When her third child, Ian, was a baby, Zenora Thompson knew something was different. At first, Ian mirrored his talkative family and verbalized normally. But, suddenly, he stopped talking completely and became fretful.
"Nothing would satisfy him," says Thompson, who works as a nurse in Ohio.
"He would cry at everything, and wouldn't ever rest. He would just collapse when he went to bed."
When Thompson took Ian to the pediatrician's office, her doctor said she was worrying too much and comparing Ian to her other children. The doctor recommended Thompson give her son more time to develop. But nothing changed, so Thompson brought Ian back to the pediatrician. "Just to appease me, she finally ran some structural tests done for issues with his ears and things, and it came back no problems," says Thompson. For over a year her doctor told her she was overreacting.
When Ian was two years old, Thompson knew her son had a serious behavioral problem. She took him to a psychologist, who told her Ian had symptoms related to autism, but wouldn't diagnose him yet. Most children are not diagnosed with autism until two years old.
Thompson took her son to a special needs program at his preschool. After sharing the psychologist's findings with her pediatrician, they made an evaluation that would eventually develop into a diagnosis for autism. "From day one I learned to pick my battles," Thompson says.
The Thompson story unfolded during the 1980s, when the autism ratio was much lower. According to studies conducted at the time, 0.3–0.4 per 1,000 American children were diagnosed, according to the Journal of the American Medical Association. There weren't many medical resources, and Thompson was handed a book that dated back to the 1930s to consult for advice and research. This book associated autism with "cold mothers," blaming them for the disorder in their children.
"At that time I just cried," Thompson says. "I thought there wasn't a lot of hope for my child." People told her she might have to institutionalize her son. "Thank God now it's different."
Yet, even in the 1990s when Ian was enrolled in a Cleveland school for special needs children, his medical care was lacking. "I changed my son's pediatrician, and she said when she met him for the first time, 'Can't you control this child?'" Right then, Thompson told her, "If you're going to treat my son and this population, you have to be aware of what's going on with him."
Despite more prevalent resources and an ongoing national dialogue concerning children with autism, research indicates that many of these resources may still be missing from minority communities, particularly among African Americans.
According to a study conducted in Atlanta between 2000 and 2006 by the National Center on Birth Defects and Development Disabilities at the Centers for Disease Control and Prevention, non-Hispanic black (NHB) children were less likely than non-Hispanic white (NHW) children to be identified with less severe autism spectrum disorders (ASDs).
"While the overall prevalence of ASD was indeed lower for NHB children in all years that we examined, among those children who had been identified, diagnoses in NHB children were more likely to be those generally associated with a higher level of severity," said Laura A. Schieve, Ph.D., an epidemiologist and one of the principal investigators of the study. "In comparison, NHW children had a wider range of all ASD subtypes identified."
The conclusion of the research found an "under-identification" of ASDs in non-Hispanic black children. "If the ASD prevalence was truly lower in NHB children, we would expect to see that they had a similar distribution of types of ASD as NHW children," Schieve says. She is also one of the principal investigators with the Study to Explore Early Development (SEED), a multisite case control study of autism spectrum disorders in U.S. children.
"We can't give [this population] enough information, and before you know it, a child where they needed minimal intervention now needs maximum intervention because they are misdiagnosed," says Thompson.
In 2002 white children were diagnosed, on average, at 6.3 years old, versus black children, who were diagnosed at an average 7.9 years old, according to a study conducted in Philadelphia by the University of Pennsylvania. David Mandell, Associate Director for the Center for Autism Research at the Children's Hospital of Philadelphia and one of the authors of the study, concluded that these disparities might exist as a result of a parent's interpretations of symptoms. "There may be cultural differences in how the behavior of children with autism is viewed or awareness of what these symptoms mean. More likely, there may be challenges to communication between parents and the clinicians who are doing the diagnosing."
In the UPenn study, black children also spent more time in treatment with a physician before receiving an official diagnosis. When children were diagnosed, NHB children were also more likely than NHWs to be misdiagnosed with conduct disorder and adjustment disorder, while they were 2.6 times less likely to receive an autism diagnosis than non-Hispanic white children.1 Mandell said the most important areas where a misdiagnosis might affect a child with ASD is "mistreatment, especially with medications, and lack of appropriate intervention."
