Supporting Black Autistic Children and Youth
January 31, 2024
By: KD Harris, M.A.
As a 2006 study pointed out, every single ethnic group includes people with disabilities, making them the world’s largest multicultural minority. In the United States, people with disabilities represent 27% of the population. During the 2021-2022 academic year, 7.3 million learners between the ages of 3 and 21 received special education services under provisions of the Individuals with Disabilities Education Act. Special education students represent 15% of all public school students, and approximately 1.5 million American students between the ages of 3 and 17 were diagnosed with autism.
It bears noting that racial inequities shape the landscape for autistic children with historically minoritized ethnic identities, likely due to factors such as prejudice, structural racism, and equity gaps in education. For example, Black autistics and/or their caregivers reflect that they face difficulties with attaining an autism diagnosis and gaining access to appropriate interventional services and supports. As a result, Black autistics also experience poorer life-long health outcomes. Further, neurodivergent people in general experience disproportionate levels of violence and victimization that negatively impact both mental and physical health and general wellbeing.
Pediatricians, pediatric nurses, and early childhood educators should be appropriately trained to guide parents and other caregivers in developing a full understanding of the clinical signs of autism in early childhood.
It is not uncommon for clinicians to dismiss parental concerns when Black children are concerned. One 2007 study discovered that Black children were 5.1 times more likely to be misdiagnosed with a conduct disorder first before the autism diagnosis was made. Practitioners whose cultural backgrounds differ from those they serve should take advantage of anti-bias clinical training and use practices guided by culturally responsive approaches as a means of confronting and mitigating any prejudices or biases about students and/or families that may influence diagnostic, treatment, or interventional strategies.
According to a Boston Medical Center study, autistic individuals are seven times more likely to encounter law enforcement than neurotypical individuals. For Black autistics, this victimization includes greater incidences of run-ins with law enforcement and exposure to police brutality. Police officers must be appropriately trained in the use of anti-bias and de-escalation practices, that are research-based and peer-reviewed, for engaging with Black autistic youth and adults.
Early diagnostic and intervening services must be prioritized. Some Black families may lack access to diagnostic, healthcare, and treatment options. Pediatricians, early childhood educators, and K-12 educators must do a better job of ensuring that Black families with autistic children are connected to local nonprofits and public service agencies (like the State of California’s regional centers) that are in a position to address gaps in services. Many advocacy organizations and agencies can be located on the Internet using the term “learning disability advocacy organizations near me.”
Beginning in early childhood, Black autistic children must be presented with opportunities to become effective self-advocates by communicating and making decisions about their personal needs and interests. When our children were young and we were planning an outing for them, my husband and I would present them with two or three choices to help them feel that they had power in the decision-making process. We also empowered our children to discuss their feelings, needs, and interests, as an important part of the decision-making process.
It is particularly important that Black autistic children, guided by a trusted ally, be trusted to develop strategies to engage in activities across different settings that promote healthy identity formation and the development of a sense of agency. My husband and I always created opportunities to humanize our children in discussions with their teachers by discussing how our children’s cultural traditions and personal strengths, and our families’ funds of knowledge, could be integrated into or strengthen learning experiences throughout the school day.
The ability to develop productive social interactions must be built from the ground up. An understanding of one’s identity is important. Beginning in early childhood, parents and educators should use assets-based approaches to help children develop an understanding of who they are. Help your children discover who they are by observing their preferences when it comes to toys, people, activities, and places and asking developmentally appropriate questions such as:
Ultimately, identity is shaped by sociality, or how one understands oneself in relationship to others. Some Black autistic children and youth may require guidance regarding how to navigate power dynamics (to include power imbalances) that often play out in social relationships. Educators and parents should create developmentally appropriate opportunities for Black autistic children to discuss when they feel they are exposed to injustice, unfairness, bias, and prejudice. For instance, an autistic child may experience frustration when they believe they are being treated unfairly. Unfortunately, the way that a Black autistic child or youth expresses frustration may be misinterpreted by a parent or an educator as an “inappropriate” expression of anger, frustration, or opposition. It is important to take a moment and allow the child to explore their feelings.
