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Instant Help for Children and Teens with Asperger Syndrome This Instant Help Chart was written by Corinna Fales Published by Childswork/Childsplay 303 Crossways Park Drive Woodbury, NY 11797 www.Childswork.com Instant Help for Children and Teens with Asperger Syndrome www.Childswork.com © 2005 Childswork/Childsplay About Instant Help Charts Medication and Asperger Syndrome Keep In Mind Through everyday conversations you can help individuals with AS to: See that there are difference choices they can make and different consequences to their choices. Recognize that there are different ways to interact with people, including negotiating, persuading, discussing, and disagreeing. Understand that different people have different ways of expressing themselves. See that they can predict how others will react to them, by understanding the underlying rules of both verbal and nonverbal communication. There is no approved medication for the symptoms of AS. However, medications do exist that may help with some of the coexisting conditions. These include those used for attention deficit disorders (such as psychostimulants), for anxiety (anti-anxiety medications), and for severe obsessive behavior and depression (antidepres- sants). The complex nature of this disorder, along with the desperation of parents, leads some medical professionals to experiment with different combinations of drugs to handle different symptoms and behavioral problems. While this type of experimentation is understandable, there is a danger that the interactions of some medications can lead to a worsening of symptoms. The objective monitoring of a child’s behavior should always accompany treatment with medication. The Brain and Asperger Syndrome Some research suggests that people with AS have neuronal abnormalities in the prefrontal lobe and that these abnormalities are related to the clinical severity of their symptoms. It is not known how these prefrontal neurons are abnormal or how the abnormalities relate to the severity of such symptoms as obsessive behaviors and social difficulties. One study showed reduced activation in the fusiform gyrus, the area of the cerebral cortex where recognition of faces takes place, which may account for the interpersonal problems experienced by people with AS. Other studies suggest that a deficit in sensorimotor gating may make it hard for persons with AS to inhibit repetitive thoughts, speech and actions. Continued research in the brain differences associated with Asperger syndrome should make it easier to diagnose and treat this disorder. Resources for Helping Children and Teens with Asperger Syndrome Books for Parents Parenting Your Asperger Child: Individualized Solutions for Teaching Your Child Practical Skills. Alan Sohn and Cathy Grayson, Penguin Group, 2005 Asperger’s Syndrome and Difficult Moments: Practical Solutions for Tantrums, Rage and Meltdowns. Brenda Smith Myles and Jack Southwick, Autism Asperger Publishing Company, 2005 The Many Faces of Asperger’s Syndrome. Maria Rhode and Trudy Klauber, (Eds.), Tavistock Clinic Series, 2004 A Parent’s Guide to Asperger Syndrome and High-Functioning Autism: How to Meet the Challenges and Help Your Child. Sally Ozonoff et al., Guilford Press, 2002 Pretending to Be Normal: Living with Asperger’s Syndrome. Liane Holliday Wiley, Jessica Kingsley Publishers Ltd, 1999 Alternative Treatments for Children within the Autistic Spectrum. Deborah Golden Alecson, McGraw-Hill, 1999 The OASIS Guide to Asperger Syndrome. Patricia Romanowski Bashe, Crown Publishers, 2001 Can I Tell You About Asperger Syndrome?: A Guide for Friends and Family. Jude Welton, Jessica Kingsley Publishers Ltd, 2004 4 • Instant Help for Children and Teens with Asperger Syndrome Books for Children and Teens Books for Professionals Freaks, Geeks and Asperger Syndrome: A User Guide to Adolescence. Luke Jackson, Jessica Kingsley Publishers Ltd, 2002 Addressing the Challenging Behavior of Children with High-Functioning Autism: A Guide for Teachers and Parents. Rebecca A. Moyes, Jessica Kingsley Publishers Ltd, 2002 Asperger’s Syndrome, The Universe and Everything: Kenneth’s Book. Kenneth Hall, Jessica Kingsley Publishers Ltd, 2001 Knowing Yourself, Knowing Others. Barbara Cooper & Nancy Widdows. Instant Help Publications, 2005. The Social Success Workbook. Barbara Cooper & Nancy Widdows. Instant Help Publications, 2005. Asperger Syndrome: What Teachers Need to Know. Matt Winter, Jessica Kingsley Publishers Ltd, 2003 Asperger Syndrome. Ami J.M. Klin et. al, (Eds.), Guilford Press, 2000 Asperger Syndrome and Adolescence: Helping Preteens and Teens Get Ready for the Real World. Teresa Bolick, PhD, Fair Winds Press, 2001 Childswork/Childsplay - (Childswork.com) Defining the Problem The American Psychiatric Association Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision describes the essential features of Asperger syndrome (AS) as “severe impairment in social interactions and a restricted repertoire of behaviors, interests and activities with no substantial delays in language, self-help skills, or curiosity about the environment.” Current use of the term varies considerably, as do the individuals who are diagnosed with it. Although the DSM-IV classifies Asperger syndrome as a pervasive developmental disorder that is part of the autistic spectrum, its differences from autism— which relate to intelligence level and the development of language, curiosity, and self-help skills— are major. Children with AS may