Thursday, October 13, 2011

Between a Rock and a Hard Place

I have spent the last few weeks entrenched in my newest research project (research is kind of a hobby of mine) – to find more ways to help my kids be successful, not overlooking anything I might have been reluctant about. This was inspired by conversations with one of my sisters and information she shared with me, for my own perusal, nothing more. My sister is a vegetarian, and has made many diet and lifestyle changes for health reasons. She recently began cutting out foods that contain sugar, or ingredients that can become sugars or yeast in the gut. I had never heard of such a diet, but I have heard of other dietary interventions for a variety of issues, some that she and I share. She also wanted me to read the research behind the diet, as it was shown to help with Autism.

After looking through some of the links and articles, it occurred to me that diet and nutrition might be a puzzle piece I was missing, considering that Liam is not growing well, eating hardly anything, and sleeping very poorly. I’m well aware of how diet affects physical and mental functioning, if only from personal experience. So I cross-linked to other sites, searched out books at the library, and hunkered down (in the precious little time I have to myself each day) to gather information.

I am a skeptic at heart. I need to read or see the science behind things. I usually scoff at anything that has no proof, or at least nothing tangible to back it up. So this is the purpose of my research. What I have found however, is way more than I expected, and almost shocking that I haven’t heard of much of it before. There’s been tons of research done in the last 15 years that supports dietary interventions and nutrition assessments for children with Autism Spectrum Disorders. It makes sense too, that if diet and nutrition are so important for normal growth and physical and mental functioning, this should be a crucial piece for treating children with ASDs. These children (mine for example, but there are hundreds of thousands more) regularly have problems with cognitive functions and communication, GI issues, feeding difficulties, sensory processing problems, and fine and gross motor issues. So why isn’t this addressed by our pediatricians?

Well, Judy Converse, MPH, RD, LD explains it quite well in her book “Special-Needs Kids Eat Right.” (2009, Penguin Group, New York) It’s a combination of history, holes, and controversy.
  • History: Unfortunately, some remnants remain of the now defunct theory that Autism is caused by cold, unloving mothers. It was a terrible idea to begin with, but we are still having trouble ridding the world of this.
  • Holes: Most doctors don’t receive any training in nutrition during their education. Why? Because of specialization. The medical field now has specialists for every system in the body, but all separately. There is no whole body practice. And, pharmaceutical companies are great marketers, so doctors are encouraged to push prescriptions, and treat symptoms, instead of getting to the root of the problem. I have this complaint all the time, that doctors don’t treat patients, they treat symptoms.
  • Controversy: Finally, there’s the sacred cow of vaccines. Most don’t know the whole story, or the science that got misconstrued, so the safety of vaccines is still in hot debate. But the truth is, vaccines are safe (in my opinion), except for a subset of children who may be predisposed to react to a clustered viral exposure. I don’t feel my children were adversely affected by vaccines, but there are children out there who were.
So all this means that traditional doctors are reluctant to venture into treatments that aren’t mainstream, especially in fields of knowledge they are unfamiliar with, like nutrition (that is usually the domain of licensed dietitians and nutritionists).

On Tuesday, at the boys’ physicals, I too found this out the hard way. But I was prepared with the above knowledge, and knew which questions to ask. The pediatrician, as expected, was reluctant to offer any information about dietary interventions or the like. But she recognized my concerns about Liam’s poor growth and nutrition, and referred me to a nutrition clinic that also has a GI department. AND it’s covered by our insurance!

I do feel kind of stuck though, between the immovable rock of traditional medicine, and the hard place of going to the other extreme, territory I’m uncomfortable with unless I can read the science. It’s a tough place to be when I just want my kids to be healthy, and be the best they can be, whatever that turns out to be. This is a place many parents of ASD kids before me have been, and more after will be. But I hope it will be easier for them as time goes on.

Here’s hoping for progress and open minds.
- Adrienne

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