Life on the Autism Spectrum

Autism & housing

Some people we talked with lived in residential homes or at home with their parents. Some live in independent supported living with paid carers, while others lead independent lives, either in a relationship, with their family, or on their own.

Richard lives with 'a lot of folk with less functioning autism' in a supported house.

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Age at interview: 22

Age at diagnosis: 2

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And do you live with your family or… on your own?

I alternate. I live with my family a lot of the time, but more of the time I’m with the folk at this supported living house that I live at, which is within walking distance from my own house.

And which folk do you live with then?

A lot of folk with less functioning autism than me.

So what’s that like, living with them?

Not too bad, but they can be a bit annoying at times.

Can you give me some examples of that?

One resident only ever talks about being sick. I find that rather annoying. There’s this other resident who’s overly obsessed with transport and that’s seemingly to be the only thing he ever really wants to talk about. Some of the folk are pretty high functioning, but not as high as me. [name]’s a good guy, although he has trouble understanding things. I’ve also got a flatmate called [name] who lives in the upper flats with me. He’s a decent guy, he’s pretty quiet and a pretty fussy eater. Well more of a fussy eater than I am.

“I don’t want to leave yet, I’m happy as I am”

Several people lived with their parents and did not anticipate moving out for some while. A few were hoping to move out soon, but worried a bit about how they would manage.

Miranda 'dreads the thought' of moving from the family home she has always lived in.

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Age at interview: 49

Age at diagnosis: 49

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How long have you lived here?

Oh all my life. I’ve lived here since I was born. So, I just really wouldn’t want to leave here. I would hate to leave here and I wouldn’t like, I wouldn’t like to live in [town] and just the thought of prospect of living in some flat would, it would be horrible because you’ve got them… you’re surrounded in a flat. You’ve got them like next door, you’ve got them above you, you’ve got them below you. I would just hate it you know. Here I just like it here, this is, I call it, it’s my safe haven, I don’t know what I’d do if I hadn’t got this house and I personally don’t know how I would cope if I had to leave here, because I don’t know. To be honest with you I would say, I’m hoping that wouldn’t be the finish of me, because I would hate the prospect of having to leave here because I’ve lived here all my life. I suppose really I don’t particularly like change, and I’m quite happy, as I am here, because obviously, I like my routine, I like what I do. I don’t like to step out of my routine.

Simon is happy with his parents and talks about the potential problems with moving, such as different smells in rooms.

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Age at interview: 22

Age at diagnosis: 5

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And are you happy living here with your parents or would you like to move out?

No. I’m absolutely happy here, because once again I’m used to everything that’s going on here. I think moving out, like a house or something like that, it would be a lot of hard work for me. Because what, you’ve got, you know, somewhere different, somewhere new, somewhere you’re not used to, and then you’ve got all the packaging to do, like moving in, you know, where you’re going to sleep, you know, different smells in rooms. You know, sometimes, you know, rooms, places smell a bit weird for us, you know, which may sound very strange to some people, but we have very high sensitivity in you know, smell, eyesight, and hearing and stuff. And sometimes there may be even a bit of noisey. It might be near a train station or something and that’s a nightmare, because obviously we have troubles with sleeping as it is, because obviously everything all going on and that trying to sleep is a bit of a nightmare yes. So I wouldn’t, I’d rather stay in an area that I know of rather than move elsewhere, yeah. Just, you know, help me feel relaxed really.

Russell recalls some of his experiences of living away from home and the support he would like in the future.

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Age at interview: 21

Age at diagnosis: 12

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And, would you see yourself staying there for the long term future or …?

I hope not, because my parents are absolutely fantastic and the one thing I wanted to do, is you know, let them be, live their lives. But again it’s one of these Catch 22s, because independent, independent living, I’ve given it a try for a year, and, almost everything that could have gone wrong did. I mean lessons were learnt but there are so many lessons that haven’t. So that’s more going to be a crash course than anything.

What sort of things went wrong?

