Why ‘You Don’t Look Autistic’ Hurts
I was first exposed to the idea of invisible disabilities from a classmate in my first year of college. I had been diagnosed with complex post-traumatic stress disorder a few years back and struggled with the word “disability,” mostly because of our historical association of disability with something you can see. My classmate, who suffered chronic pain, was trying to spread awareness of invisible disabilities and was speaking at an event on it. I talked to her for nearly an hour, and by the end of it I was absolutely convinced that her condition was a disability—but so was mine. 12 years and an autism level 1 diagnosis later, I’m keenly aware of the challenges invisible disabilities present to those they inflict.
The Myth of the “Visible” Disability
When less was known about autism, many people—myself included—attributed the condition to what is today known as level 4—basically nonfunctional; unable to live on their own, nonverbal, sometimes aggressive, and a nightmare for any parent. Chronic pain, whether physical or mental, such as that suffered by those with illnesses like multiple sclerosis (MS) or post-traumatic stress disorder, often don’t show their symptoms outwardly. Even doubling over in pain or putting your head in your hands can be viewed as a symptom of drinking too much alcohol the night before. And it’s not like someone doubling over in pain is in a great position to explained to a concerned colleague what’s causing their pain.
Because the few outward-facing symptoms of invisible disabilities are often the same symptoms of many other problems—a headache can be caused by forgetting your morning coffee, or not drinking water, or the screaming voices of auditory hallucinations paired with the constant tactile hallucination that someone is scratching the back of your head, and you wish for just one moment of peace from the endless scratching. Hello, (scratch scratch) welcome to (scratch scratch) Starbucks, can I take (scratch scratch) your order?
When someone walks with a cane, or is bound to a wheelchair, there is no need to prove they have a disability. When your disability is invisible, it can feel like a constant struggle to prove your disability exists, is valid, and is as debilitating as you say it is. Just because you can go to work and make it through your day doesn’t mean it’s not taking an enormous amount of energy and effort—spoon theory explains this well. I find that I constantly need to remind people of my limitations, despite these same people knowing about my condition. It’s easy to forget, I guess?
When someone doesn’t “look” disabled, it’s like measuring volume with a ruler. If the water is in a nice cylinder and you have a calculator or pen and paper handy, you can figure it out by careful measuring, but the amount of work that goes into that analysis—and the fact that neurodivergent symptoms don’t fit nicely into a one-size-fits-all cylinder—complicates the process of verifying someone’s invisible disability. Why do I need to prove I can’t do something. You wouldn’t tell someone in a wheelchair to just get up, try and walk—maybe it’s all in your head. And if you think that’s extreme, I was explaining a limitation to a colleague recently, and they told me to, “Stop being such a bitch and man up.”
Understanding Autism as a Spectrum
I have curated my TikTok feed to be mostly other autistic creators, and it’s still surprising to me to see how different everyone’s experiences are. I thought I didn’t have a lot of sensory issues with clothes—but I also wear the exact same clothes every day and have for the past 30 years. I try to avoid shirts with buttons and zippered hoodies and jackets are fine if I’m wearing something to keep the zipper from touching my skin. I don’t like the type of elastic bands that cause crunchy hems, especially on sleeves. The same applies to foods—I don’t eat anything with bones, because the idea of accidentally crunching a bone in my teeth is revolting. I could barely type that without shuddering. And that’s just one piece of my autism. But even my zipper and bone aversions can be different for someone else who has those same concerns.
But in that diversity of challenges, I’ve seen a diversity of strengths as well. I follow autistic creators who showcase how they travel around the world, who speak in front of large audiences to spread awareness. And I’ve seen content from councillors, university professors, and life coaches. Someone who likes video games won’t like every game, and in a similar fashion, not all of these creators resonate with me—but we’re all doing something similar, and that diversity means that anyone can find people who speak a language they are trying to understand.
There’s been a growing trend of identifying TV characters who are autistic, but I find that leads to stereotyping and misconceptions. I’m nothing like Sheldon Cooper or Shaun Murphy—the two characters I most often see references to. My diagnosis is level 1, support required. I’ve also seen F84.0 recently in a contact’s diagnosis. One of the biggest problems in autism advocacy is the wide range of symptoms and experiences—because we all experience autism differently, it’s difficult to communicate a clear set of struggles to neurotypicals. For every autistic person who struggles with buttons, there is another one who only wears buttoned shirts. We need to define autism as debilitating in all cases, but in different ways—and then treat everyone as a unique case, which we should have always been doing for everyone anyway.
