Autism's lonely questions

Autism's lonely questionsby The Oregonian Editorial Board
Friday May 15, 2009, 12:33 AM

Without better research, Oregon families will keep exhausting themselves looking for answers

If any medical condition warrants more attention and research, it is autism. The uncertainty surrounding this common brain disorder takes a terrible toll on families -- especially in Oregon, where diagnosed autism rates are higher than the national average.

It is a condition characterized by questions rather than answers: Who will help us? Will I ever connect again with my child? How much hope should we have? Do any treatments work, and what if we can't afford any of them?

No family should have to face these questions alone.

About 1 in 150 children in the United States has an autism spectrum disorder, according to the Centers for Disease Control and Prevention. The rate in Oregon is considerably higher. Some estimates based on school data peg the number as high as 1 in 87.

Behind the numbers are a thousand stories of parents struggling to cope. They are told the disorder is incurable, but lately they've been peppered with stories of miracle cures. They read about various promising behavioral treatments, which tend not to be covered by health insurance or offered through the local public school.

They are told autism is biological. Or maybe environmental.

On top of all that come the dirty looks at the grocery store.

Perhaps this helps explain why disagreements within the autism community can be so fierce and personal. The stakes are so high, the parenting can be so lonely, and the research is still so thin.

Portland State University is hosting a statewide conference this weekend about educating children with autism. The keynote speaker, Dr. Laura Schreibman, is a longtime advocate of basing autism treatments on good science and not on anecdotes and testimonials. She's a controversial figure herself, at least among people who think she dismisses promising new treatments.

But Schreibman brings up the right point: The need for better autism research is painfully clear.

The federal government is preparing to invest $1.1 billion in "comparative effectiveness research," which will evaluate and rank various therapies for different health problems. The Obama administration also intends to boost funding for medical research in general.

It's not clear whether autism will be treated as a priority area, but it should be. Without better methods to diagnose and treat autism, and without a better understanding of what causes the disorder, families will continue to bankrupt themselves looking for homegrown cures. These families need more guidance. So do the health insurers and school districts that are supposed to act as partners.

We don't know the answers.

We're still learning the right questions to ask.

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