Understanding Learning and Related Disabilities

Inconvenient Brains

Martha Bridge Denckla

• Publisher: Routledge
• Year: 2018
• eBook ISBN: 9780429759635
• Topic: Psychology
• Subtopic: History & Theory in Psychology
• Index: Psychology

Children with developmental disabilities inhabit a gray zone: they live and learn under normal conditions in some aspects of their lives, while their "inconvenient brains" present a range of challenges in other school and life contexts. Dr. Martha Bridge Denckla provides parents and educators with general knowledge, research findings, and practical recommendations about a variety of these developmental conditions, including dyslexia, dyscalculia, ADHD, autism spectrum disorder, problems with motor coordination, and executive dysfunction. Inspired by her efforts to explain these conditions to parents over 45 years of clinical practice, she provides a science-based understanding of the issues in an accessible format. She uses the science of cognitive and behavioral neurology to help readers understand how the interrelationships of brain, environment, and behavior produce these developmental disorders, and to provide a basis for parenting and education programs based upon understanding how variations in brain development should guide plans for what is taught when to whom. Such developmentally appropriate, evidence-based, differentiated instruction within general education can diminish the demand for separate special education, and will thus serve all kinds of brains, whether "typical" or "inconvenient."

1

Introduction

Who am I? I am a recently retired academic neurologist, which means a person who has always had a position at an institution at which research, teaching, and patient care are requirements. I am a Professor Emerita from the Department of Neurology at the Kennedy Krieger Institute, part of Johns Hopkins University School of Medicine in Baltimore, Maryland. My training took place mostly in Boston, where I attended Harvard Medical School, trained in internal medicine at the Beth Israel Hospital affiliated with Harvard Medical School, and then trained in neurology at Boston Veterans Administration Hospital, with a famous neurologist, Norman Geschwind, who revived the field of the cognitive and behavioral subspecialty of neurology. I trained in neurology (one year of which was at Georgetown University Medical Center in the District of Columbia) and (in Boston) an added year of fellowship that was devoted to cognitive and behavioral neurology; this is the subspecialty of neurology that involves the overlap with psychology and to some extent with psychiatry. (Informational note: everyone who becomes a specialist in neurology actually passes the examination of the American Board of Psychiatry and Neurology, with [N] specified after the certification. Neurologists are a minority group, which is reflected in our relatively small influence on the Diagnostic and Statistical Manual.)

The field of neuropsychology, which means psychology that refers its assessment data back to the brain as the basis of behavior, was in its infancy when I trained in neurology; and indeed there is tremendous overlap between the careers of a cognitive/behavioral neurologist and a neuropsychologist. (I am a past president of the Cognitive/Behavioral Neurology Society and also a past president of the International Neuropsychology Society.)

After I was trained and went to my first position in New York in the Neurology department (with a secondary appointment in the Psychiatry department) at Columbia College of Physicians and Surgeons, I was asked by Dr. Sidney Carter to spend part of my time attending the Child Neurology Clinic. Since I had trained exclusively with adult patients, and my knowledge was about acquired rather than developmental conditions, I was somewhat taken aback by this invitation, but I did start to go every single week to the Child Neurology Clinic, in which Dr. Sidney Carter asked me to see every child whose reason for referral to the clinic is either “not talking as expected” or “not learning how to read as expected.” For a number of years, I continued to work in that clinic and also to participate in doing neurological exams included in a large study that was going on in many cities in this country; this was a multisite study of over 50,000 pregnancies and their outcomes, children followed to age eight years. I was there for the seven- and eight-year-old neurological exams, so that was another way in which half of my time became distributed towards children rather than towards adults.

I continued to do consultations on adult patients who had sustained strokes or head trauma resulting in “aphasia” (meaning a loss of language capabilities) and other related cognitive deficits; my first publication, co-authored while I was a fellow, was on the subject of “dyscalculia” (loss of ability to do calculations mathematically). Then came the moment when my career veered sharply to the pediatric side; I applied for research funding with applications involving adults, aphasia, or other cognitive deficits after strokes, and I also applied for research funding concerning “dyslexia” (specific developmental reading disorder) in children. What followed was an example of “Sutton’s Law”; namely, I received approved funding for work on children with dyslexia but did not succeed in obtaining funding concerning adults who had suffered brain damage due to strokes resulting in cognitive deficits.

