Children with an autistic sibling are often involved in their care

Society needs to become more aware of the siblings of people with intellectual disabilities (ID) or autism spectrum disorder (ASD), according to a recent UCC study.

Researchers investigated the experience of 25 siblings — now aged 18-45 — who grew up with a brother/sister with an ID/ASD.

The research explored three main themes: childhood experiences, current adult sibling relationships and hopes/aspirations for the future.

“Most of them thought their life was normal [when young] but in hindsight felt they were socialised from the start into ‘minding’ their sibling,” says senior lecturer in social policy Dr Máire Leane, who led the research team.

A small number had negative memories of how the disability affected their childhood — one girl recalled parents unable to cope with a child who screamed a lot and needed constant surveillance, while she herself tried to study for her Leaving Cert.

“But, in the main, as adults looking back, they were still very connected with their brother/sister, still very loyal and involved in their care.”

All participants described how family practices were designed around the child with the disability.

“Parents divided their time. Mum often looked after the child with the disability, while dad or grandparents looked after the other children, taking them to football and so on. Most rarely remembered doing anything together as a family.”

For the children, the experience of having a sibling with an ID/ASD changed as they got older.

“It was less of an issue pre-adolescence,” says Leane. “Adolescence was a more difficult time — they didn’t want friends coming round because they felt embarrassed by their sibling’s unpredictable behaviour.”

Many of those surveyed felt they didn’t get appropriate information about the disability as they were growing up.

Explaining parents’ reluctance to talk with their other children about the future for their child with a disability, Dr Leane says: “Often parents aren’t sure what options there are. When they look at what’s available, it’s very limited and mightn’t be the type of future they want for their children.”

Children with ID/ASD are increasingly attending mainstream school, so Leane sees a need to integrate information about disability into the curriculum.

“Trying to explain why your sibling behaves in an odd way or looks a bit different can be hard for children.”

What helps

Respite — gives rest of family time/space to do things together.

‘Sib-shops’— programme for older children (aged seven plus), where they meet peers, who also have siblings with ID/ASD, e.g. Cork Sibling Support Project.

Visit https://goo.gl/2Yj7UH for teens with siblings with ID/ASD.

UCC study found professionals rarely consult siblings of those with ID/ASD, yet Leane says:”Professionals should take full family approach.”