Reducing Disparities in Care for Black Toddlers with Autism Through Partnerships with the Black Community
Christina Corsello Orahovats, Ph.D.
There are more children diagnosed with autism spectrum disorders (ASD) now than ever before, with the most recent numbers from the CDC suggesting as many as 1 in 44 children with the diagnosis (Maenner, et. al., 2021). While there is substantial evidence that early intervention contributes to improved outcomes and that we can accurately diagnose ASD in toddlers as young as 2 years, the average age of diagnosis for Black children remains around 5 years of age (Constantino, et. al., 2020). Even more concerning is that the diagnosis is made an average of 3 ½ years after a parent’s first concerns (Constantino, et. al. 2020). Cleary, there is a disparity in care for Black children with ASD, which is a huge concern in North Carolina, a state in which almost 22% of the population is Black according to the US Census.
While The UNC TEACCH Program has been effective at reaching the Black families of NC in many ways, we still see disparities at the youngest ages. Approximately 22% of families seen at TEACCH are Black, consistent with the NC Census. However, we are reaching far fewer of our families of Black toddlers. For those under the age of 3 years seen at TEACCH, only 14% of the families are Black. This is a considerable issue as we know that early intervention can make a positive difference in outcomes.
So, the question is why do we see this disparity at these young ages and what can we do to reduce it? There are many barriers to care that Black families encounter when seeking services that have been identified in the literature. In addition to barriers that can affect any under-represented group, such as transportation issues, proximity to quality care and long wait times, there are also cultural factors that affect timely access to care. Parents of Black toddlers report a lack of trust in the medical community and providers in the autism community are no exception (Burkett, et. al., 2015). Some families report that they suffer from discrimination when seeking services, may have had negative experiences with medical providers in the past, and mothers may worry that their attempts to advocate for their children may be misperceived as aggressive (Pearson & Meadan, 2018 ). Cultural differences between clinicians and parents have been cited as an issue, with parents feeling misunderstood. There is also evidence that health care providers tend to be more verbally dominant with Black families, contributing to the family getting less information and feeling less engaged (Pearson, Meadan, Malone & Martin, 2019). There are far too few Black clinicians and providers in the field of autism, which compounds this issue.
If we are truly committed to decreasing disparities and access to care, it is important not only to understand barriers to care, but equally critical to understand facilitators to accessing care and strengths of the Black community. Families who have successfully accessed care for their child have emphasized the importance of advocacy and the power of community networks, both professional and personal, including family and church involvement (Lewis, E., et. al., 2022).
We still have a long road ahead to address disparities in early intervention services for Black families of toddlers with ASD. In the meantime, we should continue to acknowledge the challenges that exist for Black families, make every effort to practice cultural humility and provide family centered and culturally responsive care, continue to focus energy on training the next generation of providers with a focus on increasing the number of Black providers in the field, and provide information and resources in partnership with the Black community. The UNC TEACCH Autism Program recently received funding from the C Felix Harvey Foundation to launch a collaborative project with the Autism Society of North Carolina to partner with the Black community to identify needs and create an interactive web-based platform designed to provide personally tailored information to help families make informed decisions about early intervention services for their toddlers. For more information visit the TEACCH website: www.TEACCH.com.
Burkett, K., Morris, E., Manning-Courtney, P., Anthony, J., & Shambley-Ebron, D. (2015). African American Families on Autism Diagnosis and Treatment: The Influence of Culture. Journal of Autism and Developmental Disorders, 45, 3244-3254.
Constantino, C., et al. (2020). Timing of the Diagnosis of Autism in African American Children. Pediatrics, 146, 1 -10.
Kim, K., et al. (2022). A culturally grounded autism parent training program with Black Parents. Autism Volume 26, Issue 3.
Lewis, E., et. al. (2022) The creator did not give me more than I can handle: Exploring coping in parents of Black autistic children, Autism, Online.
Maenner, M., et. al. (2021). Prevalence and Characteristics of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2018 Surveillance Summaries / December 3, 2021 / 70(11);1–16.
Pearson, J. & Meadan, H. (2018). African American Perceptions of Diagnosis and Services for Children with Autism. Education and Training in Autism and Developmental Disabilities, 53, 17 – 32.
Pearson, J. Meadan, Malone & Martin (2019). Parent and Professional Experiences Supporting African American Children with Autism. Journal of Racial and Ethnic Health Disparities, 7, 305-315.
Dr. Christina Corsello Orahovats, Ph.D. began her work with children and adults with autism spectrum disorder 26 years ago when she completed an internship and post-doctoral training with the UNC TEACCH program. Since that time, she has had the opportunity to work with leaders in the field in the area of diagnosis and assessment of autism spectrum disorders and has published guidebooks, book chapters, and peer-reviewed articles in this area. Currently, she is the Director of Clinical Services at the UNC TEACCH Program and continues to provide training on diagnostic measures and Structured TEACCHing as well as remaining actively involved in research with a continued emphasis on assessment and diagnosis as well as a focus on the underserved.