childswork/childsplay children and teens with …...freaks, geeks and asperger syndrome: a user...

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Defining the Problem The American Psychiatric Association Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision describes the essential features of Asperger syn- drome (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 consid- erably, as do the individuals who are diagnosed with it. Although the DSM-IV classifies Asperger syndrome as a per- vasive 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 “professor- like” 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 obses- sively 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 This Instant Help Chart was written by Corinna Fales Published by Childswork/Childsplay There is no approved medication for the symptoms of AS. However, medica- tions do exist that may help with some of the co- existing condi- tions. These include those used for attention deficit disorders (such as psychostimulants), for anxiety (anti-anxiety medications), and for severe obsessive behav- ior and depression (antidepres- sants). The complex nature of this disorder, along with the despera- tion of parents, leads some med- ical professionals to experiment with different combinations of drugs to handle different symp- toms 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. 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. Books for Parents Parenting Your Asperger Child: Individualized Solutions for Teaching Your Child Practical Skills. Alan Sohn and Cathy Grayson, Penguin Group, 2005 The Many Faces of Asperger’s Syndrome. Maria Rhode and Trudy Klauber, (Eds.), Tavistock Clinic Series, 2004 Pretending to Be Normal: Living with Asperger’s Syndrome. Liane Holliday Wiley, Jessica Kingsley Publishers Ltd, 1999 The OASIS Guide to Asperger Syndrome. Patricia Romanowski Bashe, Crown Publishers, 2001 Asperger’s Syndrome and Difficult Moments: Practical Solutions for Tantrums, Rage and Meltdowns. Brenda Smith Myles and Jack Southwick, Autism Asperger Publishing Company, 2005 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 Alternative Treatments for Children within the Autistic Spectrum. Deborah Golden Alecson, McGraw-Hill, 1999 Can I Tell You About Asperger Syndrome?: A Guide for Friends and Family. Jude Welton, Jessica Kingsley Publishers Ltd, 2004 Books for Children and Teens Freaks, Geeks and Asperger Syndrome: A User Guide to Adolescence. Luke Jackson, 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. Books for Professionals 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 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 Keep In Mind Instant Help for Children and Teens with Asperger Syndrome Instant Help for Children and Teens with Asperger Syndrome © 2005 Childswork/Childsplay 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. 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, teach- ers, 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 pri- marily on empirical observation. Cultural biases should also be considered in doing an assessment of children from a minority background. Assessing AS About Instant Help Charts 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. An effective treatment program builds on the child’s interests and offers a predictable sched- ule. Interpersonal and communication skills are taught as a series of simple steps, in highly structured activities, and with regular reinforce- ment. 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 appropri- ate 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 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 nonver- bal 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 Medication 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 differ- ences associated with Asperger syndrome should make it easier to diagnose and treat this disorder. The Brain and Asperger Syndrome (continued on p. 2) 4 Instant Help for Children and Teens with Asperger Syndrome Resources for Helping Children and Teens with Asperger Syndrome Childswork/Childsplay A Brand of The Guidance Group 1.800.962.1141 www.guidance-group.com

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Page 1: Childswork/Childsplay Children and Teens with …...Freaks, Geeks and Asperger Syndrome: A User Guide to Adolescence. Luke Jackson, Jessica Kingsley Publishers Ltd, 2002 Asperger’s

Defining the ProblemThe American Psychiatric Association Diagnostic andStatistical Manual of Mental Disorders, Fourth Edition, TextRevision describes the essential features of Asperger syn-drome (AS) as “severe impairment in social interactions and arestricted repertoire of behaviors, interests and activities withno substantial delays in language, self-help skills, or curiosityabout the environment.” Current use of the term varies consid-erably, as do the individuals who are diagnosed with it.Although the DSM-IV classifies Asperger syndrome as a per-vasive 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 “professor-like” way (lacking appropriate empathy and give-and-take), have difficulty making friends, fail toinitiate or reciprocate normal sharing and affectionate behavior, and focus exclusively and obses-sively on one specific area of interest (in which they frequently exhibit exceptional skill or talentand an advanced vocabulary). They may also be extremely literal and naïve, become anxiousover any change in the usual order of things (and develop obsessive routines to re-establish their

This Instant Help Chart was written byCorinna FalesPublished by Childswork/Childsplay

There is no approvedmedication for the

symptoms of AS.However, medica-

tions do exist thatmay help withsome of the co-existing condi-tions. These

include thoseused for attention deficit disorders(such as psychostimulants), foranxiety (anti-anxiety medications),and for severe obsessive behav-ior and depression (antidepres-

sants). The complex nature of thisdisorder, along with the despera-tion of parents, leads some med-ical professionals to experimentwith different combinations ofdrugs to handle different symp-toms and behavioral problems.While this type of experimentationis understandable, there is adanger that the interactions ofsome medications can lead to aworsening of symptoms. Theobjective monitoring of a child’sbehavior should always accompanytreatment with medication.

Through everyday conversations youcan help individuals with AS to: See that there are difference choices

they can make and differentconsequences to their choices.

