SCHAFER AUTISM REPORT "Healing Autism:

No Finer a Cause on the Planet" ________________________________________________________________

Tuesday, January 27, 2004 Vol. 8 No. 18

PUBLIC HEALTH

* More and More Autism Cases, Yet Causes Are Much Debated

* Autism Cases in the U.S. On The Rise

* Hearing to Examine Role Of Vaccines In Autism Cases

* IOM Meeting - NAA Needs Your Help!

RESEARCH

* Alteration In Amino-Glycerophospholipids Levels In The Plasma of

Children With Autism: A Potential Biochemical Diagnostic Marker

TREATMENT

* Antipsychotic Drugs Bring Weighty Alert

LETTERS

* Response to An Article Promoting ABA

* Autism Seems To Be Increasing Worldwide, If Not In London

PUBLIC HEALTH

More and More Autism Cases, Yet Causes Are Much Debated Epidemic Elephant in the public health living room not big enough yet for some to acknowledge

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No one disputes it. Cases of autism, the baffling and often devastating neurological disorder that strikes in early childhood, are rising sharply.

In California alone, the number of children receiving special services for autism tripled from 1987 to 1998 and doubled in the four years after that. National figures tell a similar story.

The upsurge has lent urgency to calls for more research on autism and more government spending to educate autistic children and has inspired federal officials, who late last year held an "autism summit" meeting in Washington, where they presented a 10-year plan of action.

But what lies behind the increase in cases is sharply debated. To some, the upswing has all the hallmarks of an epidemic and indicates that autism itself is increasing rapidly.

To others, the rise can in large part be explained by increased public awareness of autism in recent years, changes in the way the disorder is diagnosed and the incentive of tapping into federally mandated services for autistic children.

Neither side can prove its argument, because the types of studies that could tease out a true increase have not been done.

But the question is crucial, experts say, because its answer has significant implications for how federal money is spent, how afraid parents should be and how much effort scientists should devote to tracking down environmental factors in addition to genetic influences.

Advocacy groups, many of them founded by parents of autistic children, have tended to line up on the side of an epidemic. And some autism experts also believe the illness is increasing.

"To me, it's a huge public health emergency, a crisis," said Portia Iversen, a founder of Cure Autism Now, an organization based in Los Angeles that finances research. Ms. Iversen said she was certain that the number of children with autism was rising sharply.

But epidemiologists cluster on the other side of the debate.

They do not rule out the possibility of a true increase in autism. But they point to flaws in the way that the rising numbers — especially those in California — have been presented to the public. And they say the small size and widely varying findings of epidemiological studies of autism make it impossible to say what is going on.

For example, Dr. Eric Fombonne, an epidemiologist and a professor of child and adolescent psychiatry at McGill University, said most of the increase was probably a result of diagnostic changes and statistical anomalies.

What everyone agrees on is that autism is being diagnosed more frequently than in the past. The disorder, which is believed to be strongly influenced by genes, is marked by a profound impairment in the ability to relate to other people, a delay in language development, or repetitive behaviors.

Before the mid-1980's, most studies estimated the prevalence of autism at fewer than 5 cases for every 10,000 children. Over the last decade, epidemiological studies have come up with wildly disparate estimates, from 5.2 cases per 10,000 (in a large Norwegian study) to 72.6 per 10,000 (in a small Swedish study). But the trend has been upward, with most experts agreeing that at least 10 children out of every 10,000 are autistic.

Last year, in a review of all available studies of autism rates, Dr. Fombonne concluded that the findings "point toward an increase in prevalence over the last 15 years."

But predictions for the future differ along with views of what is responsible for the increase. If autism itself is increasing rapidly, the rates can be expected to keep rising, and with them, the projections of how much money will be required for services.

But if most of the increase reflects more accurate diagnosis, then rates should level off as the number of previously overlooked children diminishes.

The different interpretations also point researchers in different directions.

"If you accept the fact that the numbers have increased, you must seek an environmental cause," said Mark Blaxill, of Cambridge, Mass., a member of the board of SafeMinds, one of several advocacy groups that view some vaccines given to toddlers as a likely cause of the increase in autism.

Over the years, a host of other environmental factors have also been nominated as culprits, including a variety of infections, like German measles in pregnant mothers; the sedative drug thalidomide; the drug Pitocin, used to induce labor; synthetic compounds like plastics and PCB's; and food additives.

Yet so far, said Dr. Fred R. Volkmar, an autism expert and professor of psychiatry at the Yale Child Study Center, "hard scientific evidence to support any specific environmental cause has been lacking."

