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A thematic analysis investigating the impact
of educational context on how pupils with
Autism Spectrum Conditions make sense of
peer relations and themselves
Jennifer Tibbles
Submitted for the Degree of
Doctor of Psychology(Clinical Psychology)
School of PsychologyFaculty of Health and Medical Sciences
University of SurreyGuildford, SurreyUnited KingdomSeptember 2016
1
Abstract
Objective: There has been limited research comparing the experiences of students
with autism spectrum conditions (ASC) in mainstream and non-mainstream
educational placements. It is possible that different contexts may influence the
social comparisons made by students, influencing their self-perception and self-
esteem. This investigation explores whether educational context influences the
social comparisons of students with ASC
Design: Thematic analysis of transcripts of semi-structured interviews. Sixteen
participants, eight from a dedicated ASC unit within a mainstream school and
eight from a specialist school for ASC were interviewed. This investigation used
data previously collected for a separate study.
Findings: In both contexts, participants made different comparisons with
Typically Developing (TD) or mainstream peers than to peers with ASC. When
comparing themselves to peers with ASC, participants saw themselves as being
similar, but superior to them in the sense of having less severe difficulties. There
were differences between the contexts in how they compared themselves to TD or
mainstream peers. Participants from the unit saw themselves as different,
positioned themselves in relation to that difference and described their peers as
seeing them negatively. In contrast, participants from the ASC school emphasised
similarity to TD friends, and downplayed the impact of ASC. Although aware of
negative perceptions towards ASC, this was perceived as a response to the ‘label’
of ASC, usually from people not personally familiar with the participant.
2
Conclusions: Participants in different educational contexts made different social
comparisons. Placement in a mainstream school unit was associated with greater
perception of difference from TD peers than participants in the specialist school.
Implications: The self-perceptions of students with ASC in different educational
contexts may have implications for their behaviour and for their mental health,
therefore interventions to support inclusion may need to address this directly.
Keywords
Autism Spectrum Conditions, Education, Social Comparison Theory, Qualitative,
School Pupils
3
Acknowledgements
There are many people I would like to thank for their contributions and support.
Firstly, the participants and the staff at school who gave their time and support,
and the researchers involved in original data collection. My supervisors Emma
Williams and Nan Holmes and for their invaluable support, advice and
encouragement. I would also like to thank the program team, particularly Kate
Gleeson and Laura Simonds, for their support throughout this process.
In addition, I would like to thank the contributors to the original research I
undertook, including the participants and day centre staff who gave time and
assistance, and my supervisors Jason Spendelow, Caroline Catmur and Julie
Lloyd for their advice and guidance.
In general, I would like to thank my fellow trainees for their support through
training, and my family and friends for their encouragement throughout the years
of training. I am also grateful for the support, advice and guidance from my
clinical supervisors on placements and the many excellent teams I had the
opportunity to work with.
4
Table of Contents
Abstract....................................................................................................................1
Acknowledgements..................................................................................................3
Empirical Paper
A thematic analysis investigating the impact of educational context on how pupils
with Autism Spectrum Conditions make sense of peer relations and themselves
Statement of journal choice......................................................................................7
Abstract....................................................................................................................8
Introduction............................................................................................................10
Method...................................................................................................................16
Analysis..................................................................................................................22
Discussion..............................................................................................................44
Notes......................................................................................................................53
References..............................................................................................................53
List of Appendices.................................................................................................62
5
Research Proposal
An Investigation into the Personal Characteristics of Individuals with
Intellectual Disabilities Associated with Understanding Reciprocal
Roles in Cognitive Analytic Therapy
Introduction..........................................................................................................112
Method.................................................................................................................116
Data Analysis.......................................................................................................122
Consulting Interested Parties...............................................................................122
Contingency Plan.................................................................................................122
Dissemination Strategy........................................................................................123
References............................................................................................................124
Literature Review
A systematic review into the personal characteristics of individuals
with intellectual disabilities associated with the ability to benefit from
psychological intervention.
Abstract................................................................................................................130
Statement of Journal Choice................................................................................130
Introduction..........................................................................................................130
6
Method.................................................................................................................135
Results..................................................................................................................139
Client Characteristics and Efficacy of Intervention.............................................139
Personal Characteristics and Therapeutic Task Performance..............................149
Discussion............................................................................................................156
References............................................................................................................161
List of Appendices...............................................................................................167
Clinical Experience
Overview of Clinical experience..........................................................................192
Assessments
Table of Assessments completed.........................................................................195
7
A thematic analysis investigating the impact on educational context on how
pupils with Autism Spectrum Conditions make sense of peer relations and
themselves
9,986 Words
Statement of journal choice
Autism was chosen as a potential journal for publication. Autism specialises in
publishing research regarding ASC, and is targeted at a multi-disciplinary
audience. This is important as the topic addressed (educational context) has
applications to a broad range of professionals. This journal is willing to consider
and publish qualitative research.
Journal guidelines can be found in Appendix A.
8
Abstract
Objective: There has been limited research comparing the experiences of students
with autism spectrum conditions (ASC) in mainstream and non-mainstream
educational placements. It is possible that different contexts may influence the
social comparisons made by students, influencing their self-perception and self-
esteem. This investigation explores whether educational context influences the
social comparisons of students with ASC
Design: Thematic analysis of transcripts of semi-structured interviews. Sixteen
participants, eight from a dedicated ASC unit within a mainstream school and
eight from a specialist school for ASC were interviewed. This investigation used
data previously collected for a separate study.
Findings: In both contexts, participants made different comparisons with
Typically Developing (TD) or mainstream peers than to peers with ASC. When
comparing themselves to peers with ASC, participants saw themselves as being
similar, but superior to them in the sense of having less severe difficulties. There
were differences between the contexts in how they compared themselves to TD or
mainstream peers. Participants from the unit saw themselves as different,
positioned themselves in relation to that difference and described their peers as
seeing them negatively. In contrast, participants from the ASC school emphasised
similarity to TD friends, and downplayed the impact of ASC. Although aware of
negative perceptions towards ASC, this was perceived as a response to the ‘label’
of ASC, usually from people not personally familiar with the participant.
9
Conclusions: Participants in different educational contexts made different social
comparisons. Placement in a mainstream school unit was associated with greater
perception of difference from TD peers than participants in the specialist school.
Implications: The self-perceptions of students with ASC in different educational
contexts may have implications for their behaviour and for their mental health,
therefore interventions to support inclusion may need to address this directly.
Keywords
Autism Spectrum Conditions, Education, Social Comparison Theory, Qualitative,
School Pupils
10
Introduction
Impact of educational context on pupils with autism spectrum
conditions
The official recommendations for children with special educational needs (SEN)
in the UK advocate that they are best placed in a mainstream school, with
additional provisions to meet their needs (Department for Education and
Employment (DfEE), 1997; Office for Standards in Education (OFSTED), 2006).
As a result, most students with ASC are currently educated in mainstream settings
(National Autistic Society (NAS), 2015). However, concerns have been raised by
parents of these children about the provision of SEN support in schools, with
approximately two thirds of respondents to a NAS survey stating they would
prefer a more specialist provision (NAS, 2015).
Research has suggested students with ASC may experience difficulties in the
school setting. They have been shown to under-perform academically compared to
their IQ, possibly due to difficulties with attention and emotional regulation
(Ashburner et al., 2010; Waddington and Reed, 2016), and be more likely to face
fixed- or permanent-term exclusion from mainstream schools than TD peers
(NAS, 2015). Students with ASC in mainstream schools also reported lower
quality friendships and greater loneliness than TD peers (Bauminger and Kasari,
2000; Bauminger et al., 2003; Calder et al., 2012; Rowley et al. 2012), and were
at greater risk of being bullied than their TD peers or peers with other SEN
(Humphrey and Symes, 2009; Rowley et al. 2012; Zeedyk et al., 2014). By
11
comparison, students with ASC who attended a specialist school had lower levels
of caregiver-reported anxiety than those who attended mainstream (Zainal and
Magiati, 2016), and were at less risk of being bullied (Hebron and Humphrey,
2014; Shtayermman, 2007; Zablotsky et al., 2014). A study investigating the
development of social and functional skills of students with a variety of SEN
conditions, including ASC, showed significantly greater improvement in
mainstream rather than specialist settings (Fisher and Meyer, 2002), whilst Reed
et al. (2012) found the reverse in a sample of students diagnosed with ASC in
mainstream or specialist schools. However, all these quantitative studies share a
common confounding factor, as participants are not randomly assigned to
educational settings, but placed there due to particular characteristics or needs
(White et al., 2007). Therefore, it is difficult to conclude from this research alone
how educational context affects students with ASC.
An alternative approach to understanding the impact of educational placement is
to use a qualitative approach to explore the experiences of students, or other
stakeholders. Roberts and Simpson (2016) reviewed qualitative investigations into
the experiences of inclusive education for young people with ASC, their teachers,
and their parents, and identified a number of important factors influencing the
experiences of pupils with ASC at school, including: teacher knowledge and
availability of support, and peer understanding and acceptance. The impact of the
characteristics of ASC and stress caused by the demands of mainstream settings
have also frequently emerged as a theme (Baric et al. 2016; Carrington and
Graham, 2001; Conner, 2000; Humphrey and Lewis, 2008). Bullying has often
been identified as a difficulty; and students with ASC in mainstream settings
12
perceived problems in forming friendships (Calder et al., 2012; Carrington et al.,
2003; Daniel and Billingsley, 2010), but friendships were also valued by
participants, and seen as an important protective factor (Humphrey and Lewis,
2008; Saggers et al., 2011). However, the qualitative research base has its own
limitations. The majority of papers have focused on students from fully or
partially integrated settings (Roberts and Simpson, 2016; Williams et al., under
review), which means there is little understanding either of the experience of
students in specialist schools, or the extent to which educational context
influences experience. Furthermore, most investigations have included the voices
of parents or professionals, which may ‘drown out’ the voices of the students
themselves (Williams et al., under review).
Two qualitative investigations focused exclusively on the experience of students,
both intending to explore the participants’ perceptions of ASC. Their findings
differed in some key respects. Humphrey and Lewis (2008) reported that
participants from mainstream secondary schools saw themselves as ‘different’ and
experienced rejection, despite efforts to fit in, which could result in frustration -
prompting the key phrase ‘make me normal’ (although a sub-set had come to
accept having ASC). They described a process by which participants internalised
the negative perceptions of others, which ultimately influenced their self-esteem
and increased anxiety. By comparison, Huws and Jones (2015) reported that
participants attending an ASC specialist college perceived themselves to have
improved over time, prompting the key phrase ‘I’m glad this is developmental’.
Their participants also positioned themselves in relation to those they perceived as
having greater difficulties (including peers with ‘more severe’ ASC, or ‘real’
13
disabilities), and compared themselves favourably with TD peers based on skills
related to ASC. Overall, the participants in Huws and Jones (2015) showed a
slightly more positive approach to ASC than that reported by Humphrey and
Lewis (2008), which has potential implications for their self-perception and
mental wellbeing. However, due to the differences between the papers it is
difficult to conclude whether this difference is due to the educational context
(mainstream as compared to specialist settings), or the ages of the participants
(school as compared to college students).
In summary, the evidence suggests that students in mainstream and specialist
placements may have different experiences and different outcomes, but the
processes by which educational placement affects students are unclear. Further
research is required not only to focus on the experiences of students with ASC,
but also to explore whether this is influenced by differences in educational
contexts.
Social comparison theory and educational context
Huws and Jones (2015) identified that participants constructed their understanding
of themselves through comparisons with others, and discussed this in relation to
social comparison theory. Social comparison theory proposes that people are
driven to evaluate their own opinions and abilities (Festinger, 1954), and
emotions, personality and self-identity (Wood and Taylor, 1991) through
comparison with others. A review of the evidence has suggested that available
social comparison figures have a greater impact on day-to-day self-evaluation
than objective criteria (Wood, 1989). According to Feininger (1954), the purpose
14
of comparing opinions is to increase uniformity within the group, whereas
comparing abilities is associated with a constant universal drive to improve.
People select ‘similar’ others for comparative purposes as the greater the
difference between oneself and another, the less likely or reliable comparison is.
This means social comparisons are often an intra-group process and group
membership and stronger group attachment are associated with stronger drive
towards uniformity (Festinger, 1954). Other theories have emphasised the role of
inter-group comparisons - it has been demonstrated that people who belong to
lower status groups in a hierarchy of groups have lower self-esteem than both
members of higher status groups and ‘independent’ outsiders (people uninterested
in belonging to a group) but higher self-esteem than ‘envious’ outsiders (people
who want to belong to a group, but do not) (Brown and Lohr, 1997).
The process of comparisons in both cases are similar. Comparisons are either
‘upward’ (with someone perceived to be superior to yourself) or ‘downward’
(with someone perceived to be inferior to yourself) (Wood and Taylor, 1991). It
has been demonstrated that the context of these comparisons can influence the
impact they have on self-esteem and self-perception. As described by Major et al.
(1991), upwards comparisons may be distressing and reduce self-esteem,
particularly if the individual believes the dimension under comparison is out of
their control, and they may distance themselves from the target of comparison
(Schmitt et al. 2006). However, if the dimension is within their control, upwards
comparisons may result in efforts to improve and greater association with the
target of comparison (Major et al., 1991). Downwards comparisons for attributes
under an individual’s control can result in increased self-esteem, and greater value
15
for the dimension under comparison; or if the dimension is not within the
individual’s control, they can increase their perception of their own vulnerability,
and increase distancing from the target of comparison (Major et al., 1991; Wills,
1991).
Social comparison theory has been shown to influence the self-perception of
students in schools (Rogers et al., 1978). For example, gifted students placed in
advanced classes may have lower academic self-concept than gifted students in
mainstream classes, referred to as the ‘Big Fish Little Pond Effect’ (Huguet et al.,
2009; Thijs et al., 2010). Social comparison theory has also been used to
understand the self-perception of individuals with Intellectual Disabilities (ID).
Students with ID in both mainstream and specialist settings made similar social
comparisons, although this may be because the comparisons were made in
response to a vignette, rather than representing the comparisons made in
participants’ daily lives (Cooney et al., 2006). They made downwards
comparisons to less able peers in both contexts, which is consistent with evidence
that adults with ID use downwards comparisons to construct a positive self-
identity (Finlay and Lyons, 2000). This is also similar to the findings reported by
Huws and Jones (2015), suggesting that students with ASC may use similar
processes to construct their own self-perception.
It has been suggested that social comparisons have less importance for people
with ASC than other populations, due to their social impairments or lack of social
motivation (Dvash et al., 2014). However, Huws and Jones (2015) found that
students at a specialist ASC college used social and temporal comparisons to
16
make sense of their diagnosis and themselves. Social comparisons have also been
found to be associated with mental health difficulties in an ASC population, as
high ratings of ‘difference’ measured by the social comparison scale have been
associated with higher levels of depressive symptomatology in participants with
ASC, from primarily mainstream school settings (Hedley and Young, 2006).
Whilst this suggests social comparisons are used by people with ASC, there has
been very little research exploring the influence of social context. Further research
is necessary to understand the impact of educational context on the social
comparisons of students with ASC. Understanding this process may have
implications for how we adapt the school environment to meet the needs of
students with ASC.
Research Question
How, if at all, does educational context affect the social comparisons of students
with ASC attending either an ASC unit in a mainstream school, or an ASC
specialist school?
Method
Design
This investigation conducted a qualitative analysis of transcripts of semi-
structured interviews, collected as part of a larger ongoing project investigating
how young people with ASC make sense of their experiences and themselves in a
variety of educational contexts. The term ‘data corpus’ refers to all the material
17
collected in the larger project, while the term ‘data set’ refers to the material
included in this investigation.
A thematic analysis approach was chosen to explore themes across the data set,
rather than focusing on the idiographic experiences of individuals (Braun and
Clarke, 2006). Due to the relative lack of research exploring the experiences of
students with ASC in non-inclusive settings, a data-driven or inductive approach
to thematic analysis was selected, rather than a deductive or theory driven
approach (Joffe and Yardley, 2004).
Participants
The inclusion criteria for recruitment to the data corpus were: individuals studying
at an educational facility aged between 10 and 18 years; who had a diagnosis of
ASC (confirmed by a Statement of Special Educational Needs or an Education
Health Care Plan (EHCP)), and were considered by teachers and the interviewer
to have sufficient verbal ability to complete an interview. Individuals with a
diagnosis of learning disability were excluded.
Within the data corpus, participants were purposively sampled from secondary
schools across the south of England. This investigation was interested in exploring
the experience of students from settings that were not entirely mainstreamed
(either a unit or a specialist school). Overall, this included 49 participants in the
data corpus. For this data set, participants were included if they had completed
two interviews, on separate days, as this provided richer data. Transcripts from
sixteen participants were suitable for inclusion in the current investigation. Eight
participants attended a specialist school and eight participants attended a
18
dedicated unit within a mainstream school. Descriptions of participants included
in this investigation are reported in Table 1.
Table 1. Participant demographic details.
Participant pseudonym Age and gender School
Oliver 11 (m) Mainstream (Unit)
Jack 11 (m) Mainstream (Unit)
Charlie 13 (m) Mainstream (Unit)
Harry 14 (m) Mainstream (Unit)
James 14 (m) Mainstream (Unit)
Will 15 (m) Mainstream (Unit)
Emily 16 (f) Mainstream (Unit)
Henry 16 (m) Mainstream (Unit)
Chris 10 (m) Specialist (boarding student)
Brian 10 (m) Specialist (boarding student)
John 11 (m) Specialist (boarding student)
Adam 12 (m) Specialist (boarding student)
Lee 13 (m) Specialist (boarding student)
Martin 14 (m) Specialist (boarding student)
Peter 15 (m) Specialist (day student)
Steven 15 (m) Specialist (day student)
19
The ASC unit was based in a mainstream school located in the South of England.
A recent Ofsted report1 described this school as slightly larger than the average
size for a secondary school, and having a larger than average proportion of
children with SEN. The ASC specialist unit was attended by approximately 20
students, eight of whom consented to take part in the study, and was staffed by
teachers and support workers with experience in ASC. Most students attending the
unit divided their time between placement in mainstream classes and support
within the unit.
The specialist school was also located in the South of England. A recent Ofsted
report1 described this school as an independent specialist school for male students
with an ASC diagnosis. This school offers placements for just over 50 students,
ten of whom initially consented to take part. Two participants were excluded from
the initial data corpus as they provided limited responses with insufficient detail
for analysis. Approximately 80% of students who attended the school were
boarding students.
Material
Semi-Structured Interview. An interview protocol was developed for the first
interview (Appendix B). The protocol was designed in consultation with two
psychologists. It prompted the participants to talk about their family, interests,
strengths and weaknesses before asking about school and friends. Further prompts
questioned participants about their perception of having a diagnosis of ASC, how
20
they saw themselves compared to their peers and how their peers saw them, and
their hopes and fears for the future.
The second interview was intended to explore further areas of interest identified in
the first interview, so did not follow a protocol.
Procedure
The transcripts included in the data set were collected by two interviewers. Each
interviewer met with participants from one educational setting only. Both
interviewers had had the opportunity to spend some time in that setting
previously, so were familiar to the participants.
An information sheet (Appendix C) and parental consent form (Appendix D) was
sent by the school to the parents of students who met the inclusion criteria. If the
parents provided written consent, then individual students were approached by a
member of school staff, who explained the research and provided the student with
a copy of the participant information sheet (Appendix E). Interested participants
then met with the interviewer, who answered any further questions on the study
and requested written participant agreement (Appendix F).
Interviewers met participants in a private room on school grounds. They
conducted a semi-structured interview on the first occasion which lasted 30
minutes to one hour. The interviewer met with the participant again two months
later for the second interview. All interviews were recorded and later transcribed
by the interviewer.
Ethical Considerations
21
Ethical approval had already been granted by the University of Surrey Faculty of
Arts and Human Sciences Ethics Committee (Appendix G), and participants were
informed that their data may be used in multiple publications. Permission to use
the data was granted by the Chief Investigator (CI).
During the process of gaining consent, participants were informed of their right to
withdraw at any time. The participant was informed that they could request that
the interviewer stop or move on to another topic at any time. The interviewers
were aware of the need to discontinue questioning on a topic if a participant
became visibly distressed, and had identified a source of support for the
participants within the school if this occurred.
Confidentiality was preserved by using pseudonyms, and redacting the names of
schools, other services, or further information that could be used to identify
participants. Transcripts of interviews were stored on a secure University network
computer, or as encrypted files or on an encrypted USB stick during transfer.
Analytical Strategy
This data set was analysed following the thematic analysis process outlined by
Braun and Clarke (2006) (Appendix H). Separate thematic analyses were carried
out for each educational setting. The epistemological position of this investigation
was primarily a critical realist approach. This proposes that there is an objective
reality to social experiences, but there is a subjective construction of
understanding these experiences, based on the perceptions and discourse between
participants and investigator (Madill et al., 2000).
