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July 2009 |
Message: Moving Forward in Challenging Timesby Michael Maloney, Executive Director
The economic downturn has created challenges for families and businesses across the United States, including small nonprofit organizations like OAR. With the advent of a new fiscal year July 1, OAR’s plan for the next 12 months emphasizes maintaining stability and the quality of its programs over program expansion. Nonetheless, OAR’s plan is ambitious and the effort required to support the plan will be significant. OAR’s fiscal year calendar is traditionally front-end loaded, and this year is no exception. October looms large with two major RUN FOR AUTISM events, the Chicago and Marine Corps Marathons, just two weeks apart, the scheduled release of Life Journey Through Autism: An Autism Guide for Military Families and the launch of a related Web site, the annual meeting of OAR’s Scientific Council, and the annual educational event, the seventh annual Applied Autism Research and Intervention Conference. In addition to this, OAR will accomplish the following in the next six months:
The groundwork for each of these major tasks has been ongoing for most of the year as it has for the following fiscal year goals that involve continuous planning for what are a series of recurring events and activities.
Finally, as if that is not enough, OAR will host its third biennial Autism Research Convocation in June 2010. The Convocation will examine evidence-based research relative to language and communication and will be conducted in collaboration with the Southwest Autism Research and Resource Center in Phoenix, AZ. Looking at this list, I have to pause for a moment to recognize the OAR staff, all five strong, and the interns and volunteers who help throughout the year. They have successfully run this gauntlet in years past, and their dedication and hard work will carry us through the next 12 months. As we prepare to take on these tasks, the financial future presents the most uncertainty and the greatest potential challenges to OAR’s plans. To accomplish all of our goals will require us to raise $1.25 million this fiscal year. To do that means we have to equal or surpass last year’s revenues, which is no small task. Our projections look solid but leave little margin for error. As a result, we have been proactive in some areas implementing tighter spending criteria and controls, imposing a hiring moratorium, freezing salaries for the near term, adjusting the schedules for some programs and projects into future fiscal years, and developing a contingency plan in the event we do not meet revenue goals. Despite the difficulties of this economic climate, we are encouraged by the continued success of OAR’s RUN FOR AUTISM program and the support OAR received through last year’s workplace charitable campaigns, almost $300,000 in pledges from the Combined Federal Campaign, state and municipal drives, and private sector campaigns. With the total number of OAR runners already approaching 700, the fundraising goals for the RUN program appear more in reach with each new runner. With the workplace campaigns and the RUN program holding strong and the addition of several smaller fundraising events, we remain confident in our plans, our budget, and our ability to accomplish these goals and more as we move forward into 2010. Time to Play. And Observe. And Learn.
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As an early educator, you know that the adult command to children to “Go out and play” can be as much about learning as about fun. Play is also a good opportunity for educators to observe a child’s development. To help, the Centers for Disease Control and Prevention’s (CDC) “Learn the Signs. Act Early.” campaign offers the Go Out and Play! Kit, a free resource for fun and interactive activities designed for children 3 through 5 years of age, as well as other important information about child development and sharing concerns with parents. .  |
by JUAN CARLOS SANCHEZ/ El Nuevo Heraldo |
Thanks to the help of local Spanish television and radio stations and a series of newspaper articles about autism and the conference, more than 300 people had registered by June 11, the night before the conference. After the final television interview that night, another 75 people walked in the next morning for same-day registration.
The conference, "Autism: Information, Alternatives and Treatment," took place from 8:30 a.m. to 3 p.m. at the International Technology, Education and Commerce Center in Brownsville and was sponsored by the Mexican Consulate, the University of Texas at Brownsville, and Texas Southmost College. It was conducted entirely in Spanish and admission was free.
In addition to author and keynote speaker, Iland, whose travel was underwritten by OAR, two other presenters spoke. Leticia Trejo, a behavioral and training consultant for children with autism and the first therapist in the Rio Grande Valley to use Applied Behavioral Analysis in treating autism, discussed treatment. Dr. Pablo Obregon, a pediatric surgeon from Centro Medico Internacional in Matamoros, discussed the medical aspects of autism. The event was streamed live on the Internet.
