by Eric Garcia
“Looking back, had I known I was autistic at the time, I would’ve probably chosen to go to the community college nearby in Bremerton while living at home,” Aria told me in an e-mail. At college Aria said she became “horribly depressed and suicidal and self-medicating all the time,” so she quit school, fearing she was wasting her parents’ money.
Aria, who is now married and has children, seems like someone who would be high-functioning by society’s measurements, while Hari Srinivasan is someone the world would perceive as low-functioning because he cannot speak. When he was young, he was even subjected to applied behavior analysis—a type of treatment for autistic people focused on improving communication and social skills. He was not “succeeding” in it, so he was moved to a special education school in middle school. Since then, he’s become an accomplished writer at his campus newspaper as well as a poet.
But Srinivasan thrived at college while Aria did not; she was forced to figure things out alone because she did not have a diagnosis and the accompanying accommodations. So while the label high-functioning might be used as a compliment (I know people have called me that in the past), it winds up delegitimizing the needs of autistic people who can pass.
Finn Gardiner, an autistic advocate based in Massachusetts, admitted his past experiences using accommodations shaped his reluctance to ask for them. Like Aria, Gardiner dropped out of a small Christian liberal arts college after experiencing what he said were instances of racism and a lack of understanding about disability.
Gardiner, who is both queer and transgender, was also estranged from his parents, which led to struggles with homelessness and poverty. But when he moved to San Francisco, he found a transitional living program for runaway youth that helped with education and employment.
“I had things like check-ins, and they would support students with things like books and registering for classes. That support was both from them and professors who were incredibly dedicated to making sure I got through,” Gardiner recalled. After graduating from City College of San Francisco, Gardiner earned his bachelor’s degree from Tufts University in Massachusetts and later his master’s degree in public policy from Brandeis University’s Heller School. He now works at Lurie Institute for Disability Policy at Brandeis.
Having professors and faculty that adequately support students is necessary for any autistic person looking for guidance. For example, there’s Lydia Brown, who rose to prominence writing the blog the Autistic Hoya while a student at Georgetown University. Brown (whose preferred pronouns are they and them) taught a class at Tufts University and said they made an effort to ensure the class was as accessible as possible for disabled and autistic students.
“I set very clear and specific deadlines for each of the papers and projects so that students who are very structure-oriented and deadline-oriented would have a clear set of feasible deadlines to complete all the assignments of the class,” Brown told me over lunch at a restaurant in Washington, DC. The major difference between Brown’s and other classes, though, is that there was no such thing as late work.
“So if you can’t finish by this deadline, all that you have to do is tell me when you think you will get it done by, and that’s your new deadline,” Brown said. “What’s worse for many autistic people who make it to higher education is that people who managed to get the higher education tend to be the autistic people that were told ‘You’re smart and you’re good at school,’ and then they fall apart in school, and then no one believes you because they’re like, ‘Well, you’re smart. You’re not really struggling, you’re just being lazy and you’re making excuses, you’re not trying hard enough.’”
This makes an understanding and empathetic faculty all the more necessary. For me, one such professor was Ferrel Guillory, a man in his sixties with only a few wisps of snow-white hair left on the top of his head who always wore an immaculate dress shirt and reading glasses and who carried traces of an accent from his native Louisiana. Professor Guillory was an elder statesman of political journalism in North Carolina who taught a class on Southern politics. I wanted to impress him, but I tanked my first column for his class, as I’d had trouble grasping the abstract concepts that came with writing a column and could not nail down a specific topic. I felt like a failure.
But a few days later, Professor Guillory invited me to his office, and after closing his door, he asked me, “Do you have Asperger’s?” I remember thinking, What gives you the right to ask me such a personal question? But instead, I said, “How did you know?” He said he knew people on the spectrum and had decided he would help me whittle down my ideas on a weekly basis to ensure my writing would be a finely sharpened weapon. I felt completely naked and exposed, as if my worst secret had come to light and I could no longer hide, but I also felt relieved. At that point, I didn’t care if Professor Guillory’s question was appropriate; he was saving my ass, and with his help, I learned how to write better analytical pieces. And God bless him for that.
Gardiner, Srinivasan, and I are all lucky that we had people in our academic careers who were understanding and willing to give us assistance, even if they did not always fully grasp the intricacies of autism. More important, none of us “overcame” our autism or our disabilities. Late disability rights activist Stella Young dubbed these “inspirational” stories about autistic people “inspiration porn” because they are meant to make able-bodied and -minded people feel better about themselves.
The three of us succeeded because there were systems in place that enabled us to succeed. To be inspirational means to be exceptional and somehow extraordinary, but to be successful because of supports and accommodations is to universalize our success. It is to say that other autistic people can do these same things if they have the same resources—thus, we can make the extraordinary just ordinary.
