Imagine you’re standing on a makeshift stage. Just you.
It’s time to dance. You start to move around the stage, the dancing getting better as you feel more comfortable. Then somebody removes some of the struts holding up the rickety stage. You start to wobble. You slow down to a hesitant shuffle and eventually you have to stop…
As an autistic, there are days when the world feels firm under my feet. Those are the days when what I’m doing seems familiar and ‘right’. I know what to expect and what is expected of me. I have the right balance between the demands being placed on me and the things I need to do to feel comfortable.
I can move the way I need to. I can rock back and forth in my chair or flutter my hands or bounce on the sides of my feet to process excess excitement or irritation. I can be alone if I need to be. I have time and space to enjoy the things that bring me happiness and restore me. I know my environment and I am not afraid of suddenly being plunged into a situation where my senses will be bombarded with unpleasant stimuli. There is a place for everything and everything is in its place.
I am safe.
On days like that, my stage is solid. I can do the dance called everyday life. I may even throw in some jazz hands! What makes all the difference is my ability to follow familiar rituals and routines and to stim freely without being made to feel ‘wrong’.
So how come these are things that are so often described as ‘symptoms’ of autism, aberrant behaviours to be controlled or eradicated? Why are they listed as ‘deficits’ rather than coping strategies?
Some of our rituals, routines or stims may seem unusual or odd to an outside observer. So what? If they fulfil a purpose, we should not be belittled, mocked or punished for using them – we should be commended for finding ways to self-regulate.
Sure, if adherence to rituals and routines becomes overly rigid, this can present a problem. It can prevent an autistic person from having positive new experiences or learning useful new skills. And yes, some extreme stims can be harmful – hand biting and head-banging, for instance – and a person may need to be redirected to get the sensory input they crave in another way.
But most of the time, routines, rituals and stimming are the bedrock of our existence. They make everything else easier. They provide the foundation on which we can build. They give us the confidence to do other things. If you don’t feel safe, it is extremely difficult to focus on anything other than the feeling of not being safe.
On those days, the days when the world does not feel like a safe place, please don’t expect me to pirouette or tap dance. I can barely manage the funky chicken.
About Maura Campbell
Maura is from Northern Ireland. She lives with her husband Stephen, her son Darragh, Ash the assistance dog and Baz the cat in the rolling countryside of County Down. She is a senior manager in the Northern Ireland Civil Service and served as a board member of Specialisterne NI from 2014-2016. Maura has spoken publicly about autism in both a personal and professional capacity and guest lectures at the University of Ulster once a year. She was diagnosed with Asperger Syndrome in 2011 when she was 44 years old. Like many adults on the spectrum, she sought the diagnosis after learning that her son had autism.