"Many of the purported environmental causes," Dr. Volkmar went on, "have been proposed on the basis of a single case, or a handful of cases, and the observations have not held up in larger samples."

A number of studies, including a large Danish trial, have found no link between autism and the so-called MMR vaccine for measles, mumps and rubella, though some advocates remain unconvinced.

The possible role of a mercury-based vaccine preservative, thimerosal, is still being investigated. But many investigators express skepticism for such a connection.

For the last few years, vaccines sold in the United States for the routine immunization of children either have not contained thimerosal or contain only a trace, according to the Centers for Disease Control and Prevention. The agency and the American Academy of Pediatrics have stated that no credible scientific evidence connects thimerosal with autism or other childhood neurological disorders.

If autism itself is not increasing markedly, the role of environmental influences diminishes. Epidemiologists say the wide variance in estimates from the prevalence studies that do exist support the idea that the disorder has not increased hugely.

In 2000 and 2001 alone, various published studies in the United States, Britain and Scandinavia put autism rates per 10,000 children at 30.8, 7.8, 12.2, 40.5, 26.1, 13.2 and 16.8. A study in Brick Township, N.J., published in 2001, found 36 cases among 8,896 children studied, a rate of 40.5 per 10,000.

Each study uses different methods and defines autism slightly differently. Complicating matters further, some studies include what are called autism spectrum disorders, a category that includes conditions like Asperger's syndrome.

Another reason for caution, the epidemiologists say, is that the numbers that have received the most publicity — the California findings, for instance, reported by the state's Department of Developmental Services — are not based on scientific studies. Instead, such reports are simply tallies of the number of children enrolled in state programs who carry an autism diagnosis. They do not take into account changes in methods of diagnosis or shifts in population over time.

Even so, the scientific support that would clinch the skeptics' arguments is lacking.

"We don't have a lot of evidence one way or another, sadly," said Dr. Craig Newschaffer, an associate professor of epidemiology and mental health at Johns Hopkins University.

Dr. Newschaffer said he believed "a large chunk" of the increase was a result of heightened public awareness and other such factors. "The devil is in how big a chunk is that big chunk," he said.

Dr. Robert S. Byrd, an associate professor of clinical pediatrics at the University of California at Davis, has tried to clarify the issue by examining the California data to see whether methods of diagnosis or other statistical anomalies could account for the increase.

Joined by colleagues at the university's MIND Institute, Dr. Byrd scrutinized 684 children enrolled in 21 regional centers for developmental disorders, including autism and mental retardation. About half were born from 1983 to 1985, the other half a decade later.

The study was based on questionnaires given to the children's parents. It concluded that the same proportion of children in each age group — about 88 percent — met the diagnostic criteria for autism, suggesting that changes in diagnosis did not explain the increase in cases.

The researchers also say they excluded two other possibilities: that parents were moving to California to obtain autism services and that some children with autism were in the past labeled as mentally retarded.

In a report to the California Legislature in 2002, Dr. Byrd and his colleagues concluded that "some, if not all, of the observed increase represents a true increase in cases of autism in California."

Yet their study, which has not been published in a peer-reviewed journal, itself became an immediate magnet for controversy.

Critics found serious flaws in it, including the small sample of responses. They also cited a variety of other factors, including public awareness, that were not examined in the study and so could not be ruled out.

The Centers for Disease Control, which in 2000 began a surveillance program to track autism cases in 18 states, may have a better chance of deciphering the issue. Dr. Marshalyn Yeargin-Allsop, the medical epidemiologist who is overseeing the effort, said the agency was studying the prevalence of autism, demographic factors like race and ethnicity, an array of possible causes of the disorder and whether autism increases over time.

In the meantime, if the numbers keep rising, the debate over what they mean will continue.

"When do you say some of it has to be real?" Dr. Newschaffer asked. "I don't think anybody knows the answer to that question."

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* * *

Autism Cases in the U.S. On The Rise

4_01_26_up_0000-2406-bc-us-autism~ew~xml,00.html < - - address ends here.

The United States is in the midst of a rise in autism, a neurological disorder that strikes young children and often devastates their parents.

In California alone, the number of children receiving special services for autism tripled from 1987 to 1998 and doubled in the four years after that, the New York Times reported Monday.

That's a pattern repeated across the country.

The upsurge has lent urgency to calls for more research on autism and more government spending to educate autistic children and has inspired federal officials, who late last year held an "autism summit" meeting in Washington, where they presented a 10-year plan of action.

Advocacy groups, many of them founded by parents of autistic children, have tended to line up on the side of an epidemic. And some autism experts also believe the illness is increasing.

But epidemiologists say it impossible to know exactly what is going on.

