Bit of a ramble following another shutdown...

Oh, I agree completely with your comment DongFeng. I was an independent social worker, working in the local authorities and that’s exactly what it’s like, that’s probably why I was so impressed with the wellbeing team. I got my manager to agree for me to spend half a day with them once a week or with any of the other services, such as occupational therapists, the home care team etc! It’s like all the teams worked independently which is crazy, so I went out there and starting building relationships and more joint working and I really enjoyed going out with the wellbeing officers. Now I’m being supported by them!!! And I couldn’t be more grateful. Under the new care act, everyone is entitled to indecent advocacy, which the local authorities have to make available so that can also be a good starting point when looking for support. I never imagined I’d be getting support from the wellbeing team but there is no specific support (yet) for adults with autism. I say yet, because I intend to change that. 

That's wonderful to hear! More power to their elbow. Maybe "wellbeing team" is the magic phrase that Starbuck needs to use with the council?

My comment above, though written in terms of the services that Starbuck and Robert123 refer to, is a general critique on humanity's depressing tendency towards short-term thinking. Fire-fighting is everywhere these days, it seems. This is an inevitable consequence of letting "bean counters" run things without due regard to the dynamics of complex systems.

I’m currently being supported by the local authority wellbeing team. I was working in the service myself when I first heard about this team, who work with people with lesser needs to prevent them from getting worse and needing more services. I was impressed then and I’m impressed now and I’m pleased to say that they are continuing to grow and develop. 

This is a great conversation because this is where I’m at. I was talking to my wellbeing officer and said I was probably over thinking things, because I thought she thought I was going too deep into things. But this post has made me realise I’m doing the right thing. I don’t have any illusions about cutting out meltdowns or shutdowns forever but I at the very least want to prevent or minimise the length of the burnouts. This is where I’m at just now, and I think with burnouts, as with anything, prevention is better than the cure. 

Therefore, I would also strongly suggest getting as much support as you can, particularly through access to work as they will be a great help. I’m working on building up a daily/weekly routine, so it’s a great work in progress but I feel a lot better just starting this process. I wouldn’t have been able to do it without getting vulnerable and accepting help and the more help I receive, the more I realise how much I’ve needed it but always just kept soldiering on, minimising it all etc. And then this burnout where I’m so exhausted I couldn’t go out and carry on masking if I wanted to. But it’s had severe financial implications for me, it would have been better in many ways if I had got the help before it came to this. 

Thanks again Trainspotter. That is excellent information. Thanks for sharing it. It’s so difficult to know what support we would benefit from and it certainly isn’t for any manager to say whether we come under the equality act. This is such good info. 

I suspect they do realise, but are told to manage with a budget which is smaller than they would like.

That state of affairs forces them to enact triage, which predictably means they prioritise the most urgent and serious cases... which of course leads to a fire-fighting spiral, and increases the total amount of money required.

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.

Problem:

One urgent case does not receive the timely resolution it deserves, because some funds were diverted to preventative measures. The media and politicians latch on to the scandal, and insist that Something Must Be Done.

People Who Know Best insist that the enlightened individual dedicate all available funds to fire-fighting so that scandals are avoided (humanity in general is too stupid to realise that the very existence of fire fighting is itself a scandal). At least with fire-fighting, People Who Know Best can respond to any criticism by retorting that all funds are allocated to the most deserving cases...(!)

The problem with having to prove your disability is covered under the equality act is that it is something that you have to focus on the negative parts of your disability.  What you find difficulty with, not what you can do.  And these problems have to be 'substantial'. 

However, how they define 'substantial' may not be how you would define it.  You will probably have some substantial problems that you can think of straight away - such as do you suffer from social communication problems?  Do you have communication issues even if only when stressed?  Do you suffer from anxiety?  Is your mind sometimes in such a position that you concentrate on one thing and forget everything else?  Are you easily distracted by extraneous noise or smells?  Are you easily misunderstood and do you misunderstand others?  Have you thought you were doing something someone wanted you to do and then questioned for not doing what they meant, they thought you were being deliberately obtuse? 

Even things like so-called 'body language' put you at a disadvantage since if your 'body language' does not conform you will be misunderstood.  Do you have meltdown and shutdown (you have already suggested you do).  Meltdown and shutdown is something someone autistic has very little control over, someone neurotypical has a lot of control over it. 

Do you like doing things in the same way, like having a routine and get upset when this routine is disrupted?  Do you have problems picking up where you left off if interrupted?  Some of these things you only have to say you are affected, you do not have to provide proof. 

Your employer may refer you to your occupational health service for advice, in which case take any information you have about your autism with you, your diagnosis report, and preferably someone who can give you support.  My experience of occupational health services is they are not good and don't really understand autism.  Which is why you should contact Access to Work, they will support your side, occupational health is to support the employer.

There are two useful publications, one from the TUC and one from Unison.  The links are:

Proving disability and reasonable adjustments in the workplace.

Autism in the Workplace

Make sure you read the first part of the Proving disability document, not just the section on autism within it.  There are several relevant parts there that will provide guidance for you.  Of course, if you are a member of a Trade Union you can also seek their help (I am, by the way, a trade union representative).

Regarding workplace support, Access to Work will try to find this for you if you cannot find a local support group yourself, I know one of the companies who do the assessment for Access to Work use Remploy in the absence of other services,  but I don't know what expertise Remploy have in this or whether Remploy subcontract to another service or independent specialist counsellors for support with autism in workplace situations.  But something will be available to you.

Deepthought said:

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

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.  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.  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.

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.

Deepthought said:

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'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.

Deepthought said:

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!

That's reassuring to know as as I have mentioned previously, 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.  If you find you are struggling to manage them or you feel one building up, how to you tackle them?  Do you rest or preoccupy yourself with your interests?

Deepthought said:

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.

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 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.

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.  

Thanks for you help on the matter.

Trainspotter said:

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.

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 Former Member

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.  

Starbuck said:

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!

Starbuck said:

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?

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. 

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.

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. 

It's sad that it has to come to this.  I'm starting to come to the realisation I may need to put a Plan B in place to prepare for the instance that I lose my employment and have to carry on paying all my expenditures. 

I have always been a believer that prevention is better than cure, but I have found that most things in society are based on fire fighting approaches, where you are only deemed viable after you have failed and come down with a bump.  It would be nice if those who make said decisions on intervention and support realised that the amount of effort and resource required would be much less with earlier intervention, rather than waiting until it's at crisis point.

Last time I was in a crisis, the local council were useless.  

Their publicity material claims that they will help and negotiate to prevent problems becoming out of hand.

But when it comes down to it. They will only do something when problems have reached a crisis point and not before.

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.

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.