Meltdowns are a huge part of life as an autistic person. They are often misunderstood, misinterpreted and cited as reasons that autistic people need curing or are childish. In reality, with the right understanding, meltdowns can be understood, remedied and even prevented. All you need is a comprehensive idea of what’s happening, and I think it’s safe to say I’ve got that. To achieve this knowledge, you need to look at a few things: what a meltdown actually is, the causes and triggers to aid future prevention, what can happen during a meltdown and finally, how to cope in the moment.
What a meltdown actually is (and what it isn’t)
I want to say meltdown is a response that autistic people have to a particularly distressing or overwhelming situations, but it feels like a huge oversimplification. During research for this post, I came across a definition that made so much sense to me. It’s not condensed in the way I thought it had to be, but I don’t think you can do that in this case. I found the definition on the autism wiki, and here it is:
“Neurotypical and autistic people have the same fundamental response to stressors. When people recognize something as harmful, they become alarmed. Their brains and bodies secrete combinations of chemicals that people typically recognize as emotions. Those emotions, in turn, spur people to take action intended to face the threat. If these emotions are ignored, then they will build until they prompt the person experiencing them to fight or flee the threat.” (Link)
The particular post then goes on to briefly mention that autistic people can face difficulties in identifying these emotions. This difficulty to identify and understand these emotions is called alexithymia, my post on which can be found here. Without this kind of internal understanding of emotions but feeling alerted to something harmful, I don’t think it’s surprising that we have meltdowns.
Another way to look at this is from the opposite perspective: what is a meltdown not? The easiest way to do this is to look at what it’s usually mistaken for – a tantrum. Tantrums have a goal, are done to illicit a reaction, are accomplished in a way to avoid physical injury and simply, the person is in control of themselves fully. A meltdown is pretty much the polar opposite, a sign of pure distress. I spent a long time not knowing that I’m autistic and even I mistook meltdowns for tantrums. I wondered what was wrong with me, why I couldn’t control myself. Now I understand more, I realise that it’s a natural fight-or-flight response, similar to that of a panic attack, really.
Additionally, there is another ‘type’ of meltdown called a shutdown. A shutdown is the same as a meltdown in the sense that it is a reaction to distress and they can be dealt with in a similar way. However, it’s a more inward reaction. Common things that happen during shutdowns are not being able to make sense of what’s going on, wanting to communicate but not being able to, staring straight ahead, not moving or responding and finding a place to be alone and lie down or curl up.
Causes and triggers
Learning personal causes and triggers can make life a lot easier, as it increases your likelihood of being able to prevent a meltdown. Causes and triggers vary from person to person so it’s best after a meltdown, whenever you feel ready, to look at the situation that caused it. For me, it tends to be a combination of factors that build up and up to the point where something that seems much less severe pushes me into having a meltdown. Here is a list of some common triggers and why they might be overwhelming:
- Sensory issues – over or under sensitivity can be very distressing for an autistic person. Being oversensitive means that seemingly quiet noises and lights that aren’t too bright to a neurotypical person could be overwhelming to the point of triggering the fight-or-flight response. I can’t speak from personal experience about being strongly hyposensitive, but I think it’s a similar experience but in reverse.
- Changing routines, or at least what is expected – These changes can vary in size, from changing an entire day’s plans for whatever reason to changing the order an autistic person gets ready in the morning, but they can be equally distressing.
- Communication difficulties – if an autistic person cannot communicate their feelings aloud or are being misunderstood when they communicate in the way that feels comfortable (verbally or not) can cause frustration that ends up triggering a meltdown.
- Anxiety – these can cover both anxiety disorders, something fairly common with autistic people, and the feeling of anxiety. Again, it’s a case of not being able to deal with what’s going on.
- Passing as neurotypical – also called suppressing autistic traits, this is where so much energy goes into not behaving in a way that feels natural, often to avoid uncomfortable responses or bullying. It’s exhausting, and being exhausted is so likely to lead to meltdown, because the resources to deal with it are naturally depleted.
- Illness – being ill is horrible for both the mind and body. Dealing with pain – in relation to sensitivity to it – or the feeling of everything being different to normal are just a couple of reasons why being ill can lead to more meltdowns.
