Navigating family messaging: Qualitative experiences of Black caregivers of children with autism

Black caregivers of children with autism express that there are gaps in both knowledge and acceptance of disabilities within their communities. This lack of information and resources provided to Black communities can lead to tensions within families regarding autism diagnoses and how to support individuals with autism in their families. As part of a larger qualitative study, 23 Black caregivers of children with autism shared their experiences with the messages received from family members about their child's autism diagnosis. Two overarching themes emerged regarding family messaging: <i>Lack of Understanding and Denial of Autism</i> and <i>Supportive Acceptance and Inclusion</i>. Six subthemes were identified that highlight the nuance within the messaging content. These findings can inform strategies to develop culturally tailored interventions to support Black caregivers in navigating the range of messages received from family members when their child receives a diagnosis of autism. Further research should build on these findings to investigate how directly this family messaging links to broader messaging in Black culture regarding autism, as well as how both family and cultural messaging may interact with factors such as awareness or use of autism resources, attitudes toward research, and long-term social and behavioral outcomes for Black children with autism.Lay abstractBlack caregivers of children with autism say there are gaps in knowledge and acceptance of disabilities in their communities. This lack of information and resources can cause tensions in families about autism diagnoses and how to support their children. This study talked to 23 Black caregivers to learn about their experiences with the messages they received about their child's autism diagnosis from family members. We found two main themes: <i>Lack of Understanding and Denial of Autism</i>, and <i>Supportive Acceptance and Inclusion</i>. Within these themes, parents shared different experiences, like family members denying autism exists, not wanting to learn about it, or being very supportive and inclusive. Black caregivers also talked about the emotional toll the negative messages take on them. This work is important because it can help create culturally tailored support for Black caregivers of children with autism, so that they can engage with family members in more supportive ways. Future research should look at how these messages affect the use of autism resources, attitudes toward research, and long-term outcomes for Black children with autism.