Published on 12, July, 2020
Something I've posted about before, I know, but because of the deep seated and longstanding issues within my family, I'm always on the lookout for further information. Now, I've just been watching this video on "The Burnout Recovery cycle", which admittedly will be useful to some to enable them to plan and cope. https://www.youtube.com/watch?v=aG_41uh-WAIAnd yes, It might have been useful for me in the past and I can see how it works for a well motivated individual like Paul Micallef. But, like many of the speakers and advocates I follow, there he is looking well groomed, organised and very much in control of his life. I accept that appearances can be deceptive and we don't know what goes on behind closed doors in a person's private life. But even taking that into consideration, this still feels very different from our family problems with burnout. All the speakers and autistic advocates I can find seem very well informed and motivated, not to mention very well groomed and presentable. And within our family we see a very different picture. People who opt out or withdraw altogether, never rejoin society, major difficulties with personal hygiene and too burnout to do very much at all other than very basic things like eating and going to the loo. Motivation is low, especially given the mental health issues that then accumulate (unhelped by services who have been able to offer nothing - we've tried) and anything else is understandably a low priority (if basic survival is a problem, you're not going to be thinking about how greasy your hair is, for example). And they're not really in any position to use self management strategies such as those outlined in this video. If they were, they'd already be well on the way to recovery, with only minor support from others. So... Is this really ALL burnout? Should the term have subdivisions (e.g. to cover a range from brief, episodic burnout that is amenable to self help to almost total collapse and withdrawal)? How can we best support someone in this situation? And where are the videos from people who've recovered from, say, years of burnout and needed significant support in the meantime? Is there anywhere that families can turn for more specific advice and guidance? It's very hard not to feel desperate about this.
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
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. :(
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.
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.