DOCUMENT RESUME
ED 396 464 EC 304 843
AUTHOR Hughes, Carolyn; And Others TITLE Peer Tutor Handbook. A Curriculum for High School Students Serving as Peer Tutors to Students with Special 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 not reproduce well. PUB TYPE Guides Classroom Use Teaching Guides (For Teacher) (052) Tests/Evaluation Instruments (160)
EDRS PRICE MF01/PC06 Plus Postage. DESCRIPTORS Course Content; *Helping Relat!)nship; High Schools; High School Students; Peer Relationship; *Peer Teaching; Role Models; *Secondary School Curriculum; *Special Needs Students; *Tutorial Programs
ABSTRACT This curriculum is designed for a high school course in which nondisabled students receive training and act as peer tutors and role models for peers with special needs for one class period each day. An introductory course description covers peer tutor qualifications and requirements, examples of activities with peers, and benefits to peer tutors. A section on the tutor's role offers guidelines on motivation, the tutorial relationship, techniques of tutoring, setting goals, and suggestions for getting to know the tutee. The next section offers ideas and an activity for training peer tutors. A section of course-related forms includes tutor scheeule forms, the record of tutor experiences, tutor evaluation forms, and observation schedules. The following section introduces special education services and covers such topics as current trends, legislation, definitions of key terms, discipline, and misconceptions about individuals with disabilities. The subsequent six sections each address a specific disability area with a variety of materials which include a general information fact sheet, a list of common misconceptions, 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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A Curriculum for High School Students Serving as Peer Tutors to Students with U.S DEPARTMENT OF EDUCATION Off ce of Edocal.onat Reseatch and Improver leo. EDUCATIONAL RESOURCES INFORMATION CENTER (ERIC) This document has been reproduced as Special Needs received from the person or organization originating it O Minor changes have been made to improve reproduction quality
Points of view or opinions stated in this document do not necessarily represent official OERI position or policy
Carolyn Hughes, Ph.D. Sarah Lorden, Carol Guth Stacey Scott, Judith Presley Peabody College of Vanderbilt University
PERMISSION TO REPRODUCE AND DISSEMINATE THIS MATERIAL HAS B EN GRANTED BY .s%..". , 1995 TO THE EDUCATIONAL RESOURCES INFORMATION CENTER ;ERIC)
This manual was prepared with support from the Project Supporting Inclusion of Students with Disabilities in Public School Classrooms, funded by the Tennessee Developmental Disabilities Council
BEST COPY AVAILABLE TUTOR HANDBOOK
I. Course Description The Tutor's Role
III. Sample Activities andLesson Plans
IV. Evaluation Forms
V. Introduction to SpecialEducation Services
VI. Mental Retardation
VII. Learning Disabilities
VIII.Visual Impairments
IX. Hearing Impairments
X. Speech and LanguageDisorders
XI. Autism References*
Bakke, B. L.(1990).Self-injury: Answers to questions for parents, teachers, and caregivers.[Brochure].Institute for Disabilities Studies, University of Minnesota; Minneapolis.
Breen, C., Kennedy, C., & Haring, T. (Eds.) (1991). Social context research project: Methods for facilitating the inclusion of students with disabilities in integrated school and community contexts. Santa Barbara, CA: University of California
Fulton, L., & LeRoy, C. (1994). Peer education partners.Project Rise and the San Bernadino Unified School District. San Bernardino, CA: California State University.
Hallahan, D. P., & Kauffman, J. M. (1994). Exceptional Children: Introduction to Special 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 of Child 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 Center for Autism. Bloomington: Indiana University.
Whorton, D., Walker, D., McGrale, J., Rotholz, D., & Locke, P. (1988). Alternative Instructional Strategies for Students with Autism and Other Developmental Disabilities: 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 for Children and Youth with Disabilities; Autism from the Autism Society of America; and Common 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 and
P. ,/e role models for students witlii special needs at McGavock High School. The tutors will receive instruction a. 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 needs n the day to day activities at McGavock High School and beyond.
Qualifications:
Students must have: an interest in the peer tutoring program To be taken as an elective:
. an adequate GPA 1/2 credit per semester good attendance 1 class period per day grade levels 9-12 a recommendation from a teacher or counselor
Requirements:
Students acting as peer tutors will report daily to an assigned teacher of one of the self-contained classes for students with disabilities. The peer tutor, teacher, and tutee will discuss and decide on an activity in which the tutor and tutee will participate. The tutor will be required to keep a daily or weekly journal, complete a weekly 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, basic reading skills, and social integration and interaction
o eating lunch togetherworking on table manners, eating skills, social integration and interaction
o academics in the classroomworking 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 sidlls o they will practice academic and social skills o they become advocates and learn valuable advocacy skills o they are provided with realistic career exploration for education or human service profession, and o 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 will be the first Metro school to participate in the peer tutoring program. The program is designed as a step towards the inclusion and integration of all students into the regular day to day activities of McGavock High School.
. cipatinFaculty: Cheryl Gentry, Bryan Campbell, & Marilee Dye
BEST COPY AVAILABLE Team Leader: Gladys Henderson SPECIAL EDUCATION CLASS DESCRIPTIONS
Ms. Henderson's Class: The students in Ms. Henderson's class are workingon a variety of skills including, academic, vocational and social skills.All of the students have good communication skills. Some of the students in Ms. Henderson's clas's take classes outside of her class or are mainstreamed. Many of her students have jobs outside of school.
Ms. Dye's Class: The students in Ms. Dye's class work on vocational, academic and social skills. The students in her class have good communication skills and also take classes in the mainstream.
Ms. Gentry's Class: The students in Ms. Gentry's class are not as "high functioning" as in Ms. Henderson's and Ms. Dye's classes. The skills that the students in her class focus on are vocational and social. some of the students in her classroom communicate using sign language and by other non-traditional means.
Mr. Campbell's Class: The students in Mr. Campbell's class have Autism. The skills that 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 from the Tennessee Department of Education In>> cTEM oVILW2-8 '84Tauv (REnA
TUTOR'S MANUAL
South Central Bell A BEISOUTH Company
Tennessee State Departmentof Education
9 INTRODUCTION The students being tutored in thisprogram often feel :locked out of the learningprocess. One reason for this feeling is not knowing lactw to tacklean assignment. Good study habits are themost iMportant key to learning.
On the followingpages you will find suggestions and examples for developing study skills. These suggestionsare not to preach or teach; most ofyour study partners have heard it all before. They have not, however, learnedor practiced good study habits. Using these skillsas you work together may be your biggest contribu-Eion to your study partner's increasedsuccess in school.
Leaning isan active process. We learn through watching, listening, thinking, reading, practicing and doing. Yourpositive attitude and positive behavior will bemore important than anything you can say. You cannot study for your partner, but you can guide the studyingprocess and set an example.
Good News! Your study skills might be strengthened,too.
Thatt©IThp Bewarel 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 one doughnut instead of owning the bakery. A
The M work is a majorreason for success in school andlater in life. The lack of it is a majorreason for failure. Many tutors have reported this to me with great alarm"my study partnerdoesn't dare." Several things should be saidat this point. Some tutoitips:
I don't care often is a cover-up for I don't knowhow: Struggling students get further and further behind untilThey reach a point that they do not know the question to ask much less the answer. They act as if I don't care.
Motivation is caughtmore than it is taught.. Your motivation may rub off. Your study partner's interest in school work rnay be increased because ofyour interest in him as a person.
Relationships havea lot to do with our own reason to be motivated. Think briefly aboutyour own school experience. What teachersare you most anxious to please? When do your put extra effort intoyour work? In what classes do you care more about your performance? How much didyour answers have something to do with your relationship withyour teachers? Probably a lot!
%1 Goals also play a big part in mOtivation. They keep us on trackgoing in a certain direction. Your study partner may have very few if any goals. Thus, he or she may have little or no direction and motivationmore about this when we talk aboutgoal setting. The M work is greatly connectedto ones interest.We actually work harder inareas we like. While I am highlymotivated about football, drivingmany hours to see a game, I would notwalk across th e. street tosee a hockey matchbut many would!Find argas of interest that your study partner may have. Ifthere is motivation inone areathere is hope for motivationin another. I could learn to be motivated about hockey. Aprevious tipmay also apply;I don't know may be a reason I don'tcare about hockey. The R word is the keyto being a successfultutor. Itrequires work, sweat andeven on occasion tears. This is thereason the G.S.RP. requiresa one on one tutorial relationship. If"Sam" hasa ;different tutor eachtime they meet it isvery difficult forany .7"b9nding"to take place. "Sam" needsmore than a tutorial pool he needsone individual with whom he can becomea friend.
Irma IN7©RIALRullJ Be a friend first, tutor secondandnever the teacher.
TIPS FOR THERELATIONSHIP Get to 'Know Sam. Findout his interest/likes, dislikes/hobbies. Use the interestinventory to get you thinking. It isnot designed for you to hand out to Sam saying "Fillensout, I'll be back to get it in 10 minutes."
ckL, Keep in contact witll Sam Thisis not tutorial timebut in the hall, at lunch,or on thr, bus. If Sam says, "I can'tcome to our study this time, Aunt Matilda fellout of a barnover at Bucksnort and broke her big toe. We haveto go see her." What shouldyou say whenyou see Sam again? (Answer "How's Aunt Matilda's toe?")
Be patient with Sam Yourstudy partnermay notmost likely react as quic...-clyas you do. Learning may not beas easy for Sam. His learningmay be distracted due to other problems in his life. This will require workon your part unless you are one of the lucky ones born with a lot of it.It will be worth the effortyour charactermay be strengthened. ctt, Be positive with Sam Show him whatis riQht with hiswork Howcan you say you've got this wrong.withoutsaying you'vegot it wrong? ."Let's doit again" isa good statement. Showprogress that is being made praise whensuccess happens. Sam hashad enough negatives.Positive reinforcementwill helpyour study partner to "feel good"I can will lead to I DID!Beware thatthe negative also worksI can failmay lead to I DID FAIL!
Always exhibita caring attitude! I care aboutyou: I want you to do -better in school.Remember ti-ie vehicle thatcarries what yoti know toyour study partner isa caring spirit. YOUR STUDY PARTNER NEEDS ToKNow You CARE beforethey willcare about whatyou know. Your successas a tutor is not dependentupon how muchyou know, but rather how muchyou care. 6 S. JO,
BE POSITIVE NOTNEGATIVE. Place yourself inyour study partner's situation. Sincere compliments always workbetter than embarrassing criticism. Drop "no" fromyour vocabulary. ctN BE COURTEOUSAND .THOUGHTFUL. This includesstarting and stopping a lesson on time and being attentiveto your study partner's conversation about himself and his personal problems.If you're willing to listen, you"l be amazed at how muchhe can teachyou. USE HUMOR TOMAKE TI-IE SESSION FUN. Never hesitateto admit a mistake or thatyou don't know something. It can be a great learning situation togetl ler.
BE PATIENT. We allrequire understanding from others, and learning can be difficult when other problems inour lives also demand attention.
UNDERSTAND thatevery learner has a lot of experience, information and knowledgeeven though his formal education may not have been adequate.
You will often be theone who provides the encouragement to continue. DISCUSS THE PROGRESSYOU HAVE MADE, and write down what has been learned. It helpsyour study partner see his progress toward his goal.
BE FLEXIBLE. Neverthink that because you've startedone method that changes cannot be made. Thinkabout the way your study partner learns best. Maybe he needs informationnow that you planned for later. Maybe he needsmore of a challenge or a different approach. Remember that people learn differently.It's helpful when writing, listening and readingare all used, but it's up to you to find out what does succeed. MAKE SURE every lesson not onlycontains challengingwork foryour study partner but alsocontains enjoyable material thatcan be successfully handled.
YouR STUDY PARTNER SHOULD UNDERSTANDWHAT I-1E ISTO DO. It is easy to say too much,so say enough to be clear, then provide time for questions. Let himpractice with the materialbefnre workingon his own. Writing down the assignment helps.
LET HIMPARTICIPATE, NOT JUST LISTEN. Having himcorrect his own papers will help him learn what needs to beworked on.
You AREGUIDING YOUR STUDY PARTNERINTO INDEPENDENT LEARNING. Everythingyou do should lead to that. Be glad when he tells you that somethingisn't working. Thatcan mean he is analyzing some of his own learning needs.
REVIEWFOR RETENTION. Practice is good,but don't doso much of it that it becomes unthinkingbehavior just to finisha page. However, allow for enough practiceto learn the skill.
ALWAYS BEALERT to any problems needing specialattention, such as 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 sportsyou enjoy doing. baseball fishing ice skating swimming basketball football jogging tennis bicycling golf roller skating wrestling bowling handball skateboarding volleyball boxing hockey soccer other
INTERESTS: Check things'you would like to knowmore about. art detectives mystery television auto mechanicselectricity race cars woodwork basketball famous people riddles other comic books football players rock stars cowboys music stories aboutpeople
I i USE THESE QUESTIONSTO GET TO KNOWYOUR STUDY PARTNER BETIER!
Wherewere you born?
Howmany are in your family?
%, What doyou do in your spare time?
What kind of work doyou do?
ctN Why didyou take this course?
What wouldyou most like to gain from this course?
What are four accomplishmentsthat youare proud of?
%. What isyour favorite TV program?
Whatwere the best and worst things that happenec toyou last year?
If you could changejust one thing about this world, what wouldit be?
What has beenyour most emban-assing moment?
%1 What isyour favorite color and why?
What makesyou angry?
Who is your favorite person?
ckt1Ifyou could trade places withsomeone, who would it be?
j %. These things makeme feel important, for example: making a good gradeor 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 haveever done is:
ckLI feel cared aboutor appreciated when:
I AM GOOD, BUT I AM ALSO GETTING BETTER! Setting Goals
Goal setting should bean ongoing process guided by thetutor. As one goal is achieved it should be replaced by anothergoal. The study partner and the tutor should make theirgoals achievable.-A reminder: The goals should be set by the studypartner, whomay have somewhat different goals from those thetutor might set. These points should be considered when setting realisticgoals: Gáals must be realisticThis is very important becausethe purpose of goal setting is for Sam to reach one. Settinga goal and reaching it issuccess. There are some things your S.P. can do that are not related (but they really are) to A Bor C. Sam can.: a. Come to class every day next week b. Come to classon time c. Come to class with his stuffpaper, pencil, book and assignment d. Do his homeworkon time
Goals must be of short durationShorter the better. If t1-12 goal is realistic Sam should reach it. (Howcan we know what Sam can do remember previous tutor tips.) Success produces success. Praiseyour S.P. and then set another goal. Setting and reaching of goalscan be a very effective tool inthe breaking 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 debtsare high, And you want to smile, but you have to sigh, When care is pressing you down a bit Rest 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 about When they might have won had they stuck it out. Don't give up thdugh thepace seems slow You may succeed with another blow
Often the struggler has givenup When he might have captured the victor'scup; And he learned too late when the nightcame down, How close he was to the goldencrown. Success is failure turned inside out The silver tint of the clouds of doubt So stick to the fight when you're hardest hit It's when things seem worst thatyou mustn't quit. III. Sample Activities and LessonPlans
- Peer Tutor Training Ideas
- Sample Activity PEER TUTOR TRAINING IDEAS
1. Peer tutor comes to SE classroom for the designated period for the firstfew days (1-5 days).
A. Teacher talks about specific disability (characteristics of learning and behavior, specific to the designated student). :: B. Tutors move about room and choose a first and second choice for a partner 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 get acquainted. 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 ways the teacher addresses these skills).
C. Appropriate means of giving directions, reinforcing, addressing inappropriate behaviors and giving feedback.
D. Teacher individualizes instruction for each tutee.Skills and subject areas that need to be worked on.The tutor then picks the areas that they are interested in presenting to the tutee. Once theactivities are discussed, the teacher helps the tutor evaluate what tutee'sskillful in terms of the chosen activity (i.e., telling time,coin recognition, using sentences, initia ng conversation, etc.).
E. Teacher then demonstrates the activity, the tutor practices, isobserved and given feedback.
F. Teacher and Tutor discuss opportunity for social activitiesand social skills training. - SAMPLE ACTIVITY
Coin recognition
Objective: The tutee will recognize a penny, nickel, dime and a quarter.
Activity Date Accomplished
1. A group of coins is placed on the desk and the tutee is asked to give the tutor a specific coin.
2. The tutee looks at pictures of coins and identifies them.
3. The tutee uses work sheets to practice matching different coins.
4.. Using a money folder, the tutee is able to put the same coin in the box that was placed in the pocket below the box.
5. Two coins are placed in front of the tutee, one coin up and one coin down. She is asked to match the fronts and the backs of the coins.
6. The tutor creates a game to help the tutee learn to recognize coins. 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. Please indicate which individual you are most interested in working with by numbering 1-4, 1 being the 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/No If yes, please describe.
What are some of'the reasons why you are interested in working with people with disabilities?
Please list any questions, concerns orcomments you may have regarding the Peer Tutoring Class. Peer Tutor Class Schedule Name:
Clubs: Meeting time:
Fall Monday Tuesday Wednesday Thursday Friday
1
2
3
.
4
5
6
A S 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 to complete 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 your tutee, what you enjoyed, what you did not enjoy or any other important or relevant informatior,
Sample:
Date: 1/10/94 Activity: Went to the library Reflections: Today, Sarah and I went to the library to check out books. It took us a while to get there because Sarah kept stopping and talking to people in the hallway. Sarah seemed to enjoy being in the library looking at the magazines. She smiled and laughed while we looked through them. I am starting to feel more 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
TeacherName: Date:
TutorName: Tutee:
A. Peer Tutor is: Always Often Sometimes SeldomNever
1.Dependable 5 4 3 ),. 2 1
2.Shows positive attitude 5 4 3 2 1
3.Uses reinforcement 5 4 3 2 I effectively
... 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 rapport 5 4 3 2 1 with tutee
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 Observation Schedule Tutor Interview Observations Evaluation Date Date/comments Date/Comments V. Introduction to SpecialEducation 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 toRealize Goals
Issues in Special Education: An Act of Transformation
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 education has a rich history of controversy and change. In fact, controversy and change are what make the teaching and study of people with disabilities so challenging and exciting. The 1980's and 1990's have seen especially dramatic changes in the education of people with disabilities, and current thinking indicates that the field is poised for still more changes. ;' Integration Integration, sometimes referred to as mainstreaming, involves the movement of people with disabilities from institutions to community living, from special schools to regular public schools, from special classes to regular classes. As a broadly supported social issue, integration began in the 1960's and is going stronger than ever today. In the 1960's and 1970's, champions of integration were proud of the fact that they were able to reduce the number of people with disabilities residing in institutions and the number of special education students attending 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, special schools, and special classes are eliminated. They propose that all students with disabilities be educated in regular classes. And even today's more conservative advocates of integration are recommending a much greater degree of interaction between students with and without disabilities that was ever dreamed of by most special educators in the 1960's and 1970's. Normalization A philosophical belief in special education that every individual, even the most disabled, should have an educational and living environment as close to normal as possible. SPELIAL 1DUCATION LEGISLATION AND DEFINITIONS
Two landmark federal laws were passed in 1990:the Individuals with Disabilities Education Act (IDEA) and Americans with Disabilities Act (ADA). IDEA amended a 1975 law and it ensures that all children and youth with disabilities have the right to a free appropriate public education. ADA ensures individuals to non discriminatory treatment in other aspects of life and provides civil rights protection in areas of employment, transportation, public accommodations, and telecommunications.
}DEA legislation mandates that special education services be provided. Special education services 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 state standards. This is called a FREE APPROPRIATE PUBLIC EDUCATION (FAPE).
WHAT?
SPECIAL EDUCATION RELATED SERVICES INDIVIDUALIZED EDUCATION SERVICES PROGRAM Related Services are provided Special Education services are to assist the student to benefit All services must be provided -necially designed instruction from special education. according to an individualized 'ermined by the unique needs of Related Services include, but education program or IEP. An MP ote student and should be as nearly are not limited to, the is a written program developed by like the regular school program as following: the parents and the school system possible. Special Education can personnel and includes: take place in a variety of settings Transportation from the regular classroom to Hearing Services The type of services hospital or home instruction. Vision Services Long-term goals for the Counseling Services student Physical Therapy Short-term objectives or Occupational Therapy intermediate steps; not daily Speech/Language lesson plans Therapy Other 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 participation in the regular education program is called PLACEMENT. Placement must be provided in the LEAST RESTRICTIVE ENVIRONMENT. The Least Restrictive Environment is determined by 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 should he/she would attend if not school should not separate him/her be in a setting where he/she can disabled. If this is not from the regular school program be with non-disabled children as appropriate, tile place where or from peers of similar much as possible. student goes to school should be chronological age any more than as much like the regular school necessary and as close to student's home as possible. Decisions about the student's Individualized Education Program (thP) in the least restrictive 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's assessment (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-Team meeting.
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 time of 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 the student.
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 components which 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 the service, the date the service will begin and end, and who will be responsible for providing the service;
(6) The type of vocational services needed and, if they aren't needed, why such services aren't needed;
(7) A statement of the needed transition services for student beginning at age 16 (14 or younger, if needed) which will promote the understanding of and capability tomake the transition from "student" to "adult";
(8) How much time the student will participate in regular education and in special education services provided in the regular classroom;
(9) 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 person responsible for this monitoring.
After the M-Team has completed the IPP, the parent may request a copy of the TEP to take home.
NOTE: Some children with disabilities may need special equipment such as wheelchairs, braces, crutches or assistive technology devices/equipment.The school system must make arrangement, 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 CHILDREN WITH DISABILITIES?
Appropriate behavior is expected of all children.A child who has a disability and exhibits inappropriate behavior may need to be disciplined.If misbehavior is a problem, the child'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 a total 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 is considered to be a change in educational placement, the M-Team must meet to make decisions regarding 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 child cannot be excluded from an educational setting and must be placed in a setting that more appropriately meets the child's needs.
If the M-Team determines that the behavior was not a result of the child's disability, the student 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 on the goals/objectives of the child's IEP and provided by a teacher who is endorsed in Special Eclucation.
If the school system determines that a student should be removed from school for more than ten days per school year for dangerous or disruptive conduct, the system has the following options:
1. School system obtains a parent's consent, to exclude the child from school, or
2. If a parent does nor consent, school officials must secure a federal court injunction 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 and due process.
Please see enclosed handouts for explicit definitions of code of student conduct and procedures. MISCONCEPTIONS ABOUTEXCEPTIONAL CHILDREN
MYTH > Public schools may choose not to provide educa- FACT Federal legislation specifies that -,--stion for some students. to receive federal funds, every school systemmust provide a free, appropriate education for every student regardless ofany disabling condition.
By law, the student witha disability must be FACT >. The law does require the student placed in the least restrictive with a disability environment (LRE). The LRE is to be placed in the LRE. However, the LRE is always the regular classroom. not always the regular classroom. What the LRE doesmean is that the student shall be segregatedas little as possible from home, family, community, and the regular class setting whileappropriate education is provided. Inmany, but not all, instances this will mean placement in the regular classroom. MYTH )-- The causes of most disabilities are known, but FACT .. In most cases, the little is known about how causes of disabilities cre not to help individuals overcome or known, although progress is being made compensate for their disabilities, in pinpointing why many disabilities occur. More is known about the treatment of most disabilities than about their causes.
MYTH - People with disabilities are just like ev,.tryone else. FACT First, no two people ore exactly alike. People with disabilities, 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 characteristicnot shared by most people. It is important that disabilities be recognized for what they are, but individuals with disabilitiesmust be seen as having many abilitiesother characteristics that they shore with the majority of people.
MYTH - A disabilityis a handicap. FACT - A disability isan inability to do something, the lack of a specific capacity. A handicap,on the other hand, is a disadvantage that is imposed on an individual. A disability may or may not be a handicap, depending on the circum- stances. For example, inability to walk is nota handicap in learning to read, but it can bea handicap in getting into the stands at a ball game. Sometimes handicapsare needlessly imposed on people with disabilities. For example,a student who cannot write with apen but can use a typewriter or word processor would be needlessly handicapped without such equipment. MISCONCEPTIONS ABOUT PERSONS WITH DISABILITIES
MYTH >. Normalization, the philosophical principle that FACT >- There are many disagreements pertainingto the dictates that the means and ends of education for students interpretation of the normalization principle. As justone with disabilities should beas culturally normative as possible, . example, some have interpreted it tomean that all people with is a straightforward concept with little room for interpretation. disabilities must be educated in regular classes, whereas others maintain that a continuum of services (residential schools, special schools, special classes,resource rooms, regular classes) should remainas options.
