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AUTISM Advocate THIRD ED ITION 2010, Volume 60

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“I Have a Lot to Say” Tools that Help Individuals Communicate Effectively

In this issue: Navigating the Social World Communication Assessment Speech Therapy in Natural Environments Simplifying Conversation And more...

THIRD EDITION 2010 •

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Autism Advocate 1


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contents Fall 2010

spotlight

Page 12

By Judy Endow, MSW

Navigating the Social World The Importance of Teaching and Learning the Hidden Curriculum

Photo courtesy of ATC

departments

features

Page 54

page 7

What’s New at the Autism Society »»Autism Society News »»Advocacy

Communication Assessment for Individuals with Autism Spectrum Disorder

»»Conferences

Addressing Deficits and Improving Outcomes

»»Chapter News

By Nicole Brin, M.A., CCC-SLP

page 26

A Behavioral Approach to Teaching Language

page 44

Conversation Basics

Simplifying How We Teach Conversation

What it Is and Why It’s Useful By Marla D. Saltzman, M.A., BCBA, and Kathleen Kelly

page 34

By Kerry Mehaffey Mataya, M.Ed.

page 50

Learning Each Other’s Language

Enhancing Social Communication Skills

page 16

What? Where? Who?

Strategies to Improve Communication Between Neurotypicals and Individuals on the Autism Spectrum

Social Skills Training via Simulated Environments

Teaching Young Children with Autism to Ask Wh-Questions

By John Guercio, Ph.D., BCBA-D, CBIST

By Cheryl Ostryn, Ph.D., BCBA-D

By Susan M. Wilczynski, Ph.D., BCBA

page 40

page 21

The Picture Exchange Communication System™ Helping Individuals Gain Functional Communication

Get Out of the Office

Speech Therapy in Natural Environments

By Erin Weiner, M.S., CCC-SLP

By Anne Overcash, M.Ed., Catherine Horton, M.S., CCC-SLP, and Andy Bondy, Ph.D.

AUTISM Advocate AUTISM Advocate AUTISM Advocate T H IRD E D IT IO N 2 0 10 , Volume 60

T HIR D E D IT IO N 20 0 9 , Vo lum e 56

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Finding a Home

REsIDENTIAL OPTIONs fOR INDIVIDuALs ON THE sPECTRum

Transitions in Autism

making FRIENDS

Achieving Healthy Lifestyles for People with Autism

THE CRITICAL IMPORTANCE

IN THIS ISSUE:

And more…

THIRD EDITION 2010 •

OF SOCIAL SKILLS

AUTISM ADVOCATE 1

Meaningful Planning to enhance Quality of life

IN THIS ISSUE: Research on Social Skills Training A High School Peer Mentoring Program Teaching and Supporting Social Skills at School Making Connections Online And more... FIRST EDITION 2010 •

AUTISM ADVOCATE 1

IN THIs IssUE: Involving Your Child in the Post-High school Transition Process Transitions in the Elementary Grades successfully Transitioning Between Jobs Transitions in sibling Relationships And more…

IN THIs IssuE: Addressing the Inequality of Adult Autism services Designing spaces for People with AsD What to Look for in Residential services When Your Child Leaves Home And more…

THIRD EDITION 2010 •

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Live Well

Defining Personal Quality of Life Employment and Health Keeping Fit Diet and Nutrition

AUTISM Advocate

FOURTH EDITION 2009, Volume 57

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As a member of the Autism Society, you will receive this publication. For membership information, visit www.autism-society.org/join.

F I R S T E D I T I O N 2 0 1 0 , Volume 58

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The Autism Advocate

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COVER photograph: Brendan Smialowski for the New York Times

Learning to understand and navigate the social landscape around us is essential for people to function in everyday life. For individuals on the autism spectrum, however, the skill of deciphering, incorporating and using the information all around us does not come naturally. But this social information—called the hidden curriculum—can be learned. The hidden curriculum refers to those unstated rules or customs that, if not understood, can make the world a confusing place and cause those who are not neurologically wired to automatically “get it” feel isolated and “out of it.”

Autism Advocate 3


message from the Board Chair Board of Directors

It is with great pleasure that I address you as the new Board Chair of the Autism Society. I have been a member of the Autism Society for over 25 years and have not missed a National Conference since my first one in Seattle, Washington. It is

(July 2010-July 2011)

OFFICERS: Lee Grossman, President & CEO James Ball, Ed.D., BCBA-D, Chair Jose F. Cordero, M.D., MPH, Vice Chair Sergio Mariaca, Treasurer Stephen Shore, Ed.D., Secretary

a great honor to serve as your Chair for the upcoming year, and I will work with all of you to make the Autism Society the best it can be and to uphold its mission: “Improving the lives of all affected by autism.” I would be remiss if I did not thank

BOARD MEMBERS: Jon Basinger Andrew Baumann L. Lynn Stansberry Brusnahan, Ph.D. Bob Cassidy Barbara Becker-Cottrill, Ed.D., PPA Chair

Dr. Cathy Pratt for her dedication over the past seven years as Chair. I stand in awe at all she was able to do for people with autism spectrum disorder (ASD) and

Lars Perner, Ph.D., PSA Chair Cathy Pratt, Ph.D., BCBA

HONORARY BOARD MEMBERS: Temple Grandin, Ph.D.

their families.

Ruth Christ Sullivan, Ph.D.

Autism Advocate Communication is a basic function of life that we all take for granted; however, for many individuals with ASD, it is a real struggle. This edition of the Autism Advocate takes a hard look at critical skills and addresses strategies that will assist individuals to improve their communication skills, enhance their social communication and use a variety of ways (such as pictures) to effectively communicate. We should all echo the immortal words of Walt Disney, who said, “Of all of our inventions for mass communication, pictures still speak the most

The Premier Magazine on Autism Spectrum Disorders

Publisher Lee Grossman, President and CEO

Vice President, Constituent Relations Marguerite Kirst Colston

Director of Programs Jennifer Repella

Managing Editor Robin Gurley

Media Specialist Amanda Glensky

Web Specialist Selena Middleton

Design

universally understood language.”

n2design, inc.

Advertising Sales

Thank you for your continued support of the Autism Society and enjoy this informative issue of the Advocate. I look forward to a productive year, and with your help, the best ever.

Jim Ball, Ed.D., BCBA-D CHAIR Autism Society Board of Directors

Potomac Media The Autism Advocate is a publication of the Autism Society, 4340 East-West Highway, Suite 350, Bethesda, Maryland 20814. Copyright 2010 by the Autism Society. All rights reserved. No part of this magazine may be reproduced in any form or by any electronic or mechanical means, including photocopying, recording or any information storage and retrieval system, without written permission from the publisher. The information, views and any recommendations or endorsements expressed by authors, advertisers and/or other contributors appearing in the Autism Advocate do not necessarily reflect the views, opinions or recommendations or endorsements of the Autism Society. The publication of such information and the advertisements included within the Autism Advocate do not constitute an endorsement of such information or of any treatment, product, methodology and/or service advertised. The Autism Advocate is published four times a year. To receive the publication, please join the Autism Society. For more information, please visit www.autism-society.org. To contact the editor, please e-mail editor@autism-society.org. If you are interested in advertising in the Autism Advocate, please contact Reem Nourallah at 202-363-3740 or Potompub@aol.com. All other inquiries should be directed to: Autism Society 4340 East-West Highway, Suite 350 Bethesda, Maryland 20814 Toll free: 1-800-3AUTISM | Fax: 301-657-0869 www.autism-society.org

4 Autism Advocate

• THIRD EDITION 2010


THIRD EDITION 2010 •

Autism Advocate 5


message from the autism society Panel of Professional Advisors

Panel of Professional Advisors Barbara Becker-Cottrill, Ed.D. (Chairperson)

It was an honor to share time with my colleagues on the Panel of Professional Advisors at the Autism Society National Conference in Dallas this past July. It is an amazing group of people, each dedicated to making a difference in the lives of all

James Ball, Ed.D., BCBA-D Margaret L. Bauman, M.D. Lois J. Blackwell Eric Courchesne, Ph.D. Margaret Creedon, Ph.D. Geraldine Dawson, Ph.D.

affected by autism. We had the opportunity to have a working meeting where we

Anne M. Donnellan, Ph.D.

explored current issues and topics, and formed working groups around them. We

V. Mark Durand, Ph.D.

look forward to sharing the outcomes and products of these groups throughout the

Glen Dunlap, Ph.D. William L.E. Dussault, J.D. Stephen M. Edelson, Ph.D.

coming year. I must also add that the Panel of People on the Spectrum of Autism

Judith E. Favell, Ph.D.

and the Panel of Professional Advisors co-presentation at the conference was not to

Temple Grandin, Ph.D.

Peter Gerhardt, Ed.D. Doreen Granpeesheh, Ph.D., BCBA

be missed. Be sure to mark your calendars for next year’s presentation in Orlando.

June Groden, Ph.D. Paul Millard Hardy, M.D.

This issue of the Autism Advocate includes articles from an exceptional group of authors in the area of communication. It is an issue you will want to read from cover to cover. Filled with practical information and strategies, it covers relevant topics in the area of communication for individuals across the autism spectrum.

Robert L. Hendren, D.O. Martha Herbert, M.D., Ph.D. Jill Hinton, Ph.D. Ann Holmes, M.S., C.C.C., BCBA David L. Holmes, Ed.D. Susan Kabot, Ed.D., CCC-SLP Martin Kozloff, Ph.D. Rebecca Landa, Ph.D., CCC-SLP

From assessment to evidence-based procedures, this issue takes a comprehensive look at what we know today about teaching and supporting individuals on the autism spectrum in the skill of communicating. Included is the important topic of enhancing social communication skills, and teaching and learning the “hidden curriculum.” Family members, professionals, friends and acquaintances of individuals with autism spectrum disorders are guaranteed to take away valuable and useful information from each article. This is an issue you will continue to refer

Gary LaVigna, Ph.D. Bennett L. Leventhal, M.D. Brenda Smith Myles, Ph.D. Cathy Pratt, Ph.D., BCBA Edward Ritvo, M.D. Frank Robbins, Ph.D. Stephen Shore, Ed.D. Ruth Christ Sullivan, Ph.D. Luke Y. Tsai, M.D. Diane Twachtman-Cullen, Ph.D.,CCC-SLP Jennifer Twachtman-Reilly, M.S., CCC-SLP Margaret Whelan Michelle Garcia Winner, M.A., CCC-SLP

to for a long time to come. Enjoy!

Harry Wright, M.D., MBA

Emeritus Members Edward Carr, Ph.D., BCBA (1947-2009) O. Ivar Lovaas, Ph.D. (1927-2010) Gary Mesibov, Ph.D.

Barbara Becker-Cottrill, Ed.D. PPA Chair

Bernard Rimland, Ph.D. (1928-2006) Eric Schopler, Ph.D. (1927-2006)

Panel of People on the Spectrum of Autism Advisors (PSA) Lars Perner, Ph.D. (Chairperson) Dena Gassner, MSW Sharisa Joy Kochmeister Sondra Williams Zosia Zaks, M.Ed.

6 Autism Advocate

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feature Communication Assessment [

Communication Assessment for Individuals with Autism Spectrum Disorder Addressing Deficits and Improving Outcomes By Nicole Brin, M.A., CCC-SLP

C o m m u n i cat i o n i s an i m p o r tant c o m m o n t h r e a d t h r o u g h t h e h u m an r ac e . P e o pl e f r o m

This critical skill is an area of significant deficits for people with autism spectrum disorders (ASD). Quality evaluation of

all r e g i o ns o f t h e w o r l d g e t t h e i r e m o t i o nal

communication skills, conducted by

an d p h y s i cal n e e d s m e t b y c o m m u n i cat i n g

a licensed, certified speech-language

wi t h ot h e r s .

pathologist (SLP), is necessary in order to address these deficits.

Communication Skill Development Communication is a learned skill. Expectations change along with age and development. Typically developing infants naturally learn to communicate through observation. More advanced communicators develop more complex skills via direct teaching and feedback from

THIRD EDITION 2010 •

Autism Advocate 7


]

Communication Assessment

The Process of Communication Skill Development Early Communicator Learns to communicate through cause-and-effect relationships

School-age Communicator Builds new communication skills through direct teach and practice

Adult Communicator Builds new, advanced communication skills through self-study or rule-based written guidelines

Example: Babies learn to cry to communicate a variety of needs. They may cry when hungry, wet, dirty, sleepy, etc. They learn quickly that crying results in a communication partner coming to them to help get their needs met.

Example: The first several weeks of school (pre-K through 12th grade) are spent learning classroom routines and grade-level rules. • When is it okay to raise your hand? • When is it okay to talk to the people at your table? •How do you get your needs met in the classroom? Example: A new high school graduate learns the communication expectations at her new job through observation as well as through direct teaching. • When to use and how to understand implied meanings and socially acceptable emphasis when sending professional emails. • What details are appropriate to communicate with your supervisor. • How to communicate during breaks with acquaintances in the work environment. • Understanding the company’s etiquette guide for new hires. These handbooks typically teach the new hire expected social expectations such as how to answer the phone and when/how to greet others around the facility.

Table 1

Bridwell & Brin (in press)

others in their environment. Table 1

• Does not participate in joint

(above) depicts examples of the process

attention (does not understand or use

of communication skill development at

referencing)

each stage.

• Appears to lack desire to communicate

With early communicators, caregivers

with peers about a variety of topics

are often the first reporters of red flags.

• Exhibits communication that appears

Concerns are typically shared with pediatricians during their child’s well checkup visits. Some of the most common red flags for communication disorders that may warrant further assessment by an autism assessment team include the following:

Possible red flags in the area of communication with early communicators: • Does not respond when name is called • Does not participate in early social communication interactions/play • Has difficulty expressing wants clearly • Makes attempts to communicate that are extremely difficult to interpret

to be “scripted” or “borrowed” • Displays a speech/language disorder that pervasively impacts social communication as well as pragmatic language skills (Filipek et al., 1999)

Possible red flags in the area of communication with adolescents and adults: • Has history of the above communication deficits and/or continued deficits • Talks “at” listeners; does not engage in give-and-take with communication partner • Often talks about intense interests;

a useful way (i.e., taking notes in class, understanding projects at work) • Has difficulty initiating and ending conversations; peers or co-workers typically initiate and end conversations • Does not understand non-verbal language and how to modulate communicative behaviors based on this real-time input • Does not use clear communicative and logic skills to verbally problem solve social situations, and describe healthy friendships and relationships (Bridwell & Brin, in press)

A Team Evaluation A certified and licensed speech-language pathologist (SLP) specializes in evaluation and treatment of both language as well as communication skills, and therefore is a key person in the autism assessment

communication skills improve

process. An SLP is the “communication

• Does not follow directions

significantly when talking about

expert” and an essential team member

• Appears to be deaf or heard of hearing

intense interests

when determining a client’s strengths

• Does not point/use gestures in a communicative fashion 8 Autism Advocate

• THIRD EDITION 2010

• H  as difficulty understanding directions/

and weaknesses in this area; however,

information and organizing things in

it is always preferable to have a team


Communication Assessment [

of professionals when evaluating an

than the direct suppression of negative

individual for an ASD. The preferred team

behaviors. It takes a team, including an

that I typically practice with includes

SLP, to determine the effectiveness and

the following professionals who are also

communicative intent of the client, and a

experts in the area of autism: educational

behavioral specialist, such as a psychologist,

diagnostician, psychologist, occupational

to help determine the origin of the

therapist and additional experts as needed.

behaviors. Additionally, motor and sensory

It takes a team of professionals who are experts in ASD to piece together the complex puzzle that unfolds during an

concerns can complicate the diagnostic picture; therefore, it is important that the team include an occupational therapist.

evaluation. Indeed, the American Academy

In many cases, communication strengths

of Pediatrics supports the idea that in order

and weaknesses are directly impacted by

to gain a “whole picture” of the client’s

responses to the environment or physical

abilities and how communication skills may

needs. For example, a child may have the

affect other areas of functioning for the

ability and knowledge to listen to their

client, ASD evaluations should be done by a

peers during group activities; however,

Data-Gathering Process for Evaluation Infant through School-Age • Review of records • Parent interview • Observation in multiple environments • School staff interviews (if school age) • Diagnostic interview with client (if school age) • Direct assessment with autism team • Direct assessment for speech and language skills • Scoring and interpreting diagnostic interview with assessment team of professionals • Family de-briefing • Student de-briefing (older students) • School staff de-briefing • Staff and family initial training

team of experienced professionals (Johnson, they may not be able to concentrate on the activity at hand because they feel the Myers, & the Council on Children with Disabilities, 2007). It is recommended that

need for movement. This need may begin

the team include experts in the interplay

to override the ability to participate in the

among sensorimotor functioning, behavior,

lesson. It takes a team of professionals to

social/emotional development, and a

determine the antecedent of the behaviors

child’s ability to communicate and use

and to look at the client from a “whole

language in an effective manner. Qualified

person” perspective, not only from their

autism assessment teams may be found

area of specialty.

in all service delivery environments, including public schools, private practices and physician groups. It is the caregiver’s responsibility to investigate the team’s range of qualifications and experience prior to assessment.

