Imagination and Asperger's
Hoping to find some input/experiences, both from parents of Asperger children, and adults who have Asperger's, themselves.
(And apologies, in advance, for how long this is. I can never "short-version" anything; what you see here is the humiliating result of me trying to be "concise.")
I've read, over and over and over, that "lack of imagination" is an important trait of Asperger Syndrome. Most of the incidences in which I've read this, have seemed to describe a lack of theory of mind, AND a lack of imaginary play. Occasionally, I've seen the different definition - that "lack of imagination" refers only to theory of mind, and an inability to easily join the imaginary play of others. And once or twice, I've seen "vivid imaginary world" listed as a trait of Asperger's.
But most of the time, there's that insistence that children (and presumably adults) with Asperger's have little to no imagination.
Here's my confusion, with that:
It's rather a long story, but after quite a few years of believing my children had somehow just inherited my "weird personality," I finally looked deeper into their odd behavior, and realized that all three seemed to fit the Asperger profile. I knew that, if that were true, then there was no denying where they'd gotten it, and took a long, hard look at myself, before realizing "Oh my god, it's been staring me in the face, my whole life." Rather embarrassing, that one was.
We went to the school district for help in evaluating the kids, got no real help (very small, sort of podunk district), and have now started independant evals for them, one by one. I have a daughter from my first marriage who is 7, and currently expected to qualify for the gifted program, so she'll have an IEP next year. My current husband and I have two more children together - a 4 1/2 year old son, and 3 year old daughter. Our youngest daughter is not in preschool, and seems too young to accurately evaluate. But our son starts Pre-K this fall, so we decided to start his evaluation process, first. No answers there, yet - his pediatrician agreed that what we've described sounds like Asperger's, and made an appointment with a pediatric neurologist, for next month.
As for me, I decided to get evaluated, myself, in the hopes it might help with our children's diagnosis. Just had the first in a series of interviews at a nearby psychological services center, so I don't have any answers yet, either, but to put it simply....nothing I've come across in my entire life has ever seemed truly familiar or relatable, until I started researching Asperger's. Never once, did I ever get the feeling of "being on the same wavelength" or anything of that nature, until I started reading the experiences of other people with Asperger's. It was absolutely astonishing, to finally NOT be the only one having a particular experience.
So, every single piece of Asperger's fits, for me, and though our kids are slightly different from each other, they all share many, many overlapping Asperger traits. Except for one little thing....
Lack of imagination.
I have the biggest, wildest imagination of anyone I've ever known, or I did, until my older daughter came along - hers may be even more powerful than mine. I spent most of my childhood in that imagination; onlookers often could not even tell that I was playing, because much of my "play" involved sitting mostly still, moving small objects or toys, giving every impression of being zoned out and doing nothing. While on the inside, I was deep in that rich imaginary world.
My oldest daughter does the same thing, now. I see her walking aimlessly through the yard, quietly talking to herself, and when I ask what she was doing...good God. She ejects a MASSIVE storyline involving her huge "invisible world," in which she leads multiple parallel lives and keeps perfect track of hyper-detailed environments, histories and cultures. It's more than a little hard to explain, heh, and needless to say, the "invisible world" is her current obsession.
Her younger brother and sister have less-unusual obsessions, but do show the same wonderful imaginations. The little ones share an interest in The Lion King, and with that, they do the more stereotypical, by-the-book acting out of the movies, because they already have a plot to work with. But in other play, they make up their own stories, with ease (though they're often awful stories involving lots of death and horror, heh). They can't share imagination very well - generally they begin playing together very nicely, then end up screaming over who's violating whose rules, or who isn't sharing ("sharing," to these kids, means "you have to give that to me, now"). But in parallel play, at least, they are All Imagination, All the Time.
They don't always get jokes. They almost never get non-literal speech. They can't fathom anyone not having the same thoughts as themselves, and have trouble understanding how anyone else can be bothered/hurt by something they don't feel. They are genuinely shocked, every time they get into trouble for doing something insane, because they never see it coming. They rarely have interest in other kids' ideas or play, though they will sometimes borrow ideas from each other, as they all have similar tastes.
