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| The OARacle | |
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The Monthly E-Newsletter of the Organization for Autism
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November 2003
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| OAR Executive Director Mike Maloney |
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Support and Planning Move OAR Forward
October was a landmark month for OAR. In a span of four days, we held the inaugural meeting of our Scientific Council, hosted the first Applied Autism Research and Intervention Conference discussed later in this newsletter, conducted the second annual meeting of the Board of Directors, and capped it off with the RUN FOR AUTISM that was described in pictures and words in last month’s issue of The OARacle. These events were the culmination of the efforts of many people going back to OAR’s founding in December 2001. Their success brings a strong sense of accomplishment. At the same time, it sets a standard for OAR and raises the bar in terms of future expectations. It was with this in mind that both the Scientific Council and the Board met to set the plan for OAR in the months and years to come.
It wasn’t just bringing the members of the Scientific Council together that made the meeting interesting. For several members it was their first opportunity to meet their fellow Council members in person. It was also the first chance for Council Chairman Peter Gerhardt and me to discuss OAR’s mission, research programs and vision with them and more fully engage them as members of the Council. OAR sees its Scientific Council as more than a professional review panel for the annual research competition. The Council and its members are key advisors to OAR’s Board and play a central role in evaluating and shaping our research programs. The Council members welcomed the active advisory role OAR envisions.
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Make Special Holiday Gifts for Autism Research December is the last month to make a donation for 2003 tax purposes. If you’re not already one of OAR’s 2003 donors, please consider making a donation today. Your donation will be used to support the programs described in this newsletter and on OAR’s website. You can donate online via the website or by sending a check made payable to: OAR, 2111 Wilson Blvd., Ste. 600, Arlington, VA 22201. OAR welcomes donor’s inquiries about its programs and finances. Please address your questions to OAR’s Executive Director, Mike Maloney, at the above address, by e-mail or by phone (703-351-5031). |
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In that vein, they reviewed the current procedures for the annual research competition, discussed ways to reach more prospective researchers and further enhance the application as well as the review process, and identified research expertise desired for the Council and several prospective candidates with the requisite background. They also emphasized the importance of stressing “meaningful outcomes” as a key evaluation criterion for any proposal to be funded and requiring researchers to submit post-study reports and publish results in professional journals. As reported below, we’ve already added a new member to the Council. We will incorporate the refinements to the research competition in 2004.
The Applied Autism Research and Intervention Conference showed the Council members to be excellent speakers who were thoroughly conversant on their topics. This came as no surprise. What stood out to me, however, was seeing the various members of the Council become part of the conference, listening to the other speakers and making themselves accessible to the conference attendees throughout the day. This wasn’t anything we asked them to do. Their actions speak to their interest and the type of people they are.
The Board of Directors took little time in making several decisions about future plans. Based on Dr. Gerhardt’s positive assessment of the conference attendees’, Scientific Council members’ and guest speakers’ responses, the Board decided to make the conference an annual event to be held next October in conjunction with the RUN FOR AUTISM/Marine Corps Marathon. Implicit in that decision was the commitment to continue the RUN FOR AUTISM that was so successful this year.
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In addition to the holidays, December brings end-of-year charitable solicitations. With more than a half-million federally recognized charities including OAR soliciting contributions, chances are you’ll be asked to donate. Here are some tips from the Federal Trade Commission (FTC) to help you give wisely:
In addition to GuideStar mentioned already, you may find information to check out charities you’re considering with the following organizations: BBB Wise Giving Alliance American Institute of Philanthropy Many smaller, newer or local charities may not be listed with the organizations listed here. Some fraternal organizations such as police and fire groups may not be rated at all. If the charity seeking your donation is not listed or rated, follow the tips above and the additional precautions listed under FTC’s Charity Checklist to help you determine whether an organization deserves your donation dollars. Editor’s Note: You will find information about OAR at GuideStar. OAR is not yet listed or rated by the other two organizations. |
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The Board was confident that it would fund four studies ($120,000 in grants) from the ongoing competition beginning on Jan. 1, 2004, assuming the studies meet the Council’s review criteria. Beyond that, the Board reiterated that its research interest extends to autism, Asperger Syndrome, and related developmental disorders across the life span and discussed a goal to fund six to eight studies ($180,000 to $240,000) in the next annual cycle beginning Jan. 1, 2005.
