Using social media apps such as TikTok as a tool for diagnosing ADHD is a “double-edged sword”, one of the country’s leading campaigners in the area has warned, amid record numbers seeking help.
ADHD Ireland chief executive Ken Kilbride says while TikTok is useful in helping young people as a first step in diagnosing the condition, it must be followed by a proper assessment from a fully trained professional and, more importantly, the “right” treatment.
The charity has seen a big spike in the number of adults seeking an ADHD diagnosis, together with record numbers of children and teenagers also looking for a diagnosis, and believes TikTok is a key driver.
The social media platform has more than 3.5m videos under the hashtag ADHD, with millions of other videos under other hashtags ranging from ADHD routines to medications and symptoms.
The charity runs a support line, which receives around 6,000 calls a year, offering advice and guidance for those coming to terms with ADHD. Six years ago, 100% of calls to the support line were from parents. This figure has now dropped to 60%, with 40% of calls coming from under 18s.
It is believed that between 30% and 50% of all new referrals to the HSE’s mental health services are adults hoping to access an ADHD assessment and treatment.
Mr Kilbride said for many people, it does not come as a surprise to receive an ADHD diagnosis later in life.
“They know they’re out of step with the rest of society, their friends, the low self-esteem,” said Mr Kilbride.
“We find that there’s a very high correlation between people self-diagnosing and actually getting the diagnosis of the condition.”
Diagnosis a first step
However, Mr Kilbride said a diagnosis is only the first step, and the danger revolves around untreated adult ADHD, which can cause a severe impact “across the entire lifespan”.
From marital breakdown to higher rates of unemployment and substance abuse, paired with an increased risk of co-existing psychiatric conditions such as anxiety and depression, unmanaged ADHD can destroy many aspects of life.
Careful diagnosis is key to ensure these symptoms are managed and contained, avoiding any negative health consequences.
“We’d always say if you think it’s ADHD, go get the assessment to rule it in or rule it out, because the general principle is that it’s a very manageable condition once you get the right treatment. I do need to preface the words ‘right treatment’, but once you get the right treatment, it’s very manageable.”
Mr Kilbride said the casual use of the term ADHD, describing bouts of hyperactivity or forgetfulness, is incorrect, and only reflective of the condition when these symptoms “become an impairment in your life”.
“There’s sort of a criteria of a point — you know you have the money to pay your bills, but you forget to do it; you have an important meeting with the boss, but you didn’t turn up.”
He said there is a high no-show rate recorded by clinicians operating private practice sessions for adults with ADHD.
“People know they need the treatment, they know they need the assessment, but they forget to turn up or they turn up at the wrong time. So there’s lots of things at that point where it becomes an impairment in your life and it’s causing harm to you, whatever that may be.”
Mr Kilbride said many people hoping to determine whether they have ADHD have turned to neurodiversity consultants or coaches for an assessment, many of whom have not received adequate training.
You’re not going to become an ADHD coach after a weekend’s training, there’s more to it than that.”
He said wasting money and hearing advice and strategies that may not work are only some of the dangers of attending someone without proper training.
“What you do need to do is to get the assessment done by a medical professional, who would have the experience and training in ADHD.
“One of the things about ADHD is the inability to retain focus, but if you’re anxious and depressed, you’re going to have the inability to retain attention as well. It’s being able to tell the difference between the two.”
Eva Collins, 16, from Moyvalley, Co Kildare, knows all too well the struggles of ADHD.
Her mother, Bridget Collins, said the transition year student’s symptoms were “very prevalent” from a young age, but she got a formal diagnosis only at age 11, following difficulties retaining information in school.
Bridget Collins said one of the dangers surrounding self-diagnosing ADHD is receiving improper treatment for the condition, which is often linked to additional neurological conditions.
Her daughter Eva is also diagnosed with autism and OCD, labelling herself a “audi-HDer”, she said.
“ADHD has a friend, more than 50% of the time, be it dyscalculia, dyslexia, autism, OCD, other neurological conditions that fall under the neurodivergent umbrella.
If you just stop with ADHD, you have no idea of the other struggles that you might actually be facing that would help if you’ve got a name and label put on them.”
She said this would allow the individual a “greater understanding of themselves”.
She said there is also a danger that ADHD has become the latest mental health ‘trend’, and those self-diagnosing using TikTok videos “dilutes” the very real difficulties of those with the condition.
She highlights the challenges her daughter faces.
“The big struggle would be having to conform in the classroom where you can’t. You’re just not capable. It’s just impossible.”
The mother of four said other students can be “cruel”, often name calling or labelling her daughter as annoying.
“They’re basing her personality on what they see in the classroom. There will always be people like that, be it in work or wherever, but it’s just another element of it.
“It’s really difficult to take the labels of ‘annoying’ and replace them with something like, ‘hang on, it’s not annoying, it’s actually a neurological condition’.”
