Alex – Interview 04b
Age at Interview:
Age at Diagnosis:
Alex is unemployed and single. Ethnic background/nationality: British
Brief outline:Alex was diagnosed with classic autism aged three years old. She lives independently in an adapted house, with some care assistance. A few years ago she was injured in a road accident and, as a result, now has epilepsy.
More about me...
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.
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.
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.
I couldn’t follow my routine that I, you know, I’d get up and turn my computer on, because I get up quite early and usually sit on my computer for an hour before I do anything. But usually I keep an eye on the clock and think alright, you know, you know, it’s half seven, that I need to go and have a shower and do this and do that, but when I was ill, it was just like, I kind of like sunk back into a world of my own and just did things that made me feel comfortable like repetitive watching of DVDs and stuff like that, whereas normally I would limit myself to watching the DVD once. When I was ill, I just used to, I just obsessed over them. And because I obsessing over them, I was ignoring eating and drinking and talking to people and I just got into kind of like a vicious cycle, and once my chest infection had clear up, I really struggled to get back into the habit of going to like my day service every day. And I was like, I’m coming today I can’t be bothered and then when I did go, I was like staying for a couple of hours and then going home again, because I just, I was out of my routine and I was finding it really hard to get back into my routine. And just the pressure I was putting on myself, meant that I couldn’t concentrate on things like cooking or, you know, reading a book or anything like that. It was just beyond me.
I’ve got a close group of friends on the internet forum I go on. And, who I also talk to on MSM who kind like prompt me to do things in the evening, so at 6 o’clock someone will say, “Have you eaten yet?” And I’ll say, “No, I’m going to eat in a minute.” Or, “Yes, I’ve eaten.” They’ll say, you know, before I go to stuff and things like that, you know, “Have you shut all your windows? Have you locked all your doors?” So they kind of prompt me to do things. And they keep me occupied. They talk to me on like MSM and stuff like that.
And that’s been fine making friendships?
I wouldn’t say it’s fine. Locally I don’t really have any friends that I socialise with. Obviously there’s people that go to the same day service as me and when we go out and do social things. We all get together and we all talk and stuff. But they’re not people that I would see outside my day service probably because we’ve all got completely different needs and for us to try and meet up on our own would be very weird and very confusing and probably very hard for all of us. The majority of my friendships are always net based. They’re people… you know, I mean they’re people that I talk to on MSN or I talk to on the phone or things like that, but I don’t really have any local face to face friends apart from may one or two. Probably one.
Would you want more face to face friends or is the internet fine for you?
The internet’s fine, but it would be nice to have local friends to an extend because then when you’re bored on the weekends and stuff you know, you could go round to someone’s house and have a cup of tea or they’d come round to your house and have a cup of tea. That’s what friends do isn’t it? Social friends.
Over the course of six years my old social worker sent me to five different like day centres for people with disabilities. Again, none of them really worked out. In one I was the only verbal person which as you can imagine was very boring. Another one was too far away and I didn’t cope very well with the travelling and the transition. One said that they actually couldn’t meet my needs, which again was really shocking because I’m obviously at the higher end of the spectrum, but they thought that my needs were actually too severe for them to meet. And now I’ve ended up at an independent day service, not like council run, which I attend four days a week, and do social activities with them as well. And, you know, I’ve been going there for nearly a year now, and they can meet my needs since. The first place I’ve found that has actually met my needs.
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