posted
My "bio" tends to be rather vague on the nature of my disabilities. I've referred to them as "neurological," "invisible" (I use the quote marks when I use that word), or maybe neuromotor.
In fact, I've known since the early 1990s what kind of label I'd have if I was going through school now and made a conscious decision not to self-identify. Main reason is that the label - nonverbal learning disabilities - is what one professional friend of mine pegged pretty well when he termed the literature "assaultive."
In fact, much of what I do - policy analysis, organizing, general research on culture - aren't thought to be likely professional goals for someone like me.
I decided it was time to "come out of the closet" when an acquaintance emailed me and urged me to submit a proposal to the Nonverbal Learning Disabilities Association Conference. I did, they enthusiastically accepted and I'm doing it.
quote:STEPHEN DRAKE, Research Analyst, Policy Analyst and Organizer
Presentation: "No one told me I shouldn't be able to do this."
Stephen Drake is a researcher, policy analyst and organizer. He'll share his journey of awareness and development of successful strategies -- a journey in which his struggles with "deficits" have turned out to be as important in helping him in his work as his strengths.
Stephen made his own self-diagnosis as a grad student in Special Education. Since 1998, he's worked as a disability activist, engaged in public debate, organizing protests, analyzing public policy and other duties related to his position as a research analyst for a national disability rights group. He's found that his obvious strengths help him immensely on the job, but so do some areas that started out "deficits" common in folks with NLD. Stephen will share some of his journey, his own self-evolved coping strategies, and some of his own interpretation of what some of the "core" issues are in terms of NLD in his own life, which are a little different than what is reflected in NLD literature.
Frankly, I have one big concern (and a lot of littler ones) about this session. Generally, when I give a talk, my goal is to have the audience leave feeling worried and uncertain about things they were pretty sure about when they walked in.
I don't think that's the appropriate note for this gig. I've never tried being "inspirational" before - there are bets being made in the office here as to whether or not I can pull that off.
Great vocabulary and verbal expression Excellent memory skills Attention to detail, but misses the big picture Trouble understanding reading Difficulty with math, especially word problems Poor abstract reasoning Physically awkward; poor coordination Messy and laborious handwriting Concrete thinking; taking things very literally Trouble with nonverbal communication, like body language, facial expression and tone of voice Poor social skills; difficulty making and keeping friends Fear of new situations Trouble adjusting to changes May be very naïve and lack common sense Anxiety, depression, low self-esteem May withdraw, becoming agoraphobic (abnormal fear of open spaces)
Part of what I'll talk about is that this is an extension of earlier writing on kids with hydrocephalus (fortunately, I was born too early to be assaulted with either the hydrocephalus stuff or the NLD stuff, which is really negative).
Short and simplified, our neuropsych evals are kind of the flip side of the more "traditional" learning disabilities. Our high scores are in the areas having to do with verbal information. Any subtest having spatial components or requiring multimodal processing is where we fall down. (relatively high verbal IQ, relatively low performance IQ)
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posted
I have a question. Have you heard of a disability where someone doesn't have the ability to form mental images?
I have always been that way, when I was younger they said I had some sort of spatial disorder, but since I was also "gifted" that I would learn to compensate for it...which I mostly have.
I can't draw worth anything, and my handwriting is strange. I have learned to do most spatial tasks verbally. For example if I am told to "rotate" a shape, I would verbally describe it in my head, and then verbally describe what it would look like if the lines were moved.
I even daydream verbally, I don't "see" things happening in daydreams, I describe them...much like you would if writing a story.
It doesn't really bother me, like I said I have compensated...and can actually perform many spatial tasks, I just do them verbally. Really, the only thing I haven't figured out how to do is describe someone unless I plan to ahead of time. For example, if I know that I am going to have to describe someone, I will verbally think about certain characteristics that I can then describe later. However, if I didn't do that at the time that I saw them, I can't think back to remember what they looked like later and describe them.
anyway...I guess that is a bit off track...but the topic made me thing of it, so I figured I would see if anyone else had heard of such a thing.
Posts: 1901 | Registered: May 2004
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I have these problems, too, at least to some degree. I'm usually okay picturing shapes or visualizing simple concepts like rotation, but when it starts getting complicated, I'm out. I'll understand it fine, but I'll have a hard time picturing it in my head.
I also can't visualize faces to save my life, and that combined with a horrible short-term memory can lead to some embarrassing situations when you work in customer service. I can't describe people, either. I can't draw worth a flip, and my handwriting is pretty bad - some have said it looks weird.
