This is the first installment in an ongoing series in which I will post answers I have previously given to questions relating to autism. My hope is to provide quick and easy answers to common questions about ASD. This question and my answer has previously been posted on a question answering website.
Question: “What is stimming? I’ve been diagnosed with Asperger’s, but I don’t think I ever do that.”
“You do. Everybody stims, even non-autistic people.
Stimming is short for self-stimulation. Stimming is making repetitive actions for the purpose of stimulating one or more of the 25 or so senses.
Some examples of stimming that are common in the neurotypucal population include:
Bouncing your leg up and down while seated.
Twirling your hair
Biting your fingernails
Popping your knuckles
And others. Anything that’s somewhat repetitive and stimulating.
Some examples of stimming that are often times thought of as being an autism thing (though I’ve seen neurotypicals do many of these under extreme circumstances):
Flapping your hands
Rocking back and forth
Chewing on things
Pacing (even when not anxious, upset, etc.)
Smelling foods before eating them
A fixation with moving objects
A fixation with touching/seeing moving water
Spinning in circles
Wringing your hands
Echolalia (repeating a word or phrase someone else said over and over)
Palilalia (repeating a word or phrase that you said over and over again)
Playing music at high volumes (even people with noise sensitivities in other circumstances may crave loud music, including me. This is also common among neurotypicals).
Touching objects to feel their texture
Making repetitive noises
General fidgeting (again, there’s a double standard here it seems)
And many many many others.
Hope this is clarifying. Stimming is a natural human behavior, but autistic people tend to stim in non-typical ways that other people find obtrusive, inappropriate, etc.”
Believe it or not, the anti-vaccination movement is still going strong, particularly in the United States. One of the most famous claims by these people is the idea that it is vaccines are what cause autism. I shouldn’t have to do a lengthy post refuting this, you should know at this point that vaccines absolutely do not cause autism, or any other recognized disability. They don’t increase your likelihood of developing any disability. This has been test countless times by dozens, if not hundreds, of independent, credible research organizations. There is simply no correlation anywhere in any scientifically sound data.
This does not, however, stop the anti-vaxers from saying this. Over and over again. I’ve found they can be rather unpleasant to engage with in discussion or debate. I saw an anti-vaccine comment on an open Internet forum, specifically again making the claim that vaccines cause autism, so I took the ten minutes to bring together all the evidence in a fairly matter-of-fact reply. The meanest thing I said was “Get out with your pseudoscience.” This is the response I was given:
“You are a horrible person! I wouldn’t put it below you to point and laugh at vaccine damaged children!”
This is what is known as an ad-hominem argument, and it’s a logical fallacy. But really, it’s not an argument at all.
By “vaccine damaged children” she of course means autistic children. It wasn’t stated anywhere on the page that I myself am autistic, so she didn’t know. In my reply to that, I informed her that I’m autistic, so no, I don’t exactly point and laugh at autistic children (and that reply immediately blew up with likes. Yay!).
But, the use of the word “damaged” to describe autistic people is part of the rhetoric that myself and many other autistics have been fighting against for years. Autistic people are not damaged. We are just different. Yes, we struggle in this world not made for us, but I’ll tell you that most autistic people will tell you that they suffer because they live in a society that isn’t accessible to autistic people and not because of autism itself.
Rhetoric like this directly hurts autistic people. Fear is such a common and completely unnecessary response to autism. Words create action, and calling autistic people less-than, broken, defective people is why people can murder their autistic children while in mid-meltdown and then receive basically no sentence (not even prison time) because the judge “understands” how hard it is to have one of those *terrible* autistic kids. Yes, this happens, too often to count unfortunately. It’s why it’s so hard for people to embrace autism acceptance.
People have forgotten how bad the diseases that vaccines eradicated were. Pertussis, also called whooping cough, is now easily preventable by vaccine. But before this, it was a killer. The National Institutes of Health reports that in 1922, there were 107, 473 cases of Pertussis in the United States, resulting in 5,099 deaths. It gets even scarier in areas that had less access to medical care. Worldwide, during pertussis outbreaks, it has been estimated that the disease could have a mortality rate of up to 38.6%, meaning pertussis, at some points, was the the cause behind 55% of children who died under the age of four. Historically, whooping cough was the thief that came in the night and stole children, certainly not autism.
