Lots of autistic children will experience meltdowns and watching them go through it can be really distressing for parents. Especially if you don’t know how to help them. Here, we talk to Libby, an autistic adult who experienced daily meltdowns when she was a child. If you want to know what a meltdown really feels like for a child, read on…
Meltdowns are a common behavioural trait for autistic people but little is known about what actually happens during a meltdown and how that person feels when experiencing this sort of behaviour. I hope to explain meltdown behaviour as best as I can based on my own personal experiences as a child.
Meltdown behaviour is expressed by an individual when they are unable to cope within their environment and have become overwhelmed, usually there will be something to trigger this behaviour. Commonly, my triggers are bright lights, crowded areas and loud noises. The more unusual triggers of mine include objects which are out of place or when there are odd numbers of objects instead of even numbers. Everyone will have different triggers and unfortunately those triggers can be difficult to identify.
Let me introduce myself, my name is Libby and I am an autistic adult. I was diagnosed with autism as a toddler, shortly after I was diagnosed with selective mutism disorder. I am twenty-three years old, I study animal science at university and I actively share my experiences online. I have a Twitter page called GrowingUpAutistic which has allowed me to share my story with others and provide support to others.
As a child I was not developing as fast as my peers and I couldn’t communicate with my family so I couldn’t explain my triggers. I didn’t always understand the triggers myself. Thinking back to my earliest memory of having a meltdown, I remember being in a pram while my mother was shopping. I was in a pale coloured shop and the sun was beaming down on my face but it felt extremely hot and bright, as if someone was shining a hot torch into my eyes. Suddenly the straps on my pram grew tight around my shoulders. I did not know what was happening to me but instinctively I knew I had to escape because it was causing me distress. Unfortunately I could not explain to anyone what was happening nor could I get out of the pram to escape this bright and hot light. Because I was unable to escape I became overwhelmed and had an almighty meltdown. As a toddler up until my teenage years I had meltdowns every single day triggered by many different things.
What do meltdowns feel like?
So, what does a meltdown feel like and what happens during a meltdown? I am obsessed with learning about animal behaviour and I often relate my own behaviour to that of a prey animal. Imagine you are an antelope grazing with your herd, you hear a rustle within a bush causing you to look around in case a predator is ready to attack. You are constantly on edge because, as a prey animal, it is essential for survival to be wary of your environment. The bushes shake more violently so your muscles prepare to run, your heartbeat races and you run as fast as you can to escape the danger. You are in a complete state of panic but you reach a safe distance only to look back and realise that what you thought was a predator was actually birds nesting within the bushes. Eventually you calm down and continue to graze with your herd.
As humans we share this behaviour, we are triggered by something to be aware of danger. It is essential for survival to be able to run away or fight whatever it is that is potentially life threatening to us. When I have meltdowns, I react similar to the antelope, something triggers me to prepare to run or fight before the meltdown even begins. I can feel my heart race and my muscles prepare to fight or run. I am very sensitive to triggers such as light or sound and it is not always possible to run away from these triggers. My brain becomes overwhelmed with information and at this point I am pumped up with energy. This energy needs to be released so if I am unable to fight or run away then I have a meltdown. Even if the trigger is not life threatening.
During a meltdown it is difficult to explain exactly how I feel because you are in a complete state of panic, most of the time I feel numb. I self-harm during a meltdown by punching my head and legs, ripping out my hair and scratching myself. I have seen other autistic people have a meltdown and displaying similar self-harming behaviours. Fighting myself is my coping mechanism. This does not mean that self-harming is a choice, most of the time I will calm down from a meltdown and I will be covered in scratches and hair, my brain often does not register my injuries until I have calmed down.
Recently it’s come to light that I also suffer from Depersonalisation disorder. This disorder causes out of body experiences. Sometimes I could see myself having a meltdown, almost as if I was a person watching someone else have a meltdown but I felt like a ghost who had no feelings towards that person. Most people with this disorder will be distressed during these episodes but It never panicked me because I have had these episodes my entire life and it was only recently that I realised that this is not normal. I am unsure on whether other autistic people have Depersonalisation disorder but I aim to do some research in the future to find out whether there is a link between Depersonalisation disorder and autism.
Can you control meltdowns?
Now you might be thinking, how do you control your meltdowns? As a child I tried to control my meltdowns before they had even begun. When I was very young I remember shopping with my parents and we had reached the check out. I could hear a clock ticking but the ticking began to slow and appear louder. The lights shone brightly down at me when they appeared dull only moments before. I could feel energy building within me and I panicked, I was not in a pram this time so I ran and hid under a shelf nearby. I covered my eyes with my hands and I could hear my parents panicking. I did not come out until I had calmed down. I tried running many times growing up but it only takes seconds for meltdowns to occur so it was often impossible to avoid or control.
Taking notice of triggers
Meltdowns may be unavoidable when they happen but sometimes I can prepare for triggers. For example, once I was really worried about an exam. I often think in pictures so I was obsessively trying to picture the room we would be sitting in. I have 1-1 support at university and I was telling my support worker that I was worried I may have a meltdown before the exam. She said, ‘Okay well do you have Pokemon on you?’ which was not the answer I was expecting! ‘Yes,’ I said and she said ‘Come on then we are going to the exam room and we are going to play Pokemon.’ By going into the room and playing a game I enjoy, it not only allowed me to see what the exam room looked like empty and quiet but I also had a positive experience while visiting the room. While this will not work for all triggers, it is something that I will carry on doing in the future.
Fear of judgement
A mistake I made growing up was masking my behaviour from others in fear of judgement. I have seen people tut at children having meltdowns because they assume the child is playing up. As a teenager I decided that no one outside of my family was going to know that I was autistic. This made life difficult because I was constantly masking my behaviours from my friends. When I reached the age of seventeen or eighteen I became more accepting of myself. Mostly because it is tiring pretending to be someone that you are not. When I joined University I told my new friends that I was autistic, they were accepting but I was still masking my behaviour. Halfway through the year we had a group presentation coming up and I was extremely worried.
My group of friends and I were practising our presentation. My friends said, ‘Okay Lib, you go first.’ I saw them all looking directly at me, the blue computer screen behind them appeared brighter and I felt uncomfortable and panicked. ‘I can’t do it,’ I said and began to breathe heavily. Suddenly they sprung into action. They played soft music and talked to me reassuringly while I had a meltdown. My friends will never know how much it meant to me that they reacted in this way.
I do believe that awareness is helping to stop the misconception of meltdowns but we do have a long way to go. Meltdowns need to be talked about to educate others on what we may be experiencing during this distressing time. It is important to remember that I am not a professional and my experiences may differ from other people but I hope that I have helped you to further understand meltdown behaviour using my own experiences within this piece of writing. If you enjoyed this or want to know more about me and my journey please feel free to follow me on Twitter and I am open to answer any questions you may have. Thank you to My Family, Our Needs for inviting me to write this piece, I thoroughly enjoyed it.
If you haven’t already, do go and check out Libby’s Twitter page, she posts really interesting and insightful things about living with autism and we think she’s bloody brilliant.