Awkward from the inside: what it's like being the person who looks awkward

Sometimes I think things are going pretty well and I'm managing OK, and I was just thinking over the last week or so how I was really pleased that although I am tired and busy I've not been feeling too 'autistic tired.'

Then along came today and reminded me that really I am autistic, and I'm just not like other people, and I can't do the things they do.

Two events during the day reminded me of this, the first coming straight away when I got to work. One of my colleagues has been going through an absolutely terrible time with some really sad and traumatic stuff to get through, and she started telling about it mostly to my other two colleagues (she knows them well, but doesn't really know me as I only started there a few months ago when the stuff started happening, so I don't feel I can really ask about it) while I was also standing nearby.

Well, I have so much empathy for her, I just want to be able to say or do things make make it better for her, or at least for her to know that is my intention. But I have no idea of the things to say or do. I don't know her well enough to go and give her a hug, and she hasn't told me personally about any of it, which I wouldn't if it were the other way round, but obviously she has talked about it when I'm there so I know about it. I didn't know whether I should go away and busy myself with another job so she could talk to them, or whether I should join them, I had no idea of anything that would be the right thing to say (luckily the other two had loads of great words) and couldn't give her a hug or anything.

I think this is how the whole empathy thing plays out in real life for me. I care so much, and I understand others' pain, but I am often incapacitated to do anything about it, unless I know the person very well. So it looks like I don't care, which is just the opposite of the truth. Or even worse, I could make it worse by being awkward, so I try not to do that, and not to give the impression of being uncomfortable, because that's the last thing someone in that situation needs.

I wish people could know I want to be with them in their sorrows and trials, their downs and ups, and I want to help. Maybe one day I'll learn how.


The second situation was a celebration for a colleague I barely know, with basically all the staff present. Painfully awkward from beginning to end. I stuck myself like glue to the two people I work with and copied them. Where do I walk? Where do I sit? Quick, bag a seat next to person I'm hiding behind. Shouldn't have my back to anybody, but have to here. Who should I have my back to? I can't just do nothing, must follow them to get cake or people with think it's weird if I don't eat anything. Accept a drink, any drink - it's too difficult to choose and you're weird if you don't have one. Just say anything's fine, or "surprise me" (not "whatever": that's rude even if it means the same thing). Listen to the conversation, focus, stop zoning out and examining your fingernails, don't rub your nails on your face, make appropriate noises and faces so people don't notice you haven't said anything. Safer not to say anything even if you wanted to: it might go wrong, people will look, it won't come out how you meant, people won't know why you even said it. It might stop the conversation. So just make the noises and faces. How soon can I leave? How do I get out? Who do I need to say goodbye to? What do I need to do with my glass and rubbish?

And go home. To an empty house: I need that right now.

Intense World Theory

I said I would come back to the Intense World Theory that I discovered, so I am finally here to fulfil that promise. The theory is detailed in a paper by Kamila and Henry Markram, 2010 (Lausanne) and proposes a unifying neural model to explain autistic spectrum disorders. Markram and Markram study local microcircuits in the brain (focussing on the neocortex and amygdala) and propose that they are hyper-functioning in the brains of people with autism, specifically displaying hyper-reactivity and hyper-plasticity. (see Introduction for more detail http://journal.frontiersin.org/article/10.3389/fnhum.2010.00224/full)

Which is a lot of big words. Basically, if I am correct, the researchers think that particular circuits in the brain are working overtime reacting strongly to input and remembering its reactions to inform future preferences. That is a very basic summary: really, you're better off reading it from the source above.

The researchers describe four areas of effects of the hyper-functioning microcircuits which impact how people with autism experience the world: hyper-perception, hyper-attention, hyper-memory and hyper-emotionality.

Hyper-perception
Various circuits (differing from person to person, hence the very individual expresssions of ASC) have a loss of inhibition and are therefore hyper-reactive, leading to "vulnerability to sensory overflow. Consequential behaviour would be panic, aggression and withdrawal."                              

Hyper-attention
This sounds as though the brain gets 'locked into' a circuit, where a circuit is activated and then continues to reverberate, or repeat itself and is difficult to interrupt. This brain activity is clearly linked to difficulties in transition and shifting attention for people with autism, and to fixated attention on matters of interest. Also, autistic people "may seem distracted and disengaged, but are actually hyper-focussed on internal processes."

Hyper-memory
Here it is proposed that early learning is strongly imprinted and not easily over-written. Once something has been learnt it is very hard to unlearn, explaining why people with autism find it very difficult to address problems or tasks in a new way. Also, there may be displayed "idiosyncratic, albeit exceptional memory capabilities."

Hyper-emotionality
Quite contrary to many previous models of autism, the Intense World Theory suggests that in autism there is actually an enhanced sympathetic response to social content as well as to novel or sensory rich content and negatively associated stimuli. This is thought to lead to enhanced fear conditioning and avoidance of high-emotion stimuli (eg. eye contact) as well as avoidance of novel environments "due to fear of surprises that arise from over-generalisation of previous negative associations." Behaviours displayed may seem unpredictable, exaggerated, extreme or inappropriate.

The writers conclude that:

"In contrast to other deficit-oriented theories of autism, the Intense World Theory points out that enhanced brain functioning may lie at the heart of autism. In this light, autistic individuals may in general – and not only in exceptional cases – exhibit enhanced perception, attention, and memory capabilities and it is in fact these capabilities, which may turn the world too intense and even aversive and lead to many of the autistic symptoms including withdrawal and social avoidance".

