Four Important Things to Know About Autism

You may have heard of April as “Autism Awareness Month,” but there’s a growing movement to push for legislation that designates April as Autism Acceptance Month. It’s an important shift, says Christopher Banks, President and CEO of The Autism Society of America. While awareness is still critical, he says—especially as autism is an “invisible” disability—acceptance takes a very necessary next step. Because acceptance leads to inclusion, which then leads to belonging. If you don’t know much about autism, this month is the perfect time to learn more about it, and about how to be an ally to autistic people and their families. Here’s a place to start.

Autism is a developmental disability

It’s something a person is born with, and impacts social and communication skills and behavior. For example, an autistic child might have delayed speech, unusual movement patterns, or avoid eye contact. They might have differences in sensory processing, and they may use self-stimulating, repetitive behaviors like arm flapping or rocking their body as a way to soothe themselves or focus. About 1 in 54 kids have an autism spectrum disorder, and autism shows up in all races, ethnic groups, socioeconomic levels, and genders.

Autism is a spectrum of disorders

From a diagnosis standpoint, this means that some conditions that used to be diagnosed separately from autism, like Asperger syndrome and pervasive developmental disorder not otherwise specified (PDD-NOS) are now all under the umbrella of autism spectrum disorder.

In practical terms, however, experts and advocates say that the spectrum means that the range of experiences of autism is wide, varied, and vast. It means “that every autistic person is different. We all like and dislike different things, and we all need help with different things,” according to materials from the Autism Self Advocacy Network (ASAN). “There is no such thing as being ‘more’ or ‘less’ autistic. We are all just autistic.”

Self advocates like those involved with ASAN argue against language that categorizes autistic people as “high functioning” or “low functioning” because it isn’t helpful to people with autism, and is judgemental about their needs. Instead, they encourage talking about individual support needs.

When people talk about neurodiversity, they’re talking about the differences in the mind and thinking of an autistic person, compared to someone who is more “neurotypical,” explains Banks. It’s not a judgement—a statement about being better or worse—but a recognition of differences. As ASAN writes, “the neurodiversity movement says it is okay to be disabled, and it is okay if your brain is different from other people’s.”

Every person with autism is different

As Banks says, quoting author and advocate Dr. Stephen Shore, “if you’ve met one person with autism, you’ve met one person with autism.” Each child or adult with autism has their own unique strengths and challenges.

And while you might see representations in pop culture or media about autistic people who can rattle off every stat for a sports team, the belief that all people with autism are like that is a misconception, says Arianna Esposito, director of lifespan services at Autism Speaks. Similarly, while some autistic people may have restricted or special interests, that doesn’t apply to everybody.

And while autism is diagnosed more than four times more often in boys than in girls, the idea that it’s a white male disorder is another big myth about autism, says Alicia Trautwein, an autistic mom of three kids with autism, and founder of The Mom Kind. People may have a preconceived notion of what autism looks like, but “there is no appearance to autism. It comes in every race, ethnicity, and gender,” she says.

Another misconception is that all individuals with autism don’t like bright lights and loud noises, says Banks. While some may have sensory differences, the experience is different for everyone. He also notes that another big myth is that just because a person has different ways of conversing, that they can’t hold a job.

How to be more supportive, accepting, and inclusive

When it comes to kids being accepting of each other, it all comes down to kindness. “The biggest thing is just teaching your children in general not to be a bully, and to be kind to everyone no matter their differences” says Trautwein. She advises telling your kids that if they have a question (Why do you jump? Why do you tap your pen all the time?) that it’s okay to ask it respectfully—but that it’s also okay if the person doesn’t answer their question.

Similarly, if you’re buying a toy or a gift for an autistic child, and want to know what they’re into—just ask, says Trautwein. (And, she notes, some autistic kids may not like surprises… in which case you can skip the gift wrap.) Since children with autism may have very strong interests, it’s helpful to know what those are, as well as their sensory preferences. Finding out what skills they’re working on may be helpful too; for example, a child struggling with fine motor skills and hand strength might benefit from playing with playdough, says Esposito.

Adults and children alike can be allies to autistic people. ASAN’s suggestions for allyship include learning about autism from autistic people, respecting their privacy and communication styles, and not assuming things about autism. "Presuming competence is key, and working to support whatever form of communication a given non-speaker uses is a human right,” says Noor Pervez, Community Engagement Coordinator at ASAN. Allyship also includes talking about autism respectfully, and honoring people’s preferences with how they want to be identified. Some people prefer identity-first language (i.e. “autistic person”), while others prefer person-first language (“person with autism”). One isn’t right and the other wrong; the important part is to listen to individuals.

The Covid-19 pandemic has been an isolating time for all of us, but especially for people on the spectrum and their family members, notes Esposito. “Change can be really difficult for some children with autism,” she says, noting that simply checking in on friends and neighbors can go a long way. As we all get ready to re-enter the world, it’s as good a time as any to make sure our communities are as welcoming and inclusive as possible.

Banks uses a softball analogy to explain what it means to create a truly inclusive community. For example, he says, let’s say you know that Janie has a disability, and you find out that it’s autism. You educate yourself about what that is. That’s awareness. Then you figure out what you can do to provide programs, support, and services so she can join the girls softball team. That is acceptance. And then you don’t stick her in right field just so she can feel like she’s part of the team, even though no balls ever go there. You put her at second base so she’s really in the game, a part of the action. That’s inclusion.