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Managing Asperger’s Syndrome in
Third Level Education
Claire Gleeson, Sarah Quinn and Clodagh Nolan
University of Dublin Trinity College
Unilink Service
June 2010
Gleeson C., Quinn S., & Nolan C.
Unilink, University of Dublin, Trinity College.
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Abstract
Trinity College, like other third level institutions have seen a rise in the number of students
accessing the university with disabilities. In particular one of the greatest increases in
student numbers attending university are those individuals with Asperger’s Syndrome (AS).
Over the past three years the number of referrals for students with Asperger’s Syndrome to
the Unilink Service has quadrupled.
As a college bound student with Asperger’s Syndrome enters into the academic and social
world of third level education, they are presented with a myriad of challenges to tackle and
master. The Unilink Service endeavours to provide practical support in managing the
challenges and daily occupations of student life.
This workshop will provide a review of the literature in relation to the difficulties that
individuals with Asperger’s Syndrome encounter. Furthermore the growing and complex
needs of these university students with AS will be discussed. Current approaches to
support these students with Asperger’s Syndrome will be detailed and finally students’
progress and perspectives will be explored.
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Contents
Introduction
What is Asperger’s Syndrome?
Asperger’s Syndrome and the University Experience
Third Level Support for Students with Asperger’s Syndrome
Profile of Students with Asperger’s Syndrome Utilising the Unilink Service
One Student’s Journey through the Unilink Service
Student-Outcomes within the Unilink Service
Future Directions for the Asperger’s Syndrome Strand of Unilink
Conclusion
References
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Introduction
The number of students in Higher Education with a registered disability has risen
increasingly over the past number of years (AHEAD, 2008). This increase may be attributed,
in part, to the legislation and access policies (Equal Status Acts, 2000-2004; University Act,
1997; Disability Act, 2005 (Government of Ireland)) now in place, as well as the introduction
of Disability Services in third level institutions across the country. Trinity College, like other
third level institutions, have seen a rise in the number of students accessing the university
with disabilities. One of the student groups that has increased most significantly are those
with Asperger’s Syndrome (AS) (Nolan, Quinn, & Gleeson, 2009). This upward trend is likely
to continue as the identification of AS increases (Wing & Potter, 2002) and access to early
interventions improve.
What is Asperger’s Syndrome?
Asperger’s Syndrome (AS) is a pervasive developmental, neurological disorder (Wing &
Gould, 1979; Baron-Cohen, Wheelwright, Stone, & Rutherford, 1999) identified by Hans
Asperger, a Viennese paediatrician over fifty years ago (Asperger, 1944). He described
children in his practice that lacked non-verbal communication skills, demonstrated limited
empathy with their peers, and were physically clumsy (Frith, 1991). Asperger’s Syndrome is
at the higher end of the autistic spectrum disorders and is classified as a mental health
disorder by the American Psychiatric Association (APA) (APA, 2000).
Asperger’s Syndrome can be first diagnosed early in childhood, although individuals are
often diagnosed later in life, during teenage and adolescent years (World Health
Organisation (WHO), 2006). Individuals with AS are usually of average or above average
intelligence. Asperger’s Syndrome affects individuals in different ways. Individuals with AS
are said to exhibit characteristics that fall into a triad of deficits, these deficits include
difficulties with 1. Verbal and non-verbal communication; 2. Socialisation and developing
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relationships; 3. Flexibility of thought processes and imagination (APA, 2000). These
difficulties are said to impact on a person’s ability to function.
Language &
Communication
Social and Emotional
Diffic
Asperger’s Syndrome
Flexibility of Thought
(Imagination)
(
Individuals with Asperger’s Syndrome also tend to exhibit repetitive, stereotypical
behaviours and can have an intense preoccupation with narrow subjects, activities and
interests (APA, 2000), which may lead an individual with AS to demonstrate exceptional
abilities and/or great expertise in a particular area (Morrison, Sansoti & Hadley, 2009).
Asperger’s Syndrome differs from other autism spectrum disorders by its relative
preservation of linguistic and cognitive development. Although not required for diagnosis,
physical clumsiness and atypical use of language are frequently reported (McPartland & Klin,
2006; Baskin, Sperber & Price, 2006).
Many individuals with AS often have difficulties with sensory processing and regulation of
affect and arousal. They may get overwhelmed by too much sensory information in their
environments. Although to date, sensory processing difficulties have not been included
within the official diagnostic criteria.
