Schafer Autism Report (Extra Edition) 11-20-02

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SCHAFER AUTISM REPORT "Healing Autism:

No Finer a Cause on the Planet"

EXTRA EDITION ________________________________________________________________

Wednesday, November 20, 2002

MEDIA ALERT

* CNN Has Major Piece on Autism Epidemic in California Today

Also: U.S. Aid Urged In Battling Autism -

State Can't Handle The Rise In Cases: Sacramento Bee

Parent Advocate For Autism Urged: Contra Costa Times

CNN Has Major Piece on Autism Epidemic in California Today 5pm est, 2pm pst

Today, Wednesday, November 20, there will be a major piece aired at 5:00pm est (2:00pm pst) on CNN. This piece will focus on news and testimony from yesterday's California State Assembly Committee on Health's hearing entitled "The Autism Epidemic in California". Congressman Dan Burton will also be featured. Currently CNN is heavily promoting the report that will air on Wolf Blitzer's program today. See story below for more details.

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U.S. Aid Urged In Battling Autism - State Can't Handle The Rise In Cases A State Assembly panel is told.

[By Aurelio Rojas in the Sacramento Bee.] http://www.sacbee.com/content/politics/story/5272239p-6277824c.html

A nearly threefold increase in autism cases in California is straining state resources and will require an infusion of federal funds for research and care, a legislative panel was told Tuesday.

The state Department of Developmental Services' caseload surged 273 percent from 1987 to 1998 and is continuing to grow by about nine cases a day -- a finding confirmed by a University of California, Davis, study that made headlines around the country last month.

Autism most commonly appears in children between the ages of 2 and 12. Experts say the state can expect to spend $2 million on each person afflicted with the disease during his or her lifetime.

"So it doesn't take a math wizard to determine that's $18 million a day (in new projected expenditures)," Rick Rollens, a board member of the Autism Society of America, told the Assembly Health Committee.

The brain disease leaves many patients unable to speak or compulsively performing repetitive motions, such as flapping their arms. Experts believe the disease has reached epidemic proportions nationwide, but California is the only state that has compiled comprehensive data.

Rollens, a former state Senate staff member who became an advocate after his son was diagnosed with the disease, said that until recently the National Institutes of Health was spending $5 million a year on autism research. He said the amount has increased to more than $55 million.

"(But) a multimillion-dollar effort is needed," said Rollens, who will meet with NIH officials in Washington on Friday to press his case.

Chuck Gardner, who also has a son with autism, testified that the disease is overwhelming the 21 regional centers in the state that diagnose developmental disorders and provide children with services.

Gardner co-founded the institute for the Medical Investigation of Neurodevelopmental Disorders at UC Davis Medical Center with Rollens. Funded primarily with state dollars, the institute will open a $42 million complex in Sacramento next spring to study and treat autism, dyslexia and other neurodevelopmental disorders.

"We need more funds for the MIND Institute, and not necessarily from the state," Gardner told the Assembly committee chaired by Dario Frommer, D-Los Angeles.

"Autism doesn't stop at the state line, and the work we're doing has national and international implications. It doesn't seem equitable that the state of California should bear the whole costs."

Dr. Robert Byrd, a pediatrician who was the lead author of the UC Davis study, told the panel the findings surprised researchers.

The study was prompted by a 1999 report by the Department of Developmental Services that concluded autism cases in California had increased from 2,778 in 1987 to 10,360 in 1998.

"It appears that we have numbers of children with autism that far exceed anything we have seen, and they continue to grow," Byrd said. "And we don't have a good explanation."

Byrd said most parents surveyed were similarly unsure of the cause, although some blamed genetic defects and a smaller segment "felt vaccinations had some role."

The number of vaccinations mandated for children under 2 has soared from eight to 26 during the past two decades. The measles, mumps and rubella vaccination, in particular, has drawn increasing concern.

