[Edit: at the time when I wrote this post, I mistakenly thought of myself as an extrovert. I was incorrect in this assessment of myself – as I explain here. This is a big, long, journey of self-discovery, readers! However, in all other respects, the words I present below are as true as they ever were, and just as heartfelt.
Apologies, folks – this is a looooong one…]
I hadn’t intended to address The Empathy Question just yet. Since my formal diagnosis, I have shared my blog more widely with people I know, and in particular many of my non-autistic friends. I’d like to educate, inform, (hopefully) entertain a little, and basically not get too political for the time being. It was my intention to pootle along, writing whimsically about my love of green spaces, my fascination at the structure of leaves and flowers, the way the sky sparkles for me and whatnot, interspersing this perhaps with the odd discussion of social interaction faux pas.
But The Empathy Question has been bothering me, and it’s an itch I must therefore scratch.
One of the things that increasingly frustrates me about media explanations of autism is the tendency to describe the condition purely in terms of visible behaviour, and nothing more. Time and time again, it’s presented to the world as merely a collection of repeated movements and actions, restricted thoughts, difficulties with communication and social interaction, and so on.
Yes, these are characteristic behaviours exhibited by autistic people, but this representation ignores what’s ‘under the bonnet’. It fails to even consider what might actually be going on internally; furthermore, it leads to the somewhat offensive suggestion that autistic people don’t even have any inner life; that all that there is to an autistic person is what you see in front of you. And yet these traits are merely the external manifestations of something else, which is at the absolute heart of what makes an autistic person autistic. It’s a common misconception that autistic people lack empathy, and also that we are emotionless and empty. This is simply Not. True.
Here’s a very pertinent tweet I came across recently:
But first, for me, it comes down to information.
When I say ‘information’, I mean this quite literally in any form. Sensory information – sight, sound, smell, taste, touch, proprioception, vestibular, internal bodily sensations. Communication – be that visual, written, spoken, non-verbal, online, paper-based, social, formal, or whatever. One’s own thoughts are information (and by golly gosh, if you’re autistic, you have an awful lot of thoughts). And, of course, there’s emotional information.
You see, autistic people perceive and process information differently from neurotypical folks. We don’t ‘filter’ it in the same way. We can be more or less sensitive to different types of information than neurotypical people, depending on the type of information, environment, personal circumstances, our aspects of our personality, character and being, and a whole load of other factors. And that affects the way we empathise. But first, about that thing called ‘information overload’…
Too much information?
Autism is often described primarily as a ‘social communication disorder’. I prefer to think of it as an variation in information processing. That variation is what causes the social communication issues.
The vlogger Tom Bowes (Autistic Genius) often seems to prefer the term information overload to ‘sensory overload’, and I agree with him. Sensory information is, for me, only one of the many different categories of possible information that might potentially overload and overwhelm me.
I find myself behaving more ‘autistically’ these days. Part of that is down to embracing a truer, more authentic picture of who I am, through self-realisation, self-identification, and now, a formal autism diagnosis. I’d been hiding many of my behaviours for years because I didn’t realise quite how fundamental they were to who I am. But part of acting more autistic is simply down to an increase in the information I have to deal with every day.
There are times when I love the way I experience information. I find fascination in detail. I am able to make connections all over the place, linking apparently unrelated pieces of information together in complex networks and patterns. Flowers glow like candles against a backdrop of greenery. The sky really does sparkle on sunny days. I experience intense sensory pleasure when enjoying a good meal, or lingering over a decent glass of wine. Music, or a particularly powerful piece of writing, can move me to tears.
But like many autistic people, I am perpetually on the verge of being overloaded. This is even more the case these days – I have more to think about, more decisions to make, more to worry about, and far less mental and emotional downtime than I did in my teens and 20s. A lot of the everyday stimuli that never used to bother me are now, at times, difficult to handle. Even an extrovert like me can get tired out if she’s an autistic extrovert. I have exceedingly limited opportunity to recharge my batteries, to replenish my spoon supply.
And when I’m overloaded (well, not just when I’m overloaded, but it’s especially important at those times), I need to stim.
Stimulate. Regulate. Meditate.
For me, stimming tends to a number of different purposes.
Firstly, to address my pent-up ADHD-ish need for constant movement. I need to fidget. I need to wiggle my fingers, fiddle with a Tangle, or play with my hair. It’s essential. The coiled-up spring cliché.