So yeah...I'm pretty messed up. But you're not alone, and that's what counts. Posts: 1945 | Registered: Jul 2005
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I have trouble with non-verbal communication, but I am good at math, reading, and abstract thinking. I match about 1/3 of the things on that list, though. I wish someone would write a book about non-verbal communication, so I can learn it by rote.
Posts: 6246 | Registered: Aug 2004
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quote:Wow, that's really cool *wants to be a disability advocate too*
Syn,
I forget where you're located, but it's definitely something you could investigate. If you're in a big city, the local Independent Living Center is usually looking for volunteers. It's one way to learn advocacy issues and the people involved in them. Find out if it's right and get yourself known if there's an opening that actually *pays*.
Not talking a big time investment - just a reliable one.
More later to Lupus, rollainm, and Tatiana, who all seem to be very *on* topic to me, contrary to Lupus's concerns in that regard. Posts: 4344 | Registered: Mar 2003
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quote:I can't draw worth anything, and my handwriting is strange. I have learned to do most spatial tasks verbally. For example if I am told to "rotate" a shape, I would verbally describe it in my head, and then verbally describe what it would look like if the lines were moved.
Wow, that's amazing.
There were a couple of things that made me think of one of my kids, but he's pretty coordinated.
This is the boy who would ask if his food was "too hot" or "three hot". I think he was the one who spent a year, when we'd prompt him for "the magic word", he'd say "The magic word." And then we'd all die laughing. But I could be remembering the wrong child. He might have an inflated sense of how funny he is, which gets him into trouble with educators.
Posts: 11017 | Registered: Apr 2003
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quote:I have a question. Have you heard of a disability where someone doesn't have the ability to form mental images?
I have always been that way, when I was younger they said I had some sort of spatial disorder, but since I was also "gifted" that I would learn to compensate for it...which I mostly have.
I can't draw worth anything, and my handwriting is strange. I have learned to do most spatial tasks verbally. For example if I am told to "rotate" a shape, I would verbally describe it in my head, and then verbally describe what it would look like if the lines were moved.
I even daydream verbally, I don't "see" things happening in daydreams, I describe them...much like you would if writing a story.
Lupus, this certainly overlaps with the nonverbal learning disabilities (which will now be referred to as "NLD" to save my poor fingers). And like any other neurological label, it suggests a lot more homogeneity or sameness than there really is. People can have some of the diagnostic features - it's very similar to the spectrum in regard to Autism and Aspergers in that regard. And there is overlap between NLD and Aspergers.
I look at the issues in my own case as having components of both "difference" and "deficit" - certain aspects of my weird wiring that is just "different" - odd, atypical. Other aspects just plain don't work as well as the wiring in most people's heads - as in neuromotor and attention-shifting issues.
It's also fully possible clearly be someone who fits within this label and be doing well without some type of "intervention." It depends on a large variety of factors - individual strengths vs. problem areas, educational setting, occupational interests, personality factors and a bunch of things I probably can't even begin to guess at.
That shouldn't be surprising - there certainly are a fair number of well-known people with the more "traditional" labels who have found their way to happy lives without the label. Doesn't mean that anyone with the same learning disability can do the same thing without help, but it tells us a lot about individual variation.
I'm trying to figure out if this makes any sense. I'm not used to talking or typing about this and I have a little over a month to *get* used to it. Posts: 4344 | Registered: Mar 2003
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quote: I have these problems, too, at least to some degree. I'm usually okay picturing shapes or visualizing simple concepts like rotation, but when it starts getting complicated, I'm out. I'll understand it fine, but I'll have a hard time picturing it in my head.
I also can't visualize faces to save my life, and that combined with a horrible short-term memory can lead to some embarrassing situations when you work in customer service. I can't describe people, either. I can't draw worth a flip, and my handwriting is pretty bad - some have said it looks weird
rollainm,
I don't know how old you are, but an interesting thing that happened with me is that I very unexpectedly developed some rudimentary spatial and visualization abilities in my thirties. It was well past the period when one would expect something like that, even if I was working on it, which I wasn't. The nearest thing I can figure to explain it is maybe Howard Gardner was onto something. Gardner is the proponent of the "multiple intelligences" model and says - if I recall correctly - that the best way to bring *everything* up is to exercise a person's cognitive strengths.
In my case, that would make sense. I was buried in graduate studies concentrating heavily and using my verbal/language abilities to the max. Could be that is why other stuff started to kick in then.
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I have a very hard time recognizing faces at first. I certainly recognize all of the people familiar to me, but say I'm watching a movie and two of the actors are new to me and both have short brown hair. It will take me a while to tell them apart, and until then, I'll latch onto some difference, like one of them has a funny curl of hair over his forehead.
