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Rhonda,

I would be glad to give my thoughts to a list of your characteristics. Is

what you just wrote what you want us to give our comments to or did you want

to write something more systematic first? Either works. By the way, it is

not a new concept to do something like thsi in the autistic community. The

idea behind it is termed " self-diagnosed, peer-confirmed " . Let us know if

you want our opinion on the matter now, in which case I will spend some time

looking over your e-mail and what you said more carefully tomorrow (when I

finish my very last day of high school ever - what an exciting and mildly

terrifying prospect), or if you would prefer to wait till later and write

something else.

-Ari (who apologizes for not having the time right now to give what seems to

be your very heartfelt and extensive e-mail the response it deserves)

>

> I originally wrote this with voice rec software so hope it comes

> through OK.

>

> If I write a list of my characteristics, are there people on this

> list who would feel comfortable in providing, not a diagnosis, but

> some sort of affirmation or disconfirmation of the possibility of my

> having HFA or AS? I don't care which one it is, by the way, I am

> just trying to figure out if I'm on the spectrum or if I just have a

> random collection of other attributes that I'm choosing to hyperfocus

> on for some reason, to explain myself to myself.

>

> The thing is, I can come up with a pretty long list of quirks and

> habits I have that fit much of the diagnosis for HFA/AS. Some of it

> does not match up but lot of it does. But perhaps if I were worried

> that I had some strange disease, I might find markers of it and

> convince myself that I had it even if I didn't.

>

> I'm sitting here trying to get some work done. I think of myself as

> a person who does not " collect categories of things " as I have read

> on some web sites. Yet my job involves collecting categories of

> ideas, concepts, terms, names, all used in writing indexes to just

> about any kind of book whether I know the topic or not (as long as I

> don't have to know math). I am really very good at indexing

> (actually fairly sought-after), but I am completely unfamiliar and

> have no clue about any other aspects of the publishing industry

> including copyediting and proofreading. I can do all this with words

> even though I'm a strongly visual thinker. I can go back in the book

> if I forget to get a term and know which page it is on using my

> somewhat photographic memory.

>

> So I'm sitting here working, rocking in my chair, wearing earplugs so

> that I don't have to listen to my computer making that swishing

> sound, finding little patterns of concepts and terms in my current

> book. I'm wearing comfortable clothes that are loose fitting and

> don't bind and have the tags cut out. But now that I've said that I

> noticed that I can feel the knee of one of my pants and that the neck

> on my T-shirt is too tight even though I've pulled it out of shape

> over and over. Oh well. And also I am clumsy *except for when I'm

> playing the piano or doing something that I trained myself to do, but

> not in walking across my kitchen: I am sure to bump into the

> furniture and at least once a month I have some big bruise on my leg

> from bumping into something.

>

> But it could be that I'm just a person with low self-esteem, poorly

> socialized by my parents, physically touchy, and daydreaming so much

> that I missed out on some important info when I was a child and can't

> pay attention to where am going so that I bump into things. Also, if

> I rock, I can get a lot more work done than if I sit still.

>

> Also, there's that thing about being literal. Since I read a lot, I

> am very aware of what a metaphor is and can even use them myself and

> not get confused. But sometimes I clearly don't understand to not be

> literal. Here is a true story about that.

>

> A long time ago I worked for a company named " and . " I

> was supposed to be making widgets :-) but there wasn't very much to

> do so they had me answer the phone, for the first and last time!

> and founded the company in the late 1800s, so they were

> both deceased. The phone rang and somebody who was probably a

> salesperson and didn't know anybody in the company asked to speak to

> Mr. . " I'm sorry, but he's dead, " I said. So the person

> said, " Well, may I speak to Mr. ? " " He's dead, too, " I replied,

> very matter of factly. Now the person on the other end was totally

> silent, so I realized something was wrong, and I helpfully

> volunteered that he could speak to Mr. if he wanted to.

> Right after this happened I immediately realized I had said the wrong

> thing but it was too late! If I had had a couple of minutes to think

> about it, I would've realized that this was not a typical

> receptionist response! But I was telling the truth! My biggest

> worry was that somebody else in the company overheard me, which they

> probably did, because I don't remember answering any more phones....

>

> I was just looking at wrongplanet.net and I saw one article about

> what to say when somebody (NT) greets you. It actually made me very

> mad and made me start thinking maybe I don't want to have any normal

> friends. Maybe autistic ones would be OK. The whole point of the

> article was that somebody says " How are you? " you're supposed to

> answer with some inane comment about how well you're doing, and to

> keep it short, even if it isn't true. I think the article was serious

> and not a joke because it wasn't in the humor section. I always have

> the impression that " normal " people can't handle much information,

> even though we are the ones that are said to have a sensory

> integration problem (if I am a " we " ).

>

> There are other things. Thinking in pictures/movies is apparently not

> what NT people do. How can they DO it without SEEING something? I

> imagine (visually) that there's this empty space in their brains with

> just a few auditory words rattling by from left to right... it's sort

> of a brownish space, kind of FLAT and BLANK. (that's my actual

> picture, not saying it to be cute).

>

> I suppose the only true diagnosis of AS or HFA would be to have some

> sort of brain scan or maybe extensive IQ testing. With my current

> financial situation I can't justify that expense, so am hoping for

> some opinions here.

>

> Rhonda

>

>

>

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Ari,

Congratulations on getting out of high school!!!!!

I think it would help to have comments on just what I wrote, unless

it seems too vague. I could provide a list with examples based on

some diagnostic list like the DSM or one of the Wikipedia articles,

but I am having sore wrists and don't want to type/dictate too much

if I can avoid it.

