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The Paradox of Giftedness and Autism The Paradox of Giftedness and Autism Packet of Information for Families Megan Foley Nicpon Susan G. Assouline Nicholas Colangelo Matthew O’Brien The Connie Belin & Jacqueline N. Blank International Center for Gifted Education and Talent Development The University of Iowa College of Education The University of Iowa Belin-Blank Center The Paradox of Giftedness and Autism The Paradox of Giftedness and Autism Packet of Information for Families Megan Foley Nicpon, Susan G. Assouline, Nicholas Colangelo, Matthew O’Brien We gratefully acknowledge the Messengers of Healing Winds Foundation for its support in the creation of this Packet of Information for Families. We acknowledge the students and families who participate in the Belin-Blank Center’s Assessment and Counseling Clinic. We obtained invaluable information from parents, which has been critical to the development of the recommendations that comprise this Packet of Information for Families. © 2008, The University of Iowa Belin-Blank Center. All rights reserved. This publication, or parts thereof, may not be reproduced in any form without written permission of the authors. The University of Iowa Belin-Blank Center Purpose This Packet of Information for Families (PIF) was developed for parents whose children are identified as both gifted/ talented and on the autism spectrum, or twice-exceptional. Parents of twice-exceptional children often search for appropriate and challenging enrichment programs for their child, but the dearth of information available about how best to prepare for this experience can make the process overwhelming. In the past three years, the Belin-Blank Center’s Assessment and Counseling Clinic has developed clinical and research expertise in working with gifted students who have been diagnosed with an autism spectrum disorder (ASD). As a result of this focus, we are able to offer experience-based information and recommendations for parents of twice-exceptional children. The purpose of PIF is to provide recommendations for parents that will lead to a positive experience for their twice-exceptional students who participate in specialized programs for gifted/talented students. At the Belin-Blank Center, we have residential programs for junior high and high school students, and non-residential programs for elementary students. Recommendations for preparing your child vary depending on the type of program and age of the student; therefore, some of the information provided in PIF may not be applicable to your specific situation. To help navigate through this process, we have provided a figure in Section II that outlines specific issues related to residential programs and/or non-residential programs. We hope that PIF provides support and guidance to parents who are often in situations of having to advocate for their twice-exceptional child. PIF is designed to complement the Packet of Information for Professionals, (PIP). Originally developed in 2007 (and revised in 2008) by Drs. Susan Assouline, Megan Foley Nicpon, and Nicholas Colangelo, and Mr. Matthew O’Brien, PIP offers recommendations for administrators, educators, and residential staff of university-based programs that are designed to optimize twice-exceptional students’ experiences in specialized programs for gifted/talented students. In PIP, professionals are provided with various accommodations related to areas of strength and growth commonly observed in gifted students with ASD. These accommodations are meant to assist professionals in structuring an experience that is as successful as possible for gifted students with ASD. Structure of PIF Section I of PIF introduces general information related to both giftedness and ASD. This section is followed by Section II, which focuses on helping families prepare their twice-exceptional student to attend a summer program for gifted students. Although this section focuses on summer programs at the Belin-Blank Center, the information provided can be applicable to other summer programs for gifted/talented students, although the program structure and accommodations available may not be the same. In order to maximize the student’s experience, we have tried to identify multiple ways to effectively accommodate the complex learning and social needs of students who are gifted and also have ASD. 2 The Paradox of Giftedness and Autism 3 To Families of Twice-Exceptional Students: As the director of the Belin-Blank Center, I take great pride in the programs that we offer gifted students. Our summer programs bring together children and adolescents from a variety of geographic regions and backgrounds; however, they all share exceptional potential and a desire for opportunities to learn and be challenged. Students want to be with other kids who have similar values and abilities so that they can just “be themselves.” As you know from experience, parents also want their children to have such experiences. For a gifted student with autism spectrum disorder (ASD), the possibility of experiencing a special program for gifted students may not be as likely because ASD presents a number of challenges that could make such special academic experiences unrealistic. We want to change this so that gifted students with ASD are not only encouraged to participate, but also have a fulfilling, positive experience. The Belin-Blank Center’s motto is “nurturing potential/inspiring excellence.” We don’t have qualifiers on this motto. It has always been our driving force to minimize barriers—whether economic, ethnic, gender, or geographic—that would interfere with bright students enjoying a quality special academic experience. Students with ASD have