Lien: Autism Speaks Doesn’t Care About Autistic People


Emily Christensen

(Design by Emily Christensen | The Daily Utah Chronicle)

By Kayla Lien, Opinion Writer


You’ve seen the car decals of the blue puzzle piece. Every year there’s an influx of fundraisers and marathons, but they’re all for show. The organization Autism Speaks claims to seek the causes and different types of autism, lower the average age of diagnosis to two years, expand services for autistic people and enhance medical treatment of associated health conditions. Such flowery language covers up the atrocious and dehumanizing way this organization treats autistic people. Autism Speaks doesn’t care about the needs of autistic people and puts money back into their own pockets while demonizing neurodivergence.

As recently as 2016, Autism Speaks touted finding a “cure,” even stating it in their previous mission statement. Parents, be warned. There’s no cure for autism; it’s a lifelong condition that will not go away. The word “cure” has since been removed and replaced with “solutions.”

It gets worse. Autism Speaks continuously funds research seeking the causes of autism. Their MSSNG Project in particular warrants concern as a global database of over 10,000 genomes of autistic individuals and their family members. The project funds researchers to identify “autism genes” with the hope of developing a prenatal test for autism. Said DNA gets extracted and utilized without the child’s permission. In essence, Autism Speaks funds a new type of eugenics.

They also support Applied Behavioral Analysis (ABA) therapy, a form of “treatment” that focuses on reversing autistic behaviors. Not only does it not work for many autistic people, but it also creates traumatic experiences for many autistic children. ABA encourages masking — which teaches children to hide any autistic traits viewed as undesirable.

Further, the organization removes pieces of media and fundraising that they’ve received criticism for. One of the co-founders, Suzanne Wright, published multiple articles with outdated facts and blatantly incorrect information about autistic people. These articles have since mysteriously disappeared. Looking up “A Call to Action,” brings nothing but an error page on their website. They also removed a fundraising video titled “I Am Autism” due to the backlash it received. This video utilizes the personified voice of autism, who claims to “know where you live,” “work faster than pediatric AIDS, cancer and diabetes combined,” as well as destroy marriages and bankrupt families. This is all in the first minute of the four-minute video.

Autism Speaks raises fears about having an autistic child. In a video called “Autism Every Day,” (which has also disappeared from their site) parents talk about the difficulties of raising their children. Alison Singer, the former executive vice president of Autism Speaks, says she contemplated driving off a bridge with her daughter in the car, but didn’t because she has another neurotypical child. At this point, her autistic daughter sat in the room with her. Luckily, Singer has since resigned and has worked to rectify her actions.

Autism Speaks also partnered with Sesame Street to prepare a “100 Day Kit” for parents of newly diagnosed autistic children. It goes on to compare autism to leukemia, enforcing “mourning” as a normal response to learning of a diagnosis. This sort of rhetoric plants the idea that having an autistic child is the same as having a dead one.

For an organization so into “helping” autistic people, they don’t seem to ever consult autistic individuals. A staggering lack of autistic people sit on their Leadership Board, having only hired a handful of openly autistic individuals over the course of 17 years. Instead, most of their Leadership members represent big brand names. These include Soundcloud, New York Leasing, Goldman Sachs and Mastercard, among many others.

As Lydia Brown of Autistic Hoya states, “No reasonable person would dare suggest that an organization comprised entirely of men represents women’s interests or that an organization led entirely by white people represents the interests of people of color, yet the same standard evidently does not apply to disability organizations.”

Autism Speaks also raises a ridiculous amount of money. According to their fiscal report from 2018, 49% of their funds went towards “understanding and acceptance,” (read: promoting stigma and fundraising) while only 20% went towards services for autistic people and their families. They actively lobby against amendments that would help autistic individuals. In 2014, they heavily lobbied against an amendment to the Autism Cares Act. The amendment aimed to set policies in place for the inclusion of autistic people in policy and research decisions.

Autism has never been “on the rise.” It’s not a new thing, so why do big name organizations not handle it better? This organization and others like it perpetuate the idea that autism is scary, like a death sentence for your child. It causes fear and mistrust of autistic people, and actively inhibits equality for disabled individuals.

Public stigmatization of autistic people has led to tragedy. Back in 2020, a 13-year-old boy on the spectrum was shot by Salt Lake City police after his mother called for help transporting him to a hospital. Police shot the unarmed boy 11 times. In Massachusetts, police pinned a 10-year-old boy to the ground and kneeled on his neck and legs. In Louisiana, the cops killed an autistic 16-year-old by sitting and using a chokehold on him until he died. Violence against autistic people continues, and fear-mongering tactics help it along.

Autism Speaks constantly talks over autistic people and refuses to acknowledge their actions. Aside from dehumanizing autistic individuals, this organization treats neurodivergence as an epidemic and spreads misinformation to the general public. Autism Speaks doesn’t care about the needs of autistic people and actively works against self-advocacy, harming people in the process.

It’s time to let autistic people speak for themselves, instead of this large and money-hungry corporation.


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