Pleased with the response to the “Parent’s Guide to Research,” the Board approved the publication of the “Educator’s Guide to Autism” as the second in the series of user-friendly, community-oriented guides to be published by OAR. They also set a goal to publish four guides (including the “Educator’s Guide”) in the next two years. We are already considering a separate “Educator’s Guide to Asperger Syndrome” and will choose the topics for the additional guides in the next 90 days.
So, you can see that the OAR team has an ambitious schedule ahead in the next two years: publish four guides in the Life Journey through Autism series, continue the annual Applied Autism Research and Intervention Conference, host a research competition and fund 10 to 12 research studies ($300,000 to $360,000 in grants), while continuing to raise the necessary funds. The success of the first two years has OAR well positioned for these challenges. At this time next year, just after the next Scientific Council Meeting, the Conference, and the 2004 RUN FOR AUTISM, we’ll pause at the next landmark to measure our progress against these goals. At that time, I fully expect we’ll re-set the bar and get to work for 2005.
With OAR’s second birthday just weeks away in December, I’d be remiss if I didn’t thank everyone who has contributed to OAR’s success to date. There’s no way for me to list everyone or describe what they’ve done to help. Many have donated money. Others have given their time and talent. Most recently, some have run marathons. What’s most important is their belief in our mission and support of our goals. Thank you!
In closing, I wish you all the blessings of the holidays and best wishes for the New Year.
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Federal Summit Focuses on Government scientists, academic researchers, representatives from several autism organizations and 300-400 parents of children with ASD gathered in Washington, D.C. Nov. 19 and 20 for “The Autism Summit Conference, Developing a National Agenda.” The event was co-sponsored by the Departments of Health and Human Services (HHS) and Education (DOE). The event marked the first national conference focusing on the government’s role in autism research since 1995. Tom Insel, M.D., director of the National Institute for Mental Health, served as the Master of Ceremonies. The conference featured general keynote sessions from several public officials, including Tommy Thompson, Secretary of HHS, Dr. Rod Paige, Secretary of Education, and Noel Dempsey, T.D., Ireland’s Minister for Education and Science, who was in the U.S. as part of International Education Week. Congressmen Henry Waxman, Dan Burton, and Dave Weldon also made remarks. Over 30 autism organizations including OAR also exhibited at the two-day conference thanks to the efforts by the Autism Coalition, which organized exhibit space and generously sponsored refreshments and breaks each day during the event. The conference was also an opportunity for parents, government researchers, federal leaders and Members of Congress to listen to presentations organized around three themes: Services for Individuals with Autism across the Life Span, Early Screening and Diagnosis, and Biomedical Research. The federal government and research agencies provided information on three public-private partnerships involving parent groups and showcased a draft of a long-term research strategy by the Interagency Autism Coordinating Committee (IACC). The Autism Society of America presented a plan called the National Early Childhood Developmental Screening Program in conjunction with the Centers for Disease Control aimed at early detection of autism. Another parent-led organization, Cure Autism Now, has entered into a partnership with the National Institute of Mental Health, to create an extensive resource bank of DNA and genetic information on families with one or more child with an ASD. In addition, the National Alliance for Autism Research and the National Institutes of Health announced a $5.2 million alliance for research into the exact cause and improved diagnosis of autism. The IACC’s draft proposal, called the Autism Research Roadmap and Matrix, was designed to include goals and activities for the next 10 years and is divided into short term (1-3 years), mid term (4-6 years) and long term (7-10 years) goals. Goals and activities that comprise the autism research matrix generally fall within the following categories: characterization of autism (i.e. phenotype), screening, early intervention, school and community interventions, specific treatments, neuroscience, environmental factors and epidemiology. The IACC, which was formed in response to the Children’s Health Act of 2000, is made up of key members of federal agencies and invited public members, including ASA and CAN. The IACC is tasked with facilitating the exchange of information among its member agencies and coordinating autism initiatives. The Roadmap was requested by a Congressional appropriations committee and is expected to be presented to Congress early next year.
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First OAR Conference Draws Parents, Professionals
The first Applied Autism Research and Intervention Conference drew parents and professionals to hear presentations on the current state of applied autism research.
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| Ann Wagner, Ph.D. |
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Thanks to the generous support of the Doug Flutie Jr. Foundation for Autism and the Autism Society of America, Northern Virginia chapter, OAR welcomed the autism community to its first-ever conference on Oct. 24-25. The event also brought in several exhibitors from around the country who showcased products and services for families.