While Dr. Obregon and Trejo presented, Iland conducted a training session for 19 promotoras (lay health workers in the local Latino community) using the syllabus and materials created by OAR. Iland spent three hours going over all the resources provided by OAR, with emphasis on understanding early childhood developmental milestones and talking with families in different environments. Iland even included time for practice and role play. According to Iland, the promotoras left the session assuring her that they felt very informed and prepared to have conversations with families in the community. In the final conference session, Iland took the opportunity to publicly recognize the promotoras as leaders and assets to the community. Then each promotoras received an OAR certificate of completion on stage at the end of the conference.
As with the Houston conference, this conference further highlighted the interest and need for more information within the Latino community. Dr. Oscar Munoz, the deputy director of the Colonias Promotora Program at Texas A&M University, attended the conference and, like many, was stunned by the public response. According to Iland, he had not understood the level of need until he saw the number of people who came. Speaking specifically about promotoras, he said that all promotoras needed to attend a conference like this. He concluded by saying that the conference was an amazing first step and the outreach effort in Texas should be expanded based on this model.
Iland said that this total conference experience was a highlight of her career. “To be there for the parents and professionals and have the chance to train the promotoras was wonderful,” she says. “The audience was so appreciative. If I could clone the day and take it on the road, it would be so powerful and productive!”
October Launch Seen for Autism Guide for Military Families
Last October, OAR received a grant from the American Legion Child Welfare Foundation to create an autism guide for military families. Work on the project began with the October/ November issue of The OARacle, which focused exclusively on information relative to military families touched by autism (view the October/November 2008 issue). It has continued throughout this year.
The project envisions two complementary components; a comprehensive, Web-based resource accessible to military families wherever they live and a companion, hard-copy resource guide intended as a personal reference tool for each parent and family. In combination, these resources will provide a 24/7 resource that will include information about autism and autism treatment; specifics about navigating the military healthcare system; lists of autism resources, schools, and support available at or near military installations; and practical tips and suggestions on handling the many transitions military families and their children must face.
According to OAR Executive Director Mike Maloney, the guidebook, titled Life Journey through Autism: A Guide for Military Families, will be modeled along the lines of OAR’s Life Journey through Autism series of resource publications.
“We’re attacking this in three ways,” says Maloney. “First, we’re pulling information about autism and how it relates to education and schools from our existing guides. At the same time, we are learning about the military healthcare system, programs that apply to military families that have children with special needs, and what’s available on and off base. Finally and with the assistance of several military spouses and service members, we are working on a series of user-friendly “tip sheets” to address a range of transitions and challenges these families face as a fact of military life.”
For OAR interns Danielle Kruglak and Kate Rice, who were featured last month (read the OAR News from June 2009), the project has become their full-time jobs. “We’ve got about 60 percent of the guide in draft and have begun working with the Web site design team,” says Rice.
Kruglak adds, “The biggest challenges are completing the research to create the national resource listing and then figuring out how to make the information readily accessible for the user.”
Thanks to the efforts of Rice and Kruglak, says Maloney, the project is on schedule. OAR plans to have a draft guide by late August.
“Once the draft is ready, the most important phase begins,” Maloney explains. “We will send the draft out for review to a group of parents, educators, and autism professionals and are working to ensure that military families and personnel that serve the military autism community are well represented. The feedback we have received in publishing our previous guides has been invaluable.”
Work on the Web site is going on concurrently with OAR aiming for a combined launch of the Web site and release of the new guidebook on October 1.
OAR Needs YOU! It’s not too late to get involved. OAR welcomes volunteers interested in helping write some of the “tip sheets” or serving as reviewers of the draft. Anyone interested should contact Maloney at: mmaloney@researchautism.org. |
Conference Preview
Autism and Transition: Building Bridges from School to the Community and Workplace
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Paul Wehman, Ph.D. |
Paul Wehman, Ph.D., has enjoyed the opportunity to have a positive impact on people with disabilities and their families. “The research we’ve done at [the Rehabilitation Research and Training Center on Workplace Supports for Persons with Severe Disabilities at Virginia Commonwealth University (VCU)] is now being used in 30 countries around the world.” These practices have enabled individuals with disabilities and their families to have more hope that real work is a possibility. “We hope to extend that same possibility to people with autism.”
