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August 2009 |
News from OAROAR Awards Seven New Graduate Research Grants OAR is pleased to announce the results of its sixth annual Graduate Research Grant Competition. This competition, open to graduate students pursuing master’s or doctoral degrees, awards up to $1,000 and $2,000 respectively to those conducting research related to autism spectrum disorders. This year, OAR will make seven awards totaling $13,000 to six doctoral students and one master’s student conducting research related to autism. With today’s grants, OAR has awarded $97,000 in research grants to 53 graduate researchers since the inaugural competition in 2004. The 2009 competition achieved a new first for OAR as Matthew Segall, a Ph.D. candidate at the University of Georgia, becomes the first person to receive an OAR grant at both the master’s and doctoral level. Segall originally applied in 2007 and received a grant forhis master’s research, which examined factors relating to educational professionals’ classroom practices for the inclusion of students with autism spectrum disorders. The doctoral study will take his preliminary research a step further by studying the educational placement of these students. OAR received 19 research proposals this year. In evaluating the research proposals, two members of OAR’s Scientific Council reviewed and scored each proposal. The reviewers’ task was to identify the studies that best matched OAR’s research priorities and which potential outcomes were most relevant for families. In keeping with OAR’s dedication to quality research, only the best of the best were selected for funding. The 2009 grant recipients are: Suzannah J. Ferraioli, Rutgers, the State University of New Jersey – Doctoral Grant Tina R. Goldsmith, Ph.D., Yale University – Post-Doctoral Grant Michelle Patriquin, Virginia Polytechnic Institute and State University – Master’s Grant Julie Ramisch, Michigan State University – Doctoral Grant Kendra Rickard, University of Nevada, Reno – Doctoral Grant Matthew Segall, University of Georgia – Doctoral Grant Hui-Ting Wang, University of Washington – Doctoral Grant After completing this sixth annual grants process, OAR President and Scientific Council Chairman, Peter Gerhardt, Ed.D., commented, “Each year the number of young researchers applying for an OAR graduate grant increases, as does the quality of their applications. Our hope is that all the applicants, whether or not they received an OAR grant, will continue pursing intervention research as one part of their future professional lives. This is the real, long-term benefit of this program.” For information on the 2010 Graduate Research Grants Program, please visit OAR’s Web site or contact Alyssa Kruszyna, assistant director, research and programs at (703) 243-9717.
You Can Still Register! On Friday, October 23, and Saturday, October 24, 2009, OAR will host the seventh annual Applied Autism Research and Intervention Conference at the Westin Arlington Gateway in Arlington, VA. For these two days, 23 leading autism professionals, researchers, and experts in fields related to autism will present the latest research and evidence-based interventions regarding autism spectrum disorders. Following last year’s format, each day will feature two parallel tracks. The topics on Friday will include OAR-Sponsored Research and Research to Practice. Saturday’s attendees will be able to choose from Education for School-Age Learners and Transition and Life in the Community. OAR will be offering BCBA, APA, and ASHA CEUs throughout the conference. Attendees will be able to receive a maximum of 9 BCBA CEUs and 11 APA credits throughout both days. To receive ASHA credit, a total of 1.2 CEUs, attendees must attend both days of the conference. Friday’s Highlights Attendees can then choose sessions from two different tracks--OAR-Sponsored Research, in which OAR-sponsored researchers report on their specific research projects, or Research to Practice, with presentations describing how families and professionals can use current information to help those whose lives are affected by autism. Attendees will be free to shift from one track to another throughout the conference. Daniel Openden, Ph.D., BCBA, will close the educational part of the day with his address, “Pivotal Response Treatment & The Development of Social Competence.” Dr. Openden, vice president and clinical services director for the Southwest Autism Research & Resource Center (SARRC), will answer questions regarding pivotal response treatment (PRT). During his presentation, Dr. Openden will demonstrate how a focus on pivotal areas can enhance the development of social competence in children with autism. In addition, he will describe methods for translating PRT into effective and accessible clinical practice. Immediately after, conference attendees can head for a “Meet the Speakers” reception in the main exhibit area. Attendees and speakers will be free to meet, mingle, and discuss the day’s presentations and activities over hors d’oeuvres and beverages. All are encouraged to attend. And On Saturday The two tracks featured on Saturday are Education for School-Age Learners, which focuses on teaching important skills to children with autism, and Transition and Life in the Community, which focuses on older individuals who are in the process of becoming independent members of the community. To view the schedule, visit www.researchautism.org/news/conference/schedule/index.asp. For more information, please contact Alyssa Kruszyna at (703) 243-9717 or akruszyna@researchautism.org.