The conference featured presentations by eight members of Scientific Council as well as five guest speakers, fellow educators, academics and practitioners, focused on the theme of Education and Intervention Across the Lifespan. Keynote speaker Ann Wagner, Ph.D., Chief of the Autism and Pervasive Developmental Disorders Intervention Research Program at the National Institute of Mental Health, opened the conference speaking about the state of the science in autism intervention research and the next steps in moving the field ahead. “The NIH is recognizing that autism is an increasing public health concern and is spending money on it,” she said, noting that funding increased from $20 million in 1997 to over $70 million in 2002. “But not enough is happening in intervention research.”
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| Several autism professionals spoke at the conference including some members of the Scientific Council (from left) Peter Gerhardt, Ed.D., Suzanne Letso, M.A., BCBA, Michael Fabrizio, M.A., BCBA, Joanne Gerenser, M.A., CCC-SLP, Robert Sprague, Ph.D., James Mulick, Ph.D., and guest speaker Edward Carr, Ph.D. |
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According to Wagner, the work of the eight STAART (Studies to Advance Autism Research and Treatment) centers, funded by the NIH, is the starting point for further study. What is needed, she said, is multidisciplinary research at all levels, new investigators, better dissemination of scientific evidence and creativity in the methodology and design of studies as well as more private-public partnerships.
The need for research was echoed by Scientific Council Chairman Peter Gerhardt, who delivered a presentation on supporting adults with autism in the community. Limited research has been done on adult issues and as the current population ages, more issues such as employment, housing and social skills need to be studied.
Attendees also heard presentations on a variety of issues including fads and research-based interventions, lexical development and organization in children with ASD, fluency-based teaching, the treatment of problem behavior, ethical considerations in treatment and research, supporting students with Asperger Syndrome and emergency room considerations.
On the second day of the conference, workshops led by autism educators highlighted the success of autism programs. The directors of schools for individuals with autism offered their views on the essential components of an ABA program, healthy lifestyles for individuals with ASD, and strategies for promoting speech and language. The afternoon program featured workshops on the social inclusion of children with autism in the general education classroom and bridges to adulthood for learners with autism and related disorders followed by an Educators’ Panel.
Based on the positive response by attendees and speakers, OAR’s Board of Directors decided to make the conference an annual event. OAR plans to host the second annual Applied Autism Research and Intervention Conference on October 29-30, 2004, in Arlington, Va. Please look for more information in future issues of The OARacle.
Friends Make Gift to Fund Research
After meeting the members of the Scientific Council, exchanging ideas with them and hearing them speak during the Applied Autism Research and Intervention Conference last month, OAR Vice President Madeline Millman and her husband, Arthur, were inspired to help increase research opportunities. The couple, grandparents of a child with autism, were so impressed that they immediately decided to donate $15,000 to co-sponsor one of OAR’s new research studies and then invited their close friends, Mike and Pepi Kahn, to do the same. This combined donation is the first OAR has received to fully sponsor one of its studies.
“We were so impressed with the Scientific Council and the conference. It brought together all the people who have been working to build OAR over the past two years, and it was exciting to be there to see some of our ideas for OAR take form. I knew from our Board meeting that the number of studies we would fund Jan. 1, was dependent on OAR’s funds,” said Millman. “The Kahns, Arthur and I are thrilled that our separately funding a study will enable OAR to support an extra study this year.”
OAR’s annual research competition is in its final stages with 11 proposals currently under final review by the Scientific Council. OAR plans to award up to four one-year grants of up to $30,000 each for research in the analysis, evaluation, or comparison of assessment or treatment models on applied aspects of early education, behavioral or communication intervention and on adult issues such as continuing education, employment, housing models and "later intervention." Initial scoring is complete. The Council members will make the final selections at a teleconference early next month. Those studies judged most outstanding and worthy of funding will be referred to OAR’s Board of Directors for final approval.
At that time, OAR will invite the Millmans and Kahns to select the study of greatest interest to them for their sponsorship. Funding for the studies will commence Jan. 1, 2004. Results from the competition will be announced in the next issue of The OARacle.
“This is a most significant gift under any circumstances because it is directed toward the heart of OAR’s mission," said OAR’s President Jim Sack. "What places it on an even higher level of importance is what it says about the commitment and interest of OAR’s leaders, their family and friends. It’s a nice coincidence that in this month of Thanksgiving, OAR gives thanks to the Millmans and the Kahns for this very special gift.”