Let’s see. I managed to set the cooker on fire. Annoy two of my house mates who happened to be vegetarians. I managed to annoy two of my housemates who happened needle phobic, which is a problem when you’re a diabetic, and, pretty much insulted all three of them without realising it. I managed to damage a lot of my body on items which are kind of based around the kitchen. I mean door frames. Big problem, [laughs] and for some reason I end up hitting the door frames a lot. But not realising where my limbs are, some [38.35 ?? pre-preception]. So I did that a lot. I still do, but hopefully not as much. One time I was defrosting meat and I put it out in the back yard and seagulls came for it, which annoyed one of my house mates who then blamed the cold that she got on me, which was annoying because she was coming up to do the [town name] half marathon. That’s pretty much just a couple of examples of what exactly went wrong.

And so again coming back to… you want to move out and leave your parents, is there some sort of support that could help you live independently?

To my knowledge, not anymore, because the general consensus of government health agencies is that, autism doesn’t matter when you turn 18. Once you turn 18 the support stops dead. If you’re a child with autism that’s fine. 15, 16, 17 you’re okay. You can, your parents can get you support. Once you turn18 you are considered adult enough to go out and do it on your own. Not adult, not considered adult enough to be given support. So like you can do it indep… well pretty much independently except for the support. They just stop the support and tell you, “Do it yourself.” That as you can probably tell, tell in my voice is very annoying. It’s very, very annoying.

What sort of support would you like? Would help you to live an independent life?

Well the first and foremost would be help for getting employment, because it’s pretty much, well it’s noted, I mean even the government are admitting that, I mean 15, I think it’s 15% of autistic adults are able to go into any sort of employment at all, and most of that is normally part time. So, financial security is top of the list. Second of all, would probably be, you know, be able to look after myself prop… you know, have cooked meals without blowing up the kitchen or how to hoover up without smashing your nice shiny new glass table. Those kind of, those, those small things make a big difference. But as I said, there’s nothing for it.

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

Mary is very keen to move out from her parent's home, but does not want to live in a residential home and is a bit worried about practical tasks like budgeting.

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Mary is very keen to move out from her parent's home, but does not want to live in a residential home and is a bit worried about practical tasks like budgeting.

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Age at interview: 22

Age at diagnosis: 21

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And is the social worker quite optimistic that you’ll be able to find somewhere?

Yes. Yes. I mean originally I was, I mean I would like, I would hope to move. I’d quite like to move somewhere like nearer to [town name] or something, because [town name]’s more interesting. Well it’s a kind of bigger place than [town name]. I don’t want to live in a very, very big place because I’m not too keen on really big cities. They’re just too noisy and chaotic, but at the same time I’d just like to have more of a sort of life where’s there kind of more activities that I’m interested in. I mean I’m interested in history and [town name]’s got more history societies than [town name] So I’d quite like to move to [town name]. But I mean there was a possibility of going to sort of a residential place in [town name], but I’m, I’m not, I’m not don’t really want to go there now, because I found out that they’ve got, that the people there are quite disturbed, and, so that’s you know, I don’t want to be in a place where the other, like people are very disturbed, who are going to be very noisy, you know. I wouldn’t like that. So …

I mean it would be difficult to move out, because I mean I’m not really very good with practical skills, like, you know, all this sort of home maintenance, and dealing with money, you know, like budgeting and, dealing with sort of just your every day stuff. I mean when my parents are away on holiday, they get all the food. I mean they leave me money so I can actually now go into shops and stock up when I need to, you know, that’s all right. But you know, it’s just two weeks. I don’t have to manage the whole house, and do a full, you know, home management stuff. So …

Paul I lives at home with his parents and is glad they don’t “baby or mollycoddle” him.

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Age at interview: 29

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Yes. Yeah. And one of the things they are very good at is they've, they… I don't feel like a child. My room is very much my own. I don't feel like a baby. They don't baby or mollycoddle me. You know, which I'm grateful for. And I don't have a dependency issue with them, you know, I don't kind of have any sort of co-dependency sort of issue with them where I kind of don't do stuff that I can do. But, you know, it's where the parent sort of does the martyrdom thing. It's very complicated. You know. Saves… it’s understandable why it happens, you know, dependent personality issues where a person is in this sort of symbiosis of the martyrdom of saving the person from doing anything. Makes the person disable themselves even more. And then they appear more disabled than they actually are. And then you get… I remember a story about a lady with Down's syndrome. For years, her mum used to do everything for her, until it, bless her, until she was 40. And she went into a residential care, and she found her doing the ironing. And the mum said, "You're doing the ironing." She said, "Why didn't you ever do at home?" And she just said simply "Because you done it." Simple as that. "You did it.”

