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Does The "Autism Diet" Work?

By Sierra Black |

Gluten-free bread is a treat for kids on a GFCF diet

Over a quarter of kids with autism spectrum diagnoses follow some kind of special diet. A gluten-free casein-free diet is the most common. Parents keep their kids on this heavily restricted diets because they say the diets work miracles. They’re reported to improve everything from sleep to gastrointestinal problems to behavioral issues.

Do they really work? Parents swear by them, but there’s no science to back up the claims. In this week’s Science of Kids column, my colleague Heather explores the truth about the autism diet.

Recent studies have shown no benefit to autistic kids following a gluten-free diet. The studies have been small, though, and the results aren’t definitive. Legions of parents believe the diets improve life for their individual kids. What’s going on?

One possibility Heather brings up is that a gluten-free, casein-free diet might just improve energy and focus for most kids. It may be that there’s a general benefit to following such a diet, that has been noticed and popularized among families of kids with autism.

She also reasons that a gluten-free diet might help some kids and not others because autism is really a collection of disorders. She writes:

My guess, though, is that science doesn’t match parent reports in part because autism is not one disorder. Hundreds of genes and an unknown list of environmental influences wrap together to produce the outward symptoms of what we know as autism — and in different combinations for different children. So far we don’t understand how to divide these children up in a meaningful way, we only know how to group them together and call it a “spectrum.” In reality, autism is probably multiple disorders, each with its own profile of genes, behavioral struggles, and physical symptoms.

For parents, she notes, the only evidence they need is the improvement in their own kids. Whether science supports it or not, there’s little risk and a lot of possible gain to trying out dietary restrictions as a treatment.

A gluten-free diet is a lot of work, though, and can be expensive to maintain in a healthy way. If this restricted diet is another form of snake oil being sold to desperate parents, is it really harmless? Might their resources be better spent on other treatment approaches?

Again, in the absence of more data, it’s impossible to say. What does seem clear is that more research should be done on how these diets benefit autistic children, if they do at all.

What do you think? Have you tried a GFCF diet with your child? Did it work wonders, or seem ineffective?

Photo: lydiajoy1

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About Sierra Black

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Sierra Black

Sierra Black lives, writes and raises her kids in the Boston area. She loves irreverence, hates housework and wants to be a writer and mom when she grows up. Read bio and latest posts → Read Sierra's latest posts →

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19 thoughts on “Does The "Autism Diet" Work?

  1. Michele says:

    I’ve heard so many stories of the autism diet working wonders in children – mostly anecdotal, but I’ve actually witnessed some of these results myself, but am still uncertain of just how effective it really is. Heather raises an excellent point regarding the complexity and diversity of autism symptoms, and it’s quite likely that there is no single treatment that will benefit ALL children on the spectrum as a result.

    But I think there might be something else at play here as well, but it’s just a hunch: The autism diet is indeed incredibly complicated and time consuming and requires a tremendous amount of effort. I think it’s entirely possible that some parents swear by it simply because it’s ONE element of their child’s disorder that they can control. Much like anorexia nervosa often has it’s roots in providing a sense of control to the afflicted, this diet might function similarly, because lord knows there’s not much else related to autism that parents can control.

  2. Diera says:

    I was going to say roughly what Michele said. I think it’s possible that at least in some cases, parents who swear by these diets may not be being objective about how much they help. When the person who is doing the intervention is the same person who is reporting on how much the intervention helps, you’ve got to wonder if they’re not seeing what they hope to see a little bit. Also, all kids, even autistic ones, sometimes make big leaps in development on their own. If you’re a parent who is really, really trying to help your child, you may be trying lots of different things – gluten free diet for a while, fish oil for a while, herbal supplements for a while, whatever – and there’s a good chance that if you’re trying lots of things all the time, a leap in development is going to happen during one of those attempts, and you’re going to mistakenly attribute the leap to the therapy. I’m not saying that no children are helped by dietary interventions, but because of these factors it may be many fewer than those whose parents believe they were helped.

  3. Julia woodthorpe says:

    My daughter is on a diet without gluten or casiene. Stomach aches and reflux seem to have completely stopped but her autistic traites are still very evident.
    However, if this diet brings her some physical comfort, real or a placebo effect, I’m all for it.

