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November 2010 |
Message: OAR's A-Team Comes ThroughBy Mike Maloney, OAR Executive Director"I love it when a plan comes together." ~Col. John "Hannibal" Smith, The A-Team
“We did it!” With that declaration and a group “high five,” the OAR staff celebrated the end of crazy month at our first staff meeting in November. In the crazy month of October, we hosted our two largest RUN FOR AUTISM events, completed the year-long Applied Research Competition, conducted annual meetings for our Scientific Council and Board of Directors, and held a two-day Applied Autism Intervention and Research Conference, all within the span of three weeks and mostly within a demanding four-day stretch at the end of the month. As the reality of having all that behind us set in, the words of George Peppard’s A-Team character immediately came to mind, followed by more exclamations, cheers, accolades, and words of thanks – “We did it!” “Wow!” “Cool!” “Awesome!” “Well done!” “Thank you!” – as we recounted the events and accomplishments of the most demanding and important month of the year for OAR. Not only did our team do it, they did it with greater success than ever before. The RUN FOR AUTISM program welcomed more than 300 runners between the Chicago Marathon on 10-10-10, and the Marine Corps Marathon and 10K on Halloween. Personal accomplishments abound on every race weekend. This year was no different. Many runners completed their first marathon. A hearty — some might say “crazy” -- three performed the OAR October Double, running both the Chicago and Marine Corps Marathons and earning the unofficial title of “Monster” runner, as dubbed by one of their incredulous, fellow runners. Two Monster runners of a different sort, Lt. Colonel Greg Beeker, USAF, and OAR Board member, Greg Smith, kept alive their personal streaks of running for autism every year since 2003 when the program. Awesome! Well done! Running feats on the courses of the Windy City and our Nation’s Capital aside, it was their combined accomplishments off the course that elicited a chorus of “Wow!” and, most important, “Thanks!” from OAR’s leaders and staff. By the time the last OAR runner had crossed the finish line and before trick or treating had begun that evening, OAR’s 2010 RUN FOR AUTISM team had raised more than $550,000, breaking the mark set by last year’s team and pushing upwards toward $575,000. As I told the runners, their families, and friends, the dollars we count in October fund the new research studies and continuing research we will begin funding on January 1. Congratulations, and again thanks! Identifying and choosing the most promising studies to receive those precious and hard-earned funds is a year-long task for OAR’s Scientific Council, augmented by an increasing number of professional colleagues who volunteer to serve as adjunct reviewers through OAR’s three-phase process. As you will read elsewhere in this newsletter, from an initial, record field of 101 proposals, seven rose to the top as the most outstanding. Each of the applicants deserves high praise for advancing research related to autism. To the winners, congratulations! And to Peter Gerhardt, Ed.D., the chairman of the Scientific Council, the members of that group, and our adjunct reviewers, another “Wow!” Thank you and well done! Even as the Scientific Council was meeting on October 28, Alyssa Kruszyna, our director of business operations and communications by title, but more importantly at that moment, our conference coordinator, was mobilizing volunteers, checking and re-checking details, and “walking the terrain,” as we used to say in the Marines, in preparation for the conference that would begin the next day. Alyssa, ably assisted by Allison Gilmour, OAR’s new assistant director of programs and community outreach, had already laid the groundwork for another successful conference. In the course of the next two days, more than 200 people — parents, teachers, autism professionals, members of OAR’s Board and Scientific Council, and representatives from sponsoring organizations and agencies — listened intently as a parade of speakers delivered excellent presentations on a range of timely and relevant topics related to autism research, strategies for meeting autism’s challenges, and quality of life. Rather than supply my superlatives, I’ll let the testimonials from attendees do the talking. Last but not least, the Board of Directors did its part. As part of a highly productive annual meeting and reported in this newsletter, the Board elected a new vice chairperson and treasurer and figuratively tipped its hat to some outstanding, departing members. They also approved a research plan of $406,000 that included $210,000 in new grants and $60,000 for scholarships for persons with autism attending college or a post-secondary vocational-technical training leading to certification. OAR’s board members serve as volunteers and neither seek nor receive reimbursement for any expenses associated with service on the board. Well done, and thanks! Of course, the strength behind the scenes throughout was the OAR staff. When we held that first November meeting after what I call “OAR Week,” RUN Director Lily Matusiak described the Marine Corps Marathon weekend as a “beast” of an event due to its pace, the series and complexities of the various events, and its timing at the very end of OAR’s demanding gauntlet of fall events. Borrowing Lily’s descriptor, October -- and OAR Week especially — was a real BEAST for the staff team, but they tamed the beast and more. Awesome job! I could not be prouder of them for their effort and professionalism and especially for the spirit, energy, and enthusiasm they showed even on the most demanding days. To the RUN staff, Lily Matusiak, Chelsea Steed, and Lindsey Cook, and my research and programs duo of Alyssa Kruszyna and Allison Gilmour, all I have to say is: You did it! Wow! Cool! Awesome! Well done! Thank you! As we look ahead to the holidays and December, more celebrations await. On December 13, OAR will mark its ninth birthday. Then at the end of December, the festivities and sounds of the holidays will give way to challenges of the New Year and an exciting and ambitious 2011 OAR calendar. One thing October showed me is that my staff team is more than ready. Press on! Happy Thanksgiving, and best wishes for the holidays! OAR NewsOAR Announces Its 2010 Research GrantsAt its annual meeting on October 30, 2010, OAR’s Board of Directors approved seven new applied autism research studies for funding in 