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10 Lessons in 10 Years From My Son on the Autism Spectrum

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​My son, Ryan, was diagnosed with autism 10 years ago. Ten years, it doesn’t even seem possible. In some ways, it feels like a long time ago and in some ways it feels like just yesterday I was sitting in that psychologist’s office wondering if her garbage can was full because I felt I was gonna puke in it.

Ten years — it’s a lifetime, it’s a blink.

I remember the years of worrying, Google obsessing and watching for every single sign Google told me to look for prior to that 10 year diagnosis. Why is he doing that? Why isn’t he doing this? Why, why, why? Little did I know all those question would be answered with a six letter word: autism. And those six letters would have an impact on him and on me I could have never guessed 10 years ago.

Ten years — it’s a lifetime, it’s a blink.

There are still days I ask “why,” but mostly I ask “what.” What do we need to do to get from here to there? What supports need to be in place to help him succeed? What can I do to help him succeed? What does he need to do for himself to be successful? What can we do to help others? “What” can sometimes be as difficult as “why,” but I have learned after 10 years that many of those answers are up to him, and that has been a tough lesson for both of us to learn and accept.

Ten years — it’s a lifetime, it’s a blink.

These past 10 years, Ryan has come far and so have I.

Here are 10 things I’ve learned these past 10 years while loving my child with autism:

1. It’s not about me.

Sure, his autism has an impact on me and our family, but what he needs, what he wants, what makes him happy is about him, not me.

2. It does matter that you call it autism.

For years I had therapists say, “It doesn’t matter what you call it, just getting him the support is what matters.” I have learned that what you call it is exactly what helps get supports started in the first place. So yeah, it does matter what you call it. More importantly, one day it will matter to him what autism is and give him a better understanding how it has impacted his life.

3. What matters is how he defines the word “friend.”

4. “Different, not less” is true, but you have to see it, feel it and believe it.

5. The debate over “a person with autism” or an “autistic person” is not up to me, you or the autism community, it is up to each individual with autism.

If an individual with autism is able to tell you what they prefer, ask, don’t decide for them.

6. Alone and lonely are very different.

It may depend on the day, the moment and the circumstance. The only way to know, is to ask.

7. “Lack of displaying emotions” or displaying emotions in a way you don’t expect, does not mean someone with autism is “lacking” emotions.

How those with autism demonstrate and display their feelings may be different, but their feelings are never less.

8. Never say “never” and never believe anyone who tells you “never.”

I mean it, never.

9. There are many beautiful ways to communicate feelings without ever uttering a word.

10. Autism is not a one way street.

It is not only the job of autistic individuals to learn how to adapt to “our” world, it is also our job to understand and accept that although individuals with autism may see and interact differently in “our” world, they are just as entitled to be a part of it — free of judgement and condemnation.

​Ten years — it’s a lifetime, it’s a blink.

I never found out if that psychologist’s garbage can was full or not 10 years ago, because although I felt like puking, I didn’t. I guess somewhere, my heart took over both my brain and my stomach and realized my son needed me more than my churning lunch needed to see the light of day. That’s not to say there weren’t 10,000 times where I failed him, where I was selfish, misguided, tired and just plain wrong. But he always brought me back. He always guided me to where he needed to go next, just as I know he will in the decades to come with 10,000 more lessons to learn.

I look forward to learning more as this teenage boy transitions to adulthood, while I watch this beautiful transformation with an open mind and an open heart. Thank you, Ryan, for ten AWEsome years, and here is to many, many more.

Ten years — it’s a lifetime, it’s a blink.

I think I will try and prop my eyelids open for this next decade.

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Originally published: May 15, 2017
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