OAR News
It’s Coming Right Up
Join Us for the OAR Conference at the End of October
On October 29-30, OAR will host the 8th Annual Applied Autism Research and Intervention Conference at the Sheraton Crystal City in Arlington, Va. Conference attendees can take advantage of sessions from four tracks, two featured each day: OAR Sponsored Research, Research to Practice, Education for School Age Learners, and Transition and Life in the Community. Read more about conference sessions and keynote presentations in the June, July, and August issues of The OARacle.
New “Meet the Speakers” Reception
OAR is delighted to hold a special “Meet the Speakers” reception on Friday, October 29, directly following the closing keynote speech. KDH Research and Communication, a research institution that constructs and evaluates public programs based in Atlanta, Ga., is sponsoring the reception. Without KDH’s generosity, this much-anticipated event would not have been possible for this year’s conference.
OAR invites all attendees to enjoy this rare complimentary networking opportunity. The reception begins at 5:00 p.m. and will last until 6:00 p.m. Attendees can meet speakers from both days of the conference and discuss the day's events with others from the autism community. Light hors d’oeuvres will be provided.
New Early-Bird Deadline
OAR takes pride in hosting one of the most affordable and informative autism conferences in the country. Early registration prices are $100/one day and $175/both days, but this rate will not last forever. OAR has extended the deadline for this early-bird rate to October 4. This new closing date will coincide with the close of OAR’s discounted room block at the Sheraton Crystal City.
Starting Tuesday, October 5, prices will increase to the full registration cost of $125/one day and $225/both days and hotel rooms at the conference venue will revert back to regular rates. Don't miss out on this early-bird discount; register today!
Conference Raffle
As a special bonus, OAR will be holding a raffle for all conference participants who register before the October 4 deadline. One winner will be chosen at random to win a set of eight helpful books on autism, an assortment that will appeal to kids, parents, teachers, and others. Read about several of these selections on our blog at www.operationautismonline.org/blog. Register now!
For more information on the conference, please visit www.researchautism.org/news/conference or contact Alyssa Kruszyna at akruszyna@researchautism.org.
OAR Announces 2010 Graduate Research Grants
OAR is pleased to announce the results of its seventh annual Graduate Research Grant Competition. This competition, open to graduate students pursuing master’s or doctoral degrees, awards up to $1,000 and $2,000 respectively to those conducting research related to autism spectrum disorders. This year, OAR will make seven awards totaling $13,000 to six doctoral students and one master’s student. With these grants, OAR has awarded a total of $108,000 in research grants to 59 graduate researchers since the inaugural competition in 2004.
OAR received 21 research proposals this year. In evaluating the research proposals, two members of OAR’s Scientific Council reviewed and scored each proposal. The reviewers’ task was to identify the studies that best matched OAR’s research priorities and whose potential outcomes were most relevant for families. In keeping with OAR’s dedication to quality research, only the best of the best were selected for funding.
Commenting on this year’s competition and grant recipients, Peter Gerhardt, Ed.D., OAR’s Scientific Council Chairman, notes, “This was an impressive group. The range of research interests and quality of the winning proposals suggests that the future for autism research is in good hands with these young researchers.”
The 2010 grant recipients are:
Brian Barger, University of Georgia – Doctoral Grant
Temperament in Autism: A Study Using the Inventory of Children’s Individual Differences
Dana Battaglia, CUNY Graduate Center – Doctoral Grant
Word Association in Individuals with Autism Spectrum Disorders: Toward a Model of Lexical Access
Cristan Farmer, Ohio State University – Doctoral Grant
Characterization for Aggressive Behavior in Children with Autism Spectrum Disorders
Veronica Pamparo, University of Washington – Doctoral Grant
Improving the Quality of Shared Book Reading Experiences for Children with Autism Spectrum Disorder: The Effect of Dialogic Reading on Early Literacy Outcomes
Mi Na Park, University of California – Doctoral Grant
Improving Social Communication Impairments in Children with Autism Spectrum Disorders through Self-Management
Andrea Reinholz, University of Washington – Master’s Grant
Social Support for Culturally and Linguistically Diverse Families of Children with Autism Spectrum Disorders
Cheryl Shaffer, Rutgers, The State University of New Jersey – Doctoral Grant
Parenting Stress in Mothers of Preschool Age Children Newly Diagnosed with an Autism Spectrum Disorder
For information on the 2011 Graduate Research Grants Program, please visit OAR’s Web site or contact Alyssa Kruszyna, director, business operations and communications, at 703-243-9717.
Madeline Millman Retires from the Board After 14 Years of Dedicated Service
When Madeline Millman joined OAR’s board of directors in 2001, she saw how little interest was paid to or research done on autism in the scientific, academic, governmental, and fundraising circles. With a grandchild recently diagnosed with autism and an awareness of the growing number of children being diagnosed on the spectrum, Millman wanted to make a difference and “ensure that attention would be paid to this growing problem.”
She had previously served on the board of the Autism Society of America Foundation, leaving there to become one of the founding members of OAR’s board of directors. “Many groups were funding and doing scientific research, looking at causes and hopefully then findingcures. OAR was the only organization looking at applied research, helping parents and families to know what to do once their children were diagnosed with autism.”
