Why opening up about my autism to colleagues is difficult

Last year, I was knocked against a wall on my cycle to work. It was a very minor incident, and one I wouldn’t have mentioned to my colleagues, only I was worried it would make me late. I tried cycling afterwards, but my body was clearly shaken, and I felt in greater danger of a more serious accident, now that my hands were trembling on the handlebars. I decided to wheel the bike home and get a taxi instead, and informed the school where I work of my expected delay.

When eventually I arrived, I was met with concerned faces, and people jumping to action to make sure I was OK. One teacher offered to take my class for me while I got a cup of tea in the staff room, and another took care of some paperwork left for me that morning. Within 15 minutes I felt calm again, and ready to return to work. The day continued as normal, and before lunch I had forgotten anything out of the ordinary had ever occurred.

This is an incident that comes to mind every time I experience an autistic shutdown on a work day; how easy it was to explain to others what had happened, and how quickly they came to my rescue. I remember the kindness I was shown, and the understanding that I was momentarily out of sorts. It was exactly what I needed in order to recover quickly.

Unfortunately, I don’t think I could expect the same level understanding if one of my shutdowns had happened that morning, not least because I’d never dare mention if it did.

For me, I know I am experiencing an autistic shutdown when, after feeling overwhelmed in any way- physically, mentally, emotionally, I reach a tipping point, and my energy levels suddenly drop completely. Simply put, it is a case of what goes up must come down; if I am experiencing high levels of stress, excitement or disorientation, it’s only a matter of time before my energy levels crash, and my body and mind are left empty. It is a debilitating and scary state to be left in, and one that makes me feel incredibly isolated. I could lie curled on my bed for hours, staring blankly at the wall, a dull feeling washed over me that makes it hard to determine what my body needs. I don’t think to eat, and I can’t muster the energy to pull myself up for a long time.

Sometimes I wake up in this state, and it is as though my body is frozen in place. I set multiple alarms on my phone to help hold my attention, and name them things like ‘please, please get up’ and ‘we’ll deal with it later’ to reassure myself that it will pass. It always does and, while I have never been late due to a shutdown, I do still worry about what I would say if it did happen – because having to say I was late because of a shutdown is too painful to even think about. How differently people would look at me if I had to tell them, how nervous they’d be around me afterwards, how ≈ surely it would change everything – because how could it not?

Sadly, as important to my health and wellbeing as it is, I don’t know how to explain my needs to others when a shutdown has happened; how it takes me longer to complete, or even carry out, simple tasks, or how there is no order or logic to my work, making it inefficient and seemingly careless. How do I explain that, if I have to make unnecessary conversation on those days, it robs the very little energy I have left to teach with, and leaves me so depleted I spend the rest of the day in a dark room, cold and hungry, but unable to move?

What sometimes makes being autistic difficult is not ‘looking’ autistic. Of course, there is no standard template for what an autistic person should look like, but society’s understanding of it is so heavily informed by clichéd stereotypes that nobody would ever expect someone like me to be autistic. I am friendly, polite, well-presented, professional and competent (side note: there is no rule book that states autistic people cannot possess these attributes, it is just generally assumed we can’t). There are no obvious flags that there is anything different about me, only that I am sometimes too quiet.

But there is something different about me, and though it isn’t visible from the outside, it causes constant motion on the inside. Autism forms the basis of nearly everything about me: the way I think and process information, sense things, communicate, react and navigate my way through the world. I may have placed a high enough value on social skills to eagerly develop my own from an early age, but that didn’t erase or replace my autism. Yes, I have done well hiding certain things about myself from view, but they are still very much intrinsic parts of me, and it doesn’t change my very real needs.

Perhaps if the media represented autism as anything other than a male condition, it wouldn’t seem so unbelievable that I, like many other women, am also autistic. Similarly, if society as a whole could stretch its imagination beyond the idea that autism is a condition that only affects children, then maybe an autistic adult who has learned strategies to better assimilate among their neurotypical peers mightn’t seem such an implausible concept.

As much as I love my job, there are challenges it brings that I might never overcome, even with the most supportive group of colleagues around me. Being a teacher is demanding, inflexible and –energy-intensive and, truthfully, it might not be suitable for me in the long term because of the challenges that my autism presents.

In the meantime, however, there are small things that make it easier to cope day-to-day, and that any workplace can adapt to support autistic colleagues:

– Provide written rather than verbal instructions

– Create a clear itinerary or timetable listing important dates and reminders

– Allow the space to take lunch or coffee privately to regroup

For me? Of all the things that help, the very best thing is others having an open mind about what autism is. Autism can affect anyone and in countless different ways; there is no one way to look or act it.

This month, I’m supporting #valuable, a new global campaign to put disability on the business agenda. I firmly believe that businesses, and work places of all kinds need to do more to help unlock the potential of the 1 billion people around the world who suffer with some form of disability, including those who are affected by autism, like me.It is time to stop kidding ourselves about our understanding of autism, and dismiss the limiting stereotypes once and for all. Only then can we learn to be truly accepting and accommodating of it, and finally allow for positive change.

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