A-Z

Katherine: Interview 10

Age at interview: 21
Brief Outline: Katherine's older brother, 25 was recently diagnosed with Asperger syndrome.
Background: Katherine, 21, lives with her parents and her brother. Ethnicity/nationality: White British.

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Katherine, 21, lives with her brother, 25, and her parents. Her brother has had a series of diagnoses, including OCD, since childhood and was recently diagnosed with Asperger syndrome. While Katherine describes her family as very close, she also says that she has become less accepting of his “strangeness” as she has grown older and is beginning to become more resentful of the impact of his behaviour on the rest of the family.
 
Katherine’s brother spends long periods secluding himself in his bedroom and these periods involve Katherine’s mum as she has to care for him. When his mood lifts and he comes out of his room, Katherine describes positive times as he is much happier and more sociable. But Katherine says that she “doesn’t like his highs because I know that there is an impending low”. 
 
These patterns of behaviour have made it difficult for Katherine to have her friends around as much as she’d like. She talks about her brother to her friends but doesn’t disclose the full extent of his unusual behaviour because she knows her brother would feel uncomfortable about this. Katherine is aware that she can move away from the family to lead her own life, but is concerned about the long term impact on her parents if her brother is unable live on his own in the future. 
 
There have been some positive things about growing up with her brother, including learning to be by herself and developing an understanding of how to help other people.
 
 

Katherine’s brother can create a barrier in their family as “it’s all on his terms”.

Katherine’s brother can create a barrier in their family as “it’s all on his terms”.

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When he’s bad. When he’s in a low mood or something or locked away in his bedroom because he won’t see my dad or I, he won’t interact with us, he lives through my mum. So she’ll be supporting him but at the same time as her being his support, while he’s letting my mum in, he’s also putting up a barrier in between my dad and I. So he kind of has decided this barrier for the family, or a wall within the family and it’s very much on my brother’s terms. And when he’s down my dad doesn’t like it because of the effect it has on my mum and I also don’t like it for that. But he has more trouble with it, because, I don’t know, the distress that we can see that he’s causing my mum is bad. So when [brother’s name]’s happy the family is better. It’s nice to have him round the house again, but yes, the family’s mood is quite determined by my brother.

 

Katherine’s friends think she is “wrong” and “cruel” in her descriptions of her brother, but they...

Katherine’s friends think she is “wrong” and “cruel” in her descriptions of her brother, but they...

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Oh they’re really confused because when I describe him they, they think I’m wrong, I’m being cruel speaking of him how I describe him. And I have to explain that whenever they see him or they’re invited into the house, they see him when he’s happy and friendly. They don’t see the stranger sides because it would be cruel to have them around. So they don’t really understand properly where I’m coming from. Occasionally, as I said, I’ve got a very close friend who knows everything. Occasionally he gets a snippet of my brother’s strangeness. Years and years ago it was cold one night and we went to sit one play swings in the village, and I went into my brother’s wardrobe and got my friend a jumper. He wore the jumper and came back, and my brother was furious and shouted at me that having done that very loud. I laughed and said if I had asked he would have no or something like that. And just occasionally they will get a peek at what I’m talking about that makes them realise that this is not quite normal.

 

Katherine says that there is a need in her to help people.

Katherine says that there is a need in her to help people.

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Yes. Yes, I think, it’s funny there are a lot of positive things. Perhaps the biggest is that I’ve learnt to be by myself and to help people. You said other people in your study are thinking of career choices that could help others and I think that’s in me as well. A sort of need or understanding of how to help people. Like of my group of friends, tend to be the person people sit down with. 

 

Katherine was unsure of the hereditary nature of ASD and discussed it with her friends. She would...

Katherine was unsure of the hereditary nature of ASD and discussed it with her friends. She would...

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Yes. I said to my friends, and they say “Why would they?” Yes, that would petrify me. I don’t know what I’d do because its strongly influenced my … I’d really have to consider having children. I don’t know how hereditary - is that the word? - It is. But if I had a child that ended up like my brother I’d want to smack myself, and it’s something you can’t predict, and I’d hate to feel that disappointed in the child, because I know that’s what I would have been doing. If I’d known that there was that possibility. So to have a child with that in mind and then if became true, I’d feel terrible about having the kid, which isn’t what everyone wants.

 

Katherine would not like to “take over the care” of her brother because of the negative...

Katherine would not like to “take over the care” of her brother because of the negative...

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We’ve talked about this as a family. I’ve said I won’t. I don’t want to do that. He has visions of perhaps moving in with me or having an annex on top of a garage. I’ll live with my husband and children, and he will live above the garage on his own. And I don’t want that at all.
 
Why is that?
 
I would hate to take over the care my mum gives. And if I had a family, I’d hate to inflict it on them when it’s been such a negative thing in my life. I don’t have to. I’d just like him to want to live a life or to move out of the family. Go and live with friends...
 
 

The thought of having a child like her brother “petrifies” Katherine.

The thought of having a child like her brother “petrifies” Katherine.

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Yes. I said to my friends, and they say “Why would they?”, yes, that would petrify me. I don’t know what I’d do because its strongly influenced my … I’d really have to consider having children. I don’t know how hereditary - is that the word? - It is. But if I had a child that ended up like my brother I’d want to smack myself, and it’s something you can’t predict, and I’d hate to feel that disappointed in the child, because I know that’s what I would have been doing. If I’d known that there was that possibility. So to have a child with that in mind and then if became true, I’d feel terrible about having the kid, which isn’t what everyone wants.

 

Katherine thought that her family and friends gave her enough support. She was unsure what type...

Katherine thought that her family and friends gave her enough support. She was unsure what type...

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None. My family’s enough, or family and friends. But I’m sure there are families that the siblings could benefit from some sort of help. I don’t know what help they could give them because it’s the kind of situation that can’t change. It’s something you’ve just got to grow with and learn from. I’m sure people might do with help. But as I say I’ve learnt as I’ve grown up with it, how to be around it. What to do.

 

Katherine thinks reading about autism would be unnecessary as she has got a case study at home.

Katherine thinks reading about autism would be unnecessary as she has got a case study at home.

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I think it doesn’t matter what people tell me. It feels that I’m living with the person, so, if I was to read a book or go on the internet and they told me how I should be around, I don’t know what information I could gain that would help. They couldn’t tell me how to be with him or what could be helpful, because I’m the person, I’ve grown up with him. And he’s older than me, so he’s always been there. So there’s nothing new I could learn. And I suppose it’s something that’s different for everyone as well. So I’d been reading about something quite generalised instead of something specific to my brother, which couldn’t be helpful. It would just be teaching me about a problem that people have, when I’ve got a case study. So it’s unnecessary I think.

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