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krex
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14 Dec 2008, 2:45 am

Danielismyname wrote:
krex,

There's quite a bit of research done in outcome, treatments, and also how they relate to each other; you just have to scour PubMed [or whatever] for the papers. Adults and/or children, it's all there.


Well, I assume you've done quit a bit of scouring, so what is your conclusion. Do you believe that the current treatments are actually helpful for autistics or would they achieve the same level of achievement without that intervention and just allowed to develop on their own.

As to Pubmed....They have interesting paragraphs but I can't afford the subscription fee for the full articles...also, reading research papers on my computer makes my brain hurt. Also, I apparently am googling the wrong questions because I am not finding research about this topic any where . I also can't find any numbers on the percentage (1 in 150 people are on the spectrum), of those are HFA/LFA/other ?( Personally, I don't like these labels as I am sometimes high functioning, other days less so and HF in some areas and LF in others .) Have you found a breakdown in levels of function in autistic population and a "whole" ?


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earthmonkey
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14 Dec 2008, 3:16 am

Well, I don't think I would've been given an LFA label as a young child, as when I had the delay in communicative speech and extreme sensory sensitivity and very extremely rigid and very picky eater (wouldn't eat anything green, then would only eat green things) and aloof socially, I didn't have much in the way of tantrums and was potty trained at about the usual time, stuff like that.

When I was older, about 7, I was mostly nonverbal and not responding to my name (including often spending half to the whole school day not understanding or doing instructions and just staring at the wall, or sorting beads), except with short burst of being very eloquent, in rehearsed and recited things I'd spent the whole day practicing in my head. I had nearly daily tantrums that lasted at least three hours on average, pretty aggressive, never spoke more than 7 words in the cafeteria the whole year. Lots of echolalia and scripts, virtually no eye contact.

Was diagnosed age 10 with Asperger's, probably because I said my first words at age 1, even if communicative phrases didn't develop until a little past age three. So it wasn't a general delay, just more like it started, then got atypical (echolalic and stuff).

Now I'm about 19, and I'm maybe 60-80% verbal, though this includes echolalia, scripts, non-communicative stuff. Haven't taken the trash out in four months because I don't know how (fortunately most food I eat is from a cafeteria) and when I moved from one state to another I forgot that when you ride the bus that you have to pull the cord to get the stop.

I'm limited in where I go to only those places that are right on the bus line because I get lost otherwise even if it's very near, and crossing busy streets has proven a danger because I almost get hit by cars a lot. I am terrible at arithmetic but can understand more advanced math like calculus and number theory a lot better. I have difficulty with self-injury and perception of pain as well as time perception, and executive dysfunction as well. So I may get there an hour late because I am brushing my hair but when I get there do a physics problem easily without getting tripped up.

I have no idea what labels that these traits would give me; frankly I think it would depend on the day and the situation - if they saw me at my dorm room or doctor's office, it would probably be on the lower side, if in the classroom answering physics questions, probably on the higher side, because in that setting it is easier for me to communicate - yet I still encounter significant barriers, just that it's a lot more conducive an environment than, say, a cafeteria.

But really my ability to function, even in a given environment, cycles so quickly even in a given day, that even though my only official label has been HFA, I spend whatever amount of time in whatever amount of difficulty. Sometimes, that means I'll spend most time not speaking with short times of being eloquent interspersed, or other times that may mean I'll spend most time not needing many routines and then suddenly needing to go to an old routine.


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Danielismyname
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14 Dec 2008, 3:57 am

Teaching children the conventions of social interaction at an early age, will aid them in their ability to adapt to society better; they'll still be autistic, of course, but they will have a head start than if they weren't taught these things when they enter the social and school system (which everyone is forced into). Speech therapy will aid someone who is having communicative difficulties. However, this does all depend on what and how severe the individual is and what they actually have to work with; the same for teaching someone mathematics when they have a math-specific learning disorder.

It's known that a decent percentage of those with Autistic Disorder will improve without treatment--they don't know why, and treatment has been shown to offer a better outcome for those who receive it. I, for example, improved in the area of communication via speech therapy, as well as many, many days of help from my mother and teachers; it didn't help me with socializing, but it made the [somewhat] grammatically correct words I write now. Without such, I wouldn't have improved, as since I don't care (see: autism), I have no incentive to learn these things as an adult [or child] because they don't interest me (hence, since I was a child, I was far easier to handle and "mould", unlike now where I'm a stubborn one in relation to doing things I don't want to do).