2011. This additional $210,000 in research grants will bring the total of OAR-awarded funds to $2.25 million since OAR awarded its first grants in January 2003. These research studies, which will be conducted by autism professionals from across the country, will examine timely issues that affect the autism community every day. This competition also included a first for OAR in its nine years of the program. Kara Hume, Ph.D., was a winner in OAR’s 2004 Graduate Grant program for her study on individualized work systems. When she was selected as one of this year’s winners as well, she became the first individual to receive both a graduate student grant and then “graduate” to an applied grant years later. The topics of this year’s new research, which will be completed in the next 12 to 18 months, include: work systems supporting adolescents and adults, telemedicine, teaching emotion-recognition skills, assessing transportation skills, the utilization of socially based reinforcers, and evaluating center versus home-based programs. “These were the seven most outstanding studies in terms of design, methodology, and potential to produce meaningful outcomes,” explains Peter Gerhardt, Ed.D., chairman of OAR’s Scientific Council. “In fact, the findings from these studies offer to provide practical tools and resources for use by parents, teachers, caregivers, and medical professionals that would enhance current methods of diagnosis, education, treatment, and quality of life.” Recipients of this year’s grants include: Principal Investigator: Anibal Gutierrez, Ph.D., BCBA-D Principal Investigator: Karen Hobden, Ph.D. Principal Investigator: Kara Hume, Ph.D. Principal Investigator: Patrick Szary, Ph.D. Principal Investigator: Marcus Thomeer, Ph.D. and Christopher Lopata, Psy.D. Principal Investigator: Laurie Vismara, Ph.D. Principal Investigator: Connie Wong, Ph.D. and Samuel Odom, Ph.D. Each grant winner will receive up to $30,000. OAR selected these proposals from an initial group of 101 pre-proposals received in response to the Request for Proposals (RFP) published last year. 38 proposals were carried through to the final review, where these seven studies prevailed as the most outstanding. OAR will post the abstracts of these studies and the RFP for the 2011 Applied Research Competition at www.researchautism.org/professionals/funded/index.asp by the end of November. For more information on the studies or for information on OAR’s research grants programs, contact Alyssa Kruszyna at 703-243-9717.
Put OAR and Autism Research on Your Holiday Giving List With the 2010 research competitions completed, the holidays fast approaching, and 2011 not far beyond that, OAR is busy getting ready to kick off its annual, year-end fundraising campaign. After the annual meetings of OAR’s Board of Directors and Scientific Council last month, OAR’s staff identified its Top 10 Funding Targets for next year. It’s an ambitious list. Some items represent the continuation and expansion of OAR’s proven programs; others offer to break new ground. OAR’s goal each year is always to do more and better while maintaining its reputation for funding research that promises to provide meaningful outcomes and programs and resources that offer high quality, evidence-based information in consumable form. The drive will combine both online appeals and a traditional letter campaign. OAR’s goal is $50,000, which will be applied toward the priority programs on the Top 10 list. December is the last month to make a donation for 2010 tax purposes. If you’re considering a year-end donation to charity and looking for programs that impact the daily lives of children and adults with autism and their families, please check out OAR’s Top 10 list. You can donate online via the Web site (www.researchautism.org/support/donate/index.asp) or by sending a check made payable to: OAR, 2000 North 14th Street, Suite 710, Arlington, VA 22201. Before you make any donations, do your research. The tips from the Federal Trade Commission excerpted below offer some good advice. OAR welcomes your (and all donors’) inquiries about its programs and finances. Please address your questions to OAR’s executive director, Mike Maloney, at the above address, by e-mail or by phone (703-243-9727). For an independent opinion about OAR, please check our Charity Navigator page at www.charitynavigator.org/index.cfm?bay=search.summary&orgid=11285. Or for more information, visit www.guidestar.org and OAR’s Web site. Thanks in advance, and best wishes for the holidays to come!
Tips for End-of-Year Giving In addition to the holidays, the end of the year is the season for charitable solicitations. With more than a half-million federally recognized charities, including OAR, soliciting contributions, chances are you’ll be asked to donate. Here are some tips from the Federal Trade Commission (FTC) to help you give wisely:
To read the full FTC Charity Checklist, go to: www.ftc.gov/bcp/edu/pubs/consumer/alerts/alt114.pdf. In addition to GuideStar, you may find information to check out charities you’re considering with the following organizations: American Institute of Philanthropy
More than 200 Benefit from OAR’s Eighth Annual Conference On October 29-30, 2010, OAR held its eighth annual Applied Autism Research and Intervention Conference at the Sheraton Crystal City in Arlington, Va. The focus of this event was to discuss the most current research that directly affects the daily lives of families and individuals on the autism spectrum. Thanks to the support of our co-sponsors, Easter Seals, Inc. and Danya International, Inc., over 200 parents, educators, therapists, and other professionals were able to attend conference events. Upon registration, each attendee received a conference bag, funded in part by Bag-It, which included a conference proceedings book. These manuals, donated by VRS Company, Inc., allowed attendees to follow along with the presentation slides from every session and will retain their usefulness long after the conference ends. Additionally, thanks to the generous support of the University of North Texas and The Lisa Higgins Foundation, conference registration costs remained affordable to many individuals whose lives are touched by autism. Attendees began their education by listening to keynote speaker Dennis Reid, Ph.D. In his instructive presentation, Dr. Reid offered useful information regarding staff training and retention. As one attendee from Wyckoff, N.J., wrote, “This was a very needed talk. I walked away with some very practical ideas for our agency staff training.”
