Story URL: http://news.medill.northwestern.edu/chicago/news.aspx?id=224344
Story Retrieval Date: 12/20/2014 10:33:17 AM CST
Courtesy of Meredith Johnson-Lambert.
It started like any other day. On July 25, 2010, 44-year-old Tony Lambert left his Dundee home for his job in a local hospital. His 6-year-old daughter Regan rode quietly in the backseat. But unlike any other day, the right side of Tony Lambert’s body began to go numb that morning.
For Lambert, and anyone else in the medical field, this could really only mean one thing: He was having a stroke. Lambert could have pulled over and called 911. He could have turned his car toward one of the two hospitals he regularly passed on his way to work.
He could have even called his wife, Meredith Johnson-Lambert, who also works in the medical field, and ask her to phone for help. But at the time, none of these options seemed viable for Lambert with 6-year-old Regan in the car. So he kept driving despite the risk.
“He drove 22 miles with one hand and one foot. He almost made it back home.” Johnson-Lambert said. “Even in the middle of a health crisis, the first thing that comes to mind is ‘I have a child with autism. Are they going to be okay?’”
Lambert did indeed have a stroke and finally pulled over only a mile from home, when his wife reached him by cell phone after several tries and contacted 911.
When her husband’s speech began to improve during his recovery, Johnson-Lambert asked him about that day.
“He said ‘I couldn’t stop. I couldn’t talk. I didn’t know if she was going to be okay, so I just kept driving,’” she said.
And even though his choices may seem strange to some, Meredith said they made sense to her then and they still make sense now.
“It’s an overwhelming responsibility. You just can’t think like most parents do.”
Nine years ago, Johnson-Lambert had a cesarean section to give birth to the couple’s first and only child Regan. Regan reached most of the typical milestones growing up. She was walking at the right time. She cooed and pointed when she was supposed to. A particularly bright child, she was reading by the age of two. But Johnson-Lambert said she had a gut feeling, a mother’s intuition, that something wasn’t right.
“Your child has autism,” the first doctor said.
“Your child has autism,” said the second, confirming a diagnosis Johnson-Lambert said she was trying to deny.
“Those four words,” she said. “They’re devastating.”
Despite the prevalence of autism, the causes remain elusive. Now a new study reports that induced or augmented labor may increase the risk of autism for the baby by an average of 23 percent. But, with a wide spectrum of autism symptoms, the disorder is difficult to pinpoint and other factors clearly need to be researched. Johnson-Lambert didn't have induced labor. Neither did Sharon Rosenbloom.
When Sharon Rosenbloom of South Barrington gave birth to her son Joey 25 years ago, incidences of autism were considered to be about 1 in 10,000, though that may have been due to a lack of awareness and diagnosis in many cases. When Joey was diagnosed at age 2, research on the subject was almost non-existent, she said.
“It was just so rare,” she said. “There was really nothing to compare him to. Going through it without any guidance was extraordinarily frightening.”
According to the Centers for Disease Control and Prevention, one in 88 children in the United States are now diagnosed with autism each year, but the statistical prevalence of autism hasn’t always been this high.
Despite the statistical jump in numbers, scientists say we’re still unable to determine whether autism is on the rise in reality rather than in terms of diagnostic numbers.
“That’s the million dollar question right there,” said Simon Gregory, an associate professor of medical genetics in the department of medicine at the Duke Center for Human Genetics. “Is it actually an increase from previous years or are we getting better at diagnosing the disorder? Honestly I couldn’t tell you either way.”
Gregory is the lead author of the new study published in the JAMA Pediatrics journal, that reported a possible link between autism and induced or augmented labor. A team of scientists, obstetricians and epidemiologists analyzed eight years of birth records in the state of North Carolina from 1990 to 1998. This is the largest study of its kind. Data collected from more than 600,000 birth records was correlated with information obtained from the North Carolina Education Research Data Center from 1997 to 1998, and 2007 to 2008. Gregory said the data only accounts for those within the public school system but this worked to their advantage.
“If they’re designated with special needs in the public school they had to have a confirmed pre-diagnosis by a medical professional,” he said.
With the reasonably detailed birth records they were able to cross-reference this information, while also taking into account other traditional risk factors for autism such as the mother’s age, health and any elevated risks during childbirth, Gregory said. Some additional information, including the fraternal age, and if the parents themselves fall into the autism spectrum were not available. The study found that mothers who had induced and augmented labor had a 23 percent greater risk on average of bearing a child with autism, compared to mothers who had neither procedure.
