The autism spectrum incorporates a range of ability. Some people may have learning difficulties which can affect all aspects of life, from studying in school, to learning how to wash or make a meal. As with autism, people can have different 'degrees' of learning difficulty, so some will be able to live independently - although they may need some support to achieve this - while others may require lifelong, specialist support. The people we spoke with reflected this range and here we look at how they managed their everyday lives.
Stephen, an artist, lives with his mother and is 33 years old. Ethnic background/nationality: Black British.
So what is your favourite food then?
My favourite is chicken or turkey or roast lamb and roast potatoes added with vegetables.
Like a proper roast dinner?
And does your mum cook a good roast dinner?
Yes on Sundays. My favourite roast dinner I have on Sundays.
And is there any day of the week when you don’t draw?
Mum and I went to to go out to help me to do some shopping down the road.
What in the supermarket?
Yes. Supermarkets and my mum and I went to do some money at the Queensway and coming about two or one or two fifty, draw out some money and then do some, mum and I helped to do some shopping. And sometimes I put, make myself pizza put in the oven and fish and chips in the oven to make myself food and also make myself a sandwich at break time or at lunch.
That is good. And what about breakfast?
Yes. I make myself breakfast like a cereal and my mum makes me a big breakfast like scrambled eggs and bacon and sausage. Mum cooks it makes a big breakfast sometimes. Because I love breakfast, I love sausages and bacon and scrambled eggs.
Those people with high support needs had to be reminded or helped to do things like wash, shave, dress and so on. They needed support to prepare food, go shopping and manage their money. Some others who lived independently also had to be regularly reminded to bath or change their clothes. As one woman said:
“It took quite a few years to convince [husband] that he bath more than once every three weeks for example, and I still haven’t convinced him that when he has worn his trousers for three days he needs to put them in the wash, not back on the hanger.”
Another woman said that it had taken seven years to get her husband into a routine of going to bed at a reasonable hour and getting up at a reasonable hour.
Some of the difficulties people talked about were related to the way in which other people did not make allowances for them.
Debbie, a full time homemaker, lives with her father and is 44 years old. Ethnic background/nationality: White British.
People not accepting me or making allowances for me. I think that is the thing I find hardest about it. You see you are really only disabled by society because obviously when I had me mum I didn’t even feel as if I had an impairment, and she enabled, by the way she dealt with me I was able to cope with different things, but then when she died and it was totally different you know.
Well probably because I have a faith and because I know that god loves me as I am I do accept myself, so maybe things aren’t maybe as, I don’t know, maybe I don’t find it as difficult as others, but I don’t like people pressuring me and things like that, you know... But I suppose that the main thing is if people don’t make allowances for me I think that is what I find the hardest of all. The bullying, yes, because I am, with my impairment there were times when probably I don’t cope as well as perhaps you would, you know, I think that is the hardest part of Asperger's syndrome.
“I’ve put pizzas in the oven and completely forgotten about them”
While many people shopped for food and cooked very effectively, several people did not. For a few, who still lived with their parents, their meals were provided for them. Alex, who lives independently, is not allowed to use the cooker or other kitchen implements because she has an unrealistic sense of danger; she doesn’t see moving traffic as dangerous but is petrified of spiders, for example.
Alex is unemployed and single. Ethnic background/nationality: British
I’ve got like a plan and it’s got like every different microwave meal I could possibly buy, it’s got a card, and on that card it says what it is and how long it needs to be microwaved for. And I have kind of like a routine. So I get the meal out the freezer. Well I look on the list to see what I’m going to have today, because it’s all planned in advance. I get the meal out the freezer. The list is all Velcro, they’re all Velcro things. So it would be velcroed off, taken to the cupboard above the microwave where’d it’d be stuck on so it’s right above the microwave. The instructions are - somebody walking past…- the instructions are also on the packets. I’ve got two lots of the instructions. I put it in. Do it. And then take the sign off and then that would be done. But even that causes problems and I can go through two or three microwave meals before I get one that’s actually done right. Nobody know where I’m going wrong. Either doing it too long, not long enough or I put it in and then I forget I’ve done it. I’ve done things like put pizzas in the oven and then completely forgotten about them, until I’ve gone downstairs. Like you know, I’ve put a pizza in and then gone upstairs to play on my computer and it hasn’t been till half seven the next morning when I come down to get breakfast that there’s still a very black pizza cooking in my oven. It’s just, I mean you cook with me on a Friday. Have I learnt anything?
