Autism spectrum disorder (ASD) is associated with a variety of physical, mental, and behavioral healthcare needs. However, parents of autistic children consistently report difficulty accessing necessary services, and no instrument has been validated to assess and quantify these barriers for autistic children. The current study aims to adapt and validate the Barriers to Care Questionnaire (BCQ), a pre-existing measure of barriers to healthcare for children with specific healthcare needs, for families of autistic children. The BCQ and theoretically related measures were collected from 242 parents (117 parents of autistic children, 125 parents of non-autistic children). Cronbach’s alpha statistics (ranging from 0.87 to 0.96 for BCQ subscales) provide evidence of reliability for the BCQ. The BCQ subscales were correlated with unmet treatment need, treatment experiences, and theoretically related variables at the child, parent, and family level, providing evidence of convergent validity. Correlations were of low magnitude with theoretically unrelated variables (parent personality and socially desirable responding), suggesting preliminary evidence of discriminant validity. Additionally, the BCQ subscales predicted a significant amount of variance in unmet need and treatment experiences over and above other predictors for autistic youth, indicating incremental validity. Parents of autistic children reported significantly more barriers to care across all subscales of the BCQ than parents of non-autistic children, and the highest average item score was on the “skills” subscale, which measures difficulties with navigating the healthcare system. Results support that the BCQ can be used among autistic youth, and suggest the critical need for family-centered supports and provider education in order to ameliorate barriers to healthcare for autistic children. / M.S. / Autism spectrum disorder (ASD) is related to many physical, mental, and behavioral healthcare needs. However, parents of autistic children state that it is often hard to receive healthcare when their child needs it. No questionnaire exists to measure barriers that make getting healthcare harder for autistic children. Our study adapted the Barriers to Care Questionnaire (BCQ) for families of autistic children. The BCQ and related questionnaires were filled out by 242 parents (117 parents of autistic children, 125 parents of non-autistic children). The BCQ reliably and consistently measured barriers to care in these groups. The BCQ subscales were associated with unmet treatment need, treatment experiences, and other related variables at the child, parent, and family level. The questionnaire was less strongly related to variables that we would not expect to be associated with barriers to care, like personality and social desirability. Also, the BCQ subscales predicted healthcare experiences even when accounting for other factors that might impact access to care. Parents of autistic children reported more barriers to care on all subscales of the BCQ than parents of non-autistic children, and the highest average item score was on the “skills” subscale, which measures difficulties with navigating the healthcare system. Results show that the BCQ can be used among autistic youth, and suggest the need for family-centered supports and provider education in order to improve barriers to healthcare for autistic children.

Autism Spectrum Disorder (ASD) is a neurodevelopmental disorder that presents many challenges for parents and service providers. Unfortunately, there are limited examples of parent-mediated interventions for parents of children with ASD that can help manage behavioral problems, especially those that can be implemented in both urban and rural communities. COMPASS for Hope (C-HOPE) is an 8-week parent-mediated intervention that enhances parent knowledge, behavior management skills, and supportive strategies. Telehealth-based interventions can be especially effective for rural communities due to its ability to address common barriers of geographic location and lack of resources. When implementing this intervention, the ability to decrease child problem behaviors as well as increase parental activation, self-management, perceived competence, and knowledge are essential to determine the efficacy of this treatment. The purpose of the current study is to evaluate these outcomes in the implementation of C-HOPE via telehealth in rural versus urban communities. 20 parents with children from 3-12 years of age with a diagnosis of ASD were sampled from two rural sites and two urban sites in Kentucky. Few differences were noted between the participants in the rural versus urban group at pre-treatment. Following C-HOPE, in the urban area, there were significant treatment effects in parent knowledge outcomes. In the rural areas, a significant effect was found in change of parent self-management skills of toileting issues. Future directions for telehealth treatments for this population are discussed. / M.S. / ASD is a developmental disorder that presents many challenges for parents and providers. Unfortunately, there are limited behavioral treatment options for parents of children with ASD, especially those that can be utilized in both urban and rural communities. COMPASS for Hope (C-HOPE) is a parent intervention that improves parent knowledge, management, and supportive strategies. Technology-based interventions can be especially effective for rural communities due to its ability to address barriers of geographic location and lack of resources. In this intervention, the ability to decrease child problem behaviors as well as increase parental activation, self-management, competence, and knowledge are essential for this treatment to be effective. The current study evaluates these outcomes in C-HOPE using technology in rural versus urban communities. 20 parents with children with ASD, ranging from 3-12 years of age, were sampled from rural and urban areas in Kentucky. Few differences were noted between the participants in the rural versus urban group before treatment. After treatment, in the urban area, there were significant effects in parent knowledge outcomes. In the rural areas, a significant effect was found in change of parent self-management skills. Future directions for technology treatments for this population are discussed.

