If you follow me on Twitter, you’ve likely been hit with a swarm of anti-Autism Speaks tweets, whether they were retweets or actually my own.
I’m autistic—an Aspie—and I used to not talk about it. Now, I do, and I feel better for it. I’m not ashamed. I don’t want a fucking cure.
The Autistic Hedgehog meme may seem a little harsh, but it’s spot-on, and I’ll tell you why. I blogged about this over on Crunchy Family, my cousin’s blog, because of the mommies I wanted to reach out to, and I decided to talk about it here, because it’s extremely important.
If you support Autism Speaks to support autistics, you’re not supporting autistics. Autism Speaks doesn’t speak for autistics—they don’t even listen to us, contrary to one of their slogans—and they’ve been trying to silence us for the last few days.
Autism Speaks does not make autistics’ lives easier.
If you’re a parent of an autistic/autistics, and you wish to make life easier on them, by supporting Autism Speaks, you’re providing the funds to make your children’s future a worse hell than it is. It isn’t about you or your family as a whole, but those who are autistic themselves. It is not “our autism” unless you are actually an autistic person. It’s not about what your children will never be able to do.
It’s about what they will be able to do. They need love, encouragement and strength. I’m aware it’s mean, and I do feel slightly and horrendously monstrous for feeling this way, but I feel sorry for children whose parents, families and friends support Autism Speaks and truly believe they’re helping make a difference in the world by standing by the organization that actually makes the lives of autistics miserable. My heart breaks for children whose parents selfishly want to fund a cure for autism because they were raised on the belief that everyone should act the same.
This battle is such an important one, because it could very well be the key to making the world stop listening to Autism Speaks and start listening to actual autistics. We need allistic allies who will stand with us against Autism Speaks, because they’re still silencing us—parents are still being scared into deep, dark holes about how horrendous autism is, but it’s so, so wrong.
Why would you put your child through any Autism Speaks lab that is looking for a cure, especially when they supported the Judge Rotenberg Center? They’re just kids, and it breaks my heart. If you don’t see it the same way, picture this:
Many non-cruelty-free nail polish companies test their nail polishes on the eyes on rabbits, because their eyes are about as sensitive as humans’ fingernails—all whilst the rabbits are alive. They also test fingernail polish remover on their eyes in order to determine whether it will work or if it will be too toxic for humans.
As a result, rabbits wind up worse than they were to begin with.[1. I am a former Assistant Secretary for the GAP Club (the Girls Awareness Program is a nonprofit organization at Trinity High School in Euless, TX that stands up for human and animal rights) and, as a result, learned about the unfortunate, monstrous cruelties animals suffer during animal testing. It’s a little known fact, but I am for cruelty-free tactics.]
Like rabbits, children don’t have the ability to speak for themselves—to tell people not to experiment on them. They don’t have the ability to tell scientists, “Hey, I don’t like life-sized mazes that give cheese as rewards, because they’re scary and intimidating, and they just make me want to cry.” Rabbits have cruelty-free activists standing up for them. Children need their parents to stand up for them; autistic activists and our allies stand up not only for autistics ourselves, but for those who do not have the tools or resources to stand up for themselves.
If your children can’t stand up for themselves, it’s your responsibility to listen to actually autistic people and to stand with them rather than standing up for a hate group that has never had an autistic on their board.
To the pro-Autism Speaks parents of autistics who believe we’re strong and “able” enough to have this debate and boycott Autism Speaks: You don’t know the half of it. A lot of us are having panic attacks and stimming just to stay calm whilst we continue to be kicked to the side by this organization and other pro-A$ parents. Not all of us can coherently express how we feel. I probably failed in my Crunchy Family post toward the end, because I tend to get carried away and excited, thus my thoughts tend to collide, and I’m left with a volcano eruption as a blog post.
Actual autistics are taking time out of their special interests/fixations to fight this war so we can have a better life—so autistic children can have a better life. For the past four days, I have lived, slept, eaten and breathed this #BoycottAutismSpeaks battle. I’m exhausted. It’s a battle that shouldn’t exist to begin with. I have been called names, blocked, and sent extremely mean emails by parents of autistics.
I don’t always remember to brush my teeth or shower. I keep my tennis shoes tied when I take them off, because I don’t always remember how to tie my shoes—bless the friend in middle school who always had my back and would help me out on the days I couldn’t remember how to tie my shoes.
