way data was collected and analysed. Given this, the

researcher adhered to Yardley’s (2000) principles; crosschecking transcripts in supervision

and supporting ongoing reflexivity by keeping a research journal.

In this study effort was put into interviewing an homogenous sample of participants

by conducting the research in one borough of North London, limiting the age of the

participants, and excluding participants who had additional diagnoses. Although it was not

part of the recruitment criteria, none of the children involved in the study were aware of their

own diagnosis. This could have impacted on the findings, as knowing their diagnosis of ASC

may have impacted their own perception of themselves and their behaviour. The findings are

discussed with caution and are not transferable to other children who have been diagnosed

with ASC without further research being conducted.

Suggestions for Further Research

Previous research has shown that self-concepts are likely to be delayed or influenced

by many factors such as culture (Vinden & Astington, 2000) and attachment (Verschueren,

Marcoen & Schoefs, 1966) and at times development may be hindered by cultures that lack

the social support for their emergence (Viden & Astington, 2000). They argue that in Peru,

references to mental states which make up part of our self-concepts were rarely spoken of and

were largely absent from their culture, demonstrating that language can influence the

emergence of self-concepts. Play-based semi structured interviews have the potential to help

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us explore the experiences of children from other cultures to build on our understanding of

self-concept formation.

A key finding of this study is these children with ASC have developed self-concepts

similarly to NT-children. However, while there is a vast amount of research surrounding

early and adolescent’s development for both NT-children and children with ASC, there is

little research surrounding child development in middle childhood. Research suggests that by

eight years of age other people’s evaluations of NT-children reflected the child’s appraisal of

themselves (Marsh, Craven & Debus, 1998). This suggests that the formation of self-concepts

in NT-children is linked to how they are perceived from others. Further exploration of how

children with ASC in middle childhood develop their self-concept would therefore be useful.

As previously discussed, NT-children compare themselves socially to their peers. The

findings suggest children with ASC also use social comparison to make sense of themselves.

Pomerantz et al., (1995) suggest this comparison increases while becoming more subtle with

age, in NT-children. Thus, further research is warranted in middle childhood for children with

ASC to explore their development, particularly in Western cultures where social comparisons

are more likely as competition and individual accomplishment are valued highly within the

education system and our society.

Further exploration surrounding gender differences in forming self-concepts is

warranted. This study primarily focuses on the experience of young males with ASC as only

one female was recruited. Interestingly, male participants noted where their interests differed

to friends, whereas there was a sense that Oria was able to appreciate that one of her friends

joined her in playing football as her friend knew she enjoyed the sport. This suggests she was

aware that joining an activity that is not one of your interests may aid in building friendships.

It is unclear whether this portrays genders differences, or an example of individual

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differences and the participant happened to be female. Therefore, further exploration would

aid understanding gender differences in the formation of self-concepts.

Finally, this study suggests these children did not make sense of themselves in

relation to their diagnosis of ASC - indeed all recruited participants had not been informed of

their diagnosis. Future empirical research could examine how knowledge of a diagnosis of

ASC in younger children, impacts on the children’s perception of themselves.

Conclusion

This study explored how young children with ASC viewed themselves and make

sense of their self-concept. In addressing the research question, this study proposed that

children with ASCs self-concepts include aspects of their personal-self, their emotional-self

and their social-self, tentatively suggesting that their development of self-concepts is similar

to NT-children. Further research is needed to explore factors which may affect the

development of self-concepts, such as culture, gender and attachment style in children with

ASCs.

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Appendices Content Page

Appendix A: Autism Journal – Guidance for submissions

Appendix B: Example of letter sent out via school for recruitment

Appendix C: Parent Information Sheet

Appendix D: Parent Consent Form

Appendix E: Social Communication Questionnaire

Appendix F: Participant Information Sheet

Appendix G: Participant Assent Form

Appendix H: Information surrounding the Social Communication Questionnaire

Appendix I: Further information surrounding the Interview Schedule

Appendix J: Interview Schedule

Appendix K: Faculty of Health and Medical Sciences Favourable Ethics

Opinion Certificate

Appendix L: Risk Assessment

Appendix M: Confidentiality agreement between researcher and

transcription company

Appendix N: Worked examples of analysis process

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Appendix O: Details of the analysis process

Appendix P: Reflective Diary

Appendix Q: Maps of themes and subthemes

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Appendices


This Journal is a member of the Committee on Publication Ethics

Please read the guidelines below then visit the Journal’s submission site http://mc.manuscriptcentral.com/autism to upload your manuscript. Please note that manuscripts not conforming to these guidelines may be returned.

Only manuscripts of sufficient quality that meet the aims and scope of Autism will be reviewed.

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As part of the submission process you will be required to warrant that you are submitting your original work, that you have the rights in the work, that you are submitting the work for first publication in the Journal and that it is not being considered for publication elsewhere and has not already been published elsewhere, and that you have obtained and can supply all necessary permissions for the reproduction of any copyright works not owned by you.

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1.2 Article Types

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4.4 Terminology

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Autism has researched and compiled their own Terminology Guidelines which all authors should follow.

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Authors seeking assistance with English language editing, translation, or figure and manuscript formatting to fit the journal’s specifications should consider using SAGE Language Services. Visit SAGE Language Services on our Journal Author Gateway for further information.

5. Submitting your manuscript

Autism is hosted on SAGE Track, a web based online submission and peer review system powered by ScholarOne™ Manuscripts. Visit http://mc.manuscriptcentral.com/autism to login and submit your article online.

IMPORTANT: Please check whether you already have an account in the system before trying to create a new one. If you have reviewed or authored for the journal in the past year it is likely that you will have had an account created. For further guidance on submitting your manuscript online please visit ScholarOne Online Help.

5.1 ORCID

As part of our commitment to ensuring an ethical, transparent and fair peer review process SAGE is a supporting member of ORCID, the Open Researcher and Contributor ID. ORCID provides a persistent digital identifier that distinguishes researchers from every other researcher and, through integration in key research workflows such as manuscript and grant submission, supports automated linkages between researchers and their professional activities ensuring that their work is recognised.

We encourage all authors to add their ORCIDs to their SAGE Track accounts and include their ORCIDs as part of the submission process. If you don’t already have one you can create one here.

5.2 Information required for completing your submission

You will be asked to provide contact details and academic affiliations for all co-authors via the submission system and identify who is to be the corresponding author. These details must match what appears on your manuscript. At this stage please ensure you have included all the required statements and declarations and uploaded any additional supplementary files (including reporting guidelines where relevant).

5.3 Permissions

Please also ensure that you have obtained any necessary permission from copyright holders for reproducing any illustrations, tables, figures or lengthy quotations previously published elsewhere. For further information including guidance on fair dealing for criticism and review, please see the Copyright and Permissions page on the SAGE Author Gateway

6. On acceptance and publication

6.1 Lay Abstracts

Upon acceptance of your article you will be required to submit a lay abstract of your article to the Social Media Editor, Laura Crane ([email protected]). Lay abstracts are brief (max 250 words) descriptions of the paper that are easily understandable. These abstracts will be made available to researchers and clinicians, as well as the general public (including individuals with autism spectrum disorders and their families). These abstracts should avoid both technical terminology and the reporting of statistics. Examples of lay abstracts are provided in recent issues of the journal.

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6.2 SAGE Production

Your SAGE Production Editor will keep you informed as to your article’s progress throughout the production process. Proofs will be sent by PDF to the corresponding author and should be returned promptly. Authors are reminded to check their proofs carefully to confirm that all author information, including names, affiliations, sequence and contact details are correct, and that Funding and Conflict of Interest statements, if any, are accurate. Please note that if there are any changes to the author list at this stage all authors will be required to complete and sign a form authorising the change.

6.3 Online First publication

Online First allows final articles (completed and approved articles awaiting assignment to a future issue) to be published online prior to their inclusion in a journal issue, which significantly reduces the lead time between submission and publication. Visit the SAGE Journals help page for more details, including how to cite Online First articles.

6.4 Access to your published article

SAGE provides authors with online access to their final article.

6.5 Promoting your article

Publication is not the end of the process! You can help disseminate your paper and ensure it is as widely read and cited as possible. The SAGE Author Gateway has numerous resources to help you promote your work. Visit the Promote Your Article page on the Gateway for tips and advice. In addition, SAGE is partnered with Kudos, a free service that allows authors to explain, enrich, share, and measure the impact of their article. Find out how to maximise your article’s impact with Kudos.

7. Further information

Any correspondence, queries or additional requests for information on the manuscript submission process should be sent to the Autism editorial office as follows:

Katie MarasDepartment of PsychologyUniversity of Bath, UKEmail: [email protected]

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Appendix B: Example of letter sent out via school for recruitment

SCHOOL LOGO/SCHOOL HEADED PAPER Dear Parent or Guardian, Our school has been selected to take part in a new piece of research that is being carried out by the University of Surrey by Rebekah Easton, a Trainee Clinical Psychologist. She is hoping to understand more about how our children see themselves.

She would like to invite you to assist in this project by agreeing for your child to take part in two short interviews. Please be assured that any information provided will be treated in strictest confidence and you nor your child will be individually identifiable in the results of the research, the report or any publications. You child is, of course, free to choose not to take part and stop their participation at any time or to decline to answer particular questions.

Attached to this letter are two letters from Rebekah which explain the research in more detail. She hopes that this will be an enjoyable task for your child which will add to valuable research. If you are happy for your child to be involved, please sign the consent form attached and return it to (NAME). If you have any questions about the research you can contact (NAME) or speak directly to the researcher, Rebekah, by emailing her at [email protected].

Thank you for your assistance in this exciting opportunity for our school. Yours sincerely,

HEADTEACHER/SENCO.

FORMS TO ATTACH: Parent information sheet Parental consent form Social Communication Questionnaire

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Appendix C: Parent Information Sheet

Version 1

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Appendix D: Parental Consent FormVersion 1

Parental Consent Form

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Appendix E: Social Communication Questionnaire – Lifetime version

< removed for copy right reasons >

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Appendix F: Participant information

Participant Information Version 1

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Appendix G: Participant Assent form

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Appendix H: Further information surrounding the Social Communication Questionnaire

The SCQ Life time version (Rutter, Bailey & Lord, 2003) is widely used by clinicians to screen for ASC and

researchers to establish eligibility for inclusion into research studies. It is 40-item parent report measure, which

is completed by a primary caregiver who is familiar with both the developmental history and the child’s current

behaviour. It was used in this study to independently support each child’s formal diagnosis of ASC. Parents

chose to complete the SCQ independently, or with the researcher over the phone or in person. Four of the six

parents chose to complete the SCQ with the researcher. The Lifetime version yields a total score that is

interpreted with reference to cut-off scores; scores above the cut-off of 15 suggest the individual is likely to

have ASC, all of the participant in this study scored above the cut-off score of 15. The SCQ has been found to

have a good discriminant validity and utility as an efficient screener for at-risk groups of school-age children.

Moreover, it is useful for comparing ASC to other diagnoses as it has been found to have good sensitivity (.96)

and specificity (.80) in a large population of children with ASC and other developmental disorders. The positive

predictive value was .93 (Rutter, Bailey & Lord, 2003; Wilkinson, 2011).

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Appendix I – Further information regarding the Interview Schedule

First interview: The first interview focused on the participant’s self-perception and included questions

surrounding the participant’s likes and dislikes, what they normally do when they are happy and about a

favourite object. The interview finished with them drawing a picture of themselves which enabled the researcher

to ask about what the participant liked and disliked about themselves.

Second interview: The second interview focused on the participant’s perception of themselves in

relation to their peers. This included questions about their class; who their friends are and what makes them their

friends, who they sit close too, if there are people in their class that they don’t like and who do they play with at

break time. The interview also included questions about their best friends; what they like doing with their

friends; what their friends would say they like about the participant; and also what makes people not their

friends. The participants were asked to either draw a picture of themselves and their friends or select Playmobil

characters to represent themselves and their friends and explain their drawing or why they chose the characters

they chose. The interview finished with the participants drawing a picture of themselves from the perspective of

their best friend with the instruction “I would like you to draw a picture of yourself that you think is how your

best friend would draw you”. This was used to facilitate discussions surrounding what they think their friends

like and dislike about them.

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Appendix K: Faculty of Health and Medical Sciences Favourable Ethics Opinion Certificate

Faculty of Health and Medical SciencesEthics Committee

Chair’s Action

Proposal Ref: 1315-PSY-17

Name of Student/Trainee: REBEKAH EASTON

Title of Project: How do young children on the autistic spectrum make sense of themselves?

Supervisor: Dr Emma Williams

Date of submission: 4th October 2017

Date of confirmation email: 21st November 2017

The above Research Project has been submitted to the Faculty of Health and Medical Sciences Ethics Committee and has received a favourable ethical opinion with minor conditions. Confirmation has been received that the conditions stipulated after ethical review have now been addressed and compliance with these conditions have been documented.

The final list of revised documents reviewed by the Committee is as follows:

Ethics Application FormDetailed Protocol for the projectParticipant Information sheetConsent FormRisk Assessment (If appropriate)Insurance Documentation (If appropriate)

All documentation from this project should be retained by the student/trainee in case they are notified and asked to submit their dissertation for an audit.

