Two areas that parents we talked to consistently discussed were eating and sleeping.
Many parents highlighted eating and mealtimes as everyday activities that were difficult. Many of the children would only eat a limited range of food such as chicken nuggets, chips and crisps. Some were fearful of choking and would eat only soft food or food that was cut up in particular ways. Other children found eating difficult because of sensory sensitivities and they would not eat food that was a particular colour such as red, yellow, green or white or of different textures (see ‘Fears, anxieties, sensory issues and meltdowns’). One parent gave her son Complan to supplement his diet because his taste buds were very sensitive and he found eating various textures very difficult.
Amanda, a part time yoga instructor, and her husband have two children; Louis aged 5 and Georgia, aged 3. Ethnic background/nationality: White British.
Have you changed their diets or tried anything like that…?
No. It is something I have thought about and I have read about it and I have sort of tried a little bit but Louis is very sort of rigid with his diet. There are only certain things that he will actually eat and it has to be the brand. Like if he likes Walkers crisps it will be Marmite flavour and he won’t have any others and if you try giving some others but not having them in the bag he won’t eat them. He needs to see the bag and for a long time he only ate noodles and what me and my friend called autism chips; the fries to go. They are in a box and they are in little compartments and every chip is the same width, the same size and you know that was all he would eat for a long time and we are gradually bringing other things in.
Jacqui, a full time carer, lives with her seven children aged between 23 and 10. Ethnic background/nationality: White British.
So now I have to be honest I couldn’t tell you what normal, inverted commas, ten year old does or eighteen year old or fourteen year old because you know this is the life that we lead now. And a lot of the times that is where people fall short when their child is being assessed because our normal becomes very, very different, but you don’t know it. If you adapt your environment because your child only wants a line of pencils on the floor and therefore you hoover around it and don’t think anything of it, that is actually quite unusual in other circumstances, but it is not something you would ever tell a paediatrician or a psychologist because you are so used to things like meal times.
Well our meal times are bizarre but they are not to me. Nothing is allowed to touch on the plates for some of them. You know they can’t have bits in. Sara only has things that are white; she won’t have things that are different colours. Luke only has great big mixes of bright colours. And then that is beside Sara being vegetarian, the boys both being allergic to eggs, being gluten, dairy, and casein free, all of the things.
But all of the like quirky little bits you just adapt to. I don’t really think very much of it, you know, I wouldn’t dream of putting gravy on anything of Ben’s because it would mix food up together and he would be heaving. But those don’t come out in doing block tests and tick charts and things like that. Those are just part of everyday life that I suppose the medical profession or the education profession will never see unless they go into the house and then you forget to even mention those kind of things.
Other parents described how their children lacked motor skills and could not use a knife and fork, or they would use a knife and fork only in certain settings. Some children preferred to eat with their hands.
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.
There are certain things he hates. He won’t eat peas. I don’t know why. He won’t… yes, so we have to, he can’t use a knife very well so I really have to cut the food up to make it… If I want him to eat and I obviously do I have to make things really accessible to him so we have lots of … we always have food that isn’t fiddly to eat. We always have it… I always make sure that the things are cut up so … but not things like potatoes because it is important he also knows how to use a knife, so that if we go out to eat, everyone is not looking at him, thinking ‘oh look at that, look at that teenager. He is not eating properly. He is making a right mess’ because he does like going out to eat. It is a social thing, you know birthdays and things we would go out and he loves it, but … so it is important that he does know how to eat properly and use a knife and fork and sit at the table. But that is difficult.
