Autism's New Face
Increasing Numbers Of Children Suffer Mild and Treatable Symptoms of Disorder
By David Brown
This is not a high-end enrichment program for children of the suburbs. This is the new face of autism.
"Can you hold your pencil correctly, please?" says Wanda Watson, an occupational therapist, as she gently repositions the boy's hand. They get to H, deep into the land of attention and coordination.
In a minute, the two are on the floor. Watson pushes a rubber roller along the boy's leg, helping him tolerate firm touch. "Do that again," he says at one point before withdrawing his leg at the last moment. The ambivalence, however, doesn't last long. Soon he is laughing as his mother and sister pat him enthusiastically in a game of duck-duck-goose.
Autism, a disorder marked by social isolation, uncommunicativeness and strange repetitive behaviors, once had a different face. Its sufferers were the mute, endlessly rocking residents of hospital back wards, or the near-mythical "idiot savants," equally withdrawn but possessed of some rare talent.
Now autism includes lots of people like Westin Beveridge. They are children whose symptoms are mild and treatable, although not likely curable. Across America, they are being found in epidemic numbers.
Nationally, the number of children and teenagers labeled autistic rose from 23,000 six years ago to 54,000 in the last school year. In Maryland, the number of special education students with autism served through public schools has more than doubled from 697 in the 1995-96 school year to 1,880 in the current one. In Virginia, the number doubled in six years to 1,521 in 1998-99, the last year for which data are available.
The number of autistic children in District schools is far smaller, with more year-to-year ups and downs than in larger school systems. Nevertheless, the trend here also appears to be upward.
Although the disorder still accounts for just a tiny fraction of childhood disabilities, the increase is virtually without precedent. But are there truly more autistic children than there used to be?
Some researchers and parents say yes, and they suspect that environmental toxins or childhood vaccines are causing the increase. Other experts, however, believe the numbers are rising steeply because children previously labeled with other disabilities--or missed altogether--are now being moved into the right diagnostic category.
"In my heart of hearts, I think there's an increase," said Margaret Bauman, a prominent autism researcher at Harvard Medical School. "I'm probably biased because my practice attracts that kind of child. But from my own practice, I'm swamped. I don't know what accounts for it."
The idea that children are being diagnosed autistic who once would have been considered merely eccentric seems unlikely to Karen Beveridge, 39, the mother of the Kensington child.
"Believe me, Westin could have been born in 1850 and alarm bells would be going off," she said. "You don't get better at diagnosing this. I would be shocked to find that there isn't more around."
If it turns out that the prevalence of a serious, often disabling neurological disease is doubling every five years, the United States is facing a public health emergency.
On the other hand, if the increase is simply the result of a broader definition--and clinicians' improved ability to recognize the condition--then the trend actually may be good news. It means that many autistic children will no longer be overlooked. And it means the demand for services--which cost between $30,000 and $200,000 a year, virtually all paid by public funds--eventually will flatten out.
Although nobody knows what to make of autism's growth, it has drawn a lot of attention.
Two years ago, the federal Centers for Disease Control and Prevention (CDC) established the country's first formal surveillance program for autism, in metropolitan Atlanta. Last year the California state health department told the state legislature that the number of autistic children in the public schools had tripled between 1987 and 1998 and that the continuing upward trend will require "new and abundant resources." Some of the growing number of families touched by autism will rally on the Mall on April 8 in an event called "Hear Their Silence."
To the dismay of many public health officials, the rise of autism is fueling a small but vocal movement that questions the safety of childhood vaccines. While there is little or no evidence that they cause autism, many parents still have doubts.
"I don't know why Westin is autistic," Beveridge said recently. "I don't know if it was or wasn't vaccines. But until they can tell me why, I'm erring on the side of safety. He's not going to have them."
The House Government Reform Committee plans a hearing April 6 to explore this hypothesis. The chairman, Rep. Dan Burton (R-Ind.), has a 3-year-old grandson whose autism he attributes to vaccination.
Autism is a neurological disorder that appears to arise from errors in fetal development. It is three to four times more common in boys than in girls, and it is usually apparent by age 3.
The disorder's most striking feature is profound social isolation. Autistic children classically dislike being touched or looking people in the eye, and they seem to take no pleasure in sharing experiences with others. Autistic children also experience delayed speech (and sometimes an absence of it). In addition, they often have an odd attraction to repetitive behaviors. A child may like to twirl endlessly. He may be fascinated by a specific sound--in Westin Beveridge's case, it was a neighbor's leaf-blower--or a single moving part of a complicated toy.
