care.therapistndc.orgComparative Autism Research Effectiveness (CARE) - CARE

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Behavior: Self Harm or Aggression Acquired Neurological Conditions Events Neurodiversity Training On-Demand Courses Live Courses Become a Member Directory Connect with Julie Blog Menu Therapy Augmentative and Alternative Communication (AAC) Non-ABA Evidence Based Practice Feeding Therapy Non-ableist Pragmatic Language Therapy Social Skills Training Advocacy Restraint and Seclusion Disability Rights are Civil Rights Therapist Neurodiversity Collective’s Ethics & Values Education Flipping the Autism Narrative: An Introductory Video Guide Applied Behavior Analysis (ABA) Why not(PBS, PBIS, or Positive Reinforcement? Behavior: Self Harm or Aggression Acquired Neurological Conditions Events Neurodiversity Training On-Demand Courses Live Courses Become a Member Directory Connect with Julie Blog Comparative Autism Research Effectiveness (CARE) CARE Home Conference Speakers CARE Educational Webinars CARE Home Conference Speakers CARE Educational Webinars C A R E Conference Downloads CARE Conference Agenda – This download has the short version of the conference schedule, a detailed version of the conference schedule, and the 7 questions participants will discuss. Zoom Best Practices for Conference The C A R E ( Comparative Autism Research Effectiveness ) Online Conference October 20 – 21, 2023 C A R E Conference Agenda IMPORTANT: All times listed are GMT/UTC (New York) time zone. You may find this website helpful in changing times to your time zone. C A R E Conference – Day One: Friday, October 20, 2023 11:00-11:10am Welcome from the CARE Team Dr. Alejandro Brice; Dr. D’Jaris Coles-White; Julie Roberts, MS, CCC-SLP 11:10-12:10pm Amanda Barbeau from PCORI (Q&A moderated by Dr. Brice) 12:10-12:20pm SHORT BREAK 12:20-12:35pm Setting the Stage: 7 Research Questions 12:20-12:25pm SHORT BREAK 12:25-1:25pm Ari Ne’eman – Autistic Social Justice, Accessibility and Inclusion (Q&A moderated by Dr. Brice) 1:25-1:55pm LUNCH BREAK 1:55-5:00pm Team Breakouts & Report Outs – Key Research Questions 1, 2, 3 4:55-5:00pm Review Day 2 agenda, Visual Illustration & wrap-up C A R E Conference – Day Two: Saturday, October 21, 2023 11:00-11:10am Welcome /Recap Day 1 /Setting the Stage for Day 2 11:10-12:10pm Dr. Monique Botha – Language of Violence (Q&A moderated by Julie Roberts) 12:10-12:20pm SHORT BREAK 12:20-1:20pm Dr. Noah Sasson – Empirical Foundations for the Double Empathy Problem (Q&A moderated by Julie Roberts) 1:20-1:50pm LUNCH BREAK 1:50-3:00pm Team Breakouts & Report Outs – Key Research Questions 4, 5 3:00-4:00pm Dr. Laura DeThorne – The Influence of the Neurodiversity Paradigm on my Parental and Professional Journey (Q&A moderated by Dr. Coles-White) 4:00-4:55pm Team Breakouts & Report Outs – Key Research Questions 6, 7 4:45-5:00pm Question 6 & 7 Report outs, Wrap-up, Link to Post-conference survey. The C A R E project’s goal is to radically flip the autism research narrative… from a dehumanizing one where autistic people are defined as a group of neurodevelopmental diseases” (Sauer et al., 2021) and where the autism research focuses on curative measures and eugenics (Spectrum 10k) to one that recognizes autism as a valuable form of neurodiversity, where the research centers on improving autistic mental health and self-determined quality of life outcomes, and significantly reducing victimization. Our team: Project Lead: Dr. Alejandro Brice (an acquired neurodivergent from a subarachnoid hemorrhage); Co-Project Lead: Dr. D’Jaris Coles-White (a parent of two autistic sons); and Co-Project Lead: Julie Roberts, M.S., CCC-SLP (a formally late-diagnosed autistic woman). We are all speech-language pathology researchers and clinicians. C A R E will connect consumers (autistic people, parents, and caregivers) with researchers and clinicians to evaluate the current focus of autism research and determine areas for improvement. Our project team will create modules that help consumers increase their understanding of autism research and inform autism researchers and clinicians about neurodiversity-related topics. Teams of researchers, consumers, and clinicians will come together in a virtual two-day conference to begin their collaboration and capacity building. Our goal is to have autistic people lead all PCORI grant and conference activities. C A R E Project Summary A team at the University of South Florida , Western Michigan University , and Therapist Neurodiversity Collective (TNDC) has been approved for a $210,204 funding award through the Eugene Washington PCORI Engagement Awards (Engagement Awards) program, an initiative of the Patient-Centered Outcomes Research Institute (PCORI). The funds will support autistics, family, caregivers, researchers, and clinicians to prepare for neurodiversity topics. Background: Autistics, as consumers, must be able to provide their perspectives in the research process. When researchers and consumers work together, research becomes more appropriate for the autistic’s needs. Sometimes it is difficult for consumers and researchers to work together because of different backgrounds and experiences. It is especially important for autistics to have a voice in research through patient-centered outcomes research/comparative clinical effectiveness research (PCOR/CER) evidence-based practices and for researchers and clinicians to celebrate and not subjugate neurodiversity and neurodivergence. Proposed Solution to the Problem: The purpose of the Comparative Autism Research Effectiveness ( C A R E ) project is to connect consumers, i.e., autistics and caregivers, with researchers and clinicians to plan and evaluate effective research interventions. The project team will create modules that help consumers understand research and also prepare researchers and clinicians for neurodiversity topics. Then, the researchers will bring teams together in a virtual conference to begin their collaboration and further their capacity building. Objectives: The primary objectives of the project are to create 10 C A R E teams consisting of autistics, caregivers, researchers, and clinicians, to support the teams’ professional development around PCOR/CER and neurodiversity principles and to build relationships across these stakeholder groups for future collaboration related to autism PCOR/CER. Activities: The C A R E teams will complete three training modules on PCOR/CER, neurodiversity, and autism. The teams will then participate in a two-day virtual conference to continue their capacity building and to codesign action plans to improve autism research neurodiverse collaboration. After the conference, teams will create research questions guided by the neurodiversity model of disability. Project Outcomes and Outputs Short-term outcomes during the project period include: Project C A R E will create researcher-person-partners teams with action plans for taking the steps they need to collaborate effectively in evidence-based CER. Project C A R E will create a collaborative environment through an online conference that will be accessible to autistics, family/caregivers of autistics, autism researchers, and autism clinicians. Project C A R E will create three check-ups/follow-up points after the conference to further support the integration of actions as one of the products of this project. Outcomes will include reports and publications that will help disseminate the results of the project and also through...