REAL services to assist students
who have Asperger syndrome
Nicola Martin
Sheffield Hallam University Autism Centre
1
TABLE OF CONTENTS
Foreword by Professor Alan Hurst
Abstract
Introduction for Students
Introduction for Parents
Introduction for Practitioners
1. Objective of the Study
2. Literature Review
2.1 Characteristics of AS
2.2 The process of diagnosis
2.3 The effects of AS, with consideration to their potential impact in HE
2.4 Prevalence, gender and changes over time
2.5 Mechanisms for Supporting Students with AS in HE
2.6 Pre HE Experience
2.7 Coping with Change
2.8 Curriculum Versus Support
2.9 Support in HE
2.10 Staff Development
2.11 Critical Review Indicating Gaps in the Literature
3. Purpose
4. Results
Tables
5. General Conclusions
6. REAL Services to Assist University Students who have AS-Good Practice
Guidelines for staff
7. Suggestions for further study
References
3
4
5
6
7
9
11
11
13
17
23
25
27
29
32
34
37
38
39
48
49
77
80
96
98
2
Foreword by Professor Alan Hurst
Sometimes those working to support disabled students in higher education have become
frustrated and disillusioned by what might be perceived to be slow progress. However, as we
approach the end of the first decade of the twenty first century, some progress has been
made. The number of students declaring that they have an impairment either on entry or
during their time in higher education has grown year by year, although in some institutions
and within them in some faculties and departments there is still the need to improve
participation rates. At the level of policy and provision, there has been a shift in focus since
the mid 1990’s. From access and increasing numbers which appeared to be the major focus
of the first national survey of disabled students in universities by the National Innovations
Centre in 1974, the major concern has become the quality of the higher education
experience, especially in learning, teaching, and assessment. This can be demonstrated by
considering the projects and initiatives supported by the national higher education funding
councils.
There is also the need to consider differences in participation rates based on the nature of the
impairment. Compared to the past, in more recent times there has been a growth in the
number of students declaring an impairment such as Asperger syndrome. Because of this,
there is a need for advice and help to be made available for staff working to support these
students in post-compulsory education, for the students themselves, and probably too for their
families. This briefing is a creditable attempt to begin to fill the gap in current knowledge. Not
only does it offer hints on how staff and students might work together effectively, it also
provides some important data deriving from research which might
be used as empirical evidence to support policies and provision. This could be helpful in our
efforts to ensure that services for disabled students are seen as an important core activity for
our universities and colleges rather than as an optional source of additional expense.
I feel honoured to be invited to contribute this short foreword to the briefing. The publication of
the briefing is timely in relation to greater familiarity with the legal requirements regarding
discrimination, and also in relation to both the review of policy and provision for disabled
students since 1997 being undertaken by the Higher Education Funding Council for England
and the revision of the Quality Assurance Agency’s Code of Practice Section 3: Students with
Disabilities. I hope that it is well-received throughout the sector both in the UK and beyond
and that it is the start of a series of publications which explore challenges faced when
ensuring the disabled students are included fully in every aspect of post-compulsory
education.
Alan Hurst (Professor)
formerly of the Department of Education and Social Sciences, University of Central
Lancashire, Preston PR1 2HE
April 2008
3
Abstract
Students with Asperger syndrome (AS) are appearing in greater numbers each year in UK
universities. AS is an autistic spectrum condition, which can result in often subtle differences
in aspects of social behaviour, communication and application of mental flexibility. Young men
in their early twenties from A level backgrounds appear most commonly, mostly in science
based courses and students often demonstrate a high level of application and dedication.
In order to maximise opportunities for success, staff delivering a range of services, need to
have some understanding of AS in general and individual requirements in particular. The
findings of this study illustrate that preparation is routinely minimal, and frequently crucial
people are totally unprepared.
179 staff from 17 disparate English universities shared their experience of effective and
ineffective support strategies based on working with109 learners. Eight students and the
mothers of three provided further insight.
Results indicated that students benefited from institutional and parental assistance to deal
with stress and anxiety caused by social and practical aspects of university life. Backup from
agencies beyond the university rarely featured. Application of knowledge across contexts,
problem solving skills, and organisational difficulties were found to impact most on academic
performance.
Students tended to grow in confidence if services were delivered reliably. Empathising with
the learner's perspective, anticipating anxiety triggers and working in a logical fashion yielded
most satisfactory results. Timetabled sessions with a range of people providing assistance
with specific practical or academic tasks was found to be most effective, particularity when
boundaries were made explicit, and over reliance on one staff member was avoided.
Respect for individuality, guarding against stereotyping, and emphasising the positive, are
essential characteristics of effective practitioners.Good Practice Guidelines, designed to be of
practical use to those committed to helping students to succeed, emphasise the requirement
for services to be REAL.
REAL stands for:
Reliable
Empathic
Anticipatory
and Logical
4
Introduction for Students
The aim of this research is to provide staff who work with university students who have
Asperger syndrome (AS) with useful strategies which are likely to be effective in facilitating
student success.
A small number of students who have AS have provided information directly about services
they have found helpful. However, the research is based mainly on insights from practitioners
who have worked with students who have the condition. Therefore, in the main, the views of
students are reported indirectly, i.e. this is partly about how staff perceive students who have
AS to have reacted to aspects of university life. Clearly the focus on the views of practitioners
can be seen as a weakness of the study. However, the strength of the work is that it provides
practical guidance to staff with the aim of improving their ability to empathise with students
who have AS and therefore potentially to provide better services.
Background information is provided for practitioners about how the university environment in
its broadest sense may affect students who have AS. Strategies to minimise negative impacts
and accentuate the positive are explored. Throughout, individuality is emphasises and the
requirement to understand that no two students with AS are the same runs as a theme.
A social model ethos underpins advice about the development of effective services. That is to
say that encouraging practitioners to think about ways to make adjustments to aspects of
the environment to make it more conducive to the learner styles of students with AS is seen
as far more appropriate than expecting learners to attempt to modify there own behaviour
constantly in order to fit in. This thinking contrasts with the medical model approach to
disability which would locate ‘the problem’ with the person with AS who would be expected to
change in order to fit in to the HE environment as it is set up for neurotypical (NT)students.
The author argues strongly for the need for university staff to empathise with students with
AS, as individuals, and to develop sufficiently imaginative and flexible approaches, to
maximise opportunities for success.
Further research which locates the views of the student as the central focus and follows
learners with AS through university is already underway (Madriaga et al 2008). Ensuring the
prominence of the student voice is in keeping with the most recent update of the Disability
Discrimination Act, The Disability Equality Duty (2006) which places a responsibility on
universities to ensure that authentic student views directly inform improvements in practice.
This study may provide Madriaga, and others, with some useful background.
5
Introduction for Parents
The information arising from this briefing is aimed at enabling practitioners in higher education
(HE) to be better equipped to provide effective individualised services to enable students who
have Asperger syndrome (AS) to succeed.
The views of three mothers and eight students have informed the research but university staff
who fulfil a range of roles have provided the bulk of the information. Their insights are based
largely on experiences of working with learners who have AS. Information gathered in the
study has been used to develop good practice guidelines which are applicable to all aspects
of the university context.
The fact that this work is looking at the bigger picture around university life, rather than
focussing solely on academic success should provide some reassurance to parents who may
often find it difficult to trust practitioners to be sensitive to their son or daughter as a whole
person. Parents may find it helpful to read this briefing in order to gain an insight into the sort
of advice practitioners are working with, and the nature of services available in HE for
students with AS.
Responses from students have clearly illustrated the fundamental importance of parental
support in the majority of instances. Ways of working with parents which take into account the
relationship of the university with the student, first and foremost, are considered here.
Difficulties which can arise, for example around working within the context of data protection
and gaining informed consent from the student to talk to the parent, are discussed. The
relationship between the student and the university is central to the context of this study but
the complexities of parenting a person with AS as they progress into, through and beyond HE
are not overlooked.
Students have often exceeded parental expectations and parents have rarely received any
support with moving on with the young person. Sometimes mothers and fathers have
struggled with the notion of trusting university personnel to provide adequate services. The
aim of making this briefing available to parents is to attempt to supply evidence of the
excellent backup universities could offer. This should provide some reassurance as well as
some empowerment.
Further research which explores parent-offspring relationships, in the context of university
students who have AS, is planned. The need to develop this theme has been identified
because the difficulties of getting the balance right between acknowledging the supporting
role of the parents, and the adult status and developing independence of the student, have
come into sharp focus through this study.
6
Introduction for Practitioners
Research which has informed the good practice guidelines which form part of this study has
focussed mainly on the experience of practitioners in working with students with AS.
The term 'practitioner' is used in this study to describe any member of staff who comes into
contact with students with AS at university. The study indicated that staff development,
designed to enable practitioners to provide more effective services for students with AS, often
excludes front line staff. People who work in residential services for example, can be key to
facilitating a successful university experience for someone with AS.
Staff should have the background information presented here made available to them in
order to further their understanding of the possible impact of AS in the HE context.
Stereotypical ideas about AS should be avoided and the requirement to treat people with the
condition as individuals is paramount.
Early reliable support, and an empathic rather than judgemental approach, has been
demonstrated to be key determinants of success. University life is defined as being broader
than academic experience. Providing individualised assistance to enable the student with AS
to achieve social inclusion, and greater independence, is seen here as being within the remit
of university staff.
A social model ethos is advocated, with the onus being on practitioners to develop the
flexibility to make the environment more conducive. Often simple adjustments have proved to
be very effective. Seeing students with AS as an important part of a diverse community is
advocated as an alternative to expecting them to modify their behaviour significantly in order
to fit in. The research cites numerous examples of empathic, imaginative and flexible backup
provided to students with AS by university staff.
The Disability Equality Duty may be useful as a tool to further develop universities as inclusive
organisations, better equipped to enable students who have AS to achieve their often
considerable potential. Developing the confidence and expertise of all staff is critical to the
aim of achieving a culture of inclusive practice.
7
General Introduction
Brief Outline of the Study
Asperger syndrome (AS) is a form of autism associated with more able people, of at least
average intelligence, and, given the opportunity, potentially capable of benefiting from a
university education.
A recent significant increase in the number of disabled students in UK universities is well
documented by annual data from The Higher Education Statistical Agency (HESA). Numbers
of students with AS are increasing, year on year, particularly in science based courses. An
initial attempt is made here to map routes into HE, age, gender, ethnicity, and students
chosen academic areas.
This study aims to enable university practitioners, in a range of roles, to work more effectively
with students who have AS. The extent to which people feel adequately prepared, in order to
be able to offer a good service, is investigated. Findings are translated into guidelines for staff
development, and recommendations for good practice, based on a thorough investigation of
interventions which have helped students with AS.
The focus is on the views of a large number of HE staff, with additional information from eight
students and three of their mothers. Active involvement of stakeholders, including primarily
disabled people, in innovations designed to improve their university experience is congruent
with the ethos of the Disability Equality Duty (2006) . Separate introductions written for
students and parents explain the practitioner focus of this study and suggest ways in which it
could be useful to broader audiences or as a catalyst for further research which involves
students who have AS, more directly.
Enhancing staff competence, and confidence in their own ability to assist students with AS
should be a significant ongoing benefit of this research. The purpose of this briefing (and
consultancy and conference presentations arising from the study), is to make a practical
contribution to the development of more effective services. Readers are encouraged to share
the information widely.
8
Objective of the Study
In summary, the overall objective of the study is to evaluate strategies designed to assist
students who have Asperger syndrome (AS) to succeed in UK universities, and to use the
findings as a basis for staff development opportunities and good practice guidelines.
The term ‘practitioners’ encompasses all staff who provide services to learners with AS.
Aims
In order to achieve this objective the following aims have been identified






To critically investigate the literature.
To ascertain whether the number of students with AS appears to be increasing.
To investigate routes into university, and preferred disciplines.
To consider the sort of staff development practitioners require in order to offer better
services.
To understand the nature of the challenges experienced by students with AS.
To evaluate strategies used to assist students with AS in HE.
To recommend pointers for good practice in supporting university students who have
AS.
Hypothesis and Rationale
The rationale behind the formulation of this set of aims is that it is necessary to gain an
understanding from the perspective of the staff who are working with learners with AS (as well
as the students themselves, their parents, and supporters), in order to develop
recommendations for effective practice.
The study is based on the hypothesis that HE students with AS who do not receive
appropriate services are less likely to succeed.
The following sub hypotheses are considered.





The number of students with AS in HE in the UK is increasing.
Students with AS enter HE from non-traditional routes.
There is a concentration of students with AS in science-based courses.
Support available to learners with AS in HE is not consistently effective.
University staff do not feel adequately prepared to work effectively with learners who
have AS.
Background to the Study – Context
Information has been gathered from seventeen UK universities representing a cross section
of institutions.
Data from professionals forms the bulk of the study and has been gained via questionnaires
distributed at university training events for staff working with students with AS , and by email
sent to Disability Officers via the National Association of Disability Practitioner’s (NADP) e
mail list. Participants were asked to reflected on their own experience and development
requirements, via open ended questions.
9
The views of a small number of students with AS, and a smaller number of mothers, have
also been surveyed over time, via structured interviews and questionnaires.
Responses from participants are thematically analysed broadly and in depth. Threads are
drawn together and compared with the very limited quantity of existing structured investigation
in the area. Findings are used to identify effective and less effective strategies. Ideas about
what good practice could look like are developed and presented in a way which is likely to be
of practical use.
Systematic enquiry about routes into university, numbers of students with AS and chosen
disciplines, is patchy. This study aims to begin to address this identified gap.
While university students with AS are currently attracting some attention, few coherent
attempts have thus far been made to synthesise information about their responses to HE. No
systematic enquiry into the reaction of HE staff to learners with AS is currently available and
this study represents the first attempt to scrutinise the issue from this perspective.
The methodology of the study interrogates the hypothesis and sub hypotheses, summarised
in 1.2. The raison d’être of this piece of work is then to turn the resulting findings into practical
guidance designed to benefit students with AS, primarily by enabling university staff to be
better informed and potentially more effective.
10
2. Literature Review
Although literature which considers the impact of AS in the HE context is fairly limited, there is
a growing body of diverse and pertinent information, and opinion about other aspects of the
experience of people with AS. It is necessary to draw upon these sources for background.
Information, for example, from Further Education (FE), has been considered in terms of
possible application at university level.
The literature review is divided into the following sections2.1 Characteristics of AS
2.2 The process of diagnosis
2.3 The effects of AS, with consideration to their potential impact in HE
2.4 Prevalence, gender and changes over time
2.5 Mechanisms for Supporting Students with AS in HE
2.6 Pre HE Experience
2.7 Coping with Change
2.8 Curriculum Versus Support
2.9 Support in HE
2.10 Staff Development
2.11 Critical Review Indicating Gaps in the Literature
2.1 Characteristics of AS and High Functioning / Able Autism (HFA)
Asperger’s syndrome (AS) and ‘high functioning’ or ‘able autism’ are labels attributed to the
university students in this study to evidence their entitlement for Disabled Student Allowance
(DSA). The necessity to prove entitlement to services funded via DSA by providing diagnostic
information from a clinician is a symptom of a system which is heavily influenced by a
‘medical model’ approach (Barnes 1996, 1999, Oliver 1996, Thomas 2004, Shakespeare
2006), the implications of which will be unfolded as a theme. The various routes travelled to
the acquisition of the label are discussed later.
Confusion surrounds the blurred edges between AS, able and high functioning autism (HFA)
and there is no general agreement about how much this matters. The labels are often used
interchangeably ( Attwood 2000, Bogdashina 2006, Boucher 1998,Howlin 2000, Leekham et
al 2000, Ozonoff et al 2000, Schloper et al 1998, Stanford 2003).
People with AS are characterised by at least average intelligence with no significant language
delay up to the age of five (Attwood 2000, 2007,Wing 1992). Some researchers, and a few
people who carry these labels, argue however that there are subtler differences between the
terms. (Blackburn 2000 Bogdashina 2006, Wolff 1995)
The position adopted by Kugler (1998) ,Rutter and Schloper (1992) and others may be
justifiable for the purpose of this study, which aims to present information in such a way that it
can be useful within a defined practical situation.
‘It has been argued that differentiation is needed when the clinical and educational
implications consequent on it are different.’ Rutter and Schloper (1992 :11)
However, given the strength of feeling articulated by some individuals to whom the various
labels of AS and High Functioning Autism (HFA) are attributed, some further discussion is
11
merited. The label may well be critical in respect of an individual's sense of identity (Banton
and Singh 2004, Fletcher 2006, Kelly 2005, Thomas 2004).
Attwood (2000) Nesbitt (2000) and others argue that individuals diagnosed with AS rather
than HFA generally have more ability to use verbal language. Disagreement with this is
perhaps best articulated by Ros Blackburn (2000) who classifies herself as having autism not
AS and an extremely verbally articulate adult (although significant language delay was a
feature of her development in childhood). Blackburn describes herself as needing people to
perform specific functions for her, for example to take her to places where she can enjoy her
all absorbing hobby of trampolining The requirement is for practical help with engaging with
public transport rather than for companionship.
People with AS, in contrast to Blackburn, usually do want and need friends because they
seek to engage in social contact. Loneliness and depression can result from unsuccessful
attempts to join in with intolerant peers. (Attwood 2000, Baron- Cohen in Morton 2001,
Beardon and Edmonds 2007, Bogdashina 2006, Harpur et al 2004, Henault 2006, Tammett
2006) .Individual with HFA or able autism are arguably, possibly, less likely to experience
depression, arising from loneliness, but may feel frustration as a result of not being able to
indulge in activities of choice unless supported by another person (Blackburn 2000).
The Disabled Student Allowance (DSA) system, which is the primary method for accessing
individualised services, requires a diagnostic assessment . Students not comfortable with
being labelled will therefore not access DSA. Those without a clinical diagnosis will not be
entitled to DSA, and adult diagnosis is hard to come by as many of the participants in
Beardon and Edmonds (2007) study have found. The DSA system is not without its critics
(Beardon and Edmonds 2007, Farrah 2006, Fell and Wray 2006,Goode 2007, Lewis and
Corbett 2001, Waterfield et al 2006, Wilson 2005 and others). The main concerns are that it is
cumbersome and should really be redundant in a truly inclusive environment, and assistance
is not always in place from the start of the course, or in contexts such as placement.
Undoubtedly DSA is a medical model gateway, to whatever social model services may follow.
The consequences of not accessing appropriate assistance can be far reaching. (Adams and
Holland 2006, Beardon and Edmonds 2007,Boelte and Poustka 2000, Fletcher, 2006, Meyer
2001, Shakespeare 2006 Stanford 2003). The consequence of being insensitive to a person's
sense of self can equally have far reaching implications. Identity is a complex and personal
construct and disability identity is not something all people with AS, or HFA will attribute to
themselves. In addition, identity is a dynamic state and people will label themselves in
different ways at different points. Bonnie (2004) describes adolescents with AS doing their
best to ‘fit in’ and rejecting the idea of a disability tag. Banton and Singh (2004) , Tregaskis
(2004) and others reflect on the idea of multiple identities. Goffman (1963) articulates the
notion of ‘the spoiled identity'.
Arguably, when a student is disenfranchised from their entitlement to DSA because of their
own discomfort about the attribution of a label such as AS (or disabled), or when support is
not available because of the lack of a gateway clinical diagnosis, challenges arise which are
complex for the individual and the institution. There is not a body of literature which
interrogates this area because, by definition, students who do not see themselves as
disabled or are not comfortable the AS label, or not prepared to acknowledge this at
university, will not come forward to participate in research about AS, and 'undiagnosed'
people may fall outside of relevant systems.
12
In order to provide appropriate services, whether a learner is described as having HFA or AS,
broad background information is arguably useful, as long as it is applied with sensitivity and a
clear understanding that every student is an individual. The following paragraphs provide a
starting point, with apologies for the medical model terminology.
Central to a diagnosis of AS or HFA is the presence of behaviours which characterise the
‘triad of impairments in autism’. Wing and Gould 1989. (in Cumine et al 1998:2.)
Impairment of social interaction.
Impairment of social communication.
Impairment of social imagination, flexible thinking and imaginative play.
Beardon and Edmonds 2007, Hughes 2007 and others point out that 'impairment' is a loaded
word. The literature is full of deficit model language and it is necessary to seek out accounts
written by people who have AS for a more positive picture of strengths and productive
learning differences. (Edmonds and Worton 2005 /2006 Grandin 1996, Hughes 2007 Lawson
2001 and many others).
In 1981Wing (1996) worked from a translation of Asperger’s original paper ‘Autistic
Psychopathies in Childhood’ and provided the first breakdown of the salient features of AS.
Prior to this work Wing and Gould (1979) had carried out a large-scale prevalence study of all
children under fifteen in Camberwell. They found a significant number who exhibited the
features of the triad but less severely than those who would fit Kanner’s description of ‘early
childhood autism’. (Wing 1996). This finding prompted the use of the terms ‘Autistic
continuum’ and ‘Autistic spectrum’
(Cumine et al 1998:3)
The following behaviours are described by Wing (1996) as central to Asperger’s (1944)
observations:
‘Naïve, inappropriate social approaches to others, intense circumscribed interests in particular
subjects such as railway timetables: Good grammar and vocabulary but monotonous speech
used for monologues not two way conversations: Poor motor co-ordination; levels of ability in
the borderline, average or superior range but often with specific learning difficulties in one or
two subjects, and a marked lack of common sense.’
Wing (1996:20)
Ozonoff et al (2000) suggest that people diagnosed with HFA rather than AS often exhibited
more severe language delay in the early years. This was certainly the case for Ros Blackburn
(Blackburn 2000), now a prominent public speaker about autism who’s development
challenges the assumption that individuals with HFA always maintain the minimal verbal
communication exhibited in childhood.
2.2 The Process of Diagnosis
Students in the study all have a diagnosis of AS rather than HFA., therefore, this will be the
focus for the following review. The process of diagnosis is variable. Beardon and Edmonds
(2007), Bishop (1989). Boucher (1998), Jones (2001), Stanford (2003), and Tantam (2000) for
example cite instances of adults with AS being classified as having mental health difficulties.
Howlin and Moore (1997) point to regional variations in average age of diagnosis. Although
13
statistics are not available, the literature contains numerous examples of individuals being
diagnosed in adulthood (Beardon and Edmonds 2007, NAS 1996, Rice 1998, Tantam 2000,
Walker- Sperry 1998). Students in this study describe varied experiences of, and reactions to
diagnosis. Post diagnostic support is often necessary but rarely offered (Beardon and
Edmonds 2007).
Self-identification in adulthood is also increasing as the profile of AS in the media is rising
(Meyer 2001, Slater-Walker 2003, Stanford 2003). ‘Wired’ for example in 2001 published a
checklist of symptoms of AS in an article entitled ‘Take the AQ (Autism Spectrum Quotent)
test’. (Boron Cohen et al’ 2001).
Diagnostic instruments are becoming more widely available for use by a variety of
professionals. Each translates observable features into behavioural indicators, although there
is some discrepancy in detail. The Autism Diagnostic Interview (ADI), a 'semi-structured
interview for parents and caregivers of autistic persons' (Le- Couteur et al 1986) was one of
the first attempts to make the process more accessible to non-professionals. Caution is urged
about the reliability of information yielded from such methodologies, which cannot be
subjected easily to systematic investigation.
Arguably, more widespread use of such instruments and the raised profile of AS in the
popular media may contribute to the apparent increase in identification. Overview of a range
of diagnostic tools and methods are provided by Cumine et al (1998:13-17) Gould (1998:1921) and Wolff (1995:28) Included amongst these is the American Psychiatric Association
(1994) Diagnostic and Statistical Manual fourth revision (DSM IV) Cumine et al (1998)
Lovecky (2004) and others have critically evaluated a range of assessment tools. Because it
is outside the limits of this study to offer a wider critique of diagnostic methodology, a précis of
DSM- IV is provided to give a flavour diagnostic criteria.
DSM-IV
A Qualitative impairment in social interaction, evidenced by at least two of the following:
1. Marked impairment in non-verbal communication, including eye contact, facial expression,
body postures and gestures to regulate social interaction.
2. Peer relationships not appropriate to developmental level.
3. Lack of spontaneous sharing of enjoyment, interests or achievements with others.
4. Deficit in social or emotional reciprocity.
B Restricted, repetitive, stereotyped behaviour, interests or activities, indicated by at least
one of the following.
1. Abnormally intense or focussed preoccupation with stereotyped pattern(s) of interest.
2. Rigid adherence to non-functional rituals or routines.
3. Stereotypical and repetitive gross or fine body movements.
4. Persistent preoccupation with parts of objects.
C Symptoms described in A and B occurs to an extent which impairs functioning.
D. Early language delay not noted.
E. Lack of other significant developmental delays.
F. Criteria for schizophrenia or other specific pervasive developmental disorders ruled out.
Ambiguous Diagnosis
Because DNA evidence of an exact diagnosis of AS is not available, there is the possibility of
ambiguous application of observational criteria, leading to erroneous ‘diagnosis’.Literature is
scant but includes examples of people with Specific Learning Disabilities apparently
14
manifesting signs of AS. (Newson 1998), and movement between labels, including ADD and
ADHD (Stanford 2003).
Stanford (2003:34) asserts that ‘A diagnosis can be a matter of opinion making it difficult to
quantify’. Practitioners are cautioned to reflective on the power of labelling and not to label
individuals who may just appear ‘eccentric’. The role of HE practitioners in diagnosis is clear.
The vast majority are not qualified to make such a judgement.
Schloper et al (1998; 394-395) express concerns, shared in this study, that
‘the premature use of the AS label… serves as a seriously flawed model… It frequently
appears that advantages (of diagnosis) from a professional perspective were disadvantages
from the parent/ client perspective’.
Boushey (2007) and Hodge (2005) cite parents who described fear for the future when their
children received a diagnosis. Parental expectations can be adversely affected, and this can,
in turn, limit the child's later opportunities (Madriaga 2006). Changes as the child matures
into adulthood may be significant and parental expectations can be exceeded. An individual
who exhibited characteristics of AS to a marked extent at the age of ten for example, may
manifest a far more mature personality in their twenties, while retaining features of the
condition which are no longer as close to the surface. Research is lacking in this area
(Pellicano 2007).
In an inclusive environment, arguably, services should be flexibly available to meet individual
requirements, without the necessity to apply a disability label which may have a negative
impact in itself. (Hall and Stahl 2006).Unfortunately, access to support from the DSA is still
dependant on a medical model approach requiring a label in order to access a service.
Participants in the study described students without a diagnosis who seemed to exhibit
characteristics of AS. Practitioners knew of others who had been diagnosed with AS but
chose not to access support services badged as being for disabled students because they did
not view AS as a disability.
Others may have felt stigmatised. Alvarez and Reid (2003:289) cite examples of individuals,
who have encountered negative reactions from others when a disclosure of autism is made
and advise that the goal of disclosure should be,
‘To effect a change in the relationship with another person or persons to bring about a better
sense of mutual understanding and trust’
Alvarez and Reid 2003:290
Good practice advice arising from this study is mindful of the position described by Alvarez
and Reid (2003) and the rights of the student under the Data Protection Act (1998) and DDA4
(2002)
Although ambiguous diagnosis ,not acknowledging AS at all, or not viewing it as a disability
are of interest, essentially, they have to remain outside the scope of the study. A separate
investigation of the long term development of people diagnosed with AS in childhood would
be useful. Information from students (and their parents perhaps) about their development may
provide evidence for the view that some have exceeded parental expectations. Students who
had a childhood diagnosis of AS and do want or do not require assistance, are also not
represented.
15
The Purpose of Diagnosis
Volkmar (1998) described the function of any diagnostic system:
‘The intent of system like DSM-IV and ICD-10 is to help clinicians and investigators to do a
better job defining autism. They do this by alerting the evaluator to the fundamental features
of the diagnostic concept without (hopefully) making the evaluator blind to the overarching
goals of the diagnostic process. It is the latter process in which the individual is seen in the
totality of her / his environment and needs, that form the basis for programme planning.’
Volkmar (1998:55)
Volkmar’s position fails to acknowledge the potential negative impact of labelling. The role of
diagnosis as a means of accessing resources is critical to this study.
Specific Learning Difficulties
In addition to the criteria emphasised in DSM-IV, other features have been associated with
AS which may well have an impact on the university experience.
