When I tell some people in the autism community that my son, Alphonse, did not respond to the Gluten-free/ Casein-free diet (GFCF), they often counter by telling me about its success rate, citing the kids who got “cured” because of it. Maybe I am not doing it right? Or maybe I am not doing enough?
Enough, I say. Enough of people telling me that it didn’t work because I didn’t do it right. Enough of anyone’s insistence that their way is the ONLY right way.
I am all for a healthy, natural diet; everyone needs it. Alphonse, to this day, is still on the GFCF diet ( we started when he was six), even if we have not witnessed any of the marvelous “recoveries” we have heard about from others. Because it is relatively easy and inexpensive to implement the diet in Philippine setting (our staple is rice and not wheat and Alphonse was never a milk drinker), we have stuck with the rules of the diet for years. Moreover, as we watch out for adverse effects of his medications- diabetes being one of them- we have also put restrictions on carbohydrates and sugar on his diet. Aside from the diet, Alphonse also has supplementation with SuperNuThera, buffered Vitamin C. fish oil, and probiotics. Truth is, I do not see anything nutritionally wrong with the diet and provided you can find replacements for your child’s food preferences, changing diets should be the least of your worries in autism. As if we didn’t already have enough of those, thank you.
On principle, I support biomedical treatments as part of a wholistic and reasonable approach to autism. I insist on “reasonable” as a measure as I balk at anything that is intrusive, untested, and unproven. I will listen to opinions, be they professional or otherwise, but I will not be imposed upon. So, please, stop telling me that your way is the ONLY way to treat autism. I’ve had quite enough.
ANC Headstart with Ms. Karen Davila featured a DAN doctor, Dr. Eileen Comia, and a mother of two sons with autism, Ms. Rachel Arguelles, in one of its recent episodes. (I know Ms. Arguelles; I buy Alphonse’s supplements from her as she is the certified distributor of Kirkman Labs in the country.) I caught the last part of the show on live television; I have since watched the entire episode on youtube.
I agree with some things Dr. Comia said, particularly on the point that the diet can be a jumping point in making an autism intervention profile for your child. I also agree that testing for underlying causes is necessary. No mention, however, was made of expense, of giving parents an honest and realistic view of what it entails to go through the biomedical route, and when finally asked (at 8:42 of Part 2 of the show on youtube), the doctor did not provide a direct answer to the question. Most of all, I worry about the insistence on a “cure” and the “promise” the show leaves, that with the diet and biomedicine, your child’s autism will go away.
Lest parents are left with the impression that biomedicine is not in the country yet, allow me to answer some questions:
Is biomedicine available in the country? In the sense that people know about it now, it is. There are also some centers (two, as far as I know) in the country that facilitate biomedical interventions.(But testing may not all be done in the country; specialty laboratories abroad will be needed to process samples.)
Is it widely known? I think it now is, especially with the efforts of volunteer parents at Autism Pinoy, of which I am a member.
Do we have a DAN-certified doctor living in the country? Yes, we do. Dr. Girlmar Leones, a graduate of the University of the Philippines College of Medicine, trained under Dr. Elizabeth Mumper at the Rimland Center in Virginia. She is also a practicing pediatrician.
Should parents consider the biomedical approach to autism? I think it should be an option open to all children with autism. At the same time, I remind parents to consider it a part of a total, well-planned approach that includes educational intervention, behavior modification, and skills building.
Will biomedicine make my child “normal? and not autistic? My son is severely autistic and even now, at 16, he still is in the severe end of the spectrum. All children are different, however, and what did not work for some may still work for others. I encourage parents to give it a try, yet always keep an open mind. There is no one single “cure” for autism because there is no one single cause.
Is it expensive? The diet is not (unless you go for imported food items, many of the meals our children love can be replicated at home, with less expense). All others are expensive. Supplements are. Tests are. Doctor’s appointments- the one-on-one kind with the most sought-after DAN clinicians- are. One of the most controversial threads in the old Autism Pinoy forum was the cost of seeing a DAN doctor, some of whom charge USD400/consultation (even higher in some cases).
Below are two articles, one about DAN (Defeat Autism Now), which Ms. Davila touched on in ANC Headstart, and the other is from today’s WebMD. Both are interesting reads. I hope that other parents with concerns like mine learn a little more about autism from these.