Dr. Wehman believes that work and integration into the community are essential components of successful lives for people with autism spectrum disorders (ASD) as well as those with other disabilities. “All people with ASD can and should make the transition from school to adulthood. All can and should have a Transition IEP, which provides a blueprint for movement into the community.” Individual planning and community transition planning are necessary to make this happen, he says.
His keynote address at OAR’s seventh annual Applied Autism Research and Intervention Conference in October (below) will center on the positive impact of work, college, and community integration on adolescents with ASD and how life skill programs, Applied Behavior Analysis, and assistive technology can play a major role. He will also present the “challenges children with ASD face as they grow up and how these challenges are different from students with other disabilities” and describe how transition supports match well to the needs of young people with ASD.
Necessary Steps
“Young people with autism need a specific set of supports to successfully transition. Life skill programming using community-based instruction, Positive Behavior Supports, and assistive technology are powerful tools for intervention. Transition supports are substantial in number and can be identified through meaningful person center planning for each student.”
According to Dr. Wehman, the three most important areas that must be addressed for ensuring successful transition are:
- Community service program capacity and availability.
- Training of available staff--there is a vast shortage of persons available who know how to work with adults with ASD.
- Funding to support persons with ASD and community service capacity.
“Families need to emphasize community involvement at early ages. They need to emphasize data-based decision-making. Families also need to insist on real work for real pay experiences as well as college opportunity experience,” emphasizes Dr. Wehman.
There is a need to provide funding and service availability for people with autism who are 21 and older. “Those are virtually absent in most states and communities,” says Dr. Wehman. “A federal autism law and insurance would be extremely helpful but without states buy-in for service, this will not matter. Medical infrastructure grants, the Medicaid waiver program and expansion of Rehabilitation Act funding would all help.”
A Life-Changing Break
If you had asked Paul Wehman, college student, what his career would be, it is highly unlikely that the answer would have been “disabilities researcher.” He received his bachelor’s degree in business. “I was very interested when I finished college in consumer behavior and marketing, which are based in psychology.” Waiting to go to Vietnam, he broke his leg. Because the break was bad, it took a long time to heal, providing him with a waiver from Vietnam and a new career. “I decided to work with people with severe disabilities.” He got his Ph.D. from the University of Wisconsin in 1976 and arrived at VCU that same year.
Today, he is the director of the Rehabilitation Research and Training Center on Workplace Supports for Persons with Severe Disabilities, chairman of the Division of Rehabilitation Research in the Department of Physical Medicine and Rehabilitation/ Medical College of Virginia, and professor in the Department of Physical Medicine and Rehabilitation/Medical College of Virginia. “The center has 55 staff and a budget of $5 million. We work with people with all kinds of disabilities. Right now, we’re focusing on autism, specifically the transition into adulthood, and also working with veterans with traumatic brain injuries from our wars in Iraq and Afghanistan.”
Early Birds Get the Discount: Register Now for OAR’s 2009 Conference
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Applied Autism Research and Intervention Conference 2008 |
OAR will host its seventh annual Applied Autism Research and Intervention Conference on October 23-24, 2009. This event will take place at the Westin Arlington Gateway in Arlington, VA, for the third consecutive year. There will be two simultaneous tracks each day: OAR-Sponsored Research and Research to Practice on Friday and Education for School-Age Learners and Transition/Life in the Community on Saturday.
Early bird registration is $75 for one day and $125 for both days of the conference. These discounted rates are only available until September 23, so register soon! Fees are waived for persons with autism and RUN FOR AUTISM participants who raise over $250.
Continuing Education Units (CEUs) will be available from both the American Speech-Language-Hearing Association (ASHA) and the Behavior Analysis Certification Board (BACB). ASHA members will receive 1.2 CEUs and BCBAs can gain up to 9 credits. To receive ASHA CEUs, attendees must attend both days of the conference.
