Autism Speaks: An Epidemic of Ableism

Trigger Warning: ableism, eugenics, and Autism Speaks

“This is generations of children to come that will be diagnosed with autism, and we as a country, and as a world, we have to stop.”

Those were the words spoken by Autism Speaks co-founder, Suzanne Wright, during an interview in Nantucket on August 14, 2013. That very statement sums up a deep-rooted hatred for a group of vulnerable people. Replace the word autism with gay, black, or deaf, and the organization would be condemned by the majority of people. This is the same organization where their former executive vice president talked about the thought of murdering her own child while they were in the same room. Based on their history, Autism Speaks seems to envision a world where autistic people no longer exist.

Suzanne Wright never did achieve her dream of curing autism before her passing in 2016. The fear of a potential attack toward the autistic population such as a prenatal test still lingers, as the MSSNG project has shown no signs of slowing down. MSSNG is a database compiling 10,000 genomes of autistic people and their families that utilizes Google’s cloud software throughout different labs across the world. It’s a collaborative effort between those scientists to, “lead to breakthroughs in identifying the causes and subtypes of autism, as well as advancing the diagnosis and personalized treatment of the disorder,” as Autism Speaks said.

While an ambitious effort, such an idea can be incredibly problematic because it can potentially give scientists unprecedented power to find ways of eliminating autistic people from being born, if they choose. A prenatal test for Down’s syndrome already exists, in which 100% of babies with the condition were aborted between 2008-2012 in Iceland. Having a prenatal test exist for disabilities such as Down’s syndrome and autism subliminally gives society the message that disabled people are undesirable and should not exist. A prenatal test for babies with a life-threatening heart condition or something deadly could certainly be beneficial so parents can prepare. But since Down’s syndrome and autism does not kill the person nor anyone around them, the only reason people would want to have such a test exist is out of ableism and quite possibly eugenics.

While parents should be prepared for a child that is disabled, the best way to do that would be by giving resources that will help the child thrive, rather than encouraging them to “mourn” the existence of their child such as that in Autism Speaks’ 100 Day Kit. Of course, integrating autistic people into the community and teaching young children in school to embrace autistic people would be a great start, as opposed to fearing them. Autistic behaviors can be difficult for people to understand at first, which is why education (through a compassionate, non-biased approach) is the key.

Despite how grim Suzanne Wright’s words were in that interview alone, her husband and the other co-founder, Bob, had his own equally harmful focus on the matter. “They do that because they see that the productivity loss here is significant,” Wright said. “If you’re going to lose one to two percent of your male population to autism, that means they’re not going to be productive. And that means part of your population is not only not productive, but they have to be cared for.”

That raises the question: what’s wrong with not working and having to be cared for? For societies to thrive, we have to take care of our most vulnerable people. Many autistic people are quite eager to work, but due to inherent bias and discrimination, they are not afforded those options because of an ableist workforce. Nonprofits such as Popcorn for the People display the eagerness of autistic workers in spades, but until businesses find a system to include autistic people among their employees (being paid a wage where they can live independently, which should apply to all other workers too), the population will suffer. And if companies do formulate such a system, the unproductivity that Bob Wright fears will be remedied, and autistic people would be paid, so everyone would benefit in some way in the end.

While social skills can be challenging for many on the spectrum, that does not mean they should be deprived of opportunities to work. If an autistic person chooses to be a cashier, for example, then perhaps a sign on a storefront window could display that the business in question hires autistic people. They could then lay out a list of things customers should expect from the autistic person tending the register. Not only would that help the company by showing that they are inclusive to hire autistic people, but it could also integrate autistic people in the community and teach customers how to better understand them by putting them together in the same environment. Such ideas of integration do not require reforming the system we live in entirely. All it takes are some subtle changes to the environment, as well as changes in perspective and attitude.

Since the video that this article responds to is an hour long, another section to unpack and discuss are the commercials sandwiched between each interview. One that undoubtedly stands out is the one featuring Mattias Hildebrand, who is the grandson of Bob and Suzanne. He is also the brother of Christian, who was the one that inspired the Wrights to found Autism Speaks after he was diagnosed as autistic (technically labelled under PDD-NOS, as stated by Bob Wright). The commercial showcases Mattias’ experience living with Christian while he narrates. Mattias’ tale is told through animation rather reminiscent of a cross between children’s drawings and an indie rock music video. It’s visually beautiful. However, the boy’s portrayal of Christian is what forces the overall message to juxtapose with the lush and whimsical art style.

He starts out talking about his love for Christian’s sense of humor and their time of diving together. It gives the viewer a sense of warmth at first. But then the video takes a sudden left turn when Mattias says, “it’s hard for him to talk, and when it does, it’s just… not right.” Christian has high-support needs and is nonspeaking, but just because he can’t speak in the way neurotypicals may expect does not inherently make his method of communication “not right.” There is no true correct way to communicate, as iPads and facilitated communication has opened amazing opportunities for nonspeaking autistics for years. Those words are not Mattias’ fault since he was so young, but if his grandparents taught him that it’s okay to embrace differences, it’s perhaps probable that his narration would carry a different tone.

After that, he then talks about how Christian cries in his bedroom, where Mattias states that, “it’s one of the times that it’s hard to have a brother with autism.” While it can be difficult to live with a high-support needs family member if the correct resources are not available or provided to the family, Christian’s nights of crying are private and not something any child would want their relatives talking about; it’s even more exploitative for the person in question when said private moments are included in an animated video produced for a mass audience.

A commercial included in the video which pales the previous one is a montage showcasing Autism Speaks’ accomplishments through their famous/infamous “Light it Up Blue” campaign. While it has the usual sensational elements a promotional video of a charity of similar size and scope would have, it quite subtly takes a sinister turn. After showing how much reach the campaign achieved across the world in different landmarks, the narrator mentions a $100 million brain science initiative brought forth by the Obama administration. The narrator then states that it aims, “to help researchers find new ways to treat, cure, and potentially prevent brain disorders such as autism.” She says all this without breaking stride while a children’s chorus sings the words “light it up blue” unendingly in the background. It can be easy to miss the quote, but when one does hear it, it can send chills down the spines of any autistics. It’s an alarming example of a video promoting the prevention of an entire group of people from existing while using imagery of people smiling and children cheerily singing.

Based on research of Autism Speaks’ materials, a common thread that the organization seems to focus on most is the high-support needs autistics. Many of those people have medical conditions such as seizures and gastrointestinal issues, which should undoubtedly be treated. With that said, there is a difference between treating things that would harm or kill a person if left untreated and preventing that person from existing entirely. Autism cannot be separated from a person, as it is the way a person’s brain is wired and forms the basis of their movements, thoughts, feelings, and everything else. If you remove the autism, you have nothing left. If anything, you would have a completely different person inhabiting that person’s body.

The thing is, when you talk about preventing autism, that includes the low-support needs autistics too. Autistics, no matter how their traits manifest, are deserving of the same amount of dignity and respect. For an organization to suggest that such a group of people should be prevented from existing is simply damning and warrants drastic changes to the society we live in. As long as such an attitude toward developmental disabilities is normalized, then the futures of the autistic population in the next century will hang in the balance.