July 8, 2021

What is ADHD?

Ben Pollard, Founder and CEO

Firstly, let’s be clear about what ADHD is, and isn’t. It isn’t an overdiagnosed excuse for naughty white boys, but it is a neurodevelopmental condition that impacts literally every area of life for around 8% of humans. Yes, humans, all the humans. Every creed, colour, and gender of us. 

Unfortunately, the symptoms of ADHD usually have a severe impact on a person’s mental health. For example, 80% of adults with ADHD also have a further mental health condition, including anxiety disorders, depression and addiction.  

I have ADHD, and I’m lucky to have had only one bout of depression in my early twenties, but I’m also very dyslexic and the combination can create some complex challenges. My brain is basically like a double helix of badly spelled distractions that often leave me frustrated, confused and taken down cul-de-sacs I didn't really choose. 

Here are a couple of live examples:

If I was speaking to you now, I could have said the phrase, 'cul-de-sacs I didn't really choose', but I'm so dyslexic that I often can't spell things with even enough vague proximity to their codified encrypted reality for spell checkers to be of any use at all. Using a spellchecker usually feels like my phone or laptop is giving me a blank, confused, slightly pitying stare. I'm convinced that any day now Siri will spontaneously declare, "Ok, that's enough. You just need to stop. It's over. I quit. Go and ask Alexa!" 

Ok, so that's how dyslexia works, but what about ADHD?

Well, while Siri and Alexa are both rolling their eyes at me, the ADHD strand of my cerebral double helix is trying to derail me with distractions. You see, I really can't spell, but I learnt long ago that the google algorithms are far more forgiving than any spell checker. When you type in a word, however surreal your spelling attempt, google will compassionately suggest an alternative, and it’s usually the thing I’m trying to spell. So, I copy, then paste and search. So far, so good, I hear you say. What’s the problem? 

Well, the problem with googling a word just to know how to spell it, is that the internet will then tell you things about the word you've googled. Things that my ADHD brain can't resist. Rabbit warrens of fascinating facts for my rabbit like brain to burrow into. By the time I come back up for air, I now know that cul-de-sac is derived from the latin cul, meaning bottom, and sac, the french word for sack. It basically means bumbag.

All I wanted to do was find out how to spell it, but then suddenly it’s 11:38pm and I’ve lost track of time, again. Like I said, cul-de-sac.

Systemic inequities

I hope this is even slightly amusing to read, but it’s not always such fun to live. Every day. All of them. Including Sundays when you just want to switch it off and be normal for a bit. It’s exhausting. 

It’s hard enough for a privileged white guy like me, with plenty of crutches to lean on. It becomes a serious justice issue when we realise that in a place like Lambeth, where we’re based, over 90% of the young people diagnosed and supported with ADHD are white and male, yet the population in Lambeth is less than 50% male, and less than 50% white.  

We know that: “...adolescence is a risk period when mental health problems may become more complex and serious disorders emerge.” - Young et al. BMC Psychiatry (2016).

Young people with ADHD, irrespective of race or gender inequalities, are more likely to experience economic disadvantage and more likely to be financially dependent on parents, not in education, reliant on loans, or in low-paid work or on benefits. 

If you have ADHD and you’re a woman or a person of colour, then the challenges you face may well be masked by the pressure on women to conform to social norms, or stereotyped by blinding institutional racism and unconscious bias if, like most people in Lambeth, your skin isn’t whiter than Matt Hancock’s ankles. I’m sorry, that was probably an unpleasant image to conjure. You may want to put on some Chaka Khan and shake it out in the kitchen for a minute. I’ll be right here when you get back. 

ADHD Together

Ok, feeling better? Let’s get back to it. So, what is ADHD Together?

ADHD Together is an online peer support group where people with ADHD can connect, learn from each other's experiences and thrive together with their condition. 

ADHD Together sessions take place in a video chat room and are led by a leader with ADHD who guides 6-10 people (members) through a series of questions designed to help them gain insight into their condition, and set positive intentions for the week ahead. They’ve been designed with ADHD in mind and have key features like a visual timer so people know how long they have left to answer a question. 

I’ve also trained as an ADHD coach over the last five years, so it’s been really rewarding to try and embed some of this learning into how the sessions are structured. Even despite my own professional qualifications, it’s still often a joyful surprise how helpful the sessions are for me personally. As one small example, we’ve recently integrated a discussion section into the ritual, to allow themes to emerge. One theme that keeps coming back is how much people with ADHD struggle with sleep. I knew this in my head, but it’s so profound to see and hear your own experiences echoed and mirrored back to you by strangers you might otherwise never meet, and would certainly not trust with the details of your personal challenges. This is some of the magic that has somehow translated from our meals, those moments when strangers find themselves, often to their own surprise, connecting deeply and quickly with other humans they might otherwise have judged, feared, or held prejudices against. I’m one of those strangers, and even though these were the impacts I designed for, the profundity of the experience itself still often catches me off guard.  

Research partnerships

In August we are kicking off a new partnership with South London and Maudsley (SLaM) NHS Trust and King’s College London (KCL) to research and improve how ADHD Together helps people to manage their ADHD symptoms and engage with NHS treatment so they can live more fulfilling lives. We want to monitor, measure and evaluate these positive outcomes for young

adults in Lambeth so we can map, understand and influence the systems that perpetuate health and social inequalities, and use what we learn to scale our service nationally and give more people with ADHD the support they need to thrive. 

We’ve started with ADHD, because it’s a real challenge that needs highlighting and transforming through systemic design approaches, but we’ve also chosen to focus on ADHD because lived experience is a design advantage. . 

Hopeful futures

After four and half years we had built a community of several thousand members, with over one hundred leaders, running weekend community meals in 8 cities across the UK. We’re incredibly proud of the things we’ve achieved, and learned, the teams we’ve built; teams of staff, freelancers and trustees, and the teams of amazing leaders and members in all four nations of the UK. 

Covid may have stopped us cooking together for now, but it’s also shown us how much people want and need to connect with others, to share experiences that build community, reduce fear and prejudice, and make the common good feel not just possible but essential, tangible, perhaps even urgent. 

If we can grow our ADHD groups, and learn to operate at scale again, there are also more exciting opportunities ahead. The Maudsley clinicians are keen to help us adapt our model to support people on the autistic spectrum, and in a similar way, I’m keen to explore with them how we might develop peer support groups for people with PTSD. 

PTSD has impacted my family a great deal, and I know how challenging and complex it can be. It’s also tragically, but unsurprisingly common among people seeking sanctuary because many have fled unimaginable violence that their brains force them to constantly reimagine and relive every day. There are also thousands of NHS staff, and thousands of Covid survivors suffering from the impacts of PTSD from the traumas of surviving a devastating pandemic. 

These are more extreme examples of the ways we might adapt our work in the years ahead, but whatever happens, the core, our vision and values will remain the same. Whatever the future holds, we’ll always be committed to building, and belonging to, diverse, resilient and powerful communities, acting together for their common good.