SCHAFER AUTISM REPORT "Healing Autism:

No Finer a Cause on the Planet" ________________________________________________________________

Thursday, January 22, 2004 Vol. 8 No. 17

NOTE: Feb. Calendar of Events Update Deadline

in 3 Days! January 25

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Scientific, Lay Press Starting to Label Autism "Epidemic"

RESEARCH

* Journal Paper: Autism in the United States: a Perspective

PUBLIC HEALTH

* Wire Service: Autism Reaching 'Epidemic' Levels

* MMR-Search For A New Vaccine

AWARENESS

* How Families Cope With Autistic Children

RESEARCH

Autism in the United States: a Perspective - New Paper

F. Edward Yazbak, M.D., F.A.A.P.

Journal of American Physicians and Surgeons Volume 8 Number 4 WInter 2003

ABSTRACT

Once rare, autism has reached epidemic proportions in the United States. The increase cannot be attributed to changes in diagnostic criteria, which have actually become more restrictive. Already a heavy burden on educational facilities, the increasing number of patients afflicted with this serious disability will have an enormous effect on the economy as the affected children reach adulthood. Studies of all possible causes of the epidemic are urgently needed. To date, studies of a potential relationship to childhood vaccines have been limited and flawed.

Historical Background

The important historical observation about autism is that it was unknown in ancient cultures, or even in medieval times, and that it just "appeared" some 60 years ago.

Leo Kanner, while at Johns Hopkins, was first to describe autism in 1943. His article Autistic Disturbances of Affective Contact described 11 children who had an apparently rare syndrome of "extreme autistic aloneness."’ Because these children’s symptoms started early, Kanner’s Syndrome was also known as "infantile autism." In 1944, Hans Asperger also described a group of children with similar symptoms who were "highly recognizable."2 In the same year, Bruno Bettelheim theorized that children developed autism because their "refrigerator mothers" raised them in a non-stimulating environment, with resulting damage to their social, language and general development. Bettelheim’s credentials were questionable,3 and his theory has been discredited.

Bernard Rimland, Ph.D., founder of the Autism Society of America and founding president of the Autism Research Institute (ARI), has thoroughly analyzed the ARI database of more than 30,000 entries and reported two clear

trends: First, the incidence of autism has increased remarkably, becoming "an explosion~~ in recent years4 and second, a distinct shift in the time of onset of autistic symptoms has become evident. "Late onset autism (starting in the second year) was almost unheard of in the 1950s, ‘60s, and ‘70s; today such cases outnumber early onset cases five to one."5 Parents in increasing numbers are reporting similar stories. A child, most often a boy who is developmentally, socially, and verbally on par for his age, suddenly stops acquiring new words and skills in the second year of life and then regresses, losing speech, cognitive abilities, and social dexterity.

Children in this group are said to have regressive autism. Further, overwhelmed parents may drift apart, and siblings’ stress may be manifested as behavior problems.’ Suggesting that a sudden and exponential increase in autistic disorders is not real, and results only from better diagnosis, amounts to denial.

Similarly, though some affected children have Fragile-X Syndrome or a family history of autism, it does not seem reasonable to insist that the present autism outbreak is solely caused by hereditary factors. Genetic disorders have never presented as epidemics, and investing the scant available resources solely in genetic research diverts them from the scientific exploration of more plausible envli~nmental etiological factors.

Official U.S. Statistics

The Individuals with Disabilities Education Act (IDEA) of 1975 was intended to ensure equal educational opportunities for children with disabilities. State and local education districts must provide a "free appropriate public education" based upon an "individualized education program" geared to each student’s needs. The U.S. Department of Education is mandated to report yearly to Congress in accordance with IDEA.

