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.
What you've listed as your challenges are things I also struggle with. I don't usually 'relate' to things but those I do. It helps me to see that I am not the only one who deals with these issues, as I'm sure many other people here do too.
I will probably make one of these myself to help me understand myself better, as well as to help others to understand me (cuz they sure don't!)
Thanks Nugget, yes I forgot to mention that it's a great summary for showing other people e.g. at work (but home too).
This is great - thanks for sharing it :) I always struggle to explain what autism means for me, so this is such a good idea.
I definitely relate to most of what you've written here - it sounds very like me! I should also get better at saying 'no' - I'd like to work on that.
Thank you BuckBread, Someone I know is fond of saying " 'No.' is a complete sentence." & I've started practising using it and the world doesn't end :-). I even used to shy away from saying "No" with a reason, but I'm finding that this goes down OK too.
Thanks this is awesome.... I definitely identify with nearly everything you have written, but would not have been able to summarise or articulate as well as you have. Visually it really works for me too. I too like data lots of other people don't understand why but it is like a language of its own to me from which you can find curious anaomolies and focused solutions.... I find that exciting. Thanks again this really useful.
Excellent - thanks, I really like it when stuff I do turns out to be helpful to other people :-)
I can identify with all of the challenges that you have included in your model. what I'm struggling with a bit is my own 'reasonable adjustments' section. Do I need to make reasonable adjustments? What adjustments do I need to make? Why can't I just carry on as normal? I like my life how it is, I don't want to change it! I probably need to read more and educate myself more about my symptoms but I found that after diagnosis I 'suddenly' lost interest in reading everything possible about Autism, despite the fact that it had held my interest well for a few years previous to diagnosis. I'll figure it all out at some point......
This is absolutely fantastic. I am in a terrible situation and have been telling my psychiatrist for ages that I would prefer we communicate by e mail rather than face to face as I am autistic and your structure shows exactly this.
I am struggling to conquer suicidal ideation and this has been my life’s focus for 7 years now . It is also a common cause of autistic deaths and your structure does I believe show why . As we can’t stop thinking about how we have failed and try to overcome it but as we continue to fail become increasingly hopeless
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.
Thanks Kitsune :-)
I can relate to that.
What I'm reading in "The Nine Degrees of Autism" talks about how we build a model of who we think we are, and without it we are adrift and have to evaluate everything in isolation. That model is very protective of itself, because we depend on it for our survival; hence it is resistant to change. Hence the struggles that everyone has around change, acceptance, grief etc.
Like you, I almost lost interest after my diagnosis, and I worried that I would fail to realise the benefits of my new understanding if I didn't somehow distill and consolidate it. Otherwise, as I recovered from my burnout, I would likely repeat the cycle - just as I have many times stopped antidepressants because "I feel good nowadays!". I would be tempted back in to the world - which I did enjoy - where I was managing small teams and carried along in the crowd of other teams, increasing my pace of work and making work, so I thought, more fun - but I didn't realise how this was exhausting me from the inside out & I need a reminder of the fact of this and the reasons for it.
So my reasonable adjustments take away most things from my work life that were causing me the stress and exhaustion that was almost invisible because of my alexithymia. They are so simple; recognise that people interaction drains me (despite the fact that it could also often be energising and fun and a change from analysis), and recognise that my anxiety rides on surprises.
You're making me wonder how I would have processed the diagnosis if it had come before my burnout...........would I have known the things that I needed to protect myself from? Or would I have known it in theory but struggled to accept that there were real dangers there? Hmmmm...............