No more autism awareness

It’s time for acceptance

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illustration by Katie Lee
Hero image
illustration by Katie Lee

Not so long ago, I asked my daughter what it means to her to be autistic. She said, “It means I have more problems.” Gut punch. She deserves to feel proud of all of who she is, and it seems that despite my best efforts, her instinct was to describe an essential part of her identity in starkly negative terms. There is, of course, truth in what she says. The society we live in makes it hard to be autistic.

She is such a creative, courageous, beautiful, empathetic, intelligent and passionate child. I see her only in the most positive light. She changed the way I see just about everything for the better. But I did have to overcome misinformation and fear of autism early on. Have I said or done something to lead her to this conclusion? Or has she absorbed the prevalent, negative framing of autism all around us?

Media, even my dear friend NPR, inevitably refer to autism as a “disorder,” because unfortunately, that’s how it’s labeled in the DSM. We all hear concerned reports on skyrocketing rates of diagnosis. Stories of misguided parents who avoid vaccines, preferring to risk their kids’ lives rather than risk the neurological difference of autism (despite no connection between vaccines and autism). These attitudes are in the air. All around her.

And that’s why Autism Awareness Month (including today’s World Autism Awareness Day, marked annually on April 2nd) is such a problem. While well-intentioned, the effort carries lingering stereotypes and prejudice. A call for cures. And panic over an epidemic that supposedly takes children away from their parents, locking them away inside themselves.

The way we frame things, people and ideas shapes whether we value them, and how we respond to them. We do this framing, with care and intention, for brands all the time. But what about fundamental issues, differences and challenges? IDEO re-branded the business of smallholder farming. Could new narratives for climate change or homelessness, based on fundamental truths, garner more understanding and support? What about immigration or mental health? Or neurological differences like ADHD or autism?

Autistic people are nine times more likely to commit suicide than neurotypical people — and it’s not because of their difference, it’s because of how their difference is regarded. We must change the narrative. Now.

As commitment to the Volk became a priority in the Third Reich, Nazi child psychiatrists… increasingly noted children they believed forged weaker social bonds and did not align with the group.
Edith Sheffer Asperger’s Children: The Origins of Autism in Nazi Vienna

To address the framing and (mis)understanding of autism, the roots of this bias must be examined. The labeling of autism — its addition to the DSM — is inextricably linked to efforts of the Nazis to rid society of difference. They first targeted developmentally and physically disabled children including those who’d qualify for an autism diagnosis, followed by Jewish communities and all those deemed “other,” racially or in any number of ways, as dictated by ever-widening criteria.

In the eyes of the Third Reich, unity and collectivism — a German concept of social feeling called “Gemüt” — became central to citizens’ worth. This not only meant a commitment to deep community ties but unquestioning allegiance. The social differences of children who would meet the criteria for autism, the ones that Hans Asperger observed and saw speaking unvarnished truth by way of course and interacting socially in unconventional ways, put their lives at risk.

The way autism is viewed today is still shaped by its diagnostic origins in Nazi Vienna. Autism Awareness Month has told the story of autism as a threat to be stopped, with autism awareness campaign messages from parents, doctors, experts — everyone but autistic people themselves. They framed autism as a burden for themselves and society. This message lives on, but as with other forms of prejudice, it is now conveyed in more coded language, pushing for “research into the causes of autism” rather than “cures.”

Disabled people are no different from any other group around the world. With appropriate opportunities and supports, we are able to contribute to the economic and social well-being of [our] communities.
Judith Heumann Disability rights activist and Senior Fellow at the Ford Foundation

Decades after World War II, we are at another pivotal juncture in the making of autism’s history. An undeniable societal shift toward appreciation of diversity in its many forms is gaining steam. Of course, this didn’t happen on its own. We have many to thank — activists like Judith Heumann who have dedicated their lives to pushing for better for all of us.

We all want, need and deserve to be seen and heard, but for too long, autistic people have been spoken to and for. Partly due to advances in communication assistive technology, voices of autistic advocates and writers, like Naoki Higashida, Mel Baggs and Amy Sequenzia, are now abundant. As allies, we can amplify them.

But I ask you, those of you who are with us all day, not to stress yourselves out because of us. When you do this, it feels as if you’re denying any value at all that our lives may have — and that saps the spirit we need to soldier on. The hardest ordeal for us is the idea that we are causing grief for other people.
Naoki Higashida The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism

Enough looking back for now. Let’s look ahead, and take steps today to re-frame what is now called Autism Awareness Month. Let’s tell a new story, centered on the experiences and vast contributions of autistic people, to promote appreciation and encourage acceptance. To help people see autism and the world in a whole new way, until they grasp the truth. Just as my daughter did for me, just by being herself.

A new symbol

The puzzle piece has to go. Autistic people keep explaining that they are not enigmas. They do not have missing pieces that need to be found. They are human beings who experience and engage with the world differently. The infinity symbol is the frontrunner replacement, reflecting the incredible diversity within the autistic population, and pointing people away from narrow stereotypes.

A new color

No more lighting it up blue, due to ties to the troubling legacy of “awareness.” Many autistic adults are now calling for gold. Au is the chemical symbol for gold, and the first two letters in “autism.” And gold is undeniably valuable, making it compatible with autistic pride. Another possibility is red — some autistic people are using the hashtag #RedInstead to spark change.

Image credit: W.W. Norton & Company Inc.
Image credit: W.W. Norton & Company Inc.
Image credit: Penguin Random House
Image credit: Penguin Random House

A new focus

Hand flapping is a common behavior of autistic people. Often, it’s a way to express joy or self-regulate. It hurts no one and helps many. Yet to this day, a constant demand for “quiet hands” has been a standard part of therapy for autistic children. So I am always happy to see changing attitudes reflected in my favorite autism-related Facebook groups. One mom commented, “I won’t change my child for the world, but I will change the world for my child.” Yes.

Instead of “normalizing” autistic people, and instead of spreading awareness of autism as if it’s a life-threatening disease like cancer, let’s focus on the imperative of acceptance. No more treatments intended to encourage conformity to a neurotypical norm. Let’s all work to understand the strengths and challenges of autism, shared by those who live it, and provide support where needed and wanted.

A new respect

As many in the autistic community repeatedly tell all who will listen (and sadly some who won’t), we should assume competence and stop trying to change who autistic children are. It’s harrowing to think of 40 hours per week of therapy for small children. Or a non-verbal, intelligent autistic teen forced to point at preschool-level flashcards because his motor skills weren’t able to reflect his thinking, and therapists weren’t open to picking up on the many other forms of communication.

For so long, allistic people have imposed their vision rather than following the lead of autistic people. Autism Acceptance Month is a healthy alternative proposed by autistic people, and it should be led by autistic people. Parents like myself who are not diagnosed as autistic (though many of us likely qualify without realizing it…) can be strong allies. But not leaders.

A new paradigm

Neurodiversity is the framing we need. It’s the idea that neurological differences such as autism, dyslexia and ADHD are normal variations in the human genome. It’s the story of human history. Without neurodiversity, we wouldn’t have many of the advancements and ideas that have propelled us through the ages. We would be more limited. Less vibrant.

Progress is slow, but it’s very real. Autistic voices are being heard as they push back against damaging messages and treatments. Recently, Amazon pulled books promoting dangerous, false “cures” for autism. More and more, science and experience show us that different ways of thinking are not only incredibly valuable, but absolutely essential.

We’re waking up and realizing that humankind needs all types of brains to solve the challenges we face, to innovate and imagine better, and to thrive. That’s the kind of awareness we need.

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