Friday, September 30, 2011

About the Autism Dialogues


Welcome to my blog. It is new. I started it this summer. Its name was chosen as a representation of the dysfunction within and surrounding the autism community and my wish to see the great divide between multiple opposing forces end. I have taken to simply posting the words of others who I felt should be heard by those parents who are from my community. I am not a writer. My grammar is atrocious. English, you see is my second language. But I am representative of a demographic of parents who have kept silent. I wanted to help others understand there is a hope beyond the discord. Hope that, in the long run, has 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

    http://lizditz.typepad.com/i_speak_of_dreams/2011/09/difficult-but-essential-conversations-week-one-roundup.html

    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

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