Research also shows that individuals with Asperger’s Syndrome have poor organisational
skills (Adreon & Durocher, 2007) and may have increased levels of anxiety, stress and also
depression. These factors can further impact on their ability to engage with their
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activities/occupations and the environments in which these occupations take place (BaronCohen, Wheelwright, Stone, & Rutherford, 1999; Fujikawa, Kobayashi, Koga, & Murata,
1987; Whitehouse et al, 2009).
The exact cause of Asperger’s Syndrome is unknown, and is still being investigated, although
research suggests cause stems from a combination of genetic and environmental factors
(McPartland & Klin, 2006; National Autistic Society, 2010). Internationally, Asperger’s
Syndrome is more common in males than females; with an estimated ratio of nine to one
males to females in Ireland (ASPIRE, 2009). The identification of AS has not been exclusive to
any one social background, nationality, culture or creed. In Ireland it is estimated that
several thousand people have Asperger’s Syndrome (ASPIRE, 2009).
Asperger’s Syndrome and the University Experience
There are many characteristics of AS that can be considered as personal strengths and can
enable individuals to achieve high levels of competency and mastery in their areas of
interest or productive occupations. It is suggested that famous people that have Asperger’s
Syndrome include W.B. Yeats, Albert Einstein and Isaac Newton; it is thought that AS has
actually enhanced these people’s capacity for success (Lyons & Fitzgerald, 2005; Walker &
Fitzgerald, 2006).
The university environment can nurture student’s individual strengths and can foster the
development of special interests. It provides opportunities for students to grow on a
personal, social and academic level. By third level students are beginning to become more
independent; university hold prospects to make new and diverse friendships, to join
societies, increase exposure to new activities, and develop a stronger sense of self, values
and interests.
However, for some students these new and exciting opportunities present as challenges.
Madaus (2005) has commented that third level education operates a complicated system
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that is very different to that which students have experienced in second level. The transition
from a structured, predicable environment in secondary school to the freer environment of
higher education is likely to present particular challenges to students with AS (MacLeod &
Green, 2009). Typically, university offers less prescribed (no homework) and rote learning,
less supervision and demands more in terms of independent study and critical thinking. The
social norms and expectations in third level are not explicit in comparison to the stated rules
of behaviour and code of dress required at second level. The infrequent contact hours and
non-obligatory attendance can impact adversely on the ability of students with Asperger’s
Syndrome to make friends and connect with the college community. On a personal level,
new living circumstances can present demands on the student who moves away from home
where self-management and domestic activities must be addressed.
Although not all students with Asperger’s Syndrome experience challenges in third level
education, many students will encounter various difficulties with social functioning.
Therefore, they may have difficulty making friends, establishing relationships, speaking out
in lectures and tutorials, requesting information, joining societies, attending social
functions, having social contact outside class hours, establishing a peer support network and
being assertive. Additionally, many students with AS experience difficulty with executive
functioning skills. This impacts on their ability to organise and manage their time (and thus
meet assignment deadlines), prioritise activities, structure and plan assignments, and set
goals. Students may also experience issues with the sensory environment of college; this
can be due to poor sensory processing and regulation. They may experience poor
concentration within the lecture or tutorial room, become easily distracted by noise and the
individuals within the environment and may result in the student becoming reluctant to
attend lectures and tutorials. Students may also experience difficulty with orientation of the
college campus and facilities and some struggle to negotiate the systems within college,
such as; the library process and the administrative policies.
Some of these issues can escalate into feelings of being overwhelmed and the inability to
cope with these demands. Students with AS tend to experience higher levels of stress and
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anxiety compared to their peers within this environment (Adreon & Durocher, 2007).
Mental health difficulties in individuals with AS have been attributed to social alienation; yet
they have been found to want and benefit from social support (Jones, Zahl, & Huws, 2001).
Third Level Support for Students with Asperger’s Syndrome
The support needs required for individuals with Asperger’s Syndrome as they enter into
third level education are complex and highly idiosyncratic and are at odds with the student’s
apparent capability (MacLeod & Green, 2009). The importance of supports for individuals
with AS in primary and secondary level education are well recognised but there appears to
be less research and services at third level education (Clark, 2003). In order to cater for the
needs of these students as they enter into a different and complicated environment of third
level, we need to be ready and willing to respond effectively to the needs of these students
with Asperger’s Syndrome.
