For those diagnosed, what level are you?

A straightforward answer is that I was diagnosed as Level 1 on the ASC support-needed scale. I can pass as neurotypical 99% of the time when in public. However I have problems connected to my autism, such as exhaustion from social interactions. I was at the Autism Show (conference) yesterday, and after getting up and having breakfast today had to go back to bed and slept a further two hours, I just needed the extra sleep to recharge my 'social batteries'. I experience sensory problems with: noise of many types, bright  light and some textures. I also experience anxiety in crowds and in making telephone calls. I am diagnosed with generalised anxiety disorder and social phobia.

If, like me, you can function in society apparently 'normally', but have definite problems arising from your autism, you are no less autistic than people who cannot function in society. The difference is not only connected with different levels of ability, but also with external perception. Someone who struggles but succeeds in functioning, often suffers as much as someone who is unable to function.

Interesting.  Nobody mentioned any support needs scale when I was assessed.  I think I've been passing as NT for most of my life though, with lots of anxiety and other issues just automatically pushed down/hidden and extensive masking.  The result was often that I got blamed and judged, including lots of internalised blame adding to the load. 

And so, for example, I was regularly given negative feedback at appraisals or reasons for being made redundant that, looking back, were linked to being autistic.  The phrasing would often be along the lines of "You're obviously very talented, but..." or "Why can't you be more like so-and-so (very confident NT type referred to) or "Well, we asked so-and-so for an informal reference and they said that you keep yourself to yourself" and on and on.  The fact was that I was always excuciatingly anxious and needed support and accommodations rather than blame.

So, yes, I'd say that apparently succeeding in functionning generally speaking, whilst quite often throwing out some rather conspicuous malfunctions due to extreme autistic anxiety has been akin to an invisible disability.  People's expectations of me were rather higher too, and the blame correspondingly harsh.  And I certainly need a lot of rest to recover from all of this.      

 

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."

Oh yes, the chasm.  I somehow expected (was led to expect) that, given my education, i'd sail into a rewarding job.  I then found myself stricken with nerves, self doubt and outright fear when I found myself facing the Grand Canyon, with the overwhelming feeling that others were already on the other side!

I totally agree.  No one ever really helped me with so many "soft skills."  I was very good at school, struggled with mental illness at university, but somehow got through it and even got a reasonable grade... and then discovered that life, and careers, need so many untaught skills and adherence to so many unwritten rules.  The difference between my book-learning and practical and social skills is not so much a gap as a chasm.

As I get older I'm getting more skilled at the sharp and cutting reply.

I'd have snapped back with "and how would you be able to work that out?" or even teh old favourite, "At least I have some!"

To be honest, it seems to make me more employable, with NT's and not less....

Oh wow!  This sounds so familiar!  I am certainly "anomolous" too!  Plus I've been driven to similar strategies just to survive in the workplace.  And sometimes it's felt like an enormous last ditch effort just before the inevitable occurs anyway.   But the fact that I always felt as though I was trying to inflitrate an organisation full of judgemental others probably indicates that the issues predated all of that and began earlier in life.  That sense of being different and, although feeling secure and accepted in my family home (which i appreciate not everyone has), it all being knocked out of me from my first day at school onwards.

I've sometimes felt like a lab animal in a rather complicated learned helplessness experiment because, with repeated negative experiences and over time, I often came close to feeling like giving up.  And conventional approaches to my extreme anxiety didn't help much because, after all, I still knew deep down that I was different.  I'd sort of brainwashed myself with a top dressing of pop psychology and self help books, with the aim of being like others and freeing up a kind of "normal" version of me that I assumed lay inside.  But then, in one of the books (The Curse of the Self) the following statement leapt out:

"A round peg trying to fit in a square hole does not fit, even if the peg believes it is square."

So yes, minority stress.  It does really help to realise that, although we're in a minority, there are still rather a lot of us and we can support each other.  And I first came across ideas around minority stress from watching Youtube videos and webinars by Kieran Rose and Monique Botha.  They shift the emphasis onto society and workplaces doing better, instead of us constantly trying to find a way in and then, once we are in, struggling to remain included and accepted.     

