Some time ago, I was seated next to Mark Roithmayr, the president of Autism Speaks at an event at which I’d been asked to speak. It was only the second time I’d ever met him, but he greeted me as though we’d known each other for years. As the evening’s emcee made his way to the podium, we found our seats. Mark sat down with a stadium-style soft pretzel on his plate and I eyed it jealously. He saw me looking at it and tore off a piece and handed it to me. When I then ogled the glob of mustard on his plate he pushed it toward me and gestured that I should feel free. I felt completely inappropriate dunking my pretzel in his mustard. I mean, for heaven sake, who does that? But with an elbow to my ribs he whispered, “Go ahead. We’re family here.”
A few months ago, Autism Speaks put out a video that sent many of us in the autism community into a tail-spin. It was produced in a way that obviously sought to elicit shock and awe from its viewers. It very clearly demonized autism and for many of us, its methods were simply unacceptable.
When the video came out, I was angry, I was hurt and I was tempted to follow many of my friends who had long since turned away from Autism Speaks completely. But Mark’s words came back to me. “We’re family here.” So I picked up the phone and I called him. Family doesn’t turn away when feelings are hurt or mistakes are made. Family sticks around and works to make things better and to make things right.
I can only imagine how many calls went into him that day, and I was grateful that mine was among those that he returned amid the frenzy. We spoke at length and I did not hold back. I told him that I felt a responsibility to talk to him about how I felt. I told him that I was frustrated and that I was running out of ways to apologize for the organization to my peers, not to mention that I was losing the energy and the desire to do so.
Mark and I talked a great deal about the wounds in the autism community. We talked about the anger toward Autism Speaks and the ire that they so often draw from the very people who they purport to represent. We talked about some of the entirely justifiable reasons that so many of my fellow parents and advocates had divorced themselves from them.
We talked about the video. I told him that I firmly believed that if someone with autism had been on their board, the video never would have been released – or at the very least would have been released in a very different context. I told him how frustrated I was that that was not the case.
Mark listened – as he always has. He responded thoughtfully and respectfully to each and every point that I made. And he assured me then that much of what we discussed was already underway.
Yesterday morning, I couldn’t have been happier to hear that my dear friend, John Robison had accepted the invitation to join Autism Speaks’ Scientific Advisory and Scientific Treatment Boards. I trust John. I trust his voice; I trust his character; and I trust his judgement.
I wrote to Mark upon hearing the news.
I am thrilled to hear that John has signed onto the Scientific Advisory Committee. This moment has been a long time in coming, and as I’m sure you remember from our somewhat emotional conversation on the topic some months ago, I couldn’t be happier about your choice. I have a great deal of confidence in John and I don’t doubt for a moment that he will bring a highly valuable perspective along with his wealth of knowledge and experience to the role.
Autism Speaks has the power to do so much good for so many. My greatest hope is that John’s voice will be heard and respected on the board and that his presence and influence will be able to help heal some of the deep wounds in our community. This a great and important first step toward creating a more inclusive organization that truly understands and respects the wide variety of perspectives of those on the autism spectrum and those of us who fight to give them a better life.
As always, I am grateful for all that you do for our kids.
Like all of us, Autism Speaks is a work in progress. It is a living, breathing organism – and it’s fallible. John’s appointment isn’t a magic elixir. But, as I said to Mark, I do believe that it is a great first step.
And above all it proves to me that Autism Speaks is not just speaking, but listening. Because that is what family does.