[ToeJam]

This has occurred a couple of times within a specific part of my care team (occupational therapy) that has resulted in me feeling powerless to correct or discuss my point of view in regards to 'what is best for me'.

In essence going through channels of proxy (via my psychiatric nurse) or on their own whimsy (so it feels from my perspective). I accept that I have mental health issues and a disablitly (re: Asperger's, though I still can't get my teeth round that notion)... but I can still speak for myself in a lucid and academic manner.

Just curious if anyone else has encountered this themselves? Sends my anxiety through the roof as I hate feeling 'powerless' to rationalize through issues, even if the result is the same... I hope that makes some kind of sense? Especially when it is to do with sudden unexpected changes that flips everything on it's head.

[Fuzzybear]

ugh yeah I think I get what you mean Also being in the uk and sudden changes in "care plan" without consulting me

I know that you won't let "them" ("care providers" IRL) silence you ... I understand how much some of this stuff sucks

[-jimi-]

When I was diagnosed I was instantly relabeled from quirky and very intelligent and creative, to unable to function, low IQ, poor understanding.

Yes, it annoys the heck out of me. And it also ate a chunk of my self worth.

In this day and age, they still don't understand Asperger's and intellectual disability are two very different things with DIFFERENT issues.

[ToeJam]

Thanks Jimi, good to read your take on this as I've been able to relate to your posting before. With regards to self-esteem, how have you tackled this to get back on track?

[-jimi-]

I work with it all the time. The problem is it so easily mixes in with things I really do have issues with. Like, some stuff is easy for me, some is hard. Before, I just saw it as that.

But after "they" started messing, it's like I "should" suck on many things. Which I do. Thing is I start confusing things I am bad at with things they think I am bad at. I know I am bad at stuff. So... maybe I am bad at... a lot of stuff?

I have to tell myself constantly what the real deal is. Sometimes it's not all that hard actually, especially if I crash and burn I usually bounce back quite quickly self esteem wise. But this is somehow different, I didn't know it could be more destructive (being treated like an idiot), than to be treated mean and harshly and unfair.

But it gets under my skin. For a while after my diagnosis I felt I wasn't even human. I was another species. Something just partially human. And all well meaning help has really made all that worse even if I managed to get up from the first blow.

The constant "I'm bad at this because I have aspergers"... that "voice" in my head. And sometimes I realize, waking up, and thinking, this is hard because it is hard! Most people wouldn't manage this! I ask very impossible things of myself, in the name of "everyone else can do it".

When I was diagnosed I was told aspies couldn't write novels. So I stopped for a while. Not even the fact that I already had, was proof enough for me. We have no imagination so it is impossible. Then I realized, but after quite a while, hey, is this really true?

Before I used not being ashamed of my shortcomings. And I took my strengths for granted. It was just how I saw things naturally. I thought it would be the way I would see things forever.

But no. All this doubt that was put into me. Can I do this? Am I too disabled? Am I smart? If I am, why am I sometimes so stupid? Maybe I'm not smart. Maybe I had some smarts in some areas, maybe I was stupid in most and just ignored them? Maybe I don't have a true area where I am smart? Maybe I am how they treat me, someone with intellectual disability. It would actually explain why I cope so poorly with life.

Some stuff that was lost in my life: I had a bunch of really smart friends. They made my brain work hard, made my brain have fun. They disappeared and I don't have many close friends now that are smarter than me. People who are less smart, and don't have a clue what you're talking about, often think you're just babbling. So then you think maybe you are. And lack of stimulation actually makes one dumber...

It's a fine balance. I have physical issues and a hellish chronic fatigue, I have ADD and problems with initiating and keeping things tidy. For me there is no shame admitting those to myself. Those things WILL hold me back. But there must still be things I can do. So why am I not doing more? Lazy? Dumb? Made feel helpless by "them"? I have no idea.

But reminders. Other people don't do everything better than me. My way can be as good as their way. What I like can be as good as what they like. Just because they don't believe in me does not mean I shouldn't. Thinking what I could do before I was diagnosed. How that is actually a real me. How I was allowed to be smart and creative.

I hit a rough spot with my writing just recently and I thought at once, aspies don't make good descriptions of people. That is why it is hard! Then realizing, most people are not good at this! Because it is hard. It is not hard because I am disabled in this area. Because I am not. It is so easy to extend disability into areas that are naturally hard. Just as easy as thinking one is lazy for having an actual disability in an area.

Should I stop babbling? Yes.

I will read your initial post and actually maybe answer something you ASKED instead of just rambling.

[-jimi-]

Our means of help are pretty cut off from each other where I liv. I actually have to ask them to talk to each other. I think in a way that is good. They only contact each other if I ask them to.

It seems different there. What things do they want you to do, that they have decided without consulting you? If they did that with me, I would feel humiliated to no end. Because I have a voice, I have a language, and I express myself well (when I try, LOL).

