Why I’m an advocate

Henry’s capacity to feel has always been evident to me. Maybe it’s one of the reasons I didn’t see his autism as soon as others did. They noticed his aloofness and occasional lack of eye contact (like when he was focused intently on trains or Sesame Street), but I paid more attention to his engaging smile, playfulness, and affection.

Henry, age 2

Henry loved to be held by his mom and dad, loved to sleep on my chest, loved to have family hugs. There was no “coldness.” And he seemed to see, perceive, and feel things more deeply than the toddlers I’d spent time around.

In other words, Henry didn’t fit the only stereotypes I knew.  I didn’t see it because I had the same inadequate amount of knowledge that I am now doing my best to improve for others. I was the person I now want to help.

A friend of a friend once asked, “Does it go away? Is there medicine for that?” For the briefest of moments I wanted to shake her. My hands wanted to reach out and grab her and I wanted to shriek, “Are you freaking kidding me?” But the feeling ended as quickly as it came, and I was grateful she asked. (How many people never ask?) I explained calmly autism didn’t work that way – that his brain wouldn’t be changing – but that he has come so far in coping and adjusting to the world that is sometimes hard for him to handle.

I wasn’t really angry at her; I was angry because I was her. A little over 4 years ago, I knew next to nothing. In her shoes, I may have asked an equally ridiculous question. And that scares me. It scares me and angers me that so many people in the world are autistic and so many of us still don’t know what that means.

Why does it matter? First, when we don’t know how to interact with autistic people, we can do them serious harm. Second, we miss out on growth and beauty for ourselves as well.

It is not enough to know autism exists. I know string theory exists, but don’t ask me to explain it! Awareness is nothing without knowledge; knowledge is nothing without action. We must know what neurodiversity means, what autism does, and what we must do as a result.

I could take the easy way out. The easy way whispers, “Oh, if their children don’t have it, of course they can’t be expected to know.”  But I can’t let myself off the hook so easily. With knowledge comes great responsibility. I don’t deserve the privilege of raising this amazing young man, my precious Henry, if I can’t share what I’ve learned to make the world better for him.

New here? Glad you made it! I write about my unique joys and challenges as Mom to Henry, a smart, tender, quick­-witted, train-loving, autistic 10-­year­-old with an infectious smile. I long to encourage autism parents and empower all to see inclusivity doesn’t have to be difficult - it can be beautiful. Like what you see? Sign up here to receive news and occasional freebies just for insiders.

1 Comment

  1. “Awareness is nothing without knowledge; knowledge is nothing without action”
    love this statement and have been chewing on it since reading it.

Leave a Comment

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.