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Capute & Accardo's Neurodevelopmental Disabilities in Infancy and Childhood, Third Edition; Volume II: The Spectrum of Neurodevelopmental Disabilities


Capute & Accardo's Neurodevelopmental Disabilities in Infancy and Childhood, Third Edition; Volume II: The Spectrum of Neurodevelopmental Disabilities

The Spectrum of Neurodevelopmental Disabilities
Volume Editor: Pasquale J. Accardo   Invited Contributors: Jennifer A. Accardo, Kruti Acharya M.D., Marilee C. Allen, Kevin M. Antshel Ph.D., Mark S. Atkins Ph.D., Genila M. Bibat, Peter A. Blasco, Thomas A. Blondis, Nathan J. Blum M.D., Joann N. Bodurtha, George T. Capone, Theresa L. Cramer M.S., OTR/L, Diane L. Damiano Ph.D., PT, Joshua B. Ewen, Marjorie A. Fessler, Joanne E. Flanagan M.S., OTR/L, Wanda Fremont, Marianne M. Glanzman M.D., Randi J. Hagerman, Robin L. Hansen, Adam L. Hartman, Alexander H. Hoon Jr., M.D., Susan L. Hyman M.D., Margie L. Jaworski, Michael W. Johnson, Heather Kammann, Wendy R. Kates Ph.D., Walter E. Kaufmann, Stephen Kinsman, Eric H.W. Kossoff, Hillary Kruger, Arabella I. Leet, Susan E. Levy M.D., Ronald L. Lindsay, Paul H. Lipkin, Gregory S. Liptak M.D., M.P.H., Thomas M. Lock, E. Mark Mahone Ph.D., ABPP, Ane M. Marinez-Lora Ph.D., Deepa Menon, Michael E. Msall, Scott M. Myers M.D., SakkuBai Naidu, Stephen T. Nowicki, Rita Panoscha, Jennifer A. Pinto-Martin Ph.D., MPH, Joseph P. Pillion Ph.D., Patricia A. Plourde M.Ed., Isabelle Rapin, Brian T. Rogers, Paul T. Rogers, Nancy J. Roizen M.D., James E. Rubenstein, Linda M. Schuberth, Kevin M. Senn, Bruce K. Shapiro M.D., Dongwon Shin, Robert J. Shprintzen Ph.D., Harvey Singer, Elaine Stashinko Ph.D., Mark A. Stein Ph.D., ABPP, Richard D. Stevenson, Usha T. Sundaram, Janet E. Turner Ph.D., Eileen P.G. Vining

ISBN: 978-1-55766-758-8
Pages: 800
Copyright: 2007
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Expanded with coverage of today's most critical topics and written by more than 90 physician experts, this is the second of two volumes comprising the third edition of the core text for certification in neurodevelopmental disabilities in pediatrics. The most complete textbook available on this subject, this definitive resource prepares future clinicians to skillfully assess and treat a range of neurodevelopmental disabilities in infants and children.

In Volume II, readers will explore more than two dozen specific disorders, their effects from infancy through adolescence, and the latest assessment and intervention strategies for each. Disabilities covered include

  • autism spectrum disorders
  • cerebral palsy
  • Down syndrome
  • spina bifida
  • fragile X and X–linked intellectual disability
  • learning disabilities
  • Prader–Willi syndrome
  • Williams syndrome
  • Smith–Magenis syndrome
  • neuromuscular dysfunction

A necessary textbook for academic pediatrics and a must-have desk reference for every practicing pediatrician, this authoritative resource will help clinicians ensure the best possible care for children with neurodevelopmental disabilities.

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Reviews

Review: ADVANCE for Physical Therapists & PT Assistants
"These texts are a complete resource encompassing pediatric neurodevelopmental disabilities."
Review by: T. Berry Brazelton, Professor of Pediatrics, Emeritus Harvard Medical School, Children's Hospital Boston, Founder, Brazelton Touchpoints Center
"All physicians who work with children should have this as a reference . . . covers our present knowledge of neurodevelopmental disabilities and is a firm base for the rapidly developing field."
Contents, Volume I.
Editorial Board
Contributors, Volume II.
Introduction

  1. A Medical History of Developmental Disabilities
    Pasquale J. Accardo and Jennifer A. Accardo

I. Spectrum of Motor Dysfunction

  1. Epidemiology and Etiological Spectrum of Cerebral Palsy
    Elaine Stashinko and Heather Kammann

  2. Preterm Development
    Marilee C. Allen

  3. Neurophysiological Basis for the Treatment of Movement Disorders
    Thomas M. Lock

  4. Neurobiology, Diagnosis, and Management of Cerebral Palsy
    Michael W. Johnson, Alexander H. Hoon, Jr., and Walter E. Kaufmann

