When Joanne* was 13 years old, she invited a friend home from school to work on an assignment. They had barely gotten through some initial research when Joanne’s younger sister, who had an intellectual disability, became “fixated” on using the computer, which she did not know how to use.
“I kept [saying] no because I had my friend over and she lost it,” Joanne recalls. “She was screaming and throwing things and kept following us through the house. We had to call my friend’s dad to come pick her up because we weren’t going to get anything done.”
When her friend left, Joanne went into her bedroom alone and expressed herself the only way she felt she could: by bawling her eyes out.
Today, more than 20 years later, Joanne has come to terms with such periods in her childhood and adolescence – feelings of resentment and then guilt over that resentment; the craving of her parents’ attention alongside an awareness that her sister, whom she loved, needed them more than she did; and the ongoing anxiety that stems from constantly being “mindful” around her sister and “always living on edge” to avoid triggering an outburst, or worse.
Children with neurodevelopmental conditions or mental health issues often have extremely difficult childhoods and require great levels of attention from their caregivers, often as a matter of survival. As first-hand witnesses of their experiences, their siblings understand the extra care they might receive makes a difference to their quality of life, but that does not make their own feelings any less complicated.
For adults who grew up with a sibling affected by a neurodevelopmental condition, severe mental illness or disability, Joanne’s sentiments and the effects of her formative years on her current mental state may be familiar.
‘A complex range of emotions’
A 2018 meta-analysis of studies on siblings of children with autism spectrum disorder found they fare negatively when it came to internalising behavioural problems, psychological functioning and social functioning. Another study reported that siblings of children with mental health disorders can experience elevated levels of psychological distress, which places them at increased risk for mental disorders themselves. The risk, another study found, may “differ between neurodevelopmental disorders”, but one thing is clear: being the sibling of a child who has demanding health issues comes with feelings and reflections that can be perpetually fraught.
It’s all part of the complex “range of emotions” that such people feel throughout their lives, says Prof Adam Guastella, the Michael Crouch chair in child and youth mental health at the University of Sydney’s Brain and Mind Centre.
Guastella says although people often report positive feelings from their situation, the complex and sometimes contradictory emotions they feel should be addressed where possible. That is particularly because siblings will also face the stigma, discrimination and exclusionary practices that people with disability face, but with the added pressure to “go in and protect” their sibling.
“As children they often will cycle between a sense that they have to care for, protect and look after [their sibling],” Guastella says. “Often children will report a feeling of trying to be perfect for their parents and mixing that with sometimes feeling like they’re not getting the same amount of attention, [or that] maybe they don’t deserve the priority and then feeling guilty about having those feelings.”
Compounding this is the “poor sibling” narrative. Author Kay Kerr, who wrote Love & Autism, says it is “a bit of a trope” in books, TV shows and movies that focus on having to deal with an autistic sibling. That can be detrimental to those with the condition, who “often already feel as though they are making life more difficult for the people they love”. Kerr argues conversations around the wellbeing of siblings must ensure they’re not at the expense of the autistic people involved.
Left to fester without conversation, however, the experiences of all siblings are likely to have longer-term consequences.
Thomas* is matter-of-fact about the link between his own fragile mental health and his experiences as the younger sibling of a child with an intellectual disability and epilepsy. Bullied in primary school and having struggled with depression since the later years of high school, he now takes anti-depressants after years of professional treatment.
“I directly relate this to my sister’s condition and family situation,” he says. “It has affected my own life choices and I’ve increasingly become sad reflecting on my mother and sister’s missed opportunities. I also think my experience has made me aware of how unfair and hard life can truly be.”
That awareness, and the feeling of being torn between multiple emotions, is a common sentiment shared between those who had siblings with neurodevelopmental and neurological conditions, and those whose siblings had mental health conditions. The feelings of non-affected siblings interviewed for this article evolved similarly; from a childhood resentment or sense of “selfishness” (as it was often described) for craving their parents’ attention to a more complex, dichotomous set of emotions in older age – one that recognised their own childhood suffered but made space for empathy, compassion and understanding for their brother or sister in their adult years.
Louise Birrell, a research fellow from the Matilda Centre for Research in Mental Health and Substance Use at the University of Sydney, says we need more research that “acknowledges and addresses how childhood experiences of sibling mental ill health may impact on adult life”.
“The experience of siblings of individuals with mental illness is an often-overlooked aspect of mental health,” she says. “Research shows that siblings of individuals with severe mental illness can develop feelings of loss and grief for the changes they may see in their sibling, which can endure into adulthood. It can also negatively impact the sibling’s quality of life and increases the risk of onset of their own mental health issues.”
‘There’s no blanket response’
Birrell says the complexity of having a sibling with mental health issues can cause confusion “about boundaries within the sibling relationship”. She cites studies that find individuals who grew up with siblings with mental health issues may feel conflicted by desires to be involved and available for their sibling, while also needing distance or independence.
