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| Parents rise to autism
challenge |
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| July 13, 2003 For more details Visit the Autism Society of America's Web site at www. autism-society.org. To learn more about local resources and services for people with autism, visit the ASA Oakland County Chapter's Web site at www.asaoakland.org. There are few more frightening things parents can hear than that their child has been diagnosed with autism. And that is something more and more parents are hearing, nationally and in Oakland County. The Autism Society of America reports a 172 percent increase in cases of the developmental disorder in the past decade. In Oakland County, the number of students placed in special classrooms for the autistic has risen by more than 400 percent in those years. There are variations in severity - but most experts agree there is no cure. Generally, children with autism will never learn, achieve and communicate as other children do. Their parents often face a lifetime of physical, intellectual and emotional demands. "It's very, very, very stressful," said Vicky Debold, an assistant professor in the School of Nursing at the University of Michigan. A Royal Oak resident and the mother of a 6-year-old son with autism, she has learned first-hand how taxing the disability can be. The worries about the health, safety and future of these children never stop. "As a nurse and a practicing clinician for 25 years, I was familiar ... but I know now that this is what parents of children with autism deal with all the time." Seeking answers Though the cause or causes of autism are unclear, medical experts and educators are increasing their knowledge of just what it does and what therapies may help in coping with it. The first signs of the disability typically appear within the first three years of life and include impaired language development, delayed or non-apparent social skills and abnormal reactions to sensory stimuli such as light, sound or touch. Not every case is the same. Autism is described as a "spectrum disorder" because those affected can display any of a wide variety of characteristics and behavior traits. The severity of these traits can vary from mildly apparent to debilitating. On the extreme end, children and adults with autism are sometimes described as living in their own worlds. Before autism was identified as a separate condition in 1943, the disability was mistakenly diagnosed as childhood schizophrenia. Those who have a more mild form of autism known as Asperger's syndrome may be able to function but have difficulty socializing with others and a strong insistence on observing routines. And some feel that a lot of different conditions have been lumped together by those who diagnose the disorder. "The more I meet people with autism, the more I wonder how they can all be put under the (same) umbrella," said Beth Kimmel, outgoing president of the Autism Society of America, Oakland County Chapter. "I can introduce you to five people who have autism and guarantee you'll wonder how they all got the same label." Though no medical connections have been made, some within the autism community believe so-called "attention deficit syndrome" and hyperactivity disorder are actually mild forms of it, as well. Like so much surrounding autism, this is subject to intense disagreement and debate. Dr. Ernest Krug, director of the Center for Human Development at William Beaumont Hospital in Royal Oak, said that 10 percent to 20 percent of autism cases may be spurred by medical disorders such as Fragile X syndrome, tuberous sclerosis and congenital rubella syndrome. Yet more than 80 percent of cases are diagnosed as idiopathic - meaning the cause is unknown. Krug also said recent research indicates those affected by autism may have a genetic disposition to it, but he added that there is much to be learned. "You also have some environmental factors that contribute to realization of the autistic behavior," he explained - then added that there is insufficient knowledge about just what those factors are. Debold agreed that the medical community needs to focus more attention on research. "The way I've heard it said, the genes load the gun, but the environment pulls the trigger," she said. "We've got to find out what those factors are." One possible trigger, some in the autism community say, is mercury used in an immunization preservative called thimerosal. A growing number of caregivers are convinced that simultaneous increases in use of thimerosal and autism, as well as similarities in the symptoms of mercury poisoning and autism, speak volumes about the role immunizations have played in autism cases. But Krug said medical research exploring that possibility has convinced the scientific community that no causal relationship exists. "When you look at the effects of mercury poisoning on people neurologically, they're very different," he said. Whatever the cause, there is no debate about the alarming rate with which autism diagnoses are growing. Still considered a low-incidence disability, autism affects between two and six of every 1,000 children born. For unknown reasons, boys are four times as likely to be affected as girls. Why the mysterious spurt in cases? Some blame it on increased use of thimerosal. Others argue improved diagnostic tools and increasing public awareness have led to more diagnoses. Still others say the growth rate is as mysterious as the disability itself. Room for hope? Much of the literature on autism describes it as a lifelong disability for which there is no cure. And, indeed, many parents and caregivers of people with autism live with the concern that their charges will need support and care even after they are gone. But like many other issues surrounding autism, even the notion of a cure is a matter of debate. "Every medical article out there will start with the phrase: Autism is a lifelong disability with no cure, or have it somewhere in the text. It's an absolute fallacy," Debold said. She argued that advancing that notion fails to acknowledge advances some people have seen with various approaches to treating the disorder. Experts working with Debold's son have been startled by changes they've seen during the past 31/2 years and would not likely diagnose him with autism now, she said. A number of published accounts echo Debold's experience. In addition to using traditional therapies, Debold has changed her son's diet to avoid food suspected of worsening the symptoms, and she has provided him with dietary supplements to address biochemical deficiencies. But, she cautioned, "The approach we've used with him may not be correct for another child." Debold added that because there is so much uncertainty surrounding autism, she isn't sure that the positive changes in her son's behavior are permanent. "He's not out of the woods by any means," she said. Traditional therapies that