The burnout problem

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I recognise so much of this. You could almost be describing my life with my own mother.

Can I ask how old your loved one is? 

I ask because it took me years to climb out of that cycle from the age of 18 to 23ish. It could be that they simply need this time to recalibrate and eventually find some energy to try something new. 

The first thing I did to try and shift out of doing literally nothing all day (other than walk my dog) was some short Open University courses. Easy, little pressure, and in my own space.

You sound like you're supporting them as well as possible in their current state, but like I said before 'nothing changes if nothing changes'. I honestly wish my mum had sat me down and gone through the big conversation, got everything out, made it all exposed and kept it a thing that's fine to talk about - not some distressing thing to keep tip-toeing around. It would've been horrible at the time. Lots of ugly crying, despair, terror... But it would've shifted things.

I wish we'd also found some proper support. Someone to help me realise that I'm actually an OK human. Someone to get me outside, doing things, engaging with life. Just a friend or family member maybe. 

I went on for so many years trying to fix myself, and trying to catch up with my peers, when all I really needed was to learn how to accept myself for who I am and try to find what I wanted out of life.

This doesn't just happen. It's taken me 20 years of struggle to finally get to that point, but I think with the right support I could've got there a very long time ago and lived a far happier life (and so could my mum). 

Many thanks.  Our relationship is rather strange though.  I think that love and trust are there, especially now that we don't turn to mental health teams for "help" as I think that this can make a person think that we're in league with them, imposing meds, a very watered down version of CBT and a very superficial, one-size-fits-all "recovery" programme.  We did it in the past out of desperation and an misguided belief that these people were experts.  They really weren't. 

But communication remains difficult and currently only relates to food and, in a more limited way, money (of which very little is needed for this complete opt-out lifestyle).  If we attempt to initiate any talk, however gentle and tentative, about "issues" it invariably backfires, with the person clamming up and retreating again.  There may be something in our phraseology or approach that is reminiscent of services attempts to open up engagement, but the effect has the oppostive to what is desired.  And this leaves us in a stalemete, position, at least for now.  

I also suspect there is a tendency towards situational mutism and that big conversations, especially about how things are going, hopes and more general needs, are automatically stressful and induce this.  So our "feasible area" is very small.

What I'm doing is keeping interactions regular, brief and safe.  The subject matter comes from the person themselves.  So does the general situation for any exchanges and it's clear that I'm seen as more approachable when I'm busy on the computer, in the garden or watching a film, for example.  I sense that I'm seen as safer and less likely to go for "The Big Conversation" (which is scary!) if I'm obviously preoccupied or busy.  So underneath I'm prepared and ready to convey warmth and acceptance in all my responses (which does, after all, coincide with what I'm feeling as a parent so it really is authentic, even though I've thought rather alot about it and it does, in some ways, remind me of my previous masking and scripting from long ago).  If I attempt to talk for too long (which really isn't very long at all), then the person opts out and goes back to their room. Very quickly, in a brusque, "run don't walk" manner! 

This approach has taken us out of the danger zone, I think and hope, but still not restored the kind of relationship I'd hope for, where difficulties can be safely discussed and thoughts shared.  Jobs and studying are seen as threatening and the merest mention is very triggering.  I found this out a long time ago and don't do it any more.  In fact, I'm getting the impression that life itself is seen as some kind of imposition which now has to be dealt with through extreme avoidance.  Given everything that's happened, I sometimes feel that way myself (i.e. two people once decided to make a baby and now I have to endure the consequences!  And that's very bleak, I know)

Getting a dog might be an option but I'm afraid of ending up in an even more demading caring role, especially as I age and get more ill myself.  I could look for a very calm breed, I suppose.       

Sorry.  I really do appreciate your thoughts and they confirm that we're doing what we can, whch eases my mind as much as may be possible.  I might be able to encourage something non threatening like meditation, which I've done myself for a long time, but overall, yes, this feels like hard mode and I don't know how to switch to something else.  Your internal drive is so precious.  I wish I could install this in another person but even that thought seems somehow wrong and ableist.  It all brings me back to acceptance, which I suppose isn't really acceptance if I expect "improvements" to emanate from it.   

I think it's important to recognise that you are doing the absolute best that you can, and are keeping your son/daughter safe, comfortable and sheltered. We're living life on hard mode, and to me it sounds like you're doing a great job.

From what I can make of their situation, it sounds like your loved one is truly stuck in their lifestyle, so without some kind of influence or change in their behaviour, not much is going to improve.

I thankfully always had some kind of internal drive to want to move forwards and progress somehow, so if this is missing in your loved one, I feel that they'll need some kind of assistance (I don't mean professional).

