Words, sensory regulation and autistic meltdown.

June 5, 2017 § 11 Comments

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Selfie, taken at Oxford train station while texting Rhi, drinking flat white coffee and squinting at the camera in bright warm sunlight. By the time the train arrived ten minutes later a sudden cold wind had brought on numb fingers. 

Occasionally I read autistic blogs and the writing feels remote. Slowly I’m identifying a difficulty in matching words to experience. Meltdowns have been one such area of disconnect, but today, as I prepared to make an overnight journey, words and experience coalesced to bring a new understanding.

A brief essay on words (skip if you just want to read about the meltdown)

I mean words – what are they and where do they come from? I’ve previously described how writing feels like plucking words from the sky. I sense them rather than understand them in a precise manner. Sometimes I get the ‘right word’ but often I don’t, and I have to keep fishing in the clouds. Words are tricksy like that.

Blog posts often appear as shapes, but today I began with a strong impression of words  flapping pleasingly this way and that, like washing on a line just above my head.  And I wished I could press my face into a crisp bundle of newly washed and dried words, then lay them out in a straight line for the reader. Ta-daa! SO much brain work would be saved by such means.

But words are both like objects to me and frustratingly abstract. It’s a paradox which can frankly hold recognition in abeyance. How do you match experience to words when they are nothing like experience? Since diagnosis a year and two months ago, I’ve had to take it on trust that meltdowns are part of my experience too.

Meltdowns

So what do I experience?

In childhood ‘tantrums’ – were memorable. I gained infamy for my meltdowns, and earned the nick name ‘the earthquake’. But throwing myself around didn’t stand out so much when I was small – fast forward to my late teens and no-one outside my family would have recognised the former earthquake me as me.

Fast forward again to 2017. You’re so calm! people tend to say to me.

As I gradually learn more about myself I see that I do, of course, experience meltdown as a sudden crashing in of functional capacity.

It’s just that I learned to do it quietly – off camera. I never knew just why it should be so hard to get ready to get dressed sometimes, or simply pack for a short stay away from home? The reasons have eluded me until today. Texting my autistic friends revealed to me something I had never known before. My sensory issues are REAL and relatively common for autistics. Alterations in sensory perception can make the texture of almost any fabric an irritant. I can go through an entire wardrobe and find almost nothing my skin can tolerate once in a state of sensory deregulation.

And now that I have made this connection I see that while having a shower can be one of my favourite things, the after effects can be devastating in terms of sensory regulation, depending on air pressure and the temperature in the room. Changes in tolerance can be rapid allowing little time to catch up and react. Often such changes will be entirely unpredictable but at least a pattern is emerging.

I challenge anyone to try getting dressed when showering sets the entire surface of your skin crawling, and the soles of your feet morph from neutral to achy with a side order of grit between your toes. There are no socks on this planet that are right under such conditions. Even the trainers you’ve been wearing for months so that they follow the exact contours of your feet feel lumpy, off balance and just plain WRONG. Go on. Get dressed then. No?

Add little extra pressure –  like having to get dressed and catch a train when a minor heatwave just dissolved into a classic British all the weathers in one day  – with alternating sunshine and showers. That’ll be the reason you’re a raw nerve by the way, but you’ll find it hard to explain even to yourself how stressful adjusting to contrasting weather conditions can be. No matter! The train won’t wait…

And you can’t casually fling overnight stuff into a bag and go.  Hell no! You’ll need a suitcase of options (wot but you’re only going for one night! a helpful relative might say to spur you on.)  You’ll feel close to defeat. Oh, and you’re still not dressed.  But come on, think about today’s and tomorrow’s clothes while the ache in your bones and the ants on your skin gnaw at your dwindling ability to focus. Your brain registers that you can’t possibly know what to wear tomorrow as this could surely happen all over again.

Okay – can you pull it all together? Want to scream yet?

I’ve been here so many times before – not being able to dress myself (what!?) when sensory circumstances conspire – is a thing I’ve lived with for a lifetime.  But at last I begin to discern a pattern – this happens in certain weathers and/or when I have to plan for being away from base camp.

I now see that such crisis’ are the direct result of unreasonable pressures. It’s genuinely impossible to get dressed and pack clothing to accommodate an autistic sensory system while experiencing acute sensory deregulation!

A body which can’t automatically access self-regulation relies on its owner to drive on manual. This forms part of the extra work many autistics must carry out all day every day – many of us without realising it. Daily we micro-manage our bodies with our careful routines and intricate strategies. Time away from base camp requires planning and portable equipment. Acute sensory deregulation and the promise of variable conditions create a perfect storm and blocks functional capacity.

Who knew that this was so? Certainly no-one ever told me. I’ve had to work it out with a little help from my friends.

The relief is incredible! Having autistic friends means I can swap notes and indulge in the kind of sisterly conversation that can stop a potential meltdown in its tracks.

Tomorrow we all meet up in ‘real time’. Yes indeed – we were all getting ready for a train ride to Birmingham to provide feedback on an art space from an autistic perspective.

It’s taken me so long to write this post that at the time of publishing the meeting is done and dusted and we’ve gone our separate ways.   But we’re all bound for the same destination. Decompression central here we come!

 

 

 

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§ 11 Responses to Words, sensory regulation and autistic meltdown.

  • MSChavez says:

    Hope you had a wonderful time on your trip, and I’m glad you’ve found some of your tribe to relate to and share with.

