On this page I plan to "stack" a bunch of very short bits of writing, most of them posts I have sent to one of the several autism- or AS-focused online groups to which I belong. You can click on a topic in the list below to go directly to the Snippet that sounds interesting to you, or you can page down and read them all. I add new ones at the bottom (left to right), so the newest snippets are those in the bottom row of the list.
|Self-Conscious or Self-Aware?||Short-Term Memory||Change and Growth|
|Low Affect||AS as Social Allergy||Scapegoating|
|Positive Job Experiences||Negative Job Experiences||Childhood Memories|
|What Supporters Need to Know||Phobias||Frustration|
|Are "Normals" Often Wrong?||Dating||Discourse|
|Me & Tannen on the Radio||Talking to Doctors||On the Spectrum|
|Cause and Effect||"Stupid" People||"Stimming"|
|The Cave (at College)||Sore Loser||"Mild" Autism?|
|Hoarding and Clutter||Naive Safety & "Signals"||Being versus Becoming|
|Alive vs. Not-Alive||Value of Adult Diagnosis||Procrastination, or The Mobility-Impaired Brain|
|My Rules, Your Rules||Self Knowledge and Delayed Access to Self||Defining autism vs. AS|
|Tantrum as SIB||Balancing Self-Acceptance and Motivation for Change||My "Stupid Areas"|
|Anxiety Rehearsal||Social Language: Swimming with Whales||Reality and Fiction|
|Are You AS or HFA?||Social Exhaustion||Communication Gaps|
|When Efficiency Leads to Meltdown||NT "Competition"||Peer Pressure|
|Learning Not to Hurt||Can you spell "pervasive"?||Homework Frustration|
|Sex and Asexuality||"Clean Your Room!"||Learning with the Body|
|When is a trivet not a trivet||Change and Fluctuation|
In May 1999, there was an online discussion in which an AS woman desribed herself as being "extremely self-conscious but utterly un-self-aware." A non-AS person asked her what the difference was between the two terms. At that point, I posted:
Here is another take on it. I "resonated" with __'s original statement, but of course I often find that my resonances are with my interpretation of what others write and may have little or nothing to do with what the writer meant. For me, __'s description means:
When I am in a group (worst case scenario: a party), I am extremely conscious of not knowing what to do, how/where to stand, what expression to (attempt to) impose on my face. I am very aware that I have no idea how to be part of the group and that I am excruciatingly uncomfortable. (Being sensorally assaulted, as is inevitable at almost any a social gathering, is another way of being self-conscious. It makes you conscious of all the bits that hurt, although the feeling may be experienced in a generalized form.)
On the other hand, when I am not in a state of acute self-consciousness (and maybe even when I am), I am so focused on particulars that I have no awareness of my self in many ways. I usually don't notice how I feel (physically or emotionally) in any detail at all, for example, until a specific feeling becomes acute, because I don't have any general monitoring function. At the point when a feeling becomes acute and forces itself on my attention, I have to stop and examine/analyze it in order to name/recognize it. This lack of monitoring function can be inconvenient when it keeps me from recognizing I am feeling sick until I am forced to realize I am about to fall down (or, on one occassion, that I am unable to breathe).
Nor do I have a general, on-going sense of how I am (or even that I am) in relation to other people. I so often am surprised by how people react to me, because I forget (or fail to realize to begin with) that they assume we are "in relation" simply because we are together. Also, I don't express myself in self-aware ways (e.g., I sound angry when I'm not). I am seen as talking inappropriately or at inappropriate times (e.g., talking "suddenly" to strangers, not talking at all to acquaintances), because I do not "monitor" how I am "supposed to" be/act according to outside circumstances -- another aspect of (lack of) self-awareness as (lack of) awareness-of-self-in-society.
A parent wrote in to the OASIS online group (for parents of AS/HFA children: OASIS) asking for suggestions on how to help her son with "short-term memory problems" he was having at school.
It may help to remind the school folks that a lot o f AS short- term, memory problems actually result from our difficulty in switching attention from one focus to another. I know there are many times when someone who comes up and starts talking to me (e.g., my boss at work) perceives me as behaving normally -- i.e., listening to what he is saying. But in fact what I am doing is making the switch from my previous focus. I am unable to "take in" what is said to me while I am doing that work (making the switch), so I have learned to ask people to repeat whatever they said to me while I was "otherwise engaged" and only appeared to be available to hear their words. Your son may not have figured out that this is happening to him, or he may not have learned to ask that the "missing bits" be repeated for him. He needs to be given the time he needs to switch from one focus to anther.
Then the parent wrote back to clarify that her son has trouble responding when he is asked questons like "What did you have for lunch today?" or "who did you play with at recess?"
So I wrote:
This sounds a lot like B when he was young. He never was able to respond "adequately" to questions. He still doesn't do it well now, come to think of it, and he's almost middle-aged. The reason his responses seem inadequate, I think, is that nobody recognizes the amount of energy the process takes for him (and for many or most of us on the autism spectrum).
Like a lot of us (ASers), B operates much of the time by inertia. We can be regular beavers (unstoppable beavers!) when we are doing something that interests us a great deal. But it's agonizingly hard for us to get started on anything that doesn't spark our interest. All motivation has to be internal. Something has to turn the engine on, or else we are stuck pushing not only our bodies but also our minds by brute force up a very steep hill.
When someone asked B-as-a-child an "easy" question like "what did you have for lunch," his first problem was that he was not (at the moment of the questioning) at all interested in what he had for lunch. His engine remained "dead" to that question, so it would be a tremendous amount of work for him to analyze it (the words), dig through his un-awakened mind for some appropriate response, and then put together the words required to articulate the answer. Instead, nine times out of ten, he responded simply, "I don't know." or "I don't remember." In fact, he didn't remember, because to remember would have required a lot of work. AS minds don't seem to have the capacity for multi-focus, multi-tasking, or trivia-retrieval that NT minds excel at. What's "easy" for an NT person is hard work for us. And sometimes we just don't have the will or the energy we'd need to overcome our inertia.
When B was in high school, he went on a trip abroad with some members of his class. Everyone was delighted for him and eager to hear all about it. Alas, when he got home, he had nothing to say. "How was it?" someone would ask, and he would reply, "Okay." Only much later did we get to hear any of his stories from the trip, which he could (and did) tell very graphically when and if he was inspired to do so by some internal cause. Until he was ready, though, the "cost" of retrieving those memories and putting them into words was prohibitive for a young ASer faced with the strain of getting through the day-by-day challenges of life and school.
B's experience is true for a great many AS people, I think.
An AS member of an online group commented that many doctors who study Asperger's Syndrome insist on creating one forumla or one picture of what all AS people are like, regardless of the AS person's age, experience, or interests.
You're right. The doctors (most of them) also tend to forget that autism is (among other things) a "pervasive developmental delay" mechanism of some sort. That is, many "experts" carry on (and talk to parents) as if the way an austistic person is at age 8 determines the way that person will be at age 38. They forget that we change and grow, that our "systems come on line" at unexpected times, often much later than our age peers.
I had an incredibly frustrating email interchange this week with a woman who had read my "Differently Brained" essay and wanted to explore the possiblity that she might be AS. Talk about rigid thinking! Because she had learned to "read" NT conversational gambits to some extent, she assumed that meant, despite copious evidence to the contrary (provided by herself), that she had no deficiencies at all in that area. And if she was "okay," that meant she could feel free to assume that the problems she continues to have when trying to interact with other people are caused entirely by the other people's stupidity. No matter what I wrote, I could not persuade her that the NT [neurotypcial, non-autistic] people with whom she interacts have good reasons for the "stupid" things they say and do. For their mode of being (labeled "normal brain function" by the experts), their conversations are far from the "stupid waste of time" they seem to her. She apparently needs to think of herself as "okay"/"normal" (non-autistic), even if it means believing that everyone else in her town is a dope.
The fact is, of course, that most of us do learn a lot about how to get along in NT social environments by the time we are approaching middle age. Many of us (me included) do not develop the ability to use NT communications skills (including non-verbal) well enough to "network" or to enjoy NT social occasions. But that doesn't mean we haven't learned a lot since we were the age upon which AS experts prefer to focus.
On March 15 I was suffering horribly from a literally unbearable ear ache (plus nausea and dizziness to the point where I couldn't stand up). I called the clinic and talked to a nurse who told me I should have someone take me to the emergency room immediately. So I called my friend Nancy who has known me for about 25 years and, I believe, really does care about me. As usual under stress, I had become (without realizing it) "low affect." That means the emotional nature of my situation did not come across at all in what I said to Nancy. My words were literally true ("The nurse says I need to have someone take me to the emergency room"), but instead of responding to the reality I was experiencing, Nancy's reply was, "Okay, I'll finish breakfast, take a quick shower, take Sam [one of her cats] to the vet [for a routine appointment], and then I'll come by to get you."
When I'm in agony, I sound (apparently) as if I'm discussing the chance that we might have a bit of rain today. It's not at all a handy way to be!
An OASIS (OASIS) parent wrote to say she found it humorous when her AS child sai d he was "allergic" to something he didn't like.
I have always told people I am allergic to things I need (or prefer) to stay away from, and I don't understand why it seems funny or odd to say it. After all, I do react with my whole self to many things/situations, and if I react negatively it's not so different from breaking out in hives. The hives are inside, that's all.
In fact, it would be possible to write up a good basic description of AS, at least from one angle, as a systemic social allergy with specific manifestations varying from person to person.
Someone wrote in to an AS forum about the experience of being scapegoated, being blamed for things that are more true of the person attacking you than of yourself. It has often been noted that humans will try to "project" their fears about themselves onto someone else so that they can "destroy" their own badness by destroying the person (the scapegoat) onto whom they have projected the aspects they hate about themselves.
Thinking about this in terms of AS and NT's (neuro-typcial people), I wrote:
I have a theory that NTs perceive us (although they do not realize it) as partially blank. Just as we do not receive all the non-verbal signals NTs use to communicate with one another, we also do not emit those signals. Because NTs are "programmed" to "read" each other by those signals, they are apt to "see" them whether they occur or not. If we are not emitting signals, NTs will perceive their own signals as they bounce off our blankness. They are not aware they are emitting their own signals, so it's easy for them to confuse their own echoed emissions with those they expect to receive from us.
The same woman commented that people perceive her as intelligent and draw unwarrented assumptions about her, as if her intelligence could not co-exist with weaknesses and areas in which she is less "intelligent." I responded:
I suspect that there are aspects of our communication style that make us appear more "intelligent" to NTs -- and of course they do not know about "scatter skills," so they assume an intelligent-appearing person is uniformly and consistently intelligent throughout/in all areas. The aspects of communication style I refer to are that we tend to be blunt, not hiding our opinions behind "polite" small-talk, and we probably lack some of the "feminine" body language that further softens the communication of most (NT) women. In other words, we communicate "more like men" and therefore appear "more intelligent" (than women historically have been allowed to perceive themselves) and "stronger" (because men's styles have been the standard for what is "strong").
That means that when we are scapegoated, our attackers have the (unconscious) satisfaction of overcoming someone who is a doubly satisfactory victim: 1) a male stand-in (and it's always more satisfying to conquer a "stronger" victim), and 2) a deviant who is female but "presents" with (unconsciously acted out and unconsciously perceived) "male" aspects.
Someone in an AS forum responded with surprise when I wrote that I found my boss supportive on the few occasions I'd "lost it" at work. Shortly thereafter, I wrote a post in which I pondered why I'd had such good luck, overall, in my work life:
I don't know what factors have made my employment (just passed the 20-year mark with the same institution) possible. Maybe part of it is that I work at a university, where the proportion of "eccentrics" is higher than in the for-profit world. When I started at the U, I had such little "status" that nobody noticed me -- and, of course, the work I was given tended to be easier and mostly repetitive chores (which I like). I tend to hyper-focus (if I focus at all) and am a "whiz" at completing "mindless" repetitive tasks. I'm also very good at transcribing dictation. When I was "elevated" from file clerk to secretary, it happened to be at the point in office-work history where a knack for transcription -- using a typewriter, remember, not a computer yet -- was in high demand.
When I finally moved from the entirely bureaucratic areas of the U into one of the academic units, I was truly among people who are inclined to accept "diversity"/eccentricity. I was lucky, too, that my bosses valued the particular kind of intelligence I am able to exhibit. I am interested in many of the same things they are, and I comment on those subjects (spontaneously) in a way that gives them respect for my intelligence and opinions. Another piece of very good luck is that I have been assigned to work for people who accept (and even appreciate) my total lack of status consciousness. I don't seem capable of treating people differently according to some hierarchy of "importance" invisible to me. My bosses know that I treat people with the respect I think they deserve - and they seem motivated to retain my respect.
