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Parents of children on the Autism Spectrum

Communication; understandings

People on the autism spectrum usually have social and communication difficulties. Many find it hard to read other people’s body language and facial expressions and can have a very literal understanding of language which can make communication difficult in all sorts of social situations. Most parents we talked with discussed the difficulties their children had with communication. Many children had delayed speech when they were young (see 'Early signs; developmental milestones') and as they grew older other communication difficulties became apparent. A few of the children hadn't developed speech and communicated using British Sign Language or pictures.

 

Catherine's daughters understand spoken language better when it's combined with signs.

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Catherine's daughters understand spoken language better when it's combined with signs.

Age at interview: 54
Sex: Female
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I have two teenage daughters, and they both have severe autism, with IQ’s that were estimated to be less than 50. They are not yet able to learn language and related skills from their environment. Everything has to be taught in tiny steps with lots of repetition. Every word they know to say or sign or understand has been painstakingly taught in very labour intensive one to one teaching.
 
As they learn more, I hope that they can start to pick up some of their learning from the normal environment. My older daughter doesn’t talk at all, but is learning to use British Sign Language. She now has over 300 signs. She also learns to read the word card, and match it to a picture, for each new word. So she is able to make requests using a sign or word card or picture, though she strongly prefers signing. My younger daughter has some spoken language, and has learned a comparable number of words, but her pronunciation is sometimes poor. Both girls have a better understanding of spoken language when it is combined with signs or other visual information.

Interacting with people
"He’s not very good in a group of people” was a typical comment from the parents we interviewed. Many of the children didn't understand rules of polite behaviour such as saying “hello” to people without prompting, or knowing when to smile and make eye contact. Some of the children argued instead of talking about things and didn't know when to end a discussion which some parents said could be both trying and tiring. One family found it easier to communicate via online instant messenger within the home because it avoided misunderstandings about body and facial language.

 

Mary-Ann describes how Arthur is very verbal and will talk and talk.

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Mary-Ann describes how Arthur is very verbal and will talk and talk.

Age at interview: 32
Sex: Female
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And they are like… because Arthur… with the communication and that, Arthur is very verbal and he talks a lot and he talks at you and he will talk, and so people think, oh well he is very intelligent. Oh you know he is coming out with all these big words, oh you know, and he is very verbal and sometimes… well autism, severe autism, often the children have no speech or very limited speech. So you can find with Asperger's, when people meet them, they can think, well what is the problem? They can’t be autism because he can talk, you know, and it is like, it is more the pragmatic difficulties and that, and you know the knowing when to stop and when to let someone else talk and knowing how to say goodbye, you know how to end conversations and how to start them and it is that, and knowing how to take into account what the other people are thinking, because someone will be trying to go, they are in a rush, and Arthur will be talking and talking and talking. And it is that kind of thing that is more a communication difficulty rather than a speech difficulty.
 

Jane finds her son’s ability to argue so effectively challenging.

Jane finds her son’s ability to argue so effectively challenging.

Age at interview: 47
Sex: Female
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So the difficulties are also related to the fact that if he objects to somebody saying something, at school he has learned to wait his turn. He puts his hand up and he waits his turn. When he was about 4, or 5 and [sister] starting speaking when he was about, well [sister] is four years younger than him. I would say to Joseph, “When you want to speak Joseph,” because he would always talk on top of people, even now, “When you want to speak Joseph, put your hand up.” And I realised I had gone really far with this, because one day in the back of the car, [sister] sat with her hand up because she wants to speak [laughs]. And they sit there, and in the house sometimes, they put their hand up when they want to speak and it is so funny, the training that you do.
 
So the challenges are, if I say, “Shh, not now,” he has to finish his sentence for as long as it lasts. He can’t just stop. There is no point in me getting into an argument with him on a logical basis because he will win every time. His intelligence far exceeds mine. His knowledge base far exceeds mine. And it is sometimes I just say, “Oh just shut up, please, just shut up. I am tired, just shut up.” And I close my eyes and I close down and then of course I get the rational argument, “Well that is no way to finish an argument, mummy.” You know, because then he re-quotes me and he says, “You have to talk about it.” I say, “Oh Joseph, not now.” [laughs] And he doesn’t get the body language and then he has to re-explain himself and he has to re-assert himself and I… I just walk away and he follows me [laughs]. So I go in the room and I close the door and he know that when the door is closed he has to knock on it and he can’t come in the room until I open the door and let him in so he is very, very good with the rules but he will sit outside the door and carry on telling me. He just doesn’t stop.

