SCHAFER AUTISM REPORT "Healing Autism:

No Finer a Cause on the Planet"

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Tuesday, January 07, 2003

PUBLIC HEALTH

* Study Confirms Marked Rise in Autism

* Prevalence of Autism in a US Metropolitan Area

* UK Doctors Call for MMR Campaign

TREATMENT

* Study Supports Protective Effect Of Stimulant Treatment for ADHD

* FDA Approves Prozac for Children

* Brain Cells Can Be Grown In Dish: Scientist

EDUCATION

* Funding Shortfall Threatens Special Ed

COMMENTARY

* Getting Back on Track

CARE

* No Takeover of Bancroft

PUBLIC HEALTH

Study Confirms Marked Rise in Autism

30107/hl_hsn/study_confirms_marked_rise_in_autism

HealthScoutNews - A new federal study confirms there has been a marked increase in autism and related conditions in American children.

And epidemiologists are pressing ahead with studies designed to identify the cause.

The new research, by epidemiologists at the U.S. Centers for Disease Control and Prevention, found an incidence of 3.4 cases per 1,000 among children aged 3 to 10 in the Atlanta area.

"This overall rate is 10 times higher than rates from three other U.S. studies that used similar, specific criteria to identify children with autism and pervasive developmental disorders in the 1980s and early 1990s," the report says.

Pervasive developmental disorders are milder versions of autism, in which children have difficulty communicating and interacting socially. Dr. Marshalyn Yeargin-Allsopp, the CDC epidemiologist who is lead author of the new report, says the study, and others under way, are being done "because clinical colleagues began calling us to say they were seeing a lot of children with autism and developmental disorders."

The incidence found in the Atlanta study is similar to one reported in a recent New Jersey study and to those of several European studies, the report says. And California investigators released a report in October showing a sharp increase in rates of autism and related disorders in that state.

Autism has become a high-profile condition in recent years. Pressured by parents and advocacy groups, Congress provided funds to conduct studies about the condition in 2001 and 2002.

A number of studies designed to find a cause are going on, Yeargin-Allsopp says. They are "case-control" studies, in which a number of factors that might contribute to the condition are compared in children with and without autism. The results of one of those studies, also being done in Atlanta, could be published as early as this year, Yeargin-Allsopp adds.

Yeargin-Allsopp's new research, which appears in this week's issue of the Journal of the American Medical Association (see abstract below)), lists several factors that might contribute to the increased incidence of autism and related disorders. They include greater public awareness of autism, changes in diagnostic criteria that have expanded the number of children listed as having a problem, and increased media coverage of affected children.

Yeargin-Allsopp's study does not mention one controversial hypothesis that has gained widespread publicity -- that the increase in cases is caused by the vaccine used for measles, mumps and rubella.

"This study was not designed to look at the causes of autism," Yeargin-Allsopp says. "There will be eight areas of the country where we look at prevalence and five areas where we examine the causes of autism."

A study released in October by researchers at the University of California, Davis reported that cases of autism in that state had tripled between 1987 and 1998. The authors of that study said the increase could not be explained by genetics, birth injuries, or changes in diagnostic criteria. It also found no evidence linking the vaccine to the condition.

The Atlanta study found that 40 percent of the children with autism and related problems were not diagnosed until they began school. Early diagnosis is important, particularly for pervasive developmental disorder, Yeargin-Allsopp says, because intensive therapy can enable those children to lead normal or near-normal lives.

Vanessa Collier, a spokeswoman for the Autism Society of America, says, "There is an alarming geographic growth in the incidence of autism in the United States and around the world. At these rates of growth, the cost of autism to the U. S. economy will be more than $300 billion through the next decade, constituting a national health crisis."

The cause of autism is still unknown "despite more than 50 years of study," Collier adds. There is "a split in the middle" among parents on the vaccine hypothesis, she says, noting, "Studies have not supported a link, and more research is needed."

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Prevalence of Autism in a US Metropolitan Area.

ds=12503976&dopt=Abstract

JAMA 2003 Jan 1;289(1):49-55

Yeargin-Allsopp M, Rice C, Karapurkar T, Doernberg N, Boyle C, Murphy C. Centers for Disease Control and Prevention (F-15), 4770 Buford Hwy NE, Atlanta, GA 30341. mxy1@cdc.gov

CONTEXT: Concern has been raised about possible increases in the prevalence of autism. However, few population-based studies have been conducted in the United States.

