actual autism awareness

[redacted] asked realsocialskills:

…For the not teaching disabled children that their bodies are “wrong,” what are ways to avoid that? The article described why it is bad, but what are things people can say or do when in therapy or school settings, the goal is to change or level up their abilities in some way? 

I think there are several things that help.

First and foremost, you have to act as though they already have value. Part of what that means is helping them to do things they care about, and not making those things into therapy. If everything someone cares about inevitably becomes therapy, it’s hard to keep caring about things. And it undermines their ability to understand they they already have value, even without being cured. Actions speak louder than words.

For instance:

  • If a kid likes trains, let them do train-related things for its own sake. Don’t make everything train-related into therapy.
  • Don’t make everything train-related into an incentive for complying with therapy, either.
  • And buy them train related things without requiring them to earn them with a therapy sticker chart
  • Let trains be trains, sometimes. And make sure the kid can count on being able to do thing they care about.
  • Kids need to have interests and to pursue them.
  • If therapy always takes priority, that’s a problem. That sends the message that therapy, and becoming more normal, is more important than anything else.

Involve them in decisions about therapy

  • Parents have to make certain decisions for their minor children, especially when they are very young
  • But they don’t have to make all of the decisions
  • And even when they do have to make the decisions, they can and should listen to what their kids think
  • If the child understands what the therapy is for, and says they don’t think it’s worth it, consider the possibility that they are right.
  • And if you decide they are wrong and that you’re going to make them do it anyway, tell them why
  • And if a kid dislikes a particular therapist, assume there’s a good  reason unless you have strong evidence otherwise. (Particularly if they don’t object to the therapy and are fine with other therapists)
  • And the older a kid is, the less appropriate it is to force them into therapy
  • Kids with disabilities need to grow up and learn to make their own decisions just like kids without disabilities do
  • Completely controlling their care is not conducive to their learning how to make decisions about it

Be particularly careful about surgery and painful therapy

  • If you’re making a kid do something painful, make damn sure you have a good reason
  • This goes double if the kid objects to the therapy
  • Because being overpowered and subjected to pain at the hands of large adults is traumatic
  • Sometimes it’s necessary, but it imposes a heavy price. Don’t ignore the price.
  • Don’t do it without a good reason
  • And, the older the kid is, the better the reason needs to be.
  • Teaching a teenager that they have no right to control what happens to their body is *really* dangerous.

Distinguish between leveling up abilities and normalization

  • This is hard to explain. I’m going to write more posts about it at some point

Don’t do long-term 40 hour a week therapy programs.

  • Kids need time to do things other than therapy
  • They also need space to explore and do things on their own initiative
  • They can’t do that if almost all of their time is spent doing therapy
  • And it’s ok if that means sometimes they watch the same YouTube video over and over for an hour
  • Or spin toys
  • Or sit on the floor not exercising

Make sure they know adults with disabilities

  • It’s hard to believe that you’re going to grow up if you never meet any adults like you
  • Adults with similar disabilities know things that you don’t
  • Even if you have similar disabilities, make sure your kids know other adults with disabilities
  • Kids need role models and clueful adults other than their own parents
  • (I’m not sure how this works for kids who aren’t likely to survive childhood. I think it’s probably still helpful, though.)

Make sure they know other kids with disabilities

  • Having a peer group is important
  • Growing up without one is really isolating
  • That said - don’t assume that kids will be friends just because they have similar impairments
  • Not all kids like each other, and that’s ok
  • Trying to force kids to be friends isn’t helpful

Talk about it explicitly

  • Kids need to know why they have therapy. And what it’s for. And what’s different about their bodies.
  • Kids who are disabled enough to need therapy know damn well they’re different
  • They don’t necessarily know that it’s not their fault, though
  • Or have any good language to think about it
  • People with disabilities are almost completely unrepresented in the media, and what little media we have is almost always dangerously inaccurate
  • This is confusing and disorienting, and kids look for the closest available concepts to make sense of things
  • For instance: Almost all kids know that bad kids get punished by being made to do things that are painful and unpleasant. 
  • If a kid is regularly made to do things that are painful and unpleasant that other kids don’t have to do, and no one explains why, it’s really easy for them to end up thinking they’re being punished for being bad.
  • And they can end up thinking they’re being punished for being bad for failing to do things they’re incapable of doing
  • This can happen even if no one ever says this to them; but most kids with disabilities get told this more or less explicitly at some point
  • (Eg: by religious people who tell kids that if they prayed hard enough they’d be cured; by teachers who tell them if they just tried hard enough they could do what the other kids do)
  • So talk about it
  • Even if you’re not sure they have receptive language

Something awareness ought to mean

Here’s a thing that happens:

A kid has a disability. Or is otherwise substantially atypical.

