Abstract
IntroductionAutism spectrum disorder is a highly heterogeneous diagnosis. When a child is referred to autism services or receives a diagnosis of autism spectrum disorder it is not known what their potential adult outcomes could be. We consider the challenge of making predictions of an individual child’s long-term multi-facetted adult outcome, focussing on which aspects are predictable and which are not.MethodsWe used data from 123 adults participating in the Autism Early Diagnosis Cohort. Participants were recruited from age 2 and followed up repeatedly through childhood and adolescence to adulthood. We predicted 14 adult outcome measures including cognitive, behavioral and well-being measures. Continuous outcomes were modeled using lasso regression and ordinal outcomes were modeled using proportional odds regression. Optimism corrected predictive performance was calculated using cross-validation or bootstrap. We also illustrated the prediction of an overall composite formed by weighting outcome measures by priorities elicited from parents.ResultsWe found good predictive performance from age 9 for verbal and non-verbal IQ, and daily living skills. Predictions for symptom severity, hyperactivity and irritability improved with inclusion of behavioral data collected in adolescence but remained modest. For other outcomes covering well-being, depression, and positive and negative affect we found no ability to predict adult outcomes at any age. Predictions of composites based on parental priorities differed in magnitude and precision depending on which parts of the adult outcome were given more weight.ConclusionVerbal and non-verbal IQ, and daily living skills can be predicted well from assessments made in childhood. For other adult outcomes, it is challenging to make meaningful predictions from assessments made in childhood and adolescence using the measures employed in this study. Future work should replicate and validate the present findings in different samples, investigate whether the availability of different measures in childhood and adolescence can improve predictions, and consider systematic differences in priorities.
Highlights
Autism spectrum disorder is a highly heterogeneous diagnosis
Autism spectrum disorder (ASD) is a neurodevelopmental disorder, commonly diagnosed in early childhood and generally thought to have a lifelong impact. Highly heterogeneous, both among those assessed at any one time and in how individuals develop over time (Howlin et al, 2000; Seltzer et al, 2004; Billstedt et al, 2011; BishopFitzpatrick et al, 2016; Simonoff et al, 2019; Stringer et al, 2020). It would be clinically helpful for both parents of autistic children and the clinicians they work with to have a clear understanding of what potential adult outcomes could be; both what might be expected with some confidence and where it would be premature to begin to form any expectation
This study extends previous work by using a quite different strategy and methods, exploring the impact of extending the span of measures available for prediction into more behavioral and emotional problem domains, and considering prediction from a little closer to the adult outcome by including measures taken beyond childhood and into adolescence
Summary
Autism spectrum disorder is a highly heterogeneous diagnosis. When a child is referred to autism services or receives a diagnosis of autism spectrum disorder it is not known what their potential adult outcomes could be. It would be clinically helpful for both parents of autistic children and the clinicians they work with to have a clear understanding of what potential adult outcomes could be; both what might be expected with some confidence and where it would be premature to begin to form any expectation. This can be important for individual planning, both in terms of where intervention or support may be required and to anticipate the potential financial impact of autism, which may be considerable (Buescher et al, 2014). Limited information is available to guide clinicians and families to determine how the development and phenotypic expression of their child may deviate from other autistic children
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