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October 2011



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Eileen Bailey

Months ago, when I first began writing for this site, I did so because my grandson has autism. He was diagnosed around the age of two and is now five. He began receiving early intervention services and his progress was amazing. He began saying some words, could communicate his needs, let you know when he was upset and could interact with his aunts, uncles, grandparents, smiling and laughing. Working on this site, researching and talking to parents and professionals about autism seemed like a good way for me to better understand my grandson.


Then, a few months ago, I was contracted with Penguin books to write a book for parents on Asperger’s syndrome (AS). I started reading as much as I could. I talked to my neighbor, who has twins with autism and to various parents, online and in-person about AS. I learned, literally, enough to write a book. But a strange thing happened. The more I read, the more I saw my youngest son. It was one of those “ah-ha” moments. I had never considered AS; even dismissing him when he had read a book about a teen with autism and asked “Mom, are you sure I don’t have autism? I never knew there was someone else that thought like me.” I had dismissed his concerns months earlier, but now I thought I may have dismissed the idea too readily.


My son is 14. He is a wonderful child, never disobeys, never lies, always does his homework, follows every rule. We had gone through years of temper tantrums but they seemed to have faded away, his sensory sensitivities were simply part of our life – I had always cut tags from his clothes until he became old enough and did it himself and his picky eating eventually gave way to trying new foods. The more information I read, the more all his quirky behaviors made sense. I suddenly realized why he would never initiate getting together with friends from school. If they called or invited him somewhere he was fine, but he would never make the first move. He once refused to eat anything but Spaghetti-Os and then moved on and would only eat macaroni and cheese. He “played” with Legos by re-creating the picture, following the instructions step by step but never made up his own designs.


He is in high school, is highly organized, gets good grades and has friends at school. He is a second degree black belt in Tae Kwon Do and is on the swim team. He still doesn’t like to initiate and spends a lot of time alone because he waits for friends to ask him to do something. But overall, he is accepting of who he is. He likes activities, such as the swim team or Tae Kwon Do that have “ready-made” activities he doesn’t have to plan or invite others to join him. He is content being by himself, telling me I worry about it more than him. Maybe I do.

But this post was about whether or not to seek a diagnosis. This is a personal decision, each family must decide for themselves. I will say, in my grandson’s case, a diagnosis was a good thing. He received services from professionals and he progresses more each month. But for my son, I am not so sure. He has AS, we agree with that, I have read books, shared information with my son, my daughter, my husband. None of us have any doubt but what we do wonder is, at this point, what will change with an “official” diagnosis?

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