Autism AutismoStanley L. SwartzSelected Papers - Documentos Selectos English and / y Espaol With Contributions and Translation by Con Contribuciones y Traduccin deLilia G. Lpez Arriaga, Mara Esther Vzquez-Garca, and Carime Hagg Hagg

Foreword by Prefacio porMarco A. Villa Vargas

Queda prohibida la reproduccin total o parcial de la presente obra sin expreso consentimiento del editor Autism / Autismo 2004, Stanley L. Swartz D.R. 2005 por Innovacin Editorial Lagares de Mxico, S.A. de C.V. Av. Lomas Verdes No. 480 102 A Fracc. Lomas Verdes Naucalpan, Estado de Mxico C.P. 53120 Telfono: (55) 5240-1295 al 98 email: editor@lagares.com.mx Diseo de Portada: Enrique Ibarra Vicente Foto portada: Modelos profesionales Jos Enrique y Jos Roberto Surez Ibarra ISBN: 970-773-011-0 Primera edicin abril, 2005 Segunda edicin agosto, 2007 IMPRESO EN MXICO / PRINTED IN MEXICO

PrefaceThis important book by Dr. Stanley L. Swartz and his Mexican colleagues collects five papers on autism and its treatment. The major characteristics of autism are described and two promising treatment techniques, direct instruction in reading and writing and positive behavior support, are evaluated. A speech on the inclusion of children with autism and other children with disabilities is also included. This book is unique in that each paper appears in both English and Spanish and should be of interest to professors, psychologists, and families of children with autism. The book represents a valuable resource for international collaboration. Of particular interest is the position on inclusion and the collaboration of professionals, with a focus on teachers. Inclusion as a practice is more advanced in the United States and it is my opinion that much that is presented here serves as an outline for what must take place to make inclusion a reality in Latin America. Progress in Latin America will only come when inclusion is viewed as a worthy and respectful action that enriches the lives of both children with disabilities and children who are served in general classrooms. My own interest and work on inclusion is informed by this work and the problems faced in Mexico on the issue of inclusion. Integration in educational settings is problematic for a number of reasons, including insufficient budget to support the work, and teacher training for special and regular teachers that is separate and creates a negative attitude regarding the impact of children with disabilities being served in regular schools and classrooms. Since the problem of the integration of various indigenous populations also remains an ongoing problem, the inclusion of those with disabilities remains a distant goal. The politics of this situation is such that there is little recognition of the obligation, let alone any commitment or conviction regarding the importance of creating an inclusive school and in turn an inclusive community. Under these circumstances, the disabled population will continue to be a disenfranchised group in our society. Ochoa (1998) has identified an important obstacle to efforts to include the disabled. That is that those in positions of political influence continue to articulate the negative impact on various institutions that children with disabilities are

likely to have. That their very presence might disrupt the work of professionals and adversely impact others is a tenet that must be set aside. Of particular importance to this discussion is the information presented on the inefficiency of a dual system of education; one for general education and a parallel one for special education. Swartz is particularly forceful in identifying the reasons that this system is unsuitable and the need to create a single, unitary system that is both more effective and fair. In the creation of this single system the attitudes towards children with disabilities on the part of society in general are a primary focus. Much of the history of exclusion can be traced to the medical profession and its consideration of disability as a disease. Segregation was most likely a spontaneous result of the usual procedure of treatment delivered in isolation. Rejection of this model and using the work of Foucault, Castel, Goffman and others will be necessary to impact both overall treatment design and the likely inclusion of the disabled in the various programs and the resultant benefits of our social and educational institutions. Also of interest is the intellectual movement in recent years that considers policy and practice that attempt to maintain both social and ideological control of how we perceive of and provide services to individuals with disabilities. This new wave can be summarized in the slogan used by the disability rights movement; "nothing about us, without us." It is only with this shift of thinking that we can support the emergence of individuals with disabilities as full members in our society with all of the rights and privileges of others. The book also follows the emergence of positive behavior support as an alternative treatment to the more traditional application of behavior modification. Rather than using the traditional approach of manipulating consequences in behavior modification, positive behavior support is a teaching orientation with emphasis on teaching those behaviors necessary for an individual to be successful in school, home and community settings. The results of this work with children with autism are particularly notable and the work of the author and his colleagues in worthy of review and replication. The work described in this book on teaching reading and writing to children with autism is particularly noteworthy. Swartz is a pioneer in this field and has demonstrated considerable success in academic achievement for children who have historically achieved very little in usual academic environments. The connection between this achievement and the likely success of inclusion is clear from the work presented here. The lack of social behaviors in autistics is an obstacle to inclusion but so are the low levels of academic performance

and the ability to participate in the routines of the general classroom. It is clear that these academic abilities are an important instrument for social integration. Professors, specialists and parents will find much in this book to assist them in their work with children with autism. Behavioral techniques as well as methods of direct instruction included in these papers are well founded and carefully developed. In particular, teaching methods of reading and writing used by the author are available in other books where his technique is provided in detail. These specific books include two on reading, guided and shared reading, and one on writing, interactive writing, and all are recommended as sources of training to replicate the work described in the book. All of these resources cover the whole age spectrum, preschool to high school, and are used extensively in the United States in particular, and are also in Mexico and Chile. It is a valuable resource to the field for these papers to be collected and available in one book. Marco A. Villa

PrefacioEste importante libro del Dr. Stanley. L. Swartz y sus colegas mexicanos rene cinco documentos sobre autismo y su tratamiento. Las principales caractersticas del autismo se describen en este material as como dos prometedoras tcnicas de tratamiento, la instruccin directa en lectura y escritura y el apoyo conductual positivo, que se evalan cuando se presentan. Un discurso sobre la inclusin de nios con autismo y otros nios con discapacidades tambin estn incluidos. Este libro es nico debido a que cada documento aparece tanto en ingls como en espaol e interesa tanto a profesores universitarios como a psiclogos y familiares de nios con autismo. El libro representa una valiosa fuente de colaboracin internacional. El punto de vista de inclusin y la colaboracin de todos los profesionales, especialmente de los maestros, resulta particularmente interesante. La inclusin es una prctica ms avanzada en los Estados Unidos y es mi opinin que mucho de lo que se presenta aqu debera ser un plan para que la inclusin sea una realidad en Latinoamrica. El progreso en Latinoamrica se dar cuando la inclusin se vea como una accin valiosa y respetuosa que enriquezca la vida de los nios con discapacidades y de los nios que asisten a salones de clases regulares. Mi inters personal y el trabajo que he hecho en inclusin se informa en los documentos mexicanos que existen sobre el tema. La integracin en los escenarios educativos es problemtica por varias razones, incluyendo los presupuestos insuficientes que apoyan el trabajo y el entrenamiento de los maestros regulares y especiales como estrategias separadas que crean actitudes negativas ante el impacto de los nios con discapacidades atendidos en los salones de clases regulares. Desde el problema de la integracin de poblaciones indgenas que es ya un problema por s mismo, la inclusin de los nios con discapacidades sigue siendo una meta lejana. Las polticas en esta situacin siguen siendo tales que hay muy poco reconocimiento a la obligacin, por compromiso o conviccin, acerca de la importancia de crear salones incluyentes y por lo tanto, comunidades incluyentes. Bajo estas circunstancias, la poblacin con discapacidades continuar siendo un grupo segregado de nuestra sociedad.

Ochoa (1998) ha identificado un obstculo importante a los esfuerzos para incluir a los discapacitados. El hecho de que las personas con una influencia poltica continen argumentando sobre el impacto negativo en las instituciones de los nios con discapacidades. Su presencia podra impedir el trabajo de los profesionales y podra tener un impacto negativo en otros como un esfuerzo colateral. Una discusin de particular importancia es la informacin que se presenta acerca de la ineficiencia de los sistemas duales de educacin: una educacin general y la paralela educacin especial. Swartz es particularmente fuerte para identificar las razones por las que este sistema no sirve y sobre la necesidad de crear un sistema nico y unitario que sea efectivo y justo. En la creacin de este sistema nico, las actitudes hacia los nios con discapacidades por parte de la sociedad general, es el principal foco de atencin. Mucha de la historia de la exclusin, podra reflejarse en la medicina y la consideracin de la discapacidad como una enfermedad. La segregacin es ms un resultado de los procedimientos usuales de tratamientos que se dan en aislado. El rechazo de este modelo utilizando el trabajo de Foucault, Castel, Goffman y otros ser necesario para impactar en el diseo general de tratamiento y en la posibilidad de incluir a los discapacitados en los diversos programas y los resultados beneficiosos en las instituciones sociales y educativas. Tambin resulta de inters el movimiento intelectual de los aos recientes que considera las polticas y la prctica que intentan mantener el control social e ideolgico de cmo percibimos y ofrecemos los servicios a los individuos con discapacidades. Esta nueva ola podra resumirse con el slogan utilizado por el movimiento de los derechos de los discapacitados: Nada que tenga que ver con nosotros, sin nosotros. Es slo mediante esta manera de pensar que podemos apoyar el hecho de que los individuos con discapacidades sean miembros plenos de nuestra sociedad con todos los derechos y los privilegios de los dems. Este libro tambin considera el uso del apoyo conductual positivo como un tratamiento alternativo a las ms tradicionales formas de modificacin conductual. En lugar de utilizar un enfoque tradicional de manipulacin de las consecuencias en la modificacin conductual, el apoyo conductual positivo es una orientacin didctica con nfasis en la enseanza de las conductas necesarias para que un individuo sea exitoso en la escuela, en el hogar y en la comunidad. El resultado de este trabajo con nios con autismo es particularmente notable y el trabajo del autor y sus colegas de gran valor para su estudio y rplica.