Alternative Approaches
While many colleges and universities are still trying to figure out how to accommodate autistic students using existing disability services frameworks, some are trying to tailor specific programs for autistic people and make an accessible campus. Back at Marshall University, the autism training center provides education for the faculty, staff, and students as well as local employers about autism through its Allies Supporting Autism Spectrum Diversity program. Rebecca Hansen, the director of campus-based services, told me that the program is an hour long and includes a slideshow with an autistic woman student, which helps to counteract the common stereotype that autism occurs only in boys.
“The allies’ training has been a really big benefit to helping other people understand the best ways in which to embrace folks on the spectrum so it’s not seen as something that can be stigmatizing but more so welcomed and another part of who someone is,” Hansen told me in an interview. But Hansen also said getting the proper training for faculty can be a way to better assist autistic people in asking for accommodations when they need them. “We want to eliminate that kind of embarrassment by helping professors understand that these are typical supports.”
Hansen said many of the education accommodations requested by autistic students relate to executive functioning.
A lack of executive functioning, in layman’s terms, means difficulty in planning and carrying out complex tasks. It’s why some autistic people can be extremely intelligent, whether or not they can speak, but struggle immensely with applying knowledge. That sounds like a cheap excuse for laziness. But for many autistic people, it just doesn’t come naturally. It wasn’t until I learned about executive functioning that I understood why I could memorize all of my notes for class but allow menial tasks like taking out the trash, cleaning my room, and picking up dry-cleaning to go unaddressed for weeks on end. It’s not that I liked living messily. I knew I needed to address these things. I just didn’t have the natural wherewithal to plan or even to ask for help. This is the case with many of the students at Marshall, Hansen told me.
“A student may struggle with getting to class on time because of a variety of thin
gs. It could be anything from a change in the weather pattern; it could be a change in sleep patterns; it could be a challenge with medication routines; it could be that they overslept just like anyone else,” she said. Hansen added that was why the program helped faculty realize that “it is not a sign of disrespect” if autistic students miss class or struggle with other tasks.
In addition to offering academic support, the center at Marshall teaches “adaptive living skills” to help students navigate independent living on campus. A skills-building group helps autistic people work on things like time management, developing a “social radar” to interact with classmates, building a reputation on campus, and stress and anger management. All the while, students are fully integrated into the campus. The environmental science major Richie Combs told me that while he usually only needs accommodations in class for extended time on tests, he has also had help with planning.
“I’m usually pretty good at knowing what I have to do. It’s just a matter of doing it,” Richie told me. The center sends him reminders about upcoming assignments or exams, something that can be helpful for autistic people who have difficulty with time management or setting schedules.
Richie also praised the Discovery Groups at the center, which Marshall’s website describes as a program to help autistic students navigate campus; these groups help students with time management, executive functioning, conflict management, and handling stress and anxiety.
But for all of the good that the program does, there might be some parts of the discovery groups that are concerning, and there is also a risk that they could be aimed at changing who the autistic person is. For example, one discovery group is called Developing a Social Radar, and it focuses on undersharing versus oversharing and how both can be either beneficial or detrimental to interpersonal relationships. But while autistic people may benefit from learning interpersonal skills, programs like this put the onus on autistic people to fix their problems rather than on the people around them to be more empathetic.
And while many of these programs can be beneficial, they have a steep price tag. Marshall’s, for example, is five thousand dollars per semester as of 2020. Hansen said many students receive assistance for the program through scholarships and West Virginia’s Division of Rehabilitation Services. But that assistance is largely dependent on state funding. In 2017, the year before we spoke, Hansen said twenty-three out of the program’s fifty students used vocational rehabilitation money.
“They had a major budget cut since then,” Hansen said. “So it’s harder to get those funds at this point, although it’s possible. It’s just a matter of justifying it and applying early.”
On the other side of the country, Bellevue College, a community college located near Seattle, takes a different approach. Sara Gardner, the director of the Neurodiversity Navigators program, is autistic and has an autistic son. Gardner said it was important that the program not try to change who autistic people are.
“A lot of other programs are trying to turn autistic students into human beings rather than starting from the premise that they already are,” Gardner told me. Gardner said the Navigators program focuses on helping students develop an identity, so they learn who they are as autistic people. Gardner said autistic students are often denied this right from kindergarten through high school. Autistic students don’t pay any additional fees for the program other than tuition.
Much like Marshall’s program, Bellevue’s has credit classes that help autistic students navigate school. Some of the topics overlap with Marshall’s, like executive functioning and interpersonal communication. But other subjects at Bellevue include navigating college and a career, self-community and advocacy, and occupational wellness. The Bellevue program is modeled on the “social model” of disability, a response to the “medical model” that sees disability as something that needs to be fixed. By contrast, the social model of disability argues that the biggest obstacle to disability is a world around disabled people that does not accommodate them.
For my own part, I know that when I was in school, once I came to accept that I was disabled, it didn’t make me want to work any less hard. Instead, it made me aware of my weaknesses and allowed me to plan accordingly. I was willing to go to my professors’ office hours for extra help, especially in classes where I struggled, like psychology and computer coding.