Evaluating and Assessing Communication Abilities

Adults • Review of records • Observation in multiple environments • Interview client’s supervisor and/or co-workers • Diagnostic interview with client • Direct assessment with autism team • Direct assessment for speech and language skills • Scoring and interpreting diagnostic interview with assessment team of professionals • Client de-briefing • Initial training Table 2

Bridwell & Brin (in press)

No matter where the person falls on the autism continuum, communication is

communication and spoken language.

a known deficit area. According to the

These observations appear to be supported

current diagnostic manual, the DSM-IV-TR,

by the recommended revisions to the DSM.

Consider the complexity that behavior

the communication deficits must impact

The current draft of the DSM-V (to be

adds to an evaluation. Behavior problems

spoken language, pragmatic language and

published in 2013) combines the Pervasive

are often the reason why students are

quality of overall language (including play

Developmental Disorders, which includes

referred for evaluation. Behavior and

skills, social communication and varied

Asperger’s, into one category—Autism

communication directly impact each other,

use of language) in order to diagnose

Spectrum Disorder. Characteristics of

leading to the question, “Which came

“Autistic Disorder” (APA, 2000). In contrast,

Autism Spectrum Disorder include deficits

first, the lack of communicative ability

the DSM-IV-TR states that those who

or the perceived negative behaviors?”

have Asperger’s Disorder do not exhibit

Often, deficits in communication skills

a “clinically significant general delay in

Table 2 (above) lists methods that an

manifest as behavior difficulties. It is

language.” Experience indicates that

SLP may use to gather necessary data for

critical to determine when this is the

individuals with Asperger’s Disorder do

determining communication skill strengths

case because intervention must target the

have impaired communication skills in

and weaknesses for diagnosis and possible

underlying communication deficits rather

the areas of pragmatic language, social

intervention planning.

in social communication and interactions.

THIRD EDITION 2010 •

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]

Communication Assessment

A true team effort between those who know the client best (caregivers/family

The SLP should provide a comprehensive assessment as part of the autism evaluation.

members/individual with autism) and the transdisciplinary team of autism experts who know the disorder will result in better outcomes from the assessment

As the “communication expert,” the SLP

one cannot effectively determine if a

process. Communication is at the heart of

should take part in all of the assessment

client has a communication skill deficit

the ASD profile and must be addressed on

activities listed above. When all of these

based solely on standardized assessment

an ongoing basis. Communication skills

activities are included in an autism

scores. All data collected throughout the

change over time (especially with early

evaluation, the transdisciplinary team

assessment activities (described in Table 2)

intervention); therefore, assessment for

has the opportunity to obtain data on

should be used to determine if the client’s

intervention is a lifelong necessity for

communication skills negatively impact

people with ASD.

their functioning in the world.

References

both functional and standardized skills across all area(s) of concern, including communication. The SLP should provide a comprehensive assessment as part of the autism evaluation. Testing tools used to gather this data include screeners, standardized assessment, qualitative measures, observation and records review. There is not one single

A comprehensive assessment of

American Psychiatric Association. (2000).

communication skills enables the SLP to

Diagnostic and statistical manual of

develop meaningful recommendations

mental disorders, 4th edition, text revision.

for caregivers, school staff and/or the

Washington, DC: American Psychiatric

adult client. Open communication among

Association.

all people involved in the assessment

Bridwell and Brin (in press). Speech and

testing tool that can determine an ASD

process is essential to developing

diagnosis or eligibility. In the same respect,

accurate assessment conclusions as

there is not one single tool that enables

well as meaningful interventions/

evaluation of autism spectrum disorders:

the SLP to gather all needed data about

recommendations. Table 3 (below) lays

From diagnosis through program planning,

communicative competence as a part of

out the areas of focus in a communication

Shawnee Mission, Kan.: Autism Asperger

an autism assessment team. For instance,

assessment.

Publishing Company.

Communication Assessment Areas of Focus Non-verbal Language

Understanding

Aspy, & B. Myles (Eds.). Transdisciplinary

Filipek, P.A., Accardo, P.J., Baranek, G.T., Cook, E.H., Dawson, G., Gordon, B., Gravel,

Use

J.S., Johnson, C.P., Kallen, R.J., & Levy, S.E., et al. (1999). The screening and diagnosis

Speech Characteristics Expressive Language Skills

language evaluation. In B. Grossman, R.

Pragmatic language

Oral narration

Repetitive and/or stereotyped use of language

of autistic spectrum disorders. Journal of Autism and Developmental Disorders, 29(6):439-484.

Receptive Language Skills

Johnson, C.P., Myers, S.M., & the Council

Fluency (verbal)

on Children with Disabilities. (2007). Identification and evaluation of children

Voice Table 3

Bridwell & Brin (in press)

About the Author nicole Brin, M.A., CCC-SLP

with autism spectrum disorders. Pediatrics, 120, 5.

Nicole Brin, M.A., CCC-SLP, practices therapeutic interventions in a pediatric outpatient setting and participates on a transdisciplinary autism assessment team through The Ziggurat Group in Dallas, Texas. 10 Autism Advocate

• THIRD EDITION 2010


Practical Solutions from AAPC Countless studies have shown that differences in communication skills are a core characteristic of individuals with autism spectrum disorders. Among its wide selection of titles, AAPC offers essential books and other materials for parents, teachers, speechlanguage pathologists and others to fit the needs of any child on the spectrum. Let our resources help develop and cultivate communication skills both at home and in the classroom. Visit www.asperger.net or call toll free 877-277-8254 to learn more about AAPC’s practical solutions.

Initiations and Interactions: Early Intervention Techniques for Parents of Children with Autism Spectrum Disorders By Teresa A. Cardon, M.A., CCC-SLP Strategies at Hand: Quick and Handy Positive Behavior Support Strategies es s nc re gie ns fe te tio ra Re en St rv ns s/ te rm tio In Te en e iv rv ns te te In In ed et rg Ta

U ni ve rs al

In te rv en tio ns

By Tracy Mueller, Ph.D., and Robin Brewer, Ed.D. Improving Speech and Eating Skills in Children with Autism Spectrum Disorders: An Oral-Motor Program for Home and School By Maureen A. Flanagan, M.A., CCC-SLP

www.asperger.net 877-277-8254 (phone) 913-681-9473 (fax) THIRD EDITION 2010 •

Autism Advocate 11


spotlight

O

ne of the key elements for all of us to get along in daily life is our understanding of and ability to navigate the

social landscape in the world around us. How we actually do this is referred to as our social skills. For those of us with autism, like me, it is said that we lack social skills–that is, we fall below the acceptable social standard, not displaying the myriad of social skills that seem to come automatically to most people. The reason for this is our autism neurology, meaning that unlike typical people, our brains are not wired to enable us to automatically pick up, incorporate and then effectively use the often elusive and transient information that is all around us. This information is called the “hidden curriculum.”

What is the Hidden Curriculum?

Navigating the

The hidden curriculum is based on the

Social

work of autism researcher Brenda Smith Myles. It is the social information that is not directly taught but is assumed that everybody knows (Myles, Trautman, &

World

Schelvan, 2004). The hidden curriculum refers to those unstated rules or customs that, if not understood, can make the world a confusing place and cause those

The Importance of Teaching and Learning the Hidden Curriculum

of us who are not neurologically wired to automatically “get it” feel isolated and “out of it” (Endow, 2009a, 2010). In fact, whenever you think or say things like

12 Autism Advocate

• THIRD EDITION 2010

Photo courtesy of ATC

By Judy Endow, MSW

“everybody knows…,” “common sense tells you…,” “it is quite obvious that…” or “I shouldn’t have to tell you, but…”, that is the hidden curriculum. As an adult with autism,


spotlight [

I have learned that whenever somebody says one of these phrases what is coming next is an explanation of some sort of social sin I have committed. Not understanding the hidden curriculum contributes to the often pervasive feeling that goes far beyond not fitting in, to feeling that you are not part of the human race. During my growing up years, I believed for a long time that I was an alien (Endow, 2006, 2009b). For me, the most difficult part of having someone notice my social missteps is the underlying assumptions others then make about me. Here are two examples.

EXAMPLE #1 The bakery lady at my grocery store chased me down shouting, “What is wrong with you?” when I merely took free cookies like the sign indicated. The hidden curriculum item that I was unaware of was when the sign in a bakery says, “free cookies” (even though the word “cookies” is plural), it means only one cookie per person (Endow, 2009b). Although I never would have taken more than one cookie had I known, it was nonetheless assumed by the bakery lady that I had intentionally taken more than my fair share. Another customer commented aloud for all to hear, “What a pig!” It felt awful to know I was thought of in this way, even if it was by strangers. I am not a thief or a pig, even though I did take more than my share of free cookies. I am not an inherently bad person, but because of my behavior I was a social outcast in the moment. When I make a misstep with acquaintances, it can be even worse. It means I may be forever banned from the group. Many times I never have a clue as to what I did, other than figuring out I must have committed yet another unforgivable social sin.

EXAMPLE #2 When the police officer asked why I was speeding, I answered as truthfully as possible by saying that I had depressed the accelerator with more force than needed to achieve the posted speed. I was not trying to be a smart aleck with the officer—something that could make a bad situation even worse. At the time I was wondering how this guy ever graduated from the police academy without understanding how speeding occurs, but knew it would be disrespectful to say so having previously learned the hidden curriculum dictates to always be respectful to police officers. What I did not know was the additional hidden curriculum rule that says if you are stopped for speeding it is best to apologize and promise to be more careful from now on. Even though my behavior pegged me as a smart aleck, and could have gotten me into even more legal trouble, I am not a smart aleck or a speed demon. I have gotten a total of three speeding tickets over 40 years of driving.

The consequences of committing social sins can be anything from loss of friends

Rules Change Due to Variables A difficult thing about social rules is that they are often a moving target. The rules change depending on a whole host of variables, such as age, who you are with, gender, culture and circumstance. For example, a child might be taught that when someone says “hi” to you in the school hall, it is polite to say “hi” back (Myles & Duncan, 2008). After school, the child is in a totally different social situation where safety dictates he should not say “hi” or talk to an adult stranger who approaches him as he walks home. Different circumstances dictate employing what can seem like conflicting rules. So, even if you know many of the hidden curriculum rules, it is not always easy to know which rule to follow when.

Age Age is a variable that can get both kids and

to legal troubles with a resultant criminal

adults on the autism spectrum in trouble if

record, depending on your age. Not

they have not learned the changing hidden

understanding and following the rules of

curriculum rules as they grow up. Little

the hidden curriculum negatively impacts

kids often hold hands when they walk

social functioning in all areas of life—home,

together in public places, but if a third-

community, school and workplace.

grader tried to hold the hand of a classmate

Students are at a disadvantage in school

he could be teased and laughed at by peers.

with a resulting negative impact on their education. Adults often lose more than friends when they do not understand and abide by the social rules of society. Some

If a high school student or an adult tried to hold hands with someone, romantic interest would be attributed to the act regardless of the intent. This could go bad either way. The recipient might return the assumed

have lost their homes and jobs, and others

romantic interest with a sexual overture

have been incarcerated as a result of not

or, if appalled by the interest, the person

behaving according to the rules of the

might shout, swear or be physically abusive.

hidden curriculum.

Learning the hidden curriculum for those THIRD EDITION 2010 •

Autism Advocate 13


spotlight

of us with autism never stops. It is a lifelong

your young student as a grown man if you

endeavor.

do not teach him the hidden curriculum

There can also be serious legal

for using the men’s room. Therefore, if you

ramifications depending on one’s age. If a child peers into the bedroom window of his

When a person’s brain is not wired to automatically pick up this information, he will not somehow magically learn it as he gets older.

are a female professional supporting a male student, make sure you know and instruct your student how to behave in the restroom according to his gender—not yours.

Teaching the Hidden Curriculum For people on the autism spectrum, learning the hidden curriculum is just

friend’s home, it might be okay. The worst thing that might happen is somebody telling him it is not nice to look in someone’s window; one should ring the door bell instead. However, if an adult does the same thing, it is very likely the police would be called and an arrest might result.

14 Autism Advocate

• THIRD EDITION 2010

as, if not more important, than learning academic skills. Yet, I rarely see hidden curriculum or social skills instruction in class schedules or in the IEPs of students needing to learn it. When a person’s brain is not wired to automatically pick up this information, he will not somehow magically learn it as he gets older. It is not something

Gender

our students with ASDs will outgrow.

Gender is another variable in the world of

Instead, the hidden curriculum must be

social rules. This can be quite important

taught by direct instruction to students who

because we have a large population of male

have a neurology that does not permit them

students with ASD in our schools that are

to automatically learn it in the same way

supported by female professionals. There

neurotypical students do.

are gender-specific hidden curriculum

The ECLIPSE Model (Moyer, 2009) is a

standards specifically for males, such as

useful resource for teachers that includes

restroom etiquette rules, that are very

sample IEP goals along with “pick up and

different from the restroom rules for

use” lesson plans for teaching the hidden

females. Females talk in the restroom;

curriculum. The Social Times (Buron, 2010)

males don’t. If your young male student is

is another resource for teachers, which is

conditioned to talk to you in the restroom,

written directly to students in their “voice.”

he may grow up talking to others in the

Each new issue offers critical information

restroom. If he does this as a teen or a man,

in a format that makes learning social

whether he knows it or not, talking or even

information fun for students. Another way

just making eye contact in a public men’s

to teach and learn the hidden curriculum is

room can be perceived as initiating sexual

by using the One A Day hidden curriculum

interest. Imagine the consequences for

calendars, geared to both kids (Trautman


& Wragge, 2010) and older adolescents and adults (Endow, 2010). In addition, hidden curriculum items are available as iPhone applications for all ages. However you choose to teach the hidden

If you are a person on the autism spectrum, know that you will need to keep learning the hidden curriculum as you graduate from school and move into the world.

curriculum, know that learning it is not optional for those of us with autism. If you are a teacher, know that the hidden curriculum is likely the most important subject you will ever teach. Your school district will not mandate it, but wise teachers will make teaching it a priority. If you are a person on the autism spectrum, know that you will need to keep learning the hidden curriculum as you graduate from school and move into the world. It is great to have earned a diploma, but you must not stop there. A diploma is merely the first step into adult life. For me,

References Buron, K.D. (2010). The Social Times. Shawnee Mission, Kan.: Autism Asperger Publishing Company.

Moyer, S. (2009). The ECLIPSE Model: Teaching Self-Regulation, Executive Function, Attribution, and Sensory Awareness to Students with Asperger Syndrome, HighFunctioning Autism, and Related Disorders.

Endow, J. (2006). Making Lemonade: Hints

Shawnee Mission, Kan.: Autism Asperger

for Autism’s Helpers. Cambridge, Wis.:

Publishing Company.

Cambridge Book Review Press.

Myles, B.S., & Duncan, M. (2008). 2009

Endow, J. (2009a). 2010 Hidden Curriculum

Hidden Curriculum One-A-Day Calendar.

One-A-Day Calendar for Older Adolescents

Shawnee Mission, Kan.: Autism Asperger

and Adults. Shawnee Mission, Kan.: Autism

Publishing Company.

Asperger Publishing Company.

Myles, B.S., Trautman, M.L. & Schelvan, R.S.

Endow, J. (2009b). Paper Words: Discovering

(2004). The Hidden Curriculum: Practical

and Living with My Autism. Shawnee

Solutions for Understanding Unstated Rules

Mission, Kan.: Autism Asperger Publishing

in Social Situations. Shawnee Mission, Kan.:

Company.

Autism Asperger Publishing Company.

my job and in my community, and lets me

Endow, J. (2010). 2011 Hidden Curriculum

Trautman, M., & Wragge, A. (2010). 2011

be all that I want to be in the world.

One-A-Day Calendar for Older Adolescents

Hidden Curriculum One-A-Day Calendar

and Adults. Shawnee Mission, Kan.: Autism

for Kids. Shawnee Mission, Kan.: Autism

Asperger Publishing Company.

Asperger Publishing Company.

keeping up with and learning new, elusive and ever-changing hidden curriculum items is crucial. It allows me to fit in more comfortably with my family and friends, in

About the Author Judy endow, MSW Judy Endow, MSW, maintains a private practice in Madison, Wis., providing consultation for families, school districts and other agencies. Besides having autism herself, she is the parent of three grown sons, one of whom is on the autism spectrum. Judy presents on a variety of autism-related issues, serves on the Wisconsin DPI Statewide Autism Training Team, and is a board member of the Autism Society Wisconsin Chapter and an incoming board member of AUTCOM.

THIRD EDITION 2010 •

Autism Advocate 15


feature ]

Teaching Young Children

wha

w

t

ho

wh e re

illustration courtesy of istock[hoto

What? Where? Who?

