My experience of shut-down - does anyone else experience the same?

thank you so much for all that imfomation.  its helped me so much as have now been able to show details to my family so they can understand a bit better what I go through. I've never been able to explain before and its reassuring that I'm not alone and its very common - No doctor or psychiatrist has ever known what it was that was going on in 35 years

all the best to you and may grateful thanks again

Clare

Hi Clare,

I am so glad you have posted this thread as I am experiencing a lot of shutdowns lately.  I was diagnosed nearly 12 months ago and didn't know that these episodes were linked to autism to start with (GP is still ruling other things out).

I had another one at work yesterday.  Looking back I think it had been building, I just hadn't noticed.  I had been hypersensitive to noises a couple of days previous and had been sleeping with ear plugs to help me sleep better.  In addition, I was finding that I was becoming more agitated with my partner and other things, as well as becoming more obsessive about things such as housework and how things are organised (this is normally something I take pleasure in).  So to cut a long story short, yesterday I awoke to feel very fatigued, like my body was made of lead.  My head was fuzzy and I couldn't think straight.  I had already had a couple of days off work last week and the previous week for hospital appointments, so I felt guilty about working from home and decided to go in and battle through it.  I felt spaced out on the way to work and when I greeted the first person in the office, what I meant to say came out all jumbled.  I had to try again to make sure my message was relayed properly.  Then I noticed I was slurring my words and saying words in a sentence the wrong way round.  My memory also suffers prior to a shutdown, where the same thing happened yesterday.  I can't remember names, places, words for certain objects, whether I have completed a task....normally my memory is the only thing that gets me by so this throws me off!

Then I before lunch I started to feel spaced out and not with it.  I put it down to needing food (I am sensitive to feeling hungry and not eating regularly) so went to the canteen to get lunch.  The noise in the canteen was overwhelming, so much so I had to leave.  Then I tried to run an errand within the premise, but the noise from a radio and the sun blaring down on me as I walked between buildings was just too much.  This is when I started to realise something was wrong and I went to find a dark empty office to compose myself.  It was at this point I just wanted to withdraw, not talk or see anyone.  After about 35 minutes, things seemed to improve, so in my usual stubborn way I convinced myself I had beat it and that I could carry on with work.  At my desk I slurred at some colleagues who told me to go home, but in reality I just wanted to be left alone.  It was then that my mind wouldn't focused, I kept spacing out and I started to feel really unwell.  I Skyped my boss to say I wasn't well and needed to go home and that's when it hit me like a brick!

I felt a wave come over me and realised I didn't feel in control of my body.  My limbs felt heavy and stiff and when my boss came over, I couldn't talk and he realised I was at crisis point.  He moved me to an office, but I felt faint and nearly dropped to the floor.  I sat on a chair and the lights seemed really bright, the air con sounded like it was in my head and I couldn't get my words out.  Luckily, my boss handled it well and helped to calm me, but from the outside it looks like I am having a stroke.

It takes about 40 minutes for me to be able to start talking slowly again and be able to process simple things.  I went home and went straight to bed as I felt like I had been hit by a bus and my head ached.

Light and noise was unbearable and I was very agitated.

Today I am fatigued and feel sensitive.  My boss has told me to rest, but the whole thing is becoming very frustrating.  Everyone keeps asking me what triggers them, but I don't know and I wish I had the answers.

Hi Clare,

The first thing to say is that you are not alone in having shut-downs like these, and I have them myself.  From what I have seen here and on other forums, shut-downs are almost as common for autistic people as the "explosive meltdowns" which are more often described as part of autism - I think shut-downs just get less attention from medical folk because they look less dramatic from the outside.

Shut-downs can take many forms, and each of us will experience them slightly differently, or have a different kind of shut-down at different times.  You might find the article at the following link helps you to understand what is happening when you shut down - <link> Guide to Shutdowns.

