Chapter 15
Following a Different Path:
A Child’s Documented Recovery from Autism
By Karyn Seroussi


I wish that there was more public awareness about the early symptoms of autism.  Too many of my sentences seem to begin with the words, "when I look back," or, "in retrospect...".  I know this is all too common among parents of children with autism.

Even if I did know what I was seeing, even if a scarlet "A" had appeared on Miles' forehead, I still wouldn't have gotten any useful advice from my pediatrician.  This is a disorder in transition, its etiology only beginning to be understood.  No one walked up to me and announced that Miles' early developmental differences were treatable with changes in his diet.  His diet, for heaven's sake!  Who would have believed something like that?

When our son Miles was born, in December of 1993, he was a cranky baby.  Not colicky, just crabby and unpredictable.  He never settled into a routine, he spit up so much that I had to change my shirt after nursing him, and he didn't like to be held when he was tired; he preferred to cry himself to sleep.  We never knew when he'd wake up again though; he could sleep for half an hour, two hours, four hours, or longer, if we were really lucky.  This went on for months. 

I endured the nursing for 12 weeks and then switched Miles to soy formula.  My pediatrician seemed surprised that I chose soy.  When I told her that there were a lot of allergies in my family she gave me one of those looks that clearly said, "If you say so."  I remember feeling slightly embarrassed, but I knew that milk was a common allergen, so why take chances? 

Miles did better on the soy formula, although his nights were still terrible.  He was one of those children with autism whose social and language development was normal for the first year or so before they regressed, and we had no way of knowing that we would ever be facing a problem greater that our own sleep deprivation.

At eleven months old, our little boy was getting ready to walk.  He said "cat" and "fish," and liked to play peek-a-boo.  He smiled at us when we played with him, waved "bye-bye" and clapped hands.

When he was almost twelve months old, at his doctor's suggestion, we switched him to cows' milk and it seemed that nothing changed.  Then the ear infections began, one after another.  The first one was accompanied by a rash on the scalp, face, and neck.  I went back to the doctor.  Something viral?  A case of Roseola?  She gave him antibiotics and told me to stop using fabric softener.  My faith in her began to ebb.  The rash had coincided with the fever.  It didn't occur to me at the time that the problem might be related to cow's milk, but I knew it wasn't a matter of laundry.  The flushed cheeks persisted, on and off, for months, while Miles was put on a prophylactic dose of amoxicillin for his recurring ear infections.

A parent knows when something is wrong, even when it can't be put into words.  When a child learns language, his gains should be progressive.  On the day that Miles had tubes inserted in his ears, at fifteen months old, he used the word "fish" for the last time at the aquarium in the doctor's waiting room.  A month later, he no longer clapped hands or waved "bye-bye."  Contrary to the otolaryngologist's assurance that Miles' language would now "explode," more than ever he appeared to be deaf. 

One day, exhausted and late for work, I began to weep in the regular pediatrician's office.  I told her that I didn't think she was taking my concerns seriously.  I needed to know what caused this constant illness that was making our lives were so difficult.  She told me, sarcastically, that "parenting can sometimes interfere with our work schedules."  I then did the smartest thing I ever did as a parent.  I scooped up my son and found a new doctor.

The new pediatrician didn't know much about developmental delays, but she agreed to help us find out what was going on.  With the exception of something she called "chronic non-specific diarrhea," Miles was physically normal, but he was an odd kid.  He had a very long attention span for certain activities, and resisted interaction.  Ignorant of the symptoms of autism, I described him as "in his own world."  I again expressed my concern that he didn't have any expressive or even receptive language.  I had noticed that he didn't recognize the word "cup," which was his favorite thing in the world.  In fact, he drank so much milk that for financial reasons we had to restrict him to about 70 oz. of milk per day ‑ over half a gallon!  The doctor was concerned that Miles had lost the few words he had learned.  She gave us a referral to a speech pathologist and a child psychologist. 

On July 12, 1995, I found myself in the emergency‑room at midnight.  Miles had a high fever and febrile seizures, only eighteen hours after his DPT inoculation.  Were the two related?  The doctors didn't know.  As he lay limply in my arms, exhausted from two hours of screaming, Miles gazed into my eyes for a long, long time.  I marveled at his gaze - he seemed to be recognizing me for the first time.  How could that be?  I realized how odd it was that I found his scrutiny to be unusual.  When had he stopped making eye contact?

At nineteen months old, he was seen by a developmental pediatrician.  There was a word for what Miles had: autism.  We began to see the horrible truth of the diagnosis.  Miles would sit in the sandbox for forty-five minutes pouring the same cup of sand, or putting together and taking apart the same two pieces of a toy.  He never pointed to objects or brought us toys to look at. 

Our lives began to seem as though they were spinning out of control. When my husband and I realized the implications of this diagnosis we could barely function. 

Then I read somewhere that a child was misdiagnosed with autism because of a milk allergy.  His mother, Mary Callahan, had written a book, describing this as a "cerebral allergy".  I was skeptical, but I went to the library for a book about allergy and it mentioned the possible link between ear infections and milk.  It also mentioned that children sometimes crave milk if they have an allergy to it.  Then my mother-in-law reminded us that my husband had begun to talk at three after she took him off milk products.

