Cheated by Asperger's -- Not worth living with!

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Snowy Owl
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01 Oct 2010, 8:14 pm

This is certainly the place to vent; good luck to you.

I found it interesting starting to read books such as Temple Grandin's Unwritten Rules of Social Relationships- though I haven't finished it-- because it's written from someone on the inside, talking to us, on 'oh, ok, I get it; we all know what this is like!' type of situations- not an NT preaching about things unpleasant or impossible to achieve. If nothing else, reading books by aspie authors etc. (which I've started ordering) might stave off some
of your grumbling misery-- and I'm saying this with sympathizing, not scolding you, because I know the same kind of thoughts you think. At least,
having learned enough scripts to get through first level pleasantries with the
clerk at the store or the person walking by on the beach, gives me a little tiny
respite of enough hit points recharged that I can feel just above the line of this-life-is-intolerable lonely, though not fully wow-life-is-great-I-have-a-spouse-and-kids-and-friends-and-fulfilling-career-and-can-always-connect-socially level.

OK, enough preaching. Good luck to you.

Will look forward to hearing your future posts.



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01 Oct 2010, 8:23 pm

Every day, the more I learn, I am more thankful to my parents for sending me to private school. (They had to work two jobs each besides my scholarship, but clearly I would have been eaten alive in public school...)



MommaM
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01 Oct 2010, 9:50 pm

I read your post and wanted to just share this link about this guy, Nick Vujicic, who is such an inspiration. http://www.youtube.com/watch?v=ciYk-UwqFKA

We have a 16 yr old with autism, so I was kind of sad to read your post and wondered if our son will feel like you even more as he gets older. He struggles with some of the same issues. I hope you'll watch this video and it will give a new perspective.

Glad to see so many have given you some different perspective here...



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01 Oct 2010, 10:02 pm

I don't feel cheated or short changed.


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Horus
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01 Oct 2010, 10:29 pm

Considering the whirlpool of misery expressed in this thread (much of it expressed by myself) and on WP in general, I can't understand why anyone
wouldn't want to see Asperger's/NLD and all ASD's gone from the gene pool.


I think it's a myth that the world has been dependent on people with AS/ASD for technological/scientific advancements. It seems to me that the vast majority of scientists, past and present, have been NT's.

Would the world REALLY be worse off without people with AS/ASD's?


Wouldn't a huge number of people with AS/ASD's be better off without the world?



Horus
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01 Oct 2010, 10:43 pm

As i've stated countless times before, the AS/NVLD/ASD-related social deficits most of us seem to share are an absolute, untrammeled joy to me compared with the learning/memory difficulties I have.

Or that I certainly believe I have.


Apparently...the social deficits are the source of most of AS/NVLD/ASD-related misery for most of you.

While I don't know if these learning/memory problems of mine are in anyway related to whatever caused (white matter abnormalities...whatever) my AS/NVLD, there's probably a chance that they are.

I've encountered many other people with AS/NVLD who also seem to have weird and severe learning/cognitive/memory problems.

NLD, at least, IS considering a learning disability. Still....I believe I have learning and memory problems which are not usually associated with the NLD/NVLD syndrome.



techstepgenr8tion
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01 Oct 2010, 11:03 pm

PistolSlap wrote:
This is ruining my life, one situation at a time. It doesn't help that I'm completely aware of it as it's happening, can vicariously see exactly how it's all 'supposed to work' yet not form those connections in my own situations. It's turned my life into a bitter mockery. A social quadriplegic, so to speak, watching people walk by and not being able to participate in something everyone else seems to take for granted, so subtle and simple.


I can identify wholeheartedly with watching it, completely understanding what I'm supposed to be, how I'm supposed to think - and being in a state of absolute horror as I watch myself mostly do the opposite. Through my early and mid 20's my strategy was this - beat the piss out of myself and be my own worst bully, ie. fear myself 10x more than anyone else over every little slip-up. I really believed at a certain point that my battle to beat this was life and death of honor, that I technically had no right to live - by my own accord (though being bullied by all sorts in my life certainly helped) - if I couldn't fix it. So many years later, its not fixed. You'll find there are certain things you can improve, certain things it won't matter how much know-how you build, how much understanding, or how superhuman of an effort you're willing to put forward.

The issue is really one of chemistry - you can make certain short term victories past the genetic threshold of what you're nervous system will allow, what will run you ragged is trying to maintain ground outside that threshold; it'll be extra energy spent that never gets easier and you'll physically make yourself ill or start overtaxing your adrenal glands before you have to let it collapse back for your own health.

My best advice, in dealing with the pain of it is this: understand that you're surrounded by a world of NT's where many of them can't keep close friends, many of them are chronically unemployed, enough are in jail, enough people - completely without AS - can't do anything right to save their life (socially maybe but that's all they have), its pretty safe to say that they can help being screwed up about as much as we can so, if anything we just have a different sense of understanding of what it's like for the rest of the world. Life on this planet just happens to be that far from ideal for everyone.

