Abbreviating the Early Start Denver Model for community-based family-centered care.

Introduction: Parent-mediated approaches for young children with or with a higher likelihood of autism have gained traction, with mounting evidence of efficacy, but a research-to-gap practice exists, and community effectiveness remains to be firmly established. Methods: Using a community-participatory framework, a total of 10 parent-child dyads received a five-day workshop and six follow-up sessions of ESDM parent coaching. Intervention was implemented across two phases with in-person and telehealth delivery. Results: From pre to post intervention across both phases, parents improved in their fidelity of intervention implementation and children maid gains on proximal measures of social communication. Discussion: Community delivery of an evidence-based parent-mediated interventions for toddlers on the autism spectrum is feasible and promising. Giving resource efficiencies associated with parent-mediated approaches, particularly when delivered through government-funded programs, findings bolster current efforts to promote earlier and more widespread community access to necessary interventions. Facilitators and barriers to supporting parent learning and behavior change via interactive strategies are discussed.

"Setting Them Up for Success": Including Youth on the Autism Spectrum in 4-H.

Youth on the autism spectrum often face challenges accessing services in rural communities compared to those who live in higher resource areas. There is a particular need for services that support skills that will help youth transition to adulthood and future employment. 4-H is a national youth development program that is well-positioned to address the needs of youth on the autism spectrum; however, minimal empirical evidence exists about the implementation and effectiveness of inclusive practices in 4-H programs. The goal of this study was to better understand barriers to enrollment and to identify gaps in support for youth on the autism spectrum participating in 4-H. Twenty Extension Educators in Indiana participated in two focus groups. Thematic analysis of focus group transcripts identified barriers to enrollment including awareness of 4-H as an inclusive program and difficulties navigating 4-H culture. Our analysis identified themes related to new training content and delivery including a resource portfolio, communication, individualized accommodations, and working within the existing leadership training structure. Findings support the benefits of 4-H as a program that can promote life skills and personal development for youth on the autism spectrum but also highlight a significant need for additional training opportunities and resources to increase uptake and improve the implementation of inclusive practices.

Sleep Dysregulation and Daytime Electrodermal Patterns in Children With Autism: A Descriptive Study.

Sleep deficiency influences emotion and behavior regulation but the mechanisms of influence are poorly understood. Emotion, behavioral, and sleep theories highlight differences in autonomic function as a potential pathway of influence and research in typical populations draw links between sleep deficiency and autonomic dysregulation (e.g., elevated reactivity within the sympathetic nervous system). In populations at elevated risk for sleep deficiency/problems (i.e., individuals with autism), greater variability in sleep and autonomic/arousal profiles may be particularly informative. Using electrodermal activity (EDA) as an indicator of sympathetic nervous system activation, this descriptive pilot study aimed to document daytime EDA patterns in children with autism and to explore their relations with sleep dysregulation/deficiency. EDA and sleep were measured using ankle and wrist worn sensors in 13 children (Meanage 6.11 years). EDA indices included nonspecific skin conductance responses (NSSCR) and tonic skin conductance levels (SCL). Descriptively, children in the dysregulated sleep group had fewer NSSCRs and lower SCL in the afternoon. This blunted physiological arousal profile/pattern is consistent with previous research, but this is the first study to explore how sleep may be linked. Notably, this pattern may not reflect sleep but an overall dysregulation profile which in this sample included: dysregulated sleep, a blunted afternoon arousal profile, and elevated ASD symptom severity. Replication with larger, more diverse samples is needed to disentangle the complex relations among sleep, arousal, and ASD behavioral features. However, this study represents an important first step in documenting extended daytime arousal patterns.

Autism Heterogeneity in a Densely Sampled U.S. Population: Results From the First 1,000 Participants in the RI-CART Study.

The objective of this study was to establish a large, densely sampled, U.S. population-based cohort of people with autism spectrum disorder (ASD). The Rhode Island Consortium for Autism Research and Treatment (RI-CART) represents a unique public-private-academic collaboration involving all major points of service for families in Rhode Island affected by ASD. Diagnosis was based on direct behavioral observation via the Autism Diagnostic Observation Schedule, Second Edition. For the first 1,000 participants, ages ranged from 21 months to 64 years. Using Geographic Information System and published prevalence rates, the overall cohort is estimated to represent between 20% and 49% of pediatric age persons in Rhode Island with ASD, with demographics representative of U.S. Census. We observed a high rate of co-occurring medical and psychiatric conditions in affected individuals. Among the most prominent findings of immediate clinical importance, we found that females received a first diagnosis of ASD at a later age than males, potentially due to more advanced language abilities in females with ASD. In summary, this is the first analysis of a large, population-based U.S. cohort with ASD. Given the depth of sampling, the RI-CART study reflects an important new resource for studying ASD in a representative U.S. population. Psychiatric and medical comorbidities in ASD constitute a substantial burden and warrant adequate attention as part of overall treatment. Our study also suggests that new strategies for earlier diagnosis of ASD in females may be warranted. Autism Res 2020, 13: 474-488. © 2020 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: The Rhode Island Consortium for Autism Research and Treatment (RI-CART) represents a unique public-private-academic collaboration involving all major points of service for families in Rhode Island affected by autism spectrum disorder (ASD). In this article, we provide results from the first 1,000 participants, estimated to represent >20% of affected families in the state. Importantly, we find a later age at first diagnosis of ASD in females, which potentially calls attention to the need for improved early diagnosis in girls. Also, we report a high rate of co-occurring medical and psychiatric conditions in affected individuals.

