Endless frustration in search for autism cure

There's nothing worse than seeing a desperate parent, raising a child with autism, believe a cure is at hand.

But in the world of autism, disappointment quickly follows hope as cures vanish, wasting precious time and money.

I know. I was one of those parents.

The anguish parents suffer while caring for sons and daughters tormented by this baffling disability make the yearlong vitriolic debates over President Obama's health care reform seem like, well, like child's play.

With autism now being diagnosed in 1 out of every 110 children in America, its impact on families is profound. Costs are astronomical. A recent study by the Harvard School of Public Health showed that direct medical and nonmedical expenses -- for such things as special education, prescriptions, occupational and speech therapy -- can total $3.2 million over the span of an autistic person's lifetime.

It's clear autism is a national health care crisis unto itself.

When psychiatrists first came up with the diagnosis of autism in the 1940s, they blamed the child's self-absorbed behavior on a cold, reclusive "refrigerator mother." That, of course, is not the case. Experts now define autism as a disorder of neural development linked to abnormal biology and chemical interactions in the brain. The disorder appears during the first three years of life and impairs social interaction and communication.

But why the diagnosis of autism, with its wide spectrum of severity, has grown to such an extent in recent years remains a mystery. Is it solely the province of better skills in the medical profession? Or is there something more sinister at play?

In the 1980s, a miracle drug promised a possible cure. Called fenfluramine, it reduced the level of serotonin in the blood -- a chemical that affects the brain, which autistic children tend to have in higher amounts. But studies failed to prove the drug had any beneficial effects.

Then came megavitamins and special diets; injections of secretin, a pancreatic enzyme extracted from pigs; and hyperbaric chamber therapy. Swimming with dolphins even became the rage. All held promise; all were proven false.

The cure du jour of the early 1990s was Auditory Integration Training. My late son Jed took the treatment when he was 7 years old. It consisted of listening to specially modulated sounds through headphones. By doing so, an autistic child's super-sensitivity to sounds would be controlled and, as a result, improve the child's erratic behavior.

So we traveled to Vashon Island near Seattle and spent nearly $2,000. While our son appreciated being the center of attention, the training didn't "rewire" his brain. Another cure; another flop.

Equally as frustrating have been the failed attempts to divine the root causes of autism.

Most provocative on the list has been the MMR vaccine. Incidences of autism began to rise sharply at the time the vaccine to fight measles, mumps and rubella was introduced in 1971. Also, those children who are later diagnosed as autistic tend to display delays about the time the MMR vaccine is admin-istered -- around age 2.

Adding fuel to the worries over childhood vaccines was the much-heralded research study published in 1998 by the British medical journal The Lancet that claimed there may be a link between the MMR vaccine and autism. Many parents suddenly stopped vaccinating their children.

Fear over childhood vaccinations continues to this day. A recent study released by the journal Pediatrics revealed one in four parents think vaccines cause autism in healthy children -- despite also believing that these same vaccines help prevent diseases.

But like so many aspects of autism, fear and fact are distant relatives.

No credible study has found any link between vaccines and autism. Then came the stunning announcement last month that Lancet was retracting its 1998 report. It was riddled with faulty assumptions. It also turns out the lead researcher was paid nearly a half million pounds by lawyers who wanted to prove that vaccines indeed cause autism.

So has the search for cures and causes of autism reached a dead-end?

Far from it. Another study, released online a few weeks ago by the peer-reviewed medical journal, Current Opinion in Pediatrics, offered this provocative claim: Toxins in the environment may be linked to autism.

According to the New York Times, the study noted the "likelihood is high" that numerous chemicals "have potential to cause injury to the developing brain and to produce neurodevelopmental disorders." If babies are exposed to harmful chemicals in the womb, the end result could be brain defects lasting a lifetime -- in other words, autism.

Though the debate continues in Congress over health care reform, I have heard no mention of autism. Coming to terms with its far-reaching impacts on our society won't be easy. Parents of children with autism know that.

They also know it's a disability that's not going away anytime soon.

* Editorial Page Editor Spencer Hatton can be reached at 577-7704 or shatton@yakima-herald.com.