This month’s post is about a topic I am personally very
interested in, though I am going to start the post with a brief disclaimer. My
area of research is about technology in education for students with ADHD. I do
not have a medical qualification and these posts are based on my perspectives
and my own experience within the UK healthcare system and also some of what I
have come across in my research. While I believe what I am writing, it is
important to ensure you always look into topics like this to get your own
understanding and also get input from the people directly impacted. So, with
that out of the way, this post is about rates of ADHD diagnosis and how it is
currently being discussed in the media.
ADHD as a formal diagnosis has existed since 1987 with a revision of the DSM III and has a lot of variation in how it has been perceived and treated internationally throughout the last few hundred years. But as discussed in a previous post, even the current definition of ADHD has it’s controversies and disagreements (https://lukehalpinresearch.com/2023/04/24/is-adhd-a-good-name/ ). The origins of the condition are largely rooted in the diagnosis being tied to impulsive or hyperactive behaviour, which makes some sense given how medicine has often focused on the more visible effects of cognitive conditions. The most noticed aspect of ADHD is often the physical manifestation, which can be young children or adults fidgeting and being restless, hence it’s original classification as hyperkinetic disorder. In the 1950s the prevailing theory was that symptoms of hyperactivity, now attributed to ADHD, where the result of brain damage, before being defined in the 80s as part of attention deficit disorder with or without hyperactivity (https://www.guilford.com/books/Attention-Deficit-Hyperactivity-Disorder/Russell-Barkley/9781462538874 ) which leads to it then being classified as it is now, with the most recent version of the DSM describing it as a disorder with three presentations. This is a fairly limited summary of ADHD’s history, but that could be an entire post on its own.
So why does it matter to understand the diagnostic history of ADHD? Well, it is part of how we will understand the current issue. As something becomes more understood, it becomes more recognisable for what it is. That fact combined with efforts to combat stigma and taboo around mental health have led to many conditions having an increase in rates of diagnosis like those described in some of the articles above. The current stats put ADHD as making 3%-4% of the UK population which is an increase on previous figures (https://cks.nice.org.uk/topics/attention-deficit-hyperactivity-disorder/background-information/prevalence/#:~:text=In%20the%20UK%2C%20the%20prevalence,and%20in%20people%20with%20disabilities ). however, many experts and activists are sceptical of this figure with quite a few believing it is likely higher than what is reported. This is because as previously discussed, ADHD is still not fully understood in the public eye and medical criteria as it is more than just a condition of fidgeting.
As shown by some of the earlier headlines, some people think the condition is being over-diagnosed, or used as an excuse for bad behaviour and talk about instances of people receiving improper diagnosis. They will talk about how there are some experts in the field who say ADHD is just bad parenting or even just a result of trauma, or one of a hundred other things and assuming that these are the cause of ADHD behaviour, rather than these things occurring due to ADHD. While I will not talk too much about believing that they are wrong and discussing my reason for thinking this, I will talk about the big thing I think these articles should be addressing. The topics that should be getting discussed are the difficulties of getting support due to it being behind the barrier of requiring a formal diagnosis which can be difficult to acquire and spreading information of what ADHD actually is.
ADHD is described as a developmental condition largely effecting children, but the truth is that while it is believed to be developmental in the sense that it starts during developmental stages, it is a neurological condition impacting executive function throughout life, and is not something that is really grown out of, however some of the symptoms like hyperactivity can become less noticeable with age for some people, which can happen for a wide variety of reasons from learning to hide behaviours, to hormone levels and their impact on symptoms such as during menopause (https://www.berkshirehealthcare.nhs.uk/media/109514308/4-adhd-guide-menopause.pdf ).
More importantly however, is that while there is an argument to be had over certain instances of it being over-diagnosed, an indisputable fact is that it is underdiagnosed in certain populations such as women or people from certain cultural backgrounds. There are many thoughts as to why this is, but ultimately a lot of it could be put down to societal stigma and cultural differences. From personal experience, I know several people who have ADHD but in their initial conversations with a GP about getting an ADHD diagnosis, where told they didn’t seem “squify enough” or seemed too on top of things, or even where told that because they got to uni they couldn’t have ADHD (I write as a PhD student who has had an ADHD diagnosis for most of my life). These are all examples of not only stereotype and stigma, but also the impact that unequal diagnosis of a condition has on medicine and society. We have newspapers and magazines talking about ADHD the same way it has been talked about for years, when in reality there are so many people who are struggling to get a diagnosis and have had years of struggling with not being listened to by professionals in healthcare and education.
The main point of this however, and the reason I believe it is being talked about, is the fact there has been a significant increase in the rates of diagnosis. My personal opinion on this, is largely due to the condition starting to be better understood, so the symptoms are more accurate and more easy to diagnose (though still not perfect). But I think an even bigger factor, is that online community has had a huge impact on disabled people and their abilities to advocate for themselves. Twenty years ago, people didn’t have the same resources or communities to share their experience if a professional tried to brush them off. However, now there are online spaces where people can share their stories and help share coping techniques and encourage each other to advocate for themselves. These spaces have given people the tools to recognise their own conditions and push just that bit harder and get to the next stage, and talk to a specialist, as sometimes getting to that second stage is a game changer.
An example of this is my own experience of receiving an autism diagnosis. When I was young, I was diagnosed with ADHD and was under a paediatrician for my medication and had regular reviews. Throughout my childhood however, my mother often talked about how she thought I was also autistic, but to no avail from any professional. When I reached a certain age, I was transferred to a new service for my medication and was now seen by ADHD specialists. In my very first appointment with a specialist nurse for my medication, the nurse observed me and asked if I had ever been assessed for autism, which began the two-year process of getting diagnosed. All it took was one session with a specialist to get to that second stage and finally get support and understanding for the issues I had been having.
So, to summarise, as far as I am concerned, ADHD is an
underdiagnosed condition and is starting to be diagnosed more, but not for the
reasons you will see in the headlines. It is simply because we are getting
better at supporting each other, and getting better at understanding exactly
what ADHD is, though there is still a long way to go, and I look forward to
seeing how things look with each step we take in the right direction.
Link to post explaining some of the terms on this blog - https://lukehalpinresearch.com/2023/02/24/a-guide-of-terms-for-this-blog/