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May 2011 |
Message: ForgivenessBy Dana Commandatore
“Mama, Mama, Mama…” is how my son starts every sentence directed to me. He doesn’t seem to realize that he does not have to preface everything he says by calling my name. But I know how hard he has to work to find those words so I don’t mind, I’m just thankful that I get to be his mom. When I was 20 weeks pregnant, I had an ultrasound that revealed a possible problem with my pregnancy. I immediately scheduled an amniocentesis because I was confident that I wouldn’t be able to handle a baby with any problems. Relieved that the test results were normal, I was on my way towards having a healthy baby. Then, at 32 weeks, I was hospitalized for complications. One month later, I delivered Michelangelo via an emergency C-section. From the beginning, my husband, Michael, and I knew Michelangelo was different. When he was about three months old, we had some concerns that he was either deaf or blind since he never followed our gaze or voice. After a few of our own assessments, we determined his sight and hearing were just fine. Different—And Happy In June of 2004, we decided to move from our tiny New York City apartment to a tiny house on the west side of Los Angeles where we could afford for me to stay home with him for a few years. At almost two years old, Michelangelo still had no speech and his differences were becoming more obvious. I followed my intuition and had him tested. A few months after his second birthday, he was diagnosed with autism. The irony is that my son was diagnosed with something that could not be tested for…well, not yet. I hear that we are close to developing a pre-natal test that could determine one’s chance of having an autistic child. The problem is that society is so afraid of autism that many women might decide to terminate children who may have autism without ever really knowing what it means to parent one. Letting Life Happen The reality is that we don’t spend our weekends at other kids’ birthday parties because we are never invited. We can’t go to movie theaters or sporting events. My husband doesn’t coach a Little League team and I’ve never picked our son up from a play date. Instead, we spend our weekends at the aquarium and let Michelangelo choose what he wants to do on his birthday. We develop a bond by watching the same movies over and over again and we are fine with giving up our L.A. Galaxy season tickets. Michelangelo doesn’t really have friends but he likes to watch his dogs play in the backyard while he stims (short for self-stimulatory behavior) on his swing. We’ve changed our plans and let life happen. We have no idea if he will play sports in high school or if he will be able to hold a fulltime job so I try not to waste energy worrying about things I can’t control. Instead, I fight for his rightful place in school and try to educate people about his differences. I want him to develop the skills to advocate for himself when he feels threatened and the confidence to live his life the way that makes him happy. We push him when necessary and cut him a break when he needs one. Michael and I try to visit his world when he lets us for we know how hard he has to work to live in ours. I almost gave up on motherhood because I was searching for perfection. I’m just grateful that my son taught me how to become enough of a mother that I was able to forgive myself for doubting my ability to handle something so unexpected and so beautiful. PerspectivesBuilding the Knowledge Base: Reflections from the OAR “Family”
Patricia Wright, PhD, has dedicated her career to ensuring that individuals with autism are fully included in society. As national director of autism services at Easter Seals, Wright leads autism programs at one of the nation’s largest providers of services for individuals with autism across the life span. Dr. Wright sees OAR’s mission as critical. “The field of autism service delivery needs applied research to ensure that every individual with autism has access to quality interventions that result in meaningful outcomes. The work of OAR is building the knowledge base for what interventions indeed produce quality results.” She sees OAR’s commitment to applied research as unique, resulting in “immediate, quality outcomes for the individuals participating in the research as well as provides knowledge to the field of autism as a whole.” She joined OAR’s Scientific Council about a year ago, because, she says, “The work that OAR does is so important to the field of autism. Participating as a member of the Council is a privilege. The commitment that OAR has made to provide knowledge and awareness of effective interventions of those living with autism today is significant.” ProfileBehavioral Directions, LLC Offers Evidence-based Hope
“Although the awareness of the need for evidence-based practice has increased since I founded Behavioral Directions in 2001,” observes Dr. Barbin, who is the founder and executive director, “we still see families at intake who tell us about an intervention or treatment that doesn’t have good data but was publicized in mainstream media.” She understands why parents and caretakers may want to take advantage of anything that offers hope for their children, but she shakes her head as she says, “Autism treatment is definitely an arena in which ‘consumer, beware!’ applies.” That’s why her practice offers not only services to families, educators, and others but is also committed to providing training. Behavioral Directions recently partnered with OAR to sponsor the first in a series of timely educational seminars, Maximizing Success: Outcome-Based IEP Goals. Evidence and Ethics Behavioral Directions was founded on two very simple core principles, Dr. Barbin says:
