Saturday, October 1, 2011

What Hath Andy Wakefield Wrought?

By Steve Levine
Vice President, Texas Medical Association Communications

The sad story of the fraud Dr. Andrew Wakefield perpetrated on the world’s autism community lies at the intersection of my personal and professional lives. Could these latest revelations be the final chapter?

As chief of communications at Texas Medical Association, I promote the fact that physicians rely on good, hard, peer-reviewed science to make medical decisions. We endorse immunizations as safe and effective public health tools that save lives. We publicize the repeated scientific findings that find no relationship between immunizations and autism.

TMA and other medical organizations have spent far too much effort combating Dr. Wakefield’s fraudulent “research findings.” His well-publicized but poorly documented study linked the measles-mumps-rubella (MMR) vaccine to a new pathology he called “autistic enterocolitis.”

Frightened that “the triple jab” would impose the horrors of autism on their normal toddlers, parents first in Britain, then around the globe, began refusing the MMR vaccine. Then all childhood vaccinations became circumspect. Infectious diseases we once had on the run are returning. Polio is back in Asia, and we have an epidemic of pertussis right here in the Austin metropolitan area.

Globally, we’ve spent millions of dollars trying to replicate or repudiate Dr. Wakefield’s findings. Those millions could have been so much better spent on finding new therapies or on furthering the promising research into other causes of autism. How many thousands of children could have been spared if scientists hadn’t been forced to follow Dr. Wakefield down his deceptive rabbit hole?

That’s my professional role. As a father, I have a different perspective. My three children include a 21-year-old son with severe autism. Thankfully, he has a good job. But he never learned to speak, and his disability will significantly limit him for the rest of his life.

Like most other parents of people with autism, I desperately want someone or something to blame for what’s happened to my son. “Desperately” is the operative word.

Autism has no cure. There is little that science can offer other than intensive, individualized education. That works, but it’s hard work. We’ve run an applied behavior analysis program (ABA) for our son for 15 years. He’s made tremendous progress (Did I say he has a job?), but he still has autism and always will.

For some parents, especially young parents with once-healthy children now afflicted by an unknown evil, that prognosis is just too much to accept. They are desperate for a miracle. They desperately want a villain to blame.

As King Claudius said to Rosencrantz in Hamlet, “Diseases desperate grown by desperate appliance are relieved, or not at all.”

And that’s the tragedy of what the British Medical Journal called Dr. Wakefield’s “deliberate fraud.” It led desperate parents to seek those desperate appliances.

Since my son was diagnosed, I’ve heard about so many desperate interventions for the disease. I’ve seen the rise and fall of facilitated communication, which claimed to unlock autistic brains through the power of the keyboard. I’ve seen severely restrictive diets. I’ve become angry at physicians who traded on parents’ desperation by prescribing expensive quack cures like secretin injections. So many parents I know have spent thousands having their sons and daughters’ hair and blood analyzed for so-called micro-toxins and rare minerals imbalances.

As most, but not all, of these “treatments” cause no damage, you might ask, “Where’s the harm?” Just look at the waste of these children’s precious time and the parents’ hard-earned money.

Every month squandered on these unproven, or disproven, treatments is a month of delayed ABA. Every dollar wasted on these unproven treatments is a dollar that could have been spent on therapists who could help turn these children’s lives around.

I’ve met and spoken with Dr. Wakefield. He’s a personable, charismatic man. I can see how desperate parents would fall for this pied piper. I’d like to think he didn’t intentionally cause so much damage.

Like so many other people with autism, my son has a hard time discerning intent. But he can see consequences. And so can I.

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