“Why do they* hate us?” I asked a dear friend of mine, who happens to have an autistic daughter.
“Because they don’t know you,” she said, but I was dissatisfied with this answer.
I kept asking, kept thinking and pondering. Why do they hate us? Because their actions and words, over and over, show us that they do.
It is taken for granted that lesbians speak for lesbians, people of color speak for people of color, Christians speak for Christians. If you held a conference or an event centered on New England weather, you’d expect New Englanders to be running it, to be a large part of it, not just as an audience but an active participant. Yet somehow, in the autism community, we’ve got the Floridians claiming that they have just as much knowledge as us New Englanders, who have actually lived and continue to actually live in the very place they are so interested in learning about.
Or say a white mother adopts a very dark-skinned African American child. She knows her child, she knows them very well, but would a white mother have any right to say that a light-skinned African American adult cannot possibly relate to her child? Would a white mother claim to be an expert on racism? No, of course not. That’s ridiculous. Why, then, does this happen – again and again and again – in the autism community?
I simply do not get it.
Autistic adults, when it comes down to it, want one thing, and one thing only, from autism parents: We want to be validated and acknowledged as the autism experts. We want to be listened to, we want our opinions to hold more weight than the opinions of those who have never actually lived inside of an autistic body.
The other day on Facebook, a mother was lamenting about how her child is nothing like these ‘high-functioning’ (her words, not mine) adults, and she was tired of people saying she shouldn’t want a cure, when her son, who had so many problems, would want one and she wanted one, too. I didn’t want to get into the argument, but I couldn’t help posting a link both to We Are Like Your Child (http://wearelikeyourchild.blogspot.com/) and a recent essay by the wonderful Amy Sequenzia, (http://ollibean.com/2015/04/17/celebrating-my-life/?hc_location=ufi) (Sorry, still can’t figure out how to do links!)
The response from an autism mom was that Amy was nothing like her child, because non-speaking wasn’t the same as non-verbal.
My therapist, Thea, tells me, quite frankly, that autistics need to stop talking to parents who won’t change, because it will not do any good. She says that they lack the sophistication and imagination to see that we are like their children, and that their narcissism will cause us only harm. According to Thea, these parents have let their tragedy define them, and if they started to see disability as a natural event and not a tragedy, then they will have to stop seeing themselves as special and their problems as unique.
They can’t hate their kids, Thea says, but they are terrified and traumatized of difference and so they need to hate us instead. They need to Other us, as so many, many powerful groups of people have done to less-powerful groups of people over the years.
This makes sense. It does. I want to take a deep breath, walk away and never look back, yet somehow…….I cannot.
Because some of these parents, some of these parents who clearly Do Not Get It, are such very nice people. They are fun people. They are people I would like to hang out with, to have conversations with, to be in community with. And somehow I keep thinking that maybe if I just presented my view in the ‘right way’, they would get it. After all, some people have changed their views. People who used to light it up blue have stopped doing so. Why can’t they?
I’m pretty certain it has to do with neurological wiring, or adaptive evolution, or something to do with science terms I never learned. Because it is just plain confusing that people who actually understand why airplanes stay in the air or how to do long division with fractions without a calculator cannot get this:
Autistics do not want a cure, because autism is in every single cell of our bodies. You cannot cure us without extinguishing our personalities and complex inner worlds, without killing off if not our entire bodies then our entire minds, and we don’t want that. Seizures, gastro-intestinal problems, allergies, and self-harm are not a part of autism – they are things which go along with it, and which most of us would love help or a cure with.
Autism parents say that we don’t get it, what it is like, living in the battle zone day after day. They tell us how horrific their lives are, that we, who are (x, y, z) and can do (q, r, s,) cannot possibly have insights into their child that they themselves do not. And yes – from a cursory examination of pro-neurodiversity blogs, it may indeed seem like autism is all sunshine and roses, for the simple fact that we don’t want our meltdowns splashed all over the internet. We don’t want to talk about self-harm, about the ER trips or the numerous psych hospitalizations or cocking up yet another job. We don’t necessarily want to remember what it was like to be a child, unable to say what we needed or wanted and so being denied the most basic of things: food we would eat, clothes that didn’t hurt, pain relief, dignity. The dignity that some autism parents seem to have no problem denying their children today.
I’m not saying I’m an expert on your son. Only your son is an expert on himself. But do I know more about autism than you do? Yes. If you are straight, do I know more about being a lesbian than you do? Yes. You know why? Because I’m autistic! (and a lesbian, but that’s neither here nor there.)
We really are not asking for much, yet somehow, asking for such simple things turns out to be a huge deal. Respect and inclusion – is it really that difficult? The autistic community is welcome, waiting for you with open arms. We’re a very nice group, overall, with just as much diversity as you’d find anywhere. We tend to be blunt and have slightly morbid, sarcastic senses of humor. Many of us are deeply appreciative of both irony and physical comedy, and I’m pretty sure that someone around here can tell you when your train is, fix your computer, and / or write a 300-page paper on the societal structure of Druids in north-eastern Wales.
I don’t want to cause discord, I don’t want to cause fighting. I just want to ask one simple question of all autism parents, everywhere: why can you be the only expert? Why can’t you make room for us?
I welcome respectful, open-minded dialogue about this issue. I will not tolerate ableism or hatred of any sort, but I would love your thoughts on this.
*’They’ refers to autism parents, in particular, parents who claim autistics don’t ‘get it’ and cannot speak for their children.
*There are some pro-neurodiversity parents. Jess Wilson and Sharon de Roches Rosa are good place to start (links.) It’s just that they tend to be much more rare than the typical, my-kid-is-not-like-you parent you encounter here, there, and everywhere.