Earlier in the program, cases of autism in U.S. schools were few. As they steadily increased, a decision was made to list autism as a separate entity starting in 1991. As shown in Figure 1, the number of children aged 6 to 21 with autism in U.S. schools rose steadily from 5,415 in 1991-1992 to 118,602 in the latest published Department of Education report for the 2001-2002 school year.7

Table 1. States with the Largest Increases in the Number of Students with Autism,Ages6to 21 [1 992-93 to 2002-03]

1992-1993 2002-2003

Illinois 5 5,080

Ma land 28 2,962

Mississi 0 537

Nebraska 4 481

Nevada 5 684

New Hampshire 0 491

Ohio 22 4017

Oreon 37 339

Wisconsin 18 2.739

DC 0 179

Source: U.S. Department of Education Annual Reports to Congress (IDEA)

Every state in the U.S. has recorded an increase in the number of students with the diagnosis of autism. Nine states and the District of Columbia, which recorded the highest increases, are shown in Table 1.

It is likely that the number of children with autism will continue to increase as more affected children enter first grade (see Figure 2). According to the New Jersey Department of Education, there were 14 students of age 21 with autism in the state in the last reported school year, 2001-2002, compared to 514 students who were age 6. Other states are reporting the same trend: an increase in the number of younger children needing services, more programs being organized to handle the influx, and an ever increasing number of specially trained therapists hired.

In the last 10 years, the number of children with autism between 6 and 21 years of age attending school in the U.S. rose at a much faster rate than the number of children with disabilities in general (seeTable 2).

When IDEA passed in 1975, Congress promised to provide 40 percent of the costs associated with the legislation. However, it has never actually funded more than 15 percent.8 State governments have also provided a decreasing proportion of the school budgets as state funds become scarce nationwide. Federal and state contributions vary greatly from state to state (see Table 3).

In addition, state contributions are not evenly distributed, and cities usually receive proportionately more state dollars than suburban communities, though the latter may have a higher concentration of affected children.’ Local taxpayers usually end up bearing the spiraling cost of educating the increasing number of affected children.

Special services are often provided through most of the summer, and each child with autism can cost the school system $30,000 a year or more. If an acceptable program is not locally available, the affected child has to be transported to a collaborative or regional center, where the yearly tuition may be higher. In rural areas, the cost of providing therapy and educating a single child with autism may be considerable."’ Lastly, as autism is diagnosed earlier, services must be made available starting at age 3, and affected children must be enrolled in early intervention programs, which are also expensive to start and maintain.

For a child to receive services in any program, a firm diagnosis of autism must first be made by a physician. Each case is then thoroughly reviewed by the special education department in the school district, which may request more information or turn down the recommendation. Autism is not a diagnosis that parents accept readily, physicians make lightly, or that school authorities approve easily. In fact, it is probable that autism in U.S. schools is actually under-diagnosed and that many less severe cases are labeled behavior and communication disorders, in order to avoid the stigma and/or the added cost.

In spite of all of the above, some "experts" still claim that the spectacular increases in autism reported lately are simply the result of more liberal or less stringent diagnostic criteria.

Diagnostic Criteria for Autism in the U.S.

As technical recognition of autism increased along with the number of cases, accurate comparisons in prevalence and incidence rates became difficult, if not impossible.

In Kanner’s conception, children with autism were affected early and had poor or absent speech; an obsessive desire for preservation of sameness; lack of affective contact; difficulty with interpersonal communication; and a fascination with specific objects.11

In 1956, Kanner and Eisenberg’2 proposed that just two essential features were required to make a diagnosis of autism: profound lack of affective contact and repetitive, ritualistic, elaborate behavior.

In 1978, Rutter’3 proposed that a definition of autism in children required four criteria: (1) Impaired social development out of keeping with the child’s intellectual level; (2) impaired language development out of keeping with the child’s intellectual level; (3) stereotyped play patterns, abnormal preoccupations, and resistance to change; and (4) onset before the age of 30 months.

In 1980, DSM III (Diagnostic and Statistical Manual ofMental Disorders, Third Edition),11 was introduced, and its classification of infantile autism requiredfive criteria: (1) Lack of responsiveness to others; (2) language absence or abnormalities; (3) resistance to change or attachment to objects; (4) absence of schizophrenic features; and (4) onset before 30 months.

In 1987, the diagnostic criteria for autism were revised (DSM III-R), and a definition of pervasive developmental disorders was introduced." Other countries had their own sets of criteria.