I find it a really compelling subject and, if you're interested, here are a couple of links:

https://www.youtube.com/watch?v=Ijap1yOBVd0&t=17s

https://www.ne-as.org.uk/post-conference-services

In fact, I think I'll have another look at Monique's talk myself.  :)

Jenny Butterfly said:

Minority stress is a big issue.

You've just described a massive lifelong issue for me  in five words. That's so well put and it's really moved me. I have gotten very ill at times with the crushing sense of it all. At my worst (when the world tilted on its axis after a chance remark in 2018 caused me to see stuff I'd been - somehow! - always looking at in a distorted way) I was running and re-running the numbers to see if I'm anomalous, or scarce, or acceptably diffuse in society on a number of fronts. I don't even have a mathematical brain and I still put myself through intricate and endless calculations (cross-referencing research, and a measured charting of everyone I've ever known) until I made myself so nauseous of it all that the only thing to do was let go out of exhaustion. Sometimes I relapse. When I do, I know I'm going the scenic route to what should be a short-cut (the inescapable  conclusion that I am 100% of my own unique experience, just like everyone else), but I know no other way to be. It's my nature. Too individualistic to compromise on how I know I need to live, yet too self-consious and apologetic for existing that tortuous comparison, and waiting in vain for faster societal evolution,  are inevitable. 

Employers, rather foolishly, tend to value soft skills of hard technical ones. This is because they are generally more emotionally invested in the status quo than developing and ensuring the long term success of their businesses (remembering that a manager for life isn't really a thing any more). Short termism tends to lead to prioritising short term gains by optimising the status quo. Easier to have a great marketing team today then spend a year developing and a year retooling to manufacture a truly great product down the line. Of course in the long term thats how big companies fail. By being out innovated by smaller companies with less invested in the status quo. Its why big companies are so desperate to buy out promising start ups. Not to gain access to their tech now but to make sure the tech doesn't come to market before their ready to compete with it.

Honestly, I think one of my main issues over the years has been precisely that - a feeling of lack of agency or autonomy in many of these situations. 

Our education and, for many, parenting too, is replete with such messages and in adulthood they just get repeated as self evident.  All about as useful and compassionate as someone (often in a position of relative power) telling another person (often in a one-down position and a great deal of distress) to "Pull yourself together", "Just don't think about it" or "Shape up or ship out!".  Combined with other statements often levelled at neurodivergent people (I'm thinking of "You're just too sensitive!", "Where's your common sense?" or "You're over-reacting!" etc etc) it can only serve to make us feel more alienated and outcast.   Minority stress is a big issue.    

Once, just before I was made compulsorily redundant in a role, a manager said to me, in front of others,  "I seriously doubt your thinking processes!"  Well, actually I doubted hers (and so did some of my colleagues), but she was in the position of power.  And if I'd actually been identified as autistic at that point I'll bet she wouldn't have dared.

Yes, all of these statements feel like just pat responses from non autistics who either can't or won't understand.  They often seem unable to extend themselves in this way and yet we're the ones who are labelled as "inflexible" in our thinking!  

When I look back, I can see quite clearly who they wanted in the post and it wasn't me, no matter how suitable and well qualified I looked on paper.  Actually, and long before I knew that I'm autistic, I could always tell who'd be wanted for the job and who'd be most successful.  And, again with hindsight, I now know that the person they generally wanted was the most neurotypical person they could find.  I mean, they say they encourage "thinking outside the box" but then they really seem to reward the most convergent thinking and it often just feels like a majority rule situation in which successful NTs select others in their image. 

So I sort of recognised the magic formula for employability and yes, I could pretend to be that person.  For a while.  But it was never sustainable and I could feel the people who'd interviewed me wondering what had happened.  I was often in a "dynamic, fast paced environment" with lots of deadlines in a noisy, open-plan office and I basically wilted then burnt out.  But kept showing up and doing my best anyway.  It wasn't enough but it kept me on the payroll for a bit longer.  And I felt bad about it but really the bad thing was that there was no support or accommodations and nobody, including myself, knew anything about neurodiversity.       

Of course, when I studied management I was encouraged to read about the need for divergent thinkers because I could see myself as such (and now, upon formal diagnosis, it feels as though I have a certificate to prove I'm divergent!).  But the message was very confusing to me because the demand was, "Think outside the box" or "Get out of your silo" but then also, "No!  Not like that!"  

