childswork/childsplay children and teens with autism a ... childhood autism rating scale (cars), ......

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Defining the Problem Autism is a severe and lifelong developmental disability that typically appears within the first three years of the child’s life. Children with autism display specific developmental deficits, particularly in language and in social skills, along with a num- ber of other developmental abnormalities. The American Psychiatric Association Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM- IV) considers autism a Pervasive Development Disorder (PDD), a disorder that causes developmental problems in multiple areas. There are four other disorders under the cate- gory of PDD: Asperger Syndrome, Child Disintegrative Disorder, Rett’s Disorder, and PDD Not Otherwise Specified (PDD-NOS). Severely impaired social development is a major factor in diagnosing children with autism. Autistic children do not typically seek out or develop relationships with other people, but rather prefer to remain in their own private world. They do not show empathy or share their own interests or This Instant Help Chart was written by Jerilyn Famighetti Various medications have been used to control the behavioral and social abnormalities associat- ed with autism. For example, selective sero- tonin reuptake inhibitors such as Prozac have been used to relieve the repetitive behaviors that are typical of autistic children; theses drugs sometimes help reduce aggression and irritability and improve social responsiveness. Antipsychotic drugs such as clozapine (Clozaril) and risperidone (Risperdal) have also been tried and in some cases help to reduce symptoms such as withdrawal and stereotypical behavior. Some stimulants, such as Ritalin, may help the autistic child to focus and may reduce hyperactivity. All these drugs have significant side effects, and their use must be moni- tored carefully. Instant Help for Children and Teens with Autism Instant Help for Children and Teens with Autism This chart is intended to provide a summary of the critical information available on helping children and teens with autism to insure that every child gets the most appropriate and compre- hensive consideration. There is no evidence that autism is caused by psychological factors originating in either the child or the family. It is caused by a brain disor- der, which likely has a genetic basis. There are no medical tests for the disorder, and diagnosis is made by observation and elimination of other possible causes for the observed behaviors, such as physical illness, mental retardation, or deafness. As part of the evaluation, the professional will observe the child’s behavior and development and obtain a detailed developmental history from the parents and, if appropriate, from other caregivers and teachers. The professional may also adminis- ter one of several available screen- ing tests. These include: The Childhood Autism Rating Scale (CARS), which uses a 15- point scale to assess several aspects of the child’s develop- ment, including relationship to people, verbal ability, and adap- tation to change. The test can discriminate between autism and other development disorders. (Western Psychological Services) Assessing Autism About Instant Help Charts Treating Children and Teens with Autism There are many methods of treatment for the autistic child, and different methods are normal- ly used for different problem behaviors. Some treatments have empirical evidence that sup- ports their efficacy; others are supported only by case studies and qualitative evidence. Variations on behavior therapy have proved most effective in treating the behaviors that define autism. Medications, such antidepres- sants, antipsychotics, and psychostimulants, can sometimes help alleviate behavioral abnor- malities and improve social responsiveness. There is anecdotal evidence that the use of special diets and vitamins can improve some of the behavioral problems associated with autism. Treatment may also include animal or music and art therapy, as well as physical or sensory stimulation. Major treatment approaches include: Applied Behavioral Analysis, which aims to reward adaptive and prosocial behaviors while extinguishing inappropriate ones. Discrete Trial Training (also called Lovaas Therapy), where every task given to the child consists of a request to perform a spe- cific action, a response from the child, and a reaction from the therapist. This therapy is not just about correcting behaviors; it is also designed to teach skills, from basic ones, such as sleeping and dressing, to more involved ones, such as social interaction. Picture Exchange Communication Systems (PECS), developed at the Delaware Autistic Program, which helps autistic children communicate by exchanging a picture for an item or an activity that they want. Goals in Developing a Treatment Plan The goals of