Psychologist Laura Carpenter, Ph.D., hears a lot of talk about people diagnosing themselves with autism online. “In the professional groups I’m a part of, it seems like it’s the main topic of discussion,” the MUSC Children’s Health autism specialist said.
That’s because the subject of autism self-diagnosis is so prevalent on social media. “There’s a lot of misinformation going around on Reels and on TikTok,” Carpenter said. Reels are short videos on social media.
A recent study in the Journal of Social Media Research backed that up, reporting “concerning findings” about the accuracy of neurodivergence information on social media. Other research in the Journal of Autism and Developmental Disorders found that social media posts citing incorrect causes of autism, conspiracy theories and stigma were problems as well.
Why it’s happening
Carpenter said there are good reasons why people are turning to social media for information about autism.
First, there are adults who were never diagnosed but should have been. Some go online for information. “There’s this segment of people who were missed. They obviously have autism. We weren’t as aware of it 25 years ago. So here we are. This person is 30 years old, and if they had been 5 years old now instead of 25 years ago, we would have easily picked up autism.”
Second, it can be tough for adults who suspect they’re on the spectrum to find a medical professional who can help. “I think a lot of people probably would love to go get a professional diagnosis and can’t. They literally can’t find someone who is qualified to do it, and particularly someone who will accept insurance.”
Third, online screening tests can be helpful. “They’re supposed to help somebody figure out if further assessment is needed. But a positive result on an online test doesn’t mean a person has autism. They need to see a specialist for a formal evaluation.”
Reservations
That’s why Carpenter has some reservations about autism self-diagnosis.
For one thing, people may base their assessments on misconceptions about autism. For example, some videos wrongly suggest that certain quirks are signs of autism when experts say they’re really just preferences. And there is no specific test to diagnose autism, despite what the presence of online tests may suggest. Instead, autism can only be diagnosed by a health care professional, according to the nonprofit awareness and research organization Autism Speaks.
Another worry Carpenter has is that self-diagnosis can convince people so firmly that they have autism that they’re unwilling to consider the idea that they have other treatable conditions.
“I do think there are people who have other psychiatric conditions that are probably better explanations for their distress, like post-traumatic stress disorder or social anxiety.”
She’s glad that some people find meaning and belonging in the autistic community but worries about the risk of misdiagnosis. “But are we missing treatment for really significant treatable issues? Are you actually going to feel better with this diagnosis?” Carpenter said.
While many more people are diagnosed with autism spectrum disorder than in the past, the percentages are still fairly low. According to Autism Speaks, 1 in 31 children has autism (3.2%) and 1 in 45 adults (2.2%).
Going forward
Carpenter said the fact that so many people are talking about autism on social media serves as a reminder of how important it is to try to make professional services available. With that in mind, she’s working on plans for a Center of Excellence in Autism and Neurodevelopmental Disabilities at the Medical University of South Carolina, where she’s a professor.
“I’m the co-leader for that. And I am absolutely dedicated to making sure that it takes a lifespan approach. I really want to see us have full-diagnostic family support and treatment capacity for toddlers all the way through adulthood. This is also where we’re teaching the next generation of psychologists, psychiatrists and developmental behavioral pediatricians. Having that center to help will improve the quality of care in the community.”
She’s also conducting extensive research on autism, looking at things like improving the accuracy of screening, helping parents via telehealth and examining the role of genetics in autism.
And Carpenter said it’s important to get people diagnosed at any age because it can give them access to help.
“One of the things that makes me nervous is when folks end up with the wrong diagnosis or never make it to a professional. They may be saying, ‘Wow, autism really seems to explain a lot of what’s going on with me. I’m just going to roll with it.’ But without a professional diagnosis, they may not be able to get the treatments that they need.”
Those treatments can make their lives a little easier, Carpenter said. “For some people, it’s learning skills like learning how to read other people better and developing meaningful relationships. But the other part of it is just really learning to advocate for yourself and your needs at school, in relationships or in a workplace.”
A lot of treatment involves teaching people to be aware of their areas of need, Carpenter said. “So that’s about changing the environment to be more supportive, which can be wonderful if that’s the right approach. But if we’re missing some sort of significant psychiatric problem, potentially not so wonderful.”