National Autism Awareness and Acceptance Month – An Advocacy Guide
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“As the fastest-growing developmental disability in the US, you or someone you know and love is a part of the autism community. The autism spectrum is broad, wide, and varied, presenting millions of different experiences and lived truths. Each person with autism is unique just like every neuro-typical person is unique, but the wants, needs, and desire to live a meaningful, quality life are the same.”
Kristyn Roth, Chief Marketing Officer at the Autism Society of America
Every April is World Autism Month, which kicks off with the United Nations-sanctioned World Autism Awareness Day on April 2. For family and friends of people with autism, each day brings a new awareness of autism. But many people who are not close to someone with autism still have questions about just what autism is and how they can help.
April has widely been known as “Autism Awareness Month” in the United States as a way to empower autistic individuals and their families. In April 2021, The Autism Society of America, alongside the greater autism community, formally shifted references of Autism Awareness Month to Autism Acceptance Month. Christopher Banks, president and CEO of the Autism Society of America, explained that “the shift in terminology fosters acceptance to ignite change through improved support and opportunities in education, employment, accessible housing, affordable healthcare, and comprehensive long-term services.”
According to the UN, World Autism Awareness Day and Autism Awareness Month highlight the goal of helping people with autism lead full and meaningful lives as an integral part of society. Autism was originally defined as a diagnosis in the 1940s, but the understanding of autism as a spectrum with different manifestations and treatment needs didn’t occur until the loosening of diagnostic criteria in 1994. After that, there was a corresponding increase in the rate of autism diagnosis, which has come with an increased demand for autism-related healthcare and social services
Autism is a lifelong neurological condition that manifests during early childhood. It affects people of all genders, races, and socio-economic statuses. Because there is a range of behaviors and characteristics associated with the autism spectrum, there is also a gamut of support services and confusion about just what autism actually is. One key for most people who are promoting autism awareness is that there must be accommodation and acceptance of the many neurological variations that arise with this condition.
Having the month of April dedicated to autism awareness helps counselors, psychologists, social workers, psychiatrists, and the general public educate themselves on the issues that affect people with autism. Learning more about autism and the goals of autism awareness is the first step in increasing understanding of this condition.
Meet the Experts
Kristyn Roth, Chief Marketing Officer
Autism Society of America
Kristyn Roth is the chief marketing officer at the Autism Society of America, the largest grassroots autism organization in the United States. The Autism Society of America annually serves more than 600,000 individuals and families affected by autism. She joined the Autism Society staff after serving on the national Board of Directors for two years as the organization’s youngest board member, where she also chaired the Marketing Committee.
Roth also co-founded Make Waves Family Foundation, a nonprofit that supports adults with autism by funding initiatives focused on neuro-diverse employment, replicable housing models, and social engagement programs to allow autistic individuals to achieve a happy, quality lifestyle.
Roth is a Boston College Eagle and alumnus of the Carrol School of Management. Born and raised on the South Shore of Massachusetts, she made her way to California for year-round beach days, where she lives with her husband, Alex, and her golden retriever, Mahi.
Secretary and Treasurer of Kind Tree – Autism Rocks
Tim Mueller is the secretary and treasurer of KindTree – Autism Rocks, an almost all-volunteer non-profit organization in Eugene, Oregon that provides support, services, and information about autism.
What is Autism? Understanding and Accepting Those Affected
One of the successful endeavors of KindTree – Autism Rocks is a popular Friends & Family Camp for people with autism, where they can be themselves and be surrounded by other people with autism as well as people without autism who accept all of their behaviors and needs. The first camp, in 1997, hosted six folks with autism. The last camp weekend in 2019 hosted 170 family members, caregivers, and individuals with autism and about 100 Kind Tree volunteers. Mueller doesn’t have autism, and when he got involved with the organization as the treasurer in its first year, he had not known people with any sort of developmental or behavioral challenges like autism.
The first weekend that Mueller spent at the camp, he experienced people who were non-verbal, people who repeated the same word phrases over and over again, people who made noises, people who made repetitive motions, and more. “The first weekend I spent at the camp with these people was an amazing experience,” he says. “They were so different than I was, but I came to understand that all people were pretty much the same. Some people have different abilities and need support in different ways. That’s what we try to understand and provide.”
Knowing some of the more frequent behavioral characteristics of people on the spectrum will help increase awareness and acceptance when you encounter them in the grocery store, on the street, or anywhere else. “Be aware of and accept different behaviors that you probably think are odd,” says Mueller. “For example, people with autism often don’t like to look at you while they’re talking. Sometimes that’s one of the more common symptoms because thinking of what to say while they’re looking at you is overwhelming. So you might feel insulted that someone isn’t making eye contact with you, but try to understand that they are handling the situation as best they can.”
