Again. And again. And again.

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This is not the post I’m still trying to make for the blog carnival. I can’t seem to write that post. Instead I wrote this one.

I have a relative where a conversation with him can go like this:

Him: Did you know they found that some kinds of cat litter are radioactive?
Me: Actually they didn’t. There was one cat who’d ingested something radioactive, excreted it into the litter box, and the litter was taken to the dump and found radioactive. But it wasn’t the cat litter, it was the cat poop.
Him: Really?
Me: Yeah, check Snopes.
Him: Oh okay. Wow, I never knew that.

Which makes sense as far as it goes. The problem is, a week from then, this conversation can take place:

Him: Did you know they found that some kinds of cat litter are radioactive?
Me: Actually they didn’t. There was one cat who’d ingested something radioactive, excreted it into the litter box, and the litter was taken to the dump and found radioactive. But it wasn’t the cat litter, it was the cat poop.
Him: Really?
Me: Yeah, check Snopes.
Him: Oh okay. Wow, I never knew that.

And a week after that:

Him: Did you know they found that some kinds of cat litter are radioactive?
Me: Actually they didn’t. There was one cat who’d ingested something radioactive, excreted it into the litter box, and the litter was taken to the dump and found radioactive. But it wasn’t the cat litter, it was the cat poop.
Him: Really?
Me: Yeah, check Snopes.
Him: Oh okay. Wow, I never knew that.
Me: Actually this is the third time we’ve had this conversation.
Him: Really?
Me: Yeah.
Him: Are you sure?
Me: Yeah.

etc.

He doesn’t remember the previous conversations, and is likely to keep repeating the mistaken version of the urban legend (not that particular one, it’s just an example) for years. And honestly won’t remember it (or at least doesn’t appear to).

I used to think I didn’t do things like that, and be really puzzled by why he did that. I still don’t know why he in particular does that, but I’ve noticed something odd about myself in this regard.

I’ll discover something that I could swear I’ve never noticed before. Not necessarily something as trivial as an urban legend, either. It’s often something that knowing it makes a big difference in my life overall. It’s often the sort of thing that I can tell is a life-changing discovery, and an important one, and an amazing one. And so I write something about it, still really excited about discovering it for the first time, and/or writing about it for the first time (sometimes it’s something where I have known it for awhile but never been able to write about it).

And then I’ll be looking through the archives of my hard drive, and I’ll find references from two years prior to learning the exact same thing. And then two years prior to that. And then two years prior to that. And so forth.

I want to note something about this: I am not talking about things that are a “hard lesson to learn” in an ethical sense, where despite knowing that something is wrong and a bad idea and so forth, you do it again and again and again and have to keep “re-discovering” that it’s a bad idea. I am talking about the sort of things that most people seem to learn easily, incorporate easily into their background of knowledge that they already have, and then build upon. The sort of knowledge that is along the lines of “letters represent parts of words,” not the sort of knowledge that is along the lines of “I really ought to yell at people less often.” Certainly not the sort of knowledge that most people find easy to forget.

I’ve been talking to someone else who has a weird memory this way, and we’re figuring it’s a retrieval thing, not a storage thing. I am pretty sure that if something triggers the retrieval of certain knowledge, then the knowledge would suddenly appear somewhere. And I know from experience that when you trigger the recall of knowledge, my recall is very good, better than most people’s possibly. But without any trigger, it doesn’t stick in any state where it can be retrieved easily, and deliberate recall is difficult if not impossible and likely to yield fuzzy or distorted results when it yields any at all.

Jim Sinclair wrote in 1989:

I taught myself to read at three, and I had to learn it again at ten, and yet again at seventeen, and at twenty-one, and at twenty-six. The words that it took me twelve years to find have been lost again, and regained, and lost, and still have not come all the way back to where I can be reasonably confident they’ll be there when I need them. It wasn’t enough to figure out just once how to keep track of my eyes and ears and hands and feet all at the same time; I’ve lost track of them and had to find them over and over again.

I don’t know if xe is talking about the same thing or not, but xe might well be. I have learned to be cautious about saying that I have discovered something for the first time. Because at the time when I am discovering that thing, it certainly feels like the first time, and I can’t remember having ever discovered it before. But then I can’t remember very much at any given point in time. Right now I can’t remember much that is outside the room I am in and the subject matter and knowledge that I am immediately dealing with and using, nor can I easily direct my memory outside of those bounds. I could discover something again for the first time right now that I’ve actually discovered twenty times before, and my subjective experience of discovering it would be exactly like those previous twenty times. I’m not blocking out the knowledge of the previous twenty times, I just can’t remember it right then.

