New research out today shows that there are key differences between people who self-diagnose themselves with attention-deficit/hyperactivity disorder and those diagnosed by a doctor.
Scientists at Michigan State University examined hundreds of thousands of Reddit posts from users of a forum dedicated to ADHD. Among other things, they found that self-diagnosed individuals were more likely to have a negative self-image than people clinically diagnosed with ADHD; they also tended to seek out validation online and from their loved ones more often.
The findings suggest it’s important to recognize how people’s identity surrounding ADHD can be shaped by the origin of their diagnosis, the researchers say.
A Reddit analysis
The study authors initially analyzed over 450,000 posts on the subreddit r/ADHD, made over a 14-year span between 2009 and 2023.
They ultimately studied a subset of 211,000 posts, made by 15,432 unique users, that clearly indicated a person’s diagnosis status. In one example of self-diagnosis cited by the authors, the user stated that they were “undiagnosed but suspecting things.” They analyzed the language of these posts, looking for signs of validation-seeking, negative self-image, and internalized stigma (one example of the latter: “I avoided treatment for years because of the shame of the source”).
All in all, they found that people with self-diagnosed ADHD were more likely to look down on themselves and to express internalized stigma in these posts than those with clinically diagnosed ADHD. They were also more likely to express wanting validation of their condition, both social (from their real-life peers) and media (from mass media portrayals or large online communities like r/ADHD).
At the same time, having social validation was associated with people having both negative and positive self-images. And while people with clinically diagnosed ADHD sought validation less often, the link between validation and a person’s self-image and internalized stigma was actually stronger in this group than in people with self-diagnosed ADHD.
What to take away
The findings appear to reaffirm a concept in psychology known as self-verification theory, the researchers say, which argues that we prefer other people to see us the same way as we see ourselves.
In this particular case, they argue, people with self-diagnosed ADHD are more motivated to seek confirmation of their issues in online communities like Reddit since they lack formal recognition from a doctor. But while being validated might improve a person’s outlook in some ways, it can also reinforce a person’s negative self-perceptions and belief in stereotypes associated with having that condition, which then contributes to internalized shame and stigma.
The major, if perhaps obvious, takeaway here is that online communities and social media can greatly shape how individuals with ADHD view themselves, the researchers say. And ideally, these communities should share accurate information about the condition that can support a positive self-image and reduce stigma.
“Collaboration with mental health organizations is essential to ensure the dissemination of evidence-based content, which can strengthen social support networks and promote positive mental health outcomes for the ADHD community,” the authors wrote in their paper, published Wednesday in PLOS-One.
Unfortunately, that might be easier said than done. Other studies have suggested that misinformation about ADHD is rampant online. A study this past March, for instance, found that nearly half of the most popular ADHD-related videos on TikTok contained misleading claims about the condition; the researchers also noted that the more people watched this kind of content, the more likely they were to overestimate how many Americans are thought to have ADHD (it’s estimated about 6% of adults and 11% of children are currently diagnosed with ADHD).
It’s also worth noting that even experts in the field are still debating over just how common ADHD truly is among the general public.
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