Bit of a ramble following another shutdown...

Yet again I have had another shutdown at work and have been sent home.

I was off work before Christmas due to the shutdowns and started to feel better after a few weeks.  I have only been back at work for just over 3 days and I have had another one.

As a result, I am now worrying about my security in my job and the prospect of finding another job in a similar role.  Since my shutdowns have become worse, the director of my department no longer speaks to me and I have yet to see the follow-up from occupational health.  My boss appears to be supportive, but I am aware I am bringing little value to the company at the moment.

My confidence is currently really low and I am frustrated I can't manage things better.  There seems to be no help and support as I am considered to be very HF and so don't qualify for adjustments, support, guidance etc.

I was wondering if anyone else has been in a similar situation and whether you manage to get the help and support you need?

I am worried about my employment as I have a hefty mortgage to pay with no financial support from family etc.  I can't afford to lose my job as I have been down this route before and ended up being homeless.

Sorry for ramblings and lack of cohesion, my anxiety is very high and I still haven't recovered properly.


  • I would be interested to hear how you experience your shutdown at work. I have looked for further information on the internet, and can relate a lot to what they describe, so am wondering if autistic shutdown is playing a role with me. I am a 50+ year old male diagnosed with Asperger.

    Consider also perhaps the following information about experiencing shutdowns, via this link:


    https://everydayaspie.wordpress.com/2017/02/05/574/


    I find it a very befitting description indeed ~ although I have learnt to feel rather than to think thoughts, and do not as such do inner dialogue any more, unless it is conducive to do so ~ such as with writing.


  • Hi,

    A lot on this thread resonates with me and first time I have heard about autistic shutdown. I have been off work before christmas too, and having problems with work, fearing I will lose my job. Work appear to be very supportive, but I get the feeling this is just a thin veil. I would be interested to hear how you experience your shutdown at work. I have looked for further information on the internet, and can relate a lot to what they describe, so am wondering if autistic shutdown is playing a role with me. I am a 50+ year old male diagnosed with Asperger.

    I am reaching out for support, with a social worker, and a psychologist; the help I have tried appears very good on the surface, but again feels like it is thinly veil, almost ghost like. I don't have a mortgage, but have housing problems, my landlord wants me to move out as they want to significantly increase rent. Problem is my rent is low, so I have no options locally, and moving I am waiting to see a care co-ordinator, but don't know  if she will be able to do anything.

    I should have access to a mental health nurse and a mental health support worker, I did have access to a mental health nurse when I was was with the diagnostic team and she was an immense help. I struggle with anxiety & depression, I have got increasingly angry about things at work. comments at work have been worrying "is work the best place for you ?" from a senior manager, "when you're at work should keep your personal problems outside work hours" from my line manager; "you don't have any problems communicating" 

    Random

  • I’m exactly where you are Starbuck. I think many of us are. You’re not alone, and trust me, you’re holding up better than some of us. 

    The ap is helping me trendiest. It’s still a slow slow process, but I’m getting there slowly. With the tremendous help of you guys. 

    So thank you to you Starbuck, for helping me get clearer on my thinking. 

    My victory for the day. Is that I discovered that I can’t eat and drink on the same day. Some days I can do neither. But I noticed, that the migraines weren’t so severe, when I drank instead of eating. And that I find it easier to drink, rather than eat. I noticed that I wasn’t as anxious about drinking and it is easier to get a drink of water than it is food. 

    I immediately remembered, that I have in my cupboard, some high quality, simply delicious, chocolate protein drinks. I also remembered I had some soya milk in the fridge. I then temembered I had almond butter and chia seeds. It’s unusual for me to have any milk and for me to be able to think, independent, about what to eat. I put these ingredients together in a smoothy and I can’t tell you how delicious it was. Strike one. I can now drink a smoothy, which is easier than food and obviously not as good as fresh food, but it’s not junk, but it’s a start. 

    I can barely tell the difference between happy and sad, or even what to do in a morning after I wake up. I used to have a full time job, and now, going to the job centre once a week is overbearing. 