those treating autistic children must take into account the range of deficits common in such children—interpersonal, communicative, language, and behavioral. Treatment must address these deficits indi- vidually and collectively. Broadly speaking, the goals of treatment must be: To improve the child’s ability to commu- nicate and engage the outside world To lessen the use of stereotyped behaviors and rituals To enable the child to behave as appro- priately as possible in social situations and engage in meaningful interactions with others To minimize the occurrence of aggres- sive or dangerous behaviors that threat- en either the child or others with whom he comes in contact Scientists have not yet uncovered the biological basis of autism. They are studying a number of possible factors and interactions in brain biology, including the possibility of a genetic susceptibility to autism and the role of viruses, environmental triggers, and metabolic imbalances. Several specific brain sites and abnormalities have been identified as possibly involved in the development of autism. These include so-called Fragile X syndrome and Angelman’s syndrome. A number of others are also being investigated. All researchers are agreed that autism is caused by pervasive brain dysfunction. (continued on p. 2) 4 Instant Help for Children and Teens with Autism The Brain and Autism Pivotal Response Treatment (PRT), which is a naturalistic intervention model produc- ing positive changes in critical behaviors, leading to generalized improvement in communication, social, and behavioral areas. Rather than target individual behav- iors one at a time, PRT targets pivotal areas of development, such as motivation, responsiveness to multiple cues, self-man- agement, and social initiations. Floor Time, developed by child psychiatrist Stanley Greenspan, which uses play therapy techniques to increase the interac- tion of a child and an adult through six stages of emotional development. Social Stories, developed by Carol Gray, which helps a child recognize feelings, points of view, and expected responses. The stories, written in the first person and present tense, are written to a child’s spe- cific needs and can incorporate pictures, photographs, and music. Sensory Integration Therapy, which treats children who are hypo- or hyperreactive to sensory input by helping the child recog- nize, integrate, and react appropriately to that input. Treating Children and Teens with Autism (continued) Medication and Autism Books for Kids Taking Autism to School. Andreanna Edwards, JayJo Books, 2001 My Friend with Autism: A Coloring Book for Peers and Siblings. Beverly Bishop and Craig Bishop, Future Horizons, 2003 Russell Is Extra Special: A Book about Autism for Children. Charles A. Amenta, Magination Press, 1992 Books for Parents Autism: Handle with Care. Gail Gillingham, Tacit Publishing, 2001 A Slant of Sun: One Child’s Courage. Beth Kephart, Harper Perennial, 1999 Autism Spectrum Disorders: The Complete Guide to Understanding Autism, Asperger’s Syndrome, Pervasive Developmental Disorder, and Other ASDs. Chantal Sicile- Kira and Temple Grandin, Perigee, 2004 Books for Professionals Addressing the Challenging Behavior of Children with High-Functioning Autism/Asperger Syndrome in the Classroom. Rebecca A. Moyes, Jessica Kingsley Publishers, 2002 Autism: Nature, Diagnosis, and Treatment. Geraldine Dawson (Ed.), Guilford Publications, 1989 Assessing and Treating Infants and Young Children with Severe Difficulties in Relating and Communicating. Stanley I. Greenspan et al, Zero to Three Publications,1997 Activity Schedules for Children with Autism: Teaching Independent Behavior (Topics in Autism). Lynn E. McClannahan, Ph.D., and Patricia J. Krantz, Woodbine House, 1999 Resources for Helping Children and Teens with Autism The Checklist for Autism in Toddlers (CHAT), developed in the early 1990s to evaluate the possibility of autism in chil- dren as young as 18 months. The check- list has two sections; one is completed by the parents and the other by the child’s pediatrician. The parents’ sections asks, for example, whether the child enjoys interpersonal games, such as peek-a- boo, or points out to the parent interest- ing things in the environment. (available for download at www.firstsigns.org) The Social Communication Questionnaire, which is used in children ages four and up to evaluate communica- tion and social skills. (Western Psychological Services) The Screening Test for Autism in Two- Year-Olds, which is being developed at Vanderbilt University and which uses direct observation to evaluate toddlers. Assessing Autism (continued) (continued on p. 4) (continued on p. 4) Published by Childswork/Childsplay © 2005 Childswork/Childsplay 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 Autism A ... Childhood Autism Rating Scale (CARS), ... (PECS), developed at the Delaware Autistic ... self-man-agement, and social initiations

