Oral History Study Explores What It’s Like To Receive An Autism Diagnosis Later In Life

By guest blogger Dan Carney

A key development in autism research in the last twenty-odd years has been the use of less rigid methods such as interviews, fieldwork, and surveys, instead of those based on standardised measurements or other “laboratory-based” tasks. These looser approaches, in tandem with the increasing popularity of autobiographical writing by autistic people, have served to complement more traditional research by adding nuance and detail to understandings of the condition.

Now, a team from Australia led by Rozanna Lilley has used such an approach with a population underrepresented in autism research, namely late-diagnosed adults. The authors conducted oral history interviews with 26 autistic adults born before 1975 — thus growing up before the condition was widely known — and diagnosed when over the age of 35. Lilley and colleagues were interested in how participants’ sense of their own identity has changed over time, and how receiving a diagnosis may have impacted this.

The project involved the autistic community throughout. The research team included three late-diagnosed autistic adults, two of whom conducted the interviews. An autistic advisory group was also consulted at every stage. Interviews were semi-structured, meaning questions were prepared but adhered to loosely, to enable divergence and further exploration of anything arising. This allowed participants to tell their stories in their own way, and enhance their accounts with artefacts such as photographs or other personal objects.

Responses underwent thematic analysis, whereby content is inspected meticulously for any themes that repeatedly emerge. Four key themes relating to interviewees’ perception of self came out of this analysis. The first, “being different”, reflected the fact that participants felt a sense of difference from a young age. They reported both negative factors such as feeling marginalised or excluded, and more positive ones, such as heightened intelligence, curiosity, creativity, and sense of self-containment, or being in a “bubble”.

The second theme identified was “exploring identity”. Participants reported using role-playing to help them fit in; this is in keeping with studies which have shown that autistic people sometimes employ strategies involving “camouflaging” or “masking” the true self in order to conform to societal expectations. Some interviewees also highlighted the idea of self-reinvention as a way to escape these demands.

The third theme, “the suffering self”, concerned participants’ negative self-conceptions and feelings of turmoil. For some, there was a clear relationship between trauma, negative self-conceptions, and suffering. Reported traumatic events included severe bullying and childhood sexual abuse, with one participant describing how she blamed herself for the abuse she had endured. There is relatively little knowledge about how the impact of such events may be further complicated by being autistic, and this finding emphasises the need for more work in this area.

The final theme, “being Autistic”, centred around participants’ transformed sense of self following an autism diagnosis. This was overwhelmingly positive. Diagnosis provided an explanation for past challenges, enabled self-acceptance, and contributed to a greater sense of “self-authenticity”. That diagnosis was so key to participants’ sense of their own identity contradicts studies that suggest autistic people experience their autism as “separate” from, or at odds with, their “true” selves.

The authors also observe that participants’ level of self-awareness, and their ability to reflect on their changing self-identity over time, was impressive. This is at odds with the prevailing idea — frequently inferred from studies finding autistic people’s autobiographical accounts to be lacking — that autism involves a deficit in self-perception. This suggests that how studies collect autobiographical data from autistic people is important, with a looser approach enabling richer responses.

Although all interviewees had spent most of their lives in Australia, knowledge of autism in that country has developed roughly in parallel with the UK, with inclusion of the condition in the DSM-III in the 1980s prompting a diagnostic surge in both countries. However, one sample-related limitation — which the authors acknowledge — is that most participants were white, well educated, and middle class. Given the importance of context and experience in any study based on oral histories, it is debatable whether all findings would hold across different cultural and economic backgrounds. Secondly, the authors point out that research of this nature attracts individuals who identify positively with their diagnosis. Those who have a negative experience, or might not feel particularly affected, may thus be underrepresented. Future work should address these issues.

Nevertheless, this is a study that sheds light on both the changing perceptions of the self in autistic people and the positive aspects of an autism diagnosis. It also demonstrates that research that meets autistic people on their own terms, acknowledging that they have experience-based expertise and allowing them the freedom to construct detailed and nuanced accounts of these experiences, significantly adds to our understanding of the condition.

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

Post written for BPS Research Digest by Dr. Dan Carney. Dan is a UK academic psychologist specialising in developmental disorders. He undertook his post-doctoral research fellowship at London South Bank University, and his published work has examined cognition, memory, and inner speech processes in Williams syndrome and Down syndrome, as well as savant skills in autism.