The ARC is committed to the principle of “nothing about us without us“.
Although we are team of scientists conducting research into autism, we respect the important principle that autistic people should be consulted closely on every new project we undertake.
Sometimes this consultation is called PPIE (Patient and Public Involvement and Engagement).
For different projects, the type of consultation varies. For example, if it is an applied research study with real world implications for autistic people and their families, such as the Vulnerability Study or the Health Study, we aim to have dialogue with autistic people and their families about all aspects of the study as these may be online surveys which are very accessible.
If it is a basic research study, such as genetics or stem cells, the dialogue is still important but the technical aspects may only be accessible to those with the relevant scientific expertise. Nevertheless, autistic people and their families have an important role in sharing their perspective on the relevance of the project, the volunteer experience, and how the value of the research can be maximised for their benefit.
We have advisory panels comprising of autistic individuals and/or parents of autistic individuals with experience in the relevant topic who help us to ensure we are asking clear and relevant questions in areas that are impacting peoples lives. Panel members are usually invited from our database of volunteers.