So you’ve tried it, and the autism diet didn’t work for your child. Hopefully, you’ve not completely given up on diet for autism. There are a number of reasons why you may not have seen the results you were wishing for.
In this post:
You’ll learn 8 reasons that the GFCF diet may not have helped your kiddo. I’ll share with you the 3 most common reasons the autism diet doesn’t work , and I’ll also give you 5 more things to consider when evaluating diet for autism.
By the end of this article, it’s my hope that you will want to give diet another shot.
Thinking Of Trying The GFCF or Autism Diet For The First Time??
If you’re thinking of trying the autism diet and wondering if it really does work, I wrote a more relevant article titled, “Can the autism diet help my child”. I also have a complete guide to the GFCF diet to help you get started.
In short, yes, the diet can help, but keep reading and decide for yourself. This an in-depth piece that discusses both sides of the diet for autism debate.
BTW: GFCF Diet = Autism Diet
You’ll notice I use GFCF and autism diet interchangeably. The GFCF diet is one of many different diets for autism. GFCF is the most basic, and it’s where most parents start. Other diets are more refined/stricter versions of the GFCF diet**
Why The Autism Diet Didn’t Work For Your Child
Julie Matthews is an expert on nutrition and dietary approaches for autism. In her estimation, 85% of kids can be helped using a special diet for autism. She also suggests that there are 3 main reasons many diets fail to produce desired outcomes.
The Top 3 Reasons Why The Autism Diet Didn’t Work For Your Child (expert opinion)
- 100% Compliance
- Not Enough Time
- Too Much Packaged Food
I talk to parents alot and read what they have to say across the interwebs as well. Inevitably, I find these are the same reasons the autism diet likely didn’t work for most.
BUT First:
While you may be thinking that the autism diet didn’t work, the opposite may actually be true. It did help, but in ways you were not looking for.
I Almost Gave Up On The Diet Too
My son has been GFCF for 10 years now. There was a time when we almost gave up diet for his autism. My wife and I were ready to quit after about 6 months.
We did not see any big changes in speech, motor skills, social skills, or any improvements in his autism. We briefly discussed it and both agreed to take our son to his scheduled doctor’s appointment and see what he had to say.
The Doctor Unknowingly Convinced Us To Keep Going
We did not tell the doc that we were planning on quitting, but we wanted to hear what he had to say before completely quitting. Basically, we put the responsibility for convincing us to continue squarely on that doctor’s shoulders (without telling him).
Without any idea, our doctor proceeded to go through the symptoms we mentioned at his first 2 appointments.
- Is he still getting rashes? -No
- Is he still waking up at 2am? -No
- Has his aggression gotten better? -Yes
- Is he going to the bathroom more regular? -Yes
- Is he still getting sick all the time? -No
Then, he looked at the actual blood testing and started listing off all the nutrients that have gotten better. Some levels were super low before we started the GFCF diet, and now they were in the normal range.
There were other things we learned in this visit as well, but without even realizing it, this doctor renewed our faith in diet. It remains strong to this day almost a decade later.
The point of this story is things may be getting better even if it is not obvious. Some of our kids are quite unhealthy, or they may have really complicated issues. It will take more time for them to show major progress. Their health is likely improving even if their autism symptoms do not appear to be.
Top 3 Reasons The Autism Diet Didn’t Work:
#1 You Didn’t Go “All-In”
Most of the time, the GFCF diet didn’t work because it wasn’t followed strictly enough. The child must be 100% gluten and casein free, and I would say soy free as well. There are no cheat days for the autism diet.
Why Are There No Cheat Days?
Many kids with autism are sensitive to gluten, casein, and even soy. This essentially means that their bodies are producing antibodies against these foods much like they would a virus. Their immune system sees gluten, casein, and soy as foreign invaders and attacks them.
Therefore, every time they consume these proteins, the immune response springs into action. Constant or repeated exposure to these foods ensure that the body continues to make antibodies. This can lead to inflammation, which is a big part of what we are trying to bring down.
I often hear parents say that their kids are “mostly gluten and casein free”. They’ will say they’re 90% GFCFSF. Some parents even feed their kids strict GFCF at home, but then allow them to eat school lunch or go out to eat once a week.
This will not help. It may help some kids for a little while, but to get the full benefits, you have to go all-in.
You have to be 100% GFCF 100% of the time.
It Takes Time To Heal
It can take up to 6 months for antibodies against gluten, casein, and soy to be completely gone. (maybe even longer) This means if you’re allowing your child to have a cupcake at a birthday party just once every 3 months, the immune system never stops making antibodies.
Tip: Make a homemade GFCF cupcakes and snacks when taking your child to birthday parties.