Percentages: 1/4 have Autism (HFA/LFA), 1/4 have AS, and the other 1/2 have PDD-NOS (which is all over the place in severity). That 1 in 150 is a lower-limit; the same study had an upper-limit of 1 in 600 (or it may've been 1 in 500) for the spectrum--people seem to focus on the lower-limit, when it's just as likely the upper-limit is the right one when choosing between the extremes.

Wing's "triad" of social ability is an ok predictor of outcome for the whole: aloof, passive, odd and formal, with aloof being the most severe [and common] and offering the worst outcome, where most with such have Autism, and odd/formal offering the best outcomes (formal being the best). Those with odd or formal social behaviour tend to have AS. It all fits neatly when one looks at the whole spectrum.

Aloof is the indifferent individual who is in his or her own world
Passive is the person who lets others interact with him or her, but doesn't seek it out
Odd is your stereotypical one-sided and verbose individual with AS who lectures people on end about his or her favourite subject
Formal is the polite individual who tries to stick to the social rules he or she has learned, but doesn't really understand them



Danielismyname
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14 Dec 2008, 4:02 am

earthmonkey wrote:
... I didn't have much in the way of tantrums and was potty trained at about the usual time, stuff like that.


Neither did I, for the most part. I had tantrums in a few specific instances (and they were quite extreme), I was still LFA based on everything else (my IQ would have been subnormal due to the verbal disability; I got kicked up to HFA when my verbal ability improved).

HFA and LFA are based purely on IQ threshold.



lexis
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14 Dec 2008, 5:13 am

I don't suppose or know if I was ever LFA but I did have a speech delay, cognitive delay etc.

I had terribly poor theory of mind. I literally had no idea that people were sentient- I didn't relate to them any differently than I did objects.

What I'm going to post next will be make me seem like a complete psycho but I really didn't know I was doing harm at the time. Up until I was about 7 or 8 I had virtually no social restraint and approached people randomly to touch their clothes or hair out of pure curiosity- I thought nothing about how they felt, in fact when I was younger and did it more frequently I'd still continue to feel the texture of a dress, someone's hair etc. even if they would tell me to stop (although due to my auditory processing sometimes I literally couldn't understand them). When I was about four- and still mostly non-verbal, in my own world (as it all goes) I was on Brighton Beach with my mother and looking, touching those large rocks that replace the sand there. Out of nowhere I then decided it would be interesting to drop one on her head as she was sitting down- just to see what would happen; straight after that I simply walked away again, ignoring her as if nothing had happened.

No LFA I have ever spoken to has mentioned doing this but a professional who has worked with autistic children was not surprised at all. I can only conclude that I had an exceptionally poor theory of mind? I only saw people as noisy objects- I got attached to them, but only as I did other objects. Strange. I think my theory of mind improved gradually, unlike my speech which improved rapidly over the period of a year. My cousin was similar, albeit less likely to approach people- more passive but still definitely regarded people (including me) as objects. As I grew older I seemed to change from viewing people as having no minds to instead viewing people as having a perception identical or similar to mine- I remember as a 7 year old thinking- 'why can people see themselves without looking in the mirror but I can't?

I hope no one thinks I'm a psycho after this...:( As an adult do feel very guilty now...

Lol I've had to type this out twice because my internet went hours ago when I tried to reply. :x



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14 Dec 2008, 6:00 am

You didn't know you were hurting anybody. Actual psychos know and don't care. So you're not a psycho. For the record. :P


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lexis
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14 Dec 2008, 7:12 am

Heh, well that's good to know. Thanks.

Quote:
Now I'm about 19, and I'm maybe 60-80% verbal, though this includes echolalia, scripts, non-communicative stuff. Haven't taken the trash out in four months because I don't know how (fortunately most food I eat is from a cafeteria) and when I moved from one state to another I forgot that when you ride the bus that you have to pull the cord to get the stop.


I can relate to some of that. A lot of what I say comes through what I've rehearsed beforehand or if all else fails, echolalia. I spend literally every hour of the day reshearsing what I'll say in what situation- it's like it comes naturally to me now- and it's not merely anxiety either. When I do end up in an unexpected sitation, sometimes I literally cannot speak or say more than a few words. But I have heard of people with aspergers going through the same experience, so it can't be too unusual. I do have trouble generalizing too- I used to have virtually no self-help skills but I've learnt some the hard way. A lot of my 'lower functioning' days are merely a response to sensory overload- if everything is too loud and too bright and my sense of touch is too sensitive I just can't cope. But I'm sure nts would respond in the same way if their senses suddenly started playing up like that.



ReGiFroFoLa
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14 Dec 2008, 7:14 am

And I have it all the opposite - as child I was high functioning, but since two years I am gradually becoming low functioning...