Indicators of Specific Learning Difficulty (SpLD), quoted by Wing (1981) from Asperger’s
original 1944 paper (in Wing 1998) have obvious relevance to teaching and learning. As with
dyspraxia for example, organisation and attentional difficulties and motor clumsiness can be
present (Jordan 1998). A recent Department of Education and Science (DfES 2005) working
party focussing on SpLD in HE, discussed at length whether to include AS within an SpLD
framework. The definition included attention deficit and hyperactivity disorder (ADHD) and
dyspraxia. After much debate, the position was adopted that the extent of overlap is unknown
and those with AS can exhibit a range of characteristics beyond the SpLD definition adopted.
Sensory Issues, Executive Function and Central Coherence
Attwood (2007) Beaumont and Newcombe (2007) Bogdashina( 2005) Happe et al (2006)
Ozonoff (1995) Phillips et al (1998) and others have identified deficient executive functioning
which can create problems with planning, organisation and problem solving, and issues with
central coherence, governing the ability to focus on relevant information, rather than getting
bogged down in detail, as characteristics of AS. Organisational challenges are often faced by
other students with SpLD’s so borrowing advice from, for example, study skills sessions
designed for students who have Dyslexia could be of some benefit.
Atfield and Morgan (2007) Bogdashina (2006) Clements( 2005) Grandin and Johnsone (2005)
Lovecky( 2004) Tammett (2006) and others describe differences in attention and the
processing of sensory information leading to distractibility, stress and discomfort. Beardon
and Edmonds (2007) cite numerous examples of students struggling with the sensory
environment.
Selectively attending only to situations perceived as relevant to a particular interest could
impact negatively on learning. Difficulty with assimilating information into a coherent whole
picture, described by Frith (1989) as ‘weak central coherence theory’. can lead to problems
around generalising learning across contexts. Participants in Beardon and Edmond's (2007)
highlighted this area.
16
Health and Wellbeing
Intermittent mental health difficulties, including anxiety and clinical depression (Attwood 2007,
Hare 2004) are also described. Clearly episodes of mental ill health will impact on
performance at university.
Health concerns, such as food intolerances, with their obvious implications when trying to
adapt to a new home and a different diet, are cited by Waring and Ngong (2005) and others.
Ringmn and Jankovic (2000) and Canitano and Vivanti (2007) have observed motor tics
reminiscent of Tourette’s syndrome in individuals with a diagnosis of AS. Puberty onset
epilepsy (Attwood 2000, Jones 2001) has been documented. The presence of behaviours
associated with Obsessive Compulsive Disorder (OCD), anorexia and depression have been
observed by Berjerot (2007). It is possible of course to have more than one impairment. It is
also possible for characteristics of AS to be diagnosed as something else. A student
intensely anxious about money may not be eating because he is reluctant to buy food, or he
cannot stand the sensory environment of the refectory, not because of anorexia. OCD like
behaviours may be indicators of intense interest or manifestations of an anxiety reaction. It is
important to understanding what is behind behaviour rather than intervening on the basis of
an assumption.
2.3 Potential implications of the interaction between features of AS and characteristics
of universities
Isolation
Difficulty with social interaction, social inexperience, and the desire not to repeat previous
negative experiences with peers, including bullying (Breakey 2006, Henault 2006, Mitchell et
al 2007, Hughes 2007, Tammett, 2006) may lead to social isolation. Student with AS may be
very keen to make friends and may well experience rejection, which may lead to depression
and low self-esteem. (Attwood 1993, 1998, 2000, Clements 2005, Edmonds and Worton
2005, 2006 Hare 1997, 2004, Jones 2001, Kugler 1998 Molloy and Vasil 2004 NAS 1996).
Someone who is unhappy about their AS label may experience further inhibition about trying
to make friends.
Evidence is cited by Curtis, in Donnelan (2004) that feelings of isolation are however, not
limited to students with AS. Sophie Allchin (in Donnelan , 2004), a phone help line coordinator from a London university cited many instances of students expressing concerns
about social seclusion, uncertain about how to cope financially and feeling of being the only
one who has not succeeded in making friends.
Low Self Esteem
Depression and low self esteem may arise from social isolation, loneliness, and feeling like
the odd one out. For a student with a diagnosis of AS which they reject, identity issues may
impact on self esteem. Beardon and Edmond’s (2007) provide numerous examples of people
depressed and frustrated by not being able to access a clinical diagnosis.
Media portrayals are unhelpful, with their use of stereotypical terms (Broach 2002, Crewe
2002, Cohen 2007,Haddon 2003), describing people said to have AS as both brilliant and
socially inept (like Einstein), or in some ways tragic. Macnair (2007) on a BBC helpline for
example uses almost exclusively negative language to describe AS (insensitive, unaware,
and obsessive) conceding only that an affected person ‘may be good at learning facts and
17
figures’. In contrast with Macnair, Pollak (2007) on the BRAIN HE website unusually, cites
positive characteristics and uses the term ‘neurodiversity’ which emphasises potentially useful
differences in learning styles, rather than seemingly insurmountable oddities and difficulties.
Some people who have AS and communicate with each other via the internet, like the term
neurodiverse. (Aspergerunited.org, Aspiesforfreedom.com and others).
Narrow Range of Interests
Having a very narrow range of interests may have a negative impact on motivation to spend
time on other aspects of the course outside the specific area of fascination. (Mercier et al
2000.NAS 1996.). Alternatively, the ability to focus, apply oneself and work hard could be
described as very desirable attributes.
A minority (Baron –Cohen and Bolton 1993 suggest around one in twenty) develop restricted
special abilities born of exclusive concentration on a narrow field. (Baron-Cohen in Morton
2001,Grandin and Scariano 1986, Sacks 1995, Pring et al 1997) These can lead to high
levels of achievement.. Mercier et al (2000) and Moyes (2002) caution against viewing
restricted interests as wholly negative.
'Restricted interests provide a sense of well being and positive ways of occupying ones time,
a source of personal validation and an incentive for personal growth'. Mercier et al (2000:406)
Frith 1999, Harpur et al 2004 and others provide examples of historical figures apparently
displaying characteristics reminiscent of AS. These include Einstein, Mozart, Newton and Van
Gough. (Without mentioning ‘the A (autism) word’, Bill Bryson (2003) offers credible
descriptors in vignettes about the personalities of Cavendish, Newton and others). Wikopedia
(a popular source, frequently accessed) also yields a rich crop of names, including those cited
here plus –Gary Numan (singer songwriter), Sotashi Tajiri (games designer) and, richest of
all, Bill Gates (of Microsoft fame).The extent to which evidence from (predominantly male)
mainly historical figures can be deemed to be reliable is limited. Einstein is also described in
other context as having dyslexia, and Mozart, Tourette’s syndrome, which possibly illustrates
the point that retrospective evaluations have limited validity.
Personal accounts by people with AS, including Temple Grandin (Grandin and Johnson
2005), and Daniel Tammett (2006) are more convincing, and argue that characteristics
associated with autism, particularly application, have played a major part in their success.
Time and focus are critical to high levels of achievement, and the development of ‘genius’
(Dobbs 2006). Making a virtue of the ability to ‘single task’ and harnessing the desire to work
exceptionally hard feels like a more positive way of describing 'application' rather than using
the term ‘obsessive behaviour’.
Negative Emotions
Anxiety and depression are well documented (Attwood 2007, Beardon and Edmonds 2007).
Perfectionism can lead to negative feelings about not being good enough. The study yielded
examples of students who had A level papers remarked because they were unable to accept
any grade below A. Beardon and Edmonds (2007) produced numerous stories of people with
AS experiencing massive levels of frustration around trying to cope with day to day life without
adequate services.
A body of knowledge is being amassed by and about people who are able to acknowledge
their AS, (Edmonds and Worton 2005. 2006, Harpur et al 2004. Jackson 2004, Lawson 2006.
18
Shore 2006 Tammett 2006, Webster 2005). In addition, the internet is beginning to provide a
huge quantity of information produced by people with AS. Those who are not able to talk
about their feelings about having a diagnosis of AS are inevitably disenfranchised. A key
ethical consideration of this study is not to induce distress therefore approaches to learners
suspected of having AS by professionals were completely off limits, so advice to staff relating
to this remains hypothetical.
Concerns about Changes in Routine
There is much evidence to suggest that anxiety reactions are often prompted by even
apparently minor changes in routine. (Blackburn 2000, Breakey 2006, Debbault 2002,
Grooden et al 1994, Harpur et al 2004, Lawson 2006, Mesibov et al 1994. Martin 2000,
Tammett 2006, Smith 2003). It is possible, though certainly not inevitable, therefore that a
major life change, like starting university, particularly if this also involves moving house, may
cause traumatic reactions which could manifest dramatically in environments outside the
classroom, such as residential accommodation. (Clements, 2005, Howlin 1997) Staff
responsible for student housing could be called on to deal with the consequences of for
example the reaction of flatmates to behaviour around routines and rituals. The thorny issue
of involvement of peers could then arise. (Martin (2007) Logically residential services staff
and others need to have a level of positive awareness in order to develop appropriate
services.
Theory of Mind
Frith (1989 and 1991), Baron Cohen, in Morton (2001), Howlin et al (2000) and others
describe impairments in the ability to develop a ‘theory of mind’, resulting in an inability to
empathise with others and an insensitivity to their feelings. (Attwood 2001, Tantam 1992,
Howlin et al 2000).The following example cited by Howlin et al (2000) demonstrates a
potential impact of an ‘inability to take into account what other people know’.
‘Jeffrey, an extremely able young man with autism who held a responsible position in a
computing company, was unable to appreciate that if he had witnessed an event, this
knowledge might not be shared by others. He was unable to comprehend his experience was
different from theirs, often referring to events without providing the essential background
information necessary for colleagues to understand the context of his argument’
Howlin et al (2000:9)
Group work requires the ability to collaborate, preferably without irritating other participants.
Geoffrey's challenges with theory of mind may make this hard.
Without a maturely developed ‘theory of mind’ it may not be possible for an individual to be
clear about other people’s intentions. This could increase vulnerability, for example to forms
of bullying or exploitation. (Beardon and Edmonds 2007,Celani 2002. Debbault 2002. Howlin
1997 NAS 1996, Roberts 1995).
Alternatively lack of theory of mind can result in being insensitive to the feelings of other
people. This may result, for example, in the student with AS not being the ideal flatmate –
possibly an area of research interest, although, ethical considerations may well constrain this
avenue of investigation. Goleman (1999) popularised the term ‘emotional intelligence’, and
would describe lack of sensitivity as an example of a deficit in this area.
19
Studies cited can be criticised for not taking a longitudinal perspective on the potential
development of a greater degree of empathy over time and with increased life experiencethis may also be a useful area for further exploration. Thompson (2004) evidenced some
success improvements in apparently empathic reactions within the context of a small scale
action research project focussing on couple counselling. Wood and Tolley (2003) suggest
that it is possible for individuals to boost their own emotional intelligence (EQ), although this
view is not supported by Humphrey et al (2007) and the participants did not have AS. Shore
(2006) reflects on a personal progression towards a more empathic state.
‘The only difference between my having empathy, and a person not on the autistic spectrum,
is that I have to access it cognitively where as most people empathise automatically’
Shore 2006:202
Bogdashina (2006:13) echos the view that ‘autistic individuals have to learn many aspects of
neurotypical people theoretically’. NT people , who notionally do not have difficulty with
theory of mind,, should perhaps think about making use of their highly developed empathy
mechanisms in order to try and see the world from the perspective of people with AS.
Communication
Presenting language skills, although superficially adequate may mask comprehension
deficits. (Hawkins 2004, Lawson 2006) which can be due in part to uncertain theory of mind
(Baron –Cohen and Bolton 1993, Howlin et al 2000). Researchers need to be mindful of this
when considering the ethics of participation by people with AS, and make strenuous efforts to
ensure that understanding by participants makes informed consent is a reality.
A tendency to interpret language literally can lead to social and academic confusion.
(Bogdashina 2006, Frith 1989, Newson 2000) Not fully absorbing the subtleties of social
situations may include uncertainty between action and intention, an insecure sense of danger
and sexual vulnerability (Beardon and Edmonds 2007, Fitzgerald et al 1998, Williams 1992).
Words to describe feelings may not come easily (Baron-Cohen in Morton 2001, Celani 2002,
Peeters 1997, Thompson 2004). Arguably this may extend to difficulty in recognising physical
feelings such as hunger, thirst or tiredness. There is not a body of evidence to support this,
although high threshold of tolerance for physical pain is described (Attwood 2002), perhaps
erroneously. Blackburn (2000) discusses not wanting to acknowledge pain because of the
adverse reaction she experienced from being comforted.
While ‘communication difficulties’ are discussed frequently, a body of systematic
implementation and evaluation of strategies which may enhance communication skills of
adults with AS over time is lacking in the literature. (Thompson 2004). Concentration on
problems without due consideration of potential ways to ameliorate them could be described
as a ‘deficit model approach’. The aim of this study is to move beyond this towards practical
strategies which may be helpful learners with AS. Communication is a two way street so
locating difficulties with one partner in an interaction is unfair.
Self Harm
Self-injurious behaviour has been observed. (Arnold 2004, Curtis 2004, Hare 2004, Jordan
1998) Theories about why this is so include self harm as a manifestation of low self esteem
(Attwood 1998) or an attempt to control the environment by focussing sensory stimuli into a
tangible form, such as controllable pain from gouging the skin, (Blackburn 2001)
20
Research in this area would need to be mindful about the extent to which self harm is
common amongst university students without AS. O’Connor (2005) stated that 1% of the
‘general’ population self harm. Meikle (2004:29) cite self reported evidence (from a sample of
6000) that one in ten, fifteen and sixteen year olds indulge in behaviours such as cutting and
overdosing. The incidents has not been investigated as extensively in the HE population and
caution is required about over generalising results from a survey based on younger
teenagers.
An increase in publicity around self harm, argues Arnold (2004), may in some cases
precipitate the behaviour. This study yielded one report about a student with AS who said
that she had cut herself because she believed that this was a way to get to see the college
counsellor. In this instance the action was apparently the result of a misunderstanding.
Reactions to Sensory Stimulation
Examples are common of an unfriendly sensory environment, for example in a bright and
noisy classroom, precipitating anxiety responses. (Attwood 2000, Bogdashina 2003,
Clements, 2005, Grandin 1996, Irlene 1997,Sicile-Kira 2003, Vermeulen 2001,Williams 1992
.2004.). Sensory overload was cited as a stressor by participants in Beardon and Edmonds
(2007) survey.
The Family Context
An NAS (1996) survey cited numerous examples of stresses experienced by the person with
AS manifesting themselves in behaviour within the family setting. Sleep disturbances,
hyperactivity, and behaviour which embarrassed family members were described. Reactions
played out at home may not necessarily be apparent at university. (Baron- Cohen and Bolton
1993, Ashton Smith 1997, Jordan 1998) Martin 2000, Williams et al 2004). The area of
communication between parents and university is thorny.
Students are advised by Harpur et al (2004) to be proactive in making use of the backup
family members can provide. This advice may signal an empowering ethos by which learners
are enabled to take some control. Adult students may not want contact between university
and family and finding ways to respect this perspective can be challenging.
DSA assessors involved in this study described problems when interviewing students for
DSA, because parents tended to assume that they should be present and answer the
questions.
Changes over Time
There are few exceptions (Rimland 1994) to the view that autism is incurable, although
individuals diagnosed in childhood may go on to exceed expectations (Blackburn 2000, Lipp
2006, Peers 2003, Tammett 2006). The idea of ‘a cure’ is also highly charged. (Barnes 1999,
Beardon 2007, Bogdashina 2006, Oliver 1996, Pollak 2005, Shakespeare 2006) . The
assumption that the difference, culture, neurodiversity, of autism is something to be
eradicated begins to smack of eugenics.
Examples of tangible behavioural change over time are noted in case studies and
autobiographies. Alvarez and Reid (2003) describe self stimulatory behaviours diminishing in
young adults previously exhibiting these obviously autistic characteristics. Blackburn (2000),
Grandin (2003), Tammett (2006) and others have become highly successful while retaining
characteristics associated with autism and AS.
21
Thompson (2004) analyses factors which have improved communication between couples
where one person had AS. Cognitive Behavioural Therapy as a strategy to address
‘psychological problems’ has been used with some success by Hare (2004).
In each example, research samples are small and longitudinal impacts of interventions are
not interrogated fully. In depth evaluation of factors possibly influencing behavioural change
is lacking so it is not possible to conclude whether intrinsic or extrinsic influences are most
relevant.
Where behaviours occur in response to anxiety and confusion, there is evidence to suggest
that positive environmental modification leading to more predictable routines, can precipitate
desirable behavioural change, in response to a feeling of greater security. Maclean-Ward
(2003) Peeters and Gilbert (1999) Slater-Walker (2003) and Smith (2003), cite examples from
employment and education, of apparently greater relaxation as routines became clearer.
Slater-Walker (2003) an individual with AS, cautions however, that worries persist below the
surface. Professionals are reminded not to assume that the person with AS has simply ‘got
over it’, and to be aware that anxieties can resurface.
Boelte and Poustka (2000) suggest that some adults and adolescents can be excluded from
their original childhood diagnosis because of improvements in their presenting characteristics,
particularly as a result of diminishing repetitive behaviour. Systematic investigation into
strategies used by the individual with AS to present themselves in a certain way, or their
motivation to do so, are not available. The amount of effort a student with AS is employing in
an attempt to fit in could be enormous (Harpur et al 2004).
It is possible that a university student diagnosed as having AS in childhood has lost this
diagnosis during adolescents despite retaining certain behaviours congruent with an AS
profile, some of which will remain beneath the surface for much of the time. The minority of
individuals originally diagnosed with AS or HFA who go on to describe their own
achievements still report that they retain autistic characteristics, particularly around anxiety
prompted by change and unfamiliar situations. ( Aston, 2001, Blackburn 00, Deimel 2004,
Fleisher ,2003, Grandin and Scarino 1986, Holliday-Willey 2003, Sicile-Kira 2003,SlaterWalker 2003, Tammett 2006, Vermeulem 2001,Williams 1992 and 2004,. Windibank 2002)
Students possibly trying to get away from what they may perceive as an autistic past, or
erroneous early diagnosis, have not been targeted for this study for ethical reasons. The
perceptions of individuals with this sort of history however would provide greater balance to
discussion.
Disclosure
The extent to which it would be beneficial for peers, including flatmates, of students with AS,
to have some understanding of the condition, merits further discussion. (Alvarez and Reid
2003, Equality Challenge Unit 2004, Martin 2006, Stanford 2003). Issues of confidentiality and
the right of the individual to choose how and to whom they disclose information about their
disability, is relevant here. Leach and Birnie (2006:75) make a suggestion which is difficult to
understand, and begs the question ‘why should s/he?’
‘If the student (with AS) has idiosyncratic behaviour traits, e.g. grimacing, ask for their
permission to explain to the rest of the group’
22
Perhaps a general discussion with the rest of the group about valuing diversity would have
more merit?
Disabled people have a legal right to keep control of personal information which can not be
shared without their informed consent. (Equality Challenge Unit 2004:47).
2.4 Prevalence, Gender Distribution and Continuation into Adult Life
A National Autistic Society (NAS) survey of the views of 267 adults and their carers
conducted in 1996 emphasised the relative recency of recognition.
‘We are now living with the first generation of people who have an official diagnosis of autism
or Asperger’s syndrome, the oldest being approximately in their late forties’
NAS (1996:2)
Despite difficulties associated with diagnosis, information about prevalence and gender
distribution is available. In 1993:1327 Ether’s and Gillberg published a total population study
of all school-aged children in Goteborg, a sample size of 1401. They concluded that there
was a ‘minimum prevalence of 3.6 per 1000 with a male to female ratio of 4.1. p1327. When
people described as ‘borderline’ were included, the number rose to 7.1 per thousand. Baron
Cohen in Morton (2001) suggests that the figures are much higher, possibly one in two
hundred UK school aged children. (Debbaudt 2002) quotes one in two hundred and fifty in the
USA) Recent prevalence studies clearly do not illuminate the progression of children into
adult life, and do not necessarily articulate the severity of the condition in individuals.
There is some limited evidence, of debatable quality, of clustering in specific geographical
areas. A notable example being Silicone Valley in the USA. Fathers within the ICT field are
the common denominator, allegedly producing a disproportionably high number of children
with autism (Silberman 2001). The findings are included cautiously as little detail of research
design was given, and no follow up study of the Silicone Valley children is available to
ascertain the extent or persistence of autistic features over time.
This study does suggest a concentration of students with AS in science based courses.
The NAS (1996) survey suggested that, at the time of publication, there were around 322500
individuals with autism in the UK. AS was found at that time (NAS1996) to affect between
twenty and thirty people in every ten thousand with nine times more males than females
diagnosed. Kanner’s classic autism was found in four to five people in every ten thousand
with a ratio of four males to one female. As the condition is becoming better known, via the
media as well as between professionals, the numbers identified are beginning to expand.
(Cann 1997, 1998) Since 1996, the increase in diagnosis appears to be startling. (Tantam
2000).
Of particular relevance to this study is Tantam's (2000:61) suggestion that'The recognition of a much larger group of people with AS but with sufficiently good social
functioning to have missed diagnosis previously has also changed our understanding of what
people with AS can achieve'
23
Tantam’s (2002) observation is congruent with the comments of university staff participating
in this study. Each cited examples of students who behaved very like those with AS, but were
undiagnosed. Also a small number were described as being adamant that, despite being
labelled as having AS that they were not prepared to acknowledge this as a disability. This
contributes to the assertion that prevalence information is unlikely to be accurate.
The discrepancy between the prevalence figures quoted can be accounted for, in part also, by
the use of different diagnostic methods. This in itself highlights some of the difficulties
associated with precise diagnosis.
For the purpose of this study the important finding is that AS is common enough for university
staff to expect to come across affected students, particularly in the current climate which
advocates widening participation, of non-traditional learners (Kennedy 1997), lifelong
learning, (Watson and Taylor 1998) and more appropriate support for students with
disabilities, (DDA4 2002 DFES 2004-5, QAA 1999).
Stanford (2003:34) cautions that‘The number of adults recognising their need for as AS diagnosis is growing daily and reveals
a harrowing need for research towards solutions for adults who have received no intervention
or support over the decades’.
Longitudinal Studies
Very few studies have followed people with autism into their adult life (Newson et al 1982,
Attwood 1993, Baron Cohen and Bolton 1993, Walker- Sperry 1995, Wing 1998). Qualitative
changes in behaviour over time have been noted in longitudinal research (Boelte and Poustka
2000). Wing (1998) describes instances where progress has resulted in a shift in diagnosis
from autism to AS.
During this study, anecdotal evidence of students whose history indicates significant autistic
characteristics in their earlier childhood has come to light. This points, possibly, to a potential
avenue of further investigation.
Adolescence is considered by Baron- Cohen (1993) to be a period which can be associated
with deterioration of functioning, with possible onset of epilepsy. (Attwood 1993, Carlton
1993) The early twenties, however Attwood (1993) suggests from his clinical experience, can
be a time of significant progress. Cautious support is given to Attwood’s observations by
Baron Cohen (1993). He has noticed progress in social interactions around the late twenties
including increased interest in people, showing and receiving affection and greater tolerance
of change, provided that appropriate opportunities are made available. Lawson (2001 /2006)
suggests that, over time, people with AS can learn social as well as other skills via the
intellect rather than instinctively. Assistance to develop understanding for example of why
neurotypical people do the strange things they do and how best to respond is something that
Beardon and Edmonds (2007) participants would have welcomed.
Baron Cohen’s (2001) assertion, in Morton (2001)that AS is on the increase, based on a
study of upper primary aged children, may merit further longitudinal investigation given his
observations of progress over time. A twelve year old child, for example, may be very
disabled by AS but may mature into a university student able to cope better than was
originally anticipated.
24
Numbers of Students with AS in HE
Since 2003-04, HESA data has been collected about students who declared them selves to
have an ‘Autistic Spectrum Disorder’ (ASD). The increase over the last three years is startling.
In 2003-04 sixty first year undergraduates declared, by 2004-05, the figure had risen to two
hundred. By 2005-06 three hundred and twenty first year undergraduates disclosed ASD. The
number of higher degree students rose from none in the first year the data was collected, to
twenty in 2004-05, and forty five in 2005-06. Around three quarters of each cohort was male.
Prior to 2003-04 ASD was not available as a separate field. Statistical information is available
from HESA (1994-2005) about the numbers of students with disabilities, classified by
impairment, and accessing Disabled Student Allowance. An increase in those declaring ‘other
disabilities’ from 1735 in 1994 to 5575 in 2003 possibly captured the some of the cohort of
students with AS. Alternatively, HESA and The National Disability Team (NDT) 2005, report
that .065% of the total student population identified as having ‘An unseen disability’ which is
another HESA field which people with AS may have marked, (an increase of lesser
proportions, from 7615 in 1994, to 8775 in 2003 was noted in this category).
Those unwilling to disclose will not choose to tick any of the categories. Because of a
tendency to interpret language literally, it is also feasible that a person with AS would have
avoided marking a box when there was not one available which described their condition as
AS. Data about students with AS who do not access DSA is inevitably limited and unreliable.
Progression Beyond University
Statistics are gathered at various points during a learner's university career, and immediately
post exit. It is possible that people with AS could be identified by this system to an extent, but
again, inconsistently. Croucher (2004), for example, identified destinations of 2002 disabled
graduates, but again, AS was not a discreet category in this research so the findings are of
limited value to this study. Further limitations, identified by Croucher, include the lack of
longitudinal follow up. HE was certainly identified by Croucher (2002;2) as ‘one significant
factor in the success of disabled people in the labour market’ which is unsurprising. BaronCohen (2003) suggests that people with AS are often more successful in occupations
requiring a scientific systemising aptitude rather than highly developed empathy skills. The
extent to which people with AS are under employed, in relation to qualifications, or
unemployed, has not been rigorously investigated but Beardon and Edmonds (2007) cited
numerous examples.A longitudinal study of career progression of graduates with AS would be
a valid project, as a gap in the literature is evident here.
2.5 Mechanisms for Supporting Students with AS in HE
Relevant Legislation and its Influence on Practice
Widening participation and lifelong learning are strategic responses to education legislation
designed to facilitate greater social inclusion in post compulsory schooling. (Action on Access
2005, Ball 1990, Dearing 1997, DfEE 1998, Fryer 1997, Kennedy 1997. NDT 2005. O’Neill
2005). Learners from financially disadvantaged backgrounds, and people who were the first in
their family to go to university, and those who accessed higher education via routes other
than the traditional three A Levels, received a great deal of media attention, and disabled
students tended to be less high profile, in the early days of widening participation. (Dickinson
2005, Wray and Houghton 2007) Consequently, it was difficult, particularly prior to 1994, to
ascertain how many disabled students were going on to university, and the steps they had
taken to get there. HESA (2003) statistics from 1994 onwards describe a steady increase in
25
the numbers of disabled students in HE, based on take-up of the Disabled Student Allowance
(DSA). The information is not a complete picture, as not all disabled students make use of
DSA. There is not a reliable means of discerning across the country whether non- traditional
routes into university are favoured over A levels by students with AS. This study begins a
small-scale interrogation of this, (as well as the age, gender and subject areas).
Tomlinson (1996) signalled a move to facilitating genuine inclusion by advocating a more
flexible, learner centred approach in order to cater increasingly effectively for non traditional
learners, originally in further education and later in HE. The intended focus of Tomlinson was
broader than disability but the report is associated closely with signalling an improvement in
provision for disabled learners and the publication was influential in encouraging practitioners
to think about their pedagogy, and the reduction of potential barriers for students. People with
AS are providing information about their favoured individual learner style which could usefully
inform practitioners. Arnold (2003), Lawson (2006), Grandin (1996) and others provide
examples including single attention, a systematic approach focussing on one thing at a time,
and employing visual strategies. Asperger (1944) was the first to suggest that teaching was
likely to be more use with the affect turned off and the logical systematic approach turned on.
A set of guidelines issued by the Quality Assurance Agency (1999) alerted practitioners to
their responsibilities under the then forthcoming DDA4 (2002). The Disability Equality Duty
(2006) further emphasises statutory requirements to proactively promote and develop a
sound inclusive learning culture. Helping practitioners to gain an understanding of what
inclusion means, and to embrace the underpinning values and benefits to all students, in
practice, is probably more helpful than putting the frighteners on about legal obligations.
