“I am incredibly disciplined in the diagnostic classifications in my research, but in my private practice, I’ll call a kid a zebra if it will get him the educational services I think he needs.” – Judy Rapoport, a senior child psychiatrist at the National Institutes of Health, in Slate magazine.
I often think about the language of disability, from three sometimes conflicting perspectives – fictional depictions that are positive, political advocacy about disability and individual access to services. Fiction works best for me when the characters are real, and when their impairment or disability is only described (if at all) in relation to events in the plot. Political advocacy is mostly about raising awareness and gaining group recognition, with a strong focus on group identity. Access to individual services is often dependent on ticking the label that matches a box on a bureaucrat’s form or a piece of antiquated legislation (even if it says ‘Zebra’).
This is a brief post to note a collection of short reviews about non-fiction books about autism, relevant mostly to adolescents or adults who have a diagnosis. They include autobiography from Luke Jackson, Temple Grandin and Liane Holliday Willey; historical work from Uta Frith, Adam Feinstein and Steve Silberman; and practical intervention texts from Tony Attwood, Mohammed Ghaziuddin and Florica Stone.
This is an important book and, above all, a book of the now — some commentators have talked about the creation of a “pre-Neurotribes” and a “post-Neurotribes” public understanding of autism, which is probably correct. The amalgamation of Asperger syndrome into autism spectrum disorder within the DSM-5 in 2013 rewrote the definition of autism and Steve Silberman delineates the new landscape of the autistic spectrum and its population.
I have talked and written about ‘social calories’ to describe the impact that social interaction has on me, usually in terms of trying to limit my intake of social calories. This would often mean a choice between one activity with lots of gentle socialising or another with shorter, intense interaction. Too many social calories make me (physically) sick if I don’t pace myself. In short, Daisy wrote of one social occasion, “a surfeit of ‘social calories’ – the effort of making social contact with so many unfamiliar people in such a short time, and eating unfamiliar food, made me feel sick.”The Enchanted Doors, “A Book to Read When You Have Asperger Syndrome”. You can watch a presentation with visuals — about 13 minutes in, I talk about social calories and social misunderstandings in The Spooky Powers of Normal People).
As a child, I lived and went to early school in Pakistan, and then lived there again towards the end of secondary school, from 1978 to 1980. One part of the examination in ‘O’ Level English was to write an extended essay on a topic of your own choice. My choice was the painted lorries of Pakistan, a fantastic mixture of art, craft, technology, religion and emotional yearning.
I spent the summer of 2015 reading over thirty of the many, many fiction titles that relate, in some way, to autism. My personal reviews of individual titles will follow in a sorted gallery, where I can continually add and update the collection. Each review includes a link to a longer review in a newspaper or blog and a link to the author’s site, sorted by author surname. These are widely varied titles, from children’s to adults’ fiction, from romance to vampires, and from thrillers to science fiction. Most of these books state or strongly imply that a central character has an autism spectrum diagnosis, or it has been stated in publicity material or related films. The autistic character is not always the lead, and is not always painted positively – both negative and positive characters and events can be equally meaningful representations of most people’s real lives.