One mother described how her son “will scrutinise his change in the shop with such dedication that it usurps the shopkeeper and they feel threatened.” She went on to say how people feel uncomfortable because they don’t know how to respond; she suspects that some see him as a “very rude young man”. Several parents talked about how their children didn't smile very often (see ‘Early signs; developmental milestones’) and other people such as family members or friends commented on that. It was clearly difficult for parents; one mother gave her son tokens for smiling as he did it so rarely and another mother described her son as “quiet in himself and sad”.

Being literal
Many parents talked about how their children were very literal in how they understood language and how this caused misunderstandings. As one parent commented, everything was “very black or white without any reading between the lines”.

 

Rachel’s son would not get in the swimming pool after the teacher said the water was ‘nice and hot’.

Rachel’s son would not get in the swimming pool after the teacher said the water was ‘nice and hot’.

Age at interview: 42
Sex: Female
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We were in the swimming pool last week and he wouldn’t get in the pool. Somebody had said, “Water is nice and hot,” and he wouldn’t go in. It took me quarter of an hour to get him close enough to the pool, because he is a big boy, so that his teacher could get him into the pool. But he just screamed, he thought… I said, “Do you really think I would throw you into a boiling hot pool, darling,” because it is full of other children who weren’t burning but of course he couldn’t make sense of that. When Tom was little we used to say, it's raining cats and dogs and he was so worried about our cat. He kept saying, “Where is Bluey?” and I didn’t get it. I didn’t understand, “Where is Bluey?” Now I say it is raining heavily. I never did that again. Oh he was so scared. “It is raining heavily Tom.” And he was terrified and it took me ages to work out, that he thought, he kept saying, “The roof, the roof.” And he just thought the rain was going to break the roof and break the house. He was really scared.
 
I took him, he was into Power Rangers, so I bought him a Power Ranges outfit, no it wasn’t, it was one of those super hero ones, ones with all the different flying machines. Thunderbirds. I bought him a Thunderbirds outfit and he got it and he cried all the way round the shop, and screamed and screamed and screamed. “I am ready to leave you mummy.” And I didn’t understand. “Baby, it is only costume.” But it is little things like that. And you don’t, when you have just bought them something and they are wandering round the shops and they are screaming and people are staring at you because you bought them what they want, and you think what have I done? It is obviously trying to understand about literalism, about what was going on in his little head. He was just terrified.
 
And he hated loud noises, and he hated dogs, because I know [laughs] not this dog. He hated dogs because they are unpredictable. It is something about their heads, the way they move, their teeth, he was just terrified, absolutely terrified of dogs and we used to take him to the woods, and he wouldn’t go into the woods. We have got a lovely big wood near us and he wouldn’t go there. He thought the bears were in there because he had seen some programme somewhere on Tellytubbies I think when there was a scary bear with rolling eyes and he wouldn’t go into the woods in case the bears got him. It was just little things all the time, you couldn’t really take him anywhere. If you took him to the beach he thought the undertow or the crabs would drag him into the water and eat him. Or everything. He was terrified of everything.
 

Diana’s daughter means very well but takes things very literally.

Diana’s daughter means very well but takes things very literally.

Age at interview: 66
Sex: Female
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But she gets very wound up about things, you know, and if we are going away, you know she gets so excited. You know she is sort of constantly saying, you know, “Come on, you have got to go, got to go.” You know and dashing around like a bull in a china shop. Everything goes flying everywhere and she winds everybody up and she takes everything very literally you know. If people say, you know, “Well I can’t stay long,” then she is constantly saying, “You said you couldn’t stay long, didn’t you ought to be going? You are not supposed to still be here.” You know, and she sort of gets you now, quite rude to people sometimes, you know.
 