According to a 2007 National Early Intervention Longitudinal Study, children with ASD have shown better prognosis with early diagnosis and intervention. Unfortunately, minority families at lower income or education levels were less likely to enter early intervention therapy.2 Under-identification of ASDs in non-Hispanic black children could affect the child's developmental progress by limiting their access to care. If a child is diagnosed under three years old, they may qualify under the Individuals with Disabilities Education Act for early intervention services and evaluations.
"While early intervention is extremely important, intervention at any age can be helpful." Schieve says. Developmental screenings are short tests used to determine if children are learning basic skills when they should be, or if they might have delays. Schieve says all children should be screened for developmental delays and disabilities during regular well-child doctor visits at nine, 18, and 24–30 months. Additional screenings might be needed if a child has high risk for developmental problems due to preterm birth, low birth weight, or other reasons. In addition, all children should be screened specifically for ASDs during regular well-child doctor visits at 18 and 24 months. Yet another screening might be needed if a child is at high risk for ASDs (e.g., they have a sister, brother, or other family member with an ASD) or if behaviors sometimes associated with ASDs are present.
For the Thompson family, who had few resources to turn to when Ian, now 22 years old, was growing up, intervention took some creativity. Their first area of focus was building a support system within their own family.
"Right away when I came home and told [his siblings] he was different, and asked them how they were going to help their little brother, they were my biggest supporters," Thompson says. Ian's brother offered to teach him sports, while his sister helped him with getting dressed and hygiene. Ian's father focused on verbal and social interactions; consequently, Ian is the most verbal with his father.
The Thompson family also found their church to be more supportive than expected. In their religious community, autistic people were not always allowed to attend services because their condition was "often looked on as possession," says Thompson. Today, close friends of the family are as supportive as they can be, but socializing is still challenging for Ian because he is so unwilling to break from routine and doesn't trust many people.
The most difficult moments with Ian happen in public. "Going to the mall I want to put a T-shirt on my son that says 'I'm not bad, I'm just autistic,'" said Thompson. "Some days you're up to fight those battles and other days you just aren't up to it. I learned to pick my battles and chose the ones that would impact change."
Ian was fortunate to enroll in a special needs preschool as soon as he was diagnosed. According to a 2002 study on Racial Inequality in Special Education, there is a lack of early intervention for minority children, including "inadequate services, low-quality curriculum and instruction, unnecessary isolation from their nondisabled peers, and hardship."3 The study concluded that these factors might exacerbate learning and behavioral problems in minority children with special needs.
As a minority nurse, Thompson wants to research the issues her son faces now as a young man with ASD. Some of Ian's friends with ASD are currently going through difficult phases, especially those who were diagnosed later in life, she says.
One particular challenge is diet. Young adults with autism typically don't monitor their own dietary intake. As a result, many of those who are not regularly monitored by their families suffer from hypertension and diabetes—medical issues minority communities already experience in disproportionate numbers—in addition to their ASD symptoms.
"Special needs populations are living longer," Thompson says. "To provide them with quality and competent cultural care we have to become informed about it."
According to a study regarding young adults with special needs, 75% of African Americans in this population are unemployed after being out of school for two years. Fortunately, Ian's mother enrolled him in an adult activity center where small businesses send in projects for members of his team to work on. Ian works half the day, and the other half he has activities and socializes. Ian's opportunities are in many ways due to his mother's research and advocacy for her son. It's another battle she does not consider over.
"There is not a lot of research on adult autism and not a lot of facts on treatments and modifications for them in adulthood," says Thompson. "Consequently I'm back in a box again a little bit."
1. Mandell, D. S., Listerud, J., Levy, S. E., and Pinto-Martin, J. A. (2002). "Race Differences in the Age at Diagnosis Among Medicaid-eligible Children with Autism." Journal of the American Academy of Child and Adolescent Psychiatry, 41:12, 1447-53.
2. Hebbeler, K., et. al. (2007). "Early Intervention for Infants and Toddlers with Disabilities and Their Families: Participants, Services, and Outcomes."
3. Losen, D. J., and Orfield, G. Racial Inequity in Special Education, (Cambridge, MA: Harvard Education Press, 2002).