Then I teamed up with a neuropsychologist who had been working on those children who were in those days referred to rather bluntly as “brain-damaged.” This was Rita G. Rudel, Ph.D., who really gave me my “on the job training” in conducting research. Prior to working with Dr. Rudel, my own publications had been single or multiple case reports about patients; these had not really become sophisticated, well-designed research projects involving groups of children comparisons. With Dr. Rudel, I embarked on a series of studies of children with reading problems, and we contributed to a wave of research publications that emphasized the language basis for difficulty in learning how to read (as opposed to the visual emphasis that still prevailed on the basis of earlier concepts, when nineteenth-century accounts of reading difficulty had used such terminology as “congenital word blindness”). At this time, encouraged by Dr. Rudel, I leaned heavily upon my neurological background to embark upon studies of children’s motor coordination development, at first as a rather general tool to implicate the brain in a clinical sense when we were in those days asked about the diagnosis, “minimal brain dysfunction.” This was later refined, again with Dr. Rudel, to be used as a discriminative tool when attempting to understand “hyperactive boys” compared to their typically developing peers. (See the chapter that discusses Attention Deficit Hyperactivity Disorder.) Besides the motor coordination data collected and used in research during those early years, the major achievement of my collaboration with Dr. Rudel was the creation of a test called the Rapid Automatized Naming Test, which I designed based upon classical neurological training. (In the literature about loss of reading ability after strokes, my own great teacher Norman Geschwind described color naming difficulties associated with “pure alexia without agraphia.”) That Rapid Automatized Naming Test has gone through two generations of further research elaboration and application by educational researchers and neuropsychologists, has been published for general use, and stands as one of my contributions to the understanding of reading. (I think of this as an example of “beginner’s luck.”) Once I had begun to see pediatric patients clinically and engaged in research concerning children’s developmental disorders, I gradually ceased to have time to consult and teach on any but a handful of very dramatic cases in adults.

The subsequent positions I have held and during which time I have continued to work in research and do clinical work concerning children with developmental disabilities of the type we refer to as “high prevalence, low severity” (what I call “inconvenient brains”) have been during a return to Boston Children’s Hospital affiliated with Harvard Medical School and in the Developmental

Neurology Branch of the National Institutes of Health, within which what was then called NINDS, in Bethesda, Maryland.

For the past 30 years, I have been a Professor of Neurology, Pediatrics, and Psychiatry at an ideal place to pursue these strands of research and clinical work, the Kennedy Krieger Institute, an institute devoted to children’s brain issues, which is affiliated with the Johns Hopkins University School of Medicine in Baltimore, Maryland. This ideal position fostered my continuation of research that leaned heavily on what I had learned clinically and evidence gathered from my research during that decade in my first position at Columbia’s Neurological Institute.

For the past 10 years of the 30 years of my happy work life at the Kennedy Krieger Institute, I became involved with the Neuroeducation Initiative started by Dr. Mariale Hardiman at the Johns Hopkins University School of Education. For five years I taught in a masters’ certificate program at the School of Education in a program designed with Dr. Hardiman, by my co-teacher Dr. Mary Ellen Lewis, M.D., Ed.D., a course entitled “Mind, Brain, and Learning.” After financial difficulties there resulted in my departure from that program, I was fortunate to be a participant at Kennedy Krieger Institute in another opportunity to teach educators, this time educators who have been classroom teachers and are aiming to move up into more supervisory positions. This was created by the involvement at Kennedy Krieger Institute of Dr. Nancy Grasmick, who had been for 30 years the Superintendent of Education for the entire State of Maryland. Dr. Grasmick, Dr. Goldstein, and Dr. Mark Mahone created the Center for Innovation and Leadership in Special Education, where three or four fellows were selected each year for a full time rigorous education; I was extremely proud and delighted to participate as a faculty member in this Center.

