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February 2011 |
OAR NewsOAR Conference Goes on the Road OAR is taking its conference on the road in 2011. Part of OAR’s mission is to get the latest research-based information into the hands of those who need it most. For the past eight years, OAR has held an annual conference in Arlington, Va., covering autism topics across the spectrum and throughout the lifespan. While the conference consistently earned high marks for its speakers and content, it fell short of the mark with respect to its reach. This new initiative will give OAR the chance to reach more people more effectively and efficiently than through a stand-alone annual conference. In its first attempt to go mobile, OAR will be partnering with other well-established conferences that share OAR’s dedication to applied research and evidence-based practice.
OAR is delighted to announce its first partnership events. The annual Milestones Autism/Asperger's Conference, taking place in Cleveland, Ohio, on June 21, will mark the debut of this new concept. Now in its eighth year, this event has established itself as a high quality educational forum built on the foundation of good science and evidence-based practice. Stay tuned for more information as this event gets nearer! Read more about the Milestones Autism/Asperger’s Conference. The second road test will occur October 13-14, when OAR offers an OAR Track on each day of the annual Autism New Jersey conference to be held in Atlantic City, N.J. The OAR Track will feature presentations by three members of OAR’s Scientific Council on one day and three OAR-funded researchers on the other. For more information on the Autism New Jersey conference, visit www.autismnj.org/29thAnnualConference.aspx.
OAR Announces Topic for New Life Journey Guide OAR is excited to announce the title and focus of what will be the seventh publication in its Life Journey through Autism series. Life Journey through Autism: Navigating the Special Education System will offer background, information, and strategies to help guide parents in their roles as principal advocate for their child’s public education. While OAR touched on some of these topics in previous guides, Navigating the Special Education System will delve more deeply into the subject. OAR chose this topic based upon feedback received from parents and others in the autism community. These sources, many in military families, indicated that they felt outnumbered and overwhelmed when thrown into the special education system and forced into becoming experts without guidance or support. OAR’s new guide will offer the information that will help parents advocate for their child and interact with the special education system more confidently and effectively. Easy to understand and use, this guide will:
Currently in the first draft stage, Navigating the Special Education System will progress through reviews at the staff, Scientific Council, and Board levels before the final draft undergoes review by a selected group of reviewers from the autism and special education communities. OAR intends to publish it in hard copy and simultaneously make it available for download from OAR’s Web site by the end of October 2011. If you would like to volunteer to review the guidebook, please e-mail Allison Gilmour at agilmour@researchautism.org.
OAR Guidebook Addresses Unique Needs and Challenges of Military Families
“The most amazing part to me is how people from different military bases in different services will call and say they saw OAR’s guide and they need as many copies as we can send,” says OAR’s Director of Programs and Community Outreach Allison Gilmour. “It’s really spread like wildfire over the past few months.” Why is this guidebook so popular? It addresses the unique and very challenging task of not only being a parent of a child with autism, but also being in the military. According to some of the people who have contacted OAR, it does it well. Chaplain Jose Martinez found Operation Autism and A Guide for Military Families after noting how many of the National Guard families he serves in Missouri have children with autism. In the process of learning more about autism, Chaplain Martinez discovered and then contacted OAR. He plans to use the guidebook to help start a support group for families in his area facing the struggles of being a military family with a child on the spectrum. OAR is thrilled to be supporting these families in any way as a “thank you” for their service. Col. Beth Ellen Davis, M.D., at Madigan Army Medical Center, Tacoma, Wash. makes up to four new diagnoses of autism every week. She uses the guidebook as information for families directly after receiving a diagnosis. For finding resources when moving, Col. Davis often directs families to the Local Supports portion of the Operation Autism Web site. Cicely McCray, who works with families at Joint Base Charleston, S.C. frequently uses A Guide for Military Families in her work. She tells parents that the guide is good for, among other things, getting “a handle on what all the different autism terms mean. Once you've mastered autism's vocabulary, it will be easier to communicate with the doctors, teachers, and therapists who are trying to help your child.” OAR plans to continue helping military families by distributing this resource for free. You can follow the growing reach of the guides by visiting the Operation Autism map. To download or request copies of the guide, follow the directions provided on the Operation Autism Online Web site at www.operationautismonline.org/guide-for-military-families.
