The impact of having a sibling with an intellectual disability: parental perspectives in two disorders.
Siblings of children with Down or Rett syndrome feel both strain and growth—ask about both sides in every family meeting.
01Research in Context
What this study did
Parents filled out a survey about life with two different disabilities. They had one child with Down syndrome or Rett syndrome and at least one child without.
They answered open questions about how the disability shaped the brothers and sisters who do not have it.
What they found
Parents told a two-sided story. They said the other children lost free time, felt left out, and carried extra worry.
At the same time they saw good traits grow: patience, kindness, and pride in helping.
How this fits with other research
Galuska et al. (2006) asked the same question and found no extra behavior problems in Down-syndrome siblings. The new survey adds parents’ own words, so the picture is richer, not opposite.
Cianfaglione et al. (2015) later looked only at Rett families and still saw mixed results, backing up the 2008 view.
Capio et al. (2013) looked at Prader-Willi families and found severe stress and PTSD in 92 % of siblings. That sounds like a clash, but Prader-Willi brings extreme food stealing and tantrums. Down and Rett are calmer, so siblings fare better. Same method, tougher disability, darker outcome.
Alon (2026) and Alon (2024) followed the now-grown brothers and sisters. Higher optimism linked to warmer feelings, showing the early “character benefits” can last if we feed them.
Why it matters
When you meet a family, ask about each child, not just the one with the diagnosis. Praise the helpers, give them breaks, and teach simple coping lines like “I need ten minutes.” A five-minute check-in can turn today’s burden into tomorrow’s strength.
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02At a glance
03Original abstract
BACKGROUND: The potential effects on other children when there is a child with intellectual disability (ID) in the family are being increasingly recognized. This study describes the impact of having a sibling with Down syndrome or Rett syndrome using a questionnaire completed by parents. METHODS: The parents of 186 Western Australian children with Down syndrome and 141 Australian girls and women with Rett syndrome participated in the study. Patterns of reporting disadvantages and/or benefits were compared across a number of child and family variables (age, functional ability and birth order of the affected child, number of siblings and number of parents in the family home) and by socio-economic status as measured by the index of relative socio-economic disadvantage and by area of residence. Parents' responses to open-ended questions about the benefits and/or disadvantages for siblings of their child were analysed for themes. RESULTS: The majority of parents in the Rett syndrome and Down syndrome groups reported both disadvantages and benefits for siblings. In the Rett syndrome group, families from outer regional areas were the least likely to mention disadvantages and those with a smaller family more likely to note disadvantages. In both groups, more socio-economically advantaged families were more likely to report disadvantages. In the Down syndrome group, benefits were also more commonly reported by parents who were socio-economically advantaged, and by larger and two-parent families. Major disadvantages for siblings centred around parental and personal time constraints, relationships and socializing, restrictions, parental emotion and burden of helping. Major benefits were related to personality characteristics. CONCLUSION: Parents identified both benefits and disadvantages to the siblings of their child with either Rett syndrome or Down syndrome. It is important that these findings are incorporated into any discussion around the impact on the family of a child diagnosed with an ID.
Journal of intellectual disability research : JIDR, 2008 · doi:10.1111/j.1365-2788.2007.01005.x