22
The process of analysis involved familiarisation through repeated reading of
transcripts, and making notes of interesting aspects of the data that related to the
research question. Brief summaries of each participant’s transcripts were also
produced at this stage (Appendix I). Units of meaning relating to the research
question in the transcripts were then labelled, referred to as coding (Appendix J).
Codes were clustered by similarity and theme headings derived from this, using
researcher judgment. Themes were checked for consistency against both the
extracts and the transcripts. Finally, themes were defined and illustrated with
extracts from the data, as presented in the analysis below (Appendix K).
Yardley’s (2000) and Braun and Clarke’s (2006) criteria for assessing rigour were
consulted, and a checklist of how these criteria were met can be found in
Appendix L. As qualitative research is unavoidably influenced by the perceptions
and experiences of the researcher who interprets the data, qualitative methods do
not claim to be objective, and reality is co-constructed rather than purely
representing the views of the participants. The researcher produced a reflexive
statement, identifying how their personal experiences may have influenced the
analysis (Appendix M). During the process of extracting codes and developing
themes, the CI and co-supervisor of this investigation were regularly consulted, to
ensure the analysis was coherent, consistent and transparent.
Analysis
Overview
The analysis is presented in both narrative and schematic form. This overview
provides a brief description of the super-ordinate and main themes that were
23
identified in both contexts. The thematic maps demonstrate the relationship
between the main and super-ordinate themes. Finally, a detailed description of the
analysis is presented, supported by quotes from the participants.
Participants who attended the unit saw themselves as being different to their peers
in the mainstream school, and similar to peers with ASC. They discussed their
self-comparisons with these peers in different ways. These formed the two super-
ordinate themes: Being different to mainstream peers and being seen as different,
and Being similar but better than peers with ASC.
Within the super-ordinate theme of Being different to mainstream peers and being
seen as different, there were three main themes. The first, Comparison of
capabilities and difficulties, was based on observable differences in skills and
abilities. Participants acknowledged their difficulties, but more frequently made
favourable self-comparisons. This interrelated with the next theme: Positioning
themselves in relation to difference: standing out or trying to fit in, where
participants usually presented difference positively, and associated it with being
more interesting than mainstream students. However, there was also a less overtly
voiced position that it was better to try to fit in to the mainstream setting and
minimize differences. Participants were also influenced by their perception of the
opinions of their peers, which formed the third theme: Awareness and response to
negative perceptions. In response to these perceived judgements, participants
either presented themselves as unconcerned and unaffected, or described a
retaliatory urge to prove their superiority.
24
In contrast, within the superordinate theme, Being similar but better than peers
with ASC, participants made comparisons based on similarities to peers, or to
people with ASC in general, forming a theme of Similarity and identification.
They also compared themselves favourably to peers with ASC, presenting ASC as
a dimension from ‘more’ to ‘less’ severe, and identifying themselves as being less
severely affected, forming the second theme Dissimilarity and superiority to low
functioning peers.
The analysis of the participants who attended the specialist school is presented as
similarly divided between the comparisons with TD friends, and peers with ASC,
consisting of two similar super-ordinate themes: Being similar to TD friends but
being seen as different and Being similar but better than peers with ASC.
Participants who attended the specialist school saw themselves as being
essentially similar to TD friends, and represented their differences as being minor,
or normal. This formed the theme: Emphasis on similarity to TD friends.
However, these participants also described being affected by the label of ASC, in
particular having an awareness of prejudice which resulted in being treated or
thought about as ‘different’, described as: Labelling leads to stigma. As a result,
participants showed some ambivalence about their willingness to disclose their
diagnosis.
The comparisons that participants from the specialist school made with their peers
with ASC were broadly similar to those made by participants attending the unit in
the mainstream school, forming two similar main themes: Similarity to peers with
ASC and Dissimilarity and superiority to low functioning peers.
25
Thematic Maps
26
Figure 1. Thematic map of participants from the unit.
27
Figure 2. Thematic map of participants from the specialist school.
28
Analysis of participants who attended the unit
Super-ordinate theme: Being different to mainstream peers and being
seen as different
Comparison of capabilities and difficulties: Just over half of the
participants acknowledged a balance between their relative strengths and
weaknesses compared to their mainstream peers: ‘In some ways they’re more
intelligent than me, but in other ways I’m 10 times as intelligent’ (Jack), although
three participants did not compare their abilities to those of mainstream peers.
All but one participant recognised that they had difficulties in some situations, but
very few participants expressed these as direct comparisons with mainstream
students. However, when participants talked about being ‘not very good’ at
certain skills, this required an implicit comparison to a standard that they
considered ‘normal’:
James: I call it [autism] a blessing and a curse (…) probably the curse
side of it is the fact of me not being able to do much with it, (…) cos some
of the things I can't do with the disabilities cos I can't talk to people in
the main school that well cos I don't really know them
Both Will and Jack downplayed the importance of these comparisons by
representing these difficulties as being caused by themselves and their mainstream
peers, rather than solely reflecting their own limitations. For example, Will
suggested that a contributing factor to his difficulties in social situations was the
29
sensitivity of mainstream peers, meaning their relationships were too volatile for
him to navigate:
Will: I think it's actually quite a lot of social situations because I mean,
like most friendships and that in the main school seem to be over rather
quickly which is sort of rather daunting because (…) I can't just redeem
those as quickly as they can because I don't think like they do
Interviewer: I see, so do you worry about making friendships and then
losing them or
Will: I just sort of because I mean a lot of the people in the main school
seem really, really sensitive so that's something that seems to be a bit of
a worry to be honest
All but one of the participants identified strengths, and spoke about these more
frequently than weaknesses. For example, nearly all participants described
themselves as more cognitively able or logical than mainstream peers in some
respects:
Jack: Like in group work in school or something like that I focus on
myself and I find that all of their ideas are absolute ****…. And mine
are right sort of thing and often that does actually work as that way
because I actually think about it logically and have a creative mind
compared to them
Three participants associated their strengths as being directly related to their ASC,
particularly when talking about developing a specialism or expertise:
30
Henry: You can become really specialised at something and really
advanced stages, like I'm really knowledgeable about tech and if I wasn't
on the autistic [spectrum] it would have taken me a lot longer to know
what I know
Positioning themselves in relation to difference: standing out or trying
to fit in. All but one participant acknowledged being ‘different’ to mainstream
students: ‘I’ve just realised, yeah okay, I’m gonna be different, that’s how I’m
gonna be’ (Emily). Whilst describing themselves as being different is a form of
comparison in itself, how participants positioned themselves in response to that
difference represented another form of self-evaluation.
Over half of the participants who acknowledged being different made at least one
positive comment about standing out from the mainstream. Harry, Emily and
James most frequently emphasised embracing difference as a positive personal
quality. Whereas being ‘normal’ was ‘boring’ (Emily), being ‘different’ was
presented as being ‘interesting’ (Emily) ‘special’ (Harry) or ‘unique’ (James):
James: Cos it just it's just like I like being different // if I didn't have
autism then it would be a bit more boring again I like being exciting and
unpredictable
However, there was a suggestion that this position had been adopted as a defence
or response to more negative appraisals. Harry, James and Emily each described
feeling a sense of pressure or exclusion in the mainstream school, but felt more
relaxed in the unit. This indicates that their attitude to being in a situation where
31
they were different was not consistently positive. Furthermore, being different
was not usually presented as a personal choice, but as being caused by their ASC.
Emily described that when younger she wished she had ‘never had it [ASC]’ but
now realised she ‘had to live with it’. This may imply that this position in relation
to being different was created as a way of accepting something that could not be
changed.
There were also occasions where participants acknowledged that being different
could be undesirable, and that being able adapt to mainstream social norms could
be seen as preferable. Although Jack, in the example below, does not make a
direct comparison between himself and his mainstream peers, his ability to fit in is
presented as a strength, in relation to a (less able) peer with ASC:
Jack: They could bully one of the boys in here, Bob gets bullied
Interviewer: Okay, and what do you think about that, other people
bullying?
Jack: I don't think it's right, but it's that kind of thing, when you're like
him and he has all of these different things that he does it shows him off
as being really nice and he can't understand that being so nice is
probably most likely going to get you bullied, like he says excuse me,
sorry and that kind of thing while walking through the corridor when he
slightly nudges someone when he's walking through, really, you just push
through ‘em all… You don't just go, sorry, sorry, sorry [said in a quiet
voice]
32
Awareness and response to negative perceptions. Over half the
participants disclosed a perception of how they were seen by mainstream peers;
this was almost always a negative perception. An exception was James, who
described a belief that he was also seen positively. Some participants, in particular
Emily, Will and James, described an approach whereby they ignored the attitudes
of their peers and denied that these attitudes affected them:
James: I've eliminated the fact that I don't care what people think of me,
they say you're weird and annoying and I'm like live with it if you have a
problem with that go deal with it it's not my problem
Despite this statement, James spoke frequently during the interviews about how
he thought people saw him. He was enthusiastic about being seen and admired as
different when it related to being unique, which then related to positive self-
comparisons (being interesting). However, he disliked being seen as different
when it related to his difficulties: ‘some people in the school give me sympathy
because of my disabilities and I don't like it cos I don't really like the attention’
which involved a negative self-comparison (being disabled). He described trying
to hide any difficulties that might prompt sympathy. This suggests that despite
claiming to be unaffected, James used his perception of how he was seen and
judged by peers to assess himself and guide his behaviour.
There was a suggestion that appearing unconcerned by negative opinions was a
defensive response to bullying. For example, Emily described using this during an
incidence of bullying:
33
Emily: cos I take things really personally, I used to take that really bad,
but now if someone calls me ginger in the corridor I laugh (laughs)… I
just laugh and it’s really funny
She continued to describe how this incident affected her:
Emily: but in the end I kind of swore at her and walked away… And then
I started crying, because that’s how personally I take things
This may suggest appearing unconcerned is a strategy, but does not reflect
genuine disinterest in how they are seen by others.
However, one participant described a more direct attempt to retaliate against
negative impressions. This was an overtly expressed desire to proactively
disprove them, and demonstrate superiority:
Jack: I want to be able to show them that you shouldn't mess with me
(laughs) You mess with me and then you're getting tackled [….] Cos
some of them just think of me as a stupid autistic kid sometimes, then I
wanna show them I'm not a stupid autistic kid, actually someone that can
ram you down and grab the ball off you and score a try
Jack also expressed the idea that physical superiority could protect against
bullying, as peers ‘don't bully me because I could probably crush them’. There
was evidence that some other participants had similar views. For example, James
spoke frequently during the interviews about being known within the mainstream
school for his angry responses to bullying and he appeared proud of his skills in
fighting, whereas Will described a verbal form of retaliation:
34
Will: I just sort of ignore it mostly because I mean there's very little they
can say that is anymore than just words which makes the whole thing
meaningless to me to be honest (…) Because I can use bigger words
against them
Ultimately, both ignoring and retaliating were a defensive form of responding,
suggesting it is possible participants utilised these approaches to protect their self-
esteem.
Super-ordinate theme: Similar but better than peers with ASC
Similarity and identification. All but two participants described some degree
of similarity or identification with peers in the unit. The exceptions were Jack,
who did not discuss similarity, and Charlie, who discussed similarity and
difference predominantly in the context of gaming skills; for example saying ‘The
[gaming] skill level has kind of balanced out a bit’ when asked how he saw
himself as similar to his friends in the unit.
Emily made the most comparisons based on similarity or identification with
people with ASC with fewest caveats:
Emily: I see people in the main school and I see people in here [the unit]
and in here it seems really normal for me cos where I’m like it as well
but in there [the mainstream] it’s just it’s a weird place (laughs)
Other participants made more specific comparisons, identifying peers with ASC
who they saw as having a similar level of ability, whilst distancing themselves
from less able peers:
35
Henry: Really it's down to the severity of it, like, people with a minor
case of it like I do and some of my friends they're, well I'm alright with
that because we actually cope with it
Another approach used by Oliver, Henry and Will was to identify with people
with ASC in the wider population. For example, whilst Will did not see himself as
very similar to peers in the unit, he still viewed himself as similar to the broader
ASC population:
Interviewer: it sounds like you see yourself as very different to those
people [peers in unit]?
Will: people will probably say that I am but I mean that doesn't apply to
all people who have autism at all I mean there could probably be (…) a
lot of people who are affected by autism in similar ways to me
This identification of similarity appeared to be associated with understanding of
ASC, in particular relating to their understanding of their difficulties. Three
participants described that people with ASC understood each other better, whereas
‘people who're not on the autistic spectrum might find it a bit hard to understand
people who are’ (Oliver), For half the participants, there was a perception that
their difficulties and strengths were related to ASC, or being ‘like most kids with
autism’ (Henry).
Three participants took this similarity further, and described having a sense of a
group identity with other peers with ASC from the unit. Emily spoke most
frequently about this group, although her views were shared by James and Harry.
Although not a direct comparison of similarity, this group identity was in part
36
based on all being ‘different’ to mainstream peers. This was associated with
‘difference’ being framed as a positive:
Emily: Yeah, they’re boring, we’re the different, we’re the awesome ones
(…)
Interviewer: That sounds like you see yourselves as a little group here,
Emily: Yeah. Yeah, we’re just like a group of autistic friends who just
like, who seem to be able to talk about anything and everything
It was possible that this group identity was partially formed as a reaction to
feeling uncomfortable with mainstream peers: ‘I'm fine talking to everyone in
here but out there they're the, they're normal people’ (James). As described
below, these three participants also spoke less about being dissimilar to ‘lower
functioning’ peers.
Dissimilarity and superiority to low functioning peers. In contrast to the
above, all participants except Emily and Harry also made downward comparisons
between themselves and other people with ASC. In general, these comparisons
were discussed in terms of severity, through terms such as ‘amount’ (Will),
‘minor’ (Henry) or ‘high on the [spectrum]’ (Oliver). James was an exception, as
although he described doing certain things better than peers or coping better, he
did not ascribe this to differences in severity of ASC.
As described by Henry, being less severe was associated with coping better and
having more control than less able peers.
37
Henry: Really it's down to the severity of it, like, people with a minor
case of it like I do and some of my friends they're, well I'm alright with
that because we actually cope with it, but I understand that they can't
help it, but ones that are complete are really severe they, some of my
lessons I'm with one of the students here that is really severe is in my
some of my lessons and it's really distracting and annoying and I've tried
to understand that he's, that they're not in any control of it…
Whilst most participants described superiority in terms of skills or behaviours,
Henry and Oliver also described the consequence of ‘coping better’, which they
associated with the perception that they were less vulnerable to the possible
negative consequences of having a diagnosis of ASC:
Oliver: so basically, it's like about 1 billion people around the world that
have autism and well, I feel kinda sad for them, that they're having to get
in the boat, to a, sort of bad time of life, because people with the autistic
spectrum, they get mad easily, if they can't do what they wanted to do
they just go to complete meltdown (…)
Interviewer: Right, okay. But I remember from last time that you think
it's pretty special, the skills you've got so
Oliver: It is pretty special, with the skills I've got, but other people out
there they might not have all of the best skills, but, they have, I'm hating
to say this, they'll have to do with what they've got and try and get the
best of out of it
38
Analysis of participants who attended the specialist school
Super-ordinate theme: Being similar to TD friends but being seen as
different
Emphasis on similarity to TD friends. Almost all the participants explicitly
described themselves as being similar to TD friends:
Interviewer: I mean when you think about having autism is there
anything having autism makes difficult?
John: Not really it doesn’t really, it doesn’t really make you much
different to anyone else, it doesn’t make you at all different to anyone
else, it’s just the same, just a different view of life I guess
Whilst participants did make upward comparisons to TD friends, they did not
directly ascribe differences in abilities as due to having ASC. Three participants
positioned their difficulties as the result of typical or normal individual variation
in ability, rather than a categorical difference between people with and without
ASC:
John: Anyone, you either shy, not very good at socialising or you can
walk into Tesco’s and start up a chat with some random guy in one of the
aisles…. you say excuse me and all of a sudden you’re talking like you've
know each other for the last twenty years…. I've never been good at that
I've taken a couple of weeks before I've actually sort of like got on with
people
39
For some participants, this meant they rejected being treated differently to the TD
population. Chris stated that he preferred to be treated ‘like normal’. Two
participants described a dislike of social skill lessons as ‘unnecessary’ (Adam) or
‘patronising’ (Lee), with Lee continuing to say ‘why should we (…) you wouldn’t
have social skills in a state school’.
Three other participants presented a slightly different view, stating that whilst they
had previously had difficulties and required additional help, they had now
overcome these difficulties. Although these are temporal comparisons between
their past and present abilities, rather than comparisons between themselves and
TD friends, the overall implication was that ASC had little impact on them
currently:
Peter: I wouldn’t say it [ASC] describes me (…) Yeah, I have autism (…)
But in I think it was twenty eleven I got an official slip saying that I was
cleared of, I think it was around eighty percent of my symptoms (…) And,
after that I’ve sort of taken a more relaxed view to it all. It doesn’t
matter whether you have autism or not
Participants did implicitly acknowledge that they were different from what was
seen as ‘normal’ but minimized the impact of this difference: ‘Nowadays they
[TD friends] don’t act differently to the way they would if I was normal. A lot of
my friends don’t know I have autism.’ (Martin). ASC was seen as having
relatively little impact on their relationships with friends outside of school:
40
Steven: Well I’ll give you an example, I have many friends outside of
school, I am a day boy I go home, they know I have got autism and they
don’t care. That’s it. Just because there’s this big word like “normal”
Labelling leads to stigma. Although participants from the specialist school
saw themselves as similar to TD friends, all but one perceived that other people
saw them differently and that this could lead to a negative prejudice from others:
Lee: they [TD population] don’t have this constant thing, you got, you’re
never gonna be as good, cause that’s what they’re essentially telling us
all the time, you’re never gonna be as good as a normal person. That’s
what and they don’t care, they say they’re not, that’s what they’re telling
us because they don’t let us go out on ourselves and there’s a
wonderfully staffed ratio. It’s, in a states school there’s a, there’s a one
to thirty
Participants from the unit and the specialist school described negative opinions
differently. Participants from the unit spoke about negative perceptions most
commonly in the context of school peers they knew and saw regularly. There was
little reference to wider prejudice, and some participants believed that adults
understood ASC better than their peers. By comparison, participants who attended
the specialist school spoke about prejudice as a wider social issue based on
misconceptions. Five participants from the specialist school made specific
reference to prejudices held by adults, and only Brian and Steven spoke about
prejudice exclusively in the context of friends their age. Over half the participants
attending the specialist school related this prejudice directly to the ‘label’ of ASC:
41
Peter: Autism, I’d say, most of all, it, it causes, a label (…).And, I think it
really saps a person’s confidence….Because most people have a
preconceived view of what autism is (…) Like, I’ll give you an absolutely
amazing example here. (…) I was gonna be fitted for a new school
uniform for this half term, so, went into the uniform shop, to be fitted and
as soon as I told the woman that I wanted a [school name] uniform,
immediately her tone, her pitching changed…You know, she slowed right
down
The exception to the above was Adam, who did perceive that people who were
aware of his label treated him differently, but suggested that this could be
advantageous as they were then less strict. Peter also presented a balanced view –
suggesting that some people ‘few and far between’ would be more receptive to the
ideas of people with ASC: ‘who will think, wow they have a different viewpoint’;
although he still suggested the most common response would be to ‘dismiss them
with patronism [sic]’.
Participants from the specialist school did make some references to stigma and
TD friends. Brian described having experienced rejection from TD friends when
disclosing his diagnosis. A few other participants described concerns that it may
change how they were seen by TD friends, meaning they would only disclose
their diagnosis to friends they trusted to ‘look past’ the ASC:
Martin: If they are gonna judge me they can judge me all they want I
don't really care, but the only reason, I know it sounds really
hypocritical I don't want to tell some of my mates, not to keep them as
42
mates, but rather I want them to think of me better the devil you know
almost, not telling anyone is not doing them any harm
Super-ordinate theme: Being similar but better than peers with ASC
Similarity to peers with ASC. Participants attending the specialist school
considered that having a sense of similarity or ‘fitting in’ with friends at school
was important. For example, participants described and valued friendships in the
school with peers who shared similar personal qualities to themselves:
Peter: Ok, I know there’s like sort of, when you get a good group of
friends going, they all sort of have a, a similar connection… (…) it’s like
one of those things where we’re all equal, we’re all individuals and
we’re all just able to relax when we’re around each other
Participants in the specialist school also used comparisons of similarity in a
different way to participants in the unit. For example, comparatively few
participants from the specialist school directly described similarity based on
shared experience of ASC as being important, or identified with the diagnosis of
ASC. For the few who did talk about ASC in terms of similarity, it was associated
with greater understanding:
Brian: I used to have a really good friends called A, he had autism as
well, and I find it easier to make friends if they have got autism as well.
Interviewer: That’s really helpful, why’s that?
