Rochester, N.Y. - A new definition of autism has families concerned that their children could be pushed off the spectrum, limiting their access to vital services.
But at Golisano Children's Hospital, doctors and researchers believe the new definition is already misunderstood. "The goal with the diagnostic changes is to make the diagnosis clearer, but not to take services away from families," says Dr. Laura Silverman. More on that in a moment.
First, an explanation: An expert panel assigned by the American Psychiatric Association is creating a new definition for autism, which was last updated in 1994. Their new parameters remove some of the insistence on categorical definitions within the spectrum, such as as Asperger syndrome. By diagnosing cases in broad terms, service providers would be forced to look more individually at cases, rather than assume a certain type of case merits a certain type of approach.
"Autism is vastly different in each individual case," Dr. Silverman says. "It makes sense to look at who is getting what kind of service and why. The goal is to make it more transparent what kind of services people need and to make sure that the kids who get those services all have some similarities."
But an analysis of the new definition surfaced in the New York Times that indicated the new definition is likely to reduce the number of diagnosed cases. That story can be found here. At Golisano Children's Hospital, doctors believe that analysis relied too heavily on retrospective data and will ultimately be proven incorrect.
"I understand why it's confusing, and why parents are concerned," Dr. Silvernman says. "But we're optimistic that the diagnostic change will be successful."
We met Julie Wright, parent of 16-year-old Duncan, who has Asperger syndrome. Wright is also optimistic that the new definition won't push cases like Duncan's off the spectrum, but she'll be watching closely. "A lot of students -- especially kids on the high end of the spectrum -- don't look like they have anything going on," she explains. "So we need to remember that the autism spectrum is just that -- a spectrum."
Duncan was in sixth grade when he was diagnosed. He made the transition from a student who couldn't change tasks to a student who is thriving at the Norman Howard School in Henrietta. "I became more self aware and I could direct what my objectives were and just function in school," Duncan tells us. "I don't think I could succeed to the degree I do now without these services."
Upstate New York Families for Effective Autism Treatment released a statement on the proposed definitional change to autism, indicating that its members are concerned that the new defintiion will limit the services available to some families.
"This is an emotional issue for families, but we're trying to be objective about the new definition," Julie Wright says. "I just don't want to see people miss the chance to succeed the way my son has been able to succeed. And it's impacted me -- I was constantly exhausted, just trying to get him out of the house! Now he's doing so well. He's a success story."
