What is PAARCC?
PAARCC is a group of 8 adults, including autistic adults parents of autistic children, and community allies, that meet monthly with University of Pittsburgh Autism Researchers. PAARCC works together to make sure that science is meaningful to the autistic community. We work on generating research ideas, provide oversight and accountability to researchers, and share valuable lived experience with autism researchers.
History of the Group:
PAARCC was founded by Dr. Kelly Beck of the University of Pittsburgh in December of 2021. PAARCC is co-led by Dr. Kelly Beck and Jamie Upshaw, MS, MEd. Jamie Upshaw is the Executive Director of Autism Urban Connections, Inc., a 501(c)(3) dedicated to supporting autistic people and families, with a particular emphasis on supporting families identifying with African American, Black, and other minoritized groups. PAARCC held its first monthly meeting in January 2022 and has met monthly since. PAARCC was integral to the Autism Center of Excellence grant proposal and serves as the central community based participatory research hub for the center. Since its inception, PAARCC has been involved in the initial planning stages and submission of 4 grant proposals.
Past & Current Projects:
PAARCC is central to the Pittsburgh Autism Center of Excellence project. PAARCC has worked on research protocols for the ACE to make sure that the research is inclusive and accessible to the community. PAARCC works on advertising and other materials to share with the autistic community.
PAARCC members identified improving public school environments as a top priority for autism research. Drs. Kelly Beck and Carla Mazefsky responded by developing the SUN Collaborative Project to support public school efforts to create an inclusive school environment for neurodivergent children.
PAARCC members named the Relationships Employment Autonomy and Life Satisfaction (REALS) scale. They also provided input to the investigators on the usefulness of the REALS and made suggestions on how to best disseminate REALS into the community.
PAARCC members regularly participate as presenters on topics related to neurodiversity inclusion. PAARCC co-presents with CeFAR faculty on how to best support autistic people, including presenting continuing education presentations to UPMC staff and healthcare professionals.