Autism, of the kind you don’t notice

Pablo seems to be as curious as I am. And it feels just a little weird to say it like this because I don’t really think curiosity can be measured and compared. What I do believe is that there are people who care about their curiosity, and others who simply ignore it, and leave it lying there, like an old bicycle in the backyard that only comes to mind when we trip on it, never the ones to get rid of it for good. Pablo and I have known each other for a while now, and I like giving some thought to how he sees me, because I always startle at the image he seems to have of me. After all, friendships forge us by reinforcing the way we want our friends, who know us down to the ferrous core, to see us.

At some point I told Pablo that a few years ago a psychiatrist diagnosed me with Asperger’s Syndrome, no longer a recognised diagnosis but at the time it was the coolest kind of autism you could get. Many, many times I had to endure that moment of “I have to tell you something” after my diagnosis, and it usually goes the same way. Well, almost always. Most of the time people react by pointing out something like “oh, but it’s so hard to tell.” I don’t ever doubt their intentions, and I never assume ill will, but I can’t help but sense the remark comes from the preoccupation of others ever learning that my brain lacked a little cooking.

When such a diagnosis falls on your lap, you inevitably end up burying yourself in Google results. First because of your immense curiosity and then because of the autism itself. As links sprout here and there you end up reading all sorts of articles with lists of Asperger’s celebrities — ranging from Einstein, Turing, Bill Gates to Michael Jackson and Bill Murray — most if not all with dubious diagnoses, of course, product of wild speculation and bad journalism. Largely because, among other things, diagnosing dead people or based on conjecture is quite negligent. Later comes the part of reading a bunch first-hand stories because, unlike the “other” kinds of autism (high functioning and severe, both controversial), aspies (as the self-proclamation goes) are very fond of assembling communities and carrying the diagnosis as a lapel pin.

As an eternal outcast (always too much of that and too little of this to ever belong to some discrete set of people), finding these first-person accounts made me feel infinitely less alone. All these people around the world who had lived so many situations similar to those I experienced during my childhood and adolescence, suddenly gave everything a new meaning. Suddenly every biographical milestone, no matter how small, was inscribed in a common epic. But the effect evaporated in a whim: even in that select group of autistic persons of the kind you don’t notice I could feel out of place, and let’s toast to that. I quickly had to realise that what made me who I am is not a diagnosis and that — despite the temptation to define myself from it — people are a more complex mess. And that’s fine.

The strange place you end up in when your diagnosis is not noticed is that we unexpectedly have to go out of our way to justify our most pedestrian difficulties. When I mention my diagnosis (something I try not to bring up more than a handful of times a year and in very calculated contexts) I get questioned right on the spot. The problem with autism is that it adheres to your own private definition of who you are, your identity, and it’s pretty hard to get rid of it. Maybe that’s why so many people define themselves as autistic above any other thing. In my case, it is only when my difficulties far outweigh my ability to overcome them that I fall into the temptation of defining myself almost exclusively as autistic — most frequently in the form of “fucking autistic.” Because, let’s be honest, several of the little things that come with the autistic starter pack are pretty shitty.

And that’s why it can be so utterly annoying when autism is not noticed. In my case, I feel compelled to insist that if someone had met me before 2012 they would have another opinion of me. I honestly don’t even know if that’s entirely true anymore. Of course, I am forced to trust the accounts of the people who have known me my whole life. I like to believe that I have really improved, and I like to believe that it’s something somehow measurable. Many things are definitely much easier for me now than four years ago. But I can only trust the people who know me (and ideally also love me) to inquire into that contrast, and celebrate it.

It was four years ago (well, 4 years and 15 days ago) that my diagnosis became an explanatory source of a myriad of my oddities. Oddities that went well beyond the catalog of known rarities of my mother, a school teacher with several decades of experience behind her who had seemingly never encountered a case like that of her son, the short one with huge glasses. And since the day I got my diagnosis I wasted not a single minute trying to understanding how autism works, or at least my very own flavour of autism, in order to find out if I could get to changing my own inner workings. And I take a bit of pride in believing that if they insist so much on claiming they don’t notice something I’ve been working my socks off, I must have done something well.

The thing is all hell breaks loose when my autism becomes noticeable. It often happens when my stress levels reach a point where no matter how many of my crafty cognitive tricks I try my brain gets the upper hand. Cognitive tricks that I learned from Candelaria, my cognitive-behavioral Yoda, who showed me the path of the Force and showed me that the brain is such a beautiful and wondrous thing and that much can be learned to hack it and make it work a little better. She also taught me how to recognise what the fuck an emotion is (do they come in different flavours?) and the importance of being able to recognise and communicate them.

