At its best, social media serves as a platform that brings people from all sorts of backgrounds and beginnings together to share experiences or new ways of thinking. At its worst, it acts as an echo chamber for misguided ideas and a sound board for nonsense. Oftentimes, consumers and content creators can strike a balance between the two, using their own judgment to experience the internet in a positive way. However, it’s easy to end up on the wrong side of this line, especially if one does not know the warning signs.

In recent years, the online community as a whole has worked to destigmatize mental illnesses and disorders. Terms like “neurodivergent” have gained popularity to describe the way that some people’s brains work. Neurodiversity refers to people who stray from what is seen as “typical”  neurological function. According to an article in Harvard Health Publishing written by Nicole Baumer, MD, MEd, neurodivergency describes “the diversity of all people, but it is often used in the context of autism spectrum disorder (ASD), as well as other neurological or developmental conditions such as ADHD or learning disabilities.” 

Many content creators — neurodivergent people and professionals alike —  have come forward with their experiences and information, offering insight and support to those struggling mentally and emotionally. New attention to a historically taboo subject could mean positive change for that community. However, with platforms as extensive as TikTok, Instagram, Twitter and Facebook, positive change can come with a price. For the neurodivergent community, that price is inexperienced content creators spreading misinformation and leaving uneducated users with a false understanding of the topic.

Videos and reels sprout up all over the internet that list symptoms of certain disorders. Many of these videos take the same format. Something similar to, “5 behaviors you didn’t know were symptoms of ADHD.” Sometimes, professionals or those with experience make these videos and include helpful information backed up by a reputable source. Often, they don’t. Some of the time, these videos are made by creators with little experience in mental health and no diagnosis.

“Sometimes I’ll see in the tags at the bottom of it, ‘actually autistic,’ or just tags that let you know the person is a counselor, or therapist or something,” said Kylie Baker-Williams, a 22-year-old who deals with ADHD, and Generalized Anxiety Disorder, Panic Disorder and Depression. “But half the time, it’s just some teenager that thinks biting your nails means you have ADHD.”

 The videos will then proceed to list vague behaviors which might be a result of a disorder, but are not qualifiers by any means. One such video describes stepping over things without picking them up, leaving cabinet doors open or eating too much in one sitting as “things I didn’t know were signs of ADHD.” When properly executed by someone who has professional experience in not only neurodivergency, but also how to communicate that information to others (such as psychologist, author and TikTok creator, Stephanie Georgiou), these types of posts can bridge knowledge gaps about these issues. They can reach people who might not know that their struggles can be helped. But without the right foundation, found by those who consume information online irresponsibly, Baker-Williams argues people start to use these terms frivolously, diluting their meaning and trivializing stories of actually diagnosed sufferers. 

She’s experienced symptoms for most of her life, and was diagnosed in middle school. For her, the symptoms of her disorders have become part of everyday life. 

“I still can’t really remember birthdays, important dates,” Baker-Williams explained. “Phone numbers are impossible for me, and they always have been.”

As a result of her ADHD, Baker-Williams experiences extreme difficulty with her memory. But this symptom is not widely understood among amateurs online as a classic sign of the disorder. In fact, she has never encountered some of her most debilitating symptoms on any video on social media at all. Baker-Williams spends about as much time on social media per day as the average young adult, approximately two and a half hours, according to oberlo.com. She scrolls through Instagram or TikTok in her downtime, or while she waits in line at the grocery store, and has noticed the trend in false-diagnosing on numerous occasions.

“It’s so frustrating,” Baker-Williams said. 

Baker-Williams recalls her encounters with these types of posts, going back to her time in high school. She remembers the ways in which peers, with misunderstandings of the magnitude of mental disorders, reacted to her explanations. 

“When you trivialize it down to, ‘oh, everyone has these issues,’ it means that people don’t actually understand or believe you when you say you’re having larger problems than they are with it. Because they go ‘well, I also have trouble focusing, so your trouble focusing isn’t actually a big problem.’ Or, like, ‘oh, well, I also get scared and so I understand your panic attacks and I think you’re being overdramatic when you talk about them’.”

Baker-Williams believes that when people conflate words like “anxiety” with words like “stress” or “nervous,” all of them lose their meaning, and those who need the most support run the risk of not getting any. 

When misguided content creators narrow the scope of an entire disorder to a 15 second soundbite, it becomes harder to garner compassion for those who live it every day.

Most creators and consumers, however, have the best intentions when they enter the mental health conversation. Frenchy Mascaro believes that self-diagnosis of Bipolar Disorder had a positive effect on their mental health journey, even before a professional therapist could do it for them. Mascaro gained better insight into themselves from discussion boards on Tumblr, a social media site, and reading shared experiences from those who lived with disorders. This made it easier to reach out for help when the time came.

“It was mostly the mania, that I was kind of like, ‘I feel great and then I feel horrible afterwards, like, what is that?’ And then a lot of people, it was like discussion boards, things like that, where it’s like, ‘oh, Bipolar Disorder.’” 

