Stop Saying That!

*side note: I wrote this quite recently in a moment of significant frustration. Instead of cleaning it up and removing all the feels from it, I’ve decided to leave it as is. Rough, disjoint, and full of frustration. I’m kind of not sure about this, as I seem to have some idea that I’m not supposed to actually show my feels (talk about them, sure. show them, not so much) but I’m trying it anyway.

Seriously, quit saying that I am the one who lacks empathy. Because I am TIRED of this.

Jess, of Diary of a Mom, is one of the few mom bloggers I read. I appreciate the fact that she makes an effort to bridge that gap between autistic adults and parents of autistic children. But, as shown in this post even she finds it to be somewhat remarkable to actually listen to an adult on the autism spectrum for insight into what it’s like to BE on the spectrum.

Even she admits that it had not occurred to her to look at things from her autistic daughter’s perspective. In the end, she is another parent who does a whole lot of talking to other parents, and not a lot of talking to us. I’m glad that she talks to us at all, don’t get me wrong. And she does try, she works on promoting the whole idea of talking to adults on the autism spectrum because, you know, we’re there and that’s a good thing. But still, when I’m read her blog I still find that I am Other. I am Them. She is talking to other parents, not to autistic adults. And then, if I stop to think about it, I realize that she is Them-ing a group of which her daughter is a part. The daughter on the autism spectrum, who she is working so hard to help, and create a world where her daughter can be who she is, but still I’m Them. I barely even know how to process this, but it just seems so messed up. And this is coming from a parent who WANTS autistic adults to be listened to, and not all parents want that.

And the comments… parents who had never even considered looking at things from their child’s perspective. Not even that they hadn’t bothered to do so yet, but it had not even occurred to them that it is a thing to do. And I am SO FRUSTRATED at that.

I regularly see parents claiming that they are their child’s voice, often when their child has significant communication difficulties. And you know what? You ARE your child’s voice. You are their primary advocate until your child can speak for themselves. How can you possibly claim to be able to do that if you never bother to stop and really try to see from your child’s perspective? If you want to understand someone, you have to look at their world from their point of view. You have to at least TRY.

You want to talk about people not understanding that other people are different than them? Look at yourselves before you go looking at me. Look at the people who don’t understand that when I say I don’t want to touch strangers, I actually mean I don’t want to touch strangers. Look at the people who insist that I am a puzzle without bothering to think about the impact that metaphor has on me and those like me. Look at the people who blame autistic people for our difficulty in understanding others, and then continue to blame autistic people for others difficulty in understanding us.

Yes, I need to be careful of this too. It’s true that I don’t understand people. But at least I am aware of my lack of understanding. I struggle. I really struggle. People are incredibly hard sometimes. But things like this just make it harder, so just fucking stop it already.

Stop misrepresenting what we say. Stop disregarding us. Stop pushing us out of our advocacy. Start noticing that we have things to say, and we are saying them, and we deserve to be heard! Parents, get out of your own heads for a few minutes at a time, and try to see things from your child’s point of view. And yes, it’ll be hard. We’re different from you, and many cannot communicate with you easily. We have impairments in that area. But this is where adults on the autism spectrum can help. We’ve been there. No, we do not know your child as well as you know your child. But we know what it’s like to be on the autism spectrum. I can tell you about myself and hope that some of it applies. I can tell you what I believe and what I feel and where I’m coming from and all you have to do is listen.

I see so many parents talking to other parents, and so little talking to adults on the spectrum.

Please just listen.

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5 Comments

Filed under rant

5 responses to “Stop Saying That!

  1. Greg

    You and other adult autistic bloggers (and authors) have been invaluable in helping me understand my son and, in turn, helping him accept himself and learn to articulate issues, concerns, ideas and more in ways that lead to advocacy rather than that horrible feeling of smacking ones head against a wall. It isn’t easy to teach an old dog new tricks – just as it surprises my son when I explain how some actions could be interpreted, it surprises me when he explains the same thing! – but I’ll continue to listen and learn as long as y’all keep talking!

  2. jess

    Andraya,

    It hurts like hell to read this. I am so, so sorry if (no, clearly THAT) I made you feel this way. I do everything I can to step out of my own head and look at the world through my daughter’s eyes at every turn. Given that we experience the world very differently, that is not always an easy task, but I keep trying. And I often address other parents directly when I write because I want to convince them to try to do the same. I never, ever, EVER want you or any other person, autistic or otherwise, to feel OTHER in my presence. I will do everything I can to be more sensitive to the fact that my readership is diverse, because I am incredibly grateful that it is. Please accept my apologies and know that there is nothing more important to me than respecting the people in the community of which my daughter is a part.

    Jess

    • Sorry about the delay in my response. I’m trying to figure out what I want to say to you and not having much success.

      First of all, I do accept your apology, and I very much appreciate that you do put in the effort and you do care. These are wonderful things and I am not blind to them.

      While I cannot deny that it was a post or two of yours that triggered this, I can at least tell you that this rant is also a jumble of quite a few frustrations all mashed together. I try to keep it all in, and once in a while there’s just an avalanche.

  3. Scriven

    Well said.