Ashamed of my autism to the extent of ... I don't know what.

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Its not pleasant hearing your mother talk on the phone about how ret*d you are and how you can't deal with services of autism when you are so autistic like me. She's not doing it on purpose, she signed up for this autism waver that the governor of pennsylvania *in the states* granted *I think* to high functioning older autistic adults it's for forms of various therapies/better medication to these forms of people, but ... they are all into REFORMING your entire life as society would want it, and I can't do that, so I just feel like a bum you see. Whenever I go out of the house also I vomit, get panic, and fear... usually due to what is to be expected of me and people I do not know, that's my problem...

To be autistic is one thing, but then to know and feel truly ret*d that you can't function in society without a helper and there's nothing you can do about it... is another....

Well, fellow aspies, aspesgers, people who have aspies/aspesgers and all who support them or deny them, insult me all you wish if you must... I just thought I would share part of my life.

I know what you mean to being afraid of sticking so much as a hand out the door in fear of public ridicule. If we are not like them, we have a problem. All I can tell you is hang in there for you at least have friends here on WP.

My mom makes me feel like crap, too, even after my diagnosis two years ago. She even worked with autistic kids long ago, so she has no excuse.

Question, though. What is this thing you got signed by the PA gov't? I live in PA and I would very much like to know about this.


ETA: I know they changed laws for people under 21, but you are 24 so if there is some kind of adult equivalent, I'd like to know.

The 'services' seem to me to not be very helpfull to you. I can understand why you feel not so good. People trying to change you feels awfull.

I struggle with the fact that I can't take care of myself. I am lucky that I have someone that is beyond okay with helping me.

I feel guilty often, but he tries to tell me that it doesn't matter to him if I can work, or even if I get chores done around the house.

I don't think I could ever achieve 100% independence, and wishing it weren't so is energy that can be spent on achieving what /is/ reasonable for me.

No solutions here- it's a daily struggle. Bad feedback from unsupportive people - parents, espeically - really hampers the process in a nasty way.

Here's the info, I live in Pa as well. I didn't know anything about it. : Autism Waiver

Hi Paulos. I just read your post and I want to comment. Let's begin with a breakdown of your key points.

1. "She's not doing it on purpose" in regards to your mother saying you are ret*d like.
The world around us, often times including our family, may not see autism as it really is. People have a tendency to see it from an outside perspective and judge you from the standpoint of the average NT citizen. Well, we are autistic, and not NT---so we do stand out as different. And often times, people say things about us thinking that since we are autistic, we don't really absorb their comments like what your mother said. The most important thing here IMO is when you way she's not doing it on purpose. This shows you may understand her feelings more than she understands yours and that she means no harm by it. We as autistics are human beings like everyone else. We breathe the same air and eat the same foods. We are only different in our ways of thinking. And when it gets right down to it, there are no two people on earth that think the same way---NT included. In our autism support group, the worst acting attendee is the brother of an autistic boy. And this brother is not autistic---he is NT. They often have to leave the meetings due to his behaviour. You may kindly remind your mother that you are not ret*d, but an intelligent human being...and that it does bother you to be referred to as ret*d. But...approach her nicely and with respect...and hopefully she will understand you. You are her child---and she loves you.

2. "they are all into REFORMING your entire life as society would want it, and I can't do that"
I am against being changed too. I don't know for sure your reasoning for "can't do that." Is it because you feel you can't? Or is it because you don't want to? For me, I wouldn't want to change. But whatever the case, I am against trying to reshape an autistic person into the mold of an NT. A trapezoid just won't fit into a triangle unless you cut and reshape it---then it is no longer a trapezoid anymore. That's how I feel with autism. Why should we be reshaped/reformed? But...we can receive some therapy, not for reforming, but for skills such as eye contact and acting out our emotions in a scripted way. That isn't changing me autistically, but allowing me a way to be better understood by the world. But the idea of reforming your entire life doesn't make much sense to me. You would no longer be who you are, and they think they can cure autism? How can you cure a difference? (I see it as a difference) You are a human being with rights, and you should have a choice here to do what you feel is right for you.

3. "Whenever I go out of the house also I vomit, get panic, and fear... usually due to what is to be expected of me and people I do not know, that's my problem..."
This sounds somewhat like social anxiety or phobia. I can relate to that. One time I was at a party for my wife's workplace---so there were a lot of science lab people there---so it wasn't a wild party by any means---but a lot of social chit chat. Guess what happened to me? I got so ill from the awkwardness there that my lips swelled up and we had to leave. At home, the swelling went away. But, there are times I have to get in the masses. I do teach school afterall. But school is a little different---I am the authority figure in the classroom and not a part of the crowd. So, when I am in a social situation I try to be my own person anymore. Before I knew I was AS, I used to force myself to talk to people to fit in. Now, I relax with myself and say that it is ok to not talk. But many times I find myself talking anyway and having a good time. At first it is hard, but then it gets better. When I feel like being quiet again, I sit down in a less crowded part of the room. Sometimes I take some reading material with me to places so that I can absorb into it. And sometimes I daydream into my interests and try not to worry about what others are thinking of me (but I confess to often being concernced how others perceive me). But, I have to think of myself first...and not worry about the others. I have to be comfortable---or else I will make others miserable too. I know it's easier said than done, but you must put yourself first here and try not worry about fitting in. In this NT world, autism doesn't exactly fit in anyway, so be yourself and as Spock would say, "Live long and prosper."

