User talk:Kevinhilke/sandbox

Annotated Bibliography

(1) Isabelle Rapin, the author of "Diagnostic Dilemmas in Developmental Disabilities: Fuzzy Margins at the Edges of Normality: An Essay Prompted by Thomas Sowell’s New Book: The Einstein Syndrome," published in the Journal of Autism and Developmental Disorders, is a self-professed "academic child neurologist" who has "lectured and written extensively about the classification of developmental disorders, the neurologic basis of autism, and its language disorders." She holds appointments in the Saul R. Korey Department of Neurology, the Department of Pediatrics, and the Rose F. Kennedy Center for Research on Mental Retardation and Human Development at the Albert Einstein College of Medicine in Bronx, NY. This unquestionably qualifies her to comment on Sowell's thesis, and indeed she is the only academic in pertinent fields to have directly and explicitly addressed Sowell's book in a peer-reviewed scholarly journal. Her intended audience appears to be other academics, particularly in the fields of child neurology, neuroscience, and developmental psychology. She wishes to acquaint her audience with Sowell's work because it raises "fundamental questions about the measurement and causation of complex human traits and behaviors, the classification and diagnosis of these complex behaviors, the differential diagnosis in late-speaking toddlers and preschoolers, and the boundaries of an autistic spectrum disorder."

For Rapin, Sowell contends "that speechless children with demonstrably superior nonverbal problem-solving skills and mathematical ability whose language comprehension is adequate have a favorable outlook with or without intervention, even if their social skills and behavior are suboptimal." She agrees with Sowell that "providing a definite"--and especially negative-- "prognosis in very young children is hazardous because it is so subject to error," but maintains that "early, individualized intervention is mandatory for children, no matter how bright, whose language comprehension is inadequate, and for those with troublesome behavioral traits bordering on or indicative of an autistic spectrum." Rapin then pivots, using the ambiguity of the borders between "Einstein" children and autistic children to assert that "Developmental disorders are not diseases that one does or does not have but are behaviorally defined dimensional traits along a continuum with fuzzy edges and a wide range of severity. Therefore, there is no crisp partition between normalcy and disorder, and between disorders with different names yet shared features, even when there is no controversy regarding the identification of prototypic exemplars." Developmental disorders, she continues, "are the expression of extremely complex multigenic influences on brain development," making for infinitely idiosyncratic individuals each of whom--even the supposed Einstein children--requires an equally individualized, largely educational intervention to boost verbal ability.

(2) Miraim Kauk, the author of an article entitled "Einstein Syndrome" which was published in the July/August 1994 issue of Teaching Home magazine, is a homeschool teacher and the mother of a child with Down syndrome. She uses the term in a way that is similar to Sowell's usage--both posit it as an alternative to more depressing medical diagnoses--but whereas for Sowell the term is in contrast to autistic spectrum diagnoses, for Kauk it stands in contrast to Down syndrome. Kauk is "convinced that the biggest handicap Down syndrome children have is the low expectations of their parents." She contends that so long as parents believe in their children's potential to achieve normal functioning, such achievement is possible. Her evidence is limited to the anecdotal, and in any case she does not address the preternatural mathematical and musical (etc.) abilities of children with verbal developmental lags, so her article, however confusingly named, is irrelevant to Sowell's work.

--Kevinhilke (talk) 16:58, 29 November 2011 (UTC)

(3) In February of 2000, Thomas Sowell took to the pages of the Jewish World Review to defend his first book on this subject, 1998's Late Talking Children. The book is based, Sowell tells us, "on research on 46 late-talking children and their families, scattered over 24 states." "Only 14 pages are about my son," he continues, "compared to more than 70 pages about the unusual patterns found in this group of children and in their families." Sowell claims that Late-Talking Children "exposed the needless anguish inflicted on trusting parents by false diagnoses by various kinds of 'experts' and the ruin of bright children's education by their being placed in classes for retarded or autistic children on the basis of these mistaken diagnoses," and "also questioned whether 'early intervention' is always advisable for all late-talking children."

--Kevinhilke (talk) 20:37, 1 December 2011 (UTC)

Rapin Annotations

50: Sowell states that his first book on this subject, Late Talking Children (Sowell, 1997), provoked public criticisms from the American Speech and Hearing Association.

50: Both books raise fundamental questions about the measurement and causation of complex human traits and behaviors, the classification and diagnosis of these complex behaviors, the differential diagnosis in late-speaking toddlers and preschoolers, and the boundaries of an autistic spectrum disorder. These issues are well-known to some professionals but may not be as familiar to others.

50: Before starting this essay, I wish to introduce myself so that there is no mistake on my background. I am an academic child neurologist who has seen in consultation or as part of clinical research projects hundreds of children and fewer adults on the autistic disorder spectrum, some of whom raised in my mind the very questions addressed in this book. I have no formal training in epidemiology, population genetics, “hard” neuroscience, or other fields relevant to some of the issues Sowell raises, but I have lectured and written extensively about the classification of developmental disorders, the neurologic basis of autism, and its language disorders.