Brian: I don’t know maybe because they understand, maybe because I
43
understand their issues and they understand mine. Because we both have
autism.
Some participants in the specialist school used perceptions of similarity as a
measure of, or motivation for, change. For example, Martin described himself as
having been similar to peers with ASC in the past, but ultimately compared
himself favourably in terms of how he had improved:
Martin: I used to hang out with a few down in [house name] but they
don’t really go out much, they literally just sit inside their life is
computers and stuff like that, I used to be a bit like that but I am getting
out a lot more
Martin described this temporal comparison as a retrospective realisation, later
stating that spending time with peers had helped him see how he was ‘worse back
then’. Conversely, a few participants saw some peers with ASC as role models.
Although not a direct comparison of similarity, there was an implicit suggestion
that they adapted their behaviours to become more like peers whom they
perceived as more able:
Adam: cause normally in S, which was my last house, I didn’t have any
furniture, I didn’t have a chest of drawers in my room myself cause I
trashed it. And now it’s that sort of realisation that it’s the big issue with
school, if anybody else had they really wouldn’t trash it so why would
you trash it? So like I’m getting to that stage where I’m realising what to
do
44
Dissimilarity and superiority to low functioning peers. All but two
participants who attended the specialist school compared themselves favourably to
peers with more severe ASC. In both contexts, participants described ASC as a
dimensional construct ranging from ‘high functioning’ to ‘severe’, and associated
with ‘High functioning autism’ as coping better, being more able and, in this
context, being granted more independence. ‘Severe’ or ‘low functioning autism’
was associated with significant impairments:
Brian: High functioning autism is like um where you um can do a lot,
people with low functioning autism um sometimes can't speak, can’t go
on computers, don't understand things
All participants from the specialist school who made comparisons with peers with
ASC made more downward comparisons than comparisons of similarity, except
for Adam who saw degrees of ASC as ‘unimportant’. ‘Lower’ functioning peers
were seen as needing more intervention or support, in contrast to the participants
themselves:
Interviewer: Did you ever go to social skills classes?
Martin: I think they did, it really really annoyed me because it felt really
patronising, but I understood maybe some kids might have found some
use out of it
Martin and Lee placed emphasis on both distancing themselves from more severe
peers with ASC, and being seen as different. Whilst Martin described an aversion
45
to being seen in public with friends who may make him look awkward, Lee
described frustrations with being treated the same as lower functioning peers:
Lee: They don’t know the difference between someone who needs (…) a
lot of support, like going to the toilet and can’t dress themselves, and
someone who’s a bit, (…), learns at a different pace, bit socially
awkward and they class them as the same. (…) You know, let’s put
people who need loads and loads of help, someone who is just a, not
trouble, just a bit different.
Despite minor differences, the tendency of most participants to identify peers or
groups of individuals who they described as less able or more severe than
themselves to compare themselves to favourably was consistent in both
educational contexts.
Discussion
The aim of this investigation was to explore how, if at all, context affected the
social comparisons made by students with ASC who attended either a unit in a
mainstream school or a specialist school. Two separate thematic analyses were
carried out on interviews with participants from each context. In both contexts,
participants made different comparisons with TD or mainstream peers than to
peers with ASC. When comparing themselves to peers with ASC, two themes
were identified in each setting; a theme based on similarity between themselves
and peers with ASC, and a theme based on favourable comparisons towards peers
with ASC who they saw as having more severe difficulties. There were notable
differences in how participants in each setting positioned themselves in regards to
46
peers without ASC. Participants from the unit emphasised being different, which
included both upward and downward comparisons. Conversely, participants from
the ASC school emphasised similarity to TD friends, and downplayed the impact
of ASC. Although participants in both contexts described an awareness of a
negative attitude towards ASC, they conceptualised this differently. Participants
in the unit described this in the context of bullying or perceived negative opinions
of their peers at school, whereas participants from the ASC school perceived this
as a response to the label of ASC, usually from adults or people who were not
close to them.
It has been suggested that social comparisons have less importance for people
with ASC, due to their theorised impairments in social understanding or social
motivation (Dvash et al., 2014). However, this investigation demonstrated that
participants on the ASC spectrum did use social comparisons in self-evaluation,
similarly to research by Huws and Jones (2015) and Hedley and Young (2006). In
this study, participants not only judged themselves relative to their peers, but also
made inferences about the perceptions their peers had of them. This information
appeared to influence their own self-judgement and how they positioned
themselves in response to this.
The ubiquity of downward comparisons to more ‘severe’ peers is similar to the
findings of Cooney et al. (2006), and Finlay and Lyons (2000) within the ID
population. Huws and Jones (2015), who interviewed participants from a
specialist college for ASC, also found evidence that participants presented
themselves as ‘less disabled’ than peers with more severe difficulties with ASC. It
47
has been proposed that downward comparisons can be protective of self-esteem
(Major et al., 1991; Wills, 1991), and a process by which a positive self-identity
can be constructed (Finlay and Lyons, 2000). However, Huws and Jones (2015)
suggested that participants used these downward comparisons to distance
themselves from their diagnosis, which could become damaging if participants
encountered a situation that challenged this self-perception, for example
experiencing greater difficulties than their peers in the future. This may have been
the case for some participants, such as Oliver, who described his skills as
protecting him from suffering like other people with ASC. However, in this
investigation there was also a theme of similarity and identification with peers
with ASC, and modelling the behaviour of peers with ASC, which does not
support Huws and Jones’ hypothesis.
Participants from the specialist school and the unit used slightly different types of
comparisons when describing themselves as similar to other peers with ASC.
Participants from the unit made references to ASC, or identified with the ASC
diagnosis. By comparison, participants in the specialist school very rarely
described ASC as an important aspect of their similarity. Groups formed by
adolescents are influenced by the school environment, and group membership
influences the self-perception of members (Brown and Lohr, 1997). It is possible
then that the increased identification with the diagnosis of ASC noted in
participants in the unit was due to belonging to a group defined by ASC diagnosis
within a mainstream setting, whereas participants at the specialist school formed
groups within a setting where a diagnosis of ASC was the norm.
48
Although participants from the specialist school rarely identified with the
diagnosis of ASC, they used upward comparisons with older or higher functioning
peers with ASC to motivate changes in behaviour, or as a role model. This is a
potential function of upward comparisons if the individual believes that change is
within their control (Major et al., 1991). In contrast, participants in the unit rarely
made upward comparisons to ASC peers. They did make upward comparisons to
mainstream peers, but did not usually describe using this to shape their own
behaviours. This may be due to their perception of difference from mainstream
peers, which could mean they thought these behaviours were out of their control.
In these circumstances, upward comparisons are more likely to reduce self-esteem
rather than prompt behavioural change (Major et al., 1991). It is also possible that
by emphasising difference, participants from the unit may have been minimising
the emotional impact of these comparisons (Major et al., 1991; Schmitt et al.
2006).
The perception of being different described by participants from the unit is similar
to attitudes described by ASC participants in previous qualitative research
(Carrington and Graham, 2001; Humphrey and Lewis, 2008; Saggers et al., 2011).
It has been suggested that perception of difference by students with ASC is
associated with depressive symptoms (Hedley and Young, 2006). In contrast, in
this investigation, participants from the specialist school saw themselves as
similar to TD peers and minimised differences, including representing their
difficulties as part of normal individual variability or as unimportant and having
little impact on them. It is possible that this may have an impact on the emotional
49
well-being of students, and further research is necessary to clarify the impact of
this.
When positioning themselves in relation to difference, many participants from the
unit in this investigation framed it positively, as being ‘special’ and ‘interesting’
and wanting to stand out. However, there was also some ambiguity, with a few
participants making comments which suggested that difference was something
that they were forced to accept or put up with, rather than something
independently valued. This is in contrast to the findings of Humphrey and Lewis
(2008), who found participants from mainstream schools primarily described
negative response to difference in terms of having a disability, and described
‘negotiating difference’ most frequently in terms of trying to fit in (encapsulated
by the key phrase ‘make me normal’), with little reference to the positive aspects
of being different.
Participants from both settings described different experiences of negative
attitudes. Participants from the unit primarily described negative attitudes as
coming from TD peers, with relatively infrequent reference to stigma in the wider
population. By comparison, participants in the specialist school experienced less
negative opinions from TD friends, although several perceived stigmatizing
attitudes from adults. It is possible that participants from the unit have more
experience of negative opinions or bullying from peers than participants from the
ASC school (Hebron and Humphrey, 2014; Zablotsky et al., 2014). It has also
been suggested that belonging to lower status groups within a school hierarchy
may result in lower self-esteem (Brown and Lohr, 1997). This suggests that
50
awareness of negative peer perceptions could potentially be damaging to students
with ASC in mainstream schools, where they appear to form a lower status group
within a wider hierarchy, unlike students from the specialist school.
Implications
The current investigation suggests that integration may inadvertently contribute to
feelings of difference. It is possible that this is linked to feelings of anxiety and
depression experienced by students with ASC, particularly in the mainstream
setting (Zainal and Magiati, 2016). Participants described coping with negative
perceptions from mainstream peers by ignoring them, which could increase
isolation and perceived difference, or by retaliating, which could sometimes be
seen as aggressive. Whilst a common target intervention has been to understand
(Bottema-Beutel and Li, 2015) and improve (Shochet, et al., 2016; Swaim and
Morgan, 2001) the attitudes of TD students towards peers with ASC, it may also
be necessary to address the perception of difference and of negative perceptions
held by students with ASC themselves and the influence this may have on their
behaviour.
This research also suggests the importance of developing a group identity with
other peers with ASC. Some participants from the specialist school described
using peers with ASC as role models. It is possible that integrated students with
ASC may benefit from the opportunity to model the behaviour of peers with ASC,
who are perceived to be similar to themselves, as opposed to mainstream peers
believed to be different from themselves. In addition, identification with peers
with ASC in the unit may have had an association with the development of a
51
positive self-identity of being different, unique and special, in contrast to the
negative perception believed to be held by mainstream peers. However, it is also
possible that this group identity emphasised feelings of difference from
mainstream peers. Structures in the school environment that facilitate group
identity for students with ASC, such as the unit, need to be further explored in
order to assess whether the potential benefits outweigh the costs.
It is important for mental health professionals to be aware of the possible impact
of educational context on the development of mental health problems. In this
investigation, whilst participants in both settings were aware of negative
perceptions, they experienced them as coming from two very different sources –
either their peers, in the form of bullying, or from society at large, in the form of
stigma. Both stigma and being bullied can be internalised, but may need to be
challenged in different ways. Perceptions of difference also emerged as an
important factor. Participants from the unit perceived themselves as different, and
while outwardly positive also suggested that this could be distressing for them –
feelings of difference have been associated with greater depressive symptoms
(Hedley and Young, 2006). On the other hand, participants from the specialist
school did not perceive themselves as very different, which may have been
associated with a lack of motivation to engage in social skill interventions. It may
be important for clinicians to address the perception of difference of an individual,
to ensure it is realistic, and neither distressing nor contributing to a rejection of
support.
52
Limitations
A potential limitation of this investigation was that the interviews in each setting
were conducted by two different interviewers. It is possible that differences in
interviewing style may have influenced the data that emerged. However, the
benefits of this approach were that each interviewer was working in a setting in
which they were familiar with the participants. This is likely to have helped build
rapport and produce richer data. Similarly, only two schools were included in this
analysis. It is possible that particular school characteristics or populations
influenced the experience of participants.
All but one of the participants in this study were male, which means that these
findings cannot be seen as transferrable to the female population. This imbalance
is not surprising in view of the finding that just over four males are diagnosed
with ASC to every female (Fombonne, 2009). Previous quantitative data has
suggested that there are differences in relationship style and experiences of males
and females with ASC in mainstream schools (Dean, et al., 2014), but gender
differences have rarely been researched qualitatively (Williams et al., under
review). This difference suggests there does need to be more work in this area.
Direction of future research
The current investigation did not explore the relationship between the social
comparisons of participants and symptoms of anxiety or depression. There is
evidence that students with ASC in mainstream schools experience greater anxiety
than those in specialist schools (Zainal and Magiati, 2016). Hedley and Young
(2006) discovered an association between social comparisons and depressive
53
symptoms, but only explored one educational context. It is possible that
differences in the types of social comparisons made in diverse educational settings
impact on the mental well-being of students. Future research could extend the
work of Hedley and Young (2006) into other contexts, for example exploring
whether social comparisons have a mediating or moderating effect on the
relationship between educational placement and symptoms of anxiety or
depression.
A further necessary question is how these comparisons change over time and at
different developmental stages from pre-school to a post-education setting. For
example, it is unclear whether participants perceiving themselves as similar to TD
populations is a protective factor against depression in the long run, or whether
participants are relying on an inaccurate or misleading self-impression which may
result in greater difficulties when they leave the context of full-time education (as
discussed in Huws and Jones, 2015). Further qualitative research exploring the
experience and types of social comparisons of participants from different
educational placements after leaving education may be helpful in clarifying
whether these differences persist and how participants adapt to a different social
context. Qualitative research is also required in primary school settings, where
participants may have different experiences of relating to peers.
In conclusion, this research suggests that educational context has an effect on the
types of social comparisons made by people with ASC, which has potential
implications for their emotional well-being and self-perception. Further research
54
into the impact of educational context on social comparisons is necessary in order
to develop the best practice for inclusion of students with ASC.
Notes
Information taken from https://reports.ofsted.gov.uk/ . School names withheld to
ensure confidentiality
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List of Appendices
Appendix A – Journal Guidelines………………………………………………..63
Appendix B – Interview Schedule
Appendix C – Parental Information Sheet
Appendix D – Parental Consent Form
Appendix E – Participant Information Form
Appendix F – Participant Agreement Form
Appendix G – Proof of Ethical Approval
Appendix H – Braun and Clarke (2006) guidelines for Thematic Analysis
Appendix I – Participant transcript summaries
Appendix J – Examples of coded extracts
Appendix K – Table of themes
Appendix L – Criteria for Assessing Qualitative Research
Appendix M – Reflexive Statement
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Appendix A – Journal Guidelines
Autism conforms to Sage UK Guidelines for manuscripts. The relevant guidelines
are included below.
Information was taken from:
https://studysites.uk.sagepub.com/repository/binaries/pdf/SAGE_UK_style_guide
_short.pdf
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Appendix B – Interview Schedule
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Appendix C – Parental Information Sheet
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Appendix D – Parental Consent Form
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Appendix E – Participant Information Form
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Appendix F – Participant Agreement Form
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Appendix G – Proof of Ethical Approval
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Appendix H – Braun and Clarke (2006) guidelines for Thematic Analysis
This appendix provides a brief overview of how the steps described by Braun and
Clarke (2006) were applied in this analysis.
1. Familiarising yourself with your data. This was achieved by reading and
rereading the transcripts, and making notes of initial ideas. Brief summaries of the
transcripts for each participant were also produced (Appendix H).
2. Generating initial codes. Extracts relating to the research question were coded
and all extracts collated.
3. Searching for themes. Similar codes were grouped together, which formed the
initial themes.
4. Reviewing themes. Extracts in each theme were compared to ensure the theme
was consistent and that there was minimal overlap. The transcripts were re-read to
ensure that the themes represented a coherent pattern of meaning in the data and
that the content of the extracts supported the themes. The thematic maps were
generated at this point.
5. Defining and naming themes. A theme table was produced naming and
defining the themes. A brief narrative overview was produced. At several stages,
this was presented to the CI and co-supervisor, who were familiar with the data
set. They provided critical evaluation of the coherency and transparency of the
themes. This was used to further clarify and re-define themes.
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6. Producing the report. The narrative analysis as presented above was
completed. This process was reiterative, the thematic map and theme definitions
were further developed during the production of the narrative analysis.
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Appendix I – Participant transcript summaries
Participants from the unit
Oliver. He described himself as ‘just like every other autistic person’ in terms of
getting mad, and talked about autism as a group he identifies with. He thinks he
has better skills than some other people with autism and worries about the ones
with fewer skills. He spoke about ‘basic’ and ‘advanced’ autism – advanced
involves co-morbidities; he has ADHD. He likes this as he feels anger makes him
feel strong. Autism is not ‘ordinary’ but autism is special to him, but he also
relates it to getting angry quickly and frustrated. Initially he saw autism as a
disease, but he felt calmer when he realised he was born with it and just had to
live with it. He talks about peers who are high in the autistic scales, who he finds
difficult. He thinks people who are not on the spectrum would find people with
autism harder to understand. He talks about his friend Charlie who is a few years
older but likes similar things. He talks to Charlie and askes for advice on
problems. There are some people he dislikes, based on looks and attitude. He is
worried that if he talks about his worries, peers in school will tease him and push
him around.
Jack. He described himself as not getting along well with peers his age, but
getting along better with babies/toddlers and adults, and that he is able to have
adult-to-adult conversations, which he relates to an ‘intellect thing’. Peers are not
as able to understand him, which is why he can’t get on with them. He wants to
show peers that he is not just some stupid autistic kid, but someone better than
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them. He described himself as being very different from his peers as he is more
active. He feels annoyed in mainstream, but it is not that he is bullied. Another
student is because he is too nice. Described autism as different levels and that he
has some disadvantages but also advantages (like funding for his career plan) and
being more intellectual, logical and creative than peers. He also described having
a fixed view that his way is ‘right’. He used to be more worried about autism.
Talked about bad experiences in a previous school and a good experience where
he was the ‘star student’. Spoke about the base as a mix of relaxed and hectic
close together. He doesn’t find group support helpful in the unit, and sees two
peers who use it as having a lot of problems. He also spoke about wanting to give
something back to people
Charlie. Mostly talked about games, he and his friends’ respective skills in
games, he feels they have similar skill levels, and he is slightly more skilled than
his friends in Mario 64. Talked about perspective and differences from friends,
but in terms of height. Some peers in the base can become annoying – a peer that
left used to help settle them down and was described as ‘our leader’. Described
himself as jumping from subject to subject, but that he is getting over this and his
brain has ‘files’ (not expanded upon). He thinks ‘growing up’ has helped him deal
with change. He also described sometimes tricking people. He does not
understand autism at all, and did not seem interested. He does not like a few
students in the main school, who disrupted him in lessons, but he likes some peers
in the mainstream who share interests with him. He doesn’t like social skills
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lessons, which he sees as a list of things he’s done wrong. He prefers not to think
about worries.
Harry. Worries about school, including how the other students would be.
Described that autism made him sad sometimes, as you don’t know what to do.
He used to feel strange or different to others as a child, and kept it in, but that
changed when he came to the base. He described not understanding autism at first
but understanding it more now. Autism makes you different, which is more
special and feels nice. He described himself as good at art. He sees himself as
similar to a friend with autism, and they help each other. She has helped him get
on with a teacher. He does not like the years 7s in school, or people who are
disruptive in lessons. He found it difficult when a teacher didn’t understand him.
He did not feel included when he was behind in lessons (and did not at the time of
the first interview go into the mainstream school)
Emily. Talked about anxiety getting in the way of things, such as attending
school. Talks to parents and teachers but not friends about anxiety, because
friends won’t understand. Her best friend has anxiety, so understands it better. Her
friend in this school is in the mainstream, and initiates meeting up. She prefers the
base because there’s less pressure than the mainstream, where she feels anxious.
She understands people with autism as having different ways of dealing with
things – she sees herself as similar to this. She describes a growing realisation of
having autism from her early diagnosis. She sees herself as part of a group of
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autistic friends who act quite differently to mainstream pupils. She described the
base as feeling normal to her and the mainstream school as weird: ‘we’re all
different, they’re [mainstream peers] normal, it’s boring’. She likes to be
different, particularly as she is the only girl with autism in the school. When she
was younger she didn’t like autism but now she realises she’s going to be different
and if people don’t like it, it’s their problem, although it upsets her when people
make fun of her. Previously hid diagnosis, but now open about it. In the main
school people don’t talk to her and they bully her (for hair colour), but she thinks
this is immature or pathetic.
James. Talked about Autism, ADHD and dyslexia, and finds dyslexia the most
annoying. He refers to his difficulties as ‘disabilities’. He’s fine talking to the
people in the unit but not the mainstream ‘normal’ people, who are described as
weird and less interesting. He enjoys being random, unpredictable and
imaginative. He can talk and play guitar in the unit as he doesn’t care, but feels
more pressure outside of the unit and won’t perform. Autism affects his ability to
be around other people. He described a growing awareness of how it affected him.
He likes to have autism as it means he is different and unpredictable, and he likes
to be unusual. He understands his peers in the base but thinks he himself is quite
changeable and that they don’t understand him. He has some friends in the main
school, which he sees as ‘probably only because [they know him due to his
behaviour]’. He thinks people in the mainstream know him more than he knows
them, due to his uniqueness, and he cares less about what people think of him in
the mainstream. He also described himself as better than the other boys in the base
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at talking to girls. He also described people trying to bully him, but he will
become angry and violent if they do. He thinks he has a reputation due to his
anger and random behaviour. He dislikes sympathy for being ‘weird’. In the
second interview he talked about a secret girlfriend, who didn’t want to be known
to date him and monitored him, and a fight with a boy with a knife. He described
feeling weaker when he has to rely on others.
