In an effort to be fair and balanced (rather than being opinionated and unbalanced like I usually am), I toodled over to the Autism Speaks website to do some research, and… Well, let me start at the beginning.
Autism Speaks is often the first organization one stumbles upon when searching for answers at the beginning of their autism journey, and that’s true whether they are a late diagnosed adult like me or a parent of a newly diagnosed child. And that’s a pity. It’s such a pity, in fact, that I won’t even provide you with a link to their website for reasons that will become abundantly clear below.
Yes, Autism Speaks is one of the largest, most high profile, most heavily funded autism-related organizations out there, but it has an abysmal reputation. They’ve been trying to clean up their act, or perhaps whitewash themselves, in recent years, such as joining other organizations in urging the FDA to ban electrical stimulation devices (ESDs) that basically deliver electrical shocks to children who engage in self-injurious or aggressive behaviors, but despite that, the damage they’ve done to the autistic community is so great that I’d even go so far as to call them a heavily veiled hate group.
If you know nothing else about this organization, know this: In 2009, Autism Speaks put out a commercial called “I Am Autism.” It caused so much controversy that they yanked it down, but not before it burned a few stereotypes into English-speaking culture that autistic people still struggle against to this very day. As of this writing, you can still see this video on YouTube, because it’s still on one private individual’s channel in order to warn people about this organization. If you want to see it, you’ll have to go find it yourself. It made me cry. If you want to cry, fine, but I don’t want to make it easy for you.
I will provide you with these links, though. The completely amazing and highly recommended Autistic Self Advocacy Network keeps a transcript of the ad here. They do so because this disgusting violation should never be forgotten. I will give you a tiny taste so you know why people are so outraged about Autism Speaks’ commercial.
The ad starts off with ominous music that sounds like the theme from Jaws. Then there’s this voiceover that claims to be autism. Much like the disreputable organization that made the commercial, it speaks. It says things like:
I know where you live.
I work faster than pediatric aids, cancer, and diabetes combined.
And if you’re happily married, I will make sure that your marriage fails.
I will bankrupt you for my own self-gain.
Can you see why many of us in the autistic community are so pissed off? They make it sound like we’re afflicted with the plague! It sounds like we are a burden. It sounds like we will destroy the lives of everyone we come in contact with. It makes it sound like having an autistic child or sibling is the end of the world. It’s as if autism were even worse than a deadly disease.
Autism Speaks has perpetuated a lot of other myths over the years. Their primary reason for having been created was to find a cure for autism. Hello? There is no cure. We are not broken. We don’t need to be fixed. We need to be supported and accommodated in this neurotypical-centric world, yes, but not fixed. There is no “normal person” hiding behind some autistic tumor that, once sliced out, will give you the autism-free family member of your dreams. Telling parents that there’s hope along those lines is cruel. Subjecting children to the draconian tactics that are suggested in an effort to achieve that fictional cure is even more cruel.
In their search for a cure, Autism Speaks has propped up a lot of pseudo-science that has caused immeasurable damage. They were strong supporters of the myth that autism was caused by vaccines, for example, even long after that harmful stupidity had been debunked. There is no telling how many people failed to give their children life-saving vaccinations because of this. And along with propping up that nightmare, which flies in the face of all public health initiatives, the anti-vax movement taught people to fear autism. Lock up your daughters! Autism is coming to town! Boogedy, boogedy! (In fairness, according to their literature, Autism Speaks no longer supports the anti-vax movement, but that change is recent, and they’re not being overly vocal about it. They are not making any significant attempts to repair the damage that they have done by supporting it for years. It’s more like, “Oops…”)
If you go to their website, you can get a free “100 Day Kit for Families of Newly Diagnosed Children.” I snuck over there and did so. You have to give them your email address to get it. I made that sacrifice for research purposes, and then unsubscribed the very second I got their first spam. I wanted to see what all the fuss was about, because this kit, too, has been very controversial.
I read it cover to cover, and at first glance, the publication seems quite compassionate. It no longer contains the words “cure” or “cancer” in it. (Yup, they used to make autism seem worse than cancer in this publication, too.) It also is no longer quite as blatant about implying that any parent with an autistic child is going to go through the 5 stages of grief, as if the child were stillborn or something. But it still dwells quite a bit on what a tragedy this is, and how you have every right to be profoundly depressed.
To that I say, yes, mourn the loss of the child you thought you were going to have, and mourn the hopes and dreams for that nonexistent child that might now be out of reach, but don’t do it anywhere near your actual child, and definitely do not blame or mourn the actual child you have. That child is here, and he or she needs your love and care. The child you have may not be the gift you anticipated, but he or she is still a gift and can bring a lot to you and to the wider world if given the chance.
One thing that still shows up in the kit is the GFCF (Gluten-Free, Casein-Free) diet, which some people call the autism diet. While Autism Speaks makes a point that they don’t give medical advice, they sure suggest this diet quite a bit (Three times in this kit alone, as a matter of fact). And you’ll find plenty of hucksters out there who are willing to talk you into hopping on the GFCF bandwagon in order to separate you from your money. Please don’t fall for it, and don’t torture your child in this way.
No credible medical organization, not even the American Academy of Pediatrics, believes that the GFCF diet does any good at all. Sure, some parents will sing its praises, but the only scientific evidence those praises provide is that the placebo effect works on desperate parents, too. Any organization that promotes the GFCF diet for autism is highly questionable.
