Exposing the ADHD Scandal
When I saw an upcoming BBC Panorama episode exposing ADHD scandals, my first reaction was: good. I want to help.
I immediately wrote to the reporter covering this, Rory Carson, and spoke to him. The impact of an expose like this may cause a lot of discomfort to many people and lead them to question their experiences, but it's vitally important that these conversations are happening.
I have often been asked by reporters why I'd contribute to demolishing the ADHD 'industry'. The answer is because I care about the people I work with above anything else.
When I set up ADHD Works, never in a million years would I have expected to be coaching hundreds of people, training companies like Disney, presenting to Directors of the World Health Organisation, running an ADHD retreat, or training up 50 new coaches within 1 year.
I didn't set it up to get rich or to be 'famous'. I set it up because I experienced severe exploitation myself from the 'ADHD industry' which almost killed me. I wrote ADHD: an A to Z to process this for myself and share it with others.
My experience
I always start corporate training the same way: explaining that not everybody has ADHD. The diagnosis is not something I wanted, but it saved my life.
Before I was diagnosed, I couldn't stay in a country or a job for longer than a few months, and was constantly arguing with everybody in my life. I became obsessed with looking for the best way to end it.
I spoke to doctors about this, who said I was fine because I had a law degree. I eventually curated a list of 10 conditions on Google, and was absolutely terrified of going to a psychiatrist to confirm this. I genuinely believed I'd be sectioned into hospital and never let out again.
It was when I went skydiving and was in tears that I didn't die, that I finally went to A&E. A doctor told me to take mood stabilising tablets instead of going to see a psychiatrist. These tablets had a 'risk of suicide' in the instructions, which was my turning point: I felt like I'd been given permission. I made a plan to end my life at the end of the week, and knew I would do it.
During this time, I realised that I didn't need to kill myself: I needed proper help. I finally booked an appointment with the 'best' psychiatrist I could find.
He told me I didn't have any of the conditions I'd presented: I had ADHD. I burst out laughing: ADHD was something that only affected young boys. I could obviously concentrate - I had straight A's. He said my 'very bad' ADHD didn't show up in grades, but in the fact I couldn't think coherently in any other area of my life. He asked me a list of questions, to which every single one I said a resounding yes.
Then I demanded medication. He said I'd have to get 2 people who'd known me throughout my life to provide statements, and return for another session. My ADHD was so bad that I went on my 2 week holiday to Bali the next day, and moved in with a complete stranger, doing a partner visa with them at $8000. A year later, I returned to finish what I'd started.
As I found out, this was actually just the beginning. I was formally diagnosed and given medication, with no further explanation of what this should do or how my life should change. All in, I'd paid over £1000. Then the psychiatrist didn't explain ADHD, but did explain how I was expected to pay £300 for the rest of my life for medication, returning to him each month for a prescription. In response to me asking how I was supposed to pay for this with hardly any income, he said I should ask my parents (who equally couldn't afford a lifelong £300 monthly subscription!).
The medication made me extremely unwell, experiencing panic attacks and an inability to eat or sleep. I paid £200 to speak to the psychiatrist again, explaining that I needed a reduced or different type of medication. He refused, and increased the dose - another £100.
I then started taking this only on days I 'needed to focus', which saw me lose 10kg of weight, my skin develop acne and turn grey, and my family burst into tears when they saw me. I paid another £200, begging the psychiatrist to transfer me to the NHS. He said this wasn't possible, as I'd have to wait for an NHS assessment, which could take years. He refused to lower the dose and said I should take anxiety medication in addition to this medication that was obviously making me extremely ill.
My family said I was being exploited, and ADHD was something made up by psychiatrists to make money. This seemed to be pretty accurate, given my situation, making me question the entire diagnosis. I demanded a letter from the psychiatrist, saying I'd have to go to the NHS. I blamed myself, because I was so chaotic that I didn't even have a GP when I'd started out.
I got one, who said they could in fact continue prescribing me medication based off this letter. In the meantime, my diagnosis was confirmed via the NHS a few months later. I took a break from the medication and recovered before deciding to try it again properly on the lowest dose for a month, and saw my life transform to one of relative stability, where I'd managed to get a job in mental health and disability law.
