Having a sibling on the autism spectrum
Organising family life
The organisation of family life can be complicated when a family member is on the autism spectrum. Different aspects of family life, including routines at home, going out, mealtimes, family holidays and the organisation of the family home, were discussed, with the overriding emphasis placed on need to try to maintain routine and reduce anxiety for their siblings.
“Some of the time we were treading on egg shells”
The greatest constraint on family life, for many people, was the importance of sticking to the siblings’ routines. People with autistic spectrum disorders (ASD) may depend on routines and rituals to minimise their anxiety. A break in routine can cause great distress, which, in turn, can complicate family life. Several people said that, as a family, they tried to accommodate their sibling’s routine. As one person said, “It was just the way everyone has to think of him and put him first, before anyone else, because he needed it”. This could cause tensions and pressure within some families leading to arguments. Some people reflected on how they learnt to put their brother first, after some initial resistance when they were younger.
Trying not to upset their brother triggered a lot of rows between other family members in Alison...
But of course, our family was much larger, than most other families that I knew, so it might have been down to that. Yes, we were a bit, some of the time we were a bit treading on eggshells to sort of make sure that nothing happened to cause any upset for my brother which would then, often then, you know, triggered a lot of rows between the rest of the family if, you know, so there was quite a lot of back treading on eggshells and things to try and indulge his routines and other requirements. But every now and then it would get too much for somebody and they would get upset and start, shouting and so on. And that could have been any of us. Might have been my parents. My Mum sometimes got quite upset. Might have been me. I sometimes got upset. My other brother sometimes got upset. I don’t remember my younger sisters getting that upset. But yeah, so it did make the sort of emotional relationships, I think, more fragile than they might have been anyway.
Sophie says you pretty much go out your way to make him comfortable with home life, it makes it...
It’s quite tough and very emotional. You know, your emotions, you don’t know. One day is never the same. You know, every day’s different and you’ve just got to take that day, each day as it comes, because you know, every day [brother’s name]’s got a new routine that he has to do before he goes to bed, and you’re constantly adapting yourself. Like I can’t wear nail polish because [brother’s name] doesn’t like it. That’s something he can’t cope with. So, you know, you’ve got to go round his needs rather than your needs. You know, you’re just shaped round him, and I think, you know, that in itself is quite tough because some people just turn round and go, “Well I’m not doing that. I want to do what I want”. You know, I learnt the hard way by doing that. I was initially like that. But you learn, you quickly learn that that’s not the way forward. So you pretty much go out of your way to make him feel comfortable with life and the home life, it makes it easier.
Steph says that she and her family work round her brothers need for routine.
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.
Jenni had to go to bed before her younger brother because he would get cranky if she was still up.
Sophie talks about how it would be amazing if her brother did not feel anxious.
Yeah, because, you know, just for him to get out of bed, and say, “Oh I feel happy today. I don’t feel anxious or anything”. You know, that would be amazing for me and my Mum. That’s the least we’d expect from it. Do you know what I mean? Just trying, just to get him out of bed, and happy, I think is our ultimate goal any way, but, you know, if he could find employment, or friends or anything like that. That’s just bonuses really. As long as he’s happy and he gets out of bed and he’s doing something, whether, you know, it doesn’t necessarily have to be college or employment, but you know, if it’s walking next door’s dog and he’s happy, that’s all we can ask for really. But I think he wants more, we’ll have to do it gradually.
Katherines brother can create a barrier in their family as its all on his terms.
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.
“My parents didn’t want to take him out”
Several people talked about the difficulties they had going out to different places with their siblings. Leaving the house to go to the shops or on family outings could be difficult. Again this was often related to their sibling’s strong need for routine and dislike of unfamiliar places. Their siblings often had rituals and obsessions that could be very constraining for other family members. As a result, outings were often focused on the siblings’ interests or were age appropriate to their sibling, which could be difficult for them.
Others explained that going out wasn't easy because they worried about how their sibling would behave and how other people present would react towards him or her. Some people stopped going out as much because of their siblings’ ‘meltdowns’, but this suited some siblings who were very happy to stay at home.
Marti explains that changing the route they take in the car can result in upsetting her brother.
Ellie did not enjoy going out with her brother when she was younger because she didnt want to...
“We would need a holiday after the holiday”
Going on holiday was another aspect of family life that could be less than straightforward. The disruption to routine could be difficult for their siblings to cope with and holidays took a lot of planning. The destination was sometimes related to the siblings’ interests, again to minimise tensions, and a few people said they were unable to travel abroad. One person said that her family could “never take [her brother] on holiday” while another said that her brother insisted that they do the activities he likes because his benefits had contributed to the cost of the holiday. Going on holiday with extended family members who do not understand ASD was also difficult.
Graham recalls how a family holiday was disrupted by his brothers behaviour.
