Chapter 6

Self-advocacy and the self-advocacy movement

Autistic people have been standing up for ourselves forever, in lots of different ways.

This is called “self-advocacy”. Self-advocacy means standing up for yourself so you get what you need.

This chapter will talk about these things:

  • What self-advocacy is
  • Who can be a self-advocate
  • What the self-advocacy movement is
  • How to be a self-advocate

What is self-advocacy?

Self-advocacy means a lot of things. It means standing up for yourself, taking control over your own life, and fighting for your right to live how you want to live. We self-advocate in ways that are both big and small.

For example:

Milo is an autistic high school student. They live in the United States. Their school has meetings to talk about what Milo needs. Milo’s teachers and parents go to these meetings, and so does Milo. They speak up if they want a new kind of help, or if they disagree with their teachers or parents. This is one kind of self-advocacy!

Self-advocacy doesn’t always look like that, though. There is no one “right” way to be a self-advocate. Here are some other kinds of self-advocacy:

  • Saying “No!”
  • Asking for help
  • Telling someone to leave you alone
  • Deciding what you want to do today
  • Talking to other people about your disability

Self-advocacy can be something that you do by yourself, or with other disabled people.

Self-advocacy isn’t just speaking up for yourself. It can also mean speaking up for your whole community. The self-advocacy movement is when we all speak up together. The self-advocacy movement is part of the disability rights movement, where people with intellectual and developmental disabilities fight for our rights.

The self-advocacy movement

In the 1960s, Swedish people with intellectual disabilities got together. They formed their own clubs, where they talked about how they wanted to be treated. Then, the clubs told the world how they wanted to be treated.

This idea spread to other countries! Disabled people got together, and told others what we wanted and needed. We wanted to live at home in our communities, and we wanted to go to school and work with everyone else.

The self-advocacy movement grew and grew. Disabled people started running disability groups.

We closed a lot of institutions, wrote books about being disabled, and made laws to help disabled people live better lives. We changed the world!

We still have a long way to go, since disabled people still get treated unfairly. We can’t always choose where we live or what help we get. We don’t always have the right to vote. We might not get to choose how we want to spend our money, or have control over who cares for us. But we are still fighting for our rights.

A motto of the self-advocacy movement is “Nothing About Us, Without Us!”. Lots of people talk about us without letting us talk. We should always be part of the conversation, and be in charge of our lives.

Who can be a self-advocate?

Anyone can be a self-advocate! If you are autistic, you are already a self-advocate.

You don’t need to change laws to self-advocate. You can start small. You can practice standing up for yourself, and talking about things that are important to you. That is self-advocacy.

No one is too disabled to be a self-advocate. To be a self-advocate, you only need 2 things. You need to know what you want, and you need a way to show people what you want. That’s it!

For example:

Juanita doesn’t talk or write, and she needs a helper. If she likes something, she tells her helper by humming. If she doesn’t like something, she bites her hands. The people around Juanita pay attention to what she likes and doesn’t like. If she doesn’t like a helper, her family fires them. Juanita is a self-advocate.

How can I self-advocate?

All you need to practice self-advocacy is yourself. No one needs to tell you what to do, and you don’t need to start at a certain time. It is up to you!

You might not be sure where to start. Here’s what self-advocacy might look like for you:

Saying “No!”

You can tell others what you are okay with and not okay with. You can say “No” when someone does something you aren’t okay with, or use other ways to show that something isn’t okay.

For example, if someone tries to touch you, you can say “Don’t touch me.” or say “No!”. You could also just move away from that person.

Sometimes, you’ll be okay with something one day, then not be okay with it later. It is okay to change your mind, and to say “No!” even if you said “Yes” before. How you feel is important, and other people should respect your feelings.

Talk to other people about yourself.

You can tell them about your disability, what you’re good at, and things you need help with.

Your wants and your needs matter. You might want to try a new hobby, stay up later at night, or study in a quiet place. You might need help with different parts of life, like getting a job or health care. Other people can help you meet your goals, and the more they know about you, the more they can help.

Getting help.

There is nothing wrong with asking for help. Your family and friends can help, or you can ask someone whose job is to help people. You can also get accommodations to help you. Accommodations are changes that make things easier for disabled people, and help us get the same things as non-disabled people. Accommodations can be used at school or work, or in public places like restaurants.

Accommodations can be useful for all sorts of things. For example, here are some accommodations at school:

  • Getting extra time on a test
  • Having a note-taker
  • Using AAC in class

Wanting or needing accommodations isn’t bad – it is normal. Non-disabled people have their needs met in most places, but disabled people don’t. That is why accommodations exist, so don’t be afraid to use them.

Use the things that work for you.

It is normal for things to be hard sometimes, but there are ways to make things easier. You can make your own accommodations. There are lots of tools autistic people use to make our lives easier, like:

  • Printing out schedules with pictures to plan out your day
  • Having a friend come over once a week to help you clean up
  • Setting up a phone or laptop to remind you to do things

You might feel pressured to communicate in certain ways. People might want you to talk out loud, or push you to talk faster. They might want you to talk in ways that they like. You should communicate however works best for you. You might find writing easier than talking, or find it easier to point to pictures or draw things. You should communicate in a way that you like. That’s self-advocacy!

Remember: self-advocacy is for everyone, and you are already a self-advocate. You can use some of these ideas to practice self-advocacy. The more you practice, the easier it will get.

Even when you self-advocate, people might be jerks, not listen to you, or treat you badly. When you think something is wrong, it can help to know your rights.

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