Planning for a Successful Day: Comprehensive Autism Planning

by Shawn A. Henry, M.S., and Brenda Smith Myles, Ph.D.

Shawn A. Henry is the Executive Director at the Ohio Center for Autism and Low Incidence (OCALI). He concentrates on developing statewide change efforts in promoting advances in the training of professionals serving students with autism.

Brenda Smith Myles is the Chief of Programs and Development at OCALI, an associate professor in the Department of Special Education at the University of Kansas, and a founding member of OAR’s Scientific Council. The recipient of the 2004 Autism Society of America’s Outstanding Professional Award, she has written numerous articles and books on Asperger Syndrome and autism.

As educators, we often hear phrases such as: “All students can learn.” or “High standards and high success.” Meeting these expectations for neurotypical students is challenging, but this task can be even more daunting for learners who have complex needs, including those with autism spectrum disorders (ASD). Educational professionals must ensure that students with ASD (as well as other learners) have access to the general education curriculum, are engaged in meaningful activities, and meet state standards. How do teachers translate these goals into meaningful classroom practices for students with ASD? What considerations go into planning an educational program that is responsive to the unique needs of a student with an ASD?

The answers to these questions include identifying clearly defined objectives and goals and selecting activities that take into account the student’s need for structure, reinforcement, modes of communication, socialization opportunities, and academic goals, as well as access to the general education curriculum. Although this sounds overwhelming, a well-organized plan can make these tasks manageable and effective.

Multidisciplinary teams, including parents, spend a significant amount of time on a student’s individual education programs (IEPs), identifying present level of performance as well as goals and objectives that will help students be successful in school. Even though student outcomes are delineated, it is often difficult to fully transfer them to a student’s daily program (Aspy & Grossman, 2007). For example, a student’s IEP may indicate that she needs sensory input; yet educators, in particular general educators, often do not know what type of support should be provided and when it should occur. The same child may also need a choice board or a visual schedule to enhance performance. Such accommodations may not be listed on the IEP even though they are integral to the child’s success, leading to frustration for both the teacher and the child, limitations in accessing the general education curriculum, and/or severe behavior challenges.

When planning programs for children and youth, it is essential that all educational professionals understand how and when to implement instructional recommendations and supports. This is particularly important for students with ASD because they require consistency, preparation for events prior to their occurrence, and supports that match their learning style (i.e., typically visual) (Janzen, 2003; Macintosh & Dissanayake, 2006).

In addition, supports must be created so that they are compatible not only with a child’s needs, but also with the environment in which the child is expected to perform. This important consideration is all too often ignored. For example, if a child sits at a desk most of the time during a class, a visual support that is Velcroed® to the desk or to a notebook may be useful. If, on the other hand, the child moves frequently during class, she may need a visual support that moves with her or is accessible from all areas of the room.

To ensure that supports match the student’s environment and that educational professionals know when they are to be used across the school day, it is imperative that supports be planned by and communicated to all teachers who work with students with ASD.

Using the Comprehensive Autism Planning System

To date, few models have been designed to accomplish these tasks. Fewer yet are easily developed and implemented. The recently introduced Comprehensive Autism Planning System (CAPS; Henry & Myles, 2007), however, has been designed to accomplish those tasks while being easy to develop and implement. Specifically, CAPS is designed to provide an overview of a student’s daily schedule by time and activity as well as the supports that he needs during each period. Once a student’s IEP has been developed, all of the educational professionals who work with the student create the CAPS. Because it is developed by the whole educational team, CAPS allows professionals and parents to answer the all-important question for students with an ASD: What supports does the student need for each activity?

As shown in Figure 1, the CAPS is simply a list of a student’s tasks and activities, the times they occur, and a delineation of the supports needed to support student success. In addition, the CAPS includes space for making notations about data collection and how skills are to be generalized to other settings.

Figure 1 (click to enlarge)

The CAPS consists of the following components developed from evidence-based practices for students with ASD:

• Time: This section indicates the time for each activity the student engages in throughout the day.
• Activity: Activities include all tasks and activities throughout the day in which the student requires support. Academic periods, reading and math, for example; nonacademic times, such as recess and lunch; and transitions between classes would all be considered activities.
• Targeted Skills to Teach: These may include IEP goals, state standards, and/or general skills that lead to school success.
• Structure/Modifications: These can encompass a wide variety of supports, including placement in the classroom, visual supports (e.g., choice boards, visual schedules), peer supports (e.g., Circle of Friends, peer buddies), and instructional strategies (e.g., priming, self-monitoring).
• Reinforcement: Student access to specific types of reinforcement as well as a reinforcement schedule are included in this section.
• Sensory Strategies: Sensory supports and strategies identified by an occupational therapist are listed here.
• Communication/Social Skills: Specific communication goals or activities as well as supports are delineated in this section. Goals or activities may include  requesting help, taking turns in conversation, or protesting appropriately. Supports, which are also diverse, may encompass language boards, PECS (Picture Exchange Communication Systems; Frost & Bondy, 2002), or other augmentative communication systems.
• Data Collection: Data collection includes gathering information on the type of data as well as the behavior(s) to be documented during a specific activity. Typically, this section relates directly to IEP goals and objectives.
• Generalization Plan: Because individuals with ASD often have problems generalizing information across settings, this section of the CAPS was developed to ensure that generalization of skills is built into the child’s program.

Ginny’s CAPS

The following brief case study shows how CAPS was implemented for Ginny, an 8-year-old student with ASD. Ginny is in the second grade and tested “below-average age.” Ginny uses PECS (Frost & Bondy, 2002) to communicate but shows limited generalization to school staff and none among peers. She receives her education in a kindergarten-first-grade resource room and is included in a general education classroom during “specials” and early-morning calendar group. Ginny experienced some behavioral issues related to transitions, attention to task, and interacting appropriately with peers. Observations in Ginny’s classrooms confirmed behavioral issues identified as problematic and revealed an inconsistent use of supports. Ginny’s team met to create a CAPS to match Ginny’s daily schedule. A partial view of the CAPS is presented in Figure 2.

