Neurodiversity: Why autism isn't real (the way you think it is)
Table of Contents
Prelude
Trigger Warnings/Content Warnings
In “Neurodiversity & Autism”
- Neuronormative language and ideas (as a storytelling device and to show issues with it + connecting w/ general societal understanding)
- Social/internal mental trauma (Personal experiences. Does not include any other types of trauma)
- Ableism (ideas)
In Other topics
- Everything above
- Physical violence (without significant injury or detail, to environment not people)
- Meltdowns (no instances of harmful or incorrect handling of them)
I use a lot of second person language in addressing sources of ableism, so just a warning if that will be taken personally (I almost wrote the sentence in second person!)
I apologize if I failed to warn of all triggering topics written. If you felt something was missing, please let me know and I’ll make sure it’s properly addressed. I may have experienced or I may say things that are triggering to others without recognizing it as upsetting. I’d love to learn about more experiences, so feel free to have a chat with me about anything you’d like me to know.
If you are unsure if something will be triggering, I suggest you read the paragraph following.
Specific uses and reasoning (non-triggering)
This is written with neurotypical people as the primary audience. I will sometimes intentionally use neuronormative language. My goal is to explain to the audience, in terms they are aware of, the ideas behind real acceptance of neurodiversity. I use neuronormative language as part of my storytelling because that is what I knew when I was experiencing it - the intention is not to promote these ideas but to show how they can be harmful.
I also find myself unintentionally using neuronormative language because it’s naturally imposed upon me, and isn’t really able to be eliminated without a change in society as a whole. I discuss largely unintentional and societal ableist ways of thinking.
Actual Prelude
This is really just a dump of my thoughts in the past few weeks about what it means to be autistic and why things are the way they are. I’m new to these ideas, in the way that I only thought about them recently. My thoughts might not be right, they might not be true, but I think everyone has something to learn from everyone’s experience, and I wanted to share mine. Take what you can from this, and learn the experiences of others. A lot of my ideas on what it means to be normal are… very far from what a lot of people think, but I tried to explain to the best of my ability. I use a lot of words that I’ve heard in the way I interpret them, which might be different from your interpretation. Try to understand in the context of this writing.
I don’t have any blame or resentment towards anyone who has helped me or been involved in a system that I discuss or portray negatively. I think anyone who tries to help is not a part of the problem, and I honestly don’t think ableist (intentionally/unintentionally) individuals can be blamed for anything I experienced. So long as society is the way it is now, there will always be something or someone bad. The thing to blame here is the way society as a whole perceives neurodivergence and normalcy, as well as the ideas spread by popular media, organizations, and medical information. There’s a lot to unpack, and it doesn’t need to all change at once- it just needs to be recognized and known. You are not the problem if you honestly do your best to respect and accommodate others and are able to recognize internal sources of ableism and the related pressures from society that caused it. The problem is not you, it’s all of us, including me. The ideas I hold have been formed as a reactionary to the realization that I felt the same way, and that it doesn’t have to be this way.
Read away!
Neurodiversity & Autism
An introduction
I was diagnosed with autism in second grade- a lot of the specifics of how this was discovered and what was going on in my life at the time are a blur of emotions and washed-out memories faded by self-suppression of my identity.
I mean, my diagnosis story isn’t different from most else’s. I had problems in the classroom, my parents were concerned and had me go to therapy to discuss my struggles and find solutions. This led to the tunnel of “wow, this seems a lot like autism”, to a psych evaluation, and the realization that a lot of my “quirks” as a child were because I was autistic (plus the ADHD diagnosis).
Second grade went alright for me. Now being able to recognize and address my struggles was useful, and I had a supportive and caring teacher who did her best to accommodate me and I didn’t stand out much among my peers. I had friends, and while I may have been a little different, I was accepted.
Unfortunately, the world is not so generous all the time. Third grade was possibly the worst year of my life, for so many reasons. I honestly don’t remember the majority of it, and I can only guess at reasons for this, but I’d attribute it to blocking of traumatic memory and self-hatred so great that I felt the need to remove the “problematic” parts of my identity.
What I do know is that a large part of my problems were initiated by a general lack of accommodation from my teacher and the failure of society to properly create understanding and acceptance of neurodiversity.
I don’t remember a lot of specific instances of lack of accommodation, but the good thing is I don’t need more than a few to make my point and really portray my experience. I wouldn’t take everything I state as happening or that I felt as pure fact, because I truly do not recall some of this stuff, but I think I’m close enough that my point can be made. The specifics aren’t important here.
