Guidelines for Conducting Research Studies with the Autism Community

Abstract

There has been growing awareness of the concern expressed by autism communities that the majority of research conducted reflects neither the priorities of autistic people and their families or their needs. Further, many autistic people report that they feel unable to influence research and desire greater involvement in the research process. The aim of our current work is to provide practical guidelines for researchers to consider when conducting autism research in order to increase involvement, collaboration and trust between researchers and the autism community. These guidelines are based on the output of focus groups and interview discussions with 22 autistic adults and 8 parents of autistic children, conducted during a series of workshops carried out as collaboration between the research network, Autism@Manchester and Salfordautism, an autism support group led and run by autistic professionals. The guidelines are organised into four sections: (1) Pre-study considerations (2) Recruitment of Participants (3) Study visit Considerations (4) Post-study Considerations. These sections are structured to reflect the research pathway and allow researchers to understand more easily how to incorporate the recommendations into their research. The recommendations promote effective communication and equal partnerships between the autism and research communities so that the needs of participants pre-, during and post- research are taken into account and that they are supported to become involved in research at the level they choose. It is hoped that by implementing transparent and participatory approaches to their work, researchers might be able to reduce some of the dissatisfaction that the autistic community feel towards research and lead to higher standards in autism research.