There is something innately unhealthy having "staff" sitting there taking notes and asking about your life, what you "want to do", hearing it is "all for you", still the conversation could just as well be you sitting on the floor and them sitting in a tall chair. Them writing papers about you and your "functioning", your "problem areas"... putting your name in each and every sentence, so much that you want to rip your name out of there so it will not be infected by their words.

If you even get a meeting. I understand there can be even worse things. Not being asked at all. People with half your IQ and no knowledge of your personality. But life trained them to "know" how good they are.

I have mostly made it on my own. Even in my deepest, darkest times, I have made it alone. Then there was no real help. I have lived through weird financial issues and made it, through weird friendship and made it, through grief and made it. Now they ask if they drop me off two blocks away from my home, will I get lost?

That makes me sad.

[StarGazingFish]

this has happened to me many times,i was severely classic autistic up to around 29 when my challenging behaviors stabilised and my verbal capacity suddenly developed due to the intensive daily therapies i was having,i am now moderate classic autistic with mild intellectual disability.
i have been spoken for many a time,whether its on the street or in a professional sense, people see me as useless.
i cant fault the social services learning disability [meaning intellectual disability in the US] team though whove supported me since a late teen because all but one of them uses person centred aproach/planning [look it up,im not that good at explaining],the pyschiatrist speaks for me all the time and makes massive assumptions about my mood and sleep and opinions, i hate her,i made a big complaint about her last week,i cant write so i had to get my staff to write it which was bad as i didnt want anyone else here to see it.

[ToeJam]

@Jimi

Not to diminish any of the other bits you said but the following made me laugh out loud as I can relate:

"Now they ask if they drop me off two blocks away from my home, will I get lost?"

Apparently, it is now known that I 'don't like' unfamiliar routes... which is bs, I've always enjoyed exploring... I just don't like people, so in everyday situations I stick to routes that are less busy.

With regards to what you said about writing... this definitely resonated a cord with me. Prior to my diagnosis I loved writing poetry (whether it was any good was irrelevant) and dabbling with creative writing... But I too took a big knock to confidence due the misconception you mentioned... and I guess it did become a self-fulfilling prophecy.

I am lucky in regards to still having friends that I had before (of high intellectual ability) but they do treat me with kid gloves a little... worried that I might break or something... it loosens up after a while (but the first hour can be hard going).

And on the flip of the coin, I've been attending social events with others who have Asperger's... and without meaning to sound pretentious, I find that I am also not being tested, nor am I exactly with like minded 'peers'. It has become glaringly evident how different those with Asperger's are depending on when they were diagnosed; In this I mean those who are diagnosed at a young age compared to a late life one... I for one know that I have developed filters of what is acceptable around neurotypicals because I had to having been in mainstream education. If that makes sense?

What you've written has given me a lot to digest, thanks. I didn't consider it rambling

@StarGazingFish, thanks for your reply. Fantastic to hear that things improved for you re your diagnostic level (gives me hope ). I know what you're referring to re person centered approach and I personally prefer that route (when given it, I've surprised those who are working with me due to my insight). Psychiatrists can be very hit and miss... have met those who are not full of themselves.... and plenty of those who are lol. Have you considered requesting a change?

[-jimi-]

Originally Posted by ToeJam

Not to diminish any of the other bits you said but the following made me laugh out loud as I can relate:

"Now they ask if they drop me off two blocks away from my home, will I get lost?"

Apparently, it is now known that I 'don't like' unfamiliar routes... which is bs, I've always enjoyed exploring... I just don't like people, so in everyday situations I stick to routes that are less busy.

I made a good word count for Nanowrimo today so I feel a little better about things.

And yes, heck, it is such a difference being diagnosed as an adult compared to those who were diagnosed young. I'm actually thankful I wasn't diagnosed young even if it was hell sometimes.

It is quite weird when someone squeezes you into the asperger's mold. In the decision I have that grants me some weekly support, I had to contact the decision makers and make them omit some stuff they put in. I think they did just because I am an aspie so I must have those traits. Like it said: "Jimi socializes only on their own terms. Others have to do what Jimi says in social situations."

I'm sure some aspies are like that. I have some aspie traits that are quite extreme surely, but this is not one of them. I socialize IRL to 80 % on OTHER people's terms. I have had to work with being more assertive, when it doesn't matter for me, my friends can decide and I will just tag along. I am quite flexible. I have very, very poor boundaries with some of my friends. They can basically walk in and rearrange my apartment (well almost).

I very rarely boss people around. I only take charge in very extreme situations where someone might get harmed or something bad might happen.

Anyway, I wonder why I would get lost in an area where I lived almost half my life, and most of those years with no assistance. Did they think I never went outside, ever? That stuff puzzles me.