AN EVALUATION OF STRATEGIES TO ENABLE STUDENTS WITH ...
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.
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 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.
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.
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 co-ordinator 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 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. (, 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. 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.
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 experience- this 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)
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.
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,Slater-Walker 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’
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'
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.
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. Baron-Cohen (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 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 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 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 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 'non-traditional' 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 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.
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)
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 pre-requisite 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.
‘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, 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 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).
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 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.
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.
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.
• 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.
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.
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 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 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.
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.
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 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.
Results
Results are presented in this chapter in summary form.
|Reference |Title |
|4.1.1 |Personnel Completing Questionnaires |
|4.1.2 |Some Prior Knowledge of AS |
|4.1.3 |Source of Knowledge |
|4.1.4 |Prior Knowledge |
|4.1.5 |Did Staff Feel Adequately Prepared |
|4.1.6 |Source and Effectiveness of Prior AS Knowledge |
|4.1.7 |Evaluation of Staff Development Delivered by the Author |
|4.2.1 |Is AS Increasing |
|4.2.2 |Age of Students |
|4.2.3 |Student Gender |
|4.2.4 |Student Ethnicity |
|4.2.5 |Route Into HE |
|4.2.6 |Student Outcome |
|4.2.7 |Progression of Students |
|4.3.1 |Course Distribution |
|4.3.2 |Science-Arts Distribution-Male |
|4.3.3 |Science-Arts Distribution-Female |
|4.3.4 |Course Distribution Arts |
|4.3.5 |Course Distribution-Science |
|4.3.6 |Courses Male |
|4.3.7 |Courses Female |
|4.3.8 |Arts Courses-Gender Comparison |
|4.3.9 |Science Courses-Gender Comparison |
|4.4.1 |First Impressions |
|4.4.2 |Changes Over Time |
|4.4.3 |Details of First Impressions |
|4.4.4 |Details of Changes Over Time |
|4.4.5 |Student Challenges Described by Students, Mothers and Staff |
|4.4.6 |Social Challenges |
|4.4.7 |Mixed Challenges |
|4.4.8 |Academic Challenges |
|4.5.1 |What Sort of Support is Available in Your Institution? |
|4.5.2 |Staff Views of Adequacy of Support |
|4.5.3 |Effective Social Strategies |
|4.5.4 |Effective Practical Strategies |
|4.5.5 |Effective Academic Strategies |
|4.5.6 |Living Arrangements |
|4.5.7 |Outcomes-Living Arrangements |
|4.5.8 |Ineffective Social Strategies |
|4.5.9 |Ineffective Practical Strategies |
|4.5.10 |Ineffective Academic Strategies |
|4.6.1 |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)
4.1.1
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4.1.2
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4.1.3
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4.1.4
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4.1.5
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4.1.6
4.1.7
4.2.0
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4.2.1
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4.2.2
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4.2.3
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4.2.4
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4.2.5
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4.2.6
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4.2.7
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4.3.1
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4.3.2
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4.3.3
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4.3.4
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4.3.5
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4.3.6
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4.3.7
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4.3.8
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4.3.9
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4.4.1
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4.4.2
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4.4.3
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4.4.4
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4.4.5
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4.4.6
4.4.7
4.4.8
4.5.1
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4.5.2
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4.5.3
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4.5.4
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4.5.5
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4.5.6
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4.5.7
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4.5.8
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4.5.9
