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  • Writer's pictureJo Richardson Au

The Anxiety Demon

I have always been different, although I did not understand why until I was diagnosed last year as being autistic; as my son started his autism assessment.

Among other aspects of being autistic, one that has always affected me strongly is anxiety.

Anxiety is like having a voice in your head whispering all the things that can go wrong in any situation and not having the means to shut it out. For some of us, anxiety is part of daily life; a constant battle to overcome the anxiety to sometimes do the simplest of things.

People often believe that anxiety is situational or only happens during stressful periods.

This isn’t entirely the case; like a lot of autistics, I overthink everything and replay conversations and events in my head on a constant loop while my anxiety demon is chastising my choices, actions or social interactions; making my anxiety peak.

Convincing me that I have made a fool of myself, that I’ve been misunderstood or that I’ve made a mistake and making me dread being in these situations again in case I repeat history.

When faced with new situations or social events, our anxiety demon’s voice grows louder, demanding our full attention; overwhelming all other thoughts that we are trying to process.

“What if it’s too loud and there are too many people?”

“What if I get overwhelmed?”

“When will I be able to leave?”

“What if I say something stupid?”

“What will I be expected to do or act like?”

“What’s going to happen and when?”

“Will people dislike or laugh at me thinking that I’m weird?”

These are just some of the things that my anxiety demon says to me when I consider socialising or going somewhere new.

As an adult, I am able to manage my anxiety to an extent; I have worked out what situations I need to avoid, what I can do to prepare for new situations and how to self-regulate.

Our children do not have this experience yet. Most young children do not understand what they are feeling or why, so they need us to be able to read their signals and understand when and why their anxiety is high and, most importantly, how to help them manage it.

A huge anxiety trigger for most autistic children is going to school.

So many aspects are out of their control as well as having both educational and social demands put on them continuously that can trigger their demand avoidance in a situation where they cannot easily avoid these demands.

The first year of school can be so daunting for any child but more so for autistic children. It may be their first time away from being at home with a parent or carer full time, everything is new, they don’t know the environment, they don’t know what is expected of them, whether they’ll get overwhelmed, what the other children will be like, whether they’ll make friends, will they fit in, etc.

Consider for a moment that you are facing all of these things and your anxiety demon is constantly whispering that it will all go wrong, that you won’t cope, that no one will like you, that you’ll fail.

When I was at school, diagnoses weren’t common place and the schools weren’t as quick to recognise the struggles that autistics experience as they are nowadays, so it was a case that I had to try to manage my anxiety myself.

This took the form of leaving classes as soon as they finished so that I could spend some time on my own in a quiet bathroom before rushing off to the next class as well as spending break times and lunchtimes alone and away from everyone else in the playground.

When I got home, I would spend all of my time alone in my bedroom immersed in video games that I could escape into; blocking out reality and all other stimuli for a while. This would quieten the anxiety demon as I was focused so heavily on the game that I couldn’t hear it as much.

Without doing this I would often spiral into meltdown or would lash out at family members because I had, unknowingly, been masking all day (hiding my anxiety and differences to my peers) so when I returned to the safety of my house, all of the anxiety and overwhelm from the day would explode out of me.

Nowadays there are many different tactics, equipment and toys that can help autistic children manage and cope with their anxiety as well as different methods of signalling others that their anxiety is high and that they’re not coping. I would have found these invaluable when I was young.

Tools such as chewy necklaces that can be worn by kids and chewed on when they feel anxious, fiddle toys that can be kept in pockets and used when needed, equipment that can put on the chair like a wobble seat or the bands that go around the chair legs so that the child can bounce their legs off of it so that they can stim and move whilst still sitting at their desk and not alerting the attention of their classmates.

Schools are beginning to be better at recognising a child in overwhelm and distress and, in some schools, can issue passes to children in need to use when they need to leave the classroom and have some quiet time.

Educational Health Care Plans that legally have to be followed to the T are now more prevalent and are highly beneficial to our children that have additional educational, behavioural or sensory needs. Though funding in schools often leads to the money (that the school receives for each child with an EHCP) being used for other school equipment or supplies that aren’t directly used by the child the money is assigned for. Because this money is spent elsewhere, it means that the child in question may not be getting all of their needs met as there isn’t enough money left.

An important fact to remember is that an anxious or overwhelmed child is incapable of learning effectively. They are not able to process all of the information they are being given. Therefore it is imperative that measures are taken in order to help them to regulate their anxiety and overwhelm while at school.

The world is changing, slowly, to make things easier for us, but until it reaches the point that every autistic child has access to support and help where needed, we, their parents, have to truly know, understand and support our children; especially with their anxiety as it over rules everything.

We have to be the ones to communicate with the SEN workers and the schools when our children are struggling and we need to be able to explain to them what the issue is and how they have help to support your child as, most commonly, children will mask at school so the SEN workers or teachers won’t realise that they’re not coping.

Sometimes we have to face the hard truth that we can't always eradicate our children's anxiety. It's a tough pill to swallow and can hurt like hell watching them go through it, but sometimes (like if the anxiety is caused due to transitioning to a new school/environment) all we can do is be the soft, loving cushion for them to fall back onto; their protectors who will stroke their hair and tell them that everything will be ok.

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