I would have trouble describing anyone, even my own husband, to a sketch artist, as I wouldn't be able to pick out individual characteristics from the whole picture in my head. I doubt I'd EVER be able to describe someone I've only seen once or twice to a sketch artist. I'm always amazed at the people who can do it in movies and television. I think the sketch artists would be entirely frustrated with me.
I have no idea if that would be a symptom of a disability. I also have a very hard time with spoken letters and numbers in a sequence. I am a fairly good speller, but if you spell something out verbally to me, I probably will have very little idea of what word you're spelling, unless I concentrate very hard.
My boss spelled out P-S-Y-C-H-A-R-T-I-C-L-E-S to me the other day when telling me about a particular database. I got the Psych part, but the rest just sounded like a jumble in my mind, it's almost like I heard a formless blob of sound. (She did spell it fairly fast, I think.) I had to tell her I couldn't hear letters when they were spoken, and I said is it just spelled like "Psych" and "Articles"? She nodded, and all was well.
When I copy down telephone numbers, I have to be ready and write down every number once it is said. If I have no pen, sometimes I can repeat it over and over in my head with varying degrees of success.
I think that's called aural dyslexia, but I only figured it out about myself in adulthood and it never really seemed to negatively impact my life. So I don't actually know.
I guess both the face and spelling thing are similar, if you think about it in that I have difficulty recalling small parts of a whole, but once learned, I'm very good at remembering the whole forever. So individual letters? No. Whole words? Easy. Individual characteristics? No. Whole faces? Easy--once familiar.
I find it very interesting to think about.
Posts: 2880 | Registered: Jun 2004
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I could have written nearly all of Katarain's post. But not only do I not remember faces easily, I also tend to forget new names moments after they've been said, even if I try to concentrate on them. If I'm only meeting one new person at a time, it's not so bad. More than that and I'm lost. I remember personalities, physical quirks, things like that, and it's often a long time before I'm able to piece together name, appearance and personality to make a complete person. Once I do that, though, I have no problems remembering any of the parts, unless there has been a long time with no contact, in which case I'll likely re-forget the name.
I tend to test well on spatial manipulation, though. Maybe it's because the tests ask me to manipulate shapes that I already know, rather than having to learn new ones right then.
I'm very good at spelling, but if someone says a sequence of letters at me, I have to slowly and laboriously imagine them sliding into place in my mind, so that I can "see" what the word is. Otherwise, they're completely meaningless to me.
I can draw a reasonable representation of pretty much anything I can see (or that I've already learned how to draw), but drawing anything realistic without a model is pretty much impossible.
It's interesting, I've never made the connection that all of these quirks were similar before. Regarding the list, I'll bold the ones that I think apply.
quote:Great vocabulary and verbal expression Excellent memory skills Attention to detail, but misses the big picture Trouble understanding reading Difficulty with math, especially word problems (I've never had trouble with math, although I did have difficulties with word problems for a long time. At some point in college, I suddenly realized that most of the math I had been doing for the last couple of years had been word problems, and that they weren't any harder than any other kind of math.)
Poor abstract reasoning Physically awkward; poor coordination Messy and laborious handwriting Concrete thinking; taking things very literally Trouble with nonverbal communication, like body language, facial expression and tone of voice Poor social skills; difficulty making and keeping friends Fear of new situations Trouble adjusting to changes May be very naïve and lack common sense Anxiety, depression, low self-esteem May withdraw, becoming agoraphobic (abnormal fear of open spaces)
I've made it through life just fine so far, so clearly my strengths are picking up the slack. I don't feel disadvantaged in any way. It is interesting to see the trends, though.
quote:I have trouble with non-verbal communication, but I am good at math, reading, and abstract thinking. I match about 1/3 of the things on that list, though. I wish someone would write a book about non-verbal communication, so I can learn it by rote.
I think there probably *are* books on that. They'll probably only bring you just so far. I've gotten much better at that, although it wasn't as big a problem as dealing with group interactions.
In my case, there's a pretty clear trail in regard to the impact this particular grab-bag of neurological stuff had on me. By the time I graduated high school I was in the bottom third of my class, in spite of the fact that I loved to learn. On the basis of some really great SAT scores (verbal, natch) I was admitted to Syracuse University where I proved it *was* possible for a male to flunk courses during Viet Nam grade inflation (although it had ended by then, there was a *draft*, folks. And profs were reluctant to flunk males who might lose deferments and end up in Viet Nam. That means everyone's grades went up and it took years for the profs to get back to their pre Viet Nam grading practices in some places).
Lots of social rules were a mystery to me. There's still lots I don't get about prevalent values, beliefs and attitudes, although I recognize their reality.