Defining the ProblemAutism is a severe and lifelong developmental disability thattypically appears within the first three years of the child’s life.Children with autism display specific developmental deficits,particularly in language and in social skills, along with a num-ber of other developmental abnormalities.The American Psychiatric Association Diagnostic andStatistical Manual of Mental Disorders, Fourth Edition (DSM-IV) considers autism a Pervasive Development Disorder(PDD), a disorder that causes developmental problems inmultiple areas. There are four other disorders under the cate-gory of PDD: Asperger Syndrome, Child DisintegrativeDisorder, Rett’s Disorder, and PDD Not Otherwise Specified(PDD-NOS).Severely impaired social development is a major factor in diagnosing children with autism. Autisticchildren do not typically seek out or develop relationships with other people, but rather prefer toremain in their own private world. They do not show empathy or share their own interests or

This Instant Help Chart was written byJerilyn Famighetti

Various medications havebeen used to control thebehavioral and social

abnormalities associat-ed with autism.

For example,selective sero-tonin reuptakeinhibitors such

as Prozac havebeen used to relieve the repetitivebehaviors that are typical of autisticchildren; theses drugs sometimeshelp reduce aggression and irritabilityand improve social responsiveness.Antipsychotic drugs such as clozapine(Clozaril) and risperidone (Risperdal)have also been tried and in somecases help to reduce symptoms suchas withdrawal and stereotypicalbehavior. Some stimulants, such asRitalin, may help the autistic child tofocus and may reduce hyperactivity.All these drugs have significant sideeffects, and their use must be moni-tored carefully.

Instant Help forChildren and Teens with Autism

Instant Help forChildren and Teens with Autism

This chart is intended to provide asummary of the critical informationavailable on helping children and teenswith autism to insure that every childgets the most appropriate and compre-hensive consideration.

There is no evidence that autism iscaused by psychological factorsoriginating in either the child or thefamily. It is caused by a brain disor-der, which likely has a genetic basis.There are no medical tests for thedisorder, and diagnosis is made byobservation and elimination of otherpossible causes for the observedbehaviors, such as physical illness,mental retardation, or deafness.

As part of the evaluation, theprofessional will observe the child’sbehavior and development andobtain a detailed developmentalhistory from the parents and, ifappropriate, from other caregiversand teachers.

The professional may also adminis-ter one of several available screen-ing tests. These include:

The Childhood Autism RatingScale (CARS), which uses a 15-point scale to assess severalaspects of the child’s develop-ment, including relationship topeople, verbal ability, and adap-tation to change. The test candiscriminate between autism andother development disorders.(Western Psychological Services)

Assessing Autism

About Instant Help Charts

Treating Children and Teenswith AutismThere are many methods of treatment for theautistic child, and different methods are normal-ly used for different problem behaviors. Sometreatments have empirical evidence that sup-ports their efficacy; others are supported onlyby case studies and qualitative evidence.Variations on behavior therapy have provedmost effective in treating the behaviors that

define autism. Medications, such antidepres-sants, antipsychotics, and psychostimulants,can sometimes help alleviate behavioral abnor-malities and improve social responsiveness.There is anecdotal evidence that the use ofspecial diets and vitamins can improve some ofthe behavioral problems associated withautism. Treatment may also include animal ormusic and art therapy, as well as physical orsensory stimulation.Major treatment approaches include: Applied Behavioral Analysis, which aims to

reward adaptive and prosocial behaviorswhile extinguishing inappropriate ones.

Discrete Trial Training (also called LovaasTherapy), where every task given to thechild consists of a request to perform a spe-cific action, a response from the child, anda reaction from the therapist. This therapyis not just about correcting behaviors; it isalso designed to teach skills, from basicones, such as sleeping and dressing, tomore involved ones, such as socialinteraction.

