Autism Speaks is the Largest Autism Organization — So Why Don’t Autistic People Like it?
They receive the most funding and attention, but they’re no angels. Here’s why I, and most other autistic advocates, say Autism Speaks harms our community.
Even before I realized I was autistic, I didn’t like Autism Speaks. The organization has had a reputation of speaking over autistic people instead of elevating our voices, and I knew I wanted no part in that. Especially a few years ago, their website was exclusively tailored to parents of autistic children, only further alienating people like me. They used to put out advertisements that seemed to demonize autistic people. It was off-putting.
Today, the website looks different. Autism Speaks has made attempts to superficially improve their image. So, is Autism Speaks un-cancelled?
No. I’ll make that clear here. Though they may have made attempts to look different, they are still not organization you should support. I was inspired to write this article by a recent Twitter hashtag trending in the autistic community. #EndAutismSpeaks. It’s a good hashtag, but for people not already involved in autism advocacy or disability rights, looking at the Autism Speaks website is not obviously heinous. I would like to explain here why I, and most other autistic people, urge everyone not to donate to the largest autism organization.
We’ll start with a brief explainer on what Applied Behavior Analysis is, then a section on Autism Speaks’ past failures. Finally, we’ll wrap up by talking about why, despite their changes, they are still a net negative for the autistic community.
I’m not paywalling this article because I think it’s important information, so if you find it useful, share it. If you’d like to contribute to my work, consider donating to my Kofi.
What’s ABA?
ABA, or Applied Behavioral Analysis, is the most popular treatment for autistic people in the United States, where Autism Speaks is based. It is strongly supported by Autism Speaks. It draws on the behaviorist school of psychology and focuses on the alteration of behavior using operant conditioning. Operant conditioning is the practice of rewarding desired actions and punishing unwanted actions — it is a method that, according to this paper, focuses on “reversible behaviors”, meaning that operant conditioning, and ABA as a whole, is ill suited to work for autism, which is an irreversible neurotype, not a reversible behavior. ABA only forces autistic people to mask, often through trauma. ABA has a history of using shocks as punishment (and some places still do), though, Autism Speaks is against the electrocution of autistic people. Therapists also withhold things as punishment (toys, playtime) or in some cases spray water in the child’s face — still unhelpful and possibly abusive practices for autistic children.
ABA therapy is intensive. The goal is usually upwards of 30 hours per week on top of school. It has been criticized for limiting the free time of autistic children. Studies have failed to show that non-speaking Autistics, the population most likely to be put into ABA, benefit from the therapy. The focus is usually on one specific task at a time, such as making eye contact for a set length of time. However, studies have shown that these discrete skills are not readily generalizable to other scenarios — in more simple terms, learning to make eye contact for 20 seconds with a therapist does not lead to better eye contact in naturally occuring conversations.
ABA forces autistic children to mask, to deliberately hide autistic traits. It does not seem that autistic people learn to like eye contact, for example, but simply learn to tolerate it from the external motivators they are faced with. Without maintenance, it has been found, autistic people will generally “lose” the skills they learned in ABA — they go back to their default state of being autistic. The basis of ABA is on turning autistic people into neurotypical-mimics — it encourages masking, which has been found to have poor mental health outcomes for autistic people. ABA as a whole is an unhelpful and often harmful practice for ABA, but unfortunately remains widely used on autistic children.
The Egregiously Bad
This section will be dedicated to notable negative actions/media that Autism Speaks has done in the past. I have no set time cut-off but am generally focusing on the worst incidents before 2018.
Before I get into details, I want to mention that Autism Speaks has not apologized for any of these incidents, though they have pulled some videos from their channels and website. This is part of why I find them irredeemable — they are unwilling to hold themselves accountable for the harm they’ve done.
“I Am Autism” Ad
In their most infamous ad spot, Autism Speaks uses horror movie language to describe autism.
“I am invisible to you until it’s too late.”
“I know where you live.”