One odd thing: people tend to perceive me as "moral." Sometimes this is a negative thing, because I am seen as "moralistic" and "judgmental." Other times, people seem to see me as "pure" in some way. They seem to know somehow that I do not lie, steal, cheat, manipulate, etc. (except in extraordinary circumstances) and that I expect the same from everyone (until something happens to flip my either/or trust-function switch from on to off).
I think my bosses routinely over-estimate my abilities, particularly when it comes to anything requiring memory or organization. They seem to like me, though, and I try not to disappoint them.
I guess it's been very helpful to me all along that I tend not to feel very involved with work or the people there. "Anthropologist on Mars," as usual. I am not able to perceive the "office politics" that makes people take sides against one another. I don't care what people think of me, as long as my boss is satisfied (because I do need to keep the job), so I don't walk around feeling put down by those who think I'm weird. I don't have a lot of "self-esteem" invested in the job, so I truly don't mind if/when I am asked to do work that is "beneath" my status as a "Program Coordinator." (Of course, it's also true that I usually enjoy the more "menial" work more than the "more responsable" chores I have acquired through the course of years.)
Sometimes I think I also still benefit from the gap between my age and how people perceive me. I'm 51 years old, after all, and have had a lot of time to "mellow" and learn from experience and acquire interesting bits of information (that makes me appear "smarter" to some people than I otherwise would). And yet I seem to come across as younger than I am -- maybe I "act young," though I have no idea what that may mean.
Although I've had such good luck with jobs for the past 20 years (with a couple of minor exceptions, come to think of it), my earlier job life does reveal some fairly typical AS-related problems.
The first several jobs I had were arranged for me by my mother, beginning with a "helper" job at the local public library when I was in high school. I was small and looked significantly younger than my age, so most people tended to feel like I needed taking-care of. They were not surprised, I think, that my mother was helping me out in this way.
I enjoyed the library job except for two aspects. Occasionally I was asked to work behind the counter for a short time. That meant I had to interact with library patrons, and I never managed to do it well. I liked interacting with books, not with people. The worst part was when someone wanted to pay an overdue fine. I was not able to make change, nor could I explain that I could not do it. If I had looked my age, I suspect I would have been scolded and/or ridiculed. Instead, people simply took the change themselves when they realized I was not going to do anything but stand there with the change drawer open looking confused. It's possible that they did ridicule me in some way that I did not notice. (I don't remember ever looking at one of them.)
The other unpleasant part of that job was working in the children's section on Saturdays. All I did was re-shelve books, which I liked. But I often got "seduced" into looking at the pictures in the books, and the children's section library scolded me (in a way I didn't like; I wasn't used to adults "talking down" to me) whenever she caught me looking at a picture. My resentment against her lasted from that time (1966-67) until yesterday when I realized she might actually have been trying to instill "good work habits" in me. She's still wrong, but I don't feel resentment against her anymore.
After my first failed attept at college, my mother got me a job with the national American Friends Service Committee office, as a secretary. My perfectionism went over very well there and the people were nice to me.
My worst jobs were those I found on my own when I was stuck in Chicago for a while in 1969. I worked briefly for a mail-order dental supply company. The boss's instructions did not make sense from my POV, and I had no idea how to talk to him so I left.
My next job was at the bottom rung of the clerical ladder at Encyclopedia Britannica -- the only employer who ever fired me. The official explanation for the firing was that I had proven myself "unable to adapt to an office environment." I had done fine in the AFSC office environment, but at EB employees were expected to look and act "right." My clothes were not "right" and my body langauge was definitely "wrong." I did not know what to do when I ran out of work (which I did every day, because I didn't know enough to work slowly), and I was observed to be "lounging" at my work table. The two women who told me I was fired acted as if they were afraid of me. That makes me think that I probably was seen as "weird" by the other people who worked there -- possibly because I never talked to them. I didn't know how to talk to people spontaneously, and no one I overheard was ever talking about anything of interest to me.
A non-autistic person asked me about my relations with my siblings. I responded:
My sisters (two of them, one 7 yrs older than I, the other 2 yrs older than I) probably saved my life -- and my mother's. They both had strong maternal streaks, well prepped by my parents during my gestation. By the time I was born, they were ready to be little mothers to me. They took turns playing with me (for years and years) in ways that sound very much like the "therapies" and "training" now recommended by autism experts.
We're still close, although they live hundreds of miles away. Both have been married and have children. Here's something I sent to another forum about a recent conversation with my oldest sister:
I don't usually talk to my siblings on the phone, simply because I hate being on the phone. Since I've been sick (pneumonia), though, my two sisters have been calling to check up on my progress.
Yesteray, my oldest sister (A) called and the conversation took an unexpected term. I've never had any success in getting my sisters to remember anything about me that might be an indication of what AS looked like in my childhood. They tend towards bromides, I guess. And since I lack strong powers of early-childhood recall, I usually feel as if my childhood is lost to me.
But then A suddenly was saying how much her 5-yr-old granddaughter reminds her of me when I was that age. First she said that her granddaughter walked into the room one day and asked if she believed in reincarnation. Not a question one expects from a 5-yr-old, apparently, but A said it reminded her very much of me at that age.
More exciting for me was what she went on to say -- again, saying that her grandaughter's behavior reminded her of me at 5. Her granddaughter started kindergarten, and for the first few days she refused to interact with anyone. When anyone approached her, even a teacher, she would "close up like a flower" (my sister's words). After several days, this "shyness" began to dissipate. That's when her mother (my sister's daughter) discovered that the child had taken to wearing her favorite bathing suit to school every day under her clothes. Fortunately she is the kind of mother whose reaction to something like that is, "Whatever works!" She washes out the suit every night so her daughter can wear it to school the next day.
That's exactly what my mother did for me when I started school, my sister tells me. As soon as she mentioned the clothes in question (a skirt and short jacket made of soft, soft cinnamon-colored corduroy), I could feel them immediately. A very happy memory for me (the clothes, not the school).
An AS woman who lives in "sheltered housing" asked for suggestions. A new support worker would be starting at their house soon. What should such a support worker be told about people at the "high-functioning" (AS) end of the autism spectrum? Here is my response:
I agree with N___ about the importance of their keeping in mind that each AS/autistic person is unique and should not be approached on the basis of stereotypes (even if those stereotypes are enshrined in medical texts).
For me, if I were going to be living in a house where support people were working, it would be important to talk about anger. I would want them to understand that when I get frustrated I am likely to sound/act a lot more angry than seems reasonable to NT people. Some NT people are even afraid of me when they perceive me as "unreasonably angry" during a spell of serious frustration.
What's important for the NT to understand is that my anger (which actually I don't usually feel/see as anger at the time) is not personal. It is the situation that is making me so frustrated that my inner "switch" is flipped and I am put into a mode of behavior that I can't escape from for the moment. Usually I need to retire to a quiet place where I can be alone for a while so I can decompress and wait for the inner switch to flip back to calm mode.
Therefore, the support person should try not to take my "anger" personally. If there isn't anything abvious to be done to resolve the situation that is causing my frustration, the support person might want to suggest that we "retire to separate corners" and deal with the problem at a later time -- perhaps even in writing or by email. It would be helpful if the support person was willing to accept the impersonal nature of my "anger" to the extent that s/he wouldn't insist on an "apology" every time I acted in a manner considered "rude" by NT standards.
Oh, and another thing: I would emphasize that AS/autistic people's "intelligence" should be assessed by their areas of strength, not their areas of weakness. Some of us are of at least normal intelligence (whatever "intelligence" means) but have areas in which we are "stupid" by NT standards. Therefore it is not a good idea to assume, "She's smart, so she'll be able to do _____." Nor is it a good idea to assume, "She can't do _____, so she must not be very smart."
Someone wrote to a AS forum asking whether anyone else had had any "weird" fears or phobias in childhood. I responded:
Your fears don't sound weird to me. I went through a several year period where I was afraid of encountering a bear (a live, wild bear) in my house. It took me years of conscious "cognitive reprogramming" to eliminate the fear from my reflexes. I was in my late 30s or early 40s at the time.
I'm not sure whether my phobia about vomiting is a "fear." It feels more like loathing. I don't vomit if it's physically possible to resist. Even when people say, "You'll feel better if you do," I don't.
Sometimes I experience a panic about falling. This is not the same as the fear I sometimes have when walking in a high place (e.g. a bridge) that I might throw myself over. The panic I'm talking about is when I'm walking along the sidewalk or a hallway or going up or down stairs and suddenly lose track of physical relationships so I'm unsure what comes next, where my foot is or should be going, whether the floor/stair/ground will be where my foot expects it to be, and so on.
When I was a child I went through the germ phobia that I understand quite a few AS kids experience. I washed the skin off my hands for a while.
I suspect I'd have a lot more phobias if I didn't have ritualized ways of doing things. For example, now that I live alone (since my mother died), I have to go through the pre-bedtime ritual with my bears. It takes the place of the smaller-scale ritual of saying goodnight to my mother. If I didn't have the ritual, I am sure I would be afraid of being alone in the dark.
My companion animals ward off scary thoughts, too -- not only the two cats but also the bears and the smaller animals who go around with me during my out-of-house activities. Every day when I go to work I have with me either my first "fetish" bear (in a little bag worn on a string around my neck), a small manatee (that is made to be worn as a pendant), or a silver lizard (a pin). For me this is like having a second soul, not someone separate with whom I have to relate in a tiring way, but part of me that is just separate enough to help support me through interactions with others (if that makes any sense).
The times I sound angriest to other people is when I'm highly fruststrated. People insist on perceiving me as angry, and sometimes they act afraid of me. But I insist on the fact (it is a fact, as far as I'm concerned) that what I'm feeling is frustration, not anger.
A typical situation where this comes up is if I have to do something complicated (e.g., get help with a computer problem) over the phone at work. (It does happen when I'm dealing with someone in person, too, but I tend to avoid that.) Apparently I come on sounding very angry, possibly nasty. But I'm not angry. If I were angry I would be angry at someone (the person I was talking to, presumably). I am not angry, I am frustrated by an intrasigent situation.
That's when I may raise my voice (not in anger but in frustration) and even use "bad language." The way you can tell I'm really angry is that I'm likely to be crying, a reaction I do not have to frustraton.
An AS woman wrote that, despite her "oddness," her employers value her because she gets the work done. I responded:
Yes, that is true for me, too. And my OCD tendencies come in handy, because they make me pathologically prompt. I always get to work a bit early, and I show up every day. In fact, it amazed me when I discovered that some healthy co-workers use up their sick leave by not coming to work simply because they "don't feel like it" that day. It takes me so long to "access" my emotions -- and even my physical state -- that I would spend most of my time immobilized if I tried to find out "what I feel like doing" before I did it. Routines are what works for me.
Members of an AS forum were discussing why AS experts say AS people are self-centered. One woman theorized that it might have something to do with our lack of interest in other people's social lives. I responded:
Yes, I think so. I have noticed that most of the people around me (e.g., at work) seem to have a knack for collecting (and remembering) information about each other. It seems to be "natural" for them to do so, and apparently it plays some part in their ability to "network" with one another (the way socializing becomes a factor/tool in social, employment, and political advancement).
When I interact with people at work, I use scripts. That's the only way I have anything to say. There's no point in my asking them about themselves in the NT way, because I never remember answers to those kinds of questions. My brain seems to lack any storage capacity devoted to social trivia.
The way I establish relationships is by beginning with a common interest. If I meet someone with whom I share an interest and we interact on that basis, eventually I will begin (over the course of time, measured in years) to accumulate bits of knowledge about them.
Come to think of it, this has some resemblance to how I recognize people physically. Because I have prosopagnosia ("face-blindness"), I am unable to remember people on the basis of seeing them several times. My brain lacks the ability to "memorize" their faces, and it takes me a lot longer (than it takes non-faceblind people, who can instantly memorize faces) to estabish enough familiarity so that indentifying details begin to stick in my brain.
A mother on OASIS (OASIS) wrote about how her son tended to run away from situations that upset him. I responded:
Good grief. Reading your stories made me remember times when I have run away myself. Once I was on vacation with a friend, 3,000 from home, and I did exactly what your son did except that I got out of (and ran away from) my friend's car instead of a street car. She was taken completely by surprise. (I was in my late 30s at the time.)