By December 2006, all public bodies, including universities, were required to produce a
Disability Equality Scheme (DES) which set out, in a three year action plan, how
responsibilities under the Disability Equality Duty (DED) would be addressed. Proactive
promotion of disability equality at the highest level, and a cultural of active involvement of
disabled people in institutional development were envisaged as an outcome of the DED over
time. Listening to students who have AS is entirely possible within the context of good
practice in disability equality training. Madriaga et al (2008) have started to provide a platform
for students with AS to talk to practitioners and the evaluations have been extremely positive.
In theory then, by 2010 consideration of the requirements of disabled people will be on the
agenda as an ordinary accepted part of institutional planning, and disabled people
themselves will be highly visible in the process.
The phenomenology of the author, as a University Disability Advisor, and Vice Chair of The
National Association of Disability Practitioners (NADP) at the time of writing, could create the
false perception that services for disabled students in HE are now excellent because of the
requirements placed upon universities to improve provision. Mixing with like-minded
colleagues with a sense of ownership of the agenda, and a deep sense of conviction about
the human rights of disabled people, makes it easy to own the remit of the DDA the DED,
and The Human Rights Act (1998) which includes ‘a right not to be denied education’. Staff in
other roles may well have less expertise, different priorities and different passions. Despite
QAA (1999), DDA4 and the DED emphasising the shared responsibility of the institution,
anecdotal evidence would suggest that there is still a sense of locating ‘disability issues with
the disability officer’. In reality, disability officers and those with similar roles are likely to have
far more understanding of the agenda than do other staff in the institution. The author is
26
mindful in this study that participants have self selected because of a desire to know more
about working with students with AS. Their view should not therefore be taken as
representative of the whole institution which may well contain other staff with little interest.
Increasingly, however, strategic planners are required, as a result of legislation, to develop
inclusive practice (Adams and Brown, 2006, Adams and Holland 2006, Hall and Stahl 2006,
Hurst 2006, Wilson and Holland 2005, Wray and Houghton 2007) so the conditions for
improvement are favourable.
The purpose of this research is to encourage staff to find ways of working more effectively
with students who have AS, rather than to frighten them about the implications of falling foul
of DDA4. Because AS is a condition which can be surrounded by ambiguity, the concept of
‘reasonable adjustment’ can be hard to define.
2.6 Pre-HE Experience
Concerns around Transition from School or College to University
There is a range of post compulsory educational opportunities for people with AS (Breakey
2006, Howlin 1997, Martin 1999, NAS 1997, Nesbitt 2000, Siddles and Collins 1999).
Students may spend time in sector colleges of Further Education before progressing to
university. Some progress from school or Sixth Form College and a smaller number enter
university from the specialist Further Education sector. Routes into HE, and the age of
university entrance are investigated in this study, as this information is not available in a
coherent form from another source at this point. Datlow -Smith et al (1995), Martin
2005,Mawhood and Howling (1999)NAS Prospects (2008) provide information about
supported employment which is not interrogated fully here but is relevant to school and FE
leavers and university graduates.
Just as transition from school to college can be traumatic, preparation for the next step
beyond HE requires careful planning. ( Bicknell 1999, Breakey 2006, Harding 1999, Luckett
and Powell 2003, NAS Prospects 2008, Pozner and Hammond 1993 ,Snowden 2004).
Despite the contention that life changes can be particularly traumatic for a person with AS,
there is, however, a paucity of literature about transition from school or college to university.
This study will contribute some case study information to the pool. Madriaga et al (2008) are
currently developing the theme further.
Some small scale practitioner research on the experiences of students with autism studying
in Further Education colleges, and making the transition from school to college are available.
Much of the documentation highlights examples of the environment not meeting the needs of
the learner. (Baron Cohen 1993, Breakey 2006 Maclean-Ward 2003,Martin 1999, Howlin
1997, NAS 1996). Most do not follow students through for a sustained period, and all pre date
the DED, but good practice ideas are drawn out of these studies where appropriate.
Allen and Dickinson (2004), Duke (2004), Holland and Wilson (2004), Madriaga (2006)
Oosterhoorn (2005), and others have considered the HE transition experience of other
disabled or disadvantaged students. This information forms a useful starting point for
comparison with the experience of those with AS. It is important to take into account that
many people find progressing to Higher Education challenging for a range of reasons.
Madriaga (2006) cites instances where disabled students have encountered discouragement
and what they have perceived to be negativity about their potential to progress to HE, from
27
parents and professionals. It would be interesting to ascertain whether people with AS who
have not accessed HE have had similar experiences.
Inclusion
The development of inclusive learning in the further education and school sector (Dyson 2001
Dyson and Millward 2000, Farrell 2001, Hesmondhalgh and Beakley 2001, Pinney 2002,
Tomlinson 1996, Wedell 2002) has resulted in an increase in the percentage of individuals
with autism being educated alongside their neurotypical peers. A greater degree of inclusion
prior to HE may result ultimately in an increase in the number of students with AS in the
university sector. This study looks for evidence of an upward trend.
Although the political climate emphasises inclusion, Cann (1998) Jordan (2001) and others
caution that a 'mainstream' educational environment may not be appropriate for all students
with autism. Their assertions are based mainly on the school age population, and relates
particularly to people who struggle with sensory overload and high levels of anxiety around
changes in routine. Some students may access university having had the experience of a
special school or specialist college environment. The extent to which this occurs is currently
unknown. Arguably, the transition from what is essentially specialist to mainstream may be
especially complex. Increasingly, pupils attending special school experience a greater degree
of overtly autistic symptomatology, but it is important not to rule out the possibility of access to
HE via the special school, specialist college route. A limited number of specialist sixth form
and FE colleges cater for people with AS, and the author knows of students who have come
to HE via this route.
Additional Support Prior to HE
Accessing formal additional support in mainstream school involves a complex process of
('statementing' for special educational needs (Pinney 2002) People with AS who were coping
academically may well not have the opportunity to use this resource. In addition, factors
around AS going undiagnosed while the child is of school age (Attwood 2000) will mean that
some learners reach university having not utilised effective statutory learning support in
school.
In the Further Education sector, the processes for providing learners with additional help is
more straight forward (Learning and Skills Council 2004). However, it is still possible for a
student to go through this phase without formalised additional support.
Participating students’ are asked about their previous educational experience, including their
learning support, in this study.
Assistance to deal with the upheaval of transition may be lacking or at least not formalised for
learners who did not access statutory learning support pre-university, or are coming to HE
having had a break in education.
Engagement of other agencies during transition and beyond is considered within this study.
'Connexions' (DfEE 2000) is currently the statutory vehicle to support vulnerable young
people in transition from school to further education, work or training, and may be fulfilling a
positive function for individuals with AS. At this stage it is too early to tell as there is only a tiny
amount of case study information. One case study (Martin 2004) cited the unfortunate
example of a young man with AS being asked, by a Connexion’s Personal Advisor, about
28
whether he had a disability and replying that he did not. To his distress, his response was
contradicted with the comment ‘It says here that you have got Asperger syndrome’. It is
possible that this unfortunate incident is a one-off, but it signals the need to equip staff
working with people with AS in transition with a level of awareness which may be currently
patchy.
A limited quantity of case history documentation about students with AS progressing from
school to colleges of further education is available. (Breakey 2006, Howlin 1997. Martin
2000). There is not a comparable body of literature about progress to university. This study
aims to begin to address this gap, and Madriaga et al (2008) develop the theme further.
A minority of students moving into FE had the opportunity to experience school college link
courses during their final year. Howlin (1997) and Martin (1999) found that these transitional
arrangements were most effective when named school and college staff liaised closely and
adopted a flexible student centred approach. Difficulties around funding school to FE link
programmes (Further Education Funding Council 2001. Learning and Skills Council 2004),
mean that this type of opportunity is not universal. Communication between agencies will be
explored within this study.
FE Courses
Some students with AS accessed further education provision designed for students with
intellectual impairments. Concerns have been expressed about the suitability of these college
courses for learners with AS. Progress to university from this route is unlikely.
‘Students with autism will almost by definition be impaired in certain areas especially those
related to communication and social understanding, but may have much higher levels of
academic competence.’
Howlin 1997:169.
A mother from the NAS 1996:29 survey described her worry that her academically able son
‘Does not fit in anywhere socially’.
Widening Participation
Widening participation (Kennedy 1997) means that learners now enter university from 'nontraditional' routes, i.e. not necessarily via GCSE’s then AS and A2 levels. Establishing routes
taken into university by the students with AS in the study will begin to test the assumption that
learners with AS access university via non traditional routes.
2.7 Coping with Change
Because coping with life changes poses particular challenges to individuals with AS (Ariel and
Naseef 2006,Attwood 2000 /2007, Bogdashina 2005, Breakey 2006, Hermelin 2003, Lipp
2006, Tammett 2006), there is a body of more general documentation which illuminates this.
Taking insights from other contexts is useful to provide a broad background upon which to
develop the discussion. The experience of learners with AS adjusting to HE is not well
documented (Madriaga et al 2008).
A NAS (1996) survey of 267 carers highlighted the transition from child to adult social and
health services as a particularly difficult time .The reaction of the individual with AS was only
one of many stresses described by their carers. 82% of services lacked awareness of the
29
condition and failed to co-ordinate their efforts. For 67% of carers the information about
changes in benefits and the availability of post school education and social services was
scant.
Fears for the future commonly expressed by parents (Attfield and Morgan, 2007, Boushey
2007, Hocking 1990, Hodge 2005, Roberts 1995, Shore 2006). Progress to university may not
have seemed possible as their child was growing up (Madriaga 2005). Accommodating the
idea may well require a major realigning of expectations. Research around this theme is
lacking. However, examples of people with AS and their families having very little support
from outside agencies are common (Beardon and Edmonds 2007,Guardian 2004 Martin
2004), so it is logical to assume that parents may be struggling with little help. For students
going to university, a geographical move may be required possibly resulting in local support
networks (whether statutory or informal) which have been built up over time being lost. (Martin
2000, Madriaga et al 2008)
Working Together
A collaborative, multi agency approach with includes guardians and focuses on the
requirements of the individual across contexts is widely considered to be ideal practice in
enabling someone with AS to cope with life changes (Tomlinson 1997, Social Services
Inspectorate 1996, Howlin 1997). The perspective of the university student with AS may not
be congruent with this view and their experience may or may not include extensive back up
from a range of service providers. Issues around confidentiality of information under DDA4
2002 and the Data Protection Act 2001 and the danger of assuming, without asking, the
extent to which the person with AS wants their parents, or other people involved, is
discussed.
Many guardians in the NAS (1996) survey expressed frustration about the apparent failure of
professionals to appreciate not only how difficult it can be to live with an autistic person but
also the wealth of experience which carers could share if given the opportunity. (Carpenter et
al 2004 Harris 1994) The students with AS are the focus of this study, and while the
contribution of parents and others is acknowledged, respect for the learners perspective has
to be paramount. Therefore, participating students are asked to identify significant
professionals, friends and families that they feel could provide useful insights. Contact with
people not indicated could undermine the students and would raise ethical questions around
confidentiality. Harpur et al (2004) also acknowledge the importance of the student with AS
having some control about interaction between their parents and university staff.
Sensitivity about the recency of diagnosis and other personal factors relating to adjustment
and acceptance of AS as a label is also a critical ethical pointer in this study which aims to
empower not disempower. Ashton – Smith (1997) cautions that, in the case of late diagnosis,
support and additional information will be required. Consideration is given to ensuring that this
study does not open up issues for people with AS who then find that they do not have an
avenue in which they can explore aspects of adjustment adequately. Beardon and Edmonds
(2007) found post diagnostic support to be sadly lacking.
The ‘All Party Parliamentary Group on Autism’ (2003) emphasises the importance of multi
agency working. There is not a body of research which interrogates how far this is a reality for
people with AS going to university. This study makes a start by asking the participants
relevant questions.
30
A named person to co-ordinate services in transition has been found to be effective between
school and FE College, and into work. (Howlin 1997, NAS 1996, Nesbitt 2000,)
‘A planned and gradual introduction into college life during the final year at school is often the
most successful form of preparation for both students and college staff’
Howlin (1997: 175)
For FE students who have some backup from agencies such as Social Services, transfer to
college often coincides with a shift in responsibility from child to adult services (Martin 2002).
Professionals familiar with the student moving onto HE may be unavailable, especially, for
someone relocating to another part of the country.
College staff are advised by Howlin (1997) to make use of the knowledge and guidance of
parents, and staff in secondary school, when planning school link provision for learners
moving into FE, and a version of this may be applicable HE. Examples of summer school
provision designed to increase familiarity in order to smooth transition are cited in this study.
Involving students in the decision making process about how information is shared is critical,
not only for DDA compliance, but also as a mark of respect for adult status. (Harpur et al
2004).
Examples of successful interventions with older students from Social Services day centre
provision accessing further education are also quoted by Howlin (1997:176) who suggests
that the critical success factor was ‘a gradual flexible approach to college entry’.
Geographical moves, and the late offer of a place, depending on grades, create further
complexities for student going to university a distance away from their home town. The extent
to which learners with AS choose to study near home is also considered.
The degree to which parents, carers and others and statutory agencies can contribute to
transitional planning at the university stage will be affected by factors including geography
and whether the person with AS is prepared to give the ‘informed consent’ necessitated by
DDA4 for information to be shared.
Structured Routines
The development of structured routines with built in strategies to make them predictable has
proved successful within the context of school and FE. Mesibov et al (1994), and Mesibov
and Howley (2003) describe the TEACCH approach, which originated in schools but has
obvious application to college and possibly university. (TEACCH stands for ‘Treatment and
Education of Autistic and Related Communication Handicapped Children.). The TEACCH
approach emphasises.
‘Physical organisation, schedules, individual work systems, visual structure and routines’
Mesibov et al (1994:195).
Hare (1997) and Howlin (1997) both advocate an adapted form of the TEACCH approach in
post compulsory further education. Howlin suggests that,
‘Even leisure activities or obsess ional behaviour may need to become part of the daily
timetable’.
Howlin (1997: 181)
31
Caution about application of strategies designed for children in schools, to the context of
adults at university, is exercised in discussion, and reflected in subsequent recommendations.
Hare’s (1997) work on the incorporation of ‘Red Letter Days’ in daily routines is interesting.
Hare describes incorporating activities that an individual can look forward to into the routine
as a useful approach to minimising the likelihood of depression in the context of Social
Services Day Centres. Having something to look forward to can only be a positive thing.
Harpur et al (2004) provide practical advice to HE learners with AS about developing routines
for themselves and parallels can be drawn here between strategies used in school and FE.
Teaching relaxation techniques was tried by Csoti (2004) to alleviate anxiety with a small
sample of teenagers with AS. It was found to be less effective than using distraction, time out
and physical exercise. Results from a small-scale study, outside the HE context, should not
be over emphasised.
2.8 Curriculum versus Support
Within the context of school and FE, it is possible, if required, to develop a curriculum which
addresses the core skills necessary to function as well as possible in the social world. The
sort of focus this entails is explored here but the extent to which these learning experiences
would even be defined as curriculum within the context of HE is an interesting discussion
point. An individual with AS may be in desperate need of opportunities to acquire the
competencies and coping mechanisms described here, in order to function at university. It is
likely that HE support services would need to pick up this agenda, in order to facilitate access
to the students chosen academic subject.
Maslow (1970) describes a ‘Hierarchy of Needs’, which suggests that learning, a higher order
behaviour, cannot take place if lower order needs are unmet. The requirement to feel
comfortable (warm, rested, fed and watered), and safe needs to be addressed before
effective study can occur. Put simply, if someone feels hungry, thirsty, tired, upset and
worried, they are not likely to be in a frame of mind where effective learning can occur. A
need to feel accepted and have a sense of belonging is also identified by Maslow as a prerequisite to engaging emotionally with higher order activity. This contention has not been
interrogated with people with AS and suggests another potential avenue for useful research.
Examples of curriculum from schools and FE are relevant here, and can be adapted to
provide pointers for good practice in the context of additional support in HE.
Tomlinson 1993 Attwood (1993) and Powell (1994) advocate focussing on preparation for
adulthood for school leavers. Age appropriate activities in the areas of; independence skills,
community awareness, recreational pursuits and vocational tasters are seen as core
elements. Teaching practical skills in real rather than simulated settings and providing
opportunities for generalisation across contexts needs to be built into curriculum design in
order to make acquired skills functional. (Howlin 1997) Social skills training must also take
into account the need to enable the student to cope with the social conventions around
particular activities and to develop problem solving strategies in order to cope better with
unexpected occurrences.
32
‘It is not the physical aspects of the task (…dialling, using money…) which necessarily pose
the difficulties, but the social conventions that surround these, how to start, maintain and
finish the phone call, how to wait politely for ones turn in the supermarket queue, or how not
to stare at people on the bus’.
Baron – Cohen and Bolton (1993.68).
A learner with AS accessing independent living for real for the first time is likely to be
challenged by practical tasks. How far the university is set up to cope with the demands this is
likely to place on support services requires consideration. Problems are likely to arise if
assumptions are made about the life-skills the student with AS has, and their ability to apply
them in novel contexts.
Social stories have been used with some success by Rowe (1999) to help autistic children to
develop empathy. In HE, activities to develop empathy are unlikely to appear on the
curriculum, although support services such as counselling may offer such opportunities.
Thompson (2004) cites strategies used effectively to help partners with AS to see the word
from the point of view of their unaffected spouse, within the therapeutic context of couple
counselling.
It is easy to assume that HE students arrive able to do all this, i.e. to look after themselves, to
get along with people and to solve problems as they arise. This assumption is particularly
likely to occur if presented with a highly articulate, superficially sociable bright enthusiastic
individual (who may have been ‘packaged’ by parents to look clean, tidy, well organised and
in control). It is possible that the student is trying hard to fit in with everyone else and to keep
anxiety in check. They may well have difficulty sustaining this behaviour over time,
particularly if confronted with the uncertainty of change and the pressures of daily life without
adequate support. When the suitcase of clean washing is all used up, –what next? Because
difficulties may not be obvious to staff or concerns may seem trivial or easy to overcome,
appropriate empathic support may not be readily available.
A learner with AS may require at least elements of the support described in the preceding
paragraphs to develop independent living skills and coping strategies. In FE it is possible that
this activity could be badged in terms of curriculum. Imaginative services in HE may be
necessary to address this sort of learning.
Advocacy has been used with some success in Further Education to empower students who
find communication difficult. (Snook 1999). Mentoring has been found to be of value to others
but the exact definition of what a mentor is and what a mentor does is fairly illusive in the
literature. (Baillee and Tunnock 2004, Pegg 1999). There is room within the provisions of the
DSA to facilitate similar support in HE, but no data is currently available about the sort of
recommendations made.
Learner Style
Good practice in inclusive learning suggests that teaching methods need to be sensitive to
learner style. Tomlinson (1993) Arguably, for support strategies to be effective, intervention
should be sensitive to the ways in which an individual prefers to assimilate and utilise
information.
Bearing in mind potential difficulties with generalising across contexts, strategies to promote
independence needs to be cognisant of this, and make explicit links between similar
situations to provide props for application of understanding in novel situations. (For example,
33
by drawing upon the similarities between having a burger in Macdonald’s or Burger King to
make either experience a bit more predictable).
Guidance relating mostly to interventions with school age learners with AS is available.
Assumptions about the transferability of this advice to the HE context cannot be made. The
adult status of the learner and potentially a feeling of not wanting to be singled out for different
treatment (Holliday- Laing 2004), require careful consideration.
For school age students, the use of video is suggested by Baron – Cohen and Bolton 1993 as
a means of providing feedback. Mesibov et al (1994) suggests that multi sensory approaches
with the emphasis on visual learning strategies can be effective. There is some anecdotal
evidence from individuals with AS that their visual perception is acute. Johnson (2005)
Wiltshire (1999)
Newson (1993) and Martin (1999), found indicators of dyslexia in children with a diagnosis of
AS and used this information to strengthen the argument that multi sensory approaches,
similar to those used with dyslexic learners, may be valuable. No clear longitudinal follow up
interrogated the idea further. Disorganised behaviour, making learning more difficult for
learners with AS in HE was referred to frequently by Harpur et al (2004). Despite lack of
personal organisation being a common dyslexic characteristic (Cottrell 2003) the possible link
between AS and dyslexia was not flagged up in the work of Harpur et al (2004) which is
aimed directly at students with AS.
A curriculum which is sufficiently flexible to allow any areas of exceptional ability to flourish
will capitalise on natural motivation. (Pring et al 1997) Howling (1997) recommends a
modular structure, which is able to provide a range of choices.
2.9 Support in HE
The provision of additional support for students with AS via the Disabled Student Allowance
(DSA) requires careful assessment of individual requirements. Following this,
recommendations are made about the most appropriate intervention to facilitate learning.
(DfES 2006-07). Equipment, including enabling technology, such as screen reading and mind
mapping software may be recommended. Support from tutors, mentors, note-takers and
similar can be funded via DSA. In addition, allowances for books, consumables, travel and
miscellaneous other things may be recommended. Careful justification to support the
recommendations is required in order for the Awards Officer from the students Local
Education Authority to be convinced that the requirement is disability related. Arguably it is
easier to justify the provision of a signer for a deaf person who uses British Sign Language,
than it is to back up a request for the student with AS to have extra travel allowance and a
laptop, so they can go to their parent's home to work at weekends in order to alleviate
potential anxiety.
Disability Premium Funding is also available to provide general facilities, including for
international students who can not access DSA. It is possible to gain information about the
premium funding allocation for institutions from HEFCE, but not always easy to pinpoint
where it has been spent, as the audit trail is not rigorous. The extent to which this source is
used appropriately to enable people with AS is unknown. Arguing for physical alterations to
facilitate access for a student unable to use stairs, may be easier than ensuring that a
34
particular location is staffed in case students experiencing problems with anxiety require a
point of contact.
Reasonable Adjustments
QAA (1999) and DDA4 (2002) emphasise the requirement to make 'reasonable adjustments'
to enable people with disabilities to access university. The Disability Equality Duty(2006),
reinforces and strengthens the need for the public sector (including HE) to be proactive in
promoting equality of opportunity for disabled people .This study considers what is reasonable
and ponders the impact of the legislation. As with any hidden disability, subtle, less visible
adjustments, involving modification of social interaction for example, may be best practice.
Increasingly, staff are aware of less complex requirements which relate to, for example,
physical access. When a student, with an unseen disability, behaves in a way, which
challenges, the requirement to reasonably adjust is not as clear-cut. Grooden et al
(1994:190) for example suggest that ‘one function of maladaptive behaviour such as
tantrums, aggression and self-injury, is the reduction of stress and anxiety’. Maclean-Ward
(2003:21) considers that the exhibition of behaviours which challenge others may arise
because of ‘a mismatch between the person’s skills and the environmental demands’ .A
reasonable adjustment could be therefore to address this barrier.
Relationships
Problematic relationships between individuals with AS and their peers are documented and
would suggest that individual may, on occasion, be vulnerable to bullying or exploitation.
Addressing subtle issues around interactions between peers is arguably an example of the
nebulous edge of reasonable adjustment and not simple to resolve. For school and further
education students, the NAS (1996) and Martin (2002) advocate that support must be
available outside the classroom as well as during lessons, including intervention to facilitate
interaction with peers. Interaction between students with AS and staff also require
consideration. Instances of difficult dynamics are reported but have not been carefully
investigated. Relationships, by definition, involve two or more people, and the expectation that
the person with AS should do all the changing is unreasonable (Beardon and Edmonds
2007).
Pukki (2003) cites examples of people with AS becoming involved in sexual relationships
which could be described as exploitative. Research into this area is extremely limited and
signals another potential avenue for further investigation. Pukki’s 2003 study is limited to four
participants, but includes data on sexual exploitation via the Internet, which is another vast
under researched avenue. Harpur et al (2004) provide students with AS with some welcome
guidance about safe sex. Follow up about how students with AS have used the information is
not available. Ethical considerations about potentially intrusive research methodologies would
need to be considered if this was to be explored further.
The question about whether it is ever appropriate to explain the reactions of a person with AS
to other students is in one way extremely contentious and in another, absolutely clear cut.
DDA4 is unambiguous on the requirement to attain informed consent before discussing an
individual with a third party and this right is also protected via the Data Protection Act (1998).
Therefore, the need to negotiate with the person with AS is a given as it is a legal requirement
as well as an ethical imperative. An unpredictable variable is how the recipients of the
information may react, therefore extreme sensitivity is essential. (Martin 2007).
35
Howlin (1997) emphasises the expertise parents and carers may well have, but the balance
between the perceptions of others with those of the affected person is delicate. DDA4 (2002)
and QAA (1999) provide clear guidance about confidentiality Parents and carers may
contribute their points of view if invited to do so by individual students, and the information
they have to offer is certainly of interest. Archer (1997) Madar (1999) Nind and Powell (1996),
and others make the point that listening to the person with AS and their carers is the first step
to comprehending aspects of behaviour. However there is no debate about the fact that
ownership of the disability lies with the person with the disability (Equalities Commission
2004). Listening to those with first hand experience of AS currently engaged in attempting to
cope at university will reflect their reality, which may not necessarily be congruent with the
perceptions of a third party.
The importance of having a positive attitude cannot be overstated. Attempts have been made
to attribute characteristics of AS to people of recognised genius in history. Baron Cohen in
Morton (2001) possibly this was motivated to an extent by the hope that the information would
appeal to academic staff. Einstein, Wittgenstein, Bill Gates, Lowry are amongst a catalogue
of celebrity brains quoted by Attwood (2000) Tantem (2001) and others. This may be a helpful
device to encourage university staff to ‘think positive’. The possible impacts of inadvertently
setting up unrealistic expectations amongst professionals, and /or putting pressure on people
with AS to achieve like Einstein or Bill Gates are worthy of consideration.
Insights into the negative effects of other people’s reactions are provided by a few articulate
people with Asperger syndrome (Beardon and Edmonds 2007). ‘It’s a tragedy to walk a
lifetime path of disapproval’ Lee- O’Neill (1998:201).
Empathy
Literature about the development of Theory of Mind, including empathy on the part of the
person with AS is extensive (Baron Cohen 1998, Frith 1996, Howlin et al 2003, Johnson
2005). The emphasis of such documentation is on the development of the ability to empathise
by the person with AS or HFA. In this study consideration of the perspective of the student
with the condition, in relation to the empathy they receive (or require) from others is given.
The view that ‘empathy is a two way street’ is elucidated here and finds support from
Thompson (2004) and others.
There is a growing body of documentation in which people with AS have tried to explain their
thought processes and actions to other people. One young man described his struggle to
‘understand scientifically what others understand intuitively’. (Ashton- Smith 1997: 239). A
woman with Asperger’s syndrome suggests that,
‘We do our obsessions and rituals to achieve preservation of sameness as reassurance I
think’
Strategies to Develop Emotional Well- Being
There is a dearth of information about interventions to promote emotional well-being within
the context of HE. Some examples from outside the university context, but which may have
some application, are discussed here.
Cognitive Behavioural Therapy was used with an individual with AS by Hare (1997) as a
strategy for tackling depression. One aspect of the approach was to introduce ‘Red Letter
Days’ into a written timetable of daily activities, which was used to provide structure and
36
predictability. The ‘Red Letter Days’ highlighted future enjoyable events and facilitated looking
forward. Attwood (1993) and Hare (1997) also advocate the positive effects of exercise.
Antidepressant medication is also sometimes used to lift the mood and alleviate obsessive
behaviour. (Carlton 1993, NAS 1996) Many of Beardon and Edmond’s (2007) participants are
of the view that providing more reliable services would work better.
To counter the argument that ‘obsessive behaviour’ is necessarily a negative thing which has
to be controlled, Johnson (2005), describes the joy he gets from his ‘obsessive interest in,
and ability with numbers’. This illustrates the need to empathise with individuals with AS
rather than making assumptions that aspects of behaviour are necessarily negative, without
having a clear understanding of the underlying motivation.
2.10 Staff Development
There is limited literature about the sort of directly relevant staff training activity currently
available, and precious little which is specific to the university sector. An overview follows
which highlights the limitations of currently available resources.
