Theories and Practice in Autism
When I was asked to contribute a page on ‘The impact of cognitive models on autism understanding and practice’ for an undergraduate textbook on theories of autism, I spent almost my whole 400 words explaining why I think none of the established theories of autism have done much more good than harm in practice. I would have liked to say more about how I think autism theory can help in practice, because I really don’t think it’s time to give up on theories about autism yet, but I had to get that out of the way first.
If theory has been of limited use in practice so far, it may be because people have been trying to work with theories that only adequately describe limited components of autistic thinking, and tend to lead people wrong outside of those areas. Interestingly, autism researchers largely don’t seem to be relating their work back to theory at all — barely a quarter of papers in Nick Chown’s review even mention one.
The thing is that any attempt to understand minds or behaviours on more than an instinctive level involves theorising of some sort, and we all need all the help we can get to understand minds very different from our own — even understanding our own minds is hard enough!
When you find out that you or someone close to you has an unusual neurotype like autism, the normal response is to try to learn at least a bit about it. People want to understand themselves and those they care about or work with, and that is obviously very difficult when someone just doesn’t experience the world the way you do. What people learn is heavily informed by some dominant theories — however hazily understood and filtered through the media, specialists and others. Sometimes these theories help, but often they don’t. Too many autistic people are limited in what they can achieve because they, or those who care for them, have been taught there are things they just can’t do. One of the worst things that can happen to a person is when people give up trying to understand them, and end up just trying to manage them.
Psychological theories are of course not the only way to seek understanding. I’d encourage anybody interested to look up some autiebiographies, follow autistic writers, keep an eye on the #ActuallyAutistic hashtag on twitter. Meet more autistic people. Subjective experiences provide many valid and important insights, but the way we understand them is to relate them to things we think we already know.
For all of these reasons, autism theory is important.
The key question, I think, is this: if someone wants to understand, look after or just live around autistic people, what are the best starting points? It mostly boils down to just a few things. For me, the top things for you to know about my experience of the world are:
- Coping with multiple channels is hard
This can be sensory channels or other information streams. - Filtering is tricky and error-prone
Sometimes I can’t tune things out, other times I filter them out completely. - Changing tracks is destabilising
Task-switching is hard, and new plans take work. - I often experience things intensely
Usually things that relate to my concerns and interests. - I keep looping back to my interests and concerns
It’s hard to let things drop. - Other things that drop out of my awareness tend to stay dropped
I may need reminders.
Many things follow from those six starting points, all with practical consequences for working with people like me, and none of them is necessarily obvious from the outside. Many people will identify with them to some degree, but they are much more true for some people than others. You don’t have to understand how they all follow from monotropism to be able to work with them, but I like knowing how things tie together.
I believe that the traits I listed provide a good starting point if you want to make sense of autistic thinking, even if they don’t necessarily fit all of us all the time. They suggest ways of working with our strengths and around our weaknesses; and they might give some insight into when and why we sometimes struggle with seeing other people’s points of view, getting past details and getting things done. They also provide some pointers to help work out why autistic people are so often anxious and sleepless, and how to avoid it.
Tina Harris, who was later the Principal of a school for autistic kids, heard Wenn Lawson speak at a conference some 15 years ago. She says ‘it was illuminating, monotropism made so much sense! It was a real paradigm shift moment and I feel it really inspired my practice. I subsequently included polytropic and monotropic thinking and related implications for practice into staff training.’
People sometimes say all behaviour is communication, but that’s not quite right. Communication usually implies intent, and assuming behaviour is deliberate too often leads people to interpret it as manipulative. All behaviour is meaningful, though. Everything a person does tells you something about who they are and how they are, if you can work out how to interpret it. It’s also true that all behaviours can communicate, and there are many different ways and channels people use to get their ideas across. We need to understand what it means when someone does the things they do — to avoid misunderstandings, hurt feelings and frustrated needs. Part of that is about understanding expressions of emotion when somebody doesn’t use body language the same way as most of the population. Part of it is getting a handle on how someone experiences the world differently from you, and that’s where autism theory comes in.
If you start from a different theory about autism, you will be guided towards different starting points for understanding autistic people. If the first thing someone with authority thinks you should know about autistic people is that we are empathy-deficient/super-male, bad at seeing the big picture or basically bad at getting things done, that’s likely to frame how you see them from then on. I don’t mind so much if people think unpleasant things about me as long as they’re basically accurate, but even the best versions of these theories lead to wrong and harmful predictions too much of the time to be really helpful.
Not every approach does that: the ‘intense world’ and ‘enhanced perceptual functioning’ accounts are both plausible and constructive, though I suspect they put perceptual differences too much in the centre. Context-blindness or caetextia is one of the key features of monotropic thinking, but it’s more precise to say we contextualise differently — less broadly. The ‘predictive coding’ suggestion that autistic brains are basically very surprised is intriguing, and I wonder if it might prove surprisingly close to monotropism once you look at the dynamics of attention.
Whatever approach people take, the more they understand the root causes of our difficulties, the less mysterious they seem; the easier it is to predict when they will occur, and avoid triggers; the more they can empathise with us. It’s hard to fully see someone’s humanity if you just don’t understand their motivations. If autism theory can help people gain any insight into what goes on in our heads, it is worth investing some time and energy into getting it right.
With thanks to Sonny Hallett, Joan McDonald and Tina Harris.