Lost in Translation: Autism Is Tough to Diagnose and Treat and for Immigrant Families, It Can Be Impossible
Editor's note: All interviews with parents were conducted in Spanish and translated to English.
When Alfonso Uribe was 2 years old, he started banging his head against a wall. Alarmed, his mother took him to a doctor. The doctor didn't speak Spanish, and Eulalia Uribe didn't speak English. There was no translator. The pediatrician told Uribe that nothing was wrong with her son. It would take another five years before Alfonso would finally be diagnosed with autism.
That's the kind of thing social worker Alberto Serpas sees every day.
There was the father who abandoned his family when he learned his 13-year-old daughter had autism, leaving his stay-at-home wife and two kids to fend for themselves. The wife was undocumented, with little education or money, and no car. Now she works a series of low-paying jobs at fast-food restaurants and supermarkets to put food on the table. She's been fired repeatedly because she often has to leave work early to take her daughter to therapy. When she's not working, she's on the phone with the state or her daughter's school, attempting to fight for services in a language she doesn't speak.
Yet another family didn't realize their son could go to school. He had severe autism — the ear-clutching, rocking-back-and-forth variety — but the family didn't know it. They just knew that he couldn't function outside the home. So they kept him inside. They had no health insurance, so he never got a referral to anyone who could offer a diagnosis. It would be many years before anyone who could help would even learn that the child existed.
There's a saying that if you've met one child with autism, you've met one child with autism. That's because autism isn't a clear-cut, easily identifiable disability — it's a spectrum disorder. Not all children will have the same symptoms, and those who do will exhibit them to different degrees.
The one trait that all children on the spectrum share is a difficulty communicating and interacting socially with others.
Coming to terms with a diagnosis of autism can be challenging for any family. There is no cure (the issue of whether autism is a "disorder" to be "cured" at all is extremely controversial). The best families can hope for their children is to provide them with intervention and therapy. The earlier, the better.
Learning how to navigate the bureaucratic world of disability services and special education in Arizona — the mountains of paperwork, referrals, insurance issues, doctor visits, and qualifying exams — is enough to drive a parent mad.
Now try navigating that bureaucracy in a foreign land, in a language that you don't understand, without the cultural knowledge it often takes to understand unfamiliar medical and educational systems, lacking health insurance — possibly even citizenship status — on a minimal income and with no car.
These are just a few of the common obstacles that lower-income, Spanish-speaking immigrant families face when attempting to care for children with autism, says Serpas, a social worker who volunteers with GALA, a Phoenix-based, Spanish-speaking support group for the families of children with autism.
"It's heartbreaking," he says. "And inspirational. These families love their children so much. They'll do anything to help them. But there are so many harsh obstacles. It's tremendously difficult."
A tiny woman with bright eyes and a brilliant smile, Eulalia Uribe sits daintily on the edge of a beige couch next to her husband, Alfonso, in their small Mesa apartment. In a room directly off the kitchen, three of their four children watch The Disney Channel and giggle.
Aelin, a shy girl with long black hair, sits apart in the corner, intently playing with a Bratz doll. She doesn't look up to see what the other children are laughing at, nor does she seem to care whether they play with her.
The Uribes say that is just how she is. Aelin has autism — as does her older brother, Alfonso. And although the Uribes noticed differences with both of them when they were quite small, Alfonso, the oldest (now 12), wasn't diagnosed until he was 7. Aelin was diagnosed a few months ago — at the age of 11.
Alfonso and Aelin Uribe are victims of a nearly silent perfect storm.
The United States is in the midst of an autism epidemic. Twenty years ago, only one child in 100,000 was diagnosed with autism. That number's jumped to one in 150, according to a 2007 study from the Centers for Disease Control.
Twenty years ago, the only exposure most people had to autism was through Dustin Hoffman's role in the movie Rain Main. Now, autism has broken into popular culture. Bill Gates, the richest man alive, has been informally diagnosed with it. Some online autism forums claim Vincent van Gogh and Leonardo da Vinci. There are bestselling memoirs and movies. Celebrity Jenny McCarthy, whose son was diagnosed with autism, debates the causes and treatments with doctors on primetime television.
But chances are you still won't be seeing a Lifetime special on a Latino family's struggle with the disability.
