What it was like to be diagnosed with a learning disability no one’s ever heard of

By Beth Jacobson on May 24, 2016

“Do you mean like dyslexia?”

This is the question I get from many people when I say I have a learning disability. It’s also a question my parents and I have struggled to answer ever since I was a young child.

When I was 2, I was diagnosed with developmental delays. I was far behind other kids in language development. When people said my name, I wouldn’t respond. I was barely talking.

As I got older, my language delays turned into a diagnosis of learning disorder not otherwise specified (LD-NOS). LD-NOS was this broad, loosely defined term. After each evaluation, my parents were told things like: Beth may have trouble organizing or synthesizing information. May have trouble with mechanical concepts. May have trouble understanding spatial concepts. None of this gave my parents or me a simple way to explain my struggles to others.

“So you have dyslexia?”

This time, the person asking about my diagnosis is my college professor. It’s the first week of the semester, and we’re meeting in her office. Already, my brain’s organization issues are kicking in and I’m struggling to express thoughts out loud.

Nervously, I’m wondering, how do I even begin? I worry the professor will think less of me, and say I’m just making excuses. I’m afraid she’ll simply take “not otherwise specified” to mean that I’m just generally “slow.”

What I want to tell her is that I have overlapping challenges. These issues are connected, but it’s not clear exactly how. They affect almost all areas of my life.

Organizational challenges. Motor-spatial difficulties. Trouble with motor skills. Slow processing speed. Challenges with processing auditory information. These issues come up in ways I’m constantly adapting to. For example, class discussions go over my head as I try to process information. My papers are filled with typos and disconnected ideas.

It’s not because I’m rushing or not trying. It’s because typing is difficult for me, and I have trouble getting my thoughts in order.

Over the years, I’ve learned not to be ashamed of my difficulties, but it hasn’t been easy. In middle school, I was failing most of my subjects. My highest grade, in English, was barely a C+.

My exasperated parents asked, “How is that possible? You’re such a good reader!” It’s true that reading and writing come to me more easily than math or foreign languages. But I still struggle with getting my ideas down on paper.

Because of my struggles, it was hard to feel any motivation or interest in academic work. My grades seemed to be telling me that I wasn’t a “good” student.

It wasn’t until high school that things started to change. I transferred to a specialized school for kids who learn and think differently, where I began to confront my academic challenges and fears. At my new school, I got support and individualized attention. I started to be motivated by my studies. I came to recognize that my ideas have value.

In college, I was fortunate to have professors who looked beyond the mechanical struggles I faced with my writing. They saw my intellectual curiosity and reasoning ability. By setting high standards, they encouraged me to sharpen my writing skills.

The initial fear I felt in the professor’s office slowly faded. Over time, I learned how to describe my learning differences and to advocate for myself whenever I got the “dyslexia question.” I stopped letting my fears get in the way of my passion for learning. Discovering how to advocate for myself also helped me discover a new passion for advocating on behalf of others.

Recently, I’ve seen a shift in the way we discuss learning differences like mine. People are starting to talk more about things like executive functioning and slow processing speed.

One big change is that the term LD-NOS is no longer used. In 2013, the diagnosis was taken out of the DSM, the manual clinicians use to make formal diagnoses. Today, LD-NOS falls under the category of “specific learning disorder” (SLD). It’s right there alongside other learning differences like and dyslexia.

Changing the name from LD-NOS to SLD doesn’t eliminate the frustrations I face. But I felt like it was an acknowledgment of my diagnosis. It was saying that learning differences don’t always fit neatly in a box. With a common diagnosis of SLD, a part of me felt closer to the learning disability community.

For me, all the different kinds of learning differences are connected. Coming to that realization has given me a new way to understand myself. It’s also given me a new sense of self-confidence.

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    About the author

    About the author

    Beth Jacobson is a writer and disability activist with learning and thinking differences. She is based in New York City.