Will. Described autism as a mental condition that affects his social skills, which is
‘partially’ true for him. ADHD overshadowed his autism originally, and he didn’t
know what autism was. He did not notice being different before looking up autism
and seeing how it applied (when younger). He still doesn’t personally notice his
quirks but realises his difficulties through his knowledge of autism. What’s
normal to him isn’t normal to others, but this may be to do with others as they act
strangely and illogically and they can’t understand him. He sees the people in the
mainstream as being sensitive. He dislikes people in the mainstream for being
ignorant or not understanding things that seem simple, and not being interested in
understanding and telling him to shut up. He sees mainstream peers who aren’t
interested in lessons as ‘isolated’ (not himself) because they are isolating
themselves from school/education. He can be bullied but feels able to retaliate due
to being cleverer. He described autism as too broad to be one condition ‘like
generalizing a house and a castle as just a building’. He describes his peers in the
base as being on the spectrum but all very different. He thinks some people will
see him as different to his peers, but there are other people with autism who he is
probably like. Autism diagnosis is positive as it means support. He sees himself as
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intelligent although doesn’t know if that is linked to autism. He has some
difficulties with people in the base, for example when they can’t accept they’re
wrong, which he links to ‘differing amounts of autism’. He likes watching people
to see the mishaps they get into, which he sees as rather stupid. However, he
worries about upsetting people so doesn’t say much in public (in the mainstream).
Henry. Spoke about primary school where he and another small group of special
needs kids were treated very stereotypically and not given a proper
education/results weren’t properly marked. He described his autism as minor, and
himself as similar to most kids with autism. He sees autism as relating to special
knowledge in one area and little knowledge in others, and autism was seen as a
mostly positive thing, although he worried about the future impact on him due to
stigma. He described minor cases as being able to cope with it, but severe cases
can’t, and he can find the severe cases in the base annoying. Two people annoy
him to the point of considering violence, but he doesn’t want to be seen as a
hypocrite. Swearing at school is the social norm. He worries about exams just as
anyone would.
Participants from the specialist school
Brian. Has quite a few friends in school, although some are sometimes enemies.
He sees himself as good at helping friends (including mainstream friends) and that
his friends help him (i.e. with socialisation). Autism is a problem for him
sometimes, including with making friends. It’s been harder to make friends as he
got older. But autism is also related to being intelligent and funny. Telling jokes
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helped him learn to take jokes better. He does not really think of the social skills
lessons as useful. He distinguishes between high and low functioning autism, but
thinks it’s easy for people to tell he’s high functioning. He is sometimes
embarrassed by his diagnosis in public and tried not to act ‘weird’. He has had
some bad reactions when disclosing autism
Lee. He has quite a few friends in school, argues with some of them. He has lost
mainstream friends due to being away a lot. He sees himself as being able to
advise friends and think social skills/encouragement should come from peers or
someone with autism. He thinks he has changed quite a lot since being at school
although not necessarily due to the school, and some problems have only arisen
since starting school. He distinguished between high and low functioning autism,
and described that people find it hard to believe he has Aspergers, and describes
himself as having ‘normal’ and ‘complicated’ facets. He also described concerns
about the ‘label’ of Aspergers and assumptions staff make about him and disliked
social skills lessons for this reason. He behaves differently at school than in
public. Sees his school as better than mainstream, but also sees attending school
as affecting his self-perception and as being unnecessarily restrictive. He was
critical of the ‘lodglings’ (younger students).
Adam. Has a few friends in school, and describes his friendships as up and down
but that they helped him fit in at school. He has mainstream friends at home,
which he sees as important for his independence as well as feeling liked. One of
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his friends he described as helpful, helping him stay in class, and he sees being
able to debate with friends as a useful life skill. He sees himself as always being
naturally good at making friends. He therefore sees certain social skills groups as
a waste of time. Autism as a diagnosis means people are less strict or pressuring,
but other people with autism can be annoying. Did not really comment much on
the different between high/low functioning autism
Chris. Talks about peers in school, but one child at school prevents him from
making friends, and he described himself as unsociable. His friends at school were
based on who he was in a house with. He speaks about a particular friend at home
who understands him. He speaks about violence at school and being picked on by
students, and lack of control over activities. Does not see autism as affecting him
at all, and prefers to be treated normally (which he thinks he is), although he later
states people treat him like an idiot. States that being in the school makes it
obvious he has autism. He does not like being different, and just wants a normal
life (not clearly related to autism). He was very sad about being away at school
and said that as there are less people in the specialist school it’s harder to make
friends or to learn or use social skills. He felt he already knew social skills.
John. Talks about having independence as not being totally idiotic and doing
dangerous things, therefore being allowed to go out alone, which is something that
has to be proven to staff. He also spoke about internet safety in terms of not being
‘dumb enough’ to get into trouble. Spoke a bit about friends at school, and how it
is important to help them and have each other’s back, and described needing
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friends as a pack instinct. He sees his current friends as very blunt, but thinks this
is helpful. He thought making friends was easier in the past as people were less
stigmatising. He was partially aware of his diagnosis of autism but did not think it
was important, and he believed that generally people did not believe in autism
which caused teachers to victimise him. He saw having autism as being the same
as TD people, except with greater extremes, particularly with understanding
lessons – for example, he would be either expert or have great difficulties.
Similarly, social skills were seen as something people are good at or not
(regardless of autism). He valued practicality of clothing or fashion choices over
appearance when out in public, for example being willing to look silly if it made
things easier or more comfortable for him.
Martin. Spoke about friends, but felt uncomfortable being in public with some of
his peers from school who act awkwardly, although he felt bad about admitting
that. He acts differently at school as he can get away with it. He had some friends
before, but stated he couldn’t really pick them and was reliant on them seeing past
autism. He tells some friends about autism, but not unless they ask, and very few
know. He told one friend so they would feel better about themselves, but mostly
worries they would change their view of him. He has been bullied in previous
schools, and discussed the difference between bullying and banter. He has lost
contact with friends at home due to the distance, and has less friends currently due
to the size of the school. He felt he had previously needed the school, but was now
simply committed due to coursework, and found the lack of privacy frustrating.
Saw himself as fortunate for being diagnosed, and said most people saw autism as
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being very good at one subject and not others. Discussed degrees of autism, and
that most people in the school were just awkward. Did not like to think about the
negatives of autism. Being in school has helped him think about his difficulties
when he was younger. Social skills lessons were seen as patronising, although he
thought other people benefitted from them and that he may have learnt without
realising it, but also that context was important and people behaved differently in
different places. He spoke about having to explain social conventions to his peers
e.g. with texting
Peter. Spoke about having friends in all years, who he feels are reliable and can be
trusted. As a day student, he sees people outside of school, but has lost contact
with mainstream friends. He enjoys seeing friends, as they help him relax and feel
positive. Sees some students in the school as lacking ambition. He doesn’t see
autism as defining him and described being cleared of most symptoms, and
doesn’t see autism as important. However, he does feel the label of autism saps
people’s confidence. People respond to him differently when they know what
school he goes to (including teachers at drama school), and he thinks that people
have a misconception of autism promoted by the media. A few people become
more receptive of his ideas when they hear he has autism, others are more
dismissive. Parents of friends have been pitying or discriminatory. He described a
pattern of being sent home from mainstream schools or finding excuses not to
have him. He has told some friends, but if they back off after being told, he
decides they probably weren’t good friends. He also described some kids in the
school as deliberately trying to ruin things for him. He thinks social skills lessons
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were pointless, as they were obvious or detached from the real world, but gave
him the idea of a positive internal dialogue
Steven. Sees himself as easy going. Talking about friends, and his girlfriend. He
has friends at home he sees as he is a day boy. He is happy for them to know
about autism, and thinks this improves trust. He does not see autism as a big deal.
He discussed degrees of autism (and other conditions) and that he seems ‘pretty
normal’. He changes how he is in relation to context (i.e. staff being present).
Spoke about being kicked out of schools in the past. He felt he learnt social skills
from being around staff
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Appendix J – Examples of coded extracts
Example of transcript from the unit (Emily)
100
101
Example of coded transcript from specialist school (Lee)
102
103
Appendix K – Table of themes
Table 2: Table of themes for participants from the unit
Super-ordinate
theme
Theme Definition
Being different
to mainstream
peers and being
seen as different
Comparison of capabilities
and difficulties
‘In some ways, they’re
more intelligent than me,
but in other ways I’m 10
times as intelligent’
Participants compare
themselves to mainstream
peers in terms of differing
abilities and skills
Positioning themselves in
relation to difference:
standing out or trying to fit
in
‘We’re special, they’re
boring’ vs ‘I try to adapt’
Participants speak about how
they feel and react to being
different to mainstream peers
and their opinions on
difference, either being happy
to ‘stand out’ or changing
their behaviour in order to
adapt
Awareness and response to
negative perceptions
‘Some of them just think of
me as a stupid autistic kid’
Participants describe their
perception of their peers’
attitudes towards themselves,
and how they response to this
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Being similar
but better than
peers with ASC
Similarity and
identification
‘I’m like every other
autistic person’
Participants make
comparisons between
themselves and peers with
ASC or other people with
ASC in terms of similarity
Dissimilarity and
superiority to low
functioning peers
‘It’s down to the severity
of it’
Participants distinguished
between degrees of ASC and
made comparisons between
high and low functioning
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Table 3: Table of themes for participants from the specialist school
Super-ordinate
theme
Theme Definition
Being similar to
TD friends but
being seen as
different
Emphasis on similarity to
TD friends
‘It [ASC diagnosis]
doesn’t really make you
much different to anyone
else’
Participants emphasise
similarities to neurotypical
peers, including downplaying
differences or difficulties
Labelling leads to stigma
‘you can’t get rid of the
label off your head and
people treat you
differently’
Participants describe the
impact of having a label,
including the expectation that
people will treat or think of
them differently when they
are aware that you have
autism
Being similar
but better than
peers with ASC
Similarity to peers with
ASC
‘I understand their issues
and they understand mine.
Because we both have
Autism’
Participants make
comparisons between
themselves and peers with
ASC in terms of similarity
Dissimilarity and Participants distinguished
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superiority to low
functioning peers
‘People need to learn that
there’s a difference
between someone who, low
functioning autism, and
high functioning autism’
between degrees of ASC and
made comparisons between
high and low functioning
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Appendix L – Criteria for Assessing Qualitative Research
Two approaches to addressing quality in qualitative literature were consulted to
ensure the quality of this investigation. These included Yardley’s (2000) criteria,
and the checklist for assessing quality outlined in Braun and Clarke (2006). This
appendix provides further details on the process of analysis, relating to these
criteria.
Yardley (2000) criteria for quality
Sensitivity to context: A review of previous literature in this area has been
conducted by Williams, Gleeson and Jones (under review) and Roberts and
Simpson (2016). These provided the broad background context for this research.
The literature in the area was also used to inform the research proposal and
introduction to this investigation, providing further context and to refine the
research question. This led to the choice to use the theoretical concept of social
comparison to provide context and focus for the analysis. The discussion section
of this report places the results of this investigation in context with the wider
literature base.
Details of the schools of included participants were established through recent
Ofsted reports, and some details included in the method section in order to
illustrate the context of the participants. A reflective statement is included in the
appendices (see Appendix J) and was used to ensure the researcher’s own context
and position is transparent, including how this may have influenced the analysis.
108
Commitment and rigour: Transcripts were read and re-read to ensure familiarity.
Coding was a reiterative process to ensure that coding was rigorous and complete.
The guidelines of Braun and Clarke (2006) were used to guide this analysis and
the CI and the co-supervisor of this investigation were consulted at regular stages
throughout this process. In addition to the steps identified by Braun and Clarke
(2006), individual summaries of each participant were produced, in order to
ensure familiarity and that the analysis was grounded in the context of each
participant’s individual experiences. As themes were identified, they were
presented with extracts to the CI and co-supervisor to ensure that they represented
a meaningful pattern in the data.
Transparency and coherence: A reflective statement of the researcher’s own
context is included in the appendices (see Appendix J) to illustrate how the
researcher’s own assumptions and context may have influenced the analysis. Open
discussion with the CI and co-supervisor of this investigation was used to ensure
the development of themes and super-ordinate themes was transparent and that the
themes reflected meaningful patterns in the data. Quotes have been used in the
analysis to demonstrate and illustrate the themes. Previous appendices show both
coded extracts and a table of themes with extracts for further illustration of how
these themes were extracted from the data.
Impact and Importance: In the discussion, the analysis is placed in context of the
literature base and implications for practice and future research. The practice of
integration in schools has important implications for the wellbeing of people with
ASC and it is important that their experiences are explored and understood.
109
Braun and Clarke (2006) checklist for quality:
Transcription: Not applicable – transcription completed prior to investigation
Coding: Transcripts were repeatedly read and coded. The coding process
was checked by the CI and co-supervisor for this investigation, both of
whom are familiar with the transcripts. Development of themes was
checked by the CI and co-supervisor and discussed, in order to ensure that
the themes identified were supported by the data. All extracts relating to a
theme were collated and compared for overlap.
Analysis: Data is analysed in narrative form in the results section, with
illustrating extracts, to demonstrate the analysis process. Additional
material is included in the appendices.
Overall: The CI was consulted at regular stages during the analysis
process to ensure it was not rushed or superficial. Themes are described as
being actively defined by the researcher.
110
Appendix M – Reflexive Statement
The purpose of this statement is to identify the experiences and pre-existing
judgments that may have influenced my interpretation of the data and my
analysis.
The most significant potential influence is my experience of Special Educational
Needs, particularly ASC, within education. This experience is both first- and
second- hand. An early influence on my opinions of education was my mother,
who worked through most of her career in some capacity as a SEN teacher and co-
ordinator in schools. My mother was open about her opinion of SEN in education,
expressing a needs-based approach, supporting integration for many students but
being outwardly critical of a ‘one size fits all’ policy which meant pupils with
more complex needs were left to struggle in a partially-integrated or mainstream
setting. This is likely to have shaped my own opinions and values towards the
ethical and practical implication of integration in education. I may have been more
sensitive towards identifying the difficulties and concerns of participants from the
unit, for example.
I later went on to work within a private charity-funded residential college for
young people with epilepsy and complex needs. The values of this organisation
were based around a focus on the needs of the individual, improving their
independence and quality of life. I was also aware of the limitations and
legislations attached to the role of staff in educational and care contexts. When
interpreting the transcripts of participants from the specialist school, this
knowledge and experience may have affected how I interpreted their frustrations
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with staff members, restrictions of the school context and limitations of their
independence. I may have seen these as an unavoidable aspect of residential
education for people with SEN, primarily dictated by legislation and school
management teams. It is therefore possible that I underestimated the importance
of these factors to the students.
My background regarding ASC has primarily been clinical, usually in a mental
health or residential setting. This could suggest I was more likely to focus on and
emphasise the importance of descriptions of difference, disability and strengths, as
these are the factors which are most commonly addressed in clinical practice.
Prior to my training, I completed a Masters on Mental Health in Learning
Disabilities at Kings College London. This course had a largely biomedical
influence and many of our lectures and courses were psychiatrist led. In particular,
the teaching on ASC had a focus on the diagnostic criteria, and the cognitive
models of ASC with focus on the deficits and difficulties. It is possible I was
predisposed to view participants with ASC as ‘different’ and more sensitive to
those expectations from participants.
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Research Proposal
An Investigation into the Personal Characteristics of Individuals with
Intellectual Disabilities Associated with Understanding Reciprocal Roles in
Cognitive Analytic Therapy
2,957 words
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Introduction
Background and Theoretical Rationale
Psychological Therapies and Intellectual Disabilities
There has been limited research into which personal factors predict the readiness
of individuals with Intellectual Disability (ID) to engage effectively with
psychotherapy (Taylor & Lindsay, 2008, Royal College of Psychiatrists, 2004).
Previously proposed relevant personal factors have included motivation and
confidence in self-efficacy, as well as cognitive factors such as communication
skills, monitoring thoughts and emotions, relational “more” or “less” judgments,
and identifying emotions (Willner, 2006; Hatton, 2002). In addition, for
individuals with co-morbid developmental disorders such as Autism Spectrum
Disorders (ASD), cognitive abilities such as Theory of Mind (ToM), meta-
cognition and flexibility may also be contributing factors (Donoghue, Stallard &
Kucia, 2010).
In a previous literature review on this topic (see Appendix A), the findings from
peer reviewed journals have suggested that receptive vocabulary is associated
with the ability to understand the core concepts of Cognitive Behavioural Therapy
(CBT) (Dagnan et al., 2000; Joyce et al., 2006; Oathamshaw and Haddock, 2006;
Sams et al., 2006). A few studies identified that a diagnosis of ASD was
associated with worse therapeutic outcome (Sex Offender Treatment Services
Collaborative – Intellectual Disabilities (SOTSEC-ID), 2010; Heaton and
Murphy, 2013). However, this literature review also identified that the majority of
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papers in peer reviewed literature have focused on the CBT model. Verbal IQ or
receptive vocabulary, and general IQ, have been investigated, but not the wider
proposed range of cognitive abilities: such memory, attention, flexibility of
thought, and Theory of Mind (Hatton, 2002; Donoghue, Stallard & Kucia, 2010).
A conclusion of this review was that further research is required to explore further
therapeutic models, and should consider a wider range of cognitive factors.
Cognitive Analytic Therapy and Intellectual Disabilities
Cognitive Analytic Therapy (CAT) is a possible alternative model to CBT for an
ID population. CAT integrates cognitive and psychodynamic concepts to explore
the procedural sequences of behaviour, from external factors (i.e. events or
context), to the mental process (beliefs, values, aims), to the action (including
selecting and playing a role in the relationship) and finally evaluates the outcomes
or consequences of the action (Ryle & Kerr. 2002). The advantage of using CAT
in an intellectually disabled population is that the process is simple; as it is
descriptive, collaborative and structured and explicitly focused on the “Zone of
Proximal Development” (or what is within an individual’s ability to achieve with
assistance), which are important concepts for this client group (Ryle & Kerr,
2002). The tools of CAT can be easily modified to support the clients
understanding (i.e using recordings of letters and representing reciprocal roles
with symbols or pictures) (Ryle & Kerr, 2002) There is a preliminary case
evidence of the efficacy of CAT in this population (David, 2009; Clayton, 2000).
One of the core concepts of CAT is the development and experience of
“reciprocal roles”. In this context, a “role” may apply to an action, a state of mind
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or a state of being linked to the memories, affect and expectations of the
individual. Roles are “reciprocal” as they are dyads, acquired through
socialisation with others - the action or ‘Top’ role, and the ‘acted on’ or ‘Bottom’
role. For example: “Abusing” to “Abused”. A person acting “domineering” (Top
role) may elicit another individual to adopt either a “compliant” or “defiant”
Bottom role in response. Individuals may also switch between Top and Bottom
roles (i.e. a person who experiences abuse may respond by being abusive to
others) (Ryle & Kerr, 2002, Lloyd & Potter, 2014). A previous study has
examined what cognitive abilities are associated with the understanding of
reciprocal roles, and found that non-verbal reasoning skills were associated with
the ability to match the symbol of a Top role to Bottom roles, but verbal
comprehension was not (Lloyd, 2014). This is in contrast to the previous research
in CBT, and may suggest CAT is a valid alternative for clients with greater verbal
impairment.
A limitation of this study was that participants were only required to match the
Top to Bottom role, or “doing” to “done to”, and did not explore the ability of
people with ID to match Bottom to Top roles. However, the aim of therapy is to
assist the individual to identify how their response has been elicited in order to
start identifying more adaptive procedures (Lloyd & Potter, 2014) which requires
matching a Top role to a given Bottom Role, reversing the chronological order of
events. It should not be assumed that matching Top to Bottom and matching
Bottom to Top roles are equivalent tasks, or that they have equivalent cognitive
demands. Further research is required to identify if individuals with severe ID can
116
match the Bottom to Top role, and whether the same cognitive abilities are
required.
Theory of Mind and Cognitive Analytic Therapy
A further limitation of the previous research into matching Reciprocal Roles in
CAT was that it excluded participants with ASD. This is an important limitation
because it is likely that there are additional barriers to engaging in therapy in ASD
(Donoghue, Stallard & Kucia, 2010), and previous research has suggested that
individuals with ASD and ID show less improvement following psychological
intervention than those without a diagnosis of ASD (SOTSEC-ID, 2010; Heaton
and Murphy, 2013).
As CAT is a relational therapy, it relies on the understanding that one person’s
actions can influence another’s experience (Lloyd & Potter, 2014). This is
significant, as many, if not all, individuals with ASD have difficulties with
“Theory of Mind” (ToM) (Baron-Cohen, 2000). Theory of Mind is the ability to
attribute mental states (including thoughts, beliefs, motivations and emotions) to
oneself and others (Premack & Woodruff, 1979). In the typically developing
population, an argument has been made that the ability to understand mental states
influences both the course of clinical symptoms and the course and basis of
intervention (Sprung, 2010). In particular, the extent to which the understanding
of reciprocal roles (a form of relational pattern) is associated with the
development of ToM is unclear, and requires further research.
