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Why are self-diagnosis rates rising?

More people believe they are neurodivergent

Content surrounding neurodiversity on TikTok has taken off recently, with #ADHD having over 11 billion views.

Tarah Elizabeth is a creator who shares her experiences of ADHD, a condition described as “a persistent pattern of inattention or hyperactivity that interferes with functioning or development”, with her audience on TikTok. After not receiving the treatment she needed for the condition until 23, Elizabeth decided she would start posting content about her ADHD to help others feel less alone.

“I came across a quote that stuck with me. It said, ‘be the person you needed when you were younger’. After reading this, I began to remember and think about all the years I spent wishing and hoping that I could speak to someone who had experienced what I experienced whether it was ADHD or other mental health issues,” she tells upstart.

“I eventually got to a point in my life where I made the decision that if I could share my experience and make just one person feel less alone – then it would all be worth it.”

With creators like Elizabeth taking to TikTok to share their experiences with ADHD, there has been a rise in self-diagnosis.

Neurodivergent ADHD coach and TikTok creator Sheila Henson says self-diagnosis can be a positive thing, especially for individuals seeking a sense of belonging.

“[If you can’t get a diagnosis], a self-diagnosis also opens the doors to that community. And the power of having a community with the same neuro-type as you is just vast and incredible,” she tells upstart.

This is especially true because she says getting an official diagnosis is a privilege for many reasons.

One of these reasons being financial, as in Australia getting an accurate diagnosis can cost hundreds, if not thousands of dollars, depending on where they go for the tests and what kind of assessments someone wants.

Another reason Henson outlines is that people with ADHD struggle with executive functioning, which are skills involving memory, flexible thinking and self-control that help us get through everyday life.

“It’s very difficult to call, make the appointment, fill out the necessary paperwork, have that done on time, show up to your appointment, show up on time and then maybe having to do that over and over again,” she says.

However, Dr Arthur Stabolidis, a psychologist who specialises in anxiety and adult ADHD, says he encourages people to see a professional if they have ADHD as self-diagnosis can oversimplify neurodivergence.

“Self-diagnoses does not take into account the complexities and differing types of a presentation. For example, some issues are primary, and some are secondary,” he says

Seeing the right person is also important. Henson believes that a lot of people don’t get the diagnosis they need because some mental health professionals are behind in knowledge about neurodivergence.

“You can get diagnosed by a psychiatrist, but then you have more likelihood of them dismissing you because, that’s not their specialty,” she says.

She says this causes a lot of people to go undiagnosed, due to common misconceptions.  She urges people to book a specialist in neurodivergence if they want to receive an accurate diagnosis.

“I actually get a lot of people telling me ‘I couldn’t get diagnosed with ADHD because I did well in school,’ ‘They wouldn’t diagnose me with ADHD because I wasn’t fidgeting during the meeting,’ ‘They wouldn’t diagnose me with ADHD because they said it doesn’t exist in adults.’”

“See if you can get assessed by someone who really understands neurodivergence, specifically the one that you’re looking to get assessed for.”

After researching ADHD later in life and beginning to see a psychiatrist for treatment, Elizabeth says that the procedure was extremely difficult and draining.

“After experiencing it for myself again at 24, this is not an easy process. Not only is it costly but the tests and assessments to get a diagnosis are reliable, controlled, and clinical in nature,” she says.

Elizabeth also believes that social media shouldn’t be a primary source of information.

“It is important to note that whether it be a health professional or someone speaking from personal experience, there is only so much information that can be crammed into a one-minute video.”

“Content on social media can be a great avenue to raise awareness and help those struggling, begin their journey. However, it cannot end there.”

Henson says that people should do thorough research when considering if they are neurodivergent. She acknowledges that there are many great resources online to help, it’s just a matter of finding the right ones.

“Start looking into the DSM, take some online quizzes, there’s some good online quizzes about different neurodivergence just for self-exploration, talk to your friends and family, about what they perceive with the understanding, you know, take into account how reliable of a source they are.”

She explains that it’s important to ensure that what individuals are experiencing isn’t linked to any other medical issue, as there is often a link between misdiagnosed neurodivergence and physical health issues.

“You might not think to see if you have any deficiencies, or you have something like that so some of the negatives of self-diagnosis would be that you might miss things or misconstrue things.”

Dr Stabolidis also says the symptoms someone is experiencing could be related to another mental health issue such as anxiety or depression.

“Anxiety may be causing ADHD-type symptoms due to the executive system being overwhelmed. On the other hand, ADHD symptoms may be causing anxiety symptoms because anxiety is necessary to maintain normal function. It is important to understand the dynamics between each disorder.”

Especially when comparing personal experiences shared online, Henson says it’s important to get information from multiple sources as everyone with neurodivergence experiences symptoms differently.

“If you just heard my description of time blindness, and that wasn’t what you experienced, you might just go, ‘Oh, I don’t have that’ and walk away. Or you might go, ‘Oh, I have that, I must have ADHD.’”

“[That’s] not what we’re looking for. But if you hear, you know, 100 people talk about how time blindness looks for them. And you’re like, ‘Oh, this makes sense’, to me that’s check one, you know, of ‘I might have ADHD.’”


Author: Chloe Jaenicke is a third-year Bachelor of Media and Communications (Journalism) student at La Trobe University. You can follow her @chloeejaenicke 

Photo: TikTok app by Solen Feyissa available HERE and used under a Creative Commons licence. The photo has not been modified.

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