From HANDS to Pokémon Go: How Mobile Phones Help People With Autism
Brought to you by the #NewNormal, O2's mission to question, explore and understand how mobile is changing the way we act and interact as humans.
Brought to you by the #NewNormal, O2's mission to question, explore and understand how mobile is changing the way we act and interact as humans. Read more #NewNormal stories here.
We've all heard our grandparents' refrain that mobile phones are transforming us into lifeless automatons – heads down, engrossed in a selfish, glowing world. We've also probably thought, now and again, that they're right: when you're lying in bed, hours after you should've gone to sleep, staring sideways at a screen and swiping through meaningless 10-second videos, it's hard not to question the value of phones being everywhere. That's why it's heartening and instructive to learn that this new normal – the idea that phones are so embedded in our lives that 12% of us are happy to describe them as "an extra limb" – is also helping people make a positive difference to their lives, specifically children living with autism spectrum disorder (ASD).
There's a lot of misinformation about autism so it's worth getting clear about what it is before seeing how mobile phone technology has been used to alleviate its symptoms. ASD is not about being a "genius", a "savant", an "obsessive" or any other stereotype. It's a complex developmental condition that affects people in different ways and on a wide spectrum. There are, however, some common themes that unite people across the spectrum: people with ASD often have difficulty with communication, verbal and non-verbal, and an inability to recognise social rules, making engaging with other people in a way considered "normal" difficult or impossible. According to Kristie Asaro-Saddler and Diana Akhmedjanova, characteristics of people with ASD also include also a tendency for "minimal eye contact", a difficulty "following spoken directives", and "a difficulty understanding that others believe in ways different from their own." In other words, it can be an extremely debilitating condition – one that requires support and guidance so people can carry out basic social and life skills that most people take for granted.
It's precisely because of the nature of these characteristics – which are fundamentally about communication with other people – that mobile phone technology can play a useful role. Firstly, ASD people often learn best through visual stimuli, because they can find processing written information difficult. So the visual nature of communication apps on phones – there are many speech-generating ones for people to articulate simple sentences – is a plus. Moreover, because every phone can be visually customised, they help express the individuality of each user. Secondly, mobile phones, like technology in general, are "non-judgmental", meaning people with ASD can absorb directives from it – like, "Say Good Morning" or "It's time to leave the house now" – more easily than from a person in a position of authority. Thirdly, whereas ASD people used to be encouraged to use picture cards to convey information, which used to be quite embarrassing in public, there's no stigmatising effect from using mobile phones to do so – it's the #newnormal, after all.
One of the earliest initiatives that sought to harness mobile phones to help people with ASD was the "HANDS project", which was developed at the University of Northampton in 2009. HANDS stands for "Helping Autism/Diagnosed to Navigate and Develop Socially", and that's exactly what the project set out to do. Its phone applications included a "persuasive diary" – an interactive calendar that helped structure the user's day but also provided "persuasive" encouragement to adopt a new behaviour or attitude depending on the situation; and a "Simple Safe-Success Instructor", which gave "precise and practical" advice on how to navigate certain life skills like travelling on public transportation. This could all be customised by the user and monitored by parents, teacher or carers so they could track the progress of the person with ASD.
Dr. Joseph Mintz, now a Senior Lecturer at UCL's Institution of Education, was one of the creators of HANDS, and he's optimistic about how the project was received and how the technology's improved since. "The two domains we were looking at with HANDS were social skills function, things like understanding how to act in social contexts, and life skills functioning, like being able to go on the bus or make a piece of toast," he tells me. "There was quite good evidence that it made a difference overall. But the technology's improved a lot since, especially around using video and in terms of facilitating communication – where the phone links the user to a support worker either orally or by sending a message on the device."
One of the best developments of the work done by Mintz and colleagues on HANDS is the 'Brain in Hand' application, he tells me, which is used by the NHS Trust in Devonshire. Following the example of HANDS, Brain in Hand creates software designed to assist "independent living". Basically, you add your diary to the Brain in Hand website and it appears on your smartphone via the app. The diary includes not just appointments and events but possible problems that might arise during the day and solutions to those problems – eg You have a history lecture to attend at 11am; a potential problem will be forgetting your books; a solution might be asking to share with another classmate. It also has an excellent "traffic light" feature, which involves pressing a green light if everything's going OK; an amber light if things are getting a bit tricky; and a red light if thing are going badly. If you press the red light – or amber three times – you'll get a direct phone call from your mentor, who can survey your diary to see what's going on.
Despite the inspiring work of these purpose-built mobile phone initiatives, another phone-based app has been getting credit to helping people with autism recently: Pokémon Go. According to a recent report by BBC News, the game – which has been taking over the world – has had the unintended consequence of encouraging people with autism to go out in public when they would've normally stayed inside.
The report follows a 17-year old with severe ASD called Adam, who has preferred to stay indoor for the past five years and has suffered many anxiety attacks. All of a sudden he's started wanting to go out every day after school to the park to catch Pokémon. According to his mum, having the option to play with him outside has helped "reinstate that mum-and-son bond" and she hasn't seen her son "this relaxed and happy in a public place for so long."
Hearing about these beneficial side effects of Pokémon Go, Dr. Mintz is cautiously optimistic. "I think it's great that it seems to be having a positive effect. That's something to be celebrated," he tells me. "But whether it's going to have any broader impact I'd be quite doubtful about. There are many apps on the market and we don't see much evidence that anything comes from them usually – there are a lot of anecdotes but not much evidence. That's not to say that [Pokémon Go] couldn't be one."
"The interesting thing it brings up is around augmented reality – how overlaying information onto the phone could help with navigation. It would be interesting to look into this," he adds.
You could wonder whether going out into a park, absorbed in your phone and catching Pokémon simply reproduces the isolation of being at home; also, unlike HANDS or Brain in Hands, Pokémon Go is a commercial product, replete with advertising, that doesn't have the public health interests of people with autism at heart. Could this be a problem?
"There are two criticisms you could make," Dr. Mintz tells me. "One is about obsession – we do know that people with autism sometimes have a propensity for obsessional behaviour. However, in the work we did on the HANDS project it was rarely a significant factor."
"As for commercialisation... in a perfect world all this technology would be developed and distributed with money coming out of nowhere. But in the world we live in, things need money – my view is that as long as it's ethically guided and the companies involved are appropriate and have the right attitude, commercialisation is not in itself a bad thing."
Ultimately, these mobile phone technologies that help people with autism are there to foster independence. They're not an end-in-themselves – although for some people with severe ASD, they will be – but "a stepping stone to increased independence". So although for most of us the omnipresence of phones in our personal and social lives might seem debilitating at times, it's worth remembering that for people with ASD, the new normal can be a vital source of guidance.
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