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Steph: Interview 05

Age at interview: 26
Brief Outline: Steph's brother, aged fifteen, is eleven years younger than her. He was diagnosed with autism when he was approximately two years old and lives at home with their parents.
Background: Steph is a speech and language therapist who lives with her boyfriend. Ethnicity background: White British.

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Steph has a close relationship with her brother who was diagnosed with autism when he was approximately two years old. He is now fifteen and lives at home with their parents. She lives close by. She recalled feeling “horrified” when she found out her mother was pregnant with her brother as she had been the only child in her extended family for about nine years. She explained that this was more difficult than finding out about his diagnosis, which she was quick to accept, although, at first she did not have a great understanding about what autism means. She feels that her knowledge has grown and developed over the years through spending time with her brother.
 
Steph and her brother are fairly close despite the eleven year age gap between them. They spend time together every Saturday and he comes to stay with her once a month. She says she encourages him to try new activities. For example, they watch DVDs together, which he does not do at home as it is not part of his routine. She has worked hard to ensure that their relationship changed as they got older and that they do “things that normal fifteen year old boys would do”. She helps him to buy fashionable clothes as she wants to ensure his life is as normal as possible and does not want others to negatively “prejudge” him.
 
Steph believes that her experience with her brother has made her “a nicer person”. It also influenced her choice of career; she works as a speech and language therapist. However, she sometimes feels unhappy and wonders about “the sibling that he would be if he didn’t have autism”. Over the years Steph has gathered a great deal of information about autism. She keeps up to date with current autism research.
 
 

Steph says that she and her family “work round” her brother’s need for routine.

Steph says that she and her family “work round” her brother’s need for routine.

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Because, because of the level that [brother] is at. He’s not he’s not high enough level to be able to kind of rationalise, well alright I’m going to so-and-so’s house. Mum says I’ll be okay, Steph says I’ll be okay. I know what I’m going to do. But he’s far too high a level to kind of think, to kind of not be aware of where he’s going. He knows exactly where he’s going, exactly what he’s doing. And his anxiety will raise as soon as it’s something different and because myself and my family want him to be calm and settled and happy, we have to work around that all the time, because it’s unfair not to, because if not that’s when he becomes distressed and I don’t think that me, mum, Dad could live with him being distressed because of something that we wanted to do.

 

Steph talks about choosing her career in speech and language therapy.

Steph talks about choosing her career in speech and language therapy.

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Do you think that his diagnosis had anything to do with your choice of career?
 
I think because of James’s diagnosis I’m probably a better person in lots of ways. I have learnt to value every young person with a disability as someone that’s absolutely loved and valued by their family. So I would say it must have because we’d never known what a speech therapist was, until James had one. And there weren’t many speech therapists about when I was little or when James was little, so my mum grew her own. We kind of looked at what I could do, and what I liked and kind of thought, yeah, that seems like a nice thing to do. Because we’d obviously, we knew ours and we knew what kind of things she did and I enjoy working with young people with autism, because I think I know what’s going on and it doesn’t surprise me when they do things that it would maybe surprise other people, and I’ve actually worked with young people with autism since I was sixteen, so before I’d chosen my university degree qualification. So, yeah, I think it absolutely has.
 
 

Steph was surprised to come across someone who thought autism was caused by bad parenting.

Steph was surprised to come across someone who thought autism was caused by bad parenting.

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I don’t think problems. I think I’m occasionally surprised by attitudes and opinions around disability in general. I know...Because I value young people, well I value people so much, whatever their levels and whatever their abilities are and whatever the skills are, it can sometimes come as a surprise to me when people don’t, when people are rude, and that can be surprising and sometimes quite hurtful, even though they’re not saying it about my brother. I think it kind of, it reflects on me like that. I came across a girl not so long ago that asked me what autism was caused by, and if it was due to bad parenting. And she didn’t know that I had a sibling with autism, but it still absolutely surprised me that people still had this thought, this thought and opinion that that’s what it might be, and I was kind of, oh, oh, I thought we were past that. And I wasn’t upset or angry or anything like that, but I was just very surprised and, and kind of re-educated them and kind of said, “Oh no, this is what it is. It’s genetic. It’s, you know, there’s difference in brain chemistry, there’s difference brain structure, that kind of thing. You know, children with autism, it’s a lifelong learning condition, that kind of thing. So I don’t think I ever been, I don’t think I’ve ever come across anything very negative. I’ve been surprised. I’ve had to re-educate people. I’ll always, if there’s a reason to I always say, “I have a sibling with autism.” 

 

Steph had researched her chances of having a child with autism but wasn’t thinking about having...

