New Organization for Autism Research

[Guest guest]

Wanted to share this newsletter with you from a new organization that

is dedicated to funding applied research to help families and

individuals living with autism today. There is no fee for families

to become a members.

RESEARCH AND RESOURCES THAT HELP FAMILIES TODAY!

OAR is pleased to bring you its first edition of The OARacle, a

monthly e-newsletter containing news and resources for the autism

community.

In this issue:

· Message from OAR's President

· Latest News

· Resources

· Upcoming Events

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A FEW WORDS FROM OAR PRESIDENT JIM SACK

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" OAR is going to focus research on the generation living

with autism today. " That was our purpose in founding OAR last

December. It's been exciting to see our mission put into action.

We're taking a different approach with our focus on applied research,

our emphasis on feedback to the autism community, and our plan to

link the two. After you read this first edition of The OARacle, you

will share that excitement too.

As the father of two teenagers with autism, I applaud the work that

is being done in biomedical research. This research will eventually

tell us what causes autism, offer new treatment possibilities, and

hopefully lead to the prevention of this complex disorder one day.

Its promise, however, is clearly long term. It offers little today or

in the near-term for my son and daughter.

Through our funded research and information programs, OAR will

attempt to demystify autism by taking on difficult questions that

parents, families, teachers, individuals with autism, and caregivers

ask each day like: What are the components of effective education for

persons with autism? How do we best prepare adults with autism to

live and work in their communities? The pursuit and dissemination of

this practical knowledge is the essence of OAR's mission.

Let me tell you what OAR has accomplished to date and give you a

glimpse at our plans for 2003.

Our credibility starts with the quality and interest of the

Scientific Council, OAR's scientific and professional advisory board,

which came together in less than six months. (You will read more in

the news section of this newsletter.) A special thanks to Dr.

Gerhardt for his leadership in attracting this distinguished group to

OAR.

With the Scientific Council in place, OAR has just issued its first

call for research proposals to leading researchers, research

facilities, and university centers for disabilities across the

country. We will begin funding our first study on January 1, one year

to the day that we opened OAR's offices.

OAR is writing the " Parent's Guide to Research " intended

as a resource for parents of children newly diagnosed with autism.

The first copies will be available by year-end.

In 2003, OAR will fund its second round of research

studies in July. You will also see OAR's Autism Information Program

take form in an enhanced web site that will feature an " Ask the

Experts " series, the " Parent's Guide " I just mentioned, and the first

public conference of our Scientific Council.

The OARacle will keep you informed about these and other

activities and will invite you to take an active role along the way.

Thank you for your feedback, interest and support.

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NEWS

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OAR LAUNCHES APPLIED RESEARCH PROGRAM

Autism is a lifelong challenge. As their child grows, parents

search for answers about early intervention, then education, followed

by socialization and higher levels of education, housing, employment

opportunities and options for independent living.

Earlier this month, OAR issued its first Request for

Proposals (RFP) to solicit applications for innovative research

projects, thus officially launching its Applied Research Program. OAR

plans to fund two new studies: one focused on early childhood autism

treatment, Applied Behavior Analysis (ABA), and education; the other

targeted toward adults and their potential for successful employment.

According to OAR Scientific Council Chairman Gerhardt, these

areas of research are often overlooked due to lack of funding for

applied research and some flawed assumptions.

" There's a crying need for applied research like this and

there is a lot of confusion about what constitutes quality

programming (intervention) for an individual with ASD, " he

explained. " The term `ABA' is being used as a seal of approval for a

broad range of applications, delivered by a highly diverse pool of

professionals with extreme variations in training, experience and

credentials. Not only does this need clarification — and the

certification of behavior analysts is certainly one step toward that —

but we also need to better define those parameters that most

directly impact the effectiveness of interventions that are based

upon ABA. "

Gerhardt continued, " Except for their family members, the needs of

adults with autism were largely ignored. That's changing today. "

" A growing number of autism researchers, educators, and

professionals are beginning to explore ways to enhance the lives of

adults through research into jobs, housing, and even the concept

of `late intervention,' — i.e. treatments more effective later in

life. It's wide open. " Gerhardt, who serves as Executive Director of

the Nassau Suffolk Services for Autism and the C. Barell

School in Long Island, N.Y., further noted, " Researchers are

interested in these questions but they haven't had the opportunities

to study them. OAR is now offering those opportunities. I expect a

fairly significant response to our RFP. "

OAR will award two one-year grants for up to $30,000

each. The studies selected will rank among the first pilot studies in

a growing research portfolio related to childhood and adult issues.

Gerhardt believes studies such as these, which call for researchers

to analyze persons with autism at work and school, will provide

valuable information because the research will be conducted in

unaltered, natural settings.

Applications for these grants are due on Nov. 1. For more

information, please contact Mike Maloney, Executive Director, (703)

351-5031; mmaloney@....

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PROMISING RESEARCH!

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" [Results from a new study] suggest that experimental analysis of

precursor behaviors represents a promising method to decrease risk to

participants or caregivers during functional analyses of dangerous

behaviors. "

For a link to the complete article in the " Journal of Applied

Behavior Analysis, " please visit this Web site:

http://www.envmed.rochester.edu/wwwvgl/jaba_articles/2002/smith-35-

125.pdf

SCIENTIFIC COUNCIL PLAYS CRITICAL ROLE

Identifying other areas of research vital to increasing the quality

of life for individuals with autism is one of the primary goals of

OAR's newly formed Scientific Council. Headed up by Gerhardt, the

Council draws from a diverse pool of talent from inside and outside

the autism community.