That's because despite the fact that Latinos make up the fastest-growing minority population in the United States, Latino children are half as likely to be identified and served in the education system as Anglo children, according to 2007 U.S. Department of Education statistics. And most are identified only after they're enrolled in school — long after the critical window for early intervention has closed.
It's a national problem. One California researcher who published a study in the 2002 Journal of Autism and Developmental Disorders actually thought Latinos might be less at risk for autism than other kids. Her data showed Latinos to be the least likely of any ethnic group to use Department of Developmental Services in the state of California. And then there's a 2004 CDC report (based on self-reporting from parents) that found autism rates for Latinos to be roughly half that of non-Latinos.
But as it turns out, Latinos aren't less at risk for autism at all. Most parents simply don't realize their children are autistic, so it often goes overlooked.
This story isn't necessarily about all Latinos — it's about lower-income Spanish-speaking immigrant parents of children with autism. These parents face a double whammy when it comes to communication. Because of their autism, the children often can't express their needs. Parents need to become their children's advocates and translators. But for parents unable to speak English or navigate the medical system, getting adequate help can seem next to impossible.
There's also the fear factor — in the past two years, Phoenix has been the target of immigration sweeps by the Maricopa County Sheriff's Office. Now, social workers report that many parents living in Arizona illegally are too scared to seek the services their citizen children so desperately require.
Then there are the cultural complications. According to Serpas, some families mistake autism for a mental disorder, which is often stigmatized. Many of the social workers, therapists, and doctors interviewed for this story note that fathers tend to have particular trouble accepting the diagnosis of their sons, who are four times more likely to have autism than daughters. Less-sensitive dads see their sons' disabilities as reflections upon themselves — some even abandon their families, experts say.
"When you have a child that is not what they consider to be 'normal' they get outcast by family members and society," says Dilcia Yanez, a social worker and GALA volunteer whose clients are all Spanish-speaking immigrants. "It comes from their culture. If you have someone with mental retardation, others might feel that the whole family is the same."
Because Phoenix is home to three Spanish-speaking support groups for the parents of children with autism — Grupo de Apoyo para Latinos con Autismo (GALA), Gane, and another through the Southwest Autism Research and Resource Center (SARRC) — the situation here has improved over the past seven years. But many families are still falling through the cracks.
"Incidence of autism is on the rise, and the Latino population is growing faster than any population in the United States," says Emily Iland, a California-based education consultant with a masters in special education focused on Latino issues in autism. She's also the author of the bilingual reference book Autism A to Z. "Yet they have half the chance of getting recognized as other children. It's a crisis."
And it's not letting up.
Celia Sanchez and her family live in Mesa. All three of her children have been diagnosed with autism. A friendly woman with a ready laugh, she's eager to talk about the progress they've made — especially her middle son, Pedro. As a baby, his symptoms were severe. He cried constantly and wouldn't allow himself to be picked up. He'd bang his head against a wall, refuse food, and rip at his clothes. Now he's a chatty boy of 14 who loves Pokémon cards and joking around. And he's so smart, she says.
But when she talks about her oldest daughter, Rosillo, 15, Celia's enthusiasm wanes. There's a long silence, and she sighs.
"Rosillo . . .," she says. "I should have seen it earlier."
Perhaps because Pedro's autism is much more severe than Rosillo's, he was diagnosed early, at the age of 2, and started receiving therapy almost immediately. Sanchez just assumed that Rosillo was quiet. And she was so busy with Pedro that it was easy to miss the milder symptoms in her daughter. But when Rosillo never learned to talk, Sanchez became worried.
Finally, Rosillo was diagnosed with autism at 7. Her doctors and teachers all missed it for years — and so did Sanchez. She was devastated. "I feel responsible," she says.
Daniel Kessler, a developmental pediatrician with the Arizona Child Studies Center at Saint Joseph's Hospital in Phoenix says that despite the growing number of autism cases, many pediatricians are missing autism in small children. When parents tell doctors about a child's unusual behavior, many pediatricians chalk it up to the parents' over-protectiveness.
"Pediatricians say a variety of things: 'Don't worry, he's a boy, we'll watch this and see how it goes; it's because he has three older sisters, and they always speak for him,'" says Kessler. "We hear this continuously from both English and Spanish-speaking families."