Signed and Dated: 21/11/2017

Professor Bertram Opitz

Co-Chair, Ethics Committee

Please note: If there are any significant changes to your proposal which require further scrutiny, please contact the Faculty of Health and Medical Sciences Ethics Committee before proceeding with your Project.

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Appendix L: Risk Assessment

Consideration Person at Risk Scale of Risk Existing Protocols

Additional Mechanisms

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?

Right to choice and self-determination

Participant Medium Participants are young children (age 5-7). To mitigate this risk parents will give informed consent and participants will be asked to assent to participation.

The interviews will be undertaken by an experienced clinician who will ensure the child gives ongoing assent.

Deletion of data from electronic equipment

Participant Low Interviews will be recorded on a Dictaphone memory device. After transcription and anonymisation the recordings will be deleted.

No

Data storage Participant Low An encrypted USB stick will be used, and transcripts will be saved in an anonymised form. Paper consent forms will be scanned, shredded and saved separately from the

No

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interview data.

Risk of attack or allegation by participant/lone working

Researcher Low Interviews will take place in a room within the school. Staff will be nearby and within hearing. A member of school staff will be aware of where the research is and on standby if need be. If needed interviews will be done with a known adult present.

No

Anonymity at all stages of data collection/ confidentiality

Participant Low Avoid sharing any of the information/data given by the participant during the interview and ensure that the information/data is anonymised. This information will be highlighted to the participant and their parent in the information sheet and in person verbally.

No

Parental concern (before and during the process)

Parent Low-Medium (parent dependent)

Part of the parental consent is provision of information sheets. There are also contact details for myself if they are unsure of any part of the process (before or during) and they would like to talk to the researcher or

Meeting with the parents and providing a personal explanation to them.

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ask any questions.

Sensitivity around the child’s knowledge of their autism diagnosis

Participant/Parent or carer Dependent on the situation; low – medium

As part of the consent from there are boxes to tick to indicate whether the child is aware of their diagnosis. The research will check this information with the school staff and the participants teacher.

No

A feeling of distress (before and during the interview)

Participant Low - medium Giving the participant information via information sheets and encouraging their parents to discuss this with them before the interviews take place. Discussions with the school staff before, so that they are fully aware of the process and can support the child.

Ensuring that a trusted member of staff is nearby so that if the participant becomes distressed they will be able to support the child. Ensure that staff are aware of the nature and content of the interview and process.

The interviews will be undertaken by an experienced clinician who will ensure that the child feels comfortable in the interview and does not look visible distressed.

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Having a discussion with school staff to find out particular things that the child finds helpful to calm them down if need be.

Recall of an upsetting situation or emotion during the interview

Participant Low – medium Avoid pushing for answers to questions that may seem upsetting to a participant.

Ensure that a member of school staff understands the process and that they are available if needed by the child.

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Appendix M: Confidentiality agreement between researcher and transcription company

Confidentiality Agreement for the Transcription of Qualitative Data

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Appendix N: Worked examples of analysis process

Participant 4

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Participant 1

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Appendix O: Details of the analysis process

The following steps were taken:

Each manuscript was printed on a different colour paper to allow the researcher to easily identify which data set

belonged to which participant.

1) Familiarisation with the data set: the researcher listened to the recording and read the transcripts

repeatedly. The researcher noted any initial thoughts that arose during this process on the transcripts.

2) Coding: the researcher highlighted all data that was related to the research question and/or was of

interest (Braun & Clark, 2006). For each ‘chunk’ of data the researcher produced a code (a few words)

that described the nature of the content of the ‘chunk’ of data. More than one code was applied to

chunks of data if the researcher felt that the ‘chunk’ of data related to numerous codes. The researcher

re-examined the data set and grouped data into codes. The title of the code was reviewed repeatedly as

the process evolved to ensure it accurately captured the content of the coded data. During this process

data was moved as the code developed. Furthermore, chunks of data continued to be coded in multiple

ways, when this occurred the chunk of data was placed in multiple code piles.

3) Searching for themes: codes were individually examined and in relation to other codes in order to

identify relationships between them and how they may combine to form a theme. Several thematic

maps were drawn to aid this process.

4) Reviewing themes: Once the sub themes were generated all chunks of data were re-read to ensure that

there was a coherent pattern across the extracts. Each transcript was then re-examined to ensure that the

themes fit with the data and that all data that relates to each theme had been included in the initial

coding process. Not all codes were included in the final list of subthemes. During this stage data

continued to be recoded, moved from one code to another and the name and content of themes also

continued to change and evolve.

5) Defining and naming themes: During this stage the data from each theme was examined to create a

name which satisfactorily captured the content of each theme. Furthermore, the content of each theme

was examined to construct a coherent description of each theme individually and how it relates to other

themes and the data set as a whole.

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Appendix P: Reflective Diary - Completed before the first interview.

Thoughts in the lead up to the interview:

I am noticing a wide range of emotions such as anticipation and fear. I am trying to understand what is driving these emotions and what the possible impact of this may be on my first interview. I think that my feelings of anticipation are easier to make sense of; I have been planning this study for some time now and I am excited that I will be able to start interviewing the participants and collect data. The study is beginning to feel more ‘real’. I also wonder if my feeling of anticipation is also linked to a feeling of excitement, that this study is interviewing children from different cultures and ethnicities, when compared previous research (that I have read or seen thus far). I wonder if I have created an expectation within myself, or a pressure, to ‘discover’ something new.

I am currently on my child and adolescent placement, which is in a learning disabilities service. I think that this placement may have contributed to some of the anxiety or fear that I am experiencing surrounding my first interview. A lot of the children that I am currently working with have a diagnosis of Autism, most of them at the severe end of the spectrum. A lot of children are non-verbal and attending special education needs schools and are in small classes of five children and three adults. This has prompted me to start thinking about Autism in a broader sense, I have been thinking about the children, who have severe ASC, their quality of life and how much study would differ if they were to be included in it, or if my study would even be possible. Much of my previous experience with people with ASC has been with high functioning children or adults, in a therapeutic setting, or in a nursery setting. So, it is interesting for me to think of carrying out research with children on the more severe end of the spectrum.

Potential impact on these emotions on the interaction with my participant and the interview process:

Feeling motivated to ‘discover’ something may mean that I am being driven by this and led by my thoughts, rather than trying to facilitate an activity-based semi-structured interview that is guided by the questions and what the children say.

Actions to manage this:

It’s important for me to remember that with exploratory qualitative research I’m not testing hypotheses about what I think I will find, and as such, there is no such thing as ‘no results. The data will reveal something about how the participants think and experience the world and I need to remain open to finding whatever comes up.

Reflection on the first interview:

I feel very glad that the first part of the first interview is done. The child appeared to enjoy it, and it didn’t feel like ‘hard work’. He engaged well with the questions and appeared to enjoy talking about himself. I think we all do? I think the questions at the beginning, asking about what the children like/don’t like doing are well placed as it’s something easy for the child to talk about and helps me get to know them and build up a relationship with them. At the end of the interview I asked the child if they would be happy to meet with me again and he replied without appearing to hesitate, which made me feel good, and that he had enjoyed it. I think that my light-hearted nature and being able to laugh with him when he told some jokes helped to establish a good rapport with him.

I am slightly worried that the answers he gave to my questions were very short. I tried my best to support him to elaborate on what he was talking about, but I’m not sure how successful this was.

Actions:

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o To discuss my concerns surrounding the child’s short replies to questions in my next supervision session.

o To continue to adopt a light-hearted approach that used in this interview in future interviews.o Continue to keep reflective log.

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Appendix Q: Maps of themes and subthemes

Example of first map of themes and subthemes

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Example of a more developed map of themes and subthemes

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Final map of themes and subthemes

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Literature Review

A review of the literature examining the self-concept and identity of children and adolescents with Autistic Spectrum Conditions

Word Count: 7,977

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Statement of Journal of Choice

This literature review is written with the view of submitting to a peer-reviewed journal. The

journal of choice for this review is Autism. This journal has an impact factor of 3.91 and is

published eight times a year by Sage Publications in association with the National Autistic

Society. It accepts systematic literature reviews relating to Autism.

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Abstract

Introduction: There is huge variation across both individuals’ experience of Autism Spectrum

Conditions (ASC) and how people with this diagnosis understand their identity and self-

concept. Only recently have researchers begun to study the ways in which people with ASC

understand themselves in terms of identity and self-concept. Within this, there is a developing

interest but still limited research on children and adolescents.

Objectives: The current literature review aims to review the existing qualitative literature

surrounding self-concepts and identity of children and adolescents who have been diagnosed

with an ASC.

Method: A systematic review of the literature was carried out. Eleven published journal

articles from PsychoINFO, Web of Science, MEDLINE, Cochrane, British Educational

Index, Child Development and Adolescent Studies were sourced and reviewed. Tabulation

was used to summarise the methodology and findings.

Results: The main themes in this literature include: experiences and perceptions of diagnosis,

comparison to others, friendship and own self-perception. Within the literature, there is a

focus on the experiences of older males from Western cultures who are verbal and

cognitively able.

Conclusions: A limited range of methods have been used in data collection and there is a lack

of transparency in the reporting of the analytic process. Implications and future

recommendations are also discussed. Confronting these will allow further research to better

inform educational policy and clinical practice.

Key Words: Autism, Self-concept, Identity, Children, Adolescence

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Introduction

The development of self-concepts has long captured the interest of

psychologists. Self-concept is a multi-layered construct which comprises several dimensions

that characterise how a person views themselves (Plesa-Skwerer, Sullivan, Joffre, Tager-

Flusberg, 2004). While it is commonly thought that the most dynamic developments in self-

concept formation take place during adolescence, research’s generally agree that the process

of constructing self-concepts is lifelong in nature and certainly begins in infancy (for an

overview see Crocetti, 2018). For example, while identity formation is a dynamic process

whereby someone may form and revise their identity repeatedly; children begin to develop a

sense of self-identity at a young age but revise and reconsider their identifications at various

points. Given the changes involved in adolescents, it is to be expected that identification from

early childhood may be reconsidered during this time. It is known that there is variation

between individuals in terms of how this process unfolds. For example, Crocetti (2018)

suggests that long-term development of identity can vary from male to female and also for

different groups of adolescents, for example adolescents who report more anxiety were found

to revise their identity more frequently, showing more uncertainty in identity formation.

However, only recently have researchers begun to study how people with developmental

disorders, such as Autism Spectrum Conditions (ASC), conceptualise themselves and while

the development of self-identity for this group would take place through the lifespan most

research has focused on earlier life – as this is the point in which developmental and

neurological differences come to light.

Receiving a diagnosis of ASC happens alongside a drive by parents and others to find

appropriate support for these children. Gaining a diagnosis of ASC can be central to receiving

additional support within a school environment and can be useful in advancing support for

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children and young people. Receiving a diagnosis requires adapting to and assimilating a new

identification, and must be addressed in some way in the self-concept. This accommodation

and assimilation are not single events as the meaning of ASC to identity and sense of self will

carry over time and context and may have to be revisited numerous times as the young

person’s identity develops. Therefore, it is important to consider a developmental perspective

in the understanding of an individual’s self-concept.

ASC is an umbrella term for individuals who have a condition which is characterised

by communication and social interaction difficulties, restricted interests and repetitive

behaviours that have been present since childhood (American Psychiatric Association (APA),

2013). The effects of an ASC and symptom severity are different in each person. ASC tends

to be diagnosed in childhood, although increasingly it is also being identified in adults. It is

three-to-four times more common in boys, compared to girls (APA, 2013) with

approximately 1% of children within the United Kingdom (UK) meeting the diagnostic

criteria (Baron-Cohen, Scott, Allison, Williams, Bolton, Matthews, Brayne, 2009). According

to more recent research, the rate of diagnosis has increased over time (Taylor, Jick &

MacLaughlin, 2013). This may be due to a greater emphasis on the importance of early

identification as some researchers have suggested that outcomes for children with ASC can

be improved with early diagnosis and intervention (Dawson, Rogers, Munson, Smith, Winter,

Greenson et al., 2010).

However, diagnosing ASC involves numerous professionals and can be challenging.

National Institute for Health and Care Excellence (NICE) Guidance (2011) states that a

developmental history must be collected focusing on features consistent with ASC, alongside

a medical history, and an assessment for other conditions that may exist (such as

neurodevelopmental disorders or mental and behavioural disorders). In addition to this,

assessments are needed to construct a profile of the child to see if a diagnosis of ASC best

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explains that child’s presentation. As well as the diagnostic process being complex and

labour-intensive, research has suggested that ASC may be under diagnosed in certain groups

of people; girls (perhaps due to differences in presentation between the genders; Rivet &

Matson, 2011) and children from African-American and Hispanic cultures (possibly as

examples of health disparities or gaps in the quality of health care across all racial and ethnic

groups; Valicenti-McDermott, Hottinger, Seijo, & Shulman 2012).

