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Autism: A Mother Looks at Diagnosis

In all honesty, telling people what we were going through only made our lives easier. Before then, we worried that Andrew's occasionally aberrant behavior was off-putting. But once he had a formal diagnosis, everyone cut us a lot of slack, and instead of wondering what the hell was wrong with us as parents, most people we knew admitted to a newfound respect for us for dealing with so much.

Real friends don't love you more for being successful or less for having problems. If anything, it works the opposite way – we're all so busy that sometimes we forget to stay in touch with friends when everything's fine for them, but we rush forward when they need us. Now is the time to take advantage of that. Talk your friends' ears off, complain, bitch and moan to them about how miserable you are, and if they should offer to help out, let them. You're dealing with a huge challenge – take advantage of every minor plus it has to offer.

What People Say
I know I said I was glad I told people, but I have to admit that I was horrible about judging everything said to me in response back then. I was hurting all over, and however calm and rational I may have sounded, inside I was quivering with the expectation of being hurt more. Let me give you some examples of the innocuous things people said and how I overreacted to them.

There were the people who jumped a little too eagerly at the news, in my opinion – "Oh, well, THAT explains it. I mean, it was clear something was going on...." That reaction always pissed me off. Are you telling me my kid always looked and acted weird to you? You never said anything to me, but now you're telling me you were sitting there JUDGING us all the time?

(Remember, I wasn't being rational – I was being emotional. Also remember I didn't say any of this out loud. Thank goodness.)

Another group went for reassurance. "Oh, really? Well, I'm sure in a few years he'll be fine." Yeah? How do you know that? The experts we're consulting don't know what lies in Andrew's future, but you're so incredibly clairvoyant you do? Give me a break.

Sometimes people would try to act like it was no big deal, that they themselves went through something similar with their totally normal kids and came out the other side. "The early years are hard for all kids," they'd say. "We were so worried when our kid was three and didn't play catch, and now look – he's captain of the softball team!" Wait a second – was your kid diagnosed with autism? Excuse me, but was your kid diagnosed with autism? WAS HE DIAGNOSED WITH AUTISM? Because, if he wasn't, I don't really want to hear about your experiences.

I knew that those who expressed sympathy meant well – "Oh, how awful! I'm so sorry for you. You must be overwhelmed," etc. The problem was that, at that emotional point in my life, they only made me feel worse. My son – my gorgeous, bright, loving little boy – had turned into something so awful that people pitied me for having him. That sucked. (Later, I grew to kind of enjoy the pity and sympathy. But that was later.)

Worst of all were the people who questioned the diagnosis without any medical or neurological information to back up their challenge: "Are they sure? Because he looks fine to me. Sometimes doctors just SAY these things because it's what they like to say. I just don't believe it." You don't, huh? Did it ever occur to you that we didn't particularly want to believe it, either? That we ran home to read everything we could about autism only to discover, with a sick stomach and heart, that Andrew had pretty much EVERY SINGLE SYMPTOM of your basic classic autism? Self-stimulation? Check. Social delays? Check. Language delays? Check. Inability to make eye contact? Check. Inability to point to something he wants? Check. Inability to follow simple directions? Check. And so on. We're telling you our kid has autism because we've done the research and know it's true. So please don't start second-guessing us or the experts we trust.



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From Overcoming Autism by Lynn Kern Koegel, Ph.D. and Claire LaZebnik. Copyright © 2004. Used by arrangement with Penguin Group (USA) Inc.

If you'd like to buy this book, click here or on the book cover. Get a 15% discount with the coupon code FENPARENT.


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