For more information on this year’s conference, visit http://www.researchautism.org/news/conference. For questions, please contact Alyssa Kruszyna, assistant director, research and programs, at 703-243-9717 or conference@researchautism.org.Focus on OAR Research:
Examining Prerequisite Skills for Learning Using Video Modeling
In 2008, OAR funded six research projects. Since the beginning of 2009, The OARacle has featured those research projects in the newsletter. This month’s featured research project investigates the link between short-term memory and learning video modeling.
How Will This Study Help People with Autism and Their Families?
This OAR-funded research could lead to a quick way for educators to assess whether video modeling is an appropriate teaching procedure for a specific child and a prescribed teaching method for preparing children to learn using video modeling.
Describe the Study.
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Rebecca P. F. MacDonald, Ph.D., BCBA |
While video modeling is an effective and efficient instructional technique for many children with autism, some children do not learn using video modeling.
In a pilot study, OAR-funded researchers Rebecca P. F. MacDonald, Ph.D., BCBA, director of the intensive instruction program at the New England Center for Children, and William H. Ahearn, Ph.D., BCBA, director of research at the Center, developed a pre-assessment battery of tests to measure levels of performance on a variety of skills that could influence learning using video modeling and found that poor responding on delayed match-to-sample tasks was associated with failure to learn using video modeling.
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William H. Ahearn, Ph.D., BCBA |
Previous researchers found greater decreases in accuracy on a widely used procedure to measure short-term memory, delayed matching-to-sample (DMTS), in individuals with developmental disabilities than typically developing individuals.
It appears that memory may play an important role in learning to use video modeling. In video modeling, the child observes the video and then imitates the model. This requires that the child remember the observed actions for the duration of the video and the period of time between the video and the task presentation.
Drs. MacDonald and Ahearn plan to investigate the prerequisites for video modeling and to evaluate the role of delayed matching in video modeling. They also plan to teach delayed matching to determine whether this could lead to children learning through video modeling.
Their OAR-funded research project consists of two experiments. In the first, they are evaluating the relation between delayed match-to-sample performance and imitation of a video model. In the second study, they will teach delayed match-to-sample to see if this could translate into children learning through video modeling.
Experiment 1: The purpose of Experiment 1 will be to refine the pre-assessment battery of tests to assess performance on skills such as: imitation, simultaneous and delayed conditional discrimination match-to-sample tasks, and attending to a video. The purpose of this study will be to evaluate the relationship between performance on these measures and imitation of a video model.
Meet These OAR Researchers With more than 20 years of experience in the field of autism, Rebecca MacDonald, PhD, BCBA, is the director of the Intensive Instruction Program - Preschool Services at The New England Center for Children in Southborough, MA. She received her doctorate in clinical and child psychology at the University of Kansas and is a licensed psychologist. She is currently conducting research on the effectiveness of Early Intensive Behavioral Intervention for young children with autism. William H. Ahearn, Ph.D., BCBA, has been with The New England Center for Children since 1996 and currently serves as the director of research. He is also a clinical assistant professor in Northeastern University's master's program in applied behavior analysis. Dr. Ahearn's research interests include assessment and treatment of severe problem behavior, resistance to change, behavioral economics, and pediatric feeding difficulties. His work has been published in a number of journals, including The Lancet and the Journal of Autism and Developmental Disorders. He also recently published a book chapter in Making a Difference: Behavioral Intervention for Autism. Dr. Ahearn is currently on the Editorial Boards for the Journal of Applied Behavior Analysis and Behavioral Interventions and has served as a guest reviewer for several other journals. |
In the first experiment, 30 children, ages 3 to 8 years, will be targeted to participate. All children will have a diagnosis of an autism spectrum disorder and will be enrolled in the Intensive Instructional Program at the New England Center for Children. Prior experience with video modeling as a teaching technique will not be a prerequisite but priority will be given to children who have had difficulty learning using video modeling in their educational programming.
Experiment 2: The purpose of Experiment 2 will be to identify subjects in Experiment 1 who were unable to perform accurately on the delayed match-to-sample task and also were unable to imitate a video model. These subjects will then be taught generalized delayed match-to-sample to see if this will translate into better performance on video modeling imitation tasks.
Ten to 15 children, ages 3 to 8 years, will participate in the experiment. These children will have been administered the pre-assessment battery and will have a profile that includes mastery of simultaneous matching but deficits in delayed matching and failure to learn using video modeling.