Consequence of an ASC diagnosis

Due to the current policy context within the UK much of the current literature

surrounding children with ASC is linked to their experience of school, as for many children,

receiving a diagnosis of ASC can be central to receiving additional support within the

classroom and at school in general. Currently, UK Government policy sets an expectation

that children with Special Educational Needs (SEN) should be included in mainstream

schools, unless there are compelling reasons not to (DfEE, 1997). Additionally, the Equality

Act (2010) strengthens SEN pupils’ rights to be educated in mainstream schools. The

diagnosis of ASC can act as a prompt for the development of focused educational plans for

specialised help to assist students to achieve academically (Ho, 2004; Nadesan, 2013).

However, this may not be true for every country, and within the UK educational policy has

impacted the way in which research is carried out and literature is developed. This needs to

be born in mind when looking across the broader literature to include countries where UK

policy and educational practice is not mirrored.

While a diagnosis of ASC can be useful in advancing support for children, the

stereotypes associated with the diagnosis may act as a disadvantage. Ho (2004) suggests the

‘difference’ associated with a diagnosis, may result in all children with that diagnosis being

treated similarly, despite having individual strengths, interests and achievements. As a result,

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the diagnostic label may become more significant in terms of how others perceive and

interact with the child (Hodge, 2005). For example, within the school setting, children and

adolescents may be named by their diagnosis in discussions; ‘the autistic child in year five’,

giving more meaning to the child’s diagnosis than the child’s individual personality.

Goffman’s (1963) theory of social stigma, offers some explanatory value, suggesting labels

have the power to ‘spoil’ the identity of the individual. In this case the diagnosis of ASC may

override the other features of the child’s identity. This promotes the idea that having different

needs from other children means having abnormal needs (Ho, 2004). With increasing rates of

diagnosis in childhood over recent years (Taylor, Jick & MacLaughlin, 2013) it is important

to consider the potential impact of this label on young people’s self-concept, both inside and

outside of the classroom. Not only will the label affect how others respond to the child, they

may also internalise the stigmatised ASC identity.

Self-concepts in individuals with ASC

The term self-concept has different meanings in different contexts (Shakespeare,

1996). The idea of self-concept represents a complex construct containing several dimensions

that define a person’s understanding of their individuality. These usually include;

psychological and cognitive features, physical qualities, as well as social and interpersonal

dimensions that ensure a connection to society, integration into a social-cultural work and

particularly distinction from others. Furthermore, Cooley (1902) and Mead (1934) propose

how we view ourselves is also a reflection of how others view us.

Although our self-concept develops and changes over time, Jackson, Skirro and Hare

(2012) suggest that at all ages there is some understanding of our physical, active, social and

psychological selves. It has been suggested that impaired social cognitive skills characteristic

of ASC (Lind & Bowler, 2007) impair the development of self in ASC. However, such

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research has primarily focused on theory of mind which is defined as the ability to understand

the mental states of others and oneself (Premack & Woodruff, 1978) rather than on self-

concepts.

Whilst there is a multitude of research demonstrating that some individuals diagnosed

with ASC have a reduced ability to understand the mental states of others (for example, Hugh

& Leekam, 2004), there has been relatively little research (with notable exception King,

Williams & Gleeson, 2017) surrounding the ability and extent to which people with ASC

understand their own mental states and self-concepts. Research in this area suggests children

with ASC view themselves as less competent when compared to neurotypical peers in social

and physical areas, but not in terms of cognition (Capps et al., 1995). Further research in this

area has mainly focused on academic self-perceptions, how children perceive their academic

achievement (Plesa-Skwerer, et al., 2004) rather than the development of their self-concept.

Zahavi and Parnas, (2003) argue that research surrounding the extent to which people with

ASC understand their own self-concept is more contentious, as methodologies which are

usually employed prevent in-depth interpretation of the data (this is further discussed in the

‘methodology of existing research surrounding self-concept’ section).

Developmental literature surrounding self-concepts

As there are marked changes in development from childhood through to adolescence

and then adulthood, it is important to consider a developmental perspective in the

understanding of an individuals self-concept. Although there are differing opinions

surrounding the way in which psychological and physical development occur over the

lifespan, many developmental theories categorise child development into separate stages.

Damon and Hart (1982, 1988) describe that from two years old children begin to attribute

stable characteristics to themselves, suggesting they are beginning to define their self-

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concept. Lewis (1990) suggests self-understanding involves an awareness of one’s own

existence and individuality as well as significant groups to which one belongs (for example,

gender) that shape one’s identity; you are able to distinguish yourself from others through the

use of these categories. Despite previous research evidencing self-awareness and identity

formation in individual accounts of those with ASC, there is a relatively small body of

research in relation to self-perception in young people with ASC when compared to research

surrounding theory of mind and cognitive development.

Additionally, Erikson’s Stages of Psychosocial Development (1956, discussed in

Erikson, 1994) informs our understanding of how children’s social-self plays a role in the

development of their own self-concept. Stage four of Erikson’s theory; ‘Industry vs

Inferiority’, which typically occurs between the ages five – thirteen, suggests as children

mature, their level of self-awareness increases. It is during this stage that Erikson theorises a

child’s peers will play a larger role in their development; wanting to gain approval from peers

becoming a source of the child’s self-esteem. Therefore, in line with Kohlberg’s Theory of

Moral Judgement (as discussed in Gibbs, 1979), children and adolescents begin to understand

social comparisons; both upward comparisons to high social groups and downward

comparisons to low social groups. Such social comparisons are seen as important during

adolescence when individuals are engaged in forming and changing their identity (Williams,

Gleeson & Jones, 2017; Van Lange, Kruglanski & Higgins, 2011), perhaps explaining why

according to Erikson, typically developing children are often competitive at this time.

However, previous research has found social comparison processes that people with ASC

made against neurotypical peers were associated with development of poor-quality

friendships and feelings of isolation (Bauminger & Kasari, 2000).

Methodology of existing research surrounding self-concepts

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Previous research into ASC has mainly focused on quantitative methodologies

(Williams et al., 2017). Much of the existing literature surrounding the development of self-

concepts within children and adolescents has utilised Damon and Harts Self-Understanding

Interview (1988) which is based on their model of self-understanding (1982, 1988). This

model provides a foundation for our understanding of how the self-concept develops in

typical children. Alongside this model, Damon and Hart (1988) developed the self-

understanding interview which is commonly used in existing research. Although it is well

established as an approach, it is deductive in nature and provides a narrow interpretation of

self-concepts.

The self-understanding interview investigates the nature of the participants’

awareness of self, definition of self, comparison of self with others and sources of pride and

shame. They identify four elements of the object self: physical, active, social and

psychological and four elements of the subject self: self-continuity, distinctness from others,

volition and self-reflection. The interviews are structured with a set of questions presented in

a fixed order followed by probes, and are then scored by first chunking the speech, deciding

what section of the manual the chunk belongs within, and then matching the chunk to a

developmental level within that section. The structure of Damon and Harts (1988) self-

understanding interview leaves little space for ‘unanticipated discoveries’ (Plesa-Skwerer, et

al., 2004) and the inflexibility of the methodology may prevent new discoveries from being

made. Moreover, this approach is deductive in nature, whereby the conception of the self is

shaped by the researcher’s prior conceptions. Thus, limiting the discovery of new findings,

preventing us from further understanding the development of self-concepts.

With much of the previous research having utilised quantitative methodologies or the

Damon and Hart Self Understanding Interview, little qualitative research has been conducted.

Therefore, it makes sense to explore what qualitative research can offer, as suggested by

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Williams et al., (2017) in their qualitative metasynthesis. Bolte (2014) suggests qualitative

research may be underutilised in autism research because few researchers are well trained in

this approach, resulting in the poor scientific quality of some qualitative studies, and there is

a perceived lack of need for it. Additionally, Lundy and McEvoy (2012) support the

argument for child-centred research methods that involve and support children to form and

express their perspective. Therefore, while previous methodologies have furthered our

knowledge in this field, they may have in part prevented researchers from fully understanding

children’s experiences; qualitative research methods allow us to do this. Therefore,

qualitative research is well placed to aid investigations of children’s and adolescents’ self-

concept as it focuses on understanding the processes in situations while also making meaning

of an individual’s situation.

Aims: There has been a recent upsurge in qualitative papers looking at how children with

ASC define their self-concept, for example Williams and colleagues (2017) systematic

review and metasynthesis focuses on qualitative literature and provided a critical evaluation

of the literature that investigates how young people with ASC make sense of their school

experiences. Although also exploring self-concept, in contrast, this narrative review will

include research from inside and outside of a school environment and focus on the formation

of self-concept from a developmental perspective. This review will aim to answer the

following question; what does the existing qualitative literature surrounding self-concept of

children and adolescents who have been diagnosed with ASC tell us?

Method

Search strategy

Researchers have advocated that searching for qualitative studies requires a

multipronged approach as the content of the abstract and title tend to be less amenable to key

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word searching. Additionally, there is a tendency for the research to be indexed less

systematically. Thus, a variety of search strategies were utilised; searching a broad range of

electronic data bases, hand searching relevant journals and examining the reference lists of

articles identified as suitable for inclusion in the review. It was decided not to search ‘grey

literature’, or consider unpublished theses, to keep the number of papers manageable within

the available resources and to ensure the review focused on papers that had been peer

reviewed and were therefore more likely to be of a higher quality.

Search of electronic databases

An initial scoping of the literature was carried out. Searching for ‘ASC’ and ‘self-

perception’, ‘self-concepts’ or ‘identity’ yielded a vast array of results. Results were focussed

by employing the inclusion and exclusion criteria (outlined below). The finalised key search

terms addressed the population (people with ASC), the age of participants (school age

children) and the participants’ sense of self in studies utilising qualitative data collection

methods. The full search terms used to identify papers can be found in Appendix B. These

were utilised based on common key terms identified while scoping the literature. An

electronic search of six search engines was performed (PsychoINFO, Web of Science,

MEDLINE, Cochrane, British Educational Index and Child Development and Adolescent

Studies) in October 2018. All search results were exported into bibliographic software

(ProQuest RefWorks) where duplicate records were removed.

Inclusion Criteria

Articles that met the following six inclusion criteria were included in the review.

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Criterion 1; Participants: Included participants with ASC aged between 4-18 years old.

Papers involving only adolescents older than 18 years old were excluded to ensure focus on

the current landscape.

Criterion 2; Focus of the study: Focused on, or included, children or adolescent’s own

accounts of their identity or sense of self. Studies that only focused on other people’s

perspectives (for example a parent or sibling) were not included. Papers where the subject

was not specifically focused on their identity or sense of self (e.g. reputation concerns) but

which discussed this, were included.

Criterion 3; Study Design: They used qualitative methods of data collection for all of, or part

of, their study allowing for mixed methods studies to be included.

Criterion 4, 5 and 6; Nature of the publication: They were published in English (criterion 4),

in a peer-reviewed journal (criterion 5) between January 1998 and October 2018 (criterion 6).

Papers published before January 1998 were excluded in order to focus on the most recent

literature relevant for informing policy and practice.

If the inclusion criteria were not first identified in the abstract, papers were included if

criterion 1 was met. The researcher was over-inclusive to allow a comprehensive reading to

take place. Twenty-seven articles were accessed in full. Figure 1 shows the reasons for

exclusions at this stage and the process of searching.

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Figure 1. Search strategy

RECORDS IDENTIFED THROUGH DATA BASE SEARCHING

PsychINFO (n = 22)Web of Science (n = 91)Medline (n = 13)Cochrane (n = 3)British Educational Index (n = 3)Child Development and Adolescent Studies (n = 6)

ADDITIONAL RECORDS

THROUGH OTHER SOURCES

(n = 3)

Records after duplicates removed

(n = 93)

Records screened via title and abstract

(n = 93)

Articles assessed using Full-Test Review

(n = 27)

Total: Eleven Articles

Articles excluded

Inclusion criteria not met (n = 66)

Articles excludedTotal sample of participants over 18 years of age (n = 9)Only Parent views (n = 1)Only family views (n = 2)Only teaching staff views (n = 1)Quantitative methodology (n = 3)Inclusion criteria not

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Quality Assessment

Studies that met the inclusion criteria were critically appraised using an adapted

Quality Framework (QF) tool for assessing qualitative research, developed by Spencer,

Ritchie, Lewis and Dillon, (2003) which includes 18 criteria (Appendix C). The appraisal

tool was chosen as it was designed to be applied flexibly; the structure, form and content

depending on the purpose of the assessment and the type of research under review. Moreover,

rather than the tool being used as a checklist of technical procedures it is based on the

principles underlying qualitative research (Barbour, 2001). It draws on a comprehensive

review of 29 existing frameworks for assessing the quality of qualitative research, in

conjunction with discussions with practitioners, research commissioners, academics and

managers, policy makers and funders experienced in conducting and reviewing qualitative

work.

