Having a sibling on the autism spectrum

Anne: Interview 04

Female
Age at interview: 54

Brief outline: Anne's brother is fifty-one. He was diagnosed with Asperger syndrome thirteen years ago. She has been his carer since his diagnosis.

Background: Anne lives at home with her husband. She has three children, one of whom has been diagnosed with a learning disability. Ethnic background: White British.

Audio & video

Anne became aware that her younger brother was “different” when she was about six or seven. She noticed that he did not laugh or smile frequently and did not share many of her interests. She describes him as a “reasonable playmate” and recalled how they would have played board games and gone off on adventures in the countryside as children. She felt that when they played together he never really got into make-believe roles and she often had to compensate and play both parts. 
 
According to Anne, her father could not “work out” her brother and, consequently, spent more time with her than he did with her brother. He took her to watch cricket and to do things that a father might normally do with his son. As a result, she felt that she “was almost like a stand-in son”. Anne said this later changed when she moved away from home to get married, as her mother began to encourage the relationship between her father and brother.
 
Anne became her brother’s carer after their parents died in 1996. She organised the purchase of a flat for him in his home town. A year later, he was diagnosed with Asperger syndrome by his care manager. She described getting the diagnosis as like a “light bulb” coming on. However, she says that it is sometimes difficult to ascertain what behaviours are attributable to his condition or personality. 
 
Anne’s brother is getting increasingly more anxious as he gets older and that he says he would like to be more “sociable”. However, she explained that he refuses to get involved in pre-organised social activities if he has already got “stuck into something” else. Anne’s brother never criticises her and sends her flowers on Mother’s Day.
 
Anne described her experience of being a carer as frustrating. She feels that she has to provide the experts with information when it should be the other way round. She believes her experience could be improved if she only had to deal with one person who could coordinate her brother’s needs, rather than having to speak to many people from different agencies.
 

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