His favourite food is things that he can eat with his fingers, on here, on the sofa and that is how he would eat all the time and so it is difficult for me, because I want him to eat and yet I don’t want him to sit in here and eat because I think he has to have a social awareness that he should eat at the table. That is very, very difficult. And some things he will not eat, he used to eat them but now he doesn’t. He just has, he won’t even like them on the table, things like bananas and grapes. He won’t eat peas. He can’t have anything with strawberries, just anything, anything strawberry, he won’t have anything like that. But it is quite difficult. It is a struggle actually hm. He likes…. When he likes to eat something he would eat a whole packet of things. You know, I don’t really know how that has come about really, but I think he would rather eat a lot of one thing than a mixture. I don’t know. I don’t know if any other people have that, but that is what Sam would like to do and he absolutely loves chocolate tea cakes. He would eat a whole packet of them in about two seconds. He loves them. And I don’t think that has got anything to do with autism. I think that is just that is what he really likes but he would eat a whole packet of them.
Age at interview:
Jane and Dan, both students, have two children aged 4 and 3. Ethnic background/nationality: White British and Black Carribean.
Jane' Eating is a bit more technical because he takes a long time to eat anything and he is very sort of slow. And you have to pre-empt what he is going to eat so he could actually eat something because he doesn’t like certain things, and for one period of time all he would eat was Weetabix [laughs] with milk. And he had Weetabix for breakfast, dinner and lunch, but now he has a little bit more of a varied diet and he loves fruit, he loves raisins, he also loves sweeties, but we try and tell him that he can have some sweeties later, when we are out anywhere, although he will kick off won’t he if he can’t have sweeties right now and there. So he is getting better, but there is concerns about his weight and his height and not growing.
So … but he is very messy still. Very much like a bit of a food fight. If he has had beans for breakfast, you will know, it is all down his top and he does like you to feed him. So he is sometimes like a baby and he likes you to cut it up and feed it into him, because he gets fed up I think of trying to eat, and it is so slow and everybody else has got up and left and he gets a bit frustrated by that. So I do feed him. And he does… we started off with finger foods at first to get him to eat. And then we went on to just what we eat.
Dan' Mash and all that.
Some parents thought their children’s diets were very limited and raised their concerns with GPs or nutritionists, but the children appeared to be healthy and they were told not to worry. Some parents thought that their children were trying to have some control over their lives by refusing to eat particular foods or use a knife and fork.
Caron, a full time carer, and her husband have two sons; Leo aged five and Peter aged 2. Ethnic background/nationality: Mixed race.
What about his diet? Have you tried any sort of change in his diet or anything?
I have taken him to a nutritionist and everything. I have tried everything. When I went to the nutritionist he was like, why am I even here because everything he said I had already tried. I tried letting him choose what he wanted for dinner. I tried letting him cook it himself. I tried turning the TV off. I have tried making him pretty patterns, having a play day, like having a knife and fork in our lives, I have tried it all. Nothing works. I have got to the point now where I can put stuff on his plate that he doesn’t like and he will eat around it. Before it couldn’t even be on his plate, you know, so I am making progress.
So what does he like to eat then? Chips?
Chips. He likes chips and he likes turkey drummers. Occasionally he will have the odd bit of chicken but it has to be in a curry sauce. He won’t just eat dry chicken, you know he likes to have gravy on the side that he dip into. If it is on his food he won’t eat then. You know it is the one area that he feels that he feels that he controls. Although he doesn’t realise he controls his bloody everything, you know, so he has to choose it all. Every day I have to say it, “What do you want for dinner?” because if I don’t and I get it wrong, he won’t eat anything then. You know, so, he eats chorizo sausages sandwiches every day for lunch. He has a sandwich box every single day [laughs]. It is quite boring. He eats bananas. That is the only fruit or veg that he does eat. He eats yoghurts and milk and Weetabix and that is all he eats, every single day, and that is all he has been eating every single day since he was about one.
A few of the children ate everything they could find including toy car wheels, raw chicken breasts and raw sausages. In a few cases this was so extreme that parents had to keep food securely locked up. One mother had a fridge in her bedroom because her son enjoyed eating and did not understand when he'd had enough while other parents described locking the kitchen cupboards. One boy had several trips to casualty when he was younger because he ate glass, bleach and the buttons off his clothes.
