How do I get help when I can't explain myself (long post)

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tchek
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27 Aug 2012, 10:37 am

How do I get help when I can't explain myself and when I miraculously manage to do, I'm not taken seriously?


Little background:


I quit school at 14 with the vague diagnostic of "school phobia", I then entered heavy depression for almost 20 years (bullied by my surrounding), of social isolation, depression which rather worsened than the opposite, I'm now 32.
I was given invalidity benefit at 18 which was withdrawn after a few month, when I was convocated in an inspection office (or whatever it was called), and in front of the inspector I became mute, I couldn't say a word. They decided for that reason to take back my benefits, and I then had no income anymore whatsoever for 14 years to this day (my mother sent me food). I was literally curled up in a couch for 14 years with books as only companion.

I decided to consult a few years back (which is a very difficult decision for me), but I was confronted with the sceptical attitude of the so called therapists, because of my inabilty to talk (I can formulate full sentences only since my 20yo because I trained in front of a mirror) and thus my inability to explain myself.

When I'm overwhelmed with frustration, I bite my fingers which are heavily damaged (20 years of continuous bites). And I become mute, which usually attract laughters or further bullying.


I found work at 27 in a store, which thought me what I already know: it was an aspie hell. Fluorescent colors everywhere, bullying coworkers... I broke down after a month and quit. With the little money I earned I bought a low end laptop and shoes. That was my only income for 14yr .

When I explain my childhood and teenage years to my former therapists, they respond "stop talking about the past", I explain the issues of my work they responded "it's just one bad experience"....
....then I'm getting frustrated and tell them that my life is hell and that I think I have asperger I'm told "you are not apt to tell whether you have assburger or whatever you think you have, specialists are", then when my frustration reaches height I stutter then become mute, a long blank follows, and with condescending, paternalistic smile, they get up and I'm sent back home angered and frustrated not having been able to explain the urgency of my problem, and am back at point zero, in my loneliness, my depression, my zero income, my lack of private space, no social nor affective life and a growing inability to get out. My laptop saves me. I have serious back problems which prevent me to walk more than 10 minutes, too.


To further my inability to explain the urgency of a problem, let me tell you this:
I went to the doctor with a numb left arm, heavy chest pains (after physical effort), which would normally be enough to send me to hospital ASAP, yet my doctor shrugged it off and say it's perhaps nothing k thks bye. I was not able to explain how serious and urgent my problem was.


SO what can I do? I had faith in life in my 20... I was passionated by so many subjects, foreign cultures, languages, people, sociology, psychology, but no one gave me a chance, and now I'm more and more hopeless.

sorry for the long post



Vomelche
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27 Aug 2012, 12:06 pm

The therapist sounds like a write off, if you are still interested in therapy try to find one that specializes in aspergers.

I had same problem with the doctors, because they are desensitized nowadays. The problem is that there are a lot of people who really do complain over things that are not serious, and are just seeking attention, so it gets hard telling the difference.



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27 Aug 2012, 12:25 pm

The therapist you're going to sounds like a very bad one.
I think I can imagine that in your situation there could be some physical problems you have that seems very serious. You can experience them in that way. And then maybe a doctor can't help you with them and just shrug it away, because he doesn't find any physical symptoms that are Concrete enough that he can work with. There may be this kind of misunderstanding.
And I could also imagine you experience the behavoir of the people around you in an intense way. And therefore would classify what they do as bullying. Maybe they are, but your situation may indicate that you're vunerable and impressionable and they can't moderate themselves in many social situations so you can feel better. It's an AS thing. NTs just behave like that sometimes..

But therapists shouldn't. They should take you seriously, it is their job. And they should understand your situation. It seems like they're even walking Over you. I would think you need understanding from people like that more than anything. You shouldn't take it if they talk to you like that. If you can't show them that, by some way of communication they can understand, you can maybe find another therapist that you know is more humane and understanding. Maybe you could write down what is bothering you and show it to them. It should be possible.