I suspect that whatever the mechanism is that is behind this, also explains why I have been unable to retain (in any functional sense) a lot of knowledge and skills that for most people are learned and retained forever, and also why I seem to do some things seemingly out of nowhere that are unprecedented by my usual apparent abilities in any given area. Rather than retaining conscious and deliberate access to certain knowledge, I seem to retain the tools to find that knowledge again.

In that respect I am like a person with no innate sense of direction, who can find something with extensive use of maps, compasses, GPS receivers, etc. (Which would actually be a fairly bizarre experience to me because my sense of direction, while not as infallible as it used to be — and it used to be completely infallible including for places I’d only been to once — is still better than 99% of people I’ve met.) The only difference being that, in that analogy, the person would, if somehow the knowledge of a location was triggered instead of deliberate, be able to walk to that location with no problem at all and no clue how they knew how to do it. But then if they tried to go there on purpose, they would need to use the map and compass, and they might forget that the place existed at all and keep stumbling across it and “discovering it for the first time” even if they’d been there a hundred times before. But then they might keep going back there whenever something triggered their ability to do so, and they might “discover” the location of the place after they’d been going there for a long time without noticing it.

I also have a suspicion (although it’s only that, a suspicion) that an “area of interest,” be that interest simple or complex, sensory or intellectual, represents not necessarily just an area of interest, but a window of easy flow of information and focus of all sorts of abilities that can’t possibly focus on more than that area. For instance, finding words is difficult in any area, but finding words outside of a few specific areas can be impossible. What those areas are depends on the moment. CNN sent me a long list of pre-interview questions. All of the questions are hard. But some of them I answered like the following:

–What do you think about the war in Iraq?

I don’t like it. I have never written about it before, so I don’t have language built up to describe all the particular reasons I don’t like it, but they do exist. (This is one thing that isn’t always obvious if you get me talking about something I’ve already talked about before, is that there are entire areas that I have plenty of knowledge around and never figured out words for.)

But I think it’s not just about not having talked about it much before. It is also that it does not coincide closely enough with my areas of interest to be able to come up with words for it. I am interested in the war in Iraq, and I hear a lot about it, have opinions about it, and can see patterns and stuff that relate to it. But neither that nor the vast majority of my knowledge or interest is within one of those windows. People who know me well know me as having a lot more breadth of knowledge and interest than people who know me only by my writing. At the same time, people who know me only by my writing in areas that I am good at, would probably be shocked at the things I know and care about that I am totally incapable of communicating most of the time. (How many people know that I cried yesterday when I found out someone shot one of the seven remaining female Amur leopards?)

This is why, while there is a difference between someone who can write at length but only about their area of interest and someone who cannot write at all, the difference is not necessarily anywhere near as vast as some people believe it to be, and it is a mistake to assume that a person’s communication skills about one topic reflect an ability to communicate about anything else (or even a consistent ability to communicate about that topic).

I think the fact that I’m more about the tools to figure things out than the things that are already figured out (at least when it comes to what my strengths are), also means I see things that other people, having already “figured things out,” don’t notice. Sure, I might have to figure something out a hundred times over that most people figure out once and are done with for life. But that means I’m unlikely to figure something out, decide I have it all figured out, and never again see it from a new angle or as if for the first time. If I have to do it over and over again from scratch, I’m more likely to notice the flaws in what people think they know but never have to figure out, or in what they figured out so long ago that they’ve forgotten there’s anything to figure out about it, or anything more basic than what they already “know”.

It also means that by most people’s standards I must look (over time) some combination of haphazard, confusing, paradoxical, contradictory, regressive, backwards, unreliable, and totally outside their definitions of how people are supposed to operate (and therefore not really operating in exactly the way I do operate, but doing something else that is easier for them to wrap their heads around even if they’re completely wrong). But I don’t think I am by nature any of those things, I think I just look that way because of a configuration that’s as normal for me as other people’s configuration is to them. I think I’ve also been confused by myself, because the world tends to explain humanity in terms that don’t include people who operate this way, and it does so even to people who do operate this way, who are as likely to absorb the at-best-incomplete definitions of “how people work” as anyone else.

About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Physically and cognitively disabled. Anything you hear in the media or gossip is likely to be oversimplified at best and wildly inaccurate at worst, the only way to get to know me is to actually know me. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died a couple years ago and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

14 responses »

  1. There’s a song by Jeffrey Lewis that goes something like
    “No song is too repetitive if every time you play a note you think of it as the first time”
    I’m misquoting because I can’t find the title but that’s the idea.
    You probably know what I’m getting at with it.
    Also my memory is like that. Specifically with LJ entries. I’ve heard that the state-specificity of memory is extreme with autistics. I have noticed this while writing down all of my memories ever. They don’t show up chronologically, they show up randomly.

