A Scientist Wrestles With the Realities of His Daughter's Illness
Tuesday, July 1, 2008; Page HE01
In Bethesda, a 15-year-old girl talks to her television set. Often, she seems more connected to the tube's ghostly embrace than to her own father, mother, brothers and sister. She flushes household items down the toilet. She has no friends outside her family. Rachel does not understand why other people might not want to talk about her beloved Japanese animation shows. She gets angry when anyone shows a lack of interest in the things that interest her.
Rachel has autism, and there are tens of thousands of children like her. Having a child like Rachel -- especially at a time of widespread fears that something in children's vaccines is responsible for surging rates of diagnosis in the United States -- is debilitating, dispiriting, demoralizing.
Many families are worried by allegations that the medical establishment is covering up the risks of childhood shots, possibly because doctors have financial conflicts of interests with vaccine manufacturers or because health officials are worried about the consequences of lowered vaccination rates.
"It is an ever- increasing snowball of horror -- one disappointment after another," Rachel's father, Peter Hotez, says about the challenge of dealing with an autistic child. "You recognize the gravity now as she has become a difficult and impossible teenager."
Hotez's feelings as a parent of an autistic child might seem unremarkable, except that he also happens to be one of the country's more prominent vaccine researchers.
He is president of the Sabin Vaccine Institute, the chair of George Washington University's department of microbiology, immunology and tropical medicine, and a consultant to the Gates Foundation, which is helping to develop vaccines to fight neglected diseases.
The notion that a vaccine expert would deliberately cover up the cause of a growing public health problem cuts Peter Hotez to the quick. That narrative suggests that someone like him -- with firsthand knowledge of the devastation autism can cause a family -- would stand by idly as medical science knowingly allowed thousands of Rachels to be put through the suffering that she and her family have endured.
Rachel Hotez is the third child of Peter and Ann Hotez. Very early, the family guessed something was wrong. Ann thought Rachel was not as hungry as other babies. Her cry sounded different. Peter, who is also a pediatrician, instinctively felt something was amiss with his younger daughter. The family took her to see a pediatric neurologist, who said there were no objective signs of a problem.
Like many parents dissatisfied with early assessments, Peter and Ann Hotez worried that the doctor was not willing to acknowledge the possibility of autism because of the stigma attached to such a diagnosis.
It was also true that science does not have an objective way to pinpoint autism in young children. There is no laboratory test for the disorder and, although it clearly has a strong genetic component (having one child with autism confers a 90 percent risk of being autistic on an identical twin), diagnosis involves a subjective evaluation of a constellation of symptoms that do not always stand out until children are older. There is also a great deal of variation among autistic children. The broad signs of the disorder are a lack of social connectedness, communication problems and repetitive, obsessive behaviors, but those umbrellas encompass a wide range of problems. Rachel, for example, is much more verbal than other autistic children but is severely impaired in other domains.
"It is not one disorder; it is at least several, and there are probably hundreds," acknowledged Andrew Gerber, a Columbia University autism expert. "There are autisms-- there is an autism spectrum disorder."