Teaching Young Children with Autism to Ask Wh-Questions

Yo u s e e a n e w, b i g b o x i n t h e c o r n e r o f t h e p r e sc h o o l an d s o m e t h i n g i ns i d e i t i s m ak i n g n o i s e . Yo u want t o c o l o r , b u t yo u can ’ t f i n d yo u r fav o r i t e g r e e n c r ayo n . Yo u a r e h u n g r y, b u t f o r g o t w h o t h e “ snack capta i n ” i s t o d ay.

By Cheryl Ostryn, Ph.D., BCBA-D

In order to solve all of these communication problems, you need to be able to gain

16 Autism Advocate

• THIRD EDITION 2010

other caregivers can create opportunities to teach young children to ask wh-questions.

information by asking questions, such as:

Why are Wh-Questions Important?

“What is that box/noise?” “Where is my

Anyone who has been around young

crayon?” and “Who is the ‘snack captain’?”

children knows that a majority of their

By using everyday routines, teachers and

verbal communications are comprised of


Teaching Young Children [

questions, such as “What’s that?” “Where is it?” Who is that?” “When are we there?” and “Why did it do that?” However, young children with autism and developmental

Motivation (EO)

THIRSTY

disabilities may not naturally learn how

Behavior

SAY ‘CUP’

Consequence

DRINK MILK

to ask these questions and may need to be explicitly taught. Typically, when

Figure 1

young children hear questions in close association to what is happening in their social environments, they learn how to communicate using questions and also understand how helpful questions are to finding out information. Having the ability to achieve a goal, such as being able to ask where a favorite toy is located, is known as functional communication. By asking “Where is my teddy bear?” the response, “It’s on the bed” achieves the goal of attaining information related to the bear’s whereabouts.

Having the ability to achieve a goal, such as being able to ask where a favorite toy is located, is known as functional communication. information as to who is in charge of the

to ask wh-questions simply expands upon

snack, but not necessarily for the snack

this by using establishing operations, which

itself. Therefore, wh-questions can be

are basically a source of motivation for a

thought of as a two-step procedure:

behavior to occur. For instance, being really,

1.  to request necessary information in

really thirsty will make me (motivate me)

order to

want to ask for a drink (see Figure 1 above).

2.  achieve a goal (e.g., item, attention)

Using this method, young children can be

of young children’s social and emotional

The first part of this two-step procedure

motivated to ask wh-questions. For instance,

development as it allows them to actively

is social in nature and typically needs a

engage in communication exchanges in

verbal response from another person.

a reciprocal fashion, gather important

For instance, another person needs to

information about one’s social environment

supply the answer to the question, such

and form friendships. On a related note,

as providing the name of the item in the

essential information about one’s social

box or the name of the peer on snack duty.

world is acquired with questions such as,

However, research heavily documents

“Where’s Marci?” “What do you want to

that many children with language delays

play?” or “Who do you want to play—Mama

and developmental disabilities have social

Bear?”

deficits and therefore are unlikely to engage

Question asking is an essential ingredient

Questions are Requests or Mands (Demands) for Information

in question-asking behavior because they are not socially motivated (Neisworth & Wolfe, 2005; Scott, Clark, & Brady, 2000).

Specifically, wh-questions are requests for instance, asking “Where is my teddy bear?”

How to Motivate Young Children to Ask Questions

is asking for information about the bear’s

Educators and caregivers can motivate

location and not actually a request for the

young children to ask wh-questions by

bear, even though it is likely the question

pairing reinforcement (something good)

is being asked because the bear is wanted.

with asking the question. Children with

Similarly, “What’s in the box?” is a request

autism and developmental disabilities

for information about what is in the box,

typically ask for items by saying item names,

and “Who has my snack?” is a request for

such as “cup” for drink, so teaching them

information about items and people. For

the loss of my favorite doll will motivate me to ask where it is, as I have learned that when I ask where it is, someone will tell me where it is, and then I can get it and play with my doll again (reinforcement) (see Figure 2 on next page). Using specific and child-related establishing operations, children can be motivated to engage in the two-step procedure.

Integrating Wh-Questions into the Classroom The following section details how to incorporate teaching wh-questions into everyday classroom routines. For example, in Miss Katy’s preschool class, there are three children with autism. Miss Katy will use the ASKED procedure to help her students learn to ask wh-questions throughout the school day. The steps that make up the ASKED approach are as follows:

• Assimilate a list of the children’s favorite items/activities THIRD EDITION 2010 •

Autism Advocate 17


]

Teaching Young Children

she will work with Adrian, Kaleem and

An example for motivating the “Where?” question: (1) to request necessary information Motivation (EO)

Behavior

Can’t find favorite doll

Ask where is my doll?

(2) achieve a goal

Information to retrieve doll

Behavior

Consequence

Hungry

Ask who has my snack?

Told helper’s name

so their learning environments stay positive asking skills.

(2) achieve a goal

Motivation (EO)

students to always get the correct answer while they are practicing their question-

An example for motivating the “Who?” question: (1) to request necessary information

Katy makes sure to encourage correct answers by prompting, as she wants her

Consequence

Told doll’s location

Sasha separately on question-asking. Miss

Teaching Sasha to ask “What?” Miss Katy goes over to Sasha in the music

Information to get snack

corner and sits next to her. Miss Katy opens the cupboard and brings out an unfamiliar red box and shakes it so Sasha can hear a ringing sound. Sasha gets up to grab the

Figure 2

box, but Miss Katy blocks Sasha’s hand and prompts her to say, “What’s that?” Once

• Set up the classroom

Set up the Classroom

• Kick off the question-asking

Next, before the children come into class, Miss

• Encourage correct responses

Katy spends about 15 minutes setting up her classroom in order to arrange objects so the

(if necessary)

children will be motivated to ask questions.

• Data collection

This step includes moving objects from their

Assimilate a List of the Children’s Favorite Items and Activities First, Miss Katy constructs a list of her students’ favorite toys, objects and activities.

usual places, locking favorite toys in the cupboards, placing snacks out of sight and emptying boxes that typically contain toys.

information gathered from their parents/

Kick off the Question-Asking and Encourage Correct Responses (if Necessary)

caregivers as well as from being in the

Miss Katy decides that once the children

classroom with them. Figure 3 (below) is an

are settled with their selected activities at

example of this list.

their chosen stations around the classroom,

She knows what the children prefer from

List of Preferred Activities, Objects, and Edibles Student Adrian

Kaleem

Objects

Edibles

Sand Play

Koosh Balls

Chips

Water Play

Plastic Tubes

Dried Mango

Puzzles

Bouncy Balls

Trains

Crackers Fire Engine

Elmo Card Game

Sasha

Talking Piggy Bank Cutting

Figure 3

18 Autism Advocate

• THIRD EDITION 2010

“Wow, it’s a big silver bell.” Sasha tries to grab the bell, but Miss Katy does not give it to her until she says “want bell.”

Teaching Adrian to ask “Where?” Miss Katy approaches Adrian who is standing by the water play station. Miss Katy picks up the box that typically contains the water toys (including Adrian’s favorite plastic tubes), says, “Get the water tubes” and passes the box to Adrian. Adrian opens the box to find it empty and Miss Katy verbally prompts, “Where… (are the tubes/my tubes/tubes)?” Once Adrian plastic tubes are under the blanket.” Miss Katy then shows the plastic tubes to Adrian, says, “Want tubes?” and gives them to him. Adrian then puts them in the water.

Teaching Kaleem to ask “Who?” Miss Katy walks over to Kaleem who is

Chocolate Musical Instruments

opens the box, takes out the item and says,

imitates the question, Miss Katy says, “The

Activities

Play-Doh

Sasha imitates the question, Miss Katy

M&Ms Crackers

tugging at the locked cupboard doors and repeatedly saying, “Want puzzle, want puzzle.” Miss Katy sits Kaleem on the floor and says, “The puzzles are in the locked


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THIRD EDITION 2010 •

Autism Advocate 19


]

Teaching Young Children

Daily Data Sheet: Day 2 of Teaching

cupboard and the helper has the key.” Miss Katy then prompts Kaleem to ask, “Who…

Target Question

Opportunities Presented

Spontaneous Correct Responses

Average Daily Verbal Prompting Level

What

2

1

x1 prompt

Where

1

0

x3 prompts

the key so the door can be unlocked and he

Who

-

-

-

can play with his favorite puzzle.

What

1

0

x2 prompts

Where

1

0

x2 prompts

Data Collection

Who

1

1

-

Miss Katy continues to initiate question-

What

3

1

x1 prompt

Where

-

-

-

Who

1

0

x4 prompts

(has the key/has key/key)?” Once Kaleem asks the question, Miss Katy tells him

Student

that Shannon the helper has the key and he should get it from her. Miss Katy then guides Kaleem to Shannon. Kaleem asks for

Adrian

Kaleem

asking situations throughout the rest of the school day. At the end of the day, Miss Katy finds it hard to remember all of the questionasking opportunities for all three students,

Sasha Figure 4

so she records the responses on a simple

opportunities throughout the day to

children know how to ask questions,

daily data sheet as shown on the right.

practice question-asking.

they can become active participants in

At the end of each week, Miss Katy then adds up the weekly opportunities, correct responses and prompting levels so she can chart her students’ progress. By collecting this data, Miss Katy can also see if any of her students need extra help or more

Helpful Hints for Setting up the Classroom When planning ways to set up scenarios for your students, ask yourself the following questions:

• What can I move? • What can I lock away? • What can I take away? • Where can I put this? • Where can I hide this? • What can I put in here? • Who can I give this to? • What can I hide?

Language Ability Considerations It is important to remember that each child

conversations and social exchanges, giving them more freedom to become functional, competent communicators (Ostryn, Wolfe,

presents individual language needs; therefore, & Rusch, 2008). individualized correct responses need to be defined for each child. For instance, one child

References

may be able to ask, “Where is my dinosaur?”

Neisworth, J.T., & Wolfe, P.S. (2005). The

where as another child may only be able

autism encyclopedia. Baltimore, Md.: Paul

to ask, “Where dino?” Similarly, one child

H. Brookes Publishing Company.

may be able to say, “I want the key,” whereas

Ostryn, C., Wolfe, P.S., & Rusch, F.R.

another child may only be able to say, “key.”

(2008). A review and analysis of the

Educators and caregivers need to make

Picture Exchange Communication System

decisions on language development based

(PECS) for individuals with autism

upon specific needs.

spectrum disorders using a paradigm of

Using this method to teach children with

communication competence. Research &

autism and developmental disabilities to

Practice for Persons with Severe Disabilities,

ask wh-questions can, and should, be used

33(1-2):13-24.

in different settings and with different

Scott, J., Clark, C., & Brady, M. (2000).

people to provide opportunities for practice

Students with autism. San Diego, Calif.:

and promote generalization. When young

Singular Publishing.

About the Author Cheryl Ostryn, ph.d., bcba-d Cheryl Ostryn, Ph.D., BCBA-D., is a board certified behavior analyst and a researcher in the field of autism at the University of Colorado Denver. She has authored several articles on working with students with autism spectrum disorders, as well as teaching undergraduate and graduate classes. She would like to acknowledge that part of the research for this article was funded by a national grant award from the Organization for Autism Research. 20 Autism Advocate

• THIRD EDITION 2010


feature Functional Communication [

C o m m u n i cat i o n i s a sk i ll t h at m an y o f u s tak e f o r g r ant e d . H owe ver , fo r p e r s o ns w i t h a u t i s m sp e ct r u m d i s o r d e r s ( A S D) an d/o r

photo courtesy of istockphoto.com

r e lat e d d i sab i l i t i e s , co m m u n i cat i o n can b e e x t r e m e ly d i ff i c u lt an d f r u st r at i n g .

The Picture Exchange Communication System™ Helping Individuals Gain Functional Communication

By Anne Overcash, M.Ed., Catherine Horton, M.S., CCC-SLP, and Andy Bondy, Ph.D.

Some individuals may be unable to communicate via speech. Others may use spoken utterances that listeners cannot understand because they are unintelligible. Still, others are unable to initiate communication because they do not understand that they have the power to “go first” in a communicative exchange. The Picture Exchange Communication System (PECS™) was developed to target all of these potential areas of difficulty. Early PECS development began in 1985 at the Delaware Autism Program by Lori Frost, M.S., CCC-SLP, and Andy Bondy, Ph.D. Frost and Bondy had implemented a variety of traditional communication intervention strategies, but many students continued to struggle.

THIRD EDITION 2010 •

Autism Advocate 21


]

Functional Communication

photo courtesy of istockphoto.com

...teach the student that exchanging a picture and speaking is even better than using picture exchange alone. initially for use within the PECS protocol, also works well for any error within discrete trial lessons. Following mastery with pairings of preferred and non-preferred pictures, discrimination between two Speech imitation techniques required many

Phase I teaches the physical exchange of

preferred pictures is introduced. Upon

prerequisite skills, including attention to

a picture; no discrimination is required.

continued success, the picture array

the therapist and the ability to imitate fine

Rather, the focus is on teaching the

increases until the person is accurately

motor movements necessary for speech

individual to initiate a communicative

discriminating among all of the pictures in

production. Sign language was also utilized

interaction. By the end of Phase I, upon

the communication book.

with many students. However, fine motor

seeing a desired item, the individual will

difficulties often impacted the ability to sign

pick up a picture, reach the picture to the

Sentence structure is introduced at Phase

accurately, and many students developed

hand of the communicative partner and

idiosyncratic signs. Also, most people do not

then release the picture into the open

understand traditional sign language and

hand. Research supports the use of two

these unique signs were nearly impossible

trainers in this phase to minimize prompt

for the unfamiliar listener to identify. Picture

dependency by separating the source of

point systems also had drawbacks, including

reward from the source of the prompts.

difficulty in pointing accurately or with clear

IV; the simple request will now consist of the sentence starter “I want” + a picture of the desired item/activity placed on a Sentence Strip. The use of “sentence starters” such as “I want,” “I see,” “I hear,” “I have,” etc., will lead to eventual differentiation between comments and

Phase II teaches distance and persistence.

requests in Phase VI. The communicative

Communication does not only take place

partner “reads” back the sentence strip

when a communicative partner is nearby

once it has been exchanged. A pause

and waiting. As such, the communicative

between “I want” and the name of the

partner and communication book are slowly

item/activity is utilized (referred to as a

moved away from the individual until he

constant time delay) to encourage and

or she is able to travel across the room

facilitate speech/vocalizations. For any

to make a request. Additional aspects of

speech attempts or speech approximations,

generalization are introduced, including a

reward the student by providing a larger

variety of people, activities and locations.

amount of the requested reinforcer.

the Picture Exchange Communication System.

Picture discrimination skills are

In other words, teach the student that

introduced at Phase III, first through

exchanging a picture and speaking is even

PECS Protocol

pairings of preferred and non-preferred

There are six phases of the PECS

pictures. Specific error correction strategies In Phase V, the PECS user is taught to

protocol. The only prerequisite to PECS

(such as the 4-Step Error Correction

expand on basic skills with the addition of

implementation is identification of a

Procedure) are utilized for any mistakes.

attributes. Individuals often have particular

powerful reinforcer (an item or activity that

The 4-Step Error Correction Procedure,

preferences within their reinforcers. An

the individual really likes).

developed by Bondy and Frost (2002)

individual may really like the large red

discrimination and pointing whether or not a communicative partner was available. All of these traditional systems relied on the teacher/trainer to begin the interaction; none specifically focused on teaching the importance of initiating communication with another individual. Realizing these limitations, Frost and Bondy created a functional means of communication proven successful for learners with a variety of communicative challenges:

22 Autism Advocate

• THIRD EDITION 2010

better than using picture exchange alone.


Functional Communication [

therapy ball, but dislike the yellow one.

current research has involved preschoolers

Using these preferences, a variety of

and elementary to high school-aged

descriptive vocabulary can be introduced.

children, although six studies have included

The teacher/trainer introduces a response

adults. The majority of studies have focused

to the basic question, “What do you want?”

on individuals with autism, while others

in this phase. The first four phases have

have involved individuals with global

focused on teaching initiation. However,

developmental disabilities, including

responding to questions is an important skill cerebral palsy, blindness and deafness. for everyone.

Across this age range and diversity of

In Phase VI, individuals learn to make

disability issues, PECS has been highly

comments on interesting stimuli in the

successful with regard to the development

environment. Commenting lessons should

of functional communication skills.

capture the student’s interest by introducing

Regardless of age or disability, many

sounds, sights or smells in stimulating and

individuals often engage in Contextually creative ways. At the successful completion of Inappropriate Behaviors (CIBs), Phase VI, the individual will spontaneously resulting from an overall inability to comment on novel occurrences in the

communicate. Not surprisingly, when an

environment. At this time, the PECS user

individual is given a functional means of

should have mastery of a combination of

communication, many CIBs are greatly

functional communication skills, including

ameliorated. Several research articles

spontaneous requests, responsive requests,

have examined PECS implementation and

and responsive and spontaneous comments

found subsequent decreases in the rates of

(Frost & Bondy, 2002).

CIBs. For example, Charlop-Christy et al.

