Tuesday, March 23, 2010

Reading Labels

I have been reading food labels since my husband became a vegan eight years ago.  When my oldest son was diagnosed with milk/soy protein intolerance as a baby, my reading took on a new vigilance, examining each word on every baby food product. I knew every ingredient indicating the presence of foods they couldn’t eat.  But the one label I wasn’t prepared to read was the one given to our middle child – Autism Spectrum Disorder.
We had known for a while that something was a little different about him but we couldn’t put our finger on what it was.  Finally at age 3 ½ our developmental pediatrician told us what we had guessed – that our son was on the autism spectrum.  The CDC estimates that 1 in 110 children have ASD, and even though he didn’t have the classic signs we weren’t surprised by the diagnosis.  It was actually a relief.  We had tried to get him help, but without the autism “label”, the right services weren’t available.  Now many accommodations were accessible at home and at school that weren’t before.

Following his diagnosis, I shared this relief with family, friends and the autism community through an essay on the Autism Speaks website (http://blog.autismspeaks.org/2010/01/22/in-their-own-words-welcome-to-the-community/).  Using my son’s name and story I illustrated how amazed I was to be so welcomed into a family of people struggling with our same issues. I didn’t think how my need to share was potentially “labeling” my son for life on the internet.  I didn’t stop to explain to family and friends what autism spectrum disorder meant for our son.

I agonized over what I had done – “outing” my son as autistic without his consent or concern for his privacy. But I realized that regardless of the stigma associated with autism, this is who my son is and will always be. Without that label, he could have spent years struggling with the most basic life and educational skills.  As parents our job is to help our son understand what his diagnosis means, and how it makes him special in so many ways.  And as my son’s mother, it’s my responsibility to help others get past their lack of knowledge, read his label, and see him for the remarkable little boy that he is.
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