Secondly, at times when I need some form of physical feedback. I’m highly sensitive to sounds, touch, smells, internal bodily sensations and (at certain times) light. My proprioceptive and vestibular awareness, however, are more limited. I struggle to ‘feel my body in space’. I’m also clumsy and have issues with balance (possible overlap with dyspraxia here!). These things (along with executive functioning issues and problems with distraction) are probably another reason why I don’t listen to music when exercising – I need to plough all my energies of focus into awareness of what my limbs, and the rest of my body, are doing. Any other information, including music, is overly distracting. It also means I quite like exercising when my muscles are pre-fatigued – there’s more resistance, and therefore more feedback.
Stimming – especially movements like twirling, swaying or arm-waving – is another way of getting that feedback. Many autistic people find the types of stimming that aid proprioception are particularly helpful in times of acute stress or meltdown. And yes, at times these might be self-injurious (though in my case less so now than, for example, during my teens – although I still have a tendency to want to punch my fists into things, or at least shake them vigorously, if shit gets really bad.).
Thirdly, for self-expression. I like to dance, hum, and sing. Other people flap their hands. But there are many ways to express yourself ‘in the moment’.
And finally, to provide a focus – a grounding, or anchor – to aid me in drawing my attention away from all the other information that happens to be overwhelming me. An autistic form of mindfulness practice, you could say. Sometimes it’ll be a visual thing – a ‘sensory boost‘ gained from closely examining a flower or leaf, or being mesmerised by the ripples in a lake. At other times, it’s those small, fidgety movements again, movements that are usually repetitive. There’s comfort and solace to be gained from repetition. It’s controllable; it’s predictable. Another thing I also find myself doing is counting repeatedly to 20, and interestingly, counting breaths, I have learned, can itself be a form of mindfulness meditation.
And I’m not alone in needing to do these things.
Same old same old
And so we come to routine. Movements and actions aren’t the only thing that might seem, to a non-autistic person, overly repetitive or ‘rigid’.
When I was reflecting on this aspect of autism prior to referral for assessment, this was something that I didn’t feel strongly applied to me. I don’t wear the exact same outfit every day, or always eat the same things. My working days are never uniform. But then I thought a little more about this.
When I was a young, social animal, I never, ever failed to remove all my makeup, or go through my entire step-by-step skincare routine after a night out. No. Matter. How. Drunk. I might have barely been able to stand up, but I still felt stressed at those times when I wasn’t able to get my face fully clean using my specific routine. It helped me feel that, no matter how chaotic my situation at the time, all was right in the world if I looked after my skin.
These days it’s the same with cleaning my teeth. I find my dental hygiene routine – brushing, flossing, mouthwash – incredibly tedious. But no matter how tired I am, how late it is, or how little time I have in the morning because the kids are clamouring for attention and I need to get myself out of the door and off to work, I can’t not perform the ritual in its entirety.
My daughter has a bedtime routine, but I tend to be the one who gets stressed out when it’s disrupted. There’s comfort in the controllable, the predictable.
I find summer vacations at work stressful – when there isn’t a regular pattern of teaching preparation and delivery, assessment, and meetings with academic colleagues, there’s often still loads of work to do. But the lack of structure in my calendar leaves me struggling to prioritise my tasks and plan my time. There are too many decisions to be made.
But perhaps the biggest problem for me is dealing with anything that is unplanned or unexpected. I might not need the same routine every day of my life, but I still need to be prepared.
Too much information – information overload – can drastically affect an autistic person’s already-shaky executive functioning abilities. If my schedule is disrupted, this means making new decisions. And in my case, this means mentally playing through all the information associated with each alternative choice in the decision-making process. It can be exhausting, and often I feel paralysed, and I shut down. I withdraw. I stare blankly at my computer monitor, or off into space. If the disruption is exceptionally sudden, I have a meltdown. These are the times when I value the support I get from my colleagues at work, or my husband at home. There’s no shame in asking for help – something I’m still having to learn.
Routine and structure are important. They help us maintain control over the inflow of information. Because there’s so damned much of it.
Social communication ‘fails’, as told by an autistic extrovert
I’ve already explained in a previous post that I see myself as an ‘autistic extrovert’. Autistics, just like people of any other neurological profile, come in all shapes, sizes, flavours, and personality types. One of the things that makes my autism ‘atypical’, at least according to my clinical psychologist (CP), is the fact that I’ve never really been short of friends, or experienced the same levels of social isolation that affect many autistics.
