Sunday, August 25, 2019

I am 18 years old, and I grew up in upstate New York.
I am still a student as of now, but I just finished a summer job at the New York State Talking Book and Braille Library. I liked it a lot because I had quite a few projects I could work on at any given time, most of which were quiet and solitary. Plus, my coworkers were very supportive, and I got to work with computers, which I absolutely love. Last year, I had an internship with my school district's assistive technology department. That was a great experience; it reinforced my desire to help other people with disabilities and gave me the chance to try out a lot of revolutionary technology.
Something people would be surprised to know about me is that I can pretty much recite all of "Star Wars Episode IV: A New Hope" from memory.

My biggest accomplishment I think that getting accepted to Wellesley College has been my biggest accomplishment because it was a culmination of many of my previous achievements
How I want to change the world: One day, I want to build augmentative and alternative communication devices that can help others who find it difficult to speak. (There are some in existence now, but not many are accessible to people with vision impairments.) I'd also like to help develop the artificial intelligence algorithms behind Aira, which is a service that provides descriptions of visuals for people who are blind. Finally, I would love to make the world a more accepting, informed, and inclusive place for neurodivergent individuals.
Something I wish Neurotypicals knew about autism is how infinitely diverse the autism spectrum is. It's called a spectrum, and not a continuum, because there is literally an infinite number of ways that autism can present. Every single autistic person has a unique personality and a unique combination of autistic traits. When you interact with us, it would mean the world if you remember that we are individuals, each with our own abilities, challenges, interests, and goals. Too often, autistic people are placed into categories: low or high functioning, intellectually disabled or genius, in need of support or relatively independent... the list goes on. But our potential cannot be summed up in a list of labels, and we usually don't fit neatly into categories. In truth, we want what everyone else wants: to be accepted and valued for who we are as individuals.

To any autistic people reading this, whether you are diagnosed or not: I want you to know that you don't have to hide your uniqueness. I tried that for 16 years, and all it accomplished was making me feel broken, out-of-place, and not good enough. If you find it hard to speak, try an alternative communication method like sign language or typing. If you're overloaded by sensory input, stim. (Granted, you will have to hold back at times, like in job interviews for example, but those times should be rare.) Your true friends will stand by you and support you in being your true self. It will be tough at first. I am still struggling to be myself. But for me, it has been 100% worth the difficulty, because I am learning to work with my brain instead of molding it into something it's not.

Resources that benefited me: In addition to being autistic, I am almost completely blind due to a genetic retinal condition. Because of this, I had a series of paraprofessionals throughout my school years even though my autism went undiagnosed until the age of 16. All I can say about that is that finding the right paraprofessional is INCREDIBLY important. Since a student and para will be working closely together, often over multiple years, it is vital to make sure that it is a good match. I personally experienced both a supportive paraprofessional who worked with me to accomplish my goals (both inside and outside of my IEP), and one who put me down and convinced me that my struggles were all in my head/my fault. That being said, the former type can make a world of difference in the life of an autistic person. It certainly did for me. I also received occupational therapy at a young age due to some motor difficulties. I found it very engaging and helpful; it gave me a safe place to experience new sensory stimuli and practice skills like using scissors, tying shoes, and even brushing my teeth (I always had trouble with toothpaste tubes). I have a counselor who I see almost every week. She helps me manage my anxiety and learn how to handle social situations.
Finally, the most valuable resource I have ever encountered is other autistic people. It might seem unnecessary or even counterproductive, but helping an autistic person get in touch with people who have similar challenges and strengths is one of the best things you can do for him/her. When I joined online support groups and started communicating with fellow autistic people, it opened up a whole new way of thinking for me. It showed me that I wasn't alone or crazy or an alien pretending to be human, and that I can do almost anything if I work WITH my unique brain instead of against it.
Silly awkward fact about me: I have never been good at small talk. When someone asks "How is your day going?", I usually can't tell whether it is a genuine query or a social nicety. If the conversation turns to the weather, I am likely to end it by pulling out my phone and rattling off the forecast. Also, I am definitely not a morning person. So it isn't hard to imagine how I felt every morning when I walked into the library to start work. Although I knew that people were simply trying to be friendly, every casual "What's up?" or "How was your night?" felt like a quiz I hadn't prepared for.
One morning, after a particularly exhausting walk into the building (my sense of direction isn't exactly wonderful either), a coworker came up to me and asked the dreaded question: "How are you doing?" I froze for a moment, mouth hanging open as I struggled for words. Finally, I did what any socially savvy teenager would do: blurted out a fun fact. "There are 525,600 minutes in a year!" I announced before running off to my workstation. Though it was not a typical response, I think everyone enjoyed it. In my opinion, it's good to give people a break from the rhythm of "normal" social interaction anyway.
Signs/symptoms that indicated I was autistic: I always had sensory processing issues, but in middle school, I became very light-sensitive, to the point where I had to wear sunglasses almost all the time. When that eventually faded, it was replaced with strong sound sensitivity. Plus, I absolutely LOVED bouncing, rocking, and playing with handheld fidget toys like tangles and spinners, which I first mistook for hyperactivity instead of sensory stimming. I had no idea that sensory preferences could change overtime, so I sought medical help for these differences as they arose.
I have always had trouble making friends, but in elementary school, I received a lot of support with social interaction. That went away in middle school, and no matter what I tried in order to make friends, nothing seemed to work. I could no longer use the strategies I had learned in elementary school; there were no longer clear rules to follow and people said things they didn't really mean or meant/implied things they never said. While my peers were able to navigate this minefield with only a few explosions, I was completely left behind. Things only worsened in high school, to the point where I refused to get out of bed some mornings because I simply could not take any more confusion or isolation. I had many strong interests as a kid, usually obsessions with particular books. For instance, after reading the Ramona series, I wanted everyone to call me Ramona, wanted my hair cut like Ramona, visited Ramona's website frequently to read all about her, and constantly brought her up (to the point where my teacher had to set a limit on the number of times I could talk about Ramona). Now, I am very interested in disability rights, robotics, and science fiction.
I loved to repeat things others said, particularly my mother. Most people got upset and thought I was mocking them, and only later did I learn that it was harmless echolalia. Finally, I have problems with executive functioning, which means that I have trouble planning out a task and staying focused on it. On low-energy/high-distraction days, it can take me hours to write a five-sentence paragraph, even though I am a strong writer according to standardized tests. Many of these traits were attributed to my blindness when I was younger, simply because the people around me had never interacted with a blind person and thought that my struggles were typical for kids with visual impairments. I, however, suspected that something else was going on. When I met a fellow autistic person at a science camp in 2017, everything began to make sense.
When I was finally diagnosed with ASD, I felt so relieved that I started crying, and the nurse practitioner who told me gave me a hug because she thought I was sad. All my life, I had believed I was broken or an alien, and my diagnosis was a definitive explanation for many of my differences. I no longer had to feel ashamed or like a freak; I could be myself and be proud. Best of all, my diagnosis showed me that I am not alone, and for the first time in years, I finally made friends who understood . I guess it was a little like Hermione Granger from Harry Potter must have felt after learning that she was a witch; she had grown up in a world that did not understand her, and she was finally told why and shown that her struggles could be managed and her differences were wonderful.
How I feel about my diagnosis now: When I was first diagnosed, I pretty much thought about it all the time, and told anyone who would listen. It was a huge revelation to me, and I wanted to share. But I soon found that most people didn't understand why it was good news. Some denied that I was on the spectrum at all, which hurt because it felt like they were trying to take away the answers I had found (even though they were not intentionally doing so). I was very defensive in those early months.
Now, I am learning how and when to disclose my diagnosis. I'm learning to give just enough information for people to understand and help me, but not so much that they become uncomfortable. In short, I have settled down somewhat, and my diagnosis is more integrated into my life than it was before, when it was novel.

