The adult outcome of children referred for autism: typology and prediction from childhood.

Andrew Pickles,James B Mccauley,Lauren A Pepa,Catherine Lord,Marisela Huerta

doi:10.1111/jcpp.13180

Abstract

BackgroundAutism Spectrum Disorder is highly heterogeneous, no more so than in the complex world of adult life. Being able to summarize that complexity and have some notion of the confidence with which we could predict outcome from childhood would be helpful for clinical practice and planning.MethodsLatent class profile analysis is applied to data from 123 participants from the Early Diagnosis Study (Lord et al., Archives of General Psychiatry, 2006, 63, 694) to summarize in a typology the multifacetted early adult outcome of children referred for autism around age 2. The form of the classes and their predictability from childhood is described.ResultsDefined over 15 measures, the adult outcomes were reduced to four latent classes, accounting for much of the variation in cognitive and functional measures but little in the affective measures. The classes could be well and progressively more accurately predicted from childhood IQ and symptom severity measurement taken at age 2 years to age 9 years. Removing verbal and nonverbal IQ and autism symptom severity measurement from the profile of adult measures did not change the number of the latent classes; however, there was some change in the class composition and they were more difficult to predict.ConclusionsWhile an empirical summary of adult outcome is possible, careful consideration needs to be given to the aspects that should be given priority. An outcome typology that gives weight to cognitive outcomes is well predicted from corresponding measures taken in childhood, even after account for prediction bias from fitting a complex model to a small sample. However, subjective well‐being and affective aspects of adult outcome were weakly related to functional outcomes and poorly predicted from childhood.

Highlights

A rare consensus in the field of autism spectrum disorder (ASD) is the heterogeneity (Billstedt et al, 2005; Bishop-Fitzpatrick et al, 2016; Howlin, Mawhood, & Rutter, 2000; Magiati, Tay, & Howlin, 2014; Seltzer, Shattuck, Abbeduto, & Greenberg, 2004)
We examine whether measures, fairly typical of those made in current clinical assessments and taken when the children first entered the cohort, are predictive of their adult outcome group, and the precision of prediction that can be achieved
The participants used to characterize the adult outcome classes were drawn from three sources: (a) 192 children under age 3 years who were referred for possible autism to two tertiary autism programs (North Carolina and Chicago), (b) 21 children of the same age and sources recruited as a comparison group that had never been referred to the autism programs and who, though exhibiting developmental delay, were not thought to have ASD at that time and (c) 31 new recruits from Michigan who joined the study at approximately age 9 and recruited from sources similar to those used at project inception

Summary

Introduction

A rare consensus in the field of autism spectrum disorder (ASD) is the heterogeneity (Billstedt et al, 2005; Bishop-Fitzpatrick et al, 2016; Howlin, Mawhood, & Rutter, 2000; Magiati, Tay, & Howlin, 2014; Seltzer, Shattuck, Abbeduto, & Greenberg, 2004) Previous diagnostic divisions such as Asperger’s syndrome and PDD-NOS have given way to a spectrum of ASD. This implies that there may be considerable variation in severity in terms of symptomatic behaviours that may be measured by such scores as the Comparative Severity Score on the Autism Diagnostic Observation Schedule (ADOS; Gotham, Pickles, & Lord, 2009).

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