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 Centre for Research in Autism and Education (CRAE) at University College London (UCL) to create and test Research Passports for autistic people. 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 said they feel happier aking part in research when they are able to explain their needs. 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 take part in research from start to finish 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 Research Passport is still being developed but will likely 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
- Information about sensory needs such as noise or light sensitivities
- How autism affects them personally
- Other personal information (i.e. likes and dislikes, hobbies, etc)
The project has three stages to develop, produce and evaluate the Research Passport:
- Working with focus groups of autistic adults, parents of autistic children, and researchers gather ideas about what the Research Passport should include.
- Working alongside Autistica, autistic people and their families, to develop a Research Passport prototype that will be trialled with ongoing research projects to assess how useful it is.
- Evaluating the Research Passport by sending out a survey to autistic people, parents and researchers to gather their experiences of the research process with and without a Research Passport.
How will this project make a difference?
A Research Passport will help more people feel more welcome and comfortable when taking part in research. It will help to reduce worries about researchers not knowing about their needs. A Research Passport will also allow researchers to make changes to their research processes and adjust communications styles so that everyone can be heard and the study 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.