"It's like you are just a spectator in this thing": experiencing social life the 'Aspie' way

Thankyou, Tom and Sunflower, those are two excellent articles that I'll definitely be sharing.

Aside from how recognisable the reports of the subjects are, both articles support a point of view that I've been slowly drifting towards ever since my diagnosis.

Currently, the social aspects of autism are still considered its major diagnostic signs; our sensory, attentional, and cognitive experiences are barely mentioned, just as the diagnostic manuals don't mention melt-downs, shut-downs, burn-outs, or a whole host of other effects that we all know and love. To me, this traditional pathology increasingly looks as if it's back-to-front.

In my opinion, the sensory and cognitive differences seem to be the key to what autism actually is. The stereotypical social "impairments" are just the quite predictable consequences of how these differences affect our social awareness when we interact with other people. These differences affect us from the moment we're born, of course, so development of all social and communication behaviours is affected by constantly having to work from a different set of information about the world than most other brains would perceive, and attention and filtering functions which profoundly change what information we're even able to perceive.

I also liked the way that the articles emphasised that misinterpretations are actually skewed towards autistic people being misinterpreted rather than doing the misinterpreting (sometimes called the "double empathy problem"). This seems to be a very common experience. Of course it is, as the onus is always on us to be the "interpreter" whichever direction the message is being passed in. Neuro-typical people don't generally ever try to "pass as autistic", even for the occasional short interaction, never mind in every single encounter as a "passing" autistic might do, or might even feel obliged to do (I know I always felt obliged to before my diagnosis, and it's still a very strong drive even now).

Blank said:

Finally an explanation of 'taking things literally' which I figured was just for proverbs and the like, but that idea never seemed right :-)

Yes. I think that people very often get the idea of autistic "literalness" a bit wrong. There certainly are autistic people who's different language development makes understanding figures of speech difficult, but many of us don't seem to have much problem with the semantics of figurative language. What we do often seem to struggle with is what linguists call "pragmatics" - how the meaning of an utterance changes depending on the intent of the speaker (including the speaker's stance towards the context). It's not about misunderstanding the range of possible meanings for a particular set of words, it's difficulty picking out the right meaning because of difficulty assessing the speaker's mood, what the speaker believes about us, the formality of the occasion, how private the conversation is, previous conversations that have a bearing on the current one, and so on.

Blank said:

And that part about having to restart everything after having taken a 'break' - so recognisable.

Yes, me too. After spending an age alternating between beating myself up and giving myself a pep talk, I sometimes pluck up the courage to leave the house, open the front door, and then ask myself; "How long is it since I had a conversation with someone? Will I be able to remember how to do it? Will I even be able to remember how to talk?". Although I do often isolate myself for much longer periods, it only takes a day or too holed up in my sanctuary for this to happen.

Thanks for this, Trogluddite.  You put into words what I think, but don't have the ability to express.  I agree with all of what you say.  I, too, constantly feel that 'obligation'.  I think, since diagnosis, I have actually begun to behave more 'autistically'.  By this, I don't mean that I'm putting on more of an act; rather, I'm putting on less of an act.  Less of a neurotypical act.  I think the issue I've had at work recently (I return tomorrow after almost 3 weeks of sick leave) has actually helped my employers to understand things much better.  My meeting last week with the behavioural team gave me the opportunity to explain some 'back-story' to them, which I think has given them more insight into why I responded in the way I did with the incident that led to my meltdown.  It still feels, though, like trying to explain what life is like as an aardvark to a herd of cows!

The 'literalness' thing - yes, we are generally good at semantics and figurative language.  Where I fall down - and always have - is that I tend to take what I'm told literally.  So I'll miss it when someone is pulling my leg or in some other way playing a joke.  "Lighten up!  I'm joking!", or variations on that, are things I hear all the time.