social and cognitive characteristics that can make being away from home for either a commuter or residential program quite challenging. It is our task to minimize these potential barriers. In partnership with the Messengers of Healing Winds Foundation, we have developed this Packet of Information for Families (PIF) to assist families in preparing their child for a special learning opportunity. Why? Simple: we want specialized programs to be accessible to these young gifted people. We want to minimize participation barriers everywhere. We will be saying “yes” to students who have not readily heard that word. We all get to nurture and inspire as well as be inspired. Thank you. Nicholas Colangelo, Director Belin-Blank Center The University of Iowa Belin-Blank Center4 ContentS Section I: A Paradox of Strengths and Difficulties A Brief History of Giftedness 7 What Model of Giftedness Do University-Based Programs Use? 8 Who Is the Gifted Student with an Autism Spectrum Disorder (ASD)? 8 How Can Gifted Students Also Have ASD? 9 Comprehensive Assessment — Why Is It Important? 9 Case Study 10 Section II: Preparing Your twice-exceptional Student for Summer Gifted/talented Programs Considerations for Students Attending Residential and Non-Residential Programs 13 Disclosure of Information to Staff 13 Discussing the Program with Your Child 14 Taking a Proactive Approach 14 Planning for Social Activities 14 Avoiding Potential Behavior Problems 15 Additional Considerations for Students Attending Residential Programs 15 Medications 15 Unstructured Time, Roommates, and Routines 16 Program Orientation 16 Additional Considerations for Students Attending Non-Residential Programs 16 Arriving to and Leaving from Classes 16 Breaks 16 Social Stories as an Intervention 17 Introduction to Summer Programs 17 Checking My Schedule 18 Living in the Residence Halls 19 Eating in the Cafeteria 19 Taking Care of Myself 20 Personal Space 20 In the Classrooom 20 When I am Upset 20 Finding Someone to Help 21 The Paradox of Giftedness and Autism 5 What To Do When Your Child is Attending a Summer Program 21 After Summer Programs have Ended 21 Questions Parents May Have About Enrichment Programs for Gifted Students 21 Summary of Preliminary Gifted/ASD Research Conducted at The ACC 24 Conclusion to Sections I and II 25 References 25 Appendix A Marland Report (1972) Definition of Giftedness 27 The Thirteen IDEA Disability Categories 27 Explanation of Federal Protections for Students with Disabilities 28 Explanation of Individualized Educational Programs (IEPs) 28 Explanation of a 504 Plan 28 Appendix B The Belin-Blank Center’s Assessment and Counseling Clinic 29 Appendix C Diagnostic Criteria for Autism Spectrum Disorders (ASD) 30 Appendix D Optional Student Disclosure Sheet 32 Appendix e Web Sites for Parents with a Child with ASD 33 Appendix F Books on Asperger Syndrome/High Functioning Autism 34 The University of Iowa Belin-Blank Center The gifted student who is also diagnosed with one of the autism spectrum disorders (ASD) has many behaviors, skills, and characteristics that are paradoxical in nature. In other words, there are aspects of these areas that are extraordinarily well developed—especially academically—yet, within the same broad area, there are other aspects that, relative to the academic strength, are significantly weak and may create a situation where the regular classroom setting may not be optimal for learning. Accommodations can be used to ensure that the student’s learning experience is commensurate with his or her ability. 6 The Paradox of Giftedness and Autism SeCtIon I A Paradox of Strengths and Difficulties A Brief History of Gifted education For more than three decades, the federal definition of giftedness (see Appendix A) has served as the dominant basis for the definition of giftedness that is used in school settings in most states. This definition came from the first national report on gifted education, Education of the Gifted and Talented, which was a product of an effort initiated in 1972 by U.S. Commissioner of Education, S. P. Marland. The report, often referred to as the Marland Report, is credited with giving gifted education national stature by emphasizing the need for programming as well as by suggesting that a failure to meet the academic needs of gifted students would place them at risk for psychological damage. However, validation of gifted students’ needs for specialized programming was the extent of the report’s impact, because it did not include legislation leading to significant rights for gifted students, their parents, or their teachers. Shortly after the release of the Marland Report, gifted education programs appeared throughout the nation’s schools. Many of the programs were developed according to the Enrichment Triad Model (Renzulli, 1976), which is the core of Renzulli’s Schoolwide Enrichment Model (SEM). Because an enrichment model aims to provide a comprehensive menu of challenging opportunities, it is understandably attractive to many educators who want to provide a broad spectrum of gifted- education opportunities to their students. In addition, most enrichment programs use an identification system that features above-average achievement (based on grade-level tests), creativity, and motivation. The first step to participation in an enrichment-focused program often is an evaluation of the student’s performance on a nationally-normed, grade-level achievement test. The next step often involves the student taking a group-administered ability test, such as the Cognitive Abilities Test (CogAT). Although an enrichment model is an effective intervention for many gifted students, ironically, for gifted students with a disability, the model’s emphasis on