Parents of children on the autism spectrum often worry about what will happen when they're not around to provide constant support to their children. Ideally they would hope to prepare their child to live independently. Developing their children’s self help skills, such as getting dressed, personal hygiene, learning the value of money, cooking, cleaning and so on, was a key objective for some of the parents we interviewed. In keeping with the range of abilities on the autism spectrum, the levels of self help skills parents discussed in relation to their children varied widely. Here we focus on the parents whose children were in their teens and older.
Some of the obstacles to the children developing self help skills were related to sensory sensitivities or the importance of routine to them. One boy, for example, could not bear the taste of toothpaste and other children did not like to have their hair or skin touched (see ‘Fears, anxieties, sensory issues and meltdowns’). Some children had difficulties with coordination, problems organising themselves and short-term memory problems all of which slowed their ability to learn to do things for themselves. As one parent said; “If you send him upstairs to pick something up, he has forgotten by the time he gets upstairs what you sent him for”.
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 wouldn’t have tantrums. He is not, you know, he is not a boy for screaming and things like that, but it is just his odd behaviour really and another thing he has, he has no sense of personal cleanliness or hygiene or what he looks like and I am really … because now he is fourteen it is really, really important and now he is changing and maturing and becoming a man, it is really important that he looks after himself a bit more. Like he sweats now so he has to put deodorant on every day and he never wants to. It is always a battle and he doesn’t like cleaning his teeth, he doesn’t like combing his hair and he doesn’t worry what clothes he puts on or what a jumble they are because he actually can get dressed now. He never used to be able to dress himself, but he will just put anything on and people will people judge you by what you look like and they will judge him and it is difficult to explain to him how important it is.
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.
This morning the sun wasn’t out so he will come down with a winter jacket that has got a fur lining, you know. I think I have thrown it away. He can’t do it. He had a bob hat when he was in the home. I think I have thrown that otherwise he would come down with that on as well. And then when it is winter and the sun comes out he will want to go out in a T-shirt, you know and it is okay but sometimes it's not. And you say, “Brian…” And then you realise he is never going to alter so now you just say to him, “No take it back Brian, don’t bother to argue, just take it back Brian. It is cold outside. Take my word for it.” I think we had an argument Brian and I, in so much as he doesn’t argue he just kept repeating the same thing, when he… it is about five weeks ago and he decided it was hot when it wasn’t and it was when he was off for a day and I couldn’t get through to him that it wasn’t hot, that he needed a coat on. He wanted to go out in a T-shirt. “No you can’t. It isn’t hot. It is cold.” And he was still muttering away that it was hot outside mum, when we were in the car and I am saying, “There is an old lady. See her with that hat on. See her with that scarf on. Well you should stop the car and say to her, take it off it is hot, you should have your sun glasses on.”
And then he looked at me, and he said, “Yes that is right, mum, we should do that.” And I thought, “Oh no.” It is that. And if I can laugh I am okay, you know, you can get round it but sometimes things are not funny. But he tries, you know, he can’t understand... trying to get him to use the microwave. He will use it but it is absolutely, he uses it every day, but he will put… you know if I fall asleep and I tend to, I tend to fall asleep 7 to 8 and then I am awake for hours, he will cook a packet of bacon and he will put it on for 30 seconds and he will have ate it raw. Well it will be and I know because I wake up and I have got the smell and you can’t get through to him what time it's on. I don’t think he knows hot and cold. It doesn’t seem to bother him with food, whether it is hot or cold. I don’t think he even notices taste half the time. I don’t think he knows if anything is good. He puts ice cream in the microwave and melts it, you know, its got to be, I don’t know why ice cream had got to be melted. I have not worked that one out yet. I was just wondering then, but I don’t know.
Learning the value of money was an issue for the parents of older children or adults. One mother whose daughter lived independently described how her daughter managed her finances and paid her own bills but usually ran out of money by the end of the week because of her interest in collecting porcelain figures.
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 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.
One thing that we have been trying to do is to… it is important that he understands money. As he is getting older he will have to have his own bank account so we give him some money and we wait outside McDonalds. He can go there about three times a year. It is a special treat to go to McDonalds and we watch him and queues up and one day I gave him I think it was £2 and he was going to get a hamburger. I think this was probably about three years ago and we were outside watching him very pensively and he came back and he was really, really upset and I said, “Well where is your thing?” He said, “The man wouldn’t let me have it.” I said, “Well why not?” And then in the end we found out what he had done he had put his money in the tin. There is a charity thing, he put his money in there not realising and then asked for the burger and he couldn’t pay for it and he couldn’t get his money out. He just didn’t understand why he couldn’t have it.