When I moved house and GP, my new doctor mentioned in passing that I'd have to wait 7 years if I wanted to increase the dose, as this was how long their waiting list was for ADHD assessments. I couldn't believe it - if I'd had to wait that long for help, I'd be dead. I immediately started writing ADHD: an A to Z to help others, but was too scared to publish it. Therapy was refused to me on the NHS, because I had ADHD.
When I found out Government funding via Access to Work existed that could pay for me to have coaching with someone who actually understood ADHD and could help me to work with it, I couldn't believe it. I knew I had to publish ADHD: an A to Z to get this out in the world and trained as an ADHD Coach for a year - and here we are.
Other's experiences
A few years later, I am living a life I never could have dreamed of. Yes, a 'successful' entrepreneur, but more importantly, a life where I have relatively stable relationships, a home, work, and where I don't wake up every day wishing that I hadn't. I will never take this for granted, which is what drives me to work 100+ hours a week to help others in the same situation: I can't help it.
I have professional and personal experience in ADHD, but I am extremely privileged to be in this position. It's something I will never take lightly, which is why I am obsessed with ensuring there's high quality support available.
Here are some other people's experiences of the 'ADHD Scandal' that I've helped them navigate over the last few years:
someone paying £1000 to be diagnosed with ADHD a few hours after seeing misinformation on social media saying that things not having a 'place' in the home is a symptom of ADHD (it's not).
a teenager who had previously been in hospital for anorexia being diagnosed with ADHD over a 1 hour zoom call, where they were prescribed instant release stimulant medication. Through coaching, we established that they'd developed an addiction to this medication in using it to stay awake all night and go out clubbing. Their life was at serious risk, and their parents were exasperated at how exploited they'd all been, with nobody to help.
many people being 'diagnosed' with ADHD through a company that told me they'd diagnosed everybody who'd sought out a diagnosis with them, offering me £150 for referrals, which I refused. They weren't psychiatrists, but people who could diagnose ADHD but not prescribe any follow up medication - this would cost an additional £500 at least, something people only found out after being labelled with a life-changing diagnosis.
many people being diagnosed through a company that offered them payments for referrals made through an affiliate scheme.
people being refused medication changes from psychiatrists, even after explaining that they were very unwell from it. They were instead offered additional medication.
people being asked to volunteer their time and energy for 'charities' that actually do nothing. Complaints were silenced with legal threats.
people seeking out diagnosis' for no other reason than to get extra allowances in exams or at work.
many people being diagnosed with ADHD and medicated after learning about it, who didn't actually have a problem to start out with. In contrast, the medication caused them significant problems - an inability to sleep or eat, panic attacks, and crippling anxiety about what it was 'supposed to do'.
people being diagnosed with ADHD in 30 minute zoom calls after waiting for months, before being told to wait another 6 months to access medication.
people being turned away from NHS assessment providers unless their lives are at risk or they're self-harming, and provided with a quiz instead.
ADHD is not a personality quirk. The medication can be extremely dangerous, to the point of risking lives. Being diagnosed with ADHD is life-changing: it throws into question everything you believed about yourself up until that point.
There are several reasons behind this ADHD Scandal:
1. The pharmaceutical industry
In the 1970s, there were 106 mental disorders listed in the Diagnostic and Statistical Manual of Mental Disorders (DSM), as decided upon by a committee of psychiatrists. Today, there's 370. Normal human feelings like worry are medicated as anxiety, sadness or grief as depression, difficulty sleeping as insomnia, and so on.
No biological causes have been found for the vast majority of these conditions. This is why there's no physical tests, including for ADHD: it's all subjective. Psychiatric labels are just that: socially constructed label ascribed to groups of symptoms. This doesn't mean mental health or ADHD isn't real - I am living proof that it certainly is - but the facts are that psychiatrists do not open up your brain to look inside. There is no universal way of assessing these symptoms: it's happens behind closed doors. As a result, people are being misdiagnosed every day.
In 2013, the new edition of the DSM reached the number one selling book on Amazon's non-fiction bestseller list. James Davies, author of 'Sedated', found out why. A professor at NYU told him, 'the bottom line is that the pharmaceutical industry has been buying DSM in bulk and then distributing copies for free to clinicians... disseminating it is just good business: it drives up diagnosis rates, and with this, prescriptions.'
This doesn't mean your diagnosis isn't real or valid: it means that you know yourself best. Don't let stigma or noise convince you otherwise. If you're struggling, and if you resonate with the symptoms of ADHD - this is valid. Your experiences are valid.
