Baby Steps to Diagnosis: Part 4 (The Diagnosis)

If you’ve been following along with the Baby Steps series (or longer than that), you can maybe imagine the buildup to my results appointment. It took about four weeks following my in-person testing — I was expecting three weeks, so that extra week was painful and I did end up sending a check-in email in case I fell through the cracks. My video call was set for 4:00 last Saturday, and at 3:58 I got the email with the attached report PDF and meeting link. (He didn’t want me reading the report before going through it with him.) I had my extra monitor set up to my laptop so I could instantly download and open the report on the second screen, scrolling for the diagnosis before clicking that meeting link. How much can one person sweat in two minutes? A lot.

If you want the doom & gloom version, go ahead and search the diagnosis code 299.00 (F84.0). But if you’re here for an honest take on how having an answer to questions you have been asking yourself one way or another for forty-plus years… Hi. I’m Michele and I’m autistic.

The doctor said there were two ways we could go through the report, skip to the end for the diagnosis and then go through the findings or start at the beginning. Obviously, I’m a “skip to the end” kind of guy, so to break that tension, he said I have “Autism Spectrum Disorder, without accompanying intellectual impairment and without accompanying language impairment.” And then how did I feel about that? I felt OK about that. It was a relief because I had done all this detective work and introspection and had come to this conclusion on my own over the course of a year, really, so if I had been wrong, then what?

So we went back to the top of the report. I have deficits in social communication and interaction, and restricted, repetitive patterns. The keys here that make my presentation ASD are that it:

• was present in early development;
• causes clinically significant impairment in social, occupational, or other important areas of current functioning; and
• is not better explained by other factors.

He ran through the summaries from each of the tests I took (see Part 3 for a breakdown of those tests), and acknowledged that I have gotten this far by masking and trial and error and finding shortcuts and systems that work for me. My partner’s answers to the questionnaires showed that we’ve sorted out a balanced life and have figured out our roles, and that he doesn’t see me as a problem. Tom likes my weird sense of humor. He doesn’t see any issues with my function-over-fashion lifestyle. And he’s the naturally friendly one, our social ambassador.

My doctor’s recommendations are that I find a therapist with autistic experience to work through some of these revelations, maybe for six months to a year. He doesn’t see the need for a psychiatrist or medication — I don’t have an ADHD diagnosis or general anxiety. His take is that there’s no way I haven’t piled on trauma from a lifetime of trying to get by in a world that was not made for me. There was also mention of my history of severe depression, which I actually kind of shrug off, because I think those bouts of “depression” were primarily burnouts or shutdowns. I don’t think I’m in any kind of real danger here.

You might notice this is all social deficit-based, that basically the only important part is that I can’t interact with the rest of the world as well as most people. That’s the part that’s important enough to give it a diagnostic code. It doesn’t at all deal with coexisting conditions, 99% of the traits that the people in my autistic Facebook groups discuss every day. What I would really like to find is an autistic therapist, someone with whom I can spend some time and figure out all those little bits, the coexisting conditions. Is my inability to understand emotions and my subpar sense of imagination alexithymia? What’s the deal with my inability to describe or draw something I’ve seen? Like, I don’t have face blindness–I can recognize people–but I couldn’t possibly describe them for a police sketch artist. How do you test for dyspraxia? Is that why I bang my arm into half the doorways I walk through and am a C- parallel parker yet I can Tetris like a champ and am the absolute king of packing moving trucks? Why do I have to chew my food equally on both sides of my mouth and keep track of where a sidewalk crack hits my left foot so I can make sure my right foot steps on a crack in the same place? What’s the deal with my forgetting to pee for ten hours straight? All commonly reported by autistic people but not actually autism itself?

Also, I think an actual physical or at least physical history should be part of this diagnosis process. There were a whole lot of physical health questions on the questionnaires, and as part of my results it mentioned I maybe overreported physical conditions, especially neurological ones. Ummm, I have a history of seizures and have had migraines for most of my life and rheumatoid arthritis for more than a decade. I’m 48 years old. No overreporting — like most people my age with my medical history, I usually don’t feel awesome. I think maybe those questions were there to gauge whether you were exaggerating when answering the rest of the questions. I could have asked about that, but honestly, I was just ready to get off the call and read through everything myself. Whenever I find my therapist, I’ll go through the whole report with them.

So, as limited as the diagnosis is and how much work went into it, was it worth it? Yes, absolutely. It’s been about a week since my appointment and I feel so much lighter. I am making private declarations, like “I hereby pledge to stop worrying about making eye contact.” Or “I will spin my spinny ring or rock back and forth in public when I need to and not give a damn.” When I feel like I’m struggling with communication I will tell the person I struggle with nonverbal cues and that they’ve just gotta say what they need to say. And I will carry my earplugs or headphones with me at all times. (The sunglasses have always been a “can’t leave home without them” item.)

I’ve started telling people who’ve been following along, and it’s wild that not a single person has pushed back or questioned the diagnosis. I see posts from folks all the time who get zero support from their families or friends, people who disrespect their struggles or request for accommodation, and it’s really sad. I am grateful that I’ve been able to curate this group of people in my life.

And I guess I’m glad that I had the strength to go through this process in a somewhat public way. There’s a lot more to work through, but even so far, I’ve been able to share my experience in real time and either help others who find themselves in a similar position…or just explain to family and friends why I am the way I am, because I know I’m not always easy.

Finally, I’ve been tallying up the costs here, and it looks like my after-insurance, out-of-pocket total for this diagnosis will be $40. If I didn’t have insurance, it could have run over a thousand. I will never not think about that when someone says they’re self-assessed. It’s America, where healthcare is still not accessible to all, so I am lucky to currently have a job that offers me affordable insurance that happens to have good behavioral health coverage. And apparently, I’m proof that self-assessment can be pretty accurate.

Now to celebrate with this hastily decorated frozen vegan cheesecake. (It’s been too hot to bake and I’m too cheap to have a fancy vegan cake made for me.)