By Kami-Leigh Agard
“What’s in a name? That which we call a rose, by any other name would smell as sweet.” Four centuries ago, when William Shakespeare penned these lines in the classic, “Romeo and Juliet,” the inference is that names are a convention to distinguish things or people, but do not have any worth or meaning. However, for some advocates in the autism community, a name means a hell of a lot—thus the push for April to be recognized as Autism Acceptance Month as opposed to Autism Awareness Month. As an Autistic self-advocate wrote in her blog, “Neurodivergent Rebel,”: “Being aware of something is not the same as taking action. ‘Autism Awareness’ is minimal in that it doesn’t move further into taking steps as to what’s needed to include, empower, and accept autistic people…Most people are aware of autism now and know autistic people exist. However, many people still fail to understand what it means to be autistic.”
The observance of Autism Awareness Month dates back to the early 1970s, when scientist, Dr. Bernard Rimland, a father with a son on the autism spectrum, founded the Autism Society of America (ASA), now the world’s largest autism organization. Frustrated by the lack of information and services available for people with autism, in 1972, Rimland with fellow autism advocates, organized the first autism awareness event, “Autism Sunday.” This soon evolved into National Autistic Children’s Week. A decade later, in 1985, Congress officially recognized National Autism Week, which then led to President Ronald Reagan issuing the first-ever presidential proclamation, declaring April as National Autism Awareness Month. Since then, every U.S. president has issued a proclamation recognizing Autism Awareness Month.
Fast-forward to 2008, the United Nations designated April 2 as World Autism Day. Then-U.N. Secretary-General Ban Ki-moon proclaimed, “I welcome this growing international chorus of voices calling for action to enable children and persons with autism to lead full and meaningful lives. This is not a far-off dream; it is a reality that can be attained by promoting positive perceptions about autism as well as a greater social understanding.”
The national push to change the name of the observance from “awareness” to “acceptance,” was driven by Paula C. Durbin-Westby, an autistic disability rights activist with an autistic son, who demanded a “corrective to the negative images of autism in ‘awareness’ campaigns.” On April 1, 2011, she organized the first Autism Acceptance Day celebration. Through the influential channels of social media, it quickly became popular and expanded to Autism Acceptance Month in the Autistic community as participants spread the word through Facebook and other platforms.
I recently conducted a poll on the Rockaway Beach Autism Families Facebook group page to see which moniker, “Autism Awareness” or “Autism Acceptance” members preferred. Seventy-four percent voted for “Autism Acceptance.” Others suggested, “Autism Empowerment,” “Kindness for Autism,” and even “Love for All Special Needs People.”
I’ll go back to Shakespeare’s line, “What’s in a name…” Not too long ago, when I was in the novice stage of autism parent advocacy, I was buying every box of blue lights I could get my hands on, encouraging people to light it up blue; upholding the controversial puzzle piece, as if it was the holy emblem of the autism community, not unlike what the crucifix symbolizes for Christians. However, today with education and continuing exposure to the vastness of the autism spectrum, I’m increasingly understanding how each individual’s and family’s needs and strengths are so unique and personal, like a fingerprint. So, whether it’s autism awareness, acceptance, inclusion, empowerment—I believe they all express the same sentiment. The autism community needs support, respect, love and opportunities for advancement, and April 30 is not the expiration date. Just as our triumphs and challenges evolve every day, so do our needs for purposeful lives.
On Sunday, April 23 at 11 a.m., join Rockaway Beach Autism Families at Rockaway’s first-ever Walk for Autism on the boardwalk! Walk kicks off at Beach 96th Street and the boardwalk and ends at Beach 126th Street. For more information, visit: Rockaway Beach Autism Families on Facebook/ Instagram or visit: rockawaybeachautismfamilies.org.