Research Question
117
The research question is whether receptive vocabulary, non-verbal reasoning and
Theory of Mind ability are associated with Reciprocal Role comprehension in
people with severe ID.
If the non-verbal measure of intelligence is associated with performance in the
reciprocal roles task and the verbal comprehension measure is not, this will
replicate the pattern of results found in previous research (Lloyd, 2014). The
current investigation also aims to extend previous research by including a measure
of ToM, and including participants with impaired ToM functioning (i.e.
participants with ASD). If ToM is required to understand the concept of
Reciprocal Roles in CAT, then participants who score higher in the ToM battery
would be expected to perform better in the Reciprocal Roles task.
Method
Design
This study will use an investigation cross-sectional design
Participants
The sample will consist of adults with severe ID, with a roughly equal number of
participants with and without a diagnosis of ASD. Participants with profound
learning disability will be excluded from the sample. Sample size was calculated
using G*Power (Erdfelder, Faul, & Buchner, 1996; Faul, Erdfelder, & Buchner,
2007). This calculation used an estimated effect size of 0.27 (based on the
correlation co-efficient of the previous research (Lloyd, 2014)), an α of 0.05 and a
β of 0.8, and a Linear Multiple Regression model with four predictors (Receptive
118
Vocabulary, Non-verbal Reasoning, ToM Battery score and age (control)). This
recommends a sample size of 50. Participants will be recruited through the clinic
lists of clinicians to Aldershot Hospital Learning Disability department, Local
Authority Day Centres for adults with ID, and National Autistic Society Day
Centres in Aldershot contacted with assistance from Field Supervisor Dr Julie
Lloyd. This is a similar sampling frame to the previous research, which recruited
30 participants for the study.
A review of recruitment over twenty years of research within a developmental
disabilities program found that studies had a 41.8% to 100% participant
approached/participant consent success rate. Rates of consent were increased if
the participant was approached by the researcher rather than a third party, and
with less invasive research (Cleaver, Ouellette-Kuntz & Sakar, 2010).
Measures
Reciprocal Roles Task: In the present study, analysis will be performed by
including the score on a Reciprocal Roles Task as the dependent variable in the
multiple regression model outlined above. As there is no standardized tool to
measure understanding of Reciprocal Roles, this study will adapt the stimuli and
procedure from Lloyd (2014) and using the Recipricol Roles that Psaila and
Crowley (2005) identified as relevant to the Intellectually Disabled population.
This will involve participants being presented with the Bottom role of a reciprocal
role, and being asked to select the corresponding Top role from a two distractors –
another Top role, or an “unconnected” distractor in nine trials (see Appendix A).
In the previous study, out of nine possible matches, participants matched correctly
119
in a minimum of three to a maximum of eight trials, and most participants
(33.3%) matched correctly in six out of eight trials. A Chi-squared test suggested
that the pattern of results was not due to chance (Lloyd, 2014).
Theory of Mind battery: See Appendix B for details. The ToM battery
includes a diverse desires task, a diverse belief task, two false belief tasks (the
Smarties test and the Sally Anne task), a visual perspective taking task (the Card
task), a knowledge task (the Mary and John task), and a situation and desire-based
emotions task. The ToM battery tasks were selected to cover a range of ToM
tasks, with a range of ability but intended for early stages of development (based
on Wellmen & Lui, 2004 and Charman et al. 2000).
British Picture Vocabulary Scale and Raven’s Coloured Progressive
Matrices: The British Picture Vocabulary Scale – Second Edition (BPVS-II)
(Dunn, Dunn, Windsor & Burley, 1997) is a receptive vocabulary task, where
participants select the picture which matches the spoken stimuli from a multiple
choice of four, with an administration time of 10 minutes). The BPVS-II has also
shown to have a significant correlation (r = 0.61) with non-verbal estimates of
mental age suggesting that it is a valid measure of developmental ability, the same
paper reports that the BPVS has been found to have good reliability (median split-
half reliability of 0.86) (Glenn & Cunningham, 2005)
Ravens Coloured Progressive Matrices (RCPM) (Raven, 1995) is a non-verbal
perceptual and conceptual visuospatial reasoning task (Lezak, 2004). Participants
are required to indicate which of six multiple choice items completed the missing
section of a pattern, with an administration time of 15 – 30 minutes. A recent
120
Australian study in a typically developing population found a split-half reliability
of between 0.81 to 0.90 (dependant on age group) using the Spearman-Brown
formula (Cotton et al, 2005) Comparison of item responses on the RCPM between
typically developing and intellectually disabled samples suggests that the RCPM
has similar psychometric properties across both populations (Facon, Magnis,
Nuchadee & De Boeck, 2011).
Both the BPVS and RCPM tasks were included as a replication of the previous
investigation. As the norms for both these tasks are no longer valid, raw scores
will be used and age included as a control variable.
Procedure
Following recruitment by clinicians or through the day centre, information and
participant/caregiver information sheets on the study will be provided for parent
or carers. Participants will be provided with information sheets using words,
symbols and pictures, and the research will be explained in simple terms. Consent
from parents and carers will be sought at this point.
Participants will be seen in an environment familiar to them. Participants recruited
through clinics will be seen in the hospital. Participants from day centres will be
seen in the day centre where possible.
Participants will be provided with information sheets using words, symbols and
pictures, and the research will be explained in simple terms. Consent from parents
and carers will be sought at this point. Initially participants will be assessed using
121
the protocol by Arscott, Dagnan and Kroese (2010) (see Appendix C).
Participants who can consent will continue with the study
Participants will complete the Reciprocal Roles task and ToM tasks initially, in
counter-balanced order across participants, to prevent order effects. Participants
will then complete RPCM and BPVS-II in counter-balanced order.
Ethical Considerations
The ethical issues of research in a vulnerable population such as individuals with
ID are complex, and require balancing the need for protection against the cost of
excluding this population from research samples (Iacono, 2006) The British
Psychological Society (BPS) ethical guidelines on research (BPS, 2011), and
guidelines for participants who cannot give fully informed consent (Dobson,
2008) have guided the consideration of the ethical issues involved in this research.
Consent: Participants should be supported to understand to the best of their
capabilities about research – where a capacity assessment suggests participants
cannot consent, a person with a caregiving responsibility for that individuals
should be consulted on their behalf (Dobson, 2008). For the purposes of this
study, both proxy and individual consent will be sought. This study will provide
information sheets for parents and care-givers, before seeking consent.
Information will be presented participants verbally, and in information sheets
including symbols to support communication and aid recall, where possible in
conjunction with a family member or staff member familiar with the participant,
to aid communication (Cameron & Murphy, 2006). In addition to seeking
caregiver consent, this study will use the Arscott, Dagnan and Kroese (1998)
122
protocol for consent to psychological research by people with an ID. This consists
of six questions (see Appendix C), for each question, participants can give a
response showing a full or partial understanding of the study (one point) or
showing no understanding of the topic (no point response).
Confidentiality: Patient confidentiality should be protected throughout the
research process (BPS, 2011). The response forms will be identified with a unique
participant number rather than any identifiable information. The report will only
include summarised data and the results of analysis - raw data will be kept
confidentially, in a password protected file or an encrypted memory stick, and
only accessed by myself or my supervisors. In case information needs to be
identified at a later stage (i.e. later withdrawal of consent), a list of participant
names and numbers will be kept confidentially by myself on an encrypted
memory stick
Best Interest of Participants: The clinical value of this research is that it aims
to further inform the clinical decision making of clinicians when choosing the
appropriate psychological therapy for an individual, and ensure interventions are
targeted more effectively (Royal College of Psychiatrists, 2004). The benefit of
the intervention is that the tasks are non-intrusive and can be presented as puzzles
or games, which may engage the interest of the participants.
R&D Considerations
This proposal will be submitted to the National Health Service Ethics board.
Following approval, the proposal will also be submitted to the Surrey and Borders
NHS Foundation Trust Research and Development Office.
123
Data Analysis
The results will be analysed using a Stepwise Multiple Linear Regression, as this
enables the identification of which predictor explains most variation in the
outcome variable, with reduced influence of collinearity (or correlation between
predictor variables). Response data will be examined for normal distribution, or
skewness, kurtosis and outliers, to ensure it meets the assumptions of a continuous
measure. Where viable, data may be transformed using a log transformation to
ensure a normal distribution. The raw data set for outlying data will be examined
and outliers may be removed if there is reason to believe the responses were
invalid (i.e. lack of comprehension of task instructions).
Consulting Interested Parties
In order to ensure the best interests of participants have been considered,
consultation will be sought from relevant groups. This may include parents and
carers, who may be contacted through Local Authority Support Groups. It will
also be important to consult staff at the day centres, who are involved in caring for
individuals with severe ID and may be involved in the recruitment process. The
role of consultation will be to ensure that the best interests of the participants have
been considered and the research protocol meets the needs of the participants
(Dobson, 2008).
Contingency Plan
124
One potential difficulty may be the duration of the testing session, which may lead
to fatigue or loss of interest in participants. The contingency plan in this situation
will be to reduce to ToM battery, retaining the Smarties test, the Card task and the
situation and desire based emotions task. This can then be used as a categorical
measure of participants who passed or fail the criteria of the ToM task. This has
the advantage of taking less time to administer; although this is less sensitive to
individual differences in ToM than a larger battery of tests. If a categorical ToM
measure is used, then a Multiple Linear Regression with a categorical predictor
will be used.
Another potential difficulty may be that the outcome measure cannot be treated as
a continuous outcome (i.e. if a large number of the participants score zero). It may
then be necessary to treat the outcome measure as an ordinal variable, and logistic
regression will be used as an alternative.
Dissemination Strategy
The final paper will be submitted to publication in a peer reviewed journal
specialising in ID research, such as the Journal of Intellectual Disabilities. The
paper may also be published in the disciplinary magazine for Cognitive Analytic
Therapy, Reformulation. Results may be fed back to fed back to parents and
carers via Local Authority Support Groups, to parents and carers and staff at
Local Authority Day Centres. It may also be possible to present the results to
practitioners at the CAT for Intellectual Disabilities Conference organised by the
Association of Cognitive Analytic Therapies.
125
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Literature Review
A systematic review into the personal characteristics of individuals with
intellectual disabilities associated with the ability to benefit from
psychological intervention.
7,139 Words
132
Abstract
There is debate in the literature over whether individuals with Intellectual
Disabilities have the cognitive skills or abilities required to engage and benefit
from psychological therapy. The literature around this subject is briefly discussed,
and a search strategy was employed to identify research papers investigating the
association between personal characteristics of individuals with Intellectual
Disabilities and either a) efficacy of a therapeutic intervention, or b) therapeutic
skills. Most of the papers investigated IQ or verbal comprehension within, and a
Cognitive Behavioural Therapeutic approach or therapeutic skill. The results
provide preliminary evidence that verbal ability is associated with therapeutic
efficacy and therapeutic skill, but this result was not consistent. The limitations of
the literature and implications for clinical practise are discussed.
Statement of Journal Choice
This literature review has been written in a format appropriate for submission to
the Journal of Intellectual Disabilities. This peer-reviewed journal was selected as
it focuses on the target population of this literature search, and accepts both
research and novel additions to the literature, including publishing reviews. The
guidelines for manuscripts are found in Appendix A and can been found online at
http://www.uk.sagepub.com/msg/jid.htm#PEERREVIEWPOLICY
Introduction
Intellectual disability is a condition where an individual has an IQ of less than 70,
difficulty functioning in at least two significant areas of life, and the onset of these
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difficulties was before the age of 18 (American Psychiatric Association, 2013).
People with intellectual disability experience a high rate of psychiatric co-
morbidity. A review of epidemiological studies found that point prevalence varied
from 14.4% to 28%, and reports of lifetime prevalence could be as high as 49.2%
(Smiley, 2005). A point prevalence study conducted in the general population in
Glasgow found co-morbid rates of between 15.7% to 40.9% depending on the
criteria used to determine diagnosis (Cooper et al., 2007).
Despite the high rate of mental illness, it has been argued that psychological
interventions in Intellectual Disabilities are under-researched (Royal College of
Psychiatrists, 2004; Taylor and Lindsay, 2008). There have been several reviews
into the efficacy of psychological interventions in the intellectual disability
population. A recent meta-analysis by Vereenooghe and Langdon (2013)
examined 14 papers on mainstream psychotherapeutic approaches, and found a
moderate effect size (g = 0.682) suggesting that psychological therapy was
effective for individuals with intellectual disabilities. Ten years earlier, a review
of papers from a thirty year period selected using more inclusive criteria, also
found an overall moderate degree of effectiveness (Prout and Nowak-Drabik,
2003). These reviews show a consensus that psychological interventions, in
particular cognitive behavioural interventions, have preliminary evidence to
support efficiency. However, this conclusion is based on a relatively small
number of papers (Prout and Nowak-Drabik, 2003; Vereenooghe and Langdon,
2013).
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Taylor and Lindsay (2008) theorise that research in this area is under-developed
due to "therapeutic disdain”, and the perception of clinicians that individuals with
intellectual disabilities lack the cognitive skills to benefit from psychological
therapy. In addition, Sturmey has argued that the quality of these studies are poor:
including misclassifying behavioural interventions as "cognitive" or "cognitive
behavioural" interventions, or failing to provide a clear distinction between the
contribution of the cognitive aspects and behavioural aspects of Cognitive
Behavioural Therapy to therapeutic change (Sturmey, 2004; Sturmey, 2006). This
has prompted rebuttals supporting psychological therapies for individuals with
intellectual disability (Tylor, 2005) and criticising the denial of “unobservable”
cognitive variables (Lindsay, 2006), and questioning the validity and
appropriateness of behaviourally based interventions (Emerson, 2006).(P
Sturmey, 2004)
Included within this wider debate is the issue of whether individuals with
intellectual disabilities have the personal characteristics and capabilities required
to engage in non-behavioural psychological therapy. The Royal College of
Psychiatry recommended that patient characteristics that predict or are related to
therapeutic success should be identified, in order to target psychotherapeutic
interventions effectively (Royal College of Psychiatrists, 2004: page 22). A
survey of Clinical Psychologists and Psychiatrists working in intellectual
disability services suggests that they believe that therapeutic effectiveness
decreases with lower IQ of the client. The level of disability, the perceived
therapist competence and diagnostic overshadowing (as measured by comparison
of responses to two vignettes) were all considered by clinicians to be more
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important than efficacy of therapy or availability of trained clinicians (Mason,
2007).
However, it is not clear from empirical research which capabilities or personal
characteristics are necessary to engage in psychological therapies. Willner (2006)
argues that in addition to verbal ability, participants with intellectual disabilities
are likely to have difficulty with the other prerequisites for cognitive therapy.
These include “psychological mindedness” (being able to understand the
mediating role of cognitions between situation and response), their confidence in
their self-efficacy (ability to cope with their emotional state), and motivation (as
clients with an intellectual disability are more likely to be referred by staff or a
carer rather than electing to attend therapy, and the client may not see the benefits
of change). Similarly, Hatton (2002) argued that the important pre-requisites for
Cognitive Behavioural Therapy would be:
Communication skills
Cognitive aptitude (i.e. the ability to monitor one’s own emotions,
thoughts and behaviours; the ability to apply relative judgement such
as “more” or “less” anxious; and memory)
Ability to identify emotions
Ability to understand the CBT model.
It is also important to consider the aetiological diagnoses or developmental
disorders associated with Intellectual Disability. For example, Autism Spectrum
Disorders (ASD) commonly overlaps with intellectual disability, present with
additional challenges, and have a high psychiatric co-morbidity (Matson and
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Shoemaker, 2009). Donoghue et al. (2010) discusses barriers to engaging with
CBT in an ASD population, including difficulties with theory of mind tasks
(identifying emotions and cognitions in themselves and others), meta-cognition
and cognitive flexibility.
There is little guidance available for practitioners on which clients would be
suitable for psychological interventions. Taylor and Lindsay (2008) have
previously explored the issue of which cognitive abilities were associated with
treatment efficacy in CBT and concluded that clients have demonstrated ability in
therapeutic tasks (linked to verbal ability) but that verbal ability alone could not
predict outcome in treatment efficacy studies. However, this review was limited in
terms of focus on IQ and verbal ability only, whereas Hatton (2002) and Haddock
and Jones (2006) propose a range of client characteristics and abilities that should
be considered .A survey of practitioners providing CBT for individuals with
intellectual disability reported that most did not specifically assess cognitive
deficits prior to deciding on an intervention, but considered a range of
characteristics as potential exclusionary criteria. These included language skills,
psychosis, lack of motivation, ASD, and ability to understand the core concepts of
CBT, including cognitive mediation. Some practitioners expressed willingness to
attempt CBT with clients with more severe intellectual disabilities (Haddock and
Jones, 2006).
As argued by the Royal College of Psychiatrists (2004) greater clarity in this area
of research could lead to more efficient targeting of interventions and provide
guidance for practitioners’ clinical judgement. The purpose of this literature
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review is to specifically examine in greater depth which client characteristics are
associated with either the efficacy of psychological therapy, or performance in
tasks associated with psychological therapy, in individuals with intellectual
disability.
Method
Data Collection
For this review, the following search terms were used: ("intellectual disability"
OR "learning disability" OR "mental* retard*" OR "developmental* disab*" OR
"cognitive disability" OR "mental* handicap*" OR "developmental* delay*" OR
"mental* impair*" OR "intellectual* impair*") AND ("Cognitive Therap*" OR
"Cognitive Behavio*r therap*" OR "Psycho* Therap*" OR psychotherap* OR
"Mindfulness" OR "Cognitive Analytic Therapy" OR "Interpersonal Therap*" OR
"Relational Therap*" OR "Psych* Intervention" OR "group therap*" OR "family
therap*"). Search terms were entered into three databases: Medline (EBSCO
Host), Psych Info (Pub Med) and the Cochrane database, and results were limited
to “peer-reviewed journals” within the date range 1990 to 2014. This returned a
total of 1,970 papers (including duplicates).
Studies were then screened by title and abstract, and duplicates were removed.
The remaining 54 papers were screened in full. The references of papers were
hand-searched to identify further potentially relevant articles.
When selecting relevant papers, the following criteria were applied: studies were
included if:
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The sample was diagnosed with intellectual disability or drawn from
an intellectual disabilities service
The paper investigated a mainstream therapeutic model (other than
purely behavioural interventions) (i.e. CBT, Cognitive Analytic
Therapy (CAT), Interpersonal Therapy (IPT), and Dialectical
Behavioural Therapy (DBT) or Mindfulness)
The paper investigated at least one client characteristic relating to
either treatment efficacy or a required therapeutic skill (including but
not limited to IQ and verbal comprehension, theory of mind,
executive function, memory, and diagnosis).
Studies were excluded if:
They were not presenting novel research (i.e. descriptive papers,
professional opinion, reviews, policies, protocols).
The focus of the intervention was staff teams or families (i.e.
psycho- education for staff and families)
The paper reported on a purely behavioural intervention.
The paper reported a case study, or used a qualitative research
methodology, as these are subjective or individualised, and it is
therefore difficult to draw conclusions pertaining to the population
as a whole.
The numbers at each stage can be seen in the QUOROM diagram (Figure 1).
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Data Extraction
Demographic information was extracted including mean IQ (or equivalent
measure), mean age, gender, how participants were diagnosed with intellectual
disability, co-morbid psychiatric diagnosis, or aetiological diagnoses (including
ASD and Downs Syndrome). Location, and the service the sample was taken
from, was also recorded. Ethnic background information was only reported in a
very small number of studies, and was not related to the effect of therapy or
therapeutic tasks. Where the paper included a control group, only the intervention
group demographic information is reported, as analysis between client
characteristics and therapeutic effectiveness was only carried out on the
intervention condition.
The psychological approach of the intervention or therapeutic skills was also
recorded, and reported in the main text of the review. How participant
characteristics were measured, how outcome was measured, and the results of the
analysis between participant characteristics and outcome measures were also
extracted.
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2 additional papers identified
through hand-searching
54 Papers screened for
inclusion/exclusion criteria
13 papers
43 Papers excluded:
13 were not novel research
19 examined treatment efficacy but not associated patient characteristics
1 Qualitative
7 were Case Studies
3 were excluded on the basis of the study population, or intervention
Discarded following title and abstract screen:
530 (Medline Proquest)
1,240 (PsychInfo EBSCO Host)
120 (Cochrane)
16 removed as duplicates
Results of Literature Search by Database
554 papers (Medline Proquest)
1,277 (PsychInfo EBSCO host)
129 (Cochrane Library)
Figure 1: QUOROM Diagram of Literature Search Conducted April 2014
141
Results
Of the 54 potentially relevant papers identified in the literature search, 13 did not
present novel research (including descriptive papers, narrative or systematic
reviews, study protocols, and expert opinion). One reported qualitative outcomes,
seven were case studies or series of case studies, and 19 examined the efficacy of
an intervention but did not report on the relationship between intervention
efficacy and patient characteristics. Only thirteen papers were identified that met
the criteria of this literature search. All but one paper investigated either a CBT
therapeutic intervention or therapeutic skill. See Figure 1 for the QUOROM
diagram.
