My first, and totally eye-opening experience was when we were investigating the use of the gluten and casein-free diet for autistic spectrum disorders and I read ‘Freaks, Geeks and Asperger Syndrome – a user guide to adolescence’ by Luke Jackson. Luke came in the middle of family of six, all of whom were on the autistic spectrum ranging from Matthew, the eldest boy who was dyslexic and dyspraxic down to Ben the youngest, who was profoundly autistic. Luke had Aspergers but was, when the book was written in 2002, an extraordinarily articulate and perceptive 13-year old.
He wrote with humour and understanding – not of his world – that was totally clear and logical to him – but about us ‘normal’ peoples’ struggle to understand how autistic people worked. And suddenly I realised how totally illogical our ‘normal’ approach to life actually is when compared with the autistic one. For anyone interested I would certainly recommend you read either Freaks, Geeks or Luke’s earlier book, A User Guide other GF/CF diet.
Andrew Edwards’ book is, if anything, even more revealing as Andrew does not have Aspergers but is fully autistic. Indeed, when he was diagnosed aged four the consultant suggested that he would spend his life in an institution. But Andrew does not live in an institution. Indeed, 27 years later he lives at home, has a wide range of friends, has written this book, held down job at MUTV for over a decade, spoken regularly in public about his condition and received numerous volunteer awards.
Not that any of it has been easy. And what is so fantastic about his book is that you do not just come to appreciate the extraordinary energy, determination and devotion of Andrew’s family in supporting him, but to realise exactly why it is so difficult for him to deal with so many of the situations that the rest of us would sail through without thinking.
For a start, we simply do not ‘get’ how seriously scary our world is to an autistic person who just does not understand, so much of the time, what we are doing or saying – or why we are doing or saying it. Many therefore retire into themselves entirely. But those who, like Andrew, do make the effort to reach out struggle to get their heads around the nuances of our ‘normal’ conversation. As a result they often make what we see as inappropriate remarks and give offence when none was intended – or get upset by remarks that were not intended to give offence, and are then unable to control their behaviour – thus giving yet further offence.
The natural follow on is that they are seen as ‘weird’ by their peers and find it very hard to make friends. In the worst case scenario, they are mercilessly bullied – as happened to Andrew at more than one of the many schools that he attended. (An interesting insight into autistic thinking was that, no matter how badly Andrew was bullied, for years he would prefer the misery of being bullied to the disruption of his vital daily routine that not going to school would involve.)
But despite the ups and downs, and supported by his extraordinarily determined and devoted single mum, and sister Mel who has now become his support worker, Andrew has achieved an amazing amount. And without a doubt, writing this fascinating and revealing book ranks high in his list of achievements.
Absolutely a ‘must read’ for anyone who who lives or works with an autistic person – or for anyone interested not just in autism, but in the complexities of human communication.
You can buy I’ve got a stat for you – My life with autism by Andrew Edwards here as a paperback for £9.99 or as a Kindle for £6.99