The OARacle
	The Monthly E-Newsletter of the Organization for Autism Research "Research and Resources That Help Families Today!" www.researchautism.org

October 2004

OAR to Expand Research Program in 2005

Michael Maloney Executive Director

October has become the defining month in OAR’s annual calendar. It closes the year with a rush—the meeting of the Scientific Council and Board of Directors, the completion of the Applied Research Competition, the Applied Autism Research and Intervention Conference, and the national RUN FOR AUTISM—all in a span of four days. While each event is exciting in its own rite, what transpires behind the scenes is what defines OAR’s course of action for the next 12 months. This year, particularly significant is the research plan that OAR has just approved for 2005, truly the most ambitious one yet.

OAR’s Scientific Council (SCOAR) meets in person once a year. This year it had two purposes: (1) Review and discuss OAR’s research programs and make recommendations for program enhancements going forward and (2) Conduct the final review for the annual Applied Research Competition.

When SCOAR met last year, the group immediately agreed that OAR should be clear in its definition of applied research both for consistency and clarity in its emerging research programs. As a starting point for this year’s meeting, SCOAR Chairman, Peter Gerhardt, Ed.D., presented a fine-tuned definition that evolved from last year’s discussions:

Applied research is direct, systematic research in support of individuals and families impacted by an autism spectrum disorder diagnosis and the systems charged with educating these learners across their lifetimes. Applied research addresses issues of practical importance, social significance and results and outcomes with the potential to enhance the quality of life of individual learners. Applied research is not contradictory to and is, in fact, complementary to research into the biomedical, neurological or genetic/cellular basis of autism spectrum disorders.

This approved definition serves as the foundation for all of OAR’s research plans and programs.

The next task for SCOAR was to conduct the final phase of the 2004 Research Competition, which required the review and discussion of 12 proposed research studies in great detail with the goal of identifying the most outstanding as candidates for OAR funding on January 1, 2005. The studies recommended by SCOAR, and subsequently approved for funding by the Board of Directors, are described later in this newsletter. Each study successfully meets the standards set forth by the Scientific Council through OAR’s working definition of applied research.

Committed to maintaining a high standard of excellence in the annual Research Competition, SCOAR followed the review with a serious critique of the phases involved in the just completed research cycle. While satisfied with the quality and scope of proposals received this year, SCOAR recommended that OAR expand its 2005 program to include both one and two-year studies. This enhancement will give researchers the opportunity to expand their pilot studies while at the same time allow OAR the opportunity to fund studies of greater depth and potential significance.

In addition to the multi-year feature, SCOAR made some other changes to the annual research competition, streamlining the review process, making the guidelines and administrative process more stringent, and better clarifying how OAR grant funds may be spent. As a result, the Request for Proposals will now be published in January, three months earlier than the release of previous RFPs. Consequently, key due dates for the study submissions will move back a month. The net effect is that researchers will have more time to develop their pre-proposals in the first phase of the competition, and the reviewers will have an additional month in which to conduct the final phase of the competition.

The latest expansion of OAR’s research program, the Graduate Research Competition, was hailed as a success by Council members, all of whom recommended it be further expanded in the coming year. OAR’s Board acted quickly on that recommendation, approving $15,000 to be awarded to student researchers. This represents an almost 50 percent increase in funds over grants approved earlier this year, and will help finance five grants each at the doctoral ($2,000) level and five at the masters ($1,000) level.

As SCOAR concluded its meeting, it set the following important goals for OAR’s research program in 2005:

1. Identify and fund six to eight new research studies ($180,000 to $320,000 in grants over two years)
2. Identify and fund ten graduate research studies ($15,000 in total grants)
3. Explore the potential for a research partnership to fund a study or studies that bridge applied and biomedical autism research
4. Inform the community of science-based findings and practices through research reports of completed research, the web site resources, The OARacle and the annual Applied Autism Research and Intervention Conference

It also identified areas of research interest for OAR for the next 3-5 years which may be incorporated into the annual research competition or the subject of targeted studies commissioned by OAR. The topics include:.

• Policy analysis regarding the systems that help support people with autism and their families
• Services research—what actually is out there for learners on a state by state basis?
• How best to translate good research into practice?
• Qualitative research on social systems in which persons with autism live, work or play, and
• Social skills and support and effective language and communication interventions

As you can see, SCOAR takes both its advisory role in support of OAR’s mission and its reviews and oversight responsibilities for the annual research competition quite seriously. Similarly, the Board of Directors takes full account of SCOAR’s dedication and expertise when considering SCOAR’s recommendations and making decisions on OAR’s research direction and programs. The end result this year is an ambitious and progressive plan that will guide OAR confidently through next October.

