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CrazyCatLord
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13 May 2012, 9:06 pm

I'd rather tell people that I'm autistic than telling them that I have AS. When people hear "Asperger's", they either imagine a condition that gives people awesome geek powers and turns them into the next Einstein or Bill Gates, or they think of it as a mental disease that causes sufferers to say grossly inappropriate things all the time and laugh at funerals. I'm neither of that. I'm no Einstein and no inconsiderate dolt. I'm autistic.



AspieOtaku
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14 May 2012, 1:28 am

I have been Diagnosed with both AS and HFA either way I am stuck on the spectrum with an unbreakable ball and chain ancoring me to it. :lol:


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14 May 2012, 10:16 am

I have seen so many threads with this kind of title on WP and since you only joined WP in Feb and this is your 8th post, I wondered if perhaps you are a troll?

I'm going to give you the benefit of the doubt and suggest you read some quality Asperger's reference books to answer this question.


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Sora
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14 May 2012, 10:53 am

Verdandi wrote:
I have a lot of trouble with explaining that I am in pain to people, however. Even when I get to the ER because I'm in pain, I somehow fail to explain how much pain I'm in as I rarely get helpful treatment. I was in the ER with a cluster headache a year and a half ago, and I didn't get something to help with the pain. My explanations left the doctor with the assumption that the headache (which left me bedridden for a week) wasn't even my primary problem.

Not the same thing as having severe issues with speech, obviously, but being able to speak doesn't mean always being able to communicate clearly or reliably.


Thanks for writing this, a lot of people seem to ignore how huge a problem this can be.

Concussions, "just" being very sick, ligament ruptures, broken limbs - even when I can talk fluently I can't communicate that I am seriously hurt.

I can say that I am hurt but I cannot say how much (I also tend to underestimate the pain and cannot reliable notice even what normal people call terrible pain). If I simply respond that I am hurting badly (and point out what hurts) people don't seem to understand. They usually say that I am fine and people won't help me get to a health professional or the professional sends me home without any kind of examination and treatment, explaining that I'm fine and overreacting and too sensitive.

(And, last time I checked, concussions and ligament ruptures were quite serious and perfectly real.)

So, no, speech doesn't automatically solve the issue of receiving help when help is needed to deal with an injury or other kinds of pain. Assistance to help with this is also hard to come by, most people assume that if you can talk or write, you'll be just fine.


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14 May 2012, 11:14 am

Sora wrote:
Verdandi wrote:
I have a lot of trouble with explaining that I am in pain to people, however. Even when I get to the ER because I'm in pain, I somehow fail to explain how much pain I'm in as I rarely get helpful treatment. I was in the ER with a cluster headache a year and a half ago, and I didn't get something to help with the pain. My explanations left the doctor with the assumption that the headache (which left me bedridden for a week) wasn't even my primary problem.

Not the same thing as having severe issues with speech, obviously, but being able to speak doesn't mean always being able to communicate clearly or reliably.


Thanks for writing this, a lot of people seem to ignore how huge a problem this can be.

Concussions, "just" being very sick, ligament ruptures, broken limbs - even when I can talk fluently I can't communicate that I am seriously hurt.

I can say that I am hurt but I cannot say how much (I also tend to underestimate the pain and cannot reliable notice even what normal people call terrible pain). If I simply respond that I am hurting badly (and point out what hurts) people don't seem to understand. They usually say that I am fine and people won't help me get to a health professional or the professional sends me home without any kind of examination and treatment, explaining that I'm fine and overreacting and too sensitive.

(And, last time I checked, concussions and ligament ruptures were quite serious and perfectly real.)

So, no, speech doesn't automatically solve the issue of receiving help when help is needed to deal with an injury or other kinds of pain. Assistance to help with this is also hard to come by, most people assume that if you can talk or write, you'll be just fine.


This is very true.
I once had a fibula fructure in a training and I was unable to speak and unable to respond to people who offered help, so they finally assumed that it was not too bad.
I walked home with a fractured bone.
My partner was not home until the next day, so I was home and not seeing a doctor and I did not call my partner either to tell and waited for him to come home the next day and he finally took me to a hospital.
As a child I had a big ward under my foot hurting when I was walking.
I was not able to tell and took while taking a bath a scissor and cut it out myself (the blood vessels went quite deep into the foot) and my mother finally found out, because the water was turning red from the blood coming out.
But I did a good operation, it never came back.