Figure 2 (click to enlarge)

Like most students, Ginny’s day begins before her first academic class. She starts with breakfast at school. As shown on the CAPS, Ginny will be learning three skills during this time: making choices, using a language board, and using a schedule. The reinforcement is natural for use of choice and language boards—eating the food she chooses from the breakfast menu. While Ginny does not need sensory supports for this activity, she does require communication and social interventions. She has social questions on her language board and a visual support that illustrates table manners. Data collected include the choices she makes and the number of times she uses her language board.

Between 8:05 and 8:20, Ginny completes independent morning work. The CAPS details supports for this task. For example, for morning work, Ginny is to complete five math problems that will result in earning a break. A visual support is used to break down the task into its component parts, and sensory supports include a box that masks problems on the worksheet and a slant board that aids in writing. Data are collected by Ginny through self-monitoring on following class rules posted in the room and her teacher on completion of the five math problems. Self-monitoring was chosen for generalization and because Ginny has asked to monitor her behavior at different times throughout the day. Figure 3 presents Ginny’s CAPS and the materials that help her complete her daily tasks. This figure represents a mini-portfolio of Ginny’s day. This pictorial representation serves multiple purposes:

• It links the task to needed supports.
• This CAPS provides a visual model for substitute teachers, para-educators, and others who may work with Ginny throughout the day.
• It can help Ginny’s future teachers understand the supports that Ginny needed in each environment.

In this way, the CAPS, with its supporting visual representations, ensures current and future success for Ginny at school.

Figure 3 (click to enlarge )

Summary

The CAPS is a multi-faceted program that allows educational professionals to know at a glance the goals for an activity and what students with ASD need to successfully engage in each activity. Completed by a team, CAPS can facilitate student independence across settings, activities, and people. This breakthrough tool supports compliance with the student IEPs and special education legislation while reducing teachers’ workloads. Because of the CAPS structure, it has broad applicability for children and youth with autism spectrum disorders.

You can find out more about CAPS on the OCALI Web site at http://www.ocali.org/documents/index.php?id=13 in the Ziggurat to CAPS folder at the bottom of the box. The Comprehensive Autism Planning System (CAPS), a book by Shawn Henry and Brenda Myles, will be published in July.

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: Autism Asperger Publishing Company.

Frost, L. & Bondy, A. (2002). The Picture Exchange Communication Systems Training Manual. Newark, DE: Pyramid Educational Products.

Henry, S. & Myles, B. S. (2007). The Comprehensive Autism Planning System (CAPS). Shawnee Mission, KS: Autism Asperger Publishing Company.

Janzen, J. (2003). Understanding the Nature of Autism: A Guide to Autism Spectrum Disorders (2nd ed.). San Antonio, TX: Therapy Skill Builders.

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Perspective: Understanding Autism: From Intervention to OUtcome

By Michael Alessandri, Ph.D., and Roberto Tuchman, M.D., FAAN, FAAP

Dr. Michael Alessandri is the director of the University of Miami Center for Autism and Related Disabilities, clinical associate professor of psychology at the University of Miami, and a member of OAR’s Scientific Council. He has worked with individuals with autism and their families for over 25 years. Prior to arriving in South Florida in 1996, Dr. Alessandri was an Assistant Professor of Psychology at San Jose State University (SJSU) and Associate Director of the Stanford University Pervasive Developmental Disorders Clinic.

Dr. Roberto Tuchman is the director of Autism Programs at Miami Children’s Hospital Dan Marino Center and the director of Developmental and Behavioral Neurology at Miami Children’s Hospital. He was the founding director of the Miami Children’s Hospital Dan Marino Center for children with developmental disorders, serving as its executive medical director from its start in 1998 through 2001.  Dr. Tuchman is an associate professor of neurology at Miami Children’s Hospital, in association with the University of  Miami’s Miller School of Medicine.  

Despite reports that outcome in individuals with autism spectrum disorders may be improving following early intensive interventions, we still have much to learn about the natural history of the disorders and the effects of intervention.  While there may not yet be a known cure for autism, a number of viable (although not always easily accessible and affordable) treatment options are available.  The primary therapeutic approaches are non-pharmacological treatments that include applications of behavior analysis (e.g., Koegel, Koegel, & McNerney, 2001; Lovaas & Smith, 1989; McEachin, Smith, & Lovaas, 1993; Schreibman, 2000; Sundberg & Michael, 2001), developmental theory (Wieder & Greenspan, 2003), structured teaching (e.g., Panerai, Ferrante & Caputo, 1997; Panerai, Ferrante, & Zingale, 2002), and various ancillary therapies.  There is limited empirical support documenting that any of these approaches has an impact on the core social-communication disturbance in autism, with the possible exception of an emerging literature on joint attention as a behavioral intervention target (e.g., Jones & Carr, 2004; Whalen & Schreibman, 2003; Whalen, Schreibman, & Ingersoll, 2006).  The role of pharmacological interventions is best thought of as adjunctive and is typically limited to treating specific symptoms (not core social-communication symptoms) that appear to be interfering with a child’s ability to learn or function within a particular environment.  The question of whether or not we can cure autism needs to be discussed in terms of the need to overcome the as yet poorly understood fundamental disturbance in autism and to develop treatment protocols specifically targeting social deficits.  At the present time, it is more appropriate to speak of our quest to understand autism than it is to speak of a cure.

