Having a sibling on the autism spectrum

Thinking about the future

We asked people how they felt about the future. Their thoughts focused on what their sibling’s future would be like, in terms of fulfilment and happiness, and what sort of role they themselves would play in their siblings’ life. Some also thought about their own future and the possibility of having children on the spectrum themselves. One person, who was slightly older, worried about what would happen to her sibling when she was no longer able to be his guardian. 
 
“I think the hope is that university will go fine”
It was difficult for the younger people we talked with to have a clear picture of the future, because they could not know how their siblings would develop. As one woman said, “It’s just like any fifteen year old person, he’ll grow up and change, and my expectations for his future will grow up and change as he does”. Some people were fairly sure that their siblings would need full time care in the future, particularly if they were already in residential care of some sort. Other people were less sure about this; they felt there was a possibility that their sibling could live independently, but it was very uncertain. As one woman said, “it’s not the same as caring for a kind of profoundly disabled person or something”.
“I’d rather live in the present; it’s alright at the moment”
A couple of people said they didn’t worry about the future; they recognised that there may be some implications for them, in terms of care or responsibility, at some point in the future, but while they were young, and their parents were still young, it was not something they worried about. 
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“It’s a constant worry, definitely”
Most people, however, said they did worry and, for a few, it was a constant worry that rendered the future “scary”. These worries were both broad worries and more specific worries. For example, people worried about what sort of future their sibling would have, the lack of available support or appropriate provision, and whether or not autistic spectrum disorders (ASD) were hereditary. More specific worries included how their sibling would cope with the death of their parents, and what would happen when their parents or parent could no longer care for them. A few said they worried about the impact of long term care for their sibling on the health of their mothers.
A couple of people tried to teach their sibling self-help skillslike budgeting, cooking, washing and clearing up. A couple of people felt strongly that their brothers ought to be more independent than they were. 
“I’ve reconciled that my brother will always be a very prominent part of my life”
Some people knew they would be responsible for their sibling in the future and, in some cases, become their legal guardian. Some accepted this and were either happy, or at least resigned, about their role. They anticipated living close to their sibling and being responsible for them. As one woman said, “I’ll always have to put aside some of social life to deal with things”. Others found this prospect “daunting” and were concerned about what sort of level of support their sibling may need. Some felt their mothers provided a level of care that they may not be able to match. They also thought about the implications of this responsibility for their own families and their working lives.
Some people thought about the best living arrangement for their siblings in the future. A couple of older people had adult siblings who already had established living arrangements; one brother lived in a small supported living community, while the other one lived on his own but with support workers coming in on a daily basis. One woman said she worried about her brother going into residential care as an adult because she didn’t think that adult care was as good as “school care”. 
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“I would hate to take over the care my mum gives”
A few people didn't want to be responsible for their sibling in the long term and didn't see why they should be. One woman said that she would hate to become responsible for her brother and was glad that she was able to walk away from it all by leaving home. She thought that if she got married and had a family, it would be unfair to them if she was also responsible for her brother. In part, these feelings reflected her experience of growing up with him.
“I don’t know whether I want to have children”
Many people had thought about the possibility that ASD was a hereditary condition. They thought about what this might mean in terms of having children of their own. Several had decided that they didn’t want to have children because they worried their children may be on the spectrum. Their experience of growing up with their sibling meant that they had an understanding of what life was like for family members. 
A few people said the opposite, i.e. having children of their own with ASD wouldn't bother them because they knew what it was like.
Last reviewed May 2015.
Last updated May 2015.
 

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