What would have made it possible for me NOT to run away? I suspect it would take investing me with the power to shut the situation down. Here's what I mean:
I ran (and perhaps still would, at the age of 51) when I felt so totally frustrated by a situation that I had to get away or burst. Usually it was a case of not being able to "get through" to people I was talking to (they probably thought they understood what I was trying to say, but I felt that if they did understand, they would admit I was right!), sometimes a matter of feeling too acutely at-a-loss to bear it.
What I needed was a "time out." The only alternative to running away I can imagine would be for me to have a signal to be used only in emergencies (i.e., if I got to the point where running away felt like my only option). When I gave the signal, everyone would immediately stop talking to me, switch to a different subject entirely, and generally put everything "on hold" until I had a chance to process my feelings and regain equilibrium.
I'd also need someone to accept that the crisis-level emotion I was feeling was real and, in itself, did constitute a crisis (for me). That means not trying to talk me out of it (e.g., telling me that the level of feeling was inappropriate for the situation).
I imagine this as a bargan I might be able to make with certain people (family, close friends): If you are willing and able to accept my need for crisis time-outs, and if you are willing to participate in them when I need them, then I will undertake not to run away (because I realize it is a genuine matter of concern for you to have me do that).
Don't know if that would work for anybody in real life, but I can imagine it working for me if I had cooperative companions.
An NT (neurologically typical, non-autistic) woman commented that, although a major diffrence between "normals" and autistics is that "normals" are said to be able to "read" non-verbal signals, even "normal" people often "get it wrong." I responded:
Maybe one tentative conclusion to draw from the above is that quite often "being wrong" doesn't make a big difference. Sometimes it does, obviously, and can lead to big problems in interpersonal relationships. But if NTs are "wrong" about the way they interpret casual conversations (presumably because they tend to interpret from their own POV, which may not be shared by the other person, and perhaps also on the basis of more-or-less subconscious preferences), it may often be a case of "no harm done."
Being "wrong" without consequences may tend to reinforce behavior, so NTs -- not realizing how often they are "wrong" -- may gain unrealistic confidence in their own interpretive powers. (This would cause major problems for their interaction with autistics, BTW, because the more sure of themselves the NTs are, the harder it will be to persuade them to try a more open-minded approach.)
Maybe what's important for NTs is the (more or less unconscious) act of interpreting social input. Whether they are right or wrong may be less important for them than their sense that they are participating. When they meet up with an autistic whose forms of communicating do not allow for the full experience of signal-sending and signal-receiving, it may be the lack of mutual participation that is most troubling for the NT person, rather than a feeling/realization that s/he is being "wrong" in interpreting what the autistic person is communicating.
Just playing with ideas here, folks.
I've been on exactly one date in my life (I'm 51), and I didn't realize until afterwards that it had been a date. That's when I lost a coat I inherited from my grandmother because all I could think of to do (to escape) was to sneak out of the theater when my "date" thought I was in the ladies' room. (I was 19 at the time.) Most young women would have tried talking to their "date," but I had no idea how to do that.
From there, I wandered the streets of downtown Philadelphia alone for a while (at night) and then got the bright idea of visiting my sister. So I got on the train and, when I got off again, realized I had no idea how to find the way from the train stop to where she was living. So I was wandering around at night in the country (narrow roads, no sidewalks) until a man picked me up. Luckily, he took me directly to my sister (instead of raping me and leaving my dead body by the side of the road), and she managed to get me home again.
That was my one big date!
I suspect I wouldn't have had any sexual experience either if I hadn't been perseverating on anti-war activities in the 1960s. As always, my "friends" (some of whom, a few, actually did become real friends) were those with whom I shared a strong interest. And, as I wrote earlier, a couple of the people with whom I was engaged in that work managed to arrange things so that sex was a "natural" part of it all. Never meant anything to me, it was just another "social activity" that I allowed myself to be walked through because: 1) I dimly wanted to do what was the right thing to do (and I had to take other people's word for what was right socially, because I had no independent idea of what social interactions should be like among my age peers); and 2) it was too much trouble to figure out how to say No. I had no words to explain anything about myself, so I tended to let other people's expectations go unchallenged.
Someone commented that people thought she was "opinionated" (a bad thing) if she stated an opinon. I responded:
I see this as part of the "psychologizing" of the culture. In the U.S., it used to be accepted as part of the democractic process -- a necessary part of that process -- for people to have and to discuss a variety of opinions/perspectives on any given topic. But now, psychology has replaced civil/political culture to such an extent that the primary objective is "do not hurt anybody's feelings." And if you express an opinion, you are seen as "putting down" (and thereby hurting the feelings of) anybody who does not agree with you.
The assumption seems to be that people are so fragile (in psychic terms) that they will be damaged by having their feelings hurt -- and that their feelings will be hurt by conta ct with anything that does not "validate" them in every way.
I find the whole attitude annoying. It's undemocratic, it erodes the basis for democratic civil society, it inhibits free speech, and it makes life more bland than it ought to be. Plus, it makes most NT people who still retain their own opinions add on a lot more NT-type verbal and non- verbal expressive trimming to their conversations because they know they have to go out of their way to try to avoid "offending" people. My preference is for unadorned, to-the- point speech (i.e., speech I have some hope of understanding), which currently is very far out of fashion.
An e-mail from June 2001:
This morning, the local NPR (National Public Radio) station interviewed Deborah Tannen for 40 minutes. She's the person who investigates language use and writes books about it. She has written about how men and women use langague differently, and now she is promoting her new book about language use within families.
The program was taking phone calls and also e-mail messages. Suddenly I was inspired to send the following e-mail:
Deborah Tannen keeps saying "We all...." As in, "we all are mind readers." I am one of a rather substantial minority of humans for whom none of that is true. We are called "high functioning autistics." Because we do not fit the usual stereotypes people have about autism, we often are able to "pass as normal." But our social skills, especially those of the kind Tannen is discussing, are severely deficient. Autism, including the high-functioning variety, is a neurological condition, not a psychological state or neurosis.
I just wanted to let KUOW's listeners know that we are out here. If you meet someone who seems "different" in the terms Tannen is discussing, you may be face to face with an autistic person like me.
A few minutes later, I heard the interviewer say, "I want to close now with an e-mail." He then proceeded to read the first paragraph of my e-mail. He did not read the second paragraph, nor did he give my name.
Deborah Tannen responded in a very positive way, if maybe a trifle condescending. She said she has read Donna Williams and Temple Grandin, and she "validated" the reality of autism and the communication difficulties it causes. Talking about DW and TG, she said autistics have to learn deliberately the kind of stuff NT people pick up by osmosis, and she said she realized how difficult this is.
Not bad, overall. At least it got the existence of autistics-out-there-in-the-world a mention.
Someone wrote to an online autistim group to say that he was having a hard time communicating effectively with his doctor. I responded:
It sounds like you and I have the same kind of experience when we try to communicate with doctors. I even find the same kind of mis-comprehension happening with my physical therapist, but luckily the results haven't been serious (yet). Even when she understands my words/sentences, my actual meaning doesn't come through the right way to her. Very strange. And I do think she is being as open and sincere as she can be.
With "my" doctor (a young man I have seen three times), the problem is worse because it is more important to me (for very pragmatic reasons) to be able to communicate with the person I depend on for medical care. But it's such a struggle every single time (every sentence, almost) that I usually give up and leave feeling defeated. When the doctor starts out (because of the way the system works) short of time, short of attention, short of knowledge (about the patient in question)....there is no viable basis for the kind of work we (Aspies) require if clear, functional communication is going to happen.
I really am beginning to think that the only way I'll ever achieve minimally satisfactory communication with a doctor is if I can find someone to act as my aide and interpreter. This would not be a small task. It would require the person to spend time getting to understand (from my POV, of course) what the issues are -- the issues of medical concern and the issues of what kind of treatment/response I'm looking for. And the aide and I would have to practice ("role play") how the aide could participate in the communication with the doctor in a way that would keep my POV clear and get all my issues addressed without making me feel like the situation was being taken out of my hands.
My sister used to be able to perform that aide function for me. She could go along with me to the doctor and make sure I didn't walk out at the end of the appointment feeling unheard and misunderstood. But alas, we now live in different countries, different time zones. I'm supposed to be an adult and do stuff like doctor visits on my own.
A couple of ANI (Autism Network International) members, I think, have persuaded medical professionals to allow them to communicate with them in writing during face-to-face appointments (either writing on paper by hand or using a portable keyboard instrument of some kind). Like you, I, too, feel I express myself better in writing than orally, but I dread the kind of struggle I am afraid I'd face if I tried to get "my" doctor to take the time to read.
A new-comer to an online group (InLv, Indepdendent Living on the Autism Spectrum) asked for clarification about what "spectrum" meant to the group. She also wanted to know whether describing ourselves as "on the spectrum" meant that we thought all of us were alike and that all NT (neurologically typical, non-spectrum) people are all the same. Here is my attempt to provide my interpretation:
The autism spectrum is made up of people on the autism spectrum, obviously. Not everyone here (on InLv) is on the autism spectrum, but most are "neurologically atypical" in some way -- or several ways. (And some who are on the autism spectrum have "comorbidities," as the doctors like to say when they mean a person has more than one "abnormality." I, for example, am/have Tourette's as well as being on the autism specturm, and I'm not the only one here for whom that is the case.)
When we talk about the autism spectrum, we are talking about people who have certain things in common. We don't mean that all people on the spectrum are alike, just that we have enough in common to make it helpful to talk about our commonalities -- because much of what we have in common is what we do not have in common with the people we refer to (using a kind of handy shorthand) as "neurologically typical" (NT).
Every blind person is unique, but all blind people have in common the fact that they are "different" from the social norm in their visual (dis)abilities. Many blind people have lots of things in common with lots of sighted people, but that doesn't mean it isn't useful at times to refer to "blind people" and compare their experiences of life with those of "sighted people." It's not a stigma thing, as if one "side" (blind or sighted) is good and the other bad. It just happens to be the case that sightedness does make a difference in how people experience living within human communities. And the same is true for the traits shared (in a various and overlapping and discontinuous way) by people on the autism spectrum.
That's how I see it, anyway.
It can be helpful for blind people to have an opportunity to share their experiences, and even to kvetch about the ignorance of (many) sighted persons. Even "conditions" that are purely social constructs can produce experiential results that make "community" (of the kind we have here) helpful and useful. "Race," for example. Whatever is perceived as "odd" will have significant effects on a person's life. We've all experienced that. Some NT people want to deny that there is any such thing as NTness. But if that were true, "odd" people would not be so universally stigmatized and isolated by the majorities in which they find themselves.
Subsequently, the thread took in some discussion of autistic "mind-blindness." My comment:
I think AS people's mindblindness is probably analogous to blind people's visual blindness in that there are varying degrees and experiences of it. Also, I knnow that many partially-sighted people can (and do) learn how to use their residual sight to best advantage (and how to supplement it with other learned techniques), and I think AS people are like that, too. We all learn, over time and to varying degrees, how to negotiate our way through the (social) world using what residual/partial "mindsight" we may have *plus* techniques we have developed to disguise or compensate for our disabilities in this area.
Few or none of us are/is "perfect" in disguising our disabilities, however, or else we'd never recognize (or be forced to acknowledge) or AS-ness.
Sometimes AS kids decide they want to do something (e.g., wear clothing considered "inappropriate" for their age or gender) that will make them a target for teasing by their age peers. When the parent of an AS child wrote into an online group about a situation like that, someone responded by saying the child should be taught about consequences: you can do what you want to do, but if you want to do something that will lead to a bad outcome, you may decide not to do it. This was presented as an easily understood case of "cause and effect."
Easy for you, maybe. I've known some people (me, at a certain age; my brother most of his life) for whom that cause-and- effect relationship was extremely hard to master/accept.
When I was the age of the boy in question, I thought that
rationality was within everyone's reach. It is irrational
to penalize someone on the basis of gender for wearing a
certain color or for liking jewelry. Therefore, anyone
who taunts someone else on that basis simply needs to
have his lack of sense pointed out to him. Anyone who
continues to behave irrationally after having things
sensibly explained is "stupid" and should be resisted.
That's how I saw it when I was young, anyway, and your
cause and effect argument would have seemed to me to be
totally beside the point. I was right (rational) and the
others were wrong (irrational), so they should change,
This was my unsolicited follow-up to an online discussion about teaching AS kids "cause and effect":
I sent in a post yesterday that described how I thought when I was young that most people my age were "stupid" because they had interests I didn't share and because many of them held onto ideas I considered irrational.
