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The Sensory Experiences Project

September 30, 2016

To examine the development, functional impact, and cause of various sensory features in children with autism, developmental delay, and/or typical development, ages 2-12 years. SEP is part of the PEARLS program (Program in Early Autism Research, Leadership and Service) at UNC.

TEACCH School Transition to Employment and Post-Secondary Education Program

September 30, 2016

As the number of children diagnosed with Autism Spectrum Disorder (ASD) rises, there will be an increasingly large adult population for whom the challenges of gaining productive, long-term employment will likely overwhelm our current adult service programs. Current employment rates for individuals with ASD are low, with only 18% of young adults with ASD reported to be involved in competitive or supportive employment. Through the support of two previous community service grants, the TEACCH Autism Program created six employment skills modules targeting pivotal organizational and social-emotional skills essential to successful employment. Two modules target organization/executive function skills (approaching tasks in an organized manner, time management), two modules target social skills (asking for help, engaging in social niceties), and two modules target emotional regulation skills (accepting corrective feedback, coping with being upset in the moment). Each module integrates social skills techniques, cognitive behavioral techniques, and TEACCH structured teaching techniques. The intervention modules have received high praise from school and community-based partners. However, little data has been gathered about the effectiveness of this program in teaching employment skills to the students with ASD. The focus of the current proposal is to conduct a pilot study to examine the effectiveness of the TEACCH employment skills modules for adolescents and young adults (16-21) with ASD. Approximately 30 high school students with ASD will receive the employment skills program. Each student will receive 18 intervention sessions through their home high school. Additionally, each student will participate in a school-based employment activity to provide an opportunity to practice intervention skills in an employment setting. Employment skills will be measured before and after the intervention. We predict that the intervention will lead to increased on-task work behavior, increased job-related social skills behavior, and improved coping with corrective feedback and changes in routine within a work environment. While we are intervening with high school students, the goal is to develop a program to improve adult vocational outcomes.

Project Core

September 30, 2016

ABSTRACT Project CORE Project CORE is designed to develop products and services that support the implementation of a core vocabulary approach to augmentative and alternative communication for school-aged students with significant cognitive disabilities who also have complex communication needs. The evidence-based and empirically derived core vocabulary approach is expected to support students with significant cognitive disabilities in developing symbolic communication that can be used across contexts while supporting improved academic success. The core vocabulary approach is designed to grow with students within and across school years as educational teams used data to determine when and how to increase the complexity of the system. An iterative development cycle will be used to develop, evaluate, and revise products and services required to effectively implement the core vocabulary approach. By improving access to evidence-based, flexible, and broadly applicable core vocabulary and improving its integrated implementation in academic instruction, students with significant cognitive disabilities are expected to improve communicative competence, symbolic communication, and ELA outcomes. The Implementation Drivers approach (Blase, van Dyke, & Fixen, 2013) will guide the evaluation of the project implementation while overall project performance will be evaluated with a combination of measures of fidelity of implementation, and student communication, language, and literacy outcomes.

Precursors to the Development of Anxiety Disorders in Young Children with Autism Spectrum Disorder

September 30, 2016

Anxiety disorders are extremely common among individuals with autism spectrum disorder (ASD), occurring at four times the rate of the general population. The presence of an anxiety disorder negatively affects family functioning, friendship development, and school functioning. Recent research is beginning to provide some clues regarding early risk factors for anxiety in individuals with ASD. Specifically, studies suggest that sensory over-responsivity (SOR) – a set of symptoms characterized by heightened and unusual reactivity to sensory stimuli that occurs more frequently among children with ASD than typically developing children – is associated with anxiety in individuals with ASD. We hypothesize that many of the negative outcomes associated with sensory over-responsivity (SOR), such as avoidance, aggression, and GI problems, primarily occur when SOR leads to the development of an anxiety disorder. The goal of the present research is to conduct an in-depth study of the relationship between SOR and anxiety symptoms in preschool age children with ASD, using parent report, observation, and brain-based measures (brain waves or EEG).

Perceptions of Parents of Children with Autism Spectrum Disorder about Early Intervention Services

September 30, 2016

This project examines the perspectives of parents of young children (birth to eight years) with Autism Spectrum Disorder (ASD) related to the facilitators and challenges across three key time points: between first concerns and consulting with a professional, up through the diagnosis, and through entry into early intervention. Eight focus groups (4 English speaking, 2 Spanish speaking, 2 American Indian) were conducted with 55 caregivers. Results will be helpful in addressing needs of families of children with ASD.

