For a couple of decades now, Americans have been engaged in a wide-ranging and often heated conversation about autism. About what causes it, whether there's more of it than there used to be, and whether it can be cured. About whether autism is a disorder, a disability or a different way of being. About whether the condition is overdiagnosed or underdiagnosed, and which early interventions are most helpful for children.
All this talk is an improvement over the painful silence that prevailed through most of the 20th century, when psychiatrists wrongly blamed autism on "refrigerator mothers," making it a source of shame for families. But there's one way in which things haven't changed much: The people most often sidelined or excluded from the public discussion are autistic themselves. It is often assumed that the experts, or the parents of people on the autism spectrum, will do the talking in their stead.
Case in point: Autism Speaks, an organization that raises tens of millions of dollars each year by hosting walks and star-studded events like an annual concert in Hollywood called Light Up the Blues. The motto of Autism Speaks is
"It's time to listen," yet disability rights groups have accused the organization of refusing to do just that. See, for example, the Twitter hashtag #BoycottAutismSpeaks.
Imagine a world in which the leadership of the NAACP was all-white; now consider that not a single autistic person serves on the board of Autism Speaks. This absence makes itself felt.
As people on the spectrum have struggled to overcome years of stigma and negative stereotyping, the group has framed their condition in terrifying and dehumanizing terms. Its 2009 video "I Am Autism," which debuted at the United Nations, portrayed autism as a creepy stalker: "I know where you live, and guess what? I live there too. I hover around all of you… I work faster than pediatric AIDS, cancer and diabetes combined... I will plot to rob you of your children and your dreams."
The group's co-founders, former NBC Universal Chairman Bob Wright and his wife, Suzanne, have repeatedly referred to children on the spectrum (including their grandson, Christian) as "missing," as if they'd been kidnapped. The group's PR messaging has also reinforced the misconception that autism is a destroyer of marriages, though research shows that divorce rates are no higher for the parents of autistic kids.
But there's more at stake here than political correctness. As one of the largest private sponsors of autism research in the world, Autism Speaks helps set the global scientific agenda.
Founded in 2005 at the height of parental anxiety about vaccines, the organization 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.
In 2011, the organization launched an effort with the Beijing Genomics Institute to map the whole genomes of 10,000 individuals from families with two or more autistic children, at a cost of $50 million. Meanwhile, only a tiny fraction of the money raised on walks organized by Autism Speaks goes to ensuring that autistic people who have already been born will be able to live happy, healthy, secure and productive lives.
Autism Speaks' myopia is symptomatic of a larger problem in the United States. Less than 2% of the studies funded by the National Institutes of Health in 2010 were devoted to improving the lives of adults on the spectrum. The private funding allocated by groups like the Simons Foundation is similarly skewed. And the Government Accountability Office reported in June that funding for research on autistic adults actually declined between 2008 and 2012.
John Elder Robison, the autistic author of the bestselling autobiography "Look Me in the Eye" and an upcoming book, "Switched On," has criticized this imbalance.
"Two-thirds of the human lifespan is spent as an adult. With autism being a lifelong issue, we should be balancing our research accordingly," he writes. "The hundreds of millions we have spent on autism research in the past decade have had precious little beneficial effect on families and individuals living with autism today. We need to recognize that the job of research isn't done until autistic people are actually seeing a benefit."
Among the areas of research that are perpetually underfunded in the U.S., says disability rights advocate Lydia Brown, are ways of facilitating inclusive education, developing strategies for preparing autistic teenagers for the workforce, studying problems in sensory integration, helping autistic people to live more independently in their communities, improving access to healthcare, reducing discrimination in employment and housing, and ending the abuse of autistic people by their service providers.
Autistic activist Julia Bascom writes that people on the spectrum are no longer willing to be "spectators in their own stories." To coin a phrase, it really is time to listen.
Steve Silberman is the author of "NeuroTribes: The Legacy of Autism and the Future of Neurodiversity."