Bush Makes a Dangerous Enemy: Parents

Human Rights

Only 3 years old, and already my son's a lady killer, an absolute knockout; smart, loving, rambunctious and Guinness Book of World Records level cute, flashing the biggest blue eyes this side of Frank Sinatra.

Eight months ago, he joined the growing epidemic of children diagnosed with autism.

The word still numbs me. Maybe we should have seen the diagnosis coming, but we didn't. He has always been such a bright kid, exceptional in some ways. Delays in speech development didn't seem that alarming. Everyone who knows him, including his pediatrician, was convinced that there was nothing seriously wrong. "It just sometimes takes longer with boys," they all said.

So there we were, my wife and I, surrounded by the evaluation team -- speech, occupational and physical therapists, a pediatric psychologist and a developmental pediatrician -- waiting to be told that everything was fine. Except it wasn't.

There's no way to sugarcoat it. Autism is a devastating diagnosis. Approximately 70 to 75 percent of autistic individuals have some degree of mental retardation (50 percent are profoundly limited, with IQs below 50); many never learn to speak, and only about 5 percent are able to live independently as adults. All victims of autism, regardless of their level of functioning, have profound problems relating to other people.

The outlook is brightest for those like my son who are classified as high functioning (my son is so high functioning, in fact, that we still harbor some doubts about the correctness of the diagnosis). This generally implies normal or above normal intelligence. But even this group faces extraordinary challenges. To be sure, there have been some inspiring success stories, like Temple Grandin, a professor at Colorado State University, who despite having autism became an internationally renowned expert on the humane handling of livestock. But such cases are the exception.

Most adults with this level of autism still have great difficultly fitting into the practical world. They have trouble getting and keeping work and are chronically "underemployed" when they do find a job. They also have problems forming and maintaining relationships and tend to lead lives of relative isolation. Even at its best, the diagnosis is a bleak one.

A parent's response is likely to be one of overwhelming grief. It certainly was for us. As I think about it, though, grief is actually a funny word to use in this context since it usually implies that you've suffered a great loss. The son I hugged the night following his diagnosis was the same wonderful kid I had hugged earlier that morning.

From his perspective, nothing had changed. But from our perspective, as his parents, everything had. Suddenly, the future we had imagined for him was gone, swept away by a one-word typhoon. Everything that had once seemed certain and settled was now in doubt and the landscape ahead looked harsh and unjust.

It all seems so unfair. It's unfair that while other 3-year-old kids get to play, our son has to go to therapy sessions, often kicking and screaming. It's unfair that despite his obvious brightness, school will probably always be hard for him. It's unfair that he will likely be picked on as a child (autistic children, because of their behavioral oddities, are obvious targets of children's cruelty). Above all, it's unfair that his future, which should be limitless, is instead clouded.

Along with this profound sense of unfairness comes an equally profound commitment to do whatever it takes to make certain that your child is treated fairly in the future. And it is this commitment, as much as concern over compensation, that explains the extraordinary degree of outrage felt by families of autistic children over the recent Homeland Security legislation.

The basic story is now well known. Flush from their victory in the off-year elections, the Republican leadership couldn't resist the urge to load up the Homeland Security bill with giveaways to major campaign contributors. This pork barrel was added secretly and late in the legislative process, without the knowledge of many members of the House.

Probably the most controversial addition was a package of "liability protections" for the pharmaceutical industry. This included a provision specifically designed to get Eli Lilly off the hook in a number of currently pending lawsuits involving claims that high concentrations of mercury contained in thimerosal, a preservative once used in the measles-mumps-rubella (MMR) vaccine, caused some children to develop autism.

Under the new law, such claims must now first be submitted to a special federal "vaccine court." Any compensation paid by the vaccine court comes not from the drug company itself, but from a special excise tax on vaccines. The amount that can be awarded is subject to strict limits. If a family loses or is otherwise dissatisfied with the outcome before the vaccine court, they are free to then file a lawsuit against the manufacturer in regular court. Obviously, this process can cause considerable delay.

The most appalling aspect of the legislation, aside from the slimy way it was adopted, is the fact it was made retroactive. This means that numerous pending lawsuits will likely be dismissed, forcing families to go back to square one. Also, because of the statute of limitations, some of the victims may be unable to file a claim before the vaccine court. In other words, barring some additional Congressional action, they may simply be out of luck.

There is something fundamentally wrong here. Inherent in traditional American notions of due process and fair play is the belief that legal disputes are to be resolved in courts of law, based upon the evidence, not on the basis of some back room political pay-off.

The Congressional leadership, under pressure from GOP moderates, has agreed to "revisit" this issue next year, whatever that means. But as a lawyer representing one of the plaintiffs whose case is now in jeopardy was recently quoted as saying, "I'll believe it when I see it."

Though my son almost certainly received a vaccination containing thimerosal, I admit I'm still on the fence as to whether thimerosal can be blamed for some cases of autism. Most scientific studies to date, including one just published in the British journal The Lancet, have failed to confirm a connection.

But the issue is far from resolved. The study in question involved a very small sample and additional, more comprehensive investigations will be needed to settle the issue. The National Academy of Sciences, in a report issued late last year, concluded that there is no scientific evidence that either proves or disproves a link between thimerosal and the development of autism. But the Academy also noted that such a link is "biologically plausible."

What's most important, of course, is that whatever conclusion is ultimately reached must be based upon the best scientific evidence available, not on who has the strongest political connections. But there is little reason for optimism, given what just happened in Congress. Right-wing politicians and corporate spokespeople often complain about so-called "junk science." Well, this debacle wasn't about junk science. It was about junk politics.

The Republican leadership didn't submarine the legal rights of autistic children based upon science or evidence. They did so because 73 percent of the $19 million the pharmaceutical industry contributed to political candidates during the 2002 election cycle went to Republicans. Eli Lilly, by itself, contributed $1.6 million, with 75 percent of it going into Republican pockets. The GOP owes Big Pharma big-time. And they've wasted no time in beginning the payoff.

And it's still going strong. Adding insult to injury for the families of autistic children, the Bush administration recently went to federal court to ask that documents generated in cases before the vaccine court, documents that may shed light on the question of whether vaccines have caused autism, be sealed from public view. Part of the justification offered by Justice Department attorney Vincent Matanoski was that releasing the documents could give plaintiffs in later lawsuits "an unfair advantage." So there we have it: Protecting big corporations from lawsuits is more important than providing the truth to the parents of autistic kids.

It's hard to decide what's worse -- the politicians' unbelievable arrogance and the callous misuse of the Homeland Security bill, or the mind-numbing immorality of selling out injured children as part of a political payoff to corporate fat cats.

But then, the GOP has reason to be arrogant. Bush and the Republicans are on a hell of a run. They've beaten the New Democrats. They've whipped the old Democrats. They've clobbered organized labor. They've bludgeoned the trial lawyers and the environmentalists. They're riding high.

But this time their arrogance may have gotten the better of them. There is something about parents (and often grandparents and other family members) of children with special needs that these people obviously don't understand: We're fanatics.

Our kids have already lost so much that we will fight like madmen against anyone trying to take more away from them. And that applies double to politicians. If we have to, we'll crawl down into the political money sewers, grab you by the scruff of the neck, and drag you back up to see the light of day. We'll never give up.

So I'd suggest that the GOP not get too cocky based upon their success so far against the Democrats. They've taken on a tougher opponent this time.

Steven C. Day, an attorney in Wichita, Kansas, is a contributing writer to PopPolitics.com.

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