Recent evidence suggests that early and intensive treatment, much of it one-on-one, can markedly improve the social functioning of autistic children. Historically, however, even "high-functioning" ones remain disabled in subtle or obvious ways through adulthood.
The idea that autism can vary greatly in severity is a major insight of recent decades--and helps explain why counting the number of autistic children has been so difficult.
Over time the condition's definition has been expanded, increasing the number of children who are classified as having a "pervasive developmental disorder," which includes autism. There also is significant overlap with other neurological conditions. About 75 percent of autistic children have some amount of mental retardation, and one-quarter have epilepsy. So the possibility of misclassification--especially for a child with borderline symptoms--is real.
For whatever reason, estimates of autism's prevalence vary wildly. Two scientific analyses published last year came up with divergent best estimates--18.7 cases per 10,000 children, according to one researcher, and 40 to 50 per 10,000, according to another.
A recent paper by two British epidemiologists suggests the skyrocketing numbers being seen by U.S. public school systems actually may fall within the range predicted by some European studies. They used 91 per 10,000 as the prevalence of children who meet, or just miss, the definition of an "autism spectrum" disorder. Although that is an extremely liberal estimate, the current enrollment of autistic children in California, the state with some of the best and most alarming data, is still smaller than the British study would predict.
So it is possible California (and every other place in the country) is simply playing catch-up with a group of neurological disorders that were never as rare as people thought.
On the other hand, it could be that the true biological risk for autism is changing. That possibility has parents--and researchers--casting around for things that are different now from the past. Vaccines are one of the things on the list.
In 1998 a British researcher reported on 12 autistic children with intestinal problems. He speculated that the childhood vaccine that contains weakened measles, mumps and rubella viruses caused a low-grade infection that decreased the children's absorption of nutrients, which led to their disability.
This theory has now been largely refuted. An epidemiological study from London showed a steady rise of autism since 1979, but no jump when the measles-mumps-rubella vaccine was introduced in 1988. It also found virtually identical vaccination status of autistic and non-autistic 2-year-olds. A Swedish study found no difference in prevalence of the disorder before and after the vaccine's introduction.
Many parents, however, are convinced that if not that specific vaccine then maybe multiple vaccinations per se are somehow disordering the immune system and causing autism. Critics of this theory say the relationship between the first appearance of autistic symptoms at about 18 months and numerous doses of vaccine given shortly before then is nothing but predictable coincidence.
Other theories have come and gone. A half-dozen studies suggesting that autistic children are more likely to be born in March or August than other months have now been disproved.
Recently a team of researchers in Baltimore reported a higher-than-expected prevalence of autoimmune diseases in relatives of autistic children. Some people believe as-yet-unidentified environmental toxins may explain both problems.
The federal Agency for Toxic Substances and Disease Registry recently finished a study of Brick Township, N.J., a community north of Atlantic City where the childhood prevalence of autism is reputed to be 1 in 200. Although the agency's final report (and a formal prevalence survey by the CDC) will not be released until later this spring, a registry scientist, Tomas Mignone, said recently that the town's water system, which supplies all residences, meets state and federal purity standards and that no unusual airborne pollutants have been found.
Perhaps the strongest evidence against a postnatal cause of autism is the autistic brain itself.
"The changes observed have varied, but none has ever been reported that could have occurred even in late gestation, or after birth," said Patricia Rodier of the University of Rochester, who has studied brains of autistic people.
What seems certain is that genetic predisposition plays a huge role in determining who develops autism and who doesn't.
If one child in a set of identical twins is autistic, there is an 80 percent chance the second child will be too. Siblings of autistic children have about a 5 percent likelihood of developing some autism-spectrum disorder--far higher than would occur by chance alone. (However, those numbers also prove that genes aren't everything.) At least a dozen genes help lay the groundwork for the disease, scientists believe.
In an effort to promote research on the genetics of autism, an advocacy organization called Cure Autism Now two years ago set up a depository at Rutgers University where DNA samples from about 450 families with autistic members are stored. Gene sequences, as well as behavioral inventories, of the autistic people in the database will be made available to researchers worldwide through the Internet.
© Copyright 2000 The Washington Post Company