Posted: April 2, 2012
In 2007, the United Nations passed a resolution declaring April 2 World Autism Awareness Day
— an annual opportunity for fundraising organizations to bring public attention to a condition considered rare just a decade ago.
Now society is coming to understand that the broad spectrum of autism — as it’s currently defined, which will change
next year with the publication of the DSM-5 – isn’t rare after all
. In fact, “autism is common,” said Thomas Frieden, Director of the U.S. Centers for Disease Control and Prevention, last week in a press conference. The subject of the conference was a new CDC report, based on 2008 data
, that raised the official estimate of autism prevalence among children in the United States from 1 in 110 to 1 in 88.
The CDC’s announcement brought out the usual range of conflicting responses and disputes about causes
and cures. Mark Roithmayr, president of the fundraising organization Autism Speaks
, immediately branded the report proof of an “epidemic
,” though Frieden and other experts were careful to point out that the apparent increase was likely “the result of better detection
,” rather than a true spike in the population of autistic kids.
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.
No matter where you stand on the rising numbers, there is one undeniably shocking thing about them. 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. At the extreme end of the risks they face daily is bullying
, abuse, and violence, even in their own homes.