But there is a difference. For Anglo families eligible for Medicaid, it usually takes three or four doctor's visits to get a diagnosis for their children, according to a 2002 article in the Journal of the American Academy of Child and Adolescent Psychiatry.
For the Latino families studied, it took more than eight.
The tragic part is that many of these families do notice unusual behavior in their children when they are young — as early as 12 months, in some cases. These are behaviors that can't be mistaken for anything typical. Children who repeatedly beat their own heads against a wall, who scream inconsolably, clutching their eyes and ears because they are terrified of flies, loud noises, or light. They won't allow themselves to be held or touched by anyone but their parents. As they get older, some won't talk at all.
If these children had English-speaking parents, they'd be more likely to get early intervention. Such clear-cut symptoms shouldn't be falling through the cracks, but they are.
Kessler points his finger at the language barrier.
"In a primary-care office, you're already dealing with a fairly quick visit," says Kessler. "If there are language issues and you're not really communicating you might miss their concerns."
Even having a translator isn't a sure bet. Sanchez says that after years of fighting with Rosillo's school to get her daughter the services she desperately needs, she's attempting to learn English, in part, because she's had so many experiences with bad translators. Often, she complains, they don't repeat what she says. Sometimes translators drop the last sentence — other times they change it entirely.
And sometimes there aren't trained translators available at all. Doctors and parents are forced to communicate through one of the families' other children (imagine how your 7-year-old would explain complicated medical symptoms). Or they use the janitor, or the woman at the front desk.
For the latter, "Spanish might not even be their native language — usually they don't know all the scientific words," says Alberto Serpas, the social worker. "A lot gets lost in translation."
Then there's the insurance issue. About a third of Latino families in the United States don't have insurance. Many go to free clinics, and take their children to doctors only in emergencies. This is an even bigger problem in rural areas and border towns, where there may only be one or two doctors available.
Because these children don't have primary-care physicians, there isn't always someone parents can bring their concerns to — and many parents don't think they need to. Autism isn't like other disorders. Unlike Down syndrome, which results from chromosomal abnormalities, autism isn't correlated with distinctive physical characteristics. Many parents figure that it's just a phase their child will grow out of.
Even so, language issues — even combined with insurance problems — aren't enough to explain the gap. There's something else going on here.
Part of the barrier has to do with culture — and with class. Lower-income immigrant families aren't always fighting for their children. Some don't know that they should. Others simply don't know how.
Like the Uribes. Originally from the Mexican state of Hidalgo, the family moved to Phoenix in 1994. A petite, pleasant woman, Eulalia cleans houses. Her husband, Alfonso, a stocky man with neatly trimmed black hair and a goatee, is a day laborer.
As a baby, Alfonso — the Uribes' first child — seemed normal. A baby with big brown eyes, he seemed to enjoy being held and kissed by his parents. When he started talking and walking later than other children his age, his mother figured he was just a late bloomer.
When, at 2, her son began to repeatedly beat his head against the wall, the Uribes took him to the doctor immediately. Eulalia says that the doctor told her nothing was wrong with her son. There was no translator, so she wasn't able to clearly explain her concerns. Still, when the doctor said Alfonso was fine, she didn't question it.
Serpas says this happens a lot.
"Many of these parents are people with very humble backgrounds from rural areas," explains Serpas. "What the doctors or teachers say . . . [The parents] don't feel they are anyone to contradict them, so they don't always seek other sources of information."
And, of course, there's always denial. No parents expect their child to have autism, and some don't want to accept that there's something wrong with their kid. So when the doctor says a child is fine, many parents don't want to question them.
But they have to. Because there is no cure for autism, it's vital that families provide "intervention" — speech and occupational therapies — to their children as early as possible. Because young children's brains are still developing so rapidly, there's an ideal window in which to start therapy — between about 18 months and 5 years (though therapists prefer to start working with kids around 2), says Daniel Oppendum, vice president and clinical services director at the Southwest Autism Research and Resource Center.
With an average diagnosis made at 5 or 6, Spanish-speaking immigrant families are missing that window.
Even families lucky enough to get services run into roadblocks.
A sociable 5-year-old, Javier Acosta has mild autism that's combined with other developmental disabilities. Though he attempts to make eye contact and enjoys the company of others, he has trouble putting coherent sentences together and engaging others in play.
