I've always been bemused by the fact that I appear "unfriendly" so much of the time. As long as I can remember, people have been telling me (eventually) that when they met me they saw me as "aloof" and unfriendly. Their subsequent conclusion, if they spend enough time with me to glimpse what I certainly see as the basic friendliness of my nature, is that I must be "shy."
News Bulletin: I am not shy. I am autistic.
The reason I'm writing about this now is that I need a way to help my friends understand why I so often want them to go away. Specifically, I feel a need to explain why I often am upset by their presence even if they are doing their best not to bother me.
I asked for help on this project from a group of on-the-spectrum people I know via the Internet. With their permission, I am using some of their ideas here as well as my own.
KB wrote: " I liken our low tolerance for social contact with a dyslexic's easy fatigability with reading. It's hard for us to interact, and our neural machinery is lacking in this area. It's easy to overtax what we have. To put it simply: I just ain't wired for the social stuff."
One way to look at it, in other words, is to think of being on the autistic spectrum as having a social learning disability. Most of us prefer to think of our autism as a difference rather than a disability, but it's undeniably true that our difference looks and feels like a disability when we are measured (and found lacking) against the mainstream social norms.
Patty Clark suggested: "There is only a certain amount of sensory input and attention-paying we can give in one day to what is happening outside ourselves. Because the neural machinery integrating our senses and identifying happenings in the outside world doesn't work correctly, we must work much harder to speak and listen, answer questions, etc. than the 'normal' person does. Working harder has the same effect on us that it would on anyone else - we get tired. When tired, we work less efficiently, especially when it comes to paying attention to the world and reacting to it. So we need desperately to be left alone long enough to feel recovered from the exhaustion of dealing with people and other aspects of the world outside our bodies.
"If someone insists on being around more than is comfortable, it is the same as keeping someone up past their bedtime, or overworking a child on homework, or any of the other things that 'nice' people would never think of doing. But they seem to think it is okay to pursue us to exhaustion just because they want a lot of our company at one time. Just because having someone around doesn't exhaust them and make them want to cry or scream, they truly believe the experience can't be having that effect on us.
"They're wrong. We just can't keep on taking it without having our personal boundaries trampled and our minds and bodies overwhelmed. When we say, 'I have had enough visiting,' a true friend will smile and say goodbye and come again some other day when we are able to handle a little more socializing."
That's the gist of it, but I'm not sure how well those two explanations will work for non-autistic people. Maybe a specific example will help: My friend came over to paint the porch steps outside my house. She thought she was doing something good and nice, and she also thought she was being very considerate about not requiring my presence or attention. In fact, though, and leaving aside the question of whether I wanted the steps painted at all, she was imposing a drain on my system.
She needed to ask me a few questions: Where is the dust broom? Where are the hose and outside spigot? Easy questions that take only seconds to ask and answer. She added up the time actually used for these exchanges and concluded that she couldn't possibly be bothering me to any significant degree at all.
What she was doing, however, was taking over a large chunk of my day. More importantly, she was taking over a large chunk of a very important part of my day, the part that could be mine, the part where I do not have to be at work or otherwise engaged in activities that expose me to or involve me with other people. From the second she called to say she was coming over until the minute she was gone and out of sight: all that time was lost to me. It became not my time but "social" time.
In addition to the time and attention I had to give her in answering questions, I had to deal with the difficulty of changing my focus back and forth from my own thoughts to answering her requests and then back to finding my own way again. Non-autistic people probably take for granted the ability to "shift sets," moving from one focus to another quite rapidly and unconsciously. Many autistic people find it difficult and tiring.
No matter how good a friend she is, being with her is not like being alone. Being in the same house with her (or being in the house when she is near and may at any time decide to engage my attention) is not the same as being alone.
And I need to be alone. Not just "not bothered." But alone.
"Social" time (time spent with anyone) is a form of work for me, whether I'm "at work" or with a friend at home, and I always need a lot of time alone to rejuvenate. What feeds other people's mental/emotional batteries is a drain on mine (on an autistic's).
Here is another example. I had been thinking for some time that I really should get my passport renewed, mostly because I was approaching the date when it would no longer be possible to renew it by mail. Hoping to avoid a trip to the downtown office, I printed the necessary forms off the Web and had everything in hand to do a mail-in renewal except for the two little photos. Easy enough to get, aren't they? Well, no.