Sleep was an issue for many of the children and some parents described how ‘sleep deprivation’ was one of the most difficult things they had to deal with. Some children found it very difficult to get to sleep at bedtime while others woke early in the morning and were ready to start the day before dawn.
Sandy, 38, lives with her two sons and is a full time carer. Ethnic background/nationality: White British.
Joseph when he goes off to sleep, and sometimes it might not be until ten or eleven at night bearing mind he is eight years old, he will sleep absolutely solidly through. It is very rarely that Joseph will wake up in the night. But the trouble is when he wakes up he won’t go back off to sleep. I mean if he wakes up, he normally wakes up, sort of five or six but on the rare occasions where he does wake up in the night then he can be awake from two and stay like that.
Whereas Adam will actually go to bed quite nicely but he can be up three, four, five times in the night and he has just recently come out of ‘pull ups’ and we did find that if he woke to go to the loo in the night, he would be great, and the bed would be dry, but because he had absolutely convinced himself that he had wet the bed, I would have to change the sheets and that was happening three or four times a night. And Adam is a much lighter sleeper but I must say last night he did one of his annual blitzes and he slept through from half past five yesterday afternoon until 6 o’clock this morning. I just couldn’t believe it. It was great. It only happens once a year.
Age at interview:
Kirsten lives with her three children aged 9, 7 and 4. Ethnic background/nationality: White Scottish
Since he was born he got up at 4 o’clock in the morning. Occasionally he will lie in to the back of five, but 4 o’clock has been his time for waking up. So last summer, I took him to [centre] and we have been working on sleep, so gradually getting a wee bit more sleep but then come the lighter nights and lighter mornings, it has kind of knocked it off again. And because he has such sensitive hearing, he can hear the birds, he can hear sirens, he can hear somebody cutting their grass in the evening two or three streets down, you know he hears a lawn mower that we haven’t noticed so he struggles to get to sleep. But we are working on that. Bless him!!
He is on fish oil, you know to help him, to calm him down a bit, help him sleep, but he still can wake, yesterday we were up from 3 until the back of five and then he dozed him but the girls were then getting up the back of six. So I think we have probably only had about half a dozen full nights of sleep since Andrew was born in seven years, and people say, “How do you do it?” But you just get used to it but when he was small that really, really got to me and when I was getting up to feed Hannah as a baby and things that really got to me, the sleep thing. And another mum who actually works in the chemist shop here, whose son has autism, he is a teenager, she said, “Well you will just get used to it. I have been up doing it for how many years, from three o’clock each morning. You just get on with it.” And so you do.
It is probably harder in the winter when it is freezing cold to have to get up at 3 or 4 in the dark and see what is wrong, see if you can put some music on and get him back to sleep. He likes listening to instrumental, like Bach and classical stuff like that to help him get back to sleep but sometimes it just doesn’t work. Sometimes we arrive at school and they say, “Oh Andrew, you are looking lively. When were you up today?” And you say, “Oh 4 o’clock actually.” But I think that is why he struggled with afternoons at school, because he was just tired and grumpy. He is definitely a morning person.
Some of the older children were still in nappies and this could wake them at night, or they were just out of nappies and conscious of wetting the bed. Some children’s difficulties with going to sleep were related to their fears and anxieties (see ‘Fears, anxieties, sensory issues and meltdowns’). Some had nightmares or were scared of the dark. The children heard voices, saw monsters or colours which disturbed them and parents had to lie down with them until they fell asleep.
Some children seemed to need little sleep. One mother described how soundly her son slept every night but several children slept in their parents’ bed for several years.
