Julie L. Taylor - US grants

DESCRIPTION (provided by applicant): This application for an NIMH Mentored Research Scientist Career Development (K01) award seeks support to develop a program of research focused on the roles of biological stress response, behavioral functioning, and environmental resources in promoting a successful transition to adulthood for youth with autism spectrum disorders (ASD). Exiting high school is a challenging time for these youth, given the loss of services through the school system. Because the hypothalamic-pituitary-adrenal (HPA) axis modulates an individual's ability to react emotionally and physiologically to challenging environments, its dysfunction is a promising biological factor that might exacerbate poor outcomes for these young adults. Thus, a central component of the training plan is mentorship in HPA axis functioning and stress response as it relates to ASD. The second key component of the training plan is mentoring in clinical research skills. The candidate is a developmental psychologist with no clinical training, and thus she has relied on clinicians to recognize autism symptoms and diagnose ASD in her research. Furthermore, comorbid psychiatric disorders are extremely common in youth with ASD but can be difficult to recognize because their symptoms often overlap with symptoms of ASD. Because the absence of comorbid psychiatric disorders is an important component of positive adult outcomes, it is important to recognize their occurrence. The candidate will also pursue training in: 1) Measuring the quality and availability of disability-related services in the school and adult-service systems; 2) Conducting longitudinal research among families of youth with ASD; 3) Developing additional methodological and statistical expertise to analyze complex diurnal cortisol and longitudinal data; and 4) Behavioral intervention research. Together, this training will allow for the identification of risk factors for poor transition that are malleable (such as stress response or family environment). As part of the candidate's career development plan, she proposes a longitudinal study of youth with ASD who are preparing to exit high school. This project aims to: 1) Investigate the changes in and inter-relations among stress response profiles, behavioral profiles, and environmental resources as youth with ASD transition to adulthood; and 2) Investigate how adult outcomes are predicted by baseline measures (collected while in high school) and changes in stress response profiles, behavioral profiles, and environmental resources. Youth will be recruited during their final year of high school, with data collection at approximately 6 months before they exit school as well as 6 and 18 months after exit. At each time point, semi-structured observations will be used to examine autism symptoms and diagnosis, and diurnal cortisol will be collected. Mothers will report on their son or daughter's autism symptoms, behavior problems, daily activities, disability-related services, family warmth and criticism, and their own mental health. At the second time point (6 months after exit), a social stressor paradigm will be used (along with cortisol collection) to measure acute biological stress response among these youth. As a result of this research, the candidate will be able to identify malleable risk factors, that when aided could promote positive adult outcomes and better transitions to adulthood. So far, poor outcomes for adults with ASD have been linked only to static, unchanging risk factors such as low IQ and poor early language. Yet due to the surge of children with ASD exiting school systems and the high public costs of ASD, it is critical to examine risk factors that are amenable to intervention. The candidate plans to use the expertise gained through this award to develop an R01 grant proposal investigating long-term patterns of biological, behavioral, and family risk and resiliency following high school exit for youth with ASD compared to peers without ASD, with the long-term goal of developing and studying interventions to promote transition success.

