Just looking at the title of this blog post is enough to raise my heart rate. I chose the words deliberately, even though they, and many variants thereof, are triggering for me. As I type this, just thinking about it is making my legs jiggle wildly, making me want to stop typing so I can chew the ends of my fingers, and making me feel slightly sick.
“Why?” I ask myself. I am a reasonably intelligent person in my mid-40s and I consider myself rational and logical in so many ways, yet when I’m asked to communicate I turn into a petulant child and have to use every ounce of my energy to make myself do what I know I have to do, because somehow it is so very very difficult. When I am well, and have lots of energy it becomes easier. When I know exactly what I need to say or it is something easy and straightforward, it is also easier. But much of the time it is really really difficult and triggers something completely irrational in me. I didn’t realise why until a few months ago.
I was reading an e-mail from my Open University tutor. She’s a lovely tutor, and is being really amazingly good considering how badly my work is currently going, and she’d said she was fine with an extension but since it was over the extension limit I would need to contact student services too…
And there was the trigger. I slammed the iPad down on the sofa and sat and cried for 2 hours.
By any ordinary standards, and by the standards of my logical brain, yes, of course it was unreasonable. The woman had asked me to send an e-mail. That was it.
I eventually contacted my husband and told him that the degree was finished. Even if I could eventually get enough brainpower together to do the mathematics, the communication and the form-filling was so way beyond me that I might as well give up.
And then the penny dropped. The trigger wasn’t anything to do with the work or the extension, but with the request, by one person, that I communicate with another. It’s bad when there is just me and another party involved, but becomes exponentially worse when a third party is added, especially if I need to communicate something unknown or not simple.
And we started to look back on incidents throughout my life. I went back to summer 2016, and to sitting on a bench with one of my colleagues from the viola section and saying to her that I needed to cut a rehearsal because I wasn’t feeling well. She said to me that I really should tell the section leader. That remark triggered a meltdown that saw me run away across 2 fields, have an asthma attack sufficiently bad that I had to empty my handbag out onto the grass to get at my inhaler, and meant that I missed lunch and spent several hours crying in my tent.
And I remember back to an occasion when my father-in-law visited our house, not long after we were first married. My late mother-in-law was very fond of writing letters and he suggested that it would be a nice thing for me to do to write to her regularly. I very nearly hit him. I ended up running up the stairs in tears on the landing of the house, screaming about how horrible my life was and how I was so overstretched that I couldn’t possibly imagine being able to write letters. It took several hours of very gentle work by my husband to calm me down.
One post-Christmas time as a child. I always found thank you letters really really difficult, but my parents were very keen for me to do the polite thing and write to the assortment of random folk who sent me postal orders or whatever. One year I’d actually done the letters, without being asked. They were in envelopes, with stamps, ready to post. My mother came into my room and said “Have you done your thank-you letters?” I felt the anxiety rise, I felt the stress, the angry, the bad. She walked out of my room and I took the thank-you letters out of my desk drawer and ripped them into tiny pieces. I’d done it on my own, but the being ASKED to do it had ruined it. The feeling of stress that this was something I’d been told to do was so overwhelming that I couldn’t bring myself to send them.
And all of these things, when I consider them logically, make no sense. They’re simple requests – write a letter, talk to someone, send an e-mail. What on EARTH is so difficult about this? Why do I find these supposedly simple jobs so challenging? Why do requests to communicate send me into meltdown? It’s utterly incomprehensible.
Until I factor in autism. Until I view these incidents (and many more like them) from the perspective of someone who has a condition that is partly defined by problems with social communication. Until I sit here at my desk, looking at my “master” jobs list and see that the jobs that are still to be done are mostly ones saying “E-mail x about y” or “Message so and so” or “Contact somebody about something”. The contact and communication jobs are the ones that fall by the wayside as soon as my energy levels fall and as soon as I start to feel at all unwell.
I can “perform” on this blog, and, to an extent on my facebook wall – I regard both of those, ironically, not as communication in the same sense that sending an e-mail or even a facebook message is. They are the equivalent of standing on a stage giving a presentation. I can do that. The e-mails are the equivalent of sitting around in the pub talking to people individually after the conference is finished for the day. Unless I have a lot of energy to spare, I can’t do that.
My e-mail inbox has always been an issue. I have a limited number of days per week that I have sufficient energy to send e-mails, and they pile up. The jobs left on the jobs list have always been the ones requiring communication. And many many meltdowns have been caused by someone asking me to communicate either with them, or, even worse, with somebody else.
As for the telephone? The ringers on both my telephones have been turned off for months. I only turn them on if I’m expecting something specific (such as I will be next week when the car goes in for its M.O.T. test and the garage will need to contact me for authorising work). The number of nonverbal episodes I’m currently experiencing make the telephone impossible at times in any case. I do still use the phone from time to time, but currently only for well-scripted conversations, or with a very few known people, and at times that I’m feeling particularly strong and capable.
When people first started suggesting to me that I might be autistic and when I started reading about autism, I came across the notion of a “communication disorder” and, at first, dismissed it. I can talk. I can communicate. Me? Communication problems? I was, of course, thinking of more overt communication difficulties, of those who are unable to speak at all. I can speak perfectly competently for much of the time (not all – there’ll be a blog post about that at some point), and so I didn’t instantly think any of this applied to me.
Until I started to investigate, to find out what was going on under the surface, to discover just how much energy sending a simple e-mail takes, to observe the leftover items on my jobs list, to think about how many people I’ve lost touch with over the years because I haven’t communicated with them, to observe how easily a meltdown can be triggered by someone asking me to communicate with someone else or pressuring me to communicate with them.
And I asked myself why a logical sensible grown-up person like me should react quite so badly to all this stuff. Why am I so exhausted by sending a few e-mails? Why am I sitting here now feeling angry and triggered and upset even by my own blog post?
And I realise that it is because I find communicating with other people so very very difficult.