Assessment and Diagnosis of Neurodevelopmental Disorders in Young Children

A Practical Guide

Neil Nicoll

• Publisher: Routledge
• Year: 2021
• ISBN:
  9781000441895
• Edition: 1
• Topic: Psychologie
• Subtopic: Geschichte & Theorie in der Psychologie

This essential guide is a research-based practical handbook for assessing global developmental delay and other neurodevelopmental disorders in young children. It explains diagnostic, support, and treatment services available for children and their families, clarifying psychological and medical terminology, and global legislative and societal factors relating to assessment.Designed as a comprehensive compendium for student and practicing psychologists, it offers an introduction to historical perspectives around child development and developmental disorders, and how these have affected our understanding of neurodevelopmental disorders. It explains professional and ethical considerations surrounding the clinical practice of developmental assessments, and focuses on the crucial importance of understanding and supporting the parental experience of assessment and diagnosis. Key topics covered include: definitions and descriptions of genetic and chromosomal disorders and neurodevelopmental disorders; eligibility criteria for support and assistance; the Griffiths Scales, Bayley Scales, and other notable assessments for young children; autism spectrum disorder; the process of assessment and diagnosis, diagnostic tools, and report writing.

Including a chapter of illustrative case studies of children with developmental disorders, this book will be essential reading for educational, clinical, and developmental psychologists working with children and their families, as well as post-graduate students training in the field.

Part I

Neurodevelopmental disorders in young children

DOI: 10.4324/9781003169925-102

This part explores the historical, social, scientific, and political influences which defined and categorized neurodevelopmental disorders in young children, and led to coherent and systematic approaches to assessment, diagnosis, treatment, education, and support for young children with disordered or delayed development. Part 1 then explores the two universally accepted classificatory systems for defining the various neurodevelopmental disorders:

• The Diagnostic and Statistical Manual (DSM)
• The International Classification of Diseases (ICD)

This section also outlines basic concepts of genetic disorders and syndromes, and provides descriptions and historical perspectives on a range of such disorders and syndromes.

1 Historical overview of neurodevelopmental disorders in young children

DOI: 10.4324/9781003169925-1

Children are born every minute of every day in every corner of the world, to a multitude of different families, from differing ethnic origins, social and socioeconomic circumstances. There is a universal expectation that newborn children will grow, develop, thrive, and mature to become healthy and well, able and productive, independent and inquisitive, social and, in a vast variety of ways, successful. However for many families, these dreams and expectations are challenged and changed from an early age, sometimes from the point of birth or even during gestation, when their beloved and cherished offspring do not develop in the manner anticipated. They may be born with genetic defects or anomalies, congenital medical conditions, or predispositions. Or they may initially appear to be following expected growth and developmental trajectories only to experience unexplained delays, regressions, or deviations in their progress. Children who experience and manifest these atypical developmental patterns are frequently referred to as having “neurodevelopmental disorders”, whether arising from genetic inheritance or anomalies, medical conditions, or through unknown etiology.

Nowadays such children can be “assessed”, “diagnosed”, and categorized through a plethora of sophisticated processes: genetic tests, both in utero and in early life, MRI and CT scans, blood and metabolic analyses, and systematic observation, measurement, and assessment processes including psychometric testing of developmental milestones, intelligence, and social/emotional functioning and status. In developed and even developing countries, access to these services is taken for granted, as are follow-up programs, therapies, and teaching/learning strategies specifically designed to “intervene early” in the difficulties and deficits arising from these various conditions.

So too is it an increasing expectation that such assessment, diagnostic, and “early intervention” services will be available and financed through the public purse. Government funded and supported assessment, diagnostic, and intervention programs now proliferate in most developed and developing nations as a matter of social health and welfare policy. The prognoses for children with chronic health and medical conditions, developmental delays and disorders, are now better than ever, but this has not always been the case. The history of progression towards “scientific methods” of assessment and diagnosis, treatment, and care, along with the assumption of responsibility by nation states and governments for these advances and services, can tell vital stories and teach important lessons.

The “story” of these trends can perhaps be seen to begin in the eighteenth century. Society has always had an interest in observing the behaviours of others, particularly when behavioural traits would appear to be “different”, “unusual”, or maladaptive. However the application of “scientific method” to such observations of human behaviours, abilities, and foibles, is a relatively recent historical phenomenon. Individual case studies through detailed observation reflected the growing curiosity in natural variation, and perhaps the most famous illustration of early “one-to-one” observational practice is embodied in the story of the “Wild Boy of Aveyron” (Figure 1.1).

Figure 1.1 The “Wild Boy of Aveyron”.

Victor of Aveyron was a French “feral child” who was found at around the age of 12. Upon his discovery, he was given to many people to stay with, but continually ran away. Eventually his case was taken up by a young physician, Jean Marc Gaspard Itard, who worked with the boy for 5 years, giving him the name Victor. Itard was interested in determining what Victor could learn and devised various methods to teach the boy words and record his progress, including the equivalent to modern-day “flashcards”.

