Developpement de l'Echelle visuelle multidimensionnelle evaluant l'affect, l'anxiete, la fierte et l'energie par le biais d'un partenariat de recherche avec des chercheurs autistes

Titre original en anglais : Developing the Multidimensional Visual Scale Assessing Affect, Anxiety, Pride, and Energy Through a Research Partnership with Autistic Scholars

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Riccio, A., Santos, J. D., Kapp, S. K., Jordan, A., DeNigris, D., & Gillespie-Lynch, K. (2020). Developing the Multidimensional Visual Scale Assessing Affect, Anxiety, Pride, and Energy Through a Research Partnership with Autistic Scholars. Autism in Adulthood, 2(1), 87-100. https://doi.org/10.1089/aut.2019.0067

Date de publication: 28/02/2020 Ajout dans AutiHub: 06/07/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
6
Auteur·ices de la publication identifié·es comme autistes
1 / 6 (16,7 %)
  1. Ariana Riccio
  2. Jin Delos Santos
  3. Steven K. Kapp *
  1. Allison Jordan
  2. Danielle DeNigris
  3. Kristen Gillespie-Lynch

Résumé

Les etudes de recherche sur l'autisme n'ont traditionnellement pas reussi a representer toute la diversite du spectre de l'autisme en raison du manque de mesures disponibles pour une utilisation avec des participants qui preferent s'exprimer visuellement. Une mesure multidimensionnelle des emotions, qui peut inclure a la fois des invites basees sur des images et sur du texte, peut ameliorer l'accessibilite des mesures d'evaluation des emotions et elargir la participation aux evaluations de recherche et d'education afin d'inclure les personnes qui communiquent de manieres diverses. Les mesures basees sur des images concues pour evaluer les emotions des participants peuvent etre utiles pour la recherche concernant l'identite autiste et l'evaluation des services, deux domaines dans lesquels la representation de perspectives diverses est necessaire. Notre groupe participatif de chercheurs autistes et non autistes a developpe une Echelle visuelle multidimensionnelle evaluant l'affect, l'anxiete, la fierte et l'energie (AAPE) en adaptant et en elargissant une echelle existante d'evaluation des emotions. Lors des tests de l'AAPE avec des etudiants autistes a l'universite (n = 72), leurs reponses ouvertes ont indique que les dimensions de l'AAPE relatives a l'affect (97,2 % correct), a l'anxiete (79,2 % correct) et a l'energie (84,7 % correct) etaient bien comprises sans etiquettes basees sur du texte, avec un potentiel d'amelioration de la maniere dont la fierte (52,8 % correct) etait representee. Lorsqu'on leur fournissait les etiquettes que chaque dimension etait censee representer, les participants convenaient generalement que chaque dimension emotionnelle etait bien representee. Lors des tests dans un camp d'ete educatif informel avec des enfants et des adolescents autistes (n = 50), l'AAPE a ete bien recue et a revele des informations sur les reponses emotionnelles des eleves a differentes strategies d'enseignement pouvant orienter des ameliorations des programmes. L'AAPE est utile comme outil pour aider diverses personnes autistes a defendre leurs propres interets et a ameliorer la recherche et les services. Resume grand public Pourquoi cette etude a-t-elle ete menee ? Il existe tres peu d'outils que les personnes autistes peuvent utiliser pour partager ce qu'elles ressentent. Nous voulions developper un outil pour aider les personnes autistes a exprimer leurs emotions a l'aide d'images. Les images peuvent aider les personnes autistes a partager ce qu'elles ressentent. Quel etait l'objectif de cette etude ? Nous voulions creer un outil facile a comprendre que les personnes autistes peuvent utiliser pour partager ce qu'elles ressentent. Qu'ont fait les chercheurs ? Notre groupe de recherche est participatif, ce qui signifie que des chercheurs autistes et non autistes ont travaille ensemble pour creer notre outil. Un artiste autiste a dessine l'outil. Nous l'avons appele l'AAPE, qui correspond aux emotions qu'il evalue : Affect, Anxiety, Pride, and Energy. Nous avons travaille ensemble pour voir dans quelle mesure l'AAPE fonctionnait. Nous avons utilise une enquete pour voir si des lyceens et des etudiants autistes a l'universite comprenaient notre premier essai de l'AAPE, et nous avons appris