Other than that - just stick to your goals and never give them up. To keep the depression off your back and to keep your dignity you'll have to do a lot of goal setting and be very good at piecing apart you're condition to understand what is or isn't your fault and figure out how to accept a life that, yes - can be circumstantially bettered through education and goal attainment - but the fundamental things that are driving you crazy in this post, you'll get a little craftier with your damage control techniques but no, these issues generally won't go away.



techstepgenr8tion
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01 Oct 2010, 11:20 pm

Horus wrote:
Whatever is ultimately wrong with my brain....it has robbed me of everything which was of the SLIGHTEST importance to me except for my crude biological needs themselves. What's worse is I can't even get any ultimate answers to the mysteries of my brain no matter how hard I try. I'm such an "outlier" that no research study will touch me. I was just rejected by the autism research study at Pitt which I tried like the devil to participate in. I was rejected all because i'm too "high-functioning" according to my performance on the stupid, abitrary, subjective and circumstantial "gold standard" of autism diagnosis and assessment known as the ADOS.

Ugggh, I'm UFO as well. Dx'd PDD-NOS when I was younger, most people now would swear that they can't see a trace of it at all - that I must have just 'outgrown' it. ROFL, do they ever get tired of saying one thing, reading another, and continuing to say stupid things like that? I do remember scoring well within NT range on most of the aspie tests as well - what I notice is that a lot of outliers perhaps aren't quite AS but rather just have a lighter manifestation of full blown autism where the majority of it is much more like a physical disability rather than a lack of understanding. I've met other aspies who are like myself - they're rare and of course know the feeling all too well of being double excluded; ie. not quite NT, not quite AS, feeling quite alone in the world.



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01 Oct 2010, 11:31 pm

I currently feel very similar. I was watching a tv show tonight and I was jealous over fictional characters who are capablee of having non-family members who care they exist. Last Wednesday I blurted out to my group (for a class project) that I have Asperger's. My mom got me in contact with someone she knows to try to be friends but for an aspie a simple thing like texting is utterly confusing. Sometimes I wish I could be an aspie who didn't care about having friends.

I was fired by target, like who gets fired from a minimum-wage job when they always came on time? Autism isn't a gift for me. I don't have any great skills, being an aspie who's not into math/computers really shrinks your job opportunities. So you aren't the only one struggling to get by.



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01 Oct 2010, 11:32 pm

The majority of every field is NT; most people are NT.

But look at what we're mentioning as being so bad. We're talking about being abused by other people and the aftereffects thereof. Rather than die out, maybe we should seek to make the society more tolerant, to change the cultural attitudes that lead to incidents such as those described.

Then, meh, we haven't really got issues. It's a simple matter of aug-coms and a bit of research into the medical implications.


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techstepgenr8tion
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01 Oct 2010, 11:58 pm

Horus wrote:
Considering the whirlpool of misery expressed in this thread (much of it expressed by myself) and on WP in general, I can't understand why anyone
wouldn't want to see Asperger's/NLD and all ASD's gone from the gene pool.

I agree with the first part of that at least, however one thing I'd add - from the sound of how much you know on the topic I think you understand what its all about; ie. pettiness, hazing, supremacy of those with certain skillsets vs. those who don't have them - its what people call social Darwinism, without natural predators the wild would be us and its a matter of who's a strong enough specimen of man or woman to survive other men or women if things got 'real' in the worst ways. If we hit an Ice Age and lost all technology though there are a lot of people who'd be utterly useless. Most diabetics would die rather quickly, there are a host of others who need medication to go on.

Its not to degrade others so much as to point out that intolerance in our society is a thing of our genes, its natural selection/natural eugenics and our reptile urges to act in ways that enforce health of the species; the irony is that we are a really big red herring. Regardless of how the term 'nerd' or 'geek' has been spit at me with quite honest vitriol, its ironic how geeks can still out-achieve, learn how to fight well enough that someone who wanted to bully them would have no prayer of surviving what would happen if they wanted to take it physical - ie. inferiority in that case is perceived but not real. I think that's why we need to stand up for our rights though, not at all suggesting that the world should bend over backward for us but definitely that we need to assert what it is we have to bring to the table and call bullsh-- if and where we feel we're being dominated out of the picture for not vibing up the same way the next person does.

On another note though - we're still in pioneering times. A couple generations from now when this is worked out better, people will not go through what we did. Your school experiences - my own weren't too far from that. At the same time, looking back across human history, it's been utterly vile for hundreds of thousands of years, with perhaps some subtle improvements over the last ten thousand, a little more over the last thousand, most notable improvements in perhaps the last one hundred and fifty. You can only imagine how many lives went to waste and how many dreams were utterly destroyed in the last one hundred thousand years before today, that there's still a great deal of suffering, misunderstanding, and lives utterly laid to waste because of misunderstanding - its what our world is all about, comparatively its quite thankful that we aren't being burned at stakes, fed to wolves, or just mysteriously disappearing. I can't remember what country it was, they had folklore where they believed that the elves/fairies would take their child and leave a 'changling' in place of it - ie. something not human - think of any developmental issue that could show up and a child losing its 'humanity' as protection... we've seen some dark days for certain.



