Insights by Phil Anderton, Managing Director, ADHD 360, in conversation with Sophie Copley, Co-Founder and CPO, Little Journey at HIMSS 23
Whilst attending the HIMSS 2023 Conference in Chicago, as part of The LEGO Foundation's Play for All Accelerator, Sophie Copley, Little Journey’s Co-Founder and CPO, spoke to ADHD 360’s Managing Director, Phil Anderton. They discussed the importance of advocacy, play, and accessibility for children with ADHD.
The flippant answer is because they can’t do it for themselves. One of the things we’ve always said is don’t expect someone with ADHD to advocate for someone with ADHD, because it is a really tough ask. Interestingly, when autistic people run a support organisation, they have rigidity, attention to detail, and can advocate really well, but people with ADHD struggle to regulate emotion and stay organised, so they often can’t advocate as easily.
Advocacy is a hugely important part of what we do on behalf of our patient group, working with their schools, social services, and GPs to eliminate misunderstanding of ADHD.
We are also heavily involved in the criminal justice system with a lot of our patients, advocating for the rationale for them doing something wrong, without it being an excuse. In 2007, I wrote a book on ADHD in criminal justice, with a guide for courts on how to run court for someone with ADHD and how to look after a prisoner with ADHD in the police custody system. People with ADHD are truly afforded legislative interventions to help them, but it’s ignored a lot and not recognised enough.
20 years ago, most media tried to dispel the fact that ADHD even existed, and certain newspapers were vociferous about that, but now we’ve got some positive media stories coming out. On behalf of ADHD 360, I do a lot of positive media work, such as my recent work with Loose Women on a piece that was so important for women with ADHD.
On our website we publish a lot of ‘easy-to-read’ papers to try and educate people; individuals can take them to their school, teacher, or boss, and just say, “Read this”.
"Giving people the tools to share that information and open doors, without having to word it themselves, is so useful."
"I think the biggest challenge any child with ADHD faces, is not being understood, and not having the emotional base to understand why."
Children with ADHD may ask themselves, “Why is this more difficult for me? Why am I blurting out these answers and getting told off for it? Why am I not being invited to sleepovers or to go tenpin bowling with my chums?”. Furthermore, many children with ADHD are academically bright, but they are not able to capture that in our current academic setting. Whether you’re a fish, a giraffe, or a monkey, everyone is expected to get to the top of the tree at the same time, but the fish is going to struggle. You’re being set a challenge that’s impossible for you, and that’s heart-breaking for children like that.
I think the biggest challenge in healthcare is the inappropriate funding and waiting lists. I understand that, strategically, the battle for funds in the NHS is constant, and I empathise with anyone who must decide whether to use the budget they’ve got for a hospital trust for cancer treatment or children with ADHD. However, a child in this position is never going to be able to live their best life. For example, if a 12-year-old child who might have ADHD is told they have to wait three years, by the time they get their first appointment they’re going to be so far into their GCSEs and not achieving their potential.
Freedom of expression. Unbridged, unregulated, and creative activity, with instant results, because people with ADHD need gratification quickly. Something that doesn’t have a rule book and allows their creative juices to flow. For example, given we’re in this LEGO environment, if I give any child with ADHD, who is struggling to focus, a stack of LEGO, they’ll get on with it and enjoy themselves. It’s not just LEGO but that’s the kind of play people with ADHD really enjoy.
"And there’s no right or wrong. If you want to make a house with pink windows that are on the roof, then go for it!"
Wow, that’s a great question because I like the product, and I’m not just saying that. I think I’d like to work with you guys to promote this product in the neurodiverse community, especially the gamification features. Gamification of serious anxiety-inducing processes, such as the period you spend waiting for an ADHD assessment. By providing information and showing children what is going to happen, stress and tension will be reduced. Most kids actually enjoy their assessment, but they don’t on the run up to it. Let’s make it something they can look forward to and not be fearful of.
The main thing patients tell me is that they are worried they don’t have ADHD, because then they wonder what is wrong with them.
That was Loose Women Panellist, Nadia Sawalha’s, biggest fear. She said to her husband on camera, “What if I haven’t got it? What the hell is going on?”. I’d never thought of that before. As a child or adult with lots of impairments and challenges, somebody introducing the possibility that your struggles are caused by ADHD, a manageable and treatable condition, brings them hope. Yet, they are fearful that somebody might snatch that away from them; that hope might disappear. So, we need to remove that anxiety of “What if it’s not ADHD?” because if you’ve got that far, it’s likely to be.
Since this interview, Little Journey has launched it's Accessibility Centre of Excellence, an initiative prioritising inclusivity across our product offering, with a focus on improving accessibility for neurodivergent children and users with disabilities.
For more on Little Journey’s commitment to accessibility and inclusion, visit our Accessibility Hub.
ADHD is 5% of the population which is a large amount of people. As a society we’re becoming more aware of it and becoming more geared up to help people. Therefore, the fact that ADHD is seemingly more prevalent shouldn’t be seen as a negative; we should see this as a huge positive. Many of us have worked in this arena for 20+ years, and we’re now seeing the results of the seeds that we sewed 20 years ago to try and change culture. My specialism, at first, was in the criminal justice system; 25% of the prison population have ADHD and that 5% compared to the 25% is my rationale for doing this work. People should be in health, not in justice, and we’ve still got a lot to do.
This interview has been edited for length and clarity.
ADHD 360 is the UK’s largest single-specialist ADHD clinic. The company provides ADHD assessment, diagnosis, and treatment, working both privately and for the NHS. We are proud to say that we already have many stories of lives we’ve changed for the better.
Little Journey is part of The LEGO Foundation’s Play for All Accelerator, a collaboration aiming to make our app accessible to autistic children and children with ADHD. We are working on advocating for the neurodivergent community by highlighting amazing organisations and charities in this space, and partnering with them to improve our product and services so we can provide for all.
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