Researchers are calling for improved diagnosis, prevention and treatment of psychiatric illness among autistic people after finding they are at a higher risk of self-harm and suicide than non-autistic people.
"We think psychiatric diagnosis plays a very important role in explaining these increased risks,” said lead author Dr. Meng-Chuan Lai, a staff psychiatrist and senior scientist at the Centre for Addiction and Mental Health (CAMH).
The new study, conducted by CAMH and the Institute for Clinical Evaluative Sciences (ICES), found that autistic females had an 83 per cent increased risk of self-harm than non-autistic females.
Autistic males had a 47 per cent higher risk of self-harm than non-autistic males.
The researchers also found that deaths by suicide were "rare," but autistic people were still at higher risk and that psychiatric disorders were a factor.
The findings, which were published in the journal JAMA Network Open earlier this week, support previous research showing that autistic people "tend to be more vulnerable to almost all kinds of psychiatric disorders that we know," said Lai.
Those include anxiety, depression, ADHD, substance use and some psychotic disorders, Lai said.
But psychiatric disorders often go undiagnosed among autistic people, partly because clinicians may assume that self-harm symptoms are part of the autism — a phenomenon known as "diagnostic overshadowing," said study co-author Dr. Yona Lunsky, an adjunct scientist at ICES and director of the Azrieli Adult Neurodevelopmental Centre at CAMH.
"Mental health is a huge issue in this population that's not really well recognized or addressed,” Lunsky said.
"We want to be able to get to the proactive mental health care that helps us understand what's going on and (ensure that) that things get better before they get really bad. But I think for this population, it can be hard to recognize some of the symptoms of psychiatric disorders early on, and it can be harder to also find and access some of those supports and care."
That leads to people's mental health getting "worse," she said, including symptoms such as self-harm.
The researchers used Ontario health administration databases to follow both children and adults who had been diagnosed with autism between April 1, 1988 and March 31, 2018.
They matched autistic people based on age and sex at birth to non-autistic people from the general population and looked for Ontario emergency department visits resulting from self-harm. The analysis included data from 379,630 people over 15 years (April 2005 through Dec. 2020.)
They looked at another cohort of 334,690 people and found an increased rate of suicide among autistic females and males compared to non-autistic people over a 25-year period (April 1993 though Dec. 2018.)
The study adds to "a considerable body of research showing the incidence of self-injury among autistic people is concerningly high," said Philippa Hood, an autistic self-advocate and psychology graduate student at Simon Fraser University, in an email.
"The real issue facing autistic people who are also suffering psychiatric illness is that there (is) a critical lack of dedicated accessible services," said Hood, who is also on the board of Autism Canada and was not involved in the study.
"There is an urgent need for more qualitative research into self-injury among autistic people if we are to be able to shape effective interventions in the future," she said.
The study findings also don't surprise Megan Pilatzke, an autistic woman in Sudbury, Ont., who is also taking medication for anxiety.
Pilatzke wasn't diagnosed with autism until 2021, when she was 31 years old, but suffered from depression and anxiety since she was a teenager.
She was misdiagnosed with bipolar disorder and felt "very broken" and "suicidal a number of times."
Now that she's been correctly diagnosed with autism and is getting the right treatment for her anxiety, Pilatzke has worked with CAMH to share her experiences and help teach health-care providers how to change mental health practices for autistic people.
The most important change, Pilatzke said, is to "start consulting with autistic people" and to listen to each person to meet their individualized needs in health care.
Some doctors who have autism themselves have already identified how some needs could be met, Lai said.
They include modifying the environment to avoid the overstimulation that some autistic people struggle with, Lai said.
Adjusting communication style is another important accommodation, he said, because autistic people often process information best when it's "clear, unambiguous" language, avoiding metaphors.
One of the limitations of the study is that although it suggests an increased risk of mental health issues among autistic people, it doesn't shed any light on why that's the case, said Lai, noting that further research is needed to help answer that question.
There are several possibilities to look at, he said.
"We do know autistic people tend to experience lots of stigma and being misunderstood," which can lead to lower employment rates and other social factors that can be associated with mental illness, Lai said.
Autistic people are also at higher risk of bullying or other forms of victimization — "adverse events" that can affect mental health, he said.
It's also possible that there could be "biological factors" shared between autism and other psychiatric conditions, Lai said.
If you or someone you know is thinking about suicide, support is available 24/7 by calling Talk Suicide Canada (1-833-456-4566) or texting 45645 in the evenings. Residents of Quebec can call 1-866-APPELLE (1-866-277-3553) or visit suicide.ca for support by text and online chat.
This report by The Canadian Press was first published Aug. 10, 2023.
Canadian Press health coverage receives support through a partnership with the Canadian Medical Association. CP is solely responsible for this content.
Nicole Ireland, The Canadian Press
