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«Dissertation EXAMINING FIVE PROMISING METHODOLOGIES FOR TREATING CHILDREN WITH AUTISM SPECTRUM DISORDERS by STEPHEN MARK SHORE B.A., University of ...»

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BOSTON UNIVERSITY

SCHOOL OF EDUCATION

Dissertation

EXAMINING FIVE PROMISING METHODOLOGIES FOR TREATING

CHILDREN WITH AUTISM SPECTRUM DISORDERS

by

STEPHEN MARK SHORE

B.A., University of Massachusetts, 1986

B.A., University of Massachusetts, 1986

M.A., Boston University, 1992 Submitted in partial fulfillment of the requirements for the degree of Doctor of Education © Copyright by

STEPHEN MARK SHORE

Approved by (to be inserted) To My wife, Yi Liu My parents, Carole and Herbert Shore My colleagues and people on the autism spectrum iv

ACKNOWLEDGEMENTS

The outpouring of support for this study from family members, friends, and colleagues has been a great honor and life experience to whom I shall forever remain indebted to. A special note of gratitude goes to my wife who spent many years as a “dissertation widow” patiently awaiting a seemingly endless period of time for this study to be completed.

I am most grateful to Dr. Gerald S. Fain, my faithful academic and dissertation advisor, friend, for his continued advise and support making the completion of this dissertation possible. Much appreciation goes to the other members of the dissertation committee Dr. Thomas Cottle, Dr. LeRoy Clinton, Dr. Arnold Miller, and John Ratey whose unflinching encouragement, knowledge, advise, and friendships guided me towards completion of this study.

A special note of thanks is in order to Dr. Gary Mesibov, Arnold Miller, Dr. Ann Roberts, Dr. Tristram Smith, and, Dr. Serena Wieder, all who took countless hours from their busy schedules to open their minds and hearts for in providing deeply thought out responses to my questions regarding the approaches they have spent their lives developing.

I am forever grateful to Dr. Arnold Miller who, as friend and mentor, helped initiate and continues to support my development as a scholar, educator, and humanitarian in my mission of helping people on the autism spectrum achieve fulfilling and productive lives to their greatest potential.

v

EXAMINING FIVE PROMISING METHODOLOGIES FOR TREATING

CHILDREN WITH AUTISM SPECTRUM DISORDERS

(Order No. )

STEPHEN MARK SHORE

Boston University, School of Education, 2008 Major Professor: Gerald S. Fain, Professor of Education

ABSTRACT

Through written survey and recorded interviews a snapshot in time was taken on how theorists of five promising approaches – Applied Behavioral Analysis, TEACCH, Daily Life Therapy, Miller Method, and DIR – think about children on the autism spectrum.

Some of the findings include agreement on the need for a better definition of autism, the need for treatment-based research for developing and maintaining best practice, that the diversity of needs of people on the autism spectrum requires a wide range of approaches, and a general sense that people with autism have many valued strengths to contribute to society. Other findings include extensive use of non standardized assessments along with judicious employment of standardized instruments. Finally, all the theorists – some of home have spent more than 4 decades helping children with autism – all feel that the work they have done can be useful to youth with other challenges as well.

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Table One: Autistic Tendencies after Exposure to the Mumps, Measles, Rubella Vaccination 23 Table Two: Contrasting Children with Closed-System and System-Forming Disorders 343

–  –  –

Figure Six: Typical Developmental Growth for Typical and Atypical Children 57 Figure Seven: Comparative Approaches for Working with Children on the Autism Spectrum 67

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Figure Twelve: Questions examining different aspects of a theorist’s experience, opinions, values, feelings, and knowledge from the past to the future 103

–  –  –

The purpose of this study was to lay the groundwork for a comparison of the myriad educationally based interventions for children on the autism spectrum. Effective comparison of methodologies will enable professionals to better match specific methods to a child’s particular needs. The absence of comparative studies in educational interventions studies (Prizant & Rubin, 1999) may be due, in part, to a lack of standardization in measuring the efficacy of methodologies (Prizant & Wetherby, 1998).

