In the wake of Netflix’s Atypical series, the divide between the autistic and autism communities is stronger than ever.
Instead of ranting at full-speed about it, I’d like to use my time and space here to explain how an allistic (non-autistic) person can be an ally to autistic people during this time and moving forward.
How to be an ally to autistic people
1. Acknowledge your privilege as an allistic person—and know your place within the community.
You were born into a world dominated by allistic people. Sure, Einstein was anaylized to be autistic, along with many other historical figures, but much of society still sees autism as a bad thing. Regardless of whether you do, your privilege leads your opinion to be redundant in this case.
Allistics are part of the autism community, meaning you do not get to decide anything about the autistic community. If you’re not in a minority’s group (autistic community), you haven’t a say.
Relevant: You don’t get to say what a group of people needs unless you are part of that group.https://t.co/UySXeDlJwZ #ActuallyAutistic
— jane lively 🏳️🌈 (@iJaneLively) August 17, 2017
Even as I type this, I can understand how off-putting and shitty it sounds, but it’s true. Feel free to compare it to cis men having a say over cis women’s bodies, if it helps you visualize better your stance in the communities.
Stop flaunting the puzzle piece about to represent autism.
Unlearn what you were taught wrong about us.
2. Respect terminology used in the autistic community.
Stop calling yourself an “autism ____”.
There is nothing to fight except the divide. There should be no politics over whose life is superior/inferior to another’s, whether a minority community deserves to live/reproduce/etc.—the list goes on.
Calling yourself an “autism” anything as an allistic person takes attention from voices of minorities and puts the allistic people at the authority level.
An #ActuallyAutistic meme that you'll get if it concerns you. Otherwise not so much. pic.twitter.com/MR61bUFMdU
— Brendon Hope (@BrendonHope) January 1, 2017
The only autism experts, regardless of how much research has been done by an allistic person, are autistic people.
Autistics are the only genuine autism experts.
Autistic people are autism experts.
Non-autistic people are not autism experts—period.
Moreover, if an autistic person chooses identity-first language, respect it. Do not continue to use person-first language unless in regards to an autistic person who has explicitly told you to refer to them that way. When you continue to disrespect an autistic person’s language preference, it makes you look bad and is, essentially, talking over an autistic person—which is not ally behavior. Which brings me to this:
Do not speak over autistics; do not dismiss autistics.
Autistic Hoya wrote a great piece on what an ally isn’t.
Also: Don’t call yourself an ally. Don’t scream your allyhood from the rooftops—we’ll determine allies for ourselves, thank you. The best allies needn’t a label, however, or to be reassured.
3. Raise voices of minorities, and watch what you say.
Don’t focus the conversation back on you. Use your position in society to lift the voices of minorities.
- Post links to their blogs on social media
- Retweet their tweets
- Publicly and respectfully validate their thoughts and feelings without giving yours
- Don’t exploit your child during any it, tell us we’re not like your child (we are), and/or put your child down to prove a point
- Don’t pick fights with us; respect our thoughts and opinions in discussions regarding autism
Use your position to bring attention to members of the actually autistic community, because our voices are often buried and ignored.
I read the comments and discussions regarding autism on other sites; I’m similar to your kid—but all grown up. My mom kept a blog; she didn’t expect me to find it—didn’t think I would.
4. Support organizations that actually include autistic people in everything they do.
Organizations like Autism Speaks ignores and goes to extreme measures to avoid actually autistic people from sharing what we think about them. Many actually autistic bloggers and vloggers have been scared into silence to not talk, many actually autistic people have been blocked on Twitter for speaking out against their tweets (even when it wasn’t attack-like)—the list goes on.
Don’t support “autism mom/warrior/etc.” groups, but instead groups created by and for autistics.
If you want to go the extra mile, support actually autistic people. If you can’t shell out anything monetarily, again: raise their voices! Read blogs and articles written by autistic people instead.
As an allistic person, you have the power to do things we can only dream of right now. People listen to you, so help guide people to us.
5. Strive for acceptance, not “awareness”.
Awareness creates resistance. It’s what you do for cancer and things that are a danger to society, like serial killers.
Autism does not need awareness; autistic people need acceptance from non-autistic people.
6. Speak for us only if we permit you to.
If you’re speaking for your child, you should still be careful not to allow your voice more value over an actually autistic person.
This one, though, is more towards what your ultimate purpose should be:
It is not the job of autistic people to fight for/convince others of their rights, but for allistic people to remind the world of our humanity, too.
Fighting is exhausting. I can’t always do it, even if I feel like I need to. I shouldn’t feel this way. I shouldn’t feel like I’m not doing “enough” if I’m not pushing myself to tears advocating for myself and others, either.
Allies should raise our voices, because we cannot always do it, because we cannot always fight back, because we feel spent much more than we’d like.
Stand up for us by defending us. Stop hesitating in the wings. Sometimes all it takes is standing up to a fellow allistic person by saying, “You need to respect this #actuallyautistic person, because you are not part of their community. You do not personally experience what it is like. You need to stop invalidating autistic people and their experiences just because you find caring for autistic people a burden.”
It’s not perfect, but the idea I’m trying to make, I hope, is there.
It’s exhausting to fight for ourselves all the time. It hurts. Every time I post something about my autism here on my blog, I’m met with some kind of backlash over how someone from the autism community thinks I shouldn’t have a say because I don’t know what it’s like caring for someone like me—because I am the burden in their lives.
I shouldn’t have to prove my worth as a human to horrible fucking humans. I shouldn’t have to solve your “burden” issues just because I am a member of the community you deem a fucking burden.
I shouldn’t have to fight for myself when I’m feeling like I’m back in my old room in Forney, wrestled around on the floor by my mother for the torture of myself and entertainment of my stepfather.
You want to be an ally? If you’re not with us, you’re against us. You have to include us in everything you do in your autism activism, otherwise you bring harm to us.
How is that so hard to understand?
Need more tips? Here’s five from Everyday Feminism.
If you loved this post, please share or buy me a pretzel:
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Thank you, Jane, for this post. It touches a nerve (or two). I am with you. Tired of being overlooked. Tired of myself. But proud of myself too. Happy to be overlooked too (it takes the pressure off). I am me. I am me. I am allowed to be me.
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I try to avoid labels because I think people label everything and then expend so much language and time on explaining what they mean.
Interesting and thought provoking article, even for me who has spent 64 years as an HFA.
My motto: ‘I am as I am, accept me as I am’.
There is an addendum to my motto, which I tend to think rather than say: ‘If you cannot accept me as I am, then take a long run off a short pier’.
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Astronaut’s mom 😀 that one’s great. Good article. I would love to find out more about autism, cause it’s weird to realize I’ve known some autistic people, and yet I know next to nothing about autism, cause it can be so… diverse, different.
There’s also that whole thing where people somehow only associate autists with.. being kids. Autistic kids. But not autistic, high-functioning adults. Maybe unrelated to the article, but it just makes me wonder. Although wait – maybe it IS related, like how you talk about being considered only through the prism of being ‘a burden to someone’ – not for being you, but in your relation to someone else. Isn’t this the same? That society can’t think of autists as… adults, you know? Not someone’s kid, someone’s burden? Indeed you shouldn’t have to prove your worth. It’s sad.
Great article, again. Hope to see more articles like this, followed your blog. Nice to meet you, BTW.
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