The not guilty verdict: psychological reactions to a diagnosis of Asperger syndrome in adulthood.
Adults who learn they have Asperger syndrome need space to rewrite their life story—clinicians should treat the moment as therapy, not just paperwork.
01Research in Context
What this study did
Clare and colleagues interviewed adults who learned they had Asperger syndrome after age eighteen.
The team asked how the new label changed the way people saw themselves and their past.
They grouped the answers into six themes, such as relief, anger, and re-writing life story.
What they found
Most adults felt a wave of relief: the diagnosis explained years of feeling different.
At the same time they felt grief for lost time and worried about stigma.
The label became a new lens that re-colored every childhood memory.
How this fits with other research
Helles et al. (2017) tracked men for twenty years and showed that losing the ASD label later was linked to better jobs and independence. That seems to clash with Clare’s finding that getting the label feels helpful. The gap is timing: Clare captures the first emotional storm; Adam shows long-term life paths.
Lugnegård et al. (2011) adds a warning: seven in ten adults with Asperger also meet criteria for major depression. Clare’s themes of grief and relief fit this risk.
Jennes-Coussens et al. (2006) found lower quality of life in the same group. Clare gives the inside view of why: the diagnosis makes people re-evaluate every failed friendship or job.
Why it matters
When you give an adult the Asperger news, expect a roller-coaster. Build in time for them to retell their life story. Offer written resources and peer groups so the relief turns into action, not depression. A simple "How are you making sense of this?" in your next session can open the door.
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02At a glance
03Original abstract
Asperger syndrome is a relatively new diagnostic classification. A number of factors make receiving a diagnosis of Asperger syndrome in adulthood a unique experience. This study used a phenomenological approach to examine the experiences of 10 adults receiving such a diagnosis. Results suggested that six major themes were associated with receiving a diagnosis of Asperger syndrome. Individuals discussed their negative life experiences and their experience of services prior to diagnosis, which led to individuals holding certain beliefs about the symptoms of Asperger syndrome. These beliefs had an effect on the formation of each individual's perceived self-identity. Participants made links between how they felt when they received the diagnosis and their current beliefs about both their ;symptoms' and themselves. Finally, participants highlighted the importance of the societal view of Asperger syndrome. The implications of these findings are reappraised in the context of previous research and the wider literature on identity formation.
Autism : the international journal of research and practice, 2009 · doi:10.1177/1362361309103795