The bad days I have where I’m too stim-y, can’t act “normal” and can’t tolerate any neurotypicals are the days no one ever sees unless they just absolutely have to. They’re the days I rarely blog about, because it’s the side of me I don’t want people to see—the side of me I can’t control. You think you’ve seen my worst days? You’ve never read about, and probably never will read about, the days I have complete meltdowns where I resemble a child throwing a fit over not getting anything at a candy store. You’ll never see those days as long as I have control over it.
I can barely make phone calls to the doctor’s office when I’m sick, so I’d rather not go in. I know minimal American Sign Language, and it’s helped in the past when and where I was nonverbal. Just because I’m verbal today doesn’t mean I’ll be verbal tomorrow. Just because you catch me on the days I can form coherent thoughts doesn’t mean I’m always going to form coherent thoughts. Just because I’m not currently harming myself doesn’t mean I’m not going to harm myself in the future. Just because I’ve kept a blog for all this time doesn’t mean I’m super great at keeping up with it. Because I have a hard time commenting back regularly, I’ve actually lost a lot of blog friends in the five consecutive years I’ve been blogging.
But this doesn’t make me any “less” autistic, nor should it make me any “more” autistic. I’m not any more of a puzzle to solve than that of a neurotypical, and I’m so sick and tired of being treated like one.
I’m a human being. Autism Speaks doesn’t spread autism acceptance—it spreads ignorance, misinformation and fear.
Please—I beg of you—don’t buy Lindt’s Gold Bunny chocolates this year, because you’ll only be supporting Autism Speaks. Go for something else—anything else! If you can’t, just ask yourself, “Is me harming children worth it?”
You can’t support Autism Speaks and support autism, because Autism Speaks wants to eradicate us—not help or accept us. They hate us; it’s why they don’t listen to us. They reel families in with their gifts of iPads and fear, and other bribes, and all they care about is getting rid of us and autism, and you can’t get rid of autism without getting rid of autistics.
‘Cause, ya know, I don’t always explain myself well. Some are also from mommies, so if that tells you anything…
- Dr. House, episode 3×04
- “They Don’t Want an Autism Cure”, The Daily Beast
- “Autistic People Spark Fight Against Autism Speaks”, BuzzFeed
- “What’s Wrong With Autism Speaks?”, Emma’s Hope Book
- Autistic Wiki
- Boycott Autism Speaks
- “Here Are 10 Great Autism Spectrum Quotes”, Psychology Today
- “Mother of Autistic Children, Not Autism Mom”, Raising Rebel Souls
- “Reclaiming Our Autistic Children #BoycottAutismSpeaks”, Raising Rebel Souls
- “Is Autism Speaks a Hate Group?”, Autism Women’s Network
- “The puzzle piece—symbol for autism?”, (autism) comics by suburp
- “The Conflict Between the Autistic Community and Autism Speaks”, Susan J. Golubock (PDF)
- “Don’t Mourn for Us”, Jim Sinclair
In light of this, I’ve also decided to change my resources page from listening blog resourcing to listing autism resources. This will, of course, take some time, so please bear with me. :3
#AutismSpeaks10 years of ripping off autistics. This tweet is a ripoff of Jim Sinclair’s quote:
“When you’ve met one autistic, you’ve met one autistic.” —Jim Sinclair
If you loved this post, please share or buy me a pretzel:
This is a very interesting & new controversy I haven’t heard of before. The only controversy I’ve really read about is the vaccination bollocks made popular by Jenny McCarthy, with sadly…Oprah, because she gave her the soap box. The fear of autism was so terrible that parents continually refuse to give their children vaccinations…because autism is obviously way worse than causing a bunch of measles outbreaks, CLEARLY. Ridiculous. /end sarcasm.
Anyway, I personally don’t see the problem with extensive research into autism. Einstein was autistic & just like you, sometimes he’d forget to shower. He didn’t think in words or thoughts, but thought in pictures. However, there are a lot of autistics who aren’t all savants or high-functioning & I believe that further research into helping autistics be able to function, to remember how to tie their shoes, to prevent tantrums would be something much appreciated. I’ve read a lot of stories parents of autistics (& I mean really really really troubled kids that can’t be placated, constantly in pain, constantly screaming) who are just so depressed, full of resentment, & also love. It’s hard, for both parents & children. I think we should be open to the idea of being able to help people cope. I’m not saying everyone should behave a certain way – obviously without autistics, we wouldn’t have a lot of the technology we have today, but for those sudden outbursts or days when you just can’t be high-functioning, there should be a cure for those days, but not for your brilliant & different brain.
