It’s my ambition to build, in Merseyside, the world’s first assessment centre where biometric technology is used to help people with autism.
Trials of the technology – the first of their kind in this country and the first in a residential care setting anywhere – will start this spring at Autism Together’s Raby Hall care home in Wirral. A £2.5m public appeal to raise funds for the project, and the planned high-tech building that will house this technology, will launch at the same time.
My passion for this project is based on 26 years’ experience of working with people with severe autism, starting as a house parent at a residential school. I’ve learned that aggressive or challenging behaviour is always a form of communication, often indicating stress and anxiety.
Over the years, my colleagues and I did what we could to try to understand the reasons behind such behaviour; because the individual was unable to tell us what was wrong, it was often a process of trial and error. We tried changing meal times, the staff on duty, the colour of our jumpers, the temperature of the rooms and our communication styles. Sometimes things would work but, more often, they wouldn’t.
We knew that unless the causes of these behaviours could be established, they would escalate and might result in the person being taken to hospital for their own safety and assessments.
Typically, we found that behaviour would stabilise in hospital and individuals would be discharged back into their communities. But because the symptoms were being addressed and not the cause, the triggers remained. Almost inevitably, they’d end up back in hospital – sometimes becoming marooned there.
NHS figures from late 2017 show that a third of people with a learning disability or autism in hospital had been there for two years or more. The National Autistic Society’s Transforming Care: our stories report revealed a lack of staff trained in autism in some inpatient units and community services in England. And research by Public Health England found that one in six people with a learning disability or autism were being prescribed unnecessary antipsychotic or antidepressant drugs by their GP.
A few years ago, a colleague introduced me to Dr Matthew Goodwin, a scientist from Northeastern University in Boston who investigates wearable biometric technology. At a New York school, lightweight wristbands were being used to “see inside” the bodies of non-verbal young people on the spectrum.
Biometric sensors can monitor, in real time, changes in surface skin temperature, sweat, heart rate and limb movements. All these minute changes, taken together, can indicate growing anxiety.
Data collected by Goodwin and his colleagues clearly established how physiological changes could predict impending meltdowns. Subsequent research – due to be published in May – by Goodwin and a team from Northeastern University, Maine Medical Centre and the University of Pittsburgh has established that tiny physiological signs that point to oncoming aggression can be picked up a minute before a meltdown.
This technology could help people with autism, their families, support workers and clinicians. We can work with non-linguistic autistic people to identify the causes of increased anxiety and help establish what reduces it. We can identify what causes sleep disturbance (a common feature in autism), assess individual needs, pre-empt challenging behaviours, reduce hospital crisis admissions and – potentially – make huge savings to the public purse.
In our trial, seven individuals with complex and challenging autism will wear the wristbands. Data collected will be cross-referenced with staff observations recording when and where each anxious episode occurred, taking account of light, heat, noise and proximity to others. Ultimately, the data for each individual will be analysed, creating a unique insight into their behaviour patterns, taking account of sensory stimuli that may influence their behaviour.
Our aim is to understand how the physical environment in which these individuals live influences their day-to-day life. This vital information will influence the design and build of all our future facilities.
My vision is that in 50 years’ time – or before – biometric technology will be a baseline for what’s considered good autism care. It’s time to apply 21st century technology to this problem. We’re letting the autism community down if we don’t.
- Robin Bush is chief executive of Autism Together
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