Parents talked about their children enjoying a range of activities that included watching television and DVDs, playing computer games, reading or looking at books and playing outside. As one parent said “just normal, everyday stuff”. The children’s enjoyment of the activities was different in some ways to non-disabled or neurotypical children because they had very focused interests and could do the same activity, like watching a particular episode of a comedy, repeatedly.
Jane and Dan, both students, have two children aged 4 and 3. Ethnic background/nationality: White British and Black Carribean.
Jane' He likes going swimming. He absolutely loves going swimming. He likes taking the dog for a walk in the park. He likes holding the lead and he likes to try and command the dog [laughs]. He loves the swings. Loves the play park. So just being outside and being normal, having his wellies on, running in the mud.
Jane' He absolutely loves to be outside. He likes running up and down a big hill with his little toy truck constantly for like three or four hours at a time wearing himself out [laughs]. It is very funny to watch. …I think that is what he likes.
Dan' Yes just being outdoors and I would say going places, because even when you are driving to where ever it is and what have you, he is just enjoying and looking out the window and just seeing everything passing by and when we are getting to the zoo, because he just loves seeing the animals because when we went to the safari, we went to the safari…
Jane' Yes. He loves animals. He is like amazed by them. When we took him to Knowlsley Safari Park and we had a monkey on the car and he thought it was the most funniest thing ever [laughs]. He likes playing with his sister. He has got a very, very close and loving relationship with his sister. He really loves her and like gives her hugs. And he loves Dora the Explorer. Barney. Pepper Pig. Can’t understand why everything in Dora is pink and he can’t have anything. He loves dressing up in [name]s clothes. He has no concept of girl and boy so he loves being a pretty princess or a builder. He is just your average three year old I think.
Most of the children liked watching the television or DVDs. Often they had favourite DVDs that they watched over and over again. Some of the children enjoyed documentaries about animals or the weather while other enjoyed repeats of old TV sitcoms like Only Fools and Horses, Open all Hours and Norman Wisdom films. Some of the children enjoyed jokes and puns although they didn't always understand the punchline because they took things very literally (see‘Communication; understandings’).
One boy really liked Doctor Who and insisted on being called ‘The Doctor’ by everyone. Some parents talked about their children’s encyclopaedic knowledge about dinosaurs, animals, maps or films and many of the children enjoyed reading or looking at books, particularly factual books such as encyclopaedias.
Joy, a library assistant, and her husband have one son, aged 13. Ethnic background/nationality: White British
And what would he do, like on a typical day at the weekend if he was here?
At the weekend… That’s he wouldn’t be like a normal teenager in that he would be hanging out with his mates, but he would probably read a lot, he would, if he can, get on the computer not to play games, but to look at different websites and stuff about trains and other things that he is obsessed with. He loves, he is very fond of comedy programmes, old fashioned comedy programmes, BBC Seven, is his idea of heaven. He loves comic songs, he loves monologues. At the moment he is trying to learn Noel Cowards ‘I have been to a marvellous party’ [laughs]. Stanley Holloway monologues, Albert and the Lion, he loves anything like that.
He loves jokes. He loves puns. And so he may well do that. He likes to have all comedy programmes videoed. He is very interested in a lot of things. Sometimes he will help his dad in the garden. Sometimes [um] if the weather is nice, he likes to go to the river which is just along our road and he gets in the water and he makes damns and things like that and gets very wet and very muddy. But no, he is not very socially confident and I would like, if I would like anything for him in the next year or two, it is to see him be more independent socially outside himself, i.e. sort of say I am going to go with so and so to the cinema or I am going to go, you know to the shops.
I think he is always bothered he might meet some not nice people from school. He never says that to me, but I sort of think that that’s, he probably has anxieties about that, that he wouldn’t know what to do and how to get out of a situation and it is all right at school because there are adults about. But no, that is what he would probably be doing.
