I no longer recall exactly how much a modest funeral and burial in my hometown cost in 2009. I just know that it was exceptionally more expensive than an assessment for autism at a private mental health center.
I remember doing that math in the waning moments of what I now recognize as a meltdown.
I’d always had what I used to call “episodes” for lack of any better terminology. Moments where some seemingly tiny thing would set me off and leave me unable to understand or manage my emotions. Or times where the smallest mistake could send me spiraling into self-loathing. But this one, a few months after my 27th birthday, felt different. Scarier.
I’d made a small mistake a few hours earlier — little more than crossed wires and unrealized lunch plans — and lost my shit. No one was angry or even annoyed with me, but I was honestly convinced that I should die to pay for my failings. And with no better options apparent to me, I was working up the nerve to take care of the matter myself.
Somehow, before I could settle on the means, I managed to reach out to my mom. Somehow she’d managed to talk me down. When we were through the worst of it, she kindly added, “I think it’s time that we started seriously pursuing testing.”
“I can’t afford it,” I replied.
“We’ll pay for it,” she said.
“You can’t afford it,” I snapped.
Mom insisted that she and my dad would figure something out. “Whether you are or you aren’t, it will help us to know what we’re working with here.”
I wasn’t entirely sold on this idea. I desperately wanted the guidance and awareness she was talking about. But not as much as I wanted to spare my beloved parents the burden of some medical expenses. Just because I didn’t think that I deserved to die anymore didn’t mean that I thought I was worthy of their help.
So I crunched the numbers and came to this conclusion: If testing could clarify what was going on with me — and what I might be able to do about it — then there was a slight chance my mental state could improve. If it did, then maybe I could spare them the greater expenditure.
I was 27 when I was finally diagnosed with autism. By that point, I’d wanted an assessment for five years and needed it for at least 20 more. There are a number of crisscrossing and snowballing reasons why it took me so long to get there.
There was nothing particularly hidden or unique about my autism when I was growing up. Everything from my sensitivity to getting my nails cut to my inability to navigate shoelaces to my overly formal manner of speaking to my all-encompassing interest in the Titanic were textbook symptoms. I simply never encountered anyone in my small hometown in the late 1980s and early 1990s who knew enough about autism to know what to look for — or that they should be looking for it in a girl.
The general consensus among education and medical professionals and anyone else who felt the need to weigh in seemed to be that … I was smart. I was different because smart people are eccentric. I was struggling socially because everyone was jealous of how smart I was. It would all sort itself out when I got to university and found my kind.
That was not the case. That is not what happened.
As general knowledge about autism (slightly) improved, resources became my next hurdle. I am extremely grateful for the publicly funded health care that I have in Canada, but I am also aware of its major limitations. And I am painfully aware that those limitations include almost any meaningful or accessible support for autistic people over the age of 18.
Canadian health care can be wonderful if you have a recognizable ailment with a relatively straightforward treatment. Whether I had a simple bacterial infection or a life-threatening viral illness — or even a seizure in the middle of sex-ed class — the process was simple and accessible. I saw my doctor. I got whatever testing I needed, including referrals to any specialists I might require. Based on the results, I received whatever treatments and prescriptions I needed, with follow-ups as necessary.
Anything less definable than that becomes more hit-and-miss in terms of quality and coverage, especially when it comes to something related to mental health and/or disability. By the time I realized that I checked off almost all of the diagnostic criteria for autism — and was pretty sure that any professional I saw would agree — I had aged out of the majority of resources that were covered by health care. I was at a loss as to how to access anything that might be left. If there were any form of testing or treatment for adults at the time, it was far beyond my research capabilities. Everything I read on autism in Canada suggested that paying for private testing was my best course of action.
Which meant money was the primary barrier. I couldn’t afford testing because I was starting to have issues maintaining gainful employment as a result of my undiagnosed autism. My occasional writing assignments weren’t paying the bills. I was landing gigs as a fitness instructor but was eventually let go from most of them — usually for “not connecting with the clients well enough.” Efforts to secure anything more long term in either media or fitness never made it past the job interview stage; I never heard back from most of my prospective employers. The nice ones gave me vague feedback like “we didn’t feel you fit the culture here.” (I was far from alone. Unemployment statistics for autistic adults are staggering.) My parents couldn’t afford to help me out in part because my autistic father, who was also undiagnosed at the time, had autism-related work issues of his own.
I was stuck in this vicious holding pattern for years. I couldn’t pay for autism services because I couldn’t figure out what about me might be putting employers and clients off. I couldn’t figure out how to improve my employment situation — or address the impact this constant rejection and failure were having on my mental well-being — without any guidance from an expert. I couldn’t figure out how to find or pursue alternate resources that might be more affordable because I was struggling with executive dysfunction. I didn’t have the professional assistance that could have helped me figure out how to manage that — or even explain to me what it was and how many autistic people have problems with it. I couldn’t get help because I’d never had help.
