‘ADHD is presented as a quirky thing… it’s almost become entertainment’

According to ADHD UK estimates, 80 per cent of people in the UK who have the condition don't formally know it – that's 2 million undiagnosed. Henry Shelford, the charity's CEO and co-founder, says these people are 'struggling', and that 'a diagnosis, and the understanding and support that comes with it, could instead have them thriving'. It's against this backdrop that recent news reports have suggested that social media, and TikTok in particular, is leading to a flood of self-diagnosis.

It is difficult to know for certain whether TikTok is leading to more people seeking a diagnosis of the condition, but recent research has raised concerns over the reliability of ADHD-related information on the platform. The study, led by Anthony Yeung and published in the Canadian Journal of Psychiatry, found that 52 per cent of the 100 most popular ADHD videos on TikTok, each of which had around 2.8 million views, could be classified as misleading.

Professor Susan Young, a Clinical and Forensic Psychologist and researcher, and also Director of Psychology Services Ltd which assesses children, young people and adults for conditions including ADHD, has herself recently taken to TikTok to counter misinformation about the condition. Her videos include explanations of some of the symptoms of ADHD, the different ways they manifest in children and adults, as well as strategies for coping with symptoms.

'There is a very great difference between recognition, identification, assessment and diagnosis,' Young says. 'I think social media is very helpful for raising the profile of ADHD, although we want it done in the proper and correct way. If someone realises that they've had difficulties all their lives and that ADHD might be the cause, they're not self-diagnosing – they're recognising they might have a condition, just as someone might go to their GP because they think they have depression.'

Young said she had mixed feelings about online ADHD screening tools because people may mistake the results of these as a diagnosis. 'As psychologists we use screens or pre-assessment tools to indicate whether someone might have a condition. If people go online and use a screening tool which suggests they may have ADHD, it might be helpful for them to discuss this with a healthcare professional with expertise in ADHD. The problem is that there are long wait times for services, especially for adults – two to seven years depending on where you live and your age. Some people end up in the private sector and have to pay a lot of money to see someone… there is a place for screening if it is made very clear that the results are not a diagnosis.'

'Not all psychologists can diagnose ADHD'

A recent episode of the BBC's Panorama raised questions over private clinics charging hundreds of pounds for assessments, possibly over-diagnosing the condition, and inappropriate prescriptions for powerful stimulant drugs used to treat ADHD. Young has developed semi-structured interview assessments for ADHD in children and adults (the ADHD Child Evaluation (ACE) and ACE+ for use with adults*); she said the programme failed to show what good practice should look like in terms of assessment.

'After watching the Panorama programme I've updated the ACE and ACE+ to add in the NICE guideline specification of who can diagnose ADHD, which says that "a diagnosis of ADHD should only be made by a specialist psychiatrist, paediatrician or other appropriately qualified healthcare professional with training and expertise in the diagnosis of ADHD". It's really important to get that information out for people to understand that not all psychologists can diagnose ADHD. The key words here are "healthcare professional" – only clinicians with the right training and expertise can diagnose it.'

Young pointed out that when it comes to ADHD diagnoses it is important for clinicians to be able to determine the difference between primary and secondary disorders. 'When you're doing an assessment for ADHD you have to consider whether symptoms are due to ADHD or something else, such as depression, anxiety, personality disorder, bipolar disorder, or a head injury – all of which could explain presenting symptoms. What complicates the assessment though is that most people with ADHD will have a co-morbid condition – so you have to determine what may be a differential diagnosis (i.e. primary) versus what is a comorbid condition (i.e. secondary). In other words, you've got to consider the presence or absence of other clinical conditions and how they fit into the pattern of that individual's functioning over the lifespan. That's why you need to have clinical qualifications, because anyone can do a symptom check of ADHD but it doesn't mean that you have ADHD.'

Young also pointed out that, while celebrities announcing their ADHD diagnoses helped to raise awareness, and highlighting positive aspects of ADHD could help some people, this was not always the case. 'I don't know anyone who I treat who would agree that ADHD is a superpower, because that completely undermines the struggle that they have to go through every single day just to do ordinary things that everyone else seems to manage. In some TikTok videos ADHD is presented as a quirky thing… it's almost become entertainment.'

'Pills don't build skills'

Receiving a diagnosis of ADHD can take many years thanks to long NHS waiting lists, and once a person has their diagnosis it can be difficult to access treatment and support. Young and colleagues from academia, ADHD patient groups, and specialists in work and education recently published a consensus statement on ADHD services which said that the condition had been de-prioritised in healthcare.

The statement said that evidence-based national clinical guidelines for ADHD were not being met. The group called for training for professionals who may encounter people with ADHD and increased funding, commissioning, and monitoring to improve services.

Young said that people diagnosed with ADHD will often be offered medication but can very rarely access psychological support for coping with their symptoms. 'People might need help with time management, organising, planning, adapting their environment to help them cope. Imagine you've lived your life, you're 30, and then you're suddenly diagnosed with ADHD – you've got a lot of learned behaviours. Pills don't build skills – you've got to learn to change the ways that you've approached things.'

Young says that often, people receiving a diagnosis in adulthood have to go through a process of accepting themselves through the lens of ADHD. 'There's a lot of stigma associated with it. One of the biggest challenges is whether to tell their employer – they certainly should but they're afraid to because of the stigma.'

When it comes to treating children and young people with ADHD, the BPS Division of Educational and Child Psychology (DECP) has raised concerns over the prescription of drugs to children and young people with the condition, and published a paper suggesting that psychological alternatives to pharmacological treatment should be used as a first step, or should be used alongside pharmacological treatment if psychological approaches alone do not help.

Educational Psychologist and DECP Chair Dr Cynthia Pinto (UCL Institute of Education) said the number of prescriptions for the stimulants used in ADHD intervention were rising. She pointed to a 2022 CQC report on key issues in controlled drug management which found a rise in private and NHS prescriptions of drugs for ADHD between 2017 and 2022. 'These are powerful drugs and one of our main concerns has been that they haven't been trialled with young people, they're prescribed off-label, sometimes to children as young as three.'

In their paper the DECP pointed out that NICE guidelines say that medication should only be offered to children and young people if their difficulties with concentration, impulsivity or hyperactivity cause a persistent, significant impairment. 'The recent Panorama programme showed there are hugely long NHS waiting lists for assessment and the private sector has moved into plug that gap, but there is a lot of bad practice. Some places don't carry out a full developmental history or look at the home or school environment or for other causes of a child's behaviour.'

Professor Vivian Hill, co-author of the DECP report, added that others have questioned the diagnostic validity of adult ADHD in particular, with Joanna Moncrieff and Sami Timimi stating in a 2010 British Medical Journal debate that 'little more than aggressive marketing is available to support adult ADHD'. Pinto argues that assessment for ADHD should involve much more than a checklist of symptoms. 'In our paper we advocate for a paradigm shift away from psychiatric diagnoses in a medical model to an approach that is multifactorial, considering not only biological but also social, environmental and psychological factors, in line with the 2019 NICE guidelines.'

- Read the DECP's briefing paper Non-pharmacological interventions to support children who have difficulties with attention, activity and impulsivity.

- ACE and ACE+ are free to download from 'resources for healthcare practitioners' section here.