Tag Archives: aspergers

Recognizing Faces

Retrospective

I’m pondering recognizing faces today. Or rather, not recognizing faces.

See, I’m not so good at recognizing people by their face’s. It’s a fairly common thing in Asperger’s. It actually has a name – prosopagnosia, and I have it, if only relatively mildly. I mean, I can recognize some faces, some of the time, but really not consistently and often cannot tell people apart even if everyone else thinks those people look totally different. Case in point – remember those Lord of the Ring movies? And two of the characters were Aragorn and Boromir? I had to watch the entire trilogy through three times before I could even begin to tell them apart, and even now it’s tricky. To me, one brown-hair-and-a-goatee looks like any other brown-hair-and-a-goatee. High school was rough, let me tell you.

This actually popped to mind because I was pondering my cat. Tarball knows me quite well at this point. Probably mostly by scent, but my face seems to have some meaning for him as well. While I stop recognizing someone if they change their hair in some significant way, Tarball seems to have no trouble. I cut off all my hair a while back, and he never even blinked. I find myself wondering – does he notice at all? Does he recognize my face? If so, what about my face is it that he notices? Or is it more my scent, my posture, my voice (those being the things I myself can more consistently recognize people by)?

Then I got to wondering if he does have some form of facial recognition, what does it go by. What does he look at? When I look at faces, I never see a whole face. At least, not in the way I’ve heard it described. I see pieces. Chin, nose, cheeks, forehead, hair. I actually cannot recall whole face in my memory or visualize a face in my mind. Only pieces. I suspect I miss a lot of nuance in faces.

Sometimes I wonder what it must be like to just see a whole face. Apparently for NTs, that’s now it works – whole faces. Not pieces and parts seen a bit at a time, but just… an entire face. I feel like I am not describing this particularly well, but I doubt I can do any better given how foreign it is to me.

I’m not sure why, but it is a bit easier for me when I’m looking at a photograph of a person, rather than the person themself. Though that gets into the trickiness that pictures of the same person photographed from different angles or with different facial expressions will look like entirely different people to me. That’s a little weird.

A face only becomes even vaguely unified once I get to know a person, or at least once I see them enough for their features to become distinctly *them* rather than just a collection of features that could be anyone. I still don’t see whole faces exactly, but I can recognize them against other people with similar features, and their pictures all look like them.

This is another post without much point. I just felt like exploring the concept, since my cat seems to have no troubles here and it popped to mind. Faces are just such strange, tricky things. It’s hard to know what to make of them.

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Science, Culture, and Differences

This is actually two or three different topics that I just can’t seem to separate enough to make them into separate posts. They’re all small enough, though, that I think one post going over the whole thing won’t be too overwhelming. However, I confess, I fear that my thoughts are still too jumbled and mashed up to be able to make a clear and coherent post. I’m going to try anyway. We’ll see how it goes.

Let’s start with culture. Autism culture. Specifically, the “autism is autism” part of the culture. By that I mean, the idea that all the different “types” of autism spectrum disorders are, in the end, simply autism. Classic autism, Asperger’s syndrome, PDD-NOS, are all autism and that’s all. Not everyone agrees with it for a wide variety of reasons, but it’s common enough to be a thing. Many people are quite passionate about it and quite firm in their “autism is autism” stance.

Next, there’s the DSM 5. As it quite well known by now, it merged various similar-but-distinct diagnoses into one – Autism Spectrum Disorder. I’ve been asked what I think of this change, and honestly, I’m not sure what to think. It certainly fits with the ‘autism is autism’ culture we have going on, but does it fit with the science? Well…. there is no science. Not really. Not yet.

Right now, while we generally understand autism disorders to be neurological in nature, we don’t really understand what is actually happening. We barely have any idea what the differences are, and the research is very new. Diagnosing autism relies entirely on behavioral markers. I really don’t want this post to get too far into the debate about whether or not they are “really” the same or different. Mostly, it seems a little of both. There are differences, there are similarities, and it all centers around a developmental delay in social processing and understanding. So there’s that. Are the differences distinct, above and beyond the similarities? We don’t know.

Then there’s the science. It’s just getting started, and admittedly, I find it fascinating. I rather wish I could participate in a study where they looked at my brain using any number of things (MRI, EEG, whatever else) to see how my brain is distinct, what makes it an ASD brain rather than a neurotypical or allistic brain. That would be so cool.

