Chapter 9

Being an ally

An ally is someone who isn’t autistic that helps autistic people. They listen to autistic people and help us get what we need.

This chapter will cover the basics of being an ally. This chapter is for non-autistic people who want to be allies. You might be our family, our friends, or you might just be interested. Autistic people might be interested in this chapter, too. Every autistic person has different needs, and we can all learn how to be better allies to each other.

The basics of being an ally

There are lots of ways to have a brain. Some people are autistic, while some people have other disabilities that change their brain. Other people don’t have disabilities that change their brain.
That’s fine. No brain is better than any other brain.

Autism is a disability, and disability is a normal part of being a human. You can learn more about disability in Chapter 5. That chapter can help you understand disability and be a better ally.

Autistic people are part of the disability rights movement. We have a right to be ourselves, and to be in the same world as everyone else. Being an ally means helping us fight for our rights.

Here are some things everyone can do to be an ally to autistic people:

Learn about autism from autistic people.

Autistic people know the most about autism, since we know what it is like to be autistic. Non-autistic people will never know what it is like to be autistic, so they should learn about autism by talking to us. Ask autistic people first when you have questions about autism.

Here are some places where autistic people talk about autism:

  • The Autistic Self Advocacy Network
  • The Autistic Women and Nonbinary Network
  • The Thinking Person’s Guide to Autism
  • #AskingAutistics on social media. People add #AskingAutistics to their posts to ask autistic people questions.

Respect our privacy.

Autistic people have a right to privacy. We should be able to choose what people know about us. We should have control over what pictures and videos are shared of us. We should have control over the stories people tell about us. We should get to decide what things about us get shared and what things about us are private.

A lot of parents take pictures of their kids. This can be a good thing, but some parents take pictures of their kids doing private things.They may take pictures of their kid in the bath, or having a meltdown. Then, they share the pictures with everyone on the internet. Autistic people deserve privacy, even when we are kids. We need even more privacy when we’re having a hard time.

Sometimes, autistic people will teach others about autism.We might share private things about our lives to help people learn. That doesn’t mean we want to share those things all the time, or share these things with everyone. Don’t repeat private things an autistic person tells you, and ask first if you want to share our story with someone else.

Autistic people also have a right not to share private things. Autistic people talk about autism all the time, and some people ask us private questions about our lives.We have a right to not answer these questions. We should still get to talk about autism.We shouldn’t have to share when we were toilet trained, when we were diagnosed, or whether or not we hurt ourselves.We get to decide what we want to share.

Autistic people you are close to might tell you private things. This is a normal part of being family or friends.You shouldn’t tell other people about things we say in private. The rules are the same for us as when a non-autistic person tells you a secret.

Respect our bodies.

Autistic people have a right to control our own bodies. A lot of times, people don’t respect this right. They might touch us without asking, try to change how we move, or do things to our bodies that we don’t like. A big part of being an ally is respecting our rights, and that means making sure we are in charge of our bodies.

One way to respect our bodies is to let us stim. If you don’t know what stimming is, go to Chapter 3. All people stim, but when autistic people stim, some people try to stop us. This is wrong. Stimming is a big part of our lives, and allies should make sure we can keep stimming.

Respect our communication.

Everyone communicates in different ways, and allies help us find ways to communicate.

Some autistic people talk, and others don’t. Some autistic people talk differently than non-autistic people. Some of us use AAC. If you don’t know what AAC is, go to Chapter 3.

Some people use AAC all the time, while others go back and forth between AAC and talking.

Some people repeat things they’ve heard before, or talk for a long time. Some people use words that don’t seem to make sense, or show what they think by how they act.

No matter how we communicate, we all have something to say. Being an ally means listening to us, and taking what we say seriously. It means making sure other people listen to us.

Believe in us.

Autistic people learn, think, feel, and grow, just like all people do. Sometimes, other people forget that we are people. This happens a lot to non-speaking people and people with intellectual disabilities. Other people say that we can’t learn, think, feel, or grow. This is wrong!

An ally remembers that we are people. An ally knows that we have thoughts, that we are listening, and that we can learn. An ally works hard to communicate with us. They help us find ways to show what we think and learn, and how we feel.

Believing in us means making sure we get to make choices. It means giving us lots of chances to do different things. It means treating us the way other people our age are treated. It means letting us do things in the way that works best for us.

Believing in us also means giving us the support we need. All of us have things we need help with. Allies believe we can live good lives with the right help, and they help us get the support we need to live good lives.

Believing us means taking us seriously when we ask for help. Sometimes, it might not look like we need help, but we still do. For example:

Chauncey is autistic. He is in middle school. He falls on some stairs and hurts his leg. He goes to the school nurse and says “My leg hurts.” Chauncey isn’t frowning or crying, so the nurse says to Chauncey, “You don’t look like you’re in pain.” The nurse doesn’t help Chauncey, but later, his parents figure out that Chauncey broke his leg. The nurse should have believed Chauncey

Don’t assume things about autistic people.

Every day, we assume things about other people. We look at how other people act, and then we judge them. For example, someone might not make eye contact, so we assume they are lying. Someone might be frowning, so we assume they are upset. Someone might put their head on the table, so we assume they are tired. Someone might face away from us when we are talking, so we assume they aren’t listening.

