Despite an increase in public understanding of the importance of good mental health care in recent years, accessing care remains a challenge for both New Brunswickers and Canadians.
One group that has faced persistent barriers in accessing appropriate mental health care, services and support is people with an intellectual or developmental disability, despite the fact that mental illness rates among people in this group are three to four times higher than in the general population. In fact, people with a dual diagnosis of a developmental disability and a mental health concern frequently experience rejection and lack of service from the health care system – this is despite the fact that over 50 per cent of Autistic youth have a mental health concern.
Many people with an intellectual or developmental disability and their supporters attribute these barriers to a lack of understanding of their unique needs. It’s an issue that 29 members of the Autistic and Autism communities across the country have taken steps to change, with the creation of a new, first-of-its-kind Mental Health Literacy Guide for Autism.
Created to increase awareness and share knowledge around issues related to mental health and Autism, the guide is intended for everyone, but especially for members of the Autistic/Autism community, family members, professionals, policymakers, and leaders.
Three Autistic New Brunswickers – Louise Tardif, Aaron Bouma, and Amond McKenna – were involved in the creation of the guide, acting as advisers.
“I would consider this guide to be a quantum leap; I would consider it to be a historic moment. This was a huge step for us,” said Amond of the involvement of Autistic advisers in the creation of the guide. “This guide is a big deal because we don’t get asked these questions. For us to be included is a huge deal, though it should be the norm… Inclusion includes us in the conversation.”
The advisers were involved in every step of the guide’s creation, including information about their own lived experiences in accessing mental health care.
“We received advice over a two-year period in how the guide should be structured, our use of language, and the content within it,” said Dr. Jonathan Weiss, associate professor in the Faculty of Health at York University, York Research Chair in Autism and Neurodevelopmental Disability Mental Health, and project lead on the guide. “It is important because it carries with it the voices of many Autistic people, who were passionate about providing knowledge on mental health. It is the first guide of its kind, focusing on providing information to improve mental health literacy around Autism and mental health.”
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’s 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,” said Dr. Weiss. “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.”
All three New Brunswickers have experienced frustration and difficulty in accessing mental health care.
“We need people to understand how to receive us with care,” said Louise. “They dismiss our concerns because they think they’re just from being Autistic.”
Approximately half of Autistic adults will have at least one mental health or addiction diagnosis in their recent past, and they are three times more likely to have a suicide attempt compared to other 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.
“We deal with a tremendous amount of ableism; there’s a lot of misinformation in New Brunswick. A lot of people do not understand. It’s seeped into the culture and our laws and policies so deeply,” said Aaron. “I think there are pockets of hope here and there. I’m really excited about this guide because there’s so much in there.”
The guide’s developers and advisers believe the guide should be referenced by a broad audience, including psychologists, support workers, social workers, councillors, employers, and students studying the mental health field, as well as school systems and the Department of Social Development. A French version of the guide is being developed.
“I hope the resource will be used as a starting point to improve people’s knowledge about Autistic mental health. I hope Autistic adults, family members, and the broader community learns more about what Autistic mental health looks like, how it can be supported, and what we can do if someone needs help,” said Dr. Weiss. “I think it is important for people to have a greater awareness about the many individual and contextual factors that influence mental health, and this guide can help do that.”