The computer or games console was very important to some of the children. Playing games like Runescape - a fantasy themed game which involves various quests and challenges - was a popular activity while some children enjoyed surfing the internet. A few parents thought that their children liked the order, control and predictability of computer and games console.
Liz, 45, lives with her husband, a chicken farmer, and two of her three sons. Ethnic background/nationality: White British.
So at the moment it is computers and trampoline is the only things that he has kept for quite a while, going. Computers specifically you know if he couldn’t use his computer, I think, it is like depriving him of oxygen, it is his life which again, makes it difficult on the epileptic side of things.
What does he do on the computer?
Actually at school he can use the computer very well. They said he has got a very analytical sort of brain and he does know how to use the programmes properly and it is not just playing games, but when he is at home the one game he has played for two years now, which again, before if you bought him a CD of a game he would crack the game and then that’s it, he would never touch it again. But the one thing he is doing now is Runescape because again Runescape is feeding his imagination which he hasn’t got. He cannot sit down and play a game and imagine things, imagine a story and you know imagine that this car is doing this. He never did that, even as a child he never did any of that sort of play. It was all puzzles and maths and those sort of things. So Runescape has opened doors in the sense that he has to chop wood and make flint stones and armours and you know, he has to actually produce things and then obviously they have a battle, but he is talking on the internet with his friends who are all doing the same thing and every day is different, which again feeds the ADHD where you know they are bored of doing whatever they do. They can’t do one thing every day and stick to it, because it is just boring.
So it’s helped and it has helped also a little bit at school because not long ago he was made to sort of write a story and of course if you sit there and say, “Oh can you please write a story about this”, he has no imagination so he finds it very difficult to sit down and write a story. And what he did was he enacted one of his battles from Runescape so which in turn he wrote a very, very nice sort of page. So of course then because he actually sat down and did that work so nicely, they gave him you know points and he then got to read it to the head mistress. So it kind of boosted his esteem. So I am very torn because as a parent I don’t want him to be on Runescape and computers all day long, but equally it is his world and if he is not on it, his behaviour is then, you know, bad because he will be hitting his brother all the time and poking him and annoying him. So it has kind of worked for everybody really, but I do feel a bit guilty as a parent of letting him be on the computer so long [laughs]. So guilt is a lot of it.
Age at interview:
Karen, a full time carer, lives with her two daughters aged 14 and 12. Ethnic background/nationality: White British
She plays on virtual horse games. There is various Equiverse, White Oak Stables, Equicarna, Horseland and basically what you do, is you buy and sell horses, you train them, you breed them, you feed them, look after them and you get virtual sort of player points, virtual money for like winning an event or something like that, so you can buy more horses or something like that and they usually have like a chat room or something like that. But she’s, in some ways, she is very, very mature. She doesn’t like people swearing in the chat rooms. She gets quite cross about that. She won’t put up with people coming in the chat rooms and trying to talk about sex or anything like that. Nicole doesn’t like sex. Its it is all very yucky.
Some children enjoyed the cinema while others didn’t. Some found darkness and the noise scary (see ‘Fears, anxieties, sensory issues and meltdowns’). A few parents talked about going to special screenings for children arranged by the local support groups, which worked because the children could wander around during the film or be noisy.
Rosie, a retired nurse and artist, lives with her partner and youngest son Sam. She has four children aged 29,27,26 and 14. Ethnic background/nationality: White British.
He loves, what Sam loves is he loves books and maps and animals. But he really loves going to see films. Absolutely loves going to the cinema. That is his most favourite thing. He would go every week if there was a film on and he loves watching DVDs and he is really knowledgeable about the actors and the directors and who did the music. If you were to say - oh, he loves James Bond at the moment. He is really into James Bond - “Who did the filming in James Bond for that particular film?” he would be able to tell you. Or where it was filmed and … it is amazing really. But he can’t remember how to spell ‘the’. That’s the... it is quite funny you know.
