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My Challenging Autistic Experience

My Challenging Autistic Experience
Many autistic people are born extremely premature. I am a high-functioning autistic who was born extremely premature at 24 weeks. I have overcome many challenges, such as riding a bike or graduating high school 1 year early. These are challenges that NTs think are impossible for us autistics. Some people in the autistic community say, ‘Autism is not a disability, it is a different ability’ and ‘If you've met one autistic person, you've met one autistic person’. As the autistic brain is wired differently, we are more inclined to logical thinking, attention to detail, stimming, routines or patterns, sensory issues, and special interests. NTs perceive us as ‘rude’, ‘having rigid thinking and stereotypical behaviours’, and ‘obsessed or fixated with one specific topic’.

Challenges of My Extremely Premature Birth
When I was born, I was only 33 centimetres (13 inches) long. The healthcare workers taught me to breathe, talk, walk and speak. When I was in my mom’s (mum’s) womb, the chances of my survival were slim. As I was eager to see the world, I took a chance to be born before my due time. I was blue due to lack of oxygen. The Neonatal Intensive Care Unit (NICU) crew was right there to receive me and took me to the incubator that was my crib for four months. NICU doctors did their best to make me breathe by giving medication to mature my lungs. I had a rollercoaster ride for ten days and was trying to fight the sicknesses. In the primary care of NICU, the doctors and nurses were very alert as I would trick them by not breathing at a certain pace. The high-frequency ventilators were my breathing friends and aided me in breathing. I was incubating many times as my lungs were not trained enough to breathe on my own. All the resident doctors would visit and talk in a very soft way to calm me when they did vital checks as I started being stable on my breathing pattern. The nurses fed me with a feeding tube and encouraged me to drink with syringes and then with a special NICU bottle. They helped me to cross other hurdles by helping me coordinate breathing and drinking. Then I graduated from the primary care NICU to secondary care NICU. In secondary care, I had to learn how to maintain my body temperature and I did pretty well with the help of an incubator. Now came another challenge: my eyes. To protect my cornea from getting pulled, the opticians or eye doctors performed surgery to protect my eyes so that I could see my mom (mum) and dad along with the beauty of the earth. Nearing the end of my stay at NICU, I was sent home with lots of monitoring devices. The healthcare provider would visit and check on my well-being. The primary care doctors and specialists play an important role and are channelling the right resources to me so that I can get help for cognitive and physical skills.

Developmental Delays and Elementary School (Primary School)
My educational journey was challenging, as I learnt how to speak late, at 3 years old. At that age, I was classified as carrying Autistic traits, and was diagnosed with high-functioning autism (HFA). First, I was in kindercare. When my mom (mum) dropped me off for kindercare, I did not want to be without her, and I started having meltdowns as she was not there. In preschool, I had constant meltdowns as my mom (mum) always had to be in the classroom. I believe if there was not a significant educational opportunity provided to me, I would not have progressed in my educational life the way I have done until now. In my first year of my educational journey, I ended up in a county school where its principal realised that I was placed there by mistake. This was one of the most significant events in my early childhood because its principal realised it would be a gross injustice to me if I was not provided the opportunity to potential success which she might have noticed in me. I was moved to mainstream education in Kindergarten in Etiwanda Colony Elementary School. I was placed in special education, where I was put on an IEP. I was on an IEP from preschool to high school. The IEP allowed me to learn in mainstream school while receiving accommodations to help. I had an aide, but I had to be provided with an opportunity to study. I had to go to speech learning, and I made up for the lack of pronouns in my speech. I could not differentiate between the words ‘You and I’. Even though my parents’ first language is Hindi, the speech therapist at school and the use of English as a first language at home helped me to master the speech. I believe this was the second most significant educational opportunity where I learnt to convey and communicate with others. In 3rd grade (Year 4), I had to go for OT services. This helped me with my handwriting. Like many autistics, my handwriting is large. OT services helped my handwriting become better. I can write slow and neat, but when I try to write fast, my handwriting becomes large. As a result, I cannot finish any tests in the time limit. Since I was on IEP, I got extra time for my assignments and tests. This allowed me to finish the tests like any other NT kid even though it took me extra time to finish the tests. As a child, I was curious enough to learn basic maths and English. Suddenly, I found that I could do maths multiplication tables in less than a minute. I was given opportunities just like any other kid in class and I grabbed it. Although my eyesight was weak, I was always allowed to sit in the front row of class. I used to get easily distracted by the other kids in class. Sitting in the front row of class helped me focus on what was being taught. Sometimes, I could not finish my classwork and I would bring it home and finish it. Due to my slow handwriting, I would take more time as I had to finish my homework and unfinished classwork. Learning about English, history, or maths, I would slowly write my homework as my fingers were and still are not strong enough to write with pressure. I was given the opportunity to attend the Battle of the Books event in the Etiwanda School District event where I would read books and try competing. I was exposed to the opportunity to attend the competing events and learn what NT kids did.