During a recent session, he and his speech therapist, Joanne McIntyre, sit on the faded blue carpet in a small, windowless white room full of toys — play ovens, Legos, a dollhouse, and a pirate ship. Javier instantly gravitates toward the pirate ship. Giggling, he reaches assertively for a gray-and-yellow pirate figurine held by his therapist.
"Say, 'Will you give me the pirate?'" she instructs patiently.
Javier babbles a string of words that don't make any sense. McIntyre listens intently, shakes her head then repeats herself slowly, gesturing at the figurine.
"Say, 'Will you give it to me?'"
"Da me lo!" says Javier, correctly responding to her request, but in Spanish. Not understanding, she repeats her request. And again. Finally, Javier says it in English.
From her perch on an indigo preschool-size chair in the corner of the room, his mother Thelma attempts to keep her 8-year old daughter entertained during Javier's therapy session. When Javier says "Da me lo," she laughs, delighted at her son's progress.
Acosta doesn't speak English. And McIntyre doesn't speak Spanish. Javier and his sister are the only ones who speak both languages. The fact that Javier and his therapist can communicate in English only won't necessarily affect his therapy — Javier understands English, so he's still benefiting.
McIntyre's inability to communicate with Javier's mother, Thelma Acosta, however, is a bigger problem. She can't ask Acosta about Javier's typical behavior, or about potential scheduling conflicts, or explain to her the techniques she's using with Javier and why. More importantly, she can't teach Acosta how to work with Javier at home. She has no idea whether or not Acosta even understands the techniques she's using during Javier's sessions.
Pretty much all communication between McIntyre and Acosta is filtered over the phone through Javier's bilingual third party. If McIntyre has notes or questions for Acosta, she'll tell the translator, who will eventually call Acosta. If Acosta has questions — though McIntyre says there haven't been any so far, which also concerns her — she'll do the same thing.
"I have no idea if the activities are being done at home," says McIntyre. "Working with some children — trying to make sure that they're understanding me — can be a real challenge."
As it is, there simply aren't enough speech therapists in the Valley to go around. Finding one who speaks Spanish is next to impossible, according to people in the community.
"I can count the number on one hand," says social worker Yanez.
Many therapists hesitate to work with families they can't talk with directly, Yanez says.
A few weeks ago, Yanez contacted a speech-therapy company on behalf of several of her clients. One of the therapists called the family but couldn't communicate with the mother. After only one phone call, she gave up.
"She called me back and requested that I only refer her to English-speaking parents," says Yanez.
So much of the progress of a child depends on how well their parents incorporate their treatments into everyday life. The language barrier makes things much more difficult.
But it's just as frustrating for therapists willing to work with such families.
Marti Baio, a speech therapist and the owner of Baio Enterprises Inc. — where Javier goes for treatment — says they do the best they can to work around the language barrier.
"Sometimes parents will bring translators," she says. "If they can't, we'll call a translator who will then talk directly to the parents."
Still, such a game of "telephone" is hardly optimal when it comes to working with autism.
Some therapists think that working with families is unethical if family and therapist don't speak the same language, McIntyre says. If a child's Spanish is delayed but his English is fine, then it's a language issue — not something that requires a therapist. And if both the child's primary and secondary languages are delayed?
"It's hard for children to progress beyond their primary language," says McIntyre. "And my Spanish vocabulary is so limited — I know Javier's sometimes speaking Spanish, but I can't always tell."
Most Latino children with autism are not identified until they go to school.
Under Arizona law, all children are required to go through a screening within the first 45 days of their beginning school. Teachers must fill out questionnaires that evaluate the behavior and development of each child.
It's an imperfect process. Teachers are still getting to know kids in the first few weeks of school and won't always catch the difference — at least not initially — between a child who is painfully shy and one on the autism spectrum.
Thanks to the recently passed budget, schools are expected to suffer staggering funding cuts. Neda Shafir, a spokeswoman with Roosevelt School District, says that many schools have been forced to reduce programs and staff.
"What's happening with the Legislature is nothing less than brutal," she says. "We're looking at significant funding cuts, which means that class sizes are going up and schools have to reduce services."
School districts with high volumes of illegal immigrants are hit even harder, because undocumented families often go unreported in the census — which means the schools might not get complete funding for those kids.
"Teachers are committed to giving kids the best education," says Shafir. "But when you have a classroom with 35 kids, you can't give attention to every child. We might be looking at a lot of teacher burnout."
