Inclusive innovation: the intersection of technology and neurodiversity
Last month the Department for Health and Social Care published its five-year suicide prevention strategy. For the first time, this included autistic people as a priority group for tailored action at a national level. While a positive step, this is long overdue: autistic people experience a much higher risk of self-harm and suicide than the general population.
Dr Louise Morpeth, CEO of Brain in Hand
But will this strategy really be enough? Is there actually the necessary targeted support, funding, and resources available?
It appears not. In a time of stubborn inflation and economic headwinds leading to tightening budgets, the NHS has – also last month – hit a hospital waiting list record of 7.7 million people, according to the BBC. This public health challenge of our generation is exacerbating inequalities and health outcomes for disadvantaged groups, including autistic and neurodivergent people.
When I wrote a piece quoting the number of people waiting for an autism assessment in May, it stood at 140,000. But the latest figures published by the NHS now put this at over 157,000 people – and it’s predicted to hit190,000 by 2024. Rather than plateauing, the list is increasing. Given that a recent study showed about a third of people are not diagnosed, this is a particularly urgent challenge.
Yet in this landscape of rocketing waiting lists and shocking outcomes, the combination of accessible digital tools and human support is proving to be incredibly beneficial to the autistic and neurodivergent community. As healthcare services head towards a cliff edge, this new approach to delivering support is helping to relieve pressures and improve health outcomes.
Shocking outcomes and a lack of adequate support
It is worth acknowledging here that, of course, autism is not the only kind of neurodivergence. We still need a better understanding of the many different neurotypes and how they overlap, and the outcomes and lack of support outlined here are experienced by a range of different groups. For example, people with ADHD – who are very often also autistic – experience similar barriers to accessing diagnoses and support. They are also frequently attempting to access the same services, with many areas operating one joint autism and ADHD assessment and support service.
Our focus here is on autistic people because, at Brain in Hand, we have a wealth of expertise and research on autistic people in particular (and a high proportion of autistic colleagues). We also believe that making something work well for autistic people tends to make it work well for everyone.
Autistic people experience some of the worst health outcomes out of any demographic. Given research by the University of Cambridge last year showed “a significant number of people who died by suicide were likely autistic, but undiagnosed,” and the autism assessment list is rising, there is a pressing need to find other ways of delivering services. Key to this is providing pre-emptive and real-time support.
The majority of autistic people are highly likely to face day-to-day stressors such as anxiety and overwhelm. These are a contributing factor to the depressing statistic that only one in five autistic people are in employment. It’s demoralising because this doesn’t need to be the case - I know many more people could be in work with the right support.
With all this in mind, what support is actually available?
In short, the answer is “not much.” Autistic people struggle to access healthcare and support; another University of Cambridge study revealed that “autistic people self-reported lower quality healthcare than others across 50 out of 51 items on the survey.” More research is needed into the reasons why autistic people struggle to receive adequate healthcare. But a key part of it is accessibility to appropriate services and support that is tailored to their needs.
Can a combination of digital and human support help?
As healthcare services struggle to meet patient demand, a combination of digital and human support is helping to benefit the autistic and neurodivergent community as well as alleviate healthcare pressures. But what exactly is this support?
Rather than prioritising technology over human support, our aim at Brain in Hand is to find optimal ways of combining the two. Users can access simple digital support tools on their phones, for example, to keep track of personalised routines, receive reminders, and access resources to help manage anxiety, overwhelm or unexpected situations. These apps then also act as a link to 24/7, on-demand human support. From the outset, users are paired with coaches who help to address their specific needs, building structured routines and coping strategies alongside anticipating any challenges.
This approach is particularly effective for supporting autistic and neurodivergent people – more so than traditional ways of delivering support. It can take advantage of the best aspects of technology and of human interaction: an app can remind someone to take their headphones to the supermarket to manage overwhelm, or a coach can talk them through strategies to deal with anxiety in a social situation. It lets people take control and choose the right support for them at the right time.
Providing this service aims to pre-empt more dangerous situations that could arise further down the line without it. And not only can the technology offer this support, but by learning from its data, there is potential for it to anticipate future challenges.
How inclusive innovation with tech can lead the way
Now that smartphone ownership is pretty much the norm (98% of 18- to 25-year-olds have a smart phone), we could fall into the trap of assuming this makes it inclusive. If everyone has a phone, surely that means no-one is left out? Not quite – overlooking wider accessibility considerations can swiftly exclude many who could benefit. What happens if your app requires large amounts of data to function, or only works on the latest versions of phones, or has poor colour contrast and font size? You exclude potential users.
If you involve the people who are ultimately going to use your product or service in its creation, these mistakes can be avoided. I am a big fan of co-production – at Brain in Hand we involve users in every stage of design and development, from the initial idea through to prototyping and testing. We have a user panel and a co-production lead who are empowered to give candid feedback, which we then act on.
In our experience, if we design well for neurodivergent users, we also serve our neurotypical users well. But it doesn’t work the other way around.
Piecing together a broken system
There is an urgent need to re-imagine health and social care services – a future that embraces the potential of technology and actually empowers citizens to access personalised care and support. A smart combination of human and digital support will be one part of the future landscape. At Brain in Hand, we are demonstrating that it is possible to create a human digital experience. Our users value having both an empathetic human coach – someone who listens and works with them to co-produce solutions bespoke to their needs – and tools for self-management and in-the-moment support accessed through technology.
Autistic and neurodivergent people deserve far better support and greater opportunities. Why shouldn’t we embrace technology as a means to achieve this?