Gluten/Casein Free Diet and Autism

Miss Jess,

I’m the mother of a child with Autism.  My pediatrician recommended I put my son on the Gluten/Casein-Free diet.  I’m not the kind of person that makes giant changes without doing my homework, especially when it comes to my little guy.  Where does Behavior Analysis stand on this whole G/C-free business?

Hungry in Helena, MT

Dear Hungry,

The Gluten/Casein Free (GFCF) diet is a hotly debated topic in the field of ABA.  Many practitioners and parents feel that there is some merit to the diet, as they have seen changes in behavior once the child has been placed on it.  However, others have reported just as many cases where upon implementation the diet, no changes whatsoever in his/her behavior were seen.  So, what's a parent to do?  Well, they should do what you're doing-which is their own independent search into the topic. Let me give you some things to think about.  

First, let me point out that there are no definitive studies on the subject out there.  As of right now, we only have anecdotal reports and a handful of studies with a lot of confounding variables in them to base our decisions on.  These are not great sources-as they are often biased by a parents love for their child, and the strong desire to have Autism gone from their life as soon as possible.  With regards to the published studies, some may be funded by parties with a special interest-thus biasing the outcome of the study.  Or, the studies use small sample sizes-for example, one-five children.  Results from studies like this cannot be trusted as the sample size is too small to offer any generalizability.  

Second, the Gluten Free/Casein Free diet is not cheap, and it's not all that easy to implement.  For you to do it correctly, you have to be sure that the foods you are giving your child to eat contain NO traces of gluten or casein.  That includes checking out the ingredients of all food sources-not just eliminating bread and milk products.  Stores like Whole Foods and  Gluten-Free Trading Company  sell these products, but at a price. It is also important to note that not everyone has a Whole Foods or similar store near them, so shopping at one may not be a possibility.  

What ABA needs is for researchers to perform an in-depth series of studies on the GFCF diet.  Specifically, we need to look at specific behaviors that are common in a variety of children with autism before administering the diet, and after implementation.  Also, these behaviors need to be monitored over several weeks and months, preferably years (though that may be difficult to achieve with a large sample size), in the absence of ANY other form of therapy.  This is where the problem lies.  We know from previous research that the best time to make the most headway with the treatment of autism is during the early years-the earlier the better.  To spend that precious time on a therapy that is not proven to be effective is, in my opinion, ludicrous. 

So, if you want to try the diet what should you do?  Well, the rule of thumb that I use (as do many of my colleagues):  If you must try the diet, do so for only 6 months.  If you are going to see any behavioral changes in your child, they will occur within 6 months of placing your child on the diet.  If you see no changes in behavior during this time, it is safe to say that the diet is going to be ineffectual for you, and you should discontinue it as soon as possible.  Also, if you are working with a behavior analyst, please notify him or her of your decision to test the diet.  He or she can work with you to help determine the efficacy of the diet, as well as monitor any changes in behavior with hard, non-biased data.  Also, by notifying your therapist of your decision, he or she can account for any abnormalities in behavior that may occur during the time the diet is being tested. Should you happen to see changes  in your child after placing him or her on the diet, you will need to re-evaluate whether or not to continue it after 6 months.  What you may want to do is consider taking your child off the diet for a period of time (say, 2-4 weeks), and then re-start the diet after this time.  Be sure to continue taking data on the targeted behaviors during times off the diet, as well as when you re-implement the diet.  This will help you get a better sense of whether it was the diet that created those changes, or if it was another factor that caused those changes.  

Comments

[Janet F.]

FINALLY! Something that makes sense! Thank you so so so so much for writing this. I am so tired of gibberish I can't understand -- this really helps!!!

[ADHD Therapy]

I've being researching about Autism and reading your blog, I found your post very helpful :) . I thought I would leave my first comment. I don't know what to say except that I have enjoyed reading. Nice blog!