Assessing Parental Perceptions of Meaningful Outcomes for Children with Autism Spectrum Disorder.

BACKGROUND: Outcomes of children diagnosed with autism spectrum disorder (ASD) generally focus on cognition, language, behavioral, and adaptive functioning, yet it is unknown whether this reflects patient and caregiver priorities. OBJECTIVE: Identify parental perceptions of ASD outcomes and identify whether health care providers are currently addressing these concerns. METHODS: Participant were 60 parents of school-aged children previously diagnosed with ASD participating in a larger autism outcomes study. Parents answered the open-ended question, "What aspect of your child's functioning matters most for your child at this time?" They also ranked a list of outcome categories (thinking and reasoning skills, daily living skills, etc). Parents answered a second open-ended question, "What should healthcare providers be asking about how your child is doing, that they may not be currently asking?" Open-ended independent coding and thematic analysis were used to identify themes for the open-ended questions. RESULTS: The most common themes identified with "what aspect of your child's functioning matters most" were "Social," "Communication," "Emotional," and "Behavior." These were similar to the results of a ranking question in which parents ranked "Communicating with and understanding others," "Social skills," and "Behavior" as most important. "Emotional" was a unique theme, although there is potential overlap between this and the theme of "Behavior." The most common theme identified with the question about what health care providers should be asking was "Social," followed by "Nothing." CONCLUSION: This study demonstrates that parental concerns largely match previous outcome categories, with the exception of a theme identified as "Emotional" which may overlap with "Behavior."

Persistence of Autism Spectrum Disorder From Early Childhood Through School Age.

Importance: While the prevalence of autism spectrum disorder (ASD) continues to increase and early diagnosis is emphasized, there is limited information on outcomes for children diagnosed with ASD in early childhood using contemporary diagnostic criteria. Objectives: To determine the frequency with which children who are clinically diagnosed with ASD at 12 to 36 months of age continue to meet diagnostic criteria for ASD at 5 to 7 years of age and to evaluate whether baseline child-specific and demographic characteristics and receipt of interventions are associated with ASD persistence. Design, Setting, and Participants: In this natural history cohort study, children who received a clinical ASD diagnosis at 12 to 36 months of age underwent a research diagnostic assessment at 5 to 7 years of age. Research assessments occurred from August 14, 2018, to January 8, 2022. Intervention: Children received community-based interventions, and parents provided details about interventions received. Main Outcomes and Measures: The main outcome was persistence of ASD diagnosis based on current functioning. An experienced research psychologist assigned an ASD diagnosis (present or absent) according to criteria from the Diagnostic and Statistical Manual of Mental Disorders (Fifth Edition) after the research assessment. The research assessment included administration of the Autism Diagnostic Observation Schedule-2, Autism Diagnostic Interview-Research, and a cognitive measure. Results: Of the 213 participants diagnosed with ASD at initial clinical assessment (mean [SD] age, 24.6 [3.9] months; 177 boys [83.1%]), 79 (37.1%) did not continue to meet diagnostic criteria for ASD (nonpersistent ASD) at research assessment (mean [SD] age, 74.3 [7.1] months). All children with nonpersistent ASD had IQ of at least 70, while there was a bimodal distribution of IQ for those with persistent ASD (46 with IQ <70 and 88 with IQ ≥70). All children received some interventions, and 201 (94.4%) received ASD-specific intervention, mostly applied behavioral analysis. In a multilevel logistic regression model, the only variables associated with increased odds of being in the nonpersistent ASD group at 6 years of age were higher baseline adaptive skills (b coefficient = -0.287 [SE, 0.108]) and female sex (b = 0.239 [SE, 0.064]). Conclusions and Relevance: The findings of this cohort study suggest that among toddlers diagnosed with ASD, baseline adaptive function and sex may be associated with persistence of ASD.

Development and testing of the eye-pointing classification scale for children with cerebral palsy.

PURPOSE: The aim of this study was to develop and test a new classification scale to describe looking behaviours (gaze fixations and gaze shifts) in relation to eye-pointing. METHODS: The Eye-pointing Classification Scale (EpCS) was developed and tested following established procedures for the construction and evaluation of equivalent scales, and involved 2 phases: Drawing on research literature, Phase 1 involved initial drafting of the scale through a series of multi-disciplinary group discussions; evaluation of the scale through a survey procedure, and subsequent expert group evaluation. Phase 2, was an examination of scale reliability and relationships between child characteristics and level of EpCS classification. RESULTS: In Phase 1, an initial draft of the scale was developed and then evaluated by 52 participants in 10 countries, leading to its refinement. Subsequent expert evaluation of content, style and structure indicated that no further refinement was required. In Phase 2, the scale achieved excellent levels of reliability in clinical testing. A significant relationship was identified between level of child motor ability and EpCS classification, and level of child language understanding and EpCS classification.Implications for rehabilitationNon-speaking children with severe bilateral cerebral palsy who have limited upper limb movement may communicate by using controlled looking behaviours to point to objects and people, referred to as eye-pointing.However, there is little consensus as to which looking behaviours represent eye-pointing and which do not.The Eye-pointing Classification Scale (EpCS) was developed to describe looking behaviours related to eye-pointing in this population of childrenThe EpCS provides a new robust tool for clinical management and research with children with cerebral palsy.