Project Description:
Social isolation and loneliness have been identified as public health concerns (Holt-Lunstad, 2017; Holt-Lunstad et al., 2017; Leigh-Hunt et al., 2017). Experts have described a "loneliness epidemic" that is estimated to affect approximately one third of people in industrialized countries, with one in twelve people severely affected by loneliness (J. T. Cacioppo & Cacioppo, 2018; Jeste et al., 2020). In the general population, loneliness has been linked with a host of undesirable public health outcomes including mental health concerns (e.g., depression, suicidality, anxiety; Lee et al., 2021), poorer cognitive functioning (J. T. Cacioppo & Cacioppo, 2014), physical health issues (e.g., coronary heart disease, stroke, high blood pressure; Hawkley et al., 2010; Valtorta et al., 2016), sleep disturbance (J. T. Cacioppo et al., 2002), poorer quality of life (Gerino et al., 2017), and increased likelihood of mortality (Holt-Lunstad et al., 2015). While loneliness and lack of social connection is widespread, autistic adults are particularly at risk due to difficulties forming social relationships in a primarily neurotypical society (Schiltz et al., 2020). Given the high rates of mental health concerns (Hollocks et al., 2018), suicidality (Cassidy, 2020; Cassidy et al., 2014), and physical health conditions (Bishop-Fitzpatrick & Rubenstein, 2019; Croen et al., 2015) in autistic adults, accurately measuring and understanding loneliness – a potential key contributor to these difficulties – can have widespread implications.
Autistic adults are at high risk for loneliness (Ee et al., 2019) and its mental and physical health sequela (Baczewski & Kasari, 2021; Park et al., 2020; Schiltz et al., 2020). It has been posited that the social communication differences of autism may hinder the formation of social relationships in a neurotypical majority society, which may lead to feelings of loneliness and poorer well-being (Schiltz et al., 2020). Although loneliness may play a key role in well-being of autistic adults, this line of research is impeded by the lack of a validated measure of loneliness in this population (Umagami et al., 2022).
In order to gain a better understanding of predictors, consequences, and patterns of loneliness in autistic adults and evaluate treatment outcomes, psychometrically sound measurement of loneliness is an essential prerequisite. This study will produce the first validated and unbiased measure of loneliness for autistic adults that can be used in clinical trials targeting social connection as well as studies of physical and mental health outcomes in autism. This tool will help clinicians better serve autistic adults, and by extension, improve the day-to-day lives of autistic individuals and their families. Furthermore, it could also be used to evaluate outcomes of interventions aimed at fostering social connections. This work is particularly important in the context of the "loneliness epidemic" (Cacioppo & Cacioppo, 2018; Holt-Lunstad, 2017) that has been exacerbated in recent years by the COVID-19 pandemic (Dahlberg, 2021; Lee et al., 2020), particularly for autistic adults (Pellicano et al., 2021). Creation of a self-reported loneliness questionnaire for autistic adults could be used to inform assessment, prevention, and treatment efforts that could change the lives of many autistic adults.
