I often thought that if I ever wrote my autobiography it would be titled “Trial and Error.” Living in no man’s land, where you are hanging from the autism spectrum line, but not close enough to the Asperger net, was, and still is rough.
I can remember having meltdowns and sensory processing issues. I was very picky about the texture and feel of my clothing. I was still learning how to regulate my emotions and would have frequent meltdowns and anger outbursts. I also spent a lot of time in the hospital and felt like a lab mouse because no one knew what was wrong with me. I had fevers that would come every two weeks and sometimes the fevers would cause me to have seizures. As a child, my parents fought the battle with various teachers, while I was stuck feeling like a freak on display, both in an academic sense and in a social sense.
Social interactions were an absolute nightmare, and still are to some lesser extent. It felt like I was dropped off in a foreign country, where the customs and language were unknown to me. I was bullied a lot in elementary school, but by the grace of God, I was able to make just one friend, a Korean girl, with whom I learned the ins and outs of school society and hierarchy. Using what my friend told me, I fumbled through junior high, just barely passing math but thriving in art and language arts, as well as in science. The social front took a new twist with the realization of BOYS! Also, I finally had three friends this time, which was astounding to me. Still on the low end of the social hierarchy, I survived junior high and even moved up a couple of notches after I got into an altercation with a bully (not a great way to express myself) and after I wrote a poem about how life is so tough at school.
High school was game changer, now we had cliques. And so I was lost in a foreign country. The teachers were horrible with the exception of three. The words “pain in the ass” were mentioned a lot. IEP meetings became a battleground that included lawyers. Academically I was a good student, but since my teachers could not lash out at my parents, they took out their anger out on me. While the academic battle waged on, my social battles had eased up a bit. I had a crew! Woo hoo, finally… a small group of friends! As the hormones took full control, I turned into a moody teenager. This left me with bouts of depression and anxiety, of which have gotten worse as I’ve grown older.
During my sophomore year, my parents made the decision to find a smaller, private school for me. It was a heart-wrenching decision for me because it meant I was leaving my small group of friends for unknown territory. I spent my last two years of high school at a small private academy called Parker Academy in Concord, New Hampshire. Although I was doing better academically, my social life took a nose dive. Some of these children, or should I say teenagers, where from privileged lives. And for others, this academy was a last resort before juvenile detention. The academy was very small in class size which made me thrive academically, however, the downside to a small school is that everyone is very “clicky.” I felt like I had nothing in common with anyone. I did manage to become close to a few select people, however, by the end of my senior year, I was itching to get out.
Now let’s skip ahead to my first night in college. I had a medical single, which meant no roommate, but my world had turned upside down. I was in a brand new place where I felt like I could not control what happened. Nothing was familiar to me. My parents sent me off to college with nothing to help my anxiety, which led to a lot of panic attacks. I spent the first night calling my mother every two hours, trying to convince her that college wasn’t a good idea after all. That first night I felt so alone and isolated. While everyone else was partying and enjoying their freedom getting drunk and making stupid decisions, I was huddled underneath my quilt shivering sick and wanting to die. In the end, I was thankful that my mother didn’t come and rescue me like she had done many times when I was younger.
As the days turned into weeks turned into months, I began my stereotypical college journey. I got drunk, smoked weed, had my first lesbian experience, as well as my first hangover. My drink of choice for my first drink was vodka and Mountain Dew. Yuck! My social life blossomed. I slowly became open to new experiences. I discovered the world of Gaming and LARPing, which stands for live action role playing. I had my first long-term boyfriend, which unfortunately ended with him sleeping with an underage girl. Once again, I made the decision to leave college. I ended up doing something unconventional and I spent my senior year up in Maine, at the art college in downtown Portland. The trade-off was that I had no friends. By the way, art colleges are very “clicky.”
At this point in my life I was living at home, going to school part-time, and grieving the loss of a boyfriend. After I graduated, I dove into the world of online dating, and again, felt like I was in a foreign country with no clear road or any understanding of the culture and language. I learned one thing- I was still very innocent and way too trusting and very naive. Dating was tricky because I have a hard time reading people’s facial expressions and understanding their tone of voice. It was also a very anxious experience; the idea of going into a situation where I had no idea what was going to happen and whether or not I would be able to control my environment was nerve-racking. I learned many harsh lessons through trial and error and I learned a very, very hard truth. People lie. What people say on their profile is sometimes the complete opposite of who they are in real life, and as a result, I had many dates that ended up with me disgracing myself in a lot of one-night stands. But in my head, in a very twisted way, I felt like that was the only way people would love me at this point in my life. I had a bachelor’s degree in fine arts with nothing to show. I was working a horrible retail job and I had fallen into a deep depression which led me into a dark place with a week-long stay in a mental hospital.
The one thing about being an adult with nonverbal learning disability is that in order to function I had to learn to become my own advocate. My parents could no longer protect me. I saw the world as a scary, unfamiliar place and still do to some extent. Today, what has really helped me is even though I don’t live with my parents, they are still very supportive. I have the help of vocational rehabilitation services since finding a job that fits me has been tough. I recently lost my job and have been unemployed for almost a year. The one saving grace in my life has been my therapist, and my very understanding and patient husband, whom I met oddly enough on an online-dating site.
So my advice to you and how to cope as an adult is: find as many resources as you can. Find a good therapist and get into some sort of vocational rehabilitation placement. Also, and this may sound kind of odd, try to make your disability work for you. I have been able to get support because of my disability and, without my disability, I never would have been able to get the great support I have today.
Idiosyncratic is my favorite word I use to describe myself. My husband says I’m a cat. I have very little interest except for the things that I’m obsessed with, like cats, spiders, English, History, the chemistry of decomposition, sociology, Japanese, horror films, some anime, French romantic films, biology, ecology, and random facts I talk too much about that I love. I have very sensitive hearing and get startled easily. I refused to wear clothing that isn’t a natural fabric because it feels like sandpaper against my skin. I don’t like to be touched on certain parts of my body because it really hurts. I get anxious very easily and still deal with depression to this day and I still wrestle with the concept of what is normal. I can be silly, childlike at times. I still like watching cartoons and I sleep with a bunch of stuffed animals that are cats. Even my blankets have to feel a certain way against my skin. I hate wearing socks. I am married to a great guy. And one of the things that I hear most often from ignorant people is “Do you understand what sex is?” and “Are you capable of having it?” when trying to explain my disability. People think I’m an idiot savant, like Rain Man. I also hear “You’re not nonverbal; you can speak” or “It doesn’t look like you have a disability; you’re able to function so well.” This is why teaching your children self-advocacy is so important to their development and well-being, because people are idiots and I personally refuse to let these stereotypes go uncorrected. I am an odd person, yes, I came to that conclusion years ago, but I’m not a bad person and I am worthy of respect and love just like anyone else. I deserve to be treated as an equal, not less of a person. I am an artist, wife, lover, friend, and mother to a 5-year-old Calico cat named Betsy. This is who I am. It’s not perfect, nor would I want it to be. You learn from your mistakes and you adapt to the world around you. It’s stressful and it’s not always nice, but this is my world as an adult living with nonverbal learning disability.Share your own story