Autism treatment: Science hijacked to support alternative therapies

23 Nov

Such is the title of the latest article in the Chicago Tribune by Trine Tsouderos and Patricia Callahan.

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.

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18 Responses to “Autism treatment: Science hijacked to support alternative therapies”

  1. Liz Ditz November 23, 2009 at 09:18 #

    As I often do for stories of this type, I’m keeping a running list or index of pro- and con- blog posts. This one’s on the list.

    The list is here

    http://lizditz.typepad.com/i_speak_of_dreams/2009/11/the-unethical-treatments-that-autism-is-vaccine-injury-and-other-false-premises-gives-rise-to.html

  2. farmwifetwo November 23, 2009 at 13:51 #

    I am not surprised at the inflammation one… it’s obvious every time the world gets “too big” for the little one. Risperdal has helped with it – hasn’t happened since we started, motrin has as well. We gave him motrin b/c his reaction was that of a headache or other body pain. It would take the edge off quickly. In our house they usually coincided with large weather fronts… therefore he and I were both suffering from headaches.

  3. Pietr Hitzig November 24, 2009 at 07:24 #

    It is totally unbelievable in 2009 that the director of the Autism center at Johns Hopkins could ever make such an ignorant statement:

    > “It may actually be an attempt of the brain to repair itself,”

    Does he not know that most if not all neurodegenerative diseases have an imbalanced immune system with the proinflammatory in pathologic excess? Does this Dr. Zimmerman actually believe that in Parkinson’s disease, HIV, multiple sclerosis and numerous others the brain is trying to repair itself? Many conditions are associated with T helper cell imbalance. Most are biased towards the inflammatory side. I have reviewed just some of them at my website http://bit.ly/6UpAMe. More than 200 patents have been issued to those seeking to restore this immune balance balance. For a great review, If you are interested in somebody else’s view point, read this review http://bit.ly/5WBFK6

    Furthermore, does Zimmerman even know that the crucial brain chemicals dopamine and serotonin when in imbalance induce this immune pathology?

    I live in Baltimore where I was told early in my medical career that the 3 most over-rated things in life were,”Home cookin’, home f**kin’ & Johns Hopkin.”

    Zimmerman comes close to proving that axiom to be right.

    phitz96atgmail.com

  4. Mike Stanton November 24, 2009 at 09:09 #

    According to Pietr Hitzig

    It is totally unbelievable in 2009 that the director of the Autism center at Johns Hopkins could ever make such an ignorant statement:
    > “It may actually be an attempt of the brain to repair itself,”
    Does he not know that most if not all neurodegenerative diseases have an imbalanced immune system with the proinflammatory in pathologic excess?

    Except that autism is not a neurodegenerative disease. It is a developmental disorder that improves over time.

  5. Tom November 24, 2009 at 14:56 #

    Pietr Hitzig might want to familarize himself with the literature on immune-mediated repair in the CNS before he throws stones. Furthermore, who is more credible Andrew Zimmerman or someone who pushes a very quacky protocol with a very alarming history?

    http://pacer.ca4.uscourts.gov/opinion.pdf/014895.U.pdf

    http://w3.health.state.ny.us/opmc/factions.nsf/0522fed2dd2160ff852568c0004e894a/9eaf8ec2026b214985256a4a0047d64f/$FILE/ATTPOOUO/lc106976.pdf

  6. Tom November 24, 2009 at 16:41 #

    http://www.phoenixnewtimes.com/1998-03-19/news/the-internet-internist/

    As far I’m concerned, Pietr Hitzig has no right to comment on LBRB. Keep him away from autism.

  7. Chris November 24, 2009 at 18:06 #

    Oh wow, thanks Tom. It is nice to know we can completely ignore Hitzig, the ‘father of the fen/phen protocol,’ who has both lost his right to practice medicine and has spent time in jail for prescribing strong drugs over the internet.

  8. FreeSpeaker November 27, 2009 at 03:30 #

    When the woo-meisters hijack good science, the Good Scientist remain silent. They have got to speak up and tell the world that they have been hijacked. When this is done, it will affect the bottom line of the woo-meisters.