Knowing that these are causes means that it’s possible to deal with these specific issues in the future before they escalate to the point of meltdown. This could mean bringing ear defenders everywhere to ensure if it gets too loud, there is a way to cope or allowing time away from people to act as autistic as possible or preparing in advance for potential changes.
And it’s all trial and error. You might find that one communication method makes things worse or a certain type of sensory equipment isn’t right for you. It’s all about working things out as you go along, but having a starting point, for example a personalised list of things you want to try, is important. When you find things that work – keep them, and use them again and again.
What can happen during a meltdown
The behaviours that occur during a meltdown can be difficult to actually explain. I’ve seen them described as a range of things including “extreme”, “dangerous” and “repetitive”.
By “extreme”, I think people mean that the behaviour can look that way to an outsider. Again, meltdowns are often confused with tantrums thus we do see similar behaviours involved. Meltdowns are a personal experience but some common behaviours seen during them are:
The repetitive part presumable refers to stimming, the self regulatory behaviours autistic people use to cope with the world around them. Most of this stimming is harmless but some of it falls under the category of an SIB – self-injurous behaviour. I struggle with head-banging, hand biting, hair pulling, skin picking (involving my lips mainly), aggressive jaw grinding and arm scratching. During a meltdown my brain is overwhelmed and cannot make sense of my surroundings. This means my awareness of safety is reduced greatly and I do harmful things without thinking about the impact.
Self-injurious behaviour during meltdown is not the case for everyone, but it’s not uncommon, either. A way to overcome this is to find tools for redirection and try to put them in a place they’ll be useful. Headbanging on a hard floor or wall can be redirected to a pillow, which will obviously cause a lot less damage. For biting, chewable silicone can be a great substitute. It can be brought in a variety of toughness levels and is often found as jewellery as an on-the-go solution. Long lasting lip balm, or moisturiser for skin, might helping with picking and having hair tied back are other solutions. Overall, redirection is time-consuming and difficult, so reducing meltdowns through the identification of triggers is probably more effective in the long run. However, redirection will reduce the damage done by individual meltdowns.
There is a raw and personal account of a meltdown from blogger Cynthia Kim, which brilliantly shows the confusion and difficulties experienced during meltdowns. It can be found here.
How to cope in the moment
Coping in the moment is actually incredibly difficult. I think the first step is knowing that it’s okay, and that nothing’s wrong with you. Having this knowledge, for me, was important in terms of personal acceptance. It made me realise that if a meltdown has started, don’t try and stop it, just ride it out as safely as possible. How to cope can be split into two categories: coping as an autistic person and helping an autistic person cope. Here are some strategies for both:
Coping as an autistic person:
- Try calming stims – flapping, rocking – whatever works for you.
- Find a place with the right sensory environment for you – it might be a dark, quiet room you can lie down in.
- Listen to some music, it doesn’t have to be traditionally calming – once again, whatever works for you.
- Do something related to a special interest – reading, writing, drawing, talking.
- Try to breath regularly, especially if you’re crying.
- Use deep pressure, a weighted blanket if you have one.
- Afterwards, have a shower/bath, a drink, a snack and sleep for a while if you need to.
Helping an autistic person cope:
- Their verbal communication might be reduced, if you need to communicate, ask simple yes or no questions to which a nod or shake of the head can be the answer – “Can I touch you?”, “Would you like to go to a different room?”, “Would you like me to leave you alone?”, “Would you like me to get you anything?”
- Don’t physically restrain them. The fight-or-flight response is triggered and they may fight without intending to.
- Offer solutions to harmful stims, for example, give them a pillow to bang their head on.
- Try to find somewhere else to go if it happens in public – a quiet room is best.
- Remain calm. They might be shouting and screaming but they don’t mean to. It’s a natural response and being surrounded by someone who is calm might help them feel calm quicker.
- Try to help with things like calm breathing, but if this makes the autistic person more distressed, stop and try something else.
- Afterwards, discuss what happened and how to avoid it in the future, but don’t push the conversation until they are ready. The actual meltdown can be traumatic or embarrassing and might take a while to be discussed without distress.
So that’s my guide to meltdowns! It’s one of my longer posts, but an important one, I think. Thank you for reading it, and I hope it’s helpful. You can follow this blog via a wordpress account or email to be informed when I’ve published a new post. I’m hoping to be doing this weekly with Sundays being the day where I publish them. Thank you for reading and supporting this blog.