DaisyFulkirk

Just to add that I have had some dealings with people quite high-up in DANDA and they're fantastic people BUT I dislike strongly, for reasons I can't easily explain, the term "neurodiverse". It is perhaps because such terms make the acknowledgement that I have a (potentially severely) disabling impairment less likely, and maybe also because it's a fairly direct rejection of the term 'disabled' itself and I'm fairly big on Disability Pride, and also calling a spade a spade and having done with it. I'm disabled. I'm a Disabled Person. The campaign for Disability Rights is the campaign for rights that my friends and I are frequently denied - I don't feel any need to be a member of any more clubs than one specific one (autistic people) and one general one (disabled people). Dunno really. It just makes me uneasy. Weird. Janet (their leadery person) I like very much, though.

I wasn't ever able to sit comfortably on the floor - either long-sitting where your legs are straight, or with crossed legs, right from when I started primary school - I can't remember from before then. It wasn't too bad when I was younger, just little things until I was 12 when in a fairly short bit of time my right knee got very sore, very quickly - something like 6 weeks inbetween being able to run and it being too painful to stand or walk much. The GP said I had Chondromalacia Patellae and I was put on anti-inflammatory drugs, which did nothing at all to help. Then I had physiotherapy (repeating exercises like doing 5 leg bends) for ages, which was really horrible and caused a lot of pain, and I was on crutches. It slowly got a bit better, I had lots of Alexander Technique lessons which helped me to be more comfortable standing up, and lots of osteopath visits which didn't really help but were quite nice and relaxing anyway. Then I saw a paediatrician and a paediatric rheumatologist together who said that I had quite severe Lumbar Lordosis which means my back is curvier than it is meant to be, and that I was overweight (like I needed them to point that out) and that I was a Chronic Pain patient. That must have been when I was 14 or something like that, nobody mentioned Ehlers Danlos or the fact that I am very hypermobile. I went to see an orthopaedic surgeon a lot then too but I think she thought I was a 'malingerer' and she wasn't very helpful. By the time I was 15 I was walking better again but lopsided with a limp because my knee hurt less if I held it mostly straight, and then three years ago it got worse again and sore in more joints when I left home and had to walk everywhere and not get lifts or anything and I started using a stick all the time instead of just sometimes, and now I use a manual wheelchair mostly - my back and shoulders are not as sore as my hips and knees and I am very good in my chair - I can go fast and keep up with everyone else. It was about two months ago that I first heard of Ehlers Danlos and my GP here referred me to a rheumatologist who I saw privately and he is referring me to a specialist in Leeds who knows more about Ehlers Danlos than he, the rheumatologist does. I have been doing lots of reading and looking-up on Ehlers Danlos and I 'fit' the description very closely - my ankles go sideways if I stand up without boots on and my hips do weird things sometimes. A bit like my autism really, I wish they had realised earlier, it would have saved so much trouble! I have also had the psychological 'implications' thing, it's horrible, I wish doctors would keep their big mouths shut if they have suspicions like that while they're still in the finding-out stage, its so cruel and makes you feel so rubbish if you are trying to get a doctor to talk to you about your sore hips and they are only interested in your 'feelings' and if you get on with your mum and dad. And yeah... I always want to say well you would be depressed too if you had been hurting for 9 years without stopping and half the people you talked to assumed you were making it up.

I have a very good friend who is quite a young mum with two children and no partner who had quite a hard childhood herself and has some mental health issues and her children are 7 and 9 I think now and they're not autistic but just lively children and because my friend lives in the countryside she can't get ANY parenting help at all, the bus drops the children off home after school and thats it, they can't go to after-school club, she can't get to parenting classes (no car), there's no holiday schemes they can go to. She will only get help if she says she can't cope and asks social services to take her children into care, and of course she won't do that unless she's in absolute desperate state and then they really would take the children into care, even though they could stop her from even getting in that state by letting her have the help and a taxi so she can go to classes and after-school groups for the children and so on. It's so terribly unfair and I am sure that kind of thing happens to parents of autistic kids too, only even worse - even less after-school clubs and holiday schemes to go to, even less (like for instance 'none') nights when they sleep at a friend's house... like other people have said we are spending so so much on crisis care, if we spent as much on every-day helping parents to cope and children to be happy then we wouldn't need half that crisis provision.

