Thursday, July 25, 2013
Dear Ms. Monsebraaten,
We are writing in response to your article entitled, "Groundbreaking adult autism survey reveals mountain of unmet needs" (Toronto Star, Feb 3, 2013), and want to commend you for providing information on such an important and pressing topic. Adults with autism are frequently marginalized in our society and often receive little support once they age out of the education system. You outlined some key results from the survey related to social isolation, a lack of full and part time employment and the implications for this particular age group.
You mention the fact that fewer than 14% of adults with autism had full-time jobs, while only 6% had part-time employment. This has severe implications regarding financial well-being and standard of living. As you point out, two-thirds of those adults over the age of 19 had annual incomes of less than $30 000. According to Poverty Free Ontario, the poverty line for one person working full time for one year was $19,719 in 2009 (Poverty Watch Ontario, 2013). It is possible that some, if not most, of the adults interviewed are living at or below the poverty line. Those who did not have full or part-time jobs relied on the Ontario Disability Support Program (ODSP); however, income received through this program is approximately $1 000 per month, depending on a variety of factors (Ontario Ministry of Community and Social Services, 2013).
Another theme that emerged from this study was that of social isolation. You reported that nearly 40% of adults interviewed indicated that they had just one social interaction or less per month and that 15% had no regular structured activities outside the home. These findings are similar to that of other studies (e.g., Liptak, Kennedy, & Dosa, 2011; Müller, Schuler & Yates, 2008; Orsmond, Wyngaarden Krauss & Mailick Seltzer, 2004), which have also reported a lack of social interactions and activities, and feelings of isolation. A lack of social networks in adulthood is also associated with low levels of employment, as people may create friendships and engage in social activities with the people that they meet at work. It would appear that at least some adolescents and adults with autism want to increase their social interactions and relationships, but are unsure how to do this (Müller, Schuler & Yates, 2008). As social isolation and a lack of meaningful relationships seems to be a common finding, it is important that countries such as Canada and the United States address this need and make services accessible to all adolescents and adults with autism.
As you stated at the beginning of your story, many individuals with autism rely on their families for financial, emotional and social support. The cost of caring for a loved one with a disability such as autism can be tremendous for these families. The report by Kevin Stoddart indicated that the families feel defeated and disempowered by provincial health and social service systems because they are not doing enough to help those who require services and assistance. Not only do people with autism need support from the government, but their families do as well.
Adults with autism are not often highlighted in the news and it was refreshing to read your article, which raised many important points. We hope it will generate some discussion and strategies on ways to improve the lives of the many adults with autism in meaningful and sustainable ways.
Shannon Wilkinson MADS, BCBA and David Celiberti, PhD, BCBA-D
Association for Science in Autism Treatment