OBJECTIVES: To determine the prevalence of autism among children in a major US metropolitan area and to describe characteristics of the study population.

DESIGN, SETTING, AND POPULATION: Study of the prevalence of autism among children aged 3 to 10 years in the 5 counties of metropolitan Atlanta, Ga, in 1996. Cases were identified through screening and abstracting records at multiple medical and educational sources, with case status determined by expert review.

MAIN OUTCOME MEASURES: Autism prevalence by demographic factors, levels of cognitive functioning, previous autism diagnoses, special education eligibility categories, and sources of identification.

RESULTS: A total of 987 children displayed behaviors consistent with Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition criteria for autistic disorder, pervasive developmental disorder-not otherwise specified, or Asperger disorder. The prevalence for autism was 3.4 per 1000 (95% confidence interval [CI], 3.2-3.6) (male-female ratio, 4:1). Overall, the prevalence was comparable for black and white children (black, 3.4 per 1000 [95% CI, 3.0-3.7] and white, 3.4 per 1000 [95% CI, 3.2-3.7]).

Sixty-eight percent of children with IQ or developmental test results (N = 880) had cognitive impairment. As severity of cognitive impairment increased from mild to profound, the male-female ratio decreased from 4.4 to 1.3. Forty percent of children with autism were identified only at educational sources. Schools were the most important source for information on black children, children of younger mothers, and children of mothers with less than 12 years of education.

CONCLUSION: The rate of autism found in this study was higher than the rates from studies conducted in the United States during the 1980s and early 1990s, but it was consistent with those of more recent studies.

PMID: 12503976 [PubMed - in process]

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UK Doctors Call for MMR Campaign

A quarter of all parents in Swansea [Wales] are refusing to allow their children to be immunised against measles, mumps and rubella with the triple MMR vaccine. The parents fear the vaccine could cause autism or other disorders following controversial research disputed by the government.

Family doctors in the Swansea area are calling for a local campaign to encourage take-up of the MMR jab.

In some parts of the city, so many parents are refusing the jab that immunisation rates are down to just 72%, while twice as many teenagers are contracting mumps.

Yvonne Davies was so worried about the triple vaccine that she paid £200 so that her grand-daughter Nia could have three, single injections administered privately.

But she worries that the decision over what kind of vaccine to use is being made more difficult by a government determined the triple dose is safe.

"Before long, people will say:' I'm not having the MMR - but unfortunately I can't have an alternative, even privately, and there will be epidemics'."

Rubella fears

Doctors suspect measles cases are on the rise too, as some children fail to return for a booster vaccination.

They are also concerned at the prospect of a return of rubella, said Dr Roland Salman, Director of the Communicable Diseases Centre.

"In the future, when these girls become women of child-bearing age, they will be susceptible to getting German measles when they are pregnant.

"The worry would be that we will see an upswing of handicapped children," he said.

The controversy over MMR began in 1998, following research by Dr Andrew Wakefield, then a reader in experimental gastroenterology at London's Royal Free Hospital.

"This is a genuinely new syndrome and urgent further research is

needed":

Dr Andrew Wakefield: 1998

In February, he suggested that the MMR vaccine might be linked to an increased risk of autism and bowel disorders.

Dr Wakefield said he had evidence that children's behaviour changed drastically, shortly after they received the MMR jab.

He said: "This is a genuinely new syndrome and urgent further research is needed to determine whether MMR may give rise to this complication in a small number of people."

Dr Wakefield put forward a theory that the combination of the three virus strains contained in MMR may overload the body's immune system and cause the bowel disorder to develop.

Controversy continues

But the UK Government has always rebutted his theories and, in March 1998, a panel of experts set up by the Medical Research Council said there was "no evidence to indicate any link" between the MMR jab and bowel disease or autism in children.

Since then, the government has continued to cite ongoing studies to support its views that MMR is safe.

Dr Wakefield has continued to maintain his concerns about its safety.

