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  • Writer's pictureLauren Crowley Taylor

The Rise of Mental Health Misinformation: Autism Edition

If you’ve used social media at all these past few years (particularly, Instagram and TikTok), you are probably privy to the explosion of content focused on mental health and psychology.

As these platforms have transitioned from showing you content from your friends and family (that you chose to follow), to algorithm-based recommendations, people are left wondering “why is this app trying to diagnose me?”

And I am left wondering, “why are non-licensed individuals clogging up the airwaves with inaccurate information, while amassing large followings?”

Usually their professed profession is either “life coach” or “mental health advocate.” These titles, of course, are not regulated in any way. There are life coaches who do indeed help others, and plenty of advocates for these topics that altruistically try to inform the public. These might not be the ones showing up in your feed, however.

Occasionally licensed therapists and psychologists create content on these platforms – for better or worse. It’s been a toss up for me, personally, on whether or not these professionals are making content aligned with clinical practice, or with new narratives not grounded in evidence-based practice.

Why would a layperson devote their time to creating content about mental health conditions, despite not having training in that area? Of course, giving them the benefit of the doubt, perhaps they are seeking an outlet, or connection, or wanting to raise awareness.

But we must acknowledge another important element: brand endorsement. We could also discuss the need for attention, a universal need, as a potential motivator.

What do we make of social media content, knowing that the creator is potentially motivated by money, and has no regulatory body enforcing an ethical code upon them?

Licensed mental health professionals must navigate ethical laws around dual relationships and product endorsement. For instance, in the Licensed Professional Counselor code for my state of Texas, they say:

“A licensee may promote the licensee's personal or business activities to a client if such activities, services or products are to facilitate the counseling process or help achieve the client's counseling goals. Prior to engaging in any such activities, services or product sales with the client, the licensee must first inform the client of the licensee's personal and/or business interest therein. A licensee must not exert undue influence in promoting such activities, services or products.”

I would be hard pressed to find an ethically-minded therapist who would be okay with pushing products on potential clients and strangers over the internet as part of a sponsored post. But I’m sure it happens!

And for those trying to forge a new career in influencing, there really are no rules.

I’m sure I don’t have to spell it out, but in order to get these brand deals, a wannabe influencer must amass a following. We’ve seen that polarizing content seems to rise to the top. And when it comes to content about mental health conditions, the more general and relatable, the better. We don’t often see influencers posting about the DSM-V-TR criteria for disorders. They tend to post about insignificant, normal, everyday human experiences. Things so called “neurotypicals” experience regularly. I do come across content that accurately speaks to certain conditions, but often, it speaks to everyone.

Which is much better when trying to gain a big following! Only speaking to 1-5% of the population just won’t do!

What are the topics we keep hearing about on social media? Gaslighting, “toxic” relationships, trauma, ADHD, and as of late, autism. “Sensory issues” seems to be a rising buzzword as well.

Why these topics? That could be a deep dive of its own. What inspired this post, though, is the rise of misinformation around Autism Spectrum Disorder (ASD).

Influencers and the influenced may not be aware, but the DSM-V was revised in March 2022. Various changes were made, including the criteria for Autism Spectrum Disorder becoming more strict, in order to clarify and maintain a high diagnostic threshold. Whereas it was not clearly laid out before how many of the social difficulty criteria were required to qualify, now all three must be met.

Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.
Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication.
Deficits in developing, maintaining, and understanding relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers.

The majority of the content I’ve been witness to around autism (often created by those that have opted to “self-diagnose”) focuses on sensory difficulties, and a general awkwardness when it comes to social relationships. Both of these can be explained by a myriad of different conditions (and everyday human experience). The move towards the pathologization of average human experience, once again, is a topic for a different deep dive.

A pattern I have noticed, as well, is the tendency for those already diagnosed with ADHD to tread into the waters of self-diagnosing themselves with autism. ADHD and ASD do have overlap in symptoms. Differential diagnosis by a professional is required to tease it apart.

