As previously promised, today, I’m going to talk about autism! Those of you who have been with me on this journey for a while–which I’m guessing is most of you–know about my varied experiences with mental and chronic illness. But the realization that I have this neurodivergence has shifted my perspective on those stories and unified them under a much bigger story: one of autism denial and multiplying disabilities. I’ll be sharing that in next month’s post, but before I do that, I think it’d be a good idea to establish some basic background about autism.
Autism is a complex neurodevelopmental condition with a lot of stigma and a lot of misinformation surrounding it. An important thing for everyone to know right out is that most autistic people, including nonspeaking autistic people, do not want cures and do not see our autism as an inherently negative thing. Autism is such an essential part of our selves that to cure it would be to erase us as individuals. Management of specific harmful symptoms is appropriate. Full-on “cures” are not. People struggle to understand that sometimes, but the stigma around autism is much like the stigma around most marginalized identities. Society tends to categorize anything different as bad. People need to realize that’s not true. Our human diversity, in fact, strengthens us as a community because it gives us access to multiple perspectives and knowledges that we wouldn’t have otherwise.
Different isn’t bad. It’s just different.
There are also two notable stereotypes about the autism spectrum based in the original dual diagnoses of “autism” and “Asperger’s syndrome.” The first is imagined as someone who does not speak, stims heavily, and requires support for basic activities like dressing and eating. They generally have a cooccurring intellectual disability, which is not actually a part of autism, but is one of the many disabilities seen more often in autistic people. The second is imagined as someone who does speak but is socially awkward, is skilled at science/math, and hyperfocuses on tasks they find interesting. However, autism is now recognized to be far more diverse and complicated than those two conditions, for which reason it is now a combined diagnosis of “autism spectrum disorder.”
Unfortunately, people still tend to think of autistic people as being “high-functioning” or “low-functioning.” Functioning differently is not necessarily “low” or “high”, someone may function well in one area but badly in another, and a person’s functioning varies based on their circumstances. These categorizations are thus not useful. Considering an individual autistic person’s support needs, including those related to cooccurring disabilities, is more helpful.
All these beliefs are complicated by the issue of autism masking. Autism is chronically underdiagnosed in women and people of color, and part of the reason is that marginalized people feel more pressure to conform to society by hiding (“masking”) their autism symptoms. I believe this is one of the reasons my autism has gone largely unnoticed. However, while masking is to some degree a social necessity, it also is very bad for autistic people. Autistic people have a high rate of suicide, and the more someone masks, the more likely they are to become suicidal. As the Internet has allowed autistic people to connect and discuss their experiences, the issue of autistic burnout has also come into the light.
Autistic burnout is believed to be the result of both autism masking and increased stress, and it goes far past your typical case of burnout. Autistic burnout involves mental and physical symptoms associated with various chronic illnesses, amidst which autistic people lose their ability to mask. Our systems become so overwhelmed that we start falling apart–and as autistic people can tell you, once we hit that burnout, we never fully recover. Yet autistic people’s actual experiences and perspectives have long been ignored in favor of outside opinions that pathologize and try to “fix” us, which has had serious detrimental effects. The only currently recognized therapy for autistic people is applied behavioral analysis, which not only is based in the same dehumanizing roots as gay conversion therapy, but also is designed to increase masking.
When I look back at my life, knowing now that I am autistic, I can see how masking and autistic burnout have become a trap that I’ve spiraled deeper and deeper into as the years have passed, causing me to develop all my other mental and chronic illnesses. That is the narrative of my life so far. I believe the moment I self-diagnosed last summer was a turning point. I don’t expect to be “cured” of my other disabilities–that damage is done–but I am determined (and a bit desperate) not to hit burnout again. Unfortunately, autistic burnout is such a cutting-edge concept right now that there’s not a lot of information yet on how to avoid it.
So what exactly are the integral differences that autistic people often try so hard to mask? Well, that’s not entirely clear. The current scientific understanding of autism is a limited one that prioritizes certain outwardly-expressed signs that are, in fact, strongly associated with trauma. Autistic people experience so much trauma in our lives, including burnout itself, that we really don’t know what we’d look like without it. There are various working models, however, to better express what links people on the spectrum who present very differently. As I’ve learned more about the condition, I’ve developed a model of my own, which I’d like to describe here.