Robinson (2004) compiled a list of accredited courses in autism which included seven
programmes ranging from a certificate in higher education to a post graduate qualification at
that time. Masters and doctorate level provision and distance learning options are now
available, for example at Sheffield Hallam University Autism Centre. None focussed
specifically on the requirements of university students with autism or AS in 2004, but all
provide relevant background information, and some provided the opportunity to focussing a
dissertation on this theme. A ‘Certificate of Higher Education for DSA Practitioners’ was
validated by the University of Derby in March 2005 and includes a module, which relates
directly to supporting students with AS in HE, Evaluation date is not yet available.
The NAS and commercial providers of staff development, have access to a range of
consultants covering HE. Evaluations are available for this study from the sessions offered by
the author only, and will be discussed later. NADP and other providers, are ensuring that
students with AS contribute to staff development, in keeping with the ethos of the DED that
disability equality training should be delivered by disabled people. This is a recent
development. Increasingly, students who have AS are in a position to put their views across
(Beardon and Edmonds 2007, Madriaga et al 2008).
Hurst 2006, Tomlinson 1996, and others emphasise the importance of staff development
designed to embed an understanding of the concept of inclusion. It is relevant to consider the
potential impact of progress towards a more inclusive ethos and arguably an increasingly
student centred environment. The relative merits of 'impairment specific' staff training events
and those designed to achieve a cultural shift towards inclusion emphasising the positives of
diversity rather than problematising disability, require careful consideration.
This study scrutinises the views of participants, about the value of the staff training they
have received, in relation to developing their ability to support students who have AS
effectively.
37
2.11 Critical Review, Indicating Gaps in the Literature
The literature review has demonstrated that an extensive body of documentation exists which
describes the impact of the relationship between AS and the environment for children and
adults. Few studies have interrogated the changing responses of individuals over time.
Many prevalence studies, of varying quality, have been conducted, but no reliable information
is available about the number of university students who have AS.
Only a smattering of literature describes first hand or interpreted experience of studying at
university with AS. Detailed exploration of a range of factors, which may facilitate university
success, viewed from a variety of angles, is lacking.
Staff Awareness
Evaluation of relevant staff development is limited. There is very little research about how
much practitioners know about the delivery of effective services.
Interventions in HE
The research drawn upon includes very few examples of systematic longitudinal study of
useful services in HE, therefore represents a snapshot in time rather than an exploration of
changing perspectives over a sustained period.
Prevalence in HE
The current flawed situation in relation to diagnosis, and the inability to predict how many
students there are with AS in HE who are not accessing the DSA, mean that any literature on
prevalence in HE is necessarily unreliable.
Assistance Available in Post Compulsory Education
In the absence of a body of HE specific literature, ideas about successful interventions from
other sources, outside education, are also considered in relation to their possible application
within the university setting. Evaluation of interventions is scant.
Research designed to systematically interrogated the efficacy of HE services to disabled
students, is particularly timely as the DSA system is currently undergoing scrutiny from the
perspectives of whether it represents value for money, and – or is the most appropriate
system .
Support for People with AS in Transitional Phases
There is little available longitudinal research following people with AS during transitional
phases in their lives. The extent to which HE staff have enough understanding of AS to grasp
the importance of careful transition is unknown.
Necessarily, students who have agreed to participate in the studies cited have reached a
point where they are prepared to acknowledge that they have AS. People who have not
arrived at this stage do not have a presence within the studies cited, or this material, therefore
their contribution is not available to broaden the debate. The potential limitations this presents
are acknowledged. Such consideration is generally lacking in the vast majority of available
documentation.
38
Current HE Climate
The environments in which learners operate within the UK education system have received
some explanation within this literature review, from the perspectives of the political climate of
social inclusion and resulting trends in widening participation, and with reference to disability
legislation. The interface between these agendas and the requirements of students with AS is
under researched.
Summary
It has been necessary to broaden the literature review beyond the narrow focus of HE. The
purpose of this has been to draw upon relevant aspects of the life experience of people with
AS, and the potential adaptation and application of strategies from other settings to the
university context.
Looking further a field was also necessary because of the absence of a sizable body of
relevant high quality research more narrowly congruent with the aims of the study. By drawing
out salient points and casting a critical eye over a large body of documentation, and the inter
relationship of data from various diverse sources, the literature review provides a flavour of
the current level of knowledge and understanding of issues related to the central theme.
Much of the research relating to supporting people with AS is criticised because of failure to
include a coherent evaluative dimension from the perspective of service user, service provider
or from other viewpoints. This study goes some way towards defining what could constitute
good practice in supporting students with AS in HE by evaluating current practice in terms of
it’s effectiveness, from a range of perspectives. The student voice could be louder.
Purpose
In summary, the purpose of the study is to evaluate strategies currently employed to assist
learners with AS in UK universities, and to make use of the findings to create good practice
guidance to enable staff to deliver more effective services.
Hypothesis
The hypothesis that students who receive inadequate or inappropriate support are less likely
to do well than those who have access to adequate backup is interrogated via analysis of a
large amount of data from a range of HE practitioners. All are engaged in working with people
with AS in various capacities, within a variety of institutions.
Additional data from a small representative sample of students, and a smaller sample of
mothers, is also included, though not the primary focus . While this does not attempt to
represent a balance between staff and student/parent responses, to fail to include the latter
dimension would be to ignore the perceptions of the main stakeholders in the process.
The original hypothesis is broken down to the following sub hypotheses with a view to
ensuring that the subsequent investigations yield information which is of practical use.
Information gained by interrogation of the following will be used, along with that described,
later within this section, under ‘Specific Aims’, to inform the creation of Good Practice
Guidelines.
Sub -Hypotheses
 The number of students with AS in HE is increasing.
 Students with AS enter HE from non-traditional routes.
39



There is a concentration of students with AS on science- based courses.
Support available to learners with AS in HE is not consistently effective.
University staff do not feel adequately prepared to deliver effective support to HE
learners with AS.
The methodology allows for the investigation of current services in place for students who
have AS in participating UK universities, and consideration of factors which may have
contributed to student success. It also forms a basis from which to ascertain whether students
with AS are appearing in increasing numbers within the participating universities, which
represent a cross section of the sector.
Background information is gathered from staff about the source and substance of their
knowledge and understanding of the requirements of learners with AS with the aim of using
this to interrogate the rationale underpinning various interventions.
The extent, source, quality and application of staff development to inform action in this context
are also considered. By finding out about opportunities personnel have been afforded to
develop their understanding of AS it is possible to gather an impression of whether there was
evidence of a mismatch between the sort of staff development and backup staff feel they
require, and the availability of appropriate opportunities.
The methodology has translated the original objective, and hypothesis of the study into the
following set of specific aims.
Specific Aims
To quantify numbers of students with AS in 17 participating universities, their, age and gender
profile, chosen courses and routes into HE.
To identify effective and ineffectual support practices in the 17 institutions, and to use the
findings to generate useful guidelines to staff on providing assistance for learners with AS in
HE, which can be applied beyond participating universities.
To draw together good practice guidance for staff working with learners with AS in HE as a
result of the findings of the research.
The study is organised so that information can be presented in a way which could usefully
enable staff, working in a variety of capacities, with learners with AS in HE, to be more
effective in their role.
Context and Participants
179 practitioners, from various disciplines, with direct experience of 109 students with AS,
studying in 17 universities, representing a cross section of the sector, formed the bulk of the
target population. In addition eight students with AS, and the mothers of three of them,
provided further stakeholder feedback. The student sample represented all categories of
university except Oxbridge, both genders, a range of courses, and the most frequently
occurring age profile.
40
Method
Qualitative analysis of commentary gathered via questionnaires was the primary method, the
detail of which is expanded within this chapter. Simple quantitative data was also obtained
and this was interrogated to the extent to which this would be useful to achieving the aim of
enhancing good practice through raising staff awareness.
Rationale
Quantitative data to ascertain any increase in numbers of students with AS in HE, their
gender, age, ethnicity, location in particular disciplines, and route into HE, could be gathered
relatively simply via questionnaire. Presenting this in ordinal form provides sufficient
information and further statistical analysis would not increase the usefulness of the
information in relation to it’s intended purpose. Therefore, the methodology employed was to
collate the information and present it in simple percentages in various categories.
Caution about over interpreting this data is discussed further later. Essentially, an element of
subjectivity is unavoidable. Participants may not accurately remember information from
several years previously, may have reached conclusions about students having AS, who were
not necessarily diagnosed as such, as may have interpreted the questions in the
questionnaire idiosyncratically. (Bell 1993, Fink 1995, Powney and Watts 1987).
The information will be used to identify any increase in numbers and any patterns in choice of
course and to find out about pre- university educational experience. The limitations of the
approach are acknowledged and the application is no broader or deeper than to form an
impression, which can be interrogated further in subsequent research.
The essence of the study, in relation to translating the findings into beneficial advice for staff
lies in the analysis of the qualitative, phenomenological data yielded by the open- ended
responses of participants. ‘A phenomenological stance views a person’s own perception of
the world as primary’ (Coolican 2004: 229). The approach is applied to participating students,
mothers and practitioners. Inevitably, responses from subjects in each category reflect the
unique perspective of every participant. Darling- Hammond et al (1986), Weiss (1986) Smith
(2003) and others caution that the perception of the researcher is reflective of their own
experience to an extent; therefore an element of subjectivity is built into the interpretation of
data. The author has extensive background on which to draw from professional contact with
at least forty students who have AS. An awareness of the danger of subjectivity, based on
interpretation of past interactions, provides some safeguard against falling into the trap of
reporting what was expected, rather than the actual responses.
Ethical Considerations
British Psychological Society (BPS) 1997 ‘Ethical Guidelines for Research with Human
Subjects’ were adhered to within this study. The principles of informed consent,
confidentiality, and transparency of purpose were followed. Participants were free to drop out
at any time and clear about confidentiality, how information would be disseminated, and
mechanisms for providing feedback. The control of the project lay with the researcher who
does not have AS so it is not possible to claim that the work conforms to the principles of
emancipatory research. (Oliver in Barnes and Mercer 1997).
Cautions expressed by Flanagan (2000) and others about making sure the protocol did not
induce stress in respondents were particularly pertinent in relation to students. Careful
attention was given to this point, and the views articulated by learners within the pilot.
41
Gale (1995) and others emphasise the importance of ensuring that consent is truly informed,
in that subjects evidenced real comprehension of the nature of activity. Again, particular care
was taken as this point is critical in relation to people with AS who sometimes experience
comprehension difficulties. The potential vulnerability of student participants, in this and other
respects, was a central consideration within the research design, as advised by Gross and
McIlveen (2003) and others.
Good practice in safe storage of data was followed for ethical reasons, which were also
applied to maintain anonymity of respondents. Henry (1995) suggests that a greater degree
of honesty is likely within anonymous contexts. Because of the relatively small number of HE
students with AS, it was crucial that any identifying reference should be avoided. To do less
than this would represent a betrayal of trust. A trust relationship between researcher and
respondents is essential within the context of ethical research.
As previously stated, it is not possible to claim that the study represents emancipatory
research practice. Disabled participants did not truly contribute to its design or have real
ownership of the process, or control of the resources. (Oliver in Barnes and Mercer 1997).
The researcher aimed to represent views of all participants faithfully and use the findings to
begin to address an aspect of oppression of a group of disabled people in a particular context,
and was mindful to ensure that exaggerated claims were avoided in relation to the findings of
a relatively limited piece of research, as advised by Sieber (1992).
Piloting
Professionals
Fifteen practitioners who had contact with HE students with AS participated in discussions
about how best information could be gathered from staff for the purpose of generating
practical guidance, over the course of three meetings at which this was an agenda item.
Disability officers, DSA assessors, residential staff, and support tutors were included to
ensure a range of roles. Staff came from four universities, representing a cross section of the
sector. Five people, from three disciplines and three institutions, completed the subsequent
pilot questionnaire under timed conditions and modifications were made according to their
feedback. This consisted of rewriting four questions because they were unclear.
Participants agree that it was acceptable for the instrument to be used within the context of
staff development sessions provided that people had the option of not complying. Ethical
guidelines about confidentiality and openness about the purpose for which the information
would be used were discussed within the pilot and agreement was reached about the way
forward.
Students
When exploring a potential methodology for the study, a key consideration was that
participants with AS would be able to contribute in a way, which was not deemed by them to
be intrusive. Ethical guidelines required careful reflection in order to ensure that clarity of
purpose, informed consent, and respect for confidentiality were very clearly protected. This
was discussed individually with five pilot participants, two female and three male ranging in
age from nineteen to thirty-two.
Agreement was reached that descriptors like ‘a twenty year old male second year physics
undergraduate from Bishchester’ clearly had to be avoided as identification could be possible
42
from this level of detail. Terminology like ‘case’ was also shunned because of the opinion of
two students that the expression was demeaning. Views expressed by learners within this
context were congruent with the values of the researcher. Clearly people are not cases.
Discussion with the five students with AS, about the idea of the project, yielded the comment
from two (males) that ‘being used as a guinea pig’, or ‘being expected to do something extra
which was nothing to do with the course, for the benefit of another person’, was unacceptable,
while the other three said they ‘didn’t mind answering a few questions’.
The piloting of the structured interview used within the DSA assessment was limited to a
small sample of three students with AS, who found the questions acceptable. Fifteen students
with AS agreed to participate in the questioning as part of the DSA process and the
completion of two follow up questionnaires over the next two years. Participants were
enthusiastic in the first session but responses to requests for follow up meetings were limited
and the methodology had to be revised. The author anticipated gaining data from fifteen
students over two years, which would facilitate an ‘evolutionary view’ (Stake 1986) in which
changes over time could be carefully considered. The extent to which this outcome was
achieved was limited. Students who have AS possibly have little interest in participating in
something which is of no tangible personal benefit. This may apply to other students too, and
increasingly participation in research is rewarded, for example with a book token. It seems
appropriate to pay people for their time and experience and this will be considered in future
studies.
Outcome of Pilot Studies
The pilot sample was representative of the range of professional and student participants, and
the variety of institutions. Piloting resulted in slight changes to the presentation and content of
questions, but did not highlight the issue which arose about gaining student feedback.
Analysis of Data
Willig (2001) described a process, later used by Thompson (2004), whereby the responses of
interviewees were analysed and classified into various categories which could be interrogated
in order to plot emergent themes. Grounded Theory is the theoretical term used to identify
the method. This is defined by Coolican (2004: 241) as ‘Theory driving the analysis of
qualitative data in which patterns emerge from the data and are not imposed on them before
they are gathered’ The approach was adapted successfully by Thompson (2004) in a
qualitative research project in which couples, one of whom has AS, were interviewed, about
the effect of AS on their relationship. Valuable qualitative data was acquired and the process
was not judged to be intrusive by participants. The methodology of this study pre dates
Thompson (2004) but both pieces are based on similar ethical concerns, particularly around
not over burdening participants.
Analysis of qualitative data gathered from staff working with students with AS was also
deemed to be the most relevant approach, for which Willig’s (2001) methodology would also
be useful. The complexities of qualitative methods are well documented (Elliot 1992, House
1986, Kemis 1986, Walker 1986) and the process of interrogating the resulting information,
subject to a range of pitfalls (Day 1996, Oma and Stevens 1995) which are considered later .
Discussion with 10 Disability Officers and 5 DSA assessors, all working with learners with AS
in HE, yielded a consensus that qualitative data gathered via open ended questions would be
applicable, and more useful than ‘ticking boxes’. Because of the diverse nature of the issues
43
likely to arise, potential participants agreed that an approach similar to that adopted by Willig
(2001) would be most likely to provide the opportunity to share insights. There was a high
level of enthusiasm expressed, based on the feeling that the information yielded would have
some practical application. However, it was still necessary to be mindful of the reality that staff
are very busy and response rates from questionnaires are usually low (Bell 1993), particularly
when this involves using the post.
It is also pertinent to reiterate the caution that phenomenological analysis of responses which
ask people for their perceptions which are then interpreted by a researcher with ‘baggage,’
arising from a deep interest in the field, can be criticised for subjectivity. Added to this is the
reality that student's with AS are likely to have an idiosyncratic way of interpreting events, and
in particular, the motivation of others, possibly because of their potential difficulties with theory
of mind. Therefore, the phenomenological perspectives of respondents with AS is potentially
highly complex, and merits a further research project in itself. The author has a high degree
of awareness of these potential pitfalls and analysis of the data is undertaken with this in
mind.
Implementation
Pragmatically, in order to gather as much data as possible, the optional task of completing the
questionnaires was built into the end of staff development sessions, conducted by the
researcher. During the pilot five professionals completed the exercise to see how long it might
reasonably take. Fifteen minutes was allocated at the end of staff development sessions and
the author was on hand to answer any queries. Staff were (ethically) incentivised by the
promise of a copy of the practical guidelines resulting from the research.
The questionnaire was also posted via two relevant email lists (NADP and NNAC), which
facilitated a broader response. Additional student participants were searched tentatively via
asking staff via the NADP email list whether they were aware of anyone who was likely to be
willing. The strategy carried a health warning in the form of a caution only to contact people
who were deemed to be open to such an approach.
Limitations
The limitations of using questionnaires as a method to gather data are well documented. (Bell
1993, Coolican 1999/2004, Marshall 1997). The piloting of the instruments was expected to
iron out any ambiguous questions, and this was successful for the instrument used with staff.
The student pilot group was deemed in retrospect, to be too small for an effective pilot.
Potentially low response rates was addressed by manipulating the situation so that staff
completed the task for the author to take away, thus eliminating the likelihood of failure to do
so, despite good intentions. Using email communication was opportunistic and not envisaged
to yield many responses. The value of the strategy is discussed later.
Breadth
A cross section of UK universities, including Oxbridge, Russell Group, Red Brick, and non
traditional, Widening Participation institutions were required to provide balance. The author
had received invitations to provide staff development in organisations across the range
described, so it was possible to seek agreement for participation in the course of negotiating
the training session.
44
The possibility of gaining a wider sample via email communication to the NADP and NNAC
lists was tested during the course of the study, based on the assumption that people would
respond if they wished to do so. Using the email list method described earlier, responses
were also received from The Open University, which was an unexpected benefit, and also
highlighted a flaw in the study, in that this should have been considered in the first place.
Triangulation
A process of triangulation was planned, defined by Coolican (2004:586) as ‘comparison of at
least two views /explanations of the same thing(s)-events, behaviour, actions etc.’ It was
anticipated that this would be achieved by using the methodology to gain an understanding
from staff about the sort of support they have put in place and their feelings about how
effective this has been, and ascertaining the perspective of participating students in relation to
their perceptions of the efficacy of the support they have received. Further depth was
envisaged from the inclusion of responses from other significant people, identified by the
learner. In reality, the extent to which follow up data from students was available was limited.
Revisions to the methodology to address this were instigated and the results, and limitations
of the study, are discussed later. The use of email communication was built into the revised
methodology, with some success.
Dissemination
The method included a plan for making use of the information about staff and student
experiences to produce and disseminate good practice guidelines about working effectively
with learners with AS in HE. Participants had already been promised a copy of the arising
Good Practice Guidelines. E mail communication via the NADP list was employed in an
attempt to ascertained practitioners preferred journals and conferences (from a small sample
of four replies). Arrangements were made to publish the results in these forums, as well as on
the aforementioned list. The aim was to disseminate the findings beyond the participating
universities, in a way which would be useful to practitioners.
The study
Background
The author’s role as an Assessor for Disabled Student Allowance provided access to a cohort
of learners with AS and the Disability Officer (DO) from the each of the student’s universities.
The DSA assessment process requires discussion to take place with the DO, as well as the
learner, with a view to making the most appropriate recommendations in the report. This is
always carried out with the informed consent of the learner, and information is treated with
confidentiality as explicitly required by the DDA and Data Protection Act.
In the course of discussion with DO’s, a recurrent theme was that staff development about
how best to support people with AS in HE was very limited, and the author, having published
and presented on this theme several times, was asked often to provide some sort of
introductory session about AS in general terms. This was actioned in a way which did not
compromise the confidentiality of the student for whom the author was also the DSA
assessor, and ground rules about talking in general not specific terms were clear to
participants in the staff development events.
The research themes emerged from the opportunity to gain feedback from learners and staff
which could be used to improve staff training and ultimately, ideally, to enhance the quality of
the student experience.
45
Participating Students
Participating students were made aware of the research, and their contributions were
included, anonymously, if they agreed, so that covert inclusion of information was avoided.
(The author carried out over twenty five DSA assessments with students with AS and only the
comments of those who specifically agreed form part of the data. However the experience of
interacting with so many learners with AS, in this context has inevitably influenced the
phenomenology of the researcher and directly impacted on the recommendations for good
practice arising from the study).
Flaws and Revisions
Two flaws in the approach were immediately apparent and others emerged as the study
progressed.
Firstly, only learners accessing DSA and identifying themselves as having AS could
participate by definition as making contact with others who may not openly discuss their AS
would be impossible as well as unethical. The author has some experience of people
uncomfortable with a diagnosis of AS, for whom an approach by a researcher who mentioned
even a suspicion of the ‘A’ (autism) word would be negative. Consequently, only those who
disclosed AS could participate and no attempts were made to elicit information from others,
despite frequent comments from DO’s and others that they suspected that other students may
have AS.
Secondly, because people were completing questionnaires as part of a staff training activity,
the fact that they were there, indicated at least an interest in the area. Capturing information
from HE staff who may well encounter students with AS and had not accessed the
development session was not possible by this means.
The composition of staff attending the sessions was of interest as this was partly within the
control of the DO. No guidance was given by the author other than that the DO should invite
whoever they deemed to be appropriate. Analysis of the makeup of the sessions in terms of
job roles was built into the study, and reflected upon in terms of who was there, who wasn’t
and perhaps who should have been there.
The staff questionnaire took up to twenty minutes to complete so was arguably a bit intrusive,
although time was built into the staff development sessions. The same questionnaire was also
emailed to NADP list in order to provide the opportunity for self selecting professionals to
contribute information to the project. This would also facilitate the inclusion of students who
had had a wider experience of the process of assessment for Disabled Student Allowance,
i.e. had not been assessed by the author. Again, results from a self selecting sample only
could be gained in this way. Staff with no interest in disability would not be accessing the
NADP list. Further research involving a different audience would be interesting as a point of
comparison.
15 Learners with AS, representing a cross section of ages and both genders, were asked,
during the process of assessment for Disabled Student Allowance (DSA) needs assessment
whether they would be prepared to allow their DSA assessment to form the basis of an
anonymous report about their route to HE and identified support requirements. All agreed. In
addition, learners were asked to participate in an interview six months after the initial
assessment and at the end of the academic year, and consented to do so. The purpose of the
interview was defined as an opportunity for the students to evaluate their support and
46
comment on their own progress. Encouragement was provided by presenting the idea as an
opportunity to students in that feedback would be passed on to the DO with a view to making
modifications to initial support plans as appropriate, as a result of learner comments. Selling
any direct and tangible benefit to the student rather than appealing to a nebulous idea of
improving provision for others, in the long term, was considered to be the most appropriate
tactic.
With the permission of the students, DO’s were asked to participate in telephone interviews to
the same timescale as the students and for the same purpose. It was anticipated that
comparison between how DO’s felt things were going and the perception of the learners
themselves would prove interesting. This original plan was revised during the course of the
study because follow up from students was not as anticipated and ethical issues about talking
about the learners with a third party were considered therefore to be a concern.
Staff who received the questionnaire were asked to comment on any prior knowledge,
experience or training they had received before working with a learner with AS with a view to
evaluating where information had come from and perceptions of effectiveness of training and
preparedness of practitioners. Comments on first impressions of students with AS, and
changes to these views over time were elicited with a view to considering the possible impact
of prior knowledge and potential stereotyping. Staff were also asked to describe any training
needs they felt were unmet.
On the basis of early staff evaluations of their initial training requirements, and response to
the event they attended, staff development activities were modified and developed over the
course of the study. Alongside this, information provided by participants was used to form the
basis of a written set of Good Practice Guidelines.
In addition, information about gender, age, ethnicity, chosen courses of study, and routes into
HE of students with AS was gathered from staff. The method relied on memory to an extent
therefore does not claim to a high degree of reliability, but served as an impression. Given
that statistical evidence is not currently available in these areas; the results were designed to
be a starting point, nothing more.
47
Results
Results are presented in this chapter in summary form.
Reference
4.1.1
4.1.2
4.1.3
4.1.4
4.1.5
4.1.6
4.1.7
4.2.1
4.2.2
4.2.3
4.2.4
4.2.5
4.2.6
4.2.7
4.3.1
4.3.2
4.3.3
4.3.4
4.3.5
4.3.6
4.3.7
4.3.8
4.3.9
4.4.1
4.4.2
4.4.3
4.4.4
4.4.5
4.4.6
4.4.7
4.4.8
4.5.1
4.5.2
4.5.3
4.5.4
4.5.5
4.5.6
4.5.7
Title
Personnel Completing Questionnaires
Some Prior Knowledge of AS
Source of Knowledge
Prior Knowledge
Did Staff Feel Adequately Prepared
Source and Effectiveness of Prior AS Knowledge
Evaluation of Staff Development Delivered by the Author
Is AS Increasing
Age of Students
Student Gender
Student Ethnicity
Route Into HE
Student Outcome
Progression of Students
Course Distribution
Science-Arts Distribution-Male
Science-Arts Distribution-Female
Course Distribution Arts
Course Distribution-Science
Courses Male
Courses Female
Arts Courses-Gender Comparison
Science Courses-Gender Comparison
First Impressions
Changes Over Time
Details of First Impressions
Details of Changes Over Time
Student Challenges Described by Students, Mothers and Staff
Social Challenges
Mixed Challenges
Academic Challenges
What Sort of Support is Available in Your Institution?
Staff Views of Adequacy of Support
Effective Social Strategies
Effective Practical Strategies
Effective Academic Strategies
Living Arrangements
Outcomes-Living Arrangements
48
4.5.8
4.5.9
4.5.10
4.6.1
Ineffective Social Strategies
Ineffective Practical Strategies
Ineffective Academic Strategies
Summary
Questionnaires for Students
Four male and four female students provided information along with three mothers.
(From the original 15 students who agreed to participate in follow up, two women completed
the first questionnaire. The remaining 13 were contacted again with a shorter email
questionnaire and this yielded a further four responses from young male students, and one
from a mother. An additional two women and their mothers replied, contacted via the NADP
email list).
Information about a further 109 students was gained from staff. Within this, the sample size
of male students overall was far larger. Direct responses from eight learners as described
yielded a 50-50 gender split. Essentially, therefore this represents an unbalanced picture.
Responses from the eight students and three mothers are incorporated into tables which also
contain information from practitioners.
Questionnaires for Staff
179 questionnaires were completed by staff from the participating universities. 133 responses
were from the 17 universities whose staff members had attended either a one-day
awareness-raising event about AS (9) and its potential implications for the HE learner, or a
conference half day workshop (8). The Disability Advisor was responsible for inviting relevant
staff to attend and this was left open to include any personnel for whom the session may be
useful. 46 responses came from the email request to the NADP list.
The questionnaires yielded the following raw results (which will be analysed in the next
chapter)
49
Re
sid
ilit y
Se
rvi
ce
rs
taf
f
rs
rgy
ff ic
e
sS
sO
Cle
Co
un
cilo
tor
s
ffic
ers
ian
s
Tu
rs
O
ff
ut o
rs
Lib
rar
Ex
am
en
tia
l
Sta
sso
rs
xia
T
Ad
mi
n.
Ca
ree
Dy
sle
sse
Ad
mi
n.
DS
AA
rs
ic a
rts
Of
f ice
Ac
ad
em
Dis
ab
nc
e
st a
ff
ic s
cie
Su
pp
ort
Ac
ad
em
4.1.1
Roles of Personnel Completing Questionaire
Some staff may have duel roles
50
45
40
35
30
25
20
15
10
5
0
4.1.2
Some Prior Knowledge of AS
41%
no
59%
yes
50
us
p
S
oc
ia
R lD
ec igi iffi
te d B cu
l
d
C
/ U eh ties
om
a
nd vi
i s ou
D mu
c r
ys ni
le ca Ob los
xic tio s ed
/ D n P ess
ys ro ive
pr ble
ax m
ic s
lin
U
ks
nd
ia
gn A A A b
le
o u
B se tism nxio
eh d
A
av / A Li us
ca
io m nk
de
u b e
m L ral igu d
i c ac P o
bu ki ro us
t P ng ble
oo Em ms
r
p
V Beh ath
P ery a y
oo I vi
r E nd our
ye ivid
C
C ua
ov
o l
er C nta
ag o c
P
e mp t
ar
en H by lex
ts ar Me
ca d di
n to a
be H
D elp
iff
ic
ult
S
A
ite
d
30
25
20
15
10
5
Tr
ai
ge
ia
,C
nd
s
lM
ed
Fr
ie
ne
ra
16 15
ks
m
ily
oo
Fa
-B
60
20
8
ni
om
ng
In
m
(C
te
un
rn
o
ity
un
et
se
-J
llin
ou
g
rn
et
al
s
c.
