Advancing the Quality of Health Care Transition for Black Autistic Adolescent Girls

Funded by the WITH Foundation (March 2023 – July 2024)

Project goal

This project engaged Black women self-advocates and family advocates to develop and disseminate educational materials about barriers to diagnostic supports for Black girls and women with autism, as well as recommendations to address the unique needs of this intersectional population across the lifespan, with a focus on the transition from pediatric to adult health care.

What we know

• Girls are less likely than boys to receive a timely diagnosis of autism.
• Black children are more likely to experience misdiagnosis and extremely delayed autism diagnosis.
• Autistic Black girls, at the intersection of these disparities, experience the impact of both.
• The challenges of getting a diagnosis can exist through late adolescence and young adulthood, often leading to negative educational, medical, and employment outcomes, high anxiety, low self-esteem, and suicidal ideation.
• Even with the knowledge of emotional and physical risk faced by Black autistic girls and women, the literature is disturbingly silent on their experiences and needs.

Constantino, 2020; Maenner et al., 2021; Lovelace et al., 2018; Purtway & Johnson, 2005

What we learned

In this project, we learned about the health care experiences of Black autistic girls and women, including those who are self-diagnosed, to inform recommendations and strategies for health care providers to improve engagement and access to equitable health care. 

What we developed

The staff and product development team, composed of 5 Black autistic women and two caregivers, worked together to develop multi-modal tools for primary care providers and families to better understand the health care and health care transition (HCT) needs of Black autistic adolescent girls. The tools can be found at Resources | Center for Transition to Adult Health Care for Youth with Disabilities – Family Voices.

• Supporting Black Autistic Girls in the Transition to Adult Health Care – Providers Guide
• Understanding Black Family Relationships – for Health Care Providers
• Engaging and Supporting Black Autistic Girls and Their Care Partners in the Health Care Setting
• Preparing for a Health Care Visit with Black Autistic Girls – for Providers
• Supporting Black Autistic Girls in the Transition to Adult Health Care – Guide for Self-Advocates and Families
• Preparing for a Health Care Visit – Guide for Self-Advocates and Families
• Working with a Care Partner – Guide for Self-Advocates
• Stepping in as a Care Partner – Guide for Families
• Finding the Right Fit with Your Health Care Provider – Guide for Self-Advocates
• Working with a Care Partner and Stepping in as a Care Partner – Video for Self-Advocates and Families
• Preparing for a Health Care Visit – Video for Self-Advocates and Families