Anyway, I was going to talk a bit about a couple of studies that I’ve heard of. For instance, there was an EEG study. It was small, too small to really form strong conclusions or change how we diagnose or anything. But it was interesting enough that scientists want to do more. To put it briefly (as I understand it) scientists used an EEG machine to look at the brains of autistic children, children with Asperger’s, and neurotypical children, and compared the results. The results were, basically, that Asperger’s and autism brains are more like each other than like neurotypical brains, but that the two are still sufficiently distinct as to be noticeably different on the EEG.

There was also a small, exploratory study that looked at a small number of autism spectrum brains. To quote the wired article, “Now, a new study adds an intriguing, unexpected, and sure-to-be controversial finding to the mix: It suggests the brains of children with autism contain small patches where the normally ordered arrangement of neurons in the cerebral cortex is disrupted.” This study was very small – it involved post-mortem (which is really sad, right there) brain tissue from 22 children, 11 at varying points on the autism spectrum, and 11 as controls. The conclusion was, basically, that autism brains are distinctly different from neurotypical brains, regardless of “which” autism it was. They were also different from each other, in ways that basically means more study is needed.

I don’t really know what this all means. It’s all very interesting, and I like looking at the neurology, even if I don’t really understand it. I worry about the science of autism and the culture of autism coming into conflict if the scientific results fail to support the culture, just as much as I worry that the science of autism will careen off into an icky, “lets get rid of autism” direction. On both ends, I worry that an insistence on unity OR an insistence on distinct categories will lead us towards failing to see the individual needs of each person. People who are against “autism is autism” will point out that people on varying points of the spectrum need different types of help. This is often true. However, even people within the various categories often need different types or different intensities of help. When it comes to support, it all has to be individualized. When it comes to the science… well, we just really need to know more.

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This or That

So over on the Asperger’s Support Network page on facebook, someone asked a question:

How do you determine what behavior is due to Aspergers and what is not?

Turns out I wanted to answer this question in a blog post, as a comment on a facebook post just wasn’t good enough for me. Actually, the way I first read this question was “what behaviors are due to Aspergers?”

My answer to that one is “all of them and none of them.”

This question worries me. They are always presented without context, unless the anonymous asker included context in their question – which they usually don’t. This one, of course, also did not. So I don’t know who asked or why they want to know or if there is any particular behavior they are worried about. If there is, obviously I am not sufficiently informed to answer.

However, as to behaviors in general… well, here’s the thing. Autism is pervasive. I can’t really put my different behaviors into neat little piles and say “these are the autism behaviors” any more than I can have “female behaviors.” My behaviors are simply my behaviors. Asperger’s syndrome affects everything I do, all the time.

What I really want to say to questions like this is – don’t. What is the purpose of saying “this behavior is due to Aspergers?” What are you hoping to accomplish? Ultimately, I cannot imagine a good reason to do this, and I can think a whole lot of reasons not to.

Before I go rambling away more, I just want to make my point really clear – never, ever, write off a behavior as simply “part of autism.” Never.

I imagine this topic has been coming up a lot since that article about Peter Lanza (Adam Lanza’s father) came out. The writer spent quite some time interviewing Peter Lanza, and wrote a lengthy, rather sad, article about his perspective. There was one bit that is particularly relevant here:

Peter and Nancy were confident enough in the Asperger’s diagnosis that they didn’t look for other explanations for Adam’s behavior. In that sense, Asperger’s may have distracted them from whatever else was amiss.

As I’ve said really quite often by now, I am a fan of labels. Having words empowers me, gives me direction and coherence that I might otherwise lack. The word “Asperger’s” drastically improved my life. Knowing what’s going on, being able to have a handle on it, having a WORD, that was amazing to me. IS amazing to me. Yet sometimes people respond to labels in troubling ways. Ways that show a lack of insight, of this “theory of mind” thing that allistic people like to criticize us about so much.

Sometimes, some people will see a label and just stop there. An anomalous behavior will be attributed to the label, they will simply say “well, people with [label] just do that sometimes.” and not look further. It’s why Landon Bryce of Thautcast fears “wandering” becoming a diagnosis. Because yes, sometimes autistic children wander, but it’s important to look at why. It’s important to not just write it off as something autistic children do. Sometimes the wandering is, in fact, a matter of self-protection. Of getting away from painful circumstances, whether those circumstances consist of a painful noise, or sensory overload, or gay reparative therapy, or abuse. If we get to the label and stop there, we can’t find out if there’s more there.

