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Professional Corner

The Autism Epidemic

This current controversy regarding the possible increase in Autism seems worthy of a re-print to bring it to a bigger audience. Each of the authors, in the following three commentaries, has their own bias. I do not know if the incidence of autism is increasing, but the number of children in my program with the diagnosis of autism has certainly increased. If you want to read the article from the Los Angeles times about this issue it follows these rebuttals.

On Thursday, April 29, 1999 a new report from the state Department f Developmental Services is triggering alarms about a huge and unexpected increase in autistic children in California.

Last year, 1,685 newly diagnosed autistic persons entered the state's regional center system. This number represents a 273 percent increase over an 11-year period, and a rise of 16.3 percent over the previous year. A diagnosis of autism is generally made when a child is between the ages of18 months and 4 years.

"The sheer complexity of this phenomenon prevents any clear conclusions,'' the report says. "What we do know is that the number of young children coming into the system each year is significantly greater than in the past, and that the demand for services to meet the needs of this special population will continue to grow."

In fact, autism appears to be the only disorder among the various developmental diagnostic categories that is on the upswing. Cerebral palsy, mental retardation and epilepsy have all remained essentially stable over the past 11 years.

"It's a dramatic report, but what's shocking is that it's not clear what the cause is," says Dr. Thomas Anders, a child psychiatrist and acting director of the newly established Medical Investigation of Neurological Disorders (MIND) Institute at University of California, Davis. MIND was launched in September to study autism as well as other neuro-developmental disorders.

May not be epidemic

"It doesn't necessarily mean there's an epidemic," Anders says. "It means that there's a huge increase in the number of reported and diagnosed cases." What that means is anyone's guess, he says. Autism has always been considered a rare disorder. Its rate of incidence in the United States is typically cited at 4.5 cases per every 10,000 live births. But in California, there is an incidence rate of about 15 to 20 per every 10,000 live births.

"I want to point out that this is a very conservative report," says Rick Rollens, a lobbyist, former secretary of the State Senate and father to Russell, an 8-year-old autistic boy. "It does not include people who are not part of the regional system, and it is estimated that (the regional system is) really serving only half the people with developmental disabilities," says Rollens, who asked the California legislature to commission the report last year.

"The truth is, we don't know for sure how many people are out there." Autism is a spectrum of developmental disorders, which can range from mild to extreme. It is characterized by obsessive spinning or repetitive motions, an inability to communicate with other people, and behavioral problems that are often self-destructive.

Despite an explosion in scientific research -- more than 10,000 journal articles have been published about autism in the past 20 years -- the disorder is poorly understood, and the cause remains unknown.

Pointing fingers

Geneticists have, not surprisingly, attributed autism to genetics. And depending on their focus of study, other researchers have blamed it on pollution, food additives, vaccines and the overuse of antibiotics. Still others say the increase simply reflects better diagnosis.

"It's not just California," notes Rollens. "Everywhere I go, around the country, around the world, you hear parents, professionals and educators saying, `Geez, we're getting overwhelmed with these kids.'"

In February, two federal agencies began investigating a so-called "autism cluster" in Brick Township, New Jersey. The Centers for Disease Control and the Agency for Toxic Substance and Disease Registry responded to local calls for investigation after it was discovered that the town had about 40cases among 6,000 children.

Not a unique cluster

Rollens suggests that this autism cluster is not unique to Brick Township. In his own suburban town of Granite Bay, about 30 miles east of Sacramento,22 of the 2,930 children enrolled in grades K-6 are autistic -- a ratio about 10 percent higher than in Brick Township.

In New Jersey parents have attributed the cases of autism to the water and to a nearby landfill, but federal investigators haven't identified any pollutants. In Granite, there seems to be nothing that would indicate a problem.

In response to the DDS findings, two California state senators -- Democrats Wesley Chesbro of Arcata and John Burton of San Francisco -- are now calling for an independent epidemiological study. "The system is getting seven new kids with autism seven days a week," says Chesbro. "Is this because of families coming to California for services? A change in diagnostic practices? Something environmental? We need to get to the bottom of this and we need to do it right."

No Epidemic of Autism

Edward R. Ritvo, MD Friday, April 30, 1999[Dr. Ritvo ([email protected]) is a well-known figure in the world of autism research and was an early critic of the works of Dr. Ivar Lovaas, also of UCLA -ls

THERE IS NO EPIDEMIC OF AUTISM! Rather my research efforts to identify mild forms of the disease which began in the 1970s is paying off. We now diagnose a spectrum of severity ranging from the "classical" Kanner description of the most sever cases to the mildest forms called "Asperger's Syndrome (all of which have "AUTISTIC DISORDER DSM IV).

Also, increased case finding is mainly due to: a) Our efforts to educate physicians and the public as to the nature of autism so that more accurate diagnoses are made and cases are identified. b) The availability of public agencies and schools to provide services in the community and thus keep tabs on newly - properly diagnosed cases. c) The closure of State and private "warehouses" where many were improperly diagnosed, and housed.

The prevalence figures that are emerging just now from California and Illinois are in line with recent figures from Japan and other countries that have recognized the existence of milder cases of autism for several years, Thus, the increased figures (up to 25 - 30/10,000) come as no surprise to those following the international epidemiological literature.

Edward R. Ritvo, MD, Professor Emeritus, UCLA Medical School

No Epidemic of Autism

Commentary Friday, April 30, 1999

From Catherine Johnson: Ed Ritvo diagnosed Jimmy, and was indeed (certainly as far as I know) the "discoverer" of married people with autism! He did the Utah epidemiological study which looked at every single child diagnosed with autism in the state of Utah---and in the course of this work found parents who fit the diagnostic criterion.

My understanding is that the California count only includes children with classic, severe autism, since the Regional Center will not "accept" kids with PDD-NOS, Asperger's, HFA, etc. The California count was of new cases to Regional Center.

I've e-mailed Ed to see whether he sees the report differently . . . His point that the diagnosis is being better made probably is true, however. I believe some of those in attendance at the CDC/NAAR conference made the point that *very* severe autism didn't used to be recognized as autism; the kids were simply seen as profoundly retarded, end of story. The consensus there was that kids were being under diagnosed at both the "low" *and* the "high" end of the spectrum.

BTW, I'm not taking a position here! I have no idea whether autism is rising or not.

-Catherine Johnson

From Lenny Schafer: FEAT

Those who have been ringing the "autism epidemic" alarm have hedged that improved diagnosis may indeed account for some of the higher numbers. But the growth is so exponential in scope, strong skepticism for resting the increase on this, and the other factors cited by Dr. Ritvo, is warranted. To the contrary of Dr. Ritvo assertions that doctors are that much more aware of autism, the experiences from parents with autistic children struggling to get a diagnosis has been that the medical profession has been, and still is quite ignorant of better diagnostic methods and of the effective interventions available over the last ten years. Who's anecdotal experiences do you trust? Dr. Ritvo's or the parent's? The point is we need better information (research) to make some hard decisions, which is what the bell-ringers are calling for.

With regards to "epidemic." The one in 312 ball park numbers we're seeing now, or just the rates of increase taken by themselves as reported by the DDS, is an epidemic in my book. No matter the reasons for this larger accounting: better diagnosis or suspected new toxins. And even if there is better diagnostic awareness as Dr. Rivto argues, doesn't mean there isn't an epidemic.-

The article that started it

See the Los Angeles Times article, California Cries "273% Increase in Autism -We Don't Know Why" Thursday, April 15, 1999

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