The Oberlin Review

‘Autism Speaks’ Fails to Support Autistic People

Auden Granger, Production Editor

Hang on for a minute...we're trying to find some more stories you might like.


Email This Story






Welcome to April, the time of year that I have affectionately christened “Anger Month” and that others refer to as “Autism Awareness Month,” a project sponsored by the notoriously awful organization Autism Speaks. April is the month when a world that already characterizes autistic people as dangerous, incapable children musters all of its remaining ableist spirit to raise awareness of the perceived horrors of the disease.

But as in many of Autism Speaks’ efforts, awareness of autism comes at the cost of awareness of autistic people. The organization exists to profit on a fear of neurodivergency, throwing the lived experiences of autistic people to the wayside in favor of fearmongering and erasure.

The focus is on awareness, but awareness of the supposedly ugly, twisted, weird behaviors of the autistic, awareness of the heroism of parents and caregivers, and awareness of a movement that seeks to fit us like puzzle pieces into the structure of a neurotypical society. If we’re raising awareness of anything, let’s focus on what autistic adulthood can be in all of its variations and diversities, its comedies, tragedies and neutralities. Autistic people don’t just flicker out of existence at the cusp of adulthood. Autistic futures, autistic successes, autistic accomplishments and specifically autistic explorations of the world aren’t just pale or distorted versions of allistic (non-autistic) lives, and they deserve attention for more than just their capacity or incapacity to fit into a preconstructed puzzle.

Autism Speaks dehumanizes and stigmatizes autistic people while devoting only four percent of its annual budget to supporting actual autistic people. Even this funding is limited to “family services,” which reorients the focus from autistic people to so-called “autism parents,” who consider themselves — and are considered by wider society — to be mouthpieces for the community because autistic people are perceived as unable to speak for themselves. There are no autistic people on the staff of Autism Speaks, which devotes 44 percent of its budget to cure-oriented research but only .025 percent to the support of autistic adults. For the supporters of Autism Speaks, autism becomes something that must be eradicated, and autistic people are painted as nothing more than unfortunate and pitiable victims.

The overpowering narratives told by autism parents and Autism Speaks leave no room for the voices of actual autistic people who are working to combat both the pathologized image of an “autism epidemic” and the caretaker violence that Autism Speaks justifies when it sympathizes and supports parents who have seriously considered killing their autistic children. Self-acceptance and celebration are hard to find in a world that mourns the existence of autistic life, but the neurodivergency/ neurodiversity movement, embodied by The Autistic Self Advocacy Network and community unification efforts like #actuallyautistic and #REDInstead focus on breaking down ableist stigmas and negative media representations of autism and autistic people. Their message is simple: nothing about us without us.

Autistic kids grow up in a world that is constantly and explicitly telling them that they’re broken and wrong, pushing them towards social standards and presentations of self that are damaging and ingenuine and forcing abusive Applied Behavior Analysis therapies on them when they can’t fake typicality well enough, which stifle expressions of autistic behavior in severe and violent ways. Discussions about supporting autistic children rarely address this, but instead emphasize resources for parents. Autistic kids do need allies and support structures in tackling the obstacles of a world that so vehemently hates disabled people, but infantilization is not support; claiming voices is not support.

There are far more terrifying things in this world than the disabled body and mind. Flapping hands, stimming, echolalia and special interests are not obscene, and autistic people shouldn’t need to hide autistic traits to be considered capable of success. Autistic people are defined in terms of capacity to “function” in a neurotypically-structured world, but there are equally legitimate and valid social skills, body language and forms of communication that originate in neurodivergency. A true awareness of autism would require listening to that communication, verbal or nonverbal, typical or atypical.

Print Friendly, PDF & Email

Leave a Comment

Comments are closed.

Established 1874.