Having a sibling on the autism spectrum

Highs and lows

Having a sibling with autistic spectrum disorder (ASD) had both high and low points for the people we spoke with, which changed over time as they grew older. 

Whilst a lot of the stories and experiences people talked about centred on the difficulties and challenges of having a sibling with ASD, they also talked about the rewards and benefits. People described their experiences as “character building” and some felt they had become better people as a result. Others described how they had become “independent” or “cautious”. A few people said that, although they had experienced difficulties, they wouldn’t change their siblings or anything about their lives so far. 

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An enhanced understanding of 'difference' and 'disability' generally was one of the main things people talked about. They said that growing up with their sibling had made them more tolerant and understanding of people in general and also of disabled people. They said that they would neither stare nor make jokes about people who appeared to have physical or learning disabilities. They also said that they had become knowledgeable about ASD. One person was able to “educate my friends about it”. Another said her experiences would enable her to cope with having children on the spectrum. It was something she would “take in my stride and adapt to”.

Some people said that they had learned about and done things that they otherwise wouldn’t have done. For example, one person attended a young carers group and another said that because she had to look out for her brother, she avoided drinking, smoking or doing drugs. Some people also said that growing up with their sibling had influenced their choice of career; one person was a speech and language therapist, another was a learning support assistant for children with Asperger syndrome. A few thought that their schooling had improved because of factors related to their siblings. One said she attended a better school when she and her family moved to a new town to be nearer to her brother’s school. Another said that her schoolwork “benefited” because she wasn’t “distracted by other things”. However, her brother’s dependence on routine meant that doing extra-curricular activities was difficult.

Some people felt rewarded by their relationships with their siblings (see ‘Relationship with siblings’). Some of them also said that their experience with their siblings had helped them to learn to put things into perspective. One said that as a result she is less sympathetic to people who worry about trivial things like dying their “hair the wrong shade of black”.

“It’s probably changed the dynamics of the family”
Most people felt that their relationship with their parents was different to what it might have been if they didn’t have a sibling with ASD. Several people felt very close to their mothers; as one person said, “We’ve been through the thick and thin”. One woman thought that her parents found spending time with her “a lot gentler than with my brother”. 

One person said she felt jealous of the relationship between her mother and brother, and often ended up going out more with her father. Others felt that a lot of their parents’ attention had been focused on their sibling and they had missed out. A few remembered being “resentful” of their siblings when they were younger because of this (see ‘Relationship with sibling’). 

Other more negative experiences people talked about included dealing with challenging behaviour, having to conform to rigid routines and rituals and the related constraints on family life (see ‘Going out’). In addition to these challenges, a few siblings had health conditions that were related to their experiences growing up with a sibling with ASD. These included both physical and psychological stress-related conditions such as Irritable Bowel Syndrome (IBS), panic attacks and self-harming through Compulsive Skin Picking (CSP). One person said that her health was affected by the situation leading up to her brother going to a residential school.

“It’s probably affected me more than I realise”
A few people also described being “frightened” and “scared” by their sibling’s tantrums when they were younger. Another said she has managed to cope well with life despite “being raised amongst chaos”. One young woman, who had both brothers and a mother with ASD felt that she was always trying to keep up with her family.

Last reviewed August 2018.
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