Polio is even scarier. Polio is a disease that causes all of your muscles to literally waste away. This included the muscles that facilitate breathing. Total paralysis can come on in a number of hours. People with severe cases of polio were forced to live their lives in the iron lung – a lifesaving medical device that looks like it came out of a steampunk sci-fi novel – simply so they could breath. Waiting rooms turned into polio wards as hospitals overcrowded during the polio outbreaks of the 1950s. Polio can cause lifelong disability, if not death. (See: The Last of the Polio Survivors) Polio has since been essentially driven extinct because of the polio vaccine.
By not vaccinating your child out of fear of autism, you are saying that you would rather your child have one of these, or many other, diseases than be autistic. You’re saying you would rather your child be paralyzed than autistic. You’d rather your child be dead than have autism. It doesn’t matter if autism actually is caused by vaccines or not at this point, any autistic person (or any sane person) would tell you it’s better to be autistic than be dead.
This is why the anti-vaccine movement is offensive to autistic people. It says “we’d rather people die than be autistic.” It says “I’d rather my child die than be like you.” Why this is hurtful shouldn’t need to be explained.
There are people who straight up say “I’d rather have a dead child than an autistic child,” and those who mean similar when they say “autism is worse than cancer.” (Which is additionally offensive on two fronts because I’m an autistic person who has lost loved ones to cancer.) They say this when they shovel money at research into finding a genetic marker for autism so autistic fetuses can be selectively aborted. This rhetoric is offensive and directly hurtful to autistic people living now.
So we should fight the anti-vaccine movement not just because of the potential health risks it poses and because we should fight pseudoscience, but also because it is offensive and harmful to your friends, neighbors classmates, family, or even yourself.
For the past decade or so, there are a lot of people who have been pushing for the use of what is called “Person First Language.” Basically, the idea is that when you’re talking about a disabled person, you’re supposed to always put the word “person” before any description of disability. For example “person with autism” or “person with cerebral palsy” or “person with a hearing impairment.” This as opposed to what I will call “identity first language,” which would look like “autistic person” or “deaf person” or intellectually disabled person.”
The supposed logic behind it is that disabled people are people, and so we need to honor this by literally putting “person” in front of their disability.
But here’s the thing: the mindset behind this can actually be rather dehumanizing, and accomplish the exact opposite of what person first language is supposed to do.
You’ll notice this blog is written almost entirely in identity first language. This is intentional. Part of that has to do with the fact that person first language is awkward and clunky when used all the time, so writing and speaking just flows better with identity first language. For the most part, however, I am using identity first language because I have specifically chosen to identify myself this way (and because it is the preference of most of the autistic community, but more on that later).
You see, there are all kinds of things that we describe ourselves as. You might be an American, an athlete, a Jewish person, a woman, a brunette, or any number of other things. And, of course, none of these things prevent you from being a person. So, by the logic of person first language, shouldn’t we be demanding to be called a person who lives in America, a person with athleticism, a person who belongs to the Jewish faith, a person with femaleness, or a person with brown hair? No one is insisting this, so why is it different with disability?
Disabilities are no different than these other things. They’re just part of life for some people. Disabilities don’t make you any less a person than any of the other things I just mentioned, so why must we put “person” in front of disabilities and not anything else? Insistence on person first language has the underlying assumption with it that a disability somehow makes you less of a person, and so therefore we need to put person in front of the label to make up for this.
And you shouldn’t need to hear “person” before autism to still consider me a person. That should be a given. It should be blatantly obvious that that I am a person. If you honestly need a constant reminder that someone with a disability is a person, then you seriously need to open your mind.
I’ve heard some defend person first language by saying something to the degree of “it’s rude to define people that way.” But is it really? We define people by their characteristics all the time. Someone might be an athlete, and we call them athletic, not a “person with athleticism.” Again, why is it different for autism? Here again, person first language makes the assumption that a disability is automatically a negative attribute. And this can be offensive.
Disability communities that reject person first language, like the Autistic community, the Deaf community, and the Blind community, do not see their disabilities as negative attributes. One of the key focuses of the Neurodiversity movement is that while autism certainly is a disability that can cause challenges because of the way the world is set up, it is not a negative characteristic. It is just a difference.