This is a topic that hits close to home for you, so I’ll go ahead & ask you something to clarify because often when we write things down to explain how we feel, we forget that others may have no idea wtf we’re talking about.
So here’s my question:
What is it that the autism community are trying to express to Autistic Speaks that they’ve completely ignored? What is it that they’re ignoring?
It is pretty awful to just subject people to testing without their consent. Finding a cure for autism is a pretty lofty goal…although its (autism) occurrence is more often genetic than by environmental factors, there’s a very large spectrum in which people fall under. It’s not like you’re either good or bad autistic, there’s a whole range. It’s frightening that anyone wants to cure it altogether. Some of the most brilliant minds were completely socially inept, but they discovered great things due to autism. We need neurodiversity. We should indeed be more accepting of those who are autistic than judgmental or in fear.
Autism Speaks claims to speak for autistics—they don’t, and they don’t listen to us. The links I linked to—especially the PDF and the one by Amy Sequenzia—are thorough on the controversy. The “high-functioning” label was actually coined by Autism Speaks and is one of their ableism slurs—they don’t mind the high-functioning, because they’re closer to “normal”. However, Autism Speaks sees the “low-functioning” as burdens or tragedies, and they reach out to parents and explain to the world that children should be seen that way.
Autism Speaks wholeheartedly wants to eradicate us and supports eugenics through that. They have made the idea that autism is a disease to the point that parents believe they need to have the ability to determine whether their child is going to be autistic or not—so they can abort it, much like many parents having babies with Downs Syndrome do—because they want a “normal” child, though the procedure is dangerous. Yet, doctors is support of this advertise it using “because they will be a burden”. The Judge Rotenberg Center used electric shocks as an “aversive”; Autism Speaks aligned themselves with them and supports it. The video is hard to watch.
Heather does a good job articulating what I can’t in her post to reclaim her autistic children, especially when she says, “Why was I afraid upon learning that my children were Autistic? Short and not sweet at all; we live in an ableist society and I was ableist too. Like most privileged people, I was not even aware of the concept of ableism, the reality of it. Our society dehumanizes the disabled. Our society refuses to accommodate and include the disabled. Our society fears, pities, and even hates the disabled. I was afraid because the idea that I would have disabled children never occurred to me. That only happened to ‘other’ people. I thought that having Autistic children was some how less than having non-Autistic children, that our lives would be less. I was so entrenched in the shallow, selfish, and privileged values our society taught me that I could not understand the source of my fear was my own acceptance of those values. I accepted ableism and that made it impossible for me to accept my children,” and even more so when she says, ”
Parents of Autistic children, do you share the values of Autism Speaks, or do you value your children? … There are some that view Autism Speaks as a parent support organization, justifying it’s existence even though it does nothing to help Autistic people, but I protest that. It is not assisting parents to strengthen our fear, ignorance, and ableism. It does not comfort us to think of our child as lost. It does not improve the quality of our lives to focus our energies into the absurd notion of curing a neurological variant. It does not elevate our ability to parent to run us through the therapy wringer so that our children can someday be indistinguishable from their peers. It does not build us up to describe our relationships as strained and broken because of Autism. It does not help us to shout to our government that we are merely existing, not living. It does not advance us to be manipulated into earning money with walks and fundraisers in order to perpetuate their cycle of destruction. Autism Speaks does not support parents in raising healthy and happy Autistic children.”
I don’t disagree that autism research is great, but we don’t need it by Autism Speaks. They have the money and the celebrity endorsements, thus the resources, to make the world think a cure needs to happen, so that when they do eventually find a “cure” for autism, they will literally be able to shut us up completely—to eradicate us and require everyone take this cure, because they have that kind of power. They don’t listen to us, so no one else does. They don’t want autistics to exist; they “help” parents and get them by scaring them, because they want to take us out. Not one single person on their board is autistic; the only autistic member high enough in leadership to be worth mentioning is John Elder Robinson, who explained why he resigned on his blog.
Autism Speaks’ “I Am Autism” commercial aired first in 2009 and continues to air today.
Again, I can’t really explain well why people shouldn’t support Autism Speaks, so I put in links to do it better for me. 😡
But supporting autistics, autism, and autism acceptance cannot be done by supporting Autism Speaks. We have the ASAN.
There’s also a masterpost with better-described information and links explaining much of what Autism Speaks has done, stands for, and believes in.
Autistics and allistics can coexist, but autistics need to first be accepted into society completely—then, and only then, will the functioning labels become redundant and people stop focusing on what we can’t do.
I hope this helps.<3