Ann Hoffmann discovered she's autistic when she was 17 1/2 and has been seeking an official diagnosis. She is a second-year university student from Vancouver Island and a participant of AutismBC's Gathering on the Spectrum group. In this blog, she gives a first-person narrative of the assessment process.
“The Curious Incident of the Dog in the Night-Time”
When I was 17 and a half, the way I saw myself (and the world) shifted rather dramatically. It all began with reading “The Curious Incident of the Dog in the Night-Time.” It wasn’t my favourite book, but I couldn’t forget about it after I’d finished. It was the first representation of autism I’d really seen. Sure, I knew autistic people in my life, but I didn’t have any understanding of why they had that label or what it meant.
Specifically, the trait portrayed in this book that caught my attention was the difficulty with facial expressions. I hadn’t realized other folks actually had some understanding of facial expressions. That was the way with a lot of things. I couldn’t really comprehend people thinking all that differently than me, which just made neurotypical folks’ actions even more confusing.
Since I couldn’t get the book out of my head, I began investigating online. At this point, I was very focused on my difficulty with facial expressions and I was trying hard to find an explanation other than autism, but I just kept ending up there. I found things like alexithymia, but, for whatever reason, that didn’t satisfy my investigation. Eventually, since I kept finding myself at pages on autism, I decided to seriously look at what autism is.
The decision to get assessed
At first, it was hard to admit how well autism fit. This was somewhat because I didn’t realize that I did some of the things and somewhat because I didn’t think of the things I do as “unusual.” To go over all the things that autism explains about me would take several more pages. After a month of thorough investigation (every free second of my time) on the internet and in books from the library, I brought up the subject with my mom. I gave her a four-page letter explaining why I thought I could have autism. A week later, we spent an entire day discussing the letter. In the end, she agreed that it was possible; however, since I was already almost 18, we concluded that I probably couldn’t get a public assessment. Therefore, if I wanted an assessment, I would get one after university once I could afford it.
Despite our conclusion, an appointment with my family doctor the following week changed my plans.
My doctor referred me for a public assessment and to an “expert” who would have more weight in referring me. That’s where things started getting rocky. The person I was referred to didn’t talk to me much; he just talked about me with my mom as though I wasn’t there. He wouldn’t really talk about autism, despite that being the reason I’d been referred to him. He asked my mom four times, twice while I was in the room, whether I’d hit my head as an infant. In the end, the only talk of autism was when he said my social troubles were explained by tight Achilles’ tendons (because of sports?), the repetitive behaviours of Attention Deficit and Hyperactivity Disorder (which I do not have), and that anything else was anxiety. It was a horribly stressful experience. I hardly spoke after; I was in quite a state. I went to my room the moment we got home (at 6:30 pm), covered myself in stuffed animals and blankets, turned off the lights, and covered my ears with my pillow. I remained that way past noon the next day.
After some months and a parent interview, I saw my assessor. The assessor was nice, and the appointment went well. Portions of it made me feel quite incapable, but it is what it is. I did a good job of just being me; she made it easy. She told me that based on the appointment, she’d have diagnosed me with autism. This would be quite a short, pleasant story if that’s where it ended, but it’s not. She said there were discrepancies between the appointment and the parent interview. Specifically, once when I was about two, I mimicked something my mum did. The other discrepancy was that my mum couldn’t remember a whole lot from my childhood (a decade and a half ago), which she apparently should have had I been an “unusual” child. In reality, as the eldest child, she didn’t really have a comparison. I was just me. Everything I did or didn’t do was “normal” for me. Really, that’s just the way my mum thinks in general. The assessor told us she wanted to refer me for a second opinion on whether I have autism, and she also wanted me to see a speech-language pathologist.
“He didn’t talk to me much, he just talked about me with my mum as though I wasn’t there. He wouldn’t really talk about autism, despite that being the reason I’d been referred to him.”
