The OARacle
	The Monthly E-Newsletter of the Organization for Autism Research "Research and Resources That Help Families Today!" www.researchautism.org

JUNE/JULY 2005

Fiscal Year Wrap up and Progress Report

by Madeline Millman

Madeline Millman

I am excited to serve the autism community as Vice President of the Board of Directors of OAR. The Organization for Autism Research is unique among autism organizations because it is the only national autism group focusing primarily on finding solutions to the daily problems and challenges of those who live with the disorder.

OAR is currently finishing its most successful year. For the second year in a row we will have raised over a half a million dollars in total revenues and expect to raise almost one million dollars in the upcoming year. This is an awesome feat for such a fledgling organization.

With that money we have awarded a combined total of $360,000 for autism research over the past three years. In the last 12 months alone we have funded 6 new applied autism research pilot studies ($180,000 in total grants) and 6 graduate research projects to encourage students to focus on autism issues. In addition, the Board recently expanded the research programs to include proposals for two-year studies and plans to award up to $240,000 in grants in this year’s Applied Research Competition. This year’s grants will take us past the $500,000 mark in funded research studies.

Several years ago we saw a need for specific resources on autism issues such as understanding and evaluating research, education, Asperger Syndrome, adolescence and adulthood. We have since begun publication of our Life Journey through Autism series, a collection of community oriented guides on aspects of these subjects. The first two books in the series, A Parent’s Guide to Research and An Educator’s Guide, have been distributed to over 6,500 families, teachers and professionals in the autism field since 2003. As a result of our fundraising success, we have been able to reprint both of these guides and continue to provide them free of charge.

We are currently producing two more publications: Life Journey through Autism: an Educator’s Guide to Asperger Syndrome and a Guide for Transition to Adulthood. These books will also be distributed without any cost to their readers.

This October we will sponsor our annual national Applied Autism Research and Intervention Conference in Washington, DC for the third consecutive year. The conference attracts educators, parents, government officials, researchers, and students from all over the country. That same weekend more than 175 dedicated runners will represent OAR in the Marine Corps Marathon™, a significant increase from 2003 and 2004 when we had 60 and 80 marathoners, respectively. We project this year’s marathon will raise close to $250,000.

We are proud that OAR was the first autism charity to be selected as a Charity Partner by the Marine Corps Marathon™ two years ago. The Organization was also selected this year as an Associated Charity with the LaSalle Bank Chicago Marathon®, further establishing the RUN FOR AUTISM as an annual and national autism awareness and fundraising event. Our participation in the Chicago Marathon will extend our presence to the Midwest and place the RUN FOR AUTISM in front of an estimated 1.5 million spectators this October.

As a winter resident at the Polo Club in Boca Raton, Florida I am excited to be co-chairing a walk for club members and their guests to raise funds for autism research. This OAR/NAAR cooperative benefit walk will take place next February, and marks a new partnership between the two organizations. We hope to raise over $80,000 for applied and biomedical research.

On behalf of OAR, thank you for your interest and support. I look forward to undertaking more challenges in the future.

Madeline Millman is the vice president of OAR's Board of Directors. She is the grandmother of Gabe Friedman, a 12 year-old child with autism. She can be contacted by email.

Rave Reviews for Educator’s Guide Parents are distributing OAR’s latest publication, Life Journey through Autism: an Educator’s Guide, in an effort to increase autism awareness among teachers in schools across the country. Recently, Chris Moran, a member of a parent support group in Cecil County, Md. recently ordered 1,200 guides, one for every teacher in Cecil County Public School district, in the most comprehensive effort yet. The parent group plans to distribute the publication to the district’s teachers before the start of school in the fall. To date, OAR has distributed over 4,000 Guides to parents, teachers, and other front-line persons and professionals who teach, treat, or live with children or adults with autism. Copies of the Guide are currently available. To receive a complimentary copy of the Educator’s Guide or for more information on the Guide, please contact the OAR staff via e-mail or phone, (703) 351-5031.

