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

August 2003

Guest Feature: Unlocking Autism’s Jeana Smith on the Importance of Applied Research

When I first began my journey with autism six years ago, I was shocked at the scarcity of resources for parents of children newly diagnosed with autism. Like many, my husband Darrell and I repeatedly pursued doctors for an explanation of the startling new behavior patterns that our son Jacob began to exhibit before the age of two. While his identical twin Jesse continued to develop normally, Jacob’s language and communications skills deteriorated. In 1997, when he was three, a doctor finally told me in a packed waiting room full of other parents that Jacob was likely to have autism. The doctor did not give me any resources but instead told me that Darrell and I should begin looking for a facility for our son because he would have to be institutionalized by the age of six.

Jeana Smith's son, Jacob

With Jesse demonstrating to us the potential Jacob had each day, we chose not to give in to the notion that our child did not have a bright future. So we jumped into the world of autism with both feet. We began to search for any and every treatment for Jacob and, during the process, we met many other parents in similar circumstances. Nearly two years after Jacob’s diagnosis, in 1999, Shelley Reynolds and Nancy Cale, and I launched Unlocking Autism to draw national attention to autism and assist parents of newly diagnosed children nationwide seeking support and resources. We have worked to raise awareness by participating in autism rallies held in the nation’s capital, testified before Congress, set up a national call center and established a network of 175 state representatives.

Yet our work, and the efforts of our fellow autism organizations, is far from over. Each day, parents across the country face the challenge of explaining the need for a treatment or educational therapy for their child to teachers and school administrators, many of whom know little about autism, Asperger Syndrome, and other developmental disorders. Through my experiences, I realized early on that information is the best tool with which to arm a parent. In that vein, applied research is potentially one of the richest sources of information, the practical information that we parents need. Studies such as those funded by OAR can help us immensely by further substantiating the efficacy of treatments and interventions that work for many of our kids. Conversely, it will also help identify some that don’t work or are only marginally successful. We at Unlocking Autism believe that applied research will help give parents the answers they need to help their child today.

I frequently hear about the frustration of parents seeking a treatment that will work for their child. We all know that what is effective for one child with an autism spectrum disorder may not work for another. Research is critical to finding the tools that will help a variety of children on the spectrum.

With the skyrocketing rates of autism, our quest for answers continues. Helping to support applied research will ensure a brighter future for our children. Today, 8-year-old Jacob is in a mainstream third-grade classroom. Without research proving the effectiveness of the therapies we used with him, that progress may not have been possible. Unlocking Autism applauds what OAR has done in just a year and one-half. OAR’s work is important to all of us who strive to unlock the mysteries of autism and give our children the best opportunities to fulfill their unique potential.

As parents, we constantly prepare our children to function in the “real world,” one in which we will not always be there to guide and protect them. For children with autism, this preparation starts at a young age. As they become adults, our children should have choices when it comes to employment or housing. By funding studies on the needs of individuals with autism throughout the lifespan, we can give our children the tools they need to become productive citizens.

Unfortunately, many parents do not hear enough about the value of applied research and how it can benefit their families. As we cope with the demands of our daily lives, we often lack the time to find out about research that may help our children. However we must seek out that information through organizations like OAR. Applied research gives parents the tangible resources that we have been seeking since our children’s diagnosis and continue to search for throughout their lifetime.

Jeana Smith is Executive Director of Unlocking Autism. For more information about the organization, please visit its website.