And she is always – I mean she is very friendly and she is quite a sort of character in the village, but she is always sort of rushing to help people with things, like you know, if she sees somebody carrying their shopping, she will grab it from them, you know sort of snatch it from them, not say, “Can I help you?” nicely. She will sort of grab and then she will spill everything [laughs] and you know things go wrong for her really. But she is a nice girl who is well meaning, but it just doesn’t come out right. You know.
 

Jane’s son finds it hard if what people say is inconsistent with what they do.

Jane’s son finds it hard if what people say is inconsistent with what they do.

Age at interview: 47
Sex: Female
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So yesterday, he is fourteen now, he is taller than me, he is quite medium build. He is very, very intelligent. He has just got two A stars for his science GCSEs. He is still doing very well with his clarinet and piano. Yet the teacher asked him in the classroom something and he didn’t understand and he will have given what he thought was a witty reply and he said, “The teacher then said to me something about a basic level of politeness and I couldn’t understand what she said and I kept asking what she meant, but it didn’t make sense.” To him it wouldn’t have made logical sense and he remembers exactly what people say precisely. And if there is inconsistency between what they say and what they do, then he is confused. And he said, “I was so upset that I just burst into tears.” And when he cries it is a very physical thing for him. He can’t modulate his voice, neither does his crying get modulated and I said, “Well how did you calm down.” And he said, “Well the teacher said she would go and talk to the SENCO.” And that is probably what it is, the teacher probably stopped trying to explain and recognized that he had reached, that he had gone beyond his limit.
 
But one of the things you can never do with him is rationalise in an emotional way. It is very cut and dried and it is quite hard to have a conversation when you are trying to explain feelings and emotions and that can make people seem irrational because he just gets louder and louder with it, just doesn’t make sense. So apart from that he does surprising things. He is surprisingly considerate sometimes. He is surprisingly empathetic, which I am not quite sure whether it is learned or it is inherent. He is really, really kind to his sister and he can see if another person is involved, I would think it is a chain of behaviours and he will rush to help them.
 

Mary-Ann gives an example of Arthur interpreting things literally.

Mary-Ann gives an example of Arthur interpreting things literally.

Age at interview: 32
Sex: Female
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Well I can give you an example. At Christmas time we were over at my brother’s house and my brother, my brother has kids as well, two daughters. And they had all been in his house, and they had all been playing tag and running around and while I wasn’t there apparently they had decided that there was to be no more running in the house. Well Arthur as I said doesn’t sit down. He doesn’t keep still and he paces a lot. And my brother has got a big dining room and then a door and the lounge. So there is quite a long area to pace. And Arthur goes up and down. And anyway, Arthur, we were in the lounge and Arthur and it really bugs my brother actually because that constant movement it can get too much and for my brother it gets too much. Anyway Arthur was running up and down it, because there is a like a little steps and he would run and jump. Okay. So my brother turned round to him and said... What did he say? He said, “Stop running, Arthur.” So Arthur went into slow motion. So my brother turned round and said, “Are you taking the mickey out of me?”
 
And you know, he really made it as if, Arthur had deliberately, was deliberately being obtuse and was trying to show my brother up in some way, you know, which is just bizarre for me, knowing Arthur. Yes, may be, yes, he didn’t listen. Yes, you know, he went into slow motion. I said to him, I said, so I turned round to my brother, I said, “[brother] you need to be… “ I said, “He is not trying to show you up. He is not taking the mickey out of you. You have got to be specific. Tell him to walk. Don’t tell him stop running, because he has stopped running. That is not running.” You know. “You have got to tell him to walk.” And then my brother in law jumped down me, “Oh so you are saying that Arthur is right, and [brother] is wrong and …” and this and that. And you know and it blew out into total thing… and then they were like, “Oh you should have waited and told [brother] later that you have got to be more specific.” And I said to Arthur. I said, “Arthur what were you …” He said, “Well I slowed down. And you just don’t want me to run, because it is not safe going fast. Well I wasn’t going fast.” [laugh]

Another mother described how panicked she was when she lost her son in the Science Museum in London. When she asked him why he didn't ask for help from a member of staff - as she had taught him - he said he was not lost, his mother was. Some children didn’t know how to interpret jokes, sarcasm and everyday metaphors, and this had caused them some difficulties.

 

Ciaran describes how, for his son, everything is black or white.