When you say your meals are all planned is that, do you plan them?
Yes. I kind of like choose what I want to eat and everything. So like Monday I’ll decide I’m having that and Tuesday I’ll decide I’m having that, and I usually do it like a week in advance and I usually stick to it, but then sometimes if I can’t be bothered then I just won’t eat. Sometimes it’s easier not to eat, especially if you’re having a bad day and struggling to concentrate and process stuff and communicate and everything. Sometimes it’s just easier not to try.
“I don’t know what to do with stuff”
Many people we spoke with had difficulties organising themselves and their lives - keeping on top of housework, remembering appointments, filling in forms. Managing money was a problem for several people. As Gail said, “I don’t always open my mail and sometimes I don’t realise I’ve got a bill”.
Sam is studying for a PhD. Ethnic background/nationality: White British
And probably even just on my own, I suppose, trying to live a practical life. If I want to do things like, sort of paying a bill, well the number of steps that simply takes to do that is really quite considerable, and it creates a pressure from trying to switch off my brain from whatever it’s previously thinking about, towards focussing on something like simply paying a bill. It’s really quite sizeable the number of steps it makes me take, where most people can do it instantly, but every single one’s a new challenge. Whereas the simple ease with which you can simply just sit there and think about whatever, or do whatever you want to do, whatever your mind’s particularly focused upon. That to my mind is one of the essences of autism. What really demarcates the autistic person from a normal person as it were, that sort of level of obsession, of course, there are other distinctions as well.
Age at interview:
Age at diagnosis:
Ian is 22 years old. He is single and is a student. Ethnic background/nationality: English.
So what’s difficult about everyday life that you need support? Would you know?
I think like when I read like, well I can read things, but it’s like understanding what they want and stuff, like you know if bills came through and stuff. Mum usually reads the stuff and obviously deals with these things obviously, when I read stuff, I just look at it, and put it away and don’t know what to do. Is what I always do, because I look at it and go oh okay then. Because it’s not important to me, I don’t bother with it, you know, so it’s that sort of thing with me.
Other aspects of everyday home management could also be difficult. People talked about how “overwhelming” organising home life could be to them. One woman with a family described how “I don’t know what to do with stuff, to organise all these things that I am supposed to do. I get a bit lost.” Another man said “I just forget everything. You know a lot of people say that but I don’t think it is quite to the same extent that I do… I can forget the most basic things quite easily”.
John, a former croupier, lives on his own and is unemployed. Ethnic background/nationality: White British.
There is a chap came over from [city] to see me, there is another research psychologist in the [university], a chap called name. He is quite a nice chap. He came over. He came to the house, walked in. First thing he said to me, “Do you have difficulty assessing, do you have difficulty knowing what to throw out what to keep?” Every time! I do because everything is somehow potentially useful. I am very reluctant to throw things away. I am a great recycler. I always keep boxes and bottles and things like that. But it is difficult to know what to keep and what to discard. Not just in a physical sense, but also in a sort of psychological sense. I notice my thoughts wander around all over the place. I think about mostly… unfocused thinking, my thoughts just wander around sometimes and don’t make sense... But how can you not think? I can’t just stop thinking. You know, you just can’t stop thinking really. I don’t know. How do you discard thought? How can you…? It is like I said earlier about words. I normally remember words very well. How can you forget a word you know?
I am all right at work because I have got nothing else to think about, but at home I have things to think about like all the domestic things like housework and laundry and shopping and cooking and trying to spend time with the children and getting myself to work. It is really difficult keeping on top of things and I I was all right while I was living on my own and all the things didn’t get totally upside down, but there are four of us now, and it is hard. I don’t know what to do with stuff, to organise all these things that I am supposed to do. I get a bit lost.
Is it a sort of organisation thing then?
