.Hello, and welcome back to The Autistic Writer. I hope you’re all well. Thank you for stopping by and reading the blog, I always appreciate it. So, we are coming up to the halfway point of March, and Autism Acceptance Week looms ever closer. And like many autistic people, I’m kinda dreading it. While autistic people have long demanded acceptance rather than “autism awareness”, true acceptance will only come when the wider world and neurotypical culture accept real autistic people for who we are. The problem with an “official” Autism Acceptance Week is that it gets taken over by big-name autism organisations. Not all these organisations are completely helpful. For example, the National Autistic Society is an organisation I have mixed feelings about. I think there is a genuine attempt by them to do some good, but the attempt is fatally flawed, and will continue to be so while the NAS is linked with the likes of Simon Baron-Cohen. If autism acceptance was a long-running TV show about an intrepid band of heroes fighting off the forces of evil, the NAS would be one of those recurring villains who isn’t genuinely bad, but keeps going off the rails and causing trouble. Simon Baron-Cohen would be more like a recurring mastermind villain, pulling strings, and making bad things happen, while turning a smiling, friendly face to the world at large. But is he really the Big Bad in this show? Or is there another villain, even more powerful, more influential, more devious? Is there a really big Big Bad who will have to be confronted in the final episode of the final season that decides the fate of real autism acceptance? There is, dear reader, there is. Cue the dramatic music. The Big Bad is Autism Speaks. Come with me…
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First off… as always, I do not claim to speak for all autistic people. Some people will disagree with what I have to say, but I’m confident that most of the autistic community will broadly, if not passionately, agree with my points.
Throughout this month, many of us in the autistic community have been tweeting and posting online one simple repeated phrase every day: Autism Speaks is a hate group. Okay, if you’re not in the know, you might be wondering what Autism Speaks is, and why we are doing this. In fact, this whole blog post was prompted by someone on Twitter replying to one of my Autism Speaks is a hate group tweets, asking to know more.
Autism Speaks is a charitable organisation based around autism advocacy. They are based in the US, but have a massive global reach. Google anything with the word autism in it, and hits for Autism Speaks will appear pretty quickly.
The phrase, Autism Speaks is a hate group, is legendary in the autistic community. It famously appeared some years ago, with the words, is a hate group, added as graffiti to a poster about an Autism Speaks fundraising event (see the photo at the top of this article). So why the fuss? Well, let’s have a look at what Autism Speaks say about themselves:
Gosh, it sounds so positive, right? I mean, what autistic person wouldn’t want a world where all people with autism (sic) can reach their full potential, right? Although… something’s a little off about the person-first language of with autism, and what’s this spectrum of solutions stuff? Solutions? Why would autistic people need solutions? Hmm. Maybe we should look a little deeper. Let’s have a look at their mission statement…
So, more about solutions, this time for individuals with autism (sic: that PFL again) and their families. The phrase, life-enhancing research, is worrying. This is our first clear indication that, despite what Autism Speaks might claim elsewhere, they see autism as a problem to be solved; thus they see autistic people as problems to be solved. Autistic lives, it seems, aren’t good enough; they need to be “enhanced”. If there’s one thing guaranteed to piss off autistic people, it’s being told we are a burden on our families because autism is such a “problem” that needs “solving”. That’s a hell of a euphemism for something. I wonder what? And let’s not forget those timely interventions. Really? Interventions? You might be wondering, as annoying and insulting to autistic people as person-first language and talk of solutions or interventions is, does it really justify calling Autism Speaks as a hate group? Or is there more to be uncovered?
I’m not the first autistic person to blog about how Autism Speaks is an enemy of autistic people; a wolf in sheep’s clothing to the unwary. There is a lot of information out there, and to cover everything wrong with Autism Speaks would fill a book. So, I’m going to list the key points that I personally find particularly irksome, explain why, and then ask you to not take my word for it, but to do your own objective research if you haven’t already done so. Here we go…
Interlude: A brief message
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Cures and Treatments: Autism Speaks, in its early years, actively and openly supported the search for a “cure” for autism. It should go without saying that a cure for autism equals the eradication of autistic people. It should also go without saying that autism is not a disease, so talk of a cure is wholly inapporopriate. Autistic people are defined by neurodivergence. This is what makes us a social and cultural minority. To talk of curing autism is akin to ethnic cleansing; you are talking about wiping out a certain group of human beings. Some people might think I’m being melodramatic and using the suffering of ethnic minorities as a mule for autistic people. To be fair, I’m not saying Autism Speaks wanted to go out and mow down autistic people with machine guns. But there are different types of suffering, and believe me, autistic people have suffered throughout history. As a minority group in this world, autistic people should, like any other minority group, have a right to exist and live free from persecution. Autism Speaks have since removed all obvious talk of “cures” for autism from their mission statement. However, they still talk of symptoms, treatments, interventions, therapies, and so on. These are all terms that promote the medical paradigm of autism, and sow the seeds in the public consciousness that autism is a problem, and that there is something wrong with autistic people that needs to be “solved”. Can you imagine any other social minority accepting being portrayed like this? Can you imagine it being legal to refer to any other social minority in these terms?
