'I lose the ability to properly process or make sense of any incoming information, like the whole system has stopped.' Sumita, autistic writer and voice of Wren in Pablo 

During World Autism Awareness Week 2019, we’re interviewing five autistic people about how they experience the five things autistic people said they wanted the public to know about.

Sumita Majumdar is an autistic writer and the voice of Wren on CBeebies' Pablo, a show featuring a five year old autistic boy who draws friends who come to life with magic crayons. Sumita told us about what life can be like as an autistic person who experiences meltdowns… 

What made you seek a diagnosis?

I had been struggling with my mental health, with anxiety and depression. I knew I needed some sort of support. I also wanted to apply to return to university, but having struggled at university previously, I really wanted to put study support in place this time to help me achieve my potential - and in order to put study support in place, I needed to get an official diagnosis. 

I had known about autism since I was a teenager, but because of the gender stereotypes surrounding autism, I felt that I didn’t completely fit the criteria. I was reading about undiagnosed girls with ADHD, which led me to wonder if there was specific research on how autism affects females, or if there is a different diagnostic criteria. I found loads of information and very relatable personal stories online, which stopped me from thinking ‘but I’m not autistic enough to be autistic’ and gave me the confidence to seek a diagnosis as my experiences made much more sense. 

What is a meltdown like for you?

To me, a meltdown is the body’s expression of being extremely overwhelmed, either because of sensory overload, or social or emotional overload, or, as it usually is, a mixture of these things. It’s when all of the layers suddenly keep building up and building up really really fast and the mind loses the ability to keep track of them as they multiply out of control, getting louder and louder, until it explodes. While the comparison to a nuclear meltdown feels like an accurate metaphor, my brain translates the word ‘meltdown’ to the image of things gently ‘melting down’, like marshmallows, or butter - but a meltdown does not feel like this at all! It feels like a volcano explosion of confused frustration.

As someone who used to mask my autistic traits, and as someone who is often quite introverted, my meltdowns would usually be expressed in private, behind a closed bedroom door. It would appear like I’ve had a tantrum or an overreaction, and would result in me in my room throwing everything around, crying, hitting things (and myself) to try and make the feeling go away, biting the duvet and being very frustrated. Personally, it’s more common for me to experience shutdowns than meltdowns, which happen for the same reason. The build up to a shutdown feels exactly the same as the build up to a meltdown, but just when the volcano explosion is about to occur, everything goes WHOOSH and then completely blank. I end up in this state of everything on the outside world being fuzzy and underwater-sounding. I lose the ability to properly process or make sense of any incoming information, like the whole system has been stopped. A shutdown can feel just as frustrating as a meltdown, because of not being able to figure out how to react how I want to, or not being able to react at all; there isn’t any ‘figuring out’ because the mind feels like it is past a state of being able to interpret.

Has anyone ever judged you for having a meltdown/shutdown? How did this make you feel?

Meltdowns have seemed like tantrums, and shutdowns have seemed like stubbornness. I feel that any judgement I have received has been a result of misunderstandings over the concept of having control or choice when meltdowns and shutdowns are happening. A meltdown can look like a severe overreaction to a tiny thing, when people don’t see all of the other hundreds of tiny things that have pushed me to the point of not being able to control my reaction, whereas a shutdown can look like I am purposefully choosing to not communicate or engage, even when I really want to, like in one of those dreams where you’re trapped in a box and can’t shout no matter how hard you try. It can be hard to explain or ‘justify’ these things unless people are willing to be patient and open to understanding your experience, in order to put perspective onto their own emotional reactions which may have influenced their judgement.

How can the public support someone having a meltdown/shutdown?

In public, we can’t always know what someone’s situation is, what they need, or why they’re behaving the way they are. It can be difficult to know how to help someone, or to know what you need when you need help. I think instinctual kindness is the best way to support someone. I am quite responsive to emotional energy, so even if people don’t seem like they’re doing anything, it helps when I feel like I am not being negatively judged. Open-mindedness to other people’s experiences is the key to being non-judgemental. As humans, we can’t help having subconscious judgements based on learned stereotypes, but we can help how we perceive situations by being consciously open.

Sometimes I’ve just wanted someone to ask if I’m okay - the reassurance of knowing I’m not alone can be grounding, and feeling grounded is very useful in these moments of loss of control. It’s the balance of knowing someone is there with me, that I am not being negatively judged for a reaction I can’t control, yet being given enough space to not be more overwhelmed by more social experience, until I can regain control again.

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