Autism Together has launched a £2.5m appeal to fund a high-tech project with the potential to transform the care of people with severe autism.
The charity, which specialises in the care of people with extremely complex autism, plans to build a world-first autism assessment and diagnostic centre using biometric technology to help understand what people are feeling and how they respond.
Biometric technology measures minute physiological changes such as skin surface temperature, heart rate, sweating and three-dimensional limb movements, like repetitive movements, which can indicate stress.
The use of biometrics in autism has been studied over the last decade by a team of US scientists from Boston’s Northeastern University, Maine Medical Centre and the University of Pittsburgh. Having developed biometric wristbands, they collected thousands of examples of challenging behaviour from 20 young people with autism, showing that changes in body signals may be able to predict rapid mood changes.
The lightweight biometric wristbands can be worn by people who may be unable to communicate how they feel. Realtime readings help to identify periods of high anxiety in a person, enabling them to step in and support them before the anxiety escalates.
Trialling the technology
This spring, Autism Together intends to trial the biometric wristbands with seven residents at one of its care homes in Wirral. Information on anxiety levels collected by the wristbands will be cross-referenced with detailed staff notes on the dates, times and locations of behaviour changes and extreme incidents. Staff will note levels of heat, noise and light in each situation – such as loud TVs, bright sunlight or hot radiators – and merge this data with biometric readings to understand how people are reacting to sensory stimuli.
Jane Carolan, Director of Client Services at Autism Together explained why they decided to use biometrics in this way. ‘We had a number of individuals in residence who we were responding to, rather than understanding. We were being reactive not proactive. We realised that if we could get to know how people were feeling, and what was causing them to feel anxious on a physiological level, that would cut out a lot of the unknown. It would help us put in better support.’
Diagnosis and assessment unit
Beyond the trial, and use of biometrics for people with autism, the charity also wants to build a state-of-the-art diagnostic and assessment unit using the technology.
Jane continued, ‘We’ve seen first-hand how individuals with complex autism are often let down at NHS assessment and treatment units. They’re designed to be a port in the storm to those in crisis but are often unable to get to grips with extremely complex cases. People get marooned in these units – sometimes for two or three years. It’s a desperate situation which helps no-one, and we’re determined that 21st century science should help our healthcare system do better. If we can prove this technology now, we’ll be helping future generations have better lives.’
Autism Together’s Future 50 appeal and building project will see its original residential home, Raby Hall in Wirral replaced with an autism-specific building. Based over three floors, the top two floors will offer accommodation for 12 individuals and the ground floor will include consulting and therapy rooms.
It will be an in-patient assessment and treatment unit and out-patient diagnostic centre. The staff team will include community psychiatric and clinical nurses along with highly-trained autism support workers.
Jane explained, ‘Our assessment unit will be a short-term service. People will be referred through their clinical commissioning group or the clinical route. To get a true understanding of an individual and then put in autism strategies and support packages will take around two months. Then we’ll offer a passport for each person showing their person-centred strategies, such as “this is how best to support me” and “this is what I need from my environment”. This should take them back to their normal environment.
‘We feel that commissioners won’t want people to remain indefinitely in our care as it would unbalance local provision and budgets. Assuming an individual has to travel from out of area into our assessment service (and this is likely to happen, as we’ll be providing such a highly-specialised provision), then it is better for them and their families if the step-down element happens back in their home town.
‘Having said that, a temporary step down within the assessment facility is possible. People, for example, could be supported to have more say in their lives in order to build them up ready for the transition back home.’
The project will roll out in a series of stages over five years. Each stage will be thoroughly evaluated and will start with trials at an existing service. Jane added, ‘We’ll then monitor their progress and try to understand what elements of the living environment work best for the people we support. It is at this point, with all this learning under our belt, that we’ll be able to start the big build of Raby Hall, which will become the assessment unit.
‘Our methodology must be painstaking. These individuals need to feel warm and secure. They need an environment that won’t impact on them negatively. We need to get to know them and to see how our autism approaches are able to support them. To do all this well, we will have extremely highly-trained autism support and clinical staff and a state-of-the-art, autism-specific building in which to work.’