2nd AAR&I Conference Showcases Scientific Council Members and Guest Speakers Panel Discussion: David Celiberti, Ph.D., Joanne Gerenser, Ph.D., Randy Horowitz, M.Ed. This past weekend OAR hosted its second annual Applied Autism Research and Intervention Conference at the Key Bridge Marriott in Arlington, Va. First introduced in 2003 as a biennial event, the positive feedback from first-year conference attendees influenced OAR’s decision to present the conference on a yearly basis. The response this year was equally as enthusiastic. Comprised mainly of parents and educators, conference attendees heard a total of eight 45-minute presentations on Friday, as well as a 45-minute ethics panel discussion; a Q&A session concluded the day. On Saturday, attendees alternated between one and two hour workshop sessions, with the day ending in a panel discussion and a Q&A opportunity. Similar to the 2003 conference, many members of OAR’s Scientific Council contributed their expertise on a variety of topics relating to autism research and policy. Council members returning to present in 2004 included James A. Mulick Ph.D., Brenda Myles, Ph.D., Michael Fabrizio, M.A., B.C.B.A, Peter Gerhardt, Ed.D., Joanne Gerenser, Ph.D., and Suzanne Letso, M.A., B.C.B.A. Ann Wagner, Ph.D, from the National Institute of Mental Health, presented at last year’s conference as the Keynote speaker. Dr. Wagner returned this year as the newest member of the Scientific Council, discussing autism research and other autism initiatives at the NIMH. Three Scientific Council members joined the conference for the first time this year. Michael Powers, Psy.D., opened the conference on Friday, October 29th with a discussion considering how to support families of children with autism through evidenced-based interventions. Also speaking Friday morning was Shahla Alai-Rosales, Ph.D., who spoke about research design. Luke Tsai, M.D. ended Friday with his discussion of Asperger Disorder, focusing on the DSM-IV-TR criteria. These autism experts were joined by several guest speakers, including Katherine Galatas, M.P.H., from the Centers for Disease Control (CDC), who delivered the Keynote address on Friday morning. Ms. Galatas discussed the CDC’s new autism awareness campaign, entitled Learn the Signs, Act Early, an initiative aimed at increasing awareness and action in identifying children at risk for autism across the U.S. Other guest speakers included David Celiberti, Ph.D., B.C.B.A., Randy Horowitz, M.S. Ed., S.A.S., and Richard Kubina, Jr., Ph.D., all of whom presented two-hour workshops on the second day of the conference. Dr. Kubina, who was a 2002 OAR grant recipient, discussed his recently completed research study on fluency instruction for young children with autism. A detailed report on the results of this study will be available in The OARacle and on OAR’s web site in the coming months. To sign up for OAR conference alerts, please click here.

NEWS

Five New Studies Chosen for Funding in 2005

At its annual meeting on October 30, OAR’s Board of Directors approved five new applied autism research studies for funding in 2005. This additional $150,000 in research grants will bring the total of awarded funds to $370,000 since OAR’s first grants in January, 2003.

Recipients of this year’s grants include Kevin Ayres, M.A., Emily Jones, Ph.D., BCBA and Kathleen Feeley, Ph.D, Brenda Smith Myles, Ph.D., Karen Pierce, Ph.D., and Judy Reaven, Ph.D. Each grant winner will receive up to $30,000. OAR selected these proposals from an initial group of 42 pre-proposals received in response to the Request for Proposals (RFP) issued in March. 24 proposals were carried through to the final review, where these five studies were selected as the most outstanding.

Kevin Ayres, M.A., a doctoral student in the Department of Special Education at The University of Georgia, will be conducting a study entitled “Improving Social Skills Using Computer-Based Intervention.” The study will focus on identifying specific social skills that parents, teachers and caregivers deem most important for the student with ASD to work on, and how computer-based intervention can help increase social competence in these areas. Ultimately, the study will result in the development of a Web-based program that can be used by teachers and parents, and can be customized to meet the needs of the individual student.

Emily Jones, Ph.D., BCBA, Assistant Professor of Psychology at Long Island University, and her co-investigator, Kathleen Feeley, Ph.D., BCBA, Assistant Professor of Education at Long Island University, will research “Joint Attention Intervention for Children with Autism.” Joint attention refers to the idea of two people sharing a common focus on an object or event of interest. Previous research in the field has demonstrated the effectiveness of using discrete trial instruction and pivotal response training strategies to teach joint attention skills to children with autism in preschool settings. The current study aims to expand this research by having the parent(s) be the instructor in a home-based setting.

The third study to receive funding in this year’s competition will be conducted by Brenda Smith Myles, Ph.D., Associate Professor of Special Education at the University of Kansas. In her study titled “A Dual Purpose Study: Assessment of Characteristics of Students with Asperger Syndrome and the Evaluation of the Mind Reading Computer Software on the Emotion Recognition Ability of Students with Asperger Syndrome,” Dr. Myles will examine a variety of characteristics of children with Asperger Syndrome, including severity of the disorder, temperament, cognition, and adaptive behavior among other things. The second part of this study will investigate the participants’ ability to learn to recognize emotions using a computer software program. This research will help determine if computer-based training is feasible for teaching students with Asperger Syndrome.

