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the diagnosis didn’t get Alex sweets, drinks or toys so didn’t interest her.
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Actually quite late on, because when I was really young, I didn’t really have any interest in myself or other people. Very typical lining things up, would sit for hours and stare at the washing machine spinning round, that type of thing. So when I started school I didn’t really acknowledge that I was different, or that anybody different was different from anybody else. I would say it was probably around 13 or 14 when I went to… first started senior school which was a lot bigger, that I noticed that other people did, you know, different things to me, and I always had someone following me round and other people didn’t, and I think that was when it was. It wasn’t explained to me, because I’d always grown up with the word, so I knew it, but I didn’t actually know what it meant until I was probably around 12, 13, maybe 11 at the youngest.
And how did you find out what it meant?
I asked someone I think. Just turned round one day and asked someone and they explained it to me, but still even then it didn’t really make any difference to me. I didn’t really care. I didn’t want to know about it. Not because I didn’t want to accept it, just because I wasn’t interested. It wasn’t important to me, it didn’t get me something, it didn’t get me sweets or food or drink or toys. So it was of no interest to me, it didn’t stimulate me. So I think probably it was until I was around maybe the age of about 20, that I actually wanted to start learning what it was, and looking into it myself. That’s when I first, I suppose showed an interest in it.
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Alex is very trusting but is more accepting now when people lie.
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Are you upset when you find out that they’re lying or not?
It depends what it’s about really. If it was about something major or something that I thought was major then they’d probably never get forgiven and like disowned for the rest of their lives. If it was something minor and there was a good reason for them to lie, then I can kind of accept it. I think I’m a lot more accepting now, because like being on my forum on the internet like, you hear like stories of parents, you know, not lying but stretching the truth to their kids, say like, I don’t know, I can’t think of an example and I think that’s made me more tolerant, because I can see sometimes lying can be beneficial. A bit like white lies, not like lie lies. I just wish I had the ability to do it myself.
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A psychologist is helping Alex to overcome her fear of germs which has made her feel she could never work in an office.
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Oh definitely, definitely. I would go to work tomorrow if someone could give me a job that, well it’s not really the job meeting my needs, it’s more the kind of like getting to and from the job, and obviously most jobs you get things like lunch breaks and stuff like that. So it would be having help to structure my time. And obviously it’s planning for the unexpected. Like a fire alarm going off or things like that and I have an absolute ridiculous fear of getting ill and germs and stuff like that. So being in like an office with lots of being coughing and air condition is kind of like my idea of hell. It’s just a germ factory really isn’t it?
Is this a fear you have had for a long while?
Yes, I have a really great psychologist who’s trying to get me over my fear. She’s been trying to get me over my fear for four years. We’re getting there slowly. I do more now than I used to do and I wash my hands less and stuff like that, but yes, I’ve still got kind of little rules and stuff. A bit OCDish I guess. Very OCDish.
What sort of rules?
Things like, I don’t know, you’re not too bad now, you’ve, you’ve kind of like been accepted. But when my PA first started and stuff, if she had like a cup of tea or something then I’d have to leave that cup for like 24 hours so that any germs from her hands that had gone onto it could die before I then had to wash it up and disinfect it. And you know, Milton [disinfectant] is my best friend and things like that. But now I kind of like, just, you kind of like fit in now. You can drink out of my cups.
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Alex explains her “autistic” responses to some situations and why she tries to cover these up.
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Why do you control your rocking and flapping?
Why do I... talking about controlling autistic behaviours. Because society stares at you and thinks you’re weird if you do hum and flap and rock, and watch Thomas the Tank Engine on DVD when you’re 20 odd years. So, it’s just easier to kind of like put up, just to hide it, to be quite honest which makes things easier. People don’t ask questions. People don’t look at you. People don’t show an interest in you. You just blend in.
But you’d do that when you’re on your own would you?
Yes. I mean I can be autistic sometimes when I’m out it kind of like depends how stressed I am. And to what’s going on. Like if a fire alarm was to suddenly go off in a shop then the likelihood is that I would stick my hands over my ears and I would just leg it, so, obviously quite an autistic response. But as long as nothing went wrong then you kind of like control, and, but you can kind of like feel it bubbling up, and then like eventually it just has to come out. I sometimes to compare it to like Tourette’s because you know, where they say, oh Tourettes, you know, they can’t stop it. I think with autism you can stop it to a degree, well some people can. But eventually it’s got to come out, you just can’t hide it forever. So yes, I do autistic things sometimes.
So if you’re flapping, what … does it make feel you feel good or…?
I think, there’s different behaviours have different effects. It’s like the whole. I always say to people, have I ever said this to you. Hum. Go on hum.
Right now stick your fingers in your ears and do it.
You see its sounds totally different doesn’t it?
R2: Yes.
Yes, and it kind of blocks out everything that’s going on. So if you, if you’re in a situation where too many people are talking or you can’t concentrate or you need to escape it, but you can’t physically run away, then stick your fingers in your ears and hum, blocks out whatever’s going on. You know, I mean I look at like videos of me as a child, and like oh quite typical people with autism often do things up here either side of their face, but it blocks out everything else you can see. So it takes away all the, the sensory stuff that overloads you. And so things like that, kind of like make the world easier to cope with I think, if that makes sense.
