Ten things I've learned in my ten years as an autism mom

This blog post was written by Kathy Hooven and her son, Ryan, who has autism. You can read more about Kathy and her family on her blog, "The AWEnesty of Autism."

My son Ryan was diagnosed with autism ten years ago. Wow, ten years…that doesn’t even seem possible. In some ways, it feels like a loooooong 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 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 ten year diagnosis. Why is he doing that? Why isn’t he doing this? Why does that freak him out? Why doesn’t this freak him out? Why is he alone? Why is he angry? Why is he crying? Why won't he eat? Why is everything so hard? 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 that I could have never guessed ten years ago.

Ten years...it's a lifetime, it's a blink.

There are still days that 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 is sometimes as difficult as why, but, I have learned that ten years in, many of those answers aren’t up to me alone like they were when he was five, they 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 ten years, Ryan has come so far and so have I. I could write a list of ten thousand things I have learned in the ten years since we first heard The A Word, but, you wouldn't probably take the time to read all of them, so, I've decided to share with you the cliffnotes version of those lessons.

So here it is, ten things I have learned these past ten years while loving a 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 what you call "it". 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 that support started in the first place, so yeah, it does matter what you call it. More importantly, one day it will matter to him what “it” is and give him a better understanding how “it” has impacted his life.
  3. The word “friend” doesn’t have to be another dirty F word as long as you listen to how he defines that word.
  4. “Different, not less” really is true, but, you have to see it, feel it and believe it or he NEVER will.
  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, so, if the individual is able to tell you what they prefer, ask, don’t decide for them.
  6. Alone and lonely can sometimes by synonymous and sometimes they can be very, 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 they 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 ten 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 ten thousand 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 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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