NEWS

As Asperger Guide Nears Completion,
Work Begins on Fourth OAR Guide

In the December, 2004 issue of The OARacle, we introduced the next publication in OAR’s series of informative guidebooks entitled Life Journey through Autism: an Educator’s Guide to Asperger Syndrome. The initial review of this publication is now complete, and OAR is in the final stage of revisions and preparations for layout and publication. The Guide will be available for distribution during August thanks in large part to a grant from the American Legion Child Welfare Foundation. Like the first two publications in the Life Journey through Autism series, the Educator’s Guide to Asperger Syndrome will be distributed to parents, educators and other professionals free of charge.

“OAR’s new Educator’s Guide to Asperger Syndrome is another example of our commitment to meeting the needs of individuals across the autism spectrum through both the promotion of quality research and the dissemination of up-to-date, high quality information,” said Peter Gerhardt, Ed.D., chairman of OAR’s Scientific Council.

Scientific Council member, Brenda Smith Myles, Ph.D., assisted by her team of graduate students at the University of Kansas, wrote the initial draft. During May, a group of 21 independent reviewers, including parents of children with Asperger Syndrome, educators, and autism professionals, read the guide and gave positive feedback. They found the content complete, informative, and readily accessible to readers of all levels.

“I was very impressed,” said a parent reviewer of the Guide, whose 15 year-old son has Asperger Syndrome. “It is written in an easily understood, digestible way with enough examples to illustrate your points. Every time I thought of something that I didn’t think you had included, you managed to cover it in depth a few pages later.”

OAR’s fourth guidebook entitled A Guide for Transition to Adulthood, is expected to follow suit. It is currently in the initial writing stages, and will once again be produced in collaboration with Danya International, Inc., a health communications company who aided in the development of the first three publications in the Life Journey through Autism series. This newest book will be a resource for parents, teachers and other professionals on the myriad challenges associated with transitioning an individual with an Autism Spectrum Disorder (ASD) from young adulthood to adulthood. The many areas to be covered include vocational training for persons with ASD, government assistance, social skills training, and life skills to include money management, transportation and personal health.

For more information on the Life Journey through Autism series, please visit OAR's website or call (703) 351-5031. To request a copy of any OAR publication, please call Caitlin McBrair or send her an email.

Spotlight on OAR Conference Track:
Applied Research to Practice

In last month’s OARacle we began a new series on the 2005 Conference by highlighting the speakers and topics from the Current Autism Research track. This issue’s article highlights the range of topics and presenters that will be part of the Applied Research to Practice group, the second track that will be presented on Friday, Oct. 28.

This year’s Applied Autism Research and Intervention Conference will be held on Fri., Oct. 28, and Sat., Oct. 29 at the Hilton Towers in Arlington, Va. The Conference will feature presentations and workshops by top autism professionals, leading researchers and experts on various subjects related to education and intervention across the lifespan. These 27 professionals will be presenting on various subjects within the following four tracks: Current Research, Research to Practice, Autism, and High Functioning Autism/Asperger Syndrome.

The conference breaks to tracks on Friday allowing attendees to choose between presentations focused on Current Research or Research to Practice. Saturday’s presentations will feature the Autism, and High Functioning Autism/Asperger Syndrome tracks. The Conference tracks allow for a greater focus in an area of interest while connecting those with similar interests. The Applied Research to Practice track will be more practically focused with presentations that discuss the implications of research on current treatment and intervention practices.

“Having a focused applied research track like this is an exciting addition to the conference,” said Allison Chance, OAR Development Associate. “It will focus on daily needs, life quality, and general daily concerns of those touched by autism.”

The Applied Research to Practice track is aimed at parents, educators, family members and caretakers as well as autism professionals with an interest in the implications of recent research on current treatment and intervention practices. It will feature eight autism professionals from across the country speaking on topics ranging from language acquisition, staff training, successful behavioral consultations, common treatment mistakes and special needs in the emergency room.

