Able Grounded Phenomenology (AGP) for non-autistic autism researchers to conduct ethical and humane autism research

AGP stands for Able Grounded Phenomenology. The AGP Model (Kupferstein, 2020) was a result of my dissertation research. It contains a checklist for non-autistic autism researchers to conduct ethical and humane autism research.

We know that under the medical model, the autistic, or medical autism, is a deficit-based approach. It classifies individuals based on how they are either maladaptive, or deficient in something that is a presumed norm. Essentially, autism generates a social construct where autistic people have something phenomenologically in common with social-cultural groups that we see in society today, and if you are going to include them in your research, you must make accessible your research with culture-fair testing.

The AGP Model contains a checklist, a practical application. You’re focusing on what is phenomenologically in common with your participants. When we did construct validity, I tested with a group of researchers to see if we could revise their survey questions. One of the survey questions was initially constructed to ask, “Would you define your location as rural or urban?” The concern with this question pertained to the lack of generalizability that a person would remain in the same location for their entire childhood.

The AGP Model’s teach-ask paradigm specifically supports that the participant should not find the task too difficult to complete, and then give up, because it demands a process of integrating multiple sensory systems for a single task. If you apply the AGP Model, you make accessible the federal requirements for communication differences, and open the world of possibility of firsthand inclusion of #actuallyautistic individuals in your research.