DOCUMENT RESUME

ED 396 464 EC 304 843

AUTHOR Hughes, Carolyn; And OthersTITLE Peer Tutor Handbook. A Curriculum for High School

Students Serving as Peer Tutors to Students withSpecial Needs.

INSTITUTION Vanderbilt Univ., Nashville, TN. Peabody Coll.SPONS AGENCY Tennessee Developmental Disabilities Council.PUB DATE 95

NOTE 142p.; Some pages have small, light print and may notreproduce well.

PUB TYPE Guides Classroom Use Teaching Guides (ForTeacher) (052) Tests/Evaluation Instruments (160)

EDRS PRICE MF01/PC06 Plus Postage.DESCRIPTORS Course Content; *Helping Relat!)nship; High Schools;

High School Students; Peer Relationship; *PeerTeaching; Role Models; *Secondary School Curriculum;*Special Needs Students; *Tutorial Programs

ABSTRACTThis curriculum is designed for a high school course

in which nondisabled students receive training and act as peer tutorsand role models for peers with special needs for one class periodeach day. An introductory course description covers peer tutorqualifications and requirements, examples of activities with peers,and benefits to peer tutors. A section on the tutor's role offersguidelines on motivation, the tutorial relationship, techniques oftutoring, setting goals, and suggestions for getting to know thetutee. The next section offers ideas and an activity for trainingpeer tutors. A section of course-related forms includes tutorscheeule forms, the record of tutor experiences, tutor evaluationforms, and observation schedules. The following section introducesspecial education services and covers such topics as current trends,legislation, definitions of key terms, discipline, and misconceptionsabout individuals with disabilities. The subsequent six sections eachaddress a specific disability area with a variety of materials whichinclude a general information fact sheet, a list of commonmisconceptions, a rample case study, and relevant article reprints.The six disabilities include: (1) mental retardation, (2) learning

disabilities, (3) visual impairments, (4) hearing impairments, (5)

speech and language disorders, and (6) autism. (Contains a total of

70 references.) (DB)

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ReproducLions supplied by EDRS are the best that can be madefrom the original document.

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tmtit1,./k4iDnor(-) t\,

A Curriculum for HighSchool Students Serving asPeer Tutors to Students with

Special NeedsU.S DEPARTMENT OF EDUCATION

Off ce of Edocal.onat Reseatch and Improver leo.EDUCATIONAL RESOURCES INFORMATION

CENTER (ERIC)This document has been reproduced asreceived from the person or organizationoriginating it

O Minor changes have been made toimprove reproduction quality

Points of view or opinions stated in thisdocument do not necessarily representofficial OERI position or policy

Carolyn Hughes, Ph.D.Sarah Lorden, Carol Guth

Stacey Scott, Judith PresleyPeabody College

of Vanderbilt UniversityPERMISSION TO REPRODUCE AND

DISSEMINATE THIS MATERIAL

.s%..".

HAS B EN GRANTED BY, 1995TO THE EDUCATIONAL RESOURCES

INFORMATION CENTER ;ERIC)

This manual was prepared with support from the Project Supporting Inclusion of Studentswith Disabilities in Public School Classrooms, funded by the Tennessee DevelopmentalDisabilities Council

BEST COPY AVAILABLE

TUTOR HANDBOOK

I. Course Description

The Tutor's Role

III. Sample Activities and Lesson Plans

IV. Evaluation Forms

V. Introduction to Special EducationServices

VI. Mental Retardation

VII. Learning Disabilities

VIII. Visual Impairments

IX. Hearing Impairments

X. Speech and Language Disorders

XI. Autism

References*

Bakke, B. L. (1990). Self-injury: Answers to questions for parents, teachers, andcaregivers. [Brochure]. Institute for Disabilities Studies, University of Minnesota;Minneapolis.

Breen, C., Kennedy, C., & Haring, T. (Eds.) (1991). Social context researchproject: Methods for facilitating the inclusion of students with disabilities in integratedschool and community contexts. Santa Barbara, CA: University of California

Fulton, L., & LeRoy, C. (1994). Peer education partners. Project Rise and the SanBernadino Unified School District. San Bernardino, CA: California State University.

Hallahan, D. P., & Kauffman, J. M. (1994). Exceptional Children: Introduction toSpecial Education. Sixth Edition. Allyn & Bacon: Boston, MA.

Konner, L. (1986). I couldn't read until I was 18. Redbook, 167W.

Morgan, S. B. (1986). Early childhood autism. Changing perspectives. Journal ofChild or Adolescent Psychotherapy, 3, 3-9.

Reber, M. Autism. 407-417.

The Governor's Study Partner Program. Tennessee State Department of Education.Nashville, TN.

Wheeler, M., Rirnstidt, S., Gray, S., & DePalma, V. (1991). Facts about Autism.[Brochure]. Institute for the Study of Developmental Disabilities, Indiana Resource Centerfor Autism. Bloomington: Indiana University.

Whorton, D., Walker, D., McGrale, J., Rotholz, D., & Locke, P. (1988).Alternative Instructional Strategies for Students with Autism and Other DevelopmentalDisabilities: Peer Tutoring and Group Teaching Procedures. Austin, TX: Pro-Ed.

Also included in the handbooks are fact sheets with the following information:General Information About Specific Disabilities, from the National Information Center forChildren and Youth with Disabilities; Autism from the Autism Society of America; andCommon Misconceptions about Autcsm from W. Stone, Ph.D.

* The:, references were used for developing the curriculum for the Peer Tutoring Handbooks.

T. Course Description

Peer Tutoring Course Description

Special Education Class Description

5

Peer lutoring

Course Description: course # SST5800Y(F)(S)

This course is designed to enable students to develop peer relationships while acting as peer tutors andP. ,/e role models for students witlii special needs at McGavock High School. The tutors will receive instructiona. various types of disabilities and learning problems, instnictional techniques for students with disabilities,and ideas on how to help increase the social skills, interactions, and participation of their peers with special needsn the day to day activities at McGavock High School and beyond.

Qualifications:

Students must have:an interest in the peer tutoring program

. an adequate GPAgood attendancegrade levels 9-12a recommendation from a teacher or counselor

Requirements:

To be taken as an elective:1/2 credit per semester1 class period per day

Students acting as peer tutors will report daily to an assigned teacher of one of the self-contained classesfor students with disabilities. The peer tutor, teacher, and tutee will discuss and decide on an activity in whichthe tutor and tutee will participate. The tutor will be required to keep a daily or weekly journal, complete aweekly written assignment, and complete several reading assignments.

Examples of activities for the peers:

o visiting the library to read the paper, magazines, or other books - working on library skills, basicreading skills, and social integration and interaction

o eating lunch together working on table manners, eating skills, social integration and interaction

o academics in the classroom working on math, reading, or money skills, social interaction,listening skills, writing skills, conversational skills

Peer tutors may benefit from this program in the following ways:

o they may develop teaching and study sidllso they will practice academic and social skillso they become advocates and learn valuable advocacy skillso they are provided with realistic career exploration for education or human service profession, ando they gain an impressive extracurricular activity for college applications or resumes

General program information:

This program has been approved by the Tennessee Department of Education. McGavock High School willbe the first Metro school to participate in the peer tutoring program. The program is designed as a step towardsthe inclusion and integration of all students into the regular day to day activities of McGavock High School.

. cipatin Faculty: Cheryl Gentry, Bryan Campbell, & Marilee Dye

BEST COPY AVAILABLE

Team Leader: Gladys Henderson

SPECIAL EDUCATION CLASS DESCRIPTIONS

Ms. Henderson's Class:

Ms. Dye's Class:

Ms. Gentry's Class:

Mr. Campbell's Class:

The students in Ms. Henderson's class are working on a varietyof skills including, academic, vocational and social skills. Allof the students have good communication skills. Some of thestudents in Ms. Henderson's clas's take classes outside of herclass or are mainstreamed. Many of her students have jobsoutside of school.

The students in Ms. Dye's class work on vocational, academicand social skills. The students in her class have goodcommunication skills and also take classes in the mainstream.

The students in Ms. Gentry's class are not as "high functioning"as in Ms. Henderson's and Ms. Dye's classes. The skills thatthe students in her class focus on are vocational and social.some of the students in her classroom communicate using signlanguage and by other non-traditional means.

The students in Mr. Campbell's class have Autism. The skillsthat they work on include, social skills, communication skills,and some academic skills. The students in this class use non-traditional means of communication.

II. The Tutor's Role

o Excerpts from the Governor's Study Partner Program fromthe Tennessee Department of Education

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TUTOR'S MANUAL

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Tennessee State Department of Education

9

INTRODUCTION

The students being tutored in this program often feel :locked out ofthe learning process. One reason for this feeling is not knowinglactw to tackle an assignment. Good study habits are the mostiMportant key to learning.

On the following pages you will find suggestions and examples fordeveloping study skills. These suggestions are not to preach orteach; most of your study partners have heard it all before. Theyhave not, however, learned or practiced good study habits. Usingthese skills as you work together may be your biggest contribu-Eionto your study partner's increased success in school.

Leaning is an active process. We learn through watching, listening,thinking, reading, practicing and doing. Your positive attitude andpositive behavior will be more important than anything you cansay. You cannot study for your partner, but you can guide thestudying process and set an example.

Good News! Your study skills might be strengthened, too.

Thatt© IThpBewarel Doing homework is not necessarily the same as studying.

Tips for getting the most out of homework are included in this section,but your goals are bigger than that. Spending your tutoring time on

completing homework alone would be like choosing to eat onedoughnut instead of owning the bakery.

A

The M work is a major reason for success in school and laterin life. The lack of it is a major reason for failure. Many tutors havereported this to me with great alarm "my study partner doesn'tdare." Several things should be said at this point. Some tutoi tips:

I don't care often is a cover-up for I don't know how:Struggling students get further and further behind until They reacha point that they do not know the question to ask much less theanswer. They act as if I don't care.

Motivation is caught more than it is taught.. Yourmotivation may rub off. Your study partner's interest in schoolwork rnay be increased because of your interest in him as aperson.

Relationships have a lot to do with our own reason to bemotivated. Think briefly about your own school experience. Whatteachers are you most anxious to please? When do your put extraeffort into your work? In what classes do you care more about yourperformance? How much did your answers have something to dowith your relationship with your teachers? Probably a lot!

%1 Goals also play a big part in mOtivation. They keep us ontrack going in a certain direction. Your study partner may havevery few if any goals. Thus, he or she may have little or nodirection and motivation more about this when we talk about goalsetting.

The M work is greatly connected to ones interest. Weactually work harder in areas we like. While I am highly motivatedabout football, driving many hours to see a game, I would not walkacross th e. street to see a hockey match but many would! Findargas of interest that your study partner may have. If there ismotivation in one area there is hope for motivation in another. Icould learn to be motivated about hockey. A previous tip may alsoapply ; I don't know may be a reason I don't care about hockey.

The R word is the key to being a successful tutor. It requireswork, sweat and even on occasion tears. This is the reason theG.S.RP. requires a one on one tutorial relationship. If "Sam" has a;different tutor each time they meet it is very difficult for any

.7"b9nding" to take place. "Sam" needs more than a tutorial poolhe needs one individual with whom he can become a friend.

Irma IN7©RIAL Ru llJ

Be a friend first, tutor second and never the teacher.

TIPS FOR THE RELATIONSHIPGet to 'Know Sam. Find out his interest/likes, dislikes/hobbies.

Use the interest inventory to get you thinking. It is not designed foryou to hand out to Sam saying "Fill ens out, I'll be back to get it in10 minutes."

ckL, Keep in contact witll Sam This is not tutorial time but in thehall, at lunch, or on thr, bus. If Sam says, "I can't come to our studythis time, Aunt Matilda fell out of a barn over at Bucksnort andbroke her big toe. We have to go see her." What should you saywhen you see Sam again? (Answer "How's Aunt Matilda's toe?")

Be patient with Sam Your study partner may not most likelyreact as quic...-cly as you do. Learning may not be as easy for Sam.

His learning may be distracted due to other problems in his life.This will require work on your part unless you are one of the luckyones born with a lot of it. It will be worth the effort yourcharacter may be strengthened.

ctt, Be positive with Sam Show him what is riQht with his workHow can you say you've got this wrong.without saying you've gotit wrong? ."Let's do it again" is a good statement. Show progressthat is being made praise when success happens. Sam has hadenough negatives. Positive reinforcement will help your studypartner to "feel good" I can will lead to I DID! Beware that thenegative also works I can fail may lead to I DID FAIL!

Always exhibit a caring attitude! I care about you: I want you todo -better in school. Remember ti-ie vehicle that carries what yotiknow to your study partner is a caring spirit. YOUR STUDYPARTNER NEEDS To KNow You CARE before they will care aboutwhat you know. Your success as a tutor is not dependent uponhow much you know, but rather how much you care.

6 S. JO,

BE POSITIVE NOT NEGATIVE. Place yourself in your study partner'ssituation. Sincere compliments always work better than embarrassingcriticism. Drop "no" from your vocabulary.

ctN BE COURTEOUS AND .THOUGHTFUL. This includes starting andstopping a lesson on time and being attentive to your study partner'sconversation about himself and his personal problems. If you'rewilling to listen, you"l be amazed at how much he can teach you.

USE HUMOR TO MAKE TI-IE SESSION FUN. Never hesitate to admit amistake or that you don't know something. It can be a great learningsituation togetl ler.

BE PATIENT. We all require understanding from others, and learningcan be difficult when other problems in our lives also demandattention.

UNDERSTAND that every learner has a lot of experience, informationand knowledge even though his formal education may not have beenadequate.

You will often be the one who provides the encouragement tocontinue. DISCUSS THE PROGRESS YOU HAVE MADE, and writedown what has been learned. It helps your study partner see hisprogress toward his goal.

BE FLEXIBLE. Never think that because you've started one methodthat changes cannot be made. Think about the way your studypartner learns best. Maybe he needs information now that youplanned for later. Maybe he needs more of a challenge or a differentapproach. Remember that people learn differently. It's helpful whenwriting, listening and reading are all used, but it's up to you to find outwhat does succeed.

MAKE SURE every lesson not only contains challenging work for yourstudy partner but also contains enjoyable material that can besuccessfully handled.

YouR STUDY PARTNER SHOULD UNDERSTAND WHAT I-1E IS TODO. It is easy to say too much, so say enough to be clear, thenprovide time for questions. Let him practice with the material befnreworking on his own. Writing down the assignment helps.

LET HIM PARTICIPATE, NOT JUST LISTEN. Having him correct hisown papers will help him learn what needs to be worked on.

You ARE GUIDING YOUR STUDY PARTNER INTO INDEPENDENTLEARNING. Everything you do should lead to that. Be glad when hetells you that something isn't working. That can mean he is analyzingsome of his own learning needs.

REVIEW FOR RETENTION. Practice is good, but don't do so much ofit that it becomes unthinking behavior just to finish a page. However,allow for enough practice to learn the skill.

ALWAYS BE ALERT to any problems needing special attention, suchas hearing or visual difficulties.

NAME:

1. The things I like to do after school are:

4. The television programs I enjoy most are:

3.. My hobbies are:

4. If .1 could take a trip, I would like to go to:

5. My favorite real-life hero is:

6. My favorite make-believe hero is:

7. The school subjects I like best are:

8. I like to read these types of stories:

SPORTS: Circle the sports you enjoy doing.baseball fishing ice skatingbasketball football joggingbicycling golf roller skatingbowling handball skateboardingboxing hockey soccer

INTERESTS: Check things'you would like to knowart detectives mysteryauto mechanics electricity race carsbasketballcomic bookscowboys

famous peoplefootball playersmusic

I i

riddlesrock starsstories about

swimmingtenniswrestlingvolleyballother

more about.televisionwoodworkother

people

USE THESE QUESTIONS TO GET TO KNOW YOURSTUDY PARTNER BETIER!

Where were you born?

How many are in your family?

%, What do you do in your spare time?

What kind of work do you do?

ctN Why did you take this course?

What would you most like to gain from this course?

What are four accomplishments that you are proud of?

%. What is your favorite TV program?

What were the best and worst things that happenec to you last year?

If you could change just one thing about this world, what would it be?

What has been your most emban-assing moment?

%1 What is your favorite color and why?

What makes you angry?

Who is your favorite person?

ckt1 If you could trade places with someone, who would it be?

j

%. These things make me feel important, for example:making a good grade or getting a compliment.

;.My favorite hobby is:

%. I am gdod at (my best talent or skill is):

My favorite school subject is:

One of the most difficult things I have ever done is:

ckL I feel cared about or appreciated when:

I AM GOOD,

BUT I AM ALSO GETTING BETTER!

Setting GoalsGoal setting should be an ongoing process guided by the tutor. Asone goal is achieved it should be replaced by another goal. Thestudy partner and the tutor should make their goals achievable.- Areminder: The goals should be set by the study partner, who mayhave somewhat different goals from those the tutor might set.These points should be considered when setting realistic goals:

Gáals must be realistic This is very important because thepurpose of goal setting is for Sam to reach one. Setting a goaland reaching it is success. There are some things your S.P.can do that are not related (but they really are) to A B or C.Sam can.:

a. Come to class every day next weekb. Come to class on timec. Come to class with his stuff paper, pencil,

book and assignmentd. Do his homework on time

Goals must be of short duration Shorter the better. If t1-12 goalis realistic Sam should reach it. (How can we know whatSam can do remember previous tutor tips.) Successproduces success. Praise your S.P. and then set another goal.

Setting and reaching of goals can be a very effective tool in thebreaking of the cycle of failure. Nothing succeeds like success!

When things go wrong, as they sometimes will,When the road you're trudging seems all uphill,When the funds are low and the debts are high,And you want to smile, but you have to sigh,When care is pressing you down a bitRest if you must, but don't you quit.

Life is unstable with its twists and turns,As every one of us sometimes learns,And many a person turns aboutWhen they might have won had they stuck it out.Don't give up thdugh the pace seems slowYou may succeed with another blow

Often the struggler has given upWhen he might have captured the victor's cup;And he learned too late when the night came down,How close he was to the golden crown.Success is failure turned inside outThe silver tint of the clouds of doubtSo stick to the fight when you're hardest hitIt's when things seem worst that you mustn't quit.

III. Sample Activities and Lesson Plans

- Peer Tutor Training Ideas

- Sample Activity

::

PEER TUTOR TRAINING IDEAS

1. Peer tutor comes to SE classroom for the designated period for the first few

days (1-5 days).

A. Teacher talks about specific disability (characteristics of learning andbehavior, specific to the designated student).

B. Tutors move about room and choose a first and second choice for apartner to work with, or a Tutee may be chosen for them.

C. Tutor and Tutee meet each other (with teacher prompts if necessary).

D. Tutor and Tutee engage in a desired activity together in order to getacquainted. This is a good chance to observe behaviors.

2. Teachers train tutors (1-3 days).

A. Tutors role (commitment, what is expected of them, etc.).

B. Tasks and materials (Identify skills the tutees need to work on and waysthe teacher addresses these skills).

C. Appropriate means of giving directions, reinforcing, addressinginappropriate behaviors and giving feedback.

D. Teacher individualizes instruction for each tutee. Skills and subjectareas that need to be worked on. The tutor then picks the areas thatthey are interested in presenting to the tutee. Once the activities arediscussed, the teacher helps the tutor evaluate what tutee's skillful interms of the chosen activity (i.e., telling time, coin recognition, usingsentences, initia ng conversation, etc.).

E. Teacher then demonstrates the activity, the tutor practices, is observed

and given feedback.

F. Teacher and Tutor discuss opportunity for social activities and socialskills training.

- SAMPLE ACTIVITY

Coin recognition

Objective: The tutee will recognize a penny, nickel, dime and a quarter.

Activity

1. A group of coins is placed on thedesk and the tutee is asked to givethe tutor a specific coin.

2. The tutee looks at pictures of coinsand identifies them.

3. The tutee uses work sheets topractice matching different coins.

4.. Using a money folder, the tutee isable to put the same coin in the boxthat was placed in the pocket belowthe box.

5. Two coins are placed in front ofthe tutee, one coin up and one coindown. She is asked to match thefronts and the backs of the coins.

6. The tutor creates a game to helpthe tutee learn to recognize coins.

DateAccomplished

IV. Evaluation Forms

- Tutor Schedule Forms

- Record of Tutor Experiences

Tutor Evaluation Forms

- Peer Tutor Observation Schedules

PEER TUTOR INFORMATION I.ORM

Please complete the following questions:

Name: Phone number:

Grade: School:

Free Period: Lunch Period:

Are you available during lunch or after school?

Guidance Counseler:

Please list a teacher who can be contacted as a reference

Teacher's name: -

Class they teach:

The students in the Life Skills classes have varying abilities and special needs. Pleaseindicate which individual you are most interested in working with by numbering 1-4, 1 beingthe most interested and 4 being the least interested.

Students who have higher skills

Students with autism

Students with physical disabilities

Students with difficulties communicating

DO NOT WRITE BELOW THIS LINE

Teacher: Tutor:

Scheduled First Meeting:

Taking course for semester or year:

Comments:

t)PEER TUTOIVINFORMIT. RM

Do you have any experience with people with disabilities? Yes/NoIf yes, please describe.

What are some of'the reasons why you are interested in workingwith people with disabilities?

Please list any questions, concerns or comments you may haveregarding the Peer Tutoring Class.

Peer Tutor Class Schedule

Clubs: Meeting time:

Fall

Name:

Monday Tuesday Wednesday Thursday Friday

1

2

3.

4

5

6

AS

L

PLEASE INCLUDE THE COURSE, TEACHER AND ROOM NUMBER (IF POSSIBLE)

SPRING

PLEASE INCLUDE THE COURSE, TEACHER AND ROOM NUMBER

Record of Tutor Experiences

As part of the course requirements, you are expected tocomplete a daily journal regarding your tutoring experience.

Completing Your Log:

In your daily log you may want to include your feelings,what you did with your tutee, behavioral observations -of yourtutee, what you enjoyed, what you did not enjoy or any otherimportant or relevant informatior,

Sample:

Date: 1/10/94Activity: Went to the libraryReflections: Today, Sarah and I went to the library to checkout books. It took us a while to get there because Sarah keptstopping and talking to people in the hallway. Sarah seemed toenjoy being in the library looking at the magazines. She smiledand laughed while we looked through them. I am starting to feelmore comfortable with Sarah and had a fun day today.

RECORD OF TUTOR EXPERIENCES

Tutor Study Partner

A daily record of your hours, activities, and reflections of experiences.

Date:

Activity:

Reflections:

Date:

Activity:

Reflections:

Date:

Activity:

Reflections:

Date:

Activity:

Reflections:

Date:

Activity:

Reflections:

3 0

),.

TUTOR EVALUATION FORM

Teacher

Tutor

A.

Name: Date:

Name: Tutee:

Peer Tutor is: Always Often Sometimes Seldom Never

1. Dependable 5 4 3 2 1

2. Shows positive attitude 5 4 3 2 1

3. Uses reinforcementeffectively

5 4 3 2 I

...

4. Helpful 5 4 3 2 1

B. Peer Tutor:

1. Starts on time 5 4 3 2 1

2. Uses time wisely 5 4 3 2 1

3. Completes assignments 5 4 3 2 1

4. Has good rapportwith tutee

5 4 3 2 1

5. Seeks help if needed 5 4 1 2 1

C. Su-:cessful activities and procedures:

D. Suggested activities and objectives:

E. Additional Comments:

Teacher Date

Tutor Date

3 t

Tutor

Tutor Observation Schedule

Interview Observations Evaluation

Date Date/comments Date/Comments

V. Introduction to Special Education Services

Current Trends in Special Education

Special Education Legislation & Definitions

Least Restrictive Envii.onment

Multidisciplinary Team

Individualized Education Program

Disciplinary Procedures

Misconceptions about Exceptional Children

Misconceptions about Persons with Disabilities

County Graduates Defy Odds to Realize Goals

Issues in Special Education: An Act ofTransformation

Peer Group Education

;'

Current Trends and Issues

Bob Dylan could have written his song "The Times They Are A-Changint" for the field of spec_al education. Special educationhas a rich history of controversy and change. In fact,controversy and change are what make the teaching and study ofpeople with disabilities so challenging and exciting. The 1980'sand 1990's have seen especially dramatic changes in the educationof people with disabilities, and current thinking indicates thatthe field is poised for still more changes.

Integration

Integration, sometimes referred to as mainstreaming,involves the movement of people with disabilities frominstitutions to community living, from special schools to regularpublic schools, from special classes to regular classes. As abroadly supported social issue, integration began in the 1960'sand is going stronger than ever today. In the 1960's and 1970's,champions of integration were proud of the fact that they wereable to reduce the number of people with disabilities residing ininstitutions and the number of special education studentsattending special schools and special self-contained classes.Some of today's more radical proponents of integration, however,will not be satisfied until virtually all institutions, specialschools, and special classes are eliminated. They propose thatall students with disabilities be educated in regular classes.And even today's more conservative advocates of integration arerecommending a much greater degree of interaction betweenstudents with and without disabilities that was ever dreamed ofby most special educators in the 1960's and 1970's.

Normalization

A philosophical belief in special education that everyindividual, even the most disabled, should have an educationaland living environment as close to normal as possible.

SPELIAL 1DUCATION LEGISLATION AND DEFINITIONS

Two landmark federal laws were passed in 1990: the Individuals with DisabilitiesEducation Act (IDEA) and Americans with Disabilities Act (ADA). IDEA amended a 1975 lawand it ensures that all children and youth with disabilities have the right to a free appropriatepublic education. ADA ensures individuals to non discriminatory treatment in other aspects oflife and provides civil rights protection in areas of employment, transportation, publicaccommodations, and telecommunications.

}DEA legislation mandates that special education services be provided. Special educationservices are provided at no cost to parents, are designed to meet the unique needs of the child,and are supervised and directed by public school personnel in a setting that meets statestandards. This is called a FREE APPROPRIATE PUBLIC EDUCATION (FAPE).

WHAT?

SPECIAL EDUCATIONSERVICES

Special Education services are-necially designed instruction

'ermined by the unique needs ofote student and should be as nearlylike the regular school program aspossible. Special Education cantake place in a variety of settingsfrom the regular classroom tohospital or home instruction.

RELATED SERVICES

Related Services are providedto assist the student to benefitfrom special education.Related Services include, butare not limited to, thefollowing:

TransportationHearing ServicesVision ServicesCounseling ServicesPhysical TherapyOccupational TherapySpeech/LanguageTherapy

INDIVIDUALIZED EDUCATIONPROGRAM

All services must be providedaccording to an individualizededucation program or IEP. An MPis a written program developed bythe parents and the school systempersonnel and includes:

The type of servicesLong-term goals for thestudentShort-term objectives orintermediate steps; not dailylesson plansOther services, if needed

3 a

PLACEMENT MUST OdCUR IN THE LEAST RESTRICTIVE ENVIRONMENT

The special educat.i6n and related services to be provided and the amount of participationin the regular education program is called PLACEMENT. Placement must be provided in theLEAST RESTRICTIVE ENVIRONMENT. The Least Restrictive Environment is determinedby the amount of time an eligible child spends with children who do not have disabilities.

WHERE?

le:EAST RESTRICTIVE ENVIRONMENT.

Student should attend the school The place where student goes to Student's school program shouldhe/she would attend if not school should not separate him/her be in a setting where he/she candisabled. If this is not from the regular school program be with non-disabled children asappropriate, tile place where or from peers of similar much as possible.student goes to school should be chronological age any more thanas much like the regular schooland as close to student's home aspossible.

necessary

Decisions about the student's Individualized Education Program (thP) in the leastrestrictive environment must be developed at a meeting.of the MIIL'FIDISCIPLINARY TEAM(M-TEAM).

WHO?

MULTIDISCIPLINARY TEAM

An M-Team is a group of people that mush include at least:

the parent or legal guardian

the student, when appropriate

A teacher who knows about the instructional needs of the child

The principal or someone that he/she assigns

A specialist who understands and can explain the results of the student'sassessment (this person is only required at the initial or first meeting)

The parent, or the school system may invite other persons to attend the M-Teammeeting.

FOUR VERY IMPORTANT THINGS HAPPEN AT M-TEAM MEETINGS:

The members of the M-Team will do the following:

1. Determine if student is eligible for special education services at the timeof the initial and re-evaluation (at least every three years),

2. Develop the individualized education program for the student,

3. Decide which special education services the student will receive, and

4. Decide if other services are essential to the educational program of thestudent.

3

THE INDIVEDUALIZED EDUCATION PROGRAM (i_EP)

Contents of the IEP

When the M-Team meets to develop the LEP they will discuss the following componentswhich will be included in the LEP:

(1) Student's present levels of performance;

(2) Annual goals expected to be achieved at the end of one year for area(s) of need;

(3) Short term objectives which measure progress toward meeting the goal(s);

(4) Specific educational and related services needed;

(5) A description of the amount of time, number of sessions, anticipated duration of theservice, the date the service will begin and end, and who will be responsible forproviding the service;

(6) The type of vocational services needed and, if they aren't needed, why such servicesaren't needed;

(7)

(8)

(9)

A statement of the needed transition services for student beginning at age 16 (14 oryounger, if needed) which will promote the understanding of and capability to make thetransition from "student" to "adult";

How much time the student will participate in regular education and in special educationservices provided in the regular classroom;

State mandated tests which the child will take during the IEP period and, if appropriate,modifications to be made and

(10) Methods of monitoring the student's progress at least annually, and naming the personresponsible for this monitoring.

After the M-Team has completed the IPP, the parent may request a copy of the TEP totake home.

NOTE: Some children with disabilities may need special equipment such as wheelchairs,braces, crutches or assistive technology devices/equipment. The school system must makearrangement, if required, in order for a child with a disability to attend and participate in school.Any necessary special arrangements should be included in the child's IEP.

DISCIPLINARY PROCEDURES

WHAT IS TEE SCHOOL SYSTEM REQUIRED TO DO WHEN DISCIPLINING CHILDRENWITH DISABILITIES?

Appropriate behavior is expected of all children. A child who has a disability andexhibits inappropriate behavior may need to be disciplined. If misbehavior is a problem, thechild's IEP should include goals directed toward improving the child's behavior.

If it is necessary to discipline an eligible child by excluding the child from school for atotal of more than ten school days per school year, procedural safeguards must be followed.Since exclusion of an eligible child for more than a total of ten school days per school year isconsidered to be a change in educational placement, the M-Team must meet to make decisionsregarding the student's behavior.

THE M-TEAM MUST DECIDE the following:

I. Was the behavior a result of the child's disability?

2. Are the current IEP and placement appropriate?

If the M-Team determines that the behavior was a result of the child's disability, the childcannot be excluded from an educational setting and must be placed in a setting that moreappropriately meets the child's needs.

If the M-Team determines that the behavior was not a result of the child's disability, thestudent may be excluded from school, but educational services as determined by the M-Team,must be provided during that period. Services delivered to the eligible child must be based onthe goals/objectives of the child's IEP and provided by a teacher who is endorsed in SpecialEclucation.

If the school system determines that a student should be removed from school for morethan ten days per school year for dangerous or disruptive conduct, the system has the followingoptions:

1. School system obtains a parent's consent, to exclude the child fromschool, or

2. If a parent does nor consent, school officials must secure a federal courtinjunction to exclude your child.

If your mentee exhibits problem behavior that results in a school disciplinary process,it is important that you, as a mentor and advocate, are aware of the disciplinary procedures anddue process.

Please see enclosed handouts for explicit definitions of code of student conduct and procedures.

MISCONCEPTIONS ABOUT EXCEPTIONAL CHILDREN

MYTH > Public schools may choose not to provide educa--,--stion for some students.

By law, the student with a disability must beplaced in the least restrictive environment (LRE). The LRE isalways the regular classroom.

FACT Federal legislation specifies that to receive federalfunds, every school system must provide a free, appropriateeducation for every student regardless of any disablingcondition.

FACT >. The law does require the student with a disabilityto be placed in the LRE. However, the LRE is not always theregular classroom. What the LRE does mean is that the studentshall be segregated as little as possible from home, family,community, and the regular class setting while appropriateeducation is provided. In many, but not all, instances this willmean placement in the regular classroom.

MYTH )-- The causes of most disabilities are known, but FACT .. In most cases, the causes of disabilities cre notlittle is known about how to help individuals overcome or known, although progress is being made in pinpointing whycompensate for their disabilities,many disabilities occur. More is known about the treatment ofmost disabilities than about their causes.

MYTH - People with disabilities are just like ev,.tryone else.

MYTH - A disability is a handicap.

FACT First, no two people ore exactly alike. People withdisabilities, just like everyone else, are unique individuals.Most of their abilities are much like those of the "average"person who is not considered to hove a disability.Nevertheless, a disability is a characteristic not shared bymost people. It is important that disabilities be recognized forwhat they are, but individuals with disabilities must be seen ashaving many abilitiesother characteristics that they shorewith the majority of people.

FACT - A disability is an inability to do something, thelack of a specific capacity. A handicap, on the other hand, isa disadvantage that is imposed on an individual. A disabilitymay or may not be a handicap, depending on the circum-stances. For example, inability to walk is not a handicap inlearning to read, but it can be a handicap in getting into thestands at a ball game. Sometimes handicaps are needlesslyimposed on people with disabilities. For example, a studentwho cannot write with a pen but can use a typewriter or wordprocessor would be needlessly handicapped without suchequipment.

MISCONCEPTIONS ABOUT PERSONS WITH DISABILITIES

MYTH >. Normalization, the philosophical principle thatdictates that the means and ends of education for studentswith disabilities should be as culturally normative as possible,.

is a straightforward concept with little room for interpretation.

MYTH >- All professionals agree that technology should beused to its fullest to aid people with disabilities.

MYTH - Research has established beyond a doubt thatspecial classes are ineffective and that mainstreaming is effec-tive.

MYTH >- Professionals agree that labeling people withdisabilities (e.g., retarded, blind, behavior disordered) is moreharmful than helpful.

MYTH >- People with disabilities are pleased with the waythe media portrays people with disabilities, especially whenthey depict extraordinary achievements of such persons.

MYTH >- Everyone agrees that teachers in early interven-tion programs need to assess parents os well as their children.