An Example
My teacher was unaccommodating in strange ways at times. I don’t remember this well myself, but my mom told me a problem I had at some point was during math time, she would hand out candy for completing your work. You finished your work, you stood up and went and picked a piece of candy from her drawer. That’s awesome, and a good way to motivate students. However, I HATED not being the first to finish my work. If someone finished before me, I became very upset. I have a few things I could speculate as to my reasoning for this because I don’t really remember why, but I’ve always been a very competitive person and one who is heavily rewarded by feeling the “best” or winning (which I also think is related to my ADHD, I get little reward from doing work itself, but I love correctness, validation, winning, etc because they are stimulating). I hated feeling lesser or slower than others academically even though I likely wasn’t far behind whoever was faster than me. How could I value myself if I already was bad socially, bad mentally, and now I was bad academically?
Either way, what’s important is that I could not handle the environment, and the environment couldn’t accommodate me. My mom said that she refused alternatives like giving me the candy before math time, not giving it out, giving it at the same time to everyone, etc. I think I was most bothered by the image of others taking the candy that I wanted, being aware of it was deeply stressful and put a lot of pressure on me.
So… Why?
This is a problem, obviously, with the teacher and not the system, and a problem with my own self-image and how I appear to my peers. The point I want to take from this though is that I was no less capable of doing my work than any of my peers, I was no less capable of knowing that I felt a way others didn’t, I was no less capable of understanding that someone faster than me was not better than me, and I was no less capable of understanding that the candy I wanted would still be there. I knew that. However, being an eight-year-old who has just begun to experience unaccommodating environments and social separation, combined with a lack of emotional regulation typical to all children, and judgment of my emotions from my peers... is it so absurd to see how I was upset?
My feelings could be perceived as jealousy or anxiety, so why can’t I just… not? Everyone else deals with it. Why didn’t others in my class feel this way, why didn’t they act out? Why am I, the autistic kid, the only one struggling with such a simple situation? Well, I’m autistic! I don’t process everything exactly the way the other kids in my class do. There’s nothing inherently lesser about me in this situation. I was just an autistic kid who was having a hard time thinking/acting “neurotypically”, with a neurotypical teacher who thinks of things in neurotypical ways. My experience is not describable in neurotypical terms. Was I jealous, was I afraid, was I sad, was I stressed? I don’t fully know.
Understanding and Awareness?
I think it can be common for neurotypical people to assume (either by lack of awareness or by evaluating autistic experience in a neurotypical fashion) that this type of behavior is selfish, that I want the candy first because I want to feel special, that I am deserving of more than everyone else. This perception is furthered by seeing peers getting accommodations (stress balls, tactile devices, leaving the class, etc) and also desiring these things. Our society tries to accommodate autistic people (this isn’t a problem! Let me elaborate) and yet by doing so can foster ableist thinking, rooted in… a lot of places.
The thing that makes this so hard is that as a neurotypical you cannot relate, your only experience is from your perspective. They don’t understand why autistic people get these things because they are not autistic themselves. It’s natural for humans to draw conclusions based on experience. We do this all of the time, and it’s generally helpful. But as we all know, this tendency rears its ugly head when it comes to stereotypes. The unique problem with stereotypes of neurodivergent people is that the very foundation they come from is wrong. The stereotypes are not just inaccurate to most people and unrepresentative, as of a typical stereotype, but fundamentally incorrect. If you saw that most coffee cups had curved handles, and you stereotype coffee cups as having curved handles, it is true that some have curved handles! An autistic individual, within the coffee cup analogy, is not a coffee cup, and yet they’re stereotyped the same on the basis of having a handle or not. That doesn’t make sense! The criteria and ideas you have about the human experience just don’t apply to autistic people the same way they do to neurotypical people. Let me use a real example: Some autistic people don’t understand social cues and some neurotypicals don’t understand social cues… some coffee cups have round handles. But as an autistic person, I have a round handle, but I’m not a coffee cup! So why are you comparing me to coffee cups? Because you are a coffee cup, and you only know about coffee cups, and I seem close enough to a coffee cup.
This is the basis behind autism awareness. The more people that are aware, the more people can stop making these types of comparisons, and the more people can know how to interact with autistic people. You’ve read up now, you know that non-coffee-cups shouldn’t be compared in terms of coffee cups. You know some of the typical behaviors and signs that something is not a coffee cup. Now what? You’ve read that some autistic people can’t do something you assume everyone can and that some autistic people do things you wouldn’t expect. You are aware that people can be autistic. You try to be friendly, and you try to accommodate autistic people wherever you interact with them. The problem is, the classification of autism as a disability, disease, thing to be diagnosed, thing to be fixed, or thing that causes problems will always mean that autistic people are perceived as less able. Well… wait a second. A few paragraphs ago, I said the following: “I was no less capable of doing my work than any of my peers, I was no less capable of knowing that I felt a way others didn’t, I was no less capable of understanding that someone faster than me was not better than me, and I was no less capable of understanding that the candy I wanted would still be there.”
