Disability Misinformation in Social Media
A recent study showed that social media isn’t the best place to get information on mental health and neurodiversity.
That probably doesn’t surprise you. But thanks to the Journal of Social Media Research’s review of over 5,000 posts across YouTube, TikTok, Facebook, Instagram, and X, we’re now able to quantify the amount of misinformation out there (https://jsomer.org/index.php/pub/article/view/84). Most platforms had some level of misinformation, and the accuracy of information on autism and ADHD was the most suspect.
The worst platform for accuracy was TikTok, where researchers found that 41% of autism-specific content contained misinformation. Overall, YouTube videos were more accurate than TikTok videos. Facebook had the lowest misinformation of all platforms other than YouTube kids, whose strict moderation and focus on child-appropriate content weeds out many inaccurate posts. Content created by professionals was more reliable in general, and professionals on YouTube were more reliable than on Instagram.
There are risks both in ignoring this evidence and giving it too much credence. With professional researchers setting the standard for what is accurate and reliable, it follows that professionals in similar fields would align more closely with those standards. Scientific evidence does evolve over time, with our understanding of what is accurate shifting along with it.
The rampant misinformation is far more damaging. Misinformation and inaccuracies can reinforce stigma against people with disabilities. Treatments that are not evidence-based can be dangerous and can delay or replace treatments that have demonstrated effectiveness. Amateur diagnostic tools can result in inaccurate self-diagnosis, undue anxiety, and incorrect treatments.
The suggested alternative is to seek assessment, diagnosis and treatment from a trained professional. However, not everyone has the means to get an official diagnosis. Assessments are not available in all communities, they can be expensive, and often assessments are inconclusive and leave a person or family without answers.
So, where are we to turn for accurate, reliable, and helpful information around disabilities in general and particularly mental health and neurodiversity?
People with disabilities are generally the best sources of information on how to live with a disability. Videos and posts from peers with tips on things like how to prepare to go into a setting that might be overstimulating can be very helpful to someone learning to navigate their own neurodivergence.
Reputable advocacy organizations such as the Autistic Self-Advocacy Network also tend to stay current on scientific findings and trends and share professional information from the perspective of people with lived experience. They can also lend helpful information on how and where to get professional assessments and medical treatment.
But perhaps the most important thing we can all do is improve our social media literacy and fact-check claims before we act on or spread them. Consider the source of any information, their motivation for sharing, and whether their information is echoed by credible sources and subject matter experts. Avoid making diagnosis or treatment decisions based on social media. And remember that most of these platforms are designed to keep feeding you the same kind of information you’ve already viewed.