Autism Awareness in the Black Community

Autism has become an increasingly diagnosed condition among children in the U.S., and, in particular, among Black communities. This rise in diagnoses has sparked discussions and curiosity about the nature of autism itself. So, what is Autism?

Officially called autism spectrum disorder, Autism is a neurological and developmental disorder that affects how people interact with others, communicate, learn, and behave. More specifically, Autism encompasses a broad range of conditions characterized by challenges with social skills, repetitive behaviors, speech, and nonverbal communication, according to Autism Speaks, the largest autism research organization in the U.S.

The manifestation of autism can vary significantly from person to person. Symptoms can be observed as early as six months and may include a lack of smiles and limited-to-no eye contact. In infants and toddlers up to 24 months, symptoms include little to no babbling, minimal response to names, and a lack of gestures such as waving, pointing, or reaching. Signs of Autism at any age include no eye contact, delayed speech and language development, persistent preference for solitude, continuous repetition of words and phrases, and unusual and intense reactions to sensory stimuli such as sounds, smells, tastes, textures, lights, and colors.

The timeline for diagnosing Autism can differ widely. Some children are diagnosed at just 12 months, while others may not receive a diagnosis until they are older than 24 months. Alarmingly, research has shown that Black children are often diagnosed later than their white counterparts, which can lead to additional challenges, such as feelings of isolation and loneliness in care.

According to the CDC, 1 in 36 children in the U.S. has been diagnosed with Autism. New estimates indicate that approximately three percent of Black, Latino, and AAPI children in the U.S. have been diagnosed with Autism, compared to about two percent of white children. Autism can present challenges for any child and their caregivers; however, Black children face unique difficulties at the intersection of race and disability, compounded by societal discrimination.

The Black and autistic communities are both marginalized, and Black children with Autism often find themselves without adequate access to education, care, and community resources. Mental and behavioral health issues have historically been stigmatized in the Black community, and even today, discussions about these topics can be fraught with discomfort.

In many households, children are raised in environments focused on survival, leading to restrictions on emotional and psychological expression. This can be particularly dangerous for children with Autism, who may struggle to articulate their feelings. Additionally, Black autistic children often encounter pervasive stereotypes about Black youth in society, which can further complicate their experiences.

Stereotypes that label Black children as loud, aggressive, intimidating, deviant, or imbalanced can be damaging, especially when these children are under the care of those from outside their communities. For an autistic child, who may already face challenges with comprehension, learning, speech, and cognitive function, a lack of understanding and compassion from others can have detrimental effects on their development.

Some of the earliest examples of advocacy for autism awareness in the Black community came from public figures like actress Holly Robinson Peete and singer Toni Braxton in the 2000s. Both women are parents to autistic children and have used their platforms to educate the public on their experiences. Braxton has worked with Autism Speaks, while the HollyRod Foundation, founded by Peete and her husband, former NFL player Rodney Peete, focuses on educating the public about supporting autistic children and raising overall awareness of the disorder.

The Color of Autism Foundation is an organization with extensive resources for autistic children and their parents in Metro Detroit. This foundation uniquely aims to serve children of color who may face cultural challenges specific to their communities. They offer services such as free virtual support groups for parents and five-week training classes held on Saturdays. Parents typically reach out via phone or email with inquiries, and the foundation also assists families in accessing needed services.

Despite the efforts of organizations like the Color of Autism Foundation, certain stigmas about Autism persist within the Black community. The foundation seeks to address and eliminate these misconceptions. Founded by Camille Proctor, who is the executive director, the foundation aims to provide culturally competent support to African American families. Proctor’s advocacy for diversity within disability communities has earned her recognition, including an appointment to the Michigan State Disability Council by Governor Gretchen Whitmer in September 2020.

In March 2009, Proctor established the Color of Autism Foundation as a resource for African American parents who face unique challenges. At that time, she found that no culturally competent support groups existed to assist her in her own journey.

In an interview with Channel 4 during the racial reckoning in August 2020, Proctor and another parent shared their concerns regarding police authority. Most Black parents have difficult conversations with their children about the dangers of systemic racism in schools, workplaces, and law enforcement. For parents of autistic children, these discussions become even more complex. A significant concern is safety, particularly concerning police encounters. Parents worry whether law enforcement will recognize a disability during an interaction. Difficulty following directions or effectively communicating can lead to dangerous situations if officers are not adequately trained to interact with individuals with disabilities.

Historically, autism foundations have not catered to the needs of people of color. Proctor’s vision of creating a culturally aware autism foundation faced skepticism and hurdles, particularly regarding funding. “Pitfalls would definitely be funding and systemic racism as society attempts to paint the world with a one size fits all brush,” Proctor says.

“Black children often go undiagnosed or misdiagnosed and when they do get a diagnosis it’s on average two years after their white counterparts. Many black boys are diagnosed with ODD (oppositional defiant disorder), which fast tracks them into the criminal justice system. This also leads to inadequate educational and mental health support,” Proctor explains.

Over time, the Color of Autism Foundation has provided families with resources to navigate life’s challenges while ensuring a culturally relevant experience. Among their unique offerings, they have established a support group specifically for Black fathers.

The COA Black Father Support Group provides a safe space for fathers to connect and share experiences, allowing them to bond and empower each other. Meetings are held online twice a month on the first and third Thursdays. Interested individuals can find signup links for this group and others on their website at thecolorofautism.org.

Looking ahead, much work remains regarding Autism in the Black community. There is a glaring lack of diversity in autism research, and many parents are still waiting for appropriate diagnoses for their children. Issues such as lack of awareness, insufficient community resources, pervasive stigmas, and disparities in medical care continue to pose significant challenges.