-A
)
cc
ad
em
W
ic
or
k
C
on
S
ta
ta
ff
ct
D
s
ev
el
op
m
en
t
cc
re
d
In
te
rn
et
4.1.3
Source of Knowledge
70
58
50
40
30
15
7
11
10
7
7
10
6
5
8
5
4
7
3
3
2
4
0
4.1.4
Prior Knowledge
27
24
13
2
2
1
0
51
4.1.5
Did staff feel adequately prepared?
16%
16%
Yes
Not before event led by
author
9%
No
28%
Don’t know
No response
31%
4.1.6
Source and Effectiveness of Prior AS Knowledge
Relative Proportions of Staff
Discussion
Author's
with Staff /
Conference
Assessors
Internet
Nado /nnac
Email Lists
Part of
Course
Parents'
Advice
Book
NAS /
Students'
(Harpur / Assessment
CVs etc
Attwood)
Literature
negative feedback (%)
1.9
2.8
0.0
0.0
1.9
0.0
0.0
0.0
0.0
indifferent or no feedback (%)
0.0
0.0
4.7
0.0
1.9
0.9
0.9
0.0
0.9
effective (%)
15.1
14.2
9.4
8.5
1.9
2.8
1.9
1.9
0.9
positive feedback (%)
27.4
0.0
0.0
0.0
0.0
0.0
0.0
0.0
0.0
4.1.7
Source
52
4.2.0
Evaluation of staff development delivered by
author
2%
12%
0%
0%
Excellent
Good
Ok
Poor / Very poor
No response
86%
4.2.1
Is AS Increasing ?
15%
Yes
43%
Yes inc
Dyslexia/dyspraxia etc
No
22%
Don’t know
Did not respond
6%
14%
53
4.2.2
Age of Students
6%
0%
4%
10%
20 and below
21 - 25
26 - 30
31 - 35
55%
36 - 40
25%
41 - 45
4.2.3
Student Gender
Female
18%
Male
Female
Male
82%
54
4.2.4
Student Ethnicity
4%
White British
Other
96%
4.2.5
Route into HE
15%
A levels school or 6th
form
Other
25%
60%
Not known
55
4.2.6
Student outcome
3% 3%
8%
Ongoing
Passed
Failed
29%
57%
Transferred
Don’t Know
4.2.7
Progression of students
8%
Higher qualification
17%
42%
Unemployed or
underemployed
Took longer to complete
Employed as highly
successful top manager
33%
56
4.3.1
Course Distribution
26%
science
arts
74%
4.3.2
Science-Arts Distribution-Male
16%
science
arts
84%
57
4.3.3
Science- Art Distribution - Female
35%
science
arts
65%
4.3.4
CourseDistribution-Arts
10%
25%
10%
art/ design
history
BA unspecified
English/media
library/education
theatre/music
10%
24%
21%
58
4.3.5
Course Distribution Science
5%
7%
computer
science / other
32%
12%
maths
physics
law/business
12%
engineering
psychology /
sociology
18%
14%
4.3.6
Courses-Male
24
13
10
9
9
5
5
4
3
3
1
1
1
c
sc om
ie pu
nc te
e/ r
ot
he
m r
at
hs
p
la
h
w/ ys
bu ic
en sin s
gi e s
ne s
er
in
ps hist g
yc or
ho y
ar lo
m t/de gy
e
BA dia sig
n
un /me
sp di
ec a
ifie
lib d
ra
t h ry
ea
tre
30
25
20
15
10
5
0
59
2
1
theatre/music
1
library/education/c
ommunity
3
2
2
2
library
law/busines
s
1
3
2
1
theatre
music
2
history
3
English/media
5
science
art/design
4
art/design
6
5
4
3
2
1
0
5
BA unspecified
6
5
4
3
2
1
0
history
BA
unspecified
4.3.7
Courses-Female
1
4.3.8
Arts Courses
5
4
male
female
60
2
5
psychology /
sociology
1
9
engineering
3
9
law/busines
s
10
physics
13
maths
1
science /
other
30
25
20
15
10
5
0
computer
4.3.9
Science Courses
24
41
male
female
61
62
20
18
16
14
12
10
8
6
4
2
0
Details of First Impressions
In t
ell
i
g
e
nt
A Lika
w
are ble
o
En
fA
t
h
us S
i
a
stic
Av
Nic
o
idin Met
e
i
g
ey culou
e
c
on s
M
t
a
nn act
e
U
n
fat risms
h
o
ma
Ch ble
i
l
d
lik
C
o
A
mm
nx e
u
nic Cha ious
So atio lleng
np
cia
ing
r
l
l
o
y
ble
i
n
co
m ms
p
e te
O
b
Un
s e nt
u
s
s
s
ua
i
ve
l
/
s
cru
O
R
e
lian ffy d dd
Un t on p ress
aw
a
r
e
a
nts
r
e
Me
s
n
tal Diso ocial
l
h
r
g
ea
an y
lt
h
ind ised
i
c
a to
Clu rs
m
sy
4.4.1
4.4.2
Changes over time
33%
pos
neutral
59%
neg
8%
4.4.3
First Impressions
31%
pos
neutral
60%
neg
9%
63
64
8
7
6
5
4
3
2
1
0
Details of Changes Over Time
Ig
o
tu
s
ed
t
o
him
Le
D
s
e
s
Ca
cre
re
l
l
m
a
i
a
s
er
n
ec
to
h
n
all
pa
e
n
r
e
g
nts
i
n
gb
e
ha
v
iou
Le
r
s
si
B
s
e
o
tte
lte
r
d
ey
Me
e
n
c
tal
on
H
t
a
V
e
ct
e
a
ry
lth
i
An
n
p
d
rob
ivi
xi
e
l
d
e
t
u
y
ms
al
-D
e
i
n
p
cre
res
a
s
s
i
o
Did
ed
n-O
P
n
e
b
o
rso
se
ta
s
p
a
s
l
p
ion
ca
ly
in
re
t
e
p
llig
ro
V
b
e
e
le
r
nc
y
m
De
e
si
m
n
c
an
re
a
d
in
se
g
d
/C
In
h
a
a
lle
pp
n
r
o
g
p
ing
r
Un
i
ate
a
b
l
au
le
t
g
o
h
a
ter
cc
e
p
ta
d
vic
e
4.4.4
4.4.5
Student challenges described by students,
mothers and staff
700
652
600
500
400
male
300
241
female
214
200
100
76
31
30
0
social
mixed
academic
4.4.6
Social Challenges
male
female
Se
In l f h
e
t
C era lp
op ct sk
i n ion i lls
g
w -p
In i th eer
s
te
c
ra ha
ct
n
io ge
n
-s
Be
i n Soc taff
g
ia
So rea l li
fe
s
ci
al on
di ab
le
ffi
D cult
La ep ie
ck re s
of ssi
em on
Vu p a
t
La l ner hy
a
N ck
eg o bil it
f
y
M ativ ins
isu e
ig
nd Att ht
er itu
st de
an s
di
ng
s
N
oi
se
180 157
160
133 127
121
140
108
120
100
80
57 46
60
24 18
24 19
40
13 12 3
9
4 3 122 122 110 7 0 0 1
3
20
0
65
90
80
70
60
50
40
30
20
10
0
6
4
5
1
03
0 1
01
0 1
10
Problem
solving
4
Presentations
17
Group work
23
2
2
6
0
0
0
2 0
Worries About
Confidentiality
4
Decision
Making
Imaging new
situations
4
Distracted by
Obsessions
20
Cancelled
classes
44
21
Coping with
failure
25
Changing
focus
7
Making
excessive
Demands
30
Deadlines
3
Anxiety
51
Exam stress
10
Coping with
change
50
Expectations of
course
10
Accepting help
Organisation
60
Application/
Generalisation
4.4.7
Challenges - mixed
49
40
male
17
female
4.4.8
Challenges - academic
85
40
male
14
female
66
4.5.1
What sort of support is available in your institution?
Disability officer
Disability officer plus Academics
11%
3%
1%
2%
2%
27%
Disability Officer plus Academics plus
other staff (eg guidance, chaplain, plus
student mentors)
Disability Officer plus other staff
including residential services staff
Staff training
External agencies included in support
package
29%
Don’t know
25%
No response
4.5.2
Staff views on adequacy of support
16%
35%
5%
yes
yes, but poor take up
no
don't know
21%
no response
23%
67
4.5.3
Effective Social Strategies
45
39
40
35
30
25
20
15
10
5
4
3
Chaplain
Talk to peers with
student permission
0
Clubs & societies
4.5.4
Effective Practical Strategies
80
67
70
60
50
40
34
31
30
15
20
10
20
26
24
10
8
Ho
m
e
ut
rs
C
'W
ou
rs
ee
e
k
S
R
up
ef
po
ec
rt
to
ry
St
M
ar
ea
tW
ls
ee
k
Ti
Ea
m
rly
et
ab
le
C
He
le
ar
lp
R
ou
tin
es
ho
Fr
Th
m
R
oo
es
he
ro
ug
Tr
ip
s
ily
da
wi
th
Sa
m
e
or
m
e
ho
at
Li
ve
He
lp
wi
th
pa
re
nt
s
liv
in
g
0
68
4.5.5
Effective Academic Strategies
16
15
12
9
6
1
1
Analytical vocabulary
Separate exam room
4
Diary for deadlines etc.
Practice papers
Clear role in group work
Clarify course requirements
Make links explicit
Direct instruction
4
Dyslexia support & study skills
18
16
14
12
10
8
6
4
2
0
4.5.6
Living arrangements
5%
5%
With parents
5%
In community
In halls
47%
20%
Moved back to parents
home
OU home based
18%
Failed-unable to cope
away from parental home
69
4.5.7
Outcomes - Living Arrangements
3%
21%
Halls successful
Halls unsuccessful
8%
Home successful
Home unsuccessful
68%
4.5.8
Ineffective Social Strategies
18
16
14
12
10
8
6
4
2
0
16
12
4
Mentors
without
boundaries
Breach of
confidentiality
Expecting
empathy
3
3
Ignoring
loneliness
Assuming
social skills
70
4.5.9
Ineffective Practical Strategies
16
14
14
12
10
8
6
4
4
4
2
2
0
Assume self help
skills
Ignoring
Assume help from
residential staff's
other agencies
concerns
Ignoring
unreasonable
behaviour
4.5.10
Ineffective Academic Strategies
7
6
6
5
4
4
4
3
3
2
1
0
Vague /
discouraging
feedback
Indirect instruction
Unadapted group
work
Moving deadlines
71
4.6.1 Brief Summary
Reference Title
4.1.1
Personnel
Completing
Questionnaires
4.1.2
4.1.3
4.1.4
4.1.5
4.1.6
4.1.7
4.2.1
4.2.2
4.2.3
4.2.4
4.2.5
4.2.6
4.2.7
4.3.1
4.3.2
4.3.3
Some Prior
Knowledge of AS
Source of
Knowledge
Prior Knowledge
Did Staff Feel
Adequately
Prepared
Source and
Effectiveness of
Prior AS
Knowledge
Evaluation of Staff
Development by
Author
Is AS Increasing
Age of Students
Student Gender
Student Ethnicity
Route Into HE
Student Outcome
Progression of
Students
Course Distribution
Science-Arts
Distribution-Male
Science-Arts
Distribution-Female
4.3.4
Courses -Arts
4.3.5
Courses-Science
Summary
Academic Science staff are the largest group,
probably reflecting high numbers of students
with AS on science courses.
Dyslexia support staff attended and reported
instances of students with dyslexia apparently
manifesting signs of AS.
A small number of residential services
personnel attended despite the view that
students with AS often require assistance from
them.
59% the practitioners had some prior
knowledge.
Popular media and family contacts were the
most common source of knowledge.
Social difficulties /rigid behaviour were most
frequently cited issues by practitioners,16 f
commented on suspected undisclosed AS.
59% felt inadequately prepared.
The conference held by the author was the
most common source of information, and was
judged to be effective.
86% said this was excellent.
57% feel that AS (including undiagnosed AS14%) is increasing.
55% are below 20.
82% are male.
96% are white British.
60% arrived via the A Level route.
8% failed.
42% progressed to a higher qualification. 33%
had difficulty gaining appropriate employment.
74% science.
84% of male students were on science
courses.
35% of female students were on science
courses.
Art / design and history are preferred arts
courses.
Computers / maths are preferred science
72
4.3.6
Courses Male
4.3.7
Courses Female
4.3.8
Arts CoursesGender
Comparison
Science CoursesGender
Comparison
First Impressions
Changes Over
Time
Details of First
Impressions
4.3.9
4.4.1
4.4.2
4.4.3
4.4.4
4.4.5
4.4.6
4.4.7
4.4.8
4.5.1
4.5.2
4.5.3
4.5.4
4.5.5
4.5.6
4.5.7
4.5.8
courses.
Computer science is the most frequent choice
for males, followed by maths.
BA (unspecified) is the most frequent choice for
females, followed by art and design.
The preferred arts course for males is history,
for females BA, unspecified, and followed by
art / design.
The preferred science course for males is
computers, for females, science –other (two
choosing nutrition).
60% of staff first impressions were negative.
59% remained negative.
Anxiety, challenging behaviour and
communication problems were most frequently
noted.
Details of Changes Staff commented on getting used to students,
Over Time
but noted anxiety, depression and obsessive
behaviour increasing over time.
Student Challenges Social challenges were noted most frequently.
Students/ Mothers/
Staff Comments
Social Challenges
Interacting with peers and coping with change
were most frequently noted for both genders.
Self-help skills were problematic in males.
Mixed Challenges
Organisation, anxiety and coping with change
were most frequent for males and females.
Academic
Applying knowledge and accepting help was
Challenges
note most often for males and females.
Support Available. 54% of support included DO and others
Staff Views of
79% did not know whether support was
Adequacy of
adequate. Students making ‘excessive
Support
demands’ on service was described by some
practitioners.
Effective Social
Clubs and Societies were the most effective,
Strategies
and some students described back up from
clergy..
Effective Practical
Living at home with parents was the most
Strategies
effective.
Effective Academic Dyslexia-study skills were most effective.
Strategies
Living
52% lived with parents.
Arrangements
Outcomes-Living
3% of students who lived at home were
Arrangements
unsuccessful compared to 8% who lived in
halls.
Ineffective Social
Mentors without clear boundaries were most
Strategies
ineffective.
73
4.5.9
4.5.10
Ineffective Practical
Strategies
Ineffective
Academic
Strategies
Assuming self help skills was most ineffective.
Vague and discouraging feedback was most
ineffective.
4.2 Discussion –Evaluation of Methodology
How Has the Study Met its Aims?
The overall objective of evaluating strategies to enable learners with AS to succeed at
university, and to use the findings to generate good practice guidance for staff, has been
realised. A sizable amount of data was gathered and interrogated from a large sample of
diverse and representative practitioners. Additional insights from students and mothers
provided further stakeholder feedback. The information has been pulled together into
coherent Good Practice Guidelines, the initial evaluations of which are positive.
Initial evaluations of the guidelines have yielded positive feedback about the document from
62/62 staff who responded to an email request. 40 said the information was very helpful and
22 helpful. Comments included ‘a useful toolkit of ideas: straightforward presentation: a no
nonsense guide and I feel more confident than I did this morning’.
While the study has answered the majority of questions posed originally, in doing so it has
thrown up further areas for discussion. The significance of the findings, limitations of the
research and possible avenues for future investigation are considered in this chapter.
Methodological Limitations
Practitioners
Eliciting information from practitioners was straightforward in that there was a willingness to
complete questionnaires presented at training events and posted on the NADP list. Only one
respondent complained that the questionnaire was too long. The pilot study appeared to have
been successful in ironing out anomalous questions, but on reflection, it could be argued that
the nature of the instrument could prompt deficit model responses. Questions concentrated
on problems experienced by students with AS, and potential solutions. This is likely to skew
answers away from articulating success stories and describing particular strengths and
aptitudes. Future studies should perhaps include specific opportunities for professionals to
provide information about what students with AS can do well.
Students and Parents
3.3 includes some explanation of necessary methodological changes in the process of
gathering information from students under the heading ‘Flaws in The Study’.
In contrast, to the level of response from practitioners and despite the fact that agreement
was secured from the fifteen participating students that they would maintain contact with the
author over a two year period, very few actually did so in the way originally agreed. The
anticipated process for eliciting information from students had to be revised and less was
gathered via this route than was initially anticipated. Only four people returned the first
questionnaires and it was interesting to note that they were all women. Comparing female and
male responses was not possible because the shorter email questionnaire sent out in the
74
second round did not elicit as much detail. Aspects of gender comparison could be a subject
for a further study.
The original student questionnaire was probably piloted with too small a sample, and not by
both genders. Possibly partly as a result of this the initial response rate was poor. Very few
learners returned the completed protocol immediately, when it was sent six months after their
original DSA assessment as agreed, and at this point only female respondents contributed..
Therefore the data lacked any male perspective, at the initial stage, which was unfortunate as
men with AS outnumber women significantly.
On reflection, the method of piloting the instrument for students lacked rigour, and it was
unrealistic to expect the students to respond, by completing an activity which would take up to
twenty minutes, and required the skill of reflection and the organisation to use the postal
service, when there was not a clear and direct benefit to themselves.
A far briefer follow up e-mail questionnaire was tried two months after the first, and this
yielded a further four responses (from nine requests) from young male students. During the
course of the study, it emerged that email communication between learners with AS and their
supporters had been effective in some instances, therefore this was adopted as a strategy to
attempt to elicited useful information.
Consideration was given to attempting to contact students via web sites set up by people with
AS as a means of communicating with each other (for example ‘Asperger’s United’ 2005),
which includes an area for people to chat about their college and university experiences). This
was ruled out because of the potential ethical dilemma of a non disabled person intruding into
a space set up by disabled people and introducing an agenda other than that which was
originally intended.
The methodology, gave students the opportunity to name other people who could be
contacted to provide additional information, and permission was received to contact three
mothers via phone. Each corroborated the view expressed frequently by practitioners, and
students, that a high level of parental backup is often a crucial feature of support. Many either
live with parents, have frequent contact, or move back at times of stress. Few access
intervention from statutory agencies such as Social Services, or voluntary bodies, like the
NAS. Being dismissive of the potential benefits of family backup would clearly be a mistake,
and practitioners are charged with the responsibility of finding the right balance and ensuring
that the students are empowered to articulate their choices and feelings. Further research to
address a range of issues around parental roles in supporting students with AS is indicated.
Balancing confidentiality, adult status, differing perceptions between parent and learner and a
range of other factors requires careful consideration. An alternative study may focus on
parental adjustment to their son or daughter with AS moving on. Although beyond the scope
of this research, the author acknowledges that there is precious little available to help parents
to promote independence and particularly to adjust their own expectations and behaviour as
their child becomes an adult. The views of older students and those who do not necessarily
have parental backup also merit future consideration.
Because of the small sample size, the author integrated commentary by mothers with that of
professionals. (The views of fathers are absent in this study, and this is another potential area
for investigation). Student ideas were also incorporated in the same way. Careful
consideration was given to whether anything of practical use could be gained by making this
75
information stand alone. In the judgement of the author, a high level of congruence between
respondents from different groups was apparent so the answer would appear to be no. It is
possible that a larger student /parent sample size would have thrown up different findings,
and this may be interrogated further in future. As with any analysis using Grounded Theory, it
may also be that different themes would emerge if the data were to be analysed by a
researcher with a different phenomenological perspective.
A slight concern remains that mothers and students may feel that their ideas have been
buried amongst those of a much larger group is acknowledged and a covering letter will
explain the author’s reasons.
The email request sent to the NADP list, asking D O’s to pass on the original questionnaire to
students with AS if they felt this to be appropriate was not effective. Again, this method could
be criticised for lack of rigour as it is impossible to ascertain how many questionnaires were
forwarded via this route, therefore the response rate cannot be measured.
It was felt to be insensitive to push students who agreed to participate and then did not do so,
beyond the first questionnaire and email, or to contact their parents or disability officers to
gain further information without explicit permission. The author felt that it would be intrusive to
contact any of the original students by phone, particularly given that two students originally
approached had articulated an objection to being the subject of a research study. People who
agreed originally within the context of the DSA assessment may have felt pressured when the
follow up contact was made. It was not the intention of the author to create additional stress,
and people are entitled to change their minds. Students could also choose to make contact
themselves if they wished to do so, and four did send regular e-mails asking for advice. A
response of ‘very interesting, do you mind if I just use this in my research’ did not feel right.
In total therefore, it was possible to gather first hand follow up data from eight students, half
from each gender, and three mothers also offered additional commentary. Although indirect
information, from professionals was available about the progress of others, caution is
expressed about assuming a match between the perceptions of a third party and that of the
student themselves. Because responses are anonymous, for ethical reasons, this raises a
further limitation, as students would not have the opportunity to reply or challenge comments
made about them by other people. Triangulation planned for in the original methodology was
not carried out in the same way in subsequent revisions.
Generalised conclusions are presented with a health warning, which emphasises the
requirement to think of every learner as an individual. Although the study has the potential to
improve support for learners with AS in HE, it must be remembered that, the student voice is
muffled. Therefore, all the research has really achieved is to assimilate and disseminate the
opinions of staff who have worked with learners with AS in the HE context. Provided this is
understood, the author has no reservations about the information being in the public domain
as long as it facilitates critical reflection rather than knee jerk reactions. The least desirable
outcome would be for the work to perpetuate stereotyping.
In summary, the quantity of student responses was smaller than anticipated. The
methodology was not derived to achieve a balance between feedback from learners and
professionals, but with eight questionnaires from the former and 179 from the latter, the slant
is obvious. A way forward, which may address this in future research, may be to ask students
to evaluate the Good Practice Guidelines from their perspectives.
76
Data Analysis
Employing Grounded Theory was far more difficult than originally anticipated, despite care
having been taken to articulate the purpose of the study clearly.
5.1 General Conclusions
The overall objective of making use of the information generated by this study in order to
inform and assist HE staff to be more effective when supporting learners with AS has been
realised.
The methodology of the study has been thoroughly evaluated, and discussion has taken
place about possible replication and future modifications. Limitations, as well as potential
benefits are acknowledged.
In Relation to Specific Aims
Quantification of numbers, routes into HE, gender, age, ethnicity and chosen course of study
of students with AS in the 17 participating universities has been achieved. Strategies to
enable learners with AS have been interrogated and good and bad practice has been
identified.
Levels of understanding and access to knowledge and training about AS in the context of HE,
by a variety of staff, has been analysed and gaps have been highlighted. Strategies to
address deficits in staff development in this area have been considered.
The resulting Good Practice Guidelines are presented within the body of the research as a
significant outcome and original contribution to knowledge in the field. Initial evaluative
comments and potential avenues for further development are discussed.
In Relation to the Hypothesis and Sub Hypotheses
The hypothesis that HE learners with AS who receive inadequate or inappropriate support are
less likely to do well than those who have access to adequate backup has been interrogated.
Findings have, as expected, given a clear indication that effective support strategies facilitate
student achievement, and ineffectual interventions mitigate against success. More
importantly, the study has made a contribution to defining factors which contribute to the
provision of effective services, in a way which will be of practical benefit.
The sub hypotheses identified in 3.1 have yielded the following findings which have
contributed to the intended outcome of the studyThe number of students with AS is apparently on the increase, according to information
provided by participating professionals. Sources of more objective information, for example,
statistics about disabled students collected by HESA, are not complete. The extent to which
information provided by HE staff for this study is reliable merits further discussion. An
increase in media attention has raised people’s awareness of the condition. Comments made
by practitioners about students displaying characteristics of, AS but having no formal
diagnosis, are pertinent.
77
Students with AS predominantly enter HE from traditional A level Sixth Form routes, rather
than non traditional avenues (according to the findings of this study, the vast majority being
white males in their late teens or early twenties).
The majority of students with AS in the study are in science based courses. Computer
science is the most popular choice, particularly for male students. The small number of
women with AS in the study tended to be concentrated in arts based provision.
Support for learners with HE is not consistently effective, but it is possible to identify common
elements of practice which is likely to be enabling for the vast majority of students with AS.
Frequently areas of difficulty relate to social interaction, independent living skills, and
academic and everyday problem solving. The ability to apply knowledge, or to focus on the
course requirements rather than concentrating on specific areas of interest, was often
underdeveloped.
University staff do not feel adequately prepared to deliver effective support to HE learners
with AS. Often practitioners gained information about the condition from informal sources,
such as the popular media and family and community contacts, rather than by academic
engagement. It is unusual for people to have received any training designed to enable them
to work effectively with HE learners with AS prior to contact. The provision of bespoke staff
development opportunities of direct relevance to the university context is extremely limited.
Evaluations of such training delivered by the author were overwhelmingly positive and the
feeling that this should have been available prior to contact with students with AS was often
expressed.
The Good Practice Guidelines, which follow in Chapter 6, provide a summary of the key
points. Essentially, quite simple strategies, which are reliable, designed to enable the
development of coping mechanisms and not dependant on one person for their success,
proved to be the most effective.
For learners either exhibiting signs of AS but without a formal diagnosis and for those known
to have AS but who have chosen not to avail themselves of additional support, the difficulty of
how to intervene effectively is compounded. Delicacy is required in order to offer assistance
without making people feel insulted or stigmatised. This is addressed within the Good
Practice Guidelines. Assistance with the development of study skills and organisational
strategies found helpful by dyslexic students were often useful for learners with AS. These
opportunities can be made available without a formal diagnosis of AS.
Although there is a general acknowledgement from participants that all staff involved with the
student would benefit from context specific training, it was highly unusual for residential
services staff to be invited to the sessions delivered by the author, which were marketed as
being open to all staff. This was despite the evidence that difficulties encountered around
living away from home are often experienced by learners with AS, and residential services
staff are best placed to support in this context. Science lecturers were well represented,
apparently reflecting their need to know more because of current engagement with students
who have AS.
Support from other agencies, outside the university, was very rarely used, but backup from
parents was often found to be an integral component of enabling students with AS to
succeed. Several instances of learners choosing to study from the family home, or returning
78
to live there, having found halls of residence too stressful, are noted. This is reflected in the
Good Practice Guidelines.
The National Autistic Society is a good source of information about available backup in the
locality of the university. Staff did not have a high level of awareness of the availability of NAS
services, or other possibilities beyond the university.
Clubs and Societies within the institution offered opportunities for social interaction, and the
university chaplain provided social contact for several people. Assistance to access such
facilities was often required, especially in the early stages. Local organisations and churches
beyond the university could also provide social activities.
79
6. REAL Services to Assist University Students who have Asperger Syndrome to
Succeed at University –Good Practice Guidelines for Staff
Introduction
The most important outcome of this research project was the development of the good
practice guidelines presented here.
REAL stands for realistic, empathic, anticipatory and logical. When services are REAL
students who have AS are more likely to succeed at university.
A shorter version of these guidelines have already been published in the journal ‘Good Autism
Practice’ (Martin 2007) and feedback has been very positive. This revision is punctuated with
comments directly from student participants in the ASPECT survey (Beardon and Edmonds
2007) and readers are urged to read the full ASPECT report, and invited to reproduce and
share the information presented here. Bespoke staff development sessions can be arranged,
based on this material, and including input from students who have AS. (Contact
n.martin@shu.ac.uk).
It is likely that university staff will meet students with AS, particularly in science based courses
including ICT, where numbers are higher (the majority of students in this study were young
male science undergraduates with science A levels).
AS has received a lot of media attention and staff often feel nervous and ill equipped to deal
with someone who may, in their imagination, conform to the Rain Man stereotype. The reality
is somewhat different and people have found that students cope well if adequately supported.
