What Autistic Advocacy Really Means

TW – ableism, eugenics, “treatments”, torture, Judge Rotenberg Center, Spectrum 10K

You may have recently heard about the Spectrum 10K study and have seen autistic people’s, and non-autistic people’s, concerns about the study. Though I have plenty to say regarding this study, that’s not what I want to talk about right now. 

What I want to talk about is the lasting effects that occur when autistic people are used as a commodity, a political football, a theoretical argument, as exploitation, when autistic people have to witness the dehumanization and legal torture of autistic people.

A study like Spectrum 10K brings out non-autistic people – parents of autistic people, teachers of autistic students, and many disability-adjacent “professionals” – who genuinely think it would be better if they aborted autistic fetuses in the future so that they didn’t “suffer.”

Although these interactions are upsetting, the worst part is when being autistic is used against us. No matter the autistic person’s expertise, experience, or educational background, being openly autistic means consistently being de-legitimised by random people on the internet.

Have experience in education? Doesn’t matter, you’re just an “autistic advocate.” Have experience as a researcher, even in something like genetics? Doesn’t matter, you’re just an “autistic advocate.”

Autistic people are constantly put into a reductive box of “advocate” instead of human being who has value and deserves to exist. We don’t just exist on a screen. And if you wonder, “why are there so many autistic people on twitter and social media? Why don’t we see them out in public?”

Because in public, this is what we get told:

“Oh wow, I never thought you had autism!”
“Oh wow, you must be really high-functioning!”
“Well everyone’s a little bit autistic.”
Or people start talking slower, staring,
Looking at your family members or partner to respond,
Or ignoring your opinions entirely,
And more.

And when we say we’re autistic online? No matter who we are, we are reduced to “advocate.”

I’m tired of being reduced.

Many of the autistic people I know are tired of it.

I’m tired of non-autistic people saying “you’re think in black and white because you’re autistic so this must be hard for you to understand” or “you don’t understand because you lack theory of mind.” 

It’s funny that non-autistic people constantly tell us that autism “shouldn’t define us” but when we talk about ourselves as human beings, when we have legitimate critiques and concerns, we are suddenly reduced to merely “autistic advocates.”

The Long-term Effects

I’d like to talk about how these events like this impact autistic lives.

It’s not just a blip in our lives. It’s not a phase. We’re advocating for ourselves and for future autistic people to be treated as human beings and supported throughout their lives. 

It is heartbreaking to know that autistic people are being legally electrically shocked when they don’t take their coat off fast enough, when they wipe cream cheese off a piano and staff assumes it is a “repetitive behavior” (which is a natural autistic regulation strategy), when autistic teenager’s brains are literally being lesioned through procedures done to patients with cancerous brain tumors in the name of “treating” autism, and when researchers claim to be “anti-eugenics” while one of the co-investigators of the study 3 months ago called autism a disease and said it needs to be “treated.”

Although this may be a career for non-autistic people, for non-autistic researchers, for non-autistic people who want a non-minimum-wage job and “experience with autism” after high school before they go into speech and language therapy school, for ABA therapists, for teachers, for torturers, all we can think about is the autistic lives that hang in the balance.

So Much Gaslighting

And what we often have to contend with when we speak up about any of this is gaslighting from non-autistic people, being told we “just don’t understand,” being told it’s “not a big deal,” being told we are being too “political,” being told that “it’s just a few people that have issues, and they probably don’t even have autism, they’re just saying that.”  I got told on twitter just a few days ago, from an account that supposedly “supports autistic people” regarding Spectrum 10K, that it’s “just a bit of DNA” and I shouldn’t be so stressed out and concerned about all of this. 

We have to argue with people who think eugenics is a good thing, who think it would be better off if autistic people didn’t exist. Seeing no non-autistic people step in and help in these situations is exhausting, and these situations sometimes become traumatizing. 

We know that non-autistic people are going to go on with their lives, ironically while continuing to benefit from the existence of our lives.

That’s not to say there aren’t allies to autistic people – there are. But they often don’t speak up by themselves. We must coax them out by “being professional” and giving them a “pathway” to help. We can’t expect them to simply speak out for us due to the injustice that autistic people face. 

We always have to do the work. 

We’ve seen that if we don’t do it, time and time again, then no one will.

And We are Exhausted.

The Consequences

These “events” – Spectrum 10K, the Judge Rotenberg Center (still ongoing), Color the Spectrum involving the nonresponsive Next for Autism (ongoing whether they follow through with their promises), we don’t just magically recover from them.

