Why health organisations must level up ADHD awareness & support
I recently presented to the World Health Organisation about ADHD, having followed this strand of hyper-focus passion when someone dismissed the emotional aspects to me as these didn't have enough 'academic verification'.
My ADHD brain can work so quickly that I am frantically trying to keep up with it. What would you say to Directors at the WHO if you managed to get a meeting with them about something that is so complex and difficult to put into words, yet so important?
Here's what I ended up saying (having created the presentation the night before, as per usual):
The rate of ADHD diagnosis is growing exponentially.
US ADHD diagnoses amongst adults are growing 4x faster than amongst childre (26.4% increase among children compared to 123.3% among adults 200-16)
9.6% of U.S children were diagnosed with attention deficit/hyperactivity disorder, commonly known as ADHD, from 2005 to 2018.
Videos on the #AHD hashtag on TikTok have been viewed over 14.5 billion times
Researchers have identified environmentally induced symptoms of ADHD as ‘Variable Attention Stimulus Trait’.
When I was diagnosed with ADHD 5 years ago, I didn't know anybody at all who had it, which is why I ended up writing ADHD: an A to Z trying to figure it out myself. Today, every single person I tell I am an ADHD coach to, tells me they know someone who has it / thinks they have it / is going through the assessment process.
There may be lots of good reasons for this, like education and awareness growing (adults were previously unable to be diagnosed until 2008 in the UK), but also reasons like people being targeted with adverts on social media by companies profiting from this process.
A lack of information systems evidence, and research is resulting in misinformation & exploitation
The global attention deficit hyperactivity disorder market size was valued at USD 16.4 billion in 2028, and is estimated to grow at a rate of 6.4% until 2025.
Targeted adverts linking ADHD to negative body image by the tele-health pharmaceutical companies have been identified on social media.
Psychiaty-UK, a private company contracted by the NHS, recorded a quadrupling of referrals between 2020 and 2022 compared with the two previous years.
As an ADHD Coach, I speak to people who are being exploited by these processes like I was: being expected to pay thousands for assessments, only to find out that medication is only accessible at a rate of hundreds of pounds a month. I was told I couldn't transfer back to the NHS, and it was only because I became so unwell that I lost 10kg and burnt out that I demanded a letter, with which my GP was actually able to continue treatment regardless.
If you haven't been through these processes, you have no idea what is or isn't 'normal'. If you're paying professionals hundreds of pounds for an hour of their time, questioning their integrity is a very vulnerable thing to do. Ultimately, it leaves you questioning your diagnosis, maybe in a worse place than before.
Diagnostic Criteria - ‘Officially’ only relates to symptoms of inattentiveness, hyperactivity & impulsivity
This diagnostic criteria meant I didn't believe ADHD was 'real', even after I was diagnosed.
2. Emotional Symptoms such as emotional dysregulation are not officially recognised, despite substantial evidence
It was only when I heard about RSD in a podcast as the one emotional condition being related to ADHD that I could accept the rest of it. Without this being factored in to assessments, it leaves you questioning your entire diagnosis and feeling like something was missed.
People with ADHD are 5 times more likely to end their own lives.
Combined with the 'academically verified' symptoms of impulsivity, this emotional dysregulation is literally life-threatening to people. 1 person ends their life every 40 seconds: how many of these have ADHD?
3. Attention Deficit Hyperactivity Disorder is stigmatizing meaning there is no promotion, prevention or participation in credible, integrated strategies
The word 'Disorder' is used as a benchmark: everybody may lose their keys or find it hard to concentrate, but not everybody's life is 'disordered' by it. However, when this diagnostic criteria of establishing 'disorder' is not properly defined, and adults who have developed efficient coping and masking strategies are diagnosed, coming out to the world and telling them they've had a' disorder' may cause significant anxiety.
ADHD itself is still highly stigmatised and I still get people telling me I don't look or seem like I have it. All I know for sure is the difference in me before I started learning about it (chaos) and afterwards (relative stability).
4. ‘Official’ information about ADHD is very limited resulting in global spread misinformation.
Websites like the WHO and NHS give very limited information about ADHD, in contrast to ADHD instagram and TikTok accounts with millions of followers. They literally cannot keep up, in a practical or 'academic' sense, but they need to figure out a half-way point, because it undermines all of their credibility.
Social media is not a charity providing free healthcare information services: it is a business making money from people's attention. We (and specifically our insecurities) are the product. 'Official' health organisations must step up and increase education, making efforts to review recent evidence and figuring out a way to endorse people with lived experience who are doing the work on their behalf.
5. Support for ADHD is inadequate, with 7 year waiting lists in the UK, resulting in a global ‘ADHD industry’ and further stigma.
If I'd had to wait 7 years for an ADHD assessment, I would not be here writing this today. I would be dead.
All of the things I do today are in light of this, because I recognise how privileged I was to access this help and change my life.
The World Health Organisation were very receptive and supportive, and I really hope that this work will be reflected and changes that are so desperately needed will happen as a result.
Thank you to everybody who has shared their stories with me, especially those that helped make up this presentation. Your voice matters.
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