Rather Eat than Run? Then Tapas for a Cause Is Just for You
La Tasca, a Spanish restaurant, offers more than 45 tapas dishes, menu specials, six different paellas, 12 sangria blends, Spanish wines, and beers. With such a variety, La Tasca has something for everyone. So show your support and join OAR for Tapas for a Cause. For more information on La Tasca, including a menu, visit www.latascausa.com.
Write All About It As OAR expands its outreach and delivery of resources in 2011, it is seeking to expand its list of authors and contributors to The OARacle by building a bank of people who would like to submit articles for publication. OAR invites people with autism, parents or siblings of people with autism, clinicians, and educators to submit first person or “how to” articles (750 words or less) related to autism, research, or research to practice. If interested, contact Alyssa Kruszyna at 703-243-9717 or akruszyna@researchautism.org. News from the RUN FOR AUTISMTough It Out or Enjoy the Look Out on the Blue Ridge If you want a half marathon with gorgeous views or a full marathon with equally compelling vistas and considered America’s “toughest road marathon,” look no further than the Blue Ridge Marathon and Half Marathon, which takes place April 16.
But don’t wait if you want to be among the first 10! For that matter, if you want to participate in the Blue Ridge with OAR, you should sign up now because OAR only has limited entries! Following the Blue Ridge Parkway, this challenging and beautiful course was created by a number of dedicated local runners. Both races begin in quaint Roanoke, Va., in front of the Taubman Museum of Art, follow separate routes to the Parkway, and end back in Roanoke as well. To give you some idea of the challenge, this year’s full marathon course climbed over 3,600 feet and over 7,200 feet of combined elevation change. Marathon organizers write that the “uphill portions will test each runner’s strength and endurance while the equally challenging downhill sections are sure to weed out those who are unprepared. The breathtaking views and stunning Blue Ridge Mountain scenery will offer some reprieve to runners as they persevere to the finish line.” Full marathoners will get their breathtaking (in a literal sort of way) views from the brutal Roanoke Mountain while half-marathoners will enjoy views from Mill Mountain during their more gentle but still challenging run. If you join OAR for this event, consider extending your Blue Ridge stay into a scenic and enjoyable vacation. The greater Roanoke area is a perfect getaway for outdoor enthusiasts with easy access to some of the best cycling, fishing, water sports, and hiking on the east coast. Some of the highlights include: boating on Smith Mountain Lake or Lake Moomaw; over 140 miles of trails that are part of an extensive greenway system; trout-fishing in the region’s numerous streams and lakes; and scenic hikes along the Appalachian Trail. You can also enjoy more relaxing and/or urban pursuits within Roanoke’s city limits. For more information on the Blue Ridge Marathon and Half marathon or other RUN FOR AUTISM opportunities, please go to our Web site at www.runforautism.org or e-mail run@researchautism.org with any questions.
May Showers the RUN FOR AUTISM with Races Galore This coming spring is bringing as many races as flowers for the RUN FOR AUTISM program. OAR invites you to join the fun during its busiest spring weekend—May 14 and 15.
Pittsburgh Cleveland The course is flat and fast, and winds through downtown Cleveland’s major landmarks, including the Rock and Roll Hall of Fame and Browns Stadium. For an extra challenge, runners can complete the “Cleveland Double,” running in the 5K race on Saturday, then the full marathon, half marathon, or 10K on Sunday! For those committing to the Double, registration for the 5K is free. Whether our runners will be taking the streets in the City of Bridges or in the Rock & Roll Capital of America, this May race weekend is guaranteed to be exciting, busy, and fun! If you’re interested in participating in either race weekend, please contact the RUN staff by emailing run@researchautism.org or call Lindsey or Alexandra at 703-243-9710.
