News and Knowledge

How autism shaped the academic journey of two completely different people

Dena Gassner, MSW is a second year Ph.D. student in Social Welfare at Adelphi University. The Arc US and GRASP benefit from her insights on their national boards. Her presentations have included the Government Accountability Offices, the UN in Geneva, National Autistic Society of Scotland and more. PK is a fourth year junior at Marshall University who lives for movies and football. He, like his mother Dena, loves to travel and experience new places.

My son, PK, was diagnosed at age 3 with classic autism and intellectual disability. Many people presumed he was unable to learn—“uneducable,” so he was largely underserved for more than twelve years. Throughout this time, I insisted that he remain fully integrated in the classroom. In spite of the neglect he experienced, he continue to learn. It was not until tenth grade that he received the support he needed from his first educational team. They saw his potential. He was worth their time, resources and technology. Fast-forward to today and he is now a twenty-eight-year-old junior in college succeeding with a wide array of academic supports. Ever since he could remember, PK always had the benefit of knowing he was autistic. His autism is more “external” or obvious than for others on the spectrum, so it was important that I helped him understand his autism and learn to accept himself early on. He was never discouraged from using accommodations and learned to embrace them.

My name is Dena Gassner and I am a non-traditional PhD student at Adelphi University in Long Island New York. I was diagnosed with autism just as I was completing my Master’s Degree at the age of 38. When I was in middle school, I performed well academically but felt that I remained substantially misunderstood. Little did I know at the time that I felt that way because of my autism.

Given our different backgrounds and experiences growing up, disclosing our autism and receiving accommodations in the college setting look differently for us. Here’s how:

PK’s College Experience

Enrolled in the College Autism Program at Marshall University, PK went through a three-stage process to disclose his disorder and receive the supports he needed. He first coordinated with the Disability Services, which provided a letter to his professors stating that was registered for services including note-taking, separate test-taking, read alouds, and digitized textbooks.

The second stage involved a two-page written letter by the Autism Program, introducing PK to his professors. The letter is more nuanced and explains meaningful information about who PK is and how he learns within the context of class or lecture. For example, he doesn’t take his own notes, which allows him to focus on the instruction. The professors are left with a more comprehensive picture of him.

Finally, the third stage is ongoing. PK has challenges with expressive language, so he has the support of a graduate assistant assigned from the Autism Program who helps him problem solve and articulate his needs when conflicts arise. Although I was there to do this in the past, this allows him to become far more independent.

PK lives off campus in his own apartment. In less than two years, his independence has evolved in such a way that I only really need to see his list of classes and grades every term, just to make sure things are on track.

My College Experience

My experience was vastly different from PK’s. Unlike PK, my autism symptoms are more subtle and hidden, though they still present their challenges. As I mentioned earlier, I wasn’t diagnosed with autism until I was in graduate school. I earned both my Bachelor’s and Master’s degrees without using formal academic accommodations or supports. Seventeen years later, I am now holding a 3.7 GPA in a PhD program with minimal accommodations—the first accommodations of my life.

As an undergraduate student, I always felt like I was falling behind on my work at the end of each term. Though I didn’t receive formal accommodations, my professors would occasionally give me extensions when I requested them. I experienced issues with working memory and processing (e.g. prioritizing, categorizing and understanding timelines), but my natural “Adderall” (or, adrenaline) and high verbal skills allowed me to overcompensate for this. This all came at a severe emotional and physical cost, but I was young. I could not articulate any of this to others or more importantly, to myself. My psyche was fragmented, and at the end of each term, I left feeling like a fraud, undeserving of my success. I was disconnected from my authentic self and my identity as an autistic.

When I was in graduate school earning my Master’s degree, my first attempt at obtaining accommodations was met with a very hostile supervisor who shamed me and called me a cripple. This was back when I was misdiagnosed and overmedicated. It was an unbelievably traumatic experience that left me bewildered and ashamed of who I was.

Later, I received my correct autism diagnosis. With the support of my friend, Stephen Shore, I integrated and embraced my autistic identity to feel more complete and connected. The bewilderment and confusion lifted and with that, the shame was gone. I know about autism, how I experience autism and how others perceive my autism. From that foundation of awareness, I have learned to express what I have, what I need and why. Since my autism is more subtle and can be easily misrepresented as something else, I fully disclosed my autism to classmates and professors to foster better understanding.

Of course, there were some accommodations that I requested or made to address certain challenges. For example, I used formal test-taking extensions, received extra tutoring to compensate for my math learning disability, and had the fluorescent lightbulbs directly above me removed due to my sensory issues. I managed to graduate with honors while raising two young children.

The key to individualized success is having strong self-awareness and living an authentic life that is in tune with, not in spite of, one’s autism. Success is not about outgrowing accommodations—it’s about building the awareness and confidence to deal with them.

Based on my personal experience and nearly twenty years of advocacy work, I’ve seen firsthand the negative psychological effects people have when trying to hide their disability. Though well-intentioned, the goals are often misplaced. Constantly asserting an inauthentic self is exhausting.

Autistics have more complications due to these barriers. Difficulties with executive function, overmedication, and communication are all problematic. The key? Being able to articulate what you needs, either directly or with supports.

PK and I are two very different people with two different profiles in spite of having the same autism label. My son’s autism is more evident and he endured other people’s low expectations growing up. My autism is more hidden, so I endure the constant burden of proof test. We are both autistic and aspire to be our own unique and personal bests. Happily, we are experiencing tremendous success not by overcoming our accommodations or hiding in shame, but by intentionally maximizing the individualized supports we need and being true to ourselves.