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Max Dycus, 7, with his mother, Melinda Lee, in San Francisco. Max has been diagnosed with autism.
Autism Alert
A dramatic increase in autism cases is reported in California. What does it mean?

AUTISM IS A DISORDER that strikes boys three to four times more often than girls. People who have it often have trouble communicating, have difficulty in forming social relationships, and engage in repetitive and other obsessive behaviors. Symptoms often appear in early childhood—although sometimes the disorder is not immediately diagnosed—and can range from mild to severe.

It is not known if cases are increasing at a similar rate throughout the country; studies by the Centers for Disease Control and Prevention are underway in several states. Dr. Ron Huff, senior psychologist in California’s Department of Developmental Services, spoke to NEWSWEEK’s Laura Fording about the increase and what’s being done in response.

NEWSWEEK: Give us a little more background on your report.

Dr. Ron Huff

Dr. Ron Huff: We have 21 regional centers that provide services for four types of disabilities—mental retardation, epilepsy, cerebral palsy and autism. In the mid ’90s, the number of people coming to us with diagnoses of autism seemed to be increasing significantly. The first report we did in 1999 showed about a 273 percent increase in the period between 1987 through 1998. More recently we thought we’d take a look at the number again. This report is not an epidemiologic study. We simply sought to count the actual number of people who are receiving services in our system. It may not be 100 percent of everybody who has this disorder.

The study states that “the increased prevalence of autism in California is valid and is driven by factors beyond improved identification and diagnosis.” Can you explain?

The sheer increase in the number of children with autism has precipitated more people knowing about the service and asking for it. And a portion could also be attributed to better diagnostic methodology. But at least one formal epidemiologic study, completed in the fall of 2002, confirms [an increase in occurrence]. The Centers for Disease Control and Prevention also just published a study in 2002 involving several counties around Atlanta that shows rates equal to or slightly higher than our rates here in California. And that was a formally conducted study.

After holding steady in the 1970s, the number of autism cases you reported increased in the 1980s and then climbed even more dramatically in the 1990s. Do you have an explanation?

No. But our department, under a program called the Autism Initiative, is now supporting a study, out of the M.I.N.D. Institute [at the University of California at Davis] that is looking into the possibility that this increase can be attributed to vulnerable genes coming into contact with environmental factors.

Can you explain?

The top theory is the that some people carry what has been loosely referred to as vulnerable genes that can be influenced by some form of biochemical change, which could come in the form of a virus or an environmental toxin or from some external source. This may change the gene slightly. Then, as genes produce proteins that go into the makeup of the brain, the brain’s structure is altered. We certainly have evidence that the brains of children with autism are altered. The effort now is to try to track down about 20 suspect chemicals.

Any comment about the theory that the increase in autism may be attributed to certain vaccinations?

Enough attention has been attracted to this issue that independent research is under way. We probably won’t have answers [from those studies] for another couple of years.

There seem to be more varieties of autism now.

There has been discussion about this. There have been hints—but no evidence that I’m aware of—that there may be more types than those already documented. There’s autistic disorder, the classic version, discovered in the early 1940s. Asperger disorder was known many years ago, but awareness of it among diagnosticians in the United States increased significantly in the early ’90s and the number of people with Aspergers has increased because of diagnosis. Then there are other forms of autism that don’t fit cleanly into any classification. As these are examined, the question is whether we’ll see any other subtle forms. I think it will be several years before we understand this well enough to know exactly what’s going on.

Are methods for treating autism changing?

We have a lot of advanced teaching methodologies available to us today. The issue is more about getting enough qualified professionals trained to accommodate the large numbers of kids who now need the treatment.

Is this disorder ever treated with medication?

If there are co-existing disorders like sleep disorders or seizure disorders or problems with the immune system, or with gastroenterology, they may need to be treated with medications. And if there are problems with excessive hyperactivity, sometimes medications are used to control it. We are learning more each day about how medication can be used to help put the child in the best possible position to learn effectively and to keep their families from being overwhelmed and exhausted.

Is the incidence of autism increasing worldwide?

I think the general sense is that it is. Unfortunately only some countries have the mechanisms in place to capture the number of kids who are receiving an autism diagnosis.

In your report, those who show little or no mental retardation rose from about 19 percent of total cases in 1987 to roughly 56 percent in 2002. Any explanation?

Not yet. One reason we put that chart into the report is to stimulate the kind of research necessary to formally determine this.

It also shows that more and more kids with autism are living at home now instead of in residences.

We are fortunate to have an excellent system of services and we can provide more support to families so that they can keep their children at home for longer periods of time. Although there are still very serious problems, it’s possible now for autistic children to participate and interact within the family especially if they receive early intervention programming. In fact, all of these kids [we deal with] are enrolled in a public school program, unless their parents opt to have them in a private school. The public schools have done an excellent job in California of providing services for these children. But it has been a mad dash to keep ahead of the growing number who are diagnosed with autism. The purpose of this report is not to alarm anyone but to give the people who do public policy planning and those who plan educational and service programs an idea of what to expect. They need to be planning five or ten years down the road. We are adding about 3,000 kids a year. That’s a lot of kids. Especially because they require such intensive and highly coordinated treatment programs.

Have you seen any differences in rates of increase along demographic lines?

You may have noticed [in the report] an increase among Asians and Hispanics over a large span of time, but that could be simply due to increases in population. The problem is that those are raw numbers. But our department, under the Autism Initiative, is supporting another study to look at this because we’ve had anecdotal reports of hot spots around the state.

Where were they?

So many have been reported. We know now that about 1 in 323 kids is going to be diagnosed with autism. That means it’s more likely that people know someone who has a child with this disorder. That did not exist 20 years ago. So people are reporting that they think their community is a hot spot when it’s not necessarily so.

How are California public health officials reacting to your report?

With concern and renewed commitment. We have begun collaborations with the California Department of Education because the impact will be as much on them as it is with us. We have hope that eventually these numbers will go down. But if they continue to increase, we are reaching out to these other health agencies to begin to plan right now how to respond.

© 2003 Newsweek, Inc.