What is PAARCC?
PAARCC is a group of eight adults - including autistic adults, parents of autistic children, and community allies - that meet monthly with University of Pittsburgh Autism Researchers. We work on generating research ideas, provide oversight and accountability to researchers, and share valuable lived experience with autism researchers. PAARCC works together to ensure that science is meaningful to and mindful of the autistic community.
History of the Group:
PAARCC was integral to the Autism Center of Excellence (ACE) grant proposal and serves as the central community based participatory research hub for the center. The group was founded by Dr. Kelly Beck of the University of Pittsburgh in December of 2021 towards this goal. PAARCC is now co-led by Dr. Kelly Beck and Jamie Upshaw, MS, MA, 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. 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 (ACE) project. Our group has worked on research protocols, ensuring research is inclusive and accessible to the community. PAARCC also works on advertising and other materials to share this science with the autistic community. This team met for the first time in 2023.
Additionally, 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.
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 students.
PAARCC members regularly participate as presenters on topics related to neurodiversity inclusion. PAARCC members co-present with Core REAACT faculty on how to best support autistic people, including presenting continuing education presentations to UPMC staff and healthcare professionals.
- What is a research community partnership?
Research has chronically excluded autistic people. Community-based participatory research (CBPR) focuses on making the community that is being studied an important part of the research process. It is not just tokenism; it strives to create an equal and mutually beneficial partnership between the autistic community and researchers. Autistic community members are involved in every part of the research process, from creation of ideas to collecting and analyzing data.
This helps to make research priorities align with community priorities, resulting in community needs being met. It also creates better, more accurate results. When people that truly understand the needs of community members are involved in creating surveys, data becomes more accurate and meaningful. Additionally, it helps to build trust between researchers and the community, which is especially important due to the historic marginalization and exclusion of autistic people from the research that is about them.
- How does PAARCC help affirm neurodivergent people?
PAARCC and the REAACT lab strive to be neurodivergent affirming. PAARCC and REAACT recognize that neurodiversity is a necessary and natural part of the human condition that helps to generate new ideas and perspectives. Neurodivergence is not something to be cured; we focus on research to improve quality of life. Accommodations are made regularly available for all staff and research participants.
- Why do you use identity-first language?
Our PAARCC group members voted on language preferences in our first meeting. The group voted to use identity-first language.
Many autistic self-advocates prefer identity-first language (i.e. autistic person) vs person-first (i.e. person with autism) language. This emphasizes that autism is an identity and decreases stigma and disordered language. However, we understand that every autistic person is an individual with their own preferences for how they identify and will respect their choice.