Suzana Herculano-Houzel

Why did it take me so long to realize I was autistic? Because I am autistic, duh

NOC013_Por que demorei tanto tempo pra perceber que sou autist

…and it’s all the more telling that it took me FOUR YEARS after my diagnosis to realize that the reason why I didn’t realize sooner that I was autistic was exactly because I was autistic. Let me explain.

Autism is characterized by sensory hyper- OR hyposensitivities. Most commonly, the hypersensitivities are visual/auditory/haptic (fancy for “touch-related”) in nature, and the hyposensitivities are related to physiological sensations pertaining to the body, or “interoception”. It so happens that these physiological sensations are the basis for feeling emotions, and what’s more, for identifying the emotions expressed in the body.

How does this present? In my case: I don’t know when to stop because I am getting tired, for I don’t “get tired”: I soldier on until I am about to fall apart from exhaustion. THAT is when I notice that it’s time I should stop whatever it is that I am doing. It’s great for getting things done – but makes my weeks a seesaw of overworking myself one day and needing time out to recover the next.

At this point in my life, into my 50s, I know in “just” a few minutes that something is bothering me – but it still takes me hours, if not days, to run through all the current scenarios in my mind and realize what exactly is bothering me. Sometimes that something that bothers me is pain. I don’t notice that I am in pain until it happens to go away suddenly, maybe because I’ve stood up after hours at the computer and walked down the hallway and so finally, finally started breathing right.

(By the way, I am convinced that my daughter’s autism presents in the opposite way in this regard: she is exquisitely sensitive to pain, so you can imagine how suffering from endometriosis, a chronic inflammatory condition, is a particular ordeal for her.)

So it makes perfect sense that autism is a condition best detected by OTHERS, and not the self – even when the self is a neuroscientist, and one who cares very much about the neuroscience of everyday life. All I knew was that I was “weird”, as in clearly not normal in the statistical sense. But it took reading Silberman’s Neurotribes to be forced to face the long-standing reality of my childhood and adolescence as an Aspie. It was a lightbulb moment that lasted for the rest of the reading, and keeps recurring as I think back on my life.

So, yeah, I finally realized just the other day that autism, pretty much by definition, blunts our chances of recognizing ourselves as autistic.

The corollary of that realization is that EVERYBODY wins if people, on BOTH sides, feel comfortable with asking, and being asked: Have you considered that maybe, just maybe, you are autistic?

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