It is also highly likely that many learners who have AS manage without accessing services for
disabled students.
'I found university no problem. I got no additional support but in a huge institution no one
cares if you're a bit strange' (Beardon and Edmonds2007:155)
From insights about students who have made use of services it is clear that reliability is the
key to successful backup. Achievement is most likely if systems can be in place from before
the start of the course, and organised in such a way that parameters are communicated
explicitly and sufficient flexibility is planned in to avoid over reliance on one person.
Information about HE services needs to be made available, to students and their supporters,
as part of transitional planning, as far in advance as possible. Bringing students into university
with parents, teachers and others over a year before the start of a course, in order to explain
the intricacies of the DSA, is good practice. Aspiration raising activity in school may be
important for pupils (and parents) who have not previously considered HE as an option.
'I need help with all the bloody forms' (Beardon and Edmonds 2007:150)
Developing a clear timetable from the start, and an understanding that the student will be
notified in advance (via a suitable means of communication) if changes are about to occur is
likely to develop a sense of security which will result in diminishing anxiety levels. Text or
intranet is often the best method, and it is a good idea to ask the student what they prefer.
'Individualised communication agreement between tutor and myself. eg prefer email to phone'
(Beardon and Edmonds 2007 :156)
80
A holistic view which understands that academic endeavour is only part of university life is
essential, so planning to enable the learner with AS to manage practically and socially may be
required. Therefore staff involved in these aspects of the HE experience need to understand
AS. In a culture where staff and students value diversity, inclusion is more likely to become a
reality.
'Help with life skills, timetabling and organisation' (Beardon and Edmonds 2007:156)
Individuality needs to run as a recurring theme. Not everyone is comfortable with their
diagnosis, and the effects of the condition vary significantly, and interact with other factors
such as personality, ability and life experience. Post diagnostic support is uncommon and
individuals without a clinical diagnosis can experience particular difficulties around accessing
services. Support provision which is not identified with disability services may be more
palatable to some students who have AS but do not identify as a disabled person.
'Often all that is needed is verbal and written guidance-no special treatment'
(Beardon and Edmonds 2007:156)
Family backup plays a crucial role for many learners. Studying from home is not uncommon.
University staff have to balance the understanding that a high level of parental involvement is
likely, with respect for the feelings, wishes and aspirations of the student who may be trying to
develop a greater degree of independence. Negotiating university social life while living with
parents may require careful thought.
'If I didn't have a mother willing to fight my cause, I wouldn't be where I am now'.
(Beardon and Edmonds 2007:177)
The author has recently undertaken an in depth study of support available for learners with
AS in higher education with a view to creating staff development opportunities designed to
extend good practice.
The following guidelines describe some of the findings to date. It is based on responses from
over 170 HE staff that have direct contact with students who have AS in 17 universities. In
addition 8 students with AS (and the mothers of 3) have provided information about the sort of
support they feel would be helpful.
Background
AS is a form of autism associated with people of at least average intelligence, but is not
necessarily synonymous with 'able autism'. Individuals differ markedly from each other. It is
not necessary to be a genius to have AS, but a student with the condition may be very
dedicated and hard working. Autism is probably not the first thing that would come to mind on
first meeting. An individual may speak well and appear very able in certain areas. They may
be hiding a high level of anxiety, trying to appear to be in control and doing their best to 'fit in'.
Difficulties with communication, social interaction, coping with change and employing
flexibility of imagination are core characteristics of AS, which may be exhibited to a greater or
lesser degree. These may not be immediately obvious, but may become more apparent when
the student is stressed. Depression and anxiety are common, often as a result of
environmental factors such as feeling left out or worried about lack of predictability. The
81
student with AS may find it hard to see things from another person’s point of view. Other
people may not understand the world view of someone with AS easily.
'I found it extremely hard to cope with any changes..the stress of being a student..writing
essays… presentations… managing time…interacting with students and staff'
(Beardon and Edmonds 2007:159).
It is not unusual for the student to be very sensitive to the sensory environment, focus on
detail, finding it hard to see the bigger picture, and to experience organisational difficulties. An
environment which is not sensitive to these characteristics can create a great deal of stress.
'…getting lost in detail, researching too much..not knowing how deep to go..'
(Beardon and Edmonds 2007:165) ..'could not cope with the crowds' (167)
AS is not rare and diagnosis is not always unambiguous and does not exclusively occur in
childhood. It is likely that HE staff will come across people for whom AS has been recently
identified, and those who received a diagnosis as a child. Individuals react emotionally to the
label in varying ways and with various degrees of comprehension, and reactions may well
change over time. Some students are uncomfortable with the idea that they are perceived as
different. Post diagnostic support is rare. Free of charge diagnosis in adulthood is rarer.
'A diagnosis would have helped so I didn't feel my lack of social understanding was some
deficit of mine-just a difference' (Beardon and Edmonds 2007:171)
Males are diagnosed with AS more often than females. Science based courses (including
computer science) tend to attract more people with AS. Most learners in the study arrived at
university via the A level route. Increasingly students with AS are accessing HE, so staff can
expect to encounter affected students. Participants also commented that they suspected
some students had AS without a formal diagnosis having been shared. With increased
knowledge and media attention this is likely to occur. Amateur diagnosis should be avoided. A
student may have chosen not to disclose. The amateur clinician may be misreading the signs.
Self esteem could be damaged.
The Disability Discrimination Act part 4 (2002) is very clear that ‘informed consent’ must be
obtained from a disabled student before any information about them can be shared with a
third party. This is absolutely non negotiable. Therefore, any idea about discussing the
requirements or behaviours of a student with AS with their peers, parents, or other staff or
agencies, without their express permission can not be indulged.
It is possible to be supportive without necessarily labelling an individual.
While some students will talk about their difficulties, others may be less willing, or may not
perceive themselves as having a disability. The difference versus disability debate is
gathering pace. Sensitivity to the individual’s feelings is essential as it is possible to cause
stress by offering assistance, which is viewed as unnecessary or intrusive.
It is necessary to be open to the possibility that additional conditions, including dyslexia and
epilepsy can be present, and problems with depression, loneliness, social exclusion and
anxiety may occur chronically or intermittently.
82
'I felt isolated at university, suffered serious depression and quit' (Beardon and Edmonds
2007:160) ..'I need a mentor and possibly a buddy.. to help with social isolation '(156)
Seeing the individual rather than the syndrome is essential, therefore advice given here
comes with a health warning. No two people with AS are the same.
Staff are required under DDA Part 4 to make reasonable adjustments to minimise barriers.
Adjustments may need to be subtle and staff will need to be sensitively aware of ways in
which the environment can be disabling. Attitudinal barriers can limit opportunities.
People with AS can have high level of ability, application and dedication. Aspects of
behaviour associated with the condition can be advantageous, and a deficit model approach
is to be avoided. Sometimes people with AS are strong visual learners. Finding out about
individual learner style is helpful.
Challenges
Feedback from staff, and students with AS, suggests that learners with AS are likely to
experience their individual version of the sort of challenges described below, to some degree,
at some stages. It is important to note again that some students with AS are not very
accepting of the picture of themselves that the following descriptor paints. The role of HE staff
is to empower learners, not to classify them in a way which may be disabling, so caution in
interpretation is urged.
Individuals change over time and some students present with a diagnosis of AS which was
made in childhood and a history of having exceeded expectation. Parental perceptions may
be coloured by their son or daughter’s early experience and their own anxieties about the
ability of someone who seemed very much more disabled in their earlier years, to cope
without the high degree of backup they have received at home. Lack of knowledge about the
support services available in modern universities could also cloud parental confidence, so
information needs to be made available well in advance.
Parental support is absolutely critical to many people with AS and it is important for HE staff
not to underestimate this. Some students with AS live at home, or go back to spend time with
their family periodically to alleviate stress. HE staff have to find a balance between helpful
interaction with parents, not breeching confidentiality and not unconditionally accepting the
world view and expectations of a third party, rather than that held by the individual concerned.
Social Interaction
One of the main disadvantage most students with AS experience in the university context is
difficulty with social interactions. They may have no friends, or be vulnerable to exploitation by
peers they perceive to be friends (e.g. who constantly expect drinks bought for them without
reciprocating). Other students may perceive them as ‘odd’ in some ways and they may have
problems with ‘fitting in’. Body language and eye contact can appear awkward.
'Bullying,difficulty fitting in as very shy. Didn't know what to say to make people like me'.
(Beardon and Edmonds 2007:166)
Empathising with others is something a student with AS can find extremely hard so they may
not realise how their behaviour is perceived, (for example, when they are boring people by
going on about some personal fascination without realising that other people are not
necessarily interested).
83
'…I didn't understand that the things I said / did were weird to other people'
(Beardon and Edmonds 2007:160)
Peers may ignore, isolate, include, tolerate, like or admire an unusual character, particularly
someone with an interesting take on life or an area of impressive ability. Media stereotypes of
AS may impact positively or negatively on the way other students behave. Increasingly,
people with AS are telling their own stories which contradict media stereotypes and may be
helpful over time.
Professionals may also behave in a way which is not necessarily helpful, often through lack of
understanding. Sound inclusive practice which involves valuing and embracing diversity may
be helped along via disability equality legislation and training. Students who have AS may
well be able to make a positive contribution to disability equality training. Routinely listening to
students is a very good starting point.
'…The question is not 'how could I have been better supported', the real question is 'what are
we going to do to make education accessible to all' (Beardon and Edmonds 2007:172)
The ability of people to empathise with those with AS is rarely discussed, as literature focuses
almost exclusively on lack of empathy as an autistic trait. Encouraging values of tolerance
and acceptance and the development of empathy in other students and staff is something
which merits consideration. It is possible to develop a climate which fosters mutual support
(without the need to label anybody).
Bullying is something which some students with AS described as lessening after their school
days were over. Although this is very positive, it is important for staff to remain vigilant to the
possibility, in a low key-non-intrusive way, and aware of the impact of childhood bullying on
adult self esteem. Cyber bullying is a modern variant.
Communication
Communication may be more confused than it first appears. Even if the student has
superficially good language, they may have difficulty with some aspects of comprehension
and a tendency to take things literally. Expressions like ‘Take a leaf out of his book’ for
example, can be problematic.
Language required for articulating feelings may be limited and the student may not think to
ask for help. (On the other hand, s/he may make extraordinary demands on the support
service because of an inability to work out what is reasonable. ‘Call in to Student Services any
time’ for example could result in daily visits).
Clear, straightforward, unambiguous language is essential to avoid confusion. Jokes and
sarcasm may be misunderstood (although many people with AS have a quirky sense of
humour). Understanding of instructions for exam and assignment questions should be
checked so that help can be given before time is wasted.
'…tutors inability to explain briefs to me effectively' (Beardon and Edmonds 2007:162)
In class, the student may need to be brought into group discussions by being asked direct
questions and /or having clear guidelines during discussion sessions. Problems may occur
around sticking to the point if they have become fixated with an apparently minor detail for
84
example. Providing a reminder of the topic and asking the student specific questions can help
to bring them back on task. Social conventions, such as not dominating discussions, shouting
out or interrupting, may need reinforcing in some instances. The need to emphasise the
message that the language used in the pub is not necessarily appropriate in the lecture
theatre may also arise. Assistance to join in effectively with group work may be helpful.
Ensuring everyone has a clear role, and giving marks for team work could be beneficial.
If it is necessary to tell a person with AS something about their behaviour directly, obviously,
this should not be done in front of peers because of the potential for humiliation. A popular
myth prevails that people with AS do not experience embarrassment. This is usually not the
case. If someone is doing their best to fit in, and their failings are pointed out publicly, this is
very unlikely to be helpful.
Occasional reports of other students complaining about the person with AS, for example
shouting out in class were evident in this study. Reassurance from staff that this will be
discussed with the student confidentially is usually adequate. It would be wrong to share the
diagnosis with peers. On the other hand, if the affected student has negotiated a way they
would like to share personal information with others; this could be helpful, if handled well.
Some people chose to generate a short statement about themselves, during the DSA
process, which they could choose to give out – or not. It is important that the decision to share
or not to share is made by the student, and that deficit model language is avoided.
'…Staff could be taught what AS is and it is not that I am just bad tempered'
( Beardon and Edmonds 2007:155)
Areas of Intense Interest, a potential strength
The student may have, or develop, areas of intense interest (and this can be the only topic of
conversation). If their fascination is directly related to their course it may be very motivating.
Alternatively, it could be a barrier to learning. If, for example, a student does not see the point
of completing a particular aspect of a course, which is required, and spends disproportionate
time on a more interesting element, the resulting potential for failure may well need to be
made explicit.
Occasionally, learners described becoming intensely interested in another person. Sensitivity
to this possibility may be required when organising support staff. Talking to the student about
this directly to help them find a way forward, rather than euphemistically would be necessary
if this did arise. Boundaries sometimes require explanation. Roles of staff offering services
(for example mentoring) may need to be made explicit.
If a student lacks motivation to complete aspects of the course they perceive to be dull, it is
possible to point out that it is not necessary to enjoy or feel particularly stimulated by every
learning experience. It is however essential that work in the given area is completed to a
specified standard in order to achieve the desired qualification, put simply ‘you don’t have to
like it, but if you don’t do it, you will fail’.
Application of knowledge can create challenges which can be addressed in study skills
sessions. Analysis, comparison, interpretation, synthesising information from a range of
sources, require a range of skills including the ability to generalise and empathise. Some
students who have AS are strong visual learners so diagrams can be helpful. Help may be
85
required to facilitate ‘seeing the bigger picture’, without getting bogged down in detail, and
working out connections between areas of learning.
Some are highly successful at GCSE level and then struggle when expected to work more
analytically. Social Science subjects attract fewer students with AS than do the areas of
physical sciences, mathematics, ICT and engineering-subjects which de-emphasise the social
context of learning to an extent.
As an individual progresses in his or her academic career, opportunities for narrow
specialisation will increase and the products of in depth investigation will be increasingly
valued. (Wittgenstein, Newton and Einstein are sometimes quoted as examples of AS
associated with genius and achievement).
Anecdotal evidence suggests that some people with AS have a very unusual learner style, it
may be impossible for HE staff to understand the processes behind the learning in every
instance. Requests to ‘show all the working out’ may not always be useful. A mother talked
about ‘all of a sudden learners’, meaning that skills appeared without obviously developing
over time.
Strong visual perception is sometimes evident and it may be possible to help the student to
make use of visual strategies if this is the preferred mode.
Multi sensory approaches and activities to facilitate personal organisation can be helpful.
Some students reported making use of the sort of study skills sessions popular with some
dyslexic people.
'Highly structured work suits me best' (Beardon and Edmonds 2007;158
Affect
Low self-esteem, depression and high levels of anxiety are common states of mind,
particularly in young adults with AS. Moving away from home may well exacerbate this. Social
isolation is hard to accept for a person who may have a strong desire for friendship and
relationships. (Conversely, individuals with 'able autism', rather than AS may be more content
with their own company and less troubled by the need for interaction).Worries may arise from
previous experiences of bullying.
Students may find it very hard to break into any sort of social scene at university. Structured
opportunities, such as attending church or regular aerobics classes, may be more successful,
particularly if they are timetabled in and therefore become part of the routine. Offering a wide
range of social opportunities to appeal to a variety of tastes is helpful. Not everyone likes
nightclubs.
The minefield that is Fresher’s week requires careful navigation and support (from a mentor)
to join clubs and societies can be very helpful. Regular recreational opportunities can provide
much needed structure to a week which can otherwise contain a lot of empty time.
E-mail can be quite an important lifeline to assist with alleviating anxiety and feelings of
isolation. A system to ensure that reliable responses to email communications are possible
will be necessary. If a student is struggling with communicating with a tutor, help to construct
86
a useful e mail may be very beneficial. Internet friends (eg Facebook contacts) can reduce
loneliness too.
'…Some kind of mentor who can help me integrate socially a bit more'
(Beardon and Edmonds 2007:154)
Adherence to the Familiar
Unpredictable changes in planned activity can result in confusion and upset and this may give
rise to internalised anxiety or behaviour which others find challenging, which could in turn
increase isolation from peers. Anticipated stressful events may have similar consequences.
Advising a student of a change in routine can be as simple as putting a post it note on a door
to inform that a lesson has been moved. Without this sort of thoughtfulness, the learner may
find themselves at a loss to know what to do. Anything more than this may be unnecessary
and leave the student feeling overprotected or singled out in an embarrassing way. If the
intranet is used reliably for all students for this purpose, problems are less likely to arise.
Sometimes changes which appear minor to others have more significance for a person with
AS. It is helpful for practitioners and, as far as possible, peers, to accept this, and develop a
level of thoughtfulness accordingly.
…'Structure and routine being explained' (Beardon and Edmonds 2007:155)
Behaviour which others find challenging
Behaviour others find difficult may arise because of the student having limited understanding
of social norms. (E.g. that it is not OK to take a motorbike to pieces in the middle of a
communal living space). Problems may occur because of lack of social experience and
limited ability to understand other people’s motivation. Straightforward explanation about why
it is not acceptable, for example, to use a shared front room as a mechanics workshop is far
more likely to be understood and result in behavioural change, than more subtle attempts to
get the message across through sarcastic remarks or despairing looks.
The reactions of others can exacerbate difficulties, and negative responses often arise
through the inability of a third party to empathise with an individual with AS, or a tendency to
make assumptions about behaviour, for example being the result of rudeness.
Sometimes ‘difficult behaviour’ is perceived as such by other people because of their lack of
understanding, for example of a requirement to carry out some low-key ritualised activity. If a
person with AS insists on lining up their pens before starting work for example, then it could
be argued that it is unreasonable for someone else to define this as problematic. In other
words-why shouldn’t they do this, especially if it has a calming effect?
Increasingly universities emphasise the importance of valuing diversity. If an individual
behaves in an unusual way, classifying the behaviour as problematic does not sit comfortably
alongside valuing diversity. If a particular unusual behaviour has no negative effects on the
student with AS or on others then it is reasonable to expect people not to interfere.
Sensory Overload
Heightened sensory perception may make some ordinary situations, like using the refectory,
seem unbearably stimulating. This in itself could result in ritualistic activity in an attempt to
87
gain some environmental control, and the behaviour could enhance the impression that the
individual with AS is 'odd' in some way.
Avoidance of the refectory can be problematic, especially if the student is not used to
cooking, and therefore not likely to be eating properly. Help to work out where to sit in this sort
of environment may well be necessary. One person described their need to sit in a corner so
that sensory stimulus was limited because no one could walk behind them.
Students also described the library or computer room as over stimulating in some instances.
For DSA Assessors this information could add weight to a justification for a personal
computer or book allowance.
'Someone could help me enrol because it will be busy and there will be too many people
there' (Beardon and Edmonds 2007:151)
Sympathetic Environment
With a clear structure, an understanding of where to turn to for support and a sympathetic
environment, students with AS can do very well.
Examples of students with AS who have been successful indicate that high quality support
early on can enable the learner to cope with less intervention later, when everything is
becoming more familiar.
On the other hand, people have floundered because seemingly trivial problems, which are
often social and practical rather than academic, have become insurmountable to them.
It is important to note that help with coping with the day to day practicalities of life, such as
shopping, cooking, eating etc, can be an essential requirement, so consideration to the sort of
backup needed in halls of residence, for example, is vital.
'Needed lots of support to look after myself, provided by my family as I lived at home'
Beardon and Edmonds2007:161)
An understanding and acceptance of the nature of the condition will help service providers to
negotiate appropriate support with the individual, and some quite simple strategies can make
an enormous difference.
It is essential, however, to focus on the individual and remember that students with AS are not
all the same. It is not enough to simply apply the guidance suggested here, without thinking
carefully about the person in question and the context in which they operate.
Overtly over supporting someone can disempower and disable. Offering unobtrusive and
reliable backup is a more sensitive response.
'Realise that autism is ongoing and not everyone with AS presents in the same way. Be
consistent with support and not drop off when things are going well'
(Beardon and Edmonds 2007; 156)
88
Considerations
The following information will be useful to a range of staff including DSA assessors, disability
officers, widening participation practitioners, academics, general support service providers
and others.
Pre-Entry
'…someone to help with the process of applying, filling in forms, sorting money etc.'
(Beardon and Edmonds 2007:151)
Does the student have access to high quality straightforward information to assist them to
choose a university and a course? Is help available with the UCAS process, attending Open
Days, accessing DSA etc? Are the people supporting the student knowledgeable about HE
and equipped to help and encourage? Are suitable strategies put in place to assist with
choice making and to cope with the stress of conditional offers?
How does the institution market itself? Is it known for having an understanding of the
potential requirements of a person with AS? If so, is the information about the sort of backup
which can be offered truthful? Organisations which over- promise and under- deliver are not
effective in supporting students with AS who rely heavily on people being reliable.
Before entry to HE, is some sort of transitional planning possible so that the student has time
to familiarise him or herself with the environment they are moving into (e.g. pre-entry Summer
School or a chance to look at their room in residence before moving in)? It is desirable for the
learner to try things out because of their potentially having difficulty with imagining new
situations in the abstract.
Is there an opportunity to carry out a DSA needs assessment early so that support can be put
in place from the beginning of the course, and is the process for accessing DSA
communicated clearly and early so that delays are avoided? (It is possible in theory to do this
from the April of the year of entry. The challenge is to ensure that this information is known, to
secure an appropriate diagnosis to satisfy the student’s LEA, and to find an Assessment
Centre with a short enough waiting list and a sufficiently detailed understanding of AS).
Does the person carrying out the DSA assessment know about AS in general and the
individual in particular? Is the student prepared well so they know what to expect? Does the
assessor liaise closely (with the student's permission) with the DO in the university when
making support recommendations? (Increasingly the expectation is that a good quality needs
assessment will include this). It is necessary to ensure that the DSA assessment is realistic
about the sort of support which is feasible and that arrangements are expressed clearly so
that boundaries are made explicit. A note taker may be recommended for example who can
also help the student to organise his or her work. A buddy may be made available to assist
with social activities. In each instance, roles, times and boundaries must be clear to avoid
ambiguity. How is communication with parents organised during the DSA assessment, if they
sit in, in order to make sure that the student has the opportunity to put their view across? Is
time without parents in the room built in? Is the DSA assessment report written in positive
language which enhances self esteem?
89
Does the DO subsequently work with the student to negotiate how best any information
sharing should be organised to assist people to understand the sort of support which is likely
to be required? If advocacy backup is needed for this to be effective, what sort of strategies
can be employed to make sure that the student is putting their views across, rather than being
influenced heavily by the perceptions of a third part, such as a parent (or indeed an
advocate)? Are opportunities built in to revise the DSA over time, as requirements alter? (It
may be hard for the student to imagine that which they have not experienced so they may not
realise, for example, that a note taker would be helpful, having never attended a lecture
before).
Is the university experience considered holistically when the DSA assessment is carried out,
so that access to university life is not restricted to academic activity? (The potential for social
isolation and possible lack of independent living skills, such as cooking and managing money,
are important considerations and support with these aspects of life can mean the difference
between success and failure).
Are the named people in the university managing the transition process in liaison with each
other and in consultation with the student? (Parents are likely to have played a very large role
in enabling their son or daughter practically and socially as well as emotionally, and can be an
excellent source of advice, with appropriate permission from the student of course. Sensitivity
is required to the possibility that parents views may differ from those of their son or daughter).
Is staff development adequate, timely (anticipatory) and available to all relevant (not just
academic) staff? Residential services’ personnel, for example, are likely to need advice. It is
easy to assume that an articulate, well-presented young person has more ability to look after
him or herself than they actually possess. They may well have relied heavily on parents and
find it difficult to cope with practicalities, without fairly low key but reliable backup (e.g. an
early morning call, or being shown how to use the washing machine).Can practical support be
managed without too much fuss? Instructions on the wall by the washing machine, for
example, could help many students.
Do staff have the opportunity to consider their responsibilities under DDA Part 4 in relation to
what is required when working with a student with AS? (This could cover how behaviours
associated with AS may manifest themselves in the individual, appropriate responses from
staff, course / environmental requirements, and an understanding of confidentiality, and
issues around enabling a learner who may be very sensitive about the label). Is practical
advice for staff presented tactfully enough so they feel confident in their ability to enable the
student by providing reliable backup, rather than confused and worried? What sort of
arrangements are in place to ensure that all staff receive appropriate information, and
ongoing supervision as appropriate?
Are arrangements set up so that the student can make contact with the university, and
receive an appropriate informed response if necessary during the summer holiday after
leaving school /college and before starting as a university student? (Anxiety may build up
during this phase because of the uncertainty).Is it possible for a named person at the
university to make contact with the student during the pre entry summer holiday to make sure
they know what is going to happen on the first day? A brief phone call can make the
difference between worry escalating and diminishing. Is useful written and web based
information easily accessible?
90
Is the student's first contact with university planned (in liaison with parents/ appropriate
provider) and evaluated afterwards so that any problems, which arise, can be addressed
swiftly? (Is this the responsibility of a named individual)? Simple planning like ensuring that
the student is met by someone who is able to show them around can make a big difference,
as working out what to do in an ambiguous situation can pose a great challenge in an
unfamiliar environment. (One student, for example, described how much easier her first day
would have been if someone had shown her where relevant information was posted on notice
boards). If someone is meeting the student, is it possible for them to be the sort of person
who blends in easily?
On programme
'Having someone who knows about AS so they could tell you about more relevant things and
how things will work. You can ask things that you know others may find odd without feeling
stupid.'(Beardon and Edmonds 2007:150
Is there a method of helping the student to generate a clear comprehensible timetable as
early as possible so they can develop a sense of security? Are staff clear that unpredictable
changes to this timetable will be very confusing to students with AS who may struggle to work
out how to deal with the unexpected. A culture of informing of known changes in advance,
with an email or a note on the door or similar will help all students. Reliable use on the
intranet may well be best, rather than finding a ‘special’ method for an individual.
Social experience may be limited when the student begins HE, and they may have relied
quite heavily on family support for social contact. Is it possible to put some sort of regular
recreational activity in place and provide appropriate backup (from an unobtrusive person) to
facilitate attendance? (The student may have never travelled independently on public
transport for example and may need practical help with this). Can Fresher’s week be planned
really carefully to assist the student to develop a social timetable by joining clubs and
societies? Do activities have to revolve around booze? Does it have to be so noisy? Are
social opportunities outside university possible, for example attending a local church? The
National Autistic Society may advise of relevant activity in the area but it is important not to
assume that all students will identify with others just because they have AS. Recreation
revolving around a shared interest (for example chess) may be more helpful. One student
described being introduced to a ‘middle aged’ woman with AS. As an 18 year old young man,
he felt that he did not identify with her at all. Are social opportunities for students who live with
their parents considered?
Help to arrange health care, dentistry, bank accounts etc may also be required. What sort of
strategies can be employed to ensure that this is provided and monitored, and that the
student is taking care of their health, e.g. by eating regularly? At one university, all new
students were all ushered into a queue to sign up with a Doctor on day one, with very little
choice in the matter.
If a student is adamant that they do not require assistance and do not want people to know
they have AS, what can be done to ensure that their right to confidentiality is not
compromised? (The situation is most complex when a learner is unable to relate to the effect
of their behaviour on other people, or does not understand why aspects of course work are
falling below standard). Often, very direct advice which describes the impact of an action on
the student and does not contain a great deal of emotional content is required, e.g. ‘you have
91
to go on the field trip because if you don’t you will fail the course’. This response presents
factual information without unnecessary emotional overload.
Is it possible to support students without labelling them, via services not badged as being for
disabled students for example? Arguably, if staff suspect that someone has AS, a low key
approach to enabling the person to access reliable support services is likely to be more
empowering in some instances than an approach which requires a diagnosis. Very careful
consideration is vital before any interaction which involves mentioning AS to a student who
has not disclosed. They may have a diagnosis which they do not wish to share and view a
clumsy approach as highlighting their failure to blend in. Support accessed by dyslexic
students has been useful to some with AS.
Do staff feel supported and know where to go if they need help, and how to do this in a way
which will not compromise student confidentiality? (A one-off staff development event will not
be enough as people can be left feeling that they have to cope because they have had ' the
training’. Getting the message across that services need to be reliable and orientated towards
problem solving is helpful). How is staff training and supervision organised? Do practitioners
have clear job descriptions (e.g. is the role of a mentor clearly understood?).