One morning I put down my library book, Doris Rapp's "Is This Your Child," and called Alan, my husband, at work.

"Honey, do we still have any soy formula, or did we give the last few cans away?"

We removed dairy from Miles' diet when he was 20 months old. 

Surprisingly, he accepted the soy formula and the rice milk I found at the supermarket.  We didn't know what would happen but there was no mistaking his reaction to this change.  On the first night, tired whining replaced the familiar sound of screaming.  The next day, for the first time ever, we awoke to the sound of Miles playing in his room.  His crying was greatly reduced that day, and he made more eye contact than he had made in a month.  The unfamiliar sound of babbling made us realize how little vocalizing Miles had done. Our babysitter was not immediately told about the reason for the change and she remarked emphatically about the differences in him.

When Alan came home from work on the third day and watched Miles reluctantly participate in a game of "Ring Around The Rosy," he made a pronouncement: Miles was to have no more dairy.  No milk, no butter, no casein, no whey, no way.

The developmental pediatrician listened patiently while we raved about his improvement in the two weeks since he had stopped having milk.  She agreed that he did seem to be doing well in some areas and suggested that we find an aggressive treatment program for him.  However, her diagnosis was still autism.  We later discovered that she had heard about this connection before, from "crackpot" parents and researchers, but said nothing to us at the time.  She seemed to be taking us seriously, however, since my husband was a research scientist with a Ph.D. in chemistry.  She simply agreed that if the diet seemed to be helping, it couldn't hurt to continue.

At 21 months, I noticed that when Miles had a cup of soy formula before his nap he woke up cranky and had small tremors for a few seconds.  I restricted him to rice milk.  We saw a neurologist at this time who listened attentively to my opinions and asked if I could give Miles some milk and soy, and then try to document any behavioral changes on videotape.  Based on his observations he seemed amazed that Miles had been diagnosed with autism, and was skeptical about the original diagnosis.  I could see why, since Miles had improved so much, especially in the area of social interaction.  I could not bring myself to do what he had asked and give milk to Miles, however.  We knew what we were seeing, and his progress was too important to us.

We had implemented a home‑based behavioral program to which Miles was responding well, and he began attending a special nursery school four mornings per week.  We agreed that these were a factor in his recovery but we knew they would not have been effective while Miles was drinking milk.  In one month, Miles had gained over six months in his fine motor skill evaluation, and lost several points on our (his parents') application of the CARS test, indicating a reduction in autistic behaviors.   He was rapidly gaining spontaneous appropriate language and social skills, his eye contact was now almost completely normal, he pointed to everything to learn its name, he brought us objects just to share them with us, and he watched his sister carefully for new cues about behavior. 

We looked for a sympathetic allergist.  Some other parents of children with autism recommended one who agreed that some foods can affect certain children even when they do not show a classic allergic immune system response.  He was somewhat helpful.  Miles had a reaction to some molds, but only a very minimal reaction to foods, among them egg, corn, wheat, soy, oats, and fish. There was no reaction to milk or rice.  I was surprised - why would Miles have such a problem with milk if he did not have an allergy to it?

The doctor explained that he believed there were two types of allergy.  In the primary type, symptoms such as hives, swelling, or difficulty breathing were common reactions.  I remembered that my nephew had such a problem with peanuts - my sister had to keep an epi-pen(a source of the drug epinephrine to inject in the case of a severe allergic reaction) with him at all times. In the secondary type of allergy, a different part of the immune system seemed to be affected, and the response to such allergens could be headache, diarrhea, disorientation, irritability, or even depression or hyperactivity.  He suggested a rotation diet.

A rotation diet is based on the principle that one can eat allergenic foods every four days or so with a lesser reaction then if one ate them every day.  In addition, after three days without the food, one was more aware of allergic reactions when it was introduced.

I sat down at my computer and wrote up a weekly schedule of foods that Miles could eat - from a list that already seemed to be rather short.

During the rotation diet, we noticed that Miles definitely no longer tolerated soy. Chinese food gave him hives (soy sauce) and soy formula gave him a severe diaper rash.  We also found that corn in any form made his diarrhea worse.  We already knew that citrus, grapes, and most fruits gave him a rash, (which was true of our daughter at that age), so we were running out of food choices.  To top it off, Miles was very picky about food tastes and textures. 

Still, our biggest question was still unanswered: why was Miles getting better from autism after the removal of dairy from his diet?

In November we had a behavioral consultant from California take a look at Miles.  He agreed that he had a lot of autistic characteristics and some autistic-like delays, but admitted to being baffled by his social behavior.  When we explained about the dairy he said he was mystified, and suggested that we look into galactosemia and other metabolic disorders. 

I bought a modem and got on the Internet, hoping to find more information.  Within 48 hours I was bombarded with the news about casein/gluten intolerance and autism.  I was overwhelmed.