Yes. I know what days I go shopping. And I am good at washing clothes, but it is when the mail comes in the morning and I think well I need to ring this person up or need to deal with that. And I can’t always do it straight away, you know, because I have got work and stuff like that and I don’t seem to be that great at going to work and looking after the house. I mean it has been a lot untidier and more chaotic since I have been working so much. It seems like when I had the time I didn’t have the money, and now I have got the money I don’t have the time, and I just can’t be everywhere doing everything all once. Its yes, it is organisational and I can’t have more weeks in the year to get extra stuff done.
Age at interview:
Age at diagnosis:
Tim is married and had two children. He works as an IT consultant. Ethnic background/nationality: White British
Tim' So for example if you say to me, “Right I want the bathroom cleaning.” It’s easy for me to walk into the bathroom and say right I can start at this and work my way through it and I know exactly what I can do. If you say to me something very vague, there’s too much, there’s too much… and it can be difficult to think am I getting this right compared to what you want.
Julie' Right, have a bit of a tidy round.
Tim' Yes. It’s too vague.
Julie' How much is a bit and how much is …
Tim' Because a bit to me might be totally different to what you’re expecting and you might walk in and not be very happy with the results. So it’s not that I couldn’t try and work out what my version of have a tidy around is it just might not match your version [both laugh]. And because of that you want to get it right so you ask the question.
Gail, who lives independently, has help from her father who comes over to help her tidy her house and organise things. She found it easier to ask people how to do tasks like laundry when she was in Canada because she found Canadian people generally more open and because she could come across as an eccentric ‘Brit’.
He has a degree in accountancy and is looking to get an apprenticeship in business administration. Ethnic background/nationality: White/British
Would you like somebody to live with you or would you like somebody to come in and…?
Well not live, not live with me no. But, you know, come in from time to time, you know, just ask, just ask questions. Because that’s, if you’ve got answers from questions that you wanted to ask, that’s what you need. If you end up with answers to questions about which you really couldn’t care less then that’s going to just confuse you more. You know, how do I get this stain off the hob? Why does it matter? You know that kind of thing. I mean if it was how do I get a stain off the hob? Use a scouring pad, this, that and the other, bleach cleaning fluid whatever. Those kind of things are useful. But the, it doesn’t matter approach is not the way to go. It isn’t the way we go.
Who would say to you it doesn’t matter?
Anybody who doesn’t really understand how difficult such tasks would be, because they’re more capable. They don’t see it from my perspective. It’s a completely different perspective and if you try it with someone who’s never ever been there. Never really understood the difficulties that come with relatively minor tasks then they’re not going to be sympathetic. They’re just, you know, I’m sure you can figure it out yourself.
Age at interview:
Age at diagnosis:
Mark, a student, lives on his own. Ethnic background/nationality: White British.
Well I think it sort of relates to the things that I don’t like, dealing with various companies not that they are my supplier any more, but having to deal with British Gas. Just chronically useless. I mean chronically, incompetently useless. The fact that you can’t a hold of them. They make it incredibly difficult to actually just pay them money and get rid of them. You know, it is silly little things, particularly like dealing with councils. Council Tax and such. You know, these stupid sort of trivial mundane things, and particularly forms. I actually loathe and despise having to fill in forms, particularly anything that comes from the government, because they are so incredibly badly worded, you know, I know it is a very common aspie thing to be very pernickety and particular about what exactly something means. And the levels of ambiguity in some of the things is just, it is atrocious.
You know, I have had, you know, various forms, and just sort of sat and looked at them for six months, simply because I just can’t face dealing with them because I don’t know exactly what information they want. You know, it is not clear. And I think things like that cause a lot of aspies an awful lot of problems. I have known several people who particularly in sort of applying for benefits and such and I think the sort of free bus pass thing, you know, they have had enormous problems doing it, because they can’t cope with the forms. And it is these silly tiny little trivial things that most normal people just completely take in their stride, don’t give a second thought to. Aspies, will obsess over each and every word and exactly what it means and end up sort of freaking out and not getting the things done. And losing out and then they do tend to sort of withdraw into a sort of little cocoon and they don’t want to deal with the rest of the world, because there is all these silly, tiny, little things that everyone copes with fine, or at leas they appear to, and then you feel like such an idiot for not being able to do these silly things.
