Well, here we are. “Autism Awareness Month.” The time of year in which talks about autism will permeate well into the public consciousness. One of the larger organizations you will see leading the charge this month is one called Autism Speaks. This is rather unfortunate, as Autism Speaks is a charity that is loathed by the autistic community. The pervasiveness of this atrocious organization is what inspired me, two years ago in April of 2017, to write my very first piece concerning autism. It was an essay titled “Why I oppose Autism Speaks, and why you should not support them.” It was published on an unlisted site, and was well received by family and friends. It was a monster essay, being well over 4,000 words long. In it, I outlined multiple reasons why Autism Speaks is a harmful organization to autistic people, and why they should not be supported. Given that we’re back around to April and people are still pouring their money at this organization, I have decided to resurrect the essay in an abridged format here. I have done some revision to reflect current facts, and have added some to it. Therefore, this is a mix of old and new writing.
So, here is why myself and many other autistic people do not support Autism Speaks, and why over 60 disability charities worldwide have denounced Autism Speaks:
Autism Speaks spends very little money on helping autistic people alive today. Instead, it funds research to identify genetic markers for autism in the hopes that a prenatal test for autism can be developed, and give people the option to abort a baby just because it has autism. According to Autism Speaks’ own spending reports, in the last three years less than 4% of their budget goes towards “family services,” which is just about the only thing Autism Speaks does that can be remotely defended as charitable. Their largest area of spending is in fundraising and marketing, with around half of their budget going towards awareness campaigns and media, many of these which continue to portray autistic people in an inaccurate, exaggerated, stereotyped or otherwise negative way. Around 5% of the budget has gone towards paying the massive salaries of their board members, some of whom make well over $400,000 a year. Yes, Autism Speaks spends more on paying its board members than it does on charitable work that could benefit autistic people. The rest, a number hovering around 35%, goes towards research. In the past this has gone towards “cure” research, but as it has been discovered that any sort of “cure” for autism is an unreachable goal, they have shifted their research funds towards finding genetic markers for autism. The sole purpose of this research would be to develop a prenatal test for autism so that autistic fetuses can be selectively aborted. This falls under the category of eugenics, and is generally considered entirely unethical by society at large except, seemingly, in the case of developmental disabilities. I am rather hard-pressed to believe that an organization that spends so much money making sure that people like me no longer exist in the future truly care about autistic people. If Autism Speaks spent as much money on “family services” as they do on research, they could make a big impact in the lives of many autistic people and their families, but based on their budget it seems autistic people in the present isn’t a concern of theirs.
Autism Speaks is not for autistic people. Go to the Autism Speaks website, and you’ll see all sorts of resources. Resources, for parents, for siblings, for educators, for caregivers, but… wait… where are the resources for autistic people themselves? You’ll find none. Not a single toolkit designed for us. Not a single word of encouragement. In fact, it seems like the whole thing is set up specifically with the assumption that autistic people will not read what’s written there, as its all addressed to non-autistic people.
Autism Speaks is responsible for hateful “awareness” campaigns that demonize autistic people. They describe autistic people as burdens, and autistic lives as tragedies. Recently (as in, within the last 2-3 years), Autism Speaks has begun to clean itself up, and add a little “window dressing” to its public image. Autism Speaks was once notorious for using all sorts of offensive, negative language to describe autistic people. To be fair, they have since toned down this rhetoric quite a bit, and have removed “cure” from their mission statement. However, in the past words like “burdens, broken, trapped, tragedies, missing, and ‘global health crisis’” were once (and even today, occasionally are) commonplace on the Autism Speaks website to describe autistic people. My life is not a tragedy, and neither is anyone else’s. Every life is precious, and every life can be lived fully. Their advertising, even now in some cases, relies on fear and stereotypes that treat autistic people as sub-human. Autism Speaks tells the world that autistic people are ultimately the reason that many parents divorce each other, and that autistic people are incapable of living full lives. Autism Speaks is also responsible for the atrocity known as “I Am Autism.” It was a video that was released as part of an awareness campaign. In the video, the narrator, identified as “autism,” goes about spouting hate and stereotypes while images of autistic children in their worst moments are shown onscreen. Things such as “I am autism, and I will ensure your marriage will fail,” are stated. The video was ultimately removed from the Autism Speaks YouTube channel. Autism Speaks also put out a video entitled “Autism Every Day” in which the mother of an autistic girl explains that she has contemplated committing a murder-suicide with her autistic child, while her child was in the room to hear this. She went on to explain that she never did it because her non-autistic children needed her. This is the sort of awareness that spreads prejudice against autistic people. It is the sort of fear-based propaganda awareness that leads to ableism in our society.