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Parents and Teachers Needed OAR is seeking input from parents and teachers as a critical first step in creating “Life Journey through Autism: An Educator’s Guide to Autism,” the second in our planned series of community issue-oriented guides. Interested persons will be asked to participate in a short e-mail survey. The responses will help identify the most pressing issues that the “Educator’s Guide to Autism” should address. OAR will work in partnership with Danya International, a Maryland-based public health consulting firm that played a key role in producing the first guidebook, “Life Journey through Autism: A Parent’s Guide to Research.” OAR has distributed more than 1,000 copies this year at no cost to parents, teachers, and other front-line persons and professionals who teach, treat, or live with children and adults with autism. The "Educator’s Guide" will be supported in part by a $20,000 grant from the Milbank Foundation for Rehabilitation in New York. The grant is the first from the Milbank Foundation, which supports organizations assisting people with disabilities. The upcoming "Educator’s Guide" will be specifically targeted at teachers, school administrators and others who work with persons with autism spectrum disorders in a public or private pre-school, elementary or secondary educational program. The Guide will feature an overview of ASD and easy-to-understand descriptions about symptoms and the typical behaviors associated with each disorder. Educators will be able to quickly access information about teaching methods that help students with ASD learn, socialize and generalize their experiences in school. The Guide will also address critical issues such as the development of an individualized education plan (IEP), the role of special educators and the importance of establishing a collaborative relationship with parents. In addition, the publication will include a list of resources for educators. Feedback from parents and teachers is vital to the final outline of the “Educator’s Guide.” The eight-question survey seeks responses on the challenges of achieving inclusion in the classroom for children with autism, current resources available to educators and the most important topics that should be included in the Guide. OAR is also planning to publish a companion guide for parents along with the “Educator’s Guide.” The publication will cover educational priorities for teachers and classrooms, proven methods for social inclusion, legal issues in education and creating a partnership with schools. The input from parents will shape the companion piece as well. Like the "Parent’s Guide," the "Educator’s Guide" will be published in printed form and will ultimately be available on the OAR website in downloadable form. OAR plans to distribute the “Educator’s Guide” in the summer of 2004 for introduction and use during the 2004-05 school year. OAR plans to broadcast the survey to all readers of The OARacle during December, and thanks in advance all those who are able to respond. |
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ShopKo Awards Grant for "Parent’s Guide to Research"
ShopKo Stores, a leading retail chain in the mid-west, has just awarded OAR $10,000 to support the publication and distribution of “Life Journey through Autism: A Parent’s Guide to Research" to families, autism organizations and agencies that support families in Wisconsin. The grant was made at the recommendation of six ShopKo employees, including OAR Board Member Bob Segal of Green Bay, Wis., who had received the Guide and believed it would be a useful resource for other families. ShopKo has an outstanding record of support for charities and service to the communities where their stores are located.
OAR has copies of the Guide available from its initial printing to support current distribution. As a result, a substantial portion of the ShopKo grant will be used to publish an updated version with families in Wisconsin as the initial recipients.
To receive a complimentary copy of the “Parent’s Guide to Research” or for more information on the program to distribute it in Wisconsin, please contact OAR staff via e-mail or phone, (703) 351-5031.
UNT Professor Joins Scientific Council
Entertaining Other Voices VII Show Brings Out a Crowd
Supporters of autism research and a women’s theatrical organization came out to show support at an annual joint benefit event on Nov. 10.
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| Melba Moore singing with her band |
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Together with Shotgun Productions, a nonprofit theatrical production company committed to developing new works by emerging women artists, OAR raised $55,000 from the concert. Broadway star Melba Moore, backed by her exceptional jazz band, headlined the event and took the audience along on a biographical tour of her life marked by song. Moore first appeared on Broadway in the musical Hair and immediately followed that success with her Tony Award-winning performance in Purlie. She is best known for her performance on Broadway as Fantine in Les Misérables and as a Grammy-nominated R&B recording artist.
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| OAR Committee Member and Other Voices Co-Founder John Maltby |
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For the fourth time in a row, the event was held at Carolines on Broadway, a comedy club located in the heart of Times Square in New York City. And for the first time in its history, Other Voices had two co-sponsors, DKR Capital and Deutsche Bank. Additional sponsors included Goldman Sachs, Bear Stearns, Jaspan Schlesinger Hoffman LLP, Lehman Brothers, Cable Audit Associates and Steps Studio, Inc.