What is the Practical Relevance?
Evaluating more children on delayed match-to-sample tasks, which historically relate to accuracy in remembering, and how well they learn video modeling will provide evidence on the relationship between the two skills and could lead to a better understanding of the prerequisites necessary for learning using video modeling. The outcome of these experiments may lead to specific teaching procedures to improve learning using video modeling.
By providing specific guidelines for assessing prerequisites for effective learning using video modeling and developing teaching procedures to give children the skills they need to use video modeling in their daily instruction, Drs. Ahearn and MacDonald will also be expanding the educational options for all children with autism.
They expect this study to contribute to the general understanding of and ability to provide effective instruction using video modeling for all children with autism. The results will likely translate into a transportable technology available to those working with persons with autism through dissemination in presentations and publication. This research could result in a quick way for educators to assess whether video modeling is an appropriate teaching procedure for specific children and describe the necessary prerequisites for video modeling instruction so that autism service providers can incorporate them into their teaching practices.
RUN FOR AUTISM News
Don’t Remember the Alamo, RUN It for OAR
RUN FOR AUTISM already has a number of runners participating in Rock ‘n’ Roll events throughout the country, including a sizable team who signed up for this year’s San Antonio event. Now in its second year, the marathon and half marathon will take place on November 15, 2009. Like other Rock ‘n’ Roll events, the San Antonio event is directed by Elite Racing Inc., the highly regarded Events Management Division of Competitor Group.
Doug Marocco, director, RUN FOR AUTISM, who attended last year’s event, notes, “Rock ‘N’ Roll San Antonio is a great destination event for the end of your race season. Whether you are doing the full marathon or half, both races have the potential to be a personal record, because the weather is cool and the course is flat. It is especially a good first timer’s event. With live music, spirited cheer teams every mile, and a post-race concert at the Alamodome, this is one race that you’ll enjoy from start to finish!”
San Antonio has more to offer than just a race. Home to the legendary Battle of the Alamo, the city has more recently become known for its mix of authentic culture, rich history, lively nightlife, and family fun. The seventh largest city in the United States, San Antonio has a number of attractions in addition to the Alamo, including the Riverwalk, Sea World, and Six Flags Fiesta Texas, plus a wide variety of museums, shopping, entertainment, and recreational activities.
OAR’s participation in Rock ‘n’ Roll San Antonio includes a booth at the two-day race expo, which is held on Friday and Saturday at the Alamodome sports arena where the post-race concert also takes place on Sunday evening. In addition, if the RUN FOR AUTISM team numbers more than 50 runners, OAR will also have a team tent in the finishers’ village.
“OAR’s involvement in the Rock ‘n’ Roll series allows participants of Elite Racing events an opportunity for an additional charity choice to dedicate their run,” says Dave Hussa, director of charity relations for Elite Racing, Inc. “Also, since the RUN FOR AUTISM is involved in other high-profile races throughout the country, our Rock ‘n’ Roll events benefit from the partnership when OAR promotes its programs at race expos during the year. We are happy to have OAR runners at a number of our events this year and look for more involvement in years to come.”
For more information on the RNR San Antonio race or other RUN FOR AUTISM opportunities, please go to our Web site at: www.runforautism.org or e-mail run@researchautism.org with any questions.
Setting RUN Records: With Thanks to Our Runners!
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| OAR's Autism 10K Team Challenge is looking for teams of four or more
individuals to
join us for the Marine Corps 10K. Come have fun with OAR and the other participants and do a good deed by raising money for OAR. |
By the end of June 2009, OAR has beaten its 2008 mid-year records for runners and money raised. So far this year, 650 runners have participated or committed to the RUN FOR AUTISM and have together raised over $200,000.
Better yet, OAR still has charity entries available for its original event, the Marine Corps Marathon, which will take place on October 25. In addition, OAR has created the Autism 10K Team Challenge, which is seeking teams of four or more participants to walk or run and raise money for autism together in the Marine Corps 10K. Individuals are also welcome to join the 10K team and be part of the Marine Corps Marathon excitement.
