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

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As trite as it may sound, you have to live one day at a time. Rather than giving in to the despair that comes from worrying about what will happen to you for the rest of your life, you have to try to do things today that make you feel better. It may not seem like there is anything worthwhile, but even small steps like engaging in some activity that gives you satisfaction can lift you up a little, just for now. I know it's easier said than done. I know that for me I feel the most despair when I look at my life's prospects, but I only need to get through today.

Nothing bad lasts. There is some way out, around, through, over, or some way to cope or change things. Even if the only way to make things better is just to wait it out, there is a right answer.

Theoretically, there could be a situation without one, but despite believing many times in my life that I've found one, I never have.

Don't try to fix or cope with Asperger's. Look at the specific things that are bugging you. Social isolation. Anything else? Can you find some specific social situations that are particularly bad? This site is here for you to ask for help, like you're doing now. We can't really suggest anything to remedy life sucking, but we can suggest ways to make life suck less in specific ways. You can learn social skills. Yes, you really can, and you can learn to interact with NTs easily. It will be difficult, though.

I suggest seeking friends who are misfits or unpopular.

Listen you can do two things.


-You can be bitter about who you are

-You can embrace it and work with and be happy with it


Do the later

*raises hand*

It's not a gift. It sucks. Big time. Everything the OP says about it is true. I'm in my 40s and it hasn't gotten any better. I have had reasonable intellectual and occupational "success" but interpersonally my life is, was and probably always will be a freaking MESS. All I can do is continue to be as stubborn as I always have been and keep trying because I have three kids who need me and I cannot give up.

~kate

Bwahahaha! Certainly is not a gift to some people.

PistolSlap, it will not get any better when you are in your 40's if you do not make it better, trust me on this. You are going to have learn to adapt yourself to the different social sitiuations. I have always been able to find work arounds or a way to manipulate the situation. I shop at stores with automatic check out so I can avoid cashiers, I do not drive but I have managed to find a doctor office in walking distance, I have made myself start conversations with people in check out lines so I could practise interaction, and I will not hesitate to stand up to people bullying me. If you do not discover the ability to adapt or work around your autism it will bite you in the ass making a bad situation worse. So please try a little harder so you do not end up becoming one of those sad guys posting on The Haven saying they are going to commit suicide they always sound so pathetic and never do themselves in.

Umm... Not to be rude, but you have three kids who "need you"--and are presumably depending on you--which implies that you are capable of being a dependable parent... and you've had "reasonable intellectual and occupational success"... I honestly don't think your life is a "freaking MESS". Okay, so your interpersonal skills suck; but look at all this other stuff you've done. Surely that means you must be good at *something*! Don't make the mistake of thinking that interpersonal relationships are all there is to life; maybe that's true for extroverted, ultra-people-centered people, but there is just a lot more to life than that.

What about those of us WITHOUT a "reasonable intellect and occupational success" PLUS sucky interpersonal skills? I don't care what my IQ tests say, I feel I have every rational reason to believe my intellect is quite "unreasonable". I have felt that way from the time I was seven years old or less. I can't think of one thing i'm really good at and if there is anything i'm good at, it's not something that is of any interest to me or practical utility to boot.

Furthermore.....no one would deny i've had nothing in terms of "occupational success". Unless working at unskilled, minumum-wage jobs which have never allowed total financial independence from my family is now defined as "occupational success". My lack of occupational success is no doubt related to my lack of "reasonable" intellect/cognition/memory.

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.

This was the only autism-related study I could find which would even consider me without an official ASD dx. I tried to get into countless memory disorder research studies too and not one would give me the time of day. Once again...i've never been dx-ed with any memory disorders aside from mild ones in visual memory which are common in NVLD/AS anyway.

That doesn't even matter much since the vast majority of these studies deal with age-related memory disorders like Alzheimer's and other forms of Dementia. Thus.....there's everything out there for people who are about to die anyway and nothing for those of us who likely still have several decades left.

I have told everyone in this group who reads my posts how severe, neurologically-based memory problems can exist while flying underneath the "radar screen" of the standard neuropsych tests of memory. Even the neuropsych who just evaluated me acknowledged this AND he acknowledged that it was entirely possible I could have such problems. Nonetheless....he refused to recommend any further testing to OVR (who ordered this eval and covered the costs of it) even though he admitted it may offer a more comprehensive assessment of my condition. His stated reason for refusing to do so was because further testing "would only serve to reinforce the problem that is facing him".

