'A way to be me': Autobiographical reflections of autistic adults diagnosed in mid-to-late adulthood.
Learning they are autistic after 40 lets adults rewrite life struggles as part of a valued identity.
01Research in Context
What this study did
Lilley et al. (2022) talked with 26 adults who learned they were autistic after age 40.
The team asked each person to tell their life story and explain how the late label changed their view of themselves.
All interviews were recorded, typed out, and sorted into themes by two researchers working alone.
What they found
Every adult said the diagnosis gave them a new, proud way to describe lifelong differences.
They stopped blaming themselves for social struggles and began to value autistic strengths.
Most joined autistic peer groups and felt less alone for the first time.
How this fits with other research
Hickey et al. (2018) saw the same life-review pattern in adults over 50, so the finding is holding up across studies.
Fradet et al. (2025) add a warning: late-diagnosed adults also show more parkinsonism signs, so pride may coexist with hidden health risks.
Hare et al. (2007) seems to disagree—autistic adults recalled fewer self-events—but their group was diagnosed young and had intellectual disability, while Rozanna’s group had average IQ and decades of masking; different samples, different stories.
Why it matters
If you serve adults born before 1975, expect a wave of late autism discoveries. Validate their new identity, link them to autistic-led groups, and screen for motor and sleep issues that can ride along. A simple “Tell me what the label means to you” can open a powerful first session.
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02At a glance
03Original 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.
Autism : the international journal of research and practice, 2022 · doi:10.1177/13623613211050694