Pathologically Genuine XIII: Autism, Dorm Life, Finding Community, and the Only Hat that Ever Gave Me Meaning.
I have no idea how I managed to survive in a college dorm for 1.5 years. A hat reminded of me of one aspect of how I did it.
This story is about how lucky I was, as an autistic person, to find community in a college dorm fifty years ago. The hat I am wearing in the picture below was bought for me this holiday season by a friend from my college dorm to replace the only hat that ever meant something to me. It symbolizes for me both being part of a dorm community and the need for protective shields from my kryptonite.
Many research studies show that developing friendships is a primary goal of autistic and non-autistic students as they enter college1,2,3,4. But it can be challenging for autistic students to develop friendships, particularly with non-non autistic students 4 and references within. I know it was for me.
I interact with many neurodiverse college students in my classes. I also get to know a number of autistic high school students given my role on the board and pet therapy volunteer at a school for 4-12 grade autistic people (The Lionheart Academy of the Triad). One of the most challenging issues for current autistic college students I know, and fears that high school students express to me about transitioning to college, is living in a dorm, making friends, and becoming part of the community see 4. That fear is something I can relate to. Social skills can be essential in navigating all of the craziness of dorm life, let alone the normal issues of being eighteen years old. I didn’t have great social skills, so I felt like an outsider a lot, especially at first.
When autistic high school students tell me about their fears of the social transition to college, I often will just tell them about my experience. And, from that experience, I talk about how important it was for me to live in a place with a sense of community. Some of the autistic students are well prepared for college academics. For those students I suggest they look into whether the schools they are considering have honors colleges (or residential colleges like schools like Yale and Rice have) where there is strong culture of community that integrates academics and social life. It would have been much easier for me in my first semester if I had been living in that sort of community. I also struggled with large parties, dances and “get to know you” receptions. So, I suggest thinking about that aspect of college in choosing one.
I also ask whether the schools they are looking at have support for autistic students. My university does not have much. But more and more universities do. The College Autism Network plays a huge role in promoting best practices for autistic college students. So, I want to give them a plug.
In many ways, I don’t know how I made it through college social life as an autistic person (though I didn’t know I was autistic then). I particularly don’t know how I managed dorm life in a small room (about the size of small hotel room) with two other people I did not know my first semester- I could never do that now. I need so much personal space and I have a need to control my sensory environment including light, temperature, sound and smells. That made it hard for me and my roommates. Sharing residential space with someone who needs that sort of tight control over their sensory environment is not easy. I often think of my wife as a Saint.
My first semester was particularly difficult. It was difficult adjusting to college. It was difficult adjusting to sharing a room with two other people I did not know. I had great difficulty with the social events and expectations of college (I hated going to loud parties, I did not know how to approach women. I was terrified at large “get to know you” receptions). I also ate way too much. Plus, the dorm section I lived in (4-west) had no sense of community at all. My two roommates were fine, but we did not become friends.
During the next two semesters, before I moved off campus with housemates and had my own bedroom, I roomed with Steve (the person not wearing a hat below). We met because I would play my guitar in the stairwell of our dorm (Penobscot Hall) at U. Maine and Steve came up the stairwell to jam with me. Meeting Steve was the best social thing that happened to me during college. Steve lived in 4-east, just down the hall from me. But the difference between 4-west and 4-east was like the difference between living in the US (4-east) or living in the old Soviet Union (4-west). The swinging doors between the sections were like the Berlin wall, sans guards.
Four-east had a fantastic sense of community (some of the community bonding was around a game called the “eye of the bong,” getting the munchies, and ordering from Orono’s flagship dining and drinking establishment, Pat’s Pizza). Social life was still hard for me, but I did feel like I belonged on 4-east. My grades improved a lot in my second semester, and I ended up graduating with highest honors.
In many ways, Steve, and my community in 4-east , played a huge role in that adjustment.
Steve is great guitarist and has a wonderful voice (think Kenny Loggins). My voice was terrible then, but I played a mean lead. We formed a two-man band, the Stairwell String Duo, and did talent shows (we won) and gigs throughout our time in Orono. Our 4-east dormmates were our biggest fans- including taking over the college radio station with us for a live version of “up against the wall redneck mothers” by Jerry Jeff Walker. The Stairwell String duo played two other songs first. We played a song that I wrote where the mix of chords, Steve’s voice and my lead were perfect. Unfortunately, I don’t remember how to play that song anymore. We also played a truly beautiful song that we still play, that we hope to record some day, written by a friend, titled, The Magic of Maine. We nailed those two songs, and our performance of those songs was something to be proud of. I think we still have a tape of it. We also nailed the Jerry Jeff Walker song with our dormmates as backup singers. But that song was not something to be proud of. It was, however, a hell of a good time for everybody but the student DJ who invited us to do the live performance. I doubt he will ever forgive us.
I don’t have much of a memory of how being autistic affected me in college. But I am sure that Steve must have been extraordinarily patient in order to share a room with me, let alone be a good friend. Steve and I lost touch for 25 years after graduation but found each other on Facebook a few months before I moved to Richmond in 2011 to take on a Dean role at VCU. It turned out that Steve was living in Richmond. The band got back together. All became right with the world.
I ask you to notice the hat I am wearing in the picture of the performance of the Stairwell String Duo. I generally hate wearing hats- but there was something special about that one. I was looking at the picture the other day remembering how great it was to be a part of the Stairwell String Duo. I also remembered how that hat made me feel invincible. And, in doing so, I remembered how much that hat symbolized the best of my college experience, which otherwise went up and down like the tides.
Steve posted on Facebook the picture of us playing for my birthday on Dec. 30th this year. Another friend and dormmate who was part of our fan club, Bob, also chimed in. I joked that I needed to find that hat. Within a few minutes, Bob ordered me a hat similar to the one I wore in our performance and is shown in the picture at the beginning of this piece.
Most importantly, the pictures, my friendships with Bob and Steve (and our dormmates), and the arrival of a replacement hat reminded me of how important community is for neurotypical and neurodivergent students as young Freshman in college. It also reminded me why it has been so important to me as an autistic person to have an invincibility shield from the kryptonite of autism, like the hat was for me then, and what my dogs do for me now. Thanks to Bob, I have a backup shield in the new hat.
References.
McCabe, J. M. (2019). Connecting in college: How friendship networks matter for academic and social success. University of Chicago Press.
Scanlon, M., Leahy, P., Jenkinson, H., & Powell, F. (2020). ‘My biggest fear was whether or not I would make friends’: Working-class students’ reflections on their transition to university in Ireland. Journal of Further and Higher Education, 44(6), 753–765. https://doi.org/10.1080/0309877X.2019.1597030
Frost KM, Bailey KM, Ingersoll BR. “I Just Want Them to See Me As…Me”: Identity, Community, and Disclosure Practices Among College Students on the Autism Spectrum. Autism in Adulthood. 2019;1(4):268-275. doi:10.1089/aut.2018.0057
Nachman, B.R., Isaacson, K.B., Cox, B.E., & McDermott, C. T. 2025. The Journal of Higher Education. 1-26. https://doi.org/10.1080/00221546.2025.2497184
This is absolutely beautiful Jim, what great memories and a wonderful nod to the communities in your life that help make them. It's also fun to see the photos of you back in the day!
Thanks for sharing your experience. I wonder how this would have been different if you'd had your diagnosis. Also: love the shout out to your wife. :)