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?
My son wants to go into the military. Will a diagnosis interfere with his plans? Will it make it harder for him to be accepted in the military? With the proposed changes, it is possible we can start with a diagnosis of AS and have it automatically change to a diagnosis of autism in another year or so. (I personally don't agree with the changes.) He relates to those with AS, he believes he has AS, he understands and accepts his way of thinking, his way of "being." He doesn't mind the word autism but as a mother I see the roadblocks it may create when applying to the military or applying to any job. As an advocate for those with ADHD, mental illness, autism, AS, I feel torn. On one hand, are we doing him a disservice if we don't seek an official diagnosis, on the other hand, he is doing well, is it right to fill his time with doctor's visits, evaluations and other services he seems to be fine without?
So for now, our decision is to not make a decision. We are going to go along as we were, except with broader knowledge and understanding. We know his challenges and we work with him every day on those challenges. We also know that the diagnosis is there, waiting, if we should ever need it.
This is our decision but it isn't necessarily the best decision for everyone. As a parent, or an adult with AS, you need to decide what is best for your life. My son has only mild symptoms and they don't seem to be interfering in his life. Are yours? That is the question you must answer. If your symptoms, your challenges, are holding you back, you may want to talk with a doctor and seek a diagnosis and research the resources available to help.
Published On: September 28, 2011