  4. Stephanie says:

    I absolutely hate the diet and have tried stopping it countless times only to be reminded that I hate the emergency room even more! We do the diet w our most severely affected son who has extreme stomach pain, gas, and bloating. our other two boys also have autism but not the tummy problems. They are a lot higher functioning. Go figure! I wish doctors could tell us why. It is so tiring.

  5. Martin M says:

    I believe its irresponsible to question autism diets. How could they not help?

    THOUSANDS of parents around the world ARE and HAVE effectively applied nutrition-focused healing diets for their children with autism, and thousands of children are happier and healthier because of it. For you to recommend that parents of children with autism IGNORE the scientifically undeniable human reality that foods affects the body (and behavior) is silly.

    For autism (or anyone for that matter), “diet” means making calculated (intentional) omissions and additions to one’s food choices. Everyone from Hippocrates to Homer Simpson knows that food affects the body’s functioning and overall health. When one desires to improve health (autism or ANY disorder), addressing diet should always be part of one’s strategy.

    To NOT comprehend and support this should be akin to malpractice. You’d never tell a diabetic or celiac sufferer that their “restrictive diet” is a problem, let’s not be so ignorant with autism (or ADHD, Asthma, Cancer, etc…).

    Your assertions are seriously misguided, and flat out WRONG about diets for autism. And in complete contrast to respected mainstream pediatrician Dr. Bob Sears who said “”I hope that parents everywhere consider trying the GFCF diet for their child,” and television’s Dr. Oz who believes that “some of the most promising treatments for autism come from changing the foods that the child is eating.

    Diet for Autism comprises omitting known problematic foods/substances and adding necessary nutrients. Multiple studies indicate that nutrient deficiencies are common with autism. Being attentive to diet (what children eat) is 100% common sense. Here’s a short referenced article about Food and Autism http://www.generationrescue.org/latest-news/biomedical-therapies/food-matters-for-autism/

    Autism Diets are not about restriction only – to do so without conscious attention to the purpose and intent of what’s meant to be a healing intervention is unsafe and NOT the onus of autism diets. Rather, autism diets are a Nutritional Intervention – focus on healing the body through food choices. Honestly, can anyone argue against such a principle and practice? Especially since survey after survey of parents indicate that MOST children who follow a healing diet see some improvement in their autism symptoms – which again, makes sense.

    Autism affects the entire body – most children have some physical ailments and symptoms (not just gastrointestinal), AND what happens in the body affects the brain. Whether or not you believe this undeniable reality (every have a glass of wine “go to your head?”), more and more parents and progressive (i.e. smart and willing to learn and listen to parents) physicians are paying attention to what children EAT and how their diets can affect their physical and cognitive healing. This is both ancient wisdom and modern learning.

    2009′s “Most Progressive Health Book” is called “Nourishing Hope for Autism.” The book stands as a definitive articulation of the scientific rationale for dietary intervention for ASD – which is perhaps the most substantiated healthful intervention for autism. Also view the websites for Autism Research Institute, Generation Rescue, Talk About Curing Autism, National Autism Association, and many many other esteemed autism research and advocacy organizations- and you’ll identify HUNDREDS of scientific studies about food, nutrition, diet, and autism – all of which point to a data driven conclusion that children with ASD are better off following a strategic, nutrition centered dietary regime, than not.

    Again, this article is irresponsible – it’s a rehash of bogus reports from last year – why are you releasing it AGAIN now? What is your intention? If you read the Pediatrics report, you realize that every point it makes leads to the same data driven conclusion: do something with diet.

    The greatest autism awareness that should be reported is the unquestionable reality that children with autism can heal, they can improve, they can gain relief from physical pain that many suffer, and their life potential can be significantly enhanced…IF we allow ourselves to listen and learn – and TAKE CHARGE of what they are eating.

    I respectfully request that the authors support their illogical and conclusive article title. What evidence do they present that improving diet does not help? How could it not help?