50: Sowell is the father of a child who spoke late and turned out to be very bright, a precocious chess player, and a professional computer programmer. According to the jacket of the 1997 book, Sowell is an economist who writes a nationally syndicated column and a column for Forbes, and who has published several books. He wrote about his son John in one of his columns. This prompted many communications from parents with children who also spoke late and turned out to be very bright or exceptionally bright (the book does not provide a definition of the degree of brightness required to be included in his sample), many of whom had significant behavior problems, at least in early childhood. The original book was about the same 46 children Sowell discusses in his current book. He collected information from the children’s parents through questionnaires, which are included in the Appendices in both books, and though letters and telephone interviews.

50: The current book provides much the same message as the first but adds information about a larger independent sample—I gather also parent-referred—of 239 children provided by Dr. Stephen Camarata, a professor of speech pathology at Vanderbilt Medical Center. Dr. Camarata intends to follow his sample to adulthood, whereas information about age at description of the Sowell sample is not stated. Although the author describes his second book as a research study, the quantitative data on both samples are tabulated without statistical analysis.

50: The name Einstein syndrome which the author chose for these children indicates that he is focusing on exceptionally bright cohorts, often with talent for mathematics. He acknowledges that indices of brightness in a toddler or preschooler are perforce based on parents’ anecdotal reports of exceptional analytical abilities, because standardized tests may not capture such abilities and the children he describes were notoriously poor test takers because of their limited language, frequent lack of compliance, and the often unsuitably low level of the skills tested.

50-51: [The book] is definitely not about all late speakers who have average, albeit disparately better, nonverbal than verbal cognitive abilities. The prevalence of IQs in the 140 to 180 range is very small (I assume that is the range the author is writing about, although he provides no figure for the entire sample), considerably less than 1% of the normal population, and presumably much smaller still among children with developmental problems.

51: I fear that one message a reader unfamiliar with the problems raised in this book will take home is that intelligent children who do not speak at the expected age are likely to improve with maturation alone, and that the utility of interventions offered to hasten talking is marginal at best.

51: Sowell points out that what characterized the children he is describing was delayed and inadequate verbal expression, rather than impaired comprehension.

51: A second message the unfamiliar reader may take home is that behavior disorders that Sowell reports in some children in the sample (e.g., fierce temper tantrums, obsessive insistence on self-selected activities, rigidity, noncompliance, preference for solitary play, excessive shyness, selective mutism, and a predilection for interacting with adults rather than peers) are but the consequences of their inadequate verbal skills. [...] At issue here is the labels we assign to children with such behaviors, and when it is appropriate to bring up the possibility of an autistic spectrum disorder diagnosis, a term I prefer to PDD.

51: Sowell reports that, early on, some of the children were given a diagnosis of PDD or even of autism (I take it he means DSM Autistic Disorder or classical autism). He considers this diagnosis ludicrous for children who were affectionate to their parents, had exceptional non-verbal analytic skills and a sense of humor, and grew up to be normally functioning adults.

51-52: Sowell comes down hard on the long questionnaires required for the “objective” diagnosis of an autistic spectrum disorder to the exclusion of personal observation in a child-friendly venue that would enhance the probability of seeing the child’s best performance. And he deservedly castigates consultants who are skeptical of parents’ reports of exceptional skills at home and too rushed by other demands to take the time to find out on their own of what the child is capable. I reiterate that to be on the autistic spectrum it is not enough to score so many “yes” answers on a list; these characteristics must impact the person’s function in every day life, which is why questionnaires alone, even though very useful, need corroboration by direct observation.

52: From what Sowell says, it seems that few or none of the children in his book satisfied the criteria for classic autism (Autistic Disorder), but I am not persuaded that not one of them fulfilled criteria for PDD-NOS. Why worry about this issue? The reason is that much of the public is confused about PDD, PDD-NOS, and autism; the public is often unaware of the very broad range of severity of the autistic spectrum and assumes that a PDD diagnosis necessarily implies an untreatable condition, mental retardation, and a bleak future. Much of the public does not know that being gifted does not preclude a diagnosis of an autistic spectrum disorder.

53: Agreement among evaluators about diagnosis declines rapidly the further away the individual is from the center of the distribution. In other words, quantitative diagnoses, like those of Autistic Disorder versus PDD-NOS, are based on agreed-upon but arbitrary threshold cuts in a curve, for example at 1, 2, or 3 stan- dard deviations away from the mean of the population. Language ability is distributed in this manner, as are cognitive skills, musical talent, sociability, as well as height, weight, muscle strength, and skin color. The crux of the matter is that there is no hard categorical distinction between the edges of a dimensional diagnosis and the edges of normality, or between the tails of one normally distributed characteristic and some others.