ABA: Autism Speaks promotes the sickening “therapy” ABA on their website, as a supposed solution for autism. I could write a whole post about ABA – in fact, I did, here. For now, suffice it to say that the vast majority of autistic people utterly reject ABA. It has caused untold trauma to many autistic people, some of whom have gone on to take their own lives, and others of whom continue to suffer PTSD. This so-called therapy is horrific, and causes actual harm to autistic people. In no way can Autism Speaks realistically claim to be helping autistic people while they promote the vile practice.
Media: Autism Speaks have used some vile short films to promote autism in the most negative light possible. The I Am Autism commercial is stomach-churningly bad, and promotes the notion of autism as a disease that steals away normal children, leaving autistic changelings in their places. The film Autism Every Day focuses on mothers of autistic children, and included the horrific scene in which one mother talked about considering killing her autistic child.
The Cash Cow: Autism Speaks in a multi-million dollar charity, paying huge salaries to its top people, and funnelling similarly huge amounts of money into legal fees. Supporters of Autism Speaks claim most of the money raised goes into research, as if this is a good thing. What it actually means is that charitable donations are being used to pay the salaries and costs of researchers who are carrying out totally unnecessary work into treatments for, and “causes” of, autism, that autistic people don’t want or need. Like many charities, Autism Speaks exploits the goodwill of the unwary to provide shockingly lucrative salaries to the people at the top of the organisation. This financial behaviour of Autism Speaks is something that people should research for themselves, if they have any interest at all in the plight of autistic people. The information is out there; use the power of google.
Vaccines: Historically, Autism Speaks backed the view that vaccines cause autism. This has, of course, been widely discredited, and Autism Speaks have backed off from that position. But backing off was too little, too late. The damage had been done. Autism Speaks is, as we know, an organisation with a huge global reach and influence. They added plenty of dangerous fuel to the anti-vax fire; a fire that still burns today resulting in the disinformation that has hindered the fight against the covid pandemic.
The Puzzle Piece: Autism Speaks’ logo is the jigsaw puzzle piece, which the vast majority of autistic people are sick of seeing in relation to autism. We autistic people are not puzzles to be solved. We reject the puzzle piece as a signifier of autism. We see it as a symbol of hate. But showing complete disregard for the feelings of the people they claim to be helping, Autism Speaks continue to deploy this awful symbol, and the puzzle piece is now used on all kinds of autism-related products in a worldwide multi-billion dollar market – products bought by people who think they are showing support, but are actually causing hurt. Symbols and images matter. Every company and organisation uses a logo because they know these images are memorable and communicate meaning. Symbols are powerful indicators of history and intent. By continuing to use the puzzle piece logo, Autism Speaks are signifying their hatred of autistic people.
Mergers: Autism Speaks repeatedly increases its reach and influence by merging with or absorbing other autism-related organisations, including, ACRE (Autism Coalition for Research and Education), the National Alliance for Autism Research, and… wait for it… Cure Autism Now. Yes, that’s right, Cure Autism Now. This is a problem because the more their reach increases, the more people are influenced by Autism Speaks, and fall prey to their harmful approaches to autistic people.
The Cult of Celebrity: Autism Speaks acquires support from the rich and famous. A spectacular example of this is Hollywood actor, William Shatner. The legendary TV and movie star has millions of Twitter followers, and he is constantly tweeting his support of Autism Speaks, while simultaneously insulting and bullying autistic people who challenge him on it. When autistic people give him arguments he can’t dismiss, he just blocks them. His massive follower count means that autistic people on Twitter regularly suffer pile-ons from trolls and bullies. Celebrity influence is a thing, and the likes of Shatner are causing huge harm to autistic people, and drastically damaging hopes for true autism acceptance.
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I could go on. But in truth, I don’t want this blog post to be seen as an attempt by me to persuade people to hate Autism Speaks. I’m not trying to convince anyone, believe it or not. What I’m actually doing here is trying to provide a springboard of ideas that people can use to go and do their own research into why autistic people the world over are saying Autism Speaks is a hate group.
That’s all for this week. Until next time, take care, be good, stay proud.
Darren
Why Do I Write This Blog?
When I first found out I was autistic, I was a middle-aged adult and I knew nothing about autism. I quickly learned that there was a serious shortage of information and resources for adults in my situation. With this blog, I aim to inform about autism and autism-related issues as I learn, hopefully helping people who are on a similar journey of discovery. Like anyone who writes a blog, I want to reach as many readers as possible; if you like what I’m doing, please share it with your friends and followers. I will never hide this blog behind a paywall, but running the website does incur costs. If you would like to support, feel free to make a small contribution at BuyMeACoffee.Com.
You might also be interested in David Scothern’s blog, Mortgage Advisor on FIRE, which covers a range of topics including mental health issues and financial independence.
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