Children who were exposed to complications shortly before or during birth, including birth asphyxia and preeclampsia, were more likely to develop autism spectrum disorder, says a Kaiser Permanente study published Feb. 1 in the American Journal of Perinatology.
For the study, researchers examined the electronic health records of 594,638 children born in Kaiser Permanente hospitals in Southern California between 1991 and 2009. During this time, 6,255 of these children were diagnosed with ASD, 37 percent of whom had experienced perinatal complications.
Researchers found that children exposed to complications during birth were at a 10 percent increased risk of developing ASD, according to a Kaiser Permanente statement.
That number rose to a 22 percent increased risk of developing ASD for children exposed to complications before labor began. The study also showed that children exposed to complications both before and during birth had a 44 percent greater risk of developing ASD than children who did not experience perinatal complications.
“Our study suggests that children exposed to certain perinatal complications, especially birth asphyxia and preeclampsia, were more likely to be diagnosed with ASD than those who were not exposed, even after adjusting for factors such as gestational age at birth and a mother’s age, race and education,” said the study’s lead author, Dr. Darios Getahun of the Kaiser Permanente Southern California Department of Research & Evaluation.
“While there currently is no cure for ASD, early identification of children who may be at risk of developing the disorder is extremely important, as research shows that early intervention treatment services for children with ASD can greatly improve their development.”
According to the study findings, the perinatal complications that had the highest association with ASD were birth asphyxia — deprivation of oxygen during the birthing process — and preeclampsia, a pregnancy complication characterized by high blood pressure and signs of damage to other organ systems.
Other perinatal complications that were associated with ASD included premature separation of the placenta from the uterus, breech/transverse fetal presentation, fetal dystocia/abnormal size or position, and a prolapsed/exposed umbilical cord, according to Kaiser.
In a wheelchair, only able to control his eyes, mouth, and fingers, Ruben Martinez felt alone and misunderstood for most of his life. In desperation, he would day after day lock himself in his bedroom.
“You cant give up, you have to move forward,” Ruben’s mother Antonia Perez would tell her son.
Lea este artículo en Español: Jóvenes con Necesidades Especiales Conviven en Bell Gardens
Now 32-years-old, Ruben has come out of his shell, Perez says proudly, crediting a Bell Gardens program she helped create for his turn-around.
He used to be so shy and embarrassed he could not even order a meal at McDonalds, now he is working on his master’s degree, she told EGP Friday.
Perez said she did not want her son’s muscular dystrophy to define him, recalling how she made it a point to try and instill in him that he was not less than anyone else just because he suffered from a muscle disease that hindered his movement and weakened his musculoskeletal system.
But he needed more, she said.
The city offered recreational youth programs like soccer and football, but none specifically catered to children with special needs, the Bell Gardens residents said.
“It was like nobody cared about our children,” Perez said in Spanish, telling EGP that’s when she started advocating for Bell Gardens’ special needs community, eventually convincing the city council to support creation of a program for children with disabilities.
It’s been 20 years and the Special Time for Adaptive Recreation (STAR) program is still serving special needs children, teen and adults by giving them a place where they can take part in activities in an environment that encourages acceptance.
“Their condition shouldn’t matter, everyone should just see them as people,” Perez told EGP Friday during the group’s weekly program.
STAR is handled like any other program offered by the city’s recreation department, explains Program Coordinator Sandra Leyva. The city uses the same staff that works on other park programs, but while no special training is required, everyone working with STAR is handpicked, according to Leyva.
There are currently about 17 or so special needs youth in the program, ranging from 9- to 32-year of age; Ruben is the oldest participant.
“It’s a unique program because it gives participants space to be themselves, they make friends and they learn to interact and socialize,” says Leyva.
“It has also serves as a support group for parents and participants,” she added.
Ruben witnessed that first hand, watching his mother take advantage of the opportunity to relax and unwind while he learned to relate to others and improve his self esteem.
“I feel like a mentor now,” Ruben told EGP, lightly holding the knob that controls his power wheelchair. “I feel like an inspiration for the younger kids to look up to.”
Like Ruben, 21-year-old Juan Torres also suffers from muscular dystrophy and by age 10 could no longer walk.
“I learned I’m not the only one with this condition,” said Juan as he looks around at the friends he has made since joining STAR. “I thought that for a very long time,” he said Friday, no longer believing his life revolves around his condition.
