18/18: Afterword

Well, there you go. That’s an overview of what I’ve spent the past couple of years learning. I wrote this for my partner, Sparkly, in an effort to make up for the sudden and unpleasant way ey found out about my questioning and research into autism. The style is simple and conversational because of that; this is what I’d sit down and talk to em about, if it weren’t so impractically long. I hope it can be of use to someone else, too.

My word processing program tells me this document is about 8300 words and 16 pages long. I may edit it in the future, and there are still a few sections that I decided against including which I might bring back as appendices, but the main body is something approaching finished, at least.

I owe a huge debt of gratitude to the authors of every blog I’ve linked to here, and to many others. I’ve tried to put what I’ve learned into my own words, as clearly and succinctly as possible, but I owe this knowledge to the community of autistic writers and activists that I’ve found online. Through writing about their lives, they’ve helped me understand my own.

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It’s entirely possible that when I went through this series replacing copy-pasted urls with names and links, I may have put the wrong name with the wrong post. If you notice something like that, please let me know. Also, if I’ve linked to your writing and you’d rather not be mentioned here, let me know and I’ll remove it.

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17/18: Understanding Others’ Body Language

At the same time, many autistic people have difficulty recognizing and understanding other people’s body language, facial expressions and tones of voice. I’ve seen two possible explanations for this, which I think are both probably part of it.

First, non-autistic people’s ways of expressing their emotions may be unintuitive for us to understand, since they’re often different from ours. It may take more time and effort for us to realize what certain expressions or ways of speaking mean, since we don’t do them ourselves.

Second, as I mentioned at the top of this section, difficulties that aren’t directly related to emotions or body language may take our attention away from them.

I don’t think I have much difficulty in this area myself. I’m very good at recognizing tones of voice. When I was younger, I used to be able to very reliably guess who my mother was talking to on the phone based only on her tone of voice. I don’t always notice body language, but when I do, I don’t find it particularly confusing. Very, very rarely do I notice it and find myself at a loss to explain what it means. When I don’t notice, it’s because of the third reason for problems with socialization that I talked about earlier: I’m distracted, because I’m overloaded, or thinking about what I want to say, or various other things.

Actually, I often get confused and feel awkward because I usually follow the body language and not the words when my understanding of someone’s body language clashes with what they’re saying. Spoken words may be clearer and more specific, but I tend to understand body language quickly and intuitively, so it comes through first. I need longer to process spoken language, especially if I’m not expecting someone to talk to me. The result of this is that I end up doing things like walking towards someone who is telling me to go somewhere else, because they’re turning to face me in a way that looks like they want to talk to me.

For more about social interaction and understanding body language, the comments on this post include a lot of autistic people talking about various kinds of problems with social interaction, including understanding people’s emotions from their voices and body language.  This post by thecaffeinatedautistic focuses on tone of voice and sarcasm.

16/18: Self-Expression through Body Language

As I’ve mentioned before, autistic people often express our emotions through body language in ways that are different from the norm. There’s more to that difference than the addition of stims, though– autistic people can also lack aspects of body language and facial expression that most people expect. It seems to be a pretty common autistic trait to have facial expressions that are smaller or more subtle than most people’s. I can’t count the number of times I’ve smiled for a photo and been told I wasn’t smiling enough, that I needed to show my teeth. Some autistic people also speak in a subdued or monotone way, without much variation in their tone of voice, even when they’re upset or excited.

Since I’m used to my own face and voice (and since I have a lot of other things to think about when I’m speaking) it’s hard for me to evaluate these characteristics in myself most of the time. When people react strangely to me, I usually don’t know if it was something about my voice or body language that caused it. However, as I said earlier, I have had people tell me that my deliberate, exaggerated expressions, like smiling or making silly faces for pictures, aren’t really that exaggerated. I’m not sure how my everyday speaking voice compares to other people’s, but my voice does tend to become more monotone, instead of more expressive, when I’m upset.

The responses to this post on the Real Social Skills blog have a lot of autistic people discussing how pain shows in their body language and speech, and this one by Cynthia Kim discusses differences in tone of voice.

15/18: Eye Contact

One small but significant way that autistic people often stand out as different socially is our avoidance of eye contact. The best explanation of it that I’ve seen is Amythest’s video here.

As far as I know, an Official Medical Explanation of why autistic people avoid eye contact doesn’t really exist. It’s just one of those inexplicable behaviors (or else it’s taken as proof of a lack of empathy or interest in other people.)

Based on my own experience, I agree with Amythest. It’s fairly normal for non-autistic people to look away from what they’re focusing on when thinking or trying to remember. Since autistic people are often prone to sensory overload and likely to have executive function problems, it makes sense that we’d find maintaining eye contact even more distracting than the average person does. The discomfort and even pain that some autistic people describe having when they make eye contact makes sense considering the existence of sensory sensitivites that can make other inoccuous things feel painful.

