Originally published in the “Autism Research Institute Adults with ASD eBulletin.”
My son, DJ, leaves for Ohio in a few weeks. He was admitted to Oberlin College, a highly selective institution, last spring and decided to take a gap year to work on a film he has been making with Rob Rooy about his inclusion experience and to practice greater independence. He aspires to be the first nonspeaking person with autism to go away to a residential college and live in the dorms. There may be as few as ten nonspeaking autists,[1] but certainly no more than twenty, in the United States who have earned a college degree, and all of them, so far as we know, have lived off-campus while going to school.
Although DJ could have attended Grinnell College, where I teach, and lived comfortably at home in Iowa, he chose Oberlin. Aside from simply liking it better than other institutions, he was impressed by Oberlin’s record of inclusion: the school accepted the first female and African-American students in the United States. Why not the first nonspeaking person with autism to live in the dorms? Inspired by those who have broken barriers before him, DJ is driven to do the same for those who come after. Included in a regular school from the day that my wife and I adopted him at the age of six, he insists on his right to a productive and meaningful life, and he asks that we all labor imaginatively to help make this possible.
Although he won’t matriculate until next fall, DJ is moving to Oberlin in order to prepare for this event. He needs to acclimate himself to very different surroundings; he needs to hire a team that will support him in and out of the classroom; he needs to familiarize college personnel with his particular neurological difference and the accommodations it requires; and, as he typed on his iPad, he “needs to find dear, reasonable people who will help allay [his] fear.” The labor and expense will be prodigious—think NASA preparing for the first man on the moon—but my son deserves a shot at his dream, having worked harder at his studies than any young person I know. Thankfully, Oberlin has said that it is committed to learning how to facilitate his success. By moving to Ohio seven months early, DJ hopes to be ready for that first night in the dorm and that first day in class.
Fortunately for DJ, Oberlin offers a greater variety of on-campus housing and dining options than most liberal arts colleges. First- and second-year students can live in a dorm that is, or is not, substance-free (the term that colleges use to designate spaces where neither drugs nor alcohol can be consumed) or in a student-run co-operative house. Singles, doubles, triples and some quads are available. A few rooms even come with their own bathroom. Students can eat in either one of the two cafeterias, or they can be a dining member of a student-run co-op. Third- and fourth-year students have even more options. When I asked DJ what his preferences were, he typed the following:
I want to live where I feel safe and free to be myself without the stress of having to act normal. Home is safe because my mom and dad make me feel hopeful that changing people’s attitudes toward nonspeaking autists is possible. As I go to college, I am hoping to create a really supportive community of fresh-thinking people who view me as caring and created as equal. I dread confronting people who misunderstand me or who underestimate autists. Dread creates fear. Resting in my quiet room helps me desert fear. I feel like a single room is necessary, so I have a loving space where I can reassess myself as the smart, respectable person I am. Right now I am leaning toward living in the substance-free dorm. I know from experience that drugs and drinking create dangerous situations in which even friends can become untrustworthy. Cafeterias are fearful because they serve food that really feels dreadful in my breathing easy body. At Oberlin, students can eat in student run co-ops where the food is healthier. I hope to join a co-op that offers fresh fruit and meat. Treating me as free to make my own decisions feels fearful but hopeful. In my mind, Oberlin College’s golden buildings represent hope, and hope breaks barriers.
As his father, I want DJ to understand that even if it doesn’t work out, he is a success. It may be that this sort of pioneering demands too much of a nonspeaking person with autism. Perhaps he will decide to live off-campus or even leave for a college closer to home. Perhaps Oberlin just won’t be ready for this kind of experience yet; despite wanting in the abstract to be inclusive, much more preparatory work on its end might need to be done. Who knows? Nothing about our journey as a family has been certain. At each step, there have been seemingly insurmountable obstacles: getting DJ out of foster care, including him in a regular school, teaching him how to read and to type, helping him to transition to middle school and then to high school, getting him ready to take the ACTs and to apply to colleges. Many wonderful people have helped us on our journey, and though we’re starting from scratch in a new town and at a new institution, we believe in the future.
Author:
Ralph James Savarese is the author of Reasonable People: A Memoir of Autism and Adoption and the co-editor of two collections: a special issue of Disability Studies Quarterly entitled “Autism and the Concept of Neurodiversity” and Papa PhD: Men in the Academy Write about Fatherhood.
DJ Savarese graduated with highest honors from Grinnell High School. Winner of an “Uncommon Student” award from the Herbert Hoover Presidential Library for his work as a literacy and inclusion advocate, he has appeared on “Anderson Cooper 360” and presented at conferences throughout the country.
[1] Many who subscribe to the idea of neurodiversity follow Jim Sinclair and use either “autists” or “autistics” to denote those with autism. Rejecting “people first” language, which implies that autism is both secondary and regrettable, autists understand their condition as an essential part of who they are, bringing with it both challenges and gifts.