Welcome New OAR Staff Members Sarah Snow OAR takes great pleasure in welcoming Sarah Courtney Snow and Nicole Fidler as the newest additions to the growing OAR team. Taking over some of the duties of Ellen Maidman-Tanner, OAR’s former Director of Programs and Development, Snow and Fidler will concentrate initially on the upcoming Applied Research and Intervention Conference and the RUN FOR AUTISM. Following the events, their duties will include both fundraising and programs activities. A recent Phi Beta Kappa graduate from the University of Oklahoma in Norman Okla., Snow received a Bachelor’s degree in psychology. At the University of Oklahoma, Snow served in a variety of positions involving psychology including work as a research assistant, crisis hotline counselor and student assistant at a psychiatric hospital. Originally born in Alexandria, Va., Snow returned to the same Washington D.C. suburb with her husband Paul to work for OAR. Snow, who began working for OAR on Aug. 25, said she is excited to work at an organization whose mission focuses on applied research. “I like that we are working on initiatives that will help people today,” she said. “I’m looking forward to working with the autism community and becoming an integral part of the organization.” Fidler, who will be joining us next month, is a 2001 graduate of La Salle University in Philadelphia, Pa. where she majored in English. Nicole spent the last 15 months in Japan teaching English as a second language to Japanese speakers ages 3 to adult. Fidler will join OAR on Sept. 8. Please look for an article about her in the next newsletter.

News

OAR Marks End of First Full Fiscal Year

June 30 marked the end of OAR’s first complete fiscal year. Continuing to build on the success of its first six months, OAR finished the 12-month period with net assets of more than $160,000, an increase of $100,000 over the previous fiscal year. OAR has already earmarked the majority of these funds for the upcoming conference and applied research studies to be funded in the next 12 months.

OAR’s total revenues for the fiscal year were $388,786; expenses totaled $285,308. Proceeds from several special events including the President’s Dinner in May, last fall’s Other Voices and the upcoming RUN FOR AUTISM raised over $150,000 while contributions from board members, major gifts, honor/memorials and general donations brought in over $110,000. OAR also received $59,000 in grants and, thanks to grassroots support from members of the autism community, received $37,000 from events hosted by local organizations, who contributed some or all of their proceeds to OAR.

Those revenues allowed OAR to continue to expand its research and information programs. During the 2003 fiscal year, OAR introduced its monthly e-newsletter, The OARacle, published the “Parent’s Guide to Research” and distributed it at no cost to more than 1,000 parents, awarded two $30,000 grants and became the first autism organization to be chosen as a charity partner in the Marine Corps Marathon. In the next year, OAR will continue to build its donor base, produce an "Educator’s Guide to Autism," the second in the series of Guides, and host the first Applied Research and Intervention Conference and first annual RUN FOR AUTISM.

The official audit is in progress and is expected to be completed by next month. Results will be announced in the next issue of The OARacle.

Participants Needed for Research Projects

Investigators from two of the nation’s leading research centers have contacted OAR seeking to find participants in ongoing research projects.

A team from the Kennedy Krieger Institute’s Center for Autism and Related Disorders (CARD) in Baltimore, led by CARD researcher Dr. Rebecca Landa, is conducting research on the early detection of autism spectrum disorders. The study, funded by the National Institute of Mental Health, involves younger siblings of children with autism and the examination of the earliest signs and symptoms of autism spectrum disorders. The Center is seeking volunteers in three age groups:

• children 18 months or younger who are late talkers, but have no family history of autism;
• baby siblings under 14 months who have older siblings with autism; and
• typically developing infants who are six months old.

The Center is also recruiting toddlers with autism between 18 to 27 months in age for a treatment study, which will be examining classroom-based intervention strategies for toddlers with autism. Parents interested in learning more about the study may contact Dr. Landa's team through email or by calling the toll free number at 877-850-3372.

At the University of Texas at Austin, a team of researchers is recruiting parents of children with autism to participate in a survey about current treatments. This study is not confined to Texas. Parents from across the country are welcome to participate.

The short online survey is aimed at gathering information on the current and past use of treatments, therapies and programs used by parents. Answers can be submitted anonymously and will be used to provide information on treatments employed by parents, according to the project co-researcher, Jeff Sigafoos, Ph.D., professor at the University’s Department of Special Education. Volunteers are also needed to participate in follow-up interviews, which will be conducted by phone or e-mail. The data will be used to gather information about parents’ decision-making process in choosing a treatment for their child, Sigafoos added.

The Institutional Review Board at the University of Texas has approved the project, which is being conducted jointly by the University’s departments of Educational Psychology and Special Education. Those participating will be required to fill out a brief consent form before answering questions. To find out more about the survey, click here.

