• 

  CREST | Research

  IES awards College researchers $4.8 million/5 years to create a new doctoral training program for educational scientists

  MORE

• 

  CIRGE | Research

  CIRGE has been busy: its 5-Years Out study drew wide attention and it has hosted three int'l workshops on PhD education...

  MORE

•  

Application Deadlines

Scholarships & Funding

Courses

At A Glance

Calendar

Giving

home > research > rtm_08

Research

That Matters

THE PREDICAMENT OF MULTILINGUAL IMMIGRANT PARENTS WITH A SPECIAL CHILD

Did something the mother ate affect the baby?
Is the father paying for an ancestor’s bad deeds in a past life?Did skipping prayers invoke the anger of the Gods?
Did Allah honor their family with the gift of this special child?

Doing right by a child with special needs may be doing right by heaven, but that job is doubly difficult for immigrants, points out UW researcher Brinda Jegatheesan, whose pioneering studies focus on South and East Asian immigrant families with young children with autism.

Speaking in a second or third language — or working through a translator — the families must try to navigate a bewildering system of doctors, schools, therapists and specialists who may not understand their culture, family structure, or concerns. One expert may insist the family set “independence” as an objective for their 5-year-old with developmental disabilities, when it is not a goal they value. A doctor may want to deal only with the mother and father, when aunts and uncles and grandparents are invested in the daily care of the child and insist there’s nothing wrong with the child — just with the parents. And aren’t parents supposed to respect the wishes of elders, the extended families ask.

“We have to widen the circle, educate the entire extended family in many cases,” says Jegatheesan.

Federal mandates require that these children receive culturally sensitive and appropriate services, and that their families get support and training. That, in turn, requires a deep understanding of the backgrounds and belief systems of these families, and that’s not happening with sufficient frequency, says the assistant professor in educational psychology and Early Childhood and Family Studies in the College of Education.

“Take policies and practices based 99.9 percent on knowledge of Western European cultures and apply them to a whole group of immigrants who come from a wide range of belief systems, treatment systems and languages, and you get a complete mismatch for intervention,” she says.

Jegatheesan cites troubling statistics. An estimated six million children under the age of 18 in the United States who are from culturally and linguistically diverse backgrounds have a communication disorder, such as autism. Yet almost all research done on families with autism is limited to European-American families, and most are done in clinics and lab settings.

The UW researcher broke the mold, taking her work into the homes and communities of immigrant families. The research was demanding, often personal, and endlessly tangled by cultural subtleties and family mistrust of outsiders.
Working with Muslim families in the Midwest, Jegatheesan sometimes had to wear a head veil, cover her body with loose garments, and avoid eye contact with men. Although she carried a notebook for data collection, she couldn’t write while in the middle of conversations. It was considered impolite. Instead of asking direct questions, she learned to listen for answers in the telling of folk stories, myths, tales of the past.

Asian families she contacted for studies in the Seattle area were often reluctant to participate. Some recalled bad experiences with prior researchers who’d offered some financial compensation, conducted their study, then cut connections with the family, without bothering to answer follow-up questions about where to find a speech therapist or whether an experimental program might work for their child.
“The families’ opinion is, ‘If I helped you with your research, why can’t you help me with information?’ It’s give-and-take,” says Jegatheesan.

The immigrant families with whom she worked often operated on inaccurate information. One family told her that Homeland Security would take away their green cards if agents discovered they had a child with a disability. Many were uncomfortable and mistrustful of Jegatheesan’s young graduate students at the UW. If they were going to share intimate family details and experiences, they wanted to talk to an adult with life experience.

Jegatheesan spent months gaining the trust of the families, sometimes turning to community workers as liaisons to convey the message she wasn’t a gone-tomorrow researcher, but instead was someone committed to bringing change to the child’s situation. “With immigrant families, you have to have their welfare foremost in your research. This work is all about relationship building,” says Jegatheesan, who still fields 2:00 a.m. calls for information from families she worked with years ago.

A Singaporean Indian by nationality, Jegatheesan is uniquely suited to the task. She is fluent in six languages and has taught regular and special education classes in Singapore, India and the U.S.

Jegatheesan has great compassion for the low-income immigrant families who work with her. Some are so overwhelmed by the expenses and complications of caring for a child with autism that they stop seeking assistance. One Asian family she met couldn’t afford a wheelchair for their child and didn’t know how to go about asking for one, so they carried their child to and from the school bus stop every day. “The low-income immigrant families don’t have the tools to be advocates. They don’t know how to be proactive for their child,” she says.

Even strong immigrant advocates struggle with the system. Many in Jegatheesan’s studies were offended by doctors and therapists who made what the families perceived as negative comments about their child. When professionals said their child’s problem was “untreatable” or “lifelong,” parents suspected them of giving up on the child. Many families felt it was their religious duty to fully include the child in social, cultural, religious traditions, raise him as normally as possible, and hold high expectations.

One mother told Jegatheesan: “Why do they have to say he cannot do this, he cannot be this way or that way? That’s what is bothering all of us.”

Such problems with professionals can ripple into the classroom. Jegatheesan’s education students at the UW have complained that some immigrant families can be “difficult” to work with. She explains the families’ trials: the fear of knowing something’s wrong with your child, the difficulty communicating those fears in a non-native language, the delays in diagnosis and care caused by miscommunication. “The parents come to preschool and there’s this wonderful teacher, and she wants to do right by them, understand their culture, but they’ve had this terrible time with professionals in the past. They sometimes think, ‘Why would I even think she is any different than the rest?’"

It becomes the teacher’s job to repair the damage done, and the teacher may have no inkling of how to bridge the cultural chasms. Those divides can be deep. Some therapists in Jegatheesan’s studies advised families that their children with autism should “stick to English” at home — speaking one language was hard enough. But Jegatheesan saw that children with autism often thrived in multilingual households, speaking Urdu with elders, reciting prayers in Arabic, using English with cousins. “The therapists said parents were ‘creating chaos’ in a child’s mind by switching languages,” she says, “but these children navigated three or more languages with ease.”

Much of what she witnessed flew in the face of therapists’ recommendations. Western therapists often advise parents to create a quiet, regulated environment for children diagnosed with Autistic Spectrum Disorder. Jegatheesan’s field notes described houses jammed with friends and relatives, each voice vying to top the other, usually in multiple languages. Radios and TVs were on full blast, and children ran through the rooms and engaged in noisy play — with the child with autism often in the center of activity.

This might be the same child who sat quietly every day in his school room, speaking only a few shy words of English. “I found these children were able to do well in two settings, as though they recognized, ‘I can be this way at home, this way at school.’ In that way they are gifted, even if they have severe autism,” says Jegatheesan.

The need to acculturate Western research, professional services and education to diverse perspectives is urgent, she says. The immigrant population in America has more than doubled in the past decade, and immigrant offspring are the fastest-growing percentage of the nation’s child population.

As their numbers soar, so does the demand for disability services. California, with one of the largest immigrant waves, reported a 634 percent increase in autism cases from 1987 to 2002, and 47 percent of the cases were ethnic minorities.

The problem is not going away.

“How can you really help without understanding the cultural and religious backgrounds of these families?” asks Jegatheesan. “It’s time to stretch beyond our comfort zones, diversify our knowledge base, and discard our cultural biases.”

For more information about Jegatheesan’s research see:

Jegatheesan, B. (2008). Muslim children with autism learn to pray. In R. A. Shweder, T. Bidell, A. Dailey, S. Dixon, P. J. Miller, & J. Modell (Eds.), The Chicago Companion to the Child. Chicago: University of Chicago Press.