A two year collaborative project has shown that educating autism practitioners in vision awareness has increased access to eye care and improved day-to-day support services for people with autism and sight loss.
The Autism and Sight Loss project is a collaborative project between the RNIB (Royal National Institute of Blind People), Scottish Autism and Edinburgh Napier University, and is funded by the Scottish Government through the Scottish Strategy for Autism (2011). The aim of the project has been to evaluate a training model for better identifying and supporting people with autism and sight loss.
Research shows a high prevalence of vision issues in people with autism and with learning disabilities. Research has also shown that those with sight loss often present behaviour similar to those with autism, such as repetitive behaviours including eye flicking, rocking or gazing at light as well as linguistic features like echolalia. A person’s quality of life can be severely impaired by undiagnosed sight loss and if an eye condition is not detected a person may lose further sight.
The Autism and Sight Loss project focused on delivering an effective system of vision awareness training to Scottish Autism’s practitioners, along with the recruitment of ‘Vision Champions’, who undertook an advanced level of training. This has enabled the charity’s autism support practitioners to recognise the signs of sight loss in people with autism that they support. The training has helped practitioners become more confident about detecting sight loss and has led to reported increases in optometry referrals. Practitioners have also learned about simple changes that they can make to the support they offer an individual with autism, many of which have resulted in changes to practice and to service environments. The training also enabled practitioners to make comprehensive observations in order to make informed referrals to optometry.
The project partners are now looking to build on their initial findings by working with NHS Education Scotland (NES) to develop a comprehensive programme promoting autism awareness among optometrists.
The project report was launched at the Pathways to Eye Care workshop, on September 11 in Dunfermline, which saw researchers, policy makers, multidisciplinary professionals and optometrists, as well as individuals with autism and their families discuss the further development of sight loss awareness in autism services.
Joseph Long, Research Manager, Scottish Autism said: “The Autism and Sight Loss project has provided an important opportunity for knowledge exchange between practitioners from RNIB and Scottish Autism in order to improve the lives of people with autism and sight loss.”
“Promoting vision awareness, and training Vision Champions within Scottish Autism’s services has had demonstrable impacts on support practice, service environments and has increased optometry referrals. These changes will make a real difference to the wellbeing of people with autism and sight loss that we support.”
“The Pathways to Eye Care workshop will provide an opportunity to share the findings from the Autism and Sight Loss project and to begin a wider conversation about how we improve awareness, support, and access to optometry services for people on the autism spectrum’
Anne McMillan, Development Manager for RNIB Scotland, said: "This has been an exciting and innovative research collaboration which demonstrates the benefits of raising awareness of hidden sight loss amongst autism practitioners. The use of RNIB's Vision Champion Toolkit offers health and social care workers training and practical tools which support identification of sight loss and successful access to eye health care. This is an exciting project which will make a real difference for people with autism and sight loss."
Professor Michael Brown, Napier University said: “Edinburgh Napier University have been delighted to be a partner in this innovative collaborative project. The outcomes from the project demonstrate that education does make a real impact on enabling practitioners to make a difference to the lives of people with learning disabilities, autism and sight loss.”