Personally, I can usually make eye contact comfortably when I’m listening to someone else talk, but not when I’m thinking hard or while I’m talking. When I’m tired or otherwise stressed, making eye contact is more difficult– it feels like an extra burden on top of all the other things I have to think about or pay attention to. Sometimes when I’m tired, people’s voices seem very loud and hard to ignore. I look away because I want to make things somehow less overwhelming, and looking away is the best I can do, especially if I do also want to hear what they have to say.

I also avoid eye contact when it comes to people who I’m neither listening nor talking to, because of social anxiety. The prospect of having a conversation with a random stranger in a public place is stressful, and I’m not confident that I can do it “correctly”/politely, so I want to avoid catching people’s attention.

14/18: Body Language and Social Interaction

Finally, I want to talk about autistic people and social interaction. There’s a whole section of the DSM 5 criteria devoted to “deficits in social communication and social interaction,” making it one of the main characteristics of autism. Over the years, there have been some remarkably awful theories that try to explain this. There are people who claim that autistic people lack any understanding that other people are intelligent and have their own minds and thoughts (the thing we supposedly lack is called “theory of mind”.) There are others who say that autistic people lack empathy, the ability to recognize and share other people’s emotions, or even that we don’t really have emotions of our own. I’m not going to address these ideas directly right now, because my main point is that there are much better, more straightforward explanations for why autistic people struggle with social interaction. I’ve already talked about several of them, in fact:

It’s hard to socialize when you have difficulty putting your thoughts into words.

It’s hard to socialize when you have difficulty understanding other people’s words.

It’s hard to socialize when you’re distracted by sensory sensitivities.

Autistic people’s problems with relating to other people are (mostly) not because of any fundamental problem with empathy or understanding. Instead, we have problems with all sorts of different aspects of communication. I’ve mentioned problems with verbal language already, and now I’m going to talk about body language and nonverbal communication.

13/18: Overload, meltdown and shutdown

In the sections about sensory sensitivities, stimming, SIBs, and executive function, I’ve said a few things about autistic people being stressed or overwhelmed. Now I want to say a little more about stress, and how autistic people’s reactions to it may be different from other people’s.

Autistic people— children and adults— sometimes seem to have very disproportionate responses to minor problems. This is partly because we can become stressed and overwhelmed more easily, as I’ve already talked about, and partly because the ways we express our emotions are often not typical. Autistic people (especially those of us with severe sensory sensitivities) may be under a lot of stress even in situations that seem calm to others, and on top of that, our facial expressions and body language don’t always show that stress in ways most people can recognize. We may also feel pressure to cover up how stressed we feel, to hide that we’re autistic or to avoid inconveniencing others. So, people around us often assume everything is fine until we’re so stressed that we start crying or run out of the room.

Two terms that are used a lot in the online circles I follow are “meltdown” and “shutdown”. Meltdown means obvious outward expressions of stress— feeling frustrated or angry and showing it through things like crying, shouting, and the self-harm that I discussed in the last section. Shutdown means reacting to stress by withdrawing— feeling exhausted and mentally foggy, not understanding or responding to what’s going on around you, physically withdrawing by covering your ears or trying to avoid people.

I get the impression that the term “autistic meltdown” originated from parents of young autistic children, as a better word than just “tantrum”. This is an important distinction to make. When people use the word tantrum, they usually mean someone is exaggerating how upset they are and making a scene deliberately, in the hopes of getting something they want. An autistic person’s meltdowns may seem unreasonable, but they aren’t fake or exaggerated. Pretty much anyone, and especially any child, will cry and make a scene if they’re pushed far enough. Autistic people just tend to get pushed farther in the course of their everyday lives.

Here are some autistic people’s descriptions of meltdown and shutdown.  (Cynthia Kim, Sparrow Rose Jones, Aiyana Bailin, CrabbyCentaur)

Personally, I go towards the “shutdown” side 99% of the time. I may not feel calm and in control of myself, but I don’t do anything that looks like losing control— I don’t lash out physically or break down crying in public. I withdraw in on myself, I speak less or not at all. Thinking seems difficult. I know I should be able to deal with the situation in front of me, but my mind stays blank no matter how hard I try to remember what I should do. If circumstances force me to keep trying over and over to do something I can’t do at the moment, then I might get too frustrated and break down, but I can usually avoid that.

