By: May Chriseline Beaubrun, MEd, BCBA (Brett DiNovi & Associates)
Prior to offering some global suggestions, I wanted to highlight some of the available research that explains of the unique experiences of Black families of children with autism. Although autism does not discriminate (across race, ethnicity, culture, socio-economic status, etc.), diagnosis, access to resources, treatment options, and culturally competent care can vary vastly for Black families with children with autism (Čolić et al., 2021). For example, Black children with intellectual disabilities receive an autism diagnosis an average of six months later than comparable white children (Dryden, 2020). Mandell et al. (2002) found that Black parents on average made three times more visits to doctors to obtain an autism spectrum disorder (ASD) diagnosis than their white counterparts. Dyer (2018) found that Black parents had seen multiple specialists before their children finally received a diagnosis. These setbacks in diagnosing Black children translate into a delay in skill acquisition, reduced access to early intervention, and an increased risk of challenging behaviors (Čolić et al., 2021). Also, an estimated 47 percent of Black autistic children also have an intellectual disability, compared to 27 percent of white children (Dattaro, 2020); and these delays in autism diagnosis may be a contributing factor in the high rate of intellectual disability among Black autistic children in the United States.
Constantino et al. (2020) examined the experiences of Black families affected by ASD in the United States. The researchers found that Black families were concerned about a child’s development, language, or behavior. The study consisted of interviews of 584 parents of Black children with autism. The authors compiled timelines of the Black families’ experiences, including the developmental outcomes of the autistic children and their siblings. The following sections describe the two most important findings:
- Timeline To Diagnosis: The authors found a three-year delay in diagnosis. The parents first noted concerns about their child’s development around 23 months of age; told a professional six months later; and did not receive an autism diagnosis until their child was over 5 years old.
- Timeline to Treatment: More than a third of the families reported long wait times to see a professional; 14 percent made at least six visits to specialists before their child was diagnosed. Nearly a third said that a lack of available professionals contributed to the diagnostic delay.
- Additional Barriers: More critical than the timing of diagnosis is educating Black families about the signs of ASD. This means that due to the lack of educational information and programs for Black parents in their community, they had to learn about ASD by themselves, very often through the internet (Burkett et al., 2015; Lovelace et al., 2018). The internet is useful for accessing quick information, such as directions, office hours, etc., but can be dangerous when researching treatment options (see this article for more information). Additionally, the disparities continue beyond the time of diagnosis to access to intervention services (Constantino et al., 2020). For example, in the Čolić et al. (2021) article, Black parents reported that practitioners would assume that they did not have private insurance. When assuming someone does not have insurance, they may not be offered the benefits of treatment options that are available.. Also, as reported in Čolić et al. (2021), community-based instruction was often not offered in the belief that their neighborhood was dangerous and violent. Beyond getting a diagnosis, these confounding variables continue to impact Black families’ ability to access services.
- Intellectual Disability Disproportionality – Disproportionality refers to a situation in which a particular group (e.g., racial, ethnic, etc.) are represented at a higher or lower percentage than their percentage in the general population. Although the diagnostic prevalence of autism is approximately the same across races (Mandell et al., 2009), there is a disproportionality of Black children who have a diagnosis of autism and have an intellectual disability. Similar to the findings of Dattaro (2020), the U.S. Centers for Disease Control and Prevention, show that 22% of white children with autism also have an intellectual disability but among African American children, the rate of intellectual disability in those with autism is over 44% (Dryden, 2020).
- Poverty – Poverty which disproportionately affects Black families in the U.S, is associated with worse cognitive outcomes (Constantino, 2020). However, there are no links between the autistic children’s intelligence quotient (IQ) and their family’s income or parents’ education, meaning the increased prevalence of intellectual disability among Black autistic children cannot be attributed to poverty (Sohn, 2020).
- Quality of Treatment: In the Magaña, Parish, and Son (2015) article, data from the 2005-2006 and 2009-2010 National Survey of Children with Special Health Care Needs were analyzed. The results indicated that racial and ethnic disparities in the quality of provider interactions were significant in both the 2005-2006 and 2009-2010 surveys, and were found to be unchanged over time. More so, these racial and ethnic disparities in healthcare quality were found to be unchanged over time. Black families were less likely than white and Latino families to feel that their provider helped them feel like a partner. They were also less likely to feel that the provider spent enough time with them; that the provider was sensitive to their family’s values; and that the provider listened to them. In my opinion, this is still a relevant issue and remains to be unchanged.
I hope I was successful sharing some of the recent research that shines a light on the myriad challenges facing Black families. I would like to now turn our attention to the final part of your question: how can myself and my colleagues better meet the needs of Black families I serve? Čolić et al (2021) identify four main areas where ABA practitioners should be especially sensitive to move towards culturally responsive ABA practice (a) build knowledge about Black cultural values, (b) show care and strengthen partnerships, (c) create culturally relevant interventions, and (d) be aware of one’s own prejudice and cultural values.
- Build Knowledge about Black Cultural Values: During the initial intake and throughout the treatment, ABA practitioners, like yourself, can learn about the Black families’ culture, such as family dynamics, religious and spiritual beliefs, self-care, etc. and incorporate these considerations into treatment planning. Families should be included in the process which in term will lead to improved outcomes and program efficacy (Mathur & Rodriguez, 2021).
