Feature Issue on Loneliness and People with Intellectual, Developmental, and Other Disabilities
Loneliness, a Familiar Epidemic
A lot of people are feeling lonely, especially people with disabilities. Loneliness is a feeling people have when they don’t feel like they have as many friends and connections to their community as they want. It’s different from social isolation, which just means that someone has few social connections. People can feel lonely, or be socially isolated, or both. Researchers are studying loneliness in people with intellectual and/or developmental disabilities (IDD) because it has been shown to cause mental and physical illness. Even simply having a disability is a risk factor for loneliness, but people with IDD can learn ways to not feel lonely if they are supported. This matters more than ever because direct support professionals who are so important for supporting people with IDD to make friends and community connections are very hard to find because of the low pay in the field and other reasons. Losing more DSPs and other supports and services would make the problem of loneliness even worse.
When U.S. Surgeon General Vivek Murthy declared a loneliness epidemic in 2023, his report unleashed a global focus on the public health risks of social isolation and helped to de-stigmatize loneliness.
People with intellectual, developmental, and other disabilities and those who support them could be forgiven for saying they’ve heard this story before. Only, it cuts much deeper in a population that has experienced social isolation for centuries. Since the days of institutionalization and continuing to today’s ongoing advocacy for school and community inclusion, many people with intellectual and/or developmental disabilities (IDD) have experienced devastating loneliness and isolation. The worsening shortage in direct support professional staffing and potential funding shortfalls in disability services that make community living possible pose even more serious threats to the wellbeing of people with disabilities.
With the topic of loneliness still so prominent in the national, even global, conversation, we have a critical opportunity to address the importance of social connections that both include and go beyond disability.
What is Loneliness?
Loneliness is a distressing emotional experience that happens when someone feels isolated or believes their social relationships are not enough, either in number or quality—when there is a difference between a person’s actual experience and what they want or expect. The experience of loneliness is different for everyone. Loneliness depends on a person’s view that they lack social connections, no matter the number or quality of relationships they have already.
Social isolation refers to having few social relationships, social roles, group memberships, and social interactions. People can feel lonely, be socially isolated, or both. Though social isolation can lead to loneliness, loneliness can also lead to social isolation. There are times when someone can feel alone when they are surrounded by people. For example, someone may be around others in a day program or large residential setting but still feel lonely if they lack meaningful social connections. People can experience different amounts of loneliness over time depending on changes in their personal situations or where they live. According to a 2023 article by Hillary Schiltz and colleagues in Autism (https://doi.org/10.1177/13623613231217337), the types of relationships connected to loneliness change at different ages. When talking about loneliness, people with disabilities talk more about friends than family. This may be because friendships are a choice and involve more equal relationships. Adults talk more about romantic relationships.
Importance for Adults with IDD
Adults with IDD experience loneliness more than adults without IDD. In a 2023 BMC Public Health article (https://doi.org/10.1186/s12889-023-17481-y), Eric Emerson and colleagues reported that adults with disabilities in the United Kingdom experienced considerably higher loneliness. About 24% experienced substantial loneliness, compared with 7% of adults without disabilities. They were also more likely to stay lonely over time. About 46% experienced long-lasting loneliness, compared with 22% of adults without disabilities. Long-lasting loneliness is connected to poorer health outcomes than short-lived loneliness.
Though the general reasons why adults with IDD feel lonely are similar to other adults, there may be additional reasons that are specific to disability. Adults with IDD may experience limited or reduced social opportunities due to negative social views about disability in the community, low expectations about people with IDD, and lack of needed communication or other supports. When someone has few social opportunities and connections, they are vulnerable to experiencing loneliness and/or social isolation.
It is important to focus on the loneliness of adults with IDD. Loneliness is related to poor mental and physical health and wellbeing. It is a difficult experience that causes people to suffer, which is greater for adults with IDD who have long-lasting loneliness. The connection between loneliness and mental health challenges is stronger for adults with disabilities than others. In adults with autism, loneliness predicted depression, and greater loneliness was related to thoughts of suicide, according to a 2018 Depression and Anxiety article by Darren Hedley and colleagues. (https://doi.org/10.1002/da.22759).
Factors that Increase Loneliness in Adults with IDD
There are a number of factors that increase the loneliness felt by adults with IDD. These include spending a lot of time alone, not living with a partner, having limited contact with family and friends, not working, and not having access to resources.
Disability, especially intellectual disability (ID), significantly increases experiences of loneliness.
Living arrangements can affect the degree of loneliness experienced by people with IDD. A 2009 study of loneliness in adults with IDD by Roger Stancliffe and colleagues, published in Intellectual and Developmental Disabilities (https://doi.org/10.1352/1934-9556-47.2.63), found that living with family, having few roommates, and choosing their roommates was significantly connected with less loneliness. They had greater loneliness when they lived in places with seven or more roommates. In a 2023 article for the same publication, (https://doi.org/10.1111/jar.13103) they shared results of a study of adults with IDD who were previously institutionalized. Those adults frequently experienced loneliness, but the ones who had more contact with their families and friends were less lonely than those who lived in congregate housing, whose social connections were mostly with disability service personnel.