But if we were really trying to say it 'right' like how Dr Asperger would have said it shouldn't it be something more like as-pair-ger (with hard G) than as-purr-ger? My German lessons were quite a long time ago.

Kathryn That's what I have!!! I am only just in the process of getting a formal diagnosis (where have I heard this one before) but it's virtually certain that I've got it. I saw something somewhere that said they thought there was a (genetic, I suppose) link between ASD and EDS. My knees are very unstable when I stand up so walking is sore and very hard work. The doctor told me that the fancy name for double jointed is 'hypermobile' because the joints aren't really 'double', at all, it's just the ligaments are too stretchy so they don't stop it from going backwards or bending more than it's meant to.

What is 'lightly frying' though? Frying is cooking something in a shallow pan in oil or butter until it is cooked, as I understand it... is 'lightly frying' doing it only a bit so it's not properly cooked? Daisy who cannot distinguish 'crunchy' from 'raw and therefore not for eating'

Melty cheese and mushrooms and a little bit of spinach on savoury ones. Golden syrup or lemon and sugar or raspberry jam or chocolate spread on sweet ones. Thats my favourite things, anyway. Yumyumyum I am going to get fat again now.

Pardon me if I have understood something wrong, but we are talking about red ears, aren't we? Not tummy upsets or meltdowns or being hyper. I was trying to make the point that red ears is not exactly a life-destroying symptom. Because it's not, is it? Sorry again if I have now upset you! Daisy

I will second that Tux. I have a (quite mild) physical disability as well which I think avoided some of the worst of the "you don't qualify for our service" chorus from the social services (more like social dis-services) so even though ALL the help I need is for autism-related reasons not bad-legs related reasons, I am on the Physical Disability team. I think having a good Care Manager (they are social workers only in charge specifically of care-type things) is pretty much the answer to everything... if you have one of them on your side and he or she knows their stuff, you WILL get what you need in the end. Loraine, I know what has worked well for some individuals in the past is to have non-disabled or less-disabled housemates who can while not taking 'official' responsibility for anything be a bit of a watchful eye for if there are problems, this is also the bit where having an advocate (who is ideally a disabled person but older and with a bit more experience of the world and all its 'pit-falls') can be really really useful. My advocate is in her 60s and she doesn't have autism, she has a physical impairment but she knows all about doing forms and asking for help and how to get what you need and independant living and Personal Assistants. I interviewed my Personal Assistants with another disabled friend who is about ten years older than me and used to doing Direct Payments and everything, they work for both of us although at seperate times and so on, so that gives me some help and 'back-up' with dealing with it all. If the person and their parents are all happy with them staying at home then why not, its different for everyone. One of my friends with Profound and Multiple Learning Disabilities, her mum doesn't think she wants to live at home anymore, she has been at special college and now she's grown up. The most important thing is that you're happy and that you have as much choice and control of your life as you possibly can, wherever you live. Kathryn, my friend wrote adverts for both of us "two disabled women are looking for Personal Assistants in..." etc and we gave them to the Job Centre and she put some up in shops and things. I showed it to my Care Manager and she said it was OK and we could interview the people at their office or at the Job Centre if you ask, so you don't have to tell your address except to the ones you give a job to! It was all quite easy, just a bit of organising involved. My advocate said I could probably help someone else do it, now!

Yum yum well done, I like making lasagna (I don't eat meat) cause you can make all the different bits whenever and then put them together... so the timing doesn't go wrong as easy as some things. I don't have a written down recipe cause my mum taught me how but I will try and make a written down one for you if you want. Daisy (not a very good cook)

Um, is your ears going red such a terrible symptom? Oh dear, I had better not talk to boys I like any more cause my ears go red then too. And if I'm laughing a lot. Or running around when it's very cold, especially playing snowballs with my cousins. Daisy Having her pancakes and eating them too.

