Megan Pilatzke found herself on a journey of self-discovery almost by accident.
In 2019, Pilatzke began autism research after learning that the man she was dating (now her fiancé) had a nephew diagnosed with autism.
“What I knew about autism was that it existed, it was present in children, and it 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 just reading about different things in my childhood, different things in my teens, even in adulthood. Just things that I never questioned that could be me on the spectrum. And I immediately thought, ‘Oh my God, I have to find out what’s going on.'”
The following spring, in May 2021, Pilatzke was officially diagnosed with autism at age 31.
Pilatzke is among those seeking autism assessments — whether formal or informal — well into adulthood, efforts that appear to be more common for this population.
Generally, autism, or autism spectrum disorder (ASD), encompasses a wide range of conditions characterized by challenges with social skills, repetitive behaviors, speech, and nonverbal communication. There are many subtypes of autism, resulting in a distinct set of strengths and challenges for each person.
According to Autism Canadaone in four people are on the autism spectrum.
‘Masking’ Autism Traits Causes Stress
At the Redpath Center in Toronto, director Kevin Stoddart said more and more adults have requested autism assessments in recent years. The center specializes in the diagnosis and support of ASDs and other neurodevelopmental disorders.
Stoddart said many people are prompted to look into an autism assessment because of difficulties navigating workplace dynamics or difficulties forming friendships and close relationships.
“It may have been kind of a long-term struggle, but they just realize as they become young adults or adults that the issues still persist,” said Stoddart, adjunct professor at the Factor-Inwentash School of Social Work at the University. University of Toronto. .
Stoddart said girls and women in particular are often more adept at “masking” some of the common traits associated with autism, and may come to Redpath having already had experience in the mental health system – that either by doing their own research or by being referred by a mental health professional.
“We know there is emerging literature on masking and autism, and the stress it places on people on the spectrum.”
“I really didn’t know who I was”
Pilatzke has faced mental health issues for years. He was diagnosed with major depressive disorder and later bipolar disorder.
“But for some reason I never felt like it was right, like something was wrong, something was missing and something was wrong.”
When she started reading about autism, she said, so many details about her life began to make sense — including feelings of not belonging and her ways of communicating.
Pilatzke describes herself as “outspoken” and said understanding subtle or hidden meanings in conversations doesn’t come naturally. She said she never had a large group of friends.
Pilatzke said her autism diagnosis was a revelation and it helped her understand herself better.
“Most of the time until I got this diagnosis, I really didn’t know who I was. I was still struggling to figure out who I am and where I fit in.”
Not everyone with autism needs support, and many do not seek an official diagnosis. But Stoddart said that for many people, a formal assessment can be helpful in gaining a better understanding of themselves and the validation that an expert opinion can provide.
That certainly was the case for Pilatzke.
But getting a formal appraisal isn’t always easy, and the cost can be a big hurdle.
The province covers autism assessments for children, and some adults may be covered by the Ontario Health Insurance Plan (OHIP) under certain circumstances, such as if they are enrolled in post-secondary education.
But most people over 18 are alone.
In his office, Stoddart said a full psychological evaluation could cost up to $2,500. Pilatzke, who has health coverage through his employer, still had to pay $1,500 out of pocket.
This cost has been a barrier for Sudbury’s Lara Newell-Barrette. The 53-year-old has several assessments online that show a high likelihood of autism, but she hasn’t had a formal assessment.
Newell-Barrette started thinking she might 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 went out.”
Some of the main traits she sees in herself are high sensitivity and issues with executive functioning, which she says has affected her ability to thrive in the workplace. She is now self-employed, but wonders what might have happened if she had better understood how her brain works years ago.
“You know, I look back and I think, ‘You know what? How could things have been different if I had that awareness and that support?'”
For now, Newell-Barrette self-identifies as being on the autism spectrum. She hopes that one day she will be able to get confirmation through a formal assessment.