What It's Really Like To Be On The Autism Spectrum

I’m never fully relaxed with friends, I’m always waiting for them to tell me I’m annoying, that I need to change my personality.
Publish date:
May 9, 2014
learning disabilities, autism, Spectrum, nonverbal learning disorder

I always wanted to be different. Growing up I loved reading "Harry Potter," "Mathilda" and "A Little Princess." I wished that I was magical or that I was secretly a princess. I wished that I had something to set me apart from my friends. I didn’t realize that I was already different enough.

I didn’t walk until I was two. My parents were first-time parents and my developmental failures sent them into a panic. They contacted various doctors and I was taken in for tests. I don't remember any of it, but there’s a binder in my house that has all my records in it so I vaguely know what happened.

The doctors (including a psychotherapist who was the first to tell my parents I was on the “spectrum”), gave me an official diagnosis of Fine and Gross Motor Disorder. Fine and Gross Motor Disorder meant that my fine motor skills, like writing or doing buttons and my gross motor skills, like balance and moving core muscle groups were lacking. I was given an Individualized Education Plan by the San Francisco Unified School District (SFUSD), which gave me access to physical and occupational therapy. You can read more about it here.

I worked with these therapists on skills such as walking down stairs and buttoning my own jacket. I know, real Einstein stuff right here. When I lost my IEP because I went to private school, my mom found an occupational therapist for me.

I’ve learned largely to accept myself. I’m always going to be different. My academic skills and my social skills will always be lacking. I can’t change that. I don’t know that I would change it. I’ve lived with it my entire life. My learning disability doesn’t define me, but I wouldn’t be me without it.

Life continued on like that until middle school.

I got a new diagnosis and a new therapist. My diagnosis was for Non-Verbal Learning Disorder, an autism spectrum disorder. Having non-verbal learning disorder is hard. It’s with me every single day, every moment. I can never forget it. It affects my academic life and my social life. Unlike many of my friends with learning disabilities, when I leave the classroom. I don’t get a break.

I have anxiety. I get anxious about flying, anxious about meeting new people, or being in a new social situation. My stomach clenches, my palms sweat, I stop eating. This is a problem especially because I go to college across the country.

I get lost easily. I have no sense of direction. North, south, east, and west are just words to me. Strangely, I’m really got at remembering places I’ve been. If only I could just get to them without being a gross, sweaty mess from anxiety. I give myself a good half-hour extra if I’m going somewhere new.

I’m clumsy. I mean obviously, the part about fine and gross motor skills and physical therapy didn’t tip you off? But I’m clumsy enough to be the lead in a romantic comedy. I’m the kind of clumsy where I don’t notice it anymore. Smack my elbow into a door, have a strange bruise on my shin? Just another day for Maddie.

As part of my learning disability, I was granted extra time on standardized tests in high school. My SAT took me six hours. I obviously needed the time, but prolonging a test wasn’t fun. It also wasn’t fun when friends and classmates routinely told me how lucky I was, how they wished they could have extra time.

Don’t tell me I’m lucky because of something I have no control over, something that actively makes my life harder. I work so hard and still inevitably fail.

I don’t like not understanding sarcasm or jokes. I didn’t like being bullied in middle school because my social skills were that of a kindergartener. I didn’t like failing junior year math and having to beg my teacher to pull my grades up so I had a chance of getting into college.

Luckily, my academic issues don’t have much relevancy in my life anymore, but my social skills definitely do.

I learned early that the way I act socially is unacceptable. So I watch. I watch how people interact, how they talk, how they use their body language, how others respond to said body language. I change my personality based on how people I’m with act. I learned how to laugh at myself and the right way to respond to jokes. I learned how to read body language and understand sarcasm, but it took me a long time. I’m never fully relaxed with friends, I’m always waiting for them to tell me I’m annoying, that I need to change my personality.

I’m in college, so academics still matter to me, but not in the way they used to. I figured out my limitations in high school. I needed a tutor for math and science, a computer to type out my notes and extra time on tests. I chose Sarah Lawrence partly because the school doesn’t give tests, has no math or science requirement and I didn’t have to submit my SAT scores. Bonus: It has a fantastic writing program and is close to New York City