Autism
Trauma, including physical, sexual, and emotional abuse, is discussed below, uncensored and in detail.
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I was diagnosed with autism spectrum disorder on 10 June 2024, at the age of 24.
Nothing changed in me, inherently, before and after that date. I have always been autistic and I always will be. It's a set of thought patterns and behaviours that come from how my brain is structured.
I am also still myself - the myriad ways that I am my own person are still present from before I knew what autism was.
If I could choose not to be autistic, perhaps that is what I would choose. But if that were to happen, I would stop being myself. I don't believe that autism is separable from who I am as a person, so I use identity-first language: "I am an autistic person". Some autistic people prefer person-first language: "I am a person with autism". And some people don't care how they are referred to.
What is autism to me?
Autism is an individual's experience of life that has aspects in common with other autistic people, often called the "spectrum". Because autism is different for every autistic person, the way I experience autism is unique to me. For some autistic people, the definitions I provide below won't apply to them. I'll do my best to mention differing opinions and ways of being that I have heard.
There are many ways of talking about autism. I will discuss three of those ways here. Autism can be described as:
1) A difference. Autism can be described as a different way of existing, no better or worse than being non-autistic, which is also called "allistic". To be autistic is to have a certain way of communicating with other people and perceiving the world.
Autistic people can be very straightforward with what we mean. When someone asks an autistic person for help, we can provide a practical solution instead of emotional support. Autistic people can prefer strict schedules. We can prefer that the lights be turned down, or the music be turned off.
None of these aspects of autistic people are any better or worse than those of allistic people. Neither autistic nor allistic people are superior.
Autism can be seen as a "mere difference", or a difference that doesn't matter at all - autistic and allistic people are perfectly equal. I don't believe that autistic and allistic people should be considered perfectly equal in terms of ability, since being autistic for me is inherently more difficult than being allistic would be, regardless of how human societies work.
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2) A disability. Autism can be described as a condition that makes life harder. Autism can be described as an inequality. In this sense, it can be a bad thing to be autistic, merely because autism makes it difficult for us to be a part of human societies. Describing autism as a difference, and thinking of autism as a disability in this way, are part of the social model of autism.
Being autistic can make allistic people dislike us, whether they know if we are autistic. They can think we are rude, inconsiderate, or weird. They may not be aware of a specific reason for these beliefs. They may just feel that we have a "bad vibe". They may even think we are dangerous to be around. When allistic people act on these beliefs, it is discrimination. Discrimination can be obvious, like harming us; or non-obvious, like refusing to speak with us. The discrimination that autistic people experience can depend on the cultures we live in. It can also depend on the disability laws of the country we live in.
A way of helping people with any disability is to accomodate us. Accomodating autistic people can involve providing sensory-friendly areas. It can be providing clear, written instructions to prevent miscommunications. It can involve being kind, patient, and understanding when autistic people need extra help to do the things that allistic people naturally figure out. It can involve speaking to us and to our trusted caretakers to discover what we need.
An important accomodation is financial help. Autistic people sometimes can't work the hours that allistic people can work. Autistic people may be relegated to lower-paying jobs, because our abilities aren't valued as highly. Autistic people may be more likely to lose our jobs due to social misunderstandings or a lack of accomodations. Some autistic people cannot work at all. Autistic people may have to pay for accomodations like our own living spaces, temperature controlling, sensory tools like headphones, and deliveries in situations that allistic people don't. Having supplementary money can help autistic people be independent and feel secure.
Autistic people are sometimes able to accommodate allistic people, too. This is called masking, and it involves suppressing autistic traits in the presence of allistic people. This can be controlling the impulse to move our hands when we're excited, because allistic people think that's weird. This can be speaking with more energy so that allistic people won't ask why we seem sad or angry. This can be ignoring when we are upset when the music is loud, because the allistic people want the music loud.
Autistic people may be told, "you don't look autistic". That is because we can mask so heavily in public that we are indistinguishable from allistic people. But we are still autistic, and masking is taking all of our energy to maintain. Masking is a performance. Sometimes, masking makes autistic people feel exhausted and guilty. Sometimes, masking too much causes breakdowns. Breakdowns can happen in private or in public. There are two main types: shutdowns, where we retreat from stimuli, and meltdowns, where we experience intense impulses and emotions in reaction to becoming overwhelmed.
