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
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Executive Summary

Read the Executive Summary
Research agenda report cover.

Full Research Agenda

Read the Research Agenda

About Patient-centered Outcomes Research

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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)

Visit pcori.org
A group sits working together at a conference table with laptops and documents in front of them.

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)
Visit pcori.org
A diverse group of people sitting together showing hand gestures that suggest conversation and collaboration.

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)

Visit pcori.org

Centers for Disease Control and Prevention’s “Learn the Signs. Act Early.” Program

Screenshot of the learn the signs act early website showing a banner reading ''help your child grow and thrive' with a mother holding a young child.

Centers for Disease Control and Prevention’s “Learn the Signs. Act Early.” Program

Visit the “Learn the Signs. Act Early.” website
Illustrated book cover showing people of all ages gathered at a block party, titled Mr. Marshalls Block Party.

Mr. Marshall's Block Party

An e-book by Act Early DC to support Black families in monitoring their child’s development.

Download Mr. Marshall’s Block Party

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 resources document with a colorful patterned heading of blues, red, and orange, and a woman sitting peacefully outdoors.

Self-care Tips to Get You Started

Family Voices

Fact Sheet
View/download fact sheet
Self-care affirmations document with a colorful patterned heading of blues, red, and orange.

Self-care Affirmations

Family Voices

View/download self-care affirmations
Care mapping activity worksheet with a colorful patterned heading of blues, red, and orange.

Care Mapping Activity

Family Voices

View/download activity
Reader's guide document broken into sections with bullets and labeled 1, 2, 3

Reader’s Guide: We Dare Be Brave: African American moms and the emotional journey of raising children with disabilities

View/download guide

Autism Resources

Autism acronyms and abbreviations document listed alphabetically, with a colorful patterned heading of blues, red, and orange.

Autism Acronyms and Abbreviations You Should Know

Adapted from “Common Acronyms Used in Autism” by The Autism Community in Action (TACA)

Fact Sheet
View/download fact sheet
Where to go for help document with a colorful patterned heading of blues, red, and orange.

Where to Go for Help

Family Voices

Fact Sheet
View/download fact sheet
Care mapping activity worksheet with a colorful patterned heading of blues, red, and orange.

Videos about Autism for African American Families

Philadelphia Autism Project

Video
Visit phillyautismproject.org

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.

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Our Vision

With families at the center of health care, all children and youth reach their full potential and health disparities are eliminated.

Our Mission

Family Voices is a national organization and grassroots network of families and friends of children and youth with special health care needs and disabilities that promotes partnership with families—including those of cultural, linguistic and geographic diversity—in order to improve health care services and policies for children.

In honor of