A thematic analysis exploring social and emotional

aspects of self-understanding

in adolescents on the autism spectrum

Philip Martin

Submitted for the degree of Doctor of

Doctor of Psychology

(Clinical Psychology)

School of PsychologyFaculty of Arts and Human Sciences

University of SurreyGuildford, SurreyUnited Kingdom

October 2015

© Philip James Martin 2015

Abstract

People diagnosed with Autism Spectrum Conditions (ASC) are proposed to have

characteristic social and communication difficulties and are considered to have a

‘mindblindness’ that positions them as unable to infer the thoughts and feelings of

others as well as themselves. There is potential for this to impact upon processes

associated with self-understanding. In light of this, eight adolescents (11-16 years of

age) diagnosed with an ASC were interviewed to investigate their self-understanding.

They were asked about what makes them who they are, their relationships with

others, how this helps them make sense of themselves, and their experiences of

emotions. The participants were recruited from a mainstream school in the South

East of England that had a dedicated ASC unit.

Data were analysed using thematic analysis and two superordinate themes and five

subthemes were identified; Comparison to others is crucial for self-understanding

and The ASC unit was a place where the participants could be who they wanted to

be. Findings suggest that individuals recognised that they were different to others and

actively positioned their difference as positive. The ASC unit also appeared to

provide an environment for self-exploration, and the understanding and management

of emotions. Implications for policy and clinical practice are discussed, including the

recognition of the individual differences this population shows in the expression of

emotion and how this relates to the elicitation of support. These individual

differences are suggestive of a need for careful planning of individual support

packages. It is also argued that the positioning of an ASC as positive by these

participants is aided by the environment and peer relationships.

Acknowledgements

I would like to express my thanks and gratitude to everyone who contributed to the

development, implementation and writing of this research project as well as those

that contributed to my experience of training.

I would particularly like to thank:

The participants who kindly volunteered their time and thoughts

The school staff who also kindly volunteered their time and thoughts

Dr Kate Gleeson, Dr Emma Williams and Dr Harriet Tenenbaum for their

supervision and encouragement

The wider support team from the University of Surrey Clinical Psychology

training programme for their continued support and patience

The Service User & Carer Involvement at the University of Surrey for their

advice and input

Mimi Stermsek for helpful guidance

My fellow trainees Mary and James for support and guidance

Annabelle for encouragement, snacks, proof reading and help with formatting

dilemmas

My parents for a lifetime of support

Friends and family for their constant encouragement

University and placement supervisors

Contents

MRP Empirical Paper: ‘A thematic analysis exploring social and

emotional aspects of self-understanding in adolescents on the autism

spectrum’

1

Abstract 1

Introduction 2

Method 11

Research design 11

Participants 12

Semi-structured interviews 13

Ethical considerations 14

Analytical strategy 14

Results 16

Comparison to others is crucial for self-understanding 19

The ASC unit as a place where you can be who you want to be 25

Discussion 31

References 40

Table of appendices 47

Appendices 48

MRP Proposal 67

Literature review 80

Clinical experience 105

Table of assessments 108

'A thematic analysis exploring social and emotional aspects of

self-understanding in adolescents on the autism spectrum'

Abstract

People diagnosed with Autism Spectrum Conditions (ASC) are proposed to have

characteristic social and communication difficulties and are considered to have a

‘mindblindness’ that positions them as unable to infer the thoughts and feelings of

others as well as themselves. There is potential for this to impact upon processes

associated with self-understanding. In light of this, eight adolescents (11-16 years of

age) diagnosed with an ASC were interviewed to investigate their self-understanding.

They were asked about what makes them who they are, their relationships with

others, how this helps them make sense of themselves, and their experiences of

emotions. The participants were recruited from a mainstream school in the South

East of England that had a dedicated ASC unit.

Data were analysed using thematic analysis and two superordinate themes and five

subthemes were identified; Comparison to others is crucial for self-understanding

and The ASC unit was a place where the participants could be who they wanted to

be. Findings suggest that individuals recognised that they were different to others and

actively positioned their difference as positive. The ASC unit also appeared to

provide an environment for self-exploration, and the understanding and management

of emotions. Implications for policy and clinical practice are discussed, including the

recognition of the individual differences this population shows in the expression of

emotion and how this relates to the elicitation of support. These individual

differences are suggestive of a need for careful planning of individual support

1

packages. It is also argued that the positioning of an ASC as positive by these

participants is aided by the environment and peer relationships.

Introduction

Autistic Spectrum Conditions

People with Autistic Spectrum Conditions1 (ASCs) are proposed to have social and

communication difficulties that have the potential to influence the way in which they

understand themselves. This exploratory study investigates social and emotional

aspects of self-understanding in this population.

The prevalence of ASCs in the general population is considered to be roughly 1%

and is estimated to be the same for the child population (Baird et al, 2006; Baron-

Cohen et al, 2009). ASCs are characterised by the presence of social and

communication difficulties (including language delay) concurrent with

repetitive/stereotyped behaviours and/or narrow interests2 (World Health

Organisation, 2010). Although prevalence rates vary, this population has an

increased risk of depression and anxiety compared to the ‘typically developing’ (TD)

population (Hebron & Humphrey, 2014; Magnuson & Constantino, 2011; Van

Steensel, Bogals & Perrin, 2011). It is suggested that individuals with ASCs are

1 Although the term Autistic Spectrum Disorder (ASD) is widely used in research literature and in clinical settings, Baron-Cohen et al. (2009) advocate the term ASC because it is less stigmatising.2 For the purpose of this study ASC also includes Asperger’s syndrome, which is characterised by similar attributes to autism but there is no delay in language (World Health Organisation, 2010). Asperger’s Syndrome is no longer a stand-alone diagnosis in the diagnostic and statistical manual of mental disorders: DSM-5 (American Psychiatric Association, 2013), but for the purposes of this study it is included because of prevalence in the literature. Individuals with an ASC diagnosis can also be referred to as high functioning, which positions them as cognitively higher functioning than others diagnosed with an ASC (Carpenter, Soorya & Halpern, 2009).

2

unable to infer and reflect on the thoughts and feelings of others, as well as not being

able to understand their own mental states (Baron-Cohen, Leslie & Frith, 1985;

Perner, Frith, Leslie & Leekham, 1989), which links with the characterised social

and communication difficulties. This has been termed ‘mindblindness’ (Baron-

Cohen, 1995; Lombardo & Baron-Cohen, 2011) and suggests that individuals with

an ASC may not form a self-understanding and understanding of others in the same

way as may be expected of the TD population.

Self-understanding

Even within the literature about the self-understanding and identity of people who

are considered to be typically developing, the construct of self-understanding is

contested. A wide range of terminology is used, often interchangeably, to describe

various aspects of the self (Leary & Tangney, 2003). Leary and Tangney suggest that

an underlying quality of the term self is the human capacity for reflexive thinking.

This capacity encompasses two fundamental aspects of the self that have been

recognised since the dawn of Psychology (James, 1890) and are generally accepted

by theorists, that is, a subjective self and an objective self (Damon & Hart, 1988;

Miell & Ding, 2005). The I, or subjective self, sees the self as distinct from others,

having continuity and power in the world and the ability to reflect on experience. The

me, or objective self, represents the recognition of characteristics that can be

perceived by oneself or others and is more influenced by social factors (Damon &

Hart, 1988; Miell & Ding, 2005). If this is true then there is a suggestion that there

may be consequences for people with an ASC.

Reduced self-understanding is suggested to contribute to anxiety, depression and

delusional beliefs (Donahue, Robins, Roberts & John, 1993: Harrop & Trower,

3

2003). To gain an understanding of how individuals with an ASC may come to

understand themselves a systematic literature search was conducted (Martin, 2012,

unpublished literature review). The databases PsychINFO, psychARTICLES,

Psychology and Behavioural Sciences Collection, Medline, and Web of Knowledge

were searched for peer reviewed journals using a variety of terms relating to ASC,

self-understanding and mental health conditions (primarily anxiety and depression).

Relevant papers pertaining to this area appear to relate to two sets of evidence. They

seem to either be linked to deficits of the correlates of self-understanding in people

with ASCs in comparison to the TD population, or, to consider the experience of

having an ASC. The primarily experimental evidence considering correlates seems to

present mixed findings. Evidence suggests that some aspects of self-understanding,

such as self-recognition (e.g. Reddy, Williams, Costantini & Lang, 2010) and self-

presentation (e.g. Scheeren et al, 2010), are similar to the TD population. However,

other areas such as autobiographical memory, which is linked to having an

understanding of what has made us who we are, seem to be atypical (e.g. Bruck,

London, Landa & Goodman). Further evidence suggests that those with an ASC have

atypical objective and subjective self-understanding. When considering self-

understanding experimentally through the concept of the objective self, Lee and

Hobson (1998) demonstrate that individuals with an ASC generate fewer social self-

statements, but similar numbers of physical and active statements to matched

controls. From a subjective self perspective, Farley, Lopez and Saunders (2010)

suggest that those with an ASC are less able than matched controls to conceptualise

themselves from another’s perspective. The focus on specific correlates seems to

reduce individuals to abilities that are thought of as normal or disabilities that are

4

thought of as abnormal. Although valuable insights can be drawn from delineating

the specific difficulties that individuals with an ASC may experience, it obscures an

understanding of those individuals on their own terms, or, on how their self-

understanding may impact upon their well-being.

More recently researchers have endeavoured to understand the perspectives of

individuals with an ASC and how they understand themselves and their world. This

is perhaps driven by the complex individual differences that are seen in this

population. Happé and Roland (2008) suggest that autism is fractionable and the

three proposed core difficulties (social interaction, communication and

repetitive/stereotyped behaviours and narrow interests) manifest in varying severity.

Implications for diagnosis are suggested by this proposal as there is no single

underlying cause or distinct syndrome. Accepting individual differences, and hearing

the voices of those individuals, may then offer a different way of understanding

ASCs. The evidence seems to suggest there are several interconnected, but not easily

differentiated or understood, areas that appear to be important in the well-being of

individuals with an ASC: understanding of and feelings about diagnosis, feelings of

difference to others, peer relationships and mental health difficulties.

These areas are highlighted by Humphrey and Lewis (2008) who conducted a

qualitative study employing interpretive phenomenological analysis on data from

interviews and diaries, with 20 children and adolescents diagnosed with high

functioning ASCs, aged 11-17. The research was designed to gain an insight into

their experiences of mainstream school environments and the findings were related to

the development of strategies to enable learning. The results suggested that

5

individuals were at particular risk of experiencing feelings of anxiety and depression

as they negotiated their understanding of themselves in the context of a mainstream

school environment. The findings suggest that these feelings are affected by

relationships with peers. Those with good peer relationships appear to be more

positive about their diagnosis, themselves, and their experience of school. In contrast,

having poor peer relationships appeared to be linked to more negative views about

diagnosis, themselves, and their experience of school. Feelings of depression and

anxiety and problems with bullying were associated with this. Although Humphrey

and Lewis provide convincing evidence that good peer relations play an important

role in the well-being of young people with ASCs, these findings were one aspect of

wider discussion and they do not address the experience of those in other educational

settings. Their research did not focus on self-understanding, but it suggests that a

qualitative study of a similar nature may help provide a fuller picture of the role that

self-understanding might play in the well-being of young people with ASCs.

As argued earlier, social factors are suggested to influence self-understanding and

peer relationships may be considered to be an important social factor in young

people’s lives. Research suggests peer relationships in school are important to

individuals with an ASC, but difficult to establish and maintain (Carrington,

Templeton & Papinczak, 2003; Daniel & Billingsley, 2010). Hebron and Humphrey

(2014) suggest that adolescents in mainstream school diagnosed with an ASC are at

increased risk of mental health difficulties (anxiety, depression and lower self-

concept) and that this is related to problems with social relationships and

understanding the nature of ASCs. This research was designed to address a number

of limitations in previous research and does appear to report robust results that offer

6

comparison between groups (ASC, Special Educational Needs (SEN) and no SEN

(TD)).

The notion of feeling different to others and the impact on self-understanding is

highlighted by Bagatell (2007). This study describes a single case, ethnographic

study of a young adult (Ben, aged 21) diagnosed with an ASC, which used narrative

analysis of participant observation and in-depth, open-ended interviews. The study

asserts that an important difference can be seen in the way in which the individual’s

self-understanding is integrated. When this difference is thought of as problematic

and not conforming to the social norms, and the individual feels they have to ‘fit in’,

a great deal of anxiety and lack of self-worth are observed. When Ben was able to

recognise his difference as a difference and not as deviant, a more positive outcome

about self-understanding was observed and he found a valued identity as part of an

‘Aspie world’ (ASC). There is also indication that Ben had dilemmas about his self-

understanding and how much he fitted into both the Aspie world and other worlds

such as the ‘neurotypical’. The focus on a single case appears to have allowed in-

depth insight into the complex world of that individual and highlights that there were

important social factors impacting upon self-understanding.

Within this literature an important factor appears to be an understanding by those

with an ASC that they are different from peers/other people. Portway and Johnston

(2005) explored the risks of what they term a non-obvious disability. Life stories

were obtained from 18 young adults diagnosed with an ASC (aged 18 – 35) and their

parents. Constant comparative analysis (a technique drawn from grounded theory)

was used and the analysis became organised around the emerging category of ‘not

7

quite fitting in’. This was sub-categorised into every day and longer term risks

associated with marginalisation. Everyday risks in childhood were documented as

high and included misunderstanding others, being misunderstood, bullying, isolation,

loneliness and having few friendships. The problems were most obvious at school

and many of the participants were said to have increasingly perceived themselves as

different from their peers. Some of the longer term risks discussed relate to

underachievement, dependency upon parents and mental health problems, including

depression, anxiety, obsessions and expressions of suicide. Although these findings

appear to support Humphrey and Lewis (2008) and the impact of difference and poor

peer relationships on well-being, they were from a population that was purposefully

sampled through ASC charities. This recruitment strategy may indicate that

participants were those that were struggling and may only represent the voice of one

particular group.

Anxiety and depression

The above studies suggested that individuals diagnosed with an ASC may develop an

understanding of themselves that is often related to feeling different from their peers

and that this self-understanding can be negative. There is also the indication that this

can impact upon emotion and can lead to feelings of depression and anxiety.

Magnuson and Constantino (2011) offer a narrative review and Van Steensel, Bogals

and Perrin (2011) a meta-analysis of the empirical evidence. These studies offer

strong evidence, which is supported by others (e.g. Hebron & Humphrey, 2014; Kim

et al, 2000) to suggest that individuals with an ASC have an increased risk, when

compared with the TD population, of experiencing feelings of anxiety and

depression. It is suggested that as age increases, so does the risk of anxiety and

8

depression. This increase is postulated to occur as the individual gains an increased

self-understanding (Magnuson & Constantino, 2011). The prevalence rates are said

to be difficult to determine due to the overlap that is observed between the symptoms

of anxiety/depression and the characteristics of ASCs. Social withdrawal/isolation,

difficulty understanding and communicating feelings, and atypical affective changes

(such as increased aggression, irritability, agitation, and labile moods) may be

present, but may be difficult to distinguish from the ASC presentation of behavioural

and socioemotional characteristics associated with ASC. These reviews appear to

support other evidence that suggests feelings of difference and depression/anxiety

can arise, alongside developing self-understanding (Hebron & Humphrey, 2014;

Humphrey & Lewis, 2008).

Social processes and self-understanding

Although individuals with an ASC are suggested to have mindblindness and may be

thought to not fully understand how and why they may be different to others, there

does appear to be a level of understanding of difference (Bagatell, 2007; Humphrey

& Lewis, 2008; Portway & Johnston, 2005) and this suggests some social

comparison in order to understand the self. In the literature that focuses on the self-

understanding of the TD population, self-understanding and the forming of identity is

considered to follow a long developmental process of becoming self-aware (Damon

& Hart, 1982; Miell & Ding, 2005) and at the centre of many theories is the idea that

to know who we are requires that we know who we are not (Phoenix, 2002).

Categorising oneself is suggested to form the building blocks of identity; if a person

fits into a category that part of the self can become part of their identity (Phoenix,

2002). Categorisation about the similarities to and differences from other people can

9

occur (Damon & Hart, 1988; Miell & Ding, 2005) and identity is suggested to be a

balance between the self (personal needs) and “the other” (social pressures)

(Phoenix, 2002). This suggests interplay between individual and social factors.

Social constructionist theory argues that “the world we experience and the people we

find ourselves to be are first and foremost the product of social processes.”

