Most children with autism 'do well' by middle childhood in key developmental domains
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A significant number of children with autism spectrum disorder did well by middle childhood in one or more key domains of developmental health, according to results of a longitudinal cohort study published in JAMA Network Open.
“The definition of a good outcome is somewhat more ambiguous now than previously thought,” Peter Szatmari, MD, of the Hospital for Sick Children in Canada, and colleagues wrote. “The neurodiversity movement and involvement of those with lived experience in advocacy and research have provided much-needed perspectives. Given that ASD is multidimensional and heterogeneous, the developmental domains that should be considered as outcomes and the measurement tools that should be used to assess those domains is an evolving issue.”
The investigators conducted the current study among 272 children with ASD (mean age, 10.76 years; 86% boys), to estimate via growth and proficiency metrics their prevalence of “doing well,” a phrase they used instead of good outcome because it signified a concept loaded with less value. Further, they sought to assess whether variables on the child and family levels significantly affected likelihood of doing well.
The researchers enrolled children from Canadian regional clinics and sampled them three times between ages 2 and 4.9 years (timepoint one), as well as two times during middle childhood (timepoint two). Exposures included first-sample language and IQ evaluations, as well as household income, parent coping and family functioning. Measures of socialization, communication and independent living skills, as well as measures of internalizing and externalizing behaviors, served as key outcome domains.
Szatmari and colleagues used logistic regression to determine the potential role of the exposures in shaping assessed outcomes. They also assessed the link between outcomes and concurrent Autism Diagnostic Observation Schedule (ADOS) classification scores.
Results showed 78.8% (95% CI, 73.2-84.4) of participants appeared to be doing well according to either metric on one or more domain, and 23.6% (95% CI, 17.7-29.4) in four or five domains. According to the researchers, participants were able to do well according to either proficiency or growth measures and still meet ADOS ASD criteria. They reported ADOS scores of four or greater for between 61.5% (95% CI, 40.7-79.1) and 79.6% (95% CI, 66-88.9) of participants according to the growth metric and between 63.8% (95% CI, 48.4-76.9) and 75.8% (95% CI, 63-85.5) according to the proficiency metric. Those who did well on growth or proficiency metrics for all domains exhibited higher timepoint one scores on that outcome domain; for example, daily living skills at timepoint one were linked to doing well at timepoint two daily living according to the proficiency metric measured via the Vineland Adaptive Behavior Scales-Second Edition daily living skills scale. Participants who did well in socialization according to the growth metric had higher timepoint one language skills scores. Those who did well in externalizing according to the growth metric had higher household income at timepoint one. Moreover, better family functioning at timepoint one was linked to doing well on proficiency-measured socialization and externalizing and on growth-measured internalizing.
“Children with ASD do well when, collectively, we create the social conditions for all people to participate and to experience their capabilities,” Szatmari and colleagues wrote. “Implementing this will require the active collaboration of all levels of government and policymakers, as well as clinicians, researchers, family members and people with ASD. We hope that the results of this study will encourage the ASD community writ large to also take a strengths-based approach to treatment planning as a way of supporting all children and families with ASD in doing well in every respect.”
In a related editorial, Matthew J. Hollocks, PhD, DClinPsy, and Emily Simonoff, MD, of the department of child and adolescent psychiatry at King’s College London, highlighted the role of the current findings in shaping future research in this area.
“The authors should be commended on their efforts to change the problem-focused narrative around outcomes in people with ASD to one that is both strength-based and lays the foundation for a shift toward a more individualized understanding of how best to support this population,” Hollocks and Simonoff wrote. “Despite these findings, it is important to hold in mind that people with ASD, regardless of their individual strengths, commonly continue to experience high levels of difficulties with everyday living skills and mental health. Further longitudinal research is required that builds upon the work in this study to identify individualized and modifiable characteristics, as well as environmental factors, as targets for the development of treatments and early intervention.”