But imaginary play? Please. These kids will have adventures with pieces of lint. Actually, my eldest daughter frequently HAS gotten in trouble at school for exactly that.
And that's the one sticking point, for me, with Asperger's: the imagination issue. I worry, a little, about bringing in kids with a whole host of issues and oddities, across multiple developmental areas, and having a diagnostician tell me "Ah, but they have too much IMAGINATION!" Yes, I do realize that may be a *bit* paranoid.
From what I've read, it seems obvious that the whole "lack of imagination" trait is something that begs redefining, or elimination, from screening checklists, as it seems about as offensively inaccurate as stating "People with Asperger's have no feelings."
What I'm wondering, is: For those of you who have been diagnosed yourselves, or had your children diagnosed, how much of a factor did "lack of imagination" play? Was this something the doctor even looked for?
And for those of you with Asperger's Syndrome: Just how big are YOUR imaginations? And what sort of imaginary play did you engage in, as a child? Or as an adult, if, like me, you still spend a good amount of time in your own head?
Look into Nonverbal Learning Disorder. Its almost very similiar to aspergers in many ways but has one differentiating factor: folks with NLD often have elaborate imagination and can participate in imaginary play. Alot of what you are describing I once did as a child...I have NLD.
With that being said, lack of imagination is no longer a defining characteristic of AS, it is more like something that is common. Also they have found out imagination has less to do with theory of mind, and more to do with other traits.
Lack of imagination used to be make or break with regards to AS, pre-dsm-IV. Now though a kid can have an elaborate imagination and still have AS. Lack of imagination should no longer play in a diagnosis. But it may just be your kids have NLD as supposed to AS, and the services and assistance for NLD are identical to AS...if you need it.
Hopefully this was helpful.
(BTW Everything you are saying about your kids sounds like how I was when I was younger. Extremely elaborate fantasy worlds, imaginative play, etc, but problems with socialization with other kids. Many of the problems of NLD do not show up until elementary school, such as motor coordination, visual and spatial deficits, etc.). I would try to get them tested by a pediatric neurologist and psych, or pediatric neuropsychologists, who is educated in both LD and ASD. Differentiating between the two can be tough, but the earlier they are diagnosed the better.
Non-verbal Learning Disorder was one of the things I considered, when trying to figure out if the kids (and my) "weirdness" really *fit* anywhere. I'd never heard of it, before then, so at first it was "YES!" Especially given that I unearthed my old paperwork from my own Gifted evaluation, and saw the 29 point gap in my Verbal and Performance IQ scores (Verbal was the highest, naturally).
But comparing/contrasting NVLD and Asperger's, a lot of pieces didn't fit, with the former. That little paragraph where I mentioned some of the traits our three kids share may have been unclear - that wasn't a list of AS traits, but just a few of the imagination-related difficulties they have. A list of all their Oddness would be much, much longer, lol.
But, as an example of things that didn't fit with NVLD...
They all toe walk, and they all have odd physical movements/stims. Our oldest daughter mostly seems to stim from anxiety - rocking, shaking, flapping and weird leg movements when she's in a meltdown - but we've noticed more subtle things she'll do, just from excitement. She sort of bounces on her toes, a good bit, and relentlessly "fiddles" when she's deep in thought.
Our son is constantly moving, to the point that people peg him as ADHD, but he can and will sit perfectly still, with deep focus, at times. He just seems to enjoy sort of flopping about against furniture and the like, much of the time. He sways back and forth when he watches tv, and sometimes spins. And when he tries to explain himself, lecture, or just gets a little nervous, he brings his hands up near his face and does these odd, stiff, finger movements, which I do, as well (just not usually near my face).
Our youngest daughter mostly just rocks, seemingly both for pleasure and stress-relief. She's also sucked her fingers and sniffed her blanket her entire life - unsure if that's an AS thing, or just a bad habit thing.
They all lecture, although the three year old is less capable, and is more aloof than her siblings, so she doesn't share her interests as often. None of them do the really *impressive* sort of lecturing, yet - they kind of suck at the "little professor" thing, heh, but they'll go on and on and on about their interests, with lots of repetition and zero real interaction. They do not care if you're paying attention, and though their eye contact often looks okay in general, when they lecture, they usually stare up and to the side, showing visible difficulty accessing/organizing their thoughts if you make eye contact with them.