(Nightingale & Cromby, 1999, p. 4). The use of language in these social processes is

suggested to be of upmost importance. Reality is considered to be socially negotiated

and the role of language is considered to determine the nature of experience (Raskin,

2002). Therefore, being labelled as ‘abnormal/disordered’ will logically be a

different experience to being labelled ‘exceptional/gifted’ for example. This example

is one that can be applied to young people with ASCs and the question remains about

the extent to which the processes of social comparison, and the social construction of

the understanding of the self, are the same for young people with ASCs.

Interactions with others, and their reactions to us, are suggested to impact on our

self-understanding. Cooley (1902) termed this the ‘looking glass self’ and refers to

the concept of understanding the self through the eyes of others. The above example

of being gifted/disordered would provide very different ways of understanding the

self in the eyes of others. Through interactions, individuals adopt the perspectives of

other people and become capable of reflecting on themselves (Mead, 1934). Life

narratives are continuously formed and adjusted (McAdams, 1999), suggesting a

fluid nature to self-understanding. Identity is not thought to be fixed, but socially

constructed and fluid within the boundaries of culture, context and language (Gergen,

1991).

10

Language, self-reflection, reflection about others and reflection on the thoughts of

others appear to be important factors in self-understanding. Bosacki (2000) suggests

that the ability to articulate the thoughts and intentions of others is related to the

ability to articulate the thoughts of the self. This self/other understanding ability is

suggested to be intricately intertwined and is constantly evolving through experience.

A logical corollary is that those that have difficulties with social relations and

communication may have difficulties with, and limited, self-understanding (Farley,

Lopez & Saunders, 2010; Frith & Happé, 1999). Therefore, an exploratory study

aiming to allow individuals diagnosed with an ASC3 to talk in their own language

about their understanding and experience of their social and emotional world was

conducted. A further aim was to consider how self-understanding may be related to

well-being and what theoretical psychological processes may be involved in both

self-understanding and well-being.

Method

Research design

Eight adolescents diagnosed with an ASC were interviewed twice using a semi-

structured interview schedule. The interviews were then analysed using thematic

analysis (Braun and Clarke, 2006).

Participants

Eight participants with a formal diagnosis of an ASC diagnosed by a professional,

namely psychiatrists and psychologists (educational or clinical), were recruited from

a mainstream school in the south of England. Although this was not formally

3 Individuals in this study were considered to be high functioning because they did not have significant learning difficulties with regard to academic work and were in the appropriate year group in school for their age. Herein individuals participating in the study will be referred to as diagnosed with an ASC.

11

verified, trust was placed in the schools verification through statements of special

educational need. Participants were aged between 11 and 16 (mean = 13.9 years,

standard deviation = 2), with seven males and one female. Within the school there

was a dedicated ASC unit staffed by experienced support workers and teachers who

facilitated the integration of about 20 mixed aged pupils who were diagnosed with an

ASC (overall school size = about 1200 pupils). Pupils attended the ASC unit for

registration and the majority of pupils attended lessons in the mainstream school,

with support of staff from the ASC unit if required, and would return to the ASC unit

between lessons and during breaks. At the end of the day, pupils attended a final

meeting in the ASC unit where pupil progress was discussed. The researcher spent

two mornings in the ASC unit, prior to interviews, to enable participants to get to

know him and build trust. This also enabled the researcher to gain an insight into

how the ASC unit worked in relation to the school and make observations.

Once the school had agreed to take part in the study, they sent out information sheets

(Appendix A) and consent forms (Appendix B) to parents of pupils that fulfilled the

inclusion criteria for the study. The inclusion criteria were that participants were

aged 11-16, had a formal diagnosis of an ASC, and were considered to be high

functioning. Potential consent was given by parents for ten pupils. A joint decision

between the manager of the ASC unit and the researcher meant that one of these

pupils was excluded from the study because of being highly distressed at the time the

study was being conducted. Individual participants were then approached by the

manager of the ASC unit to discuss the research and they were then given participant

information sheets (Appendix C). The researcher discussed the research further with

12

them and written consent (Appendix D) was then gained from the pupils themselves,

with one pupil declining to participate.

Semi-structured interviews

A semi-structured interview schedule was designed in consultation with a Clinical

Psychologist specialising in working with children and adolescents diagnosed with

an ASC (Appendix E). It was designed to allow participants to think about

themselves in relation to a number of factors, such as diagnosis, other people, and

their emotions. Participants were initially interviewed using the schedule and each

participant was then interviewed a second time, two months later. The second

interview was intended to allow participants to have had time to reflect on the first

interview and discuss any further thoughts they had had in relation to what had been

discussed, a method promoted by Kinavey (2006). This method was used because it

was thought this population may potentially find the topics abstract and building

rapport with the researcher may have been more difficult. The researcher listened to

the first interviews before conducting second interviews. Although no analysis was

done, discussions that appeared important or interesting to the participant and

researcher were explored through the generation of follow-up

questions/clarifications. The original questions were not used directly, but structured

the second interview because the follow-up questions related to the discussions

generated by the original questions. This enabled elements of the first interview that

related to participants talking about their emotions and their self-understanding to be

developed. Interviews were conducted in a room at the ASC unit that was familiar to

the participant, and members of staff that had good relationships with the participants

were available in case any difficulties arose during the interviews. All participants

13

appeared to enjoy taking part in the interviews and did not report any problems. No

problems were observed by the researcher or reported to have occurred by members

of the staff team. All participants also agreed to participate in the second interview.

Ethical considerations

The study was given ethical approval by The University of Surrey Ethics Committee

(Appendix F) prior to commencing data collection. The sensitive nature of the

material being discussed in this study meant that the researcher was acutely aware

that participants could potentially become distressed during the interviews when

discussing topics such as what made them become upset, sad, or worried. Standard

ethical practice in psychological research was followed (British Psychological

Society, 2010), such as promoting the participants’ right to withdraw and the

researcher was alert to the need to stop interviews if required and seek support from

members of staff.

Analytical strategy

The analysis followed the thematic analysis approach described by Braun and Clarke

(2006). Interpretive phenomenological analysis was also considered, but the intention

was to focus more on finding patterns within the group of participants rather than the

individual and the way they made sense of the experience (Chapman & Smith, 2002).

The data obtained were considered by the researcher to be rich enough for thematic

analysis. To ensure credibility of analysis, themes and interpretations were checked

by two supervisors and two researchers during group supervision of similar projects.

Consideration was given to use of participant checking, but due to mixed feedback

regarding this method and its impact on credibility (Goldblatt, Karnieli-Miller &

14

Neumann, 2011; Morse et al, 2002), it was not used. Yardley’s (2000) criteria for

quality in qualitative research, relating to sensitivity to context, commitment and

rigour, transparency and coherence and impact and importance, were also consulted

(Appendix G).

Data from interviews 1 and 2 with each participant were transcribed by the

researcher and combined to form 8 transcripts. This allowed familiarisation with the

data and initial codes were then generated (Appendix H for examples of text with

analysis). This involved going through the complete transcripts (interviews 1 & 2

combined) and performing line-by-line coding, where notes were made of anything

interesting in the data. The initial codes identified were cohesive and distinct and

indicated that no novel codes were being identified. Codes were initially identified at

a semantic level and helped to make sense of the data. The data were then reviewed

again with the research aims in mind and codes were noted that were related to these,

latent ideas were also coded for at this stage. From these codes, patterns were

identified that offered a wide range of initial potential themes. Thematic maps (Braun

& Clarke, 2006) were used to explore relationships between themes and to develop

candidate themes and sub-themes. The themes were then reviewed several times to

ensure that data within themes was cohesive and meaningful, whilst being distinct

from other themes.

Results

15

The results will be presented in narrative form, using quotes that highlight themes.

All names used are pseudonyms, // signifies that participant and researcher spoke at

the same time and I: denotes interviewer.

Two superordinate themes and related sub-themes were identified that appear to be

dynamically linked. The first superordinate theme of, ‘Comparison to others is

crucial for self-understanding’, appeared to influence and be influenced by the

second superordinate theme of, ‘The ASC unit as a place where you can be who you

want to be’. This is diagrammatically shown in Figure 1. All participants compared

themselves to others and this comparison appeared to facilitate self-understanding.

There was an understanding that they were individuals but that their individual

identity was influenced by social factors, that social identity changed within the

social environment, and that this change had an impact on their emotions.

Within the theme of ‘Comparison to others is crucial for self-understanding’,

participants discussed different elements of their social world that indicated how

their self-understanding was developed in relation to other people resulting in three

sub-themes; ‘Positive comparisons of oneself with those who do not have an ASC

enables us to feel unique’; ‘In some ways I am the same as those with an ASC, but I

am also different and better’; ‘Recognition of being the same, but different, across

diverse social contexts’. Participants made positive comparisons of themselves to

others who were not diagnosed with an ASC and this enabled a self-understanding of

being different and unique. They also compared themselves to others who were

diagnosed with an ASC, which enabled self-understanding through the recognition of

similarities but also difference and the difference positioned them as better than

16

others. Participants also recognised that they had an individual identity but that this

identity existed on a continuum and was adaptable. The self was fluid and altered in

different social contexts.

Participants described themselves as individuals but this individual self appeared to

be linked to and developed within the ASC unit. This understanding provides the

context for the second superordinate theme of, ‘The ASC unit as a place where you

can be who you want to be’. The ASC unit is in comparison to the main school

where they cannot fully express themselves and have to conform. Within this theme

two subthemes were identified; ‘The ASC unit allows us to be ourselves because we

feel understood’ and ‘The ASC unit allows us to express emotion’. Participants

discussed feeling understood in the ASC unit which enabled them to be themselves

and the unit also allowed the participants to express emotion which enabled

understanding of themselves and others.

17

Recognition of being the same,

Positive comparisons of

In some ways I am the same as those with an ASC, but I am

also different and better

Figure 1. Diagrammatic representation of superordinate themes and related

subthemes

Comparison to others is crucial for self-understanding:

18

Recognition of being the same,

Positive comparisons of

· Positive comparison of oneself with those who do not have an ASC enables

us to feel unique

The comparison of the self to others seemed to be generally split into two distinct

categories: comparison to those who were not diagnosed with an ASC and

comparison to those who were (mainly peers in both categories). Participants

perceived themselves to be distinctly different from people who were not diagnosed

with an ASC. The difference was positioned as a positive factor, with the self being

viewed as “awesome” and “special”, indicating a valued uniqueness. The ‘others’

were seen as boring and not as interesting and were looked upon less favourably than

others with an ASC. Language functioned to create the positions, with “normal”

being linked to “boring”, implying that ‘not normal’ is more interesting/unique and

therefore, good/positive.

Emily: it feels really weird because I see people in the main school and I see

people in here and in here it seems really normal for me cos where I’m like it

as well but in there it’s just it’s a weird place

I: The main school’s a weird place

Emily: We’re all different, they’re normal, it’s boring

I: Okay, so you feel different and you see those as normal

Emily: Yeah, I don’t see myself as normal, I see everyone else as different

I: Okay, and how does that feel to think of yourself in that way?

Emily: I d’know, I like being different to everyone else, I don’t like being the

same as what everyone else is, I prefer to be different…Yeah, I like to be

19

different cos I’m the only girl with diagnosed Autism in this whole school…I

like being different, I don’t like being like all the normal people…they’re

boring, we’re the different, we’re the awesome ones (laughs)

James: They’re weird [people in the main school]…they’re not as

interesting…I like being random and unpredictable

Harry: Erm, it makes you feel, erm, like, if you’re different, erm, it’s good,

because you’re like, I can’t explain it, it’s like, you’re more special.

Comparison to others not diagnosed with an ASC also led to some deeper thoughts

about self-understanding. In the following example there appear to be distinctions

being made about feeling different to those not diagnosed with an ASC and whether

this difference is unique to the group (those with an ASC in the ASC unit) or to the

participant, Will, as an individual specifically. There are delineations being made

between what applies to them as a group (ASC) and them individually – they do not

necessarily see themselves as representative of the group.

Will: Erm, yeah, but I mean it’s like what seems to be normal to me doesn’t

seem to be normal to them [non ASC], which I’m not sure whether that’s

something to do with me or something to do with a lot of the people here

[ASC unit]

Whilst participants overwhelmingly thought of difference as positive, they also

acknowledged that there were downsides. Difference was mainly positioned globally

20

in a positive way (“we’re awesome”), whilst difference that was thought of as

negative related to specific traits of their diagnosis, such as getting mad easily.

James:…I call it a blessing and a curse… cos some of the things I can’t do with

the disabilities… I can’t talk to people in the main school that well cos I don’t

really know them [in relation to ASC being the cause of this]

I: Okay, so did you feel a bit different to other people then

Oliver: Yeah. Yeah

I: Okay, but that difference seems like it’s pretty good in your eyes

Oliver: It is pretty good but still has its downsides once again

I: So it’s got its plusses and negatives

Oliver: Hmmm… getting angry really quickly even if you know someone’s just

joking

· In some ways I am the same as those with an ASC, but I am also different

and better

The participants spent a varied amount of lesson time in the ASC unit, some spent

the majority of their lessons there, some were supported by staff in lessons in the

main school and others independently participated in some lessons in the main

school. A major proportion of their free time was spent within the ASC unit with

others who were diagnosed with an ASC. This appears to have created a unique

environment for the participants to learn about themselves in. It was evident that the

participants recognised similarities in themselves to others diagnosed with an ASC,

21

but they also recognised difference. The difference appeared to relate to them being

better than others in the group, such as by being better at academic work, having

other diagnoses, or understanding themselves better.

Oliver categorises and compares himself to others with an ASC and thinks that he is

more advanced in this group because he is also diagnosed with ADHD (Attention

Deficit Hyperactivity Disorder):

Oliver: Well, me as fact, I’m like every other autistic person, I can get mad

easily, sometimes I just get, you know, just a tad bit annoyed with myself

sometimes, get impatient quite a lot and well, that’s just the basic autistics,

there are loads of advanced ones, like ADHD and other sorts of stuff, me

personally I’ve got ADHD.

Comparisons to others diagnosed with an ASC led to individual assumptions being

made explicit. Will portrays his internal mind to be unique to him and as something

that cannot be generalised to others, as well as suggesting that he has more insight

into his condition than some others who are diagnosed with it.

Will: I wouldn’t want to say either way because whatever way I say it might

just be again what how I would perceive it but not how others would perceive

it…I think compared to a lot of them I seem to sort of realise about autism I

mean how it affects me rather than sort of just have it remain unfounded

about why I do things… I think it’s erm to be honest it’s a bit too… broad a

22

term to be able to use as one condition because…it’s like generalising a

house and a castle as just a building.

He also appears to use metaphor to make the point that he is a more

complex/advanced version (a castle) of someone with an ASC.

Participants discussed the benefits of being similar to someone and how it can help

them relate to each other. Similar experience is suggested as leading to

understanding:

Emily: Well, no one’s actually ever like told me a lot about it, but I can

understand people who have Autism like I know like… they have different

ways of like dealing with things, like me, I just go into shut down and don’t

talk to anyone then there’s other people who can like go into like complete

mental moment and just throw things about, kicking, hitting, cos that’s what I

can get like as well

I: Right, do you think that because of the way you find some things difficult

that that maybe helps you try and understand other people?

Oliver: Yeah, people who don’t know, people who’re not on the autistic

spectrum might find it a bit hard to understand people who are.

· Recognition of being the same, but different, across diverse social contexts

23

An understanding of the self as being affected by different social contexts was

evident. Participants appeared aware that they changed to facilitate adaptation in

different social settings, but recognised that these were different aspects of the same

continuous self:

Harry:…sometimes I’m different at school, sometimes I’m different at home,

but I’m just the same person.

I: So you’re the same person, you just might be different in both situations?

Harry: Yeah.

I: And you don’t kind of change your behaviour in any different environments

Oliver: Nope, I just stay the same and try to adapt

I: You try to adapt. Do you feel sometimes that you have to try to adapt to the

world?

Oliver: Yep

I: Is it quite hard to sometimes?

Oliver: A bit

I: And do you think that the world doesn’t try to adapt to you very much

sometimes?

Oliver: Not usually

Most participants described themselves as adapting to social environments for the

benefit of the emotions of other people, being sensitive to the impact that their

behaviour might have upon others as well as what the mental state of the other

24

people might be. For example, Emily discusses adapting her behaviour from being

someone that expresses negative emotion at school, to not expressing this at home:

Emily:…cos my mum’s been like really stressed out because like, she’s

struggling with life because when, since she’s split up with my dad she’s

really struggled and like she’s got work and everything and so, yeah, I just

try to not put any more pressure on her sort of thing so she feels like she

doesn’t have to deal with me as well as her sort of thing… I just try and be

happy for everyone in the family, cos when it comes to family I’m not

bothered about myself, I’m more bothered about how my family feel than me

The ASC unit as a place where you can be who you want to be:

Participants talked about being part of a group ASC identity and formed friendships

which enabled them to be understood and not feel that they had to conform to social

norms that were difficult for them to understand. This sub-theme of ‘being

understood’ appears again to be dynamically linked to the first superordinate theme,

especially with reference to the positive positioning of themselves as different from

those not diagnosed with an ASC.

