Friday, February 5, 2010

Of Stories, Questions, and Mistrust

Some time ago I published a piece about the new statistics that show that 1 in every 110 children in the United States is on the autism spectrum. Within the week two different people suggested that we should try the Gluten Free Casein Free (GFCF) diet for our daughter. While I respect people who have made that choice for their child's treatment plan, it has never seemed to fit our particular situation. Nonetheless I decided for the purposes of writing this blog I should perhaps do more research into that approach. I am just at the beginnings of my investigations, but it seems I am looking into this just as the controversy has reached a new peak.

Late last week (Jan 28) a British medical board chastened Dr. Andrew Wakefield who initially published a study finding a link between the Measles Mumps Rubella (MMR) vaccine and the occurrence of autism. The board found a variety of ethical problems with his study. The vaccine is generally given around 18 months of age when some forms of regressive autism appear. This form of autism is particularly devastating because the child has often been completely on track developmentally - walking, talking, socializing, and then these skills diminish and the parent feels they have "lost their child" to the disorder. I cannot imagine how heart-breaking this experience must be. In our own story we can see symptoms of sensory processing problems and motor skill issues back to newborn days. It seems to be the way our child was wired from the beginning, which doesn't make the symptoms any easier to handle, but we have never known her to be any other way. People who suspect that the MMR vaccine (or others) are a cause of autism are often proponents of the GFCF diet as well as other biomedical interventions (supplements, detoxification treatments, hyperbaric oxygen, etc.) Generally they also see clear signs of intestinal distress in their children - irregular bowel movements, yeast infections, abdominal pain, internal bleeding, etc. We have seen none of these for our daughter, which is the main reason we have not pursued any special diets.

Later in the week (Feb. 2) the scientific journal, Lancet, which originally published Dr. Wakefield's study, retracted the article because of the review panel's findings. You can read the explanation for their retraction here. The bottom line is that the British review board and the Lancet are calling into question the causal link between the MMR vaccine and autism.

That will not be the end of the story. I've already seen comments on other blogs from individuals who are convinced there is a link. They see ethical problems on the other side of the issue, claiming that investors or relatives of investors in the vaccine industry are sponsoring all of the studies that seem to show that vaccines are safe. They view Dr. Wakefield as a martyr of the vaccine machine. "But wait," replies the vaccines-are-safe-crowd, "Dr. Wakefield was invested in a single Measles vaccine and his study supported the use of single vaccines instead of the triple shot, so his study is unethical in that regard, too." Then there are the lawyers for both sides who stand to profit no matter who is right...

I don't honestly know what to make of all of it, which is why I'm reading more. For us the MMR/immuno-neurological storyline doesn't seem to explain our daughter's autism. I do believe that for the vast majority of children vaccines are safe. After discussing vaccine concerns with our pediatrician we proceeded to vaccinate our twins, albeit on a slower schedule and being sure to avoid vaccinating if they were recovering from an illness. I go back to wondering if what we currently call "autism spectrum disorders" aren't really several different disorders that manifest in similar symptoms but have different root causes. There is no other way my logic can explain such different storylines from parents who in the end just want answers, and help for our kids.

Sadly when the answers come I'm not sure we'll recognize or trust them because the community seems so deeply divided over this issue. It reminds me of political or "religious" debates because neither side trusts the other sides' sources, and everyone spends more time defending their point of view than digging down to the crux of the matter. I think we need a wake up call in that regard. Remember the statistic that started this journey for me in the first place? 1 in 110. Our school systems are overwhelmed, our social services are stretched thin, parents who try to meet the gaps the schools and social supports can't cover are fraying at the edges, and the children are falling through the cracks. We can and must do better than this...for our kids.


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