Loneliness is also connected to barriers in the environment. A study discussed in Disability & Society in 2018 (https://doi.org/10.1080/09687599.2018.1476224) found that 74% of people with disabilities who experience loneliness also experience structural barriers in the community. Reducing the structural barriers would allow people with disabilities to more easily participate in their communities. This is especially important because 71% of adults with disabilities wanted more social contact in their communities.
Exclusion and discrimination in the community leads to increased loneliness. Adults with ID felt lonely because they were excluded, overlooked, and disrespected, according to a 2023 study in the Journal of Intellectual & Developmental Disability (https://doi.org/10.3109/13668250.2022.2112510). People did not value or listen to them. They felt lonelier when they were “laughed at, bullied, ignored, overlooked, put down, and treated as less valued than others.”
Preventing and Reducing Loneliness
Adults with IDD can learn new skills, strategies, and attitudes to decrease their loneliness. Their own attitudes and resilience can help lessen their feeling of loneliness. The same strategies that work for people without disabilities may be useful, including increasing social support and offering social skills and cognitive behavioral training.
Preventing and reducing loneliness in adults with IDD will require support from others such as family, friends, community members, and disability services. These people may support participation in activities and facilitate relationships. Person-centered support is important to assist adults with IDD to make and keep social relationships. An asset-based approach is also useful to identify strategies to prevent loneliness. The strengths of adults with IDD are used to increase participation and meaningful interactions. People who support adults with IDD also need to consider major life events such as employment, retirement, moving to a new location, and losing a loved one. These events can affect their relationships and participation in activities.
Social Inclusion and Belonging
Social inclusion and belonging help prevent or reduce the loneliness of adults with IDD. Social inclusion is the interaction between interpersonal relationships, community participation, and social roles. Community participation provides opportunities to develop relationships and take on social roles. With this, adults with IDD become valued community members and gain a sense of belonging.
Participation in a group or activity may decrease the loneliness of adults with IDD. When they participate, they have purpose and engage in meaningful interactions. For example, Robinson and Idle explained that participating in a self-advocacy group gave adults with ID purpose. When they worked towards their shared goals, they had meaningful interactions with people with and without disabilities. Friendships were made through their participation. When adults with IDD have limited opportunities outside the home or disability services, they have smaller social networks.
Having satisfying relationships helps to prevent or decrease loneliness. Meaningful interactions are important in protecting against loneliness. They happen with people the person values and has common interests or goals. The interactions are positive and deeper than surface level. Robinson and Idle learned from adults with ID that friendships grow over time, help them feel secure, and give them a sense of belonging. Sometimes, they needed ongoing support to keep friends. Being in a committed relationship put an end to their loneliness.
Technology may assist adults with IDD to participate in some activities and to make and keep social connections. During the COVID-19 pandemic, Chadwick and colleagues learned that technology (e.g., videoconferencing, messaging apps, and social media) supported adults with ID to participate in meaningful activities, work, perform social roles, and continue social contacts. The contact they had with friends and family reduced the feelings of isolation and loneliness they felt during the pandemic. Though this use of technology decreased their loneliness, it was still not the same as in-person social contact.
It is also possible to experience social inclusion through brief interactions, or encounters, with people in the community. Encounters may include saying hello to a neighbor, chatting with a waiter, greeting church members, or complimenting someone’s pet. These encounters are opportunities for adults with IDD to be recognized and known by others, and they may lead to new relationships and feelings of belonging. Encounters are not only important for adults with IDD but also community members. Community members become more comfortable and skilled in interacting with adults with ID when they had practice through multiple encounters. To ensure positive encounters, it is often important for family, friends, or staff to facilitate early interactions.
Another strategy to decrease loneliness is to reduce physical and social barriers in the community. The physical environment may need to be adapted to improve access to community services and social spaces. This would include information in simple language and clear signs to provide direction. Robinson and Idle said that it was important to have “disability ready” places to support participation and ease loneliness. Having accessible places is not enough though. Adults with IDD said that when they were in places that seemed to be accessible, they were still socially excluded and lonely. They need to be welcomed and supported to make friends, have social roles, and belong.
Why This Matters
Being socially connected to others and to experience belonging is important. More people than ever feel lonely, which can have negative physical and health outcomes. The direct support workforce crisis has reduced social opportunities in the community. The loss of funding and programs for people with IDD currently being discussed would make it even more difficult for people with IDD to interact with others in their communities.
Social inclusion and belonging should be a priority for all adults with IDD. Ongoing efforts to increase school and community inclusion will help increase social opportunities. Families, friends, and service providers should ask people with IDD how they feel about the quantity and quality of their social opportunities with others. Unfortunately, the loneliness epidemic is not new for adults with IDD and their families. Hopefully, the increased focus on loneliness and social isolation will result in stronger social interactions and relationships for all.