The process is additionally complicated by language. Since the implementation of Proposition 203 in 2001, all second-language learners are required to take four hours of intensive English every day. All other classes are also taught in English. Teachers sometimes have trouble telling whether a child's speech delay is simply because they're a second-language learner or due to a disability.
A study conducted in California by autism expert Emily Iland found that of the 108 Spanish-speaking mothers of children with autism surveyed, 44 percent reported that the teacher or staff at school thought their children's problems were caused because they were an English-language learner, or because they spoke Spanish at home.
Teachers do their best to identify kids. Even so, not all children are getting the services they need. It took Celia Sanchez nearly a year and a half to get her daughter's school to provide special education services to Rosillo.
She had a doctor's diagnosis, but the school wouldn't recognize it. Even after she resubmitted her daughter's medical records — including a diagnosis of autism from a licensed doctor — the school kept Rosillo in normal classes. Rosillo's doctor had to threaten to take the school to court for challenging his diagnosis before they'd finally give Sanchez's daughter the services she was entitled to. By then, Rosillo had already lost more than a year of school.
Joanne Phillips, the former director of special education for the state Department of Education, says Rosillo's the exception. Now a private education consultant and owner of the company CADRE, which helps train schools and teachers to identify and work with children with special needs, Phillips says that most children do eventually get identified and served in schools. But she acknowledges that the process is far more challenging for the children of monolingual, Spanish-speaking parents.
Phillips says that anyone trained to look for autism should be able to easily identify the children who have it, regardless of their linguistic and cultural background.
"When I meet the children, it's the autism that shines through. It transcends culture," she says.
To a trained eye, she says, there are certain telltale universal signs. For example, children with autism will often look at a person's mouth rather than their eyes, because that's where the sound is coming from.
Or she looks to see if children follow "joint attention." If the child is walking down the street, and a stranger suddenly looks up, will the child look up, too? Such behaviors are universal to typical human behavior, but not to people with autism.
The big problem, according to Phillips, is that teachers and staff at schools aren't being adequately trained to identify kids. In some schools, funding cuts are so severe that much-needed staff vacancies have been open for months — jobs like special education teachers, psychologists, etc.
"School districts need training and staff," she says. "They don't know how to work with kids with autism, and they don't know how to evaluate the skills of the children to know where to intervene."
Even more concerning are the children who never make it into the classroom.
"Sometimes if the child has a disability, the family will view it as an embarrassment, so they don't bring the child out," says Phillips.
In such cases, the child may never be identified. Phillips knows it happens, because such children have been found, by chance, on her watch. Schools have conducted home visits to another child in the family only to discover a sibling who was not enrolled in school.
This has been improving as the community has become more educated, she says. But with recent immigration sweeps, Phillips fears that the situation may be getting worse again.
"I would say with the anti-immigrant activities, it's probably getting more common than what it's been in the past," she says. "The pendulum may be swinging back."
Getting diagnosed is just the beginning.
Sandra Catalan first noticed problems with her third child, Leonardo, when he was about 10 months old. A beautiful, chubby baby with soft, downy hair and long black lashes, he didn't like to be held or touched — not even by his parents. He'd cry and throw tantrums when she tried to kiss him.
Catalan remembers those days with a shudder.
"There was nothing I could do to help him. I felt so helpless," she says.
Still, she tried. Catalan lost track of the number of doctor visits before Leonardo was finally diagnosed with autism. She guesses they must have gone at least 10 times.
"Every time we went to the doctor for a routine visit, I'd tell them that there was something wrong with my child," she says. "They never listened."
When Leonardo was finally diagnosed at 4, she was relieved. Finally, her son could get help. From here, she figured things would just get easier.
She was wrong.
Few families — even those in the middle-class income bracket — can afford to pay for therapy out of pocket. The price tag for speech and occupational therapies alone can run well above $50,000 per year. For Catalan, whose day job was cleaning office buildings in downtown Phoenix, it was out of the question.
For lower-income families with children with disabilities, there's AHCCCS, a state program that administers Medicaid, designed to pay for all the services required by a child with special needs.
The maximum salary a family can make in order to qualify is $1,200 per month. The first time she applied, Catalan was denied — her income was too high by $5. So she got her company to dock her hours for two months. The next time she applied, she qualified.
