In last Friday's New York Times, Ben Carey reported intense public reaction to the new DSM 5 concept of autism. "Proposed changes in the definition of autism would sharply reduce the skyrocketing rate at which the disorder is diagnosed and might make it harder for many people who would no longer meet the criteria to get health, educational and social services."
Rates of autism have multiplied remarkably in the past fifteen years -- going from the very rare (less than one in two thousand) to the pretty common (more than one in a hundred). The term used to be reserved only for children with really incapacitating difficulties in language, social relationships, behaviors, and usually low IQ. The autism spectrum has recently broadened to capture a heterogeneous group of kids who have much milder social and behavioral problems, normal speech, and normal (or even high) IQ. So, the explosion of autism doesn't mean that kids have suddenly gotten more autistic -- rather the diagnostic label is being applied more loosely and inclusively.
The possible DSM 5 return to a narrower definition has created an uproar and caused a sharp division of opinion among advocates. Some of the disagreement concerns how the DSM 5 proposal may affect stigma and self concept -- e.g. a wider definition can be seen as either stigmatizing or normalizing depending on your point of view. But the major opposition arises from the fact that extra school, mental health, and other special services often require that the child have a diagnosis of autism. Autism has quadrupled in schools at least in part because it has become an eligibility prerequisite for expensive and individualized programs that would otherwise not be available. And the majority of states also require insurance companies to provide special mental health services for those having the diagnosis.
Parents understandably worry that any narrowing of the autistic spectrum will threaten their children's eligibility for much needed services. A campaign has therefore been launched to lobby DSM 5 to keep a broad spectrum concept of autism.
But the issue is complex and divisive. A follow up article in Saturday's New York Times reported a wide range of parent reaction, including many who expressed opposition to the current loose definition. This comes from both sides of the autism spectrum. Some parents with severely ill and classically autistic kids worry that the broadened spectrum diverts resources toward the less affected and away from those most in need. And some parents worry about the stigmatizing effect of over diagnosis in children with less severe problems- rather than a diagnostic label, they would prefer acceptance that is normal to be different.
What to make of this sharp division of opinion and how to resolve it? I think the fundamental problem is the excessively close linkage of services to a required DSM diagnosis of autism. The DSM has been given an authority in determining school decisions that it simply does not deserve. And in turn, requiring a DSM diagnosis for service decisions has resulted in rampant diagnostic inflation.
My proposed solution is based on two assumptions :1) that diagnostic accuracy and clarity requires a narrower definition and more precise diagnosis of autism; but, 2) that the kids being currently misdiagnosed as autistic most often probably do need help and should not lose services just because their difficulties do not fit closely within the DSM definition.
Severe, classic autism is clearly defined and absolutely unmistakable. But, at the milder end of its spectrum, autism has inherently fuzzy boundaries merging imperceptibly into many other childhood mental heath, behavioral, and learning problems and is also difficult to distinguish from the individual differences that are a normal and (even desirable) result of human variability. The sudden increase in rates of autism thus comes from the vagueness and easy elasticity of its definition at the milder boundaries of its spectrum. The pressure for services naturally stretches the boundary to include children with a heterogeneous array of problems that place them in vaguely defined territory, further and further away from classic autism. Any effort toward a more precise definition will narrow the spectrum and therefore seem to threaten the services that have been tied to the diagnosis.
So how can we accomplish both important goals -- i.e. achieve a more precise diagnosis of autism AND not deprive services for those who need them? I think the best solution is to decouple school services from the DSM diagnosis of autism. Instead of DSM diagnosis, the child's specific learning and behavioral problems should guide eligibility and individualized planning.
Children who now get inappropriately labeled autistic should lose the inaccurate diagnosis, but not lose the needed services.
Allen Frances is a professor emeritus at Duke University and was the chairman of the DSM-IV task force.