Trinity College Dublin offers students with mental health difficulties a unique occupational
therapy service, known as Unilink. Unilink is a collaboration between the Discipline of
Occupational Therapy and the Disability Service in Trinity College. The Unilink Service was
established in 2004 by Clodagh Nolan, a lecturer in the Discipline of Occupational Therapy in
response to a need to provide practical support for students with mental health difficulties;
such as Depression, Schizophrenia, Asperger’s Syndrome (AS) and Attention Deficit
Hyperactivity Disorder (ADHD) in managing the day-to-day things that students need and
want to do both academically and socially, in order to achieve their full potential and
complete their studies and go on to become productive members of society (Nolan, Quinn &
Gleeson, 2009). Since 2006 a designated occupational therapist was employed to work
specifically with students with AS in order to support their unique needs and to develop a
specialist AS strand within the Unilink Service that caters specifically for these students.
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Although services for people with disabilities at third level have improved in recent years,
there remains a long way to go before the types of comprehensive support required by
people with AS are in place within the tertiary sector. ASPIRE, the Irish Asperger’s Syndrome
Association highlight in their consultation to the National Strategy for Higher Education
(ASPIRE, 2009) that the Unilink Service is very useful in supporting students with Asperger’s
Syndrome, however they indicate that this support should be provided and made available
by all third level institutions in Ireland.
Profile of Student’s with Asperger’s Syndrome Utilising the Unilink Service
This section of the paper outlines the number of students with Asperger’s Syndrome both
nationally and locally within the Unilink Service.
This table below taken and adapted by the Higher Education Authority (HEA) (HEA, 2010)
highlights the number of students receiving funding for a diagnosis of Autistic Spectrum
Disorder over the past three years. The table identifies the high increase in the number of
students with Asperger’s Syndrome utilising available funding in third level education.
Table 1. Total number of beneficiaries of the Fund for Students with Disabilities 2006 2008 in Irish Higher Education Institutions
Year
2006-07
2007-08
2008-09
Number of Students
with Autistic
Spectrum Disorder
6
14
42
Mirroring this general increase the number of students attending Unilink, with a diagnosis of
Asperger’s Syndrome, has grown steadily over the past four years and reflects the higher
prevalence of AS in males.
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Year
Males
Females
Total
2009-10
19
1
20
2008-09
13
1
14
2007-08
5
0
5
2006-07
3
0
3
Table 2: Number of students with Asperger’s Syndrome in TCD utilising the Unilink Service
by gender and across time
Many students with AS utilising the Unilink Service have dual diagnoses meaning that they
not only experience difficulties associated with their diagnosis of AS but also additional
difficulties due to other mental health disorders, such as ADHD, depression etc. Specifically,
no students had diagnoses in addition to that of AS in 2006-08, however, five students with
AS had a dual diagnosis in 2008-09 and this rose to seven students in 2009-10.
With regards to the subject areas studied by students with AS, Unilink has found that in the
last two years more students with AS have emerged from the Faculty of Engineering,
Science and Mathematics than other faculties. This may be due to the appeal of the factbased math and science courses on offer in this Faculty.
Year
Faculty of Arts,
Humanities & Social
Science
2009-10
2008-09
2007-08
2006-07
8
5
4
3
Faculty of
Engineering,
Mathematics &
Science
12
9
1
0
Faculty of Health
Sciences
0
0
0
0
Table 3: TCD Faculty distribution of students with Asperger’s Syndrome utilising Unilink
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In 2009-10, the number of students in Junior Freshman (first year) utilising the Unilink
Service increased considerably. While this may be attributed to the rising numbers of
students with disabilities attending third level and a general increase in individuals being
identified with AS, a procedural change to the referral process may also contribute to this
increase. Following the high number of senior freshman (second year students) who began
using Unilink in 2008 (an eight-fold increase on the previous year, see Figure 1) a decision
was made by the Disability Service and Unilink to provide students with Unilink,
occupational therapy support from the outset of their university career, so referrals are now
made on entry to college to Unilink.
Figure 1: The number of students with AS utilising Unilink according to college standing
9
Number of Students
8
7
Junior Freshman
6
Senior Freshman
5
Junior Sophister
4
Senior Sophister
3
Postgraduate
2
1
0
2009-10
2008-09
2007-08
2006-07
As occupational therapists the Unilink Service is concerned with the student’s engagement
and performance in college occupations (such as studying and socialising) and their capacity
to perform their student role. Using a myriad of activities and strategies the occupational
therapist within Unilink will support the student with AS to set and attain occupational
related goals. Goals students have set in the past have included the development of
academic, time management and organisational skills; anxiety and illness management; life
style design and progress in the area of social relationships. Intervention strategies are
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typically practical, for example, preparing timetables with students so that they know what
to do, where and when; role-playing social situations; and using writing techniques to
overcome procrastination, and are employed according to need. To illustrate the type of
support Unilink may offer students with AS, an example of a student’s story is shared below.
