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firemonkey
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23 May 2020, 6:23 am

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Background: Although autistic adults often discuss experiencing “autistic burnout” and attribute serious negative outcomes to it, the concept is almost completely absent from the academic and clinical literature.

Methods: We used a community-based participatory research approach to conduct a thematic analysis of 19 interviews and 19 public Internet sources to understand and characterize autistic burnout. Interview participants were autistic adults who identified as having been professionally diagnosed with an autism spectrum condition. We conducted a thematic analysis, using a hybrid inductive–deductive approach, at semantic and latent levels, through a critical paradigm. We addressed trustworthiness through multiple coders, peer debriefing, and examination of contradictions.

Results: Autistic adults described the primary characteristics of autistic burnout as chronic exhaustion, loss of skills, and reduced tolerance to stimulus. They described burnout as happening because of life stressors that added to the cumulative load they experienced, and barriers to support that created an inability to obtain relief from the load. These pressures caused expectations to outweigh abilities resulting in autistic burnout. Autistic adults described negative impacts on their health, capacity for independent living, and quality of life, including suicidal behavior. They also discussed a lack of empathy from neurotypical people and described acceptance and social support, time off/reduced expectations, and doing things in an autistic way/unmasking as associated in their experiences with recovery from autistic burnout.

Conclusions: Autistic burnout appears to be a phenomenon distinct from occupational burnout or clinical depression. Better understanding autistic burnout could lead to ways to recognize, relieve, or prevent it, including highlighting the potential dangers of teaching autistic people to mask or camouflage their autistic traits, and including burnout education in suicide prevention programs. These findings highlight the need to reduce discrimination and stigma related to autism and disability.


https://www.liebertpub.com/doi/10.1089/aut.2019.0079



magz
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23 May 2020, 6:52 am

I'm glad they're starting to look at it.


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Mountain Goat
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23 May 2020, 7:19 am

All I know is that it is a "Thing" as I have had it, and it takes ages to get over. The last time I had one was in september and I am still not 100%. I am on the mend though as I have been out on the bicycle. Something I was not able to do a few months ago. Before the last few burnouts I was on the bike daily. My muscles need building up again as I have hardly been able to cycle in the last few years. Ok, it does not help that I have steep climb to get back home. During and just after the burnout I would hardly be able to walk that far. It really hit me in a physical and a mental way.


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firemonkey
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23 May 2020, 7:38 am

I can't remember ever having a 'burnout' . I guess the closest was depersonalising/derealising when my late wife developed vascular dementia .

I have the feeling that the higher you try to climb based on societal expectations the greater the chance of falling . I've never tried to climb very high . Live a somewhat basic lifestyle .



magz
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23 May 2020, 8:13 am

firemonkey wrote:
I have the feeling that the higher you try to climb based on societal expectations the greater the chance of falling . I've never tried to climb very high . Live a somewhat basic lifestyle .

I'm pretty much the opposite... and yes, burnout is the taste of my everyday life.


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Mountain Goat
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23 May 2020, 8:16 am

While burnout itself can happen at any level, one thing I did notice was that when going through burnout, de-stressing and ridding oneself of commitments be they work or promises requiring one to do things (Like fix a bike) was the priority. Example, I sold my house at half its value to pay off the mortgage just so I did not have the stress of the mortgage and other bills, and I survived for a while just on the few thousand I had left over so I did not have to work.
Prior to this I had slowly worked my way up in jobs for about 20 years to end up in a full time well paid job, but when I hit my first burnout, I quit the job, and basically quit life! Mind you, there was so much going on in those days. Not my fault. Many family and friends died (We went to 43 funerals). Lots went on with so many people needing help.
But anyway. All I remember was I was giving away or selling all I could in posessions to both survive and to rid myself of responsibilities. I sold my classic car for £650 (They sell for £11k today. I paid a good few thousand for it), I sold the camper for a low price as well (I think about £400?) It was a case that I could not cope with the responsibilities of owning them. I gave away my Volvo T5 and Mercades estate to gypsies as they wanted them and I had no monry to pay for insurance or to do the little jobs needing for their mot.

Basically anything of value I saw as a responsibility and I could not face the responsibility of owning them if they needed care and attention, as it would stress me in realizing I could not do this.

I did not know it was called burnout. I could not speak to a doctor about it as I did not know what to say and I was in no state to try to explain. I could not face signing on to look for work. I could not face work.

