Monday, June 29, 2009

What happens in San Diego

The first thing you notice is the fruit. Huge bowls overflowing with grapes, cantaloupe, honeydew, pineapple, watermelon, blueberries, strawberries, lit by the morning sun. The contrast with the usual conference fare of bagels, pastries and small anemic fruit plates sets the tone for the entire event. There will be little “junk food” here, little talk of an epidemic and what could be causing it. Participants have come to learn more about how to understand and support autistic people. How to listen to different voices, how to think about differences in ways that nourish and enrich human lives.

In the auditorium, I am greeted warmly by Dr. Anne Donnellan and Martha Leary. They have brought a gift from Australia, a companion for Squawkers McCaw. They point out the autism-friendly green room just off the stage, inviting me to make use of this space when I need time away from the crowds. Long before my co-presenters, Steve and D’oC have arrived, I am among friends.

I settle into my chair to listen to the first presentations of the conference. I hear that nearly everything commonly said to be true about autism is based on the observations of non-autistic people. Motives are attributed to observed “behaviors,” interventions are designed based on these interpretations, each step moving further away from the reality of autistic experience. Built upon this “invented knowledge” are a number of lucrative fields for “experts.” Yes, this is a problem, one which can only be solved by learning to listen to those who have direct experience of autism.

Most of those in attendance are educators. They are attentive, eager to participate. Each session could easily have been twice as long; there are so many questions. Relevant questions. Thoughtful responses. Two rows ahead of me, a woman types every word she can catch into her laptop. The typing is loud, but I know she will carry important thoughts away with her to share with others. I have a little book with me for drawing squares, and this helps make the sounds of the keyboard go away. Later, before Nan Negri’s session, she asks for anyone with sensory sensitivities to speak with her. She wants to warn us that loud music and noise will be used in some of her activities. She wants to know what accommodations we might need for this. She will let us know when something is about to happen, in case anyone needs to leave.

At one of the breaks, a woman approaches me and says how happy she is to see Squawkers. My daughter carries a Spongebob everywhere…I know from a comment she made earlier that her daughter is twenty years old. I know from the way she looks at me that she does not see this as a problem. Throughout the days of the conference, I have several interesting discussions about parrots. One man tells me about the Amazons that live at Ocean Beach. He has seen macaws flying over this campus several times throughout his years in San Diego.

Early Friday morning, Steve, Do’C and I take the stage to discuss autism blogging and a variety of issues important to the three of us. The audience cheers as Steve reads the conclusion of The Best Story Ever. Do’C asks some questions of the group. Who here has a child on the autism spectrum? Would you be willing to stand up and say that your child is not broken? One after one, they do this, with increasing intensity and conviction. The room echoes with the voices of women and men expressing pride in their children. Like any other parents.

They gasp at the depictions of autistic children as soulless and tragic. These sounds are important to me. They mean that the images are shocking and inexplicable, not necessary and matter of course as some would have you believe. They laugh at the idea that I am “not really autistic,” or entitled to a voice, as I have sometimes been told by others. They are as puzzled as I am that ideas like understanding and acceptance of differences have proven so controversial. After the presentation, a young woman, one of the teachers in the group, comes to the stage. I have been hiding, she tells me. She has not told many people about her diagnosis, she has been told that a “label” could only make her life more difficult. Nodding toward Squawkers, she asks me, Do you ever let anyone…

Yes. I place him in her arms. I have an animal too, she says. Later, she will bring him in from the car. She will join the panel session, speaking openly from the stage about her experiences as an autistic woman. Many others speak to me—the teacher who took off (for good, she promises) a puzzle piece necklace during the presentation, the mother who wept because she has searched for ten years for someone to agree with her that her son is an acceptable human being and did not need to be fixed.

They ask me to continue. They want to know more. I am happy for this, but unable to say much. I go to the quiet place for a long, long time. There will be a question and answer period this afternoon. There will be more time, another break, another bowl filled with apples, bananas, cherries and plums. Again, I am refreshed and revived by the spirit of acceptance at the core of USD's Autism Institute. As always, I will leave here with so much more than I brought to the table.


  1. Hmm. Very cool experience. If I end up being unable to become a medical doctor, then I might decide to become an autism specialist. Maybe help contribute to this turning of the tide, to help develop educational strategies from an autistic-friendly perspective. Either way, I can continue to review the literature and advocate for this direction, to develop it into the best practices and efficacy (keeping in mind what goals we want to work towards).

  2. Awesome. Awesome. Squawksome!!

  3. OH I wish I could have been there! You make it sound so wonderful. Thanks for blogging about it!

  4. Glad to hear that all went so well. And happy because the blogging about the conference will mean that "What happens in San Diego, won't stay in San Diego".


  5. It sounds like it was amazing and very useful. Thanks for writing about it all.

  6. Oh how I wish I could have been there. My child is NOT broken. I want to stand up tall and speak that loud and clear! WTG, Bev.


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