Hi Functioning Aspies with a Breakdown in Mid Adulthood?

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oh yep - at 21 i chucked in my high paying stressful job (and my diet of class A drugs that made normality easier) and ran away to live in the bush for 10 years

Living in a bus way out in the bush (a full hour walk for anyone thinking they might visit me) with no power and only nature to deal with was wonderful - i'd only see humies about once a week - no stress and lots of exercise - what ya like when ya like kinda style

at 32 the land i lived on was sold from under me and i once again found myself living in snivelisation - several meltdowns followed in quick succession including waking up most mornings with my bed completely trashed like i'd had a knife fight with it in my sleep - bits of pillow and mattress all over the place... Or screaming myself awake because the neighbour had started the lawnmower or car in their driveway and it HURT!

At 33 i'd decided i really really NEEDED to make enough money to by a large piece of land to live on to keep the neighbours away - i rented a small cottage on a farm and started and successfully ran an online gadget shop for 3 years - and did a bit of web design on the side. The money got better but the stress levels didnt - dealing with customers all day and accounts all night soon overloaded me again and at 37 I sold the business and invested the money i'd made in the cheapest piece of land i could find - but with no intention of living on it...

Also during that time I'd agreed to move in with my friend (now my partner) provided we could live on a farm - we rented a farmhouse and I stepped up the web design income a bit...

Last year (41yo) we sold my wee section and used the money as a deposit our own small farmlet (but big enough that i cant hear the neighbours thank goodness) but now i have the stress of paying the mortgage and its starting to get to me...

Each 'setback' seems to be harder to recover from - my memory is going, my executive skills are almost becoming non-existent and the web customers are harder and harder to deal with - lately i feel like i'm floating about in dreamland - i'm unsure what i should be doing or even what i want to be doing, the accounts are slipping and i've had a great time offending some good customers lately I have very little focus, energy or enthusiasm left.

I wonder if my half thyroid (the medical profession took out the other half 3 years ago) is struggling but i'm too frightened to go to the doctors to see (every time i go there they want to chop off some bit of me) or if i'm developing alzheimers (sp?) or if i've simply worn out the brain and it will never recover?

Yep - i'm struggling - and i'm scared too - does old age start at 42?

Point me at the time machine - i want to go back 20 years!! !

exactly. And people who do believe in adrenal fatigue do believe it has to do with the adrenals. I quoted one webdoc but his opinion represents most actual scientific approaches.

Adrenal fatigue was not originally something that was supposed to refer to breakdowns (and I don't consider my "breakdowns" as primarily emotional, my emotions at the start had to do with opinions I'd been taught about the world, not with the process of losing skills) that happen to autistic people after functioning more than we ought to. It's a term that one autistic person whose opinions were steeped in dubious medical ideas applied to it.

The fact that we all have similar stories doesn't mean that the adrenal cause attributed to those stories is true. Although that's a very common mistake that I've noticed with dubious medical causes for genuine phenomena. Sort of a fallacy of some kind. For instance (for a now outdated hypothesis about autism) "What do you mean early childhood trauma doesn't cause autism? So many autistic people lose skills in early childhood!" The existence of common experiences is mistaken for the reality of a purported cause for those experiences. And adrenal fatigue has nothing to do with our shared experiences here just because one woman wrote it in a book.

that's weird, I was thinking exactly that metaphor today. I am not saying it is always easy for NT people but jesus crap my life has been like I fell off a boat out in the ocean sometime in the mid-eighties and I am getting tossed around by the waves and I keep waiting for it to get better and it never does and this has been going on for over 20 effing years and I am just freaking exhausted already, do I let go and drown? I watch those real housewives shows at work sometimes and think there should be a death penalty for whining in cases like that. Those are problems? You can sit in a million dollar house you never even lifted a finger to help buy and whine? (another day, another rant, I guess). Go through a winter or two without heat like I have and then get back to me on that, is what I want to tell those folks. But even so I have never been hungry, so I am grateful for that, when my grandmother was alive she would always feed me, I lived with her like three or four times. I just don't know what to think about this anymore, I really don't. I think I have had two serious breakdowns, one at about 19 and then this whole last year, and lots of mini-breakdowns along the way.