The results have been divided into papers investigating the outcome of an
intervention, and the papers investigating a therapeutic skill. Papers were
appraised following guidelines provided by Ajetunmobi (2002).
Client Characteristics and Efficacy of Intervention
Nine papers examined the outcomes of an intervention. Four examined CBT
group intervention for anger and aggression (Willner et al., 2002; Rose et al.,
2005; Willner et al., 2013; Hagiliassis et al., 2005), and two examined individual
CBT for anger and aggression (Taylor et al., 2005; Taylor et al., 2009). One
examined individual DBT for challenging behaviour (Brown et al., 2013). Two
examined the results of a CBT group intervention for sex offenders - using the
same sample at different follow-up periods (Sex Offender Treatment Services
Collaborative – Intellectual Disabilities (SOTSEC-ID), 2010; Heaton and
Murphy, 2013).
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A summary of the demographic information of the studies can be found in
Appendix B. Papers that compared a treatment and control group conducted the
analysis of the relationship between client characteristics and change in outcome
measures within the intervention group only, consequently only the demographic
information and sample size of the intervention group is reported.
Only six papers reported or measured IQ using a recognised IQ test: the Wechsler
Abbreviated Scale of Intelligence (3rd edition – WAIS-III) (Weschler, 1997) was
used in four papers (Wilner et al., 2002; Taylor et al., 2005; Rose et al., 2005;
Taylor et al. 2009), and the Wechsler Adult Intelligence Scale (WASI) (Wechsler,
1999), in two papers (Taylor et al., 2005; Willner et al., 2013). The British Picture
Vocabulary Scale was also frequently used (Dunn et al., 1982). In those papers
that reported an IQ, the range was similar – the mean IQ for participants was
usually within the range of mild intellectual disability (63.9 to 68), with a
maximum full-scale IQ of 83 in the SOTSEC-ID sample (Willner et al., 2002,
SOTSEC-ID, 2010; Heaton & Murphy, 2013) and 95 in the DBT study (Brown et
al., 2013)- this participant was an outlier and had a diagnosis of ASD, which may
explain their inclusion in the study, but remaining IQ range varied from 80 to 40.
This suggests the majority of participants in these papers were mild or borderline
intellectual disability.
Analysis of papers
Full details of the analysis can be found in Appendix C.
Willner et al. (2002) examined a group CBT intervention for anger with fourteen
participants, of which seven were randomly allocated to the intervention group.
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Participants were all identified as service users, but there was no further
information on how they were diagnosed with intellectual disability. Intervention
consisted of nine two-hour weekly sessions, and two self-report and one staff-
report anger rating scale were taken at pre-intervention, post-intervention, and a
three month follow-up. The ratings for the treatment group decreased significantly
more than in the control group. The participant characteristics investigated was IQ
(Verbal, Performance and Full-Scale IQ). Full-Scale IQ correlated significantly
with improvement, but this appears to be due to association between verbal IQ
and outcome (r = 0.95, P < .01) and performance IQ showed no significant
correlation. However, this analysis was under-powered (n = 7), making it
vulnerable to Type I errors and also less likely to be generalised to the population.
Furthermore, this study did not report the occurrence of psychiatric or aetiological
diagnoses, which may be a potential confounding factor.
Rose et al. (2005) examined a group CBT intervention for anger and
aggression with 75 participants (36 waiting list control (treatment as usual) and 50
intervention – 11 participants from the waiting list control group proceeded to the
treatment condition). Participants were not randomised to condition. The
intervention consisted of 16 two-hour weekly sessions. Outcome was measured by
a single self-report anger rating taken at four time points: referral, prior to the
group, completion of the group, and a three to six month follow-up. The overall
analysis found a significant treatment effect, but also that only eleven individuals
in the treatment group achieved reliable change according to criteria proposed by
Jacobson and Truax (1991). This paper the client characteristics of receptive
vocabulary, age, gender in addition to external factors such as experience of the
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therapist and presence of accompanying staff members. Although receptive
vocabulary emerged as a significant predictor in the regression between pre- and
post- intervention scores, presence of an accompanying staff member contributed
more. The overall regression was not significant, and there were no significant
predictors at the three- to six- month follow-up. The authors suggest this may be
due to the contribution of predicting factors they had not identified. This paper has
several significant weaknesses: although participants were registered intellectual
disability service users, there was no further information on how they met the
criteria for an intellectual disability diagnosis and this paper also did not report a
measure of IQ. There was also no information provided on psychiatric or
aetiological diagnosis, which may have been a confounding factor. The paper also
relies on a single self-report anger scale to measure clinical change, rather than an
objective measure of outcome.
Hagiliassis et al. (2005) also explored a group CBT for anger and
aggression intervention. The overall sample was 29 participants, randomised to
treatment condition or comparison group. Fourteen participants were including in
the intervention sample. The authors aimed to include a range of intellectual
disability, and included participants with moderate to severe intellectual
disabilities, and participants who primarily used non-verbal forms of
communication. The intervention consisted of 12 weekly sessions of 2 hours,
Outcome measures were two self-report scales, including the Novaco Anger
Scale, taken at pre-intervention, post-intervention, and four month follow-up. The
client characteristics investigated included receptive vocabulary and non-verbal
reasoning, as well as age, gender, and primary mode of communication. Of these
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factors, only non-verbal reasoning was significantly correlated to change in
Novaco Anger Scale (pre and post intervention) (r = -56, p < .05), and the only
covariate to significant explain variance in anger rating scores in a multiple
regression model R2 = .309, β = -.556, p = .036). The sample size for this paper is
relatively small, and the authors did not report aetiological diagnosis.
Furthermore, analysis relied on a single self-report measure. However, the range
of intellectual disabilities was wider than previous studies and included severely
intellectually disabled participants.
Taylor et al. (2005) examined individual CBT for anger and aggression,
delivered in 18 twice-weekly sessions to forensic inpatients. Participants were
randomised to treatment condition, and 16 completed treatment. Self- and staff-
rated anger scales were taken at screening, pre-intervention, post-intervention and
four month follow-up. The overall analysis found a significant treatment effect at
follow-up. As a post-hoc analysis, participants who completed treatment were
divided into groups based on being “above” or “below” the median IQ, and
comparing the change in rating scales, and those below the median showed greater
improvement between pre-treatment and follow-up anger inventory scores (p
= .038), in contrast to previous research. However, this method of analysis is less
sensitive to individual variation than a correlational analysis, and in addition the
small sample size may increase vulnerability to individual outliers. This paper
identified that 69% of the sample had a psychiatric disorder (affective, psychotic
or personality disorder) but did not utilise this information in analysis.
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Taylor et al. (2009) extended this research, using the same model of individual
CBT for anger and aggression. This paper was a cross-sectional design, with all
participants completing treatment. Data was taken by self-report scales including
the provocation inventory and Novaco Anger Scale, and an observational measure
completed by ward staff. Ratings were taken at baseline (four to ten months
before treatment), pre- and post- intervention, and 12 month follow-up.
Participants did not improve significantly between baseline and pre-intervention,
but did between pre-intervention and post-intervention or follow-up. This paper
focused on verbal IQ only, using both a linear regression and dividing the group
into “above” and “below” the median and comparing using independent t-tests. In
both cases, only the association between Verbal IQ and the Novaco Anger
Cognitive Subscale) was significant (r = 0.315; p < .005; t(81) = 2.90, p = .040).
This suggested that verbal IQ was associated with greater improvements from the
cognitive aspects of therapy. However, the mean of the cognitive subscale for the
“below” median IQ group was higher at the follow-up assessment, which the
authors attribute to suggesting the difference in time taken to assimilate the data.
The sample of this investigation was larger, therefore the investigation more
robust, than the previous study (Taylor et al. 2005,) and includes an objective
measure of outcome. However, the study similarly lacks aetiological or
psychological diagnosis information.
Brown et al. (2013) examined an adapted DBT program providing one hour of
individual DBT and one hour of skills training a week. All 40 participants were
undergoing long-term treatment (mean 6.9 years, standard deviation 3.5 The rate
of change suggested challenging behaviours reduced more rapidly in the first year
147
of treatment than subsequent years, but this was not statistically significant when
robust standard errors were used. The amount of time clients spent in forensic
settings or seclusion also reduced during treatment, by an average of 228 days
fewer a year. The client characteristics explored in this paper were full-scale IQ,
age, self-injurious behaviour and five co-morbid psychiatric diagnosis, taken from
client records. Age, self-injury and psychiatric diagnoses (except conduct
disorder) were significant covariates of change, but Full-Scale IQ was not. A
weakness of this study is that although participants were taken from an intellectual
disability service, only 82.5% had an IQ lower than 70 and the IQ of participants
ranged from 40 – 95, which limited the generalizability of the results. Although
18% had a diagnosis of ASD, this diagnosis was not included in analysis.
Willner et al. (2013) conducted a cluster randomised control trial with participants
from day services across Scotland, England and Wales. The sample initially
included 181 participants, 91 initially included in the treatment group. Baseline
characteristics are reported in table 1, although due to drop out rates only 72
participants’ data were included in the final analysis. The intervention consisted of
twelve two-hourly psycho-educational group sessions delivered weekly (with
homework). Outcome measures were collected before randomisation (baseline),
16 weeks after randomisation (after treatment), and 10 months after randomisation
(follow-up), by researchers theoretically blinded to treatment conditions (although
interaction with service users could reveal treatment conditions). The overall main
effect suggested significantly lower aggression at 16 weeks, but not at 10 months.
The client characteristics investigated included IQ, receptive vocabulary, age, and
gender. None of the personal characteristics correlated significantly with the
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outcome measures, except full scale IQ and key worker provocation inventory
ratings – neither receptive vocabulary nor age correlated significantly. This study
provided stringent criteria, but did not provide the details of aetiological
diagnoses.
The SOTSEC-ID sample was drawn from across the UK, co-ordinated by a
collaborative group (http://www.kent.ac.uk/tizard/sotsec). Treatment consisted of
group CBT for sexually offending behaviour, consisting of one two-hour session a
week for a year. The initial sample consisted of 46 men, assessed at baseline (start
of the group), end of the group, and a six month follow-up (SOTSEC-ID, 2010).
This paper reported that 91% of participants were formally diagnosed with
intellectual disability (84% in childhood). This study also reported aetiological
diagnosis, including that 21% had a diagnosis of ASD. Rates of psychiatric
diagnosis were also reported, with the most common being personality disorder
(31%). Thirty-four participants were also assessed at a minimum of nine months
follow-up (the mean follow-up period was 44 months) (Heaton and Murphy,
2013). In both papers, rate of offending had significantly reduced following
intervention. The client characteristics investigated included IQ (verbal,
performance and full-scale), receptive vocabulary, and diagnosis. The analysis
demonstrated that a diagnosis of ASD was significantly related to higher
offending (p = .02, p = 0.001 respectively) although the authors have noted that
due to the relatively low number of individuals who re-offended, this result should
be interpreted cautiously, but verbal comprehension and IQ were not. This study
used objective outcome measures, rather than relying on self-report tools.
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Summary
Verbal intelligence or verbal comprehension was the most frequently identified
personal characteristic relating to the efficiency of therapy, or to therapeutic skills.
However, in the former case this relies on the results of three papers, one of which
is under-powered (Willner et al., 2002), one of which relies solely on a self-report
measure (Rose et al., 2005), and one of which only found an association in with
the cognitive sub-scale of a self-report measure (Taylor et al. 2009). This result
was also not replicated in a larger trial, although this trial did identify Full Scale
IQ as a potentially significant factor (Willner et al., 2013). One further study, that
included a broader range of IQ, found that receptive vocabulary was not
significantly associated with therapeutic change, but there was a significant
association with non-reasoning ability. It is possible that this may be due to many
of the sample relying on non-verbal and pictorial methods of communication.
By comparison, another study and follow-up found no association with any IQ
measure (SOTSEC-ID, 2010; Heaton & Murphy, 2013), although it is not clear
whether this is due to the difference in treatments (CBT for anger and aggression
verses sexual offending behaviour), the difference in length of treatment (16
weeks compared to a year) or the difference in sample characteristics. Similarly, a
study into DBT approaches found no effect of IQ, but a significant effect of
psychiatric diagnosis, although whether this was due to the different therapeutic
model or length of treatment is unclear (Brown et al., 2013).
Whilst Rose et al. (2005) and Willner et al. (2013) relied on a single self-
report Anger or Provocation Inventory as a primary outcome measure. Willner et
150
al. (2013) concluded that this type of measure was ineffective as it relies on using
hypothetical scenarios and so requires perspective-taking skills. None of the
papers above investigated the impact of perspective-taking or theory of mind as a
potential confounding factor or independent variable. These inventories also
require verbal comprehension skills to complete, and the ability to distinguish
between intensity of emotional states, for example “very angry” and “quite angry”
(using pictorial expressions as cues), which requires specific cognitive skills
(Hatton, 2002). This may have inflated the association between verbal
comprehension and outcome.
Inventories also primarily measure feelings of anger, and may
underestimate changes in coping strategies (Willner et al., 2002), particularly as
these papers did not include an observational or objective measure. Three papers
did use additional staff report inventories to support their conclusions (Taylor et
al., 2005; Willner et al., 2002; Willner et al., 2013). By comparison, Taylor et al.
(2009); SOTSEC-ID (2010), Heaton and Murphy (2013) and Brown et al. (2013)
studies included objective measures of outcome (i.e. observation measures, re-
offending rates or staff incident reports) which may have contributed to the
difference in results.
Some studies found associations between other personal characteristics and
treatment efficacy. In Brown et al. (2013) a younger age and diagnosis such as
Borderline Personality Disorder, self-injury or aggression were related to
significantly greater reductions in challenging behaviour. Similarly, the SOTSEC-
ID (2010) and follow-up (Heaton and Murphy, 2013) found that a diagnosis of
151
ASD was associated with further offending behaviour at the six month and the
extended follow-up, although they acknowledge that the relatively small number
of ASD participants may have influenced the results. A common weakness in the
CBT for anger and aggression papers was the failure to report or control for
aetiological or psychiatric conditions, so further conclusions cannot be drawn at
this stage.
It is not possible from these results to reach a consensus on which patient
characteristics are associated with therapeutic effectiveness, but verbal
comprehension and diagnosis have been shown to be potentially significant.
Personal Characteristics and Therapeutic Task
Performance
Four papers investigated the relationship between personal characteristics and
performance in therapeutic tasks or skills (Dagnan et al., 2000; Joyce et al., 2006;
Oathamshaw and Haddock, 2006; Sams et al., 2006). All papers investigated the
core therapeutic tasks or skills that theoretically underpin the CBT model, and
used a similar cross-sectional study design. See Appendix D for demographic
information.
All papers used a similar measure of emotional recognition, and also a task
developed by Reed and Clements (1989) where participants are asked to identify
the emotion produced by a scenario. Three out of four papers also examined
identifying the emotional response to an activating event, and cognitive mediation
using the same method (Sams et al., 2006). These tasks are based on the “ABC”
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model of cognitive therapy, where “A” is the activating event or situation, “B” is
the belief or cognitive mediation, and “C” is the consequence, or emotion. For
cognitive mediation, participants both identified the emotion that would follow an
event and a belief (If A and B, then C) and identified the belief that mediates
between an event and a given emotional response (If A and C, then B). Emotional
responses (or C) could be “congruent”, or expected given the situation (or A), or
incongruent. For example, the congruent emotional response to winning a race
would be happy, and the incongruent response would be sad. In order to measure
these concepts, Dagnan et al. (2000) created a cognitive mediation task where the
participant was presented with an activating event (i.e. “you lose at a game of
cards”) and a consequence (happy or sad) and were asked to pick a belief, or they
were given a congruent belief “… and you think I’m bad at things” or an
incongruent belief “… and you think I’m good at things” and were expected to
pick the appropriate emotion. The three papers used similar counter-balancing
techniques to counteract order presentation of congruent and incongruent
conditions. In addition, Oathamshaw and Haddock (2006) developed a
questionnaire (presented verbally) asking participants to identify which statements
were thoughts (i.e. “this is hard”), feelings (i.e. “I am sad”) or behaviours (i.e.
“talking to a friend”). By comparison, Sams et al. (2006) did not explore cognitive
mediation, but examined the discrimination between thoughts, feelings and
behaviours, developed for use in children (Quakley et al., 2004).
All three papers used the same measure of receptive vocabulary (BPVS), although
Joyce et al. (2006) included the Communication Assessment Profile for adults
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with a mental handicap and Sams et al. (2006) also included a measure of IQ
(WASI).
Analysis
See Appendix E for details for details on the analysis.
Dagnan et al. (2000) found that more participants could identify the emotion
given a situation (75%) than could pass the cognitive mediation task (identifying a
belief, given a situation and an emotion (25%), or identifying the emotion, given
the situation and the belief (10%)), but participants who passed the Reed and
Clements task were significantly more likely to pass the cognitive mediation task.
In both cognitive mediation tasks, more participants passed the congruent than
incongruent conditions, but this was only significant for the “If A and B identify
C” task, which was passed by only 10% of participants, while only one participant
passed the incongruent sub-test in this category, whereas 10 participants could
pass the congruent “If A and C, identify B” task. Receptive vocabulary was
associated only emotional recognition with the ability to pass the incongruent
cognitive mediation task. This paper had a relatively lax inclusion criteria,
including not controlling for aetiological or psychiatric disorders, or experience
with CBT. Dagnan et al. (2000) used counterbalancing to account for the order of
presentation for the stimuli. This study has several weaknesses: apart from being
under intellectual disability services, no information was provided on how
participant met criteria for intellectual disability. A high number of participants
passed the emotional recognition task, suggesting a ceiling effect that may have
obscured associations with other variables.
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Joyce et al. (2006) attempted to replicate the study by Dagnan et al. (2000) with a
broader range of Intellectual Disability. Although their results broadly support the
previous paper, in the current study, a correlation was detected between emotional
identification and the Reed and Clements task and the “if A and B, choose C”
cognitive mediation task. This may have been due to the potential ceiling effect
operating in Dagnan et al. (2000); whereas in Joyce et al. (2006) nine people were
unable to identify emotions, and 17 could not label emotions. Receptive
Vocabulary was associated with the total score on the cognitive mediation task,
unlike the results of Dagnan et al. (2000). Furthermore, only a very small number
of participants could pass the incongruent subtests in this sample (2 for “If A and
B, choose C” and 3 for “If A and C, choose B”). These results broadly support the
conclusions of Dagnan et al. (2000).
Oathamshaw and Haddock (2006) extended this research to a sample with
psychiatric comorbidity (psychosis) and included a questionnaire on
distinguishing thoughts, feelings and emotions. Receptive Vocabulary correlated
with emotional recognition, Reed and cognitive mediation. The Reed and
Clements task was passed by significantly more participants that could identify
thoughts, or feelings. Significantly more participants could identify a thought,
feeling and behaviour than could pass the incongruent cognitive mediation
subscale. This paper also found significant differences between the total congruent
and incongruent subscales (not reported in Dagnan et al. 2000). This may be
because Oathamshaw and Haddock (2006) used a power analysis to determine
their sample size which was larger than the previous studies, and may have had
more power to detect the effect. Oathamshaw and Haddock (2006) also used one-
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tailed tests in all their analysis, which increases sensitivity, but also increase the
probability of a Type I error and is less stringent that two-tailed tests.
Confounding factors from the sample in this paper were controlled by more
explicit inclusion and exclusion criteria. Participants were included if they had
received an official intellectual disability diagnosis through formal assessment,
and individuals with aetiological diagnosis such as ASD were explicitly excluded.
Sams et al. (2006) explored IQ, receptive vocabulary and the association with
emotional regular and thoughts, feelings and behaviour discrimination. The full
score on the IQ test, the verbal score and the receptive vocabulary could explain
40% variation in performance in the thought, feeling and behaviour task. Full IQ
and verbal sub-scale score correlated with identifying feelings, and these scores
and receptive vocabulary correlated with identifying behaviours. However, there
were no significant associations between language ability and the ability to
distinguish thoughts. Participants were randomly allocated to a “cue” and “no
cue” conditions for the thought/feeling/behaviour task, but there was no
significant different between performance in the two conditions. However, due to
several skewed scores in the data, including positive skew in IQ scaled scores, the
authors chose to use raw scores and account for age in the analyses. This is likely
to impact on the reliability and validity of the measure of IQ in analysis. The
emotional recognition task showed negative skew, with the modal response as five
out of five, so the responses were analysed dichotomously as “five” and “less than
five”. This suggests that there was a ceiling effect in this particular task. However,
this paper controlled both for psychiatric diagnosis and previous experience with
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CBT (although not aetiological diagnosis), restricting potential confounding
factors.