El trabajo descrito en este libro acerca de la enseanza de la lectura y la escritura a nios con autismo es particularmente valioso y de tomarse en cuenta. Swartz es un pionero en este campo y ha demostrado tener un xito considerable en sus logros acadmicos para los nios que han tenido poca experiencia acadmica en escenarios educativos. La conexin entre este logro y la posibilidad de incluir a los nios con discapacidades, se hace lgica con el trabajo presentado aqu. La ausencia de conductas sociales de los nios autistas es un obstculo claro para la inclusin pero tambin lo son los bajos niveles de ejecucin acadmica y su poca habilidad para participar en las rutinas generales del saln de clases. Es muy claro que estas habilidades son un instrumento importante para la integracin social. Los profesores universitarios, los especialistas y los padres de familia encontrarn en este libro muchas ideas tiles que les ayudarn en su trabajo con los nios con autismo. Las tcnicas conductuales y los mtodos directos de instruccin que se incluyen en este material estn bien fundamentados y se han desarrollado muy cuidadosamente. En particular, los mtodos directos para la enseanza de la lectura y la escritura que propone el autor y que estn disponibles en otros libros con ms detalle. Estos libros especficamente incluyen dos de lectura, la lectura guiada y la lectura compartida y uno sobre escritura, la escritura interactiva, que se recomiendan como fuentes de entrenamiento para replicar el trabajo que se describe en este libro. Todas estas fuentes abarcan todos los rangos de edades, desde preescolar hasta preparatoria, y se utilizan de manera extensa en los Estados Unidos, en Mxico y en Chile. Es un recurso valioso en el campo el tener todos estos documentos reunidos y disponibles en un solo libro. Marco A. Villa

AuthorStanley L. Swartz, Ph.D., is Professor of Special Education at California State University, San Bernardino. He is also Distinguished Professor in the Faculty of Human Sciences at the Universidad Autnoma de Baja California and Visiting Professor in the Education and Psychology Faculties of the Pontificia Universidad Catlica de Chile, the Universidad La Habana, the Universidad Nacional Autnoma de Mxico, and the University of California, Riverside. Dr. Swartz is the Director of the Autism Research Group, the Foundation for Comprehensive Early Literacy Learning, and President of the Redlands School in Mexico City. Dr. Swartz has written and contributed to more than twenty books and has presented more than one hundred professional papers. He is a Fellow of both the American Association on Mental Retardation and the American Orthopsychiatric Association. (www.stanswartz.com)

ContributorsLilia G. Lpez Arriaga is Professor of Human Sciences at the Universidad Autnoma de Baja California (UABC), Mexicali, Mxico. She is also the Associate Director of the Imperial Valley County Program for Autistic Children. She has been working in the field of autism and pervasive developmental disabilities for more than ten years with concentration on treatment and the training of special education teachers and psychologists. She has a Master's Degree in Special Education from California State University, San Bernardino where she completed an internship at the University Center for Developmental Disabilities. Mara Esther Vzquez-Garca is Professor of Human Sciences at the Universidad Autnoma de Baja California (UABC), Mexicali, Mxico, where she is also the Coordinator of the Master's Degree in Special Education. She is the Associate Director of the Imperial Valley County Program for Autistic Children. She served an internship at the University Center for Developmental Disabilities while completing her Master's Degree in Special Education at California State University, San Bernardino. She has worked in the field of special education with particular emphasis in autism for more than ten years.

Carime Hagg Hagg is Professor in the Psychology Faculty at the Universidad Nacional Autnoma de Mxico and the Principal of the Redlands School in Mexico City. She was trained as a Literacy Coordinator by the Foundation for Comprehensive Literacy Learning and is the Coordinator in Mexico for Enseanza Inicial de la Lectura y la Escritura (EILE). She is an educational psychologist and has been a teacher for more than fifteen years. Marco A. Villa Vargas is Professor of Human Sciences at the Universidad Autnoma de Baja California (UABC), Mexicali, Mxico and a former Director of the School of Human Sciences. He is President of the Instituto de Atencion Psicolgica y Asesora para las Discapacidades del Desarrollo and a principal of the International Network for Inclusion of Individuals with Disabilities.

AutorDr. Stanley L. Swartz es Profesor de Educacin Especial en la Universidad Estatal de California en San Bernardino. Tambin es Maestro Honorfico en la Facultad de Ciencias Humanas en la Universidad Autnoma de Baja California y profesor visitante de las Facultades de Educacin y Psicologa en la Pontificia Universidad Catlica de Chile, la Universidad de La Habana, la Universidad Nacional Autnoma de Mxico, y la Universidad de California, en Riverside. El Dr. Swartz es el Director del Grupo de Investigacin en Autismo y de la Fundacin para la Lecto-escritura Inicial y Presidente de la Escuela Redlands en la ciudad de Mxico. El Dr. Swartz ha escrito y contribuido en ms de veinte libros y ha presentado ms de cien documentos profesionales. Es miembro distinguido de la Asociacin Americana para el Retraso Mental y la Asociacin de Ortopsiquiatra Americana. (www.stanswartz.com)

ColaboradoresLilia G. Lpez Arriaga es Profesora de Ciencias Humanas en la Universidad Autnoma de Baja California (UABC), Mexicali, Mxico. Tambin es Directora Asociada del Programa para Nios Autistas en el Valle Imperial, California. Ha estado trabajando en el campo del autismo y las discapacidades imposibilitantes del desarrollo por ms de diez aos con un enfoque especial en el entrenamiento de los maestros de educacin especial y psiclogos. Tiene una maestra en Educacin Especial por parte de la Universidad Estatal de California, San Bernardino, donde hizo un internado en el Centro Universitario para las Discapacidades del Desarrollo. Mara Esther Vzquez Garca es Profesora de Ciencias Humanas en la Universidad Autnoma de Baja California (UABC) Mexicali, Mxico, donde tambin es Coordinadora de la Maestra en Educacin Especial. Es Directora Asociada del Programa para Nios Autistas en el Valle Imperial, California. Realiz un internado en el Centro Universitario para las Discapacidades del Desarrollo mientras concluy su Maestra en Educacin Especial en la Universidad Estatal de California en San Bernardino. Ha trabajado en el

campo de la Educacin Especial con un particular nfasis en autismo por ms de diez aos. Carime Hagg Hagg es Acadmica de la Facultad de Psicologa de la Universidad Nacional Autnoma de Mxico (UNAM) y es la Directora de Redlands School en la ciudad de Mxico. Se ha entrenado como Coordinadora de Lecto-escritura por la Foundation for Comprehensive Early Literacy Learning y es la Coordinadora en Mxico de Enseanza Inicial de la Lectura y la Escritura (EILE). Es psicloga educativa y ha sido maestra de grupo por ms de quince aos. Marco. A. Villa Vargas es Profesor de Ciencias Humanas en la Universidad Autnoma de Baja California (UABC), Mexicali, Mxico y fue director de la Facultad de Ciencias Humanas. Es Presidente del Instituto de Atencin Psicolgica y Asesora Psicolgica para las Discapacidades del Desarrollo y Director de la Red Internacional para la Inclusin de Individuos con Discapacidades.

Table of Contents / ndicePreface Prefacio ............................................................................................... 5 ............................................................................................... 9

Introduction ............................................................................................. 19 Introduccin ............................................................................................ 21 Chapter 1 Autism and Its Treatment .................................................. 23 Captulo 2 Autismo y Su Tratamiento ................................................. 47 Chapter 3 Captulo 4 Chapter 5 Inclusion of Children with Disabilities in Regular School Programs .............................................................. 71 Inclusin de Nios con Discapacidades en Programas de Educacin Regular ....................................................... 83 Working Together: A Collaborative Model for the Delivery of Special Services in General Classrooms ...................... 95

Captulo 6 Trabajo Conjunto: Un Modelo Colaborativo para los Servicios Especiales en Salones de Clases Regulares ................................... 109 Chapter 7 Supporting Literacy Learning for Children with Autism ... 123

Captulo 8 Apoyo al aprendizaje de la Lectoescritura para Nios con Autismo .................................................. 139 Chapter 9 Using Positive Behavior Support in a Home-based Program for Children with Autism ................................... 155

Captulo 10 El uso del Apoyo Conductual Positivo desde el hogar en Nios con Autismo ..................................................... 163