· The ASC unit allows us to be ourselves because we feel understood

The ASC unit appeared to be important to all the participants in the sense that it

allowed them to explore their understanding of themselves within a safe

environment. Participants talked about themselves as being able to become who they

want to be, apportioning support within the ASC unit as central to this process.

25

Friends in the ASC unit appeared to play a major role in them being able to

understand themselves and form a notion of who they are.

This is exemplified by Emily. She identifies aspects of the ASC unit, such as having

a laugh, feeling comfortable (she can be herself) and being able to talk, as

contributing to her being understood. This is in contrast to the mainstream where she

describes feeling highly anxious. She also illustrates the importance of sharing

similar experiences leading to understanding:

Emily: …without it [the ASC unit]… I’d be nowhere right now …probably

most of my happy memories actually happen in school, like being in here with

my friends, that’s when I have like a laugh and I feel really comfortable being

around them and just been able to talk…Yeah, we’re just like a group of

Autistic friends who just like, who seem to be able to talk about anything and

everything…I’m always like messing about with all my friends, it’s funny, cos

we’re like all different… one of my best friends is Harry… Yeah, he’s like my

best friend yeah, I’ve known him since I was in like year 2 or 3… Yeah, so, I

talk to him about anxiety cos he suffers with it as well

I: Right, okay, so it feels like he understands you maybe? // I see

Emily: // Yeah, he’s like the main friend I talk to about anxiety

Emily: Yeah, like I’m walking through the main school and my anxiety gets so

bad, I’m like looking at the floor feeling really dizzy, it gets to the point where

I’m like leaning up against a wall trying to walk through the corridor

[compared to the ASC unit, the main school leads to anxiety for Emily]

26

Henry discusses the ASC unit as supporting his education and makes his point by

comparing it to his previous school and not being understood there:

Henry: Yeah, it’s a lot better than what primary, than the primary school,

because when I went, in my primary school, I went there, me and a small

group of other kids, we were the first students with special needs at the school

so they were treating us very stereotypically so we never got a proper

education there

I: Oh I see, so they didn’t understand what your needs maybe were?

Henry: No

James discusses feeling he can be himself in the ASC unit and do the things that he

wants to do, whereas in the main school he cannot because of social pressures:

James: I have a guitar but… I can only play it… around in here [the ASC

unit] cos I don’t really care but out there there’s like they’re a bit naffy weird

so if I, I can’t only so over there I could only play it in not in (inaudible) in

one person I would probably not even allow someone one person to even hear

if they recorded me I would just instantly leave feel pressure and stop talking

cos I couldn’t talk

27

There is demonstration of the formation of close friendships in the ASC unit. They

were talked about in relation to their own happiness and how important it was to

them to help their friends be happy as well as demonstrating emotional connections

and empathy:

Charlie: Well I was really sad when Victor left… I was like crying 5 times in

the day… Oh no next question next question next question, ahhh [tears in

eyes]… Victor left and then well the unit just went blurrrgh

I: You like making sure everyone’s ok

James: And I kind of do it in a sneaky way like I make sure from a distance…

I think Emily she knows I try to help cos she’s not…the most confident person

so I’ve been trying to help raise the confidence which is working in a way so

that’s (inaudible) (makes noise / clicks with fingers)

I:…Erm ok so it sounds like you really try and make other people happy in a

way, do you feel happy in yourself do you think then?

James: I feel happy when they’re happy

· The ASC unit allows us to express emotion

A second sub-theme was identified that related to the ‘expression of emotion’.

Emotion was a difficult concept to discuss and understand, but participants were able

to indicate that they experienced difficult emotions and that the ASC unit facilitated

their expression. Participants acknowledged it was important for them to be able to

express their emotions, and although there were individual differences in how this

28

was achieved, people in the ASC unit were able to recognise when they were

experiencing difficult emotions. The expression of emotions seemed to be inherently

social and indicated the dynamic interplay with social context.

All participants were able to reflect that there were things that impacted upon their

emotions in positive and negative ways. The difficulty that was experienced with

speaking about emotions was often helped because of the support that was available

within the ASC unit, or just being able to let their emotions out in this context:

Emily: I got to point where I was just worrying about everything and I just

didn’t want to talk about it so I just used to sit in here on the corner and just

cry yeah cos in school I know I can let it out in school, cos at home I’ve gotta

be like don’t get upset…I’m feeling a lot better about myself now

I: Okay, and what do you think was kind of the thing that helped the most

through that time?

Emily: Being in school probably…Just knowing that I could talk to people

and let it out

Will discusses the support he receives from staff and the way he receives it in the

ASC unit as being very important for him when he is struggling emotionally. He

describes deliberately exaggerating his emotional expression so that someone will

talk to him about how he is feeling. This is different to how Emily describes

accessing support and the quotes that follow Will’s quotes also indicate individual

differences in how emotion is experienced and expressed by others:

29

Will: Erm, not really I just sort of I sort of like, I usually just sort of express

something else in a way that people can easily see that I would be sad so that

I can, sort of, talk about then, but I don’t usually initiate conversations

I: …so it’s kind of like the same as you when you’re feeling happy you feel

that people can tell that you seem happy and people can tell

Will:…But I mean I deliberately exaggerate erm, the erm, expressions that I

have so that…I’m sort of sort of saying that I want to talk

Acknowledgement was given to feeling emotions and these being picked up on in the

ASC unit, but that they could be missed because their expression is subtle. Emotions

were said to often not be explicitly expressed and may be observed as characteristics

of an ASC diagnosis:

Henry: No, because, the way I’m like when I’m upset, it’s more or less the

same way as like when I was sick or something, so they wouldn’t really think

anything of it

Harry: Yeah, I sometimes I just don’t tell people that I’m worried.

I: Ok, so do you sometimes feel that you bottle these feelings up?

Harry: Yeah.

I: Ok, and do they sometimes come out in other ways, the feelings…?

Harry: No

I: Ok, and how do you think people might know that you were feeling sad or

worried if you don’t tell them?

Harry: If I’m really quiet.

30

Social pressures, in this example in the form of embarrassment, are again discussed

as having an impact upon the individual. Emotion was also said to sometimes get to

the point where it could not be held in any longer. This is exemplified by Oliver:

I: … you find it difficult to speak to people about your worries sometimes

Oliver: A few times yeah, but at other times I’m just so worried that I don’t

care if I’m going to embarrass myself that I just go do it anyway… I also

worry that if I tell them that then they’ll tell their friends that they’ve had to

put up with a girl (accentuated) crying that (inaudible) and blaaa blaaaa

blaaaa blaaaa and it’s gonna pass along // and soon the whole, soon the

whole class and maybe even the whole school // will be able to just push me

around and go like, sissy!

I: // I see // uh huh. Ah, okay, so you worry about what other people are

gonna think of you?

Oliver: Yes I do

Discussion

The aims of this study were to explore how adolescents on the autism spectrum

understand and experience their social and emotional worlds and how their self-

understanding may be related to well-being and theoretical psychological processes.

Throughout the results it was apparent that participants were aware of themselves as

distinct individuals capable of unique thought and categorised themselves in

comparison to others. It was clear that participants were reflexive thinkers and that

this impacted upon their self-understanding – knowing who they were not helped

them to know who they were. Their self-understanding and identity were influenced

31

by social factors and were considered to be stable but adaptable to different contexts.

The ASC unit seemed to provide an environment that supported self-understanding,

whilst also allowing friendships to develop that gave the participants a group

identity. The group identity, that incorporated a notion of difference to others not

diagnosed with an ASC, was actively positioned positively and could be considered

to function as a means to develop improved self-esteem. Friendships also appeared to

be pivotal in feeling understood and gaining insight into the self. Participants

discussed emotion as being difficult to manage and they discussed a range of factors

that impacted upon them. These factors were inherently social and the ASC unit

again appeared to help participants manage their emotions.

Assumptions have perhaps been made about individuals diagnosed with an ASC not

understanding themselves in the same way as the TD population because of evidence

that depicts them as having ‘mindblindness’ (Baron-Cohen, 1995). Not being able to

infer the thoughts and feelings of others, as well as not having insight into their own

mind, could be considered to be reasons for their self-understanding being

considered atypical. However, the findings from this study are consistent with

Bagatell’s (2007) and Humphrey and Lewis’s (2008) findings and suggests that high

functioning individuals diagnosed with an ASC’s self-understanding is influenced by

social factors. The narratives put forward by participants were reflexive, appeared to

guide self-understanding, and were actively used to position the self positively.

Participants also demonstrated consideration of other people’s perspectives and

showed empathy and concern for others.

32

Gergen (1991) discusses social identities as fluid within the boundaries of culture,

context and language, which appears to fit with these findings as participants

described negotiating their social world. The context of the ASC unit appeared to be

one, amongst others, that provided a boundary for the participants that supported

understanding. The culture of diagnosing and attaching the label of ASC seems to

provide a boundary where the self has to be constructed as different from ‘normal’.

Participants interpreted this positively and the language used to do this highlights the

third boundary. The language used indicates that there were processes described

within social identity theory at work that can be used to interpret the findings.

Social identity theory views the self as composed of self-descriptions that we believe

define the social groups to which we belong (Phoenix, 2002). Group membership is

related to social identity because it helps us to understand what sort of people we are

and what kind of people we differentiate ourselves from (Mead, 1934; Tajfel, 1982;

cited in Phoenix, 2007). Although it is considered insufficient for others to define

them as a group, consensual definitions by others can become, over time, one of the

causal factors for a group’s self-definition (Tajfel & Turner, 1979). Participants

described themselves as different and this difference was because of the diagnosis of

ASC that has been attached to them, which is ‘institutionalised’ by their being in a

separate unit. Through embracing this label as a category that they belong to,

participants appeared to then use social creativity to value attributes assigned to the

group. Social creativity is suggested to be a way in which minority groups improve

their position and act to improve self-esteem (Tajfel & Turner, 1979, 1986).

Comparisons that have perhaps previously been seen as negative can be reframed as

positive, such as, the ‘Black is beautiful’ example cited by Tajfel and Turner (1979).

33

The salient dimension remains the same (skin colour) but the prevailing values

attached to it are changed. In the current study it could be argued that this is

exemplified by the salient dimension of difference remaining the same (ASC), but

the value attached to difference is positive – we are “awesome”, “interesting” and

“more special”. This is also taken further with the out-group (those not diagnosed

with an ASC) positioned as inferior, they are “weird”, “uninteresting” and “boring”.

Hogg and Reid (2006) describe categorisation that has optimal fit in a particular

situation as being psychologically salient. It becomes the basis of self-categorisation

and group identification, with in-group similarities and intergroup differences being

accentuated. This enhances perceived entitativity (group as pure entity) and

underpins context relevant group and intergroup behaviours. Prejudice is viewed as a

vehicle for bolstering self-esteem and is viewed as being inevitable, with out-groups

being positioned as inferior (Tajfel & Turner, 1979). The unit perhaps provides a

context for self-categorisation that is both physical and psychological. Pupils have to

have an ASC diagnosis to use the unit, and by positioning this as special, the

outgroup can be categorised as inferior.

Participants’ understanding and interpretation of the ASC label also appears to

influence self-esteem. Bagatell (2007) suggests that individuals can experience

positive self-esteem if identity emerges with a positive incorporation of an ASC

diagnosis. The findings of this study support this view and also support the notion

that difference can be seen as mostly positive difference rather than deviance. The

socially constructed identity incorporating difference as a positive appears to fight

back against the stigma that can be associated with an ASC diagnosis. Participants in

34

this study appear to position themselves as different and better than the TD

population. Conflict and prejudice literature suggests that prejudice is inevitable, but

so is resistance to it (Phoenix, 2002) and that conflict provides the ‘fire’ for social

change (Dixon, 2007). These processes were not directly discussed but can be

applied to the findings. Participants appeared to embrace the category they had been

labelled with and placed themselves in a group of socially valued individuals.

Discussion so far has focussed on evidence from the study that appears to support the

notion that self-understanding in this population can be considered to be consistent

with social constructionist theory (Nightingale & Cromby, 1999, p. 4). In the

introduction, a connection was made between the socially constructed ASC identity

and depression and anxiety. Research evidence (Humphrey & Lewis, 2008;

Magnuson & Constantino, 2011; Van Steensel et al, 2011) suggests that individuals

with an ASC are at increased risk of experiencing symptoms of anxiety and

depression and that this is influenced by peer relationships and interpretation of

diagnosis. Evidence also suggests that being diagnosed with an ASC increases the

risk of bullying and ostracism (Humphries & Lewis, 2008; Sebastian et al, 2009).

The findings of this study support the notion that individuals diagnosed with an ASC

have worries and concerns and that they struggle to express these. The difficulties

experienced in this area appear to have been helped by the ASC unit and peer

relationships, with both of these enabling emotions to be expressed and understood

and positive self-understanding to be constructed.

The participants also interpreted their diagnosis in a predominantly positive way,

which can be considered to support the idea that, through this positioning, self-

35

esteem can be increased. Bullying was not discussed as being a major concern by any

of the participants and it would appear that the context in which the individuals were

placed allayed this as a concern. Positioning the self as unique and superior to those

not diagnosed with an ASC may also work to bolster the self against bullying. It may

also be possible that whilst the participants actively positioned the group as better

than those not diagnosed with an ASC, this could be considered to have been

‘overexpressed’. It could instead be functioning to cover up feelings of low self-

esteem associated with minority group membership. Positioning the self as a superior

version of the group perhaps demonstrates that they were striving for increased self-

esteem. Future research may be able to address these interpretations through in-depth

consideration of individuals’ perceptions of their personal and group identities.

The current study also supports Magnuson and Constantino’s (2011) review relating

to the characterisation of depression in those diagnosed with an ASC. Participants in

this study discussed difficulties when talking about emotion. They suggested that

they may appear to be quiet or sick when worried, which perhaps has the potential to

be interpreted as characteristics of the individual encompassing their ASC diagnosis

and not as feelings of worry. It is suggested that it seems essential for people

supporting those diagnosed with an ASC to not make assumptions about the reasons

for behaviour (e.g. being quiet is a feature of ASC) and individuals are approached

and offered support.

Whilst there was little direct evidence of this in these participants, there may be

potential for feelings of depression and anxiety to develop. The ASC unit and peer

relationships as positive contextual factors appear to be noteworthy in possibly

assuaging feelings of depression and anxiety.

36

This study appears to offer support to theories of individuals with an ASC’s self-

understanding being influenced by social factors and that this can have an impact

upon their emotions (Bagatell, 2007; Humphrey & Lewis, 2008; Portway & Johnson,

2005), but there are limitations. The findings of this study may be limited in

transferability to other groups diagnosed with an ASC because they are situated in

what appears to be a very specific context. The participants were all considered to be

high functioning, so the findings may not relate to the wider ASC population, and the

ASC unit seemed to provide a great deal of support to the individuals that

participated. The ASC unit appears to be linked to and influence self-understanding

in these participants and so may not map onto how others may experience school, but

perhaps highlights the positive outcomes for these individuals given appropriate

support. However, the findings do complement those of Humphrey and Lewis

(2008), with their populations coming from four mainstream schools and so may

indicate commonalities in how this population understand themselves.

This study aimed to explore the social and emotional aspects of self-understanding in

adolescents diagnosed with an ASC, as literature pertaining to the views of those

individuals is scarce and understanding lacking. A social constructionist theory of

self has been helpful in making sense of the findings and this is important clinically

because of the potential to impact upon individuals’ self-esteem. Participants in this

study demonstrated that they internalise views of themselves as being different, but

that this was interpreted positively. This was possibly aided by the unique school

environment, but if this environment were not present, difference may be viewed

negatively, especially if bullying is a problem in the context.

37

The use of the term ‘condition’, instead of ‘disorder’ is also noteworthy in the

interpretation of difference. The findings appear to support the use of the term

‘condition’ as this is able to be positioned as advantageous, instead of ‘disorder’,

which I believe implicitly denotes disadvantage. For individuals that are labelled by

society as different to the ‘norm’, the use of the term ‘condition’ would seem more

likely to give those individuals the opportunity to form a positive self-understanding.

