Managing Shutdowns

I think I got an insight into me shutting down this week, and so maybe some insight into managing them. Shutdowns are in the top 3 problems for me.

For the past 2-3 months I've wanted to say thank you to my running coach for being so kind and generous, and how it's impacted me. It's easy to say thanks for the favour, but I wanted to get at the fact it's rare people do favours for me and very hard for me to accept them, but I had accepted it and that was a break in my pattern. I've struggled to say this. It's not a shutdown, but maybe the thin edge of the dynamic.

This week I again wanted to try and say thanks but time was slipping away. I realised I was going to fail again. I realised I'd just have to blurt stuff. I did, it came out, it was a bit messy, I didn't fully communicate it or him get it, but we got say 60% of the exchange done.

I reealised afterwards that there's a parallel with my shutdowns, I'm paralysed by not knowing what to say. So maybe saying anything will help me not shutdown. 

ElephantInTheRoom said:

Like you say...having objectives are great...."what needs to be achieved, why, and when for"

I am rather the opposite to this. Leave me to do something and I get more done, give me a to do by date . . . and . . . things . . . . just grind . . . . . to . . . a . . . . halt, in most cases. I used to have so much trouble with late library book fines, so now I buy books and read them normally from cover to cover in no time at all, and I get to keep them too! Although the marvellous magical book rustler does have its way, especially today actually, bless it.

I agree that the Equality Act should include Autism as a disability.  Myself, I am getting some 'reasonable adjustments' at work and this is welcome.

Unfortunately, it does not go far enough.  As Autism is 'invisible', many people refuse to acknowledge it is causing a problem.  Even a lot of autistic people refuse to concede they are 'disabled'.  To be covered in the workplace, one must prove that it has a 'significant effect' on day to day living.  Now this should be easy, unfortunately there is a lot of opinion as to what is or what is not a significant effect.

Then there is the problem of diagnosis.  Even when diagnosed a lot of people think that so and so's autism is only mild or is not severe enough.  Myself I had great difficulty at work, I was referred to occupational health on three occasions before they finally conceded I had problems.  And problems I do have as a neurotypical would consider although I would not think they are a problem for me.  They do affect my everyday life, I will not go out to a meal for instance and do not socialise with others, I am quite happy to be on my own. I have a very restricted diet due to having oversensitive smell and taste and am apt to tripping over my feet and getting distracted easily as well as being able to concentrate when left alone.  There is also the chronic depression and anxiety, the complete inability to change the way I do things, the knowledge that I am always right .....(!)  the difficulty I have with the way neurotypicals communicate and various other attributes I have.  But most people just think of me as 'strange'  I have 'come out' at work, I get an immense amounnt of support from colleagues, but to managers I am just that awkward blighter who wants to get his own way.

The law unfortunately does not seem to prevent others from wanting to change you from thinking that you can be changed.  From thinking that there ought to be a cure, from 'feeling sorry' for you, from looking for loopholes in the equality act (and the eqality act is full of holes that a manager will try to use as a way to get rid of someone, I am sure that was it not for my support worker at work that I would have been dismissed on the grounds of incapability or insubordination.

And for the equality act to be successful others must know of your condition.  This is easy at work.  However, when we have a 'misunderstanding' somewhere that others don't know of our condition, we have to explain it.  Our condition is not visible in the same way as someone who is confined to a wheelchair, is blind, or is without one or more limbs.  And if caught out somewhere having a misunderstanding to say we are autistic as the reason unfortunately seems like an excuse for bad behaviour to others.

So yes, the Equallty act is a help.  It does not however prevent ignorance.

o

“Autism is a lifelong developmental disability that affects how a person communicates with, and relates to, other people. It also affects how they make sense of the world around them.”

So the NAS considers autism a disability, they are at least part-funded by the Government and are universally accepted as the national autism charity in the UK.

www.gov.uk/.../disability.pdf see the section on “What is a Disability” on page 4, where autism is included.

But also under the Legal framework you cannot discriminate against disability either.....does this include Autism under the Equality Act of 2010. 

"The Equality Act 2010 describes a disabled person as someone who has:

“a physical or mental impairment which has a substantial and long-term adverse effect on his or her ability to carry out normal day-to-day activities.”

Mental impairments include autism and most autistic people are likely to fit this description, but you do not have to have a diagnosis to be considered a disabled person."

There are many instances of a repressed minority being bullied by a stronger majority.  And it is basically a form of slavery.  Not so long ago it was very acceptable to discriminate against women, and even more recently against peoples sexuality.  Nowadays, these are both illegal and subject to the force of the law.

These things usually happen slowly.  It took a long while from the Tolpuddle Martyrs being transported for requesting better conditions to trade unions being recognised as a legitimate body, it took a long time for slavery to be abolished (although it was only really toned down since working classes are still beholden to those with power) a long time to get universal suffrage and a long time to get anything approaching equality regarding sex, age, religion, colour etc.

