For those diagnosed, what level are you?

And it's there for ALL of us, too...

And thank you for getting my point. It IS a horrible statement, one of many fed to us as children and designed to rob us of our "agency".

Yes, very good to turn this horrible statement on its head because it IS what it's there for.  :)

How are you defining 'support' there though? That's the bit that's eluding me - the consensus defintion as to what comprises it. Is it formalised agency-regulated assistance? Family input when advice or emotional support is sought? Better self-care with rest? Something else? All of the above? The levels seem to leave implicated support as a nebulous concept with vague parameters.

Whatever level it is when a person is was always very employable, but could never get any i'm on that level.

Yeah, 'must do is a great master'. One loophole I've found for breathing space is to secure a co-own arrangement on my property. The rent 'half' is smaller than the buy 'half' (actually 60%) and it's like suddenly having been given a (modest) pay-raise, after many years of digging myself out of debt on the last negative equity situation. Any angle you can find to escape the ultra-orthodox financial pressures can help a lot, not that I'm not feeling the pinch right now- like everyone... 

Oh yes, those sorts of comments make my bood run cold: 'Why didn't you apply for that post? You're more than capable...' Well meant of course, but you feel judged and massively misunderstood at the same time. 'YOU're just as smart as anyone else doing those higher roles'. Well, perhaps- but I'm differently intelligent, not the NT kind where the expression of an abstract understanding of the generalities of something magically translates into sythesising that into inspired and co-ordinated action. I need to be in a predictable and existing rule-governed role, not one where innovation and appropriately improvised delegation are fundamental and recurring facets. But try convincing someone that that's not just giving oneself 'not enough credit'.Ultimately I just have to concede that my interiority can never be adequately communicated in this way, and I do my best to try and care less and less about that kind of unconsious societally normative value judgement (lazy, unambitious - not that I care much about the latter, ambition with a captial A is such a weird concept to me, though I'm glad many have it or where would we be?) of my worth because I happen to know what will work for me long term.

JennyButterfly, that rings so true for me as well. I've generally had good appraisals over the years, but had a catastrophic one in 2016 that completely blindsided and deeply hurt me as I hadn't realised how poorly I was perceived by my then boss. She's a really nice person, which made it even worse - I had to accept that it wasn't unfair or vindicitive, I just hadn't adjusted to new tasks/a new role as adeptly or quickly as my colleagues who started equivalent posts at the same time. It coincided with some horrendous stuff happening close to home with family as well, which was occupying the entire bandwidth of my thoughts for a massive part of that year but I hadn't felt able (or that it was appropriate) to talk about it. I was also having some weird IT thing happening where about a third of my (and only my) workflow wasn't being captured/recorded as a measurable daily output. And I was overly-fixating on the granular detail of 'telling the story' in my record keeping, which was the legacy of the previous dept. I'd worked in where that was a little more contextually appropriate. So my already fragile self-esteeem shattered and I was broken for such a long time. In some ways I still am. The shame runs very deep, and there's a feeling that my true best efforts weren't seen. The awfulness caused a breakdown - and crying in front of one's line manager, even briefly, is so embarrassing for both parties. Subsequent appriasals have been fine (though I continue to dread and hate them), but I'm more established into the routine of the department (and intend to stay in this role long term) and can pace myself with more intuitive appropriateness to what a decent or good  volume of work as a mean daily average should look like. So that one year remains anomalous, but is with hindsight clear evidence of a neurodivergent brain and dwindling resilience/energy levels, and the distraction of private suffering, and a change of remit, all becoming the perfect storm. 

That also makes me realise that *self*-care beyond NT standards and without guilt *is* support - the extra hours of rest, doing 'nothing' to let the brain de-fragment and executive function retreat from burnout, and so on, are vital for any sort of long-term health or even short-term funtcioning. My mother used to worry about why I was so tired all the time, would fall asleep during the day so often, and wasn't 'driven' enough about all those 'You know what you should do?'s that she and my dad would regularly throw my way, making me feel quite inadequate and ill-equipped for life despite their best intentions. Now I realise that keeping ticking over for the 9-5 (in the various forms it has taken over the years), as well as even securing those 9-5s, was a pretty good effort all round given what I now know.

That description so precisely maps to my own that it's scary! Thank you so much for putting that so eloquently, and for validating my own experience too. I hope despite the massive battery drain that you got something positive from the conference.

I'm definitely not un-traumatised! The last few years in particular have been a massive struggle mentally and emotionally. I suppose paying to see a therapist, and talking some things through with trusted people, etc. all counts as support. Those things are ongoing.

I was never given a level. I scored 3 for social communication= classical autism level and 5 for social interaction = Asperger's level. That resulted in an Asperger's dx. In terms of 'support needs' I'd say level 1 on a good day/1.5 on an average day and 2 on a bad day.

Actually, the world does owe you a living...

It is what it is there for!!

Ah yes, the general consensus.  This is up there with general knowledge and common sense but much of it has somehow passed me by. 

Most work always felt like modern slavery to me and it only reinforces that feeling when the response is that, "The world doesn't owe you a living", rather than looking at ways of improving things or making it more manageable.  Running into takeovers, mergers or other reorganisations every couple of years definitely doesn't help either. 