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4.5.10
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4.6.1 Brief Summary
|Reference |Title |Summary |
|4.1.1 |Personnel Completing |Academic Science staff are the largest group, probably reflecting high numbers|
| |Questionnaires |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. |
|4.1.2 |Some Prior Knowledge of AS |59% the practitioners had some prior knowledge. |
|4.1.3 |Source of Knowledge |Popular media and family contacts were the most common source of knowledge. |
|4.1.4 |Prior Knowledge |Social difficulties /rigid behaviour were most frequently cited issues by |
| | |practitioners,16 f commented on suspected undisclosed AS. |
|4.1.5 |Did Staff Feel Adequately Prepared|59% felt inadequately prepared. |
|4.1.6 |Source and Effectiveness of Prior |The conference held by the author was the most common source of information, |
| |AS Knowledge |and was judged to be effective. |
|4.1.7 |Evaluation of Staff Development |86% said this was excellent. |
| |by Author | |
|4.2.1 |Is AS Increasing |57% feel that AS (including undiagnosed AS-14%) is increasing. |
|4.2.2 |Age of Students |55% are below 20. |
|4.2.3 |Student Gender |82% are male. |
|4.2.4 |Student Ethnicity |96% are white British. |
|4.2.5 |Route Into HE |60% arrived via the A Level route. |
|4.2.6 |Student Outcome |8% failed. |
|4.2.7 |Progression of Students |42% progressed to a higher qualification. 33% had difficulty gaining |
| | |appropriate employment. |
|4.3.1 |Course Distribution |74% science. |
|4.3.2 |Science-Arts Distribution-Male |84% of male students were on science courses. |
|4.3.3 |Science-Arts Distribution-Female |35% of female students were on science courses. |
|4.3.4 |Courses -Arts |Art / design and history are preferred arts courses. |
|4.3.5 |Courses-Science |Computers / maths are preferred science courses. |
|4.3.6 |Courses Male |Computer science is the most frequent choice for males, followed by maths. |
|4.3.7 |Courses Female |BA (unspecified) is the most frequent choice for females, followed by art and |
| | |design. |
|4.3.8 |Arts Courses-Gender Comparison |The preferred arts course for males is history, for females BA, unspecified, |
| | |and followed by art / design. |
|4.3.9 |Science Courses-Gender Comparison |The preferred science course for males is computers, for females, science |
| | |–other (two choosing nutrition). |
|4.4.1 |First Impressions |60% of staff first impressions were negative. |
|4.4.2 |Changes Over Time |59% remained negative. |
|4.4.3 |Details of First Impressions |Anxiety, challenging behaviour and communication problems were most frequently|
| | |noted. |
|4.4.4 |Details of Changes Over Time |Staff commented on getting used to students, but noted anxiety, depression and|
| | |obsessive behaviour increasing over time. |
|4.4.5 |Student Challenges Students/ |Social challenges were noted most frequently. |
| |Mothers/ Staff Comments | |
|4.4.6 |Social Challenges |Interacting with peers and coping with change were most frequently noted for |
| | |both genders. Self-help skills were problematic in males. |
|4.4.7 |Mixed Challenges |Organisation, anxiety and coping with change were most frequent for males and |
| | |females. |
|4.4.8 |Academic Challenges |Applying knowledge and accepting help was note most often for males and |
| | |females. |
|4.5.1 | Support Available. |54% of support included DO and others |
|4.5.2 |Staff Views of Adequacy of Support|79% did not know whether support was adequate. Students making ‘excessive |
| | |demands’ on service was described by some practitioners. |
|4.5.3 |Effective Social Strategies |Clubs and Societies were the most effective, and some students described back |
| | |up from clergy.. |
|4.5.4 |Effective Practical Strategies |Living at home with parents was the most effective. |
|4.5.5 |Effective Academic Strategies |Dyslexia-study skills were most effective. |
|4.5.6 |Living Arrangements |52% lived with parents. |
|4.5.7 |Outcomes-Living Arrangements |3% of students who lived at home were unsuccessful compared to 8% who lived in|
| | |halls. |
|4.5.8 |Ineffective Social Strategies |Mentors without clear boundaries were most ineffective. |
|4.5.9 |Ineffective Practical Strategies |Assuming self help skills was most ineffective. |
|4.5.10 |Ineffective Academic Strategies |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 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 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.
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 study-
The 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.
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 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.
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)
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 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.
'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).
'…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 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 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 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 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)
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?
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?
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 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.
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?
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.
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.
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.
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, 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.
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-----------------------
Source and Effectiveness of Prior AS Knowledge
Source
Relative Proportions of Staff
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
Author's
Conference
Discussion
with Staff /
Assessors
Internet
Nado /nnac
Email Lists
Part of
Course
Parents'
Advice
Book
(Harpur /
Attwood)
NAS /
Assessment
Literature
Students'
CVs etc
[pic]
[pic]
[pic]
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