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.


  1. I label you awesome mom. :)

  2. Hello Alysia, before my son got an official label from a professional, he and I received many labels from nonprofessionals. My son's were: brat, spoiled, undisciplined, attention seeker, wild, rude, etc. My parenting skills and I were labeled: bad, lazy, ignorant, excuse maker, etc. It was only after we got the label from a professional that I instantly over night was transformed in the eyes of others to: dedicated, selfless, amazing, educated, determined, etc. I am the same mom protecting and fighting for my child, nothing has changed. My son didn't instantly become aspie the day he got the diagnosis, he was born with it. But there was no understanding or compassion from others till the label. This is something that still boggles my mind. We haven't changed with the label, but the label changed the perspective of others.

    My son knows that he is on the spectrum, he knows what an advantage it is for him with retaining information, and understanding complex things he is interested in. He also knows that it challenges him socially and sensory wise, making him have to work extra hard in those areas, where he has to exert no effort in others. These traits make him exactly like every other human being on the planet...someone born with great strengths as well as great weaknesses. We are all in the same boat, his strengths and weaknesses just happen to have an official name and are in the DSM.

    A family member just spent time with him after not seeing him for a year. She shared that a year ago she thought there was no future for my son. He would end up having to be taken care of for the rest of his life. Now, a year later and a year of dedicated therapist, her view of his future is completely different. She now sees him as being successful and accomplishing what every he sets out to do. I always knew his future had the possibility of being what ever he wanted it to be. But sadly others, although they had more compassion once he got a label, they thought he would be limited to an empty life with out the ability to accomplish anything. My son was looked on with pity. Thank you Alysia for your commitment to raising awareness and educating people to how amazing our children are!

  3. You are so fortunate to have found a diagnosis! Seems like that's half the battle. Thanks for sharing your story.

    Sandy Avila
    Director of Operations
    Prepped & Polished
    Tutoring, College Counseling, Test Prep