Autism Speaks silences and stigmatizes people with autism

| Senior Forum Editor

April is Autism Awareness/Acceptance Month, as you’ve likely seen somewhere in the wondrous land of social media. Since we are right in the midst of April, it’s a good time to look at what (good) awareness means, and why acceptance is an essential accompaniment to it.

It’s also a pretty good time to point out that one of the most vocal organizations for people with autism really doesn’t do much for them at all. I’m looking at you, Autism Speaks, because your attempts at awareness result in fear mongering, misinformation and your efforts toward acceptance are difficult to even discover.

The first thing we should tackle here is the difference between autism awareness and autism acceptance, and whether Autism Speaks accurately advocates for either. Awareness is a crucial step toward healthy advocacy, so I’m first going to break down what exactly autism is and whether Autism Speaks is good at raising awareness.

Autism is not a single disorder. It’s now officially called Autism Spectrum Disorder, or ASD, which is the DSM-5’s attempt to umbrella an incredibly wide variety of challenges, strengths and needs that a person with autism can have. And it is a wide variety—autism does not manifest in the same way from person to person.

For this reason, it’s difficult to identify what exactly autism “looks like” because it can look so different. Generally, people with autism may have trouble communicating with others—this difficulty has a wide range of manifestations in itself, though, because “difficulty communicating” could mean the absence of any verbal communication or simply difficulty recognizing when people are being sarcastic. People with autism may have some repetitive behaviors (like hand flapping), or they may not. They may have narrow but incredibly focused interests (watching and memorizing every line from every “Star Wars” movie, for example), or they may not.

It is easy, however, to identify what exactly autism is not. Autism, for instance, is not a disease. It’s not a death sentence. It’s not some terrible thief in the night coming to steal the neurotypicality that, apparently, is essential to one’s “completeness.” So how is it that such a widely viewed organization like Autism Speaks fails—or has failed in the recent past—to separate such stigmatizing attitudes from their conception of “autism awareness”?

Autism Speaks seems to think that autism awareness is synonymous with fear mongering and dehumanization—the organization uses rhetoric surrounding the apparently soul-crushing tragedy that is autism to essentially drown out the voices of people who have it. For instance, up until recently, Autism Speaks spoke explicitly of autism as a “disease.” In a speech given by co-founder Susan Wright as recently as 2013, she explicitly defines autism as synonymous with terror and despair, reiterating the phrase “this is autism” in between asserting that families with children with autism “are not living” and comparing autism to a massive physical disappearance of children, a fatal global health crisis.

To Wright’s credit, I imagine that many parents feel the sort of fear she describes in her 2013 address. It must be incredibly hard to watch your child live in a neurotypical-centric world that is often so determined to see them fail. But the horrors that Wright describes explicitly as autism are not autism.

Autism Speaks’ conception of awareness rests in the fear of the parents and family while blatantly ignoring the voices of those who actually have autism. The organization’s choice to emphasize autism over the individual, as a “global health crisis,” dehumanizes those who have autism. Dehumanizing the individual makes it easier to silence them, something that Autism Speaks does an excellent job of displaying through its rhetoric. Worse is that an organization called “Autism Speaks” does not, and has never had, a single person with autism speaking on its Board of Directors. Unless you count that time they tried to get a “token autistic” on staff, but the individual in question certainly doesn’t seem to count that.

Autism Speaks, technically, does spread “awareness” of autism, but its continued misinformation and insistent silencing of individuals with autism works counterproductive to that intention. Above all, it is important to keep in mind not only accurate awareness—recognizing what autism is and what it is not, and resisting the urge to conflate one manifestation of autism with all—but acceptance.

Acceptance means recognizing that individuals with autism are not “diseased,” they are not lost nor some sort of incomplete puzzle. Acceptance means recognizing that pushing silence on a non-silent population is not “speaking” for them. When you start moving toward Autism Acceptance, as many have advocated for, Autism Speaks clearly fails dramatically.

The purpose of this article isn’t to needlessly complain about the rhetoric of an organization, but to shed some light on why the loudest voices are not always representative—especially when those voices actively exclude those who can speak to personal experience. The issues I raise with Autism Speaks are not comprehensive, and do not include the sketchiness of their fund allocations nor the unbelievable video they released in 2009.

Much of what I have said was first articulated by people with autism, people who have continually stressed that Autism Speaks does not speak for them. As John Elder Robinson, the only individual with autism to ever hold a remotely high position in the Autism Speaks organization, wrote of his decision to leave its Science and Treatment Board, “We do not like hearing that we are defective or diseased. We do not like hearing that we are part of an epidemic. We are not problems for our parents or society, or genes to be eliminated. We are people.”

They speak for themselves, and they’re the ones we should be listening to.

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