Review of the Literature

(2002) studied a series of behavior targets

Many researchers have examined the overall

(including tantrums, grabbing, out-of-seat

success of PECS implementation. Currently,

behavior and disruptive behaviors) for

there are over 85 PECS-related publications.

three children with ASD in both academic

Bondy and Frost (1994) reported the first

and play settings. Following PECS training,

description of PECS, as well as outcome data

they noted an overall reduction of 70

for 85 preschoolers with ASD attending a

percent across behaviors and settings, with

public school setting. Of the 66 children who

complete elimination of the four targets.

began using PECS prior to age 5 and who

Other studies have specifically examined

used PECS for at least one year, 39 students

the effect of PECS implementation on

transitioned to speech alone. Twenty-five

speech development. As mentioned

other students used a combination of speech

previously, Bondy and Frost first noted that

plus PECS.

the majority of students in their 1994 study

Although PECS was originally developed

transitioned from PECS to speech. Of the

for young children with ASD, its use has

current publications regarding PECS, at

become much more widespread. PECS

least a dozen have specifically addressed

can be an effective tool for individuals of

the issue of speech development. When

any age with communication difficulties.

speech appears or is augmented after the

As such, PECS has been successfully

introduction of PECS, it is typically after

implemented with individuals with varying

Phase IV, when the constant time delay

diagnoses across the age span. Most of the

strategy is introduced that encourages

PECS Materials Because PECS is a low-tech or light-tech communication system, there is no costly equipment to purchase to begin implementation. However, materials (such as communication books/binders) must be prepared and properly maintained. Once reinforcers have been identified for the person, symbols for those items/activities must be created. Any symbol set will do, but we have found that most communication binders contain symbols from a variety of sets. We recommend choosing a symbol set that is readily available to the team, but be flexible enough to explore other sets in Phase III if the student struggles with picture discrimination. Following are some helpful tips for gathering and maintaining PECS materials: • Start Phase I with pictures that are easily created. Picture discrimination skills are not required prior to the introduction of PECS, so use what you have. • When cutting Velcro™ to affix the pictures, it is best to either coat the scissors with cooking spray or use Titanium scissors. • Assign a communication manager to ensure that pictures are created and communication books are maintained on a regular basis. • Never make only one picture; it is often just as efficient to print and protect several of the same picture all at once. • Photocopy each page from the communication book and compare the photocopy with the communication book on a weekly basis. This allows for the continued on page 24

THIRD EDITION 2010 •

Autism Advocate 23


]

Functional Communication continued from page 23

replacement of missing pictures and the addition of new ones. • Place a white board in a strategic location so that when new interests are discovered, you can easily make a note of it and make the relevant pictures later. •  Store extra pictures or pictures that have not yet been taught by category in laminated file folders, recipe boxes, small plastic drawers or thread/bead boxes, baseball card holders in binders or small pocket charts. • Be sure the scissors and Velcro are always “at the ready” for creating extra pictures.

multi-site study randomly assigned

over 60 countries and the Second Edition

children to receive either PECS training or

PECS Training Manual© is available in 8

Pivotal Response Training (PRT), a direct

languages. Current research indicates that

speech approach with over 20 years of

PECS is clearly an effective functional

research supporting its effectiveness. After

communication system for individuals with

six months of intense training, including

communicative difficulties. In addition,

parent training and support, those children

research supports the finding that PECS

in the PECS group produced just as many

implementation results in increased speech

spoken words in as many children as those

production and social interactions for many

in the PRT group. Although, the full project

individuals, as well as noted decreases in

needs to be published in a peer-review

challenging behaviors.

format before long-term conclusions can

References

be drawn, the preliminary report appears very supportive of the broad effectiveness of PECS use. For those individuals who do not develop speech, many transition to a high-tech

and supports the use of speech along

speech-generating device (SGD). Once the

with PECS. Recently, one conference

individual has mastered sentence structure

presentation noted that the use of this

and begins using multiple attribute

strategy within Phase II also appeared

concepts, the team should consider

to encourage vocalizations, though this

transitioning the person to an SGD that

finding needs to be replicated.

has the capacity to store this extensive

Of course, not all children with autism

vocabulary. In a review of the literature

Bondy, A., & Frost, L. (1994). The Picture Exchange Communication System. Focus on Autistic Behavior, 9, 1-19. Charlop-Christy, M.H., Carpenter, M., Le, L., LeBlanc, L., & Kelley, K. (2002). Using the Picture Exchange Communication System (PECS) with children with autism: Assessment of PECS acquisition, speech, social-communicative behavior, and problem behaviors. Journal of Applied Behavior Analysis, 35, 213-231.

concerning PECS and SGDs, both strategies

Frost, L., & Bondy, A. (2002). The Picture

appeared to effectively lead to functional

Exchange Communication System training

communication.

manual, 2nd ed. Pyramid Educational

a preliminary report by Schreibman

Over the past 25 years, PECS has gained

Consultants, Inc.

(2008) gives encouraging support to the

worldwide popularity. Currently, there

Schreibman, L. (2008). One size does not

effectiveness of early introduction of PECS

are PECS/Pyramid offices in 9 different

fit all: Developing individualized treatment

to very young children (mean age of 2.5

countries with over 22,000 participants

protocols for children with autism.

years) who have 10 or fewer spoken words

annually receiving workshop training.

Association for Behavior Analysis Newsletter,

upon entry into the study. This multi-year,

PECS trainings have been conducted in

31(3):40-43.

will develop speech after the introduction of PECS. This is also true for all communication interventions. However,

About the Authors Anne Overcash, M.Ed., Catherine Horton, M.S., CCC-SLP, and Andy Bondy, Ph.D. Anne Overcash, M.Ed., has worked with individuals with ASD for nearly 20 years. She currently conducts a variety of training workshops and provides consultation to families and professionals for Pyramid Educational Consultants, Inc. For more information, visit www.pecs.com. Catherine Horton, M.S., CCC-SLP, is a speech-language pathologist who has worked in a variety of settings prior to joining Pyramid. Currently, she conducts training workshops on many topics and provides consultation services to parents and professionals. Andy Bondy, Ph.D., is the co-developer of PECS and co-founder of Pyramid Educational Consultants. He has worked with individuals with ASD and those who care for and teach them for over 40 years. 24 Autism Advocate

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THIRD EDITION 2010 •

Autism Advocate 25


feature ]

Teaching Language

A Behavioral Approach to Teaching Language D e f i c i ts i n c o m m u n i cat i o n sk i lls can b e o n e o f t h e b i g g e st c h all e n g e s , n o t o nly f o r c h i l d r e n w i t h a u t i s m , b u t f o r t h e i r pa r e nts , s i bl i n g s , ca r e g i v e r s , t e ac h e r s an d t h e r ap i sts as w e ll .

autism learn to communicate effectively,

ABA is the field dedicated to applying

we must look not only at what they are

the principles of behavior, discovered

saying, but why they are saying it. In

through scientific research, to changing

Applied Behavior Analysis (ABA), we call

behavior for the purpose of improving the

this why the function. This article will

lives of individuals. Behavior is defined

discuss the various functions of language,

as anything a person says or does, and the

kids to communicate for the right reasons

a behavioral approach to language

job of behavior analysts is to understand

and for this communication to be natural

assessment and intervention, and why

why a behavior is occurring. In order

and spontaneous. To help children with

this approach is useful.

to analyze and understand the function

By Marla D. Saltzman, M.A., BCBA, and Kathleen Kelly

It is not enough to teach children what a word means; we have to teach them how to ask for what they want, comment on the world around them, answer questions and have conversations. We want our

26 Autism Advocate

• THIRD EDITION 2010

Photo courtesy of Brian Kirst

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THIRD EDITION 2010 •

Autism Advocate 27


]

Teaching Language

of certain behavior, behavior analysts examine the behavior in relation to the environment; specifically, what is occurring immediately before a behavior occurs (the antecedent) and what consequence follows the behavior. By understanding under which circumstances a behavior is likely to occur, we can create environments that foster learning and skill acquisition (i.e., increase positive behaviors) and decrease undesirable behaviors. This is an especially empowering and encouraging point of view for parents and educators faced with the challenge of teaching children with language delays.

Common Scenarios Language is divided into two categories: what the child understands, or receptive language; and what a child says, or expressive language. Children with language delays often exhibit deficits in one or both of these areas, and educators are then faced with the responsibility to design programs to teach these skills. Therefore, it is common to see goals in a child’s Individualized Education Plan (IEP), such as, “Tyler will increase his vocabulary to include 200 words” or “Julia will speak in 2- to 3-word phrases.” These are, of course, worthwhile goals, but they do not tell us about the circumstances in which the child should be able to communicate. For example, if a child learns to say 200 new words when he or she is shown an object and asked, “What’s this?” we would say the first sample IEP goal mentioned above was met. What we would not know is whether this child would be able to say any of these new words in other types of situations. For example, a child may be able to repeat the word “spoon” after hearing someone say “spoon” or upon seeing a spoon at the dinner

ice-cream and has no spoon that he is unable

Scenarios such as these are encountered

to ask for a spoon, and instead begins to cry,

by parents and educators on a daily basis,

scream or hit. In this example, even though it

and suggest that a behavioral account of

table, and may be able to follow an instruction appears that the child “knows” what a spoon

language may useful for assessing and

to get their spoon. However, we may

is, he is not able to appropriately ask when

teaching communication to children

observe later when the child wants to eat his

he needs a spoon.

with autism and other developmental

28 Autism Advocate

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Teaching Language [

...behavior is anything a person says or does; therefore, from a behavior analytic perspective, language is behavior.

learned given new circumstances (e.g.,

something) or aversive stimulation (i.e.,

Lerman et al., 2005; Miguel, Petursdottir,

wanting something stopped or removed).

& Carr, 2005; Partington & Bailey, 1993).

The mand usually specifies what the

Therefore, to communicate effectively, it is

individual wants and is generally followed

often not enough for a child to simply learn

by someone getting what they want or

the meaning of a word; they must know

removing something they do not want.

how and when to use it.

Following is an example:

A Behavioral Approach to Teaching Communication As stated before, behavior is anything a person says or does; therefore, from a behavior analytic perspective, language is

Photo courtesy of Brian Kirst

behavior. In 1957, Harvard psychologist B.F.

A child wants candy, so she asks for candy by saying, “candy” (or signing, “candy” or handing an adult a picture of candy), and she gets candy. In this example, the mand is, “candy.” Not having any candy (deprivation) and wanting candy evokes the response, “candy,” and results in getting candy.

Skinner wrote a book titled Verbal Behavior,

Typically developing children mand

in which he categorized what is commonly

numerous times each day; however,

referred to as expressive language

children with language delays may not

according to its function or purpose. That

make these types of responses without

is, Skinner was interested in why people say

specific training. Failure to mand

things. This analysis of language has since

often leads to children getting items

proven to be very useful in helping behavior

or attention through engaging in other

analysts and other educators develop

types of behavior (usually unwanted or

procedures to teach language to children

challenging behaviors, such as crying,

with autism.

tantrums or aggression) in order to get

Skinner identified four functionally

their needs and wants met. As such,

independent categories of verbal responses,

mand assessment and training is widely

also known as verbal operants: 1) The

considered a good starting point when

Mand, 2) The Tact, 3) The Echoic and 4)

teaching communication skills (Koegel

The Intraverbal. In each case, the form

& Koegel, 1995; Sundberg & Michael,

is the same (e.g., “spoon”); however, the

2001). Many successful interventions

function or the circumstance under which

have focused on first teaching mands as

disabilities. In addition, the result of

the word is emitted is very different.

appropriate communicative alternatives to

over 25 years of scientific research with

The Mand. In simplest terms, a mand is

both children with autism and typically

a request for an item, action, activity,

developing children tells us that oftentimes,

information or the cessation of something.

The Tact. In simplest terms, a tact is

children, especially early language learners,

The mand is always preceded by states of

naming or describing something that

will not automatically say words they have

deprivation (i.e., wanting to gain access to

comes in contact with one of the five

inappropriate behaviors (e.g., asking for a spoon instead of crying or hitting).

THIRD EDITION 2010 •

Autism Advocate 29


]

Teaching Language

senses—what someone sees, hears, feels, smells or tastes. At first glance, the tact may easily be confused with a mand. However, it is important to understand that the verbal response, although it may be in the same form as a mand, is not occurring because the person wants to gain access to something. Instead, the person is simply stating or describing what they are encountering in their immediate environment, resulting in some form of acknowledgement or attention from others around them. Following is an example:

illustration courtesy of istockphoto.com

A child who has candy sees a boy at the park who is also eating candy. She says, “Candy,” “Look, candy” or “That boy is eating candy too.” Mom says, “That’s right! That boy is eating candy.” In this example, the child says, “candy” not because the child has no candy and wants candy. Rather, she says, “candy” because she sees someone else eating candy. The consequence that follows: Mom’s attention and acknowledgement that she is correct!

It is important for children with autism and language delays to learn to spontaneously tact (i.e., comment) on their environment. Without this important skill, a child is unable to engage in the kind of social exchange illustrated in this example. Tacts allow us to verbally share our experiences with others and are an important component of conversational language. The Echoic. In simplest terms, an echoic is

Echoic behavior is a foundational skill necessary for meaningful vocal verbal behavior to develop.

simply repeating exactly what he or she

that is not the same as the stimulus.

hears (i.e., echoing). For example, hearing

For example, hearing someone else say,

What to Teach: Behavioral Language Assessment

someone say “candy” and then saying,

“Ready, set….,” and then saying, “Go!” Or

So, why is a behavioral classification of

“candy.” Having echoic behavior is essential

when asked, “How are you?” responding,

language useful and how does it relate to

for learning to say words, vocabulary and

“Great!” Much of elementary and secondary teaching our children? By understanding

foreign languages. Echoic behavior is a

education focuses on teaching intraverbal

how and why verbal responses occur, we

foundational skill necessary for meaningful

behavior. For example, students are

are able to thoroughly assess a child’s

vocal verbal behavior to develop.

expected to learn to answer numerous

language skills across the verbal operants

The Intraverbal. Intraverbal behavior is

questions across subjects, such as, “What’s

(i.e., the mand, tact, echoic, intraverbal)

defined as a verbal response to a verbal

9 x 5?” “Define ‘volcano’” and “Who was

rather than simply assessing a child’s

stimulus (i.e., what someone else says)

the first president of the United States?”

expressive and receptive language. In

30 Autism Advocate

• THIRD EDITION 2010


A web project of Kennedy Krieger Institute • Sponsored by Autism Speaks

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All children under the age of 18 in the United States who have been diagnosed with an ASD by a professional are eligible to participate. The child must be enrolled in IAN Research by a biological or an adoptive parent who is legally authorized to provide consent. Once a research profile is created, other eligible family members may participate, including other biological/adoptive parents and any full or half-siblings (under the age of 18). All adults in the United States who have been diagnosed with an ASD by a professional are eligible to participate. Adults with an ASD who are able to provide consent for themselves may create their own research profile and then add additional eligible family members, including any biological/adoptive children (under the age of 18) and any other parents of these children. Adults with an ASD who are not able to provide consent must be enrolled in IAN Research by a legally authorized representative (such as a guardian). Once a research profile is created, other eligible family members may participate, including biological and/or adoptive parents of the individual with an ASD. ASD diagnoses that are included in IAN Research are: Autism or Autistic Disorder, Asperger Syndrome, Childhood Disintegrative Disorder (CDD), Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS), Pervasive Developmental Disorder (PDD), Autism Spectrum Disorder (ASD). Principal Investigator: Paul Law, MD MPH Contact: ResearchTeam@IANproject.org JHM IRB#: NA_00002750

Approved April 28, 2009

THIRD EDITION 2010 •

Autism Advocate 31


]

Teaching Language

photo courtesy of istockphoto.com

A behavioral language assessment provides information, not only about deficits in language form... but also language function... developmentally appropriate, sequential

to know the location of her juice (e.g., by

manner.

offering the child a snack or asking her

How to Teach: The Behavioral Approach It is not only important to identify what to teach, but also how to teach it. A behavioral approach to teaching language offers both. It does not merely tell us what the child can or cannot do given addition, we are able to design language

certain circumstances, but it provides the

intervention programs that directly focus

information educators need to establish

on teaching the skills missing from the

certain behaviors missing from a child’s

child’s verbal repertoire.

repertoire.