OAR’s fourth funded study, to be carried out by Karen Pierce, Ph.D., and her co-investigator Eric Courchesne, Ph.D., both of the Department of Neurosciences at the University of California, San Diego, is titled “Early Identification of Autism: Warning Signs from Brain and Behavior.” The goal of this three-year study is to develop a procedure for identifying infants at risk for autism by the one-year well-baby check-up using a combination of behavioral and brain growth measures. The researchers expect to find significant differences between at-risk infants and their typical peers. This study could help physicians and other professionals identify children who are at risk for autism at an early age, and thus improve early intervention efforts. OAR’s grant will support a portion of the first year’s research.

The final study to be awarded a grant in OAR’s 2004 research competition will be headed by Judy Reaven, Ph.D. and her co-investigator, Susan Hepburn, Ph.D., at the University of Colorado Health Sciences Center. Titled “Family-Focused Cognitive-Behavioral Intervention for Anxiety Symptoms in Children with High-Functioning Autism or Asperger Syndrome,” this study will assess the effectiveness of psychosocial interventions in reducing anxiety symptoms for children with ASD when used in a family-centered setting. Previous research has primarily focused on co-occurrence of anxiety symptoms and ASD, with little attention given to treatment. The researchers expect to complete a set of treatment manuals describing this family-focused intervention that can then be used in future evaluations of the treatment.

In the coming months, OAR will feature more in-depth articles about each of these five studies as the research commences. To see an abstract of each study, click here.

RESEARCH ARTICLE

Community Based Behavioral Programming for Individuals with Autism: The Drive
Toward Inclusion and the Challenge of Making it Work

Russell J. Kormann, Ph.D.

Inclusion. Just mention this one word in the field of autism and developmental disabilities (DD) and battle lines are almost immediately drawn in both the educational and community service arenas. When discussing the development of programming for children and adults with autism and other developmental disabilities who coincidentally present with serious behavioral and/or psychological challenges, ideology and practical reality often collide. The Olmstead decision (Olmstead v. L.C., 1999) in community services and the initiation and reauthorization of the Individuals with Disability Education Act in educational circles (IDEA: Congress, 2002; IDEA, PL 105-17; Turnbull, Wilcox, Stowe, and Turnbull, 2001) were not only landmark in both their mandate and scope, but also furthered an ongoing crisis experienced by service providers across the country. Individuals with autism/DD who present with medical, psychiatric and/or behavioral challenges have been entering our classrooms and communities at an ever-increasing rate for years. The federal government has made the message clear: “Provide services for all individuals with special needs that are natural setting based and least restrictive in nature, and do it quickly.” The community has heard the message and responded with an unprecedented emphasis on community integrated housing and inclusive educational programming over the past 7-10 years (Sailor and Paul, 2004; Kormann and Petronko, 2002a; Daniel and King, 1997). Critical questions, however, remain unanswered: Has the practical reality of inclusion developed as smoothly as the philosophical underpinnings? Has the inclusion-based infrastructure developed sufficiently to ensure that a full range of appropriate services is available to this extremely challenged population? What clinical services are needed to best ensure that students and residents with autism/DD and behavioral challenges are supported in the most effective way possible?

The Dilemma That is Inclusion
Individuals that present with a combination of autism/DD and severe behavioral and/or psychiatric disorders have been labeled as dually diagnosed (Reiss, 1982) and make up a significant portion of the DD population (Reiss, 1985). When considered with medically frail individuals, this population has historically represented a group that requires more intensive, and sometimes segregated care in specialized residential (i.e. developmental centers) or academic (special education/self contained) programs. Treatment protocols are often complex, behaviors may be severe and the physical and emotional toll exacted on staff and families may be extraordinary. Maintaining the treatment environment as separate from the “typical” community may have been misguided but was nonetheless multi-functional: centralization of expertise and “protection” of the community from disruptive or dangerous behaviors often represented the philosophies which drove treatment decisions.

While the philosophy regarding the support of individuals with dual diagnosis has clearly changed, the debate regarding the impact of inclusion has not. The literature is mixed regarding the impact on academic progress for students with and without disabilities in traditional versus inclusive classrooms (Wallace, Doney, Mintz-Resudek and Tarbox, 2004; Cole, Waldron and Majd, 2004; Daniel and King, 1997; Kauffman, 1995) as well as on the effects of community acceptance, socialization and attitudes (Kormann and Petronko, 2002b; Hieneman & Dunlap 2000; Luiselli, Wolongevicz, Egan, Amirault, Sciaraffa, and Treml, 1999; Koegel, Koegel and Dunlap, 1996). Therefore, as we begin to ponder clinical intervention, the question of “point of entry” seems to be critical in attempting to identify “who the client really is” and where exactly the burden of clinical intervention really lies.

