What is autism spectrum disorder? How to support the community this Autism Acceptance Month

April marks Autism Acceptance Month with World Autism Day occurring on April 2 every year. The month is meant to be a time for uplifting autistic voices and sharing in the community's joy. But for Samantha Edwards, an autistic content creator and neurodivergent life coach, the month also signifies an influx of harmful myths about autistic people.

"April is a wonderful month to crack down on that and listen to autistic voices and their stories and listen to their struggles," she says. "Acceptance, at the end of the day, is going to promote more inclusivity."

Here’s how you can uplift the neurodivergent community this April and all year long.

A sidewalk chalk drawing celebrates Autism Acceptance Month in April.
A sidewalk chalk drawing celebrates Autism Acceptance Month in April.

​​​What is autism?

Autism is a developmental disability that affects the way people experience the world. This may include differences in processing senses, thinking, physically moving, communicating, socializing and going about daily living.

“We’re born autistic and we’re autistic our whole lives,” says Zoe Gross, the director of advocacy at Autistic Self Advocacy Network. “It affects everything about the way we interact with and perceive the world.”

Autism affects every autistic person differently, and there isn’t one way to be autistic. Gross describes it as an ice cream sundae bar: The traits of autism can be mixed and matched from person to person.

Here’s what autism isn’t, Gross says – something to be scared of or pity.

“In truth, autism is just a neutral fact about us, it’s not necessarily a good or a bad thing,” she says. “It’s just the way our brains are.”

Another misconception is that autistic people don’t have empathy. Gross recalled a time when a teacher asked her if she loved her parents. Of course she loves them, she responded, but the question itself was a symptom of a larger myth about autistic people and emotions.

“Where that comes from is that we may not know what other people are feeling if they don’t tell us because autistic people may not be good at reading body language or other kinds of subtle social cues,” Gross says. “But that doesn’t mean we don’t care what people are feeling.”

World Autism Day: A love letter to parents of a newly-diagnosed child

How common is autism?

About one in 36 children have autism spectrum disorder, the Centers for Disease Control and Prevention states. This number is on the rise, especially as children of color receive more diagnoses after being largely overlooked throughout history.

Edwards started her online autism advocacy journey to combat the misconceptions about autism. As an autistic person and a parent of two autistic children, she says she wants to make the world a more accessible place for future generations.

Samantha Edwards is a content creator and neurodivergent life coach.
Samantha Edwards is a content creator and neurodivergent life coach.

A large part of her work is advocating for the self-diagnosed community, which she says “are very welcome and included in the autistic community.”

One of the more harmful narratives is that people, especially teenagers, are self-diagnosing after watching a handful of TikTok videos with captions like “Signs you may be autistic” or “10 things that are actually traits of autism.” But that’s “really not the case,” says Edwards. Online platforms like TikTok give the autistic community, like other marginalized communities, more visibility than ever before.

“It is harmful for all of these self-diagnosed autistics that really did put in the research – some have years, even a lifetime of research – to be told, ‘Oh, you watched a couple TikTok videos so you’re not valid,'” Edwards says.

Some medical professionals push back against self-diagnosing, especially when it comes to social media. But there’s also the nuanced issue of access to healthcare services that may lead to a professional diagnosis, which can be limited for some autistic individuals.

What is Autism Acceptance Month?

April is Autism Acceptance Month but many, especially those outside of the autism community, used to refer to the month as "Autism Awareness Month." Autistic advocacy organizations have been using “acceptance” rather than “awareness” for over a decade, and the Autism Society of America shifted the terminology in 2021.

According to ASAN, Autism Acceptance Month was created by and for autistic people to respect the rights and humanity of all autistic people and center “the perspectives and needs of autistic people with intellectual disabilities, nonspeaking autistic people, and autistic people with the highest support needs.”

Using “acceptance” instead of “awareness” is an intentional choice because, as Edwards says, “we’re just moving on.”

“It’s 2023, I do believe most people are aware of what autism is,” she says. “We’ve got the awareness and now we need the resources, we need the advocacy.”

