First of its kind study into digital self-management support for 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.
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.
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 with significantly higher rates of psychological distress, higher levels of self-harm, and increased premature mortality. Yet these 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. If we are to level the playing field for autistic people, we need to consider these types of innovative approaches that inform, enable, and empower people to manage for themselves.”
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. The challenges of living our day-to-day lives can cause real mental health problems and crises, but there are too many barriers for us to get the support we need. 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. We can’t forget that prevention is crucial for health systems, too, as they try to beat the backlog and recover from the long-lasting impact of the pandemic. Brain in Hand is going a long way in helping to provide support for individuals who need it, all the while easing the strain on costs and resources for healthcare providers too.”
Although funded by Brain in Hand’s SBRI award, the study was conducted by an independent research team.