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March 2011 |
PerspectivesCommitted to Scientific Rigor and Strong Ethical Principles: Reflections from the OAR “Family”
Ann Wagner, Chief of the Neurobehavioral Mechanisms of Mental Disorders Branch, NIMH, and Scientific Council Member “OAR has a unique niche in the autism research funding world, since the emphasis is on applied research. While the grants are smaller than the typical federal research grant, they provide funds for researchers at institutions that do not typically compete for federal funding (e.g., programs that provide services), and they provide funds for researchers to gather preliminary data that supports competition for larger federal and non-federal grants,” says Ann Wagner, Ph.D., Chief of the Neurobehavioral Mechanisms of Mental Disorders Branch in the Division of Pediatric Translational Research and Treatment Development at the National Institute of Mental Health (NIMH) and a member of OAR’s Scientific Council since 2004. Her branch at NIMH directs and supports research that identifies mechanisms responsible for mental disorders, including the genetic, neural, behavioral, and environmental components underlying childhood-onset mental disorders. Dr. Wagner is also chair of the National Institutes of Health (NIH) Autism Coordinating Committee, which coordinates autism-related research among several NIH institutes. Having worked for NIMH since 2001, Dr. Wagner knows just how competitive obtaining federal funding is. “It can be difficult for researchers without strong institutional support (for either the application process or for research activities) to obtain funding that enables them to devote part of their time to research. OAR provides an important avenue for funding for these investigators, and for disseminating the information that is obtained through research.” Dr. Wagner joined the council after meeting Peter Gerhardt, Ed.D., chair of the Scientific Council, in 2002. “I was impressed by Peter’s knowledge and his commitment to using science to improve the lives of people with autism spectrum disorders (ASD) and their families. So, when he subsequently approached me to participate on the council, I knew that he would devote the same commitments to his work for OAR. I also knew that he was a lot of fun to work with, and by extension, I thought that the committee would be staffed with equally devoted and fun people. And I was right.” “OAR is a wonderful example of individuals working together to improve the lives of people with ASD and their families. In addition, through a commitment to scientific rigor and strong ethical principles, OAR disseminates information on evidence-based practices in an effort to provide the most accurate information possible to people who are making decisions about interventions.” SaluteFor Justin Osborne, It’s Mission Possible
“Nearly three years ago I did not know a thing about autism,” says Navy Petty Officer First Class Justin Osborne. That was the day the doctor diagnosed his son, Jacob, who will turn 5 in May, with autism. While he left the doctor’s office understanding what autism was, he and his wife, Sarah, had no idea what to do next. What they desperately needed was a guide to direct them along the path of advocacy. They found their own way, Osborne reports, using books, articles, Google, and their community of friends, family, and military contacts. Osborne, who joined the Navy in 2001, met his wife while he was stationed in Virginia Beach, Va., and they married in 2002. Three children, Amilea, 7, Jacob, and Mary, who will be 3 in April, soon followed. “Jacob started showing signs of autism at 14 months and was officially diagnosed shortly after his second birthday. He received early intervention therapy for about a year and then started applied behavior analysis (ABA) therapy when he was 3.” His son is just below grade level academically but is developmentally delayed in communication and socialization. The First Step of Many
He is currently in the process of establishing a channel to pass needed information along to the families who need it and create a network of Navy EFMP families in the Washington, D.C. region. He also organized support groups that assist military parents in locating military and local community resources for their children and help them navigate through the Navy EFMP application process. It’s obvious from his words and actions that Osborne is committed to the Navy and to families like his who need support and information for their children with special needs. He’s a man with a mission and on his way to fulfilling it. Exceptional Commitment As team captain for his office, Osborne motivated the staff of 19 to raise more than $9,000 for the campaign, 223 percent above the original goal. “I personally talked to each member of my office about the CFC campaign and its importance. I informed them of various organizations and what services they provided to the community. I notified them about when and where CFC organizations were coming by to visit our area. I always made myself available to answer any questions that my colleagues may have had. That personal connection led to 100 percent participation.” He believes in participation by volunteering as well. He gave more than 100 hours of his time in 2010 to nonprofit organizations like Homes for Our Troops Organization, the Washington, D.C. chapter of the U.S.O., and the Learning Disabilities Association of Montgomery County. Osborne would be the first to admit he doesn’t have