Autistic people and their families tell us they are more likely to take part in research if they feel their needs are met and their views are listened to. We are working with University College London (UCL) to create and test autistic Research Passports. These passports will be digital records that people can use to share their personal needs and experiences before taking part in research projects.
Explaining the need for this project
Autistic people have told us that not being able to explain their needs can put them off taking part in research. Parents and autistic people can also feel forced to drop out of trials if their needs are not met by researchers.
We need to find an easy way that people can share their needs and experiences. We want everyone to feel they can take part in research. We also need people to join and stay in trials until the end so that the research is a success. A research passport will help researchers, autistic people and families to communicate with each other better.
The aim of UCL’s proposed project is to develop and test a digital Research Passport.
The passport will provide the following information:
- Personal details (name, age, gender and identity)
- Emergency contact details
- Information about communication preferences such as how the individual wishes to be communicated with and how they’d communicate with others
- How autism affects them personally
- Other personal information (i.e. likes and dislikes, hobbies, etc)
The development and testing has three stages:
- Working with three focus groups (4-6 autistic adults, 4-6 parents of autistic children, and 4-6 researchers) to develop a prototype passport.
- Working alongside Autistica, autistic people and their families, to develop a sensory focused research session where the passport can be tested.
- Sending out a survey to autistic people, parents and researchers to gather their experiences of the research process.
How will this project make a difference?
These passports will help more people to take part research, and feel comfortable in the process. It will help to reduce any worries and anxieties that people may have about taking part in research. It will also help researchers to make changes to their processes and communication styles so that everyone can be heard and every trial can be a success.
If more people take part in research, we can carry out bigger, better studies, and start to make real progress towards our aim: a long, happy, healthy life for every autistic person.