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January 2010 |
Chairman's MessageStellar Past Performance, Check; Great Expectations, Check
Once a year, the OAR staff asks me to write an article about OAR and the year ahead. After I used quotes from Vince Lombardi and Sun Tzu in the article last year, I wasn’t sure I’d receive another invitation. With apologies to Vince and Sun, I’ll refrain from using quotes this year. Before I talk about the future, let me look back and tell you a little about the past 12 months. Every charity I know about, including OAR, was concerned about its prospects for 2009 at the beginning of last year. Would revenues meet projections? Would we be able to meet our research-funding goal? How bad will it get in the current economy? Despite my confidence in our plan, Board, and staff, none of us knew for sure how things would go. We reviewed our priorities, tightened our belts a bit [Read Mike Maloney’s message in last July’s newsletter - www.researchautism.org/resources/newsletters/2009/July_2009.asp], and pressed forward with renewed effort, working and hoping for the best. I am pleased to report that OAR held its own. We finished our fiscal year, which ended June 30, with just $30,000 separating us from the prior year’s revenues. On the expense side, the belt-tightening measures worked, resulting in an end-of-year surplus of $60,000, which we immediately carried forward to fund research studies we would select in October [www.researchautism.org/news/pressreleases/PR112009.asp]. So, the fiscal picture was good on both ends. It continued that same way through the end of the 2009. As far as mission-related programs go, I don’t know if OAR has ever had a year like 2009. Think about these accomplishments. We:
Clearly, the OAR staff team didn’t miss a step this past year. Our success in maintaining our revenues and sustaining our programs during this challenging time gives me confidence that we can push the envelope and return to our growth plan in 2010, despite the continuing struggles of the economy. I am excited about our new RUN FOR AUTISM team and what it will accomplish with Lily Matusiak in the lead, and I am eager to hear the feedback from parents and service members with children on the autism spectrum when they begin receiving copies of the new Guide for Military Families next month. After that, we’ll be conducting our annual scholarship program and research competition and looking to publish a revised and updated edition of our first guidebook, A Parent’s Guide to Research, which in itself represents another OAR milestone. Our planning numbers are encouraging as well. Thanks to the generosity and efforts of three Board members and additional donations from the community, we will be able to increase this year’s number of scholarship awards from seven to 11 ($33,000 total scholarship dollars). And, on the research side, we have set aside $300,000, enough to fund 10 new research studies, for the 2010 Applied Research Competition. As we begin this new year, I have challenged OAR’s Board to do even more in 2010. I expect us to move toward the $2 million mark in total revenues, do an outstanding job managing our current programs, set new records in total runners and money raised through our RUN FOR AUTISM program, and develop creative new programs and resources for the community like our military families’ project this past year. It will take renewed energy, commitment, financial support, and leadership from my fellow Board members and an infusion of new blood and ideas from the new Board members we seek. (If interested, contact Mike Maloney, mmaloney@researchautism.org, at OAR). And, it will take another stellar performance by the OAR staff team, friends of OAR, runners, and volunteers. Am I crazy? That’s subject to debate among my friends. Do I expect a lot? Absolutely! Is my vision realistic? It doesn’t matter. Our mission and purpose demand no less, and my OAR Board-staff team has yet to let me down. I can’t wait to write next year’s letter. OAR News
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“This has been the most challenging project we’ve undertaken since we started OAR eight years ago,” says OAR Executive Director Mike Maloney. “It’s the culmination of a year’s effort by a project team centered at OAR, but spread around the world: interns; OAR staff; military family contributors in Japan, Guam, Europe, and the United States; autism professionals including members of OAR’s Scientific Council; and our most reliable community partner, the Southwest Autism Research and Research Center in Phoenix, AZ. My hat’s off to each of our writers, contributors, and reviewers.”. |
Lily Matusiak |
In August, with the major fall events just two months away, OAR received a jolt when RUN FOR AUTISM Director Doug Marocco left unexpectedly for a job opportunity too good to turn down. Rather than hire a new director under that type of pressure, OAR decided to bring on two RUN coordinators, push through the October events, then take up the matter of finding a successor to Marocco. As luck would have it, OAR found its new director within the ranks of its RUN coordinators.
OAR is pleased to announce the promotion of Lily Matusiak, who was hired as one of the RUN FOR AUTISM coordinators in August, to director of the RUN FOR AUTISM program.
“We knew that we had two talented people joining our staff in Lily and Julia Hornaday, who came on board in September,” says OAR Executive Director Mike Maloney. “In the course of our October events in Chicago and here in Washington, DC, Lily showed exceptional leadership ability in addition to the skills and experience we were looking for in our RUN director. She brings new energy, fresh ideas, and a penchant for hard work to our RUN FOR AUTISM program. Look for Lily and her RUN team to take the program to new heights this year.”