To be taken seriously and to discover that Miles shared his case history with others was breathtaking.  Parents like Lisa Lewis and researchers like Paul Shattock made it easier for me to understand that the problem might be caused by the improper breakdown of milk and wheat proteins into opiate-like neurotoxins.  Paul suggested removing gluten from Miles' diet.  Gluten is a protein found in wheat, oats, rye and barley.  It was abundant in all of Miles' favorite foods, and I was horrified to discover that wheat is added to most packaged products as a filler, or to keep foods from sticking together.  The prospect of starting a gluten-free diet seemed daunting, but it would be worth it if only to stop the diarrhea.  I joked, via e-mail, that if Miles had a formed stool I would buy Paul a bottle of champagne.

We took Miles off gluten in November, when he was twenty-three months old, or so we thought.  After a few days I realized that the Rice Krispies I had been giving him contained barley malt - a no-no.  Then, within twenty-four hours of removing that food, we were amazed to see his bowel movements normalize.

Miles' gastroenterologist was mystified.  He had been given the gluten/gliadin antibody tests and did not prove positive for celiac disease, and yet she saw him improve after the removal of gluten.  She had even seen his diapers beforehand - an odious mass of sickly-smelling slush.  I later found out that many children with autism seemed to have a form of celiac disease without testing positive to the gluten antibody test.  When they were further tested with a small-bowel biopsy, they were usually diagnosed with celiac disease based on their flattened intestinal villi and gut permeability.

Shortly thereafter, without really understanding why, we started giving Miles low doses of nystatin.  One of the parents we knew told us that it had helped her son, but was unsure about the reason.  After ascertaining that the drug seemed safe, we asked our doctor for a prescription.  During this time, his "postural insecurity" greatly improved.  Later, after hearing Dr. Shaw speak at a conference and understanding about the Candida theory, I wondered about that.  Was the lack of balance caused by the gluten or the yeast?  I couldn't say, but Miles soon began to climb stairs on two feet and to try using a seesaw.  He lost the drunken gait that had characterized his movement for so long.  He remained on nystatin for over two years, and continued to take probiotics such as acidophilus and bifidus.

After a few weeks, we tried a "multiple food elimination diet."  This meant that we cut Miles' diet down to the very few foods that seemed the least likely culprits: kosher chicken, potatoes fried in canola or safflower oil, white rice, and tapioca, and then added new things back, one at a time. 

We soon discovered that other foods also gave him loose stools, such as eggs and pear juice.  By the time we had tested every food at least twice for physical or behavioral reactions, Miles was reduced to the following diet: rice, potatoes, chicken, pork, sesame seeds, macadamia nuts, teff, arrowroot, and tapioca.  Within a few months of his being on the diet we discovered that the removal of the other foods had made him even more sensitive to them.  Corn was bad and soy was worse, but even the smallest trace of gluten would result in several days of marked regression and diarrhea.

At that point we became very careful, almost fanatical about Miles' diet.  If we accidentally dipped a spoon from the pot of wheat pasta into the pot of rice pasta, we threw away the entire batch and started again.  Everyone in the household, including our three-year-old daughter, learned to wash their hands after touching bread.  Miles had a separate toaster, a separate shelf in the pantry, and sat at the end of the table where crumbs were less likely to fly from our hands.

Our friends and family might have thought us crazy, but we believed that the fact that we were doing the diet 100% was important to his success.  We knew other children who responded to the diet whose parents weren't as careful, and their progress was often uneven.  Miles' growth continued to soar. 

Although we couldn't swear by it, three daily tablets of DMG seemed to improve his language function; he seemed somehow "clearer."  At twenty-eight months, he began using three-word combinations.  By two and a half, he had a mildly rote manner of speaking, but his sentences were longer and more meaningful, such as "look Mommy, I see a slide."  His voice had a sing-song quality to it too, still residual from the autism, but he was highly motivated to communicate.

Miles had finally discovered his sister, only eighteen months older and eager for a playmate.  They began to play games of imagination, such as "zoo," "dolls," and "dinosaurs."  His imaginary play began as a replay of the same scene, usually involving a carnivorous dinosaur attacking everyone else.  As the months went by, however, he took great pleasure in longer and more complex storylines which were always changing.  There arrived a day when his sister began to let him take the lead in the play because his ideas were so exciting and different.

By the time Miles was three, his evaluation revealed that he no longer qualified for special education services.  In fact, his language tested at a level over eight months above age level.  Socially and developmentally, the teachers in his "integrated" classroom found him to be one of the most advanced in the class. 

If his special-education teachers were skeptical about my use of the diet at the beginning of the year, they certainly were not by graduation.  They had all seen the dramatic changes in Miles, as well as having seen the frightening deterioration that followed the rare occasions when they slipped up and let him get hold of a stray pretzel or cookie.  One of them told me that she had never seen a child recover from autism before, and that she would always tell other parents of children with autism to try the intervention.