He loved all of the Lord of the Ring films and he loves the Harry Potter series and he can tell you about all the actors and what other films they have been in and Bill Nighy and all that, but some of the things he can’t.. . He has got no idea, he has got no idea about money. He has got no idea of the difference between a pound and a thousand pounds and a penny. Even though you try to get him to understand and sometimes you think ‘oh I think we have cracked it’, you know and the next day he has forgotten and it is back to the same thing.
Age at interview:
Nuala, a software engineer, and her husband have a daughter aged 11 and a son aged 9. Ethnic background/nationality: White British
What sort of things doesn’t he like doing?
Oh all things sporty [laughs]. Well actually he quite likes things like football, but I think he wishes, I think that he could play football on his own with nobody else [laughs]. Football is great fun, but why do there have to be other people kicking the ball too? It is not fair [laughs]. And they never give him long enough with the ball so a normal eleven a side match he just hates [laughs]. So he does do football and other team sports but he doesn’t really like them at all. He strongly dislikes things like circuses and theatres, and things where things go dark. Not a big fan. It is not worth it. We don’t get enough enjoyment out of it for that. He really dislikes that kind of experience and will get out of the auditorium, given half a chance. An absolute hate.
What about the cinema?
The cinema is okay, because I think it is worth it and as long as you go in after the... as long you make sure you are there, and sat down, before the lights go down or after the picture has started, he will enjoy it, because he is enjoying the picture. I mean it is worth it for the film as far as he is concerned but it has got to be something that really engages his attention, but he will put up with the darkness for that.
Several parents described how much their children enjoyed being outside; walking in the woods, gardening, playing football, running around and riding their bikes. Some of the children enjoyed the seaside, playing with sand and going swimming. One boy loved cycling to the allotment with his dad on a Saturday morning. He enjoyed stopping off at the sweet shop on the way and watching the trains go past during the morning.
Helen, a full time carer, and Jason, a garage mechanic, have two sons aged 6 and 2. Ethnic background/nationality: White British.
Helen' He likes gardening. We had an allotment before we moved here but he has become more uncontrollable almost I suppose, more of a challenge. I wouldn’t say he is asserting himself, but he is more of a challenge.
In what ways?
Helen' I don’t think it is the right word but trying to get him to conform to family life whereas he wants to be on his own but he doesn’t. He wants to bring all his cars down here on the mat and play in front of you because he doesn’t want to be on his own, but he wants to do his own thing, but with you within striking distance. So that is a difficult one now isn’t it? We don’t have time for things like that but we try, we planted hundreds of bulbs in the garden in November and he had them all lined up in rows. In daylight you would see, they are all coming out and they are all in nice little neat rows. Not what I wanted because I kind of went sprinkle, sprinkle, sprinkle and it is like no.
Jason' They have got to be straight.
Helen' [Laughs] So they are all in straight rows all down the flower beds, which I hate, but… [laughs]. So he likes gardening. He likes anything outdoor. We go down we have got a nature reserve at the bottom here. A lot of wild birds and stuff and the RSPB were down there the other day with their cameras and telescopes and binoculars and the spent ages showing him different birds because they had a hide set up and he was in there for ages wasn’t he just looking through….?
Jason' Yes, looking through binoculars.
Helen' Yes. That all fascinates him. It is, I don’t know. That is Josh isn’t it really and it is just nature as a whole. God knows what he is going to be when he grows up. Something rich we hope [laughs].
A few of the children enjoyed pretend play and games with imaginary friends. One boy enjoyed pretending to be a doctor while another enjoyed re-living films he had seen.
Nick, a design engineer, and Vikki, a teacher, have two sons aged 10 and 8. Ethnic background/nationality: White British.
Vikki' Yes, re-living films so he will create this beautiful scenario. He has got about four kingdoms in his mind so he has got these, I am not quite sure what they are called and he knows exactly where they are on the map. He can point to them. They are all completely imaginary. He has got his own military force that patrols each country. Colonel Benson regularly comes to stay with his wife and family and we have to lay extra places at the table.
