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TikTok Helps Illustrate the Individuality of Autism

actually autistic tiktok

TikTok

Key Takeaways

  • Autism spectrum disorder is a condition involving social, motor, and communication impairments. It presents in different ways and the severity of behaviors varies with each person.
  • Autistic people are sharing examples of their own specific behaviors and experiences on TikTok.
  • Just as autism is a highly individualized disorder, any treatment should be highly individualized as well.

There isn’t a single definition for autism. It’s an umbrella term encompassing a broad spectrum of people. Yet TV and other pop culture media tend to rely on autistic stereotypes, creating inaccurate portrayals for autism spectrum disorder—from the genius Sheldon in "The Big Bang Theory" and the autistic savant portrayed by Dr. Shaun Murphy in "The Good Doctor" to Sia’s inaccurate and neurotypical view of autism in her movie "Music."

Who are the best people to represent what autism can look like? Autistic people themselves. This Autism Awareness Month, autistic TikTok users are uploading videos using hashtags such as #autismawareness and #actuallyautistic to talk about their personal experiences with autism.

A common theme highlighted across all videos is that autism is an individualized experience. There's no certain way an autistic person should look, act, or cope.

Verywell spoke with Ronald Leaf, PhD, the co-founder and director of Autism Partnership Foundation, to learn about what makes autism unique and the need to individualize treatments.

Individuality on the Spectrum

Autism manifests in different ways. Autistic people may or may not have trouble communicating and understanding social situations. Leaf says this can range from being nonverbal to demonstrating oddities in language or talking only about specific topics. Some people may display "deficits" in social communication or interaction, and some people may be able to camouflage this.

The behavioral diagnostic criteria of autism mainly involve restricted behaviors and repetition, but this can also vary greatly. Examples of repetitive body movements include:

  • Rocking back and forth
  • Flapping hands
  • Placing objects in specific orders

Leaf emphasizes people can have autistic traits without being autistic.

“The way I've always looked at autism, it's somewhat an exaggeration, or extreme exaggeration, of normal childhood development," he says. "But it's the severity of it that makes it different."

What This Means For You

About 1 in 54 children are diagnosed with autism. Autism manifests differently for every person. Because of the disorder's uniqueness, it’s crucial for providers to treat every autistic person as an individual.

Parents and professionals may have a hard time understanding autism because of the amount of misinformation surrounding it—and that trickles down to the people most affected. The false link of vaccines causing autism is a classic example of how autism is portrayed as an unfortunate accident rather than an extension of a person’s identity.

Every person’s autistic identity is different. Leaf compares autistic people to snowflakes: no two are the same.

While autism research has come a long way from scientists first mistaking it for a childhood version of schizophrenia, progress in the field still has a long way to go. Leaf says every part of the autism experience, from education to treatment, needs to be individualized. But many teachers, caregivers, and even doctors fall back on cookie cutter therapies, or aren't equipped to recognize or accommodate autism at all.

The Need for Individualizing Autism Treatment

Leaf says the gold standard for autism treatment in the U.S. has been applied behavior analysis (ABA), but this is an outdated method that requires more training.

“Most people [who practice] ABA get maybe one or two weeks of training, and this is not sufficient," he says. "Autism is complex; you would never want to get an operation with a surgeon that gets one or two weeks [of training]. And you'd want the trainee to be performance-based. You wouldn't want a paper-and-pencil test.”

Leaf says the acknowledgement that autism is a spectrum has been a step in the right direction. But further individualizing treatment is the next step.

“Every part of treatment has to be individualized, [accounting for] a patient's strengths and deficits," Leaf says. "You're going to be addressing their motivation, their learning behavior, where they learn—and it all has to be factored into the treatment."

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Article Sources
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  1. Centers for Disease Control and Prevention. Autism spectrum disorder (ASD): diagnostic criteria. Updated June 29, 2020.

  2. Centers for Disease Control & Prevention. Data & statistics on autism spectrum disorder. Updated September 25, 2020.