Behavioral and Educational Interventions

Autism includes a heterogeneous group of people with behavioral deficits in social cognition, communication, and with a restricted range of interests and repetitive behaviors (Rapin & Katzman, 1998).  A wide range of cognitive challenges and a variety of behaviors and medical conditions are known to be associated with the autism spectrum.  Despite the complexity of this disorder, emerging data from neurobiological investigations suggest that we can identify specific networks that are crucial for social communication  (Adolphs, Baron-Cohen, & Tranel, 2002; Grady & Keightley, 2002).  The hope is that by identifying social deficits early we can implement behavioral and educational interventions that will address these core social challenges and also be specific enough to maximize each child’s potential.  In the absence of a reliable biological marker for autism, understanding the determinants of prognosis and assessing the impact of interventions is a difficult undertaking.  While a high degree of parental satisfaction with treatments appears to exist, instances of “recovery” are hard to document and the majority of children with autism require continued dependence on therapy and structured educational settings (Boyd & Corley, 2001). We will address aspects of this problem not by trying to determine if a cure for autism is a reasonable or achievable goal but instead by discussing what we know and what we need to learn about outcomes and interventions in children with autism spectrum disorders. 

Numerous “psycho-educational” interventions have been described for use with individuals with autism spectrum disorders over the years, but few have been well-researched and validated.  Nevertheless, these non-pharmacological educational approaches continue to be the primary treatments for autism spectrum disorders (Lord et al., 2001).  While an expanding literature supports the utility of well-structured, highly engaging, intensive, individualized treatments for those affected by autism (Howlin, 1998; Lord et al., 2001), much remains to be learned about intervention in autism.  Perhaps most importantly, there are typically large individual differences in response to treatment, the impact on core social-communication symptoms remains unclear, and little is known about which methods are best suited to specific individuals with autism spectrum disorders.  Until the etiological and underlying neurobiological factors are more clearly elucidated and we become better informed about specific clinical subgroups, these challenges will remain.

Numerous specific interventions have been proposed since Kanner first identified autism in 1943.  These varied approaches represent a range of intervention philosophies (i.e., behavioral, developmental, cognitive), and while they are typically presented as distinct, one is likely to observe notable similarities in the actual clinical application of the principles in real-world therapeutic settings.  In fact, Dawson & Osterling (1997) have identified several critical common programmatic elements that may ultimately prove more important than any fundamental differences in “philosophy.”  Included among these critical program elements are:  scope and sequence of curriculum; supportive teaching environments with strategies and opportunities for generalization of skills; predictability and routines; functional approach to problem behavior; transition planning; and family involvement.

Pharmacotherapy

The use of medications in autism is typically limited to targeting specific symptoms that, although common in autism, may not be fundamental to the disorder (Arnold et al., 2003). This focused use of pharmacotherapy in autism is important, but what it means for the long-term outcome of those affected by autism remains unclear (Buitelaar, 2003).  For example, the use of antipsychotic medications for management of difficult behaviors and the use of anti-epileptic drugs to treat seizures are common practices in the clinical management of those with autism (Aman, Van Bourgondien, Wolford, & Sarphare, 1995), but their primary role in autism has not been established.

Despite successful uses of medications in autism to treat symptoms such as anxiety, obsessive-compulsive behaviors, aggression, impulsivity, and hyperactivity (Aman & Langworthy, 2000; Gilman & Tuchman, 1995; Santosh & Baird, 2001; Tsai, 1999), there are no reports of significant changes in the long-term outcome of children treated with medications relative to the social deficits that primarily define the disorder (Posey & McDougle, 2001).  Furthermore, psychopharmacology in autism has several other critical limitations, as reviewed by Palermo & Curatolo (2004).  Some of the concerns include the small number of subjects treated under controlled conditions, few double-blind studies, the lack of consistent replication, and the short duration of medication trials.  In addition, reliable instruments to measure medication effects are not readily available, and there appears to be limited cooperation between the medical and educational communities in designing appropriate studies (Arnold, Aman, Martin, Collier-Crespin, Vitiello, Tierney, et al., 2000).  Finally, the magnitude of improvement reported by investigators studying the effectiveness of medications on autism is of limited overall significance for the individual child.  To date, few current studies allow us to determine the efficacy of medications, and evaluating pharmacotherapy efficacy in autism is further complicated by the differences in signs and symptoms that occur in autism at different developmental stages, the variability in response to medication, and the lack of clear end-points and specificity of the medications (Aman et al., 2004).

Predictors of Outcome

The most reliable predictors of outcome are level of intelligence and ability as measured by IQ and language tests (Nordin & Gillberg, 1998).  While it seems apparent that outcomes vary widely, few long-term outcome studies are available, and those that are generally indicate a trend toward relatively poor outcomes for the majority of those affected by autism (Gillberg, 1991; Howlin, Goode, Hutton, & Rutter, 2004). Even those with high-functioning autism or Asperger Syndrome are frequently described as dependent adults who require rather extensive supports from their families and society (Engstrom, Ekstrom, & Emilsson, 2003).

The idea that long-term outcome in individuals with autism may be improving secondary to early intensive behavioral interventions is not without debate and continues to lack consistent empirical support (Howlin, 2003; Shea, 2004).  While it appears from a clinical or anecdotal perspective that children with autism are benefiting from early identification and intensive intervention, there is limited evidence to support the idea that children with autism who respond to treatment with improvements in language, IQ, achievement, and adaptive functioning (e.g., Harris, Handleman, Gordon, Kristoff, & Fuentes, 1991; Lovaas, 1987; McEachin, Smith, & Lovaas, 1993; Sallows & Graupner, 2005) are less symptomatic with respect to the core deficits of autism.  We still have much to learn regarding the natural history of autism, the predictors of outcome, and the types of interventions that can yield a positive effect on outcomes related to the core disturbance in autism.

Summary

Successful psychoeducational intervention programs appear to share a number of common elements such as high intensity, engagement, structure, and family involvement; the philosophical approach guiding the interventions may ultimately prove less important than the presence of these common elements.  Medications are best used to treat specific behaviors or a specific medical condition, such as clinical seizures, that interfere with an individual’s life or with the integration of an individual within a family or community. 