But people do things for lots of different reasons. If someone doesn’t make eye contact, they might not like eye contact, or they could be blind. If someone is frowning, that might just be how their face looks, or they might be happy, but not be able to smile. If someone puts their head on the table, they might be dizzy, or they might not have strong neck muscles. If someone faces away from us when we are talking, they might be shy, or they might focus better if they aren’t looking at you.

Non-autistic people assume things about us from how we act, and that’s a big problem! Autistic people experience the world differently than other people, and that means we might act differently than others. Or, we might do the same thing as other people, but for different reasons.

Everyone has reasons for doing what they do, so don’t assume all those reasons are the same for everyone. You might not trust someone because they don’t make eye contact. You might get mad at someone for frowning when they should be happy. These things happen to autistic people all the time. They don’t happen because people are trying to be mean to us, but they happen because people assume things about us.

An ally tries not to assume things. Try to notice when you assume things about people. If you see someone talking to themselves, what do you think? If you see someone stimming, what do you think? If you see someone having a meltdown, what do you think? This can help you assume things less.

There’s only one way to know why someone acts how they do, and that way is to ask them! Ask us if you aren’t sure why we do certain things.

Talk about autism respectfully.

The way we talk about autism matters, and using different words changes how other people treat us. An ally is careful to talk about autism respectfully. They pay attention to their words.

Talking about autism respectfully isn’t just about using the right words, but there are still some words that are important to say or not say. There are also some ideas that help us and some that hurt us. Here are some tips for how to talk about autism respectfully.

Ask autistic people how we want you to talk about us. Ask us if we want to be called “autistic” or “someone with autism.”

Don’t use pictures of puzzle pieces to mean autism. Some people think that autism is a big mystery, and see autistic people as puzzles that need to be solved. So, they started using puzzle pieces to mean autism.

Someone did a study about autism and puzzle pieces. They talked to people about autism, then showed people puzzle pieces to mean autism. Then they asked people what they thought about autism, and found out the puzzle pieces made people think autism is bad. Autistic people don’t like it when people use puzzle pieces to mean autism because we are people, not puzzles.

Sometimes, people will say that someone is “low-functioning”, “high-functioning”, has “severe autism”, or “mild autism”. These words aren’t helpful, and you shouldn’t do this. We talk more about why you shouldn’t say these words in Chapter 1. Instead, just say what you mean. If you mean that someone is non-speaking, say that. If you mean that someone has an intellectual disability, say that. If you mean that someone has certain support needs, say that.

Never say that anyone is “retarded” or a “retard.” This word gets used to hurt people with intellectual disabilities, and you should never say this word to anyone.

Some people say that “everyone’s a little bit autistic.” because some things that autistic people do are things that everyone does. For example, everyone stims, but stimming is more important for autistic people. Saying “everyone’s a little bit autistic” can hurt us because people use it to say autism isn’t really a disability. That means people might not help us get what we need. It’s okay to talk about things that everyone does, but don’t say “everyone’s a little bit autistic”.

An ally makes sure their words don’t make autism seem bad or sad, and their words don’t make autistic people seem broken or scary. That’s already what a lot of people think about autism, and an ally’s job is to change how other people think about autism.

An ally always remembers that autistic people can hear them. When you say bad things about autism, it hurts us. An ally talks about autism like there is an autistic person standing right behind them.

Partner with autistic people.

Autistic people work in every job you can think of. We are scientists, researchers, writers, artists, and dancers. Wherever you go, there are autistic people, and no matter what job you do, autistic people do that job, too.

Remember the motto “Nothing about us, without us!” If an ally works on projects about autism, they make sure they work with autistic people on these projects. Autistic people should always be a part of projects about autism. It does not matter what kind of project it is, since autistic people will always have important ideas to add.

It’s not enough to just have us there when you do your project. You need to listen to us, make sure we understand what you are doing, and give us time to share our thoughts. You need to take our thoughts seriously, and change parts of your project that might hurt us.

An ally works with autistic people at every step of the project. An ally asks autistic people to help plan the project, and gives us chances to share ideas while the project happens. Don’t wait until your project is finished to ask us what we think. It’s too late to change anything if you wait until the end, so you wouldn’t really be listening to us.

Here is an example of a good project:

Camila is writing a book. Her book has an autistic person in it. Camila talks to autistic people about her book, and lets autistic people read the book before anyone else. Autistic people tell her that parts of the book make autism seem like a bad thing. Camila changes those parts of the book, and pays the autistic people for helping her.

Here is an example of a bad project:

Mario is autistic, and he is a well-known self-advocate in his town. Isaac is non-autistic, and he is planning an autism conference. He gets a group of people to help him plan the conference, but all of the people are non-autistic, except for Mario. Mario tries to make sure the conference is good for autistic people, but Isaac doesn’t listen to Mario.

The conference ends up being bad for autistic people, but Isaac thinks the conference was fine. When some autistic people try to tell Isaac that it was bad, Isaac says, “Mario helped plan the conference. It isn’t my fault you didn’t like it!”