Vikki' And again he is all very eloquent. And it is all very deliberate and you can specify the aircraft that he uses and the military weapons but they don’t really exist, so the weaponry is incorrectly specified or the infantry. It is all wrong but it said with such conviction that it is right. So to the untrained ear he sounds a very knowledgeable, intelligent child but when you scrape beneath the surface and you can actually say that he is a combination of films that he has watched with books that have been read to him with his own imagination twisted together to make his own little world. And it is so much so that he can recite Horrid Henry down to distortion on the soundtrack.
Nick' On the tape yes.
How would he spend a typical day like Saturday?
Nick' He might get up at 6 in the morning and come in and jump on the bed and expect us to get up or alternatively we might have to go and get him up at half nine. It depends. He will come down. He will have breakfast and he will go upstairs and get himself ready and then he will either play in the bedroom or he will want to play on the computer. Occasionally he will play with Tom and sometimes sort of two times in ten they will play quite happily for two or three hours, but other times you will start hearing things being thrown around and shouting and screaming going on up there because something has not gone right. So we will separate them. I don’t know.
Some of the children’s interests could be called ‘special interests' as their interest and focus on these particular topics was more intense than usual. These interests included animals, zoos, museums, football, cars, buses and trains, nature, Super Mario, music and telling jokes. Several children loved animals and one mother thought this was because animals were easier to understand than humans.
One boy spent hours lining up his cars on the windowsill by size and colour order, others enjoyed shredding paper, stacking things or drawing ‘reams’ of pictures. One boy loved posting things and would post the letters back out through the post box while another “loved Pokemon and wanted to marry a rich Chinese woman who loved Pokemon too”.
Ciaran, a development manager, and his wife have a son aged 21 and daughter aged 18. Ethnic background/nationality: White Irish.
What does your son like, what sort of things does he like?
Well like a lot of autistic children especially Asperger's he has his rituals he has to go through and he has his obsessions and his big obsession is football. Luckily it is an acceptable one. Some children they have very odd obsessions which are not socially acceptable at all. It isolates themselves and their families even further. As I say luckily his is football. He just eats, drinks, sleeps football, nothing, no other interest in his life. He doesn’t read anything other football, he doesn’t watch anything on telly other than football, he doesn’t go anywhere other than football related. He doesn’t talk about anything other than football. It can become a bit a bit taxing sometimes but at least he does speak and converse but it is always on that subject.
So that is his main interest really, his only interest in life really. And when he is not doing that he is on his Play station and again it is football games on the Play station.
What things doesn’t he like?
He doesn’t like being put in a position where he has to make a decision or where he is being challenged or he has been asked to do something he is not may be totally happy with. That is when you get the anxiety and the frustration which can lead to the behavioural problems. He is happy in his own company. He has his own room which he retreats to on a regular basis and asks you to leave it if he doesn’t want you to be there. He is generally very happy as an individual, but he doesn’t really do anything and this is the problem how do we stretch him? How do we give him other interests in life that he can actually cope and manage with?
Carolann, a teacher, lives with her husband and daughter, Nita, who is 19 years old. Ethnic background/nationality: White British.
How does she spend a typical day?
Right you have seen some of it here. Because she is not actually in a job, although she would like to be, she spends most of her time on the net. Studying. She is now studying Russian, Japanese, Spanish and Chinese all on her own, as well as writing her second book and she is also training... she would like to do something creative and she has taken a great interest in nails lately, so she is going to train to be a nail technician, sorry I have kind of got a bit weepy from the last one, sorry. She wants to train to be a nail technician which would give her an outlet for her creativity. She is a very good artist and musician. She plays music, she writes songs, she has made a record. She used to be a DJ when she was younger doing the decks and the mixing. So she has got lots and lots of creative ideas.
