Pilot protocol for the Parent and Infant Inter(X)action Intervention (PIXI) feasibility study.

This paper provides the detailed protocol for a pilot study testing the feasibility, acceptability, and initial efficacy of a targeted two-phase, remotely delivered early intervention program for infants with neurogenetic conditions (NGC) and their caregivers. The Parent and Infant Inter(X)action Intervention (PIXI) is designed to support parents and infants with a NGC diagnosed in the first year of life. PIXI is implemented in two phases, with the first phase focusing on psychoeducation, parent support, and how to establish routines for supporting infant development.

Toddlers at Elevated Likelihood for Autism: Exploring Sensory and Language Treatment Predictors.

Baseline child characteristics may predict treatment outcomes in children with or at elevated likelihood of developing autism (EL-ASD). Little is known about the role of child sensory and language features on treatment outcome. Participants were randomly assigned to a parent-mediated intervention or control condition.

Early measurement of autism risk constructs in the general population: A new factor structure of the First Years Inventory (FYIv3.1) for ages 6-16 months.

Early detection of autism risk in the community is critical to increasing families' access to early intervention, yet few measures have been developed and tested for the general population of infants <16 months to tap a broader range of autism risk constructs. This study aimed to (a) examine the factor structure of the First Years Inventory, version 3.1 (FYIv3.

Parent responsiveness mediates the association between hyporeactivity at age 1 year and communication at age 2 years in children at elevated likelihood of ASD.

Studies suggest that higher parent responsiveness is associated with higher child language abilities. Infants and toddlers later diagnosed with autism spectrum disorder (ASD) often display hyporeactivity to sensory stimuli, which has also been associated with lower child communication abilities and lower parent responsiveness. Yet, whether parent responsiveness mediates the relationship between child hyporeactivity and later communication outcomes remains unexplored.

Measuring Transactional Engagement Among Young Children with Elevated Likelihood for Later Autism Spectrum Disorder Diagnosis.

This analytical study documented the presence of transactions in parent-child engagement within a sample of young children at an elevated likelihood for an eventual diagnosis of autism spectrum disorder (ASD). Specifically, the study examined the establishment of transactional engagement through reciprocal behaviors between parents and their young children at-risk for ASD. In the study sample, established transactional engagement occurred at a higher rate than other levels of engagement.

Preferences for Accessing Electronic Health Records for Research Purposes: Views of Parents Who Have a Child With a Known or Suspected Genetic Condition.

Objectives: The purpose of this study was to examine parental preferences for researchers accessing their child's electronic health record across 3 groups: those with a child with (1) a known genetic condition (fragile X syndrome FXS), (2) a suspected genetic condition (autism spectrum disorder [ASD]), and (3) no known genetic condition (typically developing).

Methods: After extensive formative work, a discrete choice experiment was designed consisting of 5 attributes, each with 2 or 3 levels, including (1) type of researcher, (2) the use of personally identifiable information, (3) the use of sensitive information, (4) personal importance of research, and (5) return of results. Stratified mixed logit and latent class conditional logit models were examined.

Joint Attention and Sensory-Regulatory Features at 13 and 22 Months as Predictors of Preschool Language and Social-Communication Outcomes.

Purpose The purpose of this study was to understand how joint attention and sensory-regulatory features are related in early childhood and predict language and social-communication outcomes in preschool in order to build mechanistic theories that can inform early intervention directed at improving these outcomes. Method Cross-lagged panel analysis models were used to examine the association between joint attention and sensory-regulatory features at 13 and 22 months of age in children ( = 87) who were identified via community screening at 12 months as having a higher likelihood than the general population for being diagnosed with autism spectrum disorder. Results Significant concurrent correlations and predictive correlations were found between these constructs at 13 and 22 months.

Dynamic Eye Tracking as a Predictor and Outcome Measure of Social Skills Intervention in Adolescents and Adults with Autism Spectrum Disorder.

To evaluate an eye tracking task as a predictor and outcome measure of treatment response for autism spectrum disorder (ASD) social skills interventions, adolescents and young adults with ASD completed the eye tracking task before, immediately after, and two months after completing Social Cognition and Interaction Training for Autism (SCIT-A). The study compared SCIT-A participants (n = 20) to participants with ASD who received treatment as usual (TAU; n = 21). Overall, increased visual attention to faces and background objects and decreased attention to hands playing with toys at baseline were associated with improved social functioning immediately following intervention, suggesting this eye tracking task may reliably predict ASD social intervention outcomes.