Adolphs, R., S. Baron-Cohen, and D. Tranel (2002). Impaired Recognition of Social Emotions following Amygdala Damage. Journal of Cognitive Neuroscience, 14(8): p. 1264-1274.

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Aman, M.G. and K.S. Langworthy (2000). Pharmacotherapy for hyperactivity in children with autism and other pervasive developmental disorders. Journal of Autism and Developmental Disorders, 30(5): p. 451-9.

Aman, M.G., M.E. Van Bourgondien, P.L. Wolford, and G. Sarphare (1995). Psychotropic and anticonvulsant drugs in subjects with autism: prevalence and patterns of use. Journal of the American Academy of Child and Adolescent Psychiatry, 34(12): p. 1672-81.

Arnold, L.E., B. Vitiello, C. McDougle, L. Scahill, B. Shah, N.M. Gonzalez, et al. (2003). Parent-defined target symptoms respond to risperidone in RUPP autism study: customer approach to clinical trials. Journal of the American Academy of Child and Adolescent Psychiatry, 42(12): p. 1443-50.

Arnold, L.E., M.G. Aman, A. Martin, A. Collier-Crespin, B. Vitiello, E. Tierney, et al. (2000). Assessment in multisite randomized clinical trials of patients with autistic disorder: the Autism RUPP Network. Research Units on Pediatric Psychopharmacology. Journal of Autism and Developmental Disorders, 30(2): p. 99-111.

Boyd, R.D. and M.J. Corley (2001). Outcome survey of early intensive behavioral intervention for young children with autism in a community setting. Autism, 5(4): p. 430-41.

Engstrom, I., L. Ekstrom, and B. Emilsson (2003). Psychosocial functioning in a group of Swedish adults with Asperger syndrome or high-functioning autism. Autism, 7(1): p. 99-110.

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Goldstein, H. (2002) Communication intervention for children with autism: a review of treatment efficacy. Journal of Autism and Developmental Disorders, 32(5): p. 373-96.

Grady, C.L. and M.L. Keightley (2002). Studies of altered social cognition in neuropsychiatric disorders using functional neuroimaging. Canadian Journal of Psychiatry, 47(4): p. 327-36.

Harris, S.L., Handleman, J.S., Gordon, R., Kristoff, B., & Fuentes, F. (1991).  Changes in cognitive and language functioning of preschool children with autism.  Journal of Autism and Developmental Disorders, 21(3), 281-290.

Howlin, P. (2003). Can early interventions alter the course of autism? Novartis Foundation Symposium, 251: p. 250-9; discussion 260-5, 281-97.

Howlin, P. (1998). Practitioner review: psychological and educational treatments for autism. Journal of Child Psychology and Psychiatry, 39(3): p. 307-22.

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Howlin, P., S. Goode, J. Hutton, and M. Rutter (2004). Adult outcome for children with autism. Journal of Child Psychology and Psychiatry, 45(2): p. 212-29.

Jones, E.A., & Carr, E.G. (2004). Joint Attention in Children with Autism: Theory and Intervention.  Focus on Autism and Other Developmental Disabilities, 19(1), 13-26.

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Koegel, R.L., L.K. Koegel, and E.K. McNerney (2001). Pivotal areas in intervention for autism. Journal of Clinical Child Psychology, 30(1): p. 19-32.

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McEachin, J.J., T. Smith, and O.I. Lovaas (1993). Long-term outcome for children with autism who received early intensive behavioral treatment. American Journal of Mental Retardation, 97(4): p. 359-72; discussion 373-91.

Nordin, V. and C. Gillberg (1998). The long-term course of autistic disorders: update on follow-up studies. Acta Psychiatrica Scandinavica, 97(2): p. 99-108.

Palermo, M.T. and P. Curatolo (2004). Pharmacologic treatment of autism. Journal of Child Neurology, 19(3): p. 155-64.

Panerai, S., L. Ferrante, and M. Zingale (2002). Benefits of the Treatment and Education of Autistic and Communication Handicapped Children (TEACCH) programme as compared with a non-specific approach. Journal of Intellectual Disability Research, 46(Pt 4): p. 318-27.

Panerai, S., L. Ferrante, and V. Caputo (1997). The TEACCH strategy in mentally retarded children with autism: a multidimensional assessment. Pilot study. Treatment and Education of Autistic and Communication Handicapped children. Journal of Autism and Developmental Disorders, 27(3): p. 345-7.

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Rapin, I. and R. Katzman (1998). Neurobiology of autism. Annals of Neurology, 43(1): p. 7-14.

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Sallows, G.O., & Graupner, T.D. (2005).  Intensive behavioral treatment for children with autism:  Four-year outcome and predictors.  American Journal on Mental Retardation, 110(6), 417-438.

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Whalen, C., Shreibman, L., & Ingersoll, B. (2006). The Collateral Effects of Joint Attention Training on Social Initiations, Positive Affect, Imitation, and Spontaneous Speech for Young Children with Autism.  Journal of Autism & Developmental Disorders, 36(5), 655-664.

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research Review: Meta-analysis

by Peter Gerhardt, Ed.D.

Peter Gerhardt, Ed.D.

Meta-analysis is a statistical technique that allows for the combining of results from a number of independent studies focusing on a given topic or a specific intervention. Meta-analyses allow us to extend our analyses beyond the small sample size of individual studies and single-case design research. In so doing, they provide us with a clearer and more precise estimate of the clinical utility of the intervention in question. This month’s article reviews focus on the meta-analysis of research pertaining to three common interventions with learners on the spectrum: video modeling, self management, and Social Stories (TM) .

A Meta-analysis of Video Modeling and Video Self modeling Interventions for Children and Adolescents with Autism Spectrum Disorders

Video modeling is a popular intervention that involves the demonstration of the target, or desired, behaviors through the use of video. Video modeling generally involves having individual learners watch a video demonstration of the desired behavior(s) with their subsequent imitation of the modeled behavior being reinforced. A variation of video modeling, video self-modeling, has the learner imitate the desired behavior as displayed by the learner him or herself.

