Some 7 or 8 months ago, I visited Autism Speaks at its New York headquarters and had the opportunity to talk to many of its officers including Angela Timashenka its President and CEO. Among the many people there I was impressed by Andy Shih, Autism Speaks’ global ambassador and expert on Public Health. I have known Andy ever since one of our initial National Alliance for Autism Research (NAAR) meetings in the 1990’s and get to see him annually at the International Meeting for Autism Research (IMFAR).
My visit to Autism Speaks was extremely disappointing. Besides Andy, who was only visiting the headquarters before partaking in one of his frequent international travels, there was nobody knowledgeable in regards to any of the many different facets of autism. I was particularly unimpressed with Angela Timashenka who, after being at the helm of the organization for over a year, had never apparently taken time to read on the subject. It was my sad impression that her position there had to do with finances. She was, or is, primarily in-charge of fundraising. On my way to her office I found an erase board of financial goals and activities, none of which targeted patients’ needs. The thought crossed my mind that from the moment of her appointment, decisions at Autism Speaks had been guided by financial reasons and approval ratings, with little consideration for patient’s needs or research.
Several months after my visit, Autism Speaks announced it was redefining its initiatives and dropping the words “cure” and “research” from their mission/vision statement. In essence, Autism Speaks betrayed its base of constituents, those people who believe that autism is a medical condition in need of research, treatment, and who hope for a cure. It also betrayed the original organizations (NAAR and CAN) that joined together with Autism Speaks in order to sponsor, in an unified fashion, research and possible treatments. Finally, it betrayed the founding fathers of each of those organizations, tossing aside their beliefs as non-consequential or worthless relics of more primitive times.
My conversation with Angela veered in many different directions. However, it seemed to me surreal, at the time, that given my own interests she never posed a question regarding science. Well, she did pose one, “How is autism related to the Zika virus?” Sometime before our meeting several researchers had published on the possible rise of mental illness due to exposure to the Zika virus during gestation. In doing so, some of them conflated autism and schizophrenia, as well as extrapolated ideas on brain damage that have never been observed in postmortem or neuroimaging studies of autism. In my conversation, it was quite clear that talking to Ms. Timashenka about things such as “microcephaly” was futile as she was going through the motions of asking questions but lacked the intent of learning anything new. Our conversation ended as Ms. Timashenka started talking about Katie Wright (daughter of Bob and Suzanne Wright and founders of Autism Speaks), and I cut her short. Ms. Wright is the mother of Christian, an autistic child who lives in the severely affected side of the spectrum. Katie has learned about the condition from personal experience while Ms. Timashenka lacked in this understanding, and I would even say, in empathy.
I do not support Autism Speaks and, if the reader shares my values, neither should they. I support research and hard data from genetics, neuropathology, etc. indicating that autism is a medical condition. I readily acknowledge the plight of those at the more severe end of the spectrum and appreciate why they believe there is a need for treatment. I hope that Autism Speaks changes its direction, otherwise there will be a need for another organization to represent the core constituents that Autism Speaks has betrayed. Maybe a new organization would see money primarily directed to constructive aims, instead of paying for its huge overhead.