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One Part Autism, One Part Denial: A Recipe for Scientific Stagnation

Posted Jun 08 2010 12:00am

Money_tp By Katie Wright

Dr. Susan Hyman  is the lead autism researcher at the University of Rochester and holds many important posts within the autism research community.  One of her main research interests is dietary intervention. At a time in which we desperately need innovative thinkers and original research on this issue, Dr. Hyman has spent 10 years summarizing the work of others as well as conducting a few poorly designed clinical trials. All of  Hyman’s studies are virtually the same, reaching the same inconclusive conclusions. Here are some examples. Remember you have paid tens of millions of dollars to learn this information.

2003 “Data supporting complimentary medicine should be scrutinized with scientific study…Families should discuss all proposed interventions with primary care providers.” Tell us something we don’t already know.

2005 “Complimentary medicine used for the treatment of autism is examined in terms of rationale, evidence and efficacy.” Another summary paper, nothing new.

2007 Taste and smell research also inconclusive. “Taste and smell research is needed to determine the neurologic basis of olfactory taste impairments.” No kidding.

2008 “Complimentary medicine commonly used for ASD…Review of current evidence. Some complimentary practices have evidence to reject them whereas others have emerging evidence to support them.” Another summary paper, nothing new.

2010 “There are many possible effects of diet including under and over nutrition that need to be scientifically investigated so families can make informed decisions about their child’s possible therapies.” Right back to the 2003 conclusions.

I still don’t understand how not feeding your child food that makes him sick is “alternative medicine.” The following is an account of how my family made our way to dietary interventions.

No one tells parents that things could actually get a lot worse after the autism diagnosis. My husband and I were told that once we got a high quality ABA/ speech therapy intervention  team in place we would see slow, sometimes very slow but certainly steady progress.

Hopefully Christian would regain his speech and other cognitive skills that he had lost in initial regression just months ago.

Well it did not work out that way. After finding some wonderful therapists, my family was distraught as Christian seemed to becoming more autistic with the passing of every day. Along with this latest regression came; what I refer to as the 4 Horsemen of Autism:

Diarrhea,/Constipation, Screaming, Head Banging and Sleepless Nights.

Anyone who has seen his or her child’s diarrhea burn a hole through a rug or a car seat knows what I am talking about. This isn’t about regular constipation either- ASD kids have been known to go weeks without a bowel movement. It’s incredibly painful and disabling. This is how parents end up trying dietary interventions.

After you visit your pediatrician and a GI specialist, chances are you are back a square one after Miralax and w/ a prescription for reflux meds doesn’t do the job. The screaming and diarrhea are still destroying your child’s life, making him unable to learn. Most likely your child’s doctors are out of options at that point. You are on your own- you always were but know you really know it.

Reluctantly you try the GFCF diet or the SCD diet. It seems like a huge pain but you probably recognize your child’s symptoms in books by Karyn Seroussi, Elaine Gottschall or Julie Matthews and decide to give it a shot. Along w/ the wheat and cow’s milk you remove all processed food, sugar, artificial sweeteners, artificial dyes, pesticide treated fruits and vegetables, excessive salt and hormone injected beef and chicken. Isn’t it funny that the AAP and so many autism researchers are worried about kids who don’t eat this garbage? Ask any parent what their ASD kid was eating BEFORE the diet and I guarantee you a scary answer. Time to join us on planet Earth Dr. Hyman, the diet of the average American kid is atrocious, the typical autistic kid even worse.

Post GF/CF I saw an immediate improvement on the diarrhea front. Christian went from experiencing 10 bowel movements a day to four. His bowel movements were so much less acidic and lost their power to burn through rugs! After a few months Christian’s horrible eczema was 90% better. There were no more hideous, virtually untreatable rashes all over his body. Quelling the itching also helped Christian get to sleep at night. Eliminating high oxalate foods also reduced the candida problem. No more hysterical laughing and clapping at night! Other parents report everything from no improvement at all to the rare, but real, amazing recoveries. My son’s result is typical, Christian still has autism and inflammatory bowel disease but he isn’t living in pain. Christian is so much healthier, no more painful rashes all over his body, no more hugely bloated tummy and no more disabling diarrhea.

The subgroup of kids who are most likely to benefit from the diet are those w/ GI problems, allergies, severe eczema and even autoimmune problems.  These problems are not as obvious as celiac disease but the children have many of the same symptoms and sensitivities. I would refer Dr. Hyman to the work of Dr. Alessandro Spano regarding how the gut of ASD kids respond to certain foods. When Dr. Hyman gathered her subjects for a diet intervention study who did she eliminate from participation? Yes, Dr. Hyman eliminated all children w/ GI problems and allergies. So Hyman’s dietary intervention study was like an insulin intervention project on people without diabetes. Purposeless and sad.

Hyman’s GI study also did not eliminate sugar, processed foods, artificial colorings, ingredients, corn or soy.  It was hardly a dietary intervention at all.  This study was undertaken in 2003, not 1903, a great deal was already known about how some of these foods and additives negatively impact all children, especially autistic kids. At least half of the children in the original group dropped out of the study. That is appalling on many fronts. Primarily it illustrates that the research team choose their subjects poorly or did not adequately stay engaged w/ the parents. From what I understand this was a multi million dollar study. So much for a return on the taxpayers’ investment. In the end only 13 children completed the study- a truly dismal outcome.