After 14 years of combined autism service, it’s impossible, says Millman, to pick just one great initiative that OAR accomplished; there were so many. “We produced the freeLife Journey through Autism guidebook series for parents and educators and others; funded more than $2 million in new studies and disseminated the results via our Web site and journals; encouraged students with grants; and held both lay and scientific conferences to exchange ideas and share our information.”
OAR Executive Director Mike Maloney says that Millman deserves credit not only for her long service on the board but for her particular accomplishments during her time. “As a board leader, Mady was always asking tough questions and challenging the board and staff to do more,” Maloney recalls. “She was passionate, engaged, and effective as any board member I’ve seen. OAR’s success and accomplishments throughout the past nine years can be traced back in large part to the leadership and devotion of Mady.”
Three New Staff Members Join OAR
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New OAR staff members Lindsey (left), Bianca (middle), and Chelsea (right), pose for a quick photo. |
OAR welcomed three new employees to its staff in August: RUN FOR AUTISM Coordinators Lindsey Cook and Chelsea Steed and Assistant Director of Development Bianca Poll.
Bianca Poll
Poll began work on August 27 and she’s already set an ambitious goal: “While OAR focuses on providing applied research to educators, families, and clinicians as part of our mission statement, the staff has not had the time to really involve those who are passionate about the cause, but may not necessarily fall under those categories. I’d love to create more opportunities for our supporters to learn what differentiates OAR from other autism groups, and the different ways they can join us. I hope to make it easy for those who appreciate OAR’s work to give back to us.”
She’s got the perfect background—a bachelor’s degree in justice, law, and society from American University and a digital design certificate from the Corcoran School of Art and Design in Washington, D.C., as well a experience in nonprofit social service that includes a job with Second Genesis, Inc., a nonprofit addiction treatment center, and volunteer and board involvement with several nonprofit organizations in Washington, where she lives.
Poll was struck by something OAR Chairman Jim Sack said when they met, “He mentioned the fact that it is important to remember that those children featured by most autism organizations will grow up some day. The idea of funding research so that we as a community provide better tools for those on the autism spectrum really resonated with me. These children will grow up and when they do, we have to be prepared to incorporate them into society through job training, developing group homes, and more.”
She herself has already learned so much about autism, she says. “As someone without a strong background in developmental disabilities, I feel very lucky to be surrounded by academics in the field. I am really looking forward to learning more about autism spectrum disorders and meeting some of the leaders in the field at the conference this year.”
Lindsey Cook
Cook is not surprised to find herself at OAR, where she began her job on August 9. “I have always known that I would have a career in the health field and in the nonprofit world. I graduated with a master’s degree in public health from Indiana University, after getting undergraduate degrees in biology and Spanish also from Indiana. An internship and a job in health policy brought me to D.C. in 2008. I missed working directly with people, helping them achieve their goals,” she says. Since that desire to work with people is coupled with a passion for running for a greater cause, Cook considers herself lucky to be exactly where she is.
She has volunteered ever since she was a young adult and ran her first marathon in Chicago in 2009. She completed her first full Ironman with two friends in August. “It was amazing how much I was able to raise awareness about OAR during the race since I wore OAR race tops the whole day. I am now hooked and plan on participating in another Ironman next year, for OAR.”
She commutes to the OAR office from a Washington, DC, neighborhood, after growing up in Chicago, living overseas in Tokyo, and graduating from high school in Madison, Indiana.
“OAR’s applied research focus makes it unique, and being a very ‘here and now’ person, I truly appreciate that the mission involves the day-to-day pragmatics of people affected by autism. Working as a RUN coordinator for an organization that has an incredible mission is a dream job combination for me, so I am so excited to be lucky enough to work here.”
Chelsea Steed
This is the short story of how Steed came to OAR: “I wanted to work in a role that was aligned with the things I’m passionate about outside of work.”
Here’s the full story: “One of my proudest and most rewarding moments in life was when I convinced my former neighbor in Connecticut, Joanne, to train for a half marathon with me this past March. Though she was a frequent runner, she had never run more than four miles, and I had never run more than five. I set her up with a training program and coached her long-distance from Virginia. To be honest, she trained even harder than I did! When she found out she had family plans over the race date, she signed up for a local half marathon in Connecticut instead and ran it in nasty New England winter conditions. We both finished our respective races in around 2:45! I was SO proud of her.”
Then she happened upon the job description for the RUN coordinator position at OAR. “It was exactly what I’d been doing with Joanne, and I knew immediately that I wanted this job. I get the biggest thrill out of convincing people to set seemingly impossible goals and then coaching and motivating them to smash those goals! People are capable of accomplishing so much more than they dream of.”
She’s already motivated one person in the new position she began on August 30—herself. She finished the Rock ‘N’ Roll Virginia Beach Half Marathon in September as part of the RUN FOR AUTISM staff. “It was my second half marathon, so this time I was training with a goal time in mind—I was hoping to finish around 2:20/2:25, a lofty goal, since my first half marathon time was 2:43. I finished in 2:14:16, smashing my goal,” finishes coach and coachee with a smile.
Steed graduated from Florida State University in 2009 with a bachelor’s degree in business management. She is looking forward to being closer to the OAR offices when she moves from Fairfax, Va. to Arlington in November.
