I recently had the opportunity to speak at this year’s Autism Shows in London, Birmingham and Manchester, where I posed the question: is the autistic community benefitting from the potential of technology?
The short answer is: not yet, but there is a vast amount of potential and more that can be done to better support the community. Technology is proven to be incredibly beneficial to the autistic community, especially for the growing list of 140,000 people waiting for an autism assessment, predicted to reach 190,000 by 2024.
There’s a real need for support. So, I wanted to share some of my experiences and insights into how technology can help provide it.
Support issues begin in those crucial and formative years at school. Max is my son. He’s 22. And he is severely dyslexic. He had a pretty rubbish time all the way through school – it just was not set up for a dyslexic learner. What really frustrated me was the attitude of the school to technology.
Back then, teachers would give homework by writing on the whiteboard and have the kids make handwritten notes. If you’re dyslexic, you’ve got processing issues that make it hard to read it; you’ve got handwriting issues that make it hard to write it. And then you come home at night and you can’t read your own writing. You don’t do your homework and you get into trouble. So what do we do?
We suggested that Max was simply allowed to use his phone to take a photograph of the board. The school’s answer? “We don’t have phones in class.” So what did they do? They actually paid to have a teaching assistant in the classroom to help Max and other students write down the homework off the board. Stigmatising, not empowering, and expensive. It was so frustrating that the technology was there and students weren’t being allowed or empowered to use it.
This stance can sometimes be reflected in the public sector, be that with a local authority or NHS health care provider. It can feel like a nice-to-have option rather than positioning technology as the way forward. We need to put technology front and centre in how we reimagine services. In every local authority, there are record-level staff vacancies, and budgets are massively constrained. As such, we have to think differently about how services are going to be delivered. Technology is going to be fundamental.
The need for support
How many autistic people are there in England? Usual estimates put the figure between 700,000 and a million, a prevalence of around 1%. But a recent study published in The Lancet suggests it’s nearer 1.5 million people. The important part is that about a third of people are not diagnosed.
This matters. There is a depressingly high prevalence of suicide amongst the autistic population, and also a very high incidence of anxiety in autistic people. So it’s not just bad that people aren’t getting a diagnosis, it’s outrageous, because health outcomes are so much worse for autistic people than for people who aren’t autistic.
This contributes to the fact that only one in five autistic people are in employment. For me, that’s just a tragic loss of human potential. I know many more people could be in work with the right support.
A recent independent national study led by Professor Rohit Shankar at Plymouth University examined how the Brain in Hand support system can help people, particularly autistic people. A team from across several different universities and NHS trusts independently evaluated our work and found that what we do improves quality of life, reduces anxiety, and reduces self-injurious behaviour. Moreover, it signals the potential of technology to meet the support needs of autistic people.
So what is this support? In a nutshell, it involves finding the best ways of combining technology and human support, using simple digital tools that help with managing overwhelm, anxiety, and motivation. Users have personalised coping strategies and resources on their phones when they need them. Specialist coaches work with them to help identify challenges and develop solutions to overcome them; and when things are difficult, users have access to on-demand 24/7 human support at the click of a button.
Let me bring this to life with a couple of stories.
Real-life examples of how technology has helped the autistic community
Ian is a senior civil servant, and he is autistic. He struggles with managing stress and anxiety, which leads to insomnia. There was a risk that he was either going to have to leave his job or have periods out of work. So he was given digital support, helping him with planning and managing anxiety. His experience was that the right support could make the difference between being able to stay in work or needing time out. When he found a change of manager disorienting, he was able to use his digital support to work through it and continue bringing his talents to his job. This is what technology gave him.
And similarly, Remie, who had a late diagnosis and was managing an eating disorder. Her experience was that she was getting very overwhelmed, very burnt out, and struggling to establish routines. She has now been able to get back into work. She credits simple technology that was personalised to her, her needs, and the challenges she was encountering. This is technology that’s helping people overcome barriers in society that stop them getting into education, getting into work and living independently.
There are lots of other products emerging using technology to help us. Headspace, for example, can teach us how to meditate, and Kooth is online therapy. The more solutions like this, the better – as long as they are safe and effective (which is why I think robust research is so important). But there aren’t many that have been designed with autistic people in mind. Again, this matters.
If you’re not designing a product with your end user in mind, you can’t be confident that it’s going to really work for them. It’s why I vouch so strongly for co-production, a process where you actively involve the end user in building the product. That way, the autistic voice is represented in all elements of the design process, from initial idea, through to prototyping and testing.
Future innovations and potential
What about the future of technology? We’re trying to find that optimal mix between technology and the human. What is it that only humans can do? And what is it that technology can do best?
I am a big fan of Starling Bank – they claim to provide a completely human experience to banking. Despite never having spoken to or even interacted with a representative of the bank, I wholeheartedly agree. They have attended to the needs of the user so carefully that they have designed an experience that is delivered optimally by technology alone.
In contrast, there are some experiences where I don’t think technology will ever replace a human – I am not ready to have my pint at the pub poured by a robot. In the same way, I believe autistic people will always value an empathetic coach who listens, understands, and has that special talent to coproduce helpful solutions to users’ problems.
ChatGPT, AI, we’re hearing about it everywhere. It could help us with much more intelligent chatbot functionality. If someone is thinking, “do I want to talk to someone? Or do I want to go online?”, an intelligent and carefully monitored chatbot can give them the answer they need really quickly.
The other thing that’s cropping up a lot is the use of wearables. Apple’s recent upgrade offers monitoring of our mood and our anxiety. It won’t be long before we’ll be able to get prompted that we might be starting to feel anxious. We can then anticipate difficulties rather than waiting to become anxious and having to deal with it in the moment. These wearables have great possibilities.
The future is exciting. It is also daunting. We think about all the conversations going on around AI, data storage, and data breaches. But if we can harness the positives, there’s huge potential for us and for the autistic community. That’s where the fire in my belly comes from, doing what I do. I feel there is this massive potential in the everyday technology we carry around with us to improve things for everyone and achieve a better quality of life. We’re not there yet, but we can be.
By Dr Louise Morpeth, CEO of Brain in Hand
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