York University researchers, in collaboration with the Centre for Addiction and Mental Health (CAMH), have launched a first-of-its-kind mental health literacy guide to address the knowledge gap in supporting autistic adults. The 200-page document provides a definition of autism in adulthood, how to identify mental health problems and mental health solutions for this community, and seeks to dispel misconceptions. It is free for anybody to access online, and combines input from research and first-person accounts of autism in Canada.
“One of the biggest myths we try to dispel in this guide is that autism is a mental health problem. Autism is not a mental health problem; it is a different way of being,” says Dr. Jonathan Weiss, associate professor in the Faculty of Health and York Research Chair in Autism and Neurodevelopmental Disability Mental Health at York University and project lead on the guide. “It’s a different way of communicating and understanding other people and interacting with other people, but it’s not less than, and it’s certainly not a psychiatric illness as is often traditionally conveyed.”
The guide follows two years of consultation with 29 autistic adults and family members of autistic adults from across Canada who spoke about their personal lived experiences. The advisers informed the structure, topics and content of the guide, including chapters on the definition of mental health, what it’s like to grow up autistic in Canada, strategies to maintain good mental health, appropriate identity-first language to use to talk about autism, signs of mental health problems and ways to promote well-being. The guide also includes information on the pandemic’s impact on autistic people.
“The pandemic has impacted everyone including autistic adults and their families,” says Dr. Yona Lunsky, director of the Azrieli Adult Neurodevelopmental Centre at CAMH and project co-lead. “Now is the time to amplify mental health resources for this group, developed by them and for them. I believe this can help all of us to support mental health with an autistic lens, which is so needed during the pandemic and also to help us as we plan our pandemic recovery. This project was community-based, and community-building. We need more of this during Autism Acceptance Month and every month after.”
Mental health literacy is described in the guide as knowing about mental health and having skills and support to apply that knowledge, including how to prevent mental health problems, the kinds of problems that can develop, effective self-help and community strategies for mild-to-moderate problems and explanations of how to help others.
Approximately half of autistic adults will have at least one mental health or addiction diagnosis in their recent past and autistic adults are three times more likely to have a suicide attempt compared to non-autistic adults. Researchers say previous mental health literacy materials did not talk about the intersections between well-being, mental health problems, and what it’s like to be autistic.
The content is targeted toward autistic adults and their family members, professionals, policymakers and leaders to increase their understanding about mental health within the context of autism, and to provide information about the mental health systems across Canada.
“Let’s talk about what we’ve experienced. Let’s talk about what’s worked for us and what hasn’t worked for us. What are some of the barriers to accessing mental health? What are some of the key terms that we want other people to know? We can use our experience and our knowledge to help other autistic people make that step towards asking for help, building a toolkit for themselves to help themselves through mental health crises, or just the highs and lows of mental health as you go through life,” says Elsbeth Dodman, adviser on the guide.
Weiss says when the pandemic struck, many of the stressors of COVID-19 were already impacting mental health for the public-at-large and some of these also had a unique impact on autistic people. The guide’s chapter “Navigating Crises, Emergencies and Pandemics,” includes autistic advisers’ experiences during the pandemic.
“A number of autistic people have particular routines in their lives that are helpful, and COVID-19 represents one of the largest disruptions to this sense of routine. At the same time, COVID has made some things in society more accessible and less sensory intrusive for them, such as being able to work from home or having less people in public places, and some advisers have reported that they are doing better,” says Weiss.
“We hope this guide increases the knowledge of mental health within the context of autism in Canadian society,” says Paula Tablon Modica, master’s student in Public Policy, Administration and Law in Weiss’ lab and project coordinator for the guide. “Our goal is to ensure the guide educates people and to promote a more accepting and inclusive environment related to autistic mental health. We also highlight the need for more autistic-informed mental health supports for autistic adults here in Canada and internationally.”
The guide was funded by the Public Health Agency of Canada’s (PHAC) Autism Spectrum Disorder Fund.