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News from the RUN FOR AUTISM
OAR Stars in the Lone Star State
The Chevron Houston Marathon and Aramco Houston Half Marathon define the phrase, “Don’t mess with Texas!” Race day, January 30, will see runners from around the country wrangle streets and lasso accomplishment as they pound the pavement in a full and half marathon. Those runners are in for a unique experience on this fast, flat, scenic and single-loop course, which has been ranked as the "fastest winter marathon" and "second fastest marathon overall" by Ultimate Guide to Marathons. The Ultimate Guide has also ranked the marathon as fourth most supported marathon because of the more than 200,000 spectators who come out for the event.
With a new marathon lottery entry system and many other new ways to get into the races, OAR has already stacked up a team of almost 40 runners and they have a lot to be proud of. Not only are they the lucky ones who got into the race, they are also committed to training for and running a half or full marathon, while fundraising for research that helps families, teachers, and communities who are affected by autism.
If you’d like to join this motivated team, there are still openings! Find out how to join the OAR Houston full and half marathon team by contacting RUN Coordinator Lindsey Cook at lcook@reasearchautism.org.
OAR already started in on the fun by participating in the annual Kickoff Party on Thursday, September 16. Along with other Houston Marathon charity partners, local food and beverage vendors, and other local businesses, partygoers enjoyed food and music for free in Memorial Park. Two fantastic OAR runners, Noel Luna and Paul Morin, staffed the OAR/RUN FOR AUTISM table this year, helping OAR become a thread in the Houston Marathon fabric.
OAR’s participation in Chevron Houston Marathon and Aramco Half Marathon includes a booth at the two-day race expo, which is held at the George R. Brown Convention Center (GRB) in downtown Houston. Come visit the OAR table on Friday, January 28, from 11 a.m. to 6 p.m., or Saturday, January 29, from 9 a.m. to 6 p.m. OAR will also have a tent in the Finish Line Charity Village Area, celebrating with each and every one of the RUN FOR AUTISM runners and their friends, family, and fans. We are sure that these runners will earn their famous Houston breakfast burritos this year!
For more information on the Houston marathons 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.
New RUN Fundraising Guide Coming Your Way in October
OAR is excited to announce the upcoming release of a revised Fundraising Guide for our RUN FOR AUTISM team. The guide includes a timeline, a checklist, a section on how to utilize social media tools, and a section on fun fundraising event ideas.
“We want to help our runners keep the fundraising process simple, personal, and fun,” says RUN Coordinator Lindsey Cook. “If you are excited about your race and your fundraising efforts, your network will be excited too, and they’ll support you.”
The new guide will be available for download on the RUN FOR AUTISM Web site in October. You can direct current fundraising questions to the RUN staff at run@researchautism.org or 703-243-9710.
Fundraising and Fun Unite RUN Teams in Philadelphia and Virginia Beach
It’s been a busy September for OAR and the RUN FOR AUTISM staff. On September 5, OAR’s RUN FOR AUTISM – Virginia Beach Team of 14 runners took on a sunny 13.1 miles through neighborhoods, a military base, and finally the famous boardwalk. Three weeks later in the City of Brotherly Love, OAR’s first RUN FOR AUTISM-Philadelphia Team ran the ever-popular ING Rock ‘n’ Roll Philadelphia Half Marathon. Collectively raising over $15,000, the runners from the two teams represented OAR with pride, excited to be raising funds and awareness for autism research.
In Virginia Beach, race weekend began with a little rain and wind as Hurricane Earl rolled into town to crash the Labor Day Weekend event. But that didn’t stop the runners and community from coming out to the Health & Fitness Expo in droves. Race morning dawned, offering up cool weather and not a drop of precipitation for the flat course.
Deciding “to turn our sweat and blisters into something really meaningful,” Aaron and Kathy Rigdon decided to run the 13.1 miles in honor of their son, Dexter, who was diagnosed with autism two years ago. Unfortunately, Kathy got injured just before the race, but still came out to cheer on her husband. They look forward to running the race together next year. Becky Hobbs also decided to run and raise money for applied research. A Virginia Beach local, she enjoyed a fantastic race, crossing the finish line all smiles and leaving the tourists behind.
Philadelphia saw an equally fantastic race with a few more hills and little less sand. Formally known as the “ING Philadelphia Distance Run,” this popular race with the Philadelphia community continued its success in 2010 with 19,000 people registering for the September 19 event. The RUN FOR AUTISM team recruited runners both from the Philadelphia area as well as around the country. Local resident Deanna Segrave-Daly didn’t have to drive too far for the race, but her fundraising was “out of this world,” raising over $4,500. You can read more about her, her daughter, Mia, and Team Mia in our RUN profile.
Chris and Theresa Waddell continued their Rock ‘n’ Roll race series tour. Veteran runners and fundraisers with OAR, the couple ran in honor of their sons, Will and Paul. Together, they raised over $2,300. Julie Verhagen, whose son was recently diagnosed with Asperger Syndrome, and Stephanie Kipper also rocked the Rock ‘n’ Roll race, raising $1,300 and $650 respectively.
