Labeled disabled and putting my foot down

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I only read your original post and have now had a chance to read the rest of the thread, so I have more to add.

I know that case workers can start to let the power that they hold go to their heads. Not all of them are that way, mind you. Some are also simply ignorant of the people they are dealing with. Their knowledge is about the programs they have to offer, but they are not trained psychologists or doctors, and so they will defend what little cursory knowledge they have with the assumption that they know you better than you or your doctors. If you have one that's reached that point and acts that way, hold your ground firmly but not meanly. If that goes nowhere see what options you have at dealing with a different case worker, but give it a try at first. You might be able to get around her defensive tactics and help her grow as a case worker so that she has a better understanding of the person (you) she is dealing with.

No I don't have a case worker nor do I really feel that I need one. She and I just go to temple together and I know her through a program at an Autism center because her son has Asperger's Syndrome. I had one once upon a time when I was 21 and although I would have needed one to navigate the waters at that time, he was not a good fit. He only met me one other time and assumed that I needed to stock and clean at a job for the rest of my life. I looked at him and said, "It's not the point of my knowing you, it's seeing your behavior." I looked at him and said that I did not appreciate that and did what I could to avoid him in the near future.

He also was rather dishonest or mislead me on a lot of different programs that were available. When I went to check into them on my own, I found that everything he said was wrong.

Well, I don't mean it to sound quite that way. I'm bitter and angry-- I haven't made it to acceptance yet, and sometimes it shows. That was an extremely harsh presentation, and I will gladly apologize for that. I'm sorry for hurting your feelings, sincerely, or for making you feel that life's not worth it or whatever-- that was not my intent.

But. Read this-- all of it-- and think about what I have to say. It's not nice, but it is real, and it's said because I care. I want you to be in a better place in 15 years' time than I'm in right now.

I'm quite blessed high-functioning-- high-functioning enough to pick the right answers to evade diagnosis if I'd been interested in that rather than in finding out if what I suspected was right or not. High-functioning enough that the only thing that discourages me from flying just like "them" is the fact that, no matter how sweet or nice or careful-- or for that matter, silent, if I can manage nothing else-- I am, to quote one relative, "[I'm] not bad or anything, [I'm] nice enough I guess, but [I'm] kinda weird, and people just don't like [me]."

On a strictly practical, objective level, what-- if anything-- prevents me from functioning exactly as well as (or in some cases better than) NTs do is a slight lack of executive function (particularly time management), and a moderately low threshold for anxiety-- which a low dose of Prozac very nearly erases.

Both executive function and stress management can be taught. With relative ease. They are taught to NTs-- many of them less motivated and willing to learn-- than myself.

Finding someone to teach it, now-- that's a horse of a different color.

Which leads me to the other problem. The real thing that stands in the way of me, say, having lots of relationships and a professional career (about the only things NTs do that I don't) is a lack of tolerance. Of someone who speaks slowly because she's thinking about her words, answers slowly because she's thinking about yours. Has to say it a few different ways before she gets the point across. Can look you in the eyes if necessary, but has a hard time maintaining appropriate eye contact (forgets to look, look away, look, look away on about a 3-second rotation, thus either staring off, or just plain staring) while thinking deeply, quickly, or effortfully. Occasionally laughs too loud, takes too long to get jokes, sticks her foot in her mouth by telling inopportune truths, talks too long at a turn-- or speaks relatively little.

Minor things in the universe of autism. In the universe of autism, these are ancillary concerns. If autism were a sundae, they'd be the sprinkles or the cherry on top.

In the universe of modern first-world neurotypical-- the universe within which the universe of autism must exist if we want to be considered "abled"-- they are significantly less minor.

It would be nice if I could just say, "I have AS and this is why I act this way. I'm weighing my words, not thinking up a good lie. Please just be a little patient-- nobody's perfect." Like someone says, "I have dyslexia; I'll be happy to read it, but it's going to take me a while. Could you please print it double-spaced next time? It really helps."

I can't. You don't need me to tell you why. It's like their ears seal shut as soon as the words "Asperger's syndrome" leave my mouth.

The best I can hope for, it seems, is to keep low and buy tolerance by letting everyone and their mother use me for a boot scraper without complaint, protest, or pushback-- and preferably with a smile on my face. I can do that-- have done it for years, hence I've gotten as far as I have in life-- but it wears me down and I really wish I had made a different choice. Like turning my back on society and becoming a recluse-- although the choice I made 10 years ago (to marry and have children) pretty much precludes that now, and I won't simply abandon my family to make its own way. That's wrong.