Picture Exchange Communication Systems(PECS), developed at the Delaware AutisticProgram, which helps autistic childrencommunicate by exchanging a picture foran item or an activity that they want.

Goals in Developing a Treatment PlanThe goals of those treating autistic childrenmust take into account the range of deficitscommon in such children—interpersonal,communicative, language, and behavioral.Treatment must address these deficits indi-vidually and collectively. Broadly speaking,the goals of treatment must be: To improve the child’s ability to commu-

nicate and engage the outside world To lessen the use of stereotyped

behaviors and rituals To enable the child to behave as appro-

priately as possible in social situationsand engage in meaningful interactionswith others

To minimize the occurrence of aggres-sive or dangerous behaviors that threat-en either the child or others with whomhe comes in contact

Scientists have not yet uncovered the biological basis of autism. They are studying a number ofpossible factors and interactions in brain biology, including the possibility of a genetic susceptibilityto autism and the role of viruses, environmental triggers, and metabolic imbalances. Severalspecific brain sites and abnormalities have been identified as possibly involved in the development

of autism. These include so-called Fragile X syndrome and Angelman’s syndrome. A number ofothers are also being investigated. All researchers are agreed that autism is caused by pervasive

brain dysfunction.

(continued on p. 2)

4 • Instant Help for Children and Teens with Autism

The Brain and Autism

Pivotal Response Treatment (PRT), whichis a naturalistic intervention model produc-ing positive changes in critical behaviors,leading to generalized improvement incommunication, social, and behavioralareas. Rather than target individual behav-iors one at a time, PRT targets pivotalareas of development, such as motivation,responsiveness to multiple cues, self-man-agement, and social initiations.

Floor Time, developed by child psychiatristStanley Greenspan, which uses playtherapy techniques to increase the interac-tion of a child and an adult through sixstages of emotional development.

Social Stories, developed by Carol Gray,which helps a child recognize feelings,points of view, and expected responses.The stories, written in the first person andpresent tense, are written to a child’s spe-cific needs and can incorporate pictures,photographs, and music.

Sensory Integration Therapy, which treatschildren who are hypo- or hyperreactive tosensory input by helping the child recog-nize, integrate, and react appropriately tothat input.

Treating Children and Teenswith Autism (continued)

Medication and Autism

Books for KidsTaking Autism to School. AndreannaEdwards, JayJo Books, 2001My Friend with Autism: A Coloring Book forPeers and Siblings. Beverly Bishop andCraig Bishop, Future Horizons, 2003Russell Is Extra Special: A Book aboutAutism for Children. Charles A. Amenta,Magination Press, 1992

Books for ParentsAutism: Handle with Care. Gail Gillingham,Tacit Publishing, 2001A Slant of Sun: One Child’s Courage. BethKephart, Harper Perennial, 1999Autism Spectrum Disorders: The CompleteGuide to Understanding Autism, Asperger’sSyndrome, Pervasive DevelopmentalDisorder, and Other ASDs. Chantal Sicile-Kira and Temple Grandin, Perigee, 2004

Books for ProfessionalsAddressing the Challenging Behavior ofChildren with High-FunctioningAutism/Asperger Syndrome in theClassroom. Rebecca A. Moyes, JessicaKingsley Publishers, 2002Autism: Nature, Diagnosis, and Treatment.Geraldine Dawson (Ed.), GuilfordPublications, 1989

Assessing and Treating Infants and YoungChildren with Severe Difficulties in Relatingand Communicating. Stanley I. Greenspanet al, Zero to Three Publications,1997Activity Schedules for Children with Autism:Teaching Independent Behavior (Topics inAutism). Lynn E. McClannahan, Ph.D., andPatricia J. Krantz, Woodbine House, 1999

Resources for Helping Children and Teens with Autism

The Checklist for Autism in Toddlers(CHAT), developed in the early 1990s toevaluate the possibility of autism in chil-dren as young as 18 months. The check-list has two sections; one is completed bythe parents and the other by the child’spediatrician. The parents’ sections asks,for example, whether the child enjoysinterpersonal games, such as peek-a-boo, or points out to the parent interest-ing things in the environment. (availablefor download at www.firstsigns.org)

The Social CommunicationQuestionnaire, which is used in childrenages four and up to evaluate communica-tion and social skills.(Western Psychological Services)

The Screening Test for Autism in Two-Year-Olds, which is being developed atVanderbilt University and which usesdirect observation to evaluate toddlers.

