Don’t teach kids that their body is wrong

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.

Autism awareness for aides

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

Keeping your touchy-feely off others.

“I’m a touchy-feely person.”

Some people say this a lot. Some of them are really, really scary and dangerous people.

Sometimes what people mean by this is “I’m the kind of person who is allowed to touch and feel people, and I don’t have to consider whether it is welcome”.

Sometimes this is physical. Sometimes it means people feel entitled to hugs. Or to stroke someone’s hand or hair. Or they think routine interpersonal touch is a basic necessity, and that the mainstream-expected physical boundaries are bad, and that they can make things better by unilaterally violating them and touching people.

Sometimes it’s emotional. Sometimes it means that they want to be an intimate part of people’s emotional experience. Sometimes it means they unilaterally share personal things, and act as though that creates a reciprocal obligation. Or they think that our society is too emotionally closed off, and by unilaterally imposing an intimate emotional tone to their interactions, they are making things better.

Sometimes people who do this think that people who don’t like this are just repressed. Or, worse, sometimes they think that people who don’t like this don’t actually exist, and that everyone likes it, deep down. That’s really dangerous, especially when people do this to people they have power over. (Which is really, really common, especially with people who work with children, especially with people who work with non-verbal children.)

It’s really important to interact with the person you’re actually with. You can’t do this by constructing an imaginary person you see as the Real Them, and by acting as though they want what the Real Them would want. You have to interact with the actual person, and respect their actual communication. Which means, if they don’t want you touching and feeling them, physically or emotionally, you need to take that seriously and back off.

Intimacy is a beautiful and important thing, but forced fake touchy-feely intimacy is a horrible thing.

If you want to be touchy-feely, touch and feel people who want that from you, and keep your hands and emotional feelers off others.

Social skill: Respecting the closet

It’s not always safe for people to be out. How out to be is a personal decision.

Don’t assume that someone being out in one context means they’re out in call contexts.

Do not ask if someone is gay within earshot of their boss or parents or anyone else who has power over them. No matter how cool you think those people are.

Recognize that your personal attitude about gay/queer/trans/other dangerous secret, does not protect people from the consequences of being out.

The larger context in which being out is dangerous exists no matter what you do – you can only make the world a bit safer by being trustworthy, and part of that is respecting and keeping confidences.

(And this applies generally to stigmatized categories, not just sexual orientation stuff).