It's not something I want to believe-- I have poured my heart and my soul and 15 years of my life into fighting to and past the point of exhaustion not to believe it (hence acceptance eludes me, and I get angry and mean, and sometimes forget that the things I want to lash out at aren't the people I'm talking to right now).

Into maintaining exactly the attitude that you have right now. I've dragged a good man and going on four kids into it-- not because I didn't know or didn't care, but because I believed that much and that hard. Ardently and wholeheartedly. Naively?? Yeah, I kind of think so.

And I keep losing the fight-- getting nothing for my effort but trouble and anger and pain and closer and closer to losing more and more-- because it's what I'm confronted with again and again.

It's more a reflection on the society we live in-- where being DIFFERENT (not even IMPERFECT, because all are imperfect) and being BROKEN boil down to one and the same-- than on you. Actually, it's entirely a reflection on the society we live in. Personally, I think our society is f*****g sick. In the highest, deepest, darkest, most disgusting degree. I hate it and I hope it crashes and burns.

It's our society, not you, at which the venom is directed.

I hate to sound like a born-again Evangelical Fundamental Dominionist religious nut-- but I think something akin to the Devil is driving this world and at this point I'm just about eager for God to decide it's time for one Godallmighty Spring Cleaning.

I think you're probably more functional and in general a "better human being" than the "normal" people...

...but they've got the numbers and it's their world.

I don't like that, but I can't change it. You can't change it. Read the comments sections in some of the articles that have been published in the mainstream media over Autism Awareness Day-- whether the stats are 1 in 150 or 1 in 110 or 1 in 88 (what the CDC is saying now) or 1 in 33 (what studies done in other countries with less respect for individual choices suggest), there aren't enough of us to change it.

For that, those numbers would have to be reversed.

They have the power. They make the world. They decide who is abled and who isn't. It sucks to bloody blue f**k and back, but that's the way it is.

You can deny it-- which I used to do; I was pretty happy, but I got myself into a shitpot full of trouble with unwise disclosures and decisions I believed in that turned out to be bad.

Not even because they're objectively bad-- it's not as if I'm an abusive parent or a worthless wife or anything like that. I'm not. My kids are a little wild, a little annoying, but they're clean and healthy and thoughtfully disciplined and well-fed. For the most part better educated than they'd like to be-- I kept my 10-year-old up too late last night because she asked me a question about Afghanistan and we got off on a tangent about geopolitics. I cook and clean and handle all the business for our household-- or at least did until I got really sick about a year and a half ago, and I'm slowly taking it back over. Hubby hopes every day that his folks and their dog will all be back on their feet by the end of April so I can come home, straighten out his diet, and save him from housekeeping, laundry, and having to unpack our PODS unit and fix the sink plumbing himself.

Bad because they're not in line with the norms-- the kids are a little wild, their company manners last for about 10 minutes (at least in the case of the 4- and 2-year-olds), my very probably AS 4-year-old isn't quite up to developmental par on emotional control, he still stims where people can see him, talks too much, and cries too loudly and too easily, and he's going to school in the fall.

I can't satisfy all Hubby's emotional needs single-handedly and make him feel good enough to prop up his own weak (but rapidly improving) self-image. Physical intimacy is work for me and it shows. I needed half an hour or an hour to put myself in the right frame of mind when he showed up, out of the blue, at the end of a very busy day, for our anniversary-- and it hurt and offended him and his parents.

They're not in line with the norms, and they're going to be continually assaulted until they are destroyed.

Human nature. I hope Aspies/Auties really ARE another species. A Neanderthal remnant or whatever. A few individuals may be all right, but I don't care much for Homo sapiens as a group. On the whole, I think I'd prefer a pack of rabid wolves. Literally.

What I'm left with is, you got 4 choices:

1)You can get pissed about it-- well, good luck. Maybe you'll change something, for someone, someday. I hope you do. I'll even allow that it's possible.

It might be working for the American Indian-- if there are enough of them left to pull out a comeback.

It worked for African-Americans-- but you think about what happened to Dr. King and more than a few Freedom Riders. Make no mistake: It was Dr. King's followers-- the guys and girls who let themselves be beaten half to death and preached accepting it-- that made the change, not the likes of Malcolm X and the Black Panthers.

Not that Malcolm X met any better fate-- Dr. King just got glowing reviews and a day named after him after he got shot. And if it had been up to that bunch, it would have gone to open war and then Jim Crow would have turned back into slavery while good ole white boys slapped each other on the back and said, "We told 'em so."

