Description and predictors of self-determination in males and females with fragile X syndrome on the verge of adulthood.
L Friedman, C Moser, A J Thurman and 3 others
PMID 39134393WHAT IT FOUND
Caregivers rated young adults with fragile X syndrome as having low ability to set and pursue their own goals, but many chances at home.
School chances varied. Lower everyday skills and poorer social communication were linked to less goal-setting ability and fewer school chances.
Key findings
01Caregivers reported low self-determination capacity: 61% of males and 55% of females never or almost never set their own goals to satisfy their wants and needs.
02Caregivers reported many opportunities at home, but school opportunities varied widely, with some young adults never receiving them.
03Lower adaptive behaviour was associated with lower self-determination capacity (p = .008), and poorer social communication was associated with fewer opportunities at school (p = .020), while expressive vocabulary was not associated with capacity (p = .095) or school opportunities (p = .658).
STILL TO COME
How it was doneWhat they foundWhat it means for OTsWhat it means for SLPs
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What it does not show
The analysis used one time point and concurrent measures, so it cannot establish cause. Self-determination and opportunities were rated only by caregivers, not by the young adults or teachers. The sample was small and the analysis was exploratory, and it did not correct for multiple statistical tests. Few females were included, so sex differences could not be tested. The sample lacked racial and ethnic diversity, and the findings may not apply to under-represented groups. Participants needed to use speech and some spontaneous phrases, so results may not apply to non-speaking young adults with fragile X syndrome.
Declared interests
The supplied text lists NIH extramural research support and does not state authors' conflicts of interest.
The easy way to misread this
Do not read the links between adaptive behaviour, social communication and self-determination as evidence that improving those skills will increase self-determination. This study was a cross-sectional caregiver-report analysis of 45 young adults and tested no intervention.