This morning it occurred to me that I left something out. During that period of my life it was especially important that I lived among adults who believed deeply in respecting (and acting respectfully towards) all people. It happened that my parents and their closest friends (with whom I got along better than with my age peers) were Quakers. As Quakers, they believed that "there is that of God in every person." Even if a person seems bad or stupid, they treat that person respectfully (while oppsing nonviolently any bad or stupid behaviors that may be damaging to others or to society) because even that person contains a "divine spark."
One belief that was given me and made sense is the idea that no one person can know the whole Truth about reality. The Truth, if we could ever find it, would have to be put together from the diverse small-t truths contained within each life. When we reject any person, even if we find we need to do it to protect ourselves from their behavior, we also are cutting ourselves off from the unique truth hidden in the "divine" core of their life. This is something to lament. Any time we cannot sustain a respectful (mutual) relationship with anyone, we are reducing our own access to knowledge and understanding. Because even a "stupid" person knows something I do not and cannot know. Every person, even a "stupid" one, has a unique experience of the world and therefore learns something that I could, in turn, learn from him/her if we were able to relate constructively together.
The crucial thing, I think, is not that I was told these things but that the adults around me both believed them and modeled them. They showed me that people worthy of my respect treated other people (including peole I saw as "stupid") with respect. They didn't accept abuse or let bad behavior pass unchallenged. But the manner of their response (the way they resisted badness) expressed respect for the essence of the other person even as the bad behavior was rejected.
It may have been more important for me (as an AS kid) than for many of my peers that the adults around me were (and behaved like) adults. I wasn't able to "pick up on" subtleties and emotional subtexts. My relationship with the world was intellectual, and I valued sensible, rational, intellectually mature people. Predictable people. The framework of universal respect for human potential supported me through the periods of my life when it was hard for me to find anyone my own age with whom I could share what was important to me. And although I didn't turn out to be a deist, I continue to live according to the moral and ethical precepts I learned from my parents and their friends. This, I think, is what saved me from becoming a sneering elitist sunk in dissatisfaction with an imperfect world. :-)
Some parents get very upset when their child "stims," either because it "looks funny" (e.g., when the child flaps her hands or bobs her head or rocks) or because other children tease the stimming child. In some cases, the parents seem as upset about the "embarrassment" of having an "odd looking" child as they do about the fact that a child is being teased.
In response to one parent's message along these lines I wrote:
Children who stim do so because they need to. For many, it is the only way to feel anchored, to have some point of control in a sensorially (or attentionally) overwhelming situation. It is a way to cope with stress. It is a way to focus the attention (I never could pay attention in class unless I was "doodling," where doodling served the same function as stimming).
Therefore, the aim should be not to eliminate the behavior (because the behavior is necessary; it is serving a useful function), but to find a more socially-acceptable substitute, if possible.
If a substitute cannot be found immediately, it is important not to deprive the child of the stim. Again, that stim is serving a useful function. Don't kick away the crutch until you've found a substitute -- unless you want to see the kid fall on her/his face again and again.
Some children (and adults) learn to get the same results by manipulating a "worry stone" (small, smooth) in a pocket, unobtrusively. In some cases, it's possible to "take notes" (doodle) as an anchoring stim to enable the attention to function. My mother used to knit in meetings.
Above all, adults should take responsibility for making it clear that it is the children who "make fun" who are behaving badly, not the child who is made fun of.
Two on-the-spectrum adults wrote to report experiences where they had reacted badly (been over-stimulated) by rooms with all-white walls. I responded:
Interesting. When I first went to college (at age 17, totally undiagnosed, totally unprepared, and I didn't last long....), I at least had managed to write my way into getting one of the very few single dorm rooms. (If I'd been forced to share, I can see myself winding up with a psychiatric diagnosis really fast.) It was a small room, all white, and it felt to me like a cave. It was my refuge. Whether it was due to inertia or instinct I don't know, but I kept everything I had brought with me in the "closet" (a niche with no door). The result was that the "cave" remained all white, with no clothing or "decorations" breaking up the whiteness or adding stimulation. When I was in my "cave," I was able to "disappear in a sea of white." It was a relief to disappear. Immediately outside the door of the cave (and even more so outside the door of the dorm) were hordes of moving forms, sounds, smells, demands, confusions. Inside the cave, I effervesced into the walls and wasn't a body (source of confusing, often painful sensations) any more. For a while.
One reason I didn't last long at college was that I had a hard time keeping track of when I was supposed to emerge from my cave for class and meals. And sometimes even when I was aware of the time and the obligation, I just couldn't make myself go out.
It occurs to me that one big difference between my experience of white walls and those described by S and K is that I had control over the lighting (and there was no fluorescent).
Several parents of AS children mentioned that they had a hard time understanding why their kids were such "sore losers." I responded:
Reading your posts brought back memories that may have relevance to some other AS people.
When I was in first grade, a teacher had us all pretend to be owls. She told us that owls have huge eyes, so the way to pretend to be an owl was to open our eyes as wide as possible. The child with the biggest eyes would be most like an owl.
When I was not picked as the best owl, I felt totally betrayed. Why? The background is that the children in the class (in any class I was in until at least high school) were not completely real to me. This is a "mind blindness" issue, I assume. Because I was not able to imagine that each of them was a complete mental identity different from mine, they remained rather shadowy figures to me. I related most fully with those able to function according to my own "operating system," which was based on logic/intellect and therefore turned me away from age peers and towards adults.
More particularly, however, my surprise and sense of betrayal in the owl-eyes incident were due to the fact that I could feel that my eyes were incredibly huge! My interior reality over-rode anything and everything else. It was the only real reality, the dependable one, as far as I was concerned. When the teacher's choice violated what I knew to be true (in that interior reality, which I, being "mind blind," believed to be the only reality), I felt betrayed.
Similarly but much later, a new (just out of teaching school) teacher dared to give me a D on an exam in a high school history exam. Me! Who never got anything but As! I was becoming a "rebel" in political terms, but I was also a Quaker, a quiet, adult-oriented, intellectual kind of geek. So it was a huge surprise to everyone when I flipped out and shrieked and cried and raged right there in the classroom - and then all up and down the hall.
Again, my interior reality was the one that mattered (even then, when I had become more sophisticated in my relation to the social world than I had been in first grade), and a major contradiction to my expectations was experienced as a betrayal of that reality. It's not just that I was disappointed. I was sure I was right and the teacher was wrong. I was not someone who got a D. Period. Impossible. I always "aced" tests (because I was able to impress the teachers with my knowledge and my writing, even when I didn't know all the answers to the specific questions they asked), and if I didn't, it was the fault of the test.
In other words, I don't think it's just not wanting to lose. It's that when your inner world is where you live, the reality (what you experience) there is more "real" than the reality outside. I had made the best "owl eyes" and had "aced" that exam in my inner world. My experience of those events was that I had excelled. I could feel how well I'd done. But for some mean reason, the rest of the world would not accept the reality/validity of my experience of the events.
Learning to accept that other people write most of the script of life is a long-term challenge for those who are "mind blind."
People on the list were discussion the aggression they sometimes get from people who aren't comfortable thinking of "high functioning" (or AS) and "low functioning" autistics as being on the same continuum. Several people reported being rebuked for what was perceived as an attempt to equate "serious problems" with "minor difficulties." In a rambling and meditative mood, I responded:
I once posted something (can't remember what) on another list and got a sharp reposte from an AS/HFA adult who thought I was being too accepting of AS as a "perm anent disability." He spends a lot of time and energy working with autistic kids, trying to get them to transcend the limits NTs assume exist for them. It's true that if the adults around you when you are a kid are giving you the message that you are limited and imperfect, you are likely to internalize that message about yourself. And I can see that he is doing Good when he tries to help young people refuse to accept passively the limits other people try to put on their minds.
But it's also true that an AS/HFA person living in the current world is going to have some deficiencies (i.e., will not be perfectly tailored to meet the requirements of a world/society designed for NT minds) that will cause problems and may be disabilities. (That is, our "differences" may disable us, more or less, in one area or another, from performing "adequately" by societal standards.) Are we obliged not to talk about that reality unless we can prove that we meet certain requirements of pitifulness?
Until we get to the point where everyone truly views humans as collections of points on innumerable continua, I guess we will continue having these misunderstandings. I mean, my eye sight is on a continuum that goes from 20/20 to total blindness. But the fact that I cannot function without glasses is not seen as a disability because so many people use glasses and because the glasses do enable me to function adequately.
Is AS/HFA in any way comparable? Hmmmm. There is no "glasses" equivalent, I guess. Nothing external to ourselves will ever make us function "normally" by NT standards. Many AS/HRA people can learn to develop and employ an NT interface. Some can develop and employ an NT persona (or personae) that will enable them to "pass" as NT in some times and places. But we'll never be non-stigmatized/handicapped entirely until other people broaden their understanding of what is "okay" (if not, strictly speaking, "normal").
I have no idea whether "other people" in any numbers are capable of doing that.
Someone wrote about how hard she finds it to get rid of things. She is described as a "hoarder" because she likes things to stay the same. I wrote:
As some of you may remember, I've had some serious trouble with Nancy (the woman who helps me) when she has wanted to "improve" things in my house -- sometimes with little or no notice. Last week I finally got around to reading a New Yorker magazine from late December. The cover shows Santa Claus sitting in a big chair. The back of the chair is really high, and it has a face. The stuffing on each arm of the chair has a face. The tassels hanging from the edges of the chair have faces. The lamp has a face, the lamp shade has a face. Everything in the picture has a friendly little face that is turned toward Santa. As I looked at the picture, I realized that it shows my own situation very well. Everything in my house is something with which I have established a friendly relation. I do quarrel occasionally with one thing or another. But for the most part, we're friends. When Nancy comes along and wants to remove something, she is removing that friendly presence, wiping out that relationship.
I showed her the cover and expalined what it showed me, in the hope that it might help her understand.
An autistic woman wrote about her sense that when she was young, her naivete about sex protected her from possible sexual overtures (or worse). I responded:
When I was 15 or 16 years old, I spent quite a lot of time wandering. My mother had to work full-time (and look after my much younger brother the rest of the time), and that left me unsupervised. Looking back, I recognize that I did things that were dangerous. Like you, I decided it was naivete that saved me. Fully adult men used to attach themselves to me, for example, when I was wandering around center city (downtown) Philadelphia. Sometimes one of them went as far as touching me (putting a hand up my skirt, for instance), but it never went farther. The reason, I think, is not only my naivete but also my autistic lack of "signals."
As I understand it, most non-autistic people communicate in large part by non-verbal means. I have read about it and know in theory that it consists of gestures and tones of voice and body language, but my ability to connect that theoretical knowledge with anything real in the world is extremely limited. When I was a teenager, I hadn't even heard about it yet. That means I was unable to "read" the signals the potentially dangerous-to-me adults were emitting. And it also means that I failed to emit the signals they must have been expecting to feel emerging from me. I think my failure to respond as they expected kept them in doubt (or confusion) and made it harder for them to proceed with whatever behavior I might accidentally have provoked if my mind/body functioned in the NT manner by sending out automatic non-verbal messages in response to non-verbal messages emitted by other people.
Of course, I also was lucky. I didn't attract the attention of anyone whose will to do damage overrode his ability to recognize the "something strange" about me.
There was a discussion about how many of us ("high-functioning" autistic adults) had been a disappointment to our parents when we were children because we did not "stick with" any activity for long. I commented:
I think this may be related to the difference between those who "are" in large part what they do and those of us who simply are. That's a difference I've had to become aware of in order to understand some things about myself and why/how I tend to confuse other people. The purpose of doing many things is...well, not sure how to say it....
Okay, I'm going to lay out some over-generalizations here, simply because I can't think of any other way to get at what I'm trying to say. None of this is pointed at anyone (i.e., I do not mean to be "putting down" anyone or assigning anyone to a stereotype).
Some people "get into" learning/practicing/doing certain things because they see themselves becoming good and successful at those things. By becoming good and successful in that way, they will be becoming an identity in the social world, and becoming an identity in the social world is an important (possibly even crucially necessary) goal for them. The enjoyment they get from the chosen activity is likely to be generated in large part from the fact that doing the activity well helps them create/maintain an identity in the social world.
Other people enjoy learning/practicing/doing certain things because they enjoy learning/practicing/doing those things. They do not change their identity on the basis of what they do, and it may surprise them when/if other people start to relate to them on the basis of what they do.
Given that dfference (which I see, generally, as NTs [neurotypical, "normal" people] in the first case, ACs [Autistics and "Cousins," i.e., neurologically non-typical people] in the second), it is not surprising that the first group would tend to have a more long-term attachment to the chosen activity-of-success (because it provides the social identity they need). Whereas people in the second group might drop a successful activity at any time due to changing interests (and they can do so because, not feeling any need for a social identity, they don't need the activity to help them in that way).
