On how I found myself on the spectrum

Frankly, what made me discover that I was autistic - or “Aspie", as I like to put it - was my seemingly ever-growing talent to piss off my then-husband. Unwittingly - without even trying. Actually, it seemed I could piss him off exactly by trying to not piss him off.

My son had been reading about autism for a school assignment so, over Christmas break, I picked up Neurotribes, by journalist Steve Silberman. It was the story of the discovery of “Asperger's syndrome”, then “autism”, and how the two were most likely the same thing. I was amazed to see all the quirks of my childhood described in detail, to the point that I started writing them down as I read on: it became a growing list of all my "features" handwritten inside the cover of my copy of the book.

I got curious, and lucked out in finding a therapist specialized in helping adults on the spectrum navigate the neurotypical world. More than that: she agreed to see me right after Christmas. The New Year that followed was a new year, indeed.

Life all of a sudden made SO much more sense.

Speaking is a risky business

I grew up knowing that I was weird, and in oh-so-many ways. I was the four-year-old who carried a deck of cards in her little handbag and pulled her grand-aunt to the side to play cards at a grown-ups party. I was two years younger than my cohort at school, because I learned to read over the summer that I turned 4, and teachers saw no way out of enrolling me in 1st grade at age barely 5 - but then all I could do was cry when second grade started with me separated from my best (and as far as I remember, only) friend Renata, and couldn't find the words to explain what was going on. No wonder: as a small kid, I had the habit of going mute and hiding behind the curtains at the slightest emotional stress. My mom would kneel before me and plead with me to tell her what was going on so she could fix it. But I could not find words to speak, so we had to play a guessing game where she had to think up alternatives to explain my chagrin, and all I could do was nod yes or no, as tears rolled down my cheeks. My mother had to speak for me.

It didn't help that speaking often got me in trouble. In school, I learned quickly that knowing the answers pissed off my fellow classmates, and so did following the rules. Trying to be helpful and explain to them what seemed pretty obvious backfired almost every single time, which taught me that there was a thing called “coming across as a smart-ass”. Since opening my mouth tended to make me look as a smart-ass, the obvious thing to do was… not talk.

So I didn't. Not that it made much of a difference in my number of utterances; the point of small-talk baffled me then, as it does now. Ask me about my interests, though, and I turn into a chat box.

I was a bully magnet and didn't know how to talk back to the bullies - or, most likely, I was a bully magnet exactly because I didn't know how to talk back to them. One of the bullies was my younger sister, a perfectly normal, adorable, communicative and quick-witted girl who naturally became the charming gem of the family, while I was the wild, unapproachable creature [bicho-do-mato] who took people literally, never got sarcasm, and often opened her mouth just to make inappropriate questions or remarks. Growing up, my mother had the terrible idea to throw a joint birthday party for the two of us: it was attended by some twenty of my sister's school friends, and… a single one of mine. I didn't know what to say to people socially. I seemed to piss them off by stating what I thought were facts and answering their questions simply and truthfully. At the same time, my mother chastised me for making statements that made me sound like I knew The Absolute Truth [”a dona da verdade"] - when to me it was obvious that my statements were simply What I Thought About The Matter. I couldn't win.

So I thought all that, and so much more, was just me being weird. Inappropriate, of my own fault. Life luckily threw my way some people who didn't seem to mind me being weird, or even enjoyed that at least for a little while. Those who enjoyed it for a long while remained my lifelong friends; the others fell by the wayside.

Fast-forward to my 40s, married to someone who was growing impatient that he wanted me to know that when he said A, he actually meant B - when if you tell me A, all I hear is A. On top of that, I had moved recently to a new university in a new country speaking a non-native language and with new rules of engagement in faculty meetings. Many of those rules are tacit, of course, and it is on the faculty to know them already - like, if you have negative observations about a job candidate, you don't voice the negative observations; you simply don't make enthusiastic enough positive observations, and that seems to be code for “not in favor". Argh. That was far too sophisticated for me, and exhausting. I once came home with a stress-induced fever from a particularly difficult faculty meeting where our department Chair had an opinion on a serious matter but did not wish to voice it as his own, so he was tacitly asking us, the faculty, to make it ours and voice it for him. I spent most of the meeting confused, until I realized what was going on and could finally say something helpful. I got home and slept for 14 hours. Being a weird adult in a world of normals was exhausting.

