Research about the lives of adolescents and adults on the autism spectrum has lagged far behind research focused on children. Our research team has found that many individuals diagnosed with an autism spectrum disorder (ASD) during childhood face difficult experiences at school, work, and in the social world during adolescence and adulthood. However, we do not know how to improve these everyday experiences in order to increase happiness and well-being – something that everyone deserves. This study focuses on understanding the influence of social, educational, and work experiences on psychological health for transition-aged youth with autism spectrum disorders
Study purpose and participants
The purpose of this study is to identify which specific day-to-day experiences are problematic, which experiences are beneficial, and which experiences are connected to negative outcomes like anxiety and depression. We expect that this information will lead to new interventions and programs for improving the daily lives of adolescents and adults on the autism spectrum. We also understand that not everyone reacts to the same experiences in the same ways, so we are especially excited to learn more about how interventions might be personalized to be more effective.
If you are invited to be in this study is because your family participated in the Simons Simplex Collection (SSC) and gave permission to be contacted for other research studies. Our goal is to build a community of adolescents and adults on the autism spectrum (and their parents) whom we can follow over time to examine how life unfolds, and how this unfolding is related to day-to-day experiences and psychological health.
The first step of this project is to identify a group of adolescents/adults and parents who are interested in being included in our community. In the initial phase of the project, we will ask you to fill out a series of “baseline” questionnaires over the internet so that we can get an update about your life (for adolescents/young adults on the autism spectrum) or your son/daughter’s life (for parents). If you prefer, these measures can also be done using pencil/paper or by telephone. It will take about 60 minutes for you to complete this portion of the study. We will then conduct a phone interview of between 45 minutes to 60 minutes with the young adult participant. The youth will also download an app that will send them brief surveys (about 5 minutes) to complete every day for one week. Your family will receive a total of $125 for participation: $75 for the youth and $50 for the parent.
Please know that your participation is voluntary, and you are always free to choose whether or not to participate. Also, if you are interested in being in the research community but do not want to participate at this time, we will contact you at later times for participation.
We believe this is an unprecedented opportunity to understand more about the day-to-day lives of individuals on the autism spectrum and for you to tell us what you think and how you feel about things. This information is critical to designing interventions and service programs that are effective in improving psychological health and well-being. We would be very happy if you would join us so that your voice is heard.
Study research team
We are experts in the transition to adulthood, autism research, and social, academic, and vocational experiences. We think deeply and creatively about how to improve the lives of individuals on the autism spectrum.
Julie Lounds Taylor, PhD is an Associate Professor of Pediatrics at Vanderbilt University Medical Center and an Investigator at the Vanderbilt Kennedy Center for Research on Human Development. Dr. Taylor is an international leader in the study of how to improve the transition to adulthood and adult outcomes for individuals on the autism spectrum. With over 70 peer-reviewed publications, she has made important discoveries about the challenges faced by many individuals on the autism spectrum after leaving high school, and the importance of engaging in meaningful work for positive behavioral development. After observing the difficulties families were experiencing in accessing adult disability services, Dr. Taylor and her colleagues developed a program to support families in navigating adult service systems, which she is currently testing in a clinical trial in three states in the U.S. She provides expertise in transition and adult-related issues to federal autism committees and initiatives, and is currently co-leading a national working group on health and mental health for individuals on the autism spectrum.
Somer Bishop, PhD is an Associate Professor and psychologist in the Department of Psychiatry’s STAR Center for ASDs and NDDs at the University of California San Francisco (UCSF). Dr. Bishop’s research and clinical interests focus on the assessment of social-communication and restricted and repetitive behaviors characteristic of autism spectrum disorders (ASD). In the past several decades, researchers have made significant progress toward identifying and assessing ASD-related symptoms and behaviors. However, there is still a great deal to be learned about the specific profiles of ability and disability characteristic of individuals with different developmental disorders and neurogenetic syndromes, and how these profiles are related to outcomes. At UCSF, Dr. Bishop’s lab is focused on identifying and refining dimensional measures of ASD-related behavior that can be used to understand similarities and differences within and between individuals with ASD and other developmental disorders, taking into account individual factors such as age, sex, IQ, and language level. She is interested in developing new tools that can be used in both clinical and research settings to assess profiles of social-communicative and other behavioral strengths and challenges across development in varied clinical populations, including ASD.
Ryan Adams, PhD is an Assistant Profes
sor in the Division of Developmental and Behavioral Pediatrics at Cincinnati Children’s Hospital Medical Center. For over 20 years, Dr. Adams’s research has focused on understanding the impact of peer relationships of adolescents and young adults on the lives of individuals who are at risk for negative peer experiences, such as individuals on the autism spectrum. Very little is known about the daily lives of this group, what experiences they enjoy, what experiences are problematic to them, and how all these experiences impact their well-being. In this respect, Dr. Adams strives to understand the day to day lives of individuals on the autism spectrum and how both positive and negative experiences in their daily lives academic, vocational, and psychological outcomes. Dr. Adams has experience building curriculua and interventions to address problematic interactions such as peer victimization. His free web-based curriculum, www.girlsguidetoendbullying.org and www.boysguidetoendbullying.org, have been implemented in schools and utilized directly by families to both address bullying when it is happens to an individual but also to help individuals take action to stop bullying when they see it happening to others.