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.
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.
‘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.
‘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’.
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’.
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’.
‘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.
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.