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10.20.19

Guest Post: Understanding Autism for More Complete Inclusion

Posted in Free/Libre Software at 6:07 am by Dr. Roy Schestowitz

Uncredited article published verbatim

Discontent

Summary: “…assuming that autistic people are all the same isn’t only technically wrong, it is misleading and leads to harmful and needless misunderstandings.”

Wilson Bustos recently said on the guix-devel mailing list: “IMHO, We want [deep] diversity, that means thinking diversity not only ‘gender diversity’…” He’s concerned about the attacks on Richard Stallman, and that’s where the context of this article begins. But this is not only about Stallman.

Richard Stallman is not diagnosed with AS, as far as I know. There is speculation about whether he is autistic, even in the biography of him that was republished by the Free Software Foundation. He definitely shows symptoms of being on the autistic spectrum.

“We are fond of pointing out that women are important to computing and computing history, and that’s very true — many important computing pioneers are female, including some of the most important pioneers.”A slightly more detailed knowledge of what autists go through would help the Free software community a great deal. This is not only beneficial for people with autism, it helps everyone understand — sometimes when previously unknown things become more familiar, they are less frustrating too.

We are fond of pointing out that women are important to computing and computing history, and that’s very true — many important computing pioneers are female, including some of the most important pioneers. Their contributions are nothing short of priceless. The same can be said of people with AS, or autism spectrum. If we want more of their contributions, it will help if we stop working to shun and mischaracterise them.

This article will be full of generalisations, because those generalisations will help you become more familiar with the things people with autism go through on a daily basis.

“…assuming that autistic people are all the same isn’t only technically wrong, it is misleading and leads to harmful and needless misunderstandings.”The single most important thing to know about autism though, is that no matter how similar all people with autism may seem to you, autists in reality vary greatly. Yes, there are traits that can clue you in to someone possibly being autistic. Stallman for example, has many of those traits. But assuming that autistic people are all the same isn’t only technically wrong, it is misleading and leads to harmful and needless misunderstandings.

Three are several common terms that have entered the public awareness; people generally use them with good intentions, but they don’t always know what they’re saying or implying. “High-functioning autism” or HFA is one of these. Most people seem to think of “High-functioning autism” as being able to “act like a regular person.” For illustration, let’s compare that to someone who is in a wheelchair.

“We’ve even come far enough socially that most people won’t make the condescending faux pas of saying “like a normal person” to refer to someone who walks on two legs.”“High-functioning autism” is a term that may prove useful in some professional contexts, but a lot of people aren’t going to take it as a compliment. You probably don’t mean it in a condescending way, but picture someone in a wheelchair… Here’s a fact about people in wheelchairs: some of them can stand up and walk. I once saw a friend do it. He can get up and make it a few yards forward before he has to sit down again. What if we called him a “High-functioning wheelchair user?” Does that mean people who can’t stand up are “Low-functioning wheelchair users?” Or perhaps he was a Superuser. In everyday use, this term is just useless and condescending.

As for my generally wheelchair-bound friend, since he isn’t paralyzed — couldn’t he just, you know, “try harder” and “walk like a normal person?” No, because he isn’t in a wheelchair out of laziness. In the same way that you can’t wave your arms hard enough to fly, he can’t move his legs enough to walk “like a normal person.”

“Another group of people we try to be more understanding of these days is the LGBTQ+ group.”We’ve even come far enough socially that most people won’t make the condescending faux pas of saying “like a normal person” to refer to someone who walks on two legs. Sure, on average, two is the number of fully-working legs that you would typically find on people. That’s tricky to dispute. But at some point we decided that being in a wheelchair didn’t disqualify you from being referred to as a “normal person,” because in the ways that really count, people in wheelchairs are basically like you and me. Isn’t that nice?

Now I’ve been careful to avoid it as much as possible, but we are on the verge of getting politically correct. You may think I’m about to tell you that political correctness is the solution to all this, that this is an article about “how to properly talk about autistic people” and how to avoid being offensive.