So, what’s the big deal? If this sort of language is less common now with Autism Speaks, what does it matter? Well, I’ll tell you. Talk is cheap. There’s a good quote I like that says (with me paraphrasing) “Don’t tell me what you’re priorities are. Show me your budget, and then we’ll know what your priorities really are.” Autism Speaks’ budget has not gotten any more supportive of autistic people since their change in language. They’ve removed the word “cure” from their mission statement, sure, but this and other superficial changes seem rather pointless when you consider what this organization is actually doing.
Autism Speaks speaks about autistic people without autistic people. As an organization that claims to speak for autism, they have minimal autistic representation on their board or in higher leadership positions. This is essentially the equivalent of having an organization that claims to speak for women and is being run almost entirely by men. For most of its existence, Autism Speaks has had zero autistic people on its board of directors. This changed in 2017, they did add two autistic people to their board. However, this was done at the same time as the number of people on their board was expanded, meaning currently autistic people make up two of thirty Autism Speaks board members. Autistic people still have essentially zero real say in this organization, as these are little more than token positions. For an organization that claims to “speak for autism,” you’d expect that autistic people would have a significant role in directing such an organization. But this isn’t even close to the case with Autism Speaks. Autism Speaks regularly advises on directives that directly impact the lives of those living on the autism spectrum. There are very important issues facing the autistic population in the United States and in the world at the moment. Autism Speaks is insistent on being an organization that plays a role in legislation, awareness, and community outreach regarding autism. It is disturbing that they didn’t think to take seriously the input one group of people whose lives will be most impacted by the potential consequences of their actions. The group they claim they are trying to help. Would you support a supposed racial equality organization whose board was 95% white? I sure wouldn’t. So why would you support an organization that does the same thing, but in the area of disability?
There are a number of other gripes I have against Autism Speaks. For one, they have a long history of supporting the highly controversial regularly-human-rights-violating Judge Rotenberg Center that uses electric shock therapy and solitary confinement in an attempt to make their autistic clients “look” less autistic. Autism Speaks has also been quite sympathetic to the anti-vaccine movement at certain points. Finally, Autism Speaks continues to silence and bully autistic people who voice concerns they have about their organization via social media.
After all of this, you may be wondering what I think it would take for Autism Speaks to stop being something the autistic community loathes. I can’t speak for the entirety of us, but here is a list of things that I believe Autism Speaks needs to do to before I will even begin to consider it a legitimate, supportable autism charity:
- Offer a formal, written apology to the entire autism community for their previous rhetoric and behavior. Apologize to all autistic people for all the nasty things they have called us. Apologize to us for all the harm they have done in spreading their fear rhetoric.
- Actively attempt to track down and remove any remaining “bewareness” fear-mongering materials they had previously produced, including videos, ads, pamphlets, PDFs, websites, and other materials.
- Change the makeup of their board to have at least 51% autistic representation. I do think the voices of parents, professionals, and educators are all important in the discussion about autism, but none of those are as important as the voices of autistic people. As such, any organization that claims to speak on autism needs to be led in majority by autistic people.
- Re-allocate all incoming funds. Eliminate any funding to genetic/prenatal research and instead put those funds towards research that looks to improve the lives of autistic people alive today. Cut back on funding towards marketing and “awareness” campaigns and instead put these funds towards actual charitable work that supports autistic people and their families (and which is their lowest spending category at present).
- Drop the overwhelming focus on autism awareness and instead embrace autism acceptance. As I have stressed on this blog several times before, awareness is not enough. As such, the “Light it up Blue” campaign needs to be dropped entirely. Perhaps they could replace this with the neurodiversity friendly #WalkInRed or #LightItUpGold campaigns.
- Provide specific resources directed towards autistic people. Not just parents. Not just caregivers. Real, actually autistic people.
If all of these things are done and Autism Speaks starts to show a pattern of doing good things for the autistic (and broader autism) community, then I might just consider them an organization I can get behind. But until then, I will continue to speak out against the active harm Autism Speaks is doing.
Unfortunately, Autism Speaks is the largest well known charity for autism, so the dollars of those who wish to support people on the spectrum are likely to end up in their coffers. Most people are ignorant of the nature of this organization, and they donate with good intentions. However, now that you have read this article, you have no excuse for supporting them. I made it very clear why this is an organization that should not be supported, and one that I would argue is hurting autistic people.
I encourage you to not light it up blue. Don’t go to the Autism Speaks autism walks. Before you post something on autism awareness, read it and think about whether it will create prejudice towards actually autistic people. And especially do not donate to Autism Speaks. When you donate to a charity, donate to a charity that is focused on helping autistic people alive today instead of focused on preventing us from being born in the future. This little bit of support can make a huge difference for many of us. Please. It’s time to listen; listen to those who will be impacted by this the most.
Finally, I encourage you to read what other autistic people have been saying about Autism Speaks. You can do a Google search for “Autism Speaks does not speak for me” and all sorts of results of autistic people speaking out against Autism Speaks can be found. Our voices matter.
For now though, I will leave you with my pledge: I am Quincy. I am 17 and I am autistic, and Autism Speaks does not speak for me!