Title:
Students with Asperger’s Syndrome in
higher education.
Citation:
Paper:
The purpose of this paper is to explore a contemporary issue
which is impacting upon the higher educational sector: such an issue is the
increase number of students with a diagnosis of Asperger’s Syndrome and High
Functioning Autism navigating the transition from secondary school and
attending higher education. Although both these disorders are now placed within
the wider Autism Spectrum Disorder (ASD) it will be argued they remain an
important subset as many students may have received a diagnosed under the
previous regime and identify as such (American Psychiatric Association, 1994, 2013). Attending university – as
well as being an educational experience – is a social phenomenon and hence this
paper will take a constructionist interpretivist epistemological approach (Halperin & Heath, 2012; Matthews & Ross,
2010; Moses & Knutsen, 2007). A
constructionist approach – as a posed to the purist naturalist approach – takes
account and recognises that the social researcher will bring their own meaning,
understanding and experience to any research: having also taught, tutored and
mentored others with this diagnose my experiences will naturally influence this
analysis (Matthews & Ross, 2010).
The
paper will begin with a discussion of the historical context of Asperger’s
Syndrome including an exploration of the prevalence of the syndrome in general
and higher education in particular. This
will be followed by an exploration of the impact the syndrome has on students –
both the student with the diagnose and their peers – which will cover issues
such as social, sensory and self-care issues including strategies higher
education institutions have used to assist with these impacts. The paper will conclude
with a discussion of the impact the issues have had on teaching pedagogy.
Historical context and Prevalence of Asperger’s Syndrome
Asperger’s
Syndrome has its origins in the work of an Austrian physician Dr Hans Asperger
who wrote in the aftermath of the Second World War about his observations in
treating boys with simular traits: impaired social interactions coupled with
repetitive and near obsessed focus on hobbies and interests (Highlen, 2016). The work of Asperger was lost in the chaos of
the time: his work was ‘rediscovered’ when it was published in English in the
1980s and finally recognised as a disorder by the American Psychological
Association (APA) in 1994 (American Psychiatric Association, 1994; Highlen, 2016; Luckett &
Powell, 2003).
Although initially recognised in its own
right, Asperger’s Syndrome was subsumed into the wider ASD in the most recent
APA manual due to similarities in diagnostic criteria (American Psychiatric Association, 2013; Glennon, 2001; Highlen, 2016).
Nevertheless, Asperger’s Syndrome (and High Functioning Autism) remains popular
in describing people who fall within the ‘mild’ end of the ASD spectrum: those
with above average intelligence and focused interests with no significant delay
in language or cognitive development (Barnhill, 2014; Gelbar, Smith, & Reichow, 2014; Norris & Dixson,
2011).
Nevertheless, each person follows their own unique trajectory based upon their
individual strengths and weaknesses and hence it is possible only to generalise
in broad terms (Gelbar et al., 2014; McLeod & Harrison, 2013).
Norris and Dixson (2011, p. 39) argue that in many ways
students with Asperger’s Syndrome are ‘twice exceptional’ in “… that they
compensate so well for processing deficits is a credit to their intelligence …”
and their overall prospects to achieve success (See also McLeod & Harrison, 2013).
This incorporation of Asperger’s Syndrome within the wider
ASD category makes determining the prevenance of the disorder somewhat
difficult. Around one percent of the population have a diagnosis of ASD with
many falling within the ‘high functioning’ above normal intelligence category
which previously would have led to a diagnosis of Asperger’s Syndrome: this
number has been increasing (Gelbar et al., 2014; Lorenc et al., 2018).
In studies assessed as part of this research around seven to eight percent of
the student population identify as having a disability in their first year of
studies in higher education: only a small proportion of which have Asperger’s
Syndrome or the wider ADS traits (Barnhill, 2014; Knott & Taylor, 2013).
Barnhill (2014) as attributed such an increase to the growth of
antidiscrimination laws and also the general widening of access (See also Australian Human Rights Commission, 2016; Knott & Taylor,
2013). This is further complicated due to the
trajectory of the disorder in that many people are often diagnosed in latter
childhood and into adulthood as a consequence they may come to an institution being
newly diagnosed and some not even having received a diagnosis (Barnhill, 2014; Glennon, 2001; Norris & Dixson, 2011).
Moreover, even those with a diagnose may
choose not to make a disclosure due to fears of segmentation and
discrimination.