From the outside, overload may look similar to anxiety– I can see how “acting like a small problem is huge and serious” is a characteristic of both– but the internal experience is completely different. When I’m overloaded, I’m not feeling anxious (whether rationally or irrationally). I’m not worrying about the greater implications of the small problem in front of me. I’m not emotionally overwhelmed. Oftentimes when I’m anxious, dealing with my emotions is the only thing I really need to do– once I’m calm, the issue is so easy to solve that it doesn’t even deserve to be called a problem.

When I’m overloaded, on the other hand, a problem that may seem small to someone else is actually huge for me. It hits one of my sensory sensitivities, or some aspect of it is too complicated for my current level of executive function. The process of trying to solve the problem is incredibly unpleasant or cognitively difficult, and my emotional reaction comes from the fact that I’m trying to do something very difficult. When someone tries to calm me down when I’m overloaded, it often feels like they’re adding even more problems to my load– now I have to solve a very difficult, frustrating problem and, meanwhile, act like I’m not struggling and frustrated.

When I’m feeling overloaded, the main thing I need is to stop struggling with whatever overloaded me. I either need assistance to get it fixed as quickly as possible, or to take a break from trying to deal with it, including from trying to act calm and controlled.

12/18: Self-injurious behaviors

I don’t really want to write about this, since I have a lot of difficult personal feelings about this topic, but if you look into any further information about autism it’s likely to come up, so here I go.

In addition to stims that look a lot like typical fidgets, and unusual but harmless stims like hand flapping or spinning in circles, some autistic people do things that are similar to stims, but are self-harming.

The classic examples are hitting oneself and head-banging.

In keeping with the overall assumption that autistic people’s stims are involuntary and meaningless, doctors tend to call these things “self-injurious behaviors” or “SIBs” rather than “self-harm”, and treat them as a behavior that autistic people need to be trained out of, rather than an indication that autistic people who do them are depressed or emotionally overwhelmed.

Autistic “SIBs” do often come from emotions– anxiety, stress, etc. But the popular conception of self-harm doesn’t really fit SIBs, either. This is something that I’ve struggled to understand about myself. I did things that certainly looked like self-harm, but I felt very strongly that they didn’t fit into what I was told self-harm was. I wasn’t depressed. I wasn’t suicidal. I wasn’t self-hating. I wasn’t particularly filled with any negative emotion. But I was pretty sure that if I said any of those things, people would tell me I was deep in denial at best. I felt that I had to stop doing anything remotely self-harming, not because it was actually bad for me, but because it upset other people and there was no way I could change their minds.

Reading this and this put everything into place for me. I don’t self-harm, I have SIBs. I hurt myself in an autistic way, not a depressed way.

What does that actually mean, in practice? Most of my self-harm has been in situations that were overwhelming not emotionally, but cognitively, and in which I couldn’t just give up and stop trying to think or to process what was happening. Usually this happened at school. “Let’s split up into small groups and work on these problems” led to so many people talking at once that I couldn’t think, which led to me scratching my arms with my fingernails under the desk.

If I had to put an emotion word to it, it would be frustration. I knew I could do the work that was in front of me if I weren’t so distracted, and I was trying to make myself focus. I self-harmed for the same reasons that you press the buttons extra-hard when your computer isn’t working, for the same reasons that you clench your teeth and hold your breath while trying to lift something heavy. I was trying very hard to make my body and mind do something that they aren’t good at doing.

If you want to read other perspectives on this, this post (which I also linked to above) has a collection of statements from autistic people about personal experiences with self-harm.

11/18: Echolalia

Echolalia is a long word for a simple thing: repeating words or phrases you’veread or heard. Echolalia can be a stim— repeating words because it helps you focus, or just because they’re fun to say— but it can also be communication. For an autistic person who has a lot of trouble with language, it can be easier to repeat other people’s phrases than to put things into their own words. Some autistic people use echolalia only rarely, while some speak in echolalia more often than in their own words.

Here’s Amythest Schaber’s video about echolalia, and a post by Julia Bascom about using echolalia as communication.

This is another thing that I do, but mostly only in private. I do both the stimming-for-fun kind of echolalia and the communicative kind. My most recent fun echolalia is an increasingly long series of nicknames for my pets— many of them rhyming— simply because they’re fun to say.

I don’t generally use echolalia to communicate in everyday conversations, but it’s a big part of the way I think. I often find myself using short quotes or phrases that seem to me to perfectly encapsulate larger ideas. I’ve learned through a lot of embarrassment and disappointment that these meanings don’t really carry to other people, even if they know the source material and remember the quote. So I keep them to myself, for the most part, but they are still part of how I think.

I remember how excited I was when I realized that Tumblr tags were a perfect excuse to use short phrases to refer to much larger ideas. Now, a number of my tags are essentially echolalia.

10/18: Stimming

One of the biggest concerns of parents, the biggest focuses of therapy and the biggest points of contention between autistic people and medical professionals, is variously called “stereotyped movements”, “self-stimulation” or just “stimming”.