In their meta-analysis of video modeling, the authors identified 23 studies, published between 1987 and 2005, that met their inclusion criteria. All told, 73 study participants, ranging in age from 3 to 21 years, were included in these studies with diagnoses including autism, Asperger Syndrome, and PDD-NOS. Skills targeted for change included social-communication skills, self-help skills, and behavioral functioning. The results indicated that both video modeling and video self-modeling effectively promoted skill acquisition and, further, that these skills tended to be maintained over time and generalized across persons and settings. Of further benefit, the authors noted, was that since the median duration of video clips shown to participants was only three minutes, the potential benefit of the video modeling and video self modeling to “time-strapped” educators in search of effective, yet easily implemented classroom interventions was significant. Hypothesizing the reasons that such interventions may be effective, the authors discuss such considerations as the combination of a potentially preferred learning modality (visual) with a well-studied intervention technique (modeling); the ability to remove irrelevant elements of the modeled behavior through creative video editing; a potential reduction in anxiety that may be associated with in-person modeling; and with regards to video self-modeling, motivational factors that may be associated with watching oneself on video.

Bellini, S., & Akullian, J., (2007). A meta-analysis of video modeling and video self modeling interventions for children and adolescents with autism spectrum disorders. Exceptional Children, 73, 264-287.

Effects and Implications of Self-management for Students with Autism: A Meta-analysis

Self-management is a procedure by which individuals learn to discriminate the occurrence of a defined behavior, record the occurrence of the behavior, evaluate the behavior according to an agreed-upon standard, and, as appropriate, deliver self-selected reinforcement. Self-management strategies have been discussed in the literature as being associated with the generalization of appropriate behavior across environments, the promotion of greater personal independence, and, to some extent, the successful inclusion of learners with disabilities in the general education classroom. In the current study, Hyang-Suk and colleagues conducted a meta-analysis on research (single-subject design) on self-management and learners with autism. Studies for which the participants were identified as having Asperger Syndrome, an autism spectrum disorder, or PDD-NOS were excluded from the analysis. Eleven articles published between 1992 and 2001 (no articles published after 2001 met the inclusion criteria) were included, representing 34 school-aged individuals with autism. The majority of included studies utilized self-management strategies to promote increased social responding.

The findings of the meta-analysis provided qualified support for the use of self-management strategies to increase appropriate behavior with students with autism. However, the authors noted that self-management should not be considered either universally effective or suitable for all students with autism and that the particular factors and means for most effectively using self-management interventions remain to be identified. Areas in need of future research include the extension of self-management to other behaviors (e.g., self-help skills), the utility of self-management in the general education classroom, the identification of the factors most consistently associated with positive outcomes, and the potential relationship between self-management and quality of life.

Lee, Hyang-Suk, Simpson, R.L., & Shogren, K.A., (2007). Effects and implications of self-management for students with autism: A meta-analysis. Focus on Autism and Other Developmental Disabilities, 22, 2-13.

Social StoriesTM for Children with Disabilities

Social StoriesTM have been described as short stories that define a concept, situation, or social skill in a way that is meaningful to learners with autism (Gray, 2003). Social StoriesTM  enjoy great popularity as interventions for learners with ASD due, at least in part, to being relatively easy to implement across a wide variety of behavior and situations, a high degree of face validity (they seem as though they should work), and a degree of support in the research literature. Reynhout and Carter, noting that no systematic review of the empirical research on Social StoriesTM had yet to be conducted, undertook a single-subject meta-analysis of the empirical research on Social StoriesTM in order to evaluate their effectiveness.

Only studies that explicitly identified the intervention as Social StoriesTM were included for analysis, including 11 peer reviewed journal articles and five dissertations. All but one study involved a child or children with autism or Asperger syndrome (67 participants in total), aged 3-15 years. The researchers identified a number of challenges with the existing research, including “considerable variation was seen in the use of Social StoriesTM in the studies in terms of construction, implementation, and the use of additional strategies” (p. 464), limited descriptions of the research participants, and inadequate attention to issues of generalization and maintenance.

Reynhout, G., & Carter, M. (2006). Social StoriesTM for Children with Disabilities. Journal of Autism and Developmental Disorders. 36, 445-469.

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Research Feature: Parental Sleep Education: A Program to Improve Sleep In Children with Autism Spectrum Disorders

by Beth A. Malow, M.D., M.S.

Dr. Malow is an associate professor of neurology at Vanderbilt University and director of the Vanderbilt Sleep Disorders Center. She is currently conducting research in this area supported in part by an OAR grant awarded in 2006. Prior to joining the faculty at Vanderbilt, Malow was a tenured associate professor of neurology at the University of Michigan and director of the Sleep Medicine Fellowship Program and the General Clinical Research Center Sleep Program.

Sleep is a basic human need—like food and water. Although we do not yet know precisely why we sleep, we do know how we feel when we haven’t had enough sleep—tired, unmotivated, irritable, and just “on edge.” Unfortunately, getting a good night’s sleep can be particularly difficult for children with autism spectrum disorders (ASD), who may resist going to bed, have trouble falling asleep or staying asleep, or wake up too early in the morning. There can be many reasons for these sleep difficulties.

Sleep difficulties in children with ASD are common reasons why parents seek medical intervention for their children. Insomnia, which is difficulty initiating or maintaining sleep, is one of the most common sleep concerns reported in these children. Insomnia contributes to sleep loss, which adversely affects daytime functioning and may exacerbate problematic daytime behaviors, including inattention and aggression. The many causes of insomnia in children with ASD include alterations in brain chemicals that promote sleep, such as serotonin and melatonin, as well as coexisting psychiatric symptoms, such as anxiety.

