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CHAPTER 10
What To Do? Where To Start?
If there was one thing I had learned from reading about and living through autism in the last year and a half, it was that autism was not hopeless. I could truly make a difference for my child.
The other thing that I learned was that autism was “big business”. I was sure many children have been “saved” due to various techniques such as those of behavior modification, and for those parents, I was extremely happy. However, today, given the well documented fact that autism appears to be linked to a child’s inability to process gluten and dairy proteins, I could not help but think that behavior modification techniques simply masked a problem and did not get at the underlying roots. What I found particularly troubling, as I read about autism, was that based on the book I was reading, the “big bucks” sentiment grew more and more within me. For example, if I read a book on autism where the approach was behavior modification, even though that book had been written in the last 3 years, there was little mention of anything having to do with diet. An entire book on behavior modification may have one paragraph stating that “scientists have hypothesized everything from lack of bonding with the mother, diet, genetics, etc. ” under the section dealing with what “causes” autism.
I found it truly irresponsible and unethical for some of these so called “professionals” to not go into the research that now clearly showed these children could not digest gluten and dairy products. I was not saying that all behavior therapy books were like that, but many were. I became very suspicious of behavior modification books that did not also suggest a casein and gluten free diet. Behavior therapy programs for autistic children could cost anywhere from $35,000 to $50,000 a year (and those were estimates we had read about in March of 2000, close to two years ago from the time of the writing of this book). I approached all books cautiously. I was critical of everything. I always kept in mind the author, what they were advocating and how they profited financially from their books/suggested therapies. Zachary had already been a victim of the “all mighty buck” as far as I was concerned and I was not about to let that happen again. If drug therapies were suggested, I wanted to see empirical results. How successful had they been? What else was involved? It was sad to say, but given everything we had been through, I trusted very few people with Zachary’s care. I would be the one who had to deal with him my entire life if my decision was not the right one for him. And after me, the burden could possibly fall onto Anika and that was something I desperately wanted to avoid.
The fact was, I knew my child best. I knew I would never consider institutionalization. I looked for alternatives that did not mask but rather addressed the underlying problem. We had gone through enough “masking” to last us a lifetime. We were not going to choose the “easiest route short term”. We would go with what we honestly felt was in Zachary’s best interest long term.
When Fred and I first discovered Zachary had autism, we had immediately asked for the names of well-known behavior therapists in our area. I had read of children being saved by some of these programs although I did not agree with all the techniques used. We most likely would have considered some behavior therapy had this option been available to us at the time but both offices had long waiting lists. In addition to having a B.A. and an M.A. in Finance, I also had a B.A. in Psychology and had done enough graduate level work in Psychology (two years in General M.A. program with Psychology, Business Writing and French emphases) to understand behavior therapy quite well. It was during my studies as an undergrad in Psychology that I had also taken a course in neurology. Little did I realize that all of these aspects of my background, together, would later help me understand my son and autism, in general.
Having read everything we did, Fred and I felt Karyn Seroussi’s book explained so much of what we saw in Zachary...so many of his symptoms. We pinned our hopes on dietary intervention. If gluten and casein acted like drugs or some other hallucinogen on Zachary’s body, I was prepared to do everything to remove those “drugs” from his system. That theory most certainly would explain why these children with autism, like Zachary, acted as though they were in a “drug-induced”, almost “trance-like state”. That was probably why so many of these children woke up screaming at night, most likely experiencing “bad” hallucinations. It potentially explained why so many children hit themselves on the head, hit their eyes and ears and hated to be touched. Were they trying to do away with what they were “seeing” in their brains, what to them, appeared to be no less than a “demonic reality”? After all, many a person who was high on drugs was afraid to be touched…afraid that the demons they saw in their heads were also those trying to physically grab onto them. Not all “drug trips” were good. It all seemed to make sense now. It was not “lack of bonding” with the mother that was the problem for these children...holding therapy, I thought to myself, would not take away the “demons” these children must see inside their heads. I had to take the “demons” out!
