An Autistic Woman Explains Common Autism Characteristics, Misconceptions, and the Neurodiversity Movement
Basics- What is autism?
Autism is a neurological pervasive developmental disorder. That means it is a different way of thinking and growing that affects every part of a person’s life. Autism is diagnosed by looking at the three ‘pillars’ of autism:
- Repetitive behavior
So, let’s take a closer look at these things, from an autistic perspective. (When explaining language and communication I’ve kept my explanations pretty individualized- if you would like to learn more about these categories in general, the National Autistic Society has some great information)
|I don’t think in words, or pictures, rather I think in something that is impossible to communicate to you- it's like a combination of pure sensation and emotion that is somewhat similar to music. -- Catlaina Vrana|
First is language. Autistic people have a hard time developing language to effectively communicate with others. Language is something that is foreign to me. I don’t think in words, or pictures, rather I think in something that is impossible to communicate to you- it's like a combination of pure sensation and emotion that is somewhat similar to music. When you are autistic, speaking or even communicating with others is like always translating your thoughts into an unknown language. When I want to say something that is not a script, echoed, or practiced, I go through a process of translation- I think, translate the thought into an image, then a word, then a pronunciation, than into a plan of movements that I try to get my muscles to cooperate with. That’s why things such as PCS or AAC is helpful- it acts as a bridge (though still an incomplete one) that helps me in the translation process.
This category is unlike the other two, as it is more of an end than a means to me- meaning from my perspective it is the result of other factors and is just symptomatic, rather than a pillar of the disorder itself. This is part of being autistic that is most noticed by others. Some examples of this are:
- Not responding or looking up when one's name is called
- Not mimicking other’s behaviors
- Not making eye contact
- Not sharing interests, or sharing too much of interests.
Most of this is the result of differences in language, not just an inability to relate. Also in this category, people also like to mention ‘non functional language’, such as echolalia, or scripting. However, I look at this as very functional behavior. When I echo what you said, that’s me communicating to you that I heard and have successfully translated your words in my head. In the instance of scripting, I’ve always used it to convey emotion or humor. When I was very young, I would constantly script Joseph and the Amazing Technicolor Dreamcoat, which not only served a purpose in communication, but also helped me develop the motor skills used for speech.
When you are autistic, words are so foreign to you, that you tend to play around with them a lot, which is how people learn in the first place-let people explore by using this ‘not functional’ speech- we are trying to reach into your world.
I’ve noticed that when professionals talk about autism, it’s mostly about language and communication, but when autistic people talk about autism it revolves around this third pillar- repetitive behavior. So, join me in taking a closer look at this aspect of autism.
So what are ‘special interests?’ These are what you have when you mix a deep passion for a topic along with extreme attention to detail. Mine are Jonas Salk (creator of the polio vaccine), Joseph and the Amazing Technicolor Dreamcoat (movie), and cartoons. Especially Steven Universe. So why? Why have I researched and watched these things so many times that I nearly have the dialogue memorized, and that when my mom hears the VHS player in the background, she groans really loudly? These things, for some reason, make sense to me- and when you’re autistic, making sense of the world can be hard. The answer to why special interests are varied so much is that autistic people are people- our interests vary.
Routine and order
I have a similar explanation as to why I prefer routine and order. It makes sense to have a routine, because then things are predictable. If I know that I always have art class at 3:00, then I can brace myself for the smell of glue and the sound of scratching pencils. In a routine, the chaos I experience is controlled.
Sensory Processing Disorder is a neurological disorder in which sensory input is interpreted incorrectly in the brain. Most autistic people experience this ‘sensory misinformation’ to some degree. There are seven main senses- the five you know, and also vestibular and proprioceptive sense, which tell you where your body is in relation to other things, and how to control and react to that. You may use these senses to touch your nose while closing your eyes, or knowing the amount of force necessary to pick up a flower verses picking up a table. SPD affects a person in many ways- it can make you over or underreact to sensory input, making usually mild situations feel unbearable, overwhelming, or even physically painful. There is a common misconception around SPD, especially with noise. It’s not really about whether the noise is loud or not, it’s more about how my brain is perceiving it. A quiet day in Walmart can be worse than listening to music on full volume.