Supporting Individuals in Community Settings
Developing an ongoing training and intervention mechanism for direct support staff (i.e. classroom teachers and aides; residential staff) faced with the frequent occurrences of challenging behaviors is critical. Such support must address the idiosyncratic needs of the individual, the staff, the environment and the socio-political system in which the behaviors are displayed (Petronko, Harris and Kormann, 1994; Colond & Weisler, 1995; Kormann & Petronko, 2002). These variables must be reflected in any intervention approach as they represent the “natural setting” in which the identified individual exists. These needs can best be met by an on-site behavioral training model, which does not necessarily view the referred person as the “target client" and therefore does not direct its only attention to that individual. A service that focuses on the natural setting and earmarks the parent/staff as the designated consumer of training and the initial vehicle for change seems to be the most appropriate option (Petronko, Anesko, Nezu & Pos, 1988; Petronko, et al. 1994; Felce deKock & Repp, 1986; Carr, Horner, Turnbull, Marquis, McLaughlin, McAtee, Smith, Ryan, Ruef, and Doolabh 1999; Feldman, Condillac, Tough, Hunt, and Griffiths 2002; Kormann and Petronko, 2002). A critical goal that must be achieved in any naturally based support system, however, is that of behavioral competence. If the level of competence that a parent/staff member possesses can be increased through training, he/she can function as a natural support for the individual’s behavior without necessarily contaminating the environment with an observing behavioral consultant. Natural supports are frequently discussed as very attractive when building service plans that are "person centered" (Holburn, 2001; Mount, 1994). It seems clear that a service system that provides for the delivery of behavioral support from the people that are already a part of an individual's life epitomizes the concept of "person centeredness."

There are several obstacles, however, that must be overcome when attempting to implement a treatment model that utilizes parents/direct service professionals as the agents of change. The stress associated with providing services to individuals with autism/DD and behavioral challenges in both community residences and classroom environments is well documented (Bersani & Heifitz, 1985; Blumenthal, Lavender and Hewson, 1998; Hagopian et al., 2002; Hastings & Brown, 2002; Mitchell & Hastings, 2001). Low pay, long hours, inadequate training in behavior management, and the potential for personal injury are all obstacles that the disability community must overcome in its attempt to provide effective and consistent behavioral support to individuals with dual diagnoses. A consultation model that views parents/staff members as “the experts” who are a required component to any effective treatment approach seems to address several challenges at once.

First, burnout is often linked to a reduction of “self efficacy” (Bandura, 1977; 1986), which is defined as the perception of one’s skills and abilities to have a positive impact on life’s outcomes. The effect of stress on parent’s sense of efficacy is described in reviews by Coleman and Karraker, (1998), Dyson, (1997) and Taylor (1983) and identifies one of the goals of behavioral consultation as the development of coping skills. The improvement in such skills is hypothesized to improve one’s perception of effectiveness and therefore one’s sense of self-efficacy. Moreover, burnout has been linked to the presence of chronic challenging behaviors, ineffective behavior management skills and negative emotional reactions generated in staff because of the targeted behavior (Mitchell & Hastings, 2002; Hastings & Brown, 2002). A behavioral consultation model that promotes self efficacy through the development of management skills and an intervention plan specifically tailored to the needs of the individual, caregiver(s) and environment, would engender a sense of control in not only the caregiver, but also in the identified consumer.

Second, behavioral competence increases the likelihood of mutually rewarding interpersonal experiences between caregivers and the referred individual. The easier it is for an individual with a dual diagnosis to obtain valued reinforcers through his/her behavior, the more likely it is that the parent will be in a position to deliver those rewards. It is quite likely that a relationship in which parents are frequently delivering reinforcers would be viewed as pleasant and ones in which consumers would like to engage more often. As the frequency of such instances increases, it stands to reason that quality of life variables for all involved would be enhanced. Stancliffe, Abery and Smith, (2000), Campo, Sharpton, Thompson, and Sexton, (1997) and Schalock (1994) agree that a clinical model that simultaneously promotes personal control and independence in the referred individual as well as self efficacy and the reduction in burnout in caregivers is critical for the enhancement of quality of life.

Finally, the improvement in behavioral challenges increases the likelihood that the referred individual can be maintained in more inclusive settings. Inclusion implies not only a presence, but an active participation in naturally occurring environments (residential or academic) for individuals regardless of developmental, psychiatric or behavioral challenges (Holburn, 2001). Bridging the gap between the philosophy and reality of inclusion therefore, seems to rest with the dilemma of developing appropriate accommodations and naturally based supports. Our challenge as we continue into the new millennium is clearly to develop clinical protocols that can simultaneously support individuals with autism/DD in their natural settings while not forgetting the critical role that parents, teachers and residential staff play in the future of our most fragile population.

