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“Please understand me – my walls came falling down” – autistic shutdown – what does it mean?

by | Nov 17, 2017 | News & Views | 8 comments

“Please understand me – my walls came falling down”

So, a common question asked of someone who is autistic is: what is the difference between meltdown, shutdown and even burnout? This particular blog article will focus on autistic shutdown.

Firstly, it’s really important to explain that because every autistic person is an individual, they will experience meltdown, shutdown and autistic burnout in different ways.

Too many apps or browsers or programs open

Shutdown, for someone who’s autistic, can be described as feeling like a fairly old computer that’s not equipped with all the modern update software – it simply has too many apps or browsers or programs open. Autistic shutdown is when you need to start closing down your programs to conserve energy, and generally only the most important program (which if you are a mammal, will be the ‘parent program’), is left on. Everything else closes down to a degree, just to conserve your own battery life – as if you keep going at your current level, you will certainly head for an autistic burnout, which we will talk more about elsewhere on Spectra.blog.

Being in autistic shutdown is self preservation mode – it is a mode that happens with your consent to a degree, as it is something that needs to happen to re-calibrate your body.

Signs of shutdown (for the author of this piece anyway) would include one’s voice getting increasingly monotone; finding it harder to make eye contact with people; throat feeling tight when speaking; general lethargy; becoming panicky, anxious or grumpy; and finding it harder to smile and express emotion.

The glass box

But the overriding feeling of shutdown for an autistic adult or child is one of existing in a glass box – you are one step away from everyone, looking out of your box; if someone asks you how you are feeling, the truthful answer is probably: “I am not.” Because your feelings are one of the programs that have been temporarily turned off, while your body re-sets.

Autistic shutdown can be spotted if you (as the autistic person) know your individual signs and triggers; or if you recognise them in your loved one. Shutdown can last any length of time; it really depends on how you are feeling and what level of self-care you are able to administer, and what challenges are in your life. Coming out of it might simply involve a good chat with a loved one, or removal of some external stress, some good rest, or simply some time-out; e.g. time away from external stimuli, people and interaction. Maybe some ‘duvet days’ in bed. Don’t underestimate the importance of recovery – if a person had a migraine, they’d probably retreat to bed to recover – and this is not dissimilar.

“Shutdowns are a person’s response to reaching crisis point”

The UK’s Autism West Midlands organisation describes autistic shutdown as follows: “During shutdown, a person may either partially or completely withdraw from the world around them. They may not respond to communication anymore, retreat to their room or lie down on the floor. They may also no longer be able to move from the situation they are in, no matter what it is (for example, a shopping centre or a classroom). Shutdowns are a person’s response to reaching crisis point.” Read more HERE.

A little disclaimer – here at Spectra.blog we don’t claim to be experts about Autism; the information we post here is based purely on our own exposure and experiences.

It’s a cliché perhaps, but many autists love music, for many reasons. What better way to deal with life than to escape within a beautiful song? In the words of Palmer and Kraus’ beautiful ‘Please Read The Letter’: “Please understand me – my walls came falling down. There’s nothing here that’s left for you. But check with lost and found.”

 

8 Comments

  1. imelda mc conville

    Oh my goodness!! I have now found some answers about my 24 yr old daughter. She was diagnosed with a Specific language disorder when she was a child but I’ve always suspected she had some degree of autism. She was let down with her diagnosis. I never gave up on her & made her work hard & she is now a classroom assistant. She still struggles with her own feelings & also with how to deal with problems…she totally SHUTS DOWN and wont speak.

    Reply
    • admin

      Thank you, ‘I’! If it helps, shutdown somehow closes down the communication pathways – so it is maybe a case of ‘can’t speak’. Or ‘can’t process and get across what I am feeling’. Sometimes it helps to write things down (as the autist), especially if the problems are too overwhelming. Hoping she can work out her issues – it’s certainly a long journey of understanding! Glad you found the article thought provoking. She’s lucky to have such an involved and concerned parent!

      Reply
  2. Fiona Halloran

    Hi there, I have a 28 year old son who was diagnosed with dyslexia and adhd when he was 12/13 as he was struggling so much at school with inability to focus and function. At the the time the Educational Psychologist said he was ‘on the autistic spectrum’ He was subsequently given some extra help, which did make a difference as he focused on his strength which was sport. I feel my son was hugely let down by the education system but despite this he has continually tried to better his education and qualifications in sport and coaching, but sadly taking countless ‘knockbacks’ along the way, from work colloeagues, managers and sometimes friends! usually stemmed from his social awkwardness and being ‘different’ He tries so hard to fit in with what he sees as the ‘norm’ in society in an attempt to achieve his goals and currently he is trying to complete a course at Uni in Wales.
    He has come home this Christmas (I don’t even know how he managed to get himself home) in such a bad way. We have all been so worried for him. I have just read your blog and I think he is in ‘shutdown’. I had never heard if this before, but he seems unable to function, not even basic daily tasks, finding washing and dressing very hard, taking hours to do. His thought processes are being interrupted and he cannot think what to do next from moment to moment (like he has regressed to being a small child) He goes into frequent trances, sometimes not hearing, when he does answer, his voice is monotone. Sometimes he just stands or sits in one position, not able to move for hours and struggles to even eat a meal. He is also experiencing some physical symptoms, like shaking, sweating and pins and needles in his hands and feet which are always cold. He asked for help, so we took him to be checked out and Dr’s say physically there us nothing wrong. We are not sure now how best to help him without making the situation worse. I feel he has been under extreme pressure at Uni for months and just needs to completely rest and recharge at home being supported, until he recovers? Is there anything else we can do to help him? Your input would be greatly appreciated. Many thanks for reading this.