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IntroductionThis book collects in one volume five papers by Dr. Stanley L. Swartz with contributions by his Mexican colleagues, Lilia Lpez, Esther Vzquez and Carime Hagg, on autism and its treatment. Because each paper was designed to stand alone, some duplication of content was unavoidable to maintain continuity. Each paper was delivered in English at conferences in the United States, Mexico, and Cuba and translated to Spanish by the contributors. The dual language format of the book is designed to facilitate international communication and collaboration. The first paper, Autism and Its Treatment, in Chapters 1 and 2 presents the definition of autism and various diagnostic criteria. Positive behavior support is reviewed as a treatment alternative and some important new work using literacy learning to increase communication skills is introduced. The importance and value of parent involvement and inclusion and their impact on successful programs are also considered. This paper was originally presented as a keynote address at the International Symposium on Autism and Down Syndrome in Havana, Cuba. The second paper, Inclusion of Children with Disabilities in Regular School Programs, in Chapters 3 and 4 considers the important issue of the efficacy of special education that is separate or isolated. Evidence for the value and necessity of including children with disabilities in the mainstream of public education is discussed and the case against exclusionary programs is presented. This paper was originally presented in the United States as a keynote address at the California Association of Directors of Special Education. An earlier version of this paper was published as a chapter in Sujeto, educacin especial e integracin, Volumen I (Jacobo, Villa & Vara) (Eds.), Universidad Nacional Autnoma de Mxico, Iztacala. The third paper, Working Together: A Collaborative Model for Delivery of Special Services in the General Classroom, in Chapters 5 and 6 outlines a model of collaboration for the successful inclusion of children with special needs in the regular classroom. Teacher roles and shared teaching methods as well as the inevitable questions of fairness are all addressed. This paper was originally presented at the Conference of the California Reading Association and the Utah Literacy Conference. The fourth paper, Supporting Literacy Learning 19

STANLEY L. SWARTZ for Children with Autism, in Chapters 7 and 8 reviews scientific research on reading and how it can be applied in literacy learning for children with autism. This study reports the success of specific teaching methods used with children of various ages and levels of disability. This paper was originally presented at the International Conference on Autism in Stockholm, Sweden. Original sources for much of this material is published in Enseanza inicial de la lectura y la escritura (Swartz, et al.), Editorial Trillas and Guided Reading and Literacy Centers (Swartz, et al.), Dominie Press. The fifth and final paper, Using Positive Behavior Support in a Homebased Program for Children with Autism, in Chapters 7 and 8 reports the use of positive behavior support as a treatment technique in the home that supports inclusion in the schools as well as involvement in the community. This program is one of international collaboration (United States and Mexico) and focuses on the importance of training parents to ensure their effective involvement in programs for their children. This paper was originally presented at the National Conference on Positive Behavior Support. Original source material for this paper was published in Sujeto, educacin especial e integracin, Volumen III, (Jacobo, Villa & Vara) (Eds.), Universidad Nacional Autnoma de Mxico, Iztacala. All of this work was prepared with the support of my able research assistant, Cathleen Geraghty. My thanks to her.

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IntroduccinEste libro rene en un volumen cinco documentos por el Dr. Stanley L. Swartz con contribuciones de sus colegas mexicanos, Lilia Lpez, Esther Vzquez y Carime Hagg, sobre el autismo y su tratamiento. Cada documento se hizo para leerse de manera independiente, resulta inevitable que se dupliquen algunos contenidos que son necesarios para mantener la continuidad. Cada documento se hizo en ingls en Congresos en los Estados Unidos, Mxico y Cuba y se han traducido al espaol por los participantes. El formato bilinge de este libro est diseado para facilitar la comunicacin internacional y la colaboracin. El primer documento, Autismo y su tratamiento, en los captulos 1 y 2 presenta la definicin de autismo y varios criterios para el diagnstico. El apoyo conductual positivo se revisa como una alternativa de tratamiento y se presentan los nuevos trabajos que emplean el aprendizaje de la lecto-escritura para incrementar las habilidades comunicativas. La importancia y el valor de la participacin de los padres y la inclusin y su impacto en programas exitosos tambin se consideran. Este documento se present originalmente como una Conferencia Magistral en el Simposium Internacional de Autismo y Sndrome de Down en la Habana Cuba. El segundo documento, la Inclusin de nios con discapacidades en programas educativos regulares en los captulos 3 y 4 considera el factor tan importante de la eficacia de la educacin especial como un aspecto separado y aislado. Se discute la evidencia sobre el valor y la necesidad de incluir a los nios con discapacidades en la educacin regular pblica y se presenta el caso en contra de programas de exclusin. Este documento se present originalmente en los Estados Unidos como una Conferencia Magistral en la Asociacin de Directores de Educacin Especial de California. Una versin previa de este documento se public como un captulo en Sujeto, educacin especial e integracin, Volumen I (Jacobo, Villa & Vara) (Eds.), Universidad Nacional Autnoma de Mxico, Iztacala. El tercer documento, Trabajo conjunto: un modelo colaborativo para proporcionar servicios especiales en el saln de clases regular, en los captulos 5 y 6 describe un modelo de colaboracin para el xito en la inclusin de nios con necesidades especiales en el saln de clases regular. Los roles de los maestros y los mtodos de enseanza compartidos as como las cuestiones inevitables 21

STANLEY L. SWARTZ sobre justicia se consideran en este captulo. Este documento se present originalmente en el Congreso de la Asociacin de Lectura de California y en la Conferencia de Lecto-escritura de Utah. El cuarto documento, el Apoyo al aprendizaje de la lecto-escritura en nios con autismo, en los captulos 7 y 8 revisa la investigacin cientfica en la lectura y como puede aplicarse al aprendizaje de la lecto-escritura de los nios con autismo. Este estudio reporta el xito de mtodos especficos de enseanza utilizados con nios de diferentes edades y niveles de discapacidad. Este documento se present originalmente en el Congreso Internacional de Autismo en Estocolmo, Suecia. Las fuentes originales de la mayora de estos documentos estn publicados en Enseanza inicial de la lectura y la escritura (Swartz, et al.), Editorial Trillas y Lectura Guiada y Centros de Lecto-escritura (Swartz, et al.), Dominie Press. El quinto y ltimo documento El uso del Apoyo Conductual Positivo en un programa en el hogar para nios con autismo, en los captulos 7 y 8 es una tcnica conductual de apoyo positivo en el hogar que apoya la inclusin en las escuelas as como su participacin en la comunidad. Este programa es de colaboracin internacional (Estados Unidos y Mxico) que se enfoca en la importancia del entrenamiento de los padres para asegurar su participacin efectiva en programas para sus hijos. Este documento se present en el Congreso Nacional de Apoyo Conductual Positivo. La fuente original de este documento se public en Sujeto, Educacin Especial e Integracin, Volumen III, (Jacobo, Villa & Vara) (Eds.), Universidad Nacional Autnoma de Mxico, Iztacala. Todo este trabajo se prepar gracias al apoyo de mi muy capaz asistente de investigacin, Cathleen Geraghty. Mi agradecimiento a ella.

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Autism and Its TreatmentIntroductionPerhaps autism is the most mysterious of all of the developmental disabilities. We are not sure what causes this condition and we are also not sure what to do about it. It continues to be what we might call an orphan disability. No one takes responsibility for it and the resources for research and treatment are inadequate. We are also beset by individuals that prey on the concerns and anxieties of parents by peddling false promises and miracle cures. The challenge for the 21st Century will be to change these circumstances and give the attention to this puzzling and devastating disability that it deserves. Even if autism cannot be cured, there is a great deal more that can be done to understand it and to provide effective treatments. It is a telling statistic that the incidence of autism has virtually exploded. These data from California show that unlike other disabilities, such as cerebral palsy, epilepsy and mental retardation, where modest increases are seen consistent with population growth, autism has increased by more than 200% in the decade between 1987 and 1998. To what might this growth be attributed and what are the challenges to the profession to treat this disorder?

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STANLEY L. SWARTZ The important issues include definition and diagnosis, treatment, inclusion, and family involvement. Definition and diagnosis are important because there is still no universal agreement among professionals. Is autism a single syndrome or are there various conditions better conceptualized by similarities in presenting problems and treatment needs? Next, treatment of children with autism is both controversial and contentious. There are those who promise a cure for autism and others who say a cure is not possible. How can what is possible, and what is not, be determined? Because autism is primarily a social and communication disability we need to consider not only how they are treated but also where they are treated. Should children with autism be included in the mainstream of educational services or should they be provided for in special and separate settings? Does it matter? And last, how can families be involved in the treatment of children with disabilities generally, and children with autism specifically? Too often decisions are made and program designs developed without sufficient consideration to the issues of social validity for the family.

Definition and DiagnosisThe first issue to consider is the one of definition. Is the increase in autism attributable to a definition that is unclear or too broad or is there a causal factor that has produced the increase? We do not have general agreement on definition because some favor attempts to specifically define autism as a single, identifiable syndrome and others are comfortable with the general category of pervasive developmental disorders, where various diagnoses with similar characteristics are subsumed under an umbrella term. In the United States, the American Society for Autism has developed the definition used frequently. It should be understood however, that this group is composed of both professionals and parents and that the definition that they have developed is both scientific and political.Autism is a complex developmental disability that typically appears during the first three years of life. The result of a neurological disorder that affects the functioning of the brain, autism and its associated behaviors have been estimated to occur in as many as 1 in 500 individuals. Autism is four times more prevalent in boys than girls and knows no racial, ethnic, or social boundaries. Family income, life-style, and educational levels do not affect the chance of autisms occurrence. Autism interferes with the normal development of the brain in the areas of social interaction and communication skills. Children and adults with autism typically have difficulties in verbal and non-verbal communication, social interactions, and leisure or play activities. The disorder makes it hard for them to communicate with others and relate to the outside world. They may exhibit repeated body movements (hand flapping, rocking), unusual responses to people or attachments to objects and they may resist changes in routines.