This section has outlined the background to Asperger’s
Syndrome and the prevalence of it within the community: it will now conclude by
discussing the reason for classifying it as a contemporary issue for higher
education. In a nutshell this is because due to supports provided to students,
with or without a diagnosis, through their secondary education many are in a
position to be admitted to higher education based upon their excellent academic
scholarship (Barnhill, 2014; Highlen, 2016). Therefore, educators have a duty
to endure that they succeed. However, given these developments it is somewhat
concerning there appears to be a consensus among the literature consulted that
there is a significant ‘gap’ in the
research for people with Asperger’s Syndrome other than children (Barnhill, 2014; Gelbar et al., 2014; Lorenc et al., 2018).
It is this very gap in knowledge which justifies this issue as one worthy of
contemporary scholarly research.
Impact of Asperger’s Syndrome on students
When looking at the impact Asperger’s Syndrome has on
students (the stakeholder chosen for the focus of this paper) it is important
to highlight at the beginning that this is made up of two distinct groups: the person
with the diagnosis and their wider peer group. This section will deal with each
group separately: beginning by discussing the individual and then widening that
discussion to the student population as a whole. Asperger’s Syndrome very much
effects social interactions (the inability to read social cues) and attention
deficits (sustaining, filtering, shifting and remembering) (Madriaga, 2010; Norris & Dixson, 2011). As previously outlined, no
two people’s experience with Asperger’s Syndrome are alike (Glennon, 2001). Nevertheless, in reviewing the literature there
does seem to be three distinct areas where the syndrome impacts on individuals
within this higher education sector: mental health, accessibility and
self-care. These are not stereotypical disability manifestations as in many
cases a person with Asperger’s Syndrome, Glennon (2001)
explains, can outwardly appear ‘normal’.
Madriaga (2010, p. 40) highlights that “… physical
access into buildings and spaces have always been at the forefront of
discussions when exploring barriers if disabled students in higher education
…”; however, for the student with Asperger’s Syndrome physical access to
facilities is not a problem. One of the characteristics of Asperger’s Syndrome
is hypersensitivity to environmental stimuli such as noise, light and sound (Gelbar et al., 2014). This can lead to students self-excluding
themselves from such places as university cafés, bars/pubs and increasingly
even the library to avoid sensory overload (Knott & Taylor, 2013; Madriaga, 2010). Madriaga (2010, p. 48) argues that “having to
exclude oneself from certain university spaces due to institutional
misrecognition of one’s impairment is not reflective of inclusive practice …”
as universities under discrimination legislation must take positive steps to
eliminate such circumstances. Given that interchanges in such places are as
much a part of the university experience as study itself. Although the context
which Madriaga was writing was the United States, such ‘reasonable adjustments’
are a hallmark of discrimination law in Australia (Australian Human Rights Commission, 2016).
“Once a student has arrived on campus, the social demands
quickly become apparent...” (Glennon, 2001, p. 186). This statement is quite
clear to see when one looks at the long list of events and activities
associated with orientation week at most institutions. These are activities, Madriaga (2010, p. 48) argues, for many students are
the “… springboards for social relationships …” which can be inaccessible for
someone with Asperger’s Syndrome. Lack of ability to read and process social
interactions is a typical characteristic of someone with Asperger’s Syndrome and
also something which can preclude them from these important events in their
student life (Glennon, 2001; Knott & Taylor, 2013; Madriaga, 2010).
However, some institutions have found that structured activities tailored to
the needs of people with Asperger’s Syndrome -- such as societies focusing on
games, Anime, computers and history --
can be a useful way to facilitate the formation of a peer network
amongst this cohort (Highlen, 2016; Knott & Taylor, 2013; Madriaga, 2010).
However, as Madriaga (2010) highlights, care needs to be taken in planning
and developing such activities so as not to partition the students from their
peers. Lack of these supports can see students increasingly isolating
themselves, becoming increasingly lonely,
which can lead to a spiral of mental health issues (Madriaga, 2010).
So far this section has examined the impacts which Asperger’s
Syndrome has on those with a diagnose. However, there is another group of
students who it would be remiss not to mention: their peers. With social
relationships being problematic in a place where they are a central part of
academic live of an undergraduate this can place undue stress on all concerned
if adequate consideration is not undertaken early (Gelbar et al., 2014; Knott & Taylor, 2013).
As tertiary institutions in a time of austerity are turning more and more to
peer mentoring this can be somewhat problematic if students are confronted with
some of the more challenging reactions students with Asperger’s Syndrome may
present (McLeod & Harrison, 2013). In implementing a strategy
to overcome a crisis situation in a residential college at the Australian
National University, McLeod and Harrison (2013) found that the best approach
to this type of situation is to bring the peers in as partners but not to
require them to actually be involved in any responses. The program which they
developed aimed to “… transition students … into university life. … It hopes to
assist the student to develop the skills required to successfully engage and
participate in academic and accommodation environments…” (p. 38). It is argued
that developing such a transition program with support from practitioners is as
beneficial to the student’s peers as it is to the individual and help with
inclusion.
