Here on the blog, I feature a bi-weekly interview with an expert on how to write about a character with a chronic illness or disability that they struggle with. While I still recommend getting a sensitivity reader for your work, use these posts to consider how you can accurately portray disabled characters. Today’s feature is autism with Aaron Parsons. Shout out to Aaron for taking the time to answer my questions!
1. Could you describe your symptoms and the experience of discovering them?
In high school, I was bullied on a daily basis and composed music in my spare time to cope with the pain. I recorded an entire album with a message for my fellow students to stop bullying me. I tried to perform in front of the school talent show, but I wasn’t accepted to perform and spent all of my spare time trying to figure out other schemes to get my fellow classmates to hear my songs. My few friends convinced a DJ at a high school dance to play my music, which resulted in my suspension.
My parents decided to take me to a psychiatrist. They felt my focus towards gaining respect from my peers as a musician was going to affect my sanity. The psychiatrist labeled me with the outdated diagnosis of mild Aspergers Syndrome and discovered that I have very strong interests and opinions. He noted my persistence came from my need for closure to complete any task I was passionate about. He also noted that my body language and tone of voice never matched the emotions I felt when communicating yet I could be extra-sensitive to the feelings of others. He noticed my exact emulation of my favourite music artists (with original lyrics and notes, of course).
Later on in life, I decided to do more research and discovered that some of the reasons I never fit in while I was in high school was because I couldn’t read subtle social cues. I found conversations hard to keep up with (being infantilized as a fundamentalist Christian made this worse) and would contribute or interrupt at inappropriate times. Comprehension of metaphor, irony, humour, and nuance was also hard for me to understand, because I viewed the world in black and white. I called spades spades when I should have used more tact. It also didn’t help that my interests were video games and Calvin and Hobbes rather than cars, sports, MTV, or raunchy teen comedy. Other quirks I’ve noticed about myself are the need for consistency even though I push myself out of a normal routine. I have trouble moving from one task to another when I’m focused on getting a job done. I do love socializing when I’m around those I’m comfortable with but feel very exhausted afterwards.
2. A common attitude toward autism and other disabilities is that people with these conditions have a low “quality of life.” What would you say in response to that?
The quality of life autistics have depends on the privilege they grew up in. I come from a family that is supportive of who I am but is concerned about whether or not I’ll ever live up to their standards of meritocracy and exceptionalism (How many children will I have? Will I be able to make 6 figures to support my wife? Will I ever discover something scientific that will change the world? etc.). I spent most of my young adult years after high school bouncing around call centres because of how good I was at repetitive work on the phone. Eventually I went back to school and tried to start a business as an app developer a few years after graduating. Two years later, I had no choice but to shut down that business. My wife has been the primary financial support for the both of us while I’ve been writing, podcasting, and taking various online freelance work here and there.
Sometimes having people support me can make me feel guilty because in some ways I want to pay them back for all the good they’ve done for me but can only provide in music or other digital things I create. Most autistics I’ve encountered who have difficulty reaching their own standards of self-actualization tend to give up trying. They are stuck settling for a life they feel is mundane even though they want to work in something besides a minimum wage job. They accept that they can’t connect with many people in person. So they sacrifice participating with certain groups to avoid feeling judged or having to “mask” their unique neurology for fear of sensory overload or meltdowns. Some of them desire to fall in love but remain single. Many of them struggle with their need for help with daily tasks even though they deeply desire their own autonomy. There are many autistics who cannot speak but need an iPad or phone to convert text they type to speech. From what I’ve noticed, most autistic individuals aren’t properly raised to be independent so they rely on their parents or closest friends for supports they require while trying to pursue real independence on their own. After doing this too often, they end up in situations where they have to “mask” their autism in daily submission to a normal neurological society, or they constantly put up a fight to be able to live as they are in the world around them where they will never fit in.
3. What are some of your biggest frustrations living with autism?
I think my top frustration is not being hired for work that’s related to my studies (of course struggling to get a job to get experience while getting experience to get a job is becoming much more common regardless of neurology). What makes this struggle worse for me is that I can never determine if I should or shouldn’t disclose my neurological differences to my potential employers. Most of the time, I apply for work without a disclosure. I mask my way through most interviews and sometimes don’t even last a week in certain jobs where they discover I am on the spectrum and fire me on the spot once they figure it out.
Most people think I’m horribly shy. That’s just part of the issue I have as I can be very vocal in a more intimate setting depending on the conversation. My other big frustration is conversation in groups larger than four people for two reasons. First, I have a habit of observing and processing conversations slower than most people. I’m trying to understand the tone of voice, the body language of the individuals speaking, the metaphors and irony used, and if there’s an estimated direction the conversation is going to go. This helps me think of something valuable to say but “having multiple windows” open to watch and analyze what’s going on with a large meeting is overwhelming. As a result, I can’t contribute to a conversation if there’s too much to “read” at a quick pace. Second, I don’t know when someone finishes a sentence so I unintentionally interrupt. This can sometimes lead to some very embarrassing moments (especially in front of a large group of people). Even when I apologize afterwards, it’s difficult not to be hard on myself knowing the conversation could have gone in a different direction had I contributed at the right time.
4. Does anything help make life with autism easier?
I think embracing a stoic mindset that helps me to navigate the world to the best of my abilities helps me be content. While I’m not one to advocate for self-help books, I’ve read a few that have helped me live in the present moment rather than fret about the future. Developing this mindset has helped me to see spirituality, suffering, and failure in life differently from when I did a few years ago. It’s kept me from being too hard on myself when I don’t measure up. Overall, working on my mental health, meditating, and putting my focus on what I’m passionate about helps me take my life one day at a time. Knowing that I have a supportive wife and family who’s willing to listen to me and love me unconditionally has kept me going in recent days of discouragement.
