Years ago I saw Autism is a World, about Sue Rubin who is non-speaking and Autistic. I was amazed by her and thought how incredible she was. I had similar thoughts when I read about Tito Mukhopadhyay, saw the news program about Carly Fleischmann, watched and listened to Amanda Baggs‘ You Tube video… there were others, all non-speaking for the most part, all Autistic and each time I was struck by how “miraculous” they were. They gave me hope, but each one, individually, seemed incredible, too good to be true. The word “miracle” implies a rare occurrence. I didn’t dare believe any of these Autistic people were indicative of a larger truth. When it came to my daughter, I could not make the connection.
I have to interrupt this post for a second because last week I went through the blog and deleted all the posts I thought might hurt my daughter’s feelings if she were to ever read them or ask me to read them to her. (That I realized I needed to do this, is yet another example of how far I’ve come!) I am not trying to erase the truth or the past, I just do not want those posts in the public domain for all to view, at my daughter’s expense. I do not want people coming to this blog to read an old post and leave thinking I am supporting or encouraging people to try any of the various treatments we once did. There is plenty of negative, stereotyped thinking going on when it comes to autism and Autistic people, I don’t want this blog to be one more place people come to read that.
As I was going through old posts I was confronted with the level of panic and desperation I felt not so long ago. I was confronted with how completely I had bought into the way autism is represented in the world, encouraged by the media’s representation and the public’s ignorance of it. None of which is in accordance with these stories of Autistic individuals, unless they are “miracles”. So when I heard about people like Carly and Tito and Sue, I could not make the leap required to apply what they were accomplishing, to my daughter who was then in a private, special education, school being taught the same fairy tale going on two years. A place where, as well-meaning as they certainly were, they were not taught or trained to presume competence of their students. The curriculum, if you could call it that, was not remotely age appropriate, yet she was loved and safe, though not challenged intellectually; it seemed it was the best option available to us.
I was fortunate. I had some terrific people who recommended books and documentaries that I’ve included on the Resources page of this blog. I was asked to speak at the Autcom Conference and met a great many more Autistic people who do not speak or speak intermittently or un-reliably, but who are communicating a great deal. So many, that it finally began to occur to me that maybe, just maybe, my daughter might be one of them. Perhaps they were not the exceptions, perhaps she too could learn to communicate as so many of the Autistic people I was meeting were. And once I made that connection, once I stopped viewing each person as a miracle, but began to wonder whether given appropriate accommodations this was more the norm, than not, that was when I was able to understand what practicing presuming competence really meant. And the more I was able to do this, the more my daughter rose to the occasion. The more she proved she could and did understand, the more I presumed her competence and on it goes…
Em types us a message that astonishes us ~ April, 2013