I think also if people wanted to ask me some specific questions that

would be OK too.

I am into the idea of peer confirmation because I find often that

peers have insight into something that even the most educated

outsiders just don't get. Also, brain scans aside, I think that if I

provided the group with a list of my characteristics, it would be

about the same as sitting down with a psychologist and giving them

the same list and them looking in the DSM-IV and going " Yep, yep,

nope, yep... "

Rhonda

In AutisticSpectrumTreeHouse , " Ari N. "

wrote:

>

> Rhonda,

>

> I would be glad to give my thoughts to a list of your

characteristics. Is

> what you just wrote what you want us to give our comments to or did

you want

> to write something more systematic first? Either works. By the way,

it is

> not a new concept to do something like thsi in the autistic

community. The

> idea behind it is termed " self-diagnosed, peer-confirmed " . Let us

know if

> you want our opinion on the matter now, in which case I will spend

some time

> looking over your e-mail and what you said more carefully tomorrow

(when I

> finish my very last day of high school ever - what an exciting and

mildly

> terrifying prospect), or if you would prefer to wait till later and

write

> something else.

>

> -Ari (who apologizes for not having the time right now to give what

seems to

> be your very heartfelt and extensive e-mail the response it

deserves)

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> I think of myself as

> a person who does not " collect categories of

> things " as I have read

> on some web sites.

***

People with Asperger's are often more organized

than other people. This is exhibited in their

actions by collecting articles and in their

thinking by being logical and orderly.

***

***

> So I'm sitting here working, rocking in my

> chair,

***

Some people with Asperger's rock to

self-stimulate while others rock to calm

themselves.

***

***

wearing earplugs

***

Hyperacusis is the term for when sounds seem

louder than they actually are. Sensory

sensitivity causes sounds to be greatly

irritating or even physically painful.

***

***

I'm wearing comfortable clothes that are

> loose fitting and

> don't bind and have the tags cut out.

***

This is very common for people with Asperger's.

My disciplinary problems as a child were because

my clothes fit me and I felt them scratch and

bind. If they were oversized, I would have felt

better. Everyone comments how loose my clothes

are - including my children from the time they

were in kindergarten.

***

***

I am clumsy

***

Dyspraxia is uncoordinated or poorly timed

movement. Ideational dyspraxia is difficulty

planning a movement.

Ideo-motor is difficulty with the actual

movement.

It's like the world is rotating at a speed

contrary to our movement. We are out of sync with

our environment.

Symptoms include poor balance and coordination,

clumsiness, vision problems, perception

difficulties, emotional and behavioral problems,

difficulty with reading, writing, and speaking,

poor social skills, poor posture, and poor

short-term memory.

***

***

> *except for when I'm

> playing the piano

***

Apparently you are not the type of Asperger's

person who is tone deaf. We are alike, but we are

different from each other. You don't have to have

all the traits to have Asperger's syndrome.

***

***

> But it could be that I'm just a person with low

> self-esteem, poorly

> socialized by my parents, physically touchy,

> and daydreaming so much

> that I missed out on some important info

***

Low self-esteem comes when people indicate

something is wrong with you for bumping into

furniture. Why people pick on others is beyond my

understanding. Character and charity are far more

important than how you navigate across a room.

Maybe your poor socializing was inherited by your

parents who passed their Asperger's traits on to

you. Maybe they didn't socialize you because

Asperger's don't socialize like other people do.

People with Asperger's do not daydream and they

do not miss information. We absorb more

information than other people do, which is why we

get overwhelmed and meltdown or mentally appear

to be daydreaming. We are processing and we are

resting from the labor.

***

***

Also, if

> I rock, I can get a lot more work done than if

> I sit still.

***

This is a common Asperger's thing.

***

***

> Also, there's that thing about being literal.

***

Yes, yes. Asperger's people have honed

literalness to an elevated art form.

***

***

> and founded the company in the late

> 1800s, so they were

> both deceased. The phone rang and somebody who

> was probably a

> salesperson and didn't know anybody in the

> company asked to speak to

> Mr. . " I'm sorry, but he's dead, " I said.

> So the person

> said, " Well, may I speak to Mr. ? " " He's

> dead, too, " I replied,

> very matter of factly. Now the person on the

> other end was totally

> silent, so I realized something was wrong, and

> I helpfully

> volunteered that he could speak to Mr.

> if he wanted to.

> Right after this happened I immediately

> realized I had said the wrong

> thing but it was too late! If I had had a

> couple of minutes to think

> about it, I would've realized that this was not

> a typical

> receptionist response! But I was telling the

> truth! My biggest

> worry was that somebody else in the company

> overheard me, which they

> probably did, because I don't remember

> answering any more phones....

***

I don't understand the story. Offer somebody

[living] who can help the caller before he hangs

up and goes to the competition. I've answered

that way before. If somebody calls for an

employee who quit the company or has been

transferred to another department, I refer him to

somebody else who can conduct business. I don't

get the story.

***

***

maybe I don't

> want to have any normal

> friends. Maybe autistic ones would be OK.

***

You want caring, understanding friends whether

they are normal, autistic, blind or otherwise.

***

***

somebody says " How are you? "

> you're supposed to

> answer with some inane comment about how well

> you're doing, and to

> keep it short, even if it isn't true.

***

Yes, I find this awkward also. I have been

corrected enough times so that I know better, but

my natural inclination is to tell people what

they ask for.