all the answers to the questions that military families with children with special needs may have but he’s happy to be the one those families can count on to find the answers, support, and information. OAR NewsOAR and Behavioral Directions Offer IEP Workshop for Parents and Professionals OAR is not the only autism group turning 10 this year. Behavioral Directions, LLC, an autism consulting firm committed to using evidence-based procedures in nearby Herndon, Va., also shares this milestone. To mark the shared anniversary of service to the autism community, OAR and Behavioral Directions are excited to announce and invite you to their jointly sponsored seminar, “Maximizing Success: Outcome-Based IEP Goals,” on Tuesday, April 26, from 6:30 to 9:00 p.m. at the George Mason University Psychological Services Center in Fairfax, Va. The workshop will present a brief overview of the Individualized Education Program (IEP) process, address the importance of and provide guidance on writing measurable goals, and offer an interactive writing exercise. Taught by Jane Barbin, PhD, BCBA-D, founder of Behavioral Directions, and Christine Crowell, MA, BCBA, the training is appropriate for both parents new to evaluating IEP goals and professionals with many years of IEP experience. Parents will walk away from this event ready to evaluate goals and create an outcome-based IEP for their children. Professionals will learn how to write measurable objectives and understand the relationship between goal and objective performance criteria and outcome measurement. To make this educational opportunity accessible, the workshop fee is only $15 when you pre-register or $25 the day of the event and includes dinner. Size constraints limit this opportunity to the first 40 registrants. To learn more and register, visit www.researchautism.org/news/otherevents/IEPSeminar.asp.
It’s Better to Know! -- or ¡Es Mejor Saber! –is the title and theme of OAR’s first fotonovela, which is in final galley form and scheduled to be published by the end of April. For more than a year, OAR, in coordination with Porter Novelli and the Learn the Signs. Act Early. campaign sponsored by the Centers for Disease Control (CDC), has been working with The Fotonovela Company on the project. This informational booklet presents the story of a Latino family and their friends as their lives touch and they observe and discuss various aspects of their children’s development, in a colorful, visual format. In the story, husband and wife, prompted by one of the grandmothers, are forced to confront concerns about their son, Carlitos, who does not seem to respond to his name. The ensuing discussions within the family, among friends, and ultimately with Carlitos’ doctor discuss the importance of knowing your child’s developmental milestones and talking to a doctor should any concerns arise. When in doubt, ask questions. It is better to know. It’s Better to Know! will be published in English and Spanish, 36 pages long, with color photographs. The content includes the story followed by a didactic supplement that expands on developmental milestones in the words of the characters in the story. The content is based on the information provided by the CDC’s Learn the Signs. Act Early. campaign. Once released, it will be available for download from both CDC’s and OAR’s Web sites. In addition, OAR will have printed booklets available for distribution through its Latino Outreach Program. For more information about It’s Better to Know!, please contact Allison Gilmour, director, programs and community outreach, at (703) 243-9762.
On Monday, June 6, OAR Chairman Jim Sack will host his 10th Annual Chairman’s Dinner, a benefit that raised a record $95,000 last year and more than $600,000 since 2002. A month before that on May 10, OAR Vice Chairwoman Lori Lapin Jones will host a Vice Chairwoman’s Reception in East Hills, Long Island, N.Y. Together, these two events, one a first, the other a tenth, will raise more than $100,000 and support OAR’s 2011 research, information, and scholarship programs. Vice Chairwoman’s Reception The reception will take place on Tuesday, May 10, from 6:30 p.m. to 9:30 p.m. at Table 9, 290 East Cove Road, East Hills, N.Y. Tickets are $200.00. Anyone interested in attending should contact Alyssa Kruszyna, director, business operations and communications, at OAR, (703) 243-9717. 10th Annual Chairman’s Dinner
The application deadline for OAR’s2011 Schwallie Family Scholarship Program is closing fast. All applications for must be submitted online using the new system by 11:59 p.m. EDT on April 29. The Schwallie Family Scholarship Program offers one-year, $3,000 scholarship awards to deserving individuals diagnosed on the autism spectrum and enrolled or accepted to an institution of higher learning. Qualifying institutions include two- or four-year undergraduate colleges and trade, technical, or vocational schools. Eligible individuals need to be enrolled on at least a part-time basis (six credits) or be working toward certification or accreditation in a particular field (e.g., studying to be a paralegal). Past recipients of a Schwallie Family Scholarship or immediate family members of any person serving on OAR’s Board of Directors or Scientific Council are not eligible to apply. OAR will announce the scholarship awards by the end of June 2011 and award the funds for the following academic year in July 2011. For more information, or to complete the application, visit www.researchautism.org/news/otherevents/scholarship.asp.