It must be terrifying when you can’t get your child to take in adequate nutrition. I’m sure at a certain point you’re willing to try just about anything. But GFCF is something you should avoid. Trust the pediatricians on this. Stomach issues are a huge part of autism, because our stress levels are about 100 times higher than your average neurotypical person’s. That’s just a fact of life. And to add another layer of complexity, some people on the spectrum are extremely picky eaters and/or have sensory issues related to food texture. So if you limit their food choices even more by forcing some bogus diet on them, you’re going to make things even worse. The fact that Autism Speaks doesn’t mind wasting your time with the GFCF diet when you’re feeling so desperate shows that they don’t have your best interests at heart.
And while this organization no longer uses the word cure, the bulk of their funding still goes toward research (along with outrageous executive compensation), and much of that research is genetic. There is a great deal of concern that this type of research is eugenic in nature. If tests are developed that will allow parents to determine if a child will be autistic before it is born, much as it is possible to determine if a child has down syndrome before it is born, then many differently-abled children may be deprived of life.
Please understand. I am pro-choice, and I believe there are many viable reasons for having abortions. I believe that women should have a right to choose what to do with their bodies. But I do not believe that holding out for your perception of the “perfect, umblemished child” is a valid reason for an abortion. Not at all. If you’re planning and/or willing to have a child with your partner, and that child has a reasonable expectation of being viable and having it will not put your life at risk, then you should carry on with that pregnancy. Eugenics is not a card that you get to play. So Autism Speaks’ research along genetic lines is highly suspect.
Another controversy about Autism Speaks is that it promotes applied behavior analysis (ABA) therapy, which, the more I learn about it, the more horrified I become. Much like cognitive behavioral therapy (CBT), it seems to promote masking, which suppresses natural autistic traits and behaviors. Setting autistic people up for such failure and trauma is unacceptable.
Personally, I even hate the Autism Speaks logo. A puzzle piece? Really? We’re not some puzzle to be figured out. We’re not a piece of something. We are whole people. That organization wouldn’t know that, though, because their board of directors has almost always been exclusively packed with non-autistic people. In recent years they have thrown a few autistic people in there due to criticism, but at least two of them have resigned in utter disgust.
The reason I became so focused on this topic today is that a friend reminded me of the controversy about Sesame Street teaming up with Autism Speaks back in 2019. Let me preface this with the fact that I see no hint that Sesame Street is currently linked to Autism Speaks on either organizations’ website, but the PSAs that I’ll discuss below still show up on the Autism Speaks YouTube Channel, with the comments turned off. (I’m sure they had to do that because they were flooded with criticism by the autistic community.) They do not show up on the Sesame Street YouTube Channel, however, which gives me the impression that the folks at Sesame Street their regrets after the public outcry. And the Sesame Workshop Autism Initiative website looks pretty amazing and makes no mention of Autism Speaks. Huge relief. Huge.
When it first came out that Sesame Street would be working with Autism Speaks, the Autistic Self Advocacy Network urged them to change their mind and explained why, but Sesame Street chose to ignore them. This caused ASAN to break ties with Sesame Street. They had been advocates of Sesame Street up to that point, especially when they introduced Julia, an autistic muppet that has made great strides in increasing understanding of autism in the wider population. Many of us in the autistic community still love Julia, but are heartbroken that she was used as a gateway to Autism Speaks in 2019. It is Julia who stars in the aforementioned PSAs, which hawk that controversial 100 day kit I described above. In the autistic community, we trusted Julia, and now she was directing people toward an organization that we don’t trust at all.
I can’t emphasize this enough: I hate the idea of Autism Speaks taking up residence on the most wholesome, loving, and inclusive street on earth. That would be like inviting Hitler to move into the other half of a duplex that is occupied by Mr. Rogers. There goes the freakin’ neighborhood! But maybe Sesame Street has wised up since 2019, since the scandal hit. After finding no mention of Autism Speaks on any of the Sesame Street web pages, even amongst their list of autism resources or autism sponsors, it was time to round out my research.
So, as I said at the top of this post, I toodled over to the Autism Speaks website again. I typed in “sesame” and clicked on their little spyglass search thingy, and poof! I was tossed out without so much as a fare-thee-well.
Really? The word “sesame” is considered some sort of nefarious security breach? Not only did I get an error 15 code, but I also tried to go back to the previous page, and it would not let me. I tried accessing their home page from a different tab, and then a different browser, and got the same unyielding error code.
All I had wanted to do was see if Autism Speaks had cleaned up its act. So I’m thinking no, they haven’t. While it does appear that Julia has set herself free, in the process, Autism Speaks has learned how to make itself look all shiny and nice and inclusive, unless you ask too many questions. That makes me weep for people who are new to the world of ASD. They might get sucked in by this wolf in sheep’s clothing. I mean, Sesame Street, even with warnings, got sucked in, so Autism Speaks is good at what they do. Unfortunately, what they do does not have the autistic community’s best interests at heart.
Anyway, it’s official. I’m now persona non grata in Autism Speaksland. I actually take this as a point of pride. And yes, I know there are ways around an error 15 code, but I also know when I’m not wanted. Hmph.
Open sesame, Autism Speaks. Open sesame.
Dear Reader, you, of course, are free to form your own opinions, but if you’re asking for mine, I urge you not to support, promote, or rely on information from Autism Speaks.
Additional Sources:
How a ‘Sesame Street Muppet’ became embroiled in a controversy–Washington Post
Trouble on Sesame Street — Slate
The Autism Speaks Controversy, Explained
ASAN letter urging FDA to release final rule
Is Autism Speaks Bad? Understanding the Criticism and Controversy.
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