    It’s a slow process, but you’re doing a good job. Take care of yourself and don’t give yourself a hard time. But don’t minimise the difficulties either. They’re real struggles, whether they can be explained succinctly or not, but we understand each other, which means we can support each other. We’re not alone. Lots of tlc. X

  • Thanks for your contribution everyone as you have helped me with some really useful information, as well as helped me to put things into perspective.  I have been offline for a few days just to get my head together, but the recommendations on apps, biorhythms etc. are all things I am exploring to help me understand what is happening better.  Sadly, I am not good at recognising my emotions, so this is something that needs more time and practice.

    I am now trying to be more positive and I have taken some active steps to address things at work as well as they haven't honored some items that they said they would follow-up on.  I think I have realised how bad I actually was last week in general before the shutdown, and I am still feeling fragile in some ways now, but trying to handle it better.  (sensory sensitivity becomes more of an issue following a shutdown)

    My brain is a bit mashed following work so I am going to keep it at that now to save mindless ramblings that don't make sense to anyone.

  • I have also started using an ap, called Daylio and it’s been of great benefit. My moods just before (I only actually got it at that point) and all through the Christmas period, we’re all over the place like crazy. I thought I wasn’t noticing a pattern, how could I, it was crazy. But now that period has passed, my moods have stabilised considerably. I am still requiring lots of rest and lots of old black and white films off YouTube, but the ap made me see clearly, just how stressful christmas is for me. 

    I can also relate fully to everything Deepthought expressed. I’m still working this out, but fortunately, I can thank the exhaustion, because it’s forcing me to slow down, and just be. However that might be, at any given moment. I fortunately haven’t got full time work to contend with, but I am trying to get back into my online job. I haven’t even put in any new ‘holiday’ days, but other things, like resting when I need to, are taking priority just now. Keep going. You’re doing better than you think, 


  • P.S. Check perhaps also the following thread on this site via this link:


    http://community.autism.org.uk/f/adults-on-the-autistic-spectrum/11277/hi-i-m-new-here-does-anyone-relate-to-what-i-am-sharing-in-this-thread/58213#58213


    If you have any questions, feel entirely free to ask them.

    Have a good one, and many many more.



  • Deepthought said:
    What are the warning signs that you are going into a shut-down ~ or else what do you notice about having them?

    and:


    This is something I am currently trying to document as the last time I had shutdowns this frequently was probably 8 or more years ago.  

    My partner has noticed I get more agitated, pace and I struggle with sleep.


    The 'agitated' thing is a result of hypertension, and the more hypertensive we get ~ the more agitated we become.

    Learning to sense the hypertension more and the agitation less is key here ~ in the sense of feeling it rather than so much thinking about it, as thinking about it can only really be productive once we actually have an organised sense of what we are thinking about.

    Feel the hypertension through emotionally and physically, and at other times, think it through or also let the thoughts come through more calmly, when more relaxed.

    At high levels of hypertension, with agitation, frustration and all that, thinking doesn't involve thinking as such, in the sense that there is little going on that could be described as being rationally and sentimentally balanced (or conducive) thinking.

    Instead, we get rather more what I refer to as 'thought-tracking' ~ which involves following reproductive and metabolic compulsions or impulses to do external things in order to survive; rather than doing internal things (i.e. just sensing and gently-deeply breathing our inner tensions through, which bit by bit processes and ameliorates them) in order to thrive ~ in terms of better thinking (and in bed sleeping ~ or if not resting).


    My partner has noticed I get more agitated, pace and I struggle with sleep.  Days before I also get a bad whirring tinnitus in my left ear and space out quite a bit.  In fact a colleague said I was looking 'glassy eyed' a lot. 

    In order to process the sensory data overload report that tinnitus is, do not listen to it directly itself, as it is a system bypass, such as a person telling you what someone else is unable to tell you because they are otherwise engaged, or compromised. Listen instead to the comparative quietness that is not the tinnitus and feel it, sense it, whilst gently and deeply breathing, as if your bladder and womb are you lungs, and your heart is your mouth.

    Practice this perhaps whilst going to sleep, and after waking up before you actually get up in the morning. Doing this regularly or even consistently allows it (eventually once developed) to happen automatically when you start getting too tired and start shutting down, so that you can take appropriate action such as taking a break and so fourth ~ before things get beyond your remit.


    I find processing and managing my thought patterns becomes very problematic as well.  Normally I am aware of catastrophic or anxious thoughts getting out of hand and I can manage them, but before a shutdown they go on overdrive and are too fast coming and intense to manage - hence my anxiety goes through the roof.