Recognize that there are differentways to interact with people,including negotiating, persuading,discussing, and disagreeing.

Understand that different peoplehave different ways of expressingthemselves.

See that they can predict how otherswill react to them, by understandingthe underlying rules of both verbaland nonverbal communication.

Books for ParentsParenting Your Asperger Child:Individualized Solutions for Teaching YourChild Practical Skills. Alan Sohn and CathyGrayson, Penguin Group, 2005The Many Faces of Asperger’s Syndrome.Maria Rhode and Trudy Klauber, (Eds.),Tavistock Clinic Series, 2004Pretending to Be Normal: Living withAsperger’s Syndrome. Liane HollidayWiley, Jessica Kingsley Publishers Ltd,1999The OASIS Guide to Asperger Syndrome.Patricia Romanowski Bashe, CrownPublishers, 2001

Asperger’s Syndrome and DifficultMoments: Practical Solutions for Tantrums,Rage and Meltdowns. Brenda Smith Mylesand Jack Southwick, Autism AspergerPublishing Company, 2005A Parent’s Guide to Asperger Syndromeand High-Functioning Autism: How to Meetthe Challenges and Help Your Child. SallyOzonoff et al., Guilford Press, 2002Alternative Treatments for Children withinthe Autistic Spectrum. Deborah GoldenAlecson, McGraw-Hill, 1999Can I Tell You About Asperger Syndrome?:A Guide for Friends and Family. JudeWelton, Jessica Kingsley Publishers Ltd,2004

Books for Children and TeensFreaks, Geeks and Asperger Syndrome: AUser Guide to Adolescence. Luke Jackson,Jessica Kingsley Publishers Ltd, 2002Asperger’s Syndrome, The Universe andEverything: Kenneth’s Book. Kenneth Hall,Jessica Kingsley Publishers Ltd, 2001Knowing Yourself, Knowing Others.Barbara Cooper & Nancy Widdows. InstantHelp Publications, 2005.The Social Success Workbook. BarbaraCooper & Nancy Widdows. Instant HelpPublications, 2005.

Books for ProfessionalsAddressing the Challenging Behavior ofChildren with High-Functioning Autism: AGuide for Teachers and Parents. RebeccaA. Moyes, Jessica Kingsley Publishers Ltd,2002Asperger Syndrome: What Teachers Needto Know. Matt Winter, Jessica KingsleyPublishers Ltd, 2003Asperger Syndrome. Ami J.M. Klin et. al,(Eds.), Guilford Press, 2000Asperger Syndrome and Adolescence:Helping Preteens and Teens Get Ready forthe Real World. Teresa Bolick, PhD, FairWinds Press, 2001

Keep In Mind

Instant Help forChildren and Teens with Asperger Syndrome

Instant Help forChildren and Teens with Asperger Syndrome© 2005 Childswork/Childsplay

This chart is intended to provide asummary of the critical informationavailable on helping children and teenswith Asperger syndrome to insure thatevery child gets the most appropriateand comprehensive consideration.

Since children with AS differ widely andit is important to build treatmentprograms based upon their specificskills, interests, and abilities, directobservation of the child is particularlyimportant in assessment. In addition,assessment should include:

Interviews with the parents, teach-ers, and child

Standardized behavior rating scalesgiven to parents and teachers, suchas The Social ResponsivenessScale (Western PsychologicalServices)

A review of school records andreports

Tests to review intellectual abilityand academic achievement

Additional assessment might alsoinclude:

Social CommunicationQuestionnaire (WesternPsychological Services)

Asperger’s Syndrome DiagnosticScale(Autism/Asperger Publishing Co.)

Gilliam Asperger’s Disorder Scale(Pro-Ed)

Treatment needs are best determinedby an interdisciplinary team with inputfrom parents and teachers, focusing pri-marily on empirical observation. Culturalbiases should also be considered indoing an assessment of children from aminority background.

Assessing AS

About Instant Help Charts

Counseling Childrenand Teens with ASThere is no single best treatment for childrenwith AS, who may seem more different fromeach other than alike. Research shows thateffective treatment is based upon a thoroughassessment of each child and should be highlyindividualized—tailored to the child’s particularstrengths, needs, and abilities.

An effective treatment program builds on thechild’s interests and offers a predictable sched-ule. Interpersonal and communication skills aretaught as a series of simple steps, in highlystructured activities, and with regular reinforce-ment. Social skills training may be combinedwith cognitive behavioral therapy, medicationfor co-existing conditions, and other forms ofcounseling.Specific skills are taught through verbal andexplicit communication and include: Breaking down tasks, skills, and appropri-

ate behavior into a series of simple andcomplete steps—essentially, rulesequences—that are rehearsed until theybecome rote to the child and available fordealing with social situations (from personalinteraction to taking public transportation)

Encouragement of self-evaluation andconsideration of alternatives

Development of specific problem-solvingstrategies

Cultivation of social awareness Regular reinforcement of behavior

Goals in Developing a Treatment PlanThe primary goal of any treatment plan is topromote and enhance communication andsocial competence, which includes: Teaching the child how to navigate

social situations Strengthening ability to interpret nonver-

bal 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

Medication and Asperger Syndrome

Some research suggests that people with AS have neuronal abnormalities in the prefrontal lobe andthat 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 ofsuch symptoms as obsessive behaviors and social difficulties. One study showed reducedactivation in the fusiform gyrus, the area of the cerebral cortex where recognition of facestakes 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 personswith AS to inhibit repetitive thoughts, speech and actions. Continued research in the brain differ-

ences associated with Asperger syndrome should make it easier to diagnose and treat this disorder.

