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Bridging gaps and building opportunities

How growing recognition of the diverse needs of students on the autism spectrum is fueling a culture change on campus.
BY SHARON ASCHAIEK WITH FILES FROM MOHAMED BERRADA
FEB 28 2024

Bridging gaps and building opportunities

How growing recognition of the diverse needs of students on the autism spectrum is fueling a culture change on campus.

BY SHARON ASCHAIEK WITH FILES FROM MOHAMED BERRADA | FEB 28 2024

For Emily Coombs, navigating higher education in Canada as someone with autism has come with distinct challenges. A University of Calgary graduate student who previously attended MacEwan University, the University of Alberta and the University of Victoria, she has faced extra hurdles in accessing the right support.

She says when she has shared her diagnosis with professors in order to ask for accommodations, one replied, “That sounds like obsessive compulsive disorder to me. I don’t think you’re autistic,” while another gave her a “weird look.”

Ms. Coombs also has visual and auditory sensitivity and university campuses generally aren’t friendly to her neurology. At U of C’s Werklund School of Education, where she works as a research assistant, the building’s fluorescent ceiling lights make her fatigued. And she can see few options to deal with busy, noisy spaces other than wearing noise-cancelling headphones.

She struggles most with social communication and prefers to minimize interaction with others. However, Ms. Coombs also recognizes that many autistics desire social engagement and says universities should do more to help these students feel like they belong.

“There needs to be a holistic approach to integrating autistic students into universities,” she insists. “We’re going to see more autistic people in university, so we need to support them.”

The prevalence of autism in Canada’s population has increased sharply in recent years, with the Public Health Agency of Canada (PHAC) estimating that one in every 50 of those aged one to 17 has received a diagnosis. While precise data on autism diagnosis trends in Canada is lacking, U.S. data indicates that rates in children have grown from one in 150 in 2000 to one in 36 in 2020. Rises in autism diagnoses have been attributed to improved screening methods, increased public awareness and exposure to environmental toxins, among other factors.

“We’re going to see more autistic people in university, so we need to support them.”

In response, public school boards have been compelled to step up their support for autistic students. Primary and secondary schools now provide more access to specialized accommodations and one-on-one assistance. As more students with autism become able to continue their academic journey after high school, there is a growing expectation for universities to properly support them. That need for increased resources is underscored by studies demonstrating the disproportionate struggles autistic students encounter at postsecondary institutions, which can include higher rates of academic difficulties, mental health conditions, dropping out, discrimination and social exclusion by peers.

The Canadian Academy of Health Sciences (CAHS) noted in a 2022 report that when it comes to autism-specific assistance at postsecondary schools, “few [programs] exist in Canada.” In the North American context, this finding echoes conditions in the U.S. higher education landscape, where a 2021 study revealed that just 2.2 per cent of public and not-for-profit universities and colleges have an autism-specific college support program. In January 2023, the Canadian cross-disability charity National Educational Association of Disabled Students (NEADS) released its 2023 State of the Schools report, which found that at universities, there are frequently “ineffective accommodations due to inefficient systems and procedures” for students with disabilities, as well as an overreliance on teaching disabled students to self-advocate that creates “demeaning, frustrating and exhausting” additional labour for “something which should be a right.”

“Many universities are trying, but they’re not getting it quite right,” says Aliyah Petzak-Grant, website manager at NEADS.

Spanning the spectrum

Autism spectrum disorder (ASD) is a lifelong neurodevelopmental condition that was first identified in the early 20th century. It affects brain development, which can impair communication, socialization, learning, motor skills and other key functions. Some autistics have sensory issues, engage in repetitive behaviours and/or have limited interests. The disorder is considered a spectrum because of how widely characteristics vary in affected individuals: some can function independently while others may need lifelong care. Many refer to themselves as “neurodivergent,” a non-medical term reflecting the normality of brain differences in humans that encompasses conditions such as ADHD, dyslexia, depression and anxiety.

