14 Sep 2024
The Early Signs
Suspicions arose when I was about three years old. A family friend, a guidance counselor at a school, suggested that my mom have me assessed by a child psychiatrist because I was a toddler who couldn’t speak. My mom followed her suggestion and had me evaluated at a child psychiatry clinic, where they ran various tests and diagnosed me with a “speech delay.”
This was in the late 1990s when it was still believed that autism in girls was exceedingly rare, if not nonexistent. However, the “speech delay” diagnosis was enough to let me into a special needs school, where I first began speaking. My teachers realized I didn’t have any intellectual disabilities, so I eventually left my special needs school for a mainstream one.
My communication struggles persisted. I was selectively mute and unable to talk to most adults unless strongly prompted to or told what to say. I still recall my mom encouraging me to make eye contact and say “please,” “thank you,” “yes,” or “no” whenever an adult spoke to me. I spoke out of necessity.
I was, however, able to communicate with my peers but was a bit of a social pariah. I had friends in my early childhood, but navigating social hierarchies proved much more challenging in adolescence. I eventually became better at communicating, and if you know me, you’ll realize I am quite verbal and have developed a lot of coping methods to appear “normal”.
The Later Years
When I was about eighteen years old, someone who knew me closely made an observation after watching me reach a ridiculously high level on an airline entertainment system’s version of Tetris.
“You’re autistic,” he said.
He was on the autism spectrum and was much more knowledgeable about it than I was, so he didn’t make the observation out of thin air. But his comment puzzled me because I didn’t see myself as similar to him or perceive myself as unusual; I thought I was just a quiet young woman who engaged in stereotypically nerdy interests like everyone else at the nerdy STEM schools I attended. I didn’t believe him.
I didn’t believe him because according to the top results I found after Googling “What is autism?” autistic people didn’t have empathy, and they only thought in facts. That wasn’t me. I was very imaginative and empathetic—too empathetic, I would sometimes say. I am a very sensitive person who would cry at the sight of a shrimp being boiled in a pot of water.
I continued to live my life normally. I attended college, studied abroad, and had a great four years because I was immersed in subjects I loved—animation, film, 3D modeling, graphic design, and computer science. I really enjoyed my college education despite having almost no social life, which admittedly bothered me from time to time.
After graduating, I took on a few jobs until becoming an instructor at an extracurricular coding school for children in New York. Because the school attracted many children on the autism spectrum, I was given an opportunity to undergo training with the International Board of Credentialing and Continuing Education Standards to understand and help autistic children.
It was during this training course and my experiences teaching autistic children that I came to a slow realization. I began to wonder if the comment on the plane was true. I found myself sincerely relating with the autistic children under my tutelage—I understood their struggles and was able to connect with them in ways most people couldn’t. I intuitively understood that they were feeling stressed in an unfamiliar environment and were overwhelmed by certain noises and lights. I understood that they needed time alone to decompress, and I understood that they needed to rock back and forth or flick their fingers to cope with their anxiety. Those were all things I needed to do to cope with my struggles, too.
Obtaining my Diagnosis
Even though I no longer completely doubted the possibility of being autistic, I didn’t have the motivation to seek a diagnosis because I was entirely focused on moving to the United Kingdom to be with my long-term, long-distance boyfriend (now husband).
Moving, however, proved to be an incredibly daunting experience, even though I had planned it for several years. I missed my home and my family much more than I expected to. My only consolation was a visit back to New York, which I had scheduled at the end of the year. But my plans were abruptly canceled when COVID-19 emerged, and the world went into lockdown.
During the early days of my externally imposed isolation, I sought something to watch on Netflix. I found a Reddit thread about a show called Love on the Spectrum and casually clicked on it, wondering if it would be worth watching. One Redditor asked if the autistic women on the show “masked,” which seemed like a strange word to me. I Googled it and quickly learned that women on the autistic spectrum present differently from men on the autistic spectrum. In other words, women were more likely to hide their autistic traits, which was something I unconsciously did throughout my entire life.
