More Questions Than Answers In Autism

Researchers are spending more time and money seeking clues to the mysterious brain disorder called autism.

By Sharon Jayson, USA TODAY

The National Institutes of Health is expected to spend $102 million for autism research this year — a five-fold increase in six years.

“We have many more questions than answers right now,” says research
psychiatrist and neuroscientist Thomas Insel, director of the National
Institute of Mental Health and head of an interagency federal panel on
autism.

With its characteristic language delays and aloof behavior, autism may
not be observed until children are 18 months or older. Often, it is not
diagnosed until age 5. There is no cure.

Insel says autism might in fact be “many different illnesses with one
name,” which would account for the array of symptoms, varied times of
diagnoses and different strands of autistic behavior. “These are urgent
questions because we’re talking about a lot of children and a tremendously
disabling brain disease, which really robs a child and a family of the
personhood of this child,” Insel says.

Last month, the Centers for Disease Control and Prevention launched a
campaign to increase awareness about the need for early diagnosis. Early
diagnosis and intervention is considered critical to improve the outlook for
children diagnosed with the disease.

Although much about autism remains a mystery, Eric Hollander, a
physician and director of the Seaver Center for Autism Research and
Treatment at Mount Sinai School of Medicine in New York, says a lot more is
known now than even five years ago.

“Now we know more about basic brain circuits and genetics and about
which treatments work and don’t work,” he says. “There are a number of
well-controlled studies going on now. Until recently, there was not much
funded research in this area.”

What is known, from research on identical and fraternal twins, is that
there is a strong genetic link, Hollander says. No single gene has a major
effect on the development of the disease. Instead, he says, it’s more likely
that several genes have minor effects.

Gastroenterologist Andy Wakefield, who moved from London to Austin to
head a new autism center, also has drawn attention for his theories about an
intestinal disease that he believes produces brain-injuring chemicals in
certain children.

Wakefield, of Thoughtful House Center for Children, believes a
wheat-free and dairy-free diet will improve functioning for autistic
children. He wants Jeanette and Patrick O’Donnell and their five autistic
kids to try it to lessen symptoms.

“There are no miracles,” he says. “What we’re looking for is to
ameliorate the symptoms in the children. No one is offering a cure for
autism.”

Hollander says such diets need more study. “We do know there are
important connections between the gut and the brain,” he says. “But it’s
also pretty clear that autism is not caused by these gastrointestinal
problems.”

Many parents and some researchers blame some childhood vaccines with
the mercury-containing preservative Thimerosal, which they say weakens
certain children’s immune systems. Insel says studies have not found a
relationship with vaccines.

“That does not mean there is no relationship,” he says. “They just
haven’t found one. It’s possible there are rare children who are responding
to either some component of the vaccine or an inflammatory response
concurrent with the vaccine. We don’t know that.”

In the treatment area, there is also debate. Drugs that target
specific disruptive behaviors, such as impulsivity or obsessive-compulsive
disorders, seem to ease some of autism’s symptoms, Hollander says.

Another approach — applied behavior analysis, better known as ABA —
also drawing considerable discussion. It’s a multi-year, one-on-one
treatment that uses positive reinforcement to teach social and language
skills. It is time-consuming and takes years, usually beginning with 40
hours a week of training, often at a cost of $50 or more an hour. Those
costs mount into tens of thousands of dollars, which many insurance
companies do not cover. Some parents have sought financial assistance from
their school districts, even sued for reimbursement in some cases. While
research has shown that the therapy can be helpful, some of the early
studies were flawed, Hollander says, adding fuel to the debate.

Because so many questions are yet unanswered, those who follow autism
research concede it will be a while before many debates are settled.

“I’m not sure if I’ve run into anything related to autism that wasn’t
surrounded by controversy,” says Lee Grossman, president of the Autism
Society of America, an advocacy group.

“I can name any therapy or any intervention and have tremendous proponents for and against.”

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