Before my children were born, I used to have people ask me what I thought of the GFCF diet for children with Autism. I always told them that Autism was a neurological difference that had nothing to do with diet and that if symptoms were affected by diet, then it was never Autism to begin with and more likely some type of allergy or food sensitivity. However, in the last year I have completely changed my mind on this and would like to take a moment to sit down and explain why.
Autism is a psychological diagnosis. The purpose of psychological diagnoses is not to uncover the cause (although there are some psychologists that do study brain scans, etc) but to group people by similar symptoms so that we can quickly identify treatment methods that may improve their quality of life. Because of research in Psychology and related fields, we now know that speech therapy (specifically approaches like Verbal Behavior), Occupational Therapy (specifically the development of a good sensory diet), and Applied Behavior Analysis (including a host of different protocols based on ABA theory) can make a huge difference in the ability of children (and later adults) on the spectrum to function in daily life! However, because Autism is a psychological diagnosis, there could be many different underlying causes for Autism. For example, let’s say you have a broken leg. Why do you have your broken leg? Perhaps you broke your leg falling off of a ladder. Does that mean everyone with a broken leg broke their leg falling off a ladder? No, perhaps some people were in an explosion, perhaps others have a genetic disorder that causes their bones to fracture easily, perhaps still others developed stress fractures while running. Will the same treatment methods be effective? In general, yes, but some people may require surgery, others may require just a boot, still others might require a plaster cast, and some may even loose their leg. The same if true for Autism. The symptoms are similar across people and treatment options fit into the same general category. However, what caused/triggered the Autism symptoms may vary greatly!
I used to believe that Autism was simply a neurological difference inborn into people. While I still think that is a possibility, I also know that not all neurological differences are caused by the same thing. Sometimes neurological differences are genetic, sometimes they are due to a genetic mutation, and still sometimes they are due to some kind of environmental factor presented either prenatally or postnatally. Medical science is at a point that we can now identify many genetic differences/mutations. However, there are endless environmental factors to evaluate, and it is definitely more difficult to look back and try to figure out what may have triggered a neurological difference. For example, are you certain the behavioral symptoms occurred at the same time the neurological differences developed? Are you certain that the particular environmental factor had an immediate effect? Are you certain that you noticed behavioral symptoms as soon as the difference occurred or is it possible that the symptoms weren’t quite as noticeable initially because of the developmental stage or personality of the child? Does the child have a patient history of brain scans to indicate the point at which neurological differences developed? You can see how this area of research could be quite tricky! So what was it that converted me from being a Behavioral School Psychologist to a Bio-Medical Autism Mom? It was my children.
Jessica started life out with some pretty classic Autism symptoms: going on a nap strike at 2 months old and only sleeping maybe 9 hours every 24 hours, sensory issues relating to early sleep issues, being very difficult to get pictures of her looking at the camera, delayed babbling, first and only word for a long time was “thank you,” no pointing until 3+ years old, unable to hold interest/play with toys “correctly,” over developed interest in “feces painting,” stimming by 18 months, etc, etc, etc. Jessica benefited from having ABA from the very beginning because that had become the way I related to children. She also started speech therapy and occupational therapy by 2.5 years old. I was in a bit of denial and chose to delay getting a diagnosis until 3.5 years old. She was assessed by a multidisciplinary team. Most of the assessments had been done already by her therapists, but the IQ test (she had a 60 point span between tests) and the ADOS test both indicated that she was most definitely on the Autism Spectrum. We saw no need at the time to see a neurologist because there were no other symptoms that might indicate any other type of neurological issue (such as hearing loss, vision problems, seizures, motor planning issues, etc). She did have a particularly large head (90% as opposed to the rest of her body 25%) which has been noted in many children on the Autism Spectrum. Several studies actually indicate that the larger head size in these cases is due to brain inflammation. However, we saw no reason to allocate money away from therapy for further testing that would likely not contribute to improved symptoms in her case.
We continued with Speech therapy, Occupational Therapy, home ABA therapy, and added in Physical therapy and a variety of activities to target social/motor delays. I soon realized that my ADHD/APD diagnosis should have been an Autism Spectrum Disorder because Jessica could almost be my clone. This was particularly helpful when working with her because I have always understood her. She continued to improve with our multidisciplinary approach, but it was still difficult to maintain the right balance of sensory input. However, in January of 2012 (just last year), Jessica was using the potty, and I saw some orange oil that was not dispersing into the rest of the water. I took her off the potty and realized that she was swollen and had the orange oil all over her female parts. I had been watching her like a hawk all night so I knew she hadn’t gotten into anything or stuck anything down there! It was evening (of course), so I cleaned her up as best I could and took her to the doctor the next morning. The doctor did an exam and ran a urine analysis but didn’t find anything and said to bring her back if it happened again. In some ways it reminded me of some yeast infection symptoms I’d had several years before so I decided to put her on the Yeast Connection Diet for a few days just in case she was hurting. Within 24 hours of removing all lactose, fructose, sucrose, and most starches, Jessica stopped rocking!!! Several days later we went to Chickafila and ordered her grilled nuggets with fries and water (no ketchup). Within 2 hours she was rocking again. Turns out the chicken and the fries both had sugar in them. Within 24 hours of being back on the diet, Jessica stopped rocking again.