The laying of this groundwork involves the development of a matrix that addresses key characteristics across the different methodological approaches, including theoretical base, goals, initial learning environment, and measurable outcomes, based on a thorough review of the literature. The remainder of the information, categorized as advantages, concerns, errors, and future directions for research, will be obtained by querying key figures involved in developing the interventions chosen for study.

Autism Spectrum Disorders Autism is a complex developmental disability, typically occurring within the first three years of life (APA, 2000; ASA, 2004). According to current estimates, autism occurs in as many as 1/166 births (Bertrand et al., 2001) with a prevalence in certain areas of the United States reaching 1% of the total elementary school population (Silbert, 1999). Thus, autism and its related disorders of pervasive developmental delay-nototherwise specified (PDD-NOS) and Asperger Syndrome are some of the most common developmental disabilities (U. S. Department of Education, 2002).





People with autism spectrum disorders often experience severe challenges in verbal and nonverbal communication, social interactions, and leisure or play activities, making it hard to interact with others and to relate to the outside world (APA, 2000). Self-injurious and/or aggressive behavior may be present, along with repeated body movement such as hand flapping or rocking. Unusual responses to people or attachments to objects and resistance to changes in routines are also often present. Further, persons on the autism spectrum usually experience sensory distortions in the five outer senses of sight, hearing, touch, smell, and taste, as well as the inner senses of proprioception and the vestibular (Myles, Cook, Miller, Rinner & Robbins, 2000; Shore, 2003).

Meaning “self” in Greek (Stein & Urdang, 1966), the word autism was first used in 1906 (Bleuler, 1950), but did not come into popular usage until 1943 by Leo Kanner, who coined the term refrigerator mother (1943) to refer to mothers of children with autism, later popularized by Bruno Bettelheim (1967). Thus, during the 1940-1960s autism was considered to be a rare psychological disorder as a result of mother-child pathology (Bender, 1947; Bettelheim, 1967; Mahler, 1952; Rank, 1949) and having an incidence rate as low as 2.33/10,000 (Hoshino, Kumashiro, Yashima, Tachibana, &Watanabe, 1982). Treatment focused on curing autism in a psychodynamic therapeutic milieu.

During the mid 1960s attention to determining the etiology of autism shifted to neurobiological causes (Rimland, 1964) and resulting organic dysfunction (Frith, 1989), stimulating biological research into the cause and cure of autism. In the 1990s, research expanded into obstetric and postnatal, neurological, environmental, immunological factors, as well as vaccinations, allergies to certain foods and gastrointestinal track origins (Kauffman, 1993; Lauritsen et al., 1999; Tsai & Ghaziuddin, 1992). However, to this point, there remains no conclusive evidence as to the etiology or etiologies of autism spectrum disorders (Rapin, 1997).

Although there are no definitive answers to the cause(s) of autism (Rapin, 1997), significant attention has been paid to teaching children with autism spectrum disorders to lead fulfilling and productive lives to the best of their ability.

Intervention/Treatment Numerous methodological interventions and therapies have been developed for working with children on the autism spectrum. Basically, they can be categorized as biomedical, neurosensory, psycho-dynamic, and behavioral/educational. Practitioners of biomedical treatments look at autism as resulting from chemical imbalances in the body.

Some examples of biomedical treatments suggest the need for repair to the immune system wounding exacerbated by vaccinations (Taylor et al., 2002; Wakefield et al., 1998), alleviating allergies to certain substances (Waring, & Klovrza, 2000; Waring & Ngong, 1993), and chelating to rid the body of heavy metal toxicity (Bernard et al., 2001).

Neurosensory treatments include sensory integration (Ayers, 1972, 1979; Bundy, Lane, & Murray, 2002; Dunn, 1997; Huebner, 2001), facilitated communication (Biklen,

1993) and, to some extent, Daily Life Therapy as practiced at the Boston Higashi School for Children with Autism (Kitahara, 1983).

The psycho-dynamic-based interventions include holding therapy and psychotherapy.