Meltdowns can look angry or violent. When they happen in public, people (including law enforcement) can mistreat us, call us slurs, restrain us, or murder us.
Not every autistic person is able to mask. Some autistic people aren't able to hide their autistic traits. They aren't able to accommodate for allistic people at all. For them, it is especially important that they have the support they need to live a fulfilling life. Some autistic people lack the ability for self-advocacy. They rely heavily on attentive caretakers, medical professionals, and other advocates to speak for them.
Despite this, some autistic people don't consider their autism to be a disability. They feel that, in their lives, autism helps them by giving them gifts more than it hurts them by making it difficult to exist and function. They believe that they have adequate support for living their lives, or that they don't need any extra support at all. For me, autism is a disability. I believe that it is harmful to deny that most autistic people are struggling in ways that are not fair. But I still believe that it is worth mentioning how autism works out for some people.
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3) A deficit. The way that most medical professionals talk about autism is as a set of ways that autistic people lack traits and abilities, compared to allistic people. The collective word for this is a developmental disorder. They say that autistic people have impaired social communication. They say our reactions to sensory stimuli are inappropriate. They grade the "severity" of autism by how different we are from allistic people. (Low- and high-functioning; profound, severe, and mild; high-, medium-, and low-support needs; and levels 3, 2, and 1 are all ways of comparing autistic people to each other and to allistic people, as well as describing the support that medical professionals think we need. These labels all refer to different aspects of autistic ways of life, and many autistic people have mixed labels, or we are best described with flexible labels that change with our age and mental health.)
Some autistic people, especially those who are called low-functioning, profoundly autistic, high- and medium-support needs, and levels 3 and 2 find these labels useful and necessary. They find that describing autism with more seriousness helps them get better accomodations.
My objection to using these labels for all autistic people is that they separate autistic people into groups that exclude each other instead of work together. They also imply that autistic people labelled high-functioning, mildly autistic, level 1, or low-support needs have easier lives, fewer struggles, or a lesser need for accomodations. None of these are necessarily true. However, I don't share the belief that some autistic people have, that we should reject severity labels altogether. I still find labels useful to a limited extent, and some autistic people and their caregivers find them necessary.
I believe that all of us on the spectrum need accomodations of different types. And regardless of our other labels, the autistic label is most important because it unifies us all. However, autistic people labelled lower-functioning do often have clearly different ways of life from higher-functioning autistics. They are often excluded from public discussions about autism, so I wanted to include them as much as I am able. I will use severity labels minimally in my writings, but I will include them when I believe they are relevant, or when someone who is diagnosed with or who identifies with the more severe labels suggests they may be helpful.
Medical professionals may say that autistic people must be diagnosed as children in order to be autistic. (Autistic traits must be present in childhood for an autism diagnosis, but these traits are not always noticed by the caretakers of autistic children, and many autistic people are diagnosed as adults.) They're looking for treatments, cures, prenatal screening, and preventative measures for autism. This is all part of the medical model of autism.
This idea that autism is only a set of deficiencies is also present in non-professionals, who can believe that autistic people are worse than allistic people, and that we don't deserve help and understanding. Parents are sometimes afraid of having autistic children. Some people don't even think that autistic people deserve to live.
Professionals may recommend we be institutionalized in hospitals or put in group homes. In these places, autistic people often have no say over how we are treated. We cannot make our own decisions, and we have little autonomy over what we are allowed to do. For some autistic people, for their own safety, this is necessary. But for many other autistic people, this is a violation of our autonomy and human rights. Our caretakers in these places may be hard-working and understanding, or they may be condescending and abusive.
Professionals may refer us to therapies for controlling and stopping our behaviours. When autism therapies are done correctly, with regard to the external (environmental) and internal problems that cause harmful behaviours, they are a good tool to help autistic people. But these therapies sometimes do not attempt to understand what the causes of these behaviours are, and what autistic people want. They can see us only as sets of behaviours, and not as thinking, feeling people. Some therapies involve restraint, shouting, electric shocks, and other verbal and physical abuse.