However, being around people lots, and engaging in the copious social interactions that this entails, has its own problems even for an extrovert, when that extrovert struggles to read all but the most glaringly obvious facial expressions, engage with the norms of two-way verbal communication, or properly discern communication signals from all the other pieces of information that are coming at her. There’s only so much I can take in at once, and the stuff that’s more difficult, no matter how important, tends to get filtered out. My brain is undertaking a little exercise in self-preservation.
I’ve made myself vulnerable by higher-than levels of social exposure (another fact noted in my diagnosis report). I’ve got myself into a lot of scrapes. I’ve bored people to tears, repeated myself excessively, misinterpreted signals and misunderstood the intentions of others. I’ve been unable to process correctly the information coming to me from the people I interact with. At other times, I’m simply overwhelmed and overloaded by the quickfire nature of the interaction and sheer volume of communication information. I get flustered if the conversation is taking an unexpected turn (this means quick decision-making again, folks. And, as we’ve seen above, that causes problems!). It’s led to serious emotional abuse, gaslighting, being taken advantage of, being misinterpreted myself, or at the more mundane end, simply making a fool of myself.
Because of these difficulties, I need to be in control of a conversation. It’s often the reason why, in group work situations at work or in studies, I take on the role of discussion leader. I can steer the conversation in a direction I’m comfortable with. I can limit the number of tangents people take. And it’s easier to assert my own views if I can control the extent to which others butt in or take over. And if I believe I’m right about something, that’s important!
All of this means I can come across at times as bossy or opinionated. I have a tendency to take over. And sometimes it means others in the group then place more responsibility on me – to report back on a group discussion to an entire room of people at a conference, to write up or feed back outcomes more formally. And I’m damned good at communication a lot of the time because I’ve practised so much, but after a while of playing the role of capable, confident, articulate communicator, it all gets a little tiring.
And when I’m tired, I tend to get emotional.
Overwhelmed by emotional information
So yeah, this post was supposed to be all about empathy. But somehow I’ve ended up writing about all sorts of other things. I’ve changed the title and URL three times already. But I suppose we’d better get back to our original topic.
Yesterday, I received the written report of my assessment through the post, confirming my official diagnosis (about two weeks earlier than expected – not only is my CP awesome for being reassuring and compassionate, yet thorough and objective; they’re efficient too). One of the things the report notes is my experiences of ‘hyper-empathy’. There are times when I feel empathy way more keenly than some people.
I’ll level with you. I’m not liking 2016 too much.
Yeah, personally, things are pretty good. I have a lovely husband, wonderful children, amazing friends and family, and a job that – whilst it comes with plenty of potential for overload and burnout – allows me to work on things I love and find interesting, alongside colleagues who are supportive, accepting, and understanding. I now have a formal autism diagnosis and people tell me I’m now more relaxed as a result. And it looks as though my daughter will be assessed fairly soon. Our life is going well.
But the rest of the world? There’s too much death, destruction, and despair. What the hell is with all the hatred, murder, prejudice, and abuse? Can’t we all just get along?
I limit the volume of news and current affairs items I watch and read. I just can’t take the pain and suffering that I imagine others to be experiencing. I am repeatedly ‘putting myself in others’ places’, and this makes me anxious, and keeps me awake at night. As a child, I used to cry myself to sleep thinking about the suffering I’d witnessed from a character in a film or TV programme.
Sometimes, autistic people’s reactions to an emotional event, or the experiences of other people, can seem ‘inappropriate’. We might shut down and become unresponsive; we might bark or snap at the person asking for help; we might try and turn the attention back towards ourselves; we might physically lash out. Some of us do not use the ‘default’ communications methods used by the majority, and that can make it event harder to express ourselves. Others – like me – can usually communicate pretty well, but this ability often falls short at times of stress.
And usually, this comes to Too Much Information. Emotional information is complex, fuzzy, ill-defined; it can seem bewildering and illogical – not because we don’t feel emotions, but often because we feel too much.
We often have a strong sense of justice and fairness. We like to help others. We often want to make the world a better place. We are often compassionate, kind, and caring.
You see, we can, and frequently do, feel empathy. But the way we express it, or deal with it, is influenced by the substantial differences, from non-austistic people, in how we process information.
This is why I’m glad that the UK National Autistic Society is currently running its ‘Too Much Information‘ campaign.
If you still find any of this difficult to understand or accept, just talk to us. Or – more importantly – listen to us, using whatever means or methods we need to communicate with you.
We have plenty to say. And we’re happy to tell you about it.