Although more work is required, this commentary is suggestive of clinical

implications. A positive self-understanding is likely to provide resilience to feelings

of depression and anxiety and the researcher would advocate the use of language that

is de-stigmatising. The participants have demonstrated in this study how language

can be used to position the self/group in a positive way and the same must be

considered of the power of language to do the opposite.

The difficulty that participants experienced with expressing emotion, and the overlap

with how emotion is expressed and ASC characteristics, are also clinically indicative.

It would seem that participants appreciated being spoken with about emotions. This

would appear to be pertinent in school environments, where there is the potential for

behaviour to be assumed to be characteristic of ASCs, and not considered to be

anything else. Gaining an understanding of individuals’ characteristics and

differences would seem to be important here, so that change from the ‘norm’, that

could be depression or anxiety, is noticed rather than potentially being assigned to

general ASC characteristics. Strang et al (2012) suggest that this group are not as

able to self-report anxiety and depression, which is perhaps supported to some extent

by these findings. However, the participants discussed a range of ways that they

38

attempt to elicit support, which demonstrates the need for individualised support in

this population that recognises difference from baseline behavioural presentation.

This highlights a further implication that may be thought of more in line with

education policy. The ASC unit was central to the participants’ lives and the findings

of this study, and seemed to provide an environment for self-understanding that

allowed them to be themselves, whilst learning about a world that is socially

complex and different to their ‘norm’. Although comparison with a mainstream

learning environment cannot be made, this kind of learning environment would

appear to provide person centred opportunity, which for this cohort seems central to

their long term development.

One of the aims of this study was to allow individuals diagnosed with an ASC to talk

in their own language about their understanding and experience of their social and

emotional world, which appears to have been met. The further aims of considering

how self-understanding may be related to well-being and what theoretical

psychological processes may be involved in both self-understanding and well-being

are more difficult to qualify. Tentative suggestions are made relating to how self-

understanding may be related to well-being, such as the notion of being different to

others and how this is interpreted, but no direct conclusions can be made. The

theoretical psychological processes that may be involved in well-being and self-

understanding are also discussed, but these are again tentative. I believe the

theoretical perspectives used to interpret the findings have been useful, but there may

be other perspectives that could offer different interpretations.

39

As discussed earlier, obtaining the views of individuals diagnosed with an ASC is an

emerging field of enquiry. I would suggest that it is highly important to gain these

views to provide support that is tailored to their needs and not geared towards

assumed differences from TD populations. As one of the participants from this study

said:

“Actually I was just thinking that I can’t believe that somebody actually needs autism

spectrum kids to actually answer questions and I was just thinking what we can do

for the world”.

References

American Psychiatric Association. (2013). The diagnostic and statistical manual of

mental disorders: DSM 5. Washington, DC: American Psychiatric Association.

Bagatell, N. (2007). Orchestrating voices: autism, identity and the power of

discourse. Disability & Society, 22, 413-426.

Baird, G., Simonoff, E., Pickles, A., Chandler, S., Loucas, T., Meldrum, D., &

Charman, T. (2006). Prevalence of disorders of the autistic spectrum in a

population cohort of children in South Thames: the Special Needs and Autism

Project (SNAP). Lancet, 368, 210-215.

Baron-Cohen, S., Leslie, A. M., & Frith, U. (1985). Does the autistic child have a

“theory of mind”? Cognition, 21, 37-46.

Baron-Cohen, S. (1995). Mindblindness: an essay on autism and theory of mind.

Cambridge, MA: London: MIT Press

40

Baron-Cohen, S., Scott, F, J., Allison, C., Williams, J., Bolton, P., Matthews, F, E.,

& Brayne, C. (2009). Prevalence of autism-spectrum conditions: UK school-based

population study. The British Journal of Psychiatry, 194, 500-509.

Bosacki, S. L. (2000). Theory of mind and self-concept in preadolescents: Links with

gender and language. Journal of Educational Psychology, 92(4), 709.

Braun, C. L., & Clarke, V. (2006). Using thematic analysis in psychology.

Qualitative Research in Psychology, 3, 77-101.

British Psychological Society. (2010). Code of Human Research Ethics. Leicester:

BPS. Retrieved from

http://www.bps.org.uk/sites/default/files/documents/code_of_human_research_

ethics.pdf

Bruck, M., London, K., Landa, R., & Goodman, J. (2007). Autobiographical memory

and suggestibility in children with autism spectrum disorder. Development and

Psychopathology, 19(1), 73-95.

Carpenter, L, A., Soorya, L., & Halpern, D. (2009). Asperger’s Syndrome and High

Functioning Autism. Pediatric Annals, 38, 1 (January).

Carrington, S., Templeton, E., & Papinczak, T. (2003). Adolescents with Asperger

Syndrome and Perceptions of Friendship. Focus on Autism and Other

Developmental Disabilities, 18(4), 211-218.

Chapman, E., & Smith, J. A. (2002). Interpretive Phenomenological Analysis and the

New Genetics. Journal of Health Psychology, 7(2), 125-130.

Cooley, C. H. (1902). Human Nature and the Social Order. New York, Scribner.

Damon, W., & Hart, D. (1982). The development of self-understanding from infancy

through adolescence. Child Development, 53, 841-864.

41

Damon, W., & Hart, D. (1988). Self-understanding in childhood and adolescence.

New York: Cambridge University Press.

Daniel, L. S., & Billingsley, B. S. (2010). What Boys with and Autism Spectrum

Disorder Say About Establishing and Maintaining Friendships. Focus on Autism

and Other Developmental Disabilities, 25(4), 220-229.

Dixon, J. (2007). Prejudice, conflict and conflict reduction. In W. Hollway, H.

Lucey, & A. Phoenix (Eds), Social Psychology Matters (pp 145-172).

Maidenhead: Open University Press.

Donahue, E. M., Robins, R. W., Roberts, B. W., & John, O. P. (1993). The divided

self: concurrent and longitudinal effects of psychological adjustment and social

roles on self-concept differentiation. Journal of Personality and Social

Psychology, 64(5), 834-846.

Farley, A., López, B., & Saunders, G. (2010). Self-conceptualisation in autism:

Knowing oneself versus knowing self-through other. Autism, 14(5), 519-530.

Frith, U., & Happé, F. (1999). Theory of mind and self-consciousness: what is it like

to be autistic? Mind & Language, 14(1), 1-22.

Gergen, K, J. (1991). The saturated self: Dilemmas of identity in contemporary life.

New York: Basic Books.

Goldblatt, H., Karnieli-Miller, O., & Neumann, M. (2011). Sharing qualitative

research findings with participants; study experiences of methodological and

ethical dilemmas. Patient Education and Counseling, 82(3), 398-95.

Happé, F., & Ronald, A. (2008). The ‘Fractionable Autism Triad’: A Review of

Evidence from Behavioural, Genetic, Cognitive and Neural Research.

Neuropsychology Review, 18(4), 287-304.

42

Harrop, C., & Trower, P. (2003). Why does schizophrenia develop at late

adolescence? A cognitive-developmental approach to psychosis. Chichester:

Wiley.

Hebron, J., & Humphrey, N. (2014). Mental health difficulties among people on the

autistic spectrum in mainstream secondary schools: a comparative study. Journal

of Research in Special Educational Needs, 14(1), 22-32.

Hogg, M. A., & Reid, S. A. (2006). Social Identity, Self-Categorization and the

Communication of Group Norms. Communication Theory, 16, 7-30.

Humphrey, N., & Lewis, S. (2008). ‘Make me normal’: The views and experiences

of pupils on the autistic spectrum in mainstream secondary schools. Autism, 12,

23-46.

James, W. (1890). Principles of Psychology. New York: Holt.

Kim, J. A., Szatmari, P., Bryson, S. E., Streiner, D. L., & Wilson, F. J. (2000). The

prevalence of anxiety and mood problems among children with autism and

Asperger syndrome. Autism, 4(2), 117-132.

Kinavey, C. (2006). Explanatory models of Self-Understanding in Adolescents Born

with Spina Bifida. Qualitative Health Research, 16(8), 1091-1107.

Leary, M. R., & Tangney, J. P. (2003). The Self as an Organising Construct in the

Behavioural Sciences. In M. R. Leary, & J. P. Tangney (Eds), Handbook of Self

and Identity (pp 3-14). New York: The Guildford Press.

Lee, A., & Hobson, R. P. (1998). On developing self-concepts: A controlled study of

children and adolescents with autism. Journal of Child Psychology & Psychiatry

& Allied Disciplines, 39(8), 1131-1144

43

Lombardo, M, V., & Baron-Cohen, S. (2011). The role of the self in mindblindness

in autism. Consciousness and Cognition: An International Journal, 20 (1),

130-140.

McAdams, D, P. (1999). Personal narratives and the life story. In Pervin, L, A., &

Johns, O, P. (Eds). Handbook of personality: Theory and research (2nd Ed), 478

500. New York, Guildford Press.

Magnuson, K. M., & Constantino, J. N. (2011). Characterization of depression in

children with autism spectrum disorders. Journal of Developmental & Behavioral

Pediatrics, 32, 332-340.

Martin, P. (2012). Development of sense of self in adolescents with an Autistic

Spectrum Disorder and relation of this to co-morbid anxiety and depression.

Unpublished literature review submitted in partial completion of Doctorate in

Clinical Psychology. University of Surrey.

Mead, G. H. (1934). Mind, Self and Society. Chicago, IL, University of Chicago

Press.

Miell, D., & Ding, S. (2005). The early development of identity. In S. Ding, & K.

Littleton (Eds), Children’s Personal and Social Development (pp 125-139).

Milton Keynes: Blackwell Publishing Ltd in association with The Open

University.

Morse, J. M., Barrett, M., Mayan, M., Olson, K., & Spiers, J. (2002). Verification

Strategies for Establishing Reliability and Validity in Qualitative Research.

International Journal of Qualitative Methods, 1(2), 13-22.

Nightingale, D. J., & Cromby, J., (Eds). (1999). Social Constructionist Psychology:

A Critical Analysis of Theory and Practice (p. 4). Buckingham: The Open

University Press.

44

Perner, J., Frith, U., Leslie, A. M., & Leekham, S. R. (1989). Exploration of the

autistic child’s theory of mind: Knowledge, belief and communication. Child

Development, 60, 688-700.

Phoenix, A. (2002). Identities and diversities. In D. Miell, A. Phoenix & K. Thomas

(Eds), Mapping Psychology 1 (pp 43-104). Bath: The Bath Press.

Phoenix, A. (2007). Intragroup processes: entitativity. In D. Langdbridge & S. Taylor

(Eds), Critical Readings in Social Psychology (pp103-132). Maidenhead: Open

University Press.

Portway, S. M., & Johnson, B. (2005). Do you know I have Asperger syndrome?

Risks of a non-obvious disability. Health, Risk & Society, 7, 73-83.

Raskin, J, D. (2002). Constructivism in Psychology: Personal Construct Psychology,

Radical Constructivism, and Social Constructionism. American Communication

Journal, 5 (3), 1-25.

Reddy, V., Williams, E., Costantini, C., & Lang, B. (2010). Engaging with the self:

Mirror behaviour in autism, down syndrome and typical development. Autism,

14(5), 531-546.

Scheeren, A. M., Begeer, S., Banerjee, R., Terwogt, M. M., & Koot, H. M. (2010).

Can you tell me something about yourself? Self-presentation in children and

adolescents with high functioning autism spectrum disorder in hypothetical and

real life situations. Autism, 14(5), 457-473.

Sebastian, C., Blakemore, S-J., & Charman, T. (2009). Reactions to ostracism in

adolescents with autism spectrum conditions. Journal of Autism and

Developmental Disorders, 39, 1122-1130.

45

Sofronoff, K., Dark, E., & Stone, V. (2011). Social vulnerability and bullying in

children with Asperger syndrome. Autism, 15, 355-372.

Strang, J. F., Kenworthy, L., Danilos, P., Case, L., Wills, M. C., Martin, A., &

Wallace, G. L. (2012). Depression and anxiety symptoms in children and

adolescents with autism spectrum disorders without intellectual disability.

Research in Autism Spectrum Disorders, 6, 406-412.

Tajfel, H., & Turner, J. (1979). An integrative theory of intergroup conflict. In W. G.

Austin & S. Worchel (Eds), The Social Psychology of Intergroup Relations

(pp 33- 47). Monterey, CA: Brooks/Cole.

Tajfel, H., & Turner, J. (1986). The social identity theory of intergroup behaviour. In

S. Worchel & W. G. Austin (Eds), Psychology of Intergroup Relations (pp 7-24).

Chicago, IL: Nelson Hall.

Van Steensel, F. J. A., Bogals, S. M., & Perrin, S. (2011). Anxiety disorders in

children and adolescents with autistic spectrum disorders: A meta-analysis.

Clinical Child and Family Psychology Review, 14, 302-317.

World Health Organisation. (2010). Mental and behavioural disorders. International

Statistical Classification of diseases and Related Health Problems 10th Revision

(ICD-10) Version for 2010. Retrieved form:

http://www.who.int/classifications/icd/en/

Yardley, L. (2000). Dilemmas in qualitative health research. Psychology & Health,

15(2), 215-228.

46

Table of Appendices

Appendix A Parent information sheet

Appendix B Parent consent form

Appendix C Participant information sheet

Appendix D Participant agreement form

Appendix E Interview schedule

Appendix F Ethical approval

Appendix G Ensuring quality of research and integrity of analysis

Appendix H Example transcripts with analysis

Appendix I Reflective statement

47

Appendix A. Parent information sheet

Self-understanding in adolescents on the autism spectrum

Information SheetI am inviting your child and their school to take part in a research study on the nature of self-understanding in adolescents on the autism spectrum. Please read the information below as you need to understand why the research is being done and what it would involve for your child should you choose to take part.

What’s the purpose of the study?

The study will investigate how adolescents on the autistic spectrum see themselves, how they think others see them and how they feel about themselves. Other the past few decades a lot of research has investigated the ability of individuals on the autistic spectrum to understand other people’s feeling, intentions and behaviours. Little is known however about what young people on the autistic spectrum understand about themselves. This is an important area of investigation because what we think about ourselves is thought to be linked to emotional well-being.

Who is organising this research?The research is being carried out by Philip Martin, a Trainee Clinical Psychologist at the University of Surrey, under the supervision of Dr Emma Williams (whose specialist area is autism spectrum disorders) and Dr Kate Gleeson, University of Surrey.

Why has my child been invited?

You have been contacted along with other parents as your child has been diagnosed as being on the autistic spectrum, and is currently attending a mainstream/special school.

Does my child have to take part?

No. It is your choice, in discussion with your child. You can use the information provided here to come to a decision and you are encouraged

48

to talk to your child to make sure that they are happy to participate. Both I and my supervisor will welcome any further questions that you might have about the study (see contact details below). You and your child are free to withdraw at any time, without giving a reason.

Where can I get more information?

If you have any questions, please contact:

Researcher: Philip Martin

Contact: p.j.martin@surrey.ac.uk

Research supervisor: Dr Emma Williams

Contact: e.i.williams@surrey.ac.uk; 01483686909

Research supervisor: Dr Kate Gleeson

Contact: kate.gleeson@surrey.ac.uk

What will taking part involve for my child?

Your child will be asked to attend two interviews lasting approximately 20-30 minutes. During the interviews your child will be asked questions about how they would describe themselves, how they think other people see them, what they think about being on the autism spectrum and how they feel about these things.

I will phone you the day after both interviews to answer any queries that may have arisen following it.

Will the information be kept confidential and secure?

The interviews will be recorded and transcribed by me. This information will be kept confidential and will be stored securely. The recording and the transcription will be anonymised so that no one apart from me will know the name of your child. They will be kept in a locked filing cabinet in the room of the principal investigator, and destroyed after 5 years.

I will discuss aspects of the study with Dr Williams (Principle Investigator), Dr Gleeson and other members of the research team, but they will not know your child’s name. The school will not have access to the recordings, transcriptions.

49

Are there possible disadvantages to taking part?

Most people who participate in this kind of study find talking about themselves and their experiences helpful. However, it is possible that talking about what they think about themselves might raise issues that your child finds distressing. Before undertaking the interview, arrangements will be made for your child to talk to a familiar and trusted member of the school staff who is aware of the nature of the study should they find the process upsetting. You and the school will also be informed if your child becomes upset.

What will happen if I don’t want to carry on with the study?

If you, your child, or your child’s school changes their mind about taking part in the study, they may do so at anytime, without giving a reason.

What if there is a problem?

