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playingvideogames
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10 Mar 2020, 10:58 pm

How Aspergers Can Be Deadly
By David


This is thoughts from my own life experiences as I have remained pretty much socially isolated most of my life nut I cannot believe that I am the only one who has been pretty isolated there whole lives. This didn’t scare me in fact I liked the part of me that never needed anyone though secretly I always wanted friends. Yet now as I get older and now as I am starting to deal with real heath problems I see how scary this really is when your isolated and completely on the outside. Because if I get seriously get hurt or need help to do things because I am no longer able to them I am in trouble because there is no one. I don’t have any friends or family that are there for me. I have no one. I know there is others like me which is why I writing this because even though aspergers itself is not deadly the social isolation it causes can be. Those who are like me who truly have hardcore social issues are trouble because life as a human is set up to want and need people. We cannot survive alone and those like me who cannot help being alone could die from this. We can die from being so socially cut off.
Also I have behavioral problems that make it hard if not impossible to see doctors and other professonals. So when I have gotten to real problems I almost cannot make it to see the doctor because of behavioral issues that arise when I become really anxious. Over my lifetime I have been kicked out of so many ERs when I needed help . I write this because I cannot be the only one like this and all these antisocial issues could kill a person. This is what I mean when I say aspergers can be deadly because of all the antisocial behavior some of us have can be very dangerous and very problematic for the times when people are almost required. I know this is not something I ever herd really talked about when talking about aspergers. But this is a very real side effect of having social problems. What do we do when we have no support system and no people when our health start failing? I personally don’t have any answer to that question I just know that this is where my life is at the moment and know other probably have been here before me as well those going threw it now.



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11 Mar 2020, 12:34 am

I am glad that you are here now and reaching out. Welcome to Wrong Planet.

You sound pretty broken at the moment and if you wish I can shift this thread to The Haven.

Sending you best wishes for better times ahead.



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11 Mar 2020, 3:03 am

I have similar problems, but less severe. Presumably, you do have some contact with people for employment, residence issues, etc. Perhaps one of them could help in other ways if asked. It might be possible to make pre-arrangements by polite letters so that you can just deal with one person, maybe waiting in the car yourself while they make arrangements, or just feeling content that they are expediting things better than you could. A hospital might be able to give you a special card to present, so they can respond appropriately when you are in distress. I have the phone number of a counsellor who knows me, and has credibility with other medical people.



TheHindsightMan
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11 Mar 2020, 3:36 am

You voiced my own fears better than I could ever had. I know I will die of something curable but overlooked and no one will care. Just like the people being found years after death in their own apartments. I am really bad at noticing that something is wrong with me. Some small pain starts and before I notice and decide if something is wrong it just becomes the new normal.

As for social isolation. I can understand why I may be off putting in real life but I cannot fathom what is so wrong with my online communication that makes me invisible. Sometimes I wonder if I even exist.



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11 Mar 2020, 3:37 am

playingvideogames wrote:
How Aspergers Can Be Deadly
By David


This is thoughts from my own life experiences as I have remained pretty much socially isolated most of my life nut I cannot believe that I am the only one who has been pretty isolated there whole lives. This didn’t scare me in fact I liked the part of me that never needed anyone though secretly I always wanted friends. Yet now as I get older and now as I am starting to deal with real heath problems I see how scary this really is when your isolated and completely on the outside. Because if I get seriously get hurt or need help to do things because I am no longer able to them I am in trouble because there is no one. I don’t have any friends or family that are there for me. I have no one. I know there is others like me which is why I writing this because even though aspergers itself is not deadly the social isolation it causes can be. Those who are like me who truly have hardcore social issues are trouble because life as a human is set up to want and need people. We cannot survive alone and those like me who cannot help being alone could die from this. We can die from being so socially cut off.

Yep. This is why we need to have friends -- and not just casual friends, but friends close enough to constitute an alternative extended family.