Assessing Autism (continued)

(continued on p. 4) (continued on p. 4)

Published by Childswork/Childsplay

© 2005 Childswork/Childsplay

Childswork/Childsplay

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

Page 2: Childswork/Childsplay Children and Teens with Autism A ... Childhood Autism Rating Scale (CARS), ... (PECS), developed at the Delaware Autistic ... self-man-agement, and social initiations

Working with autistic children represents a great challenge. The Treatment and Education ofAutistic and Related Communication Handicapped Children (TEACCH) program offers numer-ous suggestions for teachers of autistic children that help the child feel as comfortable as pos-sible in the classroom and thus facilitate maximum learning. Here are a few:

Organize the classroom to minimize distraction; have specific areas for specific activities,and make sure the materials relevant to each area are kept nearby.

Plan a reliable, predictable schedule. Because autistic children often have problems with sequences, knowing what they should be doingand what is coming next can be helpful.

Make directions for activities short, specific, and sequential.

Learn what reinforcements work for each child, and use them to influence behavior. These can be activities, food, toys, or tokens that canbe accumulated and traded in later. Punishment, or negative reinforcement, is not likely to be effective when a child does not meet yourexpectations.

Avoid vague statements or questions that demand abstract answers. Talk about specific actions that you did or did not like, and askquestions that have short, specific responses: not “Why did you do that?” but “Did you do that because you didn’t want to stop what youwere doing?”

Remember that autistic children may not interpret facial and postural cues appropriately, and they don’t always understand idiomaticexpressions. It’s better to use clear, precise sentences.

DO• Use concrete physical cues, such as signs and lists, to

help the child remember what he is expected to do.• Set up a safe place for the child to retreat to when

stress becomes overwhelming. Removing himself fromthe situation is sometimes the best way for the child tocope.

• Use simple, clear sentences to describe in concreteterms what you want the child to do.

• Remember that it’s okay to exclude the child fromcertain activities if he is likely to be disruptive or tootherwise impinge on what ought to be a special dayfor a sibling, such as a birthday party.

• Try writing a journal or finding some other outlet foryour feelings.

• Establish a working relationship with teachers or care-givers and encourage the exchange of information ona regular basis.

• Consider having the child wear some form of identifi-cation, such as a bracelet, that contains essentialinformation in case he wanders off and becomes lost.

DON’T• Use complicated sentences that convey lots of infor-

mation. Giving information in a simple, sequential wayas it is needed will help the child understand yourmeaning.

• Deny the reality of the negative emotions otherchildren may have toward the autistic child or makethose children feel guilty for their feelings.

• Expect the autistic child to be able to “read” your facialexpression or body language. Such social cues areusually lost on autistic children.

• Speak for the child when someone asks him a directquestion, unless necessary.

• Try to take over aspects of his life that he canaccomplish for himself.

• Talk about the child in front of him as if he weren’tthere.