Ethical, Legal, and Social Issues Related to the Inclusion of Individuals With Intellectual Disabilities in Electronic Health Record Research: Scoping Review.

Background: Data from electronic health records (EHRs) are increasingly used in the field of genetic research to further precision medicine initiatives. However, many of these efforts exclude individuals with intellectual disabilities, which often stem from genetic conditions. To include this important subpopulation in EHR research, important ethical, legal, and social issues should be considered.

Preferences for the research use of electronic health records among young adults with fragile X syndrome or autism spectrum disorder.

Background: Health researchers are increasingly using electronic health records (EHRs) to study the health care needs of people with neurodevelopmental disorders (NDDs). However, little is known about the preferences of people with NDDs for sharing EHRs for research.

Objective: To explore preferences for sharing EHRs for research among young adults ages 18-40 who make their own legal decisions and who have autism spectrum disorder (ASD), fragile X syndrome (FXS), or no NDDs.

Sensory Reactivity at 1 and 2 Years Old is Associated with ASD Severity During the Preschool Years.

Children with Autism Spectrum Disorder (ASD) often display atypical sensory reactivity within the first years of life, prior to a diagnosis. This study examined sensory reactivity patterns at 14 months, changes from 14 to 23 months, and later ASD severity at 3 to 5 years of age in children (n = 87) at elevated likelihood of ASD. Results indicated that observed hyporeactivity at 14 months and increases from 14 to 23 months were related to higher ASD severity during the preschool years.

"Just tell me what's going on": The views of parents of children with genetic conditions regarding the research use of their child's electronic health record.

Objective: The purpose of this study was to understand the ethical, legal, and social issues described by parents of children with known or suspected genetic conditions that cause intellectual and developmental disabilities regarding research use of their child's electronic health record (EHR).

Materials And Methods: We conducted 4 focus groups with parents of children with a known (n = 12) or suspected (n = 11) genetic condition, as well as 2 comparison groups with parents who had a child with no known genetic condition (n = 15). Focus group transcripts were coded and analyzed using directed content analysis.

"If He Has it, We Know What to Do": Parent Perspectives on Familial Risk for Autism Spectrum Disorder.

Objective: Predictive testing for familial disorders can guide healthcare and reproductive decisions. Familial disorders with onset in childhood (e.g.

The Performance of the First Year Inventory (FYI) Screening on a Sample of High-Risk 12-Month-Olds Diagnosed with Autism Spectrum Disorder (ASD) at 36 Months.

This study examined the performance of the First Year Inventory (FYI; version 2.0), a community-normed parent-reported screening instrument, in a high-risk (HR) sample of 12-month-olds with older siblings diagnosed with autism spectrum disorder (ASD). The FYI 2.

Cascading effects of attention disengagement and sensory seeking on social symptoms in a community sample of infants at-risk for a future diagnosis of autism spectrum disorder.

Recent work suggests sensory seeking predicts later social symptomatology through reduced social orienting in infants who are at high-risk for autism spectrum disorder (ASD) based on their status as younger siblings of children diagnosed with ASD. We drew on extant longitudinal data from a community sample of at-risk infants who were identified at 12 months using the First Year Inventory, and followed to 3-5 years. We replicate findings of Damiano et al.

Parent-Mediated Intervention for One-Year-Olds Screened as At-Risk for Autism Spectrum Disorder: A Randomized Controlled Trial.

Theoretically, interventions initiated with at-risk infants prior to the point in time a definitive autism spectrum disorder (ASD) diagnosis can be made will improve outcomes. Pursuing this idea, we tested the efficacy of a parent-mediated early intervention called Adapted Responsive Teaching (ART) via a randomized controlled trial with 87 one-year-olds identified by community screening with the First Year Inventory as at-risk of later ASD diagnoses. We found minimal evidence for main effects of ART on child outcomes.

Social Orienting and Attention Is Influenced by the Presence of Competing Nonsocial Information in Adolescents with Autism.

Our experiences with the world play a critical role in neural and behavioral development. Children with autism spectrum disorder (ASD) spend a disproportionate amount of time seeking out, attending to, and engaging with aspects of their environment that are largely nonsocial in nature. In this study we adapted an established method for eliciting and quantifying aspects of visual choice behavior related to preference to test the hypothesis that preference for nonsocial sources of stimulation diminishes orientation and attention to social sources of stimulation in children with ASD.

