Everywhere you turn, autism is in the news, for all the wrong reasons. This current administration not only rekindled this bonfire but also is dousing it with fuel. A recent announcement claiming that autism is caused by acetaminophen taken during pregnancy has been debunked faster than President Donald Trump will learn to say the word correctly. These false and ridiculous claims are adding to the stigma, further hurting autistic people, their families, and society overall. It’s an easy out that puts unnecessary fear, blame and shame on mothers and completely misses the point.
Autism isn’t a disease; it’s a neurotype, a variation in the brain. It’s part of one’s identity, just like gender, sexuality or race. And, similar to people with identity differences who are perceived as outside the “norm,” the uninformed and fearful feel the need to find a fix, a cure or ways to make people “normal.”
Discovering the cause of autism isn’t the point. Creating neurodiverse-affirming resources, services and accommodations that support autistic people and their families is what is actually needed.
As a mom to three boys, two of whom are autistic/PDA — pervasive drive for autonomy, a nervous system disability and subset of autism — we’ve experienced firsthand the shame, guilt, blame, lack of understanding and disparities in resources and services, not to mention how our boys, and our family, are perceived and treated.
“Your boys don’t look autistic.”
When our boys were initially diagnosed, my husband and I did not know much about autism. We knew what we saw from characters portrayed on TV, and yet, we weren’t afraid or ashamed of this diagnosis; we were grateful. Grateful to be able to understand them better, to learn how to help them and, most importantly, to help them help themselves. So we began researching and found new, distinct ways of looking at autism.
There’s the old-school medical model that focuses on autism as a disorder with deficits that need to be fixed through behavior modifications and compliance (read: they need to be changed to be more like everyone else). And then there’s the neurodiverse-affirming lens that recognizes and focuses on strengths and how to maximize abilities. I’ll analogize it to a child coming home with a C on their report card in social studies and an A in math. Many would focus on the C and how to improve their social studies grade, entirely missing the chance to applaud and encourage their abilities in math.
We chose to seek out and listen to people with autism to learn about their experiences, what has been helpful, what has been harmful and the things they wish were handled differently.
Autism is a spectrum, meaning it affects people in a variety of ways, from social and behavioral, to how, and if, they communicate and experience the world. Those experiences and abilities can differ depending on the situation, moment or day. But isn’t that true for everyone? Don’t all “normal” or neurotypical people have good days and challenging days and have to make adjustments and accommodations accordingly?
This latest announcement, with its shameless rhetoric, further emphasizes the already scarce neurodiverse-affirming services, systems and environments, reinforcing that our society is not set up (or willing) to meet the needs of autistic people. In doing so, it continues to isolate individuals and families, while perpetuating misconceptions and discrimination surrounding autistic and neurodiverse individuals.
Autistic people have always been part of society, even if they weren’t diagnosed or recognized as such. Some of our greatest scientists, artists, entrepreneurs and musicians are autistic. The perception of a “dramatic increase” in autism is neither dramatic nor an increase. Like many people with differences throughout time, they have been pushed aside, ignored or labeled as lazy or bad kids.
It’s time we turn our focus — and our resources — to educating and changing the systems, schools, professionals and public by listening to autistic voices, understanding their experiences, and providing appropriate resources and support for autistic individuals and their families.
Erin Kuhn-Krueger is chief storyteller at ZBD Creative and has more than 25 years of experience in marketing strategy, branding and content development.
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