Label AFK autismfriendly research

 

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

A research project towards a children's version of the AFK-Checklist for autism-friendly research is currently being prepared and will be available on this website upon completion. 

If you intend to translate the checklist into another language than the ones available here, please send us an email

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

Download checklist here.