Understanding yourself & how Autism affects you: My Autistic Charter

This is extremely interesting to both use as an idea for my partner and see your perspective. Thank you for sharing. A lot of what you struggle with my partner has trouble with too. 

What a great idea. I feel I should do one of these for myself... and also know it's something I'm unlikely to get around to doing! I can pretty much reuse yours though so it looks like there's at least a few of us in your part of the village!

Thank you for sharing

Daisy

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 

I think that some changes that I have already made post brain injury such as switching from permanent employment to doing a couple of agency shifts a month, if that, will do for Autism as well as brain injury, I’m not really prepared, nor do I see the need to adjust that further. With other things that I do such as running my Beaver Scout Group, it’s only really an hour a week face-to-face, the rest is just admin which can be done at home in my own time. Can’t really adjust my children, they are as they are. I guess I have made some small changes since diagnosis, I tend to mostly socialise with other autistic people now, running my group for autistic women has enabled me to make links with a lot of other autistic women locally, a number of whom I would now class as friends, one has become a really good friend. A number of my friends that I had previously are very likely autistic, one has said she thinks she is autistic since I’ve been diagnosed, one is being assessed as I type. I must admit that I do find it a lot less exhausting socialising with other autistic people. I’m honestly not sure if I would benefit from any other changes!

That does sound a lot to cope with and I can understand why you don't want more of the same. Do you know yet if you would benefit from any changes? Or are you still mulling that over?

My resistance to making ‘reasonable adjustments’ to my life is twofold. I think what is described in the book that you are reading covers the first part. The second part of resistance is this. I’m quite open about the fact that I had a brain injury 12 1/2 years ago. It was an acute event and it took me from functioning at a good level studying for my MSc/working/bringing up my eldest on my own to a dysfunctional mess in a split second. I never lost consciousness and was discharged home after 12 days in hospital, only to discover that I didn’t seem able to do many of the things that I used to just ‘do’. I got so depressed that I had to go into hospital, I was so hopeless. ‘How’ could I ever learn to accept this disability that had been forced upon me? It took me years, several years of grieving; anger; disbelief and A LOT of hard work to get myself to a level where I felt that I was functioning at my optimum level and that still involved a lot of compromises, compared to what I had previously been capable of. I had to adjust every area of my life to make it manageable, I had to accept that I will never be capable of what I used to be capable of again. It’s something that I will never fully reconcile with, I still want my old brain back. Quite simply, I don’t want to have to go through that again! Have I not already made enough adjustments and concessions? Every area of my life has been changed and re-evaluated and it’s exhausting. Do I really have to do all that again now that I know that I am also Autistic?

We sound on exactly on the same wavelength!

I too have loads of academic achievements but find retirement now terrible.

Just got the books and started it,

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 :-)

First of all, none of this is trivial - everything you're going through is completely valid. We're all individuals with our own challenges and strengths.

Secondly, I absolutely love your dolphins/horses analogy. I feel like I still have a hoof in the water, but hopefully the gates to the field will open soon 

I like that phrase - "'No' is a complete 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.

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.

You write brilliantly, and your analogy is spot on!

You are very much among like-minds here. :-)

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 :-) 

Thanks DaveAsperg! I've also struggled with (or simply "experienced") suicidal ideation and I can trace this back to the first time in my life that I first had to deal properly with people, resolve conflicts, and take full responsibility for my own life by making some big decisions (up until that point, I had been sheltered by the fact that I drifted pretty effortlessly through the milestones of young adulthood). That was about 20 years ago now and those thoughts have resurfaced many times but not been constant.

The other factor for me is that my  self esteem was founded on my academic achievements, and I had no sense of self worth founded in the world of people. Now that I'm in mid life, and "conventional wisdom" tells us that it's time to focus on friends, family, relationships and doing good things for the community, I find myself at a loss; my accademic achievements are no longer in huge demand (my analysis skills are, but are employed in solving puzzles that should never have existed in the first place), I have never had a "warm, fuzzy feeling" from family, never made friends easily (and now rationalise that I don't need to or want to), and fail to comprehend that I could do anything for the community (which would also involve new random people and interaction).

So I sometimes think that I've had enough. I developed a gambling addiction too, and the anger that I directed at myself when I had big losses was close to getting me making plans. Thankfully, the shock of ideation tipping close to planning was enough to shake the illusion of fun enough that I haven't gambled for over a year and haven't looked back.

But the sense of "what's the point?" remains.

"The Nine Degrees of Autism" offers some hope; it's written by several wise autistic people who have made it to the far end and now feel a sense of achivement and purpose. When I've read it all, I'll be back to the forum with more thoughts I'm sure!

With your psychiatrist, I wonder if the "traditional" couch arrangement would help? I tried this once, and it means that your psychiatrist is out of sight, so all of the pressure for eye contact etc is absent.

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...............

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.

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 

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......

Excellent - thanks, I really like it when stuff I do turns out to be helpful to other people :-)