If you want to make a complaint about anything to do with the study, please contact myself in the first instance. I will be happy to try to resolve any complaints you may have with the study. If you do not feel it appropriate to address your concerns with me directly then please contact Dr Emma Williams who is the Research Supervisor on this project at the University of Surrey (e.i.williams@surrey.ac.uk ) (Tel. 01483 686909) Any complaints will be taken seriously and any issues arising will be addressed.

What will happen to the results of the research study?

The findings of this study will be written up and submitted as a doctoral thesis. Findings may also be submitted for publication to various academic journals. Your child will not be identified in any part of the reports. Feedback on the overall results will available on request. This is expected to be available from July 2014.

Who has reviewed the study?

This research has been given a favourable ethics opinion by the Faculty of Arts and Human Sciences Ethics Committee, University of Surrey to protect you and your child’s safety, rights, wellbeing and dignity. It is carried out according to the code of conduct specified by The British Psychological Society www.bps.org.uk

Decision about taking part:

If you would like your child to take part, please sign the consent forms enclosed and return to the school office in the envelope provided.

50

Thank you for your time.

51

Appendix B. Parent consent form

Ethics CommitteeParental Consent Form

I the undersigned voluntarily agree for my child to take part in the study on ‘The development of a sense of identity in adolescents with an Autistic Spectrum Condition’

I have read and understood the Information Sheet provided. I have been given a full explanation by the investigators of the nature, purpose, location and likely duration of the study, and of what my child will be expected to do. I have been advised about any possible ill-effects on my child’s well-being which may result. I understand that if there are any concerns regarding the wellbeing of my child that arise either during, or as a result of this study, these will be referred to a member of the school staff in addition to myself. I have been given the opportunity to ask questions on all aspects of the study and have understood the advice and information given as a result

I understand that all personal data relating to volunteers is held and processed in the strictest confidence, and in accordance with the Data Protection Act (1998). I understand that the interview recordings and photographs will be retained under secure conditions for the duration of the study, and will be destroyed after 5 years. I agree that I will not seek to restrict the use of the results of the study on the understanding that my child’s anonymity is preserved.

I understand that I and my child can decide to withdraw from the study at any time without needing to justify the decision and without prejudice, but that once the interview material has been anonymised and used within written up material, withdrawal of my child’s data will not be possible. This is envisaged to be by 30/09/2013.

I confirm that I have read and understood the above and freely consent to my child participating in this study. I have been given adequate time to consider my child’s participation and agree to comply with the instructions and restrictions of the study.

Name of child (BLOCK CAPITALS)……………….……………………………………………….

Name of parent/guardian………………………………………………………………………….…

Signed………………………………………..………………………………………………………..

Date…………………………………………………………………………………………………….

52

Appendix C. Participant information sheet

Be part of my study!

My name is Philip Martin. I am a trainee Clinical Psychologist from the University of Surrey (in Guildford). I am working on a project and I am we are interested in how students of your age feel and think about themselves.

I want to know about you, how you would describe yourself and what makes you feel happy or sad. Pupils usually find it helpful to talk about themselves, but there is a possibility that you might feel uncomfortable or upset about a particular question. If so, you do not need to answer it and we will move on, or you can stop.

If you want to take part in this study I will sit down with you in a quiet space in school and we will talk for about 30 minutes about these things. If that goes well I want to come back in two months time and talk to you again. If

53

you don’t mind, I will bring a laptop, voice recorder and record what you say. I will record our chat because I need to listen to it later.

Nobody else will hear it, apart from my teacher at University, and we won’t put your name on it or on any report we write about it (this is so that no-one will know that it is you that has taken part).

You do not have to take part in this study, but if you are not happy when we are talking, you can tell me and we will stop. If you want to ask me a question, you can ask at any time.

Do you have any questions about what I have said so far?

54

Appendix D. Participant agreement form

Participant agreement form I have been told what the study is about. I have had the chance

to ask any questions I might have had and they were answered.

I have been told that usually students find it helpful to talk about themselves, but that there is a possibility I may be upset by a particular question. If so, I understand that I don’t need to answer it

I have been told what I will need to do, how long it will take and where the study will take place.

I have been told that the conversation will be recorded and I am happy with this.

I have been told that no one other than the people doing the research will know that it is me who has taken part.

I have been told that all the information I give will be kept safe, so no one who is not working on the study will be able to look at it.

I understand that I can stop at any time and the researcher won’t mind.

Would you like to be part of my study?Tick the box you want.

YES NO

55

Appendix E. Interview scheduleInterview Schedule

Please can you tell me about yourself?Prompts: Age, where lives, family, friends, likes/dislikes, ambitions, hobbies, favourite things, school, home

Tell me more about the things you like to do?Prompts: Everyday activities, why like them/to do them, on own/with other people

Tell me more about the things you don’t like to do?Prompts: Everyday activities, why dislike them/to do them, on own/with other people

Please can you tell me what you understand about ASC (use the term that they are used to)?

Prompts: explain it to me, when were you told about it, did it change your life in anyway etc? Who told you?

What do you think of ASC?Prompts: Positive/negative, happy/sad, effect on things likes/dislikes doing, similarities/differences to other people

Has your opinion of ASC always been the same?Prompts: When first told, now

What do people you know think of ASC?Prompts: Family, friends, people at school, change over time

Can you tell me about your friends/people that you like?Prompts: people spend most time with, why, what do you like about them, similarities/differences

What do these people know about ASC?Prompts: How would they describe you?

Tell me about people that you don’t like?Prompts: don’t like spending time with, why?

What makes you happy?Prompts: understanding of feelings, when have felt the happiest

Do you tell people that you’re happy? How would they know?

56

What makes you sad/worried?Prompts: (nervous, anxious, annoyed, angry, frustrated)understanding of feelings, when have felt the worst

Do you tell people if you’re sad or worried? How would they know?

Have you ever wanted to tell someone that you are sad or worried but not known how to?

Are you the same at school as you are at home?Prompts: Behaviour, way speak to people

If you could change three things in your life, what would they be?

57

Appendix F. Ethical approval

58

Appendix G. Ensuring quality of research and integrity of analysis

Yardley’s (2000) criteria for quality in qualitative research were consulted to ensure

quality of research and integrity of results. This summary outlines (where not already

discussed in the main body of the report) how that was attempted to be achieved:

Sensitivity to context

The research is based in theoretically relevant literature and a methodical

consideration of the literature was performed before commencing the study. A wide

range of population specific factors were considered before undertaking the research,

such as the difficulties that participants might find with interviews and their reactions

to emotive questions. Consulting a Clinical Psychologist specialising in working with

young people diagnosed with an ASC enabled this process. Careful consideration

was given to the setting, the influence this had on the participants and how it

contributed to the lives of the participants and the results. This study employed the

use of two interviews, which seemed to allow the participants to reflect upon the

issues under discussion and allowed rapport to develop, which could be considered

positive in any participant population, but particularly this one. However, the gap of

two months between interviews was perhaps too long as participants’ memory of the

discussion had diminished.

Commitment, rigour, transparency and coherence

The topic of research was engaged with in depth through the literature review and

group supervision with two supervisors and two researchers engaged in similar

projects. The supervision enabled ASCs to be considered broadly, whilst also

59

focussing on specifics of the individual projects. This enabled an enrichment of this

research project through the consideration of a wide variety of knowledge, whilst

also honing, and providing valuable insights into, the specific area of this research.

The researcher considered the data to be rich enough for analysis and the group

supervision enabled this consideration to be checked. The supervision also allowed

the themes and interpretations to be checked through each researcher bringing

excerpts of their analysis and the group discussing their thoughts. The supervision

allowed each researcher the freedom to think about themes, consider different

interpretations and then focus on the final themes that were considered to be cohesive

and meaningful. Themes and analysis that were considered to be influenced by

researcher specific factors (e.g. personal experience) were able to be discussed and

the actuality of them being relevant decided upon. The interpretation of the themes

in relation to theoretical perspectives was also aided by this process. The

methodological and theoretical competence and skill of the researcher was always

examined, considered and developed through the supervision by experts in the fields

of research technique and ASCs.

The descriptions and arguments have attempted to be as clear and transparent as

possible. The theoretical application of the method (Braun & Clarke, 2006) was

followed as closely as possible, allowing for individual interpretation of the method,

and expert guidance from supervisors on its application.

Impact and importance

The research is considered to develop the current body of literature pertaining to

ASCs and provide a novel perspective with regard to how those with an ASC may

60

understand themselves. Consideration is given to the relevance of this research for

the research population and clinical and educational settings.

Yardley, L. (2000). Dilemmas in qualitative health research. Psychology & Health,

15(2), 215-228.

61

Appendix H. Example transcripts with analysis

62

63

64

Appendix I. Reflective statement

As with all qualitative methodology, the researcher’s personal experience,

knowledge and cultural context are influential on the research process and

interpretation of results. Throughout the research process I attempted to be aware of

these factors and reflected on how I could influence the study.

I had two placements at Child and Adolescent Mental Health Services during my

clinical training, one of which was a specialist placement and involved working as

part of the ASC assessment team. Through this experience I became aware that this

client group could find interviews difficult and it often took longer to build rapport

than with other clients. This influenced my decision to spend time in the ASC unit

prior to interview and conduct two interviews with participants. I believe this

strategy allowed participants to build confidence and trust when spending time with

me and allowed them to talk more freely than if I had conducted a one off interview

with no prior introductions.

The experience also demonstrated to me the impact that a label can have. Clients

could be distressed when I initially met with them and discussed the purpose of the

assessment and what it would mean to be given a label that is often termed a

disorder. Discussing this with them and negotiating possible diagnosis as signifying

difference and not disorder and as a way to help understand their needs helped

decrease their anxiety and develop their understanding of what diagnosis could

mean. I held this in mind when conducting interviews and was aware that I could use

leading questions, to clarify my understanding, which could influence participants’

65

interpretation of their diagnosis. Through holding this in mind, listening to the

interviews, and reading transcripts I believe that I was able to set aside this clinical

style.

Conducting a literature search prior to the research taking place meant that I had an

understanding of the theoretical context and the implications of this for the

participant population. As noted earlier, being assessed can be a difficult experience

for young people, particularly when a diagnosis can be given following assessment.

The literature appeared to show that this population are often experimented on and

this was something I considered to be important to try and avoid during interviews. I

was aware that at times this meant that the interviews were perhaps a little light-

hearted and I needed to bring the participants back to topic and get them to think

seriously about topics.

Finding the balance between supporting participants to feel comfortable by using

humour and talking about what they wanted to talk about, whilst attempting to

discuss emotive topics, was difficult to do and involved a constant ‘dance’ between

the two positions. There were times during the interviews when I was aware

participants were discussing difficult topics and could become distressed, at these

times the participant was not pushed to divulge information that could be too

distressing for them. The impact of the emotive position was highlighted on one

occasion by a participant who became tearful and asked to move on to the next

question. Again, I think that my clinical skills helped with this and the use of two

interviews allowed topics to be developed further if they seemed to have been

important but did not have enough attention given to them in the first interview. I

66

was also aware that I could use reflective listening skills, which, if I did not also

maintain a position of curiosity, had the potential to summarise participants’ thoughts

rather than allowing them to develop. Being aware of these factors allowed the

topics to develop and listening to the first interview also allowed my awareness to

develop and my technique to improve.

The literature also highlighted how the term ‘disorder’ can be interpreted as negative

and not the same as ‘normal’ people. Comment from the field of disability studies

(see Molloy & Vasil, 2002) implies that the pathologising of difference, through

social construction of difference being negative, can create difficulties for those with

difference. The use of labels that position individuals as disordered is one that I do

not consider to be useful and so perhaps has the potential to influence results. My

interview technique and interpretation of results may have elicited more positive

responses/instances relating to being diagnosed with an ASC due to my therapeutic

background. I attempted to set aside my therapeutic style of promoting wellbeing,

allowing discussion to be led by what was important to the participant, and the

credibility of themes and interpretations were checked.

Reference

Molloy, H., & Vasil, L. (2002). The social construction of Asperger syndrome: the

pathologising of difference? Disability & Society, 17, 659-669.

67

Major Research Project Proposal

Exploring emotional processes surrounding making sense of self in

adolescents diagnosed with a high-functioning autism spectrum

condition

Background and theoretical rationale

Social constructionist theory posits that individuals exist in a social world and build

up a sense of identity from interaction with others. Through interactions, individuals

adopt the perspectives of other people and become capable of reflecting on

themselves (Mead, 1934).

Individuals with an Autism Spectrum Condition (ASC) have diagnostic

characteristics that leave them profoundly impaired in understanding minds (Baron-

Cohen et al, 1985). Those with an ASC are commonly thought of as not having a

‘theory of mind’ and it is suggested that individuals with ASC’s are unable to infer

the thoughts and feelings of others, as well as not being able to understand their own

mental states (Perner et al, 1989). Theory of mind could be considered to be crucial

in the formation of identity and building a sense of self for individuals with ASC’s

may therefore not follow the trajectory of the ‘typically developing’ population, with

early description of ASC characteristics positioning those with an ASC as having an

aloneness and inferred egocentrism (Kanner, 1943).

68

Literature pertaining to the development of a sense of self in individuals with ASC’s

and seeking the perspective of those individuals is scant. It is an emerging field,

however, with recent research seeking the views of individuals with ASC’s and

highlighting that social challenges have a large impact on adults with an ASC and

their sense of self (Muller et al, 2008). Humphrey & Lewis (2008) conducted a

qualitative study, employing interpretive phenomenological analysis with interviews

and diaries, with individuals with high functioning ASC’s aged 11-17. They

discussed their experiences of school and the findings suggest that those individuals

were at particular risk of experiencing feelings of anxiety and depression as they

negotiated their sense of self. The findings also suggest that these feelings are

mediated by relationships with peers and how the individuals with an ASC interpret

their diagnosis, as being either positive or negative.

Reviews of the empirical evidence (Van Steensal etal, 2011 and Magnuson &

Constantino, 2011) suggests that individuals with an ASC have an increased risk,

when compared with the ‘typically developing’ population, of experiencing feelings

of anxiety and depression. It is suggested that as age increases so does the risk of

anxiety and depression, with it being postulated that this occurs as the individual

gains an increased self-understanding. The prevalence rates are said to be difficult to

determine due to the overlap that is observed between the symptoms of

anxiety/depression and the characteristics of ASC’s. As individuals with ASC’s grow

older evidence indicates that there is an increased risk and prevalence of

depression/anxiety, and individuals’ qualitative reports highlight that as a sense of

self emerges with age, so do feelings of difference and depression/anxiety

(Humphrey & Lewis, 2008).

69

Strang et al (2012) utilised parent reports to investigate prevalence rates of anxiety

and depression in young children (aged 6-12) and adolescents (aged 13-18). Their

findings indicate that younger children do have symptoms of anxiety/depression, but

that they are perhaps not aware of the impact of their social exclusion or are unable

to explicitly express their views. Research by Foley Nicpon et al (2010) presents

quantitative data from individuals with high functioning ASC’s, their parents and

their teachers that supports the notion that individuals with an ASC do experience

feelings of anxiety/depression but they are unable to express or do not recognise that

they have psychosocial difficulties.

The notion of a positive/negative sense of self appears to be strongly linked to social

interactions with peers. Sofronoff et al (2011) highlight that individuals with an ASC

are vulnerable to bullying and this is supported by Humphrey & Lewis’s research

that indicates individuals with ASC’s are socially naive and prone to being bullied.

Sebastian et al (2009) indicate that individuals with an ASC are able to recognise

ostracism, but do not perhaps have the ability to express the impact of this upon their

mood. This possibly indicates the internalisation of feelings of anxiety/depression but

due to the overlap with symptoms of anxiety/depression and the characteristics of

ASC’s, the effect is potentially not observed or expressed.

Internalisation of negative experiences has the potential to cause feelings of

anxiety/depression, which as the individual’s sense of self develops as a construct of

these negative views and negative feelings about the self, again has the potential to

exponentially affect a negative sense of self. Positive experiences of peer interactions

70

appear to offer individuals the potential to gain resilience from anxiety/depression

(Humphrey, & Lewis, 2008), as well as being able to position and gain an emergent

identity encompassing ASC as a positive aspect of the self (Humphrey, & Lewis,

2008; Bagatell, 2007).

The emergent identity that encompasses an insight into the realities of ASC

characteristics does appear to be one that is then difficult to integrate into socially

accepted norms. Integration of the individual’s sense of self as being different to

others appears to be extremely important. When this difference is thought of as

problematic and not conforming to the social norms a great deal of anxiety and lack

of self-worth are observed (Humphrey, & Lewis, 2008; Bagatell, 2007), whereas

when an individual is able to recognise their difference as a difference and not

deviant a more positive outcome may be observed.