I seem to be the opposite. I seem to be getting better skills. I'm nowhere as near successful as many people here.
Although I did seem to breakdown from all the stress of being a band photographer and continuing it after being diagnosed with AS. Were my years as a band photographer my most successful years? Oh God, I hope not.

This is such an interesting thread! There have been many anecdotes of 'middle aged burnout' here, I didn't realise it had been written about. Unfortunately, cynical skeptic that I am, while the problem may have been recorded, I believe we still search for a solution. Diet and relaxation are OK, but the real answer seems to be to get off this crazy hamster wheel we're all on, that is going faster and faster every year. As long as dependents need feeding and clothing, bills need paying and property speculators demand money from us for the 'privilege' of a small plot of living space on planet earth, I see no way off just yet.



I've never really understood why before, but when I got to about 17 or 18, I was just so absolutely *tired* of living. Not at all in the suicidal sense, but literally *tired*, with no energy for life. Looking back it was as if I needed a few years off being under the constant attention, gaze and expectations of others! And this at an age when careers, colleges, and the start of adult social life are beckoning. Of course I never got that space, and just drifted on through it completely lacking the energy my peers had. From what you say here and the rest of these posts on 'burnout', it throws an interesting light on something I'd had questions about, but no answers for.


When I was diagnosed, 4 years ago, the last thing the psychiatrist said was "you realise that at your age, there's nothing that can be done about it". Well, something needs to be done about it!! !! I now realise the thing I need is *resources*, which is the thing that they will not provide. No amount of therapy and medication will substitute for what I really need - which is a world that is prepared to acknowledge *my* needs and to stop keep forcing me to engage with it absolutely on their terms.

My dream would be access to a safe place where I could be free of the burden of others expectations, where physical needs are catered for without having to get mental and emotional burnout. This side of the grave, and until "Aspie Island" becomes a reality, a remote Himalayan monastery is about the only place I can imagine as being suitable.


Overall, I've found meditation to be a help. But it isn't so cut and dried, as when you truly seek to 'know thyself' - there is no guarantee your day-to-day ego self will like what it finds!

Diet is difficult because can anybody agree what is an 'excellent' diet for each individual? Aspies are known to have more dietary issues than average. So. like everything else in AS world, you best throw away the guidebooks as your on your own with this.


Technically, neither is a "nervous breakdown". It's a term commonly used by the general public, but I don't think there is no medical condition of that name.

That's a shame about Adrenal fatigue as it seemed to fit me.


I think that's a good, helpful way of looking at it. We can do no more than what we can. I've also found that I'm happiest when I ignore those cultural status symbols and follow my own path. The problem is that I forget all too easily. Perhaps because I can pass as 'approximately normal' in some ways (and with serious effort) , I tend to start looking at the others and wanting what they have and beating myself up for not having it. The key thing is the physical and mental *cost* of being "approximately normal", which is paid for in the health problems this thread is about. And TBH, 'approximately normal' doesn't appear anywhere near enough to get the rewards and avoid the problems. Although I also believe that to think everyone else is "settling down with partners and careers they find fulfilling" is really not true. Plenty of NT's are struggling in our current society too. I guess we are the ones at the 'bleeding edge' that are most sensitive to the changes in the world, but every year, others are being dragged in too.


Also on that planet, people earn wealth by 'doing real work', not by unethical and Magickal financial dealings.


I did something similar in my mid-20's. Lived in a Tipi community for a few months. It was nice, but I still struggled with the 'community' side of things! I guess the other people were easier to get along with than the typical social-status seeking drones. But I was so shy, withdrawn and completely lacking energy, of course, that I didn't grasp the opportunity and, like you, ended up back in 'civilisation'.


My plan has also been to save up and get that piece of land where I can live as I like. I can understand about the stress of the mortgage, it seems the way the world is going, all of this is just getting harder and harder. With more and more people yet no more land...eventually something will break.

