AUTISM Advocate SECOND ED ITION 2010, Volume 59
R2
Live Well
Achieving Healthy Lifestyles for People with Autism
Defining Personal Quality of Life Employment and Health Keeping Fit Diet and Nutrition And more…
SECOND EDITION 2010 •
www.autism-society.org
In this issue:
Autism Advocate 1
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contents
Summer 2010
spotlight
Page 12
By James F. Gardner, Ph.D.
What Really Matters Defining Personal Quality of Life
i llu st r at i o n co u r t e s y o f i sto c k ph oto.com
departments
features
Page 61
page 7
What’s New at the Autism Society »»Autism Society News »»Advocacy
Evolving to Meet the Needs of Those We Serve
Employment and Health
Are They Connected?
By Stephanie Birmingham
Quality of Life = Fitness + Fun
The Daniel Jordan Fiddle Foundation Addresses Health and Wellness for Adults on the Spectrum
page 23
When Parents are Employed
Planning for Increased Flexibility and Improving Quality of Life By Eileen M. Brennan, Ph.D., Julie M. Rosenzweig, Ph.D., LCSW, and Lisa A. Lieberman, MSW, LCSW
By Linda Walder Fiddle, Esq.
page 36
A Model of Positive Behavior Support for Individuals with Autism and Their Families The Family Focus Process
By Barbara Becker-Cottrill, Ed.D.
Finding Fitness
How (and How Not) to Create Exercise Programs for the ASD Population By Eric Chessen, M.S., YCS
page 48
Oral Healthcare for Children with Autism By Dr. Robert Porper, DDS
page 54
Autism Diets and Nutrition
Providing Health Benefits for Many Children with ASD By Julie Matthews, CNC
page 62
Creating Healthy Environments
The Importance of Reducing Our Risk to Toxic Exposures By Cathy Ficker Terrill, M.S.
AUTISM Advocate F I R S T E D I T I O N 2 0 1 0 , Volume 58
AUTISM Advocate
AUTISM Advocate
AUTISM Advocate
SECO N D E D IT IO N 2009, Vo lume 55
T H I R D E D I T I O N 2 0 0 9 , Vo lu m e 56
FO U RT H E D I T I O N 2 0 0 9 , Vo lu m e 57
R1
R2
R3
R4
Finding a Home
The Autism Advocate
REsIDENTIAL OPTIONs fOR INDIVIDuALs ON THE sPECTRum
THE CRITICAL IMPORTANCE OF SOCIAL SKILLS
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 •
Early Intervention
Transitions in Autism
making FRIENDS 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…
A hEAD START TOwARD A bETTER QuALITy Of LIfE
www.autism-society.org
As a member of the Autism Society, you will receive this publication. For membership information, visit www.autism-society.org/join.
page 42
A Healthy Mouth Leads to a Healthy Body
page 32
page 18
»»Chapter News
Many thanks!
Running Beyond Expectations and Labels By L. Lynn Stansberry Brusnahan, Ph.D.
By NanCy Thaler
»»Conferences
to Red Wiggler Community FarM in Germantown, Md., for allowing us to publish photos of their farm, which employs adults with developmental disabilities. For more information, visit www.redwiggler.org.
The Importance of Recreational Pursuits
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…
IN ThIS ISSuE: Learning the Signs Importance of the Medical Evaluation The Role of Assessment Temple Grandin’s Mother on helping Parents Cope And more…
AUTISMSOCIETY
Improving the Lives of All Affected by Autism
www.autism-society.org
Page 66
page 28
www.autism-society.org
Autism Society 2010 National Awards
The Role of State Developmental Disability Systems
www.autism-society.org
COVER photograph: Red Wiggler farm
The elements that define quality of life for individuals with disabilities and mental illness are changing. Quality of life is now being defined in very personal terms. Individuals are demanding and advocating better results and outcomes for themselves. Organizations need to respond by facilitating outcomes for the person receiving services and supports, thereby internalizing and personalizing quality. The Council for Quality Leadership has developed self-determined and –defined Personal Outcome Measures®, which can enable service and support systems and organizations to learn about an individual’s definition for each of these outcomes, and therefore increase the relevance and effectiveness of services and supports to the individual, leading to increased quality of life.
AUTISMSOCIETY
Improving the Lives of All Affected by Autism
California
SECOND EDITION 2010 •
Autism Advocate 3
message from the President & CEO The Autism Society’s public policy is predicated on three tenets: Human Rights, Systems Change and Quality of Life. First, there is worldwide discrimination against people affected by autism in that services and supports are generally inappropriate, unavailable or denied. Therefore, the problems and needs of the autism community must be identified and addressed in terms of global human rights. The second issue is based on our belief that the systems that serve our individuals with autism and support their caregivers are broken and ineffective. For that reason, we need to effect systems change to create the appropriate methods for provision of comprehensive, seamless and lifespan care and support. And, third, any and all services and supports that are created and provided must improve the quality of life for the individual with autism. This issue of the Autism Advocate is the first in a series of issues dedicated to the notion of improving Quality of Life. At the Autism Society, we are focused on quality of life today, especially regarding programming that will continue to improve the quality of life throughout the lifespan. Thus, we have incorporated into our programs and initiatives an analysis that will evaluate our results, impact and measures based on 9 desired outcomes for a person with autism. These desired outcomes are based upon: 1. School inclusion
6. Supported and independent living
2. Friendship/social connection
7. Supported and independent employment
3. Health and well-being
8. Subjective well-being
4. Academic success
9. Recreation/leisure
Board of Directors
(July 2009-July 2010)
OFFICERS: Lee Grossman, President & CEO Cathy Pratt, Ph.D., BCBA, Chair James Ball, Ed.D., BCBA-D, Vice-Chair John Reedy, Treasurer Liz Freeman Floyd, Secretary
BOARD MEMBERS: James Adams, Ph.D. L. Lynn Stansberry Brusnahan, Ph.D. Jose Cordero, M.D. Barbara Becker-Cottrill, Ed.D., PPA Chair Stephen Edelson, Ph.D. Herman Fishbein Doreen Granpeesheh, Ph.D., BCBA Stephen Shore, Ed.D. Judge Kimberly S. Taylor
HONORARY BOARD MEMBERS: Temple Grandin, Ph.D. Ruth Christ Sullivan, Ph.D.
Autism Advocate 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 Carin Yavorcik
Web Specialist Selena Middleton
5. Autonomy
Design
The principal architect of these Quality of Life Indicators was our late colleague Dr. Ted Carr, and we continue to owe him a debt of gratitude for his contributions to our field and to people with autism and their caregivers. This issue of the Autism Advocate explores some of the means that we can employ, specifically in the area of health and well-being, to improve the quality of life for those living with autism, which is consistent with our goal and our mission to improve the lives of all affected by autism. I look forward to seeing many of you at our 41st Annual National Conference and Exposition in Dallas the week of July 6th.
All the best,
n2design, inc.
Advertising Sales 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.
LEE Grossman Autism Society President & CEO
4 Autism Advocate
• SECOND EDITION 2010
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
Your child trusts you. Who are you going to trust?
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SECOND EDITION 2010 •
Autism Advocate 5
message from the Board Chair Panel of Professional Advisors
To the Autism Society Community:
Barbara Becker-Cottrill, Ed.D. (Chairperson)
Realizing that individuals on the autism spectrum are multi-dimensional with varied needs, the Autism Society focuses on various Quality of Life indicators. One of these indicators, Health and Well-Being, is featured in this issue of the Autism Advocate. Topics
James Ball, Ed.D., BCBA-D Margaret L. Bauman, M.D. Lois J. Blackwell Eric Courchesne, Ph.D. Margaret Creedon, Ph.D.
include recreation, health care, wellness, and diet and nutrition. This issue reminds us
Geraldine Dawson, Ph.D.
of the importance of taking a look at the total person when developing programs and
Anne M. Donnellan, Ph.D. Glen Dunlap, Ph.D.
supports. Too often the sole focus is on educational programming or, as individuals get
V. Mark Durand, Ph.D.
older, work. However, the ultimate goal is to create an enviable life‌. a life that most of
William L.E. Dussault, J.D.
us desire. Our hope is that this issue will inspire new ways of thinking and also guide programming decisions. We need to think beyond the limited roles and activities that are typically provided to individuals. Many thanks to the authors for their contributions to these important topics.
Stephen M. Edelson, Ph.D. Judith E. Favell, Ph.D. Peter Gerhardt, Ed.D. Temple Grandin, Ph.D. Doreen Granpeesheh, Ph.D., BCBA June Groden, Ph.D. Paul Millard Hardy, M.D.
Hopefully, some of you will be reading this issue while attending the Autism Society
Robert L. Hendren, D.O.
national conference. Each year, the Autism Society brings together great content and
Martha Herbert, M.D., Ph.D.
opportunities for networking. This year will be no exception. However, none of this would be possible without the hard work and determination of the Autism Society staff, led by Lee Grossman. Daily, the Autism Society staff responds to requests for information and desperate calls looking for guidance and understanding, and works to inform legislators,
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 Gary LaVigna, Ph.D.
policymakers, the media and community members about the realities of living with an
Bennett L. Leventhal, M.D.
autism spectrum diagnosis. They do their work with a quiet dignity. However, their
Brenda Smith Myles, Ph.D.
work would not have such a broad impact if it were not for the chapters and the work they perform tirelessly. The Autism Society board of directors is dedicated to continue to strengthen the chapter network and to ensure that all chapters are equipped to address
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.
the multiple issues faced in their communities.
Diane Twachtman-Cullen, Ph.D.,CCC-SLP
So, thank you to the Autism Society staff and chapter leaders and members. Your efforts are greatly appreciated. We have much work to do.
Jennifer Twachtman-Reilly, M.S., CCC-SLP Margaret Whelan Michelle Garcia Winner, SLP, MA-CCC Harry Wright, M.D., MBA
Emeritus Members Edward Carr, Ph.D., BCBA (1947-2009) O. Ivar Lovaas, Ph.D. Gary Mesibov, Ph.D. Bernard Rimland, Ph.D. (1928-2006)
Cathy Pratt, Ph.D., BCBA Chair, Board of Directors Autism Society
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
• SECOND EDITION 2010
feature i llu st r ati o n co u r t e s y o f i sto c k ph oto.com
The Role of State Developmental Disability Systems [
S tat e
d e v e l opm e n ta l
d isabi l i t y s y s t e ms ar e , in e ff e c t, t h e cr e at ions of par e n t a d v ocat e s .
By Nancy Thaler
In the early 1970s, when parents of children labeled with the “R” word (regardless of their specific disability—including children
The Role of State Developmental Disability Systems Evolving to Meet the Needs of Those We Serve
with autism) started to advocate for their children, they focused their attention directly on government. Government was, after all, providing services—if parents were willing to place their child in an institution. But many parents did not want to do that. Their logical assumption was that if government would pay for services in an institution, it should also help their children stay at home and live in the community. The case for education was even simpler: Equal access should be available to all children, with and without disabilities.
SECOND EDITION 2010 •
Autism Advocate 7
feature ]
The Role of State Developmental Disability Systems
$43 billion of local, state and federal funds, all but a small number in community
The pressures both to move people out of institutions and to expand services for people on waiting lists...have spurred considerable growth in state services.
settings. Over 57 percent of people now receiving services are living with their families (Prouty, Alba & Lakin, 2008). While we refer to “state systems,” rarely have states actually planned at a systems level. New funding may be available for services and for a handful of administrators to run them, but few resources are ever dedicated to developing system-level activities, such as research, provider training, parent outreach and education,
Humble Beginnings
the development of group homes and, as
In the early days, parent advocates
they expanded in number, parents with
lobbied their legislatures to create and
adults living at home began to view group
fund programs. Programs needed to be
homes as an option for their now-adult
administered, so the Executive Branch
children. And this is how state service
typically named a state agency to
systems evolved. The process of growth
administer the programs—often the already was generally incremental rather than the existing state office of mental health. But result of a grand design or plan. as the programs grew in size, new state agencies were created, which typically had the term “mental retardation” in their title. Today, almost all states and the District of Columbia have ceremoniously dropped “mental retardation” from their title and replaced it with “developmental or intellectual disability.” The earliest state programs were generally modest family support programs funded
During this period of incremental program expansion, many children and adults with autism were receiving services in some fashion, albeit under the diagnosis of “mental retardation.” While we have little data from this time, we do know that children and adults were also being admitted to psychiatric facilities in significant numbers.
oversight or quality improvement. And with demand always exceeding available resources, little effort has been made to reach out to families to help them plan for the future for fear of promising them something that might not be available for many years to come. The pressures both to move people out of institutions and to expand services for people on waiting lists—which are ever growing as baby boomers with developmental disabilities age—have spurred considerable growth in state services. The economic crisis has slowed these efforts for now, but they will resume as state economies begin to recover. But as states have been expanding services, they have also been catching up
completely with state funds. As children
The 1980s introduced new opportunities
began to age out of the public education
for individuals with disabilities and their
prodding from the federal Centers for
system, day programs and sheltered
families. Early in the decade, Congress
Medicare and Medicaid Services (CMS),
workshops were created for them. The
amended Title XIX of the Social Security
states are building quality-assurance
thinking at the time was that sheltered
Act to create the Medicaid Home and
and improvement practices, establishing
work prepared people for real work
Community-Based Services Waiver
systems to qualify providers of service
sometime in the future. During this same
Program. The availability of federal funds
and launching training programs for
period—the 1970s—institutions were
to match state revenues fueled rapid
providers. Some states are implementing
becoming targets of investigation and
expansion of community services in
the Supports Intensity Scale® of the
litigation. After struggling to improve
most states. For the first time, the federal
American Association for Intellectual
these facilities, states began to conclude
government was investing in community
and Developmental Disabilities (AAIDD;
that they should be downsized and/or
services. Today, states are serving
www.aamr.org) in an effort to establish
closed. Institutional closings spawned
approximately 1 million people with over
individualized budgets that are more
8 Autism Advocate
• SECOND EDITION 2010
on building system infrastructure. With
The Role of State Developmental Disability Systems [
equitable and allow individuals and
early 1970s, demanding that government
while actually on the job, rather than in a
families to have more direct control over
do something. State administrators were
place that simulates a work environment.
their services.
confused by the wide range of treatment
But to get back to autism... Advocates for
strategies available and there was little
children’s services have been successful
research on which to base decisions about
in a number of ways. The case has been
whether to cover services, for how long or
made for providing services at a certain
at what cost.
level of intensity and as early as possible.
I must add that interventions for children
There remains uncertainty about exactly
and adults with other developmental
which services are most effective, and at
disabilities have also been undergoing a
what level of intensity and for what length
transformation that state service systems
of time. Research will eventually inform
of “spectrum,” so children who could
have been running to keep up with. The
those decisions, which should lead to better
speak, laugh or hug were not diagnosed
early practice of behavior management
services for more children, delivered in the
with autism. They were often referred to as
has been replaced with proper mental
most cost-effective mode. Until then, there
What about People with Autism? As a former state director of developmental disabilities services, I know that our state systems have been serving many children and adults with autism since the programs began. However, children and adults were not always identified as having autism. And we did not know about the concept
“autistic-like,” without any specific reason
health treatment, including therapies
for using the term. So little was understood
and appropriate medications. Respecting
about autism, and so few strategies had
personal choice and a person’s desire to
been developed to reach children and
fully engage in community life, particularly
adults with autism that, while states did
through work, has in many cases
their best to support them, it wasn’t close to
eliminated problematic behavior as people
good enough. Too often, the result was the
gain more control over the decisions that
use of isolation or restraints to address self-
affect their lives.
abuse, or even discharge from programs—
In addition, technology has opened
and families often felt abandoned.
doors—both literally and figuratively.
In the 1990s, there was an explosion
Communication is enhanced both by
of knowledge about autism and a rapid
technology and by therapists who focus
development of strategies for treatment
on enhancing communication—sometimes
and supports, especially for children.
through the use of communication
Advancements were happening quickly,
devices—rather than just on improving
families were learning about autism faster
speech. Mobility has expanded through the
than state agency administrators or their
use of electronic wheel chairs. And we have
staff, and families were, like those in the
learned that people learn best how to work
will continue to be struggles over types of services, amounts, frequency and length of treatment. On the positive side, these issues are beginning to be sorted out in a number of states through enactment of insurance legislation, adoption of Medicaid service definitions and the introduction of Medicaid waivers. More recently, states have begun to experience the impact of advocacy for adults, which is good news. The more we learn about autism, the more we understand that adults are as responsive to effective interventions and competent support as are children. A few states have introduced specific programs for adults with autism. Particularly challenging to state systems have been those adults who clearly have no cognitive impairments, but rather sensory and language processing problems, challenging the criteria used to determine eligibility for services.
How Can States Serve People with Multiple Disabilities?
There remains uncertainty about exactly which services are most effective, and at what level of intensity and for what length of time.