MYTH >- Everyone agrees that good early childhood pro-gramming for students with disabilities should follow the sameguidelines as that for nondisabled preschoolers. i

MYTH >- Professionals agree that all students with disabili-ties in secondary school should be given a curriculum focusedon vocational preparation.

FACT >- There are many disagreements pertaining to theinterpretation of the normalization principle. As just oneexample, some have interpreted it to mean that all people withdisabilities must be educated in regular classes, whereasothers maintain that a continuum of services (residentialschools, special schools, special classes, resource rooms,regular classes) should remain as options.

FACT >- There are some who believe that technologyshould be used cautiously because it can lead people withdisabilities to become too dependent on it. Some believe thatpeople with disabilities can be tempted to rely on technologyrather than develop their own abilities.

FACT >- Research comparing special versus mainstreamplocement ho been inconclusive because most of these studieshave been methodologically flawed. Researchers ore nowfocusing on finding ways of making mainstreaming workmore effectively.

FACT Some professionals maintain that lobels help pro-fessionals communicate, explain the aiypical behavior of somepeople with disabilities to the public, and spotlight the specialneeds of people with disabilities for the general public.

FACT >- Some disability rights advocates are disturbed withwhat they believe are too frequent overly negative and overlypositive portrayals in the media.

FACT >- Some authorities are now of the opinion that,although families are an important port of intervention pro-gramming and should be involved in some way, special edu-cators should center tneir assessment efforts primarily on thechild and not the parents.

FACT >- There is considerable disagreement about whetherearly intervention programming for children with disabilitiesshould be child-directed, as is typical of regular preschoolprograms, or should be more teacher-directed.

FACT >- Professionals are in conflict over how much voca-tion-' ..arsus academic instruction students with mild disabili-ties should receive.

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4

PROGRESS PHOTO 1ST MATT GENTRYTony Hensley says he'd like to study business administra-tion in college.

With a 3.8 grade-point average,Hensley is in the top10 percent of his class.

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Young photographer focuses onattending a more accessible IJlia

The University of Virginia should be more accessible toTony Hensley in a couple of years

The problem is not academic Right now, ports of UVa'scampus are not physically accessible for the WesternAlbemarle High School senior

Hensley was born with a muscular condition that left himweak, and he started using a wheelchair after he wasinjured in an automobile wreck

"I plan to attend Peidmont Virginia Community Collegefor two years and transfer to UVa," he said "With theAmericans with Disabilities Act, it should be more accessiblein a couple of years "

In 1986, nine months after having two metal rods placedin his back to help correct curvature of the spine, Hensleywas inlured in a car accident

He was trapped in the vehicle for 45 minutes, and his legwas broken in three places.

Being the only senior at WAHS in a wheelchair has nothindered his progress in any way, Hensley said.

The school is accessible for people with disabilities, hesaid. And his disability is no big deal to his classmates. Hesaid he gets treated the same as everyone else.

He and his 215 classmates graduate tonight at 8 p.m. inWarrior Stadium at 'he High School.

With a 3.8 grade-point average, Hensley is in the top 19percent of his class. He is a member of the National HonorSociety and the French Honor Society and has won variousacademic awards. Hensley loves photography and staysbusy photographing weddings and other events. He alsowas hired to photograph several senior portraits this year.

He became interested in photography while on the year-book staff at Heritage Christian School.

Hensley drives a van and often goes on the Blue RidgeParkway to take photographs that he mats and sells.

He is not sure whether photography would be profitableenough to make a living. "I'm interested in business admin-istration," he said. "Eventually I'd like to be a businessowner of some sort."

Hensley lives in North Garden with his parents, John M.and Betty Jo Hensley.

,of.:Tronsfo. *motion:, :;F Lawfor ) bled loChange Wor place-')=Ativ=

...... , -... I ..

7he' most far-reachingcivil rights law since the1960s takes effect Sunday,promising to force the kindof wholesale changes thatwould make the American

workplace far more hospitable to workers with physicaland mental disabilities.

The new law, the second phase of the Americans WithDisabilities Act, outlines changes that companies mustmake to nearly every facet of employment, from job appli-cations and interviews, to health insurance plans, compen-sation and work schedulesall designed to extend to thedisabled the same rights that women and minorities wonnearly three decades ago.

At many companies in the Washington area and acrossthe country, managers already are bending and flexing tomeet the needs of disabled workers.

Marriott Corp. uses interpreters to h.elp a hearing-impaired employee at its Bethesda headquarters under-stand what is being said at staff meetings. A blind managerat Nordstrom's Pentagon City store has a scanner attachedto his computer that reproduces ordinary documents inBraille.

In Atlantic City, owners of the Trump Castle casinoaltered a blackjack table to help a dealer who uses awheelchair. And Continental Insurance, a New York-basedproperty and casualty company, has an enlarging deviceattached to a computer so that a clerical worker with poorvision can see her keyboard more clearly.

Since it affects all industries, and ultimately touchesmillions of businesses, the act has a scope matched by fewother laws. Generally, it is being praised by businesses asan effort to reach out to a disenfranchised segment of soci-cty. But it also has drawn criticism from industry groupsthat fear it could open the floodgates to litigation and sub-ject businesses to large financial judgments by juries ....

The law does not state precisely what a company mustdo or spend to ensure that it does not discriminate, sincewhat is appropriate for a commercial giant like IBM mightnot be for a small retailer. What the law does require isthat employers make "reasonable accommodations" toassure that qualified applicants with physical or mentaldisabilities are not discriminated against, unles . theemployer can show that the accommodation would put an"undue hardship" on its operations.

For a large law firm, that couLl mean providing a read-er for a lawyer who is blind; for a computer company, itcould mean widening doorways or adjusting a desk'sheight to accommodate a systems analyst in a wheelchair.

The law goes well beyond traditional notions of disabil-ity by including any person with an impairment that sub-stantially limits a major life activity. It protects people wit'nAIDS, with cosmetic disfigurements, with dyslexia, eventhose who suffer from stress or depression if their condi-tion is so severe as to be considered disabling by a psychia-trist .... To prepare themselves for the July 26 deadline,companies in recent weeks have been doing everythingfrom scrutinizing the wording of job applications toreviewing hiring and promotion practices to ensure noth-ing they do could be considered discriminatory.

Under the new law, for example, applicants cannot beasked whether they have a disability, only whether theyare able to perform specific functions that are consideredessential to a job. For employers, that often means deter-mining just ekactly what are the essential functions of eac:-.job.

"Is it essential for a painter in a wheelchair to be able toreach the ceiling? Probably not, if we have a crew of 32other painters who can do it," said Roger Wagner, presi-dent of Trump Castle, which is reviewing some 600 dis-tinct jobs to determine their essential functions ....

Even with the force of the act on their side, many advo-cates for the disabled say it will be some time before thefortunes of that community improve significantly. Theunemployment rate among those with disabilities is esti-mated to run as I,igh as 60 percent and, as a result, many,lack the skills necessary to compete for jobs.

"It is a Catch-22," said Peter Blanck, a University ofIowa law professor who is involved in a study of personswith disabilities. "If you haven't been in the work force,you won't have the skills needed for a lot of jobs."

The act does not mandate job quotas; it only requiresthat employers hire and promote qualified candidates,whether they have a disability or not.

To Mary Beth Chambers, a deaf employee who worksthe cosmetics counter at Nordstrom's Pentagon City store,the struggle for equality in the work place is well worth it.

"It's not people's fault that they're hearing-impaired,"said Chambers, who reads customers' lips.

"Companies don't know what they're missing," shesaid. "These people are capable of doing anything, and ifthey keep trying, their dreams will come true."

SOURCE: Liz Spayd, The Wnshington Post, Sunday, July 26, 1992,pp. CI, C9. (c) 1992, The Washington Post. Reprinted withpermission.

43BEST COPY AVAILABLE

Peer-Group Education

Although the widening world ofchildhood contains hundreds of lessonsdelivered by parents and teachers, youngpeople deliver powerful lessons to oneanother, too. Small children are uncannyabout teaching each other "the ropes" toacceptable childhood living. For example, Irecall seven-year-old Bob McGee, with men-tal retardation and cerebral palsy, who fell tothe floor kicking and screaming every time ateacher tried to take off his bib. Then whenthe developmental center closed down andBob was transferred to a special class in aregular public school, he had attended foronly two days before the bib came off! It takeslittle imagination to know what probablywent on between him and the other students.

Teen-agers perform rich informal functionsin teaching one another what life is all aboutand how they want their generation to shapethe world. Although this curriculum cannotbe found in books, teen-agers share with eachother their own . . .

valuesclothing stylesmeaningful slang wordssense of justicechoice of foodshope for the futureeven their anger for mistakes their elders

made before them.(Have you forgotten?)

Until recently, many children with handi-caps were denied peer-group interactionswith 'others their own age. Like victims ofapartheid, they attended special schools,rode special buses, and participated in specialrecreation programs. Of course, such distinc-tive activities had value, and there always willbe a need for some specialized programs.Nevertheless, such utter isolation produCedtragic consequences. It placed one morebarrier in their path to the richest life possible.Now this unfair obstacle is being lowered.

Today many preschools integrate childrenwith developmental disabilities into classeswith their "normal" peers. And what oftengoes on in such settings can enlighten us all.A documentary film, Why Be Friends, de-scribed integrated preschools in eastern Ne-braska. "Normal" children spoke openly andin unrehearsed fashion about their friendswith handicaps. One four-year-old was askedabout her relationship with a friend havingmultiple handicaps.

"What's that thing behind Carrie's head?""That's the -thing that holds her head.""Why does she have to have that?""Because then her head won't do anything,

but it helps her lean back a lot.""How would you feel if Carrie couldn't

come here to school?""Well, then I'd go to her house."Experiences like these in integrated pre-

schools teach us that prejudice against per-sons with handicaps is learned behavior. Andif prejudice can be taught by what we elderssay (or fail to say), then tolerance, respect,and love for those with disabilities can betaught, too.

Forward-thinking public schools recognizethe power of peer-group education. Dr. LouBrown from the University of Wisconsin,which has close training relationships withthe Madison Metropolitan School District,gave a touching rationale for such involve-ments at one of the symposiums on theUnited Nations' International Year of theChild (1979). He felt that neighborhoodchildren should relate to students with evensevere and profound handicapping con-ditions.

Children with severe and profound handi-caps need to be in regular schools, too. Thisinteraction between these handicapped stu-dents and other students is utterly remark-able. And why not? After all, the futureparents of such handicapped children are inthe schools today. And v, hat kind of

attitudes, values anci expeaations will suchparents need? Also, future doctors, teachers,lawyers, policemen and ministers are in theschools, too. They need to grow up withsuch children so they will understand themand not reject them. Therefore, we aremaking conscious and systematic attemptsto make sure that every student has somekind of interaction with such handicappedpeople. And in some schools I work doselywith, we train regular students to handleseizures in school . . . to work with handi-capped students at recess, in the gym andthe swimming pool . . to hire out as babysitters for handicapped children . . . to helpsome learn to ride the bus . . . to wheelstudents in wheelchairs to and from school.In many cases, regular students receive classcredit for their involvements with handi-capped persons. These students have be-

come so attracted to one another, we can'tkeep them apart.'

Harold Howe II, the former United StatesCommissioner of Education and present vicepresident of Education and Research at theFord Foundation, believes strongly that peer-group education will become a new way oflife in public schools by A.D. 2024. He stated,"What the schools increasingly reward is notthe student's own achievement but hiscontribution to the achievement of others.And the higher his own attainments inlearning, the more he is expected to do inhelping others to learn."2

It will happen. We can slow it down,however, as long as we keep people withhandicaps apart from the rest of us.

Consider These Options

Become interested in remarkable relationships between persons with handicaps andso-called normal persons in your neighborhood. They form the stuff books and speechesare made of. I make a living from such happeningsmaybe you can observe relationshipsworth writing or talking about, too.

Know that life becomes exciting and the world moves forward when people withindividual differences understand and accept each other. After all, when we associate onlywith those who think like we do, act like we do, dress like we do, talk like we dowell, itcan get downright boring.

Watch your local public schools. Every time you see them develop a program that evensmells like peer-group education involving persons with handicaps, reinforce them. Sendwritten thank yous. Submit letters to editors. Thank the persons responsible personally.Even hug them and kiss them, if you can get away with it.

Know that peer-group education is a coming way of life. It is coming. It is up to us todevelop detailed responses that will help it along.

1. Robert Perske, ed., The Child with RetardationThe Adult of Tomorrow: An International Year of the Child ReportSponsored by the International League of Societies for the Mentally Handicapped and the Association for Retarded Citizens(Arlington, Tex.: ARC-National Headquarters, 1980).

2. Harold Howe, "Report to the President of the United States from the Chairman of the White House Conference onEducation, August 1, 2024," Saturday Review World (August 24, 1974).

4 z)

VI. Mental Retardation

General Information about Mental Retardation(NICHCY Fact Sheet)

Misconceptions about Persons with MentalRetardation

The Importance of Friendship

General Information about Down Syndrome (NICHCYFact Sheet)

Mainstreaming Case History: R.J. was MentallyRetarded

Fact Sheet Number 8 (FS8) I cc3

NICHCYNational Information Center for Children and Youth with Disabiliti.es

P.O. Box 1492, Washington, D.C. 20013-14921-800:695-0285 (Toll Free) (202) 416-0300 (Local, Voice/. t 1)SpecialNet User Name: NICHCY ** SCAN User Name: NICHCY

General Information About

MENTAL RETARDATION

Definition

People with mental retardation are those who de-velop at a below average rate and experience difficultyin learning and social adjustment. The regulations forthe Individuals with Disabilities Education Act (IDEA),formerly_the Education of the Handicapped Act (PublicLaw 94-142), provide the following technical definitionfor mental retardation:

"Mental retardation means significantly subav-erage general intellectual functioning existingconcurrently with deficits in adaptive behaviorand manifested during the developmental pe-riod that adversely affects a child's educationalperformance."

"General intellectual functioning" typically is mea-sured by an intelligence test. Persons with mentalretardation usually score 70 or below on such tests."Adaptive behavior" refers to a person's adjustment toeveryday life: Difficulties may occur in learning, com-munication, social, academic, vocational, and indepen-dent living skills.

Mental retardation is not a disease nor should it beconfused with mental illness. Children with mentalretardation become adults; they do not remain "eternalchildren." They do learn, but slowly and with difficulty.

Probably the greatest number of children with men-tal retardation have chromosome abnormalities. Otherbiological factors include (but are not limited to): as-phyxia (lack of oxygen); blood incompatibilities be-tween the mother and fetus; and maternal infections,such as rubella or herpes. Certain drugs have also beenlinked to problems in fetal development.

Incidence

Some studies suggest that approximately 1% of thegeneral population has mental retardation (when bothintelligence and adaptive behavior measures are used).According to data reported to the U.S. Department ofEducation by the states, in the 1989-90 school year,564,666 students ages 6-21 were classified as havingmental retardation and were provided services by thepublic schools. This figure represents approximately1.7% of the total school enrollment for that year. It doesnot include students reported as having multiple handi-caps or those in non-categorical special education pre-school programs who may also have mental retardation.

Characteristics

Many authorities agree that people with mentalretardation develop in the same way as people withoutmental retardation, but at a slower rate. Others suctgestthat persons with mental retardation have difficulties inparticular areas of basic thinking and learning such asattention, perception, or memory. Depending on theextent of the impairmentmild, moderate, severe, orprofoundindividuals with mental retardation will de-velop differently in academic, social, and vocationalskills.

Educational Implications

Persons with mental retardation have the capacityto learn, to develop, and to grow. The great majority ofthese citizens can become productive and full partici-pants in society.

Appropriate educational services that beain in

infancy and continue throughout the developmentalperiod and beyond will enable children with mentalretardation to develop to their fullest potential.

As with all education, modifying instruction to meetindividual needs is the starting point for successfullearning. Throughout their child's education, parentsshould be an integral part of the planning and teachingteam.

In teaching persons with mental retardation, it isimportant to:

Use concrete materials that are interesting, age-appropriate, and relevant to the students;

Present information and instructions in small,sequential steps and review each step frequently;

Provide prompt and consistent feedback;

Teach these children, whenever possible, in thesame school they would attend if they did nothave mental retardation;

Teach tasks or skills that students will use fre-quently, in such a way that students can apply thetasks or skills in settings outside of school; and

Remember that tasks that many people learnwithout instruction may need to be structured, orbroken down into small steps or segments, witheach step being carefully taught.

Children and adults with mental retardation need thesame basic services that all people need for normaldevelopment. These include education, vocational prepa-ration, health services, recreational opportunities, andmany more. In addition, many persons with mentalretardation need specialized services for special needs.Such services include diagnostic and evaluation centers;special early education opportunities, beginning withinfant stimulation programs and continuing throughpreschool; and educational programs that include age-appropriate activities, functional academics, transitiontraining, and opportunities for independent living andcompetitive employment to the maximum extent pos-sible.

Resources

Srnith, R. (Ed.). (1993). Children with mental retardation:A parents' guide. Rockville, MD: Woodbine House.(Telephone: 800-843-7323 (outside DC area); (301)468-8800 (in DC area).]

Trainer, M. (1991). Differences in common: Straight talkon mental retardation, Down syndrome, and life.Rockville, MD: Woodbine House. (See-telephonenumber above.)

Organizations

The Arc (formerly the Association for Retarded Citizens ofthe United States)500 East Border Street, Suite 300Arlington, TX 76010(817) 261-6003

American Association on Mental Retardation (AAMR)1719 Kalorama Road, N.W.Washington, D.C. 20009(202) 387-1968; (1-800) 424-3688 (Toll-Free)

National Down Syndrome Congress1605 Chantilly Drive Suite 250Atlanta, GA 30324(400) 633-1555; (1-800) 232-6372 (Toll-Free)

National Down Syndrome Society666 Broadway, Suite 810New York, NY 10012(212) 460-9330; (1-800) 221-4602 (To1I-Free)

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UPDATE 11'93

4 6For more information contact N1CHCY.

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MISCONCEPTIONS ABOUT PERSONS WITH MENTAL RETARDATION

MYTH - Mental retardation is defined by how a personscores on an IQ test.

MYTH >- Once diagnosed as mentally retarded, a personremains within this classification for life.

MYTH >. In most cases, we can identify the cause of retar-dation.

MYTH >- Most mentally retarded children look differentfrom nondisabled children.

MYTH >- We can identify most cases of mental retardationin infancy.

MYTH >. Persons with mental retardation tend to be gentlepeople who have on easy time making friends.

MYTH >- The teaching of vocational skills to students withretardation is best reserved for secondary school and beyond.

MYTH >. When workers with mental retardation fail on thejob, it is usually because they do not have adequate job skills.

MYTH Persons with mental retardotion should not beexpected to work in the competitive jot, market.

FACT >- The most commonly used definition specifies that,in order for a person to be considered mentally retarded, heor she must meet two criteria: (1) low intellectual functioningand (2) low adaptive skills.

FACT - A person's level of mental functioning does notnecessarily remain stable, particularly for those who aremildly retarded. With intensive educational programming,some persons can improve to the point that they ore no longerretarded.

FACT >- In most cases, especially of those who are mildlyretarded or who require less intensive support, we cannotspecify the cause. For many children who are mildly retarded,poor environment may be a causal foctor, but it is extremelydifficult to document.

FACT >- The majority of children with mental retardationore mildly retarded, or require less intensive support, and mostof these look like nondisabled children.

FACT >- Because most children with retardation ore mildlyretarded, because infant intelligence tests are not very reliableand valid, and because intellectual demands on the childincrease greatly upon entrance to school, most children withretardation are not identified as retarded until they go to school.

FACT >- Because of a variety of behavioral characteristicsand because they sometimes live and work in relatively isolatedsituations, some persons with mental retardation have difficulty

making and holding friends.

FACT >- Many authorities now believe it appropriate tointroduce vocational content in elementary school to studentswith mental retardation.

FACT - When they fail on the job, it is more often because

of poor job responsibility (poor attendance and lack of initia-

tive) and social incompetence (interacting inappropriatelywith

coworkers) than because of incompetence in task production.

FACT - More and more persons who are mentally retarded

hold jobs in competitive employment. Many are helpedthrough supportive employment situations in which a jobcoach helps them and their employer adapt to the work place.

`J

EJMPORTANCEVFATRIENDSHIPIs;,)==.. . s.

Professionals often overlook the fundamental importance offriendship. The following extract highlights the critical rolefriendship can play in the lives of people who are mentallyretarded.

A sense of belonging, of feeling accepted and of havingpersonal worth are qualities that friendship brings to aperson. Friendship creates an alliance and a sense ofsecurity. It is a vital human connection.

People who ore mentally retarded want and needfriendship like everyone else. Yet they typically have fewopportunities to form relationships or to develop theskills necessary to interact socially with others. Theirexposure to peers may he limited because they live andwork in sheltered or isolated environments. They usuallylack a history of socializing events like school clubs, par-ties, or sleepovers that help to develop or refine personolskills. They may not know how to give of themselves toother people and may be stuck in an egocentric per-spective. Persons who are retorded may olso respondinappropriately in social situations. Many people shunadults with retardation who freely hug or kiss strangerswhen greeting them .. . .

Because of their few contacts and opportunities, per-sons with retardation may attempt to befriend strangersor unwitting individuals. Many attempt to become socialacquaintances with their professional contacts. In theireffort to maintain the contacts and relationships they

have developed, some individuals will overcompensate:calling their friend too many times, talking too long onthe phone, demanding attention, and not being able tolet up ... .

Friends can play a vital role in the adjustment tocommunity living of adults who are retarded by provid-ing the emotional support and guidance through the exi-gencies of daily life. Certain organizations have begunto address the need for friendship by initiating socialopportunities . . . [There are] social club(s) for adultswith retardation in which members plan their own par-ties and projects. Some programs offer supervised dat-ing; others establish one-to-one relationships betweenvolunteers and clients for the purpose of aiding adjust-ment. (Patton, Payne, & Beirne-Smith, 1990)

With the increase in mainstreaming, many hope the prob-lems that numerous persons with mental retardation hove inobtaining ond holding friendships will decreose. In the future,it will be interesting to see to what degree professionals willotganize social clubs exclusively for persons with mental retar-dation versus having them socialize with nondisabled persons.

SOURCE: Reprinted with the permission of Merrill, an imprint of

Macmillan Publishing Compony from Mental Retardation, Third editior.by James R.. Patton, Mary Beirne-Smith and James S. Payne.

Copyright C) 1990 by Merrill Publishing Company. (pp. 408-409)

NICHCYF=ct Sheet Nurr.o.er (FS4)

NationarInfarmation Center for Children and Youth with DisabilitiesP.O. Box 1492, Washington, D.C. 20013-1492

1-80695-0285 (Toll Free) (202) 416-0300 (Local, Voice/1 I)SpecialNet U.sr Name: NICHCY ** SCAN User Name: NICHCY

General Information About

DOWN SYNDROME

Definition

1, Down syndrome is the most common and readilyidentifiable chromosomal condition associated withmental retardation. It is caused by a chromosomalabnormality: for some unexplained reason, an acci-dent in cell development results in 47 instead of theusual 46 chromosomes. This extra chromosomechanges the orderly development of the body andbrain. In most cases, the diagnosis of Down syndromeis made according to results from a chromosome testadministered shortly after birth.

Incidence

Approximately 4,000 children with Down syn-drome are born in the U.S. each year, or about 1 inevery 800 to 1,000 live births. Although parents of anyage may have a child with Down syndrome, theincidence is higher for women over 35. Most commonforms of the syndrome do not usually occur more thanonce in a family.

Characteristics

There are over 50 clinical signs of Down syn-drome, but it is rare to find all or even most of them inone person. Some common characteristics include:

Poor muscle tone;Slanting eyes with folds of skin at the innercorners (called epicanthal folds);Hyperflexibility (excessive ability to extendthe joints);Short, broad hands with a single crease acrossthe palm on one or both hands;Broad feet with short toes;Flat bridge of the nose;Short, low-set ears;Short neck;Small head;

Small oral cavity; and/orShort, high-pitched cries in infancy.

Individuals with Down syndrome are usuallysmaller than their nondisabled peers, and their physi-cal as well as intellectual development is slower.

Besides having a distinct physical appearance,children with Down syndrome frequently have spe-cific health-related problems. A lowered resistance toinfection makes these children more prone to respira-tory problems. Visual problems such as crossed eyesand far- or nearsightedness art higher in individualswith Down syndrome, as are mild to moderate hearing_loss and speech difficulty.

Approximately one third of babies born with Downsyndrome have heart defects, most of which are nowsuccessfully correctable. Some individuals are bornwith gastrointestinal tract problems that can be surgi-cally corrected.

Some peOple with Down syndrome also may havea condition known as Atlantoaxial Instability, a mis-alignment of the top two vertebrae of the neck. Thiscondition makes these individuals more prone to in-jury if they participate in activities which overextendor flex the neck. Parents are urged to have their childexamined by a physician to determine whether or nottheir child should be restricted from sports and activi-ties which place stress on the neck. Although thismisalignment is a potentially serious condition, properdiagnosis can help prevent serious injury.

Children with Down syndrome may have a ten-dency to become obese as they grow older. Besideshaving negative social implications, this weight gain

threatens these individuals' health and longevity. A

supervised diet and exercise program may help reduce

this problem.

Educational and EmploymentImplications

Shortly after a diagnosis of Down syndrome isJnfirmed, parents should be encouraged to enroll

their child in an infant development/early interventionprogram. These programs offer parents special in-struction in teaching their child language, cognitive,self-help, and social skills, and specific exercises for

_gross and fine motor development. Research has-'.,shown that stimulation during early developmental7.stages improves the child's chances of developing to

his *6r her fullest potential. Continuing education,positive public attitudes, and a stimulating home envi-ronment have also been found to promote the child'soverall development.

Just as in the normal population, there is a widevariation in mental abilities, behavior, and develop-mental progress in individuals with Down syndrome.Their level of retardation may range from mild tosevere, with the majority functioning in the mild tomoderate range. Due to these individual differences,it is impossible to predict future achievements of-..hildren with Down syndrome.

Because of the range of ability in children withDown syndrome, it is important for families and allmembers of the school's education team to place fewlimitations on potential capabilities. It may be effec-tive to emphasize concrete concepts rather than ab-stract ideas. Teaching tasks in a step-by-step mannerwith frequent reinforcement and consistent feedbackhas proven successful. Improved public acceptance ofpersons with disabilities, along with increased oppor-tunities adults with disabilities to live and workindepenck.Litly in the community, have expanded goalsfor individuals with Down syndrome. IndependentLiving Centers, group-shared and supervised apart-ments, and support services in the community haveproven to be important resources for perscins withdisabilities.

Resources

Pueschel, S.M. (Ed.). (1990). A parent's guide to Downsyndrome: Toward a brighter future. Baltimore,-MD:Paul H. Brookes. (Telephone: 1-800-638-3775.)

Brill, M.T. (1993). Keys to parenting a child with Downsyndrome.. Hauppauge, NY: Barron's.

National Down Syndrome Congress. (1988). Down syn-

Stray-Gundersen, K. (1986). Babies with Down syn-drome: A new parent's guide. Rockville, MD: Wood-bine House. [Call Woodbine House at 1-800-843-7323 (outside DC area) or (301) 468-8800 (in DCarea).]

National Down Syndrome Society. This baby needs youeven more. (See address below.)

Organizatiorts

National Down Syndrome r 1gress1605 Chantilly Drive, Suite 250Atlanta, GA 30324(404) 633-1555(800) 232-6372 (Toll Free)

National Down Syndrome Society666 BroadwaySuite 810New York, NY 10012(212) 460-9330(1-800) 221-4602 (Toll Free)

The Arc (formerly the Association for Retarded Citizens ofthe United States)500 East Border Street, Suite 300Arlington, TX 76010(817) 261-6003; 1-800-433-5255

*- :;.:112.1s fact sheet' 1:s ade. Possibli. through ,Cooperatlye AgreementC#4930A30+?03 bCt-W-e7iii.the AC:ad fot: Edncitional Dev:eloPtient and

the 2fficz -of Sper...htlEdtje.atio9 pro graMi.; US. DepartMent of Ednca--... tioa. MieCcinteuti:of this f,yblicattoii.dci:no t necessarily reflectthe riews'or Polk:its of .the.D4iiittnCiit-of F.-xinCation, nor does menii,O23.oc trade .names, comthercial'pradlicts or'aiganiiations imply endOrsement hythe S.

.

This information Isin thCpublie domain unless otherwLse.lndlCated-Reilders are encouriged.to cop}, Wad share it, but plens.e credit theNational Information Center for Children ind Youth with Disabilities

.

drome (revised pamphlet). (See address below.)For mot c information contact NICIICY.

UPDATE 12193

5 BEST COPY AVAILABLE

OUR FIRST STEP WAS TO REAS-sure R. rs parents. My principaland I met with them and toldthem that the test results wouldguide us in making good, in-formed decisions about R. 3.'seducation. We assured them thatwe'd work with R. J. so he couldgo on to 4th grade with his-iends. And they volunteered to

a tutor for R. J. and to help,an with his homework eachnight.

Then, feeling that "less is more"was an appropriate guideline fora student like R. J., I concen-trated on developing his basicmath and language skills. Be-cause language processing wasdifficult for R. J., I supplementedall oral directions with gesturesor written cues. Not only didthis benefit R. J., but my otherstudents seemed to attend to di-rections more effectively as well.I'd also cue R. J.'s oral responseswith open-ended sentences thathelped him retrieve words, usingsentence patterns such as "Yousaw the..." or "You liked the..."Visual reminders, such as an in-dex card on his desk remindinghim to put his name on each pa-per, helped him increase his in-dependence as well as his ability

handle simple memory re-fements.

Because R. J. was unsure ofhis own abilities, he tended toattach himself to one peer and

As a 2nd grader, R. J. madenumerous speech errors duringoral reading and conversation.His teachers tried a variety of

approaches to help him learn toread, but with little success.R. J. also needed step-by-step

guidance to do simple seatwork.These problems, coupled withR. J.'s difficulties in auditory

memory, prompted his 3rd-gradeteacher, Chris Kramer, to

suggest IQ testing. After someresistance, R. J.'s parents agreedto the testing, which confirmed

that R. J. was educably mentallyimpaired.

Arf

BY MARY DEAN BARRINGER

Atati.

imitate his work. But by elicitingR. J.'s own preferences, inten-tions, and interests, I helped himsee himself as a valued classmember with his own point ofview. For example, I'd ask suchquestions as -R. J., do you havea favorite )" or "Whatdo you think, R. J.?" I also as-signed R. J. to a cooperativelearning group that could workunder my guidance to help him.

With the additional support ofa speech therapist, who workedwith him regularly on his lan-guage problems, and the tutoringprovided by his parents, R. J.improved dramatica'ly. By theend of the year, although notreading at grade level, he'd madeenough progress to keep up withclassmates and he was betterable to do independent seatwork.

R. J.'s future success woulddepend on ongoing assessmentand communication among theschool's professionals and hisparents. At the end of the year,with all the support techniquesset up to continue, I confidentlypromoted him to 4th grade.

ResourcesThe Council for Exceplional Children,1920 Association Dr., Reston, VA22091, has information on educatingchildren with exceptional needs.

Ma, y Dean Borringer, o former speoal educotionteacher, is currently the direcior of progroms forthe advancement of teaching for the NotionalBoard for Frofessionol Teaching Stondords.

VII. Learning Disabilities

General Information about Learning Disabilities(NICHCY Fact Sheet)

Misconceptions about Person with LearningDisabilities

"I Couldn't Read Until I was 18"

NT

Fact Sheet Number 7 IFS?),

National Inforihation Center for Children and Youth with DisabilitiRsP.O. Box 1492, Washington, D.C. 20013-1492

1-800-695-0235 (Toll Free) (202) 416-0300 (Local, Voice/11)SpecialNet User Name: NICHCY ** SCAN User Name: NICIICY

General Information About

LEARNING DISABILITIES

Definition

VFhe regulations for Public Law (P.L.) 101-476, theIndividuals with Disabilities Education Act (IDEA), for-rnerly P.L. 94-142, the Education of the Handicapped Act(EHA), define a learning disability as a "disorder in one ormore of the basic psychological processes involved in

understanding or in using spoken or written language,iwhich may manifest tself in an imperfect ability to listen,

think, speak, read, write, spell or to do mathematicalcalculations."

The:Federal definition further states that learning dis-abilities include "suchconditions as perceptual disabilities,brain injury, minimal brain dysfunction, dyslexia, anddevelopmental aphasia." According to the law, learningdisabilities do not include learning problems that are pri-marily the result of visual, hearing, or motor disabilities;mental retardation; or environmental, cultural, or eco-nomic disadvantage. Definitions of learning disabilitiesalso vary among states.

Having a single term to describe this category ofchildren with disabilities reduces some of the confusion,but there are many conflicting theories about what causeslearning disabilities and how many there are. The label"learning disabilities" is all-embracing; it describes a syn-drome, not a specific child with specific problems. Thedefinition assists in classifying children, not teaching them.Parents and teachers need to concentrate on the individualchild. They need to observe both how and how well thechild performs, to assess strengths and weaknesses, anddevelop ways to help each child learn. It is important toremember that there is a high degree of interr'elationshipand overlapping among the areas of learning. Therefore,children with learning disabilities may exhibit a combina-tion of characteristics.

These problems may mildly, moderately, or severelyimpair the learning process.

Incidence

Many different estimates of the number of childrenwith learning disabilities have appeared in the literature(ranging from I% to 30% of the general population). Ln1987, the Interagency Committee on Learning Disabilitiesconclude 1 that 5% to 10% is a reasonable estimate of thepercentage of persons affected by learning disabilities. TneU.S. Department of Education (1993) reported that morethan 4% of all school-aged children received special edu-cation services for learning disabilities and that in the 1991-92 school year over 2 million children with learning dis-abilities were served. Differences in estimates perhapsreflect variations in the definition.

Characteristics

Learning disabilities are characterized by a significantdifference in the child's achievement in some areas, ascompared to his or her overall intelligence.