    Martin Matthews

  6. Maryann Dellarocco says:

    I have a 6 yr old autistic son that is now GFCF (since age 2.5). Let me tell you our story. He had words but could not say a novel sentence which means he could lable things but never actually spoke to us. He also has hypotonia and had been in physical therapy since 8 months. He could not climb stairs or into furniture. At 2.5 yrs old I decided to try GFCF, and went cold turkey. Within 3 days he climbed into out kitchen stool, onto our kitchen counter and looked at me and said “I watch mommy make dinner”. The first sentence he had ever said. The next week our speech pathologist came to work with him and immediately asked what had changed because he was visibly different.

    Also, the IAN Project from Kennedy Krieger Instutite, part of Johns Hopkins is reporting that the diets work in at least 1 out of every 5 children. That is 20% of the autism population and they admit it is a conservative estimate.

    As Martin above says, there are thousands of people that KNOW the diet works. I have witnessed it not only with my own son, but with many others. I write my own blog called Matthews Puzzle and I write articles for Generation Rescue also mentioned in Martin’s post ( although I had no idea Martin was posting about this here).

  7. Maryann Dellarocco says:

    May I make two additional points addressing comments and concerns from previous posters?

    Most doctors and nutritionist will suggest that a parent only do one intervention at a time to remove as many variables as possible. This should help to eliminate the fear that we don’t know which intervention is working.

    Also, many parents reintroduce casein or gluten in the form of a challenge, where they keep everything else the same in their child’s protocol and simply add in one previously removed item. We did this ourselves several times with milk and once with gluten. Each time our son regressed and then improved once the offending food was removed again.

    My husband is a software developer and I was a software tester, we were skeptical and conservative. We both understand how to test to make sure you keep variables at a minimum, and we follow this method whenever we change his protocol to determine if something is truly working.

    Lastly, we tried other diets and they did not make significant improvements beyond the progress seen by the GFCf diet. It really has nothing to do with being happy to have something in my control.mwe would gladly give up the extra work necessary to remain GFCF, but our son’s life has improved greatly and we will do everything in our power to help him.

  8. lam says:

    @Martin, there is nothing irresponsible in questioning the claims of GFCF/autism diet adherents and advocates. It is, however, irresponsible to attack those who have legitimate questions about these claims. Among those people are those for whom the GFCF diet has not made any meaningful improvement of spectrum symptoms. It is very clearly true that parents of children on the spectrum face many, many battles in trying to do their best for their children. That does not excuse attempts to silence and bully those who do not share your opinions or experience. By corrupting an otherwise informative and well-written letter with incredulity and intolerance, you do yourself and fellow diet activists a disservice. And also to those on spectrum who are in desperate need of other treatments, other research, and other options; and also, finally, to their parents, who surely could use open and non-combative dialogue with other parents facing similar challenges with their children.

  9. charity glenn says:

    My son who is now 8 has high-functioning autism and adhd. He started the diet last August, while we saw changes at the time we weren’t sure that the diet was giving us the results we were wanting for the money that it costs. While we do most of our shopping at Wal-Mart we were still paying extra for some foods. After one month of the diet my son’s grades dropped dramatically and his behavior at school was about to land him in ISS, somewhere we had not been since the previous school year off the diet. After consulting with his teach and her agreeing in the changes he had shown we decided to put him back on regardless the cost and the issues others had with us putting him on it. Within the first week his grades each went up one grade and his behavior was better, then the second week the same, until week four he was back up to A’s and B’s and no write ups at school. While the diet did not help with his ticks much or his problems with still being in pull-ups, his school life is much more productive and his melt-downs, as we call them, are fewer. I believe in this diet if followed correctly (which is a challenge and may be the cause of the ones it doesn’t work as well with) and if given the proper amount of time (which is up to 6 months).

  10. Audra says:

    I tried the “Autism Diet” it was hard but I was dedicated. My son at the time was not even saying the word “Mom”. I first worked on taking out all dairy, and I heard” Mom”. However, I continued with the gluten and casein free diet and did not see any change. About a month later reinroduced dairy back in the diet and there was absoulty no diarrhea and he continues to progress daily. I do believe there is a logic to the diet with the exception off all….just find what works for you and your child.

