Opinion: Living with a disability is harder than it looks

And it affects millions of people in the U.S.

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Melissa Krupp. Alexander Rodriguez | News Editor

Melissa Krupp, Contributing Writer

Disabilities: they’re everywhere. Especially autism.

 

About 1 in 59 Americans are on the autism spectrum, according to the Centers for Disease Control and Prevention. That’s over 5.5 million people. And with those numbers only growing, you’re likely to have met someone who was autistic and not even realized it.

That person could have been me.

I was diagnosed with Asperger’s syndrome at 7 years old, and life has not always been easy. Things that most people my age can learn with very little instruction, such as hygiene upkeep, time management, and social skills, had to be taught to me step-by-step from scratch.

As a teenager, I was very awkward more awkward than most. I was a short, greasy weirdo who was too loud for her own good, naive as a baby, and almost as gullible as your pet dog.

Boys laughed at me, girls laughed at me, and students younger than me who I barely knew laughed at me.

It was frustrating, and I would come home tired and stressed almost every day. It wasn’t until I was in seventh grade that I began to make real friends for the first time.

At home, even though I was already 14, I was still learning that showering needed to be done daily and that hitting my brothers was not an appropriate way to let them know I was angry.

I was an angry, depressed, and confused child who spent her free time making short-term friends in other countries over the internet, talking to who I thought were teenage boys on different social media websites, and watching TV.

And then college came, along with a completely new set of challenges.

Now that I knew — mostly — how to be an adult, it was off to Palm Beach State College. My mom and I both thought it was safer if I learned how to go to school before learning how to take care of myself alone.

While attending college, I still lived at home and had the moral, emotional, and financial support I needed. This was the only option that presented the least failure — or so we thought.

My very first semester of college was tough. I was learning all too quickly that college was not as easy as I expected.

I had the misplaced idea that community college wouldn’t be that much harder than high school and would be much easier than a four-year university.

I was die-hard set on becoming a biotechnician, but the pressure of a big change, the stress of six difficult classes, and the fear that I wouldn’t be able to get the help I needed had gotten to me. It wasn’t pretty.  

All of this led me to spend two months in the library, doing nothing productive and quickly turning in what I thought was at first only C’s and D’s into what I soon found out were F’s.

I felt like I let everyone down especially myself. When I became an English major the next semester it felt like I had lost a piece of myself because I had always wanted to work in the biotechnology field.

Over the next few semesters, I became engrossed in college life and learned to feel better about the idea of becoming a technical writer. It was something that I had seen on two different career aptitude tests — one that I took after almost flunking out of college.

But I realized that trying and failing is not the end of the world and that going through failures makes you ever more stronger in your next endeavor.

Starting at FAU three years later was quite scary.

There I was in what I call “big girl college,” which consisted of knowing nobody, studying something I had never studied intensely before, and being somewhere I didn’t completely recognize. There was a lot of stress that came with a change of this size and managing all new classes in a new subject, this time for a bachelor’s degree.

One thing that really helped me was a program called Summer Opportunities for Adult Readiness (SOAR). Sponsored by an organization known as Autism After 21 along with an on-campus organization known as the Center for Autism and Related Disorders (CARD), the two work together to prepare autistic adults to be both successful college students and functional adults.

New challenges come with being an adult. Autistic adults might need to learn how to cook dinner, schedule a doctor’s appointment, and do their own laundry, as college might be the first time they are away from home for an extended length of time.

Over a period of 10 days while living in the dorms, the SOAR program helped me adjust to these new changes. When I started FAU that fall, I knew where a few of the buildings on campus were, including the library, the Student Union, the food court, and the gym. I had a general idea of the campus’ shape and wasn’t as nervous as I would be without the program’s help.

And when it comes to having challenges on campus due to a disability, I am not alone.

Hannah Kaye is a 19-year-old sophomore studying biology. She was diagnosed with attention deficit hyperactivity disorder (ADHD) in middle school and has met many others on campus like herself.

She said that others blow her diagnosis off. But for her, having ADHD makes sitting down and staying focused much more difficult than it should be.

She has trouble sitting in class for a full 90 minutes, even finding 50-minute classes to be difficult no matter how interested she may be. Most of her energy goes into keeping track of what’s important and not learning the material itself.

“Nobody likes sitting down and doing two hours of chemistry homework, but with ADHD I get half as much done and spend half of the time distracted and unfocused,” she said.

However, she does not use Student Accessibility Services (SAS), an office dedicated to accommodating students with disabilities on campus.

“I just don’t believe that my disability affects my grades to the point where I need extra time on tests,” she said. “If I do in the future, I will go talk to someone at the office.”

Instead, she finds the quiet study areas on campus to be helpful. She said they provide a quiet environment with few distractions.

Jimmy Roberts, a 27-year-old freshman majoring in social work, has very different challenges than Hannah and me.

His diagnoses include spastic cerebral palsy, post-traumatic stress disorder (PTSD), and manic depression. He said he’s only met a few others on campus who also share some form of the disorder.

He uses a wheelchair, which can make it difficult to maneuver around campus both in and out of classrooms. He finds the door-opening buttons useful, but certain places that should have them, such as the bathrooms, do not.

“Those are times that my spasms get worse, and it makes it much harder to open the door if I am trying to hold my backpack, move my chair, and keep my muscles tight all at the same time,” he said.

There are also places on campus, such as the library, where they are inconvenient. When trying to get into the library, the button is on a railing right against the door, making it hard to reach.

His depression and PTSD sometimes send him into a “funk” that he won’t be able to get out of for days at a time.

It doesn’t help that sometimes it is difficult to get his professors to honor his accommodations, he said. Having to deal with this can add to what is already on his plate, further overwhelming him and lengthening his episodes.

Jimmy cannot drive, so he uses Paratransit, a public door-to-door transportation for disabled Americans, to get to and from campus. Once he arrives, he gets around with his wheelchair, and to help with his studies, he frequents the on-campus tutoring services.

“My electric chair keeps track of miles. I only use it on campus and have a manual one at home,” he said. “[Paratransit] is only allowed to drop me off at the Administration Building, and I have 94 miles from just this semester.”

Transportation can be an issue for those with disabilities. I personally don’t know how to drive, thanks to a combination of epilepsy and the inability to afford insurance, so I rely on a bus system to take me everywhere.

Unfortunately, for the last four and a half months, the people running the system haven’t known the meaning of “on time.” Situations such as these are the times that it really hits home for me that I am, and always will be, different.

With the help of the Student Accessibility Services office on campus, I am able to complete my education successfully. They provided me with a counselor who helped set up my accommodations and transferred all of my necessary information over from Palm Beach State.

I also have use of SAS’s computer lab. This is another benefit of the office.

If I need to do some writing, I have the option of signing in to the assistive technology lab. There, I can write a paper in a quiet environment where I get up to 20 pages of free black and white printing a day.

While becoming an adult might be scary, and life might be difficult, I love myself. I have always had high self-esteem and self-confidence.

Being autistic has given me a unique way of looking at the world, and I live my life outside of the box. By having an intense focus on the things that interest me, I am able to excel, even if that takes some work — work most people might not need to do.

Melissa Krupp is a contributing writer with the University Press. For information regarding this or other stories, email [email protected] or tweet @m31i.