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.