In conclusion, it appears that individuals with an ASC do form a sense of self in

relation to their social environment but characteristics of ASC’s make negotiation of

this complex in unpredictable social environments and with special consideration

given to the observed social vulnerability in these individuals. There appears to be an

inextricable link between the development of sense of self, risk of developing anxiety

and depression in relation to this, and a potential for the two constructs to interplay to

affect the experience of each for individuals with an ASC. The proposed research

aims to explore the emotions surrounding making sense of the self for individuals

with an ASC and to gain further understanding of what it means for those individuals

whilst furthering the current research in this field.

71

Research Question

Exploring emotional processes surrounding making sense of self in adolescents

diagnosed with a high-functioning autism spectrum condition.

Method

Participants

The aim is to recruit 8-10 participants with an ASC. Participant number in qualitative

research is variable, with recent research in this field varying between 1 (Bagatell,

2007) and 25 (Portway & Johnson, 2005). With consideration given to time scales

and being able to access as broad as possible a cross section of individuals in this

population, 8-10 participants is felt to be the optimum number for this research

project (Braun & Clarke, 2006). The participants will be adolescents aged 11-16 with

a formal diagnosis of an ASC and will be in full time education in mainstream

schools. The inclusion criteria will be having a diagnosis of High-Functioning

Autism or Asperger syndrome made by a relevant professional (Clinical Psychologist

or Psychiatrist), they must be between the ages of 11-16 years, be aware of their

diagnosis and be able to speak English as their first language.

Recruitment will be from schools in the Sussex / Surrey regions. Contact has been

made with a mainstream school in the region that has an ASC unit and currently has

14 pupils who fit the inclusion criteria. The Educational Psychologist from the school

has provided initial permission for recruitment from this school, providing relevant

research approval is obtained for the study and gave positive feedback for a high

expected response rate. Further recruitment will be from other schools from the

geographical regions to meet the required recruitment level.

72

Design

The study is a qualitative design employing semi-structured interviews.

Measures/Interviews/Stimuli/Apparatus

Parents of pupils who fulfil the inclusion criteria will be sent a pack including an

information sheet and consent form for themselves and for their child. They will be

invited to speak with the researcher if they have any further questions and if their

child wishes to and consents to participate and they consent to their child

participating, they will be asked to return the relevant consent forms.

The interview schedule will follow that detailed in Appendix E (see above). This is

currently a working document as the researchers are going to run focus groups with

adults with an ASC, in October / November 2012, to discuss the project and the

interview schedule. This is to be done in conjunction with the University of Surrey

Additional Learning Support (ALS) centre. The researchers are also going to attend

some training on working with students with an ASC in September 2012 that is to

run by the ALS. The training and focus group will provide feedback on the project

and the interview schedule, which is likely to mean this will be subject to change.

Procedure

Recruitment: Initially schools in the Surrey and Sussex regions will identified and

contacted via telephone / email to ascertain the potential for participant recruitment

and their potential interest in participating in the research. The schools that indicate

an interest will be sent a copy of the research proposal, including the participant /

parental information and consent forms, and will be invited to discuss the project

73

further with the researchers. Formal permission will then be sought from the school

for their permission for the research to run from their school and for a link person

from the school to be identified to assist in the research. It is intended that the

researchers will spend time in the school to observe the school systems, how the staff

interact and work with students and for participants to become familiar with the

researchers. This will be discussed with the schools and action taken appropriately.

Once permission from the schools is obtained the parents of prospective participants

will be sent an information pack, either directly or via the school, and asked to return

consent forms if their child wishes to participate and they consent to this.

Interviews: Interviews will be conducted in the school that the participant attends, in

a quiet room that the participant is familiar and comfortable with. The participant

will be asked if they would like support during the interview from a member of staff

that they are comfortable with and if so they will be invited to attend the interviews.

The initial interview will follow the schedule outlined in Appendix E and questions

will be read out to the participant, with explanation provided if required and follow-

up questions that relate to the answers provided will be used. The second interview

will follow the same procedure as the initial interview, with an agreed date and time

being set with the participant and the school.

Interviews are envisaged to be around 30 minutes in duration and will be recorded

using two digital voice recorders (in case of malfunction) to allow for later

transcription. Verbal consent will also be obtained at the start of each interview to

ascertain each participant’s continued willingness to participate in the study. The

74

school will be liaised with to agree upon dates and times of initial and secondary

interviews.

Ethical considerations

Adolescents with an ASC are a potentially vulnerable group and consideration

therefore needs to be given to ethical issues. Participants must be aware of their

diagnosis and this is made clear in the participant and parental consent forms. Verbal

consent will be sought prior to commencing each interview and the participant will

also be asked to tell someone that they are comfortable with and trust at any time

during the study if they want to withdraw. Formal written consent will stipulate all

relevant issues that may arise for the individuals and will be sought from both

participants and individuals. As the participants will be high-functioning, it is

considered that they will be able to provide informed consent.

The interviews have the potential to cause distress during or after as sensitive

information will be discussed. Participants will be made aware that they can stop the

interview at any stage and speak with someone that they trust and will be made

aware that they can speak with the researcher following the interview. Prior to

interview participants will be asked to identify a member of school staff that they are

familiar with and trust who can be contacted should they become distressed, with an

agreement being formed with the staff member as to their availability and ways to act

if this was to occur. Participants will also be able to invite a member of staff to attend

the interview with them if they wish.

75

Confidentiality will be ensured by anonymising all data collected and using

pseudonyms in any published material, this will include participants’ name, school

and any names that they provide during data collection. Minimal personal

information (age, gender) will be stored and all stored data will be kept in password

protected files. Paper copies of data and audio files will be stored, in accordance with

the Data Protection Act (1998), in a locked cabinet in the office of the principal

project supervisor and will be destroyed after 5 years.

Name of ethics committee

University of Surrey Ethics.

R&D Considerations

Not applicable.

Proposed data analysis

It is proposed that interviews will be transcribed data analysis will utilise thematic

analysis (Braun & Clarke, 2006). This will involve transcription of the recorded

interviews, line by line coding of text to derive initial codes and identification of

patterns to produce themes. Themes will be reviewed to ensure date in them is

cohesive and meaningful, whilst being distinct from each other and credibility of the

analysis will be ensured by each of the researchers checking the analysis.

Service user and carer consultation/involvement

Barbara Riddell, Coordinator of Service User & Carer Involvement at the University

of Surrey, has been involved in consultation with regard to the purpose and utility of

the research and of potential problems and solutions pertaining to this.

76

A member of the Service User & Carer Involvement programme, with personal

experience of ASC’s, was present during presentation of the project and provided

feedback pertaining to the purpose and utility of the project. Advice has been sought

from the ALS and further consultation on the project will be sought through focus

groups with adults with an ASC that are being arranged with the assistance of the

ALS.

Feasibility issues

Participant recruitment: It may not be possible to recruit the desired number of

participants within the study timeline from mainstream schools. Special schools that

provide full time schooling primarily for adolescents with an ASC in the regions

described will be contacted and invited to participate in the research. If recruitment

of the required number of participants is still not possible from these sources, third

sector organisations will be approached (such as Autism Sussex). Participants may

then be asked to participate that are above the age range and asked to reflect

retrospectively upon their experiences.

Participants may wish to withdraw their consent. If this occurs, further participant

recruitment will follow the strategy outlined above providing there is sufficient time

in accordance with the study timeline. As this is a qualitative study the impact upon

analysis is not envisaged as being detrimental and can be discussed in the context of

research design.

77

Dissemination strategy

The research will be submitted for publication in relevant peer reviewed journals

such as “Autism” and “Journal of Autism and Developmental Disorders”. The

findings from the research will also be made available to the participants, parents,

schools and other relevant organisations, such as the National Autistic Society.

Study timeline

MRP course approval August 2012

Ethics submission September / October 2012

Focus groups November 2012

Start data collection January 2013

Complete data collection June 2013

Start data analysis March 2013

Complete data analysis September 2013

Draft introduction May 2013

Draft method June 2013

Draft results November 2013

Draft discussion December 2013

Submit complete draft to supervisor January 2014

Signatures

Trainee: Date:

Dr Emma Williams: Date:

Dr Kate Gleeson: Date:

78

References

Bagatell, N. (2007). Orchestrating voices: autism, identity and the power of

discourse. Disability & Society, 22, 413-426.

Baron-Cohen, S., Leslie, A. M., & Frith, U. (1985). Does the autistic child have a

“theory of mind”? Cognition, 21, 37-46.

Braun, C. L., & Clarke, V. (2006). Using thematic analysis in psychology.

Qualitative Research in Psychology, 3, 77-101.

Foley Nicpon, M., Doobay, A. F., & Assouline, S. G. (2010). Parent, teacher, and

self perceptions of psychosocial functioning in intellectually gifted children and

adolescents with autism spectrum disorder. Journal of Autism and Developmental

Disorders, 40, 1028-1038.

Humphrey, N., & Lewis, S. (2008). ‘Make me normal’: The views and experiences

of pupils on the autistic spectrum in mainstream secondary schools. Autism, 12,

23-46.

Kanner, L. (1943). Autistic disturbances of affective contact. Nervous Child, 2,

217-250.

Magnuson, K. M., & Constantino, J. N. (2011). Characterization of depression in

children with autism spectrum disorders. Journal of Developmental & Behavioral

Pediatrics, 32, 332-340.

Mead, G. H. (1934). Mind, Self and Society. Chicago, IL, University of Chicago

Press.

Muller, E., Schuller, A., & Yates, G. B. (2008). Social challenges and supports from

the perspective of individuals with Asperger syndrome and other autism spectrum

disabilities. Autism, 12, 173-190.

79

Perner, J., Frith, U., Leslie, A. M., & Leekham, S. R. (1989). Exploration of the

autistic child’s theory of mind: Knowledge, belief and communication. Child

Development, 60, 688-700.

Portway, S. M., & Johnson, B. (2005). Do you know I have Asperger syndrome?

Risks of a non-obvious disability. Health, Risk & Society, 7, 73-83.

Sebastian, C., Blakemore, S-J., & Charman, T. (2009). Reactions to ostracism in

adolescents with autism spectrum conditions. Journal of Autism and

Developmental Disorders, 39, 1122-1130.

Sofronoff, K., Dark, E., & Stone, V. (2011). Social vulnerability and bullying in

children with Asperger syndrome. Autism, 15, 355-372.

Strang, J. F., Kenworthy, L., Danilos, P., Case, L., Wills, M. C., Martin, A., &

Wallace, G. L. (2012). Depression and anxiety symptoms in children and

adolescents with autism spectrum disorders without intellectual disability.

Research in Autism Spectrum Disorders, 6, 406-412.

van Steensel, F. J. A., Bogals, S. M., & Perrin, S. (2011). Anxiety disorders in

children and adolescents with autistic spectrum disorders: A meta-analysis.

Clinical Child and Family Psychology Review, 14, 302-317.

80

Development of Sense of Self in Adolescents with an Autistic Spectrum Disorder

and Relation of this to Co-morbid Anxiety and Depression: A review of the

literature

Abstract

Sense of self and construction of identity is affected by the social world in which

individuals exist and the internalisation of the views of others and perceptions of the

self in relation to this. Individuals with autistic spectrum disorders are considered to

have difficulties in social interaction, communication and imagination, domains that

may be thought of as essential for the social construction of identity. A review of

literature pertaining to individuals with an ASD’s sense of self and the relation of

this to development of anxiety and depression revealed mixed findings.

The view of the self was mediated by social factors, with peer interactions and the

positioning of having an ASD as a positive or negative part of the self appearing to

be crucial meditating factors, and this possibly begins at an earlier age then expected

for the discussed population. Individuals with an ASD have an increased risk to

suffering with symptoms of anxiety and depression and these co-morbid difficulties

appear to inextricably linked with the developing sense of self. Research into sense

of self in individuals with an ASD is an emerging field and this review attempts to

integrate current findings in this area with occurrence of anxiety and depression in

this population. Recommendations for future research are also made.

81

1. Introduction

From a social constructionist standpoint individuals do not exist in a vacuum and

build up a sense of identity from interaction with others in a social world. Cooley

first introduced the term the ‘looking glass self’ and refers to how perceptions of

ourselves are formed through interactions with others and their reactions (Cooley,

1902). Through interactions, individuals adopt the perspectives of other people and

become capable of reflecting on themselves (Mead, 1934).

Individuals with an Autistic Spectrum Disorder (from here on in termed ASD,

including Asperger’s syndrome unless specified) have diagnostic characteristics that

leave them profoundly impaired in understanding minds (Baron-Cohen et al, 1985).

Those with an ASD are commonly thought of as having a ‘theory of mind’

impairment and it is suggested that individuals with ASD’s are unable to infer the

thoughts and feelings of others, as well as not being able to understand their own

mental states (Perner et al, 1989). With this being viewed as a crucial ability in the

formation of identity, building a sense of self for individuals with ASD’s may

therefore be considered to be a complex process, with early detailing of ASD

characteristics positioning those with an ASD as having an aloneness and inferred

egocentrism (Kanner, 1943).

There appears to be a paucity of literature pertaining to the development of a sense

of self in individuals with ASD’s, but it is an emerging field, with recent research

seeking the views of individuals with ASD’s and highlighting that social challenges

have a large impact on adults with an ASD and their sense of self (Muller et al,

2008). Further comment from the field of disability studies has also implied that the

82

pathologising of difference, through social construction of difference being negative,

has the potential to create problems for individuals with ASD’s when attempting to

form an identity (Molloy, & Vasil, 2002). The impact of not forming a coherent or

positive sense of self has implications for individuals and society with respect to co-

morbid psychiatric symptoms. The literature reviewed will attempt to bring together

divergent research covering young people with ASD’s development of a sense of self

and co-morbid feelings of depression and anxiety.

2. Method

After discussion with my supervisor and identification of a key paper (Humphreys, &

Lewis, 2008) in the area of development of a sense of self and accounts from

individuals with an ASD, a literature search was performed using key terms related

to emergent themes from the text. Psych info, psych articles, psychology and

behavioural sciences, medline and web of knowledge were searched for peer

reviewed journals using a variety of terms, with these being narrowed to the

following terms; Autis* or asperg* or ASD or ASC (autism spectrum conditions) and

adolescen* or child or young people or youth and depression or anxiety and self-

concept or identity or sense of self or self or self-image or self-esteem not ADHD

(Attention Deficit Hyperactivity Disorder).

Relevant papers were limited in this specific area and so a search was also conducted

to ascertain papers that cited Humphreys & Lewis (2008). This search revealed

further papers, alongside related papers. The final inclusion of papers was made from

a presentation given by an expert in the field (Williams, 2010) at a conference. 10

papers were finally included and criteria for inclusion was defined by their relevance

83

to the specific area of sense of self in adolescents (under 21), although the age range

was extended for 1 paper as it offered pertinent information with regard to reflecting

back upon school age experiences (Portway, & Johnson, 2005). 2 review papers were

included due to their bringing together of research into prevalence of anxiety and

depression in adolescents. No restrictions were put on the year of publication.

3. Literature review

3.1 Key paper, Humphrey & Lewis, 2008

Humphrey & Lewis (2008) examined the experiences of 20 children aged 11-17 and

utilised interpretive phenomenological analysis of semi-structured interviews with

pupils and of pupil diaries. Participants were pupils with high functioning autism or

Asperger’s syndrome in four mainstream schools in the North West of England. Key

analytic themes were identified and considered; Constructing an understanding of

ASD; Characteristics associated with ASD and life in school; Relationships with

peers; Anxiety and stress in school; Working with teachers and other staff;

Negotiating difference.

With regard to being labelled with ASD evidence was divergent with experiences

being seen as negative (feeling different, not normal, being treated differently and as

their label) or being accepting of an ASD diagnosis and celebrating their differences.

Individual responses were seen to fall into both of these categories and possibly

indicate a struggle to come to terms with ASD. There were many negative

experiences which mainly centred on the social environment of the school.

Participants described exploitation, bullying, difficulties with communication and

social reasoning and an unpredictable and unordered environment, which caused

84

anxiety. Links are made to heightened risks of developing mental health problems

due to increased social isolation and decreased resilience as individuals do not form a

positive notion of themselves.

There were positive experiences, and these appeared to have foundations in a more

positive self-image, which was enabled by social inclusion and friendship.