Attendees then chose sessions from two tracks: OAR-Sponsored Research and Research to Practice. The former track featured OAR-sponsored researchers discussing the results of their research studies, while the latter presented other researchers whose studies can be directly applied to the lives of families and individuals with autism spectrum disorders. Karen Pierce, Ph.D., provided the closing keynote address. Her inspiring 90-minute talk was crammed with information including the new 1 Year Well-Baby Check-up Approach. Many attendees responded with positive comments and Tara W. of Perry Hall, Md., was no exception. After watching the presentation she exclaimed, “Wow!!! So much great information presented so clearly!” Directly following this presentation, a “Meet the Speakers” reception allowed attendees and speakers, as well as members of OAR’s Board of Directors, Scientific Council, and staff to gather to discuss the day’s events while enjoying hors d’oeuvres and viewing the many exhibits. KDH Research and Communications generously sponsored this rare networking opportunity. The reception offered a unique environment in which attendees from various walks of life and connections to autism could communicate. The second day began with keynote speaker Paul Shattuck, Ph.D., and his plenary session “Outcomes after Leaving High School.” His presentation encouraged attendees to look beyond the “now” and look instead to what tomorrow will bring. Like Friday’s keynote speakers, Dr. Shattuck received much positive feedback, such as that from Elisabet M. from Dumfries, Va. When asked about the presentation, she stated “This was good! Well presented, interesting data. You could tell he knew how to teach and how to make data understandable.” Saturday’s breakout sessions fell into one of two tracks: Education and School Age Learners or Transition and Life in the Community. The first track focused on teaching important skills to children with autism, while the second focused on older individuals who are in the process of becoming independent members of the community. This year’s extended conference format included a closing keynote address at the end of Saturday’s presentations. Stephen Shore, Ed.D., and Zosia Zaks, MS, M.Ed., teamed up to present a talk titled “Dating on the Autism Spectrum.” As successful individuals on the autism spectrum, Dr. Shore and Zaks drew from personal experience in navigating the complex road of the dating world. While extremely beneficial to those on the autism spectrum, much of the information would help anyone in any type of relationship. Thanks to a partnership with the Eden II Programs in New York and the Maryland Association for Behavior Analysis (MABA), attendees were once again able to earn both American Speech-Language Hearing Association (ASHA) and Behavior Analyst Certification Board (BACB) Continuing Education Units (CEUs) by attending this year’s conference. In addition, the Maryland Board of Examiners of Psychologists approved OAR to sponsor continuing education for Maryland psychologists. OAR would like to thank those partner organizations for their invaluable support. The Conference Proceedings book, with presentation slides from all 16 sessions, is available online. To download a copy, please visit www.researchautism.org/news/conference/schedule.
OAR Board Elects New Officers
During the annual meeting of OAR’s Board of Directors October 30, the Board elected a new vice chairperson and treasurer. Lori Lapin Jones, a member of the Board since May 2005, was the unanimous choice to succeed Madeline Millman, the founding vice chairperson, who stepped down in August. Greg Smith, another member from OAR’s class of 2005, took over as treasurer replacing Dean Koocher, another one of OAR’s founding Board members, who resigned in October after almost nine years of service. “2010 has been a year of significant change for OAR,” said OAR Chairman Jim Sack. “It’s been gratifying to see how well OAR has adjusted and kept moving forward after Peter Gerhardt’s departure in July and then losing experienced leaders like Mady Millman and Dean Koocher shortly after. We’ll miss them, of course, but with people of Lori’s and Greg’s caliber and passion following in their steps, OAR remains in good hands.” With Jones’s election as vice chairperson, she will step down as chairperson of the Scholarship Committee, a responsibility she has carried out with great enthusiasm since the program’s inception three years ago. Board member Lisa Hussman will take over as the new Scholarship Committee chairperson. The departure of two of its founding Board members reduces the number of Board members to nine. Chairman Sack and OAR are interested in expanding the Board to 11 to 12 members by the end of 2011. OAR’s Web site, www.researchautism.org/about/board/index.asp, provides general information about service on the Board of Directors. Anyone interested in applying or seeking more specific information should contact OAR Executive Director Mike Maloney at 703-243-9727 or mmaloney@researchautism.org. News from the Autism CommunityPresident Obama Signs “Rosa’s Law” On Tuesday,October 5, 2010, President Barack Obama signed into law S. 2781, “Rosa’s Law,” which changes references in many federal statutes that currently refer to “mental retardation” to refer, instead, to “intellectual disability.” This law will change references to “mental retardation” in federal laws to “intellectual disability” and, similarly, references to a “mentally retarded individual” will now refer to an “individual with an intellectual disability.” News from the RUN FOR AUTISMKickin’ Up the Fun and Funds in Arizona
That’s right; after years of collaboration and partnership in programs and research, OAR and SARRC are coming together in support of autism research and advocacy on the racecourse. Together, the two organizations will field a team of runners raising funds for autism research. A popular, fast, and flat race, the course guides participants through the streets of Phoenix, Tempe, and Scottsdale. Surrounded by beautiful desert scenery, the course is a perfect way to jumpstart the new year with high energy and tackle that ever-present resolution to stay fit and healthy. And this event is not just about the marathons! From hiking Echo Canyon, shopping at the Biltmore Fashion Park, or getting in a round of golf at the Arizona State University Karsten Golf Course, Phoenix and the surrounding area have lots to offer. OAR’s and SARRC’s participation in the Arizona Marathon and Half Marathon will include a booth at the two-day race expo, which will be held Friday, January 14, and Saturday, January 15, at the Phoenix Convention Center. In addition, OAR and SARRC will also have a team tent at the race start/finish area on Sunday, where the RUN FOR AUTISM team will celebrate with the finishers and spectators and friendly OAR and SARRC staff handing out post-race refreshments. For more information on the PF Chang’s Rock ‘n’ Roll Arizona Marathon and Half Marathon or other RUN FOR AUTISM opportunities, please go to OAR’s Web site at www.runforautism.org or e-mail run@researchautism.org with any questions.
