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aghogday
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23 Apr 2013, 6:41 am

Kjas wrote:
Thank you both!

I'm now interested in that tokens picture and going to go hunting for it. :lol:


I'm pretty sure that means you already see the link in this thread, but just in case you didn't see it here is the link to the tokens picture again. :)

https://www.facebook.com/photo.php?fbid ... =1&theater


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opal
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23 Apr 2013, 7:01 am

What is this tokens thing?!?!?

I can relate to a lot of what has been said in this thread so thank you so much to everyone who has posted.
I find it very sad that even to people (eg family members )that I have disclosed my AS to, they do not apreciate the enormous energy drain that people like us experience over a long period of time just trying to appear remotely normal: and that the additional pressure placed on us by mental health "profffesionals" and/or family members makes things exponentially worse.

O sorry, I see the tokens thing. A friend with crohns once explained this on facebook in term of spoons I will see if I can find the link.

http://www.butyoudontlooksick.com/wpres ... on-theory/

Here it is. I related to this so well, but as Aspergers isnt seen as a "real" disability, I didn't feel good to share this with her, especially in a public forum.



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23 Apr 2013, 7:17 am

I am surprised I had apparently missed this thread in the past, but here is something I had found at about the same time this thread began:

Quote:
“Most people have a level to which they are capable of functioning without burnout, a level to which they are capable of functioning for emergency purposes only, and a level to which they simply cannot function. In autistic people in current societies, that first level is much narrower. Simply functioning at a minimally acceptable level to non-autistic people or for survival can push us into the zone that in a non-autistic person would be reserved for emergencies. Prolonged functioning in emergency mode can result in loss of skills and burnout.”

Until my diagnosis, I’d been functioning at emergency level for 50 years. Amazing, isn’t it? I should get a plaque, or a trophy, or maybe even a write-up in the local paper. Can you see the headline?

LOCAL AUTISTIC WOMAN BURNS OUT AFTER 50 YEARS OF EMERGENCY FUNCTIONING
“So THAT’s why she’s so quiet,” says neighbor.

...

“The danger here may be obvious: It may be the people most capable of passing for normal, the most obvious 'success stories' in the eyes of non-autistic people (some of whom became so adept at passing that they were never considered autistic in the first place), who are the most likely to burn out the hardest and suddenly need to either act in very conspicuously autistic ways or die.”

Given all the plates I’ve kept spinning in my lifelong quest to be neuro-typical, having a simple choice between 1) being conspicuously autistic or 2) dying—well, it’s one hell of a relief, let me tell you. I’ll take the conspicuously autistic woman behind door number 1, please. Why has no one told me about her before? She’s quite wonderful!

http://www.journeyswithautism.com/2009/ ... sed-to-do/


A little over two years ago, I ended up in an ICU for three days with an IV and whatever meds after my blood pressure had been uncontrollable for several months and I could no longer function at all. No doctor or even I at that time understood what was going on, but life as I had been having to live it had finally exacted its toll. I will never again be able to do things at any pace even close to that of the past, and I now know it would be foolish to even try. But now that I receive full-disability SSDI and no longer have to fight against my own limitations in order to try to survive, my depression and anxiety have diminished greatly and I even look forward to getting out of bed the next morning.


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MusicalWonders
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23 Apr 2013, 8:59 am

Hmm. I was progressing really well during high school, I was excelling and seemed pretty smart and could handle social situations decently but now, I've been out of high school for about 2 years and I'm a complete wreck. Can't think coherently or express myself much. Is this what autistic burnout is? I looked it up and that's kind of what I got but am not sure, so.



leejosepho
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23 Apr 2013, 9:52 am

MusicalWonders wrote:
...out of high school for about 2 years and I'm a complete wreck. Can't think coherently or express myself much. Is this what autistic burnout is? I looked it up and that's kind of what I got but am not sure, so.

I would guess what you are experiencing is more a matter of no longer having the comfort or regularity of the order and structure you had long known in a school setting. I graduated High School in 1968, and I remember "feeling lost" and not knowing what to do with myself the very next year. In fact, and many years later, I often had dreams of being "stuck" back in High School (and in drudgery) even while actually being glad to be back amidst its definite and predictable order and structure.

For myself, and as a mechanic, I describe my "autistic burnout" as my being like an old truck that still runs but can no longer carry even the lightest load without stalling out (and/or melting down) completely. So, I would say the challenge for you is to find your new role in life beyond High School and to spend your energies wisely and prudently while carefully valuing and even rationing your internal resources along your way in life...and I hope that makes some sense...