Holding therapy (Welch, 1983) is based on the notion of autism being caused by motivational conflict behavior (Tinbergen & Tinbergen, 1983). Treatment involves the parent “enveloping” the child while showering him or her with verbal and other positive affective expression. Practitioners of holding therapy believe that by overcoming the child’s resistance to being held reduces avoidant behaviors and promotes more positive interaction (Richer, 1983; Richer & Nicol, 1971; Zappella et al., 1991).

Beginning shortly after Kanner (1943) wrote his seminal paper describing 11 children with autistic behaviors, practitioners of the psychotherapeutic approach attempted to undo damage caused by child-mother relational pathology (Kanner 1973; Kanner & Eisenberg, 1956). At present, it is widely recognized as best practice for practitioners of the psychoanalytical approach to consider any psychological or psychiatric disorders to be comorbid with or very likely secondary to the etiology of autism spectrum disorders (Dan Rosenn, personal communication, October 18, 2001; Martin Miller, personal communication, March 23, 2003).

Purpose of the Present Study Aside from biomedical interventions, the greatest amount of research has been devoted to the educational/behavioral/developmental approaches. While the importance of research into endocrinology, genetics, biology, neurology, as well as other areas of etiology and intervention cannot be overemphasized, along with the realization that the previously mentioned approaches often play an important and even vital role in helping people with autism, this study will examine five promising programs in the educational/behavioral/developmental domain because of the difference in the way data are collected, assessed, and acted upon as contrasted to the biological and other categories of intervention for example, practitioners of behaviorally oriented intervention often focus on modifying a child’s actions through operant conditioning whereas the developmentally based approaches will work to close gaps in a child’s developmental areas of deficits. It is hoped that this study will prompt similar work with the other intervention categories, with the eventual goal of standardizing first the discussion and assessment of, and, finally, developing a reliable manner of matching intervention(s) to the needs of children on the autism spectrum.

The educational approaches chosen for study include Applied Behavioral Analysis (ABA) (Lovaas, 1987, 2002); Treatment and Education of Autistic and related Communication-handicapped Children (TEACCH) (Mesibov, 1995; Mesibov, Shea, & Schopler, 2004); Daily Life Therapy (DLT) (Kitahara, 1983); the Miller Method (MM) (Miller & Eller-Miller, 1989, 2000); and Developmental Individual-Difference Relationship-Based Model (DIR) (Greenspan & Wieder, 1998). These methodologies range on a scale from being maximally therapist and prescriptive oriented in terms of setting the agenda for a particular session to being child-centered in terms of determining the activities and outcomes of a session.

Key figures in the development and continued research of the educational methodologies will be interviewed to gather information for this study. Specifically, Tristram Smith will be approached for ABA since he studied closely with Ivar Lovaas, who initiated practice and research into this approach. Gary Mesibov co-developed TEACCH and will, therefore, be interviewed related to that approach. Kiyo Kitahara began initial work on developing Daily Life Therapy as practiced at the Boston Higashi School. However, since she passed away in 1984, Ann Roberts, a psychologist of the Boston Higashi School, will be interviewed as the key figure in the continued practice and development of DLT. Finally, Arnold Miller and Serena Wieder will be interviewed for information regarding the MM and DIR, respectively As mentioned, the incidence rate of children diagnosed with autism has risen dramatically from 2.33/10,000 in the 1960s (Hoshino, Kumashiro, Yashima, Tachibana, & Watanabe, 1982) to 60/10,000 in 2002 (Wing & Potter, 2002). The 24th Annual Report to Congress on the Implementation of the Individuals with Disabilities Education Act (2002, p. II-21) indicates children with autism aged 6-21 in the public schools increased from 245 to 78,749, or a percentage change of 1,354% from the 1991-1992 to the 2000academic years. Given the raise in incidence of autism spectrum disorders along with the resulting increase in outlay of resources for education and treatment, it is imperative that in addition to mandating rigorous scientific study and identification of best practices, a procedure be developed to determine which method best suits a particular child. Despite a great deal of research on educational interventions, to date no studies have compared these interventions.



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