We are experiencing an exciting period of knowledge explosion on multiple fronts, including autism, gene-related disabilities, mental health disorders, brain injury, trauma, and the brain and neurology and SECOND EDITION 2010 •
Autism Advocate 9
feature ]
The Role of State Developmental Disability Systems
beginning to merge long-term care
Providers and even families must learn not only new ways of thinking, but new practices as well.
programs—and diminishing the role of the developmental disability (DD) agency in the process. Self-advocates and their families will have to work
their integral relationship to physical
result in separate categorical programs
health. We must not compartmentalize this
and systems for people with autism, but
knowledge, but learn to synthesize it into
rather a broad definition of developmental
a coherent whole because the people we
disability that embraces the full range of
are serving rarely have only one isolated
disabilities and is capable of recognizing
disability. People with developmental
the uniqueness of each person.
disabilities typically have multiple issues that require attention, and the systems that serve them need to incorporate knowledge from all domains of disability, as well as from general mental and physical health. We were never serving people with a single, simple-to-understand disability. We made people one-dimensional with the label of “mental retardation.” A
What is the Future of State Developmental Disabilities Service Systems? Although the future is impossible to predict, some of the issues and challenges that will have an impact on the future of state service systems are as follows: • State service systems generally
to preserve the uniqueness of the DD service system, as imperfect as it may be. Individuals with developmental disabilities and their families will need to function as a single community to hold onto and continue to build a robust system of supports to support people with wide ranges of disabilities and implement new and promising practices. • The experience of being born with a disability or acquiring a disability as a child is very different from the experience of acquiring a disability later in life. And the role of the family in providing support to someone with
embrace new ideas. However,
a disability is very different when
to which it points to interventions that
implementing them requires
that disability becomes apparent at
might be helpful. But the label of “mental
considerable effort. Providers and
birth or in early childhood. Families
retardation” explained nothing, serving
even families must learn not only new
and children with developmental
only to stigmatize people as stuck in their
ways of thinking, but new practices
disabilities must do what no other
development, unlikely to change, and
as well. Implementing new models
families and children have to do: As
needing only support and supervision.
sometimes requires dismantling old
they grow, children with disabilities
models, which often evokes resistance,
must strive to reach a state of full
no matter how viable and desirable
adulthood, even as they continue to
the new idea is. Progress is always
be dependent on their families. At
may also have autism, mental health
too fast for those who do not embrace
the same time, families must learn to
problems such as depression, speaking
change and too slow for those who
liberate their children—to honor their
difficulties that not only affect their ability
are desperate for the benefits of new
right to self-determination—even as
to be understood but also betray the depth
approaches. But with the prodding and
they remain the primary support in
of their intelligence and understanding,
support of advocates, progress
their adult child’s life. Somehow, our
and heart defects that require fairly simple
will happen.
service systems have to help them
diagnosis is only useful to the extent
Even the diagnosis of Down Syndrome is far more complicated than we believed 20 years ago. People with Down Syndrome
but life-saving surgery. We have also
• Not only is our knowledge exploding,
through this process.
learned that as individuals with Down
so too is the competition for
Syndrome age, dementia may occur sooner
recognition and resources. As the
simple. Rather it is often a complex
than chronological age would predict.
general population ages, the needs
constellation of disabilities presenting
So, our paradigm of developmental
of the baby boomers are starting
multiple issues that require a synthesis
disability is being challenged. But I
to dominate the attention of state
of knowledge from a wide range of
sincerely hope that the challenge does not
long-term care systems. States are
health-care and disability domains.
10 Autism Advocate
• SECOND EDITION 2010
• A developmental disability is rarely
The Role of State Developmental Disability Systems [
individualized budgets under consumer
should be the essential purpose of state
developmental disabilities hinges on
control are examples of these approaches,
developmental disability service systems.
the understanding and commitment of
many of which are now widely adopted
Reference
The self-determination of people with
those who support them. In an effort to honor the right to self-determination and the promise of full inclusion in the community, state DD systems have invented new approaches for supporting
in mental health systems, aging systems
Prouty, R., Alba, K.M., & Lakin, K. (2008).
and even the Centers for Medicare and
Residential services for persons with
Medicaid Services. These strategies have
developmental disabilities: Status and trends
all risen from our deep commitment to
through 2007. Research and Training Center on Community Living, Institute on
people. Supported employment, positive
ensure that people do not just get services,
behavioral practices, self-determination,
but have a good life—the life they want.
of Education and Human Development,
person-centered practices and
Ultimately, improving quality of life is and
University of Minnesota.
Community Integrations/UCEDD, College
About the Author Nancy Thaler
Nancy Thaler is the Executive Director of the National Association of State Directors of Developmental Disability Services (NASDDDS; www.nasddds.org). She has a Master of Human Organization Science from Villanova University and an Honorary Ph.D. from Misericordia University. She previously served as the Deputy Secretary for Mental Retardation in Pennsylvania and the Director for Quality Improvement for the Centers for Medicare and Medicaid Services. She is the parent of an adult son with intellectual disabilities.
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Autism Advocate 11
spotlight ]
spotlight
What Really Matters Defining Personal Quality of Life
by James F. Gardner, Ph.D.
t
hroughout large sectors of American society, individuals and families are rethinking their personal dreams
and strategies. Families and adolescents exiting special education systems are demanding opportunities for real work at real wages where other people work. Older adults are trying to figure out a retirement plan that extends their life dreams and hopes. Survivors of chronic disease and major illness recognize that self- direction and personal control make futures happen. Architects and community planners are designing sustainable communities where people can age in place, walk or take public transit from home to work and gather in new public spaces. This quest for a personal and collective
i llu st r ati o n co u r t e s y o f i sto c k ph oto.com
future is changing traditional definitions
12 Autism Advocate
and expectations for quality of life. People now define quality in very personal terms. They are attaching greater urgency to quality. They are defining it as better results and outcomes for themselves rather than whether or not someone (such as a • SECOND EDITION 2010
professional, organization or elected official) quality of life and person-directed services.
and collective harm. In our complex,
We believe that all people can make
technological and fragile world, we expect
decisions and direct their own lives.
compliance with laws and regulations
fiscal restraint indicates the limitations
Today, CQL is guided in its progressive
that ensure our health, safety and welfare.
of continuing to pay for processes and
journey by our:
Airline crashes, food contamination and oil
“is working on it.” The debate over health-care reform and
procedures rather than results. Across
} Vision – A world of dignity,
the diverse fields of disability, mental
opportunity and community for all
health and aging, the demand for results is
people
replacing the demand for more procedures
} Mission – Provide leadership to
and services. Working harder or longer is
improve the quality of life for people
not necessarily an indicator of quality. We
with disabilities, people with mental
demonstrate quality not by the duration or
illness and older adults
intensity of services and supports, but rather
} Urgency – Everyone has a right to a life
spills are not acceptable. Health, education and social services are accountable for basic assurances. But beyond compliance with minimal standards, we want our services to meet our own individual expectations, whether it is our child’s teacher, restaurant staff, a medical procedure or an in-home personal assistant.
by facilitating outcomes for the person
of dignity, opportunity and community Public agencies and private organizations
receiving the services and supports, thereby
membership.
internalizing and personalizing quality.
} Work – Assist communities, systems
collect and analyze data and information on social indicators that tell us how well
and organizations to help people
our programs and services are performing.
discover and define their own quality
Social indicators on employment, income,
CQL (Council on Quality and Leadership) is
of life; measure personal quality of
air quality and crime provide information
an international, not-for-profit organization
life for individuals, organizations and
about a community where one might
dedicated to providing leadership for
systems; and improve quality of life
relocate. Indicators on staff turnover,
increased quality of life and community
for people with disabilities, people
student achievement, graduation rate and
membership for all people. The Autism
with mental illness and older adults—
teacher salaries provide information about
Society has been an active member of the
and the people, organizations and
the learning environment of your child’s
CQL Board of Directors since 1993, helping
communities that support them.
school. Although social indicators may
CQL and Quality
to shape our role as the leader in promoting quality in human services.
Making it Personal:
provide information about community norms for places, populations of people or
We began our work in 1969 by establishing
Assist People to Define Their Own Meaning of Quality
the first set of national standards in the
CQL recognizes the importance of
United States for residential services for
both regulatory compliance and social
In reality, social indicators and compliance
people with intellectual and developmental
indicators in health, education and social
measures are important in looking at
disabilities. Since then, we have broadened
services. Compliance with regulations,
organizational or community wellness.
our constituency to include people with
organizational procedures and professional
But neither one gives us any information
mental illness and older adults. At the same
codes promotes best practice and
on whether an individual’s or family’s
time, we have focused our work on personal minimizes waste, fraud, and personal
services, they cannot address individually defined quality of life.
dreams are acknowledged or realized. We SECOND EDITION 2010 •
Autism Advocate 13
spotlight ]
spotlight
do not know whether services and supports are truly addressing a person’s quality outcomes or if the health, education or social service provider is simply becoming more efficient at compliance or improving social indicators that have no connection
We have continually revised
with a family’s quality of life. A person’s preference may be to eventually reside in
and refined a scientifically
a community with lots of positive social
valid and reliable survey to
indicators, but those indicators will not
examine personally defined
provide any individual data or information about the person’s own quality of life.
quality of life.
Since the early 1990s, in order to move beyond compliance and social indicators, CQL has conducted a series of focus groups, meetings and dialogues with people with disabilities (including autism), individuals with mental illness and older adults. These listening sessions have identified 21 indicators, called Personal Outcome Measures®, which are most important to individuals and families, such as friends, health, work, respect, choosing where to live and being safe. Since that time, CQL
The Personal Outcome Measures® currently consist of the following items: My Self My World My Dreams
} People are connected to natural support networks. } People have intimate relationships. } People are safe. } People have the best possible health. } People exercise rights. } People are treated fairly. } People are free from abuse and neglect. } P eople experience continuity and security. } People decide when to share personal information.
14 Autism Advocate
• SECOND EDITION 2010
} People choose where and with whom they live. } People choose where they work. } People use their environments. } People live in integrated environments. } People interact with other members of the community. } People perform different social roles. } People choose services.
} People choose personal goals. } People realize personal goals. } People participate in the life of the community. } People have friends. } People are respected.
has conducted over 9,000 interviews with adults, families and children receiving
Choosing where to work, choosing where and with whom
services and supports. Our sample includes
to live, and choosing goals facilitates the attainment of many
people with severe intellectual disabilities,
other outcomes.
developmental disabilities, serious and persistent mental illness and autism, as well as older adults. We have continually
persistent mental illness, autism and those
individual interviews in the database,
revised and refined a scientifically valid
who communicate in non-typical ways.
CQL has used the data to validate and
and reliable survey to examine personally
Being Accountable:
refine its measurement system, identify
CQL has designed a scientifically valid
facilitating personal quality of life. For
and reliable measurement system that
example, our research indicates that:
defined quality of life. CQL’s interview protocol enables service and support systems and organizations, including families, community members and friends, to learn about an individual’s definition or meaning for each of these outcomes. These Personal Outcome Measures® are self-determined and self-defined. For example, definitions of personal outcomes, such as “People are respected” and “People participate in the life of the community,” will vary from person to person. Each reader of the Autism Advocate will have a unique definition of each of the Personal Outcome Measures® that fits their own life situation. CQL encourages service and support systems and organizations to learn how individuals receiving these services define the quality of life outcomes for themselves. This learning process uses multiple informants, always starting with the person and including others (family, friends, staff) who know the person best.
best practices and variables that promote Assist People, Families and Organizations personal quality of life outcomes, and to Measure Attainment of Their Own Meaning of Quality evaluate the effectiveness of services in
indicates whether the outcome—as defined by the individual or family—is present for the person. This measurement system provides an opportunity for the person, family and other supporters to identify the individualized meaning of the outcome, determine whether it is present for the person, and then establish the connection between services and the presence or absence of the outcome. In quick order, the measurement answers the following questions:
} Choosing where to work, choosing
where and with whom to live, and choosing goals facilitates the attainment of many other outcomes. } There is no trade-off in making life
choices and one’s health and safety. In fact, the best guarantee of health and safety is being connected to lots of friends and natural supports. } The outcomes least frequently reported
present were those that require diverse supports and services across program
} What is important to the person?
and agency boundaries—choosing where
} Is he or she getting what is important
to work, playing different social roles in
to him or her? } Is the program or service facilitating that
personal outcome? Or are people receiving services that are disconnected from their lives and personal quality of life?
the community and participating in the life of the community.
Making it Happen:
Assist People, Families and Organizations to Improve Personal Quality of Life
The interview and learning format has
Since 1993, CQL has maintained a
The Personal Outcome Measures® are
been used successfully with people with
national database on Personal Outcome
a powerful tool for evaluating personal
severe intellectual disabilities, serious and
Measure® attainment. With over 9,000
quality of life and the degree to which
SECOND EDITION 2010 •
Autism Advocate 15
spotlight ]
spotlight
Personal outcomes are important because they emphasize the importance of listening to and learning from the person.
difficulty bridging this connection between personal quality of life and person-centered services. Quite simply, the complex and multiple requirements for Medicaid documentation; data and information collection from local, state
organizations individualize supports to facilitate outcomes. Personal outcomes
What We’ve Learned:
are important because they emphasize the
The Importance of Person-Directed Services
importance of listening to and learning
In working with service systems,
from the person. The Personal Outcome Measures® interview and informationgathering protocol enable organizations to identify people’s priorities. Knowing about people’s priority outcomes directs planning efforts. Understanding individual definitions of quality results in individualization of the support process. This individualization of process reverses the traditional quality management
organizations, families and individuals, CQL has learned an important lesson over the decades. After analyzing the Personal Outcome Measures® database, we became convinced of the importance of choice and control in the attainment of personal quality of life. Our database analysis indicates the powerful influence of self-direction on personal quality of life. People who make choices about goals, supports they receive,
assumptions. If all people receiving services where they work, and where and with and supports defined their quality of life
whom they live have many more successful
outcomes in the same manner, and if all of
outcomes present in their lives than people
those same people learned and interacted
who do not make those choices.
with other people in the same way, then
In addition, many of these choices provide
perhaps organizations and systems would
opportunities beyond the confines of
standardize services around program
programs and services. Given the chance,
models. However, because people define
many people explore opportunities—goals,
their outcomes differently, the supports and supports, work, housing and friends—that services to facilitate the outcomes will vary. exist beyond the range of any single The services and supports that successfully
organization.
and federal agencies; and new methods for rate setting, billing and reimbursement are overwhelming service systems and individual providers, which is adversely impacting services. Since 2009, CQL has been engaged in the What Really Matters initiative. This program identifies person-centered services with the greatest impact on people’s quality of life. Through this initiative, we are: } Assisting organizations to promote
the discovery of each person’s quality of life outcomes, measure those outcomes over time and improve each person’s opportunity to achieve them. } Discovering and building on the
Personal Outcome Measures®, and promoting excellence in facilitating person-centered services.
What Organizations Can Do Service systems and organizations providing services and supports to adults and children with autism can use the Personal Outcome Measures® to learn
promote an outcome for one person may be
Unfortunately, our data and experience
about people’s priority outcomes, find out
a burden or imposition for another person.
indicate that organizations are having
if those priorities are being realized, and
16 Autism Advocate
• SECOND EDITION 2010
improve the relevance and effectiveness of
framework) for listening, planning and
organizational services. A focus on person-
doing what is best for the individual
centered services increases individual
} Expect more: Set expectations for any
choice, control and the achievement of
service relationship with a focus on
personal quality of life.
personal outcomes
Service systems and organizations can: } Keep it personal: Use Personal Outcome
Measures® as a benchmark (or
} Keep it real: Join with providers,
professionals, friends, advocates and community members in holding service systems accountable } Challenge us to do better: Share stores,
} Demand quality: Evaluate supports and
services in terms of critical indicators
experiences and insights to improve system services
for person-centered services
About the Author James Gardner, Ph.D., James Gardner, Ph.D., is the President and CEO of CQL | The Council on Quality and Leadership, which works with public and private organizations to improve the quality of services and supports to people with disabilities and mental illness. For more information, visit www.c-q-l.org.
The Premier West Coast Boarding School for Teens with ASPERGER’S DISORDER VILLAGE GLEN COMMONS combines The Help Group’s long-standing history of providing quality residential care and state-of-the-art education for youth with autism spectrum disorders.
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w w w. t h e h e l p g r o u p . o r g SECOND EDITION 2010 •
Autism Advocate 17
feature Employment and Health
Ph oto co u r t e s y o f R e d Wi g g le r Fa r m
Ph oto co u r t e s y o f r e d wi g g le r fa r m
]
Workers bring in the harvest at a community farm.
Employment and Health Are They Connected?
According to some, a key to success in America is
2010). Furthermore, according to a 2004 study assessing the mental health effects
working—being employed in a job and earning income.
of unemployment by J. Blake Turner and
Employment provides many opportunities to individuals,
R. Jay Turner, published in the journal of
including persons with disabilities. by Stephanie Birmingham
Rehabilitation Psychology, “Respondents with disabilities were nearly five times more likely to be involuntarily unemployed than their physically nondisabled
Unfortunately, citizens with disabilities
community counterparts” (Turner &
know all too well the grim unemployment
Turner, 2004; p. 243). Such data illustrates
statistics that face them. As of April 2010,
that the challenge of integrating individuals
the labor participation rate for individuals
with disabilities into the workforce still
with a disability was 22.2 percent compared exists. With this inequity, the pathway to a
18 Autism Advocate
• SECOND EDITION 2010
to 70.2 percent for individuals without a
normalized ideal of success becomes more
disability (U.S. Bureau of Labor Statistics,
and more difficult to reach, and may have a
Ph oto co u r t e s y o f r e d wi g g le r fa r m
Employment and Health
[
Past research has looked at the impact of one’s health on employment and has established a theory called the “healthy worker effect.” This is the idea that health impacts employment; the healthier an individual, the more likely he or she is to be working and employed (Ross & Mirowsky, 1995; p. 230). However, the supporting research and data that explains the connection of employment to improved health is just starting to emerge. Across various sectors of the labor force, including women and individuals with physical disabilities, researchers have demonstrated evidence of a positive link between employment and health; however, data has been limited in speaking specifically about the improved health effects of employment for individuals with autism. Even so, the evidence currently available that suggests employment does indeed improve one’s health can surely be used as a starting point to help support the idea that employment is good for everyone, regardless of disability.
Link Between Employment Status and Health A 2007 study assessing the impact of employment status and frequency of Workers bag harvest at community farm.
mental distress (FMD) (self-reported as
significantly negative impact on the lives of
of self and place in the world” (Turner &
the number of days within a 30-day period
individuals with disabilities.