Mike, an insurance broker, and his wife have four children aged 28, 27, 18 and 14. Ethnic background/nationality: White British
He is good at sleeping. He would go to sleep at about 10 of a night. He goes to bed. He might not go to sleep for about half an hour. He sleeps on his own. He used to sleep with us. That was another problem; he wouldn’t sleep on his own so he slept in our bed. And if he slept in our bed I didn’t sleep in my own bed for about two years, you know, very good for the… what is it called? You wouldn’t have many kids if you had a lot of autistic kids, because birth control, it is a good birth control method. But no he sleeps on his own now. And he is in a nappy of a night, but he doesn’t wear them of a day. He is okay. That is actually the one word he says clearly, toilet. He can say it. It sounds like I have just said it, toilet. You know exactly and he goes himself and he is okay. He goes to the toilet. But he does have a nappy of a night which occasionally if he wets himself it wakes it him up and then… but he is good and he will go back to sleep and he will sleep until about half seven, eight o’clock. So he is not one of these kids who wakes up in the night, all night. He is pretty good. I can’t complain there.
Parents used different strategies to try and help their children sleep better. A few parents used medication, such as melatonin (see ‘Medical and dietary interventions’) and felt that they could cope better during the day if their children had a good night’s sleep. One mother, whose son was on melatonin described how;
He sleeps better, yes, he is still a bad sleeper and he still sleeps with me a hell of a lot, much more than he should do. He is, you know, in the past he has suffered nightmares, he is a fretful, fitful sleeper. He has heard voices, he sees colours so again it is all linked with his anxiety and everything and the paediatrician just thinks he needs very little sleep.”
One mother gave her children story CDs to listen to, some parents tried to reduce the time they lay down with their children by five or ten minutes at a time and one couple had given their son a television in his bedroom which helped him to settle.
Some children needed to have rigid routines at bedtime which could last up to two or three hours and often involved asking a series of questions about things they were afraid of, such as thunder or death.
Dot, a former social worker, is now a full time carer and lives with her son aged 15. Ethnic background/nationality: White British.
He has routines that he has to go through so one of his fears is disease, death, dying, so of a night time he is very reluctant to lie down and go to sleep. So I have to go through a one and a half hour to two hour routine with him to get him to lie down and that will involve an exact time when we have to go upstairs. He will have to sit by me. I will have to play a record for him, then I will have to play a record for me. He will then do his teeth. Then he will come back. When he is actually in the bed there is still a routine. I have to take his socks off after I have fluffed one pillow, not two pillows. He has to have everything positioned properly. He has a drink by his table that has to be in a particular place. If it is even a few centimetres off he moves it. And the whole room is like that; it might look like it is untidy but he knows where everything is and he knows he doesn’t want you moving it.
So he does that then he has to talk to you while he is lying on the bed. Then you have to stay upstairs while he is lying on the bed, because basically if he stopped breathing how would you know? But the fact that I would know anyway doesn’t occur to him. And even if you say to him, he doesn’t accept it. He thinks if I am in the next room then I can help him. So I have to stay there until I think he is asleep and he will often shout across conversations and I have to keep telling him not to talk. And this on a good day, this is when he is in school because when he is in school he is happy because he has got a very structured day.
He asked me can I have a timetable at home for everything, but you can’t because if change anything it causes major problems and I don’t want to live by a timetable. So you know I will try this… when I tried not to carry out his routine for putting him to bed or I have tried to reduce it or I have tried to alter the song because apparently he knows, I didn’t know, but we had to listen to Bohemian rhapsody 96 times before he could stop that song playing, not on one night, thank goodness, it was over 96 days, but if you try and alter anything he doesn’t sleep and he can get very tearful. Now if you do the routine you might be lucky, he might sleep all night.
It used to be hours, now it is about one and a half hours. If he has got a cold or anything, you get no sleep all night. But you know I am used to it now and I will continue to try and decrease it. But as you can imagine he doesn’t get invited for stay-overs. He doesn’t want anyone else staying over. It is not normal behaviour but it is normal for him. That is what he has to do to get to sleep, so I have to do it.
Age at interview:
Tracy, a school assistant, and her husband have one daughter aged 19. Ethnic background/nationality: White British.