But for people who know what it’s like to be held to social standards they may never fully comprehend (for some it’s a mystery) or manage (for some it’s just impossible, as hard as that is to believe) this is not going to be an article that pushes political correctness — just better understanding. Rather than than tell you to be inoffensive, I’m going to have you imagine that you have a friend who is autistic — and you’ve always wanted to be a better friend but didn’t know how. Replace “friend” with “coworker” or “family” if it applies to you.

“One thing that transgenders and autists factually have in common is a higher suicide rate.”Another group of people we try to be more understanding of these days is the LGBTQ+ group. This is not actually a single group, but it is often beneficial to advocate LGBTQ+ rights at the same time, due to some commonalities. Hey, LGBTQ+ have a rainbow, autists have a spectrum; and I’ve typically supported PFLAG over HRC for example, because although HRC has that really cool “[=]” logo, they sort of sold out transgenders years ago, and PFLAG is much cooler as far as I know.

One thing that transgenders and autists factually have in common is a higher suicide rate. This definitely isn’t a contest, I don’t know which suicide rate is higher. I know that both have a significantly higher suicide rate than average. While I don’t know the exact reasons that transgenders have a higher rate of suicide, they often deal with lots of bullying and isolation and fear. This is in fact, also true (to whatever degree) for autists.

“Autistic people are people, and autistic people have autism.”Just as HRC is known for selling out transgenders at one point, Autism $peaks (sometimes spelled mockingly with a dollar sign, like with Micro$oft) is known for selling out autistic people. Many autistic people prefer self-advocacy, and point out that “Autism $peaks doesn’t listen.” Part of the reason you may feel you know more about autism than you do, is because of A$ promoting a misunderstanding of people with autism. A better organisation is ASAN, the Autistic Self Advocacy Network. You can take their advocacy over this introductory article; they know more about this stuff than I do.

By the way, is it “autistic people?” Or “people with autism?” I honestly don’t know, if you’re referring to an individual or a closely-knit group that have a preference you might ask. I don’t think there is consensus on this. I’ve never gotten in trouble for saying either, and to me this sounds like a matter of mere political correctness. Autistic people are people, and autistic people have autism.

“Here’s another fun fact: just as not every gay person wants to be “outed” and would prefer to choose whether to “come out” or not, not every person who is autistic wants to be “outed” either.”Identity is a funny thing — nobody wants to be “reduced” to their autism, and yet for very many it is certainly part of their identity. You may encounter a similar feeling with someone who doesn’t want to be reduced to their homosexuality, even though they feel it is an important part of who they are.

Here’s another fun fact: just as not every gay person wants to be “outed” and would prefer to choose whether to “come out” or not, not every person who is autistic wants to be “outed” either. I’ve known people on the spectrum who consider themselves “closeted.” Why? Because they know how they get treated (differently) once they are outed, even by people closest to them who would never, ever want to do that on purpose. But it’s subconscious and mostly due to simply making countless assumptions about an individual.

So, with every trait mentioned here, remember: just because many people are similar in some particular way, doesn’t mean it’s true about the autist you know.

“For example, we have typical sizes for doors. If we want those doors to accommodate wheelchairs, we have a different standard for that.”In fact if you make a list of every person you know, and their good and bad points, you may find that some of their strenghts can be weaknesses and vice versa: like someone who you admire for being forward and “telling you straight” how they feel, can also be someone you worry about saying the wrong thing at the wrong time. Is this a good or a bad trait? It’s both, depending on the situation. It would be nice if people were perfect, and all their “good and bad” traits only manifested as “good” traits. But if we are really fair, nobody is perfect, and sometimes we take the good with the bad.

That doesn’t mean we don’t have standards, of course. For example, we have typical sizes for doors. If we want those doors to accommodate wheelchairs, we have a different standard for that. Sometimes our standards are created without fully understanding the needs of people that will be subjected to them. They could be very good standards in most contexts, but it’s probably also good to realise that some standards really don’t work in all situations.