Weirdly enough, the two oldest have been IQ tested (just the short KBIT 2) and their scores were sort of the reverse of my own - that test shows crystallized vs fluid intelligence, and with them, their fluid was far beyond their crystallized. But the 4 1/2 year old does not yet read (he has no interest in learning any words that do not describe The Lion King, animals or dinosaurs, heh) and our 7 year old reads pretty well, but has not yet gotten excited about reading for pleasure. So, that likely influences both their test scores and the poor quality of the content of their lectures, lol.
They're all just a big old bag of Weird, and it's been eye-opening for me, to say the least, finding out just HOW MUCH of what I always took for granted as "normal," or just my own personal weirdness actually fits into the Asperger profile. Half this stuff I really-seriously thought EVERYONE did/felt/experienced; it never occurred to me to consider otherwise.
Relatedly, it was not until last year that I discovered not everyone thinks in constant pictures/video. My husband shares some of my oddness, but is not a visual thinker. He can do it, and uses that type of thinking to a lesser degree, but what goes on in his head is VERY different from what happens in my own.
We stumbled onto that subject last year and, after comparing experiences, I became so upset that I couldn't stop obsessing over it for quite some time; it STILL gives me the creeps. "What do you MEAN, there are no pictures in your head? What do you look at? Think about ____, right now. Okay, what's happening in your head? DARKNESS AND A WORD FLOATING IN SPACE? THERE'S DARKNESS IN YOUR HEAD? EMPTY BLACKNESS LIKE DEEP SPACE? OMG, HOW CAN YOU LIVE LIKE THAT?"
Heh. I'm learning not to compare mental experiences with others.
well I'm not AS diagnosed yet, but I take that as granted. I've been diagnosed with ADHD and could easily get a dyspraxia diagnose.
No I don't have NLD, cause lots of things like my bad rote memory skills, (I am/was forced to understand the logics behind to be able to remmember something).
Yet when I was a kid I had a very vivid imagination, was never playing with other kids but had a world in my head, not as detailed as your kids. And was never NEVER talking about it, actually I was never sharing anything from my personal world with anyone, never felt like doing it (and the few times I did the bullies took advantage).
Good luck with your kids and with your journey!
Diana
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Dianitapilla
My son is tentatively diagnosed AS by the school (we haven't pursued it any further since this gets us all we need for him) and sounds just like your kids.
Most people with experience on AS are using the complex definitions about imagination that you cited earlier; as in difficulty buying into someone else's imagination, that sort of thing, not not having any of their own. Some AS kids will mostly repeat back ideas they've absorbed but others are wildly creative. Whether or not they should really share the label is up for debate, I guess, but the things that really stand in their way educationally and functionally seem to be the same, and it is crossing those bridges that tends to drive diagnosis.
When working with the schools, I think the label is far less important than getting the right accommodations in place. I am very results driven in that way. Labels are only as good as what they get for you.
All that said, I really think the AS label fits for my son. He may not have everything on a list, but he is very much like the AS individuals here, and listening to them helps me understand him. It has been like a key for us, discovering AS.
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Mom to an amazing young adult AS son, plus an also amazing non-AS daughter. Most likely part of the "Broader Autism Phenotype" (some traits).
Believe it or not toe walking and stims do occur with NLD. I stim like crazy. Alot of parents on the NLD sites do note both toe walking and stims. Stims don't get mentioned as much with NLD for reasons unknown to me. Partially because you don't need to stim to have NLD.
With regards to lecturing...that is one thing that NLD and Aspergers share. Look at the literature and you will find it is common with both. From what I remember until our vision is trained, people with NLD have difficulty reading.
I do the up and to the side thing to maintain the illusion of eye contact professionally. Its cheap...but it gets me by. I don't look people in the eyes though normally. This has been noted since I was little.
I should stress...all of the higher functioning Autism Spectrum Disorders (SPD, HFA, NLD, PDD-NOS and of course AS) share traits with each other and manifestations can be highly individualized. It sounds like it would really take a qualified diagnostician to figure out what is going on, and even then they might get it wrong. The reason to get a diagnosis is often related education accomidations and services, and this is what you should honestly focus on.