I don’t remember much of the following appointment. I was kind of in a state for it. We found out when we got there that it was just an anxiety assessment, which isn’t something we were told or agreed to. We spent multiple days travelling to go to this appointment under false pretenses. Honestly, had I known, I wouldn’t have gone. If I knew I could say no to the appointment, even once it had begun, I probably would have. Without the false pretenses, we’d have said no right away. He told me he wouldn’t give his opinion on anything but anxiety. That’s all I remember of that appointment.
The appointment with the speech-language pathologist was the only bright spot in the whole assessment. She was really nice and actually knew her stuff. It was the only appointment that didn’t upset me. Apparently, my speech is slightly below average in comparison with a 16-year-old, which is fascinating to know.
Next, I saw the first assessor again. Before the appointment, I faxed a letter to her (I didn’t think it would hurt to explain what she had got wrong). It was seven pages long, and I’d been writing it for a year, having started it not long after the first awful appointment.
“Basically, she diagnosed me as matching all the traits of autism in the DSM-5 while avoiding the word autism.“
There were a few things I took away from that appointment. First, the assessor told me that she didn’t think a person with autism could write such a letter. Second, she told me that I matched the DSM 5 but not her checkboxes; she later took that back. What stood out to me the most, though, was that she told me that she’d diagnose me with anything but autism if she could; not if it was a better diagnosis, just if she could. Additionally, she misinterpreted several things, seemingly intentionally as she ignored all explanations of why the interpretations were incorrect, from both my mum and me. Further, in the letter we received from the assessor, there were multiple details that weren’t simply misinterpretations but completely false information that did not come from us. In the end, she diagnosed me with anxiety and executive functioning issues. Basically, she diagnosed me as matching all the traits of autism in the DSM-5 while avoiding the word autism.
There was one particular comment from her that I found odd. A few times mentioned that I feel different from my peers, but I honestly don’t know where she got that. Like I mentioned earlier, I struggle to comprehend others thinking differently than me but I don’t really comprehend the difference enough to generally feel different. That’s not to say that there aren’t times when I feel different, but it’s not a major thing for me. It came across as, I don’t know, patronizing.
I was in a state after that as well, but it’s hard to define since I was also struggling with the prospect of leaving home. It was a weird time. Over a year of stress for nothing.
However, in a way, it was something. The effort she went to was ridiculous and wouldn’t have been necessary if I wasn’t autistic. It was enough to prevent self-doubt, for the most part at least. It provided further certainty. I’ll probably get reassessed one day, when I can afford it and have gotten past the stress the first assessment caused. My primary annoyance now, beyond the wasted time and stress, is that my doctor has to record information about me we both know is incorrect because a specialist said so.
Honestly, the whole experience sucked.
The funny thing is that the more I get misdiagnosed, the more my certainty increases. [I was] 95% sure before the first “expert” and 99% after. After this last assessment, it’s 100%. I think a small part of me didn’t want to receive an autism diagnosis, to have there be another explanation that fits better. But no professional has managed to provide me with another explanation that I can’t disprove.
So yeah, I’m autistic. I don’t have an official diagnosis, though, and that’ll likely remain true for years to come.
I’m not sure if I’d have attempted to get a public reassessment if I was younger. This experience has definitely left a bad taste in my mouth. and there’s one thing I don’t understand: 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.
“…why the age cut off? Autistic folks don’t stop being autistic when they turn 19. I certainly didn’t.”
As for how we fix this, I don’t know. I think the people that are supposed to be experts should know more. I think the general public should too. 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 don’t know [the answer] though – wish I did. 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. I’m optimistic, but I don’t have the answers.
Over the last two years, AutismBC has seen a 70% increase in inquiries about adult assessment and a 600% increase in inquiries on the provision of other adult services. You can help by sharing your experiences with us in this survey here: Adult Assessment Survey
To find out more, read our blog on Adult Autism Assessment here.