The Challenges of “Passing” as Neurotypical
I’ve spoken before on masking more than once, but it bears repeating: neurodivergent masking takes a massive toll on mental health. I only just this year, put my foot down and refused to participate in office parties. I explained to my boss that I don’t ask for a lot of workplace accommodations—but I had realized that by showing up to parties and making silly small talk, I was accommodating others. I didn’t ask for accommodations—I just stopped accommodating everyone around me. I greet people when we make eye contact or the first time we talk in the day. This means that for some of the people in the office, I don’t say hi even though we work in the same area all day. Not trying to fit into the office dynamic has reduced my exhaustion and stress at work—I talk to people when I need to; they talk to me when they need to. That’s all I need. Oh, I also try not to answer my phone—that’s what I really need.
I celebrate this success at work, but it still took two years and an autism diagnosis to pull it off. Before my diagnosis, I couldn’t explain why I didn’t like answering the phone. I framed it as I prefer email, so I won’t forget, but really it was just that I hate answering the phone. I hate talking on the phone. I get emails every day that my voicemail box is nearly full, and I’m hoping it stops letting people leave voicemail once it fills up.
One of the greatest tips I’ve ever learned, was to be successful when you do need to engage in small talk, say something obvious. The easiest option here is the weather. I’ll stand there and remark, “Oh, it’s raining.” Small talk task successfully completed—back to work. When someone has specific questions, and that can be about work or personal, I find it very easy to answer—but I don’t know how to ask people questions about things unless I have a specific prompt (a schedule conflict is easy—how your weekend was is hard). To solve this problem, I memorize one fact about each person in my office and make all my small talk about that topic. It’s not a good solution, but it’s the best I can do, and I explain to people why I do it.
I have a colleague who always quotes true crime documentaries she’s watched, so I ask her about that. Another loves camping, so any time she has time off I ask if she’s going camping. Another colleague likes golf, but after an injury he can’t play, so now he plays poker. I must remember to ask about poker, not golf.
The Impact on Mental Health
Like masking, I’ve spoken multiple times on mental health, most recently autistic burnout—a special edition version of burnout unique to autistic individuals. I moved two weeks ago, and while the move should have been exciting—bigger space, better location—I have struggled with the disruption to my usual routines. My supermarkets have changed, my route to work has changed. Everything about the new place is objectively better, but I still struggle with anxiety in the new home. Every creak of the floors is different. The texture of the floors is different. The bedroom doesn’t have carpet (I like carpeted bedrooms). And this is my home, which is the one place you should always be comfortable. The self-talk that I am wrong here, then pushes me to just get over it, a type of internalized ableism—self-inflicted internalized ableism. It’s the same thing when I feel anxious at work or start to think I don’t want to do my job. I’m just weak and need to overcome this bad day. Or maybe I need real help and should be reaching out to someone who can help me.
One of the ironies of autism is for a lot of us, we struggle with social interaction. I tried joining an autism group on Facebook, but I found it overwhelming and stressful. I tried to talk to a therapist, but I can’t help but feel that I’m wasting the resources that would be better spent on someone with “real” problems. More internalized ableism.
TikTok has been the place where I’ve had the most conversations about autism—and learned the most about it. I’ve been able to discuss it a bit on my streams, but I try to avoid bringing it up unless someone asks about it. I don’t want my streams to be right up in your face about it—I want it to be about vibes and enjoying my flat, monotone voice.
Advocacy and Awareness
This isn’t exclusive to neurodivergence or people with invisible disabilities, but nobody in this world can be counted on to advocate for your specific needs. I think a great example of this is the recent news about Autism Speaks pulling out of Canada and the celebration the autism community has had since the news broke. I have not interacted with the organization in any way, but I understand that autistic people want to embrace neurodiversity, which conflicts with the goals of Autism Speaks. I’m not really the best person to speak on this—I’m only noting the mass celebrations I saw on social media after the news broke.
But it does highlight the importance of educating others about invisible disabilities and neurodivergence. I see this every day, as mentioned above, in TikTok, where autistic creators share their stories and experiences. TikTok’s algorithm features the ability to feed people the content that they want, so it’s no surprise that an autistic person would have autistic content in my curated feed—it also means that it will be of limited use for reaching neurotypical people. For that, we need allies. The autistic bakers could buy allies with fresh apple pies, but we are better off producing content that is wide reaching and also serves to spread awareness. To this end, I have a TikTok channel which is entirely about autism, but I also post YouTube videos and stream on Twitch, and while autism is not the main focus of those channels, it is there—it’s there in how I speak, in how I choose games to cover, and the things I find interesting. Even in the way I play games sometimes. I take natural opportunities to talk about it, but I don’t make it an autism stream. And it doesn’t take much to be an ally—a like, a follow, a comment. Anything that helps spread that type of content and help it reach a wider audience.
