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. :(