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. 

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. 

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.  :)