“Youth and adults with Autism Spectrum Disorders and co-existing mental health or medical needs are among the most marginalized people in Ontario’s healthcare and social service system,” says Dr. Kevin Stoddart, Director of The Redpath Centre and Adjunct Professor, Factor-Inwentash Faculty of Social Work, University of Toronto.
Dr. Stoddart is the lead researcher on a report entitled: Diversity in Ontario’s Youth and Adults with Autism Spectrum Disorders: Complex Needs in Unprepared Systems.
The research is the first large-scale community based-study in over 20 years that investigated the profiles and needs of youth with ASD aged 16 years to adulthood. Researchers said that diagnostic practices for this condition have changed dramatically since the last provincial study was released in 1991.
“All individuals on the spectrum rely on a range of specialized and integrated services and supports throughout their lifetime,” said Dr. Lindy Zaretsky of Geneva Centre for Autism.
The study profiled 480 youth and adults across Ontario who struggled with the symptoms of autism. The participants also faced challenges related to mental health problems, physical health conditions, social isolation, and other disabilities. Many participants said that their communities lacked ASD specific expertise, especially for adults, and said that they were dissatisfied with the newly formed Developmental Services Ontario (DSO).
- 75 percent of the adults 20 years and older earned an annual income under $30,000
- 58.2 percent (209) adults received Ontario Disability Support Program benefits, the largest source of income for participants
- Only 13.9 percent (5) participants had full-time employment as their primary income source
- 6.1 percent (22) were employed part-time
- 51.8 percent of the sample had been diagnosed with “high-functioning autism” or Asperger Syndrome before they were 21 years of age
- Over 60 percent of the youth and adults needed regular support to access services
- 31 percent of the participants felt they had an undiagnosed mental health disorder
- 38.4 percent took part in only one social interaction or less a month
- 15.2 percent (73) did not have access to regular, structured activities outside of home
“To address these multiple unmet needs, research and data collection must be ongoing, significant changes must occur across multiple systems and provincial ministries, and regular feedback must be elicited from a wide range of consumers and stakeholders,” the authors conclude.
“The findings are sobering but not surprising,” commented Margaret Spoelstra, Executive Director of Autism Ontario, one of the funders of the study. “Although the situation is disappointing, the results also point the direction to potential systems improvements.”