So that is a bit, that is something, that it's quite difficult for Sam to understand money. I don’t know how we are going to get round that. He doesn’t understand numbers really I think, it is not a money problem, it is more the numbers and numeracy he doesn’t understand. He doesn’t understand the difference between five and fifty although we could put five something down and may be fifty and he can see it is more but he can’t work, he doesn’t understand why there is more. I am not quite sure how we are going to get round that when he wants to be a bit more independent you know because when he is 16 or 17 he is going to have his own bank account and he will have to try and be in charge of it and that is something we have got to, you know, try to get him to understand really or have some knowledge about really. But it is quite difficult and I don’t know how we are going to do that if he doesn’t understand money.
Many parents talked about their children forgetting to shower, wash their hair or clean their teeth. Parents had to constantly remind their children to wash or clean their teeth or change their sheets.
John, a civil servant, and Lynne, a teacher, have two sons aged 28 and 32. Ethnic background/nationality: Welsh.
What is he like in terms of self help and road safety and looking after himself?
Lynne' He can do most things but never alone. He always has to have somebody there, as I describe it, pressing the button. If you don’t press the button it doesn’t happen. So he can do most things, he can shave, he can wash, he can dress, bath himself, he can make sandwiches, he makes cups of tea. As long as you are there, you know, just reminding him, he can do it but the minute you step back out of step, he just stops. So this is the, this has been the main thing throughout his education, it always seems to be the aim to support a child and then gradually withdraw the support so that in the end the child can function or do things on his own. With Gavin’s particular disability, no way. It can never withdraw. The particular support he needs he will never be able to function unless he has got somebody there just pressing that button. You don’t have to do things for him, you just have to be there to …
John' If you keep reminding him he will carry on doing it.
Lynne' Have to keep reminding to carry on doing it.
And what about when he is out, can he sort of cross the roads, or…?
Lynne' No, not without somebody being there.
John' Yes, I mean we have slightly differently attitudes between us. I am more willing to take a risk with a Gavin than Lynne is basically. I still have to admit that crossing roads is a very dicey business as far as Gavin is concerned.
John' On what would be an easy road to cross, yes, I would trust him to do it. He will stop, and you know, look in both directions.
Lynne' Yes, because I send him out to the post box up here, don’t I?
John' Yes crossing one road.
Lynne' …which involves crossing a road.
John' Yes. But you if he sees any moving car from a distance he will not cross the road. He cannot predict from how far away a car is and how fast it is travelling. He has no sense of how long it will take to get to him relative to the time it will take him to cross the road. So you know he will play ultrasafe but there is always the danger that he might completely forget to do anything, you know, to look right or left and recognize that there is that possibility of danger with Gavin. …So no, we wouldn’t really trust him to cross roads.
One mother said that her daughter washes obsessively but then puts on dirty clothes because of the “nice safe structure” of familiar textures and smells. Hygiene was an issue for girls when their periods started and they did not dispose of their sanitary towels effectively or change their bedding regularly.
Tracy, a school assistant, and her husband have one daughter aged 19. Ethnic background/nationality: White British.
And she is hygiene is not a very good thing. It is not a nice topic, but I think her hygiene, in autism generally they don’t like water and it is to get her to bath or to shower is more, in the later months has become a forceful thing. It is not willing and it is not readily we can have the tantrums and at 19 she knows full well if she wants to go to the toilet but she does stand there and wet herself sometimes and she will wet the bed. And I know that she knows, it is not a thing, that it's disability that it just happens. I know full well. And she knows and then she tells me she forgets, she knows she wants to go and then she forgets so it just happens but I don’t know. Maybe that is true. But going back from that onto the periods thing then yes, I have known to wear a sanitary towel for two days and I have had to say you know, and it is a forceful thing to get her to know that she has got to change that and it might be once every couple of hours, let alone every couple of days to get her to understand, but be it right or wrong I have a couple of times had to manhandle her not in a very violent way, but I have had to be a bit forceful and to make her, for your own hygiene and her own health to realise that she has got to do these things and I will say it is a bone of contention [laughs] in this house . She claims she is too busy, she has got too many things to do and that is the last thing on her list, bless her, but yes, it is not a nice process.