One Singular Sensation: OAR Unveils New Race Shirt
OAR is thrilled to announce the arrival of its newly designed race singlet. The new race shirt, which is a tank style top, comes in both men's and women's cuts and is modeled after OAR's new TRI FOR AUTISM tri top by Sugoi. The sharp navy blue and teal top features the orange OAR sun logo on the front and the RUN FOR AUTISM logo on the back. "We're so pleased with the updates to the race shirt and it sounds like the runners are too. We’ve already received lots of positive feedback," comments RUN FOR AUTISM Director Lily Matusiak. "The technical shirts are high quality and have a sharp design. We can't wait to see them in action at the New York City Half Marathon next month!" That's right -- the first team to launch the new top will be the New York City Half Marathon, where over 80 RUN FOR AUTISM participants will hit the streets of the Big Apple in style. Want to show your motivation in the latest RUN FOR AUTISM race shirt? Join one of our half or full marathon teams today at www.firstgiving.com/oar. Or pick your own race and sign up for OAR's iRUN FOR AUTISM program which allows YOU to pick any race, any distance, anywhere and raise money for autism research. For more information, please contact run@researchautism.org or call Lily Matusiak at 703-243-9710.
Come Cheer On OAR’s NYC Half Marathon Team!
Your spirit will help spur OAR’s RUN FOR AUTISM team on to some spectacular finishes. Bring your favorite noisemaker—cowbells, clappers, kazoos, and even vuvuzelas are all welcome! Join the OAR Cheer Squad today by contacting Chelsea Steed at run@researchautism.org, and start practicing your best fist pumps now! News from the Autism CommunityACT Today! Offers Funding for Families
Recognizing the extraordinary circumstances military families face today, ACT Today! has also launched ACT Today! for Military Families, a dedicated fund to assist military families impacted by autism. Using the same grant process, they use funds for the express purpose of helping military families with children with autism. The organization funds grants on a quarterly basis. Grants are being accepted from April 1 through April 30 for the second quarter and families who receive grants will be notified on June 15. To find out more, visit the Grant Program section of ACT Today!’s Web site at www.act-today.org/act-today-grant-program.php or the ACT Today! for Military Families site at www.acttodayformilitaryfamilies.org/apply_autism_grant.aspx PerspectivesPaying Attention to Today’s Needs: Reflections from the OAR “Family”
Michael John Carley, Self-advocate, Parent, Asperger Organization Founder and Leader
Carley and his organization have teamed up with OAR for past projects, including evaluating the first Schwallie Family Scholarship applicants and producing two DVDs on college life. “Much of our involvement was generated by our longtime association with Peter Gerhardt, whom we recognized with our annual award in 2006.” OAR matters to GRASP, he says, because its members are the very people OAR is dedicated to helping now. GRASP is the largest organization comprised of adults on the autism spectrum. Carley is also executive director of the soon-to-be-launched Asperger Syndrome Training & Employment Partnership (ASTEP) that will work on vocational issues from a corporate perspective. Carley and his son, then 4, were both diagnosed with Asperger Syndrome in 2000. Suzanne Letso, Parent, Educator and Service Provider, OAR Scientific Council
“In fact that is still the case today,” she says. “One of the aspects of OAR that is very important to me is that the research we fund directly affects the lives of people with autism in a relatively short period of time. Most of the projects funded by OAR are completed within a year, or two at the most. The results of these studies begin to impact lives – and have also enabled researchers to obtain larger grants to expand their findings – almost as soon as the study has been completed.” As a long-term advocate for the autism community as well as the parent of a 21-year-old son with autism, Letso believes that OAR’s work is critical because it not only focuses on “creating new knowledge about the condition of autism but also on sharing ‘cutting edge’ best practices as broadly as possible. OAR provides information and resources free of charge so that people with autism, their families, and communities have immediate access the resources they need to educate, advocate, and enjoy life.” Research 2011Study: Randomized Clinical Trial of Mind Reading and In Vivo Rehearsal for Children with HFASDs Researchers: Purpose: The