So… what? You want to be accommodated, but you want to be treated like everyone else? You want to be considered equally able when you’re incapable of holding a job, when you can’t so much as read the fact that someone is angry with you?
How does that work? Clearly, autism is a disability.
This is the same approach the special education system, and, in fact, most people use!
The goal is to help the autistic person in this approach, and it’s usually done with good intentions, but I write this to say… it sucks!
I had an IEP, I had all of the resources the school special education system had to offer, and yet I struggled. Autistics everywhere struggle. Clearly, what we have to offer is not enough. Why can’t autistic people succeed in our society? What can I do?
Corporations, people, and society come to the conclusion that accommodating or changing to fit the needs of autistic people is an inconvenience and makes autistic people a liability wherever they go- that means that autism is perceived to be a disability.
Well, yeah… as someone with autism, I am less able. That’s true.
The Point
But… it doesn’t have to be this way! By assuming that because someone is autistic they are less able, you are making them less able. It’s kind of weird the way this works, but basically, you can’t - and shouldn’t - compare my abilities to other autistic people, you should compare relative to humanity as a whole. Not only because it lets you listen, or because autistic people haven’t been given the same connection to humanity is as any other human, but because the very idea of autism… is wrong!
I’ve used the words neurodivergent and neurotypical a few times, and I’ve used neuronormative in my prelude. What is that?
Neuronormativity is the idea that there is a normal human experience. That there is a set of normal behaviors, a set of normal traits, and a set of normal ways to do things, except this idea is applied to you. It’s applied to who you are, your processing of the world, your perception, the internals of your brain’s functions. Someone who is neurodivergent doesn’t follow this neurotypical mold. They have a set of “disabilities” or “disorders”, that change the way they are.
I mean… this makes a lot of sense, right? Most people act a certain way, so we assume they are normal, and the people that don’t aren’t! It’s as simple as that. Humans love thinking in terms of averages, binaries, and categories. We make statistics to help us understand trends about everything happening around us, we stereotype because it satisfies the average-seeking part of our nature.
Here’s the thing. There is no neurotypical. It doesn’t exist. Neurotypicality, as a trait, is not something anyone has. Neurotypicality is the average of all human experiences and ways of thinking. It is the mean human. It’s like perceiving someone’s entire knowledge level on whether they went to university or not. I mean, clearly, there is a correlation between university education and knowledge, but… not everyone that didn’t go to university is unknowledgeable! You know this! Sometimes a university degree is not what someone needs to go into their career, sometimes it involves just working and learning on the job, sometimes people don’t end up getting a traditional career and make money doing whatever they want. The point is, not everyone takes the same path in life. We’re different. Somehow, people missed the memo when it comes to your brain. Neurodiversity is not a binary system, and it’s not a spectrum, (especially not a spectrum based on how “able” you perceive someone as). Neurodiversity is just something everyone has. Everyone is neurodiverse, and some deviate from the sum of all neurotypes more than others (statistically, the standard deviation of neurotypes is pretty low, or underrepresented because it’s impossible to know another’s neurotype outside of their interactions with the world, which is why neuronormativity exists as a concept. It’s much more accurate to say the visible standard deviation of neurotypes is low, which is still a neuronormative idea. Humans are not statistics).
Autistic people don’t always line up with the most common observable neurotype, but we are assigned our own observable neurotype. Autistic. That wasn’t necessary. I am me. You are you. We all think in different ways. The way I think is kind of similar to the way you think in some ways, and the way I think is also similar to the way another person you classify as autistic thinks. But I do not think the way you think, and I do not think the way the other person you classify as autistic thinks. As there is no one human experience, there is no one autistic experience. Being autistic is not only an identity trait that people can relate to on different levels but a broad classification of millions of completely different brains that happen to have similar struggles within our society, which can be described as our observable neurotype. In a way… autism doesn’t exist, our shared experiences as neurodivergents who have struggled within our current society does. That’s autism. Not our brain. Our brain is a brain. It does brain things, and it does them quite well. It’s just not the same brain things as everyone else.
