Self-understanding in adolescents on the autism spectrumepubs.surrey.ac.uk/809117/1/MRP portfolio...
Transcript of Self-understanding in adolescents on the autism spectrumepubs.surrey.ac.uk/809117/1/MRP portfolio...
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).
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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,
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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
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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
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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
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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
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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
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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
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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).
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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.
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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
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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
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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 &
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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
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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
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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.
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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:
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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
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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”.
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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
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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
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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: [email protected]
Research supervisor: Dr Emma Williams
Contact: [email protected]; 01483686909
Research supervisor: Dr Kate Gleeson
Contact: [email protected]
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.
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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 ([email protected] ) (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.
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Thank you for your time.
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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…………………………………………………………………………………………………….
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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
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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?
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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
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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?
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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?
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Appendix F. Ethical approval
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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
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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
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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
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63
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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’
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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
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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.
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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).
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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).
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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
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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.
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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.
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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
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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.
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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
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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
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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
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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
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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
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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
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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.
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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.
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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
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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
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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.
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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.
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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.
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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.
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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.
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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
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‘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
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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.
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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.
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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.
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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.
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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.
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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.
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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,
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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).
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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”
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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
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