You see, I am not Quincy with some autism sprinkled on top. As was once stated, “I don’t ever forget to pack the autism when I go on a vacation.” Autism affects the way I process the world, and therefore it is deeply engrained in who I am.
“But autism doesn’t define you!” They say. But here’s the thing: autism does define me. It defines the very way I see, understand, and interact with the world. It is a deep part of who I am. And that is awesome! I am autistic, and I am proud of that. It’s just one of the many things that makes me who I am, and there is no need to make it seem negative by using person first language.
Most of the autistic community, and to an extent the larger disabled community, prefers identity first language. Each person has their own preferences, and there are a few disability communities that prefer person first language, and these preferences should be respected. However, this goes both ways. The autistic community has decided that identity first language is our preference. So, what actually is rude, is to correct a person on how they them self choose to talk about themselves. I’ve been corrected so many times by people who think I should be using person first language when I’m literally describing myself. Every time it happens, I want to scream. It especially frustrates me because, as an autistic person, I struggle to communicate a lot of topics, and so by correcting me I also know they’ve paid more attention to that than to what I was actually trying to say.
In the end, person first language, while meaning well, is actually built on a few assumptions that are rather ableist. Person first language ends up doing the exact opposite of what it intends: it often dehumanizes autistic people. (Plus, it’s really only applicable to English because of our grammar structure. For example, “person with autism” in Spanish is Persona con autismo while “autistic person” is Persona autistico/a. The person comes “first” in both cases.) So, I encourage anyone reading to stop the insistence on person first language when it comes to autistic people. It really isn’t what the majority of autistic people prefer. And I ask that you please respect how each person decides to talk about themselves, and know that “autistic” is often said with pride. It is not a derogatory term or a four-letter word.
For the past two and half years, I’ve been attending the same high school: Faith Christian Academy. This school has been a fantastic experience after spending most of my life trudging through a public school system that doesn’t cater well to people like me who process the world differently, and I could go on about how this tiny private school handles disability much better than the public school district I attended, but that is for another post.
My younger sister goes to the same school as me at the moment, but I had a year in head start in which I was in high school and she was not. As such, I was able to become known at school before my sister came to the same school. My sister and I are essentially polar opposites in most regards, so apparently it was rather interesting for a lot of people to interact with both me and my sister given how completely different we are.
One of my favorite things my sister tells me about is the things people ask and say about me. In particular, the question “What does he have?” is one I like to hear about. There are many things I have of course, but obviously what’s being asked here is what identified disorder/s I have. I have multiple identified disabilities, but the answer my sister always gives is “Quincy is autistic.” According to my sister, the responses people give back to this sometimes include a little element of surprise. They’re not necessarily surprised to hear that I have something like autism, since they clearly picked up that I was different enough that they asked my sister about it. I do “show” autism. But because of their preconceived conceptions and stereotypes, I do not immediately scream autism to them.
This is unfortunately because autism is an incredibly broad thing that is often portrayed by a few narrow stereotypes. The official title for autism is “Autism Spectrum Disorder,” or ASD, with “spectrum” referring to the fact that autistic people are all incredibly different and present in different ways. Autism is not diagnosed by checking off symptoms from a list. However, whenever the media portrays an autistic person it is usually presented as a few set stereotypes. You’ve got the socially inept genius, the clueless savant, the emotionless robot, the non-verbal toddler who rocks and flaps in the corner, the continuous meltdown, the “mysterious” child who hits himself and everyone is clueless as to why (I know why he hits himself, because I do that too, but that’s for another day). All of these are terrible portrayals of autism, and are stereotypes that attempt to pigeonhole a very complex topic. However, this is what most people associate with autism because this is what they know. Or, they may only think they know a single autistic person and use them as their own stereotype. Whatever is the case, people are usually shocked when a person who doesn’t meet their preconceptions turns out to be autistic.
A big reason of me starting to write on this more open blog is change this. I want to give autism from an insiders perspective, and to offer resources where people can hear from other autistic people in their own words. I’m doing this because, unfortunately, autistic people are rarely included in conversations about autism. I’m doing this because I believe education is the best road to acceptance. I’m doing it to fight the mad media, the fear-mongering press, and the stereotypes. It’s why I’m openly autistic, and am glad people pick up on my differences. It gives me an opportunity to make the world better for me and people like me. I am glad my sister answers “Quincy is autistic” when people ask what I have.