Students who have learning disabilities may exhibit awide range of traits, incl'iding problems with readingcomprehension, spoken langdage, writing, or reasoningability. Hyperactivity, inattention, and perceptual coordi-nation problems may also be associated with learningdisabilities. Other traits that may be present include avariety of symptoms, such as uneven and unpredictable testperformance, perceptual impairments, motor disorders,and behaviors such as impulsiveness, low tolerance forfustmation, and problems in handling day-to-day social

interactions and situations.

Learning disabilities may occur in the following aca-demic areas:

1. Spoken language: Delays, disorders, or discrepanciesin listening and speaking;

2. Written language: Difficulties with reading, writing,

and spelling;3. Arithmetic: Difficulty in perforrrdng arithmetic func-

tions or in comprehending basic concepts;

4. Reasoning: Difficulty in organizing and integratingthoughts; and

5. Organization skills: Difficulty n organizing_ all facetsof learning.

Educational Implications

Because learning disabilities are manifested in a vari-ety of behavior patterns, the Individual Education Program(IEP) must be designed carefully. A team approach isimportant for educating the child with a learning disability,beginning with the assessment process and continuingthrough the development of the LEP. Close collaborationamong special class teachers, parents, resource room teach-ers, regular class teachers, and others will facilitate theoverall development of a child with learning disabilities.

Some teachers report that the following strategies havebeen effective with some students who have learningdisabilities:

Capitalize on the student's strengths;Provide high structure and clear expectations;Use short sentences and a simple vocabulary;Provide opportunities for success in a supportiveatmosphere to help build self-esteem;Allow flexibility in classroom procedures (e.g.,allowing the use of tape recorders for note-takingand test-taking when students have trouble withwritten language);Make use of self-correcting materials, which pro-vide immediate feedback without embarrassment;Use computers for drill and practice and teachingword processing;Provide positive reinforcement of appropriate so-cial skills at school and home; andRecognize that students with learning disabilitiescan greatly benefit from the gift of time to grow and

mature.

Resources

Journal of Learning Disabilities. Available frpm Pro-Ed,8700 Shoal Creek Blvd., Austin TX 78758. Tele-

phone: (512) 451-3246.)

Silver, L. (1991). The misunderstood child: A guide forparents of children with learning disabilities (2nd ed.).New York, NY: McGraw Hill Book Co. (Availablefrom McGraw Hill Retail, 13311 Monterey Lane, BlueRidge Summit, PA 17294. Telephone: (717) 794-5461.)

Smith, S. (1981). No easy answers. New York, NY:Bantam Books. (Available from Bantam, 2451 SouthWolf Rd., Des Plains, IL 60018. Telephone: 1-800-223-6834.)

Organizations

Council for Learning Disabilities (CLD)P.O. Box 40303Overland Park, KS 66204(913) 492-8755

Division of Learning DisabilitiesCouncil for Exceptional Children1920 Association Dr.Reston, VA 22091-1589(703) 620-3660

Learning Disabilities Assn. of America (LDA)4156 Library RoadPittsburgh, PA 15234(412) 341-1515(412) 341-8077

National Center for Learning Disabilities99 Park AvenueNew York, NY 10016(212) 687-7211

National Network of Learning Disabled Adults(NNLD A)P.O. Box 32611Phoenix, AZ 85064(602) 941-5112

Orton Dyslexia SocietyChester Building, Suite 3828600 LaSalle RoadBaltimore, MID 21286-2044(410) 296-0232(800) 222-3123 (Toll Free)

Ills fact sheet is made possible through Cooperative AgreementitIICGOA30003 betwee:n the Acaderny,far Educational Develop-ment =tithe Office of Sped al Education Programs, US. Depart-ment ofEdncation; The content of this publicati cm do no tnerPs-c2r-

ily reflect the views orpolicies of tht Department of Edticati on, nor

does the mention or trade names, commercial products or organi-zations Imply endorsement by the US. Goveinment.

-

This information Is in the public domain unless otherwise indi-cated- Readers are encouraged to copy and share it, but pleasecredit the National Information Center for Children and Youthwith Disabilities (NICHCY).

UPDATE 11'93

For more information contact NICUCY.

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MISCONCEPTIONS ABOUT PERSONS WITH LEARNING DISABILTIES

MYTH - All students with learning disabilities are braindamaged.

MYTH - IQ-achievement discrepancies are easilycalculated.

MYTH >- Standardized achievement tests are the mostuseful kind of assessment device for teachers of students with

learning disabilities.

MYTH > We need not be concerned about the social-emotional well-being of students with learning disabilitiesbecause their problems are in academics.

MYTH The mosr serious problem of children who arehyperactive is their excessive motor activity.

MYTH - Medication for children with attention-deficitdisorder is over-prescribed and presents a danger for manychildren.

MYTH - Most children with learning disabilities outgrowtheir disabilities as adults.

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FACT - Although more students with learning disabilitiesshow evidence of damage to the central nervous system (CNS)than their nondisabled peers, many of them do not. Manyauthorities now refer to students with learning disabilities ashaving CNS dysfunction, which suggests a malfunctioning ofthe brain rather than actual tissue damage.

FACT A complicated formula determines a discrepancybetween a student's IQ and his or her achievement.

FACT - Standardized achievement tests do not providemuch information about why a student has achievement diffi-culties. Informal reading inventories and formative evaluationmeasures give teachers a better idea of the particular prob-lems a student is experiencing.

FACT Many students with learning disabilities do alsodevelop problems in the social-emotional area.

FACT Although children who are hyperactive do exhibitexcessive motor activity, most authorities new believe that theirmost fundamental problems lie in the area of inattention.

FACT > Some children receive medication who do notneed it, but there is little evidence that vast numbers are inap-propriately medicated. Medication can be an important partof a total treatment package for persons with attention-deficitdisorder.

r0

FACT - Learning disabilities tend to endure into adulthood.

Even most of those who are successful must learn to cope with

their problems and show extraordinary perseverance.

pAekItIg VL lb? Af-iy,fif

I CORDER 0

LiNEICher still can't spell orunderstand the wordson a billboard. Shehas trouble dialing thephone and makingchange. At the age of30 her problem wasdiagnosed as dyslexia."Sometimes I feel sostupid. I don't knowwhat I'd do if I had aregular job," she says.Here, for the first time,Cher talks about thedisability that hascaused her such pain.

13

Cher, who has always exposed herself tomerciless criticism for her hairdos, herclothes and her men, has recently openedherself up to further pain and humiliation byadmitting publicly that she suffers from dys-lexia. "I'm insecure. about everything. Itdoesn't take much to shake my confidence tothe bone," she says, and little wonder. Thesimplest tasks still baffle her. Her dyslexiamade her school years a nig.htmareshedropped out in Ilth gradeand her actingcareer a struggle. Yet she his successfullymanaged to establish herself as an actressand is finally, at the age of 40, gaining therespect that has eluded her for so long.

Q How dld you feI whn you firstfound out that you had dyslexia?A. Suddenly things made a lot of sense. I

never read in school. The first book I everread was when I was 18 or 19 years old, andit wits called The Saracen Blade by FrankYerby. When I was in school, it was reallydifficult. Almost everything learned, I hadto learn by listening. I just couldn't keep upwith everybody else. You can be really intel-ligent. but if you don't have a way of lettingpeople know, you sem really stupid. My re-port aids always said that I was not livingup to my potential. Teachers would see thatI wa.s a bright girl in class, and then I wouldhand in papers that you couldn't read. Also,I could never do the work quickly enoughmost of the tests were timed.

sitting there one day and I just got up andsaid, "I'm not going back."

Q les understandable that youwouldn't lik school If you wre havingsuch a hard time.A. Well, I believe that, for the most part,school is a very boring place-for very brightminds, you know? I think what school dccshalf the time is cut out your creativity and;rust make you fit into society. I don't'thinkschool is the place to really learn very much.It's evident if you see what's happening in thecountryyou know, there arc so many peo-ple who can't pass a civil service exam, orcan't read. In Les Angeles, inst=d of usingthe word Walk [cn street signsI, they show a

person walking, because some people can'tread a sign.

Q When was your dyslexia condi-tion fIrst diagnosed?A. When I was 30.

Q. You found out about it when youtook Chastity to b tested?A. Yes. She's very intelligent, but she justdid so badly in school, and she VelS havingsuch a hard time. Then I sent her to a specialschool, which was really a drag, because a lotof the kids in the school had emotional prob-lems and she doesn't. But she just felt thatshe was stupid because her oral scores wereso much higher than her written scores.

Qe What dld you do next?A. One of the doctors who had tested herrecommended that I take her to a dysle-xia

iter in Santa Monica. When I went inthere, I said to the lady, "I know Chastity isreally smartshe's just like me." The wom-an said, "What do you mean:" and we start-ed talking about it, a.n.d.that's whcn we foundcut we both had it.

Q. Now that Chastity understandsthe problem, sho molt foul Setter.A. Yea she feels a lot better. She's now gc,

CI What were your grades like?A. They were ve-y.sporadic. I got really bedgrades-1).s and Fs and Csin some class-=, and A's :nd B's in other classes. Mymother would get exasperated with me some-times: She just could not understand why Icould do so well in one class one semesterand fail the nest semester. And I never couldunderstand it either. Some things were sodifficult. But eventually I kit schoolin thesecond week of I Ith grade. I just quit. I was

BY LINDA KONNER

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1=211.....111=IL"I COULDN'T READUNTIL I WAS 18"continued from page 125

Q. Did you explain why?A. Not really, because it was a tense (fibment. It was terrible. I didn't get the part!

Q. How do you feel about doing cold read-"ings for directors now?A. I wouldn't do them now. I would nevercold read for anybody. Look. in Mask [test-ed. and I k......; ..vhat I was doing. It's like, Isaw a show once where they were looking forjap dancers. There was this little boy fromSpain. and he needed a job, and he was aflamenco dancer. He tried to tap dance, buthe couldn't do it. But then, when he didwhat he could do. he did it better than all thepeople that were trying out for the tap danc-ing job. So it just wouldn't make sense forme to try to cold read if what thcy wanted todo was see what I did weil.

Q. Now thot there's no pressure on you toread, do you ever read for pleasure? Or isit still a struggle?A. I read for pleasure constantly. ['rn r=d-ing four books right now. I'm reading 77,eMammoth Hunters: I read the first two IleanAuei books]. I'm reading The Vampirr Les-ter. I'm reading Goddas and Drama of theGifted Child, a psychology book my boy-friend Josh (Donen] gave me.

Q. How do you feel now that the publicknows about your dyslexia?A. I could care less.

they love you. But what about the com-ments they may hear about you from theirfriends, or from strangers?

Cha.s goes to a school where the studentsare actors and actresses, and they're all pret-ty much into the work I do. Chas is reallywell-liked in school for herself, but I also re-member that when Mask came out: herfriends said, "Oh, Chas, I loved your mom inthe movie." You know, lots of her friendshave Mohawks. Kids are not as judgmentalas adults. So most of Chas' friends think I'mreally cool becau.st I'm an adult, but I don'texactly look like an adult ... whatever that'ssupposed to mean.

As For Elijah ... One day he came homeand he was really upset. He said, "So-and-so's grandmother said you're a whore." AndI said. "Well, that's interesting. What didshe base that on?" And he said, "I don'tknow, but I'm not going to talk to him any-more." We talked about it for a long timc Icould tell he was pretty upset. But later, hecame to the conclusion that he lives with meand he knows what kind of person I am. Herealized that this woman was having a roughtime in her life, and that it didn't have muchto do with him or me.

Q. What about your feelings about yourimage in general?A. The way I dress and the way I look aremy sense of expression and creativity; I don'tfeel like stifling that for anybody. I mein. Iwas going to get a Mohawk haircut one time,and Chastity threw herself against the door.She said. "You know, you should be doingthis to me. I should be the one that wants aMohawk, and you should be saying no." It'slike, if Cha.s wants to dye her hair green andpurple, it shouldn't make any difTerenc it'san expression of who she is. It's like that forme too. So I have a molar reputation. It'samazing what a hairdo can give youl Peoplethink I'm really crazy because of the way Ilook. I think that's ... crazy.

Q. How do you think your Image affeesyour children?A. I think they're much cooler than mostp-eople. I think they're both very proud ofme. They think I'm outrageous, and theylaugh at the way I am sometimes; they get akick out of me.

Q. Perhaps they an understand the wayyou drms because you're their mother and

7 tteioct 19s4

Q. How did she take it?A. She wasn't crazy about it at all.

Q. Does Chastity generally accept youbetter than Elijah does?A. Yes. I think boys are just so much morevulnerable than girls. Chastity's always hadthe most amazing inner strength. She's nev-er really liked (other] kids that much; she'salways been around adults and had an adultkind of philosophy about things. The onlything I can ever remember hcr being reallyupset about lately was when she got into theHigh School of Performing Arts. Right af-terward the school got all this video equip-ment, and some kids started a rumor thatChastity got in because I bought all theequipment. She was really angry about that.But I don't think the way I've led my life hasinterfa-ed with her that much. It might havewhen we were back in California, when I wasleaving her father. I know that was a realdifficult time for hes.

Q. It must be hard for a child to hear thather parents don't like each other.A. Oh, I'm sure of it. But, the truth is, youcan only be hurt in your life by someone somuch, and then you have to protect yourselfor it doesn't make any sense. For me to bearound Sonny is like walking into a fire_

Q. How would you describe the relation-ship you had with Sonny?A. It was like I was a black person workingon a plantation for a benevolent boss. With-out your freedom, it doesn't make any differ-ence who your master is. For a long time. Iacted toward him in a way that was very dif-ferent from the way I felt. And I'm sorry Ifeel this wayI would prefer to be absolute-ly friendly and enjoy being around him. Itwould make my life a lot easier. But I don'tthink I ever knew Sonny at all. First of all,what can you know at 16? Not very much.But also, he didn't want to share himself. Hethought that if I knew about him, I wouldhave some kind of power that he just wasn'tready,to give up. That's something we all do.but [to be doing that for] 11 years is a longtime. I mean, if you can't trust someone ...He was 28 when I met him, and he'd beentrying for 10 years to be a singer. Then, all ofa sudden, in a matter of a year, we becamefamous. He said that he knew from the timehe saw me that it was going to happen. Buthe was always afraid that if I knew I wastalented or pretty or any of the other thingshe thought I was, that I would leave him.I've been working on a song for a new album;it's really autobiographical. I've got oneverse in there about Sonny he's not going tolike at alL It goes:

He stole life and heart and beauty,Said he did it for my good.Said he always knew I'd leave him,So he crushed me while he could.There's no answers, there's no justimThere's just eycs too blind to cry.It's no wonder I'm the phoenix,

. My salvation that I've died.Q. How dld you explain your breakupwith Sonny to Oustity?A.:Well, until recently--rnaybe a couple ofyears agoI never said very much to herabout Sonny. I try to be really positive. be-cause she felt bad that he hadn't done as well(as I had] after the breakup. One day shewas giving me some flak because I didn't in-vite her father to somethingand I said,"You know, I've never said anything badabout your father and I've never gone intoany of the reasons. But you're old cioughfor me to tell you that it's impossible for mcto be friends with your father, because I justdon't like him"

Q. How old was she when you said that?A. About l5si.

i) 0

Q. You feel then that he withheld fromyou the encouragement you really needed?A. You know, it was strangehe gave it oncertain levels, like on a work level. He wasalways saying, "You can do it" (about mywork). Tnat's why we made better (business],partners than husband and wife. If we hadonly stuck to working together, it wouldhive been great.

Q. What do you think about the wholeIdea of marriage now?A. Marriage doesn't interest me. It would ifit was important to someone that I caredabout. As something that I'm seeking? I

don't know if it works for me, I don't knowif Im ready to be married.

(continued on page 177)

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"I COULDN'T READUNTIL I WAS Is"connnued from page 174

Q. Even as you turn 40, even after twomarriages?A. As I was turning 30 I was a lot moreready to be married; I was married (to rocksinger Gregg Allman]. Marriage sounds fab-ulous in theory. But thc kind of work I'm inis not exactly noted for long-lasting relation-sh0 of any kind.

Q. Would you say your work makes youself-centered?A. I'm certainly self-centered. but I'm really

\giving in a relationship; while I'm in it, it'svery important. I mean, I'm not perfect, butas a partner I think I'm really loving and giv-ing. It's just that it only lasts so long.

Q. Does that mean you don't think any-body can sustain a good relationship overa long period of time?A. Look, I sustained a bad relationship overa long period of time. The older I get, theless patience I've got for sustaining anythingthat doesn't work over a long period of time.If it workedand I'm willing to work onthingsI would be in it for a long time. ButI also want to be creative, and I don't knowthat creativity necessarily has too much to dowith marriage. I also like to spend a lot oftime alone.

relationships are publicized.

Q. What's your ideal man like?A. rye just been with the ideal man. Hisname is Josh Donen, and he's the most fabu-lous man I've ever known. He's bright, we'rein the same business (he's a movie producer),we've got everything to talk about, he's hand-some, he cracks me up constantly, he's a fab-ulous father to my kids. There's nothingwrong with him. Even my mother is crazyabout him. She says, "Cher, come home toCalifornia. Don't stay irt New York; are youcrazy? What's the matter with you?" I'venever met anybody like him. He's like adream man. He's a prince.

Q. So what's the problem?A. His work keeps him stuck in LA.; he hasan extremely demanding job. And wheneverI come to New York, I really want to behere_ It's so hard for me to live in Los Ange-les; I really don't like it there. Also he wantsto get marriedand that just really scaresme to death.

Q. If there were one thing about yourselfthat you could change, what would it be?A. I would not want to be so insecure. Thatinsecurity stifles everything. As I go on inlife, I become mort secure in some areas andless secure in others that I used to be moresecure in. I guess it's a trade-off.

Q. What are you most insecure about?A. Everything from my ability as an actressto my ability as a mother to how I look. Itdoesn't take much to shakc my confidence tothe bone. But thcn I keep coming back. So,if I'm going to keep coming back. I wouldjust like to tell myself once and for all that I'llbe okay, so I don't have to k=p goingthrough the drama.

Q. Do you think your ability to bounceback makes people like you?A. Yes. I'm a survivor, and people respectthat. You know, I via; about as down andout as anyone can be in my profession (afterthe TY shows went ofi- the air], and all of asudden, I just came back to life. I've donethat a whole bunch of times. Also, peoplekind of like me in spite of myself.

Q. What do you mean?A. I'm one of those people that's kind of lik-able you just kind of like them. For in-stance, when I go on the Donahueshow, Ialways think. "Oh, these worn= are going tokill me." And yet, they don't. Part of it is

because I'm not totally full of sh..... I don'treally hide my mistakmI mean, it wouldbe impossible to try to hide thcm. But I feellike I have some kind of special dispensation.People like me in spite of the fact that if theysaw me walking down the street and I wasn'tCher, they wouldn't like me at all.

Q. How do you spend your time alone?A.1 like to rcad. I like to exercise. I like towrite. 1 like the freedom of not having toanswer to anybody. You know, I think thatbeing with Sonny did a lot of things that werenot so healthy for meI mean, I had to havea reasonable place to go to before I could (getpermission from Sonny to] go out of thehouse. And because of that, I've had a bigbacklash. I don't want anybody to ask mewhere I'm goingif I want to go someplace,I really want to do it. Thank God, I have mykids; kids are usually so much more under-standing than husbands. For example, whenI wa.s doing Mask. I would get up at 5:30 inthe morning, and I would work out for anhour until I was picked up to go to the stu-dio, I would come home at 7:30 at night, andI would fall into bed. I couldn't give any-thing to anyone. The kids would come andsit on the bed, and we'd talksometimes I'dfall asleep talking. I didn't even have thatmuch energy to give them on weekends. It'shard to explain that to a man, because he'dtake it personally.

Q. Does your wanting to stay single haveanything to do with sexa desire to avoidsexual fidelity?A. No. I'm so monogamous it's disgusting.I'm not very liberated or New Age; if I findsomebody that I really like, I just don't wantto be with anybody else. I'm not a dater atall. I have such a reputation; it's just that my

PERK UPA

POTATOOne potato. Two potato. Three potato. Four. When you add

Campbell's° Cheddar Cheese Soup, four potatoes becomemore than potatoes. Here's a Campbell's recipe that will perkup your potatoes:

I can (11 oz.) Campbell's 2 tbsp. sour creamCondensed Cheddar 1/1 tsp. Dijon mustardCheese Soup 4 large baked potatoes

I cup cooked broccoli flowerets Chopped pimiento

In l'h qt. saucepan over medium heat, stir soup. Stir in'broccoli, sour cream and mustard. Heat thoroughly; stiroccasionally. Split potatoes: fluff with fork. Serve sauce overpotatoes. Garnish with chopped pimiento. 4 servings.

CAMPBELL'S SOUP MAKES GOOD FOOD

CheddarCheese

4.4setats.. foranwiwareaorp*V.P.P4,se-r.`%44-4440,'Vr

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VIII. Visual Impairments

General Information about Visual Impairments(NICHCY Fact Sheet)

Misconceptions about Persons with VisualImpairments

How Not to Help A Person Who is Blind and Lost

Mainstreaming Case History: Troy was Blind

America's Boswell Drives Into the Dark

NICHCYrac: Sneet Number 13 (FS13) 13

Nationel Informnation Center for Children and Youth with DisabilitiesP.O. Box 1492, Washington, D.C. 20013-1492

1-800-695-0285 (Toll Free) (202) 416-0300 (Local, Voice/IT)SpecialNet User Name: NICHCY ** SCAN User Name: NICHCY

General Information About

VISUAL IMPAIRMENTS

Definition

The terms partially sighted, low vision, legally blind,an,cl totally blind are used in the educational context todescribe Etudents with visual impairments. These terms aredefined as follows:

"Partially sighted" indicates some type of visualproblem has resulted in a need for special educa-tion;"Low vision" generally refers to a severe visualimpairment, not necessarily limited to distancevision. Low vision applies to all individuals withsight who are unable to read the newspaper at anormal viewing distance, even with the aid ofeyealasses or contact lenses. They use a cornbina-(ion of vision and other senses to learn, althoughthey may require adaptations in lighting, the size ofprint, and, sometimes, braille;"Le2ally blind" indicates that a person has lessthan 20/200 vision in the better eye or a verylimited field of vision (20 degrees at its widestpoint); andTotally blind students, who learn via braille orother non-visual media.

Visual impairment is the consequence of a functionalloss of vision, rather than the eye disorder itself. Eyedisorders which can lead to visual impairments can includeretinal degeneration, albinism, cataracts, glaucoma, mus-cular problems that result in visual disturbances, cornealdisorders, diabetic retinopathy, congenital disorders, andinfection.

Incidence

The rate at which visual impairments occur in individu-als under the age of 18 is 12.2 per 1,000. Severe visualimpairments (legally or totally blind) occur at a rate of .06per 1,000.

Characteristics

child. Many children who have multiple disabilities mavalso have visual impairments resulting in motor, cognitive,and/or social developmental delays.

The effect of visual problems on a child's developmentdepends on the severity, type of loss, age at which thecondition appears, and overall functioning level of the

A young child with visual impairments has little reasonto explore interesting objects in the environment and, thus,may miss opportunities to have experiences and to learn.This lack of exploration may continue until learning be-comes motivating or until intervention begins.

Because the child cannot see parents or peers, he or shemay be unable to imitate social behavior or understandnonverbal cues. Visual disabilities can create obstacles toa growing child's independence.

Educational Implications

Children with visual impairments should be assessedearly to benefit from early intervention programs, whenapplicable. Technology in the forma computers and low-vision optical and video aids enable many partially sighted,low vision, and blind children to participate in regular classactivities. Large print materials, books on tape, and braillebooks are available.

Students with visual impairments may need additionalhelp with special equipment and modifications in theregularcurriculum to emphasize listening skills, communi-cation, orientation and mobility, vocation/career options,and daily living skills. Students with low vision or thosewho are legally blind may need help in using their residualvision more efficiently and in working with special aids andmaterials. Students who have visual impairments com-bined with other types of disabilities have a greater need foran interdisciplinary approach and May require greateremphasis on self care and daily living skills.

Resources

American Foundation for the Blind. (1993). AFB directory ofservices for blind and visually impaired persons in the UnitedStates and Carocla (24th ed.). New York, NY: Author.

Curran, E.P. (1988). Just enough to know better (A braille primer). 1

Boston, MA: National Braille Press.

4

Dodson-Burk, B., & Hill, E.W. (1989). An orientation andmobility primer for families and young children (Item1576). New York, NY: American Fouidation for the Blind.

Ferrell, K.A. (1985). Reach out and teach: Materials for parentsof visually handicapped and multr-handicappedyoung chil-dren (Item 2084). New York: American Foundation forthe Blind.

Hazekamp, J., & Huebner, K.M. (1989). Program planning andevaluation for blind and visually impaired students: Na-tional guidelines for educational excellence (Item 155x).New York, NY: American Foundation for the Blind.

Holbrook, M.C. (Ed.). (in press). Children with visual impair-\ments: A parents' guide. Rockville, MD: Woodbine. [Tele-

- phone: 1-800-843-7323 (outside DC area); (301) 468-8800(in DC area).)

Huebner, K.M.,& Swallow, R.M. (1987). How to thrive, not justsurvive: A guide to developing independent life skills forblind arid visually impaired children and youth (Item 1487).New York, NY: American Foundation for the Blind.

Scott, E., Jan, J., & Freeman, R. (1985). Can't your child see?(2nd ed.). Austin, TX: Pro-Ed. [Available from Pro-Ed, at(512) 451-3246.)

Organizations

American Council of the Blind Parentsc/o American Council of the Blind1515 15th St. N.W., Suite 720Washington, D.C. 20005(202) 467-5081; (1-800) 424-8666

American Foundation for the Blind15 West 16th StreetNew York, NY 10011(212) 620-2000; (1-800) AFBLEND (Toll Free Hotline)For publications, call: (718) 852-9873

Blind Children's Center4120 Marathon StreetLos Angeles, CA 90029-0159(213) 664-2153; (1-800) 222-3566

Division for the Visually Handicappedc/o Council for Exceptional Children1920 Association DriveReston, VA 22091-1589(703) 620-3660

National Association for Parents of the VisuallyImpaired, Inc.P.O. Box 317Watertown, MA 02272(817) 972-7441

National Association for Visually Handicapped22 West 21st Street, 6th FloorNew York, NY 10010(212) 889-3141

National Braille Association. Inc. (NBA)1290 University AvenueRochester, NY 14607(716) 473-0900

National Braille Press88 St. Stephen StreetBoston, MA 02115(617) 266-6160; (1-800) 548-7323

National Eye InstituteNational Institutes of HealthU.S. Department of Health & Human ServicesBuilding 31, Room 6A32Bethesda, MD 20892(301) 496-5248

National Federation of the Blind, Parents Divisiondo National Federation of the Blind1800 Johnson StreetBaltimore, Iv° 21230(410) 659-9314

National Library Services for the Blind and PhysicallyHandicapped .

Library of Congress1291 Taylor Street, N.W.Washington, D.C. 20542(202) 707-5100; (1-800) 424-8567

National Retinitis Pigmentosa Foundation1401 Mt. Royal Avenue, Fourth FloorBaltimore, MD 21217(410) 225-9400; (410) 225-9409 (TT)(1-800) 683-5555 (Toll Free)

National Society to Prevent Blindness500 E. Remington RoadSchaumburg, IL 60173(708) 843-2020; (1-800) 221-3004 (Toll Free)

l'his fact sheet 'made' Possible through .COOPerative Ageensent111-1030A30003 between the Academy for Educational Development and

. the 9flict of Special Education Programs, U.S. Department of Ed.nca--..tion:Tbe contents ofthisPublication do notVercesiarily reflect the views:Or p011cies of the Department of Education, nor does mention Of tradenames; commercial products or organizations imply endorsement by

:the U, S. Government.. . , .

This Information It In the. public domain tmlms otherwise. Indicated.Readers are encouraged to copy and share lt, but please credit theNational Information Center for Children and Youth with Disabilities(NICTICY).

For more information contact NICIICY. UPDATE 12/93

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MISCONCEPTIONS ABOUT PERSONS WITH VISUAL IMPAIRMENTS

MYTH > People who are legally blind have no sight at all.

M"i TH >- People who are blind have an extra sense thatenables them to detect obstacles.

MYTH > People who are blind automatically developbetter acuity in their other senses.

MYTH >- People who are blind have superior musicalability.

MYTH > Braille is not very useful for the vast majority ofpeople who are blind; it should only be tried as a last resort.

MYTH >- Braille is of no value for those who hove lowvision.

MYTH >- If people with low vision use their eyes too much,their sight will deteriorate.

MYTH > Mobility instruction should be delayed until ele-mentary or secondary school.

MYTH >- The long cane is a simply constructed, easy to usedevice.

MYTH >- Guide dogs take people where they want to go.

FACT >- Only a small percentage of those who are legallyblind have absblutely no vision. Many have a useful amountof functional vision.

FACT >- People who are blind do not have an extra sense.Some can develop an "obstacle sense" by noting the changein pitch of echoes as they move toward objects.

FACT - Through concentration and attention, individualswho are blind can leorn to make very fine discriminations inthe sensations they obtain. This is not automatic but ratherrepresents a better use of received sensations.

FACT >- The musical ability of people who are blind is notnecessarily better than that of sighted people but many peoplewho are blind pursue musical careers as one way in whichthey can achieve success.

FACT >- Very few people who are blind hove learned Braille,primarily due to fear that using Braille is a sign of failure and toan historical professional bias against Braille. Authoritiesacknowledge the utility of Braille for people who are blind.

FACT >. Some individuals with low vision have conditionsthat will eventually result in blindness. More and more, authori-ties think that these individuals should learn Braille to be pre-pared for when they cannot read print effectively.

FACT >- Only rarely is this true. Visual efficiency can actuallybe improved through training and use. Wearing strong lenses,holding books close to the eyes, and using the eyes often cannot

harm vision.

FACT >- Many authorities now recognize that evenpreschoolers can take advantage of mobility instruction, includ-

ing the use of a cane.

FACT >- The tlational Academy of Sciences has drawn up

specifications for the manufacture of the long cane and using it

properly.

FACT >- The guide dog does not "take" the person any-where; the person must first know where he or she is going.The dog is primarily a protection against un5ofe areas orobstacles.

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6;)

,..e ; A!'s<1??1,'>... - -

W NOT TO HELP-A-PERSON WHO IS-BLINDAND.LOST:-=-)="

When the sighted encounter someone who is lost, theirnatural inclination is to ask the person where he or she isheaded. As the following entry in the diary of John M. Hull(1990) indicates, this question can lead to confusion when theperson lost happens to be blind.

GETTING LOST 8 November

I think it is David Scott Blackhall, in his autobiography TheWay I See Things (London, Baker, 1971), who remarkshow annoying he fo.und it when people refused to answerhis question about where he was and insisted on askinghim where he was trying to get to. I share this experience.

Going home the other night I was turned out of my wayby some construction work on one of the footpaths. Bymistake I turned along a side street, and after a block or so,when I realized I had made a mistake somewhere, I wasnot sure exactly where I was. There were some chaps work-ing on a car parked on the roadside. 'Excuse me', I said.'Could you tell me please where I am? What is the name ofthis street?'

The chap replied, Where are you trying to get to?'With what I hoped was a good-humored laugh, I said,

'Never mind aLout that, just tell me, please, what street thisis?'

'This is Alton Road, You usually go up BournbrookRoad, don't you? It's just a block further along.'

I thanked him, and explained that I needed now to knowexactly whereabouts on Alton Road I was so that I could getto Boumbrook Road. 'Which side of Alton Road am I on? IfI face that way, am I looking towards Bristol Road or is itthe other way?'

'You live high up Bournbrook Rood, don't you? Well, ifyou toke.the next road to the left you'll be OK.'

But which way is 'left'? Does-he mean me to cross therock: or to stay on this side? At this point, the blind andsighted enter into mutual bafflement.

When a sighted person is lost, what matters to him orher is not where he is, but where he is going. When he istold that the building he is looking for lies in a certain direc-tion, he is no longer lost. A sighted person is lost in thesense that he does not know where the building he is look-ing for is. He is never lost with respect to what street he isactually on; he just looks at the street sign on the corner ofthe block. It is his direction he has lost, rather than hisposition. The blind person lost has neither direction norposition. He needs position in order to discover di ection.This is such a profound lostness that most sighted peoplefind it difficult to imagine.

SOURCE: From Touching the rock by John M. Hull. Copyright CI

1990 by John M. Hull. Reprinted by permission of Pantheon Books,a division of Random House, Inc., pp. 144-145.

6 i)

t1°P

CASE HISTORY

41(-

TROY 4111bi

'ALTHOUGH I'D BEEN TEACHINGfor more than 10 years, I wasapprehensive about having ablind student in my class. Howwould I adapt my lessons tomeet Troy's needs and my otherstudents' needs? How could Troyparticipate in all our activities?

My state's school for the blindwould provide braille textbooksfor Troy. But the school didn'tprovide braille work sheets orsupplementary materials, so Ihad to either send these to theschool to be converted to brailleor figure out a way to adaptthem. And I always needed abackup plan in case the materi-al's didn't arrive in time.

When I met Troy, I found himto be friendly, outgoing, and ea-ger to learn. He quickly foundhis way around, and I could tellby his facial expressions that hewas excited to be in school.

I soon realized that Troy wasan extremely skillful listener. Iplanned more oral lessons andtests so Troy could work withthe rest of the class. His listen-ing skills saved the day oncewhen we completed our assign-ments early and the other stu-dents asked to read a play. Wedidn't have a braille copy, but Iasked another student to prompthim, and Troy was able to play apart. His face glowed.

Our unit on graphs and dia-grams brought new challenges.But I was able to make this unittactile so Troy could read the in-formation. I made circle graphsusing heavy-duty aluminum foil

Troy may have been born blind,but when he entered Eileen

Walcik's 7th-grade reading classat Smith Middle School, he

could see his goal clearlyto bethe same as the other students.

All his life, Troy had workedextra hard to keep up with kidshis age. He'd taught himself to

skateboard, mastered thedrums, and learned music by

ear. Now, at the age of 13, fittingin had become even more

important. WaIcik quickly foundthat the challenge of helpingTroy required her to see new

ways of doing things.

TROYWASBLIND

6i

and a dressmaker's wheel andbar graphs using tiny pinprickson heavy braille paper. Theschool for the blind added thestatistics in braille.