    Like the tinnitus, these are warning signs to feel, to breath, and take a break or slow right down before you actually shut down. 

    With the thought patterns ~ learn to pay attention to them more and process them less, as they need not to be managed so much, but rather more governed with either red lights, amber lights or green lights as cars are at road junctions. If you process or get too involved with them, they are in each case taken off line and back-ups come on line anyway, hence being left with a multitudinous deluge of them during anxiety and shut-downs ~ as being internally derived and personally driven stimulus.


    I will log these for future reference, but the one item I am struggling to recognise is the level or stress I can handle as this does seem to vary.  Some days I can handle situations, whereas other days I am ready to breakdown over the most stupid insignificant thing, that even my partner questions what the hell is going on.  The scale of tolerance seems to shift like a barometer, so there are obviously influences at play, I just haven't figured out what they are or how severe they impact on things.

    Try perhaps this link:


    http://www.biorhythm-calculator.net/


    I'm not sure if I have seizures like you experience.  The battered mind probably describes it better as I normally become despondent and withdraw from a situation.  I become non-verbal and my limbs become stiff and heavy, to the point I can't move in some cases.  I have had instances where my hands will twitch or shake, but I wouldn't class that as a seizure.  The whole thing leaves me incredibly exhausted for days and I know I am more susceptible to more following having one. I find my memory is awful afterwards as well and I stammer some of my words.

    It sounds more like you are experiencing post traumatic shock symptoms more than seizures as such, perhaps, what with exhaustion, twitching, confusion and communication glitches  ~ which is pretty normal after being temporarily shocked or stunned by an overload session. My memory is awful afterwards as well, and I lose a lot of words and find I only have similar words or indirectly relevant words available, and stammering used to be a problem also, but I can adjust for that now as I recognise it as its about to happen.


    I haven't had them this bad for 8 years or more now so something has set them off, but it has now been going on for 2 years and they are getting worse and more frequent so I would like to gain better control of them.

    Might just perhaps the prelude and the aftermath of being diagnosed be a centre point for this two year getting worse thing, maybe?

    In my case I was really really whacked for a similar duration of time, only a bit longer, but I was really really prepared for it (as I started studying psychology at the beginning of the nineties) ~ although I did have some of my worst 'mind-mucking' seizures ever and lost several months of memory. I even had a few body-bucklers as well!

    Normally, most people whack-out to some extend for about a year or so (12 to 15 months) on a life-changer like a substantial diagnosis or bereavements etc, and although things might be a little tentative for a couple of years after the first, most people adjust relatively well as they suss it out singularly themselves, or collectively with others, such as we do and are doing here.


    If you find you are struggling to manage them or you feel one building up, how to you tackle them?

    Well as already  alluded to I have a set weekly activity schedule, with Thursday to Saturday being my busier days, and then Sunday to Wednesday being my least to more busier days. Things get scrubbed off the schedule when necessary, although it does get proper messed up during seasonal changes, but I have it completely habituated and hold to it relatively well, all things considered.

    But as for 'tackling' them, absolutely and completely and utterly butterly not ~ long range missiles, bombers, jet-fighters, drones, sniper-rifles, mines or traps only!!! Avoid 'em at every opportunity and all costs. Grin


    Do you rest or preoccupy yourself with your interests?

    More seriously though, to recover from shut downs I watch DVD's of things that lift my spirits in whatever way, i.e. sci-fi to comedy etc, and just completely distract myself from feeling all big and confused, depressed, demoralised and all that state of affairs.

    Conferring with others who are similarly experienced or qualified as such, helps too, such as you are finding, and a good bit of transcendental meditation to surf the proverbial smelly stuff rather than drown in it.

    On the topic of transcendental meditation, and the tinnitus thing, if everything is starting to build up, and if you have some 'ear-bud' headphones ~ there are modulation frequency sounds (from single pitches, natural sounds to music) that you can listen to, and even interact with by gently humming if you fancy, in order to harmonise your psychologies, calm them down and get them all big and organised again (given a bit of time), via the following link:


    https://mynoise.net/noiseMachines.php


    Yes this post may have seemed like I was being over the top and I probably was, but when I hit these stages, my mind stays in fight or flight for some time.  It's only now after having some sleep, I feel in a better state to analyse what happened.  Prior to that, it's most likely a wasted effort, but I feel I desperately need help as I am so on edge at that moment in time.