Things like going to supermarkets, you know. I mean thank God for internet deliveries from the supermarkets. How much easier does that make life? Because I mean I used to before that loathe going to them. You know, that was the nightmare, and I wouldn’t really ever go on my own, you know, always sort of, you know, would basically wait and wait until, you know friends are going or, you know other family members as such. And then sort of go along, buy a ton of stuff all at once, so you don’t have to go back for as long as it is humanly possible. And I think in society, part of the problem is, people kind of don’t really understand why you can do lots of these amazingly complex things. I remember from when I was doing the astrophysics and you know, people were going, “Oh my God, oh you must be so clever. Oh you must be so clever to be doing that” because it has a fancy name. But yet, you know, you couldn’t do silly little trivial things like going to Tescos.
Age at interview:
Age at diagnosis:
Vicky, currently unemployed, lives alone. Ethnic background/nationality: White British.
Yes. But again, because I know the people I can go and do them but if if I had to make a phone call to say like to another group or to another person, I might find that difficult, because I would have to find out what department I would actually need, for to say if the house blew up or something like that, I would have to sort of like work out what department I need and that is where it will all start getting a bit… This is just an example, but you know what I mean. It will start getting a bit difficult because I don’t know the person at the other end and I don’t know if they would be able to help me and then they put me onto somebody else.
It would just go on like that, until you have actually found the right person and that can be frustrating, because you know where you want to go, you know what department you want to be but you know how they sometimes actually, if you have spoken on the phone, they will put you through to another person who might be able to help, and then that person can’t help, and it just goes in a complete circle. And that is when it gets really frustrating for people with Asperger's because they know what they want, but they can’t just say look. Sometimes they just won’t help you. They will put you on to somebody else, who can’t help you either and it gets so frustrating. Sometimes I just get so stressed and give up. And it is just things like that which I find so difficult.
Age at interview:
Age at diagnosis:
Daniel, 32, lives with his parents and is an unemployed poet. Ethnic background/nationality: White British.
I used to do these things like my hour books and sort problems like within an hour, or sometimes I only wrote sometimes the date on some of them. I didn’t really fill much in. And I really related… I think it was something on, it might have been QED. There was somebody on on the television and she’d I think she rate her days by ray of sunshine. She would like, like may be it was from one to a certain number, the higher the rays of sunshine the better day she had. And I thought that is similar to how I do things. Like systemising, like I used to what is it now, if it were 15 Celsius and below I would put a coat on, below 10 Celsius a hat. Above 20 Celsius sun cream. I used to have a little system for myself.
Of course there are sort of loop holes in that. It can be 15 Celsius but pouring it down and of course I couldn’t go out with a coat, because I couldn’t do it. But now I just... I judge it on how I feel at the time. Sometimes my parents do actually tell me to put a coat on, because I am 32 but I am like a little, I am like a child. Yes. Yes. So.
“I’m getting more used to going out now”
While some people enjoyed going out and had social lives they enjoyed (see ‘Friendships’), a few people didn’t like going out. This was partly related to organisational difficulties but also, for a few, about a fear of going out or a strong dislike of socialising (see ‘Communication and Interaction’). Miranda “felt like a leper” when she went out and thought this was because people thought she was different and because of her dietary requirements.
Mary is single and unemployed. She has recently graduated from university and does voluntary work. Ethnic background/nationality: White
The support worker is very, very helpful. I see her every week, every Tuesday for four hours from nine till one. And that’s really about like getting out more, and, you know, we mainly go to cafes, because I like eating out at cafes and for a while I didn’t do that, because I was just scared, but now I’m getting more and more used to eating out, going to cafes which I really enjoy. So we could go to many cafes in [town name] now. And I go on the train. I travel quite a lot now. I mean there are places I can go to that I never used to go to. So… you know, I go to [town name], I go to [town name], I go, I’ve been to [town name], [town name]. So I’m getting increasingly used to going on the train.
This with the support worker?
Yes, and I could go on the train on myself, just places like [town name] and [town name] and [town name]. Longer distances I like to have someone with me, because I get just very scared like going new places, for long distances. I do quite scared on trains when they’re busy, but… for me it’s more anticipation. I tend to obsess and dwell on things, but when I actually do them, I’m not so scared although I do have an obsessional phase sometimes after events. But I know they’ll always go, and they, and I know that I am in control. You know, I try and, I try and rationalise things, although sometimes it doesn’t work. Sometimes they do get out of control. But actually it’s the nature of having like obsessional problems. They just, sometimes, get out of control, no matter how irrational you know, they are, you can’t kind of like reason yourself out of them. All the time though.
