Autistic adults over three times as likely to die early, Ontario study finds
By Louise Kinross
Autistic adults in Ontario were more than three times as likely to die early as people of the same age and sex in the general population, according to a population-based ICES study believed to be the first of its kind in Canada.
"We need to start asking questions about whether there are things we're doing in our health system that contribute to why a group of people is more likely to die young," says lead investigator Dr. Yona Lunsky, director of the Health Care Access Research and Developmental Disability Program at CAMH. The study was published in Autism Research.
Researchers looked at deaths in autistic men and women in Ontario aged 19 to 65 from 2010 to 2016. They compared them to deaths in age-matched men and women without disabilities and those with other developmental disabilities. Over the six year period, 2.43 per cent of the autism group died compared to .77 per cent of the general population and almost 4 per cent of the group with other developmental disabilities. "This is not an autism-only problem," Yona says.
The Ontario study is important in light of a recent LeDer Report looking at early deaths in British people with intellectual disabilities that found that half of these deaths in 2021, caused by cancer, hypertension, diabetes and respiratory conditions, were avoidable. According to the LeDer website: "Research has shown that on average, people with [an intellectual disability] and autistic people die earlier than the general public, and do not receive the same quality of care as people without [an intellectual disability] or who are not autistic."
The main cause of death for autistic and non-autistic men in the Ontario study was accidents and injuries, while the main cause for autistic women and non-autistic women was cancer.
The scientists recommend Canada conduct annual mortality reviews like the LeDer program. "At this point we don't know why autistic people and people with developmental disabilities more broadly in Ontario are dying prematurely," Yona says. "Having these numbers is just the beginning, the tip of the iceberg."
In the U.K., death reviews of autistic people and people with intellectual disabilities have been mandated, but they are not here in Canada.
"We need to do more to find out what happened in each case, which we weren't able to do in this study," Yona says. "What was the health issue, what was the treatment, what did or didn't happen? We need to open the medical chart and talk to families. Was this person more reluctant to go to the doctor or not able to self-report symptoms as easily? Was there a communication barrier? When they described something, was it not taken seriously because of ableism? People need good care and if they see their doctor or go to the ER and aren't well, we don't want them to be sent home without addressing what the underlying issue is. We don't want to make people sicker because of how we treat them."
People with some intellectual disabilities may have other medical conditions like early-onset dementia or heart problems that cause premature death.
But there are reports in Canada and the U.K. of people who have died from entirely treatable conditions like constipation. "Are we monitoring illnesses as they emerge, are we keeping people safe so they don't have accidents, are we screening for cancer, are we treating circulatory diseases?" Yona asks.
In the Ontario study, the second most common cause of death listed for men with developmental disabilities was congenital malformations and chromosomal abnormalities. "This is a terrible version of diagnostic overshadowing," Yona says. "For example, nobody dies of Down syndrome. You might die because you develop aspiration pneumonia or you have complications related to late-stage dementia. That needs to be documented properly."
The Institute for Clinical Evaluative Sciences (ICES) study was done in partnership with CAMH, the University of Toronto, Ontario Tech University, Unity Health, and York University.
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