Burnout.
24 Oct 2010 9 Comments
in Asperger's, autism, burnout Tags: Asperger's, authenticity, autism, burnout, expectations
Burnout. This is a piece about my own burnout. I am writing in the hope that anyone struggling with burnout may find something here that may be helpful.
I remember, many years ago, reading a sidebar in Scientific American. I don’t remember the main article but the sidebar stuck in my mind. It was about a study of stress in monkeys. The experimental group was stressed by loud sound and the control group had no stress. At the end of six or twelve weeks (I’m not sure of the exact time, but it was short) the stressed monkeys were all found to have lesions in their brains but the controls had normal brains. In short, stress actually caused brain damage. (But do take heart, recent research into neuroplasticity has revealed that our brains are very good at building new circuits around the damage).
I heard a piece on the radio the other day about an author who was writing a book about his research into an actual gruesome murder. He would work on it until midnight. Then he would feel that he needed a shower or some way to disinfect himself. His wife finally told him that he needed to take a break from the book. She could sense the toll that dealing with the horrible facts day-after-day was having on him.
I once worked for ten years as a social worker in child protection. I would usually wake up at three in the morning thinking about my clients’ situations. My wife wondered how I could exist with only three hours sleep a day. The fact is that I couldn’t, as we eventually found out. My family physician sent me to several specialists over several years trying to find out why I was getting progressively weaker to the point that I did not know if I would make it all the way to my car, without collapsing, while carrying some milk from the supermarket. I was also having progressive, profound memory and cognitive difficulties. It got to the point where I had to take written notes when discussing a case with my supervisor, and then reread my notes before going into a clients home, and then take glances at the notes during my interview to make sure I covered everything. And I used to be one of the top investigative workers in the agency! Over time, as I gradually went more and more down hill, my doctor finally, in 1993, diagnosed Chronic Fatigue Syndrome (or Myalgic Encephalomyelitis as it is known in Commonwealth countries).
Then she sent me to someone who specialized in CFS/ME. He was reluctant to confirm the diagnosis because he was picking up strong signs of burnout. So he sat on the fence for a year, and I carried both diagnoses. Then after a year, he said that I should have recovered from burnout by then so he settled on CFS/ME. The Long Term Disability Insurance I had at work tried everything to rehabilitate me but to no avail. They considered me “totally disabled” which meant that I was unable to work at any occupation. I collected LTD benefits for seventeen years until I reached retirement age last January. I say that just to give you an idea of how severe the disability was (insurance companies don’t like paying out benefits!).
Since joining the Autism Spectrum blogging community, I am seeing CFS/ME as probably a misdiagnosis. My doctor’s original hunch about burnout was probably correct. But hardly anyone had heard about Asperger’s back then. Profound Mid-life Autistic Burnout is what I believe I experienced.
My clients would tell me that I wasn’t like their other workers. They said I cared about them. One mother, whose children had been placed in care, told me I was too sensitive for this line of work. They were seeing the highly charged empathic response of Aspies/auties. Our overactive brains take in too much, and process it so thoroughly, in such a highly charged manner, that I believe we risk burn out. Especially when day-to-day work involves exposure to so many tragedies.
Caution: the next paragraph contains a description of an abused child.
I have memories, of things I saw, and disclosures I heard, that are still vivid after all these years. I can still picture the back of a little three-year old girl. Her babysitter called us because the girl’s back was crisscrossed like lattice-work by raised red welts from her mother’s belt. I can see that little girl in my mind today as clearly as I saw her in real life 25 years ago. I will carry her memory to my grave. And that’s not to mention all the disclosures of physical, emotional and sexual abuse.
There was also the extreme stress of attempting to function in the neurotypical work world. In the course of investigating child abuse I interviewed children, perpetrators and parents. I participated in case conferences at the agency and at hospitals. There were staff meetings and visits to foster homes. I often testified in court. I was on the union negotiating team.
But I was also known as “the invisible worker” by some of my colleagues because, at lunch, I retreated to my office to recoup and recharge, rather than socializing in the staff room.
I had great difficulties getting my paper work done. When I should have been writing a report I would find myself just sitting there at my desk while in my mind I was off in some fantasy world much more to my liking. (but on rereading this, I ask myself who wouldn’t want to escape the world of child abuse? but I still struggle with getting things done because I really like my fantasy world!)
Little did I know that my differences, which I tried so hard to cover up and overcome, were actually signs of autism/Asperger’s which I should have been celebrating. Had I known then what I have just recently learned from the autism spectrum blogging community, perhaps I might have been able to accept my differences, and live accordingly, instead of trying so hard to behave like a neurotypical. I am not sure how I would have earned the income needed to support my homeschooling wife and four kids, but perhaps something creative would have occurred to me. There was so much needless stress caused by attempting to be what I was not. My attempts virtually always fell short of my expectations, which in itself increased my stress. And the price I paid was high.
