Making Comparisons - Me to "Extreme" Aspies

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WhiteRaven_214
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14 Aug 2010, 9:17 am

Hello,

I was wondering what the REAL range of severity is for Aspergers. It appears that, despite the problems I experience with AS symptoms, it seems to be nothing compared to what some others face.

Let me tell you a story....


Despite having a terrible time myself - bullies at every level, being forced out of work, few friends, poor social skills, narrow range of communication, co-morbid OCD, no auditory memory, "dreamworlds", blah blah blah - it appears to quite a few people who are familiar with the condition that I only have 'slight' Aspergers, due to the fact that I can still function at a day-to-day level and appear normal around others.

I know of a nice lady who said this to me today. I felt hurt somewhat, because it feels like she's patronizing, like my experience is lame or irrelevant. But I doubt that she means that. She is most likely comparing me to her nephew, who has AS ! !!REAL BAD!! ! - like so bad that he is mentally unable to leave his bedroom, unless special conditions for people and things in and around his house have been met.

So that means that there are others who can't function at a day-to-day level and who are utterly dependent on other people for support.

This situation had made guilty in another angle, due to the fact that I've applied for the Disability Support Pension, because of being unable to properly receive instructions or communicate effectively in a workplace environment. That is why I lost my job. I doubt that I would qualify for the pension (I don't really want to qualify), but it doesn't matter; the purpose of me applying is to open the door for some Vocational Rehabilitation from Centrelink (yes, I live in Australia). If I do qualify, I only want to be on it for a short time, until I am adequately retrained. I detest being on welfare.

In the end, it's humbling to note that there are others out there living with very severe forms of Asperger's, who are far worse off than I will ever be. Maybe that's the reason why I feel hurt by the nice lady's comments - my experience with AS may be lame and irrelevant in the great scheme of things.

... End of story.

Is the range of severity for Aspergers this outrageously large? Are there persons here in the forum like the nice lady's nephew, utterly housebound, unable to deal with the outside world and/or lost in an extreme routine? Is there anyone there who knows of such extreme Aspies?



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14 Aug 2010, 10:58 am

I think the answer to your question is that, yes, the range is that large and, yes, there are people on this forum living housebound.

But that doesn't mean you should feel bad about using services that will give you a hand up, or feel offended that you are thought of as "higher" functioning. Everyone wins when you stay independent and successful. And by doing so, you are living as "higher functioning," even if the reason you got there was from your own determination and hard work. As a parent I applaud everyone who can find their road, however they've done that. It is the goal, isn't it, to find a road no matter how difficult?

Some of our housebound members still have a road, btw. There are many, many ways to contribute to society and / or find self-worth for yourself. We have some pretty wonderful blogs and other internet based contributions coming from some of those members. I don't think they want you to feel sorry for them; they just want people to understand them and maybe offer that occasional hand up when needed.

Everyone goes through life with gifts and burdens. There is no way to put it all on a scale and figure out whose is better, and whose is worse. We all just do the best we can.


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MONKEY
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14 Aug 2010, 11:12 am

Yes, the severity scale is a veeeeeery long one. I am at the very mild end luckily.
I know a few that are what you would call "extreme", my best friend is pretty severe (I don't tell him that though, he thinks he's milder.) And another boy a went to school with is very extreme, but still has friends somehow, although his friends are on the same wavelength as him and have a few problems themselves. I never liked him though, he swore at his mentor all the time and he was a bit of a nob.


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Willard
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14 Aug 2010, 11:22 am

[quote="WhiteRaven_214" so bad that he is mentally unable to leave his bedroom, unless special conditions for people and things in and around his house have been met. [/quote]

This cannot possibly qualify as High Functioning. That's not AS, that's Classic LFA.



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14 Aug 2010, 11:43 am

I'm having the same comparison issue myself.

