First of its kind clinical study into digital self-management support for autistic adults reveals significant improvements in anxiety levels and quality of life.
Clinical Study: Digital Self-Management Positively Impacts Autistic Adults
A first of its kind prospective cohort study into the impact of digital self-management in helping to support autistic adults has revealed a significant reduction in anxiety, self-injurious behaviour, and memory and orientation problems.
The study was conducted by CIDER (Cornwall Intellectual Disability Equitable Research of Cornwall Partnership NHS Foundation Trust/University of Plymouth) in partnership with Brain in Hand, a UK-based digital healthcare company and an innovation leader in supported self-management.
The study demonstrated that providing digital support to autistic adults, or people on the waiting list for an autism assessment, can achieve positive psychological outcomes and help people maintain their wellbeing.
This is amid news that the waiting list for an autism assessment has increased by 35%, with many waiting several years.
Improvements to Anxiety & Quality of Life
Funded by the Small Business Research Initiative (SBRI Healthcare) programme, an Accelerated Access Collaborative initiative in partnership with the Academic Health Science Networks, the study included autistic adults or those waiting for an autism assessment in seven NHS sites across England and Wales. The sites were Cornwall, Wales, Coventry and Warwickshire, Haringey, Barnet and Enfield, Hertfordshire, Devon, and Cheshire.
Quantitative data was collected at two time points (baseline and follow up 12 weeks later), and used the Health of the Nation Outcome Scales for people with Learning Disabilities (HoNOS-LD) to measure the impact of Brain in Hand on quality of life, and the Hospital Anxiety and Depression Scale to assess for presence and change of anxiety and depression symptoms.
There were statistically significant improvements for anxiety and quality of life at the follow up stage. In particular, self-injurious behaviour reduced from 1.30 at baseline to 0.58 on follow up (HoNOS-LD). Memory and orientation problems reduced from 0.88 to 0.47, and communication problems in understanding reduced from 1.00 to 0.39. Problems with eating and drinking, and problems with relationships were also significantly reduced.
Qualitative data was also collected from a randomly selected sub-sample; the results found that Brain in Hand helped participants increase confidence and feel a greater sense of self-awareness, and that it was supportive during lockdown. All participants in the qualitative study would recommend Brain in Hand based on their own experience.
Empowering Autistic Adults to be More Independent
Brain in Hand is a digital self-management system with built-in human support that empowers a person to do more for themselves and build their independence. It combines practical solution-focused coaching, simple digital tools and 24/7 on-demand human support.
Professor Rohit Shankar MBE, FRCPsych, Consultant in Adult Developmental Neuropsychiatry (CFT), professor in neuropsychiatry, University of Plymouth, and director of CIDER, who led the study, said: “Autistic adults are a vulnerable population…yet adverse health outcomes for a proportion of autistic people could be avoided through appropriate levels of preventive health care and support. I think it is especially promising to see that Brain in Hand helped to significantly reduce anxiety and risk of self-injurious behaviour for those who completed the study.”
Connor Ward, autistic advocate and influencer, and independent advisor to Brain in Hand for the SBRI funding application, said: “The world can be difficult for autistic people to navigate – it’s not designed for us. Something like Brain in Hand, technology that can help us manage our own needs and avoid bigger problems, could be a massive benefit in offering autistic people greater independence.”
Dr Louise Morpeth, CEO of Brain in Hand, concluded: “Autistic people are poorly served by our society. Support is hard to access and research is woefully underfunded. The results of this study are an exciting new development and prove how human-backed technology can make a huge difference to autistic people.”
