DaisyFulkirk

Um, it really probably ISN'T this but I know that if you have got a urinary tract infection it makes you feel like you're bursting for the loo all the time but if you go there's only a tiny bit of wee in there... it might be quite a good idea to establish that this isn't the problem cos if it does turn out to be that then it will be made better quite easily!

I just noticed something that I wanted to remind you of, Bagpuss. One of the things that you said in your message is "Not a single toy is played with properly" and I think from the way you said it that this is a problem for you. I just wanted to remind you that playing with something 'properly' (the way the world thinks you ought to) is a very artificial construct and that there isn't really any properly. Playing is having fun with something, interacting with it and getting enjoyment, and if that means beheading teddy then well... so be it! I am glad that your daughter enjoys her toys and I know it is frustrating if things are not tidy like you want them to be but that's kind of a different problem than the one you wrote about. Maybe picking up her toys and bits and putting them away (big plastic boxes or something?) can become part of bedtime routine for your daughter, its probably much quicker to do it yourself but if she can learn to do it then tidying up after yourself is quite a useful life skill!

I learnt to recognise 'that feeling' as hunger when I was about seventeen years old. Before that I ate - plenty - because I liked eating, but I wasn't aware of any messages from my stomach telling me I needed to. Similarly, I also didn't get messages telling me my stomach was full until about 18 months ago with results now for a weight problem. I still 'miss' those messages (and some toilet-related ones) if I am not feeling well or distracted or busy or very cold. I don't usually ever feel thirsty and I have to be careful to have enough drinks of water in the day to avoid getting dehydrated. I think most people with autism do probably learn what all those feelings mean eventually but it does take quite a long time.

Like others have said... if your boy will stand (or kneel 'up') while being changed then go with that one, bit more dignified too especially if he is still needing to have help to get changed when he is grown up as that way you can face away from the person helping and have a little bit more privacy. I know a couple of people whose preferred way of getting changed is 'standing' on their knees - one can stand up on his own and one can't. Also some places do have a grownup-sized changing bench for people that do need to lie down to get changed, airports and big rail stations, most swimming pools... and the Trafford Centre in Manchester has got a really super-duper one with a posh hoist and a loo that washes and dries your bum for you and all sorts.

I might try and go to the manchester one, anyone else?

Woohoo, do I get 9 out of 5 for being both, then? I don't like Big Brother very much.

Is there a serious difference between obsessions and interests for someone who is autistic? It like seems for me that either I like something (or someone... which creates its own problems) really a lot and it/they is very very important to me or I'm really not interested at all. The new series of Doctor Who is a biggie for me and I like the fact that I can talk about it with my college friends - it is obvious for me and them that I like it in a different way to how they like it, but I can tell them things and they can tell me things about it.

I would ask what you're wasting good time reading the Mail for but that might sound rude so I will just say that you should be careful because they are not well-known for giving balanced, unbiased coverage to things like that...

I am a lot older than all your kids, I think, and I have good speech and academic/intellectual skills but I struggle with doing the whole 'clean thing' too. It's not being in the shower I mind, it's afterwards when I'm wet, everything else is dry, hair dripping down my back, all cold... it's that stuff. It's a lot of really horrible sensations and to be very honest I hate the wet hair thing (and having to dry it!) worse than I hate it when it's greasy and looks a bit yucky. My Personal Assistant washes, dries and plaits my hair for me every couple of days now, she has quite good powers of persuading me that I do have time to have a shower and things like putting the towel on a radiator to get nice and warm first helps too. I've got a routine of brushing teeth and putting shoes on in the morning now but it's only in maybe the last 6 months that I've been able to do both things spontaneously without needing someone to remind me. It wouldn't really matter if I did need someone to remind me, though, that's what that sort of someone is there for. Not applicable for the lads but I really, really, really really hate being on my period, too.

