New Toronto research hub to focus on developmental disabilities and mental illness

One of Canada's most high-profile mental health treatment centres says it's opening a new research hub that will focus on the needs of people with both developmental disabilities and psychiatric conditions.

Statistics suggest mental illness more prevalent among those with neurodevelopmental disabilities

Daniel Share-Strom is seen in Bradford West Gwillimbury, Ont., on Saturday, February 3, 2018. He has Asperger syndrome and has struggled with mental health issues. (Christopher Katsarov/Canadian Press)

One of Canada's most high-profile mental health treatment centres says it's opening a new research hub that will focus on the needs of people with both developmental disabilities and psychiatric conditions.

The Centre for Addiction and Mental Health says the new hub is the first in Canada to tackle the needs of a population that has long been ignored.

Statistics suggest that incidents of mental illness are considerably higher among those with autism, Down syndrome or other neurodevelopmental disabilities than among the general population.

The problem exists at all ages, but is worse for adults, as the few resources available while children are in school all but disappear once they age out of the system.

CAMH's new Azrieli Centre for Adult Neurodevelopmental Disabilities and Mental Health will focus on research and education that experts hope will improve the way the medical community responds to this group's unique needs.

People with disabilities and medical experts agree it's common to see doctors conflate disability and mental illness, often dismissing the symptoms of one disorder by attributing them to the other.

Research lacking

Research on the topic is minimal, reflecting what many see as the level of care afforded to people who are both disabled and mentally ill. But the advocates and experts said the data that does exist illustrates the scope of the problem.

A 2012 study from CAMH and the Institute for Clinical Evaluative Sciences found that 45 per cent of adults in Ontario with a developmental disability also had a psychiatric disorder, roughly twice the rate of the general population.

In 2010, a study from the Canadian Journal of Psychiatry found almost half of hospital admissions for people with such disabilities were for psychiatric reasons.

For Daniel Share-Strom, who has Asperger syndrome and struggled with mental health issues throughout his life, the overlap is easy to explain.

"From birth, whether it's from jerks or people who genuinely have good intentions, you're told every single day how weird you are and how wrong you are," Share-Strom said in a telephone interview. "People are trying to correct your basic instincts. On top of that, there's all these sensory challenge. People are naturally going to lose their confidence and naturally going to start feeling anxious about the world around them or depressed when thinking about their perceived failures."

Dr. Yona Lunsky, head of the new centre, said there are other causes behind the complex interplay between disability and mental health.

She sited ongoing stigma, social isolation, chronic unemployment and poverty as factors that loom large in the reality of many disabled people and can take a severe toll on mental health.

What's less understood, she said, is the way to best identify the needs of a person contending with both a developmental disability and psychiatric disorder at the same time.

She said health-care providers will frequently overlook or dismiss a sign of a mental illness, such as anxiety or depression, by treating it as a symptom of autism. Conversely, she said people who don't act according to social norms may have their behaviour chalked up to mental illness when it is in fact just a way their disability manifests itself.

This, she said, can lead to people receiving inappropriate treatment, such as antipsychotic medication that will not address their needs.

"One group sees only one side, the other sees only the other," Lunsky said of most health-care providers. "We need to have an understanding of both."

'I don't feel safe'

Medical sociologist Alex Haagaard said that misunderstanding can result in patients avoiding treatment altogether for fear of how they will be served by a system that can't grasp their needs.

Haagaard, who uses the gender-neutral pronouns they/them, said doctors have routinely misunderstood the interplay between the autism and chronic depression that are part of everyday life.

The result has been some harrowing personal experiences.

"When I'm having a depressive episode, I don't feel safe bringing it to my doctors because I worry about the extent to which it will derail my attempt to seek diagnoses for my physical issues," Haagaard said. "It's definitely a significant problem."

Lunsky said the new centre, funded by a $10.4 million donation from the Azrieli Foundation, will not be a standalone facility where patients can go to seek direct treatment.

Instead, it will focus on hiring researchers and clinicians to support CAMH's existing services, develop new treatment protocols for the issue and share that knowledge throughout the medical community.

Haagaard said educating health-care workers is crucial, but they hope the patients the centre aims to help will play an active, ongoing role in its work.

Haagaard said scientists with lived experience of both disability and mental illness have unique perspectives that can help inform research and ensure that solutions actually address the needs of the population.