2. ADHD has only been diagnosable in UK adults since 2008
If you're wondering why it took you your whole life to find out you have ADHD, it's maybe because 10 years ago, nobody knew much about it. This can help with processing the pain of a lifetime of struggles: nobody knew. ADHD diagnosis' are growing 4x faster amongst adults than children in the USA.
My parents took me to doctors as a child, because I didn't seem to listen and walked into tables right in front of me. Instead of identifying this as ADHD, I was 'diagnosed' with a build up of earwax. I'd regularly fall asleep in class - something I only learned was linked to my interest-based nervous system during research for ADHD: an A to Z.
Everybody is doing the best with what they have available to them at the time. Unfortunately, this means that potentially millions of people have gone without diagnosis, particularly women and black people, who have been and continue to be dismissed by the medical industry as 'dramatic'.
Watch Abigail Agyei MBE, Yes, Black women have ADHD too and need your Attention! TEDx talk here
3. The diagnostic criteria for ADHD is outdated
The reason we often associate ADHD with hyperactive school boys is because that's who the diagnostic criteria is based around. This is what I presented to the World Health Organization on: the fact that this outdated criteria is neglecting millions of people who desperately need help.
To be diagnosed with ADHD, your life needs to meet a threshold of 'Disorder' - this is the reason for the stigmatising name. You need to have 2 or more areas of your life significantly negatively impacted by symptoms of inattention, impulsivity, and/or hyperactivity. As above, there's no one standard of how to establish whether a person meets this threshold.
The fact that this criteria doesn't include executive functioning skills (which are 30-40% developmentally delayed by ADHD), particularly those relating to emotional regulation, puts peoples' lives at risk. Without a doubt, Rejection Sensitive Dysphoria is the main factor destroying the people's lives that I work with, despite this not being 'academically verified'.
Having ADHD comes with a 5 times higher risk of suicide. 1 in 4 women with the condition will have attempted suicide. The combination of difficulty regulating our emotions with impulsivity, is incredibly dangerous.
The one thing I know to be true is that the medication I take stops me from trying to figure out how to kill myself because of minor problems like missing a train, or being overwhelmed with what to do on the weekend. This is how I know ADHD is real: the right treatment can completely transform your life.
Without it, ADHD can kill you.
A diagnosis is not necessarily the 'right treatment'. People are typically 'diagnosed and dumped', with zero follow up support - leading them to search for what this means by themselves.
With 1 person taking their life every 40 seconds, and 7 year waiting lists for NHS assessments, this is something our society must urgently address.
4. Capitalism exploits market failures
When I quit my job to train as an ADHD coach, I never dreamed that I'd have a coaching waiting list of over 400 people. As listed above, I speak to people every single day that have been assaulted by the capitalist nature of the mental health industry. I have tried to adapt ADHD Works as I go, to help as much as I can.
We are living in a world where we'll never be able to keep up with the standards set for us. There's always someone else to compare ourselves to, to feel like we're lazy and not 'reaching our full potential' - because it's limitless.
The global ADHD market size was valued at $16 billion in 2022, and is estimated to reach $32 billion by 2032, growing at a rate of 7.1% until 2025. In contrast, the depression market size was $10 billion in 2022, expected to reach $16bn by 2032. Anxiety was $8.5 billion in 2019, projected to be $13bn in 2027. It's clear that ADHD is a huge trend when it comes to capitalism.
Capitalism works by creating problems to sell us the answers to. We can see this in business: more companies than ever before are talking about neurodiversity and the 'superpowers' it comes with. Less so are backing this up with real action, such as having policies in place to meet their legal obligations when it comes to accommodating the substantial disadvantages that disabled people experience in the workplace. This is why I created ADHD Champions - to give people practical skills and tools to have these follow up conversations and take action.
Almost every day, I hear experiences of people being discriminated against at work for having ADHD. These people do not have the luxury of leaving their jobs: they're trapped with mortgages and children to look after. Even so, we can see with a 30% increase in employment tribunal cases relating to neurodiverse conditions in 1 year, that this is changing.
