By Sean Copeland, Contributing Writer
Autism has become an increasingly diagnosed condition among children in the U.S., and, in particular, among Black and minority children.
Despite the prevalence of diagnoses, there remain a lot of questions about it. 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 also refers to 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.
Autism is a condition that varies for everyone and may affect people differently, but anyone can be diagnosed with the disorder regardless of race, ethnicity, age, or gender, and symptoms can occur as early as six months and 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, little or no response to names, and no waving, pointing, or reaching. Signs of Autism at any age include no eye contact, delayed speech and language contact, persistent preference for being alone, continuous repetition of words and phrases, and unusual and intense reactions to sounds, smells, tastes, textures, lights, and/or colors.
As for when Autism is diagnosed, it can vary. Some children are diagnosed with the disorder at 12 months, while others aren’t diagnosed until after 24 months or older. Previously, it’s been reported that the disorder is diagnosed later in Black children than in white children, leaving issues to develop, such as isolation and loneliness in care.
According to the CDC, 1 in 36 children has been diagnosed with Autism in the U.S. New estimates show that, apparently, three percent of U.S Black, Latino, and AAPI children have been diagnosed with Autism compared to about two percent of white children. Autism can be challenging for any child and their caregivers, but Black children, in particular, face a unique challenge as being at the intersectionality of discrimination.
As the Black and autistic communities can already both be marginalized, Black children with Autism find themselves often not receiving proper education, care, and community resources. Mental and behavioral health has historically been stigmatized in the Black community, and even today, it isn’t exactly everyone’s favorite subject to talk about.
When it comes to family and household, a lot of children are raised by means of survival, and some children aren’t allowed to express their emotional or psychological distress. For children with Autism, this can be dangerous as they aren’t always able to properly express what they are feeling inside. Aside from the challenges that they may face inside their own community, Black autistic children often must deal with the already-present stereotypes of Black children in society.
Loud, aggressive, intimidating, deviant, and imbalanced are often stereotypes that unfairly plague Black children, especially when they are being instructed by people from outside communities. For an autistic child, who often has issues with comprehension, learning, speech, and cognitive thinking, failure and ignorance to be compassionate and aware of their needs can be damaging and even detrimental to their growth.
Some of the earliest examples of autism awareness in the Black community were from actress Holly Robinson Peete and singer Toni Braxton in the 2000s. Both women were parents to autistic children and often used their platforms to educate the public on their journeys and what their experiences were like, with Braxton working with Autism Speaks.
The HollyRod Foundation, started by Peete and her husband, former NFL player Rodney Peete, exists to educate and inform the public on how to support autistic children while also creating overall awareness of the disorder.
Locally, The Color of Autism Foundation is an organization that has a wealth of resources available to autistic children and parents in Metro Detroit. Autism Alliance of Michigan, Autism Society of Greater Detroit, and Ted Lindsay Foundation are a few of the organizations in the area.
Uniquely, The Color of Autism Foundation seeks to serve children of color who may face unique and cultural challenges. Services that are offered include free virtual support groups for parents and five-week parent training classes held on Saturdays. Parents typically call or email the administration with inquiries and the foundation also assists parents with accessing services.
Unfortunately, certain stigmas continue to persist about Autism in the Black community, and the Color of Autism Foundation seeks to hopefully eliminate them one day. The foundation was founded by Camille Proctor, who serves as its executive director. Her efforts in diversity advocacy for disability communities have earned her many accolades, including being appointed to the Michigan State Disability Council by Governor Gretchen Whitmer in September 2020.
In March 2009, Proctor founded The Color of Autism as a source for African American parents and the unique challenges they face, as she found there were no culturally competent groups available to support her in her own journey.
In an August 2020 Channel 4 interview, during the height of the racial reckoning that protested against police brutality, Proctor and another client shared their concerns as parents, particularly when it came to the subject of police authority.
While most – if not all – Black parents have tough conversations with their children about the dangers of systemic racism in schools, workplaces, and law enforcement, there is an added layer of challenges when dealing with autistic children. One of the main concerns is safety, specifically as it relates to police brutality. There is a natural worry about whether police will be able to recognize an apparent disability in their sons at the time of an encounter. Not being able to properly follow directions or use effective means of verbal communication during an encounter could prove to be very dangerous if not properly briefed on how to interact with police.
Historically, autism foundations haven’t catered to people of color. While Proctor had a vision to open a culturally aware autism foundation, others didn’t believe in her goal as easily. One of the difficulties she faced in opening the organization was 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 helped families with autistic children handle life’s challenges while providing a culturally relevant experience. Among the unique services that are provided, they offer a support group, especially for Black fathers.
The COA Black Father Support Group provides a safe space for fathers to connect and share experiences, allowing each other to bond and empower each other. For those who are interested, meetings are held twice a month online on the first and third Thursday of each month. Signup links for this group and all the groups are available on their website at thecolorofautism.org.
As for the future of Autism in the Black community, there’s much work to be done. There’s a lack of diversity in autism research, with many parents still waiting for the proper diagnosis for their children. Lack of awareness, community resources, stigmas, and disparities in medical care are some of the challenges that continue to persist.
However, behavioral management therapy, speech therapy, proper medication, and nutritional therapy are just some of the resources that are available to children with Autism. One of the most important components to identifying the disorder is early detection. With the proper resources listed above, Black children with Autism can grow up to lead happy, healthy, and fulfilling lives; for a list of resources in the Detroit area for Black autistic children, visit thecolorofautism.org.
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