By Lisa McCauley Parles
Two years ago, when I was asked to speak at The United Nations for World Autism Awareness Day I was honored. When I saw that the topic was “The Road to Independent Living,” I wondered if the organizers were familiar with my work focusing on individuals with severe autism. But after I was told they were looking for a variety of perspectives, I eagerly accepted the invitation. As I sat in the great hall listening to other speakers I was surprised, saddened and then truly angered.
Though I have worked in the area of autism advocacy for decades, I had never encountered such direct hostility toward families and guardians struggling to help and protect their severely disabled loved ones. One speaker suggested that the use of iPads for choice making could make guardianships unnecessary. I thought to myself, I am confident that my son’s surgeon would not have equated his selection of cheeto vs. juice as informed consent for complex eye surgery.
As parents were portrayed as controlling enslavers my anger grew. When a speaker proclaimed that guardianship is “the equivalent of slavery and genital mutilation” it boiled over. On that day at the U.N. I was overwhelmed by the intense need to tell our stories, to organize families, researchers, providers and others and to bring facts and reality forward.
You can watch my U.N. presentation above, where I address the real life, often heartbreaking, decisions autism parents need to make every day.
World Autism Awareness Day is this Tuesday, April 2, 2019. Will the public and world leaders again be fed a narrative that ignores our population with severe autism and vilifies parents? Let's hope not. The launch of the NCSA is a critical step towards effective advocacy for the needs of individuals with severe autism and their families. For more information, see ncsautism.org.
Lisa McCauley Parles is an attorney based in New Jersey. She is a member of the board of NCSA.