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14 May 2012, 11:50 am

Oh, I have such a history. You just reminded me of how many times I have been in pain and not even been able to talk about it, or just ignored it.

I had something that felt very much like a gall bladder attack, and was so painful I was nearly in tears. And this was going on for days, but I couldn't get the words out to tell anyone. Fortunately, nothing bad came of it - whatever it was resolved itself.

I was stabbed in the leg with a pencil in the first grade, but I never mentioned it. I finally saw a doctor when my mother noticed I was barely able to walk because I had a massive painful abscess right below my knee.

When I developed costochondritis - severe chest pain, thanks to inflammation of the cartilage in my ribcage - I mostly didn't tell anyone until it had been going on for months. And then I ended up going to a free clinic instead of the ER.

I also tend to ignore toothaches until the pain spreads all over and causes extremely painful headaches as well.

I had a pain in my hip for close to 6 years, that I told no one about ever, until about a year ago, at which point it turned out to be bursitis and was easily resolved.



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14 May 2012, 11:59 am

The thing is, despite having pretty typical Aspie traits (as an adult--as a youngster I had more autie traits), I have more in common with the people they call "LFA" than you might expect on first glance.

I'm just not capable of forming social connections. I just... don't. I like people or don't like them, but I can leave them without missing them. I can stay alone indefinitely without feeling lonely, even though I do feel stir-crazy if I don't leave the apartment. I zone out and ignore the world. I'm unaware of what many people around me think of me. If I get stressed enough, I forget the people around me altogether. I stare at shiny things, flap my hands, rock, flick my fingers.

You wouldn't think that someone with those traits is also a highly verbal gifted college student, but I am. A lot of the stereotypes that come with "Asperger's" don't apply to me. I care a great deal about others' well-being; I'm not anxious in social situations; I'm creative. I'm a visual/conceptual thinker, not word-focused. I don't lash out at others unless someone tries to restrain me during a meltdown.

That's not unusual. Most Aspies don't fit the Aspie stereotype exactly. The trouble is that people often assume we do, because we fit just enough on first glance that that assumption isn't immediately invalidated.

I've been diagnosed Aspie, autistic, and PDD-NOS. Asperger's is the most common judgment, but I don't agree with it. PDD-NOS is really the only valid diagnosis for my case, just like for most of the Spectrum.

When I say "autistic" rather than "Aspie", that is a more general statement. Because I don't fit the stereotype of someone who's a completely unresponsive savant calculating people's birthdates, saying "autistic" forces people to see me as an individual with an individual set of autistic traits.


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VisInsita
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14 May 2012, 1:24 pm

What I have noticed during the time that I’ve spent on this wrong planet behind the sun is that people with Asperger’s gladly seem to associate themselves to autism and many have the need to argue that high functioning autism and Asperger’s don’t really differ in any way at all.

I am not going to state anything to a direction or another, but I kind of understand what Sky Heart means. In some cases high functioning autism really isn’t the same thing as AS is to most of you. It seems that I personally probably have even less problems than most people with Asperger’s here, albeit me being as a child in the “more autistic” side. I can associate my HFA easily to AS and I actually almost have a constant need to reassure that to myself, where as people with AS seem to feel their problems are more comparable with LFA and have an almost opposite need to emphasize how seriously affected they really are. That is of course understandable, since some seem to doubt the existence of AS and it very often is not taken as seriously as it should.

I surely don’t want to underestimate anyone’s problems, but I just want to say, that the way in which e.g. Sky Heart is nonverbal differs a lot from me or somebody else not being able to explain things clearly.



Last edited by VisInsita on 14 May 2012, 3:16 pm, edited 2 times in total.

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14 May 2012, 1:34 pm

VisInsita wrote:
What I have noticed during the time that I’ve spent on this wrong planet behind the sun is that people with Asperger’s gladly seem to associate themselves to autism and many have the need to argue that high functioning autism and Asperger’s don’t really differ in any way at all.

Well that could be because the main 'difference' people bring up is a speech delay in early childhood....many including myself are of the opinion its rather ineffective to base whether someone has AS or HFA based on a single symptom. No disorders are diagnosed by a single symptom so why should autism be? But when the term aspergers is out of the DSM that issue should be solved.