Self-injurious behavior (SIB) is one of the most dangerous behavioral responses among individuals with autism spectrum disorder (ASD), often leading to injury and hospitalization. There is an ongoing need to measure the triggers of SIB to inform management and prevention. These triggers are determined traditionally through clinical observations of the child with SIB, often involving a functional assessment (FA), which is methodologically documenting responses to stimuli (e.g., environmental or social) and recording episodes of SIB. While FA has been a "gold standard" for many years, it is costly, tedious, and often artificial (e.g., in controlled environments). If performed in a naturalistic environment, such as the school or home, caregivers are responsible for tracking behaviors. FA in naturalistic environments relies on caregiver and patient compliance, such as responding to prompts or recalling past events. Recent technological developments paired with classification methods may help decrease the required tracking efforts and support management plans. However, the needs of caregivers and individuals with ASD and SIB should be considered before integrating technology into daily routines, particularly to encourage technology acceptance and adoption. To address this, the perspectives of SIB management and technology were first collected to support future technology design considerations (Chapter 2). Accelerometers were then selected as a specific technology, based on caregiver preferences and reported preferences of individuals with ASD, and were used to collect movement data for classification (Chapter 3). Machine learning algorithms with featureless data were explored, resulting in individual-level models that demonstrated high accuracy (up to 99%) in detecting and classifying SIB. Group-level classifiers could provide more generalizable models for efficient SIB monitoring, though the highly variable nature of both ASD and SIB can preclude accurate detection. A multi-level regression model (MLR) was implemented to consider such individual variability (Chapter 4). Both linear and nonlinear measures of motor variability were assessed as potential predictors in the model. Diverse classification methods were used (as in Chapter 3), and MLR outperformed other group level classifiers (accuracy ~75%). Findings from this research provide groundwork for a future smart SIB monitoring system. There are clear implications for such monitoring methods in prevention and treatment, though additional research is required to expand the developed models. Such models can contribute to the goal of alerting caregivers and children before SIB occurs, and teaching children to perform another behavior when alerted. / Doctor of Philosophy / Autism spectrum disorder (ASD) is a prevalent developmental disorder that adversely affects communication, social skills, and behavioral responses. Roughly half of individuals diagnosed with ASD show self-injurious behavior (SIB), including self-hitting or head banging), which can lead to injury and hospitalization. Clinicians or trained caregivers traditionally observe and record events before/after SIB to determine possible causes (“triggers”) of this behavior. Clinicians can then develop management plans to redirect, replace, or extinguish SIB at the first sign of a known trigger. Tracking SIB in this way, though, requires substantial experience, time, and effort from caregivers. Observations may suffer from subjectivity and inconsistency if tracked across caregivers, or may not generalize to different contexts if SIB is only tracked in the home or school. Recent technological innovations, though, could objectively and continuously monitor SIB to address the described limitations of traditional tracking methods. Yet, “smart” SIB tracking will not be adopted into management plans unless first accepted by potential users. Before a monitoring system is developed, caregiver needs related to SIB, management, and technology should be evaluated. Thus, as an initial step towards developing an accepted SIB monitoring system, caregiver perspectives of SIB management and technology were collected here to support future technology design considerations (Chapter 2). Sensors capable of collecting the acceleration of movement (accelerometers) were then selected as a specific technology, based on the reported preferences of caregivers and individuals with ASD, and were used to capture SIB movements from individuals with ASD (Chapter 3). These movements were automatically classified as “SIB” or “non-SIB” events using machine learning algorithms. When separately applying these methods to each individual, up to 99% accuracy in detecting and classifying SIB was achieved. Classifiers that predict SIB for diverse individuals could provide more generalizable and efficient methods for SIB monitoring. ASD and SIB presentations, however, range across individuals, which impose challenges for SIB detection. A multi-level regression model (MLR) was implemented to consider individual differences, such as those that may occur from diagnosis or behavior (Chapter 4). Model inputs included measures capturing changes of movement over time, and these were found to enhance SIB identification. Diverse classification models were also developed (as in Chapter 3), though MLR outperformed these (yielding accuracy of ~75%). Findings from this research provide groundwork for a smart SIB monitoring system. There are clear implications for monitoring methods in prevention, though additional research is required to expand the developed models. Such models can contribute to the goal of alerting caregivers and children before SIB occurs, and teaching children to perform another behavior when alerted.