To deal with sensory or emotional overload, many autistic people have ‘self stimulatory behavior’ or ‘stims’ for short. This can be flapping hands, jumping, repeating sounds or phrases, rocking, spinning, or any other repetitive movement. These repetitions make us feel grounded, and is something we are sure will feel the same way every time. To me, stimming is as needed as blinking. Never, ever stop stims just because they look strange to you. If stimming becomes disruptive (like verbal stimming or echolalia) finding an alternative stim can be helpful, such as offering a fidget toy. If stimming is physically hurting the autistic person themselves, or others, they might be telling you that ‘I no longer feel in control of my body, I am having a hard time thinking, and I need your help.’ Keep in mind that behavior is communication.
The last thing I want to talk about in the general information part of this article is motor difficulties and autism, specifically dyspraxia or apraxia. This is also a neurological disorder, and it affects motor planning. This can make it difficult to control your body. For instance, I can’t just think ‘I’m going to tie my shoe’- I have to plan all my movements needed to complete the task. Dyspraxia can also make it hard to speak- this is why I prefer to use alternative speech in most situations, but I don’t mind reciting a practiced speech.
Civil rights/misconceptions Intro
In the second part of this article, I will be covering more of the civil rights associated with disability, specifically autism. I will be presenting these in comment form, as all of these have been said or asked of me.
“I thought only kids/boys ‘got’ autism?”
Autistic kids grow into autistic adults- even if they have been conditioned to appear indistinguishable from their neurotypical peers, they are still autistic in their neurology. You don’t “get” autism- it’s a developmental disorder, not a disease.
“Everyone is a little autistic!”
Try replacing autism with any other disability in that sentence, and see how well that goes over.
“Why don’t you like puzzle pieces? I thought that was for autism?”
Many older autistic people actually prefer the ‘neurodiversity’ sign. This is because it represents the complexity of autism and the wide spectrum of people it represents without the negative connotations associated with puzzle pieces- Example: it needs to be solved, there are pieces missing, etc. Puzzle pieces are also associated with a group that regularly exploits, abuses, and speaks hatefully of autistic people.
“So...how severe is your autism?”
Functioning labels are not set in stone. Not only is this question pretty intrusive, but it is impossible to answer. There are times that I might seem ‘high-functioning’ and times I might seem ‘low-functioning’. These labels might be useful for ‘rule of thumb’ but are not so great in judging a person. Remember- if a person is called ‘high functioning’ their needs are ignored, and if a person is called ‘low functioning’ their abilities are ignored.
“...doesn’t look autistic” “...looks very autistic.”
There are invisible disabilities. Autism is one of these. Sometimes, you might be able to pick out some hints that a person is autistic- their speech may sound different, they may use AAC, you might see them stimming, or toe-walking. But autism has no known physical markers. Secondly, if someone uses ‘not looking autistic’ as a compliment, it can be pretty hurtful. While autism has its challenges, it makes me no less of a person- being autistic is part of being me. Hiding my symptoms, or ‘passing’, has no positive impact on my life- pretending to be normal is not my goal. I can’t be ‘kinda autistic’ or ‘super autistic’ based on how I appear.
“They are autistic, so they are in their own world”
To answer this question, I will be including an excerpt from Jim Sinclair’s 1993 speech, “Don’t Mourn for Us.” This speech is addressed to parents of autistic children, and I found that Mr. Sinclair laid out his thoughts eloquently.
Autism is not an impenetrable wall
You try to relate to your autistic child, and the child doesn't respond. He doesn't see you; you can't reach her; there's no getting through. That's the hardest thing to deal with, isn't it? The only thing is, it isn't true.
Look at it again: You try to relate as parent to child, using your own understanding of normal children, your own feelings about parenthood, your own experiences and intuitions about relationships. And the child doesn't respond in any way you can recognize as being part of that system.
That does not mean the child is incapable of relating at all. It only means you're assuming a shared system, a shared understanding of signals and meanings, that the child in fact does not share. It's as if you tried to have an intimate conversation with someone who has no comprehension of your language. Of course the person won't understand what you're talking about, won't respond in the way you expect, and may well find the whole interaction confusing and unpleasant.
It takes more work to communicate with someone whose native language isn't the same as yours. And autism goes deeper than language and culture; autistic people are "foreigners" in any society. You're going to have to give up your assumptions about shared meanings. You're going to have to learn to back up to levels more basic than you've probably thought about before, to translate, and to check to make sure your translations are understood. You're going to have to give up the certainty that comes of being on your own familiar territory, of knowing you're in charge, and let your child teach you a little of her language, guide you a little way into his world.