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AUTISMO / AUTISMOver one half million people in the U.S. today have some form of autism. Its prevalence rate now places it as the third most common developmental disability more common than Down syndrome. Yet most of the public, including many professionals in the medical, educational, and vocational fields, are still unaware of how autism affects people and how to effectively work with individuals with autism. American Society for Autism.

This definition is clear that autism is caused by a neurological disorder and equally clear in rejecting a history that once considered parenting and environmental circumstances as a likely cause of autism. Difficulties with social interaction and communication are the major features and a wide variety of behavior problems are manifested because of these problems. The definition concludes with the strong statement that not enough is known about autism even though it is a very common disability.

Definition of Autism neurological disorder no parenting or environmental correlates impaired social interaction communication difficulties repetitive or stereotyped behavior

The Diagnostic and Statistical Manual IV (DSM-IV, American Psychiatric Association, 1994) states that the essential features of Autistic Disorder are the presence of markedly abnormal or impaired development in social interaction and communication and a markedly restricted repertoire of activity and interests.

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STANLEY L. SWARTZ

The DSM-IV established the following diagnostic criteria:A. A total of six (or more) items from (1), (2), and (3), with at least two from (1), and one each from (2) and (3). 1. Qualitative impairment in social interaction, as manifested by at least two of th e following: a. Marked impairment in the use of multiple nonverbal behaviors such as eye -to-eye gaze, facial expression, body postures, and gestures, to regulate social interaction. b. Failure to develop peer relationships appropriate to developmental level. c. A lack of spontaneous seeking to share enjoyment, interests or achievements with other people, e.g., by a lack of showing, bringing or pointing out objects of interest. d. Lack of social or emotional reciprocity. 2. Qualitative impairments in communication as mani fested by at least one of the following: a. Delay in, or total lack of, the development of spoken language not accompanied by an attempt to compensate through alternative modes of communication such as gestures or mime. b. In individuals with adequate speech, ma rked impairment in the ability to initiate or sustain a conversation with others. c. Lack of varied, spontaneous, make -believe play or social imitative play appropriate to developmental level. 3. Restricted, repetitive and stereotyped patterns of behavior, interests and activities, as manifested by at least one of the following: a. Encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus. b. Apparently inflexible adherence to specific nonf unctional routines or rituals. c. Stereotyped and repetitive motor mannerisms, e.g., hand or finger flapping or twisting, or complex whole -body movements. d. Persistent preoccupation with parts of objects. B. Delays or abnormal functioning in at least one of the fo llowing areas, with onset prior to age 3 years: 1. Social interaction. 2. Language as used in social communication. 3. Symbolic or imaginative play.

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The World Health Organization uses a similar but somewhat different criteria (ICD -10 Classification of Mental and Behavioural Disorders, 1992):At least 8 of the 16 specified items must be fulfilled. A. Qualitative impairments in reciprocal social interaction, as manifested by at least three of the following five: 1. Failure adequately to use eye -to-eye gaze, facial expre ssion, body posture and gesture to regulate social interaction. 2. Failure to develop peer relationships 3. Rarely seeking and using other people for comfort and affection at times of stress or distress and/or offering comfort and affection to others when they a re showing distress or unhappiness. 4. Lack of shared enjoyment in terms of vicarious pleasure in other peoples happiness and/or spontaneous seeking to share their own enjoyment through joint involvement with others. 5. Lack of socio -emotional reciprocity. B. Qualitative impairments in communication as manifested by at least one of the following: 1. Lack of social usage of whatever language skills are present. 2. Impairment in make -believe and social imitative play. 3. Poor synchrony and lack of reciprocity in conversation al interchange. 4. Poor flexibility in language expression and a relative lack of creativity and fantasy in though processes. 5. Lack of emotional response to other peoples verbal and non verbal overtures. 6. Impaired use of variations in cadence or emphasis to re flect communicative modulation. 7. Lack of accompanying gesture to provide emphasis or aid meaning in spoken communication. C. Restricted, repetitive and stereotyped patterns of behaviour, interests and activities, as manifested by at least two of the following six: 1. Encompassing preoccupation with stereotyped and restricted patterns of interest. 2. Specific attachments to unusual objects. 3. Apparently compulsive adherence to specific, non -functional routines or rituals. 4. Stereotyped and repetitive motor mannerisms. 5. Preoccupations with part -objects or non -functional elements of play materials. 6. Distress over changes in small, non -functional details of the environment. D. Developmental abnormalities must have been present in the first three years for the diagnosis to be made.

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STANLEY L. SWARTZ There is a translation to Spanish of the Childhood Autism Rating Scale (Lpez & Vzquez) developed by colleagues at the Universidad Autnoma de Baja California that can be recommended as a method to collect information from parents and service providers. Core Features Both the DSM-IV and ICD-10 diagnostic criteria and an important research review (Matson, 1994) emphasize the areas of abnormal behavior that are considered common to all cases of autism and those that are associated with the disorder by the frequency of their occurrence. Core features are present in most cases most of the time. Social skills deficits. Research findings in this area have included lack of normal attachments to parents, social intent not signaled by smiles or gestures, poor and avoidant eye contact, poor imitation skills, no peer friendships, no cooperative peer play, and infrequent displays of affection or empathy. Language deficits. Studies in language include poor communication in most all cases with some never acquiring any speech. Also found are less frequent speech, use of speech for social purposes limited, unusual voice quality, and impaired use of nonverbal communication. Insistence on sameness. Autistic children are reported to have problems with changes in the environment or routines and show ritualistic behavior patterns. Stereotypic behaviors such as body rocking and hand flapping are also common. Responses to sensory stimuli. Frequent hypersensitivity and occasional hyposensitivity to visual, auditory, and tactile stimuli have been reported in autistics. Associated Features Associated features on the other hand are those that occur in some cases some of the time. In fact, the coexistence of these features complicates the diagnostic process. Intelligence. Scores range from superior to profoundly retarded. Eighty per cent are concurrently diagnosed as retarded, with 60% having IQs of less than 50.

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AUTISMO / AUTISM Stimulus overselectivity. Several studies have found a pattern of selective processing of sensory information which might contribute to insistence on sameness and generalization difficulties. Self-injurious behavior. As many as 40% have been reported to exhibit behaviors like biting, head banging, hair pulling, and scratching. Fears. An unusual variety and intensity of social and sensory-related fears. Organic disorders. There are a number of organic disorders that occur in individuals with autism at a higher rate than the normal population, including fragile-X syndrome, tuberous sclerosis, and neurofibromatosis. It has also been reported that as many as one-third develop seizures by early adulthood. Autism is a spectrum disorder which means that the characteristics of autism and the severity of its symptoms occur in a wide variety of combinations from mild to severe. Two individuals with the same diagnosis of Autistic Disorder might show very different behaviors and have very different skills.

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Characteristics of Autism Core Features o social skill deficits o language deficits o insistence on sameness o responses to sensory stimuli Associated Features o intelligence o stimulus overselectivity o self-injurious behavior o fears o organic disorders Spectrum Disorder

Differential Diagnosis In addition to the Autistic Disorder, there are four other disorders in the Pervasive Developmental Disorders category and require differential diagnosis. Aspergers Disorder- characterized by impairments in social interactions and the presence of restricted interests and activities, with no clinically significant general delay in language, and testing in the range of average to above average intelligence. Pervasive Developmental Disorder- Not Otherwise Specified (commonly referred to as atypical autism) a diagnosis of PDD-NOS may be when a child does not meet the criteria for a specific diagnosis, but there is a severe and pervasive impairment in specified behaviors. Retts Disorder- a progressive disorder which, to date, has occurred only in girls. Period of normal development and then loss of previously acquired 30

AUTISMO / AUTISM skills, loss of purposeful use of the hands replaced with repetitive hand movements beginning at the age of 1-4 years. Childhood Disintegrative Disorder- characterized by normal development for at least the first 2 years, significant loss of previously acquired skills.

Pervasive Developmental Disorders Autistic Disorder Aspergers Disorder Pervasive Developmental Disorder o Not Otherwise Specified Retts Disorder Childhood Disintegrative Disorder

Theory of Mind One other line of inquiry that is interesting and has treatment implications is the theory of mind (Baron-Cohen, 1997; Happe, 1995). This work has developed a psychological theory that individuals with autism have a kind of mind blindness. This metarepresentational deficit results in an inability to infer the content of others mental states. Autistics then appear to operate in a literal way and unable to put events into context. The problem seems to be understanding that people have mental states different from their own and different from their perception of the real world. In other words, if I know it, you know it, or if I believe it, you must believe it. This simple experiment makes the concept clear. Where Will Sally Look? Regular children consider what Sally knows, autistic children consider what they know.

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STANLEY L. SWARTZ Where Will Sally Look? To test childrens awareness of others perspectives, researchers present a scenario in which Sally places a marble in a container, a second child moves it, and Sally later returns to look for it.

Most children easily surmise that she'll expect to find it in the container where she left it.

Autistic children assume that since they know the marble's in the box, that's where Sally will look.

