“Youth and adults with autism spectrum disorders and co-existing mental health or medical needs are among the most marginalized people in Ontario’s health and social service system.” This was the conclusion of a detailed survey of 480 Ontarians between the ages of 16 and 66 who actually had a formal diagnosis of some condition on the Autism spectrum. (Diversity in Ontario’s Youth and Adults with Autism Spectrum Disorders: Complex Needs in Unprepared Systems, Redpath Centre, 2013).
The survey found that “Ontario youth and adults with ASD often lead lonely, impoverished lives and struggle to find appropriate health and social supports. Most continue to rely on their families, who suffer in silence because they feel defeated and disempowered by provincial health and social service systems that have abandoned them.”
Adults with ASD have a range of abilities and interests. Some, when encouraged, show their potential and prove that support is worthwhile. We hope that viewers will pick up this message in our film. However, the realities of life with ASD for most adults are much harder. The focus may too often be on “what’s wrong?” rather than on “what helps to make a good life?” Too many adults experience extreme anxiety, depression, and repetitive or disturbing behaviour including self-harm.
Gender in Autism
The film’s lead character is a young man. What about girls and women? Don’t they have Autism? In the first counts of children with Autism, the disorder was 3 to 4 times more common in boys than girls. So out of the 4.5 per 10,000 counted in the 1960s, only one would be a girl. When Asperger Syndrome was recognized from the 1990s, only one in ten was a female.
Some outstanding women with Autism have given us valuable insights into their lives. Books by or about Temple Grandin, Donna Williams, Jessica Park, Liane Holliday Willey , Wendy Lawson, Lucy Blackman, Sue Rubin, Dawn Prince-Hughes and Rudy Simone are well worth reading.
It is now thought that girls and women with ASD have been seriously undercounted. Diagnostic criteria and practices were historically biased towards the conventional male presentation of ASD and unreliable for identifying females who may also be able to carry higher levels of genetic mutations without getting any brain development disorders, a "female protective effect." Girls with ASD tend to be less disruptive than boys with ASD. They have more vivid imaginations than boys and usually share more interests with other girls. Girls and women may have been better at adapting to or compensating for symptoms of ASD (“the camouflage hypothesis”).
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