MYTH >- All professionalsagree that technology should be FACT >- There are some who believe that technology used to its fullest to aid people with disabilities. should be used cautiously because itcan lead people with disabilities to become too dependenton it. Some believe that people with disabilities can be tempted to relyon technology rather than develop theirown abilities.
MYTH - Research has established beyonda doubt that FACT >- Research comparing specialversus mainstream special classes are ineffective and that mainstreamingis effec- plocement ho been inconclusive because most of these studies tive. have been methodologically flawed. Researchersore now focusing on finding ways of making mainstreaming work more effectively.
MYTH >- Professionals agree that labeling people with FACT Some professionals maintain that lobels helppro- disabilities (e.g., retarded, blind, behavior disordered)is more fessionals communicate, explain the aiypical behavior ofsome harmful than helpful. people with disabilities to the public, and spotlight the special needs of people with disabilities for the general public.
MYTH >- People with disabilitiesare pleased with the way FACT >- Some disability rights advocates are disturbed with the media portrays people with disabilities, especiallywhen what they believe are too frequent overly negative and overly they depict extraordinary achievements of suchpersons. positive portrayals in the media.
MYTH >- Everyoneagrees that teachers in early interven- FACT >- Some authorities are now of the opinion that, tion programs need toassess parents os well as their children. although families are an important port of interventionpro- gramming and should be involved in some way, special edu- cators should center tneir assessment efforts primarily on the child and not the parents.
MYTH >- Everyoneagrees that good early childhood pro- FACT >- There is considerable disagreement about whether gramming for students with disabilities should follow thesame early intervention programming for children with disabilities guidelines as that for nondisabled preschoolers.i should be child-directed, as is typical of regular preschool programs, or should be more teacher-directed.
MYTH >- Professionalsagree that all students with disabili- FACT >- Professionalsare in conflict over how much voca- ties in secondary school should be givena curriculum focused tion-' ..arsus academic instruction students with mild disabili- on vocational preparation. ties should receive.
BEST COPY AVAILABLE
4 Young photographerfocuses on attending a more accessibleIJlia
The University of Virginia should be more accessibleto Tony Hensley in a couple ofyears The problem is not academicRight now, ports of UVa's campus are not physically accessible for theWestern Albemarle High Schoolsenior Hensley was born witha muscular condition that left him weak, and he started using a wheelchair after hewas injured in an automobile wreck "I plan to attend Peidmont VirginiaCommunity College for two years and transferto UVa," he said "With the Americans with Disabilities Act,it should be more accessible in a couple of years " In 1986, nine months after havingtwo metal rods placed in his back to help correct curvature of thespine, Hensley was inlured in a car accident He was trapped in the vehicle for45 minutes, and his leg was broken in three places. Being the only senior at WAHSin a wheelchair has not hindered his progress inany way, Hensley said. The school is accessible forpeople with disabilities, he said. And his disability isno big deal to his classmates. He said he gets treated thesame as everyone else. PROGRESS PHOTO 1ST MATTGENTRY He and his 215 classmates graduate Tony Hensley says he'd liketo study business administra- tonight at 8 p.m. in tion in college. Warrior Stadium at 'he High School. With a 3.8 grade-pointaverage, Hensley is in the top 19 percent of his class. He is a member of the NationalHonor Society and the French Honor Society andhas won various Witha 3.8 grade- academic awards. Hensley lovesphotography and stays busy photographing weddingsand other events. He also point was hired to photograph several senior portraits thisyear. average, He became interested in photographywhile on the year- book staff at Heritage Christian School. Hensley is in thetop Hensley drives avan and often goes on the Blue Ridge Parkway to take photographs that hemats and sells. 10 percent ofhis class. He is not sure whether photographywould be profitable enough to make a living. "I'm interestedin business admin- istration," he said. "Eventually I'd liketo be a business owner of some sort." Hensley lives in North Garden withhis parents, John M. and Betty Jo Hensley.
BEST COPYAVAILABLE ,of.:Tronsfo. *motion: ...... , -.. .,I .. :;FLawfor ) bled loChange Worplace-')=Ativ= For a large law firm, that couLl mean providing a read- er for a lawyer who is blind; for a computer company, it could mean widening doorways or adjusting a desk's height to accommodate a systems analyst in a wheelchair. 7he' most far-reaching The law goes well beyond traditional notions of disabil- civil rights law since the ity by including any person with an impairment that sub- 1960s takes effect Sunday, stantially limits a major life activity. It protects people wit'n promising to force the kind AIDS, with cosmetic disfigurements, with dyslexia, even of wholesale changes that those who suffer from stress or depression if their condi- would make the American tion is so severe as to be considered disabling by a psychia- workplace far more hospitable to workers with physical trist .... To prepare themselves for the July 26 deadline, and mental disabilities. companies in recent weeks have been doing everything The new law, the second phase of the Americans With from scrutinizing the wording of job applications to Disabilities Act, outlines changes that companies must reviewing hiring and promotion practices to ensure noth- make to nearly every facet of employment, from job appli- ing they do could be considered discriminatory. cations and interviews, to health insurance plans, compen- Under the new law, for example, applicants cannot be sation and work schedulesall designed to extend to the asked whether they have a disability, only whether they disabled the same rights that women and minorities won are able to perform specific functions that are considered nearly three decades ago. essential to a job. For employers, that often means deter- At many companies in the Washington area and across mining just ekactly what are the essential functions of eac:-. the country, managers already are bending and flexing to job. meet the needs of disabled workers. "Is it essential for a painter in a wheelchair to be able to Marriott Corp. uses interpreters to h.elp a hearing- reach the ceiling? Probably not, if we have a crew of 32 impaired employee at its Bethesda headquarters under- other painters who can do it," said Roger Wagner, presi- stand what is being said at staff meetings. A blind manager dent of Trump Castle, which is reviewing some 600 dis- at Nordstrom's Pentagon City store has a scanner attached tinct jobs to determine their essential functions .... to his computer that reproduces ordinary documents in Even with the force of the act on their side, many advo- Braille. cates for the disabled say it will be some time before the In Atlantic City, owners of the Trump Castle casino fortunes of that community improve significantly. The altered a blackjack table to help a dealer who uses a unemployment rate among those with disabilities is esti- wheelchair. And Continental Insurance, a New York-based mated to run as I,igh as 60 percent and, as a result, many, property and casualty company, has an enlarging device lack the skills necessary to compete for jobs. attached to a computer so that a clerical worker with poor "It is a Catch-22," said Peter Blanck, a University of vision can see her keyboard more clearly. Iowa law professor who is involved in a study of persons Since it affects all industries, and ultimately touches with disabilities. "If you haven't been in the work force, millions of businesses, the act has a scope matched by few you won't have the skills needed for a lot of jobs." other laws. Generally, it is being praised by businesses as an effort to reach out to a disenfranchised segment of soci- The act does not mandate job quotas; it only requires cty. But it also has drawn criticism from industry groups that employers hire and promote qualified candidates, that fear it could open the floodgates to litigation and sub- whether they have a disability or not. ject businesses to large financial judgments by juries.... To Mary Beth Chambers, a deaf employee who works The law does not state precisely what a company must the cosmetics counter at Nordstrom's Pentagon City store, do or spend to ensure that it does not discriminate, since the struggle for equality in the work place is well worth it. what is appropriate for a commercial giant like IBM might "It's not people's fault that they're hearing-impaired," not be for a small retailer. What the law does require is said Chambers, who reads customers' lips. that employers make "reasonable accommodations" to "Companies don't know what they're missing," she assure that qualified applicants with physical or mental said. "These people are capable of doing anything, and if they keep trying, their dreams will come true." disabilities are not discriminated against, unles . the employer can show that the accommodation would put an SOURCE:Liz Spayd,The Wnshington Post,Sunday, July 26, 1992, "undue hardship" on its operations. pp. CI, C9. (c) 1992, The Washington Post. Reprinted with permission.
43 BEST COPY AVAILABLE Peer-Group Education
Although the widening world of Today many preschools integrate children childhood contains hundreds oflessons with developmental disabilities intoclasses delivered by parents and teachers,young with their "normal" peers. And what often people deliver powerful lessonsto one goes on in such settings can enlighten us all. another, too. Small children are uncanny A documentary film, Why Be Friends,de- about teaching each other "the ropes"to scribed integrated preschools ineastern Ne- acceptable childhood living. For example,I braska. "Normal" children spoke openlyand recall seven-year-old Bob McGee, withmen- in unrehearsed fashion about their friends tal retardation and cerebral palsy, whofell to with handicaps. One four-year-oldwas asked the floor kicking and screamingevery time a about her relationship witha friend having teacher tried to take off his bib. Thenwhen multiple handicaps. the developmental center closeddown and "What's that thing behind Carrie's head?" Bob was transferred toa special class in a "That's the -thing that holds her head." regular public school, he had attended for "Why does she have to have that?" only two days before the bibcame off! It takes "Because then her head won't do anything, little imagination to know what probably but it helps her lean backa lot." went on between him and the other students. "How would you feel if Carrie couldn't Teen-agers perform rich informal functions come here to school?" in teaching one another what life is all about "Well, then I'd go to her house." and how they want their generationto shape Experiences like these in integratedpre- the world. Although this curriculumcannot schools teach us that prejudice againstper- be found in books, teen-agers share with each sons with handicaps is learned behavior. And other their own.. . if prejudice can be taught by whatwe elders values say (or fail to say), then tolerance, respect, clothing styles and love for those with disabilitiescan be meaningful slang words taught, too. sense of justice Forward-thinking public schools recognize choice of foods the power of peer-group education. Dr. Lou hope for the future Brown from the University of Wisconsin, even their anger for mistakes their elders which has close training relationships with made before them. the Madison Metropolitan School District, (Have you forgotten?) gave a touching rationale for such involve- Until recently, many children with handi- ments at one of the symposiumson the United Nations' International Year of the caps were denied peer-group interactions Child (1979). He felt with 'others their ownage. Like victims of that neighborhood children should relate to students witheven apartheid, they attended special schools, severe and profound handicapping con- rode special buses, and participated in special ditions. recreation programs. Of course, such distinc- tive activities had value, and there always will Children with severe and profound handi- be a need for some specializedprograms. caps need to be in regular schools, too. This Nevertheless, such utter isolation produCed interaction between these handicapped stu- tragic consequences. dents and other students is utterly remark- Itplaced one more able. And why not? After all, the future barrier in their path to the richest life possible. parents of such handicapped children are in Now this unfair obstacle is being lowered. the schoolstoday. And v, hat kind of attitudes, values anci expeaations will such come so attracted to one another, we can't parents need? Also, future doctors, teachers, keep them apart.' lawyers, policemen and ministers are in the schools, too. They need to grow up with Harold Howe II, the former United States such children so they will understand them Commissioner of Education and present vice and not reject them. Therefore, we are president of Education and Research at the making conscious and systematic attempts to make sure that every student has some Ford Foundation, believes strongly thatpeer- kind of interaction with such handicapped group education will become a new way of people. And in some schools I work dosely life in public schools by A.D. 2024. He stated, with, we train regular students to handle "What the schools increasingly reward isnot seizures in school...to work with handi- the student's own achievement but his capped students at recess, in the gym and contribution to the achievement of others. the swimming pool. . to hire out as baby And the higher his own attainmentsin sitters for handicapped children... to help learning, the more he is expected to doin some learn to ride the bus...to wheel helping others to learn."2 students in wheelchairs to and from school. It will happen. We can slow it down, In many cases, regular students receive class however, as long as we keep people with credit for their involvements with handi- handicaps apart from the rest of us. capped persons. These students have be-
Consider These Options
Become interested in remarkable relationships betweenpersons with handicaps and so-called normal persons in your neighborhood. They form the stuff books and speeches are made of. I make a living from such happeningsmaybe you can observe relationships worth writing or talking about, too. Know that life becomes exciting and the worldmoves forward when people with individual differences understand and accept each other. After all, whenwe associate only with those who think like we do, act like we do, dress likewe do, talk like we dowell, it can get downright boring. Watch your local public schools. Every timeyou see them develop a program that even smells like peer-group education involvingpersons with handicaps, reinforce them. Send written thank yous. Submit letters to editors. Thank thepersons responsible personally. Even hug them and kiss them, if you can getaway with it. Know that peer-group education is a comingway of life. It is coming. It is up to us to develop detailed responses that will help it along.
1. Robert Perske, ed., The Child with RetardationThe Adult of Tomorrow: An InternationalYear of the Child Report Sponsored by the International League of Societies for the Mentally Handicapped and theAssociation 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 WhiteHouse Conference on Education, August 1, 2024," Saturday Review World (August 24, 1974).
4 z) VI. Mental Retardation
General Information about MentalRetardation (NICHCY Fact Sheet)
Misconceptions about Persons with Mental Retardation
The Importance of Friendship
General Information about Down Syndrome(NICHCY Fact Sheet)
Mainstreaming Case History: R.J. was Mentally Retarded Fact Sheet Number 8 (FS8)I cc3 NICHCY National Information Center for Children and Youth with Disabiliti.es P.O. Box 1492, Washington, D.C. 20013-1492 1-800:695-0285 (Toll Free)(202) 416-0300 (Local, Voice/. t 1) SpecialNet User Name: NICHCY ** SCAN User Name: NICHCY
General Information About MENTAL RETARDATION
Definition Incidence
People with mental retardation are those who de- Some studies suggest that approximately 1% of the velop at a below average rate and experience difficulty general population has mental retardation (when both in learning and social adjustment. The regulations for intelligence and adaptive behavior measures are used). the Individuals with Disabilities Education Act (IDEA), According to data reported to the U.S. Department of formerly_the Education of the Handicapped Act (Public Education by the states, in the 1989-90 school year, Law 94-142), provide the following technical definition 564,666 students ages 6-21 were classified as having for mental retardation: mental retardation and were provided services by the public schools. This figure represents approximately "Mental retardation means significantly subav- 1.7% of the total school enrollment for that year. It does erage general intellectual functioning existing not include students reported as having multiple handi- concurrently with deficits in adaptive behavior caps or those in non-categorical special education pre- and manifested during the developmental pe- school programs who may also have mental retardation. riod that adversely affects a child's educational performance." Characteristics
"General intellectual functioning" typically is mea- Many authorities agree that people with mental sured by an intelligence test.Persons with mental retardation develop in the same way as people without retardation usually score 70 or below on such tests. mental retardation, but at a slower rate. Others suctgest "Adaptive behavior" refers to a person's adjustment to that persons with mental retardation have difficulties in everyday life: Difficulties may occur in learning, com- particular areas of basic thinking and learning such as munication, social, academic, vocational, and indepen- attention, perception, or memory. Depending on the dent living skills. extent of the impairmentmild, moderate, severe, or profoundindividuals with mental retardation will de- Mental retardation is not a disease nor should it be velop differently in academic, social, and vocational confused with mental illness.Children with mental skills. retardation become adults; they do not remain "eternal children." They do learn, but slowly and with difficulty. Educational Implications
Probably the greatest number of children with men- Persons with mental retardation have the capacity tal retardation have chromosome abnormalities. Other to learn, to develop, and to grow. The greatmajority of biological factors include (but are not limited to):as- these citizens can become productive and full partici- phyxia (lack of oxygen); blood incompatibilities be- pants in society. tween the mother and fetus; and maternal infections, such as rubella or herpes. Certain drugs have also been Appropriate educational services that beainin linked to problems in fetal development. infancy and continue throughout the developmental period and beyond will enable children withmental retardation to develop to their fullest potential. As with all education, modifying instruction to meet Resources individual needs is the starting point for successful learning. Throughout their child's education, parents Srnith, R. (Ed.). (1993). Children with mental retardation: should be an integral part of the planning and teaching A parents' guide. Rockville, MD: Woodbine House. team. (Telephone: 800-843-7323 (outside DC area); (301) 468-8800 (in DC area).] In teaching persons with mental retardation, it is important to: Trainer, M. (1991). Differences in common: Straight talk on mental retardation, Down syndrome, and life. Use concrete materials that are interesting, age- Rockville, MD: Woodbine House.(See-telephone appropriate, and relevant to the students; number above.)
Present information and instructions in small, Organizations sequential steps and review each step frequently; The Arc (formerly the Association for Retarded Citizens of Provide prompt and consistent feedback; the United States) 500 East Border Street, Suite 300 Teach these children, whenever possible, in the Arlington, TX 76010 same school they would attend if they did not (817) 261-6003 have mental retardation; American Association on Mental Retardation (AAMR) Teach tasks or skills that students will use fre- 1719 Kalorama Road, N.W. quently, in such a way that students can apply the Washington, D.C. 20009 tasks or skills in settings outside of school; and (202) 387-1968; (1-800) 424-3688 (Toll-Free)
Remember that tasks that many people learn National Down Syndrome Congress without instruction may need to be structured, or 1605 Chantilly Drive Suite 250 broken down into small steps or segments, with Atlanta, GA 30324 each step being carefully taught. (400) 633-1555; (1-800) 232-6372 (Toll-Free)
Children and adults with mental retardation need the National Down Syndrome Society same basic services that all people need for normal 666 Broadway, Suite 810 development. These include education, vocational prepa- New York, NY 10012 ration, health services, recreational opportunities, and (212) 460-9330; (1-800) 221-4602 (To1I-Free) many more.In addition, many persons with mental retardation need specialized services for special needs. Such services include diagnostic and evaluation centers; special early education opportunities, beginning with infant stimulation programs and continuing through preschool; and educational programs that include age- appropriate activities, functional academics, transition training, and opportunities for independent living and Thts tact shee t:4nade?:Possible: throirigii .Cooptratire.grterti en t #H60,00663 ixtvreiiiitge Aeademj.farEduCitionalDeieloprisent ind competitive employment to the maximum extent pos- Program,VS Di.:Parinient OEdUC 2- sible. Oon. Thicadenis cif bits pitblICatioh do Oot neceisarilj i-ef1Cci the views or pohcin ot.the.r.itmF-ut.of.EducatIon; nor does rnenhon oftrade li'itidorsero ent by
Thls:Inforsiatlon. Is. In the.publIc do;ilaha.uniess 'othei;Aie^ ihdicated_ ... . encoca:aged to cigiy and share it, .but please erecht the Ceiliter for Children and .Ycmth with Disabilities
. . . . UPDATE 11'93 4 6 For more information contact N1CHCY.
BEST COPY AVAILABLE MISCONCEPTIONS ABOUT PERSONS WITH MENTAL RETARDATION
MYTH - Mental retardation is defined by how a person FACT >- The most commonly used definition specifies that, scores on an IQ test. in order for a person to be considered mentally retarded, he or she must meet two criteria: (1) lowintellectual functioning and (2) low adaptive skills.
MYTH >- Once diagnosed as mentally retarded, a person FACT - A person's level of mental functioning does not remains within this classification for life. necessarily remain stable, particularly for those who are mildly retarded. With intensive educational programming, some persons can improve to the point thatthey ore no longer retarded.
MYTH >. In most cases, we can identify the cause of retar- FACT >- In most cases, especially of those who are mildly dation. retarded or who require less intensive support, we cannot specify the cause. For many children who are mildly retarded, poor environment may be a causalfoctor, but it is extremely difficult to document.
MYTH >- Most mentally retarded children look different FACT >- The majority of children with mental retardation from nondisabled children. ore mildly retarded, or require less intensive support,and most of these look like nondisabled children.
MYTH >- We can identify most cases of mental retardation FACT >- Because most children with retardation ore mildly in infancy. retarded, because infant intelligence tests are not very reliable and valid, and because intellectual demands on the child increase greatly upon entrance to school, most children with retardation are not identified as retarded until they go to school.
MYTH >. Persons with mental retardation tend to be gentle FACT >- Because of a variety of behavioral characteristics people who have on easy time making friends. and because they sometimes live and work in relatively isolated situations, some persons with mental retardation havedifficulty making and holding friends.
MYTH >- The teaching of vocational skills to students with FACT >- Many authorities now believe it appropriate to retardation is best reserved for secondary school and beyond. introduce vocational content in elementary school to students with mental retardation.
MYTH >. When workers with mental retardation fail on the FACT - When they fail on the job, it is more oftenbecause job, it is usually because they do not have adequate job skills. of poor job responsibility (poor attendance andlack of initia- tive) and social incompetence (interacting inappropriatelywith coworkers) than because of incompetence in task production.
MYTH Persons with mental retardotion should not be FACT - More and more persons who are mentallyretarded expected to work in the competitive jot, market. hold jobs in competitive employment. Many are helped through supportive employment situations in which a job coach helps them and their employer adapt to the work place.
