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To tell or not to tell, that is the question. Like Hamlet, we have a choice. As a parent, when you get the diagnosis of autism or any other special need applied to our child, do you tell your child that he or she has this diagnosis?

Talking About the Diagnosis
My son, Chris, was diagnosed just before his sixth birthday, as he was about halfway through first grade. He was old enough to understand that it was important and we told him about the diagnosis the same day we found out. We wanted to do what we could to dispel the mystery of autism, starting with Chris himself. An autism diagnosis isn’t The End. It isn’t The Beginning. It’s information along a path that this child is walking. He was autistic before the diagnosis just as certainly as he will be autistic all his life. Deciding to let your child know what autism is and how you are using that knowledge to help him understand his world is the important part.

Discussing the Diagnosis May Be the Right Thing
Chris and his typical brother Luke have known about autism just about as long as they’ve known how to read. And if I had it to do over again, I would do the same thing. It was the right decision for our family to discuss autism openly and honestly, and this is why:

  1. I wanted Chris to know why some things were harder for him to learn than for his brother. There is nothing wrong with his autistic brain or with his brother’s neurotypical brain. Both work, but they get the job done in different ways, and each can learn to improve from the other. Luke tends to gloss over details in favor of trying to interpret the whole context at once. Sometimes he jumps to the wrong conclusion. Chris is all over the details but finds it difficult to see the big picture. He can spend too much time on individual trees and miss the fact that they are part of a forest. So, Luke can learn to slow down a little and observe the details before making conclusions. And Chris can learn to hazard a guess at the larger context after he has processed some of the details and analyzed what they might have in common.
  2. I didn’t want Chris to worry that he was crazy. Chris needs to know that he’s normal. Normal for him. After all, what’s “normal” anyway? Everybody’s weird about something, whether it’s picking every little fuzzball off one’s sweater, eating the same thing for breakfast every day, or obsessively checking stock prices or baseball stats. We all do it. And it’s OK. That’s normal for us. Everybody has to feel comfortable in his or her own skin. In the final analysis, “normal” is just a setting on the washing machine.
  3. I wanted Chris to know that he was all right. We have a running gag in our house that comes from the movie [easyazon-link asin=”B002ZG97YM” locale=”us”]How to Train Your Dragon[/easyazon-link]: “you just gestured at all of me!” The main character in the movie starts out basically OK with himself, even though he’s completely different from everyone around him. Initially, nobody understands him and assumes he’s fundamentally “wrong.” Of course, the thing that makes him different ends up being the single most important part of the movie, and “all of him” ends up saving the day. Chris needs to know that he is valuable, important, beautiful and autistic. Those adjectives work in collaboration, not in conflict. “All of him” is what makes him Chris. And Chris is OK.
  4. I wanted him to understand that he could do whatever he wanted to do, even (and especially) if it takes hard work. Autism is not an excuse. It’s a neurological condition. I recently found out from Chris’ science teacher that he’s an auditory learner in her class. After I picked my chin up off the floor, I realized I’d fallen for a classic blunder: making assumptions about people with autism makes an “ass” of “me.” But autistic people are “supposed” to be visual/tactile learners! Well, this one is an auditory learner in his science class. Autistic people aren’t “supposed” to be able to read facial expressions, either…

Summary
The takeaway from this is pretty simple: don’t put any kid in a box. As I mentioned, an autism diagnosis is information. Chris is a dynamic, curious, thinking individual, not a diagnosis. He learns the way he learns, relates the way he relates. My job as a passionate parent and advocate is to make sure he gets the opportunity to learn and demonstrate his knowledge, to explore his world and make friends, to be weird without apology. In a nutshell, I’ve learned this: never, ever tell any kid, typical or autistic, what he can’t do. You’ll be wrong.

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Kate Dran is a user experience analyst, professional writer, autism advocate and parent of 2 beautiful and perfect sons, one with autism, one developing typically. She founded Adaptive Solutions Analysis, LLC , a private consulting firm that provides usability assessments and user experience analysis for adaptive technologies that support the cognitive, sensory and motor development needs of K-12 students with autism. She believes that autism-friendly user experience is human-friendly user experience.