A mother and son’s journey and why it matters to the Black community
“That boy is dumb as rocks.”
“Why can’t your son talk?”
“He’ll go off on you in a second.”
“Is he retarded?”
“In my medical opinion, your baby is normal,”
“Dude got mental issues.”
“He’s special alright – Special Ed!”
“It’ll cost $50,000 for intervention.”
“A good butt whooping will stop those tantrums.”
“You’re a bad parent.”
Sylvia Carter Smith has heard it all. As a parent of Wilton Smith, an energetic autistic teen who enjoys listening to music and navigating Google maps, it has been a long, difficult road. The mother of three boys ages 39, 33 and 14, Sylvia never thought autism would enter her life. She was 44 years old when she and her now late husband welcomed their “bonus” baby into their lives. Everything seemed normal.
“As an infant, there wasn’t anything unusual about Wilton,” says Smith. “He hit all his milestones, crawling and walking at the right times. But at 15 months, he wouldn’t look up at my eyes, and he wasn’t babbling like babies do. I thought he was just slow and lazy. I figured girls develop faster than boys.”
Physician Bias
When Smith took Wilton in for his regular medical check-ups, she casually mentioned Wilton’s slowness to his doctor.
“Even my doctor brushed it off. I thought, maybe I’m just trippin’. You know, young doctor versus old mama.”
But Wilton’s unusual behavior persisted,
“By 18 months, a light went off in my head. Wilton wasn’t pointing, saying mommy or daddy. He would line up his toys – Lego blocks, tracks, cars in a certain order, and they had to stay that way or he would have a meltdown.”
At nearly 2 years old, Wilton still wasn’t saying anything. Smith became worried and confronted Wilton’s physician. Again, he saw nothing out of the ordinary. This time mom put her foot down. “It was only when I got angry that he [the doctor] finally decided to run some tests.”
Smith found out that when it comes to Autism Spectrum Disorder [ASD], many health care professionals don’t pay as close attention to African-American children as they do White children. In studies conducted by the CDC, Black children are least likely to receive an ASD diagnosis as compared to their White counterparts. “I believe doctors don’t listen to us,” says Smith. Studies indicate she may be right. Compared to White children, CDC research suggests doctors often misdiagnose Black children as having other conditions such as ADHD or conduct disorder based on antisocial behavior. Therefore the prescribed treatment is ineffective.
Is the Black Community Ignorant or in Denial?
Over the years, Smith has found that many people in the Black community don’t understand the stigma, heartbreak and misunderstanding parents go through raising a child with autism. It extends to family members as well. There is profound denial that autism is a developmental disorder that needs early diagnosis and immediate intervention so children can grow up happier and live more productive lives. Smith also found that too many Black parents, especially young ones, don’t want to seek help for their struggling children. “These kids go undiagnosed,” Smith says. “Their parents don’t want to deal with the reality of it all.”
What is Autism?
Autism Spectrum Disorder (ASD) and the higher functioning Asperger’s Syndrome is a serious chronic developmental disorder that impairs a person’s ability to interact and communicate with other people. According to Autism Speaks, an advocacy group dedicated to promoting solutions and increasing understanding and support for people with ASD, autism is characterized by challenges with social skills, repetitive behaviors, speech and nonverbal communication, as well as by unique strengths and differences… The term “spectrum” reflects the wide variation in challenges and strengths possessed by each person with autism. The autism range is so vast; no two autistic children are alike. In fact, the Centers for Disease Control and Prevention states that one out of 68 (approximately 1.2 million) people under 21 years of age in the U.S. is diagnosed with ASD. Just imagine how many people are not diagnosed.
What Autism Isn’t
Autism Spectrum Disorder isn’t mental illness like bipolar disorder or schizophrenia.
Having autism isn’t being intellectually challenged or the politically incorrect term– mentally retarded. In fact a child with autism can possess average to genius intelligence. The characters Dr. Sean Murphy of the TV series “The Good Doctor” and Desna’s brother in the series “Claws” are examples of autistic savants. Autism is not Down’s Syndrome, which is a chromosomal disorder with physical and intellectual impairments. And autism is not being bad, or acting out willfully, though negative treatment from others can cause further withdrawal, isolation, and uncontrolled anger. Learning social and communication skills as early as possible is the key.
The fact is autism is on the rise in every community, Black, White, Hispanic, rich, poor and middle class. There are theories as to why, from vaccinations to electronic screens. Diet and environment have also been discussed as contributing factors. However, a study in Denmark by Stefan Hansen of Aarhus University in Denmark suggests that since Autism became a spectrum of disorders, it broadened the criteria for diagnosis. According to the 2015 Time magazine article, “This May Explain the Rise in Autism Diagnosis,” researchers determined that “60 percent of the increase could be attributed to these changes.”