Poor sleep hygiene (sleep habits) is a less-emphasized contributor to insomnia in children with ASD.  Due to deficits in communication skills, children with ASD may not readily understand the expectations parents convey related to going to bed and falling asleep. Because parents of children with ASD must deal with multiple priorities and stressors, conveying these expectations in an effective way may be particularly challenging. Furthermore, these parents may lack the awareness that child-friendly alternatives to the “traditional” methods of promoting sleep in children (e.g., “crying it out”) do exist and can be implemented effectively.

The benefits of a parental sleep education program may go beyond promoting sleep in children with ASD. For example, the skills parents achieve in communicating expectations to their children may translate into other daily activities.

While previous research has been consistent in demonstrating the high prevalence of sleep disorders in children with ASD, many questions remain about the contribution of sleep hygiene to sleep difficulties and the effects of behavioral sleep interventions on children and their families. Behavioral treatments for sleep problems in children with developmental disabilities appear promising in improving sleep as well as daytime functioning of the child and reducing familial stress, although to date there have been only a limited number of studies with small samples of children.

A Research Program in Sleep and ASD

My team is currently conducting a research program in sleep and ASD at Vanderbilt Kennedy Center for Research on Human Development. Team members include Wendy Stone, Ph.D., professor of psychology and director of the Vanderbilt Treatment and Research Institute for Autism Spectrum Disorders (TRIAD), and Susan McGrew, M.D., assistant professor of pediatrics.

The goals for our ongoing study are:

• To examine the relation between insomnia, sleep habits, daytime behavior, and parental stress.
• To conduct a parental sleep education program for children with ASD, and determine whether this education program improves sleep habits, minimizes time to fall asleep and night wakings, positively affects daytime behavior, and impacts favorably on parental stress levels.

In March 2007, we conducted one parental education program, with a second session planned for later this spring and two additional sessions this fall. Five families participated in the first program, which consisted of three two-hour sessions held on consecutive Saturday afternoons. We provided child care to allow families to easily attend. Dr. McGrew; Suzanne Goldman, Ph.D., a sleep researcher specializing in actigraphy; and Kim Frank, a behavioral specialist with expertise in creating visual supports for children with ASD assisted me in conducting the sessions. Kay Artibee, RN, coordinated the sessions.

Sleep concerns expressed by the families included bedtime resistance, difficulty initiating sleep, night wakings, and restless sleep. Topics covered via presentations as well as breakout sessions included increasing afternoon light and daytime activity, promoting good sleep habits, developing a bedtime routine, enhancing the sleep environment, and optimizing parental interactions.

Prior to the educational sessions, parents completed surveys related to their child’s sleep and their own level of parental stress, and kept sleep diaries while their children wore actigraphy devices (wristwatch-like meters that measure activity and rest to estimate wake-sleep patterns). One month after the last educational session, these measures will be repeated to determine if the educational sessions resulted in improved sleep patterns and decreased parental stress.

We were pleased to have 100 percent attendance at all three sessions of our first educational program, and the feedback received from the families was highly favorable. Each family noted a substantial improvement in their child’s sleep patterns as a result of the program. Some of the “pearls” that families reported learning from the sessions included the importance of regular bedtimes and wake times, “timing” bedtime to coincide with when their child was maximally sleepy, keeping interactions during night wakings “brief and boring,” and using visual supports to teach expectations about bedtime.

We expect that our work will result in specific findings that will improve the sleep of children with ASD as well as their daytime behaviors and the stress on their families. Parenting a child with ASD is challenging, and dealing with the stressor of the child’s disturbed sleep can be overwhelming for the family, especially when it contributes to sleep loss and less-than-optimal daytime functioning in caregivers. In typically developing children as well as those with autism, sleep problems have been correlated with family or parental distress as well as with problematic daytime behavior. 

Behavioral treatment of sleep problems in children with intellectual disabilities and challenging daytime behavior reduces parental stress, increases parents’ satisfaction with their own sleep and their child’s sleep, and heightens their sense of control and ability to cope with their child’s sleep. We anticipate that the parental educational sessions that we provide to parents will assist them in helping their children sleep through the night, thereby reducing their own stress, increasing their own overall functioning, and allowing them to provide maximal support to their children in overcoming their disabilities.

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Salute: Teens Throw an Elegant, Educational Fundraiser to Benefit OAR

In May 2006, sisters Lauren, 17, and Chanelle, 15, Doucette and their friend Penny Jennewein, 15, participated in a walk to raise money for autism in San Diego, California, where all three live. For most people, that would have been the end of the story. They would have walked away, feeling understandably good for raising money for a good cause and a little better educated about autism and how it affects people who have it and their families.

For these three teenagers, though, that wasn’t enough. They wanted to do more. And they did.

They combined their wish to throw an elegant evening event with their desire to educate their friends about autism and its effects. On December 2, 2006, 50 young people, dressed in formal party attire, came to the Doucettes’ house for appetizers and desserts and an agenda that included learning about autism through several creative activities.

To say that the evening was inspirational and educational would be an understatement. Penny, Chanelle, and Lauren kicked off the evening with a PowerPoint presentation that detailed facts about autism. A representative from the Best Buddies Club at Torrey Pines, Richie Sapp, spoke to the guests about how they could get involved with the club. 

Then the girls showed a movie that they produced themselves. Lauren explains, “The movie was mostly Chanelle’s idea and she organized it. We asked a few of our friends who were attending what they thought autism was. The answers were surprising. We also interviewed a few people who are directly affected by autism such as an autistic boy's family and a behavioral therapist.” They also included a clip of Penny with students in a special education class. Lauren says making the movie, in addition to the other party preparations, changed how she looks at autism, and she believes that it did the same for Penny and Chanelle. “I met with several people, heard their stories, watched documentary movies and I am beginning to see how drastically these families have been changed and affected.”