What everyone agrees on is that autism is being diagnosed more frequently than in the past.

The disorder, which is believed to be strongly influenced by genes, is marked by a profound impairment in the ability to relate to other people, a delay in language development, or repetitive behaviors.

Copyright 2004 by United Press International.

* * *

Hearing to Examine Role Of Vaccines In Autism Cases

Testimony next month will revisit the controversial issue of whether childhood vaccinations have anything to do with the calamity of autism.

Rep. Dave Weldon, R-Fla., a physician by trade, has pushed to have the hearing postponed, arguing that "it does not appear to be a serious effort to examine these critical issues."

Weldon and others worry the Institute of Medicine, part of the National Academy of Sciences, will reach premature conclusions and short-circuit important research that will be completed later this year.

"The national vaccine program has saved millions of lives and millions of kids from disability," he said. "When we have questions raised, it's very important to get them thoroughly evaluated and not just try to sweep them under the rug."

The one-day hearing on Feb. 9 in Washington, D.C., will tackle two

questions: • Could thimerosal, a mercury-containing preservative used in many vaccines in the 1990s before manufacturers voluntarily phased it out, have triggered autism in genetically susceptible children? • Could the measles-mumps-rubella (MMR) vaccine, which has never contained thimerosal, trigger autism? The controversy takes place as the number of autistic children nationwide rises dramatically, and many in the medical community worry that unfounded fears could cause parents to shun vaccinations for their children, leaving them vulnerable to deadly diseases.

England has suffered a drop in its vaccination rate because of the controversy.

Autism has no known cause and no cure.

Researchers around the country are exploring possibilities besides vaccines, from a genetic link to environmental factors such as pesticides, PCBs, flame retardants and chemicals used in industrial processes.

Weldon recently sent a letter to Julie Gerberding, director of the federal Centers for Disease Control and Prevention, urging her to postpone the meeting until at least the end of this year or early 2005, after additional research is completed.

The Institute of Medicine is conducting the hearing at the CDC's request.

As of Friday afternoon, Weldon had received no response.

Safe Minds, a New Jersey-based group that seeks to reduce mercury exposure in children, also sent a letter voicing similar concerns.

"Currently numerous investigations are under way that would offer much additional science to the debate," wrote Safe Minds President Lyn Redwood. "... Holding a hearing at this time, with little new data, is a waste of taxpayer dollars."

CDC spokesman Von Roebuck said the meeting will proceed as planned and should shed light on an important topic.

"This is an opportunity to gather a lot of information," he said.

The Institute of Medicine's Immunization Safety Review Committee typically holds a hearing on a question, analyzes the available studies and scientific literature, and then releases a report with its findings and recommendations a few months later, said spokeswoman Christine Stencel.

The Institute is a private organization created by the federal government to serve as an independent adviser on health-related issues.

Critics question the meeting's timing, speculating that the goal may be to have the Institute come out with a report rejecting the possibility of a vaccine-autism link as class-action lawsuits wind through the courts.

"I'm very suspicious of that," Weldon said. "... What better way to try to head this all off at the pass than to get the Institute of Medicine to issue a report (rejecting an autism-vaccine link?)"

Weldon added that if the Institute rushes to judgment, "they could end up with egg on their face three or four years from now. Ultimately, the research will come out."

The lawsuits center on thimerosal, a mercury-containing preservative used in several vaccines until the U.S. Food and Drug Administration asked manufacturers in 1999 to voluntarily phase it out of children's shots.

Thimerosal can still be found in children's vaccines outside of the United States.

The Institute of Medicine weighed in on the autism-vaccine controversy in 2001 by concluding there was no evidence of a connection between MMR and the disorder.

Questions about a link between MMR and autism first surfaced in 1998 when British gastroenterologist Andrew Wakefield noted that eight autistic children developed an unusual inflammation in their intestines and appeared to regress shortly after receiving the MMR vaccine.

The Institute of Medicine, in a second report released in 2001, called for additional studies on thimerosal.

The Institute concluded that it is "biologically plausible" that vaccines containing thimerosal could cause neurodevelopmental disorders in children." It said there is no evidence this has occurred, but there also was not enough evidence to rule it out.

Since those reports, several high-profile studies have cast doubt on an autism-vaccine link, including a look at 500,000 children born in Denmark between 1991 and 1998. That study found no difference in the level of autism among children vaccinated with MMR and those who were not.

Last year, a CDC study published in Pediatrics concluded that "parents should be reassured that quantities of mercury, aluminum and formaldehyde contained in vaccines are likely to be harmless on the basis of exposure studies in humans or experimental studies in animals."

