Community Autism Research Ambassador Program
Resources
A Patient-Centered Autism Research Agenda to Engage the African American Community
A guide to change the landscape of autism research and create the conditions for true engagement and equitable outcomes for the African American autism community
About Patient-centered Outcomes Research
The PCORI Approach to Patient-Centered Outcomes Research
This interactive PDF introduces you to patient-centered outcomes research and how it is different from traditional healthcare research. (10 minutes)
Engaging in Stakeholder Driven Research
In this video-based module, patients, clinicians, and members of the PCORI healthcare community describe engagement in stakeholder-driven research. (20 minutes)
Developing Research Questions
This module explains how studies are created through research questions, and the kinds of questions that patient-centered outcomes research tries to answer. (30 minutes)
Centers for Disease Control and Prevention’s “Learn the Signs. Act Early.” Program
Centers for Disease Control and Prevention’s “Learn the Signs. Act Early.” Program
Mr. Marshall's Block Party
An e-book by Act Early DC to support Black families in monitoring their child’s development.
Self-care for self-advocates and caregivers (downloads)
What is self-care?
- Self-care is the act of caring for yourself.
- It is different for everyone.
- Self-care needs to be practiced every day.
- It is about doing less and moving away from your to-do list.
- To give more to your loved ones, you must first give to yourself.
Free Downloads
Self-care Tips to Get You Started
Family Voices
Fact Sheet
Self-care Affirmations
Family Voices
Care Mapping Activity
Family Voices
Reader’s Guide: We Dare Be Brave: African American moms and the emotional journey of raising children with disabilities
Autism Resources
Autism Acronyms and Abbreviations You Should Know
Adapted from “Common Acronyms Used in Autism” by The Autism Community in Action (TACA)
Fact Sheet
Where to Go for Help
Family Voices
Fact Sheet
Videos about Autism for African American Families
Philadelphia Autism Project
Video
This project was funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (EASC-IDD-00251). The views presented are solely the responsibility of the authors and do not necessarily represent the views of PCORI, its Board of Governors or Methodology Committee.
Encourage confidence to act