Another of his teachers told me that after twenty years of working with autistic students, she didn't want to work with any children whose parents refused to at least try the diet.  On the days when Miles ate a problem food such as corn, she could always tell without being told, and would pronounce her session with Miles "an utter waste of time."  Two of her students, Miles and a younger boy named Bobby who was following a similar path, had opened her eyes to a whole new avenue for recuperation.

The regular nursery school class that he attended twice a week was a good indication of Miles' functioning; he was very well-liked by the other children, who liked to do "whatever Miles was doing." These were “typical” children, and I was pleased to see how well he fit in on the days when it was my turn to assist in the classroom.  His teacher assured me that he adapted very well to the rules and routine of the classroom, and was surprised by my anxious questions when I came to pick him up, such as "how did things go today?"

Because of the toileting delays typically associated with autism, potty training had seemed like such a long shot that we didn't push it.  We were shocked to hear the toilet flush one day and see Miles walk out of the bathroom with a dry diaper in his hand.  A few days later, after dragging me excitedly to the bathroom, Miles pointed out his first bowel movement.  Afterwards, as we walked into the living room, Miles took my hand and said, "Mommy, I'm so proud of myself!"

At three and a half, Miles was so different from the child he had been that the past year seemed like a displaced memory, or a fragment of a movie about someone else's life.  He was a charming, loving, intense child with an impish grin and a great imagination.  He adored his family, readily made new friends, loved to swim and draw pictures, and insisted on picking out his clothes and dressing himself.  He expressed himself well and even had a rather sophisticated sense of humor.

Our only reminder of what seemed like an impossible past was Miles' limited diet.  He did not have potty accidents so we got a little bit adventurous with new foods, but Miles still had problems with the same list that he had reacted to as a baby.  Stomach aches and diarrhea were the usual result, with occasional headaches or trouble sleeping.  Although several people suggested EPD (Enzyme Potentiated Desensitization) injections to widen his diet, we decided to wait until Miles was older.

Miles is in a regular school now, with no problems whatsoever.  He knows what he can eat, and is very cautious about touching other people's food.  If I give him something unfamiliar, he asks, "Is this okay for me?"  Miles is a good sport about it - he says "yay, French fries!" like a child who is not seeing them for the fourth time that week.  We are resigned to the fact that he may never be able to eat casein or gluten, and that his diet may always be as limited as it is today.  However, he gets enough protein and carbohydrate, he is supplemented with vitamins, minerals, calcium, essential fatty acids and amino acids, and the level of his functioning is so good that this seems a small price to pay. 

I am one of the lucky parents, I know that.  When I start my sentences with "when I look back," I can finish them with thoughts like, "it was a good thing we got such an early diagnosis," or "thank goodness for the Internet."  Early intervention was the key for our little boy.  Not just treatment of his symptoms, but the treatment of his immune system and the cause of his problems.  Miles was young, and his nervous system had not sustained enough permanent damage to impair him for life.

Do I think that every child will respond as well as he did to the diet?  Of course not.  I have only seen three others in the past two years, all of them under three years old.  But hey, that's four children in my city who do not have autism and that ain't bad.  In addition, I have seen dozens of older children whose functioning improved well beyond their parents' expectations with the implementation of this diet, and that seems to me to be as good as a million dollars worth of special education.

My advice to parents is to look to the cause first, and treat the symptoms later.  Find out as soon as possible if you can strengthen your child's immune system and improve his functioning.  A gluten and casein-free diet, vitamin B6, MCT oil, DMG, and essential fatty acids are several safe things to try.  Definitely test and treat for yeast and anaerobic bacteria, since it is so prevalent in children with autism and may be causative to the other problems.  It doesn't matter how old they are - Donna Williams didn't discover dietary intervention for her own autism until she was in her twenties, and it greatly reduced her anxiety and improved her ability to function and interact with others.

It used to break my heart when I saw a young child with autism, perhaps one that craved milk the way Miles did, and his parents told me that they did not want to try a dietary intervention. I would knock myself out pestering them and explaining it to them, but finally learned that people won't try new things unless they're ready.  Unfortunately, a developing brain is not always that forgiving - certain behaviors are meant to be learned during certain stages of development.

For the sake of a child with autism who had terrible diarrhea, I once even found myself begging his mother to take gluten from his diet. I actually used the words, "please, I am begging you."  It was very uncomfortable, and I felt embarrassed when she said no.  Two years later I found out through a mutual acquaintance that he had been diagnosed as "failure to thrive," and she finally tried the diet with great success.  I tried to imagine how awful she must have felt.  It's one thing not to have the information, but another thing entirely to have it and not try it out because of intimidation or fear of the unknown.

Perhaps some of my frustration comes from my own fear of what might have happened if we had not pursued the course we did.  I suspect that with my own arrogance and skepticism, if my doctor hadn't told me to, or if I hadn't discovered this for myself, I might not have tried the diet based on hearsay. 

