Our goal is to communicate findings from current autism research and discuss how they are relevant for the everyday lives of autistic people and their families.
Autistic people and their families should have the opportunity to play a more active role in designing autism research. Also professionals who work with autism (psychologists, physicians, educators) should be involved. Using surveys and focused discussions we aim to develop research questions that are of theoretical significance and of practical value for life with autism.
We also want to do actual research. Autistic people and their families will be able to participate in regular surveys via a secure member area. They will receive immediate feedback on their individualized survey results. For one, feedback will involve comparisons to other people’s answers (e.g. “How does my sensory sensitivity compare to other autistic people?”). They will also have a chance to track their individual development over a longer time frame (e.g. “How is my life satisfaction today compared to two years ago?” “What has changed during this time?”). The more people take part, the more reliably we can form conclusions about general relationships – e.g. how life satisfaction relates to particular changes in the living situation.
One main role model for our research is a project from the Netherlands that has been running for several years. Together with the biggest national autism association, researchers from Vrije Universiteit Amsterdam founded the Nederlands Autisme Register (NAR). The NAR is an online platform that currently hosts around 2000 autistic children, adolescents and adults. Members are registered in a secure manner that protects their privacy and is in line with state-of-the art data protection regulations. By taking part in regular surveys, autistic members have contributed to a unique longitudinal data set that is continuously growing. Thanks to these contributions, the NAR is able to describe the situation of autistic individuals of different age groups throughout the whole country in many important areas of life. The survey contents are developed in collaboration with autistic people.
Last modified: 21/11/2018