The framework is based on four guiding principles relating to research conduct:

contribution to advancing wider knowledge and understanding about policy, practice or

theory in a particular field; provision of a research design appropriate to addressing the

aims/research questions posed; methodological rigour through systematic and transparent

data collection, analysis and interpretation, and demonstrable credibility of claims made by

offering well-founded and plausible arguments about the significant of the evidence

collected. The criteria from Spencer et al., (2003) relate to methodology (aims, study design,

sampling, data collection and execution); analysis of the data (formulation and process,

diversity or perspective, sensitivity to context); reporting (clarity and coherence detail, depth

and complexity); research conduct (reflexivity, ethics, auditability) and theoretical or

conceptual insight and the extent to which knowledge and understanding is linked to the

relevant literature and theory.

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Following initial reading of the core eleven articles, each was assessed using the QF

tool. The articles were then categorised as being of high, medium or low quality. No clear

‘cut offs’ were employed to deem a paper of a certain quality, but the QT tool was used to

support the main researcher in forming a judgement about the quality of the paper. Once the

main researcher had completed the quality assessments, two articles (Baines, 2012;

Humphrey & Lewis, 2008) were assessed independently by a supervisor, who has expertise

in the topic area and methodology, to ensure consistent and credible quality assessment.

These articles were rated independently using the same QF tool. Following this process, the

resulting critique were compared point for point, there were no discrepancies requiring a

discussion, which added credibility to the assessment of the papers.

Table I outlines a summary of the studies, including detail of quality following the

quality assessment. Due to the limited research surrounding children and adolescents’

development of self-concepts the main researcher decided not to discount any papers based

on the results from the QF tool, instead the strengths and weakness of each paper were

discussed. Table II outlines the strengths and weaknesses of the research. The results of the

quality assessment are discussed in the results section of this review.

Themes: The main themes in the literature are discussed in the results section. The themes

were developed through a thematic content analysis (Anderson, 2007) of the papers included;

the number of times a given theme arose in the literature was recorded which allowed the

research to discover the salient themes across all of the papers included.

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Table I. Summary of papersPaper Quality rating Location and

Educational Context

Sample (number, age, gender) and

Diagnosis

Aims, Design and Analysis Summary of Relevant Findings

Bains (2012).

Positing, strategizing and charming: How students with Autism construct identities in relation to disability.

High US, Northern California

Mainstream secondary (high) school, 11th and 12th Grade.

2 males (16-18 years old).

Both diagnosed with Autism.

Aims: To investigate how secondary school pupils construct their identities through social interactions to belong, compete and participate.

Design: Ethnographic approach of two case studies. Interviews over the course of 2 years and video-recorded observations.

Analysis: Grounded Theory (Timmermans and Tavory, 2007) and positioning theory (Harré, 2003).

Students stories were influenced by disability labels from different contexts, which shaped their future and life trajectories.

Adolescents with Autism can engage in a sophisticated process of social positioning, influencing how they participate across contexts and formulate a complex sense of identity in relation to others.

Cage, Bird & Pellicano (2016).

‘I am who I am’: Reputation concerns in adolescents on the Autism Spectrum.

Medium London, UK.

Mainstream secondary school.

12 participants; 1 female, 11 males. Between the ages of 12-15.

Autism diagnosis (n=10). Asperger syndrome diagnosis (n=2).

Aim: To explore reputation concerns in autistic adolescents.

Design: Semi-structured interviews.

Analysis: Thematic Analysis (Braun and Clarke, 2006).

Adolescents with Autism can be concerned about their reputation. Some adolescents wanted to be accepted for being different.

Farley, Lopez & Saunders (2010). 1

Self-conceptualisation in Autism. Knowing oneself

Medium Portsmouth, UK.

Two special needs schools.

32 adolescent males.

16 diagnosed with Autistic spectrum

Aim: To investigate if self-understanding would be reduced in children with autism and if children with autism would have difficulty in conceptualising the self-through-

Self-conceptualisation ability was similar between participants with Autism and typically developing adolescents but reduced in participants with Autism under the

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versus knowing self-through-others.

disorders

16 typically developing adolescents.

others perspectives.

Design: Self-Understanding Interview (Damon and Hart, 1988) – structured interview (deductive approach).

Analysis: Content analysis.

category of ‘agency’.

Participants with Autism were less able than typically developing adolescents to conceptualise themselves from another’s perspective.

Farmer, Robertson, Kenny & Siitarinen (2008). 1

Language and the development of self-understanding in children with communication difficulties.

Medium North East of England, UK.

A special school for pupils with communication disorders.

Pupils with Specific Language Impairments (SLI) (n=10, mean age, 12.26 years).

Pupils with Asperger’s Syndrome (AS) (n=9, mean age 13.72 years)

Sex of the participants is not reported.

Aim: To investigate the developing self-concepts of young people with Asperger’s Syndrome and specific language impairments and to consider the ways in which this aspect of development may affect mental health and social adjustment and what may be done to improve the outcomes in these areas.


Analysis: Qualitative data: Content analysis.

Quantitative data: ANOVA and Tukey post-hoc analysis looking at the difference between the numbers of chunks produced for each group.

Compared to children with SLI children with AS had less developed concepts of their social, interpersonal selves.

There was a tendency for children with AS to be more inward-looking in their reflections than individuals of their own age and same language level.

Humphrey & Lewis (2008).

‘Make me normal’: The views and experiences of pupils on the autistic

High North West England, UK

4 mainstream secondary schools

20 participants between the age of 11-17 years old.

Gender ratio not reported.

Aim: To explore views of pupils with Autism surrounding mainstream education and their everyday experiences in school.

Design: Semi-structured interviews,

Participants reported negative perceptions of their differences, such as having a ‘bad brain’.

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spectrum in mainstream secondary schools. AS or HFA (term

used interchangeably)

diaries and pupil drawings.

Analysis: Interpretative phenomenological analysis (IPA) (Smith & Osborn, 2003)

Huws & Jones (2015).

‘I’m really glad this is developmental’: Autism and social comparisons – an interpretative phenomenological analysis.

High Wales, UK.

Specialist colleges for young people with Autism.

9 participants between the age of 16-21; 3 females, 6 maless.

All diagnosed with Autism.

Aim: To investigate individual’s perceptions and experience of Autism, with a focus on social comparisons.

Design: Interviews

Analysis: IPA (Smith et al., 2009)

Young people view themselves more positively in the present.

When making comparisons with other people with and without Autism, they tended to locate themselves as being in a better position than others.

Autism was viewed more favourably than what was termed a ‘proper’ disability.

Lee & Hobson (1998). 1

On Developing Self-Concepts: A Controlled Study of children and adolescents with Autism.

Low London, UK.

Unknown Educational context.

12 Autistic ‘children’; 8 males and 4 females. Mean age 15 year 6 months.

Control group: 10 ‘non-autistic mentally retarded children’; 8 males and 2 females. Mean age 14 years 8months.

Aim: To investigate if people with Autism have impairments in responding to, identifying with and understanding other people and therefore would be less prone to integrate other people into their self-characterisation.


Analysis: Qualitative data: Content analysis.

Quantitative: Interview data was chunked and then scored. Statistical

Participants with Autism produced significantly fewer statements in the ‘social’ category, even though they were similar to the non-autistic control group in producing other kinds of self-concepts.

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analysis was carried out on the number of items in each chunked group.

Mogensen & Mason (2015).

The meaning of a label for teenagers negotiating identity: Experiences with Autism Spectrum Disorders

Medium Sydney, Australia.

Unknown Educational context.

5 participants between the ages of 13-19 years old with a diagnosis of Autism.

Male and female participants included: does not state the number of each sex.

Aim: To learn about the lives of young people diagnosed with autism from their own experience. To understand the meaning of the diagnosis of the autism at the individual personal identity and at the socio-relational or public level.

Design: Face to face interviews as well as email communication.

Analysis: Thematic Analysis and an interpretative frame work (Richards, 2005).

A diagnosis was associated with negative experiences – of being stigmatised and treated differently from typically developing children.

Some young people found the diagnosis helpful in terms of better understanding oneself; legitimising difference and empowering them to negotiate living lives of difference.

Skovlund (2014).

Inclusive and exclusive aspects of diagnosed children’s self-concepts in special needs institutions.

Medium Denmark.

Special Needs School.

8 males between 7-11 years old.

Diagnoses included Autism, attention deficit hyperactivity disorder (ADHD) and non-verbal learning disorder.

Aims: To investigate: What constitutes diagnosed children’s self-concepts and notions of identity within special needs programmes? Are views of the diagnoses an integrated part of the children self-concept? How are the children’s self-concepts affected by others within special needs contexts? What perspectives arise from these self-concepts with regard to the children’s motivation for participating in general learning communities later in life?

Design: Semi-structured interviews combined with a play session (with toys and figures) to provide a broad

Children use a simplified medical model for understanding their diagnoses and behaviour.

They partly perceive the special school as a medical institution as well as an educational institution.

Children consider themselves different from normal children and incapable of participating in shared learning communities such as state schools.

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range of opportunities to express themselves.

Analysis: Does not explicitly say – appears as if content analysis has been used on an interpretative level.

Sumiya, Igarashi & Miyahara (2018).

Emotions surrounding friendships of adolescents with Autism Spectrum Disorder in Japan: A qualitative interview study.

Low Tokyo and Okayama, Japan.

Private remedial centres, college-based remedial teaching centres and special education classes.

8 males and 3 females between the age of 10-15 years old.

2 diagnosed with Autism, 7 with Asperger’s syndrome and 2 with Pervasive Developmental Disorder.

Aims: To describe friendships in adolescents with ASC in Japan. To explore the experience of anxiety and loneliness in the context of the desire of adolescents with ASC to make friends at school.

Design: Individual semi-structured interviews

Analysis: Thematic Analysis.

Participants demonstrated, to different degrees, a desire to socialise with peers, limited future prospects to deepen friendships, solid awareness of their own social limitations and efforts to cope with these limitations.

Anxiety and loneliness play a role in the process of maintaining friendships

Winstone, Huntington, Goldsack, Kyrou & Millward (2014).

Eliciting rich dialogue through the use of activity-orientated interviews exploring self-identity in Autistic young people.

High South East of England, UK.

A school that catered for a range of special educational needs.

Study 1: 5 participantsStudy 2: 8 participants. All male and between the ages of 12-14.

All diagnosed with Autism.

Aims: To explore young people’s self-perception and self-awareness; if and how young people can project themselves into the future, participants perception of themselves as a person diagnosed with ASC and; participants comparisons of themselves with others.

Design: Study 1: semi-structured interviews.Study 2: semi-structured interviews with a series of activities (including art activities) using a mirror to describe what they saw.

Activity orientated interviews can be used effectively in one-to-one interviews.

The participants demonstrated a clear awareness of the self and articulated aspects of the self that are distinctive with making comparisons with others. They were able to give vivid descriptions of future and visualise themselves in the future. They showed some ability to perspective-take; expressing differences in personalities and likings.

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Analysis: Thematic Analysis (Braun and Clarke, 2006).

1 Mixed design studies, meaning that relatively limited space was available to present qualitative findings. The quality rating relates to the qualitative component only.

Table II. Summary of strengths and limitations

Paper & Quality rating Strengths LimitationsBains (2012).

Quality Rating - High

Approach to, and the formulation of the analysis has been conveyed clearly, context of the data sources retained and portrayed. A large amount of detail, depth and complexity of the data has been retained and discussed and the links between the data, interpretations and the route to the conclusions is clearly described.

Not clear how the findings can be transferred to a wider population and there was no discussion of limitations of drawing wider inferences. However, this is the nature of case studies.

Cage, Bird & Pellicano (2016).

Quality Rating - Medium

Defensible research design, clear description of sample and how data collection was carried out. The findings are supported by the data and make coherent logic with use of corroborating evidence to support them. Findings presented in a way that offers new insights and discussion of the limitations of the research.

Not clear what the main assumptions or theoretical perspectives are which shape the study nor the findings of the study.

Farley, Lopez & Saunders (2010).


Study focus and method clearly justified and explained in the context of the existing body of knowledge, defensible research design. Analysis clearly explained. Findings and conclusions make logical sense and are supported with data. New areas for investigation are identified and discussions of the limitations of the evidence and what remains unclear are clearly stated.

Participants perspectives not placed in personal context – but this is in keeping with the design.Main assumptions and theoretical perspectives which shape the findings are not discussed.

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Farmer, Robertson, Kenny & Siitarinen (2007).


Study focus and method clearly justified and explained in the context of the existing body of knowledge, defensible research design. Sample and process for data collection are clearly described. Clear links between analytic commentary and presentation of data and discussion of how particular interpretation is assigned to specific aspects of data. Credible findings and use of corroborating evidence to support findings and new area’s for investigation identified.

Little critical discussion of any relevant research using similar methodological approaches. Participants perspectives not placed in personal context – but this is fitting with the design.Main assumptions and theoretical perspectives which shape the findings are not discussed. Lack of attention paid to ethical issues.

Humphrey & Lewis (2008).


Well situated in current research, aims and design set in context of existing research. Profile of participants described (age range, location & school setting). Approach to and formulation of analysis conveyed well and extracts used to portray information. Research process clearly documented. Richness of data conveyed through nuances and discussion of patterns as well as attention given to cases of exception; extracts of data included. Clear reporting and clear links between data and interpretations and conclusions. Credible findings which are discussed in the context of extending current understanding.