In elementary school, the educational system opened the door to navigate my learning journey. I was born extremely premature and had many developmental delays. Autism did not stop me from attending mainstream education in school. The path was with twists and turns; I was placed in County School for two months in a preschool setting. In the school, the principal recognised my potential and transferred me to a public school in a mainstream education setting in kindergarten. In a mainstream education setting, I had to attend therapy classes. I would say that I attended four extra classes compared to my peers to be compatible in the real world. Therapy in a school setting made a good impact on me. The speech therapist at school helped me overcome the speech hurdles and narrowed down the communication gap; I could not differentiate between using ‘You and I’ pronouns. ‘You and I’ meant ‘you for me’. It was hard for me to communicate and understand my social world. Occupational therapy improved my fine motor skill (writing legibly), and the Adaptive PE setting helped me in my balancing struggles and other gross motor skills. The educational system helped me not to be a child left behind. The mainstream education setting provided an opportunity to enhance my skills. Maths and reading books always brought joy to me as it was a safe zone or coping mechanism. Due to my high prescription glasses, I was always allowed to sit in the front, which made my academic skills strong. I participated in meeting reading goals and the Battle of the Books competition in my school district event. In 5th grade (Year 6), I broke my left arm in PE class. When I broke my left arm, I had a huge meltdown, and I was taken to hospital. I was out of school for a week and could not participate in PE class. All the students in my class made a card for me to get well soon. Sometime later, I was back in school, but I was with a cast and had to wear a sling. I still could not attend PE and band class due to my broken arm. A lot of students signed my cast, and I was very happy. When my arm healed up, I had to wear an arm brace. I still could not attend PE class due to the brace. While playing trombone in band class, my arm started hurting while holding it. As a result, I had to leave in the middle of class. I missed many weeks of band class. Eventually, my arm recovered, and I was back in PE and band class. To conclude, elementary school was fun with a lot of challenges and therapies.

Middle School (Intermediate School)
Middle school was an experience where I got to learn new things and try to meet new people. In middle school, the classes that I had were band, PE, language arts (English), social studies (history), maths, and science. I had fun in band class as I got to play challenging songs and play music. I tried to make some friends, but I could not make any friends. In 6th grade (Year 7), I was popular. Everyone knew me, but I knew no one. As a result, I could not make any friends. I got good grades (marks) in 6th grade (Year 7), and I was successful. I have been playing piano since I was 6 years old. I have a YouTube channel (https://www.youtube.com/channel/UCGZ6DWkJ33w1ljihO0MihPg), and I have made many videos that show me playing many challenging songs on piano. Near the end of my elementary school, I joined my school band. It was fun learning about the trombone and how to play it. I was in a band for 4 years and it was fun learning about music and playing many different songs. In middle school, playing in concerts allowed us to show off our excellence in music to an audience. It allowed me to get along in middle school without being bullied. I also got selected for an honour band which allowed me to connect with many students from different schools. It was fun learning how to play challenging songs and meet new people. I learnt how to be compassionate for everyone no matter what. Furthermore, I could not make friends, but I was popular as most of the students were nice and compassionate to me. When I tried to make friends, I was forced to try to pass as NT, which exhausted me at the end of every school day. Everyone knew me, but I knew nobody as I had no friends. I tried to make friends, but I could only socialise with my aide, teachers, and other adults at school. It was difficult to make friends as I do not have the social skills to make friends. Even though I joined a chess club in 6th grade (Year 7), I could not make any friends who shared that same interest. I also joined Shark Bytes, a video production and publishing club, after school. In my classes, I did not feel any pressure to pass as NT. The students were nice and compassionate. I went to India with my family for 1 week in November. After returning to the US, I acquired a special talent to speak in different English accents such as American, British, Indian, Australian, New Zealand, and many more. It was fun to learn to try new accents. My teachers were amazed by my ability, but most of the time, they could not understand me. My teachers told me to stop speaking in a thick British accent as they could not understand me. The ability stayed, but eventually, I reverted to my American accent even though it was monotonous. In 7th grade (Year 8), I still could not make any friends. I could only socialise with my aide and teachers. All the students were talking about games such as Fortnite and Minecraft, which I did not play. The games I played during that time were Clash of Clans and Grand Theft Auto. I also learnt to solve the Rubik’s Cube at that time. No one was interested in those activities except me. I acquired a special talent to convert Celsius to Fahrenheit and vice versa without a calculator. For example, if you ask me, ‘Convert 23°C to Fahrenheit’, I answer ‘73°F’ in seconds. All my classmates and teachers were amazed when I demonstrated this ability. No one knows how I can do it, and I cannot explain it. In 8th grade (Year 9), I still could not make any friends. Trying to pass as NT did not work, and I was exhausted at the end of every school day. The only time when I was calm was when I was engaging in my special interests. Fortunately, I got 10 minutes of free time at the end of each class period, except band and PE. Reading about the different types of electrical plugs and voltages soothed me and the special interest was a safe zone. Middle school was an exciting experience even though I could not make any friends.