Taking It Home Dr. Barbin and the two other behavior analysts in the practice use a consultative approach when working with their clients. “In addition to children and adults with autism spectrum disorders, we also work with people with related disorders, such as ADHD, Down syndrome, developmental delays, feeding disorders, and behavioral issues, such as tantrums or self-injury.” Working Toward Change “We walk them through the manual first, then do role playing without the individual with autism present. Then we bring in that person so the caretaker and person with autism can go through the interventions. We model the method and then watch while the caretaker does it and give immediate feedback.” The intensive training process then continues for several additional sessions and is always ongoing. The goal, she notes, is behavior change and acquisition so she and her colleagues are committed to the process. Given the proper support, oversight, and training, parents, caretakers, educators, and others can implement behavior analytic interventions that work. That’s what she and her colleagues bring to the families, schools, and individuals they work with: an evidence-based method to effect behavioral change. Because the work is intensive, Behavioral Directions keeps small caseloads, about 100 individuals, families, and educational teams per year. “We want to be responsive and timely to our clients.” An intern and office manager support the three behavior analysts. “We are proud of our partnership with OAR as we both celebrate 10-year anniversaries,” Dr. Barbin explains. It’s a perfect pairing, given both organizations’ emphasis on evidence-based practice and the need to educate those who work with and care for people with autism. Special FeatureBy Stanley JaskiewiczDad, I’m Going In!
My son, Peter, earned his Second Class rank at Boy Scout summer camp last summer and three merit badges along with it. But that was not his greatest achievement, in my opinion. Peter has Asperger Syndrome, and has always faced challenges in handling new situations and adversity. His scouting experience has helped him – and us – more than we could have hoped, both in socialization and adjusting to change, as well as giving him tremendous pride in his accomplishments. So when he did not pass the swimming test on the first day of camp – even though he is a very strong swimmer -I thought it would be a very long week. He had planned to work on another aquatics badge, which he now could not do. Fortunately, I was able to remind him of the calming techniques he has learned in a private conversation. He had not been in the water since the previous summer, and was in fact having a difficult swim after the long layoff. (Although I am not a formal leader, I accompanied the troop to camp as a “registered adult.” I had volunteered as a “leader” so that my presence would be “typical,” but my main role is helping Peter manage not only his scheduling, but also his anxieties and emotions.) After he calmed, I persuaded him to attend the instructional swim sessions in the afternoon – and he passed the test the first time he tried again. He also agreed to select another badge to work on, to make the most of his camp week (and the replacement badge, Nature, was the first one he finished). Staying in the Pool By the end of the week, he had cooked his own lunch to finish his Second Class rank requirement, and completed his Computers and Photography badges. I was also proud that he had become comfortable just hanging out with"the guys" around the campfire, perhaps the most difficult task he faced. (“Dad, you can go back to your tent now!”) So I thought the swimming hole was worth another try. Since Fossil Rock was located at the end of a steep hike of over a mile through the woods, I suggested that we at least go there when the boys next went, just to see what it was like – he and I had loved hiking together long before he joined Cub Scouts. At the suggestion of another adult, we went immediately after his swim class, so that he had his swim trunks and goggles with him. Better than the Birthday As we approached Fossil Rock through the woods, we could hear the typical laughing and shouting of boys at play for at least 10 minutes, but could not see anything through the thick growth. The noise, and our anticipation, built as we descended further and further into the woods. We suddenly emerged into the brilliant sunshine of the clearing at the swimming hole, and were overwhelmed by the noise and exuberance of teens at the end of a week on their own. Peter immediately turned to me, and said the words I will always remember, “Dad! I’m going in!” And that is what he did (after changing back into his suit behind a tree). He was so excited that he even forgot to take off his watch. It became waterlogged – a big deal for a boy who perseverates on time. I gave him my watch for the last days of camp, and called my wife, who was able to get another at Wal-Mart before we got back to camp. I immediately told Peter, so the rest of his week wasn’t ruined worrying about the time. The $5 replacement cost was well worth seeing the joy and excitement in my son’s face, and the pride I felt in Peter's growth, when, for a few moments, at least, the boy in him “washed out” the autism. Copyright Stanley P. Jaskiewicz 2011 OAR NewsJoin OAR for the Milestones Conference
Each speaker has a direct tie to OAR. One is a member of OAR’s Scientific Council. As mentioned, two are previously funded researchers. The last is a nationally recognized autism professional who has presented multiple times at OAR conferences and served as a research reviewer for OAR. The two researchers will focus on their research as it relates to school issues. Rick Kubina, PhD, BCBA-D, will discuss behavioral fluency in “Behavioral Fluency in the Classroom and Beyond,” and Carolyn Hughes, PhD, will address social interaction in high school-aged students in “Social Interaction Program for High School Students with ASD.” Read about Dr. Kubina’s study and Dr. Hughes’ study on OAR’s Web site. Anne Holmes, MS, CCC, BCBA, chief clinical officer for Eden Autism Services, will shift the discussion to quality of life for adults on the spectrum in “Ensuring Quality of Life Post 21: Effective Non-Academic Programming for Older Students,” and Scientific Council member, Luke Tsai, MD, will speak on co-existing psychological conditions in “Diagnosis & Treatment of Co-Existing Neuropsychiatric Disorders.” Each presentation will offer BCBA CEUs to participants. The OAR track is not the only reason to attend! It is a great conference on its own merits. It will open with keynote speaker Michelle Garcia Winner, author and developer of Social Thinking, discussing perspective taking in the home, and at school and work. After that, 29 sessions offer attendees a range in topics that cover the spectrum of autism and the lifespan. Learn more and register for the conference.