My only way through has been to (eventually!) sidestep it and work for myself but I would never have been in any position to do this straight after leaving further education.  It was always a choice between having nothing (of which I'd already experienced too much in childhood) or attempting to play the same game as everyone else.  I just had to hope that I could stay on the payroll for long enough to gain employee rights and protections and pay off a chunk of the mortgage.    :(   I did get some decent redundancy packages, mind, which also contributed towards becoming mortgage free, but some of this came at the expense of my mental health.   

Over and Over again. When I did find my feet a bit it was in a period where the average life of a company was about 2 years (it seemed) Every time I found my feet in the nineties the company got taken over and the culture changed to a more unpleasant one. Every time.

Now to be honest it seems we have modern slavery where the whip has been replaced by the mortgage. The results of working are exactly the same, rebel too hard, and you end up on the streets as staving fugitive, being hunted.

Maybe that's how it is supposed to be... That seems to be the general consensus.

Yes, those were the skills for which I felt completely unprepared by my education.  Yet somehow doing well in terms of academic qualifications was seen to be an access route for these jobs.  I never really squared that circle and many of my issues drew comments along the lines of, "But you're so intelligent, so why can't you...?"   The expectation always seemed to be that I'd somehow just magically know things I'd never been taught.  

I wonder how many of us fall off the end of the education system and into nightmare jobs that can never possibly work for us. 

Jenny Butterfly said:

hit the ground running

Jenny Butterfly said:

liasing with lots of others

those always scare me

but there isn't many jobs without that

Jenny Butterfly said:

"I'm drowning here, but I hope I don't look like a fool while I do so!"

very funny

I was good at exams too, mainly because it was math, where you can give and you expected to give specific answer

but literature was total failure, my style wasn't considered to be worth more than dumping in a bin

Yes, I always wondered why I felt so exhausted and couldn't cope with the long hours culture when others seemed to thrive or leastways just accept it then still go out on evenings and at the weekend.  

I'd have to take ages to rest and even then spend much of my time angsting over the various problems and possibilities that I thought were about to hit me in the face when I went back into the office.  Thinking about it, an awful lot of my time has been spent in fear and dread and it was always hydra-headed so that as one thing abated, another took its place.  

Funnily enough, I was actually very nervous but basically able to perform in exams because I saw these as just being between myself and a bit of paper.  I also thought that there was a reliable format to such things too, which kept me feeling safer - i.e. the textbooks basically gave me the answers before the questions were asked, if I swotted long and hard enough (fuelled by extreme anxiety, obviously).   But in "real life" I really struggled when questions and problems were raised for which I couldn't possibly have swotted or had any previous knowledge (e.g. I could pass the accountancy module on IT with flying colours, but I couldn't organise and oversee the implementation of a new financial system, involving liasing with lots of others then delivering the training - what on earth was wrong with me?).  And the expectation from others that I would step up, "hit the ground running" and perform, just added to my fears, making failure or avoidance more likely.

My anxiety analogy - it always felt like walking the plank.  I started off feeling I could just about manage and it might be different this time but the more steps forward I took, the more wobbly and unstable I became.  Then, in the end, it took hardly anything from what I felt to be a hostile audience to cause a major bounce and dislodge me completely.  The fear of failing was a fear of falling, hard and conspicuously, with a ridiculous concern about the judgement and comments from others rather than my own pain.  Sort of, "I'm drowning here, but I hope I don't look like a fool while I do so!"       

Thank for sharing that! That definition of support level needed for level one actually does fit me after all. I have had very strong social anxiety and generalised anxiety all my life, and no amount of CBT of medication helped (I understand why much better now of course) and my planning and organisation skills and time management are rubbish. I got very average scores in school thanks to great scores in coursework being cancelled out by terrible ones in exams. 

I also recognise your experience of the workplace and how much effort goes in to what’s more of a low effort flow-state for others. Making additional challenges beyond the fairly routine very taxing. 

Ah, yes, a quick search and I think I'd probably be categorised as this - "ASD Level 1 – Level 1 ASD is currently the lowest classification. Those on this level will require some support to help with issues like inhibited social interaction and lack of organization and planning skills."

It has meant that I seemed to manage perfectly well for a lot of the time but also that it took a lot of effort and suppression or hiding of difficulties, especially in the workplace, where lots of interactions were usually expected and I seemed a bit "off".  Generalised anxiety and some more specialised phobias around driving and public speaking haven't helped.

Looking back, i wonder how many others were actually in the same boat and also masking.  I did manage to "vibe" with a few colleagues and now I'm thinking, "Oh.  I bet they're autistic too."

Probably not.  But I imagine it depends upon the environment and how safe and confident you feel.  And you might be that rare animal, an untraumatised autistic person. 

I seemed to  function independently for most of my adult life (incl. jobs, mortgages, marriage etc), but often things would come crashing down around me when I failed to deliver on something apparently easy and obvious.  And, although I had the trappings of conventional success, my inner world was something else entirely.  

I think it can be complicated.