54: The explanations Sowell offers for his observations of extremely advanced skills for solving puzzles, picking locks, or calculating in the very bright but late-speaking children whom he describes rest on widely accepted, if somewhat oversimplified, theories about brain development and function. He acknowledges the help he received from Dr. Steven Pinker, a developmental language and cognitive neuroscientist at MIT, and from his students who provided him with recent neuroscience evidence from the literature. In short, the theories he espouses state that very early maturing talent, in this case analytical skills, monopolizes developing brain resources at the expense of later-developing skills, in this case language. Sowell offers as evidence Witelson and colleagues’ report (Witelson, Kigar, & Harvey, 1999) that Einstein, who was a late speaker, had a brain with a uniquely overdeveloped left parietal gyrus, a critical region in networks concerned with higher order visual-spatial analytic abilities, not language. Developmental language disorders (and other developmental disabilities, especially autism) are more prevalent in boys. This gender difference is widely attributed to the fact that boys generally have better spatial skills than girls (Baron-Cohen & Hammer, 1997). Girls’ brains mature somewhat earlier than boys’ and girls tend to speak earlier. Sowell quotes studies suggesting that the left hemisphere matures later than the right and that the allocation of brain resources is more strongly lateralized and tightly concentrated in boys than in girls, in whom abilities such as language depend on more widely distributed networks than in boys.

55: Sowell makes the very strong recommendation that when parents do not agree with an evaluator’s opinion or question the competence of the assessment, di-gnostic evaluations may need to be repeated. What he stresses, and I strongly agree, is that the evaluations must be independent lest the opinion of one examiner color the opinion of another. This implies that parents not show a second consultant data from a first consultant, psychologist, or speech pathologist who may not be an expert in the evaluation of preschoolers.

55: He is extremely critical of the early educational and remedial establishment, which he accuses of seeking clients, which is not consonant with my experience and that of many parents who find a dearth of good preschool programs. There is a literature from language specialists such as Whitehurst (1994) that supports Sowell’s contention that early delay in the emergence of expressive language in the face of demonstrably adequate comprehension generally has a good prognosis. These investigators state that preschoolers with expressive disorders may not require intervention before 4 years of age, provided there are no other problems such as hearing loss, motor/oromotor deficits, low intelligence, significant behavioral problems, or a seriously deprived environment. Because federal law mandates intervention for all developmental disorders, the question arises whether, besides cost, there are downsides to referral for early education. Sowell opines that early intervention may clue-in these bright children that there is something wrong with them, tarnish their self-image, and that inadequately stimulating school programs will bore them, send the message that mastery requires no effort, and waste time they could spend more profitably developing their special talents.

55: I do want to stress that significant social and behavioral issues must not be ignored, because intelligent, individualized social and organizational skills training may make a difference for an exceptionally bright but ineffective adult, and between a child who is shunned by peers and a better-adjusted child who will not miss out on the fun of interactive play. It is much easier to intervene in the early school years than to wait until adolescence when behaviors become unacceptable and the chances of success wane. This issue is not limited to high-functioning children on the autistic spectrum; it also applies to some of the exceptionally bright, mathematically gifted but socially inept late-talking children who are the focus of Sowell’s books.

56: I think that the book raises very important fundamental issues about the fuzzy edges of diagnoses based on quantitative criteria. Because human behavior has so many facets, it is not surprising that traits to which we give different names because we have divided them along some agreed-upon dimension may overlap or share characteristics. Behaviorally defined traits and diagnoses tend to be regarded as more reliably defined than they are, and as more enduring than some of them turn out to be. This provides support for making tentative diagnoses and eschewing potentially damaging labels in uncertain cases.

56: On the other hand, I feel that the author gives short shrift to social deficiencies which, in some of the children he describes, deserve to be taken seriously and addressed promptly. Problem behaviors did not necessarily all go away, even in the brightest of my patients, some of whom clearly warranted the diagnosis of an autistic spectrum disorder, if not classic autism, not only at preschool but on follow-up. I hope that his severe appraisal of therapists and educators of preschool children is overly pessimistic. Most of all, I fear that these optimistic books about a highly skewed sample of unusually gifted children whose developmental trajectories differ so remarkably from those of other preschoolers with language and other developmental problems will give false hopes to some parents of truly handicapped children who have preserved, or even exceptional but narrow, skills, and that the books will discourage them from promptly seeking an effective educational setting that will help their children develop optimally, even if not normally. Finally, I hope that the longitudinal study he states that Dr. Camarata is engaged in will provide more systematic data than the limited and somewhat anecdotal data collected thus far.

--Kevinhilke (talk) 21:36, 1 December 2011 (UTC)