Puzzling Motives: rethinking autism ‘awareness’

By April 16, 2019 One Comment

By Jessica Semler
Pittsburgh Current Columnist

 We all know the familiar pattern of checking out at a store and getting asked by a cashier to donate a small amount to a charity or foundation.

“Would you like to donate a dollar to cervical cancer awareness?” Sure. “Round up to the next dollar to end hunger?” I mean, of course. I don’t mind donating a small amount to a good cause. Especially when I’m checking out at Target.

“No, I don’t want to give a dollar, just ring me up for that footstool (which I needed!) and this oil diffuser, cat socks, jelly face mask (whatever that is) and a fuzzy phone charger (okay I didn’t need these).” But why not? That small amount is going to a good cause, right?

The problem is, sometimes it doesn’t.

A few days ago I had the exact scenario above play out at a TJ Maxx. As the cashier was ringing up my one essential item and the rest of my impulse buys, she said, “April is Autism Awareness Month. Would you like to donate to Autism Speaks?” I told her, “no.” As I was grabbing my shopping bag, I fumbled some words about how I had some autistic friends explain to me that Autism Speaks, the organization identified by a blue puzzle piece logo, is actually widely abhorred by autistic people.

Less than an hour later, I was at Panera, and a large banner with pictures of cookies with blue puzzled pieces was on display. Damn, Autism Speaks really dominates the conversation, and the donation dollars when it comes to autism.

It sounds great to donate to an organization helping out autistic folks and their families, right? As a neurotypical person, I wouldn’t have given this a second thought unless I had some friends talk negatively about the organization. I did a cursory dig, and discovered that despite all of their fundraising, less than two percent of Autism Speaks’ budget goes to family services. Worse, I found that only a couple Autistic people have ever been on their board. In fact, noted Autistic advocate John Elder Robison was on their board and eventually left because he said they didn’t listen to him or other Autistic individuals, and he said he felt alienated because they continued to talk about Autism as a tragedy, a problem, and something to cure. “Autism Speaks is the only major medical or mental health nonprofit whose legitimacy is constantly challenged by a large percentage of the people affected by the condition they target,” Robinson wrote in his resignation letter to the board.

It is a red flag when any organization purports to advocate for a group that isn’t present and prominent in its leadership. Alternatively, we have an organization right here that is run by and for Autistic adults.

The Pittsburgh Center for Autistic Advocacy (PCAA) does peer support, self-advocacy training, resource coordination, legislative advocacy, and training and professional development for organizations. I spoke with Bethany Ziss, a developmental-behavioral pediatrician, disabled person, and a board member for PCAA. “A major tenet of the disability rights movement,” she explained to me “is nothing about us, without us.’ People with disabilities should be the ones most centrally involved in advocacy efforts related to disability… At the most basic level, what’s often missing is the perspective of autistic people.”

Jess Benham, an autistic woman, Director of Development for the PCAA, and a teaching Fellow at Pitt echoed this as well. “I’m tired of politicians ‘lighting it up for blue’ for a day or for the month, then not listening when I’m in their offices advocating for the issues that impact our lives. Autistic people need seats at the table where decisions are being made about us, not a month in which public figures and Autism organizations highlight negative stereotypes.”

A common theme when talking to actual autistic folks about this month, is that they’d much prefer “Autism Acceptance” or “Appreciation Month.” “Awareness” is a word we use to talk about negative things like sexual assault, domestic violence, cancer and other diseases. We shouldn’t be talking about neurodivergent people like this. It’s stigmatizing and reeks of fear mongering.

What does it look like to appreciate autistic folk rather than be aware? Ziss said that acceptance is about “how non-autistic people can better understand their autistic family members, co-workers, neighbors, and support and accommodate them.” She gave an example of the contrast.

“A poster that says ‘Lack of eye contact is a sign of autism,’ that’s awareness. What’s missing is the poster that says, ‘Eye contact can be uncomfortable or painful for autistic people. It can be very difficult for an autistic person to look and listen at the same time.’  That centers the experience of the autistic person. The problem isn’t the lack of eye contact, but that eye contact is expected even though it causes distress and problems.”

The final person I wanted to hear from is Cori Frazer, PCAA Executive Director and licensed social worker. I asked how they felt about Autism Awareness Month. “It’s ironic, because running an Autistic-led organization, April is a great time for PR, but it’s painful. There is just no other time of the year when the misinformation is so loud or so ubiquitous.” In terms of how PCAA reframes this, Frazer said. “We’ve worked hard to reclaim it as Autism Acceptance Month by running events reframing the issue. Like everyone is aware of this big blue puzzley terror, but what if we teach folks what autism is and how to make the world a better place to navigate for Autistic folks?”

It is important to counter the doom and gloom of Autism Speaks with positivity and affirmation.

“We need people who know how to unabashedly love their brain because young people are watching and learning how to feel about their disabilities,” Frazer said.

 I asked Ziss how to tell whether a group is worth supporting.

“In terms of alternative groups, I always ask three questions.  Who is running the group, what are their goals and what are their methods?  For disability advocacy, this means supporting groups run by and for disabled people and that don’t use language of tragedy to describe disabled lives.”

Which leads us back to the dreaded blue puzzle piece.  

“The ‘puzzle piece’ reinforces harmful narratives about Autism,” Benham says. “I’m not missing part of myself, nor is Autism holding me captive: I’m a whole human being with strengths, and yes, with weaknesses as well.”

Forget the puzzle piece. Here are a host of autism acceptance organizations you should support instead:

Autistic Women and Nonbinary Network

Autistic Self-Advocacy Network

Pittsburgh Center for Autistic Advocacy

Self Advocates United

One Comment

  • Peg says:

    My daughter is an adult autistic. She was not diagnosed until her 30’s. I knew of Autism speaks and thought they were just another organization. Then I learned more and more. They are despicable. The put on lavish events charge high prices and they do nothing but harm to the Autistic community. Thankyou for well written article.

Leave a Reply

Pin It on Pinterest