RESUMO
Background: Autistic adults appear to be more vulnerable to mental ill health, with loneliness being a variable associated with multiple outcomes of poorer well-being. However, a description of meaningful social connection that is suitable for autistic adults is missing from this research, along with a missing understanding of the conditions that contribute to well-being. Methods: In this study, autistic adults' experiences of connectedness and aloneness were systematically searched for within data collected from blogs. This contributed a creative method to hear the viewpoint of autistic adults. Corpus-based and thematic analyses explored the descriptions and contexts of relationships. A total of 16 autistic authors contributed views. Results: Social connection was desired and was achieved through self-acceptance and rejecting deficit-based views of being autistic, and selectively choosing important relationships. Meaningful social connection changed over time, being more difficult to attain in childhood, and benefiting from self-learning and effortfully applying neuro-normative skills in social communication. Loneliness was only described alongside other causes of unhappiness and was not associated with being autistic. Conclusions: The findings offer some explanation for the high estimates of both loneliness and mental ill health for autistic adults. We consider the implications for autistic individuals, clinicians, educators, and researchers. We are also cautious not to imply that these views reflect all autistic people. The findings suggest that improvements are needed in society to share communication differences and relationship expectations for autistic individuals to be accepted and valued.
Why is this an important issue?: Autistic adults appear to be vulnerable to mental ill health, though this is often misunderstood. Being lonely, or dissatisfied with social relationships, has been linked to poorer well-being. However, most research uses questionnaires to assess loneliness, which make assumptions that need updating for autistic adults. For example, having fewer friends does not necessarily mean feeling lonely. We are also missing an understanding of what contexts make autistic people feel alone or connected. What was the purpose of this study?: The purpose of this study was to hear the experiences of aloneness and social connectedness as described personally by autistic adults. We chose to use data from online blogs, because the topics and descriptions were chosen through personal motivation of the authors and minimize assumptions made by researchers. What did the researchers do?: We created a dataset of descriptions of social connectedness from the top trending blogs written by autistic authors. We used systematic search methods to do this. We chose 33 search terms that describe social connection and aloneness, as not to presume that autistic people are lonely, such as "friendships" and "belonging." We analyzed the descriptions first using a computer program to find patterns in language, including the most frequent descriptions. This is called corpus-based analysis. It was chosen to reduce the bias that researchers can introduce when they look for themes in what people talk about. Second, we used a method called thematic analysis to explore the shared meanings in the descriptions, which helped us to understand the contexts of relationships. We collected views from 16 autistic authors. What were the results of the study?: The results showed that the blog authors desired social connection and had meaningful relationships. This was achieved through self-acceptance and self-compassion. Authors said that they learned about themselves over time. They learnt social skills that they thought were expected by non-autistic peers. They also rejected the view that being autistic was a negative thing. Loneliness was described only when people had other things making them unhappy, such as anxiety or depression, and was not associated with being autistic more generally. What do these findings add to what was already known?: Unhappiness with social relationships seems to occur in certain circumstances, which change over time. Importantly, these autistic authors said they felt connected when they had a positive identity, were understood by the people important to them, and were able to make choices about how to invest in relationships. What are potential weaknesses in the study?: We only heard from a small sample of autistic people, likely those with good internet skills who were interested in social media. This might be a group of people who are motivated to connect with other people. Also, we could not follow up on the meanings of what was written because we had no interaction with participants. How will these findings help autistic adults now or in the future?: Within health care, there seems to be a risk of misunderstanding autistic clients when practitioners use questionnaires to assess well-being or loneliness, when the questionnaires are not created for autistic people. We recommend not assuming loneliness, but instead, asking whether feeling lonely occurs under certain circumstances. There is more for clinicians and researchers and society to do to share the responsibility for social communication differences.