Although the major team events take place in October, this RUN FOR AUTISM year has already seen a number of stars who have supported the RUN FOR AUTISM in the events of their choice. These are some of those stars and highlights from the year to date:
Chevron Houston Marathon, Half Marathon & 10K – January 18
A small but dedicated group of runners kicked off the 2009 RUN FOR AUTISM season in Houston and raised $22,000. Last year’s top Houston fundraiser, Rev. James Grace, ran again this year, raising $8,000.
Rock ‘n’ Roll Arizona Marathon & Half Marathon – January 18
Thanks to the efforts of The Sharks, a team of associates from the law firm Lewis and Roca, LLP, put together by Caryn Tijsseling, this Rock ‘n’ Roll event included 15 RUN FOR AUTISM team members. This first-time participation sets the stage for an even bigger team in 2010.
ING Miami Marathon, Half Marathon & 5K – January 25
The RUN FOR AUTISM returned to Miami for the third straight year, thanks again to the leadership of OAR supporters Rod and Susan Lauredo. The team raised $5,000, led by first-time runners Mike and Allie Estevez, Orlando Cabrera, and Mickey Keenan.
Bank of America Shamrock Shuffle – March 29
First-time OAR runners Karen Luka and Sarah Kelly led the OAR team, having chosen the Shamrock Shuffle as their primary fundraising event for 2009. A number of other alumni and current team members took part as well.
Marine Corps Historic Half – May 17
A team of 18 runners raised $7,000 for this event, led by top fundraisers Tiffany Smedley, who drove up from Powders Springs, GA, and Janet Usala, a long-time OAR conference attendee from Annandale, VA. OAR runner Aaron Church, of South Riding, VA, had a second place overall finish in a field of 5,000 finishers with an outstanding time of 1:10: 05.
Rite Aid Cleveland Marathon, Half Marathon & 10K – May 17
OAR returned to Cleveland for the second year with a record team of 70 runners and walkers who raised more than $31,355 for autism research. That’s more than six times the number of runners on OAR’s 2008 team and almost 10 times the money raised.
These increases were largely due to the efforts of Jessica Hirz and her team, “Running for OAR on the Shore,” which included 42 runners and walkers made up of her friends and teachers and parents from Lear North Elementary School where she teaches. Three-time RUN FOR AUTISM participant Rod Lauredo was the top individual fundraiser for the event, raising nearly $7,000.
iRUN FOR AUTISM
iRUN FOR AUTISM allows participants to choose any event and dedicate their efforts to funding autism research. From small town 5ks to 100-mile endurance events and even events out of the country, individual team members have raised a combined $14,439 so far.
- Kyra Ferber from Massachusetts ran the Barcelona Marathon in March, OAR’s first participant ever in the race. It will just be a matter of time before RUN FOR AUTISM has someone “running with the bulls” in Pamplona as well.
- In May, Mike Raczka from Illinois, ran the inaugural Wisconsin “the cheesiest” Marathon in May and looks forward to joining a large team in the Chicago Marathon in 2010.
- Rick Poplaski is doing the same local event he always has, with a goal of breaking his own personal record at the Falmouth Classic in August. This year, though, he’s running for his son, Ty, and has already raised more than $1,600 for OAR.
- If you think that running a marathon is something, then James Stout takes RUN FOR AUTISM to the extreme by completing his second 100-mile ultradistance race. You will see James later at the much shorter Marine Corps Marathon.
If you are not able to make it to a RUN FOR AUTISM partner event, you can RUN FOR AUTISM anywhere in the world, whether it’s Barcelona, your hometown, or somewhere else. For more information, go to our website at: www.researchautism.org/news/run/races/RunAmerica.asp; email: run@researchautism.org; or call: 1-866-366-9710.
She’s a Winner in OAR’s Book
Meet iRUN FOR AUTISM Swimmer Luise Easton
Last year, Luise Easton decided that something special was in order to celebrate her upcoming 70th birthday. “I wanted to find something unique, and I didn’t want to jump out of an airplane, so I chose the Alcatraz Sharkfest,” she says.