OAR congratulates and thanks its Virginia Beach and Philadelphia half marathoners for their efforts for autism research and OAR. To be part of next year’s teams for these races or for more information on the RUN FOR AUTISM program, please go to www.researchautism.org or email run@researchautism.org.
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RUN PROFILE
Why I Run
Autism is More than a Diagnosis. It’s a Child and a Family and a Community
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| Deanna Segrave-Daly recently ran her first half-marathon for OAR in Philadelphia on September 19, in honor of her daughter, Mia, 3, who was diagnosed with an autism spectrum disorder in January. |
For Deanna Segrave-Daly and her husband, Jim, the best part of joining the RUN FOR AUTISM was the opportunity to “put a face to autism,” as they wrote in a fundraising letter, to let people know that autism isn’t just a diagnosis, it’s a child and her parents and the extended family and friends who support them.
“Before autism, I was that person who looked on in disdain at a child ‘misbehaving’ in public. Now, I look on with sympathy and support. I also don't assume anything when I first meet a child or family - you never know the whole story,” explains Deanna. “Being a parent of a kid with autism has made me (I hope) less judgmental and definitely beyond anything, forced me to appreciate the small things and marvel how children learn and are some of the hardest workers you'll ever know. It makes me want to do more for many super mamas and papas who have so many more struggles daily and need our support and, most of all, acceptance.”
The Chance to Educate and Contribute
When you hear that passion, it’s no surprise that Deanna and her husband have dedicated themselves to raising money for OAR through the RUN FOR AUTISM program. Deanna recently ran her first half-marathon for OAR in Philadelphia on September 19, in honor of their daughter, Mia, 3, who was diagnosed with an autism spectrum disorder in January.
They were lucky, Deanna says, that Early Intervention of Delaware County, where they live in Pennsylvania, took Mia for therapy when she was 19 months old (even before her official diagnosis). That experience of having occupational and speech therapists and a special instructor to work with Mia’s sensory and social issues, gave them hope as they saw Mia progress and also learned how they could help her at home.
“I'm continually amazed at what Mia is accomplishing each day,” says Deanna. “Just yesterday, she laid totally still during an EEG exam which involved sticky glue and 20+ electrodes stuck to her head and laying still for 20 minutes. Two months ago, she wouldn't have done that! When Mia was younger, before she got into this program, I often just thought, let's get through this hour (let alone an entire day), but she has grown so much in these past few months with lots of therapy, love, and social interactions, I'm just starting to feel hopeful for her future and wonder with joy, rather than fear/exhaustion, what tomorrow will bring.”
“Having experienced firsthand the great benefit of interventions based on applied research, we felt it was important to do two things. First, we want to educate family and friends about autism spectrum disorders. We strongly believe that awareness leads to compassion, which can lead to acceptance. Our second goal is to raise funds for OAR, which applies research to the challenges of living with autism,” wrote Jim and Deanna in the first of a series of fundraising letters. To date, the couple has raised more than $4,000, a number which keeps rising as more and more friends, family members, and neighbors donate to this very personal cause.
“Not only have we raised over $4,000, I've had old friends reveal they too have a child, niece, close friend dealing with autism, some asking for help/resources and just about everyone asking how they could help beyond donating. Several friends who were already running wanted to join ‘Team Mia' by wearing the OAR teal singlet,” Deanna explains excitedly. “Perfect strangers to me and Jim (friends of friends) have donated. I can't begin to tell you how hopeful this process has made me feel about Mia's and others' future -- if we can just get people talking and learning more about autism, that can lead to acceptance and even more support. The line ‘it takes a village’ may seem cliche but it is so true in our case.”
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Mia Segrave-Daly had a whole team, Team Mia, running in the half-marathon. Besides her mother, Deanna Segrave-Daly (right), Mia's aunt Joan also ran. |
Icing on the Cake
Deanna has been a long-distance runner for several years and the September half-marathon was her fifth. “The first month or so after diagnosis I wasn't running as I was so overwhelmed emotionally while also feeling like I had to spend every waking moment doing something to help Mia. I finally realized I needed to keep doing my early morning runs to keep healthy physically and mentally. So, being the ultimate multi-tasker, I figured if I was already running, I could be doing it to raise awareness about autism. When I discovered OAR's RUN FOR AUTISM program, I was so excited, I signed up immediately for the Philly race through the program.”
As an experienced runner, Deanna has a routine all set, running about 25 miles a week, getting up early to get them in before the day’s routine starts and before it gets too hot in the summer. “I usually add a few more longer distance runs closer to the race and make sure I don't take more than two days off in a row but that's about as intense as I get when it comes to training.”
She also runs with a neighborhood friend one morning a week, talking all the while, which she says “is good cardio training in itself.” And that friend ran with her during the half marathon as did a neighbor and friend who decided to also raise money for OAR since he was already signed up for the race. Jim’s sister drove 10 hours round trip from Massachusetts to also run for Team Mia.
Working with Jim, Deanna crafted a series of letters that began going out in June and they also joined FirstGiving.com, the fundraising site that OAR uses, which Deanna says is “so easy to use.”
“Frankly, the actual donations were the icing on the cake,” Deanna notes. “We really wanted to put a face to autism as well as to let others know we were here to listen, help direct to resources, or share our contacts with any friends, family, coworkers etc. whose lives may have been affected by autism. I continue to be overwhelmed with emotion when I tell you what we've gotten in return.”
