Learning Disability Today
Supporting professionals working in learning disability and autism services

Siblings: are they overlooked and undervalued?

Does having a sibling with autism and/or a learning disability leave some neurotypical children feeling their needs are often overlooked by parents forced to prioritise the most vulnerable member of the family? Or does it deepen their understanding of vulnerability, foster empathy and selflessness and, ultimately, make them better people?

This is what researchers based in the Czech Republic, Switzerland and Australia are trying to find out.

The new study will look at all biological, step-siblings or adopted siblings of people with autism without gender, sex, language, social and cultural limits to analyse the range of experiences.

This is because neurotypical siblings of people with a disability or chronic illness are at risk of social marginalisation and receive substantially less support than their siblings with a disability.

The aim of the research is to help  policymakers, researchers, and service providers provide personalised support to these siblings in a systematic and consistent way.

Current research on siblings

Current research shows that typically developing children can become significant friends and companions for their autistic siblings and help with speech, behaviour and social skills through their example. There is also evidence that they become more rounded as a result, developing empathy and compassion for others. The greater challenges they face growing up can also build more resilience and strength when they face other difficulties.

Challenges include less attention from parents and a home life that can be more fraught and complicated with an unpredictable and sometimes aggressive sibling. In extreme cases, extra caring responsibilities and feeling unable to talk to parents too stressed and preoccupied with the disabled child can trigger an internal crisis caused by trying to cope.

Growing up with Jonah

Erika Lutz, 22, from Pennsylvania, in the US, has a brother called Jonah who has a learning disability and is autistic.

Erika Lutz with her brother Jonah who has a learning disability and is autistic

For five years during her childhood Erika grew up in a communal household and also lived with two sets of parents, two live-in nannies and three cousins.

She was the second eldest of eight children in the household and says she always “sought Jonah out and tried to spend time with him”, but “for a long time he was absolutely not interested”.

But now she feels she and her 24-year-old brother understand each other better and he has come to value her presence “in his own way”.

Erika says she values selflessness, vulnerability and empathy and as a child she always “sought out the kids with learning disabilities that could partake in some class activities”.

And in college she was vice president of the Best Buddies chapter, which aims to improve the lives of people with learning and developmental disabilities.

She added: “I’m not sure if I would prioritise the wellbeing of cognitively impaired individuals as much as I do if Jonah weren’t my brother.”

With eight children in the household Erika admits that “individual attention” from options trader dad Andy, 58, or historian of medicine mum Amy, 53, was a “rare commodity.” But she insists this was not because of Jonah’s disability.

“If there was an activity that the rest of us wanted to do that was not something that would be good for Jonah, an adult would take us younger kids and another adult (parent or aide) would stay back with Jonah,” she said.

“As a result, we never perceived Jonah as any sort of an obstacle to doing the things we wanted to do.”

But Erika acknowledges that in families without nannies to provide extra support siblings can end up feeling “hindered or overlooked”.

She has no concerns that she and her siblings will be expected to take on the role of being her brother’s carers once age catches up with her parents.

Her mother, who is the vice president of the US National Council on Severe Autism, wants to set up a structured and supervised round-the-clock group housing facility for Jonah.

Though this is not available for her brother at the moment, Erika is hoping “it won’t be that way forever”. She said she would feel “overwhelmed” if she had to take on her brother’s care.

Erika said she recalls episodes before Jonah was stable when he ripped out a fistful of hair from one of the nannies, punched windows and she had to wait for him to calm in her bedroom.

But at no point did she ever feel threatened by his outbursts because by some “miraculous feat of parenting heroism” her mother and father never let their anxieties about Jonah’s behaviour spread to the children.

Siblings have a mix of challenges

Psychologist Dr Lucy Watson led a review study in 2021 that looked at the experiences of siblings of autistic children and she also found a mix of challenges and benefits.

Alongside increased responsibilities, struggles with their siblings’ behaviour and their own mental health, she found they develop empathy, understanding and acceptance. But Dr Watson, whose work was published in the journal Clinical Child Psychology, says ultimately siblings need more support with the extra challenges they face.

She added: “I am extremely passionate that the simplest way of supporting siblings is to listen to what they have to say themselves. Provide them with a safe space, with no ‘negative consequences’ of sharing how they feel and what they think may help them.

“While there may need to be negotiation, and in some cases considerable negotiation, every child has needs — regardless of ‘labels/diagnoses’ — and difficulties often spiral when those needs are not met (just as could and does happen to each one of us).”

Dr Watson said awareness raising work is required to ensure the needs of siblings are heard in family assessments.

Though support groups for siblings exist thanks to the efforts of parents and the charity sector their availability is often a “postcode lottery”, she added.

Sibs is the only UK charity dedicated to supporting people who grew up with a disabled brother or sister.  They provide support, training, run events provide resources for siblings across the lifespan, as well as those supporting them.  For more information about their work go to www.sibs.org.uk

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