actual autism awareness – Real Social Skills

Being allowed to do hard things

August 19, 2013June 14, 2021 Real Social Skills

Mel Baggs added to the post on “Some things about speech“:

I used to have a really hard time convincing people that sometimes lack of speech wasn’t overload or shutdown (or as psychiatry so inaccurately put it, ~anxiety~ or ~dissociation~), but rather just being myself.

And that far from always being a result of stress, speech caused me stress and lack of speech meant I was less stressed.

I knew the autism expert I saw was no expert when I heard her tell me that if we reduced my anxiety, I wouldn’t have to rely on my keyboard so much. Later on I found out she believed meltdowns and shutdowns were not sensory at all but rather ~off task behavior~, ~manipulation~, and ~tantrums~… And I lost my last shred of respect for her.

Also, even when it *is* the result of stress, that doesn’t necessarily mean that something is *wrong*.

Sometimes it just means that life is happening. Like, when I’m doing hard things, my speech gets worse. When I’m working a lot, I look more conspicuously autistic.

This doesn’t mean I shouldn’t work or study or do hard things. It’s important for us to be allowed to do hard things, and to be allowed to be stressed and have lives. Stress is part of life.

Sometimes people try to put us in bubbles where we don’t ever do anything hard or stressful. And take any autistic sign of stress as an indication that something is wrong. And that things need to be lighter and softer and less substantive.

Those places are not good and they are not understanding or accepting. They are hell on earth.

Some things about speech

August 19, 2013June 14, 2021 Real Social Skills

Sometimes people have speech at some times, but not others.

Sometimes people have very fluid fluent speech sometimes, and choppy forced slow speech at other times.

Sometimes when people can’t speak, or have trouble speaking, it’s because something is wrong. Sometimes it’s because they’re stressed, or overloaded, or forgot how because they’re frozen and need help getting unfrozen. Or because they’ve pushed themselves too far and are just too exhausted to function.

But losing speech, or losing fluent speech, is not always like that. Being in a mode where speech is difficult or impossible is not always a sign that something is going wrong. For some people, that’s just a mode they can be in, sometimes.

It can mean they are prioritizing different things, putting more resources into thinking rather than speaking. It can mean they are in a more sensory mode rather than a WORDS WORDS WORDS mode. It can mean they’re interacting, and that it’s about presence and not conversation. Or any number of other things.

To make a somewhat flawed analogy: People don’t usually speak during movies. When people aren’t speaking during movies, it’s not because something is wrong. It’s because they’re doing a different thing.

It’s important to know that both of these things exist. That sometimes lack of speech or difficult speech means something is wrong, but sometimes it means something is right.

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

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.

About speech abilities

January 5, 2013June 21, 2021 Real Social Skills

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.

Autism awareness for aides

January 2, 2013June 21, 2021 Real Social Skills

flannelfrog asked:

I recently got a job offer to be an in-school aid for a gradeschooler I know with aspergers and I’m genuinely afraid to take it because, while I have teaching experience, I’ve never been an aid before. I’m afraid I’ll do something wrong and mess the kid up for the rest of his life. Do you have any advice for me?

Several piece of advice:

First, shift the way you’re thinking about this.

The problem before you is how to do right by a kid in your care. Thinking in terms of wanting to avoid doing something wrong and messing the kid up for the rest of his life is going to make it harder for you to do right by him.

You’re going to do things wrong (you’ve done things wrong in every teaching job you’ve had, it comes with the territory); and it’s going to be important for you to acknowledge and fix your mistakes. Making possible mistakes, even serious ones, a referendum on whether you are a good person, makes it a lot harder to do right by others. I’ve written about that before, here.

Treat him as a person

Almost universally, autistic people are treated as though they aren’t quite real, especially by caregivers
Often, they think of this as looking past the autism to see the real person
But the autism is part of who he is.
Don’t attribute some things to him, and others to the autism. He is real all the time.
He is a real person. Already.
Your job is not to cure him. Your job is to support him and help him to develop his abilities. Learning to do more things will not make him any less autistic, nor should it.