A parent wrote that her young AS daughter had trouble (from her mother's POV, of course) distinguishing between things that are alive and things that are not alive. As a result, the child sometimes would resist the parent's attempts to get rid of objects (the example given was a wrapper that the child considered a friend). I responded:
In general (but keep in mind that I've never been in parent), I think it's okay for people to retain all objects (living or otherwise) with which they are able to maintain an ethical relationship. So if your daughter has the capacity to relate adequately with the wrapper (i.e., if she can give it the care it needs without causing problems for other beings), it might be just as well to stop trying to separate them. On the other hand, she will need to begin developing the ability to understand what such a relationship requires.
Relating (forming relationships) with objects is a good way to feel at home and to feel some measure of control over one's environment. It can become overwhelming quickly, though, when you have to make all such relationships ethical/caring ones. I am able to live with several hundred teddy bears (a good many of them made by me) because the amount of care they require is within the range of the amount of emotional and physical energy I can muster. If I tried to live with that many people or lizards or birds or green plants, I wouldn't last long. The people would erode me most quickly, but even the plants would become burdensome within a week.
I stubbornly resist changes in my environment because adjusting to change saps my mental energy (and my emotional energy, too). I think it's okay (necessary, in fact) to establish limits. Everyone has limits. If you live alone and you don't impose your own limits on "stuff," eventually you will get in trouble. You may get sick, you may cause a fire, you may get kicked out by your landlord; at the very least, you will run out of room, and, long before that (for most people), you will run out of the ability to relate adequately with the elements of your increasingly cluttered surroundings. If you live with other people, limits must be negotiated. Your "stuff" can't take precedence over other people's "stuff," nor over their health and comfort (unless you can negotiate trade-offs on comfort).
In other words, I am not sure it is important to establish 100% clear distinctions between "alive" and "not alive." Physicists have learned that such hard-and-fast boundaries don't exist, and the same is true in much of the world-as-seen-by-biologists.
Different "stuff" calls for different kinds of relationships with us. If I am relating to a bear who needs to eat and shit and get physical exercise, I need to be willing to respond to those needs. If I am relating to a teddy bear, I need to be willing to respond to that bear's need for protection from damp, shade from direct sunlight, and an occasional dusting. Both bears require attention and caring. If I am not willing and able to provide attention and caring, I should not try to keep either bear in my life. Same goes for a wrapper, in my opinion.
My bears also get love and provide companionship.
On a list not devoted to autism/AS, a member wrote that she recently discovered that she has ADD and felt as if yet another problem had been added to her burden. I wrote in response:
But of course, it's not something new. You've been you all your life. The knowledge about ADD simply gives you a new way to think about certain aspects of yourself and figure out (better) how to change strategies that don't work well for you (because they are strategies based on "normal psychology" without taking ADD into account). Now you are free from the straightjacket of "normality" and can craft your own strategies, based on the unique shape of your own mind, for dealing creatively with the rest of the world.
That's the value of adult diagnoses like ADD or AS for those whose childhoods passed before the information was available.
The parent of an AS child asked why her son never wanted to do his homework until the last minute. I responded:
I suspect there are many "etiologies" for procrastination. Someone I know who is totally undiagnosed but probably ADD simply cannot do anything (with very few exceptions) unless she is facing a deadline at very close quarters. She can't start to read a library book, for example, until the day before it is due.
In an AS person, the reason is more likely to be related to transitions and motivation. The only time it's easy for me to start doing something is when I truly want to do it (i.e., the motivation is entirely internal) and I feel good (not tired, not stressed, not anxious, etc.). Feeling anything in particular can be very distracting and prevent me from concentrating, even when the project at hand is one for which my internal motivation is strong.
In all other situations (including those where all that's missing is the quality of being entirely self-motivated rather than motivated partly or completely by something in the outside world), there is a "sill" over which I have to push myself before I can start. That takes energy. It's as if my brain is mobility impaired. It can't simply walk casually from one focus to another, it has to prepare, plan, and then propel itself into the new activity with an expenditure of muscle-energy.
Something about the AS "internal economy" (for most of us ASers) seems to have an inbuilt default setting for conservation of energy. We can learn to over-ride that setting (a learning that takes much longer than those around us like to imagine), and it can be over- ridden spontaneously by an uprush of internal motivation (as when we have a chance to focus on a topic of special interest). But for most of our young years, it can feel like a major production to move out of default and into the energy-expensive project of focusing on a project by which we are motivated externally. We therefore may tend to put off making the switch as long as possible.
I don't know whether that is your son's situation, but I'm sure it is a common experience for many AS peo ple. It's something I still have to struggle with at work almost every day. Sometimes I put off easy chores at work because just thinking about them makes me feel unbearably tired. (Lack of internal motivation can be so draining that I actually feel queasy when I try to force myself to focus on one of these tasks.) Only when enough time has passed that the chore has changed (by the passage of time) from mundane to near- critical can I summon up the motivation I need to get me going on it.
The parent of an AS child wrote that her son was very rule-oriented except when it came to his own behavior, where it was more a case of "anything goes." She could not understand this apparent contradiction. When several other parents wrote to thank me for the insight my response gave them, I decided to post it here. (Until then, I'd assumed I was pointing out something more or less obvious to all.) What I had written in response to the original parent's comment was:
What makes that not a contradiction is his POV. (Point of view) He has complete access to his own mind (as much as anyone does) and to how his mental world determines what he does. So there is a continuous stream of explanation going on inside him that supports whatever behavior he exhibits. I'm sure he always has a logical reason (though it may not seem logical to anyone but him :-) ) for what he does.
Other people, however, and especially children (who are less predictable than adults) are "closed books" to him. If they do not follow the rules, he has no way to predict how they will behave. It is important for AS people (esp. as children) to feel confident that the world will remain "safe," and that means it must be predictable. The failure of other people to behave as expected (i.e, their failure to follow the rules as we understand them) takes a lot of getting used to!
Perhaps a shorthand way to say this is: At this point, your son has learned to make new rules for his own behavior but he has not yet come to accept that other people are doing the same.
Sometimes it seems like I'll never be able to remember everything I know about myself. What I mean is, I have an insight (e.g., reading something causes me to realize soemthing about myself) and add that new bit of information to the general store of self-knowledge I have. But then in the course of daily life something happens. And do I automatically recall the relevant bits of all that accumulated knowledge? Alas, no.
For example. Earlier today I was corresponding with an internet friend. I had told her about the big anger I felt towards N when I came home and found she had substituted a new chair for one of the old chairs in my living room, and she responded by talking about her own experiences with anger and a particular technique she wants to use when trying to get her POV across to someone who isn't willing to hear her.
Not until I was writing back to her again did I suddenly remember something I learned about myself some time ago. Here is what I wrote to her:
One problem I have is that it takes me quite a while to notice and then identify my emotions. Usually I need to go off by myself for a while in order to do the noticing and identifying. The reason I was "able" to explode with immediate anger when I got home and discovered N's chair in the living room is that she wasn't there. If there's any person around, I am too busy "running my social interface" (maintaining my persona of non-autistic "normality") to have time/energy/mind available for searching out and analyzing my own emotions.
That's something I should try to explain to N. She wonders why I don't "stand up for myself" more consistently -- why I end up complaining after-the-fact that she has run right over me again. Well, at least one major piece of the reason is that my intellect and my emotions are not all-of-a-piece,the way hers are. She always knows what she's feeling. Her emotonal reactions are as instantaneously clear to her as her thoughts are. For me that's just not the case.
Someone asked about the differences between AS (Asperger's Syndrome) and HFA (high-functioning autism), initiating a discussion of the difficulties inherent in trying to define these categories.
I think the problem is that the actual experience of individuals will never fit neatly into any scheme of categorization. No matter how many of your friends fit into your understanding of a difference between AS and HFA, someone else always will come along who does not fit. Plus, it's all too easy, once we've bought into a particular categorization plan, to "trim" descriptions of people (unconsciously) in an effort to make them fit, so that we can preserve our intellectual structures.
It makes much more sense to say it's all autism. The differences are all individual, although obviously some people have more in common. For example, some autistics do not start to speak when their parents have been told it is the normal age for kids to start speaking, while other autistics do start speaking at a "normal" age (but may have atypical "prosody" or tone of voice). In the past, the non-early-speakers would be labeled HFA and the others AS. But I see no reason (based on the people I've "met" online) to believe that early-non-speaking is a sufficient predictor of a person's future. Some non-early-speakers go on to function in a way that parodies "normality" well enough that they will be given the "AS" (i.e., "mild autism") label, while some who did speak on a "normal" schedule will never "grow up" to fulfill the expectations held for them by parents/doctors who believe they aren't "really" autistic ("merely AS") because if they were "really autistic" they wouldn't have been speaking at the age of two.
Autistic individuals are individuals. Our lives cannot be reduced to neat categories. The challenge is to provide the support each person needs (from earliest childhood), not to craft categories of support and withhold support from anyone who can't prove his/her life looks like the list in the textbook.
This was my contribution to a discussion among autistic adults about self-injury behavior (SIB):
Twice in my life I deliberately smashed my glasses, and I consider that to be self-injuring behavior. I am extremely dependent on my glasses, simply cannot function without them. In a way, for me to sma sh my glasses is like making a suicide attempt. It is a physical way to say, "I need out [of here/this] now, even if the only way out is to accept non-being."
Both times, what was going on (as I remember, in a foggy way) was that people were trying to be nice and helpful to me. I needed help, but I couldn't take their presence and pressure. Because I was already overloaded (by the factors that put me in need of help), having people "aimed at me" (so to speak; that's how it felt) and pressing up against "my space" (even though not touching me physically) became literally unbearable. Thinking back on both episodes, I can see them as farce. My glasses are thick and very hard to smash. It's not something you can do in a second, probably not even in a minute. It takes a lot of whacking and plenty of perseveration. Also, part of the self-injury involved (besides being "blind" and feeling useless/vulnerable for several days while replacement lenses are made) is the monetary cost. Cutting myself (which I feel sure I'm not ever likely to do) would at least be cheaper, as long as it didn't require medical attention.
An adult autistic internet friend wrote about her suspicion that she and I owned some of our differences, particularly my greater self-acceptance, on the differences between our mothers. She had felt rejection from her mother on the basis of her autistic characteristics, whereas I had felt nothing but acceptance in my natal family. She asked what I thought of her theory, and I responded:
I think you're right. The downside of it is that I never had your impetus to succeed in various ways. I think my life has been much more at the mercy of alternating perseveration(s) and inertia than yours has. Not that you haven't had to struggle with inertia or with the near-mania of perseveration. But the point I'm trying to make is that at least you seem to have had a fairly clear understanding that there was a choice, there was something to struggle for, that there was a real world out there and that you could (with great difficulty) make a place for yourself there. You had "devils" (some of them loosed by your mother!) chasing you into "real life."
As a result, you have been a wife, a mother, a teacher, and those are all wonderful things to be. (They can be awful, too. But not in your case.) You have been much more a participant, I think, giving much more back to the world than I have. I'm not "putting myself down" here, by the way. Simply making observations. (Trusting you will understand that, I won't bother to write out the list of "Jane's good points," which would take much too long. ;-) )
It's been comparatively easy, I think, for me (as compared with many autistics) to "give up on" things that it's hard to achieve while accepting one's autistic self. Why was it comparatively easier for me? Because I am more self-accepting, and therefore more easily content with a life that excludes much of what makes an NT feel okay about her/his life.
Hmmmm. Have we discovered the roots of what seems to some
people my most puzzling trait? To wit: my total, complete,
100 percent lack of competitive spirit. Nothing to prove, so no
interest in "winning." If I were less self-accepting, maybe
I'd have gone on to become the crusading social-change
lawyer predicted for me as a teen on the basis of my "intelligence."
The following day, I added:
The following day, I added:
Today I realized my meaning might be more clear if I added:
If "the world" (especially your peers) and your mother both tell you you are deficient, not up to their standards, and you believe them, then you have lots of motivation for learning how to make yourself able to "pass" as "okay" at least some of the time.
But if you start out (as I did) with a family that tells you you're just fine and warns you that the world is seriously flawed, then when "the world" rejects you, you (or at least I) tend to think, "Well, there's something wrong with the world all right." And meanwhile, your self-esteem remains intact.
Additional advantages I had: My parents (and their friends) had a vision of the world shaped by Quakerism. They saw it as a major problem in the world that people tend to under-value and disrespect others, espcially those who are seen as "different." So I was "prepped" to understand rejection (of me) as a form of social neurosis rather than a true valuation of my worth.