The first phase of OAR’s 2011 Applied Research Competition came to a close on April 1 with the submission of 69 research pre-proposals from researchers across the United States as well as from Canada, Australia, and Portugal. After an internal review to ensure that each application met the criteria put forth in the Request for Proposals, OAR introduced its corps of 50 reviewers to the new online review system. As part of the initial review process, three doctoral-level reviewers, including at least one member of the Scientific Council, review each pre-proposal. Once those are completed, OAR records the scores and reviewer comments to support the screening process, and later to be shared as constructive feedback for the principal investigators. Typically, 30 to 40 pre-proposals rate highly enough to invite a full proposal, which is the next phase of the competition. OAR will issue invitations for full proposals by June 1. In this stage, three different reviewers will review the proposals, but this time two will be members of the Scientific Council. The third and final round of review is an in-person session involving all members of the Scientific Council. “It’s a very competitive process at this point,” notes Dr. Peter Gerhardt, chairman of OAR’s Scientific Council. “We make our decisions most often according to degrees of excellence rather than good research versus bad research.” OAR’s Scientific Council will meet for the final review on October 13; OAR’s Board of Directors will receive and consider the recommendations and approve the final grant awards the next day. OAR will announce and notify the winners in November, and begin funding the new studies on or after January 1, 2012. More information on the Applied Research competition is available on OAR’s Web site.
On April 26, OAR teamed up with Behavioral Directions, LLC to offer the first seminar, on Individualized Education Programs (IEPs), in its new Maximizing Success series. Maximizing Success: Outcome Based IEP Goals, was a great success according to all accounts. More than 20 parents and professionals from Virginia, Maryland, and the District of Columbia attended the two-hour seminar held at George Mason University’s Psychological Services Center in Fairfax, Va., to hear Behavioral Directions Founder and Executive Director Jane Barbin, PhD, BCBA-D, discuss strategies and methods for writing effective IEPs. A Herndon, Va.-based autism consulting firm, Behavioral Directions provides autism assessment and intervention services in home, school and community settings throughout the Washington metropolitan area. (Read a profile of Behavioral Directions in this issue of The OARacle.) During the seminar, Dr. Barbin mixed instruction with questions and practical application, walking the attendees through the IEP process and the key variables in preparing for these meetings. Showing participants examples of some ineffective goals, she demonstrated how to make the goals observable, measurable, and, most importantly, useful for the student and teacher alike. In a survey completed following the class, all respondents rated the seminar favorably and indicated that they plan to attend future Maximizing Success events. “I feel more comfortable offering suggestions about goals at IEP meetings,” stated one participant. OAR is grateful to Dr. Barbin and the staff of Behavioral Directions, LLC for donating their time to make this seminar a high-quality, affordable event. Stay tuned for information about Maximizing Success: Behavioral Strategies for Task Independence, which will take place in the fall.