The three teenagers didn’t stop at just informing their guests; they gave them an experience of what autism might feel like. Once again, Lauren explains, “We had two simulations. In one, Penny spoke in Hebrew to explain how to draw a house. No one understood what she said and they were confused and even frustrated. Then Chanelle read a short picture book out loud and flashcards were handed out that instructed some selected teens to do certain movements (flap their arms, walk up to the front of the room and back, etc) when a certain word was read out loud. This showed the frustration that people with autism have in learning and understanding speech, and also how they often  feel compelled to do certain actions.” After the simulations, they opened up the floor for questions, and some of the guests shared their stories of how autism had touched their lives. They devoted the remainder of the evening to dancing, eating dessert, and socializing.

The results? Through all of their work, Penny, Chanelle, and Lauren raised $800, which Chanelle and Lauren’s dad, Dennis Doucette, agreed to match, bringing the total to $1,600 for OAR. Penny’s parents helped to raise the total by donating the evening’s food. But the results of the evening went beyond the significant contribution to OAR.

The young women increased the awareness of all their guests and changed their own lives as well. “I went into this not really knowing a lot about autism, only what Penny and Chanelle told me. I became interested in autism because of the inspirational spirit that Penny had. She is so into autism and advocating for our community to be more aware that I felt inspired to make a difference. Speaking for all three of us, I can say that we were really affected and changed by this whole party. I feel a greater compassion for those with autism than I did before. We really achieved what we set out to accomplish: educating our peers for more understanding and compassion and financially supporting those who are researching autism.”

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Join OAR for Its Fifth Annual Conference

"This conference brings together some of the premier researchers and practitioners in the field to talk about one critical thing: the current state of applied research in autism."

- Peter Gerhardt, Ed.D.

The Organization for Autism Research is pleased to present the 5th Annual Applied Autism Research and Intervention Conference, a two-day forum on current autism research and evidence-based intervention with autism spectrum disorders. We hope that you will join us in October for presentations and workshops by top professionals in the field of autism and leading researchers and experts on various subjects related to education and intervention across the lifespan for individuals with autism and their families.

Scheduled keynote speakers include Raymond Romanczyk, Ph.D., BCBA, speaking about evidence-based practice, and Stephen Shore, ABD, addressing his life on the autism spectrum. The conference will feature four tracks: Research; Research to Practice; Transition Planning; and Support, Planning, and Intervention with School-Age Learners on the Spectrum.

The complete schedule is posted on OAR’s Web site, www.researchautism.org.  Here are a few of the speakers and topics:

• Shala Ala'i-Rosales, Ph.D., BCBA – The Importance of Measurement in Data-Based Decision Making in Educating Children with ASD
• Lori Bechner – Community Safety: Direct Instruction in Support of Safe Use of Public Restrooms
• Helen Bloomer, M.A., BCBA - Curriculum Development
• Paul Dores, Ph.D., BCBA – Integrating Evidence-Based Practice into Applied Settings
• Jennifer Gillis, Ph.D., BCBA – Assessment and Intervention in Social Competence
• Lisa Mitchell, M.A. – Sexuality Instruction and ASD
• Leslie Sinclair, M.S., CCC-SLP, BCBA - Joint Attention and the Development of Effective Communication

Find out more about the speakers and topics at http://www.researchautism.org/news/conference/speakers/index.asp.

Location: The Westin Arlington Gateway, 801 N. Glebe Road, Arlington, VA 22203
Date: Friday, October 26 & Saturday, October 27, 2007
Cost: Registration is $50 for one day and $90 for both days before September 25, 2007. On September 26, 2007, fees will increase to $75 for one day and $125 for both. After October 18, the registration Web site will close and registrations will only be accepted by fax, mail, or in person on the day of the conference. Fees are waived for persons with autism and RUN FOR AUTISM participants. Scholarships are available on a case-by-case basis. Please contact OAR for more information.

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Virginia Triathlon Series and OAR announce the TRI FOR AUTISM

On December 1, 2006, the Virginia Triathlon Series (VTS) announced that it had selected OAR as the first official charity in the history of the series.  As a result, OAR has expanded its highly successful RUN FOR AUTISM to the sport of triathlon (which encompasses swimming, cycling, and running). Introduced in 2005, the VTS has become widely popular on the East Coast. Almost 5,000 athletes competed in 13 races across Virginia, from the Tidewater to the Blue Ridge Mountains, in 2006.

Series Race Director Greg Hawkins and RUN FOR AUTISM Director Doug Marocco came up with the idea for the TRI FOR AUTISM.  Marocco, an elite triathlete himself, saw it as a natural addition to the RUN FOR AUTISM. 

Hawkins wasn’t as familiar with charity running programs, but after attending OAR’s Runners’ Recognition Dinner the night before the Marine Corps Marathon last year and visiting OAR’s Finish Line tent on race day, he was sold on the idea. “The spirit and sense of purpose of the OAR runners I met was incredible. We’re hoping to bring those same qualities to our charity program and are delighted to have autism as our cause and OAR as our special charity. There is an alarming increase in the number of children being diagnosed with autism today. We sincerely believe in the value of the research that OAR does,” says Hawkins.

Hawkins expects participation in VTS to go up by about 40 percent in 2007, an increase he describes as “phenomenal.” He adds that eight people have signed up for the TRI FOR AUTISM so far. “We are really excited about the response we have gotten from the triathlon community.”

Competing on Ben’s Behalf

The first respondent was Russ Stockton, a triathlete who started doing VTS events in 2006. He participated in the Angels Race on April 15 in Lynchburg, Virginia.

Russ Stockton

Stockton’s son, Ben, 6, was diagnosed with autism in January of 2004. “That day changed our lives forever,” says Stockton. “My wife, Beth, and I embarked on a search for the best possible treatment.” That has not been easy since insurance does not cover the cost. But, he explains, “thanks to the help of prayers, family, and the generosity of all the people that participated in our fundraisers, we somehow have managed to keep our house and not had to move.”