above-average achievement and demonstrated motivation may inadvertently exclude from participation in the school’s gifted program those gifted students who have learning difficulties or social-skill deficits. An enrichment model also has resulted in a myth that giftedness is very general in its nature. Although we are not sure how this myth originated, even in the most respected school systems its impact is obvious by the global or general approach of gifted-student identification systems and subsequent programming. While scholars have demonstrated that most individuals are not equally talented in the variety of talent areas that are typically addressed in educational settings (e.g., verbal, quantitative, musical, and leadership; see the Marland Report definition of giftedness in Appendix A), schools continue to base entry into gifted education programs on global or composite standardized test scores. Because of these practices, many do not fully understand the enormous diversity of talent that exists among gifted students. For example, educators may assume that all gifted students love school, read well, process information quickly, or are able to complete work or learn new material independently. Professionals who adhere to this particular myth usually are not open to the possibility that a student can be gifted even though he/she does not process information quickly. These are often the same people who believe that gifted students do not require any special intervention because they will “make it on their own.” 7 The University of Iowa Belin-Blank Center The description of enrichment programs begs the following question: Is the generally gifted approach the only way to find and develop programs for gifted students? There is another system for gifted education programming that has existed since the early 1980s, when programs for high-ability students first were offered through university settings. Typically presented as a benefit of participation in university-based talent searches (Lupkowski- Shoplik, Benbow, Assouline, & Brody, 2003), these programs are almost entirely outside of the K–12 domain. The talent-search model for discovering academic talent is a two-step process, and the first step, as with an enrichment model, often emanates from the student’s performance on a nationally-normed grade-level achievement test; however, this is the only point at which the talent-search programs resemble the enrichment programming. Therefore, enrichment usually serves as the basis for the majority of pull-out programs for gifted students in the K–12 setting and university-based programs (which are founded on a talent-search model) operate in a parallel gifted world. Because these two types of programs rarely intersect, it is not uncommon for students to qualify for university-based programs, yet not qualify for their school’s gifted program. What Model of Giftedness Do University-Based Programs Use? Many universities offer pre-college programming and most programs for pre-college students are grounded in the university-based talent search model. As mentioned, one consequence of the parallel nature of the school-based enrichment programming and university-based talent-search programs is that students in university-based programs often are NOT identified for their school’s gifted education programming. In fact, many of students who have been assessed through the Belin-Blank Center’s Assessment and Counseling Clinic (see Appendix B) have not been identified for their school’s gifted education program. For many students—and especially for gifted students with a disability—attending a university-based program may be the first time that their high academic needs are being met. In general, classes that are part of university- based programs are designed to enhance a specific content area, and students are encouraged to participate in classes that will develop their strengths. These classes should not be viewed as a way to remediate an academic area that is a weakness. The students with a diagnosis on the autism spectrum who are participating in university-based programs can be (and have been) enrolled in any of the classes (e.g., writing, math, science, or visual arts). Who Is the Gifted Student with an Autism Spectrum Disorder (ASD)? While only a small minority of gifted students are considered twice-exceptional, or possessing gifts/talents and a disability (e.g., Attention- Deficit/Hyperactivity Disorder (ADHD), learning disability, etc.), an even smaller portion are thought to be both gifted/talented and have a diagnosis on the autism spectrum. For this group of students, Bashe and Kirby (2001, p. 364–365) state that the “most pressing problem” is that “their emotional and behavioral challenges are considered ‘side effects’ of being unusually bright, rather than the manifestations of a neurological disorder.” This occurs even though Because twice-exceptional students are apt to be misunderstood, resulting in students who remain under-identified and, consequently, under-served, it is an acute necessity for professionals to be aware of the unique needs of these students. 8 The Paradox of Giftedness and Autism autism is considered to have the best empirically based, cross-national set of criteria for diagnosis (Volkmar & Klin, 2005). As a parent of a gifted student with ASD, you most likely are familiar with the definitions associated with various disorders that make up the autism spectrum, including Autistic Disorder, Asperger Syndrome, and Pervasive Developmental Disorder NOS (see Appendix C for the DSM-IV-TR diagnostic criteria used to diagnose ASD). The vast amount of literature available to parents thoroughly documents the social, communication, and behavioral difficulties