You think about what happened to the lucky ones that lived to see the change. Think about all they went through, from the abolitionists to the civil rights movement-- and then you take yourself a trip to someplace like Meridian, Mississippi and see how much they've really "changed."

Then decide if it's worth the fight. If you want to run the risk of being a martyr for less than you'd hoped. If you think so, I wish you good luck and God speed from the bottom of my bitter, broken little heart. You're young, you're strong-- good luck, and God speed. "Dare to dream, rebel daughter," to paraphrase an old tune from way back in the day.

If you make it, I'll be the first to throw flowers. I will personally make sure history remembers you and all the other brave ones. If I'm still here, I will erect your monument if I have to do it stone by stone with my own hands.

If you're still here, I will get down on my knees and tell you that I was wrong and I'm sorry with tears of joy in my eyes and a song in my heart.

I'm NOT being sarcastic. At all.

3) You can get down about it-- which I've done. That ends on a psych ward-- or a mortician's slab. No thanks. Don't recommend it.

I guess God has a special place in His heart and a special room in His home for Aspies-- I think He probably made us to give this world a chance to learn a lesson it just does not want to see-- but I'll see it when He wills it, not when I throw in the towel and demand to go home.

Even sad and angry-- even if I lose my spouse, my kids, my home, all four of my friends, what family I have left, and every other piece of the life I desperately cherish-- I'm standing in the sunshine and breathing the free air.

If I end up panhandling and living under a bridge-- I'm standing in the sunshine and breathing the free air. The wind and the clouds, the flowers and the snowflakes and the water-- those things are still there. I can wash my armpits in a gutter, scavenge some clothes and a hairbrush, and go to the library and read about whatever fascinates me this year.

No more, "It's so wrong, so unfair" for me. It is what it is. I'm alive. So are you. Existence belongs to all that exist.

Which leads directly to the last option, and the one I'm learning to be content with:

4) You can accept it, and try real hard to be happy anyway. I wish that for you. Let 'em say whatever they want. You know who you are. God knows who you are. Let them call you disabled, let them talk to you like some kind of idiot, let them say whatever they want and label you anything they please...

...and then turn your face to the sunshine, think about what you have, and have a good day anyway. Shake out your hair, spin around in the sunshine (or whatever behavior suits you), and laugh so loud God hears you all the way up in Heaven (or where-ever).

My sad advice would be-- Don't climb so high. You very well may be-- probably are-- quite capable of doing it. But they-- the small-minded well-meaning a**holes of this world-- will not allow you to sit in the tree. If-- make that when-- you manage to get up there, they'll shove you out and gently scold, "We told you so; this is for your own good" as you are falling.

But-- maybe I'm wrong. Maybe I'm just too tired to see that there's still a reason to fight. Maybe you can pick up this banner and carry it awhile, and it will advance, and someone will pick it up and take it still farther after you.

If that's what you really want, go for it-- but make an informed decision, not an idealistic one.

Whatever you choose, good luck and God speed.

Note: I'm still working on getting what I want to say right. It's going to take a while. I'll stop editing this post and start adding posts to change or add things.

And by the way, gang--

--sorry, but I'm aware that this hurts. And it doesn't change a thing.

One trait of AS-- one I think is useful to the human populace as well as making those who have it profoundly unlovable-- is valuing facts over feelings.

This does not mean that one does not care for feelings at all. It simply means that facts are, tend to be, or can be seen as taking precedence.

One could also consider valuing not hurting feelings over correctly and accurately assessing and stating the facts of the situation to be a pathology. A delusion, if you will. It can certainly be argued to be equally dysfunctional.

If you think that I'm just out to spit in your face(s) or that I don't care for you (all), you're mistaken.

If you think those facts don't hurt me every bit as much-- so much so that sometimes I find someplace where I can sit alone in the dark and tap my head against something hard or rock back and forth while screaming like an enraged 2-year-old-- then you're just wrong.

The fact that it hurts like Hell, I'm sorry to say, doesn't mean that it isn't so.

I have the exact same issue as you. I was in programs for people on the Autism spectrum who also had intellectual disabilities. Those programs were awful. They do not cater to Specturm who are more capable of getting careers that are professional or competitive. I left them, and now have my Associate's Degree in General Studies. I even found a rehabilitation place in my state who is looking for a great career for me, which I can use my talents, skills, and interests in. I am looking to be a research assistant. But having Asperger's, I am still qualified for the state developmental disabilities funding, which put me in those places in the first place. The social worker is still shoving programs up my butt, but I said NO. By law they can't force you to do anything. Good luck and continue to fight for your rights. You are your own advocate!!