by Eric Garcia
* * *
On that February day in Pittsburgh, as Benham and I exit her car and arrive back in her office, she tells me that making history as the first autistic woman elected to a state legislator is not the goal of her campaign.
Later, as we are wrapping up the interview, I ask Benham for some general closing remarks, and she talks about why it’s important to have a legislator who is fighting for labor, infrastructure, and all the other things she supported as a community organizer before talking about being autistic.
“So, you know it’s certainly a milestone to have an openly elected autistic individual to a state legislature, but for me, that . . . it’s only a small part,” she said.
Benham again is trying to broaden her appeal, which is understandable. It is the same thing many politicians who are part of a minority group do, an attempt to emphasize what they have in common with their constituents. Even if they require extra assistance, autistic people are entitled to campaign the same way as other politicians.
For all my excitement at the feeling that Benham could be knocking down barriers, I’ve also recognize a soothing sameness throughout Benham’s and my time together. I’ve followed candidates campaigning in the past, been to countless political-party and interest-group functions, and seen plenty of politicians press the flesh while I stand on the side with my notepad or sit at a rickety table with my laptop. There is something relieving to me that Benham and I are both members of this Spectrum Generation and we have the opportunity to be judged by our merits, not our autism. People can choose to vote for Benham or her opponent. Readers can think I am an honest broker or a fake-news hack. Either way, we want to be measured by the same metrics every other politician or journalist is measured by.
Later that day, as I am heading to the airport to catch a flight back to Washington, I check the Steel City Stonewall Democrats’ endorsement results on Twitter. Benham has won their endorsement.
A few months later, she won her election.
2
“In My Mind, I’m Going to Carolina”
* * *
Education
Huntington, West Virginia, is near the border of Ohio and Kentucky. To get there the Sunday after Thanksgiving in 2018, I flew from Washington to Charlotte and then to the Tri-State Airport. My ride from the airport was filled with scenic views of mountains that kiss the sky. Weeks after the 2018 midterm elections, I joked with one of my Lyft drivers that I was the only political reporter who was not there to cover the election. And I certainly wasn’t there to write one of those god-awful “Trump Country” profiles about “forgotten voters” in Appalachia.
National political reporters who cover West Virginia usually write about the decline of the coal industry, the gripping poverty, or the opioid epidemic that has ravaged the state (at one point leading to 41.5 deaths per 100,000 people). These were usually the rationales given for why the state had shifted from voting for Democrats in the twentieth century to voting overwhelmingly for Donald Trump in 2016. Hence I was puzzled when I was interviewing someone at the University of Alabama about its autism students’ program, and Megan Davis, the director of UA-ACTS, mentioned they had modeled their program after Marshall University’s in West Virginia.
I later learned that this program was one of the first in the country, and West Virginia’s leading role in autism history was largely thanks to Ruth Christ Sullivan, the cofounder of the National Society for Autistic Children (later the Autism Society of America). While Bernard Rimland was largely focused on searching for a cure for autism through various remedies, Sullivan was focused on fighting for services for children like her son Joe, who would serve as one of three inspirations for Raymond Babbitt in the movie Rain Man. When Sullivan relocated to Huntington, she started NSAC’s Information and Referral Service, which helped parents find resources for their kids, out of her home. West Virginia was also the first state to specifically include autism in its special education laws.
In 1984, Sullivan led efforts to create the West Virginia Autism Training Center at Marshall University to serve families of autistic people throughout the state. In 2002, it began offering services for autistic students through its College Program for Students with Autism Spectrum Disorder.
The program office is located on the third floor of Marshall’s Old Main Suite building, the oldest building on the university’s campus. I had organized a trip there and the program’s team agreed to set me up with a handful of students to interview about their experiences as the semester was closing. While there, I met Richie Combs, who was in his final year of college studying environmental science. Combs told me that he benefited from receiving extra time on his tests and having advisers at the center speak to professors on his behalf when he was overwhelmed. Zachariah Lewis, who was graduating that December with a major in history and a minor in psychology, said one of the best things about the center was how it gave him the ability for him to be himself. “It encourages a sense of solidarity [and] camaraderie,” he said, noting that he was able to engage with people from all different parts of the country—and the world—and make lasting friendships.
These students were more accepting of their autism than I was at their age. The changes that have occurred in both policy and diagnostic criteria mean that college has become a possibility for countless autistic people who were previously thought incapable of matriculating. Though, in truth, plenty of autistic people have gone to college; unfortunately, many did not realize they were autistic or they were misdiagnosed, and as a result, they struggled to get through school. Others were seen as incapable of any type of adult life, so college was not seen as an option. Nowadays, many autistic students still deal with a lack of accommodations, internalized ableism, and difficulty navigating the social aspects of college.