I used textured materials tomake diagrams for Troy. For oneunit, I made a diagram of rocklayers using a smooth section,one with dots of glue, and onewith tiny pinpricks.

Because Troy couldn't see thepictures in our books, I had hisclassmates describe them to himin detail. Not only did Troy un-derstand the information better,but so did the rest of the class.

Art is an area that's tradition-ally closed to blind students. Mystudents loved illustrating storieswe read, and I could see thatTroy wanted to try drawing too.When we read The Lion, theWitch, and the Wardrobe, I foundI had a tape of songs to go withthe book. I gave my students pa-per and asked them to closetheir eyes, listen, and draw tothe flow of the musicall with-out peeking. Troy was excitedwhen the other students foundpictures in his drawing.

Throughout that school year,my class and I learned to look atour world in a new way. Troytaught us that, with some extraeffort, a positive attitude, and alittle help from friends, a blindstudent could do anything wecould doand more. 0

Eileen Wokik teoches 6th- crd 7th.grode Englishand reading (talented ond ged) al Smith MiddleSchool in Fort Hood, Tex.

lEARNZNG9 3, 0C100ER

,4.4% .S.',Ate El nonice: krr%am, SlintEmobairawl yr.

DUDLEY DOUST ON A REMARKABLE PLAYER

After he had stooped to feel the texture of the grass, and fingerthe edge of the cup, Charley Boswell paced with his caddieacross the green to his ball. He counted as he went .. . 48,49, 50 feet. "It's mostly downhill," said his caddie, crouchingto line up the face of Boswell's putter. 'Take off about 10 feet,and putt it like a 40-footer."

Boswell stroked the ball. It sped across the green, climbedand fell, curved, slowed down and dropped with a rattle intotbe hole. Boswell grinned: "Did you see that one?" Yes, I hadseen it. But he hadn't. Charley Boswell is blind. In fact, he isone of the most remarkable blind sportsmen in the world andplaying off a handicap as low as 12, he has won the UnitedStates Blind Golfers' Association Championship 17 times.

Putting, oddly enough, is one of Boswell's strong depart-ments. Given, of course, the fact that his caddie reods the putt,his execution is immaculate. "A tip that we blind golfers conpass on to the sighted player," he said, "I don't worry aboutthe breoks on a green. Don't try to curb your putt because, asBobby Jones always said, every putt is a straight putt and letthe slopes do the work."

A few.weeks ago I met Boswell in California, where he wasplaying a benefit match for the Braille Institute of America. Hehad come up from Alabama, where he is the StateCommissioner in the Department of Revenue, a remarkableenough job, and now he was walking to the second tee on acourse in the lush Coachelle Valley. A wind blew down fromthe mountains. "Funny thing," he said, "wind is really the onlything that bothers me. It affects my hearing, and that ruins mysense of direction."

On the second tee his caddie, who is his home professionalback in Alabama, lined up the face of Boswell's driver andstepped away. Boswell, careful not to lose this alignment, didnot waggle his clubhead. He paused, setting up some innerrhythm, and swung with the certainty of a sighted player. Hegroaned as the ball tailed off into a slice.

"There are two ways I can tell if I hit a good shot," he said,frowning. "I can feel it through the clubhead and, more impor-tant, I finish up high on my follow-through. Come on, let'swalk. I can't stand golf cartsthey bother my judgment ofdistance."

6

Boswell has been walking crown darkened fairways sinceshortly after the Second World War. Blinded when a Germonantitank gun scored a direct hit on his vehicle in the Ruhr, hewas sent back to an American hospital for rehabilitation. Aformer gridiron footballer and baseball player, Boswell did n-ittake easily to pampered, supervised sport.

"I tried swim -ning, and it bored me. I tried horseback ridinguntil I rode under a tree and got knorked off. I tried ten-pinbowling, and that wasn't any good eitherI fell over the ball-track." He laughed, idly swinging his club as he walked. 'Thenone day this corporal came in and suggested we ploy golf. Itold him to get the hell out of my room."

Boswell hod never swung a golf club in his life but, a fewdays later, aged 28, he gave it a try: "He handed me abrassie. I took six practice swings, and then he teed one upand I hit it dead centre, right out of the sweet spot. I tell you, Iwas lucky. If I'd missed the ball that first time I would have quitgolf." There are no false heroics about Boswell.

Some holes later he, or rather we, found his ball in abunker. The bunker shot wos clearly the most difficult shot inBoswell's bag. Playing it required him to break two Rules ofGolf: he not only needed his usual help from someone to lineup his club but, to avoid topping the ball, or missing it alto-gether, he had to ground his club in the sand. "Also, I can'tget fancy and cut across the ball," he said. "I have to swingsquare to the line of flight. I have to play it like an ordinarypitch."

These handicaps, he later pointed out, were in part counter-balanced by the actual advantages of being blind on a golfcourse. Boswell, for instance, is never tempted to play a nine-iron when a seven-iron will do the job. "In a match blind play-ers ploy the course, not their opponents, because we can't seewhat they're dcing anyway," he scid, on the way to a score of91 which, for urn, was neat but not gaudy. "You know, I wasonce playing with Bob Hope, and he said: 'Charley, if youcould see all the trouble on this golf course, you wouldn't beplaying it.' And I suppose he was right."

SOURCE: Dudley Doust, Sunday Tmes, London, February 6, 1977.Reprinted by permission.

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IX. Hearing Impairments

- Deafness: A Fact Sheet (NICD Sheet)

- Misconception about Persons with HearingImpairments

- Up To The Challenge

f

This fact sheet

Introduction

416-02,11v,

DEAFNESS: A FACT SHEETwas written cooperatively by the National Information oenter on Deafness

and the National Association of the Deaf.

An estimated 21 million Americans have somedegree of hearing impairment. Hearing impairmentsaffect individuals of all ages, and may occur at anytime from infancy through old age. The degree of lossmay range from mild to severe. This variability in ageat onset and degree of loss plus the fact that eachindividual adjusts differently to a loss of hearingmakes it impossible to define uniformly the conse-quences of a loss.

Although the National Center for Health Statisticsthrough its Health Interview Survey has been able toIstimate the number of people with hearing impair-ments, there have been no recent national surveyswhich can be used to estimate the number of peoplewho are deaf. As a result, estimates for the numberof deaf people range anywhere from 350,000 to twomillion.

Audiological/Medical information

There are four types of hearing loss, each of whichcan result in different problems and different possi-.bilities for medical and nonmedical remediation.

CoriductIve hearing losses are caused by diseasesor obstructions in the outer or middle ear (the con-duction pathways for sound to reach the inner ear).Conductive hearir.g losses usuany affect evenly allfrequencies of hearing and do not result in severelosses. A person with a conductive hearing loss usual-ly is able to use a hearing aid well, or can be helpedmedically or surgically.

Sensorineural hearing losses result from damageto the delicate sensory hair cells of the inner ear orthe nerves which supply it. These hearing losses canrange from mild to profound . They often affect cer-tain frequencies more than others. Thus, even withamplification to increase the sound level, the hear-ing impaired person perceives distorted sounds. This

GIlaudat Unhlorsity 1464, 1967. 19%

distortion accompanying some forms of sen-sorineural hearing loss is so severe that successfuluse of a hearing aid is impossible.

Mixed hearing losses are those in which theproblem occurs both in the outer or middle and theinner ear.

A central hearing loss results from damage or im-pairment to the nerves or nuclei of the central nervoussystem, either in the pathways to the brain or in thebrain itself.

Among the causes of deafness are heredity. acci-dent, and illness. An unborn child can inherit hearingloss from its parents. In about 50 percent of all casesof deafness, genetic factors are a probable cause ofdeafness. Environmental factors (accident, illness,ototoxic drugs, etc.) are responsible for deafness inthe remaining cases. Rubella or other viral infectionscontracted by the pregnant mother may deafen an un-born child. Hazards associated with the birth process(for example, a cut-off in the oxygen supply), may af-fect hearing. Illness or infection may cause deafnessin young children. Constant high noise levels cancause progressive and eventually severe sen-sorineural hearing loss, as can tumors, exposure toexplosive sounds, heavy medication, injury to theskull or ear, or a combination of these factors.

Central hearing loss may result from congenitalbrain abnormalities, tumors or lesions of the centralnervous system, strokes, or some medications thatspecifically harm the ear.

The detection and diagnosis of hearing impairmenthave come a long way in the last few years. It is nowpossible to detect the presence of hearing loss and

evaluate its severity in a newborn child. While medi-cal and surgical techniques of correcting conductivehearing losses have also improved, medical correc-tion for sensorineural hearing loss has been more elu-

sive. Current research on a cochlear implant whichprovides electrical stimulation to the inner ear may

lead to important improvements in the ability to med-

ically correct profound sensorineural hearing loss.

Educational Implications

Deafness itself does not affect a person's intellec-al capacity or ability to learn.:-Yet, deaf children

generally require some form of special schooling inorder to gain an adequate education.

Deaf children have unique communication needs.Unable to hear the continuous, repeated flow of lan-guage interchange around them, deaf children are not

-aeitomatically exposed to the enormous amounts of-..----language stimulation experienced by hearing children.Zduring their early years. For deaf children, early, con-° sist6nt, and conscious use of visible communication

modes (such as sign language, fingerspelling, andCued Speech) and/or amplification and aural/oraltraining can help reduce this language delay. Withoutsuch assistance from infancy, problems in the use ofEnglish typically persist throughout the deaf child'sschool years. With such assistance, the languagelearning task is easier but by no means easy.

This problem of English language acquisition af-fects content areas as well. While the academic lagmay be small during the primary grades, it tends tobe cumulative. A deaf adolescent may be a numberof grade levels behind hearing peers. However, the ex-tent to which hearing impairment affects 'school

chievement depends on many factorsthe degree.nd.type of hearing loss, the age at which it occurred,the presence of additional handicaps, the quality ofthe child's schooling, and the support available bothat home and at school.

Many deaf children now begin their education be-tween ages one td three years in a clinical programwith heavy parental involvement. Since the greatmajority of deaf childrenover 90 percentare bornto hearing parents, these programs provide instruc-tion for parents on implications of deafness within thefamily. By age four or five, most deaf children are en-rolled in school on a full-day basis. Approximatelyone-third of school-age deaf children attend privateor public residential schools. Some attend as day stu-dents and the rest usually travel home on weekends.Two-thirds attend day programs in schools for thedeaf or special day classes located in regular 8chools,or are mainstreamed into regular school programs.Some rr ainstreamed deaf children do most or all oftheir schoolwork in regular classes, occasionally withthe help of an interpreter, while others are main-streamed only for special activities or for one or twoclasses.

In addition to regular school subjects, most pro-grams do special work on communication arid lan-guage development. Class size is often limited toapproximately eight children to give more attentionto the children's language and communication needs.

At the secondary school level, students may worktoward a vocational objective or follow a more aca-demic course of s-tudy aimed at postsecondary edu-cation at a regular college, a special college programfor deaf students (such as Gallaudet University or theNational Technical Institute for the Deaf) or one of the100 or more community colleges and technicalschools that have special provisions for deafstudents.

Communication: Some Choices

Communication is an important component ofeveryone's life. The possible choices for communica-tion involve a variety of symbol systems. For exam-ple, you may communicate in English through speak-ing and writing. Despite your skills, you probably can-not communicate with someone whose only languageis Chinese, even though that person also speaks,reads, and writes quite fluently.

In the United States, deaf people also use a vari-ety of communication systems. They may chooseamong speaking, speechreading, writing, and manu-al communication. Manual communication is a gener-ic term referring to the use of manual signs andfingerspelling.

American Sign LanguageAmerican Sign Language (ASL) is a language

whose medium is visible rather than aural. Like anyother language, ASL has its own vocabulary, idioms,grammar, and syntaxdifferent frr:m English. Theelements of this language (the individual signs) con-sist of the handshape, position, movement, and orien-tation of the hands to the body and each other. ASLalso uses space, direction and speed of movements,and facial expression to help convey meaning.

FingerspellingWhen you spell with your fingers, you are in effect

"writing in the air." Instead of using an alphabet writ-ten on paper, you are using a manual alphabet, thatis, one with handshapes and positions correspond .ing to each of the letters of the written alphabet.

Conversations can be entirely fingerspelled. Amongdeaf people, however, fingerspelling is more typical-ly used to augment American Sign Language. Propernames and terms for which there are no signs areusually fingerspelled. In the educational setting, theuse of fingerspelling as the primary mode of commu-nication in combination with spoken English is kno..vnas the Rochester method.

Manual EnglishWhen the vocabulary of the American Sign Lan-

guage and fingerspelled words are presented :n

English word order, a 'pidgin' results. Pidgin Sign En-

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glish (PSE) is neither strictly English nor ASL, butcombines elements of both.

A number of systems have recently been devisedto assist deaf children in learning English. These sys-tems supplement some ASL signs with invented signsthat correspond to elements of English words (plurals.prefixes. and suf fixes. for example). There is usuallya set of rules for word (sign) formation within the par-ticular.system. These systems are generically knownas manually coded English or manual English sys-tems. The two most commonly used today are Sign-Ing Exact English and Signed English. While each ofthese systems was devised primarily for use by par-erlts and teachers in the educational setting, manyorthe invented and initialized signs from their lexi-cons are filtering into the vocabulary of the generaldeaf community.

Oral CommunicationThis term denotes the use of speech, residual hear-

ing, and speechreading as the primary means of com-munication for deaf people.

The application of research findings and techno-logical advances through the years has led to refine-ments In the rationale for and approach to teachingspeech to deaf children. Several findings are pertinenthere. Deaf children may actually have functionalresidual hearing. The speech signal is redundant.Since it carries excess information, it is not neces-sary to hear every sound to understand a message.For language learning to be successful with.deaf chil-dren (no matter what the educational approach), pro-grams of early intervention must take place during thecritical language-learning years of birth through 6.Hearing screening procedures that accurately detecthearing impairments in very young children make itpossible to fit hearing aids and other amplificationdevices and to introduce auditory and language train-ing programs as soon as the problem is detected.

Almost all auditory approaches today rely heavilyon the training of residual hearing. The traditional au-ditory/oral approach trains the hearing impaired childto acquire language through speechreading (lipread-ing), augmented by the use of residual hearing, andsometimes vibro-tactile cues. The auditory/verbal ap-proach (also called unisensory or acoupedic-method)teaches children to process language through ampli-fied residual hearing, so that language is learnedthrough auditory channels.

SpeechreadingRecognizing spoken words by watching the speak-

er's lips, face, and gestures is a daily challenge forall deaf people. Speechreading is the least consistent-ly visible of the communication choices availableto aeaf people; only about 30 percent of Englishsounds are visible on the lips, and 50 percent arenomophonous, that is, they look like something else.Try it for yourself. Look in a mirror and 'say' without

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voice the words 'kite,"height,"night.' You'll seealmost no changes on your lips to distinguish amongthose three words. Then say the following thraQwords'maybe,"baby,"pay me.' They look exactlyalike on the lips.

Some deaf people become skilled speechread.rs.especially if they can supplement what they see withsome hearing. Many do not develop great skill atspeechreading, but most deaf people do speechradto some extent. Because speechreaaing requirasguesswdrk, very few deaf people rely on speechrd-ing alone for exchanges cif important information.

Cued SpeechCued Speech is a system of communication in

which eight hand shapes in four possible positionssupplement the information visible on the lips. Thehand "cue" signals a visual difference betweensounds that look alike on the lipssuch as /pi. ib/./m/. These cues enable the hearing impaired person'to see the phonetic equivalent of what others hear.It is a speech-based method of communication aimedat taking the guesswork .out of speechreading.

Simultaneous Communicat'onThis term denotes the combined use of speech.

signs, and fingerspelling. Simultaneous communica-tion offers the benefit of seeing two forms of a mes-sage at the same time. The deaf individualspeechreads what is being spoken and simultaneous-ly reads the signs and fingerspelling of the speaker.

Total CommunicationTotal Communication is a philosophy which implies

acceptance and use of all possible methods of corn-munication to assist the deaf child in acquiring lan-guage and the deaf person in understanding.

Historically, proponents of particular systems haveoften been at odds with proponents of other systemsor modes. There is increasing consensus thatwhatever system or systems work best for the in-dividual should be used to allow the hearing impairedperson access to clear and understandable commu-nication.

y

Deaf Adults in Today's SocietyThe deaf adult population in the United States is

composed both of individuals deaf since early child-hood and individuals who lost their hearing later inlife. People who were deafened as adults, or after theage of 18, are sometimes called post-vocationallydeaf. Having already embarked on their careers, thesepeople may have serious problems both personallyand professionally adjusting to their hearing loss.People who were deafened prior to age 18 may haveproblems not only with English language skills, butalso, because of fewer opportunities for interactionwith hearing people in pre-work settings, they may be

less well prepared for interpersonal relationships they

encounter in the job market.

Educational Institutions

Schools for deaf students have trabitionally playednn important role in advancing the welfare of deafeople through education of degf students and pub-

lic information efforts about the capabilities and ac-complishments of deaf people. Two nationalinstitutions each have enrollments of over 1.000 deafstudents.

Gallaudet University800 Florida Ave. NEWashington, DC 20002-3625

Nalional Technical Institute for the DeafRochester Institute of Technology1 Lomb Memorial DriveRochester, NY 14623

For descriptions of the more than 100 postsecond-ary programs for deaf students at community collegesand technical schools around the country, order acopy of College and Career Programs for Deaf Stu-dents for $12.95 from:

College and Career ProgramsCenter for Assessment and Demographic Studies800 Florida Ave. NEWashington, DC 20002-3625

Special Devices for Deaf People

Technology and inventiveness have lead to a num-ber of devices which aid deaf people and increaseconvenience in their daily lives. Many of these devicesare commercially available under different tradenames.

Telecommunications Devices for Deaf People(TDDs) are mechanical/electronic devices which ena-ble people to type phone messages over the tele-phone network. The term TDD is generic and replacesthe earlier term TTY which refers specifically toteletypewriter machines. Telecaption adapters, some-times called decoders, are devices which are eitheradded to existing television sets or built into.certainnew sets to enable viewers to read dialogue and nar-rative as captions (subtitles) on the TV screen. Thesecaptions are not visible without .such adapters.

Signalling Devices which add a flashing andlorvibrating signal to the existing auditory signal arepopular with hearing impaired users. Among devicesusing flashing light signals are door "bells," tele-phone ring signallers, baby-cry signals (which alertthe parent that the baby is crying), and smoke alarmsystems. Alarm clocks may feature either the flash-ing light or vibrating signal.

Some Special Services

Numerous social service agencies extend their pro-gram services to deaf clients. In addition, variousagencies and organizationseither related to deaf-ness or to disability in generalprovide specific serv-ices to deaf people. Among these special services arethe following:

Captioned Films for the DeafA loan service of theatrical and educational films

captioned for deaf viewers.-Captioned Films for theDeaf is one of the projects funded by the Captioningand Adaptations Branch of the U.S. Department ofEducation to promote the education and welfare ofdeaf people through the use of media. This branchalso provides funds for closed-captioned televisionprograms, including the live-captioned ABC-TV news.

Registry of Interpreters for the Deaf, Inc.A professional organization, RID maintains a na-

tional listing of individuals skilled in the use of Ameri-can Sign Language and other sign systems andprovides information on interpreting and evaluationand certification of interpreters for deaf people..

State Departments of Vocational RehabilitationEach state has specific provisions for the type and

extent of vocational rehabilitation service, but all pro-vide vocational evaluation, financial assistance foreducation and training, and job placement help.

Telecommunications for the Deaf, Inc.TDI publishes an international telephone directory

of individuals and organizations who own and main-tain TDDs (telecommunications devices for deaf peo-ple) for personal or businuss use.

Contributors to the original fact sheet:

Roger Beach, Ph.D., Asst. Professor, Department ofCounseling, Gallaudet University.

Bernadette Kappen, Ph.D.. Asst. Principal, OverbrookSchool for the Blind, Philadelphia, PA.

William McFarland, Ph.D., Director of Audiology, Oto-logic Medical Group, Los Angeles, CA.

Philip Schmitt, Ph.D., Professor, Department of Edu-cation, Gallaudet University.

Ben M. Schowe; Jr., Ph.D., Learning ResourcesCenter, MSSD, Gallaudet University.

t )

Leticia Taubena-Bogatz, M.A., Teacher, KDES. Gal-

laudet University.

O.

Revised by Loraine Diiletro, Director, National Infor-

mation Center on Deafness, Gallaudet University

Suggested Readings

Javis, H. and Silverman, R.S., (1978). Hearing andDeafness (4th ed.) New York: Holt, Rinehart andWinston.

Freeman. R., Carbin, C.F. and Boese, R., (1981). Can'tYour Child Hear? A Guide for Those Who CareAbout Deaf Children. Baltimore: University Park

7". Press.

Ganilon, J., (1981). Deaf Heritage. Silver Spring, MD;. National Association of the Deaf.

Katz, L., Mathis, S.; and Merrill, E.C. Jr., (1978). TheDeaf Child in the Public Schools: A Handbookfor Parents of Deaf Children (2nd ed.). Danville,IL: Inte'rstate Printers and Publishers.

Mindel, E.; and Vernon, M., (1971). They Grow in Si-lence: The Deaf Child and his Family. SilverSpring, MD: National Association of the Deaf.

Moores, D , (1987). Educating the Deaf: Psychology,Principles, and Practices (3rd ed.). Boston:Houghton Mifflin Co.

Jgden,P.; and Lipsett, S.,(1982). The Silent Garden:Understanding the Hearing Impaired Child. NewYork City: St. Martin's Press.

Schlesinger. H.; and Meadow, K. (1974). Sound andSign: Childhood Deafness and Mental Health.Berkeley: University of California.

Spradley, T.S.; and Spradley, J.P. (1978). Deaf Like Me.Washington, DC: Gallaudet University Press.

Directory of Services

The April issue of the American Annals of the Deafis a directory of the various programs and servicesfor deaf persons in the United States. Copies of thisreference may be purchased from:

American Annals of the DeafGallaudet UniversityKDES, PAS 6800 Florida Ave. NEWashington, DC 20002-3625

Additional Information

If you have specific questions that were not an-swered by this fact sheet, please contact either theNational Information Center on Deafness, GallaudetUniversity, Washington, DC 20002, or the NationalAssociation of the Deaf, 814 Thayer Avenue, SilverSpring, MD 20910.

The National Information Center on Deafness(NICD) is a centralized source of information on allaspects of deafness and hearing loss, including edu-cation of deaf children, hearing loss and aging,careers in the field of deafness, assistive devices andcommunication with hearing impaired people.

NEW PHONE NUMBER:(202) 416-0330 (VaCE/TT)

Gallaudet University is an equal opportunity employer/educational institution and does not dis-criminate on the basis of race, color, sex, national origin, religion, age, disability, or veteran sta-

tus in employment or admission to its programs and activities.

MISCONCEPTIONS ABOUT PERSONS WITH HEARING IMPAIRMENTS

MYTH Deafness is not as severe a disability as blind-

ness. .

. MYTH - It is unhealthy for people who are deaf to social-

ize almost exclusively with others who are deaf.

FACT - Although it is impossible to predict the exact con-sequences of 6 disability on a person's functioning, in gener-al, deafness poses more difficulties in-adjustment than doesblindness. This is largely due to the effects hearing loss canhave on the ability to understand and speak oral language.

FACT =.- Many authorities now recognize that thephenomenon of a Deaf culture is natural and should beencouraged. In fact, some are worried that too much main-streaming will diminish the influence of the Deaf culture,

MYTH >. In learning to understand what is being said to FACT - Lipreading refers only to visual cues arising from

them, people with hearing impairment concentrate on reading movement of the lips. Some people who are hearing impaired

lips,not only read lips, but also take advantage of a number ofother visual cues, such as facial expressions and movements of

the jaw and tongue. They are engaging in what is referred to

as speechreading.

MYTH >>- Speechreading is relatively easy to learn and is

used by the majority of people with hearing impairment.

FACT Speechreading is extremely difficult to learn, and

very few people who are hearing impaired actually become

proficient speechreaders.

MYTH American 'Sign Language (ASO is a loosely struc- FACT ASL is a true language in ih own right with its own

tured group of gestures. set of grammatical rules.

MYTH ASL can convey only concrete ideas. FACT ASL can convey any level of abstraction.

MYTH - People within the Deaf community are in favor of

mainstreaming students who are deaf into regular classes.

MYTH Families in which both the child and the parents

bre deaf are at a distinct disadvantage compared to families

in which the parents are hearing.

FACT - Some within the Deaf communiiy have voiced the

opinion that regular classes are not appropriate for many stu-

dents who are deaf. They point to a need for a critical mass of

students who are deaf in order to have effective educational

procrams.

FACT Research has demonstrated that children who are

deaf who have parents who ore also deaf fare better in a num-

ber of academic and social areas. Authorities point to the par-

ents' ability to communicate with their children in ASL as a

major reason for this advantage.

7 a

Discrimination is a common problem for minoritygroups. Deaf people as member.s of a minority group,experience their share of discrimination. Deaf peopleas a group are underemployed. Together with mem-)ers of other minority and disabled groups, deaf peo-ple are working to change attitudes which have giventhem jobs .but inadequate advancement opportu-nities.

In the United States, deaf people work in almostevery occupational field. Some have become doctors,dentists, lawyers, and members of the clergy. A num-ber of deaf people enter careers within the field ofdeafness.Thirteen hundred teachers of deaf students intheVnited States are themselves hearing impaired in-dividuals. In addition, there are deaf administrators,psychologists, social workers, counselors, and voca-tional rehabilitation specialists. Deaf people drivecars and hold noncommercial pilot's licenses andpursue the same leisure time interests as everyoneelse.

Many deaf young people have attended school withdeaf classmates. This educational pattern, coupled

with ease of communication and compatibility =n-couraged by shared experiences as deaf individuals,leads to socializing with other deaf individuals inmaturity.. Many deaf people (80 percent) tend to marryother deaf people; most of their children (approxi-mately 90 percent) are hearing.

The Deaf CommunityBecause the problem in dealing with the hearing

world is one of communication, deaf people tend tosocialize together more than do people with other dis-abilities. However, members of the deaf communityhave contacts with other people, too. Some are ac-tive members of organizations of hearing people.Some deaf people move freely between hearing anddeaf groups, while other deaf people may have almostno social contact with hearing people. A few deaf peo-ple may choose to socialize only with hearing people.

While it is possible to find deaf individuals in ev-ery section of the United States, there are major con-centrations of deaf people in the larger metropolitanareas of the East and West coasts..

Organizations of and for Deaf PeopleClubs and organizations of deaf people range in

purpose from those with social motives (watchingcaptioned films, for example) to those with charita-ble aims. Organizations offer deaf people the oppor-tunity to pursue a hobby (athletics, drama) or civiccommitment (political action) on the local, regionalor national level. Local or state associations of deafpeople may be affiliated with the National Associa-tion of the Deaf. The Oral Deaf Adults Section of theAlexander Graham Bell Association for the Deaf haslocal chapters that provide social opportunities fordeaf people who favor oral communication. The Na-tional Fraternal Society of the Deaf provides insur-ance and supports social and charitable functions.It has 120 divisions throughout the United States andCanada.

A few of the 'more than 20 national organizationsof and for deaf people in the United States are brieflydescribed in the following list. Many of these organi-zations publish newsletters, magazines, or journals.Add to these the publications developed by clubs andschools for the deaf (for students and alumni)land itis possible to identify 400 publications aimed at areadership within the deaf community.Alexander Graham Bell Association for the Deaf3417 Volta Place, NWWashington, DC 20007(202) 227-5220 (V/TDD)A private, nonprofit organization serving as an infor-mation resource, advocate, publisher, and conferenceorganizer, the Alexander Graham Bell Association iscommitted to finding more effective ways of teach-ing deaf and hard of hearing people to communicateorally. Sections within the organization focus on the

needs of deaf adults (Oral Deaf Adults Section) andparents (International Parent Organization).

American Deafness and Rehabilitation AssociationP.O. Box 55369Little Rock, AR 77225(501) 663-4617 (V/TDD)An interdisciplinary organization for professional andlay persons concerned with services to adult deafpeople, ADARA sponsors workshops for state re-habilitation coordinators.

American Society for Deaf Children814 Thayer AvenueSilver Spring, MD 20910(301) 585-5400 (V/TDD).Composed of parents and concerned professionals,ASDC provides information, organizes conventions,and of fers training to parents and families with chil-dren who are hearing impaired.

National Association of the Deaf814 Thayer AvenueSilver Spring, MD 20910(301) 587-1788 (V/TDD)With 50 state association affiliates and an aggregatemembership exceeding 20,000, the NAD is a con-sumer advocate organization concerned about and in-volved with every area of interest affecting life oppor-tunities for deaf people. It serves as a clearinghouseof information on deafness, offers for sale over 20

books on various aspects of deafness, and workscooperatively with other organizations representingboth deafness and other disabilities on matters ofcommon concern.

Deaf pitcher doesn't letdisability stand in way of success

Hitters and pitchers look for them. Catchers and coachesgive them. Everyone tries to steal them. Signs are as much apart of the game of baseball as the bat and ball.

And in a society that does not always accommodate thehearing impaired, baseballwith its endless parade of signsand gesturesis an oasis where the hearing and deaf alikeattend on equal footing.

Aaron Farley is deaf. He also happens to have beenraised on baseball. The name given at birthAaron (as inHank) Matthew (as in Eddie, only without the 's') Farley (as inAaron's father Bob, big Braves' fan)left little doubt thatbaseball would constitute a huge part of his life. .

Make no mistake about it, when Farley takes the mound inthis weekend's 17-18 year old Babe Ruth state tournament inPurcellville, the 18-year-old C.B. Baker all-star will be justanother baseball player.

"Baseball is one of those beautiful sports that rely so muchon symbols," said Bob Farley, who also serves as all-starcoach. 'When the game starts we all speak a different lan-guage, anrvay."

If baseball is unique in that sense, then it owes a gooddeal to deaf individuals such as William Hoy. An act so cen-tral to the national pastimethe umpire's animated strikecallwas prompted by Hoy, a turn-of-the-century NationalLeague outfielder, who required hand signals to know if thepitch was a ball or a strike.

The symbolic code that has developed in the years since isa language Farley probably understands better than most.

Born profoundly deafthe most severe degree of hearingimpairmentFarley is capable of hearing high-decibelsounds like thunder, but little else. So he compensates witheyes. Farley confidently states that no one on the playing fieldsees as much as he does. His father doesn't remember himever missing a sign.

His own safety, in fact, requires that Farley rigidly adhereto the proverbial commandkeep your eye on the ball.

"He has to focus and concentrate on the entire game,"said the elder Farley. "I don't know if it makes him better, butit sure makes him tired."

Moreover, it makes him intensely competitive. As one notdistracted on the field, he expects nothing less from his team-mates. "I don't want to make o mistake, I don't want myteammates to make a mistcke," Aaron said. "I want to win."

Win he has. During the C.B. Baker regular season, Farleyposted a perfect 4-0 record for champion Puritan, the bestmark in the league. He was equally successful at the platewith a .360 batting average.

PROGRESS PHOTO bY MATT GENTRY

Aaron Farley of the C. B. Baker League All-Star team hasnot let deafness keep him from enjoying success as apitcher. The 18-year-old is 6-0 this summer (1992) in regu-lar season and tournament play.

In last weekend's District 5 tournament, Farley added twomore winsincluding Sunday's 12-6 championship victoryto help put the Charlottesville squad in today's first-roundgame against the District 7 champions.

On the subject of stats, try this one: 3.60. Not ERA, butGPA. In June, Farley graduated with honors fromCharlottesville High School and will attend Rochester (N.Y.)Institute of Technology this fall with plans to major incomputer science and math.

A message blackboard in Farley's bedroom frequentlycarries this admonition from his father: "Most limitations areself-imposed." The son has token the saying to heart.Consequently, Aaron Farley has not allowed his disability toget in the way of on- or off-field achievement.

He rejects the notion, however, that he is any sort of rolemodel, but the message is clear: Being deaf is no excuse notto participate, or succeed.

SOURCE: The Daily Prog-ess, July, 17, 1992, pp. C1 , C3.Copyright 0 1992. Reprinted with permission.

77

X Speech and Language Disorders

- General Information about Speeca and LanguageDisorders (NICHCY Fact Sheet)

- Misconceptions about Persons with CommunicationDisorders

The Manual Alphabet

- Practice Learning Signs

. ..- Z.; ; s.3

NICHCYNational Infor2nation Center for Children and Youth with Disabilities

P.O. Box 1492, Washington, D.C. 20013-14921-800495-0285 (Toll Free) (202) 416-0300 (Local, Voice/77)

SpecialNet User Name: NICHCY " SCAN User Name: NICHCY

General Information About

SPEECH AND LANGUAGE DISORDERS

Definition

'Speech and language disorders refer to problems incommunication and related areas such as oral motor func-tion. These delays and disorders range from simple soundsubstitutions to the inability to understand or use languageor use the oral-motor mechanism for functional speech andfeeding. Some causes of speech and language disorders

include hearing loss, neurological disorders, brain injury,

mental retardation, drug abuse, physical impairments such

as cleft lip or palate, and vocalabuse or misuse. Frequently,however, the cause is unknown.

Incidence

One quarter of the students served in the public schools'special education programs (almost 1 million children inthe 1988-89 school year) were categorized as speech orlanguage impaired. This estimate does not include children

who have speech/language problems secondary to other

conditions such as deafness. Language disorders may be

related to other disabilities such as mental retardation,

autism, or cerebral palsy. It is estimated that communica-tion disorders (including speech, language, and hearing

disorders) affect one of every 10 people in the United

S tates.

Characteristics

A child's communication is considered delayed when

the child is noticeably behind his or her peers in theacquisition of speech and/or language skills. Sometimes a

child will have greater receptive (understanding) thanexpressive (speaking) language skills, but this is not always

the case.

they may be difficulties with the pitch, volume, or qualityof the voice. There may be a combination of several I

problems. People with speech disorders have trouble usina I

some speech sounds, which can also be a symptom of adelay. They may say "see" when they mean "ski" or theymay have trouble using other sounds like "I" or "r".Listeners may have trouble understanding what someonewith a speech disorder is trying to say. People with voicedisorders may have trouble with the way their voicessound.