Developmental trajectories of autonomic functioning in autism from birth to early childhood.

Deficits in social engagement emerge in autism during the infant and toddler period and may be related to emotion regulation and stress response systems. This study examined patterns of growth in autonomic functioning related to autism diagnosis and addresses the hypothesis that there are differences in autonomic functioning related to autism in infancy. Heart rate (HR) and respiratory sinus arrhythmia (RSA) were measured at 8 time points from 1 to 72 months of age in infants later diagnosed with autism (n = 12) and a non-autistic comparison group (n = 106). Multilevel models were used to describe the developmental course of HR and RSA and to test the effect of autism diagnosis on growth trajectories. Both groups showed an expected age-related decrease in HR and increase in RSA. Groups did not differ in the rate of decrease of HR over time. However, infants with autism demonstrated a smaller linear increase in RSA, indicating slower growth in RSA over time in comparison to controls. These results suggest that differences in physiological regulation may develop with age in autism. The slowed RSA growth in autism was most evident after 18 months of age, at a time when behavioral symptoms become prominent. This is consistent with the view that RSA is a marker of functional status in autism rather than a cause of social deficits in autism.

Extending the Parent-Delivered Early Start Denver Model to Young Children with Fragile X Syndrome.

This is the first study to evaluate an autism intervention model, the parent-delivered Early Start Denver Model (P-ESDM), for young children with fragile X syndrome (FXS), a known genetic disorder associated with autism spectrum disorder. Four parent-child dyads participated in a low-intensity, parent coaching model of the P-ESDM to evaluate initial efficacy and acceptability. Parents improved in P-ESDM fidelity, implemented intervention goals to increase child learning, and found the experience moderately to highly acceptable. Visual examination and Baseline Corrected Tau effect sizes revealed mixed results across child measures. Findings suggest a potential therapeutic opportunity in need of larger, well-controlled studies of P-ESDM and other interventions for families of young children with FXS who face limited empirically-supported intervention options.

Diminished respiratory sinus arrhythmia response in infants later diagnosed with autism spectrum disorder.

Indicators of risk for developing Autism Spectrum Disorder (ASD) are difficult to detect within the first year of life. In this study, infants who were originally followed prospectively to examine general developmental risks due to substance exposure interacted with their mother and an unfamiliar experimenter for 2-min episodes at 4 months of age. Electrocardiogram was collected to measure respiratory sinus arrhythmia (RSA) and the session was video recorded for behavioral coding. Two groups of infants were compared: infants with a diagnosed ASD outcome (N = 8) and matched controls (N = 186). Infants were compared on mean RSA and infant behavioral codes for each 2-min episode. No significant group differences were revealed on RSA or behavior during interactions between the infants and mothers. However, in response to play with a stranger, infants with an ASD outcome had lower RSA (M = 2.49, 95% CI [2.30, 2.98]) than controls (M = 3.12, 95% CI [3.06, 3.18]). During the interaction with a stranger, lower RSA response was associated with more protesting behaviors (P < 0.01), whereas higher RSA response was associated with more social monitoring (P = 0.001). Lower RSA suggests that 4-month-old infants later diagnosed with ASD exhibited poorer autonomic regulation during interaction with an unfamiliar adult than did controls. Physiological regulation during interactions with a new social partner may be disrupted early in infancy in children with ASD, as indicated here by lower RSA, and therefore be a potential target for developing early risk screening tools for ASD. Autism Res 2018, 11: 726-731. © 2018 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: Autism Spectrum Disorder (ASD) emerges within the first years of life; however, it is difficult to identify children who will develop autism before 12 months of age based on behavioral measures. In a study of infants who were followed from birth, infants who were later diagnosed with ASD had poorer physiological regulation during play with a new adult. With additional evidence, poorer physiological regulation may function as an early sign of ASD risk.

Brief Report: Factors Influencing Healthcare Satisfaction in Adults with Autism Spectrum Disorder.

The current study investigated healthcare satisfaction and factors related to satisfaction in 92 adults with Autism Spectrum Disorder (ASD). Participants or their caregiver completed a survey about their experiences with primary care and specialty physicians. Respondents reported a high level of satisfaction with their healthcare. The only factor significantly associated with satisfaction was age, with participants under age 26 reporting significantly higher levels of satisfaction than participants above age 26. Participants under age 26 also were significantly more likely to live at home, have private health insurance, and have others making their healthcare decisions than participants above age 26. Results indicate that healthcare satisfaction can be high for adults with ASD that have good family and community support.