  2. I have had that experience and been called on it. Obviously, I can’t catch myself doing it unless I’ve written down the discovery before. Calendars have proven I do it. My husband has caught me and it led to some fights. I was convinced that he was gaslighting me (trying to convince me I’m crazy). I don’t have that, “oh yeah, I remember” experience but total “Aha! This is new, I’m proud of myself for finding this out!”

    It’s scary in a way. It’s especially unnerving when you’ve had an extraordinary memory all your life.

  3. Everybody’s mind works diiferently, sometimes there;ll be things that people will recognise in each other and say “oh right, I do that”, but no -one is exactly the same as somebosy else. So your memory retrieval and your communication issues will be unique, i na lot of ways, to you. I think I understand a little about part of them, I was taught to tie my shoelaces, have been shown numerous times and still can’t get the properly. Ditto changing a lightbulb, or making a bed properly, or (on the lighter side of things) how to make a paper aeroplane. With all these things I just can’t seem to retain the information and then later on I’ll be shown again and think “of course, that’s how you do it” and then I’ll forget again.

    Communicating differences and difficulties makes perfect sense as well and they do depend on circumstances. I’ve stood waiting ages whilst a shop assistant was busy doing some work behind the till (she’d not noticed me) because I couldn’t let her know I was there. But then I’ve managed to ask a man to move a bit back because he was standing to close to the card machine where I had to key in my debit card number (Chip and Pin machine) and the checkout worker would probably have done that for me, so there was no need. I’ve chatted for ages about autism and aspergers to someone and then spent ages sitting quietly, unable to join in a talk about a mutual friend. I’ve stood up and read poems in front of a class when I was at school but not told my parents during the five years at secondary school that I needed a new PE kit and I also let a lad walk off with my calculator at the age of 16/17 as I couldn’t tell him it was mine (I’d dropped it on the floor).

  4. I didn’t know one of the Amur leopards had been shot.

    When I read that I got tears in my eyes.

    Which just goes to show, you’re not the only one.

    I didn’t even cry at 9/11, or the VA Tech shooting, or any other human disaster.

  5. KimJ: It’s like that for me, too. I get that “Oh wow I’m so excited I finally figured this out for the first time ever!” thing and then I later find out that I wrote about discovering it years ago, and then I get really confused.

    You wrote: It’s scary in a way. It’s especially unnerving when you’ve had an extraordinary memory all your life.

    Yeah, exactly. I do have a really good memory, when it works. And then I’ll be absolutely dead-accurate. But then if I’m not getting a memory triggered in some way, it’s just not there, and I “forget” it.

  6. yeah thats a very autistic thing

    only one thing can be done at a time

    so whats gone before is packed down to its essential elements and put away

    and if you want to look at it again you have to unpack and rebuild it and specific memories can be lost

  7. I don’t think that autistic people can only do one thing at a time.

    I think that we are doing things with so few things filtered out (and so few of the shortcuts that other people tend to take) that we have to do several things at a time in order to be doing what other people consider (falsely) to be “one thing”.

  8. Oh the hilarity… I just had someone post a link to this entry in the very thread I copied to you which got us talking on this in the first place. I think if we all pointed each other the right way we would not have thos retrieval issues :)

  9. “This is one thing that isn’t always obvious if you get me talking about something I’ve already talked about before, is that there are entire areas that I have plenty of knowledge around and never figured out words for”

    Something I have started doing since I started writing online was to start “composing” threads and emails “in my head”. Since I have so few conversations in real life, I never really got the exercise of “practising conversations” until I started typing online so regularly.

    A lot of the time it takes a long while between these fragments of threads and ideas and my actually sitting down and typing them out.

    A lot of the time I never send them off or post them.

    Sometimes I do, and the person then wonders why I am sending them the same conclusion I had come to two years ago, all over again.

    The irony is that I think I sent a copy of the Email that got our discussion started to a person to whom I had posted almost exactly the same thing not once but at least twice before, once a bit over a month ago and the other time maybe two years ago…. I do hope she sees the irony in it at least ;)

    Anyway what I wanted to say was that while interests do direct WHAT I “practise” about, it is still a handy practice to get used to verbal expression (similar to what I mentioned in the original post that started this musing, the exercise of verbally going through your day’s events, which helped me develop an inner verbal stream).

  10. This sounds frustrating and disorienting. I’m more like your relative, in that I’ll have a conversation fifteen times where I ask my boyfriend where we are eating dinner, then he tells me, and I forget the conversation ever happened. I also lose my keys, wallet, and important papers constantly and often when I decide to go somewhere, I get distracted on the way and end up somewhere else.

    But when it comes to abstract, a-hah type realizations (of which I have had many while reading your blog!) they tend to stick with me forever. I think my problem is encoding. I’m so lost in my own inner abstract musings that I fail to encode the situation around me. My dad calls this “having very loud thoughts.”