4. "insult me all you wish if you must"
That statement actually makes me feel for you. I do have empathy when it comes to something like this. I care for you as a brother in autism. My life has been painful at times too. And as I am typing this, I have tears in my eyes over your pain. I can never insult a fellow autistic. Today, an autistic student went to the office in tears because he felt no one respected him. He said, "I respect others, but they don't respect me back." I wanted to cry. Yes, me, a 45 year old 6'1" 230 lb. teacher wanted to go to his room and cry. I still see his pained face and red eyes---that will haunt me forever. I can't stand to see other autistics suffer. I have empathy for autistics. I understand autistics---or at least I think I do. You have my full respect.

I want to help you, but I don't truly know how except to offer my support.

If you know me around here, you know me for positive thinking. But I have down times too. But I always try to look at good things to carry me through this tough world. So...what are some things that you find fun and enjoyable---such as interests, etc.?

Having glanced at the program, it does seem a tad insulting to someone relatively high functioning, but keep in mind it is also designed for those who are not. I don't think anyone means to treat you as if you were ret*d, but I understand how upsetting and distressing it is when they do. ASDs are still a puzzling mystery to most folks not on the spectrum - its very hard for them to wrap their heads around the concept of SPECTRUM and what that means.

Sorry to hear its creating such frustration for you. Just concentrate on more pleasant things for now and who knows, later you may find something about this program that actually CAN be helpful to you on some level.

Its hard to decide which is worse - having those around you talk down to you and treat you like an idiot when you're not, or having them treat you like you're a lazy bum and a loser because they don't believe you have a real problem at all.

If its not one thing, its another, eh?

yes i def understand what ur saying, i know im autistic, but before ppl even know im human its always my disability that goes first and that it takes a toll on me, ppl talk about me right near me, basically potted plant syndrome i made it up but it means when ur seen as jus a disability and people jus talk about what they want or who they want like ur jus another part of room not part of society. i know how slow i mean, i was refered to as ret*d as a child dont want to be refered to it today, but today i know how cognitively affected i am, its no mystery to anybody who hangs with me, but jus knowing is the worst part, that i wish i can do something abouit it, or change my ways u know? either way i know where ur coming from. For all my life utnil the past couple years i never once thought i was different or really disabled, it was normal for ppl to treat me like a potted plant, or treat me like im 2, but in the recent years i learned it wasnt normal, and that bothers me some.

it's pretty frustrating..... when I was a kid my mother used to get so frustrated! My dad would throw ridicule at me whenever I "messed up" [the phrase "messed up" often literally felt like I was a tiger who was failing miserable at flying].

Now-a-days being an older auspie is still difficult but quite rewarding as well...... rewarding in the sense that I often feel a step ahead of the people around me when it comes to understanding concepts and logic. Emotionally? Well yeah.... I don't have many real close friends. But I usually leave that in their hands...... if they wanna see past my weirdness and "otherness" they most certainly can...... but often they won't..... and I've learned to be ok with that .....well...... most of the time lol

Best way to deal with therapists and other "helpers" of that sort is to realize they are there to help you, not dominate you, and you don't owe them anything. Sometimes they will get it into their heads that they're wonderful saintly people for putting up with you, and you should just be a good little autistic and look up to them worshipfully and do whatever they say. NO. Heck no. Don't ever buy into that. They are people with jobs and you happen to be the person "hiring" them (yes, I know the government pays them). Think of them like the plumber who comes to fix your sink or the vet who neuters your cat or whatever. Don't give them authority they don't deserve to have. They are your equal, not your superior. You treat them with the same respect you treat any other human being, and not a speck more. Any more, they have to earn.

I have a LOT of problems now after a lifetime of being mistreated and misunderstood because of my peculiarities or 'differences' and like you now even have trouble setting one foot outside my front door.

Can't emphasize this enough.
Often, I hear people talk about a bad experience with therapist (well-meaning or not). Get a new one. Is it hard, stressful, frustrating for an Aspie to put themselves out there like that, repeatedly?

Yeah. It sucks. You probably won't do it unless you feel like you have no other options, like I did.

With a lot of work/research, I found a great therapist. Thought I found a great psychiatrist --- was wrong. Fired her. Scheduled to see a new one. I found myself backed into a corner over the Summer, being someone I didn't want to be. But, I do have some say, some control over what I do. And that includes who I choose to support and help me.