On April 29, OAR’s 2011 Schwallie Family Scholarship program application period came to a close with 370 college-bound students submitting applications. These students are vying for 18 one-year, $3,000 scholarships. To be eligible, the applicant must have a diagnosis on the autism spectrum and be accepted as a full-time student at either a two- or four-year college or a vocational/trade/technical school in the United States. Begun with only three awards in its inaugural competition in 2007, the program has managed to increase available funding each year and awarded a total of 33 scholarships totaling $112,500. That total included extra funding for the three first-year recipients who received additional funding, thanks to Brian and Trish Kelly. Last year, OAR was able to grant 18 awards thanks to generous donations from individuals across the country. This year, OAR again plans to award 18 scholarships to deserving students. “Each year, the sheer number of applications reconfirms the need for this program,” says Alyssa Kruszyna, director of business operations and communications. “It’s wonderful that more and more students with autism are succeeding personally and academically, proving that they are an asset to the community.” Since the application period closed, OAR’s staff has inspected the applications for completeness and eligibility. Now, members of the review committee, which includes several members of OAR’s board of directors and a member of the Schwallie family, will assess the applications. Once the candidates are narrowed down, members of the committee will contact references, then meet by teleconference to make the final selections. The last step is review and approval by OAR’s board. OAR will complete the process by June 30, and award the first scholarship funds in August. For more information on this program, visit the Schwallie Family Scholarship Program page on OAR’s Web site. News from the Autism CommunityIACC Meeting Reports on Trends and Research in Autism Treatment and Services The Interagency Autism Coordinating Committee (IACC) convened on April 11 for a full committee meeting in Washington, D.C. Created in its current form by the Combating Autism Act of 2006, the group consists of representatives from all the government organizations with a stake in autism research, education, and services with public participation by community members selected from the autism community. The purpose of the group is advisory with the goal of making recommendations regarding autism to the U.S. government. Some highlights of this meeting included a presentation on the “State of the States for People with ASD,” the launch of the AutismNOW Web portal, current research at National Institute of Health (NIH) Autism Centers of Excellence, and the web resource JobTIPS from do2learn. State of the States Another disturbing trend was the lack of staff available for programs, a problem that is growing with state budget constraints. States are also focusing more on self-directed services where individuals and families receive vouchers to put towards services they deem necessary. More positive results were also reported, including many states using successful, evidence-based programs that can be used as models for other states. AutismNOW Web Portal NIH Autism Centers of Excellence Research One innovative behavior intervention mentioned during the presentation was a study by OAR-funded researcher, Laurie Vismara, PhD, looking at the use of distance technology to train parents to deliver interventions. JobTIPS Web Site You can access materials from the meeting and get information about attending the full committee meeting on Tuesday, July 19, on IACC’s Web site. How-ToBy Ann EllisonWhat to Look for When Choosing a Camp for a Child with Autism
The idea of summer camp brings visions of roasted marshmallows and friendships forged around a campfire. In recent years, the options for summer programs have expanded beyond the traditional and parents, including parents of children with autism, now have a variety of choices to consider. While social development is one of the principal benefits of summer camp programs for all children, it is particularly important for those with autism. At the same time that camp can provide unique and valuable opportunities for building social skills, it can also present special challenges. Finding the right camp requires matching your child’s needs to a program that can provide the appropriate level of support for social development along with fun and sun. Difficulty in social interaction is one of the primary features of autism regardless of cognitive level. Children with autism do not learn or use social skills with the same ease and flexibility as typically developing children. Behavior issues and communication deficits may compound social problems. During the school year, intervention is generally concentrated on academic skills. Even if supplemental social skill intervention is provided, it is usually not a primary goal. Summer camp experiences can provide a unique opportunity to develop social skills in a fun, more relaxed environment. Whether it is the focus of the program, or is an extra benefit related to a special interest, summer camp is a perfect opportunity to develop social skills and grow in independence. Do the Homework The choices can seem either overwhelming or sorely lacking, depending on your needs. There are sleep-away camps, day camps, special interest camps, and therapeutic camps focused directly on social skill development. Some are located far from home, and some, if you are lucky, might be right in the neighborhood. Some are highly structured while others are self-directed. Most camps have some variation of social development, personal growth, and independence as goals. Knowing what level of support your child requires to reach these goals is the key to finding the right fit. It is essential to know your child’s strengths and needs before you start looking. When researching programs, you should ask about: Camp philosophy: The difference between programs is largely the level of support and direction. Therapeutic camps generally have more direct instruction and a supportive curriculum while recreational camps usually focus on simply enjoying activities and friendship. From a therapeutic standpoint, consider that evidence-based interventions such as Applied Behavior Analysis, peer training, and social skills groups have the most research support as effective strategies for social skill development in children with autism. It may be helpful to begin by asking the camp director about his or her philosophy and experience. Staff experience and support: Many children with autism will require a high degree of support to engage in activities and benefit from a camp experience. The ratio of staff to campers is a good