Struggles with a LATE Diagnosis: My life was very difficult before receiving my diagnosis, mainly because I didn't understand myself. For example, I have always had trouble getting words out verbally in overloading, fast-paced, and/or otherwise stressful situations. When I couldn't get words out, I would do my best to force them, and I usually wouldn't say what I needed or wanted to say. My parents and teachers, who simply did not understand my struggle with speech, thought I was just tired or cranky or being rude. But after my diagnosis, I discovered UrVoice and Proloquo4Text, two iOS apps that allow me to type what I want to say and have it spoken out loud by my iPad or phone. Finally, I could communicate what I intended instead of an abbreviation or approximation. It took the people in my life awhile to understand why I suddenly began typing in stressful situations, but now most of them are just relieved that they can understand me better in those instances, and that I am not trying to be rude or ignore them. My sensory processing differences were harder before my diagnosis as well. I was always told that my light sensitivity was due to my retinal condition and my sound sensitivity due to anxiety. In addition, I was discouraged from rocking, spinning, bouncing, and other stims because, in the blindness community, stims do not have positive effects on people and so are suppressed to make it easier to fit in. After learning that I am on the spectrum, I had to teach myself to stim again. I learned which stims help me when I am overloading due to light or sound (in my case, rocking, listening to music, and squeezing a tiny spiky ball I carry in my pocket).
My ASD diagnosis provided opportunities for me to learn more social skills, too; I had always been expected to pick them up intuitively as most neurotypicals do, but now I feel better about asking specific questions of trusted friends and family members so I can learn the unwritten rules. I also see a counselor now who is helpful and explains them in logical language. Specifically, I never understood why people got upset when they received an honest answer to a question they asked. Pre-diagnosis, I assumed I had given the wrong answer somehow and tried to keep my mistake a secret. Now, I explain the situation to someone I trust ("Mom, my friend just asked me if her story was good, and I told her that the characters were interesting but the pacing was inconsistent. Why did she get mad?") and that person will do his/her best to explain ("She was looking for support, not the actual answer."). This has made me feel MUCH more confident in social situations.
Finally, knowing that I have trouble focusing due to executive dysfunction and not laziness has allowed me to be gentler with myself and actively work toward being able to manage my time. Now, I make to-do lists so I don't forget the things I have to finish, organize my files to the best of my ability so I don't get overwhelmed looking for something, and ask for help when I need it. I like to set a timer and work on one task until it goes off, instead of staring into space and wondering why I can't just snap out of it and work like everybody else.
Obstacles I have overcome: High school was VERY difficult for me. Between the giant building I always got lost in, the sea of students all making noise and behaving unpredictably, the fast-paced classes that were impossible to focus during because of all the potential distractions, and my lack of self-awareness at the time, freshman year was the worst year of my life. Things got so bad that the guidance office helped me transfer into a smaller program that focused on self-directed learning, projects, and team-building. That was a much better fit for me, as I only had a small handful of teachers, students, and classrooms to keep track of and I could pursue my interests while also completing the high school curriculum. In that case, I overcame the obstacle by switching my environment to better suit my needs. I have also had to adapt to my environment to get around obstacles. For example, I got around the problem of getting lost frequently by carrying cards with directions on them that I can check whenever I am uncertain.
I think that my disabilities have helped me solve problems and consider them from many angles. With my detail-oriented mind, I am often able to notice solutions that others miss.

No comments:

Post a Comment