SIBLINGS of children with serious illness and disability need more support to help them deal with feelings of grief, frustration and guilt, a meeting in Scotland will be told this week.
The event, organised by Scottish Autism, will hear leading expert Kate Strohm warn that not enough is being done to help youngsters with a brother or sister affected by health problems, which could lead to their own wellbeing suffering as a result.
Strohm’s experiences growing up with a sister with cerebral palsy inspired her to set up Siblings Australia to improve support for siblings of children and adults with disability, chronic illness and mental health issues.
She now travels the world to raise awareness and call for more help to be given to these siblings, who often spend their whole lives supporting their brother or sister and acting as a lifeline for them.
This week she will talk to a packed meeting of parents, carers, health workers and teachers at Scottish Autism’s New Struan School in Alloa, Clackmannanshire.
Speaking to Scotland on Sunday, Strohm said while many siblings had positive experiences, others struggle. “While many siblings feel love and care for a brother or sister with disability they can also feel quite isolated,” she said. “They might have a range of feelings such as guilt, grief, frustration, but not feel able to talk to anyone about what worries them. They might have difficulty interacting with their brother or sister and wish it was different.
“Some siblings are teased or bullied by peers, and as they get older they might worry about the future for their brother or sister.”
Strohm said the experience of growing up with a disabled sibling could lead to the child’s own health suffering if they were not given proper support.
“Young siblings don’t have the intellectual and emotional maturity to cope with the challenges they might face. Ongoing stress can have longer-term impacts, such as anxiety or depression, social isolation, or a range of physical complaints.”
In the case of autism, she said there were often communication and behavioural difficulties. “Some children with autism have particularly difficult behaviour, including aggression, and so some siblings are physically and emotionally harmed,” Strohm said.
Strohm said around the world most sibling programmes, begun by committed individuals, were not centrally co-ordinated. She called on governments to act to support the needs of siblings across the health, disability and education sectors. “They will likely be in the life of their brother or sister longer than anyone and so that relationship should be nurtured,” she said.
A Scottish Government spokesman said: “Dr Strohm raises important issues about the experience of siblings.”
He said the government’s Strategy for Autism launched in 2011 has improved services for people with autism and their families, funding six one-stop shops to provide support, including, in some areas, family and sibling drop-in sessions.”
Case study: ‘Luke helped me appreciate life’
HANNAH Farquhar can see both the good and bad sides of growing up with a sibling with a disability.
The 19-year-old from Kirriemuir, Angus, said her autistic brother Luke, now 17, was very affectionate, but could also make life difficult for her and sister Maddie, 13.
“When we were younger Luke would often scream and cause a scene, which caused people to stare and mutter, so I was aware Luke made our family stand out,” she said.
“Visiting friends’ houses and experiencing a quiet house instead of a tidal wave of noise and constant energy expenditure from the whole family made me aware our family was different, too.”
Hannah said there were many challenges living with Luke, and she found it infuriating when people did not understand.
“Everyday jobs are impossible with Luke around,” she said.
“He can’t cope with us all sitting at the dinner table together, and I can’t sit with my back to him as he may pull my hair.
“I would say Maddie suffered most as Luke would always go for her as his first target.”
But she said the challenges Luke posed had a positive impact too. “He has opened my eyes, helping me appreciate the little things in life,” she said. “He can be very cuddly, on his own terms, and I don’t think you get that from a regular brother.”