She says there is some evidence that families of children with mental health problems “have significantly less positive” sibling relationships and more negative sibling relationships, with higher levels of conflict and bullying compared to families without a child with mental illness. Positive sibling relationships are characterised by warmth, closeness and shared activities.
“In one study, adult siblings reported facing issues such as fear, stigma, detachment, worries about the future, and burden of care, which can endure from the onset of their sibling’s illness to adulthood,” she says. “Adult siblings of individuals with early onset-psychosis typically reported … that their emotional wellbeing is affected by a range of feelings including fear, worry, shame, guilt, and loss.”
Anne, 31, grew up with an older brother with schizophrenia and says she’s “still handling” many of the complex emotions that stemmed from his mental health condition.
“My teenage years were hard,” she says. “My brother was in and out of hospital or in housing for people with mental health issues. Year after year, he became more and more disconnected [from] reality. I did all the extracurricular activities I possibly could [and] would often stay at friends’ houses. I didn’t like being home because of the tension.”
Anne recalls acting out and “drinking a lot” during her teenage years. She says although there is some lingering anxiety and panic attacks, she has overcome the resentment she previously felt and is “trying to overcome” the shame of feeling resentful in the first place. Her relationship with her brother “disintegrated” some time ago and her family rarely discusses the events of her childhood and youth – memories that used to make her angry.
So might talking about it in their younger years have helped?
Absolutely, says Guastella, though “there’s no blanket response”.
“If you can promote listening to the other person’s needs and have the opportunity to express your own needs and then meet in the middle, coming to solutions that factor in both points of view, then absolutely you should raise your concerns and discuss them openly,” he says. “When communication is hostile and blaming and volatile, then maybe you might need an independent party to help.”
At this point many seek the benefits of family therapy, where all perspectives may be heard and which allows family members to learn the same – rather than conflicting – communication and coping skills.
Guastella says the “unwritten rule” that siblings will look after their brother or sister when the parents pass away is one of the biggest issues he’s seen in practice.
“Often parents will … take on a lot of the caring roles before that happens, but they’re acutely aware that they will have to take responsibilities later in life,” he says. “In that scenario, involve them in the planning and problem-solving process earlier on so there’s a shared understanding of what’s going to happen longer term.”
Nora* was aware of that responsibility from such a young age that she made life choices – moving out of home later in life and choosing work placements close to her parents – with her physically and intellectually disabled sister in mind.
As a kid, it felt like she was “robbed of a childhood”.
“You just needed to grow up and understand, to be responsible, to put your needs into perspective,” she says. “If you’re 12 years old, it’s a big ask, [but] their survival [was at stake]. Your needs came second, because it was life or death for my sibling.”
But now she feels that caring for her sister had a positive effect on her life, and she chose to become a doctor because of time spent in children’s hospitals when she was young.
Birrell says sibling relationships are an “underutilised protective factor” in the family unit because of the social support they offer. But it is “important to adequately support the sibling and acknowledge they can experience substantial psychological distress themselves.”
How can an overwhelmed parent do this?
Psychologist Sarah Saddik says giving children the freedom to ask questions – no matter how blunt they might seem – leads to a reduction of stigma around neurodiversity, mental health and disabilities. This allows them to “meet the world with more curiosity and be more likely to accept others’ differences”.
She recommends parents practise emotional safety around their other children where possible by validating – rather than judging – any feelings they might have.
“There are no ‘right or wrong’ or ‘good or bad’ emotions,” Saddik says. “There are only emotions, all part of the human experience. [So] if the child said, ‘Mummy, I’m so angry with my brother because he screams and cries all the time [and] I don’t get to watch my movie in silence,’ try not to respond with, ‘You don’t need to feel angry, you know he’s different and needs help.’
“It may be more helpful to respond with, “It’s OK to feel angry when your brother is crying loudly,’ and follow up [with] a solution like, ‘Would you like to wear some headphones so that you can focus on your movie and hear less of his crying?’”
She also advises parents set aside quality time (with no distractions or chores) with the child or adolescent that does not have neurodevelopmental or mental health concerns – making it clear that time is set aside for them only.
“It’s important to consider that while you help the neurodivergent child, the neurotypical child is not also developing a mental health disability of their own if they are not getting their basic emotional needs met by the parent.”
Guastella says thinking strategically and building a community and support network that engages the different parts of the family and carving out time for each person to nurture their own needs is also important. “Don’t just soldier on.”
Joanne harbours no resentment for her own childhood. Having children has taught her that a person’s ability to parent is compromised not just by a special needs child but “having a number of children in general”.
“I have a heightened anxiety but also a level of empathy and compassion that only comes with these struggles,” she says. “So I’ll take the good and the bad because as my mum always says, ‘There is no family at rest.’”
* Names have been changed to protect privacy