Featured presenters include OAR Scientific Council member, Joanne Gerenser, Ph.D. Dr. Gerenser is the Executive Director of Eden II, a facility located in Staten Island, NY that offers programs for individuals with autism across the lifespan. Having received a Master’s Degree in Speech-Language Pathology and her Ph.D. in Speech and Hearing Sciences, the focus of Dr. Gerenser’s research is on language acquisition and disorders in children with autism. She has presented on these and other topics both nationally and internationally. At the conference Dr. Gerenser will be presenting ways to enhance language acquisition in children with autism.

In addition, a team of autism professionals from Ivymount, a special education day-school located in Rockville, Md., will be presenting "A Model for Training Staff to be successful instructors in an ABA Autism Program." The Ivymount team includes Tamara J. Marder, Ph.D., Co-Director, Susan Holt, Co-Director and Carrie Clark, M.Ed., Autism Training Coordinator. They have a total of more than 27 years experience in developmental disabilities and will be providing attendees with an experience-based model for preparing staff to be successful educators in an Applied Behavior Analysis program for learners with autism.

Another team of presenters, Linda S. Meyer, Ed.D., MPA and Jane Barbin, Ph.D., BCBA will be giving a presentation entitled "Behavioral Consultation for Individuals with ASD: Factors Related to Success." Dr. Barbin and Dr. Meyer are both consultants providing services to individuals with autism. Dr. Meyer is the co-founder of the Alpine Learning Group, Inc. and served as its Executive Director from 1989-July, 2005. She currently serves on the professional advisory boards of several schools and agencies serving individuals with autism. Dr. Barbin was the founding director of the Ivymount Autism Program in Rockville, Md. and has worked extensively with individuals with behavior disorders. Dr. Meyer and Dr. Barbin have presented at regional, national, and international conferences and bring a broad range of autism experience to this year’s Conference.

While Dr. Meyer and Dr. Barbin will be presenting on successful behavioral consultation, Bobby Newman, Ph.D., BCBA, will be presenting on how to avoid common treatment mistakes for people with ASD. Dr. Newman is currently the Director of Training and Research at the Association in Manhattan for Autistic Children and serves as Staff Psychologist and Behavior Analyst at Effective Interventions, Inc., in Levittown, NY. Dr. Newman has authored and co-authored more than fifty books and articles on Applied Behavior Analysis and presented at conferences nationally and internationally on the subject.

The last presentation in the Research to Practice track will be given by Michael S. Londner MD, MPH, MBA, FACEP. Dr. Londner, who will be presenting on special needs scenarios in the emergency department, is also a member of OAR’s Scientific Council and currently serves as the Director of Clinical Operations at Johns Hopkins University Department of Emergency Medicine in Baltimore, Md. In addition to a number of articles and book chapters on emergency medicine, Dr. Londner has presented on various topics both nationally and internationally.

Next month’s spotlight will turn to Saturday, Oct. 29, and highlight the all-day Autism track. For a detailed conference schedule and complete list of speakers, visit OAR’s Conference website, or contact Caitlin McBrair at (703) 351-5031 or by email.

Annual President’s Dinner Proceeds Bolster OAR Programs

An autism benefit dinner and auction hosted by OAR President Jim Sack on June 13 raised more than $60,000 for OAR’s research and information programs.

The fourth annual event drew over 100 people at Da Domenico Ristorante in Tyson’s Corner, Va., where attendees enjoyed an evening of cocktails, a delicious meal, then bid generously in a live auction for prizes including week-long trips to Bermuda and Hilton Head, S.C. and weekend get-aways to Marriott resorts in Houston and Lima, Peru.

Mr. Sack said the event is generously supported by his friends and business associates every year. “They know that I have two children with autism, and they appreciate the work that OAR does,” he said. “But the evening seems more a celebration of friendship than a fundraising event. That means as much to me as anything.”

