Tracing the temporal stability of autism spectrum diagnosis and severity as measured by the Autism Diagnostic Observation Schedule: A systematic review and meta-analysis

Abstract

BackgroundExploring ways to improve the trajectory and symptoms of autism spectrum disorder is prevalent in research, but less is known about the natural prognosis of autism spectrum disorder and course of symptoms. The objective of this study was to examine the temporal stability of autism spectrum disorder and autism diagnosis, and the longitudinal trajectories of autism core symptom severity. We furthermore sought to identify possible predictors for change.MethodsWe searched PubMed, PsycInfo, EMBASE, Web of Science, Cochrane Library up to October 2015 for prospective cohort studies addressing the autism spectrum disorder/autism diagnostic stability, and prospective studies of intervention effects. We included people of all ages with autism spectrum disorder/autism or at risk of having autism spectrum disorder, who were diagnosed and followed up for at least 12 months using the Autism Diagnostic Observation Schedule (ADOS). Both continuous ADOS scores and dichotomous diagnostic categories were pooled in random-effects meta-analysis and meta-regression.ResultsOf 1443 abstracts screened, 44 were eligible of which 40 studies contained appropriate data for meta-analysis. A total of 5771 participants from 7 months of age to 16.5 years were included. Our analyses showed no change in ADOS scores across time as measured by Calibrated Severity Scores (mean difference [MD] = 0.05, 95% CI -0.26 to 0.36). We observed a minor but statistically significant change in ADOS total raw scores (MD = -1.51, 95% CI -2.70 to -0.32). There was no improvement in restricted and repetitive behaviours (standardised MD [SMD] = -0.04, 95% CI -0.19 to 0.11), but a minor improvement in social affect over time (SMD = -0.31, 95% CI -0.50 to -0.12). No changes were observed for meeting the autism spectrum disorder criteria over time (risk difference [RD] = -0.01, 95% CI -0.03 to 0.01), but a significant change for meeting autism criteria over time (RD = -0.18, 95% CI -0.29 to -0.07). On average, there was a high heterogeneity between studies (I2 range: 65.3% to 93.1%).DiscussionWhile 18% of participants shifted from autism to autism spectrum disorder diagnosis, the overall autism spectrum disorder prevalence was unchanged.Overall autism core symptoms were remarkably stable over time across childhood indicating that intervention studies should focus on other areas, such as quality of life and adaptive functioning. However, due to high heterogeneity between studies and a number of limitations in the studies, the results need to be interpreted with caution.

Sleep–behaviour relationship in children with autism spectrum disorder: methodological pitfalls and insights from cognition and sensory processing

“…Moreover, autistic traits were assessed twice with different scales (first with the Pervasive Development Problem scale of the Child Behaviour Checklist and then with the Social Responsiveness Scale) completed by the caregivers, rendering the comparisons between the two time points difficult. The ideal situation would be to use an instrument designed to measure the temporal stability of autistic traits, independent of age, intelligence level, and language abilities, by an external, more objective experimenter . The Autism Diagnostic Observation Schedule, particularly its comparison score, meet all of these criteria by proposing different modules adapted to the language level and age of the child.…”

“…The ideal situation would be to use an instrument designed to measure the temporal stability of autistic traits, independent of age, intelligence level, and language abilities, by an external, more objective experimenter. 70 The Autism Diagnostic Observation Schedule, 71 particularly its comparison score, meet all of these criteria by proposing different modules adapted to the language level and age of the child. However, it is not sufficiently sensitive to capture small changes in behaviour.…”

Predictors of reliable symptom change: Secondary analysis of the Preschool Autism Communication Trial

“…Gold-standard measures to quantify autism symptom presentation (Lord et al, 2000;Lord, Rutter, & Le Couteur, 1994) were developed to inform diagnostic decision-making, rather than to measure sensitively change over time or in response to treatment. Nevertheless, as recently synthesised by Bieleninik et al (2017), several prospective cohort studies as well as a small number of randomised controlled trials (e.g. Dawson et al, 2010;Green et al, 2010;Solomon, Van Egeren, Mahoney, Quon Huber, & Zimmerman, 2014) have adopted gold-standard diagnostic measures as ambitious targets by which to evaluate intervention outcome.…”

Proceso de adaptación de padres y madres de hijos diagnosticados dentro del Trastorno del Espectro Autista

“…Asimismo, es importante desarrollar programas de atención en salud física y mental que permitan un cuidado apropiado de las personas con TEA a lo largo del desarrollo, incluyendo la vida adulta. Esto se sustenta en que la sintomatología de este trastorno tiende a ser estable a lo largo del tiempo (Bieleninik et al, 2017). Por ello, se sugiere que las intervenciones se centren en mejorar la calidad de vida de las personas con este diagnóstico, en lugar de focalizarse únicamente en la eliminación de síntomas y características propias del mismo.…”

“…De esta manera, se puede potenciar las habilidades que presenta la persona con TEA (Bieleninik et al, 2017). Este soporte profesional debe también promover la aceptación y vínculo sano entre estos padres y sus hijos.…”