UCSF Autism Expert Sees Decline in Hype and Hysteria

In the December 2004 issue of UCSF Magazine, Bryna Siegel, PhD, director of UCSF's acclaimed Autism Clinic and an author of several books on the mysterious disorder, described the thorny issues surrounding the diagnosis and treatment of autism and the snares into which parents of autistic children can slip as they whipsaw between guilt and grief.

In this May 2006 interview, Siegel explains the shifting landscape of the autism "debate."

Two years ago, we discussed the autism "epidemic." Is the number of cases still rising?

There is now a lot less certainty that the numbers are still rising. The overall rates in California seem to have stabilized and, in some places, actually fallen. All the talk about an epidemic has died down, too. And there definitely is a lot less hysteria about autism being a contagious disease.

What explains the comparative calm?

I think the new diagnostic standards for pediatricians that were introduced in 2002 have a lot to do with it. It takes time for doctors to learn the standards [and then apply them to the children they're seeing]. This could explain both the increase and the leveling off. Plus, the Institute of Medicine has issued yet another report that states there is no connection between immunization and the onset of autism. There is no "there there." I think more people are starting to believe that.

That said, what progress has there been toward understanding what causes autism?

It's generally understood that the causes are genetic. But I have no wonderful new theory [on causation] to report. There has been some more research done on a couple of genetic mutations - and what kind of environmental influences might be responsible for the mutations - but what stymies this research is the fact that no one has developed clinical correlates with the genetic mutations. What this means is that there are still no proven methods for connecting a genetic marker with a language problem or [an insistence on sameness] or any one of many other problems you see in children with autism. So there is a lot of effort, but it's not integrated yet.

It's a frustrating situation for parents. In your view, how are they reacting?

Parents need help, which is why I continue to see them push for having their children labeled autistic, rather than "disabled," because per-pupil expenditure in the schools is so much higher. But in general, the parents I see are a little less excited than they used to be and a little less likely to go onto the Internet and start brewing up formulas they think will cure their child of autism. The death of an autistic child at the hands of its parents, who were using chelation to cure him, may be one reason.