measure of the level support available to your child. However, simply having a high number of adults in the area is not sufficient. The experience and training of staff is an essential issue. What is the education and experience level of the staff? Have they worked with children with autism in the past? What autism-specific training do they receive? Meeting special needs: Children with autism have a variety of special needs, and it is important to know that the camp is prepared to meet these needs in a safe and effective way. Issues such as wandering or elopement require a high level of supervision. Water safety can be a concern for unpredictable children. Concerns such as behavioral problems, anxiety, social deficits, special interests, repetitive behavior, and special diets require a clear plan of how these issues will be addressed and by whom. Inclusion: Summer camp can provide a wonderful opportunity for inclusion but proper planning is essential for a successful inclusion experience. Unfortunately, isolation and bullying are common experiences for children with autism when they are placed in inclusive environments without the proper supports. Summer camp should be a positive experience, which strengthens social connections, not an experience of social rejection. Children with autism do best when social demands are presented in manageable pieces. Success breeds success. Peer supervision and support help to create a positive experience for all. Many programs have had success with peer training. Does the camp have proactive strategies in place to support positive social interactions between children with autism and typically developing peers? How much supervision is in place during unstructured or recreational time? It would be worthwhile to discuss inclusion and peer training in depth with a camp director prior to making your choice. The goal of summer camp is a successful social experience. It is an opportunity to develop skills, friendships, and independence while having a great deal of fun. Families can help to generalize skills learned in a summer camp environment by staying involved, knowing the interventions that work, and creating opportunities to practice new skills throughout the year. Finding the right program requires knowing the needs of your child and the strengths of the program. With the right match, your child can have a fabulous summer and build memories that will last a lifetime. Applying ResearchTeaching Children with Autism How to Respond to the Lures of Strangers Teaching any child safety skills is essential; but it is especially important for those with disabilities. Unfortunately, people and children with disabilities are more vulnerable to abuse. While studies exist that examine safety skill interventions for individuals with intellectual disabilities, few studies address the use of these interventions with children who have autism. In a recent study, Teaching Children with Autism How to Respond to the Lures of Strangers, at Anadolu University in Eskisehir, Turkey, researchers Nurgul Akmanoglu and Elif Tekin-Iftar examined the use of videomodeling, graduated guidance, and community-based instruction to teach four children with autism how to respond to strangers who try to lure them away. Akmanoglu and Tekin-Iftar used teaching techniques proven effective with children who have autism spectrum disorders (ASD) and used a three-step sequence to teach this safety skill. 1. The children were shown videos of typically developing peers modeling a response to approach and lures of a stranger. The response consisted of saying “no” and walking at least five steps away from the stranger. 2. Students practiced these skills with graduated guidance from their teacher both in the clinical setting and in the community. Graduated guidance consists of prompting moving from most invasive (physical prompts) to verbal prompts and visual prompts. Students practiced the skills until they could complete the sequence with 100 percent accuracy independently. 3. Each day the students were put in a situation where they were tested. A stranger would approach the child and the child would respond with the sequence learned from the video model. Each child in this study began the intervention with zero correct responses to an approach from a stranger. After participating in the intervention, all participants responded by saying “no” and walking away from strangers. This technique generalized to new settings and the children maintained this skill after the study, and instruction, ceased. This is a simple method to teach stranger safety skills to children with autism that parents and teachers can use. One challenge could be finding unfamiliar adults to act as strangers when practicing the skills. Also, while some of the participants had intellectual deficits as well as autism, they all had the prerequisite skills of waiting, distinguishing different people, imitating verbal behavior, maintaining a task for five minutes, walking independently, and following simple directions. This intervention may not work for children with more significant adaptive skill deficits. Researchers noted that each participant needed a different number of training sessions and sessions with prompting to learn the intervention. This could make it difficult to use this strategy to teach safety skills in a group setting. More research needs to be completed on safety skills and children with autism but this study does present some ideas that can be used by teachers and parents. Reference Akmanoglu, Nurgul and Elif Tekin-Iftar. (2011). Teaching children with autism how to respond to the lures of strangers. Autism. 15(2) 205-222. Research 2011A Closer Look at 2010 OAR-Funded Research Study: Identifying Socially Based Reinforcers for Young Children with ASD Researcher: Anibal Gutierrez, PhD, BCBA-D Purpose: Why Is This Study Needed? Joint attention refers to the capacity to coordinate attention between objects and people in order to share experiences with others (e.g., pointing, showing, gaze shifting). From a function-based, behavioral perspective, the development of social skills and joint attention may require the use of social reinforcement. In other words, in order for a child to share experiences with another person (joint attend), their behavior must be motivated by a social consequence. Teaching similar topographies of behavior for non-social reinforcement (e.g., pointing to request a toy) does not represent a true instance of joint attention. Joint attention skills are an important hallmark of early development; have been found to predict play, language and cognitive abilities; and have recently become a target of intervention research and clinical practice. Unfortunately, there has been little empirical emphasis to date, identifying procedures to systematically identify