Special Section: RUN FOR AUTISM BREAKING NEWS! 66 Marathoners to RUN FOR AUTISM Since January 2003 when OAR officially became a Charity Partner with the Marine Corps Marathon, we have been actively recruiting runners both within the autism community and through various runners’ forums. The results of that effort were evident on Aug. 8 when OAR turned in 66 entry forms for the 26-mile race. OAR thanks and salutes each of our partner organizations and runners, many of whom are taking on their first marathon to RUN FOR AUTISM. OAR’s initial goal was to have 100 Runners for Autism in the Nation’s Capital on Sun., Oct. 26. With 66 marathoners, OAR expects to reach that goal by having runners in the Marine Corps Marathon’s 5K Race to be held the same day. “We’ve already got 20 or more runners in the 5K,” reported Mike Maloney, OAR’s Executive Director. “I’m hoping to equal or better the number of marathon runners so that on October 26, we have close to 150 Runners for Autism.” If you still want to be part of the first annual RUN FOR AUTISM, consider joining OAR’s 5K team. The entry fee is $50, which includes the Marine Corps Marathon entry fee ($30), the official T-shirt, and administrative costs. Runners who raise $250 or more will be admitted free to OAR’s two-day Applied Research and Intervention Conference to be held October 24-25. For details, contact Mike Maloney by e-mail or by phone at (703) 351-5031. Foundation and School Sign On As Charity Partners Strengthening its relationship with service providers in the autism community, OAR welcomes two new charity partners to the RUN FOR AUTISM. The Autism Solution Center Foundation in Memphis, Tenn. and the Melmark School in Berwyn, Pa. join five other event Partners who will send runners and are raising funds for the RUN FOR AUTISM Research Fund and their own initiatives. Autism Solution Center Foundation President Laura Corby Laura Corby, President of the recently established Autism Solution Center Foundation, said the group is excited to be part of a national autism event. A parent of two children with autism spectrum disorders, Corby launched the Center last February with the idea of creating a place that will be a one-stop shop for parents seeking therapy and assistance. The plans she has for the Center include having an in-house biomedical research lab and service center giving families of all income levels access to medical assistance, therapies, advocacy help and counseling. “We want to have one place in the nation where everything is under one roof,” Corby explained. “And we want to be able to offer these services regardless of the ability to pay.” She is hoping to raise over $5,000 from the event. The Center will be represented by three marathon runners this October, Hank Davis, Katy Blackburn and Michael Musca and one 5K runner, Hank’s wife Paige. All four runners responded to a call for volunteers Corby made in her community and nationwide. Bernadette McNulty, Ph.D., at a recent racewalking event From the Philadelphia area, Bernadette McNulty will be racing to the finish line on behalf of the Melmark School, a school that provides residential and therapeutic services for over 200 children and adults with developmental disabilities at its center and community homes in the Philadelphia area. The school’s Director of Foundation Relations, Dr. McNulty will likely be one of many marathoners racewalking during the event. Racewalking is known as an exercise where walkers use their hips and arms to move with little impact on the joints, said McNulty, who took up the sport one year ago and now trains five times a week. “I’d always thought about doing a marathon but I was never in good enough shape,” she explained. “The sport is so grueling that I got up my stamina and thought I’d give it a try.” Already a third of her way to her fundraising goal of $3,000, McNulty said she has received a lot support from the school’s 500-person staff. Melmark also has a school with a staff of 130 people in Woburn, Mass, that provides educational and health services as well as residential support to 70 children with neurobehavioral challenges in New England. McNulty has been amazed at the response she has received since joining the RUN FOR AUTISM. “Even people with modest incomes have been giving to me,” said McNulty. “Those sacrifices have really touched me and inspired me.” VA State Runner Linda Campanelli RUN FOR AUTISM T-Shirts Now Available Mark the first annual RUN FOR AUTISM by wearing our new t-shirt. Featuring a unique design combining the American flag and OAR’s RUN FOR AUTISM logo, the 100 percent cotton shirts are available in sizes small, medium, large, extra large and XX large and cost $15 each plus shipping and handling. Please e-mail us to place an order. Please note: Each runner receives a shirt as part of the entry process. OAR will be mailing the runners’ shirts during the next two weeks. Five Women Unite For Autism Marathon The PA Women Runners (L to R) Cindy Eggelston, Nella Perrine, Jackie Ollinger and Lisa Gensheimer When Lisa Gensheimer found out she and her friend Jackie Ollinger didn’t get picked in the lottery to enter the Marine Corps Marathon a few months ago, they began searching for another way to participate in the race. After reviewing the list of charity sponsors on the MCM website, Gensheimer became drawn to OAR. Two years ago, the writer and documentary producer from Northeast, Pa. wrote an article on the Dr. Gertrude A. Barber Center, an autism services facility in Erie, Pa., and in the process got to know several families and caregivers of individuals with autism. Jackie and Carrie Ollinger “I thought why not train for my first marathon and do something good for others at the same time?,” said the 47-year-old Gensheimer. Fifty-one-year-old Ollinger, who has a family member with autism, immediately came on board and enlisted her 21-year-old daughter, Carrie, a college student, sister, Cindy Eggelston, and cousin, Nella Perrine, who are both 50, to join them. Except for Jackie Ollinger, the RUN FOR AUTISM will mark the first marathon for the four other women. Hailing from the northwestern corner of Pennsylvania and the nearby town of Westfield, N.Y., the five women gathered together for the first time recently. Because of varied schedules, Gensheimer said they unfortunately will not train together before the event. Jackie Ollinger is training to become a yoga instructor and works at her husband’s plumbing business while daughter Carrie attends college at Penn State Erie. Eggelston also works at her husband’s medical practice and Perrine is on active duty for the Air National Guard and is working as a receptionist. But together, they have set a goal to raise $5,000 for the event. Gensheimer, who raises money to produce her documentaries, said the women plan to ask their communities for donations and obtain corporate and small business sponsorships. “It's a real challenge training for a marathon, keeping up with work and family responsibilities, and raising money at the same time, but it is a much more meaningful experience for all of us,” said Gensheimer. “You won't see us in the top 10 finishers. We are all just hoping to finish with a smile on our faces!”