5. Do you struggle with any particular emotions due to your condition?
In the past, anger has gotten the best of me, which has scared a lot of people. For the most part, I’ve learned to control it and have discovered that most of what I’m angry about isn’t really a huge deal. Most of the time, dealing with my anger involves doing something I enjoy or meditating until the feeling passes. Most of the time, it’s very helpful. I still have moments where I experience intense sadness, panic attacks, and internal anger, which leads me to shut down or give up on certain things temporarily. Sometimes if I figure out that I’ve been holding in anger for too long, I need to figure out a way to deal with it constructively. How I deal with this is dependent on the situation.
6. How do other people behave around you? Do they treat you differently?
I have a hard time answering this question. I may be expressing my frustration based off personal assumptions. Sometimes I feel like people see that there’s “something different or wrong about me.” In an effort not to address the elephant in the room, they treat (or at least think about) me like a child or someone who’s one sandwich short of a picnic basket with dreams or aspirations that are never achievable. In high school, I was treated like Bobby Boucher (The “Waterboy”). This caused me to be afraid of everyone and almost give up on life as a teenager until I got into music making. The fear and nervousness still affected my life in college and jobs I’ve taken (besides call centre work) where supervisors would micro-manage my duties, or keep nudging me to ask questions when I didn’t even know what I was doing that was “wrong.” I think with more awareness, some people treated me much better than in my past, but there are still stigmas that need to be removed, such as people implying that even with my neurology I can still fit in certain boxes of exceptionalism.
7. What was your diagnosis experience like? How has your experience with doctors been?
Because of the events that lead to my diagnosis (see the answer for question 1), I felt ashamed and alone, wondering if my parents would send me to reform school or the military. The doctors suggested I would be safer if I attended church more often (that did not turn out to be any better). While I usually feel safe in a doctor’s office, I’ve had some not so great experiences with dentists and acupuncture.
8. Have you seen autism represented in media before? If so, what did they get right and/or what did they get wrong? What are some common pitfalls or stereotypes writers should avoid, perhaps things that are often misunderstood about this condition?
The only show I’ve seen that purposefully represented autism is season one of Netflix’s Atypical. I hate it. While they got some of Sam Gardener’s basic characteristics such as vocal tone, body language, and focus on limited interests, the writers only covered a small range of the spectrum. For example, Sam only has one meltdown in the show and it happens while he’s on a bus. Having a meltdown doesn’t always involve intense crying or curling into a ball. Sometimes meltdowns involve standing in one spot in silence and staring into space while processing the emotions or events that caused the meltdown. Sometimes they do involve echolalia, or repeatedly doing something over and over in nervous-ness. However, the main occurrence that happens during a meltdown is that an autistic has been pushed to the edge of what they can handle and the only thing they can do is give into their desire for safety and comfort. In a sense, in some parts of the show, Sam has mini-meltdowns, but most neurotypicals might need to do some more research to figure it out.
Many think The Big Bang Theory’s Sheldon Cooper is autistic with lots of “Aspergerian” type of quirks. The problem with this diagnosis is that Sheldon can be an intentionally very mean person plagued by OCD. While some autistics can be considered mean or rude, most of this happens with a defensive motive rather than an offensive one. They are usually unaware if they come across as offensive. The show becomes much more offensive in the later seasons because Sheldon’s portrayed as what’s known as a “cute autistic.” In a sense, the objective surrounding his character and story arcs is to win laughs at the expense of his disabilities. The events that actually happen to those on the spectrum that are very similar to Sheldon’s can be at times very hurtful if they happened to autistics in real life.
9. What are things you can’t do because of your condition? What are things you can do?
The worst position to hire me for would be a job as a cashier. A typical stereotype is that autistics are good with numbers. This depends on the individual. For myself, I’m horrible counting money under pressure and was fired for being unable to keep up. This lead to working in inbound customer service call centre jobs for at least a decade. The repetitive procedures and pacing of each call was enough to keep my financial situation in a decent place until I got married. I’ve mostly been able to work on jobs that require little to no pressure, such as minor stocking in a store, janitorial, or other tasks that don’t require multi-tasking or extensive use of short-term memory. If I’m given a long list of oral instructions, I kindly request for them to be written down. If I have to do two or more things at once while on the job, I make critical mistakes and my short-term memory “glitches” because of how much pressure is placed on me. Multi-tasking for me is a big “no-can-do.”
In terms of daily life, I’m able to perform any chore given to me unless it requires heavy lifting. Managing finances can be difficult and sometimes my wife has to keep me in check when I make “larger” purchases. Unless I have no choice, I prefer not to drive, especially if it’s during rush hour. In general, if I have to multi-task or do something within a certain high pressured time-frame, there’s a good chance I’ll either do an average or terrible job, or I’ll shutdown under pressure, put it off until the last minute, or just simply give up trying.
10. What advice would you give to someone who wants to accurately write about a character with autism?
I highly recommend using the resource library on the Autism Self-Advocacy Network for research (https://autisticadvocacy.org/resources/). It is run by and for individuals on the spectrum and gives accurate information regarding how autistics live and react in certain situations without making neurological differences sound like a character flaw.
I think the perfect autistic character is one who will go to any extreme to reach a main resolve in any kind of conflict, whether they want to be accepted by a particular person, group, or society, be able to embrace their identity without having to mask it, or to just be left alone from someone who they are in conflict with. They will eventually succeed or fail getting to this point despite their meltdowns, sensory overload occurrences, or their inability or ability to multi-task.
Aaron is an online content creator, musician, podcaster, and studier of philosophy.