Are Children Severely Affected by Autism Spectrum Disorder Underrepresented in Treatment Studies? An Analysis of the Literature

Stedman, Amy; Taylor, Briana J.; Erard, Michael; Peura, Christine; Siegel, Matthew

doi:10.1007/s10803-018-3844-y

Cited by 76 publications

(53 citation statements)

References 28 publications

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“…Child factors that were commonly measured were those that were potential moderators and were likely assessed to characterize the sample and/or for inclusion/exclusion criteria and included ASD characteristics, cognition, and adaptive behavior. Consistent with broader intervention reviews [e.g., Stedman, Taylor, Erard, Peura, & Siegel, 2018], we likewise found a mixture of measures used to characterize the sample impacting on the ability to both characterize and compare samples and evaluate moderators/mediators. Across studies, mixed results were found, which may reflect at least in part the use of these same variables (e.g., nonverbal cognition restricted to >12 months, Green et al, 2010) for inclusion/exclusion criteria restricting the variance.…”

Section: Discussionsupporting

confidence: 80%

“…Furthermore, continuing to include measures of hypothesized change mechanisms (e.g., changes in parent behavior) may be of value in determining at what level of generalization an intervention is effective (e.g., if parent behavior did not change it may explain nonsignificant results) and as well as the active ingredients (e.g., parent change in synchrony with child). Taken together, these findings suggest the need for both greater analysis of the impact of moderators typically collected to characterize samples with more systematic selection (as per calls by Stedman et al, 2018 for more consistent characterizations of samples), collection of theoretically driven putative moderators beyond measures to characterize samples, along with the consideration of broader measurement of potential mediators at both the child and family levels.…”

Section: Discussionmentioning

confidence: 98%

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Systematic review of factors that may influence the outcomes and generalizability of parent‐mediated interventions for young children with autism spectrum disorder

et al. 2019

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Parent mediated interventions have the potential to positively influence the interactions and developmental outcomes of children with autism spectrum disorder (ASD). However, a range of factors relating to children, parents and caregivers, and study design may impact on outcomes and thus the generalizability of these interventions to the broader community. The objective of this review was to examine factors that may influence the feasibility, appropriateness, effectiveness, and generalizability of parent mediated interventions for children with ASD. We conducted a systematic review, yielding 41 articles. There was substantial variability in the intervention type, intensity, and study quality. Notably, 46 different inclusion/exclusion criteria were reported across studies including factors relating to children's development, access to other services, comorbidities, parental factors, and access to the intervention. Fifteen articles included examination of 45 different factors potentially associated with, or influencing, intervention outcomes including child (e.g., language skills, ASD severity, cognition) and parent (e.g., adherence and fidelity, education) factors. Although there is clear evidence for an increasingly sophisticated (e.g., systematic phased research for some interventions) and diverse (e.g., studies in geographical diverse contexts including low-resource communities) approach to research examining parent mediated interventions, there remains a need for improved study quality and measurement consistency in research, including a detailed examination of factors that may predict, moderate, and mediate intervention effectiveness for children and their parents.Lay Summary: Parent mediated interventions-in which parents adapt their own behavior or deliver interventions to help their children learn-appear to be effective for some children with autism spectrum disorder. In this review, we identified a range of child, parent, and study design factors that may influence intervention outcomes and ultimately the uptake of these approaches in the community. We suggest that research in this area could be further improved by ensuring that studies include diverse groups of children and parents, and by using study designs that help to establish not only if interventions work, but for whom they work best and why.

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Section: Discussionsupporting

confidence: 80%

Section: Discussionmentioning

confidence: 98%

Systematic review of factors that may influence the outcomes and generalizability of parent‐mediated interventions for young children with autism spectrum disorder

et al. 2019

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“…Our initial focus on aggression in more severely affected youth with ASD addresses critical gaps in the literature. Despite their apparent increased vulnerability to developing serious problem behaviors (Kanne & Mazurek, 2011), those more severely affected by ASD are underrepresented in intervention research [Stedman, Taylor, Erard, Peura, & Siegel, ]. Furthermore, it is common for this subpopulation to require high levels of intensive intervention (e.g., specialized school placements, psychopharmacology, and in‐home behavioral therapies), which often exceed what providers in community settings can offer [Joshi et al, ; Siegel et al, ].…”