Summary
Verbal comprehension consistently emerged as a significant covariate of
therapeutic task performance. There were correlations between performance on
different cognitive therapy tasks – i.e. participants who passed the Reeds and
Clements task were more likely to pass the cognitive mediation task (Dagnan et
al. 2000), but significantly more participants passed less complex tasks such as
emotional recognition than passed more complex cognitive therapy tasks, with
only a small number of participants passing incongruent cognitive mediation
tasks. Dagnan et al. (2000) have argued that this task has the most validity in
measuring understanding of cognitive mediation, as the congruent subtests could
be solved by applying a situation – response understanding (i.e. an A to C link) or
a learnt rule. This suggests that the majority of participants with intellectual
disability have difficulty understanding the certain concepts of cognitive therapy,
but can understand more basic concepts such as the relationship between
situations and emotions. This effect appeared unaffected by co-morbid psychiatric
diagnosis Oathamshaw and Haddock (2006) or a slightly lower mean IQ (Joyce et
al., 2006).
Although the results have been replicated, three papers used a similar
methodology, and similar measures (Dagnan et al., 2000; Joyce et al., 2006;
Oathamshaw and Haddock, 2006). This may mean the results are similar due to a
consistent confounding factor rather than a genuine association. For example,
157
verbal comprehension (as measured by the BPVS) was consistently correlated
with emotional recognition. However, as both tasks are similar in design
(selecting a picture stimulus on the basis of a spoken word) and the BPVS has
items related to emotions, this result may be due to task modality rather than a
genuine association. Similarly, the cognitive mediation task designed Dagnan et
al. (2000) and the Reed and Clements task both rely on verbally presenting the
stimulus. The similarity in modality of tsk presentation may have inflated the
association with verbal capabilities. Similarly to the self-report anger inventories
used before, the cognitive mediation task and Reed and Clements task also use
theoretical scenarios, which may require perspective-taking abilities. However,
perspective-taking and metallization skills have not been investigated.
Furthermore, only a limited number of cognitive variables or client characteristics
were investigated. For example, many tasks including the cognitive mediation
task used theoretical situations and required perspective-taking skills, but these
papers did not investigate theory of mind or perspective taking ability. Although
one paper extended the research to a psychiatric population, the impact of
aetiological diagnosis on the ability to complete cognitive therapy tasks or the
association was not investigated in these papers. Three out of four papers did not
appear to control for aetiological diagnosis and two out of four failed to control
for psychiatric diagnosis or current treatment which may suggest potential
confounding factors. In addition, the reliance on similar measures is a weakness in
this research area.
158
Although these results demonstrate the potential for clients with intellectual
disability to understand the core concepts of therapeutic skills, these results should
be interpreted with caution. In particular, although the therapeutic tasks used in
these papers have face validity, the correlation between performance in these tasks
and outcome following a CBT intervention has not been investigated. However,
these results are consistent in demonstrating the association between verbal
comprehension and cognitive therapeutic task performance, and in demonstrating
that simple CBT tasks such as understanding situation and emotion links can be
passed by a proportion of individuals with intellectual disability.
Discussion
Main Findings
Verbal ability emerged as a significant factor consistently in therapeutic task
performance and inconsistently in therapeutic efficacy studies. Diagnosis was
identified as a possible relevant factor when investigated in therapeutic efficacy
studies, but was not compared to therapeutic task performance. Age contributed in
some anger and aggression studies Non-verbal reasoning emerged as a significant
factor when the study sample including participants with moderate and severe
intellectual disability and non-verbal methods of communication. Although not
the main focus of this review, the efficacy studies were consistent with previous
literature views in demonstrating the efficacy of therapeutic interventions (Prout
and Nowak-Drabik, 2003; Vereenooghe and Langdon, 2013) but did not
consistently identify which client characteristics contributed to this effect.
159
Clinical Significance
Investigations into therapeutic skills demonstrate that only a small number of
individuals with intellectual disability have the ability to understand the core
concepts of cognitive therapy such as cognitive mediation (Dagnan et al., 2000;
Joyce et al., 2006) which practitioners perceive as necessary for cognitive
behavioural therapy (Haddock and Jones, 2006). However, there is emerging
evidence that individuals with intellectual disability can be trained to improve
performance in therapeutic tasks (Bruce et al., 2010) but to date this research has
not explored what client characteristics are required to benefit from this training.
As previously theorised by Hatton (2002) verbal comprehension was an important
covariate of therapeutic task performance, suggesting individuals with greater
verbal comprehensive skills are more likely to benefit from a cognitively based
therapy. Furthermore, the pattern of results was similar when participants with
psychosis were included (Oathamshaw and Haddock, 2006) challenging psychosis
as an exclusion criteria, reported by Haddock and Jones (2006)
However, there are inconsistences in the results. Most strikingly, although
verbal comprehension was constantly associated with therapeutic task
performance, the association between therapeutic efficacy and verbal IQ or verbal
comprehension was not consistently significant. Possible reasons for this include a
potential confound of behavioural aspects of interventions and skills training.
Previously, Taylor and Lindsay (2008) have concluded that verbal ability alone is
insufficient to predict treatment outcome or guide choice of intervention. Possible
reasons for this include the potential confound of behavioural skills training
160
(Sturmey, 2004). As study protocols for the intervention studies show an
emphasis on skills training, relaxation, and other behavioural techniques, which
may be sufficient to produce significant improvements without engaging in the
cognitive aspects of therapy (SOTSEC-ID, 2010; Willner et al., 2013). Only one
study identified non-verbal reasoning as a significant factor, which the authors
suggest may be due to greater reliance of pictorial and active communication
methods within the group due to the inclusion of non-verbal clients (Hagiliassis et
al., 2005). Although this paper demonstrates that clients with moderate to severe
intellectual disabilities benefited from intervention, it is not clear whether they
benefited from the cognitive aspects or the behavioural aspects of the intervention.
Another possible reason for this inconsistency may be the intensity or
length of interventions. For example, Taylor et al. (2005) found that individuals
with lower IQs showed more change, but this study offered a more intensive
program of individual sessions twice weekly, whilst other protocols offered once
weekly sessions. Whilst the group CBT for anger and aggression interventions
lasted between nine to sixteen sessions and found an association with verbal or
full scale IQ, the CBT intervention for sexual offending behaviour lasted for a
year and the DBT intervention for several years. Similarly, Taylor et al. (2009)
found the “below” median IQ group mean Novaco Anger cognitive subscale
improved between the post-intervention and follow-up assessments, meaning the
difference between the groups was no longer significant. It is possible that
participants with lower receptive language ability require more time to assimilate
the material presented, and overcome any initial effect of IQ or receptive
vocabulary.
161
Evaluation of literature
A limitation of the literature as a whole is the lack of research on this question.
Although the Royal College of Psychiatrists argued that a greater understanding
of the factors relating to efficacy of therapy in intellectual disabilities would
enable practitioners to target interventions, 19 papers were excluded from the
literature review for investigating treatment efficacy without investigation the
contribution of client characteristics.
Of the papers included in the literature search, all but one of the peer-reviewed
papers identified through a systematic search examined either a CBT intervention
or a CBT therapeutic task or skill. This reflects a general bias in research into
psychological interventions for individuals with intellectual disabilities towards
CBT. However, the therapeutic task investigations suggest that only a small
proportion of individuals with intellectual disabilities may understand the core
concepts of CBT. Future research should explore whether other models of
therapeutic intervention have a wider application to this client group. For
example, Brown et al. (2013) used a DBT approach with a client group with full
scale IQs as low as 40 (moderately impaired).
The investigation into client characteristics have also been limited. Verbal
comprehension and IQ have frequently been investigated. However, many other
personal factors have been theoretically linked to success in therapy including
motivational stage, memory, ability to monitor one’s own emotions, and related
activities (Hatton, 2002; Willner, 2006). These factors may be potentially
confounding the results.
162
Many of the papers reviewed above show similar limitations, including failure to
report a measure of IQ, or the method by which diagnosis of intellectual disability
was confirmed. Furthermore, several papers include participants who do not meet
the diagnostic criteria for intellectual disability (i.e. SOTSEC-ID, 2010; Brown et
al. 2013). This means it is difficult to determine which population these findings
apply to – as well as creating a potential confounding factor. In addition, only a
few papers controlled for aetiological diagnosis, and only three papers explored
diagnosis was a contributory factor – either psychiatric diagnosis (Brown et al.,
2013) or aetiological (SOTSEC-ID, 2010; Heaton & Murphy, 2013). However,
Matson and Shoemaker (2009) have argued that individuals with ASD have
specific barriers to engaging in therapy which may be important to consider.
Final conclusions and future research
The literature is currently a long way from identifying criteria to guide choice of
intervention and improve treatment efficacy (Royal College of Psychiatrists,
2004). From the limitations of the current literature, it is clear that future research
needs to expand both into exploring other therapeutic models, and other client
characteristics, in order to broaden and clarify our understanding of how the
personal characteristics of individuals with intellectual disability are associated
with treatment efficacy and therapeutic skills.
163
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List of Appendices
Appendix A – Guidelines for Manuscript Submission for the Journal of
Intellectual Disabilities
Appendix B – Demographic information of studies investigating treatment
effectiveness 6
Appendix C - Outcomes of studies investigating treatment effectiveness
Appendix D - Demographic information of studies investigating therapeutic .......
skills
Appendix E - Outcomes of studies investigating treatment effectiveness
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Appendix A – Guidelines for Manuscript Submission for
the Journal of Intellectual Disabilities
The aim of the journal is to publish original research or original contributions to
the existing literature on intellectual disabilities.
1. Peer review policy
Each paper submitted, if considered suitable by the Editor, will be refereed by at
least two anonymous referees, and the Editor may recommend revision and re-
submission.
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2. Article types
Your manuscript should ideally be between 6000 and 8000 words long, and
double spaced. Please also supply an abstract of 100-150 words, and up to five
keywords, arranged in alphabetical order.
Books for review should be sent to: Dr Roja D.Sooben, Senior Lecturer Learning
Disability Nursing Research Lead, Room 1F300, University of Hertfordshire,
College Lane, Hatfield, Herts AL10 9AB.
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171
3. How to submit your manuscript
Before submitting your manuscript, please ensure you carefully read and adhere to
all the guidelines and instructions to authors provided below. Manuscripts not
conforming to these guidelines may be returned.
Journal of Intellectual Disabilities is hosted on SAGE Track, a web based
online submission and peer review system powered by ScholarOne Manuscripts.
Please read the Manuscript Submission guidelines below, and then simply visit
http://mc.manuscriptcentral.com/jnlid to login and submit your article online.
IMPORTANT: Please check whether you already have an account in the system
before trying to create a new one. If you have reviewed or authored for the journal
in the past year it is likely that you will have had an account created. For further
guidance on submitting your manuscript online please visit ScholarOne Online
Help.
All papers must be submitted via the online system. If you would like to discuss
your paper prior to submission, please refer to the contact details below.
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4. Journal contributor’s publishing agreement
172
Before publication SAGE requires the author as the rights holder to sign a Journal
Contributor’s Publishing Agreement. For more information please visit our
Frequently Asked Questions on the SAGE Journal Author Gateway.
Journal of Intellectual Disabilities and SAGE take issues of copyright
infringement, plagiarism or other breaches of best practice in publication very
seriously. We seek to protect the rights of our authors and we always investigate
claims of plagiarism or misuse of articles published in the journal. Equally, we
seek to protect the reputation of the journal against malpractice. Submitted articles
may be checked using duplication-checking software. Where an article is found to
have plagiarised other work or included third-party copyright material without
permission or with insufficient acknowledgement, or where authorship of the
article is contested, we reserve the right to take action including, but not limited
to: publishing an erratum or corrigendum (correction); retracting the article
(removing it from the journal); taking up the matter with the head of department
or dean of the author’s institution and/or relevant academic bodies or societies;
banning the author from publication in the journal or all SAGE journals, or
appropriate legal action.
4.1 SAGE Choice and Open Access
If you or your funder wish your article to be freely available online to non
subscribers immediately upon publication (gold open access), you can opt for it to
be included in SAGE Choice, subject to payment of a publication fee. The
manuscript submission and peer review procedure is unchanged. On acceptance of
your article, you will be asked to let SAGE know directly if you are choosing
173
SAGE Choice. To check journal eligibility and the publication fee, please visit
SAGE Choice. For more information on open access options and compliance at
SAGE, including self author archiving deposits (green open access) visit SAGE
Publishing Policies on our Journal Author Gateway.
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5. Declaration of conflicting interests
Within your Journal Contributor’s Publishing Agreement you will be required to
make a certification with respect to a declaration of conflicting interests. Journal
of Intellectual Disabilities does not require a declaration of conflicting interests
but recommends you review the good practice guidelines on the SAGE Journal
Author Gateway.
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6. Other conventions
'Intellectual disability' and 'intellectual disabilities' should be written out in full in
all instances and never abbreviated to 'ID'. Please provide a list, in alphabetical
order, of abbreviations used, and spell them out (with the abbreviations in
brackets) the first time they are mentioned in the text. As far as possible, please
avoid the use of initials, except for terms in common use.
174
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7. Acknowledgements
Any acknowledgements should appear first at the end of your article prior to your
Declaration of Conflicting Interests (if applicable), any notes and your
References.
All contributors who do not meet the criteria for authorship should be listed in an
`Acknowledgements’ section. Examples of those who might be acknowledged
include a person who provided purely technical help, writing assistance, or a
department chair who provided only general support. Authors should disclose
whether they had any writing assistance and identify the entity that paid for this
assistance.
7.1 Funding Acknowledgement
To comply with the guidance for Research Funders, Authors and Publishers
issued by the Research Information Network (RIN), Journal of Intellectual
Disabilities additionally requires all Authors to acknowledge their funding in a
consistent fashion under a separate heading. Please visit Funding
Acknowledgement on the SAGE Journal Author Gateway for funding
acknowledgement guidelines.
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175
8. Permissions
Authors are responsible for obtaining permission from copyright holders for
reproducing any illustrations, tables, figures or lengthy quotations previously
published elsewhere. For further information including guidance on fair dealing
for criticism and review, please visit our Frequently Asked Questions on the
SAGE Journal Author Gateway..
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9. Manuscript style
9.1 File types
Only electronic files conforming to the journal's guidelines will be accepted.
Preferred formats for the text and tables of your manuscript are Word DOC, RTF,
XLS. LaTeX files are also accepted. Please also refer to additional guideline on
submitting artwork [and supplemental files] below.
9.2 Journal Style
Journal of Intellectual Disabilities conforms to the SAGE house style. Click here
to review guidelines on SAGE UK House Style
9.3 Reference Style
Journal of Intellectual Disabilities adheres to the SAGE Harvard reference style.
Click here to review the guidelines on SAGE Harvard to ensure your manuscript
conforms to this reference style.
176
If you use EndNote to manage references, download the SAGE Harvard output
style by following this link and save to the appropriate folder (normally for
Windows C:\Program Files\EndNote\Styles and for Mac OS X
Harddrive:Applications:EndNote:Styles). Once you’ve done this, open EndNote
and choose “Select Another Style...” from the dropdown menu in the menu bar;
locate and choose this new style from the following screen.
9.4. Manuscript Preparation
The text should be double-spaced throughout and with a minimum of 3cm for left
and right hand margins and 5cm at head and foot. Text should be standard 10 or
12 point.
9.4.1 Your Title, Keywords and Abstracts: Helping readers find your article
online
The title, keywords and abstract are key to ensuring readers find your article
online through online search engines such as Google. Please refer to the
information and guidance on how best to title your article, write your abstract and
select your keywords by visiting SAGE's Journal Author Gateway Guidelines on
How to Help Readers Find Your Article Online.
9.4.2 Corresponding Author Contact details
Provide full contact details for the corresponding author including email, mailing
address and telephone numbers. Academic affiliations are required for all co-
authors. These details should be presented separately to the main text of the article
to facilitate anonymous peer review.
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9.4.3 Guidelines for submitting artwork, figures and other graphics
For guidance on the preparation of illustrations, pictures and graphs in electronic
format, please visit SAGE's Manuscript Submission Guidelines.
Figures supplied in colour will appear in colour online regardless of whether or
not these illustrations are reproduced in colour in the printed version. For
specifically requested colour reproduction in print, you will receive information
regarding the costs from SAGE after receipt of your accepted article.
9.4.4 Guidelines for submitting supplemental files
Journal of Intellectual Disabilities does not currently accept supplemental files.
9.4.5 English Language Editing services
Non-English speaking authors who would like to refine their use of language in
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178
Appendix B – Demographic information of studies
investigating treatment effectiveness
Table 1: Demographic information of studies investigating treatment effectiveness
Paper
Sample Diagnosis of I.D. /
Aetiological
Diagnosis
Co-Morbid Diagnosis
Setting Inclusion/Exclusion
Will
ner e
t al.
(200
2)
N = 7 (intervention only)
3 female, 4 male.
Age Range 18 – 57
WASI, WAIS-R or WAIS-III:
Full Scale IQ mean: 63.9 ( s.d. 14.2), Verbal 64.6 (s.d. 10.7), Performance 68.6 (s.d. 11.8)
Not reported
Not specified Bro Morgannwg Community Clinical Psychology Service
Inclusion: clients of Community Support Teams that may benefit from anger managementExclusion: care manager assessment (n = 2), unable to complete assessment (n = 1)
179
Ros
e, L
oftu
s, F
lint a
nd C
arey
(200
5)
N = 50 (intervention only)
40 male, 10 female
Mean Age 34.7 (s.d.10.11, range 17-49)
Receptive Vocabulary (BPVS) Raw Score
Mean: 72 (s.d. 20.9, range 24 – 113)
Registered I.D. Service Users
Not specified Birmingham: Community Clinical Psychology Service: One mixed rural/urban, one inner city, one urban borough
Inclusion: Experiencing problems with aggression (physical assault, or severe/repeated damage to property or verbal aggression), receptive language was sufficient to understand directions, and they could sit with a group leader on an individual session for at least 20 minutes. Not explicit exclusion criteria.
Had
ilias
sis,
Gul
benk
ogul
u, a
nd D
i Mar
co (2
014)
N = 14 (7 male, 7 female)
Mean age: 44.93 (s.d. 13.04)
Peabody Picture Vocabulary Test Mean: 60 (s.d. 14.35)
Coloured Progressive Matrices Age-Equivalent Mean Score: 6.89 (s.d. 1,8)
5 borderline intellectual disability,
1 mild,
4 moderate
4 severe
(based on receptive vocabulary)
No information on aetiological diagnoses.
No psychiatric conditions
Scope (intellectual disability service in Victoria, Australia)
Interview with psychologist to confirm participant presenting with significant anger problems and able to engage in a group intervention (4 unsuitable)
180
Tayl
or, N
ovac
o, G
illm
er, R
ober
tson
and
Tho
rne
(200
5)
N = 16 (All male)
Age
Mean = 29.4 (s.d.7.6)
IQ (WAIS)
Mean Full-Scale IQ: 67.1 (s.d. 4.5)
IQ between 55 - 80
69% of total sample noted as having affective, psychotic, or personality disorder diagnosis, (distributed evenly across treatment and control group).
NHS inpatient Forensic Unit, Northgate and Prudhoe NHS Trust,
4 in medium security,
3 in acute low security,
9 in rehabilitation
Inclusion: Males, between 18 and 60 years of age, FSIQ between 55 and 80, detained under the Mental Health Act, above threshold on anger inventory scales. Exclusion: Presence of an uncontrolled axis I disorder, presence of epilepsy related to aggression, plans for discharge in 6 months from study start date.
Tayl
or, N
ovac
o an
d Jo
hnst
on, 2
009
N = 83, 67 male, 16 female.
Mean Age: 32.4 (s.d. 10.9, range 19 - 62)
WAIS-III
Verbal IQ Mean: 68.4 (s.d. 5.7, range 54-81)
Not reported
Not reported In-patient learning disability Forensic Unit,
Northgate and Prudhoe NHS Trust,
Inclusion: refered by clinical teams for anger and aggression following assessment and formulation
181
Will
ner e
t al,
2013
N = 91, 65 male, 26 female
Mean Age: 37.0 (range 27.5 – 48.5)
WASI
Full Scale IQ mean: 59 (53 – 64)
BPVS Raw Score
Mean: 107.3 (s.d.31.38)
Not reported
34% scoring above cut off for depression on GDS, 73% scoring above cut off value for clinical anxiety on the GAS.
15 day services randomised to intervention setting, across England, Scotland and Wales
Inclusion: within ID services with mild to moderate ID, identified as having difficulty with anger, able to provide consent and complete assessment. Exclusion criteria: within the service for reasons other than diagnosed ID, currently receiving psychological treatment, requiring urgent referral, dependent on the clinical judgement of a clinical psychologist.
