Recently, the brilliant Neurodivergent K published a blog post about hate, and about how autism “awareness” that abounds this time of year is just a cloak for bigotry. It’s a solid piece of writing that pulls no punches, and make no mistake, I agree with them – there is a solid chunk of the allistic populace that hates us. Yes, yes, #notallNTs, but enough. They may not hate all autistic people, but they hate us – the mouthy ones, the “high functioning,” the ones who preach acceptance and break it to parents that we will not call them allies or give them good-parent cookies solely because they bought some blue light bulbs and give money to a charity that actively calls for our neurotype’s eradication.
I was going to try and be really highfalutin’ with this post. I was going to ask my roommate the English major about Lacanian theory and semiotics, and explain that. Then I’d make some allusion to the fact that we all perceive words differently, and it can sometimes mess up discourse on a fundamental level. Then I would tie it back to the fact that the word ‘disability’ is routinely interpreted as something hugely dire by the non-disabled, and explain that ‘disability’ is in fact a social construct. Then, to close, I’d make some quasi-profound point about how we could all do a bit better at understanding that we all have different perceptions.
But today is the Disability Day of Mourning, and I’m not going to do that.
This morning, I read a Think Progress post about two parents in Iowa defending their hellspawn from accusations of bullying an autistic kid, saying Levi Null “brought it on himself.” I say hellspawn because sorry, you’re a special kind of hellspawn if you think bullying’s fun, okay or acceptable at any time. Period. Bullying implies picking on the weak – fighting implies equal strength.
Think Progress, who usually is a lot better about their sources than this, cited Autism $peaks to comment on Null’s “involuntary movements and difficulties socializing”. Now, for once, that’s true – Autism $peaks has said something accurate about an autistic person. According to the article, Null has Asperger’s and ADHD – technically an incorrect term, given that “Asperger’s syndrome” is no longer in the DSM-V (which is a post all its own, let me tell you), and autistics, or “Aspies” as we used to be called, do often have involuntary movements, and we definitely have difficulties socializing (I can speak for that last part personally).
However. In one of the comment threads, an autistic person commented that Autism $peaks was a bad choice to cite, because it does not speak for a lot of autistic people, and that a lot of the time, autism is only a disability because neurotypicals make it so – that is, that since NTs are the majority, any minority way of thinking is seen as “inferior” or “disabled” by many – not all. There were agreements, and then came the neurotypical avalanche.
One commenter told the autistic “Do you have an autistic child? If not then stfu.”
Another commenter told the autistic that ” Being different is one thing but suffering from severe mental or physical handicaps doesn’t change no matter how pretty you talk about it.”
The ignorance upsets me so much. It really does. Because here is an autistic person just trying to chime into a discussion on something that in theory, all civilized people can agree on – that bullying is wrong, that bullying someone who is allegedly disabled is worse – and they get shouted down. Ignored. Verbally abused.
We are the be-all, end-all of autism knowledge, because we are autistic and you are not.
I can’t repeat it enough. We are the be-all, end-all of autism knowledge, because we are autistic and you are not.
I’m not suggesting that parents or caregivers or neurotypical allies have nothing to offer. But I am suggesting that in a debate about autism, how about we listen to the people who have it before we parrot our own views? How about we let people who have the most intimate experience of something tell you how it really is, and how best to accept and understand it, instead of pathologizing it?
That leads to a greater point – something I’ve used with my Jewish friends, something I’ve begun to use with my fat friends, my friends of color, anyone who could be said to be part of a minority group. My excellent roommate (ER) put it like this when we were talking about queer people* – an ally is someone who speaks up for you when you are not in the room.
When she is not there and people are making jokes about non-straight sexualities, I as an ally can speak up against homophobia, biphobia, trans*phobia, et cetera. Not because I want a cookie, but because it’s the right thing to do. But when someone who is actually queer is in the room, able to speak for themselves, I shut up. Because I’m not queer, and because my experience will never exactly mirror that of someone who is.
When ER hears people making jokes or saying negative things about people on the autism spectrum, or Jewish people, she can and does speak up and say that it isn’t acceptable. But when I’m in the room, she lets me handle it, because she is neither autistic nor Jewish. And she knows that I am. So I should have the last word.
It’s a lesson I’ve tried to take to heart. I do my best not to “whitesplain” things to people of color**. I do my best not to “able-splain” things to people who are not able-bodied. I can be a good ally to a person of color, but as soon as they’re in the proverbial room, it’s my turn to sit down and shut up.