    I so know what you mean, but not in the sense of being over the top, as this is hefty stuff and needs must. I completely respect and utterly appreciate what you are going through ~ I've been dealing with this stuff myself for a few years short of five decades now, so I know where you're coming from on this and how hard it is.

    Remember to respect your weaknesses and honour your strengths, and although analysis during crisis is sketchy, you were wise to seek council, and it seems you have found out some very useful information regarding your situation from the other replies.

    You have done a service not only for yourself, but for others too who can also learn from our shared experiences and knowledge. Yay you and everyone else too, Yay! 


    I know shutdowns can't kill me or harm me, they just knock me about and screw me up for a few days.  My concern lies with their growing frequency and the impact it is having on my life and work.  I am always exhausted so struggle or can't do the things I love and I spend all my time recovering so I can be ready for work again.  It's a viscous cycle that I need to break and work are now concerned that I have had time off and can't seem to make it through a full week.  So in essence, my worry is driven from my employer in one sense and my lack of well-being from not being able to do the things I love as a result of the exhaustion.

    Resist, resist and resist worrying about anything at the moment, as you need by far more to be resting and recovering your energy in the present time in the current place ~ keep well away from contemplating anything to do with the future, as stressing about that is a waste of energy that you do not currently have to use elsewhere.

    Keep your attention on you as you are and where you are ~ fullus stoppuss maximuss.

    This is so so very important, for the love of life and all that you hold dear, keep your attention in the present where you are, physically, and as such rest and recuperate, and once you feel rested and recuperated, rest and recuperate some more.

    Do not be fooled by a primary recovery as being a full recovery, you are in energetic debt and the interest payments must be met too.

    Getting caught up in stressing about not being able to do this or that is not respecting your weaknesses, but wasting energy, and not as such honouring your strengths restricts your capacity to hold and store energy also. Set aside that malarkey right now perhaps, and respect your weaknesses and honour your strengths by looking after you without distraction, or deviation, and as such rest up buttercup!


    I'll continue to log the signs and see if I can then take a step back further to see what might have led to that symptom being triggered, prior to a shutdown.  

    Definitely a good use of energy, well worth the expenditure on that one!


    Thanks for you help on the matter.

    I am glad to have been of some service, and you are entirely welcome.


  • Former Member, hint:

    In addition to getting all the different teams in a given local authority to work together [or at least not against each other ;) ], corresponding teams at different local authorities throughout the UK should work together or convene together to share experiences and work out better ways of doing things.

    Every team should also be regularly reviewing:

    • What's working (and they should keep on doing)
    • What needs to change (because there's evidence of problems with the current approaches)
    • Ideas for experiments to make things even better
    • What they ought to be telling other teams about
  • Very kind of you to say such a thing, but I am merely standing on the shoulders of giants.

  • Sounds like you have some great people helping you presently and this approach with baby steps, although I imagine very difficult, sounds refreshing if it is changing your whole outlook.  I think when you have been stuck in your ways for so long, you do need a whole new outlook and approach or else you just end up falling in the same ruts and I think that's where I am stuck at the moment.

    You will have to keep us all posted on the developments of the group as this sounds really exciting.  This is just the type of thing that is needed in areas where there is very little support or places to turn.

  • No, I know what you meant, I guess I was just saying, you’re not alone with them. In that, I always thought I was alone with them until I started meeting others like me on here, and finding others made me start to realise that I wasn’t alone with them and that we can do something about them. 

    Yeah, we definitely need more help out there. 


  • The basic problem here is a huge western cultural fallacy that "everyone busy working as hard as they can" equates to "maximum efficiency".

    It would take the following to fix this:

    1) enlightened individual diverts a % of total budget to deal with important but less urgent cases, so that they are dealt with earlier, whilst they are cheaper to fix. This requires faith that this is the right thing to do IN THE LONG TERM.

    2) spend the rest on fire-fighting as usual

    3) over time, the number of urgent cases should come down, if the % being diverted to a preventative approach is high enough.


    I did have an urge to cover this topic myself, but I tend to go into heinous detail when I do, so I thought best not, and you have rounded and summed it up a total treat, nice one!

