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Breaking boundaries – biometrics in autism support

Autism Together is developing a ‘world-first’ autism assessment and diagnostic centre which will use biometric technology to support people with autism.

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 future

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.’

Over to the experts…
What are your thoughts on the use of biometrics in autism support? Is Autism Together breaking new ground with its trial and planned diagnostic and assessment centre? Could it change the approach to autism support in the future?
Further research needs to be made

We need to know more about this new technology.

Maybe it should be talked about and shown at a big exhibition on technology. Its uses around learning disability and autism should be explained clearly.

People with learning disabilities/autism and their families, friends and organisations need to know about the technology.

People might be wary about technology being used for assessment – my concern is it might be used in the wrong way and read people’s minds, are they thinking good thoughts or bad thoughts, a bit like a lie detector?

It shouldn’t be the only way of assessing people – talking to people’s families and friends is really important as they are the ones who know the person best.

However, it’s a new way of trying to understand people with autism and could have good benefits for some people.

I am all for technology if it is going to improve lives and is for a good reason.

Some human beings need some positive stress in their lives.

Communication can be used through touch-screen computers and so on, and all other technology should be looked at.

Further research needs to be made on all types of technology. We must keep people with learning disabilities/autism, and their families, friends and other organisations informed. Everyone needs to know more about all types of technology out there.

And there is a cost to all this, who is going to pay for it? We know a lot of people cannot afford expensive technology. Will everybody who needs it be able to use it, or will it only be for the people that can pay for it themselves?

Gary Bourlet, Co-Founder, Learning Disability England 

These trials are indeed ground-breaking

In the 1980s and 1990s, one of the few pieces of technology available for use as a form of biometric testing was a galvanic skin response monitor.

Getting someone with autism to use such a ‘clunky’ machine was very difficult. Its use was limited to attempting to get people to relax and slow their respiratory rate through auditory feedback.

However, in this instance with the use of more modern biometric technology, having real-time feedback that provides multiple dimensions of anxiety measurement can only be an aid to understanding and predicting likely behaviour in people with an autism spectrum condition.

The difficulty – as always – will be in the quality and consistency of the staff data collection for cross-referencing with the biometric data. That said, it may be possible to limit this through the use of alternative technology, for example, objective temperature gauges in the environment and decibel monitors, etc. Explicit monitoring guidelines could also be used to minimise the difficulties, so it will be interesting to examine the methodology adopted in this pilot.

From a positive behaviour support perspective, having this information could be invaluable in providing antecedent control strategies. As a result, it could help to minimise the chances of anxiety-based behaviour occurring, which has often led to individuals being admitted to traditional assessment and treatment units.
These trials are indeed ground-breaking and successful outcomes from the diagnostic and assessment centre could provide a new model for both assessing people on the autistic spectrum and in models of support for people in the community.

Dave Jackson, Group Director of Operations, Choice Support 

Technology feels like a tantalising solution

For many autistic people, understanding and communicating anxiety can be a challenge. Care staff can struggle to understand when an autistic person is anxious, or intuitively understand autistic behaviour and separate that from issues like anxiety or pain.

In people who are minimally verbal with complex needs, the challenge is particularly stark. Our research priority-setting exercise with the autism community showed mental health, issues with language and challenges managing anxiety as three of the highest priorities.

Technology feels like a tantalising solution to address anxiety, with a range of options including apps and sensors. The idea of using sensors to collect data which might give us insights about an autistic person’s internal states is particularly exciting, but we do need to ask ourselves what the technology is telling us and whether the information is accurate.

Despite the hype, there isn’t much high-quality evidence to suggest that sensors can detect anxiety well. Funding issues and the challenge of carrying out research with people with high levels of need means there have been no studies large enough to produce good evidence. The US study only included 20 people and this new project will only involve seven.

Although we applaud Autism Together’s ambition and embrace of innovation, to push forward in this exciting area and generate the evidence to change things at scale. We need larger numbers and rigorously designed research to convince commissioners. That will be key to realising the future we all want to see, where all autistic people live long, healthy, happy lives.

Dr James Cusack, Director of Science, Autistica 

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