Yesterday I had a sensory meltdown, today I love graphs

This post is a start of my series on “Things you should know about autism” where we take concepts that you won’t find in a textbook, but are very real to autistic people and their families. We will focus on providing some information on what each concept is, what they mean to an autistic person, and what you can do to help in the future.

I had a sensory meltdown yesterday and today I feel shattered. For me, sensory meltdowns are pretty rare events, occurring a couple of times a year. Over my life I’ve learnt to identify what is going to escalate and do something about it. However, this isn’t always effective as: a) you can’t always see it coming until afterwards (when I guess you’re seeing it going…anyway), b) you can’t always do anything about it. Therefore, when this happens to me it is normally due to a perfect storm of events that all hit me at once, while having a bunch of other inputs rolling around in my head.

Due to the relevance of the situation, I wanted to make today’s post one looking at sensory overload, meltdowns and shutdowns. While there is an increasing amount of research evidence looking at sensory overload, we are going to focus on that at a different time and instead look at what people experience.

Firstly, let’s get some definitions down:

  • Sensory Overload = Where a person experiences stimuli at a higher level than they can self-regulate.
  • Sensory Meltdown = Where the level of sensory overload reaches a high level for long enough that a person cannot tolerate it, leading to an intense physical and emotional external reaction.
  • Sensory Shutdown = Where the level of sensory overload reaches a high level for long enough that a person cannot tolerate it, leading to an intense physical and emotional internal reaction.

Something I want to stress on at this point is that using the word ‘sensory’ means anything that is an input to a person. We often think of the five senses (sight, hearing, touch, taste and smell) or the seven senses (adding in vibration and proprioception). But actually think of anything that you feel that is new information. There are the feelings of what is happening in your body (interoception). There are emotions. There are thoughts. All of these can play a role in producing this state of overload.

I was once shown a method of understanding these that used graphs. I love a good graph, so let’s give it a go.

Neurotypical Sensory Stimulation

Graph 1: Represents neurotypical responses to sensory stimuli throughout a day.

The blue line shows what most people experience. When a neurotypical person is going through the day they will have points of heightened sensory around (ex. Walking past a building site, hugging your partner) and reduced sensory arousal (ex. Sitting in a quiet office, going for a walk in a serene park). The key thing is the relation of the blue line to the orange line. The orange line is the point at which sensory overload occurs. Anyone can experience sensory overload (just ask people who have spent time in a hospital). However, for neurotypical people this is rarer. The reasons for this are being investigated, but we’ll look at that another time.

Neurotypical and Autistic Sensory Stimulation.png

Graph 2: Represents neurotypical (blue) and autistic people’s (green) responses to sensory stimuli throughout the day.

So now we add in an autistic person (for note: this is before taking into account whether they have a tendency towards sensory over- or understimulation). They are doing the same things as the neurotypical person. It starts off the same, but after the first bit of stimulation they aren’t able to recover from it as quickly as the neurotypical person. Then the second bit of stimulation comes along and because they weren’t able to recover they are pushed over that overload line. They start to recover a bit but then the next stimulation occurs and they are pushed significantly over that line. This continues until they are left in that overload place even when the sensory stimuli has gone.

This is an idea of what sensory overload on an average day can look like. Due to autistic people requiring more time to process information, any peaks in stimulation take longer to recover from. The problem is that life doesn’t slow down. Everything continues and so they never get the time to recover from this and then it builds up and up.

There are four destinations from this point: 1) the person can let the overload continue to build up, but they still have the reserve that they don’t reach a meltdown/shutdown point; 2) the person can let the overload continue to build up and they reach the point at which they need to release it and have a meltdown; 3) same as 2, but ending in a shutdown; 4) they leave the situation and take the time out to process everything and recover.

Reaching Meltdown and Shutdown Point.png

Graph 3: Represents an autistic person becoming increasingly overload and reaching the point where they can’t tolerate more sensory input (purple line).