We, as a community, need to find ways for autistic people to find and make friends with compatible, autistic-friendly people, on our own terms.

Trying to blend in with NT's just doesn't cut it as a way for us to find real friends.


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JohnInWales
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11 Mar 2020, 3:51 am

Having got my diagnosis at 63, and only starting to discover I may be on the spectrum after various things happened in my life that resulted in me becoming almost totally isolated, I'm very aware of this, as I'm heading into the time of my life when this is almost certainly going to badly affect me. I still have my dog for company, but she can't organise the help I need, and is quite old so I'll be losing her in the next year or two. Then it seems like a choice between a slow, lonely and horrible decline, or finding a way to get out of this life quickly, both of which frighten me.



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11 Mar 2020, 3:54 am

What we need is to create a much better-developed autistic community than now exists. Then we'll be able to find friends among people who truly understand us, and with whom we can create alternative extended families.

Aspergers per se is not what's deadly. What is deadly is being Aspie/autistic in the absence of a sufficiently well-developed Aspie/autistic subculture that can help us build the genuine friendship networks we need.


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11 Mar 2020, 4:16 am

Welcome to wrong planet. I wish it were under better circumstances.

General Advice:
My advice to would be to take joy and pride in whatever you do achieve. These accomplishments might be dismissed as nothing much or routine by most people but I bet it took a humongous effort for you to achieve them but you did.

Specific Advice:
If you have a specific problem such as a health issue where you need help and have been unable to get it post about it and ask for help here. No guarantees but it is likely that some member here has dealt with it and figured out something.


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11 Mar 2020, 8:01 am

At least we can console ourselves that most murders and suicides arise from social interaction.



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11 Mar 2020, 8:59 am

I was isolated for a long, but not because I wanted it that way. My lack of a driver's license held me back from going out and doing things I wanted to do. For the last five years, I have been very active.



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11 Mar 2020, 9:38 am

I have often wondered how someone without any family or friends who are more isolated or who are nonverbal can navigate the medical or legal systems. Not everyone has a social worker. In these cases, I have found a few cheap tools on Amazon that could be beneficial. There are seat belt covers that say "Autistic: May not respond to verbal commands, may refuse assistance, may run away." There are also window decals that state the same thing, for both adults and children. There are also QR code stickers you can apply to your smart watch, your helmets, your ID card or wallet, or really anywhere, that has your medical information on it so you can get the treatment you need without worrying about social ques. There are also medical bracelets that say autism on it or just have an opening where you can stuff information in it. Amazon has the QR code medical information ID cards as well as one specific to autism. The Aspie World has an informational autism card to hand people (doctors, lawyers, cops, ER nurses, etc) if you need help but need them to know how to respond to your needs adequately and without judgement. I hope this helps.


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11 Mar 2020, 9:52 am

MyNameisNic wrote:
I have often wondered how someone without any family or friends who are more isolated or who are nonverbal can navigate the medical or legal systems. Not everyone has a social worker. In these cases, I have found a few cheap tools on Amazon that could be beneficial. There are seat belt covers that say "Autistic: May not respond to verbal commands, may refuse assistance, may run away." There are also window decals that state the same thing, for both adults and children. There are also QR code stickers you can apply to your smart watch, your helmets, your ID card or wallet, or really anywhere, that has your medical information on it so you can get the treatment you need without worrying about social ques. There are also medical bracelets that say autism on it or just have an opening where you can stuff information in it. Amazon has the QR code medical information ID cards as well as one specific to autism. The Aspie World has an informational autism card to hand people (doctors, lawyers, cops, ER nurses, etc) if you need help but need them to know how to respond to your needs adequately and without judgement. I hope this helps.


Unfortunately, the one thing that Amazon does not list is a 5-minute break for the unlucky cyborg who has to pack my order. If I wouldn't accept a job, I won't hire anyone else to do it.