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TREATMENT

Study Supports Protective Effect Of Stimulant Treatment for ADHD Meta-analysis shows medication treatment decreases risk of future substance abuse

An analysis of all available studies that examine the possible impact of stimulant treatment for attention-deficit hyperactivity disorder (ADHD) on future substance abuse supports the safety of stimulant treatment. Using a statistical technique called meta-analysis, the researchers from Massachusetts General Hospital (MGH) found that medication treatment for children with ADHD resulted in an almost two-fold reduction in the risk of future substance abuse. The report appears in the January 2003 issue of Pediatrics. "We know that untreated individuals with ADHD are at a significantly increased risk for substance abuse. And we understand why parents often ask whether stimulant medications might lead to future substance abuse among their children," says Timothy Wilens, MD, MGH director of Substance Abuse Services in Pediatric Psychopharmacology, the paper's lead author. "Now we can reassure parents and other practitioners that treating ADHD actually protects children against alcohol and drug abuse as well as other future problems."

Wilens and his MGH colleagues have conducted previous studies that found a protective effect in stimulant treatment. However, at least one report from another research center asserted that stimulant treatment increased the risk of later substance abuse. In order to resolve the question, Wilens' group searched the medical literature for studies of children, adolescents and adults with ADHD that included followup information on later substance abuse. They identified six such studies conducted in the U.S. and Germany, which provided information on more than a thousand participants with ADHD -- 674 who received stimulant treatment and 360 who were non-medicated -- followed for four years or more. These studies included both the previous MGH research and the study suggesting increased risk.

After application of standard meta-analysis techniques, the researchers found a significant overall reduction in the risk of subsequent substance abuse among those receiving stimulant treatment. They note that four of the six studies showed "striking protective effects of stimulant medications."

Of the other two studies, one did not find significant differences in substance abuse between the treated and untreated groups. Regarding the study that suggested an increased risk, the MGH researchers noted that participants who received stimulant treatment in that study had more problems before they began treatment, particularly a greater incidence of conduct disorder (juvenile delinquency). Since conduct disorder is a recognized and very strong risk factor for substance abuse, it is unclear whether the conduct disorder or the medication actually resulted in the increased substance abuse risk.

The MGH team also noted that the protective effect of stimulant treatment for ADHD in childhood was not as strong in young adults as it was in adolescents. While some of this could relate to the fact that adolescents are still subject to parental supervision, the researchers also suggest that past recommendations that stimulant treatment be discontinued in adolescence could cause the protective effect to disappear in subsequent years.

"From a public health level," Wilens says, "these results finding protection against later substance abuse -- which is one of the most malevolent problems facing adolescents and young adults -- are among the strongest in child psychiatry. Moreover, these findings add to the growing literature supporting the long-term safety of stimulants and other medications for treatment of ADHD."

Wilens and colleagues are continuing to study the biological and psychological mechanisms by which ADHD increases the risk for substance abuse in young people and why treatment decreases the ultimate risk.

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Autism Resource

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FDA Approves Prozac for Children

Psychiatrists Welcome the Decision

Prozac is now formally available for depressed children.

Psychiatrists have prescribed the world's best-known antidepressant, and similar competitors, to their youngest patients for years, despite a shortage of studies proving they work in children.

But the Food and Drug Administration declared Friday that there's finally proof that Prozac alleviates depression in children 8 years and older, the first drug among the newer antidepressants, which boost the mood regulator serotonin, to win such approval.

Maker Eli Lilly & Co. said it didn't intend to market Prozac for children. Still, putting child-specific information on Prozac's FDA-mandated label means more doctors, not just depression specialists, may prescribe it.

The FDA also approved Prozac's use in children with obsessive-compulsive disorder, the third serotonin-enhancing drug to win that designation.

Prozac side effects are similar for adults and children, including nausea, tiredness, nervousness, dizziness and difficulty concentrating, the FDA said.

But children have one unique side effect: In one study, children and teenagers taking Prozac grew a little more slowly a half inch less in height and 2 pounds less in weight over a period of 19 weeks than similarly aged children taking a dummy pill.

No one yet knows if the Prozac patients catch up or how big a concern that is, said the FDA's Dr. Russell Katz. Lilly agreed to further study the side effect.

