Developing the Multidimensional Visual Scale Assessing Affect, Anxiety, Pride, and Energy Through a Research Partnership with Autistic Scholars.

ABSTRACT

Autism research studies have traditionally failed to represent the full diversity of the autism spectrum due to the lack of measures available for use with participants who prefer to express themselves visually. A multidimensional measure of emotions, which can include both picture- and text-based prompts, may improve accessibility of emotion rating measures and broaden participation in research and educational evaluations to include those who communicate in diverse ways. Picture-based measures designed to assess participants' emotions may be useful for research concerning autistic identity and service evaluation, two areas where representation of diverse perspectives is needed. Our participatory group of autistic and nonautistic researchers developed a Multidimensional Visual Scale Assessing Affect, Anxiety, Pride, and Energy (AAPE) by adapting and expanding upon an existing emotion rating scale. When testing the AAPE with autistic college students (n = 72), their open-ended responses indicated that the AAPE's dimensions of affect (97.2% correct), anxiety (79.2% correct), and energy (84.7% correct) were well comprehended without text-based labels with potential for improvement in how pride (52.8% correct) was represented. When provided with the labels that each dimension was intended to represent, participants generally agreed that each emotional dimension was well represented. When tested in an informal educational summer camp with autistic children and adolescents (n = 50), the AAPE was well received and revealed insights about the students' emotional responses to different instructional strategies that can guide curricular improvements. The AAPE has utility as a tool to help diverse autistic individuals self-advocate and improve research and services. Lay summary: Why was this study done? There are very few tools that autistic people can use to share how they feel. We wanted to develop a tool to help autistic people express their emotions using pictures. Pictures can help autistic people share how they feel.What was the purpose of this study? We wanted to make an easy-to-understand tool that autistic people can use to share how they feel.What did the researchers do? Our research group is participatory, meaning that autistic and nonautistic researchers worked together to make our tool. An autistic artist drew the tool. We called it the AAPE, which stands for the emotions it assesses Affect, Anxiety, Pride, and Energy. We worked together to see how well the AAPE worked. We used a survey to see if autistic high school and college students understood our first try at the AAPE and we learned how to make the AAPE better from these students. We worked together to make the AAPE better. Then, we did another survey with autistic college students to see if our second try at the AAPE worked better. Then, we asked autistic kids and teenagers to use the AAPE to share how they felt about different ways of teaching.What were the results of the study? In our final test, we asked 72 autistic college students to tell us what emotions they thought the AAPE was showing. College students thought that affect (97.2%), anxiety (79.2%), and energy (84.7%) showed the emotions we aimed to show with room for improvement in how pride (52.8%) was shown. After we told participants which emotion each scale was showing, they agreed that affect (average score 4.28 of 5) and anxiety (4.29 of 5) showed the emotions best, followed by energy (4.08 of 5) and pride (3.5 of 5) on a scale from 1 to 5 (strongly agree).Students preferred using the AAPE compared with text-based surveys we used in the past. Results showed that the AAPE does a good job at measuring emotions. Edits may still be needed to better show "pride." Work is needed with nonspeaking people to make sure our measure works well for people who communicate in different ways.What are potential weaknesses in the study? The autistic adolescents and adults we have tested the AAPE with so far have not been very diverse. We did not include participants who communicate without speaking in these first tests of the AAPE. We plan to use the AAPE with more diverse groups in future studies.How will these findings help autistic adults now or in the future? In a future study, we will use the AAPE to rate pictures that show experiences of being autistic, like feeling outside a social group, having sensory difficulties, and making patterns. We would like to do this because some studies talk about negative experiences of autism, like feeling the need to hide autistic traits, but other studies describe strengths of autism, like strong memories and advanced knowledge in particular subjects. However, these studies do not talk about the emotions that come with these experiences and if these experiences are shared with autistic people who do not use speech to communicate. The AAPE is a tool that might help us understand how diverse autistic people feel about autism.