Having a sibling on the autism spectrum

Information

Information about health conditions can be important to some people; answering questions and providing them with reassurance. The people we talked with had different feelings about information relating to autistic spectrum disorders (ASD). Some were very keen to find out as much as they could, while others felt that they didn’t need to read anything about it because they lived with someone on the spectrum. Some people said they would have liked information aimed at siblings when they were growing up. 

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Parents were often the main source of information, either directly through giving them relevant books to read, like My Brother is Different, or indirectly through hearing autism talked about at home. Some people said they tried to read books they found lying around at home when they were younger, but these were difficult to understand as they were aimed at adults. One person didn’t want to bother her parents with her queries because she didn't “want to get in the way”, so she read what she could find.

Other sources of information were school or college, the internet and talking to other siblings at support groups. One person found information on the internet was “quite biased” and she didn’t know how reliable it was. Several people had read 'The Curious Incident of the Dog in the Night Time'. One person read this with her class and was able to use the opportunity to tell her friends about her brother’s autism while another person questioned whether her brother was autistic after reading it. 

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One person, who worked as a health professional, kept up-to-date with current ASD research by reading journal articles. She said it was “nice to be able to read from a personal interest of my own, and to develop my work knowledge at the same time”. Another said that her brother made her read information he found on the internet. She felt that it both reassured and helped him, but again questioned the reliability of online information. 

The type of information people wanted varied. Some wanted to hear other experiences of living with a brother or sister on the autism spectrum, while others wanted more factual information, such as books by Tony Attwood. 

Several people said they would have liked more information during their childhood, or at least have it available if they wanted it. One person said she would have liked information about different periods in her brother’s life, such as puberty or becoming an adult. One person described the information available to her as “condescending and embarrassing” and another said that what she read was “too in-depth” for a child. The sibling section on the NAS website was more about autism than Asperger syndrome and so less relevant to one person.

The reasons for seeking information varied; some wanted to gain a better understanding of why their sibling did the things they did and wanted to try to work out which bits of their siblings’ behaviour could be characteristics of ASD. A few people wanted to gain knowledge about ASD because they felt responsible for educating others, such as teachers, relatives and friends, about the condition. One person read more about Asperger syndrome when he started his job as a Learning Support Worker, whilst another searched for information about autism when her daughter began to display what she thought were autistic behaviours. Others felt reassured hearing about other siblings’ experiences and realising that there were other siblings with similar experiences.

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The desire for information changed over time; some felt they had reached a point where they didn’t need to learn any more. This was particularly the case for people who no longer lived with their siblings.

“You have to live with it to understand it”
Some people had no interest in information about ASD. They felt that the autism spectrum contained such a range of different people that information would not be relevant or useful to them. As one person said, “information would miss out all the little bits... it can’t tell you what your brother or sister’s little rituals are”. Some also felt that knowing more about ASD could not change anything in their lives. It would not change the way in which they treated their brothers and it would not change the fact that they had autism. 

Last reviewed May 2015.

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