She is always busy with her ideas and when she is not doing that, she is watching alternative films, made hopefully in Japanese. She likes to watch Japanese films in the original language to try and get to learn more. She buys Russian films. Spanish. She has an enormous collection of DVDs, and things. She listens to music, she loves alternative music. She is just getting into, probably sort of romantic music, like Debussy and Ravel and that stuff. And she quite likes that kind of music. A lot of ethnic music. She also exercises a lot. She is very concerned about her weight and her health, so she spends at least an hour or two a day exercising. Talking to me. Speaking to people on, I don’t know what they do on the net. I haven’t got a clue. Message board is it? Or whatever I don’t know, those things, chat boards. And that is what she does and she goes out for a lesson in Japanese to London once a week and she is starting Open University in November to do Spanish. She would love to do Russian and Czech but they don’t exist, so she is doing Spanish and then we will just see where it goes. That is her life. Sleeping, eating, internet, walking, exercising. Yes.
Many of the children were happy to play on their own or with their brothers or sisters while a few children enjoyed group activities like Beavers or the Scouts, although they had difficulties if the location of the group changed (see‘Fears, anxieties, sensory issues and meltdowns’).
Mike, an insurance broker, and his wife have four children aged 28, 27, 18 and 14. Ethnic background/nationality: White British
He just plays actually in his own company. He has got things like he stacks things. We bought him a load of poker chips, you know the poker chip, and they are different colours, poker chips, well he would stack them in a different. He doesn’t just stack them, he would stack all the black ones and all the red ones and all the blue ones. So he understands the difference in colours and he does that with anything. He separates the colours and he just plays with them. And he is very tactile, he likes things like play dough. And paint, he likes paint. He likes putting his hand in the paint, but sand, he loves sand, and he loves water.
Most autistic kids love water but he amuses himself. He doesn’t actually want you to play with him – ever, you know, so even, you can play with him a bit with a ball but he just gets bored, he throws it to you once or twice and then he walks away and just does his own thing. So where you are trying to play with him, we realise now, if he does want to, he will come to you which is very rare. So he plays on his own. He plays just… but he is happy and he just does that. And he eats a lot till we hide the food [laughs] but he does eat a lot. He can eat an adult portion of a meal, no problem.
Age at interview:
Rachel, a former social worker, is now a full time carer and lives with her husband and two sons aged 9 and 6.
Okay. They get out of bed really early, come down in their pyjamas and put the computer on and Tom wants to be a zoo keeper so he has got this game called Zoo Tycoon which is making your own zoos up. So the pair of them will sit there and play that or watch Star Wars, because we get to lie in now. My husband would go off and buy their breakfast which is usually chocolate doughnuts and croissants and things. And then the rest of the Saturday they will just play in their pyjamas and heaven forbid I should ask them to get changed. Sometimes if they are relaxed enough by the afternoon, friends will say, “Do you want meet over at the park”. Or we will take Bindie for a walk, and sometimes I will come out for a couple of hours or an hour or so and do that and then come back and just do what … and then sometimes by then they want to play a game with me. So occasionally we will play a simple game.
More Tom than Matthew. Matthew will just play his play station all day and not talk to any one if you gave him half a chance on a Saturday. We are mostly in our pyjamas eating and doing what you want. They play together a lot, so they are together a lot. They really don’t need us to play with them. They just want to be on their own or be together doing whatever they want to do. That is what they do.
And are they good at bedtimes?
They are, they are. I have got CD talking books for them in their rooms and so Matthew goes up and listens to Mr Wren and Tom will go up and listen to his or read his book in bed for a bit and then go to sleep. Neither of them go to sleep particularly early, but as long as Matthew has got something to listen to and Tom they will sit up there quite happily, unless they are very tense, unless… if there is a lot going on at school or they are very anxious they need us up there more often cuddling them, and helping them get off to sleep. Because often you find they are just in such a state and they don’t know why and they just need us to lie there and talk to them and cuddle them until they feel more relaxed and that can take quite a long time. But if they are relaxed they just go up and listen to their stories and go to sleep.
