***At the age of 2.5 my oldest son was given the formal diagnosis of Pervasive Developmental Disorder – Not Otherwise Specified or PDD-NOS. Truthfully this did not come as a surprise to my husband or me. For a very long time we had known that something was drastically wrong with Matthew. We had suspected Autism and we were the first to bring up the dreaded "A" word. And we were right. PDD-NOS is one of several diagnoses on the Autism Spectrum, which is also called the Pervasive Developmental Disorder Spectrum. Typically you will hear of a child that has either Autism or Aspergers, these two diagnosis have very specific criteria for which a child must meet to be labeled with either Classic Autism or Aspergers. Matthew had many of these traits but did not fit neatly into either category so he was placed in the catchall category – PDD-NOS. It didn’t make it any less scary and I often just refer to it as Autism because people are starting to know what Autism is, but most have no idea what PDD-NOS is.
When we started looking into the diagnosis of Autism and PDD-NOS, we were first struck by the bleak outlook our child was faced with. Autism was untreatable, incurable and often the children needed to be institutionalized if they could not learn to function on their own. Not what any parent wants to hear for their two year old child. We were heartbroken, but we were not defeated. I became a bit obsessed ( and many people will say I still am – myself included), I looked on every website I could find, I read every book that seemed to offer hope and we looked to each successive doctor praying this one would have the answer. And the same answer almost always came. Give him therapy, go home and love him. The therapy they were talking about was the typical American Academy of Pediatrics (AAP) approved Applied Behavioral Analysis (ABA) and Occupation Therapy (OT). ABA is the only AAP approved treatment for Autism. Some children have fully recovered with extensive and intensive ABA training. What this entails is usually about 40 hours a week of at-home ABA therapy for the child. Very intense, very expensive and in my opinion still one of the most useful tools for an Autistic child. BUT. There is always a but isn’t there? But, I wasn’t satisfied with the outlook and I knew there had to be more. And one day while looking on the internet I found a glimmer of hope.
Several parents were talking about a diet they use to treat their Autistic children. “Really”, I thought. “A diet. No way can a diet make an impact on a neurological disorder.” But I was so intrigued. Could there be some hope to help my baby? Could these parents be telling me the truth? But if they were right, why weren’t my child’s doctors telling us about this diet? It had to be a hoax. Didn’t it?
I brushed the idea aside and continued with Matthew’s OT, Physical Therapy and Speech Therapy and would reread the posts by these fringe parents in the evenings when my son was in bed.
Then one day it happened. My husband was out of town on a business trip and I was home with our two boys (I had recently given birth to our second son). Several of my friends who knew of Matthew’s diagnosis called and told me that Jenny McCarthy was going to be on the Oprah show that afternoon discussing her new book about her son who had Autism. I figured I would TIVO it for later. I always wanted to know more about Autism, but I couldn’t watch it in the middle of the day with the two boys around.
So after putting the boys to bed that night I cranked up the television and watched my recorded show. There was Jenny McCarthy, of Playboy and MTV fame, talking about her son’s slide into Autism. She talked of how he had started out such a normal child but after receiving his MMR vaccines he quickly spiraled down into Autism. This was not Matthew. He had never developed like other kids. He had Hypotonia (low muscle tone) and was in PT at the age of eight months to combat that problem. He flapped his hands and made repetitive vocalizations at three months old. He was not like Jenny’s son Evan. But Jenny continued to speak about her son’s Gastrointestinal issues and how following a certain protocol and diet allowed her to recover her son.
