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Misinformation on social media platforms like TikTok is leading a growing number of people to inaccurately diagnose themselves with autism spectrum disorder. Mihajlo Ckovric/Stocksy United
  • Social media platforms like TikTok are encouraging self-diagnosis and misinformation of autism spectrum disorder (ASD).
  • Experts share the dangers of self-diagnosing mental health conditions.
  • Reliable online resources offer a reputable alternative to misinformation.

In the era of TikTok, self-diagnosis of mental health and developmental conditions, including autism spectrum disorder (ASD), is on the rise among young people.

Some posts include people sharing reasons they believe their self-diagnosis is valid, while others contain mental health professionals stressing the importance of getting diagnosed by a provider.

“Self-diagnosis has always been a risky pursuit. Social media has only increased the potential dangers of self-diagnosis,” Joseph O’Brien, LCSW, manager of the Behavioral Wellness Center at Inspira Health, told Healthline.

Misinformation spreading across social media enhances the dangers. In fact, only 27% of the most popular autism-related TikTok videos contained accurate information, according to a study from Drexel University’s A.J. Drexel Autism Institute.

The study also revealed that 32% of videos were overly generalized, while over 41% were completely inaccurate.

Researchers looked at the dangers by analyzing engagement indicators, including views and likes for TikTok videos associated with the “Autism” hashtag.

The content of the most viewed videos were fact-checked, with a focus on those that provided information on autism as a condition, such as what causes it or how to identify it. Then the videos were marked as either accurate, inaccurate, or ‘overgeneralization’ based on the consistency of the information in the videos with current reputable knowledge on autism.

The same study reported that misleading and inaccurate videos had been viewed almost 150 million times.

While more attention on ASD can bring about advocacy and understanding of the condition, as well as greater acceptance of individual differences, Diane Franz, PhD, a pediatric psychologist at Children’s Hospital New Orleans, said misleading information online and across social media is harmful.

“The tendency to look for a diagnosis to explain any variations in personality and behavior takes away from accepting normal variety among children and adults, and minimizes the significance of living with a significant disorder that impacts many aspects of the person’s life,” she told Healthline.

Experts share the following concerns about misinformation regarding ASD.

Encourages inaccurate self-diagnosis

Utilization of standardized assessments administered by professionals maintains the integrity of the diagnostic system, and ensures that correct individuals are identified, said Franz.

“The risks of self-diagnosis are essentially that it is likely to be inaccurate, which will not allow the individual to be eligible for services needed to support them in all aspects of their lives,” she said.

O’Brien added that diagnosing ASD is not done instantaneously but, rather, over time as the therapist gathers information and becomes familiar with their clients.

“Diagnosing is ultimately up to the therapist’s discretion but is best made as part of a conversation between therapist and client,” he said. “The situation is often made more complicated when the self-diagnoses are at odds with the observations of the therapist.”

People can become attached to misinformation

Given the current use of algorithms by social media platforms, O’Brien said people might be exposed to a steady flow of the same misinformation, deepening their attachment to the information or diagnosis.

“This makes navigating the diagnosis conversation for the therapist a very difficult task that can result in a power struggle between the training and experience of the therapist and the social media exposure of the client,” he said.

He added that is especially true for ASD, mood disorders, borderline and narcissistic personality disorders, and cannabis use disorder.

Weakens official language used by mental health professionals

The Diagnostic and Statistical Manual of Mental Disorders (DSM-5) is the handbook used by healthcare professionals as the authoritative guide for diagnosing mental health disorders.

“Even if one takes the DSM-5 with a grain of salt, having a shared language with very specific meanings to allow providers to communicate with each other and their clients is of the utmost importance,” said O’Brien.

The trend of self-diagnosis on social media has “watered down” the common understanding of diagnoses, especially ASD, and shifted the meaning of the diagnosis, he added.

“When working with adolescents, it is now very common for them to attend an intake session convinced that they have bipolar disorder, autism spectrum disorder, and are being ‘gaslit’ by their narcissistic parents,” said O’Brien. “Almost always, they are using these terms in ways that therapists are not using them.”

Downplays the significance of an ASD diagnosis

The intensity and frequency of exposure to misinformation on social media is powerful and makes O’Brien’s clients resistant to education. He said it also creates difficulty for the visibility of, and advocacy for, certain populations like people living with ASD.

“Self-diagnosing challenges professionally made diagnoses and might serve to disenfranchise those members of these groups who have diagnoses from professionals,” he said.

Additionally, if ‘everyone’ identifies as having ASD, then the diagnosis loses its meaning for the community of people who have worked to obtain visibility and accommodations.

“Furthermore, if the condition is treated as so widespread that it becomes statistically ‘normal,’ then the very need for accommodations will be undermined,” said O’Brien.

In addition to the inaccurate information on social media and online, there are a plethora of reliable sources of information on mental health conditions.

“Social media, in and of itself, is not the enemy,” said O’Brien. “The real threat seems to be our unquestioning, naïve relationship to social media and our belief that diagnoses can be self-made without consulting a professional.”

Franz suggests organizations like the American Academy of Pediatrics as a resource for information on ASD and to find providers and autism services in your area.

“They should also consult with their pediatrician, who is trained to screen and be the first line professional to detect concerns for autism spectrum disorder,” she said. “For older individuals, consultation with either a medical professional or psychological professional is a good place to start.”