The ‘Structured Days Hypothesis’ suggests during less-structured periods, such as summer months or weekend days, children’s physical activity (PA) is lower and thus, may be detrimental to health. Exploring this hypothesis in children with autism spectrum disorder (ASD) is important, given they are less active and tend to prefer structure and routine compared to neurotypical peers. Weekend days are similar to summer days since both have reduced structure in comparison to the consistent weekday routine. The purpose of this review was to examine differences in PA levels of children with ASD during weekend days versus weekdays. Three databases (PubMed, APA PsycInfo, and ERIC) found 604 studies for screening. Seven studies met inclusion criteria (e.g., children 5-13 years, ASD diagnosis, weekend day and weekday PA outcomes). Three of the seven studies reported PA was greater on weekdays, two reported that PA was greater on weekend days, and two reported no differences. Findings provide researchers with insight into potential differences in PA of children with ASD during weekdays versus weekend days. Further studies are needed that purposefully measure PA during different environments to help inform PA interventions targeting children with ASD.

Findings related to the adjustment of typically-developing (TD) siblings of children with Autism Spectrum Disorder (ASD) have been inconsistent, but suggest that most function well over time. The current mixed methods study investigated the relationship between family factors, especially disruptions to family routines, and academic functioning of TD siblings. Measures of family functioning, parenting stress, and parenting daily hassles were collected from parents (n = 20); an additional 19 families also completed semi-structured interviews (total n = 39). Teacher reports on classroom functioning (n = 25) and report cards were also collected. All parent participants (92% Caucasian, 90% married, 79% college-educated) had a child with an ASD diagnosis (80% male, M age = 11.74) and a TD child (62% male, M age = 10.31 years). Seventy-two percent of TD siblings (n = 18) had scores above the mean on the Academic Performance Rating Scale (DuPaul, Rapport, and Perriello, 1991), and 91% (n = 32) had grade averages of B or higher. Ninety-six percent (n = 24) of TD siblings had scores within the normative range on the Learning Problems and School Problems scales of the Behavior Assessment System for Children, Second Edition (BASC-2; Reynolds and Kamphaus, 2004). Daily hassles were not significantly correlated with any school measures for the TD siblings. Families with children with more severe ASD symptoms discussed greater frequencies of emotional outbursts in the child with ASD and missed social opportunities as a family. Families of children with externalizing behaviors may particularly benefit from targeted support. / Ph. D.

Deficits in social functioning in individuals with autism spectrum disorder (ASD) may be explained in part by the limited salience of or reward value associated with the social world, relative to individuals with typical development (e.g., Jones and Klin, 2008; Mundy, 1995; Mundy and Neal, 2005). However, despite many calls for the use of ecologically valid, rich, complex stimuli when investigating deficits in social attention and interest in ASD, few studies have adopted these recommendations. The current study investigated social interest in a non-clinical college student population (n = 78; 72% female; M age = 20.41 years) by analyzing participants' verbal descriptions of dynamic film clips. It was predicted that as level of self-reported ASD characteristics increased, proportions of verbal descriptions devoted to higher-level social information (e.g., relationships, mental or emotional states) would decrease, while holding self-reported social anxiety, autonomic flexibility (i.e., heart rate variability), and verbal ability constant. In other words, self-reported ASD characteristics were hypothesized to impact social interest above and beyond the effects of other predicted covariates. Results, however, did not reveal significant differences in social interest across varying levels of ASD characteristics, and neither social anxiety nor autonomic flexibility served as a moderator of this association. Variations of the current study and the inclusion of a clinical population are discussed as possible future directions to refine the study and better target intervention efforts aimed at ameliorating social deficits in ASD. / Ph. D.