In my mind, autism is characterized by differences in seven areas: sensory processing, communication, pattern recognition, emotional processing, empathy, focus, and directness/genuineness. What counts as “different” does depend strongly on the society in which a person lives, which is important to consider. The exact differences each individual has in these areas also varies hugely, and with the complications caused by the many overlaps between these areas, a diverse spectrum is created that we’re only just starting to understand. It looks something like this:
First, because humans have a bunch of different sensory systems that define how we experience he world around us, even a single autistic person will react to different stimuli in different ways. Sometimes we’re hypersensitive, and sometimes we’re hyposensitive. Most autistic people are easily overwhelmed by at least one kind of sensory input: loud noises, bright lights, clothing textures. Autistic people regulate our sensory systems through repetitive behaviors called “stimming.” Everyone stims sometimes, but autistic people need to do it more than usual because our nervous systems are more prone to becoming unbalanced. For this reason, autistic people are also more likely to have issues like chronic pain and seizures.
Second, communication differences can present as someone being exceptional with language, being nonspeaking, or having a more complex mix of traits. Many autistic people are nonspeaking when under stress but can speak at other times. Some autistic people communicate best through echoing what they’ve heard others say, or they thrive using sign language, writing, or other forms of alternative communication. Speaking autistic people often rehearse what we’re going to say beforehand, partly because effective autism masking requires that planning. Our body language and vocal tone also tend to differ from the norm: some autistic people have more of a flat affect, while others are extremely expressive.
Third, autistic people tend to excel at pattern recognition, but struggle when a pattern is disrupted. There are patterns in most things in life, so whatever someone’s individual interest areas may be, they can find a way to make use of this skill. Autistic people are often good at making predictions because of this, but we don’t always consciously know where the connections are coming from, which means this skill can be is a bit eerie and “prophetic” at times. We also may think or speak in complex, jumpy ways because of the connections we’re making that other people don’t see. When something falls out of pattern, we often find it very confusing and upsetting, hence the idea of autistic people being “inflexible.”
Fourth, autistic people often struggle with managing our emotions. Sometimes, it’s because an autistic person has a hard time even recognizing their own emotions, which is related to sensory issues that make things feel different internally. Many other autistic people are just overwhelmed by how unusually powerful our emotions are. This is further complicated by trauma, which often causes an increase in emotional sensitivity. It’s important to reiterate, however, that communication differences may mean autistic people do not express their emotions the way people expect.
Fifth, autistic people have empathetic differences, partly as a result of the four previous factors. It’s often assumed that autistic people have low empathy, but many of us are actually hyperempathetic. Again, this adds to the excess sensitivity and frequent overwhelm that autistic people experience. It can also make it difficult for autistic people to stand up for ourselves because we empathize so strongly even with people who are harming us. Autistic people may avoid eye contact because the resulting empathetic response is like getting punched in the face with ~feelings~. This is so strong that autistic people who are hyperempathetic sometimes believe ourselves to be “psychic” when we’re younger.
Sixth, a trait that autism shares with its “sister condition” of ADHD is differences in focus. Autistic people tend to have hyperfixations and episodes of hyperfocus. Hyperfixations are intense, long-term interests in something that the person constantly wants to talk or think about. Hyperfocus presents as a shorter episode where a person becomes so focused on one particular task that they forget to do other important tasks, including eating and showering. Being broken from a hyperfocus state is very jarring. Autistic people also tend to be impatient with subjects or tasks that don’t interest us and have trouble focusing on them, hence us being absent-minded people.
Seventh and finally, autistic people tend to be more direct and genuine than non-autistic people. It is important to remember here that many autistic people learn, both consciously and subconsciously, to contort ourselves to fit non-autistic communication patterns so others will like and respect us. However, our natural selves have a directness and genuineness that, depending on the individual, may cause difficulties understanding and engaging in secrets, lies, small talk, figurative language, sarcasm, and other subtext. Autistic genuineness also means we’re more likely to talk at length about things we find interesting and to live our beliefs more consistently. (Multiple studies indicate a greater consistency in morals and values when it comes to autistic versus non-autistic people, which makes me worried for all y’all non-autistics. Are you okay? 🤔)
So! If you read all of this, I congratulate you on having probably learned more about autism. I will be back in March to share my own dramatic autistic tale of woe. Until then, as always, I encourage you to see past stereotypes and stigmas and to remember that every person has their own path in life that’s right for them. Be radical with your kindness!