The things that saved me and shifted this limbo state in my life are:
- My pet dog which gave me a purpose to get outside and I could add small errands that I had control over
- Part time work in a shop (literally a few hours a few times a week) allowed me to feel like I was part of society rather than being a total hermit (this also allowed me to have very short, predictable interactions with people)
- Part time study that eventually led to a career 

It depends on the kind of relationship you've got, but I'd suggest that your concerns need to be talked about with them. They probably feel the same things that you do, but just have no concept of how to start to fight themselves out of their current behaviours.

By looking into what could be the very first baby steps out of their situation (looking at a very minimal part time job or study perhaps) together as a family could be the little nudge they need to start helping themselves. Nothing changes if nothing changes.

As an additional note, meditation has helped me massively with my day-to-day well being and I wish I'd started it many years ago as it would've saved me a lot of stress and wasted energy.

Many thanks.  And yes, it does feel right to me and would certainly be what I'd prefer in that situation.  I just think that, as years go by, I lose the courage of my convictions and start thinking that there must be something else - that could be dangerous, though, and see me playing into the hands of those same people who failed to help us in the past.  

I wish I could find some local survivors.  I did join a couple of groups locally, but they seem to be dominated by carers for autistic people with more significant support needs that have been there from birth and very often associated with learning disabilities rather than just being autistic.  And the parents that do turn up tend to be the non autistic parents/carers so I feel as though I'm instantly in a minority. 

Online, it's a different matter, but I mostly find survivor stories in the first person, where the person develops their own ways through.  And yes, it's bound to be that way because the genuine help is most often self help.  But I'd really like to hear from survivors' families or of survivors' messages to families regarding what helps most from the outside.          

For what its worth, I think you are being monumentally RIGHT in what you are offering.

Giving space and maintaining a decent environment - for me, are the key.

An outsider may well consider that these are not enough / neglect - but I think they would be WRONG.

You are not dealing with a normal situation nor a "normal" brain, so don't worry about normative opinions.

I wouldn't have got through my darkest times without space and a decent environment - but I would equally have abandoned these things to my detriment if I had been subjected to well-meaning fuss and busybodies.  Whether this is right or wrong in the cold light of day and with the benefit of hindsight really doesn't matter.  I know I would have "made a break-for-it" if my nearest and dearests had tried to load me with well-meaning interventions and I'm absolutely certain that this would have generated far greater existential risks.  That is my truth anyway.

Stay strong, keep the faith.  Trust yourself.  I get the impression that you know what you're doing, and you're doing it well.  Brava !

btw - all I wanted was to be around a person who could understand what I was feeling / going through.....if you find you are local to "survivors" who are willing to meet with the human in your life who is currently afflicted, I could imagine that this would be more constructive than professionals / prescriptions?  Hard I know, and definitely a risk for all the self-evident reasons, but maybe worth consideration/research?

I hope some of this helps.

Yes, it has taken me decdes too.  Adn the delays in realising have added to the difficulties for the rest of the family.  I come from quite a large family, with lots of cousins, and if just one person had been identified this might have made a huge difference to all of us.  But we've kept on seeking help in all the wrong places and being misdiagnosed and given the wrong meds.  For years. 

Now what we're seeing is, I believe, the results of there being no understanding and accomodation of our differences from the earliest years right into adulthood.  And then it seems we're just blamed and then pathologised but not actually helped.  

The sense of stuckness is very familiar to me.  I think that struggle is part of life - it certainly has been in mine.  But when I see it in a loved one, and going on for so long, I am stuck in a different way.  Yes, staying very close to the beached calf but not actually able to get into the shallows and help.  It really feels as though external help is needed, but I'm very afraid of being bounced into seeing crisis teams, early intervention or CMHTs if I push for that using the usual channels.  We know from experience that this doesn't help us and, in fact, can be damaging. 

We definitely need ideas, although we do appreciate that we'll be piecing together a very individual approach.  And ideas from the outside that will chime with what's going on on the inside. 

I suppose my general question of anyone who has come through would be around what helped or hindered you in terms of support from those around you.  And what made the most difference. 

I'm worried that what we're doing at the moment might be aligning with what I've learnt from autistic advocates (giving space, remaining person centred, building trust, maintaining a decent environment here etc) but also that, in many ways, this could look to an outsider very much like neglect!  The fear is that we could be monumentally wrong in what we're offering.  :(

Yes, I am thinking about the will to live and what might be called the more general life force.  It looks as though it's being sapped or (necessarily?) redirected towards basic functioning after various shocks, changes and traumas on the way towards adulthood really took their toll.  I'd like to focus on small steps but I'm in the position of parent/very concerned observer and wonderng how we can foster such developments.  

Psychologists have let us down as they have indeed focussed on questions like, "What do you want?" (and their allies, "What are your goals? and "What do you think you need from our sessions?")  All directed towards somebody who has closed down and is probably very afraid of the answers being explored, probed  or challenged.  There is huge mistrust and this adds to the difficulties.  