Inspiration Beats Perspiration and Sends the Chicago Team to an Impressive Finish “Life is full of surprises,” José David Rivera told eager participants in this year’s Bank of America Chicago Marathon when speaking at OAR’s Runner Recognition Dinner. Indeed, surprises were par for the course on this particular October weekend. Rivera, who first ran for OAR at the Boston Marathon’s sister race in Iraq, spoke to his RUN FOR AUTISM teammates about the surprise of his son Joseph’s autism diagnosis. He described “the shock, the denial, and the guilt” that he and many parents like him experienced when they received a diagnosis. After struggling with the news, Rivera finally asked himself, “What can I do to make this precious child’s life better?”
His is just one story out of the 150 people on the team who found the inspiration to run the 2010 Chicago Marathon for OAR. Their inspiration led to an impressive fundraising total of more than $170,000. Many of the RUN FOR AUTISM team members stopped by the OAR booth at the Health and Fitness Expo to share their goals for the weekend. From first marathons, to impressive time goals, to even more impressive fundraising goals, it seemed everyone had come to Chicago with a challenge set for themselves. When 10-10-10, the Date to Motivate, finally rolled around, the RUN FOR AUTISM team members made their way to Charity Village before sunrise to stretch, fuel up, and mentally prepare. The final weather forecast called for high temperatures in the 80’s — 20 degrees above what runners initially expected. As the sun rose over Lake Michigan, the RUN team put on a brave face and set forth across Grant Park for the 7:30 a.m. start. By 11 a.m., the race’s hazard level had been raised to red to indicate “potentially dangerous conditions.” Paul Rocks describes the moment he felt the heat strike: “Reaching mile 16 or so, things changed. The heat caught up to me, and [my] strength was completely zapped. I was running just to finish…We [were] all hurting.” Then came the surprise. While battling the brutal conditions, the OAR runners began to find a new reason to run. “At this point I looked deep inside [to] gather some inner strength,” Rocks says.“I was surprised at what I saw. I saw family: my brother Mathew; my sweet sisters who are always taking care of someone; I saw my brother Mike, who’s the most selfless person on the planet. I saw all of you; I saw your effort to support me. I saw children [with] autism, their teachers who want to know how to support them. I saw their parents struggling to understand them.” Long-time OAR runner Dan Padilla found his reasons to run in two fellow RUN FOR AUTISM teammates he met on the course. After running with them most of the way, he later said, “I've come to realize that this must have been my calling for this marathon — to help these two finish. Because I really thought this was going to be my best time and finish.” The team’s camaraderie was just one of the race highlights for Padilla. His son Josh was another. “While walking back to the car and up the hill out of charity village, my son Josh (my reason for the run) helped me up the hill and then held my hand when stepping over the curbs and up stairs. This is something he has never done. [I was] still feeling depressed the next day [about my finish time] and somehow Josh must have sensed this, [because] he kept telling he will come see me next year and how much he liked downtown for the race. He kept reminding me of this most of the day.” With new friends, new memories, a few personal bests, and even some Boston qualifying times, the RUN FOR AUTISM wrapped up another successful Chicago Marathon.
2010 Marks a Banner Year for the RUN FOR AUTISM Marine Corps Marathon As the early morning sun began to rise over the nation’s capital on October 31, a bustle in the air suggested that this year’s Marine Corps Marathon and 10K would be a special one. Nervous excitement was tangible among the RUN FOR AUTISM’s runners as they shed clothing, applied Body Glide, and pinned on race bib numbers in OAR’s charity village tent. OAR’s executive director, Mike Maloney, quelled nervous energy by showing runners the sun rays’ angelic effect on the capital’s monuments through his “million dollar view” from the famous Netherlands Carillon.