Impact of Asperger’s Syndrome on pedagogy
The final area to be examined is the impact of having
students with Asperger’s Syndrome has on pedagogy: although this paper up until
now has focused upon the impact on students rather than the institution it is
argued that a change in pedagogy has a direct impact on students. After all the
prime purpose of their university engagement is to learn through the delivery
of the pedagogy. Although it is conservable that Asperger’s Syndrome can have
numerous impacts pedagogy a literature survey highlights two key areas: adjustments/supports
and delivery.
It is outlined by Glennon (2001),
to be accepted into university it is highly probable that the student will have
received supports and adjustments throughout their educational career. In some
respects these supports may have been so successful that the school environment
becomes an safe place (Lorenc et al., 2018). However, entering higher education can be
what Lorenc et al. (2018, pp. 654-655) describe as going off a “…
‘service cliff’ when eligibility for these services ceases abruptly…” which for
some can be an extremely frightening experience (Glennon, 2001). McLeod and Harrison (2013) further highlight that such a
‘service cliff’ can result in a crisis which can escalate to such an extent
that the whole cohort is affected (as discussed in the previous section).
However, although students with Asperger’s Syndrome would benefit from traditional
adjustments – such as alternative means of demonstrating competence – their
needs are somewhat unique in comparison with the traditional approach to
accommodating learning difficulties (Barnhill, 2014; Highlen, 2016). This is because the adjustments
required relate to social interactions: the heart of an Asperger’s Syndrome
diagnosis. Just providing alternative assessment methods can undermine some of
the ‘job ready’ skills which have been scaffolded into the paedology in
activities such as most group work. With this in mind, Madriaga (2010) argues that there needs to be a rethink in how
such accommodations are made with more emphasis on supporting students to
participate in social interactions rather than find alternatives to it and
hence avoid ‘ghettoisation’. The literature supports this notion that the best
approach to accommodating students with Asperger’s Syndrome is to provide such
supports (Barnhill, 2014; McLeod & Harrison, 2013).
Nevertheless, there are impacts on the manner in which
content is delivered that can effect students with Asperger’s Syndrome. This is
compounded by the manner in which the student has progressed through their
education: the gifted or special needs scheme. Norris and Dixson (2011) argue that this can very much
effect how they have experienced learning with their strengths being developed
in the former whilst their deficits the focus of intense intervention in the
latter. Without the focus and development of their strengths they might in fact
appear disinterested and tuned out whist it is that they don’t have the skills
to absorb what is going occurring (Glennon, 2001). Barnhill (2014) is forthright in arguing that there needs to be
a change to education to adjust to such diverse skills. As has been a common
theme throughout this paper, adjustments for this cohort need to go further
than traditional access. There is consensus in the literature that the
classroom needs to be welcoming of diverse styles of expression and
particularly the provision of structure (Barnhill, 2014; Glennon, 2001; Highlen, 2016).
Such an approach has multiple benefits across the whole cohort: for instance
making their peers more appreciative of the diversity they will encounter
within the workforce. In essence, very much promoting an essential ‘job ready’
attribute. Nevertheless, there is also a common theme that the studies this are
based upon have relatively low sample sizes, lack robust methodology and are
part of an area which requires wider research (Knott & Taylor, 2013; Lorenc et al., 2018; Madriaga, 2010).
Conclusion
This paper has examined the impact of growing numbers of
students with Asperger’s Syndrome – diagnosed, undiagnosed and freshly
diagnosed -- attending tertiary institutions. Asperger’s Syndrome is now a
subset of ASD with its main characteristics effecting social development and
hence a student might be academically gifted but not be able to reach their
full potential without supports. Unlike the traditional supports of access and
learning support, Asperger’s Syndrome requires a new approach which a focus on
social and life skills which are in some respects an extension of the ‘job
ready’ skills now being embedded in pedagogy. This paper focused on students
and it should be remembered that Asperger’s Syndrome affects both the
individual and their peers due to the disruptions which can occur. Therefore,
it is important that pedagogy be adapted so as to support students with
Asperger’s Syndrome without removing the embedded job ready skills: this requires
academic and disability support staff to work closely together. Such support
has a benefit for the wider cohort as it will expose them to the diversity of
the workforce. Finally, despite the impact Asperger’s Syndrome on the lives of
students there is a significant gap in research with the majority of studies
with a strong scientific methodology focused on children.
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