Steph had researched her chances of having a child with autism but wasn’t thinking about having...

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I don’t know whether I want to have children. Because not because of James, but I have a one in twelve chance of having a child with autism, because of the genetic relationship I have. And I can’t, I think that would be very difficult for, to deal with. But at the same time, I don’t think I’d have had children at this age anyway, because I like to spend my money on mini breaks.
 
How do you know that you have a one in twelve chance of having a child with autism?
 
How big headed am I going to sound? I know a lot about autism' because of having a sibling with autism; because of being a specialist speech and language therapist dealing with children with autism; because I’m interested in autism, I do a fantastic amount of reading. And while other people are sitting reading kind of Heat magazine on the train, I usually have some kind of autism journal in my bag, because I’m very weird like that and probably slightly obsessive. And I know the genetic relationships. And I know because I have a sibling with autism … The general... the Bird Study in 2006, was it? Eh, there’s one every one hundred and twenty five people in the UK that are given a diagnosis of autism spectrum condition. Not core autism but an autistic spectrum condition, and I have a one in six... My chances of having a child with autism are six times that of the general population because my sibling has autism. So if you just do that maths, that’s a one in twelve chance of any child I have being affected by autism spectrum condition. Not that I would be horrified to have a child with autism, because I wouldn’t. But I kind of think because of, it would, it makes me think. It’s not that I don’t want to have a child or, apart from I don’t want them to take away my mini break money, and it would terrify me, because I’m so incredibly immature anyway. But I think it would be, if there was a time I was ready to have a child, it would be something I thought about and it would have to kind of look at the research and the evidence that was out at that time and kind of think, well, what are my likelihood and how can I decrease it if there’s any way? And that kind of thing. So … it’s not something that affects me right now. But it might affect me in the future.
 
And you obviously didn’t go the doctor to get tested for your likelihood of having a child with autism?
 
Oh no. There’s no kind of, there’s no kind of genetic testing available for autism at all at the moment. Most children that are given a diagnosis of autism are tested for Fragile X syndrome to make sure that it isn’t that genetic condition, which I think does have inherent patterns, but I’m not sure. But, while there are studies looking at kind of the genes for autism, and the genome for autism, and there are twin studies and siblings’ studies going around the genetics in autism, there’s no kind of test available at the moment. It’s something that...It might change. You know, it might change before I have children or before I think about having children. But certainly in the here and now, that’s not an option.
 
And this thinking about you possibly having a child with autism, was that something that you thought of and then decided to look into or was it just something that just came up in your reading and then you thought oh that might apply to me? 
 
It’s something that I think I was in a seminar one day, looking at the genome, at the causes of autism, and I kind of just worked it out and filed it away in my head, that this, as I say, I’m not massively child-orientated. If you see me at work with a baby, I’m quite
 

Steph is “reconciled” with the fact that she will be her brother’s carer in the future.

Steph is “reconciled” with the fact that she will be her brother’s carer in the future.

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I’ve reconciled with that. And kind of longer term, which I’m sure people think, other siblings think about as well, is I’ve reconciled that, I will have James’s care once my mum and dad are too old as well. Or my mum and dad are ill-health and once they pass away, I’ve reconciled that James will always be a very prominent part of my life. So he’ll always I’ll always live near where he lives. I’ll always have to put aside some of my social life to deal with, you know, things. Don’t get me wrong, at the moment, you know, I’m out tonight, I was out last night [laughs]. It doesn’t impact greatly, but I know that at some point it probably will, and that’s okay, because, you know, I think once I got to kind of fifteen or sixteen, I’d kind of had an inkling of that’s, you know, that’s what would happen, and, I’ve had, what, twelve years to come to terms with it, and it’s okay.

 

Steph doesn’t know if she will want children in the future but she has researched the risk of her...

Steph doesn’t know if she will want children in the future but she has researched the risk of her...

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I don’t know whether I want to have children. Because not because of James, but I have a one in twelve chance of having a child with autism, because of the genetic relationship I have. And I can’t, I think that would be very difficult for, to deal with. But at the same time, I don’t think I’d have had children at this age anyway, because I like to spend my money on mini breaks.
 
How do you know that you have a one in twelve chance of having a child with autism?
 
