Concerns that the revised diagnostic criteria for autism will cause people to lose their diagnosis, and therefore supports, spurred the creation of an online petition that thousands signed.
Autism Rates Higher Than Ever
On the heels of CDC data that says that 1 in 88 kids has autism, one can understand why parents and disability advocates are concerned about the revised diagnostic criteria for autism. The DSM-V committee proposes that all diagnoses along the autistic spectrum, including Asperger's syndrome, be referred to as simply "autism spectrum disorder". A study by Yale university indicated that this could mean that people currently diagnosed with Asperger's or pervasive developmental disorder could lose their diagnosis, and therefore their supports. The American Psychiatric Association says that the Yale study is flawed, and that people don't need to worry.
Asking Tough Questions About Revised Diagnostic Criteria for Autism
Even if Yale's analysis is correct, I don't know that using the revised diagnostic criteria for autism will mean that people who already have a diagnosis will lose it. However, I do wonder if the revised diagnostic criteria for autism will mean that people who would have been diagnosed before May 2013, when the DSM-V is released, may not be diagnosed after May 2013. Not only would that be a very big deal for people and families that really do need support, it may change the 1 in 88 number that we are seeing today. It's an important number. Not because everyone who has it has an incredible uncomfortable life (see http://www.girlwiththecane.com/category/running_stories/dsm-v-changes-to-autism-criteria/), but because some people with autism live with a very limited ability to interact with the world and with those who love them...and wouldn't it be nice if research provided them with ways to do that?
Shame on Research Funders
I remember reading a quote somewhere once, when autism rates were much lower and only the forms that made people very trapped in their own minds were generally recognized, that if one in whatever the prevalence was at that point children were being kidnapped, it would be a national emergency (implying that these children with severe autism were, in a way, being kidnapped and held from loving participation with their families by the severity of their diagnosis.) We know now that autism is not that severe for all people. However, it's just amazing to me that the only way the autism rates may possibly drop is to fiddle with the autism diagnostic criteria in a way that may change the number of diagnoses.
But...hopefully my fears will be unfounded and all people with autism will continue to get whatever support they need.
What do you think will happen?
More about this story: http://www.disabilityscoop.com/2012/03/28/dsm-standing-firm-autism/15266/