2 • Instant Help for Children and Teens with Autism

The first things parents need to understand is that their child’s disability is not their fault; there is noevidence that there is any psychological aspect to the development of autism, and the disability is inno way the result of inadequate parenting.Parenting an autistic child is extremely difficult. In addition to constantly supervising and trying todeal with the needs of their child, parents must deal with their own frustration, disappointment, andanger, as well as the emotions of the child’s siblings and other relatives and the curiosity and lack ofunderstanding of outsiders. The strain on the parents, both individually and as a couple, isenormous.Help is available, and parents must know how to get help for their child. Federally funded programs are available for children younger thanthree and the Autism Society of America provides referrals to such programs around the country. For those ages 3–21, the federal govern-ment mandates that special education programs that address the special and wide-ranging needs of the child be made available through thepublic schools.In addition to arranging for appropriate educational supports, parents can take some concrete steps to help meet their own needs as well asthe child’s: Parents should make time for themselves on a regular basis. Even short periods each day will make a big difference. Parents should network with other families in similar situations, for support and for ideas on coping. Support is also available for siblings

of autistic children. Parents should help siblings form reasonable expectations by explaining what is happening in terms they can understand: “I know it’s

frustrating to you when your sister doesn’t answer you, but she can’t.” Sometime siblings can be taught simple techniques for engagingthe autistic child, which will smooth their interactions.

Since autistic children are unpredictable and can get into danger in the home, parents should take appropriate safety precautions: lockingdoors, windows, and cabinets; covering electrical outlets; locking away matches and household cleansers, and so on.

Professionals who work with autistic children and their families may be able to offer additional suggestions.

Instant Help for Children and Teens with Autism • 3

Children with autism appear to havea higher than normal risk for certainco-existing conditions, includingFragile X syndrome (which causesmental retardation), tuberous sclero-sis (in which tumors grow on thebrain), epileptic seizures, Tourettesyndrome, learning disabilities, andattention deficit disorder.

Children whose language skillsregress early in life, usually beforethe age of 3, appear to be at risk ofdeveloping epilepsy or seizure-likebrain activity.

During adolescence, some childrenwith autism may become depressedor experience renewed behavioralproblems.

Many autistic children have difficultysleeping. Research suggests thatwhen they are helped to sleep better,through a behavioral program and/orwith medication, their behavior alsoimproves.

As part of the Children’s Health Actof 2000, there are now eight dedicat-ed research centers across thecountry that have been establishedas “Centers of Excellence in AutismResearch.” They are investigatingthe critical areas of diagnosis, earlydetection, prevention, and treatment.

Fast Facts The Dos and Don’ts of CommunicatingDefining the Problem (continued)

pleasures, either verbally or nonverbally. Theyoften avoid eye contact and touch and seemto live in isolation from the world around them.Another significant feature is their languagelimitation. Autistic children often fail to developany verbal skills and even if they have someverbal ability, they often do not use languageto communicate but instead emit nonsensesyllables or use words in an idiosyncratic fash-ion. They rarely engage in social conversationbut may repeat syllables endlessly, scream, orrepeat only what has been said to them.Inappropriate, repetitive, or aggressive behav-iors are particularly troubling to parents,because these call attention to the child asstrange or even frightening. These behaviorscan include hand flapping, rocking, headbanging and other forms of self-injury, andfinger snapping.Autistic children have limited tolerance forchange in their environments and significantlylimited interests or activities. There may alsobe unusual sensitivity or reactions to physicalsensations, such as temperature or smell. Inits most extreme form, autism can cause achild to exhibit aggressive or self-injuriousbehaviors. Children with milder forms can

function in society, although the disordercannot be cured. Autism may co-occur withother disorders, including mental retardationand epilepsy.Autism is rare, occurring approximately fifteentimes in 10,000 births, and affects four timesas many boys as girls. Over the last decade,however, there has been a dramatic, unex-plained increase in the diagnosis of autism inmany states (e.g., a 440% increase inCalifornia and a 900% increase in New York),causing parents and scientists to look for envi-ronmental causes or changes in childhoodvaccines. To date, researchers have not beenable to identify a clear explanation for theincrease in the diagnosis of autism.Accurate and early diagnosis, preferablybefore the age of three, is essential if treat-ment is to have the maximum impact. Mostchildren who do not receive early interventionwill at some point require custodial care. It isimportant to emphasize, however, that treat-ment can almost always help autistic childrenif it is begun early enough.

What Teachers Need to Know

What Parents Need to Know

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