Not Exactly Seeing Eye-To-Eye

I feel awkward writing about autism. In an article from the past year, I summed it up nicely with the following footnote:

Because I’ve never been diagnosed as being on the autism spectrum, I usually feel awkward taking on that mantle.

I first entertained the idea that I might be on the autism spectrum after listening to an audiobook version of Neurotribes: The Legacy of Autism and the Future of Neurodiversity by Steve Silberman. It felt like there was a lot of intersection between characteristics ascribed to folks on the autism spectrum and characteristics that I’ve exhibited for a long time. I didn’t do much with that idea at the time—just kind of filed it away in my mental bottom drawer for later processing.

It turned out that “later” was about a year or so later when I had an impromptu conversation with my GP during a routine check-up:

“So you work as a computer programmer?”
“Yeah! [Insert long exuberant description of what I do for a living.]”
“I bet you work with a lot of people on the spectrum.”
“…Yeah, I suspect that I do. Honestly, I suspect that if I were growing up now, I would probably be diagnosed as being on the autistic spectrum.”

In the King James Bible, there’s a wonderful phrase that captures very closely my response to this conversation: “But Mary kept all these things, and pondered them in her heart.” I pondered that conversation a lot in my idle moments. I also pondered the time a co-worker described my sensitivity and reaction to sudden, loud noise as an “aspie trait” and basically everything in this article. I pondered how I avoid situations where the rules aren’t clear to me and how the concept of “special interests” maps extremely well onto my personal experience with topics like computer programming, music, Star Trek, and philosophy. I pondered how I sometimes have a lot of trouble understanding if people who disagree with me are angry with me and how I constantly rehearse mundane interactions with others in my head when my brain is “idle.” I pondered how it feels like a crisis when store clerks break my scripted responses with something unexpected and how I’ve spent significant mental resources learning ways to “improv” my way back on script.

The way I can sometimes hear someone’s words and still need to say, “I’m sorry?” so that can have a second to process their words…
The way I learned to nod and regularly interject “mmm-hmmm” while people are talking even though I listen better when I stare at the floor or a wall in silence while they talk…
The way I can only take in about 50% of a verbal conversation with people other than trusted confidants and friends…
Preferring text-based communication so that I can go back and review what was said after the fact…
Parroting quotes from literature, movies, TV, or video games as a way of referencing entire conversations/feelings by some combination of synedoche and metaphor and then feeling frustrated when this doesn’t serve as communication…
Endlessly analyzing when I get some social interaction wrong and mentally storing multiple ways I could have avoided the mistake…
Faking looking into people’s eyes by looking just over their shoulder…
Needing warning before someone touches me…
Discomfort with touch in general except by trustred friends…
The time a good friend said that they were pretty sure several of us in the friend group are on the autism spectrum and referenced me specifically in the list…

The last year has been a lot of pondering and mentally ticking off boxes. It has also involved a lot of reading about and listening to the experiences of actual people on the autism spectrum rather than merely reading and listening to neurotypical people talking about autistic folks. I’ve seen a lot of myself in what I’ve read—sometimes shockingly so. However, I’ve still felt awkward placing myself in that spectrum. In part, autism spectrum disorder is a medical/neurological diagnosis and not just an identity to be assumed on a whim.

This is the environment in which I met my doctor for my semi-annual check-up at the end of 2018.

We did our usual transactional medical routine: going over blood test results, talking about weight loss, how my medicines are working for me, etc., and then in the space after he asks “Anything else we need to talk about?” when I usually reply (as if by rote) “Nothing I can think of,” I piped up with the response I had been rehearsing off and on in my head for a few months.

“Actually, about a year ago when I was here, you said something that got me to thinking. We were talking about what I do for a living—computer programming—and you mentioned something along the lines of that I probably work with a lot of people on the autism spectrum. That got me thinking and reading, and the more I read, the more I think that a lot of those traits apply to me as well, and I was wondering what steps I could take to explore that further.”
“I’m sorry if my off-handed comment caused you any anguish. I was probably just wanting to talk about my son who is on the spectrum. Hopefully the exploration was more about self-discovery than something more driven by anxiety or anything like that.”
“No no no. I think knowing more about yourself is always a good thing.”
“Well, what in the things you’ve read do you identify with?”

And thus began a ten-minute conversation about various behaviors noted above as well as some I haven’t felt compelled to share publicly. We spent some time digging into details of my scripting of situations, and he asked several poignant follow-up questions, but for the most part, he just made notes and nodded his head. Eventually, I stopped because the words had stopped flowing out of my mouth like a waterfall. We were quiet for several moments. Maybe he was collecting his thoughts. Maybe we were just okay with a moment of quiet after an exchange where we had talked more all at once than we had in seven years of visits combined.

“I’m not qualified to make a diagnosis. It’s out of my area of expertise. But I think you’re very likely on the autism spectrum based on what you’ve described. If you’ll excuse some old terminology, you’re probably what would have previously been called ‘high-functioning,’ though I want to stress that’s a term we wouldn’t use any more for good reasons. The DSM-V loops all of these things together as Autism Spectrum Disorder, even though you probably don’t feel particularly disordered from what you’ve said. That grouping can be good or bad for different people, but the people who work on the DSM-V apparently thought it was a good decision to group them overall. You would probably in past years have been diagnosed with—again, please forgive the use of an outdated term, but I’m trying to provide as much information as I can—Asperger’s syndrome. Feels like it really fits what you’ve described.”

I pause and let it wash over me. In this moment, I no longer feel awkward thinking of myself as autistic. My brain is quiet in the moment and not churning. It feels peaceful and good. The silence feels good.

“In terms of—You asked about steps you could take to explore this further, and…well…As I said, I’m not qualified to make that diagnosis. You’d want to talk to a counselor who specializes in this sort of thing for a diagnosis. They have tests—questionaires like I’ve just been doing with you—that they can score and give you a number. I’m confident that you’d probably be on that spectrum, but you’re also free to, you know—It can be an identity regardless of those tests. If it’s useful to you, it’s fine. You’re not asking for any accommodations. You’ve already built a life that—”
“—Has all the accommodations I need?”
“Yes. Your life is set up for you, and it sounds like it’s working. You mentioned reading about neurodiversity as a movement. It’s partially about finding your place in society and understanding what works for you and understanding that others need to do the same.”
“Thanks. Yeah. I feel better.”
“Maybe there’s value to talking to someone about all of it. Don’t let me talk you out of that. Are you meeting with a counselor?”
“Nah. Not for a long time. Been doing alright, you know?”

We talked for several minutes more. We talked about family members and friends who are on the spectrum. He recommended some books to me. I recommended a few to him. We talked about Ted Talks, Twitter, and the best places to play Pokémon Go in our town. Then, abruptly, we fell back into our pattern.

“Anything else we need to talk about?”
“Nothing I can think of.”
“Then we’ll see you in six months.”

I picked up my backpack and started walking out of the exam room. Suddenly, my doctor stopped mid-stride and turned to face me.

“You don’t ever have to feel bad about not looking me in the face by the way. You probably haven’t noticed, but I don’t do that either. It’s okay.”
“Thanks. I appreciate that.”