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Crazyfool
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17 Sep 2015, 1:49 pm

**yes this is a double post from the media thread, because this needs to get out there**

No I'm not here to debate a cure by any means, but all the lurking I've done on these forums, I've come to the conclusion that an alarming amount of us seem to suffer a great deal. I for one, know I do a great amount.

I'm definitley not promoting any kind of cure and I don't wish to stir that pot either, but I feel something needs to be done whether it's therapy, medications, advocating, job place adjustments, societal adjustments....maybe a combination of all of these, I really do not know, but I feel something needs to be done.

I see too may people, young and old alike, talking about how suicide might be the most sensible means to end their pain. I can speak for myself here in saying that, I am truly burdened by my ASD, so much so that I think about checking out merely everyday.

There are cancer patients that live with dire pain everyday of their lives but still find pushing through it worth it to see another day, and the fact that some of us here suffer so much emotionally that they seem to think another day doesn't hold that same value.....It breaks my heart and all I want to see is this pain and suffering brought down to a manageable level.

Most of us here are completely verbal, hold average or even above average IQ's, but even with those assets in mind, many struggle to find fulfillment and happiness in life. Genevieve Edmonds, a well known advocate and author publishing books related to autism, had sadly decided to end her own life. I've done my research and there seems to be a trend among aspies and suicide that isn't being taken seriously enough.

What does will it take? How many more cries for help and posts of teen's and adults posting their plans to eventually die by their own hand, before we can finally do something about it.

Don't get me wrong, I am clueless as to what needs to be done but I'm consumed by the thought that something needs to be done and done quickly.

Any suggestions? What can we do as a community or better yet as a society to help people on the spectrum live more fulfilling lives? There's gotta be something or someone that can help....



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17 Sep 2015, 2:17 pm

Crazyfool wrote:
Any suggestions?

Yes, as a first step I believe we need to stop holding ourselves to neurotypical standards when making self-evaluations. Most of us do alright as autists, and this is perfectly fine. Not fitting in is fine, for an autists. Social incompatibility, and even the anxiety that often follows, is fine. It is not desirable, but it is perfectly normal according to the correct standard.



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17 Sep 2015, 2:25 pm

Thank you for your concerns, Crazyfool. I have given a lot of thought to this issue myself and can maybe give a more detailed response tomorrow when it's the weekend and I have more free time. It seems much more difficult for many of us on the spectrum to maintain the necessary self esteem and mental willpower one needs to get through stuff, and that a good many of our members have a day to day struggle.

There's no simple solution. I have learned a great many things since joining WP and would like to help wherever possible, which is one of the goals I had even at the time I joined, along with the desire to get as much info as possible.

We have The Haven of course, but doesn't seem enough... actually maybe we could start a thread in which those battling with suicidal issues can be asked for their input as to how we can help them. Issues such as depression usually need a medical professional's involvement but sometimes one may just want the strong shoulder of a "peer" to lean on: someone who's been there and understands them. They may not have such a support system among family or friends so our online community need to form a bond with them.


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17 Sep 2015, 3:53 pm

I think it really doesn't help that the general public and a number of parents of autistics have major misconceptions about autism and autistics. How you'd inform them I'm not really sure but some sort of campaign thing by autistics would help. I watched a video from buzz feed (or similar) that was on Facebook about Muslims saying I am a Muslim but I am also .... And I've seen other about things about Islam. Maybe something like that would be an idea to educate the general public. People seem to like things like that. Something that is simple not overly complicated. Like lots assume aspergers means almost nt, rather than it being autism, they always assume that to be autistic you must be 'low functioning' even though all that technically means is a learning/intellectual disability is present. A lot also seem to think that once you're over 18 you are no longer autistic or you just cease to exist. Maybe another thread could be made to create some sentences explaining some things, that can be used as a post elsewhere as an awareness thing or some thing like that? Just an idea.

On the other things I'm not really sure, as I'm pretty happy. I'm often completely oblivious to some things which probably helps with my contentedness. That's not really much help to anyone else though. I think often people try too much to be like nts, which won't work because they're not nt. there needs to be a certain level of compromise, however nts need to start compromising a wee bit more rather than the other way around.



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17 Sep 2015, 4:28 pm

tetris wrote:
I think it really doesn't help that the general public and a number of parents of autistics have major misconceptions about autism and autistics. How you'd inform them I'm not really sure but some sort of campaign thing by autistics would help. I watched a video from buzz feed (or similar) that was on Facebook about Muslims saying I am a Muslim but I am also .... And I've seen other about things about Islam. Maybe something like that would be an idea to educate the general public. People seem to like things like that. Something that is simple not overly complicated. Like lots assume aspergers means almost nt, rather than it being autism, they always assume that to be autistic you must be 'low functioning' even though all that technically means is a learning/intellectual disability is present. A lot also seem to think that once you're over 18 you are no longer autistic or you just cease to exist. Maybe another thread could be made to create some sentences explaining some things, that can be used as a post elsewhere as an awareness thing or some thing like that? Just an idea.

