WashPost: Autism Vaccine Debate Hits Home For Family

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Autism Vaccine Debate Hits Home For Family

By Shankar Vedantam, The Washington Post

http://tinyurl.com/5vh6bx

In Bethesda, Md., 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. 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.

has autism, and there are tens of thousands of children

like her. Having a child like – 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, " 's father, 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 chairman of

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 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 s to

be put through the suffering that she and her family have endured.

Hotez is the third child of and Ann Hotez. Very

early, the family guessed something was wrong. Ann thought was

not as hungry as other babies. Her cry sounded different. , 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, 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. , 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 Gerber, a Columbia University

autism expert. " There are autisms – there is an autism spectrum disorder. "

's family took her to see one of the country's top autism

experts when she was 2-1/2. She received her first diagnosis:

" pervasive developmental disorder not otherwise specified, " a catchall

term. The family felt adrift. was placing an extraordinary

strain on everyone. There were financial worries.

" was more work than all the other kids combined, "

Hotez said. The illness brought most normal family activity to a halt.

" We didn't go out to dinner for a decade. "

As missed developmental milestone after developmental

milestone, Ann Hotez did what tens of thousands of other mothers would

do in her situation: She blamed herself. She started wondering whether

she had done something during her pregnancy with : Was it the

tuna fish she had eaten?

The link between tuna and autism, moreover, was part of a larger

controversy. Many people were worried about tuna because of fears that

mercury in fish might cause autism. There was another large source of

fear regarding mercury: Many children's vaccines contained a

preservative called thimerosal, a mercury derivative.

Ann told her husband what she was reading about the controversy.

Many advocates believed that increased numbers of vaccinations in

early childhood were linked to the rapidly growing number of autism

cases in the United States. Some advocates believed the problem was in

the vaccines themselves, while others thought the problem was in the

thimerosal and cited evidence that showed mercury was highly neurotoxic.

Hotez responded to his wife's fears in the only way he

knew how. He consulted studies, research, data. He told her about

Minamata disease in Japan, where kids had been exposed to high levels

of mercury. There is strong evidence that mercury exposure in the womb

can cause limb deformities and gait abnormalities. In older children,

it can cause brain abnormalities. To a layperson, that might all sound

like a clear-cut connection with autism, but to Hotez, the

difference between autism and an abnormality caused by a toxin such as

mercury was like the difference between a computer virus that shuts

down all telecommunications in a city and a hurricane. A city deprived

of its telecommunications can be just as paralyzed as a city that has

suffered a natural disaster, but the two kinds of destruction leave

different trails.

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