Saturday, 31 March 2018

Autism Diagnosis at 60

I am autistic. Under DSM IV I'd probably be considered to have Asperger's Syndrome, but I was diagnosed under DSM V at age 60, so I have Autism Spectrum Disorder. I have thought about posting something for several years, but am only getting around to it for this April's Autism Awareness Month.

The thing that finally gave me the extra push to write was a recent incident where among a group of friends I noticed that someone was suppressing tears, and after they left mentioned to someone that we should pray for them. When they said they hadn't noticed, I replied that I was amazed the autistic person in the group was the only one who had. They replied "but you're not very autistic."

My reaction, which I managed not to blurt out, was "You don't live inside my head."

They thought they had evidence. First of all, autism is classically considered to be a spectrum (note the name of my diagnosis), which implies "more autistic" versus "less autistic" or "high-functioning" versus "low functioning." People say "it's a spectrum, and we're all on it." But I've come to understand that the labels are ablelist, and should be translated as "more (or less) disturbing to neurotypicals." And the spectrum idea has two flaws: First, ASD is actually a collection of separate symptoms, amounting to several different qualities or spectra, and different people have different aspects in varying amounts. Second, the spectrum idea lets people forget that different points on it have qualitatively different effects on autistics' identity and life in general.

I first suspected I was autistic when my daughter was diagnosed seventeen years ago. My wife did what we nerds are prone to do: she read a book on Asperger's Syndrome. As she did so, she kept saying as she read each new section, "This sure sounds like David." But psychiatrists usually don't like to diagnose adults. The symptoms are much less obvious in many adults, to the point where some people say "they were autistic as a kid, but they grew out of it." What I think such kids really did was learn to hide what is really going on inside and pass as neurotypical, or nearly so. When I was diagnosed early in 2015, it was because I went to a specialist in autism, and they based their diagnosis on my self-reported life history instead of how I present as a "mature adult."

I think there are several reasons why people think I'm "not very autistic."

Number one, I've always been verbally articulate, and some people think autism only applies to those who don't communicate. They're amazed when they find out that plenty of people who don't speak are quite articulate when they type. There is a Certain Autism "Support" Group that won't listen to articulate autistics because we "aren't autistic enough."

Number two, I present as fairly empathetic a lot of the time (but certainly not always), and supposedly autistics aren't. What's really going on is that autistics often really do care about other people, but have a hard time reading and understanding their emotions and mental states (and our own, too). We have to ask, and it often doesn't occur  to us to inquire about how people are doing. I've trained myself to ask, and I have always cared about the answers.

Number three, I've trained myself to make eye contact. Supposedly people who don't make eye contact are "shifty" or "untrustworthy." But sometimes it's fake. I have a lot of trouble with crowds, so being in the middle of one is tension-making. When I lecture, I fix my gaze over the audience' heads, so I make them more comfortable by appearing to look at them, reducing my stress while affirming that I acknowledge their existence.

Number four, Aspies famously go on and on about their favourite subject; I've learned to suppress that in most cases.

There are plenty of things going on in my head that are still symptoms of autism. I'm very literal-minded; a co-worker back in the 70's said I was easy to tease because I always believed people meant what they said. Sometimes I answer rhetorical questions, and sometimes mistake small talk for actual inquiries about my current state. But much worse for my career, I always believed reviewers were right when they rejected my papers; they presented articulate reasons, and I accepted those and gave up without realizing that publishing is in some ways a dominance game where you need to fight back. Thus my publication record was weak by the standards of 30 years ago, and totally inadequate now. I had considerable difficulty getting tenure and promotion to Associate Professor.

I am sensitive to overstimulation, which is probably part of my reaction to crowds (though crowds feel like pressure on the outside of my head instead of stress on my ears). Bright lights are enough of a problem that I don't like being out in sunlight, and a disco scene or strobe lights are intolerable. There's no way I can cope with UltraAVX.

I still hyperfocus on things, though not for as long as when I was a kid, and I have several different things I can switch among. If I am interested in something, it is easy to keep at it for hours without noticing time passing. On the other hand, if I'm not interested in something, I have a hard time forcing myself to do it. I was pretty much a dilettante back when I was a kid, and much of the way through university. Probably why I took 7.5 years over a 9 year period to finish my PhD (the other 1.5 were working in industry). I can play a particular video game for weeks, then suddenly find I can't concentrate on it.

When there is something I want to say, more often than I'd like I just say it. Some of this is that males are socialized to be assertive, but it's also sometimes characteristic of Aspies.

I care a lot about order in some aspects of my life. The dishwasher has to be filled in a very particular way. I'm convinced that it's the right way, the efficient way, but other people have no trouble filling up the dishwasher some other way when I'm not around to compulsively rearrange. I see this as akin to one of my kids lining up all the shoes from our closet in a tidy row in the living room. I compulsively keep track of my hours at work, since my doctor wants me to limit them for mental health reasons, but I'm more fanatic about it than I need to be. On the other hand, my desk is a mess.

The stress of having to pretend to be "normal" is one of the reasons autistics are more prone to depression than neurotypicals, so it was likely one factor in my 15 years of disability leave for refractory chronic major depression.

And sometimes, I do lose my words, as though something suddenly turned off the verbal part of my brain.