I think our own goal is to somehow restore trust and maintain a sense of safety and acceptance, but as to the nuts and bolts of this and whether we might be, in the process, focussing on the wrong things or being rather clumsy in our approach, I cannot know without any feedback which, like engagement, isn't going to happen.  So we're stumped.  I wish I could see signs of recovery from burnout from the person themselves, then we could get behind it and support, but as it stands I'm just beyond concerned.          

Number said:

Try to laugh about it - I found it really helped to laugh at my own hopelessness - it released a lot of inner tension.

Great response, and I think what you state in this quote is so fundamental to getting through life with brains that aren't wired in a way that is compatible with 'normal' society.

Breaking down the illusion that we all HAVE to conform to what are totally made up conventions is the key to accepting who we are, no matter how 'hopeless' we might appear to be from the persepctive of what is seen to be 'normal'.

Hi Jenny,

I firstly wanted to say that this thread all sounds so familier to me. I've only just (in the last few months) come to the realisation that I'm on the spectrum after decades of struggle, and it's genuinley reassuring to know that other people have gone through similar experiences.

Your analogy of a whale with a beached calf is heartbreaking. I know that my own mum would completely agree with you regarding the pain she's had to experience as a result of my struggles in life.

I've been where your son/daughter is. I recognise the way they're living, and remember being 'stuck' there. I managed to gradually climb my way out of it, and ,although I continue to struggle, have managed to live a somewhat decent life.

I'd be more than glad to chat with you on here or whatever if you think I can be of any help with your situation or give you some ideas to try. 

All the best,
Jay

When I was younger I would go until I'd break down, never really with any clarity about what I wanted or a manual on how to approach life. A few key things helped, one was learning to envision a version of 'me' that I wanted to be. Learning to dream intentionally. Writing down 10 attainable small goals yearly and 10 long-term ones. Being asked "what do you want" can act as a trigger. And then engaging in small disciplines regardless of how I felt, but I was quite good at mental escape anyway and this can be a form of it. What is important is to not just commit to a thing like making a bed daily as an act of rewarding my future self, but practicing small indulgences, as all disciplines should equate to reward (not having to straighten out my bed at the end of the day when I'm exhausted. Or spending a little extra time parking backwards when home so I can leave in the morning with fluidity. These are essentially future rewards I'm paying myself.) These things are better to do by starting small. One thing until it's part of my daily script as in "stick to the script". Going for a walk is a discipline. The important thing to remember is life should be about living, being alive - there will be more than enough time to be dead. ;) 

The harder aspect of this is the practical daily small steps - always one thing at a time, and always doing a little each day. Which ones to take. Now, I've had to invest in specific matters of vigilance with intent to manage future accidents, as well. Not screwing a lid on properly will 9.8 times out of 10 result in a disaster. Not being detailed with diet will create painful results. To someone on the outside, I may even appear a bit OCD with this kind of detail. But a psychologist would know the difference. Being practical and reason-ing with my self is different than being compelled by impulse. 

I also appreciate philosophers who appeared autistic in nature and thought. Kant had to be autistic. He made some really good progress in making all kinds of distinctions and self-programmable actions which make sense. 

I feel your passion :) Maybe something here helps... I don't know. The will-to-life is a difficult struggle.

Thank you.....but I can't escape the external noise at the moment due to "the monumental clean-up" to which I refer above.  I need my wits about me.  It is massively draining.

You aren't average. Average is a self fulfilling label you repeat to keep yourself from feeling good about being you. Probably after years of being made to feel less-than by a world setup to get as much out of you as possible, with little care for the person inside who is giving it.

I hope you can find time to close your eyes, breathe deeply, and escape the external noise

Exactly.  But this sense of purpose would necessarily be intrinsic and anyone supporting someone in that position can only attempt to provide the right conditions and opportunties for this to arise.  Plus in serious, chronic burnout the person is in no position to start any job, or even smaller tasks which might gradually lead to that.  

The videos usually show someone who has somehow bounced back under their own steam, found their own purpose, come back into themselves.  And this isn't happening here.  Therefore I despair and doubt my ability to keep on keeping on indefinitely.       

Jenny Butterfly said:

A sense of meaning isn't something you can hand to someone.

I said it many times we need it, to do something that gives purpose, starting with a job where you can use your brain not muscle

Thank you.  And yes, I like the concept of the second mask and actually hadn't come across it before, although I can now see that it's often referred to in passing as the times when a person is masking, often unconsciously, and therefore even from themselves.   It's something that I know has been happening for decades in my own case and it's very difficult to separate out the strands - will the real me please step forward?