Gender made a difference. The scientists found that if the mother had induced or augmented labor, odds of the child having autism increased by 35 percent if the child was male. Female children had an 18 percent greater risk if the mother was augmented during labor compared to the female controls.
While this study will help to better understand autism, Gregory said there are still hundreds of factors — biologically, genetically and environmentally — that can play a role in the development of the disorder, and these results do not in any way prove causation.
“All we’re saying is that we have added to the body of evidence, and that there are circumstances during birth that may lead to this predisposition,” he said.“It’s sort of chipping away at what the potential mechanisms are.”
Gregory also added that the results are not enough to change the current standards of medical care during childbirth. Induction is used to stimulate uterine contractions before a woman goes into labor and augmentation increases the strength, duration or frequency of uterine contractions once labor has already begun. He said both options are very beneficial tools for obstetricians whose primary goal will always be keeping both the mother and fetus safe. Other studies have also found that induction or augmentation greatly reduce the risk of fetal deaths, cesarean delivery rates and fetal health complications after birth.
“The benefit of induction far outweighs the risks of potentially what could happen,” Gregory said, especially with the need to follow up on current research.
Autism is usually detected at an early age, said Scott Hunter, associate professor in the pediatric and psychiatry department at the University of Chicago, who wasn't part of the research. Parents typically notice a lack of communication skills that plague a child, or an extreme fixation on certain sensory stimuli. The sensory fixation is usually due to an information overload, he said.
Autistic children are very perceptive and intuitive about their surroundings. When too much information is given, focusing on one fixation becomes a coping mechanism. For example most children go through a phase where they love dinosaurs, cars or dolls, but it doesn’t take them long to move on to something else. But an autistic child might keep that same fixation - they won’t be able to move past it, Hunter said. And in some cases they will focus on that for the rest of their lives.
Doctors can now make a diagnosis based on a detailed spectrum, which ranges from mild to severe autism, Hunter said. For mild-to-moderate cases like Regan's, children will typically have the same intellectual and cognitive skills as other kids their age, but their ability to engage with others and their social understanding is different. However, as with any disorder, Hunter said no two cases are exactly the same. On the severe end of the spectrum, autism can sometimes significantly impair a child’s speech and lead to other health issues including sleeplessness, epilepsy, mood disorders, and, according to some sources, gastrointestinal issues.
“When you’re not educated, the first thing you do is go back to the exaggerated stereotypes you’ve seen on television or read in the news,” Johnson-Lambert said. “You wonder about their future. Is she going to drive a car, live on her own, have a boyfriend, get a job, and just live a normal life.
However, both Hunter and Gregory said the results of this study have pointed toward a gap in research, more specifically surrounding the drugs that are used to induce labor. Exogenous oxytocin and prothsyglandin are the most commonly administered drugs for these procedures. Gregory said more research should be done to determine how the drug is possibly transferred to the brain or bloodstream of the fetus, and if it causes some sort of mental delay.
With hundreds of unknowns, there are also positives that offer hope for the future.
“Without a doubt, the earlier we identify that a child has the symptoms of autism and the more aggressively we intervene, the better the outcome,” Hunter said. “We’re able to help the child build the skills that they’re lacking, which leads to a better social adaption later in life.”
Hunter said, the amount of intervention and therapy is usually dependent on where a child’s symptoms fall on the autism spectrum. Johnson-Lambert said Regan is in the fourth grade and is doing very well in school. She has not needed a special education curriculum but receives special tutoring in math. Johnson-Lambert said she feels that raising Regan with all the conventional school and social activities has resulted in a better outcome overall.
“I just feel that when she’s around other kids, she can kind of learn from them, just as they need to learn from her,” she said. “I don’t think she would be doing as well as she is right now if I hadn’t exposed her to other programs.”
Rosenbloom said Joey began is freshmen year of college this year, a feat that was more or less deemed impossible in the past. Therapy is still a regular aspect of his life but combined with other methods he’s able to function at an optimum level.
“It’s still a day-to-day basis life, but nothing speaks better than progress,” she said. “You won’t really see someone in college with this disorder but he’s doing it…and it’s a pretty monumental thing.”
The topic of autism remains a heated subject, and whether or not a cure or cause can be found is still unknown. But Gregory said further research would only improve the odds of success.
“Science is a discussion,” he said. “And just by raising this issue we can at least help to kick up the discussion in the medical community.”