Children on the autism spectrum are at risk for all sorts of gastrointestinal and nutritional challenges: gastroesophageal reflux disease (GERD), chronic diarrhea or constipation, food regurgitation, food allergies and intolerances, feeding problems, etc. My six-year-old granddaughter, for example, had to get all of her food through a g-tube for her first three years, and after that it was a continual struggle, even with the help of therapists, to get her to eat. Today, thank goodness, her feeding problems are mostly over.
The fact is that it is common for autistic children to have challenges with nutrition. Of course it’s usually their parents who make the rules and strategies regarding food. And we grandparents are expected to follow suit when our grandchildren are in our care.
But grandparents can be helpful in a very meaningful way: we can do research regarding our grandchildren’s challenges and, if welcomed, we can share what we learn with our grandchildren’s parents. “It’s great that you now have Angelina on this special diet that’s going to be helpful for GERD,” I might say to Angelina’s parents. “If you like, I can do research to see if there are additional strategies that are recommended by some of the big medical centers.” Then I might explore the websites of institutions such as Johns Hopkins, Duke, and/or Cleveland Clinic. I’ve learned that all you have to do is Google the name of a medical facility followed by the words “autism center” and you’ll usually arrive at their expertise regarding autism.
Our grandchildren’s parents are usually so busy with daily challenges that they seldom have time for this sort of research. Their information often comes from word of mouth from other parents or from testimonials on Facebook or ads on the Internet.
The GFCF diet (gluten-free/casein-free – no wheat, barley, rye, milk or dairy) is currently being embraced by a lot of autism parents as something that is scientifically proven to be productive for autism, to lessen problem behaviors, to enhance speech development, to even “cure” autism. The Ketogenic diet (high fat, low carbs) is another diet that autism parents are embracing; they say it relieves seizure disorders. There’s the Yeast-free diet (eliminate yeast and sugars), the Feingold diet (eliminates additives and chemicals), and a variety of custom-concocted diets that claim to do positive things for children with autism. Each of these special diets is accompanied by heartfelt praise by parents who have seen its success in their own children. The same is true for all sorts of dietary supplements.
Sadly, in spite of claims to the contrary, no diet has yet been scientifically proven to be an effective treatment for autism’s symptoms. You can find them discussed on the websites of the nation’s leading medical centers, and you’ll see the results of research. The GRCF diet, for example, does have scientific merit to its reasoning, but its effectiveness is not supported by medical research. Hopefully a beneficial autism-specific diet will one day be discovered and proven, but thus far it doesn’t exist.
Every special diet – whether for autism or not – is accompanied by challenges. The GFCF diet, for example, comes with a need to make up for lost fiber, nutrients, calcium and Vitamin D – all of which are vital for healthy growth and development. The Keto diet leads to poor growth, poor weight gain, and increased cholesterol. Dietary supplements – vitamins, minerals, probiotics, etc. – come with the risk of taking too much and/or significant contraindications with other supplements and medicines.
Many parents are not aware that dietary supplements receive very little oversight by the Food and Drug Administration. For example, the FDA does NOT review them for safety and effectiveness. The manufacturers oversee themselves. The FDA gets involved only after there are significant complaints. Thus the information we receive regarding a specific bottle of Vitamin C or Calcium pills is provided totally by the manufacturer and without review or confirmation by the FDA or by any other public regulatory agency.
Every person with autism is different, and each person’s diet and therapy needs should be tailored to that person’s specific medical challenges. For example, constipation requires one type of diet, diarrhea another. Someone just now learning to swallow requires one type of diet, someone who overeats requires another.
Dieticians and nutritionists agree on one fundamental thing: diets that are less processed are best. They are not only easier to digest and absorb, but they also contain fewer toxins.
We autism grandparents are often aware of the specific dietary challenges of our own grandchildren, and we can be helpful not only go doing research, but also by knowing that our own grandchildren’s dietary needs are unique.