Friday, 23 March 2018

Living with Autism - a series of Twitter Threads

Over the last week, in preparation for the often well-meaning but sadly pretty misguided National Autism Week, I have written a series of threads on actual autistic experience and how to relate.  I have gathered these together on this blog post for ease of reference.

Monday 19th March – Eye Contact

Don’t make an autistic person look you in the eye.  Don’t expect them to do so.  Hell, if you’re dealing with someone who doesn’t look you in the eye, give them the benefit of the doubt.

Eye contact and its associated discomfort varies for all autistic people so this is a little generalised, but to try to help neuro-typical folk understand the deal here’s my take on it.
Looking directly at someone’s eyes feels a little like a combination of staring at the sun and accidentally catching the eye of a drunken maniac in a bar – a combination of pain and fear.

It hurts because we don’t want to do it, so it’s an effort of will to force ourselves.  The reason we don’t want to is because we don’t like how it makes us feel.  Part of me wonders whether I should even have to explain beyond that.

You see, it’s just the way we are.  It doesn’t hurt anybody.  It doesn’t cause any actual problems.  But I feel we’re not yet at the point, societally, to leave it at that so I’ll press on…

So, for me the ‘fear’ element of eye contact stems from several things, all of which swirl in my mind like a Beecham’s Powder every time it comes up.  First is a simple fear – are they ok with aye contact?

As I don’t like it, I wonder if they don’t too, so this puts me off, so I look away.

Second, is eye contact socially acceptable at this point? This you can learn over time but it still comes up, especially in transactions with cashiers etc. Bleurgh.

Third is related to second – how long should the contact be maintained? Frankly, I haven’t a clue.  Would quite like some kind of guidebook.

So there’s a terrible fear of screwing it up – eye contact where it’s not ok; staring for too long; averting gaze too fast.  None of the rules come naturally and getting them wrong can be mortifying – it’s grim.

And ultimately, beneath all of this is a simple fact – for whatever reason autistic people don’t seem to need eye contact during a conversation – it’s not required.  But we feel we should, because everyone else does.

So we’re left with a problem. We autistic folk are busting a gut to ‘fit in’ with this and many other things, all because we feel we have to. The alternative is not appropriate. And why?
Well, if I may, it’s because neuro-typical types, possibly like you, dear reader, still go all weird when we don’t look you in the eye.

You go all weird.  Not us. We’re trying really hard. Are you trying?

Tuesday 20th March – Empathy and Emotion

It is a commonly held view that autistic people can’t empathise, sympathise or show emotion.  Sometimes it is hypothesised that we can’t even feel emotion (!) As enduring as these views are, I’m afraid they are about as accuate as Accuweather…

Suggesting that autistic folk cannot feel emotion as ‘successfully’ of sympathise as ‘helpfully’ is one of many insidious ways that autism ends up being regarded as a terrible condition, one that you’d avoid using vaccinations against actual deadly diseases to prevent.

This attitude, that autism is something dreadful that ruins an individual is an unfortunate one, and something I’ll probably tweet about another time.  But back to empathy: the truth is that autistic people can empathise, just not in quite the same way.

I will, as always, use myself as a case-study so be aware I cannot speak for all autistic folk.

First, autistic people can definitely, obviously feel emotion.  We are not robots, nor are we sociopaths.  We get sad and happy and silly and all the rest.  But there is, I think, a fair point to be made.

For me, emotions are powerful and sometimes dominant, and I wear my heart firmly on my sleeve. In fact I would say that I have tremendous difficulty hiding my emotions, as we are apparently meant to be able to do.  I simply can’t.  If I’m sad, you’ll be able to tell.

However, I think it is more difficult for autistic people to identify the emotion they’re feeling – to pick it out of the chaos of our minds and hold it up to the light.  I’m always mightily impressed by neuro-typical folk who can identify exactly how they feel.  Crazy skills.

Similarly, we may not know what to do with the emotion.  I think this links to our lack of inherent social understanding – in what ways is it ok to show people you’re sad or furious? It’s hard to say, so we may come across a little…unusually.
But just because we express our happiness by shouting or anger by shaking doesn’t mean the emotion isn’t real, and certainly doesn’t mean the cause of the emotion is irrelevant.  That’s important.

As for empathy – we can identify whether you’re sad or angry or happy.  Of course we can, and I think this is true of many autistic people. I’m a slave to the general ambience of a room, hugely affected by the prevailing mood, so empathy isn’t a problem.

But I’m not sure I can pinpoint why you may be feeling the way you do.  I know I’m dreadful at this.  I’m chuffed you’re happy, but unless it’s painfully obvious, I won’t have a clue why.  So I might have to ask you.  Same if you’re sad.

I may also struggle to join you fully in your emotions, even if I recognise them.  For example, you may be sad but it could take me a while (or absolutely ages) to realise you need a hug.  Instead I’ll just sit there, feeling sad for you but not having a clue what to say.

So it may not be immediately obvious that an autistic person is empathetic or emotional, but that should not lead to a belief that these are things we can’t do.  But, and here’s the kicker…

It’s the case that empathy may not be forthcoming. We may be too stressed or tired, or we may genuinely struggle with it or showing it.  This does not mean we’re somehow broken.  Just different.

Wednesday 21st March – Sensory Overload

Sensory overload is an aspect of autism that is hard to explain, and by no means standard for all autistic people.  I have it, to an extent, so I’ll be leading with that, but some people have it to a far greater or lesser extent.  Buckle up, it’s thread time again.

