When expectation meets experience: A qualitative analysis of serial interviews with adults before and after autism assessment.
Maria Downey, Juwayriyah Nayyar, Suzanne Guerin and 1 others
PMID 41169029WHAT IT FOUND
Adults who reached autism assessment described diagnosis as relief and self-understanding.
They also described the wait, cost, long forms and lack of post-diagnosis support as stressful.
Key findings
01All 12 participants who completed post-assessment interviews received an autism diagnosis.
02After diagnosis, most participants described feeling satisfied, vindicated or validated, and relief that their struggles had a reason.
03The assessment process was often exhausting and stressful, and post-diagnosis supports were limited.
STILL TO COME
How it was doneWhat they found
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What it does not show
The study included only 14 adults, and only 12 completed both interviews. Recruitment was opt-in, so participants may have been especially invested in autism assessment. The sample was dominated by women aged 20 to 39 and people from wealthy, Westernised, English-speaking countries. No ethnicity or socio-economic data were collected. All participants had already secured a scheduled assessment, so the study cannot describe people who could not reach that stage. All 12 participants who returned after assessment received an autism diagnosis, so experiences of not receiving a diagnosis were not captured. Interviews were limited to within six weeks before or after assessment, so post-diagnosis supports and disclosure to others were not fully observed.
Declared interests
The study was supported by a University College Dublin ADVANCE grant to Dr Cliodhna O’Connor. The funders had no role in design, data collection, analysis or submission, and the authors declared no conflicts of interest.
The easy way to misread this
Do not read this as evidence that autism assessment improves self-understanding or well-being for all adults. The study interviewed 14 adults who had already reached assessment, and all 12 who completed post-assessment interviews had received a diagnosis, so it cannot describe what happens when a diagnosis is not given.
Summarised by AI from the full paper, without a clinician reviewing it. Check it against the source before it changes what you do. Read it on PubMed →