An Autistic Speaks

By Cody Boisclair

You’ve probably seen its public service announcements on TV or heard them on the radio: “The odds of some random occurrence happening are one in some ridiculously large number. The odds of a child being diagnosed with autism: one in 166.” You might have even seen one of its representatives interviewed on talk shows such as “Larry King Live” and “Oprah.” If you’ve visited a Toys ‘R Us store lately, you might have even seen one of this organization’s fundraising drives.

The organization in question is Autism Speaks, a non-profit group which, on its surface, sounds quite benevolent; the name practically suggests an advocate who will stand up for the needs of autistics. The truth about that organization, however, is somewhat less amiable toward autistics.

Autistic advocates have made their opinions quite clear as to what they, as autistics, would benefit from. Though all sorts of services and support can be found for autistic children, the same is not true for autistic adults. Autistic advocate Joel Smith observes that “a lot of other adults have spoken about the sad lack of reasonable services for adult autistics. … once we become adults, we need access to resources to help us heal, and to keep us safe. And, sadly, these resources aren’t usually part of autism support typically.” Autistics also cry out for acceptance, a desire to be treated as equals while autistic instead of transformed into someone who’s not autistic. Another well-known autistic blogger, Amanda Baggs, compares this desire quite reasonably to “a cat, faced with becoming a dog … saying I want to grow as a cat, not a dog.” As Smith further elaborates, this is not a rejection of support, not a wish to have autism ignored rather than treated — merely a wish to be treated with respect as autistics, in a manner “that uses an autistic person’s strengths and is aware of an autistic’s weaknesses.”

Yet these very advocates, despite the clarity of their message, are completely ignored by Autism Speaks. Their mission statement, in fact, openly states that the organization’s goal is “facilitating global research into the causes, treatments, and an eventual cure for autism” — precisely the sort of thing that autistics, even those on the “lower-functioning” end of the autism spectrum, are understandably worried about.

The issue of cure versus acceptance, however, is not all that concerns autistics about Autism Speaks. Even beyond that particular issue, Autism Speaks seems to show little concern for the opinions of autistics.

Imagine, if you will, the sort of reaction the National Organization for Women would get if its leadership were made up entirely of men, or that the National Association for the Advancement of Colored People would get if it were made up of white folks. It’s an utterly absurd thought, isn’t it? How is it, then, that Autism Speaks can continue not to even have a token autistic on its board of directors or anywhere else in its leadership, much less an autistic member in any sort of significant role, to provide any sort of oversight?

Several years ago, Autism Speaks commissioned a short film entitled “Autism Every Day,” supposedly a glimpse into the lives of several parents of autistic children. Aside from the fact that, as columnist Jennifer Liss explains, the filmmakers encouraged the film’s subjects to set up a worst-case scenario, there’s a particularly bothersome scene in which one mother, Alison Tepper-Singer, describes the extent of her frustration at the school system’s services for autistic children. To quote Singer: “I remember that was a very scary moment for me when I realized that I had sat in the car for about 15 minutes and actually contemplated putting [autistic daughter] Jodie in the car and driving off the George Washington Bridge and that that would be preferable to having to put her in one of these schools. And it’s only because of Lauren, the fact that I have another child that I probably didn’t do it.”

Even that statement might be somewhat excusable, were it not for the environment that it was delivered in. Just prior to Singer’s confession of having wanted to drive off a bridge, Jodie is shown coming up to her mother, hugging her, and asking her what she’s doing — clearly demonstrating that Jodie has the ability to use and understand language. Yet even in spite of this sign of understanding, Singer describes the bridge scenario while her autistic daughter stands mere feet away from her in the room. Such an action demonstrates a lack of understanding of the capability of autistic minds on anyone’s part, but it’s particularly unbelievable given that Singer is a vice president of Autism Speaks.

Even more recently, Autism Speaks’ staff stumbled across a parody web site known as “NT Speaks” (where “NT” stands for “neurotypical,” i.e., not autistic). This parody, created by a teenage autistic, was designed to illustrate how offensive autistics find Autism Speaks’ view of autism as a disease to be cured, by turning it around and applying the same rhetoric to non-autistics. Did Autism Speaks take a cue from that and finally, after years of ignoring autistics, try to present a more autistic-friendly stance? Did they contact the author to get a better understanding of her concerns? No; instead, as New Scientist describes, they sent a cease-and-desist notice for copyright violation, only backing down when they discovered that the defendant was a mere teenager.

In short, the battle between autistics and Autism Speaks is a classic case of identity politics, and one with precedents. Many have compared autistics’ push for acceptance and understanding to the gay rights movement; in fact, homosexuality was once listed in the American Psychological Association’s Diagnostic and Statistical Manual, much as autistic spectrum disorders are today. Is it possible that one day, autism, too, may be recognized as simply another way of existence?

If such events do transpire, I, for one, will be very happy, as this is a battle in which I’m fighting on the frontlines. You see, I myself have a diagnosis of Asperger’s Syndrome, a neurological condition on the autistic spectrum. And though my life can be stressful at times with this condition, I am who I am — and I just wouldn’t be me any other way.