On the outside I looked ok. But inside I was a mess! People were criticizing me because I gave up work and sold my house. They criticized me because I could not do things to help my Mum. The criticized me for not going out to look for work. They would not believe me when I said I was not up to working. They refused to accept it (Even though prior to this they saw me helping etc. How come they forgot how much I used to do and called me lazy? Does someone suddenly become lazy if there is nothing wrong? Why could they not understand?)


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JimSpark
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23 May 2020, 9:57 am

firemonkey wrote:
Quote:
Abstract

Background: Although autistic adults often discuss experiencing “autistic burnout” and attribute serious negative outcomes to it, the concept is almost completely absent from the academic and clinical literature.

Methods: We used a community-based participatory research approach to conduct a thematic analysis of 19 interviews and 19 public Internet sources to understand and characterize autistic burnout. Interview participants were autistic adults who identified as having been professionally diagnosed with an autism spectrum condition. We conducted a thematic analysis, using a hybrid inductive–deductive approach, at semantic and latent levels, through a critical paradigm. We addressed trustworthiness through multiple coders, peer debriefing, and examination of contradictions.

Results: Autistic adults described the primary characteristics of autistic burnout as chronic exhaustion, loss of skills, and reduced tolerance to stimulus. They described burnout as happening because of life stressors that added to the cumulative load they experienced, and barriers to support that created an inability to obtain relief from the load. These pressures caused expectations to outweigh abilities resulting in autistic burnout. Autistic adults described negative impacts on their health, capacity for independent living, and quality of life, including suicidal behavior. They also discussed a lack of empathy from neurotypical people and described acceptance and social support, time off/reduced expectations, and doing things in an autistic way/unmasking as associated in their experiences with recovery from autistic burnout.

Conclusions: Autistic burnout appears to be a phenomenon distinct from occupational burnout or clinical depression. Better understanding autistic burnout could lead to ways to recognize, relieve, or prevent it, including highlighting the potential dangers of teaching autistic people to mask or camouflage their autistic traits, and including burnout education in suicide prevention programs. These findings highlight the need to reduce discrimination and stigma related to autism and disability.


https://www.liebertpub.com/doi/10.1089/aut.2019.0079


I particularly identify with the "loss of skills, and reduced tolerance to stimulus" part. It's as though there's a part of me I'll never get back because I can't put up with the stress I know I'd feel trying to get back to that higher skill level.


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IsabellaLinton
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23 May 2020, 10:20 am

firemonkey wrote:
Autistic adults described the primary characteristics of autistic burnout as chronic exhaustion, loss of skills, and reduced tolerance to stimulus. They described burnout as happening because of life stressors that added to the cumulative load they experienced, and barriers to support that created an inability to obtain relief from the load. These pressures caused expectations to outweigh abilities resulting in autistic burnout. Autistic adults described negative impacts on their health, capacity for independent living, and quality of life, including suicidal behavior. They also discussed a lack of empathy from neurotypical people and described acceptance and social support, time off/reduced expectations, and doing things in an autistic way/unmasking as associated in their experiences with recovery from autistic burnout.


This is a perfect description. I'll never recover, either. I've found a new normal but it will never the the same.


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Mountain Goat
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23 May 2020, 10:51 am

I also found that each burnout would hit me harder then the one before. I had reached the stage where when I hit the last burnout, I could not see that it was possible to face any further burnout without ending up physically dissabled as I was close to it and unable to walk that far with the last one. It was hard enough to drive as I would often forget how to change gear on the car! I would automatically put my foot on the clutch but then would get reverse or an undesired gear as my hand could not remember what it was doing (Or my mind could not tell my hand what to do?)
I still get moments while I walk where I am half not fully in control of my leg and wondering if it will hold my weight or not, and I sometimes find that while carrying things like a cup, I need to use two hands because I can loose the ability to maintain a grip on the cup and my hand relaxes ans opens. (I use my other hand underneath so at least if I relax my grip it does not mean I have tipped the drink or worse still, dropped the cup! I find that when carrying other things, I have dropped things while I forget to grip them. I say forget... It is not that I don't remember that I am carrying them. It is more that without me intending to, my grasp has let go. I need to manually put effort in to grasp things at full tightness to compensate).


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Jakki
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23 May 2020, 11:22 am

this is a very good group of descriptions of realities that autistics deal with describing burn out.
At this later point in life can almost precisely identify with almost all of these descriptions .

This entire thread SHOULD be documented in that silly book called the DSM ,whatever edition that actually existed ever . . Have had to attempt to mask my way through these situations repeated time after time year after year. Never realising the ongoing connections . Especially after coming to this site With kind giving peoples of the this Wrong Planet .


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