Tackling Autism
Florida Tech's second annual conference focuses on reaching children early BY SUSAN JENKS • FLORIDA TODAY • September 30, 2008 Long before her pediatrician, Juli Liske noticed changes in her toddler as he began racing around like a hurricane, unable to sit still. He started getting rigid when I would pick him up, he began developing food aversions, and he ran around screaming," she said, describing a cluster of small and not-so-small changes in his behavior. "He wasn't the child he had been before." Liske's maternal observations ultimately morphed into a book, "The Eye of the Hurricane: Finding Peace within the Storm of Autism," which retells Ben's story, as he moved from functioning at "rock bottom" as a 23-month-old autistic toddler to the highfunctioning 8-year-old he is today. Liske will be one of several featured speakers Friday at Florida Tech's two-day second annual autism conference, "The Many Faces of Autism." The conference title reflects the wide range in disability caused by autism spectrum disorders, as they are known, which cause substantial impairments in social interaction and communication. While some children, like Ben, develop into autistic savants, capable of impressive intellectual feats, others have severe learning impediments, unable to interpret social cues and prone to self-destructive behaviors. According to the Centers for Disease Control and Prevention, the prevalence of children with autism is rising, a testament partially to better diagnostic capabilities, but also to what some researchers believe is a true increase in the number of children affected. Estimates suggest about 1 in 150 children have an autistic disorder, making it the second most serious developmental disability in the United States, after mental retardation. What causes autism, however, remains unknown, although experts say environmental and genetic factors likely come into play, while the long-controversial vaccine link has been disproved in at least five major studies so far. But without a definitive culprit, the vaccine issue persists, and parents of children with these disorders often become vulnerable to unproven alternative therapies, said Ivy Chong, psychologist with a specialty in behavioral analysis and the program director for autism center at Florida Tech. "If we don't know what causes autism," she said, "how can we know whether an alternative therapy actually works?"
In contrast, applied behavioral analysis, a highly structured therapy that, for example, rewards a child for age-appropriate behavior, has a long-tested history of clinical evidence behind it, Chong and others said. For Liske and her husband, living in East Kentucky at the time Ben was diagnosed, there were few resources available for a child with autism. So the couple taught themselves these intense applied behavioral techniques, Liske said. Ben began to improve gradually. First, he learned to sit still "like a civilized child," she said, then to read and, finally, to play the piano and do complicated math problems, which he now does at the eighthgrade level, despite his young age. "My message to parents is they have to take the lead with autism," Liske stressed. "I whole-heartedly believe a child can be on the low-end of the spectrum and move to the high." And "they don't need a lot of (academic) letters behind their name to help these children," who, if caught early, "can reach their potential whatever it is," she added. " If we could do it, any parent can." Federal funding The National Institutes of Health pumped $127 million into autism research in fiscal year 2007, with additional federal money channeled into these disorders through the CDC and other agencies. And in July, in response to a mandate from Congress, the National Institute of Mental Health established the Office of Autism Research Coordination to monitor research across five primary institutes and several agencies within the Department of Health and Human Services, according to Della Hann, the office's acting director. The group also is charged with developing a research plan for autism, along with yearly updates to the nation on advances, she said, reflecting the intense interest during the past few years. "We are taking the most recent tools of technology and applying them to autism," Hann said, describing numerous studies under way. Twenty-two research studies are listed on the government clinical trials' Web site, including a large-scale study of underlying causes of autism and triggers of regression. But Hann and Lisa Gilotty, chief of the social behavior and autism program within the mental health institute, stressed results still are emerging, as scientists look for genetic
patterns among family members or biologic signatures in the brain that confer increased risk, along with better diagnostic tests for earlier intervention. Gold-standard measurements for an autism diagnosis presently are geared to children in the 36-month age range and older, Gilotty said, even though early warning signs sometimes appear before this. The American Academy of Pediatrics recommends screening for autism in children at 18 months and 24 months during routine wellness visits. "Research in this area is in progress," Gilotty said, "But some findings suggest a lack of early response to names, potentially, is a red flag," one of several still under investigation. And the earlier the intervention, the better the outcome. "What used to be thought of as a disorder of extreme impairment is now thought to be a spectrum of illness," Gilotty said -- a refinement offering hope, where little existed before. Not wanting to 'label' Kona Michaels, a towhead toddler dressed all in pink, zipped into the children's house on the Florida Tech campus at the autism center recently, her mother closely following behind. Although the 3-year-old Sebastian girl does not have a formal diagnosis of autism yet, her mother, Holly Michaels, said she suspected something differed about Kona's development, compared with that of her two older children. Not only did Kona have a slight fishy smell as a baby, she said, but at her 18-month check-up, "they asked if she spoke 20 words, and she didn't." Because her older children are naturally quiet, Michaels said, she had not paid much attention to a possible language deficit until then, nor did she want to "throw an (autistic) label on" Kona too quickly. So, like Liske, Michaels read up on applied behavioral analysis. And when she heard about Florida Tech's first autism conference last year, she attended, listing Kona's name for a spot in the school's autism program shortly afterward. "Kona's getting everything she would get with a formal (autism) diagnosis," from speech therapy to occupational therapy to applied behavioral analysis, Michaels said. "And, yes, we have noticed a difference. She went from barely talking to a vocabulary now of hundreds of words in just a year's time."
