For years, the medical community has studied and treated autism as a “white person’s” disease, and, today, research and therapy remain geared toward affluent, white people and families — leaving people of color in the lurch.
By Carrie Arnold
(Photo: Satish Krishnamurthy/Flickr)
Like many parents, Camille Proctor went to her first support group for parents of children with autism to feel less alone. Her son Hunter had just been diagnosed, and Proctor had lots of questions. All of the other parents at the various support groups she went on to visit were white; Proctor is African American. When she asked questions about how she should teach her son to interact with police, given that the wrong response by a black boy or man could be deadly, she just got blank stares.
“They had no idea how to respond,” Proctor says.
For its part, she says, the black community didn’t seem to understand what it was like to raise a child with autism. Her son Hunter’s repetitive behaviors, like flapping his hands and rocking back and forth (known as “stimming”), and emotional meltdowns were seen as bad behavior rather than signs of autism. When her son was screaming in Macy’s because he was overstimulated, a black salesperson went up to Proctor and told her Hunter “just needed his butt whipped.” Proctor felt utterly alone and misunderstood. Her dogged determination ultimately got her son the services he needed to thrive, but she knew other parents weren’t as lucky. She also knew that many other black children had autism just like Hunter, and that they were probably feeling just as isolated and scared as she was.
Not long after Hunter was diagnosed, Proctor founded the Color of Autism, a support group dedicated to helping other minority families affected by autism. The autism world prides itself on honoring neurodiversity, but it has been less successful at recognizing racial and ethnic diversity. The statistics are stark: Studies by the Centers for Disease Control and Prevention (CDC) show that rates of autism are essentially identical across racial and ethnic groups. But when you look at children and adults actually diagnosed with autism, white children are 30 percent more likely to receive an autism diagnosis than blacks, and 50 percent more likely than Hispanics, according to 2014 data from the CDC. Minority children are also diagnosed significantly later than white children.
Understanding autism, and helping those with the condition reach their full potential, means seeing all of its shades.
These differences are more than trifling discrepancies. Earlier diagnosis means earlier intervention, which is closely associated with better outcomes.
“Every month that accrues is problematic because the effects of treatment start to diminish,” says Jason Travers, an assistant professor in special education at the University of Kansas. “Minority children are less likely to get the label of autism, and it takes a longer time for them to get services.”
These racial and ethnic disparities extend to other areas of autism too, including research, treatment, and advocacy, and, in each area, white families have the upper hand. Luckily, new research is helping to illuminate the true diversity of autism in the United States, and to help make services available to all families who need them. Understanding autism, and helping those with the condition reach their full potential, means seeing all of its shades.
In some of the first clinical descriptions of autism, psychologist Leo Kanner wrote that many of the families who sought his opinion were white and middle- to upper-class. What Kanner failed to consider was that the parents who had the resources to seek out a specialist about their child’s developmental problems were likely those with resources to begin with. In 1940s America, those parents were almost exclusively white, and ever since, autism has been treated largely as a white disease. Even when autism began to reach wider public awareness and understanding in the 1980s — especially after the movie Rainman — many Americans continued to assume that the condition only affected white people.
Hearing adults in her life talk about Rainman was the first time that Jackie Pilgrim remembered hearing about autism.
“I heard some of my relatives talking about the movie, and they said that autism was just a white people’s problem,” Pilgrim says.
She didn’t hear about the disorder again for another 20 years, until her son began showing developmental delays, and Pilgrim began her search for answers. Pilgrim’s son was born at only 30 weeks gestation and spent the first three months of his life in the neonatal intensive care unit. As a result, he had always been somewhat behind his peers developmentally, but for a while he seemed to be progressing — until that progress abruptly stopped, shortly after his second birthday.
“Everything my son was went away,” Pilgrim says. “He was just a shell.”
Unsure of what was happening, Pilgrim opened Google and typed her son’s symptoms into the search bar. The first result that popped up was a page about autism. When she visited doctors, though, they wouldn’t believe that Pilgrim’s son had autism. “Nobody wanted to say the word,” Pilgrim says.
Regardless of whether a parent immediately thinks of autism when they see their child struggling, race or ethnicity doesn’t make a difference in when a parent first brings a child to the pediatrician with their concerns, according to John Constantino, an autism researcher at Washington University in St. Louis.
“Parents of all backgrounds generally do a really good job of identifying when something is going on with their child, when he or she starts falling behind,” Constantino says.
Here, however, is where the paths diverge. Getting an autism diagnosis for any child can be a slog, with multiple appointments with a variety of specialists. An average of two years passes, regardless of race, between the time parents first recognize issues with their child and when the child receives an autism diagnosis. For minority children, however, that time tends to be significantly longer, although time to diagnosis has decreased across the board, according to Constantino. These children are either left undiagnosed, or are misdiagnosed with an adjustment or conduct disorder. And minority children who are diagnosed with autism at younger ages are generally more severely affected than their white counterparts, according to a 2012 study in the Journal of Autism and Developmental Disorders.
“In minority children, people tend to see behavior problems rather than an impaired kid,” says Celine Saulnier, clinical director for research at the Marcus Autism Center at Emory University.
“I cashed in my 401K. Insurance didn’t cover a lot of Hunter’s treatment, and if I couldn’t come up with the money, he couldn’t get treatment. I went from something to nothing, just to get him therapy.”
