Redefining autism could leave patients without care
Posted January 20, 2012
Raleigh, N.C. — Changing the definition of autism could have unintended consequences for people in North Carolina and across the nation living with the disorder.
The New York Times reported this week that a new definition proposed by the American Psychiatric Association would narrow the criteria for the disorder, and potentially re-diagnose tens of thousands of people with related disorders, such as Asperger's Syndrome, in which patients have some of the same social struggles but don't meet the qualifications to be fully diagnosed with autism.
The changes are still in the drafting stage and could be nearly two years away, but there are already concerns.
Tracey Sheriff, chief executive officer of the Autism Society of Carolina, said Friday that thousands of people could potentially lose state-funded health, education and social services.
"We want people to live within their communities, in their homes, near their families, just like a life you and I have," he said.
Up to an estimated 60,000 people in the state are diagnosed with autism and autism-related disorders, according to the society. Removing that support, Sheriff said, could force many of those in need into state facilities.
"Regardless of what we call it, they have needs, and their needs have to be met somehow," said Nancy LaCross, whose 19-year-old son, Eric, requires in-home care.
Eric was diagnosed on the autism spectrum at age 10 with "pervasive developmental disorder, not otherwise specified" – also known as PDD-NOS.
"He wants to have friends desperately. He doesn't always know how to interact appropriately," she said.
Eric qualifies for state-funded services that help him become more independent and help him thrive socially and behaviorally in the community, at a potential job, in school or at home.
LaCross says that if he were to lose the critical service, she would not be able to work outside the home.
"Having a kid with a disability, we have a lot of unknowns already in life," she said. "Then, when something like this happens, it just makes you nervous."