For youth growing up with neurodivergent siblings, the path to adulthood is often paved with complex, silent dilemmas. From balancing social lives to managing the emotional weight of a sibling’s needs, these young “secondary caregivers” frequently navigate a landscape where there are no simple answers.
At the heart of this experience is a delicate negotiation of boundaries. For 17-year-old Sawako Evelyne Maury, whose 22-year-old sister Ayano Justine Maury has autism spectrum disorder and global developmental delay, these challenges have been a lifelong reality. While some peers in similar situations choose to stay home to assist their families, Sawako has learned to communicate her needs with her parents, opting to maintain her personal plans while remaining a vital source of emotional support for her family.
Did You Know? The number of caregivers under the age of 35 participating in MINDSibs, a support programme for siblings of individuals with special needs, has doubled since 2021, rising from approximately 160 to more than 320 today.
The Burden of the “Perfect Child”
Social service experts observe that many siblings of neurodivergent individuals suffer in silence. According to Shine Koh, a senior social worker at MINDS, these young people often feel a pressure to overcompensate by becoming a “perfect child” to avoid adding to their parents’ existing burdens. This can lead to feelings of being overlooked, as the family’s focus naturally shifts toward the primary needs of the neurodivergent child.
For Sawako, the journey has involved shifting her own expectations of her role. While she once felt it was her duty to “parent” her sister, she has since come to understand that her primary contribution is emotional support and advocacy. By recognizing signs of sensory overwhelm—such as stimming—she provides a calm presence, allowing her parents to manage the more intensive aspects of caregiving.
Expert Insight: The rising trend in young caregivers highlights a critical societal shift. As fertility rates decline and diagnoses of special needs increase, the future of family-based care will likely rely more heavily on the shoulders of siblings. This demographic shift necessitates a proactive approach where open, early communication about long-term care becomes a standard for families, ensuring that the next generation of caregivers is supported rather than burdened.
Looking Toward the Future
As the primary caregivers age, families are beginning to have more frank, practical conversations about the future. For the Maury family, this includes the possibility of Ayano transitioning to a caregiving home when her parents retire. Such planning is designed to protect Sawako’s autonomy, ensuring that her involvement in her sister’s life remains a choice rather than a necessity.
In the years to come, the landscape of caregiving may evolve as more awareness is brought to the unique needs of siblings. With initiatives like MINDSibs providing a community for shared experiences, more young people may find the confidence to advocate for their sisters and brothers while pursuing their own paths. Greater societal understanding could also play a role in reducing the apprehension many siblings feel when bringing friends into their home environments.
Frequently Asked Questions
What is the role of a secondary caregiver?
Secondary caregivers are not primarily responsible for daily care but assist with logistical tasks and provide essential emotional support to the family.
Why is the number of young caregivers increasing?
While the specific reasons are complex, experts point to a combination of rising special needs diagnoses and lower fertility rates, which mean fewer family members are available to share caregiving responsibilities over time.
How can parents help siblings of special needs children?
Social workers advise parents to involve their other children in caregiving discussions as early as possible. This helps to normalize the conversation and ensures the child does not feel burdened or blindsided by future responsibilities.
How might our communities better support the mental well-being of young people who grow up as secondary caregivers?
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