social reinforcers. Based on pilot data collected at the University of Miami, it appears that children with ASD show a range of sensitivity and preference for social contingencies. Results from this study will have important practical relevance for clinicians working with individuals with ASD. Clinicians are often faced with the problem of designing and implementing skill development programs that will be effective at teaching the required skill as well as result in optimal maintenance and generalization. Often, clinicians rely on the use of contrived reinforcers in an effort to use powerful forms of reinforcement that will produce the desired treatment effect. A limitation of these forms of reinforcement, particularly in the area of social skills and joint attention intervention, is limited maintenance and generalization as well as a lack of validity. Teaching these skills using tangible or non-social forms of reinforcement may lead to the development of a skill that is topographically similar but functionally different than the targeted skill. This distinction, albeit a subtle one, is important for the development of these important skills. Study Methodology In Brief 1. A single operant reinforcer assessment presents participants with the opportunity to respond with a behavior to gain access to social consequences. This assessment is used to determine which social consequences would be used as reinforcers during a joint attention intervention. 2. A concurrent choice reinforcer assessment is currently being piloted as an alternative, potentially more sensitive procedure, than the single operant procedure. This assessment consists of presenting participants with the opportunity to engage in one of two concurrently available simple operant responses. In this assessment, one of the two responses is associated with delivery of a social consequence, while the other has no consequences provided. 3. A paired-stimulus preference assessment, using edible/leisure items and activities, which in this case, may be useful in yielding a rank order of preference for social consequences and ultimately a single, highly preferred social consequence. During this assessment, participants are presented with the opportunity to choose between two social consequences. With repeated presentations, each social consequence will be paired once with every other consequence. 4. An eye-tracker assessment is the most novel assessment. It will be developed to determine the extent to which visual tracking of stimuli representing social interactions will be useful in the identification of reinforcers. The researchers aim to pilot this procedure, which will use a series of visual stimuli representing social reinforcers previously identified through the reinforcer assessments. The eye-tracker assessment will allow researchers to evaluate the extent to which behavioral gaze patterns are associated with previously identified social reinforcers. Presumably, behavioral gaze patters may be a reliable method to assess preference for social reinforcers that does not require any pre-requisite skills (e.g., instructional control, picture card discrimination skills) from the participant and that may be a reliable and efficient assessment procedure. Data from this study will significantly contribute to the literature regarding preference and reinforcer assessment designed specifically to identify social reinforcers. In addition, Dr. Gutierrez believes these data will enhance understanding of the role that social motivation may play in ASD and related skill deficits. Finally, resulting data may also shed light on how individual differences impact preference and sensitivity for social consequences. It is possible that this characteristic (preference for social consequences) may be correlated to symptom severity, symptom presentation, and perhaps shed light on characteristics that may predict treatment responsiveness for individuals with ASD. Researcher Anibal Gutierrez, Ph.D., BCBA, is the coordinator of behavioral services, at the University of Miami-Nova Southeastern University Center for Autism and Related Disabilities. He has over 10 years of experience working with individuals diagnosed with autism and other developmental disabilities as well as individuals with dual diagnoses. He has conducted assessment and treatment of severe problem behavior, conducted and supervised discrete trial and verbal behavior programs, and designed and implemented behavior acquisition programs. He has presented nationally on the assessment and treatment of problem behavior and on the acquisition of communicative behavior. Dr. Gutierrez is also an Adjunct Professor for the Center for Psychological Studies at Nova Southeastern University.News from the RUN FOR AUTISMDon’t Miss the Pinnacle of Marathon Events
Runners who receive race entry through the RUN FOR AUTISM commit to raising a minimum of $950 by November 30. Entries are limited and there is not much time to reserve a spot between now and the June 30 deadline. Runners who purchased entry to the race before it sold out in March have the option of joining the team with a fundraising commitment of only $250. When you sign up for the RUN FOR AUTISM-Chicago team, you will join an amazing group of runners who are also training and fundraising to support autism research. OAR’s RUN FOR AUTISM staff will keep you up to date via weekly team e-mails starting in May and continuing through October. These updates will include training and fundraising tips, pertinent announcements, and success stories and profiles about your fellow runners. One of the high points for Chicago runners is the annual Runners’ Recognition Dinner, which takes place at Harry Caray’s downtown on Saturday evening before the race. The dinner is complimentary for RUN FOR AUTISM runners. Friends and family members are also welcome to partake in the Saturday evening festivities and can purchase tickets to the event closer to race weekend. Another great perk for charity runners and their supporters is access to the Charity Village. Chicago’s is second to none. It offers the convenience of ready access to the starting line combined with the outstanding support and hospitality of OAR’s RUN FOR AUTISM staff. OAR’s RUN FOR AUTISM charity village tent will serve as a comfortable home base for you and a great post-race rendezvous point for family and friends on race day. For team members who are running their first marathon or for marathon veterans who are looking to get in marathon-shape or improve their time, OAR has once again partnered with the Chicago Area Runners Association (CARA) to provide team members with complimentary marathon training through CARA’s Marathon Training Program. Don’t delay and miss the June 30 deadline. Sign up now by contacting the RUN FOR AUTISM staff at run@researchautism.org.
