Autistic Burnout

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I went through burnout from 20-22, and am still in "recovery" at this time.

I agree with Zen; people need to understand that just because we have done something in the past, doesn't mean that we can do it now.

Burnout has affected all areas of my life, including areas where I once excelled. For example, I was the academic superstar growing up. I did extremely well in high school and college. Recently, I decided to start easing my way back into school. I am taking a single class that meets twice a week and sometimes I feel overwhelmed by the amount of reading/studying that I must do. But five years ago, I was taking 6 AP classes that met every single day! There's absolutely no way I would be able to do that now.

It's very hard trying to explain the whole "facade" thing to people, especially since I wasn't even completely aware that I was putting up a front all those years. I have only known about AS for approximately 2 years, so I always assumed that I was dealing with things the same way other people did.

I too don't really know what my real personality is. It's all about keen observation and designing the proper response for whatever situation I am in. I feel like whenever I put a "personal" spin on things, or try to add a little something unique, that is carefully planned out as well.

Regarding anxiety, I have something really weird going on with that.

Basically, all my life, I had this intense driven adrenaline-type feeling. Well not "all" my life necessarily. Let's say... starting when I was more incarnate, around 4-7. (I mean, when I actually had at least some degree of experiential connection to my body.) Ever since then, it's like I've had this force behind me and within me driving me forward (even after crashes and the like), coupled with huge degrees of anxiety and stress to the point I was so used to them I wasn't aware how severe they sometimes were. And when actual stressful events happened... yeek. Like when reporters started visiting my apartment, for the first week or two I could barely eat or sleep I was so terrified. My normal stress level was high enough but with that stuff going on, it was unreal. All of this showed up as an incredibly high reading on the galvanic skin response thingies that they were using at MIT to help autistic people become aware of our stress levels. I had one of the most extreme readings.

Then a couple(?) years ago my body suddenly gave out on me. It was very quick. One day I was more or less walking around (although for the first week or two before it really happened, I wasn't looking or feeling quite right), the next day I was flat on my back and struggling to retain any muscle energy long enough to actually use them. (I don't know all the technical stuff behind that, but my body was responding as if I was a weightlifter going way too far over my limit, except I wasn't lifting weights, I was just doing normal stuff.) And when that happened, that driven feeling vanished. My galvanic skin response became barely detectable. My idea of "extreme stress" now is just the palest imitation of what normal used to be for me. It wouldn't have even registered as stress back when I was like that. I have a hard time retaining anxiety as well. Not that I'm complaining exactly. It's just weird how I went from that constant driven state my whole life, to nearly nothing, just from some random neurological/motor/muscular problem. So even when I'm really really stressed out now, it's barely anything really, and anxiety is more a mental feeling than a physical one.

The person I talked to from MIT told me that there's actually two kinds of stress/anxiety, one of which registers on their machines and one of which doesn't, and they just are unfortunate to share the same name in English because they're quite different in a lot of ways. And I can totally attest to that from an experiential standpoint. Whatever I'm calling stress/anxiety now is nothing like what I used to deal with. I'm really calm most of the time.

FWIW, I've been in the process of burning out for about two or three years now. Then I found out about Aspergers/HFA and recently received a confirming DX. So I'm in the middle of a crash and burn that nobody actually knows about because you don't tell your coworkers or boss that you really just want to run screaming from the building. And now I'm seeing how my attempts at adapting to my work environment (and life in general) were nothing more than futile efforts to force a peg into a wrong shaped hole.

I really don't know wtf to do next. Other than "carry on", that is. If I carry on in this manner much longer, my head's going to spontaneously explode.

anbuend,

That's interesting about the stress/anxiety.

My anxiety has been much much worse in the past (daily panic attacks, non-stop panic attacks) but is now much more occasional and more likely to be triggered by things that are actually likely to happen - and the unlikely stuff is easier for me to ignore. The one exception is anxiety about whether I'm autistic or not, but that only happens once or twice a week. The anxiety is still the same (adrenaline, tension, etc) just the frequency is way down and much less intense.

wavefreak58,

Ugh, sympathies. That sounds to me like a hellish situation. I hope you're able to work something out.

It's taken me a long time to understand this about myself.