A behavioral language assessment provides

For example, when teaching mands, we

information, not only about deficits in

often make simple changes to a child’s

language form (e.g., nouns, prepositions,

environment to provide opportunities for

plurals), but also language function (e.g.,

the child to mand. If we have determined

mands, tacts, intraverbals). The assessment

through assessment that a child cannot

process combined with what research

ask for objects or activities that he or

has taught us about the development of

she wants or needs, and likes ice-cream,

language in typically developing children

for example, we may present ice-cream

provides us with a guide for creating

without a spoon and provide a prompt

language intervention programs that target

for the child to say, “spoon.” When he

skills that are developmentally appropriate

does, we then provide a spoon. Similarly,

for the child. Such an assessment allows

if assessment has revealed that a child

us to focus on basic/fundamental skills

cannot ask for information (e.g., “Where’s

first (e.g., requesting/manding) and then

my juice?”), we may place juice out of the

gradually teaching more complex skills

child’s view and then contrive a situation

(e.g., conversational skills/intraverbals) by

to make it likely that the child will want

to, “Get your juice”). If needed, after the child has looked for the juice, we can provide a prompt for the child to say, “Where’s the juice?” When she does, we can then divulge its location so that the child can find it. Over time, these prompts are then faded so that our kids learn to spontaneously ask for what they want and need. A common concern of parents and educators is that their child/student “knows” a lot of words; however, they never spontaneously use language. By analyzing language from a behavioral perspective, we take into consideration the circumstances under which responses usually occur, identify targets that are functional and meaningful to the child in their everyday life, and create situations in which the child can learn to spontaneously emit these responses. A behavioral approach to teaching language provides us with an effective and efficient way to teach, thus significantly improving the lives of children with autism and their families. References available from authors upon request.

building upon the foundational skills in a

About the Authors Marla D. Saltzman, M.A., BCBA, and Kathleen Kelly Marla D. Saltzman, M.A., BCBA, is the Co-founder and Clinical Director of Autism Behavior Intervention (ABI) in north Los Angeles, and is adjunct faculty at the Chicago School of Professional Psychology, Los Angeles. Kathleen Kelly is a Program Supervisor and Research and Development Supervisor at ABI. She is currently completing her master’s degree in counseling with an ABA emphasis at the California State University, Los Angeles. 32 Autism Advocate

• THIRD EDITION 2010


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Autism Advocate 33


feature ]

Social Skills

Enhancing Social Communication Skills Social Skills Training via Simulated Environments The life of many parents with children on the autism spectrum is reple te with the trials and

By John Guercio, Ph.D., BCBA-D, CBIST

preferred items, such as a grocery store,

What is perceived as a simple task to

the ability to refrain from reaching out

most of us can be an arduous undertaking

for these items can be quite difficult. On

for those families dealing with autism

top of this is the sensory overload that

spectrum disorders (ASD), especially when

can occur as a result of bright fluorescent

it comes to social communication skills.

lights, the swishing sound of automatic

The child with ASD rarely has the impulse

doors opening and closing, and the squeak

control to be able to maintain appropriate

of grocery carts as they are pushed around

behavior in social situations.

the store. This does not even take into

The reason for this lack of the control

account the task of navigating the parking

is quite simple. When one is in an

lot to enter the store in the first place! In

environment that contains a variety of

such a situation, we would be asking a bit

34 Autism Advocate

• THIRD EDITION 2010

illustration courtesy of istockphoto.com

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THIRD EDITION 2010 •

Autism Advocate 35


Social Skills

illustration courtesy of Bonnie Roskes

]

A virtual visit to a dentist’s office helps ease fears.

Parents should not have to worry about how people in the community might react if they see an angry outburst or an emotional struggle.

One of the preferred means of accessing the world around them is the television or computer. It is a highly valued activity for many individuals with ASD. The images and steady flow of auditory stimulation that come from these sources can be

much of an individual with an ASD to then

the point is made with great clarity. The

controlled at will and experiences can be

display excellent behavioral control and

thought that I am trying to communicate

selected to coincide with the child’s special

lack of impulsivity when they are being

is that social problems and communication

interests. In a way, it is tantamount to

bombarded simultaneously by all of the

are core deficits inherent in autism. Parents

being able to turn your world of experience

stimuli mentioned above.

should not have to worry about how people

on and off at whim. The documented

The truth of the matter is we expect that all

in the community might react if they see

children should behave in a similar fashion

an angry outburst or an emotional struggle.

when out in the community. Parents of

They should be able to devote all of their

children on the spectrum often have to

emotional resources towards helping their

endure cruel stares and hushed comments

child in the moment. It is well known

from others when their children engage in

that once children are back in their home

unwanted behavior in community settings.

environment, they are more comfortable

Most of these parents just “grin and bear

and less likely to engage in behavior that

demonstrate the repetitive nature with

it,” but some have adopted unique styles to

can be problematic in the community.

which they select video and audio clips, and

deal with these frustrating events. I knew

strengths in memory and ability to use visual information more effectively than information obtained via other senses serves as a strong evidence base from which to incorporate a visual strategy into social skills training for individuals with autism (Janzen, 2003). Even brief observations of children with ASD

their intense focus as they take in scenes

a father who once made a special t-shirt

Accessing the World Virtually

that read “stop staring” on the front of his

Interactions and aspects of their

if the computer screen or television

shirt. The back of the shirt read, “My son

environment that promote learning

were replaced by a live human being, the

has autism; you can help by not staring

new skills and the interpretation of the

constant contact, repetitive interest and

and offering to donate to your local autism

world through their own unique vision

on-task behavior would likely disappear

charity.” It may not be the most politically

can contribute to children’s comfort and

quickly. Because of the effectiveness of this

correct way to share this message, but

tranquility.

medium in engaging individuals on the

36 Autism Advocate

• THIRD EDITION 2010

on their television or computer. However,


Social Skills [

The ability to know with some level of certainty what the future holds can be very important to many people, especially to those on the spectrum. Likens (2008) describes how the allure of video games centers on their patterns and predictability. There is a given set of rules that accompanies all games. The process of playing these games involves a series of steps that eventually lead to either positive or negative outcomes. Behavior analysts would call these games the perfect behavior modification tool. The shaping protocol that is used is very effective; responses that are effective are reinforced and maintained, while those that result in loss of life, points, illustration courtesy of istockphoto

vehicular crashes or other disincentives are selected out. The end result is that the individual is “trained to criteria” on that particular game. In essence, the positive feedback obtained from doing the right things in the game are rewarded and occur more frequently. At the same time,

Likens (2008) describes how the allure of video games centers on their patterns and predictability.

responses that produce loss of points or other negative outcomes are decreased. Likens looks at these games in a different light—one that is colored by his experience

spectrum, a new approach to addressing

describe their uncanny ability to engage in

of being on the spectrum (he is a 26-year-

social anxiety capitalizes on computer-

video games and computer interaction for

old male with Asperger’s syndrome). His

based media.

hours.

revelations about video game play and its

The Allure of Video Games A recent article on the use of a computer software program to address social skills issues in the ASD population underscores

In his book Finding Kansas (2008), Aaron Likens describes his relentless desire to “defeat” a video game when he encounters

role in the lives of many individuals on the spectrum help us to understand this attraction.

it. He is currently ranked number one in

As mentioned above, video games have a set

the world in several racing games. To the

of rules that the player must follow. These

a new wave of training opportunities

casual observer, this fascination with games

rules are immutable and specific. Therein

(Guercio, 2009). By using the computer

seems reasonable to a degree, but to the

lies the attraction for individuals on the

screen and functionally related tasks to

clinician, parent or researcher, a number

spectrum. With a rigid set of rules, there

garner the attention of individuals on the

of questions come to mind. Why are these

can be no abstract thought, no uncertainty;

spectrum, researchers are starting to unfold

games so enthralling? Why do they absorb

everything is laid out in a predictable

the possibilities that may lie deeper within

the complete attention of those who play

pattern that one can easily discern and

the technical world to provide functional

them, especially those with ASD? Likens

navigate. Employing visual information to

treatment for individuals on the autism

gives us some clues that can help us better

teach a point is one of the most effective

spectrum. Those on the spectrum often

understand the video-autism connection.

ways to instruct individuals with autism

THIRD EDITION 2010 •

Autism Advocate 37


]

Social Skills

illustrations courtesy of Bonnie Roskes

Brothers share a bonding moment.

(Schneider & Goldstein, 2010). There

training, have been in place for a number of

is a clear start and finish to computer-

years. These approaches are labeled visual

based activities. The ability to anticipate

support systems (Charlop & Milstein,

when virtual communication of visual

1989). Though the name may sound

information is completed is much simpler

elaborate, the strategies are not. Various

than trying to do this in a conversation.

social skills protocols employ visual supports in the form of video modeling to

Learning Social Skills via the Computer

perform the social skills being targeted.

Social situations can be quite problematic

valued, making the task less challenging

for individuals on the autism spectrum.

and increasing performance and skill

Each social interaction that a person with

acquisition as a result. The models can

ASD experiences is like a math problem

be based on specific social situations

without a solution. There is no such thing

that individuals with autism experience

as a written or implied set of rules that

on a daily basis. Each model allows the

applies to every situation. This leaves life

person to “walk” through a scenario on

very unpredictable. For individuals who

the computer screen and describe what

value sameness, surprises are aversive.

they would do or say given the situation

moving to a new classroom, attending

Practicing social skills in a one-on-one

depicted on the screen. Training then

a new summer camp, getting a haircut,

manner (which is typical of many social

takes place by providing feedback on the

visiting a store, etc. By creating and

skills treatment approaches) can be a

computer screen through virtual models of

“walking through” a model of the situation

punishing experience for individuals

people with whom the individual typically

ahead of time, an individual with ASD can

on the spectrum. An alternative to this

interacts as depicted above.

“rehearse” the event; therefore, becoming

method is integrating the love of visual

The medium used to teach is one that is

spectrum can design virtual environments to show people with ASD what to expect before they encounter the real situation. The example above focuses on a visit to the dentist, but similar stress can occur when

more familiar with, and better prepared

This is where building computerized

Anxiety Management: Using Google SketchUp for Pre-Instruction

virtual models of specific social

Some children and adults with an ASD

environments can be a valuable treatment

get very anxious in unfamiliar, stressful

tool in social skills instruction. Similar

situations. Using 3-D software, created

approaches to instruction in the field

by Google, called SketchUp, parents,

This approach makes a great deal of

of autism, such as video modeling and

educators and even individuals on the

practical sense since the different social

media into the training process.

38 Autism Advocate

• THIRD EDITION 2010

for, what he or she will encounter. Once the individual has mastered the skill on the computer screen, they are then ready to proceed to practicing the skill in the real world.


Social Skills [

situations that individuals with autism encounter can be depicted. Hagiwara and Myles (1999) have incorporated Social

The Glenholme School

A Devereux Center

Stories™, visual symbols and computer-based instruction in a multimedia training package. The main difference with this program is that the practice of the appropriate skill is done with the help of computer models that serve as a reinforcing (rewarding) teaching tool as opposed to learning these skills in circumscribed scenarios. The skills being taught may be the same, but the medium by which the teaching takes place makes the acquisition easier due to diminished levels of anxiety. In this age of video games, three- dimensional televisions and movies, and other digital media, it makes good sense to incorporate the wave of the future to address the social communication challenges of today in the autism spectrum population.

References Charlop, M.H., & Milstein, J.P. (1989). Teaching autistic children conversational speech using video modeling. Journal of Applied Behavior Analysis, 22(3): 275-285. Guercio, J.M. (2009). Digital social skills training: Bringing social skills training into the digital age. Autism Link, 33,125-128. Hagiwara, T., & Myles, B.S. (1999). A multimedia Social Story intervention: Teaching skills to children with autism. Focus on Autism and Other Developmental Disabilities, 14, 82-95. Janzen, J.E. (2003). Understanding autism: A guide to the autism spectrum disorders. San Antonio, Texas: PsychCorp. Likens, A. (2008). Finding Kansas: Decoding the enigma of Asperger’s Syndrome. Mustang, Okla.: Tate Publishing Company. Schneider, N., & Goldstein, H. (2010). Using Social Stories and visual schedules to improve socially appropriate behaviors in children with autism. Journal of Positive Behavior Interventions, 12(3): 149-160.

About the Author

John Guercio, Ph.D., BCBA-D, CBIST

John Guercio, Ph.D., BCBA-D, CBIST, is Vice President of Clinical Services and Research at TouchPoint Autism Services (formerly the Judevine Center for Autism), which serves more than 2,500 families annually. He previously worked as the Program Director for the Personal Intervention Program at the Center for Comprehensive Services. He received his degrees from the Behavior Analysis and Therapy Program at Southern Illinois University in Carbondale.

An exceptional boarding school for students with special needs; The Glenholme School offers an individually prescribed learning environment with a steadfast academic curriculum. Using our effective individualized services, we apply a positive behavior support model focused on development of social skills and lifelong strategies for success. The school’s milieu therapy addresses varying levels of academic, social and special needs development in students, ages 10-18 and postgraduates. We prepare graduates for continued education in traditional day schools, boarding schools, colleges and universities. Specializing in: • Asperger’s, ADD, ADHD; and emotional, behavioral and learning disabilities • Career Exploration • Self-discipline Strategies • Social Coaching • Multimedia Curriculum • Motivational Management • Positive Behavior Supports • Character Development • Relationship Mentoring

Open Enrollment for Glenholme’s Middle School and High School; and the Post-Secondary and Summer Camp Programs 81 Sabbaday Lane Washington, CT p: 860.868.7377 • f: 860.868.7413 admissions@theglenholmeschool.org

ww w .t h eg le nh o l mes c h o o l .o r g THIRD EDITION 2010 •

Autism Advocate 39


feature ]

Speech Therapy

Get Out of the Office photo For illustrative purposes only. photo courtesy of photodisc.

Speech Therapy in Natural Environments

By Erin Weiner, M.S., CCC-SLP

While this common method is effective in some cases, the problem is that many people on the spectrum face their most difficult challenges during social interactions in their everyday lives. For this reason, many people who are diagnosed with autism spectrum disorders are better served when speech-language pathologists work with them in their natural environments. Instead of asking clients to come into an office, this new approach calls

T r a d i t i o nally, sp e e c h - lan g u a g e pat h o l o g i sts

for visiting clients in their homes, schools

h av e w o r k e d w i t h p e o pl e o n t h e sp e ct r u m i n

and work places. By doing so, the therapist

o ff i c e s e tt i n g s . F o r t h e cl i e nt, o ff i c e - bas e d

is able to help clients deal with real-world

t h e r ap y i s l i k e a d o ct o r ’ s v i s i t.

situations as they occur. To be sure, there are certain instances in which the traditional approach may still be best. The office setting can act like a pair of training wheels, allowing clients to practice skills that they can transfer to a natural environment. And older clients may

40 Autism Advocate

• THIRD EDITION 2010


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Autism Advocate 41


feature ]

Speech Therapy

be uncomfortable with a therapist visiting

locating items, but what if they cannot

them in their workplaces and thus prefer

find something? The therapist can use this

the privacy of an office. While the natural

situation as an opportunity to have the

environment approach is a relatively new

client try to locate a store employee for help.

method, and therefore not well researched,

During the interaction, the therapist can

my experience in the field has convinced me

assist the client with formulating a question

that it is the preferable way to work with most

and asking it at the proper volume level.

people on the spectrum, regardless of age.

The store is also a great opportunity to work

Benefits of the Natural Environment Approach One defining characteristic of people on

on greeting others. For instance, when it is time to pay, the client can be reminded to say “thank you” to the cashier.

the autism spectrum of all age groups is

Beyond the general reasons why natural

that they have a difficult time with social

environment treatment is preferable,

interactions. Social skills cannot be taught

there are reasons why it works for specific

like math. Asking clients to memorize

populations.

scripts can be useful as a stepping stone, but

photo For illustrative purposes only. photo courtesy of photodisc.

By conducting therapy in a more natural setting, it can actually be fun, and it is easier to involve family, friends and neighbors...

it is easier to involve family, friends and neighbors–a crucial aspect of childhood development. During the sessions, the therapist can create situations to help the kids practice the skills they have just learned.

