I’ve had the, um, experience of interacting with some autism-hating parents today, and, given that they have no interest in hearing me out, I’m going to say here what I wish I could say to them. Selfishly, it’s for my own sanity, because I know that no one who truly hates autism will even take the time to read my words. Heaven forbid they see that life doesn’t have to be filled with hate, right?
I believe that autism is a part of me, much like my gender or my hair-color. If linguistic choices are a determining factor, then I am autistic and not a person with autism… that is to say that autism is not a purse that comes with me, and when it gets to be too heavy, I set it down. It is an inherent part of my being. I am not a “person with femaleness,” but I am a woman. I am an autistic person, as well. Once a caked is baked, the tiny grains of flour become integral to its structure and its very existence. Those little grains are like my autism. Even if you could complete the totally impossible task of removing the flour from the already-baked cake, you wouldn’t be left with a flour-less cake…. you’d have nothing. Without autism, you wouldn’t have me, either. My recipe of personhood requires that autism is a part. There are recipes for flourless cakes out there, much like there are “recipes” for autism-less people (we call them NTs!). But, you can’t just remove the flour from a cake that needs it to exist. There is no cake without the flour and no Lydia without her autism.
Some parents hate autism. They say it robs their kids of… many things. They say people treat their kids badly, their kids miss opportunities. Their kids are square pegs in round holes. The current rhetoric on autism touts the idea that we must, then, turn the square pegs into round ones. Shoving a square peg into round holes will only damage the peg, and deeply so. Ask me how I know (or read here). In the end, and the way I live my life now, is with a square-hole drill in hand. Now, they don’t sell those ready-made… you’ve got to build them for yourself. It’s damn here impossible to find a ready-made life for an autistic person; instead, you’ve got to parse and parcel this program, that job, this housing, those services, and, in the end, you’ll get a square hole. It won’t look like a round-holed, NT life. That’s the point!
I get that autism can be hard. Often, parents, hear or read my ability with words or my more-or-less ability to interact much of the time and think that I don’t “get” their “flavor” of autism. One parent said that I don’t know what eating-disordered, self-injurious, violent, screaming-at-brushing-the-teeth autism is like. I absolutely understand every one of those things. I understand relentlessly bullied, screaming at the parents, hurting myself, suicide attempts, psych admits, refuse to let Mom wash my hair (as a kid, that is), starving myself (both due to texture issues and, later, body image issues), Risperdal-taking (still do), screaming out of frustration at being unable to communicate my needs, accusations of creating my own medical issues because doctors don’t look at me and think “autism” but rather look at me and think “mentally unstable”… I GET IT. I choose not to say “I’ve come a long way” but rather that “I’m in a much different place,” because there is nothing, if anything keeping me from sliding right back there. Please know that my ability to use big words only says that I can use big words; it says nothing about my experiences with autism.
But here is what I know: My suffering with autism is not at the fault of the way God made my brain; it’s at the fault of living in a world that doesn’t get me. And, if I continue to shove myself into a typical-looking life, I will only damage the peg.
When parents blame autism for their pain–their kids’ pain–a couple of things happen. One is a lot of anger and bitterness at something they cannot change. I live with significant medical situations every day… I have a feeding tube, ostomy, insulin pump, and port, and I’ve been in a nursing home for the last year at age 26. I know pain and frustration and unfairness and losing a life I always thought I’d have. Here is something else I know… that fighting what is will bring ONLY more anger and bitterness with it. I can choose to scream and cry and vent vent vent, or I can choose to focus on the things that DO bring my joy, even in the midst of pain that even a Fentanyl patch isn’t handling effectively. When I try to help parents see that there is another way, it’s not because I will gain something from “winning them over.” It’s solely because I want them to live a more peaceful life. Another thing that happens when parents hate autism is that their kids come to hate autism, too. A kid isn’t born with an inherent knowledge of what autism is. We teach that to him. So, if we teach him that autism is why he’s bullied, he’ll want to change his autism. If we teach him that the lack of perspective and insight from other kids is why he’s bullied, then he’ll want to change the perspective and insight of other kids. Let’s grow our children in to people that want to make the world around them better rather than people who blame themselves for the ills of society that are not their fault!
I’ll say it again, even though it won’t reach anyone who needs to hear it… I have nothing to gain by changing the minds of parents who hate autism. I only want them to find happiness. It hurts me to be attacked when all I want is THEIR happiness–like I’m trying to spoon feed them cod liver oil. I have a message of positivity that promises a life of greater peace… and yet, I’m yelled at for disrespecting, shaming, and threatening people by wanting to spread it? It is beyond me. It’s beyond me why anyone who needs to hear what I have to say won’t get this far in the post to hear it. It’s as if people are cloaked in an immunity to positivity, and that, I do not understand.