And the adults in their life don’t want them to feel different and suffer for it, so they don’t talk to them about being disabled.

And then they grow up without basic information about their body (or brain).

And then every description of how people work is different from what the kid experiences. And it’s confusing and isolating, and hard to even realize how things are wrong.

Because fish in water don’t know they are wet. It’s hard to know that the descriptions are wrong when you don’t know it’s possible for them to be right.

And then, sometimes, people who grow up that way eventually find out that they actually are different. That there is a word for the way their body and mind works. That there are other people like them, and that the world makes much more sense than they ever realized.

That’s something that awareness should mean. Kids need to know how their minds and bodies work; atypical kids need accurate information just as much as other kids do. They just don’t usually get it.

Another kind of reply

lawlandauror asked realsocialskills:

.There is a sorority at my college who’s charity is Autism Speaks. All their promotional material and events are making me really uncomfortable. I’m not autistic but I am nueroatypical. I don’t want to talk over autistic people, but I also don’t want to stay silent. What can I do in this situation?

A few things I’d say, in addition to signing the pledge and urging others to do so:

I think what you need to bear in mind is that you’re not speaking for autistic people, you’re saying why Autism Awareness is bad. You don’t need to be autistic to understand that. So long as you’re not claiming to speak for others, I think you’re probably ok.

(For instance, don’t say “autistic people don’t like autism speaks!”, say something like “autism speaks doesn’t have any autistic people in positions of leadership and that’s a problem”).

Also, don’t expect any kind of emotional reaction from autistic folks as a result of what you say. Don’t expect autistic people to be grateful, or to be moved that someone is saying something. Sometimes that might happen. But it shouldn’t be the reason you’re speaking up, and it shouldn’t be something you expect. If you’re putting additional emotional pressure on autistic folks, you’re doing it wrong. 

And also, Awareness paints a pretty broad brush. Autistic people get the most direct hate this month, but it’s also when people promote a model of neurological disability that’s dangerous for everyone. Feeling personally threatened by that is not appropriative or silencing. If that’s part of what’s going on for you, it’s ok to say so. 

Typing is important

Some people communicate better by typing than they do with their voices.

Some people need to do both at different times, or even within the same conversation.

Maybe you’re like that. Maybe you could say more things if you used your hands and a keyboard rather than your voice sometimes.

You almost certainly know people who could communicate better if they didn’t always have to speak.

Knowing that this is a thing is important. So is being a safe person for other people to type to if they should.

About speech abilities

Some people can speak easily.

Some people always have difficulty speaking.

Some people never speak at all.

Some people can speak, but at a cost that’s not worth it.

Some people are better off communicating in other ways.

Some people speak sometimes, and type other times.

Some people have words all the time; some don’t.

Some people can speak fluidly, but only on certain topics. (Just like how one can be fluent in some topics in a foreign language, but be unable to read the news).

Some people lose speech at certain levels of stress.

Some people rely on hand movements and stimming in order to find words.

Some people have a monotone and convey tone through motion.

Some people make a lot of mistakes with words, and rely heavily on tone to make themselves understood.

Some people rely heavily on scripts, and only sound normal when they stay on-script.

Some people use phrases from television.

Some people communicate by repeating themselves, and tend to be perceived as not communicating.

Some people say a lot of words they don’t understand, and are perceived as having meant them.

Some people substitute one word for another a lot, and don’t always realize it.

Some people can answer questions even when they’re having trouble initiating speech.

Some people who find speech easy sound odd.

Some people who find speech difficult sound normal.

You don’t really know how someone communicates until you’ve communicated with them substantially, and even then, you only know in the context you’ve communicated in. Appearances can be deceiving. 

And it’s important to be aware that all of these things exist.