    Total bonus factor ten.


  • I suppose I didn't explain myself very well - what I meant is that ND struggles that I battle with are hard for NT around me to understand.  I didn't mean that they are exclusively my problems.  Smiley

    Thank you for sharing your experiences though as it does help to feel like you are not alone and going mad in over analysing everything.

    ASD is definitely getting more recognition, but it will be nice when it is celebrated and each individual is appreciated and helped with the skills they bring, rather than the things they struggle with.

  • Oh trust me Starbuck, I am 100% the hare. In one group I’m in my nickname is tiger, because I go at things full force. This is all totally new to me (baby steps) and it’s not my way at all. But I realised, that ‘my way’ was no longer supporting me. I had no idea how to do things differently. Like you, I have always just ploughed on, but it got to the point where I had to finally admit that I needed some help. And it turns out, lol, that baby steps, are pretty good! lol! It’s not easy, but my work coach at the job centre drills this into me every week and so does the well being officer. It’s a strange thing for me to do but with surprising consequences. For example, as I’m learning to take these baby steps, my whole outlook on life is changing. I am realising that I was seeing myself through the eyes of nt’s, and I don’t know if I have yet fully accepted the diagnosis, but the less I do (in terms of ploughing forward), the more I realise I was going about life the wrong way. I was trying to ‘fit in’ and now, I’m learning to be me and my life goals etc are changing. Everything’s changing. It’s like my life, or outlook, is moving on an axis and my priorities and everything are changing. And it’s all down to baby steps. And they really are baby steps. But I needed help with that, and I’m getting it from the work coach and the well being officer. The wellbeing officer isn’t experienced with work with adults with autism but she’s committed to helping me and she’s come up with loads of great stuff so far. She’s even told me I can have funding to start up a group in the area for adults with autism. 

  • My darling Starbuck, the other challenges that you say you battle with daily, that you say are yours and yours alone, I promise you, they are not yours and yours alone. They are mine as well, and many others on here and in and around the world. The reason they are so hard to explain and why it is so difficult to get others to understand, is because the language we currently have is nt language. It comes from a shared understanding, a certain world view, one that we don’t share. However, up until recently, we were barely recognised in society, let alone have a voice. And now that we’re finding our voice, but we haven’t yet quite found the words that would communicate what life is like for us. But I’m finding, that the more I identify myself as disabled according to the social model of disability, the more help I’m getting and the more inner clarity I’m getting. You’re not alone with this and the only reason we have issues is because we live in a different world to them. We don’t really, but that’s another story. But we do think differently to them. 

  • I totally agree. I’ve said all along, give me an inch and I’ll give you more than a mile, meaning I know I don’t need a lot of help but I need some help but it’s got to be something that will work for me and then I will give so much back in terms of the effort I put into my side of the bargain.  The fact that the wellbeing officer listens to me and admits she knows little about autism, is enormously helpful. And it turns out, she doesn’t need to know everything about autism, damn, I’m still learning, but she is helping me to accept it and take baby steps that are important to me. She said we might make some mistakes and there are things that I won’t find easy, but have to push through. For example, I have a huge avoidance aspect to my autism, and she said there are times when I have to push through this. But she’s not just leaving it there, she’s helping me to come up with plans/routines to help me work out when I need to push myself and when I need to give myself time and space to be me, and process and rest from all the pushing. 

    I have always said, my greatest work as a social worker came from the times I simply listened. 

    It does take just one person, you’re right, but there are other factors and one of them is that we have to take ownership of our needs and know, that we are protected in law and that we have certain rights. These are things offered in a civilised society, they’re not ‘charity’, they are what we need to be our best selves. Disability is not to be pitied, but supported and respected amongst all men. In the UK, we now work from the social model of disability, which changes everything. 

  • Hi BlueRay,

    I'm glad that you are getting the help and support you need, but I can sympathise on the burnout front.

    I think us Aspies think deeply about most things, but for me, that's how I go about understanding the world and learning from it.  Like you, I have accepted that this is who I am and I am thankful that my diagnosis is nothing life threatening or even worse terminal.  There are many people in this world in a much worse situation than me, so I tell myself that daily and be thankful for it.