`J EJMPORTANCEVFATRIENDSHIPIs;,)==. . . s. Professionals often overlook the fundamental importance of have developed, some individuals will overcompensate: friendship. The following extract highlights the critical role calling their friend too many times, talking too longon friendship can play in the lives of people who are mentally the phone, demanding attention, and not being ableto retarded. let up... . A sense of belonging, of feeling accepted and of having Friends can play a vital role in the adjustment to personal worth are qualities that friendship brings toa community living of adults who are retarded by provid- person. Friendship creates an alliance and a sense of ing the emotional support and guidance through the exi- security. It is a vital human connection. gencies of daily life. Certain organizations have begun People who ore mentally retarded want and need to address the need for friendship by initiating social friendship like everyone else. Yet they typically have few opportunities. .. [There are] social club(s) for adults opportunities to form relationships or to develop the with retardation in which members plan theirown par- skills necessary to interact socially with others. Their ties and projects. Some programs offer supervised dat- exposure to peers may he limited because they live and ing; others establish one-to-one relationships between work in sheltered or isolated environments. They usually volunteers and clients for the purpose of aiding adjust- lack a history of socializing events like school clubs,par- ment. (Patton, Payne, & Beirne-Smith, 1990) ties, or sleepovers that help to develop or refine personol skills. They may not know how to give of themselves to With the increase in mainstreaming, many hope the prob- other people and may be stuck inan egocentric per- lems that numerous persons with mental retardation hove in spective. Persons who are retorded may olso respond obtaining ond holding friendships will decreose. In the future, inappropriately in social situations. Many people shun it will be interesting to see to what degree professionals will adults with retardation who freely hugor kiss strangers otganize social clubs exclusively for persons with mental retar- when greeting them.... dation versus having them socialize with nondisabled persons. Because of their few contacts and opportunities,per- sons with retardation may attempt to befriend strangers SOURCE: Reprinted with the permission of Merrill, an imprint of or unwitting individuals. Many attempt to become social Macmillan Publishing Compony from Mental Retardation, Third editior. acquaintances with their professional contacts. In their by James R.. Patton, Mary Beirne-Smith and James S. Payne. effort to maintain the contacts and relationships they Copyright C) 1990 by Merrill Publishing Company. (pp. 408-409) F=ct Sheet Nurr.o.er(FS4) NICHCY NationarInfarmation Center for Children and Youth with Disabilities P.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 Small oral cavity; and/or Short, high-pitched cries in infancy. 1, Down syndrome is the most common and readily identifiable chromosomal condition associated with Individuals with Down syndrome are usually mental retardation.It is caused by a chromosomal smaller than their nondisabled peers, and their physi- abnormality: for some unexplained reason, an acci- cal as well as intellectual development is slower. dent in cell development results in 47 instead of the usual 46 chromosomes.This extra chromosome Besides having a distinct physical appearance, changes the orderly development of the body and children with Down syndrome frequently have spe- brain. In most cases, the diagnosis of Down syndrome cific health-related problems. A lowered resistance to is made according to results from a chromosome test infection makes these children more prone to respira- administered shortly after birth. tory problems. Visual problems such as crossed eyes and far- or nearsightedness art higher in individuals Incidence with Down syndrome, as are mild to moderate hearing_ loss and speech difficulty. Approximately 4,000 children with Down syn- drome are born in the U.S. each year, or about 1 in Approximately one third of babies born with Down every 800 to 1,000 live births. Although parents of any syndrome have heart defects, most of which are now age may have a child with Down syndrome, the successfully correctable. Some individuals are born incidence is higher for women over 35. Most common with gastrointestinal tract problems that can be surgi- forms of the syndrome do not usually occur more than cally corrected. once in a family. Some peOple with Down syndrome also may have Characteristics a condition known as Atlantoaxial Instability, a mis- alignment of the top two vertebrae of the neck. This There are over 50 clinical signs of Down syn- condition makes these individuals more prone to in- drome, but it is rare to find all or even most of them in jury if they participate in activities which overextend one person. Some common characteristics include: or flex the neck. Parents are urged to havetheir child Poor muscle tone; examined by a physician to determine whether or not Slanting eyes with folds of skin at the inner their child should be restricted from sports and activi- corners (called epicanthal folds); ties which place stress on the neck. Although this Hyperflexibility (excessive ability to extend misalignment is a potentially serious condition, proper the joints); diagnosis can help prevent serious injury. Short, broad hands with a single crease across Children with Down syndrome may have a ten- the palm on one or both hands; dency to become obese as they grow older.Besides Broad feet with short toes; having negative social implications, this weightgain Flat bridge of the nose; threatens these individuals' health and longevity.A Short, low-set ears; supervised diet and exercise program may helpreduce Short neck; this problem. Small head; Educational and Employment Implications Pueschel, S.M. (Ed.). (1990). A parent's guide to Down syndrome: Toward a brighter future. Baltimore,-MD: Shortly after a diagnosis of Down syndrome is Paul H. Brookes. (Telephone: 1-800-638-3775.) Jnfirmed, parentsshould be encouraged to enroll Stray-Gundersen, K.(1986).Babies with Down their child in an infant development/early intervention syn- drome: A new parent's guide. Rockville, MD: Wood- program. These programs offer parents special in- bine House.[Call Woodbine House at 1-800-843- struction in teaching their child language, cognitive, 7323 (outside DC area) or (301) 468-8800 (in DC self-help, and social skills, and specific exercises for area).] _gross and fine motor development.Research has -'.,shown that stimulation during early developmental National Down Syndrome Society. This baby needsyou 7.stages improves the child's chances of developing to even more. (See address below.) his *6r her fullest potential.Continuing education, positive public attitudes, and a stimulating home envi- Organizatiorts ronment have also been found to promote the child's overall development. National Down Syndrome r 1gress 1605 Chantilly Drive, Suite 250 Atlanta, GA 30324 Just as in the normal population, there is a wide (404) 633-1555 variation in mental abilities, behavior, and develop- (800) 232-6372 (Toll Free) mental progress in individuals with Down syndrome. Their level of retardation may range from mild to National Down Syndrome Society severe, with the majority functioning in the mild to 666 Broadway moderate range. Due to these individual differences, Suite 810 it is impossible to predict future achievements of New York, NY 10012 -..hildren with Down syndrome. (212) 460-9330 (1-800) 221-4602 (Toll Free) Because of the range of ability in children with The Arc (formerly the Association for Retarded Citizens of Down syndrome, it is important for families and all the United States) members of the school's education team to place few 500 East Border Street, Suite 300 limitations on potential capabilities. It may be effec- Arlington, TX 76010 tive to emphasize concrete concepts rather than ab- (817) 261-6003; 1-800-433-5255 stract ideas. Teaching tasks in a step-by-step manner with frequent reinforcement and consistent feedback has proven successful. Improved public acceptance of persons with disabilities, along with increased oppor- tunities adults with disabilities to live and work indepenck.Litly in the community, have expanded goals for individuals with Down syndrome. Independent Living Centers, group-shared and supervised apart- ments, and support services in the community have *- : proven to be important resources for perscins with ;.:112.1s fact sheet' 1:s ade. Possibli. through ,Cooperatlye Agreement C#4930A30+?03 bCt-W-e7iii.the AC:ad fot: Edncitional Dev:eloPtient and disabilities. 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 . Resources names, comthercial'pradlicts or'aiganiiations imply endOrsement hy the S. Brill, M.T. (1993). Keys to parenting a child with Down . This information Isin thCpublie domain unless otherwLse.lndlCated- syndrome.. Hauppauge, NY: Barron's. Reilders are encouriged.to cop}, Wad share it, but plens.e credit the National Information Center for Children ind Youth with Disabilities
National Down Syndrome Congress. (1988). Down syn- . drome (revised pamphlet). (See address below.) UPDATE 12193 For mot c information contact NICIICY.
5 BEST COPY AVAILABLE OUR FIRST STEP WAS TO REAS- As a 2nd grader, R. J. made imitate his work. But by eliciting sure R. rs parents. My principal numerous speech errors duringR. J.'s own preferences, inten- and I met with them and told oral reading and conversation. tions, and interests, I helped him them that the test results would His teachers tried a variety of see himself as a valued class guide us in making good, in- approaches to help him learn tomember with his own point of formed decisions about R. 3.'s read, but with little success. view. For example, I'd ask such education. We assured them that R. J. also needed step-by-step questions as -R. J., do you have we'd work with R. J. so he could guidance to do simple seatwork. a favorite )" or "What go on to 4th grade with his These problems, coupled with do you think, R. J.?" I also as- -iends. And they volunteered to R. J.'s difficulties in auditory signed R. J. to a cooperative a tutor for R. J. and to help memory, prompted his 3rd-gradelearning group that could work ,an with his homework each teacher, Chris Kramer, to under my guidance to help him. night. suggest IQ testing. After some With the additional support of Then, feeling that "less is more" resistance, R. J.'s parents agreeda speech therapist, who worked was an appropriate guideline for to the testing, which confirmedwith him regularly on his lan- a student like R. J., I concen- that R. J. was educably mentallyguage problems, and the tutoring trated on developing his basic impaired. provided by his parents, R. J. math and language skills. Be- improved dramatica'ly. By the cause language processing was end of the year, although not difficult for R. J., I supplemented reading at grade level, he'd made all oral directions with gestures enough progress to keep up with or written cues. Not only did classmates and he was better this benefit R. J., but my other able to do independent seatwork. students seemed to attend to di- R. J.'s future success would rections more effectively as well. depend on ongoing assessment I'd also cue R. J.'s oral responses and communication among the with open-ended sentences that school's professionals and his helped him retrieve words, using parents. At the end of the year, sentence patterns such as "You with all the support techniques saw the..." or "You liked the..." set up to continue, I confidently Visual reminders, such as an in- promoted him to 4th grade. dex card on his desk reminding him to put his name on eachpa- Resources per, helped him increase his in- The Council for Exceplional Children, dependence as well as his ability Arf 1920 Association Dr., Reston, VA handle simple memory re- 22091, has information on educating fements. children with exceptional needs. BY MARY DEAN BARRINGER Because R. J. was unsure of Ma, y Dean Borringer, o former speoal educotion his own abilities, he tendedto teacher, is currently the direcior of progroms for A the advancement of teaching for the Notional attach himself to one peer and tati. Board for Frofessionol Teaching Stondords. VII. Learning Disabilities
General Information about Learning Disabilities (NICHCY Fact Sheet)
Misconceptions about Person with Learning Disabilities
"I Couldn't Read Until I was 18" Fact Sheet Number 7 IFS?), NT National Inforihation Center for Children and Youth with DisabilitiRs P.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 Incidence
VFhe regulations for Public Law (P.L.) 101-476, the Many different estimates of the number of children Individuals with Disabilities Education Act (IDEA), for- with learning disabilities have appeared in the literature rnerly P.L. 94-142, the Education of the Handicapped Act (ranging from I% to 30% of the general population). Ln (EHA), define a learning disability as a "disorder in one or 1987, the Interagency Committee on Learning Disabilities more of the basic psychological processes involvedin conclude 1 that 5% to 10% is a reasonable estimate of the understanding or in using spoken or written language, percentage of persons affected by learning disabilities. Tne which may manifest itself in an imperfect ability to listen, U.S. Department of Education (1993) reported that more think, speak, read, write, spell or to do mathematical than 4% of all school-aged children received special edu- calculations." cation services for learning disabilities and that in the 1991- 92 school year over 2 million children with learning dis- The:Federal definition further states that learning dis- abilities were served.Differences in estimates perhaps abilities include "suchconditions as perceptual disabilities, reflect variations in the definition. brain injury, minimal brain dysfunction, dyslexia, and developmental aphasia." According to the law, learning Characteristics disabilities do not include learning problems that are pri- marily the result of visual, hearing, or motor disabilities; Learning disabilities are characterized by a significant mental retardation; or environmental, cultural, or eco- difference in the child's achievement in some areas, as nomic disadvantage. Definitions of learning disabilities compared to his or her overall intelligence. also vary among states. Students who have learning disabilities may exhibit a Having a single term to describe this category of wide range of traits, incl'iding problems with reading children with disabilities reduces some of the confusion, comprehension, spoken langdage, writing, or reasoning but there are many conflicting theories about what causes ability. Hyperactivity, inattention, and perceptual coordi- learning disabilities and how many there are. The label nation problems may also be associated with learning "learning disabilities" is all-embracing; it describes a syn- disabilities.Other traits that may be present include a drome, not a specific child with specific problems. The variety of symptoms, such as uneven and unpredictable test definition assists in classifying children, not teaching them. performance, perceptual impairments, motor disorders, Parents and teachers need to concentrate on the individual and behaviors such as impulsiveness, low tolerancefor child. They need to observe both how and how well the fustmation, and problems in handling day-to-daysocial child performs, to assess strengths and weaknesses, and interactions and situations. develop ways to help each child learn. It is important to remember that there is a high degree of interr'elationship Learning disabilities may occur in the following aca- and overlapping among the areas of learning. Therefore, demic areas: children with learning disabilities may exhibit a combina- tion of characteristics. 1.Spoken language: Delays, disorders, ordiscrepancies in listening and speaking; These problems may mildly, moderately, or severely 2.Written language: Difficulties with reading,writing, impair the learning process. and spelling; 3.Arithmetic: Difficulty in perforrrdng arithmeticfunc- tions or in comprehending basic concepts; 4.Reasoning: Difficulty in organizing and integrating Smith, S.(1981). No easy answers. New York, NY: thoughts; and Bantam Books. (Available from Bantam, 2451 South 5.Organization skills: Difficulty n organizing_ all facets Wolf Rd., Des Plains, IL 60018. Telephone: 1-800- of learning. 223-6834.)
Educational Implications Organizations
Because learning disabilities are manifested in a vari- Council for Learning Disabilities (CLD) ety of behavior patterns, the Individual Education Program P.O. Box 40303 (IEP) must be designed carefully. A team approach is Overland Park, KS 66204 important for educating the child with a learning disability, (913) 492-8755 beginning with the assessment process and continuing through the development of the LEP. Close collaboration Division of Learning Disabilities among special class teachers, parents, resource room teach- Council for Exceptional Children ers, regular class teachers, and otherswill facilitate the 1920 Association Dr. overall development of a child with learning disabilities. Reston, VA 22091-1589 (703) 620-3660 Some teachers report that the following strategies have been effective with some students who have learning Learning Disabilities Assn. of America (LDA) disabilities: 4156 Library Road Pittsburgh, PA 15234 Capitalize on the student's strengths; (412) 341-1515 Provide high structure and clear expectations; (412) 341-8077 Use short sentences and a simple vocabulary; Provide opportunities for success in a supportive National Center for Learning Disabilities atmosphere to help build self-esteem; 99 Park Avenue Allow flexibility in classroom procedures (e.g., New York, NY 10016 allowing the use of tape recorders for note-taking (212) 687-7211 and test-taking when students have trouble with written language); National Network of Learning Disabled Adults Make use of self-correcting materials, which pro- (NNLD A) vide immediate feedback without embarrassment; P.O. Box 32611 Use computers for drill and practice and teaching Phoenix, AZ 85064 word processing; (602) 941-5112 Provide positive reinforcement of appropriate so- cial skills at school and home; and Orton Dyslexia Society Recognize that students with learning disabilities Chester Building, Suite 382 can greatly benefit from the gift oftime to grow and 8600 LaSalle Road mature. Baltimore, MID 21286-2044 (410) 296-0232 Resources (800) 222-3123 (Toll Free)
Journal of Learning Disabilities. Available frpm Pro-Ed, 8700 Shoal Creek Blvd., Austin TX 78758.Tele- Ills fact sheet is made possible through CooperativeAgreement phone: (512) 451-3246.) itIICGOA30003 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- Silver, L. (1991). The misunderstood child: A guide for ily reflect the views orpolicies of tht Department of Edticati on, nor organi- (2nd ed.). does the mention or trade names, commercial products or parents of children with learning disabilities zations Imply endorsement by the US. Goveinment. New York, NY: McGraw Hill Book Co. (Available - from McGraw Hill Retail, 13311 Monterey Lane, Blue This information Is in the public domain unlessotherwise indi- cated- Readers are encouraged to copy and share it, butplease Ridge Summit, PA 17294.Telephone: (717) 794- credit the National Information Center for Childrenand Youth 5461.) with Disabilities (NICHCY).
UPDATE 11'93 For more information contact NICUCY.
BEST COPY AVAILABLE MISCONCEPTIONS ABOUT PERSONSWITH LEARNING DISABILTIES
MYTH - All students with learning disabilities are brain FACT - Although more students with learning disabilities show evidence of damage to the central nervous system (CNS) damaged. than their nondisabled peers, many of them do not. Many authorities now refer to students with learning disabilities as having CNS dysfunction, which suggests a malfunctioning of the brain rather than actual tissue damage.
MYTH - IQ-achievement discrepancies are easily FACT A complicated formula determines a discrepancy between a student's IQ and his or her achievement. calculated.
MYTH >- Standardized achievement tests are the most FACT - Standardized achievement tests do not provide useful kind of assessment device for teachers of students with much information about why a student has achievement diffi- learning disabilities. culties. Informal reading inventories and formative evaluation measures give teachers a better ideaof the particular prob- lems a student is experiencing.
MYTH > We need not be concerned about the social- FACT Many students with learning disabilities do also emotional well-being of students with learning disabilities develop problems in the social-emotional area. because their problems are in academics.
MYTH The mosr serious problem of children who are FACT Although children who are hyperactive do exhibit their hyperactive is their excessive motor activity. excessive motor activity, most authorities new believe that most fundamental problems lie in the area of inattention.
MYTH - Medication for children with attention-deficit FACT > Some children receive medication who do not disorder is over-prescribed and presents a danger for many need it, but there is little evidence that vast numbers are inap- propriately medicated. Medication can be an important part children. of a total treatment package for persons with attention-deficit disorder.
adulthood. MYTH - Most children with learning disabilities outgrow FACT - Learning disabilities tend to endure into with their disabilities as adults. Even most of those who are successful must learn to cope their problems and show extraordinary perseverance.
BEST COPY AVAILABLE
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Cher, who has always exposed herself Cher still can't spellor to sitting there one day and I justgot up and merciless criticismfor herhairdos,her said, "I'm not going back." understand the words clothes and her men, has recently opened on a billboard. She herself up to further pain and humiliation by Qlesunderstandablethatyou admitting publicly that she suffers from dys- wouldn't lik school If youwre having has trouble dialing the lexia."I'm insecure. about everything.It such a hard time. doesn't take much to shake my confidence to A. Well, I believe that, for themost part, phone and making the bone," she says, and little wonder. The school is a very boring place-forvery bright simplest tasks still baffle her. Her dyslexia change. At the minds, you know? I think what schooldccs age of made her school years a nig.htmareshe half the time is cut out dropped out in Ilth gradeand her acting your creativity and 30 her problemwas ;rust make you fit into society.I don't'think career a struggle. Yet she his successfully school is the place to really learnvery much. managed to establish herself as an diagnosed as dyslexia. actress It's evident if you see what's happening inthe "Sometimes I feelso and is finally, at the age of 40, gaining the countryyou know, there arc so many peo- respect that has eluded her for so long. ple who can't pass a civil serviceexam, or can't read. In Les Angeles, inst=d of using stupid. I don't know Q How dld you feI whn you first the word Walk [cn street signsI, they showa what I'd do if I hada found out that you had dyslexia? person walking, because some people can't A. Suddenly things made a lot ofsense.I read a sign. regular job," shesays. never read in school. The first book I ever Here, for the first time, read was when I was 18 or 19 years old, and Q When was your dyslexia condi- it wits called The Saracen Blade by Franktion fIrst diagnosed? Cher talks about the Yerby. When I was in school, it was really A. When I was 30. difficult. Almost everythinglearned, I had disability that has to learn by listening.I just couldn't keep upQ. Youfound out about it when you caused her such pain. with everybody else. You can be really intel- took Chastity to b tested? ligent. but if you don't have a way of lettingA. Yes. She's very intelligent, but she just people know, you sem really stupid. Myre- did so badly in school, and sheVelS having port aids always said that I was not living such a hard time. Then I sent her toa special up to my potential. Teachers would see that school, which was really a drag, becausea lot I wa.s a bright girl in class, and then I would of the kids in the school had emotional prob- hand in papers that you couldn't read. Also,lems and she doesn't. But she just felt that I could never do the work quickly enough she was stupid because her oralscores were most of the tests were timed. so much higher than her written scores.
CI What were your grades like? Qe What dld you do next? A. They were ve-y.sporadic. I got really bed A. One of the doctors who had tested her grades-1).s and Fs and Csin some class-recommended that I take her to a dysle-xia =, and A's :nd B's in other classes. My iter in Santa Monica. When I went in mother would get exasperated with mesome- there, I said to the lady, "I know Chastity is times: She just could not understand why I really smartshe's just like me." Thewom- could do so well in one class onesemester an said, "What do you mean:" and we start- and fail the nest semester. And I never could ed talking about it, a.n.d.that's whcnwe found understand it either. Some thingswere socut we both had it. difficult. But eventually I kit schoolin the second week of I Ith grade. I just quit.I was Q. Now that Chastity understands the problem, sho molt foul Setter. BY LINDA KONNER A. Yea she feels a lot better. She'snow gc,
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Not really, because it was a tense (fibwell-liked in school for herself, but I also re- can only be hurt in your life by someone so ment. It was terrible.I didn't get the part! member that when Mask came out: hermuch, and then you have to protect yourself friends said, "Oh, Chas, I loved your mom in or it doesn't make any sense. For me to be Q. How do you feel about doing cold read-the movie." You know, lots of her friends around Sonny is like walking into a fire_ "ings for directors now? have Mohawks. Kids are not as judgmental A. I wouldn't do them now.I would neveras adults. So most of Chas' friends think I'm Q. How would you describe the relation- cold read for anybody. Look. inMask [test-really cool becau.st I'm an adult, but I don'tship you had with Sonny? ed.and I k...... ; ..vhat I was doing.It's like, I exactly look like an adult... whatever that's A. It was like I was a black person working saw a show once where they were looking forsupposed to mean. on a plantation for a benevolent boss. With- jap dancers. There was this little boy from As For Elijah ... One day he came homeout your freedom, it doesn't make any differ- Spain. and he needed a job, and he was aand he was really upset. He said, "So-and- ence who your master is. For a long time. I flamenco dancer. He tried to tap dance, but so's grandmother said you're a whore." And acted toward him in a way that was very dif- he couldn't do it.But then, when he didI said. "Well, that's interesting. What did ferent from the way I felt. And I'm sorry I whathe could do.he did it better than all the she base that on?" And he said, "I don'tfeel this wayI would prefer to be absolute- people that were trying out for the tap danc-know, but I'm not going to talk to him any- ly friendly and enjoy being around him.It ing job. So it just wouldn't make sense for more." We talked about it for a long timc I would make my life a lot easier. But I don't me to try to cold read if what thcy wanted tocould tell he was pretty upset. But later, he think I ever knew Sonny at all.First of all, do was see what I did weil. came to the conclusion that he lives with mewhat can you know at 16? Not very much. and he knows what kind of person I am. He But also, he didn't want to share himself. He Q. Now thot there's no pressure on you to realized that this woman was having a rough thought that if I knew about him, I would read, do you ever read for pleasure? Or is time in her life, and that it didn't have much have some kind of power that he just wasn't it still a struggle? to do with him or me. ready,to give up. That's something we all do. A. I read for pleasure constantly. ['rn r=d- but [to be doing that for] 11 years is a long ing four books right now. I'm reading 77,e Q. Does Chastity generally accept you time. I mean, if you can't trust someone... Mammoth Hunters:I read the first twoIlean better than Elijah does? He was 28 when I met him, and he'd been Auei books]. I'm reading TheVampirr Les- A. Yes.I think boys are just so much more trying for 10 years to be a singer. Then, all of ter. I'm reading GoddasandDrama of the vulnerable than girls. Chastity's always had a sudden, in a matter of a year, we became Gifted Child,a psychology book my boy- the most amazing inner strength. She's nev- famous. He said that he knew from the time friend Josh (Donen] gave me. er really liked (other] kids that much; she's he saw me that it was going to happen. But always been around adults and had an adult he was always afraid that if I knew I was Q. How do you feel now that the public kind of philosophy about things. The onlytalented or pretty or any of the other things knows about your dyslexia? thing I can ever remember hcr being really he thought I was, that I would leave him. A. I could care less. upset about lately was when she got into the I've been working on a song for a new album; High School of Performing Arts. Right af- it'sreally autobiographical.I've got one Q. What about your feelings about yourterward the school got all this video equip- verse in there about Sonny he's not going to image in general? ment, and some kids started a rumor that like at alLIt goes: A. The way I dress and the way I look are Chastity got in because I bought all the He stole life and heart and beauty, my sense of expression and creativity; I don't equipment. She was really angry about that. Said he did it for my good. feel like stifling that for anybody. I mein. I But I don't think the way I've led my life has Said he always knew I'd leave him, was going to get a Mohawk haircut one time, interfa-ed with her that much. It might have So he crushed me while he could. and Chastity threw herself against the door. when we were back in California, when I was There's no answers, there's no justim She said. "You know,youshould be doing leaving her father.I know that was a real There's just eycs too blind to cry. this to me. I should be the one that wants a difficult time for hes. It's no wonder I'm the phoenix, Mohawk, and you should be saying no." It's . My salvation that I've died. like, if Cha.s wants to dye her hair green and Q. How dld you explain your breakup purple, it shouldn't make any difTerencit's with Sonny to Oustity? Q. You feel then that he withheld from an expression of who she is.It's like that for A.:Well, until recently--rnaybe a couple ofyou the encouragement you really needed? me too. So I have a molar reputation.It's years agoI never said very much to her A. You know, it was strangehe gave it on amazing what a hairdo can give youl Peopleabout Sonny. I try to be really positive. be- certain levels, like on a work level. He was think I'm really crazy because of the way I cause she felt bad that he hadn't done as well always saying, "You can do it" (about my look.I think that's ... crazy. (as I had] after the breakup. One day shework). Tnat's why we made better (business], was giving me some flak because I didn't in- partners than husband and wife.If we had Q. How do you think your Image affeesvite her father to somethingand I said, only stuck to working together,it would your children? "You know, I've never said anything badhive been great. A. Ithink they're much cooler than mostabout your father and I've never gone into p-eople.I think they're both very proud ofany of the reasons. But you're old cioughQ. What do you think about the whole me. They think I'm outrageous, and they for me to tell you that it's impossible for mcIdea of marriage now? laugh at the way I am sometimes; they get a to be friends with your father, because I justA. Marriage doesn't interest me. It would if kick out of me. don't like him" it was important to someone that I cared about. As something that I'm seeking? I Q. Perhaps theyan understand the way Q. How old was she when you said that? don't know if it works for me, I don't know you drms because you're their mother and A. About l5si. if Im ready to be married. (continued on page 177)
7 tteioct 19s4
BEST COPY AVAILABLE i) 0 relationships are publicized. "I COULDN'T READ Q. What are you most insecure about? UNTIL I WAS Is" A. Everything from my ability as an actress Q. What's your ideal man like? to my ability as a mother to how I look.It connnued from page 174 A. rye just been with the ideal man. His doesn't take much to shakc my confidence to name is Josh Donen, and he's the most fabu- the bone. But thcn I keep coming back. So, Q. Even as you turn 40, even after two lous man I've ever known. He's bright, we're if I'm going to keep coming back. I would marriages? in the same business (he's a movie producer), just like to tell myself once and for all that I'll A. As I was turning 30 I was a lot more we've got everything to talk about, he's hand- be okay, soI don't have to k=p going ready to be married; Iwasmarried (to rock some, he cracks me up constantly, he's a fab- through the drama. singer Gregg Allman]. Marriage sounds fab- ulous father to my kids.There's nothing ulous in theory. But thc kind of work I'm in wrong with him. Even my mother is crazy Q. Do you think your ability to bounce is not exactly noted for long-lasting relation- about him. She says, "Cher, come home to back makes people like you? sh0 of any kind. California. Don't stay irt New York; are you A. Yes. I'm a survivor, and people respect crazy? What's the matter with you?"I've that. You know, I via; about as down and Q. Would you say your work makes you never met anybody like him. He's like a out as anyone can be in my profession (after self-centered? dream man. He's a prince. the TY shows went ofi- the air], and all of a A. I'm certainly self-centered. but I'm really sudden, I just came back to life.I've done \giving in a relationship; while I'm in it, it's Q. So what's the problem? that a whole bunch of times. Also, people very important.I mean, I'm not perfect, but A. His work keeps him stuck in LA.; he has kind of like me in spite of myself. as a partner I think I'm really loving and giv- an extremely demanding job. And whenever ing.It's just that it only lasts so long. I come to New York, I really want to be Q. What do you mean? here_ It's so hard for me to live in Los Ange- A. I'm one of those people that's kind of lik- Q. Does that mean you don't think any- les; I really don't like it there. Also he wants able you just kind of like them.For in- body can sustain a good relationship over to get marriedand that just really scares stance, when I go on theDonahueshow, I a long period of time? me to death. always think. "Oh, these worn= are going to A. Look,Isustained abadrelationship over kill me." And yet, they don't. Part of itis a long period of time. The older I get, the Q. If there were one thing about yourself because I'm not totally full of sh.....I don't less patience I've got for sustaining anything that you could change, what would it be? really hide my mistakmI mean, it would that doesn't work over a long period of time. A. I would not want to be so insecure. That be impossible to try to hide thcm. But I feel If it workedand I'm willing to work on insecurity stifles everything. As I go on in like I have some kind of special dispensation. thingsI would be in it for a long time. But life, I become mort secure in some areas and People like me in spite of the fact that if they I also want to be creative, and I don't know less secure in others that I used to be more saw me walking down the street and I wasn't that creativity necessarily has too much to do secure in.I guess it's a trade-off. Cher, they wouldn't like me at all. with marriage.I also like to spend a lot of time alone.
