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

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.

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.

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