***

***

I always have

> the impression that " normal " people can't

> handle much information,

> even though we are the ones that are said to

> have a sensory

> integration problem (if I am a " we " ).

***

You are a " we. " The rumor that we can't handle

information is a misunderstanding of people who

are not on the autistic spectrum. They are

comparing us to them, which is no more accurate

than comparing bicycles with motorcycles or with

rinse cycles.

***

***

.. Thinking in

> pictures/movies is apparently not

> what NT people do.

***

Not as much as people with Asperger's. Some NT

can, most need help.

***

***

How can they DO it without

> SEEING something?

***

They want to know how we do it with seeing

something.

***

***

> I suppose the only true diagnosis of AS or HFA

> would be to have some

> sort of brain scan or maybe extensive IQ

> testing.

***

I think psychologist give detailed questionnaires

about your childhood behavior and how you react

to certain life situations.

The brain scans are mostly experimental, and they

aren't sure what to do with the data yet.

Try these tests:

http://www.rdos.net/eng/Aspie-quiz.php

http://www.autismresearchcentre.com/tests/default.asp

http://www.mdlies.com/AQ

http://www.wired.com/wired/archive/9.12/aqtest.html

~Bonnie

__________________________________________________

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Bonnie wrote:

>Apparently you are not the type of Asperger's

>person who is tone deaf. We are alike, but we are

>different from each other. You don't have to have

>all the traits to have Asperger's syndrome.

and:

>People with Asperger's do not daydream and they

>do not miss information. We absorb more

>information than other people do, which is why we

>get overwhelmed and meltdown or mentally appear

>to be daydreaming. We are processing and we are

>resting from the labor.

First: what do you mean by " people with Asperger's " ? Are you a

believer in separate categories, Asperger's vs. Autism?

Second: it seems contradictory to say " we are different " and then

come out with a flat statement like " People with Asperger's do not

daydream.... " I, for one, definitely daydream. It's one of the ways

in which I " live in my head. " In the past (decades ago) I went

through a period of trying to break myself of the " habit " because I

thought I should be " more in touch with the world. " But daydreaming

seems to be useful for me in various ways. As you say, it is a way to

process (and to learn) and rest.

So often when I see someone laying down the law about " people with

Asperger's, " I react by feeling more and more autistic (as opposed to

the stereotype being posited for " Asperger's " )!

Jane

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Rhonda wrote:

>I originally wrote this with voice rec software so hope it comes

>through OK.

It came through okay, except that Yahoo is scrambling the order of

posts again. This one came to me *after* responses to it.

Jane

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>

>

> >>>I suppose the only true diagnosis of AS or HFA would be to have some

> sort of brain scan or maybe extensive IQ testing. With my current

> financial situation I can't justify that expense, so am hoping for

> some opinions here.

>

> Rhonda

> >>>

>

__._,_

>

Actually there isn't a scan that shows diagnosis. You can be 'self-dxed,' or

'peer-dxed'.

I was both, before I finally got a diagnosis in 2000.

K

> .___

>

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Funny you should mention that. While I can understand that would sometimes

be the case for some aspies because of other autistic tendencies, my

understanding (and experience) is that a substantial portion of us (perhaps

most) have executive functioning difficulties that make organization more

difficult. I can see how other autistic traits could encourage organization

in other contexts though, like the tendency to prefer order and logical

systems, for instance, if a person has the willpower to follow through on

that and become organized in practice (something that people of all

neurologies have difficulty with).

-Ari

>

> > I think of myself as

> > a person who does not " collect categories of

> > things " as I have read

> > on some web sites.

> ***

> People with Asperger's are often more organized

> than other people. This is exhibited in their

> actions by collecting articles and in their

> thinking by being logical and orderly.

>

>

>

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The ONLY thing I can organize is written material. My house is a

wreck. Before I met my husband I could pretty much find anything I

wanted even though the overall decor was " landfill. " But he MOVES

things around constantly. He even rearranges the furniture just for

fun. About the 3rd time he did that I just gave up and tried not to

notice the house, which makes it worse. I can't find most things.

Some things that I have " re-found " I hide in my office so I can sort

of know where they are. Anyway, mostly disorganized when it comes to

physical surroundings but organized thought processes.

Rhonda

> >

> > > I think of myself as

> > > a person who does not " collect categories of

> > > things " as I have read

> > > on some web sites.

> > ***

> > People with Asperger's are often more organized

> > than other people. This is exhibited in their

> > actions by collecting articles and in their

> > thinking by being logical and orderly.

> >

> >

> >

>

>

>

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While I do believe that there are distinctive subsets under the broader

autism spectrum (Asperger's being one of the many autistic neurologies), I

agree that the statement that " Asperger's people do not daydream " is

incorrect and very much an overgeneralization. As for missing information,

everyone, regardless of neurology, is susceptible to that. Even if we were

to theorize that certain kinds of autistic neurologies absorb every bit of

information there sensory organs can pick up (which I find questionable,

although I do believe that many types of autistic neurologies absorb more

than most people pick up), we would still sometimes " miss information " when

it wasn't picked up by our senses (our eyes did not see it, our noses did

not smell it, our ears did not hear it). I think that both of those

statements seem to generalize far too much. I couldn't comment on the

daydreaming thing, but as for sensory integration, I would say that saying

that many kinds of autistics pick up more information than others would be

more accurate.

-Ari

>

> Bonnie wrote:

> >Apparently you are not the type of Asperger's

> >person who is tone deaf. We are alike, but we are

> >different from each other. You don't have to have

> >all the traits to have Asperger's syndrome.