I described myself to the pres of the NLDA as kind of an "anthropologist who's gone native." Feels comfortable and homelike most of the time but once in awhile I get reminded this really isn't my country (I mean that in a metaphorical sense of course).
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theCrowsWife, I like how you described all of that. I can relate to pretty much all of it.
I didn't really think that I fit that list, but maybe I do.
quote:Great vocabulary and verbal expression
Excellent memory skills
Attention to detail, but misses the big picture--I think I have the opposite of this.
Trouble understanding reading--this one is difficult. At first, I thought no way, I love reading. But there are certain types of passages that I have a very hard time concentrating on. I always blamed it on the author, not me, though.
Difficulty with math, especially word problems--I think this one applies. I would say that I'm good at math like basic math, algebra, and geometry, but I had to work at it--it certainly was difficult, and one problem could take me several pages of scratch work.
Poor abstract reasoning--does the fact that I don't really understand the question (can't think of practical/concrete examples) mean that I have poor abstract reasoning??
Physically awkward; poor coordination--I wouldn't really describe myself like this, because I tend to ignore when I knock into things--it's just normal to me. My husband, however, would certainly say this describes me.
Messy and laborious handwriting--Oh YES this is me--but I always blamed typing, even though my handwriting was bad way before I learned to type.
Concrete thinking; taking things very literally--I definitely do this. I like doing this. Shouldn't everyone strive to be specific and accurate in their speech to avoid misunderstanding? It bothers me when people AREN'T like this!
Trouble with nonverbal communication, like body language, facial expression and tone of voice--I don't know... Probably.
Poor social skills; difficulty making and keeping friends--Well, maybe? I have very few friends, but I thought I had okay social skills--I mean, I'm polite and nice to everyone. But I'm not very outgoing at all, which I blame for the lack of friends. The friends I do have are very close.
Fear of new situations--Wow, I do have this, but I never identified it. I can get very anxious about new situations. I find this somewhat controllable, though.
Trouble adjusting to changes--I don't think this applies to me. Sometimes, I guess.
May be very naïve and lack common sense--I'm afraid so. I work on it.
Anxiety, depression, low self-esteem--I have had 3 panic attacks in my life, all brought on by extreme stress. They also run in my family, but I have it pretty mildly, I think. I do have problems with depression, but I go through phases. Generally, I am extremely optimistic--perhaps that goes along with my naïvity. I've dealt with low self-esteem physically, but my husband helps to counter that. I happen to have very high self-esteem regarding my non-physical attributes.
May withdraw, becoming agoraphobic (abnormal fear of open spaces)--This is definitely not me. I love open country and space. Closed spaces make me nervous, but I can handle it--sometimes.
What does it mean that a lot of those are bolded? Some of them just seem normal to me--aren't a lot of people like that?
I also have difficulty listening to people talking to me sometimes. My mind tends to go off on its own tangents.
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posted
Wouldn't it be fairer to say that you're a native who's gone on to become an anthropologist? I think the analogy's closer from that angle.
Posts: 37449 | Registered: May 1999
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quote:I also have difficulty listening to people talking to me sometimes. My mind tends to go off on its own tangents.
I'm thinking this isn't so much of a disability as simply human nature.
I don't know that I'd use the word disability, exactly, but the level to which I do this seems to be above and beyond normal human nature. Perhaps it's not and others are very good at covering.
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quote:Wouldn't it be fairer to say that you're a native who's gone on to become an anthropologist? I think the analogy's closer from that angle.
Not really. There are a lot of social rules that most people seem to pick up by osmosis that I had to master through observation and analysis.
So a lot of situations that used to be hard aren't any more. Others I can fake my way through - extremely well. Others I just avoid.
There's very little that is "spontaneous" in my behavior in social situations, although in the well-practiced ones it can look that way. Sometimes it feels that way for a brief span.
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quote:There are a lot of social rules that most people seem to pick up by osmosis that I had to master through observation and analysis.
Well, that's my point. You're a "native" of your condition, studying and advocating for your condition (and others). Rather than someone who lacks any disabilities who, upon studying the "disabled," chooses to display a disability (which is, after all, what "going native" usually means in that context), you're someone who has a disability who has chosen to study and advocate for people with disabilities from the viewpoint of (and among) those who do not.
Posts: 37449 | Registered: May 1999
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quote: Well, that's my point. You're a "native" of your condition, studying and advocating for your condition (and others). Rather than someone who lacks any disabilities who, upon studying the "disabled," chooses to display a disability (which is, after all, what "going native" usually means in that context), you're someone who has a disability who has chosen to study and advocate for people with disabilities from the viewpoint of (and among) those who do not.