It doesn’t make sense to classify people on their observable neurotypes. You can’t see or experience another person’s mind, which means true neurotyping is impossible. So we use observable neurotypes to draw conclusions about people. We notice that some people have difficulty with a specific set of things, and we say these people are autistic, because that’s what we can observe. This is a great way to provide resources and help people understand their struggles, by unifying observable neurotypes and making a community to support their struggles. The problem is, we use these observable neurotypes to draw conclusions about neurotypes, and those conclusions are very, very wrong! The fact that some observable neurotypes have highly effective treatments that work for many people or can be described by neurochemistry doesn’t prove that neuronormativity is real, or that observable neurotypes are neurotypes (an example: stimulants for ADHD is ~80% effective). It means that the specific observable neurotype happens to have a high connection with a real neurotype (but this is only a logical conclusion, there is no way to identify a real neurotype). The fact that you can treat or "cure" some of these things doesn't mean that neurodiversity, as an idea, should be dismissed. Yes, being able to do things that most people can do with no difficulty is great! But we can do better.
The reason the struggles of autistic people seem to be so much worse in our society is, in my belief, because autism is not well correlated to a real neurotype, but is an observed neurotype resulting from a huge variety of neurotypes present in the world. There is no universal way to treat, or to help, or to “cure” autism, because it wasn’t even a thing in the first place. It’s an observation of a group of completely unrelated individuals who suffer similar observable struggles due to the unaccepting and unaccommodating nature of the world we live in.
The only way to allow autistic people to succeed is to accept the fact that autistic people are normal. That sentence doesn’t really make sense in a neuronormative worldview, which is why it’s kind of hard to explain. There is no normal, so everyone is normal. Humanity is normal- and we should accommodate everyone’s needs to the best of our abilities. We all have needs, and we all have things that are different about us. You don’t have to be neuronormatively-defined autistic to experience what it means to be autistic. You hate cleaning, and you have a lot of difficulty cleaning up after yourself? That’s unfortunate, and it’s valid. Maybe someone could help you clean, or you could call over a friend and chat with them while you clean. This is the same approach we need to take to individual differences, including the set of traits we usually identify as autism. Stop generalizing, stop trying to “cure”, stop trying to prevent unwanted behaviors. Take a deep breath. Listen, if that’s an option, think outside your own experience, and work with people to improve things. It was never complicated. The labels we assign and the generalizations we make about people fail to address and treat the real problem with autism: we can’t respect someone as a fellow human if we assign labels based on how useful or productive someone is within society. Sure, there are common traits that a lot of neuronormatively-defined autistic people have- and knowing about them is useful because it means you can understand more… but those traits aren’t autistic traits. They’re human traits, traits that all people have. Some people just have more or less of them. Celebrate neurodiversity. Your friend’s mom doesn’t like touching a specific thing because it feels wrong to her? That doesn’t mean she’s autistic, it means she just doesn’t like that tactile feeling of that thing.
Not even the idea that we classify people as autistic by their traits is true. We classify them by how their traits make their function within our society difficult. The current “low-functioning” to “high-functioning” spectrum that defines Autism Spectrum Disorder is ableist. In order to have your identity as autistic affirmed, you have to be diagnosed, and to be diagnosed, you have to suffer from society's ableism, because otherwise you don't "appear autistic"! You're not suddenly neurotypical because you figured out how to blend in, you're not neurotypical because you can function. You're you. So, if you relate to being autistic, well... why aren't you autistic? "Diagnosing" people as autistic is solely based on its impact on your ability to function in our society, not who you are. You can relate to, and identify with, being autistic without being diagnosed! A diagnosis is not how you should affirm your identity. Your identity is unique, and it's yours.
Autism. Is. A stereotype. It’s a stereotype of a group of people that experience similar struggles in society because that society fundamentally believes in a superior method of processing, and fails to accommodate unique ones. It’s the same problem that every social justice movement has. This is why to be autistic is not a disorder, it’s not a unique special thing you have. It’s certainly not to have significant struggles or to match certain common behaviors. To be autistic, or to be neurodivergent in general is to be a human not matching the current majority observable neurotype. Autism is a collection of neurotypes, forming a larger observable neurotype (which aren’t real), that is “observable” in almost 2% OF ALL HUMANS.
Furthermore, the other 98% isn't just one neurotype, think about how you feel different from others that you perceive as “normal”. One of you doesn’t like pineapple on pizza, and the other does? Apply that to thinking processes, perception, processing… and you’ve got yourself a neurotype. You don’t know how everyone thinks, you only see the actions they take. Autism is not a neurotype, because it’s not one way to process the world - it’s a collection of the experiences of millions of people averaged out and stereotyped into one glorious misrepresentative, ableist, neuronormative label of an observable neurotype. That’s why the struggle of autistic people is so unique, so different from other autistic people. That’s why there isn’t one treatment that works well for every autistic person. It was never the same thing. The treatment to autism is simply to eliminate ableism and focus on individuals, not disorders.
