By Harnoor Mann and Madelynn Park
During the first few days of the 2020 fall semester for the Cincinnati Public School District (CPS) in Ohio, over 4,000 students experienced difficulties with the transition to remote learning, whether the issue be connectivity or virtual support.¹ Amid school board meetings eyeing a rising COVID-19 case count and protracted arguments conducting a cost-benefit analysis of returning to hybrid learning, a growing population has had little data to tell its story: autistic students of color.
For much of the twentieth century, autism was considered a “white person’s disease.” The CDC’s Autism and Developmental Disabilities Monitoring (ADMM) Network found in a 2014 prevalence report that while the rates of diagnosis between white and Black children were similar, Black children lagged by approximately 22% in receiving an early diagnosis or proper interventions.² Under the Individuals with Disabilities Education Act (IDEA), the federal government is equipped to cover up to 40% of educational costs, including therapies and special interventions, for students with disabilities.³ With the gradual abdication of this responsibility to pressured state governments, underfunded public schools have little capital in upholding disability right protections. In school districts which have experienced accumulated social neglect and disinvestment, such as neighborhood schools, the impact is particularly salient.
Chase Middle School is a public neighborhood school in Cincinnati hosting students who come from diverse backgrounds, particularly communities of color. During his time rotating at Chase, Adam Denney, a student teacher for the multiple disability classroom, recalls the challenges of working with students of vastly differing disabilities and learning levels.
“When you have a multiple disability classroom, you end up with some students who are struggling with phonetic sounds and other students who are learning at a seventh-grade level,” said Denney.
The Sisyphean nature of transitioning to online learning for these students with special sensory and attentive needs also rests in the daily lives of their caregivers. Many of the parents work essential jobs, unable to monitor their child’s crammed online schedule. Denney claims there were many students who left CPS with no contact during late spring — the reason why remains to be uncovered.
The underdiagnosis of autism in communities of color is partly attributed to the fact that the diagnosis is based not on a medical test, but on a set of behaviors. Within the classroom, Denney has observed teachers who set out to disrupt embedded prejudices, diligently addressing challenges that arise for students with disabilities. For students of color, this individualized attention proved necessary in transforming harm into better behaviors.
“That’s what I think these students in particular are really missing virtually — it’s the interventional support that allows you to teach them proper social behaviors in a constructive manner,” said Denney.
In ensuring equitable access to therapies and education related services, the parents of autistic students are forced to be deeply involved in the day to day schooling of their children. Lost wages and the cost of special services incurred by one or both caregivers of an autistic child can accrue to as much as $60,000 a year.4 Parents are now responsible for upholding a variety of roles at the home, which obviously is not feasible for many families, especially for those who are essential workers or single parents.
Disparities in health care equality, encompassing self perception of social mobility, and negotiations in clinics disproportionately affect Black and Latino parents. Across the scale, these communities are less likely to feel partnered in their child’s care, have more unmet therapy needs, and lack full access to evidence-based care. Advocacy is not a choice for caregivers of students on the spectrum; it is a necessary assertion of power.
Vedant Singh, the 14 year old son of Tulika Prasad, was diagnosed with autism at the age of three. His condition manifests as significantly delayed speech, therefore occupational and speech therapy is a priority in Vedant’s schooling. When he first moved from a private special needs program to a large public school, Tulika recalls having to fight tooth and nail with school administration, even calling in an outside mediator, for Vedant to be offered a promised consistent therapy regime.
Caregivers, widely overlooked as a force for equity and demanding disability reform, can be on the receiving end of microaggressions from school districts — diverse or not.
“I think Vedant’s school might have expected South Asian women to be more docile. When they realized I wasn’t going to relent advocating for my son’s rights, we began to form a necessary partnership towards his care,” said Tulika.
Change and a disruption in external supports is traumatic for many autistic children, including Vedant. Tulika describes the months of online schooling during the spring as being horrid. At his school, Vedant was assimilating to an environment that included a motor room with new, playful sensory input. Interventional support provided by the school proved necessary in granting Vedant a measure of improvement in his speech. Since the start of lockdown, he has been able to access these therapies only a handful of times — or as Tulika affirmed, “as good as nothing.” During the spring, thirty minutes of “circle time” with the teacher and other students with disabilities substituted the community he would usually experience. The online, at-home experience simply does not account for the more hands-on support Vedant needs. Understandably, full time online schooling in a home that is not equipped with these resources has left Tulika very anxious.
The unfortunate inconveniences parents and students with autism are facing amid this pandemic will not be immediately resolved once schools open their doors to their students. Students of color with autism will still face great hardships in order to get necessary care, as well as barriers to receive proper support and an education they rightfully deserve. This must not remain the case.
The autism community and general public has made tremendous progress in supporting and accepting those affected by ASD, however, the same effort should be applied to embrace the full range of skin colors that individuals with autism may have. The stigma around autism as a “white” disorder should be put to rest. It is not a white disorder, it is a people disorder, and more support should be given to these communities for equality to truly be achieved.
² Autism and Developmental Disabilities Monitoring (ADDM) Network. (2020, March 26). Retrieved from https://www.cdc.gov/ncbddd/autism/addm.html
³ About IDEA. (n.d.). Retrieved from https://sites.ed.gov/idea/about-idea/
4 Autism Statistics and Facts. (2020). Retrieved from https://www.autismspeaks.org/autism-statistics