OAR and Its New RUN Coordinators Make a Perfect Fit
OAR is pleased to welcome Julia Hornaday and Lily Matusiak to its staff as RUN FOR AUTISM coordinators. Matusiak joined the staff on August 31 and Hornaday came on board on September 14. “We look forward to the opportunity that Lily and Julia bring us to expand our RUN FOR AUTISM opportunities and make the RUN even more visible in the running and autism communities as well as with the public,” says Executive Director Mike Maloney. After working in Manhattan for the Jewish Outreach Institute as a program officer for two years, Matusiak was ready for a change so she moved to Silver Spring, MD, to be closer to family. She found a new equally rewarding position with OAR. “I was familiar with the RUN FOR AUTISM program from its visibility in other races that I had either participated in or volunteered with. I knew that it was a growing program and I wanted to help take it to the next level, both in the money it raises and the number of race participants. Also, I wanted to work for OAR because of its mission, focusing specifically on research devoted to the day-to-day challenges of those affected by autism.” Hailing from St. Joseph, MO, Hornaday’s passion for education led her to OAR where she is “excited to help further education for researchers, individuals with autism, and the people in their lives.” She graduated from the University of Missouri in 2008 with a double degree in education and business administration with an emphasis on marketing. Her interest in fitness began in high school when she joined the cross-country running team. Though her participation declined in college, she believes “once a runner, always a runner,” and she recently got back into running to train for a 10K in the Kansas City area. “Now when I run, I remember all I have to do is put one foot in front of the other,” Hornaday observes. “I think running gives us a little glimpse into the struggles many people face on a daily basis. I also believe that all runners are connected by a bond, no matter how fast, slow, competitive or leisurely one may run. I am excited to interact with and give thanks to those who work so hard to benefit others.” Matusiak’s interest in athletics and fitness also goes back to her youth. In high school, she played for several competitive softball teams, joined the varsity fencing team at Penn State, and ran in her spare time. “When I moved to New York City, my running hobby became a passion. I trained for and ran the 2008 Rock ‘N’ Roll Marathon in San Diego, crossing the finish line in under 4:30. Since then, I have run several half marathons and smaller races on my own and just competed in the 2009 Nation’s Triathlon with Team in Training, finishing in under 3 hours. I run (and now bike and swim) almost every day.” Both women agree working at OAR will give them an opportunity to combine their passions—for fitness and for helping people. “It is a perfect opportunity!” says Hornaday. “I am most looking forward to working to increase public exposure of OAR and the RUN FOR AUTISM through new media, as well as working to give OAR a presence at new races.” “I fell in love with the running community, a group of people who can’t wait to wake up early on a Saturday morning to put in their long runs,” notes Matusiak. “Working for OAR means I will have the chance to meet runners and walkers on race weekends and honor and celebrate with them as they reach their fundraising and running/walking goals.”
To the Top: We Join Sarah Carter as She Begins Her Ascent for Autism
I returned from Tanzania a couple of weeks ago after a successful summit of Mt. Kilimanjaro! It was a fantastic experience -- exhilarating, challenging, and in the end, deeply rewarding. A full write-up of my trip can be found at http://sarahmc.typepad.com/first_climb/.
