Why Lable?

The week started with an article in New Scientist Tech “When sociable computing meets autism”
The researchers were interested by a film created by Amanda Baggs’s “In My Language”.
While reading the article, I began to feel uncomfortable. If scientists could invent a “mind reading tool” to help individuals with Autism to understand emotions, “then everyone will know what I’m thinking!” I said it aloud, Homer Simpson-style.

Luckily, I can’t stay on one topic for long, so I visited Antioch First Class to see what’s up for next weekend. Amanda Baggs is one of the people we can research for a brainstorm session during our first class with Stephen Shaw. I am delighted as the first time I ‘met’ Amanda she was a major contributor to autistics.org The real voice of Autism one of the many websites added to ‘my favorites’ when we first realized our child was on the Autism spectrum. The site was refreshing but sometimes shocking suggesting that other Autism websites and organizations we built by neuro-typical people who were ignorant of Autism and that their assumptions were insulting to those on the spectrum. It was the first site to make me think about how we as a family perceive Autism and how we frame it at home, in school and in our community. We thought we needed to make a positive introduction of Autism to our then 2 and ½ -year-old son who was diagnosed with Pervasive Developmental Disorder Non Otherwise Specified (PDD NOS), but we were not sure how. Did he need to know? When should we tell him? What should we say?
I had read books by Luke Jackson a young author with Asperger’s Syndrome from the UK. Luke compels parents to tell their children what “the thing” is as soon as they can. Others in the fields of therapy and research working with children on the spectrum, describe seeing a huge weight removed once they understand that the difficulties and differences that they experience have a name, and that there are other people like them.

Amanda defers to Jane Meyerding for her explanation of “why label?”. Jane describes her acceptance of the Asperger’s label “If I could understand my life for the first time only by understanding how my brain was different from the majority of brains, how much did I really have in common with all those neuro-typicals (NTs) out there, compared to whom I'd been judged inadequate so many times.”

As our family navigated our son’s early intervention process, we accepted the labels as signposts. The signposts told us which way to go. Rather than categorizing, or stereotyping behaviors and personality, the explanations of our son’s Autism also helped his sister, his peers, our friends and extended family. All of who now have experience of one person’s Autism to include in their understanding of the diagnosis. We chose to tell our son (and our daughter) about how we understood his Autism, and how others may understand it too. As our son grows, we hope he will find the explanations, labels and signposts helpful. We hope he will not be limited or undermined by the diagnosis and others perception of his ‘disorder’ Each day our soon-to-be six- year-old son shares more of his Autism with us, and as we build a better understanding, we make the least dangerous assumptions possible.

In her video Amanda states, “This is not a freak show.” And raising awareness and creating positive perceptions and changing society’s negative viewpoint can be a painful and slow process, so we take time to introduce people to Autism and we ‘show off’ our son as proud parents do. And every day he reminds us that he is truly an individual with Autism, and not “an Autistic’.


Research links-:

http://www.newscientisttech.com/article/mg19325917.100-when-sociable-computing-meets-autism.html Accessed 2.19.2007
http://www.youtube.com/results?search_query=Amanda+Baggs&search=Search Accessed 2.24.2007

http://amanda.autistics.org/ Accessed 2.19.2007

http://www.autistics.org/ Accessed 2.19. 2007

http://www.inlv.demon.nl/subm-brain.jane.eng.html Accessed 2.10.7007

http://www.jacquijackson.com/books/freaksgeeks.html Accessed 2.20.2007