Surveying parental experiences of receiving a diagnosis of developmental coordination disorder (DCD).
UK parents wait 2.5 years for a DCD label and leave empty-handed—fix the post-diagnosis hand-off and you fix their biggest gripe.
01Research in Context
What this study did
Alonso Soriano et al. (2015) asked UK parents how long they waited for a developmental coordination disorder (DCD) diagnosis. They sent a short survey to families already in support groups.
Parents answered questions about the steps, the wait, and how satisfied they felt with each part of the process.
What they found
Half of the parents waited about 2.5 years from first worry to final diagnosis. Forty-five percent said they were unhappy with the process.
The biggest complaint was not the testing itself. It was the silence after the label—no clear plan, no next-step help.
How this fits with other research
Park et al. (2024) pooled 27 studies and showed the DCD Questionnaire has only moderate accuracy. Long waits make sense if the tool itself misses some kids.
Harris et al. (2021) found adults with DCD feel high anxiety and low confidence. Claudia’s survey hints that the slow, vague pathway may plant those worries early.
Eugenia Gras et al. (2003) tracked mothers of children with intellectual disability and saw depression levels fall over time. Claudia’s parents are still in the diagnostic fog, so their stress is peaked—same journey, earlier timepoint.
Why it matters
You can shorten the family pain cycle. After you give a DCD diagnosis, hand the parent a one-page action sheet: therapy contacts, school accommodations, and a check-in date. This tiny step tackles the top complaint and may curb later anxiety shown in Sophie’s adult data.
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02At a glance
03Original abstract
Receiving a diagnosis of a developmental disorder has a major impact on an individual and their family. However, little is known about parental experiences of having a child diagnosed with developmental coordination disorder (DCD). In this study, 228 parents completed an online survey about their experiences of obtaining a diagnosis of DCD for their child in the United Kingdom. Results demonstrated that, on average, a diagnosis was confirmed two and a half years after parents initially sought professional help in relation to their child's motor difficulties. Satisfaction with the overall diagnostic process was mixed: 45% of parents were dissatisfied (26%=very dissatisfied, 19%=quite dissatisfied) and 39% were satisfied (16%=very satisfied, 23%=quite satisfied). Four factors were predictive of parental satisfaction with the overall diagnostic process: the stress of the diagnostic process; the manner of the diagnosing professional; satisfaction with post-diagnostic support; and the time taken to get a diagnosis. Post-diagnostic provision was the area in which parents reported most dissatisfaction; an unsurprising finding given that 43% of parents were not offered any practical help or support during the diagnostic process or in follow up appointments (although there was an indication that this was improving). Based on these findings (as well as previous research), we propose three key areas in which improvements in the diagnostic process for DCD are needed: (1) greater awareness about DCD in order to facilitate earlier recognition; (2) implementation of clear referral pathways, to reduce the time taken to receive a diagnosis; and (3) increased post-diagnostic support within health and educational systems.
Research in developmental disabilities, 2015 · doi:10.1016/j.ridd.2015.06.001