I’m not saying that everyone needs to stop using the word “autistic”, and that people can’t identify with the word “autistic”, or that autism isn’t real in the sense that it’s a thing. A thing that you can observe. It is a thing. But it’s not the thing anyone thinks it is, it’s a trend of human nature. People can identify as autistic because they believe they’ve been limited in society by their individual neurotypes in a way similar to other people that identify as autistic, or they experience similar struggles. People like identity. It’s an important part of you!
Something that really shows that autism isn’t a specific thing is the fact that it’s going up in diagnosis. Where were the autistic people before? Why aren’t they ever mentioned in history? Because they were considered as just having unique neurotypes, and not as a disabled person, and they weren’t assigned a label because they had some specific neurotypes. There is not one solution to the struggles of autistic people, because we are not the same! We are just individuals! “Autistic” people in history were just considered as humans, nothing else. They could gain accommodations through the regular respect between humans, not because we make programs to help and raise awareness about how they’re different. We just started generalizing because it’s what we do! But we’re drawing all the wrong conclusions.
Conclusion
So, we’ve royally screwed things up. We’ve already got all these labels now, and we’ve separated people based on their neurotypes. We’ve got programs, awareness, and treatment for autistic people. None of these things are bad! They should be available to everyone, because everyone needs unique things. Normalize accommodating others, because it’s respectful, not because you want to support the disabled! We’ve twisted ourselves into this weird, fake, dumb classification system because we thought the wrong ideas about a lot of things. We do this with gender, we do this with sexuality, we do it with a lot of things, and social justice as a whole is dedicated to dismantling this gross misrepresentation and problematic structure of human generalization. Stop worrying so much about what people are and what they have, and start listening to who they are instead.
You can’t help autistic people as a whole, you can help an autistic person.
Work with other humans, lift up other humans. We were all slammed onto a rock in space for no reason together, and there are a lot of forces dividing us. We hate each other! Except we don’t hate each other! It’s a lie we tell to ourselves because of our pattern-seeking, statistics-oriented, stereotype-creating, generalizing minds. You don’t hate this person. You hate who you think they are, or what you think they represent. Assess everyone as an individual, not as the groups and movements you think they are. We are all individuals, and if we don’t recognize that we will never be able to appreciate the humanity of everyone. The idea of division comes up a lot in politics, but we fail to recognize it applies to every facet of our perception of others, including our social perceptions and how we view the ability of others.
Ableism, racism, transphobia, homophobia, xenophobia, and similar dividing ideas are all rooted in this pattern-seeking thing that a lot of humans experience. Pattern-seeking is a neurotype! It’s not a negative neurotype, it’s not a positive neurotype, it’s just a trait of humanity that exists in unique ways - it has harmful effects and it has positive effects. We all think and process things differently. There is no neurotypical!
It’s really hard to fight our nature and break the patterns we’ve built up in our minds our entire lives, I understand. Just keep listening to the experiences of as many people as you possibly can if you truly want to help any group of people. Know the truth: we aren’t our nationality, our identity, our sexuality, our gender, our preferences, our neurotypes, our anything, we’re individuals before anything else. The only way to prevent this pattern-seeking that causes the division and struggles in our world is to actively recognize and fight it in ourselves and help others to not only know that it is an issue to be addressed, but to also identify it. There’s not one way to do this, so show this to someone you care about in whatever way you want! We’re individuals, remember! Quit generalizing and think about them as a person.
Love individuality. Accept neurodivergence. Accept that you aren’t neurotypical, because there is no such thing. You’re you. Nobody else is you. If nobody else is you, then nobody else is anyone except themselves, and we need to stop treating people like anything except themselves.
Other topics
There’s a lot I want to write about, and some of it doesn’t fit with my main point, so here it is.
I also think there’s a lot of topics I haven’t written about that I still feel strongly about and think is important to know, but don’t specifically want to write. There are so many more things that are inherently ableist and so many little things that you don’t expect to be harmful, and hearing from more actually autistic voices will help you recognize these sources. Keep reading, if you’re interested. There’s a lot of communities and accounts centered around the ##ActuallyAutistic hashtag on any platform of your choice, and there’s a lot of voices to hear. So, check those out sometime, would you? I wrote this in very general terms to explain how society and even things designed to benefit autistic people perpetuate ableism and neuronormativity, but I can’t write out every instance of ableism I’ve ever felt. I can’t even notice it in myself sometimes. I - as a person - exist the way I currently do because of a level of internalized ableism from societal pressure. It’s… interesting.