Another thing I've learned is that there is still a lot to know about the biological processes that lead to the symptoms of autism.  I have spent a long time formulating theories which make a lot of sense to me until the next conference I attend, the next parent I speak with, or the next research paper I read.  I suspect that Miles’ vaccinations either introduced a virus that started the problem, or else aggravated his already unstable immune system.  I strongly believe that the liberal amount of antibiotics he was given either triggered or contributed to the outcome.  All I can say for certain is that a breakdown in the immune system certainly does seem to be involved, as well as the abnormal production of substances which are clearly not present in the urine of normal test subjects, and which can disappear after implementation of a gluten and casein-free diet.

Therefore, tempting though it is to assure parents of newly diagnosed children with autism that I have all of the answers, I usually just share Miles' story, or give them a copy of a paper I wrote, entitled "Frequently Asked Questions About Dietary Intervention For Autism and Other Developmental Disabilities" and lend them one piece of advice before stepping back: try whatever you have to try so that you won't spend the rest of your life wishing you had started sooner.


 Frequently Asked Questions about Dietary Intervention for the
 Treatment of Autism and Other Developmental Disabilities

Disclaimer: The following is not medical advice.  All changes to your child's diet should be supervised by a physician or a qualified nutritionist.

Q:  I don't think my child has allergies, or that allergies could cause autism. Why should I try removing foods from his diet?
A:  Although parents have been reporting a connection between autism and diet for decades, there is now a growing body of research that shows that certain foods seem to be affecting the developing brains of some children and causing autistic behaviors.  This is not because of allergies, but because many of these children are unable to properly break down certain proteins.

Q:  What happens when they get these proteins?
A:  Researchers in England, Norway, and at the University of Florida have found peptides (breakdown products of proteins) with opiate activity in the urine of a high percentage of children with autism.  Opiates are drugs, like morphine, which affect brain function.

Q:  Which proteins are causing this problem?
A:  The two main offenders seem to be gluten (the protein in wheat, oats, rye and barley) and casein
(milk protein.)

Q:  But milk and wheat are the only two foods my child will eat.  His diet is completely comprised of milk, cheese, cereal, pasta, and bread.  If I take these away, I'm afraid he'll starve.
A:  There may be a good reason your child "self-limits" to these foods.  Opiates, like opium, are highly addictive.  If this "opiate excess" explanation applies to your child, then he is actually addicted to those foods containing the offending proteins. Although it seems as if your child will starve if you take those foods away, many parents report that after an initial "withdrawal" reaction, their children become more willing to eat other foods.  After a few weeks, many children surprise their parents by further broadening their diets.

Q:  But if I take away milk, what will my child do for calcium?
A:  Children between the ages of one and ten require 800-1000 mg of calcium/day. If the child drinks three 8-oz glasses of fortified rice, almond or potato milk per day, he would meet that requirement.  If he drank one cup per day, the remaining 500 mg of additional calcium could be supplied with one of the many supplements available.

Twin Labs makes a chewable calcium citrate wafer that contains no allergenic fillers and tastes like a "SweetTart" candy.  Custom-made calcium liquids can be mixed up by compounding pharmacies (such as Pathway - 1-800-869-9160) using a maple, sucrose syrup, stevia or water base.

Editorial Note: High quality calcium supplements are also available in capsule, liquid, or chewable forms through New Beginnings Nutritionals (www.nbnus.com, 877-575-2467).

There are some very good calcium-enriched milk substitutes on the market.  Rice Dream, in the white box, is usually available at the supermarket. Because this brand of rice milk is processed with barley enzymes, there is some concern over whether it will cause a reaction in individuals highly sensitive to gluten. If your child is also on a gluten-free diet, look for other brands of rice milk at your health food store. Darifree, a pleasant-tasting potato-based milk substitute, is available by mail-order (1-800-497-4834.)

Q:  Is this diet expensive?
A:  There is no denying that many of the gluten-free ingredients you will need to keep on hand are more costly than the staples you are used to buying. However, when you order by the case, the above milk substitutes cost about the same as cow's milk. Some parents report that their children with autism were drinking over a gallon of cow's milk per day (about $60/month!) but these same parents were reluctant to switch to rice milk at $1.30/quart.

As with all foods, convenience products such as frozen rice waffles are expensive, but making these from scratch is easy and inexpensive. Bulk rice flour is about 45c/pound, and there are several good gluten-free cookbooks. You'll find yourself making rice and potatoes more often, instead of ordering out. You might even save money.

Q:  Isn't milk necessary for children's health?
A:  Americans have been raised to believe that this is true, largely due to the efforts of the American Dairy Association, and many parents seem to believe that it is their duty to feed their children as much cow's milk as possible.

However, lots of perfectly healthy children do very well without it. Cow's milk has been called "the world's most overrated nutrient" and "fit only for baby cows." There is even evidence that the cow hormone present in dairy actually blocks the absorption of calcium in humans.

Be careful. Removing dairy means ALL milk, butter, cheese, cream cheese, sour cream, etc.  It also includes product ingredients such as "casein" and "whey," or even words containing the word "casein."  Read labels - items like bread and tuna fish often contain milk products.  Even soy cheese usually contains caseinate.