Section: Discussionmentioning

confidence: 99%

Predicting aggression to others in youth with autism using a wearable biosensor

et al. 2019

Self Cite

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Unpredictable and potentially dangerous aggressive behavior by youth with Autism Spectrum Disorder (ASD) can isolate them from foundational educational, social, and familial activities, thereby markedly exacerbating morbidity and costs associated with ASD. This study investigates whether preceding physiological and motion data measured by a wrist-worn biosensor can predict aggression to others by youth with ASD. We recorded peripheral physiological (cardiovascular and electrodermal activity) and motion (accelerometry) signals from a biosensor worn by 20 youth with ASD (ages 6-17 years, 75% male, 85% minimally verbal) during 69 independent naturalistic observation sessions with concurrent behavioral coding in a specialized inpatient psychiatry unit. We developed prediction models based on ridge-regularized logistic regression. Our results suggest that aggression to others can be predicted 1 min before it occurs using 3 min of prior biosensor data with an average area under the curve of 0.71 for a global model and 0.84 for person-dependent models. The biosensor was well tolerated, we obtained useable data in all cases, and no users withdrew from the study. Relatively high predictive accuracy was achieved using antecedent physiological and motion data. Larger trials are needed to further establish an ideal ratio of measurement density to predictive accuracy and reliability. These findings lay the groundwork for the future development of precursor behavior analysis and just-in-time adaptive intervention systems to prevent or mitigate the emergence, occurrence, and impact of aggression in ASD.Lay Summary: Unpredictable aggression can create a barrier to accessing community, therapeutic, medical, and educational services. The present study evaluated whether data from a wearable biosensor can be used to predict aggression to others by youth with autism spectrum disorder (ASD). Results demonstrate that aggression to others can be predicted 1 min before it occurs with high accuracy, laying the groundwork for the future development of preemptive behavioral interventions and just-in-time adaptive intervention systems to prevent or mitigate the emergence, occurrence, and impact of aggression to others in ASD.

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“…Children with autism who are non-verbal or minimally verbal are often excluded from research [27], and children with severe communication impairments are less likely to be included in treatment studies [28]. Point OutWords was developed with the inclusion of clients with autism both explicitly by asking children to choose amongst graphical design options and by obtaining therapists' feedback on their behalf, and implicitly by observing children's preferences.…”

Section: Introductionmentioning

confidence: 99%

Point OutWords: protocol for a feasibility randomised controlled trial of a motor skills intervention to promote communicative development in non-verbal children with autism

McKinney

Hotson

Rybicki

et al. 2020

Trials

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Background: Point OutWords is a caregiver-delivered, iPad-assisted intervention for non-verbal or minimally verbal children with autism. It aims to develop prerequisite skills for communication such as manual and oral motor skills, sequencing, and symbolic representation. This feasibility trial aims to determine the viability of evaluating the clinical efficacy of Point OutWords. Methodology: We aim to recruit 46 non-verbal or minimally verbal children with autism and their families, approximately 23 per arm. Children in the intervention group will use Point OutWords for half an hour, five times a week, for 8 weeks. Children in the control group will have equal caregiver-led contact time with the iPad using a selection of control apps (e.g. sensory apps, drawing apps). Communication, motor, and daily living skills are assessed at baseline and post-intervention. Parents will keep diaries during the intervention period and will take part in focus groups when the intervention is completed. Discussion: Point OutWords was developed in collaboration with children with autism and their caregivers, to provide an intervention for a subgroup of autism that has been historically underserved. As autism is a heterogeneous condition, it is unlikely that one style of intervention will address all aspects of its symptomatology; the motor skills approach of Point OutWords can complement other therapies that address core autistic symptoms of social cognition and communication more directly. The current feasibility trial can inform the selection of outcome measures and design for future full-scale randomised controlled trials of Point OutWords and of other early interventions in autism. Trial registration: ISRCTN, ISRCTN12808402. Prospectively registered on 12 March 2019.

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Are Children Severely Affected by Autism Spectrum Disorder Underrepresented in Treatment Studies? An Analysis of the Literature

Cited by 76 publications

References 28 publications

Systematic review of factors that may influence the outcomes and generalizability of parent‐mediated interventions for young children with autism spectrum disorder

Systematic review of factors that may influence the outcomes and generalizability of parent‐mediated interventions for young children with autism spectrum disorder

Predicting aggression to others in youth with autism using a wearable biosensor

Point OutWords: protocol for a feasibility randomised controlled trial of a motor skills intervention to promote communicative development in non-verbal children with autism

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