To take the “demons” out, I first had to know how they got there. As I read more, it became clearly evident, that yeast infections or Candida overgrowth was at the root of the problem for most of these children. Many autistic children, just like Zachary, had medical histories outlining occurrence after occurrence of earaches. Unfortunately, in today’s society, a parent’s first “fix” for earaches, as was mine was, too often to put a child on antibiotics. The broad spectrum antibiotics available today cured the earaches but allowed for the oncoming of autism as the beneficial bacteria of the intestinal walls were killed by the antibiotics used to do away with the earaches. The result was that due to the killing off of beneficial bacteria in the intestinal walls, there was a yeast (often Candida, but may be another strain) overgrowth for many of these children. Yeast overgrowth can be a difficult thing to diagnose. As outlined in Dr. Shaw’s book, Biological Treatments for Autism and PDD, pages 68-69, when he speaks of diagnosing yeast disorders:
“Why is Candida such a problem to diagnose? The condition that occurs in most children with autism in not technically an infection, it is really an overgrowth of the intestinal tract. Furthermore, the yeasts do not colonize the intestinal Tract in an uniform fashion. Instead, they usually form Clusters or nests. Sometimes, they settle in the crypts of the Intestine, which are small out of the way “side pockets”. Therefore, failure to detect these organisms by endoscopy Examination (examination with a long tube into the intestinal tract) of the intestinal tract does not rule out their presence… The real question is not whether or not an individual has Candida, but rather how much Candida is there.”
Karyn Seroussi’s book explained that this yeast overgrowth must somehow “bore holes” in the intestinal walls, allowing the proteins of gluten (found in most grains) and casein (present in dairy) to escape and somehow get to the brain causing the hallucinogenic state and most likely the whole slew of other symptoms associated with autism, symptoms affecting senses (i.e., sight, touch, etc.) and perhaps other areas of the brain associated with socialization, ordering, etc. as well.
UPDATE: Dr. Hugh Fudenberg, a world leading immunologist (13th most quoted in the world) states that yeast overgrowth is most likely not be the cause of "leaky gut" issues such as this. Note that aluminum is also present in vaccines. Aluminum is known to not only increase the blood brain barrier permeability, it also very much appears to increase the permeability of cell membranes in general. Perhaps this is something that contributes to "leaky gut" in these children. For more on this issue, please read Book 3 posted in full on my website or visit Dr. Fudenberg's website. In his paper entitled The Typical Course Of An Autistic Patient, Dr. Fudenberg states under Point 7 - and I quote:
"Candida is not the cause of increased intestinal permeability, except in rare instances, since substances passing into the body enter via the small intestine (jejeunum) whereas Candida is almost always confined to the large intestine ( but if present in jejeunum, can be life-threatening)." [end of quote, Typical Course of An Autistic Patient, Dr. Hugh Fudenberg, http://www.nitrf.org/autistic.html ".
Personally, I don't doubt these children have yeast overload that needs to be addressed... I just question whether or not it is what is truly leading to "leaky gut". The microflora being discussed in all these issues of yeast overload are the very organisms the body needs to help excrete things like mercury (per the Aluminum Transcript - See Another Piece To The Puzzle for more on this critical issue) END OF UPDATE.
The fact that we were a society that tended to reach first for antibiotics and ask questions later no doubt had contributed to the fact that today, we saw so many more children with autism. Dr. William Shaw who wrote Biological Treatments for Autism and PDD, showed that in the last twenty years, the incidence of autism had at least doubled, with boys being affected more often than girls.
Had it only been coincidence that the new MMR2 vaccine that had human cells from an aborted fetus cell line in the “rubella” part of the vaccine had come out in 1981, also 20 years ago? Perhaps. Who could say for sure? I wondered, why boys were more impacted ...then I wondered what the sex of the aborted fetus had been...had it been a female? Thought after thought went through my mind? If cows were getting mad cow disease from eating the parts of other cows, then why would children not get sick from being injected with another human’s cells? It was all speculation, of course...absolutely no proof for any link between autism and MMR vaccinations! When faced with an unexplained illness such as autism, I found it was easy to speculate as to the “why”s... but, again, the fact remained that there was no proven “cause/effect” between the MMR2 and autism. All I had were questions...and more questions! What I did know was that yeast overgrowth was a problem in many autistic children. The question for me now became, how do you stop the yeast overgrowth and begin to heal the intestinal wall?
There were several ways to kill Candida or yeast. For example, Nystatin was a prescription drug available to kill yeast overgrowth. Preferring not to put my child on any prescription medication, however, I chose to go with something else. I thought I had read that Nystatin contained all natural products but I could not remember for sure. The fact that it required a prescription did not appeal to me personally. I found that I could use cranberry extract tablets or garlic (Kyolic) to aid in killing yeast naturally. Also, Dr. Doris Rapp, M.D., who wrote “Is This Your Child?”, another excellent book, on pages 444 through 450, provides effective ways of dealing with yeast. Natural yeast inhibitors or killers, according to Dr. Rapp, include broccoli, horseradish, kale, turnips, and cabbage. Of course, these were all things Zachary simply refused to eat. Critical in killing yeast was the removal of pretty well all sugars from a child’s diet - that included natural and processed sugars, since sugars helped yeast grow.