Are DSA and other mechanisms organised so that personal assistance is provided, from the
start, including help or monitoring in halls of residence? Are services available from the start
of the course for students waiting for a DSA assessment?
Are support arrangements made absolutely clear to the student, reviewed regularly and
amended if necessary? (A single named person throughout the course may not be the best
idea as over identification may lead to a dependency relationship, but the student needs to
know what to do / where to go for support if they get into difficulties. A small team of people
(each with clear roles) able to offer backup at a regular time each week is probably best as
this is likely to be the most reliable system). A timetable which includes episodes of time
limited support which occur at regular times through the week can be beneficial as this can be
integrated into the routine. Some students have benefited from a ‘timetable everything’
approach to help them to plan academically, practically and socially. ‘Launderette’ may
appear for example as a regular Tuesday evening activity.
Are transitions and changes which take place throughout the course managed in a way that
minimises stress? (E.g. changing modules, work placements, around exam time) Wherever
possible, can a student be notified of changes, e.g. to the timetable, in advance. Can some
worry-inducing changes be avoided, e.g. could staying in halls for the duration of the course
be an option? Is it possible to organise an induction to each year, which outlines
arrangements are expectations and sources of assistance? Can specific services (internal
and external), relating to particular phases be introduced early (for example careers advisors
or NAS Prospects)?
Are systems for communicating with the student made clear so that they know for e.g. to
expect e mail instructions, electronic versions of handouts in advance of lectures, a text to
warn of a room change or similar? Sometimes electronic communication is less stressful and
has clearer boundaries than face-to-face interaction. If this approach is adopted, it may be
necessary to teach the student to use e mail succinctly. Ideally students should be able to
stipulate their preference.
92
Are mechanisms in place to help the student to work through ideas in order to see
connections between aspects of the course and to generalise and apply learning across
contexts? Lack of flexible imagination can be a characteristic of AS so support to do this is a
legitimate, disability related reasonable adjustment, which could be addressed in study skills
sessions.
Does help with personal organisation, if required extend to practical self help skills, such as
shopping, as well as academic backup, like filing work properly?
Are mechanisms in place to assist students who may have chosen the wrong course?
Transitions and pre-exit support
'…Help to find a suitable placement, support in interviews'
(Beardon and Edmonds 2007:151)
Is careful consideration given to the requirements an individual may have in relation to field
trips, visits and work experience? It may be that the academic side of this activity is relatively
straightforward, but advice on how to interact socially, what to wear, where to catch the bus
etc may be required. Advising the student of appropriate dress and topics of conversation, in
quite a direct way, may be helpful for some.
Is there enough flexibility in the system to facilitate exam arrangements, which minimise
stress? Extra time or a separate room may be needed. The student may benefit from some
control of the space to minimise sensory overload, e.g. they may choose to work with the
blinds down. Exam instructions and questions should be expressed in unambiguous language
and the format of the paper should be clear and familiar. The student may need prompting to
go onto the next question and to understand time constraints. Rest breaks may be required. If
the student has dyslexia in addition to AS or uses unusual, possibly pedantic language they
should not be penalised for this. Practice with a reader or scribe will be essential if this is to
be used, and changing personnel at the last minute would not be an option. The exam routine
itself may be very stressful and should be made as clear as possible. Can alternatives to
exams be explored in some instances?
Are systems flexible enough to ensure that the student is given every opportunity to succeed?
(Credit accumulation and transfer, modular courses, flexible modes of delivery, timescale etc,
and combined studies). Is a change of course within the same institution possible where
necessary? Is time out an option and if so, is it possible to support the student in making sure
this time is not wasted- e.g. by studying for an Open University module from home for a
period of time.
Prior to the end of course, are supportive and sustained transitional arrangements for moving
on put in place e.g. with input from specialist careers and other agencies e.g. the NAS
‘Prospects’ service? Moving from graduation to employment can pose particular challenges
and reports indicate that some highly successful graduates with AS go on to be unemployed
or under employed. Assistance to make choices about the sort of jobs which play to an
individuals strengths would be useful. Practice interviews, advice on personal presentation,
assistance with job search and job trials and so on may be beneficial. It is possible to build
this into the DSA report, which can include recommendations for ‘top up’ assessments at key
points, as circumstances change?
93
Culture
Is the approach positive so that the student is seen as someone who can contribute and do
well rather than a potential problem? Is this done without applying subliminal or overt
pressure on the person with AS to be ‘the next Einstein’?
Is there a thriving culture of inclusive practice and valuing and celebrating diversity within the
organisation?
Is the responsibility for supporting students owned and shared by people at all levels?
Summary
REAL stands for reliable, empathic, anticipatory, and logical.
Services which are REAL are likely to be most appropriate.
Students with AS have achieved in HE with enormous personal determination and the backup
of sensitive services and often family members. Careful planning to ensure that reliable help
is in place from as early as possible is most likely to facilitate success.
When staff are prepared and open to the idea that AS, an ambiguous hidden condition, is
real, and that seemingly trivial things can create significant problems, they feel more able to
assist effectively. Often small anticipatory adjustments designed to make routines predictable
can alleviate potential difficulties quite easily.
Practitioners feel more confident if they can access straightforward logical information about
the sort of unambiguous reliable backup which is likely to be effective, and understand the
valuable part they can play in ensuring that this occurs.
It is not necessary or desirable to hold the students hand all the time but it is essential to be
clear about the services available, and reliable in their delivery. It is essential to listen to the
student and developing services appropriate to the individual. There is no such thing as a one
size fits all solution.
Help with practical and social activities is often as important as academic support, therefore
personnel from all parts of the university would benefit from an awareness of their role in
assisting students with AS.
All staff development activities need to caution against stereotyping and emphasise that no
two individuals with AS are the same.
A culture which values diversity and is committed to student success is likely to make
university more user friendly over time. The ethos of the Disability Equality Duty may be
helpful. Involvement of students with AS in disability equality training will enable staff to listen
to, and learn from first hand experiences. The success of current learners who have AS may
make it easier for those who follow on.
Practitioners need to flex their empathy muscles and try to see the world from the perspective
of individuals with AS.
94
5.2 Evaluation and Assessment of How the Study has met its Aims
The study includes a thorough literature review incorporating and integrating diverse sources
but this will only remain current for a limited time, as interest in AS is mushrooming in the
popular and academic media. Increasingly, people with AS are putting their own views across
and this work is already starting to look a bit old fashioned because these voices are not
reflected significantly enough here.
Prevalence of learners with AS in participating universities has been investigated in broad
terms and supports the hypothesis that a concentration in science based courses (including
ICT) is apparent. Young male science students with good A levels are the most frequently
occurring and this mitigates against the contention that accessing university via non traditional
routes is common among students with AS. A small sample of female students within the
overall cohort indicated a trend towards arts based provision for women. With such limited
data it is unwise to draw over general conclusions, but further investigation into this would be
interesting.
The sample related to only 17 universities and relied on the subjective impressions of
participating staff rather than hard data, therefore the information is only partially valid. It does
however suggest a year on year increase, a concentration of young males in the sciences
and a tendency to come into HE via the A Level route. The aim of finding out this much has
therefore been realised with the caveat that subjectivity and memory and the phenomenology
of participants interact to render the information more impressionistic than solid.
Initial mapping of sources of information about AS and staff development accessed by
participating practitioners was achieved. Internet and popular media portrayals, as well as
contact via family and friends were more common than academic engagement, for example
via journals or training. Arguably this could lead to perpetuation of stereotypes.
A direct comparison between data on initial sources of information and first impressions upon
meeting a person with AS was not possible but practitioners’ commentary about first
impressions and changes over time is included and informs further discussion .
Gaps in the availability of timely, relevant staff development opportunities were found during
this research. The exercise revealed that practitioners often did not feel adequately prepared
and would prefer focussed input relating to the university context prior to working with
students.
A recurrent theme in the feedback about challenges faced by students was that the
practicalities of daily living were high on the agenda. Residential services staff, and mentors
employed to support with this aspect of university life were identified as important but people
offering this sort of service did not have much access to relevant staff development. The
study succeeded in flagging up the requirement for a team approach and for training to
include all relevant staff.
Parents were frequently cited as a significant source of backup. Many students lived with their
parents, travelled home frequently, or moved back during stressful episodes. Confidentiality
and the primacy of the relationship between the student and the institution could be seen to
work against exploiting the rich seem of knowledge and understanding a parent may have.
The Good Practice Guidelines attempted to address potentially helpful ways to tackle this
without compromising the autonomy of the student.
95
Guidance about effective DSA assessment arose from the study which indicated that
practitioners valued the opportunity to discuss assessment recommendations before working
with the student. Early DSA assessment is indicated to ensure that help is available when
most needed, in the beginning, when everything is new and unfamiliar. Pre entry information
about how to access the DSA is therefore essential.
Clearly, the need for more coherent approach to practitioner training, including a wider cross
section of staff has been identified. Evaluations suggested that user friendly, context specific
staff development opportunities were delivered by the author. Content and presentation was
informed by the evaluations from the participants and modified accordingly, in order to
describe strategies which practitioners (mainly) felt to be workable. The next stage is involving
students with AS in the delivery of staff development.
Engagement with students, and people nominated by them, to add richness to the information
about effective ways of supporting students with AS in HE was far more limited than first
anticipated, and the balance between the ideas of students, staff and others identified by the
learners, was not achieved.
Reflection on deficits in the methodology which may have lead to this have already been
explored, and the author intends to attempt future research designed to realise the ambition
of finding out what students think in a more effective way.
The main tangible result to date is that over 130 professionals have more awareness of the
requirements of learners with AS at university through participation in staff development
activities with a specific HE focus. Others have engaged with the issues via e-mail forums
and, as well as making their own contribution, have received advice and guidance which they
have described as useful.
The aim of generating Good Practice Guidelines and disseminating these more widely than
the original participating universities has been realised via conferences, websites, e-mail lists
and publications.
In addition, the author has written a module as part of Certificate of Higher Education (first
year degree level) programme, which specifically addresses effective support for learners with
AS in HE. Critical reflection and therefore deeper engagement is required from people who
are expected to produce an assignment for HE credit, rather than just to attend a staff
development event. This is therefore a positive development.
Further evaluation over time will be necessary in order to ascertain whether this piece of work
has been helpful in practice. It is not possible to judge whether this central aim will be realised
at this stage. The method of dissemination will at least ensure that it is not stuck on a shelf
and totally forgotten.
96
5.3 Suggestions for Further Study
Truly emancipatory research in this area would be controlled by students with AS, and this
would be a good way forward.
Although the study met its aims to the extent described earlier, the researcher acknowledges
that, by definition the outcomes are bound to be subjective and impressionistic to an extent.
Therefore the findings must not be generalised as if they definitely hold true in every
institution, for every learner with AS.
The individuality of the learners has been emphasised throughout, but it is also necessary to
acknowledge the variation between and within universities. Participating staff had an interest
in enabling learners with AS. The positive approach and degree of empathy and concern they
expressed, may not be indicative of the attitude of all their colleagues. Institutional culture and
its impact on learners with AS is outside the scope of this research but the author suggests
with caution that this would present a further avenue of interest. This study was limited to
staff who were interested in AS. Those who did not attend may have revealing alternative
insights.
The use of Grounded Theory to plot responses of participants via themes lends itself to
outcomes, which are open to interpretation because of the potential influence of interaction of
the phenomenology of all concerned. An underestimation by the researcher of how difficult
analysis by this system would be in practice also suggests flaws in the initial research
methodology. The author has filtered subjective comments in an attempt to come up with
useful interpretations and does not claim to have done more than this. Future research is
possible interrogating data already collected via for different themes, or from alternative
phenomenological stances.
Disappointingly, the student voice is faint. Evaluation by students of the resulting Good
Practice Guidelines could provide some insights into their impact in the future, and this may
be an angle for further investigation.
Professionals, parents, and representatives from other agencies, may also provide additional
insights into the usefulness of the guidelines from a range of perspectives. Statutory and
voluntary bodies operating outside the universities (such as Connexions, Social Services and
the NAS) may wish to challenge the impression of participants that the resource they are able
to offer is very limited. Publication of a directory of additional sources of backup from a multi
agency perspective could be very useful.
In addition to the Good Practice Guidelines and additional resources for staff development, a
database of rich and useful comments from practitioners, students and mothers now exists
and could be subjected to further scrutiny over time from other angles.
Follow up of students who did not complete may yield interesting findings. The assertion that
successful graduate's who have AS are often under employed certainly merits investigation.
Replicating the study in the future may yield some interesting information in relation to the
impact of the Disability Equality Duty While practitioners are beginning to understand their
legislative responsibilities in relation to students with more immediately obvious impairments,
97
it is possible that this understanding will come later in relation to students with hidden
impairments.
The experience of students with AS was not compared in any way with that of other learners,
in this study. Frequently quoted overlaps with dyslexia were cited here. Examining the
effectiveness of support designed for dyslexic students from the perspective of those with
dyslexia and those with AS may be an interesting avenue. Comparison between the
perceptions of students with hidden and more obvious impairments may be of value.
An increased awareness of strategies, which might work in a practical context, is desirable,
provided staff know that sensitivity must be applied and stereotyping is to be avoided. The
author hopes that this point got across and presents the Good Practice Guidelines with the
health warning that they are not a one size fits all solution.
98
References
Adams. M. Brown. S. (2006) eds. ‘Towards Inclusive Learning in Higher Education.
Developing Curricula for Disabled Students’. London. New York. Routledge
Adams. M. Holland. S. (2006) ‘Improving Access to Higher Education for Disabled People’. In
Adams and Brown 2006 op cit p10-22
Allen. L. Dickinson. Y. (2004) Editorial ‘Inclusion . A Focus on Disability and Widening
Participation in Higher Education’ Action on Access. 3. Autumn 2004:1
‘All Party Parliamentary Group on Autism Manifesto’ (2003) London: HMSO
Alverez. A.; Reid. Z (2003) Autism and Personality: Findings from the Tavistock Autism
Working Group London: Jessica Kingsley
American Psychiatric Association (1994) Diagnostic and Statistical Manual of Mental
Disorders, 4th edition. DC: American Psychiatric Association
Archer. M. (1997). ‘Welcome to My World.’ Special Children. Nov. / Dec. 1997;21-23
Ariel. C. Naseef. R (2006) Eds: ‘Voices from the Spectrum . Parents, Grandparents, Siblings,
People with Autism and Professionals Share their Wisdom’. London. Jessica Kingsley
Arnold L (2003) Neurological Difference Page www.lary-arnold.info/neurodiversity/index.htm
accessed 12-12 07
Arnold. L. (2004) ‘Self Harm in Schools. Just a Craze?’ in C. Donnellan ed. Self Inflicted
Violence Volume 77. :30-31 Cambridge: Independent Educational Publishers
Ashton-Smith. J. (1997) ‘Living and Learning with Autism : Perspectives from the Individual,
the Family and the Professional’. 8th Annual International Research Conference of the Autism
Research Unit, Sunderland and the NAS, 7-9 April 1997, University of Durham Autism: The
International Journal of Research and Practice 1(2):239-242
Asperger H (1944) Autistic Psychopathy in Childhood. A translation of the paper by Frith U.
Frith U ed (1991) Autism and Asperger Syndrome. Cambridge University Press
Aspergerunited www.nas.org/aspergerunited accessed 1-11-06
Aspiesforfreedom wwwaspiesforfreedom.com accessed 12-11-06
Attfield. E. Morgan. H. (2007) ‘Living with Autistic Spectrum Disorders. Guidance for Parents,
Carers and Syblings, London. Paul Chapman
Attwood. T. (1993) Why Does Chris do That? London: National Autistic Society
Attwood. T. (1998) Asperger’s Syndrome. A Guide for Parents and Professionals
London: Jessica Kingsley
Attwood. T. (2000) 'Strategies for Improving Social Interaction of Children with Asperger
Syndrome'. Autism, The International Journal of Research and Practice 4.1:85-101
Attwood. T. (2000)a ‘The Autism Epidemic. Real or Imagined’ Autism and Asperger’s Digest.
Nov-Dec 2000. London. NAS
Attwood. T (2007) ‘The Complete Guide to Asperger’s Syndrome. London. Jessica Kingsley
Baillie. J. Tunnock. J (2004) ‘Establishing an Inclusive Student Peer Mentoring Programme at
Napier University’ The Skill Journal 78:7-10
Ball. C.(1990) ‘More Means Different: Widening Access to Higher Education’ Industry
Matters. London: RSA
Barnes. C. (1996) ‘Theories Of Disability and the Origins of Oppression of Disabled People in
Western Society’ in Barton. L. (1996) ed. Disability and Society. Emerging Issues and
Insights. Longman. London
Barnes. C. (1999) ‘Disability Studies. New or Not So New Directions.’ Disability and Society.
14.4: 577-580
Baron-Cohen. S.; Bolton .P. (1993) Autism. The facts Oxford University Press
99
Baron-Cohen. S. Wheelwright. S.. Skinner. R. Martin. J. (2001) ‘The Autism Spectrum
Quotent. AQ. A self administered test for high functioning autism (HFA). Cambridge. Autism
Research Centre
Baron- Cohen. S. (2003) ‘The Essential Difference’. London. Penguin
Beardon. L. Edmonds G (2007) ‘ASPECT Consultancy Report. A National Report on the
Needs of Adults with Asperger Syndrome’www.shu.ac.uk/theautismcentre accessed11-11-07
Beaumont. R. Newcombe P (2006) Theory Of Mind And Central Coherence In Adults With
High Functioning Autism And Asperger Syndrome. Autism. The International Journal of
Research and Practice. 10. 4 :365-382
Bell. D. (2006) ‘ Lets Stop Forcing Square Pegs Into Round Holes: Eight Key Areas for the
Assessment of Adults With Asperger’s Syndrome,’ Good Autism Practice. 7. 2: 71-75
Bell. J. (1993) Doing Your Research Project (2nd edition). Bucks: Open University Press
Bishop. D. (1989) ‘Autism, Asperger’s Syndrome, and Semantic-Pragmatic Disorder: Where
are the Boundaries?’ British Journal of Disorders in Communication 24:07-121
Boelte. S. Poustka. F. (2000) 'Diagnosis Of Autism.; The Connection Between Current and
Historic Information' Autism: The International Journal of Research and Practice. 4.4:382-390
Bogdashina. O. (2003) ‘Sensory Perceptual Issues in Autism and Asperger Syndrome.
Different Sensory Experiences. Different Perceptual Worlds’. London. Jessica Kingsley
Bogdashina. O (2005) ‘Communication Issues in Autism and Asperger Syndrome. Do We
Speak The Same Language?’ London. Jessica Kingsley
Bogdashina. O. (2006) ‘Theory of Mind and the Triad of Perspectives on Autism and
Asperger Syndrome. A View from the Bridge’. London. Jessica Kingsley
Bogdashina. O (2006a) ‘Autistic Accounts of Sensory Perceptual Experiences. Should We
Listen?’ Good Autism Practice. 7.1. May 2006
Boushey. A. (2007) ‘Talking Teenagers. Information and Inspiration For Parents of
Teenagers With Autism or Asperger Syndrome’. London. Jessica Kingsley
BRAINHE www.brainhe.com accessed 11-11-2007
Breakey. C (2006). The Autistic Spectrum and Further Education: A Guide to Good Practice.
London: Jessica Kingsley
British Psychological Society (1997) Ethical Principles for Conducting Research with Human
Participants Leicester: British Psychological Society
Broach. S (2002) ‘Autism in the Public Eye’ Communication: The Magazine of the National
Autistic Society 36.2 Summer 2002:32-33
Bryson. B. (2003) ‘A Short History of Everything’ New York. Random House
Cann. P.(1997)‘Increased Recognition Boosts Autism Numbers’Special Children.April 1997: 3
Cann. P. (1998) ‘All or Nothing’ Special Children April 1998:18-19
Cantanino. R. Vivanti. G. (2007) ‘Tics And Torette’s Syndrome in Autistic Spectrum
Disorders’. International Journal of Research and Practice: Autism. 11. 1:19-28
Carlton. S. (1993) The Other Side of Autism Worcester: Self Publishing Association
Carpenter. B.; Addenbrooke. M.; Attfield. E.; Conway S. (2004) ‘Celebrating Families: An
Inclusive Model of Family-Centred Training’ British Journal of Special Education. 3.12:75-80
Celani.G. (2002) 'Human Beings, Animals and Inanimate Objects: What do People with
Autism Like?' Autism: The International Journal of Research and Practice. 6:1.93-103
Clements. J. (2005) ‘People with Autism Behaving Badly. Helping People With ASD Move On
from Behavioural and Emotional Challenges’ London. Jessica Kingsley
Clubley. E. (2001) Evidence from Asperger’s Syndrome /High Functioning Autism.Males and
Females,Scientists and Mathematicians’Journal of Autism and Developmental Disorders.
3.10:5-17
100
Coates. S. (1996) ‘Issues Relating to the Further Education and Support of Students with
Autism’. The Skill Journal: The Journal about Education, Training and Employment for People
with Learning Difficulties and / or Disabilities 54 :11-14
Cohen. N (2007) ‘Autism. Why is it Always Boys?’ New Statesman 26-02-07 :40-42
Coolican. H (1999) Introduction to Research Methods and Statistics in Psychology (10th ed.)
London: Hodder and Stoughton
Coolican. H (2004) Research Methods and Statistics in Psychology (4th ed.) London: Hodder
and Stoughton
Cottrell. S. (2003) ‘Students with Dyslexia and Other Specific Learning Disabilities’ in: S.
Powell. ed Special Teaching in Higher Education: Successful Strategies for Inclusion (2003)
London: Kegan Page VA
Crewe. C. (2002) 'About a Boy'. The Times Magazine. 10-08-02:33-36
Croucher. K. (2004) ‘What Happens Next? A Report on the First Destinations of 2002
Graduates with Disabilities’. ‘The Skill Journal: The Journal about Education, Training and
Employment for People with Learning Difficulties and /or Disabilities 79 July2004:1-3
Csoti. M. (2004) ‘Learn to Relax’ Special. Supporting and Developing Good Practice. The
Official Magazine of the National Association of Special Educational Needs. Summer
2004:17-19
Cumine. V.; Leach. J.; Stevenson. G. (1998). Asperger Syndrome. A Practical Guide for
Teachers London: David Fulton
Curtis. P. (2004) ‘Guiding light’ in C. Donnellan ed. Self Inflicted Violence Volume 77:15-16
Cambridge: Independent Educational Publishers
Danta. M. (2006) ‘Perspectives’ in Ariel and Naseef. (2006) op. cit:25-27
Darling-Hammond. L.; Wise. A.; Pease. S. (1986) Teacher Evaluation in the Organisational
Context: A Review of the Literature House. E. (ed.). (1986) op cit: 203-254
Datlow- Smith. M.; Belcher. R.; Juhrs. P.; (1995) 'A Guide to Successful Employment for
Individuals with Autism' Baltimore. London: Paul Brooks
Data Protection Act 91998) Office of Public Sector Information. London
Dearing. R (1997) Higher Education in the Learning Society The Dearing Report London:
HMSO
Debbault. D. (2002) Autism, Advocates, and Law Enforcement Professionals: Recognising
and Reducing Risk Situations for People with Autistic Spectrum Disorders
London/Philadelphia: Jessica Kingsley
Deimel. L. (2004) ‘How Diagnosis Can Change an Outlook on Employment for Asperger
Syndrome People. A Personal Account’ Good Autism Practice. 5.1:25-31
Dickinson. Y. (2005) Widening Participation and Disability: National Disability Team
DfEE (1998) FE for the New Millenium: A Response to Kennedy London: Department for
Education and Skills(DfES)
DfES (2002) Autistic Spectrum Disorders. Good Practice Guidance London: DfES
DfES (2006-7) Bridging the Gap: A Guide to Disabled Student's Allowances (DSAs) in Higher
Education in 2004-5 DfES. London
DfES (2005-6) Bridging the Gap: A Guide to Disabled Student's Allowances (DSAs) in Higher
Education In 2005-6 Www.Dfes.Gov.Uk
DfES(2005) ‘ Disabled Students Allowances’ Version 1.1 Feb 2005. dfes.gov.uk
DfES (2005)SpLD Working Party Draft Guidelines.London:DfES
Disability Rights Commission (DRC) (2002) Disability Discrimination Act 1995 Part 4: Code of
Practice For Providers of Post 16 Education and Related Services’ London: DRC
Disability Equality Duty(2006).www.drc-gb.org accessed 09-01-06
Dobbs R (2006) How to be a Genius. New Scientist 15 September 2006
www.newscientist.com accessed 30-11-06
101
Donnellan ed. Self Inflicted Violence Volume 77. :30-31 Cambridge: Independent Educational
Publishers
Duke C (2004) ‘Transit, Arrival and Survival- Normalising University’. Action on Access. A
Focus on Disability and Widening Participation in Higher Education
3 Autumn 2004:2-6
Dyson. A. (2001) 'Special Needs in the Twenty-First Century: Where We Have Been and
Where We Are Going British Journal of Special Education 28.1.24-29
Dyson. A.; Millward. A. (2000). Schools and Special Needs London:Thomas Oaks
Edmonds. G. Worton. D. (2005) ‘The Asperger Syndrome Love Guide. A Practical Guide for
Adults with AS to Seeking, Establishing and Maintaining Successful Relationships’. London.
Paul Chapman
Edmonds. G. Worton. D. (2006) ‘The AS social Guide. How to Relate with Confidence to
Anyone in any Social Situation as an Adult with Asperger Syndrome’. London. Paul Chapman
Elliot. J. (1992) Action Research for Educational Change. Buckingham:Open University Press
Equality Challenge Unit (2004) Employing Disabled People in Higher Education. Guidance
London: ECU
Eriksson. B.; Johnstone. D. (2004) ‘Disabled Students in Higher Education - A Pilot Study in
Two European Universities’ The Skill Journal Research Supplement 78:1-9
Farrar. V. (2006) ‘Equal to the Task. Disability Issues in Post Graduate Research. In Adams
And Brown (2006) Op Cit.:176-186
Farrell. P. (2001) ‘Special Education in the Last Twenty Years: Have Things Really Got
Better?' British Journal of Special Education. 28(1)p3-9
Fell. B. Wray. J. (2006) ‘Supporting Disabled Students on Placement’. In Adams and Brown.
(2006) op cit.:164-175
Fernie. T. Henning. M. (2006) ‘From a Disabling World to a New Vision’ in Adams and Brown
(2006) op cit:23-31
Fink. A. (1995) The Survey Handbook California: Sage
Fitzgerald. M.; Matthews. P. (1998) ‘Increased Mortality in Persons with Autism’ Autism: The
International Journal of Research and Practice. 2.4:429-430
Flanagan. C (2000) ‘Conducting your own Research’ in Russell. J.; Flanagan. C.; Dolan. L.
eds Angles on Psychology:197-242. Cheltenham: Stanley Thornes
Fleisher M. (2002) Making Sense of the Unfeasible. My Life Journey with Asperger Syndrome
London: Jessica Kingsley
Fletcher G (2006) What's in a Name? Disability Now 21;74
Further Education Funding Council (1999-00) Funding Guidance Coventry: FEFC
Further Education Funding Council (1997) Identifying and Addressing Need: A Practical
Guide Coventry: FEFC
Fling. E.R. (2000) Eating an Artichoke. A Mother’s Perspective on Asperger’s Syndrome
London: Jessica Kingsley
Fleisher M (2003) Survival Skills for People on The Autistic Spectrum. London: Jessica
Kingsley
Frith. U. (ed.) (1991) Autism and Asperger’s Syndrome Cambridge University Press
Frith. U. (1989) Autism: Explaining the Enigma Oxford: Blackwell
Fryer. R. (1997) Learning for the Twenty First Century: First report of the National Advisory
Group for Continuing Education and Lifelong Learning London: DfEE
Gale. A. (1995) ‘Ethical Issues in Psychological Research’ in Colman. A. ed. (1995)
Psychological Research Methods and Statistics. London/NY: Longman:93-112
Gillberg C (1989) in Wing L (ed) Diagnosis and Treatment of Autism.New York. Plenum
102
Goddard. K. (2004) ‘Draft Disability Discrimination Bill: An Update’ The Skill Journal: The
Journal about Education, Training and Employment for People with Learning Difficulties and /
or Disabilities 79 July2004:10-12
Goffman E (1963) Stigma. Notes on the Management of a Spoiled Identity. Prentice Hall.
