When I first started to work with people on the autistic spectrum, I was given a very bad piece of advice: because the brains of people with autism were damaged, one should not listen to what they had to say. The implication was that they had nothing useful to contribute.
I repeat this now only because it highlights how completely our perspective on autism has been challenged and redirected by the autobiographical accounts of such courageous people as Temple Grandin, Donna Williams and many others, presenting us with the view from the inside.
Starting as a biologist, for a long time now I've been fascinated by the possibility of combining the insight people with autism have given us with the abundance of current research – and also what I have learned in 45 years of practice. This I have tried to do in a book I have written called The Anger Box.
With one in 100 children being born on the autistic spectrum, most people know someone, or know of someone who has contact with a child or adult on the spectrum. And yet when we meet them, society does not really understand how to connect with them. From our outside point of view they may appear awkward and unresponsive, as if they did not want to know us, absorbed in their own world and, occasionally having inexplicable, bizarre behavioural outbursts.
These are people like us. Some are extremely able but some have autism allied to severe learning disabilities. Contrary to the original idea that they are cold and aloof, some tell us they do love people, are lonely and long to fit in but cannot cope with the sensory overload. Living in a version of the sensory reality we share, their experience is of a runaway kaleidoscope where the pattern never settles. All are trying to make meaning, they are looking for coherence.
A good idea of the sensory battleground they inhabit can be gained by hearing this testimony from a woman with autism. In particular, she says her brain, "is like a dial-up modem, if you feed it too much data it will crash". And a child says the crash, "feels like having his head in a car-crusher".
The Anger Box explores how we can help the brain to work more effectively if we introduce an autism-favourable environment by reducing signals that increase sensory overload, and stepping up signals such as non-verbal use of body language to communicate and build up emotional engagement.
But it also investigates less well researched subjects such as, for example, Donna Williams' fascinating remark that when she wears tinted lenses she can actually hear better - and also possible links between self-injury and damage to cranial nerve five, the trigeminal nerve.
Because of the sensory difficulties that are at the centre of their lives, in the eyes of society children with autism are constantly 'getting things wrong'. The Anger Box explores the very real psychological pressures imposed on children with autism by the rejection they feel, either overt as from their peers but also by adults who do not understand their condition and see them as personally challenging.
Hope comes from understanding: researchers and practitioners need to listen to each other and especially to learn from what those on the spectrum have to tell us about their inner world and how we can bridge the gap between us.