- Show Care and Strengthen Partnerships: ABA practitioners must recognize the potential barriers Black families may have had to overcome prior to even requesting and accessing your services. Training on cultural diversity and cultural humility is needed to provide culturally responsive services. The families should feel comfortable advocating for changes to programs without feeling judged (Mathur & Rodriguez, 2021).
- Create Culturally Relevant Interventions: When developing and implementing treatment goals, ABA practitioners should increase cultural humility. For example, when creating materials such as icons and pictures for communication, rule cards, visual cues, etc. the skin tone should represent that of the client, including a Black individual. When creating classroom rules and expectations, consider culturally responsive behavior management so that all students with equitable opportunities for learning. For example, use proactive language that is clear and reflects the student and the family voice.
- Be Aware of One’s Own Prejudice and Cultural Values: ABA practitioners should recognize the impact that implicit bias and racism have on the efficacy and efficiency of behavioral analytic support services (Mathur & Rodriguez, 2021). Training in cultural humility should also include ABA practitioners recognizing their own implicit bias. Fong et al. (2016) illustrated how assumptions based on culture can impact a behavior analyst’s effectiveness with families of diverse backgrounds. Rather than make assumpations, seek sonculatation and supervision as needed. Treating one black family makes a practioner experienced in treating with one black family. For example, using a teaching set of community helpers who are all white males contributes to white supremacy.
Addressing the issues in the timing of diagnosis and the quality and quantity of treatment may help resolve disproportionately of Black children who have a diagnosis of autism and have an intellectual disability. I remain concerned about the implicit bias of providers that goes unchallenged, and that Black families will continue to feel unheard and not receive the same type of treatment as their white and Latino counterparts. As a BCBA, I am advocating for culturally responsive ABA practice.
References
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. https://doi.org/10.1007/s10803-015-2482-x.
Constantino, J. N., Abbacchi, A. M., Saulnier, C., Klaiman, C., Mandell, D. S., Zhang, Y., … & Geschwind, D. H. (2020). Timing of the diagnosis of autism in African American children. Pediatrics, 146(3).
Dattaro, L. (2020, August 24). Diagnosis timeline drags for Black autistic children. Spectrum News. https://www.spectrumnews.org/news/diagnosis-timeline-drags-for-black-autistic-children/
Dryden, J. (2020, August 23). African American children with autism experience long delays in diagnosis. Washington University School of Medicine in St. Louis https://medicine.wustl.edu/news/african-american-children-with-autism-experience-long-delays-in-diagnosis/
Fong, E. H., Catagnus, R. M., Brodhead, M. T., Quigley, S., & Field, S. (2016). Developing the cultural awareness skills of behavior analysts. Behavior Analysis in Practice, 9(1), 84-94. https://doi.org/10.1007/s40617-016-0111-6.
Lovelace, T. S., Tamayo, S., & Robertson, R. E. (2018). Experiences of African American mothers of sons with autism spectrum disorder: Lessons for improving service delivery. Education and Training in Autism and Developmental Disabilities, 53(1), 3-16.
Mandell, D. S., Wiggins, L. D., Carpenter, L. A., Daniels, J., DiGuiseppi, C., Durkin, M. S., Giarelli, E., Morrier, M. J., Nicholas, J. S., Pinto-Martin, J. A., Shattuck, P. T., Thomas, K. C., Yeargin-Allsopp, M., & Kirby, R. S. (2009). Racial/ethnic disparities in the identification of children with autism spectrum disorders. American Journal of Public Health, 99(3), 493-498. https://doi.org/10.2105/AJPH.2007.131243
Magaña, S., Parish, S. L., & Son, E. (2015). Have racial and ethnic disparities in the quality of health care relationships changed for children with developmental disabilities and ASD?. American Journal on Intellectual and Developmental Disabilities, 120(6), 504-513.
Mathur, S. K., & Rodriguez, K. A. (2021). Cultural Responsiveness Curriculum for behavior analysts: A meaningful step toward social justice. Behavior Analysis in Practice, 1-9.
Sohn, E. (2020, April 15). The blurred line between autism and intellectual disability. Spectrum News. https://www.spectrumnews.org/features/deep-dive/the-blurred-line-between-autism-and-intellectual- disability
Citation for this article:
Beaubrun, M (2022). Clinical Corner: Understanding the needs of Black families of children with autism. Science in Autism Treatment, 19(4)
Author Bio: May Chriseline Beaubrun has been a Board Certified Behavior Analyst for over 10 years. She is currently the Director of Diversity & Training at Brett DiNovi & Associates. She has worked with children and adults with various cognitive, developmental, and physical disabilities in a variety of settings (e.g., clinic, hospital, home, school). She has completed program evaluations; developed skill acquisition programs to teach academic areas, cognitive functioning, social skills, language and communication, and adaptive skills; provided parent training; conducted functional behavior assessments (FBA); developed Behavior Intervention Plans (BIP), program evaluations and provided staff training to various levels of professionals. May has presented at the annual Autism New Jersey convention (formerly Center for Outreach and Services for the Autism Community) as well as Association for Behavior Analysis International, New Jersey Association for Behavior Analysis, and California Association for Behavior Analysis. May also was an adjunct professor at Philadelphia College of Osteopathic Medicine. May contributed a chapter to the text, A Scientific Framework for Compassion and Social Justice, on behavior analysis and urban planning. May’s areas of interest include cultural responsiveness and social justice.