The allure of snake oil for parents of autistic children

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The allure of snake oil for parents of autistic children

February 9, 2010

Stuart Laidlaw

Ogilvie

Jeanette Holden remembers her parents struggling to comprehend why her younger

brother had autism.

Family vacations could be a desperate search for someone, anyone, who could give

them some answers, and maybe cure the boy.

There's even a vague memory of taking Jim, now 57, somewhere in Europe they'd

been told had curative waters, in hopes of miraculously washing the autism away.

" Parents are so vulnerable, " says Holden, today a geneticist at Queen's

University specializing in autism.

" To find some answers, they cling to anything. "

As a scientist, Holden knows every rational reason why a discredited 1998 study,

by Wakefield of London's Royal Free Hospital, linking autism to vaccines

is poor science – vaccines have no connection to autism, she says – but can find

little fault in the families of autistic children who remain loyal to it. " This

does provide some sort of an answer, " she says.

Experts say last week's retraction by The Lancet will do little to dissuade

those who blame a measles, mumps and rubella (MMR) vaccination for their child's

autism, especially among those who see a conspiracy by MMR backers.

Since publication of Wakefield's study, there has been a growing

anti-vaccination movement around the world, attracting the likes of Hollywood

actress and Playboy bunny McCarthy, and leading to a drop in vaccination

rates and a jump in measles cases.

Dr. Evdokia Anagnostou, a child neurologist at Bloorview Kids Rehab, says

parents who have become passionate activists on behalf of their kids with autism

should not be too quickly dismissed.

" They have managed to bring a relatively uncommon disorder into the forefront, "

says Anagnostou, who leads a clinical research program in autism at Bloorview.

" Money has been allocated to research because of activism, awareness campaigns

have been launched because of activism. It has been a huge advantage to the

autism community to have parents who are activists. "

Holden says such families need hope to get them through the struggles of their

daily lives, and science so far can offer little in the way of a direct

cause-and-effect for autism – as the Wakefield study seemed to.

Sadly, she says, some parents might also want something or someone to blame,

rather than believe that it could be their own family's genes that gave their

child the condition.

" We want everything to be perfect, " she says. " And if something isn't, we don't

accept it as readily. "

Offit, a Philadelphia pediatrician whose book Autism's False Prophets takes

aim at the anti- vaccination movement, says parents of his patients fear they

are giving up on their child if they don't look for a cause and a cure for

autism.

That, he says, is where Wakefield came in. " They love him because he offers them

something, " Offit says.

Such willingness to believe junk science stems from an overall low scientific

literacy, says University of Toronto astronomer and science education expert

Percy.

The Internet, he says, feeds people with all sorts of questionable facts and

theories but does little to help them put it all together in a rational way.

" The shallowest learning is simply knowing facts, " he says, drawing on writings

by the late education theorist Bloom. " The highest is being able to

evaluate those facts. "

Offit warns that, besides the danger inherent in refusing vaccinations, parents

in constant search for a cause and a cure risk delaying the all-important

therapy that could help their autistic children lead a better life.

After his book came out two years ago, Offit was attacked by the

anti-vaccination movement as a shill for the drug companies. But he also

received more than 800 letters and emails from parents of autistic children

thanking him.

They hoped that, if Wakefield's study could be discredited, more time and money

could go into finding the real cause of autism and into early detection of the

condition, which would improve the lives of the children and their families.

He laments, however, that such work gets little attention. It's conclusions are

slow in coming and complex, so elicit little public excitement – something Offit

would like to see change.

" These are the real heroes, " he says. " Not Wakefield. "