My rule-following autistic brain wouldn’t even allow me to think of myself as really autistic until someone officially diagnosed me as such. I had it in my head that it would be presumptuous to seek out any materials or communities for autistic people if I wasn’t a certified real autistic. So I remained confused and alone.
During that time, an autism assessment became an abstract fantasy to me: Something I’d treat myself to if I ever achieved any level of success. I’d daydream about paying an expert to confirm a fundamental piece of information about myself that I was 99.9 percent sure I already knew the same way I once imagined buying an open-concept mansion if I won the lottery.
I imagined that it would be freeing and life-changing. I’d learn how to fix myself and become a functioning member of society. Other people might be more patient with me if they knew what I was up against and how hard I was trying to exist in their world! Maybe I could forgive myself for all of the mistakes I’d made when I didn’t understand myself. Hell, maybe I could even give myself a little credit for any progress I made during those years.
In the meantime, I figured I’d probably get by okay. If I’d made it this far, then maybe my Schrödinger’s autism wasn’t that bad. Surely I could handle it.
That was not the case. That is not what happened.
Instead, the holding pattern wore away at me. The haphazard coping mechanisms I was employing to handle my not-so-bad autism crumbled, and I had a life-threatening crisis. It wasn’t prosperity that got me my dream assessment; it was desperation.
The process itself was about as anticlimactic as an arguably life-saving event can be. Mom and I went to a nondescript midtown Toronto building and were led into a quiet office with soft, indirect lighting. (Although I never asked, I’m assuming these design choices were a conscious effort to cater to a clientele with a wide range of sensory issues.) A man with an equally gentle voice introduced himself, outlined the process, and asked me to explain, in my own words, why I was there.
I don’t recall exactly what I said, but I think it was something like, “Well, there are a number of reasons but, most recently, I wanted to kill myself because I missed a lunch date and I don’t think that’s appropriate.”
I filled out some written questionnaires. I answered a bunch of verbal ones. We covered everything from bullying and toilet training to the repetitive way I play with my hair. Mom provided additional observations from my childhood.
“Watching Sarah try to socialize when she was little was like watching her try to play jump rope games,” she mentioned at one point. “She’d watch and watch and watch, but she could never figure out when it was her turn to join in.”
“I still haven’t figured that out,” I added. “The talking or the skipping.”
Two weeks later, we returned and were informed that I was, in fact, autistic.
Those two appointments came to $500 Canadian. My parents had budgeted for more, originally planning to follow through with a more clinical round of testing, but the assessor suggested investing that money in therapy with an autism specialist instead. So we did.
The fallout from this grand revelation didn’t exactly live up to expectations, either. The clemency I’d imagined never came. From me or anyone else. When I told people — family, friends, random people who made the mistake of approaching me at parties — about my new diagnosis, they were mostly confused and suspicious. Was I sure I was autistic? I didn’t seem so. There were labels for everything these days. Wasn’t that just a label rich parents bought to excuse their kids’ poor discipline?
In the months that followed my diagnosis, I worried that I’d wasted my parents’ nonexistent money. The way I saw it, they paid for little more than my right to call myself autistic, and I still couldn’t make people understand me. Or believe me at all, in some cases.
The only immediate benefit seemed to be that, when people accused me of pretending to be autistic for attention (which still happens regularly), I could say, “I was diagnosed!” And it shut about 40 percent of them up.
Through a number of meandering baby steps, I was able to see more and more value in the expense and the experience.
First, I made a little progress in therapy. With that came a new outlook: Maybe I’d spent the money on validation. On finally having someone confirm something I’d known about myself for so long. Maybe we’d even invested in my long-term well-being. I now had a valuable piece of information that could help me figure out healthier ways to take care of myself, navigate a world that wasn’t entirely in sync with my wiring, and manage my reactions to disruptions like thwarted lunch plans.
Once I felt like I was allowed to use the word, had gained some post-diagnosis perspective, and had the energy to do something with my life other than basic survival, I started to write about my autism. Through that writing, I connected with other autistic people and a few great allies. I learned about the ways in which we were similar and the differences between us. And one of the topics I learned about was testing and diagnosis.
While many of the nonautistic people I talked to in those years seemed to assume that autism was at risk of being over-diagnosed, I was more worried about who was still being left behind. I wasn’t seeing rich people buying autism labels for their kids or people pretending to be autistic for fun. I was seeing the same lack of awareness that failed me decades ago still failing other autistic people — especially autistic people of color. I saw people who had done years of their own research being written off as fakers because they couldn’t access or afford an assessment. I wondered how my life might be different if I had been diagnosed earlier. I also wondered what could have been prevented if I’d felt like I was allowed to consider myself autistic all along. Now I wonder about what I can do to prevent other autistic people from experiencing my lowest moments.
When I became a diagnosed autistic, my opinions on matters revolving around diagnosis and money magically began to hold a little weight with general audiences. In a sense, my parents bought me a license to talk about my life and a chance to make life at least a little less harrowing for people like me.
Sarah Kurchak is a writer living in Toronto and the author of the forthcoming memoir I Overcame My Autism and All I Got Was This Lousy Anxiety Disorder.