Speech disorders refer to difficulties producing speech

sounds or problems with voice quality. They might becharacterized by an interruption in the flow or rhythm of

speech, such as stuttering, which is called dysfluency.Speech disorders may be problems with the way sounds are

formed, called articulation or phonological disorders, or

A language disorder is an impairment in the ability tounderstand and/or use words in context, both verbally andnonverbally. Some characteristics of language disordersinclude improper use of words and their meanings, inability

to express ideas, inappropriate grammatical patterns, re-duced vocabulary, and inability to follow directions. One

or a combination of these characteristics may occur inchildren who are affected by language learning disabilities

or developmental language delay. Children may hear orsee a word but not be able to understand its meaning. Theymay have trouble getting others to understand what they are

trying to communicate.

Educational Implications

tt

Because all communication disorders carry the poten-

tial to isolate individuals from their social and educational

surroundings, it is essential to find appropriate timelyintervention. While many speech and language patterns

can be called "baby talk" and are part of a young child's

normal development, theycan become problems if they are

not outgrown as expedted. In this way an initial delay in

speech and language or an initial speech pattern can be-

come a disorder which can cause difficulties in learning.Because of the way the brain develops, it is easier to learn

language and cprnrnunication skills before the age of 5.

When children have muscular disorders, hearing problems

or developmental delays, their acquisition of speech, lan-

guage, and related skills is often affected.

Speech-language pathologists assist children who havecommunication disorders in various. ways. They provide

individual therapy for the child; consult with the child's:cher about the most effective ways to facilitate the

uild' s communication in the Class seti-ing; and work closely

with the family to develop goals and techniques for effec-

tive therapy in class and at home. Technology can help

children whose physical conditions make communicationdifficult. The use of electronic communication systems

allow nonspeaking people and people with severe physicaldisabilities to engage in the give and take ofshared thought.

Vocabulary and concept growth continues during the

years children are in school. Reading and writing are taught

and, as students get older, the understanding and use of

language becomes more complex. Communication skills

are at the heart of the education experience. Speech and/orlanguage therapy may continue throughout a student'sschool year-either in the form of direct therapy or on a

consultant basis. The speech-language pathologist may

assist vocational teachers and counselors in establishingcommunication goals related to the work experiences ofstudents 'and suggest strategies that are effective for the

important transition from school toemployment and adult

life.

Communication has many components. All serve to

increase the way people learn about the world around them,

utilize knowledge and skills, and interact with colleagues,

family, and friends.

Resources

Bernthal, I.E. & Bankson, N.W. (1993). Articulation andphonological disorders (3rd ed). Englewood Cliffs,

NJ: Prentice Hall. (Telephone: 1-800-947-7700.)

Beukelman, D.R., & Mirenda, P. (1992). Augmentativeand alternative communication: Management of se-

vere communication disorders in children and adults.Baltimore, MD: Paul H. Brookes. (Telephone: 1-800-

638-3775.)

Shames, G.H., &Wiig, E.H. (1990). Human communica-

tion disorders: An introduction (3rd ed.). Columbus,OH: Men ill. (Contact Macmillan Publishing at 1-800-

257-5755.)

Organizations

Alliance for Technology Access1128 Solano AvenueAlbany, CA 94706(510) 528-0747

Cleft Palate Foundation1218 Grandview Ave.University of PittsburghPittsburgh, PA 15211412-481-1376; 800-242-5338; 800-243-5338 (in PA)

American Speech-Language-Hearing Association(ASHA)10801 Rockville PikeRockville, MD 20852301-897-5700 (V/1-1); 800-638-8255

Learning Disabilities Association of America (LDA)4156 Library RoadPittsburgh, PA 15234412-341-1515; 412-341-8077

Division for Children with Communication Disordersc/o Council for Exceptional Children (CEC)

1920 Association DriveReston, VA 22091-1589703-62073660

National Easter Seal Society70 East Lake StreetChicago, IL 60601312-726-6200; 312-726-4258 (11)800-221-6827 (Calls outside IL)(For information about services for children and youth.)

Scottish Rite FoundationSouthern Jurisdiction, U.S.A., Lnc.1733 Sixteenth Street, N.W.Washington, DC 20009-3199202-232-3579

Trace Research and Development CenterUniversity of Wisconsin - MadisonS-151 Waisman CenterMadison, WI 53705-2280608-262-6966; 608-263-5408 (TI)

'I Thli fact sheet Ls 'made iossible through CoO:perailie A.gt:iement

011030A36003 beec the Acaderdy f or Erhicational DereIoPment and

!. the °Mei of SpecialEducation Programs. TEe content'sOf this pnblica-

--F:Alon do not ittceitsit:11Y reflect the iielss orpolkies ot the Deliartment of

,1Educationi.por ddeif mentioit.c<tradz names;:commercial pitidncts or..o.rgiMizations hiPly endorseicOent by the US.

,.'I!

,Thfs Informatlim ii In the public domain nale: Othvise indicate&

Readers are encouraged to'COpy and sh..ie it; but please 'credit the

NaUo nal Information Center tor Children and Youthleith Disabilities

For more information contact NICHCY.

UPDATE 17293

(3 0 BEST COPY AVAILABLE

MISCONCEPTIONS ABOUT PERSONS WITH COMUNICATION DISORDERS

MYTH >- Children with language disorders always have.speech difficulties as well.

is

MYTH s- Individuals with communication disorders alwayshave emotional or behavioral disorders or mental retardation.

MYTH - How children learn language is now well under-stood.

MYTH >- Stuttering is primarily a disorder of people withextremely high 1Qs. Children who stutter become stuttering

adults.

MYTH > Disorders of phonology (or articulation) are neververy serious and are always easy to correct.

MYTH >. A child with a cleft palate always has defectivespeech.

MYTH - There is no relationship between intelligence anddisorders of communication.

MYTH );.- There is not much overlap between languagedisorders and learning disabilities.

FACT > It is possible for a child to have good speech andyet not make any sense when he or she talks; however, mostchildren with language disorders have speech disorders aswell.

FACT > Some children with communication disorders arenormal in cognitive, social, and emotional development.

FACT Although recent research has revealed quite a lotabout the sequence of language acquisition and has led totheories of language development, exactly hew children learnlanguage is still unknown.

FACT - Stuttering can affect individuals at any level of

intellectual ability. Some children who stutter continue stutter-ing as adults; most, however, stop stuttering before or during

adolescence with help from a speech-language pathologist.

Stuttering is primarily a childhood disorder, found much more

often in boys than in girls.

FACT - Disorders of phonology can make speech unintelligi-

ble; it is sometimes very difficult to correct phonological orarticulation problems, especially if the individual has cerebralpalsy, mental retardation, or emotional or behavioral disorders.

FACT - The child born with a cleft palate may or may nothave a speech disorder, depending on the nature of the cleft,

the medical treatment given, and other factors such as psycho-

logical characteristics and speech training.

FACT Communication disorders tend to occur more fre-

quently among individuals of lower intellectual ability, although

these disorders may occur in individuals who are extremely

intelligent.

FACT Problems with verbal skillslistening, reading,writing, speakingore often a central feature of a learning

disability. The definitions of language disorders and several

other disabilities are overlapping.

8t

A

The Manual Alphabet

0

82

Practice Learning SignsLearn and practice the signs and sentences on each page beforeproceeding to tiv next. Descriptions are supplied at the bottom ofeach page.

Hi,- how are you

Eine , thanks . What is the new

girl's boy's name?

S

Xi. Autism

o General Information about Autism (NICHCY Fact Sheet)

O Common Misconceptions about Persons with Autism

Autism Fact Sheet

o Autism, Mark Reber

o Facts about Autism

O Self Injury, Answers to Questions for Parents, Teachersand Caregivers

o Early Childhood Autism: Changing Perspectives

84

NICHCYNational Information Center for Children and Youth with Disabilities

' P.O. Box 1492, Washington, D.C. 20013-102(703) 893-6061 (Local) (1.800) 999-5599 (Toll Free) (703) 893-8614 (rr)

SpecialNxt User Name: NICHGT SCAN User Name: NICFICY

NEW ?HONE NUMBER:(202) 416-0300 (VOICE/TT)

General Information About NEW PHONE NUMBER:(202) 416-0300 (VOICE/ )

AUTISM

4.. Definition -0.

Autism is a developmental disorder whichdsually becomes evident before the age of threeyears. It is a neurological or brain disorder inwhich behavior, communication, and social in-teractions are the primary disabilities.

4. Incidence 4.

The rate of incidence, or how often autismoccurs in cHildren, ranges from five to fifteenout of 10,000 births. The different estimatesare based on slightly different definitions ofautism.

It is three times more common in boys thangirls and is rarely found in more than one childin a family.

Autism can be caused by a number of fac-tors, but the cause in the vast majority is notknown. It is known that autism is caused bybiological, not psychological, factors.

4. Characteristics 4.

Some babies show signs of autism frominfancy. They may not like to cuddle and mayshow little interest in their families.

Typical characteristics of autism are oftendescribed as:

difficulty relating to people, objects andevents;

repetitive movements such as rockingand spinning, head banging and handtwisting;insistence that the environment androutine remk,"n unchanged;avoidance of eye contact;verbal and nonverbal communicationskills are severely impaired;use of toys and objects is an u.nconven-tional manner, little imaginative play;severe impairment of social interactiondevelopment; andlimited intellectual ability.

It should be noted that any one of thesecharac-..eristics may occur in children with otherdisabilities. In these cases the term "autistic-like behavior is used.

4. Educational Implications 4.

Early diagnosis and educational evaluationof autism are very important, although helpgiven at any age can make a significant dif-ference.

Public Law 101-476, the Individuals withDisabilities Education Act (IDEA), formerlythe Education of the Handicapped Act, nowincludes autism as a separate disability cat-egory. Children with autism will be eligible forspecial education and related services underthis new category.

Until recently, children with autism havebeen eligible for special education and related

85

services u.nder the category of "other healthimpaired." The regulationif (CFR 300.5) to theEducation of the Handicapped Act state, "Otherealth impaired means (i) having an autisticcondition which is manifested by severe cotn-tnu.nication and other developmental andeducational problems...". These regulationswill be changed to reflect autism as a categoryincluded under the IDEA.

Emphasis in education needs to be on help-,' ing the child tc learn ways to communicate and

o.n structuring the environment so that it isconsistent and predictable. Effective teachingincludes attention to behavior plans, positive

1 behavior management, and clear expectationsand rule's.

Many of these methods can be developed inconjunction with parents and followed throughat home. Continuity and consistency betweenhome and school environments can greatly aidin the security and progress of persons withautism.

While autisir. is a lifetime condition, withspecial training, supervision, and support,many adults with autism can live and work inthe community.

-4> Resources +

Autism Research International NewsletterInstitute for Child Behavior Research4182 Adams AvenueSan Diego, CA 92116

Journal of Autism and DevelopmentalDisordersPlenum Publishing Corporation233 Spring StreetNew York, NY 10013

Park, Clara, (1982) The Siege. Boston; LittleBrown and Company.

Powers, Michael D. (Ed) (1989). Children with (.Autism, A Parent's Guide. Rockville, M1);Woodbine House.

Wing, L., M.D., (1980). Autistic Children: AGuide for Parents and Professionals. Se-caucus, NJ: The Citadel Press.

4- Organizations <>

Autism HotlineAutism Services Center101 Richmond StreetHuntington, WV 25702(304) 523-8269

Autiam Society of America8601 Georgia AvenueSuite 503Silver Spring, MD 20910(301) 565-0433

Institute for Child Behavior Research4182 Adams AvenueSan Diego, CA 92116(618) 281-7165

This foletsteree wiee derdoped loterstase Reseertis Mee-dotes... Us.. wows' Coewerstiee AcreessentitlialWASSIPOS wide Coe Clek ef Special Voluessitot Pro-grams. 'Tbseeoteadoeltbispoblicatiosdo am necesesrilyvidisesteho sieweerpslidesehbelispertassestsadedestioo.

eisesmowdos Weds souses, eseasserefal peedoxes execipusiostiessboply esioreowsies tryibs tr.& deversioeco.

Th ..d-*M fa eiss peddledeSeafo unless otherwiseiodieeted. Itosions sa. eacearsged es copy sod shore it,bus pima. end% tho National Illteirglatti011 C4 trtar farChadrso asd/Teotte wide CNICIICY) .

MATE 5'92

For more int, rmation contact NICHCY.

BEST COPY AVAILABLE

;'

:Common Misconceptions About Autism

Misconceptions

1. Autism is an emotional disorder

. 2. It is difficult to distinguish betweenautism and childhood schizophrenia

3. Aiitism occurs more commonlyamong higher SES and educationallevels

4. Autism exists only in childhood

5. With the proper treatment, mostautistic children eventually "outgrow"autism

6. Autistic children do not show socialattachments, even to parents

7. Autistic children do not showaffectionate behavior

8. Most autistic children have specialtalents or abilities

9. Most autistic children are notmentally retarded

10. Autistic children are more intelligentthan scores from appropriate testsindicate

W. Stone, Ph.D.6194

Facts

Autism occurs as a result ofdiverse organic etiologies

Autism and schizophrenia differ onseveral important features, includingage of onset, cognitive level, course, andfamily history

Autism appears to be evenly distributedacross all SES and educational levels

Autism is a lifelong disorder'

Characteristics and behaviors associatedwith autism often improve as a result ofintervention

Autistic children can and do form socialattachments, though their relationshipstypically lack a sense of reciprocity

Autistic children can and do showaffectionate behaviors such as huggingand kissing

Many autistic children have unevenlydeveloped cognitive skills, but very fewhave savant capabilities

- 80% of autistic children functionintellectually within the range of mentalretardation

I.Q. scores are accurate, stable, andpredictive when appropriate instrumentsand assessment strategies are used

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ctio

nw

ithau

tistic

beh

a,,io

r.

How

sev

ere

can

autis

m b

e?

In m

ilder

form

s, a

utis

m m

ost r

esem

bles

ale

arni

na d

isab

i;:ry

suc

h as

chi

ldho

od a

phas

ia.

Usu

ally

, how

ever

, peo

ple

with

aut

ism

are

sub

-st

antia

lly h

andi

capp

ed.

With

app

roxi

mat

ely

3% o

f tho

se a

fflic

ted,

sev

ere

autis

m m

ay c

ause

ext

rem

e fo

rms

of s

elf-

cjur

ious

, rep

etiti

ve, h

ighl

y un

usua

l, an

d ag

-gr

essi

ve b

ehav

ior.

The

beh

avio

r m

ay p

ersi

stan

d be

eer

y di

' fic

l;lt

to c

hang

e, p

osin

ctr

emen

dous

cha

lleng

e to

thos

e w

ho m

ust

mon

age,

trea

t, an

d te

ach

indi

vidu

als

wifh

autis

m..

Peo

ple

with

aat

ism

live

nor

mal

life

spa

ns.

Sin

ce c

erta

in s

ympt

oms

may

cha

nge

or e

ven

disa

ppea

r ov

er ti

me,

per

sons

with

aut

ism

shou

ld b

e re

eval

uate

d ne

i iod

ical

ly a

nd th

eir

trea

tm:.n

t adj

uste

d to

mee

t the

ir ch

angi

ng

Wha

t are

the

mos

t effe

ctiv

e tr

eatm

ents

?

Var

ious

met

hods

of t

reat

men

t hav

e be

en tr

ied

but n

o si

ngle

trea

tmen

t is

effe

ctiv

e in

all

case

s.H

owev

er, a

ppro

prii.

prog

ram

min

g, b

ased

on

indi

vidu

al fu

nctio

ning

leve

l and

nee

d, is

of

.....

.trn

Edu

caljo

n.,,H

ighl

y st

ru-'.

4r--

1. s

kill-

orie

nted

trai

ning

, tai

ioie

d to

the

i,il,

has

pro

ven

rnos

Lhel

pful

. Soc

ial a

nd la

ngua

ge s

kills

sho

uld

be d

evel

Ope

d as

muc

h as

pos

sibl

e, T

houg

htm

ust a

lso

be g

iven

to a

void

ing

seco

ndar

yha

ndic

aps,

suc

h as

loss

of m

uscl

e to

ne w

hen

inac

tivity

is a

pro

blem

.

Cou

nsel

ing.

Sup

port

ive

coun

selin

g m

ay b

ehe

lpfu

l for

fam

ilies

with

mem

bers

who

hav

eau

tism

, jus

t as

itis

for

othe

r fa

mili

es w

ithm

embe

rs w

ho h

ave

lifel

ong

disa

bilit

ies.

Phy

si-

cian

s ca

n us

ually

adv

ise

pare

nts

as to

cou

nsel

-in

g se

rvic

es a

vaila

ble.

Car

e m

ust b

e ta

ken

toav

oid

unen

light

ened

cou

nsel

ors

who

err

on-

eous

ly b

elie

ve th

at p

aren

tal a

ttitu

deS

and

beha

vior

cau

se a

utis

m.

Med

icat

ion/

Die

t. In

the

type

s of

aut

ism

whe

re m

etab

olic

abn

orm

aliti

es c

an b

e id

ent-

ified

, con

trol

led

diet

and

/or

med

icat

;on

can

bebe

nefic

ial.

Exa

mpl

es a

re th

ose

who

se a

utis

m is

caus

ed b

y an

exc

ess

of u

ric a

cid

in th

e bl

ood,

or w

hose

aut

ism

is a

ggra

vate

d by

nutr

ition

alim

bala

nces

. Als

o, p

rope

rly m

onito

red

med

ica-

tion

t" d

ecre

ase

spec

ific

sym

ptom

s ca

n h,

lpso

me

autis

tic in

divi

dual

s liv

e m

ore

satis

fact

ory

lives

.

Wha

t res

eart

h is

bei

ng d

one?

The

Nat

iona

l Ins

titut

e of

Neu

rolo

gica

l and

Com

mun

icat

ive

Dis

orde

rs a

nd S

trok

e (N

UN

CD

S)

initi

ated

a r

esea

rch

sect

ion

on a

utis

m in

198

3,an

d m

ay b

e co

ntac

ted

dire

ctly

ccn

cern

ino

rese

arch

initi

ativ

es in

dia

gnos

tic, t

rea!

men

t,ed

ucat

iona

l, ha

bilit

ativ

e, a

nd e

valu

etiv

e ap

-pr

oach

es r

elev

ant t

o au

tism

.N

INC

DS

is L

onun

uing

to s

tudy

the

14 a

ut!s

ticch

ildre

n id

entif

ied

in it

s C

olla

bora

tive

Per

inat

alP

roje

ct (

a 15

-yea

r st

udy

of 5

5,00

0 pr

egna

ncie

sar

id th

e ou

tcom

es).

Thi

s pr

ojec

t cen

ters

on

effo

rts

to id

entif

y pr

edic

tive

sign

s of

aut

ism

.O

ngoi

ng s

tudy

is n

eces

sary

to d

eter

min

eho

w a

utis

m o

ccur

s an

d to

iden

tify

way

s to

prev

ent o

r al

levi

ate

its e

ffect

s. B

asic

res

earc

hin

a b

road

spe

ctru

m o

f sci

entif

ic d

isci

plin

esis

need

ed to

she

d fu

rthe

r lig

ht o

n th

e ch

alle

nges

pm e

sent

ed b

y A

utis

m.

9

C7,

is,1

/4:1

1LIT

IES

The

h,..

pera

tive

child

, ado

lesc

ent,

am'a

dult:

Atte

ntio

n de

ficit

diso

rder

.a

Re:

Int:e

rr, F

.W. (

1985

). P

hanr

isco

iogi

caltr

eatm

ent o

f atte

nti.m

1

.es,

t,uct

type

(A

DD

, RT

. "rn

iB.i.

m_a

l bra

in d

ysfu

nctio

n."

''',,,,

xrac

tivity

"), i

rrt

ticvd

ahl.

T.E

., G

ross

, M.,

et a

l. (1

990)

. Cer

sbra

lgl

ucas

c..m

zaba

llina

in a

dults

of c

i.ihu

.don

set N

ew E

ngla

n.4

A.,

1-'

;,'r1

, JL

.,M

urrh

y, D

L.,

et a

l. (1

9'65

). T

reat

men

t of h

yper

activ

ech

ildre

n

ciio

rs. I

. Clin

ical

effi

cacy

. Arc

hive

s of

Gen

eral

Psy

chia

try,

42.

:

Cha

pter

22

Aut

ism

with

Mar

k R

eber

Upo

n co

mpl

etio

n of

this

cha

pter

, the

read

er w

ill:

be a

ble

to d

efin

e au

tism

unde

rsta

nd th

e ch

arac

teris

tics

al a

ilsdi

sord

er

know

how

to d

istin

guis

h au

.. n

from

oth

er d

evel

opm

enta

l dis

abili

lies

be a

cqua

inte

d w

ith th

e va

rious

inte

rven

tion

appr

oach

es to

this

dis

orde

r

Like

men

tal r

etar

datio

n,la

tRis

m is

abr

ain-

basc

d de

velo

pmen

tal d

isab

ility

with

mul

ti-

ple

caus

es. A

utis

m d

iffas

from

men

tal r

etar

datio

n in

that

its

char

acte

ristic

feat

ure

is

'not

a d

elay

in d

evel

opm

ent,

but a

serie

s of

str

ikin

g de

viat

ions

from

norm

al d

evel

op-

men

tal p

atte

rns

that

bec

ome

appa

rent

by 3

yea

rs o

f age

. Aut

ism

invo

lves

dist

urba

nces

in c

ogni

tion,

inte

rper

sona

lcom

mun

icat

ion,

soc

ial i

nter

actio

ns, a

ndbe

havi

or (

in p

ar-

ticul

ar, t

he p

rese

nce

of o

bses

sion

al,

ritua

listic

, ste

reot

yped

, and

rig

idbe

havi

ors)

(Am

eric

an P

sych

iaer

ic A

ssoc

iatio

n,19

37; C

ohen

, Don

nella

n, &

Pau

l,19

87; G

ill-

berg

, 199

0). D

evia

nt d

evel

opm

ent

in a

ll of

thes

e ar

eas

is n

eces

sary

for

adi

agno

sis

of

autis

m, t

hus

givi

ng r

ise

to it

scl

assi

ficat

ion

as a

per

vasi

ve d

evel

opm

enta

ldi

sord

er.

Aut

ism

is a

rar

e co

nditi

on. S

tudi

es h

ave

dete

rmin

ed it

s pr

eval

ence

to b

e ab

out 4

in 1

0,00

0 (L

otte

r, 1

966;

Ritv

o,F

reem

an, P

ingr

ee, e

t al.,

198

9), a

ndbo

ys w

ith a

utis

m

outn

umbe

r gi

rls 4

:1. T

here

app

ears

to b

e a

gene

tic c

ompo

nent

, as

a fa

mily

with

onc

child

with

aut

ism

has

abo

ut a

9%

ris

kof

hav

ing

a se

cond

cd

with

aut

ism

(Ritv

o.

Jord

e, M

ason

-Bro

ther

s, e

t al.,

198

9).

A H

IST

OR

ICA

L P

ER

SP

EC

TIV

E

Des

pite

its

rarit

y, a

utis

m h

as b

een

the

focu

sof

con

side

rabl

e re

sear

ch s

ince

it w

asfir

st

desc

ribed

in 1

943.

Dr.

Leo

Kan

ner

publ

ishe

dth

c fir

st d

escr

iptio

n of

wha

t hc

calle

d

"aut

istic

dis

turb

ance

s of

affe

ctiv

e co

ntac

t"(K

anne

r, 1

943,

p. 2

17).

He

iden

tifie

d a

grou

p of

chi

ldre

n w

ho e

xhib

ited

sym

ptom

s th

at is

olat

ed th

em fr

omth

eir

envi

ronm

ent

Mar

k Ite

kr, M

.11

, is

Cfi

rica

l Ass

istin

tP

infc

sscr

of P

sych

iatr

y at

The

Uni

.crs

ityf

Pcm

sylv

anii

cf M

edic

ine,

Chi

ldre

n's

Sea

shor

e H

ouse

, in

Phi

lade

lphi

a

407

;.

ding

o: ,:

az o

r di

d no

t spc

ak a

tal

l. In

1.is

a.k

.a.,

the

fund

amen

tald

is-

t al

-:en

os

as "

an in

abili

ty to

rela

te tl

iem

sclv

es in

the

ordi

nary

way

11:

am

: t.::

t.oto

i foa

m th

ehe

ginn

ing

of li

fe"

(p.

Ile o

bser

ved

that

as

not s

eek

to b

e he

ld,

igno

red

or s

hut o

ut a

ny s

ocia

l ape

:eat

ed ;a

-ate

a.:

o',;c

, :<

, end

ma

le m

inim

al e

ye c

onta

ct. I

nad

ditio

n, c

hil-

d-ea

atm

're

oa..

7ed

saol

t a r

atar

oess

in th

eir

envi

ronm

ent t

hat e

ven

am

inor

rle

,ta

po;:'

:ort

ing

of a

el:a

irthr

ewth

em in

to a

rag

e. A

mon

g

area

k,:s

eal f

eatu

res

of la

ngua

gein

clud

ed p

arro

t-hk

e

.:.r

a- e

:, so

me:

ones

utte

red

long

afte

r th

ey s

vere

hea

rd(d

elay

ed e

cho-

f-c

;it

tend

ency

to r

epea

tpr

onou

ns a

s he

ard

(e.g

.,us

ing

Pla

y la

as

repe

titiv

e an

d st

eteo

tapa

d, w

ith li

ttle

imag

inat

ive

eit

nte

d th

at 'h

e pa

rc:o

s of

thes

ech

ildre

n te

nded

to

a...

imer

pers

onal

:cla

tinas

h:ps

, Lot

spe

cula

ted

that

the

diso

r-

2.5:

::).

:oK

anne

r'a d

csen

ap'io

n. "

cold

"an

d "a

loof

par

ents

wer

e

',:e

z ao

titan

. 1.ft

re

7tin

t1y,

autis

m h

as k

en a

;coo

ed a

s a

s; c

:'-

eal (

nig:

not t

s its

the

chid

-l's

own

biol

ogy.

Con

-

n,,

. es

ea a

r.er

the

sy:o

pt o

ols

that

con

stitu

teth

e co

re fe

atur

es

at: s

o-i;

L.:s

tied

the

chlid

's it

abili

ty to

rel

ate,

sih

ile o

ther

re-

ted

'Ma

toe

tang

o an

edi

stur

bane

c, o

r a

cer-

n.s

the

e,<

croi

alre

ater

c. D

enni

onn

of th

eto

ndo-

'tta

rt, a

s it

will

hel

p to

dire

ct r

esea

rch

tow

ard

to a

dlo

a: c

eor

ater

l.:::

autis

m.

it'a:

a1:

,'

inee

l 'el

of t

he 1

6 cr

iteria

limed

in th

e

fon:

.o.

: ',le

e'!.7

4)."

ilers

(r.

sm-u

i.R)(

Am

erio

anN

y-

., ''

'cr

iteria

fall

inlo

thre

e. b

road

:Mea

t)-

ir.te

ne'i

4-.7

2_Z

npai

n1at

r1t

ti co

mm

.uni

catio

n

,dto

o.

-per

toire

of a

otiv

ities

and

inte

r-

n.tit

eria

, tah

e:co

entti

ve, a

nd

;a

r..,,

:;!rt

tar:

ti ,a

r.du

. The

sev

erita

' oft

h;.1

:,1 ,.

tao

itett

Jfio

:ta. A

utis

m c

ar. t

oecu

r in

child

ren

::.-

e :`

:lu

min

uni;a

C:n

so-

...,

in v

.atte

om

erta

l ;et

a:do

t:a:I

and

ater

eo-

:

la' o

s.te

l.ram

! tae

ton

lain

ctita

l pio

h-

,oa

tas

hle

s-td

td th

ree

type

; of

1al

ono

intio

n, e

otio

"..,

:r0,

,Itld

un-

!1it'

. trI

,l f r

m, a

ppea

rs a

sla

A o

f int

eres

t in

thc

nf c

c co

aaro

t,du

ais

v. 1

th r

escr

e

Tab

le 2

2.1.

Dia

gnos

tic c

riter

ia fo

r au

tism

At l

east

8 o

f the

follo

win

g16

item

s sq

ould

be

pres

ent.

The

chi

ld s

houl

d ex

hibi

t atle

ast t

wo

item

s fr

om G

roup

A, o

nefr

om G

roup

13,

and

one

from

Gro

up C

. (T

heex

ampl

es a

te a

r-

rang

ed s

o th

at th

ose

first

men

tione

d ar

e m

ore

likel

y to

appl

y to

you

nger

chi

ldre

n or

child

ren

with

mor

e se

vere

aut

ism

,an

d th

e la

ter

exam

ples

ale

mor

e lik

ely

to a

pply

tool

der

child

ren

or

child

ren

with

less

sev

ere

autis

m.)

Gro

up A

Qua

litat

ive

impa

irmen

t in

soci

al in

tera

ctio

n as

man

ifest

ed b

y th

e fo

llow

ing:

I.M

arke

d la

ck o

f aw

aren

ess

of th

e ex

iste

nce

of o

ther

s or

thei

r fe

elin

gs

2.N

o ef

fort

or

an a

bnor

mal

effo

rt to

see

k co

mfo

rt a

ttimes

of d

imre

ss (

e. g

. , d

ocs

notc

ome

for

com

fort

eve

n w

hen

ill,

hurt

, or

tircd

); s

eeks

com

fort

in a

ste

reot

yped

way

(e.g

., sa

ys

"che

ese,

che

ese,

che

ese"

v.he

neve

r hu

rt)

3.N

o im

itatio

n or

impa

ired

imita

tion

(e.g

., do

es n

ot w

ave

bye-

bye,

'^es

not

cop

ym

othe

r's

dom

estic

act

iviti

es,m

echa

nica

lly im

itate

s ot

hers

'ac

tions

out

of c

onte

xt)

4.N

o so

cial

pla

y or

abn

orm

also

cial

pla

y (e

.g.,

does

not

activ

ely

part

icip

ate

insi

mpl

e ga

mes

,

pref

ers

solit

ary

play

activ

ities

, inv

olve

s ot

her

child

ren

in p

lay

only

as

"mec

hani

cal a

ids"

)

5.G

ross

impa

irmen

t in

abili

ty to

mak

e pe

erfr

iend

ship

s (e

.g.,

no in

tere

stin

mak

ing

peer

frie

ndsh

ips;

lack

s un

ders

tano

ling

of c

onve

ntio

ns o

f soc

ia)

inte

ract

ion

(e.g

., rc

ads

tele

phon

e

book

to u

nint

eres

ted

peer

))G

roup

II

Qua

litat

ive

impa

imse

nt in

verb

al a

nd n

onve

rbal

com

mun

icat

ion

and

in im

agin

ativ

eac

tivity

as

man

ifest

ed b

y th

e fo

llow

ing:

I.N

o m

ode

of c

omm

unic

atio

n

2.M

arke

dly

abno

rmal

nonv

erba

l com

mun

icat

ien

(c.c

., do

es n

ot a

ntic

ipat

ebe

ing

held

.

stiff

ens

whe

n he

ld, d

oes

not

look

at t

he p

erso

n cr

smite

whe

n m

akin

g a

soci

al a

ppro

ach,

does

not

gre

et p

aren

ts o

rvi

sito

rs, s

tare

s fix

edly

inso

cial

situ

atio

ns)

3.A

bsen

ce o

f im

agin

ativ

eac

tivity

(e.

g.. n

o pl

ayac

ting

of a

dult

role

s, fa

ntas

ych

arac

ters

, or

anim

als;

lack

of i

nter

est i

nst

orie

s ab

out i

nsag

inar

yes

ents

)

4.M

aske

d ab

norm

aliti

es in

spee

ch p

todu

ctio

n, in

clud

ing

volu

me,

pitc

h, s

tres

s, r

ate,

rhyt

hm,

and

into

natio

n (e

.g.,

mon

oton

ous

tone

,qu

estio

n-lik

e m

elod

y, h

igh

pitc

h)

5.M

arke

d ab

norm

aliti

es in

the

form

or

cont

ent o

fspe

ech.

incl

udin

gst

ereo

type

d an

d re

peti-

rise

use

of s

peec

h (e

.g.,

imm

edia

te c

chol

alia

,m

echa

nica

l rep

etiti

on o

fte

levi

sion

com

mer

-

cial

); u

se o

f "yo

u" w

hen

"I"

is m

eant

(e.

g., u

sing

"You

wan

t coo

kie?

" to

mea

n"I

wan

t a

cook

ie")

; idi

osyn

crat

ic u

seof

sso

rds

or p

hras

es(e

.g.,

"Go

on g

reen

ridin

g" to

mea

n "1

'sai

d to

go

on th

esw

ing"

); o

r fr

eque

ntirr

elev

ant r

emar

ks (

e.g.

, sta

rts

talk

ing

abou

t tra

m

sche

dule

s du

ring

aco

nver

satio

n ab

out s

port

s)

6.M

arke

dly

impa

ired

abili

ty to

initi

ate

or s

usta

in c

onve

rsat

ions

with

oth

ers,

des

pite

ade

quat

e

slec

ch (

e.g.

, len

gthy

mon

olog

ues

on o

ne s

obje

ctre

gald

tess

of i

nter

ject

ions

from

oth

ers)

Gro

up C

Mai

laiit

y re

stric

ted

repe

ttoire

of a

ctiv

ities

ani

inte

rest

s as

man

ifest

ed b

yth

e fo

llow

ing:

I.S

trte

otsp

ed b

ody

mos

emen

ts(e

.g.,

hand

flic

king

,ha

nd tw

istin

g, s

pinn

ing,

head

ban

g-

ing,

cc-

trip

lex

who

le-b

ody

mov

emen

ts)

2P

erm

s'en

t pre

occu

patio

nw

ith p

arts

of o

hjec

ts(e

.g.,

sniff

ing

u sm

ellin

gob

ject

s, ir

ectit

i.e

feel

ing

of te

xtur

e of

mat

eria

ls, s

pinn

ing

whe

els

of to

y ea

rs)

or a

stac

hnan

ttu u

nusu

al o

b.

ic(1

5 (e

.g.,

insi

sts

onca

rryi

ng a

roun

d a

piec

eof

str

ing)

3.M

rake

d di

stre

ss o

ver

chan

ges

in tr

ivia

l 3C

[X-C

tsf e

r,s

ironm

ent

, whe

n a

vase

is

trl'.

