More youth caring for siblings with special needs as support programme doubles in size
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Sawako Evelyne Maury (left) is a secondary caregiver to her elder sister Ayano Justine. She hopes for more awareness about the support available for siblings like herself.
ST PHOTO: GAVIN FOO
- Siblings of special needs individuals face emotional struggles and dilemmas, often feeling overlooked or pressured. They may hide their challenges.
- MINDSibs, a support programme, addresses these caregivers' hidden struggles; its under-35 membership recently doubled to over 320, reflecting growing need.
- Lower fertility and rising diagnoses mean fewer future caregivers. MINDS advises early sibling involvement for seamless transition, ensuring special needs individuals' future care plans.
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SINGAPORE – If your parents asked you to stay home to care for a sibling with special needs when you had plans with friends, what would you do?
This question was once posed to youth participants of MINDSibs, a support programme by social service agency MINDS for siblings of people with special needs.
They gave varying answers. Sawako Evelyne Maury, 17, whose elder sister Ayano Justine Maury, 22, has autism spectrum disorder and global developmental delay, decided that she would go ahead with her plans after discussing with her parents, while others opted to stay home.
Such are the dilemmas that youth with neurodivergent siblings face, often without clear answers.
The number of caregivers below 35 years old in MINDSibs doubled from around 160 in 2021 to more than 320 currently.
Shine Koh, a senior social worker at MINDS, said Singapore’s falling fertility rate, along with rising diagnoses of special needs, could mean that fewer individuals will share the caregiving responsibilities in future.
MINDSibs was started in 2010 to support these siblings via activities like camps and small group discussions, where they learn about their loved ones’ conditions and share experiences.
These siblings often hide their struggles to avoid adding to their parents’ burdens. Some feel overlooked, while others feel pressured to overcompensate by being a “perfect child”, said Koh.
They may also be secondary caregivers – meaning they are not mainly responsible for daily care, but help with logistical tasks and give emotional support.
Tears and fears
Sawako’s parents, a French-Japanese couple who moved to Singapore in 2012, openly spoke about Ayano’s condition and involved the sisters in activities like art and cooking together from young.
Though Ayano felt like a normal part of her life, Sawako soon realised others viewed her sister differently.
One childhood memory involved Ayano giving origami that she had carefully folded to children at a playground, only for them to leave it on the ground while pointing at her.
“I remember marching back up to them and saying, ‘You pick that up right now. My sister spent a few hours making them’,” Sawako recalled, adding that she cried afterwards as she was upset about how her sister was treated.
She also felt apprehensive about inviting friends home, fearing they would have a negative impression of her or her sister.
Sawako, now a student at St Joseph’s Institution, joined MINDSibs at 14 in search of other secondary caregivers who could relate to her.
Her parents are the main caregivers to Ayano, who packs earphones for Singapore Airlines at MINDS Regional Hub’s sheltered workshop in Queenstown.
Her father, Frederic Maury, 58, takes her hiking and to art classes, while her mother Yuko Arai, 57, guides her with daily exercises to address her scoliosis.
Sawako’s role is largely one of emotional support. She recognises the signs of her sister being overwhelmed – covering her ears or making repetitive movements to calm herself down, a behaviour known as stimming.
Instead of intervening during meltdowns, Sawako usually lets her parents handle the situation and later lends them a listening ear.
“I thought it was my job to ‘parent’ her as well, but over the years, I realised that is not the role I’m meant to play,” she said.
Sawako Evelyne Maury (right), 17, whose elder sister Ayano Justine, 22, has autism spectrum disorder and global developmental delay, at their home on April 18.
ST PHOTO: GAVIN FOO
Future planning
The family, who became Singapore citizens in 2024, has had frank conversations about Ayano’s future care plans. When her parents retire, she may move to a caregiving home.
Maury, a senior executive at a quality management company, and Arai, who volunteers with some social service agencies, want Sawako to have the time and space for her own pursuits.
“It has always been our philosophy to say she should not be burdened with this (caregiving). If she does it, that should be her choice,” said Maury.
MINDS’ Koh advises parents of special needs individuals to involve their other children in caregiving discussions early to ease them into caregiving if needed in the future.
Sawako hopes for more awareness about the support available for siblings like herself, and to see communities like MINDSibs’ grow through more frequent meet-ups.
She is also her sister’s advocate.
“I’m getting more used to talking about my sister with others and about what I hope society sees in people like her,” said Sawako.
Both parents said their younger daughter is mature and offers them valuable perspectives.
Added Arai: “Sawako helps us. And that’s a big help for us.”