A diary of a mom wrote about the same issue. About a child who banged his head in a desperate attempt to cope with constant pain, and no one looked into it because “autistic children do that.”

If a child withdraws, you can’t say “that’s just autism.”

If a child is hurting themself, you can’t say “that’s just autism.”

If a child wanders off, you can’t say “that’s just autism.”

It is SO IMPORTANT to look at why. And yeah, maybe sometimes there won’t be much of a why. I regularly get distracted by shiny things, to the point that Nee tries to keep me in sight when we’re out and about, because he’s never sure when I’ll suddenly feel an intense need to study some random thing. Yeah, it happens. But it also happens that sometimes people need to get away from something that hurts them. Sometimes an autistic child may not be able to say “that hurts!” in any way other than getting away from it. I am quite sure the same is true for some autistic adults. We don’t always have words, and when we do we can’t always use them in the way people think we should.

NEVER stop at the label. NEVER say “that’s just Asperger’s.”

Oh, and please don’t try to split me apart into “asperger’s parts” and “non-asperger’s parts.” Asperger’s is throughout me. I may not be a coherent whole, but it isn’t Asperger’s that divides me.

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How to talk to me

At first I thought about making a “how to talk to introverts” post. Or maybe a “how to talk to anxious people” post, or a “how to talk to aspies” post. However, I really don’t think I’m qualified to speak on behalf of entire groups like that. I may be part of all of those groups but I’m not their spokesperson, and even within those groups, different things will work for different people. So instead, here’s a “how to talk to me” post.

Many, if not all, of the points I make will apply to lots of other people besides me, so this isn’t entirely self serving. They may apply to introverts, or to the socially anxious, or to autistic people, or any combination of the above. Ultimately, your best bet is to get to know people as individuals and figure out what works for them.

So, onwards to what works for me.

One of the biggest is to give me time to process and answer. If I am putting lots of energy into socializing, I can usually process quickly enough that people don’t notice much of a lag. However, if I am focused on something else or not pushing myself to process at top speed, it will take me some time to process what you said, come up with a response, and put that response into words that make sense. Importantly, I really need you to stop talking while I’m working on that. I cannot listen to someone and process my response at the same time, so every time you start talking again I need to begin the process all over again.

Really, any time you are wanting a response from me, it is important to stop talking in order to get it. I’ve noticed that sometimes people seem to just keep talking and talking and talking and just won’t stop, and I’m politely waiting for them to stop talking so that I can respond and it never seems to happen. Eventually I will tune them out (which feels very rude and I don’t like doing it) so that I can come up with a response, and then interrupt to say something. What’s always so odd is they respond as though that is what they were waiting for me to do.

I don’t like socializing this way. Let’s take turns, and please give me the time and space I need. If you want me to be at all relaxed around you, this is even more important. The more relaxed I am, the slower I am to process and respond (Nee would probably attest to that one). So I like it when people are ok with that.

Moving on – this goes against the usual tips I see about socializing, but please don’t touch me without permission. Not even a handshake. I will be far more comfortable with you if you keep your hands to yourself and refrain from thrusting body parts in my direction with the expectation of grabbing one of my body parts. Eventually I might feel comfortable enough with you to engage in social touch, but please let it be on my terms. Beginning an interaction with a handshake guarantees that I will feel tense and icky for it.

Don’t try to force eye contact. I might look at your face when we talk, but I will never even glance at your eyes. Even looking at faces is draining and I might more look in your vague, general direction. However, that is draining too, so I might just look away from you. It depends on how much energy I have, and how I feel it’s best to use that energy. I don’t need to look at your in order to listen to you. On the contrary, oftentimes I listen much better when I’m looking away, and don’t need to process lots of visual information at the same time that I’m processing all that auditory information. Respect that.

Mostly what I need is for you to respect my differences. Don’t try to force me to interact like everyone else thinking that it qualifies as “improvement” because it does not. Improvement is being able to interact with people without being unduly stressed or exhausted. Allowing me to be the way I am is the best way to accomplish that goal.

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Bound by my word

I’ve noticed that there are some ways that I seem to use my words differently than other people. I am literal, I am absolute, I tend to take things seriously. This impacts my life in an incredibly large number of ways, and one of those ways is in words and language and how I treat what I say.

Specifically, I am bound by my word in a way that I’ve noticed other people are not. I was having some goofy conversation with a friend of mine a while back, and he was doing something physically goofy as well. It was all very silly. At one point he said that he was done doing the goofy thing for the night, but then he did it more a few minutes later. And my first response was to think that he lied. It was not a big deal or anything, but still. A lie. But then he said that no no, it was not a lie. He had simply changed his mind, which is apparently a totally valid thing to do. I am trying very hard to respect that, and acknowledge that language is apparently fuzzy for other people.