de ces etudiants comment ameliorer l'AAPE. Nous avons travaille ensemble pour ameliorer l'AAPE. Ensuite, nous avons realise une autre enquete avec des etudiants autistes a l'universite pour voir si notre deuxieme essai de l'AAPE fonctionnait mieux. Puis, nous avons demande a des enfants et adolescents autistes d'utiliser l'AAPE pour partager ce qu'ils ressentaient face a differentes methodes d'enseignement. Quels ont ete les resultats de l'etude ? Lors de notre test final, nous avons demande a 72 etudiants autistes a l'universite de nous dire quelles emotions ils pensaient que l'AAPE montrait. Les etudiants a l'universite ont pense que l'affect (97,2 %), l'anxiete (79,2 %) et l'energie (84,7 %) montraient les emotions que nous visions a montrer, avec une marge d'amelioration dans la maniere dont la fierte (52,8 %) etait montree. Apres avoir indique aux participants quelle emotion chaque echelle montrait, ils ont convenu que l'affect (score moyen de 4,28 sur 5) et l'anxiete (4,29 sur 5) montraient le mieux les emotions, suivis de l'energie (4,08 sur 5) et de la fierte (3,5 sur 5), sur une echelle de 1 a 5 (tout a fait d'accord). Les etudiants preferaient utiliser l'AAPE par rapport aux enquetes basees sur du texte que nous avions utilisees dans le passe. Les resultats ont montre que l'AAPE fait un bon travail pour mesurer les emotions. Des modifications peuvent encore etre necessaires pour mieux montrer la « fierte ». Un travail avec des personnes non orales est necessaire pour s'assurer que notre mesure fonctionne bien pour les personnes qui communiquent de differentes manieres. Quelles sont les faiblesses potentielles de l'etude ? Les adolescents et adultes autistes avec lesquels nous avons teste l'AAPE jusqu'a present n'ont pas ete tres diversifies. Nous n'avons pas inclus de participants qui communiquent sans parler dans ces premiers tests de l'AAPE. Nous prevoyons d'utiliser l'AAPE avec des groupes plus diversifies dans de futures etudes. Comment ces resultats aideront-ils les adultes autistes maintenant ou a l'avenir ? Dans une future etude, nous utiliserons l'AAPE pour evaluer des images montrant des experiences liees au fait d'etre autiste, telles que se sentir exclu d'un groupe social, avoir des difficultes sensorielles et creer des motifs. Nous aimerions le faire parce que certaines etudes parlent d'experiences negatives de l'autisme, telles que ressentir le besoin de cacher des traits autistes, mais d'autres etudes decrivent des forces de l'autisme, telles que des memoires fortes et des connaissances avancees dans certains sujets. Cependant, ces etudes ne parlent pas des emotions qui accompagnent ces experiences ni de la question de savoir si ces experiences sont partagees avec des personnes autistes qui n'utilisent pas la parole pour communiquer. L'AAPE est un outil qui pourrait nous aider a comprendre ce que diverses personnes autistes ressentent a propos de l'autisme.

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.

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Ces indicateurs décrivent la bibliographie citée importée pour cette publication. Les métriques de références citées utilisent le total des références citées comme dénominateur. Les métriques d’auteurices cité·es indiquent si elles utilisent toutes les occurrences d’auteurices cité·es ou seulement les occurrences rattachées à des auteurices déjà intégré·es à la base de données AutiHub. Ils utilisent les rattachements mis en cache entre les auteurices cité·es et les auteurices intégré·es à la base de données AutiHub. Dernier calcul : 16/08/2026 11:30.

Références citées
53
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
7 / 53 (13,2 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
17 / 207 (8,2 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 17 / 100 (17,0 %). Auteurices cité·es distinct·es identifié·es comme autistes : 12 / 183 (6,6 %).
Occurrences citées rattachées à la base AutiHub
100 / 207 (48,3 %)
Auteurices cité·es distinct·es rattaché·es : 78 / 183 (42,6 %)
Occurrences rattachées, non identifiées comme autistes
83 / 100 (83,0 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 83 / 207 (40,1 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 66 / 78 (84,6 %).
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