Parent concerns prior to an assessment of autism spectrum disorder: A systematic review.
Dominique Solia, Loai Albarqouni, Paulina Stehlik and 2 others
PMID 39394965WHAT IT FOUND
Parents' concerns before an autism assessment vary widely.
Speech and language issues were the most common concern across all studies, ranging from 27% to 84%. However, social concerns were much more frequent in older children, while parents of children later diagnosed with other conditions focused more on behaviour and medical issues.
Key findings
01Speech, language, and communication concerns were the most frequently reported concern across all included studies, appearing in 27% to 84% of parent reports regardless of the clinic type.
02The prominence of social concerns depended on the child's age, with parents of older children reporting social issues far more often (51% to 60%) than parents of younger children (7% to 27%).
03Parents of children who did not receive an autism diagnosis were more likely to report medical, regulatory, and behavioural concerns, whereas parents of autistic children reported more ASD-specific concerns.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPs
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What it does not show
Most participants were not representative of the general population of children referred for assessment, with some studies including only children who received a positive diagnosis. The review could not determine the spontaneous cause for concern or parents' motives for seeking help because all participants were already referred or part of longitudinal studies. Data collection methods varied widely, with some studies prompting parents to focus on specific behaviours, which likely influenced the frequency of certain concerns like motor issues. Information on parents' cultural background, first language, and prior services accessed was limited, despite evidence that these factors significantly impact how concerns are reported. Only one qualitative study explored parents' underlying worries and experiences, leaving a gap in understanding the emotional context of the pre-diagnostic period.
Declared interests
The authors declared no potential conflicts of interest. The research was funded by a Bond University Research Scholarship.
The easy way to misread this
Do not assume that the low frequency of motor concerns means they are rare in autism. One study reported 30% motor concerns because parents were specifically prompted to discuss them, while others reported 3% to 8%. The way questions are asked significantly changes what parents report.