Language barriers can impede the application process, which also requires a child to pass a screening.
Steve Meissner, public information officer for the state Department of Economic Security, which runs the Division of Developmental Disorders, says that all screeners sent to test Spanish-speaking children either speak the language or bring a translator.
But some of the families interviewed for this story had different experiences. Several say that the screeners didn't speak their language — a big problem when part of the screening tests speech delay.
Some of the mothers reported that they were unable to communicate with the tester at all. For one family, it took several screenings before their child would finally qualify.
Nor does the DDD always do a good job of walking families through the process of finding the services they need once the families finally qualify to get them.
Catalan's first visit to DDD was overwhelming. She says they told her how many hours of music, occupational, and speech therapy her son qualified for and gave her a thick packet of papers with the contact numbers for local companies that provided therapy. No one walked her through the steps.
They also told her not to hope for too much: Leo, they said, would never go to the bathroom on his own. He would never play with toys, hold a fork, or dress himself. He would probably never talk. He would never hug her, never want to be touched or kissed.
Catalan refused to believe them — she says she clung to the hope that one day her son would let her hold him. That one day, he might even hug her back.
Armed with the list of therapy providers and not much else, Catalan estimated that she initially called close to 20 programs. Many of the companies didn't even have Spanish-speaking receptionists; sometimes they'd hang up on her. Even fewer had Spanish-speaking therapists. The few that did had waiting lists of as many as 100 children.
Several weeks and dozens of calls into the process, Catalan remembers walking through one of the office buildings she works in, making sure the lights were turned off and everything was clean. She began to cry. She couldn't stop.
"I felt desperate," she says. "I didn't know where to go. I didn't know how to start. I didn't know what to do."
She persisted — all while working full time and taking care of her husband and four other children. In what little free time she had, she took English classes, hoping to acquire enough of the language to persuade English-speaking therapists to take on her son. At the worst of it, she was sleeping two to three hours a night.
And — at least for the first four months after Leonardo was diagnosed — she did it all alone, without the support of her husband.
"At first he didn't want to believe it," she says. "My husband didn't think anything was wrong with Leo. He said I was crazy."
Dilcia Yanez, a social worker affiliated with the support group GALA, says that she sees that sort of thing a lot: Lots of more traditional dads have trouble coming to grips with their children's diagnosis.
"There are fathers who abandon their families — it's part of their macho," says Yanez. "When a father realizes that their child is not typical they struggle with it to the point that they can't cope. They leave the home."
Others blame their wives for being unable to control the child. The situation is improving with education, says Yanez, adding that now most fathers do stick around.
Even so, many of the therapists, doctors, and social workers interviewed for this story still find that immigrant fathers are rarely as involved as mothers in their child's treatment (this is often true of most fathers as well).
"I let them know that I really recognize that they are so involved and that it is so important for their child," says Yanez. "Running away is not going to make their child better."
After several months, Catalan's husband finally did accept his son's diagnosis, and began to support his wife's efforts to get Leo therapy. He even went to educational seminars to learn more about his son's diagnosis. Still he rarely attends therapist appointments — partly because of his work schedule — and generally leaves interacting with the therapists to his wife.
Things eventually got better. Catalan found Jump Start — a bilingual program offered though SARRC to teach parents of newly diagnosed children how to work with their kids. Through SARRC, she was also able to get habilitative services — therapists who come to the home an hour per week to help autistic children meet self-help goals.
The first year of therapy was the hardest, she says. Despite all that she had done to fight for therapy for her son, he wasn't improving. She did all the exercises taught to her by SARRC at home religiously, but nothing seemed to reach him.
"It was like he was closed up in a box," she says. "He didn't want to learn. It was so difficult."
She cried a lot. Then — after nearly a year of therapy — Leo had a breakthrough. One day, he began to play with a variety of toys in a therapy session. He responded to people. It was as though someone had flipped on a switch, and suddenly he wanted to learn.
Now a lively 7-year-old, Leo has proved many of DDD's initial predictions wrong. He can go to the bathroom on his own, dress himself, and play with toys. He's even learning to prepare his favorite foods. Although he still can't talk on his own, he communicates quite well through a speech device — a computer that talks for him. And he hugs and kisses his parents.
"That first day I cried," says Catalan. "I just thanked God because finally my child is starting to discover the world."
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