You might observe someone with autism flapping their hands. Or even turning around in a circle while they’re standing in a crowd. “Try not to let things like that bother you,” says Mueller. “When you’re around someone who does things like that, it doesn’t mean that they are bad. It’s because they have autism and their perception of the world is different.”
The Important Work of the Autism Society of America
One in 44 children is diagnosed with autism as of 2018. “As the fastest-growing developmental disability in the US, you or someone you know and love is a part of the autism community,” explains Kristyn Roth, the chief marketing officer at the Autism Society of America. “The autism spectrum is broad, wide, and varied, presenting millions of different experiences and lived truths. Each person with autism is unique just like every neuro-typical person is unique, but the wants, needs, and desire to live a meaningful, quality life are the same.”
Often, those with autism display social interactions that don’t follow the norms; they learn in different ways; they may have highly focused habits or interests; they may not like changes to routines; they may have difficulties processing sensory information. Some people with autism exhibit mild forms of these tendencies while others exhibit more intense versions of these tendencies. Some may exhibit all of these tendencies or just one or two. The lack of understanding about this condition contributes to the difficulty that people with autism have in being accepted by the larger society.
The Autism Society uses the hashtag #CelebrateDifferences, and this is especially important for Autism Acceptance Month. “Every day, we work to create connections, empowering everyone in the autism community to live fully,” says Roth. “The greater community can be the connection this April by spreading awareness for early diagnosis, promoting inclusion in the greater community, and practicing acceptance in everyday life.”
How the General Public Can Help with Autism Awareness and Acceptance
Roth explains that awareness leads to inclusion and fosters acceptance. Understanding the signs and characteristics of autism is important because that awareness is needed to create accommodations and/or a supportive environment. “Providing accommodations produces better outcomes for employment, healthcare, education, socialization, and more,” says Roth.
Since autism presents during childhood, early recognition and diagnosis give the person and their families the best chance of receiving the appropriate support for a healthy and full life. Usually, when a child is referred for autism, the parents may feel that their child has a developmental delay or disability. A diagnosis of autism can take months because there are a lot of different conditions that should also be considered if a child is referred for autism.
Many people with social or communication difficulties or who exhibit repetitive movements or behaviors may or may not have autism. It can be a complex diagnosis and other conditions can co-occur with autism, but the diagnosis is very important for most people because access to treatment resources and support often depends on having the diagnosis.
“The autism experience is different for everyone,” says Roth. “It is defined by a certain set of behaviors and is often referred to as a ‘spectrum condition’ that affects people differently and to varying degrees. At first glance, some people with autism may appear to have an intellectual disability, sensory processing issues, or problems with hearing or vision, and the diagnosis of autism may become more challenging.”
Roth says the autism community wants equitable services and inclusion so that individuals can fully participate in society. “For individuals with autism, acceptance is often one of the biggest barriers to being valued and finding and developing a strong support system,” says Roth.
Celebrating Autism Awareness and Acceptance
Roth urges people to realize that acceptance doesn’t mean being complacent. Having acceptance of the autism diagnosis is only the first step. Going beyond acceptance means allowing autistic individuals to be meaningful members of society. “Fostering acceptance is critically important to improving opportunities in education, employment, accessible housing, affordable healthcare, and comprehensive long-term services and support,” Roth says.
“Anyone can enact change and help us in our mission to create connections, empowering everyone in the autism community with the resources needed to live fully. Spreading awareness for early diagnosis, promoting inclusion in the greater community, and practicing acceptance in everyday life are all ways to become more supportive of the autism community.”
The Autism Society currently has a nationwide network of more than 70 affiliates that connects people to education, advocacy, support, information and referral, and community programming. “A person looking to get involved can reach out to their local affiliate to support events and participate in other volunteer opportunities,” Roth suggests.
People can also support autism-friendly initiatives through fundraisers and making monetary donations.
Resources For Autism Awareness Month
- AutismSociety.org: The mission of the Autism Society of America is to create connections, empowering everyone in the autism community with the resources needed to live fully. Contact their national helpline at 800-3-AUTISM to speak with a trained information and referral specialist.
- KindTree – Autism Rocks: Founded in Eugene, Oregon, in 1997, KindTree – Autism Rocks provides support, services, and information to empower and improve the quality of life for individuals and families living with autism, and the professionals who serve them. Kind Tree is a grassroots, all-volunteer non-profit.
- National Autism Center: The National Autism Center is May Institute’s Center for the Promotion of Evidence-based Practice. It is a nonprofit organization dedicated to disseminating evidence-based information about the treatment of autism spectrum disorder (ASD), promoting best practices, and offering comprehensive and reliable resources for families, practitioners, and communities.
- National Autism Association: The National Autism Association provides advocacy, education, tools, research, and awareness that promotes understanding, compassion, and respect for individuals with autism.