For more information on dairy-free living, there's a very good book called "Raising Your Child Without Milk" by Jane Zukin. This can be ordered at Barnes & Noble and at Waldenbooks.  There is also a very good little book called "Don't Drink Your Milk" by Frank Oski (the head of Pediatrics at Johns Hopkins and author of "Essential Pediatrics.") This book cites the results of several research studies which conclude that milk is an inappropriate food for human children. It is available for $4.95 from Park City Press, PO Box 25, Glenwood Landing, NY 11547, ISBN # 0671228048.

Q:  I might be willing to try removing dairy products from his diet, but I don't think I could handle removing gluten. It seems like a lot of work, and I'm so busy already.  Is this really necessary?
A:  What you need to understand is that for certain children, these foods are toxic to their brains.  For some, removing gluten may be far more important than removing dairy products.  You would never knowingly feed your child poison, but if he fits into this category that is exactly what you could be doing.  It is possible that for this subgroup of people with autism, eating these foods is actually damaging the developing brain.

Q:  Removing both foods at once seems overwhelming, and I'm afraid of my child's reaction.  Can I start slowly?
A:  Many parents strongly suggest that you try removing dairy first, and then work on planning for a completely gluten-free diet. Gluten can take more effort and some education on your part, and preparation may take a bit longer.  Some physicians recommend doing this diet one step at a time to accurately record the child's response, and to reduce withdrawal reactions. The experts seem to agree that the milk and wheat proteins are so similar to each other that if one is a problem, the other should be removed as soon as possible.

Q:  How do I know if this applies to my child?
A:  Although there is some peptide testing available, the waiting time for results can be long, and widespread use of a reliable test is not yet available.  The researchers agree that this is a very common problem in the autistic population, so a trial period on the diet may be your child's best bet.  Although a lab result is more convincing to a doctor, the noticeable improvement many children exhibit will usually persuade even a reluctant spouse to support the diet.

Many affected children who eat a great deal of dairy and/or wheat-based foods will show changes within a few days of their elimination. The diet must be strict.

Many parents have found that their child did not improve until they discovered and removed a hidden source of gluten or dairy.  Noticeable changes in eye contact, sociability, and language are one sign that diet is an important issue.  Another thing to look for are changes in the child's bowel movements or sleep patterns.

Q:  When my child was taken just off dairy he improved greatly, but then he started eating a lot of wheat, perhaps to make up the opiates he was missing.  Will I see the same kind of noticeable improvement when I remove gluten?
A:  Children who eat a lot of gluten should show an improvement when it is removed.  Some parents say that their child's response was more obvious with dairy, and some with gluten.  Unfortunately, gluten seems to take longer to disappear from the system than casein does. Urine tests show that casein probably leaves the system in about three days, but it can take up to eight months on a gluten-free diet for all peptide levels to drop. If this intervention is followed by a deterioration or regression (a withdrawal-type response,) stay the course! It almost certainly means that your child will benefit. This may seem like a lot of work for an uncertain payoff, but in the lifetime of your child it may be the most important step you take.

Q:  The only non-dairy, non-wheat foods my child will eat are French fries and chicken nuggets. Are these okay?
A:  Chicken nuggets are coated with wheat. Some French fries are dusted with wheat flour to keep them from sticking together. It is a very good idea to get used to checking with your supplier or the manufacturer. Keeping a stack of blank, pre-stamped postcards in the kitchen is a handy way to check.
The biggest problem with French fries eaten out of the house is contamination of the frying oil with gluten from onion rings and other breaded products.  Making fries homemade is a good option.  If your child refuses them at first, it may be because of what they're missing!  Some parents report that their kids have an uncanny ability to detect gluten in foods.  Since many of the children enjoy salt, salting the fries might make them more acceptable.

Q:  What else contains gluten?
A:  Wheat, oats, rye, barley, kamut, spelt, semolina, malt, food starch, grain alcohol, and most packaged foods - even those that do not label as such.  There is a lot of information on gluten intolerance because of a related disorder called Celiac Disease.

Q:  After I removed gluten and casein, I discovered that other foods seemed to be causing a problem, like apples, soy, corn, tomatoes, and bananas. I see irritability, red cheeks and ears, and sometimes diarrhea or a diaper rash. I thought you said that these kids don't have allergies!
A:  Many do have allergies, or allergy-related symptoms such as hay fever, asthma or eczema. Sometimes they have problems with foods which are not "classical" allergies, and which won't show up on skin tests. In this case, a different part of the immune system seems to be involved.

Q:  So if these foods are not contributing to his autism, they're okay?
A:  Not really. Current research indicates that in a great many cases, autism seems to be an immune system dysfunction. This not only leads to a problem breaking down casein & gluten, but it may also result in a problem breaking down foods which contain phenols (phenol sulfur transferase deficiency,) and an over-reactive response to other allergens.

Often, once gluten is removed, this effect becomes more noticeable, perhaps because the allergens were "masked" by the effect of the gluten.  It is also possible that a "leaky gut syndrome," caused by the gluten intolerance, is now permitting other foods to pass through the intestinal screen and into the bloodstream.

For children who respond to this diet, allergens do seem to place further stress on the immune system, and have often been shown to worsen behavior and development.

