Autism in the Black Community
Early diagnosis and awareness can help turn the tide against this disorder
Imagine a daughter who does not speak one word you can understand until she is five years old, or a son who bangs his head against the wall repeatedly, while another flaps his hands, rocks his body and screams random phrases constantly. This is the reality for many parents who have children with Autism Spectrum Disorder (ASD), a group of developmental disorders that can cause significant social, communication, and behavioral challenges.
Being a mother or a father is one of the most precious gifts that we experience as humans, and watching your child develop and come into their own is an awe-inspiring privilege, one that many parents may take for granted. Here’s how it goes: You have a baby, and within the first couple of years, you watch your baby take its first steps, utter its first words, and become emotionally attached to you, saying simple phrases such as “I love you.” While these milestones may seem like normal, fundamental actions to many, developmental delay steals some of these precious moments from parents who have children with autism.
Celebrities such as Tisha Campbell-Martin, Toni Braxton and Holly Robinson Peete are dedicated to raising awareness and offering hope to those affected by ASD through hosting events, participating in documentaries such as Colored My Mind, serving as national spokespersons for organizations such as Autism Speaks, and starting foundations like the HollyRod Foundation.
These entertainers all have children who suffer from the disorder, and because of first-hand experience, they understand how critical early detection and awareness can be.
Some of us may be familiar with the term “autism,” but do we really know what autism is, what it looks like, or how much this disorder is damaging the black community?
While autism has no respect as to color or class and affects all populations equally, black children are more likely to be misdiagnosed or diagnosed late. Black children receive their diagnosis almost two years after white children, which, unfortunately, is a huge problem for the black community.
Camille Proctor, 48, knows the face of autism all too well. In 2008, she found out that her two-year-old son, Ari Joseph, was suffering from ASD, but it wasn’t the doctors who picked up on it—it was Camille. “I really tracked his milestones as he progressed from an infant to a toddler, and I noticed that there wasn’t a change when he went into what we call toddler-hood,” says Proctor. “He wasn’t pointing, and he walked really late. But, the issue with my child, like many others, was that he looked what they call ‘typical,’ so I was told that he was delayed but would catch up.”
Paying close attention to your child’s behavior, social skills and overall development is key in early detection of developmental delay. Sometimes doctors do not detect it, especially if your child appears “normal.”
Marshalyn Yeargin-Allsopp, M.D., medical epidemiologist and chief of the Developmental Disabilities Branch at the Centers for Disease Control and Prevention, says, “The CDC has a campaign called "Learn the Signs. Act Early," which really came about because we felt that child-care workers, parents and health-care providers should not just look at a child and say, ‘We’ll wait to see what happens,’ because then we have a tremendous delay in diagnosis.
“Ms. Proctor’s experience is typical…. Doctors just want to believe that nothing is wrong, and they tell the parents, ‘Let’s just wait, let’s see if they talk at three.’ But then you’ve missed the window of opportunity for early intervention, because that’s from birth to three.”
Proctor, who in 2009 founded The Color of Autism Foundation in Atlanta, says she knew in her gut that something was wrong. “I took him to different doctors and enrolled him in an early intervention program, which was useless for me. I pushed on and took him to a genetic doctor. She looked at him, observed his actions, and knew right away.”
“There are a lot of studies that show that there is brain plasticity from birth to age three, and it’s a lot of critical learning that takes place during that time,” says Dr. Yeargin-Allsopp, whose area of expertise is autism. “Reading to children, talking to them, language stimulation—all of that is setting certain pathways in the brain that make a difference in terms of overall brain development.
“If you are in early intervention from birth to three, but ASD is recognized at five or six,” notes Dr. Yeargin-Allsopp, “you have missed an important time in terms of development,” which is what often happens with African-American children.
With early and intensive treatment, most children are able to improve their ability to interact with others, communicate, and live independent lives. Too often, many black children are misdiagnosed and labeled ADD or ADHD, placed on medications, and because of the wrong diagnosis and treatment, oftentimes end up in the criminal justice system.
“There are people who live pretty normal lives with autism, but it’s more prevalent with Caucasians because they get treated early,” says Proctor, whose son is now five years old and just started talking. “You have Bill Gates, actor Dan Aykroyd, and a host of others who are on the autism spectrum and lead normal lives. But for some reason, for us, it’s detrimental. If we [blacks] don’t get the help, we always end up prisoner 349218947.”
A diagnosis of autism is stressful for many families, especially those who are economically strapped. “When you have a child on the spectrum, it’s a lot of work,” says Terrance Sheffey, community outreach coordinator for Family Behavioral Resources in Pittsburgh. “I’ve seen families go through divorce because they had kids with autism, and it weighs heavily on marriages and relationships, especially financially.”
“In our community we need to come together and fight, and not just with autism but for any type of learning disability with our children,” says Proctor.
“Every day I push for parents to understand and know what autism is so they can advocate for their child. I need for parents to own this. Get your child tested, diagnosed, and treated immediately. It’s a great injustice for our children to slip through the cracks because we don’t know any better. The worst thing in the world is to know you could’ve done something and you didn’t.”
Learn more about Colored My Mind, an autism documentary featuring Tisha Campbell-Martin, D.L. Hughley’s wife, LaDonna Hughley, and three other remarkable moms sharing their stories about dealing autism in the black community.