Contact Jenks at 242-3657 or sjenks@floridatoday.com
RED FLAGS FOR AUTISM SPECTRUM DISORDERS
Children and adults with an autism spectrum disorder might: Not play "pretend"games Not point at objects to show interest Have trouble relating to others or have no interest in other people Avoid eye contact and want to be alone Have trouble understanding other people's feelings or talking about their own Prefer not to be held or cuddled Appear to be unaware when other people talk to them but respond to other sounds Be interested in people, but not know how to talk to, play with or relate to them Repeat or echo words or phrases, in place of normal language Have trouble expressing their needs using typical words or motions Repeat actions over and over again Have trouble adapting to changes in routine Have unusual reactions to the way things smell, taste, look, feel or sound Lose skills they once had (stop saying words they once used.) -- Centers for Disease Control and Prevention
SAVING BABIES
Locals seek ways to cut infant death rates By ANNE GEGGIS Staff Writer They haven't yet taken their first breath of air, but Melanie Martin's twins already face daunting odds. Martin's ZIP code, 32114 on the west side of Daytona Beach, has the area's highest rate of infant mortality, accounting for 20 percent of Volusia County's infant deaths during the past 10 years. Her own sister's child is part of that statistic. Being born -- and surviving to blow out that first birthday candle -- are statistically the most dangerous part of life, until the infirmities of age begin creeping up at 54 for men and 58 for women. Though babies born today have 34 times the chance of making it to age 1 than those born 80 years ago, how much a baby benefits from those odds varies to a great extent on race. Consider: For every 1,000 births, an average of about six infants die in the United States, a bit higher than in most industrialized nations. The rate -- considered a key indicator in measuring the health of a community -- can be many times higher in Third World countries. But you don't have to span the globe to find infant mortality rates more on par with countries just beginning to get access to modern medical advances. Sometimes, all you have to do is cross town. While about five white infants per 1,000 births perish in their first year in Florida more than 12 black infants die. The trends are mirrored in Volusia and Flagler counties. There are no easy answers to explain the disparity in infant death rates between blacks and whites. More important, there are no easy solutions. new coalition of health care providers, hospitals and lawmakers hopes to help by increasing access to prenatal care -- a proven method for reducing infant mortality rates. But it won't be easy. Obstacles include money, a bureaucracy choked in red tape and prejudice -either real or perceived -- that threatens to thwart all attempts to fix the problem. The odds are daunting, but the stakes are nothing less than life or death. LOTS OF BARRIERS This story would be simpler if the problem were just a matter of poor mothers who couldn't afford medical care early in their pregnancies. The facts suggest a more complicated tale. Money, surely, plays a part. Among the 300 poorest census tracts in the state -- with both black and white majorities -- fewer than half have high infant mortality rates. (Florida Hispanics, generally, have a lower infant mortality rate than whites.) But among those with a black majority population, more than two-thirds have high infant mortality rates. One census tract in Orange County with a 68 percent black majority population has an infant mortality rate of 187.5 -- similar to that of the war-torn West African nation of Sierra Leone.