Q. How do you spend your time alone? A.1 like to rcad.I like to exercise.I like to
write. 1 like the freedom of not having to answer to anybody. You know, I think that being with Sonny did a lot of things that were not so healthy for meI mean, I had to have a reasonable place to go to before I could (get permission from Sonny to] go out of the house. And because of that, I've had a big backlash.I don't want anybody to ask me where I'm goingif I want to go someplace, I really want to do it. Thank God, I have my kids; kids are usually so much more under- standing than husbands. For example, when I wa.s doingMask.I would get up at 5:30 in the morning, and I would work out for an hour until I was picked up to go to the stu- dio,I would come home at 7:30 at night, and PERK UP I would fall into bed.I couldn't give any- A thing to anyone. The kids would come and POTATO sit on the bed, and we'd talksometimes I'd fall asleep talking.I didn't even have that One potato. Two potato. Three potato. Four. When you add Campbell's° Cheddar Cheese Soup, four potatoes become much energy to give them on weekends. It's more than potatoes. Here's a Campbell's recipe that will perk hard to explain that to a man, because he'd up your potatoes: take it personally. I can (11 oz.) Campbell's 2 tbsp. sour cream Condensed Cheddar 1/1 tsp. Dijon mustard Q. Does your wanting to stay single have Cheese Soup 4large baked potatoes anything to do with sexa desire to avoid I cup cooked broccoli flowerets Chopped pimiento Cheddar sexual fidelity? In l'h qt. saucepan over medium heat, stir soup. Stir in' broccoli, sour cream and mustard. Heat thoroughly; stir Cheese A. No. I'm so monogamous it's disgusting. occasionally. Split potatoes: fluff with fork. Serve sauce over I'm not very liberated or New Age; if I find potatoes. Garnish with chopped pimiento. 4 servings. somebody that I really like, I just don't want to be with anybody else.I'm not a dater at CAMPBELL'S SOUP MAKES GOOD FOOD all.I have such a reputation; it's just that my 4.4setats.. foranwiwareaorp*V.P.P4,se-r.`%44-4440,'Vr
BEST COPY AVAILABLE 6 t VIII.Visual Impairments
General Information about Visual Impairments (NICHCY Fact Sheet) Misconceptions about Persons with Visual Impairments
How Not to Help A Person Who is Blind and Lost
Mainstreaming Case History: Troy was Blind
America's Boswell Drives Into the Dark rac: Sneet Number 13 (FS13) 13 NICHCY Nationel Informnation Center for Children and Youth with Disabilities P.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 child. Many children who have multiple disabilities mav also have visual impairments resulting in motor, cognitive, The terms partially sighted, low vision, legally blind, and/or social developmental delays. an,cl totally blind are used in the educational context to describe Etudents with visual impairments. These terms are defined as follows: A young child with visual impairments has little reason to explore interesting objects in the environment and, thus, "Partially sighted" indicates some type of visual may miss opportunities to have experiences and to learn. problem has resulted in a need for special educa- This lack of exploration may continue until learning be- tion; comes motivating or until intervention begins. "Low vision" generally refers to a severe visual impairment, not necessarily limited to distance Because the child cannot see parents or peers, he or she vision. Low vision applies to all individuals with may be unable to imitate social behavior or understand sight who are unable to read the newspaper at a nonverbal cues. Visual disabilities can create obstacles to normal viewing distance, even with the aid of a growing child's independence. eyealasses or contact lenses. They use a cornbina- (ion of vision and other senses to learn, although Educational Implications they may require adaptations in lighting, the size of print, and, sometimes, braille; Children with visual impairments should be assessed "Le2ally blind" indicates that a person has less early to benefit from early intervention programs, when than 20/200 vision in the better eye or a very applicable. Technology in the forma computers and low- limited field of vision (20 degrees at its widest vision optical and video aids enable many partially sighted, point); and low vision, and blind children to participate in regular class Totally blind students, who learn via braille or activities. Large print materials, books on tape, and braille other non-visual media. books are available.
Visual impairment is the consequence of a functional Students with visual impairments may need additional loss of vision, rather than the eye disorder itself.Eye help with special equipment and modifications in the disorders which can lead to visual impairments can include regularcurriculum to emphasize listening skills, communi- retinal degeneration, albinism, cataracts, glaucoma, mus- cation, orientation and mobility, vocation/career options, cular problems that result in visual disturbances, corneal and daily living skills. Students with low vision or those disorders, diabetic retinopathy, congenital disorders, and who are legally blind may need help in using their residual infection. vision more efficiently and in working with special aids and materials. Students who have visual impairments com- Incidence bined with other types of disabilities have a greater need for an interdisciplinary approach and May require greater The rate at which visual impairments occur in individu- emphasis on self care and daily living skills. als under the age of 18 is 12.2 per 1,000. Severe visual impairments (legally or totally blind) occur at a rate of .06 Resources per 1,000. American Foundation for the Blind. (1993). AFB directory of Characteristics services for blind and visually impaired persons in the United States and Carocla (24th ed.). New York, NY: Author. The effect of visual problems on a child's development Curran, E.P. (1988). Just enough to know better (A braille primer). 1 depends on the severity, type of loss, age at which the Boston, MA: National Braille Press. condition appears, and overall functioning level of the Dodson-Burk, B., & Hill, E.W. (1989). An orientation and National Association for Visually Handicapped mobility primer for families andyoung children(Item 22 West 21st Street, 6th Floor 1576). New York, NY: American Fouidationfor the Blind. New York, NY 10010 (212) 889-3141 Ferrell, K.A. (1985). Reach out and teach:Materials for parents of visually handicapped and multr-handicapped young chil- National Braille Association. Inc. (NBA) dren (Item 2084). New York: AmericanFoundation for 1290 University Avenue the Blind. Rochester, NY 14607 (716) 473-0900 Hazekamp, J., & Huebner, K.M. (1989). Programplanning and evaluation for blind and visually impaired students:Na- National Braille Press tional guidelines for educational excellence(Item 155x). 88 St. Stephen Street New York, NY: American Foundation for the Blind. Boston, MA 02115 (617) 266-6160; (1-800) 548-7323 Holbrook, M.C. (Ed.). (in press). Children with 4 \ visual impair- ments: A parents' guide. Rockville, MD: Woodbine. [Tele- National Eye Institute - phone: 1-800-843-7323 (outside DC area); (301) 468-8800 National Institutes of Health (in DC area).) U.S. Department of Health & HumanServices Building 31, Room 6A32 Huebner, K.M.,& Swallow, R.M. (1987). Howto thrive, not just Bethesda, MD 20892 survive: A guide to developing independent life skillsfor (301) 496-5248 blind arid visually impaired children and youth (Item1487). New York, NY: American Foundation for the Blind. National Federation of the Blind, Parents Division do National Federation of the Blind Scott, E., Jan, J., & Freeman, R. (1985). Can'tyour child see? 1800 Johnson Street (2nd ed.). Austin, TX: Pro-Ed. [Available from Pro-Ed,at Baltimore, Iv° 21230 (512) 451-3246.) (410) 659-9314
Organizations National Library Services for the Blind andPhysically Handicapped . American Council of the Blind Parents Library of Congress c/o American Council of the Blind 1291 Taylor Street, N.W. 1515 15th St. N.W., Suite 720 Washington, D.C. 20542 Washington, D.C. 20005 (202) 707-5100; (1-800) 424-8567 (202) 467-5081; (1-800) 424-8666 National Retinitis Pigmentosa Foundation American Foundation for the Blind 1401 Mt. Royal Avenue, Fourth Floor 15 West 16th Street Baltimore, MD 21217 New York, NY 10011 (410) 225-9400; (410) 225-9409 (TT) (212) 620-2000; (1-800) AFBLEND (TollFree Hotline) (1-800) 683-5555 (Toll Free) For publications, call: (718) 852-9873 National Society to Prevent Blindness Blind Children's Center 500 E. Remington Road 4120 Marathon Street Schaumburg, IL 60173 Los Angeles, CA 90029-0159 (708) 843-2020; (1-800) 221-3004 (Toll Free) (213) 664-2153; (1-800) 222-3566
Division for the Visually Handicapped c/o Council for Exceptional Children 1920 Association Drive l'his fact sheet'made' Possible through .COOPerative Ageensent Reston, VA 22091-1589 111-1030A30003 between the Academy for Educational Development and . the 9flict of Special Education Programs, U.S. Department of Ed.nca- (703) 620-3660 -..tion:Tbe contents ofthisPublication do notVercesiarilyreflect the views :Or p011cies of the Department of Education, nordoes mention Of trade National Association for Parents of the Visually names; commercial products or organizations imply endorsement by the U, S. Government. : Impaired, Inc. . . ,. P.O. Box 317 This Information It In the. public domain tmlms otherwise. Indicated. Watertown, MA 02272 Readers are encouraged to copy and share lt, but please credit the (817) 972-7441 National Information Center for Children and Youth with Disabilities (NICTICY).
For more information contact NICIICY. UPDATE 12/93
4 BEST COPY AVAILABLE MISCONCEPTIONS ABOUT PERSONS WITH VISUAL IMPAIRMENTS
MYTH > People who are legally blind have no sight at all. FACT >- Only a small percentage of those who are legally blind have absblutely no vision. Many have a useful amount of functional vision.
M"i TH >- People who are blind have an extra sense that FACT >- People who are blind do not have an extra sense. enables them to detect obstacles. Some can develop an "obstacle sense" by noting the change in pitch of echoes as they move toward objects.
MYTH > People who are blind automatically develop FACT - Through concentration and attention, individuals better acuity in their other senses. who are blind can leorn to make very fine discriminations in the sensations they obtain. This is not automatic but rather represents a better use of received sensations.
MYTH >- People who are blind have superior musical FACT >- The musical ability of people who are blind is not ability. necessarily better than that of sighted people but many people who are blind pursue musical careers as one way in which they can achieve success.
MYTH > Braille is not very useful for the vast majority of FACT >- Very few people who are blind hove learned Braille, people who are blind; it should only be tried as a last resort. primarily due to fear that using Braille is a sign of failure and to an historical professional bias againstBraille. Authorities acknowledge the utility of Braille for people who are blind.
MYTH >- Braille is of no value for those who hove low FACT >. Some individuals with low vision have conditions vision. that 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.
MYTH >- If people with low vision use their eyes too much, FACT >- Only rarely is this true. Visual efficiency can actually their sight will deteriorate. be improved through training and use. Wearing strong lenses, holding books close to the eyes, and using the eyes often cannot harm vision.
MYTH > Mobility instruction should be delayed until ele- FACT >- Many authorities now recognize that even includ- mentary or secondary school. preschoolers can take advantage of mobility instruction, ing the use of a cane.
has drawn up MYTH >- The long cane is a simply constructed, easy to use FACT >- The tlational Academy of Sciences it device. specifications for the manufacture of the long cane and using properly.
MYTH >- Guide dogs take people where they want to go. 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 or obstacles.
9i7ST COPY AVAILABLE 6;) ,..e ; A!'s<1??1,'>... - - W NOT TO HELP-A-PERSON WHO IS-BLINDAND.LOST:-=-)="
When the sighted encounter someone who is lost, their I thanked him, and explained that I needed now to know natural inclination is to ask the person where he or she is exactly whereabouts on Alton Road I was so that I could get headed. As the following entry in the diary of John M. Hull to Boumbrook Road. 'Which side of Alton Road am I on? If (1990) indicates, this question can lead to confusion when the I face that way, am I looking towards Bristol Road or is it person lost happens to be blind. the other way?' 'You live high up Bournbrook Rood, don't you? Well, if GETTING LOST 8 November you toke.the next road to the left you'll be OK.' But which way is 'left'? Does-he mean me to cross the I think it is David Scott Blackhall, in his autobiography The rock: or to stay on this side? At this point, the blind and Way I See Things (London, Baker, 1971), who remarks sighted enter into mutual bafflement. how annoying he fo.und it when people refused to answer When a sighted person is lost, what matters to him or his question about where he was and insisted on asking her is not where he is, but where he is going. When he is him where he was trying to get to.I share this experience. told that the building he is looking for lies in a certain direc- Going home the other night I was turned out of my way tion, he is no longer lost. A sighted person is lost in the by some construction work on one of the footpaths. By sense that he does not know where the building he is look- mistake I turned along a side street, and after a block or so, ing for is. He is never lost with respect to what street he is when I realized I had made a mistake somewhere, I was actually on; he just looks at the street sign on the corner of not sure exactly where I was. There were some chaps work- the block. It is his direction he has lost, rather than his ing on a car parked on the roadside. 'Excuse me', I said. position. The blind person lost has neither direction nor 'Could you tell me please where I am? What is the name of position. He needs position in order to discover di ection. this street?' This is such a profound lostness that most sighted people The chap replied, Where are you trying to get to?' find it difficult to imagine. With what I hoped was a good-humored laugh, I said, 'Never mind aLout that, just tell me, please, what street this SOURCE: From Touching the rock by John M. Hull. Copyright CI is?' 1990 by John M. Hull. Reprinted by permission of Pantheon Books, 'This is Alton Road, You usually go up Bournbrook a division of Random House, Inc., pp. 144-145. Road, don't you? It's just a block further along.'
6i) t 1°P
CASE HISTORY
41(-
TROY 4111bi 'ALTHOUGH I'D BEEN TEACHING Troy may have been born blind,and a dressmaker's wheel and for more than 10 years, I was but when he entered Eileen bar graphs using tiny pinpricks apprehensive about having a Walcik's 7th-grade reading classon heavy braille paper. The blind student in my class. How at Smith Middle School, he school for the blind added the would I adapt my lessons to could see his goal clearlyto bestatistics in braille. meet Troy's needs and my other the same as the other students. I used textured materials to students' needs? How could Troy All his life, Troy had worked make diagrams for Troy. For one participate in all our activities? extra hard to keep up with kidsunit, I made a diagram of rock My state's school for the blind his age. He'd taught himself to layers using a smooth section, would provide braille textbooks skateboard, mastered the one with dots of glue, and one for Troy. But the school didn't drums, and learned music by with tiny pinpricks. provide braille work sheets or ear. Now, at the age of 13, fitting Because Troy couldn't see the supplementary materials, so I in had become even more pictures in our books, I had his had to either send these to the important. WaIcik quickly foundclassmates describe them to him school to be converted to braille that the challenge of helping in detail. Not only did Troy un- or figure out a way to adapt Troy required her to see new derstand the information better, them. And I always needed a ways of doing things. but so did the rest of the class. backup plan in case the materi- Art is an area that's tradition- al's didn't arrive in time. ally closed to blind students. My When I met Troy, I found him students loved illustrating stories to be friendly, outgoing, and ea- we read, and I could seethat ger to learn. He quickly found Troy wanted to try drawing too. his way around, and I could tell When we read The Lion, the by his facial expressions that he Witch, and the Wardrobe, I found was excited to be in school. I had a tape of songs to go with I soon realized that Troy was the book. I gave my students pa- an extremely skillful listener. I per and askedthem to close planned more oral lessons and their eyes, listen, and draw to tests so Troy could work with the flow of the musicall with- the rest of the class. His listen- out peeking. Troy was excited ing skills saved the day once when the other students found when we completed our assign- pictures in his drawing. ments early and the other stu- TROY Throughout that school year, dents asked to read a play. We my class and I learned to look at didn't have a braille copy, but I our world in a new way. Troy asked another student to prompt taught us that, with some extra him, and Troy was able to play a WAS effort, a positive attitude, and a part. His face glowed. little help from friends, a blind student could do anything we Our unit on graphs and dia- 0 grams brought new challenges. BLIND could doand more. But I was able to make this unit tactile so Troy could read the in- Eileen Wokik teoches 6th- crd 7th.grode English formation. I made circle graphs and reading (talented ond ged) al Smith Middle School in Fort Hood, Tex. using heavy-duty aluminum foil lEARNZNG9 3, 0C100ER 6i 4.4% . ',Ate El nonice: krr , %am, SlintEmobairawl yr.
DUDLEY DOUST ON A REMARKABLE PLAYER Boswell has been walking crown darkened fairways since After he had stooped to feel the texture of the grass, and finger shortly after the Second World War. Blinded whena Germon the edge of the cup, Charley Boswell paced with his caddie antitank gun scored a direct hit on his vehicle in the Ruhr, he across the green to his ball. He counted as he went ... 48, was sent back to an American hospital for rehabilitation. A 49, 50 feet. "It'sS. mostly downhill," said his caddie, crouching former gridiron footballer and baseball player, Boswell didn-it to line up the face of Boswell's putter. 'Take off about 10 feet, take easily to pampered, supervised sport. and putt it like a 40-footer." "I tried swim -ning, and it bored me. I tried horseback riding Boswell stroked the ball. It sped across the green, climbed until I rode under a tree and got knorked off. I tried ten-pin and fell, curved, slowed down and dropped with a rattle into bowling, and that wasn't any good eitherI fell over the ball- tbe hole. Boswell grinned: "Did you see that one?" Yes, I had track." He laughed, idly swinging his club as he walked. 'Then seen it. But he hadn't. Charley Boswell is blind. In fact, he is one day this corporal came in and suggested we ploy golf. I one of the most remarkable blind sportsmen in the world and told him to get the hell out of my room." playing off a handicap as low as 12, he has won the United Boswell hod never swung a golf club in his life but, a few States Blind Golfers' Association Championship 17 times. days later, aged 28, he gave it a try: "He handed me a Putting, oddly enough, is one of Boswell's strong depart- brassie. I took six practice swings, and then he teed oneup ments. Given, of course, the fact that his caddie reods the putt, and I hit it dead centre, right out of the sweet spot. I tell you, I his execution is immaculate. "A tip that we blind golfers con was lucky. If I'd missed the ball that first time I would have quit pass on to the sighted player," he said, "I don't worry about golf." There are no false heroics about Boswell. the breoks on a green. Don't try to curb your putt because, as Some holes later he, or rather we, found his ball in a Bobby Jones always said, every putt is a straight putt and let bunker. The bunker shot wos clearly the most difficult shot in the slopes do the work." Boswell's bag. Playing it required him to break two Rules of A few.weeks ago I met Boswell in California, where he was Golf: he not only needed his usual help from someone to line playing a benefit match for the Braille Institute of America. He up his club but, to avoid topping the ball, or missing it alto- had come up from Alabama, where he is the State gether, he had to ground his club in the sand. "Also, I can't Commissioner in the Department of Revenue, a remarkable get fancy and cut across the ball," he said. "I have to swing enough job, and now he was walking to the second teeon a square to the line of flight. I have to play it like an ordinary course in the lush Coachelle Valley. A wind blew down from pitch." the mountains. "Funny thing," he said, "wind is really the only These handicaps, he later pointed out, were in part counter- thing that bothers me. It affects my hearing, and that ruinsmy sense of direction." balanced by the actual advantages of being blind on a golf On the second tee his caddie, who is his home professional course. Boswell, for instance, is never tempted to play a nine- back in Alabama, lined up the face of Boswell's driver and iron when a seven-iron will do the job. "In a match blind play- stepped away. Boswell, careful not to lose this alignment, did ers ploy the course, not their opponents, because we can't see not waggle his clubhead. He paused, setting up some inner what they're dcing anyway," he scid, on the way toa score of rhythm, and swung with the certainty of a sighted player. He 91 which, for urn, was neat but not gaudy. "You know, I was groaned as the ball tailed off into a slice. once playing with Bob Hope, and he said: 'Charley, if you "There are two ways I can tell if I hit a good shot," he said, could see all the trouble on this golf course, you wouldn't be frowning. "I can feel it through the clubhead and,more impor- playing it.' And I suppose he was right." tant, I finish up high on my follow-through. Come on, let's walk. I can't stand golf cartsthey bother my judgment of SOURCE: Dudley Doust, Sunday Tmes, London, February 6, 1977. distance." Reprinted by permission.
BEST COPYAVAIIABLE 6 IX. Hearing Impairments
- Deafness: A Fact Sheet (NICD Sheet)
- Misconception about Persons with Hearing Impairments
- Up To The Challenge f
416-02,11v, DEAFNESS: A FACT SHEET
This fact sheetwas written cooperatively by the National Informationoenter on Deafness and the National Association of the Deaf.
