A Mixed Methods Examination of Mechanisms Underlying Sociodemographic Disparities Over the Transition to Adulthood Among Youth on the Autism Spectrum

项目摘要/摘要 在接下来的一年里，大约50万患有自闭症谱系障碍(ASD)的青少年将进入成年期 十年。由于自闭症谱系的支离破碎，过渡到成年对年轻人来说是一个脆弱的时期 护理系统加上与自闭症相关的社交和适应行为缺陷。年轻的谁 高中毕业后与教育或就业脱节的人面临更大的贫困风险 终生结果，如贫困和心理健康问题。最近一项系统性研究的结果 文献综述显示，低收入和种族/少数民族青年在自闭症谱系上的比例是 高中毕业后可能与教育或就业脱节，因为他们是白人和较高收入者 同伴们。由于过渡到成年是建立成人功能轨迹的关键时期，这一发现 这表明自闭症的差异可能会在向成年期的过渡过程中加剧，并使轨迹永久化。 对于自闭症谱系中的种族/族裔少数群体或低收入青年来说，在一生中功能较差的可能性很大。 健康差距研究的概念框架提出了一个解决健康问题的三阶段模型 差异，包括检测差异，了解差异存在的原因，以及发展和 评估减少差距的干预措施。虽然研究人员已经开始记录差异 ASD向成年期的转变，到目前为止只有一项研究检查了与社会人口学相关的机制 与过渡相关的结果较差的因素。下一步是更深入地了解 差异往往是采用混合方法进行研究。在混合方法研究中，定性研究服务于 将量化结果与背景联系起来，加深我们对潜在差异的过程的理解。 因此，在本申请中，我建议采用混合方法研究种族/民族的机制-- 在自闭症谱系的年轻人中，在过渡到成年期方面存在基于收入的差异。 差异的机制将通过(1)定量检测与 就业或高中毕业后的教育，以及(2)定性地描述有效过渡到 从不同的青少年和年轻人的角度来看，成年和改善这些障碍的想法 关于自闭症谱系和他们的家庭。拟议的研究实现了基于社区的设计 一个由关键利益相关者组成的社区咨询委员会将积极影响研究的所有阶段。这 合作将提高研究结果的相关性和干预建议的可行性。 最终，这项混合方法研究的结果将为潜在的社会人口学过程提供信息 青少年和青壮年在自闭症谱系上的脱节差异及对未来的启示 临床应用。这项提议与NIH机构间自闭症协调委员会的目标密切一致 “满足自闭症患者进入成年期和整个成年期的需求”和“减少 未得到充分服务的人口的机会和成果。

PROJECT SUMMARY/ABSTRACT Approximately 500,000 youth with autism spectrum disorder (ASD) will age into adulthood over the next decade. Transition to adulthood is a vulnerable time for youth on the autism spectrum due to fragmented systems of care coupled with ASD-related deficits in social communication and adaptive behavior. Youth who are disconnected from education or employment after high school graduation are at increased risk for poorer outcomes across the lifespan, such as poverty and mental health problems. Results from a recent systematic literature review revealed that low-income and racial/ethnic minority youth on the autism spectrum are twice as likely to be disconnected from education or employment after high school as their White and higher-income peers. As transition to adulthood is a critical period for setting up trajectories of adult functioning, this finding suggests that ASD disparities are likely to intensify over the transition to adulthood and perpetuate trajectories of poorer functioning across the lifespan for racial/ethnic minority or low-income youth on the autism spectrum. Conceptual frameworks for health disparities research suggest a three-phase model for addressing health disparities that includes detection of disparities, understanding why disparities exist, and development and evaluation of interventions to reduce disparities. While researchers have begun to document disparities over transition to adulthood in ASD, only one study to date has examined mechanisms linking sociodemographic factors to poorer transition-related outcomes. A next step toward a deeper understanding of mechanisms of disparities is often to employ mixed methods research. In mixed methods studies, qualitative research serves to contextualize quantitative findings and deepen our understanding of the processes underlying disparities. Accordingly, in this application, I propose a mixed methods study to investigate mechanisms of race/ethnicity- and income-based disparities over the transition to adulthood among youth on the autism spectrum. Mechanisms of disparities will be explored by (1) quantitatively examining mediators of disconnection from employment or education after high school, and (2) qualitatively characterizing barriers to effective transition to adulthood and ideas to ameliorate those barriers from the perspective of diverse adolescents and young adults on the autism spectrum and their families. The proposed research implements a community-based design in which a community advisory board of key stakeholders will actively shape all stages of the research. This collaboration will increase the relevance of findings and the feasibility of intervention recommendations. Ultimately, the results from this mixed methods study will inform the processes underlying sociodemographic disparities in disconnection among adolescents and young adults on the autism spectrum and inform future clinical applications. This proposal closely aligns with NIH Interagency Autism Coordinating Committee’s goal to “meet the needs of people with ASD as they progress into and through adulthood” and “reduce disparities in access and in outcomes for underserved populations.”