    But like you, the burnouts and frequency of the shutdowns is starting to grind me down now.  Aspie or not, anyone who spends their time always exhausted and recovering just to go to work is going to get anxious and depressed over time.  It's for this reason that I feel compelled to find a solution so I can start living my life and prevent things getting any worse.

    I am a sucker for ploughing on and not realising when I am pushing myself too far - baby steps are not my thing, more black or white, all or nothing, crash and burn type of approach.  This is where I need help and to understand my triggers.

    I need to take a leaf from your book BlueRay and accept I need to be more of a tortoise, rather than trying to be a hare that wins the race.  We have to stay strong and keep plodding on at a sustainable pace.

  • I totally identify with everything you said Starbuck. I’m 50 and only just getting the help I need. If you told me even a couple of years ago that I would be getting help from a disability group or the local social services, where I worked as a social worker, I would have thought you were mad. 

    I have never thought of myself as disabled, and we’re not, but we are in terms of society and we are certainly deserving of help and support so we have to kind of get into that mindset, to some degree, in order to get the help we need. 

    A common trait of autism is that we have great difficulty in asking for help. And as for your sensitive to light not being documented, that’s bullshit. I was only diagnosed in October and since then, I have learned way more about my struggles, that weren’t even mentioned in the diagnostic report. For example, avoidance is huge for me and I’m starting to notice when it’s worse, what triggers it and what helps etc. The new care acts, which trumps the equality act in many ways, states that people no longer even need a diagnosis, but instead just have to show how they are affected. The disability rights groups or advocates will help you make sense of the situation and inform you of your legal rights etc. You will feel less alone with it, which is in itself priceless. 

    When I first called the disability group, out of sheer desperation, I thought I was going to lose my home and I know that you understand what that means, I got so much out of that call. The woman on the end of the phone understood me completely and gave me confidence that I was entitled to support and that’s when I started to think of myself as disabled, in relation to the social model of disability. 

    I can honestly tell you that the laws can be used to benefit both parties, the local authorities and the individuals and I always used it to help my clients so I knew I could use it to help me. It was only 5 weeks after getting my diagnosis that I got the help I’m now getting. It’s not perfect but I feel supported. I no longer feel alone and it’s actually creating a purpose in me, to work for and help others in this situation. My business ideas and my whole outlook on life is changing, since I began to admit and accept that according to the social model of disability, I am disabled and therefore protected in law. And the autism act states that we must not only be accepted but celebrated, and I’m going to hold them up to that. You’re not alone. I identify with you completely. 

  • Thank you for the valuable post Trainspotter.  I struggle with all the difficulties you list above, with certain social situations, change of routine, noise disruption and fixation being the biggest factors.  I have spent many years perfecting my social interaction and working on my body language to the point I can pass as being a quirky NT, but it does take it's toll on me.

    I have seen Occupational Health twice now through work, and little has come of it if I am honest.  I also found the first meeting was slightly insulting as I was told I don't look or act autistic, so your suggestion to get in touch with Access to Work is a valid point and something I am looking into.  The information you have provided will be invaluable and I am going to spend some time reading through it all in detail.  Work have accepted that I have issues, but they only recognise it so far as the shutdowns as they are very 'real' for my colleagues in that they can see and experience that first hand.  The other challenges that I battle with daily are my battles and mine alone, so hard to explain and get others to understand - especially as I am useless at explaining such things verbally.

    I'm fortunate in that I haven't had a serious meltdown for about 8 years now.  I can feel them brewing, but have become better at controlling them and realising when I need to step back and calm myself.  Just need to do the same with the shutdowns now as originally, shutdowns would manifest following a meltdown or would occur a short while afterwards.

    Again thank you for the information - you clearly know your stuff!

  • I found that too. They didn't do anything big (I'm sure they would also not have a budget for it) but they were the only people that didn't come with their shelf of "solutions" to get annoyed if I didn't think they fitted me at all. Someone put quite some effort into getting me in touch with some real person diagnosed with ASD and I'm grateful for this. I had said many times and to various people before that this would probably be helpful but either they simply ignored this or it was just not what they offered or they couldn't do it because they have to protect their clients. The thing is, I think we both benefited from it when it happened and it didn't even cost anyone much. Guess it just takes one person to get a little enthusiastic about it, but it seems in many places enthusiasm isn't particularly appreciated in people working there and if someone has too much of it it gets ripped out of them.