CCPR: Do you think that would explain the various reports of people having seemingly miraculous differences?
Dr. Elder: Yes I think so. It’s possible that we just haven’t done a good job of identifying that subset. For example, these children may have allergies to certain food or they may have unusual GI problems. I quite often hear anecdotal reports from parents who say what unusual bowel movements their children have. Sometimes it almost sounds like an irritable bowel syndrome where it goes from constipation to diarrhea and back again. And I have even considered doing a follow-up trial with a diet where we only include children who have these kinds of reports and see if that would help us to narrow it down.
CCPR: So as clinicians, how should we approach the question of diet with our families?
Dr. Elder: I wrote an overview article about a mother that I met at a conference. I asked her about the gluten-free, casein-free diet and she said that she put her child on it. And I said, “Well we don’t have the empirical evidence to prove that works.” And she said, “You know I am a very well-educated woman, I am a very good consumer, and I am very well read, but if I wait for science, my child will be grown. If there is something I can do that can possibly help my child that is not going to be dangerous or risky and I can afford it, I am going do it.” And you know I can’t much argue with that.
CCPR: So there’s no reason to discourage a parent from trying the diet, even in the absence of scientific evidence.
Dr. Elder: I think what we have to do as clinicians is make sure that whoever we are talking to is well informed. It is very common for parents to come with a lot of information, but I always go back to: what sites did you get it from? Who are you quoting? I often refer people to Autism Speaks because I think they do a very good job filtering out a lot of information that is just not credible and only reference what is credible. And then if, for instance, they are interested in implementing the diet, I will ask them: Have you thought about what is going to be involved? Have you thought about your child being maintained on the diet and nothing else? If you’ve got other children in your home, have you thought about locking cabinets and the refrigerator? Do you have somebody who can keep records? Have you thought about the cost in getting the food? And then they need to make sure that if they do it, that they do it long enough. One criticism of our study was that it didn’t show results because we didn’t do it long enough. So I recommend that families do a trial of at least three months.
CCPR: And what about outcome measures? How do they know whether it worked, especially in view of the placebo effect?
Dr. Elder: Parents can do assessments such as the CARS, but I would encourage them to partner up with an objective person: a professional who can assess the children behaviorally.
Because we don’t have a cure for autism, people are desperate to try to find something that works.
~ Jennifer Harrison Elder, PhD
CCPR: Any final thoughts, Dr. Elder?
Dr. Elder: I would just like to say that I think any good clinician should listen to parents because parents live with the child 24/7. We have an obligation not only to listen to them, but to help them make informed decisions about treatments, because there are always more that are being developed. The lag time between when these treatments become popular and when we actually have the science to back them up or to refute them is something that must also be taken into account. I call it a feedback loop. It is very important to shorten that by listening to parents. Also, we as researchers need to be researching what is important to them and get that information back to them as quickly as we can.
CCPR: Thank you very much, Dr. Elder.