  11. I find I have a good memory of a poor memory depending on whether what I’m supposed to remember is on the currently available section of my vast web of knowledge. Some things will call up certain parts of that web of knowledge but it’s hard to really ‘think of something else’ because that kind of attempt doesn’t call anything in particular up.

    In writing stuff, I try to read something related before trying to write about something, to get that part of my knowledge running. For example before adding to a story I’m working on I read some of what I’ve already written in order to slip back into the stream of the story.

  12. This a an e-mail I wrote to Donna Williams. I am very interested to know what you think:

    Hi Donna,
    I am a writer in psychology and philosophy in Chicago. I suffered a tbi (traumatic brain injury) at the age of 16 which produced permanent symptoms which include sleep disorders, hypersensitivity to light, sound and touch, ocd, apathy, a slowness in processing affectively intense stimuli, easy distraciblility and need to avoid direct eye contact, and difficulty in processing rapidly transpiring social situations. These symptoms are common to many with acquired brain injuries.

    I have studied theories of information processing and affectivity as well as researching the areas of the brain which may be functionally involved in tbi and autism, and I developed the hypothesis that autism and tbi may in many cases share common features. It may turn out to be the case that the difference between autistic experience and the symptoms of tbi is mainly the age of onset . An acquired brain injury (unless it is acquired in infancy) occurs after the point when an individual’s brain has been able to effectively experience social affectivity, perceptual integration and an interpersonal concept of “self”.

    Thus, the memory of these concepts remain intact post-injury and can be accessed to aid in reconstructing or filling-in-for the fragmentary perceptual-cognitive processing following a tbi. TBI’ers typically say their old self “died” as a result of their injury and a new one replaced it, but I would argue that what is crucial is that they still remember this old self. Autistics, on the other hand, have no recollections to fall back on of the experience of “normal” perceptual and social-emotional integration and so must undertake the herculean task of constructing these concepts indirectly and piecemeal.

    What I’m suggesting is that the difference between the autistic and the tbi’er is like the difference between someone born deaf and someone who became deaf later in life. There is an entire process of perceptual integration between the auditory , visual and movement cortices which has already occurred within the brain of the person who was born with hearing which was unavailable to the person born deaf. One the person born hearing acquires this information, these concepts, they never forget them , and even after they become deaf, they are able to draw on this information to sound out words on a page, etc. In the same way, the person with acquired brain injury is able, in social situations, to draw upon well-learned concepts concerning social-affective cues to use as a crutch when ongoing situations move to rapidly and intensely for them to keep up “on the fly”.

    Has there ever been a documented case of autism in someone older than 8 or 9, who had, according to DETAILED and ACCURATE observations of family and friends, been without a trace of autistic behaviors prior to that age? I would suggest that autism is something that is not and cannot be “acquired” later in life precisely because it is a brain injury that is fundamentally defined by a tbi-syndrome that occurs before the individual has the chance to effectively process rapid, sequentially dense, multiple perceptual and social-affective input, and therefore has no store of such information to draw.

    If this hypothesis is found to have merit, it will allow us to widen the autism spectrum to include not just ADD, ADHD, Asperger’s and such, but also a whole range of acquired brain syndromes which affect perhaps 100’s of millions of people around the world. Donna, when I read your description of how the world appears to you, there are significant aspects of it which I can directly relate to. If, immediately after my injury, if I hadn’t had the memory of the meaning, importance and rewards associated with social-affective thinking, I would have had little reason to reason to pull away from apathetic immersion in low-level perceptual stimulation

    (I also think its important to separate ADD and ADHD from TBI. In many cases, including mine, the core symptoms of TBI are almost opposite of ADD. ADD’ers thrive on multitasking whereas the slowness of processing and deficits in concentration typically of tbi’s require as few distractions as possible in order to function.)

    Are you aware of any research that deals with this topic ?

    Joshua Soffer

  13. In some cases TBI and congenital neurological differences differ only in age of onset (especially when they had a neonatal brain injury) but in others I think it’s quite different.

  14. My own suspicion is that autism and TBI look similar because autistic people’s brains (even when not injured at any point in life) function differently in areas where people with TBI’s brains functioned in a more standard way at one point and then acquired structural differences in those areas.

    There are a lot of parallels that can be drawn, but I think there are still differences between a functional difference that occurs because of overall brain organization (as probably happens in autism), and a structural difference that resulted form an injury. They can resemble each other more when an injury happens so early in life that the entire brain adapts to it, but I suspect that’s not what’s going on with most autistic people. (Although some, quite possibly, it is.)

    I still find that I have a lot in common with many people with TBI or strokes though. And I don’t doubt that I probably, in addition to being autistic, have some degree of brain damage from 20 years of head banging (more frequently at some points than others) and 4 or 5 years of neuroleptics.

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