Patterns and Variations in Emergency Department Visits for U.S. Children with Autism: A Rural-Urban Comparison

September 30, 2016

This proposed research addresses HRSA-MCH’s priority interest in health services utilization among children with autism and rural-urban differences. A recent study indicated that children with autism were more likely to visit an emergency department (ED) for psychiatric problems compared to children who don’t have autism. However, no research has explored how rural-urban differences are associated with ED visits for children with autism. This proposed study intends to fill this research gap through two specific aims: 1) examine rural-urban differences in the likelihood of ED visits, child characteristics associated with visits, and clinical measures of ED visits for U.S. children with autism, based on child’s residence location in rural or urban areas, and 2) describe differences between rural and urban hospitals regarding specific reasons for using the ED, volumes of ED visits, costs and clinical measures associated with these visits for U.S. children with autism; in addition, examine the determinants of hospital ED charges involving pediatric autism diagnosis in rural versus urban hospitals. We will use the 2010 and 2011 Nationwide Emergency Department Sample (NEDS), a database maintained by the Agency for Healthcare Research and Quality as a part of the Healthcare Cost and Utilization Project. We will investigate the rural-urban differences in ED visits for children with autism, by patient residence and by hospital location, respectively. Multilevel regression models will be used to correct for the non-independence of individual-level observations nested within hospital EDs and to determine whether disparities in ED utilization exist between children with autism in rural and urban settings. The proposed study will produce insights into the development of potential measures for comparison in future studies to assess the impact of health care coverage changes on health services utilization. The enactment of ACA and the implementation of the autism insurance mandate make this an opportune time for such research. This proposal represents one of the first studies to use the largest national dataset to study rural and urban differences in the utilization of autism-related ED services among children in the United States. Health interventions and health policies should carefully consider the nature of a distinct rural challenge with respect to access and utilization of health services for rural children with autism. The findings will contribute to a better informed policy and practice regarding health care utilization among children with autism in rural and urban areas.

North Carolina Child Development Survey Cohort 2 (FYI 3.1)

September 30, 2016

Autism Spectrum Disorder (ASD) is not formally diagnosed before a child is 2-3 years old, but research has identified a wide array of atypical behaviors that can be seen in infants who will eventually receive a diagnosis. We developed a parent-report survey called the First Year Inventory to identify these pre-diagnostic behaviors in 1-year-olds, collected a large sample of normative data, and conducted a longitudinal follow up study. Results indicated that the questionnaire does indeed identify infants who are at-risk for an eventual diagnosis of ASD. The current project updates the screening tool, now called the First Years Inventory (FYI) with modified versions of the original questions plus new questions based on recent research, and it extends the age range to 9-16 months. We have collected normative FYI data from 7,000 families in NC with an infant born in 2013, and followed these families longitudinally to collect additional data at 2 years. The current wave of data collection is to determine diagnostic outcomes for ASD at 3 years.

Executive Function in Pediatric Hypertension

September 30, 2016

The goal of this multisite study is to investigate the relationship between primary hypertension and executive function as a novel, emerging target of hypertensive damage in children.

Autism Spectrum Disorder State Implementation Project

September 30, 2016

The goal of this project is to increase the collaboration among public and private agencies in the state of North Carolina in order to improve screening, assessment, diagnosis, and early intervention for children suspected of ASD ages birth to 5.

Improving sweat testing performance: a multi-center collaborative initiative towards earlier diagnosis of infants with CF and positive CF newborn screening tests

September 30, 2016

We aim to reduce sweat testing quantity not sufficient (QNS) rates in infants who are referred to Cystic Fibrosis Foundation Accredited Care Centers for follow-up testing after a positive newborn screening (NBS) test. It is important to do this now because there is evidence of both high QNS rates at some centers. Additionally a significant percentage of infants diagnosed with CF through the newborn screening system do not have a confirmatory sweat test reported in the first months of a CF diagnosis. Furthermore, QNS sweat tests can delay the diagnosis and treatment of infants with CF, thus reducing the benefit of newborn screening to individuals, their families, and the public health system. We hypothesize that a structured sweat test performance improvement program focused on collecting adequate sweat specimens from infants will reduce the QNS rate in newborns to less than 10% at participating CF Centers. Our specific aims are: 1. To assure that all staff who perform sweat tests, and their supervisors, receive in-depth education on optimal sweat test collection in infants. 2. To distribute andimplement the use of a Sweat Test Checklist designed to continuously refresh knowledge of optimal techniques for sweat test collection, supporting participating sites in local process improvement using the Checklist as a key tool 3. To build sustainable systems for maintenance of low sweat test QNS rates at participating sites.