avoid eye contact, seem eccentric, speak in a monotonous and “professorlike” way (lacking appropriate empathy and give-and-take), have difficulty making friends, fail to initiate or reciprocate normal sharing and affectionate behavior, and focus exclusively and obsessively on one specific area of interest (in which they frequently exhibit exceptional skill or talent and an advanced vocabulary). They may also be extremely literal and naïve, become anxious over any change in the usual order of things (and develop obsessive routines to re-establish their (continued on p. 2) Counseling Children and Teens with AS There is no single best treatment for children with AS, who may seem more different from each other than alike. Research shows that effective treatment is based upon a thorough assessment of each child and should be highly individualized—tailored to the child’s particular strengths, needs, and abilities. Goals in Developing a Treatment Plan The primary goal of any treatment plan is to promote and enhance communication and social competence, which includes: Teaching the child how to navigate social situations Strengthening ability to interpret nonverbal cues Learning how to identify and anticipate anxiety-provoking situations Identifying and building upon the child’s individual interests and strengths Defining and teaching adaptive life skills necessary for self-sufficiency Managing disruptive behavior An effective treatment program builds on the child’s interests and offers a predictable schedule. Interpersonal and communication skills are taught as a series of simple steps, in highly structured activities, and with regular reinforcement. Social skills training may be combined with cognitive behavioral therapy, medication for co-existing conditions, and other forms of counseling. Specific skills are taught through verbal and explicit communication and include: Breaking down tasks, skills, and appropriate behavior into a series of simple and complete steps—essentially, rule sequences—that are rehearsed until they become rote to the child and available for dealing with social situations (from personal interaction to taking public transportation) Encouragement of self-evaluation and consideration of alternatives Development of specific problem-solving strategies Cultivation of social awareness Regular reinforcement of behavior This chart is intended to provide a summary of the critical information available on helping children and teens with Asperger syndrome to insure that every child gets the most appropriate and comprehensive consideration. Assessing AS Since children with AS differ widely and it is important to build treatment programs based upon their specific skills, interests, and abilities, direct observation of the child is particularly important in assessment. In addition, assessment should include: Interviews with the parents, teachers, and child Standardized behavior rating scales given to parents and teachers, such as The Social Responsiveness Scale (Western Psychological Services) A review of school records and reports Tests to review intellectual ability and academic achievement Additional assessment might also include: Social Communication Questionnaire (Western Psychological Services) Asperger’s Syndrome Diagnostic Scale (Autism/Asperger Publishing Co.) Gilliam Asperger’s Disorder Scale (Pro-Ed) Treatment needs are best determined by an interdisciplinary team with input from parents and teachers, focusing primarily on empirical observation. Cultural biases should also be considered in doing an assessment of children from a minority background. Defining the Problem (continued) calm), dislike being touched (and react strongly), and be highly sensitive to smell, sound, color and taste (with intense likes and dislikes in these areas). Individuals with AS have inherent difficulty with “reading” the nonverbal cues that are part of everyday social interaction. This makes it difficult for them to understand others’ feelings and results in anxiety when they are required to meet the social demands of everyday life. Though the physiological basis of AS is still not fully understood, research shows that it is diagnosed much more frequently in boys than in girls and may be genetically linked. Children do not outgrow the syndrome, nor is there any known cure for it, but children who receive effective treatment—the earlier the better— can learn to cope with it. Fast Facts According to the Asperger Syndrome Coalition of the United States, the onset of AS is later than what is typical in autism, or at least it is recognized later. A large number of children are diagnosed after the age of 3, with most diagnosed between the ages of 5 and 9. Asperger syndrome is a relatively new diagnosis, first appearing in the DSM-IV in 1994; its definition was reworded in the 2000 Text Revision. There is still some debate among professionals about its proper classification. Individuals with AS are sometimes misdiagnosed as having oppositional defiant disorder (because of their failure to follow instructions and strong—even violent—reaction to others), attention deficit disorder (because they often have an attention deficit), obsessivecompulsive disorder (because of their obsessive behaviors), PDD-NOS (pervasive developmental disorder-not otherwise specified), or even schizophrenia (because of their social deficits and odd behavior). In addition to an attention deficit, individuals with AS are prone to generalized anxiety, specific phobias, and low self-esteem. They are also