The couple also used Facebook, which has been “huge,” according to Deanna, “I've had friends I haven't seen since high school donate and we even have a celebrity donor - Charles Barkley! His wife is a friend of a friend and she donated when she saw our letter on my friend's Facebook page.”
OAR makes fundraising easy. “We just provided the link to the website in our letters and the donations started coming! It now makes me think of other things we can do next time in addition to the fundraising page, like yard sales and other events.” Deanna enthusiastically explains that she intends to keep on multi-tasking by running and raising money for OAR.
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Research Reviews: Improving Work Skills
By Allison Gilmour
This month’s Research Reviews column features two studies from Focus on Autism and Other Developmental Disabilities (Volume 25, Number 3, September 2010) regarding methods for improving work skills. While both studies involve small sample sizes, this does not detract from their potential usefulness. These studies give ideas for future areas of research and ideas for parents and practitioners to help students with autism spectrum disorders (ASD) move toward independence in the work place.
The Effects of Covert Audio Coaching on the Job Performance of Supported Employees
Employment is an important part of life and the transition to adulthood. For people with ASD, finding supportive employment and moving towards independence can be difficult. Many times the supports or job coaches in the workplace end up completing work tasks for the individual with a disability. This article presents one approach to guiding people with ASD to a less supported work experience. Researchers used covert audio coaching (CAC), a small ear bud device attached to a radio, to deliver instructions and praise to employees with disabilities. CAC was studied in the past with counselors in training and students with mixed results. Researchers in this study hypothesized that CAC would work well for people with disabilities. Not only is it small and less stigmatizing than a job coach, it increases individuals’ sense of normalcy and independence.
In this study, three currently employed adults with disabilities used CAC on the job. The participants ranged in age from 22-42 and from 38 to 69 in IQ. All spoke English to some degree. Each employee had participated in supported employment and was not learning a new job task. Job tasks included sweeping, cleaning windows, and stacking crates. The goal was not to see the effect of CAC on learning a new task, but on improving fluency, independence, and accuracy for a currently performed task. The experimental design consisted of baseline, intervention, and follow-up probes.
Each participant’s work task was analyzed into a series of steps. Researchers collected baseline data for three to four times, recording the steps of the task completed correctly and incorrectly as well as the time spent on each task. Researchers also collected data to determine normative rates by observing and timing individuals without disabilities completing the tasks.
Prior to intervention, employees with disabilities performed tasks at a much lower correct percentage rate than the normative data. The rate of completed correct steps per minute was far slower for employees with disabilities than the normative rates. Each participant wore the CAC before intervention so the researchers could determine how well they would accept the device and if simply wearing the CAC affected work performance. It did not.
During intervention, the lead researcher delivered prompting over the CAC. He delivered praise, guidance, and correction statements to each participant from at least 15 feet away out of view from the participant. Following intervention, researchers collected data on participant work performance.
While this study has limitations, such as the small sample size, it does present interesting findings. While wearing CAC, accuracy improved for each participant. Following intervention, participants continued to complete work at high levels of accuracy. Fluency improved but still did not reach the rate of employees without disabilities. This study suggests that CAC is helpful in improving existing work skills.
Bennett, K., Brady, M.P., Scott, J., Dukes, C., & Frain, M. (2010). The effects of covert audio coaching on the job performance of supported employees. Focus on Autism and Other Developmental Disabilities, 25(3), 173-185.
Community-Based Vocational Instruction Using Videotaped Modeling for Young Adults With Autism Spectrum Disorders Performing in Air-Inflated Mascots
Employment is identified as providing an increased sense of happiness and self-worth in individuals with disabilities. Unfortunately, deficits in social interaction can make finding and keeping employment especially difficult for people with ASD. One study found that 78 percent of people with ASD were unemployed.
In this study, researchers identified a work task involving social skills, working as an air-inflated mascot within a store, that also had attractive components for people with ASD. Working as a mascot was identified as an appropriate work task for people with ASD because it required simple, nonverbal skills. Also, the costume shielded individuals from sensory concerns as the costume’s internal fan provides white noise and the costume decreased lighting concerns.
Researchers trained individuals using video modeling (VM) and assessed work accuracy and generalization after training. VM has been used in past studies to help individuals with ASD with living skills, social skills, and communication skills but not very often to teach vocational skills. VM works particularly well with individuals with ASD as it works with visual strengths.
The study participants consisted of three young adults with ASD with cognitive and adaptive functioning ranging from 75 to 104. None of the participants were currently employed or had work experience beyond brief training and supported employment. Researchers set out to determine if VM is an effective means of training individuals with ASD for vocational tasks. The experiment was designed collecting data on baseline, training, follow up, and generalization.
According to the mascot company, employees in the mascot costumes need to engage in multiple target skills, such as waves, handshakes, or jumping, at least 30 percent of the time. Researchers used 30 percent as the behavior criterion. In 15-second intervals, researchers recorded the number of times a participant engaged in multiple target skills. The number of intervals within one minute in which the participant did use multiple target skills was divided by four to calculate the dependent variable. Inter-observer agreement for target behavior was 90 percent.
