“Did you take Tylenol when you were pregnant with me?”
My 21-year old son, Jack, texted me this just minutes after President Trump’s press conference in which he linked autism and Tylenol. Jack was diagnosed at 18 months old, and now he seemed to be asking me: Did I cause this?
My breath caught. My stomach sank. I felt empty, oddly disconnected for a moment.
Jack was 8 years old when we told him he had autism. Since then, it has never been a secret in our house. We speak openly about his gifts, his vulnerabilities and what his future may look like.
But this is the first time he’s asked about the origin of his disability. And for once, I didn’t know how to answer him.
Shining a spotlight
Whether you love or loathe the most recent political narrative, we are now paying attention. Autism is once again in the spotlight. This is good. This is where the work is.
What causes autism? With numbers continuing to rise, this is an important question worth pursuing, even if the agenda of the pursuer remains unclear.
The new report from the Department of Health and Human Services says using acetaminophen can increase the risk of autism — though that’s not quite what the science says. (Studies show an association — not causation, and the scientists behind them simply recommend taking the “lowest effective dose, shortest duration,” not stopping altogether.)
For two decades now, guilt has hovered around my peripheral like smoke at a campfire.
This accusation feels particularly personal. After all, Tylenol is a drug recommended as safe by doctors.
Time and time again, the finger seems pointed at us: the mothers. Time and time again, we are called upon to defend ourselves.
Real families — real challenges
Parents of diagnosed children are encouraged to look for the silver lining. At least he talks! At least you have other kids! At least you have the resources for services!
For many, the future is tinged with darkness. Adults in diapers. Aggressive behaviors. An entire community left in the margins of a culture that celebrates a particular trajectory of sports, academics, marriage, career.
You see, autism came along, and for many of us, disrupted that path entirely.
Instead of SAT prep courses and college visits, we worry about guardianship. We apply for Social Security Insurance. Instead of graduation, our children linger in high school programs long into their 20s. Old enough to buy a cocktail, but unable to count the change to purchase a cookie. Still, we soldier on.
Then we hear words like epidemic and disease — and we stop in our tracks. Because autism is neither of those things.
What is it, then? What do you call it? That is the age-old question plaguing parents and politicians alike. Inside this political narrative, one question circles the periphery. Where are the humans?
What we really need in the autism discourse
In our latest book, “Autism Out Loud,” I collaborate with mothers Kate Swenson and Adrian Wood. Together, we write about our journey raising children on the spectrum, each of whom has a vastly different autism profile.
At 21, my son, Jack, manages his own Amazon Subscribe and Save but doesn’t comprehend the concept of a lease. Fourteen and nonverbal, Kate’s son, Cooper, plays in an adaptive baseball league, rounding the bases with his mother by his side. Adrian’s son, Amos, 12, is just beginning to understand how to do homework.
Perhaps a simplistic example, but the story of these three boys perfectly distills the argument into one undeniable fact: Autism is a spectrum. A range of temperaments, behaviors, vulnerabilities and needs.
This week, a fire has been lit. We will do the only thing we know how to do: use the flame to bring autism out of the shadows, and into the light.
Carrie Cariello
Likewise, there is a wide discrepancy of services and support across the country, with some kids receiving a diagnosis as early as toddlerhood, others well into adolescence.
And the prevailing concern is what happens when kids with autism grow up — when what was once perceived as cute and quirky translates into annoying, or even threatening.
However, autism’s themes are often universal. Grief. New beginnings. An unexpected life. Our experience inside each theme is different, depending on our spot on the bell curve.
Autism is not a gift or a tragedy.
Autism is not an identity or a choice.
Autism is heartbreaking. Autism is magical.
Autism unites families. Autism destroys families.
Round and round we go. What if, in the case of the spectrum Venn diagram, there is an overlap between joy and sadness, curiosity and research?
We cannot die. This is the mantra that vibrates beneath our ribcage. We cannot die and leave our vulnerable children behind. But we will, because immortality belongs to no one.
So, we endure being the center of yet another political storm with one collective goal in mind: to do better.
Do a better job looking for the cause. Do a better job with early diagnoses. Do a better job creating an infrastructure within which members of our very own family can work, love, live and thrive.
This is our call to action. This is what we want on the to-do list.
This week, a fire has been lit. As a community, we will do the only thing we know how to do: use the flame to bring autism out of the shadows and into the light.
This is good. This is where the work is. Growth is disruptive.
“No, buddy,” I typed back. “I didn’t.”
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