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.
Honestly? I've been thinking about your comment all day, trying to incorporate it into my recently and rapidly evolving understanding of autism. It's funny, in the months prior to, and immediately following, my diagnosis, I spent every waking (and many sleeping) minutes reading everything I could about it. The diagnosis felt like a vindication of all the emotional, physical and sexual traumas I had suffered; my life and experiences finally made sense. And then I promptly pulled myself together and carried on masking, not knowing any different.
It's only in the last few months that I've started re-visiting my autism journey and examining my workplace misunderstandings and traumas, which were necessarily more insidious because of workplace etiquette and just trying to carry on like every other professional on the train and in the office. The NAS forums here are a relatively new addition (I was researching ASD back in 2011/2012), and have been opening my eyes to a whole plethora of things, particularly the older-adult experience of ASD now that school and university years are well behind me and my current phase of life revolves more around my mortgage, fiancé, elderly parents, and balancing health, income and an as-yet elusive 'sustainable' career in this context.
At age 9, I was told I had ME. I think this was actually my first autistic burnout, and I missed six months of school sat in bed watching daytime TV—a combo of Sesame Street and whatever snooker match was on terrestrial television. My second episode happened the week after I started uni, but I'd worked so hard to get there and refused to leave without my degree, so struggled through like a zombie to the bitter end; by my final exam, I couldn't string a sentence together—it was as if my brain had forgotten how to process language. It persisted throughout my twenties and became significantly worse following a really unexpected and unpleasant encounter with a woman while I was volunteering as a school governor. That was the first time I lost the ability to walk (my legs went numb from the stress of it) and decided it was time to completely shut myself away from the world because I just couldn't cope in it any more. Following a year of myriad specialist tests (including mitochondrial function profiling), I was eventually diagnosed with CFS. At that point, I had been bed-ridden for nine months (burnout number three), and relied on my parents to wash me, feed me, take me to the loo etc. It was B-A-D, followed by another year in a wheelchair (we had a stairlift fitted and the bathroom fully adapted by the council), and then another two years after that for me to be fully independent again. Burnout number four happened thirteen months ago tomorrow when I became housebound once again. I was subsequently diagnosed with chronic vestibular migraine, which I'm starting to believe is just another way of saying my sensory processing has become so completely overloaded that I feel constantly dizzy and nauseous (so no surprise that none of the meds have helped). Three weeks ago the situation got much worse when my legs stopped working again, but the nice man from Amazon delivered my new walking frame today. Yay. Just what every 37 year old wants.
This time around, I'm not in a position to give up; my partner works away during the week so I'm pretty much left to care for myself, which has been really challenging. I'm averaging one bath a week (timed for the day he gets home), and have skipped no end of meals—mostly because I just can't be bothered, but I've also realised that being hungry is neither here nor there to me. (Do you ever find that too?) I really can't bear daytime TV (it just makes me want to punch people or break stuff, and I don't have the energy for either), but I did sit through the whole of Season 12 of Big Bang Theory on Netflix last Tuesday. I've also not opened my blackout curtains in three weeks, which my house plants aren't best pleased about, and seem to spend hours just staring into space whilst lying on my bed. The only thing that keeps me sane and gives me hope right now is this forum.
Since the CFS diagnosis in 2010, I've always just assumed that the background fatigue I feel everyday, and the complete exhaustion I felt every evening upon return from work, was due to that; but your comment today has made me realise that my autism is almost certainly the root cause of my CFS, and my fatigue is my body's way of telling me that my world isn't yet structured properly for me to comfortably manage my autism. In short, my CFS is possibly just another symptom of my autism rather than being the problem in itself. What you said about strengthening and resolving to take care of your autism so that it doesn't shout at you or shut you down has resonated with me more than I can say. I'm so grateful for your wisdom and insight. I figure if I'm going to be stuck at home for the foreseeable, then I might as well re-educate myself about myself. It's kind of like re-reading your favourite novel, and all the experiences you've had since you last read it change your interpretation, although the story is the same. I guess I'm re-reading the story that is me.
Wow - what a journey! And not in a good way, in parts. But the way you ended that was so positive. "Re-reading your favourite novel" is an excellent and positive way to frame the post-diagnosis thought process.
I haven't experienced anything like the breadth or depth of physical symptoms you've described, mine have been mostly mental. My first was leading up to divorce when my kids were young, then about five years later after a busy time at work, then a bit of a dip, then the mother of all burnouts (for me) in 2017 that morphed into the ASD discovery. But the impact on me was all about motivation and lack of desire for life.
Thank you for sharing your story.
One of the phrases that someone said that stuck with me is "Life is now". So true - we are where we are, we know what we know, and sometimes just taking pleasure from whatever you can in the moment is the best thing to do.
If we could distil the wisdom on this site and bottle it, that would be precious :-)