Bruce Petherick was first diagnosed with autism as an adult. At the time, he was covered under his wife’s health insurance, so he didn’t have to pay thousands of dollars in autism diagnostic costs out of pocket.
But now, the couple doesn’t have health insurance and he cannot afford psychiatric care.
Autistic people like Petherick are cut off from public support when they hit 21, a phenomenon known as “falling off the cliff” that is experienced across the country.
“When you look at funding models across the world, it’s so super concentrated on the zero-to-five age group,” said Petherick, who is an advocate for Autism Canada, an advocacy organization. “Up to 10 [years old] it gets less and then teenagers it gets less… Then [with] adults, it… almost totally disappears.”
For Petherick, his autism diagnosis was life-changing. The former professional musician who toured for 40 years says it helped shed light on some of the issues he struggled with.
“When I got the diagnosis, I realized how important it was for me to make sense of what had gone on in the past,” he said.
After 21, ‘you have nothing’
Services for autistic people are concentrated on assessing and supporting children. Studies show early intervention does help lessen the severity of autism symptoms.
But autistic people need life-long support, says Lili Plourde, executive director of the Fédération québécoise de l’autisme. In Canada, those resources aren’t there.
“Once your child reaches 21, you have nothing,” she said.
Autism can manifest in different ways, with varying levels and degrees of symptoms. Professionals use levels to classify the severity of autism symptoms. Level one is the least severe and Level three is the most, according to the American Psychiatric Association.
Autistic people require support throughout their lives, says Petherick. Those with autism of any level can have difficulty interpreting social cues, connecting with others and staying organized.
“We know that autistic kids become autistic adults and autistic seniors. And as you go along that trajectory, that lifespan, there’s even less and less support and less understanding of what are the needs of autistic people as they grow older,” said Jonathan Lai, executive director of the Autism Alliance of Canada, which conducts research and provides policy recommendations to the government.
Public Health Canada is developing a national autism strategy, which advocates hope will address the lack of adult care. Over the next few years, Ottawa will fund research and hold consultations, then publish new strategies for the support of autistic adults.
Autism Alliance this week submitted their report to Public Health Canada, which surveyed almost 2,000 autistic adults over the age of 30.
The survey looked at adult employment, financial support, housing, transportation, mental health and physical needs of autistic people, says Lai, who is also an adjunct faculty member at the University of Toronto’s school of public health.
Sixty-eight per cent of autistic adults reported that their housing costs consume more than 30 per cent of their income, or that someone else pays their housing costs. By comparison, only 21 per cent of households reported spending 30 per cent or more of their income on housing in 2021, according to Statistics Canada. The Canadian Mortgage and Housing Corporation recommends that housing costs not exceed 30 per cent of monthly income.
Many autistic adults said they couldn’t afford to be assessed and treated because private treatment costs, such as sessions with a psychologist or psychiatrist, are expensive. A private autism assessment costs thousands of dollars, with Autism BC estimating a formal diagnostic can range from $3,000 to $5,000. Sessions with a mental health worker normally cost more than $100 per appointment.
Paying for necessary long-term treatment is not affordable for most, says Petherick.
“The number of people who can actually afford private therapy and support is much smaller than those who can’t,” said Petherick. “They may be able to fund two sessions, three sessions, but if you need ongoing [therapy], it’s just not sustainable.”
Within the workplace, those surveyed also reported lacking the adequate support to perform their jobs.
Mackenzie Salt, lead researcher of Autism Alliance’s Canadian project, said this survey was different from earlier ones because it was developed by autistic adults and therefore better able to assess the actual needs of the community.
“We want to make sure a national autism policy is representative and that it is informed by the people it’s going to support,” said Salt.
Results of the survey will help inform strategies that will form the next phase of the national autism strategy, Lai said.
“My statement always is people don’t realize there are more autistic adults in the world than autistic children,” said Petherick. “We need to normalize it — we need to normalize that an autistic person, we are here, we exist, and… we are positive parts of our community.”