>

> and:

>

> >People with Asperger's do not daydream and they

> >do not miss information. We absorb more

> >information than other people do, which is why we

> >get overwhelmed and meltdown or mentally appear

> >to be daydreaming. We are processing and we are

> >resting from the labor.

>

> First: what do you mean by " people with Asperger's " ? Are you a

> believer in separate categories, Asperger's vs. Autism?

>

> Second: it seems contradictory to say " we are different " and then

> come out with a flat statement like " People with Asperger's do not

> daydream.... " I, for one, definitely daydream. It's one of the ways

> in which I " live in my head. " In the past (decades ago) I went

> through a period of trying to break myself of the " habit " because I

> thought I should be " more in touch with the world. " But daydreaming

> seems to be useful for me in various ways. As you say, it is a way to

> process (and to learn) and rest.

>

> So often when I see someone laying down the law about " people with

> Asperger's, " I react by feeling more and more autistic (as opposed to

> the stereotype being posited for " Asperger's " )!

>

> Jane

>

>

>

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Jane wrote:

>>Second: it seems contradictory to say " we are different " and then

come out with a flat statement like " People with Asperger's do not

daydream.... " I, for one, definitely daydream. It's one of the ways

in which I " live in my head. "

Me too. I have a high ability to fantasize.

>>In the past (decades ago) I went

through a period of trying to break myself of the " habit " because I

thought I should be " more in touch with the world. "

So did I! I also tried to break my habit of rocking, since the two are

related. I rock when I fantasize and listen to music. Intensely. Whenever I

stopped I would get highly stressed after awhile. It was only a few years

ago that I came to accept my need for this and not feel ashamed of it.

>>But daydreaming

seems to be useful for me in various ways.

Ditto again. For me it is a fun recreational activity as well as a stress

reliever. It is also a great way for me to brainstorm and figure out things.

Take care,

Gail :-)

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> Jane wrote:

> >>Second: it seems contradictory to say " we are different " and then

> come out with a flat statement like " People with Asperger's do not

> daydream.... " I, for one, definitely daydream. It's one of the ways

> in which I " live in my head. "

>

> Me too. I have a high ability to fantasize.

All my life I've fantasized. I create my own characters, first by

drawing them as a kid while the story went on in mind. Tried writing

them out, still do but less so, but it never comes across the same way

as the " movie in my head " . I can't get to sleep without going into

that world. If real life enters my head I'm up all night.

>

> >>In the past (decades ago) I went

> through a period of trying to break myself of the " habit " because I

> thought I should be " more in touch with the world. "

>

> So did I! I also tried to break my habit of rocking, since the two are

> related. I rock when I fantasize and listen to music. Intensely.

> Whenever I

> stopped I would get highly stressed after awhile. It was only a few

> years

> ago that I came to accept my need for this and not feel ashamed of it.

I've never heard anyone say that they did this. It was my favorite

stress reliever. Unfortunately, I did it so much (and so intensely)

that I now have degenerative discs in my neck (I have another type of

AS - Anklylosing Spondylitis - that interferes with spinal movement as

well which is a type of arthritis). The pain gets so bad it causes

migraines or migraine-like headaches (they make me throw up so I figure

that's what they are). I haven't been able to the rocking to music in

about 6-7 years. It's been hard on me as I've lost a major stress

reliever. About all I can do now is jiggle my feet/hands. It's not

the same thing at all.

>

> >>But daydreaming

> seems to be useful for me in various ways.

>

> Ditto again. For me it is a fun recreational activity as well as a

> stress

> reliever. It is also a great way for me to brainstorm and figure out

> things.

Ditto for me too.

a

>

> Take care,

> Gail :-)

>

>

>

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a wrote:

>... I now have degenerative discs in my neck (I have another type of

>AS - Anklylosing Spondylitis - that interferes with spinal movement as

>well which is a type of arthritis). The pain gets so bad it causes

>migraines or migraine-like headaches (they make me throw up so I figure

>that's what they are).

Have you tried a neck brace? I can't walk unbraced without getting a

killer migraine. It's all described here:

http://mjane.zolaweb.com/brace.html

Oh, and you can see the brace here: http://www.isn.net/~jypsy/AuSpin/a2p2.htm

Jane

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I can't express really right now how helpful that was. Not just the

neck brace thing, but all the other things you wrote in that essay. It

was a great read but also, it all makes sense. I've been through a car

accident this month and I was feeling down about things, what with the

X-Ray results. (That's when they found the degenerative discs. I knew

about the arthritis, just from knowing arthritis from my lower back.)

I'm definitely getting a brace. Thank you. :)

a

> a wrote:

> >... I now have degenerative discs in my neck (I have another type of

> >AS - Anklylosing Spondylitis - that interferes with spinal movement

> as

> >well which is a type of arthritis). The pain gets so bad it causes

> >migraines or migraine-like headaches (they make me throw up so I

> figure

> >that's what they are).

>

> Have you tried a neck brace? I can't walk unbraced without getting a

> killer migraine. It's all described here:

> http://mjane.zolaweb.com/brace.html

>

> Oh, and you can see the brace here:

> http://www.isn.net/~jypsy/AuSpin/a2p2.htm

>

> Jane

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I have 2 partly herniated disks, mild scoliosis (bad enough that I

recognized my own spine on x-ray. a nurse was holding up the x-ray in

the waiting room and trying to read the name so she could call the

next patient... i said " That's me. " and everyone was surprised. The x-

ray just looked like how I felt.) I also have HLA-B27 if you know

what that means. The genetic marker for Ankylosing Spondylitis. But I

don't have the Ankylosing Spondylitis, I am fairly certain. I had a

battery of tests done a few years back because of how much pain i was

in, with a lot of paresthesias. ok, i can't remember how to spell

that. anyway, my bad posture, maybe due to dyspraxia that i've been

reading about on the LD and autism lists, doesn't help.