OK, we're talking two different contexts here. The presentation I'm doing at NLDA is a sideline. I'm doing it for a number of reasons - needing to stretch myself, providing a "success" story to a group of people that have been told there won't be many, and some other stuff I haven't fully sorted out yet.
My "anthropologist gone native" refers to my everyday life, especially as it pertains to my activities in my work. Much of it entails analysis of discourse, attitudes and trends in the culture - how to make sense of them and how to have some kind of impact on them.
A lot of whatever success I have in that endeavor depends as much on my starting as an "outsider" as it does on my more obvious strengths.
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quote:I also have difficulty listening to people talking to me sometimes. My mind tends to go off on its own tangents.
I'm thinking this isn't so much of a disability as simply human nature.
I don't know that I'd use the word disability, exactly, but the level to which I do this seems to be above and beyond normal human nature. Perhaps it's not and others are very good at covering.
Honestly, that would be my guess. I suspect that a short attention span is endemic. That's precisely why charming people are signifigant - the ability to hold others' attention is rare.
Posts: 1753 | Registered: Aug 2002
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Great vocabulary and verbal expression - People tell me so. Excellent memory skills - so long as it makes sense in the bigger picture, I astonish people with my memory, but isolated things like people's names or whatever, not at all. Attention to detail, but misses the big picture - I definitely pay attention to detail, but I call myself seeing the big picture too, at least as regards systems and physics and machines and stuff. Stuff about why people act the way they do, not at all. Adults scare me. Animals and children I feel comfortable around and can read their signals just fine. Trouble understanding reading - No, I am a readaholic and have good comprehension. Difficulty with math, especially word problems - No, I love math and especially word problems. Poor abstract reasoning - No, I have good abstract reasoning and love logic puzzles and games, etc. Physically awkward; poor coordination - I'm not one who can pick up physical things on the first few tries. I have to practice a lot but then I do get graceful eventually. For instance, it took me 2 months to learn to juggle, when the kid next door who is a natural athlete was doing it 15 minutes after I showed him how. Messy and laborious handwriting - My handwriting is neat when I want it to be, and take the time. Otherwise it's sloppy. Concrete thinking; taking things very literally - I do this. Even when I know it's a joke, I analyze it literally and respond jokingly as though it's meant literally. Trouble with nonverbal communication, like body language, facial expression and tone of voice - Absolutely! I think it might be because adults scare me. (I was abused as a child and I think I'm still scared of big people because of that.) So I don't look at them or make eye contact. You can't read someone's body language if your eyes are turned away. Poor social skills; difficulty making and keeping friends - I have to learn things by rote that other people seem to know by instinct. I make friends easily, though, and I tend to keep my friends forever if there is any possible way. I really don't like losing friends. Fear of new situations -- not me. I enjoy new situations, traveling to new places, trying things I've never done before. I'm a xenophile. Trouble adjusting to changes -- not really, but I do get things that I do frequently down to an exact routine (so that they don't take any thought) and if this routine is interrupted or changed it can throw me for a loop. I think I deal pretty well, though. But stuff like changing where the Ctrl key is on the keyboard drives me nuts. I want to murder whoever had that idea or whatever, because it messes with my low level sub-routines for a long time. May be very naïve and lack common sense - I think I do come across as naive or childlike. I'm actually not, though, but I've made a conscious choice to trust people, to not be cynical, and to believe the best of people and situations. Anxiety, depression, low self-esteem. Absolutely! Cured of depression finally in the last 10 years by my religion. May withdraw, becoming agoraphobic (abnormal fear of open spaces) --- not really although I tend to enjoy my home a whole lot. Because I love it here so much, I don't go out as often as I have in the past.
One of the rules I learned by rote is to wait until someone contacts me first between times contacting them first. I think other people have instincts about when they're becoming pests that I don't have, so I practically make all my friends message me first, call me first, invite me first, etc. I realize if both people do this then nobody will be friends, but it's how it has to work with me.
Other rules I learned by rote are found in Tatiana's Twelve Tips for making friends. I would love to read other rules of social interaction that I could learn by rote.
Oh here's something that happens a lot. I never have any clue whether I'm talking over someone's head or under, and I find it hard to make myself understood in general, since my thought processes seem to be different than most everyone else's. So I tend to overexplain whatever I'm talking about and then I think I leave people feeling that I'm talking down to them or patronizing them, or that I think they're idiots. None of that is true, I just have no mental map in my mind of what other people are thinking. I have tried so so hard to develop such maps, but the only times I've been able to directly compare, when close friends will talk very frankly with me about stuff, my mental map was wildly, ludicrously in error. <laughs> So I sort of approach everyone as though they are a tabula rasa. I have no way to map people into my mind. I think this annoys people and puts many people off.