Resource

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 ways parents can prepare themselves, their child and their child’s teachers for the school year. Special thanks to OAR Scientific Council Member, Brenda Smith Myles, Ph.D., Associate Professor of Special Education at the University of Kansas, for her contribution.

Brenda Smith Myles, Ph.D.

The most frequent question asked by parents of new and returning school students this time of the year usually focuses on the subject of how they help their children succeed during the new school year. As a parent of a daughter myself, I know that both parents and children are usually anxious starting a new school year. And for children with autism spectrum disorders (ASD), there are often additional concerns. Parents worry about how the child will fare academically, socially and emotionally. Likewise, students often have concerns about facing a new teacher, making friends and overall, any changes in their structured school life.

Parent-Teacher Meeting
Parents and teachers can work together to help children overcome these difficulties by preparing the child before the start of a term and trading critical information that will help alleviate stress on everyone. This process can begin at a meeting during the previous school year to discuss the child’s individualized education plan (IEP), a time where parents frequently get to meet their child’s new teacher.

Before the start of the new school year, parents can resume that critical dialogue by scheduling a time to go to the school with their child to meet the teacher and familiarize themselves with their classroom and the general layout of the school. Even if it’s the same classroom as last year, changes such as a new seat assignment may wreak havoc for a child with Asperger Syndrome or ASD on the first day. By visiting school before the year begins and finding out in advance about the changes to come, children will not have to face an unwelcome surprise.

Prior to the visit, parents should consider asking the teacher to pose for a photograph or provide a photo of him or her to show the child after the meeting to familiarize the child with their new authority figure or acquaint the beginning student with the concept of a teacher. Parents can also bring along a video camera to the meeting to videotape the school and classroom for the child to watch later. For new students, having them watch video of the teacher instructing her class from last year can be a great tool in helping a child relax in the classroom atmosphere.