Hidden Sources: & Unexpected Diet Infractions
There are thousands of products containing hidden sources of gluten, casein, and soy. Many personal care products like shampoos and lotions also contain ingredients derived from these foods.
Things like Play-do also contain gluten. If you’re ASD kid is anything like mine, then they probably stick that play-do in their mouth while you’re not looking. They can also absorb it through the skin.
Model Magic or Kinetic Sand is a great alternative. Check out this page for other choices too.
Parents may be inadvertently giving their kids gluten, casein, and soy. I have a list of food ingredients to avoid as part of my Free GFCF Jumpstart Kit. Enter your email at the end of this article and I’ll send you a copy.
Alternatively, you can check out this article here to help you find those hidden sources.
Top 3 Reasons The Autism Diet Didn’t Work:
#2 Not Enough TIme
Another common reason that the GFCF diet didn’t work is because you may have given up too soon. It takes time for the immune system to chill out and the child’s body to heal. Remember, it can take up to 6 months for the body to stop producing antibodies. Likewise, it can take months before you see any changes.
If you only try the GFCF diet for a few weeks, you may deem the diet ineffective and stop too soon. Most docs recommend you stick with the diet for 6 months to a year.
There are a lot of complex biochemical cycles that are disrupted here, and they need time to start working better. Give the body a realistic shot.
You did the hard part by starting, so don’t give up too early! Your child will thank you.
Top 3 Reasons The Autism Diet Didn’t Work:
#3 Too Many Packaged Foods
Going gluten, casein, and soy free is a huge disruption for most families. It is not an easy change to make. Thankfully, the bevy of packaged GFCF snacks and foods help make this shift easier for us parents.
The problem is that many of us rely too heavily on these packaged allergy friendly foods. This is one of my biggest regrets with my son. We relied mostly on packaged or convenience foods for almost 2 years before realizing that we should be feeding our boy a whole food based diet or what I now call a healing GFCF diet.
Why Are GFCF Packaged Foods An Issue?
The majority of these foods contain tons of sugar and other unhealthy ingredients that do not promote healing. Sugar can also be inflammatory, and artificial ingredients like MSG, flavoring, and preservatives can be almost as bad as gluten and casein.
It’s universally accepted that most highly processed and packaged foods are not healthy. We parents must remember that just because there is a gluten-free or “whatever” free label on the package does not mean it’s good for your child’s health.
Parents who rely on these prepackaged foods are much less likely to see a benefit from any autism diet.
Low Quality Foods
Another issue with packaged foods is that most of them are made from subpar ingredients or foods that can also be problematic for us. Corn, rice, starches, yeast, and poor quality, inflammatory oils (like safflower, canola, rice bran…etc) are staples in GFCF compliant packaged foods.
Again, these ingredients do not promote healing and many can also be inflammatory. This is why I always recommend that parents start with these convenience foods, but begin working towards a whole-food based GFCF diet.
For more on this and other helpful information, check out my complete guide to the GFCF diet.
Other Reasons The GFCF Diet Didn’t Work
The 3 reasons listed above are definitely the most common reasons the gfcf diet didn’t work, but they are not the only ones. There’s actually a variety of reasons that some kids don’t see benefit from diet alone.
I always say that diet is the first step in helping our kids with autism feel better. It is the foundation for all future treatments and/or therapies. Because our kids have a weak digestive system, they likely also have other food sensitivities, gut dysbiosis, leaky gut and/or nutrient deficiencies.
Kids with autism may also need a detoxification program to eliminate excess metals like mercury and aluminum. They may have chronic infections like SIBO, Lyme Disease or Candida. All of these things need to be addressed in addition to diet.
Time To Get Help
These things are more complex for us parents to deal with alone, so this is really where you need to seek help from a doctor. You’ll want to find one that has knowledge of these issues as many doctors do not.
I would start by looking for a good MAPS doctor (Medical Academy of Pediatric Special Needs). A doctor trained in functional or integrative medicine can also help. Naturopathic docs and some chiropractors have training in this area too.
Search around and find local Facebook groups, or TACA chapters in your area. They will be more familiar with the options available in your specific area.
Feeling Overwhelmed??
If your head is beginning to spin, stop reading now. You’re likely to be even more overwhelmed by the next section. Bookmark this page, and come back in a day or two after you’ve had some time to digest the previous information.
Feel free to email me any specific questions/concerns you may have: [email protected].
Other Reasons The GFCF Diet Didn’t Work
Food Sensitivities Beyond Gluten, Casein, & Soy
If you recall from earlier, many kids on the spectrum are sensitive to gluten, casein, and often soy, but they can also develop sensitivities to other foods as well. The most common tend are eggs, rice and other grains, corn, and nuts/seeds.