Reinforce the problem that is facing him!! !???! !!???

I guess I just don't have the right to know what's ultimately wrong with my brain after 40 hellish years of trying to find out. All because some alienist who still doesn't know me from Adam in spite of all the stupid twilight-groping tests entities such as himself administer. The same sort of tests which have my IQ in the genius/very superior range one year and in the average range the next. The same sort of tests which yielded a dx of borderline personality disorder (which was a patently ridiculous dx in my case) on one evaluation and schizotypal on the next. 2nd The same sort of tests which dx-ed me with schizotypal pd even though I insisted I fit the DSM-IV's schizoid criteria better. I was finally dx-ed with schizoid by the same neuropsychologist who just evaluated me, so at least he got something right 3rd These idiots have been proven wrong everytime they refuse to accept my own consistently accurate self-dxes.

So yeah....I guess I don't have the right to virtually anything at all because i'm poor and can't afford any meaningful diagnosis/treatment on my own. The funny thing is alot of other poor people WITHOUT any significant mental or physical issues have the right to quite alot. Non-disabled poor people can irresponsibly pop out seven or more kids in this country and the government will take care of the whole lot of them. I'm fine with that, but how about a little consideration for people with real physical problems? Brain disorders ARE physical problems of course. Instead...I get to be told what's good for me and what quality/quanity of diagnosis and care i'm entitled to. Paris Hilton and the poor irresponsible breeders all over the country get told no such thing. Unlike me....Hilton has never known a genuine hardship in her preposterous life and has never known a hard day's work either.


And people wonder why i'm so misanthropic, angry and "serious" all the time??? This society could blow up tomorrow and I wouldn't lose one nanosecond of sleep over it.



I can't afford any further neuropsych/neurological testing and/or neuroimaging on my own and neither OVR nor my insurance will cover the costs of any. Therefore.....i'm out of options at present in terms of gaining any further insight into my brain and it's discontents.

All this considered.....at what point is it legitimate to believe a neurological/neuropsychological disorder is a curse irrespective of whether it's "merely" AS/NVLD i'm dealing with or a missing hemisphere??? Does satan himself need to be poking me in the rear with his pitchfork before i'm allowed to view this brain I was born with as a hellish curse???

Horus--

I'm feeling your frustration. I have no words adequate to the situation.

Sounds like you've tried everything. Have you ever approached the infamous Oliver Sacks? I know from reading his books that he's seen and served some very mysterious brains. Why not give him a shout out?

http://www.oliversacks.com/

I'm sorry you can't get answers!

I also have tremendous difficulty expressing the situation and explaining the memory problems I believe I have. The latter is a big part of my frustration. I've been relying on the professionals to tell me something about these problems. Thus far....they haven't even been able to objectively confirm that I have any memory problems aside from the aforementioned ones with visual memory which are common to many with AS/NVLD.

That's not to say they don't believe it's impossible for me to have the sort of memory problems I believe I have. Like I said....the neuropsychologist who just evaluated me told it's entirely possible for an individual to have significant memory impairments which elude detection on the standard neuropsych tests of memory. This is something I already knew long before seeing this neuropsychologist, all he offered me was personal and professional confirmation of my belief here.

Still.....the man refused to recommend any further evaluation which may actually be able to determine the existence, origin and nature of the memory problems I believe I have. Again....OVR ordered the evaluation I had with this neuropsych and they covered the costs of it. I currently cannot afford any further evaluation and I don't know when, or even if, I ever will be able to do so. My insurance certainly won't cover any further evaluations either. If the neuropsych would've recommend more extensive evaluation to OVR, they likely would cover the costs of it.

Thus....the neuropsychologists haven't been able to tell me anything beyond what I already know and what I already suspect.

I have not tried to contact Dr. Sacks before, but I actually have considered contacting him. I just never thought he would respond to me. Do you really think there's a good chance he might get back to me? Either way...it can't hurt to try now that you mention it. When I thought of contacting him before, I just dismissed this as an absurd idea and one which would be a total waste of time. Nonetheless....i've exhausted all my other current option in terms of identifying the existence, origin/s and nature of the memory problems I believe I have. I will contact him ASAP and just hope for the best while expecting the worst.

