Hope for some, hard choices for others as families learn to cope
with disorder
Rachel Holt is a lot like other 8-year-old girls. On one weekday
evening, wearing her light brown hair in long braids down the sides
of her face, she and her younger sister Serena squealed together as
they chased each other around the family home. Once in a while she
stopped to sit on the couch with her mother, offering hugs and a
kiss.
Hope for some, hard choices for others as families learn to cope with disorder
Rachel Holt is a lot like other 8-year-old girls. On one weekday evening, wearing her light brown hair in long braids down the sides of her face, she and her younger sister Serena squealed together as they chased each other around the family home. Once in a while she stopped to sit on the couch with her mother, offering hugs and a kiss.
Rachel can be on the bossy side and when she plays “school” with her sister or friends, she always has to be the teacher. On the evening in question, she set out paper towels on the kitchen table in front of each seat with just the same number of animal cookies. She likes things to be just so.
But Rachel’s parents, Duane and Penny Holt, realized early in her young life that their daughter wasn’t exactly like other children.
“When she was younger, she didn’t want to be loved,” said her mother, Penny. “She was so colicky I couldn’t go back to work. When I’d hold her, she would push away.”
Like 1 in 166 children in the nation, Rachel has an autism spectrum disorder.
Though Rachel knew some words by 18 months, she started to lose some of her language skills as she got older. She wouldn’t respond when her parents talked to her. At first, doctors told Duane and Penny their daughter might have a hearing loss or speech delays.
Like many families whose children are eventually diagnosed with autism, the family had heard about the disorder but didn’t know the specifics. They’d even bought their Hollister home from a family with an autistic child.
But they never considered the diagnosis for their own child “even though we knew something was wrong,” Duane said.
“But when you get that [diagnosis] it hits you like a ton of bricks,” Duane said.
At the doctor’s office while Penny broke down in sobs, Duane tried to hold it together.
“It hit me all at once and I got up crying in the middle of the night,” Duane said, “Because I realized my baby was never going to be normal.”
As the doctor informed them their daughter was severely autistic, they wondered if their brown-haired toddler would learn to talk, live a normal life or get married some day.
At 8, Rachel’s diagnosis has altered over the years and she is now considered to have high-functioning autism. She is in a mainstream classroom with the help of an aide and plenty of outside help from her parents after school.
Those with high-functioning autism can often lead a normal life, but they struggle with learning and socializing in ways that come as second nature to most people.
“She had to be taught how to go up and make friends,” Penny said. “She wouldn’t join in on the playground. She just watched the other kids.”
Recently, Rachel joined others in a game of jump rope at school and her parents celebrated it as a triumph.
For parents such as the Holts whose children have been diagnosed with autism, there are few guidelines for what the future will hold. Little is understood about autism or what causes it, according to the National Center on Birth Defects and Developmental Disabilities.
The most recent studies suggest that there is a combination of genetic and environmental factors that influence the development of the disease. For many years parents have pointed to Measles-Mumps-Rubella vaccinations as a trigger for autism, though the only published study of the correlation included case histories of only 12 children. The study has since been discredited, according to the Centers for Disease Control and Prevention. More research, and better research is still needed to more closely pinpoint a cause.
Early intervention
There is no cure for autism, but doctors, parents and educators are still toying with many options as treatment. The key component quoted by experts and parents is early intervention.
Victoria Coronado, of Hollister, is always looking for new ideas of how to help her son Nathan, 4, who was diagnosed with high-functioning autism less than a year ago. Nathan has a cherubic face with dark eyes surrounded by thick black eyelashes and dark hair. His smile can light up a room, but when he concentrates on something, such as his favorite toy train, his face turns serious.
Recently, Victoria cut gluten and casein out of his diet – common ingredients in wheat, rye, oats, barley and dairy products.
“I’m not just doing it for his behavior,” Victoria said. “He had a lot of stomach problems and we thought it might be due to social stuff.”
She learned about the diet from another mother at the Autism Parents Club of San Benito County, a support group for families with autistic children.
Since the change, “he’s been better,” she said.
For Victoria and Nathan’s father, Gary Lemmerman, the diagnosis came as a shock. Like the Holts, they at first thought their son might have a hearing loss.
“We took him to get his ears checked and he wouldn’t respond,” Victoria said.
Eventually they were referred to a development specialist. After 10 minutes with the specialist at Kaiser Permanente, the parents were told their son was autistic. The initial appointment left them with few answers and many questions.
“No one wants a disabled child,” Victoria said. “I’m a single parent and I didn’t want life to get harder.”
Like Rachel, Nathan’s doctors and teachers are optimistic about his future. Early intervention is important to getting autistic children to reach their full potential. Nathan speaks now, and his speech will likely improve. He will be potty trained and he will be able to go to regular classes as he gets older.
Struggling to socialize
“His delays will be social,” his mother said. “He’ll be like one of those Silicon Valley geeks. He’ll get married, but he’ll be the type who doesn’t want to go to the company Christmas party.”