It is difficult to find positive aspects of some autistic traits. Being autistic can make it difficult for us to identify, understand, and process our feelings. This is called alexithymia (when it involves emotions, like happiness or anger), poor interoception (when it involves our bodily sensations, like hunger and fatigue), or poor proprioception (when it involves knowing where our body is in space). Autistic people may be overwhelmed by specific sensations, like unpleasant textures; and we also may be unaware that those textures are causing us distress. While being disabled is not inherently bad, having alexithymia, poor interoception, and poor proprioception may be seen as bad. "Disordered" or "deficient" may be the best ways to describe these particular problems we face.
In other ways, autistic preferences can be dangerous - for example, an autistic person may insist on only eating bread, because other foods cause us sensory issues. The preference to eat only bread for weeks can cause malnutrition. Therefore, it is the duty of the autistic person and their caretaker to make sure we eat nutritious foods. Autistic preferences should be understood and respected, but that does not mean autistic people should always do what we want to do.
There is no known cure for autism. There is no medication that makes autism go away. (There are some medications that help with autistic traits like irritability and executive dysfunction. But they do not make us allistic. They do not give us the ability to be who we are not.) There is no therapy that "fixes" us. Autistic people are always autistic. The "cure" for autism is understanding and acceptance from allistic people.
The medical model of autism is a helpful way of understanding autism, though it does not explain autism adequately by itself. It must be combined with the social model. I do not believe that being autistic makes me inherently deficient, even if it comes with some deficits. I don't think that autism should be thought of as something wrong. I think that autistic behaviour makes sense to autistic people, even if it doesn't make sense to allistic people. I believe that we are just as worthy of living, having autonomy, and enjoying life as anyone else.
There is nothing inherently wrong with autistic people using the words disorder, disability, and deficit to describe our own autistic experiences and to describe certain traits. Some autistic people prefer them, and some do not; and those preferences should be respected. But these words should not be used to detract from the worth of someone's life.
It is important to recognize opposing viewpoints. But when the issue is as important as autistic people's right to life, I think it is important to emphasize the inherent value of autistic people - we're valuable for who we are, not what we do for other people.
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Other aspects of autism
All of these ways of conceptualizing autism focus on what autism is, compared to a standard of "normalcy". Normalcy doesn't truly exist, and contrasting autistic people with allistic people without recognizing them both as categories of valid individual experiences can make autistic people feel inferior. Instead, a great way of discussing the autistic ways of being is to just talk about that - autism, not autism versus allism.
For me, autism is usually an inconvenience. My sensory issues make it difficult for me to complete basic chores, especially those outside my living area. As an example, the average grocery shopping trip can deplete my energy very quickly. When I walk into a grocery store, I am assaulted by bright lights, music, the smells of foods, brightly-coloured packaging, cold air from the freezer aisle, and the noise and movement of other shoppers.
I don't have the ability to ignore these sensory inputs, or to manage being bothered by them. I experience all of these, all at once, and sometimes it feels like physical pain. This is so distracting that I have trouble remembering what I came to the store for. Sometimes, I stand still, close my eyes, and cover my ears with my hands. I sway back and forth to regulate my emotions so I don't break down crying in public. On especially bad days, I shout and hit myself.
When I come home from grocery shopping, I go straight to bed, and I lie face-down for hours until I don't feel overstimulated anymore. Most days, I don't want to go grocery shopping, because I know it is harmful to me. But I don't have anyone else to do it for me, and I can't afford the delivery fees to send the food directly to my door. So, I force myself to go grocery shopping.
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Sometimes, autism is funny. The social miscommunications that happen can feel like they're from a comedy show. Once, when I was about 17 years old, my mom was driving me somewhere. She had to drive my dad's car, because her car was at the mechanic's shop. My dad's car is much larger than my mom's car, and she wasn't used to driving it. When she reversed the car out of the garage, she hit one of the side mirrors against the house, and the mirror broke. She exclaimed, "Your father is going to kill me!"
I thought about that in silence for a few seconds, and in a quiet voice, I said, "Mom, if you really think Dad is going to kill you, this is not a healthy relationship. I can look up the domestic violence hotline for you."
One of the social communication struggles I have is with non-literal language. Here, my mom was using a figure of speech called hyperbole, which is ridiculously exaggerated speech. My mom meant to convey that my dad would be upset with her for breaking the mirror, not that he would actually kill her. But because I tend to interpret speech very literally, I was ready to give my mother directions to a women's shelter.
My mom was quick to explain the miscommunication, and we laughed it off. This happens fairly frequently, and I hope my autistic interpretations of figurative speech can be humorous for other people, too.