No information surrounding race/ethnicity.No description of content or structure of interview schedule.

Huws & Jones (2015).


Well situated in current research, aims and design set in context of existing research. Detailed profile of sample included (genders & ages). Process for data collection clearly described. Approach to and formulation of analysis conveyed well and extracts used to portray information. Richness of data conveyed through nuances and discussion of patterns as well as attention given to cases of exception. Clear reporting. Attention paid to ethical issues. Credible findings which are discussed in the context of extending current understanding.

No information surrounding race/ethnicity.The assumptions and values that shape the findings of the study are not very clear.

Lee & Hobson (1998). Situated in the context of existing research and aims of the research discussed. Profile of participants included

Not clear how participants were recruited, no description of study location and why chosen. No

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Quality Rating - Low (mean age, mental age, gender & diagnosis). Process for data collection described and items of the self-understanding interview included in a table. Findings make logical sense.

information surrounding race/ethnicity. Participants perspectives not placed in personal context – but this is fitting with the design. Only one small extract of a transcript included and diversity of perspective not explored or discussed; no evidence of attention to nuances within the data. No evidence of reflexivity. Lack of discussion surrounding attention paid to ethical issues.

Mogensen & Mason (2015).


Research focus set in the context of the existing body of knowledge and discussion of the philosophy of the approach adopted. Description of sample included (age, diagnosis & recruitment process). Information surrounding the analysis processed detailed and the richness of the data was conveyed through nuances and discussion of patterns as well as attention given to cases of exception. Clear reporting and links between data and interpretations and conclusions were drawn well. Credible findings which are discussed in the context the current literature and extending current understanding.

No description of study location and why it was chosen. Gender of participants not described but could be inferred from pseudonyms. No information on who conducted data collection or if interviews were recorded. Lack of detail surrounding attention to ethical issues.

Skovlund (2014).


Research focus set in the context of the existing body of knowledge and clear discussion of the philosophy of the approach adopted. Discussion of how research was designed to meet the aims of the study. Description of sample included (gender, age range & diagnosis). Approach to and formulation of analysis conveyed and extracts used to portray information as well as participants drawings. Richness of data conveyed through nuances and discussion of patterns as well as attention given to cases of exception. Clear reporting - key messages summarised. Links between data and interpretations and conclusions were drawn. Credible findings which are discussed in the context of the current literature and extending current understanding.

No description of study location and why it was chosen. No information surrounding race/ethnicity of participants. No information on who conducted data collection or if interviews were recorded. Analysis process not explicitly named. Lack of details surrounding attention to ethical issues.

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Sumiya, Igarashi &Miyahara (2018).

Quality Rating - Low

Situated in the context of existing research and aims of the research discussed. Profile of participants included (age, verbal IQ, gender, ethnicity, diagnosis & where they were recruited from). Process for data collection described. Findings make logical sense. Limitations of research discussed as well as idea’s for future research.

Not clear how participants were recruited. Participants perspectives not placed in personal context. Small extracts of transcripts included but diversity of perspective not explored or discussed; no evidence of attention to nuances within the data. No evidence of reflexivity; no discussion of main assumptions which shape the research. Little discussion surrounding attention paid to ethical issues.

Winstone, Huntington, Goldsack, Kyrou & Millward (2014).


Well situated in current research, aims and design set in context of existing research. Profile of participants described (age range, gender location & school setting). Approach to and formulation of analysis conveyed well and extracts used to portray information. Research process clearly documented. Richness of data conveyed through nuances and discussion of patterns as well as attention given to cases of exception; extracts of data included as well drawings from participants. Clear reporting and clear links between data and interpretations and conclusions. Credible findings which are discussed in the context of extending current understanding.

No information surrounding race/ethnicity.

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Results

Search results

The search produced 138 articles, eleven met the inclusion criteria, with publication

dates ranging from 1998 – 2018.

Description of included studies: All but one of the studies represented the experience of

people with ASC in Western societies. Of the eleven studies, seven were conducted in the

UK, one in the USA, one in Australia, one in Denmark and one in Japan. The young people

included were predominantly described as having a diagnosis of autism (n = 7), this was

either referred to using the term Autism Spectrum Disorder (ASD) or High Functioning

Autism (HFA) or the two terms were used interchangeably by some studies. Three studies

included people with Autism and Asperger’s Syndrome and three included people with other

conditions such as Attention Deficit Hyperactivity Disorder (ADHD), Specific Language

Impairments (SLI), nonverbal learning disorder and Pervasive Developmental Disorder

(PDD). Of the eleven studies, five gave details of who had been involved in giving or

confirming a formal diagnosis and what instruments had been used in doing this. All studies,

apart from two, stated details of the schools the participants were attending; five of the eleven

studies recruited individuals from special needs schools. Of the eleven studies, two did not

report the gender ratio of the participants, four studies only included a male sample and five

included males and females. Of the numbers reported there were 88 males and 11 females.

All the papers specified their main aim was to focus on investigating the developing

self-concepts of young people (or particular aspects of this experience such as reputation

concerns and developing friendships or the meaning of their diagnosis) with ASC and to learn

about their lives. Three papers aimed to investigate this at not only the individual level, but

situated within a larger framework, for example within a general learning community or

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within a larger culture of ‘disability’, ‘success’ and ‘smartness’. All papers solely focused on

the perspectives of the young people themselves to achieve this, with only one also including

the views of one of the participant’s mothers (Mogensen & Mason, 2015). All researchers

used semi-structured interviews as their main method of data collection. Six studies only used

semi-structured interviews and of these, three studies employed the semi-structured ‘Self

Understanding Interview’, by Damon and Hart (1988) as their main method of data

collection. The remaining five studies combined semi-structured interviews with email

correspondence, observations, pupil drawings and diary entries or an art or playful activity. In

order to analyse the information collected, four studies employed thematic analysis (TA), two

studies employed Interpretative Phenomenological Analysis (IPA), one study employed

Grounded Theory, the three studies who employed the ‘Self Understanding Interview’

utilised Content Analysis (CA) and one study (Skovlund, 2014) did not explicitly state the

form of analysis they employed, but it was deduced that CA had been utilised.

Results of the quality appraisal

High rated studies: Four of the eleven studies were reviewed as being of high quality. These

studies justified and explained the context of the existing body of knowledge in which their

study was set. The rationale for the study was discussed, as well as the research design which

was employed to meet its aims. The participants were clearly situated, and the studies

provided a clear description of the methods used and how data collection was carried out. The

studies also implicitly or explicitly addressed relevant ethical issues (consent, confidentiality,

anonymity, discussion of potential harm through participation). The theoretical perspectives

which shaped the way the data was collected and analysed were stated and the process of

analysis was clearly conveyed. The context of data sources was retained, quotes were used to

demonstrate this, as well as case study information. Diversity of perspective in the papers was

explored with exceptions, nuances and complexities being clearly portrayed and explained,

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capturing the richness of the data. The high-quality papers neither under, nor over, analysed

the data (Sandelowski & Barroso, 2007) and the findings were reported clearly and set in the

context of relevant research and theory. The findings were integrated and interpreted in

relation to previous research and there was discussion of how researchers sought to extend

the research surrounding their topic area.

Medium rated studies: Five studies were rated as being of medium quality. They typically

had two or three shortcomings surrounding the methodological approach, analytic process or

reporting. Some did not provide adequate background information about participants,

recruitment or the educational setting. In some cases, a sufficiently detailed account of the

process of data collection was not provided; three studies did not discuss who collected data

or the means by which it was recorded (audio/video taped). Descriptions of the data were

well grounded in extracts. Whilst one study failed to name the specific analytic process

employed, adequate detail relating to the findings was included in all of the medium rated

papers so that the reader could discern what was actually done (Sandelowski & Borroso,

2007). Three studies lacked evidence of reflexivity (Yardley, 2000) and there was little

discussion of the values or assumptions which underpinned how the researcher collected and

analysed the data. Furthermore, most medium rated studies did not comprehensively set their

research, or findings, in the context of existing or relevant knowledge.

Low rated studies: Of the eleven studies, two were reviewed as being of low quality. Their

credibility was compromised by major flaws in the way in which the research process was

documented and in how the data was analysed and reported. One of the studies did not

include sufficient extracts of the data and both studies did not adequately describe the context

of the participants. The data appeared to be under analysed; failing to discuss the intricacies

within it and note of negative cases was not included. Both studies lacked evidence of

reflexivity; neither the main assumptions which shaped the study, nor the ideological

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perspectives of the researchers, were discussed. Furthermore, little attention was paid to

ethical issues.

Themes

After an initial reading of the core eleven papers, key themes were identified in the

research findings and used to structure the present review. The themes identified as aspects of

the self-concepts of the young people with ASC included: experiences and perception of

diagnosis; comparison to others; friendship; and the social-self and own self-perception.

Experience and perception of a diagnosis contributing to a sense of being ‘different’:

Experience and perception of an ASC diagnosis was a factor identified within the papers

reviewed as influencing an individual’s identity and self-concept. Within six studies that

focused on older participants (12 years +) the researchers found participants described their

diagnosis as a means of understanding and creating ‘difference’ from their peers (Baines,

2012; Mogensen and Mason, 2015; Winstone, Huntington, Goldsack, Kyrou and Millward,

2014; Humphrey & Lewis, 2008; Huws & Jones, 2015). The participants thought of

themselves as different due to their diagnosis, as well as describing the diagnosis as

highlighting that they were different to those around them. They reported this ‘difference’

elicited negative reactions towards them from others, such as fear and apprehension. This

suggests participants made sense of themselves as being feared by others due to the perceived

difference and subsequently adjusted their actions to display ‘behaviour expected by others as

‘best behaviour’ (Baines, 2012, page 553). For some participants there was a sense that they

would rather not have been aware of their diagnosis, as they viewed their diagnosis as being a

barrier to being considered ‘normal’.

Some adolescents used their diagnosis as a frame of meaning to explain behaviour

which was different from their peers. For example, the participants in Huws and Jones (2015)

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research made downward social comparisons, stating they were fortunate to have ASC in

some respects because of the heightened abilities in certain activities, in comparison to those

who did not have ASC. A common theme in studies of adolescents was that their diagnosis

actively structured their identity through highlighting their difference from their peers.

Additionally, there was a sense, for some participants, that their diagnosis helped build their

own self-awareness; participants in Mogensen and Mason, (2015) research explained how

finding out about their diagnosis earlier could have aided in understanding themselves and

their experiences. Thus, as well as discussing the role that diagnosis plays in self-awareness,

participants were aware of, to some extent, how their diagnosis may cause them to be

perceived by others.

In contrast, studies involving younger participants (7-11 years old; Skovlund, 2014)

suggested that the diagnosis of ASC was not an important part of their self-concept. One

participant described his parents’ divorce as more of a special characteristic than having a

diagnosis. However, this may be due to the fact that all of the children in Skovlund’s (2014)

research attended a special needs school and therefore ‘difference’ may not be apparent to the

same extent when compared to children in a mainstream school setting such as the

adolescents in Baines (2012) study.

Comparison to others informs sense of being ‘different’: Evidence from the papers reviewed

suggests socially, young people with ASC have a strong sense of distinctiveness and

difference from others (Farley, Lopez & Saunders, 2010; Huws & Jones, 2015; Winstone et

al., 2014). When adolescents with ASC compared themselves to others, they noted they tried

to behave in a more socially acceptable way and that they may not relate to everyone around

them. Cage Bird and Pellicano (2016) reported one of the adolescents in their study used the

internet to connect with others who also faced social challenges. This may suggest that

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noticing these differences was uncomfortable and participants were continually trying to

reduce their sense of ‘difference’.

However, Huws and Jones (2015) also noted some positive differences being reported

when adolescents compared themselves to others. Some adolescents in their study spoke of

themselves as being more fortunate in some respects due to their heightened skills in some

areas. They also noted that although adolescents with ASC described themselves as having a

disability, they felt they were ‘only a bit disabled’ and not really ‘disabled-disabled’. This

highlights that the adolescents in this study (who were aged between 16-21 years old) were

evaluating the differences they perceived, which contrasts with Winstone and colleagues’

research (2014).

Conversely, Winstone and colleagues (2014) was the only study to report that some

participants distinguished difference without positively or negatively appraising it. The

participants in this study were younger in age (12-14 years old) than those in Huws and Jones

(2015) research and this may suggest the level of evaluation increases with age, as the views

of other people around them become more important and their concern to fit in increases.

However, it is important to note their research was carried out in a special needs school and

again, ‘difference’ may not be apparent to the same extent when compared to children in

mainstream settings.

The perception of a social self: Friendship: Cage, Bird and Pellicano (2016) suggest

adolescents are concerned about their reputation; they change their behaviour to make others

like them and that they worry about their friendships and the challenges they face socially.

This is consistent with previous research which has shown that cognitively-able adolescents

with ASC report increased concerns about friendships and an increased awareness that they

are different from other people (Carrington, Templeton & Papinczak, 2003).