“This year’s show is the best we’ve had from start to finish,” said John Maltby, OAR committee member and the father of an adult son with autism who co-founded the event along with his wife, Jan, eight years ago. “We’re grateful to the sponsors and attendees for their support, the leadership of our co-chairs, Lori Lapin Jones and Joan Paraszczuk, Stewart Schulman, who has directed all seven shows, Christine Nagy from Z-100.3 FM in New York and our guest host for the past three years, and our partners at Shotgun Productions. Well done and thanks to all.”
Holiday Survival Guide for Children With ASD
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 tips for parents on helping their children through the stress on the holidays. Special thanks to Liane Holliday Willey, a woman with Asperger Syndrome who is also a mother, wife and author of several books on Asperger Syndrome, for her contribution.
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| Liane Holliday Willey, Ed.D. |
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Few events appeal to the romantic in me more than the holiday season. With little effort I can set my imagination free to fancy sumptuous dinners shared with old and new friends, guilt-free shopping excursions, and quiet moments reflecting on the reason for the season. Of course I'm only dreaming.
Truth be told, facing the holiday season is a bit analogous to having a root canal! My stomach lurches, my serenity goes on strike, and every one of my senses shriek. And trust me, this is progress! I'm now an adult - a wife and mother, well beyond my most challenging Asperger years. I look at my young Aspie friends and my palms sweat at the thought of what they will face over the coming weeks, unless of course, I come up with a way for us to enjoy and celebrate the season. I think I can, I think I can, I think I can!
After reflecting on the rush and clamor of the holiday season, it occurred to me that there are three basic problem areas that cause the most difficulty for many of us with Asperger Syndrome and other autism spectrum disorders. It seems sensory overload, disruptions to routines, and social demands are the "Big Three" that continually sabotage our holidays. So, putting pen to paper, I designed the following plan which I am confident will help us cope better than we ever have before.
One: Mitigate Sensory Overload
Those seasonal sensory stressors! Among them are classrooms and
public areas laden with loud music, busy crowds and long lines,
twitching lights and decorations, heavy smells and a myriad of taste
treats. Parents can make a conscious effort to reduce sensory commotion
by:
When children with ASD feel overwhelmed, they should learn to use an agreed upon "I need help" code word with a responsible adult. The adult will then provide a means of helping the child de-stress by:
Don’t forget about home stressors too. Parents can do the following to avoid problems:
Two: Maintain Routines and Order
Amid the clatter and chaos, children with ASD need their oasis - a
sense of order to get them through the madness. The following will help
parents AND children maintain their equilibrium:
Three: Prepare for Seasonal Social Situations
The social demands of the holiday season are like no other! From
our AS perspective, you need the social flexibility of a human pretzel
to travel the maze of social challenges. Hopefully, the following plan
will make our kids feel more comfortable at social gatherings.
During the holidays, I have vowed that I will join our whole family in embracing the festivities with peace and joy and awe-inspiring wonder. I know that there are no absolutes, and that what works one day, may have little effect the next, but I've taken that first and most important step. This year, I have a plan!
Other Holiday Hints
Liane Holliday Willey, Ed.D., is an internationally-known speaker and writer on Asperger Syndrome and a researcher who specializes in the fields of psycholinguistics and learning style differences. She is the author of Pretending to be Normal: Living with Asperger's Syndrome and Asperger Syndrome in the Family: Redefining Normal as well as the editor of Asperger Syndrome in the Adolescent Years: Living with the Ups, the Downs and Things in Between. For more information about her, please visit her website.
Capital Autism Golf Classic 2004
The Piedmont Club, Haymarket, VA
Monday, April 26, 2004
Mark your calendars for April 26, 2004, and please join us for the Capital Autism Golf Classic at the Piedmont Club, one of the best-conditioned courses in Northern Virginia. The course is located in the heart of Virginia’s Civil War country and was created by famed golf designer Tom Fazio, known for designing golf courses with generous fairways and medium-sized subtle greens. Reserve a spot at this all-day event where you’ll play a challenging course, compete for team and individual prizes and support a worthy cause. Proceeds from the event will support research and information programs that will provide practical answers to individuals with autism and their families.
For more information or to purchase tickets, please contact Mike Maloney by e-mail or phone, (703) 351-5031.
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 website. 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, a copy of OAR's financial statement is 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
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