A Note about Autism
Raymond Peart, PhD candidate, Faculty of Education
I am submitting this piece as a PhD Candidate from the Faculty of Education. It has been derived from my comprehensive proposal.
To this day, there are many more questions than answers surrounding autism. Two distinct strands of research exist, one focussed on the causes and symptomology of autism and the other focused on living with autism. Historically, autism has evolved from being considered a singular disorder defined by a set of impairments to a range of disorders that are very similar to one another and so close in nature that they exist along a spectrum of variation referred to as Autism Spectrum Disorder (ASD) (Ha, Whittaker, Whittaker, & Rodger, 2014; Lauritsen, 2013).
Research is converging toward the view that autism is a neurological disorder (Baker, 2007; DiCicco-Bloom, 2006; Folstein, 2006) that can occur in pre- and post-natal brain development (Schrieken et al., 2013; Yau et al., 2015). The scope of causation has broadened such that environmental factors such as pollution and chemical exposure are seen as having a role in autism causation (Gong et al., 2014). The reality is that there is no one standard method to determine or diagnose the disorder in children and/or adults (Corsello, Akshoomoff, & Stahmer, 2013; Lauritsen, 2013).
However, emerging sociological perspectives locate autism more broadly outside the medical model (Jaarsma & Welin, 2012; Kapp, Gillespie-Lynch, Sherman, & Hutman, 2013). Priority is given to how society responds to and treats individuals labelled as autistic. Other sociological perspectives have shed light on how individuals with autism are clustered or excluded within or from pockets of society, particularly in areas such as employment and education (Mavranezouli et al., 2014; Chiang, Cheung, Li, and Tsai, 2013; Wilczynski, Trammell, & Clarke, 2013). Some of these challenges are chronicled in an extensive report conducted by the Toronto Star in The Autism Project (Cruickshank, 2013) in which the complexities of the lives of people with autism serve to emphasize the struggle that their caregivers and the broader health care system experience in trying to navigate care.
Parent reflections often emphasize the struggle that many young people with autism and their families experience because of a lack of funding, change in employment status and a lack of tolerance on healthcare providers (Cruickshank, 2013). Families with little recourse may in fact find themselves overwhelmed by advice that steers their children into situations where living on the streets becomes common and the opportunity for successful employment is significantly diminished.
One educational area that can offer the potential for success, mobility and expanded life-choices for autistic people is that of post-secondary education (PSE) (Gardiner & Iarocci, 2014). In Ontario, the number of children diagnosed with a label of autism has increased significantly. Data (see Figure 1) from the Ontario Ministry of Education indicate that over a seven-year span, the number of children diagnosed with the label of ASD has risen by 72%. Matson, Kozlowski, Hattier, Horovitz and Sipes (2012) suggest the loose criterion of the DSM-IV and increased awareness has accounted for such a spike and that the more restrictive criteria of DSM-V may reduce the trend. The fact remains that there is a growing cluster of children being forced to carry a label that plays a significant role in their schooling experiences and how people view them. An alternative view is raised by Steve Siberman (2015) who highlights the concerted and directed efforts of practioners throughout the 20th century to conceal and hide autism within a very myopic space. In this sense, the public holds an aberrant and isolated view of autism.
As a result of the increase of the number of elementary school students diagnosed with an ASD, the number of students with an autism exceptionality entering post-secondary institutions has also risen (Figure 2). Individuals with ASD have long attended post-secondary institutions. However, limitations in diagnostic tools and a diminished understanding of autism disorder all but rendered this population of students invisible, despite the fact that with the reformed and expanded criteria for autism, the number of children on the autism spectrum had risen dramatically.
The entry of ASD students into PSE means that post –secondary institutions (PSI) must be equipped to meet their needs both at a practical and structural level. However, Manett and Stoddart (2012) point out that the present structures of PSI often contribute to the challenges experienced by students with ASD who are transitioning from high school (HS) to PSE. These difficulties exist because there are vast differences between HS and PSE in terms of supports offered and how they are provisioned (Manett & Stoddart, 2012). Because there is an expectation that post-secondary students must work toward becoming independent learners (Smith, Goldfine, & Windham, 2009; Zutshi, Mitchell, & Weaver, 2011), a significant amount of responsibility is imposed on students who, in many circumstances, have only been required to make minimal decisions for themselves in any aspect of their life.
Additionally, what also must be considered is the relationship between comorbidity and ASD. While not relegated to students with ASD, students with ASD often have depression in addition to anxiety, which therefore makes emotional regulation for this population of students somewhat challenging. Consequently, there are greater implications for students within larger or even small classroom contexts. The culmination of unfamiliar peers, unfamiliar environments, unfamiliar course material and different expectations can often make it difficult for postsecondary students to navigate their classrooms in comparison to students who do not carry an ASD label.
It has been well documented that young adults with ASD will experience and may require lifelong supports to minimally succeed within an ever-increasing demanding society. It has also been well documented that young adults with post-secondary education are more likely to experience higher levels of success than their peers who have not attended post-secondary. The purpose of these blog entries is to enhance further the capacity for success for post-secondary students with ASD attending York by reaching out and supporting Faculty by understanding the experiences and [what] of ASD, albeit from the perspective of an outsider. I do not intend these blogs to speak for any student on the autism spectrum, rather offer an experience from my perspective in working with young adults on the spectrum over the course of the last several years. In leveraging both my professional and personal experiences, I hope to contribute to the discussion of how educational institutions can begin to think differently about ASD so that all students can flourish.