How big headed am I going to sound? I know a lot about autism' because of having a sibling with autism; because of being a specialist speech and language therapist dealing with children with autism; because I’m interested in autism, I do a fantastic amount of reading. And while other people are sitting reading kind of Heat magazine on the train, I usually have some kind of autism journal in my bag, because I’m very weird like that and probably slightly obsessive. And I know the genetic relationships. And I know because I have a sibling with autism … The general... the Bird Study in 2006 was it? There’s one every one hundred and twenty five people in the UK that are given a diagnosis of autism spectrum condition. Not core autism but an autistic spectrum condition, and I have a one in six... My chances of having a child with autism are six times that of the general population because my sibling has autism. So if you just do that maths, that’s a one in twelve chance of any child I have being affected by autism spectrum condition. Not that I would be horrified to have a child with autism, because I wouldn’t. But I kind of think because of, it would, it makes me think. It’s not that I don’t want to have a child or, apart from I don’t want them to take away my mini break money, and it would terrify me, because I’m so incredibly immature anyway. But I think it would be, if there was a time I was ready to have a child, it would be something I thought about and it would have to kind of look at the research and evidence that was out at that time [laughs] and kind of think, well, what are my likelihood and how can I decrease it if there’s any way? And that kind of thing. So … it’s not something that affects me right now. But it might affect me in the future.
 
And you obviously didn’t go the doctor to get tested for your likelihood of having a child with autism?
 
Oh no. There’s no kind of, there’s no kind of genetic testing available for autism at all at the moment. Most children that are given a diagnosis of autism are tested for Fragile X syndrome to make sure that it isn’t that genetic condition, which I think does have inherent patterns, but I’m not sure. But, while there are studies looking at kind of the genes for autism, and the genome for autism, and there are twin studies and siblings studies going around the genetics in autism, there’s no kind of test available at the moment. And it’s something that it might change. You know, it might change before I have children or before I think about having children. But certainly in the here and now, that’s not, that’s not an option.
 
And this thinking about you possibly having a child with autism, was that something that you’d thought of and then decided to look into or was it just something that just came up in your reading and then you thought oh that might apply to me? 
 
It’s something that I think I was in a seminar one day, looking at the genome, at the causes of autism, and I kind of just worked it out and filed it away in my head, that this, as I say I’m not massively child-orientated. If you see me at work with a b
 

Steph had a lot of family support, but thought a support group would have been a helpful source...

Steph had a lot of family support, but thought a support group would have been a helpful source...

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What support did you have at the time of his diagnosis?
 
Personally, only my family support. As I’ve said before my family are very close. And I had lots of support from my family. But I think being fourteen and being surrounded by friends that didn’t know anything about autism, I didn’t get that kind of support. But that was it.
 
And did you have any other support apart from your family in the interim between the diagnosis and now?
 
No. I’ve had at university and at work, I’ve had colleagues that know things about autism and are interested and will talk to me, and will kind of go “Oh”, and it’s nice to have an educated talked about autism with someone apart from a family member, but nothing kind of professional apart from that.
 
And looking back to when you were fourteen at the time you found out about his autism, what information and support do you think you would have wanted then?
 
I know now there are sibling groups and I don’t know whether I would like to attend a sibling group. But I think it would have been nice to have the opportunity to attend a sibling group and make that kind of decision. I know the NAS do lots of books for siblings of autism now, and it would have be, it would have been nice to have that opportunity to be able to access them. Because even kind of referencing back to something I said earlier when I said my Mum gave me some information about autism, that wasn’t kind of what it was like to be a sibling of a person of autism, that was just autism information. It would have been nice to have the opportunity and the access, but I don’t think, I don’t know whether I would have taken it up, again it’s with hindsight, you know, what can you do? But I think it’s important for young people to have the opportunity to talk to other people that have similar experiences, but saying that my experience would have been so different from somebody else’s experience that, you know, I’m not sure, anyway.
 
 

Steph had to educate a school friend about what autism was.

Steph had to educate a school friend about what autism was.

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I can remember one of my friends at school, because I’d started to be kind of to be open and honest about, you know, James has been given a diagnosis of a learning disability, of autism, and you know, saying to my friends, “Oh James has got a disability. James has got autism.” And one of the girls saying, “Well he’s not properly disabled.” And I can remember kind of coming back and saying, “Well what do you mean?” And she said, “Well he’s not in a wheelchair.” I said, “But children with autism don’t even sometimes talk and sometimes don’t even get toilet trained”. And I can remember kind of trying to change people’s opinion about autism then, so I must have known some things. I must have been learning some things. I don’t know whether that’s just what Mum and Dad were telling me or just kind of what I was absorbing as well.

 

Steph says that having a brother on the spectrum is “not bad” it just means that daily life ...

Steph says that having a brother on the spectrum is “not bad” it just means that daily life ...