are used to make autism more manageable reward children for desired responses and behaviors. Another approach, called the Play Project, being pursued by researchers at the University of Michigan, has shown encouraging signs of reducing the effects of autism by engaging children with the disability in time-intensive, directed-play activities designed to capitalize on their ability to learn. Long term, the greatest hope may lie in science's growing ability to manipulate genes. "If we can become a little more certain about where the genetic markers are that play a role in autism, we may be able to develop a gene therapy to replace them," Krug said. But don't hold your breath. Like other gene therapies, Krug said he believes one addressing autism is at least a decade away. Today's challenges Without a definitive cure and faced with a rapidly growing population of students with autism, Oakland County is feeling the strains of meeting the educational needs of those with the disability. Sharon Schwarze, supervisor of regional autism services for Oakland Schools, said because its services are effective, the system has become a magnet for parents of children with autism. "It's both a blessing and a curse because it says we're serving kids well, but it overloads us and it also overloads the social service network here," she explained. There are more than 800 such students in local programs now, with another 100 expected to enroll next year. Center programs in Royal Oak, Birmingham, Clarkston and West Bloomfield handle the educational needs of students with the most severe forms of autism. Several local school districts operate classroom programs specifically for less-impaired students, and students with high-functioning forms of the disability are often integrated into general education classrooms. Schwarze said Oakland Schools strives to place all autistic students in the least restrictive environments possible and to optimize their potentials to learn. "To the extent that those kids are capable, you plug away with them at the general education curriculum." But students with autism learn differently from others. Many don't generalize things they learn. A trip to learn how to go shopping, for example, might have to be repeated at several grocery stores to reinforce patterns. For some people with autism, "they never see the forest," Schwarze said. "It's all trees." In addition to teaching life skills and elements of the general education curriculum, state law requires school programs to begin life transition and career planning curricula for students with autism beginning at age 14. Because of the growing demand and limited resources, Oakland Schools has convened an Autism Focus Group. Teachers, consultants, administrators, parents and school staff spent several months last year comprehensively investigating population growth and student needs with the Oakland Schools Autism Program. Kathleen Golinsky, director of special education for Oakland Schools, said a broad range of recommendations for improvements within the system is now before its board of trustees. These include increasing the number of classroom programs in local districts. "The more district staff that are comfortable with their abilities to meet the needs of these children, the less likely they are to refer them to a center program," she said. When possible, "you want a student in their local community because they are part of that community. That is our guiding light." Another challenge: A lack of teachers certified to work with students with autism. "There's a shortage across all areas of special education, but this one is critical," Golinsky said. Oakland Schools, along with a number of state and local education organizations, is offering future special education teachers incentives, including grants and tuition reimbursements, to enter the field. A broader issue The medical and educational communities are not the only ones struggling with the problems of autism. There are at least 25 community organizations in Oakland County that in some way serve the needs of the autistic. Kimmel said the recent creation of the Autism Council of Oakland County - made up of a number of independent autism organizations - will help not only the autism community but society in general meet the needs of this growing population. One aspect the council has agreed to focus on is the need of families of people with autism to find occasional relief from the constant caregiving demands. A respite center where people with autism could be cared for would provide such opportunities. Kimmel said participants in the Autism Council are combining efforts to address the respite issue and others. "I'm just so pleased that egos were checked at the door, and we were able to start working on some of these things," she said. Carolyn Gammicchia, a Shelby Township police officer and mother of a 12-year-old son with autism, said she, too, has been pleased to see increasing societal efforts to meet the needs. Co-founder of Law Enforcement Awareness Network (LEAN) on Us, she is working with Michigan Protection and Advocacy services to improve emergency responder training in ways related to people with disabilities. The collaboration also seeks to better educate parents of disabled children to respond to emergencies and to prevent victimization of the disabled. Gammicchia said that because parents are accustomed to providing so much for their children in care and support, they sometimes neglect teaching the children to work with emergency responders and to avoid victimization. "Safety and health concerns are always the last things they teach because, as a parent or caregiver of a person with a disability, people often think they will always be there to take care of them." Because parents of people with autism won't always be there for their children, many in the community say society needs to assume a larger role in caring for them. With this come costs, however. The Autism Society of America reports that dealing with the disability costs this country $90 billion per year. It estimates that cost could rise to $400 billion a decade from now. Besides financial concerns, many in the autism community hope to see a society that better understands autism and how to relate to those with it. Gammicchia said this is particularly important when it comes to dealing with behavioral characteristics considered rude or disruptive in general society. "People often have a preconceived notion that we are bad parents or that (their son) was out of control," she said. "We would get mad because we would say he has autism and expect people to know what that meant. But people really don't." So now, she hands out cards containing information about autism and its effects to people alarmed by behaviors they don't understand. Characteristics of autism - Source: Autism Society of America |
| ©The Oakland Press 2003 |
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