Lessons of Awareness, Acceptance, and Action I’ve Learned About Life From My Son With Autism
by Judith Ursitti
At our local grocery store, there is an oversized community chalkboard on the wall just as you walk toward the restrooms. The chalkboard calendar includes a listing of random national holidays—things like National Blueberry Cobbler Day or National First Cousins’ Day.
But sandwiched between April Fool’s Day and April 3 (National Find a Rainbow Day) is April 2—National Peanut Butter and Jelly Day.
Or, depending on whom you ask, World Autism Acceptance Day.
Or even World Autism Action Day.
Or perhaps all of the above?
Like most things related to ASD, it can be complicated. But I can tell you that despite the complications, I have learned so much about awareness, acceptance, and action from my son, Jack.
The Road to an Autism Diagnosis
When Jack was diagnosed with autism at age 2, April 2 was just another day on the calendar. I was blissfully unaware. My husband and I were smack dab in the thick of starting our family, creating the home we’d always dreamed of, and thinking about things like preschool selection, potty-training, and paying the bills.
Our firstborn had been an early talker, so we didn’t worry too much that Jack wasn’t talking or pointing as his second birthday approached. Fortunately, our pediatrician was a big believer in routine development screenings. At Jack’s 2-year checkup, she got down to business.
I will never forget her wheeling over to Jack and me on her round pediatrician stool as we sat in the examination room. As Jack relaxed on my lap, sucking his thumb under the fluorescent lighting, I wondered what I might pick up for dinner and how he would respond to the impending vaccines.
“So. How many two-word phrases does Jack have?” our pediatrician smiled and asked.
“Hmm,” I responded. “He doesn’t have any two-word phrases. He has one word: ball.”
She went on. “Does Jack point?”
“Does he wave bye-bye?”
“Does he try to show you toys that he’s playing with? Does he pretend play?”
“No,” I responded.
This went on for a bit. And with every utterance of the word “no,” my heart sank.
Our pediatrician looked me square in the eye and said, “Something’s going on here. We need to figure out what it is.”
Fortunately, she was an exceptional pediatrician (gosh, we were lucky) and a person of action. In the coming weeks, with her referrals in hand and my head spinning, we would see specialists. And Jack would undergo many tests.
When the pediatric neurologist bluntly informed me that Jack had an autism spectrum disorder, hot, heavy tears forced their way out of my eyes. Again, Jack relaxed on my lap, leaning into me, sucking his thumb.
I confess I did allow myself the comfort of denial for a short time. My husband and I talked and talked about how this just couldn’t be right. After all, Jack was very affectionate and connected to us.
But Jack patiently showed us exactly who he was.
Turning Awareness Into Acceptance & Action
One day as I was feeding him, I watched as he lounged in his highchair, staring and staring out of the farthest corner of his right eye at the way the light hit the blinds just so. It was a human behavior I had never witnessed or experienced. He paced back and forth along the perimeter of our backyard fence, over and over.
Slowly but surely, he made me keenly aware. He was autistic.
As the awareness sunk in, for me, action ensued. Our unflappable pediatrician encouraged me to access support and services for Jack as quickly as possible. She helped me understand that early intervention could truly empower Jack with skills to help him communicate and connect to the world around him.
I walked out of her office with another handful of referrals, this time for speech therapy, occupational therapy, and applied behavior analysis (ABA) therapy. I called and added Jack’s name to waiting lists. I spent hours on the internet, searching for answers, support, and maybe someone — anyone — who might understand and help.
When our insurance plan notified me that, simply because of Jack’s autism diagnosis, no therapies would be covered, I was floored. Again — my anger quickly morphed into action. Jack sucked his thumb and spun the wheels on his plastic Fisher-Price bus repeatedly as I began contacting legislators and fellow advocates.
Eventually, Texas became the third state to pass a law prohibiting discrimination against autistic people by health insurance plans. Within the next decade, and after a lot of awareness and action, all 50 states would adopt similar requirements. Sixteen years later, the work continues as just this past February, Texas finally expanded this requirement to Medicaid-enrolled children.
Sixteen years later, my sweet, thumb-sucking toddler has grown into a seriously handsome young man. He has continued to make me aware in his own endearing, sometimes-frustrating, often-amazing way of how human beings are unique. He has taught me to accept and celebrate the person he is.
Our experience has been one of immense darkness and the brightest of lights. I have watched Jack struggle and suffer. I’ve also witnessed him doing things that I never dreamed of. I’ve become aware that there are many perspectives in the constellation of human beings who have been diagnosed with autism spectrum disorder and also those who love them.
Celebrating People With Autism Spectrum Disorder
To me, all these years later, the most important action needed this April for Autism Awareness Month is an acknowledgment of differing experiences and perspectives. Perhaps we could make an addition to the list of April identifiers. Not only should we recognize Autism Awareness/Acceptance/Action Month, let’s also begin to recognize Autism Acknowledgment Month.
Can we all simply acknowledge that autism can be hard? And sometimes it’s a gift? And parents aren’t perfect, and siblings need support too? And therapy, funding, and research all matter?
Looking back, I acknowledge that there have been tough periods that I deeply believed represented what our future would forever be. But over and over, the message has been clear. It’s a message that I first read scribbled across a different chalkboard, this one in a high-school classroom in small-town Texas. My freshman history teacher wrote it on the first day of class:
“The only thing that doesn’t change is change itself.”
He was so right.
This Autism Acknowledgment Month, I accept that pain isn’t permanent, action can be healing, and awareness will always be needed, just in different ways.
Happy April, however you choose to celebrate.