“I work faster than pediatric AIDS, cancer, and diabetes combined.”
“If you are happily married, I will make sure your marriage fails.”
“I will fight to take away your hope.”
“I will plot to rob you of your children.”
“You are scared and you should be.”
This ad is horrible. Point blank. I would hope someone reading this article can see why I, and most other autistic people, are disgusted with this ad, but since I am writing for people unfamiliar with autism advocacy, I’ll go into details.
Autism, for most autistic people, is a part of who we are. It is inseparable from us. I don’t know who I would be without my autism because it has shaped so much of my experience. Autism touches every aspect of my life.
So knowing that autistic people view their autism as part of themselves, attacking autism, demonizing it, is attacking autistic people. It teaches neurotypicals, especially parents, the target audience of Autism Speaks, to fear autism instead of understanding it. Rhetoric like this leads to the horrific “cures” for autism. Autism Speaks goes out of its way to scare parents, leading them to hurt their children while thinking it’s for their benefit.
Spotlighting Parents Who, Seemingly, Hate Their Children
In part of Autism Speaks’ documentary, Autism Every Day, they interview Alison Singer, a mother of an autistic child. During the course of the interview, with her autistic child, Jody, present, she says the following.
“I had sat in the car for about fifteen minutes and actually contemplated putting Jody in the car and driving off the George Washington Bridge.”
“It’s only because of Lauren [who is neurotypical], the fact that I have another child, that I didn’t do it.”
Autism Speaks chose to highlight a parent thinking about killing herself and her child — one who only talked herself out of it because of her neurotypical child. It would be one thing, still bad, if Singer had been distraught or at all emotional while recounting the incident, but she is not. Her tone is light. She smiles while talking about killing her autistic child. And Autism Speaks chose to broadcast this in a film ostensibly about autism advocacy. Again, this type of speech is a dangerous result of rhetoric that Autism Speaks uses — when you view your child’s autism as a horrific, life-ruining curse, you think like Singer.
Even worse, Singer was an executive vice president at Autism Speaks. She was a leading figure in the organization, an organization that claims to speak for autistic people — and she spoke openly about thinking of killing her autistic child. I cannot overstate how disgusting this is.
Singer is the founder and president of the Autism Science Foundation — I would encourage anyone who cares about autistic people to boycott them, too.
In November of 2013, Autism Speaks co-founder Suzanne Wright wrote an article for the Washington Post urging a national plan for autism. She speaks primarily about parents of autistic children. Here are some quotes.
“Life is lived moment-to-moment. In anticipation of the child’s next move. In despair. ”
“If three million children in America one day went missing — what would we as a country do?”
“We’ve for the most part lost touch with three million American children, and as a nation, we’ve done nothing.”
The quotes here capture a similar mood to the I Am Autism ad — the idea that autism is a tragedy that mostly affects parents. I will acknowledge that Wright makes a few good points. There should be more government support for autistic people who need it and this will often include support for families. But it is unhelpful to focus primarily on the families of autistic people. Autism Speaks, as an organization that claims to be for autistic people, should actually focus on autistic people.
The rhetoric that autistic children are “missing”, or that society has “lost touch” with them is simply false. Autistic children are still here — they are still whole people living rich lives. Parents should not be mourning their “missing” children — they should be giving their autistic kids the best life possible. That likely involves more government assistance, but it shouldn’t involve the language that Wright uses.
The Currently Bad
Autism Speaks has made attempts to improve their image — they have blogs written by autistic people and provide resources for autistic adults. They have also added an autistic person to their board. Despite these changes, however, Autism Speaks continues to be a harmful organization for autistic people.
The Puzzle Piece Logo
Autism Speaks’ logo is now regarded as the logo for autism advocacy nationwide, something that many autistic people take issue with. Their logo is and has always been, a puzzle piece. The history of the puzzle piece logo is described in-depth in this article, but in short, the puzzle piece has a history of being associated with ableist groups claiming to act for the benefit of autistic people.