Englewood Cliffs NJ
Goleman. D. (1996) Emotional Intelligence London: Bloomsbury
Goode J (2007) Managing Disability. Early Experiences of University Students with
Disabilities. Disability and Society 22. 1:35-49 January 2007
Goulde. J Ong B (1998) Can Asperger Disorder be Different from Autism using DSMIV
Autism. International Journal of Research and Practice. 4;29-46
Graham. G. (1994) The INTERACT Centre: An Applied Communication and Vocational Skills
Course for People with Autism London: Hanwell Community Centre
Grandin T Scariano M (1986) Emergence. Labelled Autistic. Warner Books. USA
Grandin. T. (1996). Thinking in Pictures and Other Reports on My Life with Autism. New York.
Vintage Books
Grandin. T. Johnsone. C. (2005) ‘Animals in Translation’.London. Bloomsbury.
Gray. C (2002) The New Social Story Book Winslow: Future Horizons
Grooden. J.; Cauletta. J.; Prince. S.; Berryman. J. (1994) ‘The Impact of Stress and Anxiety
on Individuals with Autism and Developmental Disabilities in Schopler and Mesibov (1994)
(eds) op cit:177-194
Gross. J. (1994) ‘Asperger Syndrome: A Label Worth Having? Educational Psychology in
Practice 10 .2:104-110
Gross. R.; McLiveen. R. (2003) Perspectives in Psychology London: Hodder and Stoughton
Haddon. M. (2003) The Curious Incident of The Dog in The Night Oxford/New York: David
Fickling Books
Hall. T. Stahl. S (2006) ‘Using Universal Design for Learning to Expand Access to Higher
Education’. In Adams and Brown. (2006) op cit:67-77
Hare. D. (1997) ‘The Use of Cognitive-Behavioural Therapy with People with Asperger
Syndrome: A Case Study’ Autism: The International Journal of Research and Practice.
1.2:215-227
Hare. D. (2004) ‘Developing Cognitive Behavioural Work with People with ASD’ Good Autism
Practice 5.1:18-22
Harpur. J.; Lawlor. M.; Fitzgerald. M. (2004) ‘Succeeding in College with Asperger Syndrome’
London/NY: Jessica Kingsley
Harris. S. (1994) ‘Treatment of Family Problems in Autism’ in Schopler and Mesibov (1994)
(eds) op cit:161-173
Hawkins. G. (2004) How to Find Work that Works for People with Asperger Syndrome
London: Jessica Kingsley
Healey. M. Bradley. A. Fuller.M. Hall. T. (2006) ‘Listening to Students. The Experience of
Disabled Students of Learning at University’. In Adams and Brown (2006) op cit: 33-43
Helps. S.; Newson-Davis I. C.; Callias. M. (1999) 'Autism. The Teachers' View' Autism: The
International Journal of Research and Practice 3.3.:287-298
Henry. C. (1995) ‘The Research Base. The Ownership of Values’ in C. Henry. ed.
Professional Ethics and Organisational Change in Education and Health London: Edward
Arnold:120-125
Hermelin. B. (2003) ‘Bright Splinters of The Mind: A Personal Story of Research with Autistic
Savants’ London: Jessica Kingsley
Higher Education Statistical Agency (HESA) (2003-4) The Number of First Year Domiciled
Disabled HE Students by Impairment
103
Higher Education Statistical Agency (HESA) (2003-4) The Number of First Year Domiciled
Disabled HE Students by Qualification Aim
HESA (2003-4) ‘Higher Education Statistical Agency Data’ in M. Adams NDT Update Jan
2005 www.ndt.org.uk
Hesmondhalgh. M.; Beakley. C. (2001) Access and Inclusion for Children with Autistic
Spectrum Disorders: Let Me In. London/Philladelphia: Jessica Kingsley
Hocking. B. (1990) Little Boy Lost London: Bloombury
Hodge. N. (2005) ‘ Reflections on Diagnosing Autism Spectrum Disorder’. Disability and
Society. 20.3: 345-349
Holland. S. Wilson. C. (2004) Transition from FE to HE: Challenges for Disabled People.
Action on Access. A Focus on Disability and Widening Participation in Higher Education 3
Autumn 2004:24-28
Holliday-Willey (2003) Asperger’s Syndrome in Adolescence: Living with the Ups and Downs
and Things in Between London: Jessica Kingsley
House. E. (ed.). (1986) New Directions in Educational Evaluation. London: Falmer
House. E. (1986) Evaluation and Legitimacy in E. House. (ed.). (1986) op cit 5-13
House. E. (1986) How do we Think About Evaluation in E. House. (ed.) (1986) op cit, 30-51
Howlin. P. (1994) ‘Supported Employment’ Communication 28.2:3-4
Howlin. P. (1997) Autism: Preparing for Adulthood. London: Routledge
Howlin. P.; Moore. A. (1997) ‘Diagnosis in Autism: A Survey of Over 1200 Patients in the UK'
Autism: The International Journal of Research and Practice 1.2:135-163
Howlin. P.; Yates. P. (1999) 'The Potential Effectiveness of Social Skills Groups for Adults
with Autism’ Autism: The International Journal of Research and Practice 3.3.: 299-307
Howlin. P. (2000) 'Outcome in Adult Life for More Able Individuals with Autism or Asperger
Syndrome' Autism: The International Journal of Research and Practice 4.1: 63-85
Howlin. P.; Baron-Cohen. S.; Hadwin. J. (2000) Teaching Children with Autism to Mind Read’
Chichester/New York: John Wiley and Sons
Hughes. P (2007) Reflections. Me and Planet Weirdo Chipmunk Publishing Ltd. UK
Human Rights Act (1998) Office of Public Sector Information. London
Hurst. A (2006) ‘Disability and Professional Development’. In Adams and Brown (2006) op cit.
154-163
Hutchins. M.; Renzaglia. A. (1998) ‘Interviewing Families for Effective Transition to
Employment’ Teaching Exceptional Children Mar/Apr 1998 72-77
Irlen. H. (1997) ‘Reading Problems and Irlen Coloured Lenses’ Dyslexia Review.8. 5: 4-7
Jackson. L (2004) Freaks, Geeks and Asperger Syndrome. London. Jessica Kingsley
Jameson. J. (2002) 'Learning from Disability Services in Similar American Universities' NADO
News: The Official Newsletter of the National Association of Disability Officers (5) September
02: 7-11
Johnson. R. (2005) ‘A Genius Explains’. Guardian Weekend Feb 12 2005 34-37
Jones. G. (2001) 'Giving the Diagnosis to the Young Person with Asperger Syndrome or High
Functioning Autism: Issues and strategies’ Good Autism Practice 2.2:.65-75
Jordan. R. (1998). ‘AiA International Conference on the Medical Basis of Autism, 3-4 October
1997, Solihull, UK.’ Autism: The International Journal of Research and Practice 2.1: 107-108
Jordan. R. (2001) 'The Effect of Culture on Service Provision for People with an Autistic
Spectrum Disorder' Good Autism Practice 2.2: 2-13
Kadjesjo. B. Gillberg. C. Hagsberg. B. (1999) ‘Brief Report. Autism and Asperger Syndrome.
A Total Population Study’. Journal of Autism and Developmental Disorders. 29.4: 327-331
Kelly. B. (2005)‘Chocolate Makes You Autism.Impairment. Disability and Childhood Identities’.
Disability and Society. 20.3: 261-276
104
Kemmis. S. (1986) ‘Seven Principles for Programme Evaluation in Curriculum Development
and Innovation’ in E. House. (ed.) (1986) op cit, 117-143
Kennedy. H. (1997) Learning Works.Widening Participation in Further Education. The
Kennedy Report Coventry: FEFC
Kirkup. G. (1986) ‘The Feminist Evaluator’ in E. House. (ed.) (1986) op cit, 68-87
Koegel. R.; Surrat. A. (1994) ‘Self Management of Problematic Social Behaviour’ in Schlopler
and Mesibov (1994) (eds) op cit, 81-97
Kugler. B. (1998) ‘The Differentiation Between Autism and Asperger Syndrome’ Autism: The
International Journal of Research and Practice 2.1: 11-33
Lawson. W ((2001) ‘Understanding and Working With the Spectrum of Autism. An Insiders
View’ London. Jessica Kingsley
Lawson. W (2006). ‘Typical Development, Learning Styles, Single Attention and Associated
Cognition in Autism (SAACA). Good Autism Practice. 7.2: 61-71
Leach.J. Birnie.J. (2006) ‘Developing an Inclusive Curriculum for a) Students with Mental
Health Issues and b) Students with Asperger Syndrome’ Geography Discipline Network. UK.
HEFCE. Open University. University of Gloucester
Learning and Skills Council (LSC) (2004-5) Funding Guidance Coventry: LSC
Le Coutier. A.; Rutter. M.; Lord. C.; Rios. P.; Robertson. S.; Holdgrafer. M.; McLennan. J.
(1989) 'Autism Diagnostic Interview: A Semi-Structured Interview for Parents and Caregivers
of Autistic Persons' Journal of Autism and Developmental Disorders 19.3: 363-87
Lee-O’Neill. J. (1998). ‘Autism: Isolation not Desolation - A Personal Account’ Autism: The
International Journal of Research and Practice 2.2: 199-204
Leekham. S.; Libby. S.; Wing. L.; Gould. J.; Gillberg. C. (2000) 'Comparison of ICD10 and
Gillberg's Criteria for Asperger's Syndrome' Autism: The International Journal of Research
and Practice 4.1:11-28
Lewis. C.; Corlett. S (2001) Survey of Disabled Students’ Allowances in Higher Education:
Report on the Administration of DSA’s Skill. London
Linton. S. (1998) ‘Claiming Disability Knowledge and Identity’ New York University Press
Lipp. E. (2006) ‘Our Lives at the Edge of the Spectrum’ in Ariel and Naseef .eds. (2006) op
cit. 60-63
Lovecky. D (2004) Different Minds: Gifted Children with AD/HD, Asperger Syndrome and
Other Learning Deficits London: Jessica Kingsley
Luckett. T.; Powell S. ‘Students with Autism and Asperger’s Syndrome’ in S. Powell. (ed.)
(2003) Special Teaching in Higher Education London: Kegan Page 159-177
Maclean-Wood (2003) ‘Challenging Behaviour: Understanding and Prevention’ Good Autism
Practice 4.2: 21-26
Macuair. T (2007) Asperger Syndrome. BBC.co.uk/health accessed 03-04-06
Madriaga M (2006) Research report on transition of disabled learners from further to higher
education. European Access Network Newsletter. 3 Feb 2006 www.ean-edu.org/news
accessed 07-02-07
Madriaga M. Goodley. D Hodge N Martin N (2008) Experiences and Identities of UK students
with Asperger Syndrome. www.heacademy.ac.uk/events/detail.research seminar/07February
08’Inclusive practice. Rhetoric or Reality accessed 07-02-08
Maslow. A.J.(1970) Motivation and Personality New York: Harper and Row
Mawhood. L.; Howlin. P. (1999) 'The Outcome of a Supported Employment Scheme for High
Functioning Adults with Autism or Asperger's Syndrome: Autism: The International Journal of
Research and Practice 3.3: 229-254
Marshall. P. (1997) Research Methods. Plymouth: How To Books
Martin. N. (1999) ‘Support in Transition for FE Students with AS Abstract’ DNA Day to Day,
Conference Proceedings :36
105
Martin. N (2000) ‘A Study of Possible Indicators of Dyslexia in Primary Children with a
Diagnosis of Asperger Syndrome’ Good Autism Practice
Martin. N (2004) ‘Transitional Planning: The Experience of an Adolescent with AS’ NADO
News Summer 2004 4-7
Martin N (2006) 'Strategies which Increase The Likelihood Of Success Of University Students
Who Have Asperger's Syndrome' Good Autism Practice. 8.1. June 2007
Martin N (2007) 'Personal Statements. Helping Transition to Further Education and
Employment. Good Autism Practice. 8. 2. October 2007 17-21
Martin. N. (2005) ‘Asperger’s Syndrome in the Workplace. Potential Difficulties and
Straightforward Sollutions’. The Skill Journal: The Journal about Education, Training and
Employment for People with Learning Difficulties and / or Disabilities 81: 30-34
Meikle. J. (2004) ‘One in Ten Teenagers Self- Harm’ in C. Donnellan (ed.) Self Inflicted
Violence Volume 77. p29 Cambridge: Independence Educational Publishers
Mercier. C.; Mottron. L.; Belleville. S. (2000) 'A Psychosocial Study on Restricted Interests in
High Functioning Persons with Pervasive Developmental Disorders' Autism: The International
Journal of Research and Practice 4.4: 406-425
Mesibov. G.; Howley. M. (2003) Accessing the Curriculum for Pupils with Autistic Spectrum
Disorders - Using the TEACCH Programme to Help Inclusion London: David Fulton
Mesibov. G.; Schopler. E.; Heasey. K. (1994) ‘Structured Teaching’ in Schopler and Mesibov
(1994) (eds) op cit, 195-207
Meyer. R. (2001) Asperger Syndrome Employment Workbook: An employment Workbook for
Adults with Asperger Syndrome' London/Philadelphia: Jessica Kingsley
Miller. P.; Parker. S.; Gillinson. S. (2004) Disablism: How to Tackle the Last Prejudice
London: Central Books
Mitchell P Parsons S Leonard A (2007) Using Virtual Environments to Teach Social
Understanding to Six Adolescents with Autistic Spectrum Disorders. Journal of Autism and
Developmental Disorder 37;3 March 2007 :589-600
Molloy. H.; Vasil. L. (2004) Asperger’s Syndrome, Adolescents and Identity: Looking Beyond
the Label .London/Philadelphia: Jessica Kingsley
Moran. H. (2006) ‘A Very Personal Assessment: Using a Personal Construct Psychology
Assessment Technique (Drawing The Ideal Self) with Young People with ASD to Explore The
Childs View of Self, Good Autism Practice. 7.2: 78-87
Morgan. A.(2006) ‘Snow Cake:The Film. Film and Book Review’ Good Autism Practice7.2: 93
Morton. O. (2001) 'Think Different? Inside the Mind of Autism Researcher Simon BaronCohen' Wired 9.12: 184-188
Moyes. M. (2002) Addressing the Challenging Behaviour of Children with High Functioning
Autism and Asperger Syndrome in the Classroom London/Philadelphia: Jessica Kingsley
National Autistic Society. (1996). Beyond Rain Man: Experiences and Attitudes Towards
Autism - A Survey of the General Public, People with Autism and Carers London: NAS
National Autistic Society (2005) www.NAS.org.uk accessed 11-12-05
National Disability Team (2005). NDT News. Chelmsford. NDT
Newson. E.; Dawson. M.; Everard. P. (1982) The Natural History of Able Autistic People:
Their Management and Functioning in Social Contexts (Summary of the Report to the DHSS
Including Recommendations London: Dept. of Health and Social Security, Nottingham
University, CDRU
Newson. E. (2000) ‘Using Humour to Enable Flexibility and Social Empathy in Children with
Asperger’s Syndrome: Some Practical Strategies’ in S. Powell (ed.) Helping Children with
Autism to Learn 94-107
106
NFAC Access Centre Manager (2002) 'A Regional NFAC Access Centre Quality Assurance
Survey NADO News: The official newsletter of the National Association of Disability Officers
(5) September 02:18-23
nnac (2005). ‘Annual Statistical Returns’ nnac.org.uk
Oliver. M. (1996) ‘A Sociology of Disability or a Disablist Society’ in Barton. L. (1996) ed.
Disability and Society. Emerging Issues and Insights. Longman. London
Oliver. M. (1996) ‘Understanding Disability, from Theory to Practice’. Basingstoke. Macmillan
Oliver. M (1997) 'Emancipatory Research: Realistic Goal or Impossible Dream ?' in Barnes.
C. Mercer. G. Doing Disability Research. The Disability Press. Leeds :15-31
Oosterhorn. B. (2005) ‘Transition Project: The Experience of Disabled Students Making the
Transition Between Institutions to Begin or Continue Their Higher Education’. The Skill
Journal: The Journal about Education, Training and Employment for People with Learning
Difficulties and / or Disabilities 81: 1-5
Orna. E.; Stevens. G. (1995) Managing Information for Research Bucks.: Open University
Press
Ozonoff. S. (1995) ‘Executive Function in Autism. In Schloper. E. and Mesibov G. Learning
and Cognition in Autism. New York. Plenum Press
Ozonoff. S.; South. M.; Miller. J. (2000) 'DSMIV Defined Asperger Syndrome: Cognitive,
Behavioural and Early History Differentiation from High Functioning Autism' Autism: The
International Journal of Research and Practice 4.1: 29-47
O’Connor. R (2005) Self Harm - What, Who, Why and How to Help Leicester: British
Psychological Society
O’Neil. J. (2005) ‘Aim Higher and Disability’ The Skill Journal: The Journal about Education,
Training and Employment for People with Learning Difficulties and / or Disabilities 81: 24-26
Peeters. T. (1997) Autism: From Theoretical Understanding to Educational Intervention
London: Whurr
Peeters. T.; Gillberg. C. (1999) Autism: Medical and Educational Aspects London: Whurr
Pegg. M (1999) The Art of Mentoring Management Books 2000 ltd. Gloucestershire
Penk. S. (2007) A New Voice in the House’ Disability Now. April 07. 24-25
Pellicano. E (2007) Autism as a developmental disorder. Tracking changes across time. The
Psychologist. 20:216-219
Phillips. W.; Baron- Cohen. S.; Rutter. M. (1998) ‘Understanding Intention in Normal
Development and in Autism’ British Journal of Developmental Psychology 16: 337-348
Pinney. A. (2002) 'In Need of Review? The Audit Commission's Report on Statutory
Assessment and Statements of Special Educational Needs' British Journal of Special
Education 29.3: 118-122
Powell. S. (1994) ‘Curriculum Approaches and Asperger’s Syndrome’ Paper to Conference:
Asperger’s Syndrome – Approaches to Intervention Chorley. 6:10-94
Powney. J.; Watts. M. (1987) Interviewing in Educational Research London: Routledge and
Kegan Paul
Pollak D (2003) 'Dyslexia, the Self and Higher Education' London.Trentham Books
Pozner. A.; Hammond. J. (1993) An Evaluation of Supported Employment Initiatives for
Disabled People Sheffield: Department for Employment
Pring. L.; Hermelin. B.; Buhler. M.; Walker. I. (1997) ‘Native Savant Talents and Acquired
Skill’ Autism: The International Journal of Research and Practice 1.2: 199-215
Prior. M.; (ed) (2003) ‘Learning and Behaviour Problems in Asperger Syndrome’ New York:
Guilford
Pukki. H. (2003) ‘Developing Expressions of Sexuality. The Perspective and Experience of
Able Autistic People’ Good Autism Practice 4.2: 60-65
107
QAA (Quality Assurance Agency) (1999) Code of Practice for the Assurance of Quality and
Standards in Higher Education, Section 3: Students with Disabilities London: QAA
QAG (2005) Disabled Student Allowance Quality Assurance Group – Guidance. DfES.gov.uk
Ravenhill. J (2002) ‘Social Stories for Difficult Situations’ Communication: The Magazine of
the National Autistic Society. 36(2) Summer 2002 37-38
Rimland.B.(1994) ‘Recovery from Autism is Possible’Autism Research Review International
8.2: 2
Ringman. Jankovic (2000) ‘Occurance of Tics in Asperger Syndrome and High Functioning
Autism, British Journal of Psychiatry . 186: 525-528
Roberts. J. (1995) Dear Psychiatrist… Do Childcare Specialists Understand? Cambridge:
Lutterworth
Robinson. S. (2001) 'Using Tutorial Time Effectively with Students with an ASD in Further and
Higher Education' Good Autism Practice 2.1: 2-7
Robinson. S. (2004) ‘Accredited Courses in Autism’ Good Autism Practice 5.1: 87-90
Sacks. O. (1995). An Anthropologist on Mars. London: Picadore
Schlopler. E.; Mesibov. G. (eds) (1994) Behavioural Issues in Autism New York: Plenum
Schlopler. E.; Mesibov. G.; Kunce. L. (eds) (1998) Asperger Syndrome or High -Functioning
Autism? New York: Plenum
Schloper. E.; Mesibov. G.; Kunce. L. (1998) Current Issues in Autism New York: Klumer
Academic, Plenum Publishing
Scriven. M. (1986) ‘Evaluation as a Paradigm for Educational Research’ in E. House. (ed).
(1986) op cit, 53-68
Sicilie-Kira. C. (2003) ‘Autistic Spectrum Disorders. The Complete Guide’ Vermillion
Sieber. J. (1992) Planning Ethically Responsible Research London: Sage
Silberman. S. (2001) 'The Geek Disease' Wired 9.12:174-184
Skill (2004) A Guide to the Disability Discrimination Act for Institutes of Further and Higher
Education (Revised Autumn 2004) London: Skill
Skill (2005) Into Higher Education: the Higher Education Guide for People with Disabilities.
Skill, National Bureau for Students with Disabilities
Shakespeare. T. (2002) (ed) The Disability Reader: Social Science Perspectives London/New
York: Continuum
Shakespeare. T. (2006) Disability Rights and Wrongs. Routledge. London. New York
Shore S (2003) Disclosure for People with Asperger Syndrome in Holliday-Wiley (ed)
Asperger Syndrome in Adolescence. Living with the Ups and Downs and Things in Between.
London ;Jessica Kingsley
Slater-Walker G. and C. (2002) An Asperger Marriage. London: Jessica Kingsley
Smith. J. (2003) Qualitative Psychology: A Practical Guide London: Sage
Smith. P. (1998) ‘Stretched to the Limit’ Special Children June/July 1998. 9-12
Smith. P (2004) Outside In (Video) NAS
Smith-Myles. B.; Simpson. R. (1998) 'Asperger Syndrome: A Guide for Educators and
Parents Austin, Texas: Pro-Ed
Snowden. M. (2004) ‘Mind the Gap - Conference Report’ The Skill Journal: The Journal about
Education, Training and Employment for People with Learning Difficulties and / or Disabilities
79 July2004 13-14
Social Services Inspectorate, Department of Health (1996) Growing Up and Moving On:
Report of an SSI Project on Transition Services for Disabled Young People London:
Department Of Health
Social Services Inspectorate, Department of Health (1996) Searching for Service: An
Inspection of Service Responses Made to the Needs of Disabled Young Adults and Their
Carers London: Department of Health
108
Stake. R. (1986) ‘An Evolutionary View of Programme Improvement’ in E. House. (ed). (1986)
Op Cit, 89-103
Stanford. A. (2003) Asperger’s Syndrome and Long Term Relationships London: Jessica
Kingsley
Stoddart. K. (1999) 'Adolescents with Asperger's Syndrome: Three Case Studies of Individual
Family Therapy' Autism: The International Journal of Research and Practice 3.3: 255-271
Sutton. P. (2002) ‘The Health Care Needs of Adults with Autism or Asperger’s Syndrome’
Communication: The Magazine of the National Autistic Society 36(2) Summer 2002 24
Tantam. D. (1992) A Mind of One’s Own: A Guide To The Special Difficulties and Needs of
the More Able Person with Autism Or Asperger Syndrome London: NAS
Tantam. D. (2000) ‘Psychological Disorders in Adolescents and Adults with Asperger
Syndrome' Autism: The International Journal of Research and Practice 4.1: 47-63
Thomas. C. (2004) ‘How is Disability Understood?’ Disability and Society 19.6: 563-568
Thomas. L. (2004) ‘Seeking and Negotiating Academic Support in Higher Education: A
Qualitative Analysis of the Experiences of Students with Mental Health Problems’ The Skill
Journal: The Journal about Education, Training and Employment for People with Learning
Difficulties and / or Disabilities 78: 3-6
Thompson. B. (2004) ‘Counselling Couples Where a Partner Has Asperger Syndrome’ Good
Autism Practice 5.2: 3-8
Thompson. J. (2000) (ed.) Stretching the Academy: The Politics and Practice of Widening
Participation in Higher Education Leicester: NIACE
Vermenulen. P. (2001) Autistic Thinking: This is the Title London: Jessica Kingsley
Tomlinson. J. (1996) Inclusive Learning. (The Tomlinson Report) Further Education Funding
Council. London: HMSO
Volkmar. F. (1998) ‘Categorical Approaches to The Diagnosis of Autism: An Overview Of
DSM-IV and ICD-10’ Autism: The International Journal of Research and Practice 2.1: 45-61
Walken. R. (1986) ‘Three Good Reasons for Not Doing Case Studies in Curriculum Research’
in E. House. (ed.) (1986) op cit, 103-117
Walker Sperry. V. (1995) Fragile Success: Nine Autistic Children – Childhood to Adulthood
Connecticut: Anchor
Walker Sperry. V. (1998) ‘From the Inside Looking Out – A View of The World as Seen By
One with Asperger Syndrome.’ Autism: The International Journal of Research and Practice’
2.1: 81-87
Waring. R.; Ngong. J. (1995) Sulphate Metabolism in Allergy Induced Autism: Relevance to
Disease Aetiology University of Birmingham: Dept. of Biochemistry
Waring. R. (1997) ‘Biochemical Parameters in Autism’ Autism: The International Journal of
Research and Practice 1.2: 235
Waterfield. J. West. B. Parker. M. (2006) ‘Supporting Inclusive Practice. Developing an
Assessment Toolkit’. In Adams and Brown (2006). Op cit.79-94
Watson. D.; Taylor. R. (1998) Lifelong Learning and the University: A Post Dearing Agenda
London: Falmer
Webster. A. (2005) ‘Review of Succeeding at College with Asperger’s Syndrome Harper et al
(2004)’ Times Educational Supplement Extra for Special Needs March 2005 11
Wedell. K. (2002) 'All Teachers Should be Teachers for Special Needs - But Is It Yet
Possible?’ British Journal of Special Education 29.3: 151
Weiss. C. (1986) ‘The Stakeholder Approach to Evaluation. Origins and Promises’. in E.
House (ed.) (1986) op cit, 145-158
Weiss. C. (1986) ‘Towards the Future of Stakeholder Approaches in Evaluation’ in E. House
(ed.) (1986) op cit, 186-201
109
WHO (1989). Tenth Revision of the International Classification of Diseases. Geneva. World
Health Organisation
Williams. D. (1998) Autism and Sensing: The Unlost Instinct London: Jessica Kingsley
Williams. D. (2004) Everyday Heaven: Beyond the Stereotype of Autism London: Jessica
Kingsley
Williams. C.; Wright. B. (2004) How to Live with Autism and Asperger’s Syndrome: Practical
Strategies for Parents and Professionals London: Jessica Kingsley
Wilson. C.; Holland. S. (2005) Reviewing Provision and Building Capacity for Disabled
Students: A Summary of Tools and Audit Processes Chelmsford: National Disability Team
Wilson. C. (2005) Checklists to Support Inclusion Chelmsford: National Disability Team
Windibank. N. (2002) 'The Problem is Understanding' NADO News: The Official Newsletter of
the National Association of Disability Officers (5) September 02 11-12
Wing. L. (1998). ‘Letters to the Editor: Prevalence of Autistic Spectrum Disorder in the UK: E.
Frombonne. Autism, 1997, 1 (2), 227-9’. Autism: The International Journal of Research and
Practice 2.1: 87-104
Wing. L. (1981). Asperger’s Syndrome. A Clinical Account. Psychological Medicine.11.15-129
Wing.L(1992)‘The Triad of Impairment of Social Interaction. An Aid to Diagnosis’ London.
NAS
Wing. L. (1996) The Autistic Spectrum: A Guide for Parents and Professionals
London: Constable
Wing. L. (2002) ‘Forty Years On - Memories of an NAS Founder Member’ Communication:
The Magazine of the National Autistic Society 36(2) Summer 2002 25-27
Wolff. S. (1995) Loners: The Life Path of Unusual Children London: Routledge
Wired (2001) ‘Take the AQ Test’ 9 (12) Dec. 2001. USA
Wolff. S. (1998) ‘Letters To The Editor: Is There a Link Between Engineering and Autism? S.
Baron Cohen et al. Autism. 97 1 (1).’ Autism: The International Journal of Research and
Practice 2.1: 96-97
Wood. R.; Tolley. H. (2003) Test Your Emotional Intelligence London: Kegan Page
110