It's the reason why the doctor I saw yesterday was hesitant to say I had AS, because though I showed most of the traits, it didn't hinder me that much, it was too 'mild'. (it's call adaptation...)



daniel3103
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14 Aug 2010, 11:50 am

DW_a_mom wrote:
Everyone goes through life with gifts and burdens. There is no way to put it all on a scale and figure out whose is better, and whose is worse.


I second this comment.

WhiteRaven - what you're describing is that you're better at functioning independently than some others. But there are other aspects to one's quality of life. Maybe some of the low-fuctioning people you're thinking of are happier than you. So, you're doing better in some respects, and worse in others.

If it's any help, I'll give you an insight into my experience of life. I'm high-functioning and independent, but I live with bad feelings most of the time, e.g. high anxiety, anger, sadness, and I have flashbacks to previous bullying incidents every day throughout the day. It's tempting, when I see someone else in a different situation, to jump to the conclusion that "S/he is doing better than me" (e.g. a high-flyer with a huge income) or "S/he is doing worse" (e.g. someone who has to live in a care home and be looked after). But that would be a superficial judgment. The reality is that we have a different set of experiences of life and it's very difficult to put them on a scale. When I compare myself to someone else, I now think "I have my problems, they have theirs, the problems are different but both sets are very real". When I then meet someone who is apparently in a worse situation than I am, thinking like that stops me from feeling guilty about looking after myself.



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14 Aug 2010, 1:20 pm

I think it is difficult to determine functioning level because there are so many ways it can effect someone at different severities. I have a sibling who is housebound (but HFA), and it is very difficult for me to leave the house, both of us don't go to school. I don't know if I'm mild or severe or whatever though.



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14 Aug 2010, 2:13 pm

There are different ways it can affect people. Some people have more problems in one area (such as sensory integration) and others may have more problems in another (such as executive function).

I think a lot also can depend on environment too - the experiences a person has and on the strategies a person builds. I was a lot more low functioning as a child than I am now because I have taught myself a lot of strategies and put myself in lots of different situations to learn how to adapt and survive. I'm also fortunate to have quite a high IQ so I can analyse situations and learn about psychology and how people's minds work - I can use my intellect to compensate for deficits in social instinct.


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14 Aug 2010, 11:47 pm

Good luck with the DSP. You've already put money into the welfare system through tax when you were working, so I don't see yourself as bludging off the system.

I guess you're really questioning whether you deserve to be on the spectrum?

Aspergers is part of a spectrum disorder, as mentioned already there's a very wide spectrum of people who are impacted, and some people are impacted more than others in specific areas. There's really no point comparing yourself to others because what's most important is how you are impacted and to what extent by what areas.

I'm another who's considered "high functioning" but if you put together my [probable] full diagnosis [the psychiatric + psychologist DX], then on paper I shouldn't really be functioning much. Yet I've worked full-time, studied full-time, held onto some interpersonal relationships, traveled, have a fairly independent life etc. - all albeit with varying degrees of difficulty, but it was still doable. I doubt I would get much support from my treatment team if I tried to apply for DSP because of my level of functioning, but that's life.


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15 Aug 2010, 1:56 pm

Willard wrote:
WhiteRaven_214 wrote:
so bad that he is mentally unable to leave his bedroom, unless special conditions for people and things in and around his house have been met.


This cannot possibly qualify as High Functioning. That's not AS, that's Classic LFA.


I think it can - if he has no mental retardation neither a spech delay, this is Asperger Syndrome.

At least by the description, this seem a extrema case of "apparently inflexible adherence to specific, nonfunctional routines or rituals", who is a symptom of AS



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15 Aug 2010, 2:29 pm

You seem about the same level as me, although I also have physical illness and depression that drags me down too.. I don't really think I'm all that autistic, however it sort of does define me. And it sort of does give me secondary problems that are not nothing... was diagnosed as PD prior.. so. Yea, quite real... Although right now I'm all about how I'm not "ill"... I'm really confused to how to separate Asperger's from mental problems, if it's possible...

