nb: this piece is also a few years old, was also previously published on the Thinking Persons Guide to Autism, and I see it as a companion to ‘You Don’t. If any parent of an autistic kid wants to know why I don’t want your kid to end up like me, this is why.
We are scarred, we adults on the spectrum.
We are scarred, both inside and out.
Our lives are twisted paths littered with diagnoses. We have fought for years to get to where we are now, and still it isn’t good enough.
Children lucky enough to be born in an age where autism is at least somewhat understood, they do not understand how badly we were treated. When there are actual anti-bullying laws on the books, it is hard to understand teachers and parents who told us not to tattle even as bruises bloomed on our bodies. When there are therapies, safe and effective, available, it is hard to understand a world that didn’t know what to do with us, or what we were, at all.
We are scarred.
We went to schools where there was no help. Sometimes we were shunted into special education rooms, or to the behavior-problems division. There we were taught that we were stupid, retarded, that we would never amount to anything. We were accused of cheating when we read so well but couldn’t write an essay, drew complex diagrams yet failed math. We were denied entry into higher-level classes because we didn’t appear to be smart or participating in class, and our minds thirsted for more knowledge in vain.
We went to therapies, all sorts of therapies. Look at this ink blot, what do you see? I see an ink blot. Hours and hours with workbooks and little faces – this is what sad looks like, can you look sad? No, you are wrong, that is not what sad looks like. It does not matter what sad looks like to you, it matters only what it looks like to others.
You are avoiding the subject, the therapists say, over and over, you only want to talk about dogs and not your real issues. Why do you have such a problem with authority? Why are you so rude on purpose? Why do you like making people mad? Your whole family is in a shambles and it is all your fault.
It was all our fault – our grades, our trips to the office, our parents divorce, our mother’s stress, our messy house. We didn’t know why, but it was all our fault, and the burden grew heavier as each year grew and we tried for independence and failed yet again.
We were drugged. Oh, we were drugged to the heavens. Every last tranquilizer that’s ever been known to man. Early SSRI’s, late SSRI’s. We gained weight, lost it, became hyperactive, slept all day, and still they kept changing them, trying to find the magic pill. They never understood why our bodies reacted so differently to medications than others bodies did. They didn’t understand that our autism, even if they did call it that, wasn’t just in our brains, it is in our whole bodies, and that people on the spectrum have the distinctive tendency to react in unique ways to everything.
We were teased, taunted, bullied, punished. Verbal abuse was routine. We learned that we were Other very young, and that Other was bad. We started thinking about suicide before we knew what the word was. We kept swimming as hard as we could, but it seemed like it would be so much easier to just give up and let ourselves drown. The waves were always over our heads, always crashing down on any small gains we made.
Autistics on a whole have long memories. Too long. We remember standing in the fifth-grade lunch line and feeling that the world was crashing down. We remember running through the middle-school hallways and trying to avoid getting kicked. Our post-traumatic stress disorder, so common as to be almost routine in adults, wasn’t caused by any specific incident. It was caused by life, life itself, the endless routine of falling down and getting up and trying again only to fail again.
We are used to ignoring our own bodies. ‘These carrots are too spicy’ we complained as a child, only to be told no, they were sweet, that the music wasn’t too loud, nobody can hear lights, what you are experiencing is invalid. We heard: you are invalid. You do not experience the world the same way as everyone else, and therefore, your experience is wrong. You learn to ignore the ever-present pain because nothing can be done about it, but then you have a kidney infection and others get mad at you for not noticing sooner. But why should you trust your body when it is always wrong?
We are scarred, and you who say we look so young, I remind you that we are old, and we are scarred, and we are delicate. We are prone to breakage. Anger, even the slightest bit of it, scares us because in the past, misinterpreting anger led to yelling and violence and punishments. We are prone to apologies for things we did not do, for whatever it was, in our past it was usually our fault.
They say that what doesn’t kill you, makes you stronger. If so, we are forged of steel and iron. We can deal with whatever life throws at us, we are used to managing on our own, but dammit, it is so hard sometimes. It is so hard trying and pretending and figuring things out all the time. It takes years of effort to understand, logically if not emotionally, that we are not stupid, we are not invalid, we have just as much a right to be accepted and loved as anyone else.
Yet even so, when we reach that point, even then we are still scarred.
You make an offhand remark, but it builds upon decades of insults and innuendos. You make a reference, and our minds go spinning backwards and we are re-living something that we wish we could forget. You say that we don’t seem autistic, and we want to weep, because maybe if we had learned to not be autistic sooner in our lives, we wouldn’t be so scarred.