Challenges Autistic Black Children and Parents Face
It’s already a struggle being autistic, but being autistic and Black has its unique challenges. Double that if the child is undiagnosed. Unfortunately many parents, especially in Black communities, are baffled as to why their children won’t talk, socialize or behave. Yet they refuse to entertain the possibility that something is medically wrong. Their children become antisocial and unproductive in school, and they are labeled stupid and as having behavior problems. Oftentimes they flunk out and drop out of school. It’s a problem a thousand butt whoopings won’t beat away and heads in the sand won’t wish away. Fear prevents parents from finding out what’s really wrong – or finding out too late; many fear blame, embarrassment and labeling.
The fear of labeling was never a concern for Smith. It never stopped her from getting the help Wilton needed.
“Wilton is a loving kid who’s unique in his own way,” she says. “I don’t dwell on him being labeled special needs as he may be. I think that when you’re not in full acceptance, you may feel that way especially if you’re ashamed or embarrassed of your loved one’s diagnosis. Those without awareness, education or compassion may find it easy to label. Each person with autism is unique… They all are definitely more than a label.”
Smith has navigated through the stigma and criticism, but she’s keenly aware of Wilton’s ongoing struggle and knows he’s trying. “Wilton is not social. Growing up, he didn’t like being in crowds like during Christmas celebrations with family. The noise would make him have a meltdown. A lot of it was caused by sensory issues such as bright lights; the scent of certain air fresheners; the ‘ding’ on Family Feud or Judge Mathis’ theme song.” Wilton didn’t know how to express his discomfort in words much like a baby crying because it doesn’t have the words to express those needs. Some family members were tolerant, but not all of them understood his disorder. Being judged is hard. But Smith knows where to place her faith. She relies on prayer and her church to give her peace. “It’s in God’s hands. Special angels protect my son.”
Early Intervention
Smith was proactive. Early intervention helped Wilton find his voice. Because of early diagnosis, Smith was able to plan out Wilton’s path. He was given an IEP (Individualized Education Program), a document developed for any child in the public school system in need of special education. He attended preschool and Chicago Public Schools and was fortunate to be in both regular and special needs classes.
“Wilton was fortunate to have the same teacher from first to eighth grades so he was able to be under the care of someone who loved him. Teachers are important for the success of the student. It takes patience and care.”
Wilton takes medication to help him stay calm and occupational therapy to improve motor skills and process sensory information so he can function better in his day-to-day activities. It made Wilton’s transition to high school much smoother. His new male teacher is slowly mainstreaming Wilton into regular classes. His goal: to improve his “people skills” so that he can mainstream completely.
Encounters with Law Enforcement
Another obstacle autistic people –especially teen boys – face is encounters with police. According to Autism Unites advocacy group, those with ASD are seven times more likely to have run-ins with law enforcement over the course of their lives, compared with people without a cognitive disorder. While there are no solid stats of how many autistic people are in prison, the Department of Justice’s Bureau of Justice Statistics 2015 report found that 2 in 10 prisoners and 3 in 10 jail inmates were listed as having a cognitive disability. It’s a fair assumption that with more than 2.3 million people incarcerated in the U.S., that thousands of autistic people, diagnosed and not, are “members” of the penal system. Not to mention, those unfortunate to have been shot (or killed) by police during a crisis.
Smith plans to have “The Talk” with Wilton about police enforcement. “I definitely plan on implementing some ideas, such as wearing an autism ID wrist band, and displaying autism awareness magnets on my vehicle. I feel that autism awareness and education should be mandatory for ALL Chicago Police Department [personnel].”
Lack of Resources in the Black Community
Special programs and support services for families of autistic and other special needs children are lacking in Black communities. Smith connected with two support groups, A Place For Me and Chicago Autism Connection, comprised of parents and professionals who offer encouragement and advice to each other. They plan fun family activities and host empowering seminars on topics to help keep families informed. Smith travels from her South Side home to the near West Side to attend meetings. She hopes that one day research will discover what causes autism and how to cure it. But in the mean time, she hopes her message encourages people in the community to understand autism.
“I don’t talk about autism for sympathy or pity. I talk about it because I want as many doors as possible to be open for my son. I want his life to be enhanced… I want him to know that he belongs and his being here is not in vain. I truly want others to understand and accept children and adults living with autism. Awareness! Awareness! Education is the key.”
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