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A Parent’s Guide to Understanding Autism Spectrum Disorders by Marnee Colburn, Ph.D. Published: June 2006 Autism spectrum disorders (ASDs) include autism, Asperger’s disorder and several lesser-known related conditions. ASDs are part of a larger group of disorders known as pervasive developmental disorders (PDDs), which are characterized by early onset (occurring before age three). Children with autism spectrum disorders usually have difficulty socializing and communicating with others, and often display restricted interests and difficulty accepting and adjusting to changes in a set routine. Of the ASDs, autism is the most common childhood developmental disorder, occurring in an estimated one in every 166 births. Roughly translated, this means that as many as 15 million American adults and children have some form of autism. And this number is on the rise. Autism knows no racial, ethnic or social boundaries; nor does it consider family income, lifestyle, or educational level. Autism can affect any child, any family. And though the rising incidence of the disorder is consistent around the globe, autism is four times more prevalent among boys than girls. ASDs are among the least understood childhood developmental disorders. There is, however, a growing body of research and a heightened awareness of the rising number of individuals with these conditions. It is therefore critical that parents, educators, clinicians and the general public become more aware and informed about these conditions. Parents are often the first to notice unusual behavior in a child. In some cases, a baby is seemingly different from other children, perhaps unresponsive to people, or tending to focus on one item for long periods of time. Research shows parents are attuned to noticing developmental problems, even though they may not know the nature of the cause. Parents should follow their instinct in these matters. When the parental radar goes up, it’s usually significant. There is no shame in bringing your concerns to a pediatrician. ASDs can also develop in the toddler stage. When a seemingly typical toddler suddenly becomes withdrawn, silent, self-abusive, or indifferent to social overtures, something is wrong. Concerns about labeling a child with an autism spectrum disorder shouldn’t interfere with getting the right diagnosis. The earlier a child is diagnosed, the earlier the necessary interventions can begin. For a child to be diagnosed with ASD, he or she must exhibit difficulties in at least one of the following areas before the age of three: socialization, communication, or restricted behavior. ASD is usually defined by a certain set of behaviors; however, people can exhibit any combination of the behaviors in any degree of severity. For example, in the area of social skill deficits, a child with ASD may not interact with people the way most children do. In some cases, an autistic child may not be interested in people at all. He or she may not engage in eye contact or notice when others are talking. Some children don’t like to be held or cuddled. Some cuddle only on their terms. Others have trouble understanding feelings, even their own. Children with an ASD may be interested in people, but they won’t know how to talk with, play with or relate to others. If a child has communication difficulties, he or she may not talk at all. This is true for about 40 percent of children with an ASD. Others have echolalia, or the impulse to repeat what has already been said, even if the words don’t need repeating. For instance, when asked, “Do you want juice?” a child will repeat the question rather than replying with a “yes” or “no.” Another child, appearing nonsensical, may repeat a TV commercial in response to a question or statement. Some children with this condition confuse pronouns (e.g., I, you). Other communication difficulties involve speaking in a volume that is flat or unregulated (overly soft or loud). People with ASD often stand too close to others, not seeming to understand personal space. They may speak on one topic too long and not notice the listener’s boredom. They may talk profusely about an idiosyncratic topic, or one of intense interest only to themselves (door frames, lawn mowers, bridges, etc.), without allowing for a back-and-forth conversation. They are often perceived as rude or self-centered in conversation as they are unable to pick up on normal communication cues. Those with ASD show restricted interests and may repeat specific actions over and over again. They may pace for hours or interact with a string or other inanimate objects for long periods of time. They may repeat words or sounds for hours unless distracted. They typically require extreme predictability in their lives and cannot adapt to even the smallest change to their daily routine. While, to some degree, all children crave sameness, children with ASD will throw tantrums and become aggressive or self-mutilating if the tasks of a simple routine, such as brushing their teeth and reading a bedtime story, are reversed. Diagnosing an autism spectrum disorder is a two-step process beginning with a well child check-up. A pediatrician can perform a developmental screening test just ask. With the help of specialized screening instruments, and your own observations and instincts, you can gather and sort information about your child’s communication skills and social development within a clinical setting. If, following a well child check-up, your pediatrician notes any possible indicators of an ASD, seek further evaluation. The second stage of ASD testing must be more comprehensive in order to either document or rule out autism spectrum disorder or another developmental problem. Because ASDs are complex disorders that may involve other neurological or genetic problems, a comprehensive evaluation should include both neurological and genetic assessment, as well as in-depth cognitive and language testing by a multi-disciplinary team. Other tests you’ll want for your child are a hearing evaluation and a lead-toxin screening. If your child has been carefully evaluated and he or she is then diagnosed with an autism spectrum disorder, you may feel overwhelmed at first. You may feel inadequately prepared to help your child realize