Ciaran describes how, for his son, everything is black or white.

Age at interview: 53
Sex: Male
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That is the thing we don’t know at the moment, but it accounts for things like everything is taken literally. It is either black or it is white. They don’t understand things like sarcasm or reading between the lines, you know, the things that you develop, social skills or communication skills, without knowing you are developing them. Autistic children can’t do that. The brain doesn’t allow them to do that. So that is why they are always asking questions like, “Are you being serious?” You know, they don’t understand jokes or they pretend to, to be socially accepted, but don’t really understand. They read things, great reading skills, but don’t really understand what, no cognitive awareness of what they are actually reading and some of them have tremendous, highly developed skills in certain areas, like photographic memory, and they read, and like my son, anything he reads on football is locked in there for ever and he will recall it to minute detail. But if you send him upstairs to pick something up and he has forgotten by the time he gets upstairs what you sent him for. Short term memory is a big problem, but things of interest he has an enormous capacity for memory. But like I say basic living skills, he has very few.

Many of the children didn'tt engage in pretend play and this limited their games with other children. Often, problems would also arise when children interpreted the rules of games, such as football, very rigidly and became upset when other children varied the rules or decided to play something else altogether.

 

Nuala thinks games of ‘tag’ and ‘it’ are lethal if you have Asperger syndrome.

Nuala thinks games of ‘tag’ and ‘it’ are lethal if you have Asperger syndrome.

Age at interview: 43
Sex: Female
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He’s… very likely to… nowadays, typically because for example, he will be wound up by the children in the playground often not deliberately. It is sometimes because he doesn’t understand what they are doing. So perhaps they will be playing a game and then they change the rules. Games of ‘It’ and ’Tag’ are really lethal [laugh] if you have Asperger's; suddenly all the children will decide that they are going to play ‘Star Wars’ instead and he can’t understand what they are doing at all and he can’t understand why they don’t want to play the game they were playing before and he can get very upset. He is much better at handling that but if it is combined with children, perhaps teasing him, or perhaps sometimes, deliberately winding him up occasionally, he can’t handle that very well, and he will simply sit on it for half an hour and then explode. So it can be very destructive.
 
In the past he would blow up very, very quickly at quite small incidents. So he would misinterpret something that somebody said, or he disliked being teased when he was younger because he didn’t understand it. He thought they were deliberately getting at him and he would explode very quickly. He is much better now. A lot more has to happen.
 
The other thing that will typically bother him now, will be issues around fairness; feeling that he has missed out on something. There was an incident recently, where he, because he has a lot of difficulty planning and organising, he missed out on a gold sticker at school for behaviour because he failed to take his homework diary into school at the right time, and really that is because he can’t plan very well over a week, there is not a chance. He is only nine and he couldn’t do that. He took it in a day too early and then didn’t take it on the right day and so he didn’t get the sticker and he was absolutely bereft, really, really upset because he felt, I think, so excluded, it was just something that he could not possibly attain and he was so aware of the differences between himself and other children I think and it is that kind of where he feels it was an unfairness he will get very, very upset and if he is a bit tired and maybe a bit, you know, he has had a lot of homework or something, sometimes that kind of thing will really touch off a tantrum very quickly.

Some parents described how their children had a strong sense of injustice and would sometimes feel that they were victimised. Being told off was a problem for some children and a few parents described how their children were convinced that they were always right or, as one parent said, “He is convinced that everyone else in the world is stupid and he is fine.”

 

Christine's daughter worried when her teacher said she'd 'have their guts for garters' if they...

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Christine's daughter worried when her teacher said she'd 'have their guts for garters' if they...

Age at interview: 50
Sex: Female
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Well because we were left in limbo again when she was out of school again and this had been going on for months and second school. And what had happened at the end of the crunch with that was when she had gone on like a taster class before the school holidays. The teacher said, “Well I am a stickler for homework.” She said, “If anybody doesn’t have her homework on time I will have their guts for garters.” Well I had been teaching our Elisabeth metaphors and she come home and she said, “Do you realise you are going to put me in someone’s class if I don’t have my homework in they are going to kill me.” But she took it literally. And I said, “But she can’t kill you. I wouldn’t let her kill you.” Well she thought I couldn’t protect her. She really took it seriously. She went running off in school dress, running round the estate in a panic. But even though we tried to reassure her, it was always in the back of her mind.

