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.

  • Welcome back, we haven't heard from you for sometime.

    And welcome to the club.  I'm also facing homelessness in the near future. 

    I'm getting plenty of jobs interviews but that's it.  

  • Hi Robert123,

    I haven't been on the forums as much as I have been trying to focus on getting well ready for my return to work.  I'm sorry to hear things haven't improved for you.  :-(

    It's not a nice situation to be in and I wish I had a magic wand to make everything wonderful.  If homelessness is a real threat and you don't own or have a mortgage on your home, I would suggest getting in touch with the council to see what emergency accommodation is available - there is normally a waiting list unless you are deemed as being vulnerable, although I would argue everyone is who is facing this type of situation.  If you do own or have a mortgage on your home then it's very difficult as you are not seen as being viable for support unless you are actually homeless.

    It seems such a backward way of working to me, but what do I know.

    I hope something comes through for you soon.

  • I know that if I had had suppprt in my previous jobs, I would most likely still be working there now. You are entitled to support, by law. We might not always know what support we need, when we first start thinking about this but having the opportunity to sit down with someone from the company, who could help you work out what support would be most helpful to you, would be a start. You might be high functioning but that’s not an excuse for employers to not give you suppprt. 

    It might be helpful for you to speak to an independent advocate or someone from a disability group. You are entitled, by law, to be provided with access to an independent advocate and they will at least help you get more clarity around the situation.

    It seems that many of us are in danger of being made homeless. I’m currently on a suspended repossession order and managing my money as best I can while I’m out of work. 

    Don’t be hard on yourself, you don’t need that, you need to be kind to yourself. You’re doing the very best you can under extremely difficult circumstances. There are people out there who can help you. You can contact your local social services and ask for the number of a local independent advocacy service or ask for a referral or you can google it. Disability rights groups are very helpful. You deserve help and support as much as anyone and the risks of not getting the support can be dire. And don’t let anyone tell you you’re high functioning, it’s a confusing term that is really only meant to be for the benefit of the health professionals. Take good care of yourself. 

  • I work for a very bad employer and they say they want to support at the same time as threatening with capability proceedings (unfounded).

    Shutdown is one of those things that happen to autistic people which are not understood at all by neurotypicals. 

    Don't think because you are so-called high functioning you don't qualify for support.  I don't know your circumstances, but what did your diagnosis say your difficulties were if you are diagnosed?.  You obviously have something that led you or, if diagosed, your psychologist/psychiatrist to the conclusion you were autistic.  I have said before that I consider the labels high and low functioning, mild and severe autism as misleading and unhelpful.  High functioning/mild autistic people have their needs not catered for, low functioning/severe autistic people have their abilities undervalued.

    Access to work were an initial great help to me.  As well as their usual function of suggesting physical things that may help in the workplace, they also can suggest what reasonable adjustments are needed for you in the workplace.  And it has to be borne in mind that there has not been a case where their recommendations have been overturned in an industrial tribunal.  They can also give a grant to pay in full for training of workplace colleagues to explain how autism affects you, and also for a support worker (however much you feel you don't need one, your support worker can help explain things to your employer when you do have difficulties such as meltdown/shutdown.  The purpose of Access to Work is to keep you in a job so they will be fully on your side, I know it was all a great help to me. 

    Make sure your employer is aware you have an impairment as defined in the Equality Act - once again this will be a lot easier with Access to Work.  Have you a local autism charity where you live who provide help under Access to Work?  To refer to Access to Work, just go to the website and there is an online form.  It is quite quick to get them to provide you with the help you need and it could save your job.  And you do not have to be diagnosed to seek their help.

  • That’s good to know Trainspotter. I know when I was working as a social worker it would have been different if I had had support. However, I wasn’t even thinking about autism at that time. It wasn’t on the radar. Now I intend to work for myself and I’m glad things turned out the way they did, but I’m equally glad that access to work are doing such a great job. It’s vital that we get support and I would have benefited from a support worker to speak to my boss on days I just couldn’t go to work as well as in other ways. Just because we ‘can’ perform well in our work, it doesn’t mean we don’t need support. We can do it but at a high cost. We very much deserve support, and we’re entitled to it by law. 


  • 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.


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

    I had to Learn how to recognise and deal with them at progressively earlier stages; as shut-downs for me often involve having seizures too, and reducing the causalities and extents of the shuts-downs ~ has reduced the intensity of the seizures, over the decades. I used to have the full on body bucklers but now I just have the mind muckers, so a vast improvement  from getting a battered mind 'and' a battered body.

    I have more or less worked out how much stress and what types of stress result in what types of problems, and I keep them more to particular days and times in the week and less so to others. Not always successfully mind you, but I have got a general routine on the go and I am working it sort of more than it is working me these days. Yay!


    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.

    May I suggest getting all Stoic and matter-of-fact 'factor ten' about it all as 'soon' as possible?

    Resist and resist and resist worrying about things related to having shutdowns, resist worrying about them as much as possible as it is more effective and less draining in the long term, and involves less intense shut downs. So rather than worrying about them, be concerned about them instead, and get more to observe and pay attention to the particularities involved with when they are coming on and better as such managing them.

