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Powers That Be Should See the Needs of Frankie
There is good news and bad this holiday season regarding my son, Frankie, and other children like him who have autism.
Frankie is 10 now, and the good news involves his personal progress against the neurological disorder that impairs a child's ability to speak, learn and respond to people.
The bad news involves political shenanigans that could deny many autistic children the costly therapies my wife, Magdalena, and I fought so hard to get for Frankie.
I shudder to think how far behind other children Frankie would be today were it not for the difficult odyssey our family began eight years ago, when doctors diagnosed his autism and told us there was no cure.
At the time, we were so desperate to help our son that we didn't dwell on what might have caused brain damage in an otherwise healthy toddler.
Instead we immediately contacted specialists and studied the work done by autism researchers. This convinced us Frankie's situation wasn't hopeless.
The process of rewiring Frankie's brain has taken us from behavioral therapies to specialized treatment for reading and hearing disorders to gymnastics classes to help him become better coordinated.
When we realized Frankie could not function effectively in a regular classroom, we home-schooled him with the help of my sister.
Frankie returned to a classroom last summer, at a private school in Sherman Oaks that specializes in the education and treatment of disabled or emotionally disturbed youngsters.
Frankie can keep up with his classmates with the help of an aide, but he is still easily distracted. But he genuinely likes school and his teacher. He has even accepted the fact that he must finish his homework before he can play video games -- although not without the complaints of a typical 10-year-old: "Do I have to?"
In many ways, Frankie is so close to normal that it is sometimes easy to forget how far he's come. But the stories of other autistic children remind me.
Many more are being told, now that researchers have confirmed a suspicion I had, that there are many more kids like Frankie than anyone had realized.
In October, UC Davis reported that the number of California children with diagnosed autism increased nearly 300% between 1987 and 1998, an upsurge that is no statistical quirk.
When we first learned of Frankie's autism, experts said one in 10,000 children had the disorder. Today, the estimate is one in 250.
Some public health officials and politicians are pushing for more research to find a cure, but others have cynically moved to protect legally vulnerable rear ends.
I refer to a recent effort by Eli Lilly & Co., the giant pharmaceutical company, to deflect hundreds of lawsuits by parents of autistic children who suspect a Lilly-manufactured vaccine additive, thimerosal, may be a culprit in the autism epidemic.
Lobbyists for Lilly could not persuade Congress earlier this year to enact legislation that would shift the autism lawsuits to a federal vaccine-injury compensation program.
Then last month, just hours before the final congressional vote on the Homeland Security Act, U.S. Rep. Dick Armey (R-Texas) quietly tacked two paragraphs onto the 247-page bill that gave Lilly what it wanted.
Armey says he acted on his own because protecting vaccine manufacturers from costly lawsuits is a matter of national security. "I did it and I'm proud of it," he said. Maybe he'd feel different if, like U.S. Rep. Dan Burton (R-Ind.), he had a grandchild with autism.
"Millions of children across the country were exposed to this mercury-based preservative at a time when concerns about its health effects were emerging," Burton told Congress in an unsuccessful effort to have the thimerosal provision dropped. (For the record, we are not involved in any lawsuits against Lilly.)
Burton and others in Congress will try to revisit the issue when a new Congress convenes in January, by which time Armey will have retired. But excising the provision won't be easy, given that Lilly's chief executive, Sidney Taurel, is an advisor to President Bush on domestic security and a former Lilly executive, Mitchell E. Daniels, is the White House budget director. The close ties between Lilly and the White House make this old political reporter wonder if Armey really was the prime mover behind the amendment.
Whatever answer finally emerges, for now I am grateful Frankie is making progress. If only I could share my hope with the many other parents just now embarking on the long journey to help their autistic children. The road has just been made a little rougher.
Frank del Olmo is associate editor of The Times.