Real services to assist students who have Asperger syndrome Nicola Martin Sheffield Hallam University Autism Centre



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REAL services to assist students

who have Asperger syndrome


Nicola Martin

Sheffield Hallam University Autism Centre

TABLE OF CONTENTS
Foreword by Professor Alan Hurst 3

Abstract 4

Introduction for Students 5

Introduction for Parents 6

Introduction for Practitioners 7

1. Objective of the Study 9

2. Literature Review 11

2.1 Characteristics of AS 11

2.2 The process of diagnosis 13

2.3 The effects of AS, with consideration to their potential impact in HE 17

2.4 Prevalence, gender and changes over time 23

2.5 Mechanisms for Supporting Students with AS in HE 25

2.6 Pre HE Experience 27

2.7 Coping with Change 29

2.8 Curriculum Versus Support 32

2.9 Support in HE 34

2.10 Staff Development 37 2.11 Critical Review Indicating Gaps in the Literature 38

3. Purpose 39

4. Results 48

Tables 49

5. General Conclusions 77

6. REAL Services to Assist University Students who have AS-Good Practice

Guidelines for staff 80

7. Suggestions for further study 96

References 98

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

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

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.

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.

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.

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.

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.
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.

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 sections-

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


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 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.

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 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 (1998:19-21) 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.

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