PCORI CARE Conference Speakers
The Comparative Autism Research Effectiveness (CARE)‘s goal is to flip the autism narrative from dehumanizing and curative (Sauer et al., 2021) to one that recognizes autism as a valuable form of neurodiversity, where research centers on improving autistic health, empowerment, and self-determined quality of life outcomes.
This project is funded by the Patient Centered Outcomes Research Institute (PCORI) and aims to connect autistics, parents, and caregivers with researchers and clinicians. We will do this by creating modules that help everyone understand neurodiversity, research, and health topics. Then, we will bring everyone together in a virtual two-day conference (October 20th and 21st, 2023) to begin collaboration and further capacity building.
Our team:
Project Lead: Alejandro Brice, Ph.D., CCC-SLP (an acquired neurodivergent from a subarachnoid hemorrhage)
Co-Project Lead: D’Jaris Coles-White, Ph.D., CCC-SLP (a parent of two autistic sons)
Co-Project Lead: Julie Roberts, M.S., CCC-SLP (a formally late-diagnosed autistic woman)
CARE Conference Speakers - October 20 - 21, 2023
Dr. Monique Botha (University of Stirling)
Rigorous research and practice: Autistic involvement is the future, exclusion is the past.
Research and practice are embedded in social and historical contexts which shape how we are willing to conceptualize and discuss phenomena. For autistic people, research and practice has involved our dehumanization and objectification, which is often defended in the name of an imagined idea of “science”. In this talk, I show how this ableist and stigmatizing approach to autism has resulted in a flawed science, and poor practice. Working in participatory ways with autistic people to create research can challenge this dehumanization and objectification providing avenues towards impactful and rigorous research and inform a rights-based approach to practice.
Dr. Noah Sasson (University of Texas, Dallas)
Empirical Foundations for the Double Empathy Problem
In contrast to a medical model that conceptualizes autistic sociability as inherently disordered, the Double Empathy Problem (DEP; Milton, 2012) proposes that miscommunication and breakdowns in social understanding between autistic and non-autistic people are mutually determined. In this talk, I will review empirical evidence generated by my lab and others supporting the DEP and discuss how broadening our conceptualization of social disability in autism beyond the medical model can help to build inclusivity and improve outcomes.
Ari Ne’eman (Harvard)
Abstract: Autism intervention research frequently assumes that the goal of autism intervention should be to make an autistic appear as non-autistic as possible. The neurodiversity movement has critiqued this idea, but has often struggled to translate this critique into measurable change in research practice. This presentation focuses on outcome measurement as a concrete arena through which the ideas of the neurodiversity movement can be operationalized in autism research, highlighting the need for revisions to several commonly used outcome measures in autism research and clinical practice.
Bio: Ari Ne’eman is a Ph.D. Candidate in Health Policy at Harvard University. He previously served as executive director of the Autistic Self Advocacy Network from 2006 to 2016 and as one of President Obama’s appointees to the National Council on Disability from 2010 to 2015.
Dr. Laura DeThorne (Western Michigan University)
I spent the first decade of my career focused on the genetic and environmental influences on child language impairment, which was heavily steeped in the medical model of disability and traditional experimental research methodologies. During that same decade I gave birth to two sons whose language trajectories were remarkably different, one of whom now identifies as autistic. I will highlight how this parental journey has shifted my own perspective on communication, autism, and the scientific approach in ways that I hope will shape our work toward more collaborative and just supports for the autistic community.
Amanda Barbeau (PCORI)
Research Done Differently: PCORI’s Commitment to Funding Research in IDD
PCORI’s research differs from traditional research because it has a unique mandate. We are charged with ensuring that patients, caregivers, and other relevant stakeholders have the information they need to make real-world decisions about their care. The research PCORI funds aims to be relevant and useful to those engaging with the US Healthcare System and the way we accomplish this is by engaging patients, caregivers, clinicians, policy makers, and stakeholders from across the healthcare spectrum to participate at every stage of the research process—from design to dissemination. In 2019, Congress passed legislation that reauthorized funding for PCORI and amended our original authorizing statute to include a focus on funding research in Intellectual and Developmental Disabilities. This talk will focus on providing an overview of PCORI, how we aim to fund research guided by and for patients, and what we have currently funded in Intellectual and Developmental Disabilities with a specific focus on studies including Autistic people.