Some of the children had very good memories and would remember events that upset them for a long time, sometimes several years. One mother described how “if something bad has happened on one week, that is the one thing that he remembers. Of all the good stuff that has happened, it is the one bad thing that plays on his mind”.

 

Daryll describes how Tiffany will over-react to events with friends.

Daryll describes how Tiffany will over-react to events with friends.

Age at interview: 60
Sex: Female
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And so she gets it any way fundamentally [laughs] because certain things she really ought to know; the fact that she has got to engage in eye contact and relationships with peers. Just go gently with them. Don’t sort of think that the first… you see there was only one girl about her same age as her on this course in [name of college]. And she came in one night and she was absolutely silent and she didn’t go upstairs. She didn’t do any work and I said, “Come on. What’s happening?” She said, “How do you know anything has happened?” So I said, “Well I have been your mother for 19 years,” I said, “I think I could sort of pick it out.” She said it is, “Nothing, it will go.” And she should know that I don’t give in.
 
So after 20 minutes she said, “Well.” I said, “It is [name of girl] or [name of girl], [name of girl] isn’t it?” So she said, “Yes,” she said, “How do you know?” I said… “Well,” she said, “Something and nothing.” I said, “It probably is something and nothing, Tiffany. It’s something that has upset you which she didn’t mean. And if she knew that you were upset, you know, she wouldn’t have done it.” So I said, then I get very defensive and sort of say, “How was she today?” She said, “Well…” It took about five days for it to get over but since they only see one another three times a week, it is not surprising. But she could have been having an off day and she’d have said something like you know, I mean if you listen to Tiffany, I am the most horrible mother, I am always shouting, I never have a laugh, I never… So I know how she reacts to other people.

In addition to a very literal understanding, some parents described how blunt and honest their children could be. This caused their parents some embarrassment or, at times, amusement.

 

Bobbi finds her son’s bluntness refreshing and thinks he can get away with it while he is young.

Bobbi finds her son’s bluntness refreshing and thinks he can get away with it while he is young.

Age at interview: 38
Sex: Female
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He is very much into music. But he is a very critical person, an unbelievable critic. If you are not singing well he will tell you. He is very blunt in company, he will, and once again that is probably the Asperger's, but he doesn’t say it in any way in malice. It is just sort of a fact. You know, you are in a crowded train on the tube and he is “mum it smells”. You know. But then I like that. Part of me likes that, you know. And part of me worries because he is six years old and he looks like a little cherub. He has got blonde hair, blue eyes, and he can get away with it right now. And I am wondering for how much longer he is going to get away with this and we probably let him get away with, in company, all of us, because we take it, we don’t take it as it is embarrassing us. Do you know what I am saying? You can be in mixed company and somebody could be acting like a complete idiot whether they have a problem or not. And because we all take things very lightly in our family, you know if he is acting up we laugh, you know, and it seems to diffuse it and it also seems to sort of calm him down and we get on with our business. And if anybody is staring at us, we are just so what, you know who cares. And I would like to think that both my boys will grow up feeling that. You know to be themselves as the ultimate at the end of the day you know, and no worry about what other people think about you, you know, that is all we can ask of. But he is a fun boy. He is really fun.
 

Barbara describes how Howard had no worries about talking about the details of his operation.

Barbara describes how Howard had no worries about talking about the details of his operation.

Age at interview: 80
Sex: Male
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It is like the time he had he had un-descended testicles, didn’t you? And he was going to school then and he had to have an operation after, worrying doctors to death, because of course in those days it was, oh because he has learning difficulties it is not worth, you know they wouldn’t consider them for operations or treatment or anything. So in the end they took him into hospital and I said, “Well…” I thought he would be embarrassed at school with all the boys in the class. What on earth would he tell them? So I said, “Howard, what did you tell them?” “Oh I told them I was going into the hospital and have an operation for un-descended testicle.” So it was me that was at fault, not Howard. Howard was OK, weren’t you lovely?

 

Last reviewed July 2017.

Last updated November 2010.

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