As we soon discovered, however, dealing with the yeast was just the tip of the iceberg – although a very critical first step. For Zachary, we implemented a complete diet overhaul. If that was what it took to make Zachary well, then so be it!
So, from all this reading and all this research, where was I? I knew for a fact I had a least two enemies – casein and gluten, and possibly a third, phenol, just briefly mentioned in Karyn Seroussi’s, “Unraveling the Mysteries of Autism and Pervasive Developmental Disorder.”
As I read more about autism, I got more discouraged. I discovered gluten was sprayed on a ton of products to stop them from sticking (spices, salt and pepper, French fries, etc.). Within two or three weeks, I had basically figured out that the safest approach was to assume all processed foods were out, and to slowly look for those things Zachary could have. It became very clear to me, very quickly, that 99.9% of what was in a regular food store, Zachary could not eat. Companies that used “trace amounts” of a product, such as gluten, needed not indicate this on their packaging. So, to me, everything, every food was suspect unless I specifically ruled it in and let me assure you that the “ins” were few and far between. Dairy and gluten became my enemies and I was preparing to win the war.
As parents, Fred and I wanted to do everything we could for our son and do it as soon as possible. Therefore, we read constantly during the month of April…getting up at 6:00 a.m. or so and reading almost straight through until 2:00 or even 3:00 am the next morning. All we did for that one month was read…read…read.
In her book on autism, Karyn Seroussi explained how there appeared to be a link between autism and gluten and casein/dairy proteins…that it appeared children with autism usually had a yeast overgrowth in their intestinal wall that eventually allowed “holes” to be bored into the intestinal wall and thus in turn allowed proteins that were not properly broken down in the intestine to pass into the bloodstream. She explained how these proteins seemed to act like a hallucinogen on the brain of these children and that this most likely explained why these children always seemed in a “trance-like” state, in their own world...it was because the effect of these proteins gave them a “high” and thus, it was as if they were “tripping out on drugs”.
Of all the explanations for autism, that one was the one that seemed to make the most sense to us given what we were experiencing with Zachary. The more I researched autism and allergies, the more it all made sense to me. Zachary had so many signs I now knew to be signs of a food intolerance….the red ears and cheeks, the red circle around the anus (yeast infection), the constant earaches that resulted from stuffy sinuses caused by foods that produce a great deal of mucus … foods rich in gluten and casein. The pieces of the puzzle were slowly coming together.
It just seemed to make so much sense now - so much seemed to be “explained”. I now understood why Zachary woke up several times during the night and often could not be comforted in spite of hours of rocking. Not all “drug induced” trips were “good” and it was possible he was “seeing” things in his head that scared him. That certainly would explain why so many of these children did not like to be held. Zachary was probably afraid that what he was “seeing” in his head, those “things” were now trying to get a hold of him…even though I was the one physically holding Zachary, some “monster” in his head may have been what Zachary perceived as the “thing” trying to get a hold of him – his reality.
Having taken one class in neurology when I studied psychology as an undergrad, I knew that it was quite likely and credible that these proteins adversely stimulated certain parts of the brain. That could explain a whole slew of symptoms… the need for order in everything, the stacking of objects, the pouring in and out of sand in a sandbox, the “need” to eat sand if the body perceived a deficiency of some type, the hand flapping, the rocking back and forth, the desire to gnaw weird things like the window sills, leg or body shaking, the many over-sensitivities of the senses...so many things now made sense to me. If these proteins stimulated the brain adversely, depending on the area of the brain impacted, it was definitely conceivable that such a wide range of behaviors could be explained. I did not have to know all the mechanics of it for now, that could be left to researchers. As a parent, I saw how this could very well explain so many of Zachary’s behaviors and symptoms. This was one explanation that honestly made sense to Fred and me, and so, that was what we decided to use as the basic underlying assumption for starting to treat Zachary. Gluten, casein, and phenols, things I had not even heard of until just the past few weeks, those three things now became “the enemy” in our family. We resolved to put Zachary on a casein and gluten free diet right away and limit phenols as much as possible as well.