DESCRIPTION (provided by applicant): In the proposed research, we first adapt an existing parent advocacy training program (the Volunteer Advocacy Project, or VAP) to meet the needs of families of youth with autism spectrum disorders (ASD) who are transitioning to adulthood. In a randomly assigned, wait-list control design with 6- and 12-month follow-ups, we then investigate the efficacy of this revised Volunteer Advocacy Project-Transition (or VAP-T). Despite poor outcomes for young adults with ASD and the general inaccessibility of adult services, few transition-focused interventions to assist these young adults and their families are evidence-based. Moreover, most existing approaches either train these youth in social or other skills or endeavor to increase a state or locality's stock of adult disability services. In the proposed research, we adopt a complementary approach, adapting and pilot testing an intervention to increase parents' skills in advocating for their son or daughter with ASD during the transition to adulthood. We propose four Specific Aims: (1) To adapt the VAP to address the needs of transitioning youth with ASD, to test the feasibility and acceptability of the adapted intervention (VAP-T) and of the research design, as well as the fidelity of the VAP-T; (2) To conduct preliminary tests to determine whether participation in the VAP-T is associated with improvements in parents' ability to advocate for their offspring, in service receipt, and in outcomes of the youth with ASD; (3) To conduct preliminary examination of moderators of treatment response; and (4) To produce a VAP-T manual based on results from the proposed research. To investigate these Aims, during Year 1 we will adapt the VAP into the VAP-T, consulting extensively with an Advisory Board comprised of families of youth with ASD, youth themselves, experts in ASD and in the transition to adulthood, and autism and adult-disability service organizations. We will then deliver the intervention to a trial group of parents of young adults with ASD, and use their feedback for further revisions. During Years 2 and 3 of the award, we will conduct a small randomized-controlled trial with a wait-list control group to gather data on feasibility, acceptability, and fidelity of the intervention and of the research design. We will collect data on our primary outcomes of advocacy knowledge, skills, and comfort, as well as on service use and outcomes of the youth with ASD at 6-months and 12-months post-intervention. With this pilot data, we will conduct initial tests of efficacy, as well as gather preliminary data to aid in proposing a larger randomized- controlled trial of the VAP-T, to be delivered at multiple sites. Given the high prevalence of ASD, the preponderance of poor outcomes for adults with ASD, and the remarkable variability in the availability of adult services, developing and testing an intervention that is applicable across the array of adult support landscapes is of critical concern and highly significant, with potential for marked impact on intervention and practice.

PROJECT SUMMARY With the rising prevalence of autism spectrum disorders (ASD), increasing numbers of youth with ASD exit high school with each passing year. Adolescence and adulthood are times of significant risk for those with ASD; many face challenges in academic achievement, vocational stability, social connectedness, and mental health. These wide-ranging needs often result in significant public costs. Many of the vulnerabilities faced by adolescents and adults with ASD are also shared by women in the general population; thus, women with ASD might be doubly-vulnerable, by virtue of having an ASD and being a woman. Yet, the vast majority of studies on outcomes among adolescents and adults with ASD use samples that are primarily male, and thus the unique needs of women with ASD are mostly unknown. Further, the extant research on sex differences in ASD is fragmented, with no over-arching framework to guide integration of findings, and with little knowledge about potential psychosocial mechanisms responsible for sex differences that emerge. The objective of this research is to conduct secondary data analysis on three existing datasets, to develop a new evidence base on the academic, self-determination, vocational, social, health, mental health, and service utilization outcomes of adolescent and adult women with ASD. We will examine sex differences in these outcomes, allowing us to identify areas where women are uniquely vulnerable as well as areas in which vulnerabilities are shared with men with ASD. We propose three tightly-integrated Specific Aims: (1) We will use the Center on Secondary Education for Students with Autism Spectrum Disorders (CSESA) database of 546 well-characterized adolescents with ASD (20% female) to examine sex differences in school achievement, self-determination, vocational readiness, social participation, mental health conditions, and service use; (2) Using data to be collected in 2016/2017, we will examine an Interactive Autism Network (IAN) national sample of adults with ASD (expected n ? 260, 65% female) and caregivers of adults with ASD (expected n ? 150, 25% females) to test for sex differences in post-secondary educational and vocational experiences, service receipt, physical and mental health conditions, social participation, and discrimination experiences; and (3) We will use electronic health records from the Marshfield Clinic ? one of the largest, private, multispecialty group practices in the United States ? to examine sex differences in physical and mental health conditions and healthcare utilization for adults with an autism diagnosis as identified in their medical records (approximate n = 1,000, ~25% female). For both the CSESA and Marshfield datasets, we will examine if sex differences are more apparent over time or with increasing age. For all datasets, possible psychosocial mechanisms of sex differences will be explored (e.g., discrimination, health care utilization). Completion of the Aims will result in an evidence-base to guide future research and interventions focused on better serving women with ASD during adolescence and adulthood.