The biggest problem with the puzzle piece logo is that it implies that there is something missing, that autistic people are somehow incomplete. This is offensive and frankly wrong. We live complete, fulfilling lives not in spite of our autism, but because of it. I said it earlier, but again — you cannot separate a person from their autism.
Another problem with the puzzle piece that the linked article points out is how infantilizing it is. Puzzles are toys associated with children. Although adults also enjoy them and should be able to, it’s unhelpful to use childish imagery for autism. Autistic people are already infantilized enough, and a common complaint of autistic adults is that we are treated like children. Autism Speaks has, for years, received complaints pointing out how harmful their logo can be, but has made no attempt to change it. If Autism Speaks wants the support of autistic people, it should represent us authentically, not speak over us.
Autism Speaks, despite continued dissent from many autistic people, continues to support ABA. In a recent blog post, an autistic person discussed their positive experience with ABA. Though this individual expressed a positive experience, the data does not back up ABA.
A meta-analysis failed to find that Applied Behavioral Analysis (called Applied Behavioral Intervention in the study), was effective. More shockingly, this study found that autistic people exposed to ABA were 86% more likely than those who hadn’t to meet the criteria for Post-Traumatic Stress Disorder, which is brought on by severe trauma. These two studies, on top of the information above, should be enough to discredit ABA. For an organization that claims to look for scientifically-backed ways to help autistic people, Autism Speaks is failing horrifically in the ABA department — and hurting autistic children in the process.
Focus on Parents and The Autism Speaks Board
These two points are together because they are related. It is no secret that Autism Speaks caters to parents. Both I am Autism and Autism Every Day come from the perspective of parents. Though they have tried to provide resources for autistic people, these resources seem to just be thrown together from existing parental resources. On the Autism Speaks site, when I click that I am an autistic person and download their transition toolkit, which is supposed to assist young autistic people in transitioning into living away from home, I receive a guide that is decidedly not tailored to autistic people.
“Your child … your child … your child.”
This is written for parents. Even when I go out of my way to get resources for an autistic adult, I fail. Why does Autism Speaks cater primarily to parents?
Because that’s who makes up their board. Of the 24 members currently serving, only 12 have firsthand experience with autism. The others are various business people or scientists — useful, but not necessarily the best at speaking for autistic people.
Of the remaining 12, 11 are parents of autistic people, and only one is autistic.
Until a few years ago, Autism Speaks had no autistic people on the board. The inclusion of one autistic person is a pathetic attempt to quell the concerns expressed by autistic people. Any organization that claims to speak for autistic people must actually represent autistic people by putting us on the board. In contrast to Autism Speaks, every single member on the Autistic Self Advocacy Network’s board is autistic. That’s how autistic organizations should be run — by autistic people, for autistic people.
Conclusion
As April, Autism Awareness Month, approaches, I dread the influx of well-meaning but misinformed people trying to support autistic people by supporting autism speaks. I dread the “Light it Up Blue” campaign and the puzzle pieces. But I hope that as more people search about autism, and as more autistic people continue to self-advocate, we will be able to slowly change the culture.
I hope that within my lifetime, I will stop dreading April. I hope that I will see people supporting organizations like ASAN — ones that are run by and for autistic people. I hope Autism Speaks will drastically change its policies and its board or shut down. I hope that autistic people will have more organizations that take us seriously.
That’s why I wrote this article, and that’s why I’m going to ask you to help. Tweet, talk to people, post something on Instagram, or share this article. Tell the neurotypical people in your life that Autism Speaks does not represent you. If you are neurotypical yourself, help us spread the message. We need to be loud. Autism Speaks is the biggest autism organization right now. They are well-connected and influential. We need to be louder. We need to stop them from speaking over us.
Be loud, be proud, and self-advocate. We deserve better than Autism Speaks.
Tori Morales (they/them) is an autistic college student writing about mental health, autism, and other topics. You can support them by using their Medium affiliate link or buying them a coffee.
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