Two years ago, OAR set goals for the year of 1,000 runners and $1 million dollars. Last year, with 852 runners, the first goal came into sight. While OAR has averaged $600,000 a year in the same span, the $1 million mark has remained out of reach. In Matusiak, OAR believes it has found the right combination of leader, athlete, and thinker to meet those goals by the end of 2011, if not this year.
After working in Manhattan for the Jewish Outreach Institute as a program officer for two years, Matusiak moved to Silver Spring, MD, last year to be closer to family. She found a new equally rewarding position with OAR. “I was familiar with the RUN FOR AUTISM program from its visibility in other races that I had either participated in or volunteered with. I knew that it was a growing program and I wanted to help take it to the next level, both in the money it raises and the number of race participants. Also, I wanted to work for OAR because of its mission, focusing specifically on research devoted to the day-to-day challenges of those affected by autism.”
A long-time runner and fitness enthusiast, Matusiak has long known the kind of people who make up the core of OAR’s RUN FOR AUTISM program. “I fell in love with the running community, a group of people who can’t wait to wake up early on a Saturday morning to put in their long runs,” notes Matusiak. “My first experience with OAR’s events and our autism runners last fall was incredible. Working for OAR means I have the chance to meet runners and walkers on race weekends throughout the year and honor and celebrate with them as they reach their fundraising and running/walking goals.”
News from the Autism Community
Temple Grandin Tells the Story of Autism Advocate Who “Thinks in Pictures”
On February 6 at 8 p.m. (ET/PT), HBO will premiere an original film based on the inspirational true story of Temple Grandin, starring Claire Danes. Temple Grandin paints a picture of a young woman’s perseverance and determination while struggling with the isolating challenges of autism. Temple is a highly successful doctor of animal sciences, a best-selling author, and an internationally renowned autism advocate.
To support the autism community and celebrate the film, HBO and Barnes & Noble will host a special book signing and discussion with Temple Grandin on Monday, January 25 at 1 p.m. at Barnes & Noble at 150 East 86th St. (at Lexington Ave.) in New York. HBO and Barnes & Noble invite the public -- especially parents, friends and advocates of individuals with autism -- to this free event.
Information related to autism and the HBO film will be displayed in all 775 Barnes & Noble stores and at www.bn.com/templegrandin, including a free, downloadable coloring book that tells Temple’s story through illustrations created by artists with autism. You can download the coloring book through February 17 at www.bn.com/templegrandin and at www.HBO.com.
News from the RUN FOR AUTISM
OAR, the National Marathon, and You: A Natural Fit
An early spring breeze swirls through the cherry blossom buds as the feet of 12,000 runners race along the National Mall. The runners take in DC’s most picturesque places: the National Mall, the Lincoln Memorial, the White House, and the United States Capitol Building. Imagine the scene. Imagine being part of it! If that scene excites you, join the RUN FOR AUTISM team at the SunTrust National Marathon (which includes a marathon, half marathon, and team relay).
When evaluating what races to add in 2010, OAR’s RUN FOR AUTISM staff decided to start at home. “The National Marathon is a perfect fit,” explains RUN Coordinator Julia Hornaday. “It is a sellout race close to home at the very start of spring.” The RUN staff also liked the timing as the March 20th race lends more balance to OAR’s race calendar.
Just as OAR will have runners in the National Marathon for the first time this year, the National Marathon is embarking on a significant first as well, introducing the “Run for a Cause” charity program. “The relationship with the National Marathon has been wonderful thus far,” says Hornaday. “They are just starting their charity program and have been very receptive to the needs of OAR and our runners. They are working hard to grow their charity program just as we are working hard to grow ours,” says Hornaday.
The RUN FOR AUTISM staff is currently building the National Marathon team and you can be part of it, running 26.2 miles or something less. OAR has entries available for the full marathon, half marathon, and team relay. So whether you are looking for a new personal best on the “fastest looped course in the country,” or just want to take in the historic sights of DC, the National Marathon is a great race to add to your running calendar.
If you are interested in joining the RUN FOR AUTISM – Washington, DC team, please contact RUN Coordinator Julia Hornaday via e-mail at run@researchautism.org.
Calling All Runners and Walkers
Join the RUN FOR AUTISM Team in Cleveland
The Rite Aid Cleveland Marathon, Half Marathon & 10K is again welcoming OAR as a charity partner, this time at the Gold level, the highest in the charity program. This sets the stage for OAR’s third RUN FOR AUTISM- Cleveland on Sunday, May 16.
With three races of varying length to choose from, the Cleveland Marathon, Half Marathon & 10K appeals to both runners and walkers alike. Add a relatively flat course and great views of downtown Cleveland’s major landmarks, including the Rock and Roll Hall of Fame and Browns Stadium, and you have an event you don’t want to miss.
The fringe benefit? You can raise money for OAR at the same time you’re enjoying this appealing fitness event. And you can meet OAR staff, who will be on site at the Runners’ Expo on May 14-15 and in the Cleveland Charity Village area near the finish line area on race day to help team members celebrate their accomplishment.
