Isolated with Autism


This post was originally written for another blog, but I thought it could generate some good discussion here. What does Autism Awareness mean to you?

Autism awareness means a lot of different things to different people. It means more funding for research and services, it means treatments being covered by insurance, it means more service providers and that teachers are aware of how to support your child’s unique learning style. But as a parent, awareness to me means something more subtle and at times, even more important. It means feeling welcome in my community.

To get my son out the door for something non-routine takes a lot of planning, talking and energy. A trip to the mall can take two days of negotiations, one detailed day schedule, four behavior supports, three fights and a final tug out the door.

Imbedded into the outing is an activity solely for my son – special food, gross motor break or a kid activity. So these outings are definitely not “me time.” But they do serve a purpose. I cannot let my son get into a rigid mindset that includes staying at home. Even one day spent solely in the house, means that the next time we want to leave is much harder. So I rack my brain for little outings that will get us out, be fun, and fill us with warm memories – you know, the ones that most families enjoy.

But too often visions of happy family outings come crashing down when my son has an unexpected reaction. Noises are too big, the surroundings are too busy, someone keeps getting in his face, and he speaks too loudly, starts to cry or moves his body in “odd” ways. These are all coping strategies of his. And usually they are fine. But in mixed company? Not so much.

It’s like I can hear the inner voices that accompany the stares and looks from other people: “Why can’t they control their son?” “I wouldn’t let my child act that way.” “He’s a little old for tantrums.” “Parents these days.”

So here’s a nice memory of mine that might help you the next time you’re feeling a little “judgy.” (Because we’re all guilty of doing that to other parents, aren’t we?)

  • Practice acceptance, actively. Like the woman who saw my son walking in circles, not responding to my pleas to come back; who knelt down and spoke softly enough that he stopped, looked at her and became transfixed. In a world that is overwhelming and chaotic to him, she created a small pocket of calm. She distracted him just long enough for me to wrangled his little brother back into the stroller. She stood, gave me a warm smile and said, “You have the most beautiful children. So bright.” And I almost cried. From relief…from gratitude and joy.

So during autism awareness month, I ask as a mom, that you see those with autism. They are everywhere. And instead of judging them and their families, create a moment in which you accept them. It’s as easy as asking yourself, “I wonder what they’re dealing with?” And in that pocket of compassion, we all thrive.

Author: Shannon

Shannon parents a son on the spectrum, lives in MN and writes to stay sane. She is passionate about connecting families to the services that will transform their lives. Read her full bio here.

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