World Autism Awareness Day 2021: What you need to know

In many ways, Kevin "Knox" Johnson III is just like most 8-year-olds.The kid enjoys building marble runs. He's obsessed with knock-knock jokes. In sch...

Posted: Apr 2, 2021 11:02 AM

In many ways, Kevin "Knox" Johnson III is just like most 8-year-olds.

The kid enjoys building marble runs. He's obsessed with knock-knock jokes. In school, he excels at math and learning languages. He also loves to sing along to musicals, and he dreams about sharing with the world the beats he makes in GarageBand.

But the Baltimore boy is different from other kids in one major way: He is autistic, and his mother said he embraces that as a superpower.

"My son is joyful and whimsical and always fun to be around," said Jennifer White-Johnson, Knox's mom. "From the very beginning of his life, I have worked to make sure I am giving him the tools to be confident in his identity and comfortable with his unique skills, his differences and the beauty of the person he is."

While the Johnson family celebrates autism every day, the party is particularly meaningful on April 2, annual World Autism Awareness Day. This is an event that encourages awareness about the existence of autism and the roughly 4 million autistic individuals around the world.

For some members of the autism community, the day also kicks off a month-long campaign toward greater acceptance and appreciation of autism. On Facebook, Twitter and Instagram, parents like White-Johnson will spend the next four weeks sharing insights about their autistic children to help outsiders understand more about autism.

Many advocates see the annual event as an opportunity to act on behalf of autistic individuals and lobby for more services, equal treatment and an individualized approach to just about everything.

"No matter how you choose to look at it, autism is a part of the human fabric," said Steve Silberman, author of "Neurotribes: The Legacy of Autism and the Future of Neurodiversity." "Some of the things we know now that we didn't know 10 years ago is just how prevalent it really is, and that autistic people are more like neurotypical people than anybody has thought for decades."

What is autism?

Autism affects an estimated 1 in 54 children annually, according to 2020 data released by the US Centers for Disease Prevention and Control. This number represents a 10% increase over 2014, when the estimate was 1 in 59.

Generally, it is seen as a different way of thinking.

If we picture people as computers, autistic individuals have one-of-a-kind operating systems that enable them to process life and experience the world differently from the rest of the human population.

Researchers know relatively little about the condition that is considered the fastest-growing developmental disability. They know on average that autistic brains are larger and that they "prune," or shed, excess neurons more slowly than neurotypical brains.

Scientists also have identified that autism affects linkages between the parts of the brain that govern emotions, sensory input and executive functioning.

Multiple studies have proven there is no link between vaccines and autism, a misconception propagated by a small but vocal group of skeptics.

Additional research has shown that autistic individuals are less able to pick up on some of the socially rich features of an environment and incorporate them into a broader understanding of the world.

Experts simply don't know why.

Stephen Shore, clinical assistant professor at Adelphi University in Garden City, New York, described autism as a mystery and a puzzle, and noted that one of the biggest challenges in understanding the condition is that it presents differently in every patient.

"When you've met one autistic person, you've met one autistic person; that experience tells you nothing about autism as a whole," said Shore, who is autistic. "We need to be aware of, accept, and appreciate the incredible diversity that we find within the autism spectrum. What that suggests is that we need to get to know autistic people as individuals as opposed to a collection of characteristics."

The latest autism research

Research into autism is ongoing.

One March 2021 paper indicated the prevalence of autism in England is much higher than scientists there originally thought.

Another study co-authored by Kevin Pelphrey, the Harrison-Wood Jefferson Scholars Foundation Professor of Neurology at the University of Virginia Brain Institute in Charlottesville, suggested that autism may be fundamentally different in girls and boys.

As of press time this paper was set to be published in a forthcoming issue of the journal Brain.

Pelphrey's work is the latest in a series of recent investigations into a fascinating -- and perplexing -- statistic: Boys are four times as likely as girls to be diagnosed with autism.

While some of this discrepancy can be attributed to clinical bias (historically boys have comprised the bulk of research subjects), Pelphrey suggested that further investigation may reveal two different kinds of autism caused by two different underlying mechanisms in the brain—a dichotomy that might in some cases lead to misdiagnoses of other mental health issues.

While researchers continue to examine tough questions, autism certainly is becoming more mainstream. Whether it's activist Greta Thunberg, singer Susan Boyle or scientist Temple Grandin, mainstream society recently has embraced autistic people and celebrated some of the qualities that make them special.

The creative world is following suit -- with books such as Naoki Higashida's "The Reason I Jump: The Inner Voice of a 13-Year-Old Boy with Autism;" films such as "Loop," a short from Pixar about a Black autistic woman; and television programs such as the new "On the Spectrum" series from HBO Max (which, like CNN, is owned by AT&T, the parent company of WarnerMedia), the entertainment industry is actively working to debunk the stigma that people once associated with autism.

Acceptance may be the horizon

This trend toward greater acceptance of autism appears to be catching hold in the corporate world.

Across the country, companies are embracing people with different brains the same way they have welcomed those with varied genders, ethnic backgrounds or religious affiliations. The buzzword for these efforts is neurodiversity.

These efforts are important; the Autism Society estimates about 83% of autistic college graduates are unemployed, compared to the national unemployment rate of 6.2%.

Over the last five years, companies such as Microsoft, SAP, Ford, EY and Albertsons all have launched programs in this area, investing serious resources to hire autistic individuals and make them feel like part of the team.

Smaller companies are getting in on the action, too.

Argo AI, a self-driving technology company in Pittsburgh, Pennsylvania, has worked with a local nonprofit to vet and hire autistic individuals, and seeks to raise awareness of neurodiversity among current employees.

During a recent all-hands company meeting, autistic programmer Christopher Pitstick delivered a 30-minute presentation about his life experience, sharing personal stories about what he thinks during awkward social interactions, and how he attacks a complicated coding project by breaking it into small pieces.

"The reception of the All-Hands talk encompassed volumes of flattering and supportive notes from colleagues throughout the company, and I continue to receive them even some time later," he wrote in a recent essay on the subject.

Elsewhere, technology companies are devising new products aimed at helping non-speaking autistic individuals who have fallen behind on social and emotional skills to communicate better.

At Cambridge, Massachusetts startup Brain Power, for instance, researchers have created special virtual reality smart glasses designed to help non-speaking autistic children leverage role-play and practice getting through potentially stressful social situations, such as meeting new people.

As many as 40 % of autistic people can be non-speaking.

"Technology can enhance and support interventions that may already be happening," said Dr. Arshya Vahabzadeh, a child psychiatrist who doubles as the company's chief medical officer. "Sometimes these types of augmentative tools can greatly improve an autistic individual's comfort level in a particular situation."

How to make a difference

One easy way to make a difference in this community is to focus on things people with autism do well and acknowledge those skills as unique.

Another option: be more mindful of unintentional ablism; dismissing eccentric people as "spectrumy" or simply "on the spectrum" can be hurtful to autistic people and their families.

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"Preconception is the enemy," said Matt Asner, president and CEO of The Ed Asner Family Center, an autism services organization in Reseda, California.

"Especially when we meet an autistic person, we should understand that they are different, and remember that they think differently. That's what makes them unique and original and beautiful. It's what makes them who they are."

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