Having a sibling on the autism spectrum
Information
Information about health conditions can be important to some people; answering questions and providing them with reassurance. The people we talked with had different feelings about information relating to autistic spectrum disorders (ASD). Some were very keen to find out as much as they could, while others felt that they didn’t need to read anything about it because they lived with someone on the spectrum. Some people said they would have liked information aimed at siblings when they were growing up.
Amy would have liked to learn from others' experiences.
Amy would have liked to learn from others' experiences.
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.
Parents were often the main source of information, either directly through giving them relevant books to read, like My Brother is Different, or indirectly through hearing autism talked about at home. Some people said they tried to read books they found lying around at home when they were younger, but these were difficult to understand as they were aimed at adults. One person didn’t want to bother her parents with her queries because she didn't “want to get in the way”, so she read what she could find.
Jenni tried to read some of her parents' books when she was younger, but she couldn't understand a word of them.
Jenni tried to read some of her parents' books when she was younger, but she couldn't understand a word of them.
I tried reading a couple of my parents’ books that they’ve got, I mean they’ve got hundreds of things but I just thought I’d like… because obviously when he was around all that much I wasn’t much older than he was and although I like, at the time I liked to believe I was very, very mature for my age and I knew everything about everything, I didn’t understand a word of it. I understand a lot more of it now and I’m still quite interested in it, but it’s not so much, I must know everything. I know quite a lot I just sort of absorbed it from the environment because both of my parents have been very heavily involved in special education and stuff like that and the local special needs schools. So it’s things like that. So, I'm like a sponge [laughs].
Steph can remember 'forming an opinion about what autism was' when she was a child, but doesn't remember where that opinion came from.
Steph can remember 'forming an opinion about what autism was' when she was a child, but doesn't remember where that opinion came from.
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.
Other sources of information were school or college, the internet and talking to other siblings at support groups. One person found information on the internet was “quite biased” and she didn’t know how reliable it was. Several people had read 'The Curious Incident of the Dog in the Night Time'. One person read this with her class and was able to use the opportunity to tell her friends about her brother’s autism while another person questioned whether her brother was autistic after reading it.
Lucy read 'The Curious Incident of the Dog in the Night Time'.
Lucy read 'The Curious Incident of the Dog in the Night Time'.
One person, who worked as a health professional, kept up-to-date with current ASD research by reading journal articles. She said it was “nice to be able to read from a personal interest of my own, and to develop my work knowledge at the same time”. Another said that her brother made her read information he found on the internet. She felt that it both reassured and helped him, but again questioned the reliability of online information.
The type of information people wanted varied. Some wanted to hear other experiences of living with a brother or sister on the autism spectrum, while others wanted more factual information, such as books by Tony Attwood.
Several people said they would have liked more information during their childhood, or at least have it available if they wanted it. One person said she would have liked information about different periods in her brother’s life, such as puberty or becoming an adult. One person described the information available to her as “condescending and embarrassing” and another said that what she read was “too in-depth” for a child. The sibling section on the NAS website was more about autism than Asperger syndrome and so less relevant to one person.
Jenni thought that information should be age-appropriate.
Jenni thought that information should be age-appropriate.
Sophie felt that the information she received was insufficient.
Sophie felt that the information she received was insufficient.
The reasons for seeking information varied; some wanted to gain a better understanding of why their sibling did the things they did and wanted to try to work out which bits of their siblings’ behaviour could be characteristics of ASD. A few people wanted to gain knowledge about ASD because they felt responsible for educating others, such as teachers, relatives and friends, about the condition. One person read more about Asperger syndrome when he started his job as a Learning Support Worker, whilst another searched for information about autism when her daughter began to display what she thought were autistic behaviours. Others felt reassured hearing about other siblings’ experiences and realising that there were other siblings with similar experiences.
Steph had to educate a school friend about what autism was.
Steph had to educate a school friend about what autism was.
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.
The desire for information changed over time; some felt they had reached a point where they didn’t need to learn any more. This was particularly the case for people who no longer lived with their siblings.
Graham doesn't think about autism anymore, and doesn't need to know anything more about it because 'Richard is Richard now'.
Graham doesn't think about autism anymore, and doesn't need to know anything more about it because 'Richard is Richard now'.
Ellie found information reassuring but 'it didn't feel right' looking for information with her brother in the other room.
Ellie found information reassuring but 'it didn't feel right' looking for information with her brother in the other room.
Damian needed information for his job.
Damian needed information for his job.
“You have to live with it to understand it”
Some people had no interest in information about ASD. They felt that the autism spectrum contained such a range of different people that information would not be relevant or useful to them. As one person said, “information would miss out all the little bits... it can’t tell you what your brother or sister’s little rituals are”. Some also felt that knowing more about ASD could not change anything in their lives. It would not change the way in which they treated their brothers and it would not change the fact that they had autism.
Flick thought that knowing more about autism would not change how she felt.
Flick thought that knowing more about autism would not change how she felt.
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.
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.
Marti felt that that information could not teach her about her brother.
Marti felt that that information could not teach her about her brother.
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