When I realized this last year that I’m autistic, it completely shifted my perspective on my life thus far. Next month, I’m going to share the new-and-improved version of my disability story. There’s so much misinformation about autism, though, that I first wanted to discuss the basics of this complex and diverse neurodevelopmental condition.
People with autism spectrum disorder are born with fundamental differences in our nervous systems that mean we think, feel, and behave differently. We spend our lives struggling in a world full of stigma and mistreatment. Though the vast majority of us, including most nonspeaking autistic people, consider this condition to be a key part of who we are and not something negative that needs a cure, many societies are hostile to people who are different. Even relatively accepting societies are not built in a way that supports autistic people. Social support is necessary for everyone to survive and thrive, but non-autistic people often don’t realize how much they are being enabled while autistic people are being disabled.
The way an autistic person is treated varies depending on the obviousness of our differences. We are often categorized as either “high-functioning” or “low-functioning,” but this is inaccurate. Functioning differently is not the same as functioning badly, and autism affects so many areas of functioning that it makes no sense to categorize any one person as “low-functioning” across the board. Additionally, an individual’s functioning changes throughout their life as they face different circumstances. It makes more sense to think of autism as a color wheel than as a line, and each one of us is a combination all our own. Ultimately, calling us “high-functioning” is an excuse not to offer support, while “low-functioning” is an excuse not to treat us with respect.
Science has only recently started to understand how diverse a spectrum autism is, though, partly because researchers have a habit of focusing on the external signs displayed by white boys and not on the internal autism experience or on the cultural and social realities that cause other autistic people to behave differently. What started as two conditions–autism and Asperger’s syndrome–has now been combined into something far more complicated. As autistic people are enabled to interact with each other and share knowledge, our understanding of this condition continues to grow.
The exact signs of autism are difficult to specify. Many of the traditional signs are external actions strongly associated with trauma, which is something autistic people experience constantly. More research is also starting to explore the idea of “autism masking,” where an autistic person alters their behavior to fit in more so they won’t be mistreated by others. Masking is more common among women and people of color, and it has long prevented diagnosis for many of us in these groups. However, the more an autistic person masks, the more likely they are to develop a horrifically extreme form of burnout where their mental and physical health collapses. Our nervous systems are fundamentally different. We can only pretend otherwise for so long. Because of autistic burnout and societal stigma, most autistic people consider suicide multiple times in our lives. We also often have co-occuring disabilities that complicate diagnosis still further, including intellectual disabilities.
Despite how complex this is, there are various working models that express what links everyone on the autism spectrum. As I’ve learned more, I’ve developed a theory of my own. I believe 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. The exact differences each individual has in these areas also varies, and they overlap in many ways.
First, because humans have a bunch of different sensory systems that define how we experience the world around us, even a single autistic person reacts 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 we have to if we’re going to mask our autism. 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. 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 autistic people are truer to our values and morals than non-autistic people are, which makes me worried for all y’all. Are you okay? Do you need help being more moral? 🤔)
I would like to conclude by noting again that autistic people do not want cures for these aspects of ourselves–to cure our autism would be to erase us as individuals. Neurodiversity, like all forms of diversity, adds beauty and value to humanity. We as a species are stronger together because of our differences. Unfortunately, because our societies are not already built to fit the ways autistic people thrive, we need extra accommodation to thrive. Yet 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 suppress autism. In other words, it increases masking, leading to more burnout, health issues, and suicide. That’s why autism rights is a notable movement at the moment. We deserve better than this. I deserve better than what has happened to me.
So! If you read all of this, I congratulate you on having probably learned more about autism. As always, I encourage you to be radically kind and to remember that every person has their own right path in life worth supporting. The best way to offer that support is to honor the authority that marginalized people hold when speaking about their own experiences. Per the famous disability rights slogan: “Nothing about us without us.”
Images via MissLunaRose12 on Wikipedia and hertzen on Flickr.