Academic Accommodations
In my senior year of high school, I was living with my mom and my sister in California. My mom proposed I attend a community college before going to a university to test my independence. I think she was concerned that I would have difficulty with executive functioning and carrying out independent tasks while balancing a full academic workload. Going to a community college could be a bridge between the more routine schedule of high school and being thrown straight into college life. I was reluctant because I saw community college as “high school with ashtrays.”
I wanted to go to a local university, California Polytechnic University, which was where my guitar teacher JohnPaul Trotter had gone; I wanted to get a degree that would help me become a journalist and then find a way to write about either music or politics. Part of me still aspired to be a professional musician, and journalism was a contingency plan. But I was terrible at managing my time and always procrastinated until the last minute for nearly everything. It finally came back to bite me when I missed the application deadline to apply for California public universities because I put off asking my mom what my Social Security number was and then, after I finally worked up the courage to do that, I was too frozen with anxiety to ask her for the application fee. Thus, I had no option but to enroll at Chaffey College.
Looking back, I now know that community college should not be a source of shame. In truth, I learned and grew a lot at Chaffey. Throughout high school, I was relatively smart but had little work ethic and thought I was a bit above everyone else, despite the fact that I never took AP classes and regularly struggled with math. I could score As and Bs pretty easily in other subjects because I could absorb things quickly. At Chaffey, I gained much-needed discipline. I went to the tutoring center daily to work, developed smart study habits, learned to ask my professors for help, and prioritized studying.
And it paid off. My Middle East history professor Tim Greene inspired me to want to learn Arabic, which later ignited my temporary desire to be a war correspondent (much to my mom’s horror). Plenty of the professors there were attentive to students’ needs and held frequent office hours. My fellow classmates were people coming back from military service, peopl
e who’d gotten hit hard by the economic downturn of 2008, and moms whose kids had grown up so they finally had the chance to get an education of their own. They were and are good people, and community colleges are a vital lifeline for many.
Autistic students are about twice as likely to enroll in a community college than in a university, according to a May 2014 study in the Journal of Autism and Developmental Disorders, which found that 81 percent of college students with ASD were enrolled in community college at some point after secondary school. But the authors also found that students who studied science, technology, engineering, and mathematics (STEM) were twice as likely to transfer to a four-year university than those who studied non-STEM subjects. At the time, I didn’t know that, but it is easy to feel that autistic people who don’t want to pursue these subjects aren’t treated with the same priority. It is good that autistic people have a means to pursue a bachelor’s degree, but this dichotomy abandons far too many autistic people.
Another huge benefit of community college for me was that it gave me time to shed my dislike of asking for disability accommodations. In the classroom, some common accommodations are extra time to take tests and isolated areas in which to take them so the student is not too overwhelmed by surroundings. I loathe the term special needs because it implies that disabled people are getting preferential treatment rather than the assistance that is their right. At Chaffey, I initially felt guilty asking for accommodations, since the mere fact that I was a student made me question whether I deserved accommodation services in the first place. Plenty of disabled people don’t make it to college, so I felt I must not be truly disabled if I was there. I also worried that people would think I was “taking advantage of the system” or put an asterisk next to my success.
Swallowing my pride was a major source of tension between me and my mom when I was at Chaffey. I eventually relented when my mom visited the school’s offices to ensure I got services. She insisted that they were there for a reason: to make sure disabled students got fair treatment. I ended up getting extra time on my math tests in a separate, quiet space. And thanks to this accommodation, I eventually did well enough to get into the honors program at Chaffey, which allowed me to take accelerated classes and put me on a fast track to a four-year university.
Ironically, when I called to enroll in the honors program, they said they didn’t know how to handle my disability services because they couldn’t recall ever having a student with accommodations in the program before. So often, if disabled people somehow succeed, either our disabilities or our accommodations are questioned.
Timotheus Gordon also had a complicated experience with accommodations. He told me that in high school, he felt that they were more of an impediment than a service. But when Gordon was at the Savannah College of Art and Design earning his master’s degree, he struggled with writing graduate-level essays. He finally met with his teacher when he was at the point of failing a class in his first semester. That teacher suggested he get more time on tests and get counseling services, an offer that Gordon at first rebuffed. He did not want his education to “feel remedial,” he said, adding that he’d already been through that as a child. But now his success was on the line.
“I didn’t want to fail,” Gordon said. “So that’s when I finally swallowed my pride and got some time on my tests.”
M. Remi Yergeau, an associate professor of English at the University of Michigan, was diagnosed as autistic while in college and told me they had a similar experience with accommodations. “There’s this element of disbelief or a tendency to see students as whiners, as being overly sensitive, as not wanting to deal with hard problems,” they said. “It’s rage-making . . . for a lot of disability activists and academics who are disabled or do disability studies.”
This general distrust makes the few professors who understand disability accommodations extremely refreshing. When I first disclosed to my cinema professor at Chaffey that I was autistic, he was incredibly empathetic. He never specifically singled me out in the class or made things easier on me, but it led me to trust him and I wasn’t afraid to go up to him when I had a question about classwork.