During baseline, participants wore the costume in a large retail store, were told they would be evaluated on social interactions, and told to “do whatever you’d like.” None of the participants reached the criterion of 30 percent during baseline. Participants were then shown video of someone wearing the mascot costume and interacting with customers. The VM consisted of a scripted section, explicitly showing behaviors and how to use the costume, and a naturalistic section that showed an employee in costume interacting with customers. Each participant viewed the VM twice.
After VM, participants again wore the costume in a large retail store, were told they would be evaluated on social interactions, and told to “do whatever you’d like.” Each participant averaged skills above the minimum criterion. One month later, researchers evaluated maintenance of desired behaviors. Two of the three participants retained the skills above the criterion level. Researchers evaluated generalization three months later with participants working in a different costume in a new location. All of the participants exhibited the skills above criterion level. Participants also completed a survey of satisfaction with the job. All participants rated the job and work experience as positive.
The results of this study show that VM can be used to teach people with ASD new work skills though the small number of participants limits the extent to which the findings may generalize. Participants also only worked for small amounts of time making it hard to determine if results would generalize to a full workday. This study presents a possible job that may appeal to individuals with ASD. The researchers point out that participants showed skill acquisition and job success without prompting or praise. VM could be a cost-effective and socially normative method for employers to train individuals with ASD.
Allen, K.D., Wallace, D.P., Greene, D.J., Bowen, S.L., & Burke, R.V. (2010). Community-based vocational instruction using videotaped modeling for young adults with autism spectrum disorders performing in air-inflated mascots. Focus on Autism and Other Developmental Disabilities, 25(3), 186-192.
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HOW TO…Advocate
By Patricia Wright, PhD, MPH, and Denise Rozell
Using Advocacy as a Tool to Support People with Autism
Patricia Wright, PhD, MPH, is the national director, autism services at Easter Seals and Denise Rozell is the assistant vice president, state government relations for Easter Seals. Dr. Wright, who has been a member of OAR’s Scientific Council for one year, will be one of the speakers at next month’s OAR conference.
Individuals with autism require effective services and supports to achieve the highest quality of life. While a strong body of research dictates what leads to positive outcomes for individuals with autism, those effective services and positive outcomes are not currently available for all individuals with autism. Advocacy by individuals with autism, their families and service providers at both the individual and the state/federal policy level is one way to ensure that quality services and supports are available for everyone who can benefit from them.
Advocacy for the individual occurs from the moment of receiving a diagnosis. Families strive to have their children receive quality services. Service providers advocate for quality programming for the individuals they serve. Quality of life indicators such as role in family, friendships, health, shelter, education, and community activity are measured, and individuals and their support networks advocate for an individual with autism to achieve higher levels of quality. Individual growth is the measure of success for this advocacy.
Advocacy at the national or local policy level is equally as important, but often this type of advocacy is underutilized. State/federal advocacy influences decision-making at the systems level to create positive change at a macro level. Policy advocacy spurs more widespread benefit across the population than advocacy at the individual level. This upstream advocacy ensures that all individuals have access to effective services and supports by legally requiring funding, service models, and evaluation practices. The Individuals with Disabilities Education Act, recent state legislation regarding autism insurance coverage, and increased Medicaid funding are all products of effective advocacy that lead to positive outcomes for the entire community of individuals with autism. But how do we engage in this work? What can the individual do to engage in these policy changes that are pivotal in providing access to effective services and supports?
1. Communicate with Your Legislators: Elected officials really do want to hear from their constituents. Some guidelines to follow include: a) identify yourself and your geographical location; b) state the purpose of your letter, call, or e-mail; c) be accurate and concise (e.g. name specific legislation on which you are asking for their support) and be sure to fill in details (briefly) as they are not autism experts – you are! Federal legislators can be located at www.house.gov or www.senate.gov; state legislatures can be located at your state’s legislative website (http://multistate.com/statelegislaturelinks.html provides links).
2. Share your facts and your stories: Policymakers and their staff appreciate data. Quantitative data regarding cost savings or data about outcomes for particular interventions are a great tool to motivate change, particularly if summarized in layperson’s language. Policymakers also want to hear your data related to a personal story, preferably from one of their constituents. Ideally, this story should be told directly by the individual or a family member, but you can also bring letters, photographs, or even a short video that best illustrates your perspective.
3. Monitor Ongoing Autism Legislation: Several online resources track autism legislation. Become familiar with the following legislative resources:
a. National Conference of State Legislators (www.ncsl.org/default.aspx?tabid=14109)
b. Autism Society of America (www.autism-society.org/site/PageServer?pagename=vote4autism_federallegislationpage)
c. Autism Speaks/Autism Votes (www.autismvotes.org/site/c.frKNI3PCImE/b.3909853/k.BE44/Home.htm)
d. Easter Seals (www.easterseals.com/site/PageServer?pagename=ntlc8_autism_state_profiles)
4. Join Coalitions: An effective coalition is agroup of organizations or individuals that has a powerful collective voice that you can often leverage to achieve results more significant than any single organization can achieve alone. A coalition also allows smaller organizations to quickly access information and expertise and expand their reach to a greater number of individuals. Before joining a coalition, be sure to ensure that their mission and goals are compatible with yours, and be comfortable with how decisions get made and how the coalition speaks on your behalf. Coalitions are particularly effective when diverse interest groups can join together to successfully achieve a particular goal. Policymakers are impressed with that collaboration.