Do not try to make him indistinguishable from his peers

Because, seriously, what kind of a goal is that?
He’s worthwhile as a person, and he’s different from most other people, and it’s ok.
He has better things to do with his time than fake normal.
Being able to do awesome things is way better than being able to look normal while doing pointless things
It’s ok to be different.
Don’t pretend that he’s really just like everyone else, or that he will be when he grows up.
One of the most important things you can teach an autistic child is that it is ok to be autistic

Forget everything you think you know about the difference between autism and Asperger’s syndrome:

People whose diagnosis is Aspergers syndrome are autistic
Autistic people who can speak are disabled
There isn’t actually any fundamental difference
Except that people considered autistic are often seen as incapable, and people considered to have Aspergers are often seen as faking their difficulties
Assume disability and ability, and that you will have to figure out how that works for the person you’re working with

Learn how he communicates.

All autistic people have some sort of atypical communication
Some autistic people are really good at hiding it, and looking normal at the expense of understanding what is going on.
Autistic children, particularly boys, often pretend to be acting out in order to mask disability. Be mindful of this possibility.
A good percentage of the time, when autistic people repeat things over and over, they are trying to communicate something and aren’t being understood. Be aware of this, and learn how to make communication possible in this situation.
If he seems not to understand something, do not get angry and assume he’s just being defiant or lazy
Some things are really really hard to understand, even though they seem simple to people with typical development
For instance, an autistic child who has been isolated might find fiction other kids their age understand completely incomprehensible because they can’t relate to the experiences and relationships it describes

If he makes repetitive motions, assume they are important:

A lot of autistic people rely heavily on motion to think well
Or to communicate
Or to understand things
Or to find words
Or to regulate themselves.
If you prevent an autistic person from making repetitive motions, you’re probably also preventing them from doing things like understanding what’s going on, communicating, and learning self-control and interaction.
Do not value a typical affect over learning and communication.
Do not say “quiet hands” for any reason ever. (Unless you’re saying something like “people shouldn’t tell you ‘quiet hands’”)

Do not make him follow rules the other kids are allowed to get away with breaking

Because that’s unfair, and humiliating
And it also prevents peer relations
It also prevents him from learning how rules actually work, which is a vitally important skill, especially for people who are likely to spend large parts of their life subject to arbitrary decisions made by people with too much power over them

Do not confuse him about consent, and help him learn what consent is

If something is an order, do not phrase it as a request. Doing so teaches people to be incapable of saying no.
Ask a lot of questions that actually are requests, and go with what he says, even if it’s not the answer you wanted.
If he always says yes when you ask him things, assume this is because he has been taught to be incapable of saying no
Ask questions in ways that remind him that saying no is possible
Or questions in ways that don’t seem to create a compliant option and a defiant option at all.
For instance “do you want to stay inside today, or would you rather play on the swings?”
But questions that are real. Not forced choices in which each option is basically compliance.

Support him in navigating the difficult and often hateful world he lives in

Do not make him play with kids he dislikes, even if this means he doesn’t play with anyone
There are worse things than being alone. Being surrounded by people who everyone insists are nice and your friends, but who actually don’t think you’re real or treat you well is much worse than honest loneliness.
It’s possible, and likely, that there are very few kids, or even no kids at all, in his group who it is a good idea for him to spend time with
And even if you think he’s wrong about this, it’s a decision he should be making for himself (and his judgement is probably better than yours)

When kids or adults do bad things to him (and they will), you usually won’t be able to make them stop. You should tell him that what they’re doing is wrong, and that it’s not his fault.
Knowing that it’s wrong, and that others know it’s wrong, helps a lot.

Some things you should read:

Ballastexistenz From the beginning. Every post. It has a lot of fundamentally important things about power, and dehumanization, and about seeing people as real. This blog has a lot of the best things that have ever been written on this topic.
Rolling Around In My Head is also a really good blog, written by a disabled man whose professional work is supporting people with disabilities. He says a lot of things worth knowing. Also his book Power Tools is important for understanding how this power dynamic works – and your environment and training will put pressure on you not to understand it.
Loud Hands: Autistic People Speaking is a really important book about autism and the world written by insightful autistic people. Buy it and read it and understand it, and it will help you to do right by this boy and others