Research has found that even pediatricians and other medical experts continue to labor under the delusion that autism is primarily a disorder among white children. They are also more hesitant to respond to the concerns of minority parents, less likely to be using proper autism screening methods, or simply less likely to be aware of the autism symptoms in very young children. The result is that parents like Proctor and Pilgrim are more likely to be given the “wait and see” approach, further narrowing the window at which autism therapies are most effective.
In the U.S., poverty and ethnicity are so tightly linked that it’s difficult to disentangle the effects of socioeconomic status from those of race, says Lindsey Williams, a doctoral student in psychology at Louisiana State who is completing her dissertation on this topic. Regardless of ethnicity, many poor families face similar problems in getting help for their children.
“It often takes multiple appointments to get a diagnosis, which is a problem in families where parents are paid hourly, only have a single car, and also have to arrange childcare for other siblings. Each additional step it takes for an assessment means that more people fall through the cracks,” Williams says.
The problems aren’t limited to autism diagnosis; they persist into the treatment process. For one thing, many therapies that help autistic children learn social and communication skills require that therapists come to the home. For families with relatives who are undocumented immigrants, therapists coming in and out regularly can inspire apprehension and fear. Others may be embarrassed about the quality of their living quarters, according to Williams.
Minority children are also less likely to receive specialty care related to autism. A 2013 study in the journal Pediatrics found that black children with autism have one-third the odds that they will see a gastrointestinal or nutritional specialist compared to white children. They are also less likely to receive treatment from neurologists, psychologists, psychiatrists, sleep specialists, and epilepsy specialists. Nor does insurance necessarily cover any of the therapies these children do get, which can leave already strapped families even worse off.
When Proctor’s son was diagnosed, she considered herself to be comfortably middle class. Now, she doesn’t.
“I cashed in my 401K. Insurance didn’t cover a lot of Hunter’s treatment, and if I couldn’t come up with the money, he couldn’t get treatment. I went from something to nothing, just to get him therapy,” Proctor says.
Paul Leigh, a health economist at the University of California-Davis, analyzed the amount of money the state of California’s Department of Developmental Services spent in the 2012 fiscal year on each child with autism, based on age, race, and other factors. The results, published last month in PLoS One, revealed that the state had spent $11,480 for each white child between the ages of three and 17, but only $9,571 for each Hispanic child and $9,482 for each African-American child. Although some of this disparity may be explained by differences in the cost of therapists in different parts of the state (it takes more money to pay for a therapist in pricey San Jose, with a large white and Asian population, than in the Salinas Valley, which is poorer and predominantly Hispanic), Leigh says that the discrepancy is still troubling.
“African-American and Hispanic children don’t need fewer services than white children,” Leigh says.
The situation doesn’t necessarily improve once children with autism are old enough to enter school. In states like California, once a child starts attending public school, government funding for autism therapies shifts from the state to the local school district — and convincing the school district that a child does, in fact, have autism isn’t always simple. Some districts accept an outside medical professional’s diagnosis, while others don’t. For children who are still undergoing the “wait and see” approach, many receive a broader diagnosis of a developmental delay, which entitles a child to different services than autism would. Getting the proper services for a child often requires detailed knowledge of the inner workings of the school system, a comprehension of the minutiae of laws and regulation, and the time and ability to show up at meetings armed with information. Some parents end up hiring a professional advocate to assist, but not all families can afford to. Those without can be left in the lurch.
Even most of what scientists know about autism — what its prominent characteristics are, what genetic and biochemical pathways are affected — is based on research done primarily among white children and adults. Participating in DNA studies often requires blood samples from the child and from both parents — a problem, since there’s a significantly greater number of black than white children live in single-parent households. This persistent bias is one of the reasons that more than 85 percent of the 1,167 families enrolled in the Autism Genome Project Consortium were of European origin and only 2.3 percent of people enrolled in the Autism Genetic Resource Exchange were black.
“We need more and more families for gene discovery studies in complex diseases, and the gap is widened even further because African Americans are even more underreported even as the size of studies is exploding,” Constantino says.
When Travers reviewed 408 peer-reviewed studies on evidence-based practices in autism, he found that only 73 of these studies — less than one in five — reported the race of participants. Of those studies that did report race, Travers’ March 2016 article in the Journal of Special Education revealed that nearly two-thirds of participants were white. Only around 6.8 percent were black and 2.5 percent were identified as Hispanic.
Researchers also don’t know whether the symptoms that parents first notice in their children differ by race and ethnicity. If some groups of parents are more likely to notice, say, social difficulties while others notice repetitive behaviors, it could be useful to help doctors zero in on what might be really going on.
Scientists have slowly begun making inroads on these fronts, and have sought to recruit more study participants from diverse communities while providing educational opportunities to minority parents. In the absence of concerted help from larger autism advocacy organizations, people of color have created their own grassroots efforts to help those on the spectrum, such as Autism in Black and Proctor’s group, the Color of Autism.
The autism community has made tremendous strides in educating the general public about neurodiversity and embracing the range of ways that different brains can work. They need to take that same effort to embrace the full range of skin colors that people with autism also have.
“Autism is seen as a white disorder. It’s not a white disorder, it’s a people disorder,” Proctor says.
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