“Are you familiar with autism?” At first, the question seemed strange. I studied autism spectrum disorders (ASDs), worked at a summer camp for people with ASDs, and presented research on the dissonance between medical and social models of ASDs. My ongoing independent work investigates neural synchrony as a possible neurobiological mechanism for ASDs. But the psychiatrist was not interested in my academic endeavors. He was asking if I was familiar with autism in myself.
I wasn’t, and as I recognized my own ASD, I realized that the University community is not familiar with autistic students either. Certain University spaces perpetuate harmful misconceptions that serve to make myself and other autistic Princetonians invisible. It was only when I gained an understanding of ASDs and found people who understood disability, that I was able to unmask. To truly support other autistic people, especially those who are a part of our University community, Princeton students and staff should endeavor to reach the same understanding.
My family did not readily recognize my ASD because ASDs are highly heritable. Foremost hypotheses on the etiology of ASDs describe the condition as an endophenotype, a diverse and nonspecific combination of genetic alterations that produce specific characteristics. When these characteristics reach a critical magnitude, they meet the criteria for diagnosis. In other words, people inherit some traits and develop their own, and when one person presents multiple autistic traits, that satisfies a socially defined threshold for diagnosis. Because ASDs are highly heritable, parents sometimes fail to identify autistic behaviors in their children. To the parent who shares the child’s behavior, the behavior is unremarkable.
My mother shared many of the traits that qualified me for an ASD diagnosis. We both felt uncomfortable and avoided large social gatherings. The past academic year, I ate meals in my dorm instead of the dining hall because the noise of dozens of conversations overwhelmed me.
Social discomfort extends to social interactions, too. For me, social cues are difficult. I tried to join Club Swim, the Princeton Running Club, and the various improv troupes, but I was intimidated. I never understood certain social expectations — how often to attend, how much to talk, who to talk to, what to talk about. The fears seem trivial, but without clear expectations in the past, I failed to incorporate myself into swimming and running teams at home. I participated as an athlete but rarely as a person.
Because of my work with children with ASDs, I also naturally adopted masking strategies — smiling when speaking, nodding when listening, sleeping with weighted blankets, carrying fidget spinners, and asking for breaks during long meetings and classes. I also easily adopted some basic social rules that might not be innate or obvious to me, but I understood once someone explained them. The world seemed keen on allowing me to pass.
As a result, I only received my ASD diagnosis in October 2022. The previous semester, I approached a professor about difficulties sitting for exams. During virtual exams, I could stand and stretch in the middle of a long-essay response. Alone, I was never distracted by the shuffling of people, the clicking of pens, and the constant sneezes and sniffling during allergy season. After explaining that I usually stretch every hour and wear noise-canceling headphones during an exam, my professor asked, “Why don’t you have accommodations?”
Her question prompted a referral for neuropsychology testing where I was eventually diagnosed with ASD, Generalized Anxiety Disorder, and Post-Traumatic Stress Disorder. I received accommodations — extended time, exam breaks, and an emotional support animal. However, old problems remained, and new problems emerged.
I soon noticed a disconnect between people’s expectations of ASDs and my life as an autistic person. For example, after confiding in a friend that I received a diagnosis of ASD, she stared at me confused and retorted, “You don’t seem autistic.” When I struggled to navigate the eating clubs, I confided in a friend in a Bicker club that running between unfamiliar and loud spaces and jumping into conversations with new people would overstimulate me. I explained that I felt unable to bicker, and he much too readily agreed, telling me, “Yeah, you’d never make it.” To him, the process of Bicker was not inaccessible to me for a clear, medical reason. Instead, he believed that I was just too “weird” to be wanted.
I also began noticing hurtful misconceptions when people mentioned ASDs in courses. As a student in the neuroscience department, my lecturers often discuss ASDs. Current statistics indicate that 1 in 36 young people receive an ASD diagnosis. However, contrary to discussions about anxiety and depression, professors often do not recognize the space ASDs fill in our campus. More often, I see photos of white boys playing with puzzles — both on online resources and in lecture slides. Professors continually show my peers that ASDs are children who cannot maintain eye contact and sometimes cannot speak. Where are the autistic adults? Where are the Black autistic people? Where are the queer autistic people? Where are the autistic Princetonians? Where am I?
More than making autistic Princetonians invisible, professors presented inaccurate, outdated, and sometimes insulting information about ASDs. To reiterate, foremost hypotheses describe ASDs as an endophenotype — a set of nonspecific heritable traits. Nonetheless, a neuroscience professor proclaimed to an entire lecture hall that ASDs result from damage to the cerebellum despite traumatic brain injuries and interpersonal trauma representing distinct diagnoses separate from ASDs. He called my brain damaged. Another professor maintained on an exam that ASDs result from “a lack of proper input for social development” even though that idea was historically used to blame mothers for their children’s innate disabilities. During a seminar on ASDs, a psychology professor only assigned readings about nonspeaking or minimally speaking autistic people, and after I asked for articles written by autistic people, he told me that he had never read one.
Despite difficulties adjusting socially and within my department, I found a space that understood me. At the end of Fall 2021, when I still checked the listservs, I read an email about a position working with the AccessAbility Center. The center is a gathering space designed for universal access and for fostering conversation about disability. Our mission is to see disability as a part of diversity. Luckily, I became a fellow.
The center offered numerous social and sensory supports: therapy dogs during midterms and finals season, standing desks, sensory lights, white noise machines, and fidgets. The conscious and proactive steps towards accessibility in the AccessAbility Center ensure that everyone, myself included, possesses the resources to be safe, comfortable, and productive.
I also found my people at the AccessAbility Center. Spring 2022, during a formal biannual meeting, I needed to move and fidget. Instead of excusing myself, I asked for a 10-minute break. During the break, I started doing jumping jacks. My coworker Topaz Winters ’23 smiled, laughed, and said, “I love you.” The center attracted people who understood disability and encouraged me to unmask. Because of them, I found a version of myself with fewer masks.
I am autistic. For me, supports such as clear email communication and mid-meeting jumping jacks are necessary. In the AccessAbility Center, I don’t have to abandon that need, because it is provided without question and with a smile. I am autistic, but I never identified with that label until I found people who understood disability. To support autistic Princetonians, the wider Princeton community should develop the same understanding and acceptance as the AccessAbility Center so that I and other autistic people can feel seen on Princeton campus, and so we can hear the word “love” instead of “weird.”
Harper Chambers is a junior in the Department of Neuroscience and an AccessAbility Center Fellow. He can be contacted at harperrc@princeton.edu.
Editor’s Note: The ‘Prince’ did not independently verify the author’s statements regarding the readings assigned by the psychology professor.
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