Diagnosis and Services: Autism is No Longer a “White Person’s” Disease
By, Seema Nikila Kadaba
Autism is characterized by differences in social communication skills and repetitive behaviors. The incidence of autism “has risen from one in 150 children in 2004 to one in 68 children in 2010.” It should be noted that this rise in incidence is likely due to a rise in ability to diagnose autism. Services that help individuals with autism can require up to 25 hours per week of educational and behavioral attention for several years.
Parents of autistic children face many challenges, but those of African-American decent encounter even greater obstacles. African-American children are statistically far less likely to receive an autism diagnosis. Further complicating matters are the complex racial divides in the United States today. For example, imagine attempting to teach your autistic black son how to interact with police and having absolutely no guidance. This is the sometimes life or death situation faced by many in the African-American community. Although the neurodiversity movement has made great strides for autistic people and their caregivers, attention needs to be given to the blatant racial complexities involved. In the school setting, African-American children with autism that exhibit symptoms of their too-often-undiagnosed autism, are often seen as merely engaging in typical “bad behaviors” that should be addressed via punishment rather than services for a legitimate diagnosis. Unfortunately, research and therapy for autism is generally geared toward wealthy, white families, creating grave racial and ethnic inequalities, especially within the classroom.
Studies by the Center for Disease Control and Prevention (CDC) show that rates of autism are identical across racial groups; however, white children are 30% more likely to obtain diagnoses than African-American children. Earlier diagnosis means earlier intervention and better outcomes — this is especially relevant in the school context. If children are able to obtain diagnoses and services, they can, in turn, learn how to excel in school and obtain a well-rounded education. Regrettably, children of color with autism are less likely to receive a diagnosis, and this lowers their chances of obtaining proper services and a balanced education. This also leads to higher rates of suspension and a repeated pattern of punishment in school for children of color with autism.
Another factor that should be taken into account are the economic costs associated with having an autistic child. Average medical expenditures exceed those without autism by $4,110 — $6,200 per year. Moreover, intensive behavioral interventions cost $40,000 to $60,000 per year per child. Frequently, programs provided by the public school system to autistic children are the only means parents can afford to support the services their child needs. Often, students of color attend schools where such programs are nonexistent. This exacerbates the racial factor, further pushing children of color away from the services they need to succeed academically.
Many researchers have stated that the best approach to support children with autism is behavior therapy, as it is the main tool used to develop social skills and abilities. However, without proper support from the community and school systems to diagnose and assist children with autism, functioning in the current societal structure is almost impossible. The applied behavior analysis services plan is highly structured and often reduces many behaviors deemed as problematic by teaching “play, communication, self-care, academic and social living skills.” This level of intensive one-on-one work with autistic children is necessary for them to succeed in the classroom. Without diagnosis, how can students of color with autism obtain services? Furthermore, if programs are only geared to wealthy white families, will this services plan work equally for children of color? These are questions that we must ask and address together as individual communities and as an inclusive society.
Students of color need to obtain diagnosis at early stages, and the school system at large must support early diagnosis. These children deserve services plans that take into account their specific community challenges, particularly the notion that punishment will remove perceived negative behaviors. iustitia encourages school systems to focus on the special needs of children of color and ensure that testing and diagnosis tools are available that take into account different behavioral and community concerns. Schools need to take on a larger role in this process to ensure that autistic children receive the unique attention they need and that the costs associated are not simply the parents’ responsibility. Finally, our schools are an ideal place to begin systematically challenging the current societal structure that unduly marginalizes autistic students and other persons with neurodiversity. Creating more inclusive environments that encourage individuals to achieve their full potential and share their unique talents with their community will only strengthen society at large. We as a community need to embrace neurodiversity and help children succeed in their academic lives.