From your description, it sounds like you more often have "partial shutdowns", with the "paralysis" that you describe being an occasional "full shutdown".  This is similar to my experience.  With most shut-downs I remain able to get myself to a safe place, but I'm often unable to speak and/or unable to understand other people's speech.  However, if I can't easily escape from the situation, a full shut-down can follow, in which case I remain conscious, but completely unresponsive and unable to move or collect my thoughts.  Afterwards, I desperately feel the need to sleep, and it can sometimes take several hours to recover.

In my opinion, the most important thing to begin with is to work out exactly which things cause the stress which begins a shutdown, and to try to understand how much tolerance to those things you have.  There isn't always a single "trigger event" that causes a shutdown, it can sometimes be that things are slowly wearing us away until one last little tiny thing finally tips us over the edge.  Sometimes dealing with other people can be one of these "slow build up" stresses, which can lower our tolerance to any sensory issues that we have.  Other causes of stress in our lives, or even just a poor night's sleep, can also lower our tolerance.  A shut-down is much more likely if we go into a situation with our stress levels already sky-high to begin with.

For many autistic people, the link between our body and our mind is sometimes not too good.  This can mean that we easily miss the early warning signs that a shut-down is coming - we can get so focused on appearing "normal" to everyone else that we forget to read the sensations from our body that would tell us how stressed we are, or we might deliberately try to ignore them. As you say, once the shut-down begins, there is little that can be done until we recover naturally, so learning to spot the warning signs allows us to take action before that happens.

How to manage this so that it doesn't impair our lives so much will vary from person to person, but here are a few of the tactics which I use, which may give you some ideas to begin tackling your own shutdowns.

• Reducing sensory over-stimulation.  I am very sensitive to sound and noise.  If I can do what I need to do in a quieter place, this will help.  Otherwise, where appropriate, I might use earplugs or listen to something on headphones to block out the chaotic sounds from the world around me.
• Find a way to take breaks.  For example, if I go out to a pub or restaurant with people, I might pop outside for a few minutes every half hour or so, or even just to the toilets, so that I can get my breath back and lower my stress levels.
• Anxiety reduction.  Any of the usual treatments for stress and anxiety can be helpful.  This might be breathing exercises, meditation, or anti-anxiety medication from your doctor (beta-blockers might be a useful alternative to anti-depressants for some autistic people.)
• Exercise, sleep and diet.  As with any anxiety related problem, getting plenty of exercise, eating well, and good sleep will help to lower the "background" stress level, which can help us to be more tolerant of shut-down triggers.
• Social changes.  For example, when I go out with friends now, I always make sure in advance that I won't get "trapped" there - I check out all the options for escaping and going home early if I feel that I'm getting overwhelmed, and I let people know in advance that I might not be out all night, but that it's nothing personal if I do have to do that.  Making compromises like this is much better than losing friends by avoiding social occasions completely.  Simply knowing that I have an escape plan also helps to reduce stress.
• Understanding helpers.  I have one or two trusted friends who keep an eye out for my shut-down warning signs when I'm out - if they notice me "glazing over", they discreetly check how responsive I am if they speak to me, and if needs be accompany me to a quiet place for a breather.
• Preparation.  If you know that a potentially stressful event is coming up, take some time to prepare your "sanctuary" in advance, so that if you do need to bail out, you are assured of the rest that you need.  For example, I make sure that I have enough food in the house, so that I won't need to shop, and I'll try to keep the following day clear of social engagements so that I have clear time to pull myself together if I need it.

It may take some time to work out exactly what works for you, so be kind to yourself, and be sure to congratulate yourself for even the smallest improvements at first.  Learning to manage the problem by itself helps to lower stress levels, as it reduces the "fear of shut-downs" and gives a sense of being more in control, so each small improvement makes other improvement easier to gain.

You do need to be realistic that maybe not every single shut-down can be avoided - it still happens to me from time to time when circumstances are too unpredictable to respond in time.  But hopefully, by asking your question, you have set yourself on the road to some significant improvements.

Best wishes.