On AutismDiva’s blog, in response to a discussion of what I wrote in my previous entry, someone posted a response saying that Douglas Biklen’s Autism and the Myth of the Person Alone contradicted this notion of autistic people needing a lot of time alone. I’ve read Autism and the Myth of the Person Alone and I don’t think that’s what it was saying. I think it was trying to describe something like the following:
In assorted institutions, any interest in other people that I showed was invisible to the average non-autistic person. This was not because I was particularly trying to hide it, but because my brain did not respond to interest in people by generating a whole set of body movements that most people would use to convey that interest. In fact it did not attempt to convey that interest at all.
Thus, a lot of time passed in which I was very interested in the people around me, often watching what they were doing and perceiving myself to be interacting with them. However, the people outside me, seeing none of the typical body signals for this experience, described me as aloof and showing no interest in people whatsoever.
A similar misunderstanding has caused many autistic people who are quite aware of our environments and able to think clearly about people and a number of other things, to be considered totally unaware of our surroundings, probably lost in a fantasy world of our own, and certainly not able to perceive, understand, or interact with people. There is a certain socially acceptable set of physical reactions to knowledge that we are expected to show, and we do not show it in some or all circumstances. The expectation of those physical reactions, causes people to assume we don’t really understand anything, or can’t really understand anything, and are just totally isolated “in our own worlds”.
The reasons for the lack of typical reaction are several, only some of which have to do with being oblivious, and even those of us oblivious to many things are rarely as oblivious as we are thought to be.
There is a myth that autism is characterized by a kind of total mental and emotional isolation from the rest of the social world, possibly from the physical world in general, and so forth. That myth is quite often not true. That myth is the one that Douglas Biklen tackles very well in Autism and the Myth of the Person Alone.
Many autistic people find being around people exhausting. Even if we perceive what people are, even if we like people and want to spend time with them, being around people causes an enormous drain on perceptual and motor resources.
If you put me in a room with people for long enough I stop being able to understand my surroundings at all, or move at all, or both. Eventually every noise they make sends a wave of pain like lightning through my entire body. My body itself goes limp. Then it gets zapped. Every possible source of stimulation turns into a jolt, and the jolts keep going through me, but my muscles may even stop responding to those. Everything turns into excruciating pain. I turn into a quivering blob who can neither move nor understand things as basic as color, all sensation has simply become a source of pain, and then even after the pain has faded out there’s a whole lot of nothing.
This is not an exaggeration. This is what happens to me when I have to consistently process the presence of humans for days on end. The above is what happened to me when circumstances forced me and a friend (also autistic) to room with each other temporarily. (She did not fare much better.) Between living with her, and her staff coming in and out, and my staff coming in and out, I rediscovered some interesting and painful depths of overload.
Biklen himself describes this in Autism and the Myth of the Person Alone, and acknowledges that being around people can be overloading, and that aloneness can be a necessary strategy in dealing with this. He takes issue only with the extent of the aloneness that is usually assumed about us, and the idea that aloneness is truly central to what being autistic is about. I agree with him.
Being autistic is about being someone who processes information, thinks, feels, and responds in ways that are not standard. The much-discussed “social issues” are outgrowths of the way this kind of person relates to the more standard kind of person and vice versa. A need for aloneness, when it exists, is still an outgrowth of this difference.
The fact that I need to be alone a lot does not mean I do not like people. I love my friends. I have friends. I understand a lot of things about people, I perceive much more than I am able to show in the rapid interactions that are usually expected, and I am certainly not totally oblivious to people, uninterested in them, or uninterested in the world in general. When I meet a person I really click with, we can spend more time together than is good for us.
All that doesn’t mean that people are not draining and exhausting. Lots of people enjoy doing things that they could not possibly sustain all the time. I enjoy spending time with some people, but I can’t possibly sustain it. I need to be able to stop. I need to be able to do something simple and repetitive and utterly familiar. I need to crawl into a dark room and hide until my brain stops reeling and the pain subsides. I need this like I need sleep. In fact, I need it if I am to understand anything, but social things tax understanding with their complexity and their demands for response, so much that they are able to induce this need more rapidly.
