By Tonya Jameson
LaFreda Hendley knew something was wrong with her son, Carter, when he was 1 year-old. By age 1½, Carter knew the letters of the alphabet, but he also had a strange gaze. Sounds set him off, and didn’t like to be touched.
Hendley, 37, shared her concerns with fellow church members, who told her she lacked faith. Her first pediatrician blew her off, and so did an ear specialist. Hendley persisted, and finally found a pediatrician who would take her seriously. Carter is 5 now, and he still isn’t fully diagnosed with autism, but he is “on the spectrum” (of autism, meaning he has at least some of the symptoms of the condition) and is receiving treatment.
Tameka Vazquez, 34, and her husband had concerns about their son, Chancellor. He liked to chew on tags from blankets and shirts. He stared blankly, with no emotions, and was slow to do everything.
“Him not speaking was really a red flag,” said Vazquez, sitting in the offices of Smart Start of Mecklenburg County, which funds health, family support, early care and educations programs.
Parents know when something is up with their kids, but when it comes to diagnosing autism, Black parents’ concerns are often dismissed or downplayed. It’s one of the reasons Black children are often diagnosed with autism up to two years later than white children, according to the Centers for Disease Control.
Autism is part of the national lexicon, but it is still seen primarily as a white condition. Two new popular television programs, ABC’s “The Good Doctor” and Netflix’s “Atypical,” reinforce that perception. Both shows feature autistic main characters — white males. However, prominent Black celebrities and non-famous Black parents are bringing autism in the Black community out of the shadows.
Actress Holly Peete Robinson, singer Toni Braxton and Boyz II Men’s Shawn Stockman have been public about their autistic children. In summer 2017, the Autism Women’s Network and Lydia X. Z. Brown published “All the Weight of Our Dreams: On Living Racialized Autism.” The anthology features poetry, essays, short fiction, photography, paintings, and drawings in the first-ever anthology entirely by autistic people of color. It features 61 writers and artists from seven countries.
It’s critical for Black families to see other Blacks dealing with the disability. Blacks generally face more delays in diagnosis and treatment than their white counterparts.
Some of the challenges are within the Black community, under the same shroud of secrecy that prevents many Blacks from publicly acknowledging any developmental disabilities. Then there’s the overt and covert racism that Black parents face when seeking services for their children.
The CDC estimates one in 88 children have autism.
A CDC study also found that physicians were more likely to diagnosis autistic Black children with other disorders, often ADHD. This results in delayed treatment, support and advocacy for the children.
Most autism research and therapy has been geared toward affluent white families. Earlier studies wouldn’t even accept children of single parents.
“If you aren’t in, and you don’t know where to go doing a Google search isn’t helpful,” Hendley said.
“People, all they can see is color. Everything isn’t about color,” Vazquez said. “We’re a family. People need to get past that. They can come together for Black Lives Matter. Come together for this. Other kids need to know there are differences with other kids.”
Getting an autism diagnosis and treatment is difficult for everyone. Parents must make multiple appointments with a variety of specialists, with average waiting lists that are months long. Studies show that an average of two years passes, regardless of race, between the time parents first recognize issues with their children and when those children receive autism diagnoses. That explains why Hendley is still waiting for two additional diagnosis for Carter.
Once a diagnosis is made, the appointment schedule and waiting times can be even more daunting. Many of the therapies are done at home, which makes working nearly impossible.
Tameka Vazquez knows this all too well.
“Everything is just a process,” she said. “It’s been a long road within a whole year. It’s been stressful.”
Vazquez stays at home, and her husband, Thomas, 36, works. She has noticed discrimination when she goes to doctors’ appointments. Staff members share more information with her husband, who is Hispanic, than they do with her (she is Black). One speech therapist even asked if Thomas was Chancellor’s father. They never went back to that therapist.
Then there’s the challenge of using Medicaid. Some specialists and doctors don’t accept it.
“There’s a stigma,” Vazquez said.
Like Carter, her son, Chancellor, age 2, has multiple appointments and receives therapies at home. She and her husband leave Chancellor with just anyone, including family members.
“I’m his whole world,” Vazquez said.
The Vazquezes noticed something was amiss with Chancellor around his first birthday. They were in denial for a while. In fact, they didn’t even talk to each other about their concerns until sometime last year. Finally, Vazquez broke down. She told his pediatrician about the repetitive play he engaged in, that he wouldn’t play with his siblings and that he threw tantrums and banged his head intentionally.
“Ninety percent of his day he spends crying,” his mother said.
Chancellor was diagnosed in July 2017. His parents are still digesting the diagnosis. It’s been taxing on their relationship. They also have three other young children. Trying to explain Chancellor’s behavior to them isn’t easy.
“We’re still just not ready,” Vazquez said.
Chancellor doesn’t show emotions or smile. He sees a speech therapist, his third, but still hasn’t said a word. He will take someone to the refrigerator when he’s thirsty or stare at the table when he’s hungry. That’s a big deal because before he would just cry.
“We just want him to talk, and we’ve been told that he may never talk,” Vazquez said. “We just want him to speak.”
Vonetta Blakely, autism coordinator, guiding parents to services at Smart Start, said a diagnosis of autism requires patience. It’s not a sprint.
Along with the difficulty of working with the medical establishment and family, there’s the challenge of raising an autistic child in the Black community.
Most autistic children self-stimulate, with behavior such as flapping their arms, banging their heads on something, tapping their feet, etc. Black people call that bad behavior. Public places such as grocery stores are too over-stimulating, which is why autistic children often wear noise-cancelling headphones. Black people call that disrespectful. Remember, most autistic children can’t be left alone with just any caregiver, so leaving the children with a babysitter typically isn’t an option.
Carter’s parents have only been on a couple of dates in the last two years.
Since autistic children often can’t be left with just anybody, running errands is stressful. It takes Vazquez two hours to get Chancellor out of the house. He doesn’t like change. A trip to the store can lead to an embarrassing meltdown.
“I feel like crying every time we go out,” Vazquez said.
Vazquez and Hendley shared their stories to help other families that may be dealing with autism and to hopefully make the Black community more compassionate.
Both women say that two pillars of the Black community — the barbershop and the church — have been nightmares for them.
Vazquez still regrets taking Chancellor to the barber. She picked a shop that looked relatively empty on a slow day. She told the barber that Chancellor was autistic, but it ended badly. She and her husband had to hold Chancellor down.
“That’s something that I wish I hadn’t done,” she recalled quietly.
Church had similar results for both parents. Hendley tried a couple of times with Carter, bringing noise-cancelling earphones to mute the sound and snacks because he eats on a schedule. Still, the disapproving stares and church members who still believed that there was nothing wrong with Carter proved to be too much.
“I stopped going to church,” Hendley said. “That’s where we go for everything. It’s very damaging.”
Both women hope pastors will one day talk about autism from the pulpit. That will make congregations more compassionate toward their fellow members. Then maybe, just maybe, as with so many other critical movements, what happens in the church will trickle down to our communities.
Resources:
http://www.thecolorofautism.org/ – Provides links to resources for families affected by autism. Highlights the gaps in services and the needs.
http://www.autisminblack.com/ – Provides links to resources for families affected by autism.
http://micahsvoice.com – Shawn Stockman’s nonprofit to help families with children on the autism spectrum. Features a personal blog from Sharlinda Stockman, his wife. Provides financial assistance for families to receive individualized treatment plans.