But critics have taken aim at both studies and researchers around the country have other analyses under way.

The controversy heightened when Safe Minds, after obtaining documents through a Freedom of Information Act request, revealed that a CDC researcher initially found a statistically significant association between exposure to thimerosal-containing vaccines and developmental delays, then revised his methodology and found none in his final report issued in 2000.

Safe Minds also noted that a short time later the researcher, Thomas Verstraeten, went to work for vaccine maker GlaxoSmithKline in Belgium.

Weldon argues that much of the research is being driven by the CDC's National Immunization Program office, which has a vested interest in the outcome. "These people are essentially investigating themselves," he said.

Weldon stressed that he remains a vaccine supporter. He administered many vaccinations while practicing medicine and his 5-year-old son received all of the recommended shots.

But Weldon said it is important that an outside entity, with no connection to the CDC, oversee studies on vaccines and autism.

"My desire is to get at the truth and maintain public confidence in the vaccine program. In my honest opinion, we have gotten very little research done on these questions."

* * *

IOM Meeting - NAA Needs Your Help!

[From an announcement from the National Autism Association.]

As many of you know, the IOM will be holding an Immunization Safety Review meeting on February 9, 2004, on Vaccines and Autism at the Keck Center of the National Academies, 500 Fifth Street, NW, Washington, DC 20001, Room 100.

9.

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RESEARCH

Alteration In Amino-Glycerophospholipids Levels In The Plasma of Children With Autism: A Potential Biochemical Diagnostic Marker.

ds=14738907&dopt=Abstract

Chauhan V, Chauhan A, Cohen IL, Brown WT, Sheikh A.

NYS Institute for Basic Research in Developmental Disabilities, 1050 Forest Hill Road, Staten Island, 10314, New York, NY, USA

Currently, there is no biochemical test to assist in the behavioral diagnosis of autism. We observed that levels of phosphatidylethanolamine

(PE) were decreased while phosphatidylserine (PS) were increased in the erythrocyte membranes of children with autism as compared to their non-autistic developmentally normal siblings. A new method using Trinitrobenezene sulfonic acid (TNBS) for the quantification of PE and PS (amino-glycerophospholipids, i.e., AGP) in the plasma of children was developed and standardized. Wavelength scans of TNBS-PE and TNBS-PS complexes gave two peaks at 320 nm and 410 nm. When varying concentrations of PS and PE were used, a linear regression line was observed at 410 nm with TNBS. Using this assay, the levels of AGP were found to be significantly increased in the plasma of children with autism as compared to their non-autistic normal siblings. It is proposed that plasma AGP levels may function as a potential diagnostic marker for autism.

PMID: 14738907 [PubMed - in process]

* * *

TREATMENT

Antipsychotic Drugs Bring Weighty Alert

People taking certain drugs for schizophrenia, manic depression, autism, dementia, or several other psychiatric disorders should be carefully watched for signs they are developing diabetes, obesity or high cholesterol, four medical societies say.

The recommendation follows recent studies that link those potential side effects to certain antipsychotic drugs.

The statement deals with six drugs available in the United States. They are Abilify, Clozaril, Geodon, Risperdal, Seroquel and Zyprexa.

The recommendation, released today, comes from the American Diabetes Association, the American Psychiatric Association, the North American Association for the Study of Obesity, and the American Association of Clinical Endocrinologists. It appears in the February issue of the journal Diabetes Care.

The medications differ in their risks of promoting the various side effects, the statement says. So a patient who develops a problem with one drug can be gradually switched to another drug with less potential for that problem. For example, a switch should be considered if a patient has a weight gain of 5 percent or more, the statement says.

Obesity and diabetes, like high cholesterol, raise a person's risk of heart disease.

The recommendation says doctors should screen patients before starting them on such a drug or as soon as possible afterward, noting such factors as a history of obesity and diabetes in the patient and the family, and the patient's weight, blood pressure and cholesterol levels. Doctors should also monitor the patient once therapy has begun.

Patients and family members should be informed of the potential side effects and be told of signs of diabetes and especially those of a life-threatening complication called diabetic ketoacidosis, the statement says. That complication is marked by such symptoms as weight loss, nausea, vomiting, rapid breathing and dehydration.

That complication has appeared in some people using antipsychotics, and it was an early tip-off that the drugs might be linked to diabetes.