Age at interview:
Age at diagnosis:
Richard is 22 years old, single and unemployed.
I go out whenever I want most of the time. I almost always have someone accompanying me. We’re working on my independent travel training. It’s a step towards being able to go out unsupervised.
Would you like that?
What sort of places would you go to?
The video arcade, the internet café, the library, the café and anywhere else I cannot think of off the top of my head.
And your travel training is that going well?
I think it’s going pretty good, thank you very much.
What sort of things would you find difficult about travelling on your own?
Crossing the road. Sometimes I might have trouble finding a place I don’t recognise. Judging how fast vehicles are going and coming on to me. And that’s all I can really think of.
Alex had the additional difficulty of an unrealistic sense of danger which meant that her home environment offered significant risks to her. She will think nothing of putting her hands into a hot oven and cannot judge the speed or distance of moving traffic. She now has a comprehensive care plan in place that helps her to stay safe. This includes forbidding her from going out on her own, though she doesn’t always stick to this.
Alex is unemployed and single. Ethnic background/nationality: British
It led on from the tests because I also had an OT come in and assess me, like my cooking skills and you know, domestic tasks, and she was quite shocked that, you know, I thought nothing of sticking my hands into an oven without oven gloves on, and you know, I burnt the tips of my fingers, and then the next time she visited I did it again. Because I just don’t learn from mistakes. So, then they spoke to like people who I lived with at the time, and they, you know, kind of explained that walking across a road, just don’t process what’s going on.
Because it’s so unstructured, I’ll suddenly think I want to decorate my bedroom. And again because of the unrealistic sense of danger, and risk assessment skills, I’ll do things like get a step ladder and put it on top of the bed, so I can reach the ceiling and obviously, you know, that can result in falling and other problems. So they’ve just allowed me an extra two hours of PA time a week to have two hours on a Saturday afternoon. And the care company that I can call in an emergency they also phone me at 9 a.m. and 8 p.m. on Saturdays and Sundays to check that I’ve done everything that I need to do and that I’m safe. So if there are any problems or I don’t answer the phone or something like that, then they know that there’s a problem and they send someone round. Because I’ve got… although I live on my own, I have got pretty much quite a hefty care package.
[Laughs] my care plan says I’m not supposed to, apart from to the shop which is literally round the corner and there’s no roads to cross. Although I still did manage to get run over going to it once. But no my care plan says that I shouldn’t go out unaccompanied.
Is that quite frustrating?
Very. Because as much as like my PA’s great and really flexible and stuff like that. If I wake up Saturday morning or anything and I’m going to run out of milk, okay I can go to the small little shop, but I can’t go right I’m going to go down to Tescos and I’m going to get some milk and while I’m there I’m going to get some bread and something else, or something else, or you can’t think oh I really crave a McDonalds and go to McDonalds or something like that. You’ve restricted as to when you can go out and when you can do things, to do… you know, even like thinking, you know, ringing up and making a doctor’s appointment. You have to sit and think well okay, who can take me that day, who can take me that day? And then that leaves problems like, because the doctor’s surgery don’t understand when you phone them up, that you know, you can’t go on your own. So they go, “Well we can’t give you an appointment this afternoon. It’s got to be this morning. We don’t give out the afternoon appointments until lunch time.” I said, “Well lunch time’s too short notice for me to get someone to come with me.” And they’re like, “Well you should get a taxi down.” And it’s like oh I could but is it really, you know, the best thing. So it gets very confusing for everyone.
Have you learnt, I mean you’re saying about your knives and your cooker and road safety and stuff? Have you sort of learned to be any better at any of this stuff or is it a complete no no?
[Laughs] I had a brilliant OT from the learning disability team, who worked on cooking solidly with me for two years. And by the end of the two years, we just about mastered simple microwave stuff. And every week I go and stick my hands in an oven or stick my finger in boiling water. You know, you test it. I just….
Last reviewed July 2016.
Last updated November 2012.
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