Autism: Epidemic or awareness?

At Discover's big-idea blog The Crux, Emily Willingham has a really interesting post about the prevalence of autism—is it actually increasing, or is this really about medical definitions and increased attention?

This is a topic we've talked about here on BoingBoing before, most recently back in March, when Steve Silberman offered some scientific evidence that suggests the ostensible increases in autism prevalence are "caused" by more accurate diagnosis.

But Willingham's piece adds a couple of new, interesting details to that still-emerging story. Being more aware of neurodiversity makes it look like there's more neurodiversity than there was before we were aware of it. And that was true even for the guy who invented the diagnosis of autism.

Leo Kanner first described autism almost 70 years ago, in 1944. Before that, autism didn’t exist as far as clinicians were concerned, and its official prevalence was, therefore, zero. There were, obviously, people with autism, but they were simply considered insane. Kanner himself noted in a 1965 paper that after he identified this entity, “almost overnight, the country seemed to be populated by a multitude of autistic children,” a trend that became noticeable in other countries, too, he said.

...by 1953, one autism expert was warning about the “abuse of the diagnosis of autism” because it “threatens to become a fashion.”

Read the rest of Willingham's piece, which includes a detailed look at several different studies that back up this view of autism with evidence. It looks like the majority of the "increase" in diagnoses can really be attributed to the process of diagnosis itself.

Image: 74/365 - autism awareness., a Creative Commons Attribution (2.0) image from macbeck's photostream

Autism: Awareness isn't enough

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