  9. dr treg November 27, 2009 at 14:55 #

    “Except that autism is not a neurodegenerative disease. It is a developmental disorder that improves over time.” Severe autism characteristically deteriorates with time in the acute phase resulting in developmental regression.
    Severe autism is characterised by
    1. Immunological abnormalities – published in many papers not just by Johns Hopkins.
    2. Genetic abnormalities – increasingly identified.
    3. Structural brain abnormalities
    i) Macroscopic – increased brain size in first 3 years.
    ii) Microscopic – dendritic spine density abnormalities
    http://www.ncbi.nlm.nih.gov/pubmed/19896929?dopt=Abstract
    4. Clinical hyper/hyposensitivity low I.Q. and obsession-compulsion.
    Autism probably will be confirmed as an immuno-genetic disease in the future if not already.
    I find it interesting that Johns Hopkins deter treatment of autism with traditional immunosuppressants in their Internet site, but that there have been anecdotal reports of improvement with prednisone, IV immunoglobulins and even gold.
    http://www.neuro.jhmi.edu/neuroimmunopath/autism_faqs.htm
    http://www.aheadwithautism.com/research.html
    http://www.plioplys.com/medicine/autism/aut_3_IVIG_1998_article.pdf
    http://photoninthedarkness.blogspot.com/2005/09/coming-gold-rush.html
    A double-blind controlled clinical study of prednisone and IV immunoglobulins could be worthwhile in severe autism.
    I would also be interested in the effect of methotrexate in severe autism in doses used for other inflammatory diseases such as rheumatoid arthritis – but is unlikely to pass an Ethics Committee. Perhaps severe autism will eventually be treated with a combination of immunosuppressants which synergise rather similar to the induction treatment phase of childhood leukemia.
    Meantime rapamycin, pioglitazone and TNF-alpha blockers are being prepared to be trialled in autism based on similar limited evidence but they have Pharmaceutical Company money behind them which traditional generic immunosuppressants do not.
    It must be remebered that only less than 25% of conventional medical treatment is scientifically based and a significant percentage is harmful without benefit.

  10. FreeSpeaker November 30, 2009 at 00:28 #

    “25% of conventional medical treatment is scientifically based”

    If I am not mistaken, that comes from someone who includes surgery in the 75%. It is a bogus claim.

  11. dr treg November 30, 2009 at 23:24 #

    This is the study in the British Medical Journal – not sure of the details of the different treatments.
    http://clinicalevidence.bmj.com/ceweb/about/knowledge.jsp
    Splitting hairs?

  12. Mike Stanton December 1, 2009 at 00:31 #

    I followed the link and was a little perturbed by three things

    The 25% that you cite is not mentioned anywhere in the article. (NB it is an article and not a study. This is a website that summarizes the results of other people’s studies and the article you link to carries no references and so is technically an opinion piece.)

    The figures in the article are different to the figures in the pie chart on the same page. OK some are rounded up and some are rounded down. But it is still sloppy.

    There is no indication of how common the different treatments are. How do the percentages translate into patients treated? If only 8 per cent of treatments are known to be effective but they are given to 80 per cent of patients we would get a very different pie chart. Conversely, what if the 3 percent that are thought to be dangerous are routinely administered to lots of patients?

    Very sloppy.

  13. dr treg December 1, 2009 at 01:23 #

    23% or 25%?
    Article or study?
    Slight variation in study/pie chart figures?
    Which treatments studied?
    The study or article is not about achieving perfection but is used to demonstrate that not all conventional medicine is evidence-based. You may have missed the point somewhat.

  14. Mike Stanton December 1, 2009 at 09:35 #

    Of around 2500 treatments covered 13% are rated as beneficial, 23% likely to be beneficial, 8% as trade off between benefits and harms, 6% unlikely to be beneficial, 4% likely to be ineffective or harmful, and 46%, the largest proportion, as unknown effectiveness

    The point being that for those treatments were Clinical Evidence has reviewed the evidence 24% are rated beneficial, 43% are likely to be beneficial and 15% have a trade off between benefit and harm.

    All new treatments have to be evidence based or they are not funded by the NHS. The alt med crowd introduce new treatments all the time that are not evidence based, and in the case of neuroinflammation in autism, the researchers from John Hopkins have said that their research should not be used to justify this quackery.

  15. maggieaustria February 21, 2010 at 23:09 #

    There is a great video on you tube called “severe autism when there is no answer” The video is made by a man with Aspergers (a fellow aspie) who also has an autistic son. Very enlightening. Youll be surprised.

  16. MT November 16, 2010 at 22:18 #

    I’ve been taking my son to Dr. Neubrander for several months now. My only regret is not doing it sooner. The positive changes I’ve seen in my son are nothing short of miraculous.
    -parent of a 12 year-old Asperger’s kid- Ringoes, NJ

Trackbacks/Pingbacks

  1. Tweets that mention Autism Blog - Autism treatment: Science hijacked to support alternative therapies « Left Brain/Right Brain -- Topsy.com - November 23, 2009

    […] This post was mentioned on Twitter by autism_hub, Autism Hub. Autism Hub said: New post: Autism treatment: Science hijacked to support alternative therapies http://bit.ly/4yPCLR […]

  2. Chicago Tribune leads the way on autism coverage | MNH Kids Camp.com – Ideas & Advice on Child Autism - January 2, 2010

    […] lot of time to prepare these articles. They cite the experts in the field,” notes Sullivan at LeftBrainRightBrain, “Let’s face it, the supposed experts in the alternative medical “treatment” of autism […]

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