Causes of AutismIt is now commonly accepted that autism is a biological or neurological difference in the brain. What causes these differences is not known. Also, what causes the various forms of autism is unclear and might suggest that there is more than one cause. Because a familial pattern has been found for autism, a genetic basis is suspected. There are also continued investigations of some environmental causes such as mercury contained in vaccinations or exposure to other toxic elements whether prenatal or during infancy. 32

AUTISMO / AUTISM Autism in not a mental illness or a severe emotional disability and theories about bad parenting or psychological growth and development problems have been rejected. The lack of evidence about the cause of autism has had a resultant impact on the treatment of autism. Various theories abound and some acrimony exists among their adherents.

TreatmentBecause we dont know the cause of autism, we can expect a wide range of proposed treatments. Some of the approaches are based in scientific fact and others seem to be based on wishful thinking. There is considerable evidence that early intervention is important for maximum growth. The treatments that are in general use include applied behavior analysis, auditory integration training, dietary interventions, discrete trial teaching, medications, music therapy, occupational therapy, alternative communication systems, sensory integration training, speech/language therapy, and vision therapy. Not all of these approaches enjoy the full confidence of the profession and some have been accused of exaggerating their success. Regardless of which method or combination of methods is used, individuals with autism need highly structured and individualized programs. They frequently need individual attention and programming that exceeds the traditional school day. Parent support and training are also considered critical elements in a successful program. One of the major obstacles to the inclusion of children with disabilities in both school and the community, is behavior that is inappropriate and disruptive. For children with severe disabilities, behaviors such as tantrums, aggression, or self-injury are challenging beyond what regular education settings are prepared to handle. Families of children with severe disabilities are also looking for assistance beyond the traditional manipulation of consequences offered by most behavior management programs. If we are to accomplish inclusion, it will be necessary not only to identify treatment methods that work, but ones that will be acceptable in the context of inclusive environments. The three concepts of social validity identified by Wolf (1978) are important considerations in reaching this goal. These are feasibility are we able to use the strategy; desirability, are we willing to use the strategy; and effectiveness, does the strategy make a difference for the individual in increasing inclusion opportunities? In other words, we need treatment 33

STANLEY L. SWARTZ strategies that both parents and teachers are able and willing to use and that make a real difference for the individual and their opportunities to participate in school and in the community.

Social Validity Feasibility o Would you be able to use? Desirability o Would you be willing to use? Effectiveness o Reduce problem behavior to an acceptable level. o Make a difference in lifestyle?

Research on the efficacy of special education is such that the urgency of placement in regular education is a very real issue for many children with disabilities. Justification for placement in special education seems unwarranted without some compelling case for its value not only for academic purposes, but as a larger issue of acceptance and even lifestyle (Swartz, 1998). The case can be made that the only obstacle to the inclusion of most children with disabilities is our preparedness to accommodate their needs, or worse, our willingness.

Promising PracticesPositive Behavior Support An increasing body of research in the use of positive behavior support (PBS) has demonstrated that these strategies are highly effective for use with the behaviors presented by children with severe disabilities (Carr, Horned & Turnbull, 1999). In addition, PBS meets the various social validity criteria in 34

AUTISMO / AUTISM most cases and facilitates inclusion of children with disabilities. Unlike traditional behavior management, which views the individual as the sole problem and seeks to fix him or her by quickly eliminating the challenging behavior, PBS views such things as settings and lack of skill as parts of the problem and works to change those. As such, PBS is characterized as a long-term approach to reducing the inappropriate behavior by teaching a more appropriate behavior, and providing the contextual supports necessary for successful outcomes (ERIC, 1999). Effective behavior change must not only reduce inappropriate behaviors it must also teach suitable alternatives. These changes should not only help the child in the immediate environment, or the short term, they must also be important for their life after school, or the long term. The key concept of PBS was then determined to be to change a problem behavior, it is first necessary to remediate deficient contexts. Deficient contexts were found to come in two varieties, those related to behavior repertoires and those related to environmental conditions. Behavior repertoires mean that the individual does not have the necessary behaviors to be successive. Communication skills, social skills, selfmanagement are all found to be inadequate for the demands of their day-to-day existence, whether in school, home, or community. Environmental conditions means that the stimuli in any particular environment are not conducive to appropriate behavior for this individual and contributes to the emergence of problem behaviors. In applying PBS, the research review completed by Carr and his colleagues found two categories of intervention: stimulus-based and reinforcement-based (Carr, et al., 1999). When environments are deficient it is when there are too few stimuli to support positive behavior and that changes in this environment are necessary as part of the effort to help children with disabilities exhibit more appropriate behavior. On the other hand, from a reinforcement perspective, the existence of positive behaviors competes with or makes negative behaviors unnecessary because the positive behaviors provide an alternative for accessing the available reinforcement. In sum, PBS tries to change the environment so that the conditions for appropriate behavior and its reinforcement are available and to teach appropriate behaviors as a substitute for accessing reinforcement in the environment. Positive behavior support appears to be best suited for long-term change and is proactive to the extent that it attempts to teach behaviors and impact the environment that surrounds these behaviors. This is contrasted to aversive or punitive approaches that seem best suited to a crisis management mode. From the perspective of the family, and in keeping with the principles of social validity, PBS would seem to be the appropriate choice because of its good fit with 35

STANLEY L. SWARTZ a family environment. Parents are able to work with their children using techniques that are effective and at the same time part of a normal pattern of interaction. From the perspective of the school, PBS is a good match because of its suitability for use in inclusive settings and because it is primarily a teaching method. Positive behavior support is a procedure more likely to encourage the inclusion of children with disabilities in regular classrooms.

Redirective Therapy Redirective Therapy was developed as part of a training program in a university clinic for parents and families of children with pervasive developmental disabilities (Swartz, 1994). Parents had reported that though some techniques currently available appeared to be effective, they were too harsh and too unusual as a pattern of parent-child interaction. They felt that the treatment became an aversive to both parent and child because of its intensity and that its suitability for the community or an inclusive school setting was an issue. The criteria used in the development of Redirective Therapy (RT) was that it must allow for a positive interaction between parents and their children and that it must be suitable for use in all settings. Using research in nonpunitive techniques (Donnellan, et al., 1998) the strategy focused on a simple pattern of redirection with teaching an appropriate behavior as the end goal. Similar in this regard to the strategy 36

AUTISMO / AUTISM identified as differential reinforcement of alternative behavior (DRA), Redirective Therapy diverged by electing to use only social rewards. It was felt that since one of the primary goals for most children in the program was increased socialization, the use of social rewards would be the first important step in teaching social skills. Therapists using RT were taught to interrupt the undesired behavior and redirect the child to an appropriate behavior. They were instructed to do this interruption in the least intrusive way possible (for example, a word or a gesture would be a preferable interruption to a physical cue). Social reinforcement (praise or touch, or both) would immediate follow the interruption and redirection. In this way, the concern about limited availability of reinforcement in the use of differential reinforcement of other behaviors (DRO) could be resolved. This pattern was repeated until the child stayed on the new task and exhibited an appropriate behavior. Parents reported that their good feeling about this strategy was that they could use it at home and on any trips into the community. In another words, it met both the social validity criteria of feasible (I can use it) and desirable (I will use it).

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Early Literacy Learning Another promising practice is an intense literacy learning project developed in the United States and Mexico for all children including those having difficulties and children with disabilities (Swartz, Shook, & Klein, 2001). This work teaches children to read and write using research based teaching methods. The model also focuses on professional development and a particular organization of service provision. The amount of time focused on literacy is increased to a full school day and content areas are taught using literacy strategies. In addition, teachers, both regular and special, align their strategies. This means that the teachers use the same teaching methods, the same classroom routines, and similar materials. This alignment has the benefit of reducing confusion and allowing children to build on their own knowledge from year to year. Children with special needs benefit 38

AUTISMO / AUTISM from this alignment because they receive individualized and specialized instruction but using the same methods and procedures as those in the regular classroom. This supports their learning and makes for a smoother transition from special to regular education settings. It also supports inclusion. Special education does not necessarily mean different teaching methods, it should mean teaching that is more strategic because of the opportunity to individualize made possible by one-to-one or small group instruction. Teachers are trained to use a gradual decline of teacher support and a gradual increase in student independence based on demonstrated student capability. This reduction of teacher support is based on observations of individual child growth in understanding the process of literacy. The childs use of a variety of problem-solving strategies is supported through good teacher decision-making about ways to assist each child toward the goal of independence. The elements of the instructional framework are designed to help each child and the whole class move together toward that goal. The framework is designed to structure classrooms that use literacy activities throughout the day of every school day. Other curricular areas are delivered using literacy activities as the method of instruction.