Community college is a stepping-stone for many autistic students on their way to a four-year university, myself included. Hari Srinivasan, who was one of the first nonspeaking autistic people to be admitted to the University of California, Berkeley, attended San Jose City College.
“The smaller nature of a community college meant that my counselor knew most of the instructors, and would steer me towards courses that had more understanding instructors which makes a huge difference in your college experience,” Srinivasan told me in an e-mail. “This is not something you can ask for in writing.”
When I was enrolled in the honors program at Chaffey, I started looking at colleges with good journalism programs and saw that two of the best public universities for journalism were the University of Florida and the University of North Carolina at Chapel Hill. I hated humidity, so I figured it would be better to go to North Carolina (I didn’t know that North Carolina also got humid in the summer). After I got in and learned I’d received enough financial aid, my dad helped me move to Chapel Hill. We met with my academic adviser and found all the important routes to get to class but visiting disability services was not on our agenda. Maybe we forgot, or maybe we thought it was unnecessary. In hindsight, I’d postulate a third reason: I felt I had made it as a college student. I saw my autism as something I had conquered and overcome, now that I was enrolled at a prestigious four-year university. It would take time and a few close calls before I accepted the truth—that autism is part of who I am.
Much like the anxieties I had at Chaffey, I felt that if I used special accommodations at UNC, I was somehow cheating. I saw people in my classes busting their asses in the library, and I feared I would be taking a shortcut if I got help that I felt I didn’t “really need.”
My assumptions would be shattered roughly two months into my time at UNC during an exam for my African music class when all the answers somehow evaporated from my memory. In an act of desperation, I walked up to my professor’s office after the test. Shaking, I told him that I was autistic. I don’t remember what I said verbatim, but I explained I sometimes had trouble comprehending abstract ideas and taking tests in “normal” academic settings where I was timed. I feared he would think I was making up an excuse for doing poorly. Instead, he immediately called the student learning center and set me up with Dr. Theresa Maitland, a guidance counselor. I eventually passed his class with a B, and while I never took another class of his and I think I saw him only one more time on campus, I love him for making that call.
Dr. Maitland—or “Doc,” as I would come to call her—immediately gave me strategies to study better. I never really used other accommodations, but her office would be both my sanctuary and my war room. She became my confidante, my adviser, and my surrogate grandparent. She never made me feel like I was flawed or weak. She encouraged me to exercise, pushed me to find extracurricular activities, and helped me navigate interpersonal relationships. She told me that it was okay to go see professors during office hours because they were there for a reason.
But as with all instances of kismet, I can’t help but wonder what the alternative could have looked like. What if I hadn’t found my music professor in his office that day after I bombed the test, and he hadn’t set me up with a guidance counselor? Or, worse, what if he’d interpreted my confession as a lie, an attempt to skate along in his class? What if he had called the disability services office and they were already closed for the day? Or what if they’d refused to see me because I had not filled out the proper paperwork at the beginning of the year? These what-ifs plague me.
M. Remi Yergeau, the Michigan professor, told me that this is the main reason autistic people fear asking for accommodations—it feels as if we’re seeking out special treatment and that we’re the problem. But asking for help is about addressing structural problems that hold autistic�
��and all disabled—people back.
“It cannot end there, because that would be an admission that, yes, disability is a personal problem, rather than seeing how disability is created by inaccessible environments, how disability is created through discrimination and bias about what represents normal, what represents a normative body or mind,” they said.
Hari Srinivasan said Berkeley’s disabled students program is incredibly accommodating, but the difficulty comes with what to ask for, since it is hard to accommodate fluctuating sensory issues. On some days, he needs a minimal amount of support, but on other days, he can be overwhelmed with absolute sensory overload, which leads to him feeling ready to fall apart. “So, my already limited communication can shut down and I won’t even be able to ask for help,” he explained. Srinivasan said few people understand that each person’s nervous system reacts differently to various stimuli, and this can change by the hour.
Until the world better understands the true needs of disabled people, Srinivasan said, all autistic people can do is ask for the standard accommodations like extra testing time; an aide for communication, regulation, and behavior support; permission to use an iPad or laptop in exams and essay responses; and alternative media for textbooks.
But Srinivasan admits, “This imperfect solution is somewhat stressful.”
Still, the fact there are services and attempts to make schools more accessible is leaps and bounds ahead of what was available for many autistic people in previous generations. One woman I met online who goes by Aria on social media told me college was not the right fit for her. Aria, who was undiagnosed until she was twenty-nine, initially attended Grove City College (a “conservative Christian college,” according to Google) in Pennsylvania, three thousand miles away from her home in Bremerton, Washington. She went there to study music education with the hope of becoming a band director, but over time, she changed her major to English and then to sociology and psychology.