Language, choice, respect, and decision exclusion?
“Special”, “Different”, and other phrases used to paint autism with good light, as an advantage, are often used as an attempt to linguistically portray autism less like a disability, and more like an advantage or quirk. This idea makes sense… except now you’ve overshot the entire point. You’ll see, keep reading. This is the same problem with person-first language that’s often taught or encouraged (person first language: “person with autism” vs “autistic person”). If someone is a person before they are autistic, the idea is they are more human. Within the context of English, it also misses some of the point by treating the idea of being autistic as a noun and not an adjective… despite it being an adjective. The noun form “autism”, puts the focus on autism as a subject instead of the person, who is the real subject of the sentence. It also matches the form of diseases… which is not a very positive message (“person with arthritis”). Diseases aren’t usually used as adjectives on people, it’s offensive (“arthritic person”?)… so does this not apply to autism as well? Should I use person-first language, because it’s respectful to the person, like how we do with diseases? Read that again. Autism isn’t a disease, and you shouldn’t treat it the same way.
Also, a lot of times people forget… We’re human! Ask us what we prefer! I have no preference, however polls show the majority of autistic people prefer identity-first language over person-first language. This means… it’s a good default! If you have to choose, and you aren’t referencing or nearby a specific autistic person, this language is preferred by the majority of autistic people. It’s not a problem until you intentionally ignore an autistic person correcting you on your language because you think it’s more “respectful”. You don’t get to decide what’s more respectful! You are not the person being addressed!
I think people can have an aversion to being told they can’t decide, or aren’t within a group so they can’t do something- it’s not about that! Imagine this situation where you have ten nearly identical people. The only difference between them is eight of them prefer pepperoni pizza and two of them prefer cheese pizza. Any other trait about them is irrelevant. You’re ordering one pizza for all of them (you are not eating any of the pizza). What do you get? Probably a pepperoni pizza because it’s generally more acceptable (the real option is a half-cheese, half-pepperoni, or multiple pizzas, but in language that doesn’t really work). It makes the most amount of people happy. If you’re ordering pizza with just one friend, and they prefer cheese pizza, you get them cheese pizza! Most autistic people prefer identity-first! It’s not a “you can’t do this because”, it’s just basic respect for human preferences. Your aversion to this idea doesn’t make any sense. If I say I prefer cheese pizza, and then you tell me that pepperoni pizza is better and that you think I should get that, despite you not planning to eat any of the pizza, and then you proceed to order a pepperoni pizza, you’re just a mean person!
I'd also like to include this article as further reading. I think it well explains both sides of the argument and is a good jumping point for further reading on language. It includes links to more articles, written by authors on all sides of the debate.
https://autisticadvocacy.org/about-asan/identity-first-language/
I would further suggest reading through ASAN's website, in general. It has some amazing writing and resources!
An elaboration on my story/Being “Cured” and perceived as neurotypical, self-image
I struggled through third grade, I had a lot of meltdowns and sometimes my anger led to physical violence, usually directed at my environment. Desks were flipped, tables were banged on, and it really did not paint a good picture of who I was. Why would you want to talk to the kid who gets mad every time you do something they don’t like and hits things? What if they hit you? There isn’t really any good understanding or awareness of what it means to be autistic among children, and among adults it’s about as weak. I personally feel most of my social separation was not because I was unable to notice social cues (I wasn’t to some extent, but I don’t think it was the main factor), but because no one could understand or relate to my struggles. No one had any perspective to base their views on me except their own, and as we know… that doesn’t work.
I was further socially isolated by the fact I was in a “gifted” program at my school, which is nice, except at my elementary school this means almost all of your social interaction takes place within a 30-kid classroom, while other students got a completely new set of classmates every year, the gifted program didn’t change much at all. You were stuck with them until middle school. For this, and concerns about the teacher I would have in fourth grade, I left the program for fourth grade and got a teacher who we thought would be more accommodating. And… it helped. It helped a lot. I had a new set of kids in my class that knew nothing about me, and I had a teacher who was understanding (side note: my third grade experience also involved like 3 different teachers because the original teacher I had left on maternity leave about three months in, which also could not have helped my situation. So much change, pressure, emotions, and social separation was bound to make a bad year).