In 2003, OAR produced the very first in its Life Journey through Autism guidebook series: A Parent’s Guide to Research. OAR was thrilled to have this wonderful, ready-to-use document at people’s fingertips, available for download 24/7 in PDF format. The success of the program ensured that more guides were to follow, including An Educator’s Guide to Autism, An Educator’s Guide to Asperger Syndrome, A Guide for Transition to Adulthood, A Parent’s Guide to Assessment. With A Guide for Military Families, the latest guidebook, OAR included the use of PDF bookmarks, which makes scrolling much easier. Given the length of previous guidebooks, OAR decided to update all of its PDF documents with the bookmarks, ensuring ease of use for the whole Life Journey series. PDF bookmarks act like a clickable table of contents. By pressing the F4 key on the computer keyboard, readers can toggle a contents panel on the left-hand side to navigate through the document. Now, a reader can find a particular chapter, appendix, or reference in seconds rather than spending an hour searching. To view these more readily navigable versions, go to www.researchautism.org/resources/reading/index.asp.
OAR celebrated its most successful Casino Night ever on February 26, hosted by Chris and Theresa Waddell in their Arlington, Va., home. More than 70 people attended and tried their luck at black jack and craps. Guests drank champagne and nibbled delicious desserts while gambling with “OAR dollars.” No money passed hands during this casino night, only chips, and big winners earned prizes. Gambling guru, Julie Katz, landed the top gambling prize, trading in her stash of chips for a gift certificate to Olive Garden. Chips aside, OAR came away the biggest winner. Thanks to donations from those who attended and the proceeds from the silent auction, which included prizes like tickets to the Newseum, a Faberge egg-style pendant, and dinner certificates to a number of local restaurants and eateries, Casino Night raised almost $8,000 for autism research.
Alex van Wees, a 2010 Ohio University graduate, recently joined OAR as a RUN FOR AUTISM coordinator. She comes on with a big job already on her to-do list, namely coordinating the first-ever Rite Aid Cleveland 5K presented by OAR, on Saturday, May 14. She brings a bachelor’s degree in business administration-marketing and the desire to “raise awareness of OAR’s applied research focus. Educating family, friends, and educators is so important in order for people on the spectrum to feel comfortable in daily life.” It’s not every business major who would think of going to work for a small nonprofit organization, but van Wees says that she was motivated by work she did as an employee relations manager for Ohio University’s recreation center. “One of my main tasks was to coordinate volunteer opportunities for other students in the southeast Ohio region. I loved recruiting students who may not have thought of volunteering and watching them really enjoy giving back to the community. I feel that volunteering and working for a non-profit are two of the most rewarding things that I have ever done.” She also recalls the time she volunteered for a Special Olympics track meet, handing out medals to runners. “After the meet, my friend and I went to the grocery store where we saw one of the cart handlers smiling from ear to ear and wearing the medal that he received earlier that day. He was so proud of himself for winning that medal. You could see the positive impact that the track meet had on his day. It still makes me smile every time I think about that man and how happy he was.” What she has most noticed so far are the huge hearts of OAR’s staff, runners, and volunteers. “Building relationships with people who care and do so much and learning about how autism has affected their lives has been one of the best parts of my job so far.” Born in the Netherlands, van Wees was raised in Medina, Ohio, and recently moved to Rosslyn, Va. “I have a nice 15-minute walk to and from OAR every day.”