For now, work with Nathan revolves around socializing and speech. If given a choice, he would sit alone and play quietly with his toys.
“He will sit forever and play with his trains or dinosaurs,” Victoria said. “But it’s not good for his little mind.”
She makes an effort to engage Nathan all the time, even when doing household chores such as folding clothes. He struggles with following directions and needs supervision to keep him from hurting himself.
“He has sensory issues,” Victoria said. “He doesn’t have fear and has a high tolerance for pain.”
Unlike some autistic children, Nathan is very affectionate and always has been.
“His strength is he’s cute and lovable,” Victoria said.
The Holts also see strength in their daughter Rachel despite the challenges that lie ahead. When she is excited, they see a light in her as she flaps her arms and stands on her tiptoes, some of the early behaviors that tipped them off that she didn’t respond to the world in quite the same way as other children.
“She’s filled with wonder at everything in this world,” Duane Holt said. “Her radiance – There is a picture of her at the beach staring at a wave and she’s just so at awe with it.”
Other parents of autistic children face different challenges.
“I talk to one mom a lot and when I talk to her I feel really lucky,” Victoria said. “It’s hard talking to some parents because Nathan is so functional. I feel guilty, I guess.”
A home away from home
Marcella Harris is one local parent who had to make the difficult decision to put her son Thomas Teeters in a residential program for autistic children in San Jose. Thomas lives at a home with half a dozen other autistic boys and attends classes. His parents pick him up for weekend visits from time to time.
Harris and her husband first noticed Thomas was different than other children when he started preschool.
“He was about 3 and we had him in daycare with younger and older children,” Harris said. “We noticed that the younger children had started to surpass him. Before that he had always met his childhood goals.”
Doctors asked the parents if their son walked on his tiptoes or walked around in circles, some typical behaviors of autistic children. The parents had never seen any of those behaviors, though Harris’ husband figured out the doctor had been hinting at autism in a roundabout way.
“The doctors said nothing was wrong,” Harris said.
Thomas’ large vocabulary was one of the things that made it hard to diagnose him. Many autistic children have delayed speech or loss of language skills, but not Thomas.
“My son did talk. He used verbal skills,” Harris said. “He had a really large vocabulary, but he only had nouns.”
Thomas could say he wanted juice, but if someone asked if he was happy or sad, he couldn’t answer.
“Why, what, where questions – he had trouble with those,” Harris said.
It is rare for Thomas to volunteer information or start up a conversation on his own, and most of what he says are things he’s heard from other people. Like some people with autism, Thomas practices echolalia, which means he memorizes what he hears from other people and then repeats it later.
One day when he was visiting home for the weekend, a family friend brought over some puppies and Thomas surprised everyone by saying “Looks like kitties.”
As Thomas got older, his tantrums continued and started to get worse. The boy would bang his head against the wall and his parents couldn’t control him with methods they had learned when he was younger. Harris stopped working so she could spend more time with him, but his behavior worsened.
“No one [family or friends] said we should put him in a home, but doctors started saying we should think about it,” Harris said. “It was a last resort, but it was the right decision.”
Since entering the home a year and a half ago, Thomas’ self-abusing behaviors, such as banging his head against walls, are less frequent. He still has tantrums sometimes and some of his autistic traits, such as keeping to a routine, have increased, according to Harris. But overall she said Thomas has improved.
“He’s always happy to see us. We can take him home whenever we want,” Harris said. “We liken it to being a college student. He likes to come home to visit, but he likes to go back to school.”
For Thomas, the key things he needs help with are patience and his behavior.
“It’s most important to get along with other people,” Harris said. “I want him to be a benefit to society. I’ve always prayed for that.”
Melissa Flores can be reached at [email protected].
Next week: Schooling for autistic children and the evolution of a parents club
Red Flags
The following red flags may indicate a child is at risk for atypical development, and is in need of an immediate evaluation. If your baby shows any of these signs, please ask your pediatrician or family practitioner for an immediate evaluation:
– No big smiles or other warm, joyful expressions by six months or thereafter
– No back-and-forth sharing of sounds, smiles, or other facial expressions by nine months or thereafter
– No babbling by 12 months
– No back-and-forth gestures, such as pointing, showing, reaching, or waving by 12 months
– No words by 16 months
– No two-word meaningful phrases (without imitating or repeating) by 24 months
– Any loss of speech or babbling or social skills at any age
Red Flags were compiled from the following sources: Greenspan, S.I. (1999) Building Healthy Minds, Perseus Books; Filipek, P.A. et al. Practice parameter: Screening and Diagnosis of autism. Neurology 2000, 55: 468-79.
Hallmark Developmental Milestones and Red Flags are reprinted with permission by First Signs, Inc. ©2001-2006 First Signs, Inc. All rights reserved. For more information, please go to www.firstsigns.org or to the newly released book, Could It Be Autism? A Parent’s Guide to the First Signs and Next Steps (Broadway Books), by First Signs founder and president, Nancy D. Wiseman. First Signs is dedicated to the early identification and intervention of children with developmental delays and disorders.