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As well as discussing ‘difference’ to their peers, it was noted that many of the

participants in the studies reviewed also spoke of friendships they had developed, or aspects

of friendship; belonging to friendship groups or a loneliness that came from not feeling part

of a friendship group. Previous research has noted neurotypical adolescents value close peer

relationships (Jankowski, Moore, Merchant, Kahn & Pfeifer, 2014). All of the participants in

Cage and colleagues’ (2016) research reported having friends and, although they found it

difficult to articulate what ‘friendship’ was, it was mostly discussed in terms of spending time

with or helping another peer.

Additionally, there appeared to be a ‘mental load’ that came with developing and

maintaining friendships. Cage et al., (2016) reported some participants worried about peers

disliking them, while Baines (2012) explained participants would manage their ‘autistic

behaviour’ in order to manage worries surrounding others’ perceptions. They believed if they

did not manage their behaviour they would be seen as ‘cuckoo, crazy’; perhaps alienating

themselves from their peers, suggesting they are concerned with self-presentation,

particularly with peers. Sumiya and colleagues’ (2018) findings support this, as participants

(aged 10-15 years old) described letting friends win at card games to preserve friendships, or

masking difficulties in social situations in which they wanted to develop friendships, such as

pretending to understand conversations. Thus, for some participants belonging and the need

to fit in continually shaped their interactions with peers or others around them.

Whilst some studies (Cage et al., 2016) reported most of the participants were

satisfied with their friendships and that they were successfully included at school (Humphrey

& Lewis, 2008), others (Skovlund, 2014) noted that participants had difficulty with peers or

that a theme of loneliness arose within their interviews (Sumiya et al., 2018). The participants

within Sumiya and colleagues’ (2018) study described difficulties with casually socialising

with peers at school and the lack of opportunities to develop friendships exacerbated feelings

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of loneliness for some. Thus, it appears social interaction and friendships formed an

important part of people understanding their social-self.

Own self-perception and self-awareness: Farmer Robertson, Kenny & Siitarinen (2008),

found that participants with Asperger’s syndrome spoke more about the psychological-self

(references to individuals’ emotions, thoughts, preferences or other cognitive processes) in

comparison to participants with speech and language impairments. They proposed this may

be due to pre-occupations which lead to, or reflected, the anxiety and stress which research

has shown is common in Asperger’s syndrome (Voci, Beitchman, Brownlie & Wilson, 2006).

Cage and colleagues’ (2016) research also found that when directly evaluating themselves,

most of the participants described themselves in terms of their physical traits with only a few

describing personality traits.

Moreover, Farmer et al., (2008) noted participants would frequently refer to their

negative emotional states, for example, ‘sometimes I’m just like out of it, well I’m just like

some sort of angry or something’. Other researchers (Skovlund, 2014) noted that participants

reported difficulty in controlling themselves, or they tried to manage their appearance and

social acceptability through not disclosing their ASC diagnosis (Humphrey & Lewis, 2008).

Other researchers (Huws & Jones, 2015) noted that participants described themselves

in favourable ways; listing things that they believed they were good at, showing a positive

self-perception, perhaps suggesting that only certain aspects of the self were different to their

peers. Additionally, Baine’s (2012) research depicts the internal debate that participants have

when trying to position themselves socially, acting in a self-aware manner.

It appeared that the methodology employed also affected the richness of the data

collected. Winstone et al., (2014) and Lee and Hobson (1998) employed semi-structured

interviews in their research. They found that participants had difficulty in describing

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themselves, but when they did, it mainly consisted of concrete physical characteristics or

mentioned their name or age. Nevertheless, when Winstone et al., (2014) employed

alternative methods such as drawing themselves or looking in a mirror in the activity

orientated interview, the descriptions were more abstract and went beyond physical

characteristics. Furthermore, Humphrey and Lewis (2008), also employed additional data

collection methods; pupil diaries and drawings. They found, like Winstone and colleagues

(2014), that the description that the participants gave of themselves was much richer;

discussing the notion of being different or accepting their diagnosis. Thus, it seems that the

methodology employed may support or hinder researchers from discovering new information.

Discussion

The key findings from the papers reviewed can be captured in four main themes: a

person’s experiences and perception of diagnosis in adding meaning to their self-concept;

how children and young people compare themselves to others; the role that friendship plays

in their self-concept; and, the social-self and own self-perception in creating their self-

concept. Within the literature there is a focus on the experiences of older adolescent males

from Western cultures who are verbal and cognitively able. Additionally, there are several

methodological weaknesses, limitations and gaps in the research, which will be discussed,

before moving on to draw final conclusions.

Recreating information

Only a small number of studies justified and explained their focus in the context of

the existing body of knowledge; there was little critical discussion of any relevant empirical

research using similar methodological approaches or investigating similar topics. Whilst this

may be expected in earlier research, due to a lack of literature from which to draw on, it was

also true of the later papers (e.g. Farmer et al., 2007). Additionally, some papers that included

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participants with other diagnoses, such as ADHD, discussed the previous literature related to

these diagnoses, but did not adequately address the current literature related to ASC (e.g.

Skovlund, 2014). Therefore, instead of the literature linking together and building on the

existing knowledge, there was a sense that most studies started from scratch or gave very

little in the way of critical discussion of relevant empirical research using similar

methodological approaches or investigating a similar or related topic. Therefore, this makes it

difficult to further our current knowledge and understanding of the literature and identify

gaps where subsequent investigations are warranted and inevitably, further exploratory

studies are required.

Failure to fully situate participants

Participant age ranges: Much of the research focused on children and adolescents’

experiences who were older than twelve years old. Only one study (Skovlund., 2014) solely

used participants who were under twelve years of age; seven-eleven years old. Humphrey and

Lewis (2008), included participants from eleven-seventeen years old, however they do not

state how many of their participants were eleven. The remaining studies focus on

adolescents’ views and experiences. Therefore, there is a paucity of literature surrounding the

experience of children with ASC in the first ten years of their life, at a time where they are

going through many developmental stages. Two studies (Huws & Jones, 2015; Mogensen &

Mason, 2015) included participants over the age of 18 years old. It was decided to include

these papers in the review as they also included the perspective of younger adolescents.

Research has shown that from the age of seven years old, children are more likely to compare

their own abilities with those of others (Livesly & Bromley, 1973). Additionally, Piaget

(Wadsworth, 1996) suggests from the age of seven-to-eleven children enter the ‘Concrete

Operational Stage’ in their development; where they become increasingly aware of external

events and begin to realise that their own thoughts and feelings may not be shared by others.

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Thus, it is important to investigate the experience of younger children (aged five-eleven years

old) as this information can be used to inform clinicians or educational practitioners of the

specific needs and concerns of the pupils in different stages of their development and support

these professionals to understand how later experiences build on earlier ones.

Gender: Three studies (Mogensen & Mason., 2015; Farmer et al., 2007; Humphrey & Lewis.,

2008) failed to report key characteristics of research participants such as the number of males

and females included. Failure to do this means the reader is unable to sufficiently consider the

range of situations, or persons that the findings may be relevant to. Additionally, further

research investigating similar or related topics will need to tentatively and critically discuss

the findings of this research, if they are, for example, investigating only the views of either

males or females.

Furthermore, much of the current literature has been focused on males’ views and

experiences. Four of the studies (Baines, 2012; Farley, Lopez & Saunders, 2010; Skovlund,

2014; Winstone, Huntington, Goldsack, Kyrou, Millward, 2014) only employed male

participants. While the remaining four studies included in the review included female

participants, none of the sample sizes exceeded four female participants, in comparison to a

minimum of eight male participants. Therefore, it is hard to infer understanding from these

findings about how females make sense of the self, or to extrapolate anything about gender

differences in relation to self-understanding in young people with ASC.

Overall, there is a lack of research surrounding girls’ experience of their ASC and

how this relates to their formation of self-concept. One of the themes identified in the

literature, comparison to others, may be particularly affected by gender differences as

previous research suggests there are gender differences in the peer relationship process (Rose

& Rudolph, 2006). Moreover, the third theme of own self-perception and own self-awareness

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may also be affected by gender differences as Chaplin and Aldao (2013) and Oswalt (2014)

suggest there are gender differences in emotional and behavioural development. Thus, there

is compelling evidence to suggest the experience of girls and boys who have been diagnosed

with ASC is markedly different. This may reflect the fact that males are more likely to be

diagnosed with ASC (APA, 2013), however, it may also suggest girls’ descriptions of their

self-concept have not been adequately investigated.

Ethnicity: While all but one of the studies represented the experience of people with ASC in

Western societies, only one study (Cage, Bird & Pellicano., 2003) reported on the culture or

ethnicity of their sample. Although UK policy and practice may be best informed by studies

conducted in Western education settings it is important that we investigate the experience of

students from a range of cultures and ethnicities to increase our understanding. Britain is now

a multicultural country and with the current social climate it may be that migrant children

moving to the UK may have or acquire an ASC diagnosis.

Setting and ability: Five of the eleven studies (Farley, Lopez, Saunders, 2010; Farmer et al,

2008; Huws & Jones, 2015; Skovlund, 2014; Winstone et al., 2014) recruited individuals

from special needs schools. This is surprising when considering the idea of inclusion is

important in social and educational policy (Paliokosta & Blanford, 2010). Some studies (Lee

& Hobson,1998; Mogensen & Mason, 2015) provided insufficient background information

about the participants, for example their educational setting was not referenced nor the

selection or recruitment process. Thus, it is unclear if four, or six, of the eleven studies

carried out their research in a mainstream setting.

Within the research carried out at both the special and mainstream schools, the

researchers often failed to fully situate the participant within the school environment. For

example, none of the eleven studies explained if the participants received additional support

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from a different teaching environment (such as a special needs unit within a mainstream

school, or smaller lessons carried out by a special educational needs coordinator (SENCO) or

individual support at school, through someone such as a learning support assistant (LSA) or a

SENCO. This is surprising, considering that one study (Humphrey & Lewis, 2008) also

interviewed LSAs as part of their research. However, this study did not explicitly state if all

the participants gained support from a LSA. This lack of clarity may prevent helpful practices

from being developed to support children in both settings.

Finally, some studies (Cage, et al., 2016; Lee & Hobson, 1998) described the

participants using standardised measures. Lee and Hobson, (1998) employed the Childhood

Autism Rating Scale (CARS; Schopler, Reichler & Renner, 1988) and reported the mean

score for the number of participants, which was considered the typical score for people with

ASC. Cage et al., (2016), utilised the WASI-II (Wechsler Abbreviated Scale of Intelligence,

Second Edition; Wechsler & Hsiao-pin, 2011) to confirm that participants did not have a

learning disability and employed the Social Communication Questionnaire (SCQ; Rutter,

Bailey & Lord, 2003) to confirm the participants scored above the threshold for ASC. These

measures are useful for researchers or practitioners who understand the meaning of the

scores, however, they do not aid in situating the participant within the class or school.

Data collection & Analysis

Data collection methods: The predominant data collection method, semi-structured

interviews, may mean the experience of children who are less verbal or cognitively able is

under represented. The nature of semi-structured interviews can highlight the power relations

between the adult and child, especially in a school setting. This may cause the child to feel

pressured to participate, especially if the researcher is unfamiliar. Additionally, interviews

may be a less effective way of understanding the experience of children with ASD if it is

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difficult for them to communicate verbally (Skovlund, 2014). Therefore, it is important that

we develop practices to engage children and understand their viewpoints; perhaps including

other resources such as photos, toys or drawings (Cook & Hess, 2007; King et al., 2017).

This may be of particular importance when working with children who are less verbally or

cognitively able and those from an ethnic minority; as Tek and Landa (2012) demonstrate

that children from an ethnic minority have more severe problems with language and

communication in comparison to their white peers.

Three of the eleven studies employed The Self-Understanding Interview (Damon &

Hart, 1988), which is scored by first chunking the speech, deciding what section of the

manual the chunk belongs within and then matching the chunk to a developmental level

within that section. The manual only allows scoring for those chunks in which the subject has

been given a full chance to explicate his or her reasoning or meaning. Therefore, the

chunking process suggests the interviewer has made a decision on what they consider

important or not, before the interview has been carried out. This may have prevented the

‘voice’ of the person from being heard, which, in turn, could mean key information being

excluded from the chunking procedure.

Lack of transparency and detail in reporting of analytic processes: Of the papers employing

the Damon and Hart (1988) Self-Understanding Interview, none explicitly explained the

analysis process or the assumptions that underpinned this. However, it appears the analysis

was shaped predominately by the interview framework and this may have resulted in

information being missed. The lack of clarity over the analytical methods used is detrimental,

because if we do not know how the data was analysed, we are unable to properly evaluate it

and compare it with other studies on the topic.

