A-Z

Amy: Interview 12

Age at interview: 17
Brief Outline: Amy's younger brother, Harry, was diagnosed with autism approximately eighteen months ago. He is now eleven years old.
Background: Amy lives at home with her mum, step-dad and younger brother and sister. She is a full-time student. Ethnicity/nationality: White British.

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Amy has two younger siblings, Harry and Molly, to whom she is “quite close”. Her brother Harry has autism as well as severe learning difficulties. She described him as “very loving and affectionate”. She suspected he had autism after reading The Curious Incident of the Dog in the Night Time and so wasn’t surprised when the diagnosis was confirmed. However, she reported that her mum and step-dad were “sort of shocked by it”. 
 
Harry attends a special school and will not be required to take State exams such as GCSEs. As a result, Amy is concerned that he may leave school without any qualifications and so find it difficult to find employment. However, her greatest concern for him is that he may “stay at home forever”.
 
According to Amy, the most difficult thing about having a sibling with autism is that it is difficult to “understand what’s going on in their world”. She believes that the best thing about Harry is his laugh, which she describes as “the most infectious laugh in the world”.
 
Amy thinks that, as there is a great deal of information about the symptoms of autism on the internet, she would be interested to meet other siblings to “find out what it’s like for them”.
 
 

Amy explains that a family holiday with relatives was complicated by their attitudes to her brother.

Amy explains that a family holiday with relatives was complicated by their attitudes to her brother.

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Okay and what do you think that other people think about him?
 
I don’t know. I think, because all of the family know about him, but I think the ones, that, like obviously like cousins and aunts and uncles and stuff don’t, don’t understand as well as we do. So like when we went on holiday there were a couple of times when they were like, “Oh just, just play nicely, Harry.” Sort of thing, and it’s like well that’s just how he does play, that’s how he is, sort of thing. But, everyone’s accepting of him. There’s... but they just, because they’re not used to living with him, they don’t understand as well, I don’t think.
 
Okay and what do you think about that or how do you feel about it?
 
I don’t know. I think, I don’t want to say, “Oh don’t tell him how to do this, how to do that”, because not my place to say that to them really, but I just think well he’s only doing that because that’s how he is, that’s what he does sort of thing, but I just sort of get on with it, just… I don’t know.
 
 

Amy’s friends are good with her brother. His diagnosis did not “bother any of them”.

Amy’s friends are good with her brother. His diagnosis did not “bother any of them”.

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Do you ever have to explain Harry’s autism to your friends?
 
Yes, I did explain it. I mean when he was first diagnosed I said to all of them, oh, because they’ve all met him before. I said, “Oh, Harry’s been sort of been diagnosed…” But all my friends think he’s great, they think he’s really sweet. But yeah, none of them, it doesn’t bother any of them or anything. I still have them over and stuff. My best friend [friend’s name] really good with him, she loves him, and he loves her as well. He really likes [friend’s name].
 
 

Amy initially thought she would not like to have children, but changed her mind because of the...

Amy initially thought she would not like to have children, but changed her mind because of the...

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Yes, that’s what my initial thoughts were if, I thought, I don’t know, I think my views have changed. I thought at the time like if it was hereditary then I wouldn’t have children at all, but now, I think I would even if they were autistic. I think it would be okay, because, because of having Harry as my brother, I sort of like understand what it’s like, but yeah. So I think I would have children.

 

Amy’s views of having a child with autism have changed. She thinks it would be okay because she...

Amy’s views of having a child with autism have changed. She thinks it would be okay because she...

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Yes, that’s what my initial thoughts were if, I thought, I don’t know, I think my views have changed. I thought at the time like if it was hereditary then I wouldn’t have children at all, but now, I think I would. Even if they were autistic. I think it would be okay, because, because of having Harry as my brother, I sort of like understand what it’s like, but yeah. So I think I would have children.

 

Amy received support from her family and did not know that support groups existed. She felt she...

Amy received support from her family and did not know that support groups existed. She felt she...

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Okay and whenever he was diagnosed did you talk to anybody about that in terms of how you felt about it?
 
Other than my family, not really. But we all sort of discussed how we felt together but yeah, it wasn’t a big surprise. Like I said, I was, I had sort of been expecting it so… yeah.
 
And when you talked about it together what was the general feeling among your family?
 
Yeah, I think my mum especially was a bit upset about it, but everyone, everyone, no one was really, really shocked or like surprised that he was autistic. It was just a sort of feeing of well at least now we know what it is, why he behaves this way sort of thing. But yeah, I think it was, it’s been good since he’s been diagnosed because we can sort of understand him a bit better.
 
How did Rich feel about the whole thing?
 
I’m not sure. I don’t, I think he was surprised, but once you, once you get over the initial sort of sort of like the word autistic, I think it has, like almost a stigma attached to it, but once you get over that it was, it was fine really.
 
And what do you think your younger sister thought about it?
 
She was only seven when she was diagnosed I think, or eight. So I don’t think she really fully understood at the time, but like as she’s got older, she understands more and she’s I think she’s alright with it. I think she sort of looks after Harry. So it’s quite nice.
 
And have you ever attended a support group for siblings of people with autism?
 
No. I didn’t know there were such things.
 
And would you like some sort of support in dealing with all of it?
 
I think it would be interesting to talk to other people who are in similar situations, I think, yeah. That would be.
 
 

Amy would have liked to learn from others’ experiences.

Amy would have liked to learn from others’ experiences.

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I think if we met... sort of like, find out what it’s like for other siblings maybe of autistic sort of children. I think it would be interesting to, yeah, definitely find out what it’s like for them, because there’s stuff on the internet, like symptoms of autism and like that sort of stuff, but there’s not much about actual real lives to do with what it’s like to live with autistic people and like, to have an autistic brother or sister.

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