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dunya
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23 Apr 2013, 10:05 am

I can relate to this. I managed to work in a variety of customer facing roles and survived, but the stress was too high. I didn't do well on social interactions with workmates.
After the company I worked for went bust I struggled to find permanent work. Despite being described as a "hard worker" and "having aptitude" I didn't get kept on in subsequent jobs.

I feel like I show AS traits more now than a few years ago. I don't have the energy or the inclination any more to pretend. I have suffered depression and I think that is part of the "burnout" experience.

Before I'd work through pain, tiredness and stress because I thought that everyone did to the same extent. But they still had the energy to go out in the evenings, to socialise, to connect with their peers in a constructive way.

Now I need to find a better, more self-sustaining environment. To take care of myself by getting right the balance between doing my best and doing too much.



MusicalWonders
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23 Apr 2013, 1:59 pm

leejosepho wrote:
MusicalWonders wrote:
...out of high school for about 2 years and I'm a complete wreck. Can't think coherently or express myself much. Is this what autistic burnout is? I looked it up and that's kind of what I got but am not sure, so.

I would guess what you are experiencing is more a matter of no longer having the comfort or regularity of the order and structure you had long known in a school setting. I graduated High School in 1968, and I remember "feeling lost" and not knowing what to do with myself the very next year. In fact, and many years later, I often had dreams of being "stuck" back in High School (and in drudgery) even while actually being glad to be back amidst its definite and predictable order and structure.

For myself, and as a mechanic, I describe my "autistic burnout" as my being like an old truck that still runs but can no longer carry even the lightest load without stalling out (and/or melting down) completely. So, I would say the challenge for you is to find your new role in life beyond High School and to spend your energies wisely and prudently while carefully valuing and even rationing your internal resources along your way in life...and I hope that makes some sense...


Makes sense, I was a mess before graduation and it felt like my life was ending, when only apart of it had. I'd always have dreams for about a year that it wasn't true and that high school would last forever but I've come to face reality. All my friends are meeting new people and going to College and it kills me inside. I hardly ever see another human being, other than family in real life, so I really do need to move on. My neurologist wants me to take an English class this summer, so that'll probably help me get my life back on track but I'm very frightened because I've been in special ed for over 10 years and they want to stick me with NTs. I've been abused by NTs in the past and I'm very scared..



Kjas
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23 Apr 2013, 5:21 pm

opal wrote:
What is this tokens thing?!?!?

I can relate to a lot of what has been said in this thread so thank you so much to everyone who has posted.
I find it very sad that even to people (eg family members )that I have disclosed my AS to, they do not apreciate the enormous energy drain that people like us experience over a long period of time just trying to appear remotely normal: and that the additional pressure placed on us by mental health "profffesionals" and/or family members makes things exponentially worse.

O sorry, I see the tokens thing. A friend with crohns once explained this on facebook in term of spoons I will see if I can find the link.

http://www.butyoudontlooksick.com/wpres ... on-theory/

Here it is. I related to this so well, but as Aspergers isnt seen as a "real" disability, I didn't feel good to share this with her, especially in a public forum.


God that link is scarily accurate for what it's like to live with an autoimmune disease. 8O


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muff
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23 Apr 2013, 9:46 pm

aghogday wrote:
muff wrote:
how does one get tokens back? i need tokens.


Karla's slide provides a well illustrated description of the math of tokens, and how to pace oneself to keep an adequate supply of tokens; however, the process of getting the tokens back is a physiological and psychological one.

The psychological part can vary from one person to the next and is hard enough for me to understand for myself; however, the physiological issues as that applies to what Hans Sleyes describes as General Adaptation Syndrome, linked earlier, is the calming of the stress response that can return one back to what is described as homeostasis or what one might describe as a battery more fully charged.

I think part of that answer lies in what some describe as R&R, or Rest and Recovery/Recuperation, but I would add another R of healthful Re-"Creation".

What makes the recreation "real" healthful Re-Creation is whatever it is one can find balance and joy in. There is no limit to what that might be, but if one is low on tokens because one has exhausted the stress response, any adrenaline producing activity, even what one might view as a positive one can lead to further loss of what can be described as tokens or spoons.