The broad autism phenotype (BAP) has been defined both behaviorally and biologically. There has been little research on the association of the BAP, behaviorally defined, with neural or cognitive biomarkers typically associated with Autism Spectrum Disorder (ASD). People diagnosed with ASD tend to show reduced gaze fixation toward the eye region, but much less eye-tracking research has been done related to the BAP (Boraston & Blakemore, 2007). In this study, we sought to assess eye gaze patterns in people with the behaviorally defined BAP, as defined by a score of 30 or above on the Autism Spectrum Quotient (AQ; Baron-Cohen et al., 2001). It was hypothesized that the BAP group participants would exhibit longer average fixation duration to the eye region during an emotion recognition condition, relative to a free-viewing condition, whereas the comparison group participants (defined as an AQ score of 24 and below) would not show a difference in fixation duration to the eye region between conditions. Nine hundred and thirty-nine undergraduates completed an online survey, and 45 of these students (15 BAP group and 30 comparison group) participated in the eye-tracking session, where they viewed a series of human faces, each presented twice within a condition. Results revealed a significant negative relationship between social anxiety and eye region fixation duration in the free-viewing condition, for both presentations of faces. Contrary to expectation, BAP predicted longer eye region fixation duration in the free-viewing condition, for the second presentation of faces. Possible explanations for these surprising findings are discussed. / Master of Science

In addition to social communication deficits, restricted repetitive behaviors (RRBs) are a key diagnostic feature of autism spectrum disorder (ASD). Two theories regarding the etiology of RRBs in ASD have been proposed: the hyper-arousal theory, and the hypo-arousal theory. Both of these theories posit the autonomic nervous system (ANS) as being dysfunctional in ASD, resulting in the occurrence of RRBs. Many studies investigating ANS activity in ASD have focused solely on its relation to social functioning. The few that have addressed RRBs have had inconclusive findings. Not only do the current theories and studies simplify ANS activity to a measure of baseline arousal levels through vague measures such as heart rate (HR) and skin conductance response (SCR), but the literature has also framed the theories as mutually exclusive. This study used respiratory sinus arrhythmia (RSA) patterns in children with and without an ASD diagnosis as an indicator of ANS functioning to analyze its relationship to the manifestation of RRBs. Baseline RSA and RSA reactivity were found to predict RRB severity and exploratory analyses revealed that these measures were associated with specific subgroups of RRBs. These results are discussed in regards to the current behavioral literature on RRBs and the benefits of finding biomarkers for these behaviors. / Master of Science

Prior research has shown that both emotion recognition and expression in children with Autism Spectrum Disorder (ASD) differs from that of typically developing children, and that these differences may contribute to observed social impairment. This study extends prior research in this area with an integrated examination of both expression and recognition of emotion, and evaluation of spontaneous generation of emotional expression in response to another person's emotion, a behavior that is characteristically deficient in ASD. The aim of this study was to assess eye gaze patterns during scripted and spontaneous emotion expression tasks, and to assess quality of emotional expression in relation to gaze patterns. Youth with ASD fixated less to the eye region of stimuli showing surprise (F(1,19.88) = 4.76, p = .04 for spontaneous task; F(1,19.88) = 3.93, p = .06 for the recognition task), and they expressed emotion less clearly than did the typically developing sample (F(1, 35) = 6.38, p = .02) in the spontaneous task, but there was not a significant group difference in the scripted task across the emotions. Results do not, however, suggest altered eye gaze as a candidate mechanism for decreased ability to express an emotion. Findings from this research inform our understanding of the social difficulties associated with emotion recognition and expression deficits. / Master of Science

Emerging adults who have Autism Spectrum Disorder (ASD) often encounter difficulties within the university setting. Despite an increase in the number of students with ASD enrolled in postsecondary educational institutions, there are few reports on the social, academic, and/or other needs of college students with ASD. The purpose of this study was to assess the perspectives of parents of emerging adults with ASD and ADHD, in order to inform efforts to address the poor postsecondary outcomes of students with ASD. Survey data were collected from parents who had a son or daughter in one of three educational placement groups (parents of high school students, parents of postsecondary students, and parents of individuals aged 18-25 not enrolled in education) among two disorders; ASD and ADHD. Participants were recruited nationally to participate in an online survey. Parents of emerging adults with ASD identified social interactions and daily living as primary difficulties for their son or daughter with ASD. Significant differences emerged with respect to difficulties among emerging adults with ADHD, who identified difficulties related to executive functioning and attention. Social interaction training was an identified needed service by parents of emerging adults with ASD. Additionally, independent living training was a common core service requested by parents of individuals with ASD and parents of individuals with ADHD. Results suggest that the postsecondary profile of parent-reported difficulties and needed services remains distinct for the diagnostic groups ASD and ADHD. These difficulties should be considered within the context of intervention for postsecondary students with ASD and ADHD. / Master of Science