Introduction distortion accompanying some forms ofsen- sorineural hearing loss is so severe that successful An estimated 21 million Americans have some use of a hearing aid is impossible. degree of hearing impairment. Hearing impairments affect individuals of all ages, and may occur at any Mixed hearing losses are those in which the time from infancy through old age. The degree of loss problem occurs both in the outer or middle and the may range from mild to severe. This variability in age inner ear. at onset and degree of loss plus the fact that each individual adjusts differently to a loss of hearing A central hearing loss results from damage or im- makes it impossible to define uniformly the conse- pairment to the nerves or nuclei of the central nervous quences of a loss. system, either in the pathways to the brain or in the brain itself. Although the National Center for Health Statistics Among the causes of deafness are heredity. acci- through its Health Interview Survey has been able to dent, and illness. An unborn child can inherit hearing Istimate the number of people with hearing impair- loss from its parents. In about 50 percent of all cases ments, there have been no recent national surveys of deafness, genetic factors are a probable cause of which can be used to estimate the number of people deafness. Environmental factors (accident, illness, who are deaf. As a result, estimates for the number ototoxic drugs, etc.) are responsible for deafness in of deaf people range anywhere from 350,000 to two the remaining cases. Rubella or other viral infections million. contracted 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- Audiological/Medical information fect hearing. Illness or infection may cause deafness in young children. Constant high noise levels can There are four types of hearing loss, each of which cause progressive and eventually severe sen- can result in different problems and different possi-. sorineural hearing loss, as can tumors, exposure to bilities for medical and nonmedical remediation. explosive sounds, heavy medication, injury to the skull or ear, or a combination of these factors. CoriductIve hearing losses are caused by diseases Central hearing loss may result from congenital or obstructions in the outer or middle ear (the con- brain abnormalities, tumors or lesions of the central duction pathways for sound to reach the inner ear). nervous system, strokes, or some medicationsthat Conductive hearir.g losses usuany affect evenly all specifically harm the ear. frequencies of hearing and do not result in severe losses. A person with a conductive hearing loss usual- The detection and diagnosis of hearing impairment ly is able to use a hearing aid well, or can be helped have come a long way in the last few years. It is now medically or surgically. possible to detect the presence of hearing lossand evaluate its severity in a newborn child. Whilemedi- Sensorineural hearing losses result from damage cal and surgical techniques of correctingconductive to the delicate sensory hair cells of the inner ear or hearing losses have also improved, medical correc- the nerves which supply it. These hearing losses can tion for sensorineural hearing loss has been moreelu- range from mild to profound . They often affect cer- sive. Current research on a cochlear implantwhich tain frequencies more than others. Thus, even with provides electrical stimulation to the inner earmay amplification to increase the sound level, the hear- lead to important improvements in the abilityto med- loss. ing impaired person perceives distorted sounds. This ically correct profound sensorineural hearing
GIlaudat Unhlorsity 1464, 1967. 19% Educational Implications At the secondary school level, students may work toward a vocational objective or follow a more aca- Deafness itself does not affect a person's intellec- demic course of s-tudy aimed at postsecondary edu- al capacity or ability to learn.:-Yet, deaf children cation at a regular college, a special college program generally require some form of special schooling in for deaf students (such as Gallaudet University or the order to gain an adequate education. National Technical Institute for the Deaf) or one of the 100 or more community colleges and technical Deaf children have unique communication needs. schools that have specialprovisionsfor deaf Unable to hear the continuous, repeated flow of lan- students. guage interchange around them, deaf children are not -aeitomatically exposed to the enormous amounts of Communication: Some Choices -..----language stimulation experienced by hearing children .Zduring their early years. For deaf children, early, con- Communication is an important component of ° sist6nt, and conscious use of visible communication everyone's life. The possible choices for communica- modes (such as sign language, fingerspelling, and tion involve a variety of symbol systems. For exam- Cued Speech) and/or amplification and aural/oral ple, you may communicate in English through speak- training can help reduce this language delay. Without ing and writing. Despite your skills, you probably can- such assistance from infancy, problems in the use of not communicate with someone whose only language English typically persist throughout the deaf child's is Chinese, even though that person also speaks, school years. With such assistance, the language reads, and writes quite fluently. learning task is easier but by no means easy. In the United States, deaf people also use a vari- This problem of English language acquisition af- ety of communication systems. They may choose fects content areas as well. While the academic lag among speaking, speechreading, writing, and manu- may be small during the primary grades, it tends to al communication. Manual communication is a gener- be cumulative. A deaf adolescent may be a number ic term referring to the use of manual signs and of grade levels behind hearing peers. However, the ex- fingerspelling. tent to which hearing impairment affects 'school chievement depends on many factorsthe degree American Sign Language .nd.type of hearing loss, the age at which it occurred, American Sign Language (ASL) is a language the presence of additional handicaps, the quality of whose medium is visible rather than aural. Like any the child's schooling, and the support available both other language, ASL has its own vocabulary, idioms, at home and at school. grammar, and syntaxdifferent frr:m English. The elements of this language (the individual signs) con- Many deaf children now begin their education be- sist of the handshape, position, movement, and orien- tween ages one td three years in a clinical program tation of the hands to the body and each other. ASL with heavy parental involvement. Since the great also uses space, direction and speed of movements, majority of deaf childrenover 90 percentare born and facial expression to help convey meaning. to hearing parents, these programs provide instruc- tion for parents on implications of deafness within the Fingerspelling family. By age four or five, most deaf children are en- When you spell with your fingers, you are in effect rolled in school on a full-day basis. Approximately "writing in the air." Instead of using an alphabet writ- one-third of school-age deaf children attend private ten on paper, you are using a manual alphabet, that or public residential schools. Some attend as day stu- is, one with handshapes and positions correspond . dents and the rest usually travel home on weekends. ing to each of the letters of the written alphabet. Two-thirds attend day programs in schools for the deaf or special day classes located in regular 8chools, Conversations can be entirely fingerspelled. Among or are mainstreamed into regular school programs. deaf people, however, fingerspelling is more typical- Some rr ainstreamed deaf children do most or all of ly used to augment American Sign Language. Proper their schoolwork in regular classes, occasionally with names and terms for which there are no signs are the help of an interpreter, while others are main- usually fingerspelled. In the educational setting, the streamed only for special activities or for one or two use of fingerspelling as the primary mode of commu- classes. nication in combination with spoken English is kno..vn as the Rochester method. In addition to regular school subjects, most pro- grams do special work on communication arid lan- Manual English guage development. Class size is often limited to When the vocabulary of the American Sign Lan- approximately eight children to give more attention guage and fingerspelled words are presented:n to the children's language and communication needs. English word order, a 'pidgin' results. Pidgin Sign En- BEST COPY AVAILABLE glish (PSE) is neither strictly English nor ASL, but voice the words 'kite,"height,"night.' You'llsee combines elements of both. almost no changes on your lips to distinguish among A number of systems have recently been devised those three words. Then say the following thraQ to assist deaf children in learning English. These sys- words'maybe,"baby,"pay me.' They look exactly tems supplement some ASL signs with invented signs alike on the lips. that correspond to elements of English words (plurals. Some deaf people become skilled speechread.rs. prefixes. and suf fixes. for example). There is usually especially if they can supplement what they see with a set of rules for word (sign) formation within the par- some hearing. Many do not develop great skill at system. These systems are generically known speechreading, but most deaf people do speechrad ticular.as manually coded English or manual English sys- to some extent. Because speechreaaing requiras tems. The two most commonly used today are Sign- guesswdrk, very few deaf people rely on speechrd- Ing Exact English and Signed English. While each of ing alone for exchanges cif important information. these systems was devised primarily for use by par- Cued Speech erlts and teachers in the educational setting, many Cued Speech is a system of communication in orthe invented and initialized signs from their lexi- which eight hand shapes in four possible positions cons are filtering into the vocabulary of the general supplement the information visible on the lips. The deaf community. hand "cue" signals a visual difference between sounds that look alike on the lipssuch as /pi. ib/. Oral Communication /m/. These cues enable the hearing impaired person' This term denotes the use of speech, residual hear- to see the phonetic equivalent of what others hear. ing, and speechreading as the primary means of com- It is a speech-based method of communication aimed munication for deaf people. at taking the guesswork .out of speechreading. The application of research findings and techno- Simultaneous Communicat'on logical advances through the years has led to refine- This term denotes the combined use of speech. ments In the rationale for and approach to teaching signs, and fingerspelling. Simultaneous communica- speech to deaf children. Several findings are pertinent tion offers the benefit of seeing two forms of a mes- here. Deaf children may actually have functional sage atthe same time. The deaf individual residual hearing. The speech signal is redundant. speechreads what is being spoken and simultaneous- Since it carries excess information, it is not neces- ly reads the signs and fingerspelling of the speaker. sary to hear every sound to understand a message. For language learning to be successful with.deaf chil- Total Communication dren (no matter what the educational approach), pro- Total Communication is a philosophy which implies grams of early intervention must take place during the acceptance and use of all possible methods of corn- critical language-learning years of birth through 6. munication to assist the deaf child in acquiring lan- Hearing screening procedures that accurately detect guage and the deaf person in understanding. hearing impairments in very young children make it Historically, proponents of particular systems have possible to fit hearing aids and other amplification often been at odds with proponents of other systems devices and to introduce auditory and language train- or modes. Thereisincreasing consensus that ing programs as soon as the problem is detected. whatever system or systems work best for the in- Almost all auditory approaches today rely heavily dividual should be used to allow the hearing impaired on the training of residual hearing. The traditional au- person access to clear and understandable commu- ditory/oral approach trains the hearing impaired child nication. to acquire language through speechreading (lipread- ing), augmented by the use of residual hearing, and sometimes vibro-tactile cues. The auditory/verbal ap- Deaf Adults in Today's Society proach (also called unisensory or acoupedic-method) The deaf adult population in the United States is teaches children to process language through ampli- composed both of individuals deaf since early child- fied residual hearing, so that language is learned hood and individuals who lost their hearing later in through auditory channels. life. People who were deafened as adults, or after the age of 18, are sometimes calledpost-vocationally Speechreading deaf. Having already embarked on their careers, these Recognizing spoken words by watching the speak- people may have serious problems both personally er's lips, face, and gestures is a daily challenge for and professionally adjusting to their hearingloss. all deaf people. Speechreading is the least consistent- People who were deafened prior to age 18 mayhave ly visible of the communication choices available problems not only with English language skills,but to aeaf people; only about 30 percent of English also, because of fewer opportunities for interaction sounds are visible on the lips, and 50 percent are with hearing people in pre-work settings, they maybe nomophonous, that is, they look like something else. less well prepared for interpersonal relationshipsthey Try it for yourself. Look in a mirror and 'say' without encounter in the job market. y BEST COPY AVAILABLE Educational Institutions Some Special Services Schools for deaf students have trabitionally played Numerous social service agencies extend their pro- nn important role in advancing the welfare of deaf gram services to deaf clients. In addition, various eople through education of degf students and pub- agencies and organizationseither related to deaf- lic information efforts about the capabilities and ac- ness or to disability in generalprovide specific serv- complishments of deaf people. Two national ices to deaf people. Among these special services are institutions each have enrollments of over 1.000 deaf the following: students. Captioned Films for the Deaf Gallaudet University A loan service of theatrical and educational films 800 Florida Ave. NE captioned for deaf viewers.-Captioned Films for the Washington, DC 20002-3625 Deaf is one of the projects funded by the Captioning and Adaptations Branch of the U.S. Department of Education to promote the education and welfare of Nalional Technical Institute for the Deaf deaf people through the use of media. This branch Rochester Institute of Technology also provides funds for closed-captioned television 1 Lomb Memorial Drive programs, including the live-captioned ABC-TV news. Rochester, NY 14623 Registry of Interpreters for the Deaf, Inc. For descriptions of the more than 100 postsecond- A professional organization, RID maintains a na- ary programs for deaf students at community colleges tional listing of individuals skilled in the use of Ameri- and technical schools around the country, order a can Sign Language and other sign systems and copy of College and Career Programs for Deaf Stu- provides information on interpreting and evaluation dents for $12.95 from: and certification of interpreters for deaf people.. State Departments of Vocational Rehabilitation College and Career Programs Each state has specific provisions for the type and Center for Assessment and Demographic Studies extent of vocational rehabilitation service, but all pro- 800 Florida Ave. NE vide vocational evaluation, financial assistance for Washington, DC 20002-3625 education and training, and job placement help. Telecommunications for the Deaf, Inc. Special Devices for Deaf People TDI publishes an international telephone directory of individuals and organizations who own and main- Technology and inventiveness have lead to a num- tain TDDs (telecommunications devices for deaf peo- ber of devices which aid deaf people and increase ple) for personal or businuss use. convenience in their daily lives. Many of these devices are commercially available under different trade names. Contributors to the original fact sheet: Telecommunications Devices for Deaf People Roger Beach, Ph.D., Asst. Professor, Department of (TDDs) are mechanical/electronic devices which ena- Counseling, Gallaudet University. ble people to type phone messages over the tele- phone network. The term TDD is generic and replaces Bernadette Kappen, Ph.D.. Asst. Principal, Overbrook the earlier term TTY which refers specifically to School for the Blind, Philadelphia, PA. teletypewriter machines. Telecaption adapters, some- times called decoders, are devices which are either William McFarland, Ph.D., Director of Audiology, Oto- added to existing television sets or built into.certain logic Medical Group, Los Angeles, CA. new sets to enable viewers to read dialogue and nar- of Edu- rative as captions (subtitles) on the TV screen. These Philip Schmitt, Ph.D., Professor, Department captions are not visible without .such adapters. cation, Gallaudet University. Signalling Devices which add a flashing andlor Ben M. Schowe; Jr.,Ph.D., Learning Resources vibrating signal to the existing auditory signal are Center, MSSD, Gallaudet University. popular with hearing impaired users. Among devices using flashing light signals are door "bells," tele- Leticia Taubena-Bogatz, M.A., Teacher, KDES.Gal- phone ring signallers, baby-cry signals (which alert laudet University. the parent that the baby is crying), and smoke alarm Infor- systems. Alarm clocks may feature either the flash- Revised by Loraine Diiletro, Director, National ing light or vibrating signal. mation Center on Deafness, Gallaudet University
t) O. Suggested Readings
Javis, H. and Silverman, R.S., (1978). Hearing and Spradley, T.S.; and Spradley, J.P. (1978). Deaf Like Me. Deafness (4th ed.) New York: Holt, Rinehart and Washington, DC: Gallaudet University Press. Winston. Directory of Services Freeman. R., Carbin, C.F. and Boese, R., (1981). Can't Your Child Hear? A Guide for Those Who Care The April issue of the American Annals of the Deaf About Deaf Children. Baltimore: University Park is a directory of the various programs and services 7". Press. for deaf persons in the United States. Copies of this reference may be purchased from: Ganilon, J., (1981). Deaf Heritage. Silver Spring, MD;
. National Association of the Deaf. American Annals of the Deaf Gallaudet University Katz, L., Mathis, S.; and Merrill, E.C. Jr., (1978). The KDES, PAS 6 Deaf Child in the Public Schools: A Handbook 800 Florida Ave. NE for Parents of Deaf Children (2nd ed.). Danville, Washington, DC 20002-3625 IL: Inte'rstate Printers and Publishers. Additional Information Mindel, E.; and Vernon, M., (1971). They Grow in Si- lence: The Deaf Child and his Family. Silver If you have specific questions that were not an- Spring, MD: National Association of the Deaf. swered by this fact sheet, please contact either the National Information Center on Deafness, Gallaudet Moores, D,(1987). Educating the Deaf: Psychology, University, Washington, DC 20002, or the National Principles, and Practices (3rded.).Boston: Association of the Deaf, 814 Thayer Avenue, Silver Houghton Mifflin Co. Spring, MD 20910. Jgden,P.; and Lipsett, S.,(1982). The Silent Garden: The National Information Center on Deafness Understanding the Hearing Impaired Child. New (NICD) is a centralized source of information on all York City: St. Martin's Press. aspects of deafness and hearing loss, including edu- cation of deaf children, hearing loss and aging, Schlesinger. H.; and Meadow, K. (1974). Sound and careers in the field of deafness, assistive devices and Sign: Childhood Deafness and Mental Health. communication with hearing impaired people. Berkeley: University of California.
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
FACT - Although it is impossible to predict the exact con- MYTH Deafness is not as severe a disability as blind- sequences of 6 disability on a person'sfunctioning, in gener- . ness. al, deafness poses more difficulties in-adjustment than does blindness. This is largely due to the effects hearing loss can have on the ability to understand and speak oral language.
MYTH - It is unhealthy for people who aredeaf to social- FACT =.- Many authorities now recognize that the . phenomenon of a Deaf culture is natural and should be ize almost exclusively with others who aredeaf. encouraged. In fact, some are worried that too much main- streaming will diminish the influence of theDeaf culture,
FACT - Lipreading refers only to visual cues arisingfrom MYTH >. In learning to understand what is beingsaid to who are hearing impaired them, people with hearing impairment concentrate onreading movement of the lips. Some people not only read lips, but also takeadvantage of a number of lips, other visual cues, such as facial expressions and movementsof the jaw and tongue. They are engaging in what isreferred to as speechreading.
Speechreading is extremely difficult to learn, and MYTH >>- Speechreading is relatively easy to learnand is FACT hearing impaired actually become used by the majority of people with hearing impairment. very few people who are proficient speechreaders.
ASL is a true language in ih ownright with its own MYTH American 'Sign Language (ASO is a loosely struc- FACT tured group of gestures. set of grammatical rules.
ASL can convey any level of abstraction. MYTH ASL can convey only concrete ideas. FACT
favor of FACT - Some within the Deaf communiiyhave voiced the MYTH - People within the Deaf community are in for many stu- mainstreaming students who are deaf into regularclasses. opinion that regular classes are not appropriate dents who are deaf. They point to a needfor a critical mass of students who are deaf in order to have effectiveeducational procrams.
Research has demonstrated that childrenwho are MYTH Families in which both the child and the parents FACT deaf who have parents who ore also deaffare better in a num- bre deaf are at a distinct disadvantagecompared to families ber of academic and social areas. Authoritiespoint to the par- in which the parents are hearing. ents' ability to communicate withtheir children in ASL as a major reason for this advantage.
7 a Discrimination is a common problem for minority with ease of communication and compatibility =n- groups. Deaf people as member.s of a minority group, couraged by shared experiences as deaf individuals, experience their share of discrimination. Deaf people leads to socializing with other deaf individuals in as a group are underemployed. Together with mem- maturity.. Many deaf people (80 percent) tend to marry )ers of other minority and disabled groups, deaf peo- other deaf people; most of their children (approxi- ple are working to change attitudes which have given mately 90 percent) are hearing. them jobs .but inadequate advancement opportu- nities. The Deaf Community In the United States, deaf people work in almost Because the problem in dealing with the hearing every occupational field. Some have become doctors, world is one of communication, deaf people tend to dentists, lawyers, and members of the clergy. A num- socialize together more than do people with other dis- ber of deaf people enter careers within the field of abilities. However, members of the deaf community deafness.Thirteen hundred teachers of deaf students in have contacts with other people, too. Some are ac- theVnited States are themselves hearing impaired in- tive members of organizations of hearing people. dividuals. In addition, there are deaf administrators, Some deaf people move freely between hearing and psychologists, social workers, counselors, and voca- deaf groups, while other deaf people may have almost tional rehabilitation specialists. Deaf people drive no social contact with hearing people. A few deaf peo- cars and hold noncommercial pilot's licenses and ple may choose to socialize only with hearing people. pursue the same leisure time interests as everyone While it is possible to find deaf individuals in ev- else. ery section of the United States, there are major con- Many deaf young people have attended school with centrations of deaf people in the larger metropolitan deaf classmates. This educational pattern, coupled areas of the East and West coasts..
Organizations of and for Deaf People needs of deaf adults (Oral Deaf Adults Section) and Clubs and organizations of deaf people range in parents (International Parent Organization). purpose from those with social motives (watching American Deafness and Rehabilitation Association captioned films, for example) to those with charita- ble aims. Organizations offer deaf people the oppor- P.O. Box 55369 Little Rock, AR 77225 tunity to pursue a hobby (athletics, drama) or civic commitment (political action) on the local, regional (501) 663-4617 (V/TDD) or national level. Local or state associations of deaf An interdisciplinary organization for professional and people may be affiliated with the National Associa- lay persons concerned with services to adult deaf tion of the Deaf. The Oral Deaf Adults Section of the people, ADARA sponsors workshops for state re- Alexander Graham Bell Association for the Deaf has habilitation coordinators. local chapters that provide social opportunities for deaf people who favor oral communication. The Na- American Society for Deaf Children tional Fraternal Society of the Deaf provides insur- 814 Thayer Avenue ance and supports social and charitable functions. Silver Spring, MD 20910 It has 120 divisions throughout the United States and (301) 585-5400 (V/TDD) Canada. .Composed of parents and concerned professionals, A few of the 'more than 20 national organizations ASDC provides information, organizes conventions, of and for deaf people in the United States are briefly and of fers training to parents and families with chil- described in the following list. Many of these organi- dren who are hearing impaired. zations publish newsletters, magazines, or journals. Add to these the publications developed by clubs and National Association of the Deaf schools for the deaf (for students and alumni)land it 814 Thayer Avenue is possible to identify 400 publications aimed at a Silver Spring, MD 20910 readership within the deaf community. (301) 587-1788 (V/TDD) Alexander Graham Bell Association for the Deaf With 50 state association affiliates and an aggregate 3417 Volta Place, NW membership exceeding 20,000, the NAD is a con- Washington, DC 20007 sumer advocate organization concerned aboutand in- (202) 227-5220 (V/TDD) volved with every area of interest affecting life oppor- A private, nonprofit organization serving as an infor- tunities for deaf people. It serves as a clearinghouse mation resource, advocate, publisher, and conference of information on deafness, offers for sale over20 organizer, the Alexander Graham Bell Association is books on various aspects of deafness, andworks committed to finding more effective ways of teach- cooperatively with other organizations representing ing deaf and hard of hearing people to communicate both deafness and other disabilities onmatters of orally. Sections within the organization focus on the common concern. Deaf pitcher doesn't let disability stand in way of success Hitters and pitchers look for them. Catchers and coaches give them. Everyone tries to steal them. Signs are as much a part of the game of baseball as the bat and ball. And in a society that does not always accommodate the hearing impaired, baseballwith its endless parade of signs and gesturesis an oasis where the hearing and deaf alike attend on equal footing. Aaron Farley is deaf. He also happens to have been raised on baseball. The name given at birthAaron (as in Hank) Matthew (as in Eddie, only without the 's') Farley (as in Aaron's father Bob, big Braves' fan)left little doubt that baseball would constitute a huge part of his life. . Make no mistake about it, when Farley takes the mound in this weekend's 17-18 year old Babe Ruth state tournament in Purcellville, the 18-year-old C.B. Baker all-star will be just another baseball player. "Baseball is one of those beautiful sports that rely so much on symbols," said Bob Farley, who also serves as all-star coach. 'When the game starts we all speak a different lan- guage, anrvay." If baseball is unique in that sense, then it owes a good deal to deaf individuals such as William Hoy. An act so cen- PROGRESS PHOTO bY MATT GENTRY tral to the national pastimethe umpire's animated strike Aaron Farley of the C. B. Baker League All-Star team has callwas prompted by Hoy, a turn-of-the-century National not let deafness keep him from enjoying success as a League outfielder, who required hand signals to know if the pitcher. The 18-year-old is 6-0 this summer (1992) in regu- pitch was a ball or a strike. lar season and tournament play. The symbolic code that has developed in the years since is a language Farley probably understands better than most. In last weekend's District 5 tournament, Farley added two Born profoundly deafthe most severe degree of hearing more winsincluding Sunday's 12-6 championship victory impairmentFarley is capable of hearing high-decibel to help put the Charlottesville squad in today's first-round sounds like thunder, but little else. So he compensates with game against the District 7 champions. eyes. Farley confidently states that no one on the playing field On the subject of stats, try this one: 3.60. Not ERA, but sees as much as he does. His father doesn't remember him GPA. In June, Farley graduated with honors from ever missing a sign. Charlottesville High School and will attend Rochester (N.Y.) His own safety, in fact, requires that Farley rigidly adhere Institute of Technology this fall with plans to major in to the proverbial commandkeep your eye on the ball. computer science and math. "He has to focus and concentrate on the entire game," A message blackboard in Farley's bedroom frequently said the elder Farley. "I don't know if it makes him better, but carries this admonition from his father: "Most limitations are it sure makes him tired." self-imposed." The son has token the saying to heart. Moreover, it makes him intensely competitive. As one not Consequently, Aaron Farley has not allowed his disability to distracted on the field, he expects nothing less from his team- get in the way of on- or off-field achievement. mates. "I don't want to make o mistake, I don't want my He rejects the notion, however, that he is any sort of role teammates to make a mistcke," Aaron said. "I want to win." model, but the message is clear: Being deaf is no excuse not Win he has. During the C.B. Baker regular season, Farley to participate, or succeed. posted a perfect 4-0 record for champion Puritan, the best mark in the league. He was equally successful at the plate SOURCE: The Daily Prog-ess, July, 17, 1992, pp. C1 , C3. with a .360 batting average. Copyright 0 1992. Reprinted with permission.