It helped that my parents and their friends were accepting of my "little professor" ways and my preference for talking with them rather than with age peers.
Plus, my family moved every two years while I was growing up. Being perpetually new (or almost new) provided an adequate excuse for why I never made friends, never put down roots, never knew anyone's name, and in general lived in my world instead of my peers' world.
Someone asked what supports we ("high-functioning" autistics) would want to have if we could have whatever we wanted. I responded:
What I often feel most in need of is someone who is able to understand (and accommodate) my "stupid areas." There are things that I am stupid about, need help with, and am not likely to learn (meaning: I don't need a teacher who expects me to get "smarter" in my "stupid areas," I need someone to help me muddle through them again and again). And the helper has to be able to accept/understand my localized stupidity without losing track of the intelligence (my intelligence) that surrounds the stupid areas. If a potential helper gives me a sense that s/he is feeling superior to me (is being condescending) in reaction to my stupid areas, s/he won't be my helper for long. I do not take my troubles to people like that, so they are little use to me.
Hmmm. That last part sounds like "pride," I suspect. From my point of view, it's more an extension of logic, though. A person who behaves condescendingly to me is not truly open to "seeing" (perceiving) me-as-I-am. And why would I put my trust in someone who is prejudiced against me, especially in someone who isn't admitting to that prejudice?
In a discussion about anxiety, an AS woman wrote that she knew it was useless to worry about upcoming events or changes in her life, but she couldn't help feeling anxious anyway. I wrote:
I know what you mean! One of my big problems is the way I habitually "rehearse" everything in advance. It would be okay if all I did was practice what I wanted to do/say myself. The trouble comes from the fact that I also make up parts for everyone else!
For example, I have to fight very hard to stop myself from creating complete scenes (dialogue, mostly) between me and [a service person with whom I has having a series of unsatisfactory contacts]. It's not that I don't know t he difference between reality (when it happens) and my own fantasy world about what reality might turn out to be like. The problem is that when I let myself "indulge" in making up those scenes, I fill myself up with all the emotions that go along with the dialogue. And because I am most anxious about his doing/saying things that will make me angry, all my dialogues end up with me very angry at him!
It's so tempting to "rehearse" in that way. It seems like a natural thing for me to do, like it's just the way my brain works on its own. But I know I have to try to stop doing it. My brain probably is trying to control the future (and thus lessen anxiety) by working through what might happen. But since that kind of "practice" gives me only an illusion of control and in the process fills me full of adrenalin and anxiety, it's obviously something I've got to avoid as much as I can.
Two autistic adults started a discussion about the social language continually used by NT (neuro-typical; i.e., non-autistic) people. Examples include ìHow are you?î and ìHappy Holidays!î One man noted that this type of language use is believed to have evolved in human pre-history, before language had developed to the point of coding and conveying information about the world (e.g., ìI saw some gazelle over thereî or ìIs today payday?î). This man noted that it is very hard for him to participate in this kind of social language. Even when he does have positive feelings about someone, he finds it irksome to perform verbal behaviors that are not natural to him. A second autistic man agreed, adding that, in his view, this kind of language-without-substantive-content is silly. On the other hand, he said, when he notices someone doing it well and compliments that personís skill, his compliment often is not well received. He resented being penalized for not participating in the ongoing routines of social interchange but asked for strategies others might have developed in this regard.
I think you are not being completely logical here, nor are you integrating [the previous posterís] points into your response. (That's not a criticism, simply an observation.) As he wrote, and as you agree, that level of communication is something NTs do automatically. It is not performed as a conscious decision, it is the outward expression of pre-conscious neural development that has been wired into the (NT) human brain since pre-history.
It is not "silly" for NTs, nor is it "empty." For them, it plays an important role in social interaction -- and social interaction is ubiquitous in most NT lives, so this kind of communication is like breathing for them. They do it all the time and rely on having it occur automatically. It supports them in crucial ways, makes their world meaningful and comprehensible for them. There is no need to compliment them on it, any more than you compliment them on breathing. (Though it's true that some NTs are especially good at performing social language as a form of "outreach," where they layer it onto the basic, unconscious level in order to achieve a specific purpose -- e.g., being attractive as a job candidate, or making a new-comer feel comfortable.)
I think the best solution for autistics is to grow up with two older sisters who are normal (unique but socially adept). That way, you get to spend a lot of time watching good models at work, and you eventually find yourself imitating them in tone of voice. It helps. But, alas, it's too late for most autistics who didn't have my good luck.
How about a compromise? We will ask the NTs around us to understand our difference in this regard. We will ask them to remember that when we do not send out the expected "signals" (non-verbal communication or the routine responses to their verbalized non-verbal communication), they should assume our intentions are benign. If they need to know more about our state of mind at any point, they can ask and we will be patient in trying to reassure them.
In exchange, we will try to understand and tolerate the constant chirp of NT-to-NT communication that seems meaningless/useless to us. Pretend they are whales who need to echolocate constantly. Since we are not whales, the noises mean nothing to us and may even be irritating at times. That's what earplugs are for, I guess.
At work, I have discovered that a good-humored "You, too!" will cover a multitude of situations. It is my attempt to imitate a whale. Although my inevitable instinct, when I realize someone is talking to me, is to try to figure out what that person is saying and then formulate an appropriate response, I have come to accept that it is easier for everyone if I repress my instincts at times. Nobody really wants me to tell them the answer when they say, "How are you?" Nobody wants to hear my opinion about either religion or commercialization when they say, "Happy Holidays!" And since nobody is really listening to these ritually-voiced forms of verbalized non-verbal communication, it is fine to respond "Fine!" or "You, too!" to almost anything, as long as you say it so you sound friendly and/or happy.
That's my take on the subject, anyway.
A parent wrote in distress about her teenage AS son. He was unable to accept that his friend enjoyed a comedy film where the humor depended on teasing and treating people badly. If the son continued to obsess on the logical contradiction of a "good" person liking a "bad" movie, he was likely to ruin the friendship and lose his friend.
This is a hard one. In the long term, your son probably will learn to accept that fact that, as another list member said, people are different. I was astonished when I learned (in my 40s) that a man I liked and admired has no feeling at all for non-human animals. For him, they are in the same category as non-sentient objects. I was horrified at first, because non-human animals are so important to me. But by that time in my life, I was mature enough (finally!) to be able to accept that even a good person could be that different.
In the meantime, would it help to talk (if you haven't already) about the difference most people recognize between "reality" and "fiction" (including movies)? I have quite a few categories of things that I do not want to see in movies simply because this distinction (between "reality" and "fiction") is not as complete for me as it seems to be for the majority. For example, I refuse to watch war movies, because I think it is immoral for war to be "aesthetic" (which is what the film-makers want it to be when it's in a movie). For many people, watching a war movie can be well within the scope of moral decency, however, because they are able to make a complete distincton between fiction and reality. They can watch a graceful "dying fall" on the screen and not feel they are getting aesthetic pleasure from murder. I can't do that.
It sounds to me as if your son is in the same position as I am, perhaps. When he sees people acting badly, he sees bad behavior, whether it's in a movie or in "real life." He hasn't yet come to accept that for most people, what is in a movie isn't real and "doesn't count."
Maybe he eventually will be the one to write the essay that explains as clearl y as I want it explained why our species would be better off if we all refused to "aestheticize" bad behavior! But that's just my personal prejudice speaking, of course. :-)
This afternoon I went for a walk with Nancy. She has been very focused on her garden for the last month or so and we haven't spent much time together. When I don't spend much time with Nancy, that means I'm not spending much time with anyone. I see people at work, but in a limited way. Generally, Nancy is the only person I talk to much in person.
I have noticed many times in the past that if I don't talk for a day (or more), it's harder for me to talk when I start talking again. Today was an especially awkward case. Although I had "talked" in a limited way while Nancy drove us to the place where we were starting our walk, it was not until we were getting out of the car that I reached the point of being able to generate speech/topics of my own (as opposed to responding to what Nancy said).
I had been wanting to fill Nancy in on my experience at _____ last Monday. (If I don't keep her up to date on my life, the events/experiences accumulate to the point where I can't think about telling her things without feeling overwhelmed.) So I "girded my loins" (gathered my energy) and embarked on the story. It is a rather complicated tale to relate, because it has a lot of characters. When I was a couple of minutes into it, Nancy stopped me and said, "I got distracted and missed the last part of what you said. Go back a couple of sentences."
But I couldn't! I was like a balloon when all of the air has been let out. Suddenly, I had zero energy for talking. I couldn't even remember why I'd ever wanted to talk, to tell Nancy anything. None of it seemed to matter. None of it made any sense when put into words. And I had no idea how to go about reconstructing and articulating "the last part" of what I'd said.
When I realized I couldn't react properly to Nancy's request, I tried to just stop (stop talking) and say it didn't matter. "Never mind." That made her angry, though. Much later, I realized that she thought I was punishing her, retaliating for her lapse of attention. But that wasn't it. It had nothing to do with her, it was just something that happened inside me that cut off my ability to tell the story, to put the words together and speak them.
She didn't understand that at all, and I couldn't seem to explain it at all. So after about ten minutes of her getting angrier, I finally managed to go on and say more about _____. Not what I'd wanted to say when I'd first started out, but something. Enough to satisfy her (to make her feel she wasn't being punished).
One reason I do try to tell Nancy about things in my life is that having her know about me keeps me from feeling like I don't exist. But the price for that can be high at times. It would be so much easier in some ways if I never had to try to communicate with anyone in person. But I know that would be dangerous for me.
An adult autistic expressed pain that yet another attempt at friendship had failed. She thought she had found a woman with whom she could enjoy walking (for excercize) and that walking together would form the basis for friendship. After a few contacts of this sort, the other (NT) woman became hard to get hold of, evasive, and generally gave indirect indications that she was not intereted.
Here comes what I always say, every time this topic comes up: The only way for me (and, I suspect, many other AS/HFA people) to make friends is by being involved in working with other people on a project of mutual interest. It has to be a long-term project that brings people together again and again and again over a long time. And it has to be enough work that it remains the focus for everybody. And everybody has to really care about it.
Under those conditions, people stay involved because they care about what they/we are doing. And they have something to focus on other than my lacks and mistakes in social interaction. And, over time, they gradually get to appreciate my mind and abilities, while at the same time they are becoming used to (and less bothered by) my "oddities." Their commitment to the project sort of carries over to me, so that they end up feeling connected to me through feeling connected to the project. Plus, they have some investment in perceiving me as "okay" because I am "like them" in being so committed to the project.
I have no idea how the parent of a young child could be part of such a working-group. But I suspect never the less that it is the only way to make a friend. Walking is something to do, but it's not much of a focus. You still have to talk about something (other than walking), and there is no strong non-you focus for the other person(s), no chance for you to "shine" in contributing to a project, etc., etc., etc.
Several adult autistics were discussing "empathy." One person said that empathy is a learned skill, a matter of learning to make a "reasonable guess" about what another person is feeling, and that autistics (despite what the experts say) have no deficit in this area. Another person maintained that many or most autistics do differ substantially in this area, both in that we learn to recognize the feelings of others (and the importance of the feelings of others) much more slowly and in that, for many of us, the response remains unemotional except with respect to the few people with whom we feel most closely related.
I had stated my belief that my form of empathy relies on principle, rather than emotion. Because my world view is based on moral and ethical standards, I am distressed by injustice. As the discussion proceeded, I wrote the following, in response to the person who said that empathy is something learned by non-autistics and autistics alike:
I think you are leaving out an element of empathy that may not be a necessary aspect of the definition of the word but definitely is an important part of the concept as it is used in daily life.
Empathy is supposed to produce an emotional response in the one feeling it. This emotional response, ideally, occurs with no conscious process of "reasonable guess" or anything like that. An "empath" (an especially empathetic person) is one who "picks up on" the emotions of others and immediately feels them her/himself. Those who are only ordinarily empathetic are expected to feel in their own "hearts" the emotions of those with whom they are experiencing empathy. That is why people who are empathetic will cry with people who are sad, for example.
I am not saying that this is the dictionary definition of empathy, but it is the way the word is used. It is how the word is used even by those who study autistics, as far as I can tell. When an autistic explains her/his form of empathy, s/he is seen as "robotic" (i.e., using reason/logic rather than operating on the basis of "pure" emotional response).