Join OAR on October 30 for this patriotic run through Washington, D.C., and Northern Virginia and help raise money for autism research. The Marine Corps Marathon 10K takes runners from the National Mall across the Rochambeau Memorial Bridge into Virginia, then along the Potomac River past the Pentagon and Arlington Cemetery. The final challenging incline leads up to an inspiring finish in front of the world famous Marine Corps War Memorial and a finishers' chute lined with uniformed Marines. Challenge your friends, family, and coworkers to get off the sidelines and in on the action! OAR’s 10K runners will receive the new race singlet, fundraising support from the RUN FOR AUTISM staff, a complimentary invitation to the Runners’ Recognition Dinner the night before the race, race day support and festivities at OAR’s tent in the Charity Village, and finally and most important, the unique OAR Finisher’s Medal. Register today at www.marinemarathon.com, then join the OAR team at www.firstgiving.com/OAR/event/MCM10K. RUN FOR AUTISM team members participating in the Marine Corps Marathon 10K have a $250 fundraising minimum. Contact Chelsea Steed at run@researchautism.org for more information.
This year, OAR is excited to announce that for the first time in its history, the RUN FOR AUTISM is an official charity partner of this prestigious race. After several years as an official partner of the NYC Half Marathon, OAR was honored to be selected as a Community Charity for the 2011 Marathon. As a Community Chair, OAR was allocated five entries into this year’s race. Receiving OAR’s first charity entries and representing the RUN FOR AUTISM team are five outstanding RUN FOR AUTISM veterans: Jeff Rayburn, Gary Maus, Craig Hooker, Jose Rivera, and Tom Schirmer. These top fundraisers and loyal OAR supporters, along with a number of runners who sign up with the RUN FOR AUTISM team after receiving entry through the lottery, will tackle 26.2 miles of “rolling hills,” spirited spectators, and much, much more. “There truly isn’t any better race to wrap up the 2011 RUN FOR AUTISM race schedule,” declares RUN FOR AUTISM Director Lily Matusiak. Are you one of the lucky few who received entry to the race through the lottery? We’d love to have you run the race as part of the RUN FOR AUTISM team! Sign up with the team. Want to learn more about how you can be eligible to receive a guaranteed entry through OAR into the 2012 NYC Marathon? Contact Lily Matusiak at run@researchautism.org or call 703-243-9710.