In her role as executive director of the Healthy Start Coalition of Flagler and Volusia Counties, Dixie Morgese sees a multitude of conditions that keep infants -- disproportionately black -from reaching their first birthday. "There are practical barriers," Morgese said, pointing to factors as simple as no fresh produce available in the most disadvantaged areas of the county. "There are also systemic barriers and attitudinal barriers that create this perfect storm that's getting in our way," she said. Compounding the tragic nature of the problem is that medical officials believe many of these infant deaths could be avoided. A review of the 29 infant deaths last year in the Volusia/Flagler area show 11 cases of late entry into prenatal care; three with inconsistent medical care; three more with anemia; seven with inadequate nutrition. Improving access to Medicaid would go a long way toward lowering those numbers, Morgese said, because more than 50 percent of all Volusia County (and nearly half of all Flagler County) births are paid for through the state's insurance for low-income mothers. Particularly disturbing to Morgese is watching the dropping rate of women who start prenatal care. Well-meaning changes have only made getting on Medicaid -- and beginning prenatal care -- more complicated, she said. For example, the state started giving pregnant, low-income women temporary Medicaid status once they arrived at a county Health Department with proof of pregnancy. The problem is doctors in private practice won't take a Medicaid patient until she's got permanent Medicaid status -- to guarantee payment beyond the 45-day temporary period. Meanwhile, the longer it takes to work out the red tape, the less likely it is a patient will find a doctor at all. Most doctors don't want to assume the liability of delivering an infant without prenatal care before the third trimester begins. Melanie Martin -- who had insurance from the beginning of her pregnancy -- is a good example. Through Medicaid, Martin was assigned to a managed care company, Amerigroup, which Volusia County residents started getting assigned to last year. The problem is it's not accepted by any Volusia County obstetricians who deliver babies in hospitals in Volusia County. "Every place told me the same thing," she said. "Orlando and Jacksonville were the closest places that took it. One office told me that I would have to pay $150 for one visit." Such complications have contributed to drops in the number of mothers seeking prenatal care, Healthy Start's Morgese said. State figures show those seeking prenatal care in the first trimester have dropped 5 percent in Flagler and nearly 6 percent in Volusia between 1999 and 2005. Meanwhile, the number with late or no entry into this care has increased by nearly 50 percent to account for 3.5 percent of all births in Volusia. "Each change they've made (to Medicaid), they were trying to make it better, but they ended up making it more complicated," Morgese said. FAIR TREATMENT
Insurance and access to doctors alone doesn't fully explain the disparity in infant mortality rates. Young, unexpectedly pregnant women of all races can be hesitant to seek treatment, but young black women may feel even more intimidated at the prospect of giving themselves over to the care of a largely white medical community. Many medical studies have shown minorities receive worse care than whites -- or are less likely to see a doctor in the first place. Dr. Alma Dixon, dean of the nursing school at Bethune-Cookman University, said that feeling of being neglected in hospitals and doctors' offices is quite common -- and a demonstrated reality -among black Americans. "We tell our students, 'You are going to encounter people who are not going to be fairly treated by the health care system,' " she said. "They don't have tests ordered simply because of ethnicity. The statistics are there." The notion of race affecting medical care was fueled by incidents like the Tuskegee studies of the past century -- in which black men were left untreated so researchers could study the effects of syphilis. Even today, blacks suffer disproportionately from serious illnesses like diabetes and heart disease, and they are under-represented in the medical field: Blacks account for about 3.5 percent of the nation's physicians, according to the American Medical Association. Some of the medical establishment chafes at the suggestion that such prejudices continue -- yet the perception persists. For example, the June edition of the Archives of Internal Medicine cited a study that found black patients were less successful in controlling their diabetes than white patients with the same doctor. The difference was attributed not to overt racism, but rather doctors' failure to tailor treatments to patients' cultural norms -- and, instead, use a one-size-fits-all approach. More education -- for prospective patients as well as doctors and nurses -- is needed, said Paula Pritchard, a professor at Bethune-Cookman University. "What can nursing do? We can learn to be culturally competent and fight all these different barriers in how patients are treated," she said. Dr. Thomas Coleman, director of the Volusia County Health Department, said that his department is budgeted to start monitoring the impact of this disparity in the community. "There's no question that the disparities exist," he said. "Even, unfortunately, with respect to the quality of care that racial and ethnic minorities receive." The antidotes? It has to be a multifaceted approach, Coleman said, which would include encouraging more ethnic and racial minorities to enter into medicine, getting more to recognize the need to establish a strong relationship with one doctor's office and more use of language interpreters. TRYING TO HELP Meanwhile, local advocates are working with area hospitals and lawmakers on different approaches they hope will reduce infant mortality rates. During the upcoming legislative season, Healthy Start's Morgese and a number of community partners hope to convince state agencies to excuse Volusia and Flagler counties from the current Medicaid model that requires a bureaucratic maze be completed before pregnancy care begins.
