Latinos as Autism Caregivers
Autism families are accustomed to facing enormous obstacles securing recognition and services for their children. But not all families face these obstacles in the same way or to the same degree. While each individual autism case is unique, making generalizations difficult, there is a growing recognition among experts that ASD children from minority backgrounds face unique ethnic and racial barriers from the start, barriers that tend to compound over time. For example, according to the Centers for Disease Control and Prevention (CDC), minority children on average receive an early diagnosis three to five years later than Caucasian children with ASD do. That means many simply miss the critical intervention period in which the development of stronger cognitive and communication skills could make a real difference in their ability to function more independently in adulthood.
Latino ASD children and adults appear to face some of the worst group barriers. In addition to ethnicity, these barriers may include language and legal status (some 20 percent of the 53 million Latinos are undocumented, while 26 percent of those here legally are non-citizens, limiting their access to public assistance). Latinos in 2001 surpassed African-Americans as the country’s largest minority group (13 percent then, 17 percent now) and with relatively high birth rates, and ongoing immigration, are expected to become nearly 30 percent of the nation’s population by 2050. (In fact, Latinos already comprise a disproportionately high share (25 percent) of American children under 5). That means their share of the total autism population is growing exponentially; it also means that the potential impact of under-diagnosed Latino autism for Latino adults—and for American society as a whole—is growing rapidly, too.
The challenges Latinos families living with autism face derive from multiple sources. It’s tempting for many public health professionals to couch the issue in terms of poverty, lack of education and low health awareness among Latino families, especially if they’re immigrants. Those Latinos that do immigrate from abroad often come from countries where autism is too often lumped under the broad category of “mental retardation” or confused with other intellectual disabilities. And if specialized diagnostic and treatment services for autism are available at all, generally only a wealthy few can access them. That means Latino immigrants especially have an enormous amount of catching up to do—and often, unless they arrive with their children early, and get a proper diagnosis—they may miss the critical intervention period.
The Impact of Cultural Difference
But even American-born Latinos, it turns out, may fare no better than their immigrant counterparts. Sandy Magaña, a professor in the Department of Disability and Human Development at the University of Illinois at Chicago, has been studying Latino ASD families for years. Her research has shown that Latinos aren’t included in clinical trials for autism in proportion to their numbers, and that even the diagnostic instruments used by clinicians fail to take into account cultural differences in the perceptions of Latino mothers that affect the way that they might report a potential disability or development delay in their child. Unless clinicians are Latino themselves, or have a high degree of “cultural competency” they may not realize that the “difficult” child the mother is describing actually has autism, Magaña’s research shows.
Ethnic and racial health disparities—a polite word for “institutional racism” or “discrimination”—appear to affect Latinos with ASD at every stage of their development, compounding the problems first encountered in childhood. For example, what happens when under-diagnosed autistic Latino children enter the public schools? “To be honest, they get royally screwed, there’s no other way to put it” says Jan Blacher of the University of California at Riverside, another Latino autism expert. Blacher’s the only US health researcher thus far to study Latino children with autism over time through a series of longitudinal studies funded by the National Institutes of Health (NIH). She says that most Latino parents don’t obtain the critical special needs support (including all-day behavioral aides) that non-Latino parents do, in part because they simply don’t realize that such support is available. But even when they do, public authorities may not be amenable to accommodating them, she says. And in the face of institutional resistance, these parents are rarely sufficiently organized to demand that the schools comply with the law the way many more affluent non-Latino parents do.
Data from California, home to nearly one-third of the nation’s Latino population, and the first state in which Latino numbers are roughly equal to those of Caucasians, seem to bear out Blacher’s blunt assessment. Under state law, public monies for autism services, many of them school-based, are managed through 21 regional non-profit centers. However, at 14 of these centers, spending on Caucasian children still far surpasses spending on Latino children, according to a review of the most recently available data conducted by the Los Angeles Times. At the regional center that serves Los Angeles County, for example, spending on Caucasian youngsters with autism averaged $12,794 per child in 2011 compared to $4,652 for Latinos, or almost three times as much, the Times found, despite state guidelines mandating that spending on autism and other disability services be distributed equitably. Contacted by the Times, a spokesperson for the Los Angeles center refused to comment on the data or the newspaper’s report.
The Role of the Family
How much of the responsibility for disparities might lie with Latino families? That’s a matter of considerable dispute. Some multicultural experts say that Latinos are sometimes overly fatalistic about their life circumstances, or are afraid to acknowledge that their child has a serious problem in front of other family members for fear of being blamed or judged for their child’s condition. That may limit their willingness to fight for better services, they say. Magaña agrees, in part, noting that many first-generation Latinas still suffer from a “martyr” complex which consigns them to a more traditional family role as the self-sacrificing housewife and mother. But that doesn’t mean these mothers won’t fight for their children—just the opposite, she says. She also notes that “Latino families, unlike Anglo families, don’t generally think in terms of how to launch their ASD young adults into careers and marriages outside the home.” Instead, according to Magaña, because Latinos tend to prioritize family unity and solidarity across several generations, “they fully expect to take care of their children in perpetuity, if need be.”
Raul Escobedo, now 29, is a good example of an ASD adult with severe autism who still lives at home with his parents and two younger sisters. Born in Mexico like the rest of his family, Raul was lucky to receive an autism diagnosis at age 3 after his parents decided to borrow the money to fly to Chicago on a tourist visa to see a specialist after realizing that quality care for Raul simply wasn’t available in Mexico. Once their suspicions were confirmed, the family then took another bold step: They decided to remain in the US illegally, largely to ensure that Raul could get better care, even at the risk of being arrested, jailed and deported.