Life Outside the Classroom
I felt a sense of accomplishment for surviving my first year at UNC, but I also felt lonely. I was technically a sophomore, but I had moved into the freshman dorms my first year, and as a result, I had little in common with my peers. I was living in a new state where I didn’t have any family or friends, which only added to that social isolation.
Loneliness is a common experience for many autistic people. A 2017 study from the Journal of Autism and Developmental Disorders found that for most autistic college students, the major problem wasn’t the academics but the on-campus aspects of college life. “Over three quarters of the students reported regular struggles with feelings of isolation, being left out, and lacking companionship,” the study said. Autistic students had an alarmingly high risk of suicide, with nearly three-quarters of participants saying they “had some form of suicidal behavior over their lifetime,” 40 percent of them reporting having made suicidal plans, and 14.6 percent attempting suicide.
To counteract that loneliness, I made the decision to get involved and join a social group. After realizing I did not really belong to either political party and life as a partisan Democrat or Republican was not for me, I decided to return to my first passion, journalism. I signed up to work for the state and national politics desk of the Daily Tar Heel, the campus newspaper. It was the fall of 2012, during the presidential campaign between Barack Obama and Mitt Romney, both of whom were making a play for North Carolina. As a test to show I could be unbiased, I readily signed up to cover the North Carolina GOP’s election-night party in Raleigh with a few other cub reporters, including Amanda Albright, who would later become a dear friend.
The whole night was exhilarating. In the reception room with a cash bar of some middle-grade hotel in downtown Raleigh, me, my colleague Jacob Rosenberg, and Jeff Kagan swarmed around the hall mining for quotes from Republicans about higher-education policy to feed back to Amanda, who was writing the main story. At one point, one of us broke the news to one candidate (who was already pretty buzzed) that he’d lost his race, to which he replied, “Holy shit, I lost.” You could almost see his soul leave his body.
Later on, Jeff and I were tasked with finding Paul Newby, the head of the state supreme court, so we scoured the building until we found him outside his hotel room. We started asking him questions as he was checking his phone for results and he was polite but short with us. I and noticed he had an Eagle Scout lapel pin, so I immediately asked him about it and stretched out my left hand (a greeting among former Boy Scouts). Shortly afterward, he invited us into his hotel room, so Jeff and I were in the room with him when he learned he’d won his race. We got the quotes we needed and sent them down to Amanda. That night, despite Obama handily winning a second term, Republicans cleaned up in the state.
As we were walking out, we saw a trash can full of Mitt Romney signs, so I swiped one as a memento of my first election night. Afterward, we went to Cookout and got burgers and Cokes and celebrated the end of our first long election night. As I was going home, my legs almost gave out, and I conked out as soon as I got in bed, but I knew I was going to be covering politics for the rest of my life.
But more than that, I had found a friend group, people who were hungry for stories, followed politics ravenously, and would take whatever ethical measures necessary to get the story, and my love of politics and news made me an asset among them. (Some—like Amanda and Jacob—have had accomplished journalism careers themselves since then.) We could speak a similar language. I now had something to look forward to after my classes and homework (or, honestly, I had an excuse to avoid them), since I could j
ust go to the DTH, get a story assignment, and be off and running. Not to mention when I got a good story that was on the front page, I would get praised. I had a home now.
Many of my friends from the paper are still my friends today. Maddy Will, the assistant editor on the politics desk, arrived in DC shortly before me. Dan Wiser, a reserved establishment conservative who was Maddy’s superior when I joined, was my roommate one summer when we were interns in DC. My friend Mary Tyler March (yes, she’s a journalist and she was named for Mary Tyler Moore) and I have been colleagues on two occasions: once at the DTH and another time as editors at the Hill. My former colleagues Sarah Brown and Dan Schere and so many others remain incredibly vital to me. The DTH gave me these people, and their bonds and ties will endure long after the ink fades and the old print pages turn yellow.
Not Leaving Others Behind
For many autistic people, college is simply not a viable option or there have yet to be environments built for them that are empathetic to their needs. Despite all the strides that have been made toward accommodating autistic people in higher education, for many, the institutional barriers are still too difficult to overcome.
Anyone who follows Andrew Savicki on Twitter under the handle @SenhorRaposa knows he is one of the best political prognosticators in the country. In March of 2018, Savicki wrote that one “hot seat” House race to watch during that year’s midterm election was Oklahoma’s Fifth District, labeling it a toss-up and saying that Democrat Kendra Horn could win. Major prognosticators all rated the seat as secure for Republicans. But Savicki argued it was “much more competitive than it initially appears.” On election night 2018, Horn proved Savicki right. But despite his political wherewithal, Savicki, who was diagnosed in 2015, has been unable to graduate college because of his trouble in math classes. “No matter how much tutoring I get, I can’t advance any further until I get those math classes done. So, I’m just stuck in a never-ending loop unable to go forward,” Savicki told me.