    Liked by 2 people

  • VisualVox says:

    Reblogged this on Aspie Under Your Radar and commented:
    What a great post – about two topics near and dear to my heart. This is the 2nd time in one day that I’ve read an autistic person’s comment about words being disorienting. For me, the need to translate words (sounds, shapes) into pictures of what they represent, then sort out what those pictures mean, get the pictures to interact with each other, and then translate it all back into words… it’s such an arduous process, but it’s something I’m accustomed to doing. I wonder, sometimes, what it would be like if the rest of the world were to follow my “footsteps”, inch by inch, and mirror my every move and action, thought, impression, reaction. It would either give others an appreciation of what it’s like to be me/us… or it would send them running in the opposite direction.

    All things considered, I actually think we do pretty well with everything we have to process. Go us!

    Liked by 3 people

  • Nellie Moore says:

    Yes, my sensory issues can ramp up when circumstances change around me, my routine is changed, or things like needing to use the restroom become something I need to attend to. Something as simple as needing to use the bathroom can divert my focus and amp up sensory challenges. If I get either overheated, or chilled ( and it’s a very delicate balance for me) that can lead to a meltdown. As an aside I’m dealing with the ants on the skin feeling myself today . . . : (

    Acute Sensory Deregulation, Yes, I so understand that. More so every day. Thank you for putting words to it for me. Base Camp . . . Yes! Changing routine to get up early, leave home and journey through traffic and the city to see my doctor, even with my husband driving, throws a wrench into my day. I have an appointment tomorrow and I’m feeling it now.

    When I was first diagnosed (2014) and leading up to it, I would read about meltdowns and think, well I don’t have the experience (yelling, tears, anger, stomping of childhood) so maybe I don’t have meltdowns.

    What I’ve realized of late is that I do have a version of them, maybe more aptly for me termed overwhelm. Too hot or cold, a bit too much stimulation via loud noise, bright lights, crowds, having to find words for what I am trying to say, one more time in my day, and that is when I find myself in overwhelm, I think it’s an internal version of meltdown, this overwhelm, not unlike what I think I hear you describing.

    My response when it happens is that then everything adds to that feeling of overwhelm. Like bricks piling up. I go from managing sensory to overwhelm and then struggling for words, impatient to grasp them, angry that I’m struggling to find to find them, and angry (sad for the struggle I’m having) that anybody wants anything from me in that moment. Then everything adds to the feeling. A stray hair blowing on my face, the smell of something cooking, each thing adds up when I’m in overwhelm. It’s only been the past couple of weeks that I’m really seeing all of these things in this light so the timing of your recent posts are spot on and I resonate with them so.

    I feel like I am in Diagnoses version 2.0. Version 1.0 was my original diagnosis in 2014. Because of an Autism event I was Presenting at recently I stepped front and center into areas of difficulty that I had not even realized were so much of a challenge for me. Sensory processing challenges, executive function, anxiety, finding myself mute. I was simply gobsmacked at the size of my challenges. I think I read in one of your posts yesterday something about mid life diagnosis and how it all just shows up, like lights on a marquee (my words to describe how big and bright this has shown up) and that’s what it’s been like in recent weeks. It was not so difficult when I was younger. I think I had more stamina. I could push through and I did, though exhausted at the end of a day of seeing clients, I did not know why, and I just chalked it up to being me. Now I know why, and as I am getting older, pushing through is just fatiguing and overwhelming. I literally have a different skill set in this area now. It takes so much more to do what needs to be done.

    The result of beginning to understand all of this, and understanding internal meltdown is the realization that I have to heed what my body is telling me, and honor where I am at. Even knowing all of this as it has presented itself for me, in no uncertain terms, there was still a part of me that wanted to keep pushing forward with my commitments, just as I always have, masking and trying to fit in. My doctor said why are you doing this to yourself? I had no answer. In hindsight since his question a few days ago I realized it’s because I have equated masking and pushing through as part of my survival, and of not letting anyone, whoever I thought anyone was, down.

    With my husbands help yesterday (after much ruminating over the past few days, and then reading your post about the efforts required to either take a train or drive for an event you needed to attend – which lead me to tears of resonant understanding) I looked squarely into the face of my own experience and realized I have to champion for me. Today I wrote two letters to inform two parties that I will no longer be offering services, and that any services that I might be able to offer, (because I do care so much for the work) would have to be vastly different. I’ve heard back from one contact who was wonderfully supportive, caring, and understanding of my decision. I hope that the other is as positive. I don’t want to let them down, and yet I have to make these changes.

    I’ve picked up the rug in my world and given it a gentle shake and put it back down. Doing my best to support myself as I regroup in me 2.0.

    Oh, and on words,and the abstract, that’s a whole other post. I can relate there as well.

    I’m grateful to have found your blog as I begin this part of my journey. Thank you, and Thank you AWN for making me aware of this blog.

    Liked by 2 people

    • soniaboue says:

      I’m really glad you have received such a positive response from work contacts – thank you for writing such a fulsome response. It’s lovely to know that the blog is helpful 🙂 S x

      Like

  • Thank you, once again, for putting it all together so beautifully! I shall reblog this one.

    Like

  • Reblogged this on bunnyhopscotch and commented:
    Words … Meltdown … I couldn’t have put this across better than Sonia!

    Liked by 1 person

  • Rhi says:

    I’d been feeling like I couldn’t respond because I felt like I was on the inside of this post, as well as the outside.

    So I decided that should be my response.

    As always, just divine and reflective in the mirror-way that you do so well.

    Liked by 2 people

  • Thank you so much for this post. I have been a medical marijuana patient advocate for nearly forty year and have witnessed how cannabis has helped people with many different conditions. Only recently have parents with autistic children come for help and I have to admit, that I am groping in the dark.

    Your post is very helpful in pinpointing autistic sensory reactions since the children I see can’t speak. It will help us find formulas to address these symptoms. God Bless you.

    Like

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