Thank you very much for reaffirming the viability of this idea and i'll let you know if I hear anything from him.

Last edited by Horus on 30 Sep 2010, 8:08 pm, edited 1 time in total.

I know your intentions are good, and not to be rude. However, it is equally in error to think that one can be happy on the basis of achievements alone as it is to think that interpersonal relationships are all there is to life. I'm not anywhere near extroverted, and not extremely people-centered either, but it has taken the joy out of life for me to lose one relationship after another and not ever be able to understand why. I don't make more than superficial connections with other people frequently and when they invariably sever those connections it is horrible for me, especially since I can't figure out for the life of me what happened to screw things up and people generally don't like to explain. It is frustrating beyond belief because when it comes to facts, logic, etc, I am more than smart enough, but when it comes to this stuff I am an *idiot*. I'm not a bad person, I'm not a rude person, I don't do awful things, but this crap always happens, and no amount of being good at other things makes up for it. I don't need *a lot* of social contact, but I'd be happy to have one or two people who stick by me.

~Kate

Wow, lots of great discourse! More than I expected. On a humorous aside, consider the following:
1. 'Discourse' means "communication of thought by words; talk; conversation".
2. 'Course' is the nature of the route taken, in this case an intellectual route.
3. Consider the prefix of dis- means " “apart,” “asunder,” “away,” “utterly,” or having a privative, negative, or reversing force".
4. So, if we're pursuing an intellectual course together, then 'discourse' would surely imply we are all heading in opposite directions of that same point, none of us speaking of the same thing whatsoever.
5. What is the prefix for something done between multiple entities or together, mutually, or reciprocally? "Inter-". Interrelated, international, interdependent, etc.
6. So, it might be more accurate to state that we're all engaging in very stimulating intercourse on this forum!!

But seriously now, I appreciate the input and points of view offered to my post, and also the various tangents trailing from them. Unfortunately it seems that the general consensus is 'it sucks, it's hell, it's f*cked up my life, I am 40 years old and unfulfilled and lonely.' Terrible! It's worse than I thought -- or more realistically, it's exactly as I thought.

I suppose there is merit in what some of you have said about achieving a happy life, working within the parameters of our limitations.
...I suppose... I suppose I just never wanted to be satisfied with a 'mediocre but happy' life. "What makes life fun for you?" 'Oh, well, once a month, after my janitorial job, I go to Denny's and hang out with a bunch of people who can't effectively assimilate with the population, so we huddle together like white folks in LA.'

I know I'm being self-deprecating and insulting to the those with disorder in general, but damnit, I have hopes and dreams, and they involve a career and friends and a family -- the definitive quality throughout those three being the ability to understand the world and people in a flowing, non-linear sense -- the ability to instantaneously be able to decode the minor and subtle languages that integrate people with one another effectively.
My hopes and dreams don't involve constant bewilderment in the simplest of situations, fumbling and guessing at the appropriate things to say in any situation, when to laugh and for how long, whether or not someone likes me or any interpretation in general about what is going on in their head. My hopes and dreams are directly contrary to the knowledge that as soon as I open my mouth, everyone around me will begin to treat me like a child and condescend to me as a by product of their conscious or unconscious recognition of the complete disconnection between the stimulus of the situation and my contrived response.
I'm a goddamned adult, and I'm sick and tired of feeling like a child because I'm too socially stupid and naive to understand the situation and interact on an equal level with people my age. I have great qualities that make me a wonderful person -- I'm smart and compassionate and loving, but unfortunately the corrupted connection between myself and the general population compromises all of these things by destroying the medium of effective interpersonal communication and mature common-sensical understanding of dynamic, illogical, organic, non-linear events.
I'd be a great computer, but I'm proving to be a very ineffective person. My personality has withdrawn to such a degree that I have almost no interests or personality alone, other than finding some way to immerse myself in another environment like books or computer games; all my personality and life experiences are derived from either being around the few people I can connect with (and mirror their personalities) or by being invisible and vicariously witnessing all of this fabulous neural network of social communication -- as long as I am not in the middle of it.

I've become bitter, vicarious, heartbroken, lonely, and somehow I can't find it within myself to accept this ridiculous existence as 'life' and 'that's just how it is', and 'make the best of it.' I know that these are all valid points, but goddamnit, I'd prefer to be fully autistic and not even be aware of everything I'm missing out on, than watch it all happen around me as I become a non-person, a physical manifestation of nothingness, watching relationships crumble and friends 'move on', and resigning myself to a limited, mediocre existence.