Natural Environments and Children

The therapist can organize activities, such

sure a skill is generalized is to teach it in a

Children visiting a speech pathologist’s

or jumping on a trampoline, and invite other

variety of settings, and then practice it over

office are often forced to sit at a table during

kids over. This helps establish the client as

and over again. It is one thing to talk about a

the session; however, it is very difficult for

living in a “fun house” where other children

past incident, but it is far better to be there

a child with sensory processing disorder

enjoy hanging out. It is a wonderful

to intervene when something happens. At

to sit for long periods of time. Working

opportunity for kids on the spectrum to

the same time, when speech therapists are

with such clients in their home or at a local

learn how to interact with others.

in the natural environment, it also allows

playground is much less confining and helps

Regular office visits can be especially taxing

them to coordinate with the entire team

put them at ease.

for the parents of children on the spectrum.

of specialists who work with those on the

School gets more difficult as students get

Because speech therapy is just one aspect of

spectrum, and involve the family, peers and

older, and the amount of homework kids are

coaching people on the spectrum, parents

community in the learning process.

assigned these days can be overwhelming.

are pulled in many directions. Driving their

Once liberated from an office, there is no

Kids who need speech therapy often require

kids to all of these appointments can mean

limit to where therapy sessions can be

other services, such as occupational therapy.

hours on the road each week to see the best

conducted. Even a setting as ordinary as

Between all of these appointments and

professionals in the field. Families often

a grocery store can prove to be a useful

schoolwork, they do not have much time to

find themselves spending more time in their

environment for working with those on the

be kids. By conducting therapy in a more

cars than they do in their own homes and

spectrum. Some clients have no difficulty

natural setting, it can actually be fun, and

backyards playing or cooking.

it will not teach skills that are applicable in the real world. The only true way to make

42 Autism Advocate

• THIRD EDITION 2010

as watching DVDs, playing on a Slip ‘n Slide


Speech Therapy [

Easing the Burden on Parents

began asking questions without the cards,

about potential social situations they might

Parents of children on the spectrum are also

and the questions evolved into fully formed

encounter, based on scripts. It is also a good

under a tremendous amount of emotional

sentences such as, “Where are we going?”

way to prevent teens on the spectrum from

and financial stress, and as a result, they

and “What are we doing?” As a result, his

staying glued to their computers looking for

can feel socially isolated. Often, the only

anxiety and meltdowns subsided, and he was friends on social networking sites, which is a

people they meet are other mothers in the

able to smoothly transition among the day’s

waiting room at the therapy center rather

activities without a fuss.

than neighbors at the local park or a kid’s soccer game. The demands of taking care of kids who need services on a regular basis overrides everything else in the parents’ life. The natural environment approach in which the speech therapists come to them is one way to help ease the burden. I worked with one parent who was concerned that her five-year-old son was crying and experiencing meltdowns while being driven places. He was also having difficulty transitioning between activities and was expressing anxiety over unexpected changes to his schedule. Over the course of treating her son, I observed that while

How Teens Can Benefit from Group Social Outings

common complaint among parents.

How Adults Can Benefit from the Natural Environment As those on the spectrum move into

Currently, there is a lack of speech services

adulthood, some may continue to encounter

for teens on the spectrum even though

difficulty with social interactions requiring

they need the same practice with social

more intensive intervention. In these cases,

interactions as younger kids and adults.

adults would still benefit from supervised

Most speech pathologists work with kids

group events. Outings such as visits to the

from birth until 10 years old and sometimes

movies, Renaissance fairs and rock climbing

until they turn 12. A lot of teens do not want

trips can all facilitate social development

the stigma of going to an office and are tired

based on common interests.

of going to the same place year after year.

For those on the spectrum who are gainfully

Yet, teens still need to be receiving therapy.

employed and successfully married with

Therefore, the natural environment method

kids, yet still need simple refinements to their

is especially helpful in these cases.

social skills, they may be more comfortable with the traditional office-based approach.

he was able to make comments, he had not

What teens really want is to get out and

yet developed the ability to ask questions.

engage in activities that interest them. Some

Speech-language pathologists still have a

To address the problem, I gave her a series

teens may have a difficult time making

long way to go in identifying the goals and

of cards to play a game with the child. On

friends and have different interests from

social skill sets they need to teach adults on

the front of a card, it said, “I’m going to do

most of their peers. That is why group

the spectrum who can experience significant

something,” and that triggered the child to

outings with a speech therapist are a great

difficulty with marriage, dating and even

read the back of the card, and ask, “What?”

way to place teens with people who have

making friends.

Another card had the words, “I’m going

a common interest while allowing the

Over time, we have developed a more

to go somewhere” on front, and “Where?”

therapist to observe where any breakdowns

nuanced understanding of the challenges

on back. At first, I trained her to practice

in communication occur. A bowling alley,

those on the spectrum face, both with

these exchanges at home, while engaging in

for instance, is a good place for a lesson on

pragmatics and social interactions. It is only

motivating activities with her child. Once he

sportsmanship, teamwork and respecting

fitting that our method of working with this

had mastered the skill at home, I instructed

others. This type of social group therapy is

population adapts to that new understanding,

the mother to bring those cards with her in

much more beneficial than the old-fashioned which is why speech-language pathologists

the car and to the different places they went.

way of taking a group of kids on the

should embrace the natural environment

Sure enough, after a few weeks, the child

spectrum and placing them in a room to talk

approach.

About the Author Erin Weiner, M.S., CCC-SLP Erin Weiner, M.S., CCC-SLP, is a speech-language pathologist serving the Washington, D.C., metro area. She is certified by the American Speech- LanguageHearing Association (ASHA) and licensed by the states of Maryland, Virginia and Florida. She can be reached at erin@erinsplacefortherapy.com.

THIRD EDITION 2010 •

Autism Advocate 43


feature Conversation Basics

illustration courtesy of stockbyte

]

Conversation Basics Simplifying How We Teach Conversation

C o n v e r sat i o ns tak e plac e w h e n tw o o r m o r e p e o pl e c o m m u n i cat e w i t h e ac h o t h e r .

By Kerry Mehaffey Mataya, M.Ed.

Communication is an

conversations might come naturally for

essential life skill that

many, they are generally a challenge for

allows an individual to make friends, maintain friendships,

When I first started teaching conversation skills to people with AS, I worked with both

employment. Effective conversations

individuals and groups in both school and

and ideas heard, as well as making • THIRD EDITION 2010

individuals with Asperger Syndrome (AS).

succeed in an interview and maintain

enable people to get their needs met

44 Autism Advocate

others around them comfortable. Although

after-school settings. Individual settings were more difficult because to practice


This is what success looks like…

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To learn more about The Daniel Jordan Fiddle Foundation visit: www.djfiddlefoundation.org To contact us, email: info@djfiddlefoundation.org Become a FAN of The Daniel Jordan Fiddle Foundation on:

THIRD EDITION 2010 •

Autism Advocate 45


]

Conversation Basics

conversation there really needs to be an

but it was difficult to pinpoint exactly

they can be used in 1:1, small group or large

extra communication partner. We were

how I engaged in effective interactions.

group instruction.

able to role play, but were not often able

Conversation came naturally to me, so it

The three content areas encompass the

to re-create the anxiety of relating to an

was hard to explain it to others. I wanted to

following:

unfamiliar face or a peer.

come up with a simple protocol to simplify

In social skills groups, I started teaching

teaching conversation to my students.

students using lesson plans from books

For many weeks, I spent a lot of time

sentence often beginning with who,

geared toward those with AS. In our

observing others at restaurants and

what, when, where, why and how.

groups, we typically had between four and

watching television to figure out what

Questions can also begin with a

six students with AS per session. To be

people were doing during conversations.

statement such as, “Tell me about

honest, during most sessions, I heard at

Instead of listening to the conversation

your…” Most questions elicit a response

least one student say, “This is boring” or

itself, I would ask myself, “What are they

from the other person to gain some type

“I already know this.” At that time, I felt

doing?” One night, it hit me. All people

of information. A rhetorical question is

like I was prompting every interaction. I

really do in conversation is three things: ask

the only type of question that does not

also felt like there were too many rules for

questions, tell stories and make comments.

need a reply. Follow-up questions are

students to remember and did not see the

I named my new protocol Conversation

used to ask about what a person has just

progress that I wanted to see. Unless the

Basics.

said. Follow-up questions can be very

1  Asking Questions. Questions are typically asked using an interrogative

group went over the previous lesson, that

effective at maintaining a conversation

lesson became a distant memory the next

and showing interest. However, if you

week and was not necessarily generalized

ask too many questions, you can be seen

to real life.

Conversation Basics

I knew that most individuals with AS

1 Asking Questions

were not efficient at multi-tasking and had

2 Telling Stories

sequence of events (past, present, future

3 Making Comments

or hypothetical). Stories will vary in

high levels of anxiety in social situations. It was crazy for me to ask my students to

as interrogating the other person.

2  Telling Stories. Stories outline a

length depending on the details of the

remember lots of rules while in a high-

event. Some stories relay many events,

stress situation (having a conversation with

whereas others detail one event. Related

someone they hardly knew).

stories are a specific kind of story that

to younger children or older adults. If you

The Components of Conversation Basics

think about it, most children do not put a

Conversation Basics is an instructional

maintain a conversation because they

lot of emphasis on talking because they are

tool that provides a concrete structure for

take up the bulk of the conversation

too busy playing. Many adults can keep a

understanding the content of conversation.

time. However, stories that go on for

conversation going by asking questions or

The balance of the three components is

too long can be seen as monologuing

telling related stories during silences to

what makes a conversation work. Listening

and a conversation killer. Students

keep tension from building. At the time,

is also a key component to conversing with

sometimes make up stories and might

my clients did not know what to do when

others; however, it is an integral part of all

need additional help to detail events

talking to a peer.

three of the content areas. How can you

that are true.

Many individuals with AS enjoy talking

Different styles work for different therapists, teachers and parents. I knew I

know what to ask or how to comment if you are not listening?

relates to the topic of the conversation. Stories can be an effective way to

3 M aking Comments. A comment is a remark made up of a single word or

needed to do something that worked for

For initial instruction, Conversation Basics

phrase. Comments are usually used

me and my students. I felt pretty confident

is effective in both 1:1 or small group

for the purpose of contributing a

in my ability to converse with others,

settings. Once the concepts are learned,

quick thought or observation, showing

46 Autism Advocate

• THIRD EDITION 2010


THIRD EDITION 2010 •

Autism Advocate 47


]

Conversation Basics

Therefore, secondary conversation skills

Conversation Errors

1

2

(i.e., eye contact, body position) have to be



3

addressed once the content of what to say is established and perfected.

Asking Questions

Telling Stories

Making Comments

• Ask questions already know the answer to

• Tell the never-ending story

• Use comments that are out of style

anxiety. When you were in school, were

• Ask same question over and over

• Provide only 1-2 sentences, and wait to be prompted to tell more

• Use same comment over and over (i.e., “Cool…cool…cool”)

to call on you in class? If so, what did you

• Use comments lacking the right personality, tone or facial expression

the teacher was less likely to call on you. It

Poor eye contact is sometimes due to

• Ask an irrelevant or off-topic question (usually based on self-interests) • Ask questions about own interest • Ask questions to find out information (for own purposes, rather than to learn about other person)

• Tell a story in a list format using simple sentences (the format is often uninteresting to the listener)

you ever anxious that the teacher was going do? You probably looked down. Without making eye contact, you probably felt that is the same with conversation. If you do not make eye contact with the other person, perhaps they will not talk to you or expect you to say anything.

Steps Involved in Conversation Basics Following are the steps that teachers/ parents/caregivers should follow when

Figure 1

utilizing the Conversation Basics tool:

interest or making a connection with

taught themselves. If somebody tells

what is being said. If done at the right

stories without asking questions, they can

time, a comment can be an important

be labeled a monologuer. If somebody

contribution to a conversation. If done

asks a lot of questions, they can be labeled

at the wrong time, a comment can be

an interrogator. The balance between

seen as interrupting. Students should be

the three areas is critical. If any one

careful to use more than just comments

area is emphasized to the extreme, the

in a conversation. If you use only

conversation will be negatively affected.

comments, the other person may think you are not listening or do not care about the conversation.

Getting Started When I first start working with an individual with AS, I expect to see at least one or two conversation errors from Figure

The objective is for you to integrate Conversation Basics into your classrooms, homes and social skills groups to help individuals with AS to learn to converse with others effectively. It is never too late or too early to start using this technique.

1.  Observe your child or student in multiple and varying conversations with peers over a minimum of three days. 2.  After your observation period, use the rating sheet tool (see Figure 2 on next page) to determine any observable weaknesses associated with the Conversation Basics areas (asking questions, telling stories, making comments). 3.  Determine one area that will be your initial focus. If your child or student is weak in two or three conversation areas, choose one to initially focus on. 4.  Meet with your child or student to

Secondary Conversation Development

pre-teach the vocabulary of Conversation

1 above. This is not a comprehensive list of all errors, but it can be helpful as you are

When talking to peers, individuals with

that this is all they do in conversation with

starting to teach conversation using this

AS often fear saying the wrong thing in

the exception of listening. This breaks

method.

conversation. That is why it is important to

conversation down into something they

Individuals with AS are usually good at

teach the content of conversation first—what

can see as manageable.

either asking questions or telling stories.

is actually being said. However, it is not just

5.  Ask your child or student how they feel

They are usually not adept at both, unless

what you say, but how you say it that allows

about their skills in the Conversation

they have received special training or

someone to respond positively or negatively.

Basics areas. Which ones do they feel they

48 Autism Advocate

• THIRD EDITION 2010

Basics. Make it simple, and let them know


Conversation Basics [

do well? Which ones do they feel they

sation Basics with a small group of peers

a conversation with peers on a topic

do not do well? What do they want to

with common interests. Use visuals (i.e.,

without any prompts. This would signify

improve? Keep in mind that they may not

note cards, Conversation Basics visual

they are conversing independently.

be aware of what they do or do not do in

or pre-determined, non-verbal cues or

11.  Once Conversation Basics are mastered,

conversation.

gestures) if necessary. The Conversation

develop new goals for secondary conver-

Basics do not need to be mastered to be

sation skills as needed.

6.  Integrate Conversation Basics into a one-minute conversation in a 1:1 setting. You will be doing a lot of verbal prompting depending on the goals you have developed. Your verbal prompts should be short and always reference the Conversation Basics visual. Repeat this step as necessary until

able to practice them in a group setting; however, your child or student should be responsive to at least one prompt (i.e., what someone says triggers them to ask a follow-up question on the topic). 9.  Continue to extend the conversation and

Following is a rating sheet tool for you to use in scoring your child or student on how they use the three components of Conversation Basics. In closing, it is my hope that I have

decrease the number of prompts you are

adequately described how to simplify

using in a group setting. You may have to

teaching conversation to people with AS.

teach a student how to track a conversa-

Individuals with AS can learn social skills by

conversation and decrease the number of

tion in a large group to be able to follow

simplification, repetition and generalization.

prompts you are using in a 1:1 setting.

the content of the conversation.

Following this three-step process can lead

the vocabulary has been learned. 7.  Continue to advance the length of the

8.  As soon as progress is made in a 1:1 setting, provide opportunities to practice Conver-

10.  The end goal is for your child or student

to success for both teacher and student.

to initiate a variety of contributions to

The Conversation Basics Rating Sheet Average

Below Average

Poor

1 Asking Questions Ask questions about the other person (i.e., “What are you doing this weekend?”) Ask general questions to start a conversation (i.e., “What grade are you in?”) Ask follow-up questions on topic (i.e., “So, you went to the beach…what did you do there?”)

2 Telling Stories Tell a story in sequential steps (i.e., first…then…then...) Tell a story around one event (i.e., “One time, I...”) Tell a story using inflection and emotion

3 Making Comments Make a comment using a related phrase (i.e., “Me too”) Make a comment using a 1- to 2-word remark (i.e., “Awesome!”) Figure 2

About the Author Kerry Mehaffey Mataya, M.Ed. Kerry Mehaffey Mataya, M.Ed., received her master’s in education with an emphasis on Autism and Asperger Syndrome from the University of Kansas in 2003. In 2004, she started her own business, Autism Asperger Syndrome Consulting Group, LLC (AASCG) (www.aascg.com), in the Birmingham, Alabama, area, where she consults for state school systems She is also the founder of Asperger Connection, Inc., a nonprofit that seeks to provide funding to enhance the quality of life for individuals with HFA and AS.

THIRD EDITION 2010 •

Autism Advocate 49


feature Improving Communication

photo Courtesy of the May Institute

]

I h av e alway s t r i e d t o s u r r o u n d m y s e lf w i t h i nt e r e st i n g , ca r i n g an d t h o u g h tp r o v o k i n g p e o pl e w h o h e lp m e b e tt e r u n d e r stan d m y s e lf an d t h e w o r l d around me.

By Susan M. Wilczynski, Ph.D., BCBA

“Mary” is a wonderful example of such

Learning Each Other’s Language Strategies to Improve Communication Between Neurotypicals and Individuals on the Autism Spectrum

a friend. With an IQ in the stratosphere, she can talk circles around me in the area of mathematics. But discussing other topics–such as relationship issues–can be a challenge for Mary, who was diagnosed with Asperger’s Disorder at the age of 51. Mary thinks not in words, but in pictures and colors. That means she must translate images and colors into appropriate words before she can ask or answer questions, or offer one of her enlightening, often entertaining insights. But this extra effort does not stop Mary from persevering in her

50 Autism Advocate

• THIRD EDITION 2010


Improving Communication [

relationships with others, and finding ways

It is also important to recognize that

to be heard and understood. Over the years,

respect should be mutual. Individuals

Mary, a college professor, has developed

on the autism spectrum sometimes feel

many compensatory strategies that assist

disrespected by neurotypicals as well.

her in communicating with “neurotypical”

All too often, neurotypicals speak to

people–those of us who are not on the

individuals with ASD as if they were

autism spectrum.

incapable of understanding complex issues

Communication, however, is a two-way

or like they were children.