Also with regards to rote memory...that IS a characteristic of both NLD and AS, if the rote memory is poor, it is probably something other than AS or NLD since it is a frequently noted asset of both.
This is me too, i'm almost 25 and i still have an EXTREMELY big imagine and very different way of seeing and understanding the world and... reality I'll often go off on a big thought process describing it to my husband and will often end by seeing him reaction and saying "that's one of those things i shouldn't tell people right?"
My daughter also has a huge imagination although not as deep as mine was/is, she doesn't go to her own world like i did as a kid, but she does HAVE her own world.
LOL. I've had that same conversation, with my husband.
Starrygrrl: I think it was you who mentioned rote memory and problems reading?
No, on problems with reading, and YES, on rote memory.
I was a more disturbing child than my own, possibly because my parents really didn't interact with me much. I memorized every word I heard, and was naturally attracted to language. So, at two, I could (and would, heh) repeat every single commercial on television, and often dialogue from tv shows my mother watched regularly. Soon after I turned 2, I spoke like an adult, but a very strange adult, because I'd learned it all from television, and usually retained whatever accents I'd heard it in. To this day, I still absorb more than I want to - I pick up accents unconsciously, and am often driven mad by dialogue or music I can't get out of my head.
Reading-wise, I taught myself to read at 3, and never slowed down. I had many interests I obsessed over, and still do, but nothing ever surpassed that love affair with language. Oh, and though I've never learned comprehension from listening, my comprehension of what I read is very high.
As for the kids, they do not seem to have that peculiar verbal prowess I showed. Our 7 year old is one of the better readers in her first grade class, but she does not read years ahead of her age the way I did, and she has not yet grasped just how fun reading can be - it's just "okay," to her.
Our 4 1/2 year old son really should be reading, and I feel bad for not working with him harder. He has taught himself to read words related to his interests, but is the kind of child who does not learn well, unless HE does it, on his own, so we've never pushed him. He has no problems with what little reading he does, however.
All three kids memorize naturally. They like repetition very much, but do not need it, to learn; they just have excellent, if eccentric, memories. The younger two are more prone to repeating dialogue they hear, while our oldest is more visual, and likely to remember everything she sees.
As an example, our 7 year old daughter recently remembered a movie she'd seen once, last year, scene-for-scene. While this morning, our 3 year old daughter informed me that a zebra is a mammal, but is not a predator (learned from her Leapster Animal Genius game). She has no idea what "predator" or "mammal" mean, lol. Our son spends much of his day giving us facts like this, with no real idea what he's talking about.
DW:
I'm with you, on the use of labels. On one hand, I do want them to have an explanation for why they are different, so they don't grow up like I did, just assuming all their "brilliance" is a mistake, and they're really secretly ret*d.
But the biggest reason I started looking into what could be going on, and moving towards diagnosis, were the problems we saw cropping up. Our daughters are better at blending in; our son is NOT, lol. He sticks out like a sore thumb, wherever he goes. We wanted to know what was going on, and help him be able to fit in better, if and when he wants to.
Our oldest daughter has had a miserable first grade year, because she was unlucky enough to get an ignorant, seemingly neurotic teacher who's spent all year trying to cram her into a mold she will never fit. A diagnosis, and resulting IEP, could help protect her in the future, from similar teachers. At the very least, it would be documented proof that our children are not brats or discipline problems, but simply kids with very different brains. That same daughter is also starting to have social issues - she WANTS to be friends with everyone, but just doesn't understand other kids, at all.
As for our youngest daughter, I say she's just fine. Maybe if I were more normal, myself, I would be bothered by the fact that she has no desire to make friends, or even play NEAR any child that is not her siblings, much of the time, but to me, that sort of outlook makes perfect sense.
I was like these kids, and I had zero support and truly hideous parents. That made life much harder than it ever should have been, but I think it turned out alright in the end. So, technically, I'm sure our kids could bumble through on their own, if they had to.
A diagnosis, though, can help make certain they never DO have to make do with what they have. I have no desire to somehow "fix" them, but it would undoubtedly be better if they spoke with proper syntax/understood better what people were saying to them (speech therapy), understood how to get along and make friends (social skills classes) and in our son's case, could follow basic directions and NOT spin/flop/twitch across a room, constantly, lol (occupational therapy, with a side of sensory integration).
