Disorder affecting African-American families in growing numbers
April is Autism Awareness Month, a time when the public is asked to place a greater focus on a developmental disorder believed by some researchers to possess the highest growth rate among all disabilities. According to a government report, the number of cases in California alone jumped a whopping 1,148 percent over the past two decades.
Normally appearing within the first three years of life, autism is most simply defined as a disorder affecting the brain’s normal development of social and communication skills. There are a number of theories about its causes; but the most serious and widely accepted medical research appears to suggest that a complex combination of genetic, environmental and biological factors may be to blame.
With the recent explosion of autism diagnoses in children, a growing number of African-American parents find themselves faced with difficult choices about treatment and care. Among them is Terri Greathouse-Gibson, whose 6-year-old son, Gabriel, was diagnosed three years ago with an autism spectrum disorder.
“Many believe that you have to be born with autism, but that is not my experience,” said Greathouse-Gibson, a businesswoman who owns Word of Mouth, a Las Vegas marketing company. “My son … was a very normal little boy when he was born, meeting all of the milestones in his development,” she said. “He was walking, talking and dancing at 9 months old, and my mother used to say that he was going to be a dancer.”
In Gabriel’s case, Greathouse-Gibson strongly believes the onset of autism can be traced to a visit the family made to a hospital intensive care unit when he was under a year old. They were showing support for her stepson, Nathaniel, who had been seriously injured on the football field. Seeing his baby brother, they believed, would lift the spirits of a young man who was facing possible paralysis.
“The hospital staff warned us that it was not advised to bring a baby under the age of 2 into the intensive care area,” Greathouse-Gibson recalled. “Rightfully so, because of the germs, and a child’s immune system is not built up yet. Gabriel was 11 months at the time, and we took him in to see his big brother … it really brightened Nathaniel’s spirit. We initially thought it was great. Upon our arrival back in Las Vegas, less then 48 hours later, Gabriel came down with a gastrointestinal virus. It attacked his body. He was throwing up, had diarrhea and lost seven pounds. He looked like a (baby suffering from) malnutrition.”
“Three months later, my friend was visiting from Belize and asked me if I was aware that Gabriel was not responding to his name and just staring at the television. We both called out to him — ‘Gabriel! Gabriel!’ — and he still didn’t respond,” she said. “He was slowly losing the skills he once had. It was all in slow motion, step by step, backwards. People started telling me it was a speech delay problem and we took all kinds of tests … and went through Nevada’s Early Intervention Program. Everyone said nothing was wrong with him, because he still displayed playful skills and was affectionate. I knew something was wrong, and didn’t know what to do initially because he didn’t have the stereotypical traits of a child with autism spectrum. He didn’t have the behavioral problem of (for example) hitting his head or not wanting anyone to touch him. “But, he was slowly withdrawing from the world. Now, as I was going through the process to find out what was happening to my son, he was due to get his wellness shots. I took him to his doctor and they indicated that he missed several of his shots and wanted to give him six to nine shots that same day. I didn’t feel good about it, and I got into an initial argument regarding the amount of shots they wanted to give him. The doctor and nurse assured me that it was OK, so Gabriel got all the shots. Shortly after Gabriel got his shots he really started to lose it — lose it! I want everyone to know that if your child has something that shakes up his immune system, such as a virus, and they are young, it is a big risk to (put) anything into his body that may cause some kind of disturbance. The person who knows best for your child is you — the parent, or (primary)caregivers. You are the people who know, because you are on the job and are the first responders to your loved one’s needs.”
Her recommendation for parents who may suspect autism in very young children: Think outside the box, because “nobody seems to really know how to deal with children affected by autism. The best defense that I have found is to go on the Internet and research the disease yourself. I knew I had to connect with my son one-to-one, and try to get back what he had lost. He started to get worse — spinning around, not speaking at all and not answering to his name.”
Like many faced with the realities of the American healthcare system, Greathouse-Gibson had to overcome a series of hurdles — long waiting lists, prohibitively high costs — in her quest to find a treatment for Gabriel that she could feel confident in. For parents in Nevada, there was a two-and-a half year waiting list for any treatment beyond basic speech therapy. After an emotional session with her son’s pediatrician, the doctor pulled some strings and secured a referral to UCLA Medical Center.
“When we got there, it was a sister who saw Gabriel, who was still (technically) too young to receive the autism diagnosis,” Greathouse-Gibson said. “She told us that he may be on the spectrum, and unfortunately when you are listed on the spectrum you can’t get any assistance. That’s the name of the game. You are or you are not. You almost have to label your own child to receive any type of assistance. … So, she renamed his diagnosis as autism and we started receiving assistance. I didn’t have a problem with it, because I knew he had it.”
In the years since, Greathouse-Gibson says she has become something of a self-educated “expert” on virtually all aspects of autism. For parents who fear that a young child might be battling undiagnosed autism, she recommends they “find out what is going on with your child’s brain, and get a CAT scan.”
“Early intervention is the key when your child is still young,” said Greathouse-Gibson. There is hope, she believes, because “you can retrain the brain and find out what works for your child. I call myself the victor, not the victim, and surround myself with others who are winning the fight against autism. Instead of taking on a position of ‘poor me’ … choose to be empowered.’’