I often used vigorous exercise to relieve my stress and return to homeostasis, but found out decades later that there were human limits to that healthful routine of what I considered Re-creation too.


thank you for your thoughtful response. i am lucky to be able to begin working on this in autism therapy soon.

it is comforting that this is making sense. i always used to tell people (friends, girlfriends) that i needed to 'recharge my batteries'. this theory explains very well what ive always meant by that statement.



aghogday
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23 Apr 2013, 10:06 pm

muff wrote:
aghogday wrote:
muff wrote:
how does one get tokens back? i need tokens.


Karla's slide provides a well illustrated description of the math of tokens, and how to pace oneself to keep an adequate supply of tokens; however, the process of getting the tokens back is a physiological and psychological one.

The psychological part can vary from one person to the next and is hard enough for me to understand for myself; however, the physiological issues as that applies to what Hans Sleyes describes as General Adaptation Syndrome, linked earlier, is the calming of the stress response that can return one back to what is described as homeostasis or what one might describe as a battery more fully charged.

I think part of that answer lies in what some describe as R&R, or Rest and Recovery/Recuperation, but I would add another R of healthful Re-"Creation".

What makes the recreation "real" healthful Re-Creation is whatever it is one can find balance and joy in. There is no limit to what that might be, but if one is low on tokens because one has exhausted the stress response, any adrenaline producing activity, even what one might view as a positive one can lead to further loss of what can be described as tokens or spoons.

I often used vigorous exercise to relieve my stress and return to homeostasis, but found out decades later that there were human limits to that healthful routine of what I considered Re-creation too.


thank you for your thoughtful response. i am lucky to be able to begin working on this in autism therapy soon.

it is comforting that this is making sense. i always used to tell people (friends, girlfriends) that i needed to 'recharge my batteries'. this theory explains very well what ive always meant by that statement.


You're welcome, I'm glad it was helpful. :)


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23 Apr 2013, 10:10 pm

Tokens in action:

On Monday morning, before I went to bed, I had to:

* Schedule my paratransit ride to therapy on Wednesday
* Phone in my prescriptions for refill (no voice communication needed)

The Paratransit site doesn't use autofill and requires Internet Explorer, so that takes some of my reserves to deal with (remembering all the data to input every single time).

The prescriptions require going through multiple verbally explained menus, and inputting redundant information over and over, so that took some of my reserves.

I usually do not have to do these on the same day, but when I need to, I usually fail to do both because dealing with both systems is too much for one day.



bigdavid
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03 May 2013, 1:40 pm

I had my first burnout back in '99. I was working in manufacturing 50-60 hours a week. I did pretty well at the very repetitive job that I had, but then I was transferred to a much harder job that entailed much less linear thinking. This was because I had done so well at the previous job. I shortly became very ill and when I returned to the job I found that I just could not do it anymore. I quit in less than 2 weeks.
I returned to manufacturing about 4 months later to a job that I had prior. I had been a printer by trade. This I tried to do for 13 years and I always struggled to keep up. I could mostly do it, at the expense of my family. Generally, all I could do in the evening was try to recuperate for the next day. I finally quit 1 year ago this past February. Last fall I found that I was most likely Autistic. I have been slowly letting go of my facade since I quit my last job. I am lucky because my wife owns her business and I went to work for her. I am becoming happier with myself as time goes. The stress of trying to fit became overwhelming, until I simply crashed. Today, my small circle of friends (most of whom I know through my wife) seem to accept me for me.



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03 May 2013, 2:03 pm

I'm pretty burnt out. :(



daydreamer84
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03 May 2013, 2:14 pm

MusicalWonders wrote:
leejosepho wrote:
MusicalWonders wrote:
...out of high school for about 2 years and I'm a complete wreck. Can't think coherently or express myself much. Is this what autistic burnout is? I looked it up and that's kind of what I got but am not sure, so.

I would guess what you are experiencing is more a matter of no longer having the comfort or regularity of the order and structure you had long known in a school setting. I graduated High School in 1968, and I remember "feeling lost" and not knowing what to do with myself the very next year. In fact, and many years later, I often had dreams of being "stuck" back in High School (and in drudgery) even while actually being glad to be back amidst its definite and predictable order and structure.

For myself, and as a mechanic, I describe my "autistic burnout" as my being like an old truck that still runs but can no longer carry even the lightest load without stalling out (and/or melting down) completely. So, I would say the challenge for you is to find your new role in life beyond High School and to spend your energies wisely and prudently while carefully valuing and even rationing your internal resources along your way in life...and I hope that makes some sense...