However, it does not work that way for me. Language is rarely fuzzy (though sometimes language is unclear, and it bothers me when it is), and I mean what I say. Or at least, I had bloody well better mean what I say, because I am bound by it. I don’t need to say “I promise” or “I give you my word” in order to set my word more firmly and make it solid. It is simply always like that, by default. If I say that I am done with something for the night, then I am bound by that. My options are to be done for the night, or to make myself a liar. Changing my mind simply is not an option.

I mean, it could be an option. But it has to be put into the words I say. I would have to say “I think I am done with Thing” or “I am probably done with Thing” or maybe “unless something changes, I am done with Thing.” If I wrap my language around my decision not being certain, then I get to change my mind and my decision can be less-than-solid. If I don’t do that, though, then that’s it. If I do not make my words say there is an option to change my mind, then the option is not there. If I do not put an end-time on Thing, then there is no end-time. If I say “I am done with Thing” then I am done forever, because I did not give myself the option to change my mind, nor did I stipulate end conditions. Therefore there are no end conditions and instead it lasts forever.

I’ve started idly speculating where this might be coming from. Some of it might be my Christian upbringing and that bit from the Sermon on the Mount when Jesus says “But I say to you, make no oath at all, either by heaven, for it is the throne of God, or by the earth, for it is the footstool of His feet, or by Jerusalem, for it is THE CITY OF THE GREAT KING. Nor shall you make an oath by your head, for you cannot make one hair white or black. But let your statement be, ‘Yes, yes’ or ‘No, no’; anything beyond these is of evil.” (Matthew 5: 34-37) That was one of the verses I distinctly remember from growing up, and despite my dramatically changed beliefs, it may have stuck with me.

It also might be due to Aspergers and how it reflects in my thinking. As I mentioned before, I am literal. I am absolute. I do not think in shades of gray and I never have. So viewing what I say in absolute, inflexible terms is really only natural. There is also the fact that I have a history of learning to be very careful with what I say simply due to necessity. People who do not have this history may not regularly watch their words particularly closely. Or perhaps the Christian upbringing and my aspie self and history collided, causing some extreme reactions in some of what I say and do.

It is hard for me to remember that not everyone works this way. That people can made a declarative statement with no explicitly stated way out, and still change their minds. That this does not make them liars. I am trying, though, and working on respecting other people’s fuzzy use of language.

Nonetheless, that effort to understand fuzzy language does not extend to myself. Trying to understand that other people are not bound by their word the way I am does not actually change the fact that I am bound by what I say. I wonder if someday this will change, but right now it seems unlikely.

 

Update: Ok, so I wrote this back in August and am only now posting it. That’s sort of how it goes with this blog. However, in that time frame, something changed! Specifically,  I’d added a “not in my right mind” clause for if I make a bad decision at a time when I can reasonably say that my brain is malfunctioning. Then, I’m not bound by it. I haven’t actually managed to test this yet, but it seems to have wormed it’s way into my thinking.

I am also finding myself confronting the fact that in this case, my rigidity is not doing me any favors, and there are probably more circumstances where I need to be able to change my mind. On a side note, it feels really weird to type the phrase “change my mind.”

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Asperger’s and Religion

Quite a while ago a blogger I like to read sometimes talked a bit about the intersection of religion and the autism spectrum. He ended it with an appeal to his readers to talk about how religion and ASDs intersected for them. He probably meant in the comments, but I thought I might make a blog post out of it. Partly because I am sooo not his target audience (as he appears to be primarily talking to Christians) and partly because I wasn’t sure I could sum it up enough for it to make a good comment. Since then it’s been burbling around in the back of my head, and I think I’m finally ready to talk about it. Fair warning: there’s going to be a lot of just talking about religion here. It only gets intersectional at the end.

So I want to talk about the use of religion. What is it for? Why be religious? There seem to be two dominant answers to that question – to have a sense of morality, and to explain things that otherwise cannot be explained. I grew up christian, and both of those reasons for religion were drilled into me quite firmly. To me, they seemed to be totally logical and reasonable, even more so since I also grew up a tad anti-science. However, eventually my beliefs crumbled and many of the things I was taught no longer made sense to me. I was no longer able to accept what I was told on face value.