Rhonda

> > >... I now have degenerative discs in my neck (I have another

type of

> > >AS - Anklylosing Spondylitis - that interferes with spinal

movement

> > as

> > >well which is a type of arthritis). The pain gets so bad it

causes

> > >migraines or migraine-like headaches (they make me throw up so

I

> > figure

> > >that's what they are).

> >

> > Have you tried a neck brace? I can't walk unbraced without

getting a

> > killer migraine. It's all described here:

> > http://mjane.zolaweb.com/brace.html

> >

> > Oh, and you can see the brace here:

> > http://www.isn.net/~jypsy/AuSpin/a2p2.htm

> >

> > Jane

>

>

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Yes, I have the HLA-B27 marker. I too, had extensive tests done to

determine if I had Ankly-Spon (that's the nickname one doctor I was

talking to referred to it as) 12 years ago, including a complete body

scan where they inject radioactive fluid into your body and then

proceed to X-Ray every last part of your body. Took half a day.

That's when they discovered the arthritis in my lower back, which

wasn't a surprise because 6 years before that I'd had a ruptured disc

(plus sciatica and a screwed up hip) which is the whole reason I ended

up where I was in the first place. Previous to the body scan my GP had

me have all these blood tests to determine what arthritic conditions I

was prone to (as I had come back complaining of pain returning more

than usual to my lower back) and that's when I found out I had the

HLA-B27 marker.

At that time it was determined that Ankly-Spon was not affecting me

yet. But it is now. Symptoms I experience are iritis (inflammation of

the iris), back pain at night (the whole spine), more stiffness in the

mornings with some mornings worse than others. Some days I can barely

get out of bed. I have extremely sensitive ribs, spine, shoulder

blades, shins, thighs, etc,., as in extremely sensitive to the touch.

Having someone press against my vertebrae can make me black out/throw

up, which has happened. While my none of my vertebrae are fusing, as

always but more so, my back doesn't have much flexibility, but there's

more than one reason for this. The area that concerns me the most are

both of my hips and SI joints. I've done nothing to injure them

(although my left had been affected when I had my ruptured disc...I'm

not remembering the name of the main muscle that goes down through the

hip, but that's basically what was affected at the time).

Ankly-Spon is usually more subtle (especially during onset) and harder

to detect in women than it is in men. Men are more prone to spinal

fusion, whereas with women it's more likely to adversely affect their

SI joints, hips, legs, etc,. Myself, I've always had bouts with

iritis, but lately it's been more frequent and my eyes are extremely

sensitive. My own tears burn. I get that sensation of sand being

thrown into my eyes right before they go bloodshot. I think that to

have HLA-B27, whether or not you develop " classic " Ankly-Spon, means

that a person might have some symptoms of the condition all of their

life. Such as my mom, who also has HLA-B27 marker. She's had hip

surgery, has arthritis from her hips down and has much more frequent

bouts of iritis than myself.

a

> I have 2 partly herniated disks, mild scoliosis (bad enough that I

> recognized my own spine on x-ray. a nurse was holding up the x-ray in

> the waiting room and trying to read the name so she could call the

> next patient... i said " That's me. " and everyone was surprised. The x-

> ray just looked like how I felt.) I also have HLA-B27 if you know

> what that means. The genetic marker for Ankylosing Spondylitis. But I

> don't have the Ankylosing Spondylitis, I am fairly certain. I had a

> battery of tests done a few years back because of how much pain i was

> in, with a lot of paresthesias. ok, i can't remember how to spell

> that. anyway, my bad posture, maybe due to dyspraxia that i've been

> reading about on the LD and autism lists, doesn't help.

> Rhonda

>

>

> > > >... I now have degenerative discs in my neck (I have another

> type of

> > > >AS - Anklylosing Spondylitis - that interferes with spinal

> movement

> > > as

> > > >well which is a type of arthritis). The pain gets so bad it

> causes

> > > >migraines or migraine-like headaches (they make me throw up so

> I

> > > figure

> > > >that's what they are).

> > >

> > > Have you tried a neck brace? I can't walk unbraced without

> getting a

> > > killer migraine. It's all described here:

> > > http://mjane.zolaweb.com/brace.html

> > >

> > > Oh, and you can see the brace here:

> > > http://www.isn.net/~jypsy/AuSpin/a2p2.htm

> > >

> > > Jane

> >

> >

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....I'm

> not remembering the name of the main muscle

> that goes down through the

> hip, but that's basically what was affected at

> the time).

***

The piriformis?

http://www.spine-health.com/topics/cd/piriformis/pir02.html

http://www.ninds.nih.gov/disorders/piriformis_syndrome/piriformis_syndrome.htm

http://www.rice.edu/~jenky/sports/piri.html

I am sorry about your spine. Collapsing vertebrae

are setting off my piriformis. Sometimes I can't

walk. I stagger going up and down curbs so that I

hope I don't get ticketed for public

intoxication.

~Bonnie

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> ...I'm

> > not remembering the name of the main muscle

> > that goes down through the

> > hip, but that's basically what was affected at

> > the time).

> ***

> The piriformis?

