What's Next?!: Engaging Patients, Caregivers, and Stakeholders to Address Transitioning to Adulthood

Background: Recent estimates indicate 1 in 59 children are diagnosed with autism spectrum disorder (ASD). Each year in the United States, approximately 50,000 of these youth transition to adulthood.Given that ASD emerges in early childhood, research and interventions have largely focused on children with ASD and not older youth. Another concern is that youth with ASD often have complex medical and psychiatric comorbidities (e.g., seizures, anxiety, depression, sleep disturbances, gastrointestinal disorders) in addition to the core symptoms of ASD (e.g., impairments in social interaction, communication deficits, repetitive behaviors). Thus, it is not surprising to find that research suggests young adults with ASD have poorer transition outcomes compared to peers with other disabilities. Clearly, there is a knowledge gap regarding the complex transition needs of young adults with ASD.

Objectives: This study had two primary objectives. First, to form partnerships between patients, caregivers, and stakeholders to gain insight into the challenges encountered during the transition phase of ASD. Second, to develop comparative effectiveness research questions alongside patients, caregivers, and stakeholders to address these challenges.

Methods: A patient-centered outcomes research (PCOR) approach was used to form partnerships among adolescents and young adults with varying degrees of ASD severity ages 14-36, caregivers, clinicians, independent living facility directors, educators, directors of medical and adult ASD services, patient care coordinators, advocates, special needs lawyers, legislative experts, and researchers. Patients and stakeholders were divided into six groups and met within their respective communities over a 12-month timeframe. Groups were facilitated by patients, caregivers, and stakeholders. An Autism Advisory Board (AAB) consisting of patients, caregivers, and stakeholders met monthly to provide overarching guidance to the project. Field notes were collected from all meetings. Qualitative content analysis was used to evaluate recurrent themes.

Results: This study identified seven key areas of transition in ASD (e.g., healthcare, self-advocacy, independent living skills, safety, career/job, social/relationships, and education) that have not been adequately addressed in research from the patient and stakeholder viewpoint. Additionally, this study identified the presence of racial and gender differences in the transition phase that presented unique challenges and needs. Lastly, patients and stakeholders identified four comparative effectiveness research (CER) questions to address the seven key areas of transition. CER questions focused on delivery methods of interventions, mentor models, peer navigators, and transition readiness assessment tools.

Conclusions: The transition from childhood to adulthood represents a tumultuous time for most, but especially for young adults with ASD and their families. This project demonstrated that a PCOR approach provides a unique opportunity for patients and stakeholders to identify their needs and to shape future research that is responsive to their needs. The use of this approach was critical in creating a deeper understanding of the complex needs of transition-age young adults with ASD and informing meaningful ways to address these needs. Patients, caregivers, and stakeholders identified several gaps in research, care, and services for individuals with ASD transitioning to adulthood. New research is currently being conducted by the partnerships formed in this PCOR study to advance this critical foundation.