  11. Tania Colman says:

    I totally agree with Lam. We all face our own individual challenges with our ASD children. Every one of them is different, therefore they are all going to respond differently to treatment. My daughter did not respond to a GFCF diet even though I had really hoped that she would. I gave it a go even though there was no scientific ‘proof’ that it would work. I think that we try everything that we can for our children in the hope that we can give them a better life. It is wonderful if some children can benefit from an Autism Diet, but the fact that it does not work for all children leaves it open to debate. People should not be labelled as ‘irresponsible’ for asking questions and wanting more evidence.

  12. Maryann Dellarocco says:

    I have to say that as a parent of an autistic child that uses biomedical interventions along with more traditional therapies such as OT and ABA I am offended when articles are written from only a “scientific” perspective. Really, who knows our children better than we do? Not the scientists. The parents. And I have a hard time dealing with the belief that I am not capable of making a smart and informed decision to improve my while. I am seeing more and more mainstream doctors opening their eyes and really looking at the difference diet and other biomedical interventions are making in our kids. I have a hard time when it is implied that I am grasping at straws. Truly I am neither dumb nor feebleminded. I have a graduate degree, as DES my husband. Both of us have very analytical backgrounds. This is our son’s life, we take it very seriously. And this is our family’s income we are using to make these very costly changes to his life. We take this responsibility very seriously and we don’t make simple, light hearted decisions.

    I would love for the writers of this article to contact some biomedical families and see what their experiences have been. How we have actually tested these changes and made informed decisions.

    Have you looked up dr. Fasano? He is a well known GI doctor that has recently published an article suggesting that autism is an undiagnosed form of Celiac’s disease. He is not related to autism in any way, but he has seen how closely autism and celiac’s are, and he thinks that maybe there is another form of CD that they have not discovered a test for.

    Really, this is moving in a very interesting direction. I don’t want you to misunderstand, I don’t think every child will improve with the diet, because I truly believe autism is more than one disease. I liken it to cancer. The treatment for bone cancer is going to be very different from the treatment for brain cancer, or skin cancer, but they are all cancer. And if there was a treatment that was a simple as changing to a healthier diet without pesticides and other toxins that would improve the life of at least 20% of the cancer patients out there, wouldn’t you want to use it? Wouldn’t you want to embrace it? And to help promote it? I would.

    Thanks for your time. Stay well.

  13. ourGFfamily says:

    Spoke to the researcher who did the research study on the GF/CF diet which “proved” the diet didn’t work. She said that the study EXCLUDED children with autism who had gut problems. This would mean that the kids who could have benefited from the diet were not included in the study. Being on a gluten free/casein free diet is not easy. If parents keep there kids on this kind of strict diet, there must be real benefits. We have seen firsthand how this diet is life saving.

  14. Babs says:

    The gf/cf diet works for autism kids with GI issues. It has to do with opioids. Feel free to email me for more info. jabwatchdog@live.com

  15. Cannabis4Autism says:

    Hopefully the world will accept cannabis as the best, safest, and most effective treatment for ASD, before I die?

  16. SFM says:

    Our son, though not ASD, saw great improvement with GFCF diet. He had severe allergies, and problems with focus – also some minor gross/fine motor issues. He has none of these problems anymore (will be GFCF 4 years in July). He no longer has to rely on allergy medication to breathe freely at night.

    After some testing we decided to remove eggs and chicken (that’s very tough) and saw even more improvement.

    My husband dropped his cholesterol 20 points with no other changes to his diet or exercise regime (after going GFCF).

    There’s something to it . . . it’s definitely worth a shot. Yes, it is a pain and very costly. But it’s worth it if you see improvement in your health.

  17. NeEtta Gillespie says:

    There’s another food you should know about called the Aroniaberry. It contains one of the highest level of antioxidants – anthocyanins and proanthocyanidins of any fruit. These powerful berries have been utilized for years because of their overall health and wellness benefits. We’ve had lots of great feedback from families of autistic children and adults.