Last Friday, his focus was on playing Bingo. Sitting next to him was 12-year-old Antonio Franco, paying close attention to the numbers on the card in front of him.
“Bingo!” Antonio suddenly yelled excitedly.
“I love coming here,” he said, I’ve been coming since I was a little 1-year-old,” Antonio said as he put on the red Chivas hat he claimed as his prize.
“I made friends … I like this place … I like the people!”
Sitting next to her son, making sure he did not miss a number, Antonio’s mother Maria Mireles said the STAR program has helped her deal with raising a son with cerebral palsy, a permanent movement disorders that causes difficulty with sensation, vision, hearing, swallowing and speaking.
“Our children come together while we parents come to share” our experience, she said in Spanish, explaining the dual benefits of the program.
Nearby, some of the parents huddled together to give each other support and advice on raising a child with challenges other children may not have.
“We laugh, we cry, it’s like therapy because we’re all in the same boat,” says Angelica Cardenas, whose son has spinal bifida, a birth defect that prevents the child’s spinal cord from developing properly.
“The truth is we don’t know anything when we become mothers, but we have learned from each other,” she said.
Cardenas said she learned about the STAR program when her son was only a couple of months old and in the hospital. She recalled seeing a young girl with special needs who looked lonely and sad, and telling herself she never wanted her son to feel that way.
“Even though he was still very young, I wanted to learn from the moms and I wanted my son to be around children with different levels so he could see he can be different surrounded by others.”
Even though Fredy Sanchez was born with Down syndrome, a genetic disorder that causes developmental and intellectual delays, his mother Josefina Blancas and her husband Epifanio Sanchez treated him like any other boy growing up.
“He plays basketball in Montebello, baseball in Downey and dances in Plaza Mexico,” his proud mother boasted as Fredy, 25, colored nearby.
The mothers help guide each other through the school system, ensuring their children receive the services they deserve. They share their experiences with programs like Make-a-Wish and The Starlight Foundation that provide special experiences for chronically ill children.
Most importantly, the group has become a second family.
“Our kids learn to love themselves, there is no discrimination, no bullying,” Cardenas said.
“There is a friendship, they invite each other to birthdays and learn to miss each other.”
The mother of a son with severe autism, who is non-verbal, told EGP he somehow knows Friday is a special day.
“As soon he sees us driving past a particular street, he gets emotional and excited,” she confided.
Some kids may at first feel out of their element, not knowing anyone, but that changes and most find STAR has had a lasting impact on their lives.
To outsiders, 15-year-old Jason Cruz looks like a typical teen, wearing punk rock t-shirt and a vest covered in pins and patches. Before joining STAR, Jason’s autism kept him from interacting with people. Now he plays upright bass and is in a psychobilly band.
“I got to meet new people,” Jason said Friday. “[STAR] helped me be the person I am today.”
Jocelyn Camacho also has autism. During a special Christmas program last year, dressed as Mrs. Claus and singing a song she wrote herself, the 14-year-old perfectly summed up why everyone likes the “very special program with very nice people.”
“They love me… they see I’m beautiful inside and out,” sang Camacho. “And I don’t even wear makeup.”
The STAR program meets every Friday from 4:30-6:30p.m at Bell Gardens Veterans Park. For more information, call (562) 334-1779.
Three years ago when EGP first interviewed Josefina Nieves, she was overwhelmed with worry about what would become of her autistic son who was about to graduate from high school.
Today, Nestor, 21, is in his third year at Cal State University, Northridge and wants to become an occupational therapist, she says proudly.
Getting him to this point took a lot of work, said Nieves, who now helps other Latino parents find tools and resources to help their children with autism.
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As a parent coordinator with the Lincoln Heights based nonprofit Fiesta Educativa—a group that educates parents about autism, their rights and resources—Nieves conducts educational workshops for other parents who may be in a similar situation. She is especially interested in speaking to Latino parents who often have more difficulty because information available in Spanish is more limited.
“It is very important for Latinos to know about autism,” she told EGP Monday at the El Sereno Public Library where she was scheduled to lead a workshop for Spanish speaking parents.
The session was sponsored by the Los Angeles Public Library, which collaborated with nonprofit groups like Fiesta Educativa to provide autism education in April to coincide with Autism Awareness Month.
