Autism ‘Awareness’ Versus Autism ‘Acceptance’ Month

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 “Romeo and Juliet,” the inference was that the intrinsic qualities of a person or object matter more than their labels or names. For example, in the play, Juliet argued that if Romeo were not named Montague, he would still be his perfect self, just as a rose would retain its sweet scent regardless of its name. However, for some advocates in the autism community, a label 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 American research psychologist, Dr. Bernard Rimland, a father with a son on the autism spectrum, founded the Autism Society of America. Rimland’s first book, “Infantile Autism,” was instrumental in changing attitudes toward autism. 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 led to then-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.

I 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, encouraging people to light it up blue, and upholding the controversial puzzle piece, as if it were the holy emblem of the autism community, not unlike what the crucifix symbolizes for Christians. However, today, with education and continued 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, 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.

This Sunday, April 26, 11 a.m., join Rockaway Beach Autism Families (RBAF) at our 4th Annual Walk for Autism on the boardwalk. The walk kicks off at Beach 95th Street. This year, we’re excited to announce that we’re back teaming up with Rockaway St. Camillus Special Olympics, and leading the Walk is Scholars’ Academy Marching Band. Plus—T-shirts for sale, giveaways and boardwalk vendor fair. Afterparty, 1 p.m. to 5 p.m. at Rockaway Beach Pickleball & Golf (97-25 Beach Channel Drive) with live music from the Rock-A-Wades. To sign up for the walk and more info about the afterparty, visit: https://www.rockawaybeachautismfamilies.org/rbaf4thannualwalkforautism or follow Rockaway Beach Autism Families on Facebook/Instagram.