77 X Speech and Language Disorders
- General Information about Speeca and Language Disorders (NICHCY Fact Sheet)
- Misconceptions about Persons with Communication Disorders The Manual Alphabet
- Practice Learning Signs . ..- Z.;; s.3 NICHCY National Infor2nation Center for Children and Youth with Disabilities P.O. Box 1492, Washington, D.C. 20013-1492 1-800495-0285 (Toll Free)(202) 416-0300 (Local, Voice/77) SpecialNet User Name: NICHCY " SCAN User Name: NICHCY
General Information About SPEECH AND LANGUAGE DISORDERS
Definition they may be difficulties with the pitch, volume, or quality of the voice.There may be a combination of several I 'Speech and language disorders refer to problems in problems. People with speech disorders have trouble usina I communication and related areas such as oral motor func- some speech sounds, which can also be a symptom of a tion. These delays and disorders range from simplesound delay. They may say "see" when they mean "ski" or they substitutions to the inability to understand or use language may have trouble using other soundslike "I" or "r". or use the oral-motor mechanismfor functional speech and Listeners may have trouble understanding what someone feeding. Some causes of speech and languagedisorders with a speech disorder is trying to say. People with voice include hearing loss, neurological disorders, braininjury, disorders may have trouble with the way their voices mental retardation, drug abuse, physical impairmentssuch sound. as cleft lip or palate, and vocalabuse or misuse. Frequently, however, the cause is unknown. A language disorder is an impairment in the ability to understand and/or use words in context, both verbally and Incidence nonverbally. Some characteristics of language disorders include improper use of words and their meanings,inability grammatical patterns, re- One quarter of the students served in the public schools' to express ideas, inappropriate tt special education programs (almost 1 millionchildren in duced vocabulary, and inability to follow directions.One the 1988-89 school year) were categorized asspeech or or a combination of thesecharacteristics may occur in language impaired. This estimate does not includechildren children who are affected by language learningdisabilities who have speech/language problems secondary toother or developmental languagedelay. Children may hear or conditions such as deafness. Language disorders maybe see a word but not beable to understand its meaning. They related to other disabilities such as mentalretardation, may have trouble gettingothers to understand what they are autism, or cerebral palsy. It is estimated thatcommunica- trying to communicate. tion disorders (including speech, language, andhearing disorders) affect one of every 10 people in theUnited Educational Implications S tates. Because all communication disorders carrythe poten- Characteristics tial to isolate individuals from their social andeducational surroundings, it is essential to findappropriate timely delayed when intervention. While many speech andlanguage patterns A child's communication is considered child's the child is noticeably behind his orher peers in the can be called "babytalk" and are part of a young Sometimes a normal development, theycan becomeproblems if they are acquisition of speech and/or language skills. in (understanding) than not outgrown as expedted.In this way an initial delay child will have greater receptive can be- expressive (speaking) language skills, but this is notalways speech and language or an initial speech pattern difficulties in learning. the case. come a disorder which can cause Because of the way the brain develops,it is easier to learn before the age of5. Speech disorders refer to difficulties producingspeech language and cprnrnunication skills might be When children have muscular disorders,hearing problems sounds or problems with voice quality. They lan- characterized by an interruption in the flow orrhythm of or developmentaldelays, their acquisition of speech, speech, such as stuttering, which is calleddysfluency. guage, and relatedskills is often affected. Speech disorders may be problems with the waysounds are formed, called articulation or phonologicaldisorders, or Speech-language pathologists assistchildren who have Cleft Palate Foundation communication disorders in various. ways.They provide 1218 Grandview Ave. individual therapy for the child; consultwith the child's University of Pittsburgh :cher about the most effective ways tofacilitate the Pittsburgh, PA 15211 412-481-1376; 800-242-5338; 800-243-5338 (in PA) uild' s communication in the Classseti-ing; and work closely with the family to develop goals andtechniques for effec- American Speech-Language-Hearing Association tive therapy in class and at home.Technology can help children whose physical conditions makecommunication (ASHA) difficult. The use of electroniccommunication systems 10801 Rockville Pike Rockville, MD 20852 allow nonspeaking people andpeople with severe physical 301-897-5700 (V/1-1); 800-638-8255 disabilities to engage in the give and take ofshared thought. Learning Disabilities Association of America (LDA) Vocabulary and concept growthcontinues during the 4156 Library Road years children are in school.Reading and writing are taught Pittsburgh, PA 15234 and, as students get older, theunderstanding and use of 412-341-1515; 412-341-8077 language becomes more complex.Communication skills education experience. Speech and/or are at the heart of the Division for Children with CommunicationDisorders language therapy may continuethroughout a student's c/o Council for Exceptional Children(CEC) school year-either in the form ofdirect therapy or on a consultant basis. The speech-languagepathologist may 1920 Association Drive Reston, VA 22091-1589 assist vocational teachers andcounselors in establishing communication goals related to thework experiences of 703-62073660 students 'and suggest strategies that areeffective for the National Easter Seal Society important transition from school toemployment and adult 70 East Lake Street life. Chicago, IL 60601 312-726-6200; 312-726-4258 (11) Communication has many components.All serve to world around them, 800-221-6827 (Calls outside IL) increase the way people learn about the (For information about services forchildren and youth.) utilize knowledge and skills, andinteract with colleagues, family, and friends. Scottish Rite Foundation Resources Southern Jurisdiction, U.S.A., Lnc. 1733 Sixteenth Street, N.W. Bernthal, I.E. & Bankson, N.W. (1993).Articulation and Washington, DC 20009-3199 phonological disorders (3rd ed).Englewood Cliffs, 202-232-3579 NJ: Prentice Hall. (Telephone:1-800-947-7700.) Trace Research and DevelopmentCenter Beukelman, D.R., & Mirenda, P.(1992). Augmentative University of Wisconsin - Madison and alternative communication:Management of se- S-151 Waisman Center vere communicationdisorders in children and adults. Madison, WI 53705-2280 Baltimore, MD: Paul H. Brookes.(Telephone: 1-800- 608-262-6966; 608-263-5408 (TI) 638-3775.)
Human communica- Shames, G.H., &Wiig, E.H. (1990). 'I Thli fact sheet Ls 'madeiossible through CoO:perailieA.gt:iement tion disorders: An introduction(3rd ed.). Columbus, 011030A36003 beec the Acaderdy f or ErhicationalDereIoPment and Of this pnblica- OH: Men ill. (Contact MacmillanPublishing at 1-800- !. the °Mei ofSpecialEducation Programs. TEe content's --F:Alon do not ittceitsit:11Y reflect the iielssorpolkies ot the Deliartment of 257-5755.) ,1Educationi.por ddeif mentioit.c ,. 'I! Organizations ,Thfs Informatlim ii In the public domainnale:Othviseindicate& the Readers are encouraged to'COpy andsh..ie it; but please 'credit Alliance for Technology Access NaUo nal Information Center torChildren and Youthleith Disabilities 1128 Solano Avenue Albany, CA 94706 UPDATE 17293 (510) 528-0747 For more information contactNICHCY. (3 0 BEST COPY AVAILABLE MISCONCEPTIONS ABOUT PERSONS WITH COMUNICATION DISORDERS MYTH >- Children with language disorders always have FACT > It is possible for a child to have good speech and talks; however, most .speech difficulties as well. yet not make any sense when he or she children with language disorders have speech disorders as well. is MYTH s- Individuals with communication disorders always FACT > Some children with communication disorders are have emotional or behavioral disorders or mentalretardation. normal in cognitive, social, and emotional development. MYTH - How children learn language is now well under- FACT Although recent research has revealed quite a lot about the sequence of language acquisition and has led to stood. theories of language development, exactly hew children learn language is still unknown. level of MYTH >- Stuttering is primarily a disorder of people with FACT - Stuttering can affect individuals at any extremely high 1Qs. Children who stutter become stuttering intellectual ability. Some children who stutter continue stutter- ing as adults; most, however, stop stutteringbefore or during adults. adolescence with help from a speech-languagepathologist. Stuttering is primarily a childhood disorder, foundmuch more often in boys than in girls. unintelligi- MYTH > Disorders of phonology (or articulation) are never FACT - Disorders of phonology can make speech very serious and are always easy to correct. ble; it is sometimes very difficult to correct phonological or articulation problems, especially if the individual has cerebral palsy, mental retardation, or emotional orbehavioral disorders. MYTH >. A child with a cleft palate always has defective FACT - The child born with a cleft palate may or may not have a speech disorder, depending on the natureof the cleft, speech. the medical treatment given, and other factorssuch as psycho- logical characteristics and speech training. Communication disorders tend to occur more fre- MYTH - There is no relationship between intelligence and FACT quently among individuals of lower intellectual ability,although disorders of communication. these disorders may occur in individuals who areextremely intelligent. MYTH );.- There is not much overlap between language FACT Problems with verbal skillslistening, reading, writing, speakingore often a central featureof a learning disorders and learning disabilities. disability. The definitions of language disordersand several other disabilities are overlapping. 8t The ManualAlphabet A 0 82 Practice Learning Signs Learn and practice the signs andsentences on each page before proceeding to tiv next. Descriptions are suppliedat the bottom of each 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, Teachers and Caregivers o Early Childhood Autism: Changing Perspectives 84 NICHCY National 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: General Information About NEW PHONENUMBER: ) (202) 416-0300 (VOICE/TT) AUTISM (202) 416-0300(VOICE/ 4.. Definition -0. repetitive movements such as rocking and spinning, head banging and hand Autism is a developmental disorder which twisting; dsually becomes evident before the age of three insistence that the environment and years.It is a neurological or brain disorder in routine remk,"n unchanged; which behavior, communication, and social in- avoidance of eye contact; teractions are the primary disabilities. verbal and nonverbal communication skills are severely impaired; 4. Incidence 4. use of toys and objects is an u.nconven- tional manner, little imaginative play; The rate of incidence, or how often autism severe impairment of social interaction occurs in cHildren, ranges from five to fifteen development; and out of 10,000 births. The different estimates limited intellectual ability. are based on slightly different definitionsof autism. It should be noted that any one of these charac-..eristics may occur in children with other It is three times more common in boys than disabilities. In these cases the term "autistic- girls and is rarely found in more than one child like behavior is used. in a family. 4. Educational Implications 4. Autism can be caused by a number of fac- tors, but the cause in the vast majority is not Early diagnosis and educational evaluation known. It is known that autism is caused byof autism are very important, although help biological, not psychological, factors. given at any age can make a significant dif- ference. 4. Characteristics 4. Public Law 101-476, the Individuals with Some babies show signs of autism from Disabilities Education Act (IDEA), formerly infancy. They may not like to cuddle and maythe Education of the Handicapped Act, now show little interest in their families. includes autism as a separate disability cat- egory. Children with autismwill be eligible for Typical characteristics of autism are often special education and related services under described as: this new category. difficulty relating to people, objects and Until recently, children with autism have events; been eligible for special education andrelated 85 services u.nder the category of "other health Park, Clara, (1982) The Siege. Boston; Little impaired." The regulationif (CFR 300.5) to the Brown and Company. Education of the Handicapped Act state, "Other ealth impaired means (i) having an autistic Powers, Michael D. (Ed) (1989). Children with(. condition which is manifested by severe cotn- Autism, A Parent's Guide. Rockville, M1); tnu.nication and other developmental and Woodbine House. educational problems...".These regulations will be changed to reflect autism as a categoryWing, L., M.D., (1980). Autistic Children: A included under the IDEA. Guide for Parents and Professionals. Se- caucus, NJ: The Citadel Press. Emphasis in education needs to be on help- ,'ing the child tc learn ways to communicateand o.n structuringthe environment so that it is 4- Organizations <> consistent and predictable. Effectiveteaching includes attention to behavior plans, positive Autism Hotline 1 behavior management, and clear expectationsAutism Services Center and rule's. 101 Richmond Street Huntington, WV 25702 Many of these methods can be developedin (304) 523-8269 conjunction with parents and followedthrough at home. Continuity and consistencybetweenAutiam Society of America home and school environments can greatly aid 8601 Georgia Avenue in the security and progress of personswith Suite 503 autism. Silver Spring, MD 20910 (301) 565-0433 While autisir. is a lifetime condition, with special training, supervision, and support, Institute for Child Behavior Research many adults with autism canlive and work in 4182 Adams Avenue the community. San Diego, CA 92116 (618) 281-7165 -4> Resources + Autism Research International Newsletter Institute for Child Behavior Research 4182 Adams Avenue San Diego, CA 92116 This foletsteree wiee derdopedloterstase Reseertis Mee- Journal of Autism and Developmental dotes... Us.. wows' Coewerstiee Acreessent Disorders itlialWASSIPOS wide Coe Clek ef Special VoluessitotPro- grams. 'Tbseeoteadoeltbispoblicatiosdo am necesesrily Plenum Publishing Corporation vidisesteho sieweerpslidesehbelispertassestsadedestioo. eisesmowdosWeds souses, eseasserefal peedoxes ex 233 Spring Street ecipusiostiessboply esioreowsies tryibs tr.& deversioeco. New York, NY 10013 Th ..d-*M fa eiss peddledeSeafo unless otherwise iodieeted. Itosions sa. eacearsged es copysod shore it, bus pima. end% tho National Illteirglatti011C4 trtar far Chadrso asd/Teotte wide CNICIICY) . MATE 5'92 For more int, rmation contact NICHCY. BEST COPY AVAILABLE :Common Misconceptions About Autism Misconceptions Facts 1. Autism is an emotional disorder Autism occurs as a result of diverse organic etiologies ;' Autism and schizophrenia differ on . 2.It is difficult to distinguish between autism and childhood schizophrenia several important features, including age of onset, cognitive level, course, and family history 3. Aiitism occurs more commonly Autism appears to be evenly distributed among higher SES and educational across all SES and educational levels levels 4. Autism exists only in childhood Autism is a lifelong disorder' 5. With the proper treatment, most Characteristics and behaviors associated autistic children eventually "outgrow" with autism often improve as a result of autism intervention 6. Autistic children do not show social Autistic children can and do form social attachments, even to parents attachments, though their relationships typically lack a sense of reciprocity 7. Autistic children do not show Autistic children can and do show affectionate behavior affectionate behaviors such as hugging and kissing 8. Most autistic children have special Many autistic children have unevenly talents or abilities developed cognitive skills, but very few have savant capabilities 9. Most autistic children are not - 80% ofautistic children function mentally retarded intellectually within the range of mental retardation 10. Autistic children are more intelligent I.Q. scores are accurate, stable, and than scores from appropriate tests predictive when appropriate instruments indicate and assessment strategies are used W. Stone, Ph.D. 6194 SOL;16 c America, Inc. is the z:gency for autism? AUTISM: tolet ha imoitirs ncaI :-.apte:s.re;ociet..: r.,o.arcnr1;'1;a1;..:;nai cx:st .1a*.ionai and across education. agencyoffice the addressUnited dedicated More States. is: than to the 200The education _':.acple with autism. Its priorities nalhaa1[20'sg 7::115 '.1,"ooLlm,7- Lsni. S oc' ',venue4-y ef America Suite 650 Anatol la .1P S,02.2tS 1,1,122: 01 ..: AC. Tr.eliethnda, Nat;onal SocietyMaryland for Children2414-3015 r:7,74-P3.81and Fax: (301) 07-0869 rah Nat Ilso/,t ;n:1 th14 eiptha; rt;e:lorptfacal 021 rata: Lrt.ti ria.s bads eft wad iew 'C s;.ation and Referral Se!'vice at th,Vteam more? fazts hods c4 plums Su,ciety .:stsof America. and film Inc. lists, can a-dp.:ovide v,'" answer No cos na he! ,. Posath °ants .. Foilcwing are someaff:ce recominended alongw-nicn with ecomprehensive can be oblaihcd through rlistch":tooe haat *a ale t ! cit:r.:r appropriate references. ce paha( l...1., ,ca 4....6.1.1..... 2,.....$Q...... N .2-, .."9. .., 1..,,t,sm'rrim Society Acro,:ato. of America. 1979-1930, A Collection Comniled by [1 ...... ,....., ),tr; .1 Pi.,:ishers, Inc.. 1985 o! Cie to Purishment, Oonnellananc1LaVigna.AutistIc Syrdomes. Mary Coleman, C,Iadelet Press, 1972A '3,,,do tcr Parents and Pro- combinalosNM: pitons wiih and au..ism in varyn; may n;ites vissess th! atoe characteirlcs in various seivily. C'd ,'..:`; A New '1'..irrs, Teacher College Press, 1985 a in Autisr- EdItei by Powers, 1939 Publishinj corn piled by Ann Autism Society7910 of AmericaWoodmont Avenue Bethesda, Maryland 20814-3016 Suite 650 ..' .; `;., ?1,s.ies P,P.,urn 1 AU:Libc, Grandm, Arena Press, IL Series, Edited by Schopler Adults'Formerly With NSAC, Autism The Nat.onal Society for Childran and (301) 657-0881 Fax: (301) 657-0869 0 t.t ,t tit Taacomg, McGee, Menolascino.;,..01 Hobba, Thu ! new), p1 `2,-.,.:Ices Press, Inc ri,l/nr!: a tot.tv:)r,and its Imptical:ons funland, 1064 ;987 DikeCurnrnunicaNationalPr^nared of Scientific Instituteby and Of Health Neurological Reports and DisorderS and Stroi.e of Itle lriforinah.;11 in this leaflet IS lunen from Hoslon Little Drown &Clin.,!,.sher Co. 1902 and Christopher, ReprintedNMBethesda, Publication FebruaryMaryland No.83-1877 1933, 2W05 1907, 1990. 1931 Shod OurnIllon of Autism, adopted by the Professional I to ' PI..., the hoard ol Directors of the Autismte 8.4,7 1 -177 ANDPahltU HUMANS. DEPARTMENT Healih SERVICES Service OF HEALTH BEST COPY AVAILABLE psychological nment of a child have Educaljon.,,Highly stru-'.4r--1. skill-oriented il, has proven ; .; .e fiist 3 years of life. sa.vereiy incapacitating,iji:;a.:;hty lifelong that begins at birth or It occurs in beenHowBecause shown is it to diagnosed?there are no medical tests for autism autism. training,mustbernosLhelpful. develOped also taiioied be Social giventoas the much and i,to languageavoidingas possible, skillssecondary Thought should InciCe,ice:.:pprc,,,irat.;:y :s three 5 of times every greater 10,000 if births. a broader The r, would be both andpeople otncrs with with classical varying ofdegrees autism of is used. In the broader observationsat guide.timespresent, theFor the processolder of diagnosis the children, child's of elimination must behavior.whose be basedearly is Some-tne sym,. ononly helpfulinactivityhandicaps, for is familiesasuch problem. as withlossCounseling. membersof muscle Supportive tonewho whenhave counseling may be comm,n in males than females, and has been tc 1),:ha:ior. Autismthroughout is three timesthe world more in families of all and social backgrounds. interviewtomsdisorders?yearsIs have autism in theorder changed, parents ever to avoid associatedit about may misdiagnosis. bethe necessary child's with earlyother to ciansmembersautism,avoiding canservices unenlightenedjust usuallywho as haveavailable. it advise lifelong counselorsparents Care disabilities. must as to whobe counsel- Physi-taken erron- to is for other families with What are the syn-T43ms c autism? --clopment or lacK ot physical, social,tng ihyt:-.ms of speech, limited under- withAutismdisturbances,tion. other Perinataloccurs disorders either viralepilepsy, bywhichinfe itself :tions, or affect mentalor insome associationbrain retardation metabolic func- behavioreouslywhere believe causemetabolic autism. that abnormalities parentalMedication/Diet. attitudeS can be andInident- the types of autism tc.-.h, pain, balance, sm.ell,1.eas, taste, and use of,pont,..:::; words without r-,eaning to them. to sensations..Sight autisticmayHow result beha,,ior.severe in, or can exist autism in conjunction be? with causedbeneficial.ified,imbalances.or whosecontrolled by Examplesan autism excess Also, diet is and/orproperlyare ofaggravated uricthose medicat;on acid monitored whose in by the autism can blood,medica- be is nutritional ay- ho! is his bodyany one or a to7.,ponses peop:e,on back mayobjects panel)be learninaIn WithstantiallyUsually,milder approximately disabi;:ry forms,however, handicapped. autismsuch people 3% as of most childhoodthose with resemblesautism afflicted, aphasia. are severe sub- a someWhatlives.tion autistict" decreaseresearth individuals specificis being live symptomsmore done? can h,lp satisfactory ::1., . ,:;.5:r than 7:). tiost shoe/ wide Jf a;l those with autisi'n u on different2'3'.'3 tests betweenat 50 and autismtremendousandgressive cjurious,be may eery behavior. cause challengerepetitive,di' ficl;lt extremeThe behavior highlyto those forms unusual, may who of persistself- must and ag- to change, posinc TheresearchandinitiatedCommunicative National may a initiativesberesearch Institute contacted Disorders section in of diagnostic, andNeurologicaldirectly on Stroke autism ccncernino trea!ment,(NUNCDS) in and 1983, : ch,:dr with autism mathematics, or in autism..monage, treat, and teach individuals wifh proacheseducational, relevant habilitative, to autism. and evaluetive ap- , Hit ,for exar- i,evern I etan2ation working SincePeople certain with aatismsymptoms live may normal change life orspans. even NINCDS is Lonunuing to study the 14 aut!stic --.11isrs i,utitur? st:v:ral possible causes, treatm:.ntshoulddisappearWhat be areadjusted reevaluated over the time, mostto meet personsneieffective their iodically changing with treatments? and autism their Projectchildreneffortsarid the (a identified to 15-year outcomes). identify instudy predictive its CollaborativeThis Ongoingof 55,000 project signs studypregnancies ofcenters Perinatal autism. is necessary on to determine r:catiiiCal imbalance and ;111:1r 1-11:1 phenylketonuria, with others. exposure However,butVarious no single methods approprii. treatment of treatment is effective have in been all cases. tried programming, based on howneededinprevent aautism broad toor shedspectrumalleviateoccurs further and its of effects. lightscientificto identify on Basicthe disciplines challengesways research to is have also3 emerged as ( lho individual functioning level and need, is of ...... trn pm esented by Autism. 9 C . The h,..perative child, adolescent, am' 7,is,1/4:11LITIES a Re:Int:err, F.W. (1985). Phanriscoiogical adult: Attention deficit disorder treatment of attenti.m1 ticvdahl. T.E., Gross, M.,.es,t,uct et al. (1990). type (ADD, Cersbral RT. "rniB.i.m_alof c brain dysfunction." i.ihu.d onset New Englan.4 glucasc..mzaballina in adults ''',,,,xractivity"), irrt Chapter 22 : A., 1-' c ;,'r1, J L., Murrhy, D L., et al. (19'65).iiors. I. ClinicalTreatment efficacy. of hyperactive Archives of General Psychiatry, 42. children with Mark Reber Autism Upon completion of this chapter, the reader will: understandbe knowable to how define the to characteristics distinguish autism au.. al ailsn interventionfrom otherapproaches developmental to this disorder disabililies disorder be acquainted with the various brain-bascd developmental disability with multi- 'notpleLikemental causes. amental delay patterns inretardation,latRismAutism development, that diffas become from but apparentis a a mental retardationseries in that of its striking deviations from by 3 years of age. Autism involves characteristic feature is behaviornormal develop- (in par- disturbances ticular,in cognition,berg,(American the 1990). presence interpersonal Psychiaeric Deviant of obsessional,development Association, communication, social interactions, and in all of these areas is necessary1937; Cohen, forritualistic, a Donnellan, stereotyped, & Paul, and rigid diagnosis of1987;behaviors) Gill- outnumberinautism, 10,000 thus (Lotter, girls giving 4:1. 1966; riseThere Ritvo,to appearsits to be a Autism is a rare condition. Studies have classificationFreeman, as a pervasive Pingree, developmental et al., 1989), and genetic component,determined as a family its prevalence with onc to be about 4 boys with autism disorder. (Ritvo. Jorde,childA HISTORICALwith Mason-Brothers, autism has PERSPECTIVE about et al., a 9%1989). risk of having a second cd with autism describedDespite"autistic its inrarity, disturbances 1943. autism Dr. Leo has of Kanneraffectivebeen the published contact"focus of considerable(Kanner, research 1943, since p. 217). it wasthc He firstidentified description a of what hc their environment called first group of children who exhibited Mark Itekr, M.11 , iscf Medicine, Children's Seashore House, in Cfirical Assistint symptoms that isolated them from Pinfcsscr of Psychiatry at The Uni.crsity Philadelphia f Pcmsylvanii 407 TableAt 22.1.least 8 of the following Diagnostic criteria for autism from Group16 items 13, andsqould one be present. from Group C. (The The child should exhibit at examples ate ar- least two ; . dingo: ,:az or did not spcak at relate all.tliemsclves In 1.is a.k.a., in the the fundamental ordinary way dis- rangeditemswith from somore that Group severe those A, autism,firstone mentionedand theare later more examples likely to ale more likely to apply to apply to younger children or older children or children t1 al 1: am: t.:: t.otoi foam the -:en os as "an inability to not seek to be held, heginning of life" (p. ignored or shut out any social ape Ile observed that as children with less severe autism.) social interaction as Group A manifested by the following: d-ea :eatedatm' ;a-ate a.: o',;c, :<,r end ma reoa.. 7ed saolt a rataroessle, tapo;:':orting of a el:airthrew le minimal eyein theircontact. environment In that even a them into a rage. Among included parrot-hke addition, chil- minor Qualitative2.I. impairment in MarkedcomfortNo effort lack evenorof awarenessan whenabnormal ill, hurt,effort or tircd); to seek seeks comfortv.heneverof the at existence hurt) of others or comfort in a stereotypedtimes of dimress way (e. g . , docs not their feelings (e.g., says come for . :.ra- e:, some:ones uttered areak, :seal features of language long after they svere heard pronouns as heard (e.g., (delayed echo- using 3. "cheese,No domesticimitation cheese, oractivities, cheese" impaired mechanically imitates others' imitation (e.g., does not wave actions out of context) actively participate in bye-bye, '^es not copy simple games, mother's eit n f a...-c; imerpersonal Play la as repetitive and steteota it tendency to repeat ted that 'he parc:os:clatinash:ps, ofthese Lot speculated that pad, with little imaginative children tended to the disor- 4. 5. No Grosspreferssocialfriendships; playimpairment solitary or abnormal lacksplay in understanoling activities, involvesability other to make peer social play (e.g., does not of conventions of socia) friendships (e.g., no interestchildren in play only as interaction (e.g., rcads "mechanical aids") in making peer telephone :o' ,:ez aotitan. 