PROJECT SUMMARY In the proposed research, we conduct a randomized-controlled trial with 180 families to test the effectiveness of a parent advocacy training to improve the transition to adulthood for youth with autism spectrum disorder (ASD). The years immediately after high school exit are a critical time period that either makes or breaks a successful transition to adulthood. If they don't go well, disengagement from post-secondary education, work, and social isolation can persist throughout adulthood, leading to significant societal costs. Despite the pressing need to better support youth with ASD during this turbulent time, few interventions for these youth have been developed and even fewer tested. Our preliminary work has demonstrated the efficacy of a 12-week parent training program targeting parents' ability to advocate for services on behalf of their offspring (called the ?Volunteer Advocacy Program-Transition? or VAP-T), in improving the transition to adulthood for youth with ASD. Relative to a wait-list control group, youth whose parents participated in the VAP-T were more likely to be employed or in post-secondary education, and they received more school-based and adult services. The proposed project builds on this pilot work in four important ways: 1) by making modifications to the VAP-T content to make it nationally-applicable and testing whether the VAP-T is effective when delivered across three states; 2) by incorporating the perspective of offspring with ASD into the intervention and data collection; 3) by examining mechanisms by which the VAP-T influences youth outcomes; and 4) by exploring barriers to participation and factors that moderate treatment response. We hypothesize that participating in the VAP-T will improve parents' advocacy ability, leading to higher rates of employment, post-secondary education, social participation, and service access for youth with ASD. We will test this hypothesis by randomly assigning parents of transition-aged youth with ASD (ages 16-26) to either a treatment or active, materials-only control group, and following families over 3 years. We propose four Specific Aims: (1) To use a multi-site randomized- controlled trial to examine whether VAP-T participation increases parent advocacy ability (i.e. the intervention target); (2) To test whether participating in the VAP-T leads to improved youth outcomes (employment, post- secondary education, social participation, service access) during the transition to adulthood; (3) To examine which aspects of parent advocacy ability mediate the relations between VAP-T participation and youth outcomes; and (4) To explore moderators of treatment response and barriers to participation in the intervention. By rigorously testing a new intervention to improve the transition to adulthood for youth with ASD, the proposed research addresses an area of critical need as identified by the 2016-7 Interagency Autism Coordinating Committee Strategic Plan. The project will result in a new intervention to improve outcomes for youth with ASD that can be disseminated through state and local agencies across the nation.

PROJECT SUMMARY/ABSTRACT Difficulties in employment and postsecondary education (PSE) among young adults with ASD (YA-ASD) are nearly universal. In response, interventions have been developed that target obtaining a job or gaining admittance to a PSE program. However, our preliminary research suggests that maintaining a job or PSE enrollment is more difficult than obtaining those positions in the first place, and the predictors of keeping a job (e.g., family climate, community size) are different than those associated with starting a job (e.g., autism severity, IQ). These studies suggest the need for new interventions focused on maintaining employment or PSE. Further, vocational instability (e.g., losing a job) is a significant predictor of poor mental health in the general population, and might be responsible, at least in part, for the very high rates of co-occurring psychopathology among YA-ASD. The objective of the proposed research is to lay the groundwork for novel interventions to promote sustained employment/educational participation, by prospectively examining predictors and potential consequences of postsecondary employment and educational instability (i.e., loss of/change in employment or educational position that is not reflective of upward mobility) for YA-ASD. To accomplish this objective, we will collect prospective longitudinal data from 200 YA-ASD and their parents at 7 times over a 3-year period. We will recruit young adults who have exited high school, between the ages of 18 and 26, who have an IQ score of 70 or above. We will use multiple informants (self, parent) and multiple methods (interviews, questionnaires, permanent products, diagnostic evaluations) to measure individual, family, and community factors, and employment/educational instability during the transition years. We propose four Aims: 1) To determine rates of instability in postsecondary employment/education over a 3-year period, and differentiate instability from upward mobility as experienced by YA-ASD: 2) To examine individual, family, and community factors that predict postsecondary employment/educational activities at the first wave of data collection, and instability in these activities over a 3-year period: 3) To examine bidirectional effects of employment/educational instability and changes in autism severity, mental health, adaptive behavior, and quality of life for YA-ASD: and 4) Using well-validated measures new to ASD research along with open-ended questions and permanent products, we will explore specific aspects of work/PSE activities and environment (job characteristics and experiences, job satisfaction, workplace environment, supports) associated with stability/instability. This study is responsive to the 2016-17 Interagency Autism Coordinating Committee Strategic Plan by using a longitudinal prospective design and collecting data with enough specificity to inform targeted interventions. The project will have high public health impact by providing new knowledge that can be translated rapidly into novel interventions to support YA-ASD in maintaining employment/educational positions.