Early reports indicate that last year’s all-star Running for OAR by the Shore team, a composite group of 44 runners and walkers--parents, family members, and teachers from Lear North Elementary School—will return for an encore. Join them and the rest of the OAR team as we set out to break last year’s team records of 71 runners and more than $31,000 raised.
You can register now. If you participate with OAR, you’ll receive a special discounted rate. To access the discount code and to find out more, visit www.researchautism.org/news/run/index.asp.
For more information on this or other opportunities to be part of the RUN FOR AUTISM - Cleveland team, visit www.researchautism.org/news/run/index.asp or contact OAR’s RUN staff at (866) 366-9710 (toll-free) or e-mail: run@researchautism.org.
Research Reviews
By Sandra O’Brien, RN, MSN, CRNP-F, PHCNS, LEND Fellow
From Social Work in Mental Health
The articles in this month’s research reviews are unique in two ways. First, they were written by Sandra O’Brien, a Fellow in the Leadership Education in Neurodevelopmental and Related Disabilities (LEND) Program at Children’s National Medical Center. The goal of the LEND program is to cultivate interdisciplinary approaches and attitudes to dealing with children with disabilities by training future professionals in a variety of disciplinary areas emphasizing leadership in the broader healthcare and service providing system. Ms. O’Brien, a nurse practitioner, is one of two LEND Fellows working with OAR this semester.
Second, all the articles were published in a special autism edition of Social Work in Mental Health (Vol. 8, 2010). All three articles deal with critically important subject matter (healthy sexuality, siblings, and the relationship between health status, problem behavior, and maternal burden) and were written by true experts in their respective fields. In fact, three of the authors, Suzannah Ferraioli, Shana Nichols, and Audrey Blakeley-Smith are all previous OAR grant awardees so their credentials are truly well established.—Peter Gerhardt, Ed.D.
The Impact of Health Problems on Behavior Problems in Adolescents and Adults with Autism Spectrum Disorders: Implications for Maternal Burden
Communication problems may impair an adolescent or adult with an autism spectrum disorder (ASD) from effectively communicating when they are in poor health or, simply, feeling poorly. They may, instead, react to the pain or discomfort by “acting out” behaviorally. While the clinical literature has speculated about a connection between poor physical health and an increase in behavior problems, and anecdotal reports abound, few research studies have been conducted to demonstrate the connection. The authors of this study wanted to explore these issues as well as the effect that behavioral problems and poor health may have on maternal burden (i.e., stress). The researchers hypothesized that the level of behavior problems in individuals in the study would worsen over time if their initial physical health was an issue. Subsequently, the presence of health problems and behavioral problems would then lead to increased maternal burden.
What literature exists supports the basic hypotheses of the study in that physical health is often compromised in adolescents and adults with ASD and that, in general, these individuals have increased difficulty coping with physical illness. Intervention plans based upon applied behavior analysis (ABA), which has been shown to be a highly effective strategy to support behavior change, have rarely accounted for health problems and may, in such cases, be rendered less effective than would be expected. Studies have also shown the secondary impact of poor physical health is most often borne by the mother in the form of additional trips to health care providers and the administration of medications and treatments. Finally, some studies have observed the interrelatedness of poorer health in children and increased maternal burden. A number of studies have demonstrated that mothers of children with ASD experience higher levels of stress and mental health difficulties than mothers of typically developing children or mothers of children with other disabilities.
In this study, the mothers of 406 adolescents or adults with ASD completed several questionnaires to rate the health status and behavior problems of their children and the burden the mothers experienced caring for their children. The researchers obtained information as part of a longitudinal study during which data had been collected every 18 months for the past four years. For this study, researchers compared the data collected at Time 3 (54 months) to data collected at Time 1 (18 months) and Time 4 (72 months). The results indicated that there was an 11.6 percent increase in physical problems and 14.5 percent increase in behavior problems between Time 3 and Time 4, although the majority of individuals had no change in either measure between the two stages. Those with significant behavior problems at Time 3 continued to have such problems at Time 4. Individuals who were younger and/or had intellectual disabilities accounted for the majority of those with behavior challenges. Those with health problems at Time 3 had continued health problems at Time 4 while, overall, those with health problems had a demonstrated increase in behavior challenges over time. Surprisingly, most mothers rated their children’s behavior as good or excellent. There were no differences in the findings between different ethnic groups.
The researchers found that both a child’s poorer health and a child’s increased behavioral problems impact the maternal burden. These findings are helpful in that they confirm other smaller studies of less rigorous design.
Additionally, the researchers found that there may be a direct linkage from health problems to behavior problems to increased maternal burden. This is important in that no previous studies have made such an association. The researchers suggested future studies should further explore these findings and should also examine interventions to address the adolescents’ and adults’ health problems with the hope of decreasing behavior problems and maternal burden.
