(Above is a YouTube video about African American families with children with ASD titled, “Autism for African American Families: Part 1: Wondering and Worrying”)
African American children are diagnosed with Autism Spectrum Disorders (ASDs) later than white children and at lower rates, although it is believed that prevalence rates are equal amongst all demographics. What could account for these differences? A combination of cultural, economic and phenotypic differences are likely involved in the disparities experienced by African American children with ASD.
- Reliance on the family
- Advice is requested primarily from family
- Negative experiences with the healthcare system
- Not feeling listened to
- Lack of belief that African American children can have ASD
- ASD is a white experience
- Families below the poverty rate have less awareness of ASD symptoms
- Decreased access to healthcare
Difference in Presentation of ASD Symptoms
- African American parents express more early concerns for physical abilities
- African American children with ASD have:
- Greater communication delays
- Fewer restrictive interests and repetitive behaviors/ movements
- More likely to be misdiagnosed with Conduct Disorder before receiving an ASD diagnosis
The earlier a child with ASD can begin to receive services designed to address the core deficits of Autism, the better their language and behavioral outcomes may be. Unfortunately, in addition to the disparities in diagnosis, African American families are rarely involved in ASD research. It is difficult to say whether evidence-based practices (EBPs) are valid or culturally acceptable for African American families.
So, what can be done to help African American families access earlier ASD diagnoses, ASD information and knowledge about EBPs? More research focusing on African American families and children with ASD is needed to assess and possibly adapt interventions for this population. Increased outreach in African American neighborhoods and increased education for primary care providers in the differences in concerns and presentation of ASD in African American children.
Parent to Parent programs could provide valuable support for parents in this community. Parent to Parent matches help-seeking parents with a trained supporting parent by child characteristics, parent needs and cultural factors. The information and emotional support provided by supporting parents could empower parents to access more services, reduce parenting stress and increase parenting efficacy.
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(10), 3244-3254.
Data Resource Center for Child and Adolescent Health. (2011). Survey of Pathways to Diagnosis and Services [Data file]. Retrieved from http://childhealthdata.org/learn/pathways/data.
Gourdine, Ruby M., and Carl L. Algood. “Autism in the African American population.” In Comprehensive guide to autism, pp. 2455-2467. Springer New York, 2014.
Santelli, B., Turnbull, A. P., Marquis, J. G., & Lerner, E. P. (1995). Parent to Parent programs: A unique form of mutual support. Infants & Young Children, 8(2), 48-57.
Sell, N. K., Giarelli, E., Blum, N., Hanlon, A. L., & Levy, S. E. (2012). A comparison of autism spectrum disorder DSM-IV criteria and associated features among African American and white children in Philadelphia County. Disability and health journal, 5(1), 9-17.
Tek, S., & Landa, R. J. (2012). Differences in autism symptoms between minority and non-minority toddlers. Journal of autism and developmental disorders, 42(9), 1967-1973.