1.ftKanner'a re 7tint1y, dcsenap'ion. "cold" 2.5:::). autism has ken a ;cooedand as "aloof a parents were biology. Con- Qualitativemanifested impaimsent by the following: in book to uninterested peer)) verbal and nonverbal Group II communication and in imaginative activity as n, s; c: , at: so-i; L.:stied the . es ea ar.er the sy '- eal (nig:not ts its the chid-l's own chlid's itability to relate,:opt ools si that constitute disturbanec, or a cer- the core features hile other re- 2.I. No stiffensMarkedlymode of when communication abnormal held, does not nonverbal communicatien look at the person cr (c.c., does notsmite anticipate whensocial making situations) a social approach, being held. ' ted 'Ma toe tango ane n. s thettart, e, liated program of Indiana ,TheUnivefsity A. _ _ 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'atthe IiiStittite for 'the:. ::-::::..'::Study, ofDVelopment41Disabilities. (ISDD)at Indiana Univeri.itSi, iilocirriin.gton'; -The ISDD.i s-ihe- University- Affiliated. , . t Prograth;of .,... \ . j. . '-. .! -.1 n d i .a r 1 a. , .... --4:?_--, , .. .r . - .. ,. "r -:-.--; .: JRCA is. one.. of. fdtir resource centers.supp Drteci.,1py, (the I.SDD. :7:T.- IRCA's. -' c6nter operationS -.., ." . s .- .s.are -:.designed 16. -complement "-tle - insti.tuté:s threecore 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.:,, , .., ...... ,.. of-, -15blic RelaliOns-,.,'-... _.':. .: -:.- -- . . 1,. 2 , .. :, . ... ( , " I . . . :285.3-East Tenth. Str&e,et: _:1310-ornington, Indlana;47408-2601 .1::' (842:) 855-6508' ' . -;(814 85-:9160 "7'1: .1. / - . ;, - . , . '."' , - - ,' -EfEST-COPY AVAILABLE 'I 00 - FACTS ABOUT AUTISM by Marci Wheeler Suzie Rimstidt Susan Gray Valerie De Palma Illustrated by Abram Boulding Indiana Resource Center for Autism Institute for the Study of Developmental Disabilities The University Affiliated Program of Indiana Indiana University Bloomington, Indiana 47408-2601 c. 1991 Autism is a diagnostic label for a lifelong developmental , WHAT IS AUTISM? disability caused by a brain dysfunction.* It cultures,occurs in and approximately educational 1backgrounds. in 1000 people of all races, * time.ItThe is accompanieddisorder shows by itself mental in infancyretardation or early about chNdhood. 80% of the , ' r77-- * DownIt can alsosyndrome, occur withFragile other X syndrome,conditions andsuch epilepsy. as deafness, SG. 1, .1--) els, and behavioral characteristics. AcrossPeople the with spectrum autism of vary those widely in abilities,About four intelligence out of five lev- people with autism are male. diagnosed with autism, the common components* are: abilities,Significant impairments in language and communication * SignificantA limited impairments number of activities in social and skills, interests. and There is no single known cause for autism. WHAT CAUSES AUTISM? Experts do not chemistryknow exactly of the what brain is different in an individual about the with structure, autism. autismResearch work is showing together that in an the unusual brain cells manner. of people with function, or Thecells chemicals may also which be too carryhigh or messages too low. between brain as. . People who. have autism may also havemental retardation, other disorders such Apparently,touch,processpeople. smell, incoming people and movement) sensory with autism information in the do samenot perceive way as other or (hearing, sight, Autism, however, is a separatebraincerebralgeneticseizures, disorder malformations. diseases, palsy, aside or from any other problems. * There is no definite medical test which can diagnose * Geneticautism.uting causefactors of are autism. considered to be one possible contrib- IntionsOtherand/or some duringcausal familiesassociated pregnancy,factors there problems being seems metabolic researched of to learning be a disorders, pattern include or language. viral infec-of' autismand birth NIcnIal ItelnrdalIon In rcople Aullsm complications. 11 0 .1. The diagnosis of autism is best made on HOWinformation IS com-AUTISM DIAGNOSED? team.pliedspeech/language byTeams various usually members pathologist, consist of ofan a interdisciplinary an0psychologist, a social worker. a teacher,assement Other a cts behavioraldoctor,professionalsA markedly or nurse information suchuneven may as be developmentala frnm importantphysical the family or additions occupational patternIt andis important school/program.to alerts the team.therapist,the that team t:le to team gather developmental and adultspretendandthe. problemspossibility art play, other inand of possiblethe autism.odd development use indicators. An of e)-early contactof historyAnothertoy play, in ofinteractions characteristic playlanguage with peers,delay with often seen in autism is abnormal reactionsseemay a mouthbecomeparticular to sensory or very smell Object. stimuli.upset items when Forin preference example,they hear topeople a particularlooking with at autismnoisethem or andSample has AutismDevelopmental Profile of a Person who is More Able yearsapparent and between into adulthood. ages 3-6, but continueIn most through individuals the scliool with autism these problems are most ability.overtion 70) problems But may they seem whichalso to have continuehave significant hyperactivity throughout socialIndividuals ortheir and a communica-lives. with autism who are more able (those with IQs 1 le.irning dis- Children with autismWHAT need to be CAN identified HELP early. A Families CHILD WITH AUTISM? imitateTeaching helps with them objects learn. and pictures,TheyMost and childrenprovidingalso learn with peersbest autism through to learn participation best through visualin real means. situa- gram.lyandfamily, in teachers ways The and emphasisthat can school the then child staff needscommunicate becomecan to understand,be veryon and helpingChildren frustrated. teach before morethe with child the effective-autism child, learn need an individualized learning pro- orawhentions, specific othef thesince interferingperson problem skills with taught such behaviors. autism asin anxiety,isolation tries Family to hyperactivity,use Somemay them and not children doctor inbe the remembered depression, canreal can benefitworld.. work from medication if it is giVen for wayscesthat includingtoit iscommunicate more reinforcement consistent and andon for arrangingpredictable. smallTheyChildren steps the need forward.environment with learning autism need soactivities chances which for successful incorporate experien- their theretogether is no to medicationassess the child'sthat cures need autism. for medication. However, understoodstrengthsingfunctional the typical and by and theinterests. developmental havechild awith clearThe alutism. learning purpose pattern.They activitiesthat need can planned eventually need integrationto be be with peers who are follow- I identifiable resour- WHATThe family CAN will HELPneed a comprehensive, THE PERSON WITH AUTISM? FAMILY OF A coordinated, and the lifetime of eachportces to atfamily. help home. families Too much Unfortunately,Professional there supports are presently may include, few but are obtain the needed information and sup- depends on the resourcefulness not limited to: of flexi',)le.autism. system Help andof family understanding supports ofthroughout extendedTheperson family with needs autism. information and knowledge theabout family.family members Respitecanprovided baby-sit in orby orouta trainedcan of the and home. knowledgeable person help implement a program to teach This help should be who and f;iends will be an important supportAn acceptir.: tos:bIln; and support educated groups community may be ashelpful to families. well as parent * the individual a specific skill or activity. Th e. family might need help in structuring daily aniself sleeping. care skills, They such might as need bathing, help dressing,in planning eating, living and and * CrisisotherBehavioral, intervention. therapies. speech, recreational, occupational, or Hcause it quickly becomesry apparenttechniquesTbe that family are traditional not often feels more successful if they canthrough successful community and family behavioral strategies for their child with autism successful with these children. outings. discipli- learn aca.sseiiir.:11:2y,facilities. .1c611cd the best Thisa in social aservices personprograin, worker might anat be a Familiescase manager may need a coordinator/ advocate to help in schools and otherthe agencycommunityadvocate where from the person another is service from a state them bwram, or a friend. - 1 %_'": -. 1 - ' / a AITFISM-Nils]: HAPPENSINOnce THE the diagnosis PUBLIC TO A of CHILDSCHOOLS?autism has WITH been made, autism binationdividual of student's programs strengths must be and made needs.Placement on the basis or assignment of to a specific program or com- the in- sh:luldpromote be listedindependent on the Individualizedfunctioning shouldFrom Education bethe considered child's Plan first(IEP). when years in school, long term planning toIEP goals. ormeetstypes parttime of the handicapping withstudent's supports needs, conditions, to programsagain depending mildClassA combinationor placement severe. on could of placements range from may regular be used education if full for students with other the student's tflis best contriHtem. tt: towards a successful experienceA k;1.:mledgeable in the school and sys- caring advocate for the student will willIndividual be required. Educational Plan. ForOften most the stUdents curriculum with will autism, be centered speech/ onlanguage functional therapy skills, , skillsasskills.community-basedpossible learn that Students willbyas andoing enable adult. can while programpractice theThese studentparticipating functionalsocial to learn to and live job, skillslanguage as social, competently may skills andbe part leisureas aswellof a in actual community A settings. A Vocational Rehabilitation Counselor must become in- %,.1u .- .t t yearsvolvedcontinue of in school. the their student's education educational until they planningSpecial are 21 yearseducation in the old. last districts four may elect to permit students to WHAT HAPPENS TO AN ADULT tit/Z(11. (P§A r::!"..y. ir WITH AUTISM? .1 ;- 4±':/:t autism. However, research indicatesChfldren that early with identification autism grow up to become adults with 1 andprepare productiveindividually and assist life. designed the person educational with autismAdults programs towith lead autism a meaningful will continue to learn. Their strengths, can help ie. 4 . 4 aprogrLit-ns,intc7t re.;trin.'d sts, andnumberav o: interventions. skills of:interests. may change However, with they schooling, will continuedeficits other to in communication and social skills and to exhibit / . ,..of.;:c1;z1ls working with the iirairgchild. ;:!isureSchooling for the sks adult :-'auld mast years thenbe mademust be yew bybegin the s, projctionsearly.family During with for input 1iving the from arrangements, job training, Adults with autism continue to have a restricted repertoire )N4. j- -;' ruJ tb'v-rds building;V:Iiits a foundation with autism for-; ormayall mmpart:nents aspects live at home,of the with with minimal roommates supports. inadult A few live corn- c apail =fits that are supervised, or alone in andsportsof recreational other events, community or interests. church, facilities and They to of useneed theirThey libraries, help Choice. continue to swimmingattend to benefitconcerts, pools, from individualized exercise ac- cinr.iele:.den'.1y. A very few marry and live with fz,ecentage, who dc not havew.ith mental support. retardation, spouses. ping,continuecantivities, share eating such theirwith out,as involvement othersswimming, and otherin the bowling,daily incommunity. the living community and activities, bikeThey riding, usuallythrough often that like shop- with they to ,)!.:1 (1: 'bility agencies.A hiEh percentage of people with autism a zmn from dai'y living skills and sheltered work to nt in suppot.ted work through develop- are receiving caregiversusefamily, public friends, for transportation; mobility and co-workers. in the community. someA fewdepend adults on with family autism or drive. Other adults can learn to Some adults work at WHATregular jobs JOBS in their CANcommunity, PEOPLE often WITH AUT:SM DO? certaininwith sheltered some supports support workshops. built from into job employment coaches orPeople andsupervisors. job with training. autism, Other regardless work of their functioning level, need * forTheylikes. tl=1 oftenneed to minimize aneed job whichthe decisionjob emphasizes tasks making. organized their andstrengths structured and steDs.organizeWritten orjot; pictured tasks and schedules split a large and job check into several lists simpler can help ming,clude libraryjanitorial/cleaning work, computer work, datakitchenSome entry, work examples computer such as of dishwash-program- jobs people with autism are doing in- action,necessarilyficeing andwork, andbasic newspaper repetitive. independence meal preparation, delivery, Skills arefor and assemblyessentialcommunication,People yard care. with andfor successautismpackaging, social need ininter- theof- jobs which are predictable but not workplace.social,runan understanding interference or sensory when supervisornature issues arise orwho at problems the canMost work help people of place. problem a communic- with solveautism tive, and will need pecific job training and 12 BEST COPY AVAILABLE The University of Minnesota's Institute for Disabilities Studies, directed by Travis Thompson, Ph.D., was established in 1987 to conduct basic and applied scientific research on preventing and intervening in developmental disabilities, and to design treatment and educational methods for people with disabilities. The Institute's research focuses on the prevention of disabilities arising from poverty; on behavioral and emotional problems associated with disabilities; and on disabilities that occur later in life. Because no single field of study can solve the complex problems of developmental disabilities, the Institute for Disabilities Studies is dedicated to interdisciplinary collaboration, making it a unique program within the University of Minnesota and across the country. ©1990 Institute 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 by The Minneapolis Foundation. The following contents do not necessarily represent the posit-ions and policies oi each organization mentioned in this brochure. 124 One in five people with mental retardation injures her or himself, causing pain and suffering to themselves, their families and others around them. This guide for parents, teac7 .ers and other caregivers of people who have developmental disabilities describes the more common types of self-injury and discusses methods foridentifying causes. Interventions are discussed and infoi mation isprovided concerning sources for further assistance. CHARACTERISTICS OF SELF-INJURY 1 What is self-injurious behavior and how common is it? Self-injurious behavior (SIB) is repe titive behavior that causes physical harm. Usually the behavior takes a verysimilar form every time it occurs -- for example, one child maybruise the side of her head by hitting herself with theknuckles of one hand. Another may repeatedly bite one place onhis right wrist. SIB is different from suicidal behaviorand suicidal gestures, and is seen almost exclusivelyin people with mental retardation and other developmental disabilities.In most instances, self-injury can be successfully treated,especially by intervening early in the developmentof the problem. While self-injury is rarely life-threatening,without treatment it can sometimes worsen to the point ofcausing permanent damage. A few people with severe self-injuryblind them- selves or suffer hearing loss, destroy partsof their bodies (e.g., portions of fingers or lips), produceconcussions, or cause repeated damagewhich leads to lingering infections. Do all children who bump their heads orhit themselves develop the problem of self-injury? No. About 17% of infants without adisability periodically hit their heads against their cribs oroccasionally hit their head or face with their hand when they are tired orfrustrated. Nearly all non-disabled infants stop hurtingthemselves by the time they are two years old. But as many as onein five children with mental retardation continuehurting them- selves periodically for months and years,sometimes severely. 126 My four year old son slaps his face repeatedly,but he doesn't leave any bruises, just reddened skin. Is thisa problem? Face slapping or any other behavior that is performedoften enough or intensely enough tocause reddening or breaking of the skin, bruises, bleeding,or other signs of tissue damage should be discussed with a professional experiencedwith self-injurious behavior in people with developmentaldis- abilities. Sources of help include special educationteachers, pediatricians, behavior analysts, social workers, childpsy- chiatrists and psychologists, and pediatric neurologists. Do children with some particular disabilities havemore prob- lems with self-injury than children with other disabilities? Children with several uncommon disabling conditions,such as Autism, Cornelia de Lange syndrome, Fragile Xsyn- drome, Lesch-Nyhan syndrome, and Rett syndrome have problems with self-injury more often than childrenwith other developmental disabilities. However, sinceas many as 20% of children with disabilities display self-injuryat some time in their lives, the problem extends well beyond these rarer disabilities. People wishing further information about specific disabilities often associated with self-injuryshould contact the resources listed at the end of this brochure. CAUSES OF SELF-INJURY What is known about thecauses of the problem? Thirty years ago, some writers speculated that children who hurt themselves were born thesame as other children but that their self-injury resulted from a coldor detached style of mothering. There is no evidence to support this theory. Today, most experts realizethat self-injury usually has more than one cause. There mayoften be an underlying biological tendency for a child to selfinjure. How often, underwhat circumstances and howintensely the child self-injuresoften depends on learning experiences,which can cause the self- injury to decrease or sometimes growmuch worse. self-injurious behavior? . Can medical problems cause Several medical conditions canlead to self-injury. Children with ear infections, forexample, may try to reducetheir dis- comfort by hitting or slappingat their ears. Similarly,they may repeatedlyscratch at an area of itchingskin, and con- tinue to scratch whenthe skin begins to heal.Once the earache or skin irritationclears up, the self-injuryusually stops. If the self-injurycontinues after the medicalproblem is over, another causefor the behavior should beconsidered. Can dietary factors such as sugar,artificial coloring, or other food additives causeself-injury? There is little carefullydone research on the effectsof diet or food ingredients on self-injury, or onmegavitamin therapy as a treatmentfor self-injury The studies onfood and hyper- activity (extreme restlessnessand overactivity) inchildren show no consistent effectof diet on behavior.For most children, activity level does not appearto be changed by the items in a normal diet, but asmall number of children maybe affected by diet. I often see my childhurting himself when heis angry. For example, he bumps hishead when it is time to put onhis shoes. Why does he dothis? Children sometimes learn toavoid or delay doing thingstha t they don't i ke byhurting themselves. Perhapsthe youngster finds it difficult to put onhis shoes, or does not enjoythe activity that will follow oncehe is dressed. Maybehe just nrrqen; tocontinue with whatever he isdoina. Because it is 1 26 difficult for adults to continue to request something from a child who is engaged in self-injury, some children learn to control what happens in their lives by hurting themselves. Self-injury is especially likely to be learned if the child cannot speak and has no other effective way to communicate. My child speaks only a few words. Is it possible that she is trying to tell us something by hurting herself? Self-injury can be an effective method for getting attention from adults, because the parent's natural response is to im- mediately go to the child to see what is wrong and to try to stop the self-injury. Sometimes it is necessary for adults to physically prevent the child from injuring him or herself. Children who have difficulty communicating can learn that attention can be gotten at any time by hurting themselves. Beyond simply gaining attention, children can also learn to hurt themselves to obtain other things they need or want. These may include preferred foods, favored activities, or being left alone. Self-injury is disturbing and even alarming to adults, and they will do whatever they can to stop it. Adults often offer various things to the child until s/he stops self-injuring. Unfortunately, the child may self-injure for a different reason the next time, and the process of adult guessing will be repeated again and again, unless a more satisfactory form of communication is developed. Even though our child communicates very well, he threatens to scratch his face or hurts himself in other ways when he wants something he shouldn't have. Since he tells us exactly what he wants, communication can't be the reason for his self-injury. Self-injury can still be a powerful and quick way for a child to get what he wants, at least part of the time. Seeing children deliberately hurt themselves is extremely upsetting for par- ents and others.It is very difficult not to give in at least occasionally, and provide what the child wants to stop the self-injury. Although it is not intended, this rewards the child's self-injury and can cause the self-injury to continue. 'f", So far, none of this seems to fit my child. She has Down syndrome, and had aComplete medical evaluation showing no medical problems that could account for her self-injury. It doesn't seem to be an attempt to communicate or to get attention. In fact, she likes to be alone. She rocks for long periods of time. When she rocks, she bumps against the wall and has caused a bruised spot that seems never to heal. Some children perform a repetitive movement that results in skin, muscle, or even bone damage because it is repeated over and over again.The stimulation produced by the repeated movement may be pleasant to her, much as rocking is enjoyed by a baby. The injury is a by-product of the way the movement is performed (in this case, by constantly bumping against the wall). Similar problems are seen in children who have impaired vision. A child with a visual handicap might learn to press a finger into the eye because of the flashes of light this mechanical stimulation produces through the optic nerve. Obviously, this can cause physical damage to the eye. I can see that repeating the same movement can cause injury as an accidental by-product of the movement. However, when my son bangs his head, it seems that his only purpose is to damage himself. A different kind of self-stimulation can result from self- injury:Sufficient pain causes the release of "endogenous opioids," which are natural chemicals in our bodies that protect us from feeling intense pain. Endogenous opioids can also produce feelings of euphoria, such as the so-called "runner's high" that some people experience when running marathons. Some people may self-injure in order to be stimulated by these pleasant effects of endogenous opioids. Research on endogenous opioids as a cause of self-injurious behavior is just beginning, and may lead to new treatments for some self-injury. TREATMENTS FOR SELF-1NJURY With so many different causes, how is self-injurytreated? The first step is to try to discover the causes of the child'sself- injurious behavior. It is important to identify anymedical problems that might be responsible. This requires athorough examina tion by a physician familiar with children withmental retardation. Other 6auses for self-injury can be identifiedby examining the circumstances in which the childself-injures. When the behavior occurs primarily in adult companybut rarely when the child is alone, it is often directed atgetting attention or other things that the child needs or wants.Self- injury that occurs when the child is asked to dosomething or during activities the child dislikes may be attempts toavoid unpleasant activities. The child who is just as likely toself- injure when alone as when he or she is withadults may be showing behavior that is a form of self-stimulation.Each of these causes suggests a different avenue of treatment to a professional experienced in treating self-injury. Once causes are identified, what treatments areavailable? A range of treatments are available,including providing more rewarding activities atwhich the youngster can easily succeed, providing communication training,decreasing the demands made on a child, and drug treatment. Apositive environment with appropriate training, social,recreational, and other experiences must provide thefoundation for any treatment for. self-injury. Thatenvironment must provide activities with the correct amount of challenge:Tasks should be easy enough for the child to besuccessful. Assessing the environment of a self-injurious child, and selectionand use of effective treatments, usually requirethe assistance of a developmental disabilities professional.Treatments should be matched to the cause identified. Forexample, children who learn to hurt lhemsdves to gain attention frori parents, teachers or other people caring fcthem can usually be 131 taught to seek that attention in healthier ways, making it unnecessary for them to hurtthemselves. Teaching children to develop other communication methods, or to useother constructive ways of gaining adult attention is often enough to reduce self-injury. In other circumstances,self-injury is thought to be caused mainly by a biological condition, such as a brain chemical imbalance.In such instances, it may be necessary to treat theunderlying problems with a drug intended to correct the imbalance. My child takes medication for self-injury. She still hurtsher- self, but not as often. Medications are currently one of the most common forms of treatment for self-injury. The medicationsusually tried for -self-injury are called neuroleptics, which are the same types of drugs used for treating some major mental illnesses. These and other drugs can be helpful for certain conditions, how- ever they are rarely usedalone except when the person clearly has mental illness as well as mental retardation. A disadvantage of some drug treatments is that they can have both immediate and long-term unwanted side effects, some of which can be very serious. Treatment with medication always 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 usuallysufficient to reduce or eliminate self-injuriousbehavior, and parents are urged not to usespanking, slapping, or scolding to control self-injury. Punishment procedures bythemselves are not an appropriate treatment.However, as one part of a carefully designed overall treatment program inclosely supervised clinical settings, various response suppression procedures have been reported to be effective under some circumstances. Such procedures are controversial. Parents wishing further information on this topic areencouraged to contact the following resources: 1 az 7 1) The position statement onthe use of aversive and deprivation procedures ofthe Association for Retarded Citizens Minnesota (ARC MN).This statement is available by calling ARC MN at(800) 582-5256 or (612) 827-5641, or from the Institute forDisabilities Studies, (612) 627-4537. Addresses for bothorganizations are listed amongthe resources at theend of this brochure. 