The President’s Dinner has raised almost $250,000 in the past four years. Proceeds from this event will support OAR’s research and autism information programs.

Jae Davis Memorial Award Nomination Deadline

OAR is now accepting nominations for the second annual Jae Davis Memorial Award for Community Service. The deadline is Sept. 1, 2005.

OAR is seeking nominations for those individuals whose personal contributions to the autism community have had significant and positive impact on children and adults with autism and their families; much like the late autism advocate Jae Davis. Nominations are welcome from the autism community throughout the country, and may come from anyone familiar with the nominee’s accomplishments.

To nominate an individual for this award, please send OAR a letter with a brief description of the nominee as well as his/her special qualifications and accomplishments. Nominations should also include two letters of support from non-family members. Letters should not exceed two pages in length and must include full contact information.

The winner will be notified during September, 2005 and receive the award at the OAR conference in October. For more information, please contact Caitlin McBrair by email or at 703-351-5031.

Special Section: RUN FOR AUTISM RUN FOR AUTISM Fills Up, Gets New Look In 2005, the RUN FOR AUTISM continues to grow and set new records. With 170 runners signed up to run the Marine Corps Marathon™ (MCM) for OAR this year, the RUN FOR AUTISM - Washington, DC team is almost full for the first time in the event’s history. Only five spots remain. This year’s team includes several return runners, as well as parents, siblings, and friends of individuals affected by autism. “It’s very exciting to see this program grow,” said Allison Chance, a Development Associate at OAR and coordinator of the RUN FOR AUTISM program. “This is the largest team of runners we have ever had, which we hope translates to a new record in fundraising. Our goal is to raise more funds this year than the previous two years combined.” OAR became the first autism organization to be accepted as an official Charity Partner in the MCM in 2003 when the organization launched the RUN FOR AUTISM program. Since then, OAR has recruited more than 200 people from across the country to participate. Now in its third year, the RUN FOR AUTISM – Washington, DC raises funds for OAR and strengthens public awareness of autism. It is OAR’s biggest event raising over $250,000 for new autism research in two years and contributing directly to 10 new funded research studies since 2003. Along with the MCM, OAR is also partnering with the LaSalle Bank Chicago Marathon® as part of this year’s RUN FOR AUTISM. This second venue further expands the program, taking it into the mid-West. It allows more people the opportunity to participate and opens the door to raising awareness of autism around the country. In addition to the two official RUN FOR AUTISM races, OAR introduced a nationwide RUN program last year that allows individuals to take part in local events and dedicate their efforts to OAR and autism research, and has eight runners in this category training for races from 5K to 26.2 miles all around the country. Due to the extended reach of the RUN, OAR has also adopted a new logo for the RUN FOR AUTISM that better reflects the national scope of the program. This new logo, pictured above, incorporates OAR’s signature colors while preserving the look and feel of the original. “The original RUN FOR AUTISM logo was created in 2003, when OAR first became a Charity Partner with the MCM, and it was geared toward that single event, depicting the Marine Corps War Memorial in the background,” Ms. Chance said. “Now that the RUN includes the Chicago Marathon and running events in other places, we needed a logo that was more representative of the program as a whole.” OAR only has five more spots available for the MCM and is maintaining a “Waiting List” because there are always a few scratches due to training injuries. With the Chicago Marathon now closed, the only way to run there is through OAR or another charity. OAR spots in the Chicago Marathon are still available. If you are interested in running for OAR, please contact Allison Chance at (703) 351-5031, or send her an email. RUN FOR AUTISM STATS 170 MCM runners 81 Chicago Marathon runners 20 returning MCM runners; 7 previous MCM participants in Chicago Marathon Total funds raised so far: $85,787.00 OAR’s Goal: $200,000 Runner Profile: Marines Reunite and RUN FOR AUTISM Marine Officer Tom Egan had always planned to run in the Marine Corps Marathon (MCM) in Washington, DC. He intended to reunite with a few friends from his former training unit beforehand and catch up during the race. It wasn’t until later that he decided to dedicate his efforts to autism. Several months ago, Egan learned that his childhood friend, Maurice Dunne, was personally affected by the disorder. Dunne’s daughter, Kati, was diagnosed with autism at the age of five. In an effort to show his support, Egan looked for a way to get involved with the autism cause. When he discovered that OAR was a Charity Partner with the MCM, he felt that “it all just clicked.” “It seemed to be a way I could express to [the Dunnes] my support for what they were going through,” Egan said. When Egan and his Marine Corps friends were in Officer Candidates School together the group was known as the “Do-it-again Deltas.” Their commanding officer was never satisfied and they always had to repeat exercises over and over together as a unit. So of course after he told the rest of the Deltas he was running for autism to support the Dunne family, they felt that they should all do it together, again. “We all want to run together, have good conversations along the way and raise some money for autism,” Egan explained. He plans to run alongside Marines Chip Goodwyn and Joe Golanka. Patrick Griffin, another Do-it-again Delta, also hopes to run but may not be able to due to a heel injury. Mr. Dunne will run with the Deltas as well. Some of the Deltas have never met Maurice Dunne but are nevertheless running to support his family and raise money for autism research. The Dunnes are touched by the gesture. “It’s very moving,” said Dunne. “These guys could have run for personal glory in the Marine Corps Marathon and they chose not to. They chose to run for my family and the disorder that is making our lives so difficult.” In addition to running for autism, Egan has also set up a fundraising website, where he hopes to raise $10,000 to go towards autism research. “People have been responding positively to what we are doing,” Egan said. So far the Do-it-again Deltas have raised close to $1,000. To pledge support for the Do-it-again Deltas’ RUN FOR AUTISM, please visit their website.