In 2011, OAR is hoping to expand its list of authors and contributors to The OARacle by building a bank of people who would like to submit articles for publication. OAR invites people with autism, parents or siblings of people with autism, clinicians, and educators to submit first person or “how to” articles (750 words or less) related to autism, research, or research to practice. If interested, contact Alyssa Kruszyna at 703-243-9717. How-ToBy Frank Cicero, Ph.D., BCBAToilet Training Children with ASD: Increasing Independence
Toilet training is a pivotal skill for a person with autism because mastering the skill can significantly increase a person’s independence in his or her home and community. It is also one of those skills that parents of children on the autism spectrum struggle with. The good news for parents is that it becomes easier once you realize that you teach the skill just like any other skill -- through behavioral intervention techniques. Prerequisite Skills Urination Training
From the first day that the treatment package is implemented, data are collected on the frequency of appropriate responses, frequency of accidents, and percentage of urination on the 30-minute schedule. Treatment decisions and modifications should be made based on a daily review of the data. Keep in mind that toilet training is an intensive procedure that usually requires the dedication of a trainer for a number of hours each day. It is also helpful to conduct the training directly in the bathroom with the child wearing limited clothing. Bowel Training There may be several reasons why a child is not bowel trained, the main reasons being medical issues, noncompliance, skill deficits, adherence to a ritual or routine, fear of eliminating in the toilet, and using bowel “accidents” to serve some other function (i.e. to escape demands, to gain attention from others, etc.). Whether or not you need a toilet-training plan, behavior plan, or medical intervention will depend on the reason why the child is not yet trained, so an assessment period of at least two to four weeks must precede any training plan. During this time, data and information are collected and analyzed to determine the function of the problem. Obviously, if the cause is determined to be medical, seek the recommendations of an appropriate physician. If the cause is determined to be a skill deficit, initiate a training package consisting of prompted toilet sits (limited to the most likely times of day when your child needs to have a bowel movement), positive reinforcement for success, visual cues to teach the child what she should be doing on the toilet and once again either prompting to the toilet or punishment for accidents. With a ritualistic behavior or fear of eliminating, try a gradual desensitization plan where you introduce appropriate toileting in small steps, offering reinforcers for success along the way. For noncompliance, the first step is often increasing the potency of the reinforcer being offered for success and initiating a punishment-based component for accidents. If that does not work, you can try a procedure whereby suppositories and enemas are used as prompts. For this procedure, always seek the advice and guidance of a medical professional. If the bowel “accidents” are serving some other function, you do not need a toilet training intervention, but rather a more traditional behavior plan such as that which would target escape-maintained, attention-maintained, or access-maintained behaviors. Seek the advice and guidance of a behavior analyst in these circumstances. Whichever plan you choose for bowel training, you must watch closely for any signs of constipation. Long-term constipation will not only result in a medical issue that will need to be corrected, but will undermine your treatment plan because the eventual bowel movement is likely to be painful, thereby punishing any compliance with going on the toilet. It is suggested that if the child does not have a bowel movement for three days past his or her typical schedule that the bowel training plan be temporarily placed on hold until bowel movements become regular. Then, it is time to start again, making modifications to prevent future episodes of constipation. Keep in mind that with good behavioral intervention techniques, a commitment on the part of the trainers, good data collection and analysis, consistency, and some advice from professionals if needed, toilet training can be mastered relatively easily and rapidly. Applying ResearchUsing Picture or Video Schedules for Successful Transitions Picture schedules are a favorite easy-to-use intervention for parents and teachers. These visual supports are easy to create, portable, durable, and easy for children to use independently. Video modeling is quickly becoming another frequently used intervention. Both strategies focus on the visual strengths of individuals with autism. In a recent article published in the journal, Research in Autism Spectrum Disorders, researchers investigated the use of picture schedules and video schedules to facilitate independent transitions in high school students with severe autism. All four participants in this study exhibited undesirable behavior during transition times. Teachers set up picture schedules and video schedules for transition times throughout the day. Picture schedules were set up by:
Teachers also set up video schedules for the students by:
All students increased independence during transition using the video or picture schedule. How can parents and teachers decide which strategy to use? Students who look away frequently or have difficulty with sustained attention may be better suited to use picture schedules. Those who enjoy watching films and can sustain attention may benefit more from video schedules. Video schedules do have some obvious limitations. They may be more difficult to produce and less transferable to different settings than picture schedules. Either option, however, offers a great visual strategy for increasing independence and desirable behaviors in individuals with autism. Reference Cihak, David F. (2011). Comparing pictorial and video modeling activity schedules during transitions for students with autism spectrum disorders. Research in Autism Spectrum Disorders 5(1) 433-441. Research 2011A Closer Look at 2010 OAR-Funded Research Study: Improving Emotion Recognition Skills in Children with ASD: A Test of a New Intervention Amount of OAR Funding: $29,999.00 Researcher: Karen Hobden, Ph.D., Research Associate and Core Program Coordinator, Developmental Disabilities Institute, Wayne State University Timeframe: This study began in January 2011 and will be completed by December 2011. A research summary detailing the results of this study will be submitted to OAR by March 2012. Purpose: The proposed study will examine the effectiveness of a new intervention designed to improve emotion recognition skills in children with autism spectrum disorders (ASD). “The Transporters” is an animated children's series developed in the United Kingdom that features vehicles with the actors’ faces. The series, which is available on DVD, consists of 15 five-minute episodes each featuring a different emotion or mental state. The proposed research will examine the effectiveness of using “The Transporters” as a tool to improve emotion recognition skills. Why Is This Study Needed? Study Methodology In Brief The DVD package includes 30 interactive quizzes and a guidebook for parents to use to facilitate their children's learning. The effectiveness of the British version was examined in a sample of children with ASD in the United Kingdom. Twenty children were given copies of The Transporter DVD and asked to watch at least three episodes every weekday for four weeks. Participants' emotion recognition and vocabulary were tested before and after the intervention. Participants exhibited significant improvements in emotion recognition. In Dr. Hobden’s study, three groups of 20 children (aged 3 to 8) will be recruited. The groups will consist of two clinical groups (ASD intervention and ASD control) and one group of typically developing children (typical control). Children in the ASD intervention group will be asked to watch at least 3 five-minute episodes every weekday for four weeks, for a total of at least 15 episodes per week. Parents will be asked to keep a log of the number of episodes their children watch. Children in the ASD control and typical control groups will receive no intervention. Emotion recognition skills will be assessed at three time points: before the intervention, immediately after the intervention, and three months after the intervention. The results will be analyzed for changes in emotion recognition scores over time as a function of group membership while controlling for effects of age, gender, and verbal IQ. Researcher  Karen Hobden, Ph.D., has been a research associate and coordinator of the Dual Diagnosis Project at the Developmental Disabilities Institute at Wayne State University since 2006. She has a doctoral and master’s degree in social psychology, with more than 15 years experience as a project manager in the field of mental health, including a five-year, longitudinal study of mental health outcomes in homeless youth and a 10-year follow-up of dementia in a representative sample of Canadian elderly.News from the RUN FOR AUTISMCome Break Some Records with OAR in Cleveland The first ever Rite Aid Cleveland 5K presented by OAR, on Saturday, May 14, will start and finish in the Cleveland Browns Stadium. In fact, 5K and Kid’s Run participants will be the only Cleveland Marathon Weekend participants who can brag that they started and finished at the famous site. More than 300 runners and walkers will also have bragging rights as part of the largest RUN FOR AUTISM team yet (until another team breaks the record. Takers, anyone?) as they take to their respective courses on that May weekend. If you are feeling adventurous, you should make the weekend a double. A “Cleveland double,” that is, by participating in the Cleveland 5K on Saturday and one of Sunday’s races -- the marathon, half marathon, or 10K. Doing a double brings rewards beyond the accomplishment of participating both days—OAR will pay your 5K registration fee. Sign up for the team by contacting RUN staff at run@researchautism.org or call RUN Coordinator Alexandra van Wees at 703-243-9710.