Participants reported feeling different and being forced to adapt themselves, which

caused a compromise to their identity, and the extra help offered in schools was

positioned as both helping this process and hindering. The authors conclude that

inclusion in mainstream schools is a delicate process, posing many problems for

individuals with ASD’s and see it as an extremely difficult environment for them to

negotiate their identity. The risk of developing co-morbidities is discussed as being

high, but they highlight possibilities for improvement in integration through a

conceptual framework proposed by Norwich and Lewis (2005). This incorporates

consideration to needs that are common to all (all pupils), needs that are specific to

the group (pupils with ASD) and needs that are unique to individuals. Specific group

needs, with common and unique individual needs addressed in the background, is

proposed as a way to improve pupils with ASD’s experience of school and enable

their development.

3.2 Prevalence of anxiety and depression in individuals with an

ASD

Van Steensel et al conducted a meta-analysis of 31 studies to assess the prevalence of

anxiety disorders in young people with a diagnosis of an Autistic Spectrum Disorder

(ASD). The inclusion criteria for the analysis was; Diagnosis of ASD, study was

85

data-based and not a review of the literature, subjects had a DSM-IV diagnosis of an

anxiety disorder and/or fell above clinical cut off for anxiety on a standardised

measure of anxiety and the mean age of the sample had to be less than 18 years (van

Steensel et al, 2011). The analysis looked into overall prevalence of anxiety disorders

and also moderator analyses to assess the impact of mean age, IQ and ASD subtype

on the prevalence and specificity of anxiety disorder.

Results of the analyses indicate that prevalence of anxiety in general in young

people with an ASD diagnosis is almost 40%, with specific phobia most common

(30%), followed by obsessive-compulsive disorder (OCD) (17%), social anxiety

disorder and agoraphobia (almost 17%), generalised anxiety disorder (15%),

separation anxiety disorder (9%) and panic disorder in 2% (van Steensel et al, 2011).

Moderator analyses indicate that as mean age increases so does prevalence of anxiety

in general, although for OCD and separation anxiety disorder a lower mean age was

associated with increased prevalence. Increased rates of anxiety in general were

associated with lower IQ scores (IQ between 70 and 87). The authors report some

evidence that anxiety in general is more likely to be diagnosed in those with a

diagnosis of pervasive developmental disorder not otherwise specified (PDD-NOS)

than those with a diagnosis of Asperger’s syndrome or an autistic disorder. This

indicates that as severity of symptoms decreases, experienced levels of anxiety

increase.

Magnuson & Constantino (2011) reviewed the literature related to depression in

children with ASD’s. The review highlights the paucity of research that relates to the

prevalence of depression and locates the lack of a standardised measure for those

86

with an ASD as the primary reason for this, alongside depression symptoms having

distinct overlap with ASD characteristics (impairments in social interaction,

communication and imagination), and therefore making diagnosis difficult. Young

people are discussed as being at an increased risk of depression in comparison to the

typically developing population, and prevalence rates are estimated at between 1.4%

and 38%.

Lower severity of ASD is discussed as having a relation to higher rates of depression

with a further link to this being that, as insight into condition and cognition improves

so does negative self-perception and lower self-worth. Peer relationships and self-

perceptions are considered to have a major impact upon levels of depression. As

adolescents with ASD’s recognise differences between themselves and their peers,

perceive that they have lowest group membership and social integration, and an

increase in social and self-awareness is observed, so vulnerability to depression

increases. Peer disproval is considered to be predictive of depression, whereas peer

approval, and social competency was seen as predictive of increased global self-

worth scores.

Children with lower IQ and increased severity of ASD symptoms are described as

having fewer symptoms of depression. The relationship between increasing age and

increase in incidence of depression in typically developing children is discussed,

with it being postulated that there may be a similar link in individuals with ASD’s,

but that emotional age may be a stronger predictor than chronological age. The

authors discuss depression and anxiety as being commonly observed in family

members of children with ASD and also discuss a possible genetic link as individuals

87

with ASD and depression often have a familial history of depression. Multi-

informant and varied context assessment of depression symptoms is recommended so

as to ascertain more definite diagnosis and a pathway model is proposed that offers

an approach to diagnosis for both higher and lower functioning children.

3.3 Research complementing the anxiety and depression

evidence base

Strang et al (2012) introduce research into prevalence of depression and anxiety

symptoms in children and adolescents with ASD’s without intellectual disability

using parental report measures. Relationships were investigated between emotional

symptoms, age, cognitive ability and ASD symptoms in children (aged 6 – 12) and

adolescents (aged 13 – 18) with an IQ above 70 (54 children: 41 adolescents).

Results reported show rates of depression and anxiety above those in the general

population, with 30% in the clinical range for depression (44% borderline) and 35%

(56% borderline) in the clinical range for anxiety. They also report that more than

half of the subjects that were in the clinical range for either depression or anxiety

were also in the clinical range for the other.

With regard to age, cognitive ability and severity of ASD symptoms, the authors

report no relationships. The authors postulate that their wide age range and even

distribution of children/adolescents would have revealed an age effect if it was

present and relate this to literature that suggests adolescents with ASD may be able

to report their emotional difficulties, whereas children are unable to, which may

cause the possible age effect that other literature describes. It is suggested that the

parent reports may provide more solid evidence that children do have emotional

88

symptoms, but do not perhaps talk about this and self report measures therefore

overlook the issue. The authors site their research as providing evidence that there is

an increased risk of anxiety and depression symptoms in children and adolescents

with ASD’s without an intellectual disability, regardless of age, IQ or ASD

symptoms.

Foley Nicpon et al (2010) present parent, teacher and self-perceptions of

psychosocial functioning in high ability students with an ASD. 39 children (aged 5 –

11), 15 adolescents (aged 12 – 17), 52 parents and 42 teachers of the

children/adolescents, all of whom had a diagnosis of ASD, completed the Behavioral

Assessment Scales for Children Second Edition (BASC-2) questionnaire. All of the

children were also assessed as being ‘gifted’ according to various measures of

intelligence. The BASC-2 assesses presence of positive (adaptive) and negative

(clinical) behaviour and is critiqued as having strong psychometric properties and

internal consistency.

The results indicate parents/teachers of the adolescents rated them as having reduced

atypicality and increased adaptability compared to the children and all clinical scales,

with the exception of withdrawal, were reduced in the adolescents. The adolescents

did however display significant levels of atypicality, depression and hyperactivity

when compared to a normative sample and parent reports suggest continued struggles

with daily living needs, forming friendships and interacting effectively in a social

environment. Teachers of the children and adolescents reported observing at-risk

symptoms of atypicality, depression and withdrawal.

89

The children and adolescents did not report any significant psychosocial concerns

and the authors postulate that this is due to limited insight into their difficulties.

Mean anxiety levels reported by students, parents and teachers were all within

normal limits and the authors note that this may be due to insensitivity of the BASC-

2. It is highlighted that anxiety in this population does not always manifest in the

usual ways and the BASC-2 may not have, therefore, detected it.

Sebastian et al (2009) compared data from adolescents with a minimum IQ of 90, 13

with ASD’s (mean age 16.9) and 13 typically developing controls (mean age 16.9),

for reactions to an experimental ostracism paradigm that investigated need threat

(self-esteem, belonging, control and meaningful existence), anxiety and mood. Self

report measures pre and post experiment were recorded for both positive (inclusion)

and negative (ostracism) variables.

The results indicate that individuals with ASD were as able as controls to recognise

that they were being excluded from a social situation and reported similar effects of

ostracism on need threat and anxiety as controls. Participants with ASD did not,

however, report any difference in mood following ostracism, whereas mood was

lowered in the control group. The authors postulate that the need threat model is

intact in individuals with ASD and this is in line with need threat occurring

independently of personality or social/situational factors. They further hypothesise

that this indicates individuals with ASD have the same social needs as typically

developing individuals.

90

The meaningful existence category of need threat was heightened in individuals with

ASD and the authors link this with typically developing individuals having a well

developed social network and therefore a means to overcome the feelings of

meaningless in the short term experimental condition, whereas individuals with ASD

may not have access to this resource. Anxiety was observed to be reduced in the

positive task and increased in the negative task in both typically developing

individuals and individuals with ASD. The authors further hypothesise about

differences observed in the self report for anxiety and mood. They postulate either a

qualitative difference between the groups in their experience of ostracism or that

individuals with ASD may have lacked insight into how ostracism affected their

mood. Although the anxiety self reports required introspection, they were relatable to

physical states which may have been easier to understand when compared to the

more abstract emotional states.

Social vulnerability of individuals with Asperger’s syndrome (AS) was investigated

by Sofronoff et al (2011). 133 Parents of children (aged 6 – 16, mean =11.89) with a

diagnosis of AS completed a new social vulnerability scale (SVS) questionnaire that

assesses engagement in behaviours that involve social judgements and indicate social

vulnerability. 92 of the parents also completed questionnaires that measured other

variables, including, anxiety, anger, social skills, bullying and behaviour problems

with correlations being sought between these variables, the SVS and to test the

validity of the SVS. 23 parents also completed the SVS for their typically developing

children.

91

The authors document that the SVS shows good internal reliability and provides real

and existing constructs of social vulnerability, providing both quantitative and

qualitative data. The results indicate that social vulnerability is a characteristic that is

associated with children with AS, and the authors highlight two constructs that are

central to this, credulity and gullibility. Social vulnerability was shown to be

negatively correlated with social skills and positively correlated with anxiety, anger

and behaviour, indicating that as social vulnerability increased it predicted less social

skills and more anxiety, anger and behavioural problems. In relation to bullying,

increased social vulnerability, anger, anxiety and behavioural problems and low level

social skills predicted bullying, but only social vulnerability was an independently

significant predictor of bullying.

3.4 Qualitative accounts

Bagatell (2007) describes a single case, 9 month, ethnographic study of a young adult

(Ben, aged 21) with high functioning autism (ASD), using narrative analysis of

participant observation, in-depth, open ended interviews and artefacts. Ben described

‘feeling different’ for most of his life, being frustrated due to being academically

ahead of his peers, having little interest in other children and being teased. Ben

describes his behaviours as being puzzling to his parents and teachers and being

encouraged to ‘fit in’ and ‘act normal’, but Ben didn’t want to do this as he saw no

reason to and didn’t like being told what to do.

As Ben grew older he began to want to have friends and a girlfriend but found social

interactions difficult, felt something was ‘wrong’ with him and became isolated and

depressed. This was exacerbated by encouragement to ‘act normal’. Eventually Ben

92

was diagnosed with ASD when he was 15. The paper then describes a period whilst

at college where Ben attempted to fit in and be normal. He tried to consciously

control his behaviour, but social situations acted to indicate that he didn’t fit in and

resulted in perceived failure. Ben became increasingly depressed and anxious,

resulting in self harming behaviour, consideration of suicide and hospitalisation.

After discharge Ben attended an ASD conference and sights this as a ‘big change’ for

him and he was able to re-frame his life narrative, whereby his experiences and

behaviours were seen as a normal part of his experience and not shameful or deviant.

Meeting others with ASD’s was also considered to be pertinent in this and Ben

continued this by attending an ASD support group, which enabled him to form a new

‘figured world’ and construct a positive identity as a person with ASD. The author

then goes on to describe conflict that Ben continues to attempt to negotiate between

his two worlds, the ASD world (Aspie) where he fits in and the everyday world

(neurotypical), where he is marginalised. This has then led to Ben becoming more

depressed as he feels people don’t see past his ASD and he feels socially isolated.

Huws & Jones (2008) employed interpretive phenomenological analysis of semi-

structured interviews with 9 students (aged 16 – 21) with ASD to explore experience

of diagnosis, disclosure and having ASD. All students attended a college for young

people with ASD’s. Participants were interviewed individually, initially using three

open-ended questions relating to ASD (what it is, what it meant to them and how

they would explain it to someone that didn’t know about it) and then including

questions about diagnosis if participants did not spontaneously introduce this

perspective. This addition was made after the first three interviews as it appeared as

93

an emerging theme and allowed for fuller and more detailed understanding of the

phenomena.

The superordinate theme of diagnosis, disclosure, and having autism included five

themes; i) Disclosure delay, whereby individuals experienced a delay from time of

diagnosis and the disclosure to them, with reactions to this including feelings of

shock and disappointment. ii) Providing explanations, allowed participants to

retrospectively and currently develop an understanding of their life experiences. iii)

Potential effects of labelling could be both positive (discontinuation of

discrimination) and negative (discrimination). iv) Disruptions and opportunities.

Plans could be disrupted and the diagnosis could be engulfing, but opportunities to

gain access to resources could also occur. v) Acceptance and avoidance. Some

participants viewed the diagnosis as having to be accepted and getting used to it,

whereas others were unaccommodating and actively avoided information associated

with ASD.

Portway & Johnston (2005) introduce research that explores the risks of what they

term a non-obvious disability (AS). Purposive sampling was utilised to identify 25

participants, 18 young adults diagnosed with AS (aged 18 – 35) and their parents –

some young adults did not take part and their parents’ data was used. Qualitative

methods used interviews to obtain life stories for the participants and using constant

comparative analysis, the analysis became organised around the emerging them of

‘not quite fitting in’, with this being sub-categorised into every day and longer term

risks associated with marginalisation.

94

Everyday risks in childhood were documented as high and included

misunderstanding others, being misunderstood, bullying, isolation, loneliness and

having few friendships. The problems were most obvious at school and many of the

participants were said to have increasingly perceived themselves as different from

their peers. Longer term risk are discussed in the context of everyday risks and the

underlying diagnosis of AS. There is a restriction upon psychological and social

resources for coping and specific risks discussed relate to underachievement,

dependency upon parents and mental health problems including depression, anxiety,

obsessions and expressions of suicide.

Mental health risks are stated to be the most notable by the authors, with 23 of the 25

young adults experiencing enduring problems. The authors link the risk of depression

to individuals in the general population being more prone to depression if they have

more polarised, less imaginative and more constricted thought processes, which

shares characteristics of AS profile. These risks are then related to early diagnosis

and labelling and the authors postulate from their findings that early recognition of

AS could have benefits in attempting to ameliorate these risks.

3.5 Critique

The studies described reflect what the author of this review considers to be the most

relevant research pertaining to the development of a sense of self for individuals with

an ASD and the relation of this to anxiety and depression. The majority of the

research conducted utilised relatively small samples and it is therefore difficult to

generalise this to the general population, especially considering the mixed evidence

that is provided from the findings.

95

The described papers, excluding the two review papers (Magnuson, & Constantino,

2011; van Steensal et al, 2011), all relate to individuals that may be categorised as

being high functioning in relation to their autistic spectrum disorder, again indicating

that findings cannot be generalised to the general ASD population. The qualitative

research (Humphrey, & Lewis, 2008; Bagatell, 2007; Huws, & Jones, 2008; Portway,

& Johnson, 2005) could be considered to be situated in specific contexts and only the

Humphrey & Lewis findings relate to direct feedback from individuals under the age

of 16, with the other research pertaining to reflection after the event when

considering individuals perceptions before the age of 16.

Although the reflection after the event was not long after the period of childhood,

and Huws & Jones’s findings can be considered to be during adolescence (age 16-

21), the ability of the individuals to reflect may have increased with experience. This

highlights the lack of evidence relating to younger individuals with an ASD, but also

the heterogeneity in defining a term such as adolescent. This should not negate the

relevance of the evidence however, as reflection offers invaluable insight into

feelings and mood of individuals that may not be able to explicitly express this at a

younger age.

The prevalence and characterisation of anxiety and depression appears to be

extremely varied. Both Magnuson & Constantino and van Steensel et al report a

paucity of research in this area and a great deal heterogeneity in the assessment of

anxiety/depression and the measures used across studies. Defining prevalence and

making links to other aspects of ASD is therefore a difficult task.

96

3.6 Synthesis

The empirical evidence indicates that individuals with an ASD have a high risk of

developing depression and anxiety and that prevalence rates of depression and

anxiety in this population are elevated when compared to the typically developing

population (van Steensel et al, 2011; Magnuson, & Constantino, 2011). Prevalence

rates are difficult to determine due to the overlap in symptoms of depression/anxiety

and the characteristics of ASD’s and would appear to show that the rates could

therefore be either overestimated or underestimated.

Research into prevalence rates does seem to be hindered by the lack of standardised

measures for the ASD population and self report on symptoms can considered to be

mixed due to the documented difficulties that individuals with an ASD experience in

understanding and expressing emotion/feelings. Evidence is mixed with relation to

links between age, IQ, severity of ASD symptoms and anxiety/depression. As

individuals with ASD’s grow older evidence indicates that there is an increased risk

and prevalence of depression/anxiety, and individuals qualitative reports highlight

that as a sense of self emerges with age, so do feelings of difference and

depression/anxiety.

