Inoculated into oblivion
When families hit the Capitol last week, they demanded answers about the source of their children's autism.

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By Arthur Allen

April 13, 2000 |  You couldn't pick a better day for a rally on the Mall. The Capitol gleams white as a Clorox bottle against a sapphire sky. New elm leaves sway in the breeze. Everything is clear and cool and clean, so different from the lives of the families who have come asking the government to find out what happened to their children.

Bob Howley, 43, is watching his daughter Kathleen, a brunet 8-year-old dressed in blue tights and a flowered shirt. Kathleen is intent on something, but it isn't clear what. She is proceeding in a tight circle, slowly pumping her legs like a Lipizzaner on parade. Someone on the soundstage is blaming the Centers for Disease Control for poisoning our children. Kathleen is far away, in the land of strong horses.

Her dad watches, but does not understand. "It's very odd," he brings himself to say. Kathleen seemed normal before she got pneumonia at age 2. When she came home from the hospital, something had changed. At age 3 she was diagnosed as autistic. Since then she's been in a world of her own.

Locked away on psychiatric wards, thought to be unreachable and unteachable, autistic people like Kathleen didn't pose much of a dilemma for society until recently. That has changed in the past several years, as children newly diagnosed as autistic have swamped special education programs around the country.

The number of kids and teenagers labeled autistic rose from 23,000 in 1994 to 54,000 last year, an astonishing leap that suggests something in American life is driving a lot of children crazy. Whether or not those numbers reflect an epidemic or better accounting, they have helped generate a pointed debate about public health in general and the risks of vaccination in particular.

Autism is a range of disorders that share in common an inability to relate to other people. Many autistic people never talk. Others manage to learn rote phrases. Many have odd behaviors, lining up their toys in a precise unfathomable order, compulsively wriggling their fingers. Some feel no pain when they smash their heads into the sidewalk. Some wander into traffic.

For the most part, the origins of autism remain a mystery. The most that can be said is what is said about all chronic ailments -- that it's a mixture of genes and environment. Most parents are baffled by the disorder, which sometimes is evident practically at birth, and other times kicks in in the second year or later.

"It's an enigma," says Howley, an actuary in Maplewood, N.J. "They think there's a genetic basis of it, then other things. It could have been viruses. Or antibiotics. There are so many theories."

It's equally hard to be sure how much autism is really growing. Changing diagnostic criteria, the latest in 1994, have expanded the diagnosis to include kids with milder problems. The 1990 Americans with Disability Act mandated education for these children, ensuring that they are counted and monitored. The Internet brings parents together, raising their convictions and clout.

Many parents at last Saturday's rally, backed by a powerful right-wing congressman and a smattering of research, believe they have found the culprit for as many as half of the autism cases. The guilty party, they believe, is the vaccine.

At a hearing he called to coincide with the Mall rally, Rep. Dan Burton, R-Indiana, invited three panels of witnesses to speak before his Government Reform Committee. The panels were stacked with parents and researchers who believe that vaccines cause autism. Strangely absent were mainstream autism researchers and vaccine experts.

By some odd and tragic coincidence, both Burton and Helen Chenoweth, another fire-breathing, anti-government Republican on the committee, are both grandparents of autistic boys who appeared to be developing normally until they received measles-mumps-rubella and other combination vaccines when they were 15 months old.

The annals of autism research make it clear that a subset of autistic children suddenly regressed at this age long before the measles vaccine became available. But tell that to a parent whose kid goes from bubbly chatmeister to howling mute.

"I and my daughter truly believe this," Burton said at Thursday's hearing. "I just can't believe it wasn't related to the vaccine. When people tell me it's a genetic problem, I'll tell you -- that's just nuts."

"This hearing was called to establish the point of view of the chairman who believes there's a connection between autism and vaccination," countered Henry Waxman of California, the lead Democrat on the committee. "But why should we scare people about immunization until we know the facts?"

Burton's first witnesses were Andrew Wakefield of Scotland and John O'Leary of Ireland, who believe they have shown that autistic children suffering from gastrointestinal problems have measles viruses colonizing immune cells in their guts.

Wakefield, a gastroenterologist, said this suggests that a subset of autistic people may suffer brain inflammation resulting from infections that began in their intestines after they were inoculated with the measles-mumps-rubella (MMR) vaccine.

The vaccine community bitterly contests Wakefield's measles claims. Brent Taylor, who, like Wakefield, serves at the Royal Free Hospital in London, completed a study this year that showed no epidemiological evidence for a measles vaccine-autism link.

Wakefield's studies of the measles vaccine, which appeared in the Lancet, have received enormous press attention in the United Kingdom. Frightened Britons have kept their kids away from the measles "jab," and rates of vaccination against the highly contagious disease fell to about 85 percent last year.

Epidemiologists have been predicting a measles epidemic to result and this week got some confirmation: Ireland reported an outbreak of 300 measles cases, compared to only 30 in all of 1999. Two of the new cases were infants who had to be hospitalized with pneumonia complications.

"My fear," says Benjamin Schwartz of the CDC's immunization program, "is that we could get the same thing here."

Wakefield acknowledges that his is a hypothesis. But he and other researchers believe the public health bureaucracy is circling the wagons around the vaccination program -- a priority of the Clinton administration -- and should put some research money into the question.

Government scientists are skeptical. Wakefield has refused to share his tissue samples with the CDC and "we don't see a credible hypothesis to test," says Schwartz. Noting that most of the data presented by Wakefield and O'Leary is unpublished, he added, "There's a danger in reporting scientific findings at a congressional hearing."

For Schwartz and many others, the fact that a significant portion of autistic kids regress into silence shortly after their MMR shots is just a sad coincidence. "That's not a very easy explanation for a parent devastated by this disease, and I think it points out the importance of us finding a scientific reason why children are autistic," he says.

A small group of scientists hypothesize that low-grade infections caused by live viruses in MMR and other vaccines may overwhelm the immune systems of a small percentage of toddlers. Proving this requires complex experiments in an arcane field called neuroimmunology.

Neurologist Candace Pert and her virologist husband Michael Ruff, co-directors of Georgetown University's Institute For New Medicine, are members of this cutting edge, or fringe, as the case may be. They step lively where most scientists fear to tread.

The idea that vaccines, arguably the top public health achievement of the past half century, are damaging children "is such a horrible possibility, or in my eyes a high probability, that no one wants to be associated with it," Pert says. "And that's tragic because it's all been done in the name of good. But it has to be pinned down. It's too important to be just a philosophical debate."
salon.com | April 13, 2000

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