I departed for Tanzania from Boston on July 26, armed with my backpack and a large North Face duffel bag, in the middle of a sweltering New England summer afternoon. Preparing for this trip had been a bit stressful. For several weeks beforehand, I had been swimming in a sea of medical school applications, projects for work, and shopping for last-minute pieces of outdoor equipment and clothing. As I lumbered toward the taxi with my heavy bags, I crossed my fingers and just hoped that I hadn't forgotten some crucial piece of gear. My head overflowed with thoughts as I traveled overnight across the Atlantic, then southeast from Amsterdam to the Kilimanjaro airport the following day. I felt both anxious and excited to be finally making this trip after months of preparation. How would I feel after hiking in relatively high altitude for over a week? What would our climbing group be like? Would I get altitude sickness? Did I need to use iodine tablets in addition to filtering my drinking water? I barely slept on either leg of the flight. Our flight landed in Tanzania late in the evening. The Kilimanjaro airport is tiny, with just four gates. I exited the huge KLM jet via a shaky set of stairs and headed toward the small terminal building. The air outside was cooler and drier than I had expected, even though I knew it was technically winter in Tanzania. I took a moment to gather my thoughts and get a few photos before entering the airport. I was the first person in our group to make it through customs and the luggage pickup, so our driver had me wait with my belongings outside the airport. Eventually, our entire group joined me, and I realized that I was the only person traveling alone, and the only woman. The rest of our group consisted of a pair of dentists from Chicago, two friends from Boston, and two brothers from San Francisco and Philadelphia. Everyone seemed jetlagged and exhausted from traveling. We were taken to a lodge less than five minutes from the airport. I was thrilled to set my bags down, take a long shower, and crawl into bed! It had been a while since I had eaten last, but I felt a bit apprehensive about wandering around the lodge and ordering dinner late at night on my own, so I settled for a Clif bar and called it a night.
I woke up early the next morning and wandered around the lodge, watching the sun rise and trying to figure out whether I could see Kilimanjaro from our location. I walked up to the highest point on the property - the swimming pool - and in the clear early morning light could just barely make out the top of the mountain, far in the distance. After a big breakfast, I met up with some other members of my climbing group and we talked for a few minutes before meeting with our head guide, Bernard, and a few members of the staff. Bernard told us he had climbed Kilimanjaro upwards of 80 times, and explained our itinerary for the trek. Even with detailed descriptions of the kind of terrain we could expect each day, it was impossible to imagine at this point what the landscape of Kilimanjaro would look like. Nonetheless, his positive energy and seeming confidence in our ability to summit was heartening. We traveled in two Land Rovers to our next location for our final night before starting the trek. On the dusty roads, we passed colorfully clad women walking alongside the road balancing enormous jugs of water on their heads (which led me to wonder how far they had to walk for their drinking water), small children in bright school uniforms who waved excitedly as we drove by, men on rickety bicycles often carrying huge crop loads or one or more extra passengers, hungry-looking cattle, and large herds of small goats accompanied by young shepherds. Eventually, we turned onto a bumpy, unpaved road from which we saw zebras, wildebeest, secretary birds (aptly named because they "type" on snakes with their powerful talons for food), and huge ant and termite mounds, as well as lovely, iconic acacia trees dotting the landscape. We also happened to pass some elephant trainers with a baby and adult elephant, right next to the road - my favorite sight from the drive! ***** Thank you to all of you who have made a donation to Ascent for Autism. I am deeply grateful for all your support, and I sincerely hope to continue this project in the future. I wanted to let you know as soon as possible how much your generosity meant to me! I certainly had your fantastic support in mind as I was inching my way toward the summit after seven hours of steep uphill climbing the day we reached the top of the mountain. If you would like to donate, you can still make a contribution at http://www.researchautism.org/news/otherevents/AscentforAutism.asp. All best wishes as summer draws to a close, and again, many thanks! --Sarah RUN FOR AUTISM News
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In New York, the weekend kicked off with an informal social gathering at the Uptown Restaurant & Lounge Saturday evening where Executive Director Mike Maloney, and OAR Board member Bill Donlon greeted runners. Donlon and Maloney then rendezvoused at Battery Park in Lower Manhattan early the next morning to set up OAR’s Finish Line Celebration area while the runners contended with the humidity along the 13.1 mile course starting at Central Park then south through Times Square then on to the Westside Highway to the Finish Line in Lower Manhattan. 