Did she say RECOVER? Did she say DIET? Yep, here was this television personality sitting on the Oprah Winfrey Show telling me she used that same diet I had been reading about to help recover her child. That was all I needed. That was the push I had been waiting for. Right after watching that program I went on line and read the rules to the Gluten Free/Casein Free (GFCF) diet and the next morning my son went cold turkey. This wasn’t perhaps the best idea I had ever had as we had practically no GFCF foods in our home. But I was not deterred. Matthew ate scrambled eggs (fried in oil, not butter) and bacon that morning. And he drank juice. I didn’t know what else to give him. My parents took me out shopping that day and we bought Jenny’s book, Louder than Words, which I devoured like a hungry child. And it was very nourishing. I learned a lot. We also went food shopping and I started out like most other newbies to the diet. I bought lots of substitutes, such as soy milk and yogurt, alternative “butters”, soy and rice flour breads and cereals. Anything I thought my son would eat and anything that was GFCF.
My husband was still out of town and I hadn’t told him what I had decided to do. I just did it. I don’t know why, maybe I thought he would think I was being silly or something, but I wanted to try this right away and I couldn’t wait for him to come home and discuss it with me.
Within three days our first of many miracles happened.
I had put the baby down for a nap and had locked Matthew behind the gate keeping him in our family room while I was in the adjacent kitchen making us dinner. Before I can tell you any more about our miracle I have to give you some background information. Matthew was always very verbal. By this I mean he had a wonderful ability to label things and he could perseverate on certain things such as the lights being on. He would repeat the phrase over and over, like a mantra to himself. “The light is on. The light is on. The light is on.” Over and over, but no real communication. And because of Matthew’s Hypotonia he never had the ability to climb on furniture, stairs, sliding boards, etc, but he did like to move our counter stools around. And that is exactly what he was doing while I was preparing dinner. I could hear the stools being pushed and pulled on the other side of the counter. Nothing unusual, just a very typical Matthew thing to do. The next thing that I was aware of was Matthew saying, “I watch Mommy make dinner”. I stopped in my tracks. When I looked, my son was sitting on the kitchen counter watching me make dinner. I cried. This was the beginning of our journey to recovery.
The GFCF diet requires that all gluten products and all casein products be removed from the child’s diet. That means no wheat, rye, barley, oats (some are now certified gluten free but not all), spelt and a few other lesser known grains, all milk products (although some people can eat ghee which is otherwise known as clarified butter) and any products derived from these foods such as malt vinegar. As one might guess this is not an easy task. Start to look at the ingredients in your favorite foods and you will find that gluten and casein are ubiquitous in the American diet. But thanks to the Celiac Foundation many new gluten free and casein free products are being offered in health food stores and many regular super markets and grocery stores. (side not – Celiacs can not tolerate gluten but this disease presents differently than Autism)
Why does this diet work? What does it do? I will try to give you a good idea of what the diet does, but I would suggest you pick up Healing the New Childhood Epidemic: Autism, ADHD, Asthma and Allergies by Kenneth Bock, MD. This book will not only go over the GFCF diet it will also address the additional biomedical interventions which have put Matthew on the path to recovery. There is a whole protocol developed by several doctors associated with each other through the group called Defeat Autism Now! (DAN!) which is a child of the Autism Research Institute (ARI). This protocol includes good nutrition, special diets (the GFCF diet is only one of several which have shown to help Autistics), supplementation, detoxification and medication. Obviously too much to discuss in this web blog article.
These DAN! Doctors believe that many Autistics have serious Gastrointestinal (GI) distress resulting in intestinal hyper-permeability (also known as Leaky gut), gut dysbiosis (abnormal gut flora), yeast overgrowth and possible viral infections of the gut. What the GFCF diet targets are the effects of the Leaky Gut. Leaky Gut Syndrome causes the intestinal lining of the gut to become inflamed and the microvilli (small fingerlike projections of the lining of the intestinal tract which serve as points of absorption) to become altered or damaged. These damaged microvilli cannot produce necessary enzymes that are essential for digestion and nutrient absorption. In addition, Leaky Gut Syndrome weakens the bond between the cells of the GI tract and allows for larger, not fully digested food molecules to pass into the blood stream. They become toxins which get passed on to the liver for it to deal with, but the liver can not cope with the overwhelming toxins and the body stores them in the tissue for the liver to deal with later. The liver becomes too overwhelmed by additional toxins leaking into the blood stream and therefore never gets back to the toxins stored in the tissue. The immune system sends out antibodies to fight these foreign substances and oxidants are produced which attack the body causing allergic reactions, pain and inflammation throughout the body. Additionally, one other thing happens to Autistics. When gluten and casein are broken down in the body they become opioids (think Opium) before they are fully digested.