On the other things I'm not really sure, as I'm pretty happy. I'm often completely oblivious to some things which probably helps with my contentedness. That's not really much help to anyone else though. I think often people try too much to be like nts, which won't work because they're not nt. there needs to be a certain level of compromise, however nts need to start compromising a wee bit more rather than the other way around.


I think that first point you made about coming public and showing the world "hey I'm autistic but I'm also human and I bleed" could bring some sympathy towards us. I think it's a great idea and maybe some of us here could start some kind of collaboration of sorts to get the message out.

I also agree with what you said about trying so hard to be NT's, I spent my entire childhood and most of my adult life doing so. I think we need to get the message out that it is ok to be autistic and unlike the popular crowd.

The hardest thing for me is the social/emotional barrier I have between me and...well everyone. Here I am in my room all alone on my computer while I've got family just on the other side of the wall, just dying interact with me, but it is just too much, even though I love them dearly. That sucks, I just want to be close to people but seem to be fundamentally unable to do so.....It reminds me of the song " Big Eyed Fish" where all the fish wanted to do was catch a wave and be on land but couldn't breathe as a result of his big escape....



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17 Sep 2015, 4:57 pm

Crazyfool wrote:
tetris wrote:
I think it really doesn't help that the general public and a number of parents of autistics have major misconceptions about autism and autistics. How you'd inform them I'm not really sure but some sort of campaign thing by autistics would help. I watched a video from buzz feed (or similar) that was on Facebook about Muslims saying I am a Muslim but I am also .... And I've seen other about things about Islam. Maybe something like that would be an idea to educate the general public. People seem to like things like that. Something that is simple not overly complicated. Like lots assume aspergers means almost nt, rather than it being autism, they always assume that to be autistic you must be 'low functioning' even though all that technically means is a learning/intellectual disability is present. A lot also seem to think that once you're over 18 you are no longer autistic or you just cease to exist. Maybe another thread could be made to create some sentences explaining some things, that can be used as a post elsewhere as an awareness thing or some thing like that? Just an idea.

On the other things I'm not really sure, as I'm pretty happy. I'm often completely oblivious to some things which probably helps with my contentedness. That's not really much help to anyone else though. I think often people try too much to be like nts, which won't work because they're not nt. there needs to be a certain level of compromise, however nts need to start compromising a wee bit more rather than the other way around.


I think that first point you made about coming public and showing the world "hey I'm autistic but I'm also human and I bleed" could bring some sympathy towards us. I think it's a great idea and maybe some of us here could start some kind of collaboration of sorts to get the message out.

I also agree with what you said about trying so hard to be NT's, I spent my entire childhood and most of my adult life doing so. I think we need to get the message out that it is ok to be autistic and unlike the popular crowd.

The hardest thing for me is the social/emotional barrier I have between me and...well everyone. Here I am in my room all alone on my computer while I've got family just on the other side of the wall, just dying interact with me, but it is just too much, even though I love them dearly. That sucks, I just want to be close to people but seem to be fundamentally unable to do so.....It reminds me of the song " Big Eyed Fish" where all the fish wanted to do was catch a wave and be on land but couldn't breathe as a result of his big escape....


I have posted a thread http://wrongplanet.net/forums/viewtopic.php?f=3&t=293192

I think I'm lucky in the fact I'm not too fussed about spending time with other people, it must be annoying to want to but you can't (though I get that in plenty of other things). I find that people only seem to exist if they are actively engaging with me, like when they are somewhere else they just stop and wait till I'm back. It's weird and people always say did you miss me, and I don't and I can't understand why they miss me.



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17 Sep 2015, 6:57 pm

I think the problem is basically that autism directly impacts the ability to both give and receive social support. Everyone needs support in life. If you are disabled in some way you need more support than usual. And bad things can happen to anyone. But people with normal social ability usually know how to connect with people and find support when they need it. Autism directs limits that ability. And other people don't understand that limitation, so it's essentially invisible, and the invisibility of it only adds to the difficulty.

It's not just about having emotional support, it's all kinds of support, having job connections, people to help you pack your things to move, someone to give you a ride if your car breaks down, someone to help you if you get sick. Everyone needs help with practical things in life. If you are disabled, and/or depressed, those practical things alone can stack up fast and become really overwhelming. It makes it that much harder to deal with an emotional hit, like a death in the family, or losing a friendship. It all just keeps adding up. So it feels like there's nothing to look forward to, except more of the same, or worse.

