61-year-old Susan Burton-Bowler has struggled with mental illness her whole life. She only learned she had autism when she was 35.
“I have struggled throughout my life with anxiety, depression and Obsessive Compulsive Disorder,” she says. “I self medicated with drugs and alcohol.”
Burton-Bowler went on to recover from substance abuse and, with vocational rehabilitation support, get a university education but found that because of her autism, it was hard to find and keep a job. “I found it difficult to find employment. I didn’t do well in job interviews. I couldn’t ever get past the interview,” she recalls.
Burton-Bowler is among an estimated 93,000 adults in Ontario who are affected by the challenges of Autism Spectrum Disorder (ASD). Many go undiagnosed for far too long. Without appropriate diagnostic and mental health services, many of these adults suffer in isolation.
“Adults with ASD often struggle with mental health issues-- often undiagnosed or untreated due to lack of understanding of ASD in the mental health field,” says Dr. Kevin Stoddart, Director of the Redpath Centre in Toronto, a leading autism spectrum organization.
When children with ASD turn 18, many of the services are no longer available to them. “The transition to adulthood for people with ASD is like dropping off a cliff,” says Dr. Doug Weir, former president of the Ontario Medical Association.
Dr. Weir and Kevin Stoddard are co-chairs of the newly formed Ontario Working Group on Mental Health and Adults with Autism Spectrum Disorder. The Working group’s mandate, unveiled at a news conference at CAMH on August 7, is to increase knowledge about the issues facing adults with ASD and improve services. Educating psychiatrists, family doctors and mental health practitioners is goal of a conference that the group has organized for October 22.
“I hope this group will help us understand how we can make the process of diagnosis easier so that people can be better connected to the services they need,” said Burton-Bowler, now an advocate for adults living with ASD.
Members of the newly formed Ontario Working Group on Mental Health and Adults with Autism Spectrum Disorder (From Left to Right) Dr. Doug Weir, Senator Jim Munson; Susan Burton-Bowler, Sally Ginter, CEO of Kerry’s Place; Dr. Kevin Stoddart. Director of the Redpath Centre; Dr. Kwame McKenzie, Medical Director, CAMH
“Working together and collaborating across the system is the first step to improving care for this marginalized patient group,” said Dr. Kwame McKenzie, Medical Director, Underserved Populations, CAMH. “The working group will provide ongoing opportunities for psychiatrists and primary care physicians to learn more about clinical and lifespan issues adults with ASD face.”
The Ontario Working Group on Mental Health and Adults with ASD is composed of representatives from major providers of mental health services, professional medical and allied health groups, and leading autism spectrum organizations. Current participants include: CAMH, the Ontario Medical Association , Geneva Centre for Autism, Autism Ontario, the Redpath Centre, University of Toronto, and Kerry’s Place Autism Services.