Q:  But my child's immune system seems to be working unusually well - he is rarely sick.
A:  What we're describing is not an immune deficiency, but rather an immune dysfunction.  Many (although not all) seem to share a history of ear infections and spitting up as babies (possibly milk-related,) or of chronic diarrhea, constipation, or loose stools (possibly wheat-related.)

Other parents note that their children with autism seem to be the healthiest members of the family. In this case, it has been hypothesized that the immune system is too aggressive and ends up turning on the nervous system. This may explain the presence of anti-myelin antibodies in some children, and may also explain why some have immune issues like multiple allergies but do not respond well to dietary intervention.

Q:  What causes this problem?  Autism seems to be so much more common than it used to be.
A:  Researchers are not sure, but it seems likely at this time that many cases are caused by a genetic predisposition or by environmental toxicity, combined with some kind of triggering event that stresses the immune system, such as a vaccination or virus. In several cases, prolonged use of antibiotics seems to have contributed to the onset of the disorder.

Q:  So, if I can't give him milk or wheat, and if he has some other food allergies, what do I feed my child?
A:  Most kids are okay with chicken, lamb, pork, fish, potato, rice, and egg whites. Parsnips, tapioca, arrowroot, honey, and maple syrup are usually okay too.  French fries from McDonalds are gluten free (but may contain soy or corn.)  Certain white nuts, like macadamia and hazelnuts, are also usually tolerated.  Others kids may be okay with white corn, bacon, fruits such as white grapes or pears, beans, sesame seeds, or grains such as amaranth and teff (available at natural foods stores.)  There's always something to feed them - even the most finicky kids seem to like sticky white Chinese rice or French fries.

Q:  How do I know which foods he's allergic to?
A:  Try an allergy elimination diet.  For example, keep tomato out of his diet for a few days and then re-introduce it.  If you see symptoms, either physical or behavioral, try again in a few days.  Try to be systematic, to be certain before ruling out a food.  Two excellent resources, which are probably available at your library, are Doris Rapp's book, "Is This Your Child," and William Crook's "Solving the Puzzle of Your Hard to Raise Child."

Q:  I'm already worried about my child's nutrition, and his "allergies" are causing me to further reduce his choices.  If apple juice and bananas are the only fruits he will eat and he's reacting to them, how is he supposed to get by?
A:  Fruit contains water, sugar, fiber, and vitamins.  He needs to get these things from other sources.

Q:  I thought the "five food groups" were so important!
A:  They are, to an individual without food intolerances.  But, just as a person who eats a balanced diet might not need to take vitamins, a person with poor nutrition can make up for a lot with a good vitamin and mineral supplement.

Q:  So I should be giving my child a vitamin supplement?
A:  Absolutely. Poly-vi-sol with Iron is probably okay, or order a gluten-free multi-vitamin & mineral formula from your natural foods store. Kal Dinosaur Chewables are tolerated by many food-sensitive children, and are available with or without minerals.

Because many children with autism have been reported to improve on a regimen of vitamin B6 and magnesium, you may want to order a supplement rich in these nutrients from a compounding pharmacy such as Pathway (1-800-869-9160.)  For a 40 pound child, Dr. Bernard Rimland of the Autism Research Institute recommends 300 mg of B6 and 100 mg of magnesium per day.  It is likely that in people with a leaky gut, absorption of B6 (which aids in nervous system function) is often greatly diminished.

Editorial Note: It is now understood that multivitamins supplements for children with autism should not contain iron or copper, unless these children have been tested to be low in these minerals. Since this chapter has been written, supplements are now easily available through companies such as New Beginnings Nutritionals (www.nbnus.com, 877-575-2467), which carries a wide range of vitamins, minerals and other nutritional supplements specifically formulated to meet the needs of children with autistic spectrum disorders.

Q:  What else does my child need?
A:  There are six basic things a person needs from food:  water, protein (and amino acids,) carbohydrates, fats, vitamins, minerals (including iron & calcium.)  In addition, food contains certain phytochemical substances which seem to help with functions like disease prevention.  It is helpful to consult a nutritionist about the use of supplements such as pycnogenol for any child on a limited diet.

Children who have gone for one year eating only chicken, canola oil, potato, rice, calcium-enriched beverages, and a liquid multivitamin supplement with minerals have had excellent results on nutritional blood tests.  You'd be surprised to learn just how unnecessarily varied an American diet is, compared with the diets of other cultures!

Q:  So how do I know if my child will respond to this diet?
A:  The biggest clue is when a child self-limits his diet - especially to milk and wheat. This is no longer seen as a "need for sameness" but as a biological addiction. Children who don't necessarily "self-limit" but who also respond are those who eat an unusually large or small amount of food. Although the former may not recognize the source of the opiates, he knows that eating makes him feel GOOD. The latter may realize that many foods make him feel ill, and tries to avoid eating whenever possible. These "failure to thrive" children with autism are very hard to put on this diet because of their parents' fears, but will usually respond when acceptable substitutes to the non-tolerated foods can be provided.

