Thought-provoking article “Reaching My Autistic Son Through Disney” http://www.nytimes.com/2014/03/09/magazine/reaching-my-autistic-son-through-disney.html raises lots of questions. Read it first, then see how my reaction compares to yours.
Written by a journalist, it is a coherent story and uses terms and concepts familiar in the discourse about autism. What interests me about this article is the language and two concepts in particular.
The first is of the disappearing child, or the unreachable child somewhere inside. It’s a common metaphor in autism stories and like all metaphor tends to turn off the intellect and engage the emotions. It also provides a framework to understand the plot and the relative roles of each character.
The second is of the moments when these children suddenly say or do something that far exceeds expectations of them within their autism story only to have their actions dismissed by experts. Speech is explained away as echolalia.
This dismissal of anything that exceeds expectations reminds me of an episode with one of our daughters. During the school summer holiday break, she read Matilda by Roald Dahl and loved it. I casually told the teacher as a polite way of pointing out that the basic readers handed out might not be appropriate for her and got the old line that she might look like she was reading it but she was just looking at the pages and pretending to read like all kids do. Needless to say that wasn’t a successful school year with this teacher unable to interpret a child’s behaviour outside preconceptions of what a child of that particular age should be able to do. For children with a label of autism, Aspergers or any other disability, the expectations will be even lower than for a “normal” child.
The discourse of Asperger’s Syndrome and autism is full of stories. Both parents and professionals need to remember that we are not just the story tellers but also active characters within those stories. It concerns me that the attempts to get rid of the “refrigerator mother” stereotype has merely replaced it with other unsatisfactory stereotypes – the “blameless, martyr parent”, the “crusading parent”, and the “also-afflicted parent” – rather than many individual and complex stories.
In their individual and complex story, it is to Owen family’s credit that they were very observant and made the effort to move towards their son rather than expecting him to move towards them all the time.