  5. Gross Motor Assessment
    Diane L. Damiano

  6. Occupational Therapy Assessment and Intervention
    Linda M. Schuberth, Joanne E. Flanagan, and Theresa L. Cramer

  7. Orthopedic Intervention in Cerebral Palsy
    Arabella I. Leet and Peter A. Blasco

  8. Nutrition and Growth
    Richard D. Stevenson

  9. Pediatric Dysphagia
    Brian T. Rogers and Kevin M. Senn

  10. Movement and Coordination Delay and Disorder
    Thomas A. Blondis

  11. Spina Bifida
    Gregory S. Liptak

  12. Congenital Hydrocephalus and Other Forms of Childhood Acquired Hydrocephalus
    Stephen Kinsman

  13. Tourette Syndrome and Associated Neurobehavioral Problems
    Adam L. Hartman and Harvey S. Singer

II. Intellectual Impairment
  1. The Spectrum of Cognitive-Adaptive Developmental Disorders in Intellectual Disability
    Kruti Acharya and Michael E. Msall

  2. Psychological Assessment
    E. Mark Mahone

III. Genetic Syndromes Associated with Cognitive Impairment
  1. Down Syndrome
    George T. Capone, Nancy J. Roizen, and Paul T. Rogers

  2. Prader-Willi Syndrome
    Barbara Y. Whitman

  3. X-Linked Intellectual Disabilities
    Stephen T. Nowicki, Robin L. Hansen, and Randi J. Hagerman

  4. Williams Syndrome
    Deepa Menon

  5. Velocardiofacial Syndrome
    Wendy R. Kates, Kevin M. Antshel, Wanda Fremont, Nancy J. Roizen, and Robert J. Shprintzen

  6. Turner Syndrome
    Joann N. Bodurtha, Margie Jaworski, and Usha T. Sundaram

  7. Smith-Magenis Syndrome Scott M. Myers

  8. Epilepsy and Developmental Disabilities
    James E. Rubenstein, Eileen P.G. Vining, and Eric H.W. Kossoff

IV. Communication Disorders
  1. The Child Who Does Not Speak
    Rita Panoscha

  2. Assessment of Speech and Language Disorders in Children
    Janet E. Turner

  3. Hearing Loss
    Nancy J. Roizen

  4. Audiological Assessment of Infants and Children with Neurodevelopmental Disabilities
    Joseph P. Pillion

V. Autism
  1. Autism Spectrum Disorders: Overview and Diagnosis
    Susan E. Levy, Susan L. Hyman, and Jennifer A. Pinto-Martin

  2. Etiologies of the Autism Spectrum Disorders
    Isabelle Rapin

  3. Treatments for Children with Autism Spectrum Disorders
    Susan E. Levy, Hillary Kruger, and Susan L. Hyman

  4. Rett Syndrome
    Genila M. Bibat and SakkuBai Naidu

VI. Disorders of Learning
  1. Specific Learning Disabilities
    Joshua B. Ewen and Bruce K. Shapiro

  2. Dyscalculia
    Ronald L. Lindsay

  3. Psychoeducational Assessment
    Marjorie A. Fessler and Patricia A. Plourde

VII. Disorders of Attention and Hyperactivity
  1. Introduction to Attention-Deficit/Hyperactivity Disorder
    Thomas A. Blondis

  2. Genetics, Imaging, and Neurochemistry in Attention-Deficit/Hyperactivity Disorder
    Marianne Glanzman and Nathan J. Blum

  3. Disorders of Attention: Diagnosis
    Mark A. Stein and Dongwon Shin

  4. Management of Children and Adolescents with Attention-Deficit/Hyperactivity Disorder
    Thomas A. Blondis

  5. Attention-Deficit/Hyperactivity Disorder Mimic Disorders
    Paul H. Lipkin

  6. Attention-Deficit/Hyperactivity Disorder and Psychiatric Comorbidity
    Marc S. Atkins and Ane´ M. Maríñez-Lora

Index

Excerpted from Chapter 16 of Capute & Accardo's Neurodevelopmental Disabilities in Infancy and Childhood, Third Edition: Volume II. The Spectrum of Neurodevelopmental Disabilities, edited by Pasquale J. Accardo, M.D.

Copyright © 2008 by Paul H. Brookes Publishing Co. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.

Neurodevelopmental disabilities are characterized by a spectrum of abilities and deficits, with associated behavioral and cognitive dysfunction ranging from subtle and focal to profound and pervasive. Psychological assessment is often an essential part of the diagnosis and management of children with neurodevelopmental disabilities because it can facilitate a more thorough understanding of the child's functioning, document developmental progress for future follow-up, help to predict future needs, and serve as a guide for intervention. Psychological assessment involves the dynamic integration of information from the child's history, observation in multiple settings, and the use of standardized psychometric tests. Performance on psychometric tests and standardized observations of behavior is compared with available normative data for age and gender. The tests used in psychological assessment of children with neurodevelopmental disabilities frequently include measures of intelligence, academic achievement, behavior, adaptive skills, language competence, attention, memory, and perceptual and motor skills (Mahone, 2005).