Turner, 2004; pp. 241-242). Benefits of
that an individual’s mental health was
being employed extend beyond just earning
not good) among adults with disabilities
an income, to include greater self-esteem,
has established that the unadjusted rate
Benefits of Employment If employment is viewed as a huge component of being successful in America, we must ask: What exactly does being employed provide to an individual? First thought may lead us to the idea that
formation of self-purpose and the ability to interact with others. Surely, being employed can help individuals develop assets and a feeling of purpose, but is
of FMD was 18 percent for adults with disabilities who were employed compared to 40 percent among those who were unemployed. Additionally, “employed adults with disabilities were less likely than those
employment means economic advancement.
there more? Research tells us that the two
According to J. Turner and R. Turner,
domains explained by J. Turner and R.
inactive, current smokers, in fair/poor
“…stresses associated with job loss occur
Turner are not the only positive attributes of
health and uninsured.” These findings
predominantly in one of two domains. The
working. Is it possible that being employed
support “a strong association between
first of these is financial strain…the second
contributes to not only greater self-esteem
employment status and mental distress
domain involves the individual’s sense
but improved overall health?
who were not employed to be physically
SECOND EDITION 2010 •
Autism Advocate 19
]
Employment and Health
among community-dwelling adults with disabilities” (Okoro et al., 2007; p. 218). With regard to a specific category of disability, researchers J. Turner and R. Turner have looked at the impact of unemployment on the mental health of individuals with a physical disability. The results of their study are based on follow-up interviews of individuals with physical disabilities during 1985-1986. The results of their analysis reveal “a clear Ph oto co u r t e s y o f r e d wi g g le r fa r m
relationship between unemployment and depression, independent of disability status, and unemployment explained nearly 30 percent of the elevation in depression found within the physically disabled sample” (Turner & Turner, 2004; p. 247). Turner and Turner admittedly point out that this
Farm workers selling their produce.
finding is of marginal statistical significance; however, they do explain that there was undoubtedly an observational interaction effect “indicating that physical disability
Overall, according to Turner and Turner, unemployment has a negative effect on mental health, regardless of disability...
is associated with increased vulnerability to the effects of unemployment” (Turner
along with physical exams and routine
had “more symptoms of somatization,
& Turner, p. 247). Overall, according to
lab tests (Linn, Sandifer, & Stein, 1985; p.
depression, and anxiety after the experience
Turner and Turner, unemployment has a
503). In order to determine stress, the men
than those who continued to work” (Linn,
negative effect on mental health, regardless
had completed “a modified version of the
Sandifer, & Stein, p. 503). When looking
of disability, and that unemployment along
Holmes and Rahe Social Readjustment
with disability “constitutes a cumulative
at the physical functionality difference
Rating Scale, which identifies occurrence
and even synergistic adversity that is of
of any of 41 stressful events over the
profound mental health significance”
past six months” (Linn, Sandifer, &
(Turner & Turner, p. 247).
Stein, p. 503). For the purposes of this
Margaret W. Linn, Richard Sandifer
particular study, only results of stress
and Shayna Stein explained in their 1985
related to unemployment were taken into
paper, Effects of Unemployment on Mental
consideration. Men who specifically “lost
and Physical Health, the results of a 1979
their jobs as a result of being fired, laid off,
were unemployed compared to those who
study of veterans who were participants
or ‘dismissed’ (let go because of inadequate
were employed. Also, those men who were
in a Veterans Administration project in
performance but without the stigma of
unemployed were found to take twice as
Miami, Florida. The veterans involved
actually being fired) from work between one
much medication as those men who were
in the study were free from major illness
of the six-month follow-ups were identified”
employed. And, as one might guess, those
and between the ages of 35-60. As part
(Linn, Sandifer, & Stein, p. 503).
who made more visits to their doctor
of the study, every six months, the men’s
In terms of the impact of unemployment on
also reported having more symptoms of
stress and psychological, immunological
mental health, the study results revealed
somatization, anxiety and depression
and physiological statuses were reported,
that the men who had lost their jobs
(Linn, Sandifer, & Stein, p. 504).
20 Autism Advocate
• SECOND EDITION 2010
between those men who were employed and those who were unemployed, the researchers found that there were a high number of days in bed reported, a greater number of visits to the doctor and poorer self-rated health among those men who
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SECOND EDITION 2010 •
Autism Advocate 21
]
Employment and Health
In conclusion, researchers Linn, Sandifer
some sort of public-sponsored health
and Stein found that there was an adverse
insurance, the additional coverage that
impact on psychological function as a
may be provided by an employer may make
result of unemployment, with those men
a difference in an individual’s decision for
who were unemployed suffering from
seeking care for a condition that may not
anxiety, depression and concern with
seem life-threatening, but would otherwise
bodily symptoms. As the researchers
be harmful if left untreated in the long run.
note, because there were no differences in
References Bureau of Labor Statistics. (2010). Employment status of the civilian population by sex, age, and disability status, not seasonally adjusted. BLS.gov. Washington, DC: Department of Labor. Available at: http://tiny.cc/1xqau.
psychological states initially between both
The Right to Work for All
Frenk, J. (2009). Economic crisis challenges
groups, “it seems likely that these symptoms
Given the extended history of segregation
health security. PharmacoEconomics &
were associated with job loss rather than
from mainstream society that individuals
Outcomes News 570, 3. Academic Search
preexisting psychological symptoms”
with disabilities have faced, combined with
Complete. EBSCO.
(Linn, Sandifer, & Stein, p. 504).
evidence that employment is beneficial
Effects of Inadequate Health Insurance A somewhat indirect impact that unemployment may have on health is the loss of employer-sponsored health insurance. “Employment bundles a variety of health-enhancing resources, including income, insurance, and social support” (Schnittker, 2007; p. 223). Dr. Julio Frenk, from the Harvard School
Linn, M.W., Sandifer, R., & Stein, S. (1985). overall, there is no greater time than now to Effects of unemployment on mental and improve efforts at integrated employment. physical health. American Journal of Public Individuals with disabilities deserve the very same opportunities at having a job and earning a living wage as any other person. Denying individuals with disabilities the right to work not only excludes them from an important segment of American society—the workplace—but also leads to decreased physical and mental health.
of Public Health, explains “employment
Greater attention must be paid to the
loss leads to an increase in the number of
potentially devastating long-term effects
uninsured people and increased health
of unemployment. If the United States as a
expenditures, further compounding income nation is to lead and serve as an example to the rest of the world, we must be prepared loss. Similarly, many families will reduce
Health, 75, 502-506. SocINDEX. EBSCO. Okoro, C., Strine, T., McGuire, L., Balluz, L., & Mokdad, A. (2007). Employment status and frequent mental distress among adults with disabilities. Occupational Medicine, 57, 217-220. PsychINFO. EBSCO. Ross, C.E., & Mirowsky, J. (1995). Does employment affect health? Journal of Health and Social Behavior, 36, 230-245. SocINDEX. EBSCO. Schnittker, J. (2007). Working more and feeling better: Women’s health,
their use of discretionary health services,
to include every member of our society.
employment and family life, 1974-2004.
such as preventative care, which further
Employment is a win-win strategy for
American Sociological Review, 72, 221-238.
degenerates health status and reduces the
everyone; individuals become healthier
SocINDEX. EBSCO.
capacity of people to work and generate
beings through work and the U.S. economy
Turner, J.B., & Turner, R.J. (2004). Physical
income” (Frenk, 2009; p. 3). Of course, this
grows stronger. Yet, let us not forget
disability, unemployment, and mental
is an unfortunate cycle and, while many
that part of this strategy must include
health. Rehabilitation Psychology, 49,
individuals with disabilities do receive
individuals with disabilities.
241-249. SocINDEX. EBSCO.
About the Author Stephanie Birmingham Stephanie Birmingham is a Public Policy Associate with APSE, a national nonprofit organization dedicated to advancing integrated employment and career advancement opportunities for citizens with disabilities. Stephanie has a bachelor’s degree in political science and her passion for ensuring equitable opportunities for citizens with disabilities is influenced by her experience as a wheelchair user. 22 Autism Advocate
• SECOND EDITION 2010
feature Working Parents [
When Parents are Employed
Ph oto co u r t e s y o f Ph oto d i s c
Planning for Increased Flexibility and Improving Quality of Life Becoming a parent is a major transition in adulthood. When any new parent takes on responsibilities connected with caring for a child, adjustments must be made.
by Eileen M. Brennan, Ph.D., Julie M. Rosenzweig, Ph.D., LCSW, and Lisa A. Lieberman, MSW, LCSW
With so many parents in the U.S. employed outside their homes, the transition to parenthood also involves modifying their
guess that I am a naturally born optimist,
children. Parents typically must take
and I try to take time every day to do things
care of them for longer periods in their
that are as [low stress] as possible and
development and deal with crises that can
pleasurable for me. I enjoy using mental
interrupt work or other life responsibilities.
challenges to improve things in life or in my A mother reflected on the stress and business, whether it be writing a computer
conflict between her exceptional caregiving
program that automates a work process
responsibilities for her son and her work
our research team has investigated the
or thinking a process through.” Although
obligations: “Did I remember to go every
barriers faced by parents raising children
having a vital work life is essential for
place I was supposed to go, make all the
with disabilities in their efforts to integrate
the well-being of many parents, the
phone calls, get to work and do my work?
work and family life, as well as strategies
responsibilities of exceptional caregiving
What if he gets worse? What’s going to
they pursued to find a workable solution
can be draining in the way they compete
happen when he’s in high school? What’s
that improves the family’s quality of life
with work responsibilities.
going to happen when he’s an adult?”
(Rosenzweig & Brennan, 2008).
Giving exceptional care to children with
How do parents manage to find and
Parents of children with disabilities have
autism spectrum differences (ASD)
maintain employment that helps them
told us that work is a key source of positive
requires intense involvement to ensure
contribute to their communities and meet
experiences for them. One father stated, “I
the health, safety and education of those
family needs, while caring for children in a
work lives to arrange care for children during the work day. Over the past 16 years,
SECOND EDITION 2010 •
Autism Advocate 23
]
Working Parents
unique profile of a child with ASD, while joining in a collaborative partnership with the child and parents to create a win-win situation for all involved. “When a child is cared for at home, the environment can be set up and maintained to accommodate the child’s unique needs to a much greater extent than the best-staffed and bestequipped out-of-home care situations… Also, if a child has a strong need for a calmer environment, being at home can prevent sensory overstimulation.” Ph oto co u r t e s y o f Ph oto d i s c
(Lieberman, 2005, p.10) Most working parents experience the difficulty of getting everyone ready in the morning and out the door on time. “When you add in the unique sensory and organizational challenges faced by a child
For some parents with work schedules outside the hours of traditional child care, the flexibility of in-home care is ideal.
with ASD, the problem is compounded.” (Lieberman, p.16) A family with two children (one with autism and the other with a bi-polar disorder) where both parents work outside the home tentatively chose to hire an in-home provider, just for
world where child care and education
to leave child-care arrangements due to
the mornings. Both parents were pleasantly
are geared to children with typical
their emotional, behavioral or sensory
surprised to discover what a difference it
development? Child care researcher Arthur
challenges. Assisting child-care providers
made to start their day with quality support.
Emlen (2010) has argued that all parents
through inclusion consultation is one
Eventually, they expanded in-home care
raising children and youth need to find
strategy used to support children with
to cover after-school hours. The mom
an optimal flexibility solution: the unique
ASD in child-care settings; however, these
combination of child-care arrangements,
services are not yet widespread. For some
care within the family and employment
parents with work schedules outside
situations that work for their family. Emlen
the hours of traditional child care, the
likens the process to solving a complicated
flexibility of in-home care is ideal.
puzzle with three central pieces: child care,
reported, “Having [in-home care] is a source of support that has become essential to my family’s mental health. It is ‘life support’ for the soul.” (Lieberman, p.14)
Planning Flexibility in Family Care Finding and maintaining quality child care
family and work. We will consider each
In-Home Care
piece separately and then talk about the
Hiring someone qualified to provide
solution that ties them all together.
in-home care for a child with ASD requires
children themselves during working hours,
an investment of time and thoughtful
Finding Flexible Child Care
using non-overlapping shifts (sometimes
planning. When done effectively, the
termed “tag-team” parenting), have siblings
Inclusion in child-care and out-of-school
effort is well worth the return in terms of
care for each other or leave the child or
care programs is crucial for working
supporting work flexibility, not to mention
youth in self-care. Some parents told us they
families raising children with developmental
peace of mind for working parents. An
work from home while supervising their
difficulties, but many children are asked
individual provider tailors efforts to the
children or take their children to work with
24 Autism Advocate
• SECOND EDITION 2010
may prove too great a challenge for some families. Some may instead opt to care for
Working Parents [
on the spectrum need flexibility in all domains of their life, but definitely at work. One way to achieve flexible work arrangements is to negotiate with supervisors or human resource professionals. Disclosure of their family situation at work may trigger courtesy stigmatization, defined as discrimination and exclusion due to their care responsibilities for a child who has a health concern or disability (Rosenzweig Ph oto co u r t e s y o f i sto c k ph oto.com
& Brennan, 2008). In other words, parents are often unfairly blamed, at least in part, for causing their children’s problems due to poor parenting practices. Parents, especially mothers, also face the implicit social bias that if your child has a disability, you should be at home full time, not in the workforce. them. One mother worked things out with
whose pre-teen son is on the spectrum, told
her employer to care for her children with
us the following after her recent graduation
behavioral challenges while completing
from college: “I could have worked for a
In separate focus groups of parents and human resource staff, we explored the interplay between disclosure,
daytime like most people do, I will work [at
stigmatization and the granting of flexible large international company in international work arrangements. sales because I know different foreign
night] and do the things that I …absolutely
languages, and I unfortunately had to reject
What Parents Said
have to do to keep my deadlines; anything
this opportunity. I would have accepted
Parents had to decide what, when and whom
else I can put aside, I do when they are asleep
the job if I did not have a disabled child…
to tell. Some opted to “tell all” at initial
or in the early morning.”
[Instead] I would simply look for a flexible,
job interviews to be sure that, if hired,
Working parents may also choose family-
convenient job which would accommodate
employers would be open to flexible work
based care in order to uphold customs and/
my hours so that I could only work when
arrangements. Others waited to disclose
or beliefs that are unique to that family’s
my son was in school, and I would have the
their child’s condition until after they had
own culture (e.g., ethnic or religious values
opportunity to come and go. So, a flexible
established themselves as valued workers,
and practices). They may simply hold a
schedule was the main issue.”
or until a crisis developed. Parents
assignments: “Instead of working in the
fundamental core belief that “only family takes care of family,” thus utilizing the family-care strategies mentioned previously.
Common flexible work arrangements involve flextime, compressed work weeks, telecommuting, telework, part-time
sometimes told co-workers and supervisors about their family-based needs in order to arrange for coverage in a crisis. When seeking formal accommodations, their
Negotiating for Flexible Work Arrangements
work schedules and job sharing. We have
Given the lack of community supports and
resource professionals and found that even
the stress of arranging care or caring for
though there are some formal policies
What HR Professionals Said
their children themselves while they work,
allowing flexible work arrangements in
HR professionals were more likely to grant
the flexibility solution for working parents
most companies, few businesses have more
flexibility if the organization was “family
of children with ASD often involves making
than half of their employees actually using
friendly,” the position held by the parent
conducted an extensive survey of human
adjustments in work arrangements. A mother, them. Employed parents who have children
situations were disclosed to human resource (HR) professionals.
would allow flexibility, the employee was SECOND EDITION 2010 •
Autism Advocate 25
]
Working Parents
valued and had a solid work history, and
child-care subsidies for families who have
quality of life. He told us, “…I guess our
they believed in the business case for
children with disabilities.
theory is if …you go on an airline, they say
flexible work arrangements. HR staff also expressed their need to know how to talk with employees about these sensitive and emotionally charged issues, and their lack of training about disability care issues.
Negotiation Strategies that Work The success of a negotiated flexible work arrangement is based, not just on policy, but on a relationship. The negotiation, typically between parent and supervisor or parent and coworker, concludes with an agreement that is mutually beneficial to both parties.
Employers also need to raise awareness among their HR staff and supervisors about employees facing exceptional care responsibilities. Employers can make flexible work arrangements accessible and provide meaningful benefits packages. Organizations and corporations, such as KPMG, McGraw-Hill, Ernst & Young and Massachusetts General Hospital, are leading the way by offering disability awareness training to their employees, fostering support programs for families of
when the oxygen mask comes down, the first thing you do is you put your own on, and then your kids’… So we’re under the belief that if we are going to be the best, if we’re really interested in our son’s wellbeing, our best bet is to make sure that we’re mentally OK and physically OK as best we can, so that we can take care of our son. I tell you, it sounds good on paper, but, damn, it is hard.”
References Council of Economic Advisors. (2010).
children with disabilities and becoming
Work-life balance and the economics of
employers of choice by providing flexible
workplace flexibility. Washington, DC:
“giving back 150 percent” in exchange
work arrangements.
Executive Office of the President. Available
for flexibility. And as noted by a family-
Last March, the Council of Economic
at: http://tiny.cc/gypdq.
friendly supervisor, “When you work with
Advisors (2010) released a comprehensive
Emlen, A.C. (2010). Solving the childcare
employees, they work back; you develop a
report establishing the cost-effectiveness
and flexibility puzzle: How working parents
Parents of children with disabilities who make use of this strategy often talk about
bond. I’m able to say, ‘I really need you to do of workplace flexibility for American
make the best feasible choices and what that
this today.’ I find they cooperate more with
corporations and the benefit of flexibility
means for public policy. Boca Raton, Fla.:
meeting my emergency when I work with
for families with employed parents.
Universal Press.
them when they are having theirs.”
Although the report did not mention the
Lieberman, L. (2005). A “stranger”
situation of parents raising children with
among us: Hiring in-home support for a
disabilities, increased access to flexibility in
child with autism spectrum disorders or
workplaces can be of special assistance to
other neurological differences. Shawnee
those parents with exceptional caregiving
Mission, Kan.: Autism Asperger Publishing
responsibilities who are striving to improve
Company.
Advocating for Improved Flexibility and Increased Quality of Life Inclusive child care is an essential family support that makes economic sense since it often provides the consistent care
the quality of life for their families.
Rosenzweig, J.M., & Brennan, E.M. (2008).
arrangements necessary for parents to
A father raising a young son with ASD
Work, life, and the mental health system of
remain employed. It is time to join with
told us that he and his wife had worked
care: A guide for professionals supporting
those who are advocating for improvements out a satisfactory flexible arrangement of
families of children with emotional or
in training and support for child-care
workplace involvement and family care that behavioral disorders. Baltimore: Paul H.
providers, and increased access to
helped their family attain a satisfactory
Brookes Publishing.
About the Authors Eileen Brennan, Ph.D., Julie Rosenzweig, Ph.D., and Lisa Lieberman, MSW, LCSW Eileen Brennan, Ph.D., and Julie Rosenzweig, Ph.D., LCSW, are professors of social work at Portland State University and researchers at the Pathways to Positive Futures Research and Training Center funded through NIDRR grant H133B990025. For more information, see http://tiny.cc/xexzv. Lisa Ackerson Lieberman, MSW, LCSW, is a national speaker who specializes in “living with disability in the family,” and the mother of Jordan, a young adult with autism. For more information, visit www.disabilityinthefamily.com/. 26 Autism Advocate
• SECOND EDITION 2010
Eden Outreach Eden Outreach is a division of Eden Autism Services
Consultative Services
Eden’s highly trained professional staff provides consultative services including program development, program implementation, case management, program evaluation and expert testimony.