This loss of my christian beliefs had a number of different effects. One was that I realized that even the most deeply held belief can change. End result – my religious beliefs are now fluid. They have a tendency to change over time and I am very comfortable with that. Another effect was that during this transitional period, religion was suddenly no longer able to be my source of morality, or my answer to life’s questions or science’s confusing parts. So what happens then?

Well, I became ok with that. I realized that I did not actually need religion in order to have a sense of right and wrong. My sense of right and wrong comes largely from myself, though I grudgingly admit that the society in which I live has an impact as well. Religion simply is not necessary. In fact, it has gotten to the point that the idea of viewing morality as commands from a god or otherwise entirely external to oneself kind of skeeves me out.

Also, science is awesome. No, scientists do not have all the answers, but the methodology of looking is pretty nifty. Nor am I interested in having a God(s) of the Gaps. I don’t view gods as scientifically necessary and I am ok with that.

What this basically means is that the two primary reasons people seem to want religion in their lives simply don’t apply to me. My gods do not hand down rules to live by in order to create my sense of right and wrong, nor do they challenge science in any way.

So that brings us to the question – why do I have religion?

First and foremost, religion is, for me, something to experience. The experience of rituals, of standing in the rain, of whatever things I do in the practice of my beliefs. It’s about how I feel during those experiences, and the general sense that they are a positive aspect of my life. After I described my religion to someone once, they called it “experiential religion” and I really like that. I think it describes it well.

Beyond that religion is one of my tools for self improvement. This is where it gets a bit intersectional. I highly value the general process of improving myself and growing and stretching in various ways. Also, due to being on the autism spectrum, I am developmentally behind. I just am. So in some ways, my whole life can feel like I’m just running to catch up, only I never actually will. Religion helps me keep going, and it challenges me to be better. It was religion that finally forced me to add nuance and shades of gray to my strict black-and-white worldview. My religion (among other things) tells me that I am not allowed to stagnate. The fluid nature of my beliefs helps me to be more fluid in general, which is useful as I tend to want to be rigid.

Religion and Aspergers has also collided in another way for me – the concept of ‘self’ as ‘soul.’ I grew up with the idea that people have souls, and that our souls are, essentially, ourselves. Our soul is where our personality and identity live, and they are separate and apart from our bodies. However, autism spectrum disorders are, by increasing evidence, neurological. It shows in the very structure and pathways of our brains. There is also an increasing culture that autism is identity – that you cannot separate the “me” from the autism. Which calls into question this ‘self as something separate from the body’ thing. I haven’t figured this one out yet, but I have found my beliefs changing – less transcendent and more immanent.

On a tangential note, sometimes I wonder if this soul problem is one of the reasons why some people (parents) really want to see autism as something separate from personality or identity. That there is a person “trapped behind” the autism or something. Because facing the idea that something as base and physical as neurology can directly impact who we are might simply be too much.

Overall, my religion and my neurology certainly do intersect. I imagine they did when I was a Christian as well, but it’s harder for me to dig out exactly how so. Nevertheless, being on the autism spectrum is pervasive, and it has an impact on everything – including how I experience religion.

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Temple Grandin

I recently went to a talk by Temple Grandin while she was in my city. There seem to be many divided opinions about her, but I found the talk interesting enough to talk a bit about my impressions of her.

I have seen some people accuse her of being ablist, because of her focus on getting autistic people working. I am not entirely sure where I stand on this issue, but my sympathies are leaning towards Temple, despite my own lack of a job. Her attitude is, basically, that being on the autism spectrum is not a good enough reason to not work. The basic stance she seems to take on the matter is that a person should find A Thing that they can do, and make a job or career out of doing that Thing. Yes, sometimes it will be boring and just work, but other times it will be awesome, and the more you do it the more likely it will be that you will get to do the awesome.

She talked a little bit about the need for accommodations, though I would have liked more focus on how to get those accommodations in when dealing with bosses who think you are simply being unreasonable, or in the face of disbelief or uncooperativeness. As far as I can tell, she definitely believes that accommodations should happen to make it possible to work, but she did not say anything about how to actually get them.

Interestingly (to me), she rather explicitly stated that simply opting out of office politics or work social events or such things is a definite option for those of us who simply cannot handle it. That we should be able to do Our Thing, and not worry so much about chatting by the water cooler. In theory, I definitely agree with her. However, I would have liked to see an acknowledgement of the impact refraining from politics and socializing can have on a person’s career, and some talk on how to deal with that.