One Student’s Journey through the Unilink Service
Student: Billy is a 21 year old student studying in college. At 18 years old Billy made the
transition from secondary school to university.
Study: Second Year; Faculty of Engineering, Mathematics and Science
Reason for Referral: Referred for Unilink assessment and support in managing his role as a
student.
Background Information gleaned from the Initial Interview: Billy attended his first Unilink
session after being unsuccessful in meeting the demands of his college course. He did not
have his course assignments and projects handed in on time and also found it difficult to
prepare for exams and as a result failed his end of year exams. Billy was not attending 60%
of his lectures and tutorial classes. Billy also really wanted to fit in and wanted to be
involved in college life but not in the way he had done in his previous year, as he spent a lot
of time attending society events.
Areas identified/Goals:
1. To meet course demands by submitting essays and assignments on time.
2. To develop organisational and time management skills to better manage his role as a
student.
3. To develop balanced routines that incorporate academic and social occupations.
4. To develop skills in essay writing and exam technique.
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Intervention strategies/work done with Joe:
1. Established healthy and balanced routines through the use and development of
timetables to incorporate study time, social aspects of his life and leisure pursuits.
2. Billy learned how to prioritise different occupations, set goals and achieve the goals
established.
3. Practical support provided to help Billy to start assignments; support provided for
researching, planning and structuring essays/assignment projects.
4. Monitored Billy’s involvement and engagement in societies.
5. Billy learnt and practiced deep breathing exercises that helped manage his stress and
anxiety levels.
6. To attend all lecture and tutorial classes.
Outcome:
1. Billy submitted all assignments and projects on time in comparison to not submitting
any assignments the previous year.
2. Billy sat all his exams and successfully passed the year.
3. Billy is now better able to manage the different occupations that he must do
throughout the day; both academic and social.
4. Billy developed and has implemented all organisational and time management skills
into his daily routine.
5. Billy’s attendance improved dramatically and attended all lectures and tutorials in
his repeat year.
6. Billy is continuing to receive on-going input from the AS strand of the Unilink Service.
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Student-Outcomes within the Unilink Service
While students with AS may share common diagnostic traits how these impact on individual
students vary. Central to Unilink’s success in working with these students is a recognition of
the individuality of each student’s case – students’ concerns, expectation of college, needs
and desires differ as a function of many factors including the student’s own abilities and
strengths, their past experiences in education, their support network, and their living
conditions. Similarly, a student’s progress through third level may be measured in a variety
of ways – quantitatively, by means of end of year scores and progression; qualitatively, by
asking students about the quality of their life in college. In Table 4 we present student
outcomes measured according to their academic progression within the university.
Year
Progressed-rose
with year
Failed and
Repeated
Graduates
Supported
withdrawal
from college
2009-10
Unknown at
present
Unknown at
present
Unknown at
present
Unknown at
present
2008-09
11
0
0
3
2007-08
4
1
1
0
2006-07
2
1
0
0
Table 4: Students’ progression in university according to year
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Future directions for the Asperger’s Syndrome strand of the Unilink Service
As an evidence-based service Unilink engages in ongoing evaluation. Life balance and
leisure engagement have emerged as an identified need for this group of students.
Consequently, a group intervention focusing on leisure engagement will be piloted in 201011. This group will examine and explore the past and present leisure interests and
occupations of individuals with Asperger’s Syndrome in third level education and to explore
the opportunities for increasing the scope for meaningful leisure engagement and
participation within the university environment using a collaborative group approach with
the students.
Conclusion
The International Classification of Functioning identifies participation in occupations as the
ultimate outcome for individuals with disabilities (WHO, 2001) and similarly engagement in
meaningful occupations to support participation within the context of the client is the aim
and focus of all occupational therapy intervention (AOTA, 2008).
Given the nature of the third level social, institutional and physical environment and the
typical characteristics / impairments of individuals with Asperger’s Syndrome, many are
likely to face certain challenges when coming to college.
Tailor-made support services that understand the particular and individual difficulties of
students with Asperger’s Syndrome are required to facilitate students’ participation in all
aspects of college life, and enable students realise their abilities so that they can develop
both personally and academically.
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Gleeson C., Quinn S., & Nolan C.
Unilink, University of Dublin, Trinity College.