.tCd

fron

t US

W' r

oSil1

011)

4lit

:rea

sona

ble

ilisi

ct.ie

e on

follo

win

g ro

unr.

es in

pre

cise

deta

il (e

.g.,

insi

stin

gth

at e

aact

ly

tIc 5

.1tfI

Csk

hen

411o

rpdt

o

5.).

lat'.

edly

test

riena

l ran

geof

inte

rest

s an

d a

preo

ccup

atio

n w

ith o

ne n

atro

win

tere

st (

e.g.

,

alia

nrog

cits

irets

. am

assi

ngfa

cts

abou

t met

enro

loey

,rie

tenJ

ing

to Iv

a ta

ut a

cych

arac

ter)

-A

far

c.1

fions

Am

enca

nP

at.c

i-aat

ri: A

rcyc

,atio

l(I

ttt,.?

).

BE

ST

CO

PY

AV

AIL

AB

LE

EN

wym

Dis

,mi!

TIE

S

riat

ism

cle

ms:

::,:e

ext

rem

e al

oofn

ess

and

tota

l ind

iffe

renc

e to

oth

er p

eopl

e. T

heim

pair

ed s

ocia

l com

mun

icat

ion,

is c

hara

cter

ized

by

an a

bsen

ce(.

:...c

a.m

ieri

he

exeh

ane.

: of

smile

s an

d fe

elin

gs (

i.c.,

body

lang

uage

). T

his

char

ac-

leri

,.t;e

may

he

obvi

on.;

as e

arly

as

the

firs

t 2-3

mon

ths

of li

fe, t

houg

h it

ofte

n go

esni

scun

tii o

ther

def

icits

bec

ome

mor

e ob

viou

s (S

tone

, Lem

anek

, Fis

hel,

so.:i

al c

omm

unic

a:io

n al

so im

plie

s a

lack

of

desi

re to

cor

nmu-

with

oth

ers

or c

omm

unic

atio

n :i.

limite

d to

the

sim

ple

expr

essi

on o

f ne

eds.

impa

ired

soc

ial i

mag

inat

ion

and

unde

rsta

ndin

g, r

efer

s to

the

ie.:U

:1:y

to im

itate

and

enga

ge in

pre

tend

pla

y or

to im

agin

e an

othe

r's th

ough

tsfe

r:in

gs. F

or e

xam

ple.

infa

nts

with

this

def

icit

do n

ot c

opy

thci

r m

othe

rs' f

acia

l

Oth

ir s

oc:a

l def

icits

ass

ocia

tai w

ith a

utis

m in

clud

e no

t see

king

com

fort

whe

nla

cl:;n

g in

t:nes

t in

form

ieg

frie

ndsh

ips.

It i

s un

clea

r w

heth

er c

hild

ren

with

au:is

ino

eot i

i:spl

ay n

nrin

al a

ttach

men

t beh

avio

r or

do

not u

nder

stan

d re

latio

nshi

psfo

im th

em (

fler

tzig

, Sno

w, &

She

rman

, 198

9; S

hapi

ro, P

ros,

i, &

'5;

gman

& M

undy

, 198

9).

tena

nuni

cniio

n D

isor

ders

In.

en w

eh a

utis

m, t

he d

evel

opm

ent o

f la

ngua

ge is

sev

erel

y de

laye

d an

d de

vian

t,he

trrr

iIo

th C

XtC

-id

rec

eptiv

e co

mm

unic

atio

n (F

erra

ri, 1

982)

. Coo

ing

and

de,,,

elop

nom

inal

ly in

thc

firs

t 6 m

onth

s of

life

, but

then

may

rcg

rcss

.m

ay;a

te o

r no

t at a

il. A

bout

hal

f of

chi

ldre

n w

ith a

utis

m r

emai

n m

ute

::IT

C:i-

-tr:

thei

r lis

es a

nd m

ay e

ven

be u

nabl

e tO

use

ges

ture

s or

sim

ts to

com

mun

i-es

'e ie

o.:te

r, 1

9:35

a). T

hose

v.h

o de

velo

p la

ngua

ge (

i7i

use

it cr

eativ

ely

or s

pont

a-m

it,'y

. The

ir %

oice

c ar

e of

ten

high

-pitc

hed,

with

uns

ual s

peec

h rh

ythm

and

into

na-

'.e,

mak

es th

eir

sree

ch s

ound

sin

g-so

ng o

r m

onot

onou

s. T

hey

tend

to u

se:n

a v

t:ry

ster

eoty

?ed,

rot

e fa

s1. e

xhib

iting

exc

elle

nt m

emor

izat

ion

skill

s'

Lo:

nmon

ieat

ing

very

littl

e, if

any

, mea

ning

. The

y te

nd to

rep

eat p

hras

esei

gjin

i;lcs

. Whi

le it

may

see

m th

at th

ey a

rc u

nder

st tn

ding

wha

tM

ey a

re u

sual

ly p

arro

ting

wha

t the

y ha

ve h

eard

. Des

pite

goo

d:ir

dirn

ade

.;uat

e ..o

cabu

lary

, the

se c

hild

ren

have

a s

ever

e ex

pres

sive

lan-

is a

ffec

ted

as w

ell.

Chi

ldre

n w

ith a

utis

m m

ay r

espo

nd to

the:

,`2

;:r.l

it ',c

ry d

iffi

cult

to u

nder

stao

d m

ore

com

plex

com

man

ds.

lvi

sual

than

with

aud

itory

cue

sAt o

ne p

oint

, lan

guag

e de

fici

tsim

ary

caus

e of

soc

ial w

ithdr

av:a

l in

child

ren

with

aut

ism

, but

ear

kled

as

seco

ndar

y to

the

brai

n ab

norm

ality

that

cau

ses

the

funn

!:1:

1-cr

Ita

dirc

.,!zr

in r

elat

ing

to o

ther

peo

ple

(Pau

l, 19

87).

Dev

elop

men

t of

rias

.! p

ro7.

nnst

ic f

eatu

re in

aut

ism

. Chi

ldre

n ,v

hove

lop

Ian-

-t r

s.in

thos

e A

li) d

o no

t (Sc

hici

bman

, 198

8).

r

Pr.

inpa

rtic

ular

ly th

e te

stri

cted

beh

avio

r re

pert

oire

and

- c:

--;

.,n..e

to;R

um-l

ento

l eha

n.,,,

e, a

re a

mon

g th

e m

ost s

trik

ing

feat

ures

of

9 t)

AU

TIS

M/

411

the

diso

rder

. Obs

essi

ve r

itual

s an

d st

rict

adh

eren

ce to

rou

tincs

are

com

mon

; inc

lud-

ing,

for

exa

mpl

e, r

igid

insi

sten

ce in

eat

ing

at th

e sa

me

time

ever

y da

y an

d ea

ting

are

stri

cted

men

u of

foo

ds, s

ittin

g in

exa

ctly

the

sam

e po

si*:

a a

t the

tabl

e, p

laci

ngob

ject

s in

a p

artic

...1a

r lo

catio

n, a

nd to

uchi

ng e

very

doo

r ,-

lob

one

pass

es. Y

ouni

,ch

ildre

n w

ith a

utis

m m

ay s

how

inte

nse

atta

chm

ent t

o un

usua

l obj

ects

, suc

h as

a p

iece

of p

last

ic tu

bing

, rat

her

than

a c

uddl

y ite

m li

ke a

tedd

y be

ar. T

hey

may

not

use

toys

inth

eir

inte

nded

man

ner,

but

foc

us in

stea

d on

a p

art o

f a

toy,

suc

h as

the

whe

els

on 1

, toy

truc

k, w

hich

they

may

spi

n in

cess

antly

. A c

omm

on f

orm

of

play

is to

line

obj

ects

up

in r

ows.

Shi

ning

sur

face

s, r

otat

ing

fans

, and

peo

ple'

s ha

ir o

r be

ards

may

fas

cina

teth

ese

youn

g ch

ildre

n. O

lder

, mor

e co

gniti

vely

adv

ance

d in

divi

dual

s m

ay b

ecom

e in

-te

nsel

y pr

eocc

upie

d w

ith tr

ain

sche

dule

s, c

alen

dars

, or

part

icul

ar p

atte

rns

of n

umer

i-ca

l rel

atio

nshi

ps. T

hey

will

foc

us o

n th

ese

thin

gs to

the

excl

usio

n of

oth

er a

ctiv

ities

.Fr

eque

ntly

, chi

ldre

n w

ith a

utis

m b

ecom

e up

set a

nd h

ave

inte

nse

tant

rum

s if

any

-th

ing

inte

rfer

es w

ith th

ese

ritu

als

and

preo

ccup

atio

ns. S

imila

r ta

ntru

ms

may

bc

prov

oked

by

triv

ial d

epar

ture

s fr

om d

aily

rou

tines

or

chan

ges

in th

e en

viro

nmen

t.St

ereo

type

d m

ovem

ents

and

sel

f-st

imul

atin

g be

havi

ors,

suc

h as

roc

king

, han

d w

av-

ing,

arm

fla

ppin

g, to

e w

alki

ng, h

ead

bang

ing,

and

oth

er f

orm

s of

sel

f-in

juri

ous

be-

havi

or a

re a

lso

com

mon

, esp

ecia

lly a

mon

g ch

ildre

n w

ith a

utis

m w

ho h

ave

low

IQ

s&

Rut

ter,

198

7).

Oth

er b

ehav

ior

prob

lem

s as

soci

ated

with

aut

ism

incl

ude

slee

p di

stur

banc

es (

es-

peci

ally

in y

oung

er c

hild

ren)

, sho

rt a

ttent

ion

span

s, h

yper

activ

ity, t

antr

ums,

and

ag-

gres

sive

ness

. The

se b

ehav

iors

, whi

le n

ot s

peci

fic

to a

utis

m, m

ay b

c as

dif

ficu

lt to

man

age

as th

e ch

arac

teri

stic

s of

aut

ism

.

Inte

llect

ual F

unct

ioni

ng

Chi

ldre

n w

ith a

utis

m f

unct

ion

at v

ario

us le

vels

in th

e in

telle

ctua

l spe

ctru

m. H

owev

er,.

abou

t 70%

hav

e m

enta

l ret

arda

tion:

35%

hav

e m

ild r

etar

datio

n, 1

5% h

ave

mod

erat

ere

tard

atio

n, a

nd 2

0% h

ave

seve

re o

r pr

ofou

nd r

etar

datio

n. T

wen

ty-f

ive

perc

ent f

all i

nth

e bo

rder

line-

to-n

orm

al r

ange

of

inte

llige

nce

(IQ

70-

100)

and

abo

ut 5

% h

ave

IQs

over

100

(M

insh

ew &

Pay

ton,

198

8).

Psyc

holo

gica

l tes

ting

can

be p

erfo

rmed

on

child

ren

with

aut

ism

, and

the

resu

lt-an

t 1Q

s ap

pear

to b

e fa

irly

acc

urat

e, p

rovi

ding

the

test

ing

is d

one

by a

psy

chol

ogis

tw

ho is

exp

erie

nced

in w

orki

ng w

ith s

uch

child

ren.

Thc

test

s m

ay n

eed

to b

e ad

apte

d,or

non

verb

al te

sts

may

be

need

ed b

ecau

se th

e pe

rfor

man

ce o

f ch

ildre

n w

ith a

utis

m is

unev

en .

The

y te

ndlo

piff

areu

leite

r_on

.lest

solil

isua

Lsp

atia

Lsk

i.tha

nd _

plc

mem

ory.

and

poor

er o

n ta

sks

requ

irin

g sy

mbo

lic a

nd lo

gica

l rea

soni

ng. S

ome

child

ren

with

aini

sm h

ave

rest

rict

ed a

reas

of

high

er f

und6

ing,

c..1

1ed

isle

ts o

f ahj

Iisnr

snl

inte

rsk

ills.

The

se in

clud

e m

usic

al s

kills

, suc

h as

per

fect

pitc

h, e

xcep

ti. :

m m

emor

y,an

iniu

sual

cap

acity

for

jigs

aw p

uzzl

es, o

r th

e ab

ility

to d

o ra

pid

calc

ulat

ions

of

asp

ecif

ic k

ind,

suc

h as

fin

ding

the

day

of th

e w

eek

for

dist

ant d

ates

. Usu

ally

, the

sesp

iinte

r sk

ills

rela

te to

the

indi

vidu

al's

sel

ecte

d ar

ca o

f pr

eocc

upat

ion

and

do n

ot h

elp

them

to s

olve

pro

blem

s in

dai

ly li

fe. E

ven

if th

e sp

linte

r sk

ill in

volv

es s

onic

use

ful

func

tion,

the

child

with

aut

ism

is o

ften

not

abl

e to

app

ly th

e sk

ill to

rea

l lif

e ev

ents

.

BE

ST C

OPY

AV

AII

AB

LE

9

42:

v te

n 1)

1s,.i

ntri

ars

...tis

irt a

; e a

het

erog

eneo

usgr

oup,

ther

e is

no

cons

iste

nt p

at-

naur

olog

lzal

abn

orm

aliti

es.

A r

ange

of

scns

ory

dist

urba

nces

has

keen

inch

.:thr

t; hu

di u

nder

-an

d ov

erse

nsiti

vity

toce

rtai

n so

unds

, ind

if-

`cre

:-.:.

:an

d a

pre

.ere

ncr.

: for

cert

ain

sens

atio

ns, s

uch

asth

ose

that

app

eal t

o

;ast

c zn

ira

ther

than

touc

h or

soun

d. M

ost c

hild

ren

with

aut

ism

arc

clu

msy

and

,se

me

i. c

a"..n

orm

aliti

es o

f po

stur

ean

d m

ovem

ent (

DeM

)er,

1976

). E

EG

',-7.

0.1.

v 80

% o

f ch

ildre

nw

ith a

utis

m, b

ut th

ein

cide

nceo

f se

izur

es

s:

d:r.

'Icre

nt t-

roth

the

T.P

.,-.7

C:F

.::-E

TFr

EiT

ildre

n w

ith c

omm

unic

atio

ndi

s-

.1:

/)!:

Rap

in, &

Shi

nnat

, 199

1).

t'At.:

41-:

: tM

A',1

1SN

I -.ar

ly u

nive

rsal

agr

eem

entth

at a

utis

m is

cau

sed

by s

ome

form

of

in b

rain

dev

t.:lo

pmen

t(Col

eman

& G

illbe

rg,

1985

; Lor

d,

a:.,

,t;

;*15

0r!9

,./1)

.ho

i'..e

nee

for

this

inci

udes

C

!: 1

.2G

v:;n

o.:li

tie!i

2iIl

lein

crea

sed

inci

denc

e of

autis

m in

cer

tain

:%

:1!i

i!\

1.0

caus

e br

ain

dam

age,

suc

h as

u::-

-nre

dph

enyl

ketc

nuri

a

"I; a

nd c

,r,,,

;eni

tai

i",,i

tztio

nsah

e hi

gh f

requ

ency

of m

enta

l

rasi

; and

',:4,

19e

high

inci

denc

e. o

f pr

enat

alin

fect

ions

,

tr,.u

:na,

and

SO

en

'',1-

yson

, Sm

ith, 3

:E

astw

ocd,

198

8; M

ason

-

,c:

190)

. The

y! C

aser

vatio

nssu

gges

t tha

t aut

ism

may

::ir

. a n

umbe

r of

way

s,in

clud

ing

gene

tic a

bnor

mal

-

mre

tal i

nflu

cn,:e

:;,an

d th

at !

he d

amag

e m

aybe

ana

:om

ical

, phy

s-

base

d on

it:r

stud

ies

and

mm

inat

ions

of th

e

."'

.1;)

hav

e di

ed, h

ave

iden

tifie

d ab

norm

aliti

esin

thc

t'ne

I.C

.ner

t_he

sne,

199

1; C

ourc

hesn

e,Y

eung

-Cou

rche

sne,

t.

l'ree

man

, S:-

hei;:

el, e

tal.,

MO

) ?r

d th

ece

rebr

al c

nrte

x

,t

nth,

gs

Juck

as ti

les:

. :na

ypr

ovid

e in

for-

he a

mus

e of

bra

indt

nel.:

;pm

ent t

he it

'noi

tnal

ities

dese

lope

d.

i:npF

cate

d va

riou

sne

urot

tans

mi't

er th

itaba

nces

in

ccn:

;ste

ntly

(.V

oit:m

ar &

Coh

en. 1

91).

Som

e re

cent

rear

ch

hetv

.,!en

chi

ldre

n w

ithau

tism

and

:,ni

mal

s gi

ven

opia

tes

sur:

gevi

ng th

at a

hnrn

mal

ities

in th

ese

leve

ls m

aypl

y

..et

al.,

VM

; `..'

eung

,L

oan,

New

corn

,

'ne

.. in

' een

sue

7.fe

d by

sIad

ics

that

lias,

erid

enti6

ed

ati.a

u11

111.

).vr

_a_k

m.r

.ul_

yr_t

v:lic

-caq

srof

bra

inin

jury

.

s:,.:

11:c

me

;Ilr

egm

an,

Lee

kman

, & O

tt 19

83;

Rei

ss &

Fre

und,

'In ic

.cc

sho

wn

that

autis

m n

ccur

s et

hig

her

rate

sam

ong

iden

tical

!hal

ani

, in

f: :t

ic;

twin

s (F

olst

ein

& P

iven

,19

91; S

mal

ley,

Asa

rtm

w,

:1:;

rid:

of

auti.

an is

muc

h hi

gher

in f

amili

esw

ith o

ne c

hild

9

1

r

4.1

AU

TIS

M/

413

with

aut

ism

than

in th

e ge

nera

l pop

ulat

ion.

Tak

en to

geth

er, t

hese

stud

ies

indi

cate

a

gene

tic p

redi

spos

ition

to a

utis

m.

DIS

TIN

GU

ISH

ING

AU

TIS

M F

RO

M O

TH

ER

DE

VE

LO

PME

NT

AL

DIS

AB

ILIT

IES

Sinc

e in

terv

entio

n st

rate

gies

var

y ac

cord

ing

to d

iagn

osis

, it i

sim

port

ant t

o di

stin

-

guis

h au

tism

fro

m o

ther

dev

elop

men

tal d

isab

ilitie

s. T

he m

ost c

omm

ondi

sord

ers

that

are

mis

take

n fo

r au

tism

are

men

tal

reta

rdat

ion,

chi

ldho

od p

sych

osis

, sen

sory

impa

ir-

men

ts, d

evel

opm

enta

l lan

guag

e di

sord

ers,

and

prog

ress

ive

nerv

ous

syst

em d

isor

ders

.

Aut

ism

is d

istin

guis

hed

from

men

tal r

etar

datio

n by

its

char

acte

rist

icso

cial

and

beha

vior

pro

blem

s an

d by

a s

omew

hat d

iffe

rent

pat

tern

of

cogn

itive

defi

cits

. Chi

ldre

n

v..it

h au

tism

shu

n so

cial

inte

ract

ions

and

trea

t eve

ryon

e, e

ven

pare

nts,

as

obje

cts;

chi

l-

dren

with

men

tal r

etar

datio

n ge

nera

lly e

njoy

soc

ial c

onta

c:C

hild

ren

with

men

tal

reta

rdat

ion

usua

lly h

ave

equa

l del

ays

in la

ngua

ge, c

ogni

tive,

and

visu

al-p

erce

ptua

l

skill

s, w

here

as c

hild

ren

with

aut

ism

hav

e m

ore

prom

inen

tla

ngua

ge im

pair

men

ts.

How

ever

, mos

t chi

ldre

n w

ith a

utis

m a

lso

have

men

tal r

etar

datio

n, a

nd m

any

indi

vid-

uals

with

sev

eie

men

tal r

etar

datio

n di

spla

y au

tistic

fea

ture

s,su

ch a

s st

ereo

type

d

mov

emen

ts a

nd s

elf-

inju

ry (

Cap

ute,

Dcr

ivan

, Cha

uvel

, eta

l., 1

975)

.

Aut

ism

may

als

o be

con

fuse

d w

ith p

sych

iatr

ic d

isor

ders

, suc

h as

schi

zoph

reni

a

(Am

eric

an P

sych

iatr

ic A

ssoc

iatio

n, 1

937)

. The

key

dif

fere

nce

betw

een

thc

two

syn-

drom

es is

age

of

onse

t. A

utis

m b

egin

s in

the

hrst

3 y

ears

ot

file

, whi

1eT

S-C

1iT

z7f5

hren

ia

rz-T

ely-

Star

f be

lore

aT

iole

scen

ce. F

urth

erer

e, w

hile

the

child

with

aut

ism

may

be-

have

in a

biz

arre

man

ner,

he

or s

he w

ill n

ot h

ave

the

delu

sion

san

d ha

lluci

natio

ns th

at

arc

char

acte

rist

ic o

f sc

hizo

phre

nic.

In

addi

tion,

whi

le a

chi

ld w

ith a

utis

m la

cks

imag

-

inat

ion,

a c

hild

with

sch

izop

hren

ia m

ay li

ve in

a f

anta

sy w

orld

. Fin

ally

,chi

ldre

n w

ith

schi

zoph

reni

a do

not

usu

ally

hav

e m

enta

l ret

arda

tion

(see

Cha

pter

23)

.C

hild

ren

with

sen

sory

impa

irm

ents

may

als

o de

mon

stra

teau

tistic

fea

ture

s.

Chi

ldre

n w

ith v

isua

l im

pair

men

t oft

en d

ispl

ay s

elf-

stim

ulat

ory

beha

vior

s an

d la

ckth

c

skill

s ne

cess

ary

for

inte

rper

sona

l int

erac

tions

. The

y do

no'

cra

ve th

e gl

obal

lang

uage

diso

rder

that

dis

tingu

ishe

s ch

ildre

n w

ith a

utis

m, a

nd th

eir

inte

llige

nce

is u

sual

ly n

or-

mal

. Fur

ther

mor

e, if

ther

e is

impr

ovem

ent i

n th

eir

sens

ory

func

tion,

the

autis

ticfe

a-

ture

s di

sapp

ear.

Thi

s m

akes

it e

xtre

mel

y im

port

ant f

or th

e vi

sion

and

hear

ing

of c

hil-

dren

'Pith

aut

istic

beh

avio

rs to

be

test

ed b

efor

e th

e di

agno

sis

of a

utis

m is

con

firm

ed.

Sim

ilarl

y, c

hild

ren

with

dev

elop

men

tal l

angu

age

diso

rder

s m

ay d

ispl

ay s

hyne

ss,

echo

lalia

, and

som

e so

cial

with

draw

al (

see

Cha

pter

19)

, but

they

typi

cally

do

not

show

the

devi

ant l

angu

age

feat

ures

of

autis

m, s

uch

as s

tere

otyp

ed u

ttera

nces

, abn

or-

mal

soc

ial i

nter

actio

ns, b

izar

re b

ehav

iors

, and

abs

ence

of

a de

sird

to c

omm

unic

ate

(Rut

ter,

198

5a).

Fina

lly, a

gro

up o

f pr

ogre

ssiv

e ne

urol

ogic

al d

isea

ses

initi

ally

may

be

mis

diag

-no

sed

as a

ntis

in. C

hild

ren

with

thes

e di

sord

ers

deve

lop

norm

ally

in in

fanc

y, th

en s

tart

to lo

se b

orh

inte

llect

ual a

nd m

otor

ski

lls, a

nd f

all b

ehin

d (M

enke

s, 1

990)

. One

exa

m-

* is

Rea

syn

drcm

c (H

ogbe

rg, A

ic..

!)ia

s, e

t al.,

198

3; P

ercy

, Zog

hbi,

Lew

is, e

t al.,

1987

). A

lthou

gh c

hild

ren

with

aut

ism

may

als

o se

em to

reg

ress

in th

eir

deve

lopm

ent,

Lk

it lo

ss o

f sk

ills

is u

sual

ly r

estr

iLts

..la

ngua

ge. F

urth

erm

ore,

mos

t chi

ldre

n w

ith

PE

ST

CO

PY

AV

AIL

AB

LE9

o

4;4

/it

tick5

u IT

IES

autil

a:-.

hay

.: pr

.:11

cial

i.ev

elop

men

tth

at c

an b

e tr

aced

to th

e fi

rst y

car

of li

fe.

C.:1

0t.s

is,..

,res

sive

neu

rolo

gica

ldiso

rder

bec

omes

evid

ent a

s ab

ilitie

s co

n-

deli:

tic:a

te o

ver

time.

.

Tes

tilig

for

Aut

ism

The

re is

r.o

sp,

- ei

nem

edic

al te

st f

orau

tism

. Blo

od te

sts

and

EE

Gs

may

be

abno

rmal

,

but i

re n

onT

reifi

c.H

owev

er, t

ests

may

be c

ondu

cted

toid

entif

y sy

ndro

mes

com

-

mon

lyas

soci

a:e-

uw

ilth

autis

m a

ndto

rul

e ou

tot

her

expl

anat

ions

for

abno

rmal

beh

av-

ior.

For

exam

ple;

4ch

rom

osom

e st

udy

wou

ld b

e pe

rfor

med

if f

ragi

le X

syn

drom

eis

sus;

,cct

zd (

scc

Cha

pter

16);

met

abol

icst

udie

s m

ight

be

orde

red

to te

st f

orPK

U o

r

othe

r in

17or

n er

rors

of m

etab

olis

m;

and

an M

R1

scan

may

be d

one

to.

abno

r-

rnal

:ties

in th

e co

rtex

or

ceie

bellu

m.

t:t..k

r.tE

NT

AN

DIN

T11

;vE

NrI

oNA

PPR

OA

CH

ES

Miz

hael

i'su

tte r

, an

emin

ent B

ritis

hch

ild p

sych

iatr

ist,

has

outli

ned

five

mai

n go

als

of

tho

trea

tmen

tof a

utis

m:

I) th

e fo

ster

ing

of n

orm

al d

evel

opm

ent,

2) th

e pr

omot

ion

of

icar

mng

, 35

the

redu

ctio

n of

rig

idity

and

ster

eoty

py,.4

) th

e el

imin

atio

nof

nons

peci

fic

e be

havi

ors,

and

5) th

e al

levi

atio

nof

fam

ily d

istr

ess

(Rut

ter,

193

5b).

goal

s ar

c be

stm

et th

roug

h a

com

preh

ensi

veed

ucat

iona

l and

beha

vior

m,.e

nt p

loar

amth

at in

clud

es a

hig

hly

stru

ctur

ed e

duca

tion

setti

ng,

lang

uage

tr..n

ung,

beha

vwra

l int

erve

ntio

ns,

posi

tive

soci

alex

perie

nces

, and

inte

nsiv

e pa

rent

ha &

Rut

ter,

198

7;R

oger

s &

Lew

is,

1939

; Sch

reib

ruan

,19

38).

T;c

atm

ei,t

begi

n as

ear

ly a

spo

ssib

le, a

s th

ere

is s

ome

evid

ence

that

ear

ly in

ter-

of c

omm

unic

atio

nsk

ills

can

less

enla

ter

mal

adap

tive

Pri-

z.an

t ,f1

t Wet

herb

y,19

38).

Pel!

tiv:

it:T

y m

ay c

need

ed to

mod

ify

Jeha

vior

s th

at m

ight

othe

rwis

e in

ter-

:ere

with

dev

cicp

mcn

tand

lear

ning

.R

educ

tion

in s

tere

otyp

ical

,rig

id,rit

ualis

tic, a

nd

rhas

iors

(e.

g., t

antr

ums,

aggr

essi

on, s

elf-

inju

ry)

may

be

acco

mpl

ishe

d

of b

ehav

iora

lstra

tegi

es. F

or e

xam

ple,

beha

vior

sha

ping

can

help

to

i:ica

llyre

info

rce

appr

oxim

atio

nsof

desi

red

com

mun

icat

ivebc

hav-

rw

itndr

av..:

iLI

rei

nfor

cem

ent c

anhe

lp to

ext

ingu

ish

self

-stim

ulat

ory

beha

v-

2:th

erch

ir :N

al in

terv

entio

nsat

tem

pt to

incr

ease

soc

ial

inte

ract

ion

(Sch

reib

-

i'dre

ttts

arc

ofte

nus

ed a

s co

-the

rapi

sts

in th

ese

form

s of

inte

rven

tion.

terin

l:t!e

s cl

opm

ent m

ustin

clud

e la

ngua

ge th

erap

yw

ith a

n em

phas

is

:ics

of h

i ngu

age

(i.e.

,us

ing

it to

acco

mpl

ish

soci

algo

als)

(Sc

hule

r&

iive

and

mea

ning

ful

ccnv

ersa

tions

sho

uld

be m

odel

edan

d

ro.,1

di,c

oura

ged.

With

child

ren

with

aut

ism

who

are

mut

e,at

-

,'

to tr

ain

etba

l ute

ranc

es,

such

x n

abbl

ing

orja

rgon

ing

Rut

ter,

19

i;"?,

Sch

uler

4: l

'r1/2

nt,

1987

). S

ign

lang

uage

can

also

be a

t-

1: is

of,e

n .1

i( fic

ult

for

chtld

ren

ss it

hau

tism

to le

arn.

Ano

vel

appr

oach

,

:red

ctw

irri

lotic

alle

n,is

now

bei

ngev

alua

ted.

The

bas

iccl

emen

t of

fa-

:,tir

n is

rovi

ding

lilly

sica

l sup

port

to th

e ch

ild's

arm

as h

e C

rsh

e

ke..i

)m.a

%1

ur C

:Imm

unic

atum

boar

d (B

ikle

n,l9

90).

AU

TIS

M/

415

Thi

s is

don

e to

ove

rcom

e dy

spra

xie

that

may

unde

rlie

the

child

's in

abili

ty to

use

a

com

mun

icat

ion

devi

ce in

depe

nden

tly. A

rtan

d m

usic

ther

apy

have

als

o be

en u

scd

in

atte

mpt

s to

com

mun

icat

ew

ith c

hild

ren

with

aut

ism

non

verb

ally

.T

he e

duca

tion

of c

hild

ren

with

aut

ism

usu

ally

requ

ires

high

ly s

truc

ture

d pr

o-

gram

s w

ith p

redi

ctab

lero

utin

es a

nd p

rese

ntat

ion

of m

ater

ial i

n gr

aded

ste

ps(R

oger

s

& L

cwis

, 198

9; R

utte

r, ii

8Sa)

. Chi

ldre

nw

ith a

utis

m s

houl

d be

enr

olle

i in

pres

choo

l

early

inte

rven

tion

prog

ram

sth

at s

tres

s co

mm

unic

atio

n sk

ills

and

soci

al:n

tera

ctio

ns.

By

scho

ol a

ge, m

any

child

ren

with

aut

ism

lear

n ef

fect

ivel

y in

pub

licsc

hool

spe

cial

educ

atio

n cl

asse

s w

ith c

hild

ren

who

func

tion

at s

imila

r de

velo

pmen

tal l

evel

s.C

lass

size

s sh

ould

be

sr.:a

ll, a

nd a

ctiv

ities

shou

ld b

e br

oken

into

sim

ple

subu

nits

to h

old

the

child

ren'

s '1

'e:e

st a

nd d

ecre

ase

ster

eoty

pica

lbeha

vior

. One

-to-

one

inte

ract

ions

with

teac

hers

and

fello

w s

tude

nts

arc

enco

urag

ed s

oth

at c

hild

ren

with

aut

ism

may

dev

elop

soci

al s

kills

. Hig

her

func

tioni

ngch

ildre

n w

ith a

utis

m m

ay b

e in

tegr

ated

into

reg

ular

educ

atio

n se

tting

s.M

edic

atio

ns p

lay

a lim

ited

role

in th

e tr

eatm

ent

ofau

tism

, as

ther

e is

no

phar

ma-

colo

gica

l rem

edy

for

the

diso

rder

(M

insh

ew &

Pay

ton,

198

8). C

erta

inm

edic

atio

ns,

how

ever

, hav

e be

en u

sed

tore

lieve

som

eof

the

sym

ptom

s, in

clud

ing

hype

ract

ivity

,

irrita

ble

moo

d, s

ocia

l with

draw

al, a

nd a

ggre

ssio

n.'Il

se b

cst s

tudi

ed o

f the

se m

edic

a-

tions

is h

alop

erid

ol (

Hal

dol),

a h

igh-

pote

ncy

antip

sych

otic

dru

g th

at h

as b

een

show

n

to b

e ef

fect

ive

in d

ecre

asin

g st

ereo

typi

calb

ehav

iors

, with

draw

al, a

ggre

ssio

n, n

ega-

tivis

m, a

nd ir

ritab

ility

, as

wel

l as

incr

easi

ngpe

rfor

man

ce o

n le

arni

ng ta

sks

(And

er-

son,

Cam

pbel

l, G

rega

, et a

l.,19

84; J

oshi

, Cap

ozzo

li, &

Coy

le, 1

988)

.Unf

ortu

nate

ly,

halo

perid

ol is

als

o as

soci

ated

with

a h

igh

inci

denc

e of

mov

emen

t abn

orm

aliti

es

(Per

ry, C

a:-1

1, A

dam

s, e

t al.,

198

9). A

med

icat

ion

that

onc

e lo

oked

pro

mis

ing

in

autis

m, f

entiu

rarn

ine,

has

mor

e ..e

cent

lybe

en s

how

n to

be

larg

ely

inef

fect

ive.

In

addi

-

tion,

it in

terf

eres

with

dis

crim

inat

ion

lear

ning

and

is p

oorl

y to

lera

ted

(Cam

pbel

l,

Ada

ms,

Sm

all,

et a

l., 1

988;

Ste

rn, W

alke

r,Sa

wye

r,et

al.,

199

0;V

arle

y &

llol

m,

1990

). O

piat

e an

tago

nist

s, s

uch

as n

altr

exon

e, a

rebe

ing

stud

ied

to s

ec if

they

alle

vi-

ate

any

of th

e hy

pera

ctiv

ean

d m

alad

aptiv

e be

havi

ors

asso

ciat

edw

ith a

utis

m. P

relim

i-

nary

rep

orts

sho

w m

ild b

enef

its (

Cam

pbel

l,A

nder

son,

Sm

all,

ct a

l., 1

990)

.