Property prices are crazy in the UK. Many people work just to buy their house and that's about it. I know several people who have either gone to New Zealand or are planning to go there as they believe NZ has a far brighter future than the UK!

An Aspie community would be a *very* interesting thing to try. It seems in many cases, we are scattered all over the place, unable to get support from our locality. In my small experience of real contact with other Aspies, and the occasional person I've known who probably had traits, I have found interaction with them far less stressful than in the usual social situations.

I should note that I am still gaining skills, they are just not the ones that are important to certain people. And people exist who believe that the height if my life was attending college early, but I refuse to share my life with such people because they tend to be superficial elitist jerks who never wanted to know me as I was, just as a set of skills.

The skills I have gained or am gaining since that period:

I am more able to communicate my own thoughts as opposed to just recombining the words of others into plausible (but usually false) sets of sentences. I know exactly who I am and who I am not, because I no longer am running my brain at speeds I can't keep up with. I am a better writer, although I still come at it through a variant of recombined echolalia (it just serves me now instead of me serving it). I am less selfish and more ethical. The best skills I had now or then (generally ones involving looking at the world directly underneath a lot of brain-generated BS) are completely blossoming because the skills others valued were actually impeding them or making sure that I could not communicate or make use of what I perceived. There is no name for a lot of those skills but I know what they are.

I am also happier, calmer, and stronger. I don't mean physically stronger. I mean it is easier for me to handle problems ranging from discomfort to true adversity. And with each passing year, or even month, it is harder for bullies to affect my mind or my mood. Because I am more aware that not only can't they change me, they can't even perceive me in any meaningful way and their malice affects them more than it affects me. I am less afraid of pain or death as well for similar reasons. My nearly lifelong depression lifted several years ago. And it's much as a good friend predicted ten years ago, that my journey to hell and back has made me more resilient than the people who created that hell can either cope with or imagine.

The things I've lost are much less important than most of the things I've gained. But to a lot of people they are both more obvious and more important. Some of them are the result of the fact that certain cognitive and cognitive-motor skills were stretched to the breaking point and some are because my body and genes were built a certain way. And sone probably a mix of both.

I can do next to nothing on demand -- not my demand nor anyone else's. Which means my writing can't be turned into a job because I write when writing is triggered and the more I try to shape it the more it falls apart. This is also true of movement, thought, and memory. Most of my academic skills are shot. The two most consistent job skills I had aren't possible -- sitting in an office doing simple sorting type tasks, and doing repetitive physical work (not only do I have two neurological-motor conditions but my joints are messed up, a doctor recently politely described my neck as "not perfect", and I have little stamina). By little stamina I mean I've been worse, but the kind of stamina I have is well below the threshold that most people would call "no stamina". I also lack intellectual-abstraction stamina, but I was referring to physical. I can't walk anymore. Any speech that pops up occasionally isn't communicative. I use (and absolutely need) a motorized wheelchair to get around, and a communication device to talk. My IQ has dropped nearly 80 points between the ages of 5 (when I was labeled gifted) and 22, and had already dropped out of the "gifted" range by 15. Can't do ADLs without help or IADLs at all. And a lot more that I tend to forget.

I don't want to scare anyone -- I know others who have had this level of burnout but usually it happened somewhere between the ages of 10 and 35 if it happened at all (and for me parts were sudden and other parts were incredibly slow but with periods of more sudden dropoff). Most of the ones who use wheelchairs were diagnosed with the same movement disorder I have which usually starts getting worse in adolescence.

But I also know it took me about a year in the autistic community before someone saw me freezing in place and took me aside and told me to show a paper on that movement disorder to my doctor. So if anyone has that experience I'm putting it out there.

But I did want to explain after seeing that last post that I don't think I was at my most successful before this happened. I may have been considered my most successful by very superficial people, as well as the sort of autism statistic collectors who measure success based on certain superficial criteria, though. I really hate that because it's all part of the same ableist system that tells you that success means certain specific achievements and pretending your impairments are as mild as possible (which is the same thing that either outwardly or inwardly drives people to achieve those things until they drop).