In other words, many autistics care deeply about (some) other people (though it may take many of them longer to learn how to experience and/or express this than it takes for non-autistic people), and many autistics care deeply about seeing justice/fairness done to everyone. There are some autistics (perhaps enough to constitute a sub-section) who are extremely sensitive to other people's emotions -- to the extent that they cannot stand to be around people much without being overwhelmed. But the way the connection-between-self-and-others works in autism tends to operate differently in autistics than in non-autistics. That is why the "experts" continue to diagnose us as "lacking in empathy." They are unable to see our caring-about as empathy because we use some other circuitry to experience our feelings of caring and connection.
To deny the difference seems odd to me. It is possible to insist that we (autistics) are capable of caring (it's demonstrably true, after all) without ignoring our differences from the NT majority.
An adult wrote to an online forum listing a variety of his characteristics and asked whether the accumulation sounding like AS (Asperger's Syndrome) or HFA (High-Functioning Autism).
It sounds like autism.
There is no definition of AS that works for everybody, unless you accept the "HFA without significant language-delay" definition. And if you do, you're stuck with the fact that there is incredible diversity among those who do and don't fit that definition of AS. Some people who had "no significant language delay" as children, as adults "look HFA." While some who did have "significant langguage-delay" as children. as adults "look AS."
It all gets very subjective. Not to mention the fact that a person may be "HFA" one day and "AS" the next, or "HFA" according to one "expert" and "AS" according to another. The way we function may change markedly over time, may seesaw up and down, and is likely to be affected as much by our surroundings as by what's inside.
An adult autistic wrote to an online group asking why it was that attending a social event was so exhausting. I responded:
I don't have the final answer on that, but for me a large part of what makes it exhausting is a combination of sensory overload and not knowing what to do. Each of those has several aspects, and the two sets of aspects intersect and re-enforce (worsen) each other.
Being in an unfamiliar place with a group of unfamiliar people (i.e., worst case scenario), my brain is skittering around trying to keep track of the billions of separate sensory "inputs." NTs, I understand, perceive more en masse. They "see the big picture" and don't bother with details. My brain isn't capable of that. Either it takes in everything (exhausting!) or it shuts down. That's one reason why I (and many other auties) prefer to spend a lot of time at home. Here at home, I have almost all the "inputs" catalogued already, so they don't overwhelm me.
Simultaneous with the exhausting brain overload described above, a social situation requires that we participate at least to the degree of holding our bodies in a certain way and moving from place to place as the situation dictates. We have to keep alert for clues (hidden from us but clear to NTs) about what is expected (trying to analyze invisible data is exhausting in itself), and then we have to try to "program" our bodies and faces to comply (in a very short time span). Usually there's also some "attention signaling" required, e.g., looking at other people who are talking, making it look as if we are following the flow of conversation (even though we may not be able to hear/ understand it all). The body mechanics that we may be unconscious of at home on our own suddenly have to be consciously initiated and performed and controlled. Exhausting!
Plus, there is the anxiety of not knowing what anyone is going to do/say, whether we will be able to comprehend what is said, whether we will know how to react "appropriately," etc. I always feel "surrounded" in social situations, even when I manage to get my back against a wall.
That's some of what I understand about what makes social situations hard for me, anyway.
I posted to an online group of adult autistics:
Just in case it might be interesting to somebody, I am going to paste in below part of a letter I wrote recently to my friend Nancy, attempting to explain to her why I had been so "short" with her the last few times she'd tried to talk to me. It came after a period of 2-3 weeks when she had been too busy elsewhere to make time for me.
letter excerpt begins:
I'm sorry I've been snarky lately. There's a dynamic involved over which I have limited control. When I have less than a minimum amount of interpersonal contact, I "lose the knack" and find it very hard to participate in "normal" relations again. It's as if a door has closed, a very heavy door that I can open only slowly and with great effort.
Ordinarily, you are the only person (internet excepted) with whom I have interpersonal contact on a regular basis. The people I talk to at work get mostly "scripts" from me, unless they are talking to me about a specific work project. When the talk is that focused, I usually have no trouble with it (unless I am very tired).
Talking un-scripted is different. It takes more energy, for one thing, and I can do it satisfactorily only with the few people I know well enough. With those few people, there is a pre-existing basis for conversation, a grounding that keeps me from having to re-create myself for every conversation. There are a few people (e.g., X) with whom I can enjoy conversing even though I don't see them regularly. I need time to prepare for such interactions, though, and they are exhausting. The time I visited X when I went back east to visit my aunt and uncle was a total disaster. Because the trip itself (the logistics) was so consuming, I had not prepared myself at all for talking with X. The result was that I "had nothing to say." The door had closed. I knew she was disturbed by the way I was behaving (or rather, by what I wasn't doing: talking, interacting, being the Janey she thought she knew), but I couldn't do a damn thing about it. Having dinner with Y requires mental preparation (getting myself ready to talk), and I'm always exhausted after two hours. Talking with Z is easier because she can fill any amount of time on her own and requires very little of me.
When you and I are talking to one another on a very regular basis, I seem able to operate as if the conversation is on-going. There is not so much break that my "talking machine" shuts down. When there are longer gaps, however, I "lose track." I feel (and it is a very strong feeling, stronger than my ability to rationalize it away) that I have to go back to where we left off and start from there. Because so much has happened (not necessarily things that I need to talk about, but the minute details of every day are there in my memory, and I have to work at identifying and prying out the limited number that are worth talking about), I feel overwhelmed at the prospect of initiating a conversation.
There are times (when the gap is long, or when I'm feeling irritated) when
it's not just talking that is the problem. My whole mind (or rather, the
whole section of my mind that deals with/relates to the outside world) has
become focused elsewhere than on my relationship with you. At those times,
it is hard to differentiate you (except in strictly nominative,
intellectual terms) from a stranger who is intruding into my life. (And as
you know, I am very selfish about giving up my time.)
---------end of letter excerpt
A member of the online group suggested that it might be easier for me if I asked Nancy to allow me to perseverate (talk uninterrupted on a topic of interest to me) for a while before embarking on "normal" conversation.
Actually, for me it works better the other way around. If she is willing to talk for the first half hour without getting anything from me but grunts and maybe a yes or no, then I gradually find my voice machine loosening up (or warming up) enough that I can start to engage in the conversation more fully.
I think Nancy did understand much of what I was trying to convey. She may not understand what it feels like or exactly why it happens, but she accepts my description as being what is real for me and is willing to help me work around it. As I think I may have mentined before, she is finding the book Women from Another Planet very helpful in increasing her comprehension of AS.
A middle-aged autistic wrote in about her recent meltdown. When another (younger) woman suggested hormones might be behind it, I responded:
I think women our age [mine and the original poster's] are exempt from the hormonally inspired mood swings. (Can't say as I ever noticed any regularity to my mood changes even when I was young, come to that.)
No, I suspect [the original poster] may be like me in this regard. For me, when I get too much done (i.e., when I'm doing a lot more than I usually do), it's like the doing revs me up. Like one of those little cars that you rev up by repeatedly running it in little strokes against the floor. The energy accumulates inside and turns acidic, eating its way back out, producing absurd bursts of self-hatred and rage.
"Acting out" seems to be the only way to externalize that energy. If we could find some way to do it other than breaking our glasses, tearing our hair, etc., that would be nice.
Someone who had read some of my essays asked me whether I believe NT social communication is inherently competitive. I responded:
I don't know, really, I just wrote about how things look to me. For example: took me a while, but I finally figured out something that was going on when my co-workers and I had our little weekly meetings. The others made sure to mention their own "credentials" (whether in the form of knowledge or experience) whenever the others did. As if trying to maintain parity. That seems to me to be one normal function of NT conversation. NTs probably don't even notice it's going on, ordinarily. It's automatic.
But it's not automatic for me. After I spent that little bit of time in jail, I gave a copy of my writing about it to X. She was very complimentary and started telling me I should submit it somewhere. The way she was talking, you'd think it was the first thing I'd ever written. If I were NT, no doubt she would know all about the things I've written that have been published in the past. I would have mentioned them naturally, automatically, as part of establishing my identify within my relationship with her.
But I don't operate that way. My interactions with most people (including X) don't involve me on an NT social level. It's not that I don't like her (in fact, I do like her) or that I prefer that she not know about my life. It's just that...nothing in me "cues" me to do that NT socializing that consists of building up a picture of one's self for the other person. In many contexts, I suppose, NTs are not engaging in this mutual display as a form of serious competition. They are not trying to "top" one another; they are trying to build a relationship of social equals. But the NT process of doing that looks from the outside (where I am) almost indistinguishable from the competitive kind of status talk.
I tend to expect people to accept me, period, without giving them any "reason" (such as running through a list of my accomplishments). If I were NT, I wouldn't even think of it that way, because creating and maintaining relationships would be rewarding for me in a different way (and much less draining, in most cases). I would see such conversations as opportunities rather than games or contests from which I recoil.
An adult autistic wrote how incredible it had seened to her when young that her age peers cared enough about superficial things like clothes to make themselves vulnerable to harrassment/teashing by bullies.
I was like you in this respect. One of my nieces was a good example of an NT young person going through this kind of peer bullying. She was (and is) a very intelligent person, with interests and ideas of her own. And yet, she could not help caring what her peers thought of her. When she talked about it with her mother, she would say (I'm paraphrasing), "I know it's stupid, and I won't care at all about it in a few years; but right now, I do care." She cared whether her clothes were perceived as "cool" (or whatever term was in use at her school), for example.
I was very impressed by her example, because I'd always assumed caring about peer perceptions was "stupid." This niece persuaded me (by her example) that even intelligent people with real concerns in their minds can't help being upset by peer pressure if they are working with (i.e., born with) a particular NT wiring.
Hmmm. Maybe this is also an example of why my wiring makes me seem "arrogant" and "judgemental" to some people. I see that I have made assumptions about what "concerns" are "valid" (non-stupid) and which are not. From my point of view, caring about clothes is stupid but caring about injustice is not. Those who can't help caring about clot hes probably feel "put down" by my assumptions. :-/
An adult autistic expressed puzzlement about the way some people react with anger when told they have hurt one's feelings. I responded:
I was thinking about this post last night, hours after first reading it, trying to figure out how such a dynamic might evolve. All I could come up with was that the other party might be feeling along these lines:
"By telling me that I am hurting you, you are telling me that I am a bad person, the kind of (bad) person who would do something that hurt you. It hurts my feelings to know that you think I am a bad person. If you believed I was a good person, you would assume that what I do is well-intentioned, and therefore you would take responsibility for whatever unintended side-effects occur. But you do not take that responsibility. Instead, you blame me for your bad feelings and try to make me responsible for them by defining me as a bad person because if you weren't thinking of me as a bad person, you wouldn't tell me I was hurting you."
No logic there at all, and it also violates several fairly obvious truths about human operating systems. But I think I can imagine someone (especially perhaps an NT who lives inside a cloud of mutually reinforcing relationships based on emotional content) getting his/her mind wound up into such a self-justifying mess in order to avoid having to examine his/her own behavior.
The "escape hatch" outlined above has some kinship, I think, with the social habit of blaming "unrest" on those who resist injustice rather than on those who have institutionalized the injustice into a nice, quiet, acceptable form of oppression.
[Further in the same thread, I had occasion to remark that if we don't tell one another when we've done something hurtful or even wrong, how can any of us be expected to learn from our mistakes. Sometimes being "nice" -- e.g., hiding one's hurt rather than expressing it -- condemns a friend to ignorance about something important. The alternative is to provide an opportunity for learning and growth by being willing to address the problem openly.]
A parent wrote that after a good half-year in a specially structured pre-school program, her son was likely to lose services for the next school year because he had so few problems in pre-school. Her son had been diagnosed with "mild AS."
It's probably a good idea to repeat regularly the reminder that even "mild" AS (whatever that is) is pervasive. Changes for the better that are the result of improved circumstances (more AS-friendly circumstances, as in your son's case), do not mean AS is "going away" or "getting less," or anything like that. It is a pervasive, life-long way of being. Your son will learn to cope better with the NT world as he matures, but we're talking 'over the course of decades' here, not after a year of pre-school (as you know, but the school may need to be reminded).
A parent wrote in about an autistic child who was having trouble with math and, as a consequence, refusing to do homework. Was this rebellious behavior, or was it a learning issue that should be addressed?
You've given a good description of the problem (as far as one can tell from so far away), but it's still impossible for any of us to be as knowledgeable about the situation as you are. Obviously. And in my case, since I've never been a parent, it's likely that whatever I say may be unrealistic. There. I've provided some grains of salt to be taken with my comments.
Sounds like your son is running into a specific learning problem (whether it amounts to a "learning disability," I don't know). I had the same experience with math as I moved from middle to high school. (Not to mention the meltdowns I had in elementary school, come to think of it!)