Stim

ulan

ts, u

sed

to tr

eat h

yper

activ

ity, w

ere

form

erly

thou

ght t

o ag

grav

ate

ste-

reot

yped

beh

avio

rs. B

ut, m

ethy

lphe

nida

te(R

italin

) ha

s be

en s

how

n to

be

help

fuli

n

ecnt

rolli

ng h

yper

activ

ity in

som

e ch

ildre

nw

ith a

utis

m (

Bir

mah

er, Q

uint

ana,

Gre

enhi

ll, 1

938;

Str

ayho

rn, R

app,

Don

ina,

et a

l., 1

938)

.C

loni

dine

(C

atap

res)

, a

new

er m

edi:.

'on

for

hype

ract

ivity

, whi

ch w

as d

evel

oped

totr

eat h

yper

tens

ion

in

adul

ts, m

ay a

lso

be u

sefu

l for

trea

ting

hype

ract

ivity

in c

hild

ren

with

aut

ism

. Lith

ium

:614

hasm

anal

sio9

8b7e

)c.n

used

to tr

eat t

he m

anic

-like

sym

ptom

s of

autis

m (

Stc

inga

rd &

Bie

der-

,

r-U

'Pa

rent

s ne

ed e

mot

iona

l sup

port

and

adv

ocac

y an

d, m

ost o

fal

l, sh

ould

be

.314

4br

ough

t Mto

the

trea

tmen

t pro

cess

as

teac

hers

and

co-

ther

apis

ts o

fth

eir

child

ren.

7''T

here

is n

o do

ubt t

hat h

avin

g a

child

with

aut

ism

is e

norr

nor,

' str

essf

ul fo

r th

e fa

m-

..sr

*.dy

. In

addi

tion

to th

e no

rmal

str

esse

s of

hav

ing

a ch

ild w

ith d

isab

ilitie

s,th

ere

are

ikis

.(41

;70)

..7,nu

tyad

ditio

nal d

eman

ds a

s w

ell a

s th

e fr

ustr

atio

n of

car

ing

for

a ch

ildw

ho p

rovi

des

ccw

emot

iona

l rew

ards

, req

uire

s in

tens

e su

perv

isio

n, h

as d

istu

rbed

sle

ep,

and

ex-

:.7.

..14i

tif

:)W

1114

1.14

.,

t

iC

HU

WIT

H D

ISA

BII

ME

S

h;hl

tsth

at is

dit

ficu

lt to

man

age.

If

emot

iona

l pro

blem

sar

ise,

fam

ily c

oun-

sei.t

i?, i

s im

lk.a

ied.

KE

NN

Y: A

CH

ILD

WIE

E A

UT

ISM

Ken

ny h

ad p

robl

ems

from

infa

ncy.

His

ear

ly d

evel

opm

ent w

as d

elay

ed, a

ndhi

s pa

r-

ems

wer

e c:

nite

con

cern

ed th

at K

enny

wou

ld h

ave

men

tal r

etar

datio

n. T

ney

notic

ed

that

Le

did

not "

coo"

or

resp

ond

toso

unds

. lie

did

not

rea

ch o

ut to

be

pick

ed u

p,an

d

he s

eem

ed s

tiff

and

unco

mfo

rtab

le w

hen

they

held

him

. Soo

n, h

is m

otor

dev

elop

men

t

impr

oved

. lie

sat

by

8 m

onth

s an

dw

alke

d by

15

mon

ths.

His

par

ents

bec

ame

hope

ful

that

he

did

not h

ae 'b

rain

dam

age.

" H

eal

so s

how

ed g

ood

visu

al-p

erce

ptua

l ski

lls,

10<

ng a

tik to

pat

toge

ther

sim

ple

puzz

les

by 2

yea

rs o

f ag

e an

d to

bui

ldin

tric

ate

bloc

k

!ew

ers

by n

r.Y

et, h

is p

a:en

ts r

emai

ned

conc

erne

dab

out h

is la

ngua

ge, b

ehav

ior,

and

rela

tion-

saip

s w

ith o

iler

reop

le. A

t 2 y

eat s

of a

ge, h

e ne

ither

spo

ke n

or c

onsi

sten

tlyfo

llow

ed

I -

step

com

man

ds. H

e w

as a

:oile

r.H

e sh

owed

no

inte

rest

in p

layi

ng w

ithot

her

cL:I

dren

and

bar

ely

ackn

owle

dged

his

par

ents

.Il

e st

ill d

id n

ot li

ke to

be

held

. Ken

ny

exhi

bite

d no

war

mth

and

mai

ntai

ned

no e

yeco

ntac

t with

oth

ers.

He

had

man

y

stra

nie,

ritu

alis

tic b

ehav

iors

.Il

e sp

un a

roun

d, r

ocke

d, a

nd c

onst

antly

pla

yed

with

a

;rin

g. E

.:. V

. ydl

d fl

y in

to a

rag

e w

hen

the

furn

iture

was

mov

ed o

r w

hen

he e

ncou

n-

tere

d ne

w s

ituat

ions

.-

By

4'-a

ma

et a

ge. K

enny

had

dev

elop

ed s

ome

lang

uage

, but

it w

as v

ery

stra

nge.

lie h

ad a

n ex

tra:

:rdi

nary

mem

ory

for

num

bers

ari

d co

mm

erci

als.

He

wou

ld c

enst

antly

c,:.r

ry a

det

er.,;

eist

'oot

tle a

roun

d th

e ho

use

sing

ing

its a

dver

tisin

gjin

gle,

and

he

wou

ld

endi

essi

y re

peat

str

ings

of

num

bers

.H

o.ae

ver,

he

still

bas

ical

lyco

mm

unic

ated

with

r.)

one

. lie

cou

ki n

ot f

onow

2-s

tep

com

man

ds a

nd s

poke

in o

nly

1- o

r 2-

wor

d ph

rase

s.

ofte

n ti

ct, h

c ,,,

aint

ed to

wha

the

wan

ted.

rim

e, 7

sych

otog

ical

test

ing

was

per

form

ed.

Ken

ny's

IQ

was

37,

indi

cat-

ing

1,c

func

tione

d ar

ound

the

leve

l of

an l8

-mon

th-e

ld. H

owev

er, h

e co

uld

build

blo

ck

t.r.x

ers

and

s.lv

e p0

571e

5 at

a 4

-yea

r-ol

dle

vel.

Bec

ause

of

his

stra

nge

beha

vior

,w

ith-

ai:d

rea

ctIm

s uf

rag

e, h

e w

as r

efer

red

to a

child

psy

chia

tris

t. T

hese

sym

p-

;,,m

s, :c

ml)

ined

with

goo

d gr

oss

mot

or a

nd v

isua

l-pe

rcep

tual

ski

llsan

d se

vere

men

-

tal i

ctar

datio

n, lc

d to

a d

iagn

osis

of

autis

m. H

is p

aren

ts, i

n a

sens

e, w

ere

relie

ved;

they

had

a d

iano

sis,

som

e pl

ace

to s

:art

.

Eve

n m

ore

it:T

ort:i

nt, K

enny

was

enro

lled

in a

n in

terv

entio

n pr

ogra

m.

Ile

re-

ed th

e dr

ug h

alop

erid

ol to

dec

reas

ehi

s an

xiet

y. H

is r

eact

ions

of

rage

decr

ease

d.

c..tc

ted

a rp

ecia

l sch

ool p

rogr

am w

here

1.:-

--.1

age

and

othe

r re

ason

ing

skill

s w

ere

tau:

,lit a

t an

18-n

1,m

M-o

ld lt

vcl.

Beh

avio

r m

anag

emen

t tec

hniq

ues

wer

eus

ed to

hel

p

Kr

nny

ith n

,-N

soc

ial s

ituat

ions

and

to r

educ

ese

lf-s

timul

ator

y be

havi

or. A

t the

sam

e

tune

, K-i

my'

s pa

tent

s ie

ceiv

edco

unse

ling

;torn

a s

ocia

l vs

orke

rand

fol

low

ed th

roug

h

rn a

1 c

hasi

ut m

anag

emen

t pro

gram

sct u

p by

a b

ehav

imal

psy

chol

ogis

t.

(....

ears

of

age,

Ken

ny h

ad im

prov

edsu

bsta

nIl

y. I

le c

ould

now

for

m3-

wo1

d

sent

er:e

s, a

nd th

e am

omat

ic r

epet

ition

of w

ords

dec

reas

ed. I

lls b

ehav

ior

was

bette

r,

and

coul

I b

e km

:7;1

4 it}

ip n

ew s

ituat

ions

with

out d

iffi

culty

.

AU

TIS

M/

417

Ken

ny's

eve

ntua

l out

ctom

e is

stil

l unc

leaL

He

will

con

tinue

to g

ain

new

ski

lls.

but h

is c

ogni

tive

func

tion

will

like

ly r

emai

n in

the

rang

e of

men

tal r

etar

datio

n. I

t is

hope

d th

at h

e w

ill g

ain

incr

ease

d co

mm

unic

atio

n an

d so

cial

ski

lls th

at w

ill p

erm

ithi

m to

fun

ctio

n in

sup

port

ed e

mpl

oym

ent w

hen

he is

an

adul

t.

PRO

GN

OSI

S

Aut

istic

fea

ture

s ge

nera

lly b

ecom

.: le

ss p

rono

unce

d as

the

child

grow

s, a

nd s

tere

o-ty

pic

beha

vior

dec

reas

es. B

y ad

oles

cenc

e, th

e ch

ild's

fun

ctio

n w

ill p

rinc

ipal

ly d

epen

don

his

or

her

inte

llige

nce

and

spee

ch s

kills

Onl

y ab

out o

ne-

half

of

child

ren

with

.au

tism

gai

n so

cial

ly u

sefu

l spe

ech,

usu

ally

by

5ye

ars

of a

ge (

Rut

ter,

198

5a).

The

child

with

aut

ism

and

mod

erat

e-to

-sev

ere

men

tal r

etar

datio

n w

ill f

unct

ion

ina

man

-ne

r si

mila

r to

oth

er c

hild

ren

with

men

tal r

etar

datio

n, a

lthou

gh h

e or

she

will

hav

epo

orer

lang

uage

ski

lls, p

ossi

bly

bette

r pr

oble

m-s

olvi

ng a

bilit

ies,

and

a d

ecre

ased

in-

tcrc

st in

soc

ial i

nter

actio

ns. E

ven

amon

g hi

gher

fun

ctio

ning

indi

vidu

als

with

aut

ism

,ab

norm

aliti

es o

f ve

rbal

exp

ress

ion,

con

cret

e th

ough

t pro

cess

es, s

ocia

l aw

kwar

dnes

s.an

d st

ereo

type

d an

d in

appr

opri

ate

soci

al b

ehav

iors

tend

to p

ersi

st(W

ing,

198

8).

Ove

rall,

abo

ut 1

5% o

f ch

ildre

n w

ith a

utis

m h

ave

a go

od o

utco

me,

15%

a f

air

out-

com

e, a

nd 7

0% a

poo

r ou

tcom

:in

term

s of

fun

ctio

ning

inde

pend

ently

in s

ocie

ty a

san

adu

lt. T

hc m

ajor

ity li

ve a

t hom

e or

in s

uper

vise

d liv

ing

situ

atio

ns (

Rum

sey.

Rap

opor

t, &

Sce

ery,

198

5). M

ost i

ndiv

idua

ls w

ith a

utis

m a

rc in

depe

nden

t in

self

-ca

re s

kills

and

can

par

ticip

ate

in a

ctiv

ities

of

daily

livi

ng (

Win

g, 1

985)

. Som

eyo

ung

a,'

can

enga

ge in

sup

port

ed e

mpl

oym

ent,

espe

cial

ly in

jobs

that

req

uire

the

usc

ofth

eir

visu

al-m

otor

ski

lls. T

hose

with

nor

mal

inte

llige

nce

can

ofte

n liv

e an

d w

ork

inde

pend

ently

.

SUM

MA

RY

Aut

ism

app

ears

to b

e a

dist

inct

syn

drom

e. I

tspr

inci

pal c

har

eris

tics

are

a gl

obal

lang

uage

dis

orde

r, a

bnor

mal

beh

avio

r pa

ttern

s, s

ocia

l iso

latio

n,-d

, usu

ally

, men

tal

reta

rdat

ion.

Its

cau

ses

are

man

y. D

iffe

rent

iatio

n fr

om o

ther

dis

abili

ties,

suc

h as

men

-ta

l ret

arda

tion,

psy

chia

tric

illn

ess,

sens

ory

impa

irm

ents

, and

pro

gres

sive

neu

rolo

gi-

cal d

isor

ders

, is

esse

ntia

l for

prop

er th

erap

y to

he

poss

ible

. The

rapy

con

sist

s of

an

inte

rdis

cipl

inar

y ap

proa

ch th

at in

clud

es p

sych

iatr

y,sp

eech

-lan

guag

e pa

thol

ogy,

be-

havi

oral

psy

chol

ogy,

and

soc

ial w

ork.

At t

his

poin

t, th

e va

lue

of m

edic

atio

n is

unc

er-

tain

. Iad

oles

cent

s an

d ad

ults

, the

biz

arre

beh

avio

r is

less

aPpa

rent

, but

pro

gnos

is is

gene

rally

poo

r. T

he c

hild

ren

with

the

best

hop

e fo

r th

e fu

ture

arc

thos

e w

ith th

e hi

gher

IQ s

core

s.

RE

FF.R

EN

CE

S

Ara

erka

n Ps

ychi

atri

c ;

c.,a

ciat

ion.

(19

87).

Dia

gnos

tic a

nd s

tatis

tical

man

ual o

f men

tal d

isor

.de

r: (

DS

M.II

I-R

)(3

id e

d ).

Was

hing

ton,

DC

: Aut

hor.

1 0

3

INSTITUTE *forthe STUDY of

DEVELOPMENTAL_-DISABILITIES

,TheUnivefsity A. liated program of Indiana_

. .

_

FACTS ABOUT AUTISM

4

ndiana-ResotirceCe.nter for Autisth

Indiana University

--'..f This ocument was :develop6d and. disseminated by -the Indiana ..., ..

.

-;_q:Zesoufce/Center. for ALtiSM "(IRCA).loCated'at the IiiStittite for 'the:.::-::::..'::Study, ofDVelopment41 Disabilities. (ISDD) at Indiana Univeri.itSi,

iilocirriin.gton'; -The ISDD .i s-ihe- University- Affiliated.Prograth;of, . t

'-. . ! - .1 n d i a r 1 a . , .....

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..,. . r "r-:-.--; .: JRCA is. one .. of. fdtir resource centers .supp Drteci.,1py, (the I.SDD.. - ..

:7:T.- IRCA's -' c6nter operationS .s.are -:.designed 16. -complement "-tle -- .., . ." . s .-

insti.tuté:s three core program center attivities. . The .-ISDD. is-.:: dediCated _to' the'promotion and maintenance .of a searriles.s'fsis.tern :. ...

._. _

,-:-.-.=- .of inclusionary seryi_ces,foi.individuals.With .c.lisabil'ities acrois the_ ..

._ .

.,....._ .. ... . .

.:. .. . .. ,

:......:: life spaq-.. ..--Institute_ activities t.include interdisciplinary training, .-.. - ... , ,i:-.5,'...tc bhnical aSSistarce . referen:ce:-_inforrnation.,-. and applied 'research. -., .. ,.. ..l . '. - 7

. . ..., ,-.. If: you arb-interested in obtainin.g...further infortnation-ori.the' ISDD,

I . Cont,dct: .. . ". '.,

. . .. . . 1,. 1... ,---

..--:.-. -Coordinator --s - ,3-..; ..._ ._ ,,.. .. _. . --,- .- -...,:-. .--:,,... -.. Office-;of-,lifforrriai-on'.add.:, ,.. .,:-..... .., . ...

, ..

. -15blic RelaliOns -,., ' -... _.':.,..

.:of-,-: .- 1,. 2 , . .-- . . : , .

. ( , "... .

. :285.3-East Tenth. Str&e,et:_:1310-ornington, Indlana; 47408-2601

.1::' (842:) 855-6508'. -;(814 85-:9160

-. ;,

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I

-',

-EfEST-COPY AVAILABLE'I 00 -

FACTS ABOUT AUTISM

by

Marci WheelerSuzie Rimstidt

Susan GrayValerie De Palma

Illustrated byAbram Boulding

Indiana Resource Center for AutismInstitute for the Study of Developmental Disabilities

The University Affiliated Program of IndianaIndiana University

Bloomington, Indiana 47408-2601

c. 1991

,'

r77-

-

SG.

1,

.1--

)

,W

HA

T I

S A

UT

ISM

?A

utis

m is

a d

iagn

ostic

labe

l for

a li

felo

ng d

evel

opm

enta

ldi

sabi

lity

caus

ed b

y a

brai

n dy

sfun

ctio

n.

*It

occ

urs

in a

ppro

xim

atel

y 1

in 1

000

peop

le o

f al

l rac

es,

cultu

res,

and

edu

catio

nal b

ackg

roun

ds.

*T

he d

isor

der

show

s its

elf

in in

fanc

y or

ear

ly c

hNdh

ood.

*It

is a

ccom

pani

ed b

y m

enta

l ret

arda

tion

abou

t 80%

of

the

time.

*It

can

als

o oc

cur

with

oth

er c

ondi

tions

suc

h as

dea

fnes

s,D

own

synd

rom

e, F

ragi

le X

syn

drom

e, a

nd e

pile

psy.

Abo

ut f

our

out o

f fi

ve p

eopl

e w

ith a

utis

m a

re m

ale.

Peop

le w

ith a

utis

m v

ary

wid

ely

in a

bilit

ies,

inte

llige

nce

lev-

els,

and

beh

avio

ral c

hara

cter

istic

s. A

cros

s th

e sp

ectr

um o

f th

ose

diag

nose

d w

ith a

utis

m, t

he c

omm

on c

ompo

nent

s ar

e:

*Si

gnif

ican

t im

pair

men

ts in

lang

uage

and

com

mun

icat

ion

abili

ties,

*Si

gnif

ican

t im

pair

men

ts in

soc

ial s

kills

, and

*A

lim

ited

num

ber

of a

ctiv

ities

and

inte

rest

s.

WH

AT

CA

USE

S A

UT

ISM

?

The

re is

no

sing

le k

now

n ca

use

for

autis

m.E

xper

ts d

o no

tkn

ow e

xact

ly w

hat i

s di

ffer

ent a

bout

the

stru

ctur

e,fu

nctio

n, o

rch

emis

try

of th

e br

ain

in a

n in

divi

dual

with

aut

ism

.

Res

earc

h is

sho

win

g th

at th

e br

ain

cells

of

peop

le w

ithau

tism

wor

k to

geth

er in

an

unus

ual m

anne

r.

The

che

mic

als

whi

ch c

arry

mes

sage

s be

twee

nbr

ain

cells

may

als

o be

too

high

or

too

low

.

App

aren

tly, p

eopl

e w

ith a

utis

m d

o no

t per

ceiv

e or

proc

ess

inco

min

g se

nsor

y in

form

atio

n(h

eari

ng, s

ight

,to

uch,

sm

ell,

and

mov

emen

t) in

the

sam

e w

ay a

s ot

her

peop

le.

NIc

nIal

Ite

lnrd

alIo

n In

rco

ple

Aul

lsm

Peop

le w

ho h

ave

autis

m m

ay a

lso

have

othe

r di

sord

ers

such

as. .

.

men

tal r

etar

datio

n,se

izur

es,

gene

tic d

isea

ses,

cere

bral

pal

sy, o

rbr

ain

mal

form

atio

ns.

Aut

ism

, how

ever

, is

a se

para

te d

isor

der

asid

e fr

om a

nyot

her

prob

lem

s.

*T

here

is n

o de

fini

te m

edic

al te

st w

hich

can

diag

nose

autis

m.

*G

enet

ic f

acto

rs a

re c

onsi

dere

d to

be

one

poss

ible

cont

rib-

utin

g ca

use

of a

utis

m.

In s

ome

fam

ilies

ther

e se

ems

to b

e a

patte

rnof

' aut

ism

and/

or a

ssoc

iate

d pr

oble

ms

of le

arni

ng o

r la

ngua

ge.

Oth

er c

ausa

l fac

tors

bei

ng r

esea

rche

d in

clud

evi

ral i

nfec

-

tions

dur

ing

preg

nanc

y, m

etab

olic

dis

orde

rs,

and

birt

h

com

plic

atio

ns.

11 0

HO

W I

S A

UT

ISM

DIA

GN

OSE

D?

The

dia

gnos

is o

f au

tism

is b

est m

ade

on in

form

atio

n co

m-

plie

d by

var

ious

mem

bers

of

an in

terd

isci

plin

ary

asse

men

tte

am. T

eam

s us

ually

con

sist

of

a ps

ycho

logi

st, a

teac

her,

asp

eech

/lang

uage

pat

holo

gist

, an0

a s

ocia

l wor

ker.

Oth

erpr

ofes

sion

als

such

as

a ph

ysic

al o

r oc

cupa

tiona

l the

rapi

st,

doct

or, o

r nu

rse

may

be

impo

rtan

t add

ition

s to

the

team

.

It is

impo

rtan

t tha

t t:le

team

gat

her

deve

lopm

enta

l and

beha

vior

al in

form

atio

n fr

nm th

e fa

mily

and

sch

ool/p

rogr

am.

A m

arke

dly

unev

en d

evel

opm

enta

l pat

tern

ale

rts

the

team

toth

e. p

ossi

bilit

y of

aut

ism

. An

earl

y hi

stor

y of

lang

uage

del

ayan

d pr

oble

ms

in th

e de

velo

pmen

t of

toy

play

, pla

y w

ith p

eers

,pr

eten

d pl

ay, a

nd o

dd u

se o

f e)

- co

ntac

t in

inte

ract

ions

with

adul

ts a

rt o

ther

pos

sibl

e in

dica

tors

.A

noth

er c

hara

cter

istic

oft

en s

een

in a

utis

m is

abn

orm

alre

actio

ns to

sen

sory

stim

uli.

For

exam

ple,

peo

ple

with

aut

ism

may

mou

th o

r sm

ell i

tem

s in

pre

fere

nce

to lo

okin

g at

them

or

may

bec

ome

very

ups

et w

hen

they

hea

r a

part

icul

ar n

oise

or

see

a pa

rtic

ular

Obj

ect.

cts

.1.

Sam

ple

Dev

elop

men

tal P

rofi

le o

f a

Pers

on w

ho is

Mor

e A

ble

and

has

Aut

ism

In m

ost i

ndiv

idua

ls w

ith a

utis

m th

ese

prob

lem

s ar

e m

ost

appa

rent

bet

wee

n ag

es 3

-6, b

ut c

ontin

ue th

roug

h th

e sc

liool

year

s an

d in

to a

dulth

ood.

Indi

vidu

als

with

aut

ism

who

are

mor

e ab

le (

thos

e w

ith I

Qs

over

70)

may

see

m to

hav

e hy

pera

ctiv

ity o

r a

le.ir

ning

dis

-ab

ility

. But

they

als

o ha

ve s

igni

fica

nt s

ocia

l and

com

mun

ica-

tion

prob

lem

s w

hich

con

tinue

thro

ugho

ut th

eir

lives

.

1

WH

AT

CA

N H

EL

P A

CH

ILD

WIT

HA

UT

ISM

?

Chi

ldre

n w

ith a

utis

m n

eed

to b

e id

entif

ied

earl

y. F

amili

esan

d te

ache

rs c

an th

en c

omm

unic

ate

and

teac

h m

ore

effe

ctiv

e-ly

in w

ays

that

the

child

can

und

erst

and,

bef

ore

the

child

,fa

mily

, and

sch

ool s

taff

bec

ome

very

fru

stra

ted.

Chi

ldre

n w

ith a

utis

m n

eed

an in

divi

dual

ized

lear

ning

pro

-gr

am. T

he e

mph

asis

nee

ds to

be

on h

elpi

ng th

e ch

ild le

arn

way

s to

com

mun

icat

e an

d on

arr

angi

ng th

e en

viro

nmen

t so

that

it is

mor

e co

nsis

tent

and

pre

dict

able

.

Chi

ldre

n w

ith a

utis

m n

eed

chan

ces

for

succ

essf

ul e

xper

ien-

ces

incl

udin

g re

info

rcem

ent f

or s

mal

l ste

ps f

orw

ard.

The

y ne

ed le

arni

ng a

ctiv

ities

whi

ch in

corp

orat

e th

eir

stre

ngth

s an

d in

tere

sts.

The

lear

ning

act

iviti

es n

eed

to b

efu

nctio

nal a

nd h

ave

a cl

ear

purp

ose

that

can

eve

ntua

lly b

eun

ders

tood

by

the

child

with

alu

tism

.

The

y ne

ed p

lann

ed in

tegr

atio

n w

ith p

eers

who

are

fol

low

-in

g th

e ty

pica

l dev

elop

men

tal p

atte

rn.

Mos

t chi

ldre

n w

ith a

utis

m le

arn

best

thro

ugh

visu

al m

eans

.T

each

ing

with

obj

ects

and

pic

ture

s, a

nd p

rovi

ding

pee

rs to

imita

te h

elps

them

lear

n.

The

y al

so le

arn

best

thro

ugh

part

icip

atio

n in

rea

l situ

a-tio

ns, s

ince

ski

lls ta

ught

in is

olat

ion

may

not

be

rem

embe

red

whe

n th

e pe

rson

with

aut

ism

trie

s to

use

them

in th

e re

al w

orld

..

Som

e ch

ildre

n ca

n be

nefi

t fro

m m

edic

atio

n if

it is

giV

en f

ora

spec

ific

pro

blem

suc

h as

anx

iety

, hyp

erac

tivity

, dep

ress

ion,

or o

thef

inte

rfer

ing

beha

vior

s. F

amily

and

doc

tor

can

wor

kto

geth

er to

ass

ess

the

child

's n

eed

for

med

icat

ion.

How

ever

,th

ere

is n

o m

edic

atio

n th

at c

ures

aut

ism

.

WH

AT

CA

N H

EL

P T

HE

FAM

ILY

OF

APE

RSO

N W

ITH

AU

TIS

M?

The

fam

ily w

ill n

eed

a co

mpr

ehen

sive

,co

ordi

nate

d, a

ndfl

exi',

)le

syst

em o

f fa

mily

sup

port

s th

roug

hout

the

lifet

ime

of

pers

on w

ith a

utis

m.

The

fam

ily n

eeds

info

rmat

ion

and

know

ledg

e ab

out

.aut

ism

. Hel

p an

d un

ders

tand

ing

of e

xten

ded

fam

ily m

embe

rsan

d f;

iend

s w

ill b

e an

impo

rtan

t sup

port

toth

e fa

mily

.

An

acce

ptir

.: an

d ed

ucat

ed c

omm

unity

as

wel

l as

pare

nts:

bIln

; sup

port

gro

ups

may

be

help

ful t

ofa

mili

es.

Th

e. f

amily

mig

ht n

eed

help

in s

truc

turi

ng d

aily

livin

g an

dse

lf c

are

skill

s, s

uch

as b

athi

ng, d

ress

ing,

eat

ing,

ani s

leep

ing.

The

y m

ight

nee

d he

lp in

pla

nnin

gan

dth

roug

h su

cces

sful

com

mun

ity a

nd f

amily

outin

gs.

Tbe

fam

ily o

ften

fee

ls m

ore

succ

essf

ul if

they

can

lear

nbe

havi

oral

str

ateg

ies

for

thei

r ch

ild w

ith a

utis

mH

caus

e it

quic

kly

beco

mes

app

aren

t tha

t tra

ditio

nald

isci

pli-

ry te

chni

ques

are

not

succ

essf

ul w

ith th

ese

child

ren.

Fam

ilies

may

nee

d a

coor

dina

tor/

adv

ocat

e to

hel

pth

em

aca.

ss th

e be

st s

ervi

ces

in s

choo

ls a

nd o

ther

com

mun

ityfa

cilit

ies.

Thi

s pe

rson

mig

ht b

e a

case

man

ager

from

a s

tate

iiir.

:11:

2y, a

soc

ial w

orke

r at

the

agen

cy w

here

the

pers

on is

e .1

c611

cd in

a p

rogr

ain,

an

advo

cate

fro

m a

noth

er s

ervi

cebw

ram

, or

a fr

iend

.

1 - '

I

Unf

ortu

nate

ly, t

here

are

pre

sent

ly f

ewid

entif

iabl

e re

sour

-

ces

to h

elp

fam

ilies

obta

in th

e ne

eded

info

rmat

ion

and

sup-

port

at h

ome.

Too

muc

hde

pend

s on

the

reso

urce

fuln

ess

of

each

fam

ily.

Prof

essi

onal

sup

port

s m

ay in

clud

e, b

ut a

reno

t lim

ited

to:

Res

pite

in o

r ou

t of

the

hom

e.T

his

help

sho

uld

bepr

ovid

ed b

y a

trai

ned

and

know

ledg

eabl

e pe

rson

who

can

baby

-sit

or c

anhe

lp im

plem

ent a

pro

gram

to te

ach

the

indi

vidu

al a

spe

cifi

c sk

ill o

rac

tivity

.

*C

risi

s in

terv

entio

n.

*B

ehav

iora

l, sp

eech

, rec

reat

iona

l,oc

cupa

tiona

l, or

othe

r th

erap

ies.

1

-%

_'": -.

/

-Nils

]: H

APP

EN

S T

O A

CH

ILD

WIT

HA

ITFI

SM I

N T

HE

PU

BL

IC S

CH

OO

LS?

Onc

e th

e di

agno

sis

of a

utis

m h

as b

een

mad

e, a

utis

msh

:luld

be

liste

d on

the

Indi

vidu

aliz

ed E

duca

tion

Plan

(IE

P).

From

the

child

's f

irst

yea

rs in

sch

ool,

long

term

pla

nnin

g to

prom

ote

inde

pend

ent f

unct

ioni

ng s

houl

d be

con

side

red

whe

nIE

P go

als.

A k

;1.:m

ledg

eabl

e an

d ca

ring

adv

ocat

e fo

r th

e st

uden

t will

cont

riH

tt: t

owar

ds a

suc

cess

ful e

xper

ienc

e in

the

scho

ol s

ys-

tem

.

,

A.t

%,.1

ut

.-

a

Plac

emen

t or

assi

gnm

ent t

o a

spec

ific

pro

gram

or

com

-bi

natio

n of

pro

gram

s m

ust b

e m

ade

on th

e ba

sis

ofth

e in

-di

vidu

al s

tude

nt's

str

engt

hs a

nd n

eeds

.C

lass

pla

cem

ent c

ould

ran

ge f

rom

reg

ular

edu

catio

n fu

llor

par

ttim

e w

ith s

uppo

rts

to p

rogr

ams

for

stud

ents

with

oth

erty

pes

of h

andi

capp

ing

cond

ition

s, m

ild o

r se

vere

.A

com

bina

tion

of p

lace

men

ts m

ay b

e us

ed if

tflis

bes

tm

eets

the

stud

ent's

nee

ds, a

gain

dep

endi

ng o

nth

e st

uden

t'sIn

divi

dual

Edu

catio

nal P

lan.

For

mos

t stU

dent

s w

ith a

utis

m, s

peec

h/ la

ngua

ge th

erap

yw

ill b

e re

quir

ed.

Oft

en th

e cu

rric

ulum

will

be

cent

ered

on

func

tiona

l ski

lls,

skill

s th

at w

ill e

nabl

e th

e st

uden

t to

live

as c

ompe

tent

ly a

spo

ssib

le a

s an

adu

lt. T

hese

fun

ctio

nal s

kills

may

be

part

of

aco

mm

unity

-bas

ed p

rogr

am to

lear

n jo

b, s

ocia

l, an

d le

isur

esk

ills.

Stu

dent

s ca

n pr

actic

e so

cial

and

lang

uage

ski

lls a

s w

ell

as le

arn

by d

oing

whi

le p

artic

ipat

ing

in a

ctua

l com

mun

ityse

tting

s.

A V

ocat

iona

l Reh

abili

tatio

n C

ouns

elor

mus

t bec

ome

in-

volv

ed in

the

stud

ent's

edu

catio

nal p

lann

ing

in th

e la

st f

our

year

s of

sch

ool.

Spec

ial e

duca

tion

dist

rict

s m

ay e

lect

to p

erm

it st

uden

ts to

cont

inue

thei

r ed

ucat

ion

until

they

are

21

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12

BEST COPY AVAILABLE

The University of Minnesota'sInstitute for Disabilities Studies,directed by Travis Thompson,Ph.D., was established in 1987 toconduct basic and appliedscientific research on preventingand intervening in developmentaldisabilities, and to designtreatment and educationalmethods for people withdisabilities. The Institute'sresearch focuses on theprevention of disabilities arisingfrom poverty; on behavioral andemotional problems associatedwith disabilities; and ondisabilities that occur later in life.Because no single field of studycan solve the complex problems ofdevelopmental disabilities, theInstitute for Disabilities Studies isdedicated to interdisciplinarycollaboration, making it a uniqueprogram within the University ofMinnesota and across the country.

©1990Institute for Disabilities Studies,University of Minnesota

Written by Bruce L. Bakke, Ph.D.,Institute for Disabilities Studies,University of Minnesota.Designed by Anna Fellegy;cover by Geri Thompson.

Financial support provided byThe Minneapolis Foundation.

The following contents do notnecessarily represent theposit-ions and policies oi eachorganization mentionedin this brochure.

124

One in five people with mental retardation injures her or himself,causing pain and suffering to themselves, their families and othersaround them. This guide for parents, teac7 .ers and other caregiversof people who have developmental disabilities describes the morecommon types of self-injury and discusses methods for identifyingcauses. Interventions are discussed and infoi mation is providedconcerning sources for further assistance.

1

CHARACTERISTICS OF SELF-INJURY

What is self-injurious behavior and how common is it?

