Having a sibling on the autism spectrum
In this section you can find out about the experience of having a brother or sister on the autism spectrum by listening to people share...
People described their relationships with their siblings. They talked about emotional and practical sides to their relationships and how these changed over time. People found similarities to typical sibling relationships, but also considerable differences, such as the level of responsibility they felt for their sibling.
Several people said that they had typical sibling relationships. Their sibling could annoy them to bits, but they were also very close. Many acknowledged that while their relationship is different in many ways than other sibling relationships, it was ‘normal’ to them. Their sibling’s behaviour could be unusual or unpredictable but they had grown up with them and so ‘had to get on with it’.
In terms of spending time with their siblings, people talked about different things including ‘just hanging out’, eating, tickling, playing computer games and going shopping together. Some younger siblings were in residential schools and a few people found visiting them there ‘a bit upsetting’. They preferred their sibling to come home.
Most people took on considerable responsibility for their siblings when they were growing up. Most talked about looking after them, or protecting them at school. Some helped their parents by stepping in and supporting their sibling, or by not making a fuss if something wasn’t going right for them. Many described a unique relationship with their sibling and were able to interact with them in a way that many other people couldn’t. For example, some had developed their own form of sign language, or had found particular ways of diffusing tensions, such as playing pool or watching films together. A few talked about ‘pushing the boundaries’ with their sibling and encouraging them to do new things. This included going out to different places, encouraging them to extend the range of music they listened too, or the television programmes they watched.
While some people said they were very close to their siblings, a few had very different experiences. They felt very distant from them and, as one person said, fought or avoided them. This was sometimes because the sibling was in a residential school or home and so their lives were not closely intertwined. One young woman said that she had become less accepting of her brother’s strangeness as she grew older and she was glad she would be able to leave home at some point. A few other people said they left home quite young ‘which says quite a lot’.
The biggest difference from many sibling relationships was that the relationship was one way; people were not able to share their feelings, confidences, worries or concerns with their sibling. This was because their siblings were only interested in specific things relating to their own interests, had not grasped the skills of social interaction, or were not able to communicate effectively with them. Several said that their siblings could be affectionate and loving, but not able or willing to interact with them in a way they would have liked. As one woman said, ‘I don’t get a, ‘Hi! How are you?’ He never, never asks about me at all, which hurts. Like, even though I know how it is, it still rankles’. Those people with only one sibling felt this more keenly. For example, one young woman said she was never really sure what to say if anyone asked her if she had brothers and sisters.
The difficulties some people experienced growing up often revolved around particular behaviours by their siblings. Some people reflected on embarrassing situations they had experienced in public places with their siblings. For example, one brother had a pathological hatred of Dora the Explorer which could cause some awkward encounters with children when he was out. A few were destructive and could break people’s possessions which they found upsetting or annoying. A few of the siblings could be aggressive or violent when they were distressed. One person recalled how, when she hugged her brother recently, he ‘bit her neck like a vampire’. She likened living with him to ‘living with a time bomb without a timer’. A few siblings were territorial over space and wouldn’t let anyone else in the living room (see ‘Organising family life‘).
A few felt they hated their sibling sometimes when they were growing up. They felt frustrated or distant from their sibling, though these feelings could cause them to feel guilty.
In terms of now, many people were in very different situations with their siblings. Some people were at college or working abroad, and so didn’t see them as often. This suited some people but not others. Others were still living at home with their sibling, and a few older people saw their siblings less frequently, as they were settled in independent supported living.
In this section you can find out about the experience of having a brother or sister on the autism spectrum by listening to people share...
The organisation of family life can be complicated when a family member is on the autism spectrum. Different aspects of family life, including routines at...