vulnerable to depression, especially in adolescence, as they become increasingly aware that they are different. Learning difficulties that relate to the development of fine motor skills and understanding language are common in children and teens with AS. Children with AS may also develop other personality disorders, which can complicate the diagnosis and treatment. The Dos and Don’ts of Communicating DON’T • Give complicated directions. DO • Break down into clear, short steps what the child needs to do. • Scold, punish, or yell. • Set limits and provide clear steps for managing • Try to force affectionate behavior. • Label, mock, or tease. • Accept what the child can tolerate. • Recognize that the child sees the world very • Expect “normal” conversation. • Engage children and teens in areas where they behavior. differently and is easily overwhelmed. show interest. What Parents Need to Know The suggestions that follow can be helpful to everyone in the family. Recognize that Asperger syndrome is not the result of poor parenting. Though the physiological reasons for Asperger syndrome are not fully understood, the syndrome is not the result of poor parenting. Parents who think their child may have AS should not react as if they are the cause. It may be difficult not to take it personally when a child does not reciprocate socially or emotionally, but appropriate counseling for parents can help. What Teachers Need to Know Most students with AS benefit from small settings, specially trained and readily available communications personnel, and highly individualized instruction, attention, and curricula. The behavior of students with AS is not willful; it is the result of their inability to understand everyday social interaction and expectations. Reprimands and punishment will not help. Get informed. Parents who think their child may have AS need to have the child professionally and sensitively evaluated. Because the syndrome is relatively new, parents whose children are diagnosed with AS might also want to get a second opinion. Children with AS do better when instruction is activity based and taught through relevant activities and across contexts, based upon the child’s individual characteristics, interests, and talents. The most effective teaching approach is a structured one-to-one format with clear and concise presentation of information. Students with AS benefit from additional prompts and an explicit reward for improved behavior. The teaching of skills should be embedded in activities that engage the child and are personally meaningful to them. Structure and predictability are essential; creating and presenting mini-schedules in readily accessible ways, such as through pictures, is very helpful. The student will learn better if physically comfortable in an environment that is safe, stimulating, and pleasurable. Small groups and cooperative learning groups can be beneficial. Behavior problems are best dealt with through positive support, which involves a functional behavioral assessment (FBA), and the subsequent development and implementation of an individualized support plan. Parents and other family members—who have the greatest familiarity with the child or teen—should be included in the process of assessment, curriculum planning, instruction, and monitoring. Transitions to any new school experiences or placements should be carefully planned, with assistance provided, where necessary. Younger children need to develop social and communication skills, while teens benefit from practical preparation for adulthood. Although the focus of instruction shifts as the child ages, the goal continues to be the development of skills that will be of use to children in all facets of their lives. 2 • Instant Help for Children and Teens with Asperger Syndrome Childswork/Childsplay - (Childswork.com) Get support. Coping with AS is not easy. Joining support organizations and talking to other parents who have children with AS can help. Parents can also get information and support through Web sites such as O.A.S.I.S. (http://www.udel.edu/bkirby/asperger/). Create as calm and predictable a home environment and schedule as possible. This is very helpful in reducing the child’s anxiety—which, in turn, benefits everyone else in the family. Accept and allow the child’s efforts at self-soothing without criticism or interference, as long as these efforts don’t harm the child or others. Parents need to recognize that children and teens with AS see the world very differently; their odd behavior is actually an attempt at selfsoothing when they feel overwhelmed. Interfering with this behavior may result in even greater distress and anxiety. Explore different kinds of educational options. Parents need to familiarize themselves with the entire range of services available in their school district and should try to visit each possible educational placement to learn about it firsthand. They should also learn as much as possible about the placement process, as well as about model programs (public and private). Programs will ideally build upon the child’s unique strengths, interests, and needs. Learn to appreciate children for who they are. Children with Asperger syndrome simply don’t perceive, experience, or live in the world the same way other children do. Instead of focusing on differences or deficits, parents should work toward appreciating who their children are and what they have to offer. Childswork/Childsplay - (Childswork.com) Instant Help for Children and Teens with Asperger Syndrome • 3