National Health Care Transition Resource Center
For Youth and Young Adults with Intellectual and Developmental Disabilities

Logos of Family Voices, Got Transition, UMKC Institute for Human Development, and Span Parent Advocacy Network.

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

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

Project goal

This project will engage 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.

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 hope to learn

In this project, we will learn 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 are developing

By the end of this project, the staff and product development team will work together to develop eight multi-modal tools for primary care providers to better understand the health care and health care transition (HCT) needs of Black autistic adolescent girls.

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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.

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