Self-injurious behavior (SIB) is repe titive behavior that causesphysical harm. Usually the behavior takes a very similarform every time it occurs -- for example, one child maybruisethe side of her head by hitting herself with the knuckles of onehand. Another may repeatedly bite one place on his rightwrist. SIB is different from suicidal behavior and suicidalgestures, and is seen almost exclusively in people with mentalretardation and other developmental disabilities. In mostinstances, self-injury can be successfully treated, especiallyby intervening early in the development of the problem.While self-injury is rarely life-threatening, without treatmentit can sometimes worsen to the point of causing permanentdamage. A few people with severe self-injury blind them-selves or suffer hearing loss, destroy parts of their bodies(e.g., portions of fingers or lips), produce concussions, orcause repeated damage which leads to lingering infections.

Do all children who bump their heads or hit themselvesdevelop the problem of self-injury?

No. About 17% of infants without a disability periodicallyhit their heads against their cribs or occasionally hit theirhead or face with their hand when they are tired orfrustrated.Nearly all non-disabled infants stop hurting themselves bythe time they are two years old. But as many as one in five

children with mental retardation continue hurting them-selves periodically for months and years,sometimes severely.

126

My four year old son slaps his face repeatedly, but he doesn'tleave any bruises, just reddened skin. Is this a problem?

Face slapping or any other behavior that is performed oftenenough or intensely enough to cause reddening or breakingof the skin, bruises, bleeding, or other signs of tissue damageshould be discussed with a professional experienced withself-injurious behavior in people with developmental dis-abilities. Sources of help include special education teachers,pediatricians, behavior analysts, social workers, child psy-chiatrists and psychologists, and pediatric neurologists.

Do children with some particular disabilities have more prob-lems with self-injury than children with other disabilities?

Children with several uncommon disabling conditions, suchas Autism, Cornelia de Lange syndrome, Fragile X syn-drome, Lesch-Nyhan syndrome, and Rett syndrome haveproblems with self-injury more often than children withother developmental disabilities. However, since as many as20% of children with disabilities display self-injury at sometime in their lives, the problem extends well beyond theserarer disabilities. People wishing further information aboutspecific disabilities often associated with self-injury shouldcontact the resources listed at the end of this brochure.

CAUSES OF SELF-INJURY

What is known about the causes of the problem?

Thirty years ago, some writers speculated that children whohurt themselves were born the same as other children butthat their self-injury resulted from a cold or detached style ofmothering. There is no evidence to support this theory.

Today, most experts realize that self-injury usually has more

than one cause. There may often be an underlying biologicaltendency for a child to self injure. How often, under what

circumstances and how intensely the child self-injures often

depends on learning experiences, which can cause the self-

injury to decrease or sometimes grow much worse.

. Can medical problems cause self-injurious behavior?

Several medical conditions can lead to self-injury. Children

with ear infections, for example, may try to reduce their dis-

comfort by hitting or slapping at their ears. Similarly, they

may repeatedly scratch at an area of itching skin, and con-

tinue to scratch when the skin begins to heal. Once the

earache or skin irritation clears up, the self-injury usually

stops. If the self-injury continues after the medical problem

is over, another cause for the behavior should be considered.

Can dietary factors such as sugar, artificial coloring, or other

food additives cause self-injury?

There is little carefully done research on the effects of diet or

food ingredients on self-injury, or on megavitamin therapy

as a treatment for self-injury The studies on food and hyper-

activity (extreme restlessness and overactivity) in children

show no consistent effect of diet on behavior. For most

children, activity level does not appear to be changed by the

items in a normal diet, but a small number of children may be

affected by diet.

I often see my child hurting himself when he is angry. For

example, he bumps his head when it is time to put on his

shoes. Why does he do this?

Children sometimes learn to avoid or delay doing things tha t

they don't i ke by hurting themselves. Perhaps the youngster

finds it difficult to put on his shoes, or does not enjoy the

activity that will follow once he is dressed. Maybe he just

nrrqen; to continue with whatever he is doina. Because it is 1 26

difficult for adults to continue to request something from achild who is engaged in self-injury, some children learn tocontrol what happens in their lives by hurting themselves.Self-injury is especially likely to be learned if the child cannotspeak and has no other effective way to communicate.

My child speaks only a few words. Is it possible that she istrying to tell us something by hurting herself?

Self-injury can be an effective method for getting attentionfrom adults, because the parent's natural response is to im-mediately go to the child to see what is wrong and to try tostop the self-injury. Sometimes it is necessary for adults tophysically prevent the child from injuring him or herself.Children who have difficulty communicating can learn thatattention can be gotten at any time by hurting themselves.Beyond simply gaining attention, children can also learn tohurt themselves to obtain other things they need or want.These may include preferred foods, favored activities, orbeing left alone. Self-injury is disturbing and even alarmingto adults, and they will do whatever they can to stop it.Adults often offer various things to the child until s/he stopsself-injuring. Unfortunately, the child may self-injure for adifferent reason the next time, and the process of adultguessing will be repeated again and again, unless a moresatisfactory form of communication is developed.

Even though our child communicates very well, he threatens toscratch his face or hurts himself in other ways when he wantssomething he shouldn't have. Since he tells us exactly what hewants, communication can't be the reason for his self-injury.

Self-injury can still be a powerful and quick way for a childto get what he wants, at least part of the time. Seeing childrendeliberately hurt themselves is extremely upsetting for par-ents and others. It is very difficult not to give in at leastoccasionally, and provide what the child wants to stop theself-injury. Although it is not intended, this rewards thechild's self-injury and can cause the self-injury to continue.

'f",

So far, none of this seems to fit my child. She has Downsyndrome, and had aComplete medical evaluation showingno medical problems that could account for her self-injury.It doesn't seem to be an attempt to communicate or to getattention. In fact, she likes to be alone. She rocks for longperiods of time. When she rocks, she bumps against the walland has caused a bruised spot that seems never to heal.

Some children perform a repetitive movement that results inskin, muscle, or even bone damage because it is repeatedover and over again. The stimulation produced by therepeated movement may be pleasant to her, much as rockingis enjoyed by a baby. The injury is a by-product of the way themovement is performed (in this case, by constantly bumpingagainst the wall). Similar problems are seen in children whohave impaired vision. A child with a visual handicap mightlearn to press a finger into the eye because of the flashes oflight this mechanical stimulation produces through the opticnerve. Obviously, this can cause physical damage to the eye.

I can see that repeating the same movement can cause injuryas an accidental by-product of the movement. However, whenmy son bangs his head, it seems that his only purpose is todamage himself.

A different kind of self-stimulation can result from self-injury: Sufficient pain causes the release of "endogenousopioids," which are natural chemicals in our bodies thatprotect us from feeling intense pain. Endogenous opioidscan also produce feelings of euphoria, such as the so-called"runner's high" that some people experience when runningmarathons. Some people may self-injure in order to bestimulated by these pleasant effects of endogenous opioids.Research on endogenous opioids as a cause of self-injuriousbehavior is just beginning, and may lead to new treatmentsfor some self-injury.

TREATMENTS FOR SELF-1NJURY

With so many different causes, how is self-injury treated?

The first step is to try to discover the causes of the child's self-injurious behavior. It is important to identify any medicalproblems that might be responsible. This requires a thoroughexamina tion by a physician familiar with children with mentalretardation. Other 6auses for self-injury can be identified byexamining the circumstances in which the child self-injures.When the behavior occurs primarily in adult company butrarely when the child is alone, it is often directed at gettingattention or other things that the child needs or wants. Self-

injury that occurs when the child is asked to do something orduring activities the child dislikes may be attempts to avoidunpleasant activities. The child who is just as likely to self-injure when alone as when he or she is with adults may beshowing behavior that is a form of self-stimulation. Each ofthese causes suggests a different avenue of treatment to aprofessional experienced in treating self-injury.

Once causes are identified, what treatments are available?

A range of treatments are available, including providingmore rewarding activities at which the youngster can easilysucceed, providing communication training, decreasing thedemands made on a child, and drug treatment. A positiveenvironment with appropriate training, social, recreational,and other experiences must provide the foundation for anytreatment for. self-injury. That environment must provideactivities with the correct amount of challenge: Tasks shouldbe easy enough for the child to be successful. Assessing theenvironment of a self-injurious child, and selection and useof effective treatments, usually require the assistance of adevelopmental disabilities professional. Treatments shouldbe matched to the cause identified. For example, childrenwho learn to hurt lhemsdves to gain a ttention frori parents,teachers or other people caring fc them can usually be

131

taught to seek that attention in healthier ways, making itunnecessary for them to hurt themselves. Teaching childrento develop other communication methods, or to use otherconstructive ways of gaining adult attention is often enoughto reduce self-injury. In other circumstances, self-injury isthought to be caused mainly by a biological condition, suchas a brain chemical imbalance. In such instances, it may benecessary to treat the underlying problems with a drugintended to correct the imbalance.

My child takes medication for self-injury. She still hurts her-self, but not as often.

Medications are currently one of the most common forms oftreatment for self-injury. The medications usually tried for-self-injury are called neuroleptics, which are the same typesof drugs used for treating some major mental illnesses. Theseand other drugs can be helpful for certain conditions, how-ever they are rarely used alone except when the personclearly has mental illness as well as mental retardation. Adisadvantage of some drug treatments is that they can haveboth immediate and long-term unwanted side effects, someof which can be very serious. Treatment with medicationalways requires consultation with a physician.

Some friends have suggested that I spank my daughterfor self-injury. Is this a good idea?

No. Posi tive, non-aversive interventions are usually sufficient

to reduce or eliminate self-injurious behavior, and parentsare urged not to use spanking, slapping, or scolding tocontrol self-injury. Punishment procedures by themselvesare not an appropriate treatment. However, as one part of acarefully designed overall treatment program in closelysupervised clinical settings, various response suppressionprocedures have been reported to be effective under somecircumstances. Such procedures are controversial. Parentswishing further information on this topic are encouraged tocontact the following resources:

1 az 7

1) The position statement on the use of aversive anddeprivation procedures of the Association for RetardedCitizens Minnesota (ARC MN). This statement is availableby calling ARC MN at (800) 582-5256 or (612) 827-5641, or

from the Institute for Disabilities Studies, (612) 627-4537.

Addresses for both organizations are listed among the

resources at the end of this brochure.

2) The 1939 National Institutes of Health ConsensusDevelopment Conference Statement, Treatment of Destructive

Behaviors in Persons with Developmental Disabilities. Single

copies can be obtained from the Director of Communications,

Office of Medical Applications of Research, Na tional Insti tutes

of Health, Building 1, Room 260, Bethesda, MD 20892.

When my child is busy, there seems to be less self-injury.

Whether at home or at school, keeping a child occupied withenjoyable activities at which they can easily succeed, andproviding frequent adult attention will often reduce self-

injury. The key to reducing self-injury by providing theseactivities is to pro.note the child's active responding andlearning of new skills. It appears that it is most helpful to

have the child participate in doing things, rather than doing

things to or for the child.

D LI

133

FOR MORE INFORMATION ABOUT SELF-INJURY

This brochure was produced by the Institute for Disabilities Studies,a program of the UniVersity of Minneso ta, and was writtenby BruceL. Bakke, Ph.D. Support was provided by The MinneapolisFoundation. This material provides an introduction to the problemof self-injuriousbehavior in people with developmental d isabilities.Further information can be obtained by contacting the Institute orthe people and organizations listed below:

Institute for Disabilities StudiesTechnical Assistance ProgramUniversity of Minnesota2221 Uni ersity Avenue Southeast, Suite 145Minneapolis, MN 55414(612) 627-4537, or FAX (612) 627-4522

Association for Retarded Citizeng Minnesota (ARC MN)3225 Lyndale Avenue SouthMinneapolis, MN 55408(612) 827-5641, or toll free (800) 582-5256

Nonaversive Behavior Management InformationSr Referral Service

National Research (g.t Training Center on Communi ty-Referenced, Nonaversive Behavior Management forStudents with Severe Disabilities

San Francisco State UniversitySan Francisco, CA 94132Toll-free (800) 451-0608 (9 AM to 4 PM Pacific Time)

Michael F. Cataldo, Ph.D.Director of PsychologyThe Kennedy InstituteThe Johns Hopkins University707 North BroadwayBaltimore, MD 21205(301) 550-9455

9

134

For information on a specific syndrome, please contact:

Twin Cities Society for Children & Adults with Autism (TSAC)

253 East Fourth StreetSt. Paul, MN 55101

(612) 228-9074

Cornelia de Lange Syndrome Foundation60 Dyer AvenueCollensville, CT 06022

(203) 693-0159, or toll free (800) 223-8355

Lesch-Nyhan SyndromeWilliam L. Nyhan, M.D., Ph.D.

Professor of PediatricsSchool of MedicineUniversity of California San DiegoSan Diego, CA 92093-0609

(619) 534-4150

National Fragile X Foundation1441 York Street, Suite 215Denver, CO 80206(303) 333-6155, or toll free (800) 688-8765

International Rett Syndrome Association8511 Rose Marie DriveFort Washington, MD 20744

(301) 248-7031

Tourette Syndrome Association42 - 40 Bell BoulevardBayside, NY 11361,(718) 224-2999, or toll free (800) 237-0717

For general information about disabilities and caregiving:

PACER Center4826 Chicago Avenue SouthMinneapolis, MN 55417-1055(612) 827-2966, or FAX (612) 827-3065

DODi 35

Early Childhood Autism: Changing Perspectives

Sam B. MorganDepartment of PsychologyMemphis State University

Memphis, Tennessee

This article reviews current concepts and research findings concerning earlychildhood autism with an emphasis on recent changes in perspectives on thedisorder. Autism is viewed as a pervasive developmental disorder with cognitiveimpairment as a central feature. The evolution of the current definition of autismis traced with reference to research findings that prompted revisions of theoriginal definition. Evidence is summarized that demonstrates long-term cognitivedysfunction and supports a biogenic rather than psychogenic view of autism.Current psychological, educational, and biological interventions are evaluated.Available information on long-range adjustment in adolescence and adulthoodis reviewed, along with variables in early life that are predictive of later function-ing.

The past two decades have seen a new perspectiveon autism emerge. The once prevailing view of autismas a psychogenic emotional disorder has been gadual-

This article is based on a presentation made by the authorat the St. Joseph Hospital Fourth Annual Conference onChildrrn and Youth, November, 1984, Memphis, Ten-nt...ce. Reprint requests should be addressed to:

Sam 13. Morgan, Ph.D.Department of PsychologyMemphis State UniversityMemphis, TN 38152

ly displaced by the concept of autism as a develop-mental disorder in which cognitive dysfunction playsa central role. This shift in perspective culminated inthe 1979 title change of the Journal of Autism andChildhood Schizophrenia to the Journal of Autismand Developmental Disorders (Schopler, Rutter,Chess, 1979) and the recent classification of autismas a pervasive developmental disorder by the Diag-nostic and Statistical Manual of Mental Disorders:DSM-III (American Psychiatric .Association, 1980).This developmental perspective has evolved out ofcumulative research findings which show that: (a)aUtism is consistently associated with organic morethan psychosocial variables (DeMyer, Hingtgen,

BEST COPY AVAIIABLE

136

Jackson, 1981; Piggot, 1979; Rutter, 1979) and (b)cognitive impairment represents the primary andmcist enduring psychological handicap in autism (De-Mye- t al., 1981; Morgan, 1984; Rutter, 1983).

article fccuses on some major shifts in think-ing auout autism that have occurred in recent years.These revisions in thinking have not only theoreticalimplications, but also relevance for those practitionersprc-,iding service to autistic children and adults. Thechanges center on the definition of autism, the natureof the basic impairment, and the relative contributionof biological versus psychosotial factors to the de-velogment of the disorder. These changes also ad-dres6 issues of treatment, educational, and vocationalneetiS, aswell as long-term prognosis.

Changes in Definition

The official history of autism began in .1938 whenLeo Kanner, Director of the Child Psychiatry Clinic atJohns Hopkins, ..saw a 5-year-old boy from 'a smallMississippi town (Kanner, 1943, 1973). The boydemonstrated a novel cluster of behavioral symptomsthat Kanner had never seen before nor read about inthe literature. Although Kanner appreciated the

uniqueness of*the syndrome presented by this young-ster, he could not have foreseen at that time the vastimpact that this disorder would have on the behavioralsciences and the long-standing controversy that wouldsu rid it. By 1943, Kanner had seen 10 more chil-dre,, who presented this strange set of symptoms.That year, he published his now classic article thatfirst described these children and proposed that theirsymptoms represented a rare behavior disorder (Kan-ner, 1943). The next year, he coined the term early

infantile-autism for the syndrome (Kanner, 1944).

Kanner (1943, 1949) outlined five major symptomsas composing the syndrome. First and foremost wasthe inability of these children to relate normally topeople and situations from the start of life. Through-out infancy and childhood, they maintained what,Kanner called "autistic aloneness," forming no ap-parent attachments to people and seeming to live in

their own world, as if others did not exist. The secondfeature was the children's obsessive need to maintainsameness in the environment. The third characteristicwas their failure to use language for the purpose of

cormswnication. The fourth was their fascination withobjects, and their abiFity to handle them with 'dex-terity. The fifth was their good "cognitive potenti-alities," as inferred from their attractive appearancesand serious facial expressions, and the extraordinaryskills demonstrated in certain isolated areas.

nespi t e the intensive scrutiny to which autism hassubjected over the years, Kanner's orisinal be-

ha. ioral syndrome has sur..ived in fairly intact form.The recent revisions in definition relate more to hisinferences about the disorder than to the behaviorper se. One revi:iion concerns Kanner's inference that

autistic children have "good cognitive potentialities."Another change relates to the assumption that autis-tic children are neurologically intact. Recent defini-tions of autism, such as those offered by DSM-III(American Psychiatric Association, 1980) and theNational Association of Autistic Children (Ritvo &Freeman, 1977), do not include normal intelligenceand absence of neuropathology as criteria. Autism isnow assumed to occur at all levels of intelligencewith or without demonstrable organic pathology.

In DSM-III,.which provides the most widely usedset of diagnostic criteria for autism, the disorder islisted as a pervasive developmental disorder. Suchdisorders, which in the past had been called child-hood.psychoses, are characterized by marked distor-tions in the timing, rate, and sequence of many psy-chological functions. The six criteria for autism byDSM-III are:

(a) onset before 30 months of age

(b) pervasive lack of responsiveness to otherpeople (autism)

(c) gross deficits in language development

(d) if speech is present, peculiar speechpatterns .

(e) bizarre responses to various aspects ofenvironment (e.g., resistance to change,peculiar interest in or attachments toinanimate objects)

( f ) absence of delusions, hallucinations, looseningof associations, and incoherence as in

schizophrenia(pp. 89-90)

Cognitive Impairment in Autism

The exclusion by DSM-III of any,.stipulation of

normal cognitive functioning is based on longitudinalstudies showing that most autistic persons revealsubstantial cognitive impairment that persiststhroughout their lives. There is no longer any doubtthat, in most cases, autism and mental retardationcoexist (Schopler & Mesibov. 1983). Although the

level of functional intelligence varies widely in au-tistic children, the vast majority function within theretarded range ( Bartak & Rutter, 1976; DeMyer et. al.,

1974). About 60e;.. of autistic children have IQs be-

low 50; 20r; have IQs between 50 and 70; and only

20':; have IQs of 70 or higher (Ritvo & Freeman,

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AUTISM: CHANGING PERSPECTIVES

1977). Further, the intellectual level remains stablethroughout the lives of most autistic individuals (Rut-ter, Greenfekl, & Lockyer, 1967).

It is often stated that the. mental retardation inautism is spurious, because th IQs obtained onautistic children are not representative of their "true"intelligence. The autistic child who obtained a lowIQ or is "untestable" is often viewed as inaccessible,inattentive, and resistant to testing. No consistentevidence exists to support the argument that thegenerally low intellectual scores are more a functionof negativism than cognitive impairment. Further, athimber of studies have demonstrated that the "un-.testability" reflects low ability more than refusal toparticipate (Alpern, 1967; Alpern & Kimberlin, 1979;Hingtgen & Churchill, 1969, 1971). These studies re-veal that valid measures of "untestable" autisticchildren can usually be obtained if the .tests are notdependett on language and are commensurate withthe child's developmental level.

Also reflective of a hasic cognitive impairment isthe language retardation found in the preponderanceof autistic persons. A growing body of evidence pointsto language deficiency as a central feature of thedisorder. At least 28% of those diagnosed autisticare mute (Lotter, 1967). Those who do developspeech show a wide range of individual differences inability to communicate, with most demonstratingsubstantial retardation in language development (Bar-tak, Rutter, & Cox, 1975; Lord & Baker, 1977). Thelanguage defects usually appear at a very early age;in fact, speech delay represents the most frequentearly complaint by parents of autistic children (Ornitz& Ritvo, 1976).. The early deficits tend to persist;autistic children, regardless of age, generally performwell below expectations for age. The typical 6-year-old autistic child, for example, functions at or belowthe 3-year-old level on most language tests. More-over, these language scores are usually well belowdevelopmental ages estimated from nonverbal per-formance tests (DeMyer, 1976; Lord & Baker, 1977).

The cognitive variables of language and IQ assumeeven greater importance in light of the finding thatthey represent the most potent predictors of theautistic child's eventual adjustment. Onset of mean-ingful speech before age 5 or 6 appears to be crucialto later adjustment (Kanner, 1971; Kanner, Rodri-quez, & Ashenden, 1972; Lotter, 1978; Rutter, Green-feld, & Lockyer, 1967). The child who develops func-tional speech by this age at least stands a chance toattain marginal or good adjustment, whereas themute child has virtually no chance at all. The mea-sured intelligence of the young autistic child alsoserv, ; as a strong predictor of later adaptation. Thehighcr the IQ, the closer the child will approachnormal adapt tion. Two independent studies (De-Myer et al., 1973; Rutter & Lockyer, 1967) demon-strated that an IQ below 40 is invariably predictive

136

of poor outcome; conversely, an IQ above 60 orgreatly inCreases the chances of educational progreand social adjustment.

The isolated abilities shown by autistic childrcoften mislead us to overestimate their cognitive ptential and underestimate their cognitive impairrner.These so-called "splinter skills" prompted Kannerhis early writing to attribute "good cognitive pote:tialities" to these children. These abilities, which diferentiate the autistic child from the child whosimply retarded, include motor and spatial skitrote memory, and hyperlexia (Cobrinik, 1974; DMyer et al., 1981; Rimland, 1964; Whitehouse & Haris, 1984). For many years, the assumption prevailethat these scattered skills gave glimpses of the child"true" intelligence, which was masked by withdrawand negativism.. This led to the further assumpticthat the child's normal intelligence would emerge fu:blown with removal of the emotional barriers.

The research already noted fails to support theassumptions of good cognitive potential in most aut.:tic children. Even though autistic behaviors may dminish somewhat as the child grows older, the inferrcpotentialities are seldom realized. The isolated ski:rarely merge into any adaptive intelligence that e:ables the child to understand and cope flexibly withe world. Most autistic individuals, then, rnaintalifelong cognitive impairment. he specific defe .underlying this impairment remains the subjectspeculation, but intensive scientific effort, in tiform of theory development and research, continuin an attempt to better understand what the defeis and how it is caused (Morgan, 1984, in presRutter, 1983).

Autism as a Biogenic Disorder

The psychogenic theory of autismthat is, tlhypothesis indicting psychosocial variables as p:mary causes of autismappears to be sufferingslow and painful death. However, just when titheory seems to be laboring for its last breath, sornone attempts to resusitate it. No less a behaviorscientist than the Nobel laureate Niko Tinbergenrecently emerged as -an advocate of psychogentheory (Tinbergen & Tinbergen, 1983). Surprisinglthough, he presents highly speculative, anecdotal:based arguments reminiscent of those proposed 11Bettelheim (1967) almost 20 years ago in his bocThe Empty Fortress (which Kanner [1969] referreto as the "empty book").

The primary reason for the demise of psychogentheories of auti ;m can be simply stated: Therelittle, if any, evidence to support such theories. I

view of the evidence (or lack thereof), one wonde.how the theories have survived as long as they havAlthough no clear and consistent cause of autis,has been determined, the inescapable inference to I

drawn from numerous studies is that the disorder ismore clearly related to biogenic than psychogenicfactors. Within the scope of this articlenne cannotbegin to review the research that bears on this issue;sue review would fill several volumes. Neverthe-less, ,urnmary of some of the major lines of evidencewill be presented.

First is the question of whether parents of autisticchildren show special psyehological characteristicsthat may be pathogenic for a ntism. Kanner (1943,1949) and other writers (e.g., Eisenberg, 1957) arguedthat these parents are indeed a very special group inintelligence and personality. The classic "parent-of-an-dutistic-child" that emerged from the literaturewas;a higialy intelligent, aloof, cold superachiever ofhigh socioeconomic status. More recent, better con-trolled research casts doubt on this stereotype andsuggests that it was based on biased samples. In acomprehensive study, Schopler, Andrews, and Strupp(1979) found no significant class differences ,in fam-ilies of 522 autistic children evaluated at the Uni-versity of North Carolina at Chapel Hill. In a reviewof research on family factors in autism, McAdoo andDeMyer (1977) concluded that parents of autisticchildren, in comparison to parents of children withother behavior disorders or handicaps, generally ex-hibit no deviant personality traits such as obsessive-ness, coldness, or social anxiety, and no particulardefic;fs in acceptance, nurturance, warmth, feeding,and ieral stimulation of their infants. A recent,well- __aclucted study by Koegel, Schriebman, O'Neill,and Burke (1983) further supported this conclusionby demonstrating that families of autistic children donot differ from "normal" families in terms of parentalNIMPI profile, marital happiness, family interactions,and parental stress. In view of the absence of researchfindings to support the psychogenic position, theburden of proof still rests squarely on the shouldersof the psychogenic diehards.

While there exists little evidence to support psycho-social causation of autism, we can point to clear andconsistent findings that bolster the biogenic position.Because autism appears to emerge during early in-fancy, it is reasonable to suspect a genetic component.Indeed, twin studies have demonstrated a substan-tial genetic predisposition toward autism (Folstein &Rutter, 1977; Spence, 1976). Identical twins show amuch higher concordance rate for autism than dofraternal twins. We cannot conclude, however, thatthe primary cause of autis:n resides in a single gene(as in phenylketonuria) or chromosome (as in DovrnsSyndrome), but rather that genetic factors appear tooredispose some children toward developing the dis-ordr

0 research has demonstrated that autism canarise from a number of diverse neuropathological con-litions, which include phenyiketonuria, congenitali.uhella, tuberous sclerosis, lead intoxication, congeni-

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tal syphilis, and Fragile-X Syndrome (Brown et al,1982; Darby, 1976; Piggott, 1979; Rutter, 1979). Re-cent studies (e.g., Jones & Prior, 1985) report moresigns of neurological dysfunction in autistic childrenthan were noted earlier. These dysfunctions oftenemerge more clearly as the children grow older, evenin those children who originally showed no such prob-lems (Rutter, 1970; Wing, 1976). For example, thenumber of autistic children with abnormal EEGs issignificantly higher than once suspected, and aboutone fourth or more exhibit convulsive disorders bythe time they become adolescents-and adults (Rutter,1970).

The most plausible conclusion that we can drawfrom the available evidence is that autism is the be-havioral end-product of an underlying organic defect(or combination of defects) that may arise in dif-ferent ways through a variety of possible causalagents. The underlying defect or damage not onlyaffects cognitive functioning but also emotional andaffective perception and responsiveness (Rutter, 1983;Morgan, 1981, in press). By accepting the conclusionthat the autistic child has an organic disorder, we donot deny that the disorder can be aggravated or im-proved to some extent by social and psychologicalinfluences. We are only rejecting the idea that thedisorder is caused by such influences.

Intervention and Treatment

Despite claims made by more ardent advocates ofcertain treatments, there is no cure for autism. Someinterventions, however, appear to help more thanothers. The most effective treatment programs arethose that are started early and pervade the child'stotal life. Such progTams require early diagnosis ofautism, early counserig of parents, strong parentalinvolvement in the child's treatment, and well-struc-tured, individualized special education. For teachingthe young autistic child speech, social, and self-helpskills, application of behavior modification principleshas been effective and appears to enhance adaptivefunctioning (Lovaas, Koegel, Simmons, & Long, 1973;Schriebman, Charlop, & Britten, 1983). Autistic chil-dren who respond best to behavioral treatment pro-grams generally have parents who ate willing toassume the role of primary therapists. Such treat-ment is much more effective when initiated early,and when the parents are committed to placing de-mands on the child and carefully managing behavioralcontingencies.

Along with early intervention and parental involve-ment, special education has been shown to play anessential role in helping the autistic child to adapttti the world (Rutter 8.: Bartak, 1973). Many corn-! ,unities now have special education programs de-signed to meet the needs of children with autism andrelated disorders. Such programs focus on the de-

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ALfISM: L!-LANGLCG PERSPE(..;TINES

velopment cf speech and cognitive skills, as well associal and adaptive skills. Special eclucation efforts,re most productive when integrated within broad

-rimu ni ty-based treatment programs. The TEACCHl'reatment and Education of Autistic and related

Communications handicapped CHildren) programs inNorth Carolina represent a community approach thatprovides comprehensive educational and treatmentservices to autistic individuals and their parents(Reichler & Schopler, 1976). Unfortunately, mostcommunities fall short of offering sufficient servicesof this kind.

An important, but often overlooked, aspect of in--tervaltion concerns the impact of the autistic child onparents and family members. For many years, thefocus was on the influence of the family, particularlythe parents, in the development of autism. With re-search now pointing overwhelmingly to organic causa-tion, attention has gradually shifted to the specialproblems thet an autistic individual creates withinthe family system. The National Society for AutisticChildren and affiliated local chapters has-e servedfor some time as a source of support and informationfor parents and family. Professionals are now recog-nizing the special needs of the family, and are direct-ing more effect toward research on family issues anddevelopment of appropriate services. In fact, a recent

The Effects of Autism on the Family (SchoplerNIesibov, 1984), deals exclusively with this topic.Another recent development in intervention has

centered on the special needs of the autistic individualwho has entered adolescence and adulthood (Schopler& Mesibov, 1983). Of special concern is vocationaltraining and placement as well as provision of ade-quate adult residences, such as community group.homes, as alternatives to institutional placement.

Since most evidence points to physical causation inautism, there have been increased attempts to findan effective biochemical treatment. Although a num-ber of drugs have been tried, none have been success-ful in eliminating the basic symptoms of autism.Some have been useful (e.g., Haldol, Flenfluramine)in partially controlling associated problems, such ashyperactivity, attention problems, sterotypic behavior,and sleep disturbances (August, Raz, & Baird, 1985;Campbell, Geller, & Cohen, 1977; Campbell, 1978).Rather than serving as a primary treatment, suchdrugs are generally used as adjuncts to behavioraland educaticnal interventions.

A controversial form of biochemical treatment thathas received a great deal of publicity is so-calledmegavitamin therapy. Although improvement in be-

vior of some autistic children has been reportedill high doses of single or multiple vitamins, the

results are inconclusive, and additional studies areneeded to establish the effectiveness of such treat-ment (Rimland, Callaway, & Dreyfus, 1978). Becauseof sometimes misleading publicity, parents tend to

initially view special diets and vitamin therapies aspanaceas, but later are disappointed with overallresults.

Traditional psychoanalytic and "play therapy" ap-proaches have failed in the treatment of autism (Rut-ter & Bartak, 1973; Schriebman, Charlop, & Britten,1983). Aside from being time-consuming and oftenexpensive, such approaches show no correlation withlater outcome.

Long-Term Adjustment of Autistic Individuals

The question that eventually enters the minds ofmost persons interested in autistic children is: Whathappens to them when they grow up? The only basisfor answers to this question is the available informa-tion we have on autistic individuals who have alreadyreached adolescence and adulthood. From such data,we have determined those variables that are asso-ciated with long-term improvement and adjustment.The conclusions that we draw from such data, how-ever, must be tentative and subject to revision; manyof the individuals studied, especially those who arenow adults, did not have the benefit of intensive earlytreatment or special education programs now avail-able to autistic children in many communities.

The current outlook for autistic children as adultsis generally poor. In a recent review of 'all follow-upstudies on autistic children, Lotter (1978) reportedthat only 5-17% eventually achieved "good outcomes"as adolescents or adults; that is, their social life wasnear normal, and school or work performance wassatisfactory. On the other hand, 61-74% had "verypoor outcomes" and were incapable of leading inde-7pendent lives.

As noted previously, two of the strongest predic-tors of positive outcome are early communicativespeech and relatively hi-gh measured intelligence(Kanner, Rodriquez, & Ashenden, 1972; Lotter, 1978) .Other factors related to later adjustment includeneurological factors, severity of early symptoms, playbehavior, early intervention, parental commitmentto treatment, and special education. Seizures andother clear signs of neurological dy-sfunction or dam-age are correlated with severity of retardation andlong-term impairment (Lotter, 1978). The severityof early symptoms.also relates to later adjustment;the more pronounced the autistic syndrome, thepoorer the response to treatment and educationalprograms (DeMyer et al., 1973). The young autisticchild's play behavior also gives clues about prognosis;if the child plays appropriately with toys before age5, this is a positive sign (Brown, 1960). Further, ifthe parents are willing to commit themselves to asystematic behavioral program for the child at anearly age, then chances of later adaptation are in-creased (Lovaas et al., 1973; Schriebman & Koegel,

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SAM B. MORGAN

1975). Finally, participation in a well-structured spe-cial education program where the child teceives in-dividual attention improves the long-term outlook(R. & Bartak, 1973).

t should not view these factors as final answersto the questions of long-term prognosis in autisticchildren, nor should we regard them as infalliblepredictors of success or failure. We must keeP inmind that most of the intervention programs, such

as TEACCH, have been developed only in recentyear4: This is especially true of the therapeutic andedueational prozrarns that intervene early in thelivevf young autistic children. We should remember,too, that number of research projects, ranging frombehavioral to cognitive to biochemical, are currentlybeing conducted. This research should yield answersthat will aid us in developing more effective preven-tive and treatment prograins-programs that willcast a more optimistic light on the prospects of theautistic child.

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Sam B. Morgan, Ph.D., is Professor of Psychologat Memphis State University. His clinical work an(research deal primarily with childhood behaviora:learning, and developmental disorders. He was forrnerly Associate Professor and Chief of Psycholoz:at the University of Tennessee Child Developrner.Center.

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