Up to 25 percent of U.S. children and 8 percent of teenagers suffer depression, the FDA said. Additionally, about 2 percent of the population has obsessive-compulsive disorder, and at least a third of those cases began in childhood.

Psychiatrists welcomed the FDA's move.

"It made sense to prescribe these drugs, but yet everyone who did it felt a certain amount of anxiety that we didn't have all the data," said Dr. Lois Flaherty of the American Psychiatric Association.

Manufacturers have little incentive to study adult drugs in children if they expect desperate pediatricians will use the medicines anyway. In 1998, the FDA tried to require more pediatric testing, but a federal court recently threw out that requirement.

Copyright 2003 The Associated Press.

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Brain Cells Can Be Grown In Dish: Scientist

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Bangalore: An India-born US scientist said that the day might not be far off when brain cells grown in a petri dish can be networked by stimulating with electrodes to mimic human brain. He also said it is possible to 'rewire' the neuron networks in the brain so that the region responsible for hearing may take over the function of sight or vice versa and

Mriganka Sur, Professor of Neurology at the Massachusetts Institute of Technology, said one way to replace dead brain cells is to 'regrow' them using stem cells. The alternate way of replacement is by networking neurons that carry same information. The assembled network will perform the function that was lost.

Addressing a plenary session at the Indian Science Congress, Sur said it might become possible to revive brain cells destroyed in stroke victims and also treat brain disorders like autism and parkinson syndrome.

While some genes in brain are involved in regulation of early stages of brain developoment, impact of environment is enormous in expression of most genes in later states. Sur said brain networks are mostly regulated by environmental inputs.

He said brain has pathways through which sensory information travels and neuronal networks where information is processed. Processing depends on cortical neurons regulated by inputs from environment. By rewiring networks regions responsible for brain functions can be switched.

Understaning which genes are located where, has been made possible by sequencing of the human genome and the micro array technology that can analyse thousands of genes at once, Sur said.

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EDUCATION

Funding Shortfall Threatens Special Ed

Advocates try to safeguard program

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Groups worried about a shortfall in Massachusetts state money for special education students who attend private residential schools are gearing up to try to stave off cuts.

"It's going to be a fiscal disaster for each school district because they don't have wiggle room to cover that," said Suzanne Peyton, executive director of the Massachusetts Association of Special Education Parent Advisory Councils, which plans concerted efforts to inform parents about the cuts. "Every school committee that has a budget has buttoned it down to every nickel and dime."

A strategy session is planned for this morning for officials from organizations representing school committees, administrators, and private residential schools that serve public school special-education students, said Christopher Martes, executive director of the Massachusetts Association of School Superintendents. They plan to discuss ways to lobby the Legislature and other options for addressing the loss of funds.

Last week, state Education Commissioner David P. Driscoll sent a memo to superintendents announcing a shortfall in the state's contribution to the cost of public school students attending private residential schools. The state has budgeted about $70 million for the programs this fiscal year, but expects that the costs could run about $15 million over.

Driscoll said he believes the state will be able to cover most of the gap through federal grants. But he warned that districts, already grappling with bleak budget predictions and possible layoffs, will probably have to pay for a bigger portion of those special-education costs in the 2003-2004 school year. Currently, the state and local districts each pay roughly half the cost.

The private residential schools serve about 1,400 public school students around the state, Peyton said. The most expensive form of special education, it can cost as much as $175,000 a year, according to the Department of Education. The money pays for highly specialized instruction, medical care, and small class sizes.

While the cost might sound high, advocates say children in those settings tend to have the most severe problems. Many have multiple disabilities, such as cognitive problems and conditions such as blindness, Peyton said. Others have severe autism, behavioral disorders, or other serious medical problems that require specialized care and teaching.

"This is not abuse of the system," Martes said. "These are very, very challenged kids who need services."

Jean Bowden of Barnstable, whose autistic daughter, Abbie, attends the Boston Higashi School in Randolph, worries that the shortfall could lead districts to try to move students out of residential placements and into less-expensive programs. She said her 15-year-old daughter has improved academically and socially since she started at Higashi four years ago.

"These schools are so important because they offer what the public school cannot do," Bowden said.

In his memo, Driscoll said the DOE typically runs out of money for the residential services but the Legislature normally makes up the difference in a supplemental budget. But with huge deficits projected for this fiscal year and next, Driscoll said he does not expect any relief this spring.