I also realized that when the possibility of being autistic was first brought to my attention, I was given false and outdated information from the websites I Googled. Autistic people do, in fact, have empathy and imagination—they just express them in different ways.
The missing pieces of the puzzle fell into place, and it was then that I became convinced that I was on the spectrum.
I booked an appointment with my GP to discuss my suspicions and was given an appointment with my local autism diagnosis center three years after my initial call. I was gobsmacked at the long waiting time but was willing to wait.
Three years later, at the age of twenty-eight, I was finally diagnosed with Autism Spectrum Condition. Had I been diagnosed earlier, I would have been given the label of Asperger’s Syndrome. You may be asking yourself a few things—why “Autism Spectrum Condition”? Isn’t it “Autism Spectrum Disorder”? And what happened to the term “Asperger’s Syndrome”?
Semantics
I’m not the type of person who likes to make a big fuss over semantics, but there are a few reasons why I use these words the way I do. You may have also noticed that I use the phrase “autistic person” instead of “person with autism,” and there is a reason for that, too. I’ll go over that shortly.
Firstly, Autism Spectrum Condition is a term commonly used in the UK’s National Health Service and is more widely used among groups and institutions that want to promote autism acceptance. The reason for this is that the term “disorder” implies severity and suffering and encourages stigma. The term “condition,” on the other hand, refers to a state of being.
The term “Asperger’s Syndrome” fell out of favor when it was merged with Autism Spectrum Disorder in 2013 in the DSM-5. The reasoning for this is many symptoms of Asperger’s and ASD overlap. It also didn’t help that Hans Asperger, who Asperger’s Syndrome was named after, was eventually discovered to have collaborated with Nazis and sent his patients to their concentration camps.
Lastly, among autistic people, the phrase “autistic person” is generally preferred over “person with autism” because the latter implies that autism is something that can be taken away from a person or, in other words, cured. Autism cannot be cured, and not every autistic person wants to be cured because they see it as an indelible part of their identity.
With that said, I want to clarify that I won’t be offended if you use the terms “Asperger’s Syndrome,” “Autistic Spectrum Disorder,” or “person with autism” when you have a discussion with me. I don’t expect every person I meet to be knowledgeable about autism. If you do, however, read this and make an effort to understand why certain terms are preferred over others, I would think you are awesome.
Why I’m Telling You All This
So, now that you know my story and have gone over semantics, you may be wondering: “Joy, why are you writing this?”
Ever since receiving my diagnosis, I have been very open about it in my personal life, but I didn’t know how to go about revealing it professionally or publicly. I figured the best place to start would be on a blog on my very public website. Autism isn’t something that can be easily explained in a few social media posts, and I don’t think I can adequately explain it in a single blog post, either, but I’ll try!
Autism is a complex neurodevelopmental condition and disability that affects one’s communication and social skills. Everyone on the autistic spectrum is different, but in general, it is characterized by:
- Social communication and interaction challenges (e.g., difficulty understanding nonverbal social cues and interpreting speech literally)
- Repetitive and restrictive behavior (e.g., preferring to have a strict routine, preferring to eat the same foods, repetitive movements such as rocking back and forth, or hand flapping)
- Sensory differences, such as over- or under-sensitivity to light, sound, taste, or touch
- Highly focused interests or hobbies
- Extreme anxiety
- Meltdowns and/or shutdowns
Source: https://www.autism.org.uk/advice-and-guidance/what-is-autism
Upon reading this, you may be thinking to yourself, “Wait, I get socially anxious, and I have strong interests, and I don’t like certain smells or sounds… does that mean I am on the autistic spectrum? Isn’t everyone a little autistic?!”
And to that, I’ll say, “I don’t really know you, internet stranger, so I can’t say whether or not you are autistic. However, it is possible that your experiences could stem from psychological trauma or maybe even ADHD, which has many overlapping symptoms with autism, so it would be wise to get professionally diagnosed to rule out other factors. Also, no, not everyone is a little autistic. You are either autistic, or you are not, and not everyone who is autistic is the same.”
As you can see, there is a lot about autism to discuss, and I don’t think I can go over every little detail in this blog post. The main point I want to get at is that I’m autistic, and I want to tell you what that means for me.