With a brisk walk to the start line and a fire of the Marine Corps’ cannon, runners and walkers shed their nervousness and took off. For the nearly 150 members of the RUN FOR AUTISM team, it was time to put their hundreds of hours of training to work, running and walking a combined total of almost 4,000 miles over the Marathon courses. And the countless hours they put into fundraising was at work along with them. The team raised more than $100,000 for OAR’s research. For some, the marathon was a day to reflect on past marathon experiences and their reasons for joining the RUN FOR AUTISM team. Wilson Chua, for example, became part of the autism community 10 years ago after his three-year-old son was diagnosed with autism. After discovering OAR in 2006, Chua began running with the Marine Corps Marathon annually to raise money for OAR. To date, he has raised over $10,500 for autism research, $3,800 in 2009 alone. Diane Kellenburger, John Pyle, and Gary Maus not only ran a great Marine Corps Marathon, they were also pounding the pavement on 10/10/10 as part of the RUN team at the Bank of America Chicago Marathon. Veteran OAR runner, Pete Jewett, was having a different experience: his first marathon ever. Having completed five half marathons and numerous 5Ks, he stretched his marathon legs at the Marine Corps Marathon. He runs and fundraises for OAR for two grandchildren who have autism. Jewett says “Running was always the punishment for the sports I played…[s]uddenly I had my motivation…I was no longer doing this for me…The training suddenly took on new meaning.” Whether novice or experienced, OAR runners came together as an amazing inspiration to not only the running community, but to the autism community as well. As each runner filed into the charity village, he or she received an OAR medal, and greeted family and friends. And, as they realized what they had just done, smiles replaced exhaustion on their faces. RUN ProfileMaking It Personal
When Greg Miller started raising money for OAR this past year, he did not have a personal story to tell. He is not the father or uncle or brother of a person with autism. He doesn’t work with people with autism either. But he found a way to make it personal by setting up a tent for OAR’s TRI FOR AUTISM team members/donors at seven of his Virginia Triathlon Series races during the 2010 season. “I just thought having the OAR tent would give athletes and spectators a way to connect with something bigger than themselves,” he explains. And it didn’t hurt his goal of raising over $2,500 either. “Having the tent has provided a place for donors, friends, and family to enjoy some fellowship before, during, and after the race.” He shamelessly admits he didn’t want to miss any of the races while staffing the tent and was grateful that his 12-year-old daughter, Rachel, was willing to hand out OAR brochures, collect donations, and basically hold down the fort while “I was off having fun!” It Matters Besides the tent and his fundraising efforts, Miller encourages every athlete he meets to join TRI FOR AUTISM so they can help fundraise for OAR and he adds, “race for a cause!” His goals for fundraising were a modest $300 per triathlon but have added up to an impressive $2,500 since starting in February 2010. He’s taken on OAR as a cause because it matters to him to have one. “For several years, I raised money for the local Hampton Roads MS 150-mile bike ride. Unfortunately, it was just a one-day event. When I learned that VTS and OAR had partnered, it was a perfect opportunity for me to ‘race for a cause’ all season long.” Miller’s favorite advice for raising money is to “be shameless.” This past summer, a running friend named Kevin Peterson was organizing a three-man relay team for the 2010 Sandman Triathlon. Miller agreed to do the bike portion but asked that they name the team TRI FOR AUTISM so he could take advantage by raising money for OAR. “At the start of the race, things did not look so good because our swimmer, Jeff Rosenblatt, was forced to run a 1k in the sand due to rip tides. But our team persevered and took first place, setting a course record.” In addition to bragging rights, Miller raised $500, the most for a single race. “I don’t believe in coincidences,” says Miller. “The more I raise for charity, the better I seem to compete. 2010 was my best triathlon season ever!” Hooked on Challenge In the last six years, he’s done over 30 triathlons. A typical year includes four sprints, three Olympic and two Half Ironman distances and a marathon or two. Now 50, Miller credits his wife, Cindy, for letting him spend so much time fundraising, training, and racing. “Although she won’t let me to do my first full Ironman until 55 when our kids are out of the house and I don’t need a full-time job.” The challenge of juggling family, work, and training would be enough for most people, but Greg Miller has set the bar higher by encouraging us to find a cause that is bigger than ourselves. Research ReviewsBy Allison GilmourFocusing on OAR-funded Research As OAR announces the winners of the Applied Research Grant Competition this month, it seems appropriate to introduce members of the OAR community to past research by these individuals. In this article, we look at research by two sets of OAR-funded researchers. The first study, Effects of an Individual Work System on the Independent Functioning of Students with Autism, is authored by Kara Hume, Ph.D., and Sam Odom, Ph.D., both at the University of North Carolina. Their new research will expand this topic to using work systems with adults on the autism spectrum. The second study, Can One Hour per Week of Therapy Lead to Lasting Changes in Young Children with Autism?, is authored by OAR funding recipient Laurie Vismara, Ph.D., with Costanca Colombi, Ph.D., and Sally Rogers, Ph.D. Dr. Vismara’s new study will investigate the use of telemedicine.
Many individuals with autism need prompts to complete tasks whether at work, in school, or during play. Independent functioning is particularly difficult for people with autism as they are used to constant supervision and have difficulty with organization, generalization, and initiation. Increasing independence can lead to greater inclusion and success within the classroom and workplace. In this study, researchers investigate the effectiveness of individual work systems for increasing independent functioning. Individual work systems are part of the TEACCH strategy, which uses structured teaching. While other components of the TEACCH strategy have been studied and are considered best practices, individual work systems alone had not been previously examined. Individual work systems are put in place when the user has learned a skill but still needs prompts from supervisors. Work stations are organized with visual prompts. The system gives visual information about the task, the amount of work to be completed, what qualifies completion, and the next activity on the schedule. For example, a written list of work steps or a series of pictures attached to materials would be used to show the order of work. The goal of this strategy is to move individuals from working under supervision with prompting to completing tasks independently. Individual work systems play on the strengths of many individuals with autism, utilizing visual cues and structure. Researchers investigated the use of individual work systems with three individuals on the autism spectrum. Mark was 20 years old with severe autism and intellectual disabilities. Researchers observed him while working in a library scanning documents. Scott was 6 years old, nonverbal, with challenging behaviors and functioning below grade level. The final participant, Chris, was 7 years old with significant delays as well. Scott and Chris were observed while playing with toys. Researchers used an ABAB research design. In this design, data was collected first at baseline, then with training on an individual work system, next a return to baseline, a return to individual work system implementation without the training sessions, and finally a maintenance session one month later. Scorers observed the number of prompts participants received while completing a task, time on task, and amount of work completed. With Scott and Chris, scorers recorded the number of toys appropriately played with rather than work completed. Inter-observer agreement averaged 90 percent. For each study, participant on-task behavior increased and the number of staff prompts decreased dramatically. Task completion also increased. These positive effects were maintained one month later. Individual work systems are effective in increasing on-task behaviors and decreasing prompting. For the individuals in this study, these improvements related directly to goals on their IEPs to increase independence. The authors also suggest that decreasing prompting can improve functioning in an inclusion environment and improved on-task behavior could lead to great work and school success.