Driscoll told superintendents that the state would continue to pay claims submitted by private schools for services through March 31, but after that bills covering services through June 30 should be sent to districts. He said he hopes to use money from federal grants to reimburse districts for most of those costs in August.

Organizations that work with local school committees and superintendents are worried that the reimbursements won't come. Martes said his organization will try to work with the private schools on a possible plan to defer payments.

The news about the state's shortfall comes at a time when school superintendents are already drafting budget blueprints projecting cuts of 10 to 20 percent in general services. Some organization leaders say they worry that school committees will get a cool reception if they try to close the gap with local funds for special education.

"If in fact those payments need to be made at the local level in the spring, then you're again pitting regular education against special education," said Martes, "which is even more divisive in small communities because people know who these kids are."

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COMMENTARY

Getting Back on Track

By Terry Boisot

TheArcLink, Inc.

[Thanks to Debbie Hosseini.]

The other day, for just a minute, I got a little melancholy. My unconditional expectations for mainstream society to embrace all of humanity, took a nosedive. The spirit that moves me, crash-landed on a remote desert island.

This is so out of character and it worried me.

I got a little caught up in the grim details of the financial crisis of California and elsewhere. People with disabilities and families are expected to carry a tremendous burden because of this crisis. I began to mull around in my mind that I should accept that some things wouldn’t change soon, while a sense of humanity would evolve over time in the world, with or without me.

Whoa! I can’t even believe I said that!

Part of my attitude started to develop on New Years Eve, when I met some friends at Chili’s Restaurant for a beer. I don’t know why Steve and Ingrid wanted to go there. I guess they do all the time. The space was cramped; the tables close together, and Steve’s power wheelchair and Ingrid’ s scooter fit nowhere easily. It took maybe twenty minutes to get our seating situated, while servers and the hostess were getting increasingly agitated at our interference with the free flow of aisle space.

I remember looking directly at the hostess and interpreting her body language to say, “I’m doing these folks a favor by serving them at all.” I’ m good at that – body language that is. An expletive came to mind that would have described the scene very nicely. The word did not pass my lips however.

Maybe it should have.

The weekend before, eleven-year-old Simone and her dad, Dan went on a ski trip. Dan bought the ski equipment, signed Simone up for lessons – paid for them in fact, and when the time arrived was told, “We don’t give lessons to kids like that here.”

I wonder how I might have reacted if something similar ever happened to Ben in any setting.

Our dignity would take time to recover – as would the dignity of those on the receiving end of my wrath.

So, in an attempt to rationalize these experiences, to accept the fiscal crisis that assures that people who can afford it the least will suffer the most, I said to my friend Kim, “The future will be different. The kids that know inclusion - that accept children like Ben - will make the difference. I guess we will have to wait.”

Kim said in her usual soft, but firm tone something like, “So, what does that mean to people today, and at whose expense have you become so complacent?”

Well, everyone’s I suppose.

Maybe she didn’t say that exactly, but that is what she meant.

So I am back on track. Ready to help mobilize the world of people, families and advocates against the injustices of prevailing attitudes that say, “People with disabilities still belong in the back of the bus, if they can get on the bus at all that is.”

We’ve got names to take and butts to kick – the metaphorical butts that is.

Right Kim?

Terry Boisot is Ben's mom. She is Director of the CA Leadership Project, the Chair of the Board of Directors of TheArcLink Incorporated, serves on the board of directors of Alpha Resource Center of Santa Barbara and The Arc of the United States and is concerned about all disability matters. Terry welcomes comments. Please address them to her at tboisot@thearclink.org.

The views expressed in this column are those of the author.

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CARE

No Takeover of Bancroft

State officials have decided not to take over Bancroft NeuroHealth, a center for disabled children. The decision by the state commissioners of health and human services came Friday, one day after prosecutors decided Bancroft was not criminally responsible for the February death of a resident, Matthew Goodman, 14, who was autistic. The Camden County prosecutor, Vincent P. Sarubbi, above, said his office found no evidence of intentional harm to Matthew, who died from aspiration pneumonia and other ailments. That differed from state investigators' finding in August that there was evidence of physical abuse.

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