How can a neuroscientist not tell she's autistic?

Being an “autistic adult”, however, changes everything, for the difference from a “weird adult” is having the knowledge that one is autistic. I am not randomly weird. I am not difficult or flawed. I don't choose to be a certain way. I am a certain kind of not normal, in a very well defined way that turns out to be not that rare. There is a pattern behind my apparent weirdness that makes me actually not weird at all; indeed, I am just like many other people who fall in the same pattern of non-normality. I'll come back to that in a moment. For now, the question is: I am a neuroscientist, for heaven's sake. I'm supposed to know a lot of things. I taught classes on anxiety, attention deficit, autism. So how could I not tell much sooner that I was myself on the autism spectrum?

Because, viewed from the inside, the most parsimonious hypothesis is that… everybody functions just like you - so if there is a problem, it is because you are still normal like everybody else except for the fact that YOU have a problem, and you have A problem - not a whole constellation of them.

I do mean “normal” and NOT “normal”, and I use these terms very literally (surprise, surprise!). “Normal” is a quality that is shared by 95% of a population: height within a certain range, a certain number of teeth, a certain level of sensitivity to sounds and images, a certain level of performance at a certain type of task. Everybody person is “normal” in a majority of ways, which makes them recognizable as a member of their species, and yet every person has their way of being not normal on some of those scales that we come up with to measure people. What makes somebody autistic is a very recognizable constellation of ways in which we are not normal. There is a constant heightened anxiety that comes with mutism (especially in emotionally charged situations), a love for patterns, routine, sameness and repetition, a tendency to take everything literally, difficulty inferring others’ intentionality (and with it, a lack of appreciation for sarcasm), difficulty in reading one's own and other's emotions, all of which culminate in difficulty in functioning socially. Besides all that, there are altered sensory abilities that make different autistic people either insensitive or too sensitive to different sensory modalities (one of which is interoception, the ability to read those internal physiological states that are the basis of experiencing emotions), which combine with altered attention (whether “too much” or “too little”) to push autistics towards the extremes of either constant sensory engagement or aloofness - or, most likely, a combination of both, one in each sensory modality. Add to that the ease in finding patterns and sticking to them and a strong motivation to do so, and you have social self-outcasts with special interests who love to hang out with other people like them, but who have to put a lot of effort into functioning in the world of normal people.

I had noticed a few "coincidences" here and there between myself and people on the autism spectrum, especially as I interacted with people already diagnosed as autistic. A friend's son is on the spectrum, and her description of his Aspie features sounded spot on - the patterns, the love of math and word play, the keen sense of (in)justice, the literality, the difficulty in telling sarcasm and getting some jokes. Then there was an Aspie love interest of Sherlock Holmes on the TV series Elementary: a woman who grew very agitated and frustrated when he insisted that she please look outside and tell him that the sky is red ("it's obviously not, why would I tell you that?"). That was exactly how many an argument at home had gone south: I could just not say something that would have ended the argument, but that was not true to me. Then a young cousin got diagnosed, and I found myself explaining to his mom why his quirks made perfect sense to me ("of course he's separating the balls in his play pool by color, that's SO much more interesting than wading in it").

But it took stepping outside of myself to take the perspective of a reader of Neurotribes to realize that I had lived through all that, and still did. From there, my therapist took over, and I started passing my life in review. I was not weird, after all. I was autistic - and very consistently so, indeed. And if I fit a pattern, then I was the very opposite of weird!

As to my then-husband… for a little while, it seemed that we were getting better every day at functioning with our differences - he, the king of subtlety, sociality and reading the room, and me aloof in my oyster, happy to be a spectator, learning by observation. But a lot of that was me still trying to make do with what I had, which was a difficult life in many ways. Finding oneself on the Autism spectrum is liberating in many ways, and the first thing it freed me from was trying to remain in a marriage that had run its course.