Don't trust TikTok for trustworthy info on autism

TikTok may be great for watching funny cat videos and learning make-up hacks, but new research suggests this platform should not be trusted when it comes to information on autism.

"The majority of the information was either blatantly false or overgeneralized," said study author Elisabeth Sheridan, director of the clinical core at the A.J. Drexel Autism Institute and an associate professor at Drexel University in Philadelphia.

"TikTok can bias understanding about autism by either providing misinformation, such as claiming that a certain product cures autism, or by overgeneralizing individual experiences to the entire autism spectrum," Sheridan explained.

Autism is a developmental disorder marked by a range of difficulties with communication and social interaction. In the United States, it affects about 1 child in 36, according to the U.S. Centers for Disease Control and Prevention.

For the study, researchers rated the top 133 TikTok videos with the #Autism hashtag as of July 29, 2022. They focused on videos that claimed to provide educational information on autism, such as what causes it or how to identify it. These videos had a far reach, garnering 198.7 million views and 25.2 million "likes" in total.

The videos were rated as "accurate," "inaccurate" or "overgeneralized" based on how the information aligned with current evidence on autism. Statements like "medical marijuana can cure autism" would be rated as inaccurate. By contrast, statements such as "medical marijuana has the potential to be beneficial for some individuals on the autism spectrum," would be rated as accurate.

Meanwhile, an overgeneralization code would be applied for a statement like "children on the autism spectrum don't want to be hugged," but not for "some children on the autism spectrum don't want to be hugged." This study did not include videos about people's personal experiences with autism.

About 27% of the videos were classified as accurate, while 41% were classified as inaccurate and 32% as overgeneralized, according to the report. Overall, videos created by health care professionals were more likely to offer accurate autism information.

Engagement with the TikTok videos including likes was the same for all videos regardless of whether they were accurate, inaccurate or overgeneralized.

"Accurate information and misleading information coexist on TikTok with similar levels of authority," Sheridan noted.

TikTok recently added a message to the #autism search that reminds users that TikTok is not a substitute for medical advice. "This is an important message to remind children and adolescents who are engaging with the platform," she said.

The new study was published recently in the Journal of Autism and Developmental Disorders.

Autism advocates not involved in the research urged caution when considering advice or information dispensed on TikTok and other social media channels.

"While TikTok has made information on a range of topics more accessible to people around the world, and has even played a role in raising awareness of autism, this resource also has the potential to spread misinformation," said Eileen Lamb. She is the director of social media and social influencer marketing at Autism Speaks and the mom of three children, two of whom have autism.

Examples of harmful information that has been spread on TikTok include claims from self-advocates that profound autism, which refers to those with autism who require help with tasks of daily living and are often nonverbal, isn't real and claims that everyone is equally autistic, Lamb said.

"I can firmly contest this as an autistic person and a mother to two autistic children with drastically different levels of needs," she said.

As part of her job, Lamb regularly monitors posts to stay updated on autism news and to correct misinformation.

"I always reinforce the importance of cross-referencing social media content with information from credible sources such as professionals, the CDC and Autism Speaks' website or Autism Response Team," Lamb said. (Autism Speaks' Autism Response Team members are trained to connect people with autism, their families and caregivers to information, tools and resources.)

There are inherent risks in taking TikTok videos about autism as factual, agreed Alycia Halladay, chief science officer for the Autism Science Foundation in New York City.

"If you watch a TikTok video that recommends a specific treatment—such as raw camel's milk—that is untested, or a support or intervention that is not appropriate whatsoever, it can be dangerous," she said.

Overgeneralizing autism is also misleading as autism is a spectrum disorder, with severity varying widely, Halladay added.

"TikTok is a fun platform and people are welcome to share their own experiences with autism on it, but that is where it should end," she stressed.

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