“More things about autists: some can’t talk. Other have “selective mutism.” It’s difficult to understand selective mutism until you understand how incredibly overwhelming it can be to be autistic.”Standards still exist, but “Universal standards” are harder, if not impossible. Something to think about, when you’re building a community (or a door.) Maybe your standards do too much to exclude autists. Maybe your policies are more about ejecting people you don’t know how to work with, and you tell people “we’ve done everything we can to work with them.” Do you really know that for a fact, or have you simply tried every idea you (or your team) were able to think up on your own?

More things about autists: some can’t talk. Other have “selective mutism.” It’s difficult to understand selective mutism until you understand how incredibly overwhelming it can be to be autistic. Have you ever had a panic attack? Some panic attacks can be so intense that you feel like it’s necessary to go to the E.R., like you’re going to have a heart attack or can’t breathe.

“Some panic attacks can be so intense that you feel like it’s necessary to go to the E.R., like you’re going to have a heart attack or can’t breathe.”Would you be angry at someone in that situation if they got very loud, or stopped being polite? I hope I wouldn’t. Let’s be fair to ourselves, too — we have all these pre-conceived notions of what appropriate behavior is. When people don’t act that way, we feel like they’ve let us down or disrespected us, or simply weren’t raised properly. How much we are willing to tolerate that sort of thing varies, but we tend to think of society, of civilization as something that has certain standards of behavior that don’t include meltdowns and panic attacks.

We don’t appreciate when these standards are not followed, but we recognize certain crises or emergencies as exceptions. If people run around screaming, we tell them to calm down immediately. If their child is looking out the window of a burning building, we are probably more compassionate due to the circumstances. If someone is hearing impaired but still vocalises, we realise that they probably don’t have full control over their volume, for reasons that are likely obvious.

In fact we are already compassionate towards people with certain disorders that affect their behavior and cause them to be louder or act less the way we expect, when we can recognize the signs of those disorders. Because autism is such a broad spectrum and because of masking or being closeted, we don’t always know if someone is acting out because they are overwhelmed and having a meltdown, or because they are simply being unreasonable.

“Because autism is such a broad spectrum and because of masking or being closeted, we don’t always know if someone is acting out because they are overwhelmed and having a meltdown, or because they are simply being unreasonable.”It’s here that everybody should pause for a minute, and consider the phrase “Look, this is no excuse — I have friends that are autistic and they act better than this.” They’re really not all the same, and you’re not a doctor anyway. (Even if you were, qualified doctors don’t always agree. They deal in medicinal tablets, not stone ones.)

Now consider an old cop show where they’re interrogating a suspect. A variety of techniques are used in an interrogation, such as shining a bright light into the face of the suspect. The officers may yell and/or threaten the person they want information from. They may lie or try to confuse the person. All of these techniques are designed to create a great deal of stress, to get a person to lose more and more control of themselves so it’s more difficult to lie.

For many people on the spectrum, their life can be like this the majority of the time, if not constantly in some situations. In many “otherwise normal” situations, they may have great difficulty sleeping, concentrating, hearing words, speaking, relaxing, working, or walking. Plus, not every trait common among autists is actually autism — autism has several co-morbidities, such as OCD and dyslexia.

“Some people can read at the age of 2, without ever formally learning or being taught. Don’t worry, your child isn’t possessed. They’re probably just on the spectrum.”Other traits associated with autism include dysgraphia, hyperlexia and dyspraxia. Since you may not have heard all of these (it is assumed you have heard of dyslexia and OCD) here are some very quick introductions to these terms:

Dyspraxia: difficulty moving. At its simplest and mildest level, this could be a general clumsiness, extreme difficulty dancing, or even just walking in a way that is “a little off” (and don’t think this can’t affect people’s perception of a person.) “Oh, he’s a bit weird.” “Yeah, why does he walk like that?” This doesn’t mean the person with dyspraxia is clumsy in every way. They may manage to become a dancer or learn martial arts, and simply never be cut out to open a coffee shop (because they drop too many things.)