Since 1994, the required criteria for Autistic Disorder 299.00 have been those established in the DSM iv; shown in Table 4,15

Similarly, detailed and strict criteria were outlined for Asperger’s Syndrome (AS) and Pervasive Developmental Disorder, Not Otherwise Specified

(PDD-NOS) 299.80.

Clearly, DSM IV criteria are more restrictive. In fact, in certain states such as Washington, the number of cases of autism (IDEA) actually decreased immediately after the introduction of DSM IV (Figure 3). The subsequent steady rise in the number of affected students clearly points to a true increase, as the criteria have remained uniform, and in all probability the diagnosis in each case has been accepted by the same medical, educational, and developmental teams.

The Impact of Autism

The autism explosion since 1994 and DSM IV is best documented in California, where the Department of Developmental Services (DDS)" regularly reports all new cases of the disorder introduced in the system (Figure 4). As shown, there were 633 new cases of DSM IV autism in 1994. Within 5 years (1999), the number of new cases had risen to 1,944 or 6 new cases a day, 7 days a week. There were 2,725 confirmed new cases of autism added to the system in 2001 and 3,577 more in 2002 or ten children a day.’7 That one-year increase of 31 percent was the highest in the 33-year history of the department. Children with autism under age 3 and those with PDD-NOS and Asperger’s Syndrome were not included.

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Table 5. Autism, Behavior Disorders, and All Disabilities in Rhode Island

(6/30/2001-6/30/2002)

6/30/2001 6/30/2002 % Increase

Autism 407 498 23.35

Behavior Disorders 2,583 2,848 10.25

A11 Disabilities #9; 31,793 32,78 3.13

Source: Rhode Island Department of Education __________________________________________________________________________

Autism has become the predominant disability for which services are accessed in California. According to the most recent California Autism Report released in March 2003, cases of Type I autism increased by 97 percent in the last four years compared to 16 percent for cerebral palsy and 29 percent for mental retardation.

The same is true in other states and is well documented recently in Rhode Island, where proportionately, the one-year increase in autism was substantially greater than the increase in behavior disorders and all disabilities combined (see Table 5).

The only reasonable conclusion from this review is that the recent increase in autism in the U.S. is real and significant. There is also every reason to believe that more children will be "developing" autism in the coming years. Educational programs will have great difficulty coping with the flow of newly diagnosed children. In addition, when autistic children become adults and their parents are not there, the impact on society will be even greater and the burden on the national economy will mount into the trillions of dollars.

Possible Etiologies Control of epidemics is the responsibility of public health authorities. The Centers for Disease Control and Prevention (CDC), the central agency in charge of the nation’s health, has previously played a vital role in a variety of national and international crises and programs ranging from chemical explosions in Texas City, Texas, in 1947, to family planning (1967), famine relief in Nigeria (1968), birth defects monitoring (1970), occupational safety (1973), ship sanitation (1975), and the health complications from the Mount St. Helens volcanic eruption in l980.’~ Since the 1980s, the agency has become increasingly involved in promotion and regulation of vaccines. However, the CDC has done little to control the autism epidemic or discover its causes. So far it has funded only three studies, and all three were epidemiologic. In the first two, both conducted in the U.S., serious increases in autism were reported.

In one, the investigators concluded that there were "high rates of autistic disorder and ASD in Brick Township, New Jersey, relative to rates from previously published studies. The rates from the majority of recent studies are several fold lower than the rate in Brick Township.""

In the second, examining autistic syndromes in the area near Atlanta, Ga., the authors commented, "The overall rate (of autism) is 10 times higher than rates from three other U.S. studies ... in the l980s and early 1990s.~~2 The primary purpose of the third study, from Denmark,2’ appears to be exoneration of the measles-mumps-rubella (MMR) Several methodological problems marred the research and, despite the fact that there was a higher prevalence of autism among the children who had received the MMR vaccine, the authors asserted that there was no MMR-autism connection. Moreover, the study is not relevant to the situation in the U.S. Vaccines in Denmark have not contained thimerosal since 1992, and Danish children only received six doses of vaccine in the first year of life. In the U.S., children received 12 or more doses of vaccine before their first birthday, and many of those vaccines contained thiomerosal, including one administered in the nursery.

