When the Score Is Not the Story Context-Aware Assessment of Cognitive Change in Neurodivergent Adults with Dysautonomia and Complex Chronic Illness
Abstract
Contemporary dementia and neuropsychological guidance does not support diagnosing dementia from a low cognitive score alone. Assessment requires evidence of acquired cognitive decline, appraisal of everyday function, history and collateral information, investigation of potentially reversible contributors, and—in specialist assessment—estimation of premorbid ability. This article is a lived-experience-informed perspective, not original empirical research or a systematic review. It does not propose biography or context as replacements for accepted practice. Instead, it addresses a narrower implementation question: how can those principles be made explicit and auditable when lifelong neurodevelopmental difference makes premorbid estimation uncertain and complex chronic illness causes cognitive performance to fluctuate with bodily state? The discussion is grounded in my experience as an older adult with formally diagnosed autism spectrum disorder (Level 1), severe lifelong dyslexia, documented orthostatic hypotension with supine hypertension, gastrointestinal dysautonomia, fatigue, and later-life concern about cognitive change. Throughout, I distinguish documented diagnoses and measurements from phenomenological description and from hypotheses, including presumed episodic cerebral hypoperfusion and a personal “three-hit” account of secondary autonomic dysfunction. I also distinguish subjective cognitive decline, mild cognitive impairment, dementia, and biomarker-defined Alzheimer pathology; these states are related but not interchangeable.
The principal risk, I argue, lies in four connected problems: incomplete implementation of accepted guidance; disproportionate reliance on brief screening scores before specialist assessment; limited access to neuropsychology; and a validation gap concerning older neurodivergent adults with medically fluctuating conditions. Four operational adaptations are proposed: triangulated rather than reading-test-only premorbid estimation; functional assessment against prior opportunity, ordinary support, current support, effort, errors, and withdrawal; explicit labelling of documented fact, self-report, inference, and hypothesis; and recording of assessment state, with relevant autonomic variables only in selected patients. Longitudinal comparison should use reliable-change methods under reasonably comparable conditions. These adaptations are an implementation checklist and research agenda, not a validated diagnostic instrument. Biomarkers may establish underlying pathology, but do not by themselves establish that the pathology explains the person’s current cognitive or functional presentation. The score remains indispensable; it becomes safer when interpreted within development, function, physiology, culture, and time.