by Amy Gravino
I first met Suzanne Wright in New York at the Permanent Mission of Bangladesh, just before I spoke at the United Nations for World Autism Awareness Day in 2011. The panel on which I sat was sponsored by Autism Speaks, a fact that filled me with both gratitude and trepidation. I knew who Suzanne Wright was, but could not have been prepared for the overwhelming, somewhat intimidating experience of meeting her for the first time, a moment forever seared into my memory.
Suzanne Wright was indomitable—single-minded in her determination to raise awareness, one of the paramount goals of Autism Speaks since it was founded by Suzanne and her husband Bob in 2005. After the U.N., I was asked to join the Awareness Committee of Autism Speaks, to represent individuals on the spectrum in meetings about the organization’s advertising and fundraising campaigns. It was a role that I did not take lightly, and that I hoped would afford me the opportunity to affect changes to Autism Speaks from within. It was also because of this role that I was offered a unique–and sometimes sobering–vantage of Suzanne Wright’s world.
In 2014, I went to the 8th Annual Autism Speaks Chef Gala, at Cipriani Wall Street. The event and the room in which it was held, with its towering white columns, elegant appointments, and immaculately dressed attendees, made me feel like Cinderella trying to find her place at the ball. Chopped‘s Ted Allen served as host for the evening, but it was Suzanne Wright who commanded the greatest presence and cast the longest shadow as she stood on the dais and gave her speech.
Suzanne’s presence propelled her forward into the hallowed halls of government to bring about changes that profoundly affected the autism community in many different ways. In 2016, United Healthcare issued a press release stating that it would begin providing ABA (Applied Behavior Analysis) coverage across all group plans, the fruit of decade-long insurance reform efforts on the part of Autism Speaks and spearheaded by Suzanne Wright.
Yet just three years earlier, in November of 2013, Suzanne released “A Call to Action,” a controversial op-ed that inflamed the passions of numerous autistic individuals and their families, and caused the resignation of self-advocate John Elder Robison from Autism Speaks’ Science and Treatment boards. While the intended audience for the op-ed was politicians and members of the general public not directly impacted by autism, individuals on the spectrum were troubled by the piece’s use and emphasis on fear-based rhetoric. The subsequent outcry was significant, and as a result, the already-great divide between Autism Speaks and self-advocates widened even further.
Suzanne Wright’s tenure with Autism Speaks had its share of ebbs and flows, but at her core, she was a grandmother searching for a way to help her grandchild. Because of her tenacity, a national conversation on autism began, and the word autism came to be present on people’s lips. As we reflect on the legacy Suzanne has left behind, we must also look ahead at how we can move that conversation in an even more positive direction, to ensure a better and brighter future for all individuals on the autism spectrum.
Amy Gravino (on the autism spectrum herself) is a Certified Autism Specialist and college coach for individuals with Asperger’s Syndrome, and the founder of A.S.C.O.T Coaching, LLC. She is a seasoned public speaker, having spoken at conferences, professional development workshops, support group meetings, and more since the age of 14. Amy offers her services as a college coach, autism consultant, and public speaker. Visit her website at amygravino.com.
Suzanne and her husband, Bob Wright founded Autism Speaks in 2005. Ms. Wright died of pancreatic cancer July 29, 2016, at home in Fairfield, Conn. She was 69.
Interview with Stephen Mark Shore about his appointment to Autism Speaks board
Autism Speaks Aut to Listen to John Elder Robison