So far, though the CDC does not know what causes autism and its neurological, endocrine, gastrointestinal, and immune symptoms, it appears determined, without a single clinical study of its own, to deny the potential role of MMIR vaccination and mercury preservatives. The possibility that mercury may affect the immune system~~ of certain genetically predisposed children and trigger autism upon their exposure to MMR29’2 has never been conclusively ruled out.

The decision to remove thimerosal from pediatric vaccines in 1999 was wise. It is difficult to believe that, to assure sterility, a known poison had been added for more than 60 years to products intended for infants. Safer "preservatives" should have been used.

Serious independent research is urgently needed. It cannot be expected from people with financial ties to the vaccine industry and the vaccine authorities.

Research should not be restricted to looking at epidemiologic data on computer spreadsheets. It must include parents’ interviews and a careful examination and evaluation of the affected children. Endoscopies and colonoscopies should be carefully performed, and biopsies of the gut wall should be tested for evidence of measles.

It was revealed at the December 10, 2002, bearing of the House Government Reform Committee that Arthur Krigsman, M.D., had performed some 250 colonoscopies on children with autism and had identified pathological and histological findings similar to those described by Andrew Wakefield in England. Unfortunately, his hospital did not allow him to have the specimens further tested, or specifically tested for evidence of measles.

A committee member, Representative Dave Weldon, M.D., of Florida’s District 15, requested from Dr. Stephen Foote of NIH, who was present, to find a way to have these specimens tested promptly. It is not known whether this was done.

A complete cerebrospinal spinal fluid examination including serology is needed. Serum specimens should be carefully obtained and tested for antibodies to myelin basic protein (MBP) and neuron-axon filament proteins (NAFP). Antibody levels of measles virus (MV) and human herpesvirus-6

(Ill-IV-6) should be determined; evaluation of serotonin, serotonm receptor antibody, interleukin- 12 (IL-12), and interferon-gamma (LFN-g) levels would also be helpful.

Testing for urinary indolyl-acryloylglycine (lAG) and polypepfldes is of value both diagnostically and therapeutically, as it identifies those children who would benefit from diet restrictions. Checking for heavy metals is always indicated. Other appropriate testing should be individualized.

Conclusions

There has been a true and significant increase in autism in the U.S. To date, the CDC and other governmental health authorities have not given enough attention to this serious epidemic and its present and future impact. They must face their responsibility now.

Emerging evidence suggests some relationship between MMR and thimerosal-containing vaccines and regressive autism. Additional independent and unbiased clinical studies must be conducted in order to determine all causes involved.

Information about the autism epidemic and its potential causes should be widely disseminated.

F. Edward Yazbak, MD, FAAP, founded TL Autism Research, 70 Viewcrest Dr., Falmouth, MA 02540, tlautstudy@aol.com.

Competing interests: Dr. Yazbak is the grandfather of a boy with regressive autism, typical ‘autistic" enterocolltis, and evidence of measles genomic RNA in the gut wall.

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PUBLIC HEALTH

Autism Reaching 'Epidemic' Levels

[By Joan Lowy for Scripps Howard News Service. Thanks to Kathleen Berry.]

It's one of the worst nightmares a parent can imagine - without warning, a child is abducted from his bed in the middle of the night, never to return.

Now, imagine that instead of taking the whole child, only his mind is stolen and his body - the hollow shell of his being - is left behind.

That's the way parents of children with autism feel, said Hollywood producer Jon Shestack, whose 11-year-old son is autistic.

"If one in every 250 children in America were actually being abducted, that would be a national emergency," Shestack said. "But that is what is happening with autism and it is a national emergency."

Autism - a devastating brain disorder that usually appears before age 3 and affects a child's ability to communicate, form relationships and respond to the world around him _ used to be rare, but is now at least as prevalent as childhood cancer or diabetes. Though the disorder takes many forms, in most cases children seem to withdraw into their own worlds.

