The tangle of everyday communication from an autistic viewpoint.
If you’ve ever read any of the academic or medical literature about autism, you’ll have read that autistic people have various problems with communication. You'll think much of it stems from a lack of empathy and an inability to recognise emotional cues from other people. They hear your words but don’t get your meaning. Their lack of emotional sophistication is betrayed by their very literal manner of speaking and their propensity to be very truthful. Many of them don’t like eye-contact either, which may be part of why they don’t recognise other people’s emotions that well. They must be handled carefully because many are prone to violent, unprovoked “meltdowns” or sometimes even more distressing shutdowns where they completely disengage.
You’ll believe that because it’s what you see written almost every time autism is mentioned in the press. There are companies that make a fortune “treating” autistic people, offering “cures” and “improved outcomes”, who fill their brochures and websites with this peer-reviewed science. Policy makers and charities recycle it too. It’s what the “experts” say so it must be true, mustn’t it?
I’m here to ask you to sweep that “knowledge” out of your brain and start afresh with a new perspective. The failure of the majority of published work on autistic people, at least the academic work from which most mainstream items are derived, is that it’s written by non-autistic scientists (and many charlatans) studying and making conclusions about autistic people in the same way they would animals in a zoo. Much of the work to date has been conducted on insular communities of children separated from their parents, and a surprisingly high amount of it on mice. You read that right – they make conclusions about sophisticated human interactions and decision making by watching mice. Lots and lots of mice.
Comparatively little research has been conducted to date with (human) adults, and few questions have been asked of those, often very intelligent people, about how they might interpret their differences to the accepted norm. There seems to be a predetermined verdict that autism stems from deficit, from absence of senses or skills and that it requires amendment or augmentation, so the majority of the funding goes to studies which seek to confirm this.
That’s starting to change as a generation who grew up with their autism, even if they weren’t diagnosed until adulthood, are amongst the researchers, doctors and writers investigating and documenting their lives and experiences. New theories and ways of thinking are starting to come to light which challenge the orthodoxy. A revolution in understanding of autism and neurodivergence is under way.
I want to address one particular aspect of the commonly held ideas about autism because it is one that leads to no end of frustration, both from neurotypical people having difficulties communicating with the autistics in their lives, and from autistic people battling against stereotypes that hold them back in employment, education, relationships – in life in general. It is probably at the core of many autistic experiences. Why do I do this? Because I am one of those autistic people who’s life has been obstructed, set back and on more than one occasion, virtually destroyed by these very assumptions. I won’t be referring to autistic people as “Them” for the rest of this article because it really should be “Us” & “We”.
I often see posts from neurotypical people on autism groups online asking “Why is my autistic son so quiet when I talk to him, why doesn’t he reply to me?” or “This autistic girl I like always seems really distant when I try to get to know her better”. Each post ends with the inevitable “How do I get around this?”. The answer is often not well received. There is no magic bullet to fix your communication problem, no Rosetta Stone that will crack the code of autistic language. The solution is to fundamentally question the way you communicate and ensure you’re transmitting the right message if you want a favourable response, or even a response at all in some cases.
The idea that we don’t pick up on emotional signals, that we are emotionally illiterate in some degree, has persisted for decades and has earned scientists millions of research dollars in the process. Had they asked us rather than examining us they may have realised that for a large proportion of us they were looking in the wrong direction. They have been so focused on a deficit, a lack of comprehension or of sensory ability that they have overlooked an answer that was staring them in the face all along. It is not a lack of information or understanding that freezes us or causes us to be unwilling or slow to reply to people. It’s not an irrational fear or weird predilection that makes eye-contact difficult. It isn’t a lack of self control or inhibition that causes us to melt down in spectacular displays.
It’s a deluge of information that would challenge anyone to sort, categorise and process. Like a room sized computer in a sixties sci-fi movie, we process as much information as we can until eventually there is a pop and a fizz and a stream of ticker tape pours out covered in the words “does not compute”.
When it looks like we are frozen in our tracks by the morsel of information you have offered to us, we may in fact be drowning in a vat of emotional spaghetti, looking for a gap in the strands of unconscious information you have transmitted to us without even knowing it. What seems to you like a splash of emotion is like a tidal wave to the autistic recipient. It’s not emotional insensitivity we display – it’s an understandable reaction to emotional waterboarding, and we live with this every day of our lives.
You’ve probably heard the suggestion that to bond with a dog you must not show fear – they can “smell fear” as the saying goes. They sense things that humans generally don’t and react accordingly. Is it that difficult to believe that some people have similar senses? We are a species of infinite variety after all. We all hear tales of people who are remarkably social – the “life and soul of the party” as we call them. It’s said that they can “read a room” and adjust their social approach accordingly. We look upon such people with respect, even envy them despite the fact that some of them could well be psychopaths. They make us feel good about ourselves and make us joyful, so we like them, whatever their motivations or hidden agendas. Clearly they sense some hidden information about the emotional temperature of a gathering and have devised ways of using it to their advantage. Take that a step further and you meet someone who doesn’t just perceive a little more than other people, but who perceives so much it’s nigh on impossible to sort the emotional wheat from the chaff.
