Why Autistics Don’t Trust Autism Speaks’ Rebranding

Yes, that’s a picture of a chocolate-covered onion. Yes, you can tell I’ve never tried drawing onions before.

In 2020, Autism Speaks announced that they’d add a spectrum of colors to their blue puzzle piece, unveiling a cheerful-looking new logo. They also said (via Tweet) that they’d use identity-first language for autism, the same language that most autistics prefer.

That’s good, right?

But autistics reacted with suspicion. For those who know the history of Autism Speaks, this is yet another example of superficial changes hiding an ugly reality.

An awful history

This section is not for the faint of heart.

Autism Speaks was founded with the mission of getting rid of autism. And their agenda was clearly shaped around the idea that autism was a monstrosity.

  • Their ads and messages compared autism to kidnapping, deadly diseases like cancer, and other disasters.
  • They pushed ABA therapy, an intensive punishment-and-reward program that trains autistic children to adopt “desirable” behaviors and extinguish “undesirable” ones, despite many reports of cruelty and trauma. (This includes the Judge Rotenberg Center, which tortures people with electric shocks.)
  • They pushed a narrative of martyr parents tortured by nightmare children.
A graphic showing quotes from Autism Speaks; they are not readable at this small size
Click if you want to read quotes by Autism Speaks about autism, though maybe you don’t

Let’s keep in mind that autism is a predominantly genetic condition that affects how someone thinks and experiences the world. So they are talking about stamping out something that is innate to a person. Even if that means child abuse or selective abortion.

And then, of course, there was all the anti-vaxxer ideology. Study after study commissioned, time after time, long after the evidence was clear that vaccines didn’t cause autism.

They do have a history of making superficial changes in the areas they’re most criticized, without actually changing their behavior.

Is this time any different?

They haven’t really changed

But now they have rainbow colors and identity-first language, right?

Well, at the same time, they have:

A graphic showing negative side effects of ABA therapy; the text is not readable at this small size
Potential side effects of Autism Speaks’ favorite therapy, according to ethics researchers
  • Continued with their negative ads (now more subtly)
    • One time is a bad photo. Many times is a sign.”
  • Spread a stigmatizing 100-day kit that encourages negative attitudes in parents, such as
    • Telling them to grieve
    • Saying they will want your child to “get better”
    • Telling them to be angry at autism
    • Encouraging them to try scientifically dubious treatments
  • Continued support for ABA, despite evidence of PTSD and abuse
  • Changed their financials so you can no longer see how much goes towards family services
  • Pushed for saccharine inspirational “kindness” with nothing to say about respect or human rights

Considering these facts, it’s probably not surprising that the logo change resulted in sarcasm and frustration on Twitter.

Appropriating the neurodiversity movement’s spectrum iconography is a slap in the face, especially since that imagery is used to differentiate ourselves from Autism Speaks.

Autistic parent and writer Steve Asbell

This wolf is trying on more sheep’s clothing. And they love it.

The most dangerous part is that on the surface, they look like a good organization. They seem to inspire optimism and hope. Their website looks trustworthy.

That’s how they lure people in.

I encourage people not to fall for it. There are other groups, like the Autistic Self-Advocacy Network and Autism Women & Nonbinary Network, that offer support instead chocolate-covered poison.

We need organizations that truly care about the well-being of autistic people of all ages. Autism Speaks continues to fail at that.

17 thoughts on “Why Autistics Don’t Trust Autism Speaks’ Rebranding

        1. I would say that someone has “gone too far” if they are hurting others. It saddens me when I see regular people being attacked online, especially if the person is well-meaning but just not educated.

          Personally, I don’t fight people. I fight concepts. I fight ableism and cruelty and discrimination, not individuals. And I look to see if individuals are willing to join me too. Lots of times, people want to be good and just might need a little guidance on how to do good things.

          Of course, this is my personal philosophy. When people say “f*ck Trump” or other confrontational things about individuals who hurt others without remorse, I see where they’re coming from and I respect how they feel.

          I think if someone is wishing harm on others, engaging in bullying tactics (like name-calling, public mocking, harassment) against someone who hasn’t even been given the opportunity to learn, or making the atmosphere toxic to people who aren’t trying to do harm, then they have gone too far. I get that it can be easy to get caught up in anger and frustration, especially in this unjust world that is cruel far too often. The important part is not to become cruel yourself.