I'm an isolationist.  I'd beat Donald Trump at that!  During these almost three weeks, I've spent much time indoors in my 'safe space'.  But I go out every day to get the shopping I need for the day, so I get some form of interaction with people - even if only at a phatic level.  Tomorrow, I'll be right back in the throng again.  I could have returned earlier, but I thought it would be good to just have two days at work, then a three-day break again, then four days, then another three-day break.  The week following that, I have two days annual leave booked (mum's birthday time), so I'm only actually in on the Tuesday and the Friday.  This, I think, we give me a bit of a staggered reintroduction, which I feel I need.  Next week, too, I'm having the first of what is now going to be a two-weekly 'catch-up' meeting with someone from behavioural support.  I think I have a lot of support on my side at work.  Most of my colleagues are people who seem to like me.  This one person, though, is going to be a problem.  We don't have to work together any more, at least.  But I find it hard being around someone like that.  If she tries being civil, I'll be civil in response - but my natural nervousness will obviously show through, because it will be like revisiting the site of trauma.  I'll just have to play it all by ear for the time being.

I felt rather embarrassed at explaining to the team last week that this has all come about over something that most people would regard as trivial.  But 'unfriending' and 'blocking' someone on social media who you actually work with everyday, and then behaving as if nothing has happened, would send out confusing signals to everyone.  She's done it with other staff members, and their responses have generally been 'Well, she's blunt.  She can get on with it.'  I can't do that.  To me, it's been a major problem.  I hope they do understand that now, but I can't help feeling they think I'm making a big fuss over nothing.

Martian Tom said:

I think, since diagnosis, I have actually begun to behave more 'autistically'.  By this, I don't mean that I'm putting on more of an act; rather, I'm putting on less of an act.  Less of a neurotypical act.

Even a little before my formal diagnosis, I started to do this a little, influenced by the autism-specific counselling I was having at the time. Oddly enough, I didn't actually realise that I'd lifted my mask a little at first, it only came to me after a couple of weird experiences. Firstly, one of my closest friends said that he thought the counselling and my pending assessment had "made me worse". Secondly, my boss at work pointed out that I'd been speaking much more slowly than usual in our one-to-one meetings. The fact that I was very burned out at the time will have contributed to this, as that makes masking so much harder, but I do think in retrospect that the counsellors encouragement to be less fearful of pulling the compromises in interactions more in my favour had its part to play.

I eventually lost the job just before my assessment, so I've not had time to really experience working life with less masking, but I would say that, on the whole, lifting the mask a bit has improved my social life, despite a few uncomplimentary reactions at first.

Martian Tom said:

It still feels, though, like trying to explain what life is like as an aardvark to a herd of cows!

Oh god, yes. The trouble is that even open-minded people who truly want to know seem to expect that it's like a physical medical condition where you can just point at a particular thing that hurts which will make it clear why you struggle with a particular task, and that it will be a static thing which can be "fixed" in the same way in all situations. It's been four years now since my diagnosis, and I'm still learning new things about how autism affects me every day. It's just not possible to condense down even one specific trait to a couple of conversation-friendly sentences, and every trait interacts with every other, and they all interact with circumstances and the environment.

I think there are some very profound areas of communication which will always be very difficult to surmount, and many "awareness" campaigns seem to bury their heads in the sand about this. I think there are certain aspects of psychology (both autistic and non-autistic) that will inevitably lead to problems with communication. In particular, there seems to be an idealised assumption that once non-autistic people become "autism-aware", they'll be able and willing to selectively turn-off their internalised social instincts.

I think that one of the biggest imbalances in the "double empathy problem" is that, as autistic people, we are painfully aware that we must second guess our innate instincts if we're to behave acceptably, whereas non-autistic people treat their social instincts almost as if they don't exist because they are internalised to the point of working almost entirely sub-consciously. When a non-autistic person gives us the cold-shoulder because of our "uncanny valley" effect, their social instincts are adapting their behaviour to the situation almost invisibly to them, with barely any awareness of how that decision was made, or even that a decision was made at all. Unlike you and I, they haven't had several decades of practice since early childhood development at overriding their innate instincts, or even noticing them. How can they begin to imagine life without these innate skills that they don't even realise that they have, and only notice in others by their absence?

Amongst ourselves, it's relatively easy to identify common behaviours and attach our own jargon to them (melt-down, shut-down, burn-out, etc.), but when there's little commonality of experience, and we have to use language which evolved primarily to describe non-autistic experiences, it is so hard to find words which truly explain anything to non-autistic people (hence why I enjoy so much reading your excellent use of metaphors in your writing!)

