By Stephanie Keeney Parks
I am a mother of two children, and my oldest child was diagnosed with autism ten years ago this year. Like many parents with children who have autism, my family is African-American, and thus we have a culturally unique experience with disability. It was my family’s experience at the intersection of disability and race that led me to my current research as a Ph.D. student in the anthropology department at UCLA. My work centers on African-American parents of children with autism and the health care and autism service disparities that affect this population and that have a far-reaching impact in the classroom and beyond.
Disparities in autism care begin with the diagnostic process within the medical system. Several recent academic public health studies have shown that African-American children are under-diagnosed compared to White American children. “White children are about 19 percent more likely than Black children…to be diagnosed with autism,” according to the Spectrum News, and Black children are also diagnosed later. “As a result, African American children may require longer and more intensive intervention,” which winds up costing far more.
Black children are misdiagnosed more often than White children. ADHD, adjustment disorder, and conduct disorder are among the most common misdiagnoses. This may help explain the seeming contradiction between the fact that African American kids are under-diagnosed for autism but are over-identified for special education services at LAUSD. Misdiagnosis can result in school placement and services that are inappropriate for children with autism.
Even when African-American children do obtain an autism diagnosis, they are still subjected to disparities in accessing autism services in both medical and educational settings. Factors such as poverty, poor access to quality education, unemployment and inability to access health insurance are often cited as reasons African-American families don’t receive the same supports and services as their White peers.
My research, however, suggests that the main problem subjecting African-Americans to disparities in autism services and care is simply being Black. This includes the use of African-American language, African-American-specific behaviors such as signification (a common feature of Black English in which Black artistic culture, such as music, is incorporated into speech), or any other use of language or embodiment that can be perceived as stereotypically African-American by the clinical staff that these families encounter during their health care interactions.
I spent a significant amount of time researching how doctor-patient interactions create and maintain autism service disparities. I saw, for example, that when African-American parents used language specific to our culture such as the word “whoopin,” which means spanking, the clinical staff immediately imagined a situation where the parents were beating the child. This led to a discussion about calling child protective services. In the same block of appointments, a White child told the clinician that their parent was “beating" them with a shoe. But the response was very different. In this instance, the clinicians determined that the mother was “emotionally unavailable,” and ultimately offered her support services including respite (the allocation of a highly trained child caretaker for a block of hours). My observations of this kind of behavior and the dismal outcomes for African-Americans within clinical spaces are more common than not.
Clinical racism is also seen in the diagnostic phase of autism. (Clinical racism is often implicit, but implicit bias is still racism and results in inequitable treatment and care options for these families.) I have watched clinical faculty teach medical students that “culture is not important” to consider within the framework of testing for autism, but “response is important.” This is problematic because the way one responds to another person is framed by culture. Disability and the various categories used in diagnosis do not exist in a vacuum. Disability, like any other life experience, is experienced in one’s culture. Without understanding how that culture shapes behavior, misunderstanding during the diagnostic process occurs.
During one of my observations, a White clinician rated an African-American child’s culturally specific behavior (answering a question with a hip-hop lyric) as “disruptive” and “inappropriate,” thus altering the score on the test. This could lead to an incorrect diagnosis and the child receiving the wrong services. These scores are often used by school districts to make important decisions about a child’s educational path.
My data sample represents families that meet all of the “ideal” markers, in other words, all of the life milestones that African-Americans are told to obtain if they want to have equal access to the American dream. Except for one family, the entire sample was middle to upper middle class, two-parent, heterosexual, and all possessed at least a bachelor’s degree. The majority had some form of advanced degree. However, out of the twenty-two families in my research sample, 17 were subject to significant disparities in access to autism services and care compared to their White counterparts, whether a different nature or caliber of service, fewer hours of service, or some combination of these. Clearly, not education, money, nor access to insurance will save you from being African-American in the clinic.
The disparities in autism services and care transfer directly to the educational space. When African-American families are unable to access equitable autism diagnoses, services, and care, they are then unable to present to the school district the information that may very well shape the Individual Education Plan (IEP). Without an appropriate diagnosis, the supports in the IEP will not protect the child, nor meet the child’s educational needs. Furthermore, autism care and services that are provided outside of the school setting, such as speech, occupational therapy, and applied behavioral analysis (ABA) to name a few, and which are often essential in helping teach a child the skills to be comfortable and productive in the classroom setting, are not being equitably accessed by African-American families.
The disparities faced by African-Americans receiving special education services, which is the case with the majority of autistic children, are especially disconcerting. Some studies suggest that not only is the school system a pipeline to prison for African-American children, but even more so for kids in special education, who are often segregated from typical peers into special classes.
According to a report from the National Council on Disability, “Up to 85 percent of youth in juvenile detention facilities have disabilities that make them eligible for special education services, yet only 37 percent receive these services while in school. A disproportionate percentage of these detained youth are youth of color. These statistics should lead to the conclusion that many disabled youth in the juvenile justice and criminal justice systems are deprived of an appropriate education that could have changed their School-to-Prison Pipeline trajectory.” The report continues: “Schools suspended students with disabilities and students of color at many times the rate of their white counterparts,” and, “Schools suspend students of color with individualized education plans (IEPs), whether they have disabilities or not, to the most disproportionate degree."
Because all the systems and parts in the clinical and education settings work so closely together, and because racism is so deeply entrenched in every space, the effect is like domino blocks that keep pushing kids into worse and worse positions. These are hard truths that are not easy to talk about, and they are even harder to accept. However, if the objective is to treat every child in this country as equal, we have to come face to face with racism in both the clinical and school settings. We also need to be able to consider disability as a naturally occurring, lived way of being that is experienced at the intersection of many identities, including culture. We must become responsive to disability as a cultural experience if we are going to dismantle health and education disparities. Otherwise, we will continue to lose generations of African-American children with autism.