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Indiana University-Purdue University Indianapolis (IUPUI) / The study examined the impact of the “big 5” personality traits on caregiver burden during the period when individuals with ASD transition from high school. Participants (N = 117) were caregivers of individuals with ASD who either will graduate within two years or graduated from high school within the past two years. Participants completed questionnaires measuring study variables predicted to be associated with caregiver burden as guided by the Double ABCX model of family adaptation, i.e., autism symptom severity, problem behaviors, pile-up of life demands, personality traits, social support, cognitive appraisals, and coping strategies. Primary caregivers reported moderate burden in the transition period. Specifically, although caregivers experienced stress in the transition period, they were less overwhelmed than the period when one’s child first receive the ASD diagnosis. Increased problem behaviors, higher neuroticism, lower extraversion, conscientiousness, and agreeableness, lower levels of social support, fewer use of challenge appraisals, and greater use of threat appraisals and passive-avoidance coping strategies predicted greater caregiver burden. Passive-avoidance coping mediated the relationship between caregiving stress and four personality traits respectively (i.e., neuroticism, extraversion, conscientiousness, and agreeableness). The results support the potential importance of personality traits in explaining differences in caregiver stress in families of those with ASD and further indicated that the association between personality and burden was mediated by caregivers’ use of maladaptive coping strategies, i.e., passive-avoidance coping. The findings also have potential applicability for interventions to reduce caregiver burden. Several factors were identified that could help alleviate the stress. For example, parents should be encouraged to avoid using threat appraisals and passive-avoidance coping strategies. In addition, interventions could be developed to provide support or strategies to parents to handle child’s behavioral problems and thus reduce stress.

Indiana University-Purdue University Indianapolis (IUPUI) / Introduction: The prevalence of those aged 3-25 with an intellectual and developmental disability (I/DD), has increased 17.1% from 1997 to 2008. This study focused on these I/DD: autism spectrum disorder (ASD), cerebral palsy, learning disabilities and spina bifida. Previous studies have found that individuals with an I/DD use health services and the emergency department (ED) more frequently, regardless of payer. Methods: This dissertation will describe and define the characteristics of ED use among children and young adults with an I/DD. A repeated, cross-section of annual data of a national sample distributed by the Agency for Healthcare Research and Quality Healthcare Utilization Project National Emergency Department Sample will be analyzed from 2009-2014. This approach will document the primary clinical reason for ED use, the appropriateness of the need for a visit, and demographic, geographic, and temporal correlates for medical, injury, and psychiatric care visits in the ED. The appropriateness of need will be assessed by the New York University (NYU) Emergency Department Diagnosis Classification method for medical care visits. A logistic regression model will be specified for each visit type. Results: The sample included 386,632 visits with an I/DD diagnosis. The NYU classification method found that 44.6% of all visits for ASD were classified as nonemergent yet the other three I/DD had a non-emergent visit rate ranging 25.9%-28.8%. The ASD sub-sample was 51.8% of all visits for psychiatric care and 50.5% of all visits for injury care. All independent variables tested: admission on weekend, ED trauma level, age, sex, payer source, patient zip code income quarterlies, and patient rurality, were found to be statistically different for each model. Conclusion: The findings indicate the need for development of interventions that are specific to reducing non-emergent ED utilization for children and young adults with a diagnosis of ASD and interventions developed for reduction of emergent ED care for the other I/DD’s. In addition, unique interventions are needed to reduce the utilization of the ED for psychiatric care specifically for the ASD population and utilization of the ED for injury care for all I/DD diagnoses. / 2021-05-08

The number of children being diagnosed with Autism Spectrum Disorder (ASD), an impairment that affects an individual’s social-communication abilities and behavior, is currently 1 in 68. An estimated 50,000 students who have ASD are reaching adulthood and exiting secondary education annually―a phenomenon known as the Autism Tsunami. There is a lack of services available to support this wave of young adults with ASD to be self-sustaining, contributing members of their communities. This is evidenced by the 37% of adults in their early 20s, who have ASD, and who have never worked or attended any postsecondary educational program. Due to the lack of appropriate accommodations in many of these programs, there is a low rate of completion for those who enroll. With an increase in positive educational outcomes in K-12 education, there are a burgeoning number of individuals holding the diagnosis of ASD able to enroll in postsecondary education at IHEs. For these students, the predicament of attending an IHE may pose unique challenges despite their ability to complete academic work. There is an ever-increasing need to support individuals with ASD while they attend IHEs, however there is a scant amount of emerging literature on this topic. This exploratory case study was conducted to gain an in-depth understanding of the ways in which Nathan, a student with ASD, was supported while he attended North Coast University (NCU), with the intent to inform further research, and affect the practice of service providers who work with students with ASD who are attending IHEs. The results of this study yielded an in-depth understanding of how NCU Disability Service providers, David and Richard, and Nathan’s mother, Sandy, supported him as he attended NCU, and of his lived experience of support. The Interactional Model of Disability, a model that views disability as caused by both the individual’s impairment and external environmental influences, was used as the theoretical lens in this study. The findings of this study are as follows. Although Nathan has incredible perseverance and academic ability, without support he would not have had the same level of success. The early proactive, nonacademic approach to supporting students with ASD used by NCU was instrumental in Nathan’s success and in helping him to become more independent. Coaching an intervention used as part of the NCU approach was highly effective for Nathan. David and Richard’s dedication to positive student outcomes played a role in Nathan’s success. Support from his mom was essential, but needed to be invisible. The ubiquitous nature of the issue of disclosure of disability emerged, as well as how Nathan experiences ASD.

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