Increasing the dialogue among stakeholders in New Jersey’s special education system

By Jordyn Zimmerman

“They told me I’d never go to college but I just finished my freshman year — what about all the other students with autism?”

A few years ago, I was on track to receive a modified high school diploma. I was spoken to using basic English with minimal words and taught in separate facilities. I was unable to express most of my thoughts verbally; so many professionals such as teachers and doctors were unable to see how intelligent I was.

Then at 18 years old, I had a communication breakthrough when I began to use an iPad. I was finally able to express my personal thoughts and share what I know, graduating from high school at age 21. After years of being told I would never go to college, I just finished up my freshman year.

But what about all of the other students with autism?

Unfortunately, to many people, autism and a lack of communication skills, doesn’t evoke images of a college student. As more and more students like me enter higher education, we need well-designed systems that are intentional in the way they support us. We need environments designed to meet our sensory needs, faculty trained in how to interact with us and social skill lessons that challenge us, but also prepare us for our future.

Within the next ten years, according to research from Drexel University, it is estimated that approximately 500,000 young Americans diagnosed with autism will enter adulthood. Presently, increasing numbers of students with autism are entering higher education. This wave of students is slowly forcing institutions of higher education to create programs that specifically address students’ diverse needs, but some colleges are not prepared.

When a student with autism is in a public school, the school must comply with the Individuals with Disabilities Act (IDEA), which provides special education and related services to students ages 3-21, as well as the Section 504 and the Americans with Disabilities Act (ADA) to make sure students receive proper supports. In college, however, IDEA is no longer applicable; only Section 504 and ADA applies. This means that colleges must only provide things such as wheelchair ramps and elevators, as well as extra time for tests, interpreters or note takers.

Yet for individuals with autism, these accommodations don’t consider other unique needs such as communicative intents or difficulties processing sensory stimuli. Students like myself need help navigating the dining halls, finding strategies that address our sensory needs and communicating with others — these are what make college accessible.

At Ohio University, I am part of a program for students on the autism spectrum. I chose Ohio University because after visiting multiple schools to which I was accepted, I believe they were best suited to meet the needs of a student like myself. However, my first couple days at college were lonely and agonizing. I sat in my dorm room with my cornucopia of snacks and sobbed. My roommate and suitemates appeared to be adjusting well, although, I was anything but fine. I video-called my mother multiple times per day, in tears.

I was assigned an autism transition coach; an upper class student majoring in communication and science disorders, to serve as my mentor. We walked around campus, took trips to each dining hall, created visual schedules to help organize my time alone and worked through any issues as they arose. Like many other freshman, I slowly began to grasp the pleasure of college.

In many ways, I got lucky. I found a program that could meet my needs and a university that advocates for my success. From my professors to the administration, almost everyone has been welcoming and supportive of my needs — taking the time to meet with me when I have any questions or concerns.

But college life is not perfect.

Sometimes, I am overwhelmed and I meet with my transition coach — and that’s enough. But there are days where I go back to my dorm crying in anguish, hitting my head, unsure of the next step. When I get frustrated, I cry in class. While some of my professors and the people who work closely with me, have learned to notice when I am becoming over stimulated. I struggle with things that many people are unaware of. In the classroom, I have to work extra hard to filter out noises such as the humming of lights or the new construction taking place outside. College campuses aren’t designed to appease to individuals with heightened sensory systems.

Communicating with my peers can also be a challenge. I have been asked whether I’m a student on campus or how I am capable of living in a dorm. Sometimes, I don’t know what people believe a student like myself is worth. While social activities obviously aren’t always easy, I use my communication device to participate vigorously in academic and extracurricular opportunities. Shouldn’t everyone be given the chance to embrace higher education?

In the end, college is about relationships, new experiences and perseverance. It’s about everyone learning to live and work side by side with people from very diverse backgrounds, while also acknowledging the fact that everyone’s contributions are worthwhile.

It’s a place where people adjust and learn. It’s a place of new experiences; of learning and growing away from home – and discovering what you’re capable of. Although, unless all institutions of higher education make major adjustments, college is not going to reach a significant portion of students with autism and that would almost be a crime, because we have a whole lot to contribute — not just to colleges, but to the world.

Jordyn Zimmerman is a rising sophomore at Ohio University. This story was produced by The Hechinger Report, a nonprofit, independent news organization focused on inequality and innovation in education.