While all professionals recommend early intervention for children diagnosed with autism, there is often a delay between diagnosis and receiving interventions. This can cause added stress for parents while processing the diagnosis. Many parents feel helpless knowing they need to obtain services but not yet being able to. In this study, researchers investigated training parents one hour a week for 10 sessions to deliver services to their children, ages 0-2. Past studies have focused on interventions for children over the age of two. As diagnosis age decreases, more research-based interventions are needed for young infants. Other research on parent-directed interventions have shown an increase in verbal skills and appropriate behavior. This study focused on parent-directed interventions for younger infants. Parents were trained using a manual based on the Denver Model and Pivotal Response Training. This intervention was designed using research-based techniques to increase language skills and relationship development. Eight families were recruited to participate in this study. Children in the study were under 36 months old and diagnosed with autism. Parents participated for 12 weeks: two weeks of baseline and 10 weeks of training to implement the strategies. Parents were encouraged to use the strategies at home during usual daily activities. During the first two sessions, researchers gathered baseline data on targeted behaviors and asked parents to complete checklists and assessments. Targeted behaviors were “number of spontaneous functional verbal utterances” and “number of imitative behaviors.” During the following weeks, researchers videotaped play between the child and parent and child and therapist. These videos were used in data collection on target behaviors in 10-minute intervals. Parents were also assessed in competency of using the interventions. Researchers found that most parents implemented the strategies at or above criterion by the sixth session. During baseline, all child participants showed little to no imitative behaviors or spontaneous verbal utterances while playing with parents or therapist. After intervention, all children increased imitative behaviors and spontaneous verbal utterances. Children maintained high levels of targeted behaviors during follow up three months later. Researchers determined this increase in targeted behaviors was due to parent training rather than child interactions with therapists as behaviors increased as parents became more skilled at the strategies, therapists had high skill levels in implementing the strategies from the beginning of the intervention. This study suggests that short-term parent training programs, as little as one hour a week for 10 weeks, does lead to changes in young children with autism. This is an important finding suggesting that parents can be trained in strategies immediately following diagnosis and begin implementing interventions at home while waiting to receive services.
How To...By: Joanne Gerenser, Ph.D.Speechlessness Is Never Golden The Whys and Hows Behind Communications Systems
“The silence of speechlessness is never golden. We all need to communicate and to connect with each other. It is a basic need, a basic human right,” said Bob Williams (2000, in Dell, Newton, & Petroff, 2008, p. 88). This is as true for the estimated 20 to 30 percent of children with autism who may not develop functional speech (Tage-Flusberg, Paul, & Lord, 2005) as it is for those of us who can easily communicate. There is considerable evidence that an inability to communicate contributes to the development of challenging and problem behavior. The use of Augmentative-Alternative Communication (AAC) systems provides these children with viable options to help promote effective communication. Research supporting the use of AAC with children with autism dates back to the 1970s. AAC is best defined as any approach designed to support, enhance, or supplement the communication of individuals who are not independent verbal communicators in ALL situations.” (Nicolosi, Harryman, & Krescheck, 2005) AAC systems can range from aided systems, such as picture boards, Picture Exchange Communication Systems (PECS), and Speech Generated Devices, to unaided systems, such as the use of gestures, signs, or finger spelling. Despite 40 years of use, there are still many myths and unanswered questions regarding the use of AAC and individuals on the autism spectrum. This article will attempt to dispel some of these myths as well as address some of the questions. Will the use of AAC have a negative impact on my child’s speech development?
Which system works best for children with autism spectrum disorders (ASD)?
At what age should I consider AAC?
What’s new in AAC that may help my child?
What can I do (as a parent) to help my child be an effective communicator?
Conclusions These points are the most important to remember when dealing with AAC:
References: Dell, A., G. Newton, D., & Petroff, J. (2008). Assistive Technology in the Classroom: Enhancing the School Experience of Students with Disabilities. Columbus, Ohio: Merrill. Millar, D., Light, J., & Schlosser, R. (2006). The impact of augmentative and alternative communication intervention on speech production of individuals with developmental disabilities: A research review. Journal of Speech, Language, and Hearing Research, 49, 248-264. Nicolosi, L., Harryman, E., & Kresheck, J. (2005). Terminology of Communication Disorders (5th ed.). Baltimore: Williams & Wilkins. Nunes, D. (2008). Augmentative and alternative communication intervention for autism: A research summary. International Journal of Special Education, 23, 17-26. Schlosser, R. W., & Wendt, O. (2008). Effects of augmentative and alternative communication intervention on speech production in children with autism: A systematic review. American Journal of Speech-Language Pathology, 17, 212-230. Serrott, S. & Bowker, A. (2009). Autism, AAC, & Proloquo2Go. Perspectives on Augmentative and Alternative Communication, 18, 137-145. Sigafoos, J. & Drasgow, E. (2001). Conditional use of aided and unaided AAC: A review and clinical case demonstration. Focus on Autism and Other Developmental Disorders, 16, 152-161. Tager-Flusberg, H., Paul, R., & Lord, C.E. (2005). Language and communication in autism. In F. Volkmar, R. Paul, A. Klin & D. J. Cohen (Eds.) Handbook of autism and pervasive developmental disorder, Third Edition Volume 1 (pp. 335-364). New York: Wiley. Science, Fads, and Behavior Analysisby Thomas Zane, Ph.D., BCBA-DThe Importance of Skepticism Who Are You Going to Believe, Me or Your Own Eyes?