>

> http://www.spine-health.com/topics/cd/piriformis/pir02.html

> http://www.ninds.nih.gov/disorders/piriformis_syndrome/

> piriformis_syndrome.htm

> http://www.rice.edu/~jenky/sports/piri.html

>

> I am sorry about your spine. Collapsing vertebrae

> are setting off my piriformis. Sometimes I can't

> walk. I stagger going up and down curbs so that I

> hope I don't get ticketed for public

> intoxication.

>

> ~Bonnie

Yes, that's it. Sometime during the course of my back injury, this

muscle was distended somehow. I think it had to do with an exercise I

was given to do for my back. The symptoms seemed to come on suddenly.

I remember the initial symptoms were quite scary. I'd be lying on the

couch (my usual position back then seeing as I couldn't sit, stand or

walk without going into a 90% angle from the lower back), and then I'd

try to move, usually to get off the coach or to re-position the weight

off my other hip. A seriously gripping pain would occur in my

hip/butt. It felt like my hip was going to fall off. I had no control

over my hip, no strength, lots of pain. Once this started, it just

kept getting worse (chronic) and it took longer to heal than my back

did (the ruptured disc). I had a serious case of sciatica that was

especially painful in my butt area, and all the way to my toes.

I can relate to it complicating walking. The hip affected did not want

to cooperate, even after I could finally straighten out my back. The

pain could be constant or it could relent for awhile and then suddenly

grab me while walking. Not a cramp, but like a cramp in how it could

attack " just like that " and stiffen, making movement difficult or

impossible.

I empathize with it interfering with walking, and making you look like

a drunk! What can they do for you? I was told there was nothing that

could be done for my degenerative discs. I'm sure I'll be experiencing

the collapsing someday down the road. Something more to look forward

to...I certainly don't want my piriformis to act up again, it was

godawful!

a

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Your description of the sciatic nerve and the

piriformis is similar to my situation.

I quickly exited a neuro-surgeon's office when he

talked about surgery because it seemed too

drastic at this point in my condition.

My primary doctor insisted on giving me muscle

relaxant (which made me drozy and gave me

nightmares) because over the years I have

developed an intolerance to aspirin resulting in

my not being able to take anti-inflammatories and

all pain medication except tylenol. She kept

telling me to come back in three months before

she would Xray or scan my back until my insurance

ended so now I don't know exactly what is

happening with my degenerative discs and facet

joints and S.I.

The Feldenkrais Method of movement

http://www.feldenkrais-resources.com/backgroundinfo.htm

took me out of severe pain and enabled me to

walk better; then I moved away from my

practitioner, and I don't like the touch of

anybody here where I now live.

I found a cranio-sacral

http://www.iahe.com/html/therapies/cst.jsp

therapist who made the sciatic activity

completely go away, and now I can walk all right

if I walk slowly and stop to rest whenever I need

to.

This whole mess is scarey because it can lead to

permanent paralysis and incontinence. Last month

something happened to the disc in my thoracic

spine that made my arms heavy and burn and my

hands went numb.

Everybody has something. My thing is observing

parts of my body malfunction and go numb.

~Bonnie

- - -

> I empathize with it interfering with walking,

> and making you look like

> a drunk! What can they do for you? I was told

> there was nothing that

> could be done for my degenerative discs. I'm

> sure I'll be experiencing

> the collapsing someday down the road.

> Something more to look forward

> to...I certainly don't want my piriformis to

> act up again, it was

> godawful!

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>

>

> > Jane wrote:

> > >>Second: it seems contradictory to say " we are different " and then

> > come out with a flat statement like " People with Asperger's do not

> > daydream.... " I, for one, definitely daydream. It's one of the ways

> > in which I " live in my head. "

> >

> > Me too. I have a high ability to fantasize.

>

Hmmmm My daydreams are quite elaborate, including Bigfoot, and as you say

a myriad of

characters, they may be English, they pop from doorway threshholds, they

quite amuse me.

They make me smile and have served me my entire life. some have recurring

roles.

I dream of folks I don't know as well.

K

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I am NOT a doctor, just a fellow sufferer. I have one exercise that

has really helped when I remember. Oh yeah, forgot to say, this si

for sciatica and the piriformis muscle/s. Lie on the floor, cross one

leg over the other like you were going to sit with your ankle on your

knee. Just ankle to other knee, not all the way crossed. Gently!!!

push your knee down with your hands. Go slow to see how much you can

or should do. Someone who had major back issues gave me that tip. It

seems make some space for the involved nerves.

Also, if you can take heat and if it is located anywhere near you try

hot yoga or Bikram yoga. www.bikramyoga.com Ignore the parts about

certification and lawsuits if they are still on there, so you don't

decide against it right away! I did this kind of yoga before the baby

was born and it CHANGED MY LIFE physically. I had a lot more symptoms

than I do even now. I have not done it more than 3 times this year

and still am relatively OK compared to what I was in 2003. I think

the combination of heat and doing the yoga gently (even if the

teacher thinks you should do more as mine did) helps a LOT. I am NOT

the yoga type. A friend was doing it and I was like " whatever " and

then he said " It loosens up my tendons and ligaments " so I said " Tell

me more! " I told him I was so stiff i couldn't do it and he

said " that's the type of person who SHOULD do yoga " so I did it for

maybe several months and sort of got my body back. better than it was

before anyway. Of course I don;t guarantee it will work for you. If I

could just get to it more tha once every 2 months I think I would

not have some of the tendinitis i have now.

I can't take meds either...

Rhonda

>

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I don't know if it's helpful, or even wise, and it might even be rude, but

I'm going to interject some comments from my own experience. I forget who

the original poster was; I'm not good on names.