Yeah, I find it cognitively exhausting to do relatively few things, compared to how active I've been in the past. Like, going to 3-4 social events in a week (all related to my interest at the time)? Doing one in a month is really almost too much for me. And I mean I was able to manage working five days a week plus 2-3 social occasions per week until at one point I was just exhausted all the time despite getting enough sleep, and finally just crashed. And after every crash it's just difficult to get back to the same level of activity. Lately, I find it difficult to get a lot of things done, so in practice what I do tends to push me up against limits that I have been told can't possibly exist (because I am able-bodied, despite my neurological difficulties).



Facades are another thing I haven't even mentioned to my therapist. I don't know how to talk to anyone about them. One of the writers in Women From Another Planet? talked about bringing up her personas to NTs and getting some really negative reactions, and I find I just skirt around the issue as much as possible to avoid that kind of reaction. Never mind the "I don't know what my real personality is." I'm glad people here know what I'm talking about with that - it doesn't bother me much, but I had no idea how common it was.

I think the reason Autistic people are more likely to burnout has a physiological element of common sense. A person that cannot maintain homeostasis, eventually suffers health consequences both physical and mental. Some are robust, and hold out into old age. Others succumb at a very young age.

I watched people at work cruising through life with what seemed like little effort. I considered them to be lazy and unconcerned, but I clearly understand now, that I was the one that was over concerned and not able to relax. Every social interaction required 100% of my attention to get it right. I burnout at 21, recovered with youth and had a horrible one at age 47. It is much harder to rebuild and recover with an aging body.

I think the burnout that most Autistic people experience is mental and physical burnout. Psychological burnout can be different than physical burnout because it may not lead to all of the physical issues that are common with physical exhaustion.

My burnout started at age 45 and ended up in complete collapse at age 47. My coworkers thought I was the same as usual; but my body was going through literal hell from not being able to relax. I often wished a could run screaming from the building, but I felt like I had no option.

I think one thing that may be different about an autistic person going through burnout, is we may have learned a social facade that can be carried into periods when we are horribly stressed. Observing others through my career, most are not able to disguise this kind of distress, and they often do not receive the same demands that the hardworking dedicated worker with hidden distress receives. It was hard for me to establish boundries and I could have said no more often, but my opinion of life was be accepted or die.

It may be a harsh statement, but from my experience, I see a level of truth to it, particularly in the workplace. It is not that much different from the sociological mechanisms that are at work in the school yard sport of Dodge Ball.

If your stress is bad enough it could ultimately cause an early demise. I didn't understand how bad my stress was because my energy level was high until collapse. According to sleye's theory of human exhaustion, it is common to feel this way further into the stages of human exhaustion before collapse. I suggest you seek assistance from your doctors, and if necessary take a leave of abscence, if that is an option for you. If you feel like your head is going to explode, your body may be giving you fair warning.

Leaving work and accepting the fact that there was something wrong with me was against my nature after a life spent doing my best to fit in; this is much of the reason why I stayed longer than I should have. School and Work, the structure, routine, and stress kept me motivated all my life for productivity. I needed that stress to move forward; it kept my mind focused. Unfortunately, the ultimate consequence of it for me, I believe, was inevitable.

Vernandi's source is the only one I could find that gives much information on this topic as it relates to Autism. The research may be sketchy because an Autistic Diagnosis in midlife is uncommon. The midlife burnout may precipitate a diagnosis for many.

I'm not sure that the physiological process of burnout is different from what NT's experience in todays high stress world. Sensory issues are hard to measure, but for me, were a major issue with burnout. This may be what separates Autistic Burnout from NT Burnout, but I don't know how it can be measured beyond self reports.

I think we experience stress over many things in life that others take for granted, so it is likely that we would experience the mental and physical effects of stress more than some others.

The only solution I can see for anyone with autism to avoid burnout is to manage stress the best you can, choose your battles wisely when you can, and hope for the best, knowing that your life may ultimately depend on it.

I really like your post and I think it has a ton of great advice, I just wanted to pull this out because this paragraph describes something similar what was going on with me before and during my burnout. I never showed any signs until it became too much. I kept up the facade despite the fact that I was not holding up underneath it at all.