I was off in a side room for this talk (which, by the way, was awesome. I am so glad that divided people up like that, so I had to deal with a minimum of crowds of people), but if I had been in the main room she was in and had processed quickly enough to come up with questions on the spot, I think there are some questions I would have wanted to ask her:

Having a job consisting of The Thing that I do is a great thought, but how can I do that while dealing with a world in which jobs are increasingly generalized, asking people to do a wide variety of tasks? Specialization seems to be becoming less and less of a thing, at least in terms of hiring.

What is the best way to ask for accommodations, especially if one is dealing with unsympathetic bosses or coworkers?

How should we navigate opting out of socialization and office politics in a world that is demanding so much networking and socialization in jobs?

Moving back into my own impressions, she also stressed the importance of getting children talking as early as possible. I’m honestly not sure I agree with that one. I definitely believe finding a way for children to communicate as early as possible is important, and I can see the argument that talking is the method of communication that most people are familiar and comfortable with, but I think things like tablets or typing  or picture boards and such are also viable options. I am inclined to say that speech should be our first choice, but it should not be the only option. However, while I see people accuse Grandin of focusing on speech to the exclusion of other things, when I looked at her website to find verification, I instead found encouragement to find some way, any way, to communicate. “If a non-verbal child is frustrated because he/she cannot communicate, he/she should be given a means to communicate, such as a picture board or picture exchange.  There are many new apps available for iPads and other tablets for communication.” So perhaps I took her encouragement to speech in her talk too literally.

More generally, she used gestures while speaking far more than I was expecting. That actually threw me for a loop at first. She quite direct in how she spoke, but she still spoke with quite a lot of humor. I noticed that she touched and smoothed her hair rather often, and she also frequently touched her face around her eyes. I found myself wondering if those gestures were a stim for her.

I also took note of a few points of how she spoke. When I watched Temple Grandin, the movie, with commentary on I noticed that her speech sounded rather stilted and almost a little forced. Her speech was smoother in her talk than I remembered from the movie. From both the movie and from the talk I noticed that Temple seems to have various phrases and sentences that she says the exact same way, word for word, every time she says them. I realized that I am accustomed to people finding new ways to say the same things, but not Temple. It gave me the impression that she makes some limited use of scripts in her formulation of sentences. Finally, when she answered people’s questions, it seemed to me that she often did not actually answer the question that had been asked, but answered something related to the topic that had been asked about. That lead me to speculate if it might be related to her extreme visual-based thinking, and if the answers she gave were more about the images the questions put in her head, rather than about the literal interpretation of the words said. Similarly, I noticed that sometimes when answering questions her answers drifted a bit, in an associative kind of way.

Overall, I found the talk interesting and I am very glad I went. My general impressions are positive, but I do wish she spoke in more depth about some things, with more acknowledgement of how much of the world I live in does not seem open to her solutions and some talk about how to deal with that, and the intersections between autism and other issues.. Still, I think I’d be interested in going to another of her talks if she’s ever in my city again.

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Communication and Comprehension

If you can’t explain it simply, you don’t understand it well enough.   -Albert Einstein

The above is a quote commonly attributed to Einstein. Like many quotations, it’s challenging to find a primary source to reference. However, I’m really more interested in the line itself, the fact that many people seem to respect it, and the underlying assumptions that go along with it. A friend of mine recently mentioned the quote to me; it got some part of my brain bubbling over it, and eventually I realized that I was having thoughts and feels about it. So, of course, I share those thoughts with you now. I’m a blogger, what else would I do?

First of all, it bugs me. It took me a while to process and figure out why it bugged me, but bug me it did. Eventually, though, I realized something. This quote is based on the idea that there is a direct correlation between one’s ability to communicate, and one’s ability to think or understand.

Oh dear.

I’m going to start with words. While the attitude is slowly changing in some corners, there is still a strong idea that words are required in order to think – and, by extension, to understand. It’s an assumption perpetuated by word-thinkers (who happen to be fairly dominant in society), who have apparently decided that since they think in words, everyone must think in words. And since they cannot envision a method of thinking that does not involve words, clearly all thoughts are word-thoughts.

So if we extend it just a bit more, maybe the idea is that if we have a thought, and it is in the form of words because all thoughts are words, then all that is required to communicate that thought is to simply say those words. For all I know, this method works really well for people who think primarily (or exclusively) in words. Since I only occasionally think in words, I wouldn’t know.