Dr. Kormann is the Project Director for Natural Setting Therapeutic Management (NSTM), a community based behavioral support program at Rutgers, The State University, that serves individuals with developmental disabilities and severe behavioral challenges. Project NSTM provides on-site behavioral support to families and professional staff who work with referred individuals. Dr. Kormann has been with the Project since 1986 and during his tenure has focused his professional attention on issues of community and academic inclusion for individuals with behavioral challenges, as well as on community-based behavioral assessment. In addition to conducting extensive staff and parent training in behavior management, he has mentored many students in developing their professional expertise in this area. He serves as a behavioral consultant to over twenty school districts and residential programs throughout New Jersey and is both a licensed, clinical psychologist as well as a state certified school psychologist.

References

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Social Competence and Adolescents with Asperger Disorder This month’s issue of The OARacle features the second in a quarterly series of columns by Scientific Council Chairman Peter Gerhardt, Ed.D. about the state of autism research. Each article focuses on a particular area of research and discusses its importance in everyday practice. This month’s column focuses on social competence issues related to individuals with Asperger Disorder. Introduction At the heart of an Asperger Disorder (AS) diagnosis, and subsequently, any intervention, lies the issue of social understanding, skill sets and, ultimately, social competence (e.g. Tantum, 2002). But what do we mean by social competence? Gesten, et al. (1987) noted that social competence refers to a generalized “summary judgment of performance” (p.27) across environments. Social skills, the authors contend, are then best understood as discrete, verbal and nonverbal, component skills that enable us to meet our needs and avoid unpleasant circumstances. Social competence involves the behavioral, cognitive and affective domains (Topper, Bremner & Holmes, 2000) and incorporates the fluent use of such diverse, yet discrete, skills as establishing and maintaining appropriate eye contact (micro-skills) and engaging in conversation and relationship building (macro-skills) (Gesten, et al., 1987). Further, social competence and its assessments are, to a very large degree, context bound. As noted by Topper, Bremner & Holmes (2002), “Everyone is socially competent in at least one situation and no one is socially competent in all.” (p. 35). As such, any assessment of social competence for a learner with AS, on either a micro- or macro- level, needs to be recognized for what it is; a snapshot of abilities at a given time in a given environment. And while it is useful in providing a direction (or context) for intervention, its utility in predicting success in different environments for all but the most challenged learner may be somewhat limited. When the issue of social competence is discussed relative to persons with AS, there needs to remain an awareness of the temporal nature of competence as a function of both individual skill sets and the context in which the skills are utilized. Moving Beyond Social Survival In practical terms, this is of critical importance as the adolescent learner with AS prepares for the world of post-high school adulthood. As part of this transition, what was once a familiar, generally consistent, environment in the form of a structured school day rapidly comes to an end. At that point, skills and abilities that may have been appropriate and functional during the school day may be ineffective and dysfunctional in future environments. Failure on the part of the individual’s transition team to take this into account and to provide multiple opportunities to become socially, emotionally and physically comfortable with the “transition to” environment offers little, if any opportunity for the individual to succeed. In the absence of fluent social competence however, addressing what may be referred to as social survival skills may be a necessary first step. Social survival skills are those base, minimum skills necessary for one to successfully navigate one’s environment. In a way, they are like the turn signals on a car in that knowing their use is truly necessary for safe vehicle navigation but hardly a sufficient condition for competing on the NASCAR circuit. For another example, we can examine the job interview process both from the point of view of social competence and social survival. Under ideal circumstances, a degree of social competence would be considered highly desirable during a job interview process (e.g. establish rapport, talk about last night’s game, discuss alma maters, etc.). But in the absence of these skills, there are some social survival skills (i.e., establishing eye contact, smiling when greeting interviewer, avoidance of controversial discussion topics, some ability to self promote) that may be sufficient to highlight one’s employability and allow one to gain access to employment. Instructional strategies and packages for developing individual social skills and, to some extent, small areas of social competence have been reported in the literature (e.g., Baker, 2000; Barnhill, et al, 2002; Gray, 1995, Koegel & Koegel, 1995) What is, however, somewhat less discussed is the concept of reinforcement as a critical variable in developing social skill repertoires. Social skills are generally recognized as functional in that their use results in either the receipt of positive outcomes or the avoidance of negative ones. That is to say, social skills are reinforced (strengthened) in individual repertoires by their naturally occurring consequences. A compliment offered to a colleague after a recent talk may be reinforced by subsequently having greater access to the colleague and their work or by having them show interest in your work. Similarly, for the learner with AS offering the compliment, the potential reinforcement may be an immediate and detailed three hour discussion on the topic. Anything other than that is then recognized as undesirable and would, therefore, reduce that likelihood that “compliment giving” will become a fluent part of the individual’s repertoire. As such, there would appear to be a significant need to better understand, on a case by case basis, what individual outcomes would function as powerful reinforcers and, therefore, be capable of maintaining a particular social skill if we are to help develop lasting social skill repertoires. The closest (if still somewhat distant) parallel in the Applied Behavior Analysis literature may be the functional analysis of the conditions maintaining problematic behavior (e.g. Iwata, et al, 1982). In brief, functional analysis involves the manipulation of potential consequence conditions so that those conditions reliably determined to be maintaining the behavior may be further manipulated to effectively reduce the behavior in question. Of critical importance is that these identified conditions are individualized, idiosyncratic and often complex in nature. Similarly, those same descriptors (individualized, idiosyncratic, and complex) most likely apply to the conditions that support effective social behavior. Without a fairly comprehensive understanding of what an individual with AS hopes to get out of a friendship and in what context he or she expects that to occur, strategies to teach the development of friendships may only rarely be reinforced and, subsequently, generally ineffective. As such, assessments of individual learners with AS within the context of the systems in which they live, work and play, may prove to be critical if effective interventions are to be developed and individual learners are to move further away from social survival and closer to social competence. References Baker, J. (2000). Social skills training for children with Asperger Syndrome. New Jersey Psychologist. 50, 21-25. Barnhill, G.P., Cook, K.T., Tebbenkamp, K., & Myles, B.S., (2002). The effectiveness of social skills intervention targeting nonverbal communication for adolescents with Asperger Syndrome and related pervasive developmental delays. Focus on Autism and Other Development Disorders, 17, 112-118. Gesten, E.L., Weisberg, R.P., Amish, P.L., Smith, J.K. (1987). Social problem solving training: A skills based approach to prevention and treatment. In C.A. Maher & J.E. Zins (Eds.) Pyschoeducational evaluations in schools: Methods and procedures for enhancing student competence, (pp. 197-210). New York: Pergamon. Gray, C.A. (1995). Teaching children with autism to “read” social situations. In K.A. Quill (Ed.) Teaching children with autism: Strategies to enhance communication and socialization. (pp219-242). New York: Delmar Publishers. Iwata, B.A., Dorsey, M.F., Slifer, K.J., Bauman, K.E., & Richman, G.S. (1982). Toward a functional analysis of self injury. Analysis and Intervention in Developmental Disabilities, 2, 3-20. Koegel, R.L. & Koegel, L.K. (Eds.). (1995). Teaching children with autism: Strategies for initiating positive interactions and improving learning opportunities. Baltimore: Brookes. Tantam, D. (2002). Adolescence and adulthood for individuals with Aspergers Syndrome. In A. Klin, F. Volkmar, & A. Sparrow (Eds.), Aspergers Syndrome (pp. 367-399). New York: Guilford Press Topper, K., Bremner, W., & Holmes, E.A. (2000). Social competence: The social construction of the concept. In R. Bar-On & J.D.A. Parker (Eds.), The handbook of emotional intelligence, (pp. 28-39). San Francisco: Jossey Bass.

