A few years ago, professor and researcher Emily Rothman’s daughter received an autism diagnosis, and Rothman, an expert in public health, found herself having to learn a lot about autism quickly.
“I realized that there was a serious problem in terms of there being far too few healthy relationships type of programs that were designed for teenagers and adults on the spectrum,” Rothman said in an interview with Rewire News Group.
Rothman set out to solve that problem, but she did so with a key tenet of disability justice in mind—she “did not want to design a program for autistic people unless they were partners,” she said. So in partnership with the Asperger/Autism Network (AANE), she developed a course by and for autistic young people and adults.
As a disabled journalist, I was immediately interested when I heard of Rothman’s course on autism and interpersonal relationships.
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“Nothing about us without us,” is a rallying cry in the disability community. But in my experience it’s rarely a reality, especially in the spaces we share with able-bodied people—spaces like academia and the workforce. Able-bodied journalists cover issues of disability justice from the outside looking in. In school, the education about and treatment of disability is largely helmed by able-bodied administrators and teachers. It’s far too common, as a disabled person, to feel shut out of the decisions and conversations about our lived experiences, both on a personal and political level.
One common concern among autistic people and disabled people in general is that we will be infantilized when able-bodied and neurotypical people lead our conversations. A simple solution to this is to give disabled people the mic—give us control over the things that affect our lives. And that’s what Rothman’s class does.
Last year, Rothman attended an AANE talk about relationships with Karen Lean, an autistic board member and volunteer with the organization. “She liked what I had to say, so she asked if I would co-facilitate the workshop,” Lean said.
What it means to have an autistic instructor
I had the privilege of sitting in on one of the class sessions last month and found it heartening to watch a conversation about disability led by someone from our community. Lean leads class discussions, while Rothman monitors a Zoom chat room where students can engage by typing responses to one another. As students discussed relationships with their families and friends, I recognized a closeness and comfort that I have only felt with other people who share my disability—there’s an immediate understanding and safety in disclosing to someone who you know understands your lived experience on a personal level. What Rothman and Lean have done is take that principle and bring it into the classroom.
These efforts have paid off. I spoke to a number of students who provided anonymous feedback about the class, many of whom found the course through AANE, and they had nothing but positive things to say about what the class offered.
One student said they had gotten tools out of the class that they hoped to use in the future. Students also spoke about what it means to have an autistic person leading the class.
Having an autistic instructor “creates an environment in which people are more open and comfortable, and this I appreciate because to some extent I feel like I’ve learned more listening to others’ stories than the content of the class,” one student said. “In the stories, I’ve recognized some of my past and present experiences, struggles, and similar. In this way the class has helped significantly as I feel more connected to (at least some) people than I have in quite a while.”
Lean echoed this enthusiasm for having the class led by someone in the autism community.
“When it’s led by someone autistic, I think a class like this can form a community in a way that if it was a allistic (neurotypical) teaching to autistic people, it wouldn’t work as well, perhaps because the material would be coming from someone the students trusted less, or felt perhaps that the teacher didn’t really understand their experiences,” Lean said. “I’m not just sharing the material because that’s what’s on the slides—I have personal experiences with losing friendships and being confused about it, or difficulty with boundaries or making new friends, and what was challenging about that.”
Promising results so far
Before sitting in on the class, I chatted with Rothman about what to expect. She mentioned that autistic people often have trauma due to being placed in courses centered on behavior modification that force them to abide by neurotypical standards. It was important to her that this class be different.
“The most important thing about this class is that it’s not coming from the perspective that there is something wrong with how autistic people communicate or socialize,” Rothman said. “It’s coming from the perspective that some people are different, and different is more than OK—it actually strengthens our society—and that autistic people can use support dealing with a world that can be quite harsh about their differences.”
Rothman said she’s seen students in the class have “aha” moments about everything from dating to rekindling friendships. In addition to approaching the class as an instructor, Rothman also engages as a researcher, collecting data on the success and impact of the class. She said the results so far are promising—students report that they feel better, know more, and are socializing differently after participating in the class.
Rothman’s hope is that the class one day be turned over to autistic teachers entirely, yet another clear indication of Rothman’s commitment to “nothing about us, without us.”
“I trust my autistic co-teachers and partners entirely to do a stand-out job teaching the class, with high fidelity to our original model, going forward,” Rothman said.
Lean points out that many non-autistic people could benefit from a course like this, and that while this course is about helping autistic people build healthy relationships, it’s just as much about recognizing when non-autistic people aren’t engaging in healthy behaviors themselves.
“I’d really like the world to see autistic people as the highly sensitive and thoughtful people we are, as people who want social connection, and who can thrive in supportive relationships with people who don’t make assumptions about our behaviors and thoughts,” Lean said.