Don't have time to read the whole thread atm but this is what i'm trying to avoid at the moment. I can see it coming but don't know what to cut to prevent it or if i have the bravery. willpower or whatever it is it takes to actually do it.

It's like I have an infected foot, do i cut off my foot or my whole leg? If i do nothing will i be lucky and heal? Will i be able to live a decent life with one leg?
I kinda think i need to cut off my leg, but knowing it still leaves me a lot of decision making short of actually doing it.

Yes. This sounds very much like what happened to me. I was moving along fine, very capable of managing my life and my responsibilities, excelling in many areas and relatively well balanced. A few unexpected blows caused trauma to my nervous system and knocked me off kilter. I am working diligently now, to regain my equilibrium and I am optimistic that I will succeed.

This thread actually provides a good reason why Aspies should NOT work if they can help it. Anecdotally, burnout or breakdown is actually commonly reported by adult Aspies on WP. The stress of dealing with a complex work environment can only go on for so long before some additional stressor tips the balance over. Not to mention that dealing with the effects of autism is in fact a very time consuming thing. Work may mask the effects of meltdowns or other undefined aches and pains by pushing the Aspie to not focus on the dysfunction, but that will only hasten the eventual collapse as the problems are not dealt with.

If the choice is between poverty with happiness and wealth with a likely breakdown, what should you choose?

I lucked out here - by the time my second big burnout happened, I was with a lady who understood, and has helped me leave the workforce with a little more grace than last time. At the moment, I'm privileged to pull down a (minuscule) income as official caregiver for my daughter (paid by the US Army, as her mother married our good friend, my cohusband, in part because of love and in part because as a soldier, he could provide health coverage). This is fortunate, as I don't think I can muster the energy to work out in the world any more - most days, it's all I can do to face people at the store. Thank Turing for self-checkout!

The first one left me living with my first wife and stepson in the woods in Washington, until we were flooded out by a major Pineapple Express storm in the winter of '90...

I see that some of the adults here have managed to get SSDI for their disability. Is it difficult (more so than with most disorders, anyway)? Do I need to find someone willing to give me an official diagnosis first, or will the SSA arrange for diagnosis?

Very few among us can survive without working (for money) even if we embrace a "no frills" lifestyle. Perhaps for a single person, without a family depending on you for their well-being, it would be easy to opt out of the grueling 9-5 and live the life of a poor but happy recluse. Not to mention, that many on the spectrum actually love their work and the non-material rewards it brings. Working for 9 years in a large health care organization certainly, over time, led me to the brink, but fortunately, not over it. And of course, during that time, I was unaware of being on the spectrum or even that there was such a thing. If I had known, I would have made better choices, or at least understood what situations and stressors to avoid or creatively maneuver myself around. As it was, my acute attention to detail turned out to be my Achilles heel. My adherence to rules and regulations. along with my expectations that everyone else was as ardent at following them as I was, turned out to be the shocking proof of my naivete and gullibility when the scales finally dropped from my eyes, At that point, when I realized the "system" was sick, if not insane, I got out quick, with fists banging on the conference table and spit flying from my mouth. It was my first experience with understanding the term "meltdown" although I had numerous mini-meltdowns in the preceding years but was unaware that they were actual red flags. I still grieve over all the work I did for that organization and the love that I had for that work and for that organization and for my co-workers. An unrequited love to be sure.

My point: work is a good thing for everybody, on the spectrum and off, for all levels of functioning and all neurological types. Education and support in the workplace is lacking and that's what makes it such hell. As it stands, ignorance rules. That's what needs to be fixed, not me, not you. Until it's fixed, people are going to breakdown and fall off the edge.

Last edited by cosmiccat on 22 Mar 2010, 12:22 pm, edited 1 time in total.

Yeah, I've broken down and I'm not even in the workforce yet. It was a real breakdown, too, not just teenage stuff. I was nuts, I thought I could suddenly invent friends using my own mental powers, and spent a lot of time alone in my room mumbling to myself, among other things.