Today, Ben has graduated from the Blue Ridge Autism Center (BRAC) and is attending kindergarten at a public school in a regular classroom with an aide. “He is performing above average and fast becoming indistinguishable among his peers. Early intervention at BRAC was the key to Ben's success,” Stockton says.

When this article was being written, Stockton had already raised $2,760 for OAR, surpassing the $2,500 goal he initially set.

Drink Coffee and Support the TRI FOR AUTISM

The new TRI FOR AUTISM has brought more than triathletes. It has already produced a sponsor. Julia Peck is a triathlete, having competed for more than 18 years.  When Peck saw the information about the TRI FOR AUTISM on the VTS Web site, she immediately contacted OAR to see how her company could support the cause.

As the president of World Bean Roasthers in Culpeper, Virginia, Peck is delighted to be sponsoring the Culpeper Sprint Triathlon, which will take place on August 5, 2007. “I was so happy to hear about the TRI FOR AUTISM because one of my best friend’s sons has autism. I have known him since he was 4 or 5. He’s an adolescent now and a gift from heaven. It’s fun spending time with him and his mother.”

Peck says that her company will donate a percentage of all sales made online (through the company Web site, www.worldbeanroasthers.com) or offline from now until the end of the VTS race season, October 6, 2007, to OAR. “I’d like to start by giving 5 percent of all total coffee bean sales during that period. My personal contributions alone will never be enough to fund anyone's research. I hope through sales of good specialty coffee, we can make a bigger contribution. It is alarming that autism is on the rise. I do not understand that and we all need to. OAR funds this type of research so that we can all be better educated and sensitive to the needs of families that have a member with autism.”

For information on the Virginia Triathlon Series, visit www.setupevents.com. To find out more about the TRI FOR AUTISM please see www.researchautism.org/news/run/tri/. To order coffee and support OAR, go to www.worldbeanroasthers.com.

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Four Friends Take to the Trail to Raise Money for OAR

“Mother Nature decided to add a new twist to the day as we set out again - rain. South of Thornburg Station, the trail is in the hands of the Cuyahoga Valley National Park and changes from asphalt to crushed limestone. This is usually no big deal, but the rain made the trail a little soggy and therefore harder to pedal on. But pedal on we did. After a quick stop at the Canal Visitor Center, we continued on past Wilson's Mill and the Frazee House. At some point during the ride through the Pinery Narrows, the rain stopped, much to our chagrin.”

Dave Hayslip writing about the 2006 Towpath Trail Expedition

In 2004, Dave Hayslip discovered the Ohio & Erie Canal Towpath Trail, which will  ultimately run over 100 miles from Cleveland to New Philadelphia, Ohio. He was immediately fascinated with its recreational possibilities but even more so with its history. “It’s actually been around for almost 200 years but has recently been rehabilitated into a recreational opportunity, starting in the Cuyahoga Valley National Park,” Hayslip explains. “It mostly follows the original route of the Ohio & Erie Canal, which ceased to exist as a transportation route after the Flood of 1913.”

Dave Hayslip, Jeremy Varner, Vince Morber, and Paul Waltz

Hayslip set up a Web site dedicated to the trail and has spent many hours with friends exploring it. In 2005, Hayslip and three friends, Paul Waltz, Jeremy Varner, and Vince Morber, set out on their first trail expedition by bike. Following its success, they decided to make it an annual event.

On October 28, 2006, the four friends took to the trail again, riding as much of the 100-mile trail as they could over two days. This year, they dedicated their ride to OAR. Through their fundraising efforts, the four bikers raised more than $3,000. Hayslip, whose son Connor, 4, was diagnosed with autism in 2004, explains that friends told him about OAR, “A former co-worker of mine has two children with autism and her husband participated in the RUN FOR AUTISM. I asked them for a recommendation then I looked OAR up and decided that they were right. I had hoped to raise $1,000 through the fundraiser but we got over three times that! It helped that it was such a worthy cause and we all participated in the fundraising effort. My wife helped out too. It helps that we both are nurses and know a lot of doctors!”

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Other Voices Brings broadway Performers to the STage for OAR

On June 4, 2007, the curtain will go up on the latest Other Voices performance, a cabaret show in the heart of New York’s theater district that benefits OAR. When it rises, the audience should be prepared. This year’s performance is a “Best Of” show, bringing back performers who have participated in past years. As of press time, the organizers had booked two of the three performers, and they will entertain the socks off of everyone in the theater.

Donna McKechnie is a Tony Award-winning singer and dancer best known for her work as Cassie in A Chorus Line. She’s starred in many Broadway musicals, created her own one-woman shows, and worked in television and the movies. She’s worked with Bob Fosse, Michael Bennett, and Gwen Verdon, among others.

Kristine Zbornik was hailed by one critic as  “one of today’s comic genius’…After all, who else can fuse Ethel Merman and a dead squirrel into something that makes no sense and still create magic?” while The New York Daily News called Kristine a “madcap mix of Ethel Merman, Bette Midler and Lucille Ball.” Zbornik’s original and zany cabaret show recently won the 2007 Bistro Award for Best Musical Comedy.

Begun 11 years ago as a fundraiser for autism and a vehicle to showcase emerging Broadway performers, Other Voices has supported OAR since OAR’s founding in 2001. John Maltby, who has an adult son with autism, and his wife, Jan Maltby, created the show. Jan is a founding member of Shotgun Productions, which is a not-for-profit theatrical production company dedicated to showcasing emerging artists through the development of new works. John was the president of the Autism Society of Manhattan at the time Other Voices began.

“John has been a supporter since OAR started,” explains OAR Board member Bill Donlon, who is the chair of Other Voices this year. “We are grateful for the Maltbys’ support through Other Voices and we look forward to being in the audience on June 4.”

So bring your socks and prepare to lose them at this high-energy performance. To purchase tickets or to find out more, contact Shotgun Productions at (212) 689-2322 or visit OAR’s Web site at http://www.researchautism.org/news/otherevents/index.asp.

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