In response to someone saying that they are disabled because of their autism, I’ve seen a lot of well-intentioned but dismissive posts and comments replying, “autism is a superpower or a special ability.”
“Disabled” is not a mean or bad word. By trying to avoid it when discussing autism, we’re making it seem like disabled people should feel ashamed. Autism is a disability which affects people to varying degrees, and that’s ok to acknowledge.
Masking and assumptions about disability
Autism stereotypes, such as the thought that autism is a “superpower” or that we’re all autistic savants, affect our ability to get accommodations for our disability.
I’ve personally felt the impact of many autism stereotypes. For instance, in the process of my diagnosis, I was told how outstanding it was that I could hold a job or go to college. Eric Garcia, a Latino autistic author and reporter, said that people are amazed that he can do such work whilst being autistic.
Due to underrepresentation and misconceptions, the functionality achieved through masking or exhausting oneself can become a barrier to diagnosis and/or accommodation for one’s disabilities.
People tend to believe that because I can push myself to go to the grocery store without having a meltdown or have a job in something non-science related that I must not be “autistic enough to be disabled”. However, autistic people mask their needs in order to fit into our mainly neurotypical society. So by placing judgment on a “performance,” it’s still impossible to know how much suffering the autistic person is going through.
Accommodations and the visibility of disability
Acquiring accommodations can be a double-edged sword for people with autism. While hard to come by, accommodations come with their own struggles. When autistic people are able to gain accommodations for their disability or feel empowered to come up with their own personal plans, their disability can become less visible.
A lot of people don’t “see me” as autistic, but are never going to know the effort and work I put into both my daily life experiences and bigger things. Because I didn’t know I was autistic for so long, I did a lot of work on my own. I tried to figure out how I would be most comfortable in situations and take extra steps to work through things that are harder for me.
You can’t know if someone is disabled just by looking at them, especially when they have the accommodations they need. Ideally, when autistic people can make the adjustments they need, their disabilities become less outwardly visible. That said, being disabled doesn’t have a certain “look”, just as autism doesn’t.
The different forms of disability in autism
Despite ASD standing for “Autistic Spectrum Disorder,” it’s not much of a linear spectrum at all. We can better describe it as a color wheel because no one can be “more autistic” than another person.
By using a linear spectrum, we flatten autistic people’s experiences. “High-functioning people” aren’t pushing themselves enough, while “low-functioning people” have no autonomy.
Sometimes words like high-support or low-support serve as more inclusive descriptors, conveying autism’s impact on the support a person might need. Requiring high support doesn’t imply a person cannot function, but rather that they may just need more accommodations or assistance in their life.
Regardless of the level of support a person requires or receives, autism often causes disabilities in one slice of the spectrum or another. Someone may not need as much help pertaining to certain parts of the wheel, but may need help in other areas.
Art by: Autism Sketches
Disclaimer: Each autistic person speaks and identifies for themselves. Some autistic people don’t like the term Aspergers, while others embrace it. The word has its own ableist history, but isn’t necessarily a slur.
Autism looks different for every autistic person in the world. All of our wheels look different and because of that we have different needs, abilities, and disabilities.
I’m going to break down the wheel using some of my own and others’ experiences, but please know I don’t speak for every autistic person, nor do I claim to!
Social differences are something really difficult to navigate as their expression varies in so many ways.
Social differences don’t always mean a lack of social proficiency. There are some autistic people who are reporters like Eric Garcia or actors like Sir Philip Anthony Hopkins. Personally, I think those two jobs require a lot of social proficiency and they both do amazing work!
I struggle with social differences and so do many other autistic people, as autistic people are much more likely to be bullied than others. I always thought that kids just “knew I was different” and that’s why they didn’t like me. There is also a double empathy problem surrounding social differences and autism. Being autistic affects how I interpret other people’s words, emotions, and actions. I’m not really great at reading between the lines or understanding sarcasm, but I’ve learned a lot through watching other people over the years. It’s kind of like I crash landed on this planet where everyone knows how to communicate “properly” except for me. It’s hard to find people who understand me because of the double empathy problem and it’s even hard for me to try to say what I’m feeling because I stutter and have a hard time pronouncing words sometimes.
