Weighing Privacy vs. Transparency When I Talk About My Autistic Son
I’m sitting with my son in a restaurant that is moderately noisy. A woman walks past our table and he reaches out and touches her as she passes him. She gives him, and then me, a look of discomfort; to me more a look of “teach your child some manners.” He frequently yells out “Hi!” to strangers in the grocery store. Sometimes they say hi back, and sometimes they don’t. More often than not they startle at the loudness and suddenness of his greeting. He asks every checkout person we meet what color their car is and if he can have a sticker.
I find his quirky conversation skills to be pretty endearing, honestly. I take it personally (much as I try not to) when people don’t receive him well. I worry about his feelings as he grows and becomes more aware of how he doesn’t always fit in. Maybe he won’t care, but if he does I want to shield him from the judgment of others. Every time I get a look, or a snide comment, or an audible sigh or other gesture of disapproval, my heart sinks and I want to shout out, “My son is not a bad kid, he’s autistic!” I never do. I usually tell myself it’s their problem and none of their business why my son doesn’t meet their limited expectations of what constitutes a social interaction. No, I tell myself, I don’t have to justify his behavior. They should be more educated.
In my personal life, I’m a pretty open book. Friends, family, coworkers ask me about our life and I will tell you the real deal — the good, the bad and the ugly. I have made really open and honest Facebook posts (on a private account) in regard to his autism, and by extension my reactions to autism and coping strategies. When I do, it’s usually met with positivity. By sharing our stories, hopefully I’m widening someone’s perspective who might not know anything about autism and softening their heart to his challenges and what they might think are strange behaviors. If my words make it easier for someone to understand him, or any other autistic person, I feel like it’s worth it.
On the flip side, I often agonize over sharing details of his life without really asking him. He’s only 5 and can’t give reasonably informed consent, but I care what he thinks. I care about his privacy. His disability is not my war cry to declare to the world what a great Mama Bear I am. I want to make his story about him, but I can really only tell it from my perspective. I never want him to feel as though I didn’t honestly consider his feelings.
At the end of the day, I try to find a balance between privacy and transparency. My gut feeling is that if we never discuss it, then he will always be misunderstood by people who don’t know autism. There’s power in being unashamed of who you are, and it is my life’s hope that he has that. I’m careful in what details I share though, so it doesn’t cross the line into being too personal, and I try to always portray him in a positive and loving light. His behaviors might challenge me, but it’s never anything he’s deliberately doing, and I always love him. My hope is that by being transparent, it will help people with no exposure to autism understand it a little better. And it’s harder to judge someone if you know more about their story.
Getty image by Nadezhda1906.