White words on a dark green background say: The biggest picture doesn't have an autism community. It's where we celebrate the autistic community - Naomi

The Biggest Picture

The internet has been a massive boon to me. I’m a bit (ha!) of an introvert, and I like to hermit at home. I’m isolated from friends both
by distance – I live rurally – and by having an extremely small circle of people I’m comfortable with and that I share common interests with. I use the internet to gather information, to talk to people all over the world, to find my tribe. It expands my social interaction a hundred fold. I love it.

There is one place on the internet I refuse to go.

I’m an autistic person. I’m a parent, and I have three children. One of those children is also autistic. So you would think, really, that the autism community would be somewhere I would meet people that I share interests with. People who understand me and my child, people who welcome us

But it doesn’t.

You see, the autism community is *not* the autistic community. It isn’t made up of autistic people – it is made up primarily of parents of autistic people. It isn’t about autistic people – it is about parents of autistic people. Above all, it isn’t safe for autistic people. Our voices, our experiences, are not welcome there.

That sounds really harsh, I know. And it may dismay some people reading this who are part of the autism community. It will probably make others in the autism community angry. But that’s ok. Because you see, I’m used to that. We all are. Autistic people are used to the autism community being
angry at us when we speak up. It happens all the time.

Except it isn’t really ok. And there is something really wrong with a community who is apparently about supporting autistic people instead choosing to ignore what autistic people say. But it happens all the time.

I can’t go there. I can’t listen to people talk about their children as if those children are a terrible burden. I can’t listen to people
talk about physically forcing a child to stop stimming, about trying to cure them of their basic neurology, about how successful they are being in teaching their child to suppress themselves and appear “normal”. And it isn’t just because it breaks my heart. It’s because I actually *can’t*. I’ve tried.

I’ve tried to talk to people about how being autistic isn’t actually a terrible thing (and that I know this, because I am). I’ve tried to
suggest ways that parents can support children to grow and change without coercion or physical force. I’ve shared links to other autistic people who have experienced the kinds of therapies that parents are taking their children to, trying to get them to see how the people who have actually been there and done that feel about having been there and done that. Over and over again, I’ve tried. And there are so many other people out there, just like me, who have tried. Are still trying. Over and over again.

But if there is one thing that I’ve learned about the autism community, it is this – there is no space for autistic people there. Our experiences are not wanted. Our voices are ignored, invalidated or abused. After all, who are we to tell someone else how being autistic feels? Right?

So I don’t go there. The autism community is not a place for autistic people. There is no place there for me, and no place for my child. Our
voices don’t matter there. Our needs are not going to be met there. We are not respected there.

I’m going to tell you the inspiration for the title of this post. Not long ago here in Australia, an autistic teen was found chained to his
bed alone in a house. And of course, if you are in any way familiar with the autism community, you will know how this goes, almost word for word. There were lots of comments about how hard it must have been for the parent who chained the child to the bed, how there must be a lack of services, how parenting autistic people is just so damn hard and people have no idea…. Thankfully, not all of them were like that. But many where.

Reading those, as an autistic person, was frankly really horrible. And when I pointed out that treating autistic people like this was not ok, talking about us like this was not ok, I was told by a parent of an autistic child that I simply didn’t understand. That I needed to “see the bigger picture”.

I’m not sure what I was meant to see. I’m not sure what the bigger picture could be. But I know what the biggest picture is. The biggest
picture is one where autistic people are valued, respected, cared about and heard.

Where a parent chaining an autistic child to a bed isn’t justified by other parents who then get offended when autistic people point out that abuse
is abuse, and never acceptable.

Where the autistic person in such a story doesn’t remain nameless and voiceless.

Where there isn’t actually that kind of story at all, because the story of autism is written by autistics, written by our flappy hands, tapped out on our devices, danced around my living room floor.

The biggest picture is one that doesn’t have an autism community.

It’s one where we celebrate the autistic community.

3 replies
  1. autisminquietplaces
    autisminquietplaces says:

    I would like to delete my previous comment (not yet published) and post the comment below instead:

    I don't think the "autism community" is one thing, one voice, or a cohesive group with one agenda. I imagine that the autism community is diverse with many different voices. Yes, there are a lot of parents, but the parents are a diverse group as well. There is no "one" spokesman for the parents. I think it is important to make this distinction.

  2. willaful
    willaful says:

    I relate to this a lot. I'm used to doing a lot of my socializing online, but I haven't been able to find any good spaces either. I go to a parent support group which is designed to be non-judgmental, which is nice, except I'm starting to feel like it's full of micro-aggressions — parents talking about their kid possibly being "cured" and using questionable treatments. Though at least they all clearly do love their kids.


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