In the 1970s, autism was estimated to have affected about 1 in 2,500 to 5,000 children. Studies show it occurs today in 1 in 150 to 500 children. About 1.5 million Americans are autistic. Boys are affected three to four times as often as girls.

Although the phenomenon has been reported across the country and in much of the industrialized world, some scientists believe the increase is due to an expansion of diagnostic criteria and better identification of children with autism. However, a study commissioned by the California General Assembly concluded that the increase cannot be explained away by better data or past misclassification.

Some scientists, public health advocates and parents are calling it an epidemic. The question they are asking is whether some facet of modern society _ toxic chemicals, vaccines, changes in lifestyle or diet _ is stealing children's minds? Relatively little is known about the cause of autism, first identified in 1943. Money for research was almost nonexistent until parents began lobbying Congress and raising funds themselves after autism rates began climbing in the 1990s.

"In 1993, there were probably 12 scientists in the whole country who were lonely and devoted and in a desert working on autism," said Shestack, who helped create the research foundation, Cure Autism Now, with his wife, Portia Iversen.

Autism has long been regarded as one of the most strongly inherited neurological disorders. Studies of identical twins show that if one twin has autism, the other twin will also have autism 60 percent to 80 percent of the time.

However, if genetics alone were the cause the rate would be closer to 100 percent since identical twins have identical genes. Also, genetics alone cannot explain the apparent increases since, scientists say, there is "no such thing as a genetic epidemic."

"The only way you can explain the increase is if there are environmental factors that are strongly expressed and relatively widely distributed in the environment," said Dr. Mike Merzenich, a neuroscientist at the University of California-San Francisco.

Scientists already know that chemical exposure during pregnancy can cause autism. A third of the children of women who took thalidomide _ a drug used in the 1960s to treat morning sickness that is infamous for causing deformed arms and legs _ were also autistic if the exposure took place between the 19th and 24th day of pregnancy, which coincides with the beginning stages of brain development.

"I think it's a fair assumption that it's probably going to be genes plus some environmental factor," said David Amaral, research director of the M.I.N.D Institute in Sacramento, Calif. The mission of the institute, founded by four fathers of autistic children, is to find the causes of childhood neurological disorders generally and autism in particular.

"Environmental factors could play on the brain at any point in time," said Amaral, a professor of medical psychiatry at the University of California-Davis. "It could be maternal ingestion of mercury or postnatal lead exposure _ we don't have consistent enough facts about autism to know ... ."

About 30 percent of autism cases are accompanied by seizures. Infections, immune system problems and food allergies also seem to be involved, along with gastrointestinal problems and sleep disturbances.

Children with other neurological conditions like attention deficit-hyperactivity disorder, learning disabilities and anxiety disorders often have immune system problems as well, scientists said.

The immune system problems are "a very important clue," said Dr. David Carpenter, director of the Institute for Health and the Environment at State University of New York-Rensselaer. "The immune system has functions that regulate the brain function that we hadn't previously understood. For instance, the dementia that comes with age is basically an immune system disease."

Scientists also note that toxic chemical exposure often results in damage to more than one bodily system. The immune system and the nervous system share similarities in that they are both signaling systems.

Likewise, viruses usually affect more than one system and are also a focus of research. Scientists know, for example, that mothers who contract influenza during the first trimester of pregnancy are more likely to have children who develop schizophrenia.

"What frightens me is the number of environmental toxins and environmental influences that we don't know anything about," Amaral said.

More than 80,000 new chemicals have been introduced into the marketplace since the post-World War II rise of the petrochemical industry. In most cases, there is no publicly available test data on their potential neurodevelopmental effects on the fetus and young children through long term, low dose exposure or at critical windows in development.

In the largest study of its kind, researchers at the University of California-Davis are preparing to study 2,000 children _ including 700 children with autism _ to see if there are genetic patterns or patterns of chemical exposure in autistic children that are not found in the general population.

Among the chemicals that children will be tested for are PCBs _ chemicals widely used to insulate electrical equipment but banned in the 1970s because of their toxic effects. Tests also will be done on their chemical cousins, PBDEs, as well as a variety of heavy metals like mercury and lead, pesticides, medications and compounds found in cleaning products, cosmetics and other consumer items.