For almost as long as I’ve been diagnosed I found that as my stress levels (or my nervousness, if you will) increase, my ability to make my autism less noticeable decreases. It’s pretty straightforward, actually. The first thing I lose is my ability to look into other people’s eyes, something I’ve come to achieve quite naturally now. Then I slowly start to lose the ability to recognise sarcasm, and everything becomes more and more literal as I become more and more frustrated, because it’s quite impossible to hide. And it’s not just second meanings, I suddenly have a hard time understanding what others are saying to me. If I wasn’t so nervous I would probably laugh at the confusions I generate, but as my stress levels increase my intolerance to sensory stimuli increases as well. Touch begins to become a violent and aching experience, smells prevent me from thinking and sounds generate a flight reflex that becomes unbearable. It all becomes too much. And stress seems to have no limit until it gets the best of me. If I can’t get out of the downward spiral I begin to feel the storm looming in the form of a nervous breakdown.

Perhaps the most awful aspect of a nervous breakdown is the oncoming feeling of a subtle growing distance from my body. It starts as a kind of vertigo. The first hint of being unable to escape a breakdown is the reflex of my muscles contracting. As my hands become rigid, my whole body seeks to arch. Something I, and anyone near this pathetic show, noticed is that I look for the ground. This is not a figure of speech: I had almost no nervous breakdowns in which I didn’t end up collapsed on the ground as if a black hole had landed on my navel and was attracting each of my limbs to the point of disappearance at one infinitely small point. Last year, which I often tout as one of the worst years of my life, I got to have one nervous breakdown per week for almost two months. Let’s talk about autism, yeah.

Some things I was never able to figure out, and I don’t have any hope of ever figuring them out. One of them is what we can call sensory hypersensitivity or “my senses are always up to 11 and sometimes I am so bothered by smells, sounds, colours and touch that I can’t even function.” I could never fully understand how it works, but there are days that are worse than others. There are days when any smell takes over my mind and doesn’t allow me to focus on anything else; I can’t get my head out of it (although this happens to me much less now than it did four years ago). The same thing happens to me with touch, and there are days when the feeling of touch on my skin feels like burning, as if all my nerves were concentrated on that point and it becomes impossible for me to think of anything else. Several years ago a person I worked with took my arm to talk to me and I missed what she was telling me because I just couldn’t hear it. I don’t think she ever found out. Just a few weeks ago on the subway I almost started crying only because of the intense smells that normally would not bother me but, I can only infer, that was surely a bad day for my senses. When it comes to sounds, I’m the closest thing I know to Turing (my cat, not the cat that as a mathematician pioneered computer science): loud sounds make me feel electricity all over my body. I become electrified, sometimes for a long while, after a motorcycle accelerates next to me.

The thing is, this all becomes noticeable only when I can’t take it anymore. But if Candelaria — who one day told me she was going to live in Sierra Leone and I felt like I was being forced to leave the nest — did anything right with me, it was preparing me for the many storms I would have to face. This year I only had one tiny crisis (I didn’t even get to the ground, yay) and overall I handle myself pretty well. That’s why my autism is not noticeable: because I work my ass off to accomplish that.

Maybe that’s a good thing: I think it was much more noticeable before.

Sometimes it even feels as if all this autism thing was nothing but a memory (“Oh, yeah, I forgot to say. I have what used to be known as Asperger’s Syndrome but now it’s simply autism. It’s a long story.”), until my cognitive tricks fail to cope with my nerves. And somehow it even opens up nice conversations with friends like Pablo, to whom I sometimes want to tell them my whole story but I don’t know how to approach the conversation and I end up writing several hundred words instead.

Sometimes, too, I think I’d like it to be noticed a little bit more. Perhaps that would make it easier to explain why I get so nervous on the subway, or why there are days when I can’t go through the shopping mall I take as a shortcut because the smells, and the sounds, and the lights are too intense for me. Or why I’m so afraid of making new friends, when I don’t know how to put down in words that I would love to make being my friend the simplest thing on this side of the Universe. Or that being able to have conversations with other people is sometimes the best thing that happens to me in a whole week.

In my eagerness to understand the way things work, I still haven’t come across the key to understanding the way people work. But avoiding solipsism at all costs, I ventured into at least trying to understand the way the person writing these words works, and although there is a lifetime of work ahead, I think I got pretty far.

Because I am also quite adventurous, even if it is not always noticed.