purpose of this randomized clinical trial is to evaluate the efficacy of an innovative multi-component manualized treatment on the emotion recognition skills and autism features of 7- to 12-year-old children with HFASDs. Why Is This Study Needed? Study Methodology In Brief Treatment is administered during 24 90-minute sessions (over 3 months) and active components include an interactive emotion-recognition software program, Mind Reading; in vivo rehearsal trials; and a structured behavioral reinforcement system. Each treatment session is manualized to ensure implementation is standardized, participants meet time parameters using and accessing areas of the Mind Reading program, content is prescribed, and fidelity is monitored and maintained. Mind Reading is an interactive software program featuring 412 emotions organized into 24 emotion groups and by 6 emotion levels. It includes an Emotions Library, Learning Center, Games Zone, and Rewards Zone. In the current intervention, participants will complete emotion groups of up to 10 emotions a total of two times over the 24 sessions from Levels 1, 2, and 3 (comprising 98 of the “Top 100” emotions). Mind Reading also includes an internal reinforcement system in which children earn tokens for accurately completing questions in lessons and quizzes within the program (to be used in the Mind Reading Rewards Zone). Given reduced treatment effects on non-Mind Reading outcome tasks in prior studies and need for practice of new decoding skills in naturalistic situations, this study includes in vivo rehearsal trials. Each 90-minute session is divided into five intervals. During each interval, a staff clinician displays a facial emotion and asks the participant to identify the emotion (decoding) and to display a specific emotion (encoding). To receive point-based reinforcement for the in vivo trial, the participant is required to accurately respond within five seconds. In vivo trials are conducted in a one-to-one format between the staff clinicians and child participants. To foster generalization, emotions used during rehearsal trials parallel those taught during Mind Reading instruction. A behavioral reinforcement program is used to generalize skills (via in vivo trials) and increase on-task behaviors. During each of the five session intervals, participants earn points for identifying/displaying emotions during in vivo trials, following program rules, exhibiting prosocial behaviors, and refraining from negative social behaviors. Each child’s performance in the behavioral reinforcement system is reinforced at home by parents and participants must earn at least 75 percent of their points to receive a home reward. Collaboration with parents in determining rewards is used to foster parental attention to target emotion-recognition skills and behaviors. Outcome measures consist of a direct child measure of emotion recognition skills, a parent rating scale assessing child emotion recognition and display skills, a parent rating scale assessing autism features, and parent and child satisfaction surveys. A follow up will be done one to two months after the treatment to assess skill generalization and maintenance. Researchers Dr. Marcus Thomeer and Dr. Christopher Lopata are professors at Canisius College in Buffalo, N.Y. In 2009, they created the Institute for Autism Research at the college. The Institute for Autism Research conducts leading-edge research on autism spectrum disorders, and provides researchers and affiliated faculty with the facilities necessary to study and treat autism spectrum disorders in a collaborative manner.Applying Researchby Allison Gilmour, Director, Programs and Community OutreachWhat to Look for in a Social Skills Training Group Social skills training groups (SSTG) are programs used to address deficits in social skills often experienced by youth with autism. These groups are particularly popular for adolescents with Asperger Syndrome and high functioning autism. Improving social skills can greatly increase quality of life by increasing opportunities for forming friendships and even maintaining employment. In a recent literature review of SSTGs in Research in Autism Spectrum Disorders, Catherine M. Cappadocia, M.A., and Jonathan A. Weiss, Ph.D. looked at the components that make SSTGs successful. While different SSTGs used different curricula, most include direct instruction, modeling, and role playing. Usually skills are taught in a progression from simple (greetings) to more complex (recognizing sarcasm). Even SSTGs that do not advertise as using cognitive behavioral approaches (self talk, relaxation techniques, self monitoring, etc.) usually include these components. Since most SSTGs include the elements above, what sets apart particularly successful programs? The keys to successful SSTGs, according to the review, were those that included:
Adolescents with Asperger Syndrome and high-functioning autism in these programs showed the most sustained improvement after intervention and the most generalization of skills. Groups with parent support groups or without parent participation did not show success with generalization or maintenance of skills. Youth whose parents participated in training or simply received handouts about using and monitoring social skills outside of the group showed the greatest gains in social skills. Reference Cappadocia, M. Catherine and Weiss, Jonathan A. (2011). Review of social skills training groups for youth with Asperger syndrome and high functioning autism. Research in Autism Spectrum Disorders, 5 (1), 70-78. Putting the FUn in FundraisingOAR’s Top RUN Fundraisers Say, Go Ahead and Break It! With $223,000 in research grants just awarded, successful programs to continue, another round of scholarships for individuals with autism approaching, and new demands like putting Life Journey through Autism: A Guide for Military Families in the hands of military families around the world, OAR’s need for money to meet the demands of these programs in 2011, its 10th anniversary year, will expand. Happily, OAR has a committed core of RUN FOR AUTISM fundraisers and new ones signing up every year. Three of those fundraising stars shine brighter than the rest because they represent the pinnacle of what is possible. One is the current OAR record-holder; the other two are within striking distance of setting a new one. Aaron Lieberman He’s been a runner for 15 years but it wasn’t until his son, David, 12, was diagnosed with PPD-NOS in 2001 that Lieberman began wondering what he could do to help his son and others on the autism spectrum. “I got involved with the local Autism Society of America chapter and knew about the walks they do but I really wanted to run for autism.” In 2004, the year he turned 40, Lieberman decided to run the Chicago Marathon and raise money for OAR, which he found through Internet searching. It was there, among family, that he set his personal record in 2001. There was a hitch though. OAR had started its RUN FOR AUTISM program the year before and the only marathon with which it was officially affiliated was the Marine Corps Marathon. Lieberman didn’t let that stop him. He picked up the phone and called OAR Executive Director Mike Maloney and told him what he wanted to do. “He told me that OAR wasn’t affiliated with Chicago yet but I should do what I can and OAR would lend support as needed.” His fundraising philosophy, he explains, was based on one core concept: “I wanted it to be easy for people.” He settled on sending e-mail because, he thought, it would be easy to pay attention to, disregard, or delete. Lieberman also decided to send the e-mail out to as many people as possible. “I thought it would be great if I could get 1,000 people to give me $10.” In addition to sending his own e-mails, he also asked a few key friends and family members to send the e-mail out to their networks. To Lieberman’s delight, no one gave $10. Everyone gave more. “The first donation that came in was for $400 or $500.” In his professional life, Lieberman is a financial planner and an avid runner in his free time. Goals and targets, and meeting those goals and targets, get him pumped up. “It was really exciting to see my goals being reached.” Each time he got close to his set goal, he raised it so people wouldn’t think he didn’t need their donations. As a goal-setter and believer in OAR’s mission, Lieberman’s advice for others out there is to go ahead and break his record. “I hope someone raises $50,000. I would enjoy trying to beat that record next time.” Lieberman, who interviewed Maloney during their initial phone conversation to make sure that at least 80 percent of the money he raised would go to programs and not overhead, says that the bottom line for him was that “OAR would make a difference in the lives of people with autism and their families today. Lots of organizations are out there trying to find a cure but families also need help right now dealing with autism.” Scot Binder How did he do it? You might say frustration sent him right over the edge and into fundraising with a passion. In 2005, his son, Luke, 10, was diagnosed with Asperger Syndrome. As Binder and his wife sought help and resources for their son, they met a lot of ignorance about Asperger