Finding and choosing and entering an unknown place of business is a major chore for me. It is labor. It takes a lot of energy. Especially when what I need is not something familiar, like an apple, that I can find and pick up on my own. This was something I would have to put together words and sentences to ask for, something that required me to interact socially with a stranger. Interacting verbally requires near-instant shifts of focus, reacting to the other person's questions and answers quickly enough to keep the conversation alive and "normal."
I "didn't get around to it" for over a month, because just thinking about it exhausted me. Finally, my helpful friend went away for a ten-day vacation. She is someone I love and care about, someone whose friendship I cherish. I also rely a great deal and in many ways on her decidedly non-autistic skills. Sometimes I refer to her as "the person who takes me places," because with her I get to go many places and do many things I'd never reach or attempt on my own. I suspect that someone examining our relationship from the outside would think that she gives me more than I give her.
What an outsider cannot see is how much she takes from me. This is not her fault, of course. I can tolerate her presence much more easily than anyone else's, because she is willing to work on it and we have been working on it for about 20 years.
Nevertheless, it's true that after she had been away for almost a week, I found myself w ith enough energy inside that I was able to get those passport photos taken with impressive ease. Almost as if it were nothing. My friend gives me a great deal. What she takes (without meaning to) is my energy.
Interacting with her (even pleasantly) uses up, as Patty said, a certain amount of the sensory/attention facilities I have available for that day. Talking to her, or even keeping myself in the mode that allows me to respond adequately to her when she asks where the broom is, fatigues me as if I were a dyslexic and had to "read" her throughout every minute of her presence.
Responding "adequately" is something autistics are bad at, in NT (neurotypical) terms. Some of us (including me) can do it fine - for a while. Until we are exhausted or just plain fed up.
For some of us, the limits are more extreme. Marla Comm, a Canadian autistic, for example, is unable to form social friendships, unable even to want them. She explains her situation: "Someone who needs a lot of help but who can't afford to pay anyone for it and who can't get subsidized services for the disabled has no one to ask but friends and relatives. If you hire help, you pay for it in money. If you get government services, you don't pay directly (your tax money pays) but you're still not expected to give anything back to the person paid to help. Friends who volunteer to help you, on the other hand, do expect something back. They expect the relationship to be mutual, to be based on give-and-take.
"That's something I can't handle at all. Unable to afford private help or qualify for services, I have been told countless times to find a good friend to help me. As an asocial autistic, I don't seek out friends for anything, but the last thing I'd do is try to start a relationship with someone in order to get help from them. I am all too aware that such a relationship would demand things from me that would strain me to death. Hence, I don't even consider the idea. Already, whatever groups I find myself in due to my job or my living situation come at a price - more colds, other stress-aggravated health woes, and worse, more destructive moods."
Each of us learns to compromise with society and with our own natures, each of us will find different levels of social-interaction possible at different points in our lives. But none of us on the autistic spectrum will be able to be "normal" when compared with the norms of the NT (neurologically typical) majority. We aren't "being difficult" on purpose. Our lives are made difficult because other people's expectations contradict and sometimes assault the realities of how we experience the world.
Nor can we take it for granted that we will be able to get along comfortably with all people on the autism spectrum. Although this essay is by and about asocial autistics, there are some people on the spectrum who are as much or more social than most NTs (neurotypical people). These social autistics share with us our inability to "read" the social cues conveyed in the huge portion of NT communication that is not verbalized (body language, facial expressions, assumptions about what words and phrases mean when they are used according to convention or otherwise non-literally, etc.). As a result, they are likely not only to make many social blunders but also may be even more of a problem for asocial autistics than a reserved or "good mannered" NT would be. An autistic with a highly social orientation, who probably has suffered many rejections and is hungry for friendship, may be harder for us to relate with than a polite person who is neurotypical and has no notion about autism at all.
A week after my friend returned from her vacation, she asked me if I was depressed. No, I wasn't depressed, I said. "Just grouchy, then," she said, as if she'd figured out the answer to a question. What she was seeing was my "lack of affect." I wasn't responding with appropriate enthusiasm to her or with her. I was failing to get my NT mask on, failing to rev up my NT imitation to its full extent. I wasn't depressed, I was just acting "more autistic" than I usually do when she's around.
Understandably, friends don't like to be told, "Go away, I need to be alone." No one likes to feel she is a "drain" on someone else. But one inescapable fact about autism is that we lack the ability to interact with other people in ways that "fill" us rather than draining us. That is a large part of what autism is. And even those of us who are able to "pass" as normal or near-normal in some or many areas of our lives, even we need to ask our friends to try to accept us as we are.