A sense of being connected to other autistic people has been reported anecdotally. Friendships and connectedness may be important to autistic people and beneficial for their wellbeing. Our research aimed to understand the autistic community by interviewing 20 autistic people about their experiences of being connected to other autistic people. Participants were interviewed in person, over video, using a text-based software to type or over email. Participants detailed three parts of autistic community connectedness: a sense of belonging, social connection with autistic friends and political connectedness. The friendships autistic people had with one another were deemed to be very important to participants because it gave them confidence, provided companionship and made them happy. Some participants did not experience connectedness to the autistic community. These participants also found autism to be less important to their identity and had fewer positive feelings about being autistic. This research is important as it raises awareness that community connectedness is viewed as important to this group. It is possible that community connectedness may help protect the mental health of autistic people when they face stigma or negative life experiences in society.
Types of Connection
Our analysis of participants’ lived experiences indicated that autistic community connectedness consisted of three different subdomains of community – belongingness, social connectedness and political connectedness. Each domain provided something unique to the overarching construct of autistic community connectedness in participants’ lives. Belongingness related to a feeling of seeing oneself in someone else. Social connectedness consisted of the specific friendships and social capital. Finally, political connectedness was a goal-orientated domain of acquiring rights and provision for themselves and other autistic people.
Benefits of Connection
Benefits of autistic community were many and varied, according to the type of connection. Although the subdomains were distinct, taken together, these subdomains gave purpose and joy to autistic people, and ended a social isolation they experienced in neurotypical communities:
I was very isolated and then I met autistic people. (May, 35, white British, female, diagnosed)
The benefits of belongingness and social connectedness included learning about oneself, offering and receiving advice, making connections and friends, and having a ‘home’. The space among autistic people was presented as safe, validating and supportive:
I think, knowledge of where am I and the [community] are so helping me understand myself more. And it’s helping me be more forgiving of my weaknesses. (Emma, 40, white, female, seeking diagnosis)
Political connectedness gave individuals a sense of purpose and a feeling of control; furthermore, it gave them a network of individuals who were fighting for similar goals:
It gave me a social network and a cause to work towards . . . It gives me a sense of belonging and of fulfilment because I feel I am contributing towards improving the quality of the lives of many fellow autistics. (Abi, 47, Isreali, male, diagnosed)
The Five Elements of Community
The accounts given by participants of autistic community connectedness demonstrate the five elements sense of community: membership, influence, reinforcement, shared emotional connection and conscious identification (McMillan, 1996; Obst et al., 2002).
Individuals exist at the heart of complex ecological systems and communities which may include peers, family or geographical communities (Bronfenbrenner, 1996). While ‘community’ used to be described in a restricted sense to describe only geographic locations, definitions have expanded it more broadly as a shared form of identity, not limited by proximity (Douglas, 2010; Slack, 1998). Thus, a community becomes united through a collective identity and a shared psychological space (Deaux, 1996; Douglas, 2010). A shared psychological space can be described as sharing an identity, values or as an emotional cohesion that unites people (Douglas, 2010). This reflects the cognitive and affective components of community; emotional bonds or ideological solidarity (Frost & Meyer, 2012). There are five elements to a sense of community – membership (feeling of relatedness), influence (the ability to make a difference), reinforcement (needs fulfilment), shared emotional connection (Chavis et al., 1986) and conscious identification (Obst et al., 2002).
Accessible Connection
The predominant ‘space’ where social connectedness occurred was the Internet, which facilitated connections regardless of geography, and removed constraints of social community (eye contact, body language and speaking). Accessibility was frequently mentioned as environments are rarely designed with neurodivergent people in mind, making them overwhelming, confusing or stressful. Community events (offline) were also mentioned though. Participants looked for autistic-run events
In social connectedness, accessibility was key, whereby autistic made spaces that were more welcoming. This is also supported in wider literature about what an ‘autistic space’ is: Buckle (2020) describes ‘events for autistic people that are organised by neurotypicals can be autistic-friendly, but they will never be truly autistic spaces’ (p. 118). Participants described how going to autistic-led events meant a degree of certainty that space will be for them. Architecture and space are not designed with autistic individuals in mind (Toronyi, 2019). Participants described a relatedness with environments that suited their needs and allowed them to cultivate relationships.