Answering phone calls is terrifying and attending job interviews is the worst! I never know what to say or how to say it. Socially, being disabled means that I can’t do all the things I wish I could, I faint in crowded places because of the stress and have had meltdowns at my university campus. I tend to always try and take someone with me if I’m going to a new place, but this isn’t always accessible to me and I have to take extra precautions to ensure I am safe and somewhat comfortable.
Interests are one of the best parts about being autistic because of the joy we feel when we get to partake in the things we love. It’s somewhat comparable to hobbies that neurotypical people have, but far more intense and for different reasons. For neurotypical people, it might be hard to imagine how the need for special interests could contribute to one’s experience of disability.
I don’t have special interests to fill my time, but rather need my special interest to recharge my brain and let my thoughts go smoothly instead of ruminating or having jumping thoughts. My mind so desperately just wants to focus on ONE thing that it’s hard for me to multi-task or put things down.
I get in such a horrid mood if I have to stop something I was working on and I’ll tend to just daydream about it till I can do it again. I can spend hours upon hours without ever realizing the time I’ve spent. My special interests change every so often, but some things stick around, like art!
Autistic people all have different special interests (though we definitely can share some), so it’s weird to see stereotypes that autistic people can only have special interests in trains, weather, or numbers.
A lot of autistic people rely on different forms of repetition, whether this is a routine, verbal repetition, watching/listening to the same things, eating the same foods every day, or “stimming.”
Repetition is something I’ve always relied on to feel secure. I watch the movie Deadpool a couple times a month and every time I see something new or laugh like I’ve never heard the jokes before. I have certain routines I have to follow (like my elaborate skin-care) or my body gets all stressed and I go into panic mode.
This can create very strict schedules for me that bother my sense of serenity. If I have to wake up early for something, I won’t be able to sleep all night because I’ll be so worried about how my schedule will work or if I’ll get enough sleep to function. There’s also a rigidity to ethics and morality; I’ve always been the “goody two-shoes” because once someone told me a rule I stuck to not crossing over that.
Needs for repetition can create difficulties and disabilities in terms of finding a job or attending school. Comfortable schedules for autistic people can be all over the place, and the need to mask in social settings can be exhausting.
Autistic people can be hypersensitive or hyposensitive to different sensory experiences. This means that we may not know if we are hot/cold (hypo) or we may be too hot when it’s actually not that warm out (hyper). Certain lights or noises may be too loud or unsettling for autistic people, while some people may enjoy louder noises because of the sensory experience they produce.
This goes for every sense we, as humans, experience. We may have certain fabrics we can’t wear (curse you sherpa), or have certain foods we can’t eat because of the taste, smell, or texture. Hyposensitivity can also show in some people as not being able to tell if you’re hungry or need to use the bathroom.
The world is very bright and loud, but as autistic people, we do have amazing sensory experiences and ways to help ourselves through overwhelming times. This can include accommodations or simply being there for ourselves by setting alarms to eat or drink water. It can also help to wear noise-canceling headphones in public or even at home. Every autistic person has a different experience with sensory difficulties. Some may have more things they have trouble being around than others, but it’s important that everyone gets accommodations when they ask.
For me, being autistic is a lot like not having a connection to your brain’s emotions. I can get sad and not know why or feel my body stressed, but not have the words to describe why I am feeling that way. This difficulty in describing or identifying one’s emotions is called alexithymia. It can affect neurotypical people, too, but has a higher rate of affecting autistic people.
There is also the concept of interoception, which relates to both sensory activities and emotional regulation. Interoception is the ability to read our stress levels, energy, hunger, emotional state, and much more. By not having a great connection with our interoception, this can lead to emotional outbursts or shutdowns.
I had a lot of shutdowns and dissociation in high school because my body was trying to tell me something was wrong, but I couldn’t figure out what it was. It turned out to be a culmination of a lot of things, but I couldn’t place even one.
It’s like my body and I are completely different beings. When autistic people shut down or have meltdowns, it’s not because we are “throwing a tantrum”. Our needs aren’t being met and our bodies are trying to tell us that–but we have trouble understanding.
Another difficulty with emotional regulation that can cause disability: some autistic people experience selective mutism comorbid with autism. This means that when they get put in stressful situations, they physically cannot speak. It’s not a choice.
