A parent-sibling dyadic interview to explore how an individual with Autism Spectrum Disorder can impact family dynamics.
Families feel both overwhelmed and closely bonded when living with autism, and lockdown made the load heavier.
01Research in Context
What this study did
Condy et al. (2021) sat down with parent-sibling pairs across the UK. They asked each pair to talk together about life with an autistic family member.
The researchers used open questions. Families described daily routines, feelings, and how lockdown changed things.
What they found
Families said autism "dominates" the home. Yet the same families also felt tightly knit and proud of each other.
Lockdown made parenting harder. It also showed families they needed more outside help than they were getting.
How this fits with other research
Schmeer et al. (2021) asked almost the same question and got the same mix of love and strain. Their 2021 interviews add that non-autistic siblings can grow new emotional skills but may hide their own problems.
Isensee et al. (2022) and Marcone et al. (2023) turn the "lockdown strain" feeling into numbers. Both surveys show parental stress doubled and therapy stopped for about half of families in Germany, Austria, and Italy.
Burnham Riosa et al. (2023) let younger siblings speak alone. They found kids feel both "special" and "ordinary," backing up Emma’s picture of close but complicated bonds.
Sivberg (2002) saw higher family strain in ASD homes long before COVID. Emma’s words simply give today’s voice to that old data.
Why it matters
When you meet a family, ask how the sibling is doing, not just the autistic child. Offer a quick check-in or resource list for the brother or sister. After you hear "everything’s fine," ask once more; many hide their stress. A five-minute sibling screen can prevent later emotional problems and keeps the whole system working.
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02At a glance
03Original abstract
BACKGROUND: Autism Spectrum Disorder (ASD) is a life-long condition which affects the individual and their family system. Little research understands the impact of an ASD upon families, how this may change over time and how COVID-19 has impacted these dynamics. AIMS: To explore the impact of an ASD on the lived experiences of parents and neurotypical adult siblings, including during the UK COVID-19 lockdown. METHODS: Eight parent-sibling dyads (16 individuals) completed semi-structured interviews discussing their family before, during and after receiving the ASD diagnosis, and in relation to the first UK lockdown. Interview transcripts were analysed using Interpretative Phenomenological Analysis. RESULTS: Three super-ordinate themes were identified: Dominated by ASD; Family Cohesion; and the Need for Support. CONCLUSIONS: The data suggested a closeness within the families and an adoration towards the individual with ASD (IWA). Dyads were, to an extent, consumed by the diagnosis both presently and in the future, implicating the need for a stretch in services to support parents and neurotypical siblings. In terms of the first UK lockdown, the IWA added an extra layer of difficulty to the dyads work-life balance yet there was an essence of family cohesion. Future research should consider longitudinal methods and explore the impact of ASD co-morbidities upon family dynamics.
Research in developmental disabilities, 2021 · doi:10.1016/j.ridd.2021.103884