"We want women to be able to get care based on their need for it rather than the flavor of Medicaid they have," said Dr. Pam Carbiener, a local obstetrician. In this model, a pregnant woman will be able to see a doctor, no matter what her insurance status. For the service rendered to her, the doctor will then bill the woman's hospital of choice for delivery. The three area hospitals with obstetrical care have agreed to act as middlemen between the state and the doctor. After paying the doctor, the hospital will go to the state for payment. The hospitals will also be helping the pregnant women to get qualified for Medicaid as their care begins. Bill Griffin, director of planning at Halifax Health, said the minimal exposure the hospital will assume in providing care before Medicaid payment is guaranteed is worth it, considering how it reduces the risk of medical costs after the child is born. "We have a mission to the patient and the unborn, and we're trying to give them as healthy a start as possible," he said. "Secondly, I believe we have a mission to make it as cost-effective as possible and not add new expense and new processes" to solve this problem. Healthy Start is already working on another approach to increase prenatal care. Impressed by one Winter Park midwifery practice's study in which every black woman had a healthy baby who made it to toddler, Healthy Start a few months ago began referring patients unable to get into a doctor to two local midwives who trained with that clinic. Compared to a typical obstetrical practice, these operations with a midwife and an assistant have lower overhead costs and less liability. All involved have also been trained in rendering services that delve into every aspect of the mother-to-be's life -- without judgment. "We don't have any obstacles to care in our clinics -- if you are pregnant, you are eligible for service," said Jennie Joseph, a licensed midwife and executive director of Common Sense Childbirth in Winter Park. The midwives work in conjunction with the doctors who will deliver the baby at the hospital. Visiting the midwife, patients will come to the hospital with records to tell the delivering doctors about the baby's size, position or need for any special interventions. The approach has already made a big difference to Adrian Ashe, 29, of DeLand. A twin pregnancy in 2006 ended in miscarriage -- an event she blames partly on her inability to find a doctor's office that took her Medicaid HMO. But she got in immediately to see Debbie Myers, an Orange City midwife. "I really like her," said Ashe, who needed help sorting through which medications she was on might harm her developing baby, a girl, due in January. "She's patient. She's helpful. It's easy to talk to her about anything." Myers said she knows that she'll never receive payment for some of the work she does. "They have a place to come to," she said, looking around her small office in a Graves Avenue strip mall. "We can't do everything for them, but we'll certainly do everything we can." At Agape Midwifery in Daytona Beach, Karen Kennedy-Tyus gave Melanie Martin her final check before releasing her to the care of an obstetrician, now that she's finally been switched to Medicaid that's accepted there.