As a result of the findings, the researchers suggested additional training for health care providers in the diagnosis and care of individuals with ASD aimed at decreasing behavior problems and maternal burden. They also envision adaptation of family psychoeducational programs currently in use for adults with mental illness and the frail elderly for this study’s population. The topics covered should include coping strategies for challenging behaviors, community resources, and the important role health care providers can play in addressing health problems that may underlie behavior problems.
Kring, S. R., Greenberg, J.S, & Seltzer, M.M. (2010). The Impact of Health Problems on Behavior Problems in Adolescents and Adults with Autism Spectrum Disorders: Implications for Maternal Burden. Social Work in Mental Health, 8, Social Work in Mental Health, 8, 54-71.
“I’m Not Sure We’re Ready for This…”: Working with Families towards Facilitating Healthy Sexuality for Individuals with Autism Spectrum Disorders
The transition from childhood to adulthood can be a complex one for the individual with an autism spectrum disorder (ASD). In particular, developing some degree of mastery over the skills and behaviors associated with sexuality is made more complex due to limitations in social comprehension and expression. The researchers designed this two-part study to better understand some of these complexities from the parent’s perspective. In addition, the authors hoped to apply the knowledge gained to the design of a sexuality education curriculum.
According to the literature, individuals with ASD experience difficulties in such sexuality-related areas as understanding dangerous situations, avoiding being targets for exploitation, and a general lack of sexual knowledge. At the start of the study, several parents took part in focus groups. The researchers then transcribed the recorded sessions and collected handwritten notes taken during the meetings. A total of 21 parents attended and all but one were mothers.
Analysis of the qualitative data identified six important themes supporting the foundational research studies. Parents expressed their concerns regarding:
- Healthy relationships
- Fulfilling relationships
- Significance of impairments
- The potential for being the victim of or causing sexual exploitation
- Awareness of school, parents, and community rules
- Insights and education for parents
The second part of the study was a pilot of an eight-week parent-administered sexuality education curriculum. Two groups of five parents each attended the weekly one-hour classes. No clear inclusion criteria were discussed; however, the parents had children between ages ten and fourteen, five boys and five girls, four with autism and six with Asperger syndrome. The first four weeks of the course curriculum covered:
- A general introduction
- Parental hopes and fears
- Goal setting
- Sexual development
- Methods to communicate sexuality-related information with their son or daughter
- How to develop an education plan and who to recruit to supplement the material (health care provider)
The second four weeks addressed specific sexuality topics, such as hygiene, demonstration of affection, boundaries, abuse prevention, and masturbation.
Researchers collected quantitative data by use of a comfort rating scale, and the second of the two groups also answered a question about comfort related to discussing issues related to sexuality with their health care providers. Parents completed questionnaires both before and after the sessions. The authors also collected qualitative data through verbal feedback gathered during the first and last sessions. At the end of the eight weeks, parents developed individualized goals relative to their children and reported being very satisfied with the course, wishing only for additional sessions to address specific sexuality topics. In addition, the comfort rating tool demonstrated a significant increase in comfort levels from before the sessions to after. The authors do note, however, that the class size was very small.
The authors also note other limitations of their study. The study participants were self-selected and the study had no comparison or control group. Although they established learning expectations initially, they did not measure them specifically to determine how closely these were met. Finally, the authors did not measure how well the child progressed in the material or how effective the parent-developed material was in assisting children in understanding sexuality. Overall, the program meets an important need and can aid parents in assisting their adolescent children negotiate one aspect in a difficult developmental transition.
Nichols, S. and Blakeley-Smith, A. (2010) “I’m Not Sure We’re Ready for This…”: Working with Families towards Facilitating Healthy Sexuality for Individuals with Autism Spectrum Disorders. Social Work in Mental Health, 8, 72-91.
The Impact of Autism on Siblings
The longest potential relationship we have with another person is that of our relationship with our sibling(s) and, for some of us, our siblings with autism. In this review of the literature on the impact of autism on siblings, Ferraioli and Harris take a life-cycle approach to understanding this complex relationship, meaning that having a sibling with autism affects individuals differently at different times in their lives.
Overall, the authors report there is a large body of research indicating that the presence of a sibling with autism may have either a positive or neutral effect on the adjustment of the typical sibling. At the same time, there have been some documented negative effects such as behavior problems and an increased risk for depression or anxiety. In general, the ability of a child to successfully adjust “may be moderated by his or her access to social support and by the severity of the sibling’s autism.” (p. 44)
Beginning early on, a sibling’s understanding of autism depends in large part on their level of cognitive development. Children as young as three years of age will realize there is something different about their siblings with autism, though misunderstandings about “why” he or she is different abound. Behavior problems are likely to be extremely noticeable to 3- to 6-year-olds who, at the same time, are unable to understand the causes. Parents play an important role in moderating this relationship, particularly since they are the most salient people in the lives of their preschoolers.
