For 20 years I’ve provided ‘respite care’ for Eddie, now 25 years old. Eddie lives with his mother, has been a devotee of horror films since the age of 2, is exceptionally sweet-natured, happy, sociable, optimistic, funny, resilient and generally a complete treat. He has Williams Syndrome (www.williams-syndrome.org.uk) which is characterised by these qualities – the horror thing is an optional extra. WS also results in learning disability or ‘mental handicap’.
In some ways WS is the opposite of autism, at least in respect of pleasure of being with other people. As a young child Eddie would always seek out new people to get to know - my brother told me how when Daniel took him to a football match, Eddie spent most of the time on the lap of the man sitting next to them. Tube journeys were enlivened by Eddie chatting to whoever was sitting next to him and when friends of mine who Eddie had never met before came over, at the end of the evening Eddie would cling to them, tell them how much he loved them and that he would miss them every day til he saw them again.
I’ve recently started to provide respite care for another child with WS. Unusually for someone with WS, Matthew (6) is also autistic, but fortunately his autism is tempered by his WS and he is only moderately disinterested in other people.
Anyway, getting to know Matthew has given me an interest in autism and I’ve read two superb books about autistic kids: George and Sam by Charlotte Moore and Joe by Michael Blastland. Both authors are parents of the autistic kids in the books’ titles. The books exquisitely describe the kids’ individuality and how different their perception of and interaction with the world is to ‘neurotypical’ people. Much of the books is given to explaining (and to some extent guessing) the meaning of the kids’ unconventional communication. An astounding book about autism was written by a teenager with Aspergers Syndrome, Luke Jackson – Freaks, Geeks and Asperger Syndrome: A User Guide to Adolescence
There’s an incredible video on youtube which shows how one woman with autism communicates. A series of actions which could be regarded as ‘meaningless’, ‘empty’, ‘unsociable’ are then ‘translated’. The video compellingly demonstrates how purposeful and functional these communications are and is challenging and, for me, transformative in understanding what makes not just people with autism but all of us tick. I found that I kept having to look at the title of the video, In My Language, to remind myself that these unusual actions are indeed a legitimate language, albeit one that we have to work quite hard to decode and appreciate. http://www.youtube.com/watch?v=JnylM1hI2jc
In researching media issues for people with learning disabilities, I learnt that there are particularly tough aspects of TV and film (and especially DVDs and videos) for people with autism and the people who live with them. This is partly because of autistic people’s sensory sensitivities but mainly because of their love of familiarity and routine. And what Luke Jackson describes as his ’special interest’, or what families often refer to as obsessions. This commonly mainfests itself in a magnetic attachment to one film, or even a few seconds of one film. The same few seconds of Thomas the Tank Engine played over and over and over for hours, days and years on end can clearly be very wearing for others in the house. Here’s the link to the article on TV and films in the lives of people with autism:
http://www.ldmedia.org.uk/reports/autismtv.pdf
