Tuesday, August 21, 2012

House Rules

House Rules by Jodi Picoult provides an interesting description of living with someone on the autism spectrum (ASD). One must be careful, however, to not assume all children or families are like the one depicted in the book. The author researched people on the spectrum and has some poignant descriptions of life from the perspectives of the various characters. I liked the way the author took the voice of the brother. On page 467 there is a beautiful description of the challenge of being the "big brother" when you are not. For siblings dealing with ASD in their family, Theo's voice trail through the book, shows the good and the bad of how one kid handles the role.

My first concern with the story is the emphasis on both the cause as vaccines and the treatment by diet and supplement. Numerous studies have revealed no link between vaccines and autism. While many children are first identified as "different" around the time when their children received their first MMR shots, this is also the time when a massive brain pruning occurs and developmental challenges change. These two events seem far more likely to be the culprit in the "onset" of recognizable symptoms. Looking back, I know that when my 9 month old son could sit in my lap and be read to for 45 minutes at a time, not trying to squirm away or eat the book, it was a sign of things to come. Early gaze studies show that many infants later diagnosed with ASD did not look at eyes, but rather mouths of caregivers in their first months of life. This indicates a far earlier age of "onset" than previously identified.  Do I believe that there are some children with impaired immune systems who react poorly to vaccines? Yes. It is, however, a subset. Similarly the research has said that special diets do not help. Do I believe that for some small subset of children diets do help? Yes. The author's characterization as these concerns as the cause and best treatment, however, are not based in science, but in the hopes and dreams of parents and limited case studies.

Now I will get off my soap box.

The other area I find fault with the ASD characterization by the author, is a lack of empathy. I think that people on the spectrum do experience some empathy, but it is different from how neurotypicals do. They may struggle with identifying the situation deserving empathy, may not have the words or concepts in their bag of skills for understanding the situation or showing concern, or may be able to compartmentalize emotions in a way foreign to us. On occasion they can exhibit empathy in a way that we clearly identify as appropriate. Depending on the individual, the ability to be empathic is highly variable and may be situation dependent. After all, on your worst day, you might have trouble showing compassion for someone who broke a nail. It is trivial. On a great day for you, a compassionate response is likely. I suspect that empathy for the individual on the spectrum is often like that, sometimes overwhelmed by internal stimulation.

Reading this book will provide insight to ASD, but the important thing to remember is, "If you know one child with autism, you know ONE child with autism." Each person is unique with strengths, weakness and characteristics that are different. Lumping them all together is a disservice.

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