"Sometimes I Feel Grateful…": Experiences of the Adolescent Siblings of Children with Autism Spectrum Disorder in Malaysia.
Shin Ying Chu, Siti Nur Zafirah Binti Kassim, Chun Hong Gan and 3 others
PMID 34247302WHAT IT FOUND
Adolescent siblings of children with autism in Malaysia described struggling to communicate due to a lack of specific strategies.
They managed breakdowns through trial and error and internalized their distress. Four siblings who attended therapy sessions reported better understanding.
Key findings
01Siblings reported that their attempts to communicate were limited by the autistic sibling's difficulty in maintaining conversation and understanding instructions, leading to frustration.
02Most siblings used avoidant coping strategies such as self-isolation or distraction to manage their negative emotions, rather than expressing them to the family.
03Four of the fourteen participants who had attended speech-language therapy sessions with their siblings reported a better understanding of the condition and how to interact.
STILL TO COME
How it was doneWhat they foundWhat it means for SLPs
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What it does not show
The sample size was very small (14 participants) and limited to one cultural context (Malay ethnicity in Malaysia), so findings may not generalize to other populations. The study was cross-sectional and qualitative, meaning it describes experiences at one point in time and cannot establish cause and effect or track changes over time. Some interviews were conducted by telephone due to pandemic restrictions, which may have reduced the ability to observe non-verbal cues. The study did not collect data on the severity of the siblings' autism or their specific language abilities, so it is unclear if the communication challenges were due to the severity of the disorder or a lack of sibling training.
Declared interests
The study was funded by a UKM incentive grant. No other conflicts of interest were declared.
The easy way to misread this
Do not interpret the finding that therapy attendance improved understanding as proof that sibling participation causes better outcomes. The study did not compare outcomes between those who attended and those who did not, and the group who attended was very small (four participants).