Saturday, November 1, 2014

To Whom Am I Speaking?

Catsidhe writes To Whom Am I Speaking? on LiveJournal

Autistics Speaking Day, 2014.

When I write about Autism, who am I writing to?

[My Special Interest is linguistics, so already I have gotten distracted over how that sentence should, in theory, be "to whom am I writing", because dative. But the dative is dropped when the preposition is split in English, because it's fossilised, and no longer productive. And there's nothing wrong with that, that's just how English works. And then I got distracted for a moment about the "because noun" construction, and how useful it is at summarising an entire field of study into one word, and how it expresses the idea of "there are lots of reasons for this, but this margin is too narrow for them, and they are left as an exercise for the reader", and then I thought that what that construction really does is act as shorthand for "there are reasons, and if I start enumerating them, I won't have any time for anything else." And then I thought that this aside could probably have been expressed as "I got distracted by the first sentence, because linguistics."]

Anyway, am I talking to other Autism Advocates? Because if I am, I'm talking to people who already know what I'm about to say. As soon as I mentioned a Special Interest in the above aside, they knew that I had to fight my way back to the point from it. So I don't think I'm talking to them, because I have nothing to say which they haven't experienced.

Am I talking to Parents of Autists? That's hard. I hope I am, and I hope they're listening. I've see parents, however, who don't care what I have to say on the matter. Parents in Autism Speaks, or Age of Autism, who are the only people who could possibly ever speak for their children, because any autistic person who is articulate enough to propound an opinion is by definition not autistic enough to represent their child, and anyone who is as thoroughly afflicted is, by definition, unable to articulate an opinion. Don't we hear the continual grief at never hearing the words "I love you"? I mean, I could get angry that they wilfully ignore the people who try to tell them the behaviours which mean "I love you", but they're too busy looking for the correct form that they reject the message. i could get angry at that, but I'm usually too angry that they tend also to support anti-vaccination and chelation and systematic psychological torment in the name of "treatment". The Judge Rotenberg Center for the Torture of Autists still exists, and its operators have not been sent to the Hague in chains. Parents of Autists who don't listen to Autists don't anger me for that alone. And the Parents of Autists who do listen to us have my respect. It can't be easy learning that your child is autistic, and seeking out a whole other culture and seeking to learn from them is amazingly hard: trust us when we say that we understand this, because we do that every time we walk out the door in the morning. So I'm not talking to the "you're too functional to be autistic" parents, because they're already shouting me down, and I'm not talking to the parents who seek out Autists and ask them what to do, because I don't need to talk to them: they're already listening.

Am I talking to Allists? Neurotypicals? People Without Autism? Because it seems sometimes that I could wear a sign and walk the streets of the city, screaming in people's faces, and they still wouldn't give a shit about what I say. The media generally seems to have four stories about Autism: 1) Doctors have found a (cause|potential cure) for Autism. (Spoiler: no, they haven't.) 2) Parent of an Autistic child is lauded for their bravery and hard work and success with a revolutionary new treatment for autism. (Which isn't to say that they haven't put in a lot of work, and come across something which works for them and maybe others, and it's not a bed of roses... but we never hear from the child.) 3) Tragic death/injury/assault/humiliation of an Autist, not only but far too often at the hands of their own parents. (And almost every. Single. Time. the Autism is used as a mitigating factor: that the child was autistic is used to make the crime not as bad, that it's understandable for the parent to have done this, and if you don't believe me, look up the Issy Stapleton case.) 4) Temple Grandin or John Elder Robison. I don't hear the voices on TV or the Radio of any Autists outside fiction who aren't these two. Not to begrudge them a voice, but if the number of Autists out there really is one in eighty-eight, you'd thing the news and lifestyle shows could at least pretend to find one of us to ask when there's news about us. But my experience so far is that Autism is a fascinating subject, but actual Autists aren't worth considering. Sometimes I feel like the woman in labour in Monty Python's Meaning of Life: "What do I do?" "Nothing, dear, you're not qualified!"

Am I speaking to my co-workers? Some of them are really cool about it all: they couldn't care if I can make a phone call, so long as the work gets done. Some co-workers, on the other hand, keep asking me to do things like they're nothing hard at all, like go to meetings, and phone strangers on a daily basis, and remember something they just told me but which hasn't been written down, and I keep having to say "I'm autistic, remember?" I shouldn't have to keep saying it. I shouldn't have to keep defending my failures with that. And what I hate most about it is that I have promised myself that my autism will only ever be an explanation, not an excuse. But whenever I'm forced to remind the same person, again, that I'm autistic, it feels more and more like an excuse. Him forgetting that I might have difficulties raises the same demons I battled inside my own head for decades, the same feelings of inadequacy and uselessness, and that there was no excuse, except that I was a lazy failure. Autism gave me a reason, and a weapon to beat those demons down: I'm allowed to not be good at those things. I'm supposed to not be good at them. I'm allowed to find them stressful and anxiety inducing and distressing and painful. I'm allowed to want to avoid them, and I should be allowed to whenever it's feasible. But when those difficulties are ignored, or treated like an annoying quirk, rather than something which can render me useless for days, then those demons sneak out and return to gnawing at my soul. But as I do have to keep reminding those co-workers, I don't think I'm talking to them, because they're not going to change their treatment of me anyway.

So, by the process of elimination, I think I've identified who I am talking to. ["To whom I am talking." Sorry. Reflex.]

You out there, who think you are Autistic, but aren't sure. Who are worried that everything you read about Autism sounds more and more like you're own life history, but have been convinced by Rain Man and Autism Speaks that you can't be Autistic. For everyone who is still trying to come to terms with your diagnosis, whether it was delivered this morning, or a decade ago. To children, teenagers, adults. To everyone who feels like they're the only person in the world dealing with this. I'm talking to you.

And what I'm saying is this: you aren't alone. You feel alone, but we all do. To an extent that comes with the condition. (I don't know whether that's a necessary part of being on the Spectrum, or a simple result of growing up isolated from anyone who really understands you.) But I beg you to read Autistics Speaking Day posts, all of them you can bear, and to realise that you are learning something from each one: not what it is like to be Autistic, but how each one is familiar. Each post will feel like an old memory; you may gain new insights, but they're insights into yourself. And the more you feel that twist in your stomach as you read someone else's words describing your own experience, as you're never seen it laid out before, the more you should know that you are one of us; that you have found your people. That you belong.

To you, I say: welcome. Hang around. You are under no obligation to say anything, but neither are you obliged to remain silent. Speak up as and when you are comfortable doing so. But I beg you to at least listen to your peers. Because it helps immeasurably just to know that they're there. And we understand.

1 comment:

  1. Hey, I am a parent. I have an autistic boy who doesn't talk yet and I am learning a lot from you, Cynthia Kim, Amy Sequenzia, and all the others. Thank you! And keep talking!


Open discussion is encouraged, but posts judged to be bullying or using inappropriate languages may be deleted. Please exercise good judgment when commenting. Comments will be moderated.