“Some things that can create interrogation-like stress in people with autism: noises, distractions, lights (which are far brighter for them than for you) and crowds of people.”Hyperlexia: reading at an early age. Some people can read at the age of 2, without ever formally learning or being taught. Don’t worry, your child isn’t possessed. They’re probably just on the spectrum.

Dysgraphia: welcome to Hell, if you’re going to have to spend a lot of time doing handrwriting. Remember that guy who wasn’t paralyzed and could walk several feet out of his wheelchair? Let’s say dysgraphia is sometimes a bit like that, but with writing. Have you ever noticed that a lot of doctors have terrible handwriting? That could be dysgraphia.

Remember, if you’re reading this (and you’re not the website owner) then you’re probably not a doctor. These are useful things to learn, and useful to know if you have a child that could be autistic, but it’s best to talk to people who know more about these things than just start guessing all the time. Sadly, it can be hard to find a doctor who is very familiar with all of these issues. That’s why groups like ASAN are so important.

“They may find writing or written communication much easier than talking, because the former acts as a buffer and gives them more time to process.”Some things that can create interrogation-like stress in people with autism: noises, distractions, lights (which are far brighter for them than for you) and crowds of people. Even clothing can be horribly uncomfortable, stuffy, itchy and incredibly distracting. When someone with autism finally finds something comfortable to wear, they may not in be in a hurry to put on anything else. Ever wonder why so many technicians and coders wear old T-shirts? Well, we don’t want to feed too many stereotypes at once.

Extraneous details can be a distraction, you may find someone on the spectrum acting a bit “bossy” about how much information you give them, even if they seem to recite entire books at you.

People with autism are often powerful processors of large amounts of information, but their inputs can be flooded (like someone holding down a key on an old PC until the keybuffer is full and it starts beeping.) They may find writing or written communication much easier than talking, because the former acts as a buffer and gives them more time to process.

“And of course, many autistic people are good with computers, and we probably want them assisting us with their gifts.”You know how when you walk into a crowd you can still hear the person you’re talking to, because you can single a voice among many out? To some degree, not every person can do that. They still hear every single voice and may pick out some words, in a great din. The crowd may not seem deafening to you, but they will cover their ears. They’re not exaggerating — it can be like banging pots and pans. If you want them to hear you in that kind of noise, it may be necessary to step outside.

Some people with autism are gifted musicians. Many enjoy doing impressions or love telling jokes. Some are talented writers — a list of the “top 10 alleged autistics in history” (too early to likely gain a diagnosis) includes Lewis Carroll, the author of “Alice in Wonderland.” And of course, many autistic people are good with computers, and we probably want them assisting us with their gifts.

But since it’s terrible to simply exploit people for their talents, as the tech industry so often does — remember, these are people. You may not look at them and see people who have overcome great odds, you may not think they have overcome anything if they don’t manage their daily life exactly as you do. But it’s also very likely they worked very, very hard just to be around other people in lighting, acoustics and climate they have no control over because they’re out in public, with you. They could be overwhelmed a great deal of the time, and still manage to put that aside and share some of the things they love with you — computers, music, a hobby, some bit of knowledge that you never knew.

“Some people are simply hell-bent on getting autists to communicate better — if we expect them to, the least we can do is try to offer the same in kind.”Again, maybe you have no interest in treating someone autistic like a friend. Maybe you’d rather treat them as a “nuisance” and simply be left alone. The purpose of this article isn’t to prove anything, it’s just to shed light on a subject that is often terribly misunderstood. And if you do have a friend who is autistic, this may help you understand better.

Failing that, if you do have a friend on the spectrum and you want to be the best friend to them that you can, you can visit the ASAN website at autisticadvocacy.org or maybe ask your friend, and try to turn down the skepticism that results when someone you know says “it’s really loud and bright in here.” And you look around with your own senses, and have no idea what they’re talking about. Some people are simply hell-bent on getting autists to communicate better — if we expect them to, the least we can do is try to offer the same in kind.

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