Diagnosis Made a Difference, But Drugs?

The WSJ Health Blog recently noted that the National Institutes of Health is seeking to "kickstart autism research with $60 million in grant funding from the stimulus bill." Noting that there are "few options for autistic children beyond behavior and diet modifications," the WSJ singles out the possibility of developing medications:

The only drug on the market for the condition — J & J's antipsychotic Risperdal — treats irritability associated with autism, but not the underlying disease. The HHS Interagency Coordinating Committee, which put out the January research plan, likened autism to Alzheimer’s in terms of cost to society, running as high as $90 billion a year.

But while Alzheimer’s is a big push right now for drug makers, few if any novel medicines are being tested now by Big Pharma for autism. One industry-supported study, looking at Prozac, failed last month.

I'm always of at least two minds on the topic of drugs for "treating" autism. My son takes medication (Risperdal and Zoloft) and these help him in some, albeit limited, ways. Medication can be helpful but I think we have to be wary of thinking that there might be some magic pill for autism.

Stories like those of Keith Inman strike a cautionary note about what can happen when giving too much medication. Inman had his first epileptic seizure---a ringing telephone was the trigger---in 1967, but was not diagnosed with autism until thirteen years later, his mother, Nila Sunday, notes. In the March 8th Bloomington Alternative, Sunday says that it was only after attending an autism conference in Indianapolis in 1980 that she first considered that her son might be autistic:

Once she understood that her son was epileptic and autistic, she approached the Monroe County Schools’ special education director for help.

“He said, ‘Oh, no, we don’t have any autistic children in Monroe County,’” she said. “… He just blew me off and wouldn’t discuss it with me.”

Prior to receiving an autism diagnosis, doctors primarily focused on treating Inman's seizures with medications, some of which--phenobarbital and Dilantin--made him worse. Inman remained in special education classes until he was 20 during which a teacher who had some training in autism "changed Keith’s life." Unfortunately more difficult times lay ahead for Keith Inman: In his 20s, he was a residential program where some workers were, according to his mother, "'abusive.'" He now lives at the Stone Belt group home in Bloomington and works at different jobs in the community.

Reading about Inman's late diagnosis, one wonders how his life and that of his family might have been different had he been identified while much younger as being autistic? Or, given the time that he lived in and the services available, perhaps the outcome would not have been too different? Based on Nila Sunday's account in the Bloomington Alternative, knowing earlier about her son's diagnosis would have made a difference; I wonder about how my own son might have been medicated.....I mean, "treated." It doesn't help to learn that, as reported in the March 19th New York Times, Harvard child psychiatrist Dr. Joseph Biederman told the drug maker Johnson & Johnson that planned studies of its medications----including of the antipsychotic Risperidone---in children (including those of preschool age) "would yield results benefiting the company."

It all gives you some historical perspective about how things could have been; about how, though it's not always easy, things today are (a bit) better. Let's make sure the powers that be at the NIH have this in mind in allocating those $60 million in research funds for autism.