It seems like you have serious problems and experience life as a hell, like someone with AS would do, but you need someone who can understand that. I don't know where you can find them where you live. Try to show the therapists what you feel when they react like they do, and try to get a therapist that can help you on Your premises. It is the only way. They can't treat you like you were someone that was NT or didn't have the problems you have.



tchek
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27 Aug 2012, 1:49 pm

Vomelche wrote:
The therapist sounds like a write off, if you are still interested in therapy try to find one that specializes in aspergers.

I had same problem with the doctors, because they are desensitized nowadays. The problem is that there are a lot of people who really do complain over things that are not serious, and are just seeking attention, so it gets hard telling the difference.

Thanks, I think one problem too is that I live in a French speaking zone, and there are issues about France and asperger as far as I see. You are right that there are tons of attention seekers and we take the risk of appearing to be "one of them" and my experience is that therapists are rolling their eyes at the mention of "asperger", they are thinking "oh not again", as if it is the fashionable thing to be.



tchek
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27 Aug 2012, 2:03 pm

Underscore wrote:


But therapists shouldn't. They should take you seriously, it is their job. And they should understand your situation. It seems like they're even walking Over you. I would think you need understanding from people like that more than anything. You shouldn't take it if they talk to you like that. If you can't show them that, by some way of communication they can understand, you can maybe find another therapist that you know is more humane and understanding. Maybe you could write down what is bothering you and show it to them. It should be possible.

That's exactly my plan actually. In a sense, I wrote that post above to write down my situation so I can look at it clearly. I plan to actually write my problems on paper, as it would be impossible to tell in front of a therapist what I just wrote, I would mix everything up and forget half of it.

I tend to mute when I feel emotion or when I'm pissed off. For exemple one therapist I had, I told him that whenever I pass by my former school, just the peculiar smell of the place is enough to generate anxiety... he responded in a very condescending tone "so you're telling me that you dropped school because of a smell? :roll: "; which I thought was the most idiotic thing to say; I was so pissed off by his response that I began to stutter and shutdown. Most therapists, doctors or inspectors are smartasses who systematically think they deal with fakers (unfortunately in my area there are tons of them).


Underscore wrote:
It seems like you have serious problems and experience life as a hell, like someone with AS would do, but you need someone who can understand that. I don't know where you can find them where you live. Try to show the therapists what you feel when they react like they do, and try to get a therapist that can help you on Your premises. It is the only way. They can't treat you like you were someone that was NT or didn't have the problems you have.


If only I had people who could understand me, but it feels like instead of being helped, I was "punished" for my issues. My family just think I'm a lazyass and a weirdo I'm given no chance for anything. I had a bullying stepfather who threatened me agressively and repeatedly by yelling that I basically "did nothing" etc...

Like most AS, I have a hard time being heard and being taken seriously



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27 Aug 2012, 2:18 pm

Yeah. Like most AS you probably have problems with misunderstanding others and others misunderstanding you aswell. I've been stuck in a painful loop with those problems earlier. If you have AS they would be very evident and affect your life extensively



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28 Aug 2012, 10:51 am

You are probably even more autistic on the spectrum, if it causes you mutism. I know a guy like that, but I don`t think he even knows he has aspergers and I cant really tell him about it because I don't know him directly. Its unfortunate that sometimes there is not enough help available, for the most part we have to survive independently.



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28 Aug 2012, 11:54 am

Vomelche wrote:
The problem is that there are a lot of people who really do complain over things that are not serious, and are just seeking attention, so it gets hard telling the difference.


What do you base this comment on? Going to see a psychologist etc. is stressful, means talking about difficult issues, and clearly someone would only do this if the issues were bothering them enough to do so. You have to potentially lay bare your life and your soul, in some instances spend money, waste time out of your life/work/away from loved ones. I seriously cannot believe anyone would do that 'for attention'. If they are delusional about having a problem that warrants a psychologist then that in itself is a mental health issue. Why would someone do this for no reason? It must be affecting their quality of life in some way, and everyone deserves peace of mind and a reasonable quality of life.

It's this type of attitude that contributes to false beliefs in society and makes things hard for people to seek the help they genuinely need, whether it's for AS or mental health issues.