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02 Oct 2010, 12:50 am

DandelionFireworks wrote:
The majority of every field is NT; most people are NT.

But look at what we're mentioning as being so bad. We're talking about being abused by other people and the aftereffects thereof. Rather than die out, maybe we should seek to make the society more tolerant, to change the cultural attitudes that lead to incidents such as those described.

Then, meh, we haven't really got issues. It's a simple matter of aug-coms and a bit of research into the medical implications.


Indeed you are quite correct my good Dandelion. Nonetheless as usual, i'm the ultimate outlier...the pariah of all infinity...the desolate one whom even Satan himself doesn't envy.

Therefore...all this is wholly non-applicable to me. If you haven't understood why by now....I don't know what else I could do to explain it all any better.

Utopianize society/cultural attitudes as much as you wish....my learning/memory problems will still be there.

Said problems are the source of EVERY fiber of misery i've known in my life.

The bullying, abuse, social deficits, lack of friends, lack of romantic/sexual relationship and all the other AS/NLD-related social issues have been a thing of sublime beauty, splendor and divinity to me. They have been the summun bonum.

COMPARED to the learning/memory difficulties and all their manifestations which have robbed me of every single hope, dream, ambition, goal, desired talent, desired experience, desired knowledge, etc.....i've ever had.

You have no solution for me and it would seem like no one else does either. I think that's maybe one reason why a limited number of people even respond to my posts.

There is nothing they can say or offer me.


To paraphrase some lyrics from NIN's "Hurt", idealize your society and you will all be someone/somewhere else....I will still be right here.

You will all be having a grand ole' time in your utopian, peace n' love society while i'll still be rotting in the gutter.

Unless of course....your utopian society involves a cure for the learning/memory problems I have.



End of story.



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02 Oct 2010, 1:20 am

CockneyRebel wrote:
I don't feel cheated or short changed.

Neither do I. Sure, there's things I'd like to have, like a relationship for instance, but overall things aren't that bad, and I like me the way I am.



PistolSlap
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02 Oct 2010, 2:28 am

Horus wrote:
Silas wrote:


Quote:
I am in the US, so insurance doesn't cover much of anything, treatment options are few and far between, and there is no way in hell the kids are setting foot in one of our lovely government schools.



No..... insurance doesn't cover much of anything in terms of mental health. I've had various plans over the years and i've never used them for any of the mental health treatment, neuropsych testing, etc....i've had. Fortunately....i've been able to obtain services from OVR who has covered much of my psychiatric care, neuropsych testing, etc....My family has covered much of it too and while they're not multi-milllionaires, they have enough money to cover some of my mental health treatment out-of-pocket.

As for not wanting your kids to set foot in our lovely government schools....I would BEG you not to if at all possible.


The horrific experiences I had from K-12 are so extensive, I could never mention them all in detail.

So...I will mention just a few even though I have no way of knowing whether you kids would be subjected to similar treatment or not:


-I was verbally abused, harassed and threatened on a daily basis for twelve years. Sometimes certain teachers and other staff even participated in this abuse.

-I was spat upon

-I was hit with rocks and countless other objects

-I was shot with BB guns and had "real" loaded guns pointed at me a few times

-I had knives pulled out on me

-I was threatened with rape

-A few kids made bomb threats to my residence

-I once was thrown into the trunk of a car and driven around town for about 45 minutes

-I was robbed and extorted several times

etc.....ad nauseum


The schools I went to were all made up of suburban middle-class-wealthy students and they were mostly white. IOW...I wasn't a racial minority in any of them and it wasn't like I was attending some school in the South Bronx or something. Many people with AS/NVLD have similar experiences. Aside from the lackluster education available at many of our public school, the sadistic NT students and staff should be enough of a reason to keep your kids out of the public school system by any means necessary.


Oh yes, public school is was the reason for many psychological complexes. In 8th grade, a boy convinced me I was gay by calling me gay every time he saw me, over and over again, multiple times a day for a year. I figured if it was so obvious I must be gay. That was a confusing and very miserable time that ground my self esteem into the ground. I've since discovered I'm not gay, but my self esteem is still s**t. Public school sucks, but I'd advise you to get your kids socializing in some way with others, lest they become even more autistic.
At least my social experience has allowed me to learn *some* social skills, and if I had stayed home alone for all that time I am sure I would be much more disconnected. It's a tossup though, considering that I had a better chance of getting the sh*t kicked out of me by my parents than I did by my classmates. Yay AS!



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02 Oct 2010, 2:55 am

Availability Bias, hello. However, some of the things you've said are very reminiscent of what I thought during a time when I was definitely not thinking totally straight. Though, of course, had anyone said something like this to me then, I would've said it was different, it wasn't like that; they might've been wrong but I was obviously right. :roll:

I'm not familiar enough with your situation to be certain precisely what, but there are definitely things that can be done. If we could devote toward finding solutions the energy that currently is devoted to arguing about whether or not we deserve to live, there would be more to say.

And don't forget that these kinds of things can exacerbate the underlying problem, as well.


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Aspiezone
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02 Oct 2010, 3:20 am

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