Most people avert their eyes when they see me out with my kids. I have a way of standing out in a crowd. I’m over six feet tall, and I typically wear my little one in a backpack carrier while I hold my older child’s hand. My older child laughs to himself, asks the same questions over and over in an “outdoor” voice, waves his free hand around at nothing in particular, skips and flops his body in different directions as we walk forward. That usually attracts some attention. But the thing that turns the attention away is what’s written on my black purse in large bright pink letters: ASK ME ABOUT AUTISM. And if that’s too subtle, I also have it written on my t-shirt.
The “A” Word
I learned the power of the word “autism” many years ago, when my family began the journey of diagnosis, treatment and long-term planning. We sought parenting advice for our difficult-to-manage child from a family counselor, who brought in a developmental psychologist for consultation. Our toddler was red-flagged for “probable autism.” But the family counselor could not bring herself to say the word “autism.” She wouldn’t show us the psychologist’s report, even though we requested a copy in person and in writing. She would only say that our toddler had developmental delays, and referred us to an early intervention program. The leader of the early intervention team finally gave us a copy of the psychologist’s report a few months later.
The Autism Bubble
For me it was both liberating and terrifying to see the word in print. I also realized that other people need to see the word, too, for a variety of reasons. Strangers sometimes make judgments based on false assumptions about a family’s situation, and putting the word out there can help them understand what they are seeing. As soon as they understand, they look away. I’ve observed this countless times. The phrase “ASK ME ABOUT AUTISM” is my armor, so that even in public I can enjoy my children in our own autistic bubble.
Comfort, Support & Outreach
There are exceptions, of course: not everyone wants to avoid us. I have met many kind-hearted strangers over the years who want to find a small way to offer their assistance or emotional support, and seeing the word gives them a way to open a conversation. Then there are the parents and family members of children with special needs who feel less alone in the world when they see my purse or t-shirt — their faces light up and they greet me like an old friend. One woman approached me at a carnival to tell me that her family was celebrating the adoption finalization for their autistic child. A teenager at the bowling alley said that seeing my son playing with his friends gave her hope for her non-verbal brother. I’ll always remember the bitterly cold February morning when I was mall-walking with my son, and from afar I noticed another woman holding the hand of an older child with sensory integration issues — we recognized each other like long-lost sisters and chatted for the few moments that our children allowed.
It’s OK to be simultaneously curious and fearful. You’re not alone. So go ahead: ask me about autism.