Makes sense, I was a mess before graduation and it felt like my life was ending, when only apart of it had. I'd always have dreams for about a year that it wasn't true and that high school would last forever but I've come to face reality. All my friends are meeting new people and going to College and it kills me inside. I hardly ever see another human being, other than family in real life, so I really do need to move on. My neurologist wants me to take an English class this summer, so that'll probably help me get my life back on track but I'm very frightened because I've been in special ed for over 10 years and they want to stick me with NTs. I've been abused by NTs in the past and I'm very scared..


I had the most severe episode of depression I've ever had in my life after graduating from high school.



Kezziness
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03 May 2013, 5:37 pm

anbuend wrote:
When I started dropping that sort of façade, a lot of people became angry with me. In my case it wasn't even fully on purpose, I just didn't have the kind of energy and momentum it takes to keep up an act. Mind you, my act wasn't very convincing in the first place, but it still made enough of a difference that people noticed and got pissed off when I dropped it. It's like some people think autistic people have no right to look more autistic, even if it's torture and hell (and even impossible) to do otherwise.


^^ that is exactly what is happening to me in my life right now. I no longer have the energy to keep the facade up. To keep pretending to be normal. It's too hard. Most of my family is accepting. They are having trouble adjusting though. I think they keep hoping that I will get better and be less autistic. As for me I have finally accepted myself. I have finally felt ready to change my name to Âû on Facebook. I had to go through a grieving process first. Similar to the one that Karla went through that she talks about on one of her slides on her Karla's ASD page. I have come out the other side much happier and finally at peace with myself ♥



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07 Feb 2014, 7:18 pm

This thread is amazing. Thank you to everyone who posted. For those of you who had commented in the very beginning a couple of years ago: how are you doing now? I hope you all have managed to get through this okay.

I'm finding myself on the brink of a burnout right now. I've been struggling, STRUGGLING to finish my thesis for my master's degree, and I have been working part time (which is an easy 1 day/week), plus taking care of my 18 month old during the day. I can take care of her and provide for her needs just fine, but the executive function I have for myself is nearly nonexistent. My husband is very understanding and has been taking care of the household chores and cooking dinner and going grocery shopping when he gets home. By the end of the day I am completely drained though. I collapse into bed and can't think straight, yet my mind runs a million miles a minute.

I feel as though I've hit a wall and that wall is about to swallow me whole unless I figure out how to back away from it. The weird thing is that all I want to do is hyperfocus on the things I find interesting, and that's about the only thing in my life I have seemingly limitless energy for. I have this overwhelming need to just be alone to read or write or paint (all things that recharge me), but I can't do that for more than an afternoon maybe once a week at a time, and it's not enough. I feel like I instinctively know what to do in order to heal, but the time and things necessary for doing that just aren't feasible in my life right now.

Like what many have said in the previous comments, I have begun to drop the NT facade and be my more "natural autistic" self and that has helped a little. At least the energy that was being spent on doing that is now freed up to allow me to care for my daughter and even the most basic needs for myself. This whole burnout has been building up since at least August, (though I suspect it's been looming for the past two years, but I've been able to keep it at bay until now) and around September something just kind of snapped in me and I found that I just couldn't keep up the act of normal anymore. I had been working on a project for an online magazine (which I thought would aid me in starting my career, but it ended up being a bust) and the girl who ran it kept piling on more and more (despite telling her I didn't have enough time to do it all) and I just stopped caring. I would get on my computer, try to work, and my mind would just go blank. So, I quit. My husband and sister say it's not my fault and that that girl was demanding too much and taking advantage of my time (which is true, as a few other people quit around the same time) but I still feel like it was a failure.

Anyway, so when that all happened, I just kind of threw my hands up and stopped with worrying about being "normal." I don't have the energy to do so anymore, so why bother? I have grown apart from one of my best friends because of this, which has hurt, but my other best friend has been very understanding, as has most of my family.

My dad has autism, but he doesn't really understand me and I can't really talk to him about this. I feel incredibly alone in this, and I feel like no one in my life understands what a struggle it is just to get through the day. Also, as previous comments mentioned, this is definitely different from depression. (Though I realize that these can coincide and/or lead to one another, I'm sure.) I have interest in things, and I love being alive for the most part... I just have hit a wall and I feel as though I could sleep for a thousand years.