Enhancing Self-Advocacy in Students with Autism Spectrum Disorder

1. Student self-advocacy Action Research Project Caitlyne Brewer University of Ottawa Faculty of Education 7 February 2019

2. Overview / Summary Educators, students, and their ability to collaborate, play critical roles in the development of self-advocacy skills that foster student learning and well-being.

3. Rationale • Practicum placement in the Junior Autism Spectrum Disorder (ASD) Program at a local public school • Little first-hand experience in working with children on the autism spectrum • My research action topic arose from learning goalsI set for myself: • Learn how to help my students help themselves • Investigate current evidence-based best practices in teaching self-advocacy skills to students on the autism spectrum

4. Rationale • I posited that if my students were able to effectively self-advocate, it would increase: • Opportunities to learn about my students’ learning profiles • Opportunities to have their needs met • Learning for all • I also posited that what I learned about teaching self-advocacy skills to students on the autism spectrum would prove useful to any future student of mine, given the importance of Universal Design for Learning (UDL). • I hoped, too, to learn how to better advocate for myself; as a student, teacher, woman, and so on, given the interrelated nature of self-advocacy, assertiveness, and self-determination (Slater, 2012).

5. Self-advocacy • We are all self-advocates (Paradiz, 2012) • Refers to the learned ability to effectively communicate one’s needs and preferences (Paradiz, 2012; 2018; Shore, 2004; Slater, 2012) • For people on the autism spectrum, self-advocacy is particularly important in learning to advocate for social and sensory differences, needs and preferences (Paradiz, 2012; 2018; Shore, 2004) • Can be effective (i.e., mutual understanding) or ineffective (sometimes labelled behaviour) • Interrelation of self-advocacy and disclosure (Paradiz, 2012; 2018; Shore, 2004) • Disclosure can be full (e.g., report for IEP) or partial (e.g., informal request)

6. methods • How you set up your research • Spoke with my Associate Teacher (AT) about my topic of interest in November 2018 • Sought out evidence-based and peer-reviewed journal articles on the topic, as well as first-person accountsfrom individuals with lived experience on the autism spectrum • Iterative process:research (primary and secondary sources), reflection (research and experiences), and discussion, collaboration and experimentation with students and colleagues • How might “behaviours” occurring at school be examples of ineffective self-advocacy? • How can we capitalize on teachable moments to address these skills? • How you measured and tracked your observations and outcomes • Primarily through observation and informal discussions with colleagues and students • Embedded self-advocacy goals in existing curriculum planning

7. Results • By doing the following: • Modelling feeling-recognition and self-advocacy • Asking students what they need/want and helping them practice communicating it • Celebrating various effective forms of communication (words, gestures, visuals, technology, etc.) • Encouraging help-seeking behaviours (It’s okay to ask for help!) • Using Alternative and Augmentative Communication Prompting Hierarchy (see next slide)

8. AAC Prompting hierarchy Alternative and Augmentative Communication Prompting Hierarchy Goal: Prompts fade as mastery occurs over time.

9. Results • We observed: • Less prompting was required for students to employ self-advocacy skills • Students began to advocate for themselves and ask for help without prompting • Reduced frequency and intensity of outbursts/behaviours/ineffective self-advocacy, leading to a more conducive learning environment for all • Sense of increased trust and a stronger rapport amongst us all as teachers, learners, learners-becoming-teachers, and teachers-becoming-learners

10. Recommendations: Strategies • Remember self-advocacy is a learned skill • “If a child can’t learn the way we teach, maybe we should teach the way they learn.”  – Ignacio Estrada • Three steps in the self-advocacy process (Paradiz, 2012); 1. Self-awareness of needs and preferences, 2. The creation of an advocacy plan and disclosure (scripts are helpful), 3. Implementation and review • Celebrate difference and accept interconnectivity so that we can work together to negotiate and break down barriers (Slater, 2012) • The IEP is an excellent tool to accomplish this (Shore, 2004) • Help young people learn more about their bodies and strategies to communicate what they are experiencing (Paradiz, 2018) • Importance of sensory and social scans (examples to follow)

11. ISA (integrated self-advocacy) Sensory Scan Self-Advocacy Curricula developed by Dr. Valerie Paradiz (2009) Image source: http://pediatrics.aappublications.org/content/141/Supplement_4/S373

12. ISA Sensory Scan Self-Advocacy Curricula developed by Dr. Valerie Paradiz (2009) Image source: http://pediatrics.aappublications.org/content/141/Supplement_4/S373

13. Recommendations: future research • More studies needed regarding self-advocacy promotion amongst younger students on the autism spectrum (e.g., early childhood, middle childhood) • Majority of existing research focuses on students transitioning into high school or transitioning out of high school

14. references • Paradiz, V. [Autism Research Institute]. (2012, December 7). Self-Advocacy: Panel of Adults with ASD [Video file]. Retrieved from https://youtu.be/ZFh0a2v7BJM • Paradiz, V., Kelso, S., Nelson, A., & Earl, A. (2018). Essential Self-Advocacy and Transition. Pediatrics, 141 (Supplement 4), 373 – 377. 10.1542/peds.2016-4300P • Shore, S. (2004). Using the IEP to build skills in self-advocacy and disclosure. In S.M. Shore (Ed.), Ask and tell: Self-advocacy and disclosure for people on the autism spectrum (pp. 65-105). Shawnee Mission, KS: Autism Asperger Publishing. • Slater, J. (2012). Self-advocacy and socially just pedagogy. Disability Studies Quarterly, 32 (1). http://dx.doi.org/10.18061/dsq.v32i1.3033

15. Additional resources • https://www.autism.com/services_self-advocacy • http://www.autism-society.org/living-with-autism/autism-through-the-lifespan/self-advocacy/ • https://research.hollandbloorview.ca/Assets/Research/Documents/Research%20Centres%20and%20Labs/Autism%20Research%20Centre/AdvocacyToolKit-July24-LINKED-LOCKED.pdf • https://autisticadvocacy.org/resources/ • https://www.autism.net/training/available-courses/available-for-purchase/319-education/1472-teaching-self-advocacy-to-children-and-youth-with-asd.html