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Early Literacy Learning Framework of Instruction Phonological Skills Builds a foundation of phonemic awareness for explicit skills learning Teaches systematic phonics with writing, spelling and reading Supports development of accurate spelling Oral Language Development Assists students in language acquisition Develops and increases vocabulary Promotes the use of accurate language structure Provides a basis for reading comprehension Reading Aloud Introduces good childrens literature in a variety of genre Increases repertoire of language and its use Shared Reading Promotes the development of early reading strategies Encourages cooperative learning and child-to-child support Stresses phonemic awareness and phonological skills Guided Reading Allows observation of strategic reading in selected novel texts Provides direct instruction of problem-solving strategies Allows for classroom intervention of reading difficulties Independent Reading Allows children to practice strategies being learned Develops fluency using familiar texts Encourages successful problem solving Interactive Writing Provides an opportunity to jointly plan and construct text Develops letter-sound correspondence and spelling Teaches phonics and the writing process Independent Writing Encourages writing for different purposes and different audiences Fosters creativity and an ability to compose Allows opportunity to practice or attempt new learning

The Redlands School, An American Mexican Project, has been developed as a demonstration of this literacy learning model and uses a dual immersion, English and Spanish instructional design. Children with disabilities are integrated with their normal peers throughout the day.

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Major Components of Early Literacy Learning Increase emphasis on reading and writing in the curriculum Focus on the profe ssional development of teachers Support school reform and school restructuring Use a balanced reading and writing program supported by scientific research Align teaching methods within and across the grade levels Support English language learners Facilitate inclusion of special needs students Use a capacity-building model Measure success by student achievement gains

InclusionThere wouldnt need to be a discussion about inclusion if there hadnt been exclusion. Individuals with disabilities have been treated differently and excluded from our society and our communities in many ways. What is the case for many disabilities is even more so for autism because of their social and communication deficits.

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Why Inclusion? evaluation category growth exclusion outcomes

In the United States we have a long history of excluding groups, sometimes we think for their good, and other times clearly for our own good. In the early history of the U.S. you could only vote if you were a land owner and if you were a male. Mostly boys went to school, our doctors and lawyers were all male, blacks had their own places to live and went to separate schools, and children who didnt speak English often had no school at all to attend. If you had a disability or special needs there were no public services and certainly no public school. Most of this has changed. We now have mostly an integrated society, except for children with disabilities. This group continues to be segregated and isolated. We continue to exclude them from the mainstream of our society. They are special and so we provide them with a special school or a special classroom. What was learned from past exclusion will also be learned from the exclusion of those with disabilities. It serves no useful purpose and it is wrong. There are numerous problems with how we provide services to children with disabilities that question our use of separate programs. Issues to consider include: 1. The evaluation systems used for children with disabilities produce results hardly better than the flip of a coin. We continue to identify children as handicapped using tests and procedures in which professional examiners have no confidence and these various tests are unable to predict educational need, the only legitimate purpose that this kind of testing could have. 2. Growth in certain categories of handicapping condition has clearly become more a function of political pressure and professional fad than the characteristics and needs of students. Some disability categories, like learning disability, have grown almost 100% per decade. And the growth in autism 42

AUTISMO / AUTISM has been attributed by some to the result of service availability for this category as compared to other disabilities. 3. Inclusion affects only about 5% of the mild to moderate category and even fewer children in the severe category. This might be acceptable if there were good student outcomes for special programs provided in exclusionary settings. Unfortunately, this is not the case. 4. There is very little evidence that the services provided to children with disabilities is very effective. Few graduate from school, few have jobs, few live independently, and few have social lives outside of their immediate families. It appears that, in some cases, it would have been better to do nothing. In most cases, the outcomes of special education are not even measured. The premise of special education is that there are two kinds of learners, normal and abnormal, and that they need two separate systems of education, needs to be challenged and changed. This dichotomy is false. Learners are found on a continuum and can be served in integrated settings. There are no services provided in special education that cannot be provided in a regular school. What is needed is a single, unitary, integrated system of education for all children. There should be no tracks, no special classes, or segregated schools. When children participate in their learning together, when no one is excluded, everyone will the better for it. The stigma of separation, the emotional impact of being considered so different as to be excluded or set aside, is sufficiently harmful, sufficiently devastating to the self esteem and feelings of self-worth of a child as to negate whatever benefits might be expected to accrue from the services provided.

Family InvolvementThere are a number of issues that are key to ensuring successful family involvement in the education of children with disabilities. It might be said that there are three levels of parental involvement. The first is presence. It means they attend meetings but have no real involvement in the program of their child. The next level is participation. Parents do what they are asked and support and participate in the program. The highest level, and the one that is needed for truly effective program, is parent partnership. Not just in name, but partners in reality. This recognition by professionals that effective programs are dependent on informed and involved parents is critical. Parents need to realize that their involvement is vital and not just a gesture or show of support. 43

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Levels of Parental Involvement presence participation partnership

A survey was completed to determine what parents of autistic children considered their greatest needs. The survey covered three major areas of need. When asked what service needs they had for their children they listed seven major areas in the following rank order: respite, speech therapy, recreation/social, dental, psychological, medical, and legal. For the development of a program for their child they listed needs such as assistance with the development of a program plan, procedures to evaluate the program their child was receiving, the support of an advocate, independent evaluation, and support to challenge the actions of their service provider. They were also asked what behavior problems they were having in the home. These were rank ordered: communication, socialization, compliance, tantrums, eating, routine refusal, and sleeping. And their personal needs were reported as participation in a support group, parenting training, individual counseling, and marital counseling. This survey was interesting because the results were not a match to the expectations of the professional staff. Most programs were developed without asking about parent need. To have parents as partners, their needs will be an important consideration.

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Parent Survey Service needs o respite o speech therapy o recreation/social o dental o psychological o medical o legal Personal needs o support group o training o individual counseling o marital counseling

ConclusionFrom these various issues what can be considered the primary challenges to those committed to the education and treatment of children with disabilities? 1. Definition and diagnosis need to be improved. Effective service relies on understanding the disability, its characteristics, and the education and treatment needs. 2. Research into prevention and cure should be established as a high priority. 3. Effective treatments are needed but they need to be respectful of the rights of the individual. Only services that meet the social validity criteria should be considered. 4. Children with disabilities should be included in our schools and in our communities. There is no justification for current exclusionary practices. Inclusion is the right thing to do. 5. Parents as partners are the key to effective parental involvement. Program success is directly related the level of parental involvement. 45

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ReferencesAmerican Society for Autism. What is Autism? 2000. Baron-Cohen, S. (1997). Mindblindness: An essay on autism and theory of mind. Cumberland, RI: Bradford Books. Carr, E.G., Horner, R.H., & Turnbull, A.P. (1999). Positive behavior support for people with developmental disabilities. Washington, DC: American Association on Mental Retardation. Donnellan, A., LaVigna, G., Negri-Shoultz, N., & Fassbender, L. (1988). Progress without punishment. New York: Teachers College Press. ERIC Research connections in special education (Winter, 1999). Positive behavior support. ERIC Clearinghouse on Disabilities and Gifted Education. Happe, F. (1995). Autism: An introduction to psychological theory. Cambridge, MA: Harvard University Press. Los Angeles Times. April 16, 1999. Development Disorders Increase. Matson, J. (1994). Autism. Pacific Grove, CA: Brooks/Cole. Swartz, S.L. (1994). Redirective therapy: Guidelines for use in school and home. San Bernardino, CA: California State University. Swartz, S.L. (1998). Inclusion of children with disabilities in regular school programs. In Z. Jacobo & M. Villa, Sujeto, educacin especial e integracin, Mxico: Universidad Nacional Autnoma de Mxico. Swartz, S., Shook, R., Klein, A., & Hagg, C. (2001). Ensenanza inicial de la lectura y la escritura. Mexico City: Editorial Trillas. Swartz, S., Shook, A., & Shook, R. (2001). Foundation for California Early Literacy Learning, Technical Report. Redlands, CA. Swartz, S., Klein, A., & Shook, R. (2001) Interactive writing and interactive editing. Carlsbad: CA: Dominie Press. Wolf, M.M. (1978). Social validity: The case for subjective measurement, or how applied behavior analysis is finding its heart. Journal of Applied Behavior Analysis, 11, 203-214.

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Autismo y Su TratamientoQuiz el autismo sea uno de los trastornos del desarrollo ms misteriosos. No estamos seguros de lo que lo causa ni tampoco estamos seguros de qu hacer con l. Sigue siendo lo que podramos llamar una discapacidad hurfana. Nadie se responsabiliza por ella y los recursos para su investigacin y tratamiento son inadecuados. Tambin estamos acosados por personas que juegan con las preocupaciones y ansiedades de los padres y les prometen falsas curas milagrosas. El reto para el siglo 21 ser cambiar estas circunstancias y atender esta intrincada y devastadora incapacidad como se merece. An si el autismo no se puede curar, de cualquier manera hay mucho ms que puede hacerse para entenderlo y proveer tratamientos apropiados. La estadstica dice que la incidencia de autismo ha virtualmente incrementado. Estos datos extrados de California muestran que a diferencia de otras discapacidades, tales como la parlisis cerebral y el retraso mental que han tenido incrementos modestos en una poblacin con crecimiento consistente, el autismo ha incrementado en ms del 633.51% en la dcada entre 1987 y 2002. A qu se puede atribuir este crecimiento y cules son los retos en nuestra profesin para tratar este desorden? Incremento porcentual en la poblacin diagnosticada desde 1987 al 2002 y desde 1998 al 2002El nmero de nios adolescentes autistas inscritos en programas del Departamento de Servicios del Desarrollo del estado de California ha crecido marcadamente en la dcada pasada, mientras que el nmero de otros desrdenes del desarrollo se ha incrementado de manera proporcional en la poblacin, de acuerdo al nuevo reporte del estado. Autismo y su tratamiento Desorden Autismo Parlisis Cerebral Epilepsia Retraso Mental Total 1987 3,864 19,972 22,683 72,987 80,483 1998 11,995 28,529 28,529 108,563 136,383 % de cambio 210% 43% 43% 49% 69%