Only through state/federal advocacy can we ensure that all individuals with autism have equal access to quality services and supports. The needs of the individuals whom we serve are often quite obvious to us. But widespread implementation of change must occur at the policy level. Individuals with autism, family members, and service providers all have a role to play in policy advocacy. It is not enough to advocate for only those whom we see or know directly, we have an obligation to advocate for the autism community as a whole.
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Science, Fads, and Behavior Analysis
By Thomas Zane, Ph.D., BCBA-D, Institute for Behavioral Studies at The Van Loan School of Graduate and Professional Studies, Endicott College, Beverly, Massachusetts
A Horse of a Different Color: A Review of the Effectiveness of Hippotherapy
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.
Hippotherapy (“hippo” means “horse” in Greek), sometimes also called equine-assisted therapy or therapeutic riding, involves the use of horses to provide various therapies to persons who display a number of challenging conditions (American Hippotherapy Association; AHA). According to its Web site, the horse is used because of the “multidimensional movement” of this animal, which provides “sensory input through movement which is variable, rhythmic, and repetitive.” The movement of the horse then requires reactions on the part of the rider that mimic movements of the pelvis while walking. Such movement is claimed to be beneficial to the rider, with the speculation that mobility, posture, and balance can be enhanced (e.g., Bliss, 1997).
Smith (2009) noted that only registered occupational, physical, and speech therapists incorporate horses into treatment, using the horse as a sensory “input,” much like other sensory objects and activities. For example, physical therapists use hippotherapy, in conjunction with other motor tasks planned by the physical therapist, to facilitate improved gross motor skills, such as sitting and walking. Some occupational therapists assert that using hippotherapy along with “standard intervention strategies” from the field of occupational therapy can focus improvement on fine motor control and other skills, such as daily living skills and sensory integration. Speech-language pathologists incorporate the movement of the horse to stimulate and use the “physiologic systems” that are supposedly related to speech and language. Note that in all three of these professions, there is recognition that therapies in addition to the horse are used simultaneously. Additional psychosocial benefits are suggested as well, such as improved self-esteem, self-image, and more adept interpersonal relationships (Bliss, 1997).
Therapeutic use of the horse for persons with disabilities is quite popular. Suhfras (1996) reported that there were more than 500 accredited riding centers serving more than 25,000 patients nationally. Currently, according to the North American Riding for the Handicapped Association (NARH), there are over 3,500 certified instructors, 800 accredited riding centers worldwide, and over 42,000 participating children and adults.
There does not seem to be a standard protocol for administering hippotherapy. For example, Froeschle (2009) and Christian (2005) failed to delineate their procedures for using the horse in therapy. In the published case studies, quite a variety of approaches are described. One example was Bliss (1997), who described a weekly therapeutic riding session. Persons with significant physical (e.g., uncontrolled epilepsy, serious scoliosis) and mental (e.g., severe mental retardation) challenges were disallowed from participating. Riding helmets and a physician’s permission were required. The activities during the sessions included becoming familiar with the horse, learning how to mount and dismount, feeding, grooming, and riding. Depending upon the particular needs displayed by a rider, the therapist might include other sorts of activities while on the horse.
The Question of Effectiveness
From the perspective of evidenced-based practice, the question that naturally arises is whether there is evidence that hippotherapy is effective in causing any positive, measurable change in some aspect of functioning. Electronic databases were searched for research articles on experimental research testing the effectiveness of hippotherapy. The results showed numerous publications and testimonials describing the therapy, but no well-designed experiments on its effect. In contrast, many authors admitted the lack of experimental assessments of its benefit (e.g., Bliss, 1997; Smith, 2009).
At the AHA Web site, there were ten abstracts of published “research” articles testing some aspect of hippotherapy. One (Benda, McGibbon, & Grant, 2003) involved a random assignment design to test the difference between hippotherapy and sitting on a stationary barrel on muscle activity in 15 children diagnosed with spastic cerebral palsy. The results showed statistically significant changes in the subjects in the hippotherapy group. Seven of the remaining nine articles used single-group convenient samples (not allowing a causal relationship to be determined), another article was a survey, and the tenth article was simply a description of hippotherapy.
At another link on the AHA Web site, six “research” articles were listed, from the journal Hippotherapy. Casady (2003) did not present the results of an actual experimental study; instead, she called for more research into the effectiveness of hippotherapy using a variety of research designs with adequate internal and external validity. Another article by Casady (2004a) was not a research study testing hippotherapy in a controlled way; instead, she described the use of case studies when testing the effectiveness of hippotherapy. She accurately described the process of case studies, but later admitted “…because there is no experimental control, conclusions about the effectiveness of an intervention unfortunately may be viewed as mere presumptions.”
Later, she discussed the process to be used in deciding upon a problem to research, defining it clearly, and generating hypotheses to test (2004b). She (2005) described the threats to internal validity that must be minimized to increase confidence of a causal relationship between independent and dependent variables in another article (2005) and summarized the findings presented at the Twelfth International Congress of Therapeutic Riding in Brazil in August in yet another article on the site (2006). Case studies were the most often used design, and she did not present any definitive research findings in support or in contrast to the effectiveness of therapeutic riding.