Any food can trigger an immune response, so it’s important to discover any food sensitivities your child may have. Your doctor can run both IgE (true allergies) and IgG (sensitivity) testing to help guide you in the right direction.
You can also do an Elimination Diet to help root out and identify any food sensitivities.
Additional Problems From Certain Food Compounds
Here’s where things get really tricky. There are different compounds in food that can be problematic for many people especially kids on the spectrum.
These include lectins, oxalates, phenols and salicylates, histamines, glutamates, and FODMAPS. These compounds are found largely in healthy foods like fruits, veggies, nuts and seeds.
This area goes beyond the scope of this article, but it is something to be aware of. I will link a video of my “go-to” person on diet and nutrition, Julie Matthews. In this video she gives you a brief overview of these food compounds.
You can also check out Julie’s book, “Nourishing Hope For Autism”. It will teach you all you need to know about these compounds and what dietary approach is best. Again, I recommend you find a good doctor to help you through this.
Other Reasons The GFCF Diet Didn’t Work
#4 Gut Dysbiosis
Another common issue we see in kids with autism is gut dysbiosis. This means that the microbiome, or the microbes living inside your gut, are out of balance. The probiotic microbes (aka the good guys) are outnumbered by the pathogenic ones (aka the bad guys).
Probiotic bacteria are very important to our health. They produce certain nutrients, help us digest our food, and maintain the integrity of our gut lining. Gut dysbiosis can lead to a number of problems including GI issues, candida overgrowth, SIBO, new food sensitivities, nutrient deficiencies, inflammation, and leaky gut.
#5 Leaky Gut
Leaky gut, called intestinal permeability by doctors, is exactly what it sounds like. Your gut essentially has cracks in it that is allowing partially digested food through. This is how new food sensitivities develop, and it leads to even more nutrient deficiencies.
Furthermore, many integrative medical doctors believe leaky gut is at the heart of many chronic diseases, and it is crucial to heal the gut in order to see any benefit from the autism diet.
Other Reasons The GFCF Diet Didn’t Work
#6 Chronic Infections
Poor gut health also leads to a weak or overworked immune system. This means the body is unable to mount a complete defense against infections. It may be able to keep it reasonably in check, but chronic low level infections, like Herpes, Epstein Barr, Lyme, and even parasites like babesia and bartonella have been reported to be issues for kids with autism.
Again, this goes beyond the scope of this article, but something worth mentioning to your doctor.
#7 Toxin Overload
Another issue common in kids with autism is they have a high toxin overload. This could be due to genetic deficits and/or broken detoxification systems. Whatever the reason, kids with autism are unable to detoxify things from the environment, their food, and internal toxins (ie: ammonia from protein digestion).
These toxins build up within their body and cause inflammation and further disruptions to cognitive function, digestion, and other biochemical pathways making all of the above issues even bigger problems.
You can read this article here that talks about the tools we are using to help our son detoxify, and then talk with your doctor on the best protocol for your child.
#8 Nutrient Deficiencies
You’ve just read about many issues facing our kids with autism, and all of these contribute to the final reason the autism diet didn’t work. Due to toxins, infections, leaky gut, and general hyper-pickiness kids with autism often end up with deficits in a variety of nutrients.
Plus, many kids have broken digestive systems and are not able to break down and absorb even the healthiest of food. These deficits could even be the cause of their extreme picky eating. A zinc deficiency can affect their ability to taste the food.
An inability to digest protein can lead to excess ammonia which can cause the child not to feel well and they will refuse to eat meat or other high protein foods. It’s very important to work with your child’s doctor to determine what deficits they may have and help you correct them.
Once those nutrients are no longer deficient, the child starts feeling better, and you may be amazed at the difference in the behavior, sleep, immune strength, cognitive function, and overall happiness.
8 Reasons The Autism Diet Didn’t Work For Your Child
In Summary:
As you can see healing our kids with autism is far more complex than simply placing them on a GFCF diet. For some lucky kids, removing gluten and casein are all that’s required to help their body’s start to function better thus helping them feel better.
Unfortunately, it’s a complex puzzle for most of us, and we cannot give up on our kids after a few short days, weeks or even months. Therefore, if you do not see results right away, refine the diet more, find a doctor to guide your child’s progress, and seek help from other experienced autism parents.
If you found the autism diet didn’t work for you, that doesn’t mean your child cannot still benefit from the diet. It only means you have to keep digging.
Are You Ready To Try Again (or for the first time)??
How can I help?
Leave a question or comment on why you think the autism diet didn’t work below!
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