Most feel Autism Speaks but doesn’t listen, this mother proved them wrong.
Recently I posted about Autism Speaks from the point of view of the Autism Self Advocacy Network; well, the Ohio State Chapter of it anyway. To be fair, I thought I would highlight this blog entry by a mother of a child with autism. Her blogs are wonderful to read and you can tell she has a world of strength and dedication to the autism community. Her blog, “a diary of a mom”, is personal, informative, and to be honest, I’ve only read a few posts so far and can tell this is a must read. I intend to continue to highlight some of her posts on here because I think it’s important to have this connection to real situations and stories of triumph in what can be a trying and discouraging time in one’s life.
So to continue with the point of this article, let’s look at the other side of the Autism Speaks debate. The blog entry, “Autism Speaks – and Listens”, talks about this mother’s personal experience with the president of Autism Speaks, Mark Roithmayr. She begins to speak about a video that Autism Speaks released earlier that year and the outrage it sparked in the community. People that had been on the fence with the organization had decided to completely cut their ties. It’s tough being such a large, successful organization and keeping your members feeling like they are part of it and not just a “piece of the puzzle” that pays their salaries. Many have wondered, why should I continue to raise money for such a large, corporate organization when it’s obvious their overhead costs are through the roof. They have to pay that off somehow. How can we be certain that money we donate is all going toward research? We can’t, and quite honestly, in order for an organization to make as large a difference as it has by bringing autism to the front of the discussion, it needs a lot of money. Money to market their walks, money to produce t-shirts to entice walkers to donate, money to upkeep the donation websites which make it easier to collect donations, etc. One of the several issues people have with Autism Speaks is that there are no people with autism on the board. I don’t know the validity of that statement though I’ve heard it in multiple sources.
So this mother speaks to Mark Roithmayr over the phone and begins to explain to him how she is losing the energy to defend his organization with her friends and family. They were beginning to follow the lead of many who swear off Autism Speaks. Instead of following their lead however, this mother remembered her connection and recognized it was her responsibility to speak candidly about how she felt. She doesn’t go much into what they spoke about but instead ensures us that her points were listened to and respected. Shortly after a voice that she trusts joined the Scientific Advisory Board with Autism Speaks. As she wraps up her account with Mark, she reminds us that Autism Speaks may not hear everyone but they do have the capacity to listen and are still growing.