I ticked 'other' because I don't think it is JUST hereditary, if it was that straightforward they'd have identified the gene and the mutation by now. There must be some aspect of genetics, though, the family links are much too strong for there not to be. Maybe there should be a "I really don't know" box! I know that I did not change in response to any outside thing like an injection or something new in my diet - my mum is very clear about that. I always had very rigid, very 'different' ways of playing and I have always found new things and relating to my age group very very difficult. I can't see how MMR can do what some people think it has done and I think it's really important to establish what DOES happen when some little person undergoes a very dramatic change. I think that some research is needed - really independant proper scientific epidemiological research with controls and checks and balances and nobody at all standing to gain money or prove a hypothesis.

I had a horrible time doing my SATs too (in 1999 - it feels like a long time ago!) - I really, really hated English before GCSE level, all that 'creative writing' stuff caused a lot of stress and the teacher said she would be surprised if I got a C in English GCSE. Once I did get to the GCSE classes (at a different school then) I found that I liked it much more. I had a specialist tutor for English Language who helped me to understand some of it better and in the end I got an A in English Language and an A* in English Literature... so much for that C or D prediction. SATs are horrible narrow tests that only really test how good a school is at force-feeding the students a certain load of information and how good the students are at repeating the information a certain way in the test. It will be better for everyone when they get rid of them. PinkSapphireAngel could you talk to your son about not doing the tests and explain that if he misses them then they will give him a grade based on how hard he has worked all year which is much fairer anyway, and see if he would prefer to 'be ill' that day. Some schools are actually encouraging parents of non-disabled kids to do that anyway by way of a boycott of the tests...

Can I have some 'things I wish my parents had done differently'? I wish they'd pursued a diagnosis for me when I was very little, until of waiting till I was quite big and really struggling. When I got my diagnosis of autism it was the start of being allowed to be different, for me, and not trying to be the same as everyone else or it being my fault that I was finding it hard to make friends. I wish they'd started accepting (believing?) my diagnosis when I got it, instead of 18 months later. It was a very hard 18 months. Here are some things I am glad they did do like they did, for balance. I am glad that they kept me in mainstream schools - it was very hard, horrible at times, but I think I am better at dealing with the world now than I would be if I'd gone to special school. I am glad that they encouraged my friendship with other disabled children and my participation in the disability rights movement from the age of 9 - doing that has given and continues to give me unique support and really good friendships and a LOT of confidence and ability to articulate for my needs. I am glad that they waited until I was a bit older to start learning to drive, I was calmer and more grown up and I think would have been a bit of a disaster if I'd started when I was 16 (you can when you've got a physical disability, usually it's 17). I am very, very glad that they encouraged me to go away to do my degree and not stay at home - the first year of living away was complete hell but I think I'd never have learnt to live independantly and use PAs and everything else if they hadn't done that. I am 20 now and I'm not even sure that there was such a thing as recognition of 'high functioning' girls as autistic when I was very tiny, so maybe that isn't my parents fault, but as this is wishing...

Go and have a picnic in the park then! If the kids will cope with that. I turned up at school last monday (I work with a group of children as a volunteer)... 20 mile round trip... oops, teacher training day.

What about autistic people, friends, partners, advocates? No charge for us either?

Mrs P, I don't have anyone that could stay with me really - I live 200 miles away from my mum and dad (long story) and they're each going to be out of the country for both of the two most likely weeks for me to be in hospital - mum the first week and dad the second one! My personal assistant will come and see me and I hope some of my friends will, too - I have a couple of nice older friends who live very near the hospital - but I don't have lots of options for having someone there lots of the time. I think if they know that the person has autism and especially if they might be 'difficult' (my PA rang the ward for me and talked to them) they will do lots of things to try to help if they can - I am not very good at sleeping at night if it's noisy or I am stressed so they will try to put me in a single room, there is all sorts of other things too. We are going to go and visit the hospital in 2 weeks time and see the ward and talk to the nurses and work on a care plan and things - I think it will be OK if we get enough stuff ready before.

