Note: Dana Marnane's wonderful responses to my interview questions were quite detailed and lengthy. I was not able to quote John Elder Robison in full, but I am providing his entire quote here, as it is very thought provoking and balanced. John is a wonderful man who will be writing the forward to my book.
John Elder Robison's full quote:
First of all, I applaud you for opening a dialogue with the folks at Autism Speaks. I know many on the AFF forums have been highly critical of the organization, but it’s here to stay, and we will all achieve far more if we get together and talk.
As you know, I serve as a member of their science board, which decides what research to recommend for funding. I’ve also served on boards for the Federal Centers for Disease Control (CDC) and the National Institutes of Health (NIH.)
As a member of those science boards, I am committed to developing tools, therapies, or treatments to reduce the pain and hardship of autistic disability in whatever form it may appear. I’ve known some of that emotional pain myself, in the form of social isolation. I’ve worked with others on the spectrum who live with real physical pain, as autism and its comorbid issues has proven physically crippling
Autism affects us in many different ways. For some (like me) the hurt is in my mind, as I feel the pain of being forever an outsider. My son is now going down that same road, as a 21-year-old with Asperger’s. Do I want to develop therapies and tools to help him have a better life? You bet.
Would I call that a cure? Of course not. I would call that helping him learn to fit in and get by, to have a better life.
Is the thing that helps my son for you? I don’t know. I cannot say which of you may want to embrace the tools that are being developed. Each of us must make our own decision. Some choose to live in isolation and enjoy that. Others want to engage the social world more fully, and for that we generally need help.
I am also aware that there is a large autistic population who cannot speak for themselves. I do my best to make sure we work to help those people too. For example, we are exploring therapies that will help relieve the terrible gastric distress some people with autism feel. We’re hopeful that we’ll be able to develop tools to give non-verbal people better ability to communicate. Obviously those things are not relevant to everyone on the spectrum, but for those who need that help, it will be life changing.
That, in a nutshell, defines my involvement with Autism Speaks.
Autism Speaks was founded by parents and grandparents; such people necessarily have a different worldview from those of us on the spectrum. As the organization has matured, it has begun seeking alternate points of view from folks like you and me. Everyone I’ve met has been willing to listen, and I have seen how our dialogues have reshaped the organization is what we all agree is a good way.
I invite you to join the conversation.
John Elder Robison
08 Nov 2011, 3:50 pm