For the sake of illustration, let’s say that the average neurotypical person consciously transmits around ten pieces of information when they speak, between word choice, tone & inflection of voice, facial expression and gesture. The skilled “people person” may be aware of twice as much information as the other wishes to display. Their awareness of subtle vocal changes or micro-expressions may make it easier for them to get a handle on their mark. They will have twenty data points on which to base their reaction so have an advantage. They’ll be far more likely to spot the lie that would fool the unwary.
Now imagine that when someone speaks to you you don’t receive ten or twenty data points on which to understand them, you receive a thousand. A thousand tiny sensory impressions all flooding into your consciousness where normally you would only be aware of and have to cope with ten or twenty. We all know the signals are there, but whether we are unaware of them or have learned to filter them out is unknown. They are the signals that skilled actors have learned to emulate unconsciously, to perform their most convincing characters. They are the signals that self-help books and life-coaches try to teach to make people more successful in business, entertainment or romance. They are the miniscule subtleties currently being learned by artificial intelligences to identify the truth and to manipulate our buying choices in the future.
If we had the internal processing power of those future AIs we autistics might be able to make use of this extra data to make us formidable in the social world. We might be giants in whatever field we chose, able to predict and react to everyone in the perfect way to manipulate their choices without their knowledge, and be thanked for it. We are not supercomputers though. We are human. The information flood is unfiltered and we must sort it, categorise and prioritise it before we can choose how to or even if to react.
Imagine being at the centre of all that information without a clear map to guide you to what’s important.
Maybe it’s the words? The tone of voice? That slight hesitation? The incongruity between facial expression and words? Does that tiny twitch in their cheek muscle mean anything? The barely noticeable smell in the air – is it sweat, pheromones or something else? What about the time they lied to you last week? Or last year? But they told the truth and were kind to you yesterday? Can they be trusted?
If you were inundated with so much information you might take a long time to answer someone. You would want to make sure you responded appropriately, but without the guidebook to filter out what is and isn’t relevant you’d be lost. You may choose just to say nothing at all. After all – when people transmit so much information without realising, you may be reticent about baring yourself in the same manner. You may even try to be kind by not submitting other people to the same torturous confusion you are suffering. What is the point of verbal communication of all it does is cause pain and uncertainty. Maybe NOT talking is the best option? Perhaps words are better written down, devoid of all the trappings of face to face communication? Maybe sign language? Perhaps just avoiding the pain altogether is the only way to cope and survive?
If you DO choose to join in and speak of course, it might take you a little longer than others. You may grow up being nervous of initiating conversation because of the onslaught it triggers. You might take longer to answer people than they expect, and your words and gestures be very carefully chosen to convey exactly what you mean. You’re so used to people giving you conflicting signals you want to make sure you are understood precisely. You choose to be brief, honest and literal. You want to keep the info-dump the reply will unleash as brief as possible.
Maybe you’ll take measures to reduce the amount of data you have to cope with. You can’t shut your ears or turn off your nose, but you can look away. So much information is fired at you by people’s eyes – maybe not looking at them will give you a little more space to think? You know people like eye contact, but given the choice of not meeting their gaze and not communicating at all, you might choose to sacrifice a little good will for the sake of not being ostracised.
No plan is foolproof though. Some people just won’t be willing to give you the space to communicate in a way which allows you to function whilst keeping your sanity. It’s their way or no way at all. They demand eye contact, they raise their voices, they make accusations and say cruel things. You might start fidgeting to focus your mind away from the torrent of information and impossible demands, but that just makes them worse. They start criticising your fidgeting too. On and on it goes until eventually something in your overloaded brain goes bang!
You shout and roar as loud as you can, formless meaningless screams of pain and sadness. You lash out to push your tormentor away and put an end to the suffering. You punch your head to drive the pain away, tears pouring down your cheeks as you bruise yourself and pull out clumps of hair…meltdown.
Or you might just close down completely. You can’t fight, you can’t flee, so your brain takes the third option. It opts out. Your face drops, your muscles go slack and you become a blank canvas. No reaction, no fight, no movement. You’re still conscious, but your mind has said bye-bye temporarily. There’s still a part of you hidden somewhere in the dark depths of your brain, but it’s cowering like a frightened child hiding under the bed from the monsters outside...shutdown.
It doesn’t have to be this way. As I’ve grown older I’ve become more competent at filtering out the information I don’t need or complicates things – that which confuses me. People rarely mean exactly the words they say and there is so much conflicting information in everyday communication, but I’ve learned to whittle it down from the thousands of data points the child in me had to process, to a few hundred. It’s still too much, but I can cope much better now than I ever did.
No decent human being would want to put someone else through the torture I described above though, would they? Would you keep badgering someone, demanding to be spoken to they way you were used to if you knew that you were inflicting real, tangible pain with every word and gesture?I would like to think that you would not, dear reader. I’d like to think that if you have read this far you want to be a better person than that. I’d hope you to be a kind soul who wants to do more to understand and learn how you can meet us halfway so we can speak on an equal footing.
Come back soon for part two of this article when I’ll talk about exactly that.