Among Canadian postsecondary institutions leading the way in meeting the diverse needs of autistic students is York University. Its Strengthening Transitions for Students with Autism Spectrum Disorders program features a broad range of services to help autistic students prepare for and succeed at university, both inside and outside the classroom. Some of the program components are geared toward helping high school students prepare for the shift to higher education, such as ASD Transition Days. This is an opportunity for local students in grades 10 and above, along with their families, to learn about all the available autism resources, services and support. There is also an annual workshop for high school special education teachers and guidance counsellors to help them prepare their students with autism for postsecondary education. Project ADVANCE, meanwhile, is a free two-week summer transition program for incoming York students with a disability that explains disability services in more detail and builds competencies in self-advocacy, communication and social engagement.

“We’re trying to help them establish a sense of belonging and work towards self-actualization, to give them the confidence to move forward,” says Raymond Peart, coordinator of the ASD program, which also offers an early move-in day option, residence life preparation, a dedicated disability counsellor, academic coaching services and access to assistive technologies.

Aiding autistic learners’ transition to postsecondary education is also a priority for the U of Calgary, where, according to its recent survey of the student population, 17 per cent identify as being neurodiverse. In 2022, the university launched the Neurodiversity Immersive Campus Experience – two days of on-campus programming and workshops that introduce first-year neurodiverse learners to life at the university as well as some helpful campus services, while also connecting them with their neurodivergent peers. There are also two neurodiversity support advisers on staff who help develop tailored academic strategies for autistic students, while educating students, faculty and staff about neurodiversity.

“Many universities are trying, but they’re not getting it quite right.”

At Université Laval, the team at the student assistance centre helps autistic students arrange common academic accommodations such as extended deadlines and quiet settings to write exams, as well as connecting them with classmates who can take class notes on their behalf. Staff can also guide students on how to access mental health counselling and help them develop their interpersonal skills. Equally important, the centre helps university employees to better understand and communicate with autistic students. For instance, the centre held a webinar last year that attracted 150 teaching staff. Staff psychologist Anne-Louise Fournier says the centre has had to expand its capacity in order to continually support growing demand for services.

“Twenty years ago, we had no known autistic students seeking our services. Now we have more and more every year,” says Ms. Fournier, who is part of a team of 56 that includes multiple other psychologists as well as guidance counsellors, psychosocial workers and academic advisers. “We’ve increased our team of graduate tutors and provide them with training to better understand autism and best practices in communication.”

This investment by U Laval is good news to Ms. Coombs, who, as someone studying Canadian postsecondary support for autistic students, has observed a very uneven national landscape. A 2023 study she co-authored that surveyed staff at public universities about the barriers to supporting autistic learners identified a need for more funding, knowledgeable staff and institutional support. In an earlier 2022 study, Ms. Coombs helped map autism-specific student support at 258 publicly funded postsecondary institutions. The results revealed that only 15 offered one or more support programs.

Ms. Coombs also conducts research under the supervision of Heather Brown, an education scholar at the U of A who self-identifies as neurodivergent. Dr. Brown leads the Autism, Neurodiversity & Academic Achievement Lab, which co-runs the Campus Belonging Network, in which interdisciplinary neurodiverse and neurotypical researchers collaborate to improve belonging, access and success for autistic postsecondary students in Canada. She recently interviewed 34 current or former autistic postsecondary students about the barriers affecting their full participation in their education.

“What emerges from our analysis … is a pervasive sense of unease among many autistic students when it comes to disclosing their autism,” says Dr. Brown, noting that fear of stigmatization comes into play. “Our data unmistakably indicates that, in multiple respects, many spaces within higher education institutions are frequently deemed unsafe by autistic students.”

“I think the main gap is that most universities lack mentorship specifically for these students,” says Ms. Petzak-Grant at NEADS, who self-identifies as autistic. She notes that being matched with a peer mentor was tremendously valuable to helping her navigate life as a university student.

Mentorship is a key focus at Simon Fraser University, which since 2013 has been offering the Autism Mentorship Initiative (AMI). Participants are paired with a trained student mentor for a full academic year of weekly meetings. AMI co-creator Grace Iarocci, a psychology professor who directs SFU’s Autism and Developmental Disabilities Lab, says those who use the free service benefit from knowledgeable, caring guidance from mentors focused on “navigating the university, adjusting to changes, asking for help, getting connected with activities and organizations, and social adaptation.” Dr. Iarocci is tracking the initiative’s effectiveness, and in a 2021 co-authored paper, she observed improvement with “notable changes in mentees’ academic, social and emotional adjustment.”