Bro
wn,
Bro
wn
and
Dib
iasi
o (2
013)
N = 40, 35 male, 5 female
Age Range: 19 – 63
IQ (Not Specified)
Full-Scale Mean: 60.8 (s.d. 10.1)
Range: 40 - 95
82.5% had IQ lower than 70
18% had diagnosis of ASD
95% at least one Axis I Disorder: 38% Sexual Disorders, 35% anxiety disorders, 25% Mood disorder, 20% Borderline personality disorder, 15% Impulse control, 18% Intermittent Explosive Disorder, 13% conduct disorder, 13% ADHD, 10% Substance misuse, 8% psychotic, 5% Oppositional Defiant Disorder
Rhode Island
Justice Resource Institute-Integrated Clinical Services
Not specified
182
S.O
.T.S
.E.C
. – I.
D. (
2010
)
N = 46, All male
Mean age: 35.3 (s.d. 12).
IQ (WAIS-III)
Full Scale Mean: 68 (s.d. 7.6, range 52 – 83). Verbal 68 (s.d. 7.6, range 53 - 85), Performance 73 (s.d. 8.2, range 58 – 99)
91% Formally diagnosed with ID, 84% diagnosed in childhood. 21% ASD (9 formally diagnosed), 1 Downs Syndrome, 1 Fragile X, one Klinfelter's Syndrome).
31% personality disorder, 16.7% mood disorder, 12% anxiety disorder, 9.5% schizophrenia or psychosis.
UK:
67.4% community living, 4.3% low secure venue, 28.3% medium secure.
Inclusion: within ID services, displaying sexually abusive behaviour (with or without conviction), aged 18 – 60, deemed suitable for CBT.
Exclusion: Data from men who repeated groups
Hea
ton
and
Mur
phy
(201
3)
N = 34, All male
Mean age: 44 (s.d. 12, range 22 - 68)
IQ (WAIS-III)
Full Scale Mean: 65 (s.d. 7, range 52 – 83), Verbal: 66 (s.d. 8), Performance 68 (s.d. 8).
91% formally diagnosed with I.D.
21% Autism diagnosis; 12% mood disorder, 12% diagnosis of schizophrenia, 9% personality disorder, 6% anxiety disorder
UK:
15% in secure services, 85% in community
Includion: as above (except data from men repeating groups was included (n=5).
Additional exclusioncriteria: significant incomplete data from SOCSEC-ID (2010), less than 9 months from completing treatment, current severe mental health difficulties.
183
Appendix C - Outcomes of studies investigating treatment
effectiveness
Table 2: Outcomes of studies investigating treatment effectiveness
Paper
Patient Characteristi
cs
How Measure
d
Outcome How Measured
Result
Will
ner e
t al,
2002
IQ (full scale, verbal, performance)
WASI (WAIS-III, WAIS-R)
Anger Two self-report anger inventories, one staff report anger inventory
FSIQ correlated significantly with improvement (r = 0.81, p <.05). VIQ also correlated significantly with improvement (r = 0.95, p <.01). PIQ did not.
Linear regression suggested an intercept of 50 for VIQ, and an improvement of approximately 1.7% on initial anger scores for each IQ point.
184
Ros
e, L
oftu
s, F
lint a
nd C
arey
(200
5)
Receptive Vocabulary
Age
Gender
Presence of accompanying staff member
Experience of Therapist
BPVS Anger Single self-report Anger Inventory
Pre- to post- intervention measures:
Overall regression explained 17.5% of the variance but this was non-significant. Two significant predictors were identified BPVS (ß =-0.36, p =.033), and being accompanied by a staff member (ß = 0.44, p =.014).
Pre-intervention to follow-up:
Overall regression explained 14.4% of the variance but this was non-significant. No significant predictors identified.
185
Had
ilias
sis,
Gul
benk
ogul
u, a
nd D
i Mar
co (2
014)
Receptive Vocabulary
Non-verbal reasoning ability
Age
Gender
Primary Mode of Communication
Peabody Picture Vocabulary Test
Coloured Progressive Matrices
Anger Novaco Anger Scale
(Self report)
Novaco Anger Scale ratings between Pre- and post- intervention correlated significantly with non-verbal reasoning (r = -56, p < .05) but not receptive vocabulary (r = -.21).
The only variable to account for significant variance in the linear regression was Non-verbal reasoning ability (R2 = .309, β = -.556, p = .036)
Tayl
or, N
ovac
o, G
illm
er,
IQ WAIS Anger Staff and Self-rated anger scales
Between pre- treatment to follow-up provocation inventory scores, those below the median split for IQ showed greater improvement than those above (t (14) = 2.30, p = .038)
186
Tayl
or, N
ovac
o an
d Jo
hnst
on (2
009)
Verbal IQ WAIS III Anger Novaco Anger Scale (self-report)
Trait Anger Scale (self-report)
Provocation Inventory
Ward Anger Rating Scale (observed behaviour by ward staff)
Linear trend analysis: No significant associated except pre- to post- Novaco Anger cognitive subscale (r = 0.315; p < .005)
Participants into “above” and “below” median IQ. No significant difference except pre- to post Novaco Anger cognitive sub-Scale (mean change 3.44 (s.d. 4.97) for the higher IQ compared to 0.43 (s.d. 7.80) t(81) = 2.90, p = .04
Will
ner e
t al,
2013
IQ
Receptive Vocabulary
Age
Gender
WASI
BPVS
Provocation
Coping skills
Provocation inventory (self-report, key worker)
PACS
None of the personal characteristics correlated significantly with outcome measures. However, IQ was a significant predictor in a regression model for key worker provocation inventory scores (ß = -0.334, p <.04).
Bro
wn,
Bro
wn
and
Dib
iasi
o (2
013)
Full-Scale IQ
Age
Co-morbid psychiatric Diagnosis
From Records
Challenging Behaviour
Incident reports
Staff observations
Intensity ratings (based on duration/clustering)
Individual therapy records
Age and five psychiatric diagnosis were significant covariates.
Full Scale IQ was not a significant predictor of treatment response (p = .123)
187
S.O
.T.S
.E.C
. – I.
D. (
2010
)
IQ (Full scale, verbal, performance),
Comprehension of language,
Diagnosis
WAIS-III
BPVS
Re-Offending Behaviour
Sexually Reoffending Behaviour including non-contact behaviours (i.e. public masturbation, verbal sexual harassment)
Diagnosis of ASD was related to higher rate of reoffending behaviour (Fisher's Exact Test, p =.02)
IQ measures and comprehension of language was not significantly associated with outcome
Hea
ton
and
Mur
phy
(201
3)
IQ (Full scale, verbal, performance),
Ability, Comprehension of language,
Diagnosis
WAIS-III
BPVS
Re-Offending Behaviour
Sexually Reoffending Behaviour including non-contact behaviours (i.e. public masturbation, verbal sexual harassment)
Frequency of ASD diagnosis in offender/non offender outcome groups significantly different (chi2 6.7, p <.001)
188
Appendix D - Demographic information of studies
investigating therapeutic skills
Table 3: Demographic information of studies investigating therapeutic skills
Paper
Sample Diagnosis of I.D. /
Aetiological Diagnosis
Co-Morbid Diagnosis
Setting Inclusion/Exclusion
Dag
nan,
Cha
dwic
k an
d P
roud
love
(2
000)
N = 40, 19 male, 21 female
Mean age: 35.1 (s.d. 9.5).
BPVS Raw Score
64 (s.d. 27.1)
Not Specified
Not Specified Lincolnshire
day services.
28 lived at home, 12 in residential settings
Inclusion: Key worker reported they had sufficient language ability to hold a conversation
Joyc
e, G
lobe
and
Moo
dy (2
006)
N = 42, 25 male, 27 female
Mean age: 40 (s.d. 11.6, range 21 - 81)
BPVS Age Equivalent
Mean: 12.87 years (s.d. 6.9, range 5 years nine months to 19 years
Not Specified
Not Specified Inner London borough, five day services
Excluded if below the minimum score on the BPVS (n = 20 before analysis)
189
Oat
hmen
shaw
and
Had
dock
(200
6)
N =50, 27 male, 23 female
Mean age (males): 43.15 (s.d. 11.31) (females): 43.09 (s.d. 2.03)
BPVS raw score
Median score 88, inter-quartile range 63 to 99.75
Formal diagnosis of recognised ID from records (hospital records or formal assessment evidence)
Psychosis (100%): 5 schizophrenia, 11 schizoaffective disorder, 4 evidence of psychotic symptoms. Assessed by PAS-ADD
Manchester: one hospital, three community sites. 74% lived in community
Inclusion: Meet the three criteria for ID, English as first language, BPVS language ability of 4 years 5 months, 18+ years old, psychosis diagnosis
Exclusion: ASD, "rare" syndromes, significant hearing/visual impairments
Sam
s, C
ollin
s an
d R
eyno
lds
(200
6)
N = 59, Gender unspecified.
Age Unspecified (Inclusion criteria: aged between 17 – 60)
WASI
Unspecified. Inclusion Criteria: between 50 = 72
Not specified Mental illness is an exclusion criterion
Kings Lynn: 5 day centres, 1 college
Inclusion: aged 17-60, IQ (WASI) of 50 - 72. All English speaking families/community residential homes and identified as having some receptive language skills.
Exclusion: current diagnosis of mental illness or received CBT in last six months.
190
Appendix E - Outcomes of studies investigating treatment
effectiveness
Table 4: Outcomes of studies investigating treatment effectiveness
Paper Patient Characteristics
Outcome Result
Dag
nan,
Cha
dwic
k an
d P
roud
love
(200
0)
Receptive Vocabulary
(BPVS)
Identifying Emotions
(Makaton Faces)
Link emotional response to activating event (C to A)
(Reed and Clements Assessment Task)
Cognitive Mediation
“If A and B, choose C”
“If A and C, choose B”
congruent and incongruent conditions
Emotional recognition correlated with BPVS: Pearson’s r = 0.43, p< .01).
75% passed Reed and Clements task.
Significant difference between BPVS score of participants who passed/failed (Mann-Whitney U Test: Z = -2.0, p <.05).
10% passed the "If A and B, choose C"
Significant difference between BPVS score of participants who passed/failed (Mann-Whitney U test: Z = -1.4, p < .05)
25% participants passed the "If A and C choose B" task. Significant difference between BPVS score of participants who passed/failed the incongruent subset was significant (Mann-Whitney U test: Z = -2.8, p<.005).
Reed and Clements task significantly associated with all cognitive mediation tasks (sign tests, p <.0001)
Difference between congruent and incongruent conditions was significant for the “If A and B, choose C” task only (sign test: p <.001)
191
Joyc
e, G
lobe
and
Moo
dy (2
006)
Receptive Vocabulary
(BPVS)
Emotional Awareness
(CASP)
Identifying Emotions
(Makaton Faces)
Link emotional response to activating event (C to A)
(Reed and Clements Assessment Task)
Cognitive Mediation
“If A and B, choose C”
“If A and C, choose B”
BPVS correlated with identifying (r = 0.583, p <.01) and labelling emotions r = 0.783, p <.01). CASP and identifying ( r = 0.676, p <.01) and labelling emotions (r = 0.676, p <.01) (Pearson’s two-tailed correlation)
The Reed and Clements task was significantly associated with: identifying emotions (Mann –Whitney U test: Z = -2.94, p <.01) and labelling emotions (Z = -0.29, p <.01), BPVS (Z = -4.21, p <.001) and CASP (Z = -4.49, p <.0001)
“If A and B, choose C” was associated with: BPVS (Z = -2.99, p < .001) and CASP (Z = -2.55, p <.05), and labelling emotions (Z = -2.59, p <.01)
“If A and C, choose B” was associated with CASP only (Z = -2.29, P <.05)
Incongruent subtests were passed by 2 participants (If A and B, choose C) and 3 participant (If A and C, chose B).
192
Oat
hmen
shaw
and
Had
dock
(200
6)
Verbal Ability
(BPVS)
Emotional recognition
(Makaton Faces)
Events to emotions
(Reed and Clements Task)
Cognitive Mediation
If A and B, chose C
If A and C, chose B
Distinguishing between thoughts, feelings and behaviours
(Novel Questionnaire)
All tests were one-tailed.
BPVS correlated with emotion recognition (Spearman's Rho = 0.389, p<.01, one-tailed).
Reed and Clements task was passed by 72%. BPVS score was associated with pass/fail (Mann-Whitney U test: Z = -3.912, p <.01).
Cognitive Mediation
“If A and C, choose B” was associated with BPVS (Mann-Whitney U Test: Z = 1.682, p =.047).
Participants performed better in Reed and Clements task than the cognitive mediation task (Sign Test: p <.001)
Participants performed Reed and Clements task better than Distinguishing thoughts (Sign test: p <.001) and distinguishing feelings (Sign test p < .05)
Less participants passed cognitive mediation tasks than distinguishing behaviours task (Sign test p <.001)
Less participants passed incongruent cognitive mediation than distinguishing thoughts (sign test p <.05)
Participants performed better in distinguishing feelings than cognitive mediation task (sign test p <.05) (excepting “If A and B, choose C” congruent subscale).
193
Sam
s, C
ollin
s an
d R
eyno
lds
(200
6)
IQ
(WASI)
(Due to positive skew in scaled scores, used the raw score and compensated for age in analysis)
Receptive Vocabulary
(BPVS)
Cue Condition
Emotional Recognition
(Makaton Faces)
Due to negative skew, dichotomous “5” and “less than 5” scoring used.
Thought, Feeling, Behaviour discrimination task.
A 4 x 2 MANOVA between IQ (all sub-scales) and BPVS, and Emotional recognition (with age as the covariate). Significant multivariate effect: F (4, 51) = 3.03, P < 0.05.
Univariate analysis suggested higher BPVS was associated with identifying all five faces in emotional recognition task.
Multiple regression (using age, FSIQ, and BPVS) accounted for 40% of the variance in the discrimination task.
Correlations between thought, feelings and behaviours task total was significant between FSIQ (r = .56, P < .01),
VIQ (.59, r = .01)
BPVS (r = .53, P < .001)
But not PIQ (r = .23).
Identifying feelings correlated with FSIQ and VIQ (r = .38 and .40 respectively, P < .05).
Identifying behaviours correlated with Full-scale IQ and BPVS (r = .51 and .50, P < .05) and VIQ (r = .5, P < .05),
No significant difference were found between Cue and No Cue tasks (mean scores 9.87 and 9.62 respectively).
Overview of clinical experience
Year 1 – Adult Mental Health; Community Assessment and Treatment
Service (1 year)
194
I worked within a multi-disciplinary team conducting initial mental health
assessments, risk assessments and psychometric assessments. My work involved
providing psycho-education, developing formulations in collaboration with
clients, and using these formulations to help plan interventions. The work was
conducted primarily within a Cognitive Behavioural Therapy (CBT) framework,
informed by other models such as Cognitive Analytic Therapy (CAT) and
Mindfulness, and I co-facilitated a brief relapse prevention group. In addition, I
conducted neuropsychological assessments using the Wechsler Adult Intelligence
Scale – fourth edition (WAIS-IV), the Wechsler Memory Scale – fourth edition
(WMS-IV), Test of Premorbid Functioning (TOPF), and the Neurological
Assessment Battery (NAB), in conjunction with assessment of motivation. I
worked with a range of conditions from Post-Traumatic Stress Disorder (PTSD),
Obsessive-Compulsive Disorder (OCD), psychosis, anxiety and depression.
Year 2 – Older Adults Mental Health Split Placement; Community
Assessment and Treatment, Older Adult Inpatient Ward and Acute
Dementia Care Ward (six months)
Within the Later Life pathway in the community assessment and treatment
service, I took on a similar role as described above, adapting my methods to meet
the needs of my clients. In addition to anxiety and depression, I worked with
clients in the early stages of dementia or recovering from stroke. Although still
working within a CBT model, I also drew on psychodynamic theory to inform my
formulations and interventions. Within the in-patient services, I worked within a
multi-disciplinary team, providing input at ward rounds, brief interventions and
195
adapting my style of work to suit the demands of the ward environment. Whilst
working in the Acute Dementia ward I also developed skills in indirect assessment
and intervention, and working collaboratively with care staff. During this
placement, I conducted a survey of the baseline activity of clinical staff. During
this placement, I also gained familiarity with additional psychometric measures,
including the Behavioural Assessment of Dysexecutive Syndrome (BADS) and
the Delis-Keplan Executive Functioning test (D-KEFS), and the assessment of
dementia. In addition, I conducted a brief literature search to find appropriate
means of assessing cognitive function in a client over 95, and provided training to
a hospital team on the use of the Montreal Cognitive Assessment (MoCA).
Year 2 – Learning Disability Mental Health; Community Team in a
Social Care service (six months)
I worked within a multi-disciplinary team in a social services setting. My work
involved assessment, neuropsychological assessment and risk assessment,
including assessment of conditions such as Autism Spectrum Disorder (ASD) and
working with clients with challenging behaviour. In addition to CBT, my work
was informed by the systemic model. In direct work with clients, I developed my
skills in adapting my communication methods and simplifying the theoretical
model to meet their needs. In indirect work, I utilised formal behavioural
assessment tools and provided a behaviour plan and consultation to day service
teams, and provided psychoeducation and guidance to parents.
Year 3 – Specialist Placement; Neurobehavioural Clinic (six months)
196
Within a tier 3 Neurobehavioural service, my placement was split between
providing assessments for adults with suspected ASD, and providing both one-to-
one and group CBT for ADHD. I was also involved in service development,
including reaching out to third sector organisations, developing service
information leaflets and information sheets for clients, and provided supervision
to a psychologist intern. I provided training to a IAPT service regarding how to
adapt therapy to meet the needs of clients with ASC. With my supervisor, I helped
re-design the CBT for ADHD group materials, including bringing in Compassion
Focused and Mindfulness models. I also used psychometric assessments to aid in
differential diagnosis.
Year 3 – Child and Adolescent Mental Health; Community Tier 2
service (six months)
I worked within a child community mental health team, including assessment,
intervention and managing risk. I worked with clients with PTSD, depression,
anxiety and school refusal. As part of my work I liaised with schools and third
sector counselling services, and worked both directly with clients and through
parents. In this placement, I continued to develop skills in adapting my
communication methods and assessment methods to meet the developmental and
cognitive abilities of the people I worked with. I also used the Wechsler
Intelligence Scale for Children (WISC) and Wechsler Pre-School and Primary
Scale of Intelligence (WPPSI), and provided supervision to a psychologist
assistant in using psychometric assessments.
Table of Assessments Completed
197
PSYCHD CLINICAL PROGAMME
TABLE OF ASSESSMENTS COMPLETED DURING TRAINING
Year I Assessments
ASSESSMENT TITLE
WAIS-IV Short report of WAIS-IV data and practice
administration
Practice Case Report The Assessment and Transdiagnostic Formulation of an
18-year-old Female with Anorexia Nervosa
Problem Based Learning
– Reflective Account
Problem Based Learning Reflective Account
Major Research Project
Literature Review
A systematic review into the personal characteristics of
individuals with intellectual disabilities associated with
the ability to benefit from psychological intervention
Adult – Case Report 1 A graded exposure approach to accessing the
community with a 38-year-old woman with Complex
Post Traumatic Stress Disorder
Adult – Case Report 2 A neuropsychological assessment of a 63-year-old
woman with self-reported memory impairments
Major Research Project An investigation into the personal characteristics of
198
ASSESSMENT TITLE
Proposal individuals with Intellectual Disabilities associated with
understanding reciprocal roles in cognitive analytic
therapy
Year II Assessments
ASSESSMENT TITLE
Service Related Project A baseline assessment of clinical activity of applied
psychologists in a Community Mental Health Team
Professional Issues
Essay
The Jay report “Independent Inquiry into Child Sexual
Exploitation in Rotherham 1997–2013” promotes greater
cultural competence, engaging with ethnic groups,
challenging political correctness and having up front
discussions with representatives from ‘minority’
communities’. What will be the challenges for you as a
clinical psychologist in taking such an approach?
Problem Based
Learning – Reflective
Account
Problem Based Learning Reflective Account
199
Older People – Case
Report
A psycho-dynamically informed intervention for
depression in a Later Life community setting
Personal and
Professional Learning
Discussion Groups –
Process Account
Process Account
People with Learning
Disabilities – Oral
Presentation of Clinical
Activity
Developing and communicating formulations in a
Learning Disability setting
Year III Assessments
ASSESSMENT TITLE
Major Research Project
Empirical Paper
A thematic analysis investigating the impact of
educational context on how pupils with Autism Spectrum
Conditions make sense of peer relations and themselves
Personal and
Professional Learning –
Final Reflective
Account
On becoming a clinical psychologist: A retrospective,
developmental, reflective account of the experience of
training
Specialist – Case An extended assessment of a man in his late 50s with a
200
Report suspected diagnosis of autism
