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danum
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12 Nov 2015, 4:30 pm

Since my diagnosis of Asperger's syndrome I've been assessed, interviewed, asked to fill in forms, told what help and support is available, but not once do I ever remember being asked what I actually want and how I think I might best be helped.

Has this been anyone else's experience?


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BeaArthur
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12 Nov 2015, 5:00 pm

Danum, you could, you know, just start spontaneously talking about that to your case workers. In fact, you could explore what basis and what right your agency has to interfere with your employment efforts. From there, you could negotiate a resolution that serves them somewhat while serving you somewhat.

Please don't give me reasons why this isn't possible. I'm giving you a gift here - take it or leave it.


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Ashariel
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12 Nov 2015, 6:31 pm

BeaArthur wrote:
Danum, you could, you know, just start spontaneously talking about that to your case workers. In fact, you could explore what basis and what right your agency has to interfere with your employment efforts. From there, you could negotiate a resolution that serves them somewhat while serving you somewhat.

Please don't give me reasons why this isn't possible. I'm giving you a gift here - take it or leave it.


BeaArthur, you could, you know, stop giving people ultimatums in which they must either follow your advice, or suffer your condemnation for choosing to 'wallow' in their problems. Especially for complicated problems, which you might not fully understand as well as you seem to think you do.

Please don't give me reasons why this isn't possible. I'm giving you a gift here - take it or leave it.



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12 Nov 2015, 6:44 pm

Oh, aren't you clever, Ashariel. I thought I had you on ignore, but I guess I don't understand how the "foe" thing works here.

Nice job hijacking someone else's thread, by the way.


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Ashariel
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12 Nov 2015, 6:51 pm

Danum, I apologize for disrupting your thread. Please carry on!



Misery
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12 Nov 2015, 7:20 pm

BeaArthur wrote:
Oh, aren't you clever, Ashariel. I thought I had you on ignore, but I guess I don't understand how the "foe" thing works here.

Nice job hijacking someone else's thread, by the way.


He has a point though. That reply you gave the OP, frankly, was uncalled for. There's no reason to act that way.

And hell, I can give you a reason RIGHT NOW (as in, it took me 3 seconds to think of this) as to why it might not be possible for someone: Anxiety. Sometimes just spontaneously bringing up a new conversation with people just aint in the cards for some of us. I know *I* would have a bit of trouble doing it (though in the end I'd bloody well do it anyway, but that's just me). And that's just one reason. Try thinking about that, before saying such things to someone you very obviously dont know.


Danum, I think I know what you mean with this. To some degree, I think those people are mostly just trying to do their jobs (probably), figuring out, as best they can, what might help and what might work best. But they are having to do it with limited info, which is something to keep in mind.



btbnnyr
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12 Nov 2015, 10:16 pm

I suggest that you make a list of several things that you want help with, then ask to have meeting with the support people about this. I think you have to take initiative on this, because other people may not know your specific needs.


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zkydz
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12 Nov 2015, 10:36 pm

btbnnyr wrote:
I suggest that you make a list of several things that you want help with, then ask to have meeting with the support people about this. I think you have to take initiative on this, because other people may not know your specific needs.


I think the list is a good idea. Worst case scenario is that you just hand over the list. Mo need for any uncomfortable chit chat and looking at people.


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danum
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13 Nov 2015, 1:25 am

I think the main issue that I'm faced with is that I have to deal with several different agencies, each of which can help me in certain areas, but not others. If there was one person, one person who could make things happen for me by approaching all the different agencies and service providers and negotiating a package based on me being able to state exactly what I want/need I think this would be far more effective.


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Malus_Domestica
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13 Nov 2015, 2:08 am

danum wrote:
I think the main issue that I'm faced with is that I have to deal with several different agencies, each of which can help me in certain areas, but not others. If there was one person, one person who could make things happen for me by approaching all the different agencies and service providers and negotiating a package based on me being able to state exactly what I want/need I think this would be far more effective.


Could you then perhaps ask to be assigned such a person? I don't know how the health system works where you live, but maybe they could offer some sort of coordinator?


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corroonb
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13 Nov 2015, 2:14 am

I know it's very difficult but if your needs aren't being met and you aren't being asked, you might want to just tell them what you want. If you know what you want that is.

I think writing out a list of practical things you want would be a good start even if you didn't share it with anyone.



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13 Nov 2015, 2:42 am

I have been asked


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MoonUnitPatrol
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13 Nov 2015, 12:02 pm

danum wrote:
Since my diagnosis of Asperger's syndrome I've been assessed, interviewed, asked to fill in forms, told what help and support is available, but not once do I ever remember being asked what I actually want and how I think I might best be helped.

Has this been anyone else's experience?


