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LINCOLN CENTER¬ What does it mean to be an advocate for Autism Spectrum Disorder? Just as autism varies across a spectrum, so too do the answers to this question, as evidenced on Oct. 27 at "Autism and Advocacy: A Conference of Witness and Hope" in the McNally Amphitheater. The Francis and Ann Curran Center for American Catholic Studies sponsored the event.
It was full day event, beginning with a continental breakfast, followed by several sessions related to the varying types of autism advocacy, including, "Advocacy and Presence: Communities of Faith Engaging in Autism," "Autism and Hollywood," "The Varieties of Autism Advocacy," and "Catholic Education and the Spectrum."
The event featured several guest speakers including Timothy P. Shriver, son of Sargent Shriver, who started the Peace Corps and delivered the Fordham commencement address in 1963. Timothy is now the CEO and chairman of the Special Olympics and pioneers new forms of activism led by people who themselves have cognitive disabilities.
James T. Fisher, co-director for the Francis and Ann Curran Center for American Catholic Studies and professor of theology at Fordham University, one of 10 conference benefactors, said, "The conference is close to the heart of Fordham's mission of service to others; this is probably the first time issues of spirituality, faith communities and autism have been treated in public forum."
In discussing his expectations for the conference Fisher said, "We wanted to share an array of voices from the autism community as well as making others more aware of the diversity of autism experience."
Fisher's son, 7-year-old Charlie, is autistic.
Fisher introduced "Catholic Education and the Spectrum." Salvatore C. Ferrera, president of Xaverian High School in Bay Ridge, Brooklyn, then discussed the uniqueness of Xaverian among Catholic secondary schools in the New York Metropolitan area because they offer an academic program, known as the Ryken program, to autistic students.
Ferrera explained that the Ryken program is a special education program for students who demonstrate the cognitive capacity to master a rigorous college preparatory program but whose academic performance is hampered by a disability that interferes with their capacity to store, process or produce information.
Ferrera said that prior to the development of Ryken, there were no college-bound programs for children with learning disabilities in all of New York. Now, according to Ferrera, one hundred percent of the students who graduate from the program go to college.
"Normally, when you think of Catholic schools you think of excellence, but what about excellence for students who need that extra push? That's what we need to be looking at?" Ferrera said.
Many of the panel speakers shared the view that religious organizations can be great means of support for Autism. Lance Strate, associate professor of communications and media studies at Fordham University and past president of the Media Ecology Association, moderated the session on the varieties of
autism advocacy. Strate emphazised that another means of organizing advocates is though religious organizations. Strate said, "How can our prayers be acceptable to God if we ignore those without a voice? Advocacy is central to morality."
The conference also stressed the importance of self-advocacy. Kassiane Alexandra Sibley, an autistic advocate, coach and a teacher of gymnastics, dance and self-advocacy skills to autistic children, also spoke at the conference.
Sibley began by explaining that many people with autism are sound-sensitive and noise can actually hurt her. She then instructed everyone who felt the need to applaud to implement the "flap, don't clap" rule, where you wave your hand in the air in silence to show your appreciation.
Sibley then began her speech by saying, "I'm not broken. Don't try to fix me!" She expressed her frustrations with people who call themselves advocates for autism, but are actually searching for some kind of cure.
Sibley expressed that being an advocate for autism meant being an advocate for the person with autism and not for the eradication of autistics. She said, "We need to celebrate the lives of children. We need to look at the person and not at the services around the person."
"Nobody listens to the autistic child," Sibley said. She continued, "If a child communicates who finds it hard to communicate that should be respected. The autistic child has every right to say 'Shut up!' Sometimes, smarting off is self-advocacy."
Kristina Chew, assistant professor of classics at St. Peter's College in Jersey City, gave the final address of the conference. Chew keeps a daily blog devoted to her son, Charlie, and maintains an autism advocacy blog at www.autismvox.com. She said that advocacy is a derivative of the word "voice." "I'm called everyday to translate garbled words for my son," Chew said, "I'm called to take action. I'm called to advocate."
Chew expressed the importance of witness. She said that each day we must ask ourselves, "What is our child doing today? What can we do for them? What can we do for society?" Fisher told The Observer, "The conference seemed to confirm that religion and faith communities will play [an] increasing role in advocacy for and by autistic persons."
The event ended with a reception for all who registered.
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