Dubbed “America’s Toughest Road Marathon,” the Blue Ridge Marathon and Half Marathon did not hold back the RUN FOR AUTISM-Blue Ridge team, which persevered through rain to cross the finish line in Roanoake, Va., on April 16. The race expo gave registrants a chance to take care of pre-marathon business while shopping, enjoying local music, and finding out the best places to carbo-load from local volunteers, called sherpas. An added pre- and post-race bonus was the chance to enjoy Down by Downtown, a city-wide music festival, going on during the weekend. With a flood watch in effect the morning of the marathon and half marathon, runners knew that the already challenging course would now have a few added obstacles: lots of puddles. But that didn’t stop hundreds of dedicated runners, volunteers, and spectators from showing up on race day. RUN FOR AUTISM alum Pete Jewett and RUN Director Lily Matusiak ran the first mile together, before setting out at their respective paces to tackle Mill Mountain at Mile 1. “It was funny to watch some of the runners tackle the first few steps of the race in garbage bags, hoping not to get too wet. But race day weather in the spring is always a mystery and a lot of the runners trained knowing that the race could be hot or cold, wet or dry,” notes Matusiak. The rain tapered off a bit as the runners climbed Mill Mountain into a low-hanging cloud. Four miles later, the half marathoners were at the bottom and racing their way through Roanoke’s picturesque neighborhoods. Even in the rain, locals came out to support the race, directing runners along the course, cheering them on, and even handing out treats along the way. About 90 minutes after start time, the rain picked up again, but RUN FOR AUTISM runners stayed the course to achieve their goals. Matusiak crossed the finish line in under two hours. Jewett, who knew the course well after running the race in 2010, followed 20 minutes later, looking strong, especially after completing the Tobacco Road Marathon two weeks earlier. The RUN FOR AUTISM team and staff would like to say a big “thank you” to Lisa Teegarden-Cabay for braving the rain to volunteer at the start line and along the marathon course. With such a gorgeous course and well-supported race, OAR and the RUN FOR AUTISM look forward to returning to Roanoke next year to battle the mountains, hopefully in sunshine. Why I RUNThree Boston Runners; Three Reasons to Run Ruben Coryat, Andrew Mathias, and Eric Lees don’t know each other but they have a lot in common. They all ran the Boston Marathon (Mathias running a shadow marathon in Afghanistan). They all ran to raise money for OAR. And they all had very good reasons for running. Pushing Forward Why does he run? He runs for C.C. Forest, his neighbor and friend across the street who has autism. In the article, he calls autism a “powerful cause for which to raise awareness and a reason to push forward even when my body doesn’t want to.”
"What I have is that human feeling that you know when a baby would cry a father would pick it up and try and soothe it," explains Coryat. Through his run in Boston and the Houston Half-Marathon, Coryat has raised a total of $1,100. Running for James Back home in the United States now, he explains why he chose to add training for a marathon and long-distance fundraising to his already full days. “I chose to raise money for OAR, because my older brother James has autism and I'm sure he could have benefited from an organization like OAR when he was 3 years old and first diagnosed. OAR is devoted to autism research in effort to help my brother and many, many others like him.” Through his fourth marathon, Mathias raised $1,312 for OAR in honor of James. Taking Every Grueling Step
His company, EarthLink Business, was one of the marathon’s sponsors. “This was my company’s second year sponsoring the marathon, so I was following the lead of my co-workers from the previous year in running for a charitable cause.” Two close friends, Jennifer Owens and Joe Varga, he says, are raising children with autism. “They are the most selfless and loving people I know in the world. To run a marathon would be a walk in the park compared to what they deal with on a daily basis, and I wanted to dedicate every grueling step to them and eradicating autism. It was without a doubt the most difficult thing I've ever done mentally and physically but I finished it in three hours, 49 minutes, and 25 seconds, using every single ounce of willpower to get me there.” |
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Dana Commandatore is an advertising director, author, disability advocate, and mother to a son with autism. Commandatore and her husband, actor Michael Broderick, started 
Jane Barbin, PhD, BCBA-D, wouldn’t necessarily put it this way, but her 10-year old firm offers its clients, which include families, caretakers, educators, and schools, evidence-based hope—that their children can change behavior, increasing the quality of their lives and improving their chances for a productive future.
OAR is excited to partner with Milestones for Life-Long Strategies for Success: Milestones 9th Annual Autism/Asperger’s Conference on Tuesday, June 21 in Cleveland, Ohio. In this first test of its Conference-on-the-Road initiative, OAR will offer four speakers—two of them OAR-funded researchers—discussing ideas for translating cutting-edge research into practice. Through its support of the Milestones conference, OAR will have the opportunity to share information and interact with 650 parents and professionals in the Cleveland area. 
The Bank of America Chicago Marathon winds through 26.2 miles of Chicago’s historic and vibrant neighborhoods and is known throughout the world as the pinnacle of athletic achievement for elite and everyday runners alike. The October 9 event sold out in record time this year, but as a longstanding charity partner with the race, OAR is privileged to have guaranteed entries still available to runners willing to support our cause.
It’s time to lace up those sneakers and hit the streets of the Nation’s Capital for the 2011 RUN FOR AUTISM—Washington, DC team!
What do Staten Island, Brooklyn, Queens, the Bronx, and Manhattan have in common? They are the five boroughs that comprise what some would say is the best city in the country, if not the world. They also happen to be part of the course for the New York City Marathon, coming up on November 6.