Casein was a milk protein, so, to us, that was the equivalent of “all dairy”. That was easy enough…avoid anything make with milk, milk solids, or those products that specifically said casein. Gluten was a protein found in grains. OK, that seemed simple enough. Little did I know just how difficult it would be to avoid gluten.
Grains containing gluten included wheat, barley, bulgar, kamut, oats, spelt, triticale. That did not seem so bad. Wheat, oats and barley were the only ones Zachary had eaten in the past. I figured I could probably adjust to a diet without those things fairly easily. In researching those things he could eat, I discovered quinoa, amaranth, buckwheat, rice, millet to be ok. Of those, rice and buckwheat were the only two I was familiar with and Zachary really did not eat much of either one. From now on, he would just have to, that was all there was to it.
I could not have been more mistaken as to how difficult a casein and gluten free diet would be...and one low in phenols too! The more I read, the more I learned just what we would be facing as a family. Gluten was the bigger of the two problems….it was on almost everything. Gluten was sprayed on spices to keep them from sticking, it was sprayed on frozen French fries for the same reason. Basically, for any food that went through some type of processing, unless I specifically knew a food was gluten free, I had to assume it contained gluten…down to the salt and pepper. So, trips to the restaurant or eating out of any kind were out. Trips, in general, just got a lot more difficult. All of Zachary’s food would have to be packed wherever we went. And worse, all those foods Zachary used to love, the macaroni and cheese, the bread, the crackers, the cookies, the cheese, the milk, the yogurt, the ice cream, the chocolate and countless others, now, were all out.
Once Fred and I resolved to do this, I started to search for a food store where I could find foods he could eat. Luckily, we lived in the suburbs of Chicago at the time and there were quite a few health food stores in the area. (A year later, we moved to the Upper Peninsula of Michigan and even there, we were able to maintain Zachary’s diet, so, being in a big city to get some of these products was not a must.). The thing that was nice about having a health food store right there was the ability to read the food labels for myself. That was both a blessing and a curse, if that word can be used. I found a health food store about half hour from where we lived. That store was big and the moment I entered, I thought, “great, I am sure I can find foods for Zachary here”. I started down the aisles. Having read a book by Lisa Lewis called Special Diets for Special Kids, I had some idea of the products I was looking for...but no idea as to what laid ahead.
As with most food stores, produce came first. Zachary did not like vegetables or fruits very much to start with and to make things worse, Karyn Seroussi’s book had made mention that phenols also seemed to affect autistic children. Phenols were very high in apples, bananas, tomatoes and red grapes. Those were pretty well the only “produce” Zachary did like...and now, they were out. Thank goodness, potatoes were ok. Try as I may to learn more about phenols and their effect on the body, I found no books on the subject in the U.S. or Canada. After several hours of research on the Internet, I did find one book on phenols and its possible links to autism, ADD, Alzheimers, and a whole slew of other things….but, it was only available in Australia. The book was by Mary Duncan and was entitled “Boron, Phenols and Health: Clues to the Mysteries of ADD, Alzheimer’s, Asthma” (ISBN 0-646-26612-8 – not available in the US or Canada). I sent away for it and allowed six weeks for delivery. To obtain a copy of this book, I sent $18.00 US to: Alkimos Australia, 26 Trian Road, Carabooda, Western Australia, Australia 6033. The book finally arrived. I had been so eager to read it and although I was able to get some “bits and pieces” from this book, I found you needed to have a good background in chemistry to thoroughly understand it and that was something I did not have...yet, research did seem to show a link between phenols, boron and ADD/autism. I would later notice that many foods high in boron were also high in phenols. Interesting to say the least!
I had already decided that those foods high in phenols (bananas, apples, tomatoes, red raisins/grapes), as outlined in Karyn Seroussi’s book, would also be excluded from Zachary’s diet. That did not leave me with much. I picked up a bag of red potatoes and went to the next aisle. That was where the real work began. As I picked up product after product, and read label after label, I very quickly, and sadly, realized just how difficult this was going to be. It seemed everything had either wheat or casein in it in one form or another...even in this store. I spent over four hours in the store and was still only two-thirds done. A young man who stocked the shelves must have seen me there as he went about the store during his shift. He came up to me after the four hours and asked if I needed help finding something. I must have looked either very discouraged or very tired because he had this look on him where you could tell he felt sorry for me… that he knew I or someone in my family must be on a very strict diet by the way I read each and every label. When I first heard his voice saying “Can I help you find something miss” over my left shoulder, I thought, “Great, someone who can help me find some of these items on this list I have”.