High School (Secondary School)
My high school experience was fun with a lot of bullying and challenges, even though most of it was online due to COVID-19. I attended Etiwanda High School from August 2019 to May 2022. Most of it was online due to COVID-19, but I was successful and graduated 1 year early. I started high school in August 2019 with the intention of making friends. As soon as I entered high school, I thought ‘High school is only made for NTs’. This thought crossed my mind as I saw that everyone had friends and cliques. I was the only one in the entire school who did not have any friends. I tried to start a Rubik’s Cube and Sudoku club at my school, but I could not find anyone to help. Being autistic, it was hard for me to make friends. Some students started stalking and bullying me for being ‘different’, talking in a monotonous voice, and always ‘talking about that one thing’. My special interests in high school were time zones and electricity (plugs and voltages). I knew everything about them, and I could happily infodump about my special interests to anyone. Since I was worried about the large crowds and bullies, my teachers allowed me to leave 1 minute early from my classes with my aide. However, some students started stalking and bullying me, and I was forced to try to pass as NT, which was exhausting and tiring. I felt like I had to pretend to be someone else to interact in high school. I used to come home every day feeling exhausted and tired from trying to mask my autism and pass as NT. I spoke with an Indian accent when talking to my parents, but I could switch to my American accent when I talked with my teachers, even when the school shut down. Before the pandemic, the accent switching caused me to get bullied. When the school shut down, I completely stopped my American accent as I knew it was monotonous, except when talking with my teachers and classmates on Zoom. Online classes are better for me as I can finish my work with no distractions and pressure from the other students.

In 9th grade (Year 10), most of the students in my high school used to participate in after-school activities and clubs after school and still have time for homework. They never used to get distracted by the other students. Often, my classmates in my classes spent time socialising and using social media. I did not use social media as I knew of the dangers and online predators. The other students were always being mischievous and bad. They always wanted me to get in ‘their group’, which consisted of using and recording on TikTok, Snapchat, or Instagram. Many students used to eat their lunch in the cafeteria, and they used to blast music from their speakers. Talking to my teachers and aide was easier than talking to my peers. At lunch, I tried to look for other students to make friends with, but they were always playing games and socialising. I used to solve my Rubik’s Cube at lunch, and no one would come to sit next to me to socialise. School started at 08:05 (8:05am) and ended at 14:55 (2:55pm). On Fridays, school started at 09:05 (9:05am) and ended at 14:55 (2:55pm). In 9th grade (Year 10), the classes that I had were Computers, Biology, Spanish, PE, Maths, and English. Each class period was 54 minutes, and on Fridays, each class period was 46 minutes, which consisted of going to different classrooms in different buildings every hour. In class, I used to get so distracted by the other students in class that I used to get all the classwork home. As a result, I used to spend a long time on homework every night. Sometimes, I used to spend so much time doing unfinished classwork that I had to turn in my assignments late. Fortunately, since I had an IEP, I was allowed extra time for assignments. During test times, I used to get so distracted by the students entering and leaving the classroom, and my slow handwriting and distractibility caused me to spend nearly 2 class periods on my maths tests. Sometimes, I used to spend 1 hour and 30 minutes (90 minutes) on the test, and this caused me to miss my next class. Fortunately, since I had an IEP, my teachers were understanding even though I had to miss my next class to finish the test. This always used to happen in maths class. I knew the concepts, but I could not finish the tests on time. Sometimes, in biology class, I used to take a few extra minutes to finish the test, and I used to finish the test after school. In Spanish class, I was able to finish the test within the class period; that class period was for 1 hour and 10 minutes (70 minutes) and 50 minutes on Fridays. In English class, I used to finish the tests within the class period. Thankfully, I took my final exams, which were 2 hours long, in a separate setting in the school to not become distracted by the other students. I was able to finish my maths final exam in 1 hour and 50 minutes (110 minutes), but I finished my English final exam in 2 hours and 15 minutes (135 minutes).