I cannot know, but what I think what's taking place within our family (both currently and with other family members in the past) is that the person is trying very hard to live, burning up all their inner resources to do so, even at the expense of other areas of living which are dropped because when it's down to survival, they're not essential.  There are simply no resources left over for engaging with others or most day-to-day tasks.  My greatest fear is that even this approach will ultimately fail and that this might well lead to suicidality.  But unless the person becomes more open and willing to talk it all through, I don't know how to add to their resources, bolster and support them.  Without any engagement, I wouldn't even know whether the person was considering ending their life.  Again, I'm an outsider, wanting to be allowed in but not pushing because I'm not invited and it's been made clear that they're following their own strategies.            

In my dad's case, I did express concerns to my mother, who reassured me that his religious beliefs were far too strong for him to consider ending it all, and this turned out to be true, although I had my doubts at the time, given the severity of the situation.  It went on for years and years though, and it definitely pushed my mother in that direction.  I look back and still don't know what we could have done.  He became significantly better once he got to retirement age and the shoulds and oughts relating to the workplace fell away (the removal of a signficant stressor, which stayed with him long after he became unable to work).  And again when grandchildren started coming (something exciting and motivating which seemed to give him a sense of purpose).  Overall, having complete autonomy over his daily routine and a renewed sense of meaning and purpose really helped.  But beyond that, I just don't know.  A sense of meaning isn't something you can hand to someone.  :(

Thanks Luftmentsch.  It may indeed be that I'm hard on myself.  I suppose I feel so desperate and panicked some days,especially the bad days but then sometimes just because it suddenly hits me how bad this all is, and this feeds into a deep sense of inadequacy.  That's not to say that there's anything out there that might be more adequate to meet the needs of this situation, but I can't help wondering what other parents would do.  I have no comparators and would be aghast to discover I'd missed something (although if I did I'd then quickly seize on it and make changes asap).  

The concept of readiness is probably relevant but I find it hard to accept as the years go by.  When we were with mental health services for between 3 1/2 - 4 years, readiness and insight were referred to A LOT as the reasons why progress wasn't being made.  And, of course, services can and do back off, citing a refusal to engage, unlike parents who are still left to cope as best they can. 

Unfortunately my experiences with my dad show that a person may well never be ready and that's just what life is like.  This makes me want to weep.  I feel we're hopelessly lost and completely off the map here - a feeling I've now discussed with more than one therapist and which I can't resolve.  I feel like a mother whale with a calf that's beached in shallow waters, unable to move, with me unable to help or, given the strong mammalian parental bond, to move away.  At this point therapists usually resort to talking about self care, putting my own oxygen mask on first and relaxing, as if I'm not already doing these things (albeit between bouts of panic and utter helplessness).   

So then I resort to reading around promoting readiness or pre-therapy, but even there I've not turned up anything useful.  And all the info on burnout I can find, which somehow avoids the info that parents to adults need.  

Acceptance is an easy word but also something I need to come back to every day.  I wake up each morning, my brain reloads and I jolt into wakefulness and think, " But this isn't acceptable!  It's terrible!"      

Honestly?  It sounds like you're already pretty close to the "perfect parent" in what must be an incredibly difficult situation.  I really think you shouldn't be so hard on yourself.  With the best will in the world, there's going to be a limit to how much you can do until your son is ready to take the next step himself -- at least, that was my experience with my own burnout.

https://www.youtube.com/watch?v=2CXmdkPLrBA&t=444ssecond half of that video, he talks about total knockout burnout, though under different name, appropriate as well. ''mask behind mask, dropping the second mask''

I'll only add about the overwhelming desire to end it, because it feels like the DOOM is going happen anyway, so why not do eutanasia yourself. or how I refer to it ''go seppuku''. While you haven't got power to leave bed, and constantly dwell over how it could be done without leaving flat.

I came up with a clever idea previously, just in case., after I reviewed all possible ways with100% success rate, and not implicating anybody, it turned out that none  is feasible indoors, 

I thought I sorted that problem at the beginning of adulthood, after failed attempt at the age of 15, so I recognised the chain of thoughts as very familiar rightaway. and to prevent trying something stupid I was making myself to think of those as the only available, and I couldn't go and do any of them, because I couldn't leave bed, and at rare times I did, the thought of going out and encountering some strangers was to terryfying making it impossible a task. more or less.

Hopefully it can be tried as preventive measure by others.

Thanks H.  It feels as though my best falls short, which makes it feel pretty much the same as when it happened to my dad in the 70s.  All of those years and I still don't know what to do.  I think I've ironed out a fair few "what not to do's though!

Otherwise, we're simply holding steady with the approach I've mentioned before:

Maintaining a safe, comfortable, low arousal environment,

Low - no demands,

Good food + occasional treats,

Remaining as person-centred as we can, ready to listen and continuing to give occasional invites to shared activities (always refused, unfortunately, but my thinking is that it's better to feel included).  

No fussing, no forcing, keeping it calm and natural.  

Can't help wondering though - if I were channeling the perfect parent, how might this look?