Profile of the Month: University of Pittsburgh Center of Excellence in Autism Research In this month’s issue of The OARacle, we profile the University of Pittsburgh, Center of Excellence in Autism Research. A bi-monthly feature, the Profile of the Month focuses on the valuable contributions of a member or organization in the autism community. The University of Pittsburgh’s Autism Research Program and the Center for Cognitive Brain Imaging at Carnegie Mellon University have been named one of ten Collaborative Programs of Excellence in Autism (CPEA) and received a 5-year, $7 million grant from the National Institutes of Health (NIH) to conduct research that may help pinpoint the specific cognitive processes impaired in autism and the underlying abnormalities in the activity and “wiring” of the brain The CPEA, an international network which began in 1997 with 42 million dollars in funding from the NIH, came about as a result of a congressionally mandated conference on “The State of the Science in Autism” to identify gaps in the knowledge of autism directions for future research needed to achieve a biological cure. This large National Institutes of Health (NIH) effort has identified Pittsburgh’s Autism Research Center with the acclaimed distinction as a NIH Center of Excellence in Autism Research. “We work with other centers trying to find the genetic, neurological, and cognitive basis for autism and we do this through a variety of ways,” said Rick Glosser, M. Ed., who has been with the Autism Research Program at Pittsburgh since July 2001. Mr. Glosser is responsible for the administration of the Autism Diagnostic Observation Scale (ADOS), the Broader Phenotype Autism Symptom Scale (BPASS), and neuropsychological tests. “We are trying to identify the basis for autism, looking at individuals between 8 and 55 years of age with high functioning autism and Aspergers, in order to learn how people with autism think and how the brain works while they are thinking.” The Autism Research Program identifies families nationally with two or more children older than 2.5 years of age with an Autism Spectrum Disorder of any level or severity. “This doesn’t involve a trip to Pittsburgh and many interviews can be done over the phone,” says Glosser. “Once a family is identified as eligible, researchers from the University of Washington travel to their home to conduct pencil and paper studies, such as IQ and eye movement analysis. The family is then brought to Pittsburgh with all travel and hotel expenses paid.” Pittsburgh’s state of the art studies implement functional magnetic resonance imaging (fMRI), eye movement studies, computerized cognitive tests developed at Carnegie Mellon University, and neuropsychological testing developed to define the deficient cognitive processes, their location in the brain and their impact on behavior. The underlying goal is to identify any abnormalities in the brain’s “wiring”, enabling improved diagnosis and earlier recognition. Pittsburgh researchers are seeking 300 verbal individuals with autism between 8 and 55 years of age who have IQ scores of 80 or above. It is important to note there is no cost for these studies, travel, and accommodation. Individuals can participate in as many studies as they qualify for, new studies are continuously added, and the NIH grant is good through 2007. For more information please visit the University of Pittsburgh’s Autism Research Program Web site, or call 1-866-647-3436.