I am not going to state anything to a direction or another, but I kind of understand what Sky Heart means. In some cases high functioning autism really isn’t the same thing as AS is to most of you. It seems that I personally probably have even less problems than most people with Asperger’s here, albeit me being as a child in the “more autistic” side of it all. I can associate my HFA easily to AS and I actually almost have a constant need to reassure that to myself, where as people with AS seem to feel their problems are more comparable with LFA and have an almost opposite need to emphasize how seriously affected they really are. That is of course understandable, since some seem to doubt the existence of AS and it very often is not taken as seriously as it should.

I surely don’t want to underestimate anyone’s problems, but I just want to say, that the way in which e.g. Sky Heart is nonverbal differs a lot from me or somebody else not being able to explain things clearly.


And well sometimes people seem to make claims that indicate people with AS by default have less struggles then people with HFA or LFA...so it can make people defensive(I'm sure I'm guilty of getting defensive over comments like that.) so yeah then there can feel like more of a need to have their struggles acknowledged instead of brushed aside.


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14 May 2012, 1:58 pm

Rhiannon0828 wrote:
I think that it's interesting that so many people here downplay the effects of the social aspect of aspergers. Yes, there are many symptoms that are involved that get less attention, and for some they are the most severe. That is not the case for me. I have a very limited desire for social interaction, even with my family, who I love. As far as other people are concerned, that desire becomes almost non-existant. I interact with other human beings far more often and more readily on this forum than I do in real life, when I have a choice. I have a job, and interaction with others is required of me, and I am able to go through the motions well enough to get by in most cases. But if some people who do not have as much difficulty with social issues think that it is not a real problem when you do, they are mistaken. In many ways, in many contexts, I can pass as "normal". Most of these contexts involve a superficial level of interaction. Easy enough to fake as comfortable. But for anything involving more in-depth interaction, I am clearly different, and it puts people off. There is obviously something "wrong" with me, in the judgement of many people. So no matter how many coping skills I have developed to deal with or mask my difficulties with executive dysfunction, emotional regulation, stims, sensory issues, etc., my social issues are always my downfall. And in case some one was getting ready to suggest it, no, it's not social anxiety. People and social situations do make me anxious. But it's because I don't understand them, they don't understand me, and I have very little desire or ability to rectify that. It causes people to believe many erroneous beliefs about me; that I am arrogant, unfriendly, argumentative, uncooperative, unhappy, uncaring; I am sure there are others. My problems are definitely social, and it goes way beyond "socially awkward nerd".


I experience something similar at work and elsewhere. I'm the quiet, reserved type, and quite some people are very much creeped out by me simply for being so quiet. I don't have the intention to bother anyone with it, I just want to mind my own business, but apparently it's a huge social no-no to say nothing at all when you don't have anything to say. You're expeted to banter about SOMEthing. I don't feel comfortable with that, and as a result, people see me as weird and rude. I've sometimes tried to explain it to them RATIONALLY, but that doesn't often remedy things. It seems that when you can't convey the emotional and social cues that come automatically for 'most normal folk', you're dismissed.


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14 May 2012, 2:04 pm

I am a person who went from severely autistic and non-verbal in childhood to high-functioning and Asperger-like in adulthood.

My progression through the autism spectrum was not an aerial tramway to the top of a mountain, but a rollercoaster ride with many ups and downs at many different spacetimes.

Because I have lived through a big block of the spectrum during my life, I feel that I can relate to many different people on the spectrum. I can relate to people who are non-verbal and cannot communicate their needs and wants, because I remember the same from my childhood and adolescence. I can relate to people who function well and have careers and relationships, because I hope to achieve the same in my life.

Splitting the spectrum into LFA and HFA and AS does not make sense to me, because that is like splitting myself into multiple people.

I am glad that the spectrum will be merged into ASD in the DSM-V. On the outside, my diagnosis will be ASD, and I will have gone from Level 3 in childhood to Level 1 in adulthood. On the inside, I am just me.



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14 May 2012, 2:36 pm

btbnnyr wrote:
I am a person who went from severely autistic and non-verbal in childhood to high-functioning and Asperger-like in adulthood.

My progression through the autism spectrum was not an aerial tramway to the top of a mountain, but a rollercoaster ride with many ups and downs at many different spacetimes.

