Overview of the Primary Care Node

Drs. Alice Kuo & Kristen Choi

Mission: Autistic young adults and their families struggle to find primary care providers who understand their needs. The overall goals of the Primary Care Services and Quality research
node are to increase life span and maximize quality of life. In order to attain these goals, primary care for Autistic adults needs to improve.

Research Agenda: Autistic adults have a higher prevalence of co-occurring medical conditions yet experience limited access to high-quality primary and preventive care services throughout the life course. The deficit in primary and preventive care services faced by Autistic individuals, as well as the increased prevalence of various chronic medical conditions, is related to a range of factors, including a lack of physician training for working with Autistic individuals. Interventions are needed to bridge the existing gaps in primary and preventive care and to address the increased prevalence of chronic health conditions in Autistic individuals. Care for Autistic individuals should incorporate guideline-driven practices provided to the general population and personalized accommodations to improve care delivery. Specific research priorities for the Primary Care Node include promoting Autistic individuals’ self-determination in health care, enhancing primary care provider training, and mental health and psychiatric care.

Responsibilities of Primary Care ANSWER Reps

  • Attend node meetings 1-3 times per year to provide input on node projects and activities
  • Participate in setting goals, priorities, and node planning
  • Review node products and provide input 1-3 times per year

We are looking for individuals with the following experience:

  • Autistic/Neurodivergent lived experience AND prior graduate-level training.

Preferred Qualifications for Primary Care ANSWER Reps:

  • Prior experience/knowledge of academic processes including abstracts, posters,
    manuscripts, and grant proposals
  • Active CITI training or other research ethics training (e.g., TCPS 2: CORE-2022) and
    review of introductory materials
  • Background in autism and knowledge of/interest in primary healthcare
  • Willingness to provide constructive feedback and be responsive in communication with node leadership
  • Ability to work effectively in a team of researchers with a diversity of opinions