At this point I realized there had to be some sort of connection in regard to at least some of Jessica’s Autism symptoms and diet. Since I couldn’t get our pediatrician to listen to my concerns, I took her to a DAN doctor who did something that no other doctor had ever done: a blood test, a spit test, and a stool test. Aside: When working with children who have challenges with communication and sensory processing, internal tests should be the FIRST thing doctors do! How can you expect to be able to tell if your child isn’t feeling well if they can’t communicate clearly and they don’t necessarily feel it the same way other people do?!?! When the tests came back, we discovered that quite a few things were “off” but most disturbingly, Jessica had 0 lactobacillus in her stool. This could cause her system to be overrun with yeast. Incidentally, I had heard from many parents of girls on the Autism spectrum that many of their girls had trouble with recurrent yeast infections. Previously I had chalked it up to the typical favorite diet of children on the spectrum: refined sugars, flours, and dairy. However, I had worked with Jessica on feeding issues since her first spoonful of puree, and she was a very good eater.
Eventually we ended up seeing an immunologist because John was breaking out in hives around his mouth anytime he at eggs and he had recently had large knots develop on his legs where he had received vaccines (I had wondered if it might be an egg allergy). The immunologist figured out pretty quickly that all 3 of us had Celiac Disease. Although we had been tested multiple times using a blood test and my brother had even had an endoscopy, our tests always came back negative until we did a stool test for Anti-Gliadin. Unfortunately, even after going completely gluten free, my symptoms (severe arthritis) had not subsided, so I asked the immunologist if we could do a more sensitive food allergy test, and he recommended an IgE/IgG blood test for a panel of foods. I decided to go ahead and do it on the kids too just to make sure they weren’t also having problems and just unable to communicate how they felt. I am VERY glad that I did because as it turns out we all had at least some type of reaction to about 120 food out of 150, and since I am older and able to communicate how my reactions make me feel, we were able to determine that I could feel reactions that were only a .01 reaction (for example sesame seeds were a .01 reaction and eating them made my hands tingle and go numb)! As I said earlier, we already know that people on the Autism spectrum often experience sensory input differently from other people….so why not experience food reactions differently as well?!?
As it turned out, the gene I passed on to my kids that gave us all Celiac was passed down to me by my mother. My dad has the other Celiac gene, and almost all of my siblings and I have at least one of the genes. My brother has both genes and lost his gall bladder before we figured out that he had Celiac. My mother likely got it from her mother who died at 55 of heart disease….inflammation of the heart…..inflammation is the body’s way of saying “I am not happy!” I have since read many other stories of people with Celiac who have experienced inflammation in many different parts of their bodies….just a few I have heard of include: joints, heart, intestines, larynx, lungs, gall bladder, and A LOT more! Many with Celiac have also reported that their depression or anxiety was relieved once they finally went gluten free.
Because of how many food sensitivities we had developed and how much damage Jessica specifically had to her digestive tract (although John had a distended tummy, very fine anorexic looking hair, and was very lethargic), we quickly realized that modern medicine was unlikely to be much help because modern medicine focuses on group design and what works for the majority of people. We were clearly NOT the majority of people!!! We ended up seeing a Holistic Nutritionist who uses a technique called Nutritional Response Testing (NRT). I have to admit that out of all the things I have ended up doing because of our journey with Autism and food issues, NRT was probably the thing I was the MOST skeptical about (I have always been a modern medicine type of girl); however, over the last several months, I have seen my arthritis disappear after 3 years of excruciating pain, I have seen John stop needing naps, become more energetic, start growing again, grow thicker curlier hair, and some of his delays improve, I have seen Jessica mostly leave stimming behind and communicate/interact in social situations with minimal to no assistance! And we are not done yet!!!
Conclusions: I believe that at least in some cases, Autism may be the result of a child with undiagnosed Celiac who may even be experiencing inflammation of the brain. Do I think it is “simple Celiac” or “simply a food allergy?” No. Unfortunately, when you are talking about the development of a child, it is kind of like opening a Pandora’s box. You cannot go back and change the experiences of the child during critical periods of brain development, but you can do your best to provide the optimal environment to heal any internal damage and help that child develop the tools necessary for living that he or she may have missed.
If you are interested in further information, check out:
The Autism Revolution – An up to date and positive overview of what you can do to help your child
Healing and Preventing Autism – A parent-friendly guide to the biomedical approach to treating Autism.
Healing the New Childhood Epidemics – A scientific explanation of the biomedical approach to treating Autism geared for interested parents.
Changing the Course of Autism – A very scientific explanation of the biomedical approach to treating Autism geared for medical professionals.
Talk About Curing Autism Now – Autism website that also has a lot of great information on food testing, recipes, substitutions, etc.
Enterolab – The company we used to test our stool for anti-gliadin.
Allermetrix – The company we used for IgE/IgG food testing.
ALCAT – Another company that does IgE/IgG food testing.