“I’m not very good with people, so it’s infinitely easier to live on my own”

A few people were happy living on their own sometimes with some support either from support workers, or family members.

Alex has lived on her own for six months now, having had a full time carer living with her for around 18 months. She is renting a house from the local housing association and has had the house adapted with safety features in the kitchen and bathroom.

Alex's new carers didn't notice that she hadn't eaten for 13 days when she first lived on her own.

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Age at interview: 28

Sex: Female

Age at diagnosis: 3

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It started off really badly. I just transitioned from the learning disability team to the mental health team, because apparently if you haven’t got an IQ below 70 then the learning disability team can’t finance your stuff. So the only way I could get funding was to go into the mental health team, and that happened in September. I began living on my own in October. And, and I didn’t eat for thirteen days because there was no one around to cook for me, and although the mental health team were sending people in to check on me two or three times a day, no one bothered to ask if I’d eaten. So, it was 13 days before somebody realised that I hadn’t actually eaten, by which point I was actually getting pretty unwell.

So I actually went from like October to March. I think between October and March I ate 13 cooked meals. We worked it out and it was all, the only time I eat those was when I was with my day centre. Going out and doing stuff so that was pretty awful. There was things like sorting out medication because my carer would always go and collect my prescriptions. And things like that. And everybody kind of like forgot that I took regular medication. I managed to sort that out myself by using an online pharmacy by Lloyds but again I did end up going like a couple of weeks without any medication, which when you’ve got epilepsy isn’t really very good.

John's landlord can cope with the impact his irritability has had on his home.

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Age at interview: 47

Age at diagnosis: 45

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So you live independently?

Yes, I do, yes. Yes. I’ve lived independently for years, yes.

And that’s fine is it?

Well I wouldn’t say it’s fine. I mean I’m well adjusted to it, but it’s I mean, I think the, the biggest single problem is an organisational thing which is, I mean you can lump that into Asperger's, if you like, that’s what my psychiatrist does. He says that the you know, the components of my condition to do with concentration. To do with obsessional thinking, to do with organising things, he sees them as all part of Asperger's rather than any other distinct condition. So organising things in the home I find difficult. I tend to start a lot of things and not complete them for a long time. And you know, hoarding things in the home environment is difficult and again my psychiatrist sees that as part of the Asperger's Syndrome although I find that slightly curious.

But I think the biggest difficulty, in the domestic environment is the sort of irritability that you get as part of the Asperger's condition and obviously that can affect neighbours, you know, it can affect even the fabric of the property so… but those are real, real difficulties and I find I currently live in a housing association property where it’s professionally managed and somehow the landlord copes with those difficulties. But I think in a private rented situation it would be very much more difficult.

And when you say that the irritability affects property …

Yes.

Can you give me an example of that?

Well yes. I mean literally I mean I get not trapped, but, you know, I do suffer from a certain degree of obsessional thinking about you know, various conflicts that I’ve had with people, and you know, if you keep mulling ideas not particularly productively and somehow that raises your, your hackles, then you know, I can end up compulsively punching a wall, and that, you know, and damaging the plaster work, things of that kind. You know, which obviously need repairing you know, so, you know, things on that scale.

Sam used to hide in his room from housemates and would only consider living with postgraduates in the future.

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Age at interview: 26

Age at diagnosis: 24

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If I’ve got a friend I’ve got a lot of enthusiasm for them, and I like to spend time with them, and everyone else I’m just really, whatever. So I just usually if I actually talk to anybody in the house I always talk to one person and everyone answers just purely getting away quite simply. I don’t know I’m not very good with people. So it’s infinitely easier living on my own. Not having to hide in my room while getting hungrier and hungrier as they’re in the kitchen, no one shouting or slamming doors or whatever, at whatever time in the morning. I wouldn’t mind… I possibly… if I did live with anyone else again it would be with postgraduates I think, when I’m at university. Because they are usually much more mature and intelligent and interesting and they them to sleep before say 2 in the morning which is much more convenient for me. And they don’t shout so much. They’re not usually racist either

Last reviewed February 2020.
Last updated July 2016.