Fair Representation?
September 21, 2006 by Kristina Chew, PhD
Filed under Health
I write about autism here; I write about my son Charlie everyday at Autismland. I am not autistic; I am the mother of an autistic son. I have no professional credentials to signify my “autism expertise” (a degree in psychology, education, neurology); every day I experience, and learn, something more about autism in our life with Charlie.
Charlie is a boy of few words; he can speak for himself well enough to ask for things he want. Every day, I represent Charlie with my words, in the hope that doing so will create more understanding about autism and about Charlie.
It is true that Charlie never asked me to do this—to be his representative. I often wonder, am I getting it right? Am I being honest in more portrayal of Charlie; am I being fair and thoughtful in my writing about autism and autistic persons? If you are the parent or sibling or relative, of the teacher or other professional, of an autistic child or adult, do you ever think about how you are representing him or her?
Interesting question, Kristina… Yeah, I do think about it. B is capable of reading & understanding what I write, so sometimes it feels like a tightrope between being honest about my parental journey with him & worrying about possibly embarassing him. I have not invited him to read my blog, since it really is geared for parental-unit-types (& other adults). I have interviewed him for my blog & I did my very best to type verbatim what he said without filtering at all, out of respect for him. I do the same thing when I use quotes of things he’s said. I also try hard not to interpret his actions too deeply, since reading the blogs of autistic people has taught me that I have a lot to learn about the motivations for his behaviours. I expect someday it will be interesting to see what he thinks of what I’ve written about our family, when he’s old enough to have some perspective on it. When I write I try to keep my reasons for blogging, mainly to share our family experiences with others & to perhaps discover other ways of doing things through the comments made, clear in my mind, so I don’t get tangantial or whiny (I hope!).
Often. Often. And since mine is high-functioning and 14, we keep working on teaching him to be his own advocate. How successful will that be? Only time will tell.
Thanks so much for sharing on this—-I really do not know what Charlie might be thinking of how I represent him. I look forward to someday reading B’s own thoughts!