If you're blind people can understand that and compensate for it, but it's hard to tell people you lack a sense that there is no name for and they don't even realize they have. I wouldn't know that sense existed either except for the fact that I lack it.
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I don't do well with questions with no context. If you just walk up to me and ask me what I think about X, I have no way to answer you. What about X?
I also never know how much truth folks want to hear. Everyone has their own little invisible box where their view of the world lives, and they want your thoughts to fit inside their box. I have no sense of what this is and have learned to warn people not to ask me a direct question unless they want my honest opinion. I don't know how to make my opinion fit your reality.
It leaves me somewhat humbled that people I consider completely useless morons can still be so good at an interaction I can't even find while looking for it. I suppose it proves the adage that everyone is good at something. Posts: 2283 | Registered: Dec 2003
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I also can't visualize faces to save my life, and that combined with a horrible short-term memory can lead to some embarrassing situations when you work in customer service. I can't describe people, either. I can't draw worth a flip, and my handwriting is pretty bad - some have said it looks weird.
I can meet someone and talk to them for two hours, walk down the street and forget what their face looks like. If I see it again I will recognize it, and over a long period it will be easy to recall, but within a few hours of meeting them, their face doesn't imprint on my memory. Weird?
Posts: 9912 | Registered: Nov 2005
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The part of that that is weird to me is that eventually the face will imprint. I could have written that post, except that if I saw the person again the next day I would NOT recognize them.
And if you asked me right now what my husband's face looks like I could tell you that he has a beard. But that's about it.
Posts: 9866 | Registered: Apr 2002
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Well, the time ran away from me. I'm down to the last two days before I leave for the conference and I am rushing to put together overheads. Many interruptions over the last couple weeks - meeting at Rand was expected, but the quadruple bypass for Diane's mom wasn't. Much worry and traveling for a number of days - but things look really good right now - she got out of ICU within 48 hours and is doing even better than the medical team expected in terms of recovery.
So now I have this thing I'm working on...
Right now, I am doing a kind of overview of general principles - about the presentation, me and how it might relate to the audience.
For anyone who checks this thread, does this sound interesting or coherent at all?
AN OVERVIEW:
1.NLD literature is an extension of earlier – and assaultive – literature on kids with hydrocephalus (e.g. “cocktail party speech,” “hyperlexia”)
2.Labelling is a double-edged sword – it provides explanations for differences and difficulties, but shapes the perceptions of those dealing with us and the expectations people have for us.
3.Small issues can become bigger ones over time, and can provide simpler explanations for problem areas than are currently favored.
4.Over time, what was once a weakness can become a strength. (No, it's really not Zen)
5.No one's experience can represent everyone else's, but since none of us is totally unique, we all have insights and experiences that can inform and instruct others.
6.NLD and other “neuro” labels are (hopefully) not just a matter of disability, but of difference as well. Some of our “disability” is a matter of difference and some really is a matter of disability.
7.People grow and evolve across the lifespan. No one is a passive witness to their life – we all try to adapt and develop strategies to succeed – or at least avoid disaster.
On the negativity of NLD literature - I'm not alone in looking at it that way.
By way of example, the leading expert (he defined and identified NLD) Byron Rourke has a chart on his website of primary assets and deficits.
At the end of the chart, there's this:
Psychosocial Deficits -Adaption to Novelty -Social Competence -Emotional Stability
posted
Can't say in general. But I worked for over ten years as a direct care provider with folks with all kinds of disabilities and am hard-pressed to think of anyone who didn't have any assets.
In my case, I do well one-on-one. Groups are a problem, but less so than they used to be. I have a pretty good understanding of how my atypical body language can get in the way in a high stress (confrontational, like at Rand last week) situation and have ways to deal with that so I don't have to either avoid confrontation or come across as being too strident. But I think the situation through in advance and the ranges of responses I might have to deal with. That way I don't have to come up with a totally spontaneous response.
There's a bunch of other ways - both in personal and professional life - that I manage to navigate pretty competently in the psychosocial areas.
The standard literature is pretty dang depressing and is really some of the worst out there is special education/learning disabilities.
one more reason I can't say what people's assets are in general is that there is so much variation within the population of people with this label. It encompasses people with diagnoses of hydrocephalus, Williams Syndrome, brain injury, some people with Aspergers and etiology unknown - and that's far from a complete list.
The label kind of suggests a sameness or homogeneity that just isn't there.