A professional suggested once that people like me, whom he diagnosed as Socially Phobic, belong in backroom research laboratories and computer labs. Before moving to the country I worked as a data analyst on a research project. We had a four or five person team meeting for two hours on Tuesday mornings to update each other, and outside of that meeting I never had to talk with anybody! The rest of the week I worked at home and in the computer lab analysing data. My wife helped me with the data entry, which reduced my workload and hours. I did talk to her, but I liked that. It was the best suited job I have ever had!
So if you struggle with burnout, please be careful. Be gentle and kind to yourself. Keep your eyes open for a creative solution that honours your own true beautiful makeup.
(Edit Nov. 20/2010: I originally wrote this because a blogging friend seemed to be going through a burnout, but it turned out to be a different medical problem so I modified the post accordingly).
Nov 11, 2010 @ 21:49:34
Sorry to hear about the burnout. It seems much more common than it seems be talked about. Someone ought to do some research/studies on that.
For me, although it did in a way feel like burnout, it also felt (figuratively) like flat-out brain damage. I do wonder if there is a particular neurological thing happening, beyond the normal “burnout.” It’s been 20 years since the first memory glitches, and 10 years of being on disability, and my faculties are not significantly better. I lost the ability do things like read books (after reading page 2, can’t remember page 1), write computer code, do math/physics (grad school), electronics, and so forth. And just generalized confusion and slower processing of everything.
I’ve heard some people connecting this burnout phenomena to autistic ‘regression,’ but I don’t know enough at this point to understand how/if they’re the same thing.
Nov 11, 2010 @ 22:51:03
Hello makoto/pome,
Thanks for your comment.
These links might be helpful:
http://www.journeyswithautism.com/2009/06/29/why-i-cant-do-what-i-used-to-do/
http://www.autistics.org/library/more-autistic.html#burnout
When I was first diagnosed with CFS and burnout, I read an article by a physician who was brain damaged due to head trauma. I really felt she was describing my own difficulties with memory and cognition. So the end result may be similar. My physician told me that CFS is a brain disorder.
Now that I see that I am probably on the autism spectrum (Asperger’s) I wonder if the diagnosis should have been Mid-life Autistic Burnout instead of CFS.
I presume, since you are “on disability,” that you have had a complete medical workup to rule out any treatable causes of your symptoms. If not that may be worth doing. I wish you well in your search for understanding.
Nov 11, 2010 @ 23:28:03
Hello again makoto/pome,
Sorry to hear of your difficulties.
I meant to mention that in my reply but I got sidetracked — memory/cognition problems?
When I was first diagnosed in 1993 there was a joke going around the CFS community that said: people with CFS only need to own one book, because every time we pick it up it seems like a brand new book!
I could sure relate to that. We used to call it “brain fog”. I still get that, especially if I have done too much.
Nov 12, 2010 @ 01:29:50
Hi again, born 2be me. Thanks for the note.
It’s interesting the similar turns your path seems to have taken. I was dx’ed with CFS in around ’95. I remember another “brain fog” joke was, “you never seen the same movie twice …or sometimes even once, despite having watched it 10 times.” And, I ran across a across a book called “Over My Head,” by Claudia Osbourne (doctor w/a brain injury) in around 2000, which eventually lead me to get neuropsych testing (which showed short term memory and processing speed problems, among other things).
Not working has lowered my stress level tremendously, also, though my cognitive problems seem only a bit improved. I’ve had a lot of years to get used to it, at this point, though.
I’m just rambling here, but in a strange way I feel almost lucky that my health fell apart, since the internal stresses were always otherwise invisible, and things that people could never seem to understand. I.e. ‘faking it’: controlling ‘odd’ body movements, pushing to ‘hear faster,’ pushing to generate verbal responses faster, never show the fatigue or strain, never show the discomfort/stress of touch, eye contact, etc., etc.
Unfortunately, the psychologist who did my neuropsych testing had no knowledge of PDD’s (let alone in adults), so due to that and other reasons I have no official ASC diagnosis (just “cognitive disorder NOS”). But I’d run across Donna Williams’ books in ’94 (which rapidly lead me to get online), so I’ve luckily had knowledge about that for a long time, now.
What I wonder is if “autistic burnout” is really the same as “regular” burnout (albeit with an unusual cause)? Or, is there some unusual neurological change going on? I’ve heard the post-polio comparison as per Rachel’s blog, which is interesting, especially given the post-viral fatigue/”brain damage” model of CFS (post-polio overlapping with those). And also how or if “autistic regression” fits into the picture.
Anyway, just rambling. I’ve been thinking if I ever get organized enough maybe I could collect people’s burnout stories and… well, do something with them. I’m especially interested in the particular cognitive changes that people seem to experience.
