MAC creates spaces for students with autism, centers neurodiversity

Jennifer Katz

When Rob Stokes ’20 first arrived at Macalester, he didn’t tell anyone that he was on the autism spectrum.

“When I got here my freshman year — first off, I knew nobody, and I knew nobody who was like me,” Stokes said. “It’s difficult being isolated and alone and not having people to relate to.”

Now, as a junior, Stokes and other students with autism have founded Mac Autism Community (MAC). They hope that the org will foster community among autistic students.

“One day I just decided to look at the student org list, and there was nothing that had any aspect of neurodiversity,” Stokes said. “There’s a lot of other diversities and cultural stuff. [MAC] should exist here.”

Celebrating neurodiversity is one of MAC’s main goals. According to the Center for Disease Control and Prevention, autism spectrum disorders encompass a wide variety of neurological conditions “causing problems in social interaction and communication.” They can manifest in a variety of ways, including “limited and repetitive patterns of behavior” and heightened sensitivity to sensory stimulation.

In the fall of 2018, Stokes began discussing founding an organization for students on the autism spectrum with Director of Disability Services Melissa Fletcher and Disability Services Coordinator Josie Hurka.

Fletcher and Hurka helped create a similar student group at Concordia University in St. Paul, where they both worked before coming to Macalester. “[At Concordia,] we were working individually with students on the spectrum and the students were having feelings of isolation,” Hurka said. “They really, really wanted to have those friendships and relationships but had a hard time connecting. So we had this introduction to get these students together and see where it goes.”

Fletcher said that her role at Concordia was more hands-on than it is here.

“At Macalester, the students are really taking the lead,” Fletcher said. “They’re developing the structure and how they want this to move forward.” Stokes connected with fellow MAC leaders Dylan Larsen ’20 and Jennings Mergenthal ’21 to shape the org. Larsen is also active in the Disability, Chronic Pain and Chronic Illness identity collective and the student organization Voices on Mental Health, but felt that neither was a good fit for discussions of autism and neurodiversity.

Once they connected, the three worked together to discuss plans for what would become MAC.

MAC held its first meeting on March 12. Attendance far exceeded their expectations; the meeting drew 10 people — enough to be chartered as a student organization. Larsen, Mergenthal and Stokes presented MAC’s charter to Macalester College Student Government for approval on March 26, and have since been officially chartered.

For Mergenthal, MAC is a space where they feel free from “performing” as a neurotypical person.

“It’s a very constantly performative thing,” Mergenthal said of their experience as a person with autism on campus. “That’s part of why it’s so draining because you are acting a character and doing things you wouldn’t do.”

As a means of explaining the exhaustion of performing a more normative level of social functionality, Mergenthal gave the example of their response to the homophobic “discount Westboro Baptist Church” religious protestors who picketed on campus on February 18.

“I went out with a puppet and I did a voice and I did a persona and I was a puppet for 45 minutes!” they said, imitating their puppet Lester’s gruff voice. “The puppet was high-fiving people and he was having a great time, and afterward I was so tired because, like performing normally, I was playing a character that I am not.

“It was fine to do that in that context because it was a conscious choice to do that. I had the forethought to do so,” Mergenthal continued. “It was an active event, not a passive thing that was happening. But when you have to do that in day-to-day life, that’s when it becomes a constant drain.”

At their meetings thus far, Stokes noticed that students have embraced the freedom of existing in a space where they won’t be judged for their communication styles, whether that means fidgeting with a Rubik’s Cube or avoiding eye contact while speaking.

“I didn’t feel like it was an issue,” Stokes said. “Everybody here is working like that. I haven’t been in a room with that many people on the spectrum ever in my life. It was an amazing feeling to have.”

The leaders’ goals for the group go beyond providing a forum for students on the autism spectrum, though. Stokes hopes to create more open discourse about neurodiversity in the wider Macalester campus.

“I wish I could bring up [autism] in class and not feel weird about it and not have my heart race,” he said. “I don’t think people know how to talk about autism on campus or in general. I think a lot of people are worried that they’ll say something that we’re not going to like, or somebody will say [to them], ‘Oh, that’s really bad.’”

That ignorance has caused academic challenges for Larsen because of the way that he processes and conveys information.

“There’s more than one way to take in information and also more than one way to express that you’ve learned, beyond the standard essays and tests,” Larsen said. “It seems like only a few faculty realize that that’s a thing.”

More open discussion of the broad spectrum of neurodiversity could even lead to more students discovering their own place on the spectrum. Fletcher says that while Disability Services currently serves fewer than 20 students with autism, there are likely more autistic students who they may not be aware of or who just don’t interact with Disability Services.

MAC has already planned several awareness events for the coming fall, including a screening of the 1988 film “Rain Man” to analyze misconceptions of autism in media. They are also planning a campaign to accompany the Laurie Hamre Health and Wellness Center’s fall flu shot drive dispelling pernicious myths connecting vaccines and autism.

Stokes’s aspirations for MAC go beyond awareness, though.

“I’d like something more like autism acceptance,” he said. “Something like, ‘We see you, we value you, we understand your differences and we applaud them and celebrate them.’”