Raul’s sister Gissel, who was also born in Mexico and accompanied her parents and Raul to Chicago, says the entire family, including her younger sister, are actively involved in taking care of her brother. Despite his early diagnosis, Raul never developed effective social and language skills but did receive a minimum of special education support in the public schools (just 30 minutes weekly) until he started having violent episodes (or “meltdowns”, as she calls them). Gissel says the episodes occurred every hour and lasted for seven years, beginning at age 15. The daily burden on her entire family was enormous, she says. However, even now, at age 26, Gissel, who has a Master’s degree in Education from the University of Illinois at Chicago, has trouble thinking of her own future independently of her brother’s daily care issues. “I don’t know how I am going to balance, for example, my professional life with him,” she says. “And I’m not even thinking about a married life at this point. The truth is, we’ve never sat down as a family and talked about the future. We live moment to moment and just cherish all the time we have with Raul. We are a very united family.”
In Gissel’s view, the biggest obstacle Raul faces is his legal status. While she’s recently qualified for Deferred Action for Childhood Arrivals (DACA) under the Obama administration's provisional legalization program for the children of undocumented immigrant parents, her brother—and her parents—are still in legal limbo. And even with provisional legal status, under current rules and without a more comprehensive legalization plan, Raul still won’t qualify for a day program, much less for assisted group living or another potential out-of-home solution, she notes. “He might not be able to work or earn a degree, but he still has the ability to learn, and to contribute, instead of just stagnating,” Gissel says. Right now Raul is strictly homebound, except for emergency hospital visits. In fact, the family doesn’t even drive to the park, much less take family vacations, for fear of being detected and possibly deported. Gissel’s father still doesn’t have a driver’s license, but may soon be eligible for one after the state legislature passed a law overturning the former ban for undocumented immigrants.
The case of Matiana Ovalle, the mother of 22-year-old twins, David and Carlos, further highlights the challenges Latino ASD families face but can still surmount as long as culturally-tailored support is available, and the family fights for it. Ovalle, who immigrated to the US from Mexico as a young girl, directs Grupo Salto, a non-profit organization based in Chicago that serves some 400 Latino ASD families, many of them with adult children like her own. Most Latino families, she says, simply aren’t aware of the services that are available to them, and even if they don’t face a language barrier, they aren’t necessarily accustomed to speaking up and demanding that they receive equitable treatment. Her organization, founded in 2003 and still operating on a shoestring budget, tries to fill that void. In addition to providing Latino families with strategies to access the often forbidding public health care system, it provides collective emotional and moral support. Even while bridging and adapting to the dominant culture, many Latino families need to have a place of their own to commiserate, share stories, and hugs, she says.
Grupo Salto may be unique nationwide in the special emphasis it places on Latino ASD adults in transition, sponsoring an annual tour of universities and colleges for high school seniors who feel ready and able to tackle the challenge. Families also network through friends and colleagues to find their children jobs. David, who has performed in his mother’s small dance company since he was a young boy, is about to become a dance instructor’s assistant. Carlos, meanwhile, has a part-time job as an audio-visual aide. Both are entering college, but still live at home. “It’s a start, and we’ll just have to see where things go,” Ovalle says.
The Grupo Salto model—a quiet partnership with a large mainstream university—is one way of ensuring that linguistically isolated ASD families outside the cultural mainstream get the extra support and guidance they need. Blacher’s doctoral program at UCR and others at universities like Drexel also conduct special outreach to ASD children and young adults in low-income Spanish-speaking communities. But these efforts reach only a small fraction of Latino families. Magaña, who applauds Grupo Salto’s efforts and assists them whenever she can, says leaving it to Latinos to develop their own informal ASD support groups isn’t enough. In her opinion, the mainstream public health system needs to step up to the plate and address disparities more pro-actively, in part by ensuring that clinicians know how to diagnose Latino children properly, and by conducting more pro-active bilingual outreach of their own, above all, to ensure equitable access.
Since last year, Magaña has been working with a team of researchers to test the use of special “autism educators,” based on the promotora de salud (community health promoter) model that’s proven so effective in getting health services to Latinos in low-income communities throughout the Spanish-speaking world. The idea is to train Latina mothers with ASD children to go out into Latino communities nationwide to help educate and mobilize other mothers like themselves. The basic model was first tested successfully in a pilot study Magaña conducted in 2011 in Milwaukee with Latina mothers of children with disabilities. Her most recent series of federal health grants will allow the model to be applied for the first time to mothers of children with autism. Magaña’s past research has shown that Latina mothers are starved for more information about how to help their children and young adults. “Getting information from their cultural peers with similar experiences in a language they can understand results not only in greater awareness of the issues, but a determination to do even more for their children,” she says.
Ovalle, who works for the University of Illinois at Chicago, says she feels lucky to have received support from autism professionals in her workplace, who have helped her find support for her twins over the years. However, what her case and that of the Escobedos seem to suggest most is that strong families with socially active mothers are an unusually powerful protective factor for autism care in Latino communities, a finding that could have powerful implications for Anglo families, too. Magaña’s past research has shown that Latino mothers with ASD children report significantly lower levels of depression and higher rates of life satisfaction than non-Latino ASD mothers—this despite the fact that Latina ASD mothers also suffer twice the divorce rate of Latina mothers with neurotypical children. Equipped with the information and support they need, these women, many of them poor and with limited English skills, will stop at nothing to help their ASD children have a better life, Magaña says, a life they hope—despite their children’s autism—will be better than their own.