Supporting the transition to the workforce

As critical as it is for universities to welcome, support and integrate autistic learners, it’s also vital to adequately prepare them for life after graduation. In its 2022 report, the CAHS noted, “Autistic students can benefit from enhanced access to internships, cooperative education and campus employment services.” The need for such support programs is underscored by the much higher rates of unemployment or underemployment faced by Canadians with autism: the PHAC reported in 2017 that just 33 per cent of Canadian adults with autism had jobs.

A recent report by Deloitte Canada that surveyed 454 autistic adults across the country found a disproportionate number worked on a part-time, contract or temporary basis — 41.7 per cent, compared to 18.4 per cent of non-autistic Canadians. They also face higher rates of job turnover and shorter average job tenure. The report identified the main barriers to their participation in the workforce include the interview process because of its focus on social versus job-related competencies, indicated by 40 per cent of respondents; the perception of stigma attached to autism, indicated by 55 per cent; and being the target of discriminatory treatment, reported by 42 per cent.

Due to an increased awareness of these circumstances, universities are adopting a variety of approaches to help autistic learners develop expertise in self-advocacy in an employment context. For instance, U Laval created a six-module online workshop to help students with disabilities successfully integrate into the job market. The modules explore topics such as understanding personal abilities and needs, accessing support at work and exploring community resources. A similar workshop is offered by the University of Toronto, focused on disclosure and accommodation strategies in the workplace for all students who identify as living with a disability. To help students with autism and other disabilities develop practical employment skills that will serve them well in the labour market, York offers a paid work study program at its Technology Lab.

Institutions are also reaching out to partners in the non-profit sector, Athabasca University has launched a new collaboration with Inclusion Alberta to create inclusive learning and employment opportunities for its learners with developmental disabilities. The non-profit will support the institution in connecting these students with suitable employment opportunities in their communities, and guide prospective employers on how to best accommodate and support the success of such employees.

“Inclusion Alberta will explain to employers what it means to truly include a person with developmental disabilities, and what a beautiful arrangement it can be for both the employer and the employee,” says Serita Smith, director of learner support services at Athabasca.

Last year, the U of C embarked on a comprehensive approach to supporting the employment prospects of autistic students by introducing the Work-Integrated Learning for Neurodiverse Students initiative. Supported by a $3.75 million gift from the Sinneave Family Foundation, the four-year project focuses on education, employment and housing outcomes for autistic youths and adults. By adopting a systemic approach to transforming the employment preparation ecosystem, U of C enables students to cooperate with employers to proactively identify and mitigate barriers to full inclusion in the workplace so that neurodiverse employees don’t have to ask for accommodations in the first place.

“Workplace cultures thrive through diversity. Diverse teams make better decisions. They are more welcoming, thoughtful, compassionate places to work,” says Leslie Reid, vice-provost of teaching and learning at the U of C. Increased efforts to help achieve that goal are rooted in the growing recognition that universities have a responsibility to help ensure “people who are neurodivergent are part of the workplace in every way, shape and form.”

Sharon Aschaiek is a Toronto-based writer and communication consultant specializing in the higher education sector.

PUBLISHED BY
Sharon Aschaiek with files from Mohamed Berrada
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  1. Rosemary Haddon / February 28, 2024 at 16:02

    This is a very positive development. I can confirm that I would have found this type of support invaluable, both as a student and later. Other helpful matters include the following: 1) knowing that I was neurodivergent, 2) receiving financial assistance that could alleviate my unremitting student poverty, 3) knowing beforehand that autistic female students are sexually vulnerable, and 4) knowing beforehand that competent autistic adults, particularly females, are taken advantage of in a multitude of ways, including the academic system. I hope the universities get it right and that one day aspiring NDs can enjoy the same level of life satisfaction as NTs.