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.

Speech therapist Joanne McIntyre works with 5-year-old Javier Acosta while his mother, Thelma, looks on.
Michael Ratcliff
Speech therapist Joanne McIntyre works with 5-year-old Javier Acosta while his mother, Thelma, looks on.
Thelma Acosta and her two children, 8-year-old Jessica and 5-year-old Javier.
Michael Ratcliff
Thelma Acosta and her two children, 8-year-old Jessica and 5-year-old Javier.

Details

Phoenix Groups
Grupo de Apoyo para Latinos con Autismo (GALA)
A Spanish-language support group for the parents of children with autism.
http://arizonagala.org/.
Southwest Autism Research and Resource Center (SARRC)
SARRC has many resources for Spanish-speaking parents.
www.autismcenter.org/
National Groups
Autism Speaks
A national autism advocacy and research organization: www.autismspeaks.org
Autism Society of America
Provides information, education, supports research, programs and services for the autism community. www.autism-society.org
For a complete list of resources about autism (in English and Spanish), visit: resources link.

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.

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10 comments
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karla
karla

I'm %100 sure, that whoever wrote those harsh comments have never experienced to have a son with Autism, it breaks your heart every minute every day & night! so pls everybody show some sympathy to Autistic children! dont be so harsh! it doesnt matter if illegal or citizens!

Stephanie
Stephanie

I can certainly empathize with these families and their children, however, it seems to me that a lot of their plight would be easily solved if they would bother to learn the friggin' language of the country they've decided to take up residency in. I have no qualms with immigration (I'm a first generation citizen myself) but what does bother me are the people that live here and choose not to learn the language and yet they expect to be catered to based on their laziness and unwillingness to learn. I'm a little tired of pressing one for English...

Bob
Bob

Awesome article! Kudos to Malia! The families that have these challenges deserve everyones support. I have worked with children with autism and they are great kids!

Good work!

Scott
Scott

Autism is a horrible disorder and I empathize with the victims and families. That's why I propose that the illegals be given opportunity to sign a release of medical records form before they are promptly deported, thus facilitating continuity of care. The healthcare provider listed on the form can then fax those records to Mexico's Health Dept. This is an appropriate level of care for anything less than a life-threatening emergency.

Leyla
Leyla

if they are here and legal, almost all dr's offices have a spanish speaking person there to translate. you will get help and yes sometimes it will take time.

as for undocumented and illegal immigrants....you come here expecting the world handed to you and get surprised when you actually have to ask for it in english....

doesn't charity start at home? why are there still thousands of AMERICANS who can't afford health care and we are all expected to feel bad when non americans don't get it?

J
J

Wow! I'm guessing these are the people that also call themselves Christians? What happened to love thy neighbor as thyself? Glad to hear how much hate there still is out there

Jeff
Jeff

How heart-breaking that illegal aliens don't get the finest of health-care here for their children. I'm sure they would prefer Mexico's social services better. Send them home for treatment.

Hank Hill
Hank Hill

Hey moron, can you effin read? The story is about how the undocumented AND United States born Americans who happen to be Hispanic/Latino/Spanish speaking aren't getting diagnosed with or treated for autism. So who exactly is getting catered to? Idiot. Do everyone - especially the gene pool - a favor and chug some Jack Daniels then go to sleep in some snow; please.

Lynda
Lynda

and again, we are catering to illegals. I understand their predicament and autism is a terrible thing, but we have children here in our own country who are american citizens and can't get help. Let the illegals go back where they came from and seek the help from THEIR government...stop coming into our country and expecting us to bow down to you...learn to speak the language, learn to work and pay taxes, become a U.S. citizen...otherwise go to your own country and ask them for help..

 
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