Having a sibling on the autism spectrum

Support

We asked people what support they had received when they were growing up, and what they would have liked. Several people were surprised by this question and said that they didn’t need support. Some people said they had friends they talked to, or that their family were very close. Some people had attended support groups, mostly young carer groups, and they enjoyed the opportunity to mix with people who had similar experiences to their own. Those who wanted support said that they would have liked someone to listen to them who understood their experiences.

“It is important for young people to have the opportunity to talk to other people that have similar experiences”
Some people met other siblings of people with autistic spectrum disorders (ASD), sometimes at school or college, but mainly at support groups. These support groups were for young carers, or groups that included disabled children too, and involved different activities or outings. A few people said that it was nice to spend time with people who understood what they were going through, even if they didn’t talk about their siblings. One person enjoyed feeling comfortable with people who were in the same boat. 

“I just wish there had been somebody who could have spoken to me and knew what they were talking about”
Having people to talk to who understood what it is like to have a sibling with ASD was very important to several people. One person had been given counselling at school, but said the counsellor was more used to dealing with divorce or bereavement and couldn’t really understand what she was talking about. Another said she would like more emotional support because “the anxiety and pressure in [her] house is too much sometimes”. She felt that she had no one to turn to. 

“I’ve got a good friend who I can turn up on their doorstep crying”
Several people said they got support from their family or from good friends. They didn’t feel any need for external support. Others said they would have liked some support, or at least to have the opportunity to have support if they needed it. A few reflected that there was very little support aimed at siblings, and one person felt that siblings were overlooked, as all the attention focused on parents. 

“They take a lot of the emotional strain”
Some people said they would like more support to be available for their parents rather than for themselves. They felt that their parents, in particular their mothers, took on significant emotional and practical responsibility for their sibling.

One older woman, who was her brother’s carer, said that the support available to carers was better than that offered to siblings. 

Last reviewed May 2015.

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