31 March 2017 | by Sarah White
Please welcome Sarah White of the Institute of Cognitive Neuroscience, University College London, with this timely piece on autism awareness in advance of World Autism Day this Sunday, the 2nd of April.
Autism is a puzzle. It’s carried in the genes but we don’t know which genes. It affects molecules and cells in the brain but we don’t know how. And every person with autism seems different but they all have the same diagnosis. Is there anything common to all these individuals?
Take your mind back to the last time you were so shocked by something that you couldn’t stop thinking about it. Something that really got under your skin. Something that bothered you deeply. Maybe it was something that personally happened to you, but more likely it was something you saw in the news. Perhaps a particularly nasty burglary, a gruesome murder, a war crime, an abduction, or an act of terrorism.
There are many reasons why these sorts of events bother us so much, but a particularly poignant one is the element of unpredictability, of surprise. No-one is able to predict these things will happen until it is too late. We struggle to imagine what the perpetrators motivations and intentions were, what they might have been thinking. And we don’t know whether or when someone might commit these sorts of acts again.
Surprise can be deeply unsettling.
Now imagine having to cope with these emotions every day. Imagine that you have no idea what the people around you are about to do. And imagine that even after the fact, you still can’t understand why people behaved the way they did. All the time.
For most of us the daily act of working out why people act the way they do is spontaneous - we are able to think about what's going on inside their heads, their thoughts, desires, feelings, and intentions, and intuitively use this to predict what they're likely to do next. This seemingly inherent process has sometimes been termed 'mindreading'.
But one thing that does seem to draw autistic individuals together is their difficulty in 'mind-reading' – something which was first noted over 30 years ago. Without immediate access to the contents of other people’s minds, the world quickly becomes a surprising and deeply unsettling place.
It turns out that we are the ultimate source of unpredictability for the autistic individual.
And as the world appears seemingly more chaotic, consistency and routine and repetition become a friend. Order is reinstated and control is re-established. Worries begin to disappear.
By definition, autistic people display a range of restricted and repetitive patterns of behaviour, interests and activities. Indeed, a number of recently proposed computational and neuronal accounts of autistic mindreading difficulties describe these behaviours as coping strategies, as attempts to create a sense of control by imposing predictability on an unpredictable world (Pellicano & Burr, 2012; Lawson et al., 2014; Van de Cruys et al., 2014).
While these strategies go so far, they aren’t able to completely relieve the sense of anxiety that anything could happen at any point. Rates of clinical anxiety are elevated in autism (around 50%), higher in older individuals and those with greater cognitive abilities, and recent reports indicate that anxiety levels match levels of intolerance of uncertainty in autism (Boulter et al., 2014; Neil et al., 2016).
So, on World Autism Day, let’s take a moment to get into the mind of a person with autism. Let’s see what they see and feel what they feel. Let’s remember the emotions that accompany unwanted surprise. And if our behaviour brings surprise and with it turmoil to those with autism, let’s work to make the world a more certain, more predictable and more enjoyable place for autistic people to live.