I rode a bike relatively well for four or five years, before my joint problems kicked in. I failed the 'cycling proficiency' test aged 10 - couldn't extend an arm to indicate a turn on a bike without falling over - but I was something of a horsewoman when I was younger and I managed OK with that. I'm not well coordinated - can't catch a ball and have seriously bad balance - and I don't walk much at all now. I started learning to drive in February last year, aged 19, and passed my driving test first time with 3 'minors' on the 28th of June. Because of my joint problems I drive an automatic car adapted with hand controls, which means that I have a lever in my right hand that I push to brake and pull towards me to accelerate, and a spinner ball clamped on the steering wheel so I can control all the steering with my left hand. I drive a lot, almost always alone in the car (other people can be a big distraction for me) and have done LOTS of motorway driving - this Easter, for instance, I covered nearly 1500 miles on the M1, M6 and M62 between Leeds, London and Manchester due to various family, music work and appointment commitments. I think my autism makes me a better driver than a lot of people. I can focus on my driving to the exclusion of everything else, I notice changes in the road and movements of other drivers and pedestrians very quickly, I will never ever ever break the laws of the road, and - like the other poster's child - I learnt my Highway Code very thoroughly very early in my life! Using hand controls might have an extra benefit for me as I think it is probably impossible to hit brake instead of accelerator with that setup. There's no limit to who's allowed to use hand controls and all driving school automatic cars have them fitted as standard - it costs a few hundred pounds to get them put into your car but that's not very much relative to how much a car costs. It took me a long time to get the hang of reverse parking, but with a patient driving teacher and lots and lots of concentration I'm quite good at it now. My car does windscreen wipers automatically when it rains and puts the headlights on automatically when it gets too dark, so that means I don't have to worry about judging when it is 'raining enough' or 'dark enough' to switch things on. That's a standard option on a lot of new cars now and it's really useful - my dad likes it too and he usually drives a big people-mover with no fancy bits at all. I do get stressed if I get into a 'situation' with other drivers but sticking to the rules of the road avoids that, mostly, and I have developed a kind of 'apologetic look' for if I think I have made a mistake. Everyone's different and I think the best way to judge if someone will be OK driving or not is to have some lessons somewhere quiet and safe with a friendly instructor and just see how it goes. Lisa - ring the DVLA and persuade someone to put you through to the Medical Clerk. They will sort it out really quickly and they were really nice to me - I had a lot of trouble with my forms too.

I rang PALS on Monday and they were really, really, really unhelpful. As soon as I said the A-word they didn't want to tell me anything useful. So today my Personal Assistant rang my consultant's secretary and got put through to the ward I am going to be on, and they talked to her instead. I have a sort of feeling that it might not be a very good idea for me to be on an 18 bed ward... so they are going to try and see if I can go in a side room instead. That's one of the big things I'm worried about - I am not very good at sleeping even in a quiet room in my own bed never mind in hospital! Thankyou for saying helpful things everyone, I think I might take a laptop and some games as that is my big way of 'escaping' from the world, that and music. There is one good thing, which is that one of my few really close friends lives very very near the hospital and him and his boyfriend will be able to come and see me - my mum and dad live a long way away and will be out of the country for some of the time I'm in hospital so friends will be quite important.

I have just been told that I am going to be admitted to hospital in five weeks from today to try and help with my back and mobility problems. I can't find anywhere any information about what it'll be like, if I will be able to have my own room (I can't sleep if there is someone else there and I will be staying for one or two weeks), how it will work with food... I think I can manage but only if I know, I can't get ready for something I don't know about. I tried to ask my consultant but he didn't give me a very specific answer, and I'm starting to feel really scared about it all. I live by myself and the hospital is about an hour and a half's drive away from where I live, 55 miles, I have two friends who live near the hospital but all my other friends live near me, or in London where I lived before. I know it is a specialist hospital for musculoskeletal problems, but I've only been there once before. Does anyone know where there is any information online about what it's like being in hospital for something like this, and what you need to bring and things? I've been looking but I mustn't be using the right Google search words or someting. Or has anyone done something like this themselves? Obviously everyone and all the hospitals are different but knowing what it was like for someone else has got to be better than not knowing anything about what it's like. Thanks in advance a rather scared Daisy.

I'm a bit allergic to shellfish and mango (!), but so is my aunty and she's not the slightest bit ASD-ish. I've never had particularly bad hayfever, am fine with cats n dogs (they make my mum wheeze dreadfully though), and can eat peanuts with impunity.