Victor is estimated to have been born around 1788, a normal child at birth, but neglected by his alcoholic parents from an early age. He then left civilization and fended for himself in the wild. On 8 January 1800, he emerged from the forests on his own. His lack of speech, his food preferences, and the numerous scars on his body suggested that he had been in the wild for most of his life. A local abbot and biology professor examined him. The local government commissioner also observed the boy and wrote there was “something extraordinary in his behaviour, which makes him seem close to the state of wild animals”.

Despite his diligent efforts, Itard could not teach Victor to speak. He wondered why Victor would choose to remain silent when he was not deaf. Victor also did not understand tones of voice. Itard proclaimed “Victor was the mental and psychological equivalent of someone born deaf-and-dumb”.

Today there are hypotheses that Victor, though born normal, developed a serious mental or psychological disturbance before his abandonment. Precocious schizophrenia, infantile psychosis, or autism are amongst the technical terms that have been suggested as retrospective diagnoses.

The nineteenth century was a time of great and sometimes controversial scientific progress and discovery, and never so much as in the growing exploration of the nature of humanity itself. Charles Darwin’s On the Origin of Species was published in 1859 and sent shockwaves through the scientific and religious orthodoxy. Particularly contentious was the proposition that humans evolved from other animal life forms such as apes, rather than springing into existence de novo by divine creation.

Humans and animals were increasingly the subject of scientific scrutiny, and in 1866 Doctor John Langdon Down, an English physician, described the characteriztics of a condition which came to be known as Down Syndrome. Genetic science and testing was not available at that point in history and so Down’s descriptions were associated with physical characteriztics of his subjects, and he made the observation, in language and idiom consistent with the times, that people with Down Syndrome were displaying a “reversion to a primitive Mongolian ethnic stock”.

This inappropriate characterization unfortunately came into common usage and led pejoratively to the syndrome being called “mongolism” for quite some time, before the term was repudiated by amongst others Reginald Down, John Langdon Down’s son. However the significance of Down’s work was that perhaps for the first time, significant human “difference” and dysfunction were able to be ascribed directly to evolutionary and developmental anomalies, and not to cultural or religious myths, beliefs or legends. It was perhaps also the first time a developmental “phenotype” was described.

The nineteenth century also witnessed increasing interest in the notion of “generalized intelligence” and its measurement. Francis Galton was a scholar and researcher who obtained permission to establish an “anthropometric laboratory” at an international health exhibition. It was originally intended to refer to the management of physical characteristics, but was equally interested in the measurement of psychological performance. This intersected with the work of American student, James Cattell, and together they began to investigate variations in performance across different people.

Cattell subsequently established a psychological laboratory at the University of Pennsylvania, to research “mental tests and measurements”, but the American Psychological Association could not reach consensus about the best focus of standardized tests. British psychologist, Charles Spearman, claimed in 1904 that performance on specific tests depended upon both “general intelligence” and other specific traits or factors. Meanwhile, Alfred Binet and Victor Henri proposed an “individual psychology” where differences in “higher” mental functions such as memory and comprehension could be measured similarly to traits such as sensory processes. In 1905 Binet and Simon introduced a “metric scale of intelligence” which differentiated between “idiocy”, “imbecility”, and “feeblemindedness”.

Binet’s 1905 scale was able measure intelligence in children from 3 to 15 years. It is interesting to review selected test items from this scale for the age range 3 to 6 years, and to compare these with the tasks now inherent in modern assessments of developmental skills in young children (Figure 1.2):

Figure 1.2 Sample of Binet and Simon's 1909 Test Items.

Although ostensibly theorizing about human intelligence, Binet’s work also illustrated the nexus between typically developing skills in childhood and “normal” development as a function of age. It is also worth noting however that much of the early research and development of standardized assessment tools related not to children or their care and education, but to the more unsavoury task of “screening” immigrants arriving in New York Harbour at Ellis Island. Any tourist visiting this facility cannot help but be moved by the images and stories of families being separated through “assessment” techniques based upon an individual immigration official’s opinion of one’s physical and mental aptitudes and status.

There was an economic imperative for accurate “assessment and screening”, with individual states not wanting to be encumbered with “inappropriate labour”. This was impressed upon the American federal government, and once the seed of formalized assessment was sown, it blossomed, and added to the foundations laid by Binet, Cattell, Spearman, Galton, and others.

The early decades of the twentieth century witnessed a veritable explosion in knowledge about child development, assessment, and categorization. By 1925 Gesell had compiled an item database of approximately 150 skills for his developmental schedule, encompassing motor skills, language skills, adaptive behaviour skills, and personal-social skills. In 1931 came the Merrill-Palmer Scale of Mental Tests, in...