Many parents have reported their child "regressed" into autism after a period of normal development, shortly after receiving the MMR vaccine. But most medical experts do not believe vaccines are to blame for the skyrocketing incidence of the disease.

Researchers at UC Davis are conducting a study in hopes of determining what role, if any, vaccines and environmental factors such as pesticides might have in the surge of cases.

Rollens is convinced that his 12-year-old son, Russell, is autistic because of an MMR vaccine he received. But he also believes there are other causes for the epidemic and says the federal government must step up its research efforts.

"If we keep adding nine kids a day (in California), we're going to break the bank," he said.

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Parent Advocate For Autism Urged

Assemblyman wants to cut confusing messages and 'buck passing' for families of such children

[By Sandy Kleffman in the Contra Costa Times.] http://www.bayarea.com/mld/cctimes/news/state/4562671.htm

Assemblyman Dario Frommer said Tuesday he will push to appoint an advocate for parents of autistic children and create a high-level state task force to improve coordination among agencies that provide services.

"It's very frustrating for parents going from agency to agency, place to place and not having someone to say, 'Here's how the pieces of the puzzle fit together and here's what you can do,'" he said.

Frommer, chairman of the Assembly Health Committee, made his remarks following a hearing in Sacramento on the state's rapid increase in autistic children.

The hearing brought together many of the experts at the forefront of the search to unlock the mystery behind the disorder.

Despite a projected $20 billion state budget shortfall next year, Frommer, D-Glendale, said he will introduce a resolution encouraging Gov. Gray Davis to aggressively seek federal funding and other means to ensure that ground-breaking research continues.

Rick Rollens, the father of an autistic child and a founder of the Medical Investigation of Neurodevelopmental Disorders Institute at UC Davis, argued that it will cost the state more in the long run if it cuts back on research now. He noted that the escalating number of autistic children costs taxpayers millions for a lifetime of care.

"You're seeing here today the cutting-edge research in autism in the world," he said.

Frommer said a parent advocate could be established at little cost by changing the focus of an existing state employee, who would attempt to reduce the "finger-pointing and buck-passing" among agencies that provide services.

The hearing came on the heels of a $1 million state-funded study by the M.I.N.D. Institute that concluded that the stunning increase in autistic children is a real phenomenon.

The study found that the increase cannot be explained away by changes in the definition of autism, by misclassification of children who used to be considered mentally retarded, or by people moving into the state to receive services.

The number of autistic children in the state jumped 273 percent between 1987 and 1998, and continues to rise. "We still don't know what's causing the increase," said pediatric epidemiologist Robert Byrd, the lead investigator on the study.

Robert Hendren, executive director of the M.I.N.D. Institute, noted that it may take three "hits" for a child to become autistic. Some children appear to have a genetic vulnerability, he said. The second "hit" may be some type of environmental toxin that pushes vulnerable children into full-blown autism. When such children are then removed from normal types of social interaction and do not receive early intervention, it may hasten their slide into autism.

To help discover whether there could be an environmental trigger, scientists have formed a Center for Children's Environmental Health and Disease Prevention Research at UC Davis. Director Isaac Pessah, an expert in cellular signaling, said there appear to be as many as 10 to 15 genes that make some children susceptible to autism.

Pessah and his team are measuring toxic compounds present in the blood of autistic and non-autistic children to determine whether such things as pesticides, toxicants on closed military bases, a mercury-containing preservative that used to be contained in immunizations, and other toxins in the environment could also play a role in autism by affecting a child's nervous system while the brain is developing.

One of the limits of the statistics and studies in California, Byrd said, is that they are drawn from a pool of autistic children who are signed up to receive services from regional centers operated by the state Department of Developmental Services.

Critics maintain that it is possible that more children also are registering for services from regional centers, without there being an overall increase in autistic children in the state.

To address this question, the state Department of Health Services in conjunction with Kaiser has launched a study of six Bay Area counties, including Contra Costa and Alameda. Researchers are attempting to identify all autistic children in the area, including those who receive services from private clinics.