April has been known as Autism Awareness Month for more than 10 years. I remember the excitement when April 2 was established as World Autism Awareness Day by the United Nations General Assembly in 2007 — it was heralded as a victory for people on the autism spectrum.
Like many awareness movements, the autism awareness movement was initiated by parents and professionals with only the best of intentions. At the time, the prevalence of autism (now called autism spectrum disorder, or ASD) was about one in 90 individuals. In 2023, the Centers for Disease Control and Prevention estimated the prevalence to be about one in 36. Today we are likely to know someone who has a family member with autism or have a family member on the spectrum ourselves.
And while awareness was great in 2007, it’s no longer good enough in 2021.
A meme I saw recently (reportedly created by someone on the spectrum) goes like this: Autism awareness means you know I’m here. Autism acceptance means you are happy to see me.
For the 22,000 individuals with autism spectrum disorders that my colleagues and I at the UCF Center for Autism and Related Disabilities (CARD) work to support, autism acceptance is the goal.
I say this as an outsider — an “allistic” or “neurotypical” to people on the spectrum. I am just a helper. I have no ASD diagnosis or direct experience to draw from, so I am sure there will be some who say I have no right to comment on this. But those of us who work with and for people with ASD every day agree we need more than awareness.
What that looks like depends on who you talk to. Autism occurs along a spectrum, with features that affect social communication, interests and behaviors, and sensory processing in different ways in different people. The community is diverse, even within itself.
Some individuals are proud and “out” and others are not willing to share their diagnosis for fear of stereotyping that may restrict their opportunities. Some wear blue to promote awareness, and others wear red for autistic pride. Some love the puzzle symbol, and others feel that it promotes a view that they are incomplete or missing something. Some prefer the person-first language that we as professional helpers have been taught to use for years — others prefer identity first.
We need to speak to many individuals with ASD to inform our actions toward acceptance, but here are some tips that should help.
We need to speak to many individuals with ASD to inform our actions toward acceptance, but here are some tips that should help.
If we are to have acceptance, we must say the word.
Recent trends toward using more generic terms like “sensory-friendly” and “neurodiverse” instead of using autism perpetuate the stigma that autism is something to be hidden. So let’s say it proud and loud! It’s fine that others benefit from the work the autism community has done to change opportunities for people on the spectrum, but let’s not let autism get lost in the mix.
Become part of the autism-friendly movement. What does that mean? Do a self-assessment to see what you have in place to welcome people with ASD into your life — be it in your business, neighborhood or among your family members — and then seek out consultation and training in best practices to support people with ASD.
In our work at CARD, we help organizations, businesses and communities create atmospheres that are autism-friendly. Sometimes there are environmental steps that improve the experience for people with ASD, and sometimes there are interaction supports that can be learned. These let families of children with ASD and adults with ASD know that they don’t have to hold their breath or worry about being judged when they go places.
We see this when an autistic member of the faith congregation bellows out a few noises at top volume during the service, and the leader smiles and thanks him for his participation, or when a Universal Studios employee comforts a child having a meltdown because the Spider-Man ride broke down. Recognize the parent at a grocery store standing over a child who is covering his ears and screaming may be dealing with a difficult moment for a child with ASD. Instead of looking away or giving an unforgiving stare, ask if there is anything you can do to help, or even just give a reassuring smile.
A child with ASD may not talk, but that does not mean they don’t think or feel or communicate. Acceptance means celebrating their strengths instead of focusing on challenges. Make sure that classmates with ASD are included in birthday parties. Use books like Crow Boy by Taro Yashima to teach the value in unique abilities.
They may not ace that interview. They may have some quirky traits. But give them a chance to shine. They often have a keen eye for detail and excel at following routines. They are reliable and loyal. Over the years, we have helped connect over a dozen adults with employment in our communities. Some employers who were initially skeptical have become huge champions for hiring people with ASD. The current statistics of one in 36 children means one in 36 will grow up into our workforce, and they need jobs. Reach out to CARD if you are ready to hire — we just may have someone we know who meets your needs.
Autism is not a disease, and therefore it doesn’t need to be cured or eliminated. While many parents and some people on the spectrum wish they could eliminate certain traits or tendencies, or quickly develop skills to help fit into the typical mold, trying to fit square pegs into round holes only damages the pegs. ASD is a complex, neurologically-based difference in how someone sees the world, and it can be stressful to the individual as well as those around him or her.
There are things that can be done to help a person with ASD thrive. At UCF CARD, we provide nearly 750 parent education seminars, social groups, support groups and outings each year. We collaborate with entertainment venues, employers, schools, after-school enrichment programs and sports leagues to foster community inclusion. We provide support that ranges from helping design potty training plans and providing sensitivity building sessions that prevent bullying and help children understand what ASD is, all the way to linking employers to adults with ASD seeking employment and promoting adulting skills.
Help us help our children and adults with ASD by demonstrating acceptance in every way you can.
Our community will be a better place for it.
Terri Daly has served as the director of the UCF Center for Autism and Related Disabilities since 1998. She has more than 25 years of experience serving individuals with autism spectrum disorders and presents locally, nationally and internationally on topics related to ASD, incidental teaching and early intervention in ASD.
