Autism: A Peek into One Student's Higher Ed Experience
by Samuel Capozzi & Dr. Tiina Itkonen
As a non-speaking, autistic, honor-society, college student, I am living the dream. To be certain, the sentence I just wrote must seem like an oxymoron to the average listener's ears. Yes, I am a non-speaking, non-writing, autistic, young man that attends a California State University and entered as a freshman. As far as I understand, I am one of a few such individuals attending a university across the nation---sort of like a unicorn! However, it seems that the tide is slowly changing and Student Affairs Professionals are beginning to pay attention to individuals such as myself and many others like me. This is my story.
I was diagnosed at four years old, received every, and any therapy thought to benefit someone with autism, and I have the most tenacious parents on the planet. Through the years, I experienced public, private, and home school programs. Although I have some speech, it is unreliable. As such, lots of time was spent trying to develop my speech, but I needed something more to truly communicate. Thankfully, my parents kept searching for answers, and at the age of sixteen, I learned to spell and type to communicate. I went from very basic reading and arithmetic (expressively) to advanced learning very quickly---I was learning all along. My challenges are primarily motor skill impairment including my speech. I learned that I am better-described as non-speaking rather than non-verbal---I often tease that I am quite verbose! Non-speaking is not the same as non-thinking. How is it that we equate the two? Feeling like a second-class citizen without a voice was a type of prison sentence, a denial of my basic human need and right to communicate. I learned that my apraxia is a motor issue not cognitive. This is where my story began to feel like a dream.
Once I established someone with autism could actually attend college, I knew I wanted to get into a four-year university. I felt strongly that if I could keep up with the coursework, I should have the opportunity to access higher education alongside my neurotypical peers. I had a passion for social justice and knew it would be a challenge even with legislation such as the Americans With Disabilities Act (ADA) and Section 504 of the Rehabilitation Act. Nonetheless, I managed to take the SAT (with many accommodations), apply and get accepted to three universities (with scholarships at each), and excel once attending college as a full-time student. It was much harder than it sounds. It still takes a great deal of effort and strategizing to keep things moving forward---a great deal. I still pinch myself.
As a full-time university student it certainly takes many supports and accommodations to sustain my success academically, socially, emotionally, and physically. The fact remains---I have autism. And, the fact remains---I am worth it. Fortunately, the Disability Resource Programs (DRP) and DRP staff on my campus are not only outstanding but forward thinking about how to support students like me. I chose my university based on their strong DRP program. Some of the supports that have been crucial to my success in college include extra time for exams, a note taker, audio text(s), early registration, access to my communication partner, use of my assistive technology (AT), and meeting my professors in advance, all of which have been arranged by the DRP staff. With these supports in place, I have made a relatively smooth transition from high school to college managing to earn straight A’s as a full-time student for the past two years. Nonetheless, I am still up against a lot with autism, and I must work extremely hard and diligently to keep up with my neurotypical peers. If I had to guess, I would say for every one hour my peers work I probably work as many as three---reality of my story.
I have relished attaining higher education and learning from professors like Dr. Itkonen and being a part of the conversation not merely the topic of conversation. It is a lonely experience being treated like a ghost, being spoken about in the third-person, and generally not having a voice in one’s own life. Can you imagine this? Now that I have a voice in my own life, it is my passion to be a voice for the voiceless---to challenge society to rethink autism. As I consider my story from both a personal perspective as well as a model for others to observe, I realize its unique importance. Although I tease about being a unicorn---a mythical creature that legends are made of---I hope my story will not be such a rarity in American society.
Voice of a professor
Samuel requested to take my interdisciplinary class, “Individuals with Disabilities in Society.” I made an exception, not because he has autism, but because the class is an upper division elective and Samuel was in sophomore standing. Since I had space in the class I admitted him. Having Samuel in class was a welcomed challenge for me in thinking about more inclusive pedagogy in higher education. Samuel is our first non-speaking student with autism. I do a lot of pair share and small group work in this 3-hour long class. Thinking through those more carefully before class time was the only change I made (e.g., posting power point slides and video clips before class was one of his accommodations and something I make available automatically for everyone). Sometimes I did email Samuel before class to see if my plans would work for him. Samuel had also asked to introduce himself and explain his experience to the class during the first session. This is something I have everyone do in all my classes.
The generation of children diagnosed with high prevalence of autism has graduated from K-12, and is now college age. Institutes of higher education are not typically prepared to provide a complex set of accommodations. We don’t even think about pedagogy in college instruction—or prepare doctoral candidates for their teaching duties as professors. Carnegie Mellon University recently released a study, which found that professors are afraid of changing the ways in which they have always taught. But as K-12 has moved toward using principles of Universal Design for Learning (UDL), higher education must consider the same to reach this incoming generation of students, many who have increasingly complex and/or comorbid conditions, but are also “technology natives.” Technology used in on-line teaching is our friend for instructing students who have historically not been served by our institutions. Flipped classes, voice threads, discussion boards and other strategies provide access to not just students who communicate through typing like Samuel, but for any student with differing learning styles.
We in higher education need to broaden our thinking from viewing teaching as a “second tier duty” of a professor, and place innovative pedagogy front and center with research. This will allow us to shift our focus from a fragmented understanding of accommodations, disabilities, and differences to inclusive pedagogy (UDL), which is good for all learners, including our English-as-second-language students. We need to, not just because our clientele—the students—is changing, but because it is the right thing to do.
Samuel Capozzi is a Junior at Cal State Channel Islands who has a diagnosis of autism and spells/types to communicate. He hopes to be a pioneer for others who face similar challenges pursuing higher education and a career. He is honored to be on the board of Autism Society Ventura County and has the pleasure of being the first autistic board member.
Dr. Tiina Itkonen
Tiina Itkonen is an associate professor of education and political science at California State University Channel Islands. Her research focuses on education policy and politics.