‘A way to be me’: Autobiographical reflections of autistic adults diagnosed in mid-to-late adulthood

In this article, we report on an oral history study documenting the lives of autistic adults in Australia. This qualitative study, co-produced with autistic researchers, offers insight into the lived experiences of autistic adults diagnosed in mid-to-late adulthood. Oral history methodology was utilised to understand the experiences of autistic adults who grew up in an era before autism was well-known. The 26 interviewees were born before 1975, receiving a clinical autism diagnosis after age 35 years. All interviews were conducted by autistic researchers, transcribed and thematically analysed by a team of autistic and non-autistic researchers using the six-step process outlined by Braun and Clarke. We identified four themes relating to perceptions of the self: being different, exploring identity, the suffering self and being Autistic. Some interviewees reported a direct relationship between trauma, negative self-conceptions and suffering. For most, formal diagnosis had positive impacts on sense of self, contributing to a greater focus on strengths. Contra research suggesting autistic impairments in self-awareness, these interviewees demonstrated a deep capacity for self-reflection, highlighting the variability of autistic lives and the socio-historical contexts that shape individual biographies, including experiences of stigma and discrimination as well as the empowering potential of identifying as autistic. Lay abstract Using oral history methods, we interviewed and recorded 26 autistic adults in Australia about their life history. We wanted to better understand interviewees’ self-reflections about their lives. The interviewers were autistic researchers and the interviews were analysed by autistic and non-autistic researchers. All of the adults we interviewed were born before 1975 and formally identified as autistic after age 35 years. This group of people is sometimes referred to as ‘late-diagnosed autistic adults’. In general, there is not much research done about autistic adults and even less is known about those diagnosed late in life. In this article, we explore what these adults said about their sense of self and how that changed over time. These autistic adults told us about many negative experiences, including trauma, which had shaped how they think about themselves. For most, autism diagnosis had a very positive impact on their sense of self, allowing them to understand more about their own past and to feel good about their autistic identity. Previously some researchers have said that autistic people have a limited or impaired sense of self. Instead, our results show some autistic people can actually reflect deeply on their lives and their changing sense of self-identity over time.

“Just Ask Me”: The Importance of Respectful Relationships Within Schools

An inclusive approach to education requires schools and educators to address the support needs and individual predispositions of all students. Our research highlights the crucial importance of effective and respectful communication with autistic students to facilitate their successful participation in schools. This paper explores the experiences of 24 autistic individuals aged 16–67 years, through synchronous semi-structured interviews and written responses. The research team comprised both autistic and allistic (non-autistic) researchers, who worked together to design the overall project, collect interview data, and analyse the data. Relationships were frequently discussed by participants and the importance of positive relationships was positioned as key to successful participation within educational contexts. Particularly damaging were assumptions made by teachers concerning individual ability based on labels given. Participants recalled ongoing challenges with resisting stereotypes and managing stigma, while trying to craft a positive autistic identity and advocate for rightful supports for their education. At the core of these negotiations were positive relationships, and teachers who asked participants what their needs were, and then listened and proactively responded to their answers. Recommendations for more positive schooling engagements with autistic young people are provided.

Supporting Autistic Culture in Defining Autistic Identity

Late diagnosed Autistic adults who are also practicing artists are very likely to have clues about their identities expressed in their work. This gives them the opportunity to reevaluate their meaning through a more accurate lens and proper context. It also challenges viewers and audiences to do the same and to confront misconceptions. These biases are likely to extend across all forms of cultural production. This leaves Autistic and disabled artists with a very small and unrecognized footprint in our current cultural landscape. This needs to be rectified by rejecting outmoded stereotypes and establishing committed programs of engagement with Autistic culture by our public institutions.

Understanding Camouflaging as a Response to Autism-Related Stigma: A Social Identity Theory Approach

Camouflaging refers to strategies used by autistic people to mask or hide social difficulties. The current study draws on Social Identity Theory to examine the relationship between camouflaging and autism-related stigma, testing the hypothesis that camouflaging represents an individualistic strategy in response to stigma. Two hundred and twenty-three autistic adults completed an online survey measuring perceived autism-related stigma, individualistic and collective strategies, camouflaging and mental wellbeing. Results indicated that higher camouflaging was positively associated with autism-related stigma and both individualistic and collective strategy use. Autism-related stigma was associated with lower wellbeing however this relationship was not mediated by camouflaging. These findings demonstrate how stigma contributes to camouflaging and highlight the complexities of navigating autistic identity while still camouflaging.

“Recalling hidden harms”: autistic experiences of childhood applied behavioural analysis (ABA)

Purpose This paper aims to investigate the long-term impacts autistic adults experienced from childhood participation in the applied behavioural analysis (ABA). Design/methodology/approach Possible participants were recruited through advertisements on social media and autism and ABA organisations. Possible participants were given the choice between an online or face-to-face interview or an anonymised online questionnaire. Findings Reflections from 10 participants were indicative of a predominantly detrimental impact of ABA. Reflections gave rise to a core theme “recalling hidden harms of childhood experiences of ABA”. Outcomes are discussed in relation to the impact on autistic identity, current research and progressing understanding of the impacts of early intervention from the autistic perspective. Research limitations/implications The practical implications of ABA are discussed alongside recommendations for future practice and research with the involvement of autistic individuals within interventive processes. Originality/value This is the first paper to take an in-depth, qualitative approach to autistic experiences of ABA. The findings themselves are driven to conceptualise and give voice to the core impacts which carried through participants’ exploration and understanding of self.

How is autistic identity in adolescence influenced by parental disclosure decisions and perceptions of autism?

A large body of literature examines parental interpretations of their child’s autism diagnosis. However, research examining intersections between parental disclosure of their child’s autism diagnosis to their child and their child’s identity development is lacking. The primary aim of this study was to analyze if parental decisions to disclose/withhold their child’s autism diagnosis influence adolescents’ perceptions of autism and identity development. Adolescent participants ( n = 19) and their mothers, recruited from an informal educational program, completed in-person interviews and online questionnaires, respectively. Adolescents were told about their autism diagnosis in varying ways. Adolescents whose parents voluntarily disclosed their autism diagnosis to them described autism and themselves more positively than adolescents who did not experience voluntary disclosure. Although parents and teens showed similarities on a group level when defining autism, parents and children expressed diverse themes in their definitions of autism. Findings suggest that parents can help their children develop neurodiversity-aligned perspectives about autism by mindfully discussing autism with them early in their development. Lay abstract There is a lot of research about how parents think about their child’s autism but we don’t know much about how parents talk with their kids about autism. How parents talk with their kids about autism may shape how kids see autism. A team of autistic and non-autistic people (including a mother of an autistic person) did a study. We wanted to know if how parents talk with their kids about autism shapes how their kids see autism. Nineteen teens from a summer camp did interviews and surveys. Their mothers did surveys. Teens learned about if they had autism in different ways. Some teens still didn’t know they were autistic. Teens whose moms chose to tell them about their autism talked about autism and themselves more positively than teens whose moms didn’t choose to talk with them about autism. Only teens whose moms chose to talk with them about autism described themselves as having social strengths. Teens had a harder time defining autism than moms. However, teens and moms talked about autism in similar ways. Our study shows that parents can help their kids see autism and themselves more positively by talking with their kids about autism early in development.