By the time siblings are age 7, they have acquired a better understanding of autism and can discuss the generally accepted constellation of symptoms. Siblings ages 7-11 tend to report positive relationships with their brothers or sisters, but this begins to change over time as older children report less satisfaction with the sibling relationship. This trend, the authors report, may be associated with the widening developmental gap between the siblings, worries about the future, and the development of peer relationships outside of the family.
From adolescence into adulthood, teens begin to recognize the impact of autism on their siblings and on other members of the family. Among the concerns that may take precedence at this time are the long-term impact of autism on their siblings, the potential of having a child with autism themselves, and that they may have to take responsibility for siblings when their parents die. Of particular interest, however, is the tendency of people who grew up with siblings on the spectrum to report that their siblings had influenced their career choice and that they were more likely to prepare for a human services career than were their peers.
In summary, Ferraioli and Harris note that while a small group of siblings do exhibit challenges, the majority of brothers and sisters function well as children, adolescents, and adults. Although being a sibling of a person with autism does have an impact, the impact does not mean the influence is a harmful one.
Ferraioli, S.J. and Harris, S.L. (2010). The Impact of Autism on Siblings. Social Work in Mental Health, 8, 45-53.
Focus on OAR Research
Peer-Mediated Intervention for Elementary School Students with Autism Spectrum Disorders
About the Researchers Audrey Blakeley-Smith, Ph.D. is an assistant professor in the departments of psychiatry and pediatrics at the University of Colorado, Denver. She is a licensed clinical psychologist specializing in developmental disabilities, most specifically autism spectrum disorders (ASD). She received her Ph.D. in clinical psychology in 2005 from the State University of New York at Stony Brook and completed a postdoctoral fellowship with a focus on ASD. Clinical and research interests include the co-occurrence of anxiety symptoms and other mental health conditions in children and adolescents with ASD. Dr. Blakeley-Smith is the first recipient of OAR’s Dr. Edward Carr Memorial Research Grant. Her study is the one that “best reflects Dr. Carr’s research interests and passion to improve the quality of life for those on the spectrum and their families.” Susan Hepburn, Ph.D., is a clinical psychologist and an assistant professor of psychiatry and director of Research at JFK Partners. She oversees a human subject core of over 750 families interested in research participation. Dr. Hepburn is principal investigator or co-principal investigator on 18 current research protocols and has authored 38 peer-reviewed publications. Her research interests include: autism development, outcome, and comorbidity with other conditions, and interventions to promote adaptive coping skills. Dr. Hepburn teaches child development to psychiatrists and early intervention to interns and fellows, facilitates a medical students' ethics discussion group, and as a certified ADOS and ADI-R trainer, oversees training and reliability procedures for clinicians and trainees on autism diagnostic evaluation tools. As a member of the Colorado Autism Task Force, she trains school-based teams in best practices for screening and educational identification, and is developing content on toilet-training and on screening for autism for videos for families, educators, and service providers. |
The focus of Audrey Blakeley-Smith’s and Susan Hepburn’s OAR-funded two-year study is positive social relationships. As the two write in the proposal for the second year of funding, “positive social relationships are considered critical to functioning and well-being for all children (Strain & Hoyson, 2000). Yet, the social deficits of students with autism spectrum disorders (ASD) place them at risk for peer rejection and problem behavior.”
In the first year of their study, they assessed the effectiveness of matching intervention strategies to deficits both in elementary school students with ASD and their peers and assessed and targeted peer attributions. Students with ASD noted improved quality of life and their teachers noted improved social skills while the researchers observed increased social engagement.
However, they write, generalization to peers beyond the small targeted groups was limited. In the second year of the study, Blakeley-Smith, Ph.D., and Hepburn, Ph.D., plan to extend the model “by adding a classroom-wide component in addition to the small-group work with a select cohort of peers. The goals of the peer-mediated intervention are: (a) to increase opportunities for positive interaction between students with ASD and their peers by expanding peer support; (b) to assist peers in reframing attributions of the behavior of students with ASD through psycho-education; (c) to train peers in interaction strategies; and (d) to decrease rejection and problem behavior in selected activities.”
Plans for Study’s Second Year
Blakeley-Smith and Hepburn will return to the same school for the second year of the study with the following aims:
- Provide the cognitive component of the peer-mediated intervention devised in Year 1 to the entire classroom in order to:
- Increase opportunities for positive social interaction between students with ASD and their peers by assessing shared interests and identifying opportunities for interaction.
- Assist peers in reframing negative attributions of socially inappropriate behavior of students with ASD through psycho-education.
- Provide the behavioral component of the peer-mediated intervention devised in Year 2 to a small cohort of selected peers in order to:
- Increase appropriate social interaction between students with ASD and their peers by coaching peers in alternative methods of interaction that are specifically matched to each individual student with ASD and decrease peer rejection
- Increase appropriate social interaction between students with ASD and their peers by coaching students with ASD in the games/activities played by their peers at recess.
- Continue to assess the effectiveness of the manualized intervention on the student with ASD and peers by examining changes in peer interaction via observations in naturalistic settings, peer perceptions, and quality of life using a multiple baseline across participants design.