For me personally the most crushing thing is that almost every connection I make with another human being ends up being really disappointing and hurtful, to the point that I'm just emotionally devastated and exhausted. If I had a great personal connection with someone, a partner, a close friend, a relative, I would feel different. I could find the strength to endure. But without it, all I can see is empty years stretching ahead of me.

A lot of things are missing in my life, and some of it could be helped with better support services or societal changes, but it still wouldn't give me that personal connection that I'm missing. I keep thinking there must be something fundamentally flawed or broken in me that makes other people unable to really love me. I don't know how many here can relate to what I'm saying, maybe some do and some don't. But I guess some probably feel the same way I do.



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17 Sep 2015, 7:32 pm

dianthus wrote:
I think the problem is basically that autism directly impacts the ability to both give and receive social support. Everyone needs support in life. If you are disabled in some way you need more support than usual. And bad things can happen to anyone. But people with normal social ability usually know how to connect with people and find support when they need it. Autism directs limits that ability. And other people don't understand that limitation, so it's essentially invisible, and the invisibility of it only adds to the difficulty.

It's not just about having emotional support, it's all kinds of support, having job connections, people to help you pack your things to move, someone to give you a ride if your car breaks down, someone to help you if you get sick. Everyone needs help with practical things in life. If you are disabled, and/or depressed, those practical things alone can stack up fast and become really overwhelming. It makes it that much harder to deal with an emotional hit, like a death in the family, or losing a friendship. It all just keeps adding up. So it feels like there's nothing to look forward to, except more of the same, or worse.

For me personally the most crushing thing is that almost every connection I make with another human being ends up being really disappointing and hurtful, to the point that I'm just emotionally devastated and exhausted. If I had a great personal connection with someone, a partner, a close friend, a relative, I would feel different. I could find the strength to endure. But without it, all I can see is empty years stretching ahead of me.

A lot of things are missing in my life, and some of it could be helped with better support services or societal changes, but it still wouldn't give me that personal connection that I'm missing. I keep thinking there must be something fundamentally flawed or broken in me that makes other people unable to really love me. I don't know how many here can relate to what I'm saying, maybe some do and some don't. But I guess some probably feel the same way I do.

I absolutely agree with you. The last two paragraphs express exactly how I feel. I keep wondering if I'm "fundamentally flawed and broken".

I think the most difficult part of the problem is that it's a rather invisible problem. Many of us are seen as just obnoxious/unpleasant/selfish/difficult people. And who's willing to try to understand the problems of such people?



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17 Sep 2015, 7:41 pm

I can take care of myself pretty well but that doesn't change anything about the ways people can act as they learn more about how I think. As a result I'm not particularly swayed by sympathy any more, unless it's on the basis of common ground and experiences. Basically my whole social life lately has revolved around my work and I'm working even harder to change that. If NTs started picking up on this simple reasoning I'd have it made...


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17 Sep 2015, 8:00 pm

jk1 wrote:
I think the most difficult part of the problem is that it's a rather invisible problem. Many of us are seen as just obnoxious/unpleasant/selfish/difficult people. And who's willing to try to understand the problems of such people?


Yes. I feel like no one understands what the problem is and no one really wants to either. They just assume that I'm normal so if something goes wrong they act like I'm doing it TO THEM on purpose.



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19 Sep 2015, 4:22 pm

Yeah, this sucks.

I mainly have issues with executive function problems (especially demand avoidance and inertia) and hypersensitivity. It seems these are pretty common problems among people with autism, but there is almost no support out there for these. In fact, organizations that provide support for or do research on autism seem to rarely even acknowledge that these problems exist. I could probably get behind the curebies if this was the stuff they were trying to cure.

Society has trouble wrapping its collective brain around depression and suicide in general. The fact that autistic people are stereotyped as lacking emotion and being super-rational doesn't help. Also, the fact that autism is stereotyped as a problem only children have, combined with the fact that children are stereotyped as being immune to depressive disorders or suicide....

Quote:
I think the problem is basically that autism directly impacts the ability to both give and receive social support. Everyone needs support in life. If you are disabled in some way you need more support than usual. And bad things can happen to anyone. But people with normal social ability usually know how to connect with people and find support when they need it. Autism directs limits that ability. And other people don't understand that limitation, so it's essentially invisible, and the invisibility of it only adds to the difficulty.

It's not just about having emotional support, it's all kinds of support, having job connections, people to help you pack your things to move, someone to give you a ride if your car breaks down, someone to help you if you get sick. Everyone needs help with practical things in life. If you are disabled, and/or depressed, those practical things alone can stack up fast and become really overwhelming. It makes it that much harder to deal with an emotional hit, like a death in the family, or losing a friendship. It all just keeps adding up. So it feels like there's nothing to look forward to, except more of the same, or worse.