What we do have to do is make our voice heard.  We are vastly outnumbered by neurotypicals, most NTs not understanding the condition and others thinking with a bit of 'counselling' Autism can be 'cured'.  NTs that accept our condition often think that we can be 'normal' if 'we try a bit harder'.  Many autistic people have great trouble expressing themselves, even though there may be great intelligence within.  After all Stephen Hawking (I'm not suggesting he is autistic) has great problems in expressing himself due to his disability but there is a brain the size of a planet in him.  And we do not know what there is within a lot of autistic people if a way for them to express themselves cannot be found.

So we have to tackle it a bit at a time.  Firstly, acceptance as to what we are.  We are not a threat to other people, we just want to lead our lives in our own way.  Yes we do know there are rules, but unless the need for these rules is explained we can have difficulty in complying.  And then we must be allowed to get on with our lives in our own way,

We must get people in authority on our side.  Yes, we have examples of autistic people who have done all right for themselves.  We might use these examples to help explain.  We must not be afraid to call ourselves 'disabled' but this has to be explained we are disabled by the ways of society and not much in a medical sense.  We are wired differently, we think in a different way, we have capacity for great knowledge and great input and offer a different way of thinking that can be very useful.  And we are not having tantrums if we don't get our own way, we are having meltdowns and shutdowns because of overload, because of conflicts of information and these are noticeable in us because we react in different ways and find it more difficult to suppress, and the mere act of trying to suppress feelings leads to more anxiety with its attendant meltdown and shutdown.

We should take every opportunity of writing to the press and broadcasters of the problems we face and the way we would like to be treated.  We shoud lobby MPs, not just stay quiet and allow ourselves to be bullied and controlled. 

I know all this is difficut, that is why it will be a slow process.  But we will have to start somewhere. The revolution starts

Love it...particularly the last two lines...

but trainspotter...what do we do!

Since we are in poetic mood here, thought I'd share this one, a song written by Brian Bedford of acapella trio 'Artisan', and covered by numerous folk style groups.  I find this very true and I always think of this song when confonted by someone who wants to control me.

What's the Use of Wings?
(Brian Bedford)

 "I could have been a giant" said the bonsai tree
 "But someone bound my roots and held me down."
 "I could have reached the Heavens" said the snowy owl
 "But they clipped my wings and kept me on the ground."

 "I think I heard them tell me that they loved me
 That they'd care for me--without them I would die
 But what's the use of roots if you can't spread them?
 What's the use of wings if you can't fly?"

 "I could have been a singer" said the Myna bird
 "But they caged me and told me what to say."
 "I could have run forever" said the pony
 "But they bridled me and made me go their way."

 "I think I heard them tell me that they loved me
 That they'd care for me forever so it seems
 What's the use of voices without freedom?
 What's the use of living other's dreams?"

 Why do people cage the things they love the most?
 Is it simply that they fear to be alone?
 If you give you're love it's freedom, it will stay awhile
 If it leaves you, it was never yours to own

 "I could have found adventure" said the angelfish
 "Now my world's so small there's nowhere left to go."
 "I could have ruled a kingdom" said the lion
 "Now this land inside my head is all I know."

 "I think I heard them tell me that they loved me
 That they'd care for me, and tell me it's alright
 But what's the use of life without adventure?
 What's the use of strength if you can't fight?"

 Why do people cage the things they love the most?
 Is it simply that they fear to be alone?
 If you give you're love it's freedom, it will stay awhile
 If it leaves you, it was never yours to own

 "I know I heard them tell me that they loved me
 That they'd care for me, without them I would die

 But what's the use of roots if you can't spread them?
 What's the use of wings if you can't fly?"

Caged Bird
BY MAYA ANGELOU

A free bird leaps
on the back of the wind
and floats downstream
till the current ends
and dips his wing
in the orange sun rays
and dares to claim the sky.

But a bird that stalks
down his narrow cage
can seldom see through
his bars of rage
his wings are clipped and
his feet are tied
so he opens his throat to sing.

The caged bird sings
with a fearful trill
of things unknown
but longed for still
and his tune is heard
on the distant hill
for the caged bird
sings of freedom.

The free bird thinks of another breeze
and the trade winds soft through the sighing trees
and the fat worms waiting on a dawn bright lawn
and he names the sky his own

But a caged bird stands on the grave of dreams
his shadow shouts on a nightmare scream
his wings are clipped and his feet are tied
so he opens his throat to sing.

The caged bird sings
with a fearful trill
of things unknown
but longed for still
and his tune is heard
on the distant hill
for the caged bird
sings of freedom.

Ooooooh. The caged animal analogy certainly strikes a chord........totally.

i find that so many decisions and choices are taken away from me...to the extent that I can't do what I want to do or need to do on a daily basis, at home or at work.....too long in the cage gets me down and I crave some BIG space on a walk in the countryside, some quiet space I can crawl into and be totally undisturbed....or to try and reset my mindset with music.

life seems to be set in flight / fight mode.

in terms of work, my previous boss was really really good..you knew exactly what was needed to be done, she would back me up and support me and then give me the creative freedom to achieve it. Like you say...having objectives are great...."what needs to be achieved, why, and when for"

i like feedback in my work as welll....happy with criticism (constructive) or praise.....or I can feel quite lost.

