Autism and snake oil

For me, one of the most interesting things about the retraction last week by the Lancet of its discredited 1998 study linking vaccines and autism was the consensus that those who have believed the study will continue to have faith in it, despite the retraction.

That's why, with the help of Star health reporter Megan Ogilvie, who wrote the paper's original story on the retraction, I began asking around why people clung to scientific studies long after they have been discredited. The result was a story in Tuesday's paper.

I spoke with Jeanette Holden, a geneticist at Queen's University specializing in autism and whose brother is autistic.

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

I also spoke with Paul Offit, a Philadelphia pediatrician whose book Autism's False Prophets takes aim at the anti- vaccination movement, who said that people such as Wakefield offers patients and their families the glimmer of something he and other scientists so far cannot: hope.

And hope can be a powerful thing. "They love him because he offers them something," Offit says.

The story has generated some e-mails to Ogilvie and I, with one reader from the United States this morning passionately defending Wakefield and assailing his critics.

Offit, he says, has a conflict of interest because he created a vaccine and stands to lose financially if vaccines are shown to cause autism. However, Wakefield had his own conflicts of interest, having been paid by a law firm suing vaccine makers to conduct the study. The firm also provided some of the research subjects.

Wakefield was the lead author of the report. He wrote that the parents of eight of the 12 children blamed MMR: they said symptoms of autism had set in within days of vaccination. The Sunday Times has now established that four, probably five, of these children were covered by the legal aid study. And Wakefield himself had been awarded up to £55,000 to assist their case by finding scientific evidence of the link.

Wakefield did not tell his colleagues or medical authorities of this conflict of interest either during or after the research.The children were subjected to a battery of invasive procedures, including colonoscopies and lumbar punctures.

In the months that followed the examination of the first children, many more were channelled through the hospital. The parents of many were clients of one solicitor, Richard Barr, of King's Lynn, Norfolk, who was leading the legal attack and had organised Wakefield's funding from the Legal Aid Board (now the Legal Services Commission).

The writer also disputes the description in the story that autism as "relatively rare," pointing out that diagnoses of the condition have been increasing rapidly. I have no way of knowing, however, if that's due to more cases, or better diagnostics. The write ends the e-mail by saying that parents love Wakefiled because he listens to them, which is essentially what Holden and Offit said.

Holden said the only way such family members might finally break with the vaccine study is if Wakefield himself disavows it. She doesn't, however, expect that to happen.

Comments

[sheldon101]

I am not surprised that parents continue to support Wakefield.

I am surprised by the line in the sand mentality. If you read the decision, http://tinyurl.com/gmc-fact-finding it is clear that most of the children had medical procedures that were not based on their symptoms at the time. That is a strict no-no for doctors. For parents, it is different, they can make the decision to have their child go through this -- but the doctor can't let it happen.

You would think that the parents would say that Wakefield broke the rules but that is understandable considering that no one was helping their children with GI issues. But that's not what happened. They believe he is innocent of everything.

[Dr. House]

How to buy prescription drugs? My doctor prescribed vicodin for a while back, my back hurts, I think it is a great help, but in my country it is difficult to find, it is paramount to have my information on it and found information about findrxonline the medicine, because it provided me.

[Health and safety Toronto]

If there is any “cure” I believe the best treatment out there is to help ensure a strong sense of self confidence and to see autism, not as a thing that makes someone somehow inferior, or a disease akin to cancer, but as something that makes someone different but no less a person. Also make sure to let them know they are not alone. I can’t tell you how much it helped me at age 11/12 to become acquainted with autism advocates that shared a different view than the “doom and gloom” approach the mainstream and medical communities put out.

Each person is born with their own set of strengths and weaknesses. To mature takes building on those strengths and working around and overcoming those weaknesses. One thing I don’t see written much about autism as much as I see the “resistant to change” “very rigid” “non social” and so on, is the very fact these are people. I am autistic, yes, but since I’m aware of my strengths and weaknesses I know I have a choice. I may not like change any more than the next autie, but I can choose to accept the change.

For me I’ve learned it is change that makes no logical sense to my mind or change that affects me negatively that upsets me. Positive change no problem. Bring it on! (As long as I am aware that it is a good change.)
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I believe there are a lot more behavioral aspects to autism and maturity than what the mainstream may like to believe. Honestly I don’t know if those DAN stories are because of the treatment or because the parents may have pushed the children to strive beyond their comfort zone. I find it interesting that even though I grew up without supposed miracle cures, I have improved greatly just like many of the kids described in the stories. There’s a lot that has to go on internally within the person’s mind that will help them more than any outside treatment. A depressed person will have a harder time striving for improvement than an optimistic one.