She doesn’t sleep. She has never slept from when she was a baby, a very tiny baby and we had her on melatonin for a year just to get her through her GCSEs but I was so scared she would become addicted to that. Melatonin is a sleep drug, which can only be prescribed by certain doctors in this country because it has only just become licensed and… but I didn’t like the idea of that. We done it to get her through her exams. But we’d go to bed at ten and during the course of the night we could get woken up about five times [sigh] and she will come in and she will say something along the lines of, “In three weeks time on Sunday, what are we having for dinner?” “I don’t know.” That is the quality of the question. It is nothing urgent. It is nothing that can’t wait, but she doesn’t know that. She just comes and asks. Or she will say, “I know what I meant to tell you, three months ago on the bus I saw so and so and so and so.” And it has just come into her head, so there and then she has to say it. She can’t have the thought process of waiting until the morning. So I supposed sleep deprivation is the hardest, the hardest thing. And that is like nineteen years now.
Age at interview:
Tony, a market manager, and Alison, a dinner lady, have two children; Fiona aged 13 and Nathan aged 10.
Tony' He never slept Nathan didn’t. He never slept. He used to get in bed with us from about the age of about one and it progressively, as he got older it got earlier until at one stage he was getting in bed with us at about 11 o’clock but because we had been running after him all day, you need a night’s sleep, because he absolutely tires the life out of you.
Alison' And he would either sleep with us or one of us would have to go and get in bed with him.
Tony' For instance on his 6th birthday, you know, all the psychologists said oh you shouldn’t put a TV in a child’s room. It is bad for them and all this, that and the other so we thought stuff it, we will put a TV in his room just to see what happens.
Alison' Well we did that….
Tony' And ever since we put a TV in his bedroom stayed in his own bed.
Alison' He didn’t sleep for six years.
Tony' Just stayed in his own bed. Put TV in his room and we never got a wink out of him.
Alison' The reason we did it is because Fiona had got a TV in her room and he used to go and sit on her bed and watch it didn’t he?
Alison' And we thought right for his birthday we will put a TV in his room.
Tony' For the sake of a hundred quid from Asda we will give it a try and see what happens.
Alison' And he absolutely loved it. Didn’t he? And that’s it, ever then he used to go to bed at night, put the telly on and fall asleep and it got, we got to the stage where he would fall asleep watching it, so we would have to go in and switch it off. But then now, I mean when it got to the stage where it was just sort of ‘oh have had enough of that now’, switch it off and turn over and go to sleep and we thought why couldn’t we think of that before? I can’t believe having a TV in his room has made him go to bed and go to sleep.
Tony' It goes to show that listening to professionals isn’t always a good idea. You know.
Alison' Well I know, but the thing is you know you will do anything for some sleep you know and you feel rotten when you have had no sleep as a lot of people know and you will do anything to get some kip.
Tony' The world is a strange place when you have not slept for three days, you know. I am sure you know with five kids yourself. So …
Alison' Absolutely. As a lot of people will know. Yes.
Tony' Absolutely yes.
Some parents discussed how their children’s sleeping patterns had improved over the years. Some of the children had slept very poorly for their first few years - that had been very difficult for their parents. One mother said she and her husband were like ‘a couple of zombies’ for a few years, but over time the children learnt to sleep on their own.
Nuala, a software engineer, and her husband have a daughter aged 11 and a son aged 9. Ethnic background/nationality: White British
He is very, in some ways, he is more like a toddler really in some things and fears are the kind of thing that he can’t really handle things that other 9 year olds would probably have overcome. He still gets very frightened of the dark and we have now managed to learn, teach him to sleep initially on his own, but if he wakes up, he has to have a sleep, he has to go to an adult, so that always one of us has to be on duty every night for him to come to, someone to just cuddle with or to put him back to bed. And we can just about get him back to sleep in his bed, but it is still very difficult to overcome fear.