Loneliness in Adults on the Autism Spectrum

Abstract

Abstract

Background:

Loneliness is associated with adverse psychological and physical outcomes. However, little is known about the factors contributing to loneliness in autistic adults. This study aimed to quantitatively compare levels and predictors of loneliness in autistic and nonautistic adults, and then contextualize these findings by thematically analyzing responses to open-ended questions on autistic adults' socialization experiences.

Methods:

We obtained data from the Cooperative Research Centre for Living with Autism (Autism CRC) Australian Longitudinal Study of Adults with Autism (ALSAA). The sample comprised 220 autistic adults (age mean [M] = 41.9 years, standard deviation [SD] = 12.24) and 146 nonautistic adults (age M = 43.7 years, SD = 13.49). We measured loneliness with the University of California, Los Angeles (UCLA) loneliness scale (ULS-8). We compared the findings between these two groups of adults. Through regression models, we investigated associations between loneliness and demographics, autistic traits, social support, depression, anxiety, and self-efficacy. We adapted these determinants from De Jong-Gierveld's model of loneliness. In addition, we conducted an inductive thematic analysis of autistic participants' open-ended responses about their socialization. We used an inclusive approach utilizing an advisory panel of autistic adults in study design and interpretations.

Results:

Autistic adults scored significantly higher on the ULS-8 than nonautistic adults (p < 0.001). The presence of autism contributed the greatest variance in the loneliness score (B = 8.11, 95% confidence interval [6.98–9.23], p < 0.001, R² = 0.38). The autism quotient subdomains of social skills and dissatisfaction with social support were associated with greater loneliness in both autistic and nonautistic groups (p < 0.05). The thematic analysis contextualized the interpretation of quantitative findings, specifically regarding perceived loneliness and difficulties with social interaction. Satisfaction and perceptions of socialization were widely variable and both of which were shaped by experiences. Environmental factors, noise in particular, as well as social communication difficulties and past negative experiences seemed to be the barriers to socialization.

Conclusions:

Autistic adults have reported higher levels of loneliness. Variables associated with loneliness in both groups were dissatisfaction with social support and the autism quotient subdomain of social skills. The subjectivity of perceived loneliness, views about socialization, and their implications for social support in autistic adults warrant further study.

Lay summary

Why was this study done?

Loneliness is a negative feeling of not having intimacy and desired relationships. Loneliness is related to depression, anxiety, and even cardiovascular risk among other negative impacts. Little is known about loneliness in autistic adults. No research has been done on this topic that used a validated questionnaire and a community comparison group.

What was the purpose of this study?

To understand what was associated with loneliness in autistic adults compared with nonautistic adults. We also wanted to understand the experience of loneliness for autistic adults.

What did the researchers do?

We used data from the Australian Longitudinal Study of Adults with Autism (ALSAA). The ALSAA study gathers questionnaires from both autistic (n = 252) and nonautistic adults (n = 146) aged 25+ years (mean [M] = 42.6, standard deviation [SD] = 12.8) from across Australia. We used various questionnaires from the ALSAA to look at factors related to loneliness. We also looked at the comments autistic adults made about the way they socialize.

What were the results of the study?

Autistic adults are often lonelier than nonautistic adults. Loneliness for both autistic and nonautistic adults was related to social skills and dissatisfaction with social support. However, autistic adults told us that there is a difference between loneliness and being alone, so we have to be careful when interpreting our questionnaire data. Autistic adults also told us there are many barriers to socializing, for example, noisy environments or a culture of drinking alcohol. They told us that socializing with nonautistic adults can be exhausting, challenging, or anxiety provoking. Some said that socializing was unnecessary. Some were bullied that gave them a negative impression of socializing. Some autistic adults said that a quiet setting, sport, or recreation activities can support them to socialize more.

What do these findings add to what was already known?

These findings help us understand loneliness for autistic adults better, but more research needs to be done. We confirmed autistic adults are often lonelier.

What are potential weaknesses in the study?

Participants in the ALSAA study were self-selected rather than sampled randomly. This could mean that the nonautistic participants may have more interest in autism than the general population. Because participants needed to be able to read and understand the survey, autistic participants do not represent the full range of people on the autism spectrum and people with intellectual disability may be excluded. We do not have longitudinal data, that is, data from more than one point in time, so we cannot be sure of what causes loneliness. We only used a short version of the loneliness questionnaire. We did not ask the autistic adults enough questions about their experiences of loneliness. Soon the ALSAA study will have data from more than one point in time, and data using the long version of the loneliness questionnaire.

How will these findings help autistic adults now or in the future?

These findings show that loneliness is more frequent for autistic adults. These findings suggest that maybe strategies to help with loneliness for nonautistic adults could help some autistic adults. As we start to understand loneliness and aloneness in autistic adults better, we can do a better job designing strategies to help people be less lonely.