It was 21 Jun 2006, when Bonnie commented:

> > I think of myself as

> > a person who does not " collect categories of

> > things " as I have read

> > on some web sites.

> ***

> People with Asperger's are often more organized

> than other people. This is exhibited in their

> actions by collecting articles and in their

> thinking by being logical and orderly.

> ***

I tend to think I appear organized (get lots of comments on that in

Reviews at work) because I have to be more organized, or I get thoroughly

confused.

> ***

> > So I'm sitting here working, rocking in my

> > chair,

> ***

> Some people with Asperger's rock to

> self-stimulate while others rock to calm

> themselves.

> ***

I'm sitting on my porch in my rocking chair as I type this, but it's hard

to rock and type at the same time! ;-)

> ***

> wearing earplugs

> ***

> Hyperacusis is the term for when sounds seem

> louder than they actually are. Sensory

> sensitivity causes sounds to be greatly

> irritating or even physically painful.

> ***

I'm not so much sensitive to sounds, as easily distracted by sounds and

lights, and irritated by being distracted. (More of an ADD thing, maybe?)

> ***

> I'm wearing comfortable clothes that are

> > loose fitting and

> > don't bind and have the tags cut out.

> ***

> This is very common for people with Asperger's.

> My disciplinary problems as a child were because

> my clothes fit me and I felt them scratch and

> bind. If they were oversized, I would have felt

> better. Everyone comments how loose my clothes

> are - including my children from the time they

> were in kindergarten.

> ***

Since I'm currently laid off, I sometimes forget and spend the whole day

in the sweatpants and t-shirt I sleep in. I feel uncomfortable when I'm

Actually Doing Stuff and still in sweats, but I'm constantly having to

adjust my jeans or whatever because they get uncomfortable on me. I often

don't participate in " Casual Friday " at work, because to me jeans are -not-

more comfortable; I prefer my nice, soft work clothes.

> ***

> I am clumsy

> ***

> Dyspraxia is uncoordinated or poorly timed

> movement. Ideational dyspraxia is difficulty

> planning a movement.

> Ideo-motor is difficulty with the actual

> movement.

>

> It's like the world is rotating at a speed

> contrary to our movement. We are out of sync with

> our environment.

>

> Symptoms include poor balance and coordination,

> clumsiness, vision problems, perception

> difficulties, emotional and behavioral problems,

> difficulty with reading, writing, and speaking,

> poor social skills, poor posture, and poor

> short-term memory.

> ***

Isn't that a lot of stuff to fit under dyspraxia? Seems like there ought

to be more categories for that stuff, although I can see where it all

might impact dyspraxia...

> ***

> > *except for when I'm

> > playing the piano

> ***

> Apparently you are not the type of Asperger's

> person who is tone deaf. We are alike, but we are

> different from each other. You don't have to have

> all the traits to have Asperger's syndrome.

> ***

Amen to that. Didn't know tonedeafness was considered an Asperger's

trait. I sometimes think my " savant skill " is singing kareoke. Not sure

it's really a savant skill sort of thing, but it seems like I can be

wholly comfortable up behind the microphone, joking and socializing and

performing, then leave the mic and not be comfortable talking to anybody.

> ***

> > But it could be that I'm just a person with low

> > self-esteem, poorly

> > socialized by my parents, physically touchy,

> > and daydreaming so much

> > that I missed out on some important info

> ***

> Low self-esteem comes when people indicate

> something is wrong with you for bumping into

> furniture. Why people pick on others is beyond my

> understanding. Character and charity are far more

> important than how you navigate across a room.

>

> Maybe your poor socializing was inherited by your

> parents who passed their Asperger's traits on to

> you. Maybe they didn't socialize you because

> Asperger's don't socialize like other people do.

>

> People with Asperger's do not daydream and they

> do not miss information. We absorb more

> information than other people do, which is why we

> get overwhelmed and meltdown or mentally appear

> to be daydreaming. We are processing and we are

> resting from the labor.

> ***

Wasn't there a website or a book or something, " You Mean I'm Not Lazy,

Crazy or Stupid? " I can see where processing information can appear to be

daydreaming, though. Although, given time to digest the info I've been

given, I often come up with a better way of doing whatever the info

describes -- which isn't daydreaming, it's working!

There's a story in Dale Carnegie's " How to Win Friends and Influence

People " that is kind of on point. A reporter is being given a tour by

Carnegie (the steel guy) of the offices at his plant. While

they're walking by one office, the reporter notices one fellow with his

feet up on his desk, his hands behind his head, staring at the ceiling.

The reporter asks Carnegie " Why don't you tell that guy to get back to

work? " To which he replies, " He was in just that position when he came up

with an idea that saved me millions of dollars. I want him that way! "

(Not exact quotes, just from memory.)

> ***

> Also, if

> > I rock, I can get a lot more work done than if

> > I sit still.

> ***

> This is a common Asperger's thing.

> ***

I think it derives from the distracting aspects of sensory input. When

I'm rocking in my chair, my body is only doing that one, repetitive thing,

and I don't have to think about all the other sensory input I'm getting

from my body. Stimming isn't exactly the right word, of course.

> ***

> > Also, there's that thing about being literal.

> ***

> Yes, yes. Asperger's people have honed

> literalness to an elevated art form.

> ***

I don't necessarily think it's about literalness, at least not for me. I

tend to assume that people know what I'm thinking, so I try to fit

whatever they say into my own thoughts, which doesn't always work.

> ***

> > and founded the company in the late

> > 1800s, so they were

> > both deceased. The phone rang and somebody who

> > was probably a

> > salesperson and didn't know anybody in the

> > company asked to speak to

> > Mr. . " I'm sorry, but he's dead, " I said.