I had wanted to read all the labels for myself as much as possible to better get familiar with Zachary’s new foods, but by now, I was exhausted. Even though I had the names of some of these products, I had no clue as to what some of them looked like, so, an offer of help was most welcomed at this time.
As I turned around to say: “yes, can you ever help me”, my eyes fell upon a young man, approximately eighteen years old. His hair was dyed a very bright blond (almost yellow) and it had large green stars dyed in it as well…and it was very “spiky”. As my eyes got over the initial shock of the hair, they moved to the neck area. A chain with a padlock just below the Adam’s apple adorned his neck. Had I not been so tired, I probably would have laughed a little because this was so unexpected…I was a very conservative person. I was too exhausted even to laugh though, and the circumstances that had brought me to that store in the first place still weighed too heavily upon my heart. The fact was that this young man had offered to help me, and at this point, I really did not care what he looked like. As I showed him my list of items and explained that Zachary had autism and needed to be on a gluten free and casein free diet, he sympathetically looked at me and said: “Oh, I can show you a bunch of products he can have. I am vegan and I use these all the time”. “Vegan”?, I said, “what’s that?” (yet another new word in the food industry.... where had I been?). “Well, it was kind of like a vegetarian, only stricter…I do not eat anything that comes from an animal”, he replied.
Too tired, I did not even bother to comment, but I thought to myself that this was a young man who could eat anything but yet chose to impose upon himself a difficult, very restrictive diet. I did not say anything. My focus had to be Zachary and I was too tired to get into any philosophical discussions at that time. As he said, “Follow me”, I turned and noticed the multiple silver earrings in his ears and the one on his tongue. I was raised in a very conservative family, and, it was not my place to judge him...but this was all kind of “new to me”. He really was a very nice young man…and best of all, he was willing to help me. I turned to follow him. You could not help but notice the fact that his pants were about two thirds of the way down his butt, and he had boxer shorts with stars on them, to match the hair, I presumed. I guess that was about the “last surprise” for me because I could no longer hold back the little giggle that, by now, managed to surpass even my state of exhaustion. Just how was I supposed to follow this guy without noticing that! As I followed him down the aisles, I felt a little ill at ease, but the feeling of uneasiness quickly passed when I reminded myself that this young man chose to come to work like this...pants barely hanging on and all. So, my thoughts once again came back to Zachary and the reason I had come to this store in the first place.
For the next half hour or so, he spent his time helping me find products for Zachary’s new diet. I kept asking if he would get in trouble by spending so much time with one customer, but he insisted he would not. I finally got out of the store (it closed at 11:00 p.m.) and made it back home. It was about 11:30 at night and by then, I was so exhausted I could barely talk. That one trip to the grocery store for Zachary, start to finish, had taken over five hours... and I hated to shop in the first place! The next morning I told Fred about my experience at the store and about the young man who had helped me.
As I described the young man, Fred kind of snickered a little. I told him surely the teenager must have felt a certain “bonding” with me since my hair had been cut very short, was rather “un-kept” that day, and my style probably could have matched his closely…only without the spiking, the dye and the big green stars. My hair used to be quite long and Zachary used to love to “twirl” it as he went to sleep, almost to the point of driving me crazy. After finding out that he was ill, I cut my hair very, very short. I no longer had the time to care for it anymore. Anything that took away from my focus on Zachary had to be minimized. Based on my first trip to the grocery store for Zachary and everything I had learned in just that one event, it truly sank in just how difficult this casein free and gluten free diet was going to be. I did not loose faith, however. I returned to that store almost every week, each time learning a little more as to what Zachary could or could not eat and each time noticing that the kids who worked there were mostly like the first young man I had met. Many of them had chains and padlocks around their necks, earrings and dyed hair…and, they were all so nice and willing to help.
I was starting from next to nothing. As I read more on the Internet, I became more encouraged as I found more and more sites dealing with gluten free and casein free diets. I thanked the Lord each day that I lived in the computer age and that the Internet had such a wealth of information at my fingertips. I did not think I could have handled researching all this in a library. That would have been just too hard! So, that was one blessing. And, along with the Internet, we also had this great company called United Parcel Service (UPS) that delivered pretty well everywhere in the U.S. These two things would help me tremendously in my battle against autism.
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