Some teachers may have little to no experience with autism or having children with Asperger Syndrome or ASD in their classroom. Thus, they need the parents of these children to give them a window into the child’s emotional world such as how they act when they are sad, frustrated or happy. At the earliest opportunity, parents should sit down with their child’s teacher to discuss their child’s likes, dislikes and stressors. Likewise, moms and dads should identify the type of environment in which the child learns best, activities the child succeeds in and the state of the child’s organizational skills. Moreover, by giving the teacher a general understanding of your child’s strengths, weaknesses, abilities, and behaviors, you will greatly aid him or her in planning classroom activities accordingly. At the same time, you will help give your child a greater capacity for learning and prevent stressful situations for the child and teacher.

Making Friends
Mothers and fathers can also lay the groundwork for the child to form a social network by identifying students in the classroom the child already knows such as children from their previous classroom or the neighborhood. Teachers should be made aware of social activities the child does and doesn’t do well and any special arrangements the child should have during recess. Because of a lack of understanding in social situations, children with ASD often need structured activities to occupy their time during recess or free time such as study periods in middle or high school. Knowing this ahead of time can help the teacher come up with ideas for activities.

Trading Feedback
Lastly, parents and teachers should decide on how best to trade feedback about the child. Whether it’s by e-mail, phone, a shared journal or weekly meetings, parents and teachers should communicate regularly to keep up with the child’s progress. Teachers should remember that when speaking to a parent, they should always present the child’s accomplishments first and then discuss other aspects of the child’s performance. By supporting one another as members of a team, parents and teachers can help the student accomplish goals and enjoy a successful school year.

Brenda Smith Myles co-directs a graduate program in Asperger Syndrome and autism at the University of Kansas. She is also the author of over 100 books and articles on autism and Asperger Syndrome including Asperger Syndrome and Difficult Moments: Practical Solutions for Tantrums, Rage and Meltdowns and Asperger Syndrome and Adolescence: Practical Solutions for School Success. Dr. Myles will be presenting on the topic, “Educational Strategies for Individuals with Asperger Syndrome” at OAR’s Applied Research and Intervention Conference in Arlington, VA, on Fri., Oct. 25, 2003.

Events

Applied Autism Research and Intervention Conference
Key Bridge Marriott, Arlington, Va.
Fri., Oct. 24 and Sat., Oct. 25, 2003

Parents and professionals are invited to attend OAR's first Applied Autism Research and Intervention Conference. The two-day event will be part of a three-day schedule of autism events leading up to the "grande finale" - the RUN FOR AUTISM on Sun., Oct. 26 in the Nation's Capital.

The conference's theme, "Education and Intervention Across the Life Span" represents the host of topics that will be discussed during the conference. During the first day, attendees will see presentations by members of OAR's Scientific Council and guest speakers. The conference will conclude on the second day with half-day workshops. A list of speakers so far includes OAR Scientific Council Chairman Peter Gerhardt, Ed.D., and fellow Council members Michael Fabrizio, MA, BCBA, Suzanne Letso, MA, BCBA, James Mulick, Ph.D., Joanne Gerenser, MA, CCC-SLP, Robert Sprague, Ph.D. and Brenda Myles, Ph.D. Edward G. Carr, Ph.D., a well-known speaker on problem behaviors will also present.

For more information, contact us by e-mail.

Other Voices VII
Carolines on Broadway, New York City
Monday, Nov. 10, 6:00 - 9:00 p.m.

You are invited to an evening of comedy and cabaret in the Big Apple benefiting autism research and a New York City women’s theatrical organization. Marking its seventh year on stage, Other Voices VII 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. Last year’s event raised $50,000, the highest total ever. Please help us break another record this year.

The show will be held once again at the famed club, Carolines on Broadway, and will feature the talents of Tony award-winning actress and singer Melba Moore. The event includes a cocktail reception, followed by dinner and the show. For information on tickets and sponsorships, contact Mike Maloney by e-mail or by phone: (703) 351-5031.

Capital Autism Golf Classic 2004
The Piedmont Club, Haymarket, VA
Monday, April 26, 2004

PLEASE NOTE THERE HAS BEEN A DATE CHANGE. OAR has moved the annual Capital Autism Golf Classic to the spring. Mark your calendars for April 26, 2004, and please join us 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 isavailable 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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