The ivory-billed woodpecker (Campephilus principalis) was last known to exist in 1944. Unexpectedly, in 2004, it was purportedly seen near Brinkley, Arkansas. This claim resulted in a scientific expedition that produced an inconclusive video that was used to confirm the bird’s reemergence from extinction, an article in Science magazine extolling the excitement that the bird was indeed back, and a worldwide fascination towards a species supposedly extinct but now here again. Yet, despite over five years of searching at a cost of over $10 million, there remains no physical proof that the woodpecker is in fact alive. (Radford, 2009) At a 2004 Florida conference about treatment for autism spectrum disorders (ASD), a medical doctor spoke to a group of parents about electromagnetic fields and their impact on autism. The doctor asked one parent if she used a cell phone, to which the parent replied yes. With a grand wave of the hand, the doctor pronounced, “Throw it out!” advocating for the unproven belief that the electrical energy emanating from cellular phones was somehow either responsible for or negatively impacting the symptoms of this neurological disorder. When confronted with claims that are presented as true, such as the doctor’s belief, how can we make a reasonable evaluation to ascertain, as confidently as possible, whether the claim has merit? This fundamental question impacts virtually all areas of our society. Claims abound – from alien abductions and the existence of the Loch Ness monster to eating wild boar meat to cure autism. How can we “separate the wheat from the chaff” in a way that both prevents the acceptance of wildly suspicious claims that have no support and permits adoption, with some level of certainty and comfort, of claims that are likely to in fact be true? The Scientific Method Skepticism is not a view that promotes the disbelief of every truth or claim. (Normand, 2008) Merriam-Webster Online (2010) defines it as “an attitude or doubt or a disposition to incredulity either in general or towards a particular object” (emphasis added). The word is from the Greek “skeptikos,” meaning “inquirer” or “investigator.” (DiCarlo, 2009) Pigliucci (2009) defines skepticism closer to the original Greek meaning as the suspension of judgment (either to adopt or reject) until sufficient evidence is examined. Kurtz (2010) stresses this perspective with his discussion of “skeptical inquiry,” an approach that promotes the examiner to “…seek, when feasible, adequate evidence and reasonable grounds for any claim to truth in any context.” (p. 21, as quoted in Normand, 2008) Claims of all kinds should be, before adoption or rejection, examined for the amount and quality of evidence that supports them. Thus, if there is a particular treatment for which there is valid scientific evidence for support, that treatment should be adopted and viewed as evidenced-based. However, when a claim is not supported by evidence or when the evidence is weak and of poor quality (such as solely relying on the opinion of the claim maker), rejecting the claim or position is wise. Simply put, skepticism is the position of objectively evaluating, by looking for empirical evidence, the validity of any claim of fact, and basing adoption or rejection on the evidence (or lack thereof; Normand, 2008). This skeptical attitude, and the corresponding investigatory approach, reduces the possibility of adopting as true a claim (or treatment) that may not be true. As is often said, extraordinary claims could be true, but a skeptical approach towards them would require extraordinary evidence and evaluation of that evidence. To reiterate, a skeptical thinker does not reject all claims; nor does s/he accept all claims as true. Rather, the position of a skeptical thinker is one of assessing the validity of the evidence before rendering a decision. The type of evidence is important, and there is an acknowledgement that there exists quite a bit of variation and debate regarding what evidence constitutes “valid” evidence (Zane & Hanson, 2008). But there is general agreement that the methods and criteria used by science is the most acceptable perspective to take. Adopting Skepticism 1. Study and adopt the methods of science, scientific investigation, and skepticism, as described by numerous textbooks that exist on these subjects. (e.g., Cooper, Heron, & Heward, 2007; Sagan, 1996) The scientific perspective and method of inquiry will inoculate against the reflexive acceptance of claims that are baseless. 2. Require that anyone making extraordinary claims provide extraordinary evidence to substantiate those claims. For example, when the practitioners of craniosacral therapy assert that they do not even need to touch the client’s body in order to change the course of the cerebral spinal fluid (Zane, 2005), they should be required to present evidence that this is in fact true. When leading proponents of Relationship Development Intervention, assert that, “The RDI Program is for every age group and for every range of severity, including those who are severely affected by autism” (Connection Center, 2005), they should be required to present the evidence that backs up this extraordinary claim. 3. Don’t be gullible – do not accept claims without evaluation. Accepting all claims is not only intellectually dishonest, but potentially dangerous and fatal. (Pigliucci, 2009) For example, promoting holistic remedies for curing AIDS will likely result in the unnecessary deaths of persons with the disease. Gullibly accepting the false claim that vaccines cause autism may lead to parents not vaccinating their children, and such an action puts children at risk for serious diseases. Furthermore, accepting claims without critical evaluation will result in significant costs in money, time, and emotion. (Zane, Davis, & Rosswurm, 2009) Gullibility is the opposite of skepticism, so demanding evidence of truth will naturally protect one from being gullibly accepting every claim. 