- Determine if the addition of the classroom-wide intervention results in increased peer interaction and improved outcome (compare results from years 1 and 2).
Outcomes
School personnel are in need of training materials that can be used in the classroom to specifically target social interaction and attitudes toward peers with ASD, while not disclosing the diagnosis of ASD. Study researchers plan to compile a manual for teachers that will offer a number of strategies that are matched to social skill deficits not only on the part of the student with ASD, but also directed to typically developing classmates.
In the future, Blakeley-Smith and Hepburn hope to develop materials to support teacher use of the manual and a DVD for teachers that describes and provides examples of specific intervention strategies.
Resource Feature
By Brenda Smith Myles, Ph.D., Barry G. Grossman, Ph.D., Ruth Aspy, Ph.D., Amy Bixler Coffin, M.S.
Planning a Comprehensive Program for Students with Autism Spectrum Disorders Using Evidence-Based Practices: The Ziggurat Model
Editor’s Note: The word ziggurat has its origins in ancient times. Ziggurats are stepped temple towers, built as religious structures in the major cities of Mesopotamia (now in Iraq) from circa 2200-500 BC. Built in the shape of a pyramid, ziggurats are multi-story structures with a broad ascent winding around the outside, looking much like a series of terraces. The Ziggurat Model discussed in this article is a hierarchical approach to autism intervention, hence, the name.
Using the Ziggurat Model not only transforms a child’s individualized education program (IEP) into a multidimensional document that is useable by all stakeholders, it also meets the rigor required by mandates and movements such as No Child Left Behind, (NCLB), Response to Intervention (RTI), and Statewide Positive Behavior Supports (SWPBS).
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Figure 1. Levels of the Ziggurat Model. |
The premise of the Ziggurat Model is that underlying needs and characteristics related to autism spectrum disorders (ASDs) must be addressed. It is designed to utilize students’ strengths to address true needs or underlying deficits that result in social, emotional, and behavioral concerns. This model embodies the “prevent-teach-reinforce” (Dunlap, Iovannone, Wilson, Kincaid, & Strain, 2010) approach to comprehensive program planning for children and youth with autism spectrum disorders (ASD) and related disabilities. The Ziggurat approach centers on a hierarchical system, consisting of five levels that must be addressed for an intervention plan to be comprehensive. (See the graphic above)
Components of the Ziggurat Model
Determining Needs: The Underlying Characteristics Checklist: The Underlying Characteristics Checklist (UCC) is an informal assessment designed to identify ASD characteristics for the purpose of intervention. The UCC is comprised of eight areas: social, restricted patterns of behavior interests and activities, communication, sensory differences, cognitive differences, motor differences, emotional vulnerability, and medical and other biological factors. It may be completed by parents, teachers or other service providers, individually or as a team. This form allows users to see how “autism” impacts the everyday functioning of the individual on the autism spectrum.
Identifying Strengths: The Individual Strengths and Skills Inventory: The Individual Strengths and Skills Inventory (ISSI) accompanies the UCC and parallels its first seven areas. The ISSI goes beyond identifying the student’s special interests and ensures that underlying strengths and skills are incorporated throughout the student’s daily program.
The Intervention Ziggurat: The Intervention Ziggurat, the centerpiece of the model, is comprised of evidenced-based levels structured into a hierarchy:
- Sensory Differences and Biological Needs (c.f., Case-Smith & Arbesman, 2008). The impact of each of the seven sensory systems on the student with ASD is considered in this section of the Ziggurat. In addition, biological considerations, such as medication, allergies, intestinal issues, and sleep needs, are factored in.
- Reinforcement (c.f., Waters, Lerman, & Hovanetz, 2009). Student preferences are identified and integrated into the framework.
- Structure and Visual/Tactile Supports (c.f., Carnahan, Musti-Rao, & Bailey, 2009). Classroom layout, visual schedules, choice boards, and communication systems are examples of interventions that address needs for predictability and challenges with communication.
- Task Demands (c.f., Frederickson, Warren, & Turner, 2005). Task demand interventions are designed to remove obstacles that limit access. A reduction of demands and the addition of supports are required to facilitate success.
- Skills to Teach (c.f., Barry et al., 2003). This Ziggurat area includes the skills, tasks, and/or behaviors in which the student requires direct instruction in order to experience success.
Each of the levels contributes to the effectiveness of the others. If all levels are not addressed, the intervention will not be as effective and skills will not develop.
The Ziggurat Worksheet guides the development of a comprehensive intervention plan and is based on underlying needs from the UCC and strengths from the ISSI. This provides a safeguard from developing a plan that addresses only surface issues. The Ziggurat Worksheet promotes collaboration by helping parents and professionals to understand their part in the larger intervention picture.
