An avalanche of responses inundated the internet once Steven Silberman released his OpEd piece about Autism Speaks last week. Many wrote, tweeted and blogged in defense of a non-profit that many would say is single-handedly responsible for increasing autism awareness in the United States. In his article, Silberman critiqued the organization for a leadership that does not include the voice of those on the spectrum.
"Imagine a world in which the leadership of the NAACP was all-white; now consider that not a single autistic person serves on the board of Autism Speaks," he writes.
A number of taste-makers in the autism community took to YouTube and their personal blogs to respond to such critiques. Specifically, Matt Asner, Director of Corporate Development of Autism Speaks, responded in a video in which he read an open letter from his father, Ed Asner:
"Silberman is quick to criticize an annual fundraiser at Autism Speaks called Light Up The Blues. I was lucky enough to be in the audience this year, and one of the highlights of this concert over the last three years has been the event's celebration of the talents of individuals with autism. Spencer Harte, Nick Guzman, Rio Wyles, Matt Savage, Lexington Aaron, and Xolie Morra have all graced the Light up the Blues stage with some of the biggest stars in music and have risen to the occasion.
[Silberman] also criticizes the Autism Speaks walks, which bring hope to thousands of families across the country and connects them to valuable resources. Silberman asks readers to imagine an all white NAACP, making a preposterous comparison to the executives and board of Autism Speaks. Many of the board members and executives of Autism Speaks have children on the spectrum, and I'm one of them. There are parents, parents who, like me, want to see their children and adults living with autism have the best chance at a life they richly deserve. While I agree that it is time for an individual with autism to be on the board, this comparison is misleading, at best."
Others took to the LA Times comments section, such as parent of a son with autism, Chris Feyrer.
"Hate on Autism Speaks all you want, but what people need is positive, alternative charities that are doing the right things in the right way. Even Reddit didn't know any good alternatives to Autism Speaks. Steve Silberman, if you are going to criticize likely the only autism-related charity people know about, offer some viable alternatives so people can move their money accordingly."
It appears that Feyrer looks at Silberman's rant as useless and unproductive without providing alternative solutions. It's easy to criticize without providing a new option.
Those attune to the article's back and forth likely were aware of the personalized response from Liz Feld, President of Autism Speaks, entitled a "Call for Unity." She states that Silberman's article is a "disservice to the millions of people who have both supported and relied on Autism Speaks over the last ten years. In fairness to these people, and to the countless volunteers and champions who have worked so hard to improve the lives of those affected by autism, it is important to set the record straight."
Unfortunately, parents such as Shannon Des Roches Rosa, one of CafeMom's autism experts, and one of Babble.com's Top 25 Autism Bloggers, did not take kindly to her response.
"Liz Feld may be the President of Autism Speaks, but her recent A Call for Unity letter is not exactly presidential. Admitting that one has made -- and can learn from -- misfires is not easy. It takes a lot of [...] humility. [...] I'm not going to hold my breath, though. Autism Speaks has a lot of apologizing to do. A lot. So until they start listening -- something they've shown very little ability to do -- the criticism will continue." (source: Thinking Person's Guide to Autism).
Autism TV Show host, ardent Autism Speak's supporter, and mother to a 9-year-old son with autism, Shannon Penrod, commented on the article in her vlog, urging those that are not happy with the organization should start their own movement one of their own that better aligns with their beliefs.
Matt Asner, leaves us with these poignant words for those following the debate:
"I work at Autism Speaks. I chose to work at Autism Speaks because I believe in what they're doing. I believe that they are the only organization out there that can move the way we need to move in this world. The only way for us to really do it is to work with other people and other organizations and to be together on this because it's a very small world. We need to stick together, or it's not going to get done.
I have three sons with autism, all differing levels of autism. Each one of them I feel incredibly blessed to have in my life. I have a brother with autism who is 27, who is finding it very hard to get a job. I think it's important for him to be able to work in this world as an individual with autism. I'm going to continue doing everything I can to fight and make sure that they have the life they need, that they have the life they deserve, because they deserve it. They deserve to have a chance at a fruitful life. I believe that what Autism Speaks is doing is going to help them get there."
As an active member in the autism community, with no formal affiliation or financial relationship with Autism Speaks, I think it is important for us to engage in these discussions openly and often, with respect and tolerance for both perspectives. The more our community engages in these challenging conversations, the more likely we will be able to find a solution that addresses both sides.
Is it fair to say that perhaps Autism Speaks does a lot more for parents who have children on the spectrum, than the individuals who are on the spectrum themselves? What do you think?