In British Columbia, autistic adults are being excluded from accessing supports and understanding that can come with a formal autism diagnosis. You can help AutismBC develop an action plan for supporting these adults by filling out this survey and telling us about your experiences with autism assessments as an adult:
In the past two years, AutismBC has seen a marked increase in the number of requests for support by autistic adults and those that think they may be autistic. There have been a 78% increase in adult autism assessment inquiries, a 600% increase in requests for adult autism services, and our ASD Diagnosis for Adults blog post is viewed over 1000 times a month. Our takeaway is that there is a critical need for autistic adult services and assessments to prevent community members from getting stuck in a never-ending referral cycle.
Unlike other medical needs, adults do not have access to publicly funded health services when seeking an assessment. A private assessment costs between $3,000–$6,000, an amount that is inaccessible to many. In addition to financial barriers, there are challenges in accessing a private assessment, including:
Long waitlists—It is the clinician’s choice, not mandate, to provide these assessments. There is a minimal number of professionals trained to provide assessments, and they are often inundated with requests, and their waitlist grows.
Frequent misdiagnosis—The autism assessment process is complex. There is a high prevalence of co-occurring conditions like depression and anxiety. Many adults share stories of misdiagnosis or need to get multiple assessments to get a diagnosis, particularly women.
Getting an autism diagnosis as an adult supports self-understanding, self-advocacy, and accessing community services. Many people experience a revelation upon being diagnosed in looking back on their lives and their difficulties. They realize there isn’t something wrong with them; they are autistic and part of the neurodivergent community.
Anecdotes from autistic adults
Here are some anecdotes we hear from our autistic adult members. See the end of this blog for ways to get involved.
“I felt the need for a formal assessment with a psychologist trained in recognizing autism in those who identify as female or were born female (aka, assigned female at birth). Autism can present quite differently in those who identify as female, and the female experience of autism has largely been ignored. Thankfully, this has been changing in the last several years, but we still have a long way to go.” — Kristen Hovet
“We knew a psychologist who we trusted and she agreed to test me. I must admit that I was somewhat nervous between the testing and the release of the diagnosis. What if I was just a jerk and a horrible person? I was very relieved when I got the ASD diagnosis and I am forever grateful for the process. It has allowed me to see most of my life in a positive, Autistic mirror.” — Bruce Petherick
“It wasn’t until I had a severe anxiety attack that my aunt thought I should see a doctor and from there I was diagnosed with autism. I wish I had known about my diagnosis earlier. Knowledge is empowering and I could have had the opportunity to access the help and resources I needed years ago, had I known.” — Janette T. Bundic
“Immediately, I was relieved when I got the diagnosis; I could tell that I was different from my peers, and it was frustrating not having any language or concepts to describe why.” — Emma Smith
“When I was young, I was diagnosed with social anxiety to ‘explain’ my reluctance and difficulty forming peer attachments, OCD to ‘explain’ my repetitive and ‘odd’ behaviours, generalized anxiety to ‘explain’ my sensory overload and difficulty finding ‘calm’ not to mention the stims that came with it. Not one person ever suggested autism. However, being assigned female at birth, growing up in the 90’s and not presenting ‘typically’ had a lot to do with that. I didn’t know I was autistic until after my son was diagnosed as autistic. I was 27 when I embraced what that meant—and it was a massive weight off my shoulders. It did come with the burden of having to look back through my life and realize how obvious it SHOULD have been, and what things to have avoided if I had a diagnosis, then.
I did not pursue an official diagnosis. It, unfortunately, costs an inordinate amount of money that I don’t have. It also wouldn’t change anything, as services to assist adults are few and far between. I’ve had to make do on my own.” — Tabitha Shaw
“I went looking for the autism assessment and was admitted to Burnaby Mental Health. It is hard to get an assessment for adults and needing to pay from our own pocket. Receiving the autism assessment makes me relieved and drives me to research more on the autism world. I realize that my brain works differently than others.” — Juliani Kusmanto
I contacted an assessment clinic about getting a diagnosis and the waitlist was one to two years. But when they found out I had just been in the hospital, their psychologist offered to take me. He confirmed that I’m on the spectrum.” —Julia Mitchell
“There’s one thing I don’t understand though, why the age cut off? Autistic folks don’t stop being autistic when they turn 19, I certainly didn’t. Folks that are older need answers just as much, whether that’s for self-discovery, accommodations, or other resources. If someone wants to be assessed, they should have access to do so.
…I think it should all be less stressful. There should probably be more assessors. That way waitlists could be shorter and less reliant on assessors who are known for missing kids…I wish there was an easy way to fix this mess, so no one has to go through an experience like mine in getting an assessment.” — Ann Hoffmann
How Can You Help?
As we can see from community members’ experiences, adult assessments can be life-changing and identity-affirming. Yet there continue to be numerous barriers that prevent many from accessing an assessment and, consequently, the limited support services that become available once a diagnosis is confirmed also remain mostly inaccessible. We need better options for autistic adults seeking an autism assessment and diagnosis, and support services. You can help by sharing your experience in our survey here:
Rhoda is a late-diagnosed autistic woman who has had many challenges in accessing support and understanding. She shares with us what it’s like to be an older adult on the spectrum. Content warning: Use of functioning labels.