"We're trying to understand if kids with autism have significantly different levels of chemicals of environmental concern and whether they are more sensitive than the typical child to the same exposure," said toxicology professor Isaac Pessah, who is overseeing the research.

PBDEs are flame retardants widely used in the foam cushions inside furniture and car seats; the hard plastic casings of computers and other office equipment; and hundreds of other products. Little attention had been paid to them until five years ago when Swedish researchers discovered them in the breast milk of nursing mothers. The highest levels recorded by far have been in American women.

PBDEs are of "special interest," Pessah said, "because that is what kids are being exposed to in relatively high levels in their homes. These flame retardants aren't off somewhere in a Superfund toxic waste site _ they are incorporated into computers and many other conveniences of modern life."

Autistic children often show no sign of the disorder at birth and appear to develop normally until about 15 months of age when they suddenly regress, losing the few words and skills they have learned.

Dr. George Lambert, a pediatrician and autism researcher at Rutgers University, has been extensively testing the homes of New Jersey children looking for elevated levels of suspect chemicals that might be triggering the regression.

When his research was briefly mentioned in a local newspaper, he was flooded with phone calls from desperate parents of autistic children seeking to be included in the study, Lambert said. Several parents offered to pay the $20,000 per house cost of the testing if they could be included, he said.

While research into potential environmental factors is growing, the search for an autism gene commands the bulk of the research dollars. Some scientists believe that combinations of as many as 20 genes may be involved.

Still, there are many unanswered questions that suggest more than genetics is involved. For example, why doesn't autism just die out? After all, people with autism generally don't have children and parents of autistic children often decide not to have more children.

"There is a huge component to autism that is genetic," Pessah said, "but that's like saying there is huge genetic component to cancer so therefore there are no chemicals in the environment that cause cancer. You can see the flaw in that logic."

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MMR-Search For A New Vaccine

[From Private Eye, UK.]

The Irish government has awarded a leading Dublin virologist E700,000

($774,000) to develop a new MMR vaccine which avoids the use of three live viruses.

The move comes as take up of the triple jab in Ireland is falling to the same low levels as in the UK because of fears of a link between autism and bowel disease. Prof Greg Atkins, who will lead a team at the Moyne Institute of Preventative Medicine at Trinity College, Dublin, is emphatic that there is no proven link between the MMR triple jab and autism; and he is equally emphatic that the risks of going without the jab far outweigh vaccination. But he does not rule out the possibility of risk to a very small number of children.

In a paper published in Critical Reviews of Immunology, he writes of the work of fellow Trinity College professor John O'Leary, who found measles at the sites of inflammation in the guts of children with autism. "These findings do not prove an association between this type of autism and measles

vaccination: however an association between a small minority of autism cases and vaccination cannot be discounted at present." He said that while some had sought to refute a possible association between the measles component and autism on epidemiological grounds (not least Britain's health chief and

ministers) it is unlike that the studies published so far would have detected the small numbers involved.

While more work was needed to verify O'Leary's findings and their significance, what was clear was that there were known side effects, the most serious including encephalitis meningitis. The measles component had been associated with suppressing the immune system and other research had suggested it may act as a triggering event in rare cases of multiple sclerosis.

Much research had already taken place into the new DNA-based vaccines, but these had not so far proved very effective in preventing disease. However, Atkins plans to use RNA, which makes up the genetic material of the virus itself, as part of a wider E2m research project into virus vaccines for both humans and animals.

The trouble for parents is that it will be years before such any vaccine is fully developed and tested. And the British government - "MMR is the safest way to vaccinate your children" - is still not prepared to allow single vaccines as an alternative to MMR while the controversy continues. Last week it emerged that as well as the payment incentive to keep up MMR vaccination numbers, MMR take-up rates will now form part of "star-rating" performance for doctors and primary care trust in the NHS. Those with low take-up rates will jeopardize their three-star status and may miss out on government cash. Which will only fuel distrust further.