Martian Tom said:

I think, since diagnosis, I have actually begun to behave more 'autistically'.  By this, I don't mean that I'm putting on more of an act; rather, I'm putting on less of an act.  Less of a neurotypical act.

Even a little before my formal diagnosis, I started to do this a little, influenced by the autism-specific counselling I was having at the time. Oddly enough, I didn't actually realise that I'd lifted my mask a little at first, it only came to me after a couple of weird experiences. Firstly, one of my closest friends said that he thought the counselling and my pending assessment had "made me worse". Secondly, my boss at work pointed out that I'd been speaking much more slowly than usual in our one-to-one meetings. The fact that I was very burned out at the time will have contributed to this, as that makes masking so much harder, but I do think in retrospect that the counsellors encouragement to be less fearful of pulling the compromises in interactions more in my favour had its part to play.

I eventually lost the job just before my assessment, so I've not had time to really experience working life with less masking, but I would say that, on the whole, lifting the mask a bit has improved my social life, despite a few uncomplimentary reactions at first.

Martian Tom said:

It still feels, though, like trying to explain what life is like as an aardvark to a herd of cows!

Oh god, yes. The trouble is that even open-minded people who truly want to know seem to expect that it's like a physical medical condition where you can just point at a particular thing that hurts which will make it clear why you struggle with a particular task, and that it will be a static thing which can be "fixed" in the same way in all situations. It's been four years now since my diagnosis, and I'm still learning new things about how autism affects me every day. It's just not possible to condense down even one specific trait to a couple of conversation-friendly sentences, and every trait interacts with every other, and they all interact with circumstances and the environment.

I think there are some very profound areas of communication which will always be very difficult to surmount, and many "awareness" campaigns seem to bury their heads in the sand about this. I think there are certain aspects of psychology (both autistic and non-autistic) that will inevitably lead to problems with communication. In particular, there seems to be an idealised assumption that once non-autistic people become "autism-aware", they'll be able and willing to selectively turn-off their internalised social instincts.

I think that one of the biggest imbalances in the "double empathy problem" is that, as autistic people, we are painfully aware that we must second guess our innate instincts if we're to behave acceptably, whereas non-autistic people treat their social instincts almost as if they don't exist because they are internalised to the point of working almost entirely sub-consciously. When a non-autistic person gives us the cold-shoulder because of our "uncanny valley" effect, their social instincts are adapting their behaviour to the situation almost invisibly to them, with barely any awareness of how that decision was made, or even that a decision was made at all. Unlike you and I, they haven't had several decades of practice since early childhood development at overriding their innate instincts, or even noticing them. How can they begin to imagine life without these innate skills that they don't even realise that they have, and only notice in others by their absence?

Amongst ourselves, it's relatively easy to identify common behaviours and attach our own jargon to them (melt-down, shut-down, burn-out, etc.), but when there's little commonality of experience, and we have to use language which evolved primarily to describe non-autistic experiences, it is so hard to find words which truly explain anything to non-autistic people (hence why I enjoy so much reading your excellent use of metaphors in your writing!)

I hope it has the desired effect, it certainly deserves to. Of course, you can never convince someone who doesn't want to be convinced, but better understanding by those who are already your allies should still be a big help in giving them the confidence to back you up when you need it.

I hope your phased return to work goes well; it certainly always worked better for me than the culture shock of jumping in at the deep end.

Best wishes.

Thank you.  I was thinking about that again earlier in trying to find an analogy to summarise what you were saying in your first response above.  I don't think any of them really does it justice, though.

We know the familiar ones.  Linux OS in a world of Windows.  Cat in a world of dogs.  Bike in world of boats.  I was trying to think of something more tangible in the way of how we perceive, interpret and respond to information, stimuli, etc.  It's like with different radio receivers.  We pick up the same signals and programmes, but we pick them up on different frequencies, and using different reception devices.  So, like, 99 people are on FM, and we're on AM.  99 people are digital, and we're analogue.  It all does the job - but differently.

I've redrafted my Aspie Life piece and sent it to the behavioural team.  I'll also take some copies in tomorrow.  I don't know if it'll help.  But one can only try!