Fuente: Departamento de Servicios del Desarrollo de California

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STANLEY L. SWARTZ Aspectos importantes incluyen la definicin, el diagnstico, el tratamiento, la inclusin y la participacin de los padres. La definicin y el diagnstico porque todava no existe un acuerdo universal entre los profesionales. Es el autismo un sndrome nico o existen diversas condiciones que se conceptualizaran mejor por sus similitudes en los problemas que se presentan y las necesidades de tratamiento? Tambin, el tratamiento de los nios con autismo es controvertido y contencioso. Estn aquellos que prometen una cura para el autismo y otros que dicen que la cura no es posible. Cmo podemos determinar lo que es posible y lo que no? Debido a que el autismo es primeramente una discapacidad social y de comunicacin, necesitamos considerar cmo es tratado y dnde ha sido tratado. Deberan los nios con autismo ser incluidos en los servicios educativos regulares o se les debera dar un servicio especial en instalaciones separadas? Es esto importante? Y por ltimo, cmo pueden participar las familias en el tratamiento de nios con discapacidades en general y nios con autismo especficamente? A menudo estas decisiones se toman y se disean programas sin las consideraciones suficientes hacia los aspectos como la validacin social para la familia.

Definicin y diagnsticoEl primer aspecto a considerar es el de la definicin. Se debe el incremento del autismo a una definicin que es poco clara, demasiado amplia, existe un factor causal que ha producido este incremento? No tenemos un acuerdo general sobre la definicin porque algunos estn a favor de los intentos por una definicin especfica para el autismo como un sndrome nico e identificable y otros prefieren una categora general de desrdenes generalizados del desarrollo donde varios diagnsticos con caractersticas similares se definen bajo el mismo trmino. En los Estados Unidos, la Sociedad Americana de Autismo, ha desarrollado una definicin que se utiliza frecuentemente. Sin embargo, debera entenderse que este grupo est compuesto por profesionales y padres, y que la definicin que ellos han desarrollado es cientfica y poltica. El autismo es una discapacidad del desarrollo compleja que aparece de forma tpica durante los primeros tres aos de vida. Siendo el resultado de un desorden neurolgico que afecta el funcionamiento del cerebro, el autismo y las conductas asociadas suelen aparecer en uno de cada 500 individuos. El autismo es cuatro veces ms frecuente en los nios que en las nias y no se conocen diferencias raciales, tnicas o sociales. Los ingresos familiares, el estilo de vida y los niveles educativos no afectan la probabilidad de ocurrencia del autismo. 48

AUTISMO / AUTISM El autismo interfiere con el desarrollo normal del cerebro en las reas de interaccin social y de habilidades de comunicacin. Tpicamente, los nios y adultos con autismo tienen dificultades en la comunicacin verbal y no-verbal, interacciones sociales y actividades recreativas o de juego. El desorden hace que comunicarse con los dems y relacionarse con el mundo exterior sea difcil. Pueden mostrar movimientos corporales repetitivos (golpear con las manos, mecerse), respuestas inusuales hacia la gente o apego a los objetos y pueden resistirse a los cambios en las rutinas. Ms de medio milln de personas en los Estados Unidos tienen alguna forma de autismo. Su tasa de incidencia actual lo coloca como la tercera discapacidad ms frecuente del desarrollo an ms comn que el sndrome de Down. En la mayora del pblico, incluyendo profesionales del rea mdica y vocacional, existe an poca informacin acerca de cmo el autismo afecta a la gente y cmo se puede trabajar efectivamente con un individuo con autismo. Sociedad Americana de Autismo En esta definicin est claro que el autismo es causado por un desorden neurolgico y es igualmente claro rechazar una historia en la que alguna vez consider las circunstancias parentales y ambientales como una probable causa de autismo. Las dificultades con la interaccin y comunicacin social son las principales caractersticas y una gran variedad de problemas conductuales que se manifiestan por estos problemas. La definicin concluye con una fuerte afirmacin de que no se sabe lo suficiente acerca del autismo an a pesar de que es una discapacidad muy comn.

Definicin de AutismoDesorden neurolgico Ninguna correlacin con la herencia o el ambiente Interaccin social alterada Dificultades de comunicacin Conductas repetitivas y estereotipadasEl Manual Diagnstico Estadstico IV (DSM-IV, Asociacin Psiquitrica Americana, 1994) afirma que las caractersticas esenciales del Desorden Autista son la presencia de un desarrollo marcadamente anormal y disparejo 49

STANLEY L. SWARTZ en la interaccin social y la comunicacin, y un repertorio muy restringido de actividades e intereses. El DSM-IV estableci los siguientes criterios de diagnstico: A. Un total de seis (o ms) elementos del (1), (2) y (3) con al menos dos formas de (1), y uno de (2) y (3). 1. Alteracin cualitativa de la interaccin social, manifestada como al menos dos de las siguientes: a. Alteracin importante al utilizar mltiples conductas no-verbales tales como contacto visual, expresin facial, postura corporal, gestos y dificultad para regular la interaccin social. b. Falla en el desarrollo de las relaciones con otros que son apropiadas al nivel del desarrollo. c. Deficiencia al buscar y compartir el gozo, intereses o logros con otras personas. Por ejemplo, no muestra, trae o seala objetos de inters. d. Falta de reciprocidad social o emocional. 2. Dificultades cualitativas en la comunicacin manifestada al menos por alguno de los siguientes: a. Retraso o carencia total del desarrollo del lenguaje sin un intento de compensar con formas alternativas de comunicacin como gestos o mmica. b. En individuos con lenguaje adecuado existe una dificultad importante en la habilidad de iniciar o sostener una conversacin con otros. c. Carencia de juego variado, espontneo, de representacin o de juego de imitacin social apropiado al nivel de desarrollo. 3. Patrones de conducta restringidos, repetitivos y estereotipados y actividades manifestadas en al menos uno de los siguientes: a. Preocupacin alrededor de uno o ms patrones de inters estereotipados y restringidos que no es normal en la intensidad o en foco. b. Adherencia inflexible a rutinas o rituales no funcionales. c. Manerismos motores estereotipados y repetitivos. Por ejemplo, golpear los dedos o la mano o girar, o movimientos complejos de todo el cuerpo. d. Preocupacin persistente en las partes de los objetos. B. Retraso o funcionamiento anormal de al menos una de las siguientes reas con una aparicin previa a los 3 aos de edad: 1. Interaccin social 50

AUTISMO / AUTISM 2. Lenguaje utilizado para la comunicacin 3. Juego simblico e imaginativo La Organizacin Mundial de la Salud utiliza un criterio similar pero distinto (ICD-10 Clasificacin de los Desrdenes Mentales y Conductuales, 1992): Al menos 8 de los 16 elementos que se especifican, deben de presentarse. a. Dificultades cualitativas en la interaccin social recproca, segn se manifiesta en al menos 3 de los siguientes cinco: 1. Falla en la utilizacin del contacto visual, expresin facial, postura corporal y gestos para regular la interaccin social. 2. Falla en el desarrollo de la relaciones con los otros. 3. Difcilmente buscan y utilizan otras personas para consuelo y afecto cuando hay situaciones de dificultad y/o ofrecen apoyo y afecto a otros cuando estn en situaciones difciles o tristes. 4. Carencia de gozo en trminos de placer vicario sobre la felicidad de otras personas y/o de buscar compartir su propio gozo espontneamente al involucrarse con otros. 5. Carencia de reciprocidad socio-emocional. b. Dificultades cualitativas en la comunicacin segn se manifiestan en al menos uno de los siguientes. 1. Carencia del uso social de habilidades de lenguaje. 2. Impedimentos en los juegos de roles y de imitacin 3. Pobre sincronicidad y carencia de reciprocidad en los intercambios conversacionales. 4. Flexibilidad pobre del lenguaje y una carencia relativa de creatividad, fantasa y procesamiento del pensamiento. 5. Carencia de respuesta emocional a las aproximaciones verbales y no-verbales de otras personas. 6. Dificultades en el uso de variaciones en la cadencia o nfasis para reflejar modulacin comunicativa. 7. Carencia de gestos que acompaan y que enfatizan o apoyan el significado de la comunicacin oral. c. Patrones de conducta restringidos, repetitivos y estereotipados y actividades que se manifiestan por al menos dos de los siguientes seis: 1. Preocupacin rodeada de patrones de inters estereotipados y restringidos. 51