RESOURCE

The Cycle of Tantrums, Rage, and Meltdowns

Note to readers: In each issue of The OARacle, we provide a helpful resource on a topic of interest within the autism community. This month's article by Brenda Smith Myles, PhD, is a review of Dr. Myles’s recent presentation at the 2004 Applied Autism Research and Intervention Conference. Special thanks to Dr. Myles for her contribution.

By Brenda Smith Myles, PhD

Many students with Asperger Syndrome and other autism spectrum disorders (ASD) view school as a stressful environment, presenting several stressors that are ongoing and of great magnitude. Stressors include difficulty predicting events because of changing schedules, tuning-in to and understanding teacher directions, interacting with peers and anticipating differences in environments such as classroom lighting, sounds/noises, odors, etc. Students with this exceptionality rarely indicate in any meaningful way that they are under stress or experiencing difficulty coping. In fact, they may not always know that they are near a stage of crisis. Even though the individuals themselves often do not recognize that they are upset, meltdowns do not occur without some observable warning. Rather, students with ASD exhibit a pattern of behaviors that are precursors to a behavioral outburst. Sometimes these behaviors are subtle. Without a clear understanding of rage and the cycle in which it occurs, it may indeed appear as if rage occurs without warning. Tantrums, rage, and meltdowns (terms that are used interchangeably) typically occur in three stages that can be of variable length. These stages are (a) ‘the rumbling stage’, (b) ‘the rage stage’, and (c) ‘the recovery stage’ (Myles & Southwick, 1999).

The Rumbling Stage
The rumbling stage is the initial stage of a tantrum, rage, or meltdown. During this stage, children and youth with ASD exhibit specific behavioral changes that may not appear to be directly related to a meltdown. The behaviors may appear to be minor such as nail biting, tensing muscles, or otherwise indicating discomfort. It is easy at this stage to ignore these seemingly minor behaviors; yet, these behaviors often indicate an impending crisis. Students may also engage in behaviors that are more pronounced, including withdrawing from others or threatening others verbally or physically.

During this stage, it is imperative that an adult intervene without becoming part of a struggle. Effective interventions during this stage include: ‘antiseptic bouncing’, ‘proximity control’, ‘support from routine’ and ‘home base’. All of these strategies can be effective in stopping the cycle of tantrums, rage, and meltdowns and they are invaluable in that they can help the child regain control with minimal adult support (Myles & Southwick, 1999).

Antiseptic Bouncing
Antiseptic bouncing involves removing a student, in a nonpunitive fashion, from the environment in which the difficulty is occurring. At school, the child may be sent on an errand. At home, the child may be asked to retrieve an object for a parent. During this time, the student has an opportunity to regain a sense of calm. Upon returning, the problem has typically diminished in magnitude and the adult is on hand for support, if needed.

Proximity Control
Rather than calling attention to the behavior, this strategy allows the teacher or parent to move near the student who is engaged in the target behavior. Often something as simple as standing next to a child is calming. This can easily be accomplished without interrupting an ongoing activity.

Support From Routine
Displaying a chart or visual schedule of expectations and events can provide security to children and youth with ASD who typically need predictability. This technique can also be used as advance preparation for a change in routine. Informing students of schedule changes can prevent anxiety and reduce the likelihood of tantrums, rage, and meltdowns. For example, the student who is signaling frustration by tapping his foot may be directed to his schedule to make him aware that after he completes two more problems he gets to work on a topic of special interest with a peer. While running errands, parents can use support from routine by alerting the child in the rumbling stage that their next stop will be at a store the child enjoys.

Home Base
A home base is a place in the school where an individual can escape stress. The home base should be quiet with few visual or activity distractions and activities should be selected carefully to ensure that they are calming rather than alerting. In school, a resource room or counselor’s office can serve as a home base. The structure of the room supersedes its location. At home, the home base may be the child’s room or an isolated area in the house. But regardless of its location, it is essential that the home base is viewed as a positive environment. Home base is not timeout or an escape from classroom tasks or chores. The student takes class work to home base, and at home chores are completed after a brief respite in the home base. Home base may be used at other times than during the rumbling stage. At the beginning of the day, a home base can serve to preview the day’s schedule, introduce changes in the typical routine, ensure that the student’s materials are organized, or prime for specific subjects. At other times it can be used to help the student gain control after a meltdown.