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Occasionally, autism is dangerous. Sometimes, I have trouble reading maps and written instructions when they aren't very clear. I forget directions frequently, and I have trouble remembering how I got to a place so I can get home. I can become very lost, a long way from home, and too overwhelmed to think about where to go.
Another way in which autism is dangerous is that I can have trouble recognizing dangerous scenarios. I tend to trust people's intentions, because I cannot read people's voices or body language to tell when they are lying. I also do not think of other people deceiving me, because I usually don't deceive other people.
When I was thirteen years old, I met someone online who claimed to be a seventeen-year-old, and he said he was in love with me. He talked about sexual acts with me that I did not understand. He sent me pictures of his naked body, and asked me to send him pictures of mine. He tried to get me to reveal my real name and address. He told me not to tell anyone else about us.
In the beginning, I did not think he was doing anything wrong, because I didn't imagine him lying to me or using me inappropriately. I knew what grooming was, in the literal sense of taking care of one's appearance and the figurative sense of taking sexual advantage of children and other disadvantaged people. But because I am autistic, I don't think about distrusting what people tell me. I didn't think I shouldn't trust the abuser. After all, he told me he loved me.
When other people found out, they said I did the wrong thing by continuing to talk to him. They asked me, how could you do this to yourself? Why didn't you think this was wrong and disgusting? Don't you feel embarrassed or ashamed? I felt like I was damaged, and that I had ruined myself. I felt disgusting and unworthy of healthy relationships.
Ten years later, when I was 24, I felt enough time had passed and I was ready to tell my current partner about what had happened. I was still afraid that he might ask me the same accusatory questions. Instead, he shocked me by asking a different question: "why didn't they realize you were the victim?"
I decided against censoring this traumatic experience because sometimes, shock and disgust are appropriate reactions to horrible things. I know that for other people who experienced similar things, reading about it can make them feel awful all over again. If I were directing this story to them, I would censor it and give them a chance to choose whether they wanted to read it. But for everyone else, I think it is important to confront them with how difficult it is for an autistic person to navigate a world with terrible people in it.
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Autism can also be an asset. Autism is something interesting to talk about, both with other autistic people and with curious allistic people. Autism communities can feel like home, and for some autistic people, they are the only spaces in which we feel appreciated.
Autistic people can also have certain strengths that allistic people may not have. While being autistic as a whole is no better or worse than being allistic, autistic people may be especially inclined toward things like deep understandings of specific topics, organizing, logic, justice, written or performed communication, or artistry.
It is still important, though, to remember that that doesn't make autistic people better or worth more than allistic people. I have discussed my problems with the myth that "autism is a superpower" here.
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Autism action
What should be done about autism? I have three goals in mind.
1) The first of these goals is awareness. People - from those whose lives are unaffected by autism, to professionals who should really know better - are unaware of what autism is and what autism can look like. I want people to be aware of what autism is, why it is worth learning about, and how different it can look in people of different genders, sexual orientations, cultures, and accompanying disabilities.
2) The second goal is acceptance. It is not enough to simply spread awareness of autism. Allistic people should be encouraged to accept autistic people as a part of the world, and a good and interesting part that doesn't need to be fixed or cured. Autistic people whose desires do not hurt themselves or other people should be accomodated.
3) The third goal is advocacy. People who are aware of, and who accept, autistic people can help us feel less isolated. But the institutions that govern us need to change in order for autism to truly be a mere difference, and not a disability.
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I have learned about autism with the help of many supportive people in my life, autistic and allistic. To keep my support communities private, I won't name everyone here. But I wanted to recognize how influential they have been in helping me develop my sense of self.
If you want to learn more about autism, good! My opinions are not the only opinions about autism. Learn about autism first from autistic people - especially from normally underrepresented groups like people who weren't born male, people of different ethnicities and cultures, people with fewer economic resources, and people with higher-support needs and other disabilities. You can ask allistic parents, caretakers, and advocates of autistic people, as well as medical professionals, too. But I believe it is best to hear about autism from the people who live these ways of life.
AWARENESS, ACCEPTANCE, ADVOCACY
AUTISTIC RIGHTS ARE HUMAN RIGHTS
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Do not use content without my consent. Support new and local artists! Last updated 20 June 2024
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