Though Mascaro uses the internet as a helpful tool of self-exploration, some do not engage with it in such a positive way. 

Mascaro, however, used the introspection of exploring others’ stories to soften the blow of what might have been a harsh reality. When Mascaro received the news from their therapist that they struggled with Bipolar Disorder and Complex Post Traumatic Stress Disorder (CPTSD), they accepted it slightly more willingly, though they did have to take a day for themselves to process. 

“The day I got diagnosed, I had to take a full day to myself, because even though I self-diagnosed and I knew intrinsically, there’s a small part of me that I really wished it wasn’t this.”

Baker-Williams understands that feeling. While she grasps the scope of the disorders with which she struggles, she recalls encountering some posts made by people who glamorize mental problems and seem to want to identify with them. She explains her battles with basic self-maintenance while she was at her lowest mental state were anything but pretty, mentioning the struggle with getting out of bed or brushing her teeth. After a brief pause, she admits days at a time during which she could not find the motivation to shower.

“I’m not sure of a better way to say it,” Baker-Williams said. “It’s almost become this quirky thing to have mental health disorders, and it’s not quirky…they’re dark, and you don’t want to have them.”

Dana Baker-Williams, is Kylie Baker-Williams’ mother, but also coaches parents of children with ADHD on how to handle the symptoms and challenges the disorder presents. She also encounters those who don’t grasp the full scope of certain disorders.Through her business, Parenting in Real Life, Dana Baker-Williams often has to educate her clients on what ADHD actually is. According to her, many parents come to her unaware that a big part of ADHD means experiencing “big emotions.” By this, she means explosive reactions to rules or consequences, heightened anxiety in the face of changes in routine and other seemingly unprecedented responses. She encourages these parents to practice patience with their children when they seem to behave immaturely.

“You have to meet your kid where they are, and not where you expect them to be,” Dana Baker-Williams explains. 

Finding those who explicitly admit to “wanting” certain disorders might prove difficult, yet Kylie Baker-Williams makes an important point. Caden McNamara, who was recently diagnosed with Bipolar Disorder believes that constantly searching for superficial proof that one suffers from a mental illness as a form of identity not only creates the impression that these conditions do not have significant negative implications, but it also defines people by their disorders, making the disorders into personality traits rather than serious conditions.

“I do think, in a lot of ways, many disorders and conditions are collections of symptoms and ways of thinking that can be good frameworks to generally understand psychology and the way you conceptualize things as you interact with the world and people around you,” McNamara said. “But I think there’s a difference between sharing some symptoms with the diagnosis, and actually claiming you have this mental health condition without consulting a health professional. And I think it can be a little bit reductionist or bucket people into categories.”

While McNamara believes that spreading information certainly has its place, contextualizing the information one consumes is the most important thing. 

“When in doubt, you should consult the DSM-5, to see kind of the type of symptom groups,” McNamara said. “Groups of people are associating with a certain condition and realize it has a different ‘street meaning’ than a diagnostic one.”

The DSM-5 is the Diagnostic and Statistical Manual of Mental Disorders- 5th edition. The manual categorizes every mental disorder and lists symptoms which psychologists then use to officially diagnose patients. Most of these categorizations need multiple symptoms over many months or years to qualify someone for diagnosis, even by licensed psychologists. For example, according to the CDC website, the DSM-5’s criteria for diagnosing Autism Spectrum Disorder in children reads: 

“To meet diagnostic criteria for ASD according to DSM-5, a child must have persistent deficits in each of three areas of social communication and interaction (see A.1. through A.3. below) plus at least two of four types of restricted, repetitive behaviors (see B.1. through B.4. below).”

When non-professionals categorize others without it, misconceptions can arise. 

A diagnosis, however, requires much more than checking symptoms off a list, explains Dr. Sarah Holley, a psychology professor at San Francisco State University.

“A person typically seeks an assessment because they have noticed difficulties in certain areas of functioning, and they want to know why this might be (and if they meet the criteria for a specific diagnosis),” Holley says. “ The person conducting the assessment will consider all the different explanations that could account for the person’s difficulties. They will then use a range of tools to determine if the person appears to meet the criteria for one or more diagnosable disorders, and/or if other factors may better account for the difficulties.”

Many things affect a person’s mental state including interpersonal relationships, work or school. McNamara recalls that his diagnosis took weeks to assess. His therapists, according to him, wanted to assess if the difficulties McNamara was facing at the time could have been a result of diet, sleep or other such “agitators.”

“The first therapists I went to, for instance, had me stabilize my sleeping patterns and try and get adequate nutrition before making any diagnostic jumps, and wanted to see me for a little while,” McNamara says.

While it can be helpful to gather information online to aid in one’s mental health journey, as was the case for Mascaro, that isn’t the end of the process. Finding the proper support, counseling or medication if necessary can be a daunting endeavor, and short clips online rarely provide any resources that make it easier.

“A person should not rely on the internet alone to make a diagnosis,” Holley says. “It is important to seek care from a qualified mental health professional who has the necessary training and expertise to conduct an assessment and come to an accurate diagnostic conclusion.”