As an individual with Asperger’s,

street: The necessary ingredients for

“I’ve had people treat me like a child many

Mary offers her perspective of some

effective communication apply equally to

times, and I felt very disrespected,” Mary

individuals on and off the spectrum. It is

shares. “It was very hard for me. I just felt

vitally important that neurotypicals also

very put down…and I felt distrust toward

develop strategies for communicating

those people.”

effectively with family members, friends

Tips on Bridging the Communication Gap

of the communication challenges that can occur between neurotypicals and individuals on the autism spectrum. No two neurotypicals process information exactly the same way; this is also true for individuals on the autism spectrum.

and colleagues who have autism spectrum

Trust is Built on Truth

disorders (ASD). This article contains

To be honest, human beings lie. Some

overcome some of those challenges.

observations and suggestions that will help

people tell outrageous lies, adding juicy

Mary’s unique outlook helps illustrate the

people from both groups learn to improve

details to enhance their fabricated facts.

value of taking time to better understand

their communication with each other.

But most of us are more apt to lie by

those whose life experience may be

remaining silent, telling “lies of omission.”

different from our own.

Neurotypicals almost expect this to occur

]] Get to know us as individuals. Each person on the autism spectrum is different just as any two neurotypical people are different.

Individuals on the autism spectrum sometimes feel disrespected by neurotypicals as well.

on a regular basis and we tend to forgive “little white lies” very easily. Mary was quick to help me understand that all lies are a violation of trust for individuals on the spectrum. If someone with ASD asks you a question, there are only two good choices to consider. First,

Mutual Respect As Mary reminds me, social rules can be confusing to individuals on the autism spectrum. As a result, they might sometimes interact with neurotypicals in a way that may seem disrespectful. For example, some individuals on the autism spectrum may ask questions that are too intimate or intrusive, or give the impression of challenging authority or established guidelines. They do not do this to make us

you can answer the question directly. It is best to provide the clearest explanation possible, leaving out any subtext. Or you can say, “I’m not comfortable answering that question.” Some individuals with ASD may not understand your desire to keep certain information to yourself and may ask why you are not comfortable answering the question. This situation may present its own unique challenge, but at least you have not violated their trust by telling a lie.

feel uncomfortable; oftentimes, they are

There is an emotional aspect of

simply trying to understand our decision-

communication to consider too, according

making process. Neurotypicals need to be

to Mary. When she was a girl, and

certain that disrespect was intended before

something was wrong, people would say,

they react.

“There, there; it’s going to be okay.” To

Her tips, below, offer insight on how to

]] W  e are an intensely creative people, and we also love details. Talking to us about our special interests is a great way to begin a friendship. ]] N  ever mistake our naiveté for being childlike. We can be very deep emotionally and very mature in ways that may only become apparent after you get to know us. Avoid patronizing us or treating us like children. ]] Many of us are frightened or mistrustful of people in authority, but when we see that they are doing their jobs properly, we become less fearful. However, some of us have had authority figures judge us harshly and misunderstand our feelings and motives. As you take the time to know us and we see that you are not prejudging us, it will be easier for us to trust you completely. ]] W  here appropriate, make it clear what the rules are–and be consistent.

continued on page 52

THIRD EDITION 2010 •

Autism Advocate 51


]

Improving Communication continued from page 51

(These rules may be complicated, but as long as they are explained, we do not mind.)

...neurotypicals often speak using idioms and abstract concepts.

]] Presume honesty. We may fail to make eye contact because it makes us feel anxious. We may be nervous in social situations with new acquaintances. Some may construe our symptoms of anxiety as related to lying, and may not believe or trust us. If anything, however, most of us are honest to a fault.

]] T  ell us if we are making you uncomfortable. For example, if we invade your personal space, and you just move away, we may not understand why. If you say something like, “I am not comfortable with someone standing that close, but six inches farther apart feels good to me,” we will generally be very willing to do that, and not feel hurt. ]] W  e like logical explanations. When you are explaining something to us, it is often easier for us to understand if you give us details first and the big picture second. ]] W  e often lack competence with social skills and interpreting people’s intent. Do not use social constructs in explanation, but define things logically and factually. We may verify and clarify often, and although this can seem as if we are being difficult, it is vital to our understanding. In addition, you will often find it important to verify and clarify your understanding of what we say. We greatly appreciate patient people.

continued on page 53

52 Autism Advocate

• THIRD EDITION 2010

photo Courtesy of the May Institute

]] W  hen we answer your questions literally, we mean no offense. If a woman asks if she looks fat in a particular dress, many of us will just look at her, decide if she does and give our opinion. If you feel hurt by anything we say, please know that we do not mean to be hurtful. Many of us cannot read your face to know we have hurt you. We will know only if you tell us.

Mary, this felt like a lie because they were

are more likely to occur in a conversation

not trying to help her fix the situation.

between an individual with ASD and a

“The flip side of that is that someone like

neurotypical. Why? Because neurotypicals

me might see a neurotypical person who’s

often speak using idioms and abstract

hurt and say, ‘Oh, I can fix that,’” Mary

concepts. In addition, our conversations

explains. “We forget that the person needs

sometimes have underlying subtext—

us to empathize first and then offer helpful

unspoken opinions and emotions that can

suggestions. The lesson here is that we

be easily misinterpreted or misunderstood,

should all learn how to speak each other’s

even by neurotypicals. Mary understands

language. People on the spectrum need to learn how to empathize first and fix things second, and neurotypicals need to say, ‘It’s going to be all right’ and then, ‘I’m going to help you fix it.’”

that we neurotypicals often speak this way without being aware of it. Yet, these are exactly the communication issues that most challenge people on the autism spectrum. We can improve communication by better

Verify and Clarify

monitoring these patterns in our own

While misunderstandings can arise in

speech when we interact with a person

conversations between any two people, they with ASD.


Improving Communication [

When conversing with most people on

forms of alternative and augmentative

the autism spectrum, it can be helpful to

communication. The fact that someone uses

“verify and clarify.” That is, you should

an alternative to speech for communication,

confirm that what you said has been

however, does not mean that he or she is

understood in the manner you intended.

incapable of sustaining a positive, complex

If a miscommunication has occurred, you

social interaction.

should clarify your intent or content. Do

Some individuals with ASD have family

not be surprised if individuals with ASD

members, friends or support staff who

need further clarification. Of course, this

assist them when they go out into the

may also happen in conversations between

community. Unfortunately, some people

neurotypicals. Respectfully requesting and

in our communities do not look at and

adding clarification should be our goal

respond to the individual with ASD, but

regardless of our communicative partner.

instead interact with the adult who is

Nonverbal Communication Keep in mind that much of what we communicate with each other happens nonverbally. Our interest in initiating and maintaining a social interaction is conveyed in our posture, facial expression and eye contact. Furtive glances at the door may indicate an intense desire to escape. Like many people

continued from page 52

]] A  void labeling us as “difficult” or “retarded,” or using other pejorative and prejudicial terms. This makes us anxious, and anxiety makes many of us less able to communicate effectively. ]] W  e have never been typical for even one day, but we would love to understand you, and like it when you try to understand us. ]] W  e want to be given freedom and allowed to grow, and be provided the supports to do so.

attempting to facilitate the discussion. We must encourage people to bear in mind that the communication is between the individual with ASD and themselves. Individuals on the spectrum will have a hard time learning the value of interacting with others if people do not communicate directly with them.

Final Thoughts Although I have spent a good deal of my professional life learning about ASD and writing about effective treatments for autism and other developmental disorders, I still have much to learn. I have learned a lot about Asperger’s and other ASDs from

on the spectrum, Mary works hard to better

Whether a person communicates through

Mary, but this is not all she has taught me.

understand these nonverbal cues.

speech, a device or pictures, the goal is to

Mary teaches me about perseverance as she

effectively engage another person in an

continues to use her analytic strengths to

Alternative and Augmentative Communication

interaction that serves a mutual purpose.

grow and change as a person—something

When sustaining a social communication

we all should do. Mary teaches me about

In some cases, people with ASD have

with an individual on the spectrum (or

understanding as she knows that my

co-occurring intellectual disabilities that

anyone else), the same rules apply: mutual

response to an email may be a week or two

limit their ability to speak. For others,

respect, trust/honesty, verify/clarify. We

behind schedule. Mary teaches me that there

attempting to produce speech is too

must be careful not to dehumanize or

are always new ways to look at the world.

difficult or inefficient. These individuals

disrespect an individual simply because

And she brings joy to my life because there

are more likely to communicate using

they use alternative communication

is almost always something to laugh about

speech-generating devices or other

strategies.

when we communicate with each other.

About the Authors Susan M. Wilczynski, Ph.D., BCBA, and “Mary” Susan M. Wilczynski, Ph.D., BCBA, is the Executive Director of the National Autism Center in Randolph, Mass. As Chair of NAC’s National Standards Project, she has worked with experts nationwide to establish national standards of education and behavioral intervention for children with autism. Dr. Wilczynski holds a joint appointment with the May Institute, where she serves as Senior Vice President of Autism Services. “Mary” is a well-respected college professor at a large university in the Northeast. Diagnosed with Asperger’s at the age of 51, she is also the mother of three children.

THIRD EDITION 2010 •

Autism Advocate 53


What‘s new at the autism Society ]

Autism Society News

News

Autism Society 41st National Conference a Success!

41st Conference Photos

Parents, individuals on the spectrum, educators, doctors, bloggers, politicians, Miss Texas and even a longhorn steer were in attendance at the Autism Society’s 41st National Conference at the Hyatt Regency Reunion in Dallas July 7-10. In his opening address to a crowd of 1,500, Autism Society President and CEO Lee Grossman called for society to redefine autism in a way that reflects its true meaning as a “whole family, whole community” condition in order to better serve those affected. “Unemployment in the autism community exceeds 70 percent, far higher than the national average,” Grossman said. “Autism is the fastest growing population in U.S. special education, and yet students aging out of the school system are often unprepared to live independently.

Stars from the respite care theatre performance

Costs for health care and housing are left to overstretched parents to handle in the absence of a national commitment to the quality of life for every American—including those with autism.” Following Grossman’s speech, Obama administration officials Kareem Dale and Sharon Lewis spoke about the Administration’s efforts on autism and took questions from the audience. On Friday, July 9, outgoing Autism Society board chair Dr. Cathy Pratt spoke about autism as a whole-family condition, and on Saturday, July 10, Michelle Garcia-Winner moderated a panel of bloggers on the spectrum—Sandy Yim of www.AspieTeacher.com, Jason Ross of www.DriveMomCrazy.com and Alex Plank of www.WrongPlanet.net. Other highlights from the

Autism Society President and CEO Lee Grossman called for society to redefine autism in a way that reflects its true meaning as a “whole family, whole community” condition in order to better serve those affected.

conference included the informative Science Symposium

(l-r) Lee Grossman, Miss Texas Ashley Melnick, Kareem Dale, Sharon Lewis and Cathy Pratt

on environmental exposures and child development, a panel discussion on the proposed changes in the DSM-5 regarding autism spectrum disorders, a presentation on AMC Theatres’

pilot employment program, an exhibit hall of 120 booths, a theatre performance by children participating in the respite care program and much more. Conference attendees even had a chance to let loose Friday night at the “Saloon it Up” event, where they learned to dance the two-step and had the chance to get their photo taken with Jake, a real longhorn steer.

“Jake,” the longhorn steer

Thank you to everyone who made the 2010 National Conference so successful, especially to the Autism Society chapters in attendance who helped represent the organization so well. The Autism Society would also like to thank its sponsors: AMC Entertainment Inc., Autism Pro, Eden Autism Services, Autism Research Institute, MetLife Center for Special Needs Planning, Easter Seals, EmFinders, The Daniel Jordan Fiddle Foundation, Baylor College of Medicine, College Internship Program, Indiana Resource Center for Autism, Monarch Center for Autism, Walden University and the Autism Treatment Center. Online conference recordings are available for free for all conference attendees (instructions were emailed to all attendees) and are also available for purchase for those who were not able to attend. See www.autism-society.org/conference for ordering information. 54 Autism Advocate

• THIRD EDITION 2010

More performers from the children’s theatre


Autism Society News [

News

News

Autism Society Announces New Board Members The Autism Society is pleased to announce four new board members: Sergio Mariaca, Jon Basinger, Bob Cassidy and Andrew Baumann. Sergio Mariaca is the owner of Mariaca Wealth Management, LLC, a Photo courtesy of Sondra Williams

financial services company in West Palm Beach, Fla. Jon Basinger, a commercial real estate and business broker, is a partner at McShaneBasinger, LLC, in Atlanta, Ga. Bob Cassidy is co-founder of the 7 Summit Challenge, and splits his time between his philanthropic endeavors and furthering along early stage Internet

Obama Administration Officials Address Autism Society National Conference

projects, including development of online and iPhone applications. Andrew Baumann

At the Autism Society’s 41st National

the Administration’s “Year of Community

is the President & CEO of New York Families

Conference in Dallas, Kareem Dale, Special

Living” initiative and its support of World

for Autistic Children, which develops and

Advisor to the President on Disability Policy,

Autism Awareness Day. Ms. Lewis discussed

institutes a wide variety of programs and

and Sharon Lewis, Commissioner of the

the impacts that health-care reform will have

services for New York families who have a

Administration on Developmental Disability

on the autism community, and expressed a

child with a developmental disability.

(ADD) addressed attendees as the keynote

need for the national conversation around

The Autism Society is seeking applicants

speakers on Thursday, July 8. Both speakers

autism to shift to a discussion of community

to fill open positions on its board of

discussed efforts the Obama Administration

and inclusion. Ms. Lewis also expressed that

directors. The board has changed from

has undertaken to promote community living

ADD is actively working on the long-term

an elected body to an appointed board.

and improved public policy for people with

supports and services that adults with

Qualified applicants should be creative,

disabilities and autism. Mr. Dale discussed

autism need to be successful.

understand complex issues, be open to new and challenging concepts, view change

News

as necessary and positive, and have the ability and time to serve the Autism Society.

Autism Society CEO and New Board Chair Join New Board Member on Pikes Peak Climb

individuals who reflect diversity, including, Photo courtesy of Bob Cassidy

Autism Society President and CEO Lee

Additionally, the Autism Society desires

Grossman and new board chair Jim Ball joined new board member Bob Cassidy and Mary Hansen, Project Manager for the 7 Summit Challenge (see next page), on an exhilarating

but not limited to, age, gender, sexual orientation, geography, economic status, disability and ethnicity. To view the full qualifications and download an application, please visit: http://tiny.cc/5u57a.

but challenging 26-mile climb to (and from) the summit of Pikes Peak in Colorado. At 14,115 feet, it is one of Colorado’s 54 “fourteeners.” Bob Cassidy is an experienced continued on page 56

(l-r) Lee Grossman, Mary Hansen, Bob Cassidy and Jim Ball at the summit THIRD EDITION 2010 •

Autism Advocate 55


What‘s new at the autism Society Autism society news continued from page 55

News

mountain climber who, along with climbing

Autism Society Welcomes New Senior VP, Scott Badesch

partner Bob Dickie III, is climbing the “Seven Summits” (the highest mountains of each of the seven continents) over the next three years

The Autism Society is pleased to

to raise funds and increase awareness for the

announce our new Senior Vice President

Autism Society, Alzheimer’s Association and

of Development and Operations, Scott

Lance Armstrong Foundation. In January 2010,

Badesch. In his position, Scott is responsible

Bob Cassidy and Bob Dickie III summited Mt.

for oversight of our day-to-day operations as

Kilimanjaro in Tanzania, the tallest mountain

well as fundraising and development efforts.

in Africa. The next scheduled climb is Mount Aconcagua in Argentina in January 2011.

Photo courtesy of Hannah Cary

]

Previously, he was the CEO of the Autism Society of North Carolina. He worked for

To donate to this extraordinary effort, please

many years for the United Way: as President

visit http://tiny.cc/4rzxq. Please note that

& Chief Professional Officer of the United

from the School of Social Services, University

Way of Palm Beach County in Boynton

of Chicago, and a B.A. from the University of

Beach, Fla.; as President & Chief Executive

Illinois, Urbana. He and his wife Phyllis have

Officer of the United Way of South Carolina;

four children, ages 23, 22, 20 and 14, two of

and as Director of Services for the United

whom are adopted from South Korea and one

Way of Suburban Chicago. He has an M.A.

son who lives with autism.

100 percent of donations will go to the charity or charities you designate; no portion will be used for climbing expenses. If you wish to get involved in a bigger way but don’t have enough time to climb mountains, you can become part of the 7 Summit Challenge team from home

Scott Badesch

by hosting an event to raise awareness and funds for the Autism Society. The Challenge

News

will provide the tools and fundraising tips—you provide the people. For more information,

heroes, President Barack Obama, and shook

please visit http://tiny.cc/4rzxq.

his hand—twice. “I still think it’s like a dream that’s not really happening,” said Williams. “The only higher

Photo courtesy of Jennifer Repella

person than him is God—that’s the only

Sondra Williams at the West Wing

Donate! 1 in 110 children born in America today will have autism. Please help support the Autism Society’s mission of improving the lives of all affected by autism by texting AUTISM to 50555 to make a $10 donation.

