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Biometrics and autism: wristband technology could transform service-users’ lives

Leading charity Autism Together has set up the UK’s first trial of wristbands measuring physiological changes to predict the onset of a ‘meltdown’ in someone with autism – and enable staff to take action to prevent it

Leading charity Autism Together has set up the UK’s first trial of wristbands measuring physiological changes to predict the onset of a ‘meltdown’ in someone with autism – and enable staff to take action to prevent it


Pictured: David Adamson with his parents. Picture courtesy of Raby Hall, Worcestershire

One of the many knock-on effects of the crisis in social care is an increasing number of adults with autism becoming ‘marooned’ in mental health hospitals, according to the charity Autism Together.

Cash-strapped local authorities are struggling to afford the care packages required to enable individuals with complex needs to live in the community.

‘Individuals with complex needs who have a crisis are ending up in hospital as there’s nowhere else for them to go’

Chief executive officer of Autism Together Robin Bush, calls it a ‘placement crisis’. But he thinks he may have come across a solution: biometrics.

The charity and service provider is setting up the UK’s first trial of wristbands measuring physiological changes that can predict the onset of a ‘meltdown’ in someone with autism and enable staff to take action to prevent it.

‘Significant project’

‘This is a significant project backed by a real sense of urgency as the numbers of those diagnosed with autism increase,' says Mr Bush.

‘Individuals with complex needs who have a crisis are ending up in hospital as there’s nowhere else for them to go.

1:100 UK

1:68 US

Proportion of the population on the autism spectrum 

(Autism Together 2018)

‘Their behaviour stabilises so they’re returned to the community. But the root cause has not been addressed and soon there’s another incident and they’re back in a long-stay psychiatric hospital.’

The Autism Together biometrics project aims to understand the causes behind behaviours that challenge. Seven residents at one of the charity’s care homes in the Wirral are testing the wristbands in an initial trial. The organisation is launching a £2.5m appeal to fund a new assessment and diagnostic centre where the technology will be tested further.

Trigger factors 


Robin Bush

Mr Bush, who started his career as a support worker, says biometrics ‘takes out the guess-work’ in reducing trigger factors for people with autism.

‘When clients have reacted you try and unpick what happened. You reduce the light or open a window and hope it’ll work.

‘But this technology gives you a much better insight. You can see an individual’s baseline readings and get an early warning of trouble ahead.

‘It’s all about reducing the causes rather than waiting for something to happen and then reacting.’

24,000

The number of people with learning disabilities or who have autism and are at risk of admission to hospital

(NHS England 2015)

Mr Bush says once staff know the specific triggers for anxiety in an individual they can support that person to avoid those triggers and enable them to live in the community.

The new assessment centre will replace the charity’s original residential home, Raby Hall in Bromborough, Wirral, which opened 50 years ago and is registered to accommodate up to 25 people. A new three-story building will have living accommodation on the top two floors and a ‘state-of-the-art’ diagnostic centre underneath.

‘It’s all about reducing the causes rather than waiting for something to happen and then reacting’

It will house up to 12 individuals with ‘exceptionally complex’ needs. They will live there for up to a year while staff work with them until they are ready for a step-down service at another unit on the site followed by a return to the community.

David’s story

David Adamson was diagnosed with autism aged nine. He’s now 34 and lives in a flat at Autism Together’s Raby Hall where he has 2:1 support during the day and 1:1 support (waking night staff) at night.

His mother Kim explains: ‘David has been doing a pre-trial of the biometric wristbands since last July. He’s a poor sleeper and often wakes with night terrors. Sometimes he’s so distressed he self-harms and he’s damaged his retina.

‘We hope the data from the wristband will help staff find out what triggers it and make changes so it doesn’t happen.

‘He didn’t wear a watch before so it took some getting used to. At first it wasn’t comfortable and he ripped it off. So staff sent it back to get a different  strap and he’s tolerated it long enough to get some readings.

‘It’s early days but we’re  excited for the future. This could help David - and many others like him who don’t have a voice – to fulfil their potential.’

 

Avoid placement breakdown cycle

Director of operations at Autism Together Jane Carolan says, anecdotally, staff know getting the environment right is key. ‘But the new assessment centre will help us devise a tailor-made strategy for each individual using data gathered. It will help avoid the cycle of placement breakdown.’

‘Correctly used, this technology is fantastic. It can identify patterns and flag up if someone is going to have a meltdown’

She recalls the case of one young man with autism who went through 15 placement breakdowns before staff found that painting his bedroom all the same colour – including ceiling, walls and door - reduced his anxiety and risky behaviour by 80%.

3,235

The number of people with a learning disability or autism who are inpatients in a psychiatric hospital for two years or more

(NHS Digital October 2017)

‘The more we know about an individual the more we can put a robust care plan in place to help them build up the confidence they need to live their life.

‘Correctly used, this technology is fantastic. It’s not intrusive like, for example, CCTV can be. But it can identify patterns, flag up if someone is going to have a meltdown and indicate how bad the incident is likely to be,' she says.

‘We’re also looking at monitoring people with epilepsy in this way. At the moment they have to have a staff member in the room when they have a bath in case of a seizure. The wristbands are waterproof so it means people can have a bath, safely, in private. It’s liberating’.

Robin Bush adds that in this 50th anniversary year for Autism Together the organisation is celebrating its past achievements, but also looking ahead to the future.

‘Our vision is to set the standard for a new generation of inpatient assessment and treatment using a high-tech approach. In 50 years’ time, biometrics will be accepted as a baseline for understanding autistic behaviour and it will play a key part in helping people with autism to live the best life possible’.

Pioneering wristband technology

Use of wristband technology for people with autism has been pioneered in America over the last decade by a team led by Matthew Goodwin, assistant professor, department of health sciences, Northeastern University in Boston, who has visited the UK to share his findings.

He describes his work as ‘trying to take the laboratory to the people rather than bringing the people to the laboratory.’

The lightweight wristband measure electrodermal activity - minute physiological changes, such as skin temperature, heart rate and sweating - as well as three dimensional movements of the arm. The data can be streamed in real time using Bluetooth technology.

 

 

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