A meltdown or a shutdown are like the ripcord of a parachute – at some point you’ve got to use it otherwise you crash into the ground and break apart. When this sensory stimulation is beyond your ability to tolerate you need to do something about it. However, at this point you have been overloading for a long time and it is difficult to think the way you would normally think when you are in this state. Therefore, you react. Either you have a meltdown where you release all of it outwards, or you have a shutdown when you stop letting anything else in. The results of this are ultimately a release and a return down to a lower point.

However, this has consequences. Not only directly from anything that happened during this process of meltdown or shutdown, but in a deep sense of mental anguish. Guilt, sadness and fatigue – a lot of fatigue. At the end of this sort of episode it can feel like you have performed high intensity sports for an hour. Your muscles ache, your head is pounding, but mostly you just feel mentally exhausted.

The build up of these factors then add up for the future. While having a meltdown or a shutdown is a means to an end and brings you down to a lower level of sensory stimulation, in the process it reduces the baseline at which you experience overload. This is because you still haven’t recovered. You have released, but you are not back to your normal.

Baseline reduced.png

Graph 4: Shows the same events as in graph 2, but with the baseline for overload and the tolerance point reduced.

Taking into account the events from graph 2, now you enter into overload from the first stimulus. You barely get out of overload before you have the second stimulus and then don’t recover after that. By the third you are past your capacity again.

This is the problem with overload, that actually it is not just one day. Each day it builds up. Some people have a huge capacity for dealing with overload before reaching their point where they can’t tolerate it any more. But that doesn’t mean that they aren’t overloaded. This constant overload can continue across days, weeks and months without full recovery. This lack of full recovery means it just continues to build and exhaust them. This is what I term chronic overload and is really painful for people.

So what is it like to have sensory overload? The National Autistic Society made a good video to help understand this during their ‘Too much information’ campaign (https://www.youtube.com/watch?v=Lr4_dOorquQ). In this you walk through the experiences of a child in a busy environment and see each of the bits of stimuli that they face (plus he has a cute dinosaur with him, which is worth a watch for that alone). While it doesn’t necessarily look like that, the thing that the video gets across quite well is the feeling of anxiety around it. If you haven’t experienced overload before, then imagine feeling that anxious continuously over the whole day, then over weeks, then over months. That feeling of being on edge.

Overload, meltdowns and shutdowns are unique experiences for each person. People don’t experience it the same way. However, a key thing that is consistent is that feeling of being on edge with every bit of information becoming more and more prominent in your mind. You don’t let go of the past bits of stimulation, they are still there, but more bits are added in removing all of your focus on what you were trying to do in the first place.

Yesterday I had a sensory meltdown. In retrospect there were a fair few things building up to it – I had stayed up late a few nights in a row yet woken up at the same time as normal, I was supporting my fiancé with something they were going through a few days previously that had been a bit emotional, I had been starting to get things rolling with the blog which provided a new interest (yay!) but added some stress, I decided to go to a new church after not being to one for many years, and I was going to dinner with my family later. This added on with general continuous life stressors, and the sensory input that I can normally deal ultimately built up over time.

It started with just feeling hugely intense emotions. Feeling irritated to a degree far beyond what is normal for me. I ended up going to a shop to pick up some essential items and was just feeling like that the whole time. All of the external sensory inputs had a certain harshness to them, but I was more focussed on the feeling at that point. I got back home and my fiancé was tidying the house. I went into the bedroom and the bed was unmade.

And then I clicked my fingers.

Stimming is a method of using movements to try and help calm you down. I clicked my fingers to release some of the tension but everything was still happening. My fiancé was asking me what was happening and then I started to do a whole new set of stims that I hadn’t done before. My body was tight and tense. Everything that was messy in the environment was becoming more and more prominent in my head. I was in pain.

