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...
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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…
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Live Well
Defining Personal Quality of Life Employment and Health Keeping Fit Diet and Nutrition
AUTISM Advocate
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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.
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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
• THIRD EDITION 2010
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 •
Autism Advocate 9
]
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
• THIRD EDITION 2010
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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
• THIRD EDITION 2010
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
Join over 30,000 people who aren’t content to sit and wait for answers to Autism. Which treatments hold the most promise? Which research studies are yielding breakthroughs today? Are children and adults on the autism spectrum receiving the support they need? It’s questions like these that have driven tens of thousands of people living with autism to join together online to give researchers and policy makers the information they need to find the answers and improve lives. It’s called the Interactive Autism Network and it’s the nation’s largest online autism research effort. Already, it’s increased our knowledge of the disorder, matched qualified participants with research studies, and created a resource for anyone who wants evidence-based information on the latest treatments and findings. We all have questions. Together, we’ll find answers. Join today at IANproject.org
Linking autism researchers and families Volunteer for Research on Autism Spectrum Disorders
Who Can Participate?
IAN, the Interactive Autism Network at the Kennedy Krieger Institute, is looking for volunteers to participate in an online research study. To participate individuals and their families will answer questions online about themselves. The study’s purpose is to increase knowledge about Autism Spectrum Disorders (ASD) and help find effective treatments. IAN will also match willing individuals and families affected by ASDs with local and national research projects.
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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RESIDENTIAL PROGRAMS EARLY INTERVENTION
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w w w. t h e h e l p g r o u p . o r g THIRD EDITION 2010 •
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
ASD Visual Aids
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Along with Julie Bloem Malewska and Anita
conference to discuss educational needs and
Autism Asperger Publishing
11
Jo Kliewer-Mal’akhim, Bonnie presented
the need for a teacher training program in
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47
“Navigating Academic Transitions with
Russia.
Bob’s Red Mill
2
CareTrak 19 College Internship Program
27
The Daniel Jordan Fiddle Foundation
45
Discovery Toys
25
EmFinders 45 GoGoJuice 27 Got Autism LLC
19
HeartSpring
5
Kennedy Kreiger Institute
31
The Glenholme School The Help Group
39 33, 41
Tuned into Learning
35
UNC School of Med
33
62 Autism Advocate
• THIRD EDITION 2010
Advertising Opportunities
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