What’s interesting, and part of why I believe in the ideas that I do is that a big part of my autism problems was emotional control and meltdowns. But now I question, if these reduced a LOT by a simple environment change, and yet other problems don’t change- how much of autism is observations and not neural? My sensory issues were not very different from third to fourth grade, but my meltdowns practically disappeared. If I’d never been in an environment that would trigger a meltdown, or I’d never contacted something that was a sensory issue… am I neurotypical (in those ways)? No! I’m not, clearly. But why is someone not neurodivergent if they dislike the sound of nails on a chalkboard. It’s just a sound! So they are processing the sound... differently. My experience as an autistic person fits very well with the idea that autism is not one thing, but a natural, extremely varied neurodivergence that produces similar problems in our society. If you can make a spectrum on a spectrum of neurotypicality to neurodivergence… Is that spectrum really a thing? Is “Low Functioning” really at all related to “High Functioning”? I don’t implicitly understand the experiences of other autistic people sometimes, because I am not them. I have not lived inside their mind. The idea that neurodivergence is just a random assortment of neurotypes explains too much of my experiences relative to others to dismiss. It might not be true, but it’s sure a hell of a lot better than the way of thinking we have now.
Back on track, I had an alright social experience for fourth and fifth grade. I had friends, I made a few new ones. I had close friends. I was doing well, although I had struggles with sleep starting in fifth grade because I now had to get up at 6 in the morning instead of 8. But… I didn’t feel normal. I felt different. I didn’t fit in. I don’t attribute this to social development issues, or anything about me at all. I could’ve just been “weird”, I mean I was to an extent, but… I had friends! So obviously there’s something else going on. Maybe other people don’t like me because I didn’t cut my hair and I slept in class a lot - except it was fifth grade, we were all awkward preteens, and no one else seemed to have this problem. I think that at this point, the environment impacting my behavior stopped being an issue, meltdowns, social development, etc were not the issue. It was because I was seen as autistic. Nothing else. Just the label, the generalizations uneducated children draw, and the way I was treated differently by adults as part of my accommodations. I would spend a couple hours a day in the special ed classroom and there was always another special ed teacher present or dropping by to check on me and any other autistic kids. I honestly do not think there were any issues with my behavior that couldn’t be addressed in a gen-ed classroom setting, so long as there was an understanding of who I was. I don’t recall many specific instances where I felt that my behavior was too “autistic”, I masked. I masked a lot (masking is suppressing autistic behavior, intentionally or unintentionally. It’s… both good and bad, in a way. It’s good because it helps me understand and relate to neurotypical experiences and helps me fit in socially, but it wouldn’t be necessary if we didn’t reject neurodiversity the way we do). If I was masking, the only thing that was different about me was my hyperfixations and just… neuronormatively acceptable traits. So, I attribute a lot of this to just the fact that people knew I was autistic. I was the weird kid, and if you talk to the weird kid, you’re weird. I think school as a whole is horrible about promoting neurodiversity. Special Ed is seen as the secret room nobody talks about for the loud kids to go when they get upset. The only exposure gen ed kids get is the worst part of it all. There’s no way to understand what’s happening without first understanding the concept of neurodiversity. Social issues related to autism sometimes aren’t an inability to process, but stigma and the ideas of neuronormativity that society creates and reflects in its children. I lost a very close friend of mine in 6th grade, and I think there’s a lot of reasons he could’ve had to stop being my friend, from my clingy tendencies (he was one my only close friends), or that he simply didn’t like me, but there’s also a lot of evidence that he left because he wanted to avoid the stigma of… me. Preteens and teens love the idea of popularity. It dominates social life, and it’s stupid, but it’s a thing. You can’t be “popular” if you only talk to the autistic kid in a neuronormative world. Uhm… Why? That’s just not true. By this model, you shouldn’t be friends with anyone if you want to truly be popular! You don’t benefit from exclusion if you want to be liked by the most people possible. It all comes down to ableism that our society has ingrained within it. There isn’t a real reason. What sucks is, he became friends with more “popular” people afterwards, which is why I think it could be a reason. I don’t blame him, we were kids, and we live in a society (lol) that encourages neuronormativity.
Anyway. The “Cure”. This is in quotes for a very good reason, because it’s a lie.
I do not appear autistic. I don’t portray many autistic behaviors at all. But I am still autistic. I am not cured. I am me, there was never anything to cure. There was a set of unique problems I had that I was able to successfully manage. And, from a more diverse perspective, there was a set of behaviors I suppressed in order to feel better about who I was - and it became who I am now. There’s a part of me that was never allowed to exist freely.
