I have always been different, although I did not understand why until I was diagnosed last year as being autistic right around the time 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.
All the 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 we’re faced with new situations or social events, our anxiety demons’ voices 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 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, which can trigger their demand avoidance in a situation where they cannot easily avoid these demands.
The first year of school can be daunting for any child, but more so for autistic children. It may be their first time away from home with a parent or carer full time, they have new routines to learn and cope with, everything is new, they don’t know the environment, and 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, whether they’ll fit in, etc.
Imagine 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, or that you’ll fail.
When I was at school, diagnoses weren’t commonplace, and the schools weren’t as quick as they are nowadays to recognise the struggles that autistics experience, so 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 on 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 lash out at family members because I had unknowingly been masking all day (hiding my anxiety and differences from 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 for them to signal to others that their anxiety is high and that they’re not coping. I would have found these invaluable when I was young.
Tools include 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 it, stimming and moving whilst still sitting at their desk and not drawing 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 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 who 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 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 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 where 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 overrules everything.
We have to be the ones to communicate with the SEN workers (special education educators and assistants, for Americans) 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 can help to support our children, as children will most commonly mask at school, so that SEN workers or teachers won’t realise that they’re not coping.
My son’s anxiety was at the point where he had become agoraphobic and couldn’t cope with even the most minor stimuli. We consulted with the autistic community and found a combination of supplements and a sensory diet that worked wonders to help him with taming his anxiety demon.
We don’t have to make the folly of having to learn from our own mistakes. Maybe that was the plight of the autistic before the internet. Now, we can learn from the collective information put out by the autistic community, others who have walked this path before us, and can learn what has worked and what hasn’t from them.