Diagnostic and Evaluative Services
Eden Outreach offers diagnostic evaluations, speech & language evaluations, augmentative/alternative communication evaluations, learning evaluations, comprehensive skill evaluations, full child study team evaluations, functional behavior assessments.
Training for parents and professionals
Training is available for professionals and parents interested in learning about autism and applied behavior analysis (ABA). Workshops encompass a wide range of topics and techniques including designing, implementing and assessing remedial programs for individuals with autism. Trainings are led by Eden faculty who has significant experience with the material presented. (CEU and BCBA credit training is available.)
Eden Curriculum
The newly revised Eden Curriculum is available for purchase online at www.edenoutreach.org. The Curriculum consists of a 5-volume School Series; Infant & Toddler volume; Adult Employment and Residential volumes.
Online Training
Eden Outreach has launched its online training Webinar Workshop Platform (powered by WebEx). Experience all the benefits of this highly educational event from the convenience of your own home or office. Please visit www.edentraining.org. (CEU and BCBA credit training is available.)
To find out how Eden Outreach can help you visit www.edenoutreach.org or call (609) 426-8656.
Dedicated to improving the lives of individuals with autism and their families since 1975. www.edenautismservices.org
SECOND EDITION 2010 •
Autism Advocate 27
feature ]
Recreation
L e is u r e t im e is fr e e , u nocc u pi e d t im e d u rin g w h ic h mos t of u s may in d u l g e in r e cr e at ion t o for g e t som e of t h e pr e ss u r e s of e v e r y d ay s t r e ss b y u nwin d in g an d r e fr e s h in g o u r
Ph oto co u r t e s y o f i sto c k ph oto.com
min d s an d bo d i e s .
it is sometimes difficult for individuals with autism spectrum disorder (ASD) to develop recreational skills and interests, and participate in social activities. Studies on adulthood transition have found that
The Importance of Recreational Pursuits Running Beyond Expectations and Labels
28 Autism Advocate
• SECOND EDITION 2010
many adults with autism end up socially isolated (Baker, 2006). In another study, Orsmond, Krauss, and Seltzer (2004) found that parents of children with ASD report that only 35 percent participate in group recreational activities. Because individuals with ASD tend to have a limited repertoire
By L. Lynn Stansberry Brusnahan, Ph.D.
of leisure activities they choose to engage
Not only do we enjoy recreational
in, it is important for parents and educators
activities, they serve to renew our health
to encourage individuals with autism to
and, in some cases, help us stay physically
participate in recreational activities. This
fit. Recreation and extracurricular
article highlights two high school students
involvement are essential for developing
with autism and their participation on their
friendships, increasing the likelihood of
high school cross country teams. In both
community integration and contributing
of these cases, their high school coaches
to post-school success. What we do with
provided opportunities that allowed these
our leisure time can actually improve
young men to enhance their social lives and
the overall quality of our life and well-
to participate in an activity that promotes
being. Due to socialization challenges,
health and well-being.
Recreation [
car astonished as Collin ran off after the team in his street clothes. Being on the team gave Collin a social function to attend every Friday night as the group would get together for pasta dinners. During those gatherings, each member stated their personal goals. Usually Collin was quiet, but one day he spoke up with a goal to “stay on the dotted line.” Then later that season, Collin had another goal: “to keep his laces tied.” One of the team leaders said he was inspired by Collin who simply wanted to keep his shoelaces from coming undone and not accidentally stray off the course. That same season, Collin’s goals became Ph otos co u r t e s y o f ly n n sta n s b e r ry b ru s n a h n a n
competition-oriented when he said his goal was to “pass everyone in front of him.” Collin had become aware of his abilities and showed an interest in his personal time, setting a goal to run the 5,000-meter course quicker than 24 minutes. At the next meet, with his coach shouting encouragement during the final yards, Collin met his Collin resting, stretching, running and with his state championship team.
goal. His teammates gathered around and offered their congratulations. He was uncomfortable with the attention, but he
...to the surprise of the coach and his parents, Collin showed up not to hand out water bottles, but to run.
did crack a smile. His team felt what Collin did was the most impressive thing that had happened at that meet where 13 personal records had been set. Every week the team
Collin’s Story
thought Collin could help manage the
Collin Brusnahan’s parents worried about
team, but to the surprise of the coach and
his move from middle school to high school. his parents, Collin showed up not to hand Coach Dominic Newman helped ease those out water bottles, but to run. Collin gained
gives out a high school team jersey with “No. 1” on it to the runner who gave the best effort the previous week. The Monday after Collin met his goal, he received that jersey. Four years later, Collin received the “most
concerns. The summer before his freshmen
the respect and acceptance of the team as
year, Collin Brusnahan was asked by his
he did his best to stay with them during
physical education teacher if he would
runs and never quit when he was tired. So,
like to join the high school cross country
he received a uniform and became part of
team. His parents expressed doubt that
the team. One day Collin missed practice
Andrew’s Story
Collin would be interested in running, but
because of an appointment. He and his
Sixth grade was pretty hard for Andrew
Coach Newman urged them to allow their
mother saw the team running on their way
Gerdts because he was teased and didn’t
son to participate as this would provide
home. Collin, who is a man of little words,
have any friends. But things changed in
Collin with an opportunity to interact
said “Pull over, mom,” and started getting
seventh grade when he began running.
with his peers. Coach Newman originally
out of the car. His mother just sat in the
The first time Andrew ran, he finished in
improved” award from a team that won their division state championship three out of four years.
SECOND EDITION 2010 •
Autism Advocate 29
]
Recreation
involvement. They have given both of these individuals a love for a sport that provides
...what running has provided for Andrew is something much more meaningful—friendship and acceptance.
them rich leisure time, physical fitness and social engagement and acceptance. They have allowed these young men to run beyond expectations and labels.
References Baker, J. (2006). Preparing for life: The
the middle of the pack. But it didn’t matter
of him. Andrew raced near the front with
where he finished because, for the first
teammates cheering him on and finished
time in his life, he was part of something.
11th out of 160 runners. Andrew’s proud
His parents sat in the bleachers filled
mother said she always expected big things
with emotion after seeing all of Andrew’s
from her son, but admitted that this was so
teammates congratulating him. His coach
much more than she ever thought he would
Heinks, J. (2008). Andrew’s story:
felt that moment was the first time Andrew
achieve. Some people might call Andrew
One boy’s journey back from autism.
had experienced social acceptance. In
Gerdts “autistic,” but a better label for him
PublishAmerica. For more information
his freshman year, Andrew qualified
would be “All-State.” Even more important
about the book or to contact the author,
for the state cross country meet. As a
than a title, what running has provided
visit www.julieheinks.com.
sophomore, Andrew finished first in both
for Andrew is something much more
Hupper, B. (2009). Land of 10,000 stories:
meaningful—friendship and acceptance.
Star runner battles autism one step at a
These two stories illustrate the importance
time. Minneapolis, MN: KARE 11 News.
his conference and section, and ran to an 11th-place finish at the state cross country meet. Andrew became well known at his cross country meets because after he
of providing recreational opportunities
complete guide for transitioning to adulthood for those with Autism and Asperger’s syndrome. Arlington, Texas: Future Horizons, Inc.
Available at: www.kare11.com/news/ investigative/extras/extra_article.
finishes running his race, he stands near
to individuals with autism. Running has
the finish line welcoming every runner
provided both of these young men more
who finishes behind him and offering
than health and well-being; it has afforded
Orsmond, G. , Krauss, M., & Seltzer, M.
words of encouragement. For a long time,
them opportunities for socialization and
(2004). Peer relationships and social and
he was the only runner doing this, but
friendship. Their lives have been enhanced
recreational activities among adolescents
then other kids started joining in. Andrew
by their participation in running. These
and adults with autism. Journal of
became everyone’s buddy. When he was
two individuals experienced positive
Autism and Developmental Disorders,
a junior, he qualified for the state cross
changes in their lives because two
34(3): 245-256.
country meet for the third straight time.
remarkable coaches looked beyond their
Witrado, A. (2007). Autistic runner stays
His coach, Jeff Christ, told Andrew before
challenges and provided these young men
on course. Milwaukee Journal. Available
the race that, no matter what, he was proud
with an opportunity for extracurricular
at: http://tiny.cc/01oio.
aspx?storyid=828550&catid=26.
About the Author L. Lynn Stansberry-Brusnahan , Ph.D. L. Lynn Stansberry-Brusnahan, Ph.D. is the parent of a young adult with autism. She received her Ph.D. from the University of Wisconsin-Milwaukee, where she specialized in Exceptional Education. As an Assistant Professor at the University of St. Thomas in Minnesota, she coordinates an Autism Spectrum Disorders graduate certificate and master’s program. Lynn is on the board of the Autism Society, Autism Society of Wisconsin and Autism Society of Southeastern Wisconsin. 30 Autism Advocate
• SECOND EDITION 2010
Pure, Organic, Peeled Pears. Nothing else. GoGo Juice products are made just like you would at home. We don't add sugar, coloring, preservatives, or other chemicals. We pick the best organic fruit, peel it to reduce any risk of unwanted chemicals, juice it and lter the result. GoGo's products are (and always will be) suitable for people on special diets such as Gluten Free /Casein Free, Speciic Carbohydrate Diets, and many others. Learn more or order at: ww www.GoGoJuice.com Oxalate (Low) GFCF (Legal) Salicylate (Low) Sugars (12g)
SECOND EDITION 2010 •
Autism Advocate 31
feature ]
Health and Wellness for Adults
O b e si t y, d iab e t e s an d h i g h b loo d pr e ss u r e aff ec t ag in g A m e rican a d u lt s at a l armin g rat e s . By Linda Walder Fiddle, Esq.
Not surprisingly, adults with developmental challenges, such as autism spectrum disorder (ASD), are even more at risk for these diseases because they often lead sedentary lives, take medications that increase weight gain and do not often have access to recreational exercise. In
Quality of Life = Fitness + Fun
communities throughout the United States, baseball, bowling, basketball and soccer programs for children with ASD are thriving. Recreational activities that promote fitness, such as horseback riding,
The Daniel Jordan Fiddle Foundation Addresses Health and Wellness for Adults on the Spectrum
swimming, yoga, rock climbing and even ice hockey, are creating wonderful opportunities for children on the autism spectrum to stay fit and socialize. For adults with ASD, however, the fitness ball has
Caption here
32 Autism Advocate
• SECOND EDITION 2010
been dropped. The Daniel Jordan Fiddle
Tasks Galore books incorporate structure, routines, and socialcommunication to create multi-modal tasks which make learning fun and meaningful. Books are available for all age and skill levels. Tasks Galore donates partial proceeds to organizations that provide services for people with autism spectrum disorders and their families.
www.tasksgalore.com
SECOND EDITION 2010 •
Autism Advocate 33
]
Health and Wellness for Adults
“...providing exercise and recreational programs to improve the health and wellness of adults on the spectrum has always been a concentration for us...”
Fitness Trail was rededicated in May 2010 and represents a unique, collaborative effort in developing and implementing a multifaceted outdoor fitness venue.
FIT Together at the YMCA Program Another DJF collaborative effort is a program called FIT (Fitness Independence Training) Together at the YMCA that was piloted in the summer of 2009 at the Ridgewood, New Jersey, YMCA. This eight-week fitness/recreation program was run with the supervision of teachers from Alpine Learning Group’s adolescent and adult school program and the Ridgewood YMCA staff, and included one-on-one peer mentors for the six young adult participants with ASD. The participants and their peer Ph oto co u r t e s y o f li n da fi d d le
mentors met twice per week for four-hour sessions that included aerobics, yoga and free swim periods as well as socialization time. Data was collected on the two female and four male participants to assess their fitness levels, independence and skill levels in the beginning of the program and at the end of the program.
Enjoying DJF’s habitat trail
(DJF) Foundation has picked up that ball
these activities improve the quality of life
In Phoenix, Arizona, the Southwest
and is running with it.
for all adults in our society.”
Autism Research & Resource Center
“We focus on collaboratively developing
(SARRC; www.autismcenter.org) piloted
Habitat Fitness Trail
a parallel program, and the results from
One of the first programs for adults that
both programs have been shared with
The Daniel Jordan Fiddle Foundation
the national YMCA so that other YMCAs
developed was the building of a wildlife
around the United States can use these as
habitat trail by members of Fountain
these innovative programs to create
a blueprint to develop their own fitness/
House, Inc., an organization that provides
opportunities for adults.” Rich Bushnell,
recreation programs for adults on the
support and services for adults affected
spectrum. Both programs are continuing
board member and DJF’s Grants
by bi-polar disorder and other mental
and expanding to include more fitness
Management Chair, has helped develop
illnesses, and Boy Scouts with ASD
opportunities that improve overall physical
several of the foundation’s camping and
seeking to get their Eagle Scout rank. In
health, social skills and self-esteem through
recreational programs, and adds that
2009, the trail was refurbished to include
exercise and recreational activities. As
“providing exercise and recreational
exercise stations that enable visitors
an added benefit, the fitness of the peer
programs to improve the health and
to get additional benefits to hiking the
mentors also improved and family members
wellness of adults on the spectrum has
trail with targeted fitness activities. The
of the participants could partake of their
always been a concentration for us because
Daniel Jordan Fiddle Wildlife Habitat and
own fitness activities at the YMCA.
programs that enhance all aspects of adult life,” says Vicki Ofmani, Program Development Chair on the DJF Foundation Board of Trustees. “And then we fund
34 Autism Advocate
• SECOND EDITION 2010
Health and Wellness for Adults [
a study to determine what interventions would affect the health and wellness of adults on the autism spectrum,” said Chapel Haven President Betsey Parlato. “No entity has as yet studied this important component of supporting the ASD adult population. When completed, the outcomes of ‘The Daniel Jordan Fiddle Foundation Health and Wellness Program at Chapel Haven’ could have a major impact on the industry that serves adults on the spectrum.” “An important goal of all of our fitness programs for adults is for the participants to do something they enjoy and have fun doing it,” says Ofmani. “ This is where the Ph oto co u r t e s y o f li n da fi d d le
wellness component comes in and this is what adds to the quality of a person’s life,” adds Bushnell. DJF programs during the past eight years have enabled this element of choice for adults; programs from horseback riding to bowling to family
Having fun at FIT Together
camping weekends have been part of our
Health and Wellness Model Program at Chapel Haven
research project that will examine aspects
In 2010, The Daniel Jordan Fiddle
of individuals on the spectrum. Primary
The foundation’s holistic approach that
Foundation Signature Programs were
areas of focus will be decrease in anxiety,
honors the individuality of all people
launched throughout the United States.
increase in self-esteem, attainment of
affected by ASD is based on the belief that
These are collaborative partnerships
a healthy weight, independent healthy
every person deserves the opportunity
designed to develop, implement and
food choices, and independent choices of
for a home, a good job and a healthy life.
promulgate model programs that can be
exercise and activity.
“Through collaborative partnerships, the
replicated in communities everywhere.
The Daniel Jordan Fiddle Foundation
DJF formula is working to provide new
The Daniel Jordan Fiddle Foundation Health
is committed to fostering the ongoing
and innovative ways for adults with ASD to
and Wellness Program at Chapel Haven, a
development of this program. “In the true
stay fit throughout their lives in ways that
renowned program for adults with ASD
style of venture philanthropy, The Daniel
keep them inspired,” Ofmani says, “and
located in New Haven, Connecticut, and
Jordan Fiddle Foundation approached us
hopefully this will lead to the creation of
Tucson, Arizona, is a comprehensive
with the innovative idea of conducting
more opportunities to do so,” she adds.
that might affect the health and wellness
adult program portfolio.
About the Author Linda Walder Fiddle, Esq. Linda Walder Fiddle, Esq., is the founder and Executive Director of The Daniel Jordan Fiddle Foundation, a national autism organization focused on adults. The volunteer-run organization develops, advocates for and funds innovative programs throughout the U.S. that address all aspects of adult life. Ms. Walder Fiddle has been recognized by numerous organizations and national and state legislators for her efforts in changing the face of autism to include adults. For more information, visit www.djfiddlefoundation.org.
SECOND EDITION 2010 •
Autism Advocate 35
feature ]
FAMILY FOCUS PROCESS
A Model of Positive Behavior Support for Individuals with Autism and Their Families The Family Focus Process W e h av e com e a l on g way in t h e pro v ision of in d i v i d u a l i z e d in t e r v e n t ions for p e op l e wi t h a u t ism sp e c t r u m d isor d e rs ( A S D) .
36 Autism Advocate
• SECOND EDITION 2010
By Barbara Becker-Cottrill, Ed.D.
impact on the quality of life of families is
We understand more about learning
not well understood. Through some new
styles and have developed many effective
research, we are beginning to understand
best practices to teach critical skills. But
and quantify some of the identified needs
when someone asks, “How should we
of families living with ASD. Health and
be serving families with children with
well-being are at the center of those needs.
ASDs?,” the answers are not clear. We
One study that has illuminated the
do know that living with a child with an
concerns and challenges families face is
ASD is complex and challenging, yet the
the Easter Seals Living with Autism Study
Ph oto co u r t e s y o f WV ATC
Brothers share a bonding moment.
Effective Communication Solutions from AAPC Countless studies have shown that differences in communication skills are a core characteristic of individuals with autism spectrum disorders. While most go on to be fully verbal, others with more severe, classical, autism remain nonverbal or have significantly limited communication skills. The Autism Asperger Publishing Company offers essential resources for parents, teachers, speech-language pathologists and others who work to cultivate communication skills in individuals on the autism spectrum, whether they are diagnosed with high-functioning or classical autism. Our practical information can easily be included in home or classroom activities and tailored to fit the needs of any child.