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AWARENESS

How Families Cope With Autistic Children

[By Joan Lowy for Scripps Howard News Service.]

Teachers in the Boulder Valley School District in Colorado began to notice about six years ago that more children with autism were entering classes each year.

Some of the children would rock back and forth all day, not speaking or focusing on anything around them. Others were learning to read in preschool well ahead of most of their peers, but they seemed more interested in letters and numbers than in people. They had trouble communicating and frequently became overwhelmed, breaking down in tears or having tantrums.

"I had one mom ask me at a parent-teacher conference, 'Why is it that my child can read all her letters, knows all her numbers, but can't say, Mommy get me a glass of milk?' " preschool teacher Kathy Morson said.

Autism is often regarded as a personal tragedy _ a rare and mysterious brain disorder that robs children of their ability to relate to other people and their environment, locking them in a world of their own.

The U.S. Department of Education recorded a nationwide average increase of 544 percent in autistic students from 1992 to 2001.

"The numbers are really extraordinary," Thomas Insel, director of the National Institute of Mental Health, told a conference on autism convened by federal health agencies in November.

Autism is a complex and little understood group of brain disorders whose symptoms and severity can vary widely among individuals. Children with autism often don't make or respond to human gestures that come as naturally to other people as breathing _ a smile, a soft word, a kiss. Many don't get the punch lines to jokes or see the beauty of poetry. They may never say, "I love you."

Every parent of an autistic child has a story to tell, a moment that seems to crystallize the trials and heartache of living with autism.

For Jessica Stiles Varma of Elk Grove, Calif., it was the day she decided to do something so simple that most parents never give it a second thought _ take a walk with her two daughters in the neighborhood.

Varma was pushing her younger daughter in a carriage when suddenly her older daughter, Katelyn, who has autism, began to have a meltdown. Her attempts to get away from her mother were so frenzied that Varma had to use both hands and all her strength to hold on to the girl, fearing she would run into the street.

For four hours, Varma sat on a curb clutching her older daughter, the carriage with her younger daughter at her side, unable to let go long enough to get the three of them home.

"Finally a neighbor came along, took pity on us and helped us home," Varma said.

About half of all children with autism are mentally retarded, but many autistic children have normal or even superior intelligence. The share of autistic children who are not mentally retarded appears to be increasing, causing some scientists to theorize that a new form of the disorder is emerging.

The societal costs are staggering. The average child with autism will require $4 million in lifetime supervision and care.

The financial and emotional toll on families of autistic children is incalculable. Many parents devote their lives to caring for an autistic child. Financial resources are drained to pay for doctors, behavioral therapists and treatments. Instead of saving for college, parents plan for and worry about how to provide care for their child after they are gone.

"We've had people lose their homes, mortgage everything they have ... trying to take care of their kids," said Rep. Dan Burton, R-Ind., who has an autistic grandson.

Sue, 44, a Milwaukee mother who asked that her last name not be used, was a political science professor at one of the nation's most prestigious universities before her son, Sam, was born four years ago. Resuming her career became impossible after Sam was diagnosed with autism.

"It's hard to work a day job if you are always having to call a lawyer or doctor or take him to therapy appointments," Sue said.

She recently took a job as a night clerk in a video store because she "wanted to get out of the house" and be among people who didn't know that she had a disabled child or that she was a published author with a Ph.D, Sue said.

Kathleen Berry and her husband, Michael McIntire, of Sacramento, Calif., have spent as much as $50,000 a year of their own money on behavioral therapy and other treatments for their two autistic children, Stewart, 9, and Caroline, 4.

About 30 hours a week of one-to-one therapy that relies on a system of rewards for learned behaviors like how to brush teeth or sit properly at a table has been shown to make a dramatic difference in whether an autistic child is able to attend school in a mainstream classroom and ultimately live independently or whether the child is institutionalized.

Thanks to therapy, Stewart and Caroline are now in school with non-autistic children, but they are each accompanied by a personal aide who helps them if they become confused or takes them aside if they have an outburst, Berry said.

"It's a tremendous amount of work, but well worth it," Berry said. "The alternatives are exceedingly costly and unthinkable."

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