Autism 2002
Mercury, Heavy Metals... Toxicity

Lisa Lewis Ph.D.

Dr. Lewis is Co-founder of ANDI, The Autism Network for Dietary Intervention. She has presented workshops in all over the United-States. In New Jersey, Dr. Lewis has given presentations and workshops at COSAC and the State Department of Education. She often speaks to school districts and parent-run organizations. Dr. Lewis is the author of the book Special Diets for Special Kids and has written many useful articles and brochures on diet related topics. She has an article featured in the book Biological Treatments for Autism and PDD, edited by Dr. William Shaw. She is a contributor to The Autism and Asperger Digest. Dr Lewis is the mother of an autistic child who has benefited greatly from dietary intervention. Her second book will published Fall 2001.
Special Diets for Special Kids
Understanding and Implementing a Gluten and Casein Free Diet

Lisa S. Lewis, Ph.D.

Anyone who has spent time with the parents of autistic spectrum children knows one thing to be true: they are a well-informed, medically savvy group of individuals. In many cases, people with no scientific or medical background are transformed, in a matter of months, into careful researchers. Why is this so?

Generally, when a parent learns that their child has an autism spectrum disorder, they experience shock and disbelief. This passes quickly however, because to get to this point they have already trod a well-established path. It has altered little in the eleven years since my husband and I began looking for answers about what was happening to our child. This route includes:

In our experience, the final step of diagnosis was only accomplished after our own careful reading of the (then current) DSM IIIr. Only after we had "made a diagnosis" were we able to find a professional to confirm it. So the question arises:

 

Why Aren’t Doctors More Helpful?

I would like to believe that doctors today are more helpful than the ones we consulted in 1991, and I admit that I am often accused of "doctor bashing." While there are more and more doctors who are listening to new theories and trying new interventions, the sad fact remains that I receive dozens of letters each week detailing the same old, same old position of allopathic physicians. In short: there is nothing you can do to help you child except intensive applied behavioral analysis therapy.

I think that one of the reasons why more doctors are opening their minds is that, with the recent increase in the number of children on the spectrum, many of them have parents who are physicians! It is probably a lot easier to open your mind when it is your own child’s future at stake, regardless of the educational and professional indoctrination you have received.

It is now common to hear people talk about "paradigm shifts," but this is a fairly recent phenomenon. The first time I ever heard of this concept, I was a graduate student, and I was instructed to read a book called The Structure of Scientific Revolutions by Thomas Kuhn.

According to Kuhn, what is needed for a paradigm shift to occur is generally a crisis. I believe that the vast increase in autism cases has created this crisis. Finally, scientists are proposing new ideas and theories. Parents are at last being given alternative treatments based on the idea that autism is a biological, and not a mental disease.

Amongst these, dietary interventions are at last almost "respectable." Still, most parents find these alternatives without the help of their doctors. Thankfully, the creation of the Internet has made this task much easier than it used to be.

In the case of our child, we began to realize that something was wrong when he was about 20 months old. He did not necessarily lose skills, as many do, but he stopped gaining skills and words. We started an early intervention program even before we had a firm knowledge what was wrong, using speech therapy, occupational therapy, play therapy and a form of ABA. Despite this, we saw increasing aggression, violent tantrums, severe hyperactivity and decreasing sleep. By the age of 3 _ we knew what we were dealing with and by age four, Sam was in an excellent (behaviorally based) autism school.

We were thrilled because we knew that now the "experts" would help us fix these problems. How shocking it was to find that, despite their years of experience, strict ABA approach and home programming efforts, the teachers and therapist were not really able to help us very much.

Sam continued to improve in his cognitive skills, but he was a little dictator to live with and not very pleasant company.

One day, when home from work, I watched "Oprah" and saw what I thought was the answer&endash;Dr. Doris Rapp discussing food allergies. Judging by what I saw, I became convinced that Sam had food allergies. I immediately took him off milk and wheat products and we saw a tremendous improvement. Because Sam attended a data-based, behavioral school, this was not just my ‘impression’; aggressions dropped from double digits to virtually nothing within a week. Other changes that were hard to attribute to the diet, but which were certainly temporally related also occurred. For example, Sam’s perpetually reversed pronouns turned around overnight.

We decided to do some food allergy testing to confirm what we already knew and to our surprise, found that Sam was NOT allergic to any foods! So what could this mean? A little detective work on the (then new) Internet turned up work by European scientists Karl Reichel (Norway) and Paul Shattock (UK). According to the theories of these researchers, we needed to remove the proteins casein (from milk products) and gluten (from wheat, rye, oats and barley). Why?

 

Do You Recognize these Traits?

Oddly enough, while most parents recognize these as symptoms of autism, I took this list of traits from a book about heroine addicts! The questions arises, then, "Why do Autistics Act Like Addicts?"

 

Where Do the Opioids Come From?

If we accept that this is true, the question remains: How do the peptides get out of the gut and into the bloodstream? The gut wall is not impermeable, but if the gut is damaged in some way it can have large spaces between the cells. This is a common condition, but one that is rarely tested for. When the gut is "leaky", it allows for the passage of bacteria, toxins and food. Vitamins and minerals may pass through the system too quickly to be properly absorbed, and if peptides are not properly broken down, they too will pass through into the blood. In addition to the problems caused by the peptides passing through and improper vitamin absorption, the stage will be set for food allergies.

In addition, many children on the spectrum have been found to have raging yeast infections or overgrowths. It is normal to have some yeast in the gut, but under normal circumstances the natural gut flora keeps the yeast population in check. This assumes a healthy immune system that can maintain the balance. When the balance is thrown off, yeast proliferates at the expense of "good" bacteria. Excess yeast waste products may be absorbed from the gut and wreak havoc on the central nervous system. Many things can throw off the balance, but one of the likeliest culprits is overuse of antibiotic medication.

 

How Does This All Fit Together? A Pattern Emerges

 

Has the Opioid Excess Theory Been ‘Proven’?

The opioid excess theory has not yet been proven, if by proof we mean double-blind, placebo controlled studies. However we have good open trial data (http://osiris.sunderland.ac.uk/autism/treat.html), and enough anecdotal evidence to convince even the most skeptical people. This theory "explains" the symptoms but may not be correct.

For whatever reason, for many children there is NO QUESTION that the diet "works," i.e. is a very important intervention. That means, that every parent of an autistic child should try this diet for their children. The kids most likely to respond often have one or more of the following traits:

The symptoms that diet may affect are varied, including but not limited to:

Once you have decided to try this diet, there are many sources of information on how to do it. My book, Special Diets For Special Kids includes a more detailed discussion how why the diet should be tried, and many recipes and cooking hints for actually feeding your family. There are endless resources on the Internet such as www.autismndi.com, www.gfcfdiet.com and more.

While it is hard to be certain, I believe that over half of the child on the spectrum will respond to this diet, and of those, at least a third will make a dramatic turnaround. For children who are put on the diet before the age of two, the chance of full recovery is well within reach. Not all children will respond, and of those who do there will be a great variation in the response. But what if you don’t try it and your child would have improved?

Some say the diet is hard to follow, and at first it is. With time, however, a gluten and casein free diet gets much easier to live with. Can we honestly say the same thing about an autistic child?