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Alex’s care plan includes a weekly list of microwaveable meals but doesn’t always want to eat.
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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.
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Alex talks about the hazards she may encounter within her home or in her neighbourhood and her current care plan.
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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.
Weekends.
Yes.
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….
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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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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. |
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When Alex is unwell, she withdraws from everyday life significantly and watches DVDs for 10 hours a day.
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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. |
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Close relationships are Alex’s idea of “hell”. She can cope well with relationships on the internet.
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Ach no, my idea of hell, [laughs] I’d have to share my laugh with someone. No. I don’t, I couldn’t care for a child. So having children’s out of question. Social Services would whip me off them with two seconds flat. So kids are out of the question and I mean, when my friends lived with me, we were good friends, and we still are good friends, you know, we talk at least two or three times a week and stuff, but to actually have to do things with someone and feel obligated to do things with them, and I know it sounds absolutely awful, but to share an interest in what they’re doing and what’s going on in their life is good fun, but it’s a lot of pressure to have to do it every day.
At the moment, you know, I mean all my friends on the internet, we’ve got very like you know, 50/50 relationships. You know, they’ll ask me stuff about their kids or they’ll tell me what they’ve done. I’ll tell them what I’ve done. You know, it’s just a normal every day friendship. But if I can’t cope with it, I just turn my laptop off. If you’ve got someone living with you, you can’t turn your laptop off. You’ve got, you know, you’ve got to be nice, and you’ve got to engage with them. You know, if I’m having a bad week I can shut myself away and watch DVDs and don’t have to worry. But if somebody was living with me in a relationship I couldn’t do that. And I need to be able to do that. To de-stress otherwise I would just end up exploding.
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Alex has online friends who help her by checking that she has eaten or locked her doors.
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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.
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Alex describes what she has done since she left school.
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Can you explain what you’ve done since you left school?
Not much. No. I left school with GCSEs and A Levels. Which people say is more a reflection of my memory than actually my understanding of some subjects. Like I could reel off the periodic table to you, but I couldn’t put it into practice. I then kind of didn’t really do much, just sat around, watched TV, And it wasn’t till probably my early twenties - I left school when I was eighteen - so yes, early twenties when my social workers decided that I needed to have structure to my day. So they started sending me on college courses and things like that, which some were all right and some were completely hopeless because they were like life skill courses, designed for people with a learning disability. So they practising like really basic reading and writing which was well below me. But then there was other areas where they actually were more able than me, which was quite shocking. So none of the courses really lasted too long.
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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Alex now attends a day service that meets her needs after six years of trying different provision.
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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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Alex recommends some books but thinks that whether people will enjoy the books depends on where they are on the spectrum.
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What else is good reading? The Curious Incident of the Dog in the Night Time. I know it’s completely fiction and everything, but I think it gives, it’s not a great one. It’s not the best by any stretch of the imagination, but it kind of like gives you an insight into little things that people with autism might do, like the boy in it add red food colouring to his food, because he doesn’t like it being yellow and little things like that I think are really, really important for people to understand. So I always tell people to read that and not to take it too seriously. Anna Kennedy’s book Not Stupid, about the school she set up, because her two sons got like expelled from or not accepted into like 27 schools between them. So she built her own. That’s really good on like a parent’s perspective of education.
For adults on the spectrum, I think it really depends where you are on the spectrum to be perfectly honest. There’s various books about high functioning autism. Various books about Asperger's. Obviously people lower down the spectrum possibly wouldn’t be reading books about that type of thing.
But I think with it, as with anything it’s very much an individual choice. I mean I’ve read stuff that has really offended me, but I know people with autism who’ve read it who think it’s amazing.
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It has taken a long time for Alex to get an appropriate care package. She had a long period of being passed between learning disability and mental health services.
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The trouble is when you get older and your abilities change - which for some people they don’t but some people they do - and you get passed onto adult services, no one, no one knows where to place you if you’ve got an average IQ, whether you’re learning disability, whether you’re mental health. So you end up getting passed between the two and communication between the two is just poor. Information gets lost and then you end of kind of like lost and don’t know what to do. The learning disabilities teams are great, but they don’t have the facilities to cater for people with the higher IQ. The mental health team don’t have the understanding of autism because it’s not their thing, but they try, and there isn’t any group locally within like Social Services that a person with higher functioning autism would fall in.
Things like direct payments though are a godsend because they mean that you can choose your care. So you can employ a personal assistant. You can attend day centres or organised activities. It kind of like gives you the freedom to go around somebody who suits and can meet your needs.
So, you know, it would nice to have a team that’s kind of like across between mental health and learning disabilities, because at the moment all the mental health team do is supply the money for my direct payments. I really don’t have any contact with them at all. My social worker actually turned round and she said that she wouldn’t take me to hospital appointments because didn’t have a good enough understanding of autism. It’s like how can somebody be in charge of your care but not willing to take you out or understand your condition. It’s quite scary actually when you think about it; weird.