Yes. I had this very discussion with my therapist just yesterday. I explained to her that since I was diagnosed with Aspergers by my previous Psychiatrist 6-Years ago, seemingly not one mental health care worker of any sort cares to even recognize the fact that I do indeed have Autism never-the-less ask me deeper questions about it. When I spoke to her about this and was done talking she just stared at me. (Point proven :roll: )


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zkydz
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13 Nov 2015, 12:09 pm

MoonUnitPatrol wrote:
danum wrote:
Since my diagnosis of Asperger's syndrome I've been assessed, interviewed, asked to fill in forms, told what help and support is available, but not once do I ever remember being asked what I actually want and how I think I might best be helped.

Has this been anyone else's experience?


Yes. I had this very discussion with my therapist just yesterday. I explained to her that since I was diagnosed with Aspergers by my previous Psychiatrist 6-Years ago, seemingly not one mental health care worker of any sort cares to even recognize the fact that I do indeed have Autism never-the-less ask me deeper questions about it. When I spoke to her about this and was done talking she just stared at me. (Point proven :roll: )


My beef is that if you are high functioning, they just seem to think "Well, why don't you get it?" Ummmm, apparently I can't because if I could, I would not have had these documented issues. And, if you blow up at them, then you're 'out of control'. If you withdraw, it acquiescence by way of not 'advocating' for oneself. UGGGHHHH...it's this type of thing that has always stopped me cold. My natural tendency is to withdraw. Then when things go sideways, I get blamed for not being more of something that I can't understand.

Real catch 22 here.


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MoonUnitPatrol
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13 Nov 2015, 12:19 pm

zkydz wrote:
MoonUnitPatrol wrote:
danum wrote:
Since my diagnosis of Asperger's syndrome I've been assessed, interviewed, asked to fill in forms, told what help and support is available, but not once do I ever remember being asked what I actually want and how I think I might best be helped.

Has this been anyone else's experience?


Yes. I had this very discussion with my therapist just yesterday. I explained to her that since I was diagnosed with Aspergers by my previous Psychiatrist 6-Years ago, seemingly not one mental health care worker of any sort cares to even recognize the fact that I do indeed have Autism never-the-less ask me deeper questions about it. When I spoke to her about this and was done talking she just stared at me. (Point proven :roll: )


My beef is that if you are high functioning, they just seem to think "Well, why don't you get it?" Ummmm, apparently I can't because if I could, I would not have had these documented issues. And, if you blow up at them, then you're 'out of control'. If you withdraw, it acquiescence by way of not 'advocating' for oneself. UGGGHHHH...it's this type of thing that has always stopped me cold. My natural tendency is to withdraw. Then when things go sideways, I get blamed for not being more of something that I can't understand.

Real catch 22 here.


Yes, agreed.

Well, the one thing she did say, actually, and I am going to call her on it next time we meet: I was not sure how much she knew about Autism/Aspergers (although she has a Masters in Psychology); I asked her if she knew what a "NT" (neuro-typical) was - She said "No". I explained that I was not this at all or in any way and that she, for example, was one. Her reply: "It sounds to me that it is important that you learn to adapt to non-Autistics and their ways." I thought: "What?"

Of course it is one-sided. I need to adapt, not them. Why don't we all, both groups, try to understand one-another? Why am I alone expected to "adapt" to a world and a mind-set of people I truly disagree with and can barely begin to understand?


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zkydz
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13 Nov 2015, 12:48 pm

MoonUnitPatrol wrote:
Yes, agreed.

Well, the one thing she did say, actually, and I am going to call her on it next time we meet: I was not sure how much she knew about Autism/Aspergers (although she has a Masters in Psychology); I asked her if she knew what a "NT" (neuro-typical) was - She said "No". I explained that I was not this at all or in any way and that she, for example, was one. Her reply: "It sounds to me that it is important that you learn to adapt to non-Autistics and their ways." I thought: "What?"

Of course it is one-sided. I need to adapt, not them. Why don't we all, both groups, try to understand one-another? Why am I alone expected to "adapt" to a world and a mind-set of people I truly disagree with and can barely begin to understand?


Here's my little bit of paranoia on that type of thing.

If you are over-prepared, I have sensed that they think you are TRYING to get the diagnosis. There is a thread on the "Special Snowflake" issue.

Why the hell would I want to be Autistic to any degree? Why would I want to 'Not Fit In" when that has always been my goal in life? I don't want to be a drone. But, I do want to do the things that they take for granted everyday. An evening out with friends? Enjoying a party?

I hate Birthdays because it draws unwanted attention to me and parties and well...YUCK! THAT shouldn't bother me, but it does.

But, recently I realized that I really don't hate birthdays. I just hate that it always involves some sort of social situation that really crushes me. But, I do like getting a phone call from someone in the family. And, I have never gotten a phone call from a friend because I have never really had friends. But a nice card or text or something that does not involve much interaction with people is nice.


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Diagnosed April 14, 2016
ASD Level 1 without intellectual impairments.

RAADS-R -- 213.3
FQ -- 18.7
EQ -- 13
Aspie Quiz -- 186 out of 200
AQ: 42
AQ-10: 8.8