Who Speaks for Autism?

In recent months the outcry against Autism Speaks has grown louder and come from more varied quarters: individuals on the spectrum, as well as many parents, decry the organization's focus on "finding a cure." These neurodiversity activists want to move away from a paradigm that pathologizes autism. Other members of the autism community criticize Autism Speaks for including on their governing board only people who identify as non-autistic. Still others disagree with Autism Speaks' funding priorities. These people would like to see less emphasis on diagnostic tools and research into the causes of autism, and more money dedicated to integrating autistic people into their community so that they receive needed supports throughout their lifetime. Steve Silberman, author of Neurotribes: The Legacy of Autism and the Future of Neurodiversity, garnered attention for these complaints with an op-ed in the Los Angeles Times on August 24. He accuses Autism Speaks of framing autism "in terrifying and dehumanizing terms" and cites a 2009 video produced by the organization that "portrayed autism as a creepy stalker." He also complains that Autism Speaks "has lavished most of its funding on research uncovering prenatal risk factors for autism. It has not truly committed to serving the needs of autistic people and their families." The day after Silberman's op-ed was published, Autism Speaks responded on their website with a letter entitled "A Call for Unity." In it they attempt to rebut many of these criticisms: they do fund efforts to provide housing and job opportunities to adults with autism; they provide information to hundreds of thousands of families; their volunteers include people on the spectrum. Their main point though, seems to be that differences of opinion about how we think about autism, how we talk about autism, how we define progress, and who deserves membership in the autism community do not belong in a public forum. "Awareness and acceptance work hand-in-hand; unity in any cause will only make us stronger." In other words, keep quiet or you'll hurt the cause.

I agree with many of the criticisms of Autism Speaks and could add a few of my own.  "A Call for Unity" lists several programs designed to help adults with autism, but some simple math corroborates the charge that these programs represent a trivial portion of their budget. Moreover, the letter does not respond to criticisms about the composition of the board, presumably because they realize any effort at justification would fail to mollify their critics. The board's membership is exactly as the critics say. I might add that they only endorse one therapy for autistic children, ABA, and have encouraged insurers only to cover that approach. Also, they seem to monitor (read: censor) their social media to eliminate most dissenting opinions.

What I find most interesting, though, is the way their letter addresses Silberman's accusation that they view autism as "terrifying and dehumanizing." Nothing in the letter disputes that interpretation. A third of autistic people are non-verbal; half suffer from digestive problems; almost half are unsafe because they wander (I'm skeptical about that percentage); and a third have seizures. It seems that Autism Speaks does believe that autism is a scourge, and it seems that Autism Speaks does believe its main mission is to find ways to prevent and/or cure autism. While their letter insists they want unity, in fact they believe that autism is not a unified diagnosis and no, not all autism is a cause for celebration. The board member quoted in the letter explains, "Those who are least severely affected may just (italics mine) need an openness and understanding of the character traits that make them unique. Those who are more impacted by autism, like my son, may need therapies and hopefully a medical breakthrough that will come through scientific funding."

Is Autism Speaks' mission, wanting a medical breakthrough, so evil? Honestly, I've never met a parent of a child on the spectrum who never, not once, felt the same way. When my daughter was diagnosed almost fourteen years ago, I cried every day for a year. I felt like I had lost my child, I'd lost all of the fun experiences we were supposed to share, she had lost the right to build a meaningful life, and I had lost the possibility of ever being an empty-nester who would pursue more self-centered interests.

I am grateful for neurodiversity activists for challenging this package of beliefs. They model a reality very different from the one I forecast and very different from the one my daughter and I are experiencing. We do have fun together. She does have passions and connections that make her life meaningful.  Perhaps some day she'll be able to live independently, with support. I've started a business and this blog! I've made friends and developed compassion and humility in ways I never anticipated. Autism has turned out to be far different for my daughter than I anticipated. She is not "lost' to me. She is creative, observant and insightful in ways that are part and parcel of her autism. Those qualities would be lost if we suddenly made her brain neurotypical.

Still, I would never say that the hours of driving to speech therapy, occupational therapy, vision therapy, and social work were a "preferred activity." For her or me. Of course I want a society that provides these supports more readily, but if I could choose between easy access to therapies and not needing therapy, I'd likely choose the latter.

The point is, autism has turned out to be far different, and better, for my daughter than I anticipated, but I know children who are even more severely affected (dare I say impaired?). Their parents want to spend money on brain research that might help their children communicate, if only about the sensory experience that is so evidently distressing their bodies. But even better, they would like their children to be in less distress from the get-go.

It's true that Autism Speaks lies when they say they speak for people with autism. But parents are also part of the autism community and our voices also need to be part of the conversation. We want to do what's right. We do not know what "right" is. We need the freedom to question and process our own experience in order to figure it out.