What Autistic People Want You to Know About Autism

The world of autism awareness is more complex than you might realize. Too often, these campaigns exclude and alienate autistic people. When you talk about autism, how can you make them feel included? As I write, it’s autism acceptance day.* So let’s go over what autistic people want you to know.

There’s an autistic person in my family. I won’t say who it is because they don’t want me to. Instead, I’ll say that this is something important to me. I’ve read what autistic people have to say online. While I won’t speak for them, I can summarize what they’ve been saying.

Note: I say “autistic people” and not “people with autism.” That’s because over 80% of autistic people want to be called autistic people. After all, this whole article is about listening to them!

*April 2.

They See Themselves as Different, Not Broken

They Don’t Think They’re Inferior

Most autistic people don’t see themselves as helpless victims of their own DNA. Instead, they see themselves as different.

Imagine a world in which autism is common. Public places are quiet. Lying, blasting loud music in public, and touching strangers are major sins. Eye contact is rude. Loud sports cars and strobe lights don’t exist. At school, kids learn sign language and go to quiet rooms if they get upset.

If the world were built for autistics, then non-autistics would be disabled. They’d be called shallow, dishonest, pushy, and judgmental. When parents learn of a diagnosis, they might cry. They’d say “I don’t want my child to be like the lying pest down the street!” At work, they might seem annoying and unmotivated. That is, if the company didn’t let them go for talking too much.

It would be lonely, right? There’s nothing bad about being different, but society would tell you you’re in the wrong. To autistic people, that’s how life feels.

Instead of being broken, autistic people are trying to live in a non-autistic world. They’re supposed to tell white lies, tolerate sensory pain, manage complex social rules, and make eye contact when they don’t like it.

Society imposes these problems upon them. If we changed society, then life would be easier. It might even be better for non-autistics, too.

Autism Isn’t Only Negative

If you stop seeing non-autistic people as the ideal, then autism isn’t all bad. Repetitive fidgeting doesn’t hurt anyone. Nor does wearing headphones, being passionate, or making odd facial expressions.

Also, autism comes with positive traits. Autistic people tend to tell the truth and think differently. They notice details that others miss. If you want precision, an autistic person is likely to give you that.

Different thinking has good parts, too. Some autistic people are highly creative. Some are great at problem-solving. Their unique ideas can change things for the better.

Autistic people want you to know they aren’t broken. They’re different. Instead of isolation, they want acceptance.

They Want You to Let Them Be Autistic

I remember as a child spinning all the time and loving spinning and loving swinging and feeling that movement all the time, but then I also realised that there was a point where it wasn’t acceptable to be spinning anymore …

Sinead, quoted in a study about fidgeting and autism

Lots of “autistic behavior” helps autistic people feel better. For example, rocking back and forth can help them feel calm. Focusing on a narrow passion is fun and engaging. Lining up objects is like meditation.

But society tells them these things are wrong. Their instincts are unacceptable. Their feelings are weird.

What if we let people be different? We could stop judging them. If they flap their hands, who cares? We could ignore it and move on. We could even think it’s nice if they’re happy.

If there’s one thing I could tell everyone, it would be that. Autistic people aren’t being weird. They’re doing what’s right for them.

Make back to school easy with schedules, fidgets and sitting wedges from NationalAutismResources.com

They Don’t Want an Autism Cure

What about those who wear diapers or have seizures? How about those who cry every day or can’t bear to wear shoes?

In fact none of those things are autism. In order, they’re likely GI issues, epilepsy, mental illness, and sensory issues. Nobody is saying those are good. In fact, many autistic people would probably like those to be cured. If we cured these co-occurring problems, autistic people might be much happier. Without this stress, they could do more in life.

Autism is about 80% genetic. How do you destroy someone’s DNA? You don’t. Instead, getting rid of autism might mean selective abortion. It already happens to some fetuses with Down syndrome. Once they find the cause, autism could be next.

We get really concerned when we see all this money going into risk factors and causation and genetics as opposed to finding out why autistic people tend to have shorter lifespans, or why our suicide rate is nine times higher than average, or what autism really looks like in adults.

Julia Bascom, executive director of the Autistic Self-Advocacy Network

Instead of a cure, many autistic people want other kinds of help. For example, we could cure epilepsy, depression, and other problems. That would make life better for many autistic people. Also, the right therapy can make a difference. For example, sensory integration therapy or assertiveness training could help.

Autistic people do want help. They just don’t want to erase who they are.

Autism is Complex

Autistic people want you to know that autism isn’t simple. It’s not a straight line going from “barely autistic” to “unable to function.” Instead, it’s a group of traits.

Skill in one area doesn’t mean skill in all of them. For example, someone could be able to speak well but struggle to manage their home. Similarly, one area of inability doesn’t erase skills. For example, a nonspeaking autistic person could get married and be successful at work.

The labels “high-functioning” and “low-functioning” aren’t that helpful. In fact, they can do more harm than good. It treats people like they’re one-dimensional. But autistic people are human beings.

The World Isn’t Doing Enough For Them

Autistic people want you to know that they aren’t treated like equals.

Sadly, there’s lots of evidence for that claim. Exclusion can be the norm for autistic people. In fact, around 85% of autistic college grads are unemployed. They have high rates of depression and anxiety. Around 3 in 4 autistic children face bullying. Many autistic people face abuse inside or outside the home.

Also, there’s a huge disparity in diagnoses. Autistic girls tend to go undiagnosed. Meanwhile, autistic people of color don’t get diagnoses as quickly. This means they might be left wondering why they’re different. In the US, they may not be able to afford diagnosis at all.

This needs to change.

We need to stop treating autism like a monster. It’s not a disease or a nightmare. It’s a word for a group of people. They need us to listen and care. Until we do, the problems won’t stop.

What Else do Autistic People Want You to Know?

Of course, there’s much more to the story. I can’t fit everything in here. Otherwise, it would get way too long.

Instead, I’ll encourage you to read from autistic people. They can speak for themselves. And they have a lot to say. All they need is someone to hear them.

Why did I write this? Because I want people to understand the autistic person in my family. I want them to feel accepted and valued. So it’s not just autistic people who want you to know these things. I want you to know them, too.

Originally posted on Jenna’s blog

Make back to school easy with schedules, fidgets and sitting wedges from NationalAutismResources.com

For those who want a very in-depth look at raising autistic children and the many roadblocks parents face, I highly recommend you visit the website theautismdad.com and raising three boys on the #autism spectrum. A great handbook for parents can be found at this link: Parent’s Guide.