Meanwhile, we're currently faced with school district professionals who, while very nice and seemingly desiring to help, are still agape at the kids' test scores, and convinced that they have too many gifts to be on the spectrum.
Seriously-seriously. They did an initial bare-bones screening on our son and pronounced him too functional for help. Then explained that, by showing us how high he scored in fluid intelligence, and saying he was a genius who had just not yet "caught up."
Our daughter has not even gotten that much screening yet. They did her K-BIT 2 first, saw how crazy-high her fluid intelligence scores were, and immediately said they did not expect her to need help, either, without even having looked at her developmental skills.
Again...they were so, so NICE, while being offensively ignorant, that we decided to just take everything out of their hands, and not be nasty about it. But I swear, lol...I was THIS close to saying "Oh, you're perfectly right; what was I thinking? Autism Spectrum kids are NEVER smart, much less gifted....by the way, can I quote you on that?"
Unfortunately, the school has to see potential qualifying factors before they will begin any type of assessment. In my son's case, no had seen any until we asked. Not the first time, but the second. Or was it the third? THEN they started to say, "well, maybe we could look at .... or .... "
Once you have an outside ASD diagnosis, that should be a qualifying factor all on it's own. But if you want to get started before that, you will need to get them looking harder.
So, what might you have as qualifying factors?
- Pragmatic Speech. How efficiently and apporpriately the child uses language and is able to speak in turns, etc. AS kids fail this one dramatically.
- IQ v. performance gap. I've having trouble remembering the details here, but I think it went something along the lines of testing IQ, noting how the child SHOULD perform, and then comparing that to actual performance. A 160 IQ child performing at a 120 IQ level would qualify for services, for example. Or, at least, that is my memory of it. It is usually pretty easy to see that an AS child isn't performing at the level of his or her perceived IQ, since most AS kids have roadblocks that harm school performance.
Unfortunately, the simple fact that my son could not write was NOT a qualifying factor. Doesn't make much sense when you think about it, because it is a huge physical disability with him, but so it goes.
Schools have an obligation to help kids access the curriculum, that is their catch phrase, so you get help if something stands in the way of that; you don't if nothing apparently does. Schools are cash strapped and don't want any more special needs students than they absolutely have to have, they really don't go looking for these kids; you have to push them. Even in the best of schools.
Good luck. We all want our in kids in the right school happy and thriving. Whatever it takes to get there - do it.
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Mom to an amazing young adult AS son, plus an also amazing non-AS daughter. Most likely part of the "Broader Autism Phenotype" (some traits).
Imagination... uuuh, well, I think there are different areas of imagination. Like, the intricate imaginary world thing, yes, I have that going on, and I'm good at clearly imagining being in a situation. (Like flying or something, I can imagine the sensation perfectly.) Buuut I'm not very good at making up really original stuff. I need something to base it on, sort of. I guess it's tied to how AS people are supposed to be all literal and like facts. It's sort of like.. without a foundation, there are too many options, or not enough structure or something.
But actually now that I think about it, if I just drift off and let the idea evolve, I can get to some really weird places. But somehow I don't really like to do that because it's like, I feel like my mind is working incorrectly or something. Like, I follow such obscure paths that it ends up not making any sense. But I'm lying again, LOL, sometimes I love the things I come up with that way. But usually they're pretty stupid.
Maybe I should just shut up and stop contradicting myself.
Also: "Oh my god, it's been staring me in the face, my whole life."' lol same here. D:
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"You gotta keep making decisions, even if they're wrong decisions, you know. If you don't make decisions, you're stuffed."
- Joe Simpson
Not really all that relevant, but hilarious...
We were listening in during much of the testing - as much as I could pay attention to while filling out assessments, anyway (which they never even looked at before making a call, of course). The "Riddles" portion of the K-BIT 2 test was absolute gold:
Question: "What is pink, in your mouth, and holds your teeth in?"
Our son: "MCDONALD'S HAPPY MEALS!"
Question: "What is white, sprinkled on food, and comes from the deep, deep sea?"