Large group social events are always interesting. I remember one of the last large meetings I attended. The majority of speech sounded like running water, and the majority of sights sort of congealed into a visual mass of color and shape. I could perceive patterns around me, many of the social undercurrents in fact were starkly visible to me, but all the words and “meanings” were lost. Occasionally I would notice that someone had been waving their hands in my face or pressing their face close to mine, loudly asking whether I was okay. The sea of patterns was interesting but exhausting, I had trouble tracking all the usual things that most people would be expected to track in such circumstances, and I had to be pushed up to my room. I was certainly aware of things, but it was not the kind of awareness that is conducive to rapidly responding or getting a lot out of a social situation, at least not that social situation.
Trying to function in a situation like that, simply trying to understand and emit language for instance, or just to not start screaming and flailing or anything, is an interesting juggling act that often ends up with dropping all the balls. It requires a lot of practice, effort, and control. And being alone afterwards, and often beforehand to prepare, is essential.
Sue Rubin explains (in Autism and the Myth of the Person Alone):
As discussed previously I tend to detach myself from social situations at times where autism is in control of my capability to relate to those around me. This does not mean that I don’t enjoy socializing with my peers but at times autism will not allow me the desire to socially interact.
I would not put it exactly as she does, but she’s describing something very similar. It’s just not possible to push interaction past a certain point. This fact does not mean that we are uninterested in or totally oblivious to people. But the fact that we are not uninterested or oblivious, likewise, does not mean we don’t find people overloading or impossible some days.
People emit large amounts of complex information. They are unpredictable. They expect reactions.
My first memories of what I now know to be groups of people are memories of large teeming swirls of chaos that seemed painful and undesirable to approach. My experience of people was initially of patterns of movement and sound and smell (smell stuck the most consistently, along with movement) and patchwork visuals, that expected things of you. My experience of people can still be like that today. I can fade them into the background, less overloading, but not possible to interact with that way. Or I can try to perceive and respond to these loud chaotic jumbles of ever-changing information that have clear expectations of how I must respond to them and that come with parts like eyes and certain motion styles that can be quite intimidating.
This is of course not how I normally describe people. But it’s how I normally perceive people, the newer the person the more chaotic. I know what people are, over time all the information settles into my brain in mostly the right places, but it settles slowly and the initial impression of any new person or thing is of painful chaos, more chaotic the more complex, and people are among the most complex things out there.
Unless there’s some way that they fit into a pattern, such as the pattern of the people who come to help me shower, in which case it’s easier. The people who come to help with other things, unfortunately, do not fit into a pattern so well since what they help me with differs depending on the day. With the showers there is a written set of instructions that everyone follows pretty much the same way every time.
Some people are more chaotic than others. Yesterday I had a staff person who was so chaotic that just having her sit quietly behind me was exhausting. My friend has a staff person who is similar, and induced rapid shutdown in both of us with her constant friendly smalltalk that expected a response. Neither of these people are bad, they’re just exhausting to many autistic people. I’m sure that to people wired to deal more efficiently with that kind of information, both of them seem very pleasant and friendly.
But it is these different perceptual experiences. Different responses. Different internal experiences. Those things are the root of autism. The social stuff is just the result of the collision between this brain system and non-autistic brain systems.
This post is a long-winded way of saying that Autism and the Myth of the Person Alone is quite right about certain stereotypes being wrong, and about aloneness not being the essential aspect of being autistic. And of also saying that, even though this is true, it’s still the case that being alone a lot is as necessary to many of us as sleeping. Sleep does not define the non-autistic mind, but it’s certainly necessary to it. The fact that we often go off by ourselves is quite often a way of protecting us from an onslaught of sensory information, expected motor responses, and pain that we could not handle. But it’s not The Ultimate Definition of who we are or necessarily a sign that we can’t ever stand or understand people.
Similarly, I am exhausted by writing this, because I am exhausted by language of any kind, expressive or receptive. However, there is a stereotype that autistic people (especially those who look like me, apparently) can neither understand nor use language. This is not true. But it is not true, either, that I find language easy and non-exhausting or can sustain it indefinitely. The exact opposite of the stereotype is no more true than the stereotype itself.