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Two studies (Skovlund., 2014; Farmer et al., 2008) employed participants with other

learning disabilities, for example children with Nonverbal Learning Disorder (NLD), Specific

Language Impairments (SLI) and those with ADHD. In both studies the reader is guided

through the author’s findings for the different participant groups. However, it is not clear if

the researcher was aware of the participants’ differing diagnoses while analysing the semi-

structured interview, or if the data was organised into themes surrounding the participants’

differing diagnoses after the analytic process was completed. Moreover, Sumiya, Igarashi and

Miyahara (2018), included a child with a diagnosis of Obsessional Compulsive Disorder

(OCD) in their study. Although a table in their paper highlights which child has been

diagnosed with OCD there is an expectation for the reader to hold this information in mind

while reviewing the results section. There is no discussion of how this diagnosis may have

influenced the child’s perspective, thus, perhaps impacting on their results and conclusions.

Conclusions

The findings show there are key gaps within the literature. There is a focus on the

experience of older children’s who are from Western cultures, whereas the experiences of

females with ASC who are younger than eleven years old, from non-Western cultures and

who are less verbally or cognitively able are largely missing. Moreover, a limited range of

methods have been utilised and there is a lack of transparency in the reporting of the analytic

process.

Further research is needed in this area to address the methodological limitations

identified in this literature review. The qualitative studies utilised semi-structured or

structured interviews as the main data collection tool. However, this form of data collection

can impose greater constraints on self-expression. Further qualitative studies are required in

this topic area utilising not only semi-structured interviews but also other means for the

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participants to express their understanding of self-concept. Bagatell (2007) suggested that the

identities of people with ASC are not an underlying substance to be discovered but are

constructed through engagement with social worlds. Therefore, subsequent research should

not only focus on the individual, but place this individual in institutional and sociocultural

storylines. This may mean we can gather richer information surrounding the notion of self-

concepts for those with ASC. Williams and colleagues (2017) suggest more qualitative

research on autistic children’s experience is needed in exploring their self-concepts.

Therefore, it is acknowledged that in-depth qualitative methods allow individuals to express

their views, and these accounts provide professionals (such as teachers and health care

professionals) with a valuable source of information when developing practice.

Furthermore, the research surrounding self-concepts could be extended by focusing

on knowledge about the self that is not exclusively focused on physical and psychological

traits. For example, school children take on many new social roles; student, friend, team

member. Investigating self-concept with regard to social roles, friendships and peer relations

will add to our understanding of self-concept in children with ASC. Relatively little is known

about these aspects of self-concept, as studies have mainly gathered information in the

context of interviews. Thus, assessing self-concept in relation to social roles may be best

done in a variety of situations, for example play situations, allowing researchers to access

other areas of self-concept.

This review of the qualitative literature surrounding self-concepts of children and

adolescents who have been diagnosed with ASCs has highlighted some methodological

limitations within the current literature. Several gaps in our current understanding of this area

have been identified; the views of young children, females and those from non-Western

cultures. Addressing these will further our understanding of children’s experiences, which

will in turn allow future researchers to better inform clinical practice and educational policy.

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Given that the available literature in this area is limited, it is only possible to make very

tentative recommendations to clinician’s based on this review. We can tentatively suggest to

clinicians that a person’s experiences and perception of diagnosis does add meaning to their

self-concept. Children and young people with ASC do compare themselves to others, and

their friendships do play a part in their developing self-concept. However, it must be born in

mind that our knowledge of the developing self-concept is predominantly drawn from a male,

Western sample, and therefore potentially obscures cultural and gender variability. Clinicians

are advised to employ individualised approaches for working with this client group, and not

to make assumptions about self-concept based purely on the available literature.

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Appendices Contents Page


Appendix B: Search terms used

Appendix C: Quality Assessment Questions

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This Journal is a member of the Committee on Publication Ethics

Please read the guidelines below then visit the Journal’s submission site http://mc.manuscriptcentral.com/autism to upload your manuscript. Please note that manuscripts not conforming to these guidelines may be returned.

Only manuscripts of sufficient quality that meet the aims and scope of Autism will be reviewed.

There are no fees payable to submit or publish in this journal.

As part of the submission process you will be required to warrant that you are submitting your original work, that you have the rights in the work, that you are submitting the work for first publication in the Journal and that it is not being considered for publication elsewhere and has not already been published elsewhere, and that you have obtained and can supply all necessary permissions for the reproduction of any copyright works not owned by you.

1. What do we publish?

1.1 Aims & Scope

Before submitting your manuscript to Autism, please ensure you have read the Aims & Scope.

1.2 Article Types

The Journal considers the following kinds of article for publication:

5. Research Reports. Full papers describing new empirical findings;6. Review Articles

(a) general reviews that provide a synthesis of an area of autism research;

(b) critiques - focused and provocative reviews that may be followed by a number of invited commentaries, with a concluding reply from the main author.

Both full Research Reports and Review Articles are generally restricted to a maximum of 6,000 words, including all elements (title page, abstract, notes, tables, text), but excluding references. Editors may ask authors to make certain cuts before sending the article out for review.

7. Short Reports. Brief papers restricted to a maximum of 2,000 words with no more than two tables and 15 references. Short reports could include other approaches like discussions, new or controversial ideas, comments, perspectives, critiques, or preliminary findings. The title should begin with ‘Short Report’.

8. Letters to the Editors. Readers' letters should address issues raised by published articles. The decision to publish is made by the Editors, in order to ensure a timely appearance in print. Letters should be no more than 800 words, with no tables and a maximum of 5 references.

1.3 Writing your paper

The SAGE Author Gateway has some general advice and on how to get published, plus links to further resources.

1.3.1 Make your article discoverable

When writing up your paper, think about how you can make it discoverable. The title, keywords and abstract are key to ensuring readers find your article through search engines such as Google. For

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information and guidance on how best to title your article, write your abstract and select your keywords, have a look at this page on the Gateway: How to Help Readers Find Your Article Online.

2. Editorial policies

2.1 Peer review policy

Autism operates a strictly anonymous peer review process in which the reviewer’s name is withheld from the author and, the author’s name from the reviewer. The reviewer may at their own discretion opt to reveal their name to the author in their review but our standard policy practice is for both identities to remain concealed. Each new submission is carefully read by one of the Editors to decide whether it has a reasonable chance of getting published. If the Editor thinks it does not have this chance, at least one other Editor will be consulted before finally deciding whether or not to send the manuscript out for review. Autism strives to do this within two weeks after submission, so that authors do not have to wait long for a rejection. Feedback is also provided on how to improve the manuscript, or what other journal would be more suitable. Each manuscript is reviewed by at least two referees. All manuscripts are reviewed as rapidly as possible, and an editorial decision is generally reached within (e.g.) 6-8 weeks of submission.

As part of the submission process, you will be asked to provide the names of 2 peers who could be called upon to review your manuscript. Recommended reviewers should be experts in their fields and should be able to provide an objective assessment of the manuscript. Please be aware of any conflicts of interest when recommending reviewers. Examples of conflicts of interest include (but are not limited to) the below:

The reviewer should have no prior knowledge of your submission The reviewer should not have recently collaborated with any of the authors Reviewer nominees from the same institution as any of the authors are not permitted

Please note that the Editors are not obliged to invite/reject any recommended/opposed reviewers to assess your manuscript.

2.2 Authorship

All parties who have made a substantive contribution to the article should be listed as authors. Principal authorship, authorship order, and other publication credits should be based on the relative scientific or professional contributions of the individuals involved, regardless of their status. A student is usually listed as principal author on any multiple-authored publication that substantially derives from the student’s dissertation or thesis.

2.3 Acknowledgements

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, or a department chair who provided only general support.

Please supply any personal acknowledgements separately to the main text to facilitate anonymous peer review.

2.4 Funding

Autism requires all authors to acknowledge their funding in a consistent fashion under a separate heading. Please visit the Funding Acknowledgements page on the SAGE Journal Author Gateway to confirm the format of the acknowledgment text in the event of funding, or state that: This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.

Important note: If you have any concerns that the provision of this information may compromise your anonymity, you should withhold this information until you submit your final accepted manuscript.

2.4.1 National Institutes of Health (NIH) funded articles

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If you have received NIH funding for your research, please state this in your submission and if your paper is accepted by Autism an electronic version of the paper will automatically be sent to be indexed with the National Library of Medicine's PubMed Central as stipulated in the NIH policy.

2.5 Declaration of conflicting interests

Autism encourages authors to include a declaration of any conflicting interests and recommends you review the good practice guidelines on the SAGE Journal Author Gateway.

2.6 Research ethics and patient consent

Medical research involving human subjects must be conducted according to the World Medical Association Declaration of Helsinki

Submitted manuscripts should conform to the ICMJE Recommendations for the Conduct, Reporting, Editing, and Publication of Scholarly Work in Medical Journals, and all papers reporting animal and/or human studies must state in the methods section that the relevant Ethics Committee or Institutional Review Board provided (or waived) approval. Please ensure that you have provided the full name and institution of the review committee, in addition to the approval number.

For research articles, authors are also required to state in the methods section whether participants provided informed consent and whether the consent was written or verbal.

Information on informed consent to report individual cases or case series should be included in the manuscript text. A statement is required regarding whether written informed consent for patient information and images to be published was provided by the patient(s) or a legally authorized representative.

Please also refer to the ICMJE Recommendations for the Protection of Research Participants

2.7 Clinical trials

Autism conforms to the ICMJE requirement that clinical trials are registered in a WHO-approved public trials registry at or before the time of first patient enrolment as a condition of consideration for publication. The trial registry name and URL, and registration number must be included at the end of the abstract.

2.8 Reporting guidelines

The relevant EQUATOR Network reporting guidelines should be followed depending on the type of study. For example, all randomized controlled trials submitted for publication should include a completed CONSORT flow chart as a cited figure and the completed CONSORT checklist should be uploaded with your submission as a supplementary file. Systematic reviews and meta-analyses should include the completed PRISMA flow chart as a cited figure and the completed PRISMA checklist should be uploaded with your submission as a supplementary file. The EQUATOR wizard can help you identify the appropriate guideline.

The What Works Clearinghouse (WWC) guidelines should be followed when submitting in single-case design (SCD) and meet the standards outlined for internal validity of the SCD.

Other resources can be found at NLM’s Research Reporting Guidelines and Initiatives

3. Publishing Policies

3.1 Publication ethics

SAGE is committed to upholding the integrity of the academic record. We encourage authors to refer to the Committee on Publication Ethics’ International Standards for Authors and view the Publication Ethics page on the SAGE Author Gateway.

3.1.1 Plagiarism

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Autism and SAGE take issues of copyright infringement, plagiarism or other breaches of best practice in publication very seriously. We seek to protect the rights of our authors and we always investigate claims of plagiarism or misuse of published articles. Equally, we seek to protect the reputation of the journal against malpractice. Submitted articles may be checked with duplication-checking software. Where an article, for example, is found to have plagiarised other work or included third-party copyright material without permission or with insufficient acknowledgement, or where the authorship of the article is contested, we reserve the right to take action including, but not limited to: publishing an erratum or corrigendum (correction); retracting the article; taking up the matter with the head of department or dean of the author's institution and/or relevant academic bodies or societies; or taking appropriate legal action.

3.1.2 Prior publication

If material has been previously published it is not generally acceptable for publication in a SAGE journal. However, there are certain circumstances where previously published material can be considered for publication. Please refer to the guidance on the SAGE Author Gateway or if in doubt, contact the Editor at the address given below.

3.2 Contributor's publishing agreement

Before publication, SAGE requires the author as the rights holder to sign a Journal Contributor’s Publishing Agreement. SAGE’s Journal Contributor’s Publishing Agreement is an exclusive licence agreement which means that the author retains copyright in the work but grants SAGE the sole and exclusive right and licence to publish for the full legal term of copyright. Exceptions may exist where an assignment of copyright is required or preferred by a proprietor other than SAGE. In this case copyright in the work will be assigned from the author to the society. For more information please visit the SAGE Author Gateway.

3.3 Open access and author archiving

Autism offers optional open access publishing via the SAGE Choice programme. For more information please visit the SAGE Choice website. For information on funding body compliance, and depositing your article in repositories, please visit SAGE Publishing Policies on our Journal Author Gateway.

4. Preparing your manuscript for submission

4.1 Formatting

Autism asks that authors use the APA style for formatting. The APA Guide for New Authors can be found on the APA website, as can more general advice for authors.

4.2 Artwork, figures and other graphics

For guidance on the preparation of illustrations, pictures and graphs in electronic format, please visit SAGE’s Manuscript Submission Guidelines.

Figures supplied in colour will appear in colour online regardless of whether or not these illustrations are reproduced in colour in the printed version. For specifically requested colour reproduction in print, you will receive information regarding the costs from SAGE after receipt of your accepted article.

4.3 Supplementary material

This journal is able to host additional materials online (e.g. datasets, podcasts, videos, images etc) alongside the full-text of the article. For more information please refer to our guidelines on submitting supplementary files.

4.4 Terminology

Autism has researched and compiled their own Terminology Guidelineswhich all authors should follow.

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4.5 Reference style

Autism adheres to the APA reference style. View the APA guidelines to ensure your manuscript conforms to this reference style.

4.6 English language editing services

Authors seeking assistance with English language editing, translation, or figure and manuscript formatting to fit the journal’s specifications should consider using SAGE Language Services. Visit SAGE Language Services on our Journal Author Gateway for further information.