From my own experience I can report that when one is used to having learning happen more or less unconsciously (perhaps as unconsciously as NT kids "pick up on" social stuff?), to run head-first into a problem where the learning simply does not happen...that is extraordinarily icky and frustrating in the way it feels. Suddenly, you lose faith in yourself. Because suddenly you realize (on some level, though you can't put it into words) that you don't know why the learning does happen when it does. It just seemed so normal that you've taken it for granted, but now it "doesn't work" anymore. Or not for this one problem area. And it's like your brain is broken. If your child has the perfectionist streak so common in auties, he'll find the combination of pressure to perform and inability to "think" (in the required manner) especially frustrating.
I got no significant help when I was in this situation. The teachers sort of colluded tacitly to let me slip by. These days, parents of autie kids seem to be turning to computer-based learning aids. Parents on the OASIS maelstrom list (see http://www.consultmac.com/AS/ for info) have posted about the various math-aids they've found that worked for their child's particular way of learning.
One element that is necessary, whatever method one is using, is repetition. Repetition in the manner that is not helpful for your child may only compound the problem, so it is necessary to find the method that suits his learning style before the repetition begins.
Someone asked why I am asexual. I responded:
I don't know. My speculation: there are parts of me that lie dormant until "called up" by some outside influence. For the most part, I am "blind" to those outside influences. I never notice when someone is flirting with me, for example. So I miss all the cues that might act as prompts to bring my sexuality "online." Unprompted, I don't notice whatever spontaneous sexuality I may have.
That's part of it. Another part is my experience. When I have engaged in sexual relations with other people, the result has always included failure on my part to perform "adequately" in the social realm. (Sexually, I seem to be okay. On occasion, I've even been told I've got fewer "hangups" about sex itself than many/most people do.) Sex isn't something that occurs to me as a positive option except when someone I like and trust suggests it. Since I'm basically asocial, I don't have a lot of people in my life/history who get to that point. (Seems like a lot to me, but it's much fewer people than "normal," apparently.) Everyone who' s ever been in that position (who has become someone I like/trust and then has suggested sex) has also wanted to "move the relationship to a new level" because of adding sex. The "new level" is where I don't perform well at all. My forms of feeling and expressing love are deemed inadequate (or not real, even), and the forms of feeling and expressing love that are poured on me (as a kind of challenge, it feels like, trying to evoke an "appropriate" response from me) from my POV "smell" a lot like sentimentality and melodrama.
Since adding sex to a friendship has always resulted in the loss of what I value most about my most precious friendships, I have experienced what amounts to "aversive training" not to make sex any kind of priority in my life. (Is "aversive training" the right phrase? I mean the kind of training that uses aversives to "train out" or extinguish "unwanted behaviors.")
I just went back and read the Snip called Dating [sixth down in the middle column of the index at the top of this page]. At that point in my life, I was not self-steering socially or sexually. Took me a decade or so to begin to figure out that I could say No. And then another decade or two to figure out that I am better off if I do (say No) because sex leads to a kind of relationship that doesn't work for me. In Women From Another Planet, I described briefly my two serious attempts to be part of a couple (where "couple" implies lovers as well as house-mates with a sense of commitment to one another).
The topic of a child's refusal to obey the parent's instructions came up. I responded:
"Clean your room" is much too vague for the majority of autistics. A better approach is (starting when everyone is calm) to negotiate through a series of steps. Then take one at a time, perhaps one per day. And when I say "negotiate," I do mean negotiate. Many of us have reasons for needing things around us to stay as they are, so it is asking a lot (more than most people realize) to ask us to make changes.
In calm mode, it should be possible to explain why it is necessary to have his room look a certain way. Perhaps it doesn't have to look "pristine." A minimum level of acceptable disorder could be negotiated.
Then discuss how to achieve each step in the change in a way that least disrupts the comfort and reassurance he gets from having his room be the way it is. With some children (perhaps especially younger ones), it may help to "model" the behavior. Say what needs to be done and start doing it, encouraging the child to do it, too.
My mother was still doing things this step-by-step way with me when I was in my late 20s. Not because I was defiant or sullen. I was neither. But because she understood that I needed extra help in taking on motivation from outside, extra structure in planning/organizing step-by-step ways to approach tasks (giving me all steps at once was too overwhelming and drained me of will to attempt even step one), and help in foreseeing past the disagreeable focus/energy shift from "being me" to "being me doing task X." Being encouraged to do one thing, for a clear reason, for a specific period of time, with a reminder that at the end of that time I would be able to do something I wanted to do..... Sounds like a lot of work for her, doesn't it? But it succeeded, in my case.
A discussion about "regression" led me to post the following thoughts on some learning difficulties of my own:
...I never thought of that as regression. Sometimes I think of it as having "stupid areas" (i.e., there are things I cannot learn unless I learn them again and again over the course of either years or decades, depending, and some things I have not yet lived long enough to be able to learn long enough to learn). And sometimes I think of it as just a difference in learning style. For example, there are some things I can't learn unless I am able to (do it often enough that I can) learn it "through my body." Even math. I have to be able to write things down in the learned way, no shortcuts. Even if I am using a calculator, I have to write the numbers down in the learned way before I will know what to punch into the calculator.
Learning to use a computer was another instance where I had to be taught again and again until my body learned how. I was lucky I had a very patient co-worker at that point. She had to show me again and again how to turn the damned thing on. And then she had to show me again and again (and again and again) how to get from "turned on computer" to "turned on computer that has something I recognize on the screen." (This was back in the days of DOS.) And then, again and again, how to get from something-I-recognize-on-the-screen to able-to-make-something-happen.
If I am interrupted in the process of "learning with the body," I have to start all over again. Thus, a break in my repetition (and in being shown/taught what I need to know in order to make the repetition possible) will return me to zero as far as learning that thing goes.
It can be an incredibly frustrating experience (for me, "from the inside"), and sometimes my ability to want to pick up the body-learning chore again disappears because it just seems like too much.
Another member of an online group mentioned the way our beliefs influence what and how we see the world. That comment reminded me of this:
A few days ago, I finally figured out something that has been puzzling me since I was eight years old. My family lived in a small northern-Illinois town at that point; it was on its way from being a farm-community center to being a suburb of Chicago. I spent a lot of time wandering (on foot or on bicycle) on my own all around and beyond the town. One summer day, I happened upon a small factory or workshop where painted tiles were made (tiles such as could be used to tile a bathroom wall or add a decorative frieze on the kitchen wall above the sink). One style of tile had a simple painting of a rabbit on it.
Non-human animals have always been the center of my inner life. I fell in love with those rabbits and spent a long time picking out the one tile with the "best" (meaning, the one who "spoke to me" most strongly) rabbit so I could buy it as a gift for my mother. (I earned money in those days by gathering up empty bottles and returning them for the nickel-back deposit.)
When I presented the rabbit tile to my mother, she responded with her usual graciousness. I was disturbed a few days later, however, to find that she was using the tile as a trivet (a trivet is a tile or fabric mat on which a hot pan or dish is placed so that the hot pan/dish will not injure the surface of the table). All through the years since then (I am 54 now), it has puzzled me how she could have u sed the rabbit tile like that.
My revelation a few days ago was: To my mother the rabbit tile was a tile (with a rabbit painted on it). It was an object that either was useless junk or could be put to some use. For me, the rabbit tile was the rabbit (which happened to exist thanks to the tile). Rabbits are not objects to be used. They are....rabbits. Lives. Beings. Fellow creatures (like me). Moreover, they are among the lives that are dependably happiness-inducing -- as compared to humans, who are not anywhere near that dependably benign (despite what may be the human's best intentions).
It didn't occur to me to talk to my mother about this. Partly because it literally didn't occur to me, and partly because I hadn't realized at that point (and wouldn't for about 15 years) that my mother didn't always know what was in my mind. The puzzlement was a pain, like a sliver or thorn lodged invisibly in my skin, that stayed with me for decades. My mother, whom I loved deeply, was treating the rabbit like that. I knew she would not harm an animal on purpose, and yet there was this lack of respect and attention.... It was an anomaly, something I could not resolve or understand. Until now.
Someone wrote in to ask whether our (autistic) experiences of tactile defensiveness, gaze avoidance, auditory, gustatory or olfactory sensitivity changes over time (over a life-time) and/or in response to what else may be going on in our lives. I responded:
I've certainly had changes over the course of my (54 year) life time. When I was a child, I tolerated a very limited range of foods. That range has broadened dramatically over time. When I was 45, I was surprised to find that I could eat even green pepper.
Tactile sensitivity has changed over time, too, possibly due in part to becoming more secure in my control over various aspects of life. I care for my own hair now, for example, except for getting it cut, and being in control may have helped decrease the defensiveness I had for years (because it hurt to have my hair combed). Likewise, I can choose my clothing (although most of it is second-hand and found for me by a friend) and alter it as suits me (e.g., removing labels).
My auditory and olfactory abilities/senses seem especially dependent on my physical (and psychological) state. If I am upset or sick or tired or stressed, I may be "hard of hearing" (actually, "hard of comprehending"), and I may not be able to tolerate some scents/smells (to the extent that I may need to avoid them in order to avoid vomiting). When I'm really tired/stressed, I sometimes can't even comprehend my own speech, much less that of other people.
I'm not sure how those things have changed over time. Not
a lot, I suspect. When I was a child, I was too little
other-oriented to notice much about how interactions were
going when I was upset/stressed (or when I was not upset/
stressed, for that matter The questioner also asked whether we found that our ability to tolerate
distressing situations fluxuated or changed over time. I continued:
Again, I think being more secure in my ability to
exercise (some measure of) control is helpful in
allowing me to tolerate certain situations (noisy,
crowded) better than I used to. That and the adult
perspective that enables me to have a better grasp of
time. When I was young, whatever was going on was likely
to seem all-encompassing, in time as well as in actual
sensory experience. I couldn't (hadn't developed the
capacity to) think past what was "here and now," so if
a situation was painful, it was natural to want to flee.
Being able to budget my own time (e.g., "only 30 more
mintues and then it will be over" or "ten minutes will
fulfill my duty and I can leave") helps me tolerate
situations I'd never seek out on my own account --
as when I am obliged to attend a pot-luck social at
work, for example. I suspect feeling in control --
having it be my own decision to enter into a
situation -- helps also in cases of things like a
bus ride, which has annoying aspects but which I may
choose for reasons that are sufficiently persuasive
for me. Part of what makes sensory sensitivities so
awful in childhood is that we (as children) so often
exprience them as beyond our control. (What we can't
control feels eternal, as well as almost always
seeming arbitrary and capricious and startling.)
With respect to eye-contact, I wrote:
I don't remember anyone nagging me about eye contact when
I was a child. Just lucky, I guess. Or oblivious. :-)
These days, when I have become (belatedly) aware of the
role eye contact plays in NT communication, I sometimes
make an effort to simulate it. But that is for the benefit
of the NT with whom I am conversing. It does nothing for
me except to use up more of my energy and keep part of
my mind (which includes my listening apparatus) distracted
and therefore less efficient.
The questioner also asked whether we found that our ability to tolerate distressing situations fluxuated or changed over time. I continued:
Again, I think being more secure in my ability to exercise (some measure of) control is helpful in allowing me to tolerate certain situations (noisy, crowded) better than I used to. That and the adult perspective that enables me to have a better grasp of time. When I was young, whatever was going on was likely to seem all-encompassing, in time as well as in actual sensory experience. I couldn't (hadn't developed the capacity to) think past what was "here and now," so if a situation was painful, it was natural to want to flee. Being able to budget my own time (e.g., "only 30 more mintues and then it will be over" or "ten minutes will fulfill my duty and I can leave") helps me tolerate situations I'd never seek out on my own account -- as when I am obliged to attend a pot-luck social at work, for example. I suspect feeling in control -- having it be my own decision to enter into a situation -- helps also in cases of things like a bus ride, which has annoying aspects but which I may choose for reasons that are sufficiently persuasive for me. Part of what makes sensory sensitivities so awful in childhood is that we (as children) so often exprience them as beyond our control. (What we can't control feels eternal, as well as almost always seeming arbitrary and capricious and startling.)
With respect to eye-contact, I wrote:
I don't remember anyone nagging me about eye contact when I was a child. Just lucky, I guess. Or oblivious. :-) These days, when I have become (belatedly) aware of the role eye contact plays in NT communication, I sometimes make an effort to simulate it. But that is for the benefit of the NT with whom I am conversing. It does nothing for me except to use up more of my energy and keep part of my mind (which includes my listening apparatus) distracted and therefore less efficient.