Dec
30, 2011

Memoirs on autism also frequently mention the parents’ distress at seeing the spark gradually go out of the eyes of their child as language skills regress and he or she retreats into a self-enclosed world—the dreaded prison of autos, the root meaning of autism.

We took my son on a pilgrimage to the Bronx for an evaluation three months after he had a frightening regression in March. He had been receiving early-intervention services for three months and was improving, and then the light in his eyes began to go out. He stopped looking in my eyes, and when I caught his chin in my hand to look in his face, there was nothing there. He was irritable and spun in circles most of the time, and when he did sit down, he kept pushing the same button on a musical toy over and over and couldn’t be engaged. He didn’t even like his beloved books anymore. My son was gone—there was no spark in his face, no sign of life, just dead eyes.

Little Boy Lost by Amy Leal

I’m a so-called “regressive autistic”. I lost language skills when I was a small child. I also experienced something rarer, in that I also lost a bunch of different skills including speech, gradually starting in early adolescence.

Thing is, I’m still here. I’m not dead even though people have described my eyes in that and even more offensive ways. I would still be here even if I lost the typed language that I still have. The essence of who I am does not depend on facial expression, on my ability to command my body and have it do my bidding, on whether I have access to using or understanding any language at all. In fact, during the time period when I began losing skills, something else was going on. I was getting more in touch with who I really am. The skills that I find the most important — skills most people can’t even fathom existing — have been honing themselves more and more over time. Some of this is not coincidence. Some of what is required to use those skills is the absence or lessening of others.

But even if the things most important to me were not becoming stronger. Even if who I am was not being distilled down to a more and more intense essence with every passing year. Even if I was not becoming happier, more ethical, more in touch with the world around me in ways most people can’t imagine. I would still be a person. I would still be myself. I would still have life, heart, love, and soul thoroughly intact. And it would still be really fucking offensive to refer to people like me as if we were dead, not really there, and losing ourselves, just because we move or communicate or think in ways different than we used to.

To quote a good friend of mine, also autistic: I’m the one who has to live with the stereotypes you are trying to build. I live or die depending on whether people think I’m actually still here or not. No really — live or die. Already survived one attempt of murder-through-neglect by people who were tasked with taking care of me. They thought the real me was gone too. They wanted me to not be in their mental institution because they would rather treat people who were going to get better. They said these things openly in my presence because I was not enough of a person for them to care. Across the world, autistic people die all the time. Often at the hands of caregivers and parents. When you make us sound less human, less alive, less ourselves, that has the same effect it has on any other group of people: Our lives matter less. People openly kill us because we are not the people they think we used to be, not their real children anymore. So when you say things like this it’s just one more piece that tips things in the direction of our unpersonhood.

And even when not life and death… some of the worst things anyone has said to me were things like “I want the old you back.” The me who was able to do more things. Because people want me to at least seem less disabled. And there’s this thing where who I am now is never good enough. They want the old me. Even if that’s the me who was truly lost and confused. Even if that was a horribly unhappy time in my life. Better to be unhappy and “higher functioning” than happy and “lower functioning”. It tears my heart to pieces when people want the “old me”, no matter how innocent they think it is. (It also suggests they value form over function: Someone who can speak but barely communicate is apparently better than someone who can communicate but barely speak.)

This is all so close to home that it terrifies me. In a world where people like me are already dehumanized. Which leads directly to abuse and murder even when the dehumanization is unintended as such. We can’t afford for people to be spreading this idea that when we “regress”, we lose who we are and all signs of life. And seriously… have you ever had anyone tell you your eyes are empty and dead, your face shows nothing there, you are clearly missing out on what life has to offer, you have the cognitive functioning of an infant, there’s no person inside you, you’re just an empty shell? Because I have, to my face, and it’s more horrifying than any loss of skills could ever be.

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