Autistic people have lives – many autistic people have autistic children themselves. Autistic people have to make a living as well, and many struggle to do so. Autistic people are carers for their family members who have other disabilities as well, or have a partner who is disabled and they care for each other. Autistic people deal with tragedies just like anyone else.

And I have seen all of these autistic people work tirelessly to help ensure a future for future autistic people. I often feel guilty because I am very privileged. I am (relatively) financially secure, while many (most) fellow autistic people I know who do this are not. I don’t have as many family obligations, I don’t need to care for family members, and I am not nearly in as much constant stress as other autistic people who have things going on in their lives.

The Mental

And yet, somehow I still feel terrible for weeks after advocating like this. I feel defeated (even after the “win” that occurred with Spectrum 10K today). I feel hopeless. And honestly, yea I do feel a bit traumatized after hearing researchers (especially as a fellow researcher) call me a disease, after hearing what a  “burden” we are on society, after seeing a teacher of autistic children say that autistic kids should be aborted. I think many of us are traumatized. 

I cried explaining this to someone yesterday – How I’m pushing to get my PhD this semester, working hard for it, and all I can think is “It doesn’t matter because once I say I’m autistic, no one will care. No one will care what I have to say, what I think.” Being autistic, saying I am autistic, means everything about me doesn’t matter to a non-autistic person, especially when it comes to things that are about being autistic. It’s infuriating. It’s baffling. It hurts. It makes me want to cry again writing this.

Seeing Simon Baron-Cohen dismiss our concerns, saying “Is the autism community saying no genetic research should ever happen?” when we (many, many people, not just me) spent hours and hours writing something to explain the issues in great detail, and that was never one of them. 

When non-autistic people, even researchers, thank us for making a clear path forward to action because before they simply didn’t know what to do, or couldn’t agree with us, as if it’s our obligation for them to be our allies. As if we must earn allyship. We can’t expect them to just do something about it. Not unless we do something first.

I, and many other autistic people, have been “on-call” the last few weeks. This happens everytime there’s something that we need to speak up against. Waiting for the next statement, seeing if there’s more information, answering general questions and explaining to people what’s going on. 

The Physical

When I’m exhausted and stressed out, I don’t eat “real food.” I’ve had non-dinners for 3 nights in a row because my appetite’s gone or I don’t have the energy to get up and make food. A lot of times these events don’t just affect us mentally, it affects us physically too. I’m more likely to cry or be on edge because I didn’t eat much. I didn’t eat much because I’m tired and stressed. Not eating creates more stress. 

My heart rate was 130-150 bpm during the Color the Spectrum event. I went to a doctor about it after 4 days in a row. It was like that for at least 7 days consistently. I still don’t really know why – maybe stress? It’s not like we understand the health effects of autistic people from stress, of course.

Conclusion

And the only true apologies I’ve seen are from burnt out autistic people, to other burnt out autistic people. “I’m sorry I can’t do this right now, I have [absurdly extraneous circumstances here] going on.” 

I’ve thought about writing a blog post about Spectrum 10K, about all of the issues. But the statement that was created lays everything out in a very straightforward way.

And honestly, we shouldn’t need to say it again.

All of the events I have listed, run by non-autistic people, have been in the name of “helping” autistic people. 

I would like to ask for non-autistic people to start actually helping. I know we have allies, but we don’t just need allies. We need outspoken allies. We need a buffer to the trauma. We need a break. 

I don’t want to be writing this post right now. Honestly, I probably shouldn’t be. I probably should be watching TV to turn my brain off or sleeping. But instead, I’m doing this. I shouldn’t have to write this post to ask non-autistic people to start speaking up (or to speak up more) when autistic people are getting harmed.

I’m tired. We’re tired. Something has got to give so autistic people can get some rest when fighting for justice. 

Consider 30 minutes a week of activism, or speaking up and platforming autistic voices, if your livelihood is benefited by autistic lives.

Because current and future autistic lives are on the line, whether you feel that way or not.

5 Replies to “What Autistic Advocacy Really Means”

  1. You are a human being to me, I care about you. I want you to get your PhD. I am the mother and grandmother of an autistic son and grandson. I love them both and accept them as they are.
    I am appalled at the idea that people want to abort autistic babies. What next? I have spoken up about autism before and will do it again.
    I am sorry you are so traumatised, I am sending you love and light, fellow human being. 👩‍🦰❤

    Liked by 1 person

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