Because I have lived through a big block of the spectrum during my life, I feel that I can relate to many different people on the spectrum. I can relate to people who are non-verbal and cannot communicate their needs and wants, because I remember the same from my childhood and adolescence. I can relate to people who function well and have careers and relationships, because I hope to achieve the same in my life.

Splitting the spectrum into LFA and HFA and AS does not make sense to me, because that is like splitting myself into multiple people.

I am glad that the spectrum will be merged into ASD in the DSM-V. On the outside, my diagnosis will be ASD, and I will have gone from Level 3 in childhood to Level 1 in adulthood. On the inside, I am just me.


I agree very much. And I think people with AS can also relate to LFA people, because I think it is also about personal differences not just about the severity of your autism. I can relate to a lot of people and most of them don't even have autism and most of them I don't even know personally. :)

To Sweetleaf: Well, why “they” (including me) bring up the speech delay is because people here all the time ask what is the difference. In my opinion there had to be a difference from a diagnostic point of view between autism and AS whether that was/is right or not, since some got the label AS and some autism. The only reason I came up was the speech delay. If the child e.g. at the age of four was still nonverbal and thus also generally developmentally delayed and had clearly autistic behavior, it was/is in my opinion then pretty righteous to diagnose that child with autism. Isn’t it? That was the difference. There was a clear difference in functioning at the age of four, but that doesn’t mean there is difference in functioning at the age of 24.

I apologize, if me “opening up” made somebody feel underestimated or something… I just kind of felt bad, cause all the voices with more severe forms of autism kind of seem to drown here a bit… But it is nice, were all here! :)



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14 May 2012, 4:07 pm

btbnnyr wrote:
Because I have lived through a big block of the spectrum during my life, I feel that I can relate to many different people on the spectrum. I can relate to people who are non-verbal and cannot communicate their needs and wants, because I remember the same from my childhood and adolescence. I can relate to people who function well and have careers and relationships, because I hope to achieve the same in my life.


You deserve it :)



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14 May 2012, 5:22 pm

What VisInsita got me back to thinking that "people with AS" and "people with LFA" can both mean different things. And why I'm in favour of calling AS autism.

In my case, "utmost hf" or "very mild" AS as far as language is concerned means that I am capable of speaking pretty fluently under certain circumstances (coherence aside for a moment), that in everyday life (now that I talk to several people/have remotely normal conversations that I think are perfectly normal and awesome) my speech is broken ranging from semi-fluently with only a few words wrong, sounds wrong, wrong tenses to a sentence with all wrong grammar, wrong words and wrong pronunciation and that I also cannot speak (make the sounds necessary to speak) sometimes.

From what I understand there is also another difference - if one wants to be very exact about language and speech in autistic people - between creating original speech/language and saying the sentences that belong in a certain situations (as in echolalia) and the many levels between those two. Explaining yourself is greatly affected by what your ability in this is and more so, how well you can spontaneously access your ability (for example, answering well (coherent, fluent, to the point, possibly with the correct social address) only several hours after the question was asked can be very useless and problematic).

Meaning, I can say that I am hurt and I'll say it hurts "there" but that's about as far as it goes. I am however not usually incapable of learning how to describe it with assistance so that makes me quite different from someone who cannot describe it even when they're offered similar assistance by being told examples and picking up the ones that fit. These two might look very similar but it makes quite a difference to be able to figure it out with assistance and needing someone else to do most of the figuring out for you because you can't do it.

And different levels of understanding language (in whatever form) and of understanding speech are also playing a huge role in this as does the access to non-verbal signals such as pointing or nodding in response to a question. Difficult to answer to anything you don't comprehend or didn't hear right or both.

Anyway, differences can be huge or not so huge at all which is why some people with supposedly very mild or utmost hf AS can relate to a few or even many symptoms, daily struggles/impairments and experiences of someone with classical autism and/or "LFA" but why some people with classical autism/LFA have far fewer in common with some people with AS.


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14 May 2012, 5:52 pm

all the asperger people here could not go for 1 year with no talking. I think asperger is a type of autism. But people here are fustraiting. Where to all the autistic people go. not here I think.



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14 May 2012, 6:39 pm

Well, the obvious answer is that AS *IS* Autism, even if not exactly the same as HFA, they are pretty darn close. Probably have exact same cause, but maybe a bit of difference in brain activity or neuropathway development.
The Flu analogy works for me, you have Type A & Type B, but they are still the Flu.

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