• What behavior are we targeting?
• Is it appropriate for our client?
• How is this goal specific?
• Is the goal observable?
• What does mastery look like?

• 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)

• Talk about school and highlight the fun and exciting things they will get to do. Remember what was most reinforcing at school for your child last year, and help them to remember that, too.  Did they love PE or music or art?  Are they especially talented in math or writing?  Do they have certain friends they like to play with at recess?  Is the cafeteria pizza their absolute favorite?  Is the walk to and from school something they enjoy? 
• Provide information about the coming year as you are able to.  If your child will be starting school in a new building, make arrangements to visit the building a few times over the summer.  Most schools will have these visit days or orientations arranged for all students, but you may be able to request an extra visit or two for a child who would benefit from some additional exposure. 
• When you make those visits, take some pictures and use them to develop a book or poster with your child that they can refer to as the summer progresses.  Don’t just refer to the pictures if your child expresses anxiety or disappointment about school starting, but as a regular activity to build familiarity and (hopefully) anticipation.
• Pay attention to your family sleep schedule.  Sometimes the summer schedule can get a little loose, which may be great for everyone.  We can all benefit from sleeping on our own natural schedule, but if that natural schedule departs in a big way from what will be needed during the school year you will want to start to gradually shift it back.  To make the change less abrupt, in the weeks before school starts again, start to wake your child a bit earlier every day and get them to bed a bit earlier each night. 
• If your child is always an early waker, you might want to take advantage of a more relaxed summer schedule to focus on building independence in the morning routines.  During the busy school year it can be challenging to take the time to let your child learn to do things independently, but summer is a great time to let them dress themselves, brush their own hair, and do other self-care tasks with your supervision.
• Consider the routines that make your school-year mornings work well, and continue to practice them during less-stressful summer mornings.  Keeping a reasonably structured routine throughout the summer, or reintroducing it a few weeks before school starts, can help everyone to adjust to the return to school more smoothly.
• If possible, connect with parents of some of your child’s classmates and see if you can get them together over the summer.  If social skills are difficult for your child, keep these playdates short and sweet.  Try meeting up in enjoyable locations like the park or beach, and letting kids parallel play so that they are used to seeing each other.  Pair these little gatherings with favorite snacks, fun activities that can be done together or alone (bubbles, sidewalk chalk, play-doh, jumping through a sprinkler), and remind the children that they will be seeing each other and playing more together when school starts.
• For some children, school represents a return to certain demands that may not be present during the summer.  If your child has sensitivities around clothing or food, you may be able to accommodate these more when they are not in school.  While this is absolutely fine to do, it can be difficult if they need to abruptly shift back to different expectations when school starts again.  Children who love to stay in their pajamas or bathing suits might be unhappy about school clothes, or those who get used to a hot, home-cooked lunch might not appreciate going back to sandwiches.  Keeping some of these expectations part of the summer rotation can ease that stress.  To whatever extent it feels comfortable and fair for your child and your family, continued exposure to school-year conventions are going to make the return to school easier for everyone.