Initiations and Interactions: Early Intervention Techniques for Parents of Children with Autism Spectrum Disorders By Teresa A. Cardon, M.A., CCC-SLP Code 9970 Price: $19.95
The Classroom and Communication Skills Program: Practical Strategies for Educating Young Children with Autism Spectrum and Other Developmental Disabilities in the Public School Setting By Megan Ahlers, M.S., & Colleen Hannigan Zillich, M.S., CCC-SLP Code 9008 Price: $19.95
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 Code 9005 Price: $21.95
Autism Asperger Publishing Company www.asperger.net • 877-277-8254 (phone) • 913-681-9473 (fax)
SECOND EDITION 2010 •
Autism Advocate 37
]
FAMILY FOCUS PROCESS
Ph oto co u r t e s y o f WV ATC
Our intervention programs are typically focused on the child; however, we need to be paying attention to the whole family.
A budding photographer at work.
(2008). In this study, 1,652 parents of
services to families and their children
clear that this was not an effective way
children age 30 and under who had autism
with ASDs. Our intervention programs are
to go about fulfilling our mission. Many
and 917 parents with typically developing
typically focused on the child; however, we
parents were living stressful lives and,
children in the same age range completed
need to be paying attention to the whole
while well intentioned, they could not
an online survey about daily life with
family. The following model, described
keep up. In 1991, the staff received training
autism. The key findings indicated that,
below, is one example of a service delivery
in Positive Behavior Support (PBS), an
overall, parents of children with autism
model that seeks to address family
empirically validated, function-based
expressed significantly greater concern
concerns, and family and child quality
approach to eliminate an individual’s
about their child’s future compared to
of life.
challenging behaviors and replace them
parents of typically developing children,
with prosocial skills. It was clear that
particularly in the areas of independence,
The FFPBS Service Model
we needed a major shift in the way we
quality of life, health, employment, housing
The Family Focus Positive Behavior
approached our mission. We shifted from
and education. While this may come as
Support (FFPBS) process is the main
a consultant/expert prescription model
no surprise, it is a fact that must be taken
direct service offered by the West Virginia
to a model of team facilitation. Using the
seriously by service providers. One parent
Autism Training Center (WV ATC) at
main tenets of PBS, we implemented a
in the study wrote, “Help us find a way to
Marshall University. It is designed to
comprehensive service delivery model
help him. We can’t do it ourselves.”
provide intensive and comprehensive
called Family Focus Positive Behavior
Another study on burden and health-
services to individuals with ASDs of all
Support.
related quality of life (HRQOL) among
ages, with a focus on addressing family
The process begins with family-centered
caregivers of children with ASDs
fears and concerns and overall quality
planning, conducted by a WV ATC
(Khanna et al., 2010) showed that the
of life. The WV ATC is a state-funded,
education specialist. From there, a team
mental HRQOL among autism caregivers
statewide agency with a mission to support
of people important in the life of the
was lower than the general population.
individuals with ASDs as they pursue a life
person with autism is assembled. The team
Among the key findings were that greater
of quality. In the 1980s through mid-1990s,
includes the family, educators, neighbors
behavioral challenges in the child with an
the model of providing services was
and friends, and anyone who has an
ASD was associated with greater caregiver
based on a consultant model. Education
interest in supporting the person with
burden and lower physical HRQOL, and
specialists would observe the child,
autism and their family. Person-centered
that caregivers who had greater social
conduct assessments, develop intervention
planning activities facilitated by the WV
support had better mental HRQOL. These
plans, and teach the family and educators
ATC education specialist help the team
findings are valuable for anyone providing
how to implement the plans. It became
members understand the interests and
38 Autism Advocate
• SECOND EDITION 2010
Educating Children with AUTISM
SPECIALIZED DAY SCHOOLS
n
PRE-K – 12 th GRADE
V illa g e Gle n S ch o o l Brid g e p o rt S ch o o l Yo u n g L e a r n e rs P re sch o o l S u n rise S ch ool n
n
RESIDENTIAL PROGRAMS EARLY INTERVENTION
n
n
SOCIAL SKILLS PROGRAMS ASSESSMENT SUMMER CAMPS PARENT EDUCATION n
n
Founded in 1975, The Help Group serves children, adolescents and young adults with autism and other special needs and is the largest, most comprehensive nonprofit of its kind in the United States. Recognized as a leader in the field, The Help Group offers a wide range of innovative autism spectrum disorders programs. Its four specialized day schools serve 950 students on a daily basis, ages 3 through 22.
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w w w. t h e h e l p g r o u p . o r g SECOND EDITION 2010 •
Autism Advocate 39
]
FAMILY FOCUS PROCESS
But within the structure, each PBS plan is highly unique for that child and each family plan meets the needs of the individual family.
Planning Alternative Tomorrows with Hope (PATH) A PATH is a person-centered planning tool developed by Pearpoint, O’Brien and Forest (1998). This tool is usually incorporated into the first family focus support team
strengths of the individual with autism.
approach, we focused on the importance
The team receives workshop-style training
of not only developing technically sound
in evidence-based practices for individuals
behavioral intervention strategies, but also
with ASDs, including how to conduct
developing behavioral interventions that
a functional assessment. There is one
fit well with the people and environments
full-day workshop a month during the
where implementation occurs (Albin,
first four months of the process. There is
Lucyshyn, Horner & Flannery, 1996).
also one half-day FFPBS team meeting
The importance of family context on
approximately every month or more, as
improved child outcomes led us to
needed for the duration of the process.
incorporate family-centered planning
The job of the team is to support that
activities from the start of our process. This
individual in reaching his or her potential
planning incorporates activities that are
and living a quality life in the community.
modifications of activities developed within
The team develops a comprehensive
through time to determine how the team
the context of person-centered planning
will reach those goals. For example, if the
(e.g., Falvey, Forest, Pierpoint & Rosenberg,
positive and possible goals are set to be
1994; Kincaid, 1996; Mount, 1994).
accomplished in one year, the facilitator
The process by which the facilitator (staff
might then work on a six-month goal
of the WVATC) begins to understand
by asking the team, “What have we
education specialist is removed from the
family context includes the development of
accomplished six months from today?”
team. A new facilitator is selected to carry
a series of “frames” that result in a family
and “Who will help us accomplish this?”
on the support plan, modify it as necessary
profile (Kincaid, 1996). The information
Once those goals are established, the
and build on successes.
communicated by families in a variety
PBS plan and, together, they implement it under the guidance of the WV ATC education specialist. Once all components and elements of the plan are in place and working effectively, the WV ATC
The structure of the model remains consistent for every participating family. But within the structure, each PBS plan is highly unique for that child and each family plan meets the needs of the individual family. The process can last up to a year until the PBS plan is fully implemented and all team members are comfortable with it. Below are a few key elements within the
of topic areas is depicted through words and pictures on large pieces of paper or “frames.” Topic areas include family history, important people in the family’s life, places in the community where the family goes, the family schedule for weekdays and weekends, family health, adaptive and challenging behaviors of the individual, family fears, family choices,
total process that must relate to quality of
personal stressors, and strategies that
life, well-being and health.
work and do not work to reduce those stressors. The facilitator then assists the
meeting and serves to provide direction for the entire team. The process begins with the individual or the family describing their dream for their child. The dream is depicted by words, phrases and pictures that are displayed on large butcher paper in view of the support team members. The team then looks at the elements of the dream and determines goals that are positive and possible within a specified time period (usually six months to two years). The process then works backwards
facilitator continues with three-month, one-month and first-step goals (those that will be accomplished in the next three to five days). Specific tasks towards reaching the goals are written on the PATH. The process includes the identification of people and agencies that will need to be enrolled to ensure the success of the plan. The PATH is reviewed at subsequent team meetings that are usually scheduled to occur on a monthly basis. Progress and/or barriers, along with action plans to keep the process moving forward, are discussed at these meetings.
Family-Centered Planning Activities
family in identifying themes that are common among the frames. The process
The Family Focus Support Team
In order to move away from an expert-
concludes with the development of a family
The family focus support team provides
driven and prescriptive consulting
futures plan.
the group action planning component of
40 Autism Advocate
• SECOND EDITION 2010
FAMILY FOCUS PROCESS [
the model and is the driving force behind
in a play. A young man on the spectrum
Falvey, M.A., Forest, M., Pearpoint, J., &
the success of the behavior support
learned to drive (which was never thought
Rosenberg, R. (1994). All my life’s a circle.
plan. Turnbull and Turnbull (1996)
imaginable). A husband and wife had a
Using the tools: Circles, MAPS and PATH.
described group action planning as a tool
date for the first time in 8 years and were
Toronto, Canada: Inclusion Press.
for providing comprehensive supports
confident their child was safe. A young
to families. The team consists of people
boy with an ASD became an exceptional
who are significant in the life of the focus
photographer and took pictures without
individual. They make a commitment
his mom holding onto him. When we think
to participate in team meetings, make
of quality of life, these can be the moments
contributions to the development of
that define it.
action plans and help implement specific
How did these achievements happen when
components of the plans.
families never dreamed they were possible? A team of individuals came together to
Khanna R., Madhavan, S.S., BeckerCottrill, B., Smith, M.J., Tworek, C., & Patrick, J.H. (2010). Burden and healthrelated quality of life among caregivers of children with autism spectrum disorders. Unpublished dissertation. Kincaid, D. (1996). Person-centered planning. In L.K. Koegel, R.L. Koegel, & G. Dunlap (Eds.), Positive behavioral support:
The Behavior Support Plan
figure it out and then systematically put
Consistent with a PBS approach, the
the right interventions and supports in
Including people with difficult behavior in
behavior support plan is a comprehensive
place. Addressing family concerns from the
the community (pp. 439 - 465). Baltimore:
plan that documents all of the action plans
beginning of intervention can lead to major
Paul H. Brookes Publishing.
of the support team. Several authors (i.e.,
shifts in how families begin to perceive
Mount, B. (1994). Benefits and limitations
Bambera & Knoster, 1998) have developed key areas that should be an integral
their child and their own quality of life. The of personal futures planning. In J. Bradley, journey is not so scary if the right supports J.W. Ashbaugh, & B.C. Blaney (Eds.),
part of any support plan. These include
are identified and implemented.
Creating individual supports for people
functional assessment plans and resulting
References
with developmental disabilities: A mandate
data, targeted behaviors and strategies, alternative skill development, long-term lifestyle goals and strategies to address quality-of-life issues.
Conclusion Outcomes from this type of family-focused service delivery model can be monumental. While they may seem insignificant to
Albin, R.W., Lucyshyn, J.M., Horner, R.H., & Flannery, B. (1996). Contextual fit for
for change at many levels (pp. 97-108). Baltimore: Paul H. Brookes Publishing.
behavioral support plans. In L. Kern-
Pearpoint, J., O’Brien, J., & Forest, M.
Koegel, R.L. Koegel, & G. Dunlap (Eds.),
(1998). PATH, A workbook for planning
Positive behavioral support: Including people
positive, possible futures. Toronto, Canada:
with difficult behavior in the community
Inclusion Press.
(pp. 81-98). Baltimore: Paul H. Brookes Publishing.
Turnbull, A.P., & Turnbull, H.R. (1996). Group action planning as a strategy for
many, they can be tremendous milestones
Bambara, L.M., & Knoster, T.P. (1998).
providing comprehensive family support.
to FFPBS families. For example, a child
Designing positive behavior support plans.
In L.K. Koegel, R.L. Koegel, & G. Dunlap
with an ASD went trick or treating for
Innovations, 13. Washington, DC: American
(Eds.), Positive behavioral support: Including
the first time at age 12. Another child
Association on Mental Retardation.
people with difficult behavior in the
invited a friend for a sleepover. A young
Easter Seals. (2008). Living with Autism
community (pp. 99-114). Baltimore: Paul H.
woman on the spectrum performed a song
Study. Chicago: Author.
Brookes Publishing.
About the Author Barbara Becker-Cottrill, Ed.D. Barbara Becker-Cottrill, Ed.D., is the Executive Director of the West Virginia Autism Training Center at Marshall University in Huntington, W.V., and also an adjunct graduate professor at Marshall University, teaching courses related to autism. She is the chair of the Autism Society’s Panel of Professional Advisors.
SECOND EDITION 2010 •
Autism Advocate 41
feature ]
Fitness Programs
Ph oto co u r t e s y o f e r ic c h e s s e n
My l ast gro u p of the day inclu de s six girl s ran ging from 12 to 15 ye ars old. The y huddle in the corner , at tempting Play: The forgotten curriculum
Finding Fitness
How (and How Not) to Create Exercise Programs for the ASD Population By Eric Chessen, M.S., YCS
some form or another . implementing many fitness programs and activities—some that have not worked too well, many that have—and I can now make a good distinction between the two.
30-foot piece of fire hose. That may not
The last near-decade has been a journey
seem the epitome of fitness equipment, but
to bring together the worlds of fitness
as they begin jumping over the hurdles,
and autism. There is a lot of information,
throwing the big medicine ball and
misinformation and confusion between
swinging the hose so that it makes giant,
the two, and I have spent a lot of time
blue waves across the room, it is pretty
attempting to convince people that fitness
clear that these are enjoyable activity
is important for individuals with autism.
choices. We finish with a slightly modified
I have also spent time educating parents
version of tag, as the concept of “it” and
and professionals on what fitness actually
“not it” is often difficult for young people
is, and why many PE and sports programs
with autism. Game theory aside, fitness is
fail to provide it.
for every individual on the spectrum.
• SECOND EDITION 2010
way to conf use me in
I set up some low plastic hurdles and a
an important foundation for quality of life
42 Autism Advocate
to figu re o u t the b e st
The existing supporting research verifies the importance of vigorous physical activity
I am currently at an interesting point in
for young people. There are significant
my career. I have had the experience of
cognitive, emotional/self-regulatory/
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SECOND EDITION 2010 •
Autism Advocate 43
]
Fitness Programs
adaptive and general physical benefits to being physically active. Both preventative and productive results are derived from regular physical activity, from decreased risk for type II diabetes, cardiovascular disease and certain types of cancer, to the enhanced self-esteem, strength and flexibility that we develop in a well-structured physical fitness Ph oto co u r t e s y o f e r ic c h e s s e n
program. It is safe to conclude that fitness is beneficial for all populations. Unfortunately, through the popularity of fast food, sedentary lifestyles and decreased outdoor play, we have spent the last two decades exploring the alternatives to fitness. According to most reports, it is not turning out well for our
Pulling is an essential movement pattern.
nation’s youth.
Fitness Goals for the Autism Population
...true play encompasses creativity, imagination, initiative and vigorous, active repetition, which are vitally important skills.
The two biggest obstacles in promoting and introducing fitness to the autism population are 1) accounting for the physical, cognitive and adaptive/self-regulatory issues common
life. For young individuals with autism, play
human experience. Play is also a skill that can
to individuals with ASD; and 2) selecting
skills are often an area of difficulty.
be taught using exercise as the components.
appropriate physical activities. I can put
For example, I have been working with
together the greatest series of hopping
Learning Play Skills
exercises, but if my athlete with autism
Children and young individuals with ASD
focused on increasing both his tolerance to
cannot yet tolerate standing on two spot
often have a deficit in their imaginary or free
physical activity and performing multiple
markers and making eye contact with me,
play skills. Much gross motor development
steps of an activity, such as picking up a ball,
this exercise is not going to be effective or
relies upon exploratory activities, including
carrying it overhead and then throwing it.
enjoyable.
climbing, jumping, running, and variations
These are skills that may or may not be easily
of bending and squatting. When these
taught, but have a great role as “foundational”
behaviors do not emerge in childhood, there
movement and play skills. During breaks
Fitness programs for individuals with autism should have two main goals: 1) get the participants moving well, and 2) find ways to make movement enjoyable. Much has been done to eradicate the idea and actual inclusion of play from the daily activities of children (and adults). Contrary to popular practice, true play does not involve a television or computer screen.
is an increased risk of muscular imbalances, low muscle tone and lack of initiative to engage in free play or movement activities. The deficit is widened due to today’s sedentary lifestyles, poor nutrition and few opportunities to participate in vigorous fitness activities.
“Frankie” for about six years now. We have
from specific activities, Frankie will now pick up a Sandbell (a neoprene disc filled with sand) and throw it around, or jump over the hurdles. He is beginning to incorporate movement into non-structured activities. The generalization component is enormous.
Rather, true play encompasses creativity,
I often refer to my fitness programs as
Generalization
imagination, initiative and vigorous, active
“structured learning for chaotic situations.”
Generalization is the ability to perform a
repetition, which are vitally important skills. Play is chaotic; it is random, fun and
specific skill in a variety of situations. This
By vital, I mean something that refers to real
is one of the limitations of sports activities.
44 Autism Advocate
• SECOND EDITION 2010
something that is an essential part of the
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SECOND EDITION 2010 •
Autism Advocate 45
]
Fitness Programs
...it is important to consider individual goals and how they can be appropriately applied to a fitness curriculum.
examples I have experienced is a parent or educator describing how they have their child/ teen/student running on a treadmill. My first question is, “Why?” The answer is usually, “Because it is exercise.” A pair of socks is
Sports, while certainly beneficial for a
Appropriate Fitness Programming
variety of physical, social and cognitive
From an educational and life skills
processes, include a very specific set of
perspective, our job as parents, teachers
skills. These sport-specific movement/
and professionals is to regularly identify
activities do not generalize much to daily
an individual’s areas of need and address
living skills or many other athletic and play
them in the most adaptive way possible.
situations. There is a reason there are very
There is a reason that so many students
few professional athletes playing more than
have difficulty in a standard classroom
one sport. Being good at baseball is not a
Types of Movement
setting. The focus on taking tests rather
prerequisite for being good at soccer, and
For simplicity’s sake, I usually break
than “learning how to learn” leads to skills
being good at tennis is not a prerequisite for
movements down into the following five
that are not necessarily applicable to future
being good at football. These are all highly
primary categories. Developing a program
needs and goals. For fitness programming,
specified activities.
around all five different movement patterns
my hierarchy tends to look something like
is a great start to a well-rounded fitness
Consider general fitness and play as
this (in order of importance):
program. The movements can be as simple
the roots and trunk of a tree. Sports are the branches. We do not need all of the branches in order to have a healthy,
1 Develop, maintain and enhance movement skills
2 Pair exercise and physical activity
stable root and trunk system, but we do
with reinforcement to ultimately make
need those roots and trunk to grow solid
the activities themselves fun and part
branches.
of a lifestyle
General physical fitness—pushing, pulling,
3 Increase initiation and creativity
climbing, jumping and throwing—builds
skills through exposure to various
the foundation for success in specific
modalities of exercise (different
athletic activities. It has been my
equipment and activities)
experience that most young individuals
4 Support socialization through small
on the autism spectrum are not exactly
group activities that include elements
“jumping up and down” to play a team sport
of teamwork and helping behaviors
clothing, but if I put them on and walked outside to get the garbage can off the street, I’d have some problems (and be uncomfortably cold). The point is that it is essential to include a variety of movements and activities for general fitness and physical development.
or complex as the needs/abilities of the participant(s).
