Tuesday, June 10, 2008

Autism better defined

When my son and I are out and about, I often find myself discussing the definition of autism. Sadly, many people are still in the dark about what it means to be autistic. I came across a very good article a while back ago that offers a good explanation about this disorder. The article, entitled: "Autism: The Evolution of a Disease," was written by Bryan Jepson, MD, and was presented at the National Autism Association conference (the article doesn't say what year the conference took place, but I'm sure it wasn't too many years ago). Dr. Jepson (if I am correct) is a member of Thoughtful House, a research facility in Utah that specializes in getting to the bottom of autism. They have a website called: thoughtfulhouse.org.

Dr. Jepson defines autism as such: "Autism is a complex metabolic disorder involving multiple organ systems, primarily the toxicological, immunological, gastrointestinal, and neurological systems." Further down, he explains: "Autistic children are predisposed to environmental toxicity because of underlying metabolic abnormalitites." My own son's issues echo this definition. His first two years of life, he was pale, would alternate between episodes of sleeping soundly and waking up in the middle of the night, he always craved grain and dairy products, had chronic bouts with diarrhea that would leave lesions on his little bottom.

Earlier this year, his pediatrician and I agreed to have him undergo various diagnostic testing to see if we could determine the root cause of his symptoms. So far, since his diagnosis, he's dealt with a child psychologist, pathologist, geneticist, neurologist, as well as 2 MRIs, an EEG, and a lumbar puncture. Next month, he gets to see a developmentalist. While this may seem extreme to some people, keep in mind that autism continues to hold many questions. In order for parents to better help their children, they need to know what they are dealing with. The only way to find out that information is to have the testing done. There is no cure for autism, but it can be managed. The challenge lies within the varying degrees of autism that exist and the fact that every child is affected differently. Autism is almost like a fingerprint-- no two are exactly alike.

To my surprise, a genetics test revealed some interesting results. There is now the question of mitochondrial dysfunction (MtD), as well as possible liver dysfunction. The measurements of the chemicals in his body, when viewed collectively, showed other potential issues. We know that he responds to a gluten-free and dairy-free diet, so there is an obvious link to the metabolic system, he has significant cognitive and communicative delays which tie into the neurological system, his diarrhea was brought under control upon putting him on a special diet, which would tie into the gastrointestinal system. Also, he's no longer pale; since he's been on this diet, his skin tone is rosier and if we continue to live in Texas, my boy will wind up with tanned skin, as opposed to pale skin. His sleeping habits continue to be a problem, but I'm hoping that it's just a phase. He's slowly becoming a more typical boy, but he still has a lot of challenges ahead of him.

Many people seem to associate autism with the film, "Rainman," but it is much more than that. "Rainman" depicts classic autism, but the disorder has so many levels of severity. I'm blessed that my son's autism is high-functioning, I've worked with other autistic kids who will likely never speak or be able to associate well with others and require constant care and therapy for the rest of their lives. There is so much more to this subject, that I could spend all day typing about it, so I'll stop here. However, if anyone reading this passage has further questions, I'm more than happy to offer more information. The only way for people to better understand this epidemic is for us to openly discuss it.

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