The authors of this sad study argue that so many parents dropped out of the study because the diet was too hard. Maybe. What about the another possibility? What if even one of the parents dropped out because they did not like the changes that resulted from the challenges and opted to undertake a real GF/CF diet? I know that the testing examiners found no cognitive differences between the test and control groups, but physical changes are subtler and sometimes slower to emerge.

However, the major problem with the study is how the authors specifically removed all children who were most likely to benefit from the intervention. The crazy reasoning goes as such: because children w/ GI problem and allergies were “sick” it would be unethical to enroll them in the study. I asked Dr. Hyman why it was “unethical” to enroll this subpopulation in the study if they were not already utilizing any special diet? How would this study be any different from clinical trials of abilify, risperdal or the SSRIs regularly tested on autistic children. There doesn’t seem to be an “ethical” problem using powerful off label anti-psychotic drugs on autistic children, it happens all the time! However, replacing cow’s milk with more easily digestible calcium sources and eliminating all processed foods in favor of a healthy diet is “dangerous.” On what planet?

I can’t be the only one who saw “Food Inc”! The importance of eating whole foods and seasonal organic fruits and vegetables is not a “fringe” issue. Michael Pollan’s books are runaway bestsellers.

What is going on in Rochester? Is Hyman’s research team even aware of  the recent study finding that children who ate non organic fruits and vegetables were FOUR TIMES more likely to have ADHD? I wonder who financed Hyman’s dietary intervention study- MacDonalds, Taco Bell, factory farms, Archer Daniel Midlands, crop dusters? Just kidding, it was those geniuses at the NIH. Figures, right?

A day prior to IMFAR I came across a very disturbing e-mail written by one of my heroes, Karyn Serossi author of “Unraveling the Mysteries of Autism and PDD.” After reading literally a dozen autism books and finding nothing relevant to my son’s ASD trajectory (regressions) or his medical problems, thankfully I found Seroussi’s book in 2003. You know when you read an autism book and are thinking to yourself- or shouting out loud as I did- “that’s right!” “My son had the fevers too” “Yes! My son was on antibiotics before his regression too” and “Yes! Christian was totally addicted to milk too!” That book was the first step towards understanding how my son’s diet was connected to his diarrhea and severe eczema and how to help him. The result was a impressive alleviation of his most painful symptoms. I am not alone, hundreds of thousands of kids have been helped by Seroussi’s work. |

So back to the e-mail.  In a letter to Dr. Hyman, Karyn writes how utterly disappointed she was to being cut from the research team after suggesting remedies for the obvious flaws in the study design. Karyn had pointed out that excluding “GI” or “allergy” kids was a mistake and that the diet itself was not the one most parents were using. Apparently the researchers did not appreciate thoughtful input from a parent and expert ASD nutritionist. Team Hyman was determined to carry out their lousy study just had they designed it; in order to find what they believed they would find? In any event the removal of Karyn Seroussi from the team smacks of censorship, anti parent arrogance and agenda driven science.

After paying an unbelievable $575 to attend one day of IMFAR (thanks again for that parent discount-not) Lyn Redwood and I took seats in the front row of Dr. Hyman’s presentation. The room was packed. I felt badly for Lyn, who sat next to me. I was getting some pretty angry looks. Bring it on. After paying $575 I wasn’t going anywhere.

I was shocked at the lack of participation or curiosity on the part of the audience. If Hyman had given this lecture at a DAN! or NAA conference the line for questions would have been a mile long! I guess that demonstrates the difference between those living with these children and those who only read about them in poorly done scientific studies. My first question was why Dr. Hyman conducted a dietary intervention study on children who probably did not need a dietary intervention? My second question was what kind of GFCF diet allows sugar, processed food, artificial dyes and additives? My third question was why was author, parent and ASD dietary expert Karyn Seroussi fired from the study after she pointed out these flaws? My forth question was why were children with allergies, severe eczema (classic symptom of dairy intolerance) excluded from the study when they are most likely to show a benefit? I would have been happy to keep asking questions but “we ran out of time.”

This Hyman study was extremely expensive and look what we got for our money- nothing. Remember when your parents would tell you, “it isn’t how much money you have that is important, but how you spend it.” At the time I was thinking, yeah, right, how dumb.

However, it is so important that our research money be spent more wisely. We need to invest in scientists with original ideas, rather than agendas. We need scientists who welcome parent collaborations, rather than fear them. We need research teams who welcome debate and discussion, rather than engage in censorship. In short, we need research that represents the opposite of everything about the Hyman study.

Please see Karyn Seroussi’s link to all the GI/dietary intervention science (HERE) . These are the scientists toiling away with tiny budgets and little fanfare. Few autism organization scientists have even read any of this. Take a look and forward it to anyone who takes this Hyman study seriously. These authors are really asking the hard questions, doing solid, unbiased research and bravely pushing the science forward.

Katie Wright Is a Contributing Editor for Age of Autism.


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