5. Submitting your manuscript

Autism is hosted on SAGE Track, a web based online submission and peer review system powered by ScholarOne™ Manuscripts. Visit http://mc.manuscriptcentral.com/autism to login and submit your article online.

IMPORTANT: Please check whether you already have an account in the system before trying to create a new one. If you have reviewed or authored for the journal in the past year it is likely that you will have had an account created. For further guidance on submitting your manuscript online please visit ScholarOne Online Help.

5.1 ORCID

As part of our commitment to ensuring an ethical, transparent and fair peer review process SAGE is a supporting member of ORCID, the Open Researcher and Contributor ID. ORCID provides a persistent digital identifier that distinguishes researchers from every other researcher and, through integration in key research workflows such as manuscript and grant submission, supports automated linkages between researchers and their professional activities ensuring that their work is recognised.

We encourage all authors to add their ORCIDs to their SAGE Track accounts and include their ORCIDs as part of the submission process. If you don’t already have one you can create one here.

5.2 Information required for completing your submission

You will be asked to provide contact details and academic affiliations for all co-authors via the submission system and identify who is to be the corresponding author. These details must match what appears on your manuscript. At this stage please ensure you have included all the required statements and declarations and uploaded any additional supplementary files (including reporting guidelines where relevant).

5.3 Permissions

Please also ensure that you have obtained any necessary permission from copyright holders for reproducing any illustrations, tables, figures or lengthy quotations previously published elsewhere. For further information including guidance on fair dealing for criticism and review, please see the Copyright and Permissions page on the SAGE Author Gateway

6. On acceptance and publication

6.1 Lay Abstracts

Upon acceptance of your article you will be required to submit a lay abstract of your article to the Social Media Editor, Laura Crane ([email protected]). Lay abstracts are brief (max 250 words) descriptions of the paper that are easily understandable. These abstracts will be made available to researchers and clinicians, as well as the general public (including individuals with autism spectrum disorders and their families). These abstracts should avoid both technical terminology and the reporting of statistics. Examples of lay abstracts are provided in recent issues of the journal.

6.2 SAGE Production

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Your SAGE Production Editor will keep you informed as to your article’s progress throughout the production process. Proofs will be sent by PDF to the corresponding author and should be returned promptly. Authors are reminded to check their proofs carefully to confirm that all author information, including names, affiliations, sequence and contact details are correct, and that Funding and Conflict of Interest statements, if any, are accurate. Please note that if there are any changes to the author list at this stage all authors will be required to complete and sign a form authorising the change.

6.3 Online First publication

Online First allows final articles (completed and approved articles awaiting assignment to a future issue) to be published online prior to their inclusion in a journal issue, which significantly reduces the lead time between submission and publication. Visit the SAGE Journals help page for more details, including how to cite Online First articles.

6.4 Access to your published article

SAGE provides authors with online access to their final article.

6.5 Promoting your article

Publication is not the end of the process! You can help disseminate your paper and ensure it is as widely read and cited as possible. The SAGE Author Gateway has numerous resources to help you promote your work. Visit the Promote Your Article page on the Gateway for tips and advice. In addition, SAGE is partnered with Kudos, a free service that allows authors to explain, enrich, share, and measure the impact of their article. Find out how to maximise your article’s impact with Kudos.

7. Further information

Any correspondence, queries or additional requests for information on the manuscript submission process should be sent to the Autism editorial office as follows:

Katie MarasDepartment of PsychologyUniversity of Bath, UKEmail: [email protected]

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Appendix B: Search terms used.

# Category Search Terms

1 Population autis* OR Asperger* OR “Pervasive Developmental

Disorder” OR ASD OR ASC

2 Age child* OR “school age” OR “school-age” OR “school

children” OR “school-children” OR pupil* OR

student* OR toddler* OR infant* OR teen*

3 Sense of self self-perception OR “perception of self” OR self-

awareness OR “awareness of self” OR self-

understanding OR “understanding of self” OR identit*

OR “self concept” OR “self-concept”

Study design

4 Qualitative data

collection

Interview* OR “focus group” OR diar*

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Appendix C: Quality Assessment Questions – (Adapted from Spencer et al., 2003)

1. How well are the study focuses and methods justified and explained in the context of

an existing body of theoretical/empirical knowledge?

2. How defensible is the research design?

3. How well defended is the sample design/target selection of cases?

4. How well was the eventual sample composition/case inclusion described?

5. How well was the data collection carried out?

6. How well has the approached to, and the formulation of, the analysis been conveyed?

7. How well are the contexts of data sources retained and portrayed?

8. How well has diversity or perspective and content been explored?

9. How well has detailed, depth and complexity (i.e richness) or the data been

conveyed?

10. How clear are the links between data, interpretations and conclusions, i.e. how well

can the route to any conclusions be seen?

11. How clear and coherent is the reporting?

12. How clear are the main assumptions/values/theoretical perspectives which shape the

form and findings of the study?

13. What evidence is there of attention to ethical issues?

14. How adequately has the research process been documented?

15. How credible are the findings?

16. How has knowledge/understanding been extended by the research?

17. How well does the study address its original aims and purposes?

18. How well was the scope for drawing wider inferences explained?

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Clinical Experience

Year I Placement

Adult Placement: Community Mental Health Recovery Service

I worked with adults aged 18-65 years old, presenting with a range of moderate to severe mental health difficulties in a community setting. I worked with people with a range of mental health diagnoses and difficulties including depression, anxiety, OCD, psychosis, emotionally unstable personality disorder, post-traumatic stress disorder, bipolar disorder and people with a history of traumatic experiences (child abuse, neglect), self-harm and suicidal thoughts and behaviors. I carried out assessments and interventions on an individual basis utilizing different therapeutic models such as CBT, DBT, ACT, CFT, Social Rhythm Therapy, Mindfulness as well as ideas from Schema focused therapy and holding in mind attachment theory. I also worked with my supervisor to carry out an assessment surrounding Family Intervention for Psychosis. In addition to this I co-facilitated two groups; a psycho-education CBT 6 week group. The group covered the following; the link between thoughts, feelings, behaviours and psychological sensations, behavioual experiments, the importance of self-care. I also facilitated a therapeutic group for people with Bi-polar disorder. This was an eight week program which included psycho-education, mindfulness techniques and strategies to manage difficulties associated with the diagnosis (such as lows and highs). While on this placement I completed two cognitive assessments. Additionally, I attended and contributed to different team meetings, including MDT meetings, psychology meetings, psychology locality meetings, complex case discussions and business meetings.

Year II placements

Child Placement: Children and Young Peoples Learning Disabilities Team

During this placement I worked with families of children aged 4-18 supporting them with a range of presentations (toileting, ASD, behavioural difficulties, depression, anxiety, selective mutism, and physical health conditions) as well as a learning disability. I provided consultation to schools, respite services and social care services surrounding children’s care. I worked with clients individually, utilising behavioural theory principles and CBT as well as with systems around the children and young people. In addition to this I developed a ran a parent group to support parents of anxious children, the group included psycho-education surrounding anxiety and some practical tips that parents could use, which were based on CBT principles. While on this placement I completed two neuropsychological assessments (utilising the WISC-V) and also used other formal measures such as the Connors Rating Scale and the Social Communication Questionnaire. I worked with the neighbouring Child and Adolescents Mental Health Team to carry out ADOS assessments.

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Older Adult Placement: Older Peoples Community Mental Health Team

As part of my work on this placement I worked with old people from the age of 65 years old with a range of different difficulties, such as, physical health issues, relationship and family difficulties, those who had received a diagnosis of dementia and people with mental health difficulties such as depression and anxiety. I carried out comprehensive neuropsychological assessments to determine the presence of a dementia, including differential diagnosis (dementia vs. depression) and determining the type of dementia. This involved gathering information from the individual and their family members, feeding back the results of the assessment to the individual and their family along side a Psychiatrists, as well as making onward referrals. I worked in a systemic way with individuals, couples and families to support acceptance and adaptation to worsening memory problems and dementia. During this placement I led and co-facilitated an ACT Group (which lasted 10 weeks). The group looked to support individuals in managing their difficulties while utilising an ACT therapeutic model. The group was evaluated using pre and post measures and qualitative feedback gathered from the individual in the final session. I also worked individually with clients using systemic theory and my practice was informed by attachment theory. In addition to this I utilised narrative approaches, CBT, ACT, CFT and mindfulness to support people in managing their distress.

Year III Placements

Specialist Placement: Paediatric Psychology Service

On my specialist placement I worked in a paediatric psychology service for children and young people with physical health difficulties, supporting them in understanding and coping with the psychological aspects of illness and medical procedures related to treatment. I worked with new born babies and their mothers and children up to the age of 18 years old with a range of difficulties including Sickle Cell and pain, medically unexplained symptoms, procedural anxiety, behavioural difficulties, toileting difficulties and ASC and children requiring cognitive assessments. I also worked with parents experiencing emotional distress and anxiety regarding their child’s illness and children who were ‘Looked After Children’ (LAC). I carried out assessments and interventions on an outpatient and inpatient basis, working individually with the children and their parents as well as working with the family unit as a whole. During this placement I utilised a number of models such as systemic family therapy, narrative therapy (including The Beads of Life), brief solution focused CBT, ACT, CFT and behavioural approaches alongside psycho education. In addition to this my work involved liaising and consulting with other services such as schools and social services to support children in being discharged from hospital and navigating ‘life after hospital’. I was part of Team around the child (TAC) meetings and supported schools in better supporting their pupils. I carried our two cognitive assessments; one with a young child with Sickle Cell Disease and the other with a young girl with cerebral palsy. I worked with different medical MDTs, individuals and families to support psychological thinking surrounding a diagnosis of medically unexplained symptoms. In addition to this, I delivered a presentation at the weekly

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psychology team surrounding how the compassionate mind model can be used at work and within teams. I also attended the team away day where considerable thought was given to service development and the future of the service. I attended in-house training surrounding the utility of EMDR, add additional info.

Learning Disability Placement: Community Learning Disability Health Care Team

During my placement within the Community Learning Disability Health Care Team I worked with adults between the age of 18-65 who had a recognised Learning Disability, physical health condition and sometimes a diagnosis of Autistic Spectrum Conditions. While on this placement I worked with numerous service users, the therapeutic work that I carried out involved assessments and interventions that were tailored to and adapted to meet individual needs. I took into consideration someone’s learning disability, communication difficulties and sensory difficulties. I carried out interventions on an individual basis as well as adopting systemic approaches: working with parents, siblings, staff at day services and supported housing and other members within the MDT to support service users. I utilised a range of model during this placement such as Narrative, systemic, CBT and behavioural therapy. Additionally, during this placement I also completed eligibility assessments, to determine if someone was eligible to use our services (ISAC-A Assessments and cognitive assessments). I support clients in accessing other services, such as IAPT. As part of developing my leadership skills I supported an assistant psychologist to learn more about cognitive assessments, and supervised her work on a joint piece of work. Moreover, while on this placement I ran staff team training surrounding Intensive Interaction at a support housing service and I ran a Compassionate Mind workshop using the compassionate mind model to think about staff wellbeing.

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PSYCHD CLINICAL PROGRAMMETABLE OF ASSESSMENTS COMPLETED DURING TRAINING

Year I Assessments

ASSESSMENT TITLEWAIS WAIS Interpretation (online assessment)Practice Report of Clinical Activity Assessment and formulation of a lady in her

late thirties whom has recently been diagnosed with Myalgic Encephalitis and is struggling with managing her emotions.

Audio Recording of Clinical Activity with Critical Appraisal

Critical appraisal of an individual CBT session with a female in her early forties presenting with low mood and some symptoms of anxiety.

Report of Clinical Activity N = 1 A report of clinical activity of work carried out with a man, in his early sixties, who wanted to understand his cycles of both mania and low mood following an admission to hospital.

Major Research Project Literature Survey What does the existing qualitative literature surrounding self-concepts and identity of children and adolescents who have been diagnosed with Autistic Spectrum Disorders tell us?

Major Research Project Proposal How do young children on the autistic spectrum make sense of themselves and others? A Thematic Analysis.

Service-Related Project Needs evaluation for training Service Users and Carers in Research Awareness.

Year II Assessments

ASSESSMENT TITLEReport of Clinical Activity – Formal Assessment

Report of Clinical Activity discussing an assessment conducted with Tom, a junior school boy with complex needs, to understand the role is cognitive ability has in his presenting problems.

PPD Process Account A process account of my experience of being part of a Personal and Professional Development group for the first two years of a Clinical Psychology Training Course.

Presentation of Clinical Activity A narrative therapy intervention to support Bill, a man in his late seventies, experiencing anxiety and low mood.

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Year III Assessments

ASSESSMENT TITLEMajor Research Project Literature Review A review of the literature examining the self-

concept and identity of children and adolescents with Autistic Spectrum Conditions.

Major Research Project Empirical Paper How do young children on the autistic spectrum make sense of themselves? A Thematic Analysis.

Report of Clinical Activity An integrative CBT approach with a young person presenting with anxiety.

statement of originalityepubs.surrey.ac.uk/852518/2/e-thesis.docx · web viewword count: 9,999...

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