Sigh...   Never going back into those kinds of toxic workplaces. 

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.  :)

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.

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.

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.

As I get older I'm getting more skilled at the sharp and cutting reply.

I'd have snapped back with "and how would you be able to work that out?" or even teh old favourite, "At least I have some!"

To be honest, it seems to make me more employable, with NT's and not less....

Oh wow!  This sounds so familiar!  I am certainly "anomolous" too!  Plus I've been driven to similar strategies just to survive in the workplace.  And sometimes it's felt like an enormous last ditch effort just before the inevitable occurs anyway.   But the fact that I always felt as though I was trying to inflitrate an organisation full of judgemental others probably indicates that the issues predated all of that and began earlier in life.  That sense of being different and, although feeling secure and accepted in my family home (which i appreciate not everyone has), it all being knocked out of me from my first day at school onwards.

I've sometimes felt like a lab animal in a rather complicated learned helplessness experiment because, with repeated negative experiences and over time, I often came close to feeling like giving up.  And conventional approaches to my extreme anxiety didn't help much because, after all, I still knew deep down that I was different.  I'd sort of brainwashed myself with a top dressing of pop psychology and self help books, with the aim of being like others and freeing up a kind of "normal" version of me that I assumed lay inside.  But then, in one of the books (The Curse of the Self) the following statement leapt out:

"A round peg trying to fit in a square hole does not fit, even if the peg believes it is square."

So yes, minority stress.  It does really help to realise that, although we're in a minority, there are still rather a lot of us and we can support each other.  And I first came across ideas around minority stress from watching Youtube videos and webinars by Kieran Rose and Monique Botha.  They shift the emphasis onto society and workplaces doing better, instead of us constantly trying to find a way in and then, once we are in, struggling to remain included and accepted.     

I find it a really compelling subject and, if you're interested, here are a couple of links:

https://www.youtube.com/watch?v=Ijap1yOBVd0&t=17s

https://www.ne-as.org.uk/post-conference-services

In fact, I think I'll have another look at Monique's talk myself.  :)

Jenny Butterfly said:

Minority stress is a big issue.

You've just described a massive lifelong issue for me  in five words. That's so well put and it's really moved me. I have gotten very ill at times with the crushing sense of it all. At my worst (when the world tilted on its axis after a chance remark in 2018 caused me to see stuff I'd been - somehow! - always looking at in a distorted way) I was running and re-running the numbers to see if I'm anomalous, or scarce, or acceptably diffuse in society on a number of fronts. I don't even have a mathematical brain and I still put myself through intricate and endless calculations (cross-referencing research, and a measured charting of everyone I've ever known) until I made myself so nauseous of it all that the only thing to do was let go out of exhaustion. Sometimes I relapse. When I do, I know I'm going the scenic route to what should be a short-cut (the inescapable  conclusion that I am 100% of my own unique experience, just like everyone else), but I know no other way to be. It's my nature. Too individualistic to compromise on how I know I need to live, yet too self-consious and apologetic for existing that tortuous comparison, and waiting in vain for faster societal evolution,  are inevitable. 

Honestly, I think one of my main issues over the years has been precisely that - a feeling of lack of agency or autonomy in many of these situations. 

Our education and, for many, parenting too, is replete with such messages and in adulthood they just get repeated as self evident.  All about as useful and compassionate as someone (often in a position of relative power) telling another person (often in a one-down position and a great deal of distress) to "Pull yourself together", "Just don't think about it" or "Shape up or ship out!".  Combined with other statements often levelled at neurodivergent people (I'm thinking of "You're just too sensitive!", "Where's your common sense?" or "You're over-reacting!" etc etc) it can only serve to make us feel more alienated and outcast.   Minority stress is a big issue.    

Once, just before I was made compulsorily redundant in a role, a manager said to me, in front of others,  "I seriously doubt your thinking processes!"  Well, actually I doubted hers (and so did some of my colleagues), but she was in the position of power.  And if I'd actually been identified as autistic at that point I'll bet she wouldn't have dared.

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.  :)

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... 

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.