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It’s not bad, it’s just different. It just takes a little bit more thinking about and preparing to do things than I think it would normally. I’m not going to say it’s incredibly rewarding, because I’m sure it’s rewarding for other people that have siblings too. My relationship with my brother’s rewarding, but I think that’s because it’s my relationship with my brother, it’s not a relationship with my autistic brother, but yes it’s just different. It takes a little bit more time. It takes a little bit more planning. And it’s certainly not positive or negative; it’s just a thing that happens.

 

Steph is very close to her brother, who has “profound autism and a language disorder”, and enjoys...

Steph is very close to her brother, who has “profound autism and a language disorder”, and enjoys...

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Yeah, we’re really close. We tend to go out together on a Saturday. So after this interview we’re going out to [city name] for the day, and we, I think we have quite a normal brother-sister relationship, even though James does have quite profound autism and does have a language disorder as well. You know, we do things like go shopping together, we choose his clothes sometimes. We go out for a takeaway; we go to a restaurant and that kind of thing. We can’t do the things that he doesn’t like to do because of his autism, but yeah, we have a fairly normal, I would say, brother-sister relationship. 

 

Steph has made sure that her relationship with her brother has changed as he’s grown older. She...

Steph has made sure that her relationship with her brother has changed as he’s grown older. She...

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Has your relationship always been the same with him? Or how has it changed throughout the past twelve years?
 
Oh I think it’s changed in kind of terms of he was my little brother and we did things like we’d go to the swings and we’d go to the park. And like any kind of brother-sister relationship as he’s grown older, we’ve done different things, and you know, as his needs, his wants and interests have changed, so what we’ve done together has changed. So we now programme his iPod and listen to music in the car, and watch DVDs and go up the take up away, whereas we wouldn’t have done that five years ago. We’d have gone to McDonalds, and you know, maybe gone to buy him a new toy. So it’s changed, like all relationships change. And I’d say as he’s got older, I’ve worked hard to kind of reconcile, to make sure that I’ve moved on as he’s moved on as well, so I don’t view him as my little, tiny brother all the time, because he’s six foot three now and that would be strange. And he’s dwarfing me. So I think that’s something that I’ve really tried and had to work hard not to baby him, not to kind of make his autism an excuse for our relationship to kind of stay at an early level, but we’ve worked hard to make sure that we do things that normal fifteen year old boys would do and that… you know, that we can do together. So I think that’s something that’s changed in a very normal way.
 
 

Steph has thoughts about the future, rather than worries.

Steph has thoughts about the future, rather than worries.

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Obviously I have concerns about my parents getting older and their health if, because whatever happens to them although, obviously it emotionally impacts me, it practically impacts me as well. So, at any time in theory, my parents are in very good health now, but kind of, fifteen, twenty years time, if they’re not practically, if one of them becomes unwell, it will impact me in my work or my boyfriend’s ability to work or whatever. But I suppose it’s kind of, I don’t worry about the future. I just kind of think, if you plan for it, and be sensible about it, what will happen, will happen. Kind of where, where will he live? Will he live with my live with my mum and dad? Probably. Will he live with me? Possibly not, because he doesn’t like me that much. He likes me in very small doses, not long doses. Or he live independently, which will be wonderful, but would be a lot of work for him, a lot of work for my mum and dad, work, well not, some work for me, but to work for Services. So I don’t think they’re worries. I think they’re thoughts for the future. I don’t think I’d sit and worry about the future. Obviously when my mum and dad are either too old or too poorly to look after [brother’s name], I have that recognition that I will take a greater part in his care, but that doesn’t work really. It’s just a recognition.
 
And what will you things will be for him in the future?
 
I really, really don’t know. He’s quite stubborn, but clever young person. He has lots of skills. He can be an absolute delight or he can be a bugger. Depending on his mood. And I will say that of me as well. I can be delightful. Or I can be a bugger as well. So I just kind of think how many people at fifteen know what they want to do anyway? I’m fairly sure I didn’t. So I don’t know. I really don’t know. I think we can only see by watch and grow, watching what he does. What … how many more skills will he get? And what likes and interests will he get, because he really likes Take That and Girls Aloud now, but what happens if he doesn’t like that Take That and Girls Aloud? What happens if Gary Barlow’s not his role model next week? You know. So I don’t know. It’s just like any fifteen year old young person he’ll grow up and change and my expectations for his future will grow up and change as he does too. 
 
 

Steph can remember “forming an opinion about what autism was” when she was a child, but doesn’t...

Steph can remember “forming an opinion about what autism was” when she was a child, but doesn’t...

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So I can just remember forming opinions. I can’t remember where they came from. I’m sure they’ve grown up and changed all the time, of course they will have. But I mean general opinions about autism have grown up and changed in the last twelve years anyway. 

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