Another thing I often liken myself to is that of is a caged animal.  We have got a lot more understanding these days of the results of putting animals into unnatural environments.  The animal when caged does not behave naturally.  It paces around, is obviously distressed and can get very bad tempered.  If animals must be held in captivity (and I do accept that a lot of zoological gardens do a good job in conservation such as Chester and Whipsnade) then the environment should create conditions that are as near as possible to the conditions they would find in their own natural homes.

Yet we treat people in this manner and expect them to behave rationally and normally.by neurotypical standards.  The work environment in  by my case seems like a cage.  I do not feel as if I can act naturally and this obviously has repercussions both on me and others.  The whole structure of a work environment is unnatural.  It has come about from the need to control others.  I know I am totally unmanageable, that I work better when left to my own devices, that if I am given an objective rather than an instruction I will work far better.  But this does not fit in with the neurotylipical world.

I totally agree with your statement regarding the demands of modern society......everything seems to needed to completed immediately...that societal urge for immediacy is potentially damaging and squeezes out opportunity for reflection.....and coercively demands that we perform to the same drum beat even though it totally negates the fact that we all engage and process the word in different ways.....it also demeans and disregards that other work strategies can be just as effective, if not more so.

we race from one demand and experience to another..,and then crumble like a human buckeroo.

I always liken a shutdown to someone with a garden that has got out of control.  There comes a point where it gets more out of control no matter how much effort was put in, there are just not enough hours in the day to get it back in order.  So what then happens is that nothing is done.  The only real answer is to start everything again, clear every thing and go back to square one.

This to me is my shutdown.  So many demands put on me, when I know I should finish a job off but then am told to do something else.  So evenutally, the work has built up ... and no matter what it gets worse.  So evenutally, I get to the point I do nothing.  Shutdown and not only in the set task but in other parts of my life as well, even things I get enjoyment from.  And to get it back into order is very difficult, not an easy process.  Too many demands, and not feeling in control causes overload.  Overload means anxiety.  Anxiety causes meltdown and shutdown, not necessarily in that order.  So for want of ever more being required means that the result in the end is nothing is done.

Managers at work tend to think this is something I am doing on purpose.  Yet it is a problem that is caused by their ever increasing demands over things that I am not allowed my control over.  Managers seem incapable of listening, usually they think there i some sort of training that can make everything better.  They seem to think that counselling is the answer to anxiety, rather than removing the cause of the anxiety.  Problems are created in the modern way of living by having too many conflicting demands, too many officials, not enough understanding and too much contol by others.

I have said before on the forums here that problems for autistic people are often caused by the demands of society.  I can certainly work in my own way far more efficiently.  Being Autistic I work by the 'division of labout' method, it is far more efficient.  And unfortunately many managers, especially in the service industry do not understand this.

What a magnificent post.

To be honest, it was all going huge-umma-flip, and people were doing the very best they could none the less, even  a tiny bit ~ but bless her, her mother injured her neck recently and is now paralysed from the neck down.

Having a parent become as such or in any way seriously injured is for most children (younger or older) incredibly distressing, along with mountain loads of challenging as carer roles suddenly reverse, and parental reassurance shortages just make things even worse ~ so expecting hostile outbursts is pretty much the done thing really.

But bless you how many times over I do not think can be counted, you held it together like an industrial diamond in terms of reasonable behaviour.  

I think maybe the idea of a secure detached house would be so many people's dream, autistic or not, but that kind of alone/do it on your own terms space is very far from most people's reality sadly.  Is there any part of you that wishes you could 'join in' more, or are you completely at peace like this?

Not radical at all..

i tend to manage my days like that too....i hover around at home getting things done and if I need to go out or interact with others it can be a struggle of will to find the best part of the day to do that and then also planning closed self time afterwards so I can compose myself and recover.

I'm new to these forums but already learning a lot. I was aware of "meltdowns", which I experience whenever I have to spend more than an hour or two in other people's company. (It's probably no more pleasant for the other people than it is for me.) Googling "shutdown" suggests that it's my usual state, and has been so since early childhood, i.e. for fifty years. Living alone in a detached house, I have the pleasure of not being required to "recover" from my "shutdowns". When I feel ready to "resurface" from them, I go out and weed my front garden and comment on the weather to passers-by. After an hour or two of this, I go back indoors and "shut down" again.

Every autistic man or woman should be given a detached house to live in in their natural "shutdown" state, from which they can emerge to chat to passers-by if and only if they're in the mood for it.

Apologies if this is too radical.

You can only delete your own postings though...before you get creative! Lol

If you click on the 'more' button...you can choose to edit your comments or deleted them....you can only delete them though if no one has replied to them :)