Most of this book is based upon clinical “feedback” sessions of explanation, interpretation, and advice to parents of youngsters whom I evaluated, plus sessions sometimes with adolescents themselves, and upon the ten years of lectures to educators. Questions asked by some of these clinic attenders and educators inspired some of the more colloquial explanations I have used; but I have also used some formal terminology from neurology or related sciences when I think it is necessary for clarity.

Why am I writing this book? At first, the reason for writing this book was in response to parents whose children I had evaluated in my clinic for their school problems. I would hold 90-minute explanatory and advisory sessions with parents one week after the evaluation of their children had taken place. Some parents brought tape recorders (or more recently their smart phones) to record my explanations, but some of them would say to me, “Have you written this down somewhere so I could review it and share it with other family members or friends who have children with similar problems?”

For many years my clinic was held only one day each week and I was doing research for much of the rest of my working time, so I would smile and say that I was too much involved in writing research grant proposals or the resulting funded research publications. As I began to teach educators, they too asked whether the lecture I had just given them, PowerPoints and all, could be found in written form for them to be able to refer back to or share. It was only during the past few years of my career when my research involvement had decreased that I myself began to feel the need to write down these explanations, interpretations, and advice for parents, as well as for any teachers who might be as interested as were those whom I had been teaching either at the School of Education or the Kennedy Krieger Institute.

Thus, I decided to write a book in the first person, just as if I were talking with parents. For decades, I did this in conferences in clinic; I gave parents detailed descriptions of what I had seen in their children, followed by explanations of what the data implied. I presented to parents what evidence existed for a certain way of understanding or viewing the problem with which they and the child were coping. Finally, I tried to guide them towards sensible interventions and away from “alternatives” that over the decades came and went as fads, discredited by researchers but revived because each new generation of parents would be susceptible to superficial plausibility of what I call the “neuromythology.” (Revived but discredited claims are accessible and amplified by the Internet. Speculative explanations of brain-based problems and of quick solutions or easy answers to their children’s problems still proliferate.)

Over the past decade there emerged a larger purpose in my writing this book; for two decades there had been changes in our system of education, starting with the concept of “inclusion” in regular classes of the majority of the kind of children with “inconvenient brains” whose problems I have focused upon. I had begun to realize that an understanding of these unusual and substantial minorities of students, as well as an understanding of all of the variations of typical development in the school years K-12, had failed to be taken into account in educational policies and “reforms.” I felt the need to write about my clinic attenders within the larger context of K-12 education for all students, both typical or those with “inconvenient brains.” Both these somewhat different learners seen in my clinic and all students deserve to be taught in an educational system that is based upon and takes account of evidence-based developmental science, derived from at least three disciplines, neurology, psychiatry, and psychology, with a background of sociology; we know how much the environment influences everything about the child, the environment starting with epigenetic influences that start in the womb during the mother’s pregnancy. My motivation for writing this book has expanded; I now want to use the topic of “the inconvenient brain” to introduce people to many kinds of “neurodiversity” (meaning variations in brains, either in developmental timetable or in lifelong brain architecture or both) that exist and should be served in the educational landscape, truly accepting universal design for learning as a philosophy and a program.

It is my hope that not only will the book be useful to parents and other relatives or caregivers of children with “inconvenient brains” and to teachers of these children, but will be useful to a wider group (practically everybody) who is concerned with the education of our society’s children and adolescents.

When I first set out to write this book I was going to call it “The Optimistic Fatalist,” so I suppose I should end this Introduction by explaining what I meant by that and why I changed to the subtitle “Inconvenient Brains.” What I meant by “The Optimistic Fatalist” was that I was “fatalistic” about the fact that we can do very little about the fundamental architecture or timetable of development of the brain, but that I am cheerfully “optimistic” about how we can optimize everything at home, in school, and in the larger community in order to allow that brain to be molded, accommodated, and individually educated to live up to its best potential. That potential does not always allow the possessor of the “inconvenient brain” to live up to what others would prefer him or her to become across the lifespan or to meet a rigid timetable of academic achievement, so that I advocate a more individualized orientation to attaining a good life; the “inconvenient brain” itself may be quite different from what would succeed comfortably in school achievement or fulfill the dreams of parents, in much the same way that a parent cannot plan to raise an athlete or a musician. The child’s brain is not a tabula rasa to be entirely “written upon” with the scripts of family and society, but given its own characteristics, both in rate of development and in architecture, it can be “optimized.”