In Virginia Beach on Labor Day weekend, Maloney did the finish line honors by himself. Located on the beach, the Charity Village was a short walk from the finish line just down the beach on the Boardwalk. The spectacular day turned into a festive beach party as runners finished and gathered on the beach to listen to the music of the nearest band. .  |
Dylan Blahetka, 9, recently completed his first TRI FOR AUTISM, following in his father's footsteps. |
Dylan Morgan-Blahetka, age 9, is not waiting to grow up to be like his father. He’s already gotten started. After years of watching his father run marathons and participate in triathlons, Dylan decided he wanted to try a triathlon himself. “I saw Dad do it and I decided I wanted to do it too,” Dylan explains.
He knew how to ride a bike. And, even though he wasn’t fond of running, he could do it. Especially with the lure of ice cream after a finished training run. What he had to do was to learn to swim. “Sign me up,” he told his parents, Ken and Adriane.
Several months and hours and hours of training and lessons later, Dylan Blahetka, who had not yet started third grade, finished the Chicago Kids Triathlon, 100 meters swimming, 4 kilometers biking, and 1 kilometer running, on August 29. “I swam and biked and ran. The most fun was when I went swimming.” The least fun, Dylan says, was when he got lost after he crossed the finish line. “I couldn’t find my parents.” Retrieved by his mom and dad, Dylan could enjoy their congratulations.
To say that his parents and siblings, Kevin, 6, and Jamie, 2, were thrilled is probably an understatement. Beyond being thrilled at his accomplishment, they were also proud that Dylan decided not to just do the triathlon but to raise money for OAR as well, something his father has done for the past three years. “It was great to see him cross the finish line. He was so proud that he had done this and raised money,” says his father.
Raising money for OAR is personal with the Blahetka family. “My brother, Kevin, has autism,” Dylan explains.
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Dylan Blahetka, 9, recently completed his first TRI FOR AUTISM. The family expects that Dylan's younger brother, Kevin, 6, may one day take up the cause as well. |
“Most of the time, Dylan is a really good big brother to his siblings,” his father adds. Kevin, 6, who was diagnosed with autism several years ago, is well on his way to following in his big brother’s and father’s footsteps. “Kevin and I did a 5K run together this summer,” explains Blahetka. “Dylan loves swimming and likes biking but he does not like running. Kevin is the exact opposite.”
Like his dad, Dylan didn’t stint on his fundraising efforts. By the end of the triathlon, he had raised $550 for OAR. Blahetka typically does a few events each year, from 5K runs to a 70.3 mile Ironman triathlon and stair climbs. This year, he skipped the Chicago Marathon so friends and family could donate to Dylan’s triathlon. Dylan used the same tools his father does—the Internet and e-mail—to let people know about his efforts.
As for Dylan, he’s still tracking his father’s footsteps, looking for the next venture—another triathlon.
SALUTE:
Connecting the Dots for Better Futures
Sure, the Autism Speaks Family Services Department helps thousands of family members deal with the issues they are facing, answers the questions they have, and offers resources they desperately need. But those numbers are trumped by the impact the department can have on each person, each family who is struggling with what to do with a new diagnosis or a young person needing to move on to adulthood or a child without access to proper services.
“Last spring, the president of Autism Speaks, Mark Roithmayr, was in Florida touring a facility,” says Lisa Goring, family services director for Autism Speaks. “He had his Autism Speaks pin on and a parent came up to tell him that she went on the Autism Speaks Web site when her child was first diagnosed. She found out about our 100 Day Kit and she spoke with one of our Autism Response Team members. When she got the kit, which was personalized for her location and her child’s age, she made copies for her friends and family so they could better understand what she and her family were going through. The kit included a list of resources in her area, which she used to access the services her child needed. Now, she told Mark, the child and family are doing well.”
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Lisa Goring enjoys family time with her husband, Paul, and children Lindsay and Andrew. |
Goring says that it is this kind of impact that makes her job worthwhile. “It’s so rewarding to get feedback from families about the help we provide, the resources that the Family Services team tells them about.”
Goring notes that most of Family Services’ projects connect families and people in need with the information and resources they are seeking. “Our goal is to enable families to better advocate for and help their children with autism spectrum disorders (ASD), whether they are young or adults. When that happens, it’s very satisfying!”