When the idea for this blog topic bubbled out of the recesses of my brainspace, I tried to share it with Nee. I didn’t have anything to write it down with at the time and I didn’t want to forget, so I was hoping getting it into two brains would make it easier to remember. The idea seemed pretty clear in my head. I had a pretty good idea of what I believed, what I wanted to say, and a rough outline of how I wanted to say it. Actually verbalizing it, though, was rough. Like whoa. I stumbled over my words, had lots of partial sentences, and was having a really hard time getting the concept out in a word way. Why? Because the thoughts were not in word form in my head. I was needing to translate them from their conceptual form into talking form, and quite frankly, I’m not very good at that. This occurred only a few hours ago (from the time of writing this) so I don’t think it’s that I didn’t really understand it before and just had a lot of time to clarify the thought. It’s that the thought was not in word form, so saying it out loud was not working very well. Also, my brain has trouble with that sometimes.

Now, for me this is only an inconvenience. I write fairly easily, and given time I can usually work out words in talking form too. However, not everyone is verbal. Not everyone can speak, and not everyone can communicate in words at all. If we assume that thoughts must be in the form of words, and if we are faced with a person who has no words, then the only logical conclusion is that they also have no thoughts.

That is a terrible conclusion.

Those who speak already have significant privilege over those who do not speak. Our response to that privilege should not be turning it into a way to deny the intelligence of those who do not speak or do not have words. Happily, there is more and more attention being paid to examples of people who did not have words for some portion of their lives, eventually found words, and have then been able to tell the world that yes, thoughts existed before words. A particularly famous example is Temple Grandin, and her explanation of how she thinks in pictures. More and more people are speaking out about having thoughts that are not in the form of words. Just because I sometimes have difficulty translating my thoughts into words, that does not mean those thoughts are any less real than someone else’s word-thoughts.

Speaking of which, this is not just about words. This is about communication, and means of communication, and the fact that some of us have limited communication. Not everyone on the autism spectrum speaks. Not everyone on the autism spectrum types. Some people can only communicate via picture boards or electronic devices that help to communicate basic needs and such things. Sometimes a person’s ability to communicate is very limited, for instance, a person who communicates with a picture board would probably be unable to communicate some types of thoughts and concepts. Assuming that a person’s ability to communicate directly reflects their ability to understand an idea or a concept is to say that these people never have thoughts beyond “I’m hungry” or “I need to use the bathroom” or whatever is possible using whatever communication devices that have been provided. This is not an ok thing to assume. Frequently, it is not an accurate thing to assume. This is why we push to presume confidence. This is (one of the reasons) why I talk about how what you see on the outside does not necessarily reflect what is happening on the inside.

These assumptions are harmful. Casually tossing around such quotes as though the reflect some constant truth is harmful. Intended or not, it’s ablist. I want to see people approach these assumptions more thoughtfully, with more care about what’s implied, and the impact it might have on people who have more severe disabilities.

Because thoughts are not always words. And our ability to communicate our thoughts does not necessarily reflect on our level of comprehension.

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Anxiety

If only panic always had a convenient button.

 

Along with being on the autism spectrum, I deal with both depression and anxiety.

I have found that depression mostly feels like a void. Depression comes in different flavors (sads and nothings being the two I hear of most often), but regardless of which flavor I am feeling at the time, it always feels like a void. Like some part of myself has just quietly ceased to exist and now there’s just a sucking void where it used to be, trying to pull the rest of me in.

Anxiety, on the other hand, feels more like an attack. I feel it almost like a presence, lodged somewhere in my chest and causing trouble. When it gets bad I sort of liken it to a giant bird claw, wrapped around or embedded in my chest, squeezing and stabbing and making it so I can’t breathe.

I can’t really objectively rate how bad my anxiety is. I was going to say it’s not that bad, but then I realized that there’s a good chance that anxiety has been a huge barrier in keeping me not-so-terribly functional, in certain socially expected ways. Sometimes I wonder if it would be better if I got on proper meds to deal with it. Or, well, I’m sure it would be better. Maybe it’s more that I wonder how much better it could get, and what that would look like. Hard to say, really.

Anyway. One thing about anxiety that I want to talk about is that it does not always look the way people seem to think it should look. I have found that if I talk about panic attacks, people will immediately assume that means screaming and flailing and running mindlessly down the street or something. Of course, I don’t know much about what panic attacks look like in other people so maybe that assumption is often true and I just don’t know it. However, it is really not true for me. I have, on more than one occasion, had a panic attack whilst astride a horse, during a horseback riding lesson.