• P ushing: Movement away from the body • Pulling: Movement towards the body • Bending/squatting: (can be either pushing or pulling/lifting) • Rotation: Movement around the body • Locomotion: Movement from one space to another By categorizing movement categories, parents, educators, therapists and other professionals can develop well-balanced programs that are appropriate for any individual or group.
(many of them have trouble enough just
For individuals with autism who often have
Instead of focusing on a particular sport or
jumping up and down, and some do it in
difficulty attending to a task for durations
individualizing muscle groups (arms, legs,
excess). However, even if they do not want
longer than 10 or 20 seconds, creativity
shoulders), movement-based exercise teaches
to be part of a team, we must encourage
and socialization behaviors are not an
the body to function as a cohesive, optimized
them to be physically active in other ways.
immediate goal. It is far more beneficial to
unit. For example, upper-body pulling
General physical fitness and play are not
set up a progressive plan for participating
motions, from pull-ups to monkey bars to
just the cornerstones of athletic success;
in fitness activities for moderate durations
resistance band pulls, incorporate the upper
they contribute to optimal functioning in
of time, and introducing several modalities
back muscles, shoulders, arms and hands. In
a variety of different areas. Therefore, it is
and movements. Most PE or adaptive sports
addition to developing strength and stability,
important to consider individual goals and
programs focus on a single modality or
these exercises can aid with posture. Have
how they can be appropriately applied to a
activity to the detriment of more general,
you ever told an individual to “sit up straight?”
fitness curriculum.
global skills. One of the most common
The fact is you cannot force good posture. It
46 Autism Advocate
• SECOND EDITION 2010
Fitness Programs [
has everything to do with the proper muscle
while exposing the athlete to multiple forms of receives. Play and general exercise will
stability. Again, a program that includes
the five fundamental patterns. Other favorites
always serve an important role for both
pulling as a component, as opposed to
are hops, jumps, overhead carries with soft
sport-specific athletes and those who do
walking on a treadmill for 40 minutes, has
medicine balls or Sandbells, a variety of
not engage in a specific athletic activity. I
tremendous benefit for a variety of physical
throws and swinging long segments of rope.
and adaptive abilities.
consider all of the individuals I work with
Many of these modalities would be considered
athletes. They perform vigorous physical
How do we put together a program that
non-traditional, but historically speaking
activity on a regular basis, and progress in
is suitable for an individual or group of
have a far more embedded and proven place in
both their enjoyment and abilities within
individuals with autism? It is important to
physical culture than any machine or aerobics
consider their current level of ability and
fitness. If our goal is to provide individuals
class out there today. They are also fun,
tolerance for new activities or tasks. I have
on the spectrum with the abilities and
inexpensive and conducive to providing fitness opportunities necessary to succeed in for any age or functional level. both the short and long term (thereby
found much success with using animal-based movement patterns, both for mobility and movement assessment. Bear walks, crab
Conclusion
enhancing their quality of life), physical
walks, frog hops, gorilla steps and various
It should be evident that fitness is far more
fitness must be included as a life skill.
improvised movements allow for creativity
important than the credit it commonly
About the Author Eric Chessen, M.S., YCS Eric Chessen, M.S., YCS, is the founder of Autism Fitness. In addition to working with his athletes on the autism spectrum, Eric consults and presents workshops and seminars around the country. He has also written a chapter on fitness for the forthcoming book Autism Tomorrow. For more information, visit www.AUTISMFITNESS.com.
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SECOND EDITION 2010 •
Autism Advocate 47
feature Oral Healthcare for CHILDREN WITH AUTISM
A Healthy Mouth Leads to a Healthy Body Oral Healthcare for Children with Autism
Let me start by saying that oral healthcare should not be considered separate from general healthcare.
and promote proper oral care to all, but especially to those in our communities who may struggle with many facets of everyday life, such as the autism population.
By Dr. Robert Porper, DDS
48 Autism Advocate
• SECOND EDITION 2010
First, I think it would be helpful for me to
Although this concept has been known
explain who I am and what I have been
and accepted for many years, it has more
doing for the last 25 years, and why it is an
recently begun to take root in the medical
honor and privilege for me to share some
community. People who do not practice
of my thoughts and experiences treating
good oral hygiene often develop serious
people on the autism spectrum.
dental issues that can lead to poor health
I am a retired oral maxillofacial surgeon,
and disease elsewhere in the body. It is
which means I have been trained to
important for dental professionals to teach
maintain good oral hygiene for people who
i llu st r at i o n co u r t e s y o f i sto c k ph oto.com
]
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
SECOND EDITION 2010 •
Autism Advocate 49
]
Oral Healthcare for CHILDREN WITH AUTISM
gums using the correct American Dental Association’s brushing technique. I gave the toothbrush to the couple’s son, who had autism. He immediately ran into the bathroom and brushed his teeth with no toothpaste. When he came out of the bathroom, he was so excited about the toothbrush; he was showing and telling everyone how much he liked it, saying “my toothbrush has two heads.” His parents were amazed. They told me he i llu st r at i o n co u r t e s y o f i sto c k ph oto.com
never brushed his teeth by himself and it was difficult for them to brush his teeth for him. That night was an eye opener for me. I realized that so many people need help and guidance to be able to care for their loved ones who have special challenges. I thought that I could possibly be an advocate to educate and provide these families with ideas, programs, products and advice to
have dental disease, and repair injuries
fun. Try to choose a brush with a larger
to the jaws and facial bones. When I was
handle that a child can hold easily.
in training, I had a special interest in
When I was a practicing dentist, I was also
treating and caring for those children
somewhat of an inventor of products that
and adults who had special challenges,
would make it easier for patients to take
Dental Visits
especially autism. I found that not a lot of
care of their teeth and gums. I learned a lot
Children with autism can be difficult to
other professionals wanted to treat these
about proper design for a toothbrush and
care for in many ways because they find it
patients because of the extra effort it took
tried to envision designs that would make
hard to deal with some of their daily duties
to work with them. I am sure that those of
it easier and quicker for kids to brush their
due to sensory issues, especially those
you who have a child with ASD or work
teeth. After I retired about 8 years ago, I
involving the mouth. A trip to the dentist
with an individual with autism understand
finally had time to devote to applying my
can be a frightening and painful experience
what I mean.
knowledge about oral healthcare for the
for the child and a heart-wrenching one
autism population.
for his or her parents/caregivers. However,
One interesting story illustrates my
there are dentists who are knowledgeable
growing enthusiasm for assisting
and well equipped to deal with special-
individuals with autism with their health-
needs patients. To find one near you, visit
experience, you should try and make it fun
care needs. I was at a film event with many
the Autism Society’s online database,
and explain why it is important to brush
families who had children with autism. I
www.autismsource.org.
their teeth. Show them by modeling teeth
happened to sit next to a couple who were
Dr. Daniel Ravel, DDS, FAAPD
brushing and let them touch the toothbrush
very active in the autism community. I
(dentalresource.org/doctorravel.htm), a
bristles, so they can feel that they are
had with me a prototype of my specially
practicing pediatric dentist in Fayetteville,
soft and won’t hurt them. There are also
designed toothbrush that I had made a
North Carolina, offers the following
musical toothbrushes with cartoon handles
number of years ago, called the Twinbrush.
suggestions for dentists treating children
available, which can make brushing more
It has two heads angled to the teeth and
on the autism spectrum:
Teeth Brushing Getting children to cooperate in brushing their teeth can be very frustrating. In my
50 Autism Advocate
• SECOND EDITION 2010
make this part of their lives a little easier. A simple toothbrush could be just the beginning.
At age 2, our son disappeared into the world of autism. Erik Lovaas and ABA helped bring him back home.
Ryan, age 2
Ryan, age 8
Our son started talking at 13 months. By 18 months, he didn’t say a word. His bright, shining eyes turned to a blank, hollow stare. He’d look past us to a world of his own. At age two, Ryan was diagnosed severely autistic. Despite my shock, I researched various treatments. We tried the gluten-free casein-free diet, to no avail. Then I learned that ABA (Applied Behavioral Analysis) had the only research-backed record of success. I also knew a child who’d made great strides with ABA led by Erik Lovaas. Erik is the son of Ivar Lovaas, the man who first developed ABA back in the 1950s. Erik has carried on his father’s work while continuing to improve ABA techniques over the years. Our son is living, fun-loving proof of its effectiveness. Ryan hasn’t used an aid since preschool, and he just completed second grade with straight A’s. He loves to play two-square and chess with his friend Karson. Best of all, the school just tested him and found he is now too high functioning to retain an IEP. Ryan’s recovery is truly a miracle. Well, a miracle plus a few years of ABA.
To learn more, call 702.877.2520 or visit TheLovaasCenter.org
]
Oral Healthcare for CHILDREN WITH AUTISM
• Offer parents and children the
• Talk calmly in direct, short phrases.
external world and at the same time
opportunity to tour your dental office,
Watch what you say since children
reflects what is happening deep
so that they may ask questions, touch
with autism often take everything you
inside the body.
equipment and get used to the place.
say literally. Avoid words or phrases
All forms of potential diseases that can
Allow children to bring comfort items,
with double meanings.
affect the general health of people, such
such as a blanket or a favorite toy. • Children with autism need sameness and continuity in their environment. A gradual and slow exposure to the
• Once the patient is seated, begin a
as heart disease and cancer, can be linked
cursory examination using only your
to the condition of the mouth. People
fingers. Keep the light out of their eyes.
with poor oral health tend to have poor
• Next, use a toothbrush or possibly a
overall health. More information is needed
dental office and staff is therefore
dental mirror to gain access to
to improve America’s oral health and
recommended.
the mouth.
eliminate health disparities. We do not have
• Solicit suggestions from the parent or caregiver on how best to deal with the child.
• Praise and reinforce good behavior. Ignore poor behavior. • Invite the parent or caregiver to hold
• Children with autism are easily overwhelmed by sensory overload, such as loud noises, sudden movement and things that are felt. This can cause “stimming” (flapping of arms, rocking, screaming, etc.). • Make the first appointment short and positive. • Approach the child in a quiet, non-threatening manner. Don’t crowd the child.
the child’s hand during the dental examination. • Some children are calmed by moderate
providing care. Explain the procedure before it occurs. Show the instruments that you will use. Provide frequent praise for acceptable behavior. • Invite the child to sit alone in the dental chair to become familiar with the treatment setting. • Children with autism want to know
practices and care for the U.S. population as a whole and its diverse segments, including racial and ethnic minorities, individuals with disabilities such as autism, the very young and the elderly. We all are aware of the difficulty and expense involved
pressure, such as a papoose board
in locating and getting to a dentist or
to wrap the child in. On the other
professional who is equipped to treat
hand, “light” touch (such as air from
people with disabilities (for resources, visit
the dental air syringe) can agitate
www.autismsource.org). Overall, access
them. You may be more likely to have
to appropriate dental care for people with
problems wrapping a blood pressure
special needs is poor, to say the least.
cuff around the arm than by inflating it.
We all know that early detection and
• Some children may need sedation
• Use a “tell-show-do” approach to
adequate data on health, disease, and health
treatment of diseases is extremely
or general anesthesia so that dental
important for good health outcomes. One
treatment can be accomplished.
of the major ways to promote health and
Good Oral Health Leads to Improved Overall Health As I mentioned earlier, proper oral healthcare plays a vital part in maintaining general good healthcare. A number of years ago, the Surgeon General of the United States, Dr. David Satcher (2000), wrote an
what’s going to happen next. Explain
article titled “The Mouth is the Gateway to
what you’re doing so it makes sense to
Good Health.” In it, he said the following:
them. Explain every treatment before
The mouth is a readily accessible and
it happens.
visible part of the body and provides
wellness is through early prevention of disease, including dental/oral problems. As I discussed briefly at the beginning of this article, dental disease can play a major role in contributing to general disease, for everyone. People with autism and other disabilities are particularly at risk. I believe we should consider promoting a National Oral Health Plan, as was discussed a number of years ago by then Surgeon General Dr. David Satcher.
health-care providers and individuals
The Twinbrush
why you need to touch them, especially
with a window on their general health
On another note, I have been working for
when using dental or medical
status. As the gateway of the body,
some time in trying to get people to practice
equipment.
the mouth senses and responds to the
prevention of dental disease. I recently was
• Always tell the child where and
52 Autism Advocate
• SECOND EDITION 2010
Oral Healthcare for CHILDREN WITH AUTISM [
The Twinbrush
and the bristles are multi-diameter, so that
population who may have challenges
the inner row bristles are firmer whereas
maintaining proper dental and oral
the outer row bristles are softer. This
hygiene. If oral health is not treated as a
allows the brush to be very effective in
priority, then our population as a whole
cleaning the gums with the softer bristles
could have diminished health and quality
and removing plaque on the crowns of the
of life.
teeth with the firmer bristles. The handle has been slightly enlarged to provide for a
Reference
better grip for patients and for caregivers
U.S. Department of Health and Human
who use it to brush their children’s teeth.
Services. Oral health in America: A report
The Twinbrush will be available for
of the Surgeon General. Rockville, Md.:
purchase at www.twinbrush.com.
U.S. Department of Health & Human
festival, but it is now greatly improved. The
In conclusion, I would like to stress
Services, National Institute of Dental and
product has been enhanced in many ways.
the importance of good oral health
Craniofacial Research, National Institutes
The overall head design is now smaller
for everyone, particularly the autism
of Health.
asked by the editor of a national newsletter to bring to market a product that has been an excellent tool for kids and people with disabilities. Yes, it is the same toothbrush that was given to the boy at the film
About the Author Dr. Robert Porper, DDS
Dr. Robert Porper, DDS, is a retired oral maxillofacial surgeon. For more information, visit www.twinbrush.com or e-mail Dr. Porper at Drp@twinbrush.com.
SECOND EDITION 2010 •
Autism Advocate 53
feature Diet and Nutrition
Autism Diets and Nutrition Providing Health Benefits for Many Children with ASD By Julie Matthews, CNC
for yeast infections, attention to digestive
As a Certified Nutrition Consultant, I have
Diet can help some children with autism.
issues, special dietary requirements,
been supporting children with autism for
Autism is a whole-body condition;
nutrient and fatty acid supplementation,
almost a decade, specializing in the science
therefore, it is imperative for your child’s
behavioral therapy and more. Many
and application of autism diets, nutrition
health that you understand the connection
practitioners recommend multifaceted
and supplementation. My life’s work is
between what is happening in your child’s
treatment plans that balance physician-
dedicated to the millions of kids worldwide
body and brain and what you are feeding
recommended approaches and nutrition-
him or her daily. It is also important to
centered autism diets.
champion your child’s condition by noting
Some parents hesitate to try autism diets
every healing strategy that is working—for
because they don’t know if special diets
some children, changes in diet, additions
work, why they may work or how they
of special vitamins and minerals, and other
work. When parents correctly implement
nutritional considerations can improve
specific autism diets, improvements in
their condition.
gastrointestinal problems (including
and nutrition. Relying on my experience
Leading autism clinicians recognize that
diarrhea and constipation), language,
and research, in this article I will explain
the bodies of children with autism are
learning, focus, attention, eye contact,
the benefits of autism-specific diets and
unique and require specific care, including
behavior, sleep difficulties, toilet training
why they should be considered when
enzymes for digestion, medical treatment
and skin rashes/eczema have been observed.
implementing your child’s treatment plan.
54 Autism Advocate
• SECOND EDITION 2010
who live with autism and their parents who are passionately committed to helping their children find hope and healing. I joined the field of autism nutrition after significant study, training and collaboration with parents, physicians, nutritionists and educators who have hands-on experience with autism diagnosis, treatment, research
i llu st r at i o n co u r t e s y o f i sto c k ph oto.com
]
SECOND EDITION 2010 •
Autism Advocate 55
]
Diet and Nutrition
A Child’s “Gut”: Autism Symptoms Begin Here
nutrients and/or the presence of offending
M.D., Ph.D., the Autism Society’s Director
substances. For many children, altering
of Treatment Guided Research, who was
The common physical symptoms of
food choices and adding supplementation
one of the first to describe autism this way,
children with autism often include
affects these processes, promotes healing
refers to the brain as “downstream” from
diarrhea, constipation, bloating and
and can improve autism symptoms.
the body’s functioning, as illustrated in the
GI pain, frequent infections, sleeping challenges and inflammation/pain. For
Why Diet Can Help: Autism as a Whole-Body Disorder
many children with autism, when things
Historically, autism was considered a
go awry in the “gut,” negative behavioral
“mysterious” brain disorder, implying that
changes and cognitive problems occur
it begins and ends in the brain. Through
or are exacerbated. For many, food
the array of common physical symptoms
intolerances, imbalanced biochemistry
observed and the breakthrough work
and digestive problems are at the core of
of many autism researchers, a more
these symptoms. These weaknesses in
appropriate “whole-body disorder” (that
physiological functioning can be directly
the brain is affected by the biochemistry
tied to biochemical processes that are
generated in the body) perspective of
body, toxins enter the bloodstream and
affected by diet—the absence of requisite
autism has emerged. Martha Herbert,
make their way to the brain where they
figure below. On the left side of the chart are the complex set of factors that influence autism: toxins, environmental factors, digestive health and inflammation. The right side indicates the effects these factors can have on the brain. Imbalanced biochemistry can affect the brain and the symptoms of autism in the following ways: • When there is yeast overgrowth in the
i llu st r ati o n co u r t e s y o f i sto c k ph oto.com
Whole Body Disorder
56 Autism Advocate
Brain is Downstream 1. Yeast toxins 2. Undermethylated neurotransmitters 3. Brain inflammation 4. Increased toxicity 5. Nutrient deficiencies 6. Opiates
• SECOND EDITION 2010
From: Nourishing Hope for Autism
Diet and Nutrition [
By supporting digestion and biochemistry through diet and nutrition, we can often improve the symptoms of autism.
positively affect the symptoms of autism.
can cause symptoms such as spaciness,
According to Hippocrates, “All disease
How to Begin: Dietary Modifications to Improve Leaky Gut and Gut Inflammation
foggy thinking and drunken behavior.
begins in the gut,” and this certainly
Improving digestion, reducing
proves true with autism. As you can see,
inflammation and healing the gut are
methylation is not working properly,
digestion and gut health affect both the
important steps in overall health and
neurotransmitters cannot be
brain and autism’s physical symptoms.
healing. Behavior, language, eye contact
methylated (and therefore are not
Food interacts with the gut constantly
and skin rashes are a few of the areas that
“activated”) as they need to be,
and can have a profound impact on these
increasing the likelihood of anxiety,
symptoms. Removing the offending foods
depression, ADHD and sleeping issues.
that contribute to inflammation, trigger
• When the biochemistry of
can improve. The following dietary changes are a good place to start: • Remove foods that inflame the gut.
immune response (food sensitivities)
Gluten, casein, soy, corn and eggs are
and increase toxicity, and adding foods
common offenders. The exact foods to
and supplements that support a healthy
remove will depend on the individual;
ecosystem and provide needed nutrients
however, gluten- and casein-free
can ease symptoms.
diets are among the most popular and
activity, leaning over furniture, eye
Understanding that gut and brain are
effective. Sugar and refined oils also
poking and head banging.
connected helps explain why autism
contribute to inflammation.