Outside the domain of psychologists, people call it fidgeting.

Autistic people tend to fidget a lot, and in ways that are unusual or socially unacceptable (although we may also do common “normal” fidgets like nail biting, tapping our feet, playing with our hair, etc.) Medical professionals used to believe that autistic people’s stimming was involuntary, or something like the tics involved in Tourette’s Syndrome. Because of this, a lot of autism treatments have focused on “curing” stimming. Instead of viewing stimming as the visible sign of something going on inside our minds, many medical professionals thought that autistic people’s strange behaviors were meaningless and that we could simply be trained out of doing them. Some even considered behaviors to be the entiretly of autism, and thought that getting an autistic person to behave normally would mean they were no longer autistic.

(I put this in past tense, but these views haven’t entirely gone away. Although there is a consensus nowadays that autism is some kind of physical difference in the brain, which probably can’t be changed or cured, plenty of doctors still want to treat autistic people by training us to act in a more “correct” or “normal” way.)

But stimming is not an involuntary muscle twitch, nor is it an uncontrollable urge that makes us do things we don’t want to do. It is not a meaningless behavior. It is a natural part of our body language, an expression of our emotions, and a way of coping with stress.

If these sound like the same reasons that anyone fidgets—they are. Autistic stimming is not fundamentally different from anyone else’s fidgeting. We just do it more, and sometimes in different ways. (And people with other disabilities or mental illnesses, like anxiety and ADHD, can also fidget more than the average person.) For more information about this, I recommend this video by Amythest Schaber, and this post about stimming and executive function by Cynthia Kim.

Personally, I stim a lot, although it isn’t necessarily obvious to someone watching me. Since I wasn’t diagnosed as a child, I was never explicitly told that stimming was bad, but being teased and treated as weird was more than enough to get the message across. I have some specific stims that I avoid in public but do when I’m alone or around people I know well, like rocking back and forth. I try not to stim too obviously in public in general, although sometimes I don’t realize what I’m doing right away. It’s like reading something funny in a library and accidentally laughing out loud, even though you know you need to be quiet. It’s not a matter of resisting a desire to do something, but of noticing something my body does naturally and then making myself stop.

I pretty much can’t completely stop stimming, though, especially not while I’m trying to think. Almost any time I have a face-to-face conversation, I’m stimming in some way— rubbing my fingers together, fiddling with my jewelry, clothes, or hair. When I’m holding still, it’s because I’m clasping my hands together tightly, or tucking them under my legs while I’m sitting down, or crossing my arms and holding on to my elbows with my hands— the pressure takes the place of movement. These things (I hope) don’t make me look too strange, and aren’t disruptive for other people, which is something I worry about. I know what it’s like to be easily distracted by small noises, so I try not to do noisy things (e.g. clicking my retractable pens over and over) in public.

9/18: Special Interests

“Highly restricted, fixated interests that are abnormal in intensity or focus” says the DSM 5. The most common term for these among autistic people and their families is “special interests.” Lots of people have hobbies; autistic people’s hobbies get special attention for two reasons: first, we often focus on them really intensely, and pursue them in unusual ways— wanting to learn everything there is to know about a topic, for instance, rather than wanting an activity to do. Second, we sometimes pick topics that other people consider obsucre, or silly, “Why would anyone be interested in that?” sort of things. Some autistic people focus on one topic for years, others may switch often or have several at once. For some reason the archetypal special interest is trains.

Julia Bascom wrote a wonderful essay about how having a special interest feels, called “The Obsessive Joy of Autism”, which you can read here.

As for me, I don’t tend to focus on one interest really intensely, but I do have a special-interest-ish way of going about a lot of my interests. I can spend hours reading though forums and user guides and wikis for my favorite computer game… instead of actually playing the game. Sometimes I read information about games I don’t own and never even intend to play, like the descriptions and vital statistics of DnD monsters. (Small evil ants. Medium-sized evil ants. Giant evil ants. The spell you can use to summon evil ants, and what level you need to be to get each size. etc. etc. etc. To me, this is a lovely, soothing progression of information.) I can also spend hours using Ravelry’s knitting pattern search function, finding the perfect pattern for the hypothetical hat or sweater I’ll probably never make. I find reading and sorting and collecting information to be soothing.

I do feel the obsessive joy that Julia Bascom talks about. I have a whole host of science and history facts that are so! cool! which I try to avoid boring people with.

That’s another autistic trait, by the way– having one all-consuming interest + having some difficulty with social interaction = “infodumping” lots of facts that are fascinating to you but not interesting to your conversational partner. I’m pretty good at controlling this urge, I think, but I definitely have it.