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TikTok Videos on Autism Largely Inaccurate

Drexel study points to danger of relying on social media for autism information.

Key points

  • A new study reports that less than 30% of autism information on TikTok is reliable.
  • Harms include the medicalization of typical behavior and the reduction of services to the profoundly autistic.
  • The entire autism community needs to unite against pervasive misinformation on social media.

Drexel University researchers Diego Aragon-Guevara, Grace Castle, Elisabeth Sheridan and Giacomo Vivanti published a study this week in the Journal of Autism and Developmental Disorders that examined the most popular informational videos on autism on TikTok and found that only 27% contained accurate content. Thirty-two percent were “over-generalized” (meaning that they generalized the experience of some autistic people to the entire spectrum), and over 40% were flat-out inaccurate.

In case your immediate reaction to this paper is skepticism that anyone really turns to TikTok for autism information, the researchers reported that the over-generalized and inaccurate videos had been viewed almost 150,000,000 times.

The Dangers of Misinformation

All this false information has significant material harms. The authors caution that such videos have “the potential to pose barriers to trust, communication and shared decision-making between professionals and autistic individuals and their families.” Furthermore, they “can bias the general public’s views on autism…underrepresentation of content related to individuals requiring more intensive services and supports can lead to less awareness on their experience, which can affect advocacy efforts and service provision for those individuals and their families.”

Naturally, as the mother of a 24-year-old, profoundly autistic son, I put a big star next to that last quote. But the harms of autism misinformation don’t just accrue to Jonah and his peers. A cursory TikTok search of “you might be autistic if you…” found videos that cast extraordinarily common feelings — such as “hav[ing] a strong sense of social justice,” “hav[ing] ideas that you think are genius but nobody else seems to think they’re genius” and “often feel[ing] confused and overwhelmed” — as autistic symptoms. When you combine these claims with the embrace of self-diagnosis by neurodiversity advocates like the Autistic Self-Advocacy Network (ASAN), you potentially get the medicalization of an entire generation. What teenager or young adult doesn’t frequently feel “confused and overwhelmed”? Heck, I feel overwhelmed pretty much 100% of the time.

The Importance of Medical Expertise

Unsurprisingly, the Drexel researchers discovered that videos made by healthcare professionals were more accurate than those made by other content creators — a finding that emphasizes the ongoing importance of medical expertise in the diagnosis and treatment of autism, despite ASAN’s scary depiction of doctors who “have the wrong ideas about autism” or who do “not want to give someone a diagnosis.”

The authors conclude that the research community needs to have greater awareness of inaccurate TikTok autism discourse “to facilitate communication with individuals and families impacted by autism.” But I would argue that all stakeholders in the autism community need to take the results of this research very seriously. Until TikTok commits to removing autism misinformation the way it does with other topics like abortion or vaccines, pervasive misinformation will represent a tremendous problem for the entire community. Young people need to be made aware that more than 70% of the autism information they are getting from TikTok is unreliable, and their parents, doctors, teachers and counselors need to be prepared with accurate information to support children, patients, and students who become convinced that they are autistic because, for example, they “listen to the same song on loop.”

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