A few of the young people were still in nappies during the day or just at night and a few other children would occasionally not get to the toilet in time. Hygiene in the toilet was also an issue.
Jacqui, a full time carer, lives with her seven children aged between 23 and 10. Ethnic background/nationality: White British.
But these are all the aspects of day to day life that don’t fit into the educational criteria and they don’t fit into any kind of medical or mental health or anything like that. But things like going to the toilet and washing and wiping your bottom and all these things and Ben when you say get a little bit of toilet roll, he gets this much and of course you can imagine what happens after that because he doesn’t like dirt and his hands are all over the wall. And these are things that you don’t really even take into consideration if your child has ordinary understanding or they are not very literal. Whereas you have got to really be careful what you say and how you are saying it. I said… Joe was.
Some parents, who felt that their children’s living spaces would be a “health hazard” without their intervention as the children did not clean up, they worried about them managing to live independently when they were older.
Cooking and cleaning
Parents of the older children described how their children could not cook and did not pay attention to sell by dates, check that food was cooked effectively or remember to turn off the oven or the hob.
Daryll, a special needs teacher, is divorced with a son aged 22 and daughter aged 19. Ethnic background/nationality: White British
You see I am trying to say to the university, she had got to have a balance between academic life which is going to take her up a lot, looking after herself, which is an absolute nightmare. I mean she came out to me a few months ago, with a chicken that, a cold chicken that had been in the fridge, mostly eaten, been in the fridge I knew for ten days, but I find it difficult now because I have got arthritic knees, getting down and clearing out the fridge. And I said, “What are you having for your meal?” So she said, “Well I have put that chicken in the oven.” I said, “What chicken?” She said, “The one we had, oh,” she said, “When so and so was here.” I said, “That is nearly two weeks ago.” She said, “Well I am just warming it up.” I said, “Well go and get some salmonella darling, just inject it.” She said, “Why is it bad?” I said, “Yes.” I said, “You can’t do that.” “What do I do with it then?” “Throw it away.”
But the number of meals that just get thrown away, because she will load the fridge, if she thinks about it, I mean I found three on the floor the other day, which had been there for ages. She will load the fridge but she won’t get the back front. She won’t do it that way. So I said, “Somebody at university is going to have to check her fridge at least twice a week and remove whatever is bad,” because she won’t look. She said to me, “I don’t do due by dates.” And I said, “Well you are asking to kill yourself.” I mean she sat there once with a ready meal at lunch time and she said, “Is this bad?” So I said, “Well I wouldn’t know, because I don’t eat whatever it was”, she was eating. So I said, “Do you think it is bad?” She said, “Yes.” So I said, “Well then throw it away.” I said, “You don’t risk getting food poisoning.” I said, “You have seen your brother have it, when we came back when we were at [holiday park] once.” And he was actually out of it for six days. I said to her, “You know what food poisoning is like.” I said you just don’t want it.
Age at interview:
Jane, a Senior Lecturer (Neonatal and Child) Nursing, lives with her son aged 14 and daughter aged 9. Ethnic background/nationality: White British.
Trying to get… he washes up but he can’t see the dirt on the plate. Or he will scrub for hours at a pattern on the plate and when he puts the washing up on the draining board he puts the glasses and the plates upwards so they don’t drain and all the water stays inside them. So I have been, since Christmas, every day, “John, do you remember what I said, about putting everything upside down when they drain, so the water can drain away and making drying easier?” “Oh sorry, mummy.” Which is so funny, because he just forgets, yet he understands nuclear fusion.
So the extremes are bizarre. When he comes home, he will he has to rest from the social stress of the day, and if he doesn’t rest he gets very tearful because he can’t cope. He is very organised about doing his homework although he doesn’t have an idea of the concept of time. So he’ll put his homework off thinking he can do it in five minutes when it takes five hours and then he gets very stressed because he hasn’t got enough time. But that is better than it was but we still have a long way to go. Although he understands time implicitly, he doesn’t understand the passage of time.
If I ask him to hurry he goes a lot, lot slower because he is stressed and because he has to think about what he is doing, and it makes him forget things and when he forgets things he gets more stressed. So in the mornings it takes him an hour and a half to get ready because he follows a set routine and he stims a lot, and his stim is to dance around in circles, which is great for him, it is his energy burning, but at 3 o’clock and 4 o’clock and 2 o’clock and 3 o’clock in the morning it is not nice. And in school it is not nice.