Written by: Erica Ranade, SSP, NCSP, BCBA, LBA, LPA & Robyn Smith, MSM
With the new updates to The Ethics Code for Behavior Analysts, it is imperative that practitioners consider cultural responsiveness and diversity in Applied Behavior Analysis (ABA). Lack of access to medical treatment has been a longstanding barrier for Black Americans, and this obstacle is further amplified by systemic bias in medicine (Liptak et al., 2008; Magana et al., 2015). Black, Indigenous, People of Color (BIPOC) face frequent discrimination in the healthcare setting and this treatment is particularly relevant in mental healthcare (Barnett et al., 2019; Zuvekas & Leishman, 2008). BIPOC youth are often under-identified as having developmental disabilities, such as autism spectrum disorder (ASD; Morgan et al., 2017). As discussed in this article, delay in the diagnosis and treatment of ASD, identification of comorbid intellectual disability, and overidentification of conduct-related disorders in the Black community highlight these barriers.
ASD is a neurodevelopmental disorder characterized by significant difficulty with social communication and restrictive, repetitive interests and behaviors. According to the Center for Disease Control and Prevention (2021), ASD impacts 1 in every 44 individuals and is prevalent across racial, ethnic, and socioeconomic groups. Despite prevalence across groups, autism is less likely to be diagnosed in BIPOC (CDC, 2021). For individuals to have access to insurance coverage for evidence-based treatment for ASD, such as ABA; it is essential that they receive an accurate diagnosis. The diagnostic process for ASD can be lengthy, spanning across several months. This process is disproportionally longer for Black families (Constantino et al., 2020).
According to The Autism and Developmental Disabilities Monitoring Network (ADDM), White children were 1.1 times more likely to be diagnosed with ASD than Black children in 2014. This is an improvement from 2010, in which White children were 1.3 times more likely to be diagnosed with ASD. Although the prevalence ratio is improving, Black children receive a diagnosis approximately 3 years later than their White counterparts after their parents show concern (Jenco, 2020). According to Constantino et al. (2020), the delay from the time of concern to diagnosis for Black youth was 3.5 years with the average age of diagnosis being 5 years old. The American Academy of Pediatrics recommends developmental screenings at 9, 18, and 30 months and screening for autism at ages 18 and 24 months. Early intervention with any developmental disorder is critical to future cognitive development, and a delay in access to treatment can lead to delayed skill acquisition.
Delay in early intervention services can also lead to higher future rates of intellectual disability, which is characterized by low intellectual functioning and delayed adaptive living skills (CDC, 2021). Approximately one-third of individuals diagnosed with ASD have a co-occurring intellectual disability; however, nearly half of all Black children with ASD are diagnosed with a comorbid intellectual disability (CDC, 2021; Maenner et al., 2021). Historically, when diagnostic rates for ASD were even lower for Black children, it was thought that higher rates of intellectual disability among minority populations were due to the under-identification of intellectually gifted individuals in the community; however, this myth has been dispelled (Constantino et al, 2020). Accurate and timely diagnosis is essential in the treatment of developmental disabilities like ASD as well as the prevention of more intensive symptomology, including comorbid intellectual disability. Delay in diagnosis can lead to longer and more intensive intervention (Gourdine, Baffour, & Teasley, 2011).
Along with the increased prevalence of intellectual disability, delay in diagnosis can also lead to an increase in challenging behaviors (Colic, Araiba, Lovelace, and Dababnah, 2021). This is further complicated by the overidentification of behavioral disorders in Black youth (Morgan et al., 2017; Office of Special Education & Rehabilitative Services, US Department of Education, 2016; Oswald et al., 1999). Behavioral rigidity, instance on sameness, and repetitive interests that are often associated with ASD are often misdiagnosed in the Black population as conduct-related disorders, such as oppositional defiant disorder (Williams, George, & Printz, 2020). Historically, Black children are nearly three times more likely than White children to be identified as having an emotional/behavioral disorder (Losen & Orfield, 2002).
While the impact of delay in diagnosis and misdiagnosis in the Black community is lasting, examining the factors that lead to these disparities is multi-faceted and complex. Broder-Fingert (2020) asserted that the medical community must address the systemic racism that has caused a delay in diagnosis for minority communities. Factors contributing to this delay may include racial bias and discrimination experienced by families, a lack of diversity in health professionals, and the concentration of specialists in geographic areas with fewer minority residents. Broder-Fingert also makes note that a key barrier to not overlook when discussing this problem is that there is often an experience of racism that leads to a lack of trust in the healthcare system. As Broder-Fingert explains, parents are reluctant to have their child assessed when they do not trust or feel welcome within the practice.
While several factors lead to a lack of diagnosis and treatment in the Black community, it is essential that practitioners and stakeholders make efforts to bridge these gaps in service. Behavior analysts and mental health practitioners have an ethical responsibility to provide culturally responsive ABA services (American Psychological Association Code of Ethics, 2016; The Ethics Code for Behavior Analysts, 2022). Colic et al. (2021) recommend that practitioners actively seek information about race and racism to consider how these factors impact service delivery, particularly in the medical system. The ADDM Network recommends outreach directly targeted toward BIPOC communities along with increased screening services in these communities to increase accurate and timely identification of ASD. The American Association for Pediatrics recommends screening children for ASD at 18 and 24 months or whenever parents or providers indicate a developmental concern. Screenings are currently available through First Steps early intervention programs nationwide. Self-screening can be conducted online using the Modified Checklist for Autism in Toddlers – Revised (M-CHAT-R). While screening does not diagnose ASD, it is the first step in determining if further evaluation is needed.