4. Behave according to this rule: “In science, keeping an open mind is a virtue -- just not so open that your brains fall out.” (James Oberg; Sagan, 1996) In other words, be intellectually willing to accept any claim, but always seek evidence and proof of truth before acceptance is granted. 5. Find contexts that promote skepticism. For example, attending meetings of other skeptics and listening to podcasts such as The Skeptics Guide to the Universe will prompt and reinforce skeptical behavior. (Loxton, 2009) Consider following some of the suggestions in What Do I Do Next, a call for action on the part of all skeptics. (Loxton, 2009) Antiscience, pseudoscience, and bizarre claims continue to gain influence in the public, and this state of affairs is partly due to the lack of understanding of the nature of science. (Lamal, 2009) Skepticism is a key concept in understanding how to assess the level of believability of something. Pigliucci (2009) goes so far as to believe that there is an ethical requirement to be skeptical and question the veracity of claims. He asserts that everyone must seek the truth and this requires a “baloney detection toolkit.” (Sagan, 1996) This set of analytic and decision-making procedures and rules allow us to, as best as we are able, ascertain what might be true and what does not have evidence of believability. The adoption of healthy skepticism will result in a more informed public, more informed decision making about claims and treatments, and have the overall effect of the promotion of truth and validity to protect us from extraordinary claims that have little reason to be believed. References: American Association for the Advancement of Science (2009). Retrieved August 20, 2010 at http:/people-press.org/report/528/. Connections Center (2005 August). Myths & facts about the RDI® program, part 5,fact: The RDI program is for those severely affected by autism, too! Going to the heart of autism. Retrieved from www.rdiconnect.com/archive/newsletters/0816005/default.htm#article. Cooper, J.O., Heron, T.E., and Heward, W.L. (2007). Applied Behavior Analysis – 2nd ed. Englewood Cliffs, NJ: Prentice-Hall. DiCarlo, C. (2009). The roots of skepticism: Why ancient ideas still apply today. Skeptical Inquirer, 33(3), 51-55. Grothe, D.J. (2009). Skepticism 2.0. Skeptical Inquirer, 33(6), 51-52. Kurtz, P. (2010). Exuberant Skepticism. J. R. Shook (Ed.), Prometheus Books, Amherst, New York. Lamal, P. (2009). Paul Kurtz: A titan of skepticism. Skeptical Inquirer, 34(4), 57-58. Loxton, D. (Ed.) (2009). What do I do next: Leading skeptics discuss 105 practical ways to promote science and advance skepticism. Retrieved August 20, 2010 at www.skeptic.com/downloads/WhatDoIDoNext.pdf Merriam-Webster Online (2010). Retrieved August 16, 2010 at www.merriam-webster.com/dictionary/skepticism. Normand, M. P. (2008). Science, skepticism, and applied behavior analysis. Behavior Analysis in Practice, 1(2), 42-49. Pigliucci, M. (2009). The moral duty of a skeptic. Skeptical Inquirer, 33(6), 18-19. Radford, B. (2009). Chasing the ghost bird: Science, skepticism, and the ivory-billed woodpecker. Skeptical Inquirer, (34)3, 32-34. Zane, T. (2005). Fads in special education. In Jacobson, J. W., Foxx, R. M., & Mulick, J. A. (Eds.), Controversial Therapies for Developmental Disabilities: Fad, Fashion, and Science in Professional Practice. Mahwah, NJ: Lawrence Erlbaum Associates. Zane, T., Davis, C., & Rosswurm, M. (2009). The cost of fad treatments in autism. Journal of Early and Intensive Behavior Intervention, 5(2), 44-51. Zane, T. & Hanson, J. (2008). Evidenced Based Practice: A Review of the Criteria that Constitutes Evidence. Presented at the Florida Association for Behavior Analysis conference, Daytona Beach. |
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On January 16, thousands of runners and walkers will kick off their 2011 race calendar when they hit the pavement for the PF Chang’s Rock ‘n’ Roll Arizona Marathon and Half Marathon. And a team full of those runners and walkers will complete their courses with the support of OAR and the Southwest Autism Research & Resource Center (SARRC) volunteers and staff. 
Joanne Gerenser, Ph.D., is the executive director of the Eden II Programs, located in Staten Island, N.Y. and a long-term member of OAR’s Scientific Council. She is also an adjunct assistant professor at Brooklyn College as well as Penn State University. She co-authored the interactive CD-ROM, “Behavioral Programming for Children with Autism, and has written several book chapters and articles on autism and developmental disabilities. She serves on several boards, including professional advisory boards for programs serving children and adults with autism. Dr. Gerenser has received numerous awards for her work, including the Mosaic Foundation’s Educator of Excellence Award, the Elija Chariot Award, and the Lou Miller Business Leadership Award.
Dr. Thomas Zane is a professor of education and director of the Applied Behavior Analysis Online Program at the Van Loan Graduate School of Endicott College. He is a licensed psychologist in New York and Massachusetts. Dr. Zane has published in various journals and books, presented at regional, national, and international conferences, and been an invited lecturer in Ireland and the Republic of China. His research interests include teacher training, staff development, and evidenced-based practice in autism. As part of his duties at Endicott College, he offers a BCBA certificate program through distance learning. 