PURPOSES OF PSYCHOLOGICAL ASSESSMENT

Psychological assessment has five general purposes when used in children with neurodevelopmental disabilities. First, it is used to diagnose or classify. In children, this classification may have direct implications not only for medical and behavioral intervention but also for determining eligibility for special education services in the educational setting and ultimately for determining public policy. Second, it is used for prediction. Psychologists use assessment procedures to help document current skills and behavior and to help predict future patterns of skills and behaviors. In children with neurodevelopmental disabilities, an initial baseline assessment is often obtained early in the child's life, with planned follow-up assessments provided throughout the course of childhood in order to monitor progress and revise predictions and prognosis. Third, the psychological assessment can be used to qualitatively and quantitatively describe needs for intervention. Such interventions can be medical (e.g., use of stimulant medication), behavioral (e.g., behavior therapy), educational (e.g., specialized reading instruction), or physical (e.g., occupational therapy for fine motor needs). Fourth, psychological assessment is used to provide objective data in order to monitor responses to these types of intervention (e.g., introduction of stimulant medication, remedial reading). Finally, psychological assessment is used in research, often as a means to more carefully characterize the attributes of a specific population or to monitor treatment effects.

Psychological assessment is more than administration of psychometric tests (Matarazzo, 1990). A comprehensive approach to psychological assessment draws information from three primary sources—history, observations, and formal testing—while taking into account the unique life circumstances and the chronicity of illness seen in children with neurodevelopmental disabilities (Bernstein & Waber, 1990). Psychological assessment has welldocumented application in medical and educational settings. A recent meta-analysis on the use of psychological assessment procedures based on more than 800 samples concluded that the validity of psychological tests is strong and comparable with medical test validity (Meyer et al., 2001). The authors concluded that clinicians who rely solely on interview in their assessments are prone to incomplete understanding of patient functioning.

Psychological assessment of children with neurodevelopmental disabilities should be carried out by a psychologist who is experienced in working with children with disabilities. Psychologists are typically doctoral-level professionals who specialize in the scientific study of behavior, emotions, motives, and cognition. In recent years, however, psychologists have also begun to study the biological and physiological bases of behavior as a result of the emerging evidence of the interdependence of mind and body—and especially the relationship between brain development and behavior. Psychologists who specialize in working with children with neurodevelopmental disabilities have often obtained an additional 1-3 years of specialized training.

Although there are several branches of applied psychology (e.g., clinical psychology, counseling psychology, school psychology, neuropsychology), the core training in these professional areas is similar. The Health Care Financing Administration published a regulation defining the general term for purposes of participation in the Medicare program. A clinical psychologist is defined as an individual who 1) holds a doctoral degree in psychology and 2) is licensed or certified on the basis of that degree, by the state in which he or she practices, at the independent practice level of psychology to furnish diagnostic, assessment, preventive, and therapeutic services directly to individuals. Specific guidelines and legal requirements typically surround the administration and interpretation of psychological tests, and the user is encouraged to review the specific guidelines outlined by the American Psychological Association (APA) (2000).

NEUROPSYCHOLOGICAL ASSESSMENT

Because children with neurodevelopmental disabilities often have early disruption to brain development, they are frequently referred for neuropsychological assessment. Neuropsychological examinations are performed by psychologists who have undergone intensive training in the clinical neurosciences, including interrelationships among behavioral functions and neuroanatomy, neurology, and neurophysiology. Pediatric neuropsychologists have additional training and experience in the application of developmental and neuropsychological principles to children with neurological disorders. They typically work closely with consulting pediatric physicians and surgeons in the assessment of a child's neurological development and cerebral status. Pediatric neuropsychological assessment differs from school assessments. School psychological assessments are typically performed to determine whether a child qualifies for special education programs or therapies to enhance school performance and hence focus on academic achievement and skills needed for school success. In contrast, neuropsychological examinations diagnose learning or behavioral disorders caused by altered brain function or development (APA, 2001). Neuropsychological examinations are often clinically indicated for children with known congenital or acquired neurological disabilities and for those suspected of these conditions. The neuropsychological examination should be considered a valuable addition to the overall neurodiagnostic assessment that includes other techniques such as the neurological examination and appropriate laboratory tests.