Firstly, all five main senses can be overstimulated for autistic people, possibly all at the same time.  I’ll go through each of them in a moment.  As for ‘overload’, this is a discomfort that can be extreme in response to sensory stimulation.

So visual overload is being overwhelmed by the visual detail and colours and shapes around you.  In a busy space, like a city centre, the sheer quantity of things jostling for visual attention can be painful to experience, leading to panic, anxiety, migraine or meltdown.

The details of every word, letter, image or colour of a scene can be too much, as it seems the brain struggles to blur out the unimportant details.  It’s a bit like a computer game that can’t mipmap (a process that dulls graphical details at a distance.)

The brain is simultaneously interested and focused on all the details at once, which frankly is a little too much to bear. Imagine what a super-busy classroom with ever changing complex displays must be like…

Audio overload is similar – no noise is filtered out. When stressed I find it impossible to ignore sounds, no matter how inconsequential. If they build up, layer on layer, it can become distracting, horrible, painful, terrifying. Chattering classrooms are a grim example.

I think it’s fair to say audio overload can knobble just about anyone who is autistic, no matter how well they can camouflage or mask it.  I have a hunch that fairgrounds, clubs and such aren’t popular places…

Olfactory overload is something I suffer from.  In fact, I have found I spend at least half the time with my nose closed at the back (if you see what I mean – where it meets my throat) just to avoid potential smells that could throw me.

Strong perfumes, air fresheners, bad smells, petrol, whatever – they can distract to an enormous degree and even cause misery if for whatever reason the smell is disliked.  I don’t know whether smells are stronger for autistic people, but they’re definitely more distracting.

Gustatory overload (taste) is not something I experience, which is great as it means I can eat with impunity, but I know it can cause some autistic people to have very limited repertoires of food, often mistaken for fussiness or faddiness, because some tastes are dreadful.

Tactile overload can be very common, and is usually to do with temperature and clothing.  It is very common indeed for an autistic person to have significant problems with heat, with only a narrow range of temperatures felt as okay.
I can’t stand temperatures over 22⁰C, for example.  Makes holidays a bit risky.

The texture of some textiles can be off-putting and again cause severe reactions, especially in younger children.  Denim, rough cotton, linen and wool can be anathema, causing extreme discomfort and distraction.  This can lead to extremely small wardrobes of trusted clothes.

But these clothes will be loved for their softness and lack of general offensiveness, so be patientand gentle when they need throwing out after long service!

These overloads will come and go, be consistent or erratic, and cause different amounts of consternation.  But they are very real and can be very disturbing and miserable.  Schools could help a lot with this.

From reducing the amount of visual ‘noise’ on the walls (laminated posters!!!) to allowing autistic students to wear more comfortable clothing, adjustments can be made where necessary, and should be made when necessary.

Thursday 22nd March – Interests and Obsessions

One thing that is often given a negative spin in descriptions of autism is the special interests or obsessions that autistic people usually have, with them being seen as more a curse than a blessing.

Special interests (henceforth simply interests) are frequently seen as a distraction, something alien and odd that is a curiosity at best, or a pathology at worst.  Indeed, the strength of an autistic person’s interests can vary hugely, but there is much that is positive.

These interests are usually defined as being unusually intense, based on ‘unusual’ topics or displayed in unusual ways.  And yes, there are autistic people who collect drawing pins or car registrations.

What isn’t appreciated is just how integral these interests are to an autistic person, and how fundamentally they keep us grounded, happy and calm.

They act as a life line, a refuge, a safe space or sanctuary where we can retreat when things get too much, or when we are exhausted or stressed.  Indulging in our interests gives us time to breathe.

And they’re really cool! I love my interests, and I never tire of them, which is great considering how much I rely on them to keep me feeling OK.

It is true that autistic people tend to be able to maintain focus and fascination in their interests more than what would be deemed ‘normal’.  It can seem tireless, with an autistic person devouring every morsel of information about a topic.
We can very quickly become experts in our interests, because we never get bored of exploring them.  I know more about the Titanic, volcanoes, the First World War, Pokemon, Lego and Harry Potter than I’m ready to admit, because they interest and calm me simultaneously.

If I’m bored, or stressed, or freaking out I can retreat back into my head and think about these things, and this helps so much.  I may construct a mental image of the Titanic or something, all to keep me on the level.

I don’t think this is a bad thing.

We also really want to share our interests with you. So, so much. Oh, and how infrequently you’re interested! This makes sense, as us autistic folk’s interest levels are a bit intense! But still, God we’d love to talk with you more about them.

Autistic children sadly tend to learn early on that no one shares their level of enthusiasm for, say, Sonic the Hedgehog. And so it’s internalised, kept to ourselves.  I’m not sure this does harm, but I do wonder if our social miscues would improve if it weren’t the case.

So if you deal with autistic children, please listen to them when they talk about their interests. It will make their day.  Ask them questions.  Care.

And remember that there is no harm to these deep obsessions and interests, and it’s a pretty safe bet that some of the world’s greatest achievements stem from an autistic person’s indefatigable interest in a topic.

You think Darwin’s minute obsession with the details of his theory was a fluke? That Newton’s intense curiosity in physics was ordinary? I reckon some of them were autistic, don’t you?

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  1. Wow I always thought of empathy as something I feel. But for others its only real when shown and I dont always do that. Thanks for the enlightenment

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  3. This is very useful. My partner is autistic and I recognise some of these traits but had no idea how he experienced them. I'm trying to learn more about autism so I can be a better partner to him. Thank you for these insights. They really will make a difference for me.

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