Autism Society Advisory Panel Member with Autism Meets President Obama

• THIRD EDITION 2010

Williams, who lives in Columbus, Ohio, is a married mother of four children, all of whom have been diagnosed with Asperger’s Syndrome, and a grandmother of two. She is a self-published author and recently took up dance lessons. One of the characteristics Williams respects about the President is the resilience he showed during the presidential campaign. “He didn’t let the water ripple

A dream came true for Sondra Williams,

under his feet; he just stood there strong,”

a woman with autism and member of the

she said. “ To me, I think he really represents

Autism Society’s Panel of People on the

the people … he didn’t come from a lot of

Spectrum of Autism Advisors. On July 26,

money and wealth.”

the 20th anniversary of the Americans with Disabilities Act, she stood with one of her

56 Autism Advocate

higher person I haven’t met yet.”

continued on page 57


Autism society news [ continued from page 56

Williams’ invitation to the White House event came during the opening keynote at the Autism Society’s 41st annual conference in Dallas last July , during which Williams, from her seat in the audience, gathered her courage and addressed speaker Kareem Dale, Special Assistant to the President for Disability Policy. Photo courtesy of Sondra Williams

“If you ever see President Obama, would you please tell him I’m one of his biggest fans and would like to meet him one day?” she asked before returning to her seat. Dale’s response was unexpected: “Want to come meet him later this month?” President Obama greets attendees at the ADA anniversary event

Looking back on that moment, Williams said she thought Dale was joking. “I didn’t

she said.

“He didn’t let the water ripple under his feet; he just stood there strong,” she said. “To me, I think he really represents the people … he didn’t come from a lot of money and wealth.”

She got the confirmation about four days

would smell like, if he would have a nice

What resonated with her were Obama’s

before Monday’s event that she was due to

voice and if he was very tall.

remarks about his father-in-law who had

He was very tall, smelled nice, and was

multiple sclerosis. He got up to work each

soft-spoken and calming, she reported later.

day to provide for his family and attended

“He was just okay with everybody that was

every dance recital and sports game,

in his space.”

Williams said.

When they met in the West Wing’s Map

One of the most exciting parts of the day

Room, Williams got to tell Obama that she

for her was witnessing the President sign

supported him, and the two posed for a

an executive order to increase federal

photo. Williams would have liked to speak

employment of individuals with disabilities.

with him in more detail about the various

Williams said she would like to see the ADA

barriers and challenges people with autism

protections expanded to those with social

face, but there was not enough time, she said.

and behavioral disabilities—those who are

mean for him to truly have me see him; I just wanted him to give him the message,”

meet the President privately—one of only 12 people invited to do so. Friends in her hometown helped her prepare for the big day, such as helping her choose the right new dress. “Normally, I need lots more time,” she said. “That was fast for me, but I still did it.” Waiting to meet with the President in the West Wing of the White House, Williams was “very, very, very excited and anxious, and trying to figure out what was going to happen,” she said. Then, she was escorted

many times “locked out of the loop,” she said.

into a room where she got to meet the

She also brought the President a letter

musicians and actors participating in the

(http://tiny.cc/pc8lw) she wrote to him, a

ceremony, including Patti LaBelle, someone

book she authored called Reflections of Self

“There’s still too many people being

she had always liked on television and

and another book written by a friend. “I just

institutionalized and held there against their

soon learned she liked in person. “She’s

wanted to meet him and give him gifts, so that

will,” she added.

just caring and affectionate to all kinds of

when he looks at my book he will remember

Meeting the President was one of Sondra’s

people,” Williams said.

my story and know who I am,” she said.

biggest dreams. If she could share one

While she waited, Williams thought about

Later, Obama shook her hand again while

lesson from the experience, she said, it

her meeting with the President from a

walking to the podium during the public event.

would be from the President’s famous

sensory perspective, wondering what he

“Hi, again,” Williams remembers him saying.

campaign chant: “Yes, I can.”

“As autistics, we don’t always look disabled.”

THIRD EDITION 2010 •

Autism Advocate 57


What‘s new at the autism Society ]

Advocacy

ADVOCACY

ADVOCACY

Autism Society Joins White House to Commemorate 20-Year Anniversary of the Americans with Disabilities Act

Autism Society and AMC Join Disability Advocates to Inspire Employment Policy Change On July 29, the Autism Society co-

in the workplace. Ward eventually quit

sponsored a briefing on Capitol Hill

after being asked to train a new employee

called “Promoting Employment First:

who was hired to be her supervisor. She

The Autism Society joined disabilities

Innovations in Policy and Practice to

then got a reference desk position at a

advocates from across the nation as the White

Achieve Integrated Employment with

new organization. Ward’s new colleagues

House marked the 20th anniversary of the

Livable Wages for Citizens with Significant

believed in her, and their support turned her

Americans with Disabilities Act on July 26.

Disabilities.” This information session was

into a different person.

Autism Society President and CEO Lee

co-sponsored by disability advocacy group

Grossman and Susan Pieples, president of the

TASH and the Collaboration to Promote

Autism Society of Indiana, were invited to the

Self-Determination (CPSD), a network of

White House to mark the occasion. Sondra

national organizations, including the Autism

Williams, a person on the autism spectrum

Society, that promotes opportunities for

and member of the Autism Society’s Panel of

people with disabilities.

People on the Spectrum of Autism Advisors,

One of the featured speakers was Nancy

president of Marc Gold and Associates,

also attended the event.

Ward, a TASH board member and self-

a network of training consultants who

Williams received the invitation to attend the

advocate who used to work in a sheltered

specialize in employment and community

anniversary celebration at the Autism Society’s

workshop. A sheltered workshop is a

participation for individuals with disabilities.

41st National Conference in Dallas earlier

segregated workplace environment that

in July. After asking about crisis situations

specifically employs people with disabilities.

during a keynote session, Williams stated her

“In a segregated setting, people do not

Curt Decker, executive director of the

support for the President and was offered the

believe in you, so therefore you don’t

National Disability Rights Network; and

opportunity to meet him. Autism Society staff

think you’re capable of doing things,” said

Keith Wiedenkeller, senior vice president of

also attended events at the U.S. Congress,

Ward, who responded to this lack of faith

human resources and chief people officer of

hosted by House Speaker Nancy Pelosi (D-

by conducting herself inappropriately

AMC Entertainment.

“If we looked at Nancy’s story as a policy challenge, it would beg the question ‘what should be the proper set of supports that Nancy should have had available?’” said another panel member, Michael Callahan, a TASH board member. Callahan is the

Other speakers of the briefing included TASH executive director Barb Trader;

CA) and Senator Tom Harkin (D-IA). The Americans with Disabilities Act is designed to protect individuals from discrimination in employment, state and

ADVOCACY

local government, public accommodations,

Autism Society Applauds U.S. House Support of the TRAIN Act

commercial facilities, transportation and

On September 23, the U.S. House of Representatives passed the Training and Research for

telecommunications. The Act defines

Autism Improvement Nationwide Act (H.R. 5756), a bill that would provide training initiatives,

individuals with a disability as those with

vital assistance and education for adults and children with autism and other disabilities, and

physical or mental impairments that

their families.

substantially limit one or more major life

“The TRAIN Act will go a long way toward improving the lives of those affected by autism in

activities, according to its website,

terms of providing critical support and services,” said Autism Society Vice President of Public

www.ada.gov.

Policy Jeff Sell. “Now, it’s on to the Senate to finish the mission and get a bill to President Obama.” The TRAIN Act would authorize grants to the national network of University Centers for Excellence in Developmental Disabilities (UCEDD) to provide interdisciplinary training, continued on page 59

58 Autism Advocate

• THIRD EDITION 2010


Advocacy [ continued from page 58

continuing education, technical assistance and information in order to improve services for those with autism and developmental disabilities. The bill also provides additional funds for UCEDDs to partner with minority-serving institutions to provide services, and conduct research and education focused on autism communities from racial and ethnic minority populations. The bill also looks to address the unmet needs of individuals on the autism spectrum, a population of 1.5 million and growing, many of whom lack the necessary support to be able to work and live independently. With 1 in 110 individuals born with autism in America, it is urgent that the Senate pass this bill now to ensure the autism community receives the additional resources so clearly needed. The bipartisan TRAIN Act was introduced by Reps. Mike Doyle (D-Pa.) and Chris Smith (R-NJ) on July 15. It was approved by the House Subcommittee on Health on July 22 and unanimously approved by the House Energy and Commerce Committee on July 22. The TRAIN Act was originally included in the House version of the America’s Affordable Health Choices Act of 2009, but was rejected from the final health-care reform law. The next step is for the bill to be approved in the Senate.

You can start your own challenge... walk, run, or bike for autism! Join with others to volunteer or support autism events being held in your area or across the nation. Together, through 1Power4Autism, everyone can make a difference! Visit www.autism-society.org/ site/1Power_LandingPage to turn on your power.

ADVOCACY

Momentum Builds in Congress to Overhaul U.S. Chemicals Policy On July 22, Congressmen Bobby Rush (D-IL) and Henry Waxman (D-CA) introduced a groundbreaking bill to overhaul Photo courtesy of istockphoto.com

U.S. chemicals policy in the House Energy & Commerce Committee. The “Toxic Chemicals Safety Act of 2010” is intended to overhaul the 1976 Toxic Substances Control Act (TSCA), which has failed to regulate chemicals in consumer products— even those that have known links to cancer,

interaction between environmental toxins

scientists have increasingly linked to toxic

and autism spectrum disorders,” Autism

chemicals found in our homes and places

Society President and CEO Lee Grossman

of work,” said Andy Igrejas, Director of

said. “We applaud reforming the Toxic

Safer Chemicals, Healthy Families, a

applauds this initiative in hopes that it will

Substances Control Act and hope this

coalition of 250 environmental and public

bring about changes to improve the quality

legislation will eventually bring about more

health groups, of which the Autism Society

of life for individuals with autism and protect

stringent safety review of chemicals to

is a founding member. “It will also give

all from exposure to environmental toxins.

improve the quality of life for all individuals.”

American manufacturers and retailers

“The Autism Society has been the

“Today’s legislation will reduce chronic

leading autism organization exploring the

disease in this country, a burden that

learning disabilities, asthma, reproductive disorders and other serious health problems. The Autism Society, with the Safer Chemicals, Healthy Families Coalition,

the tools they need to compete in a world continued on page 60 THIRD EDITION 2010 •

Autism Advocate 59


What‘s new at the autism Society ]

Advocacy & Conferences continued from page 59

conferences

demanding safer products. We applaud Chairman Rush and Chairman Waxman for leading the way.” The House legislation would significantly strengthen public health protections from toxic chemicals. For the first time, the chemical industry would be required to demonstrate that chemicals are safe, rather than the EPA having to prove they are Photo courtesy of the Orlando CVB

unsafe. In a major shift, the legislation would require chemical manufacturers to provide basic health and safety information for all chemicals as a condition for them remaining on or entering the market, and to make that information public. Other elements of the legislation would require: • Chemicals to meet a health standard to enter or remain on the market. • EPA to identify and restrict the most toxic chemicals that build up in our food chain and in our bodies, such as brominated flame retardants. • Populations most vulnerable to toxic chemicals, including pregnant women, infants and children, and those living Photos courtesy of the walt disney company

in environmental “hot spots,” to have extra protections from toxic chemicals. • EPA to rely on the National Academy of Sciences’ recommendations to incorporate the best and latest science when determining the safety of chemicals. This bill follows a similar bill introduced in the Senate in April by Senator Lautenburg

Save the Date for the Autism Society’s 2011 Conference

(D-NJ) called the “Safe Chemicals Act

The Autism Society’s 42nd National Conference & Exposition will be held in Orlando, Florida,

of 2010.” For the past several months,

at the Gaylord Palms Hotel and Conference Center (the site of our 2008 conference) July 6-9,

Congressmen Rush and Waxman have been

2011.

meeting with key stakeholders, including industry representatives, health and environmental advocates, and the EPA, to come up with a balanced bill. 60 Autism Advocate

• THIRD EDITION 2010

The Call for Papers is now open. Visit the conference website now for more information at www.autism-society.org/conference. Exhibit sales have begun; for more information, contact Meg Ellacott at (302) 260-9487 or ellacott@autism-society.org.


Chapter News [

chapter news

Photo courtesy of Autism Society Broward

Photo courtesy of Lynn Stansberry Brusnahan

chapter news

L. Lynn Stansberry Brusnahan Surfers enjoy a beautiful day

Autism Society Announces New Chapter Relations Chair

Autism Society Broward Hosts Surfing with the Stars Program “Life is about riding the waves, hanging 10

the city of Hollywood Ocean Rescue Beach

National Board Chair Jim Ball has appointed

and sharing beautiful sunny South Florida

Patrol, B-C Surf and Sport, the Surfrider

L. Lynn Stansberry Brusnahan to chair the

days for more than two dozen kids and

Foundation-Broward County Chapter,

board’s Chapter Relations Committee.

adults with autism as they participate in

Andra’s Hand and the East Coast Surfing

A national board member, Lynn is a

the Autism Society Broward Surfing with

Association-Broward County Chapter.

professor at the University of St. Thomas

the Stars program,” says Stacey Hoaglund,

Without the help and support of each of

in Minneapolis, where she coordinates

board member of the Autism Society

these vitally important organizations, the

the Autism Spectrum Disorders Graduate

Broward County. On August 22, 2010,

program would not be the success it is

Certificate and Master of Arts Program. She

individuals across the autism spectrum

today.

succeeds Liz Freeman Floyd, who recently

came out to enjoy a day of surfing. Some

resigned from the national board and the

refused to enter the water, but by the end

Chapter Relations Committee to devote

of the day they were riding the waves in

more time to her doctoral studies. We thank

style. The day began with a quick run along

Liz for her hard work and dedication as

the beach, splashing around in the surf

chair of this very important committee, and

and familiarizing the participants with the

welcome Lynn to her new position. Since

boards while still on the sand.

Lynn is already a member of the committee,

The program has been in existence for

we are confident that she will make a

two years and will be held again in the

seamless transition to her new role.

spring. Since it is continuously evolving, participants can come and go as they please, which allows the program to benefit the hundreds of children and adults with autism in the South Florida community. There is a host of supporters of this event, including volunteers from Hang Loose Surf

The days are filled with more than surfing. There are kayaks, paddle boards and sand toys for all to enjoy. Everyone who attends can find something that will trigger an area of interest, and hopefully develop a passion and respect for the water. Although there are other surfing programs throughout the state of Florida, Autism Society Broward wanted to offer more for its families. Because kids and adults with autism struggle with developing social relationships, the Society found a way to extend this program so that friendships around a common interest can be forged. Community support of the program has been astounding. Since the program’s

School, Inc., Nova Southeastern University’s Center for Autism and Related Disabilities,

continued on page 62 THIRD EDITION 2010 •

Autism Advocate 61


What‘s new at the autism Society chapter news continued from page 61

chapter news

inception in October 2008, numerous

Chapter Leader Presents at CEC Conference in Latvia

private and public organizations have

Students Diagnosed with Autism Spectrum

stepped forward to sponsor the clinics.

Disorder.” As a part of the presentation, she

Along with community support come

distributed over 60 copies of the Advocate

awareness and appreciation for the

to attendees within an hour and a half. A

Photo courtesy of Bonnie Kimpling-Kelly

]

accomplishments of people with autism. Through this program, the entire South Florida community will understand what individuals with autism can accomplish despite sometimes tremendous obstacles. For information on how to develop a surfing program in your area, please contact Autism Society Broward at www.asabroward.org.

Children (CEC) International Conference for Inclusion in Riga, Latvia, last June. In November 2008, she visited the Russian

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conference. Clearly, interest in autism and other related disorders is not limited to the U.S., as over 60 countries were represented promote the practice of inclusion. There

Bonnie Kimpling-Kelly, president of presented at the Council for Exceptional

The Autism Society thanks all of our advertisers for advertising in this issue of the Autism Advocate. When contacting any of our advertisers, please tell them you saw their ad in the Autism Advocate.

receive copies of her presentation after the

at this international conference to

Bonnie Kimpling-Kelly holding an Autism Advocate

the Autism Society of Northwest Ohio,

Index of Advertisers

number of attendees also signed up to

Federation as part of a special education delegation. During her trip, she brought 80 copies of the Autism Advocate to give to professionals in Moscow and St. Petersburg. The magazine was so well received that when she was invited to Latvia, she brought gifts of the Advocate again.

is growing interest worldwide to adopt inclusive practices and explore the latest research, best practices and innovation in making the world a better place for all children, regardless of ability. More than 500 educational practitioners, researchers, policymakers and activists were in attendance, including Dr. Elena Kozhevnikova, director of the Early Intervention Institute of St. Petersburg, who Bonnie and her colleagues had met on their trip to Russia. They were able to schedule a meeting in St. Petersburg with her after the

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Jo Kliewer-Mal’akhim, Bonnie presented

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HeartSpring

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Kennedy Kreiger Institute

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The Glenholme School The Help Group

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Tuned into Learning

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UNC School of Med

33

62 Autism Advocate

• THIRD EDITION 2010

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2010 3rd edition of the Autism Advocate