New Lord Lab Study to Explore Social Connectedness and Well-being Among Caregivers of Adults with Autism and Developmental Disorders

Fall 2023

By: Abigail Dickinson, PhD

We are excited to announce a five-year study focused on the family caregivers of individuals with autism and developmental disorders. Funded by the National Institute on Aging and led by Dr. Catherine Lord, this initiative builds upon Dr. Lord's ongoing study tracking individuals initially identified based on developmental concerns during their toddler years. Now in their mid-30s, these adults continue contributing important insights as one of the longest-running longitudinal studies of individuals with ASD.

However, this new study will shift the focus toward their families, aiming to identify specific factors that influence the well-being of lifetime family caregivers. Joining forces with Dr. Lord are UCLA Center for Autism Research and Treatment (CART) junior faculty, Dr. Abigail Dickinson, Assistant Research Scientist of UCLA CART, and Dr. Judith Carroll, Director of the Aging Biology and Behavior Laboratory at UCLA. Along with expert collaborators Dr. Marsha Malick (University of Wisconsin-Madison), Dr. Toni Antonucci (University of Michigan), and Dr. Andrew Pickles (Kings College London), the research team will take a comprehensive approach combining innovative methodologies across developmental science and aging biology.

Dr. Lord's study aims to improve our understanding of the factors that affect the health and happiness of those who care for family members with autism and developmental disorders. We are particularly interested in how caregivers' social circles and relationships evolve and how these shifts impact their mental and overall well-being. The research team will employ a 'social convoy model' to pinpoint patterns that might either increase vulnerability or lessen the stress experienced by caregivers.

The team will also examine broader factors, including life transitions and stress, mental health, young adult behavior patterns, and physical health, using questionnaires, digital diary entries, face-to-face interviews, and novel techniques to measure physical and cognitive aging, such as evaluating biological age based on DNA methylation patterns. By implementing these measures over five years, Dr. Lord hopes to identify key factors that promote resilience and reduce caregiver burden, ultimately guiding practical strategies to foster well-being and mental health in family caregivers as they age.

This study comes at a time when social isolation and loneliness are emerging as significant public health concerns, with the US Surgeon General recently raising the alarm on an 'epidemic of loneliness.' Caregivers face unique challenges that can drastically impact their social dynamics and contribute to feelings of loneliness and isolation, including increased stress levels, less time for self-care and personal relationships, and societal stigma. This project will provide an important bridge between our broader understanding of social isolation and loneliness and the specific, often overlooked, experiences of caregivers for individuals with ASD.

By identifying the supportive elements and factors contributing to caregivers' well-being, the anticipated findings from this research could help inform interventions to foster caregiver resilience, alleviate caregiver burden, and promote their mental health and well-being. As the study unfolds over the next five years, Dr. Lord's team hopes to bring much-needed attention and insights to the unique experiences of caregivers, ultimately providing practical strategies to support individuals with autism and their families.

Short summary for internal: The Lord Lab is launching a five-year study to understand the factors affecting the well-being of caregivers of adults with autism and developmental disorders. This project will expand on Dr. Catherine Lord's ongoing longitudinal research on individuals with ASD but will shift the focus toward their families. Collaborating with Dr. Abigail Dickinson and Dr. Judith Carroll, the research team will examine caregivers' social relationships, life transitions, mental and physical health, and the impact of these factors on overall well-being. They will use a 'social convoy model' to identify patterns that could influence the caregivers' stress levels and vulnerability. Data collection will involve questionnaires, digital diaries, interviews, and biological age measurements using DNA methylation patterns. The aim is to identify ways to promote resilience and reduce caregiver burden, informing interventions to enhance their mental health and overall well-being. This research will provide valuable insights into caregivers' unique experiences and challenges, particularly in the context of social isolation and loneliness.