> > So the person

> > said, " Well, may I speak to Mr. ? " " He's

> > dead, too, " I replied,

> > very matter of factly. Now the person on the

> > other end was totally

> > silent, so I realized something was wrong, and

> > I helpfully

> > volunteered that he could speak to Mr.

> > if he wanted to.

> > Right after this happened I immediately

> > realized I had said the wrong

> > thing but it was too late! If I had had a

> > couple of minutes to think

> > about it, I would've realized that this was not

> > a typical

> > receptionist response! But I was telling the

> > truth! My biggest

> > worry was that somebody else in the company

> > overheard me, which they

> > probably did, because I don't remember

> > answering any more phones....

> ***

> I don't understand the story. Offer somebody

> [living] who can help the caller before he hangs

> up and goes to the competition. I've answered

> that way before. If somebody calls for an

> employee who quit the company or has been

> transferred to another department, I refer him to

> somebody else who can conduct business. I don't

> get the story.

> ***

Maybe (having been a receptionist) it's the Gatekeeper job being referred

to here. Receptionists are Gatekeepers in that they aren't supposed to

let Just Anyone talk to the Important People. With all the telemarketers

out there these days, a receptionist is often not supposed to refer anyone

without a specific contact name. If it's a customer, pass them to sales.

Anything else, pass them to personnel.

Most often, if somebody is asking for the owner and doesn't know the

founder is dead (for example), they've got some half-baked telemarketing

list they're working from, in which case, a receptionist should not pass

that person through. But my tendency to be honest and helpful means I may

give them a name or a person -- because that's an honest answer -- rather

than give a non-helpful response.

These days, I -am- a telemarketer (laid off at the moment), and I'm often

frustrated and angered by receptionists who respond that way, even though

I know that's exactly how (rudely) they've been trained to respond. I

feel like they're treating me like a rude and dishonest person, and they

ought to -know- that I'm not ( " theory of mind " thing, I guess). I've been

written up twice for being rude right back.

> ***

> maybe I don't

> > want to have any normal

> > friends. Maybe autistic ones would be OK.

> ***

> You want caring, understanding friends whether

> they are normal, autistic, blind or otherwise.

> ***

True, although I'd have to consider myself rather " high maintenance. " I

know it takes more work to deal with me, so I don't often expect people to

try to be my friends, and I more appreciate any friends I can acquire.

> ***

> somebody says " How are you? "

> > you're supposed to

> > answer with some inane comment about how well

> > you're doing, and to

> > keep it short, even if it isn't true.

> ***

> Yes, I find this awkward also. I have been

> corrected enough times so that I know better, but

> my natural inclination is to tell people what

> they ask for.

> ***

I often recall a comedy routine where the comic suggests replying to " How

are you? " with " Not unwell, thank you! " which he thought was pretty funny.

Other favorites of mine are " sitting up and taking nourishment " or

" cognizant as to time, place and person " from the medical world -- though

those get me odd looks. Not that I don't get plenty of odd looks, anyway,

so I might as well.

> ***

> I always have

> > the impression that " normal " people can't

> > handle much information,

> > even though we are the ones that are said to

> > have a sensory

> > integration problem (if I am a " we " ).

> ***

> You are a " we. " The rumor that we can't handle

> information is a misunderstanding of people who

> are not on the autistic spectrum. They are

> comparing us to them, which is no more accurate

> than comparing bicycles with motorcycles or with

> rinse cycles.

> ***

I think we tend to have more information, often stuff NT's aren't even

noticing. And yes, we do handle it, though not, perhaps in the same

manner an NT might.

> ***

> . Thinking in

> > pictures/movies is apparently not

> > what NT people do.

> ***

> Not as much as people with Asperger's. Some NT

> can, most need help.

> ***

I notice that when I've had to memorize stuff, I memorize based on the

" sound shapes " of the words, the way they feel to say rather than

spelling, so that when I've done theatre I tend to to every performance

the same. I may not even be thinking much about the words mean anymore,

but it sounds like I am, because I say them with the same expression --

here's a word for you, might be a word, anyway -- autoecholalia.

--

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Pegasus Mail Client and Mercury MTA <http://www.pmail.com>

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It was 21 Jun 2006, when Ari N. commented:

> While I do believe that there are distinctive subsets under the broader

> autism spectrum (Asperger's being one of the many autistic neurologies), I

> agree that the statement that " Asperger's people do not daydream " is

> incorrect and very much an overgeneralization. As for missing information,

> everyone, regardless of neurology, is susceptible to that. Even if we were

> to theorize that certain kinds of autistic neurologies absorb every bit of

> information there sensory organs can pick up (which I find questionable,

> although I do believe that many types of autistic neurologies absorb more

> than most people pick up), we would still sometimes " miss information " when

> it wasn't picked up by our senses (our eyes did not see it, our noses did

> not smell it, our ears did not hear it). I think that both of those

> statements seem to generalize far too much. I couldn't comment on the

> daydreaming thing, but as for sensory integration, I would say that saying

> that many kinds of autistics pick up more information than others would be

> more accurate.

I suspect I initially pick up a lot of information, then start trying to

organize it or make sense of it while continuing to listen, then miss

stuff that doesn't fit into what I thought I'd already figured out. Goes

along with that whole literalness thing -- if I'm already receiving a lot

of literally true info, I shove everything else I receive into that same

literally true organization, even if it wasn't meant that way. Verbal

monotropism, to coin a phrase.

--

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