Many people have referred to me as an 'influencer', but I have never set out to do this. This newsletter alone has over 10,000 subscribers. A year ago, there was very few people talking about neurodiversity on LinkedIn - but now my feed is full of it. I am constantly being tagged in posts aiming to spark controversy to create financial opportunities for people in this industry. This is as much capitalism as anything else: ADHD has now become a status being actively promoted, and people are actively seeking out a diagnosis as the answer to their problems.
Watch: The Reality Manifesto x BBC News here
5. Social media makes us all victims
I wrote 'the Reality Manifesto' because when I became an ADHD coach, I was inundated from parents desperate for support for their children. Many had been diagnosed with ADHD, but most had extremely serious mental illnesses, such as self-harming. The common denominator was social media.
Social media has completely transformed the way we receive and process information. People are being diagnosed with conditions like ADHD not by medical professionals, but algorithms. Targeted advertisements by pharmaceutical companies have been found on TikTok promoting ADHD treatment to 'stop overeating'. Telehealth company Cerebral spent over $14 million on TikTok ads in 5 months last year. Approximately half of ADHD content on TikTok was found to be misleading.
As a society, we're collectively expected to do more and more, but we're not being given any additional time to do this with. We get hundreds of messages every day, and are expected to reply to all of them, whilst maintaining a picture-perfect life online. In the meantime, we're being brainwashed by companies hijacking our attention, offering us an 'explanation' as to why we can't stop scrolling.
Overall, the mass information on social media is neither good nor bad: it's simply there. If our healthcare systems were adequate enough to keep up, it would be very helpful - but they're not. 7 year waiting lists for assessments means that capitalism naturally fills in the gaps, with online quizzes and 30 minute assessments costing thousands of pounds. The internet is a Wild West of exploitation, with zero enforceable regulation and laws seeking to silence free speech instead of fix the underlying issues.
Social media makes us more 'connected' than ever before, but also more lonely than we've ever been. Finding out you have ADHD can connect you to a global community of people who understand you - which is great, but also has contributed to exploitation.
Forbes: Instagram Pulls Ads By Mental Health Startup Cerebral For Violating Its Rules
The awareness that has come with me writing ADHD: an A to Z and setting up ADHD Works has given me a duty to help people and speak the truth, even if it's not 'profitable' for me to do so. I am uncomfortable with the idea of promoting ADHD to people who do not have it.
Being part of the solution means having hard conversations.
The upcoming Panorama episode will doubtlessly be causing a lot of people severe anxiety in anticipating further news headlines decrying ADHD as 'not real' and invalidating their experiences and diagnosis' they've fought so hard to get.
However, it's an extremely important and necessary conversation to be happening within our society. If anyone can be diagnosed with ADHD, this in itself invalidates the experiences of people who most need help.
Remember that nobody can invalidate your experiences but you.
ADHD Works has grown at a rapid pace as I try to help as many people as possible, which has seen me receive very negative messages in response. These do not particularly affect me, because I know why I do what I do: to help people, which is what it's doing.
I've never pretended to be anything other than what I am, and never set out to sell anybody a 'fix' to ADHD, because you do not need to be fixed. Having ADHD can disorder your life, but things don't have to stay that way.
I know that regardless of stigma or headlines, my experiences are real, because I've lived them and continue to do so every single day. You are no different. Being diagnosed with ADHD by a 'scam' company does not invalidate your experiences: only you get to decide that, and most importantly, what you do next.
To deal with the anxiety around these conversations: welcome them. Educate yourself and stand up for your experiences. Empower yourself by engaging in debate that can create change: use your voice.
But choose wisely. Limit your exposure to attention-seeking headlines and social media posts, and ensure you have support in place to process the very valid emotions that may arise from difficult experiences like this.
The only thing we can control in life is our reaction to it: so you might as well make it work for you.
Watch: Women & Girls with ADHD - Sky News
The fact is that there is an ADHD Scandal, and until action is taken to fix these issues by:
updating the ADHD diagnostic criteria to be fit for 2023
training and regulating medical professionals diagnosing ADHD
having global conversations as a society about this
We will all continue to be potential victims, invalidating our own experiences, and paying money in search of the answer.
Don't keep your head down. I encourage you to watch the Panorama episode, and talk about it. If you are one of the people diagnosed by the companies in it, share your experiences if you feel comfortable to do so: it doesn't make them any less valid. Shame is what keeps us silenced, and you have nothing to be ashamed of. It is not your fault. Your experiences are valid, because you live them every day.