I don’t want my story to elicit pity or make people feel they must be careful with what they say around me. I am proud to be autistic, and I want everyone to know about my challenges and strengths. I am also easygoing, if not a bit passionate about certain things. You may have heard that many autistic people exhibit black-and-white thinking; this was true for me when I was younger and is still true to a certain extent, but as I grow older, I try to see nuance and view things from different perspectives. So please don’t feel like you have to censor yourself around me unless, of course, you intend on seriously demeaning me; in that case, then please, do censor yourself.
I also understand that there is still a lot we don’t know about autism, especially autism in women, and a few years from now, some of the information and terminology I’ve outlined might be viewed differently. I’m not a seer (even though I would like to be), so I can’t know for sure how people will view autism in the future, but I can tell you that I, like every other autistic person in the world, want to be treated with respect and understanding.
And that understanding starts with realizing that our brains are a bit different.
This isn’t something I decided on a whim to gain attention; I never really wanted to be different. Rather, other people have observed me as different whether I wanted to or not. Instead of letting people make assumptions about me, I would rather control my own narrative by educating people about the realities of being autistic.
The Realities of Being Autistic
My autism diagnosis has helped me understand myself more, allowing me to give myself grace and set stronger personal boundaries. It has also helped me realize that there are some things I find a lot more difficult than neurotypical people, and I will need support and accommodation to meet neurotypical standards. For example, I struggle to follow long verbal instructions and might need things clarified or written down in a clear and simple way to complete a task effectively. I might also neglect to do something if it is not laid out as an explicit instruction. Asking, “Could you put the kettle on?” might result in me simply saying, “Yes,” but I won’t put the kettle on until I’m told something like, “Please put the kettle on.”
There are a lot of other things I struggle with that most people might not pick up on. At times, I still find myself unexpectedly becoming mute, especially in unfamiliar situations with rooms full of strangers. This is not something I am consciously able to control; if you find me suddenly becoming very quiet, it’s not because I don’t want to contribute to the conversation, it’s because I find it difficult to be included or might be overwhelmed by something sensory in the room.
I have become better at advocating for myself throughout the years, and if I need something, I will try to make it clear to others. All I ask for in return is an open mind, patience and understanding.
To minimize any problems I might have, I manage my life by setting reminders and alarms and meticulously planning my day. I also review my communications with others to ensure my tone is correct. I am constantly working on improving my communication skills, which may come more naturally to neurotypical individuals but require deliberate effort and practice for me. It’s exhausting, but this is what I need to do to survive in a neurotypical world!
On the other hand, I do have a lot of strengths and talents that often exceed a neurotypical person’s abilities. I am very knowledgeable in my special interests (like autism, as you can see), and I can hyperfocus on tasks. In college, I was the only person in my screenwriting class to finish my screenplay, which was over a hundred pages long. In my Motion Graphics class, I completed a short animation (an incredibly grueling art) called The Commute in less than five months. I also made my Miraculous Kwami Maker in two weeks—the 3D models, texture mapping, C# programming in Unity, everything! One of my proudest accomplishments is finishing the first draft of a young adult contemporary fiction novel in a single month.
(My novel seeks to explore and destigmatize autism through a funny and relatable romantic story centering around a coding competition. I’m looking to publish! Please contact me if you’re interested in helping me on my publishing journey.)
Some people may see this as rushing or not putting careful consideration into my work, but I honestly do get wholly immersed in my tasks and like to see my projects through to completion, and I always try to consider every detail. I know that hyperfocus has its downsides because sometimes it makes me forget to sleep or eat, but when properly managed, I see it as a strength that aids me professionally.
Throughout my life, I have had to overcome extra obstacles that I didn’t even know were placed before me. Looking back and seeing where I am now, I have succeeded in many ways. However, I also want to illustrate how much extra effort is needed to achieve what I do and that sometimes, I need understanding and help with things that most people take for granted. I hope this blog post has helped you better understand autism and, by extension, me! If you’re interested in knowing more, please feel free to get in touch!
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