Leveling Up Regulatory Support Through Community Collaboration

Abstract

Purpose No group has more stake in the game than the community that researchers, educators, and practitioners aim to serve. In our field, we must recognize not only that autistic people are those most affected by decisions around programming and policies, but that they are key informants in decisions around the conceptualization, implementation, and evaluation of educational programming for autistic learners. Too often, they are left out of these discussions altogether. To illustrate the process of community collaboration, we discuss emotional and energy regulation (ER), a top priority among autistic people based upon their viewpoints. Method In this clinical focus article, we outline what emotional regulation is, why it is relevant and often challenging for the autistic population, the shortcomings of current practice, as well as practical strategies and ways of thinking about supporting ER for autistic learners. We provide theoretical insights as well as firsthand accounts from a diverse group of autistic people. Each autistic person contributing their perspective in this clinical focus article provided written consent for their participation, as well as direction as to how they wanted to be cited and acknowledged. Quotes were gathered from personal communications, social media posts, and online sources. The clinical viewpoint and materials and tools presented throughout the clinical focus article are the works of the authors that have been informed by the autistic community. Results Based upon the qualitative data presented in this clinical focus article, incorporating the autistic community voice when devising tools and strategies is validating of their experiences and generates useful supports. Conclusions Using a framework similar to the one presented here for engaging the autistic community will help to facilitate the conceptualization of more reliable, valid, and effective supports, goal-setting, and programming overall. Future directions related to the value of empirical study of the tools and strategies developed through such a process are offered.

Moulding environmental contexts to optimise neurodiverse executive function performance and development: A goodness‐of‐fit account

“…Neurodivergent children are likely to be over‐represented in the group of children whose preferred environment(s) does not regularly overlap with the environments to which they are exposed. Classroom environments and social norms in the Global North tend not to fit the attentional style and movement needs of children with ADHD (Russell et al, 2022), while sensory hyper‐sensitivity is common for autistic children, such that certain sounds, sights or smells, which may be common in the school environment, are painful or overwhelming (Ben‐Sasson et al, 2019; Laurent & Fede, 2021; Williams et al, 2019). The implication here is that the cumulative effects of poor environmental fit mean that neurodivergent children are more likely to be regularly performing at their lower‐limit EF ability, particularly while at school, thereby constraining further learning and development.…”

Autistic Adult Perspectives on Occupational Therapy for Autistic Children and Youth

“…To effectively collaborate with Autistic adults, occupational therapists should look toward groups that are consulting with Autistic adults for developing interventions for Autistic children (e.g., ASD Nest program (New York University, 2021) and that privilege Autistic voices throughout their programming (e.g., Autism Level Up (Laurent & Fede, 2021), and the Therapist Neurodiversity Collective (Therapist Neurodiversity Collective International, 2021). There is a large Autistic adult advocacy community that is trying to support the next generation of Autistic children.…”

“…Although research has begun to incorporate the values of Autistic adults (Fletcher-Watson et al, 2019; Laurent & Fede, 2021), to date no research has leveraged Autistic adult perspectives to understand the potential occupational therapy needs and values of Autistic children and youth. The purpose of this study is to understand Autistic adult perspectives on occupational therapy for Autistic children and youth.…”

“…Occupational therapy interventions and research for Autistic children and youth have predominantly focused on the needs of families from the perspectives of parents or other caregivers (Egilson et al, 2017; Wallisch et al, 2019). Parent perspectives provide invaluable understanding of their children’s daily lives; however, to develop authentic occupational therapy programming and support for Autistic children there is a growing acknowledgment of the need to include Autistic adult voices to provide insight into the lived experience of being Autistic (Laurent & Fede, 2021; Milton, 2014).…”

“…Autistic individuals are clear that they would like neurodiversity-positive approaches rather than behavioral interventions (Laurent & Fede, 2021), and there is a nascent shift toward strengths-based paradigms in supporting Autistic children (Koenig, 2020). However, there is insufficient understanding of what neurodiversity-positive approaches should look like in occupational therapy.…”