Background

Autism Spectrum Disorder (hereafter referred to as autism) is thought to affect around 1 in 100 people. autism is typically diagnosed in childhood. In Lothian, Scotland, data suggest that around 800 children are assessed for ASD every year, and around 80% of those will receive a diagnosis of autism.

Diagnosis can be a lengthy process: the average diagnosis waiting time for children in Scotland in 2011 was 331 days – for some families this is quicker or longer. Research suggests that the length of the diagnostic process is, in part, due to clinicians not having all the relevant information about the child at each appointment. The process can be challenging for parents and carers, not least because they are navigating a complex system.

In addition, parents/carers often report being ‘left in limbo’ both before and after the initial assessment, with little information about what is happening or how to deal with the situation. Under the principles of ‘Getting It Right for Every Child’, support should be given to families as soon as it is needed, whether or not a child has a diagnosis.

Goals

This project plans to develop an interactive mobile phone app, co-designed by parents and carers of children with autism, to support them through the diagnostic process. The app will give information about the diagnostic process, including the people they will meet at each appointment and what their roles are, and signposting to other sources of support. Users will also be able to use the interactive elements of the app, which include the ability to record diary-like information (with text message reminders to input data), areas where clips of film can be uploaded to demonstrate behaviours to clinicians, and a prioritisation feature, for parents/carers to prepare what their priorities are. App users should be reassured that close attention will be paid to ethics and data privacy concerns, and that this will include input from the autistic community. It’s hoped that this will assist parents/carers in bringing together the information they require for appointments and allow them to get across their views and experiences more easily.

The project is led by a team of researchers at the SMC Research Centre for Learning Difficulties, based at the University of Edinburgh. The team, will work in collaboration with Intelligent Mobile, who will lead on app design, alongside The Salvesen Mindroom Centre, and an additional third sector partner, Colouring Outside the Lines, who will assist with recruiting parents to participate in co-designing the app.

Why Healthier Lives Data Fund?

Funding by the Healthier Lives Data Fund will bring together this diverse team, along with parents and carers of children with autism, to co-design the app. This exciting project combines the latest research and technology alongside lived experience, in order to produce a product which will be useful to parents/carers and clinicians alike.

By Dr Louise Marryat, Research Fellow