The Road to Diagnosis and Post-School Life

The Road to Diagnosis and Post-School Life

Barbara Rissman (Queensland University of Technology, Australia)
DOI: 10.4018/978-1-4666-9539-9.ch011


This chapter is written in two sections, each with its own introduction and background. “The Road to Diagnosis” is not intended to be exhaustive. Discussion touches on the role of the psychologist and neuropsychologist in the NLD diagnostic process in light of considered views of experts offered in earlier chapters. The critical need to assess executive functions (EFs) as a core component of an NLD is raised as well as the need to include NLD in a formal classification system. Formal inclusion of NLD in an organized structure not only has potential to transform lives on an international scale, but it would acknowledge accumulated scientific research findings, and persistent advocacy of investigators. The “Post-School Life” section discusses realistic issues that may be experienced by those who live with, teach, care for, guide, and advocate for an individual with shunted hydrocephalus, spina bifida, and NLD. This section reports, as impartially as possible, some of the author's lived experience.
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A clear differential diagnosis is critical to gaining funded support for individuals in school and post-school environments. Many psychologists are unfamiliar with NLD. They need to recognize this disability for what it is—not as a behavioral disorder, as it was previously conceptualized by psychologists. This section discusses the role of the neuropsychologist in diagnosing NLD, the need to assess executive functions and adaptive behaviors, and the diagnosis of NLD in one Australian study. The potential roles of the International Classification of Functioning (ICF) and the umbrella organization, the International Classification of Disease (ICD), in having NLD recognized in a formal classification system are discussed in view of increasing global interest.

Although NLD is not formally identified in any current classification system, the findings from several hundred peer-reviewed journal articles, the publication of dozens of books and book chapters, and the creation of a half-dozen or so websites dedicated to this disorder have revealed the clinical features that characterize this disorder and provide compelling evidence supporting its validity. (Casey, 2012, p. 37)



All learning involves verbal and nonverbal processes. In an educational setting, psychological testing that is limited to intelligence and academic functioning typically excludes principle NLD characteristics. This model of assessment has been found to be an inadequate method to render an accurate NLD diagnosis. Multidimensional neuropsychological testing, which provides insight into brain-behavior relationships, is essential. Psychometric testing of individuals with suspected NLD should include assessment of visual, spatial, and tactile perceptions; fine- and gross-motor skills; and manual dexterity; as well as assessment of cognition, adaptive behaviors, and executive functions (EFs). An important objective of this chapter is to highlight the need to assess the verbal and nonverbal abilities needed to function effectively in home, school, and post-school environments. This is particularly important for those already living with comorbid conditions such as hydrocephalus and spina bifida. Comprehensive neuropsychological and occupational assessments play an influential role in providing reliable career guidance and vocational placements and in designing appropriate support packages so individuals can develop functional competencies relative to their needs.

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