Strang et al’s research would appear to contradict this however, with age not being

related to increased risk of depression/anxiety that is observed in individuals with an

ASD. This research utilised parent reports and it indicates that younger children do

have symptoms of anxiety/depression, but that they are perhaps not aware of the

impact of their social exclusion or are unable to explicitly express their views.

97

Symptoms of anxiety and depression do appear to be present in younger individuals

with ASD but are perhaps not reported by those individuals and are missed due to the

similarity with characteristics of ASD. This would indicate that feelings of

anxiety/depression are present from an early age as the individual perhaps has a

notion of difference but is not able to express this. The impact of anxiety/depression

upon the developing sense of self could then have an exponential effect upon the

sense of self and conversely the feelings of depression/anxiety. There does not

appear to be any cause effect observed between anxiety/depression and a

positive/negative sense of self indicating that both constructs are inextricably linked.

It would seem logical that an awareness, at some level, of a sense of self as being

different, and if this is a negative experience, would lead onto feelings of anxiety and

depression however.

The notion of a positive/negative sense of self appears to be strongly linked to social

interactions with peers. Sofronoff et al highlight that individuals with an ASD are

vulnerable to bullying, with credulity and gullibility being central to the reasons

behind this. This would support Humphrey & Lewis’s research that indicates

individuals with ASD are socially naive and prone to being bullied. Sebastian et al

indicate that individuals with an ASD are able to recognise ostracism, although this

was an experimental study and lacked ecological validity, but do not perhaps realise

or have the ability to express the impact of this upon their mood. The combination of

these factors would indicate that individuals with an ASD are vulnerable and prone

to bullying and internalise the effect of this, although this is not observed or

expressed.

98

Internalisation of negative experiences has the potential to cause feelings of

anxiety/depression, which as the individual’s sense of self develops as a construct of

these negative views and negative feelings about the self, again has the potential to

exponentially affect a negative sense of self. Positive experiences of peer interactions

appear to offer individuals the potential to gain resilience from anxiety/depression

(Humphrey, & Lewis, 2008), as well as being able to position and gain an emergent

identity encompassing ASD as a positive aspect of the self (Humphrey, & Lewis,

2008; Bagatell, 2007). The emergent identity that encompasses an insight into the

realities of ASD characteristics does appear to be one that is then difficult to

integrate into socially accepted norms however. Integration of the individual’s sense

of self as being different to others appears to be extremely important. When this

difference is thought of as problematic and not conforming to the social norms, with

the individual feeling that they have to ‘fit in’, a great deal of anxiety and lack of

self-worth are observed (Humphrey, & Lewis, 2008; Bagatell, 2007), whereas when

an individual is able to recognise their difference as a difference and not deviant, a

more positive outcome about the sense of self may be observed.

The role of diagnosis in the development of a sense of self appears to be divergent,

again pertaining to an individual’s perception of themselves as different and if this

difference is able to be considered to be positive or negative. Molloy & Vasil (2002)

argue, by drawing on the field of disability studies, that the medical model approach

to developmental disorders, namely AS, is largely counter-productive, with children

being arguably defined by their label once diagnosed, losing their individuality and

limiting other’s expectations of them. They go on to postulate that there can be a

tendency to view children’s behaviour as symptoms of their diagnosis and view the

99

‘disability’ as located with the individual. This ignores the individual’s unique

personality and the social context that imposes expectations upon the individual.

At present access to resources that can enable individuals with ASD’s development

are often allocated on the basis of diagnosis. So, whilst this reflection about labelling

may be pertinent to the argument about the impact of it upon sense of self, not

receiving a diagnosis also has the potential to restrict individuals’ development,

again perhaps having a detrimental impact upon self-concept. Indeed, as previously

described, Portway & Johnson (2005) postulate that receiving a diagnosis has more

potential to ameliorate the risks associated with co-morbid mental health risks, than

not receiving a diagnosis.

3.7 Limitations of this review

The author of this review recognises that the synthesis of the findings is based upon

limited research and only covers published papers. Reflecting upon the experience of

conducting the review, the author also recognises that the method of literature review

was perhaps naive and further development of the literature base is possible. It is also

recognised that review of the primary papers pertaining to anxiety and depression

would have been beneficial, but this was beyond the scope of this review.

4. Conclusions and recommendations

4.1 Conclusions

In conclusion, it appears that individuals with an ASD do form a sense of self in

relation to their social environment and this has the potential to be both positive and

negative. Characteristics of ASD’s make negotiation of this complex, especially in

100

the unpredictable, volatile school environment and with special consideration given

to the observed social vulnerability in these individuals. There appears to be an

inextricable link between the development of sense of self, risk of developing anxiety

and depression in relation to this, and a potential for the two constructs to interplay to

affect the experience of each for individuals with an ASD.

There are many other factors that are linked to development of a sense of self for

individuals with an ASD, with the majority of these appearing to be in the social

domain, with a key factor seeming to be peer relationships. There is some evidence

that younger individuals do experience symptoms of anxiety and depression, which

in turn may manifest as a development of a negative sense of self. The development

of a sense of self for individuals with an ASD appears to be surrounded by conflict.

Individuals with an ASD have to negotiate norms imposed by society, whilst perhaps

not fully understanding these norms and develop a sense of self as an individual with

an ASD.

4.2 Implications for clinical psychology

This emerging field of research appears to offer opportunities for clinical psychology

to develop the research base and to enable development of early intervention

strategies. Enabling a positive sense of self from an early age, perhaps by developing

strategies that recognise abilities rather than impairments, has potential to ameliorate

negative self-concepts for individuals with an ASD, which in turn may decrease risk

of development of co-morbid psychiatric disorders.

101

4.3 Future research recommendations

Due to the apparent paucity of research in this field, development of the research

base seems essential. The heterogeneity of research into prevalence of anxiety and

depression in individuals with an ASD indicates that development of a common

assessment measure, encompassing multi-informant responses, and sensitivity for

younger individuals, is required. Clinical studies that include more participants and

matched controls would give more credence to the evidence base, although it is

recognised that this task is a large one when considering the variety of presentations

observed with regard to characteristics of ASD’s and the available population.

Further unpicking of the effect of age, IQ and severity of ASD upon feelings of

anxiety and depression is required, from both a quantitative and a qualitative

perspective.

Evidence obtained relating to the views of individuals with an ASD highlight

emergent themes of risk of depression and anxiety as individuals interact in their

social environment. Research that directly relates to individuals views and

experiences with relation to this would complement the research base, alongside

longitudinal studies of individuals as they navigate their lifespan and negotiate their

development of a sense of self. More in depth questions relating to friendship and

peer interaction seem crucial as social support appears to offer great potential for

individuals improving resilience to the risk of depression and anxiety.

102

5. References

Bagatell, N. (2007). Orchestrating voices: autism, identity and the power of

discourse. Disability & Society, 22, 413-426.

Baron-Cohen, S., Leslie, A. M., & Frith, U. (1985). Does the autistic child have a

“theory of mind”? Cognition, 21, 37-46.

Cooley, C. H. (1902). Human Nature and the Social Order. New York, Scribner.

Foley Nicpon, M., Doobay, A. F., & Assouline, S. G. (2010). Parent, teacher, and

self perceptions of psychosocial functioning in intellectually gifted children and

adolescents with autism spectrum disorder. Journal of Autism and Developmental

Disorders, 40, 1028-1038.

Humphrey, N., & Lewis, S. (2008). ‘Make me normal’: The views and experiences

of pupils on the autistic spectrum in mainstream secondary schools. Autism, 12,

23-46.

Huws, J. C., & Jones, R. S. P. (2008). Diagnosis, disclosure, and

having autism: An interpretive phenomenological analysis of the perceptions of

young people with autism. Journal of Intellectual & Developmental Disability,

33, 99-107.

Kanner, L. (1943). Autistic disturbances of affective contact. Nervous Child, 2,

217-250.

Magnuson, K. M., & Constantino, J. N. (2011). Characterization of depression in

children with autism spectrum disorders. Journal of Developmental & Behavioral

Pediatrics, 32, 332-340.

Mead, G. H. (1934). Mind, Self and Society. Chicago, IL, University of Chicago

Press.

103

Molloy, H., & Vasil, L. (2002). The social construction of Asperger syndrome: the

pathologising of difference? Disability & Society, 17, 659-669.

Muller, E., Schuller, A., & Yates, G. B. (2008). Social challenges and supports from

the perspective of individuals with Asperger syndrome and other autism spectrum

disabilities. Autism, 12, 173-190.

Norwich, B., & Lewis, A. (2005). How specialised is teaching pupils with disabilities

and difficulties?, in Lewis, A., & Norwich, B. (eds). Special Teaching for Special

Children?, pp 1-14. Buckingham: Open University Press.

Perner, J., Frith, U., Leslie, A. M., & Leekham, S. R. (1989). Exploration of the

autistic child’s theory of mind: Knowledge, belief and communication. Child

Development, 60, 688-700.

Portway, S. M., & Johnson, B. (2005). Do you know I have Asperger syndrome?

Risks of a non-obvious disability. Health, Risk & Society, 7, 73-83.

Sebastian, C., Blakemore, S-J., & Charman, T. (2009). Reactions to ostracism in

adolescents with autism spectrum conditions. Journal of Autism and

Developmental Disorders, 39, 1122-1130.

Sofronoff, K., Dark, E., & Stone, V. (2011). Social vulnerability and bullying in

children with Asperger syndrome. Autism, 15, 355-372.

Strang, J. F., Kenworthy, L., Danilos, P., Case, L., Wills, M. C., Martin, A., &

Wallace, G. L. (2012). Depression and anxiety symptoms in children and

adolescents with autism spectrum disorders without intellectual disability.

Research in Autism Spectrum Disorders, 6, 406-412.

van Steensel, F. J. A., Bogals, S. M., & Perrin, S. (2011). Anxiety disorders in

children and adolescents with autistic spectrum disorders: A meta-analysis.

Clinical Child and Family Psychology Review, 14, 302-317.

104

Williams, E. (2010). The impact of social context on inclusion, presentation given at

conference entitled Inclusive education for Pupils with Autism Spectrum

Disorders:  Applications and Challenges, University of Portsmouth, 9th

December.

105

Clinical Experience

Year 1

Adult Mental Health

Difficulties worked with: Post-traumatic stress disorder (PTSD), depression,

obsessive compulsive disorder (OCD), social phobia, generalised anxiety, bipolar

disorder, paranoid schizophrenia (worked with client diagnosed with paranoid

schizophrenia to overcome OCD), emotional intensity disorder and eating disorder.

Models used: Cognitive Behavioural Therapy (CBT), narrative, systemic (joint work

with supervisor and mother/son), integrative and psychoeducation.

Other experience: Co-facilitation of systems training for emotional predictability

and problem solving (STEPPS) reinforcement group and eating distress groups. Met

with Carers Support Service and attended support groups.

Year 2

Child and Adolescent Mental Health Service (CAMHS)

Difficulties worked with: Depression, social anxiety, eating disorder, generalised

anxiety, behavioural/anger difficulties, health issues (non-compliance with epilepsy

medication), self-harm, suicidal ideation (work in sessions and assessment in

hospital), low self-esteem, autistic spectrum conditions (ASC) and attention deficit

hyperactivity disorder (ADHD).

Models used: Integrative, CBT, systemic, psychodynamic (formulation and

integration of theory in sessions) and narrative.

Other experience: Met Young Carers project lead and spent time with emotional

wellbeing project to think about evaluation of the project.

106

Learning Disability Service (Challenging Behaviour Team)

Difficulties worked with: Anger, transitions, identity, parenting issues, severe

decline in cognitive function, bipolar disorder, challenging behaviour, stress and

relationships, ASC, ADHD, epilepsy, somatic illness and attachment.

Models used: Systemic, CBT, narrative, positive behaviour support (PBS),

functional assessment (and behavioural intervention plans).

Other experience: Service development - development of consultation model and

consultation clinics, facilitated reflective practice session regarding consultation

clinics and development of feedback form, teaching session with staff team and

presented/spoke at child protection conference regarding ability of client to safely

parent their child and further consulted with core group.

Year 3

Older Adults (inpatient and community)

Difficulties worked with: Dementia (Alzheimer’s and non-Alzheimer’s), transitions

(realisations about aging and negotiating despair and integrity), communication

difficulties, severe cognitive impairment, mobility issues, generalised anxiety and

depression.

Models used: Integrative, CBT, narrative, systemic, psychodynamic and Newcastle.

Other experience: Teaching/facilitation of psychological formulation sessions with

an in-reach staff team, co-facilitation of cognitive stimulation group, formulation

work with a care home regarding a client, service development - person centred care

plans, supervision of psychology interns work (qualitative research and care plans).

During this placement one of the clients that I saw for assessment and formulation of

difficulties, whilst they were an inpatient and subsequently given home leave,

107

committed suicide. I was then involved in the team debrief and investigation of the

incident.

Specialist Placement – CAMHS

Difficulties worked with (amongst others): PTSD, specific phobia, generalised

anxiety, social anxiety, panic, hallucinations, OCD, anorexia, low self-esteem,

oppositional behaviour, attachment issues, self-harm and suicidal ideation, ADHD,

relationship difficulties, emotional intensity disorder, hallucinations, tics and

identity.

Models used: Integrative, CBT, narrative, systemic, attachment, acceptance and

commitment therapy (ACT)

Specifics of specialist elements: Worked as part of the ASC assessment team.

Undertook two LAAC cases. Worked as part of the family therapy team (worked as

part of the reflecting team and was lead clinician for one case).

Throughout training

Neuropsychological assessment. The following are tests that I have direct experience

of administering: Wechsler Adult Intelligence Scale (WAIS-III and WAIS-IV),

Wechsler Test of Adult Reading (WTAR), Neuropsychological Assessment Battery

(NAB), Wechsler Intelligence Scale for Children (WISC-IV), Oliver and Crayton,

Behavioural Assessment of the Dysexecutive Syndrome (BADS), Birt Memory and

Information Processing Battery (BMIPB) and Wechsler Preschool and Primary Scale

of Intelligence (WPPSI).

108

Table of Academic Assignments

Year I Assessments

PROGRAMME COMPONENT

TITLE OF ASSIGNMENT

Fundamentals of Theory and Practice in Clinical Psychology (FTPCP)

Short report of WAIS-III data and practice administration

Research –SRRP N/A: Completed in Year 3Practice case report “Assessment and cognitive behavioural formulation for a

man in his forties presenting with severe depression”

Problem Based Learning – Reflective Account

Problem Based LearningReflective Account

Research – Literature Review

Development of Sense of Self in Adolescents with an Autistic Spectrum Disorder and Relation of this to Co-morbid Anxiety and Depression: A review of the literature

Adult – case report “Assessment, cognitive behavioural formulation and therapy with a man in his thirties presenting with severe depression and post-traumatic stress disorder”

Adult – case report “Assessment, cognitive behavioural formulation and therapy with a male in his thirties presenting with obsessive compulsive disorder and a diagnosis of paranoid schizophrenia”

Research – Qualitative Research Project

Qualitative Research Group ReportMulticultural Identity: Experience and Meaning Making

Research – Major Research Project Proposal

Exploring emotional processes surrounding making sense of self in adolescents diagnosed with a high-functioning autism spectrum condition

Year II Assessments

PROGRAMME COMPONENT

TITLE OF ASSESSMENT

Research - SRRP N/A: Completed in Year 3Research Research Methods and Statistics testProfessional Issues Essay Is ‘recovery’ possible for carers? What would that look like?

Critically review Slade’s recovery model (Rethink, 2009) in the light of research on carers’ experiences of caring

Problem Based Learning – Reflective Account

PBL Reflective Account Year 2

People with Learning Disabilities/Child and Family/Older People – Case Report

“Assessment, cognitive behavioural formulation and therapy with an adolescent boy presenting with bulimia nervosa”

109

Personal and Professional Learning Discussion Groups – Process Account

PPLDG Process Account

People with Learning Disabilities/Child and Family/Older People – Oral Presentation of Clinical Activity

Implementing consultation clinics in a learning disability team

Year III Assessments

PROGRAMME COMPONENT

ASSESSMENT TITLE

Research - SRRP“Evaluation of service user experience of a specialist personality disorder service”

Research – MRP Portfolio A thematic analysis exploring social and emotional aspects of self-understandingin adolescents on the autism spectrum

Personal and Professional Learning – Final Reflective Account

On becoming a clinical psychologist: A retrospective, developmental, reflective account of the experience of training

Child and Family/People with Learning Disabilities/ Older People/Specialist – Case Report

Neuropsychological Assessment for Differential Diagnosis of Dementia

110