    Reply
    • admin

      Thanks Fiona. Fifteen years ago not all clinicians and educators were as ‘well-versed’ as they are today – and although the Ed-Psych suggested ASD, was your son actually given a formal diagnosis, e.g. in writing? It would be useful to have, as this could unlock more assistance with his Uni course, in terms of learning styles etc.
      Here at Spectra.blog we’re not medical experts (or experts of any kind, ha ha!) of course, however it does sound as if he may be experiencing signs of autistic shutdown.
      Have a look at these sites –
      https://everydayaspie.wordpress.com/2017/02/05/574/
      https://autismawarenesscentre.com/shutdowns-stress-autism/
      This site has great tips for helping the individual – https://www.autismwestmidlands.org.uk/asset/2017/11/Meltdown_shutdown.pdf
      In our own experience, returning to Uni in his state may not be the best option, as you’ve indicated – “I feel he has been under extreme pressure at Uni for months and just needs to completely rest and recharge at home being supported, until he recovers?” This sounds like the perfect way forward!
      Is there a mentor or tutor at Uni who could assist? Maybe suggest ways of working out solutions?
      Hopefully after some rest and recuperation, and a reduction of stresses / stressors, he may be able to gather his thoughts and read some info on shutdown himself?
      Once he realises it is a temporary reaction to the environment – and that he’s not ill or broken – hopefully he can recalibrate.
      Sending many good wishes Fiona.
      SB team

      Reply
    • Mountain Goat

      I have experienced this a few times and to me it is a burnout. I have had partial shutdowns and shutdowns all my life (Though only recently I know what they were.. Long story!) but I have had several burnouts since 2007 onwards… Each one hit me harder then the one before, and by the pattern they have had, if I have another I risk ending up physically dissabled.
      Through experience, burnouts take a long time to recover from and each time I thought I was fully recovered, I tried working again (Very low hours part time temporary job) I would hit burnout again. Last September I hit the worst one I had and had a very similar experience to what you describe your son has had, which has left me in quite a mess. When I was driving I would get lost not knowing what gear to change next… I could not walk too far and I found I was “Glitching” between my masked state and an unmasked state (Where I felt almost neaked and I was very child like… As if I was about five to six years old).
      Many of the other things you describe I also experienced. It felt a bit like, or close to a mental breakdown. For a few weeks to a month I felt fragile and vunerable. It is now April 2020 and I am still not right. I have not been able to work etc. (Even before due to past burnouts I could only take low hour part time work on a temporary basis).

      So what I will say it that he should take it easy. Give up the college for now. Go into self preservation mode. He should do all he can to avoid stress. And when he thinks he has recovered and feels right again… Double the time you have had to reach that point before going back to the challenges of college or work, as I found that it takes ages to reach the feeling of being right again, and you need at least double this time to really recover.
      I know this sounds like bad news, but one really needs the recovery time.
      I have in the past lost years of national insurance etc due to not being able to work and not feeling up to signing on etc. All due to burnout. I didn’t go to doctors as I had been going since a teenager to try to find out why I kept experiencing what I now know to be shutdowns, and after years of tests I was never able to find out what it was or how to describe it to doctors in ways they understood, so when I reached burnout, I just could not cope with trying to go to doctors to describe how I felt. I was in a right mess!

      Reply
      • admin

        Thank you so much for your kind and insightful words.

        Reply
  3. Kay

    Hi, I really need help with understanding my fiance’s Asperger’s shutdown. Since the lockdown started last April, he have been hallucinated and saw things attacking him and as May arrived, he was completely shutting down. He doesn’t talk, doesn’t sleep, doesn’t shower. He have been let down by the NHS psychiatric unit several times throughout these lockdowns and he have been discharged and released from the hospital without any supervision and eventually police found him laid down on the street. The last horrible time he have been discharged without any guardian from the hospital, he have been found at a train station nearby his flat. He seems scared and empty.
    Can Asperger’s shutdown last for months? How do we help to treat it?

    I can’t do anything as I’m in a different country and not in the UK with him. He have nobody with him except the carers. He’s aggressive towards his only family members. And living alone before the he’s in shutdown mode.

    Can this condition be treated? I really need to find an answer. I really need to help him.

    Thank you!

    Reply
    • admin

      Hi Kay. So sorry to hear this.

      We aren’t medical professionals, so can’t give advice of course; however, those signs aren’t seemingly typical of an Aspergers diagnosis – the website ReThink Mental Illness – http://www.rethink.org – advises as follows – ‘To access treatment for psychosis, you usually need to have an assessment by a specialist mental health service, such as the Community Mental Health Team (CMHT). You should be offered medication and talking therapy to help with your experiences.’ The ReThink website has info on mental health services and peer support groups.

      Autistic people describe that their ‘shutdowns’ can last for a lengthy period, particularly if the circumstances and environments around them remain unchanged. But autism isn’t psychosis, nor is it a mental health condition – although anyone at a low point within their lives, whether autistic or not, could presumably be more prone to mental ill-health. Perhaps his shutdown has allowed mental ill-health to surface or be triggered?

      It seems imperative that his local carers or family members secure assistance from the Community Mental Health Team – the http://www.rethink.org website can help with signposting to suitable areas of assistance and advice. Any professionals should be aware of his autism diagnosis, and ideally should be knowledgeable about autism, and how autistic individuals are affected. Hopefully the CMHT can advise on whether medications and talking therapy could work for him.

      You ask whether this condition can be treated, and in terms of his autism, there aren’t ‘treatments’, as autism is widely considered to be a neurotype; however the mental ill-health he’s experiencing can be treated by a relevant professional, and some of the co-existing conditions that autistic people may have, eg depression, anxiety or other issues, can be treated, again by a relevant professional. But Aspergers itself isn’t something that could be ‘treated’, as it isn’t an illness.

      Good luck to you and your partner Kay.

      Reply

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