Now, panicking while on a horse is really not the best thing to be doing. Horses are very sensitive to their riders, and pick up on even a little bit of tension. This isn’t a huge thing on a therapy horse, or even a horse for beginners. Therapy horses are chosen for being very very calm, and really not caring a whole lot if their rider is tense or moving in odd ways.

However, I hardly ever ride therapy horses anymore. I ride horses that are supposed to be very sensitive to what you’re doing, so that they will respond to subtle commands. A panic attack on one of these horses can be maybe not such a good thing. However, I panic quietly. Sufficiently quietly that my riding instructor, who is a special ed teacher, will not know that I’m having a panic attack unless I tell her. The horses I have been on, while certainly knowing that something was up, were always willing to let me take a break without causing trouble.

Because my panic attacks don’t look the way people seem to think panic attacks should.

I have found that people interpret my anxiety in all sorts of interesting ways. It’s fairly well known that shyness can look like snobbiness to people who don’t know what’s going on. What seems to be less known is that anxiety can also look like anger. When I was young, there were occasional incidents where I was very very scared. Not of anything in particular, just of lights or noise or having trouble processing what was happening around me – that sort of thing. Sometimes afterwards, people would tell me that I was angry. I, apparently, looked angry, sounded angry, and acted angry. This was very frustrating for me, because if I tried to explain that no, I’m not angry, I’m scared, the people around me would simply dismiss what I was saying and insist that no, it was anger. Sometimes people assumed that I was lying for some reason, and sometimes people assumed that I must not be self-aware enough to know what I was feeling.

The general assumption was clearly that whatever it looks like I’m feeling must reflect what I am actually feeling. Except that what you see is not always what you get, and what you see on my face does not necessarily reflect what’s going on inside. And anxiety does not necessarily look the way people expect it to.

Do you get anxiety? Does it look like what you’d expect to see on TV?

 

 

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What you see is not necessarily what you get

There is something that I really want to see more people accept. This is probably true in much broader contexts than autism, but autism is the place where I feel it the most.

That being – what you see when you look at me and what is actually going on do not necessarily line up. People assume that whatever is going on in one’s head will automatically show on one’s face. That it just *happens,* all on it’s own. Which means that if a person has a blank facial expression, there must not be anything going on in their head.

It’s an easy conclusion to reach. It’s easy to assume this, and there may be plenty of circumstances where it’s true. There are, however, also plenty of circumstances where it is not true.

For instance, when I am particularly focused on something, my face tends to go blank. I knew that my face tended to go a bit slack when I was focusing, but up until recently I was not aware of the extent of this tendency. Not too long ago my SO took some brief video of me during my riding lesson. During the time that he was doing so, I was focused and concentrating and actually working quite hard. As it turns out, I did not look that way at all.

I imagine that when people think about someone who is really focused or concentrating on something, they picture something like this:

focused

I, however, look different. I looked blank. Completely blank. I mean, my jaw was slack and everything. Keeping expressions on my face takes a certain constant amount of attention. Usually it’s a small enough amount of attention that I don’t actually have to worry about it. However, when I am strongly focused or really tired, my facial expressions just seem to fall off. I imagine it happens in more contexts than just riding, too.

Sometimes people treat me as though I am, shall we say, not so smart. There are any number of reasons why they might, including that being just their default way of interacting with people, but I imagine part of it is that slack-jawed, empty looking stare I can get sometimes. And when people see me with that blank face, they assume that my mind is equally blank, when, in fact, it’s the other way around.

I’ve had similar “what you see is not what is happening” incidents in my life. For instance, when doing things like card games, I like to sit and visualize moving the cards around before making a move, so that I can get an idea of which moves will work and which moves will not. If someone happens to be watching me, all they will see is me just sitting and staring motionless at the screen. I have had people try to point out moves to me, thinking that I must not be seeing them. What I am doing does not show, but that does not mean that I am doing nothing.

I know that keeping this sort of thing in mind in the moment can be challenging. This is one (of many) reasons why autism advocates say to assume competence. We don’t always look or act the way you expect intelligent people to look or act, but that does not make up stupid. I often listen best by looking away and having a small fidget or stim with my hands. Other autistic people may listen best by flapping their hands or by humming or otherwise doing things that do not look like what people expect listening to look like. Forcing me to look like I’m listening will only result in poorer listening from me.

Instead, I would rather people accept those of us on the autism spectrum as we are, even if we don’t look or act the way you think we “should.”

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