The 11 members, two of whom are parents of children with autism,

represent academic centers and educational facilities from across the

country. Among them is Joanne Gerenser, Executive Director of Eden

II, a facility located in Staten Island, N.Y. that offers programs

for individuals across the lifespan.

She cites OAR's mission as the reason for her involvement. " I loved

the concept of OAR because it addresses the needs of people today, "

said Gerenser, who is also a speech pathologist. While serving on the

Council, her long-term goal is to encourage schools serving the needs

of children with autism to apply for research grants and conduct

research that may yield practical approaches to facility-based care.

" Even if we can get out small pieces of information, that would be

great, " she explained. " After getting a small grant, researchers can

then start thinking about applying for larger grants. "

The other members of the Scientific Council include:

- Glen Dunlap, Professor, Positive Behavior and Support Project for

the Department of Child and Family Studies at the Mental Health

Institute, University of South Florida in Louis de la Parte, Fla.;

- Fabrizio, Managing Partner of Fabrizio/Moors Consulting, an

educational and behavioral consulting private practice specializing

in fluency-based instruction for learners with autism in Seattle,

Wash.;

- Suzanne Letso, Chief Executive of the Connecticut Center for Child

Development

in Milford, Conn. and parent of a child with autism;

- Londner, Director of Medical Student Education at the s

Hopkins University in Baltimore, Md.;

- Anton Mulick, Professor, Department of Psychology, College of

Social Behavioral Sciences at the Ohio State University in Columbus,

Ohio;

- Myles, Associate Professor of Special Education at the

University of Kansas in Kansas City, Kan.;

- Powers, Newington Children's Center and Yale University in

New Haven, Conn.;

- Sprague, Professor Emeritus, Community Health, Kinesiology

at the University of Illinois in Champaign, Ill.;

- Luke Tsai, Professor of Psychiatry and Pediatrics at the University

of Michigan Medical School and Director, Developmental

Disorders/Autism Program of the University of Michigan Health System

in Ann Arbor, Mich., as well as a parent of a child with autism.

In the next year, the Scientific Council plans to bring together

other members of the autism community to discuss applied research

priorities and develop strategies for meeting those goals. Look for

further updates in upcoming editions of The OARacle.

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RESOURCES

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" PARENT'S GUIDE TO RESEARCH " – COMING SOON!

When a child is first diagnosed with an autism spectrum disorder,

many parents face immediate and difficult decisions about treatment

choices. Often they turn to information sources that offer diverse

viewpoints on therapies but few concrete answers on what is best for

their child.

Parents will soon have a central resource to aid them in

making the right choices. OAR, in partnership with Danya

International, is writing the " Parent's Guide to Research, " a basic

primer on autism research and reference tool for parents. The Guide

will contain a glossary of terms, an overview of scientific research,

how to determine if a particular study may or may not be

representative for a particular child as well as questions to ask

about treatments, therapies, and other methodologies under

consideration. This publication will be available in print and on the

Web later this fall.

Stay tuned for updates on the release date in future

editions of The OARacle.

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EVENTS

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OTHER VOICES VI

" An Evening with Shotgun and OAR, "

Carolines on Broadway, New York City

Mon., Oct. 21, 8 p.m.

Join us in the Big Apple for a comedy and cabaret evening

benefiting autism research and a New York City women's theatrical

organization. For the sixth year in a row, Other Voices VI makes it

possible to hear the voices of those not presently heard — rising

talent in the performing arts and those diagnosed with autism who

cannot speak.

Held for the fourth time at Carolines on Broadway, the

show will feature four excellent Broadway and cabaret personalities

and will be hosted by Nagy, the morning show anchor at New

York's hit station Z100. The event includes a cocktail reception,

followed by dinner. For information on tickets and sponsorships,

contact Ellen Maidman-Tanner, Director Programs and Development, at

(703) 351-5031; emaidman-tanner@....

WEST COAST AUTISM GOLF CLASSIC 2002

Vista Valley Country Club, Vista, CA

Mon., Nov. 18

OAR also invites you to its inaugural West Coast Autism Golf Classic

to be held at one of the most beautiful private courses in Southern

California – Vista Valley Country Club. All proceeds for the event

will support applied autism research.

Your day at the Club will include dinner, followed by an auction and

a trophy ceremony. As you enjoy the beautiful surroundings and the

challenge of team competition, you will be helping to establish this

Tournament as a premier, annual event for OAR on the West Coast.

Please contact Joy Marie Ciolino, OAR's West Coast Regional

Coordinator, at (760) 233-8766; jmciolino@... for information on

foursomes and sponsorship opportunities.

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Please feel free pass this e-newsletter along to a friend.

We welcome your comments, suggestions and questions about this

newsletter. Please e-mail us at oar@....

Funds raised go directly to the identification of research priorities

and the funding of applied research grants that will help individuals

and families TODAY. Please consider making an online donation through

our secure server on our Web site,

http://www.autismorg.com/autism/donations.htm. Or if you prefer,

please send us your donation to the address below. Donations to OAR

are fully tax-deductible. Thank you for your support!

Interested in sponsoring an edition of The OARacle? Please contact

Ellen Maidman-Tanner at emaidman-tanner@....

** TO SUBSCRIBE: To subscribe to this e-newsletter, visit

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Organization for Autism Research

2111 Boulevard, Suite 600

Arlington, VA 22201

(703) 351-5031