When an Autistic has Leaky gut these opioids leak into the bloodstream and pass across the blood brain barrier and settle on the opioid receptors in the brain causing a sort of Autistic “fog” or “spaciness”. This is what the GFCF diet specifically targets. By fully removing gluten and casein from the diet one can eliminate the opioids and therefore remove the “fog”. This is what happened to Matthew. Once we placed him on the GFCF diet Matthew began to come back to us. He could focus more, he began to use more complex sentences and he became more “present” or “there”. His self stimulatory behaviors lessened. (Self Stims are classic Autistic features such as hand flapping, rocking, head banging, etc.) As we continued the diet we noticed additional “side effects” of the diet such as his bowel movements became more normal. Prior to placing him on the diet he constantly had horrible “poopies” which were mucus filled, green and acidic. He had chronic diarrhea. We were told this was “normal” with Autism and there was nothing to do about it. BUT. Like I said, there is always a but. But there is something that can be done and we did it. This diet and other diets like it, and other biomedical protocol.
Matthew is now almost four years old. He has been on the diet for over a year and we have been doing more of the DAN! protocol under the guidance of a DAN! doctor in our area. He currently stays on the GFCF diet, we have even found it necessary to remove gluten from his shampoos, body washes and even his toothpaste. He also takes a host of supplements to help combat additional problems. This is sort of the chicken and the egg, which came first? So we treat for all of them and we are seeing amazing results. Under our DAN! doctor’s advice he takes Cod Liver Oil, Vitamin C, Calcium, 5HTP, GABA, Folinic Acid, Glutathione, Probiotics, Vitamin B6, Magnesium, DiMethyGlycine (DMG), Super Nu-Thera (a mulit vitamin), Zinc, and Methy B12. These supplements target different levels in the DAN! protocol above.
What has happened to us since starting Matthew on the diet? We were so encouraged by the results of the diet that we decided to implement a full biomedical intervention. With this intervention we have gotten a son that most trained professionals have a difficult time noticing his Autistic traits. No, he is not fully recovered. Yet. But he is making amazing strides. He still gets ABA, OT, PT and Speech therapy. And he still goes to a special education pre-school. But his future is very bright. His neurologist from the world famous Johns Hopkins Hospital in Baltimore told us on a recent trip that Matthew no longer need to be seen at their facilities. He was doing so well that they released him from their service. The neurologist told us that we were doing everything right and that Matthew would probably be one of those guys that is a bit quirky but who has a natural gift for their work and would excel at their chosen field. He basically told us his diagnosis would be re-categorized from PDD-NOS to Aspergers. This is a step in the right direction. But my husband and I will not rest until we receive the diagnosis of no longer on the spectrum, ie Recovered.
It should be noted that this diet does not work for all children on the Autism spectrum, and it does appear to have better results if started earlier in life. But many adults have improved on the diet. Also, some children need even more restrictive diets that can target larger problems such as yeast overgrowth, high oxalates, other food allergies, and artificial flavoring and dye sensitivities. If you would like more information on any of these diet, DAN! doctors in your area and other biomedical interventions I would suggest going to the following websites:
And if you would like to follow Matthew’s progress please stop by my blog site and read all about him: Matthews Puzzle.
***Wow. That's all I can say. It is a long article, but well worth every word! It's amazing the progress Matthew has seen. I am so happy for you guys! This diet really sounds amazing and can really offer hope to parents who have children with autism. Thank you so much for sharing this!