This Thunder Bay woman with autism, ADHD says she was misdiagnosed for decades and is now calling for change
Professionals say adult autism assessments are costly and hard to come by
Annie Kent says she felt like an alien when she was a child, and after decades of what she's calling misdiagnoses, the Thunder Bay, Ont., woman finally found out why.
Just over two years ago, she was diagnosed with attention deficit hyperactivity disorder (ADHD) and autism.
"I always knew that there was something different — but as a very small child, of course, I lacked any words to try to explain how I felt internally," said Kent, who is celebrating her 40th wedding anniversary later this year.
Diagnosed with learning disabilities in her youth, she still always did well in school. She was admitted to university to study psychology at 16 and received her master's degree five years later.
"I had a few jobs that didn't last too long because it seemed that while I had a lot of theoretical knowledge, I didn't seem to have the ability to apply it in a real-life practical situation," she said.
"That kind of began my slide down into needing the mental health system for support — and along the way there, of course, I accumulated a lot of misdiagnoses because people at that time really didn't even consider the possibility that girls could have autism."
While researchers are making strides in bridging the gap in autism diagnoses for women, experts say it is still harder for professionals to detect neurodivergence — meaning the person's brain functions differently from the typical brain —among females.
"There's enough research out there showing that the later you're diagnosed, the more mental health issues you have as an adult," said Dr. Beth Kelley of Queen's University in Kingston, Ont. "It definitely is harder for women to get that diagnosis in childhood."
Barriers to diagnosing women and girls
Kelley, an associate professor of psychology and psychiatry and neuroscience studies at Queen's, is involved with the Province of Ontario Neurodevelopmental Network.
She said these are the main reasons girls struggle to get an autism diagnosis:
- Diagnostic instruments that many professionals use are based on historical research of autism in males, not females.
- Clinicians associate autism as being a male condition due to implicit biases.
- Females tend to be better at camouflaging, or masking, their symptoms at a young age because of how they are socialized.
This has resulted in more women receiving a diagnosis later in life, which can yield mixed feelings. While some people accept the diagnosis and feel validated by it, others experience resentment after going so long without answers, Kelley said.
Kent suspected she had autism after reading stories online from other women with autism, especially those diagnosed later in life, and called the experience "validating."
More needs to be done to educate mental health clinicians about autism and give them the tools to confidently diagnose adults, Kelley said.
"We need to do more research and perhaps develop instruments to diagnose that are specifically for girls so that they can get diagnosed earlier," she said. "Also making people aware that your child may be camouflaging."
Adult assessments costly, hard to find
Autism assessments for adults cost thousands of dollars and usually aren't covered by the Ontario Health Insurance Plan (OHIP), unless someone is enrolled in post-secondary school.
After Kent was quoted around $5,000 for an assessment locally, she sought an online assessment through Embrace Autism that she said cost her about $2,000.
Sullivan and Associates is the only psychology clinic in Thunder Bay that provides in-person autism assessments for adults.
Jasmine Peterson, a registered psychological associate with the clinic, said assessments can cost upwards of $3,000. She encourages clients to have an initial consultation with a clinician to help them decide whether it's worth it.
"The benefits for an adult would be things like if you're struggling in the workplace or if you're struggling because you're trying to obtain a higher education — sometimes having that diagnosis will give you access to certain resources," Peterson said.
She has noticed more adults referring themselves for autism assessments after seeing others share their experiences on social media, and sees that as positive in reducing the stigma around neurodiversity.
Lack of support for autistic adults
Alina Cameron of Thunder Bay is president of the Ontario Autism Coalition. Her daughter has autism, and although her symptoms were easier to detect, Cameron has heard from hundreds of families who struggle to get their female children diagnosed.
While there are more resources targeted at children, "after the age of 18, people tend to fall off a cliff," Cameron said.
The coalition has set up a new adult services working group to advocate for more resources for autistic adults. This involves working with Community Living Ontario, pushing for a higher Ontario Disability Support Program rate, and improving living and working conditions for autistic adults, she said.
"We know that hitting younger children with really important supports and services and coping strategies and therapies can lessen their reliance on social systems in the future.
"But there are some people who … will [always] need a certain level of support in adulthood — and those people still deserve to be part of our community and part of Ontario," Cameron said.
Push for neurodivergent solutions
After receiving her diagnosis, Kent said, she has been doing more research on autism in women and girls. It inspired her to create a website to share her findings with others.
Alina Kislenko is an asstant adjunct clinical professor with McMaster Medical School in the Psychiatry and Neuroscience and Behavioural Neuroscience department in Hamilton. She also runs a counselling centre specializing in ADHD and autism, where all the practitioners are neurodivergent.
Kislenko also said she faced many misdiagnoses before she was diagnosed with ADHD and autism in her mid-twenties.
"This is such a common story, and it's a sad story of just how much time and money, and gaslighting and professional incompetence we encounter during that process," Kislenko said.
She wants to see more done to support solutions made by and for neurodivergent people, including education programs that better support their professional development.
"Often, the clients come to us and they're just finally relieved that we're using the language right, that we understand their problems on a fundamental level and not just giving them new problems with our solutions."
Policy changes underway
The federal government is currently developing a National Autism Strategy, informed by a report from the Canadian Academy of Health Sciences in spring 2022.
Last July, Ottawa also announced it would spend up to $500,000 for the Autism Alliance of Canada to work with the Pacific Autism Family Network and Autism Speaks Canada to develop a National Autism Network.
Anna Maddison, senior media relations adviser for Health Canada and the Public Health Agency of Canada (PHAC), provided an emailed statement to CBC News on Thursday.
"The purpose of the network would be to bring together the skills and resources of those with lived experience, autism-focused organizations, and other groups that support autistic people in Canada. It would also support implementation of Canada's national autism strategy," the statement said.
PHAC is working on publicly releasing the strategy, but Maddison didn't give a timeline for its rollout.
However, an online survey was made available last summer where people could give feedback. The Ontario Autism Coalition also provided input.
Kislenko said it's critical for the strategy and network to be informed by people from diverse backgrounds who have autism.
While Kent said she feels hopeful about the federal government's strategy and upcoming changes to the Accessibility for Ontarians with Disabilities Act, "legislation alone is not going to change anything."
"People need to understand that [autism] is not a mental illness. It is a difference in the way that our brains develop," she said. "I'm a human being and I have so many skills and assets that I can offer … and so do a lot of other [autistic] women."
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