The difficulty with this perspective is that even though I can't conceptually resign myself to this ridiculously limited existence, it's not something like unemployment, where I can decide to get off my ass and all of a sudden restore all the missing connections in my brain and 'get over it' and be normal. The best 'learning' of social skills that's possible isn't real learning -- it's improved guessing. It's having a file cabinet of similar situations to reference to, not organically developing a dynamic, adaptable capability. Yes, overall, I do feel so cheated and mocked by my own witnessing of normalcy, yet my inability to participate effectively, adapt, or even emulate it.

However, it is true that 'it's the way it is' and I can continue to be a victim or I can somehow learn to love my ridiculous self... since I can't seem to be able to change this.
I guess...
*shakes head, frustrated*
sigh
It overwhelms me to think on.


...Well, I'm ranting again. Anyway... all I initially meant to say is that I appreciate everyone's input.

Lol...

If I can add my two cents to this ...

I have 2 boys: the first was diagnosed with AS a year ago at age 6. The second, age 4, was diagnosed with PDD-NOS yesterday.

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.

I worry about what is going to happen to these guys when they get older, and I am dismayed when I see posts like this one.

I'll tell you what is much worse than having AS, it's having two children on the spectrum. I would take both those disorders upon myself in a heartbeat if it meant they didn't have to deal with it.

But I am going to soldier on, and so will you. Giving up is not an option.

I know what it's like to hate having AS, PistolSlap. I feel like I'm missing out on so much of life. I'm hardly ever really happy, I don't have any real friends to speak of, I've never had any sort of a romantic relationship, and I've had barely any life experiences due to the fact that that would require venturing out of the house, which is something that has always been quite difficult for me.

I even feel like my education was compromised by my having AS, since I transferred to a private school for special-education students in the 10th grade (due to the fact that the teachers at my public high school knew nothing about AS), and I literally learned nothing during my years at that school (I stayed there until I graduated). The teachers there were so overwhelmed by having to constantly discipline the ADD/ADHD students that they didn't have any time or energy at all to deal with the less rambunctious students, like me. I spent many days doing nothing but surfing the internet while I was in my classes. The teachers at this school just plain didn't care about actually teaching us students, and I had to suffer for it. If I didn't have AS, I wouldn't have had to go to that school, and I would be a lot more educated now. Plus, I probably wouldn't have had nearly as hard of a time in college as I did if I didn't have AS. I failed out of my first year of college (due to the fact that I got so overwhelmed by the amount of homework, papers, and projects I had and the fact that I was often too anxious to actually go to my classes), and I then chose to attend community college (which, I later found out, has little-to-no actual educational value), and after I graduated with my Associate's Degree, I chose to go to a crappy state school where my professors cared just as little about our education as my private high school teachers did. I just feel so dumb, and feeling dumb + having zero social skills = little-to-no confidence.

I basically feel like my AS is hindering me in just about every area of life, and I don't see how my life could be worth living at all if this is all I have to look forward to: just more social awkwardness, more self-hatred and depression, and more anxiety and loneliness. I don't know how to make my AS work for me at all, and I can't see anything positive about it.

Silas wrote:

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.

ditto what Silas posted------keep pushing through. You never know what will be around the corner for you.

Silas' post inspired me to post this excellent excerpt from an article about school bullying/violence by Robert Ringer. Ringer is a die-hard libertarian and I don't agree with most of his views on political/economic issues. Nonetheless....I think he's spot on here and it's nice to see that one NT non-professional (psychologist, special ed teacher, etc...) is aware of what people with AS, NVLD and other neuropsychological differences often endure in American public schools.

The excerpt is from Ringer's "Cho-factor series" and the title of the article was inspired by Cho Seung Hui....the young man who shot and killed dozens of his fellow students at Virginia tech.


I will provide the link to Ringer's website so anyone who wants to read other parts of the article can do so. The whole thing is well-worth reading IMO:


"Prime Targets
The School Bully



By Robert Ringer

Every school bully leaves a victim. Question: Is it really the bullied kid's responsibility to suffer quietly? Was that the obligation of the seventh-grade victim described below?