This is why I have an item saying that my experiences and insights aren't meant to apply to everyone - but they undoubtedly can find some applicability to some people within the population.
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Was he referring to "Psychosocial Assets" specific to the diagnosis, rather than assets someone may have for other reasons?
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CT - yes. That's specific to the diagnosis.
But even as a kid, I could tell - usually - when something I did or said didn't go over well. Especially when it came to one-on-one interactions.
I don't know what the "other reasons" would be. Rourke and the neuropsychologists view this as a pretty global issue - much like Aspergers.
Near as I can tell, a lot of families and people with NLD have the same mixed feelings about Rourke that exist about Kanner in the Autism community. People really *like* having a name, but they don't appreciate the baggage that Rourke threw on top of it.
Part of the issue with Rourke was a selection bias in his early work. He projected the lifespan trajectory by finding adults with a neuropsych profile that fit the NLD profile.
The problem? Adults who are feeling successful, happy, have good relationships, etc. aren't generally going in for neuropsych evals.
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So you are thinking something along the lines of increased adaptive and problem-solving skills that you wouldn't have developed without the (can't think of good wording!) characteristic of NLD?
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Ct - For me, yes. But that changed across the lifespan.
I remember being pretty interested - even obsessed - about why people did things and reacted in certain situations. Tried to figure out patterns and maybe some rules governing behavior when it came to groups. Heck, to some degree I did it with important indivduals in my life.
I have a vivid memory from when I was four years old. Me and some of the neighborhood kids snacked on some berries off a large bush behind our rented house. Sometime after that, my mom decided it was time to give me the "don't eat berries off of bushes because they could be poison" talk.
I sat there and absorbed the information. I realized four things:
1. My friends and I were lucky. 2. I wouldn't eat berries off of any strange bushes. 3. However, since this bush hadn't killed us, I could keep eating these particular berries. 4. Decided not to mention numbers 1-3 to mom, who might have an irrational reaction to my reasoning.
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In my work now, the answer is definitely "yes" - to the extent that my work has any value (and I've been told it has) it is as much the result of the things I struggled with in life - understanding this strange culture I live in - as it is the things that are recognized strengths.
After many years of unintentionally annoying people, I've done well with finding ways to do it that wouldn't occur to most people for tactical reasons.
Example: At one time, I had to debate a well-known euthanasia and infanticide advocate. Common conventions generally hold that we would drop to first names. I didn't. I referred to him at all times as "Professor X" - so he had to refer to me as "Mr. Drake," sometimes stumbling when he did it. It threw him off of his game a bit.
Took me a long time to figure out those simple conventions. It didn't take me anywhere near as long to figure out how to use that understanding in creative ways. Posts: 4344 | Registered: Mar 2003
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Are these assets from struggle specific to NLD, or more generally applicable to any major challenges? It seems that a systematizing component (pattern-making) may be especially relevant, I think -- i.e., even though skills can be developed by facing just about any challenge, these particular skills may be yet more characteristic of NLD, right? (And presumably some other characteristics, such as the ASD, I'd guess.)
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Edited to add: It brings to mind that the "perseveration" of some with ASD characteristics could be reframed (certainly with at least as much accuracy) as "stick-to-it-ive-ness," a positive quality that can lead to good outcomes for those who are less likely to give up so easily as others.
quote:Are these assests from struggle specific to NLD, or more generally applicable to any major challenges?
Here's the thing. The "assets," such as they are, are really just a list of what Rourke and other neuropsychologists regard as preserved cognitive skills. There's really not an acknowledgment that some of the "assets" might be specific to NLD.
That's part of my beef with the literature. While there may be some people under this label who are totally oblivious to their inability to connect with people in a variety of situations, most of the people I've encountered are very aware of it and have at least attempted ways to bridge that gap.
That awareness, the ability to evaluate how and why things might be going wrong, is an asset.
Near as I can figure, I'm a pretty middle-of-the road example of a person with NLD, except that my verbal strengths are a lot higher than most folks. I'm sure that helped - it helps with my work and analyzing discourse - but it didn't help me deal with people.
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quote: It brings to mind that the "perseveration" of some with ASD characteristics could be reframed (certainly with at least as much accuracy) as "stick-to-it-ive-ness," a positive quality that can lead to good outcomes for those who are less likely to give up so easily as others.
there is also the well-known issue of obsessions. I have met few if any folks with autism or aspergers who got to be happy adults by having their obsessions stomped on by teachers and families. In many cases, there were smart families and teachers who figured out ways to use those obsessions as gateways into other areas of information and experience.
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quote:Are these assests from struggle specific to NLD, or more generally applicable to any major challenges?