STANLEY L. SWARTZ 2. Apegos especficos a objetos inusuales. 3. Adherencia aparentemente compulsiva a rutinas o rituales poco funcionales. 4. Manerismos motores estereotipados y repetitivos. 5. Preocupaciones con partes de objetos o elementos no funcionales de materiales de juego. 6. Alteraciones ante los cambios en pequeos detalles no funcionales del medio ambiente. d. Anormalidades del desarrollo que deben estar presentes en los primeros tres aos de edad para que se puedan diagnosticar. Existe una traduccin al espaol de la Escala de Evaluacin del Autismo Infantil (Spanish, Lopez & Vzquez) desarrollada por colegas de la Universidad Autnoma de Baja California que puede recomendarse como un mtodo para recolectar informacin por parte de los padres y quienes atienden a los nios. Caractersticas Principales Los criterios de diagnstico tanto del DSM-IV como del ICD-10 y una revisin importante a la investigacin (Matson 1994) enfatizan las reas de conducta anormal que son consideradas comunes para todos los casos de autismo y las que estn asociadas con el desorden por su frecuencia de ocurrencia. Las caractersticas principales estn presentes en la mayora de los casos la mayor parte del tiempo. Dficits en habilidades sociales. Los hallazgos de investigacin en esta rea han incluido la carencia de apegos normales a los padres, intentos no adecuados de gestos o sonrisas, contacto visual pobre y evasivo, habilidades de imitacin limitadas, no hay amistad con otros, no hay juego cooperativo con otros y muestras poco frecuentes de afecto y empata. Dficits de lenguaje. Los estudios en lenguaje incluyen comunicacin limitada en la mayor parte de los casos, en algunos de ellos no se adquiere el lenguaje. Tambin se ha encontrado que se habla poco, un uso limitado del lenguaje con propsitos sociales, calidad de voz poco usual, y comunicacin no-verbal muy alterada. Insistencia en lo mismo. Los nios autistas tienen problemas con cambios en el ambiente o en las rutinas y muestran patrones de conducta ritualistas. Conductas estereotipadas tales como mecer el cuerpo y golpear las manos son muy comunes. 52

AUTISMO / AUTISM Respuestas a estmulos sensoriales. Hipersensibilidad frecuente e hiposensibilidad ocasional a los estmulos visuales, auditivos y tctiles. Caractersticas Asociadas Las caractersticas asociadas, por otro lado, son las que ocurren en algunos casos algunas veces. De hecho, la coexistencia de estas caractersticas complica el proceso de diagnstico. Inteligencia. Rangos entre superior y hasta retraso profundo. Ochenta por ciento se diagnostican como retrasados, cuando un 60% tienen CIs de menos de 50. Sobreselectividad a los estmulos. Varios estudios han encontrado un patrn de procesos selectivos de la informacin sensorial que podra contribuir a la insistencia en lo mismo y la generalizacin de dificultades. Conducta auto-destructiva. Aproximadamente el 40% muestran conductas tales como morder, golpear la cabeza, jalar el cabello y rasguar. Temores. Una variedad inusual e intensa de miedos sociales y sensoriales. Desrdenes orgnicos. Existe un nmero de desrdenes orgnicos que ocurren en los individuos con autismo en un rango mucho mayor que el de la poblacin normal, incluyendo el sndrome X frgil, esclerosis tuberosa y neurofibromatosis. Tambin se ha reportado que un tercio desarrolla infartos en la juventud. El autismo es un desorden de espectro, lo que quiere decir que las caractersticas del autismo y la severidad de los sntomas ocurren en una gran variedad de combinaciones desde leves hasta severas. Dos individuos con el mismo diagnstico de Desorden Autista pueden mostrar conductas muy distintas y tener habilidades muy diferentes.

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CARACTERSTICAS DEL AUTISMOPrincipales caractersticas:1. Dficits en las habilidades sociales 2. Dficits de lenguaje 3. Insistencia en lo mismo 4. Respuestas a estmulos sensoriales

Caractersticas asociadas:5. 6. 7. 8. 9. Inteligencia Sobreselectividad a los estmulos Conducta auto-destructiva Temores Desrdenes orgnicos

Desrdenes Orgnicos:10. Desorden de Espectro

Diagnstico Diferencial Adems del Desorden Autista, existen otros cuatro desrdenes en la categora de los Desrdenes Generalizados del Desarrollo que requieren de un diagnstico diferencial. Desorden de Asperger. Caracterizado por impedimentos en las interacciones sociales y la presencia de intereses y actividades restringidas, sin un retraso clnicamente significativo del lenguaje, y se ubica en un rango promedio o superior en los promedios de inteligencia. Desorden Generalizado del Desarrollo, no especificado de otra forma (comnmente referido como autismo atpico). Un diagnstico de DGD-NE puede hacerse con un nio que no cumple los criterios para un diagnstico especfico, pero existe un impedimento generalizado y severo en conductas especficas. Desorden de Rett. Es un desorden progresivo que hasta la fecha ha ocurrido solamente en nias. Perodo de desarrollo normal y luego prdida de habilidades previamente adquiridas; prdida del uso propositivo de las manos 54

AUTISMO / AUTISM reemplazado con movimientos repetitivos que comienza entre el 1er. y el 4o. ao de edad. Desorden integrativo de la Infancia. Se caracteriza por un desarrollo normal por los dos primeros aos, y luego una prdida significativa de las habilidades adquiridas previamente.

Desrdenes Generalizados del Desarrollo1. Desorden Autista 2. Desorden de Asperger 3. Desorden Generalizado del Desarrollo (que no se especifica de otra manera) DGD-NE 4. Desorden de Retts 5. Desorden desintegrativo de la infancia

Teora de la Mente Otra lnea de bsqueda que es muy interesante y que tiene implicaciones en el tratamiento es la Teora de la Mente (Baron-Cohen, 1997; Happe, 1995). Este trabajo ha desarrollado una teora psicolgica acerca de que los individuos con autismo tienen una especie de ceguera mental. Este dficit metarepresentacional es la resultante de una incapacidad para inferir el contenido de otros estados mentales. Los autistas aparecen como si operaran de una manera literal y son incapaces de poner los eventos en contexto. El problema, parece ser, radica en comprender que la gente tenga estados mentales diferentes de los propios y diferentes de su percepcin real del mundo. En otras palabras, si yo lo s, t lo sabes, o si creo en eso, t debes tambin creer. Este sencillo experimento aclara el concepto. Hacia dnde mirar Sally? Los nios regulares consideran lo que Sally sabe, pero los nios autistas consideran lo que ellos saben.

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STANLEY L. SWARTZ Dnde buscar Sally? Para probar las respuestas de los nios desde otra perspectiva, los investigadores presentaron un escenario en el cual Sally coloca una canica en un contenedor. Un segundo nio cambia la canica. Ms tarde Sally regresa a buscarla.

La mayora de los nios suponen fcilmente que ella esperar encontrar la canica en el contenedor donde ella la dej. Los nios con autismo asumen que, ya que ellos saben en qu caja est la canica, Sally la buscar ah.

Causas del AutismoActualmente es comnmente aceptado que el autismo es una diferencia biolgica o neurolgica en el cerebro. Aunque no se conoce an qu es lo que causa estas diferencias. Tambin lo que causa las varias formas de autismo es poco claro y puede sugerir que existe ms de una causa. Existe un cierto patrn familiar para el autismo, por lo que se sospecha de cierta base gentica. 56

AUTISMO / AUTISM Existen tambin investigaciones continuas acerca de algunas causas ambientales tales como el mercurio contenido en las vacunas o la exposicin a otros elementos txicos en el perodo prenatal o durante la infancia. El autismo no es una enfermedad mental o una discapacidad emocional severa y las teoras acerca de una mala educacin de los padres o de problemas de desarrollo o crecimiento psicolgico se han rechazado. La falta de evidencia acerca de las causas del autismo han impactado en el tratamiento del autismo. Abundan las teoras y algunas causan asperezas entre sus seguidores.

TratamientoDebido a que no sabemos la causa del autismo, podemos esperar un amplio rango de tratamientos propuestos. Algunas aproximaciones estn basadas en hechos cientficos y otras parecen estar basadas en buenas intenciones. Existe considerable evidencia de que la intervencin temprana es importante para el mximo crecimiento. Los tratamientos que en general se utilizan, son el anlisis aplicado de la conducta, el entrenamiento en integracin auditiva, las intervenciones de alimentacin, la enseanza en ensayos discretos, medicamentos, terapia de msica, terapia ocupacional, sistemas alternativos de comunicacin, el entrenamiento en integracin sensorial, la terapia de lenguaje y la terapia visual. No todas estas aproximaciones gozan de total confianza entre los profesionales y algunas han sido acusadas de exagerar su xito. Independientemente del mtodo o combinacin de mtodos que se utilicen, los individuos con autismo necesitan programas altamente estructurados e individualizados. Frecuentemente requieren atencin individual y programas que van ms all de un da normal de escuela. El apoyo de los padres y su entrenamiento tambin se consideran elementos crticos de un programa exitoso. Uno de los principales obstculos en la inclusin de nios con discapacidades en la escuela y la comunidad, es su conducta que es inapropiada e interrumpe a los dems. Para los nios con discapacidades severas, las conductas tales como los berrinches, las agresiones, las conductas autodestructivas retan mucho a la educacin regular porque los maestros no estn preparados para lidiar con ellas. Las familias de nios con discapacidades severas tambin buscan apoyo ms all de lo que se hace en la escuela tradicional.

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STANLEY L. SWARTZ Si queremos lograr la inclusin, ser necesario no solamente identificar los mtodos de tratamiento que funcionan, sino los que seran aceptables en el contexto de los ambientes de inclusin. Los tres c