Autism is a neurological disorder that causes problems in social communication, lack of language and interest in common things and behavioral challenges such as not being able to control emotional outbreaks. The autism spectrum goes from low to severe and is four times more common among boys than girls.
In the U.S., one on fifty children have been diagnosed with autism, according to the U.S. Center for Disease Control and Prevention. Today, about one million people, from all ethnic and social economic backgrounds, are living with autism.
According to Nieves, not speaking English and cultural differences often make it harder for Latino parents to understand the disorder. For example, they may think an autistic child’s tantrum can be cured with a “spanking,” she explained.
Many Spanish-speakers do not know where to turn for help, she said. Those barriers can keep them from getting help even when it is available.
That point hit home Monday, when Veronica Jacobo was the only person to show up for the library’s free workshop.
According to Jocobo, her “mother’s instinct” told her something was wrong with her now 10-year old son.
“Around age three I noticed he was afraid of touching the sand in the park,” she said. “And one day at the beach, he didn’t even want to get out of the car” because he “was afraid of the sound of the waves,” she explained, during what turned out to be a one-on-one counseling session with Nieves.
Jacobo said she started looking for help at her son’s school and outside organizations as soon as he was diagnosed with autism. It’s been difficult, but little by little, she found help.
Her son, now in the fifth grade, has an aid who’s with him one-on-one at all times in school. But there are still many challenges, said the mother of two, explaining why she wanted to attend the library’s workshop.
Presentations at Stevenson’s Public Library in East Los Angeles and in Panorama City drew more parents, but one is better than none, Nieves said Monday, focusing her attention on Jacobo.
Struggling at times to hold back tears, Jacobo explained the problems she’s faced trying to help her son, who sat nearby playing with an IPad.
She’s attended other parenting workshops, she said, but felt all the materials they gave her to read wasn’t really helping. So “I quit after a while,” she said.
Nieves took Jacobo through the Spanish language Power Point presentation she brought with her to the workshop, explaining along the way the importance of knowing more than those assigned to help parents at places like schools and local regional centers.
“Sometimes you have to explain many times what you need and why,” Nieves told Jacobo in English, the language she felt more comfortable with.
She explained that knowing what your child is entitled to will help you get the services from the school district or one of California’s 21 Regional Centers, private, non-profit organizations under contract to the California Developmental Services (DDS) that coordinate services to people with developmental disabilities such as autism. The Eastern Los Angeles Regional Center (ELARC) provides services to families in the greater East Los Angeles area.
The regional centers can help in many areas, including with basic like skills most people take for granted, she said.
“…They teach them to drive, to use money and do their chores” among other things, Nieves told Jacobo. “If the patient needs it, it is a program for life,” she added.
Funding for many of the free programs has been cut back so parents have to fight for them on behalf of their special needs child, Nieves said. Getting educated is vital, she emphasized.
Nieves recommends parents join organizations such as Fiesta Educativa, which offers a variety of programs. For example, at the group’s Community Parent Resource Center (CPRC) parents can get information about their child’s diagnosis and the school systems’ IEP, (Individual Education Program), as well as moral support.
They hold a Fiesta Familiar (Family Party” five times a month at the home of a volunteer family, where members can share food and a good time with other parents like them.
Regional Centers also offer a 16-hour Autism Parent Education Program (APEP) where parents can learn more about autism and what services are appropriate for their child. It has to be requested through a service coordinator.
There is no cure for autism and there is no medicine to prevent or stop it. Most experts agree that early detection and intervention can make a big difference in how the child does in school and throughout life.
The right diagnosis with the right resources are critical, emphasizes Nieves, who knows first hand that autism varies in severity from child to child, because her second child, Daniel, 19, also has autism. “His case is more severe,” she said.
Daniel will not be able to do many things on his own. For that reason, she continues searching for information and resources to help both sons as much as she can.
“I see my oldest son having a normal life, getting married and having kids,” but that’s not going to be the case for his younger brother, she said.
Jacobo says some things are getting better now that her son is older. She says she argues less with him, but daily routines such as taking a shower or putting away his stuff are a constant struggle: Sometimes I just have to ignore him.
“I try not to stress too much,” she said. “
He listens more and “I’m even thinking on enrolling him in a regular middle school,” she said, hoping to one day give him a “normal life.”