Mental and Physical Health in Youth and Adults with Autism Spectrum Disorders in Ontario Canada: Findings From a Community-Based Sample

Background:  There has not been a major community-based survey in Canada since the 1990s on the profiles and service needs of youth (16+) and adults with ASDs. Since then, there have been significant changes to the definitions of this cluster of disorders in the DSM, and as a result, in the community a greater recognition of the entire range of ASDs. A contemporary understanding of the profiles of these individuals is essential in guiding the development of policy, research and service agendas.

Objectives:  The objective of this study was to gather data on the clinical profiles and service needs of a large community-based sample of individuals 16 years of age and over with ASDs in Ontario Canada. Data was collected in the following areas: (i) Medical and mental health information; (ii) Life skills information; (iii) Service/support use, needs and costs; (iv) Social activities; and (v) Daily activities. In this report, summary data will be presented on medical and mental health information only.

Methods:  Data was collected across the province of Ontario using an Internet-based questionnaire. The questionnaire was devised based on previous large-scale surveys on adults and in consultation with stakeholder groups. The study was advertised by school boards, agencies and organizations providing services and supports to youth and adults with ASDs. Upon an expression of interest in the study, respondents were required to verify that they were: (i) an individual diagnosed by a professional with an ASD or, (ii) a family member of an individual diagnosed with an ASD or, (iii) a professional with knowledge of an individual diagnosed with an ASD. Participants completed one survey per individual identified with ASD; therefore, these findings represent the profiles of 490 unique youth and adults. The data was collected between August 2011 and August 2012.

Results:  The sample was comprised of 72% males. The mean age of the sample was 29 years (SD=12). The findings indicate that many youth and adults with ASDs continue to receive their first diagnosis in adolescence and adulthood, although there is a significant difference in the age of diagnosis between the autism group and the Asperger Syndrome group. 42% of the sample had been accurately diagnosed with anxiety, 27% with depression, and a third felt that they were suffering from an undiagnosed psychological disorder. Overall, we found that there were high rates of health problems and extensive use of medications and complimentary treatments. Access to clinicians and health care providers who understand these needs are however limited, according to respondents.

Conclusions:  Given that a recent epidemiological study of adults with ASDs in the UK suggested that 1% of the adult population there may have an ASD, it is critical that health policies and services parallel our emerging understanding of this cohort’s physical and mental health needs and profiles gained through the collection of data from large community-based samples.