The article is subtitled: ‘Researchers’ fears about misuse of their work come true’.
Go now and read it. I’ll pull some examples here, but read the article. Send it to your friends. When a writer tells you to stop reading his own piece and go read something else, he means it.
The article reports on how the alternative medical community in autism has clearly misused some research to create and promote supposed therapies.
The prime example, the misuse of work by a John’s Hopkins team on neuroinflammation in autopsied brains of autistics (e.g. Neuroglial activation and neuroinflammation in the brain of patients with autism. by Vargas , Nascimbene , Krishnan, Zimmerman, and Pardo.)
The John’s Hopkins team showed that neuroinflammation was present in the brains of recently deceased autistics. What they did not show was that this was a cause of autism or that this was injurious to the autistics. As Dr. Pardo told the Tribune:
“We were concerned that the study would raise a lot of controversy and be misused,” Pardo said. “We were right.”
In one example from the article, Dr. Rossignol, one of the luminaries of the autism alternative medicine movement wrote a letter to support the use of intravenous immunoglobulin (IVIG) to treat an autistic child. He cites the Pardo study.
From the Tribune story:
Rossignol did not mention that Pardo’s team had written in its online primer, using capital letters for emphasis, that intravenous immunoglobulin “WOULD NOT HAVE a significant effect” on what they saw in the brains of people with autism.
“THERE IS NO indication for using anti-inflammatory medications in patients with autism,” the team wrote.
Another of the Hopkins team, Dr. Zimmerman is quoted:
Meddling with neuroinflammation could actually be a terrible mistake, said co-author Dr. Andrew Zimmerman, director of medical research at the Center for Autism and Related Disorders at the Kennedy Krieger Institute in Baltimore.
“It may actually be an attempt of the brain to repair itself,” said Zimmerman, a pediatric neurologist. Suppressing the immune response “could be doing harm.”
Another alternative-medical practitioner, and colleague of Dr. Rossignol, Dr. Bradstreet is not deterred by the experts in the field who warn him off of applying this experimental and possibly (likely?) useless treatment.
“Every kid with autism should have a trial of IVIG if money was not an option and IVIG was abundant,” Bradstreet said. “It makes sense to try and would be ideal to give every young child a chance at it.”
The Pardo paper has also been used to promote hyperbaric oxygen therapy (HBOT). Another big name in the alt-med world, Dr. Neubrander uses the Pardo study in his presentations and claims that HBOT will reduce inflamation.
Dr. Neubrander appears to acknowlege the slim backing he has on science. In the Tribune article:
“Science is slow,” he said. “I will use the safety of the science and, no, I will not throw the science out the window. But the science has to be balanced against the wisdom. And science says, ‘There is no wisdom from you, the mothers or fathers of the world, who depend on anecdote. Only science has wisdom.’ “
I am at a loss as to how to respond to that statement other than to point out that Dr. Neubrander (and Dr. Bradstreet and Dr. Rossignol) will never, ever be allowed to treat my child.
Again from the Tribune:
Few treatments are completely benign, said Dr. Steven Goodman of the Johns Hopkins Berman Institute of Bioethics. “Even an ineffective therapy is rarely harmless,” he said, “and sometimes that harm is worse than the disease.”
As an example, the Tribune article discusses how pure oxygen, assumed to be only beneficial, was given to premature babies. That is, until it was shown that it was causing blindness in a significant number of children.
The Tribune article concludes by acknowledging the fact that there is not a complete description of what is autism, or how or if it can be treated.
Research into autism has yet to find solid answers, but there is reason for hope, said Zimmerman, a co-author on Pardo’s paper.
“In the last five years, there has been a tremendous upsurge of activity,” he said. “It gives us a lot of new prospects. I think we will solve this problem in the next 10 to 15 years.”
And though autism advocates in the movement say they cannot wait that long for answers, a lack of options isn’t a valid reason to try something, bioethicists say.
“You have a duty to make sure there is good reason to believe it might work and not hurt your child,” said Douglas Diekema, a bioethicist at Treuman Katz Center for Pediatric Bioethics at Seattle Children’s Research Institute.
It is difficult to be patient while science does its work, Zimmerman said. But, he added: “Above all, do no harm.”
This is one in a series of articles on alternative medicine and autism from the Tribune. I hope to backtrack and discuss the previous articles soon. But, the responses are already coming in. Many frame the Tribune as anti-parent, anti-progress, biased…all sorts of things that the article is clearly not. The Tribune obviously took a lot of time to prepare these articles. They cite the experts in the field.
Let’s face it, the supposed experts in the alternative medical “treatment” of autism are clearly misunderstanding or misrepresenting the research they rely upon. The Tribune did the work, talked to the experts and clearly showed this.