Our son's answer: "CROCODILES!"
Yeah, we were banging our heads on the table, thinking "Oh my God, they must think he's a moron." But laughing so hard we were crying, because that's how all the kids are - brilliant and OMGWHATISWRONGWITHTHEM, all at once. Then once he hit the more standard vocabulary section, he quickly gave up and began just repeating everything they said, in this very confident tone, as if he just knew he was getting everything right, lol.
He did not qualify for Gifted, because the standard for his age group here is 3 Standard Deviations above the norm, and he could only manage 2 SD, overall. But he bombed the verbal (crystallized) section so fiercely, that you can imagine what his peformance (matrices/fluid) section looked like, to have brought him up to 2 SD. The same ladies who seemed to wonder why we'd even asked that he be checked for Gifted quickly began falling all over themselves to try and explain just how gifted he would be, when the rest of his brain caught up.
Which of course got a wry "So you're saying there's a huge gap in the progression of some of his skills? Well isn't THAT odd..." from me.
HAHA! That is so cute!! !
Wiggleyspider, i'm like that too. For example, i imagine all sorts of strange takes and bends of reality, in that regard i can totally go to my own world and have an imagination to rival the strongest... but when it comes to something my mum used to teach us as kids to help us go to sleep, she would tell us to imagine ourselves somewhere like for example, by a lake etc. i cannot do that at all. I've also never been able to conjure up an accurate image of someone close to me in my mind (eg. my mum or husband) they always look quite different in my mind and then the image is very unclear and goes away quickly.
I guess it shows that it has to be somehow based in reality or something... it's all very confusing.
I don't know where the lack of imagination thing came from. Almost everyone on my dad's side of the family has Asperger's, and so do I, and we're all very imaginative- or at least creative- people. When I was a kid I didn't even have problems sharing imaginative play with other kids. In childhood, the big activity for me and my friends was running around the house or backyard lost in some elaborate fantasy world that we made up off the top of our heads. It was usually based on a book or movie.
An interesting extension of the imagination question is the area of dreams. I read somewhere that people with autism often have very vivid dreams. My dad and I both identified with that, and when I asked some of my Aspie friends they related some of the extraordinarily elaborate dreams they've experienced. It makes me wonder what about having autism causes these things.
Tiffofdoom, we are in the process of currently getting our son, he's 4.5 y/o, assistance with AS. We are dealing with Dr's who don't want to admit there is a problem, luckily our school district is helping us, after 2 initial meetings, they agreed that he needed help, more for his speech delay than anything else, but it's a start.
As for your questions, I'm alot like how you described yourself. While doing the research for my son I realized that I too fall into alot of the chatagories for AS also. For me also it all finally made alot of sense, instead of just being 'anti-social' which bothered me alot because I crave friendship I just cann't keep friends, which isn't "anti-social' at all. As a kid I had huge imagination and acted on it all the time. I wanted to become a writer at a young age, to give it an escape, but found that I have problems putting thoughts to paper. I had/have vivid dreams, so vivid that when I wake up sometimes I'm confused as to what's going on. I still spend alot of time in my head lol, I'm also the type to think of odd things, like random alternate realities, for example, if I have a near miss on the freeway driving, I will think "wow, myself on the other side didn't miss" (I'm strange in that regard lol) I will also hold elaberate practice conversations in my head, practicing how I will talk about a subject to a specific person before I actually do, if I ever in fact do it, to be sure I won't screw it up in some way, I accept that I'm socially inept about alot of things.
As for thinking in 3D or pictures, are you telling me that people out there in "Normal-Land" don't do this???? For reals?? I do, even when I read, I can visualize what I'm reading as I'm reading it. I actually have a hard time talking to people over phones when they are trying to describe something, if I cann't see it, I tune it all out until I can see it, not just a physical picture but in my head too. I recently had a conversation with my mom over my ability to look at clothing and disect it in my head and create my own patterns, she kept telling me that this isn't normal, that most people cann't do that, even experienced seamstresses. I kept telling her "What do you mean people cann't do that? It's not that hard, it's pretty simple." She kept having to tell me that No it wasn't normal and that it wasn't that simple, most people just cann't do that, which just made me feel even more freakish.
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