Having a sibling on the autism spectrum

Jenni: Interview 13

Age at interview: 18

Brief outline: Jenni's younger brother was diagnosed with autism and has challenging behaviour and learning difficulties.

Background: Jenni, 18, lives with her parents and is a student. Ethnicity/nationality: White British.

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Jenni’s younger brother moved to a residential school when he was 10 and she now sees him once a month. He was diagnosed with autism and has learning difficulties and challenging behaviour. For four years, before leaving home, he took over the living room and wouldn’t let Jenni in there. He also dictated how much the family could come and go because he was very rigid in his expectations. Growing up with him Jenni likens to “living with a ticking bomb without a timer” as her brother could be physically aggressive towards her or her mother. At the time, while she realised that her home life was different to many other children’s, she didn’t think much about it because it was ‘normal’ for her.
Jenni’s mother was ill with a brain tumour when she was pregnant with her brother, and Jenni’s dad took on the responsibility of looking after them all, and having a full time job. The impact of this on her parents was more significant than she realised at the time and, in some ways, Jenni regrets being an “angsty child”. Jenni dealt with her home life by spending a lot of time with her imaginary friends and being a bookworm.
Now, when her brother is home, Jenni describes how she stays out of his way and he stays out of hers; “kind of like a normal brother sister thing, just without speech”.  Jenni explains how there are times when she despairs and feels desperate when coping with her brother, but she then accepts that it’s not all that bad, she can cope and it could be a lot worse.  
We also spoke to her grandparents about their experiences. (See Brian and Lucy’s story)


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