Science writer Steve Silberman does an amazing job covering neurodiversity and the Autism community, so I've been waiting to get his take on the recent Centers for Disease Control data that found the rate of autism prevalence in the United States to be 1 in 88.
That prevalence rate has been on an upward trend for a while, and whenever the new stats come out (these are based on data from 2008), it triggers a shockwave of hand-wringing coverage that treats these figures as if they must be based on an increase in actual incidence of autism, as opposed to changes in diagnostic criteria and methods. This matters, Silberman writes, because the science seems to back up the idea that what we're actually seeing is better diagnosis.
That theory is bolstered by two recent studies in South Korea and the United Kingdom, which suggest that autism prevalence has always been much higher than the estimated 1-in-10,000 when the diagnostic criteria were much more narrow and exclusionary. What’s changed now is that — in addition to the radical broadening of the spectrum following the introduction of diagnostic subcategories like Asperger’s syndrome and PDD-NOS – clinicians, teachers, and parents have gotten much better at recognizing autism, particularly in very young children. That’s actually good news, because by identifying a child early, parents can engage the supports, therapies, modes of learning, and assistive technology that can help a kid express the fullest potential of their unique atypical mind.
The real problem, according to Silberman, isn't a mysterious increase in the number of children with autism. Instead, the problem is how we, as a society, treat those children once they are no longer children.
Once that 1-in-88 kid grows to adulthood, our society offers little to enable him or her to live a healthy, secure, independent, and productive life in their own community. When kids on the spectrum graduate from high school, they and their families are often cut adrift — left to fend for themselves in the face of dwindling social services and even less than the meager level of accommodations available to those with other disabilities.
Meanwhile, the lion’s share of the money raised by star-studded “awareness” campaigns goes into researching potential genetic and environmental risk factors — not to improving the quality of life for the millions of autistic adults who are already here, struggling to get by.
Instead, what people with autism really need is to be a part of their communities. That means acceptance of difference is more important than awareness of difference. It also means that respect, support, and inclusion are more important than frantic attempts to "cure" children who might not have anything really wrong with them.
Read the rest of Steve Silberman's story on autism awareness, autism acceptance, and what people with autism say they really want.
Image: Autism Awareness Ribbon, Colorful Puzzle Pieces, Free Creative Commons Public Domain Download, a Creative Commons Attribution (2.0) image from walkadog's photostream
Maggie Koerth-Baker is the science editor at BoingBoing.net. She writes a monthly column for The New York Times Magazine and is the author of Before the Lights Go Out, a book about electricity, infrastructure, and the future of energy. You can find Maggie on Twitter and Facebook.