RESOURCE

Safety Tips for Families

Note to readers: In each issue of The OARacle, we provide a helpful resource on a topic of interest within the autism community. This month's article focuses on safety tips for families affected by autism. Special thanks to Janet Fernandez, who works with the police forces in Sacramento, Calif. to investigate cases of abuse, for her contribution.

Protecting our children is the most important job of parents. For families of children with autism, this task is even more challenging because children with ASDs are often not as sophisticated as their age group peers. It is important for parents to always be aware of actions by others that may lead to abuse of their children as well as possible dangers to their children and know how to prepare them to avoid risky situations.

Grooming
“Grooming” is a predatory behavior and a strong indicator of criminal activity. The practice consists of slowly “preparing” an individual to comply with acts that would be less agreeable or totally unacceptable under any other circumstances. Grooming is generally accompanied by coercion, manipulation, undue influence, and a series of small “rewards” or low-level threats. These threats, all too often, will eventually outweigh or replace the minor incentives, resulting in an ongoing pattern of victimization.

It is imperative for family to teach children to understand and recognize differences between “behavior modification techniques” (which may ultimately prove beneficial in general social and family interactions) and “grooming” (which leads to abuse and benefits only the abuser to any significant degree). These differences are often very subtle.

Power and control (and the isolation necessary to exert them effectively) are the tools used in grooming and exploitation. Power and control may translate into offering or giving small gifts or tokens (that may represent larger “social currency”) — sharing a soda, a meal, or even providing alcohol or illegal street drugs. These gifts are meant to produce a temporary feeling of increased self-worth and importance on a personal and social level, which is then often followed by and replaced with a demand for control, money, sex or personal property.

Unlike family, teachers, staff, and law enforcement, abusers don’t worry about disabilities or behavioral or cognitive deficits. They won’t ostracize our adolescent and adult children for “being childlike” or judge them as “unlikely to be interested in” illegal activities or illicit sexual acts because of their “mental age.” These are, in fact, the very attributes that will make them attractive, vulnerable targets for victimization.

Life is messy
As distasteful as we all find the “terrible two’s” and “teens” to be we must remember that those are critical times for developing personal empowerment skills. Those messy moments of trial and error (and the consequences that follow) become the “practice sessions” that will ultimately help our children or adult clients to form and implement personal values and social judgment.