No a good example is when we went to the Norfolk Broads when we were about…I must have been about 15, 16 I think and we’d got there and Richard had forgotten one of his consoles. And he screamed and shouted and wouldn’t get on the boat. And then my parents eventually managed to, because my dad was saying, well I’m going to have to drive home like three hours, four hours and go and get it. And my mum was like, no, no, no. We managed to reason with him, that they went and bought him something at a shop to kind of calm him down. And I remember that, and that was like a perfect example in my recent memory of like when things have been difficult and then you have to just kind of reason with him, which is normally quite difficult to reason with him. But yes... but something like that I wouldn’t go home and like talk to my mates in depth about it or anything at all.
Lucy discusses how family holidays always involved visiting train stations at her brothers...
Amy explains that a family holiday with relatives was complicated by their attitudes to her brother.
Damian explains how family holidays have to be carefully thought out.
A couple of the people said that they no longer wanted to go on family holidays. For one, this was because she was bored of doing the activities her brother wanted to do. Another who described herself as a 'control freak', found it difficult to deal with her parents being so disorganised.
“Meal times will probably cause an argument”
Some people said that mealtimes could be difficult. One said this was because the range of foods her brother ate was limited due to his sensory sensitivities and she would feel “kind of rejected” if he didn't eat the meals she prepared. Another felt that dinner time should be a social time for the family but her brother didn’t want be part of after-dinner family chats. She said that “everyone misses out because we’re not spending time with each other”. Mealtimes could also be difficult because of the need for routine.
Eloise says that most of her familys arguments happened at mealtimes.
Yes, meal times are quite difficult, he has a very, similar to the, the sensory kind of, doesn’t like loud noises, his range of foods that he’ll eat is very small that can be quite frustrating for whoever’s cooked. Because even though if my mum’s cooked or dad’s cooked and he doesn’t eat it, I can kind of see why. I can be like oh he doesn’t like that, that’s why…. But if I’ve cooked and then he doesn’t eat it, I feel just as kind of rejected as they do. That can cause quite a lot of, it probably does cause the most arguments, because then they’ll, we try and then consult him about what’s going to be had for dinner so that he will actually eat because he doesn’t eat enough. So and then he won’t know and then it all gets quite fraught [laughs]. But, so that’s quite, yes, meal times are probably the most, we don’t really argue as a family, but mealtimes will probably cause an argument. But he does like cooking and he makes very good bread. So maybe he’ll start cooking and experimenting with food and thus eat more things.
Jennis brother becomes cranky if she does not attend family meals when she is in the house.
Yes, if I’m in the house I’m supposed to have dinner, otherwise he’ll get cranky because like he knows everyone’s around, but not everyone’s around. Over Christmas it’s like he’s, it’s really odd like, like autistic kids aren’t really supposed to have imagination, so he shouldn’t really be able to like believe in Santa. But he seems to. Because a couple of years ago I was babysitting next door over Christmas on Christmas, well it wasn’t Christmas Eve, but it was his Christmas Eve and he would not settle. Like he goes to bed at about 9 o’clock when he’s here and I was out until about midnight and for those three hours he was just really, really where is she? She’s not in the house? I’m not going to settle. I’m just going to cause as much problems as possible, because obviously he seemed to think that Santa wouldn’t come if I wasn’t, if everyone wasn’t in the house. It was really strange. So I’m now just not allowed out over that time.
“You couldn’t leave any lotions in the bathroom”
The organisation of home space and belongings was something a few people talked about. Some of the siblings were territorial and would dominate a particular room in the house, such as the living room. Katherine’s brother would retreat to his room for long periods of time and only speak to her mother. This could create an atmosphere throughout the house. One person recalled feeling stressed when she was growing up because of the number of support workers coming into her home for her brother who needed a lot of care. She found this disruptive and intrusive.
Other people had to hide things like CDs, DVDs, liquid soap and toothpaste because their siblings would destroy them or make a mess. While some people were used to how things were, a couple said they would like to separate themselves more from their families. One said that she “can’t wait to move out” and get away from her brother “because he distresses the family”. However, others felt very strong ties and responsibilities towards their family (see ‘Thinking about the future’).
Ellie found home life very difficult when a lot of carers came to the house and it was just...
Marti had to move to a new area and attend a new school in order to accommodate her brothers...
Martis brother smashed their television and they cant leave any bottles of liquid in the bathroom.
Well we’ve had to put a screen on the television because he has smashed television, the plasma inside and we think, he didn’t tell us this, but what we gather is he smashed the remote on the screen and broke the telly, so now we have film cover plastic over the telly to try and stop that happening again. We have, we can’t have bottles or stuff with liquid in like toothpaste or the hand gel in the bathroom because he will tip it away. He sees something so he will tip it or spill it. He does put water down the sink now, but he it used to be just spill it. If there’s a glass of water, just knock it over, spill it, get a reaction. He gets a thrill out of that; hiding things that we don’t want broken. I’ve lived all my live hiding like my games consuls, my gameboy. He had his own Gameboy. We had to take it away, because he would get angry with it and throw it down the stairs and that’s led to a few near misses. If you don’t know he’s about to throw it down the stairs and you’re walking past the stairs, you had a risk of being hit by a flying Gameboy. So we’ve had to hide a lot of things that we don’t want broken.
Last reviewed August 2018.