Before, like I’d have more contact with my social worker under the learning disability team. I mean I used to speak to her weekly. And she used to pop in and see me, and if I had something that I needed to do that I couldn’t do on my own, she would take me. Whereas now the mental health team are very much hands off and they’ll coordinate everything. And I think they’re actually doing a very good of coordinating it, but they’re very hands off. Whereas the learning disability team is very hands on, and I think I’m struggling to kind of like adjust to that.
So would you say you think that you’ve got a good care package?
Oh I’ve got an ample care package. I don’t need any more care. I don’t want any more care. I like to be independent. But I think it’s taken a while to get to this level. Is it the right level? In an ideal world then somebody would come in and help me cook every day, so I could eat a cooked proper meal every day. But I also think that I wouldn’t like that anyway even if it was offered. So… you know, I value my independence. I want to be as independent as possible. So having a company on call 24/7 rather than having somebody in my house 24/7 is much nicer for me.
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Alex thinks she “fakes understanding” sometimes and social care professionals don’t really understand her communication needs.
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Yes, it was like their risk assessment what they did of me. I got a copy of it the other day, it’s only taken them six months to do, and it’s got things on there like hostage taking, and arson and all these weird and wonderful things and its completely irrelevant to me. But it’s like they tick the box saying that I was a danger to children. And when I questioned my social worker about it, she said, “Well you said you don’t like children.” I said, “Oh I don’t like children - well it’s not that I don’t like children but I find them very unpredictable, but I’d never hurt a child or anything.” And she was like, “Oh most of the clients I work with if they didn’t like children they’d hit them.” And it was just like well you can’t apply that to me, just automatically because that’s what you work with. It’s awful, and you know, they don’t understand communication needs either. It’s like its much of my communication is really, really good I think. I do kind of like fake a lot of understanding at times. And things will throw me, like my social worker once sent me an email saying, “I hope we can foster a positive relationship.” I was in tears for an hour because I thought I had to go and live with her and she was fostering me. It was awful.
And, the social worker before that, again from the mental health team, was at a hospital appointment with me. I was really distressed because they tried to take blood and they couldn’t get it out. And she kind of like just stood by the main door and said, “Wait there I’ll be two minutes.” Well I counted on my watch two minutes and she wasn’t two minutes and after six minutes I walked off and I ended up getting lost in town and it was a complete nightmare. But she couldn’t see that by saying two minutes I would actually hold her to two minutes. But if she wasn’t going to be two minutes, why did she say it? She couldn’t understand why I was thinking like that. Whereas, you know, under the Learning Disability Team, as much as they couldn’t provide services that catered for my intelligence, they did understand that they had to be quite good with their wording and not abstract in their wording and things like that.
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Alex describes her experiences of direct payments and commissioned services.
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Can you explain how that’s worked for you and give a bit more information?
Yes, I was first given direct payments about three years ago and it went completely wrong. It wasn’t really explained to me properly. I didn’t know what I could do with it, and what I couldn’t do with it. And in the end I went back to having commissioned services because it was just easier for me to manage. And then once I’d kind of like exhausted all the, you know, council run services. I had to go back to direct payments. I actually went on the internet and just Googled like autism and learning disability in the area where I lived. And I came up with about three or four independent day services. And I wrote to three of them, and it was purely out of luck that one didn’t reply, one said they had a waiting list and one replied and said, “Would you like to come in for a day?”
And I went in for a day and I, it wasn’t perfect but it was better than anything I’d before. So I could start going a couple of mornings a week, because I hadn’t done anything and a lot of things had failed. I’d lost a lot of kind of like my confidence in different services. So it took me a while to kind of like build up trust with them and everything. And gradually I just increased how much I was doing. Until I now do four full days a week with them. And I also have a direct payments budget to employ a personal assistant, who can like take me to medical appointments, take me shopping. Those type of things.
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Alex’s social worker admits she has no understanding of autism which is “scary”.
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There’s been some kind of like accidents, like, you know, I’ve tripped over and fallen and broken my arm and stuff. And I’ve haven’t known who to call for help because the mental health team does have an out of hours number called the Crisis Team, and well I’ve got a nut allergy and ended up in hospital after accidentally eating nuts. And one of my friends on the internet knew I went to hospital and called the Out of Hours Crisis Team. They said to her, they asked her if my mental health was intact, and she said, “Well yes, she’s just eaten nuts and she’s in hospital, like quite unwell.” And they said they can’t do anything if my mental health is intact. So they wouldn’t come out and support me. And I was stuck in a hospital, and you know, I told them, told the hospital that I was leaving. They gave me tablets. Didn’t have a clue what I was meant to do with these tablets. Got home and my PA ended coming round and spending over an hour trying to find out what these tablets were and when I was meant to be taking them, because they just gave me a strip of tablets, they didn’t them in a box or any instructions.
You know, and it’s taken a very long time for the mental health team to actually grasp any concept of autism whatsoever. And now they’re just passing the buck. They’ve just said, “If you’ve got a problem phone the care company. If the care company think it’s something that Social Services should be dealing with, they’ll contact us.” So although I have a social worker, she’s not actually willing to do anything any more, because … I mean she openly admits that she has no understanding or training in autism which is quite scary.
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