Knowledge is power. Arm your children, your students, and your clients with information and personal power. This will ensure that they become less accepting of manipulation, control, and “bribery,” even if it makes them more aware of (and, perhaps, resistant to) behavior modification techniques. Allow them to be partners in developing appropriate family and social interactive communication and skills.

“No!”
Our minor AND adult children may hear this word frequently, but they don’t - often enough - use it themselves very successfully. This little word (in addition to the word “yes”) is the strongest word in any vocabulary and forms the very cornerstone of a system of personal safety and protection. Use it. Teach it. Practice it. Accept it.

Recent budget cuts across the country will seriously impact staffing and services in your local area. It is more important than ever to report crimes in a timely manner and advocate for your child’s civil rights, personal dignity, and safety.

There are three populations recognized as being especially vulnerable:

1) Children

2) Dependent Adults and

3) Elders

Crimes committed against these individuals carry enhanced penalties under the law and should be reported immediately to the proper authorities. If you would like to report an incident of suspected abuse against such an individual, you may contact the following:

24-Hour Law Enforcement, Fire, & Ambulance - 911

Childhelp USA® National Child Abuse Hotline- 1-800-4-A-CHILD® (1-800-422-4453)

Poison Control - 800-876-4766

**To find an agency in your state that handles adult abuse reports or mental health crises, please visit your state government Web site.

This article was originally printed in the spring 2005 edition of the Families for Early Autism Treatment (FEAT) newsletter in Northern California. Permission to reprint the article was granted by FEAT.

Janet Fernandez is the parent of an adult son with developmental disabilities, and is a child advocate in Sacramento, California. She serves as a victim advocate and crime victims with disabilities specialist through the Sacramento Police Department. In this position, she assists law enforcement personnel in handling cases involving crime victims with disabilities. For the past 25 years, she has helped hundreds of parents at IEP meetings throughout California and has taught adults with disabilities about issues such as boundaries, personal safety and reproductive health.

EVENTS

Applied Autism Research and Intervention Conference
The Hilton Towers, 950 North Stafford Street, Arlington, Va. 22203
Friday, October 28 – Saturday, October 29, 2005

For a list of speakers, the schedule, and information on registration, please visit our website

Disabilities Awareness Nights at Major/Minor League Baseball Events!

Disabilities awareness nights are opportunities for families of children with disabilities in the Washington, DC area to enjoy an evening at the ballpark. Guests are invited to three different major/minor league baseball games this summer where the theme of the day will be disability awareness. The events are sponsored by Exceptional Parent magazine, Mass Mutual partnership as well as the other organizations listed below with the schedule and contact information. Admission to all games is FREE!

July 31 at Potomac Nationals Field in Woodbridge, Va. sponsored by the Washington Group. For tickets and more information, please contact Beth Oravec, The Washington Group at 301-581-7236 send her an email.
August 14 at Frederick Key’s Field in Frederick, Md. sponsored by Capitol Financial Partners. For tickets and more information, please contact Debbie Bryant, Capitol Financial Partners 703-847-9660 or send her an email.
August 21 at Bowie Baysox Field in Bowie, Md. sponsored by the West Financial Group. For tickets and more information, please contact Jenny Bignell, West Financial Group at 301-941-9123 or send her an email.

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

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. Or if you prefer, please send us your donation to the address below. Donations are fully tax-deductible. Thank you for your support!

OAR is a nonprofit organization established in accordance with section 501(c)(3) of the IRS Code and is incorporated in the Commonwealth of Virginia (EIN#54-2062167). As provided for under the laws of the Commonwealth of Virginia, copies of OAR's financial statements are available upon request form the State Division of Consumer Affairs in the Department of Agriculture and Consumer Services in Richmond, VA.

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Organization for Autism Research
2111 Wilson Boulevard, Suite 600
Arlington, VA 22201
(703) 351-5031