Syndrome specifically and autism generally. “So little is available for Luke in the educational system. He’s very, very bright so he satisfies all of the state testing minimums and that is all they are obligated to teach to.” The Binders are determined that Luke will be able to take advantage of all the educational opportunities he needs to graduate from high school and then continue on from there. Primarily a triathlete who has also done biathlons and 10Ks, Binder decided it was time to channel his frustration into a RUN FOR AUTISM event when a friend told him about OAR on their way to a race. Finding out about OAR gave Binder a reason to run. “When I checked OAR out and read about its funding of research and development of educational programming, it just seemed logical that I support it. Not because I thought it would help my son but to help the kids and families that are coming behind us.” Having a mission as he trains has been a bonus, he says. “I feel as if I am giving back something, to someone who I will never meet, doing an act of random kindness.” Binder’s fundraising formula has been to apply timing and strategy to his passion. “Luke is my best friend, and if someone gets me started talking about him, there is no stopping me. Talking to people about Luke has been the best part of raising money for OAR.” As a manager in the construction industry, he had a list of corporate contacts he thought would be receptive to a request for contributions. Armed with that knowledge, he waited until the week after Thanksgiving, around the time that corporations were preparing their bonus lists. He then sent a personal e-mail to about 45 corporate contacts. “I figured they would mentally be in a giving mood.” He was right. “After they received my e-mail most called or wrote me back. I had them at hello.” After the half marathon, Binder will return to triathlons. He’s hopeful that he can raise money for OAR through triathlon events near his home. “There is a great race in September called the Toughman ½ Iron Man in Westchester, N.Y. Or the New York City Triathlon. If OAR gets involved in those, I will find a way to raise more money!” Rod Lauredo As if an impressive goal wasn’t enough, he’s decided to raise the money by participating in the Palm 100K, which translates to 62 miles, on March 26. He figures that after three years of asking the same people to support him, he needed a Wow! factor in his new fundraising appeals.“Something to say: ‘Hey, thanks for your contribution these past few years, but THIS year let’s both of us take it to the next level. I’ll double the miles and you double the contribution.’” And it worked, he notes. “My fundraising for those three years ranged from $6,370 to $7,171 per year. Thus far, for this effort, I’m at $14,135 with a month left to go before the 100K.” But running is not just a challenge. It’s a reminder. As Lauredo watched his son, Oliver, 19, grow up as a person with autism, he realized that for children with autism, “doing things like learning to read, learning to drive, learning how to build social relationships is tough, tougher than anything I’ve done athletically.” He looks to people with autism as his role models. “People on the spectrum seem to have intense work ethics and I think that’s why. Every single accomplishment in their lives is hard-won. It often makes them very tough and determined. They do not quit easily.” Lauredo has been lucky to have a ready audience for his fundraising. “As an asset manager who manages commercial real estate, I contract property managers, law firms, engineering firms, appraisers, real estate brokers, and others. For those contributors, making a contribution is like taking a client out to dinner, to a ballgame, or fishing.” (And he hates fishing, he says, so he’d just as soon have a contribution to OAR.) He also finds that his fundraising reveals that people he’s known and worked with for years also have someone in their lives who have been affected by autism, a sibling, a child, a nephew. “We knew each other, but never knew we had an autism connection in common.” That connection makes those friends and colleagues happy contributors and builds a bond. For anyone reading this, says Lauredo, “who is about to start their first RUN FOR AUTISM effort: be prepared for a lot of really nice personal surprises from your old friends. It’s just been an amazing revelation to me how many people’s lives are touched by autism.” One more thing, Lauredo adds, “for your readers. I hope that distinction [of being among the top three fundraisers] doesn’t last long. I hope to be dropped to number 13 by year-end 2011!!”