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Photo courtesy of Sandra Cannon |
The Alcatraz Sharkfest is a 1.5 mile swim from the historical prison in the San Francisco Bay. On August 15, Easton will join more than 600 other swimmers and brave the Bay’s notoriously cold, choppy waters and strong currents in an attempt to reach the shore.
To make the event even more meaningful, she is dedicating her effort to show support for her 5-year-old grand-niece, who has been diagnosed on the autism spectrum. Easton first learned of OAR and the RUN FOR AUTISM program at the Cleveland Marathon Expo in 2008. “I met Mike [Maloney] at the Expo and told him that I used to do triathlons but I’m not a runner anymore,” she explains. “I wanted to support autism research, so I asked if I could swim for autism instead!”
With that, Easton joined the growing list of supporters who are biking, climbing, walking, and more to raise money for autism research through the iRUN FOR AUTISM program.
A swimmer since age eight, Easton has a lifetime of experience in and around the water, including 25 years as a swim instructor at Berea High School (Ohio) and a few years as a coach for both synchronized and competitive swim teams. She is an active participant in U.S. Masters Swimming events and frequently participates in open-water swimming events. “Sometimes I win because there aren’t too many people my age doing these events so, while sometimes there are other people, sometimes I win by default!”
Easton has two goals for her Alcatraz swim: “My goal is to finish, and to do this for my grand-niece. I chose OAR for her.” If you’d like to support Easton’s effort, donate online at www.firstgiving.com/luiseeaston.
“I Have Autism, What’s Your Excuse?”
Meet James Stout, the Runner Who Wants to Know Your Answer to that Question
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Stout completed his second 100-mile run for OAR at the Massanutten Mountain Trails 100 Mile Run. When he finished, he had run 100 miles in 34 hours, 13 minutes, and 57 seconds and raised almost $1,500. |
“I guess the mere fact that I finished is enough reason to say my race went well. It was definitely a tough course with steep climbs over rocky terrain. And nearly every type of weather scenario imaginable: first humid, then cool, thunderstorms, torrential downpours, hail,plenty offogand finally some sunshine at the end. Somehow I prevailed and finished,” says James Stout about his recent 100-mile run at the Massanutten Mountain Trails 100 Mile Run, one of the most challenging courses in all of ultra-marathoning.
Stout ran to raise awareness about autism and to raise money for OAR. When he finished, he had run 100 miles in 34 hours, 13 minutes, and 57 seconds and raised almost $1,500.
The Massanutten Run wasn’t the first tough course that Stout has faced. While running 100 miles tests a runner’s endurance and stamina, Stout has faced much bigger challenges in his life and overcome them, beginning with being raised in an abusive household where he was told that he would never amount to anything.
When he moved to Washington, DC in 2001, he found a life and friends that proved that prediction wrong. And he found a calling that let him prove every day that he could triumph. That calling was running.
“I started working out with a trainer, Bryan Bowles, in August 2001. Since he was an active Ironman, I would often hear about his many running exploits and was eventually lured into my first marathon in May 2003.”
Stout ran and ran, completing one 100-miler and almost completing a second when an injury stopped him, a couple 50-milers, and 16 marathons. As he ran and built a life in DC, he continued to battle with depression, Asperger Syndrome, and other symptoms that were harder to diagnose.
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Pictured here at mile 36, James Stout went to finish the Massanutten Mountain Trails 100 Mile Run. When he was done, he had run 100 miles in 34 hours, 13 minutes, and 57 seconds and raised almost $1,500. |
None of that stopped him from running. And from running to help others. Stout picked nonprofit organizations to raise money for as he ran. But he had not yet found an organization related to autism. “Since I myself have Asperger Syndrome, I had always hoped to run at least one of my hundred-mile runs for a charity related to autism.” When he discovered the OAR booth at the expo for last year’s Marine Corps Marathon, he was excited to learn of the RUN FOR AUTISM program and the amount of support OAR offered each runner who participated. “Once my entry into Massanutten was guaranteed in December 2008, I joined the iRUN FOR AUTISM team and set up my Firstgiving webpage.”
Stout had found a cause that linked his passion and the disability that had been one of his biggest challenges. “I know I have social limitations in life and that what for most people is quite simple is for me an obstacle to overcome. Yet somehow I am able to run. As someone on the autism spectrum, I run for all the others who may not be able to run for themselves.”