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28 Aug 2012, 1:00 pm

I base this on people who are not sick, but feel that they are sick in their head and constantly seek medical attention, there are such people. Often some reassurance will simply make them feel good again. Like someone who will go to the doctor, because they got a paper cut. The medical industry is already way overburdened these days, and have to prioritize more urgent issues because they cant get to everybody in time.

Unfortunately people with mental illness often get wrongfully labeled with this, and there is not enough resources to help them either, its a growing pandemic.



tchek
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28 Aug 2012, 2:49 pm

Vomelche wrote:
You are probably even more autistic on the spectrum, if it causes you mutism. I know a guy like that, but I don`t think he even knows he has aspergers and I cant really tell him about it because I don't know him directly. Its unfortunate that sometimes there is not enough help available, for the most part we have to survive independently.


Actually, what I call "mutism" is more like a shutdown... I'm overwhelmed and my mind just turns off.



legomyego
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28 Aug 2012, 10:42 pm

i find that i also bite my fingers when i have a melt down

usually the finger that you point with, at the second or middle nuckle of the finger

sometimes it leaves bruises...but this is the first time i've heard of someone biting their fingers and not nails as many people do.

i find klonopin taken at the time of shut down helps me to continue on with my day instead of descending into a dark hole...but its addictive and supposedly causes brain damage....so not a perfect solution...



tchek
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29 Aug 2012, 7:59 am

legomyego wrote:
i find that i also bite my fingers when i have a melt down

usually the finger that you point with, at the second or middle nuckle of the finger

sometimes it leaves bruises...but this is the first time i've heard of someone biting their fingers and not nails as many people do.



I do indeed bite my middle knuckle of my index finger. I won't show a picture of it because honestly, it's gross.
I wonder what causes this self mutilation...



tchek
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31 Aug 2012, 8:23 am

I just had a discussion with my brother and mother, and I spoke about my problems and they said "it's your fault, your problem is that you never ask for anything and do nothing... so what happens to you, you deserve it"


So basically, instead of being helped for my difficulties (aspergers etc...), I'm put down and sanctioned for it, which amplified whatever problems I have.



Samian
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31 Aug 2012, 9:01 am

i find it so hard to relate to your situation in some ways. you seem to understand in some ways the problems that you have and yet when you reach out ot your family and therapist they blame you for your situation??? this is odd?? perhaps it's much more complicated than what I'm reading - the situation with your family.

would it help if you wrote down what you need and hand it to people? I know myself I can read 10x faster and 100x more acurately than listening to poeple.

I would suggest you do it - find a new therapist and get the help you need - it;s out there -

The fact that you're reaching out ot people is good - just keep doing it!

hope that helps - I wish you all the best



tchek
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31 Aug 2012, 1:52 pm

Samian wrote:
i find it so hard to relate to your situation in some ways. you seem to understand in some ways the problems that you have and yet when you reach out ot your family and therapist they blame you for your situation??? this is odd?? perhaps it's much more complicated than what I'm reading - the situation with your family.

would it help if you wrote down what you need and hand it to people? I know myself I can read 10x faster and 100x more acurately than listening to poeple.


Thanks. Well you are right, I reach out to my family and therapist and they blame me for my situation instead of actually helping. My take is that I can't communicate my needs well enough and give off the wrong message. It's very hard fo me to ask for help and when I do, it doesn't work so I don't bother. Of course it's hard to explain a whole life in a post so this isn't the whole picture.
Actually I failed to make them understand (because I don't have the qualification or credibility to do so) that my "issues" are a part of a condition, and that I shouldn't be put down for it, but helped. That's the problem of not having a diagnosis, lack of credibility.

Aspies are supposed to "lack charisma", well maybe that's it, I can't "make myself heard" or understood, because people just don't listen, I guess.



tchek
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22 Dec 2013, 5:30 pm

I bump my thread.

I'm now seeing a rhumatologist, following back problems, and she suspects a connective tissue disorder (which might be indirectly linked to asperger/autism) due to my low muscle tone and a few other neuromuscular issues.

I should add that when I was a child (6 or 7 yo), I was vaccinated twice for Poliomyelitis by accident (at school), and contracted the disease which was quickly dealt with; but I heard there are lifetime sequela.

I still have no income.