In the case of the Think Progress article, though, I am part of the group being denigrated. So if you’ll excuse me, I will not sit down, and I will not shut up. It’s not my turn.
* A term she uses for herself, therefore in this context I feel it appropriate to use.
** Though sometimes I don’t realize when I’m “whitesplaining”, because hi, I has an autistic, I no has good context clues. That’s another post entirely.
Dear Autism Parent,
You so often make a point that you’re “just worrying about your child’s future” when you come down on the side of negativity. My child is nonverbal, you say. Autism Speaks is just forecasting what their future probably will be like. I have special worries.
Every good parent worries about their child’s future, but it’s important to realize what that future could be. Whether their child is neurotypical or not – that’s simply being a good parent. And when you make it about you, when you think about your worries, you are casting blame on your child for being autistic. That isn’t being a good parent at all. Sorry.
While autism can be really hard to deal with both for the autistic person and for their family, it doesn’t mean that they’re sentenced to never progress – only that they probably won’t succeed to the highest levels in a neurotypical sphere. We have to make our own, and we need help and acceptance to do it, not pity. Does that make sense?
For better or worse, your child is autistic – and many parents (I don’t know if you are among them or not) try to separate their child from the autism. As if it’s just hiding a perfect normal kid underneath. Of course it’s true that autistic people don’t communicate the same way that allistic or neurotypical people do. But the thing is … so what? What are you (general you) going to do? The choices are to keep trying to expect a child to magically become able to speak or communicate and/or think like a neurotypical, or to accept that they are different and try to find a different way of communicating. Young kids can’t understand that reality, but parents can. Adult autistics can. People who know better can accept an autistic person’s way of communicating – AAC, sign language, typing, whatever. I know a woman who recently posted a photo of a letterboard tattoo* she got so her son could communicate with her no matter where they are. All behavior is communication – if your child is nonverbal but might grunt at you from time to time, or bang his head, that’s communication. It just (obviously) might take more help to decode. But it’s autistic behavior, not neurotypical behavior, because your child is not neurotypical. There is no point in feeling frustrated because your child can’t talk – I’m pretty darn sure they can communicate another way, and you can find it, with the right help and hope.
I accept that you might want to cure your son or daughter, and really, that’s your prerogative. But right now, in real life, you have an autistic child, and I am autistic, and a cure isn’t going to happen anytime soon. I accept that you might want to cure your child because being autistic in this society is hard, and you might think it’s easier to “cure” them than to make society show us respect – but I think the reverse is more true. I really do. It’s of course totally understandable that parents want the best for their children – but when “the best” is to be “normal”, we have to accept that that isn’t going to happen. We have to toss that paradigm out the window and do the best we can with the one we have. There is no cure right now, and I don’t believe there will be one in my lifetime. The avenues they are pursuing right now are not helpful, they are harmful – ABA “normalizing” therapy. Chelation. “Quiet hands.” All of these are designed to shove square pegs into round holes. Why not make round holes instead?
Suzanne Wright, meanwhile, is blind to that possibility that we are in a different paradigm – she doesn’t even understand that there’s a whole different playing field for autistics. She measures us by NT standards, finds us failing, and immediately jumps to the conclusion that we are useless, or tragic. Good for nothing but pain. She has no idea that there even is another playing field that’s just as good and well kept.
You can either dwell on the negativity of having a cure that may never come, or you can accept that this is your child. I know personally what I would rather do.
I still get the impression, rightly or wrongly, that you still wish your child was ‘normal’. Of course, I can’t tell you what to think or feel. But what I can tell you is that there’s no separating the autism from the child. And just because they’re autistic or I am or Amy Sequenzia or Carly Fleischmann or any of the other non-speaking activists I’ve come across does not mean they’ll never going to amount to anything. Only that they may not measure up in neurotypical eyes. And you can take that fact and let it eat you, or you can help them be the very best autistic person they can be.
Sometimes I get confused and mixed up about my own place in the autistic movement, I have to say. I don’t want us to ever be “separate but equal”; we are not X-Men, we are not freaks. But we also have an identity as autistics that deserves respect – most of all, especially from, people like parents. Your child may succeed without the power of neurotypical speech, but they’re a lot less likely to succeed in life without love or even respect from the parents who are supposed to love them.
I am greater than Suzanne Wright believes I can be. And I assure you, so is your child. Accept them for who they are, and believe it.
* Image from the Autism Women’s Network Facebook group; will be removed if the poster asks.