• Inflammation in the gut and brain can be caused by toxins, food sensitivities, or bad bacteria or yeast in the gut. This can cause pain that may lead to behaviors such as self-injurious
• When detoxification is poor (proven
symptoms and overall health can be
• Add foods that heal the gut. Foods
common in autism), toxins from
improved through a diet that supports
such as ginger and turmeric reduce
food and the environment (such as
digestion/GI health and biochemistry,
inflammation. Fish oil, flax seeds and
salicylates, artificial ingredients, MSG,
although each individual will have different
walnuts contain omega-3 fatty acids
mercury and aluminum) can build up
responses to the addition of one of several
that have anti-inflammatory properties.
and act like drugs on the brain, causing autism diets and nutritional changes.
Fermented foods help heal the gut.
irritability, aggression and brain/
GI health and biochemistry are partners.
Butyric acid is a short-chain fatty acid
cellular damage.
Biochemistry involves cellular processes
(often produced by good bacteria from
that require energy, nutrients and enzymes
the consumption of soluble fiber) found
too permeable (leaky gut), the nutrients
to function, and proper digestion is
in butterfat and ghee that helps nourish
that are supposed to go through the
required to obtain and absorb the nutrients
the intestinal lining.
digestive system cannot be absorbed
needed for these processes. If there are
properly. This leads to nutrient
insufficient nutrients, an inability to
bacteria. Fermented foods, such as
deficiencies, which can affect all
digest and absorb nutrients, a limitation
non-dairy yogurt, young coconut kefir
cellular function, including poor brain
on a particular nutrient or an inability to
and cultured vegetables, help supply
function and immune system failure.
convert a nutrient to the active and usable
good bacteria that reduce inflammation
• When digestion is poor and the gut is
• Opiates can be created from inadequate form, biochemistry can go awry.
and the whole body’s biochemistry, and
• Include foods that supply beneficial
and create an environment that is healing.
breakdown of gluten, casein and soy,
By supporting digestion and biochemistry
leading to symptoms of opiate excess,
through diet and nutrition, we can often
such as foggy thinking, insensitivity to
improve the symptoms of autism. Following
bacteria levels. Prebiotics are foods,
pain, opiate addiction and withdrawal,
are several examples of how food and
often high in soluble fiber, that support
and irritability.
nutrients can improve the health of the gut
good bacteria and increase levels in the
• Add foods that increase beneficial
SECOND EDITION 2010 •
Autism Advocate 57
]
Diet and Nutrition
gut. These foods include: asparagus, bananas, beans/legumes, chicory root, garlic, honey, kefir/yogurt, leeks, onions and peas. i llu st r ati o n co u r t e s y o f i sto c k ph oto.com
Nutrient Deficiencies Is your child a picky eater? Due to sensory issues, many children on the autism spectrum dislike the tastes and textures of certain foods; therefore, nutrient deficiencies are common. Specific nutrients are required for complex biochemical processes, and nutrients can only be digested and absorbed through food and supplementation when the GI tract is functioning well. In addition to boosting digestion, it is important to get a wide variety of nutrients through foods. Some ways to boost nutrient intake include: • Increase the quality and digestibility
supplementation is particularly
as the Specific Carbohydrate Diet
important when dairy is removed
(SCD) that eliminates starches that can
from the diet.
feed yeast, such as potatoes, corn and
of food. Boost the amount of nutrient-
Yeast Overgrowth
dense foods, such as vegetables, in the
Yeast is a harmful organism that can
diet. For ideas on increasing variety, see
affect energy level, clarity of thought and
the list of nutrient-dense foods below.
intestinal health. Yeast overgrowth is often
Soaking and fermenting grains increases
triggered by antibiotic use. Yeast overgrowth
digestibility.
creates gut inflammation and decreases gut
• Sneak in vegetables for picky eaters. Pureeing organic vegetables and adding them to meatballs, smoothies, pancakes, muffins and sauces is a great way to disguise them. Try juicing to get concentrated nutrients that are easy to digest—making ice pops from organic juices or smoothies is a good way to serve nutrient-dense vegetables and fruits to kids. • Add supplementation. It can be difficult for a child with autism to get the required therapeutic levels of nutrients through food. Adding
function. The following dietary practices help rid the body of yeast overgrowth: • Remove sugars. Sugars feed yeast, contributing to yeast overgrowth. Reduce the amount of cookies, muffins and other sugar-rich treats . Even sugar in fruit, especially dried fruit and fruit juice, can be a problem for some. • Remove yeast-containing foods. Bread, grapes, plums, aged meats and cheeses,
gluten-free grains. • Add probiotic-rich foods. Fermented foods contain live beneficial bacteria that crowd out yeast and support a healthy internal environment; thus, adding probiotic supplementation is recommended.
Toxicity and Poor Detoxification When detoxification is not working optimally or is overburdened by pre-existing toxins, avoiding additional toxins from food is important. These chemicals can cross the blood-brain barrier and affect the brain, creating hyperactivity, aggression, irritability and sometimes self-injurious behavior. Ways to remove toxins include: • Avoid food additives. Artificial
and vinegars can feed yeast and should
ingredients are very difficult for the
be removed.
body to process, so avoiding artificial
• Reduce or remove starches. Like sugar,
colors, flavors, preservatives and MSG is crucial.
vitamins, minerals, fatty acids or amino
carbohydrates feed yeast. Reducing
acids can be helpful in boosting needed
refined carbohydrates that convert to
nutrients. Introducing enzymes that aid
sugar rapidly and have little nutritional
preparation. Prevent the introduction of
with digestion of foods and probiotics
value decreases the foods yeast have to
further toxins into the body by avoiding
can supply beneficial bacteria. Calcium
feed on. Some people choose diets such
aluminum and plastic in cooking. This
58 Autism Advocate
• SECOND EDITION 2010
• Avoid toxins in food supply and meal
e c n e r Confe ponsors S
The Autism Society gratefully acknowledges the following organizations for their generous donations and support during the Society’s 2010 Conference & Exposition.
®
Indiana Resource Center for utism
SECOND EDITION 2010 •
Autism Advocate 59
]
Diet and Nutrition
includes aluminum pans and aluminum
are one set of biochemical pathways that do
biochemistry and reducing autism
foil, as well as storing and microwaving
not function optimally for many children
symptoms.
in plastic. Minimize or eliminate canned with autism. These pathways—involved in
I hope that parents and practitioners can
the processes of detoxification, heavy metal
see the possibilities for positive influence
• Eat organic. Eat high-quality foods that
elimination, digestion, immune function,
and realize that diet can help autism. Diet
are free of pesticides and hormones,
cellular/metabolic function, gut integrity
is a powerful personal tool; it has few
such as organic produce, grass-fed
and microbial balance—can be supported, as
downsides and is accessible to everyone.
meat, and pastured eggs and chickens.
follows, by avoiding certain substances and
With diet, parents have greater control
Non-organic chicken can contain
supplying needed nutrients.
over choices that can have immediate
foods and drinks.
arsenic. Eating organic foods avoids
• Remove phenolic foods. When the
impact on a child’s daily life. For some
consumption of pesticides, other
biochemical processes of methylation,
children, improvements can occur right
harmful chemicals, GMOs (genetically
transsulfuration or sulfation are not
away as offending foods/substances are
modified organisms) and hormones.
functioning well, limiting phenols
removed from their diet.
Organic foods also provide higher
and salicylates is important. Artificial
Anyone can implement a new diet. A
nutrient content.
phenols occur in petroleum-derived
good way to start is to remove artificial
additives, such as artificial colors,
ingredients, reduce sugar, avoid gluten
Antioxidants, such as beta carotene;
flavors and preservatives. Even
and casein, add fermented foods or
vitamins A, C and E; B vitamins,
naturally occurring phenols, called
probiotics, and include more vegetables.
including folic acid; and selenium
salicylates, present in organic and
As you move forward, an autism
support liver detoxification. Sulfur-
non-organic foods such as grapes,
practitioner with diet and nutrition
rich foods, such as broccoli, cabbage,
raisins, apples, berries, almonds,
expertise can help determine the best
cauliflower, collard greens, kale
honey and more, can create a variety
dietary principles for your child, help get
and Brussels sprouts are especially
of behavioral, emotional and physical
you out of a food rut and ensure your child
beneficial in liver detoxification
symptoms.
is getting adequate nutrition. They can
• Add foods that support the liver.
processes.. Spices, such as cinnamon
• Improve methylation and sulfation
and turmeric, support the liver.
through supplementation.
Glutathione is a powerful antioxidant,
Supplementing with nutrients that
and adequate levels are supported
can support these biochemical
by the consumption of asparagus,
pathways is important. Methyl-donors
watermelon, broccoli, papayas, avocados
also provide food and meal suggestions as you become fully compliant with the new diet. Many online autism diet support groups, books and blogs are available to help families.
and methylation/transsulfuration
Whether you reach out to a nutrition
support, such as vitamin B12, folate,
consultant or start on your own, getting
B6, DMG/TMG, magnesium and
good nutrition, avoiding problematic
Poor Methylation and Sulfation Biochemistry
zinc, are important supplements
ingredients and supporting good digestion
to consider. Determining which
are practices that will benefit everyone in
Medical studies have shown that
supplements are needed and adding
the family.
methylation, transsulfuration and sulfation
them can be helpful to regulating the
and the herb, milk thistle, as well as through nutritional supplementation.
About the Author Julie Matthews, CNC Julie Matthews, CNC is an internationally respected Certified Nutrition Consultant specializing in autism spectrum disorders. She provides diet and nutrition intervention guidance backed by scientific research and applied clinical experience. She is the author of the award-winning autism diet and nutrition guide Nourishing Hope for Autism and Cooking to Heal autism nutrition cookbook. Julie is a Defeat Autism Now! practitioner, conference educator and nutrition faculty member. For more information, visit NourishingHope.com. 60 Autism Advocate
• SECOND EDITION 2010
2010wards
A
Autism Society Awards Committee:
Elizabeth (Liz) Roth, Cathy Pratt, Ph.D., and Lynn Stansberry Brusnahan, Ph.D. The Autism Society recognizes individuals and organizations at the National Conference for contributions to the autism community and/or for extraordinary accomplishments. Individuals and agencies are nominated for these awards and scholarships. There are a number of awards that are offered by the Autism Society each year. The Autism Society awards include: Volunteer of the Year, Literary Work of the Year, Professional of the Year, Outstanding Individual with Autism, and Media Excellence in Video, News or Print. In addition, the Autism Society gives out CVS/”All Kids Can” Scholarship Awards. In the fall of the year preceding the National Conference, a “call” for awards along with the Eligibility Guidelines is extended through the ASA-Net e-newsletter, the Autism Advocate magazine and the Autism Society Chapter Network. All nominations must be submitted by the deadline date with the proper supporting information and copies. These are then given to the Autism Society Awards Committee for review. After determination of the eligibility requirements and deliberation by the Committee, awards are identified. This is not an easy process. Many good, qualified submissions are received in each category and the committee must select which ones will receive the award for the year. This is a difficult process. The Autism Society, along with the Awards Committee, would like everyone who submits a nomination to know they are all worthy of receiving an award. We wish we could give an award to each person. Just being entered for an award shows that this person or the work submitted has had an influence in the autism field.
Autism Society Volunteer of the Year An award presented to a chapter member whose work has positively influenced the lives of individuals, parents and professionals coping with autism in his or her community. Heidi Hass | Autism Society of Alaska Golden Heart Chapter
Autism Society Literary Work of the Year A literary work published or copyrighted within the last 5 years that has made a significant contribution to the broader autism community. Family/Social Division: The New Social Story Book: Revised and Expanded 10th Anniversary Edition by Carol Gray Education Division: Inclusive Programming for High School Students with Autism or Asperger’s Syndrome By Sheila Wagner, M.Ed.
Autism Society Media Excellence in Video or Print
Autism Society Audrey I. Horne Memorial Award
A video/film/DVD production or news feature or series released in the last 5 years that has made a significant contribution to the autism community.
Given to an individual or organization that has made an enduring contribution to improving adult services and the quality of life for those individuals living on the autism spectrum.
The Power of Words By Judy Endow, MSW
Professional of the Year Awarded to a professional in the field of autism (educator, speech language therapist, social worker, occupational therapist, psychologist, psychiatrist, medical doctor, researcher or other) who has demonstrated outstanding accomplishment in contributing to the life/lives of individuals with autism and/or to the cause of autism in general. Lee Stickle, M.S.Ed.
Outstanding Individual with Autism
Anna Penn Hundley
2010 CVS/“All Kids Can” Scholarship Award Administered by the Autism Society of America, this scholarship is awarded to an individual with autism who has successfully met all the requirements for admission into an accredited postsecondary program of study. Robert Clifton Boling, Alyssa Raven Fowler, Korey David Mervenne, Phuong Lan Thi Nguyen and Alexander C. Roehrkasse
Demonstration of exceptional dedication, effort or achievement. Areas to be considered can include, but should not be limited to: academics, the arts, athletics, community service, employment, extracurricular activities, transition or independent living skills. Kristen Nicole Moore
SECOND EDITION 2010 •
Autism Advocate 61
feature ]
Healthy Environments
Creating Healthy Environments The Importance of Reducing our Risk to Toxic Exposures
A l l p e op l e h av e t h e ri g h t t o l i v e , s t u d y, wor k an d p l ay in saf e an d h e a lt h y e n v ironm e n t s .
By Cathy Ficker Terrill, M.S.
This includes people with various vulnerabilities and limitations, such as learning, developmental and intellectual
Children are uniquely vulnerable to environmental exposures because their biological systems are still developing. During fetal development, exposures to even tiny amounts of toxins at certain developmental stages can have lifelong health impacts. By safeguarding children 62 Autism Advocate
• SECOND EDITION 2010
i llu st r ati o n co u r t e s y o f i sto c k ph oto.com
disabilities, as well as those with autism.
Healthy Environments [
from toxic exposures, we can protect
Bobby Rush (D-IL) and Henry Waxman
everyone. We need to create healthy
(D-CA) introduced the Safe Chemicals Act
environments to ensure that all children
of 2010—long-awaited landmark legislation
can reach their full potential, have the
that would overhaul the way the federal
best possible quality of life and contribute
government protects the public from toxic
to society.
chemicals.
Given the increasing rates of autism, the
The Safe Chemicals Act goes a long way
costs associated with long-term care of
toward bringing our failing chemical
those with disabilities, special education
management system into the 21st
and related health-care costs will continue
century. It puts health first, provides
to grow. The recent health-care debate
better information to businesses and
suggests that we need to do everything we
helps the average consumer avoid toxic
can to decrease costs by taking preventative chemicals in everyday products. However, actions. Reducing environmental
this important bill still has room for
contributors to neurological problems will
improvement, and the Autism Society is
serve to save families, communities and
currently advocating for strengthening it
society significant expenses in the future.
and working with Congress to make it more
The Need for Chemical Reform
difficult for new harmful chemicals to enter the marketplace without first being tested
The connection between toxic
for safety. However, they need your help.
environmental exposures and
Please write to your Representative and
neurodevelopment is an emerging area
Senators to encourage them to cosponsor
of concern. According to a 1994 study,
and strengthen this legislation:
approximately 16 percent of children in the United States have some form of
http://tiny.cc/o58ym.
Yeargin-Allsopp, 1994). Rates of autism
Effects of Environmental Exposures
and attention deficit hyperactivity disorder
Toxins in our environment should be
(ADHD) continue to rise. Exposures
a major concern for all of us. Some
to environmental toxins, such as lead,
developmental disabilities are caused
mercury and chemicals in plastics and
by exposure to toxins prior to birth or
personal care products, can harm brain
during childhood. Large amounts of
developmental delay (Boyle, Decoufle, &
development and contribute to learning and neurotoxic chemicals are released into the
developmental disabilities. Incredibly, the
environment every year. However, because
vast majority of the 80,000 chemicals used
the connection between environmental
in commerce have never been screened for
toxins and neurodevelopment is an
human health impacts. Comprehensive
emerging area, much more research needs
reform of chemical policy is crucial if we
to be done. To learn more about the link
are to reduce exposures that are associated
between environmental health and autism,
with developmental disabilities and prevent
the Autism Society offers a free online
further harm to vulnerable populations.
course at http://tiny.cc/45itk.
A first step toward this reform occurred
Exposure to environmental toxins, such as
on April 15, 2010, when Senator Frank
lead, mercury, polychlorinated biphenyls
Lautenberg (D-NJ), and Congressmen
(PCBs), alcohol and tobacco, have all been SECOND EDITION 2010 •
Autism Advocate 63
]
Healthy Environments
...over 80,000 different chemicals are in use in the United States, and about 1,000 new chemicals are added each year.