Case Study for Michael
A case example of Michael, a 16-year-old sophomore diagnosed with Asperger Syndrome, can be found on www.texasautism/CaseExample.html. This website contains Michael’s Underlying Characteristics Checklist, Individual Strengths and Skills Inventory, and Ziggurat Worksheet. Implementation of the Ziggurat Model resulted in (a) increased time in the general education setting, (b) greater access to the general education curriculum, (c) increased participation with peers and teachers, and (d) skill acquisition.
References
Aspy, R., & Grossman, B. G. (2007). The Ziggurat model: A framework for designing comprehensive interventions for individuals with high-functioning autism and Asperger Syndrome. Shawnee Mission, KS: AAPC.
Barry, T. D., Klinger, L.G., Lee, J. M., Palardy, N., Gilmore, T., & Bodin, D. (2003). Examining the effectiveness of an outpatient clinic-based social skills group for high-functioning children with autism. Journal of Autism and Developmental Disorders, 33(6), 685-701.
Carnahan, C., Musti-Rao, S., & Bailey, J. (2009). Promoting active engagement in small group learning experiences for students with autism and significant learning needs. Education and Treatment of Children, 32, 37-61.
Case-Smith, J., & Arbesman, M. (2008). Evidence based review on interventions for autism used in occupational therapy. The American Journal of Occupational Therapy, 62, 416-429.
Dunlap, G., Iovannone, R., Wilson, K. J., Kincaid, D. K., & Strain, P. (2010). Prevent-teach-reinforce: A standardized model of school-based behavior intervention. Journal of Positive Behavior Intervention, 12, 9-22.
Frederickson, N., Warren, L., & Turner, J. (2005). “Circle of friends”: An exploration of impact over time. Educational Psychology in Practice, 21, 197-217.
National Research Council. (2001). Educating children with autism. Washington, DC: National Academy Press.
Waters, M. B., Lerman, D. C., & Hovanetz, A. N. (2009). Separate and combined effects of visual schedules and extinction plus differential reinforcement on problem behavior occasioned by transitions. Journal of Applied Behavior Analysis, 42, 309-313.
Figure 1. Levels of the Ziggurat Model.
Profile
Milestones Holds Out a Lifeline of Information and Assistance to Parents of Children Across the Spectrum
Begun in 2003 by two parents who wanted to share the information and knowledge they had they gained in effective autism intervention, Milestones, an autism support organization located in Cleveland, OH, is today a widely respected nonprofit organization with a staff of five, a conference that attracts hundreds of parents and professionals each year, and a Web site that offers information to a million visitors annually.
To say that this is gratifying to founders Ilana Hoffer Skoff and Mia Buchwald Gelles is an understatement. “We know there are resources out there for the people who know how to find them but so many people don’t know where to start,” says Skoff, who serves as the executive director. “With Milestones, families have a place to go where they can find those resources by calling us or going to our Web site. Whether they need to know about schools, doctors, or therapies, we have everything in one place.”
Filling a Necessary Niche
Created to serve Ohio families as well as those in nearby states, the Cleveland-based organization sponsors an annual conference that features a large exhibit area, a keynote speaker, plenty of networking, and between 20 and 30 workshops where parents and professionals can learn about applied behavior analysis (ABA) and other effective strategies for working with people with ASD.
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A teacher training participant and an ABA instructor role-play a discrete trial intervention. |
Milestones also provides training and education throughout the year. “We created an intensive ABA training program for public school teachers that lasts for a week. The teachers attend workshops and lectures and also work with kids in a classroom set up at the training.” Milestones recruits the children for the classroom as well as the experts who lecture and work with the teachers. “Each teacher is supervised during the week by an ABA instructor,” Skoff explains.
In addition to its conference and Web site, Milestones also offers monthly workshops to parents and other caregivers to learn strategies that they can use at home.
Navigating the Milestones
“Every day, we get calls from parents who are bewildered and have no clue what to do. They have heard a lot of conflicting information and don’t know where to go. We try to give them the information they need so that they feel confident about creating a plan for their children and families.
“A mother called us one day after she had been placed on waiting lists for schools and home programs but no immediate help. After she talked to us, she decided to come to our conference with her husband and her mother. That conference gave her a way to start on what she needed to do. She participated in three hands-on sessions about ABA techniques and felt that now she knew what she needed to do to start a home program and where to find consultants who could help her.
“That,” Skoff says emphatically, “is exactly what we want to do—empower parents so they can become advocates for their children and do it with support and direction. That mother did find a consultant to help her and her child participated in our teacher training program. She still contacts us for assistance occasionally.”
Milestones has begun to look more closely at what it can do for adults with autism and their families. “In the past year, we created an adult services committee and brought in Randy Lewis [senior vice president of distribution and logistics at Walgreen’s who has set up a program to hire disabled individuals] to talk about hiring individuals with disabilities. We want to build on our success at providing information to parents by helping them with the transition to adulthood. As a child ages, it becomes even more difficult to navigate the maze of services and programs and figure out what is available and what is best.”
