This blog is a way of sharing the information and resources that have helped me to recover my son Roo from an Autism Spectrum Disorder. What I have learned is to view our symptoms as the results of underlying biological cause, which can be identified and healed. I say "our symptoms" because I also have a neuro-immune disorder called Myalgic Encephalomyelitis.

And, of course, I am not a doctor (although I have been known to impersonate one while doing imaginative play with my son)- this is just our story and information that has been helpful or interesting to us. I hope it is helpful and interesting to you!

Tuesday, May 25, 2010

Autism and the Gut Connection, the Science

It was back in the 1960s that evidence was brought to the late Dr Rimland about the potential of a gluten-free diet to help people with autism.  At the time, he predicted that this would be common knowledge within 15 years.  More than 15 years later, he was contacted by Karyn Seroussi, the mother of a boy who recovered from autism by following a GF/CF diet and the author of the book "Unraveling the Mystery of Autism and Pervasive Developmental Disorder" while researching the almost unknown topic of dietary intervention for autism.  Her book is a classic, BTW, and one of the books that really inspired me to pursue this path with Roo.

Conventional medicine has been so complacent when it comes to treating the often painful "co-morbids" of autism, including the now well-documented GI effects.  Dietary intervention, like most effective treatments for autism, has been pioneered, researched, and promoted by parents of kids with autism.  This has become one of the central aspects of the biomedical approach and has helped so many thousands of kids.  While it's true that much of the evidence is anecdotal, once you reach thousands of anecdotal cases that are consistent and supported by sound biologically based reasoning, this does comprise meaningful evidence.  Conventional medicine seems to have taken on discrediting special diet as a personal vendetta.  They slammed Dr Wakefield for having only 12 kids in his Lancet study (which, BTW, wasn't a study- it was a consecutive case report and as such 11 cases is a legitimate number) while at the same time rallying around studies with as few as 5 test subjects as proof that diet doesn't work.

The most recent study to supposedly prove that diet is not effective in treating autism had only 14 test subjects yet the media and medical establishment is declaring that this is the last nail in the coffin of special diet and proclaiming that parents who continue to pursue this discredited intervention are desperate and misled.  In response, Karyn Seroussi has compiled this list of abstracts of peer-reviewed, published research that supports the efficacy of special diets in treating autism.  There is so much to say about this study in particular and the larger question of how best to use special diets in treating spectrum disorders, which BTW is a quite a complicated issue.

Gluten-free, casein-free is a good place to start, but most kids need the diet to be customized to their specific issues.  Additional diet restrictions and special diets that can be "layered" on include SCD (Specific Carbohydrate Diet), FAILSAFE diet, Feingold diet, low oxalate, low salicylate, low glutmate, low sulfur or low thiol,  low histamine or other -amine, low phenol, yeast-free or low-yeast, GAPS (Gut and Psychology Syndrome), as well as avoidance of any IgE or IgG allergens.  There is so much to say, but this post, written by the father of a child with Asperger's says so much of what I would say.

I've been asked by quite a few relatives and friends why the medical establishment would be so opposed to the use of special diet to treat autism.  I'm sure it's a complex question, and I'm sure there are many answers, but I think that it basically comes down to 2 things- 1) the fact that diet works for so many kids takes you down a road of inquiry into the biological underpinnings of autism that is very inconvenient to many people, and 2) who do a bunch of parents think they are to come up with an effective treatment when they haven't gone to medical school?  As the response to the latest study shows, it is still up to parents and a few dedicated professionals to continue studying and advocating for this safe and effective intervention.

Since I wrote the above part of this post, the FDA has approved clinical trials of an enzyme that aids in protein digestion as a treatment for autism.  There are several fascinating things about this- for one, they site the work of Dr Wakefield as part of the scientific basis of this approach to treating autism, and second, they are specifically saying that this enzyme is for treating the symptoms of autism itself, rather than just saying that it treats the digestive issues that are co-morbid with autism.  That is a big step forward in recognizing that autism is a physical, medical illness not a mental illness. 

A post on the blog The Autism Epidemic and Related Issues give and excellent summary of the background of gut issues in autism, from signs of gut disease in Kanner's first 11 cases, to research that has found that 70-80% of people diagnosed with autism have bowel disease, to a discussion of the bowel disease that the children in Dr Wakefield's 1998 Lancet paper suffer from.  At the end there are also videos of the parents of the "Lancet 12" as they are called speaking on behalf of their children. It' very moving and I appreciate that he chose to include that.  The site also includes citations of research that support the findings of gut issues in people with autism.

More  references and information:

List of research regarding the gut and special diet in autism from the blog Mrs Ed's Research and Recipes