I started seventh grade- I had six classes, one per hour, and hundreds of students around to interact with. I got rid of my IEP because it was limiting my course load and I didn’t feel I needed it, and… I felt. Normal.
I wasn’t normal. I felt normal. Because neuronormalcy is not real. Feeling normal to me, was not experiencing the ableism and stigma associated with my label as autistic.
(Disclaimer, this is a rough comparison. It’s not perfect, at all, and I don’t mean to misrepresent any part of being transgender. It’s meant to relate my experiences to what I’ve heard from others. Respect gender identity, please)
It could be compared to finally passing as your gender within the transgender experience. You’ve been misgendered by so many people, even discriminated against for nothing except your appearance, and then one day you notice… it’s not happening anymore. If society had different general ideas about gender, would you have experienced that discrimination? Would that mislabeling be as bad? Probably not.
I was still the same person I was in sixth grade. I had made more friends, I had changed environments, but now… I was “cured” of autism? If that’s all it was, I never had autism. I was just a person, struggling because I was neurodivergent (I think this is also a huge part of why autistic people can feel impostor syndrome within their own identity as autistic - there are so many experiences we CAN’T relate to because they are not ours! We are all different! But this doesn’t mean your voice isn’t relevant, because you suffer from the ableism surrounding your identity).
I sort of just stopped thinking about and recognizing my neurodiversity after I learned to mask. I thought I was just "normal", because I didn't feel limited or different. I was the 1% of autistic children that grew up "cured", but this year when the pandemic started my ADHD started impacting my ability to function and do school, I started reading about it more, got treatment, etc, and that led me to reconnect with the autistic community and neurodiversity as a whole, and I saw posts about neurodiversity acceptance, and I started thinking about it more. Like, I already knew that in a world of autistic people, no one is autistic, but I previously failed to draw the connection that being neurodiverse is OKAY within our CURRENT society, that is PART OF YOU that should be accepted, and I was so convinced that I was the problem, and that I "fixed" it. What I realized is that I AM still autistic, and I ALWAYS was struggling with ADHD, I had just not recognized the things in my life that were a by-product of them. I'd forgotten what it meant to be autistic because I had convinced myself that to be autistic I had to be disabled, because our society bases its perception of neuronormativity on observational parameters.
My masking is so natural to me that it's become a part of my identity as an autistic person, so it's really hard to accept that my voice is valid. I've bent all of the traits that used to make my life difficult into just quirks of my personality or mildly annoying things that I do- so I don't fit the neuronormative stereotypical mold of being autistic anymore. I think of myself as just a mostly neurotypical person because… there never was a neurotypical person! I've been learning to embrace the part of me that was never allowed to exist freely because it was seen as a problem to be solved in our society. Don't get me wrong, I am glad that because of my masking, I don't have meltdowns daily! I'm glad I can talk to my peers without fear of being seen as disabled or "lesser"! That's awesome! But the only reason it was necessary is because the system that I existed in fosters neuronormative ideas, underestimates the abilities of autistic people, fails to accommodate neurodiversity, and fails to normalize neurodiversity in the social world.
Autism Speaks (ew)/Organizations
I include this here because Autism Speaks represents a lot of very harmful ideas contrary to the entire point of this document. They don’t focus on actually helping autistic people - their main focus is advertising, harmful “awareness”, and lobbying. Less than 5% of their budget is actually spent helping autistic individuals. They fail to represent actual autistic people in the organization itself, they research and promote harmful ideas counter to the very idea of neurodiversity like cures to autism, they have a garbage track record when it comes to recommending treatment or resources and their advertising only increases the stereotypical perception of autistic people.
Don’t support this organization, don’t donate to any organization that doesn’t include the group it’s trying to represent… in its representation. That’s just a bad organization.
Here's a good starting point for organizations: Autistic Self Advocacy Network
If you want to support autistic organizations, look into how they actually represent autistic people and how actually autistic people view it!
What’s unfortunate is that a lot of the structures and organizations designed to help autistic people end up creating more ableism and promote neuronormativity. I hope this is something we can get rid of.
Note that not supporting Autism Speaks includes not using their imagery, colors, and campaigns to represent autism awareness or acceptance.
This includes:
- Puzzle pieces (Use a rainbow infinity sign instead of a puzzle piece as a symbol of acceptance)
- The color blue (use red instead)
- Wearing blue on Autism Awareness day (wear red instead, and make sure to educate others on neurodiversity acceptance)
- "Cures to autism", and other harmful ideas and generalizations about neurodivergence.
Promote acceptance and understanding, not just awareness.