From having to teach children what to do if stopped by the police to relatives who are reluctant to discuss mental health, the problems already prevalent within the Black community are exasperated for families dealing with an autism diagnosis. After her son Ari was diagnosed with autism spectrum disorder in 2008, Camille Proctor formed The Color of Autism the following year to specifically address the needs of Black families.
An African American family affected by autism faces a unique set of challenges, namely isolation. With family and friends, Proctor says, “You don’t get the support sometimes because they don’t quite understand or they’re in denial. And then when you’re seeking support groups on the outside, most of the people don’t look like you, so then they don’t understand some of the situations that your child may be in that their child will never have to experience.”
Like most Black mothers, she was afraid for Ari as he’d grow older and likely encounter the police at some point. Would the officer see that he has a developmental disorder? Would Ari understand their commands? The Color of Autism works to educate and advocate for African American families affected by autism, and they’ve created a network where parents and caregivers of color can lean on each other.
They host support groups on the second Saturday of each month at Detroit Parent Network and offer regular parent trainings, six-week programs during which parents learn to be “advocates within their communities” and act as peer support for one another.
The Color of Autism is a part of the Autism Safety Coalition, a collection of varied organizations that worked with lawmakers like Sen. Tulsi Gabbard to pass Kevin and Avonte’s Law, named for 9-year-old Kevin Curtis Wills who wandered from his home and slipped into Iowa’s Raccoon River and drowned in 2008, and 14-year-old Avonte Oquendo who wandered away from school and drowned in New York City’s East River in 2014.
Kevin and Avonte’s Law, passed in 2018, facilitates training and emergency protocols for schools, provides first responders with additional information and resources, and makes locating technology more readily available. A common characteristic of children with autism is the tendency to wander, and they’re often attracted to water; accidental drowning is the leading cause of death in children with autism according to the National Autism Association.
The Color of Autism encourages parents of children with autism to teach their young ones to swim, which often requires a tailored, more expensive setting. Proctor says, in some cases, they’re able to underwrite the costs of swimming lessons for families in need. “It’s a very important skill,” she says. “If your child has wandering tendencies, they tend to run to water or the freeway. But most of our kids, most African American kids, end up drowning.”
Proctor says from 2 years old, Ari was an “escape artist.” He could disengage any lock or security code and slip out, but Ari had an early protector in their late dog Boo. “Boo, in her mind, Ari was her puppy,” she says. “That dog would go behind him and knock him down, and sit on him until we could find him.” She says she had other reasons to be concerned about Ari early on; he’d walk on his tiptoes for hours and turn light switches on and off for no apparent reason.
“I had to push for a diagnosis, but that was only because I went to every doctor I could, and finally, a genetic doctor said he had 47 chromosomes instead of 46 and most kids that she sees (with an extra chromosome), in her opinion, had autism.”
That doctor connected Proctor with a developmental pediatrician, and she was able to get an appropriate diagnosis and start to help Ari, but it was still a struggle finding people who could truly relate. “All I wanted was for somebody to tell me that it was going to be better.”
Black children with autism are often misdiagnosed or diagnosed late – or not at all. Proctor says, “Our children get diagnosed with autism, on average, two and a half years later than their white counterparts,” a delay that she credits to denial and misinformation.
She says she wants to see other autism advocacy groups be more deliberate about getting out and connecting with the Black community. “We have to dispel the misinformation out there. We have to teach parents how to be their child’s best advocate.”
For more information on The Color Spectrum, to get involved or to donate, visit thecolorofautism.org.