Obviously this is a painfully tiny summary, and quite possibly not a perfectly true representation of the research, so please go and do some further reading and come back with questions! The theory is still fairly controversial I think, but there are parts of it that seem to make a lot of sense to me.

I would say the reason I avoid emotional stimuli is definitely due to being overly sensitive, getting overwhelmed by people's insides and not knowing what I am supposed to do with that stuff or how I can make someone feel better or show them I am happy with them. Hyper-memory I think also affects me quite strongly: I tend to be pretty rigid in my approach to many things (probably much to the frustration of Mr Peggy!), to the extent that I feel like I am doing something wrong if I deviate from my own expectations. The other two areas also add up with my and many others' experiences, so if you would like any more information/anecdotes/thoughts on any particular areas, just let me know!

The E word

People with autism lack empathy. Every layman knows that, right?

Right, but it seems that most people that aren't laymen (let's call them standmen, just for the fun of it) realise that this is often not the case. 

I found this out through a very little of my own research. I wanted to understand why I react in certain ways to certain things, and how what happens inside me can possibly match up with my diagnosis. (Resisting the temptation to rant here about the need for educating people - myself included - beyond the decades-old stereotypes...)

I had made a few observations about myself:

• I get really upset by sad things happening in films. More detail on this later.
• I hate to watch or think about violence. I don't understand why anybody would want to. Somebody is hurt by it and it's horrible.
• Someone can tell me about something terrible and I won't really react inside or out, yet I can be in floods of tears just reading about something vaguely emotional, never mind it happening in an audio-visual format.
• People throughout my life have commented that I don't seem to care about things, but these are actually the very things that strike me to the core.
• If something is important to me, I probably can't look at the person and talk about it at the same time.
• I think I am quite good at sensing people's emotions and I often know what is going on when two people misunderstand one another.
• It takes me a long time to recover from strong emotions, and they have a physical effect on me.

In summary, I definitely have empathy. In fact I feel like I sort of absorb the emotional atmosphere of a room or interaction as soon as I enter, or very shortly afterwards. It can be quite powerful: if there is tension or unpleasantness it makes me feel physically sick - for quite a time afterwards I often can't eat. If I come across somebody sad I want to help them.

But I thought people with autism aren't supposed to have empathy.

If I really care about
something I might look
like this, only less
glamorous.

I am now wondering if maybe it's that I don't have empathy quite like everyone else. Those inside things; the feeling sick, the hurting to help someone in tears, don't show. I don't always know what to do with them, so I don't do anything. Then people think I don't care. Maybe that's what they mean by people 'not having empathy': having so much empathy that you can't do anything with it. It's too much, so you freeze and it's impossible to do anything about it or show anything because if you do it will explode.

If I haven't waffled you to death with rambling yet, I have included below an account of the occasion that got me to thinking about this and the research theory I then came upon which made so much sense to me. Maybe they will help shed some light for somebody.

Finally, as this has been a post trying to collect a lot of partly-formed thoughts, it would really help me if readers ask any questions they have about any part of it: my experience, my thoughts, links to the research I found, basically anything I've missed out that would help to explain to somebody who doesn't have the same insides as me.

Probably more like this. I promise I care inside. So much it hurts.

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The particular incident that got me thinking this time came watching the film Ghost. Now, when watching or reading, let's say 'experiencing' something emotive I tend to go one way or the other. In public or a place where I'm not relaxed, I shut off that part of it entirely. I refuse to get involved. I think about other things when it gets dangerous and distract myself. It's safer not to go there.

But this particular day I was snuggled on the sofa with my husband, very safe and had been told the film was romantic. I was prepared for a bit of pulling at the heartstrings and some happy tears (I know I get far too involved if I don't choose to switch it off!). I ended up being completely drawn in and was (silently) sobbing my heart out by the end. It was just so sad. It's making me sad now, just thinking about it. And afterwards, I jumped up and took the dishes off to wash up and went to the toilet until I could talk without a quiver in my voice, hoping that Mr Peggy hadn't figured out what was going on.

I went back to sit with him, somewhat quieter than usual, but able to reply to him. I sat close - I needed touch to comfort me - but after a while I realised I wasn't looking at him. Slowly we started to talk about unrelated things, practical things or funny things and gradually it began to wear off. Later on I could look at him, then later still his face. It was only after a long time I could look into his eyes.

I've half noticed this effect before but never until after the event and I've never paid attention to it, but this time, I somehow registered the progression of what I could do. I'm not sure whether I completely did at the time or if it was afterwards, but it's since happened with another situation I was very upset about and I tracked it through the same stages.

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I did some reading about autism and emotion and empathy and things, because my experience didn't seem to add up with my idea of autistic people's emotional life. What I came across was the Intense World Theory. The name sounds a bit sci-fi and I don't know how widely accepted it is, but it made a whole lot of sense of my life. 

It sort of turns the traditional physiological explanations of autism on their head: instead of 'deficiencies' causing all the recognised difficulties, the theory proposes that parts of the brain are 'hyper-functional' (I think I might do a separate post on this!), and one thing this can lead to is 'hyper-emotionality.' 

Basically, this can be people experiencing so much of emotions that it's too much to deal with. Then we get the shutting-off, which looks to outsiders like we don't care. Or if we don't completely shut off, we have to reduce the stimuli - eg. looking at 'safe' things, not faces or eyes, which are much more intense and fill up my brain.

The theory doesn't explain all of my questions and thoughts, but it throws a whole lot of light on my experiences of life. I'll look at some other aspects next time.