Awareness campaigns have historically focused on how many people have autism or a search for a “cure.” A now-removed 2009 campaign from advocacy organization Autism Speaks opened by saying “I am autism. I’m visible in your children, but if I can help it, I am invisible to you until it’s too late.”

The “awareness” approach, Gross says, further stigmatizes autism as something scary.

“That’s not the way we want to approach giving people information about autism, we want people to view autism as a part of human diversity and autistic people as part of their community,” Gross says.

How to support the autistic community

Don’t speak over autistic voices

Nothing about us without us” is a disability rights slogan that’s top of mind during Autism Acceptance Month.

When it comes to research, policy and advocacy, the most important thing is that autistic people are “in the driver’s seat,” Gross says. It means that decisions about autism need to be made by or with autistic people. It also means centering the stories and experiences of autistic people.

Avoid harmful labels and language

“Low-functioning” and “high-functioning” are labels often ascribed to autistic people. These are harmful, ASAN says, because “we all have things we are good at and things we need help with.”

“People will say, ‘How can I do without the terms low-functioning and high-functioning?’ And what I want to ask is like ‘What are you doing with them now?’” Gross says. “What I encourage people to do is just say what they mean. If they mean this person can’t speak, (say) ‘I’m talking about someone who can’t speak.’ If they mean this person has a job, just say ‘I’m talking about an autistic person who has a job.’”

Neurotypical people may also wonder what’s more appropriate to say – person with autism or autistic person?

Many self-advocates prefer identity first language because it works against the stigma that being autistic is something bad or something that makes you less than. Identity first language (“autistic person”) recognizes and validates that identity.

“Autism is something that you are and not something that you have, you’re not carrying autism around in a bag,” Edwards says. “It’s something that makes your brain different.”

But it’s a personal preference. For example, Gross says people with intellectual disabilities may use person-first language ("person with autism") because “they feel they’ve been so dehumanized and people only see their disability and don’t see them.”

The bottom line: How someone refers to their autism is personal based on what makes them feel the most affirmed and validated.

Support autistic-run organizations and businesses

Edwards recommends supporting organizations that center autistic voices and are run by autistic people, like ASAN and the Autistic Women and Nonbinary Network.

This month, Edwards says she’ll be using her platform to uplift other autistic and disabled creators.

“There’s so many of us that are … trying to make a really big difference in this movement, so I’m really proud of everyone this past year,” she says. “I just want to uplift each other and get the right message out.”

Organizations with primarily neurotypical leadership have led autistic advocates to move away from their symbols (like Autism Speaks’ signature blue color and puzzle piece) in favor of new ones created by autistic self-advocates. The first puzzle piece logo in 1963 featured a crying child in the center and was designed to show autism as a “puzzling condition.” A 2018 study found the general public has a negative implicit bias against the imagery of a puzzle piece, which participants associated with “imperfection, incompletion, uncertainty, difficulty, the state of being unsolved, and, most poignantly, being missing.”

“We recognize discord within the community, including those who dislike the puzzle piece symbol or prefer a different symbol, but there are also many who embrace it and want to continue to see it associated with autism,” Autism Speaks told USA TODAY in a statement.

The organization says it is regularly seeking feedback from those within the autistic community on whether or not to continue its use and encouraged feedback at connectwithus@autismspeaks.org.

Many favor a rainbow or gold infinity symbol and use “Red Instead,” which Edwards says symbolizes the passion autistic people have.

Don’t perpetuate myths about autism 

Edwards recommends neurotypical people support the neurodiverse community by staying up to date on current research and taking a second glance before sharing something that furthers stereotypes about autistic people.

“We all deserve our human rights, and we all deserve respect,” Gross says. “We all deserve to be able to make choices in our lives, we deserve to live free from neglect and abuse, we deserve to have services that are truly person-centered and individualized for us and that meet our needs. Those aren’t optional, fancy things that you get by being mildly impacted.”

This article originally appeared on USA TODAY: What is autism? How you can be supportive this Autism Acceptance Month