autism – Page 7 – Real Social Skills

Some ways to avoid teaching children that their bodies are wrong

May 30, 2013June 21, 2021 Real Social Skills

A reader asked:

…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

Don’t teach kids that their body is wrong

May 24, 2013June 20, 2021 Real Social Skills

Something that can happen in therapy for disabled kids is:

People hold out hope that the kid won’t be disabled anymore, when they grow up.

So they push the kid as hard as possible in childhood, and tell them (often without saying this explicitly) that if they just work hard, their body won’t be wrong anymore.

This doesn’t work.

People who are disabled as children are usually still disabled as adults. Even if the therapy helped them. Even if they gained new physical abilities. Even if they learned things from it they wouldn’t have learned without it.

Even if they learn to walk. Even if they learn to talk. No matter what other skills they acquire. Their body is probably going to stay very different from most other people’s bodies, and far from the cultural norm.

And… part of living well as a person with a disability is accepting the body and the brain that you have, and working with it rather than against it.

Because you can’t live in an imaginary body; you can’t live in an abstraction. You have to live your own life, as you actually are. And sometimes that involves medical treatment, sometimes it involves equipment, sometimes it involves therapy – but always, it involves reality. You can’t willpower yourself into being someone else.

Disabled kids tend to get taught the opposite message, because childhood therapy is usually cure-oriented even for conditions that aren’t anywhere close to curable. It’s about normalization, much more than functioning well.

Then they go through all manner of hell unlearning this once they’re old enough that everyone gives up on pretending that a cure is going to happen.

If you’re responsible to or for kids with disabilities, do what you can to protect them from this. Make sure they aren’t being pushed to hang their self-worth on accomplishing things that are physically impossible or implausible. Help them to understand hat their bodies aren’t wrong. Teach them that they already have lives worth living.

Don’t hang your legitimacy on ideology

April 14, 2013June 20, 2021 Real Social Skills

This dynamic happens a lot with autistic or otherwise socially-marginalized people:

You’re not treated as fully real, for your whole life
And you don’t even realize it, because it’s pervasive. You don’t know that it’s possible to be treated as real. You don’t know this isn’t normal.

And then you discover a group of people who seem to approve of you

They’re an ideological group, and they approve of anyone who shares their ideology
And their ideology seems plausible, or valuable, or good
And it has some concepts that allow you to understand things you never understood before
And you adopt the ideology
You’re accepted into the group. In a way you’ve never been accepted before.
And they treat you more like a real person than anyone else has before
And you yourself *feel* more real than you ever felt before

And so you throw yourself into the ideology

Passionately, completely, and sincerely
And you care deeply about understanding it, and using the concepts, and doing good and right
And so you work really hard
And then, eventually, this pulls you away from the ideology
Because you learn something, or notice something, that the ideology doesn’t cover
And that makes you a heretic
And you lose your standing in the group

And then they stop treating you as real. And then you wonder if you are real, if maybe you’re just not good enough for anything. And then maybe you find another ideological group, and it repeats over and over and over. Because you think the problem is that you just haven’t found the right ideology, and that if you find the right one, it won’t fall apart.

Until you realize that, actually, you were real the whole time. And that groups that only think their members are real people are never going to solve the problem. And that when they treat anyone as non-real, it’s a threat to you, too. Because you have to think everyone is real, because everyone *is* real. And seeing people as unpeople is always destructive.

And then you realize that the world is both better and worse than you thought it was. Worse, because there’s no ideological group that will solve everything, but the awful things the ideological groups notice are often true. Better, because everyone is already real, and genuine respect between people is already possible. Because you don’t have to wait for a revolution to be a person, and neither does anyone else.

Another kind of reply

April 6, 2013June 21, 2021 Real Social Skills

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

April 5, 2013June 20, 2021 Real Social Skills

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.

Something non-autistic folks can do to combat the Autism Awareness mentality

April 4, 2013June 21, 2021 Real Social Skills

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?