Dressed For Complete Fundraising Success When you’re training for a RUN FOR AUTISM event and trying to fundraise and trying to keep up with your personal and professional lives, the idea of a special event may be just what sends you over the edge into All Stressed Out and Nowhere to Go. But Randy Horowitz, who runs regularly for OAR in the New York City Half Marathon and who has done the Marine Corps Half Marathon, says that, actually, a special event can send you into just the opposite place—Dressed for Complete Success—with no need to dress up at all. Unless you want to. As the associate executive director of educational services at the Eden II Programs in Staten Island, N.Y., Horowitz is up front about the fact that she is already surrounded by colleagues, clients, and others who know and understand why she is raising money for autism research. She believes that anyone can do what she’s done with special events though. Adding an event (or two) to your fundraising strategy, she says, may actually bring more contributions in while reducing the amount of work you have to do. For example, she points to a raffle she and a coworker held two years ago. “We used American Express points that a colleague had to purchase a 42-inch flat screen TV.” They sold the tickets for the TV for $20 a piece, netting $4,000 in the process. She and her colleague gave $2,000 to Eden II and $2,000 to OAR. She also held an event at a bar in Staten Island, providing food, drinks, and entertainment for $40/person. “This event took more planning and work because it was more complicated,” she notes, but it netted $4,000 in contributions. Horowitz worked hard to cut down on the event’s overhead by asking friends and colleagues to donate. A local printer provided the flyers, a caterer provided the food for free, and friends in a band agreed to be the evening’s entertainment. “At the event, we did a 50/50 raffle and also gave away other prizes,” says Horowitz. Here are her tips for successful fundraising events: 2. Don’t be afraid to ask for contributions. You may not get everyone to donate in-kind goods for free, she says, but you’ll be surprised how many people are willing to give what they can. 3. If you do a raffle, keep in mind that some people may go in as a group to buy tickets. Consider giving away something, like cash, that can be shared. Science, Fads, and Behavior Analysisby Thomas Zane, Ph.D., BCBA-DThe Vaccine and Autism Connection: The Wakefield Study Once Again Discredited
In January 2011, the British Medical Journal (BMJ) published detailed critical analyses (2011a; 2011b; 2011c) by Brian Deer, investigative reporter, of the controversial link between the MMR vaccine and autism, focusing on the original study by Andrew Wakefield, et al. (1998). These new revelations should permanently dispel the connection between the two. This new information at the same time underscores the importance of adhering to the scientific method and open and full disclosure of the scientific and research process. The recent discoveries of what seems to be flawed and unethical research are summarized here (for full information, please read the BMJ articles by Deer). The findings can be grouped into problem with the subjects, methodology of the Wakefield study, potential researcher biases, and ethical behavior on the part of the researchers. Problems with the Subjects Another major problem with the Lancet study concerned participants having problems that were linked to vaccine, but that, in fact, existed prior to getting the vaccine. For example, one child had (previous to the administration of the vaccine) already been diagnosed with regressive autism and diarrhoea. Another child was described in medical reports prior to starting the MMR study as presenting “recurrent diarrhoea,” “developmental delay,” “general delay,” “restricted vocabulary,” “and “....a very small deletion within the fragile X gene,” with the parent noting that she had concerns about his developmental progress when the child was only 18 months old. Regarding the diagnosis of regressive autism, Wakefield and colleagues said that nine of the subjects clearly demonstrated signs of regressive autism after the vaccine. However, upon review of medical records, three of the nine clearly had no such symptoms. And these three didn’t even have a clinical diagnosis of autism, either at admission or discharge from the hospital after completion of the study. A recalculation of results now shows that of the 12 subjects, six were reported to having symptoms following the vaccine, but six did not, a random result, not the effect of vaccines. Study Methodology and Researcher Bias However, Wakefield and his colleague, Richard Barr, seemed to have a very clear agenda in mind. On a research application for funding for a study to follow the original Lancet research, they wrote, “The objective....is to seek evidence which will be acceptable in a court of law of the causative connection between either the mumps, measles, and rubella vaccine or the measles/rubella vaccine and certain conditions which have been reported with considerable frequency by families of children who are seeking compensation” (Barr & Wakefield,1996). Potential researcher bias towards a preferred outcome is clear here. Another problem with the design of the experiment involved poorly defined dependent variables with little apparent regard for reliability of measurement. For example, the researchers described one child as demonstrating “behavioural symptoms” as a result of the vaccine. In fact, medical records indicate that the child