The Brain and Asperger Syndrome(continued on p. 2)

4 • Instant Help for Children and Teens with Asperger Syndrome

Resources for Helping Children and Teens with Asperger Syndrome

Childswork/Childsplay

A Brand of The Guidance Group1.800.962.1141www.guidance-group.com

Page 2: Childswork/Childsplay Children and Teens with …...Freaks, Geeks and Asperger Syndrome: A User Guide to Adolescence. Luke Jackson, Jessica Kingsley Publishers Ltd, 2002 Asperger’s

Most students with AS benefit from small settings, specially trained and readily availablecommunications 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 understandeveryday social interaction and expectations. Reprimands and punishment will not help.

Children with AS do better when instruction is activity based and taught through relevantactivities 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, isvery helpful.

The student will learn better if physically comfortable in an environment that is safe, stimulating, and pleasurable. Small groups and coop-erative learning groups can be beneficial.

Behavior problems are best dealt with through positive support, which involves a functional behavioral assessment (FBA), and the subse-quent 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 assess-ment, 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. Althoughthe 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 allfacets of their lives.

DON’T

• Give complicated directions.

• Scold, punish, or yell.

• Try to force affectionate behavior.

• Label, mock, or tease.

• Expect “normal” conversation.

DO• Break down into clear, short steps what the

child needs to do.

• Set limits and provide clear steps for managingbehavior.

• Accept what the child can tolerate.

• Recognize that the child sees the world verydifferently and is easily overwhelmed.

• Engage children and teens in areas where theyshow interest.

2 • Instant Help for Children and Teens with Asperger Syndrome

What Teachers 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, thesyndrome is not the result of poor parenting. Parents who think their child may have ASshould not react as if they are the cause. It may be difficult not to take it personally whena child does not reciprocate socially or emotionally, but appropriate counseling for parentscan help.

Get informed.Parents who think their child may have AS need to have the child professionally and sensitively evaluated. Because the syndrome isrelatively new, parents whose children are diagnosed with AS might also want to get a second opinion.

Get support.Coping with AS is not easy. Joining support organizations and talking to other parents who have children with AS can help. Parents canalso 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 thechild 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 self-soothing 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 eachpossible educational placement to learn about it firsthand. They should also learn as much as possible about the placement process, aswell 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 offocusing on differences or deficits, parents should work toward appreciating who their children are and what they have to offer.

Instant Help for Children and Teens with Asperger Syndrome • 3

According to the Asperger SyndromeCoalition of the United States, theonset of AS is later than what is typi-cal in autism, or at least it is recog-nized later. A large number of childrenare diagnosed after the age of 3, withmost diagnosed between the ages of5 and 9.

Asperger syndrome is a relatively newdiagnosis, first appearing in the DSM-IVin 1994; its definition was reworded inthe 2000 Text Revision. There is stillsome debate among professionalsabout its proper classification.

Individuals with AS are sometimes mis-diagnosed as having oppositional defi-ant disorder (because of their failure tofollow instructions and strong—evenviolent—reaction to others), attentiondeficit disorder (because they often

have an attention deficit), obsessive-compulsive disorder (because of theirobsessive behaviors), PDD-NOS (per-vasive developmental disorder-not oth-erwise specified), or even schizophre-nia (because of their social deficits andodd behavior).

In addition to an attention deficit, indi-viduals with AS are prone to general-ized anxiety, specific phobias, and lowself-esteem. They are also vulnerableto depression, especially in adoles-cence, as they become increasinglyaware that they are different.

Learning difficulties that relate to thedevelopment of fine motor skills andunderstanding language are commonin children and teens with AS.

Children with AS may also developother personality disorders, which cancomplicate the diagnosis and treat-ment.

Fast FactsThe Dos and Don’ts of Communicating

What Parents Need to Know

Defining the Problem (continued)

calm), dislike being touched (and react strong-ly), and be highly sensitive to smell, sound,color and taste (with intense likes and dislikesin these areas).Individuals with AS have inherent difficulty with“reading” the nonverbal cues that are part ofeveryday social interaction. This makes it diffi-cult for them to understand others’ feelingsand results in anxiety when they are requiredto meet the social demands of everyday life.Though the physiological basis of AS is stillnot fully understood, research shows that it isdiagnosed much more frequently in boys thanin girls and may be genetically linked. Childrendo not outgrow the syndrome, nor is there anyknown cure for it, but children who receiveeffective treatment—the earlier the better—can learn to cope with it.

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