On Monday, the New York Times published this article: “A Furious Debate Over Autism’s Causes Leaves Parents Grasping for Answers.” Exactly.
I have experienced what these parents face. The last time autism received this much media attention was in the early 2000s, as medicine worked hard to diagnose my adorable two-year-old. Some damaging information was published about MMR vaccines specifically, and it took years and many peer-reviewed studies to disprove the harm they caused. But newer parents don’t know this history. The musings are different from twenty years ago, but young mothers now will worry that the acetaminophen they took for a pregnancy headache was a mistake.
As a Preschooler
Sunday night dinner at my parents’ condo is finished. My preschool children have left the table, absorbed in toys my mom keeps for them. Autism has been in the news for months; it’s inescapable. Even British Prime Minister Tony Blair is hounded by Downing Street reporters about his son Leo’s first MMR vaccine.
“Maybe it’s something in the air?” Dad wonders. “It’s got to be environmental.” No one knows. I fight to stay composed, shoving down gnawing fear that Ges’s lack of eye contact, inability to form words, and complete lack of coordination stem from something I breathed, ate, or did while pregnant.
It was tough, and continued for years — a blow could come out of nowhere and knock me flat. When I was already unsteady and doubting Ges’s capacities, people’s musings about the origins of autism often felt like personal attacks. Even if I knew better, my heart didn’t.
In Elementary School
At the start of a school day, I overhear a conversation I’d like to unhear between one of the elementary school’s teachers and a consulting specialist. These visits are professional boosts for school teachers, providing an opportunity to consult with a visiting expert who understands. I’m not interested in intruding, and I don’t, but their words follow me down the school’s old hallway past the primary grade classrooms, through clusters of kids and parents heading where they need to go.
“…yeah, maternal age and exposure to THC…” (muffled words)
“…autism!” Spontaneous laughter. “That’ll take out more than half the population!”
I didn’t use marijuana, but at 36, I was a “geriatric mother.” Curtis had a colourful youth, and is almost ten years older. Did we cause this? Did I? I struggled to shove away familiar, blaming thoughts whenever a news article mused about prenatal exposure to pesticides or wondered about the effects of air pollution on fetuses. What about the mercury in tuna everyone talks about? Did I eat tuna melts when I was pregnant with Ges? What about paint fumes? In the midst of a nesting frenzy, weeks before his birth, did I breathe in toxins while repainting the living room? I was a tiny newborn, and both my babies were small; did his low birth weight predispose him to autism? What about air pollution? Did living on the east side of Vancouver cause Ges’s autism?
These questions swarmed, uninvited, as I navigated the hallways and tried to push them back, whispering that I’d done my best. Reassuring myself until I could fold into Curtis so he could cradle me, for the thousandth time, murmuring reassurances to soothe me.
Such a beautiful piece Carmen. Reading this story makes me feel the raw emotion of your experience as if I was there with you during this time. Please keep writing these heartfelt stories so we can continue learning and understanding.
Thank you Cheryl.
The first thing I would do as a parent is seek information. Not just medical but online and all the mixture of theories found there. This experience as a parent is needed not only for first hand sharing but also the opening up of conversations the publication will begin.
Carmen Farrell has a way of conveying details that makes her writing personal, in a way that is missing in the market. Autism as a subject needs a first hand point of view now more than ever. If publicized it will be a welcomed and fresh addition.
Beautiful writing. I can’t imagine the questioning. Looking forward to more of your writing.
Thank you, Sandra.
Resourcefulness for all parents, especially parents grappling with possible diagnoses for their children, is essential. It was harder to find more than twenty years ago: reliable information, support from like-minded parents. But finding ways to develop one’s own internal anchor helps not to feel emotionally hijacked every time people in positions of power muse about possibilities.
Your work will be embraced by so many who have been or continue to be on the journey
Your willingness to share is exemplary.
Thank you.
I can so relate to the feeling of being under attack, but often at the same time recognizing the good intentions of those I was feeling attacked by. And that ambiguity made it even more difficult to process my emotions and to talk about them. Even to figure out what I wanted! The light you keep shining on what it’s like to mother a child with differences is so essential, Carmen. Thank you for your honesty and courage.
Thank you, Beatrice. I think you make an important point. I never blamed anyone for their out-loud thinking…behind their curiosity, I saw their good intention and desire to help. But the emotional impact still was what it was…I was moving through my day, and then suddenly someone’s comment would drag me into a different reality. It took a long time, and a lot of practice to figure out how to stay emotionally centred so that the other person could have their curiosity, and at the same time, I didn’t need to get pulled into worries about different possible futures…or blame myself for what was or wasn’t done in the past.
Carmen, I have learned so much from you and Ges about the meaning of true inclusion. Please keep writing, I always look forward to your next blog!
Thank you Kathy. I appreciate your support!
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