Nov 12, 2010 @ 12:12:58
Hi makoto/pome, our stories are indeed similar. I can relate to all the internal stresses you list.
I am wondering if the doctor you read about is the same one I am thinking of: riding home from the hospital on her bicycle and struck by a car?
I discovered the online autism/Asperger’s community August 2010, so if you have been studying this area since 1994 you are way ahead of me!
My CFS was considered “gradual onset” as I became progressively more disabled over a period of years. But this could just as easily have been explained by some form of burnout. And it could be that a major burnout causes, or results from, some form of brain damage. So it all leaves my head spinning anyway.
Regardless of whether I have CFS or burnout, I do know that Asperger’s is the very best explanation for my rather unusual life from birth to the burnout/CFS diagnosis (and post diagnosis as well). So am I an Aspie who burned out, or an Aspie who got CFS, or an Aspie who has CFS and who also burned out??? The commonality is the Asperger’s. And so I am very grateful to have found this online Aspie/autie community because I have met so many people who have life experiences similar to mine, and the world now feels so much more like a place I can call “home”.
It would be interesting to collect and study people’s burnout stories. Would a larger than expected percentage be on the autism spectrum?
As to cognitive and memory problems, I do notice fluctuations. Stress/anxiety seem to cause a gridlock in my brain. So does too much physical exertion, such as walking too fast or too far.
Nov 14, 2010 @ 19:37:39
Hello again born2beme,
It’s does sound like the same book — hit while on a bicycle, and didn’t realize she had an injury until returning to work at the hospital the next day. And in the end she found she could still teach medicine, as long as it was rote material. And she went to some cognitive rehabilitation program in a busy city somewhere (New York, maybe?).
I also had a gradual onset with the CFS. I was thankful my doctors were accepting of that — I gather some only regard sudden onset as “the real thing.”
And yeah, running across autism/AS is quite a thing, especially after half (or more) of lifetime of unending mis-connections and weirdness, isn’t it? One thing that ‘got’ me about it was hearing people describe experiences I’d had that I’d never heard anyone talk about, ever (even in movies, books, and TV) — and almost feeling like they’d been invisibly following me around my whole life taking notes.
I actually stumbled onto a group of autistic people online in early 1994, slightly before the DSM-IV had come out (with Asperger’s in it). People were comparing notes and such, which was good as I found the professional literature (at the time, especially) really confusing and hard to relate to.
I only represent myself and don’t feel like an old-timer or anything, but anyway, welcome to the autistic community/communities!
Nov 15, 2010 @ 20:12:37
Thanks for the “welcome”, makoto / pome.
Yes, it sounds like the same book. I think she realized she had a problem when a resident told her she was sending an elderly patient to surgery without a chest x-ray. And I remember identifying with the brain fog she experienced trying to navigate in the city.
Good point you made about not “even in movies, books, and TV”. The whole culture was blind to my reality, so no matter where I turned I felt somehow “wrong”. Now I read about my life on blogs and wonder how they could know so much about me! I’m glad the isolation is over.
Jul 04, 2011 @ 06:38:58
Interesting, people! I am an (not yet officially diagnosed) aspie with (officially) diagnosed CFS/ME. I also had, i realize now, a ‘midlife autistic burnout’ some 14 years or so ago, when i was exiting a toxic relationship, and realising i needed to change my approach to life, cos what i’d done up till then hadn’t been working.
My CFS had a fairly sudden onset (ie a bad case of the flu), but a long lead up of stress and deteriorating capability to cope with it. But i’ve also had two major relapses since, which saw my health and energy levels plummet even further, to the point where i could barely walk, my legs would hardly support me (I used to call it the ‘cooked spaghetti legs’ feeling), i was barely one stage above bedridden. My brain was almost as non-functional as my body, i couldn’t read or study or concentrate at all. I largely went the ‘alternative’ way of healing, naturopaths, homeopaths, you name it, i went to them, took this potion and that, over the years i’ve refined it down to the supplements i find useful (B vitamin complex, magnesium, Vit A, spirulina), and oddly enough i have recently found that many autistics take at least some of these too, and find them helpful. Huh. I was doing the best for myself all along – taking things which various doctors and health professionals have tried to tell me i don’t need. I’m glad i ignored them!!
Jul 04, 2011 @ 21:11:34
It seems like we’ve had a lot of similar experiences. I’m glad you are no longer on the verge of being bedridden. I think I have improved since I was first diagnosed but I am not sure if I have simply learned to manage my energy better. I used to over extend myself and suffer a major crash that would last days or even weeks. My list of supplements includes 4x1000mg fish oil, Vit B complex, Vit D and C, and magnesium. I feel they are essential for me.