Don't believe anything Generation Rescue publish or endorse. Anything. There is no science, no fair study, no unbiased trial at all in any of their information. They endorse things like chelation which has already killed one child, and they make nonsense statements like "Autism is mercury poisoning" which is just not true, even if you believe there is a link (and I don't) then you'd have to be bonkers to mistake the symptoms of mercury poisoning with an autistic spectrum disorder. Please don't come and say things like they are fact here either, because they're not, they're just opinions and ones that can hurt children at that. Daisy (who is in no need whatsoever of rescuing, thankyou very much)

Ummmm.... that looked like a thoroughly dodgy article from the scientific point of view. Take this, for instance: "To test the link theory, Shaw and his four-scientist team from UBC and Louisiana State University injected mice with the anthrax vaccine developed for the first Gulf War. Because Gulf War Syndrome looks a lot like ALS, Shaw explained, the neuroscientists had a chance to isolate a possible cause." ALS? You what? ALS is Lou Gehrig's disease, a kind of motor neurone disease, it's what Professor Stephen Hawking has. I don't recall any Gulf War veterans complaining of progressive paralysis or being faced with a choice between suffocating to death or living on a ventilator for the rest of their days. The article says the research isn't published yet - why? Good medical journals (BMJ etc) are not reticent about publishing high quality, high interest pieces of good research. It is also worth pointing out that the mice sample used was ludicrously small (24 mices according to the article) - it would be a bit like me feeding one pet mouse bird seed and the other cat food for a month and then if one of them died declaring (in the press, not in the Mouse Health Annual journal) that cat food must be poisonous. On a closer-to-home note, does autism have any features at all in common with ALS, Alzheimers or Parkinson's? Is neuron death implicated in autistic spectrum disorders? I don't honestly know but I seriously doubt it.

But what is it they want us to sign the petition to save? Is it good? Do the children there like it? Could they be better served somewhere else? Is it unnecessarily segregating children when they could go to a unit attatched to their local school or similar? It is very easy to go "oh no, they must not close our centre/school/service" and much harder to look at why it is being threatened and whether there might be better options somewhere else.

I was thinking about this soy thing. I can remember my dad (he works in medical research) telling me about babies of vegetarian mums being born with waterworks defects a long time ago... maybe 8 or 9 years ago, when I was still very young. I wonder if this is related? I don't think I will have babies, but I might adopt one one day if I am allowed to.

I had guineapigs when I was little, I loved them. They're absolutely fantastic pets. BUT they are quite fragile. If the weather's very cold they will need to have their hutch moved indoors (the RSPCA says if it's below 0�C), they need a good diet with access to a lot of fresh veg and greens, they get horrid sore feet if you don't clean the poor little chaps hutch out often enough - and yes like others said they are social animals so you've to get two or more and not keep one on its own. On a side story my grandma told me a nice story about my dad's pet rabbit from when he was young. They were really worried about Thumper getting picked on by cats (they let him run in the garden) until one day my grandma looked out the window and saw a cat running across the garden... hotly pursued by the rabbit. Bunnies are pretty tough... piggies aren't and will need to be protected by a closed-in run from cats and things. Ours used to sit quite happily on a folded towel on your lap for hours and hours and have cuddles... I think they were really therapeutic, helped me to calm down when I was feeling bad. They make really nice noises, too, squeaking and chirrups and all sorts of little sounds. I wouldn't get some for a child who didn't understand very well about being gentle and careful with something very fragile yet. Do pictures if you get some! Daisy

Hi Debbie I live in a flat by myself, with Personal Assistants who come in to help me with some things I find hard (I also have a physical disability so that makes things more complicated). At the moment I live in a flat that I rent privately from a landlord but I might be going to move into a council flat instead because of some access and neighbours problems and also because of it being expensive. I really like living by myself, I speak to my Mum and Dad nearly every day on the phone (and grandmas too!) and I feel much more "grown up" and in control of what I am doing, living on my own. Saving up is a really good idea because you always need to get some new things when you move, sometimes there is most of the furniture already but you can choose whether to live somewhere where you rent the furniture too or if you want to bring your own and buy what you need. The few days before moving were really horrible because I got so scared, but once it was all done it's really good. Good luck and you can send me a PM if you want to ask things! Daisy