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14 Dec 2008, 7:21 am

i was low functioning as a child, i showed many of symptoms (naming self injury, and speech problems) , and was seen as ret*d by my teachers and relatives..

Professionals were talking to my mother, asking her to seriously consider admitting me into specialized institutions, to have better future.

Luckily my mother never listened to them. Now i am pretty high functioning, i got a job, and now in my senior year to get my bsc degree in engineering. i look, act, behave like any 'normal' person, and i do get better grades then most of my peers. i still have some minor speech and communication problems, and i find it hard to deal with people, but i am working to fix these issues..



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14 Dec 2008, 11:36 am

Looking at it, my skills jump all over the place over time. I mean in some ways some things have hardly changed but in other ways things are very different, and things go up and down almost constantly.


Quote:
HFA and LFA are based purely on IQ threshold.


Yeah and I was last tested at overal 85, which is low normal, that score obtained answers with typing type.


Quote:
Aloof is the indifferent individual who is in his or her own world
Passive is the person who lets others interact with him or her, but doesn't seek it out
Odd is your stereotypical one-sided and verbose individual with AS who lectures people on end about his or her favourite subject


All of these are, depending on the time (both different times of a day or of a week, and also there are times in my life more commonly one or another), I switch between these descriptions. I probably fit the last one most when I was being diagnosed (and was diagnosed with Asperger's) but I was probably acting more aloof when being diagnosed when autism 8 years later. Now I have another neuropsych eval comoing up lesse what the y make of that!


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14 Dec 2008, 1:22 pm

The several different manifestations of social behaviour are somewhat...ambiguous. I'm assuming they mean in a peer to peer setting, otherwise it wouldn't offer a genuine picture of the individual's deficit.

So, picture a group of peers outside of a mechanical setting (schoolyard, work break, neighbours, whatever), and how would you act?

I've been commonly mistaken as the overly formal and stilted type when seeing professionals, as I'm ok in such an environment; they're always taken aback over how aloof/indifferent I actually am in all areas of socializing in person. In a doctor's room, on the 'net, or to my mother/sister/dog, I'm quite good; they see the polite and lecturing individual [who may just say an inappropriate thing now and again], but everyone else gets the mute and indifferent man.



earthmonkey
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14 Dec 2008, 10:49 pm

Danielismyname wrote:
The several different manifestations of social behaviour are somewhat...ambiguous. I'm assuming they mean in a peer to peer setting, otherwise it wouldn't offer a genuine picture of the individual's deficit.

So, picture a group of peers outside of a mechanical setting (schoolyard, work break, neighbours, whatever), and how would you act?

I've been commonly mistaken as the overly formal and stilted type when seeing professionals, as I'm ok in such an environment; they're always taken aback over how aloof/indifferent I actually am in all areas of socializing in person. In a doctor's room, on the 'net, or to my mother/sister/dog, I'm quite good; they see the polite and lecturing individual [who may just say an inappropriate thing now and again], but everyone else gets the mute and indifferent man.


Oh, I was talking about all different interactions I could think of: parents, teachers, siblings, peers, older and younger people, etc. I am not just primarily, for instance, aloof with peers and passive or lecturing with parents, but all of these, switching, with all of these people at different times.


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14 Dec 2008, 10:59 pm

I was diagnosed in 1961 when autism was usually a label given to those with an intellectual disability. I was considered to be a very quiet child and a very late bloomer so by today measure I would have been considered to be low function. In my teens I was considered to be amongst the best improved students at school and as such I would be today's measure as being high function. But my social skills were just as appalling as if I stayed low function all the time.



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14 Dec 2008, 11:54 pm

My biological mother had low functning autism. She could speak but could not have an actual conversation with someone and had to be in a group home. Even before I was born everyone knew something might be "wrong" with me and some people wanted to have me aborted. I did not speak actual words until I was four. I was first labled with PDD because back at the time there was no actual label for someone like me. I was diagnosed with AS at seven and again at nine when I was in the mental hospital. After my parents took me out to homeschool me, people find it hard to believe that I am actualy autistic until I have a meltdown.



lexis
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15 Dec 2008, 4:53 am

ReGiFroFoLa wrote:
And I have it all the opposite - as child I was high functioning, but since two years I am gradually becoming low functioning...


I've heard that severe regression is possible. I've only experienced a mild regression myself- only people who know me well really notice.

I dunno, has anyone read this before:

http://www.autistics.org/library/more-autistic.html

I thought it quite interesting. Some of those points really explain why I started to regress since I was around 16.



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15 Dec 2008, 10:22 am

Getting out on your own can trigger it--suddenly being overloaded with everything you have to do. Actually I think that should be a big part of autism education; you should already know those things so the transition doesn't hit you so hard.


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