Many of these chemicals stay in the human body and continue to accumulate, causing damage over the long term.
Chemical Biomonitoring Project A 2005 study by the Environmental Working Group (www.ewg.org) (Houlihan, J. et al., 2005) found 287 chemicals in the umbilical cord of newborn infants, with each sample containing chemicals that cause cancer, brain damage, birth defects i llu st r ati o n co u r t e s y o f i sto c k ph oto.com
and reproductive damage. This study paved the way for further research. The American Association on Intellectual and Developmental Disabilities (AAIDD; www.aaidd.org) recently launched a biomonitoring project to detect the presence of chemicals in the body. The proven to cause permanent developmental
As mentioned previously, over 80,000
purpose of the study is to look at trends in
disabilities. Other toxic exposures, such
different chemicals are in use in the United
chemical exposure in the human body.
as pesticides, solvents, flame retardants,
States, and about 1,000 new chemicals are
My daughter is 23 and has neurological
plastics and heavy metals (e.g., excessive
added each year. Yet, less than 10 percent
disabilities that are impacted by
manganese) also disrupt brain development
of these chemicals have been tested for
environmental allergies to cleaning
(AAMR, 2004).
their effects on human health (EPA, 2007).
products, perfumes, nail polish, paint
64 Autism Advocate
• SECOND EDITION 2010
i llu st r at i o n co u r t e s y o f i sto c k ph oto.com
Healthy Environments [
and other chemicals. My daughter and
associated with neurological damage. Many
I volunteered to be part of the AAIDD
more of these chemicals have never been
biomonitoring project. The study results
tested for their effects on humans.
indicated that 61 chemicals out of the 89 tested were found in the bodies of all 12 project participants. All participants tested positive for at least 26 chemical toxins in our bodies. My daughter and I had detectable levels of BPA, mercury, lead, polybrominated diphenyl ethers, perfluorinated compounds (PFCs), perchlorate and organochlorine particles in our bodies. Considering that we
References AAMR. (2004). Pollution, toxic chemicals, and mental retardation: Proceedings of a
The onset of disease or disability can
National Wingspread Summit: Framing a
be triggered by many different factors.
national blueprint for health promotion and
However, reducing exposure to neurotoxic
disability prevention.
chemicals can help restore the neurological and developmental health of all children. We need a federal chemical policy—and the introduction of the Safer Chemicals Act is a positive first step—that offers safeguards
Boyle, C.A., Decoufle, P., & Yeargin-Allsopp, M. (1994). Prevalence and health impact of developmental disabilities in U.S. children. Pediatrics, 93(3):399-403.
have been living in an allergy-free house for
for the health of all children by providing a
Environmental Protection Agency. (2007).
more than 15 years, this is disturbing, to say
chemical safety net.
HPV Chemical Hazard Data Availability
the least.
I never gave anyone permission to put
My daughter and I decided to be part of this
untested chemicals in the bodies of my
study to raise awareness about the need to
children. We all have a right to know more
change the regulations that currently permit about what harm these chemicals may
Study. Available at: www.epa.gov/HPV/ pubs/general/hazchem.htm. Houlihan, J., Kropp, T., Wiles, R., Gray, S., & Campbell, C. (2005). Body burden: The
Americans to be exposed daily to hundreds
cause, in which products they can be found,
pollution in newborns. Washington, DC:
of chemicals, some of which have been
and how and when we are exposed to them.
Environmental Working Group.
About the Author Cathy Ficker Terrill, M.S. Cathy Ficker Terrill, M.S., has been a professional in the field of developmental disabilities for 32 years. She is currently the CEO of the Ray Graham Association in Downers Grove, Ill., which is dedicated to the full participation of all people with developmental disabilities in a quality life. Cathy is the past President of the American Association on Intellectual and Developmental Disabilities, and the proud parent of a self-advocate with developmental disabilities and environmental allergies.
SECOND EDITION 2010 •
Autism Advocate 65
What‘s new at the autism Society ]
Autism Society News
News
Ph oto co u r t e s y o f Flic k r .com
Successful April Events Raise Funds and Awareness for the Autism Society
Riders Rolled through Jacksonville for Autism Awareness
The Autism Society and Pump It Up,
Baker Curb Racing Teamed Up with
on Jacksonville, Fla., for the 8th annual Lex
the Autism Society to Promote Autism
and Terry’s Ticket to Ride to raise funds (over
Awareness Month
$40,000) and awareness for autism.
During the month of April, the Autism
the nation’s largest and fastest-growing
The 70-mile police-escorted ride rolled
Awareness Puzzle Ribbon adorned the hood
franchise of giant indoor inflatable
through Clay and Duval counties. Sponsored
of Scott Lagasse, Jr.’s, No. 43 Ford Fusion
playgrounds for private parties, teamed up
by radio personalities Lex Staley and Terry
with the NASCAR Nationwide series. Also
for the third straight year to host “Bounce
Jaymes, Ticket to Ride supports the efforts of
on the hood were the names of Peyton
for Autism” last April in 144 locations
the Autism Society to improve the lives of all
Mattingly and Lee Badesch, who are both
affected by autism.
on the autism spectrum. Mattingly is a close
Many thanks to Adamec Harley-Davidson in
friend of Baker Curb Racing, and Badesch,
Jacksonville for hosting this event for the 8th
representing the Autism Society, was on
straight year. The ride would not happen with
the No. 43 pit box on Saturday, April 24th,
them. Also, a big thank-you to our sponsors:
serving as the Honorary Crew Chief for the
Adamec Harley Davidson, Lex and Terry,
Aaron’s 312 race in Talladega. For more
Planet Radio, Clear Channel, Carrabbas,
information and race photos, visit
Budweiser, Dunkin Donuts and Coca Cola.
www.bakercurb.com.
nationwide. Over $60,000 was raised for the Autism Society. This community-based fundraising event combines family fun with raising awareness and support for autism in locations that welcome children on the autism spectrum. Autism now affects one in every 110 children in America, and the Autism Society and Pump It Up hope to energize families affected by autism and their friends to raise funds for and awareness of autism today. The sensory environment at Pump it Up encourages people with autism of all ages to run, jump, laugh and play in an environment where they feel comfortable and accepted. Participants form a Bounce Team and ask friends, family, community members and anyone else to support the cause by giving a donation to sponsor them. This event promotes physical fitness and helps families
News
Autism Advocate Temple Grandin Included in the TIME 100 Thanks to everyone who vote for author, autism advocate and animal scientist Temple Grandin in the TIME 100 online poll. Temple’s final rank in the online poll was 32, and she was featured in the April 29th issue of the magazine, which honored 100 “people who most affect our
affected by autism, while having fun at the
world.” Check out the profile and photo
same time. For more information, visit
essay here: http://tiny.cc/qrr77
www.bounceforautism.org. 66 Autism Advocate
• SECOND EDITION 2010
Ph oto co u r t e s y o f T h e Auti s m s o ci e t y
Bounce for Autism
On May 1, over 1,000 motorcyclists converged
Advocacy [
ADVOCACY
To take action and ask your Representative and Senators to cosponsor and work to strengthen this legislation, visit http://tiny.cc/uygv5.
ph oto co u r t e s y o f i sto c k ph oto.com
management system into the 21st century. It puts health first, provides better information to businesses, and helps the average consumer avoid toxic chemicals in everyday products. However, this important bill still has room for improvement, and with your
Safe Chemicals Act of 2010 and Toxic Chemicals Safety Act of 2010
help we’re confident we can make it even stronger. We want to work with Congress to make it harder for new harmful chemicals
On April 15, Senator Frank Lautenberg
governs chemical regulation, and has
to enter the marketplace without first being
(D-NJ), and Congressmen Bobby Rush
been unchanged since it passed in 1976.
tested for safety.
(D-IL) and Henry Waxman (D-CA)
Increasingly, scientists are coming to a
To take action and ask your Representative
introduced the Safe Chemicals Act of 2010—
consensus that autism is caused by a
and Senators to cosponsor and work to
long-awaited landmark legislation that would
combination of environmental and genetic
strengthen this legislation, visit http://tiny.
overhaul the way the federal government
factors. Toxic chemicals may pose a
cc/uygv5.
protects the public from toxic chemicals. On
serious risk for both causing autism, and
that same day, Congressmen Bobby Rush
exacerbating the symptoms in people with
(D-IL) and Henry Waxman (D-CA)
autism, which is why the Autism Society
circulated a draft version of the Toxic
actively educates policymakers on the need
Chemicals Safety Act of 2010.
for strong chemical management reform.
The Autism Society is proud to be the only autism-specific organization to be a member of Safer Chemicals, Healthy Families (www.saferchemicals.org), a coalition that works to promote common-sense
Under the current law, the Environmental Protection Agency has only been able to require basic health and safety information for about 200 of the over 80,000 chemicals on the U.S. market.
The House Energy and Commerce Committee has concluded the stakeholder feedback regarding the draft bill of the Senate version—the Toxic Chemicals Safety Act of 2010. The Autism Society participated in this feedback process. The bill has already been introduced in the Senate and we look forward to the formal introduction of this important legislation in the House. Visit http://tiny.cc/uygv5
Toxic Substance Control Act (TSCA)
The Safe Chemicals Act goes a long
to ask your Senators and Representative to
reform. TSCA is the law that currently
way toward bringing our failing chemical
cosponsor this crucial legislation.
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.
SECOND EDITION 2010 •
Autism Advocate 67
What‘s new at the autism Society ]
Advocacy
ADVOCACY
New Hampshire, Iowa, and Kansas Pass Insurance Legislation
intensity or with the same goals as a treatment program. HB 569
New Hampshire
states clearly that it should not be
The Autism Society is pleased to report that
interpreted as reducing the obligation
autism insurance reform was passed by the
that schools have to deliver a free and
New Hampshire Senate on May 5. HB 569-
appropriate education.
FN (“Connor’s Law”) was previously passed in the New Hampshire House on January 6, and is expected to be signed by Gov. Lynch soon, making New Hampshire the 20th state to pass such legislation. The Autism Society applauds the hard work and dedication of Sen. Margaret “Maggie” Wood Hassan, Rep. Suzanne Butcher, Rep. Susi Nord, Administrative Director of the NH Council on Autism Spectrum Disorders Kirsten Murphy, Autism Society of New Hampshire President Michelle Jarvis and countless others in the Granite State that were instrumental in getting “Connor’s Law” passed. HB 569 is not a new mandate, but rather, the legislation clarifies what “treatment” means under NH’s existing mental health parity law as it is applies to autism spectrum disorders. Treatments that will be covered include habilitative or rehabilitative care, pharmacy care, psychiatric care, psychological care and therapeutic care. It requires insurance companies to cover treatment when prescribed or ordered by a medical professional following the guidelines adopted by the American Academy of Pediatrics and other professional groups. Just like any illness, treatment will be subject to periodic review for medical necessity. There is a maximum annual benefit of $36,000 for children ages 0-12, and a maximum annual benefit of $27,000 from age 13-21. Furthermore, HB 569 does not replace existing services. While special
To learn more about Connor’s Law, visit http://www.connorslaw.info/.
Iowa The Autism Society is also pleased to report that autism insurance reform passed in Iowa on April 29, when Governor Chet Culver signed Standing Appropriations Bill, HF 2531, containing an amendment creating autism insurance coverage of evidencebased, medically necessary autism therapies for state employees. Iowa became the 19th state to enact autism insurance reform. The Autism Society is grateful to Representatives Mark Kuhn and Christopher Rants who helped push the amendment through the House. The amendment was modeled after SF 2349, which was sponsored by State Senator Daryl Beall and passed by the Senate last month. HF 2531 requires the state employees’ health plan to provide coverage for the diagnosis and treatment of autism spectrum disorders for state employees and their families, and will require coverage to be provided to individuals under the age of 21. This bill is subject to an inflation-adjusted maximum
that recognizes the needs of Kansas children and their families affected by autism spectrum disorders. HB 2160 requires the Kansas State Employees Health Care Commission to cover services for the diagnosis and treatment of autism spectrum disorder in any covered individual under 19 years old. The bill stipulates that coverage must be provided in a manner determined between the autism services provider and the patient. Coverage will also be subject to the same annual deductibles and coinsurance provisions as established for other physical illness benefits. The bill takes effect upon its publication in the
coverage of the following treatments:
Kansas Statute Book.
diagnosis, habilitative or rehabilitative care, pharmacy care, psychiatric care, psychological care, therapeutic care and Applied Behavior Analysis (ABA). Additionally, HF 2531 calls for the commissioner, in consultation with the board
same types of therapies to help a child
of medicine, to adopt rules providing for the
learn, this is not done at the same level of
certification of behavior specialists.
• SECOND EDITION 2010
Gov. Mark Parkinson signed a bill on April 19
benefit of $36,000 annually and provides
education programs may use some of the
68 Autism Advocate
Kansas
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.
Conferences [
conferences
Registration Now Open for 2010 OCALI Conference The 2010 Ohio Center for Autism and Low Incidence (OCALI) Conference is scheduled for November 17-19, 2010, at the Greater Columbus Convention Center in Columbus, Ohio. Over 200 sessions will be presented by scholars, leaders and experts from across the United States and beyond. Over 90 exhibitors are expected to showcase the latest products and services for individuals with autism and low-incidence disabilities. Learn more or register at: http://conference.ocali.org.
conferences
©Di s n e y
Autism Asperger Publishing Company Holds Conference for Parents and Educators The Autism Asperger Publishing Company will hold a two-day conference entitled , “Teaching Communication Skills to Children with Autism and Other Developmental Disabilities,” on August 9-10, 2010, at the Alerus Center in Grand Forks, N.D. The
Ph oto co u r t e s y o f t h e O r l a n d o C V B
Ph oto co u r t e s y o f t h e O r l a n d o C V B
featured speaker is Vincent J. Carbone,
2011 Autism Society Conference Returns to Orlando
Ed.D., BCBA, LLC, who has over 30 years’ experience designing learning environments for persons with autism and developmental disabilities. Professional development credits for educators and CEUs for ASHA and BCBA will be offered. Early bird rates are in effect until July 16, 2010. For more information and/or to register, visit www.asperger.net.
The Autism Society’s 2011 Conference will be held at the Gaylord Palms Hotel and Convention Center in Orlando, Fla., July 6-9, the same site as the 2008 conference. The Call for Papers will open in the fall at the conference web site: www.autism-society.org/ conference, we look forward to receiving your submissions! For general conference questions, please contact Sarah Mitchell, conference manager, at conference@autism-society.org, and for exhibit, sponsorship and advertising information, please contact Meg Ellacott at Ellacott@ autism-society.org.
Penn State Autism Conference The 14th Annual Penn State Autism Conference provides comprehensive, evidence-based information to assist SECOND EDITION 2010 •
Autism Advocate 69
What‘s new at the autism Society ]
Conferences & chapter news
Marcia Eigelberger, California
active and responsive lessons, making
Bob Dickie, Michigan
the classroom comfortable, and providing
all educational team members, other
Denise Caruso, Ohio
adaptations, supports and opportunities
professionals and families in developing
Steve Oswald, Vice President of Chapter
for communication and social skill
effective educational programming for all
Relations
development.
continued from page 69
students with autism spectrum disorders.
Also in attendance was Cathy Pratt, Chair,
Video clips, hands-on activities, helpful
The conference will be held August 2-6,
National Board of Directors.
websites and real-world examples will
We estimate that the first Delegate
be featured throughout the training. For
Assembly meeting will take place in the
information and registration, contact Jane
spring or summer of 2011.
Pribek at jpribek@asw4autism.org or
2010, at the Penn Stater Conference Center Hotel in State College, Penn. For more information or to register, visit the conference Web site: http://tiny.cc/8s5pu.
(920) 973-4080. Or register online at chapter news
chapter news
http://tiny.cc/8w55z.
Autism Society of Wisconsin Presents Fall Conference
Delegate Assembly Task Force Meeting Held
On September 23-24, 2010, the Autism
The Delegate Assembly Task Force met on
Society of Wisconsin will hold its fall
May 22 in Chicago to develop a forum for
conference, entitled “You’re Going to
chapters to:
Love this Kid”: A Two-Day Mega Training
1 discuss a wide range of interests;
on Educating Students with Autism in
2 empower chapters to directly participate
Inclusive Schools, at the Wintergreen
in decisions on significant issues that
Resort & Conference Center in Wisconsin
affect them and that require National
Dells. The conference is co-sponsored
Board of Directors policy decisions; and
by the Wisconsin Department of Public
3 ensure a governance structure that links
Instruction. In this interactive session,
Index of Advertisers 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.
Advertiser
Page
ASD Visual Aids
BC
chapter boards with each other and the
Autism Asperger Publishing
37
featured speaker Paula Kluth, Ph.D.,
National Board of Directors.
Bob’s Red Mill
5
will teach participants practical ways of
CareTrak Inc. International
43
supporting students with autism spectrum
The Chicago School
43
Barbara Newhouse, Chair
labels and other disabilities within a general
College Internship Program
31
Liz Freeman Floyd, Indiana, and member
education classroom. Topics addressed
Eden Autism Services
27
of the National Board of Directors
include defining (and redefining) autism,
EmFinders 21
Tom Ibis, Texas
listening to the voices of those with autism,
Geneva Centre
21
Michelle Jarvis, New Hampshire
differentiating instruction, creating more
The Glenholme School
45
GoGo Juice
31
Task force members include:
Got-Autism 45 Heartspring 55 The Help Group
Advertising Opportunities The Autism Advocate is the largest, most read, comprehensive national magazine devoted to autism available today.
Contact Reem Nourallah at potompub@ aol.com to double your exposure with a free insertion in our online edition.
70 Autism Advocate
• SECOND EDITION 2010
17, 39
The Hope Chest
47
Kennedy Krieger Institute
49
The Lovaas Center
51
MetLife 11 OmegaBrite 2 SchKIDules 53 Tasks Galore
33
Woodbine House
33
Autis6m-9S, o2c0iety 11 july Gaylord Palms Hotel and Convention Center
Orlando, Florida
www.autism-society.org/conference
SECOND EDITION 2010 •
Autism Advocate 71
4340 East-West Highway, Suite 350 Bethesda, Maryland 20814 Address Service Requested
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