Being autistic is something I could never imagine not being. I have no idea what it would feel like or be like to be allistic (not autistic). It’s amazing to me that people can look at someone and know how they’re feeling from the way they look. I can get that smiles mean happiness and frowns mean sadness, but everything in between is hard for me.
When I was younger, it seemed easier for me to interpret other kids’ emotions. As those kids grew older and began to mask their emotions in their own way, I got lost. You never really see an adult cry when they drop their ice cream; it’s usually just a tone shift in their voice or sarcastic joke. I can’t tell if they are really upset a lot of the time. I perceive conversations and people’s mannerisms in a completely different way, but I’m okay with that!
I even perceive time differently, not in a cool way like Quicksilver, but in a more stressful way. Autistic people may have a hard time with time perception, which can include not feeling accomplished after a day or spending too long on a project because of time blindness (feeling that 5 hours is 5 minutes). I also have a hard time trying to imagine how much time it will take for me to finish a task, usually over or under estimating.
I perceive a lot of things differently and it can make things seem more beautiful, such as feeling more at one with nature (my dogs are my best friends). Or, it can make things harder, such as conversations or time management.
Executive functioning is the ability we living beings have that helps us organize, plan, and hold information in our brains. When you’re neurodivergent, this executive functioning tends to be a bit more “dysfunctioning.”
I have a harder time starting projects and following through with them. It also causes me to forget things that I should remember, such as attending a meeting or leaving for school. I get so caught up in other things that my brain can’t remember the big picture. By having poor executive functioning, this can greatly impact every aspect of one’s life, such as work, school, relationships, etc.
We can be seen as lazy or incompetent because of our brain’s annoying behaviors. It’s not that I don’t want to start a project or plan an event, it’s that I cannot do so. My brain won’t let me work and instead is focused on some other thing.
It’s debilitating because I let the work pile up until I have a meltdown or burnout and then I try to do it as fast as possible. I’ve written a whole 12 page essay in one night! People always ask why I do that to myself. I don’t! My brain just can’t figure out how to convince my body to do work sometimes.
Other disabling autism comorbidities
All autistic people are different, so this category could really be anything! There are a lot of comorbidities that can come along with autism–such as OCD, which I experience. Learning disabilities are also more common with autistic people, which create their own set of obstacles that I cannot speak for.
Autistic burnout is definitely a commonality that is disabling among autistic people and it impacts so many categories that I decided to put it here. Autistic burnout is physical and mental exhaustion, stress, and increased stimming, meltdowns/shutdowns, and less ability to mask. It can be caused by many things, such as pushing ourselves too far or having to mask too much. When I am in burnout, I can’t even enjoy my special interests. This can lead to many things such as increased depression, lack of self-confidence, and suicidal thoughts.
It’s not always an unavoidable situation, though. I believe that autistic young people should be taught to pace themselves and set boundaries and that the world should learn more about autism so autistic people can feel confident in themselves without feeling the need to mask.
What if you believe you are experiencing disability due to autism?
If you do believe you are autistic, do your research! I would say the most harmful stereotype for me was that doctors know everything about autism. It took me 21 years to get diagnosed because no one knew what was “wrong with me”.
Read blogs, books, watch videos, etc. from #ActuallyAutistic people. See if their “aha” moment matches up to yours at all.
As mentioned earlier, not every autistic person is the same, but it was through other autistic people’s experiences that I realized: “Wow, I really relate to these people.” Hearing or reading others’ experiences is a way of gathering information for yourself. This helps you to be your own advocate.
I ended up hyper-fixating on autism for a bit and wrote a 13 page paper on why I believed I was autistic. As my therapist said, “That paper length should’ve been enough for the diagnosis.”
Being autistic means being disabled in some ways. There’s no way around that. Even if someone has proficiency in certain parts of the wheel, it doesn’t mean their life is suddenly easy or perfect. We have to process our disabilities along with our strengths–they can coexist.
As for our allistic allies? We can never venture into someone else’s mind, so we shouldn’t judge their ability to do certain things on the outside. Autistic people learn from a young age that being autistic is bad and that being disabled is bad, othered, shameful even.
So, it’s up to the world to show autistic people that they are amazing, regardless of their disabilities. Treat autistic people with kindness; we’re people, too, even if our ways of communicating are different.