You can sign this pledge, and urge others to do so (https://www.autismacceptancemonth.com/pledge/):

I pledge to only attend, speak at or otherwise participate in autism panels, conferences and events that meaningfully involve Autistic people. I choose not to give my business or my time to settings that fail to include Autistic voices in conversations about autism.

Example of assuming we’re not listening: TalkingTiles

February 3, 2013June 20, 2021 Real Social Skills

There is an AAC app called TalkingTiles, that uses an interesting approach to managing communication pages. It offers cloud-based subscriptions and a library of available tiles, and can sync across multiple devices. It’s also possible to edit communication pages on a computer rather than on the iPad or whatever other mobile device it’s running on.

That’s good. What’s bad, is that they think of the users of this app as parents and therapists working with people who need communication software. They don’t seem to consider the people who actually use the app for expressive communication to be users; the app is something that is used on them rather than by them.

They describe it thusly:

TalkingTILES has helped those inflicted with a communication disability brought on by a neurological disorder (such as Autism, Cerebral Palsey, ALS or Parkinson’s) as with those who have suffered a trauma (such stroke or brain injury). We’ve taken a collaborative approach to AAC bringing together professionals (therapists, educators and support workers) and their clients,caregivers and families, enabling remote programming and remote content sharing across each other’s devices making AAC therapy more productive and efficient for both client and professional.

Do you see what’s missing here? The end user, the person who will actually be using the device to communicate, is not addressed directly.

And it’s much more explicit in the user accounts. You have to have a cloud-based subscription to make the software do much, and there are two kinds of accounts:

TalkingTILES for Professionals & Caregivers :

• Professional AAC Support Teams – therapists, educators & support workers- your Mozzaz Cloud Subscription is FREE. We want you to learn, try and trust TalkingTILES as an effective AAC solution for your clients.

• Caregivers & Families – we understand the challenges and commitments that come with supporting and helping your loved one with a communication disorder. TalkingTILES offers the most flexible and adaptable AAC app that can be tailored to your personal needs at a very affordable price. We make AAC therapy productive and efficient through our collaborative model with professionals on your team. A Mozzaz Cloud Subscription plan will save you time, money and be more efficient with your AAC goals and programming.

There isn’t an option to register an account for yourself, as the person who will actually be using the app to communicate. There should be. People who use software to communicate have agency, and sometimes look for software options for themselves. Product descriptions, marketing, and design ought to take this into account.

When you’re designing adaptive equipment or software for people with disabilities, please remember that people with disabilities use it, and address them when you describe your product.

Remembering that people with disabilities have always existed

January 31, 2013June 20, 2021 Real Social Skills

Content warning: This post talks about institutionalization in graphic terms. Proceed with caution.

Sometimes people say things like this:

“When I was a kid, no one had all these learning disabilities and syndromes!”
“We’re all so much sicker these days. I never heard of all these diseases until recently.”

And – people who say this? You know why you never met anyone like this as a child?

Because, when you were a kid, people with learning disabilities, syndromes, illnesses, etc weren’t allowed to go to your school. A good percentage of them weren’t even allowed to live in your town.

They were kept away from people like you, and kept in horrifying conditions, so that you and other more socially valued people wouldn’t have to see them or know they existed. (It’s not your fault. You were a child and didn’t know. But it was done in your name, partly.) And a lot of them did not survive childhood because they were not given the care that would have made it possible. And this isn’t over. This still happens.

(And people with disabilities are still afraid of it happening to them).

But thing are getting a bit better – or, more accurately, people who have been fighting this evil for decades are starting to win.

So, these days, many children like those who were carefully kept away from you and your peers are allowed to grow up in families. In schools. As part of their communities. Visibly. And, this means more of them are suriving childhood.

And some adults with disabilities are now treated as adults and allowed to acknowledge disability without forfeiting adulthood. Not everyone, not yet. Not enough. But some. More than there used to be, fewer than there should be.

People with disabilities have always existed. And the fact that everyone now has to notice that they exist is a dramatic improvement. It’s a good thing that you see more people with disabilities now. It means some of them aren’t brutally hidden in institutions. Your children are growing up in a better world than you did. Remember this.