“DrJoey” promotes a dubious autism self-diagnosis tool on TikTok.
“The ‘autism’ I see in general on TikTok is hardly recognizable to me. The misinformation being shared is becoming increasingly dangerous to the autistics with more profound needs.”
By Cyndi Lambert
I am the mother of a 32 year-old autistic son who requires 24/7 care. In January 2022, I joined TikTok. I was looking for more advice on my son, since he was not doing well after the pandemic shutdowns. I’ve connected with other mothers of autistic children, health care providers with a variety of specializations, autistic adults, AAC users, and others. I have learned a lot through these connections, and have developed some great relationships. However, I am also astounded by the amount of misinformation I have seen on the app.
A recent study from Drexel University, “The Reach and Accuracy of Information on Autism on TikTok,” analyzed the top 133 videos providing informational content on autism. It found that just 27% of the videos offered accurate information, while 41% were classified as inaccurate and 32% as overgeneralized. Why is this? I believe we must consider the factors that contribute to the spread of misinformation about autism.
First is the curation of the users 'For you Page’ (FYP) through TikTok’s algorithm. The algorithm is based largely on the objective to increase “total watch time” of its one billion+ active users. The algorithm doesn’t care if your video is accurate or not, only how many “watch hours'' it gets. Your FYP is a stream of videos TikTok thinks you might like, based on your previous views and interactions. Click “like'' on the video of someone’s pet chickens? More chicken videos will likely appear! Yay! Interested in antique cars? BOOM. Applying the same concept, a “like'' on that video of a person saying “When you thought you were just being quirky for stirring your ice cream into a creamy texture because it tastes better that way but turns out it’s a sign of autism” (yes it’s real and has 1.3 million views), you’re going to get more videos of people discussing their “traits of autism” (such as having “hooded eyelids,” sleeping with your bent wrist under your chin, and rubbing your socked feet together in bed). Many of the “autism traits” that can be found are really just human traits, pathologized. Due to TikTok’s algorithms, the misinformation is amplified and can be more damaging than on other platforms.
Second, the pervasive harassment and bullying of parents and other (often higher-needs) autistic people makes some people afraid of making content or comments. Many parents are fearful of posting about their journey with their child. Based on my own experience, it’s truly not for the faint of heart. The most common avenues for bullying are: (1) videos outwardly condemning and/or mocking “autism moms”; (2) those with a puzzle piece/Autism Speaks on their page are told they are showing “hate towards autistics and support of eugenics”; (3) if someone doesn’t fully agree with a verbally-privileged autistic, they are “speaking over autistic voices”; and (4) “all ABA is abuse and should be banned.” Level 2-3 autistics, when discussing/displaying autistic traits, have been told “don’t act like that, you make autistics look bad.” Parents like me are told we do not have a “seat at the autism community table” and we should not be speaking on autism issues. This harassment keeps many autistics and their caregivers from feeling safe to post their experiences, contributing to the uneven representation of autism to the general public.
Third is the question of self-diagnosis. “Self diagnosis is 100% valid!” is chanted far and wide on the platform. I acknowledge there can be barriers to getting a diagnosis. Lack of health care, racial biases, lack of understanding of how autism interacts with gender, waitlists etc. can all impede someone’s ability to get a diagnosis. For those who are curious, however, the algorithm offers a lot of content that supports you diagnosing yourself.
For example, if you go to TikTok and search “RAADS-R” (a self-administered autism test from embrace-autism.com) you will find countless videos of people reporting their Raads-R scores with text such as “how many points do I need to be considered autistic.” But a research study concluded “ When used as a self-report tool, the RAADS-R has no clinical value.”
Then, many of these creators with their newfound self-diagnoses immediately start “advocating” without understanding the breadth of the spectrum. I am not saying everyone does this, but for the purpose of being able to accurately study misinformation, there is no way to quantify the number of people on TikTok who fit the actual autism diagnostic criteria.
Finally there’s the trend toward the growing movement of abandoning psychiatry in favor of pseudoscience. Autistic advocate and social psychologist Devon Price, author of “Unmasking Autism,” (his book and audiobook are #1 and #2 best selling “autism spectrum disorders” books on Amazon at the time of this writing and is referenced heavily throughout autism TikTok) believes that “the abolition of psychiatry is necessary for neurodiversity justice.” It is unknown whether Dr. Price is officially diagnosed with autism, as he has stated “I never share information about my own status either. I believe drawing a distinction between diagnosed Autistics and the self-diagnosed is counter to the project of disability justice.”
Joey Lawrence, an autistic/ADHD neuropsychologist, states that something called ‘Monotropism Assessment Questionnaire’ “is probably the best assessment of autism.” This questionnaire clearly has an exceedingly low bar for self-diagnosis, including items such as “I find sudden unexpected disruptions to my attention startling” and “Involvement in an activity of interest often reduces my anxiety level.”
It sounds laughable, but as of this writing, the video has 3.6 million views. One of the co-creators of the Monotropism Assessment, Fergus Murray, even made a video stating “this is NOT an autism assessment” and that it’s “potentially harmful” as an assessment. He tagged Dr. Lawrence on July 24, 2023 as well as two other creators (including another psychologist, Dr. Kim Sage who is exploring her own autism diagnosis and has heavily promoted Dr. Price’s book) asking them to not call it an “autism assessment” and none of them have changed their videos.
Dr. Lawrence also claims “sometimes someone can not look autistic, and be at a Level 3 autism.” She filters out comments that disagree with her, and refuses to acknowledge anyone making content addressing her statements. Creators such as these peddle a version of “autism” removed from the rigors of psychiatry. Those of us who quote psychiatric studies, DSM-5tr criteria, etc are often dismissed in favor of listening to “the autistic people who know autism best.”
TikTok’s algorithm, the harassment and bullying of mothers and other autistic people, its trumpeting of self-diagnosis, and the abandonment of psychiatry will continue the blast of autism misinformation on the internet. My son is coming up on his 30-year diagnosis anniversary. The “autism” I see in general on TikTok is hardly recognizable to me. The misinformation being shared is becoming increasingly dangerous to the autistics with more profound needs. I recently found a creator trying to “rewrite the narrative” that elopement in autism “isn’t an issue.” She can “leave a party if she wants,” and shouldn’t be criticized. Meanwhile, researchers state that 49% of families report their children with autism wander or elope from safe environments. This kind of dangerous untruth is increasing at an astounding rate.
“Rewriting the narrative” of our profoundly affected autistics is a frightening reality that is happening. Parents and high-support needs autistics are being buried under misinformation. I don’t think any research study of TikTok is ever going to be able to accurately capture the torrential flood of false information about autism that is being spread.
Cyndi Lambert is the mother of a man with profound autism. She lives in California. You can find her on TikTok and Instagram at @alies_mom.
Disclaimer: Blogposts on the NCSA blog represent the opinions of the individual authors and not necessarily the views or positions of the NCSA or its board of directors.