Having a sibling on the autism spectrum

Organising family life

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 home, going out, mealtimes, family holidays and the organisation of the family home, were discussed, with the overriding emphasis placed on need to try to maintain routine and reduce anxiety for their siblings.

“Some of the time we were treading on egg shells”
The greatest constraint on family life, for many people, was the importance of sticking to the siblings’ routines. People with autistic spectrum disorders (ASD) may depend on routines and rituals to minimise their anxiety. A break in routine can cause great distress, which, in turn, can complicate family life. Several people said that, as a family, they tried to accommodate their sibling’s routine. As one person said, “It was just the way everyone has to think of him and put him first, before anyone else, because he needed it”. This could cause tensions and pressure within some families leading to arguments. Some people reflected on how they learnt to put their brother first, after some initial resistance when they were younger.

“My parents didn’t want to take him out”
Several people talked about the difficulties they had going out to different places with their siblings. Leaving the house to go to the shops or on family outings could be difficult. Again this was often related to their sibling’s strong need for routine and dislike of unfamiliar places. Their siblings often had rituals and obsessions that could be very constraining for other family members. As a result, outings were often focused on the siblings’ interests or were age appropriate to their sibling, which could be difficult for them. 

Others explained that going out wasn't easy because they worried about how their sibling would behave and how other people present would react towards him or her. Some people stopped going out as much because of their siblings’ ‘meltdowns’, but this suited some siblings who were very happy to stay at home. 

“We would need a holiday after the holiday”
Going on holiday was another aspect of family life that could be less than straightforward. The disruption to routine could be difficult for their siblings to cope with and holidays took a lot of planning. The destination was sometimes related to the siblings’ interests, again to minimise tensions, and a few people said they were unable to travel abroad. One person said that her family could “never take [her brother] on holiday” while another said that her brother insisted that they do the activities he likes because his benefits had contributed to the cost of the holiday. Going on holiday with extended family members who do not understand ASD was also difficult.

A couple of the people said that they no longer wanted to go on family holidays. For one, this was because she was bored of doing the activities her brother wanted to do. Another who described herself as a 'control freak', found it difficult to deal with her parents being so disorganised.

“Meal times will probably cause an argument”
Some people said that mealtimes could be difficult. One said this was because the range of foods her brother ate was limited due to his sensory sensitivities and she would feel “kind of rejected” if he didn't eat the meals she prepared. Another felt that dinner time should be a social time for the family but her brother didn’t want be part of after-dinner family chats. She said that “everyone misses out because we’re not spending time with each other”. Mealtimes could also be difficult because of the need for routine. 

“You couldn’t leave any lotions in the bathroom”
The organisation of home space and belongings was something a few people talked about. Some of the siblings were territorial and would dominate a particular room in the house, such as the living room. Katherine’s brother would retreat to his room for long periods of time and only speak to her mother. This could create an atmosphere throughout the house. One person recalled feeling stressed when she was growing up because of the number of support workers coming into her home for her brother who needed a lot of care. She found this disruptive and intrusive.

Other people had to hide things like CDs, DVDs, liquid soap and toothpaste because their siblings would destroy them or make a mess. While some people were used to how things were, a couple said they would like to separate themselves more from their families. One said that she “can’t wait to move out” and get away from her brother “because he distresses the family”. However, others felt very strong ties and responsibilities towards their family (see ‘Thinking about the future’).

Last reviewed May 2015.
 

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