UK parents' experiences of their child receiving a diagnosis of autism spectrum disorder: A systematic review of the qualitative evidence.
UK parents need emotional support, clear facts, and inclusive talks during autism diagnosis—especially dads who feel sidelined.
01Research in Context
What this study did
Legg et al. (2019) pulled together every UK study that asked parents, 'What was getting the autism diagnosis like for you?'
They kept only papers that used interviews or focus groups. No surveys or check-box forms.
The team read each paper line-by-line and grouped repeating ideas into themes.
What they found
Three big needs showed up in every paper: emotional support, clear facts, and real two-way talk with professionals.
Fathers kept saying they felt left out. Mothers got most of the phone calls and paperwork.
Parents wanted someone to say, 'We will stay with you after the label,' not just hand over a report.
How this fits with other research
Crane et al. (2016) asked the same UK parents to tick survey boxes and found long waits and low satisfaction. Hannah’s deeper dive shows why: parents are hurting for emotional care, not just faster dates.
Gregory et al. (2020) counted that about one in three autism parents have clinical depression or anxiety. Hannah’s themes give the lived story behind those numbers.
Rana et al. (2024) describe parent-to-parent groups as a new service. Hannah’s review says parents crave relational help, so peer groups could fill the gap.
Why it matters
You can fix the emotional hole right now. After you give the diagnosis news, pause and ask, 'How are you feeling at this moment?' Offer a dad-only follow-up call the next week. Hand parents a one-page sheet with local parent groups and a crisis-line number before they leave. These tiny moves speak to the three needs Hannah found and cost nothing.
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02At a glance
03Original abstract
The purpose of this article is to systematically identify, appraise and synthesise qualitative research concerning UK parents' experiences of their child receiving a diagnosis of autism spectrum disorder. In total, 11 articles were located through a systematic search of five databases, reference lists, citations and grey literature. These were critically appraised and their results synthesised using meta-ethnography. The quality scores given to included studies were variable, so suggestions are made to improve reporting of future research. Three third-order constructs were developed: (1) emotional needs, (2) informational needs and (3) relational needs. Each relates to parents' needs as they navigate the process of making sense of their child by seeking and adjusting to a diagnosis of autism spectrum disorder. Parents' experiences of assessment and diagnosis of their children varied, but these needs were evident across the course of the process. Fathers seemed to find it more difficult than mothers to reconcile having a child with autism spectrum disorder, which may have been grounded in a sense of exclusion from the assessment process. The findings should be considered by professionals working with children, particularly those directly involved in diagnosing autism spectrum disorder. Clinical implications emphasise the need for consideration of parents' emotional needs, provision of information to aid understanding, and strong relationships with professionals. Future clinical research, which should be informed by quality standards, might develop and evaluate standards of assessment and diagnosis, including post-diagnostic support.
Autism : the international journal of research and practice, 2019 · doi:10.1177/1362361319841488