Development of a Visual Autistic Identity and Emotions Scale

Background: Non-speaking individuals and those historically labeled as “low-functioning” have rarely been included in research on perceptions of autism (Jones et al., 2013; Sequenzia, 2017). The prevailing use of “high/low-functioning” to qualify autism, groupings rejected by self-advocates as inaccurate and offensive, reduces the complexities and abilities of autistic people (Endow, 2015; Kenny et al., 2016). Due to marginalization of these groups, the ways non-speaking people experience autistic identity is not represented in the current literature. Measures using alternate modes of communication are needed to reach more autistic individuals so they may share their experiences. In the current study, we adapted a visual measure widely-used to assess emotions, the Self-Assessment Manikin (SAM; Bradley & Lang, 1994), composed of scales representing valence, arousal and control, to develop a visual autism identity scale.

Objectives: To create and evaluate a novel visual measure of autistic identity comprised of picture-based representations of core aspects of the lived experience of autism, identified by autistic members of our research team, and associated emotion rating scales.

Methods: A participatory team of 5 autistic and 4 non-autistic researchers iteratively developed an adapted version of the SAM (Figure 1), drawn by an autistic co-author, and a list of core aspects of the lived experience of autism (Table 1). Adaptation of the SAM was guided by an evaluation of the original SAM wherein autistic teenagers (n=15) and autistic (n=16) and non-autistic (n=148) college students were asked “What do you think these pictures are measuring?” Responses were qualitatively coded after researchers obtained reliability. We are currently evaluating the psychometric properties of the full scale by having autistic adolescents and college students rate each aspect of the lived experience of autism and relating responses to the RAADS-14 (Eriksson et al., 2013).

Results: Autistic and non-autistic participants exhibited pronounced difficulties interpreting the widely used SAM emotion scales. The scale for valence was most often understood, with 81% of autistic/93% of non-autistic participants correctly interpreting the scale. In contrast, only 19% of autistic/28% of non-autistic participants correctly identified the arousal scale. Many participants instead described hunger or physical pain (52% autistic, 39% non-autistic). Similarly, only 6% of autistic/16% of non-autistic participants correctly identified the control scale. Most interpreted the scale as body size or height (84% autistic, 65% non-autistic). By attending to the types of errors participants made with the original SAM, the participatory group developed 4 emotion rating scales (Figure 1): valence (sad to happy), anxiety (calm to anxious), pride (shameful to prideful), and energy level (depleted to energetic), as well as a visual measure of centrality to self.

Conclusions: Findings highlight that an emotion rating scale that is very widely used (5644 citations) is confusing for autistic and non-autistic youth. Measures of emotion that are developed in a participatory manner, with many opportunities for people to provide open-ended interpretations and careful validation, are clearly needed. After validating our autistic identity scale, we will use it with autistic people across the spectrum to gain a fuller understanding of autistic experience and identity.