Anyway... my issue has been the opposite. All people with Asperger's I'm coming across are so dang well functioning I want to puke. For one they all hold down jobs. They earn money, they drive, they own things.... They say they are no different than normals. They have the same skills the same empathy. And I'm wondering what makes them Asperger's then? And I feel utterly alone with my totally messy home, my poverty, no job, always tired, being on disability.

What I'm saying is that it is a matter of perspective. We identify or other people think we should identify from where other people are. I happen to come across very high functioning people and you heard about this boy. And it sort of makes us reflect on ourselves. Either we might change viewpoint or we feel bad somehow because people compare us.

And it's a sucky situation. Because we're never left to just being us.

Anyway, I'm here on the so called high functioning end with ya!



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15 Aug 2010, 2:49 pm

Willard wrote:
[quote="WhiteRaven_214" so bad that he is mentally unable to leave his bedroom, unless special conditions for people and things in and around his house have been met.


This cannot possibly qualify as High Functioning. That's not AS, that's Classic LFA.[/quote]

Why do people always say things like that? There's nothing about the current definition of AS that says that someone has to be able to leave their room.


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ooOoOoOAnaOoOoOoo
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15 Aug 2010, 2:59 pm

Some are mild, some severe, and then there's me. Smack dab in the middle. I am not that social or interested in relationships, but I can leave the house, drive, shop, buy stuff, talk to people (when I feel motivated which isn't that often).



frag
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15 Aug 2010, 3:00 pm

People say all kinds of things. I was yelled at once for "faking" Asperger's because the girl said she knew about these things and people with Asperger's don't see people as people, they are more seeing people like chairs... I really know people are not chairs (She meant any object I assume) and therefore I cannot have AS. I think once upon a time she was "right" because in the past people like me didn't get diagnosed and those treating others as objects were seen as AS. I don't know where those people end up on the spectrum these days though, if they are still seen as AS or if they are seen as more LFA.



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15 Aug 2010, 3:17 pm

frag wrote:
People say all kinds of things. I was yelled at once for "faking" Asperger's because the girl said she knew about these things and people with Asperger's don't see people as people, they are more seeing people like chairs... I really know people are not chairs (She meant any object I assume) and therefore I cannot have AS. I think once upon a time she was "right" because in the past people like me didn't get diagnosed and those treating others as objects were seen as AS. I don't know where those people end up on the spectrum these days though, if they are still seen as AS or if they are seen as more LFA.

The idea of seeing every person as an object is way too general, anyway. I have known people who treat certain individuals like objects, yet have had the utmost respect, concern, and empathy whenever they felt it necessary. It seems like people, generally, do this. Some people they have respect and concern for, some people they don't. It varies in levels of intensity.



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15 Aug 2010, 3:18 pm

The guy who can't leave his room is a hikikomori, and that's definitely not incompatible with being a high-functioning Aspie.

Is he really lost, though? Part of me wants to quote Lord of the Rings at you, but that would require explanation anyway. Do you know what he gets up to in his room?

Anyway. His quality of life aside, everyone has a different set of skills and challenges. Are you female? Because female Aspies seem better able to "fake it" socially than male Aspies, despite having challenges. I'm in your position, I'd say, especially because I can limit my interactions to the kinds where I'm at only a slight disadvantage, or none at all. But if your hikikomori can get himself to bed on time and get his homework done without prompting, I confess, I would consider trading with him.

(I probably wouldn't do it, though. Not least of all because adjusting to someone else's life would make me crazy. :P )

It's just a good thing knitting isn't considered an essential skill and evaluated in determining your functioning level. 'Cause otherwise, my friend and I would find people's perceptions of us reversed. But for some reason, ability to produce normal-sounding expressive language is more important than knitting (I suppose I can see why; I would certainly consider it so, although given my skill-set I may be biased), so there you go.

Yeah. The range of severity is as broad for autism as it is for neurotypicality. The perceived range is even greater, perhaps.


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