Here's the thing. The "assets," such as they are, are really just a list of what Rourke and other neuropsychologists regard as preserved cognitive skills. There's really not an acknowledgment that some of the "assets" might be specific to NLD.
Ah, okay. (Seems odd to me, too, especially given the clarification.) I'm reading his discussion of the chart for NLD Content and Dynamics now. Thanks.
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quote:Not immediately grasping the novel dimensions of a situation, the person with NLD is likely to feel considerable uncertainty and even threat. This perception of threat, and the immediate judgment that he has no resources for dealing with it, would be expected to lead to anxiety. Continuing in this state, and perceiving no means for exiting the situation, his anxiety may rise to the level of panic. Such an "attack" has the psychic "benefit" of distancing oneself from the situation by focussing on inner turmoil rather than the threatening (external) event.
It is easy to see that persons with NLD are particularly prone to this sequence of events, ending in panic, because they prefer to deal with highly-overlearned situations. These are situations that they have encountered numerous times and to which they have become accustomed without any accompanying feelings of anxiety. Novel situations constitute drastic departures from these sorts of familiar, routine events and their attendant well-learned performance demands.
I think I've written here before about having to work through my body's overreaction to fairly low levels of anxiety. That is, this body, that is equipped with numerous neuromotor dysfunctions including tremor, will start to go haywire unexpectedly in a stressful situation - giving all the outward signs of a "panic attack."
I couldn't even ask a question in a class without it kicking up.
Luckily, I had a doctor at the time who really listened to what I was saying and prescribed a low dose of beta blockers for high-risk situations, which softened my body's response to mild anxiety.
Funny thing - a couple people with panic disorder have told me this is exactly how the whole thing started for them as well. Still others report experiences similar to mine - both people with neurological conditions and those who aren't identified with any.
It goes back to my point of looking for simpler explanations of a problem based on what we know is already going on - I suspect that my experience is not unique in the NLD population.
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Beta-blockers are pretty good for long-term prophylaxis against panic attacks in anticipated high-anxiety situations, and I've seen them used that way for years. They are of no use as a single dose in an unexpected panic attack, though, as the time to kick in is way too long.
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Except in my case (and that of others), "panic attack" is a misnomer. Even though the body is going wonky, I don't feel panic (ok, i did the first couple times before I figured out what was happening) - I get frustrated and annoyed. It's not "panic" that I'm feeling.
I've felt panic a very few times in my life - full body and emotional blowout - but it was triggered by understandable events.
The stuff the beta blockers deals with is a different animal entirely. The affective component is missing.
Edit to add: it's certain kinds of anxiety - and low-level. Exacerbated by whether or not I'm on my feet and the cognitive and motor demands at the time.
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Thought about this overnight. Originally, the doc put "performance anxiety" on the scrip as the situations the beta blocker was for.
That's about right. It's only when I have to do something.
For example, over the years, I noticed that my anxiety level on planes was getting higher - very unpleasant emotionally. But none of those physical symptoms I get in these other situations that I take beta blockers for.
I have anti-anxiety meds I take only when I fly now. I don't fly often enough to justify trying desensitization therapy. But it sure is nice to have the emotional edge taken off of my flight.
I find the beta blocker doesn't remove the general anxiety faced with dealing with an audience, interviewer or some other high-pressure situation - it just quiets my body down. Which is exactly what I want.
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It's impossible to clear one's head while one is simultaneously battling a body on full throttle.
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Actually, it's not quite impossible. Just very difficult. But what choice do you have if you're in front of a classroom (giving a presentation) or in front of an audience (doing a speech), except explain?
Explain through the facial contortions, ragged breathing, rapid heart beat and the sweating. Tell them not to panic, because I'm not. And that if they'll just listen and not get distracted by the visual display, the bodily stuff will subside in a few minutes. (It does - it's not a state my body maintains for very long. Just long enough to be a bloody nuisance.)
Been there done that. Could do it again. Prefer not to.
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Actually, I didn't overread it. It *does* leave less processing room in my head to have all that going on.
I've known people with panic attacks - some of them started this way, but where they ended up is very different than what I experience. For whatever reason, I didn't match my emotional state to what was going on with my body.
To me, that's probably a matter of my weird neurology and plain old dumb luck. Posts: 4344 | Registered: Mar 2003
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Well, as I was saying to my sweetie today, one of the good parts about growing older is that I know my body better -- limits, challenges, resources, shortcuts, strong parts, all of it. Thank heavens for familiarity. It allows the work to get done in the middle of all the regardlesses. Posts: 14017 | Registered: May 2000
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