I'm scared to think what's going to happen when I start working. Though, it might be better for me depending on the job I get. Like, if I did something quiet and menial then I'd be fine, maybe an office job or something. But the stress of doing things like completing projects within a certain time line might be too much for me. I guess we'll see.

Don't make the mistake of thinking that work is the cause of breakdowns. It often isn't. Sometimes it can be a refuge. Other times it can be a non-issue. With the right sort of work it can be a great benefit. I know at least one Aspie whose work helps her avoid a chaotic home environment, and without which she would be much more stressed out. And if your work is in your special-interest area, then you simply mightn't be happy without it.

I don't think that the solution, for the majority of autistic people, is not to work. It's to find work in an environment where we are not forced to use the skills we have acquired with such difficulty and use with such great effort, but rather allowed to use the skills that come naturally to us. Many times, with undiagnosed and unsupported people working menial jobs that are called "easy" by NTs but are grueling to the autistic, it's no wonder burnout happens. Peripheral things can cause burnout too, like lunch or office politics or the daily commute. Put me at a cash register, and I burn out in a month... put me behind a computer screen or a lab bench, and I forget it's supposed to be "work".

The sad thing is that many of these jobs that come easily to many of us require some kind of piece of paper to prove to NT employers that we can do them, and school requires yet another set of skills that you may or may not be good at. I currently am going to school to prove that I can do those jobs behind the computer screen or the lab bench; but school is at the edges of what I'm good at, and it's very taxing despite my receiving what is probably an intensive level of support, comparatively, from my college's disability services office. My chief hope right now is that I can get out of school before it gets too bad (or perhaps get into graduate school, which I'm told is better).

I suspect whether we can work is pretty individual. As someone who was considered quite bright but knew I had no way to sustain cognition-intensive paid employment, I was setting my sights on the jobs that the work preparation programs I was inas a teen had set me up for -- either something repetitive like stocking shelves, or more like the heavier outdoor work I had done on a ranch for minimum wage. Wasn't what some might have expected but I knew my skills in those areas were more reliable.

I got a trial job stocking shelves and found it was way too complicated for my brain to sort out:

"The shelf is full"
"Pull some out"
"Which?"
"Any"
(grab)
"Not THOSE!! !"

All the other instructions relied on similar judgement calls I wasn't able to make. I lasted a few weeks I think.

Lots of places flat wouldn't hire me even though they were in my neighborhood, had known me for years as a customer, etc. Or maybe because of that, now that I think of it.

So my only successful work experience was doing assorted physical stuff on a ranch.

Then by the time I was working age my physical stamina fell out from under me, and between that and an even more limited cognitive stamina I also found that it took all day to manage just one part of daily living, let alone work.

This was really hard for me to accept because I used to pride myself on being the only one in my group home out there working despite the heat and the neuroleptics and my body not always answering me right. Probably not the best thing to pride yourself on but in general I was always happiest when people said I was a hard worker. Because it proved I wasn't lazy. I still struggle with trying to prove something to myself like that, although friends have helped me see how destructive this is to me and to others.

Anyway my mom took me to my SSI interview. And then I went home and cried because what they do (and it's on purpose, been this way since the Poor Laws) is they really degrade you and drag you through your every weakness and shortcoming. They know some people won't come back for more and they count on making sure only desparate people go through with it.

I got it though. On my first try. Despite being warned that most people have to go back and appeal. I got SSI rather than SSDI because I hadn't worked enough.

I wouldn't exactly recommend SSI to anyone who didn't really need it. But if you do need it it can save your life. I don't know how getting it after an extensive work history goes though. I have several friends being slowly burned out by their jobs who really fear that. "What? You can't work because you're autistic? But you've always been autistic and you worked before. Why not now?"Actually nearly all my employed autistic friends fear this.

The reason I can be happy this way isn't because poverty is wonderful. It's because I could be happy pretty much wherever I need to be. Sometimes losing every single one of your expectations in a row until you just quit expecting, will do that to you. You sort of learn that life happens independently of what you might want. I actually do a tiny bit of work but it's volunteer and by tiny I mean it doesn't even qualify as part time. I do it whenever I can which is almost never.