Parts of this letter were written as a response to a blog post which was posted by a mother of an autistic child in which she stated that Suzanne Wright (cofounder of Autism Speaks)’s vicious article of Nov. 11* “didn’t offend her”. I replied, but I wanted this to find a wider audience. There are still some “autism parents” and other neurotypicals who do not comprehend why Autism Speaks is so offensive to many spectrumites; I can only hope that the more we write, the more people will understand. -cc
Dear Autism Parent,
I am going to try to respond in a civil way, even though I find your opinions very hurtful.
The reason why I respond with such anger when people agree with Suzanne Wright, and why people like Shannon des Roches Rosa represent how most of us (adult autistics) really feel about this is because at its core, A$ is dehumanizing all of us. Me, your child, the most verbal and non verbal extremes, anyone and everyone. And some parents are outraged, as I think they should be. The way Autism $peaks talks about autistic people (children and adults) is the way that someone talks about a plant – no, a couch. They don’t speak to autistics or about autistics like they’re human. And don’t we all deserve to be treated like humans? Every one of us?
When Suzanne Wright uses phrases like “lost”, “missing” and the like, it is negating everything any autistic has ever done in terms of making strides to fit into “normal” society (which may or may not be a good goal anyway). If your child learned to use a letterboard? Big deal, he’s not holding a “normal” conversation. I got over my telephone phobia? Big deal, if I don’t learn to love it like “normal” people do. Everything is predicated on her and A$’ idea of “normalcy”. And the rules of the game are accordingly rigged.
I can drive, type and usually hold a coherent conversation? [sarcasm] I clearly must not be “autistic enough” to understand [/sarcasm] – never mind that there are days I go completely nonverbal, that there are times when my routine being thrown off by something as small as putting the cat-box in a new place reduces me to a huge meltdown. By contrast, someone like the child of another blogger I follow – nonverbal, requiring 1:1 support, well. [sarcasm] Clearly they’re “too autistic” to ever have an opinion or to communicate in a valid way [/sarcasm] (speaking is not the only way to communicate!). By the logic of people like Suzanne Wright, autistics will never have a say in their own destiny, regardless of what end of the spectrum they are on. I certainly can’t speak for you, obviously, but I can’t play that game. Wright’s rules are rigged against me and those like me from the start, like I said. So why play?
This is why it’s so hurtful to see parents who allegedly love their children (I say allegedly only because I do not know you personally) fall victim to this woman. By choosing to buy into what this woman is saying, parents are saying that they wish they had a different child; that they are suffering because their child is autistic and not normal. That they want the “autism” gone, that they want the “perfect child” underneath. There IS no perfect child underneath. Some parents I’ve read about can’t even say the word “autism” – they say IT or ‘his disability’ or something else equally vague and irritating. It’s not like Beetlejuice – saying “autism” three times won’t make your life explode or your marriage destruct.
I’m not a parent, and I know you may very well tell me to go away, that I’m not “really” autistic, that I’m “not like your child” so I can’t possibly understand what you go through. You’re right; I don’t. Because I was diagnosed later in life, but I also have a mother who shrugged and said “I’m glad you know now” when I told her I was autistic. I have a mother who understands that I need help with some things, but doesn’t blame me for the source of her money troubles or any of the issues my mother may have. When my mother was sad, I knew it, even as a six or seven year old kid. Do you want your child to know you’re sad because of them? Because even if they can’t tell you “Mommy, I wish you were happy”? They know.
Imagine being told that you are a burden and you make your parents’ lives harder.
Imagine that, if nothing else.
Even if you ignore everything I’ve said so far, even if you persist in being blind, wake up to one thing: supporting Autism Speaks is supporting someone who hates us. And no, that isn’t hyperbole. Suzanne Wright sees your child as a tragedy. Autistic adults and allied activists prefer to see your child as someone who can rise above the box that society – and perhaps, their parents -have put them in. What do you prefer?
http://wearelikeyourchild.blogspot.com/ – A collection of autistic writers detailing how yes, we are all like your child.
http://www.autreat.com/dont_mourn.html – “Don’t Mourn for Us”, by Jim Sinclair, an autistic activist who works with parents.
http://nonspeakingautisticspeaking.blogspot.com/ – The writings of Amy Sequenzia, a “profoundly disabled” (by your measure) autistic activist who is nonverbal and epileptic.
* I steadfastly refuse to link to Autism $peaks. Google it; it’ll be up there.