A longitudinal study of loneliness in autism and other neurodevelopmental

Hillary Schiltz , Dena Gohari, Jamie Park and Catherine Lord.

Many autistic people and people with non-spectrum neurodevelopmental disabilities (e.g. intellectual disability) report feeling lonely, which can negatively impact their well-being. There is little longitudinal research, however, tracking changes

in how autistic people experience, conceptualize, and cope with loneliness throughout their lives. A longitudinal sample of 114 people, which included autistic participants and participants with neurodevelopmental disabilities, characterized experiences of loneliness, perceptions of other people’s loneliness, and strategies used to cope with loneliness from childhood to adulthood. Level of loneliness and coping strategies were coded from Autism Diagnostic Observation Schedule Modules 3 and 4 protocol forms. Autism Diagnostic Observation Schedule Loneliness Ratings were correlated across time and increased from adolescence to young adulthood. The most common loneliness coping strategies were Behavioral Distraction (e.g. watching TV) and Instrumental Action (e.g. seeking social contact), which were both used by more people in adulthood than childhood. Those who used Behavioral Distraction and a greater number of coping strategies had higher Autism Diagnostic Observation Schedule Loneliness–Self Ratings (i.e. were lonelier) during adolescence and adulthood. Findings highlight adulthood as a particularly vulnerable time for loneliness and indicate a need for more support and social opportunities for autistic adults and adults with neurodevelopmental disabilities who wish to make more social connections.

Lay abstract

We know that many autistic people feel lonely, but we don’t know whether their loneliness changes over time. Our research study followed autistic people and people with other non-spectrum neurodevelopmental disabilities from childhood through young adulthood and asked them about their loneliness. While many people told us they felt lonely or very lonely, a sizable group also told us that they do not feel lonely. We found that people who reported feeling lonely earlier in life were likely to also report feeling lonely later in life. Overall, autistic people and people with other neurodevelopmental disabilities in our study became lonelier from adolescence to adulthood. People described multiple ways they cope with feeling lonely, such as distracting themselves or reaching out to connect with another person. People who used distraction tended to be lonelier than those who did not. Our findings tell us that there is a need for greater support of social connections for many autistic people as they become adults.

摘要  许多自闭症患者和患有非谱系神经发育障碍(如智力障碍)的人报告说感到孤独，这可能会对他们的幸福感产生负面影响。然而，很少有纵向研究跟踪自闭症患者在一生中如何体验、概念化和应对孤独的变化。一项114人的纵向样本，包括自闭症参与者和有神经发育障碍的参与者，描述了孤独的经历，对其他人孤独的感知，以及从童年到成年应对孤独的策略。孤独感水平和应对策略由自闭症诊断观察量表3和4协议表编码。孤独症诊断观察表孤独感评分随时间变化呈正相关，且从青春期到成年期呈递增趋势。最常见的孤独应对策略是行为分心(例如看电视)和工具性行动(例如寻求社交)，这两种策略在成年后使用的人数都多于儿童时期。在青春期和成年期，使用行为分心和较多应对策略的自闭症诊断观察表孤独自评(即更孤独)较高。研究结果突出表明，成年是孤独的特别脆弱的时期，并表明希望建立更多社会关系的自闭症成年人和患有神经发育障碍的成年人需要更多的支持和社交机会。

我们知道许多自闭症患者感到孤独，但我们不知道他们的孤独是否会随着时间的推移而改变。我们的研究跟踪了自闭症患者和患有其他非谱系神经发育障碍的人，从童年到成年，询问他们的孤独感。虽然许多人告诉我们他们感到孤独或非常孤独，但也有相当一部分人告诉我们他们不感到孤独。我们发现，那些在生活早期感到孤独的人很可能在以后的生活中也会感到孤独。总体而言，在我们的研究中，自闭症患者和其他神经发育障碍患者从青春期到成年期变得更加孤独。人们描述了多种应对孤独感的方法，比如分散自己的注意力，或者伸手与另一个人联系。使用分心技术的人往往比不使用分心技术的人更孤独。我们的发现告诉我们，随着许多自闭症患者成年，他们需要更多的社会关系支持。