Milestones is also determined to continue the work of demystifying ABA for parents, caregivers, teachers and others. “We want to present ABA as the most effective behavioral strategy/intervention for working with people with autism from childhood through adulthood.” A critical component of that work is to bring ABA out of the home and private school setting into public schools, says Skoff.
Skoff believes that Milestones fills a necessary niche in the autism services arena. “We are a catalyst organization. Where we see gaps, we can raise awareness and bring together individuals and groups to collaborate and fill the gap. Because we’re independent, we can bring all the expertise and experience needed under one umbrella. And because we are small, we can have an idea and act on it quickly without the red tape that larger organizations can get tangled up in.”RUN Profile
Putting the “More” in Marathon
Dr. Lisa Teegarden-Cabay has a doctorate in child psychology. She makes her living working with kids who have behavioral and developmental disorders. She has even had a few patients with Asperger Syndrome. But when her son Logan, now 7 was diagnosed with autism five years ago, Dr. Teegarden-Cabay was absolutely devastated and overwhelmed.
The signs were there. At 18 months, Logan was “super smart,” but not talking much; at birthday parties, he seemed uninterested in the gifts and acted standoffish. But when Logan turned 2, Teegarden-Cabay recalls, “all the pieces came together. It hit me like a ton of bricks.” She remembers sitting at her computer crying, anxious and sad.
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Dr. Lisa Teegarden-Cabay relaxes after completing the Bank of America Chicago Marathon. |
Within a week, she quit her job, visited the local Blue Ridge Autism Center in Roanoke, VA, started Applied Behavior Analysis (ABA) therapy with Logan, and was spending three to six hours a day with people in her home working with her son. All the things she heard about autism in graduate school came to life before her eyes; all the things she never really wanted to study now became fascinating. “While Logan has made tremendous progress and is very bright, he continues to struggle with social skills and emotional regulation. It is absolutely because of research-based and early and intensive intervention that he is doing as well as he is,” she says.
Running Because It Matters
Optimistic, energetic, and pint-sized, Dr. Teegarden-Cabay seems like she was made to run marathons. She started with smaller runs in high school, ran longer distances in graduate school and then graduated to marathons, completing four during her post-doctoral years. When she moved to Roanoke, she kept running, completing three more marathons.
She would claim she runs because she is “not very talented at any other sport,” but the truth is, she just loves it. When she married Ken Cabay, an outgoing engineer who is also a very good runner, Dr. Teegarden-Cabay notes, they ran the Marine Corps Marathon while on their honeymoon. Soon after, she became pregnant with Logan and then, 14 months later, gave birth to Carter, another son.
A few years ago, Teegarden-Cabay heard about OAR through Russ Stockton, one of OAR’s TRI FOR AUTISM runners, and his wife, Beth. She began donating to their fundraising efforts, never having run for charity herself. In 2008, she jumped on board, running the Marine Corps Marathon followed by two marathons (within two weeks of each other) in 2009 – the Bank of America Chicago Marathon and Marine Corps Marathon – for OAR. Her dedication to OAR goes beyond the ordinary. After finishing the frigid Chicago race, she became hypothermic and fell ill soon afterwards, yet still managed to power through the Marine Corps Marathon two weeks later.
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Dr. Lisa Teegarden-Cabay and her husband, Ken Cabay, spent several days in the Washington, DC area participating in the Marine Corps Marathon and OAR's Annual Autism Research & Intervention Conference. |
For Teegarden-Cabay, OAR illustrates the overlap of her personal and professional life. Last year, she and Ken left their sons with doting grandparents to run in the Marine Corps Marathon (she also attended OAR’s annual Applied Autism Research and Intervention Conference while Ken volunteered at the Marathon’s Health and Fitness Expo). Dr. Teegarden-Cabay can’t imagine a better weekend. She can attend the conference, learn more about her field, acquire useful information about helping Logan in the future, and satisfy her love to run--all in the matter of a few short days. She notes, “it isn’t just a job for me…to be able to share our experiences and talk to people, everybody wins.”
She is committed to running the Marine Corps Marathon every year in conjunction with the conference and sums it up this way, “Running with OAR has been so rewarding. It is so much more fun to run a marathon when you care what it’s about. It’s one way that I can express my gratitude for what Peter Gerhardt and all of the OAR staff do to promote research and keep all of us professionals and parents up to date with practical and research-based techniques and therapy.”
Despite her tremendous efforts to promote, fund, and learn about autism research, Dr. Teegarden-Cabay always feels like she should be doing more. She says, “I think moms are always the ones who believe that, if their kids aren’t doing well, they should be doing more. I am so humbled by all the parents, moms especially, who have no background in psychology or behavioral interventions and have done everything to learn and understand autism.”
OAR applauds Dr. Teegarden-Cabay and all the other runners like her—who strive to do more for those with autism and their families. Their efforts help us to do more—more research to help more people with autism, their families, caregivers, and professionals working in the field.
