Why You Shouldn't Support Autism Speaks

By Rhiannon Winner on September 21, 2015

1 in 68 children will be diagnosed with Autism Spectrum Disorder (ASD). Autism has a very real presence in our society; you undoubtedly are related to or friends with someone on the spectrum. The severity in each case of autism is different, but especially in the most severe cases, there are kids who need help. I like to believe that humans are inherently compassionate, and if that is true, then it’s no wonder that Autism Speaks raked in $122,141,069 in 2014. People were legitimately trying to help autistic people, but unfortunately, Autism Speaks does anything but.

Autism Speaks frequently shows a video entitled “Autism Every Day.” In it, former senior vice president of Autism Speaks, Alison Tepper Singer, discusses her autistic daughter. One would expect this mother to focus on the challenges her daughter faces in life and how Autism Speaks had helped her daughter. On the contrary: she shared that she had almost killed herself and her daughter by driving them off of a bridge. The only thing that stopped her was her love for her other non-autistic child, waiting at home. She had such a cold heart that she genuinely considered murdering her own daughter. The worst part? She told this story in front of said autistic daughter. This is the woman who made important decisions concerning how Autism Speaks operated. The worst part: she’s not the only one. You would expect Autism Speaks’ board of directors to include primarily autistic people, yet not a single member is anywhere on the spectrum. Not a single position of any real importance, anywhere within the organization, is held by someone with ASD.

Autism Speaks releases annual reports which include a breakdown of their finances. What is horrifying is that hardly any money they raise actually benefits autistic people. A mere 4% goes to “family services,” and while research is 44% of the budget, most of it is solely focused on “prevention.” Instead of working to help autistic people who are already alive, Autism Speaks would prefer to try to eradicate autism in unborn children. Which, by the way, has been entirely unsuccessful. From the little bit of money that remains to help real autistic people and their families, it’s incredibly difficult to come by any of it. The stories of families in need of help who couldn’t squeeze a penny out of Autism Speaks are numerous.

One of the major issues that autistic activists raise is the way people with ASD are viewed. I grew up with an autistic family member who I love with all of my heart, but it was always hard to watch the way people talked about him. Adults would give him odd looks, and reeled in horror when it was mentioned that he is autistic. The only people who never judged him were people with ASD or who had an autistic family member. The disgust was evident on everyone else’s faces.  This is, unfortunately, a common reaction. Autistic activists are understandably upset by this, and while one would expect Autism Speaks to try to fight these negative stereotypes, they do the exact opposite. Autism Speaks supports every horrible stereotype about autistic people. In their videos, autism is spoken of as a monstrous disease that rips apart families. Autism Speaks puts great focus on “curing” autism, which reinforces another stereotype: that autistic people are unhappy. That they are suffering from some terrible disease like cancer that needs to be cured immediately. What they neglect to realize is that many autistic people are quite happy. The vast majority of autistic activists say they don’t want a cure, because they’re happy with who they are and they don’t need one. Autism Speaks is devoting part of its budget at fixing something that nobody asked them to fix. While they’re at it, they’re adding a sense of credibility to ludicrous claims about autism. Even if you are in favor of a cure, would it not be best to focus on living, breathing autistic individuals and “curing” them? Autism Speaks’ research funds primarily go to failed attempts at prevention, and little goes to researching cures for people already born. Neither autistic advocates against a cure, nor those in favor of a finding a cure, benefit. Another example of their warped thoughts on medical science is best articulated in the 2014 Joint Letter to the Sponsors of Autism Speaks by Autistic Advocacy. They wrote “the anti-vaccine sentiments of Autism Speaks’ founders have been well documented in the mainstream media. Several of Autism Speaks’ senior leaders have resigned or been fired after founders Bob and Suzanne Wright overruled Autism Speaks’ scientific leadership in order to advance the discredited idea that autism is the result of vaccinations.”

What might be the biggest issue with Autism Speaks is the fact that they don’t actually know or care about autistic people. Autism Speaks emphasizes the impact ASD has on non-autistic people instead of on the people who have it. As if the story of Alison Tepper Singer’s homicidal thoughts wasn’t bad enough, Autism Speaks just didn’t let up. In one of their most horrifying videos yet, entitled “I Want To Say,” Autism Speaks let parents talk about their struggles instead of those of their children. Being a parent to an autistic child can be difficult: it’s certainly frustrating seeing the judgment in other adults’ eyes, or trying to help your child communicate. What autism is like for someone without it isn’t the point, though. Autism Speaks’ focus should be on helping autistic people be heard. Yet, in “I Want To Say,” no autistic person gets their voice across. It is the parents who call their own children “wrong” and “sweet for an autistic child.” Not only are these statements insensitive to the autistic community as a whole, it shows a lack of compassion for their own children. Instead of loving them for who they are, these parents lament that their kids are “wrong.” One mother says she wishes she could give her kid a pill to change them, and another notes that her son is “sweet for an autistic child,” as if she expects children with ASD to be animalistic monsters. It is inconceivable to these adults, who clearly have no understanding of their own children, that they could be happy or accepting of themselves. To them, their kids are a burden with a “disease” in need of a cure. Autism Advocacy cites past instances where Autism Speaks “compared being autistic to being kidnapped, dying of a natural disaster, having a fatal disease.” Autism Speaks is just further advancing the woefully misguided idea that autism is a disease, and that non-autistic people are victims of autistic family members.

In a world where autistic people are murdered by their own loved ones simply for being autistic, there needs to be someone who speaks out in favor of change. There needs to be someone who provides real help to people who need it, and who supports people with ASD. Autism Speaks is not the entity that can achieve these things. No matter who you are, Autism Speaks isn’t helping you. Yet human compassion will still fuel people to donate to them. If you want to help, here are far better alternatives to Autism Speaks: Autistic Advocacy, Autism Network International, Autism Women’s Network, and Autism Society of America. These are organizations with histories of improving the lives of autistic individuals and their families. If you truly care about people with autism, you won’t support Autism Speaks.

 

Information gathered from: The Center for Disease Control (http://www.cdc.gov/ncbddd/autism/data.html), Autism Speaks (https://www.autismspeaks.org/sites/default/files/docs/final_autism_speaks_2014_28229.pdf), Battleground: The Media, Volume 1, A-N edited by Robin Andersen and Jonathan Gray, Autistic Advocacy (https://autisticadvocacy.org/wp-content/uploads/2012/05/Autism_Speaks_Flyer.pdf and http://autisticadvocacy.org/2014/01/2013-joint-letter-to-the-sponsors-of-autism-speaks/), Autism Parenting Magazine (http://www.autismparentingmagazine.com/issue-14-asd-options-living-independently/), The Huffington Post (http://www.huffingtonpost.com/nicole-jankowski/how-i-cured-the-autism-pr_b_6309054.html), and Autism Women’s Network (http://autismwomensnetwork.org/not-good-enough-autism-speaks/).

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