          How far do I personally go? I write lots of blog posts and wikiHow articles. I draw accepting pictures and I write autism-friendly stories. I focus on creating positives, rather than fighting negatives, but that’s a decision made to protect my mental health and I admire those who fight negatives. I take breaks when needed. And I try to inspire the best in people. Based on the comments I get, it’s working, a little bit at a time.

          So those are my thoughts. I hope this answers some of what you’re looking for. Take care of yourself.

          Liked by 1 person

  1. I was actually fortunate that A$ wasn’t my first source. I learned about the controversy the same time I actually learned I was autistic even though I was diagnosed years before.(My parents hid that from me.) I thought I had to tell my classmates and about the Autism Speaks Controversy as well just in case if they wanted to participate in an autism event in the future. To prove my point I used their own documentary Autism Everyday to show all of Autism Speak’s sins. They got the message alright, but I think they ended up seeing it too much because I wanted everyone to know that Autism Speaks is bad. After that this girl from my class named Mary (Not her real name) who went to school with me for 5 years said she was having a sleepover with my only other classmate,Emma (Not her real name.) in ear shot and didn’t invite me. Being a class of just 3 students if you were to include me, I felt as if the classmate that I have grown so attached to didn’t care about me at all. That same day, during music class I sat inside a hollow ramp thingy crying for the first half of class. Even though I had a few friends in the grade below me, things were harder for me when we went on a field trip for 3 days. I don’t know how to join a conversation without changing the subject completely so I was left out of conversations. I was too afraid to tell my mom about it because she once told me, “People just can’t accept you. You have to be accepted into society” Which isn’t surprising since she’s a GI doctor who works a lot with high support needs autistic children. So it is obvious that she wasn’t a fan of the neurodiversity movement. Partially because of that and the fact that she and my father are immigrants from Egypt, where autism is poorly understood and I’m guessing that neurodiversity isn’t heard of over there.

    The next school year, the two girls transferred away and for some reason I was rather sad about that because I have grown attached to one of them over the course of half a decade, even though she didn’t show any kindness to me in return during our last few months with each other. I was the only student and I had an amazing teacher then at the very end of the year a girl named Olivia (Not her real name) transferred to our school. Being depressed from my past experiences with another new student who would harass me in earshot and then deny it, I started to harass her out of insecurity and jealousy. Even though I willingly apologized to her infront of our parents, siblings, teachers and principal during the middle school graduation, I still feel that wasn’t enough.

    I wonder who is the person to blame. Am I the person to blame for annoying if not traumatizing my classmates in 7th grade with a horrible short movie by Autism Speaks and then bullied Olivia? Or was Mary being toxic to me which traumatized me to the point where I chose to bully someone who was nice to me? Why am I mean to the people that are nice to me and nice to the people who are mean to me? Even though I was supposed to cut those toxic jerks from my life, I was too attached to them. I’m not trying to find an excuse for being such a jerk to Olivia? I just want help. I really had to get this all out since I have nobody to talk to.

    Liked by 2 people

    1. Having nobody to talk to sounds like a problem. Have you made many friends in the Autistic community online?

      It sounds like you were in pain and you tried to feel better at someone else’s expense. You were a child and you made bad choices.

      It sounds like you learned from the experience and that you regret your past behavior. Bad people don’t sincerely regret causing pain. That suggests to me that you are not a bad person.

      Showing the Autism Speaks video probably wasn’t a good idea because you exposed people to the toxicity, but I don’t think you meant it that way and I think it’s okay to forgive yourself.

      My tip would be to be kind to everyone and then distance yourself from people who make a habit of being unkind in return. (Once or twice could be an accident or misinterpretation, a habit is not.)

      You sound like you’re struggling. Now is a time to reach out to people you can trust. Maybe there are some adults you can open up to. I think counseling might be a good idea, since you clearly have a lot on your mind and it may help to sort through it with someone who’s a good listener.

      Liked by 1 person

    2. Does it at all worry you that the genetic markers for autism will be discovered in less than ten years?

      I worry that people will see A$ and abort their autistic fetuses. As a independent, I believe that that fetus has a right to exist and I worry that will be the end of the autistic minority group.

