Really? Is there any such thing as an Autism diet? It would be ideal to have a prescribed diet and recipes for our little sensory and picky eaters. But, as I keep saying in most of my posts, autism spectrum disorder is as broad as the number of children with the diagnosis! So, the reality is there is no one-size-fits-all diet that can take this diagnosis away. However, there is definitely a lot that you can do by just changing up things in the present set of foods that your child on the spectrum is consuming and you will not be able to believe the kind of changes you may see. As always, I will begin with our own example. If you have read my post on Managing Vs Treating Autism, you are already thinking of Autism as a medical illness with neurological and developmental implications and not as a mental illness with nothing else to do. I hope that the post has been a good starting point for you to understand that treating autism is as important as managing it with speech, Occupational or ABA therapies.
What is gluten and casein? We started with treating our child with an intervention which is as non-invasive as it can get, that is the GFCF Diet (Gluten free and Casein free)!! Gluten is one of the proteins in wheat and Casein is one of the proteins in dairy that is cow’s, goat’s or any other dairy milk and milk products. If you research you will read that these proteins are broken down into peptides by our stomach and then these peptides should ideally be broken down into amino acids by our small intestines. These amino acids get absorbed into our blood which then nourishes our bodies. So, gluten and casein are good stuff. However, in some bodies like our kids’ with ASD, this whole digestive process for these two proteins is messed up! They seem to have something known as the leaky-gut syndrome. Gut being the intestines in our body. The small intestines seem to allow these peptides to move into the bloodstream without being broken down into amino acids. And these peptides in the bloodstream make the children react and behave differently. Please note that not all paediatricians will tell you this as this is still in theory or taken as a hypothesis. It takes years to heal the gut lining. We made the shift to a gluten free diet after being extremely hesitant and after pondering over it for almost a year. In that year we only did the ABA or Applied Behavioural Analysis Therapy. I would say that we only managed the Autism and couldn’t get started on any other intervention. I was asked by the ABA supervisor if my son had food sensitivities and she mentioned that his dark circles, redness of eyes and constantly having a stuffy nose could be indicators. Since we had just moved into Johannesburg, I assumed these were environment allergies and was not aware of food sensitivities. He was on a paediatric antihistamine to manage the symptoms.I spent the year absorbing all the information from the DAN, Defeat Autism Now, Dr Woellers Website and then sending our child’s blood, stool and urine samples to the Great Plains Laboratory in USA. We did the Organic Acids Test(OAT), the Metals Hair Test, Comprehensive Stool Analysis and the IGG Food Allergy Test. There are more on the Great Plains Laboratory website, but these were enough to get us started.
The love and cravings for gluten and casein Until the reports came, I was just not prepared to change my child’s diet. He loved Nutella sandwiches, pasta, pizzas and Indian rotis (Indian bread). He would gulp down a whole glass of plain milk with nothing added to it and always made sure he reminded me to give him a portion of cheese every day. He is a very picky eater, and his foods have to be of certain textures or more specifically not a mix of textures! With regards to beverages he only had plain water, strawberry milk shake and plain milk. We would try everything from juices to chocolate milk to variants of milkshakes and have only tantrums and gagging so we didn’t force him. I mostly pressure-cooked vegies and it was blended into rice or mashed into roti rolls. The recipes on Dr Woellers’ website were super healthy, gluten and casein free recipes and I just couldn’t see my son eating any of it.
Implementing the diet..I was hoping to get off the hook if the lab results showed a negative on food sensitivities to gluten and casein. But that was not to be! The graph was clearly off limits. He tested very high on gluten and a little lesser than that on cow’s milk. He tested high on oxalates; he was sensitive to eggs as well. (There was other stuff which needed to be addressed from the other reports but we needed an expert for those aspects.) To us this meant that all of his favourite foods were to be removed. We didn’t have the heart so we decided to do it in phases. We first targeted to being GF i.e. gluten free while alongside we reduced consumption of dairy products. We are now 100% gluten free and it was much easier than I thought. We got gluten free all-purpose flour to make our own cakes, pancakes and cookies, we had gluten free ‘atta’ to make Indian breads, we found gluten free pasta and pizza joints that served GF pizzas. Being from the southern part of India, where rice and lentils are staples, it was easy for me to get back to native foods and slowly we got my son to take a liking to them. Foods like idli and dosa made from fermented rice and batter replaced bread and butter! There was a time when we were going steady with the gluten free diet and on a visit to India, we indulged him with butter naan and butter chicken a favourite combination, for two consecutive lunches and he got sick. He was all stuffy nosed and teary-eyed, and from then on there was no looking back. We never lapsed. There was no room for weakness. We started to teach him what foods he could have and what were gluten free. At school if there is a class celebration, I am informed by the teacher so I can send an extra gluten free cupcake or a favourite gluten free snack that he can enjoy with his peers while they have their goodies. He is now in a position to ask if the food he is being offered is gluten free or not.
