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.
DAN! (Defeat Autism Now) Is No More
By Lisa Jo Rudy, About.com Guide
Apparently I’m very late to the party on this big change, which was announced in January, but it appears that the Autism Research Institute will no longer promote an autism treatment called DAN! (Defeat Autism Now). In addition, ARI will no longer host the DAN! registry of practitioners. Dr. Edelson of ARI kindly pointed me to this information on the ARI site’s newletter:
Because the name “Defeat Autism Now!” does not accurately describe the medical approach to understanding and treating autism, and because some people have been offended by the phrase, ARI will no longer use the name. (As one person with ASD wrote, the name feels like a “personal affront, that I am not good enough as a human being, and that, because we are not neurotypical, people with autism need to be defeated.”) Furthermore, the Divers’ Alert Network owns the copyright for “DAN!,” and they have requested that we no longer use it. In the future, our biannual Conferences will simply be called ARI Conferences….
We have resolved to “freeze” the clinician registry in 2011; at the end of the year, the list will be removed from our website. There are many reasons why we have chosen to do this: although clinicians receive similar and consistent information at the seminars, there is no uniform way patients are subsequently treated, even acknowledging individual differences; many perceive the clinician list as a list of recommended doctors–in reality, the list simply contains the names of professionals who attended our clinician seminars. We do not certify them, and as a result, we cannot assure people that every practitioner on the list always provides the highest quality service. We do know that families need a way to locate quality practitioners in their community, and we have added a page of advice on that process to our website.
I will be updating my articles on DAN! to reflect these changes; meanwhile, however, you can read about the approach as it was – though, presumably, there will be signficant changes to come. The newsletter suggests, for example, that ARI will be focusing more attention on nutrition, sensory issues, and the needs of adults with autism.
By Kathleen Doheny
WebMD Health News
Sept. 28, 2011 (San Diego) — Up to half of children with autism are placed on special diets by their parents to improve symptoms, despite conflicting evidence that they work.
Now, a small new study of the popular gluten-free/casein-free diet, or GFCF diet, suggests it does not work, says Patricia Stewart, RD, PhD, of the University of Rochester. She presented the findings here at the American Dietetic Association’s Food Conference Expo in San Diego.
Stewart enrolled 22 children, ages 30 to 54 months, to go on the GFCF diet. The research was funded by the National Institute of Mental Health under the STAART (Studies to Advance Autism Research and Treatment) Network.
Only 14 children were able to maintain the strict diet for the four-week minimum required for the study. It requires that all foods containing gluten and casein be removed from the diet. Gluten is a protein found in foods made from wheat, barley, and rye. Casein is a protein found in milk.
Six weeks after the study began, Stewart started the food challenges with the children. These included portions of wheat flour, milk, both, or placebo. She and others observed their behaviors. They found:
- No effect on sleep
- No difference in stool frequency or consistency
- No difference in ratings of attention or activity by parents, teachers, or researchers
- No noticeable differences in social interactions, language, or movement behaviors
“Nevertheless, parents will continue to try many of these diets based on what is out there [about them working],” says Stewart, director of the Clinical Research Center at the University of Rochester School of Medicine.
And despite conflicting evidence that special diets for autism work, she says, parents who decide to try it deserve the support of their health care providers. Few of the diets have been tested thoroughly and scientifically.
Study of Nutrients in Children With Autism
Researchers also found that children with autism lack some important nutrients but have sufficient intakes of others whether they are on or off a special diet.
Children with autism often eat only a few, favorite foods, or are otherwise picky about what they eat. Experts worry about their nutritional status.
So in another new study, Stewart analyzed the food records of 252 children with autism, hoping to find out if their nutritional status is inadequate.
Although she has yet to complete the analysis of all the children, so far she found children with autism lack some nutrients but not others.
They are similar to other children, she says, in that they don’t get enough potassium, fiber, vitamin D, vitamin E, or calcium. Like other children, they get too much sodium.
More children with ASD got enough vitamin K and E compared to general population.
While many parents give supplements to their children with autism automatically, she suggests health care providers should be asked about it. They should evaluate whether the children need extra supplements or if they get enough nutrients from diet.
In a third study presented at the meeting, Kent State University researchers evaluated the nutritional status of children with autism while on a GFCF diet. They looked at the diets of 31 children, ages 6 to 11. Some were on a GFCF and some ate a regular diet. They looked at three-day food records. Those on GFCF diets had lower intakes of vitamins B1, B2, B12, and D, calcium, phosphorus, and selenium than those on the regular diet.
There may be a subgroup of children with autism spectrum disorder who do better with dietary intervention, says Timothy Buie, MD, an associate in pediatrics at the Massachusetts General Hospital, who also spoke at the meeting. He often sees children with autism who have gastrointestinal (GI) problems, such as acid reflux, in which stomach contents travel back up the esophagus.
Buie showed videos of three children with autism. They had repetitive behaviors such as repeated flailing. After evaluation, he found all three had acid reflux. But none had clear symptoms of a GI problem, he says.
”Kids with autism who present with GI issues warrant a through evaluation,” he says. “But I think it’s not happening.” As Stewart said, parents should involve health care providers to address such issues.
Parents who suspect a GI problem with their child with autism should ask for the last appointment of the day, he says, or the last appointment before lunch. That will help ensure enough time is given, Buie says.
Buie reports project support on a diet study from Nutricia Advanced Medical Nutrition, project support from Autism Speaks and previous support from Newman’s Own Foundation.
These studies were presented at a medical conference. The findings should be considered preliminary as they have not yet undergone the “peer review” process, in which outside experts scrutinize the data prior to publication in a medical journal.