Research Report on Ontario’s Youth and Adults With Autism Spectrum Disorders Released Today

For Immediate Release
February 5th, 2013

“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,” released today.

The Redpath Centre has completed the first large-scale community-based study in over 20 years on the profiles and needs of youth (16+) and adults, all diagnosed with Autism Spectrum Disorders.

Since the last provincial study was released in 1991, there have been significant changes to diagnostic practices in this group of conditions.

Recent statistics suggest that more than 1% of the population could be affected, but
studies of Canadian adults with Autism Spectrum Disorders are just beginning.

“All individuals on the spectrum rely on a range of specialized and integrated services and supports throughout their lifetime” Dr. Lindy Zaretsky of Geneva Centre for Autism stressed.

The study profiles the needs of 480 youth and adults across Ontario. It identified that along with the core features of an Autism Spectrum Disorder, youth and adults also are faced with many other struggles related to health conditions, medication use, mental
health problems, social isolation and other disabilities. In addition, these youth, adults, and their families find a scarcity of services and supports that are knowledgeable about their needs.

In the report, many adults and their families remarked their communities lacked ASD-specific expertise and capacity,
especially when it comes to adults. Many reported unsatisfactory experiences with the
new Developmental Services Ontario (DSO).

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Other findings of the research include:

  • 75% of the adults 20 years and older had an annual income under $30,000
  • The largest income source was the Ontario Disability Support Program for 209 (58.2%) adults
  • Full-time employment was the primary income source for only 50 (13.9%), and part-time employment for 22 (6.1%) of the sample
  • Only 51.8% of the sample with “high-functioning autism” or Asperger Syndrome were diagnosed before 21 years of age
  • Over 60% of the youth and adults needed regular support accessing services
  • 31% of respondents felt they had an undiagnosed mental health disorder
  • 38.4% took part in only one social interaction or less a month
  • 73 people (15.2%) had no 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”.

Download the report at: www.redpathcentre.ca
and for further information contact:

Dr. Kevin Stoddart Margaret Spoelstra
Director, The Redpath Centre Executive Director, Autism Ontario
Email:kevin.stoddart@redpathcentre.ca Email: marg@autismontario.com
Phone: 416-920-4999 Ext 1065 Phone: 416-246-9592 Ext 222
Dr. Glenn Rampton Dr. Lindy Zaretsky
CEO, Kerry’s Place Autism Services CEO, Geneva Centre for Autism
Email: grampton@kerrysplace.org Email: LZaretsky@autism.net
Phone: (905) 841-6611 Ext 306 Phone: 416-322-7877 Ext 244