talking to kids about disability

Sometimes parents avoid talking to disabled kids about disability because they don’t want to make them feel different.

The thing is, it’s not actually possible to prevent your child from noticing that they are different. They will notice that they aren’t just like all the other kids. Partly because it’s obvious. Kids compare themselves to other kids, and to adults that they observe. Disability is as noticeable as the fact that some people are fat, female, tall, short, black, white, or whatever else. Kids notice differences. They will notice this difference too. And that’s ok.

They will notice that you are willing to talk about some differences, but not others. If you refuse to talk about disability, they will still know that they are different. They will just learn that you consider the difference unspeakable.

They will also notice what other people think about them and their disability.

People will stare at your child and make disparaging remarks. People will call them the r-word, and every other disability slur. They will say “special” and “special needs” with a sneer. They will make fun of your child for not being able to do things. They will say, or imply, that they would be able to do them if they’d just try harder.

You can stop some people from doing this to your child (and you should), but you can’t stop them from ever encountering it. They will probably encounter it every day. They will know that they are different from other people, and our culture will teach them incredibly destructive things about what that means.

You can’t stop your child from hearing what our culture thinks of disability — and if you don’t talk about disability yourself, your child will believe that you agree with it.

If you don’t talk to your child about their disability, the only words they will have for themselves are slurs they hear other people call them. You can give them better words, and better information.

If you don’t talk to your child about their disability, they will end up with a lot of misinformation about what their difference means. If you talk to them, you can tell them the truth.

Short version: Refusing to talk to kids about disability doesn’t protect them from feeling different. It just prevents them from getting accurate information about what their disability is and what their difference means. When kids who don’t know the truth about their disability face hate, they have little-to-no protection against internalizing it.

Disabled kids need to be able to talk about disability. Difference isn’t a good enough word. Everyone’s different from everyone else in some way. Not everyone has a disability. People who have disabilities need to be able to talk about that, both in general and specific terms.

I’m writing this partly in response to comments I’ve seen on several good posts that have been circulating recently on why it’s important to tell autistic kids they’re autistic.

I’ve seen some parent responses that seem superficially positive, which actually miss the point:

“Yes, we told him about that. We told him it’s the thing that makes his brain different, and that it’s why he’s so smart.” or
“We told her that autism means she’s awesome!”
“We told him he just thinks a little differently.”

That’s not good enough, because it doesn’t address autism as a disability. Knowing the word “autism” only goes so far. Kids also need to be able to talk about disability in a nuanced way, without glossing over things.

Kids will know that there are difficult and painful aspects of being disabled whether or not you talk about it. You can’t protect children from that knowledge by refusing to talk about it; you just end up sending the message that they’re on their own in dealing with it.

Here are some other things autistic kids need to know, beyond the word autism (not an exhaustive list by any means):

The basic version:

Autism is a disability
It’s one of the reasons some things are really hard for you
It also comes with strengths
You’re not going to grow out of it. You *are* going to grow up.
You can do things that matter.
There are other kids and adults like you, and we’re going to help you meet some of them
Some people are prejudiced against people like you. It’s ok to be upset about this.
Some things are going to be different for you than they are for most other kids, in ways that might not be predictable.
It’s ok to have questions
It’s ok to feel however you feel about all of this
Your parents and other supportive adults are here for you, and will help you figure things out and get help when you need it

Some other, more complicated (and also not exhaustive) information:

Most autistic people experience sensory overload in at least some situations. There are strategies for dealing with that which work for some people.
Stimming is important, and people who denigrate your body language are mean.
Sometimes being disabled really sucks, and it’s ok to be upset or frustrated. You don’t have to pretend things are ok when they’re not. Your feelings are yours.
Your development will look different in a lot of ways, many of which will be unpredictable. Some people will (wrongly) describe this as you “failing” to meet milestones. You’re not broken and you’re not failing. This is normal for people with unpredictable developmental disabilities, and it’s ok
You can learn adaptive strategies for some of the things you can’t do in the usual ways
There will also be things you can’t do, and that’s ok. Part of what you’re going to have to do is figure out what your limits are. This will take calibrating; you and others will get it wrong in both directions.
There will likely be things that you can’t do at the expected age that you are able to figure out latter
Some skills that everyone treats as really important now won’t matter later. Once you are out of grade school, no one will care whether you have strong scissor skills or whether you sing along to the turn-taking song in circle time.
You have strengths, and your strengths are worth respecting. Some of them come from the ways that your brain is different.
It’s also ok to do things that you’re not naturally good at, and to learn what you want to learn
It’s ok to like what you like. Whether or not anyone thinks it’s ok for you to like; even if people say it’s not age appropriate.
It’s not ok for people to treat you like you’re much younger than you actually are.
Personhood is not something you have to earn with feats of genius. You do not have to lead revolutions in software or animal welfare to be ok.
You’re already a person, and you already matter.
People who don’t respect you are already wrong; you don’t have to prove them wrong to justify your existence
There is no shame in needing to learn social interaction, and people who treat it as shameful are wrong. No one’s born knowing how to interact with others well, everyone has to learn it, and differences in your social learning aren’t flaws.
There are other people like you
Some of them are adults
Many of them are happy
When you are an adult, you will still be autistic and you will still be disabled. That’s ok. You don’t have to cure your disability to become an adult.
As you grow up, you will most likely develop sexual and romantic attraction. Most people do (not everyone, and that’s ok too.) You have as much right as everyone else to have your maturity taken seriously, including sexual maturity.
You will still deal with prejudice as an adult. It doesn’t go away when you graduate high school. It does get more bearable when you have more control over your life and more skills for coping with prejudice.
You can have a good life. Neither living with a disability nor living with prejudice makes happiness impossible.
You do not have to live with your parents forever, and you do not have to live in an institution or group home. Other people like you are living as free adults.

And any number of other things.

Disability is complicated. Disability is something we spend our whole lives dealing with, and that we never stop learning about. This is not something you can cover with your child in one conversation When you talk to your kids about being disabled, it’s really important to let it be complicated, and to be honest about it being a long-term conversation. It’s important that they know that you can handle talking about it, and that it’s ok for them to have questions, feelings, and to need help figuring things out.

Short version: Telling your autistic kid that they are autistic isn’t enough. You also have to talk to them about disability.

Real Social Skills

Tag: talking to kids about disability