When selecting an intervention during the rumbling stage, it is important to know the student, as the wrong technique can escalate rather than de-escalate a behavior problem. It is important to understand that interventions at this stage are merely band-aids. They do not teach students to recognize their own frustration or handle it. These strategies must be taught in a preventative manner so that the cycle does not begin.

Rage Stage
If behavior is not diffused during the rumbling stage, the child or adolescent may move to the rage stage. At this point, the student is disinhibited and acts impulsively, emotionally, and sometimes explosively. These behaviors may be externalized (i.e., screaming, biting, hitting, kicking, destroying property or self-injury) or internalized (i.e., withdrawal). Meltdowns are not purposeful, and once the rage stage begins, it most often must run its course. During this stage, emphasis should be placed on child, peer, and adult safety as well as protection of school, home, or personal property. The best way to cope with a tantrum, rage, or meltdown is to get the child to home base. As mentioned, this room is not viewed as a reward or disciplinary room, but is seen as a place where the student can regain self-control. Of importance here is helping the individual with ASD regain control and preserve dignity. To that end, adults should have developed plans for (a) obtaining assistance from educators such as a crisis teacher or principal, (b) removing other students from the area, or (c) providing therapeutic restraint, if necessary.

Recovery Stage
Following a meltdown, the child with ASD often cannot fully remember what occurred during the rage stage. Some may become sullen, withdraw, or deny that inappropriate behavior occurred, others are so physically exhausted that they need to sleep. It is imperative that interventions are implemented at a time when the student can accept them and in a manner the student can understand and accept them. Otherwise, the intervention may simply resume the cycle in a more accelerated pattern leading more quickly to the rage stage. During the recovery stage, children are often not ready to learn. Thus, it is important that adults work with them to help them to once again become a part of the routine. This is often best accomplished by directing the youth to a highly motivating task that can be easily accomplished such as an activity related to a special interest.

Summary
Students with ASD experiencing stress may react by having a tantrum, rage, or meltdown. Behaviors do not occur in isolation or randomly; they are most often associated with a reason or cause. The student who engages in an inappropriate behavior is attempting to communicate. Before selecting an intervention to be used during the rage cycle or to prevent the cycle from occurring, it is important to understand the function or role the target behavior plays. This is a first step in developing effective interventions. Indeed, without determining reasons, causes, or conditions under which a behavior occurs, it is unlikely that an intervention will be effective.

Children and youth with ASD generally do not want to engage in tantrums, rage, and meltdown. Rather, the rage cycle is the only way they know of expressing stress, coping problems, and a host of other emotions to which they see no other solution. Most want to learn methods to manage their behavior, including calming themselves in the face of problems and increasing self-awareness of their emotions. The best intervention for tantrums, rage, and meltdowns is prevention. Prevention occurs best as a multifaceted approach consisting of instruction in (a) strategies that increase social understanding and problem solving, (b) techniques that facilitate self-understanding and (c) methods of self-calming.

Brenda Myles, Ph.D.*, is Associate Professor of Special Education at the University of Kansas in Kansas City, KS. Dr. Myles writes and speaks internationally on Asperger Syndrome and autism. Her recent books include Asperger Syndrome and Adolescence: Practical Solutions for School Success, Asperger Syndrome and Sensory Issues: Practical Solutions for Making Sense of the World, Asperger Syndrome and Difficult Moments: Practical Solutions for Tantrums, Rage, and Meltdowns (co-authored by Jack Southwick), This Is Asperger Syndrome (co-authored with Elisa Gagnon), Asperger Syndrome: A Guide for Educators and Parents, and Educating Children and Youth with Autism (the latter two co-authored by Richard L. Simpson).

References
Myles, B.S., & Southwick, J. (1999) Asperger syndrome and difficult moments: Practical solutions for tantrums, rage, and meltdowns. Shawnee Mission, KS: Autism Asperger Publishing Company.

Events

Other Voices VIII
Carolines on Broadway, New York
Monday, May 16, 2005

You are invited to an evening of comedy and cabaret in the Big Apple benefiting autism research and a New York City women’s theatrical organization. Marking its eighth year on stage, Other Voices makes it possible to hear the voices of those not presently heard - rising talent in the performing arts and those diagnosed with autism who cannot speak. Last year’s event raised $50,000, the highest total ever. Please help us break another record this year.

The show will be held once again at the famed club, Carolines on Broadway, and includes a cocktail reception, followed by dinner and an extraordinary show. For information on tickets and sponsorships, contact Mike Maloney by e-mail or by phone: (703) 351-5031.

OAR is a nonprofit organization established in accordance with section 501(c)(3) of the IRS Code and is incorporated in the Commonwealth of Virginia (EIN#54-2062167). As provided for under the laws of the Commonwealth of Virginia, copies of OAR's financial statements are available upon request form the State Division of Consumer Affairs in the Department of Agriculture and Consumer Services in Richmond, VA.

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