Learning your child has autism is hard for any parent – especially if you're an immigrant adjusting to a new medical culture in the U.S., while fighting prejudices back home that your child might be cursed.
Mariame Boujlil, a native of Morocco who now lives in Charlotte, struggled with that three years ago when her son Zachary, then 2, was diagnosed with autism. In Morocco, talking about autism is taboo, she said. She knew she couldn't ignore the problem like people in her home country. But she didn't trust the American approach that often calls for prescription drugs.
Immigrants and minorities in the U.S. with an autistic child can feel caught between two cultures. To help parents like herself cope, Boujlil started a support group.
The group, World Alliance for Families and Children, helps parents navigate the U.S. health care system and provides information on treatment options. It also runs a summer school geared to their needs.
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Autism manifests itself with several different abnormal behaviors. Usually, it hampers personal communication skills and interaction. Doctors sometimes interpret signs of the disorder in immigrants and minorities as cultural confusion.
Boujlil says before Zachary's diagnosis, his doctor dismissed her concerns that her son didn't talk and rejected her hugs. “‘The doctor told me, ‘That's OK: You speak Arabic, French and Spanish. Your child is just confused,'” she said.
But Boujlil, 44, knew better: Before founding her organization, she had worked as an interpreter for Middle Eastern, North African and Hispanic families with autistic children, and recognized the signs.
Fighting shame and denial
Boujlil recalls a mother from the Middle East who said she didn't want anyone in the Arab community to know her child had autism. Another mother from Egypt with whom Boujlil worked told the doctor who had just diagnosed her son with autism: “We believe in God; he'll be OK.” She told the social worker her son needed rest, not the camp the social worker had suggested.
In certain immigrants' cultures, parents see autism as a hidden burden, says Roy Richard Grinker, an anthropologist at George Washington University who has researched autism in immigrants. That makes it hard for them to seek care in the U.S. “They may mistrust the medical establishment and have fears about privacy,” he said.
But often, they grow accustomed to a more open-minded mentality in the U.S., Grinker said. “Immigrant Americans are feeling more quickly empowered here,” he said. “One of the great achievements we've had in the U.S. is people are starting to talk more about autism.”
Experts say earlier diagnosis of children with autism – preferably before age 3 – often leads to better outcomes.
Help in Charlotte
Esmeralda Garcia feels more supported and informed about autism in Charlotte than she ever felt in her native Mexico. When her 6-year-old daughter, Marianea, was diagnosed four years ago in Garcia's hometown of San Luis Potosi, Garcia, 30, had never heard of autism.
After a year of treatments, Marianea hadn't improved. Garcia decided to move back to Charlotte, where she had emigrated with her husband some years before, so Marianea could get better health care.
Garcia saw an ad for Boujlil's group in a Spanish language newspaper and called Boujlil, who took her to the doctor and later helped enroll Marianea in school.
As Marianea played with other kids at a recent summer school party, her mother recalled the days when her daughter wouldn't talk to anyone. Medication has helped a lot, Garcia said.
Some autistic kids are hyperactive. Boujlil's son, Zachary, ran from room to room at the summer school party. He stopped to tear open a packet of Oreo cookies with his teeth and then threw the cookies on the ground.
But he has improved from the days when he would “just stare at a wall,” his mom says. Since Boujlil didn't want to put him on medications that she feared might deaden his personality, she put him on a gluten-free diet. He also went to speech therapy and will soon start behavioral therapy.
Zachary's progress has also improved Boujlil's life. She's in a culture where she can follow scientific developments about her son's disorder instead of just feeling victimized by its consequences, she said.
Part of her group's mission is to empower other parents.
Shirley Araya, who talks to Boujlil frequently, felt relieved to know what was wrong with her son when he was diagnosed with autism three years ago. But she was also depressed.
“We didn't even go to the supermarket, because I was so ashamed that my son would be screaming,” she said.
Araya put four locks on the doors of their family home in Statesville because Matthew kept running to the nearby lake. (Drowning is a leading cause of death among people with autism, according to studies). She put away all valuable objects because he was breaking things.
Araya, a native of Costa Rica, educated herself about autism. She realized treatment could improve his condition and she stopped trying to hide his autism from others.
That attitude made it easier for her to accept her 3-year-old daughter recently being diagnosed with autism. Araya laughed when she said her house now looks like a day care center, with instructions telling her children how to brush their teeth and flush the toilet.
“I don't care anymore that I have signs on my toilet, shower, all over my walls,” she said.