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11 Mar 2020, 10:10 am

I understand the difficulties. I am fairly "HF" and very social (in an ASD way), but still feel disconnected and have had so many misunderstandings with authority and medical staff. I assume, that like mine, your behavioral issues worsen with stress. I went recently to talk to the local police during an outreach program and they encouraged me to bring my ASD-like daughter to visit the station from time to time so she (and I) is more familiar to reduce stress during an incident that little bit. If you could find a regular stress-reduced way to visit the medical care facilities (volunteer to shelve gifts? visiting pet?) then maybe that would help --- at least you'd be more familiar with the facilities and the cashiers would know you and that community "knowing" could spread or be useful during more high-stress times. My unmarried, childless ASD-like BFF is very aware of her situation relative to aging and is purposefully maintaining relationships with her nephews and nieces (and me) and has a "buddy" who is in a similar situation. She has an aunt who is a role model. It seems "calculating" for folks like us (b/c it's intellectual), but as you said, it can be beneficial.

@MyNameisNic, great tips!! !! ! I could really have used some of those (that is EXACTLY what happens! and I appear super HFA without stress so it's really a switch when the stress hits). I saw a car decal with a hand that says "Hypersensitive" --- I'm leaning towards handing out a card... I'll take a look at the Aspie World one. Thank you!

David, thank you for posting on this very important topic. I wish you well as you navigate your health issues and increase your social exposure as much as possible. Hugs.



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11 Mar 2020, 3:40 pm

I considered suicide in 2012, but didn't follow through because I knew that would really hurt people who loved me. I didn't see much of a reason for living after my mother died, but a friend of the family showed me that life was worth living.



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11 Mar 2020, 5:11 pm

A psychologist diagnosed me with Asperger's when I was 21

Right now I am 37 years old

"If you can't beat them, join them. Or live outside it all. Creatures that live outside it all don't last long"


But 37 is pretty old

40 is :evil: age discrimination :evil: at work


:mrgreen: 35 is :ninja: geriatric pregnancy :skull:



Yes I only have a couple of precious lil "friends" and nobody that I can depend on


Sooner or later I will :evil: need help :evil:


Financially broke, clinically depressed, medically, legally, whatever


Sooner or later everyone needs :evil: help :twisted: but I am particularly especially vulnerable s**t




:mrgreen:


Having said that "can", "should" and "will" are all different things s**t


Anything "can" be deadly



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11 Mar 2020, 5:29 pm

David, you asked: What do we do when we have no support system and no people when our health start failing?

I will turn 73 this year, live alone, and have had chronic health conditions and a weak immune system all my life, and spasmodic episodes of serious unforeseen life-threatening illnesses in later years. I have survived a number of major bouts of surgery and very severe pneumonias. So I have quite a lot of what might be termed "how to survive" life experience.

I have had to learn to make the health system listen to me and take me seriously. On one occasion the ignorance of a junior doctor came very close to killing me. He was later admonished (in front of me) by a consultant at the hospital and forced to apologise. He was also informed that he had come very close to causing my death. It was my refusal to leave the hospital when he told me there was nothing wrong, and my action (after spending six hours ignored completely by medical staff while in serious respiratory difficulty with a temp of 105 F) in seizing the skirt of a passing cleaner when I could not longer breathe enough to form words to ask for emergency help and refusing to let go until she promised to get a doctor immediately that saved my life. She ran and got a senior doctor who rushed me to ICU immediately and they went to work on me to try and stop the advanced pneumonia in both lungs. Fortunately they succeeded in saving my life. I was a parent of dependent children and their sole breadwinner at that time.

It was a terrible, but important lesson to learn. We have to be our own advocates. I know that is hard for many reasons. And it does not get easier over time.

We have to prepare how we will do this before we become ill.

We have a thread in the Women's forum about "Barriers to Healthcare". It is orientated toward women's needs primarily though you may find some useful information there. You will certainly find supportive members responding if you wish to post there.