    Once again Superberries will be attending the AutismOne Conference in Chicago on May 27, 28, and 29 at the Westin Hotel in Lombard, Ill.. Superberries Founder, Kenny Sailors will be receiving a special recognition and will also be at our booth to answer all your questions. To learn more: http://www.superberries.com

  18. Jennifer Bussey says:

    I don’t need science to tell me what I know to be true. Many children who try GFCF also need to be free of other things in order to improve, I and my son both also have to be free of soy, MSG, artificial colors, and nitrates. We have not been tested for celiac, but I strongly feel that we both have it in addition to the autism that we both have. I sort of stumbled upon the whole food thing by accident. I was breastfeeding my second child and she had terrible reflux so her doctor suggested that I remove milk products from my diet to see if it would help her. It did help her, she went from puking 12 times per day to maybe 2 times per day. I also noticed that my life long excema went away and my moods were more stable(no longer crying all the time and getting angry at stupid little things, my husband asked me if I had started taking anti depressants the change was that dramatic), I was sharper mentally and stopped stimming. I decided to remove milk from my son’s diet also because he had the excema, stimming and lack of focus that had been improved in myself with removing milk. He made eye contact for the first time ever and sat still long enough to get through a whole therapy session, his excema went away and the screaming fits improved. I then added soy into our diet after being free of milk for 3 weeks. All the symptoms came raging back in all 3 of us, so soy was off limits. Then I began to research on the internet about the GFCF diet. My son had been chronically constipated and still had a rash on his buttocks that was like blisters(this is a sign of gluten intolerance and celiac disease). He was so much happier and bowel movements became normal for the first time since weaning him onto solids. Then we noticed behavior issues with certain foods like hot dogs, bacon, lunch meat, koolaid, etc and discovered over time what foods bother our son. We occasionally challenge things and now he can tolerate small amounts of artificials and nitrates, but not less than 4 days between exposures. He now has severe diarrhea and blisters from gluten exposure, just like I do. We have been GFCFSF for 7 years and there is no turning back. It is really not nearly as difficult as it used to be and doesn’t have to be expensive and complicated like what is indicated above. It is as simple as the food pyramid, subbing almond, hemp, rice, flax milk instead of milk, gluten free grains(rice, rice pasta, corn tortillas, grits, and gluten free baked goods-homemade or store bought), fruits, veggies and meats, just add in vitamins and ensure adequate consumptions of healthy fats. This isn’t rocket science, just common sense. If these foods make you sick, removing them will positively impact all areas of your life. My son is very much autistic, but he is happy, healthy and learns quickly where as before dietary intervention he was a weapy, sick mess who wouldn’t sit still or interact with others at all and self injured.

  19. Sara says:

    My daughter is on Spectrum Balance Protocol (SPB) by the No Harm Foundation. They have sought answers to the why diet works. When I started my ND therapist gave me a list of questions. When we got to Phase 3 of the diet I had to fill out that form again. I was astonished at how far removed the “On diet” child was from the “Not On Diet” child. it was small gradual steps in each area that made for big changes. SBP takes the GFCF one step further and removes Phytates (found in all seeds) out of the child’s diet.
    There are 3 phases and many children after the diet are able to resume eating normally, while others cannot go back to “normal” but “almost normal”. It was worth 6-12 months of my life to see the changes it wrought in my daughter. People want to know what have I done to her because “O’ my she’s so much better” “Shes normal” Etc.
    It was intensive and hard but the results of seeing her make progress in her schooling and being able to function in society, made the diet worth it. I also know my daughter is one who can’t go all the way back to normal eating. Give her too much grain and she has what I call brain fogginess.
    The indicators for moving to a new food/phase in the SPB diet is always behavior. When we reintroduced white rice back in to her foods, we saw huge digressions, but adding sugar did nothing…
    I’m happy to say on a modified Phase 3 maintenance SBP diet, she is finally dry at night (most of the time), no melt downs! except when she gets something we know triggers them. She confides in us, enjoys spending time with others instead of desiring to be always alone. She has made friends and is keeping them. Sensory issues, skin, oral, auditory are hugely better, and she can talk about what is bothering her instead of just freaking. Her behavior is much closer to her real age. She’s able to do school work at her age lvl for most subjects.
    All this for nothing, BUT my valuable time and energy. (Phase 1 is a huge amount of work!) I often wonder if the pharmaceutical community seeing they cannot make money on a set of instructions on how to eat, ignores this avenue because there is no profit. Seriously speaking many days I wish I could just give her a pill for her problems. It appears less exhausting to me as a parent, but in the long run I’m happier knowing some parts are actually healed (She can eat casein again!) than “just treated.”

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