Kai Ryssdal: The annual meeting of the American Psychiatric Association winds down today. The main topic of conversation has been a new revision to the DSM: The Diagnostic and Statistical Manual. It’s pretty much the bible of psychiatric diagnoses, used for everything from insurance claims to accessing social services. And what those diagnoses are can mean access to tens or hundreds of thousands of dollars of social services. So what happens when — with especially subtle conditions like autism — the diagnosis changes? From the Marketplace Health Desk at WHYY in Philadelphia, Gregory Warner reports.
Gregory Warner: Susan Swedo is chair of the committee that’s spent the last five or so years tweaking the official definition of autism. On Sunday, she and I huddled in the back of a conference hall in Philadelphia. She was whispering to not disturb the other psychiatrists in the room. She says that the biggest change we’re going to see in the definition is this: Under the old criteria, even one symptom might have gotten you a diagnosis.
Sue Swedo: The old thing was, they don’t make eye gaze, they must have autism.
The new criteria will ask psychiatrists to do more than that. They’ll have to rank patients on a scale of severity for a range of factors, from social skills to repetitive behaviors to verbal abilities, so figure a child would get a different score if he can speak single words, or phrases, or full sentences.
Swedo: Our criteria are much more complex than the old ones. It provides a richer description of what you’re trying to get.
Geraldine Dawson of the advocacy group Autism Speaks agrees the new criteria are richer and more scientifically valid. But it’s not the science that parents are worried about.
Geraldine Dawson: If a family, for example, must now pay out of pocket for services that they used to receive because they qualified under a diagnosis? For early intervention, that’s going to cost them maybe $50,000 a year.
David Mandell is associate director of the Center for Autism Research at the Children’s Hospital of Philadelphia.
David Mandell: Um, I’m trying to think about the best way to say this. There used to be very few advantages associated with a diagnosis of autism.
But he says as families fought back and more research showed the benefits of early intervention, an autism diagnosis came to mean access to a better class of services. According to the folks at Autism Speaks, school districts spend an average of $20,000 per autistic child — three to five times more than they spend on kids in regular special ed.
Mandell: So if I have a kid with idiopathic intellectual disability, that is I don’t know the cause of the intellectual disability, I might try to get them diagnosed with autism in order to get them some of the services that are often available for those kids.
That kid may not qualify under the new criteria. But Sue Swedo wants to reassure parents that kids who are getting an accurate diagnosis will still be covered. She says in a recent study of 600 kids officially diagnosed at academic medical centers, just as many of them got the diagnosis of autism under the old criteria as under the new. In Philadelphia, I’m Gregory Warner for Marketplace.