Sensory sensitivity, difficulty with social interaction, and even “specific interests” can be associated with ADHD. “Specific interests” for those with ADHD may be more a result of an obsessive mind that goes through phases in terms of hobbies/interests, whereas in ASD, interests may be more persistent and singular, hence the word “restrictive.” You can compare an individual with ADHD who cycles through intense hobbies (one day learning everything about gardening, impulsively buying the tools, then moving on to astronomy) to an individual with ASD who has a lifelong, or decades-long, passion for certain subjects (airplanes, a certain historical period, etc.). In my personal and professional experience, individuals with ADHD may obsess over certain interests due to impulsivity, hyperactivity, and a lack of stimulation, whereas those with ASD may focus on their interests due to it being their comfort zone, in comparison to spontaneous conversation that may focus on a variety of topics. Their specific interest may be a source of social withdrawal and disengagement from reciprocal interaction.

Obviously, with the overlap, it makes sense that the public may get confused and fall down internet self-diagnosis rabbit holes.

My hope for laypeople is for them to practice internet literacy. To ask themselves: Who is creating this content? What are their credentials? What might motivate them in influencing others (money, likes, views, clout)? What's their angle? And to remind themselves that there is a difference between relating to certain traits or symptoms, and meeting diagnostic criteria for a disorder.

The “spectrum” of Autism Spectrum Disorder does not refer to a spectrum between people with autism and people without autism. Autism Spectrum Disorder is a collection of disorders that used to be separated out in the DSM: Asperger Disorder, Autism Disorder, and Pervasive Developmental Disorder, Not Otherwise Specified. The “spectrum” refers to the variability in these three disorders that have enough in common to now be grouped together. I surmise that lumping them together may have created a pathway for our current situation (self-diagnosis via social media). I have personally never seen any content about Asperger Disorder on Instagram, which was once known as the “milder” form of autism. Perhaps it would have been the buzzword if it was kept in the DSM. For now, we have essentially “neurotypical” people self-identifying as autistic, when they perhaps would not have even made the cut for Asperger Disorder a decade ago (it was lumped into ASD in 2013).

My hope for professionals is that they speak out against misinformation, while remaining professional and ethical. I do not dream of more therapist-influencers. I do dream of a world where social media provides a verification system for licensed mental health professionals, or adds a caveat to mental health posts letting the audience know when the creator is not a licensed professional. That probably won’t happen, but a therapist can dream.

Most internet trends crescendo and then fall away. In my clinical experience working with adolescents, Dissociative Identity Disorder and Tourette’s Disorder were popular to fake in 2020-2021. Assuming Autism Spectrum Disorder is the new disorder du jour, its heyday may end in the coming year. But where will that leave the accurately diagnosed? My hope is they get their online spaces back, and get to control their own narrative. It seems that just when autistic adults got to speak for themselves (rather than their parents, or ABA organizations, or vaccine-conspiracy pushers), a new rival arose to vie for their position: the self-diagnosed.

Self-diagnosis, for some, is a step towards professional diagnosis. For others, it’s a dead-end, reinforced by the echo chamber of other young people opting for self-diagnosis.

Some individuals with autism remain completely unaware of the condition until it is suggested by a professional. Some individuals without autism attach themselves to the disorder, and persist in this identification, even when another explanation is suggested by a professional.

Lastly, I would like to offer the Highly Sensitive Person concept as a potential explanation for these cases. Dr. Elaine Aron formulated this concept, and has demonstrated through fMRI that it is a distinct brain pattern, separate from autism. It is not a disorder, and not included in the DSM. It could be referred to as “functional sensory sensitivity.” I enjoy this framework, for it explains both emotional and sensory sensitivity, while not stepping on the toes of individuals who struggle socially in a way that “allistics” may never understand.

- Lauren Crowley Taylor is a Licensed Professional Counselor and Licensed Marriage and Family Therapist. She is the owner of Witch Hazel Therapy. This blog post is based on Lauren's professional and personal experience, and is not a substitute for mental health care.


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