* * *

LETTERS

Response to An Article Promoting ABA:

I am concerned that the success of Ivar Lovaas based Applied Behavior Analysis programs was overstated in an article that appeared in a recent Schafer Autism report. Dr. Lovaas reported that 47% of the children in his pilot program were, by age 7, able to be indistinguishable from their peers in a classroom setting. I'm not doubting his results. However, having been a part of a group in Maryland of parents who were, "Doing Lovaas", the success rate is not nearly that high. I would roughly say the figure is 20-25% (This is a guess. No data on the programs was ever collected.). For parents investing large sums of money, they need to be aware that their child will probably not escape the problems of Autism.

Here's why I think there is a difference, mainly based on the fact that Dr. Lovaas conducted his pilot under ideal circumstances: 1) He had very well trained and competent staff. Most home programs done by parents have therapists who are trained by the parent. Often, up to half of those therapists are marginally competent or incompetent. 2) He had meetings every week. Most home programs have workshop leaders managing the programs. They fly in from out of state every 2-3 months. Supervision of the program is done by phone. Meetings conducted by parents are lucky to occur more that once a month. 3) Lovaas enforced the 40 hour a week minimum. Most home programs fluctuate from 20 hours a week to 40. It is very hard on parents to maintain that 40 hour a week level without outside institutional support.

4) I'm not sure of this one but I wonder if Dr. Lovaas eliminated children who may have had Autism combined with other problems. If so, his results could have been higher for that reason alone. Many parents will use the Lovaas programs regardless of whether there are other factors. I wonder if my son would have been rejected from Lovaas' pilot because he had infantile hydocephalis.

Because I think that the genetic link to Autism is overemphasized and because of the problems and low success rates of home based programs, the emphasis of research dollars should be spent on medical treatments of those who have already developed Autism. Currently, we have seen some success with gluten free diets, megavitamin therapy, Carnosine, steriods, hormones, detoxification, seizure medicines, anti-depressants, anti-psychotics, etc. Don't get me wrong, I think that every child with Autism should be entitled to a home ABA program. However, I think that once each programs' effectiveness has been measured that those that are not successful should be scaled back or dropped.

-David Kiasi, Maryland

* * *

Autism Seems To Be Increasing Worldwide, If Not In London

EDITOR [of the British Medical Journal] -It would be wonderful if autism had reached a plateau in northeast London, as reported by Mayor.1 Unfortunately, this has not happened anywhere else.

In Cambridgeshire one in 175 children in school had a diagnosis of autism in 2001 (F Scott, personal communication). According to a recently reported study by the Highland Council Education Department, as many as one primary schoolchild in 49 has been diagnosed with, or is awaiting diagnosis of, autistic spectrum disorder in the Inverness area.2 In the United States, where criteria from the Diagnostic and Statistical Manual, fourth revision have been exclusively used since 1994, 28 813 children aged 6-21 with autism attended school in 1995-6 compared with 118 603 in 2002-3, an annual increase of 18-26%, according to official reports to Congress.3 The California Department of Developmental Services reported that 3577 children with new cases of autism accessed services in 2002 (10 cases a day) compared with 633 in 1994. With an increase of 97% in the past four years, autism has become the top disability requiring initiation of services in the state. The last yearly increase of 31% is the largest in 33 years.4 In Canada's Province of Quebec the number of children with pervasive developmental disorders in schools increased by 63% in two years, from 1388 in September 2001 to 2267 in September 2003 according to the Ministry of Education of Quebec (C La Haie, fourth international medical conference on autism, Montreal, November 2003).

Lastly, in Saudi Arabia (population under 23 million) there were 42 500 confirmed cases of autism in 2002, and many more cases remain undiagnosed.5 Taylor's raw data have remained inaccessible since 1999, when he first denied any connection between autism and measles, mumps, and rubella vaccination, in a study that neither had a population based cohort design nor sufficient statistical power to detect an association.w1 w2 w3

- F Edward Yazbak, paediatrician TL Autism Research, 70 Viewcrest Drive, Falmouth, MA 02540, USA TLAutStudy@aol.com

References w1-3 are published on bmj.com

Competing interests: Grandfather of a boy with regressive autism, typical "autistic" enterocolitis, and evidence of measles genomic RNA in the gut wall.

References

1. Mayor S. Apparent increase in autism in children has stopped, study

shows. BMJ 2003;327: 248. (2 August.)[Free Full Text] 2. Shock as incidence

3. Twenty-sixth Annual Report to Congress on the Implementation of the

Individuals with Disabilities Education Act. To Assure the Free Appropriate Public Education of All Children with Disabilities (Section 618). Washington, DC: US Department of Education, 2003.

4. California Department of Developmental Services. Autism spectrum

disorders. Changes in the California caseload. An update: 1999 through 2002. Sacramento, CA: Department of Developmental Services, 2003.

5. Ramadan G, Alkhereiji M. Animal-assisted therapy works wonders.

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