I feel like my facade put a lot of demands on me and amplified demands from others, and simply made everything worse. And I kept this up well past the point of burnout. No wonder I had no energy to cope with anything else, I was spending it all on hiding obvious signs of my problems despite the fact I couldn't manage any part of my life on my own.

I wish I'd paid more attention to how much sense "spoon theory" made to me the first time I read it.

All of your comments resonate.

I feel a nearly overwhelming urge to unplug and simplify. But I can't afford to lose my health insurance or house, both of which would happen if I took a leave of absence. I think I need to hang on for another year or two. I think I can manage it, but some days it seems like 730 days = infinity

"Miles to go, Little Miss Muffet. Counting down from 7-3-0."

I wish I had paid more attention to the warning signs throughout my body that I tolerated as well. I kept on telling myself they would go away when the most stressful things in my environment went away. I was largely unaware of my body most of my life; it was screaming stop and I refused to listen. I had no idea that I was losing the mental and physical capability to keep up a social facade. It was what I had done all my life and was the only normal I knew.

At the time I was so overwhelmed with panic attacks and somatic symptoms I'm not sure if there were any physical symptoms. I know in the years since I managed to develop an interesting collection of noteworthy (that is, not typical wear and tear) pains.

I was fortunate enough to have accumulated a year of sick leave to carry me through the disability process. I had enough money in the bank to avoid losing my house, but my wife also has a disability and I could not afford the possibility of losing my health care. With a government job I was getting close to retirement with the opportunity for lifetime health coverage, not something that I could easily let go of.

I am very disheartened by those in our country that are against the current efforts to extend health coverage. The thought that a person could have guaranteed coverage could make the difference in life, death, or financial ruin for so many people. And for those that consider it a free ride, because they are working so hard, they may be the ones that ultimately benefit the most.

In my own case I might have been able to move into a healthier work environment with the option of purchasing affordable health insurance. I might still be a productive member of society. I don't think a modern society can afford not to provide the opportunity for health insurance to it's citizens. I am personally confident we are moving in a positive direction on this issue.

Reading this makes it seem oddly fortunate I burned out so young. By the time I was working age, I not only had no ability to even pretend to myself I'd be able to work, but I had so much documentation of failed work experience even in special-ed-based and similar heavily-assisted employment settings that I got SSI on my first try. Which, while I'd much much rather be working if I could, seems preferable to trying to explain autistic burnout to the SSA at the age of 50 or something and ending up homeless.

Fortunately, they work on symptoms, impairments, and the like, although you still need to have diagnoses and records of said diagnoses + treatment to demonstrate they're real.

What is particularly frustrating is being technically eligible for SSDI based on parental social security payments (because of being disabled before 22) but not having any documentation to prove it. I'm hoping school records will be of use for this, but not having been allowed to have practically any treatment as as child or adolescent means that there aren't any medical records beyond check ups, injuries, and so on.

I have no idea how burnout would go over. Since I'm not even sure about bringing it up with anyone as an explicit thing, it may be irrelevant, bureaucratically speaking.

A diagnosis of dysautonomia, fibromyalgia, and sjogren's syndrome and a letter from a Rheumatologist stating that I was permamently disabled meant nothing to the Civil Service government disability retirement process. Neither did a letter from an opthamologist stating that I could only look at a computer screen for periods of five minutes at a time. Nor a letter from a psychiatrist indicating the Autism Diagnosis. The only acceptable diagnosis was depression. Not likely that I would have been depressed without all of the other issues, but that was the only reason it was approved.

SSDI considered the combination of these together along with my age and I was approved on the first try with no legal support. One hundred pages of documentation five minutes at a time is the effort that was required. If I didn't have a wife, that needed the support, I don't think I would have been able to complete the process. Probably the biggest reason I am still alive.

None of this would have been possible without good health insurance coverage.

The hardest part for me was saying the words that there is something wrong with me after pretending to be normal for 47 years.

The worst part for me is starting from ground zero since I have a hard time realizing I should ask for help, let alone actually doing it, and not having much documentation at all for treatment of anything that would be seen as disabling. The fact that I have practically no work history, have failed to manage simple things like bills and paperwork, and so on, seems indicative to me.