Autism in Adulthood

Neville, Florence; Sedgewick, Felicity; McClean, Stuart; White, Jo; Bray, Isabelle

doi: 10.1089/aut.2024.0148pmid: N/A

Background:Firsthand accounts by autistic people describe a need for regular time alone. However, there is little in the literature that explores (1) why time alone is desired, (2) how that time is spent, or (3) where that time is spent. This article describes a neurodiversity-informed, qualitative study that demonstrates the importance and purpose of “alone-time” for autistic adults.Methods:We interviewed 16 autistic adults living in the United Kingdom about how and where they spent their “alone-time” and the benefits experienced from this time. We conducted the interviews online, some using a video link, and some using a synchronously accessed text-based document, according to the participants’ preferences.Results:We used Reflexive Thematic Analysis with the interview data to generate four qualitative themes as follows: (1) reacting to social and sensory overwhelm; (2) retreating from social and sensory overwhelm; (3) regulating, recovering, and recharging; and (4) ready to reconnect with others.Conclusions:These themes highlight a need for balancing social activities and spaces with time and space alone and the benefits of creating or protecting spaces, which encourage recovery from overwhelm.Community BriefWhy is this an important issue?Autistic people often talk and write about how they need regular time alone for their well-being, but there is very little in the academic literature on the importance of “alone-time” or what “alone-time” might look like.What was the purpose of this study?We wanted to explore why autistic people might want time alone, how autistic people like to spend time alone, and where autistic people like to spend time alone.What did the researchers do?We interviewed 16 autistic adults living in the United Kingdom about how and where they spent their alone-time and what they felt the benefits of alone-time were. Then we analyzed what was said in the interviews using Reflexive Thematic Analysis.What were the results of the study?Four themes help describe what the autistic adults talked about: (1) reacting to social and sensory overwhelm; (2) retreating from social and sensory overwhelm; (3) regulating, recovering, and recharging; and (4) ready to reconnect with others. These themes highlight how social and sensory environments can be overwhelming, how finding quiet spaces and/or engaging with intense interests can be helpful, and how socializing can be made less overwhelming.What do these findings add to what was already known?This study is the first to explore why autistic people might choose to spend time away from social spaces, how they choose to spend this time, and where they choose to spend this time. The findings support previous research on sensory and social overwhelm and on well-being strategies that autistic people use to support their own well-being.What are potential weaknesses in the study?All the participants lived in the United Kingdom, had access to the internet, and were able to give informed consent, and most of the participants were White and female. We do not know if the findings are true for autistic people who are not represented by this sample (e.g., people who are further marginalized by not living independently).How will these findings help autistic adults now or in the future?This study shows the importance for autistic adults in balancing social activities and spending time in social spaces, with alone-time. It also shows the benefits of finding/creating and protecting spaces that are not overwhelming for autistic adults. These findings may help autistic adults explain their need for alone-time, which is useful information for people who support, live with, and work alongside autistic adults.

Wijekoon, Sachindri; Robison, John; Welch, Christie; Westphal, Alexander; Loftin, Rachel; Perry, Barbara; Rombos, Victoria; Picciolini, Christian; Bosyj, Catherine; Senman, Lili; Jachyra, Patrick; Baron-Cohen, Simon; Penner, Melanie

doi: 10.1089/aut.2023.0192pmid: N/A

Background:There have been sporadic and disturbing media accounts of autistic people engaging with extreme ideologies, with comparatively little systematic exploration of this suggested association. Existing research has failed to consider the contextual factors that could influence these rare occurrences of engagement with extreme ideologies. This study explores how autistic individuals involved in extreme ideologies describe personal and contextual factors affecting their participation.Methods:Twelve individuals from Canada and the United States who were either diagnosed or self-identified as autistic and have engaged with extreme ideologies participated in semistructured interviews. The research approach and analysis of the data were informed by interpretative phenomenological analysis. Our interdisciplinary team met regularly to collectively examine initial assumptions and interpretations, while maintaining a central focus on the perspectives of the participants.Results:We identified the following three key themes: (1) early wounds, (2) missed formative opportunities, and (3) finding a fit for neurodivergence. Traumatic experiences, disenfranchisement, learned hatred from an insular upbringing, and systemic failings in health and social service systems contributed to participants’ decisions to engage with extreme ideologies. Hate groups, in turn, filled the voids by providing acceptance, purpose, structure, sense of community, and by accommodating participants’ neurodivergent needs.Conclusion:Autism alone did not explain participants’ engagement with extreme ideologies. Trauma and disenfranchisement related to being neurodivergent were common factors that made hate groups more appealing. Proactive interventions to prevent engagement in extreme ideologies must champion inclusive environments that recognize autistic individuals’ skills and address underlying factors that contribute to their disenfranchisement.Community BriefWhat was the purpose of this study?The media has reported on high-profile cases of autistic people with extreme beliefs who acted in violent ways. There is a lack of research on this topic and researchers have not directly spoken with autistic people who have been involved with these extreme beliefs. Our goal was to understand why some autistic people engaged with hateful beliefs, asking them about both autism and their life circumstances.What did the researchers do?We interviewed 12 people who identified as autistic to understand why they became involved in extreme beliefs. We conducted the interviews by phone or using Zoom Health. We read the interview text, identified important statements, and then identified the ideas linking these statements.What were the results of the study?Most of the people in our study were young to middle-aged men with White/European background from Canada and the United States. Only a few had a formal autism diagnosis.Participants faced many challenges, including being neglected by parents, experiencing trauma, and not feeling like they belong. Many of them were not given opportunities to freely express themselves or have positive interactions with people from different backgrounds. Everyone lacked the opportunity to build a positive view of themselves and the world around them.Participants described some autistic and neurodivergent traits, such as having a focused interest in one topic, having difficulty understanding and connecting with others, preferring clear rules and a set routine, and having difficulty controlling emotions, were not accepted elsewhere but were accepted in groups with extreme beliefs.What do these findings add to what was known?Hate groups provided autistic people a supportive environment where their strengths were highlighted, their individuality was celebrated, and their challenges were accommodated. This level of support contrasted with what autistic people had previously experienced in society.What are potential weaknesses?One limitation of our study was that we included people who identify as autistic, but we did not verify their diagnosis through formal testing. Our sample is a small group of autistic people who had engaged with hateful beliefs; our findings do not apply to all autistic people and should not be interpreted that all autistic people are more likely to have extreme or hateful beliefs.How will these findings help autistic adults now or in the future?Engagement with extreme groups or beliefs is only one possible negative outcome from the lack of inclusion and acceptance of autistic people, but is an important one. We should create supportive environments that welcome and appreciate autistic peoples’ skills and interests to allow them to feel valued and connected to their community. Families, teachers, and professionals should prioritize accurate and timely diagnosis and provide supports that are tailored to their needs. These steps can help autistic people build meaningful relationships and prevent them from turning to extremist groups to meet their needs.