Diagnosing autism in adults is more common, expert says, but getting an assessment isn't always easy

Megan Pilatzke ended up on a journey of self-discovery almost by accident.

In 2019, Pilatzke began researching autism after learning the man she was dating (now her fiancé) has a nephew diagnosed with autism. 

"What I knew about autism was that it existed, that it was there in children, and that was really about it," said Pilatzke, who lives in Sudbury. 

A year later, she read a book about autism in women and girls, and suddenly things clicked. 

"I was absolutely in tears. I was just reading what felt like an autobiography," Pilatzke said. 

"It was reading about just different things in childhood, different things in adolescence, even in my adulthood. Just things that I never questioned that could be me on the spectrum. And I immediately thought, 'Oh my God, I gotta find out what is going on.'"

The following spring, in May 2021, Pilatzke was formally diagnosed with autism at age 31. 

Pilatzke is among people seeking autism assessments — whether formal or informal — well into adulthood, efforts that appear to be more commonplace for that population. 

Generally, autism, or autism spectrum disorder (ASD), encompasses a broad range of conditions characterized by challenges with social skills, repetitive behaviours, speech and non-verbal communication. There are many subtypes of autism, resulting in a distinct set of strengths and challenges for each person.

According to Autism Canada, one in 44 individuals are on the autism spectrum.

'Masking' autism traits causes stress

At the Redpath Centre in Toronto, director Kevin Stoddart said more adults have been seeking autism assessments in recent years. The centre specializes in diagnosis and supports for ASD and other neurodevelopmental conditions. 

Stoddart said many people are prompted to look into an autism assessment because of trouble navigating workplace dynamics or challenges in forming friendships and intimate relationships. 

"This may have been kind of a longstanding struggle, but they've just realized as they become young adults or adults that the problems persist," said Stoddart, an adjunct professor in the Factor-Inwentash Faculty of Social Work at the University of Toronto.

Stoddart said girls and women in particular are often better at "masking" some of the common traits associated with autism, and may come to Redpath after having already had experience in the mental health system — whether from doing their own research or being referred by a mental health professional.

"We know that there's an emerging literature on masking and autism, and the stress that involves for people on the spectrum." 

'I really didn't know who I was'

Pilatzke has dealt with mental health struggles for years. She was diagnosed with major depressive disorder and later bipolar disorder. 

"But for whatever reason, I just never felt like that was correct, like something was not right about it, something was missed and something wasn't right."

When she started reading about autism, she said, so many details about her life started to make sense — including feelings of not belonging and her ways of communicating.

Pilatzke describes herself as "blunt," and said understanding subtle or hidden meanings in conversations doesn't come naturally. She said she's never had a large group of friends. 

Pilatzke said her autism diagnosis was a revelation and it's helped her to better understand herself. 

"A lot of the time up until I had that diagnosis, I really didn't know who I was. I was still struggling to find who I am and where I fit." 

Financial barriers 

Not everyone with autism necessarily needs supports, and many don't seek an official diagnosis. But Stoddart said that for a lot of people, a formal assessment can be helpful to better understand themselves and get the validation an expert opinion can provide.

That has certainly been the case for Pilatzke. 

But getting a formal assessment isn't always easy and the cost can be a big barrier.

The province covers autism assessments for children, and some adults can get coverage under certain circumstances, such as if they are enrolled in post-secondary education.

But most people over age 18 are on their own.

At his practice, Stoddart said a full psychological assessment may cost up to $2,500. Pilatzke, who has health coverage through her employer, still had to pay $1,500 out of pocket. 

That cost has been a barrier to Lara Newell-Barrette of Sudbury. The 53-year-old has done several online assessments that show a high likelihood of autism, but she has not had a formal assessment.

Newell-Barrette began thinking she may have autism in November. Much like Pilatzke, it was prompted by research she was doing for someone else. As she read articles and watched YouTube videos, "light bulbs were going off." 

Some of the main traits she sees in herself are high sensitivity and trouble with executive functioning, which she said affected her ability to thrive in workplaces. She's now self-employed, but wonders what might have happened if she'd had a better understanding years ago of how her brain works. 

"You know, I look back and think, 'You know what? How could things have looked differently had I had that awareness and supports?'" 

For now, Newell-Barrette is self-identified as being on the autism spectrum. She hopes some day she may be able to get confirmation through a formal assessment.