“I also run to motivate those who are not afflicted with autism to do or give more than just the bare minimum. If a guy with Asperger Syndrome can run a 100-mile race, what then could the world at large accomplish if it gave more than it first thought possible towards better research and treatment?”
In October, Stout will join OAR friends and runners as part of the Marine Corps Marathon RUN FOR AUTISM team. He’s still running and still raising money for OAR. You can be part of his team by contributing at www.firstgiving.com/runjamesrun.
Profile: The Story of the May Institute Keeps Adding Happy Endings
The story of May Institute starts with a problem in need of a solution. In the 1950s, when Dr. Jacques and Marie Anne May’s twin sons were diagnosed with autism, there wasn’t much help or support waiting for the family. In fact, parents were often blamed for their children’s diagnoses and these children were typically institutionalized for life.
But, like many motivated parents reading this article, the Mays were not about to turn their backs on their children. They created a community-based school for children with all types of disabilities.
Today, that story continues to have happy ending after happy ending as the Institute has expanded and replicated its programs and services toward the goal of providing children and adults with disabilities with support, education, and the chance to live as independently and productively as possible.
Fast Forward to the Present
The May Institute is among the largest, most respected, and innovative behavioral healthcare organizations in the country, offering services at more than 200 sites to more than 25,000 children and adults, and their families each year. The Institute is dedicated to serving individuals of all ages, from infancy to old age, says its Chief Clinical Officer Dennis Russo, Ph.D., ABPP. “We cover the life span, from our pediatric centers and home-based early intervention services to our schools to our adult residential living and vocational programs.”
In addition to working with people with autism spectrum disorders (ASD) and other developmental disabilities, May Institute staff work with individuals with brain injury, mental retardation, and behavioral healthcare needs. Other services include home-based early intervention for infants and toddlers, special education schools for children and adolescents with ASD and brain injury, counseling for individuals of all ages, consultation in home and school settings, and geriatric day health services for older adults with mental illness.
“The Institute’s philosophy is grounded in its unique blend of science and service,” Dr. Russo explains. Its work extends beyond direct service to training and research.
The organization’s ongoing system of comprehensive training and professional developmentis designed to impact all staff, ensuring a continuity of consistent, highly effective care.They also provide continuing professional education for psychologists and social workers, training for educators, and workshops and seminars for families.
In 1997, the Institute created the May Center for Applied Research to direct and support comprehensive research activities throughout the organization. In the past 25 years, Institute staff has published more than 370 articles and books, most recently Effective Practices for Children with Autism. The organization also works in partnership with more than 55 universities, hospitals, and human services agencies worldwide.
Another critical element in the Institute’s success is its ability to tailor its services, Dr. Russo says. “We ask what people need rather than offering a program. ‘Do you need a lot of services or just a few?’ ‘Do you need to have services in your community or elsewhere?’ We can create a plan for whatever is most needed.”
Dr. Russo also believes that the diversity of people that May Institute serves brings a diversity of experience, talent, and expertise to the Institute, adding value for all those whom come for services or consultation. “We can offer a quality of care that is hard to find elsewhere. For instance, when we look at someone with autism, we look beyond that diagnosis to comorbidities and family structure to get a whole picture of the individual and his or her environment. With that broader look, we can provide the most appropriate and effective services.”
On any given day, Dr. Russo continues, there will be video conference peer reviews taking place with Institute professionals from different specialties. “We can offer feedback and clinical supervision from our national headquarters to teams across the country, from Georgia to California.”
Into the Future
Because of its emphasis on training and building systemic capacity to provide research-based services, the Institute sees its next challenge as preparing a workforce to ensure that all individuals with disabilities and their families receive the services they need. “There is a great need for services but few trained professionals to provide them. We are working with a number of universities and colleges to develop a broader range of educational venues, from the traditional classroom to the workplace to distance learning.
“The goal is to help organizations--like schools and service providers--offer the best available care and evidence-based practices. We want to assist them in designing intelligent systems of care so that they can identify at-risk children early and then provide the services they and their families need.”
You can find out more about May Institute at www.mayinstitute.org
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