Now I turn to explaining how I arrived at “Inconvenient Brains.” I polled audiences for this title as compared with the title “The Optimistic Fatalist” at every event at which I could pass out slips of paper to parents and teachers; the overwhelming vote was in favor of “Inconvenient Brains.”

Upon receiving the winning results for “Inconvenient Brains,” I realized how much I myself liked it, because I really do not like the term “disabilities” or “disorders” applied to the problems faced by the youngsters to whom I have devoted my clinical and research career for over 40 years. To me these youngsters have different brains in terms of either the developmental timetable or the architectural variations that are permanent in their brains; their brains are “inconvenient” for schooling and, less commonly, for certain societal demands, but really do not in my mind demand to be called “disabled” or “disordered.” I’ve had to explain for years in my clinic that for the purposes of qualifying for services, such terminology as “disability” or “disorder” had to be employed as the “bottom line” of my report, adorned with some number that came out of an official document like the DSM-5 or from the list of special education codes used by systems of education; but that all of the research, all of the reading I had been able to engage in, and my own clinical experience over the decades had led me to this other position, best expressed by the term “inconvenient brain.”

Finally, I would hope that readers will not simply read one chapter that seems to pertain to a diagnosis or a youngster of interest to them but will read most of the chapters, especially those that cover more general information about important brain systems and their developmental trajectories (motor, language, executive function) and the chapters on “Neuromythology” (the avoidance of unsubstantiated explanations and their linked therapies) and “Promotors and Enhancers” (making the case for the benefits of sleep, play, foreign languages, and music).

My final chapter does venture into policy, but is nonpartisan in its arguments. Advocacy for “my kids,” the ones with the “inconvenient brains,” is impossible without advocacy for evidence-based, high quality public education for all.

2

Brain Development Relevant to “Inconveniences”

This chapter will not attempt to be comprehensive in discussing brain development, but is rather an overview that will focus more specifically on the development of those parts of the brain relevant to education and more susceptible to the kinds of variations in architecture or in timetable of development that are involved in an “inconvenient brain.”

Prenatally, by six to seven months out of the nine months of the pregnancy, 70 percent of the brain cells have migrated from the interior of the brain where there is a germinal matrix (a sort of storehouse of cells called neurons) and are settled down in organized layers and columns of the cerebral cortex. There is a genetic blueprint for the cortical folding (the wrinkled look of the cerebral cortex) that is similar but not identical in every person. It can be said that “brains are like faces.” (When I started to do research using neuroimaging and sat with colleagues trying to become reliable in relation to each other in outlining and measuring certain areas of the cerebral cortex, we faced difficulties due to the architectural variations from one brain to another.) Just as one can say that most people have the same itemized features on their faces, the arrangement of these features is highly individual, and except for identical twins is remarkably distinguishable, one person from the other. Thus, there is a general genetic blueprint for the folding or wrinkling of the cerebral cortex, but with apparently limitless individual patter...

Table of contents

• Cover
• Half Title
• Title Page
• Copyright Page
• Dedication
• Table of Contents
• About the Author
• Acknowledgments
• 1 Introduction
• 2 Brain Development Relevant to “Inconveniences”
• 3 Promoters and Enhancers of Learning and Development
• 4 Specific Language Impairments
• 5 Motor Coordination Factors Contributing to School Problems
• 6 Executive Function
• 7 Autistic Spectrum Disorder (ASD)
• 8 Attention Deficit Hyperactivity Disorder (ADHD)
• 9 Dyslexia
• 10 Math and Miscellaneous Learning Disabilities
• 11 Neuromythology
• 12 An Inconvenient Brain in the Context of Changes in Educational Environments
• References
• Index