So for me even a part time job would be too much. There's just too many pieces of what my body refuses to do, or do on command, or do consistently, etc. My most obviously productive activity is writing but I can't plan something out and then write it, and I can't decide to write and watch words come out. I write because the writing writes me, not because I decide to. Otherwise I'd have written loads of books by now, I have lots of ideas but my brain works by waiting for a pattern to carry me somewhere and that has only become more extreme with time.

In an ideal society my manner of contributing would be as valued as the ability to do the jobs that exist now, and nobody would be considered lesser for not being able to do those things. (In fact those kinds of jobs might not even stand out as a concept, the way they do here, because there would be so many more kinds.) But right now I live in a society where someone like me either gets SSI, lives off of other people in any of a wide variety of ways, or dies. And given my parents are on a fixed income too, SSI makes the most sense.

I am sure there are other people who for various reasons shouldn't be in the workforce. In fact I know a lot of other autistics that's true for. Some could never do enough work to support themselves. Some could but burned out. Others lived haphazardly off of various jobs specially tailored to them and periodically fell into homelessness in between. Some worked at physical stuff until they became physically disabled. Some lived horrific lives as prostitutes because it was the only thing they could do for money. Most, like me, found that when they were on their own it was all they could do to eat let alone work. One woman I know bounced between homelessness, mental institutions, and prison while trying her best to take care of herself.

But basically for some people, work isn't going to work, even autistic-friendly work. (I for awhile had a very autistic-friendly setup where on Thursdays I could walk down the street less thsans block and weed a garden in exchange for a meal. Most Thursdays I couldn't get myself together enough to make it there even though I was starving.

For other people, especially people who are not in a position where it's already a massive struggle to do the most basic tasks at home (who will wear out their brains just trying to get a single meal), or people who somehow have help with that stuff at home and still have mental and physical energy left over to work, then it does become more of a question of making work more friendly to autistic people. I don't know much about that because it's outside my experience but I have a friend who has put a lot of effort into that and has a website at thiswayoflife.org where I think he has some of his presentations up there for download.

But even as people should be working to make workore accessible to all kinds of people, there still needs to be acknowledgement that there's people that won't be enough for and we need to survive too. (I always get worried about those of us who tend to fall through the cracks of even the best systems set up to get us into the workforce. And people where the effort of getting us into work... I don't know the word for it exactly. But sort of "Even if you could do it, it's just work for work's sake instead of there being a task that needed to be done, and putting the person in that position just means they will be too wiped out once they get home so what's the point other than fulfilling a prejudice that says work at any cost?")

Whew. Sorry for the length. Another annoying feature of my writing is lack of control over it being short or long.



And

I would really like to know where I have gone wrong. I have always had to work and I have always been poor. I don't know how people choose not to work. How do you eat, how do you pay rent, etc? I thought disability was based on income that you earned prior, I have never earned enough to make enough on disability to support myself so I never even though about looking into that. Editing to add, I want to work. I am able-bodied and aside from this there is nothing wrong with me that I know of. I just want to be left in peace and not bullied. Even from the very first job I had I always worked hard and did a good job. I was the chicken sandwhich maker at Burger King and my supervisors were always pointing out that I had the cleanest station and that is how everyone's should look, which made people hate me even more than they already did. Where everyone else was getting in trouble for goofing off, the regional manager had to have a talk with me about how I could only do one thing at a time and not to get so stressed out. Gah...I am really spinning out right now because I got a bad evaluation from work today, I am probably coming off harsher than I need to but I am SO frustrated right now.

A truly great post, Anbuend. Thanks for letting me see the "work" issues through your eyes and reminding me that we are indeed on a spectrum with vast differences in degrees in levels of functioning. The SSI interview tactics seem despicable. They are probably devised to weed out con-artists and slackers, but in trying to do that, they humiliate and degrade people who really need and deserve benefits. They should find a better way to weed out the bad apples. I think they should start recruiting autists. Seriously, if it truly is 1/110 they (government agencies) better straighten up and fly right. Wake up and smell the spectrum. Hellooooooo - it's the spectrum calling.