Being a responsible autistic creator also means staying on top of language trends. The term “high-functioning autism” was recently removed from common language, instead focusing on the levels of autism and the associated support needs of those levels. Asperger’s syndrome has similarly come away from use, but I believe that’s more of a medical diagnosis thing than a common language thing—either way, both phrases fell out of use except in historical contexts, and the autism community has moved to a new system. That said, it’s ultimately up to the individual to best describe themselves, and so when someone describes themselves as high-functioning autistic, I don’t push back—but when someone asks me if I’m a high-functioning autistic, I offer a polite correction. This must always come from a place of assuming the best in others, as hostility only breeds indifference.
Practical Strategies for Support
So, you’ve got your diagnosis and you’re ready to take the next step. What is it? For me, it was communicate with my family and explain what this diagnosis meant. It didn’t mean that I was a different person—it meant that pieces of my personality may not have been my authentic self, and I was going to begin exploring where my true self and my masked identity split—and start working on that part of my life. This meant making changes in my life to things that had bothered me, but I didn’t have an explanation for—grocery shopping, for example. I knew I hated supermarkets—but why? Well, now I have the answer—they’re crowded, with bright lights and loud music, and only one entrance at the front of the store, so once you’re deep inside you’re stuck. At some, you get locked in when you enter until you pay or do the walk of shame without buying anything. I started ordering groceries for pickup and then moved to grocery delivery services as a self-accommodation. This was a great change that allowed me to prioritize my own mental health without sacrificing the quality of the food that I ate.
The next step was to ensure that I had appropriate accommodations at work. Luckily, I already had an office with a lockable door—and a dimmer switch installed for my lights. These two privileges became critical supports to my continued success as I began to unmask at work. Unmasking at work meant avoiding unnecessary social interactions, having uninterrupted time where I could work on projects, and turning my phone around when I had to go into a “no calls” state. I still have some people who insist on using the phone to communicate—otherwise everything could be done via email—but nothing is ever 100%. These were easy accommodations to get because none of them required major changes by the company, and all of them were reasonable within the description of my position. I enjoy being in the office, but I did find that having a dedicated work from home day each week allows me to stay on task, but again, this is a privilege offered to many of the staff in my office, so getting this change was also not really seen as an accommodation.
I’ve talked about sensory friendly environments before, so I don’t want to spend much time on it—but I will take this opportunity to suggest you go read that article next: here. But since then, I’ve been able to equip my office with Beanie Babies, which are very soft and great to touch when I’m feeling overwhelmed. I’m currently shopping for sensory gadgets that can help—especially in a Teams meeting where I can fidget off camera and not look weird. Hopefully not look weird.
The Power of Neurodiversity
Some people, me included, like to describe autistic strengths as “autistic superpowers.” This silly little joke references the fact that autistic strengths are noticeably different than the strengths neurotypicals have. My boss will make these beautiful graphs to present data in a way that is digestible by executives—and he shows me the graphs and I guess I make a face, because he rolls his eyes and changes to the Dataset tab. The Dataset tab is where I like to live, and then I like to work in Python or Excel to twist the data around until it says what I’m told it’s supposed to say—but it’s never pretty. It’s summarized, it’s organized, but it's ugly. Just the way data should be. When I read programming code, I can visualize it in my head. I really enjoy the GameMaker software because it has both Visual and Code, so I can see both views on the screen. If only I could get it working on my Mac, I might do something with it.
I have severe social deficits, but fuck that—I’m good at focusing on my work. I get overwhelmed when given too many tasks at once, but fuck that—I can complete tasks quickly when managed appropriately. For every perceived deficit an autistic person has, there is a strength somewhere behind it. Rather than focusing on the things you can’t do, focus on the things you can. Not just can do—excel in. I excel in data analysis and pattern recognition.
We hear a lot about the threats to biodiversity in our world—and now we have an opportunity to embrace neurodiversity in the world. A neurodiverse world means we can solve more problems, as neurodiverse people are no longer restrained by a society that wasn’t made for them. When we are acknowledged for our strengths, and not burdened by our weaknesses, there is nothing we cannot overcome—and this benefits everyone, so it’s in neurotypical’s best interest to find a way to coexist with us in this new, more efficient world. The neurotypicals can be the managers—I don’t care about telling people what to do. Let me be an advisor—an analyst—a data scientist—and then take my ugly data and make a pretty graph. Let’s work together to solve the world’s problems, and maybe coexisting won’t seem so farfetched.
In Closing
We are already a neurodiverse species—it’s simply time to embrace it. Once we’re working together harmoniously, with everyone’s best interests at heart, we will be a more successful people. Is this chaotic optimism or a realistic future? I don’t know—but autism is hereditary. Every autistic person who marries a neurotypical person is helping make neurodiverse the new majority. We can all put on masks and have some autistic kids if we need to—don’t force us down that road.
Wow, that got dark in the end. But for real—let’s be teammates, not enemies.
