Autism awareness is an every-day, year-round undertaking for advocates and allies alike, and a month of awareness offers an introduction to how a more accessible world is possible—and being built every day.

Since the 1970s, April’s designation as World Autism Month has presented an annual opportunity to improve understanding of a diagnosis that, despite increased visibility in recent years, remains clouded by stubborn misconceptions.

Overcoming the biases, inaccuracies and assumptions born of not fully understanding the nuances of autism and the myriad ways it presents itself is part of why advocacy, programs, community outreach and education are truly year-round undertakings for those whose lives have been touched by the spectrum disorder and the professionals supporting them.

Awareness is certainly a solid first step in helping others outside the community learn more about autism—formally referred to as autism spectrum disorder, an umbrella term covering the broad range of developmental disorders that can involve widely varying degrees of intellectual, language and social difficulties, as well as repetitive behaviors—and realize that it’s neither an arm’s-length taboo topic loaded with shame nor something to be spoken of with pitying language implying a less-than status.

“I still see that there is a tendency to turn away from anyone who’s different,” notes Debra Beckman, MS, CCC-SLP, of Beckman & Associates, a speech therapist who’s worked in the field of communicative disorders since 1975. “It’s up to every family to tell their children that differences don’t mean it’s something that you avoid, it just means that you have to accommodate and be aware and be supportive—that’s what we want to see happen. … I think awareness and the push for advocacy and inclusion for autism is opening people’s eyes about all other kinds of neurodiversity out there.”

Breaking through incorrect information and other hurdles remains a part of autism advocacy, which makes the educational component of awareness campaigns so important as both individuals and organizations provide both clarity and deeper insight into the reality of the diagnosis.

“The general consciousness of the public and understanding that autism is indeed a spectrum has come a long way, but has a ways to go still: There will always be some amount of education needed,” says Benito Aragon, vice president of marketing, communications and business development at Quest, Inc. “Oftentimes, people have a natural inclination to identify all people with autism with one trait that may be common [but] there are no two people with autism that are exactly alike. …. The spectrum speaks to the diversity of those with autism, all with unique personalities, wants and needs.”

But there have been promising indicators demonstrating that deeper-level concepts beyond awareness, like acceptance, are making headway in society.

Meghan Carpenter, COO at Collaborative Solutions by Dr. Nikki Keefer & Associates, brings both a background in mental health and her experiences working in group settings to the practice that specializes in ABA, or applied behavioral analysis. She can’t help but notice that youngsters today are reaping the benefits of living in a better-informed, more inclusive world.

“A lot of my younger kids don’t even recognize that there was a period of time when they wouldn’t be allowed places,” she begins. “They don’t even think about it, whereas when I worked with adults 25 years ago, we would have to plan everything out: If we were going to a movie theater, we would have to call ahead to let them know we’re coming, we’d make sure there’s one-on-one staffing … and our adults knew that we had to do all that planning.”

Carpenter credits some increasingly popular initiatives and tools for chipping away at once-isolating stigmas, like movie times designed for an audience of neurodiverse youngsters, accessible theatrical performances catering to adults with sensory sensitivities, and noise-cancelling headphones that allow a high-support family member to enjoy outings like fireworks with a minimized risk for overstimulation. They not only extend societal participation to a wider population but also demonstrate how easy it is to adopt accommodations that make a space or experience more welcoming to everybody, all while helping those who struggle with social interactions grow more confident with every event they’re included in.

Actively working toward a society that meets neurodiverse people where they are by eliminating sensory, experiential or emotional barriers is one way of marking how successful awareness has been at fostering greater inclusion and acceptance, as simply wanting to understand how autism can impact a person can make all the difference. While it is better understood than it was even a decade ago, realities like misdiagnoses that confuse communication disorders for autism or receiving professional assistance too late and missing vital milestones can both inhibit an individual’s ability to thrive and perpetuate more harmful biases that take years to overcome.

Beckman notes that recognizing the individuality of each person is important in understanding just how uniquely autism and its behaviors manifest from case to case. Some with autism won’t even receive a diagnosis until later in life, if at all, while others will most likely always rely on caretakers like families, loved ones and a compassionate community—a collective unit that, in turn, also needs some unique support and education of its own.

“We give the parents tips to help: We don’t want to overload them, we want them to have adequate time to process everything, we want to be very specific in what we tell them,” she explains. “It takes a village. It’s definitely a group effort, and we are guided by what’s working best for the individual we’re treating. The whole family needs to be involved, and the good news is that the earlier you start, the sooner the skills are in place that will help develop a child’s social skills—and the sooner their family will learn how to accommodate them so they’re more comfortable in their environment.”

Having a range of diagnostic expression and needs-based support present in one community should serve as a demonstrative reminder that no two people are alike in how autism impacts their lives, though hearing the community’s collective voice is crucial in supporting them: Allies and advocates typically mean well and are instrumental in continuing the conversation around advancing beyond awareness to make that more accessible, inclusive world a reality, but actively responding to firsthand accounts describing the framework necessary to get there is how truly impactful change is realized.

And it begins with building a community that’s equal to the task, informed enough to know what challenges need to be bested and ready to shed any outdated perceptions that need to be unlearned to move forward, all of which starts with listening when autistic people assert their boundaries and preferences.

“When I first started working in this field, we had person-first language, where you always said ‘a person with autism.’ The autistic community has told us that they don’t appreciate that because they can’t separate themselves from their autism: It’s who they are, it’s the way they think, and so they are ‘an autistic person’—you can’t remove that from their identity,” Carpenter explains. “For years, it’s been other people saying what’s best for autistic people instead of everyone listening to them when they tell us what’s best for them. It’s really about recognizing that, just like everyone else, they have individual voices and opinions that need to be heard.”

“What we’re seeing amongst many young adults with autism is them taking ownership of their voice and how they define themselves,” adds Aragon. “Most of the industry uses people-first language, which, when established, was viewed as more humanizing in its approach. We’re now seeing young adults with autism taking hold of the identifier and saying, ‘No, I’m autistic.’ It is a development of empowerment to own one’s voice and articulate how they would like to be addressed. It is by definition, autism awareness.”

Beckman & Associates
Maitland
(407) 647-4740
BeckmanAndAssociates.com

Collaborate Solutions by Dr. Nikki Keefer & Associates
Winter Park and Oviedo
(407) 489-2121
Collaborative-Solutions.org

Quest Kids Therapy
Orlando: (407) 218-4300
Tampa: (813) 423-7700
QuestInc.org