Friday, September 30, 2011

About the Autism Dialogues

Welcome to my blog. It is new. I started it this summer. I am not a writer. My grammar is atrocious.  But I am representative of a demographic of parents who are underrepresented in the autism conversation. I wanted to try and reflect that feeling of being outside of discourse and public policy. I also want to infuse a kind of hope. Hope that, in the long run,  painful as such dialogs may be, they have the potential to change the quality of life for both our children and the only adults who truly understand what it means to be autistic.

Shannon Des Roches Rosa moderated a series of dialogs on The Thinking Person's Guide to Autism. But as I read each day's dialog, I felt outside the conversation. No one appeared to speak from the perspective of my community of parents.

Now I've had a change of heart. I think Kristina Chew and Paula Durbin-Westby wrote eloquently from the perspective of parents in a way other parents in my situation can understand. I am someone who has gone out in search of autistic adults who are nonspeaking like my son, in the hopes that listening to them might give me an insight into how to best help my son. I am also quite painfully familiar with the uglier side of discrimination both as a matter of daily life and as my son’s parent and advocate.

My son will be an adult in the blink of an eye. So I must try to understand self-advocates as much as I can and I hope my son is someday able to advocate for himself. If he can’t do so, I must continue to be his voice. My daughter is a medical interpreter. When you interpret you are the voice of another person. You don’t say what you want or what you think is best for the patient. You translate verbatim as much as linguistically possible. That is what my goal is should he not be able to self-advocate. To be an interpreter for my son.

At some point everyone in this community must grasp that we are part of an effort to gain civil rights for our autistic children. To parents like me, who are not autistic, don't give up. Keep reading. I'm trying too. I'm determined to cross that divide with you.

1 comment:

  1. Hi Kerima,

    Thanks for the thoughtful post.

    I am keeping a list of responses to the dialogues at

    Yuurs is #32.

    Disclosure: I am a co-founder and co-editor of The Thinking Person's Guide to Autism.

    An aside: while Shannon had the original conversations with Robert Rummel-Hudson, Zoe, and Ari Ne'eman, the decision to host the dialogues was a joint and unanimous editorial decision, between Shannon, me, Carol Greenburg, Emily Willingham,, and Jennifer Byde Myers