actually had a chest infection. Another research problem with Wakefield’s original study concerns replication of results. Although given ample opportunity to do so, Wakefield has never attempted to replicate his findings. It is now known that Wakefield was employed by and working for attorneys who were building a lawsuit against vaccine manufacturers. Deer reported that Wakefield was being paid £435,000 to build a case linking the MMR vaccine to autism. Furthermore, Wakefield was planning on developing a diagnostic test that would detect measles virus in the bowels or other bodily fluids. This diagnostic procedure would be quite lucrative if Wakefield could prove that the MMR vaccine caused the “leaky gut” and developmental delay that he hypothesized. Ethical Lapses However, Deer found otherwise. The Ethical Practice Committee had approved data collection from investigations that were clinically indicated, which these tests were not. There were such significant problems with this original research that in 2010, the General Medical Council of England judged Wakefield and colleagues to have committed around 30 serious ethical charges, including dishonesty (four counts) and subjecting participants to medical tests that were not justified. Wakefield is appealing these findings. What The Wakefield Study Can Teach Us The Wakefield study undeniably triggered the vaccine-autism hysteria and the anti-vaccine scare across the world, resulting in a distrust in childhood vaccines that still exists today. It is a case study of how so many aspects of the scientific method were apparently violated. Deer’s investigations have shown that Wakefield developed a shoddy research design that does not stand up to the light of public scrutiny, and there is ample evidence to suggest that he was conducting an experiment to find proof that would support his previously held belief. References Barr, R., & Wakefield, A. (1996). Proposed protocol and costing proposals for testing a selected number of MR and MMR vaccinated children: Proposed clinical and scientific study - a new syndrome: disintegrative disorder and enteritis following measles and measles/rubella vaccination? 6 June (unpublished). Deer, B. (2011a). How the case against the MMR vaccine was fixed: Part 1. British Medical Journal, 342:c5347. Deer, B. (2011b). How the vaccine crisis was meant to make money: Part 2. British Medical Journal, 342: c5258. Deer, B. (2011c). The Lancet’s two days to bury bad news: Part 3. British Medical Journal, 342: c7001. Justice Awareness and Basic Support (JABS). 2011. Retrieved January 20, 2011 at www.jabs.org.uk Wakefield, A. J., Murch, S. H., Anthony, A., Linnell, Casson D. M., Malik, M., et al. (1998). Lleal lymphoid nodular hyperplasia, non-specific colitis, and pervasive developmental disorder in children. Lancet, 351:637-41 [retracted]. |
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Dine at La Tasca in Arlington, Va., on Tuesday, April 5, for Tapas for a Cause in support of OAR and Autism Awareness Month. La Tasca will donate between 10 and 20 percent of the day’s sales to OAR; the higher the sales, the more the donation! No need to mention the promotion when you arrive -- just eat lunch or dinner and La Tasca will automatically count your meal towards the total.
You can take on these events as part of OAR's first RUN FOR AUTISM-Blue Ridge team. As a special incentive to join the RUN FOR AUTISM-Blue Ridge team, OAR is offering runners something special—complimentary race entry for the first 10 runners who commit to raising $300.
OAR is recruiting runners and volunteers to help out in Cleveland and Pittsburgh as the RUN FOR AUTISM teams take on seven different races. 
The Rite Aid Cleveland Marathon weekend on May 14-15, features a full marathon, half marathon, 10K, and 5K. OAR will have will have runners in all three of the Sunday races, 10K and up, and will make its debut as the Presenting Charity at the 5K on Saturday. All in all, OAR will have over 400 runners throughout the weekend. 
If you want race day excitement without the months of training, OAR has just the spot, at our Cheer Station along the New York City Half Marathon course on Sunday, March 20. OAR is putting together a squad of energetic and peppy volunteers and stationing them in the later miles of the race. 
ACT Today! is a national nonprofit 501(c)(3) organization whose mission is to raise awareness and provide treatment services and support to families to help their children with autism achieve their full potential. As part of that mission, ACT Today! sponsors a grant program to help families who have a child with autism obtain services ranging from applied behavior analysis therapy to social programs to safety equipment and prescriptions and medications.
“OAR is the only hope for finding out how many people on the spectrum need jobs right now, need housing right now, or are unhappy right now,” says Michael John Carley, executive director of GRASP, an educational and advocacy organization serving individuals on the autism spectrum. “The vast majority of research funding goes towards the bio-medical world. The bio-med work has its raison d'etre, but ideally we would like to see infinitely more attention paid to the research needs of the living; of those who need help now.”
As one of the original members of the Scientific Council of OAR (SCOAR), Suzanne Letso, co-founder and CEO of the Connecticut Center for Child Development, believes that “OAR’s mission filled a void that no other organization was addressing.”
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. 