2) The 1939 NationalInstitutes of Health Consensus Development ConferenceStatement, Treatment of Destructive Behaviors in Persons withDevelopmental Disabilities.Single copies can be obtained fromthe Director of Communications, Office of Medical Applicationsof Research, Na tional Insti tutes of Health, Building 1,Room 260, Bethesda, MD20892. When my child is busy,there seems to be less self-injury. Whether at home or at school,keeping a child occupied with enjoyable activities at whichthey can easily succeed, and providing frequent adultattention will often reduceself- injury. The key to reducingself-injury by providing these activities is to pro.note thechild's active responding and learning of new skills. It appearsthat it is most helpful to have the child participatein doing things, rather thandoing 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 Bruce L. Bakke, Ph.D.Support was provided by The Minneapolis Foundation. This material provides an introduction to the problem of self-injuriousbehavior in people with developmental d isabilities. Further information can be obtained by contacting the Institute or the people and organizations listed below: Institute for Disabilities Studies Technical Assistance Program University of Minnesota 2221 Uni ersity Avenue Southeast, Suite 145 Minneapolis, MN 55414 (612) 627-4537, or FAX (612) 627-4522 Association for Retarded Citizeng Minnesota (ARC MN) 3225 Lyndale Avenue South Minneapolis, MN 55408 (612) 827-5641, or toll free (800) 582-5256 Nonaversive Behavior Management Information Sr Referral Service National Research (g.t Training Center on Communi ty- Referenced, Nonaversive Behavior Management for Students with Severe Disabilities San Francisco State University San Francisco, CA 94132 Toll-free (800) 451-0608 (9 AM to 4 PM Pacific Time) Michael F. Cataldo, Ph.D. Director of Psychology The Kennedy Institute The Johns Hopkins University 707 North Broadway Baltimore, MD 21205 (301) 550-9455 9 134 please contact: For information onaspecific syndrome, with Autism(TSAC) Twin CitiesSociety forChildren & Adults 253 East FourthStreet St. Paul, MN55101 (612) 228-9074 Cornelia de LangeSyndrome Foundation 60 Dyer Avenue Collensville, CT06022 (203) 693-0159, ortoll free (800)223-8355 Lesch-NyhanSyndrome William L. Nyhan,M.D., Ph.D. Professor ofPediatrics School of Medicine University ofCalifornia San Diego San Diego, CA92093-0609 (619) 534-4150 National FragileX Foundation 1441 YorkStreet, Suite 215 Denver, CO 80206 (303) 333-6155, ortoll free (800)688-8765 International RettSyndrome Association 8511 Rose MarieDrive Fort Washington,MD 20744 (301) 248-7031 Tourette SyndromeAssociation 42 - 40 BellBoulevard Bayside, NY 11361, (718) 224-2999, ortoll free (800)237-0717 disabilities andcaregiving: For generalinformation about PACER Center 4826 ChicagoAvenue South Minneapolis, MN55417-1055 (612) 827-2966, orFAX (612) 827-3065 DOD i 35 Early Childhood Autism: Changing Perspectives Sam B. Morgan Department of Psychology Memphis State University Memphis, Tennessee This article reviews current concepts and research findings concerning early childhood autism with an emphasis on recent changes in perspectives on the disorder. Autism is viewed as a pervasive developmental disorder with cognitive impairment as a central feature. The evolution of the current definition of autism is traced with reference to research findings that prompted revisions of the original definition. Evidence is summarized that demonstrates long-term cognitive dysfunction 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 adulthood is reviewed, along with variables in early life that are predictive of later function- ing. The past two decades have seen a new perspective ly displaced by the concept of autism as a develop- on autism emerge. The once prevailing view of autism mental disorder in which cognitive dysfunction plays as a psychogenic emotional disorder has been gadual- a central role. This shift in perspectiveculminated in the 1979 title change of the Journal of Autism and Childhood Schizophrenia to the Journal of Autism and Developmental Disorders (Schopler, Rutter, Chess, 1979) and the recent classification of autism This article is based on a presentation made by the author as a pervasive developmental disorder by theDiag- at the St. Joseph Hospital Fourth Annual Conference on Childrrn and Youth, November, 1984, Memphis, Ten- nostic and Statistical Manual of Mental Disorders: nt...ce. Reprint requests should be addressed to: DSM-III (American Psychiatric .Association, 1980). This developmental perspective has evolved out of Sam 13. Morgan, Ph.D. (a) Department of Psychology cumulative research findings which show that: Memphis State University aUtism is consistently associated with organic more Memphis, TN 38152 than psychosocial variables (DeMyer, Hingtgen, BEST COPY AVAIIABLE 136 1979) and (b) autistic children have "good cognitivepotentialities." Jackson, 1981; Piggot, 1979; Rutter, Another change relates to the assumption thatautis- cognitive impairment representsthe primary and handicap in autism (De- tic children are neurologicallyintact. Recent defini- mcist enduring psychological tions of autism, such as thoseoffered byDSM-III Mye- t al., 1981; Morgan,1984;Rutter,1983). major shifts in think- (American Psychiatric Association,1980)and the article fccuses on some National Association of AutisticChildren (Ritvo & ing auout autism that haveoccurred in recent years. have not only theoretical Freeman, 1977), do not include normalintelligence These revisions in thinking and absence of neuropathology ascriteria. Autism is implications, but also relevance forthose practitioners at all levels of intelligence prc-,iding service to autisticchildren and adults. The now assumed to occur of autism, the nature with or without demonstrableorganic pathology. changes center on the definition the most widely used of the basic impairment,and the relative contribution In DSM-III,.which provides psychosotial factors to the de- set of diagnostic criteriafor autism, the disorder is of biological versus developmental disorder. Such velogment of the disorder.These changes also ad- listed as a pervasive educational, and vocational disorders, which in the pasthad been called child- dres6 issues of treatment, by marked distor- neetiS, aswell as long-termprognosis. hood.psychoses, are characterized tions in the timing, rate, and sequenceof many psy- criteria for autism by Changes in Definition chological functions. The six DSM-IIIare: The official history of autismbegan in .1938 when Child Psychiatry Clinic at Leo Kanner, Director of the (a)onset before 30 months of age Johns Hopkins, ..saw a5-year-old boy from 'a small 1943, 1973).The boy Mississippi town (Kanner, responsiveness to other demonstrated a novel cluster ofbehavioral symptoms (b) pervasive lack of that Kanner had never seenbefore nor read about in people (autism) the literature.Although Kanner appreciatedthe uniqueness of*the syndromepresented by this young- (c) gross deficits inlanguage development ster, he could not haveforeseen at that time the vast have on the behavioral impact that this disorder would peculiar speech sciences and the long-standingcontroversy that would (d) if speech is present, su rid it. By 1943, Kannerhad seen 10 more chil- patterns . dre,, who presented thisstrange set of symptoms. That year, he published his nowclassic article that (e) bizarre responses tovarious aspects of first described these childrenand proposed thattheir environment (e.g., resistance tochange, symptoms represented a rarebehavior disorder (Kan- peculiar interest in orattachments to ner, 1943).The next year, he coined theterm early inanimate objects) 1944). infantile-autismfor the syndrome (Kanner, Kanner(1943, 1949)outlined five major symptoms ( f ) absence of delusions,hallucinations, loosening as composingthe syndrome. First and foremost was incoherence as in the inability of thesechildren to relate normally to of associations, and people and situations fromthe start of life. Through- schizophrenia out infancy andchildhood, they maintainedwhat (pp. 89-90) ,Kanner called "autisticaloneness," forming no ap- parent attachments topeople and seeming tolive in their own world, as if others didnot exist. The second Cognitive Impairmentin Autism feature was the children'sobsessive need to maintain sameness in theenvironment. The thirdcharacteristic of of The exclusion byDSM-IIIof any,.stipulation was their failure to uselanguage for the purpose is based on longitudinal their fascination with normal cognitive functioning cormswnication. The fourth was studies showing that mostautistic persons reveal objects, and their abiFity tohandle them with 'dex- impairment that persists good "cognitive potenti- substantial cognitive terity. The fifth was their throughout their lives. Thereis no longer anydoubt alities," as inferred from theirattractive appearances and mental retardation and the extraordinary that, in most cases, autism the and serious facial expressions, coexist (Schopler &Mesibov. 1983). Although skills demonstrated in certainisolated areas. intelligence varies widelyin au- to which autism has level of functional nespi t e the intensive scrutiny tistic children, the vastmajority function withinthe subjected over the years,Kanner's orisinal be- Rutter, 1976; DeMyer et.al., in fairly intact form. retarded range ( Bartak & ha. ioral syndrome has sur..ived 1974). About 60e;.. ofautistic children haveIQs be- The recent revisions indefinition relate more to his between 50 and 70; andonly the behavior low 50; 20r; have IQs inferences about the disorder than to 20':; have IQs of 70 orhigher (Ritvo & Freeman, per se. One revi:iion concernsKanner's inference that BEST COPY AVAIIABLE 131 AUTISM: CHANGING PERSPECTIVES 1977). Further, the intellectual level remains stable of poor outcome; conversely, an IQ above 60or throughout the lives of most autistic individuals (Rut- greatly inCreases the chances of educationalprogre ter, Greenfekl, & Lockyer, 1967). and social adjustment. It is often stated that the. mental retardation in The isolated abilities shown by autistic childrc autism is spurious, because thIQs obtained on often mislead us to overestimate their cognitivep autistic children are not representative of their "true" tential and underestimate their cognitive impairrner. intelligence. The autistic child who obtained a low These so-called "splinter skills" prompted Kanner IQ or is "untestable" is often viewed as inaccessible, his early writing to attribute "good cognitive pote: inattentive, and resistant to testing. No consistent tialities" to these children. These abilities, which di evidence exists to support the argument that the ferentiate the autistic child from the child who generally low intellectual scores are more a function simply retarded, include motor and spatial skit of negativism than cognitive impairment. Further, a rote memory, and hyperlexia (Cobrinik, 1974; D thimber of studies have demonstrated that the "un- Myer et al., 1981; Rimland, 1964; Whitehouse & Ha .testability" reflects low ability more than refusal to ris, 1984). For many years, the assumption prevaile participate (Alpern, 1967; Alpern & Kimberlin, 1979; that these scattered skills gave glimpses of the child Hingtgen & Churchill, 1969, 1971). These studies re- "true" intelligence, which was masked by withdraw veal that valid measures of "untestable" autistic and negativism.. This led to the further assumptic children can usually be obtained if the .tests are not that the child's normal intelligence would emerge fu: dependett on language and are commensurate with blown with removal of the emotional barriers. the child's developmental level. The research already noted fails to support the Also reflective of a hasic cognitive impairment is assumptions of good cognitive potential in most aut.: the language retardation found in the preponderance tic children. Even though autistic behaviors may d of autistic persons. A growing body of evidence points minish somewhat as the child grows older, the inferrc to language deficiency as a central feature of the potentialities are seldom realized. The isolated ski: disorder. At least 28% of those diagnosed autistic rarely merge into any adaptive intelligence that e: are mute (Lotter, 1967). Those who do develop ables the child to understand and cope flexibly wi speech show a wide range of individual differences in the world. Most autistic individuals, then, rnainta ability to communicate, with most demonstrating lifelong cognitive impairment. he specific defe . substantial retardation in language development (Bar- underlying this impairment remains the subject tak, Rutter, & Cox, 1975; Lord & Baker, 1977). The speculation, but intensive scientific effort,inti language defects usually appear at a very early age; form of theory development and research, continu in fact, speech delay represents the most frequent in an attempt to better understand what the defe early complaint by parents of autistic children (Ornitz is and how it is caused (Morgan, 1984, in pres & Ritvo,1976).. The early deficits tend to persist; Rutter, 1983). autistic children, regardless of age, generally perform well below expectations for age. The typical 6-year- Autism as a Biogenic Disorder old autistic child, for example, functions at or below the 3-year-old level on most language tests. More- The psychogenic theory of autismthat is,tl over, these language scores are usually well below hypothesis indicting psychosocial variables as p: developmental ages estimated from nonverbal per- mary causes of autismappears to besuffering formance tests (DeMyer, 1976; Lord & Baker, 1977). slow and painful death.However, just when ti The cognitive variables of language and IQ assume theory seems to be laboring for its last breath, sorn even greater importance in light of the finding that one attempts to resusitate it. No less a behavior they represent the most potent predictors of the scientist than the Nobel laureate Niko Tinbergen autistic child's eventual adjustment. Onset of mean- recently emerged as -an advocate of psychogen ingful speech before age 5 or 6 appears to be crucial theory (Tinbergen & Tinbergen, 1983). Surprisingl to later adjustment (Kanner, 1971; Kanner, Rodri- though, he presents highly speculative, anecdotal: quez, & Ashenden, 1972; Lotter, 1978; Rutter, Green- based arguments reminiscent of those proposed 11 feld, & Lockyer, 1967). The child who develops func- Bettelheim (1967) almost 20 years ago in his boc tional speech by this age at least stands a chance to The Empty Fortress (which Kanner [1969] referre attain marginal or good adjustment, whereas the to as the "empty book"). mute child has virtually no chance at all. The mea- The primary reason for the demise of psychogen sured intelligence of the young autistic child also theories of auti ;m can be simply stated: There serv, ; as a strong predictor of later adaptation. The little, if any, evidence to support such theories.I highcr the IQ, the closer the child will approach view of the evidence (or lack thereof), one wonde. normal adapt tion. Two independent studies (De- how the theories have survived as long as they hav Myer et al., 1973; Rutter & Lockyer, 1967) demon- Although no clear and consistent cause of autis, strated that an IQ below 40 is invariably predictive has been determined, the inescapable inference to I 136 drawn from numerous studies is that the disorder is tal syphilis, and Fragile-X Syndrome (Brown et al, more clearly related to biogenic than psychogenic 1982; Darby, 1976; Piggott, 1979; Rutter, 1979). Re- factors. Within the scope of this articlenne cannot cent studies (e.g., Jones & Prior, 1985) reportmore begin to review the research that bears on this issue; signs of neurological dysfunction in autistic children sue review would fill several volumes. Neverthe- than were noted earlier. These dysfunctions often less,,urnmary of some of the major lines of evidence emerge more clearly as the children grow older, even will be presented. in those children who originally showed no such prob- First is the question of whether parents of autistic lems (Rutter, 1970; Wing, 1976). For example, the children show special psyehological characteristics number of autistic children with abnormal EEGs is that may be pathogenic for a ntism. Kanner (1943, significantly higher than once suspected, and about 1949) and other writers (e.g., Eisenberg, 1957) argued one fourth or more exhibit convulsive disorders by that these parents are indeed a very special group in the time they become adolescents-and adults (Rutter, intelligence and personality. The classic "parent-of- 1970). an-dutistic-child" that emerged from the literature The most plausible conclusion that we can draw was;a higialy intelligent, aloof, cold superachiever of from the available evidence is that autism is the be- high socioeconomic status. More recent, better con- havioral end-product of an underlying organic defect trolled research casts doubt on this stereotype and (or combination of defects) that may arise in dif- suggests that it was based on biased samples. In a ferent ways through a variety of possible causal comprehensive study, Schopler, Andrews, and Strupp agents. The underlying defect or damage not only (1979) found no significant class differences ,in fam- affects cognitive functioning but also emotional and ilies of 522 autistic children evaluated at the Uni- affective perception and responsiveness (Rutter, 1983; versity of North Carolina at Chapel Hill. In a review Morgan, 1981, in press). By accepting the conclusion of research on family factors in autism, McAdoo and that the autistic child has an organic disorder, we do DeMyer (1977) concluded that parents of autistic not deny that the disorder can be aggravated or im- children, in comparison to parents of children with proved to some extent by social and psychological other behavior disorders or handicaps, generally ex- influences. We are only rejecting the idea that the hibit no deviant personality traits such as obsessive- disorder is caused by such influences. ness, coldness, or social anxiety, and no particular defic;fs in acceptance, nurturance, warmth, feeding, Intervention and Treatment and ieral stimulation of their infants. A recent, well- __aclucted study by Koegel, Schriebman, O'Neill, Despite claims made by more ardent advocates of and Burke (1983) further supported this conclusion certain treatments, there is no cure for autism. Some by demonstrating that families of autistic children do interventions, however, appear to help more than not differ from "normal" families in terms of parental others. The most effective treatment programs are NIMPI profile, marital happiness, family interactions, those that are started early and pervade the child's and parental stress. In view of the absence of research total life. Such progTams require early diagnosis of findings to support the psychogenic position, the autism, early counserig of parents, strong parental burden of proof still rests squarely on the shoulders involvement in the child's treatment, and well-struc- of the psychogenic diehards. tured, individualized special education. For teaching While there exists little evidence to support psycho- the young autistic child speech, social, and self-help social causation of autism, we can point to clear and skills, application of behavior modification principles consistent findings that bolster the biogenic position. has been effective and appears to enhance adaptive Because autism appears to emerge during early in- functioning (Lovaas, Koegel, Simmons, & Long, 1973; fancy, it is reasonable to suspect a genetic component. Schriebman, Charlop, & Britten, 1983). Autistic chil- Indeed, twin studies have demonstrated a substan- dren who respond best to behavioral treatment pro- tial genetic predisposition toward autism (Folstein & grams generally have parents who ate willing to Rutter, 1977; Spence, 1976). Identical twins show a assume the role of primary therapists. Such treat- much higher concordance rate for autism than do ment is much more effective when initiated early, fraternal twins. We cannot conclude, however, that and when the parents are committed to placing de- the primary cause of autis:n resides in a single gene mands on the child and carefully managing behavioral (as in phenylketonuria) or chromosome (as in Dovrns contingencies. Syndrome), but rather that genetic factors appear to Along with early intervention and parental involve- oredispose some children toward developing the dis- ment, special education has been shown to play an ordr essential role in helping the autistic child to adapt 0 research has demonstrated that autism can tti the world (Rutter 8.: Bartak, 1973). Many corn- arise from a number of diverse neuropathological con- ! ,unities now have special education programs de- litions, which include phenyiketonuria, congenital signed to meet the needs of children with autism and i.uhella, tuberous sclerosis, lead intoxication, congeni- related disorders. Such programs focus on the de- BEST COPYAVAILABLE 133 ALfISM: L!-LANGLCG PERSPE(..;TINES velopment cf speech and cognitive skills, as well as initially view special diets and vitamin therapiesas social and adaptive skills. Special eclucation efforts panaceas, but later are disappointed with overall ,re most productive when integrated within broad results. -rimu ni ty-based treatment programs. The TEACCH Traditional psychoanalytic and "play therapy"ap- l'reatment and Education of Autistic and related proaches have failed in the treatment of autism (Rut- Communications handicapped CHildren) programs in ter & Bartak, 1973; Schriebman, Charlop, & Britten, North Carolina represent a community approach that 1983). Aside from being time-consuming and often provides comprehensive educational and treatment expensive, such approaches show no correlation with services to autistic individuals and their parents later outcome. (Reichler & Schopler, 1976). Unfortunately, most communities fall short of offering sufficient services of this kind. Long-Term Adjustment of Autistic Individuals -An important, but often overlooked, aspect of in- tervaltion concerns the impact of the autistic child on The question that eventually enters the minds of parents and family members. For many years, the most persons interested in autistic children is: What focus was on the influence of the family, particularly happens to them when they grow up? The only basis the parents, in the development of autism. With re- for answers to this question is the available informa- search now pointing overwhelmingly to organic causa- tion we have on autistic individuals who have already tion, attention has gradually shifted to the special reached adolescence and adulthood. From such data, problems thet an autistic individual creates within we have determined those variables that are asso- the family system. The National Society for Autistic ciated with long-term improvement and adjustment. Children and affiliated local chapters has-e served The conclusions that we draw from such data, how- for some time as a source of support and information ever, must be tentative and subject to revision; many for parents and family. Professionals are now recog- of the individuals studied, especially those who are nizing the special needs of the family, and are direct- now adults, did not have the benefit of intensive early ing more effect toward research on family issues and treatment or special education programs now avail- development of appropriate services. In fact, a recent able to autistic children in many communities. The Effects of Autism on the Family (Schopler The current outlook for autistic children as adults NIesibov, 1984), deals exclusively with this topic. is generally poor. In a recent review of 'all follow-up Another recent development in intervention has studies on autistic children, Lotter (1978) reported centered on the special needs of the autistic individual that only 5-17% eventually achieved "good outcomes" who has entered adolescence and adulthood (Schopler as adolescents or adults; that is, their social life was & Mesibov, 1983). Of special concern is vocational near normal, and school or work performance was training and placement as well as provision of ade- satisfactory. On the other hand, 61-74% had "very quate adult residences, such as community group. poor outcomes" and were incapable of leading inde-7 homes, as alternatives to institutional placement. pendent lives. Since most evidence points to physical causation in As noted previously, two of the strongest predic- autism, there have been increased attempts to find tors of positive outcome are early communicative an effective biochemical treatment. Although a num- speech and relatively hi-gh measured intelligence ber of drugs have been tried, none have been success- (Kanner, Rodriquez, & Ashenden, 1972; Lotter, 1978) . ful in eliminating the basic symptoms of autism. Other factors related to later adjustment include Some have been useful (e.g., Haldol, Flenfluramine) neurological factors, severity of early symptoms, play in partially controlling associated problems, such as behavior, early intervention, parental commitment hyperactivity, attention problems, sterotypic behavior, to treatment, and special education. Seizures and and sleep disturbances (August, Raz, & Baird, 1985; other clear signs of neurological dy-sfunction or dam- Campbell, Geller, & Cohen, 1977; Campbell, 1978). age are correlated with severity of retardation and Rather than serving as a primary treatment, such long-term impairment (Lotter, 1978). The severity drugs are generally used as adjuncts to behavioral of early symptoms.also relates to later adjustment; and educaticnal interventions. the more pronounced the autistic syndrome, the A controversial form of biochemical treatment that poorer the response to treatment and educational has received a great deal of publicity is so-called programs (DeMyer et al., 1973). The young autistic megavitamin therapy. Although improvement in be- child's play behavior also gives clues about prognosis; vior of some autistic children has been reported if the child plays appropriately with toys before age ill high doses of single or multiple vitamins, the 5, this is a positive sign (Brown, 1960). Further, if results are inconclusive, and additional studies are the parents are willing to commit themselves to a needed to establish the effectiveness of such treat- systematic behavioral program for the child at an ment (Rimland, Callaway, & Dreyfus, 1978). Because early age, then chances of later adaptation are in- of sometimes misleading publicity, parents tend to creased (Lovaas et al., 1973; Schriebman & Koegel, 140 BEST COPY AVAILABLE SAM B. MORGAN well-structured spe- in children.Journal of Autism and Childhood Schizo- 1975). Finally, participation in a phrenia, 6, 339-352. cial education program wherethe child teceives in- DeMyer, M. K. (1976).Motor, perceptual-motor, and dividual attention improvesthe long-term outlook intellectual disabilities of autistic children.In L. Wing (R. & Bartak, 1973). (Ed.), Early childhood autism to2nd ed.), (pp. 169-193). London:Pergarnon Press. t should notview these factors as final answers DeMyer, M. K., Barton, S., Alpern, G. D.,Kimberlin. D., to the questions oflong-term prognosis in autistic Allen, J., Yang, E., & Steele, R.(1974). The measured children, nor should we regardthem as infallible intAligence of autistic children.Journal of Autism and predictors of success or failure. We mustkeeP in Childhood Schizophrenia, 4, 42-60. mind that most of the intervention programs,such DeMyer, M. K., Barton, S., DeMyer, W. E., Norton,J. A.. have been developed only in recent Allen, J., & Steele, R.(1973),Prognosis in autism: A as TEACCH, follow-up study.Journal of Autism and Childhood year4: This is especially trueof the therapeutic and Schizophrenia, 3 , 199-246. edueational prozrarns that interveneearly in the DeMyer, M. K., Hingtgen, J. N., & Jackson, R. K.(1981). livevf young autistic children. Weshould remember, Infantile autism reviewed: A decade of research.Schiz- too, thatnumber of research projects, rangingfrom ophrenia Bulletin, 7, 388-451. currently Eisenberg, L.(1957).The fathers of autistic children. behavioral to cognitive to biochemical, are American Journal of Orthopsychiatry, 27, 715-724. being conducted. 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Ritter, M., & Bartak, L.(1973).Special education treat- ment of autistic children:A comparative study.II: Sam B. Morgan, Ph.D., is Professorof Psycholog Follow-up findings and implications forservices. Journal 14, 241-270. at Memphis State University.His clinical work an( of Child Psychology and Psychiatry, behaviora: Rutter, M., Greenfeld, D., & Lockyer,L.(1967).A.five research deal primarily with childhood to fifteen year follow-up studyof infantile psychosis: learning, and developmental disorders.He was for II.Social and behavioral outcome.British Journal of rnerly Associate Professor and Chief ofPsycholoz: Psychiatry, 113, 1183-1199. at the University of TennesseeChild Developrner. Rutter, M., & Lockyer, L.(1967). A five to fifteen year follow-up study of infantile psychosis:I.Description Center. BE.gT COPY AVAILAIti