      If you need evidence, it is already happening to people with Down syndrome already, don’t they have the right to exist too.

      If society continues with this, are we better than the Nazis that attempted the same thing?

      Liked by 1 person

      1. It does worry me. I’m concerned that finding the genetic markers for autism will focus on eradication.

        I agree that what’s happening to fetuses with Down syndrome is bad, and that it shouldn’t happen to autistic people. I’m a little different; I believe that fetuses (nor people who’ve been born already) shouldn’t have the right to make use of someone else’s body without permission. But there’s a big difference between someone who says “I can’t handle this happening to my body” and someone who says “I’m good with pregnancy, but if the baby is disabled, then never mind.”

        The rise of “designer babies” and selective abortion of “undesirables” would be a huge loss for humanity as certain types of diversity are erased.

        Nazis are less popular now, but eugenics still exists. I see it coming from both the left and the right, and that troubles me. A truly great society should care for all its members, not just those it deems worthy.

        Liked by 1 person

        1. It depends how autism is markets, I say triple the IQ and add autism to the mix and market it as an enhancement. Also, what is stopping the parent from lying to abort their autistic child anyway. Neurotypicals are less honest and loyal than autistics.

          Liked by 1 person

          1. I’m the type of person who doesn’t like to see any type of brain or another as superior. I think all kinds of minds have value. It probably helped to grow up in a neurodiverse family, including a wise neurotypical dad and a loving sister with Down syndrome. (My mom doesn’t want us discussing details of her neurotype outside the family.)

            Lying will always exist in the world. Immorality will always exist too. I try to remember that while I can’t erase that, I can work on making my little corner of the world kinder and more positive. And I hope that I can share that positivity with others, so maybe it’ll make their lives nicer too.

            My hope is that by fighting ableism and encouraging equality, we can make the world a better place for autistic people and all the others with disabilities too.

            Liked by 1 person

  2. Even worse. I looked at their 100 day kit once and it was the original thing. The next time it is cleaned up of everything that made it controversial. I’m just curious to know why they are doing this now when they never apologized for the pain and suffering they have been forcing upon us for a decade and a half.

    Liked by 1 person

    1. Their actions suggest that they care about their reputation and their bottom line, not the actual well-being of autistic people.

      They want to stifle criticism, not actually be responsible.

      Like

  3. You also forgot the fact that they only focus on white children. I also think they need to represent and educate different cultures on autism. My parents came from Egypt and even though our dear Abdel Fattah el Sisi has done a lot creating more special needs schools, they are only accessible to the rich. In rural Egypt autistic kids are sometimes put in cages. In Egypt you are either seen as charming yet weird or someone who was cursed.

    I’m currently writing a book about an autistic Egyptian-American Muslim woman who is an astronaut for NASA who falls in love with an astronaut ghost to help educate people about autism, Egypt, Egyptian culture, Egyptian American culture, Islam, and how autism is looked at in my culture.

    Liked by 1 person

    1. Yeah, Autism Speaks has so many issues not covered here.

      I’m sorry to hear that autism acceptance isn’t common in Egypt. Children don’t belong in cages.

      That sounds like an awesome premise. Autism, astronauts, fun supernatural stuff… I love it.

      Like

  4. Just the other day, my sister and I were having a conversation (completely unaware of this new development) in which we mentioned that we thought that “Autism Speaks was improving.”

    I really appreciate you bringing this to light. It’s difficult to see that even now, in this (overwhelmingly) digital age of free information, it’s these people who have the say, power, and pretty blue-and-sunset blindfolds to hand out.

    Of course, the scales seem to be tipping (albeit slowly) in ASAN’s favor. Thanks again, Luna, for the kindness and awareness you bring.

    Liked by 2 people

    1. They certainly, on a superficial level, appear to be improving. It’s natural that you might think that if you didn’t know the full picture.

      I’m glad, too, that more people are trusting autistic-led organizations instead of groups that don’t have autistic people’s best interests in mind. I hope to see this trend continue and to see groups that actually care about neurodiversity instead of just appropriating it.

      I wish you and your sister the best.

      Liked by 1 person

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