Some of the children’s activities were difficult for parents to deal with on a daily basis because the children did not understand issues around personal space or they chose to play in a particular place that obstructed other family members. One parent talked about how one of her children’s favourite activities was to walk around the house talking to her very slowly, which was wearing.
Christine has two adopted children, the oldest, Brian, is 30 years old. She lives with Brian and Alice, her daughter's child. Ethnic background/nationality: White British.
He does like [laugh] he does like unscrewing things especially taps. He used to be very good with taps. He is better since I got the new, it is like a shower tap even in the kitchen, it is a small one; that doesn’t seem to fascinate him but he likes the ones, the old fashioned ones that he can undo the screw. But he will stand by the sink all day, making drinks and that is why he goes to a day centre five days a week. That was the main reason why they funded all that because of him living in the kitchen and that is when you talk about life that is, it doesn’t sound much, but it is extremely difficult because let’s face it, there is about twelve tiles in the kitchen. It is extremely small and a large person… Brian is six foot five and if you get the two dogs in as well, you can’t get past him. When you want to make something you have literally got to say to him, “You have got to go out of here Brian, out of this kitchen.” And then he will hang by the door and he is watching you.
So then you can’t do anything really because it is too much trouble. You know where I love, I used to love doing dried flowers, baking, all kinds of different things, you are very limited. You have to do it while he is still in bed if he is not at the day centre. Weekends, Saturday is okay because he has a lie in on a Saturday. He has heard people talking that they have lie ins on a Saturday and years ago I would have said I would never leave him in bed past 9 o’clock ever. Now I will leave him in bed as long as he likes [laughs]. You know, usually the latest is about 2 o’clock when he gets up but he needs a lie in because people have lie ins on a weekend. Well that is fine you know, because I can have the kitchen and it is not that because he is making drinks all day he is spilling stuff up all day and you are cleaning there and then you come out and then you go back in later and it looks, and you thinks oh my God and it is not a bi, you know there is milk, there is coffee and it is mixed and he drinks weird, he drinks cold coffee sometimes at the bottom with a spoon in the cup and you know, you walk in and you see this and you think, and the bin has all got stuff. It is horrendous.
And of course the bathroom is straight across and he loves bathrooms as well because obviously they have got taps and I think he likes the mirror too. So you know if you get him out the kitchen he is in… and you can see the bathroom here is straight across. So you can’t get rid of him [giggle]. And I did have a thing when I first got him home that I had the sofa, I had the other stuff in here and I made that a bedroom for me but it is impossible because at night Brian is in the corridor there and it shadows with it being such an old house and he is moving his fingers and you are trying to watch television or you are trying to read and all you see are these fingers going…. It drives you made. It really does. So I thought I can live without that.
I have actually got him now that at night he will come in here. Not every night. On a Saturday night he will come in the sitting room to me only on a Saturday night, just for that an hour and a half, that seems to be regular now. But on an ordinary week night if I put him UK Gold on he will come in here and watch Fools and Horses and Open All Hours. We have been watching that about two years now. I just hope UK Gold don’t take them off, you know, or if they do they put Norman Wisdom or someone on, because he quite likes Norman Wisdom. So, but it is getting him out of the kitchen.
Parents talked about certain activities that their children didn't enjoy. Some of the children didn't like playing football often because they interpreted the rules of the game so rigidly they would become upset with other children (see‘Fears, anxieties, sensory issues and meltdowns'). One parent described how football stressed her children because they couldn't kick the ball or throw it. Another parent said that her son didn't like the rough and tumble of sports and preferred “gentle, quiet activities”.
The activities the children enjoyed were activities that many children and young people like. The range of likes and dislikes discussed by parents, shows the ways in which children on the autism spectrum are very different and enjoy different things.
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