"You're making good babies," Kennedy-Tyus told her. "I want some big, chunky babies out of you. You're going to keep them in. I just know it. A few more weeks would be ideal." Martin smiled and turned to leave. Kennedy-Tyus told her she'd like to see her again: "I want to see some cute pictures, OK?" -- News-Journal researcher Janice Cahill contributed to this report. Baby Justine's family recalls a life too short Baby booties. Stacks of pictures. Remembrances written in a Winnie-the-Pooh baby book. And a marker at an Eatonville cemetery. Little else is left to mark the 45 days that Justine Noreen Young spent on Earth. The Deltona infant's death last year from an infection she likely contracted from her mother at birth -- a death the Centers for Disease Control and Prevention calls "preventable" -- is a study in the array of circumstances that can go wrong when a new life comes into the world. It was an unplanned pregnancy. And the baby's parents, Shannon Harrell, then 17, and Justin Young, then 18, didn't tell their parents until 3 1/2 months before the delivery. Harrell, who's now attending college at Daytona State College and working in a restaurant, said she was afraid of what people would think, at first. "I didn't see the difference whether I went early or went late," she said of getting to the doctor. In Harrell's case, she might have dated the pregnancy wrong, with Justine arriving more than a month early at 6 pounds, 11 ounces. The early arrival meant Harrell didn't get a test that would've told doctors to administer intravenous penicillin at the time of delivery to prevent a possible spread of infection. Harrell said she doesn't think she received antibiotics as the standard of care would dictate when a mother's Strep B status is unknown. The doctor who delivered her baby has since died. Nevertheless, the baby seemed fine at her three-week check-up. The next evening, though, she kept her mother up all night crying. Harrell took her to the emergency room. Blood was drawn. The baby was looked over. And then sent home. The next morning, it appeared that the baby was having trouble breathing. This time, crash carts and hospital personnel came running. At last a diagnosis was given: meningitis. And a transfer to an Orlando hospital. Twenty-one days later, Justine stopped breathing. "The saddest thing was the day I went to pick out the dress to put on this child to be buried in," said Ernestine Young, the baby's grandmother. "I broke down in the middle of the store and . . . had to call someone to come and get me out of that store." Justin Young said all he can do is memorialize his daughter when he passes the exit for the Eatonville cemetery where she's buried. As the car rolls along Interstate 4 between Lee Road and the Maitland exit, he doesn't allow any smoking, talking on cell phones or listening to the radio in his car. "I want to remember her," he said. anne.geggis@news-jrnl.com Why is Prenatal Care So Important?
· Monitoring the baby's organ development alerts doctors to the need for immediate interventions at delivery. · Testing for high blood sugars shows if a diet needs to be modified or if medication should be prescribed. · Monitoring the mother's health can point out risky conditions such as low iron and spiking blood pressure. · Determining the baby's position as the time for delivery nears helps determine if a Caesarean section should be scheduled. SOURCE: News-Journal research Infant Mortality Rates Around the Globe The rate of a nation's infant mortality is regarded as a key indicator of the overall health of the community. Here's how the United States stacks up: Country, Deaths (per 1,000 live births in 2005) Iceland, 2 France, 4 Germany, 4 Canada, 5 United States, 6 Lithuania, 7 Bangladesh, 54 Azerbaijan, 74 Congo, 81 Cambodia, 98 Rwanda, 118 Chad, 124 Sierra Leone, 165 SOURCE: United Nations Development Programme Closing the Gap? The rate at which Florida's white and black infants die before their first birthday has dropped considerably, but black infants still face a mortality rate more than twice that of white infants. And black infants still die at a rate higher than white infants did in 1978. Since that year, the white infant mortality rate has dropped by 52 percent while the black mortality rate has dropped 39 percent in the same time. Figures represent deaths per 1,000 live births. Year; all races; whites; blacks 1978; 14.1; 11.7; 21.1 1988; 10.6; 8.5; 17.8 1997; 7.1; 5.6; 12.3 1998; 7.2; 5.8; 12.4
1999; 7.3; 5.6; 13.4 2000; 7.0; 5.4; 12.6 2001; 7.3; 5.5; 13.5 2002; 7.5; 5.9; 13.6 2003; 7.5; 5.8; 13.7 2004; 7.0; 5.5; 13.2 2005; 7.2; 5.3; 13.6 2006; 7.2; 5.6; 12.9 SOURCE: Florida Department of Health About This Project These stories were reported with the assistance of the University of Southern California Annenberg/California Endowment Health Journalism Fellowships, administered by the USC Annenberg School for Communication. The Daytona Beach News-Journal was selected by the program this year to report on the topic. Infant mortality rates (PDF) for Volusia available at www.newsjournalonline.com/downloads/volusiainfant.pdf ; Flagler, www.newsjournalonline.com/downloads/flaglerinfant.pdf ; and Florida, www.newsjournalonline.com/downloads/floridainfant.pdf