Last, Casady (2007) briefly described single subject research, explaining the basic procedure, terminology, and how to use something called “single subject group designs.” She did not mention the traditional within-subjects designs of reversal, multiple baseline, or alternating treatments, nor did she present any quantifiable data from any single-subject design testing the effectiveness of hippotherapy. However, she did mention that the journal AHA Hippotherapy has published studies using single subject designs over the past two years.
In sum, at the AHA Web site, only one of the 16 papers purportedly showing research results actually could be considered an actual experimental test –– with some control over internal and external validity –– of the effectiveness of hippotherapy, and the focus of that study was on motor ability.
Bass, Duchowny, and Liabre (2009) studied the effect of therapeutic horseback riding on the improvement of social skills in children with autism spectrum disorders (ASD). Children were randomly assigned to either a 12-week session of horseback riding or a control group receiving no horse therapy. The dependent measures focused on social skills, sensory seeking, and social motivation. The authors concluded at the end of the study that these children did in fact show improved social skills, better sensory seeking and sensitivity, and more social motivation. However, the authors used survey instruments as the means for collecting data on the dependent measurements, so there is no confidence in the reliability of these measures (e.g., Fraenkel & Wallen, 2009). Thus, this study’s results and conclusions must be viewed with skepticism.
In sum, it seems that the level of quality research that would allow us to conclude that hippotherapy is an effective strategy for persons with developmental disabilities does not exist at this time. Many of the published papers are either simply descriptive in nature or case studies that do not allow any confidence in a causal relationship between hippotherapy and improvement in the participants. Many proponents of hippotherapy seem sensitive to the need for conducting valid, well-designed experiments that hopefully will show that hippotherapeutic techniques can effect change in consumers. As Casady rightly points out, single subject research – using well established within-subjects designs, such as multiple baseline – will hopefully be used to begin to generate a solid research base to empirically determine the effects, if any, of this therapeutic approach. However, with the current state of the evidence, hippotherapy should not be considered an intervention that has a solid research base showing effectiveness and thus should not be recommended for use on that basis.
References
American Hippotherapy Association (2010). Retrieved July 6, 2010 at www.americanhippotherapyassociation.org.
Arnold, J.C. (1995). Therapy dogs and the dissociative patient: Preliminary observations. Dissociation, 8(4), 247-252.
Bass, M., Duchowny, C., & Liabre, M. (2009). The effect of therapeutic horseback riding on social functioning in children with autism. Journal of Autism and Developmental Disorders, 39(9), 1261-1267.
Benda, W., McGibbon, N.H., & Grant, K. L. (2003). Improvements in muscle symmetry in children with cerebral palsy after equine-assisted therapy (hippotherapy). Journal of Alternative and Complementary Medicine, 9(6), 817-825.
Bliss, B. (1997). Therapeutic horseback riding? RN 60.10: 69+ Academic OneFile. Web. 16 July 2010.
Casady, R. (2003). Building the evidence for hippotherapy. Hippotherapy, 12(3), 8-9.
Casady, R.L. (2004a). Step up to the plate. AHA Research Guides, retrieved May 17, 2010 at www.americanhippotherapyassociation.org/aha_about_hippo_research.htm.
Casady, R.L. (2004b).Research problems, questions, and hypothese. AHA Research Guides, retrieved May 17, 2010 at www.americanhippotherapyassociation.org/aha_about_hippo_research.htm.
Casady, R. (2005). Internal validity. AHA Research Guides, retrieved May 17, 2010 at www.americanhippotherapyassociation.org/aha_about_hippo_research.htm.
Casady, R.L. (2006). Report: XII International congress of therapeutic riding. AHA Research Guides, retrieved May 17, 2010 at www.americanhippotherapyassociation.org/aha_about_hippo_research.htm.
Casady, R.L. (2007). Research how-to series: Single-subject research. AHA Research Guides, retrieved May 17, 2010 at www.americanhippotherapyassociation.org/aha_about_hippo_research.htm.
Christian, J. E. (2005). All creatures great and small: Utilizing equine-assisted therapy to treat eating disorders. Journal of Psychology and Christianity, 24, 65-67.
Fraenkel, J. R., & Wallen, N. E. (2009). How to design and evaluate research in education, seventh edition. New York: McGraw-Hill.
Froeschle, J. (2009). Empowering abused women through equine assisted career therapy. Journal of Creativity in Mental Health, 4, 181-190.
Macaley, B.L., & Gutierrez, K.M. (2004). The effectiveness of hihppotherapy for children with language-learning disabilities. Communication Disorders Quarterly, 25, 205-217.
North American Riding for the Handicapped Association. Retrieved July 17, 2010 at www.narha.org/
Reichert, E. (1994). Play and animal-assisted therapy: A group-treatment model for sexually abused girls ages 9-13. Family Therapy, 21, 55-62.
Smith, B. (2009). Hippotherapy therapy: Autism teaching strategies for students with autism. Retrieved July 19, 2010 at www.brighthub.com/education/special/articles/19121.aspx.
Suhfras, G. (1996). Horses that heal: Therapeutic riding success stories. Horse Illustrated, July, p. 88.
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