This blog is a natural product of my two “lives.” First, I am a mother of four children, including a boy (my oldest) who was diagnosed with an autism spectrum disorder (ASD) when he was 2 ½ years old. Second, I am a trained scientist with a doctoral degree in physiology who first entered the workforce as a clinical trial manager in the pharmaceutical industry and later launched a career as a freelance medical and regulatory writer (my current profession).
That is the short version. For the long version, keep reading…
My journey started in 2005, when my oldest boy was diagnosed with autism. At that time, the few recommendations for treatment were behavioral or educational interventions. For several years, I accepted these evidence-based therapies as the only options to help my son navigate and succeed in this world. Growing up with a father and other family members who were physicians, I was raised with the utmost respect and trust for conventional medicine as it is practiced in the United States. However, these recommendations (or lack thereof) didn’t seem to be working for my son. At age 5 years, my son survived on only two soft foods: peanut butter and yogurt (1 brand!). Along with his “autism”, he had gastrointestinal (GI) problems, including failure to thrive, and was frequently ill. Were these conditions related?
A turning point for my son was learning to chew solid food just prior to his 6th birthday. Despite this breakthrough, however, his growth and weight gain remained unchanged (along with continued GI problems) as he continued to eat a large quantity of commercial yogurt and 2 to 3 “nutritious” cow’s milk-based shakes a day (at the recommendation of the pediatric hospital nutritionist). My son didn’t appear to benefit from this “healthy” diet. It was time for me to start acting like a scientist. After reading a few papers by H. Jyonouchi, I removed all cow’s milk-based products from my son’s diet. The results were amazing; my son experienced weight gain, growth, and improved bowel function within the first month. A bonus was that my son just seemed more “with it.” It was clear to me that my son’s autism was not just neurological. It was time to dig deeper…
At age 10 years, my son is thriving. He is in a mainstream classroom at a public school with limited support from an aide; has a few good friends; is actively involved with swimming and running teams; and, importantly, enjoys good health! Despite these improvements, my son has an ongoing tic disorder that waxes and wanes, and he has delays in higher-order social and academic problems. But, overall, his “autism” improved when his overall health improved. All of this was achieved by cleaning up his diet and supplementing some of his deficiencies (including zinc and vitamin D). I still wonder why these laboratory tests aren’t routinely ordered for individuals with ASD, particularly those with abnormal eating habits and a history like my son. The investment in these tests at an early stage would have saved us money, time, and anguish.
I am at a crossroads with respect to my son’s care. My son needs a level of care in between the “standard” well visit care endorsed by the American Academy of Pediatrics and the alternative recommendations, including chelation, recommended by his “biomedical” physician. Although I don’t deny that we are exposed to a greater number of toxins, I don’t believe heavy metal toxicity is the sole or root cause of my son’s medical problems or autism. Good evidence in the literature suggests that at least some individuals being diagnosed with autism have significant immunological abnormalities (see reviews by P Ashwood and J Van De Water). My family history is plagued with autoimmune disorders and I certainly think this may have contributed to my son’s development of an autism spectrum disorder.
So, I’m back to my son’s primary pediatrician, who has excellent credentials and is willing to work with me. The biomedical literature is literally exploding with papers detailing the medical abnormalities observed in individuals diagnosed with ASD (just visit the US National Center for Biotechnology Information’s PubMed database: http://www.ncbi.nlm.nih.gov/pubmed). Similarly, the ClinicalTrials.gov database, a searchable registry of clinical trials supported by the United States National Institutes of Health (NIH), lists an extensive number of clinical trials examining causes and interventions for the treatment of ASDs (354 studies as of the time of this writing, 1 November 2012). My son doesn’t have time to wait until some of these interventions are validated and approved. This will take years and years. With careful consideration of his unique medical history, I think one or more of these trials may offer him continued benefit.
Therefore, the purpose of this blog is to create a site to share information about some of these promising interventions for individuals diagnosed with ASD, the clinical studies investigating them, and the literature supporting their concept. I hope that interested persons can use my blog to dialogue about their experiences with these investigational interventions. Most of all, I hope for a bright future for my son and other individuals who share his medical challenges.