COVID-19 shut down schools in March 2020. When the school shut down, I was relieved of the stress of passing as NT and bullying. The school shutdown happened for 1 year and 6 months. Even when school reopened full-time, I chose to stay at home due to fears of getting infected with COVID-19 and fear of bullying. I was worried that the other students would bully me for wearing a mask. During the remainder of my high school at home, I accomplished many college classes while taking high school classes. I graduated 1 year early, and I achieved many accomplishments, such as National Honor Society, California Scholarship Federation, and many more. I even got a ‘Soaring Through Distance Learning’ yard sign as I accomplished so much during online classes. Personally, online classes are better as I got to work with no distractions. During online learning, my classes were from 08:15 to 13:45 (8:15am to 1:45pm), 08:30 to 14:00 (8:30am to 2:00pm), and 08:54 to 14:20 (8:54am to 2:20pm). Each class period was 1 hour and 30 minutes (90 minutes) to 1 hour and 32 minutes (92 minutes) long. Sometimes, during online classes, I was able to finish my assignments and projects within the class period as the class duration was longer and there were fewer class periods. I was able to finish the classwork during the Zoom classes. Sometimes, I even finished my tests and exams within the time limit as a result of the longer class periods. I was relieved of the stress and meltdowns of rushing from one class to another class, passing as NT, and bullying. I could not make any friends, and I was bullied so much. In conclusion, high school was a stressful time for me with so much pressure and exhaustion from passing as NT.

In 8th grade (Year 9), I was bullied by a student in PE class. He was always verbally bullying me and saying, ‘you are defeated’ and ‘go to jail’. Then, on one bad day, he brutally pushed me on the locker room bench and ran away from the scene. My right arm hurt so bad, and the supination was unbearable. At that time, I could not advocate for myself, and I could not stand up for myself to bullies. After the incident, I had a meltdown and could not recover. I was always scared in PE class as I was worried about bullies. Thankfully, I did not experience any bullying after the incident. When I started high school in August 2019, some students started stalking and bullying me. In my high school PE class, some students started saying racially abusive comments to other students, and unfortunately, I was always caught up in trying to stop them. Then, the bad students started throwing rocks at me and some other students. I talked to my teacher, who told me to ignore it. I could not ignore the bad students. In November 2019, after school was dismissed, two students pushed me in the building hallway. They ran away from the scene, and I had an extreme meltdown. One of my teachers calmed me down. After I came back home, I was scared of attending school. By next week, I was confident to attend school, but my aide was replaced as he forced me to lie to the principal by saying that I tripped in the hallway. The security camera footage showed that two students pushed me as I was exiting the building hallway. After the incident, my aide forced me to lie to the principal by saying that I tripped in the hallway. He told me that saying ‘someone pushed me’ would get me into trouble. I was forced to try to pass as NT, which was exhausting and tiring. I felt like I had to pretend to be someone else to interact in high school. COVID-19 shut down schools in March 2020. When the school shut down, I was relieved of the stress of passing as NT and the fear of bullying. The school shutdown happened for 1 year and 6 months. Even when school reopened full-time in August 2021, I chose to stay at home due to fears of getting infected with COVID-19 and fear of bullying. I was worried that the other students would bully me for wearing a mask. During the remainder of my high school at home, I accomplished many college classes while taking high school classes. To conclude, we autistics are bullied so much at school and work as NTs are not tolerant of any neurological differences.

Finally, my autistic experience is not easy. My educational journey from kindercare to high school was challenging with many twists and turns. Now, in September 2022, I will be attending University of California Irvine (UCI) in Computer Engineering, and I am excited for the new chapter in my life! I do not have enough words to thank my parents, teachers, and therapists for being supportive and caring for me throughout my rollercoaster educational journey from kindercare to high school. Autism is not a disability; it is a different ability which does not make me any less intelligent!

Happy #NeuroPrideDay everyone!

SRSAutistic 08/08/2022 21:50 (9:50 PM)


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