his or her full potential. As you begin to look at treatment options, and at the types of aid available for a child with a developmental disorder, be sure to keep a detailed record of any doctor’s appointments, reports and evaluations so that your child’s eligibility for special programs will be well-documented. The Individuals with Disabilities Education Act (IDEA) is a federally-mandated program that assures every American child with disability a free and appropriate public education. If your child is under three years of age, he or she should be eligible for an early-intervention program, which is available in every state. You should be given a formal individualized family service plan upon enrollment. By law, public schools must prepare and carry out a set of instructions and goals for every school-age child in a special education program. A child’s skills are then reviewed every three years. Research into the causes, the diagnosis and the treatment of ASD has advanced in recent years. With standardized diagnostic tools, ASD can now be diagnosed at an earlier age; and, with early diagnosis, better treatment options can help a child with ASD develop to his or her greatest potential. Most professionals agree that early intervention is crucial and that highly-structured educational programs benefit the majority of children with ASD. There are still no definitively known causes for ASD, yet some children appear to be more at risk for developing it. The reasons, however, remain unclear. Most experts believe ASD is caused by a combination of both genetic and environmental factors. There has been recent interest in environmental toxins, particularly mercury, as possible contributors. A concern that a mercury-based preservative (thimerisol) used in the measles-mumps-rubella (MMR) vaccine caused the steep rise in autism stormed through media headlines. Although thimerisol is no longer included in most MMR vaccines, large-scale studies failed to uncover a link between this preservative and autism. Before you make any decisions about your child’s treatment, you’ll want to gather information about various treatment options and make a choice based on your child’s needs. The Autism Society of America and The National Institute of Mental Health are two online resources for parents. Each website suggests questions to ask professionals in order to get the answers you need. Many treatment and education options are available for children with ASD. An effective treatment program will build on the child’s interests, offer a predictable schedule, teach tasks in a series of simple steps, actively engage the child’s attention through structured activities, and provide regular behavioral reinforcement. One program in particular, called applied behavioral analysis (ABA), has become widely accepted as an effective treatment. A report from the Surgeon General states, “Thirty years of research demonstrated the efficacy of ABA methods in reducing inappropriate behavior and in increasing communication, learning and social behaviors.” Parental involvement has also emerged as a major factor in the treatment of ASD. Parents who work with teachers and therapists to identify behaviors and determine how to change them have seen visible results. Because parents are the child’s earliest teachers, more programs are training parents in how to continue ASD therapy at home. Other treatment options include medications to treat behavioral problems such as aggression, self-injury and severe tantrums. Medications can help when these behaviors keep a child with ASD from functioning well at home or at school. However, a child with ASD may not respond to medications as a normally-developing child would. Therefore, it’s important that parents work closely with a doctor who is experienced in treating children with ASD, and that the child is closely monitored while taking any medications. In an effort to do everything possible to help their children, many parents continually seek new treatment methods. Some may be developed by reputable therapists, others by parents of a child with ASD. Although an unproven treatment may help one child, it may not be beneficial to another. Any treatment whether a medication, a program or a device must undergo clinical trial before it can be proven effective. The following interventions have been reported helpful to some children, though large-scale efficacy or safety of these has not been proven through clinical testing: Gluten-free diet. Some parents have found a gluten-free/casein-free diet helpful to a child with an autism spectrum disorder. Gluten is a substance found in the seeds of various cereals and in plants such as wheat, oat, rye and barley. Similar to gluten, casein is the principal protein in milk. Since gluten and casein are found in many of the foods we eat, following a gluten-free/casein-free diet may difficult. Many grocery stores, however, now include a large selection of gluten-free products. Vitamin B6. Some parents recommend vitamin B6 for children with ASD. Taken with magnesium, (which makes the vitamin effective), vitamin B6 has beneficial properties. The results of research, however, are mixed. Some children respond positively, while others react negatively. Still, other children are not affected at all. Secretin. In the search for an effective treatment for ASD, recent discussions about the role of secretin, a substance approved by the Food and Drug Administration for gastrointestinal problems, contain unofficial reports on the improvement in ASD symptoms including sleep patterns, eye contact, language skills and alertness. However, data from clinical trials has shown no significant improvement in symptoms among patients who received secretin compared to those who received a placebo. Despite recent advancements, diagnosing and treating autism spectrum disorders is still a challenging task. Parents must stay well-informed so they can advocate for their child’s health and well-being. They are encouraged to constantly seek support from family members and from available community resources. Remain hopeful as you continue to seek new and tested treatments for your child |
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Williamsburg Health Journal
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