The results Around the same time when the reports arrived, our son had a bad upper respiratory tract infection and the entire area was inflamed, before administering meds we had done an IgE test and the indicators were very high for dust mite, for Bermuda grass, certain plants and dog hair. We therefore decided to use hypoallergenic pillows and sheet protectors for his bed. I requested the gardeners to mow our lawn in the morning when he is at school. We took little steps that made a huge difference in reducing his allergies. The doctor asked us to use a non-sedating antihistamine on a permanent basis that will keep him off chronic inflammations. When we got on the gluten free diet, within a month or two, we just didn’t feel the need to use the antihistamine again! It was a very big deal; the ABA therapists were reporting that his focus levels were much more just because he wasn’t distracted by his stuffy nose! Actually, there is more to this. There was something that our son used to do – which is lie on his stomach for a while mostly after eating a meal. This actually is an indicator that something isn’t really right with how he was digesting food. He wasn’t consistent with his bowels either. He didn’t sleep through the nights and with being consistent with his 100%GF and almost 90% CF diet we managed to get his bowels and allergies in control. He still spends a lot of time on grass and outdoors but he doesn’t have the sort of allergic reactions that we saw earlier. Most parents with children having ASD now do the GFCF diet without doing the tests. That’s how good the effects can be. There are others who report they didn’t see changes but I believe they are a really small percentage.
Evaluating the intervention There is something every parent must do before taking up any intervention. It is called as the Autism Treatment Evaluation Checklist https://www.autism.org/autism-treatment-evaluation-checklist/ or more commonly known as ATEC scoring. This is basically a questionaire (which most of us parents are used to filing up) that has many questions on how your child is presently fairing with regards to social skills, speech, cognition and basic stuff like sleep,etc. The lesser the score the milder the symptoms of autism and the higher the score the more the impairment or autism suymptoms. If a neurotypical child is being score most likely the score will be less than 10. So an ATEC score less than 10 means your child has recovered!! As the name suggests it helps us analyse if the intervention a.k.a treatment is working for the child or not? So we score the child before starting the intervention and we score the child again after about a minimum of 30 days of doing the treatment. If the score is lesser it means the child has shown improvements with that intervention else you can choose to wait for more time and score or find a new intervention that ‘clicks’ with your child. This scoring system is very helpful because often the changes are very subtle and we fail to acknowlege or notice them. Like before starting on the ABA intervention my son had a score of 80+ but after 3 months of ABA he had 56. After implementing the GFCF diet for 6 months, we were down to 35. The ATEC is my best friend. It gives me hope and keeps me on my toes. We continued further with other interventions and we are now down to 28 and yet 10 seems so far!
What to watch out for? .While going on the GFCF diet it is very important to note the ingredients on say the GF flours or GF pasta. If it is mostly corn based, its best to stay away from them as corn these day is mostly genetically modified (GMO). If you are able to source GMO-free and organic products it would be healthier options. These days more lentil-based gluten free products are available which an be better substitutes. Along with gluten and casein sensitivities, there are foods that are high in salicylates, histamines and oxalates which the children aren’t tolerating well. If the child is on a GFCF diet but is also taking foods rich in any of the three- salicylates, histamines and oxalates, you will see mood swings, out bursts and inflammation. If you are unaware of these factors you may assume the GFCF diet isn’t working! Histamine and oxalate tests are also available these days so based on that you will have to eliminate or at least reduce their intake. For instance, we took our child off spinach and used tomatoes, almond flour and almond milk moderately as they are high in oxalate. Google can easily provide you with the oxalate, salicylate or histamine food lists. Also say No to additives, preservatives, MSG, and food flavourings and colourings. The website https://nourishinghope.com is very informative and is mostly intended for parents who have kids on the spectrum.
When will he ever be off the GFCF diet? I don’t know. I can only conclude by saying “It’s a diet worth all the troubles and the food we eat is what we are. What our kids can be is therefore in our own hands.”