Published on 12, July, 2020
I'm hoping that the idea below helps other people at varying stages along the journey that we are all on.
My journey through struggle, realisation, diagnosis, and post-diagnosis (underway) has, as for most people I expect, included periods where autism generally and my autism specifically is all I think about, as well as periods where it seems that I've almost forgotten about it all (until office chatter happens, or the TV is too damned *excited* about everything, or I need to touch a wooden spoon!).
My memory doesn't seem to have enough spare capacity to carry around everything that I've learned so far about all of this, and this means that a) I fail to realise the benefits of this learning and b) can easily (as happened in my Autism evaluation!) be completely caught unprepared if someone asks me "So, what does autism mean to you?".
So, I created something that I'm calling my "Autistic Charter"; a single page description of the challenges and strengths that my autism brings, and what I resolve to do about it to have the best life that I can. I want to share it in case the idea helps others (i.e. you could make your own version), but also to see how people react to what I've written about myself. I'm taking a risk here that some will say "Pah! is that all you have to deal with?" but at least I will have a sense of where I fit on the landscape that we call "the spectrum" & whether I have close neighbours or live in an isolated spot at the edge of the village.
By the way, I'm also currently reading "The Nine Degrees of Autism" which complements these thoughts perfectly & I would thoroughly recommend.
Here goes:
If you’re sitting in an isolated spot at the edge of the village, then budge up and make space for me.
Thanks so much for sharing—I truly love this! I think the only thing I would add is, in addition to the impact on mental health, the impact on physical health (burnout), which in my case has been persistent, recurrent and profound.
I meant to add too that it is hard to disentangle the impact of autism from the impact of burnout, one being permanent and the other hopefully temporary - but, as you say, profound and probably always life changing.
I'm still continuing to recover from the burnout I had two years ago, and it's sometimes difficult not to feel that I'm also (impossibly) "recovering" from autism when what I've *actually* done is strengthen myself again and resolved to take care of my autism so that it doesn't shout at me or shut me down - another reason for the reminders & "notes to self".
How was burnout for you? I felt totally "I give up, someone else can look after me, I wish to hold on to nothing" and found that for a couple of months all I could do was watch daytime TV. When I finally started trying to write about it, I would literally need and take a 15 minute break after every sentence.
Fantastic - thank you :-).
I was so worried, in exposing almost the *totality* of my challenges, that the average response would be "how on earth did you get a diagnosis with such a trivial set of issues?" (and to be honest, I still challenge myself with the same question).
At least the first half dozen response have been "Yep, we see you, that's autism" (or at least, that's not "not autism") - and I draw significant comfort from that. Hopefully that effect is also working between all of us reciprocally.
I sometimes have an image that being autistic without understanding or knowing it is like spending your life swimming with dolphins whilst not realising that you're a horse; great fun sometimes, but exhausting for some reason that you can't quite put your hoof on. Then of course, you realise that the environment is wrong, not you, and the dolphins struggle to understand why you're happy now you've found your own field to gallop in (& they just can't emulate you!).
I love your first sentence by the way; that reached through my alexithymia and made me smile and feel understood & validated :-)