Predictors of Parent Responsiveness to 1-Year-Olds At-Risk for Autism Spectrum Disorder.

Parent responsiveness is critical for child development of cognition, social-communication, and self-regulation. Parents tend to respond more frequently when children at-risk for autism spectrum disorder (ASD) demonstrate stronger social-communication; however, it is unclear how responsiveness is associated with sensory characteristics of children at-risk for ASD. To address this issue, we examined the extent to which child social-communication and sensory reactivity patterns (i.

Late Positive Potential ERP Responses to Social and Nonsocial Stimuli in Youth with Autism Spectrum Disorder.

We examined the late positive potential (LPP) event related potential in response to social and nonsocial stimuli from youths 9 to 19 years old with (n = 35) and without (n = 34) ASD. Social stimuli were faces with positive expressions and nonsocial stimuli were related to common restricted interests in ASD (e.g.

Preliminary Efficacy of Family Implemented TEACCH for Toddlers: Effects on Parents and Their Toddlers with Autism Spectrum Disorder.

This study examined the effects of an intervention to support parents and promote skill development in newly diagnosed toddlers with ASD. Participants included 50 children with ASD under 3 and their parents who were randomly assigned to participate in a 6-month intervention, Family Implemented TEACCH for Toddlers (FITT) or 6 months of community services as usual. FITT included 90-min in-home sessions (n = 20) and parent group sessions (n = 4).

Brief Report: Cognitive Control of Social and Nonsocial Visual Attention in Autism.

Prosaccade and antisaccade errors in the context of social and nonsocial stimuli were investigated in youth with autism spectrum disorder (ASD; n = 19) a matched control sample (n = 19), and a small sample of youth with obsessive compulsive disorder (n = 9). Groups did not differ in error rates in the prosaccade condition for any stimulus category. In the antisaccade condition, the ASD group demonstrated more errors than the control group for nonsocial stimuli related to circumscribed interests, but not for other nonsocial stimuli or for social stimuli.

Increased reward value of non-social stimuli in children and adolescents with autism.

An econometric choice task was used to estimate the implicit reward value of social and non-social stimuli related to restricted interests in children and adolescents with (n = 12) and without (n = 22) autism spectrum disorder (ASD). Mixed effects logistic regression analyses revealed that groups differed in valuation of images related to restricted interests: control children were indifferent to cash payouts to view these images, but children with ASD were willing to receive less cash payout to view these images. Groups did not differ in valuation of social images or non-social images not related to restricted interests.

Neural mechanisms of negative reinforcement in children and adolescents with autism spectrum disorders.

Background: Previous research has found accumulating evidence for atypical reward processing in autism spectrum disorders (ASD), particularly in the context of social rewards. Yet, this line of research has focused largely on positive social reinforcement, while little is known about the processing of negative reinforcement in individuals with ASD.

Methods: The present study examined neural responses to social negative reinforcement (a face displaying negative affect) and non-social negative reinforcement (monetary loss) in children with ASD relative to typically developing children, using functional magnetic resonance imaging (fMRI).

Preliminary efficacy of adapted responsive teaching for infants at risk of autism spectrum disorder in a community sample.

This study examined the (a) feasibility of enrolling 12-month-olds at risk of ASD from a community sample into a randomized controlled trial, (b) subsequent utilization of community services, and (c) potential of a novel parent-mediated intervention to improve outcomes. The First Year Inventory was used to screen and recruit 12-month-old infants at risk of ASD to compare the effects of 6-9 months of Adapted Responsive Teaching (ART) versus referral to early intervention and monitoring (REIM). Eighteen families were followed for ~20 months.

Parent reflections of experiences of participating in a randomized controlled trial of a behavioral intervention for infants at risk of autism spectrum disorders.

Background: Despite the mounting evidence of efficacy of early intervention for children with autism spectrum disorders, there is little research that considers the various perceptions and resources with which parents respond to the pressures and opportunities associated with participation in early intervention. Research is particularly lacking surrounding experiences of parents with infants who are at risk of autism spectrum disorders but do not (yet) have a diagnosed condition.

Objectives: This qualitative study aimed to explore the experiences of caregivers following their participation in a randomized controlled trial of Adapted Responsive Teaching, a parent-infant relationship-focused intervention for infants at risk of autism spectrum disorders in a community sample.