BackgroundSince the 1940s, the concept of autism has undergone marked changes, and autism spectrum disorder (ASD) is a wildly heterogenous condition. At the same time, the prevalence of ASD has increased massively.MethodsThis essay considers possible reasons for the changes and their consequences.ResultsAmong drivers for the increase in prevalence are cultural changes, such as the desire for inclusion, harm avoidance, reliance on self-report, and the acceptance of masking. These have all led to a lowering of the diagnostic threshold. Furthermore, the popularity of the concept of autism boosted numbers via self-diagnosis and a search for identity.ConclusionsMarked differences now exist between those first diagnosed in childhood and others first diagnosed in adolescence or adulthood. The time has come to examine reasons for these conceptual changes and the consequences for clinical practice and research.
From the article:
By continually loosening the diagnostic criteria to accommodate a vast range of social difficulties, anxieties, or sensory sensitivities, the clinical meaning of ASD has been diluted. Yet I believe that the characteristic social and nonsocial features of core autism will still be detectable in a strictly pruned spectrum.
The shift from a precise clinical into a vague, culturally amplified identity category has generated a massive demand for assessments in adolescents and adults, with an almost magnetic attraction to the ASD label. The challenge for the future is to use greater precision in the diagnostic process by giving more weight to careful objective observation, and by scrupulously probing contraindications.
We need a fresh attempt to define the specific causes of the distress and disability experienced by many of the late-diagnosed cases so we can custom-make the support they need. For example, specific therapies could address sensory issues and could prevent burnout. There are ways to reduce the symptoms of anxiety disorder and depression. There are also ways to build resilience in the face of significant social stress. None of these approaches are likely to be appropriate for early-diagnosed cases, where different types of support are needed.
Splitting up the spectrum would ultimately prevent misdiagnosis. New labels may appear, and different specialists are likely to be needed, at least for the two large subgroups that are now emerging. Such a reorientation would signpost a new route toward the correct support for many of the individuals who are on the expanding waiting list. At the same time, it would counteract the tragic neglect of those with the most severe impairments.
