Meltdowns, shutdowns and autism
Many people who are autistic, do not identify as having a disability and I respect that and I would never wish to tell anyone how they should perceive their condition. However, I identify as disabled because of how I experience the world and, if my disability is not accommodated or supported, I will not be able to function or thrive. One of the main reasons I am disabled is because on occasion when completely overwhelmed I will have a meltdown or a shutdown.
I believe I am disabled in accordance with the social model of disability and not the medical model. In their book, Nerdy, Shy and Socially Inappropriate, Cynthia Kim clarifies this distinction brilliantly.
“The traditional model of disability - the medical model - looks at a disabled person’s body as something that is broken and needs to be fixed. The social care model points to the way society is organised as the limiting factor for disabled people. Removing barriers like negative attitudes towards disabled people and a lack of supports and adaptations are the focus of the social model.” (Kim, 2015, p210)
Meltdowns and shutdowns are horrible, overwhelming experiences that impact many people on the spectrum and which I believe are not generally understood or dealt with well in our society. To be honest, shutdowns are preferable to meltdowns in my opinion, but it seems we are not in control of how our nervous system will respond to stress, trauma and overwhelm at any given moment and in every situation. In her book Approaching Autistic Adulthood - The Road Less Travelled, Grace Liu uses accessible and compassionate language to try and explain meltdowns and shutdowns.
“To put it briefly, a meltdown is an outburst of extreme behaviours such as shouting, crying, aggression, self-harm, and repetitive behaviours. A shutdown tends to be harder to spot and may present as withdrawal from the person’s surroundings, reduced ability to communicate, and reduced ability to move away from the situation.” (Liu, 2021)
As a child, I used to cry easily and that was how I expressed my discomfort and overwhelm, if I could have avoided these experiences I would have and I was regularly shamed and chastised for this. They were horrific and humiliating experiences and I see them as being like epileptic fits, they are unwelcome, unwanted and persistent. They could happen anywhere, at home, at school when visiting family members. To the casual observer, I was a highly sensitive and overly emotional child and my tears would often appear at seemingly small events or as a result of things that were deemed to be insignificant to other people.
These events were a sign I felt unsafe and was not able to cope with the situation I was in, it often made no sense to those witnessing my behaviour and none to me either, it was my way of trying to manage what was happening within me and around me. It was a release and a sign that I was overwhelmed in the environment and distressed. After being told off and reprimanded many times by parents, teachers and others who could not relate to me, I began to go to great lengths to suppress and oppress my emotions. On reflection, this is when I began to mask my autistic traits in earnest, I was around four or five years old. I learnt very quickly that emotions were bad and that hiding them was good and that it was not acceptable or safe for me to be myself.
Meltdowns or shutdowns, in my personal and professional experience, are not behavioural issues or signs of defiance, they are signs that the person or child can no longer cope or function appropriately because of what they are experiencing. My neurology does not mean that I am mentally ill, it means I process the world and external events and information differently and if I am not supported or accommodated, there is a higher chance that I may become mentally unwell or burnt out. If I am supported, accepted and respected I will be able to manage my life and my mental, physical and emotional health more easily and I have a better chance of having a good quality of life.
I believe that meltdowns are usually triggered by an external event and identifying these triggers can help people who are autistic greatly. In my work, I try to help my clients to identify their triggers and make adaptations around them.
One of the adaptations I have had to make for my health over the years is that I have ended relationships with people who have been detrimental to my mental health and well-being. I have also had to manage the number of social events I attend and spend less time in high sensory environments and a lot more time in nature. I would find working effectively in a shared office almost impossible, due to my condition. In such an environment it would be hard to concentrate and focus on tasks particularly if there was lots of activity and noise going on around me. These are exactly the types of situations or environments that increase the likelihood that I will experience a meltdown or a shutdown.
If you know someone who is neurodivergent and you see them experiencing meltdowns or shutdowns regularly please remember they are suffering as these events are exhausting, debilitating and they are a sign of distress. Sometimes the smallest adaptations and adjustments can make a profound difference to someone distressed and struggling. And most importantly please remember that kindness will always win.
Meltdowns and shutdowns are disabling and they are beyond a shadow of a doubt the worst part of my disability. As an adult when I see children in distress, I always try to embody and be the person I needed as a child. I think most people, young and old respond well to kindness and when someone is experiencing a meltdown or shutdown that is when they need kindness the most.