A two-year research project has found that early detection of sight loss amongst people with autism and with learning disabilities can significantly enhance their quality of life.
The Autism and Sight Loss project is a collaborative project between RNIB, Scottish Autism and Edinburgh Napier University, and is funded by the Scottish Government through the Scottish Strategy for Autism. 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 rate 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 diagnosed 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 led to improved detection rates for sight loss, with practitioners also learning about simple changes that they can make to the support they offer an individual with autism, and to their environment. The training also enabled practitioners to make comprehensive observations in order make informed referrals to optometry.
The project partners are now looking to build on their initial findings by working with NHS Education Scotland to develop a comprehensive programme promoting autism awareness among optometrists. The project report will be launched at the Pathways to Eye Care workshop, on September 11 in Dunfermline, which brings together researchers, policy makers, multidisciplinary professionals and optometrists, as well as individuals with autism and their families to discuss the further development of sight loss awareness in autism services.
Joseph Long, research manager, Scottish Autism said: “This project has provided an excellent opportunity for Scottish Autism’s practitioners to tap into the expertise of RNIB Scotland to increase their ability to recognise the signs of sight loss amongst the individuals we support.
“Promoting vision awareness and training our own Vision Champions within Scottish Autism has helped us enhance the support practices we deliver, improve the environments where we operate and has increased optometry referrals. This exchange of knowledge has made an immeasurable difference in improving the lives of people with autism who experience sight loss.
“The upcoming Pathways to Eye Care workshop will provide an opportunity to further 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 across the community for people who live on the autism spectrum.”
Anne McMillan, UK practice and development manager for RNIB, 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."