CHALLENGES TO PSYCHOLOGICAL ASSESSMENT

Terminology

Because neurodevelopmental disabilities are conditions that involve early insult to or abnormality in the developing nervous system, the normal development of the nervous system in these children has often been altered, resulting in reorganization and competition for function. Functional impairments in some children are observed immediately, whereas in others, the full range of functional deficits may not manifest until later in life, even though the neurobiological basis of the condition is present earPSYCHOLOGICAL lier (Rudel, 1981). The relationship between biological vulnerability and psychological test performance may reside in the "take-a-test" demands that assessment presents to the child and the extent to which psychometric tests relate to functioning in the real-life (e.g., classroom) setting (Bernstein & Waber, 1990).

Psychological assessment in children with neurodevelopmental disabilities presents the examiner with some unique challenges. Some of the challenge to conceptualization involves clarity in terminology. For example, the term delay signifies slower than expected development in one or more domains of behavior. The category "developmental delay" was specified in the Education for All Handicapped Children Act of 1975 (PL 94-142). Typically, developmental assessment procedures (e.g., the Bayley Scales of Infant Development, Third Edition [Bayley, 2006]) are used to document a delay in ability by documenting a level of cognitive, language, or motor functioning lower than expectation (e.g., 25% below age level expectation). The term delay frequently carries the assumption to parents that their child will catch up to peers following a period of remediation or extra practice. Depending on the timing, cause, and severity of the delay, this expectation may be realistic. In other cases, however (as in a child with intellectual disabilities), the use of the term developmental delay interchangeably with the more specific diagnosis can be misleading. The term deficit can also be misleading to parents because, when used out of context, it is not time referenced. Deficit refers to an absence of, or a significantly impaired performance. It should be used to describe children only when referenced to clearly established expectations for age. In other words, a behavioral or cognitive deficit (i.e., absence of a skill) at one age may be abnormal, whereas at another age it may represent age-appropriate functioning. The term itself implies little about prognosis. Some children with cognitive deficits will continue to have significant impairments relative to peers in the identified area; however, in other cases improvement in skill can be observed, especially in individuals for whom assessment was completed after recovery from deprivation, injury, illness, or trauma (Waterhouse, 1994).

In children with neurodevelopmental disabilities, parents and physicians often have concerns regarding a child's behavioral regression or decline in functioning. In these instances the psychological assessment can provide objective psychometric information to differentiate a decline in relative standing to peers versus a true loss of skill. This comparison is made by comparing a child's raw score performance on one or more standardized tests with his or her score raw performance on the same tests at a later point in time. True regression or loss of skill should not be confused with failure to keep pace in skill acquisition in relation to peers, which may be present in children with neurodevelopmental disabilities and is generally observed when environmental demands increase at a faster rate than skill development. Multiple Assessments and Treatments Determining how and when a child has been previously evaluated is also essential to accurate interpretation of assessment data. Indeed, most children with neurodevelopmental disabilities undergo multiple assessments and treatments by multiple providers from several disciplines (e.g., speech-language pathology, occupational therapy, physical therapy). Usually, these providers perform their own separate assessments. Determining what assessments have been done previously helps to avoid redundancy and minimizes problems in interpretation due to factors such as practice effects, especially because there can be considerable overlap in procedures. To address this problem, the interdisciplinary model is frequently used in centers providing care for children with neurodevelopmental disabilities, and the psychologist's role is to contribute specific expertise to the team, while deferring to other members for focused assessment of other domains (e.g., language, motor skills). In this model, members of the team complete coordinated diagnostic assessments separately, then (usually through case coordination or a team meeting) integrate information formally before formulating impressions and recommendations (Bondurantz-Utz, 1994). Sensory, Motor, and Behavioral Impairments Children with neurodevelopmental disabilities often manifest sensory, motor, or behavioral impairments that can affect test administration. Obtaining an accurate history about these impairments prior to assessment allows the psychologist to plan an appropriate test battery. Given the wide range of assessment procedures available, the psychologist may be able to choose tests most appropriate for the child's functional level, attention span, motor needs, and vision/hearing needs. Accommodations may be required if the child's primary mode of communication is through an augmentative communication device (computer or pictorial).

Using a developmental model, a child's behavior can be considered to represent the interaction between his or her attributes and the environmental demands and supports. In some neurodevelopmental disabilities, this interaction can change dramatically as the child progresses through school, even though the neurological condition is static. For example, for children with neuromotor impairment (e.g., cerebral palsy, spina bifida), the additional motor demands and the expectation for greater written expression in middle school can contribute to fatigue and detract from academic performance (e.g., propelling wheelchair between different classes, navigating hallways full of peers, transporting books between classes). The increase in motor demands and associated fatigue can also create a state in which the adolescent has less-than-optimal alertness for the classroom activities, again leading to the appearance of "distractibility" and even greater difficulty with sustained performance and completion of assignments.

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