Combining Passion and Experience
Goring brought a lot of experience in making people happy to her Autism Speaks job, albeit in a very different context. For 19 years, she was the vice president of merchandising for Saks Fifth Avenue. “I learned great skills there that I can put to use in this job.” When her second child, a son named Andrew, was diagnosed with autism, Goring quit her job to stay home with him and coordinate his home program and better integrate him into the community.
Today, Andrew is 13 and her daughter, Lindsay, is 17. Goring and her family, including Paul, her husband, live in Manhasset, New York. And Goring has a job that allows her to combine her personal passion and professional experience. When Andrew started kindergarten, Goring joined special education and parent support groups. Eventually, she got a job as a teaching assistant at Nassau Suffolk Services for Autism's Martin C. Barell School.
Three years ago, she was ready for a new challenge and thought about Autism Speaks. When she talked with Roithmayr, he told her about the newly formed Family Services Committee. She began working for Autism Speaks as a consultant assigned to execute the committee’s projects.
She came on staff as liaison for the Family Services Committee in June of 2006. In May of 2007 she was appointed director of family services. “At Autism Speaks we strive to be the connection between people with autism, at every life stage, newly diagnosed, a child, young adult, or adult with autism and the information they need to improve their educations, services, and lives. Our goal is not to reinvent the good work that has already been developed by others but rather to work with the many terrific organizations around country and let families know about those organizations and the resources that they provide.”
Connecting Families to Resources
What the Family Services department tries to do is to answer people’s questions about autism and also to anticipate the needs of individuals and families so that it can provide resources as needed. “For example, if we notice we’re getting lots of inquiries about recreational programs, we will research recreational programs throughout the country so that we can and put them in our resource guide,” explains Goring. The Resource Guide, available on the website, is one of the cornerstones of the work the Family Services department does.
The online Resource Library offers information on websites, blogs, DVDs, books, magazine articles, educational manuals, software, and more. The Autism Speaks 100 Day Kit, in English or Spanish, is available for newly diagnosed families, to make the best possible use of the 100 days following the diagnosis of autism. A school-community kit offers resources to help school-related staff (lunchroom personnel, custodians, bus drivers, etc.) and student peers better support students with autism spectrum disorders.
All of this is available free of charge and online, says Goring, to make it easy and convenient for individuals, parents, and the community at large to access and use.
Because it tries to anticipate the needs of families, Goring says that recently the Family Services department has added resources for adults with autism. For example, the Web site now feature Autism in the Workplace with video clips that feature people with autism working, as well as employers talking about working with people with autism. A list of steps that need to be put into place to make employment successful is also available.
Seeking Collaborators
Much of what the Family Services Department does is built on creating and maintaining partnerships so that it can connect families in need with an organization that can fill that need, says Goring. A good example of the kind of collaboration that the Family Services Department seeks is its partnership with OAR. “OAR has been great partner throughout. We get feedback from OAR staff letting us know about other professionals or specific resources that would be helpful to families. In order to further increase resources to families, OAR was one of our first grantees to receive funding through our Family Services Community Grants to translate its Life Journey Through Autism guides for Spanish-speaking families.”
OAR and Autism Speaks are also two of several organizations working together on Advancing Futures for Adults with Autism, a national consortium dedicated to setting national priorities for adults on the autism spectrum and transforming public policy and programming for teens and adults with ASD. “This is such an important issue, and one that requires the work of many organizations throughout the country. We at Autism Speaks are thrilled to work with OAR and the other wonderful organizations on this effort.”
For Goring, it all comes down to this: knowing that what she does offers individuals with autism and their families an opportunity to make their lives better, whether that’s through a new school, a new behavioral program, a connection to job training, or a resource that enlightens friends and family. Having the resources, connections, and experience to be able to reach those families with the help they need makes Goring one happy director.News From the Autism Community
CDC Introduces a New Autism Website
In August, the Centers for Disease Control (CDC) launched its new autism Website at www.cdc.gov/autism. Some of the new features of the site include:
- Updated and easy-to-read information on facts, screening, diagnosis, and treatments
- Pages dedicated to data and statistics, research, and publications
- Individualized pages for different visitors - people with ASD, families, healthcare providers, educators, and partners
- An interactive autism quiz
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