As I mentioned in the first post of this blog, my ability to engage fully in discussion might be rather limited at the moment. It is true that I can sometimes write reasonably comprehensible prose, and sometimes the translation mechanism in my head, which converts the thoughts to words and words to thoughts, runs smoothly and efficiently. But sometimes it does not.
After I posted yesterday I received quite a few messages and comments on Facebook, some of which I wanted to answer fully and compassionately, some of which I wanted to scream “Yes yes yes” to, some of which were beautiful and eloquent and touching, some of which I wanted to challenge quite heavily, and some of which I found really really amusing – one in particular, for a very particular reason, which will be discussed on this blog in due course.
Some of these communications are lengthy and need more attention than I’m currently able to give. I just can’t read them and deal with them right now, so please go gently on me. It might take weeks to get to long stuff, so brevity is appreciated. My head is processing things really really slowly at the moment. I’m using most of my available energy to try to eat regularly, to keep clean and healthy, to try to salvage my maths degree (which is once again hanging in the balance – the Open University have known about my autism since October and are thus far being fabulous, but time is not on my side), to try to preserve a book project, and just to prevent the rest of life falling apart. In the last few months I have had to reduce my schedule drastically, pulling out of several marathons, declining playing things I really wanted to do, and spending time just getting to the stage where being a public autistic was something I could cope with at all.
Furthermore, I’m still deeply mired in the process of trying to get an official formal diagnosis and have filled in so many forms and gathered so much evidence that it has almost been a full-time job. One reason why the assessment at the end of November was so traumatic – it should have been the biggest day of my life, instead of which it was an unmitigated disaster. I’m still not able to write it up, although the bruises I inflicted upon myself while in meltdown in an unsafe place with no soft furnishings are starting to heal.
I’m still somewhat amazed at the number of people who thought I knew and weren’t surprised. I really didn’t have a clue – had I known I was autistic I’d have been talking about it years ago, because it is my way to talk about things whenever I can. Evidently my mask really was full of holes, and despite my spending 40 years believing that I was just a bit eccentric and the world was a really really tough harsh place, anyone who knew what they were looking for could see what was underneath. Sometime maybe I’ll try to discover where the holes were. What did people see that I didn’t? What made them suspect?
I also have quite a lot of e-mails in my inbox that really need answering, but I’m only capable of doing so sporadically, and I need to set up a calendar for 2017 and seriously work out what I can commit to and what I must decline. At the moment I’m struggling even to go out for a coffee, although I am, to some extent, trying to get out and about when I can because the alternative is becoming a complete hermit, and I know that however tough it is, when I can manage it, there is a world of things I enjoy – I just need to work out how to cope with them.
The effect that posting publicly yesterday had was not unexpected – I lost verbal functionality. I have had “silent” spells throughout most of my life, from somewhere around 5 years old. I have long known that when I am very cross, or very distressed, or very tired, I simply go silent. It has never occurred to me to wonder why because it has always been the case, so I assumed it was normal.
Since I’ve discovered I’m autistic, I’ve been paying a bit more attention to these silent phases and realised I am silent not through wilfulness or because I’m trying not to talk, but that I am actually unable to speak at all during those times. I have experimented with trying over the last few months and I really can’t make the words in my head come out of my mouth. They just won’t. There are sounds, but no words. Like someone pulled the plug out on the word channel. As I start to recover functionality I am first able to type, but not to talk, and I type on my phone if I need to let my husband know that the words are gone. When the words return they are at first monosyllabic and stilted.
I tried to reply to a couple of messages early in the day yesterday. The results, produced with immense effort, were also almost monosyllabic. There was this outpouring on my wall to which I couldn’t respond. Things improved as the day wore on, but by that stage I was utterly utterly exhausted.
However, one of the other slightly odd effects that “the autism discovery” has had (there have been several) is that I’ve suddenly started producing slightly different words, which I can do when proper sentences aren’t possible. I don’t know whether it’s poetry, since I don’t know much about poetry. But it is what it is.
Yesterday morning, when my spoken words were monosyllabic, my ability to communicate in writing impaired, this was what I did manage to pull from my head:
And so they know.
I cannot immediately discuss.
The words – difficult.
I lose words.
Words are effortful.
Other times they flow without stopping
And I do not know how to make them finish…
Alone, the thoughts are there.
And I can translate
But struggle to interact.
Thoughts on branches.
Thoughts in pictures.
Sometimes they come as words but jumbled
And I have to organise them…
Will have to wait
For better words.