Parents and educators must also help the child to develop appropriate coping strategies that are designed to preempt or manage moments of emotional dysregulation. For example, when you sense that a child is about to “melt down,” it is important to identify and try to eliminate the conditions that may be causing the child to feel overwhelmed or overstimulated (identify the triggers). Perhaps the child might also benefit from taking a walk, using calming techniques that help them to feel safe, engaging with a sensory toy, and other uses of positive reinforcement.
While identity formation is a very complex process that occurs across the lifespan, adolescence is a critically important developmental period for constructing a sense of who you are. Since stressors and trauma can shape the formation of identity, it is important that caregivers, educators, and therapeutic professionals understand the impact of collective trauma on children who are Black and disabled. Further, it is important that trauma-informed opportunities exist for Black autistic children and youth to develop an understanding about who they are, what their values and belief systems are, and what their place is in the world. Parents and educators should deploy trauma-informed and culturally responsive strategies to explore Black autistic children’s anxieties and fears as they try to navigate institutional and structural barriers, particularly in educational spaces.
Guided by the social model of disability, parents and educators should present Black autistic youth with culturally responsive strategies that provide opportunities to explore their identities and feelings using tools like drawing, painting, self-narration, creating music, and other means of self-expression. Parents and educators should create specific opportunities for students to explore and discuss their identity markers using assets-based approaches that are tied to deepening their understanding of their family history. Educators must make their lessons, textbooks, community resources, and guest speakers relevant to the lived experiences of their Black autistic students. Educators should also recognize that parent involvement has a positive impact on academic achievement; therefore, inclusive opportunities should be created to engage parents in what happens in the classroom.
Black autistic children and youth would greatly benefit from having emotional and mental health support included as important elements of their educational and transition planning. In most cases, educational and transition planning are limited to services, supports, and accommodations that improve academic and functional skills development. Too often, social-emotional and mental wellness are overlooked, even though, as noted on the Psychology Today website, there is extensive evidence of greater rates of depression and anxiety co-occurring with autism, dyspraxia, and ADHD. Parents must insist that their children receive an appropriate mental health evaluation and treatment as part of the individualized education program (IEP) process. Further transition planning should include examining whether the student might require more targeted emotional and mental health supports both as a requirement of students’ right to a free appropriate public education (FAPE) and to support the student’s transition into work or education after they complete high school.
Finally, in an effort to support the self-determination journey (ideally starting no later than middle school), parents, Black autistic students, and educators should be trained in how to implement culturally responsive student-directed educational and transition planning.
In relation to their White peers, Black autistic people often experience disproportionate educational and other opportunity gaps across the lifespan. By examining their lived experiences through an intersectional lens across their many socially constructed identity markers, the institutional and systemic barriers they face come into focus. Parents and caregivers, educators, and medical, clinical, and therapeutic practitioners must deploy specific strategies that take into consideration the unique challenges faced by Black autistic children and youth as they navigate spaces that were not designed with them in mind. These strategies should comprise part of a larger complement of interventions that are designed to address the educational, social-emotional, and mental health needs of Black autistic children and youth.
KD Harris, M.A. is the proud Black mama of two remarkable gifted/neurodivergent young adults and has been married for 39 years to her extraordinary neurodivergent husband. She is a co-founder and serves as the executive director of the social impact non-profit Let’s Talk LD. She is also a critical scholar and qualitative researcher who will complete her doctoral studies in educational leadership at the California Polytechnic State University (Pomona) in May of 2024. She has served as an equity-minded practitioner-scholar-activist for almost 40 years, working to close equity and opportunity gaps in education, employment, and civic engagement on behalf of historically oppressed and marginalized people.