The RUN FOR AUTISM has had an action-packed first quarter, with three races selling out. One of OAR’s major fall events, the Marine Corps Marathon, opened registration earlier than ever, on February 23. The jumpstart inspired an eager response from runners. In fact, the Marine Corps Marathon sold out in a mere 28 hours and 4 minutes—a record for “The People’s Marathon.” After opening on February 2, the Bank of America Chicago Marathon set its own record, selling out in 31 days on March 3. The Dick’s Sporting Goods Pittsburgh Marathon, an annual sell-out event to be held on May 15 this year, is also nearing capacity. The race’s half marathon and marathon relay events have already sold out, with the full marathon expected to close soon. But runners who would like to join OAR’s team can still participate in one of the October events or the Pittsburgh Marathon in May. OAR has entries available for all of the races. Details are available on OAR’s Web site at www.researchautism.org/news/run. Those interested in running the Chicago Marathon should contact Lindsey Cook for more details, and runners seeking entry into the Marine Corps Marathon or one of the Pittsburgh events should contact Chelsea Steed. Both coordinators can be reached at run@researchautism.org. Why I RUNGoing the Distance…and Then Some When Aaron Ledford, 28, says running is a passion, he’s not exaggerating. Most recently, he ran the Lost 118-Mile Endurance Race in Okeechobee, Fla., finishing in just under 29 hours—28 hours and 54 minutes. Over New Year’s Eve and New Year’s Day, he participated in a 24-hour run, stopping at 18 hours because of knee pain. Running isn’t his only passion. Before he set foot on either course, he signed up for OAR’s iRUN FOR AUTISM, which allows runners, walkers, bikers, and others to compete in the events of their choice and raise money for OAR.
While he enjoyed the support he got from family and friends for his recent endurance runs, Ledford, 28, says his core motivation was knowing that he was raising “a lot of money and support and awareness for autism research.” He takes autism personally. He and his wife, Braedy, are live-in caregivers for Henry, a man with autism, enabling him to live independently. “My wife is a nurse and I’m a part-time personal trainer so we don’t have special education backgrounds,” Ledford explains. But they help him with daily living skills, like cleaning and cooking, and offer company and companionship. In fact, Ledford credits Henry with training support. “He loves to go on long bike rides so I run alongside him for hours almost every day.” With the two 2011 events, he has raised just over $8,000 to support OAR’s research. He didn’t do it alone though, Ledford is quick to point out. “Curtis Reynolds, who was also a caregiver for Henry, partnered with me to raise money for OAR.” He says that Reynolds also rode his bike alongside him as he ran the ultramarathon. “He helped keep me and other runners hydrated and provided encouragement throughout the long race.” Ledford did the usual kinds of fundraising—signing up with FirstGiving and sending out e-mails to friends and family—but he also went beyond that for the ultramarathon with Reynolds’ help. “We went to local businesses with flyers and told them what I was doing and why. I got a lot of donations. For example, one firm gave $500.” He also received goods and services, which he and Reynolds raffled off, raising over $2,000 in the process. He heard about OAR and what it does from his brother, who ran the Chicago Marathon as part of the RUN FOR AUTISM team several years ago. Ledford decided to run for OAR in 2008, raising almost $2,000 then. He developed a passion for running after a boxing instructor told him he needed to lose some muscle mass to participate in a match. He’s been running ever since. “I was in college at the time and I struggled with attention deficit hyperactivity disorder (ADHD). Running helped me to control the ADHD and keep my focus. If I ran before a class, I would retain more. It became a passion and I’ve stuck with it ever since.” To read more about Aaron or donate, visit www.firstgiving.com/aaronledford3. |
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Dr. Cicero is the director of psychological services for the Eden II Programs, an applied behavior analysis program in New York State serving children and adults on the autistic spectrum. He is a licensed psychologist and a certified behavior analyst. He teaches applied behavior analysis at Caldwell College, N.J., and sits on the board of the New York State Association for Behavior Analysis (NYSABA). He frequently conducts workshops, consultations, and research presentations nationally and has been published in the areas of toilet training and developmental disabilities. 
