Checklist for Autism-friendly Research with Adults

This document was submitted by Silke Lipinski and Isabel Dziobek

At Autism Research Cooperation Berlin

If you have any questions about this document, please get in touch with the authors.

You are welcome to use or adapt this document, provided due acknowledgement to the source is given:

Silke Lipinski, Elisabeth S. Blanke, Ulrike Sünkel, Isabel Dziobek et. al. (2019). Forschende brauchen Daten – aber was brauchen die Proband_innen? Die Präferenzen erwachsener Autisten bei Teilnahme an wissenschaftlichen Studien. Society for Research in Autism Spectrum Conditions (WGAS); p.115. 12. Scientific Meeting for Autism Spectrum Conditions (WTAS); FEB 21-22, 2019; Augsburg, GERMANY. (ISBN: 978-3-9814817-7-8 )

Lipinski, S., & Dziobek, I. “Checklist for Autism-friendly Research with Adults”. Autism Research Cooperation Berlin.

AFK-Checklist for autism-friendly research with adults

Research with participants on the autism spectrum should pay particular attention to the implementation of the ethical aspects associated with the Declaration of Helsinki (above all an appropriate benefit-risk ratio, informed consent, data protection). In addition, autistic participants have special needs compared to neurotypical subjects, which should be considered towards autism- safe- and friendly research. This may facilitate participation in the study and recruitment. This list is the result of an AFK (Autism-Research-Cooperation) participatory research group study in Germany with over 170 adult participants with autism and 140 adult controls without autism. The list focuses on the differences between the preferences of autistic adults and controls.

General issues □ Few, non-changing interaction partners □ Clear communication, no jokes and irony □ Keep small talk at a minimum □ Best possible consideration of sensory needs

Before the study □ Possibility of getting to know places/lab in advance (through e.g. visit, photos, description) □ Possibility to bring along individual/special objects (e.g. for calming down) □ Possibility to communicate individual needs and anticipated difficulties in advance and on site

During the study

□ Prompt communication of changes in the procedure in comparison to what has been communicated before □ Visualization / verbalization of the experiment’s time course □ Possibility to follow important individual routines □ Soft lighting conditions in the examination rooms □ No backlight conditions □ No flickering screens □ Consideration of individual limits with regard to e.g. sensory stress or exertion □ Only one request / task at a time □ Provision of a room to retreat (e.g. for longer breaks or in case of over-stimulation) □ Allowing of special interests in experiment

After the study □ Possibility to pose questions and comments on the experiment after participation □ Sufficient time to prepare for the next task of the day (e.g. journey home) □ Information about the results of the study □ Sharing of publications on the study

If the checklist is considered in a study, researchers can download the checklist label and place it on their study information.

Find the checklist, the label and more about our work under: http://autismus-forschungs-kooperation.de/index.php/en/checklist-for- autismfriendly-research

This AFK-Checklist for autism-friendly research was translated into English with permission of the AFK.