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I was in the 7th grade in a public high school. We are in gym class, and several 7th grade classes take gym together. We finish our gym class and are told to take a shower before the next class. I'm one of the smallest guys in the class, but this day I wouldn't become the victim, because they choose someone else. Several guys grab this other person, about my size, and place him in the wire cage they keep sports equipment in. He is naked, of course, heading to take his shower. They then proceed to urinate on him in front of the rest of the guys. You don't even want to know about the laughter. I can't even imagine the emotional scars that he deals with today. I consider myself lucky that day, but that poor bastard … if I ever heard he picked up a gun and killed those S.O.B.s, I would cheer him on. - E.A.
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It's hard to imagine that the incident E.A. describes didn't forever damage the victim's self-esteem and self-confidence. Perhaps he died at a young age ... or maybe he's just lived a life of misery all these years.


Of course, he might have been one of those kids who had the tools to rise above such humiliation, find a way to repair his bruised and battered ego, and go on to lead a successful, happy adult life. Unlikely … but possible, I guess.

Frankly, however, I'm not interested in whether or not he had the inner strength to get beyond such a sadistic bullying incident. Regardless of his coping "tools," I believe all the school bullies who participated in that savage attack not only should have been expelled from school, but should have had criminal charges filed against them. Instead, they almost certainly continued on their merry way as part of the "in crowd" throughout their school years - and, to this day, probably still laugh about the incident.

Now, here's the "X" factor that people are missing when they say it's the duty of a bullied kid to tough it out and succeed in spite of all the taunting, teasing, and degradation he experiences: What if the victim simply is not equipped to handle the abuse dished out by the student criminals who target him?

What if the child has a condition that makes it all but impossible to fend for himself? What if he has Asperger's Syndrome (mild autism) or a "nonverbal learning disorder" (NLD)? Or what if he simply has severe emotional problems, as a result of genetics, an abusive home environment, or any one of a number of other causes?

Now hear this: These kids are the prime targets of the student goons (and malevolent teachers) who thrive on subjecting others to pain. Yet, in my considerable experience, no one - including, and especially, so-called educators - seems to give such handicaps a thought.

But the parents of millions of such children - repeat, millions - see the deteriorating results each and every day when their children come home from the torture chamber euphemistically referred to as "school" … depressed, angry, withdrawn, and worse. It is a very sad, very frustrating, and very ugly way of life.

In a perfect world, every child who is bullied would have what it takes to rise above the physical and verbal abuse, humiliation, and loneliness to which they are subjected. But, as one reader put it:



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I often see this attitude of, 'Well, I did it … why can't others?' However, we're not all created the same, and the circumstances of our lives are not the same. I admire people who do overcome difficult obstacles, but often what's missing is a lack of compassion or empathy for those who can't. - K.A.
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The coup de grace is that if the bullied child ever gets up the nerve to tell on his tormentor, two things are almost sure to happen.

First, the teacher or administrator handling the matter puts the bully on an even footing with his victim. The attitude is: "Now, boys, how can we work this out?" Which, of course, is preposterous and only emboldens the school bully. In every case of bullying in the history of Planet Earth, everyone knows who the bully is and who the victim is. It's never a matter of two relatively equal kids needing to "work out their differences."

The second thing that happens is that the bullied child will immediately be labeled a "snitch" - and snitching, in all schools, is taboo. There is an unwritten rule that you don't snitch - no matter what someone does to you. If you get urinated on, so be it. But telling on the urinators makes you a scoundrel.

The implication is that it is your moral obligation to keep quiet about it when someone batters and humiliates you. If you snitch, there is no turning back. It makes you a permanent outcast with virtually the entire student body - even though you are the victim.

Unfortunately, school officials are too stupid, lazy, and apathetic to do anything about the nonstop sadistic bullying of students who, for one reason or another, are not equipped to defend themselves - and, in many cases, not equipped to get their lives on track as they grow into adulthood. Little do they realize that they may be helping to create the next Cho, and that he may be paying them a visit in the near future to set some things straight that he's pretty angry about.

Hopeless situation? Yes, it is - if schools are allowed to continue with business as usual. Drastic situations call for drastic solutions. In Installment VIII, I'll offer some extreme measures that I think need to be taken if schools are to lessen their chances of producing more Chos - and, even more important, producing more millions of scarred children who are left to quietly suffer.


http://www.robertringer.com/bullying.html