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):
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.
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.
This diagnostic criteria meant I didn't believe ADHD was 'real', even after I was diagnosed.
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.
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?
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).
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.
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.
EMCC Accredited at Senior Coach level. ADHD and Neurodiversity Support and coaching. Helping you find your way - in the way that works for you. Working with neurodivergent adults, specialising in ADHD.
3yYour work is accessible, friendly, lively, relevant and comforting. Thank you for sharing so much and helping so many to feel they are not alone.
LinkedIn Poland Women Leader| Attention Economy| DEI & Neurodiversity| International Commerce|
3yI really appraciate all your work and dedication to the cause Leanne Maskell - at the same time I have a feeling that currently WHO is feeling in a way ‘relieved’ and the fact that amazing, talented people like you who wrote books on ADHD, create courses on the same topic and buid a community in order to help and spread awarness - they might be thinking - somenodu is already working on it - so it’s not all bad? that’s what somehow let’s the off the hook, allows them to ‘rely’ kn somebody elses hard work. It’s almost sad when I think that sometimes you can’t really scream loud enough in order to be heard. In Poland where I live there are at least 15 suicides per day, every day due to depression. And at least 3-4 people from that pool are neurodiverse, misunderstood, never appreciated. So we are not talking about well-being or self-care. Taking care of ADHD/Austism spectrum people would save many more lives if it’s been treated less like a ‘Social Media’ activity and more like a serious matter that needs to be addressed. Only because we are not using a wheel-chair it does not mean we can be expected to allways function, to always perform, to always deliver best results. Thank you for being our voice Leanne, that’a so much needed.
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3yI would tell them were brilliant and under utilized simply because we don't fit a societal narrative. That there are hidden gems, within the what they would consider chaos. Our ability to spot patterns in moments, almost predict certain situations simply by what we have subconsciously analyzed. Some, like myself, are super sleepers, completely functional with minimal backlash on 3-4 hours of sleep a night. We don't meet production goals we exceed them without much effort. Some of their best work on a short deadline and it doesn't phase them, they may even prefer it. That they are regular people just think a differently but arrive to the same answer as everyone else. Your work is amazing, please keep giving out information for others so that they may also succeed.
Growth @ Medal | 👋 Reach Out: alistair@medal.tv
3yI'm so inspired that you had such an excellent opportunity to spread ADHD awareness. I completely agree that social media shouldn't be a supplement for professional support. As if the professionals still don't know the whole picture, how can influencers expect to know it? Misinformation is a disservice to the neurodivergent community as much as or even more than hate speech or related berating content. Thanks for sharing your experience and starting my day off right. :)
Wellbeing and Culture Strategy Adviser | Helping organisations embed wellbeing into culture, workplaces & the built environment
3yThis is brilliant Leanne Maskell. So needed, thank you 🙏🏻