“… the spectrum is truly a color spectrum, It is not one mold that folks fit…”
by Sofia Ciniglio
My name is Sofia. As someone who is neurodivergent, I have often experienced misunderstandings in friendships as well as other relationships.
It has been rather touch-and-go because I have often been misjudged. When people hear about my differences, they will often mistake my empathy as being “naive” or innocent when in fact I do have a true sense of empathy and strongly disagree with the outdated theory that people with ASD do not have empathy.
In turn, it has baffled me why sometimes others just don’t show enough empathy.
At times people have taken advantage of that characteristic and been rather unfair to me, verging on the emotionally abusive. I figured it was time to set some “boots on the ground” boundaries. I have learned not to be as open with emotions, and began to become very private over time.
Throughout the years I have worked to balance these characteristics out. It has been a bumpy road, but the outcome has really turned out smoother. My interactions are much more poised in nature and I can tell my self-reflection has really paid off.
Living with NVLD (Non-Verbal Learning Differences) seemed as though it was rather different to me from the lives of folks who manifest “stereotypical” ASD traits.
For one, math was never my forte, and some who have met me wondered how I could consider myself a person “on the spectrum” if I am not strong with mathematical concepts. I never believed there was one way to be a spectrum candidate, but I looked into therapy and thought that the diagnosis of NVLD might fit somehow. I was also socially aware for someone like myself and that led people to not believe I had a spectrum disorder. So I did become misunderstood, mostly by the neurodivergent community.
About ten years ago, I discovered this bookstore on the Lower East Side of Manhattan called Bluestockings, which specializes in social activism, queer theory, and environmental politics. This was at a pivotal point– I was in college and beginning to search for work outside of the school.
I was, at the time, studying international and cultural studies with an art history minor at St. Francis College. Knowing this was a small department at my college, it was sometimes a challenge to find the classes that worked well for my major, but I was able to somehow, which can be attributed to in part by my tendency to hyperfocus. This is a way in which the ASD characteristics were beneficial.
In order to find belonging with peers, I tended to “read” people quite well during my college years, which, some folks would say, made me “not” on the spectrum.
In college, I formed a wide variety of friendships, dated, was able to pursue a “typical” social life. Only a few of my close friends knew that I had an inkling that I may have been slightly spectrumy, because they were the ones I trusted most and confided in. I did keep it very private that I may have had a spectrum disorder, which was at that time self-diagnosed. Somehow, though, I was able to lead a successful academic and social life in college. I had been on the dean’s list for several consecutive semesters, and participated in honors classes.
Much to my disappointment, I was not accepted into the Honors program upon entering college due to my abysmal math scores on the SAT’s.
Eventually I did go through a period of depression and insecurity about myself and would often compare myself largely to my peers. I did end up seeing a psychiatrist who prescribed Prozac and Abilify for me, which helped a great deal, both with mood and using my “reasonable mind.”
I did still wonder why certain neurodivergent kids in my college would often make fun of me. Oddly enough, the “neurotypical” ones did not, and all my friends were neurotypical. I didn’t understand at the time why, of all people, these specific kids would mock me, harass me, or plot against me. Especially since they were neurodivergent also!
There was one instance when one young woman (I don’t know if I want to call her a young woman by things she said and did, given how immature and callous they were) allegedly reported me to the dean because she made up a story that I verbally threatened her somehow, which I did not. I never do! I thought to myself. She was the abusive one with the most misconduct.
I began to mull it over and collected some thoughts together. In the beginning of college, this particular girl, who had dyslexia as well as ADHD, actually did want to be friends with me. However, coming from a special education high school, I wanted to start fresh in college and “leave special ed behind.”
I figured that shouldn’t mean I couldn’t have neurodivergent friends, so I gave it a try. My conversation with her turned into a nasty development when she asked me if I had a boyfriend, and I said that I did casually date in high school, but never really had a serious relationship at that point. (I was 18). She then said “I have had ten boyfriends”, which I felt was a dead giveaway that she was NOT to be trusted. This equivocation sounded just like those of the kids in my special ed class and I was already tired enough of that. She then went on to ask me some questions that were way too personal and I thought to myself, “Even if I am on the autistic spectrum, I must be very high-functioning because I certainly have better social skills than HER”, meaning the girl.
All I perceived was that the girl acted very naive and immature. It was then that she told me about her differences, and it turned out she had a special education background also. However, I decided she was not the friend for me, after a few attempts to hang out. She was just too bold and too open about things that I thought should be kept either personal or told to someone you really know and trust well. So I dropped her eventually. From then on, she began to spread rumors to other students in the school, some of whom had been my friends before, and THEY were gullible enough to believe it, so I lost friends too.
When I spoke to my therapist at the time, I did say that ironically, I get more verbal abuse from other neurodivergent students in my college than from the neurotypical ones.
My therapist and I came up with a very good point, and that was that maybe it was because people tend to treat others with “differences” the way they have been treated in the past. It was possible that, to them, I was faking neurodivergency and they saw that as an attention-getter, since I was often hungry for approval. Or they may have thought I was too “normal” or at least tried too hard to be so.
So I started volunteering at this bookstore because aside from identifying as neurodivergent, I identified as queer as well. I also was able to find other people my age who felt “different” in a certain way, whether it be queer or neurodivergent, or gender nonbinary identified. I also met some people with similar interests to mine– LGBTQ rights, music history, art history, painting and interior decoration. This also brought out the artistic side of me that I never knew I had, despite having been an art history major. I began to draw and paint more often and would carry on conversations with other young artists like myself.
Volunteering at Bluestockings also gave me the urge to help others in need more and more, since I had been in need myself, and it is only human that we gravitate towards being in positions of an aid or helper.
It is basically empathy that was brought about, which is different about me because some individuals with ASD (so they say) lack empathy, which is something that has always been acute in me even going back to when I was a young child. From then on, I sought out ways to integrate my interests and this sparked an idea that I would help people within the arts fields who were “differently abled” themselves. This is how I eventually came to pursue a career working with blind or visually impaired individuals, and how I am currently working on a project that involves working in accessibility offices in museums, creating tactile guides or images for customers or visitors with low vision.
While at Bluestockings recently (years after volunteering) I came across a support group held for people who identify as both neurodivergent and LGBTQ. Knowing full well I was both, I decided to join and connect with others in a similar position. When they told their personal stories, I could really empathize with the issues they were facing regarding deviation from societal conventions.
I also discovered that the spectrum is truly a color spectrum, It is not one mold that folks fit; there are many shades of gray within it. Many of the other folks in the group were not what I previously thought– all socially awkward, computer “nerd” males. They were actually largely queer – identified female or gender nonconforming participants who faced challenges the way I did, some with ADHD or NVLD even.
This led to a kind of open door for acceptance of whatever differences I have and to embrace and celebrate the unusual traits such as, being able to decipher artwork of a painting in a museum, or to recognize specific periods of music– even identify the composer.
Thus, I thank Bluestockings Bookstore for bringing about this group. Thanks also to the friends I have made at the bookstore years ago for helping me along the way in general.
What I can take away from this experience is understanding a key importance which is becoming prevalent in our culture – the concept of diversity in neurodiversity itself.
Sofia Mochon-Ciniglio is a freelance writer and Braille transcriber for the visually impaired community and is aspiring to work with the American Print House. She is very motivated to lead or guide others who identify as differently abled. Aside from work, she is an avid traveler and has a keen interest in art, food, music, fashion and design.