... The ways we relate are different. Push for the things your expectations tell you are normal, and you'll find frustration, disappointment, resentment, maybe even rage and hatred. Approach respectfully, without preconceptions, and with openness to learning new things, and you'll find a world you could never have imagined.
Yes, that takes more work than relating to a non-autistic person. But it can be done--unless non-autistic people are far more limited than we are in their capacity to relate. We spend our entire lives doing it. Each of us who does learn to talk to you, each of us who manages to function at all in your society, each of us who manages to reach out and make a connection with you, is operating in alien territory, making contact with alien beings. We spend our entire lives doing this. And then you tell us that we can't relate.
“No! You are supposed to say ‘person with autism!!’”
When going through disability training, many are told to use person-first language, which would be ‘person with autism’, not ‘autistic person’. However, identity first language is generally preferred among autistic people themselves, just as it is with the deaf/blind community. (‘Autistic’ not ‘with autism’ and ‘deaf’ not ‘person with deafness’) To explain why autism can really not be separated from the person, I will be including another excerpt from Jim Sinclair's “Don’t Mourn for Us.”
Autism is not an appendage
Autism isn't something a person has, or a "shell" that a person is trapped inside. There's no normal child hidden behind the autism. Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence. It is not possible to separate the autism from the person--and if it were possible, the person you'd have left would not be the same person you started with.
This is important, so take a moment to consider it: Autism is a way of being. It is not possible to separate the person from the autism.
Therefore, when parents say,
I wish my child did not have autism,
what they're really saying is,
I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead.
Read that again. This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure. This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.
For me, ‘person with autism’ sounds as silly as ‘person with Christianity’ or ‘person with Asian-ness’. Keep in mind- you can always ask which phrase they feel more comfortable with, or if they even care. And remember: we don’t need to be reminded that we are still people. This might not seem important, but it can add to the stigma surrounding autism: giving the idea that autism can and should be separated from the person has resulted in dangerous ‘cures’, psychological, and even physical abuse.
“I hate my son’s autism, but not my son.”
As I have written, autism is not separate from the person- you have to really think through your implications- try to see how that could really hurt someone’s self esteem. Autism isn’t some kidnapper or monster- it’s just a difference in neurology.
“Oh, I don’t see disability.” (I just pretend everyone is ‘normal’, like me.)
So, here’s why I like ‘seeing past stereotypes’ but I don’t like ‘seeing past disability’. My accomplishments are not made ‘despite’ ‘my autism’- my accomplishments are the result of hard work and my way of thinking and processing the world, which is very much impacted by being autistic.
|Could you imagine how boring the world would be if we were all the same? It can be hard listening to that, especially if a person needs intensive support their whole life-but it’s not up to us to decide who is worth something, and who isn’t. You are brave to see the worth in everything- because that can take hard work. -- Catlaina Vrana|
I’m going to talk about the dreaded d-word. No- it’s not “disability”- its “difference.” I understand the need to say ‘look- this person is different, but it’s okay, because we have a lot in common.’ But our differences are not so superficial as maybe having different political opinions, or taste in music- our entire way of existing is different. This is obviously true in the cases of people with intellectual or developmental disabilities, but even true of people with physical disabilities- imagine how different the world would feel if you had to think and try very hard about tasks that, for a non-disabled person, require little to no effort. It ignores a lesson that we were taught in kindergarten: We are all made differently; those differences help us see things in a unique way, which is how people progress. Could you imagine how boring the world would be if we were all the same? It can be hard listening to that, especially if a person needs intensive support their whole life-but it’s not up to us to decide who is worth something, and who isn’t. You are brave to see the worth in everything- because that can take hard work.
Imagine your way of expressing joy is stopped, simply because you are told it is ‘abnormal’. Imagine the stares. Imagine being told you can’t feel empathy, even though you feel people’s emotions so much it bleeds into you. Imagine being told you have no comprehension of humor, because you didn’t laugh at a joke told in another language. Imagine there are assumptions made about your intelligence, just from the way you look. Imagine that part of your being, something that has colored the entirety of your existence is likened to a tragic disease, and is something that people enjoy making the point is separate from you. Imagine being one of the 219 people who were killed just in the past 16 years, because they committed the crime of existing.
However, things are changing, and that is good! Honestly, I don’t know why I wrote a children’s book about autism- children are the ones who are open to learning new things. All I ask for is that mindset. Be open. Be listening. Be ready to feel uncomfortable. Be ready to lose the idea of ‘normal.’ Be ready to love everyone, even those you don’t quite understand. Thank you for reading.