Yeah, this is definitely a big part of the problem. Though, I've noticed a lot of folks on this site don't even think to care about this issue (having friends or "socializing" is seen to only be for "hanging out" or group leisure, or whatever, instead of having a support network or functioning as a member of society), which probably sets them up for having bigger problems with it down the road.

But, even though I have a lot of advantages in the social department, I still struggle....


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20 Sep 2015, 1:48 am

I feel highly vulnerable due to my isolation and inability to make friendships outside my family. This is enough to make me very depressed when I think about what might happen in the years to come. It wouldn't be so bad if I felt I could be self-sufficent or reliant but I have a lot of trouble with basic day to day tasks like cooking, cleaning, shopping, washing clothes etc. I feel like looking after myself will be a full-time job in itself without all the added stresses of work. In my situation I don't think it is unreasonable for me to be depressed and anxious about the future. My biggest worries are homelessness and hopelessness.

I see similar issues everyday on the forum. Our social difficulties are a huge and invisible disability. I think NTs find it very hard to understand how debilitating it is to feel dependent on a few people for support when you have such difficulties forming new relationships.



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20 Sep 2015, 1:56 am

Humanaut wrote:
Yes, as a first step I believe we need to stop holding ourselves to neurotypical standards.

Unfortunately, the NTs hold us to their standards.


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20 Sep 2015, 2:21 am

Cyllya1 wrote:
Though, I've noticed a lot of folks on this site don't even think to care about this issue (having friends or "socializing" is seen to only be for "hanging out" or group leisure, or whatever, instead of having a support network or functioning as a member of society), which probably sets them up for having bigger problems with it down the road.


That's a good point, and I hadn't thought about it that way. Probably because on the surface of things, it does seem like other people socialize just for fun. When in reality a lot of the time people have other things in mind, even if they genuinely like the person, they are still thinking about ways they can use that connection to their advantage. For instance making friends with new neighbors, and sizing up whether they will be able to ask them to watch the kids on short notice, or feed the pets while they are gone on vacation.

I've never been one to think ahead that way. It took me a long time to even realize that other people think that way...that there can be a complex series of negotiations happening in what looks like ordinary chit-chat between acquaintences.



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20 Sep 2015, 2:43 am

Crazyfool wrote:
**yes this is a double post from the media thread, because this needs to get out there**

No I'm not here to debate a cure by any means, but all the lurking I've done on these forums, I've come to the conclusion that an alarming amount of us seem to suffer a great deal. I for one, know I do a great amount.

I'm definitley not promoting any kind of cure and I don't wish to stir that pot either, but I feel something needs to be done whether it's therapy, medications, advocating, job place adjustments, societal adjustments....maybe a combination of all of these, I really do not know, but I feel something needs to be done.

I see too may people, young and old alike, talking about how suicide might be the most sensible means to end their pain. I can speak for myself here in saying that, I am truly burdened by my ASD, so much so that I think about checking out merely everyday.

There are cancer patients that live with dire pain everyday of their lives but still find pushing through it worth it to see another day, and the fact that some of us here suffer so much emotionally that they seem to think another day doesn't hold that same value.....It breaks my heart and all I want to see is this pain and suffering brought down to a manageable level.

Most of us here are completely verbal, hold average or even above average IQ's, but even with those assets in mind, many struggle to find fulfillment and happiness in life. Genevieve Edmonds, a well known advocate and author publishing books related to autism, had sadly decided to end her own life. I've done my research and there seems to be a trend among aspies and suicide that isn't being taken seriously enough.

What does will it take? How many more cries for help and posts of teen's and adults posting their plans to eventually die by their own hand, before we can finally do something about it.

Don't get me wrong, I am clueless as to what needs to be done but I'm consumed by the thought that something needs to be done and done quickly.

Any suggestions? What can we do as a community or better yet as a society to help people on the spectrum live more fulfilling lives? There's gotta be something or someone that can help....


It's a pink-glasses outlook, do you really think you can improve just one aspect of society while the rest (in the same time) is going to s**t, same old, same old, like in politics, you're asked to only care about your own situation,
divide et impera



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20 Sep 2015, 2:56 am

corroonb wrote:
It wouldn't be so bad if I felt I could be self-sufficent or reliant but I have a lot of trouble with basic day to day tasks like cooking, cleaning, shopping, washing clothes etc. I feel like looking after myself will be a full-time job in itself without all the added stresses of work.


I have trouble with this too. Not that I don't know how to do those things, or can't do them, but I just can't keep up with getting it all done on a regular basis. I don't understand how other people can do so many things in one day.

I don't think human beings are supposed to be this self-reliant...people used to share homes with multiple generations of family members. They shared and divided up the tasks. I hate feeling like I have to do everything by myself. Not just the amount of stuff that has to be done, but the loneliness of it and the feeling that it's not worth it if it's only for me.