The monster

There’s a big, bad monster living in my head

It’s eating away at me from under my bed


I hear so many times how we (us PDAers and Autistics) don’t seem to care; about our appearance, about our hygiene, about our health, about the fact that we smell because we haven’t washed in days (or longer).

It’s not that we don’t care, although that sometimes does factor into it. It’s because we have a big, bad monster inside us.

Let me explain. 

For us, everyday tasks such as washing and changing our clothes are such a difficult mountain to overcome, with demand avoidance and sensory issues and transitioning difficulties etc. It’s not as simple as it is for others, we can’t just do it no questions asked. It takes planning and tricking and managing, we have to have a whole bag of coping strategies to hand just to have a shower.

These difficulties lead to tasks not getting done as frequently as they should (if at all). It’s not that we won’t do these tasks, it’s that we can’t. But we do still care, we do still want to smell fresh and look nice. This discrepancy in want and ability leads to food, food for the monster that lives inside of us.

What is this monster? It’s the self-esteem monster.

The self-esteem monster lives in all of us, but for some (I’m talking about PDAers and autistics here) this monster is far louder and far bigger and far hungrier than normal. The self-esteem monster feeds on our weaknesses, it hungers for the sadness and frustration we feel when we can’t do the things we want to do, the things everyone around us tells us we should be doing.

Everytime we try to wash but can’t, the self-esteem monster gets fed.

Everytime someone tells us we should be wearing ‘proper’ or ‘different’ clothes, the monster gets fed.

Everytime someone says we smell or are dirty or look stupid, the monster feeds.

Everytime our friends and colleagues pull away from us or push us away because we don’t fit into their expectation of what a person looks like, it feeds.

For every task left undone. For every sneer we receive. For every negative comment. For every negative look. For every person we feel we disappoint because ‘we can’t’. It feeds.

There are a few ways of dealing with the self-esteem monster.

We can give into it, feeding the dark thoughts until the self-esteem monster grows larger, overshadowing our thoughts and beliefs until it’s no longer the self-esteem monster, but the depression monster.

We can rise above it, telling ourselves we are doing the best we can, starving the monster with positive thoughts and building up our self-esteem angel until it overshadows the monster with positive belief and happiness.

We can completely ignore the self-esteem monster, distracting our thoughts away from the tasks we should be doing and focussing on the ones we can do, pretending we don’t care, that we don’t really have a monster living inside us slowly eating away at us from the inside out.

Guess which one most people use? 

As kids we aren’t very good at positive thinking, it’s something we usually have to be taught. It’s all too easy for kids to sink into depression, but the body has a fight, flight, freeze response which tries to protect most people. The body, not wanting to hurt by focusing on the monster, and not having the skills to defeat it with positivity, turns away from the monster and ignores it. They pretend it’s not there. They pretend they don’t care. Because caring leads to feeling which leads to depression.

We don’t care because we can’t, because caring is hurting.

If you want us to care about our appearance, about washing, about feeling good, then you need to help us develop the skills to fight the self-esteem monster. You need to make it easier for us to to do the tasks we want to care about doing, we need to learn how to feel good even when we can’t do those tasks we want to do but can’t, we need to know how to fight the monster. We need your help.

One thought on “The monster”

  1. That totally makes sense to me about my daughter. I constantly hear “I don’t care” when I mention about cleaning teeth, using deodorant etc.
    The thing is I don’t know how to go about helping in self esteem because I’m not that great with it either. I’ll need to investigate that one. Thanks for this 🙂

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