    What for instance did you notice about the days leading up to the shut-down? What sorts of feelings and thoughts were you having  during them that could be indicators that the shut-down was on its way? And even if you are not sure or do not know ~ guess, and treat it all as a process of elimination. Learn from your mistakes and appreciate them as retakes rather than giving yourself grief for being a failure or worrying yourself out of being concerned about them.

    Going into negativity nosedives will drag you down, so hold you up instead, and care for you, for that is befitting, and you are way more worth it anyway. Forget not that perhaps?


  • I know that if I had had suppprt in my previous jobs, I would most likely still be working there now. You are entitled to support, by law. We might not always know what support we need, when we first start thinking about this but having the opportunity to sit down with someone from the company, who could help you work out what support would be most helpful to you, would be a start. You might be high functioning but that’s not an excuse for employers to not give you suppprt. 

    Thanks

    I have had two meetings with Occupational Health, which was arranged by my employer.  The second meeting confirmed that they had advised my employer of what they needed to do, but have failed to implement anything.  They also stated that they are not obliged to cater for cater for sensory issues as my diagnosis said I have sensitivities to noise (light wasn't included for some reason), but it didn't specifically state sensory processing disorder and they need this to be clarified by a professional.  I still haven't seen the report following that second meeting.

    The office that I work in is continually changing and there will be a big move round in the coming weeks, where I will be moved to a new desk in the main office.  The new layout means there are no quiet places to work anymore and although they are moving my position in the office, it doesn't actually change anything.  The idea originally was to place me somewhere that may be a bit quieter, but that is no longer possible due to the amount of people that are being crammed into one office.

    Occupational Health also asked me what they thought they could do to help and this did catch me off guard as I am still trying to figure things out for myself.  I stated somewhere quiet to work when everything gets too noisy or busy would be helpful, as well as forewarning where possible on changes to my work environment or projects I am working on. I think my employers still think that having a diagnosis of ASD means you will have some treatment and then you will be cured and you can crack on as normal.  They don't seem to recognise that this isn't going away.

    It might be helpful for you to speak to an independent advocate or someone from a disability group. You are entitled, by law, to be provided with access to an independent advocate and they will at least help you get more clarity around the situation.

    I guess up until now I have never considered myself disabled (struggling continuously yes, and I am have come some croppers as a result), so have never though that I qualify for any help or access to support from disability groups.  I have struggled with the issues all my life, but have only had my diagnosis for a year and previous to that I have been fobbed off by doctors and fed various pills, whilst being told to pull myself together and get on with it.  So to summarise I have been told for most of my life to get a grip and move on.  Although I know I am not coping and need help, to actually acknowledge that I qualify for it after being told for so long that I don't, is difficult.

    It seems that many of us are in danger of being made homeless. I’m currently on a suspended repossession order and managing my money as best I can while I’m out of work. 

    It's a horrible situation to have to go through and I wouldn't wish it on anyone.  I didn't know how to ask for help when I got myself into similar difficulties in my younger years, but it sounds like you have at least taken the first step.  For me my home is everything as it's the one thing I have control of and can manage to my needs.  I now know that when you are in difficulties, informing the bank as soon as possible to put measures in place is key to stop things getting out of hand.  I hope the situation improves for you soon.

    Don’t be hard on yourself, you don’t need that, you need to be kind to yourself. You’re doing the very best you can under extremely difficult circumstances. There are people out there who can help you. You can contact your local social services and ask for the number of a local independent advocacy service or ask for a referral or you can google it. Disability rights groups are very helpful. You deserve help and support as much as anyone and the risks of not getting the support can be dire. And don’t let anyone tell you you’re high functioning, it’s a confusing term that is really only meant to be for the benefit of the health professionals. Take good care of yourself. 

    Again, thank you for your support.  At the moment, feeling isolated and not being able to explain to anyone how I feel or what I'm going through makes it more frustrating and like I am letting everyone down.  I will take your advice on independent advocacy and disability groups as like I mentioned above, I never thought I qualified for them.  The hardest challenge is trying to explain to people that some days I can hold it together and other days I am constantly falling apart.  People use the good days as a benchmark and wonder why you fail to pull it together when you are struggling to hit that benchmark repeatedly.  

  • Make sure your employer is aware you have an impairment as defined in the Equality Act - once again this will be a lot easier with Access to Work.  Have you a local autism charity where you live who provide help under Access to Work?  To refer to Access to Work, just go to the website and there is an online form.  It is quite quick to get them to provide you with the help you need and it could save your job.  And you do not have to be diagnosed to seek their help.

    I think they are aware of the fact it falls under the Equality Act now, but when I first disclosed my diagnosis, I was told I was too high functioning to fall under the Equality Act - I questioned this at the time as that statement alone suggests that the very Equality Act is discriminating in that case!

    I shall look into Access to Work then to see what my options are.  Unfortunately, I live in an area that has little or no support for adults with ASD.  My GP has also looked into this and is equally frustrated with the lack of services available.  He referred me to mental health services and disability support groups and my referral has now been rejected three times as they have stated they don't deal with ASD in adults or only adults that are deemed low-functioning.  My GP agrees that it is a farce and they are letting numerous people down as a result.  He has resorted to referring me back to the psychiatrist that did my initial diagnosis as he is at a loss of who else he can turn to.

    I am now waiting on a response from said psychiatrist to see if there are any support groups that could help me as well as provide a clearer explanation of my sensory processing issues.