I started to get hotter – I don’t do well with heat and at this point I was saying lots of things and feeling lots of things that I can’t totally remember. My fiancé tried to come up with practical ways to help me, but I needed us to stop talking for a bit. Eventually I got to a point where they could help me with some deep pressure exercises that helped a bit. But ultimately I figured out I probably needed to eat as I hadn’t eaten for a while and even though I couldn’t feel that I was hungry, I probably was. So I grabbed my lunch, and then saw the ice cream in the freezer.

I’ve been controlling my food intake a bit now, but I knew the ice cream would help.

3/4 of a full tub became an empty tub and I ate my lunch while sitting in my bedroom with the window open (in winter), underneath my weighted blanket, with a diffuser on next to me and a soothing TV show to watch. I gave that a while and that started to work at making things better.

But then I was left with the aftermath. Physically everything ached and all of my movements became much slower. I slowly helped to tidy up the house a bit, but everything took time and effort. My fiancé felt my head – it was hot. It does that during things like this. The fun part was my right thumb that wouldn’t stop twitching. It amused me.

Ultimately I managed to put it back together and went to dinner later in the day. I was exhausted but managed it. Then today I have a ‘sensory hangover’, where everything needs to recover a bit. I’m tired and hurty, my head isn’t working as nicely as it normally does, but I’m all in all ok and should be back to being me soon after a day of putting all of the pieces back together.

To finish us off – I want to go through a few key points to remember when you or someone you know has a sensory meltdown:

1) Be nice to yourself – No one wins in this situation. The person experiencing it has an awful time, and their actions may have an effect on others around them. For the person in it, when it gets to this stage, they likely don’t have the control of what they are doing. In the moment, just be nice to everyone involved.

2) Take a no blame approach, but address any behaviours that aren’t ok – While a person may not have control in the situation, that doesn’t mean that their actions are ok. Some things aren’t ok regardless on how you are feeling (ex. physical abuse) – therefore, it is important to address it. However, when doing this try to do it in a neutral way. Don’t blame the person for what they’ve done while having a meltdown. But discuss how their actions made you feel and come up with methods together that can be used as alternatives when a person is overloading – figure out when you can help and what ways you can use to help, figure out some way of communicating between you for when you shouldn’t get involved. It is important to talk about these things.

3) Look at what triggered the event, and figure out some ways to reduce the chance of it happening again – You can’t stop everything in life. But if you can figure out when you are doing too much then this can help you for the future to know when you need to slow down what you are doing.

4) Know what sensory things can help during the episode – We’ll discuss more about methods to help with sensory integration in the future, but figure out what things work for you in the situation. If you have a plan ahead of time then you don’t need to come up with one while your head is hurting.

5) Have some time to recover afterwards – do the things that make you feel good and relax. When you are able to slow life down, slow it down. Life gets too fast and finding moments to make it slower can really help.

I hope this helps in some way! If you have any comments or thoughts then please put them below. I’m sure we’ll probably come back to this topics in the future so hopefully we can improve this later on. Until next time – have a good day!

References:

Autism West Midlands (2016). Meltdown and shutdown in people with autism. (URL: https://www.autismwestmidlands.org.uk/asset/2017/11/Meltdown_shutdown.pdf). Last accessed: 18th February 2018. – I found this while doing it and it showed similar things to what I wanted to say. If you want more information this is a good place to go!

Autisticality (2014). Defining meltdowns. (URL: https://autisticality.com/2014/06/10/defining-meltdowns/) Last accessed: 18th February 2018.

McKay (2017). The M Word: We need to talk about adult autistic meltdowns. (URL: https://medium.com/@AshleaMcKay/the-m-word-we-need-to-talk-about-adult-autistic-meltdowns-fec98f60157b) Last accessed: 18th Feburary 2018.

National Autistic Society (2016). Can you make it to the end? (URL: https://www.youtube.com/watch?v=Lr4_dOorquQ). Last accessed: 18th February 2018.

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