2nd edition of the Autism Advocate

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

Always There.

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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

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R2

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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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SECOND EDITION 2010 •

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.

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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

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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

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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.

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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

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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

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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

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All children under the age of 18 in the United States who have been diagnosed with an ASD by a professional are eligible to participate. The child must be enrolled in IAN Research by a biological or an adoptive parent who is legally authorized to provide consent. Once a research profile is created, other eligible family members may participate, including other biological/adoptive parents and any full or half-siblings (under the age of 18). All adults in the United States who have been diagnosed with an ASD by a professional are eligible to participate.

Adults with an ASD who are able to provide consent for themselves may create their own research profile and then add additional eligible family members, including any biological/adoptive children (under the age of 18) and any other parents of these children. Adults with an ASD who are not able to provide consent must be enrolled in IAN Research by a legally authorized representative (such as a guardian).

Once a research profile is created, other eligible family members may participate, including biological and/or adoptive parents of the individual with an ASD. ASD diagnoses that are included in IAN Research are: Autism or Autistic Disorder, Asperger Syndrome, Childhood Disintegrative Disorder (CDD), Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS), Pervasive Developmental Disorder (PDD), Autism Spectrum Disorder (ASD).

Principal Investigator: Paul Law, MD MPH Contact: ResearchTeam@IANproject.org JHM IRB#: NA_00002750

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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

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