Other symptoms of food intolerance or vitamin deficiency are dermatitis or extremely dry skin, migraines, bouts of screaming, red cheeks, red ears, abnormal bowel movements, abnormal sleep patterns or seizures.

Q:  What's all this I hear about yeast?
A:  Candida is a yeast that lives in our bodies in small amounts. It was speculated that in individuals with improperly-functioning immune systems, it could flourish in the gut and lead to a host of problems, including fatigue, sugar cravings, headaches, and behavioral problems.

Q:  How do we know if this is really true?
A:  We didn't, until recently. Dr. William Shaw in Kansas found unusually high levels of "fungal metabolites" (yeast waste products) in the urine of several groups of abnormally functioning individuals (including people with autism.) His first paper describing this phenomenon was published in the Journal of Clinical Chemistry in 1995 (Vol. 41, No. 8.) He is currently conducting further studies on the effect of anti-fungal therapy on urinary organic acids from children with autism. His test is performed by the Great Plains Laboratory, at 913-341-8949.

Q:  So does yeast cause autism?
A:  This finding is likely to be just another consequence of the abnormally-functioning autistic immune system.  However, it has also been hypothesized that the Candida might aggravate a condition of gut permeability (the "leaky gut" syndrome) which might let the gluten and casein proteins into the bloodstream before they are broken down, so it may in part be responsible for autistic behaviors.  Many parents of children with ADD/ADHD as well as those with autism report that treatment for Candida does improve their children's behavior and concentration.

Q:  How do I treat for Candida?
A:  One approach is to ask your pediatrician for a course of nystatin, which is a non-systemic (not absorbed into the bloodstream) anti-fungal. Taken orally, it works locally in the gut to fight Candida. This medication is considered to be quite safe, even when taken for several months. For a 25-35 lb. child, ask the doctor for a prescription for nystatin powder (125,000 units per cc) in a stevia base, starting with 1 cc 4x/day. Your local pharmacy probably carries a commercial preparation in a sugar base - this feeds yeast! Again, try Pathway, at 1-800-869-9160.

"Probiotics" such as acidophilus, the natural bacteria found in yogurt, are other Candida-fighters, and are available at the natural foods store in powdered form in the refrigerated section. Some acidophilus preparations are milk-based - be sure to get one that is not! Bifidus works in the large intestine and can be of great benefit. "FOS" is desirable in these supplements, as it feeds the probiotics.

Q:  Aren't probiotics the "healthy flora" I've heard about?
A:  Yes, they compete with Candida for the sugars you eat. It's the "good bacteria." You may be aware that acidophilus is eradicated from your gut when you take antibiotics.

Q:  That's why you're supposed to eat yogurt when you are on antibiotics!
A:  Exactly. As a matter of fact, in the 1950's, when oral antibiotics were first prepared for general use, scientists knew about this Candida problem and coated the tablets with nystatin. After a few years, the FDA decided that the two drugs should be prescribed separately (which they never were) and made them stop.

Q:  My friend's child tried nystatin and it made him vomit.  If nystatin is so safe, why did he react to it?
A:  The child may have experienced a "die-off reaction" to the Candida. As it dies, Candida releases toxins into the bloodstream and can cause nausea, vomiting, or diarrhea. It is likely that Candida was indeed a problem for this child. Your friend should discuss a dosage change (starting with a low dose and working up to a "normal dose") with the prescribing doctor.

Q:  My doctor has never heard of any of this and she is extremely skeptical. I'm embarrassed to tell her I'm considering this approach.
A:  Skepticism is a good thing in a medical doctor or scientist.  However, since there is preliminary evidence to support this safe, non-invasive intervention, it is up to you to educate her, state your wishes, and ask for her support. For a doctor, it is better to wait until all of the data is published in peer-reviewed journals before advocating a treatment. For a parent, it is reasonable to want to help one's child without waiting for all of the results of the "double-blind placebo" studies. Because this approach does not include any unusual supplements, invasive drugs, or expensive treatments, your pediatrician should be supportive. Explain that you would like to try this for a few weeks, and agree that you will be objective about recording your child's progress while on the diet.

Q:  Where can I find support?
A:   It is likely that other parents in your area are already aware of this intervention. Forming a support group, or forming a local chapter of Parents of Allergic Children may be a good option.  There are also several support groups for the biological treatment of autism on the Internet (search "Autism and Diet,") as well as support for a gluten free diet (search "Celiac Disease.")

Good luck!

For more information about the implementation of a gluten-free diet, visit the ANDI website at http://members.aol.com/AutismNDI/PAGES/index.htm.

For a free copy of the ANDI Newsletter, send mailing address to: Autism Network for Dietary Intervention,
PO Box 17711, Rochester, NY  14617-0711, or by email to: AutismNDI@aol.com.

(An extremely popular new book by Karyn Seroussi, Unraveling the Mystery of Autism and Pervasive Developmental Disorder, A Mother’s Story of Research and Recovery is available fromThe Great Plains Laboratory and can be ordered by fax, mail, phone, or from our website www.greatplainslaboratory.com.)