Hi Nemesis. I was identified as having problems with 'motivation' and independant working when I was four, just at school, and gradually had things about high IQ, fast reading, socially isolated added through primary school. A friend's parent nearly-correctly thought I was dyspraxic at 11, I was diagnosed with depression two years later and realised on my own at 15 that I was autistic. I got my formal diagnosis when I was 18 and a half, once I'd left home and started my degree, although my mum knew before that - she studied psychology and has worked as a music therapist with autistic children, before I came along. I wish I'd been diagnosed earlier - I did get some good help but really messed up my A levels for instance and I think that could have been avoided. Hi Emma, I think my mum and dad are glad that I have left home, maybe worried as well but mostly glad, especially now that I'm all sorted out and OK. I know my mum would like me to do more things on my own and not have so much help, but we have "agreed to disagree" on that one and don't really talk about it. One of my younger sisters (18 now, youngest one is 15) has left home and gone away to university too, and that makes me sad because it makes the difference so much more obvious, she's running around making millions of friends and doing lots of new things. Before there was no-one for me to be compared with. That's what I thought too, but I wasn't sure. Thankyou for checking for me James!

You totally can say that it's too loud - you could say if you didn't want to explain anything else that the flashing lights or loud music gives you a migraine because that is a 'mainstream' thing that your friends will accept. And yes... same with me and relationships. I have had two boyfriends in my life, one I broke up with because he went off to join the army and didn't want to still have a girlfriend, the other one more recently because I started realising that he didn't understand what I wanted or needed in a relationship and wasn't interested in finding out.

I am a volunteer 'mentor' with the organisation Reachout in a mainstream primary school in Manchester (if you click on 'mentoring' you can actually see Daisy and the children I am currently working with) - I help with maths and reading and science, the group I am with are from a MLD special school that was closed recently. I spend one afternoon session a week there, and I like it a lot - although I don't know if I'm very useful!

I would not be described as having a learning disability according to the traditional IQ based definition of them, but I am Autistic and a Direct Payments user. Having direct payments not only means I can live where I want (not in some ghetto of 'special' flats) and be supported by who I want (women near my age that can't be mistaken for my mum when we are out and about) and get up when suits me, and generally be in control of all the decisions about my lifestyle. ANY other system does not, cannot allow this because by its very nature you're either in an institution with all the things that brings (fixed bedtimes, restricted choice of meals, less privacy, almost-random selection of caregiver) or at home but tied to a schedule of having someone sent by social services come and give you your tea at 4:30 every afternoon even if you'd actually rather eat nearer to 8pm. I did do the social services care team for a bit and while they were nice people, they were often late (their schedules meant they had to cross the city in 10 minutes sometimes), I never ever could be sure who was going to turn up, and I was always having to re-teach people how to do things 'my way', which meant that I ended up dangerously dehydrated twice (because I do not remember to drink) and went without a meal a few times because they didn't listen to what I said I eat and don't eat. You're not responsible for tax and insurance and things unless you want to be, they have payroll services where they do that for you if you ask them to. The insurance is actually really simple, my care manager gave me a form to sign and that was it really. When I was having home care from the council, if I had a late day on my course I had to cancel my 'call' and not get any help with my dinner or washing my hair that night. They don't help with social things either, if anything they make it worse because they won't go with you to go to a cafe or meet a friend at a bar, they will only help in your house. Personal Assistants you get through direct payments can (and do) do those things. If I wanted I could get together with another autistic friend and share a house and employ PAs together, some of my friends do this, if you want to live with someone else and not by yourself it's a good way of doing it. If I needed or wanted to I could still go to a day centre or social groups or whatever, at the moment I don't go to any 'special' things like that, there aren't appropriate ones for people like me round here, so I just go to some political things which have a kind of social side-effect thats quite nice.

As far as I can tell, children who talked at the age that children usually talk get diagnoses of Asperger's syndrome, and ones that talked later get diagnosed with autism. Certainly by the time you're all grown up there can be no difference at all between someone diagnosed with AS and someone diagnosed with autism, or even difference in the 'wrong' direction like my friend Colin has a diagnosis of AS and I have a diagnosis of HFA but I think he's more severely impaired in a lot of ways than I am. Its all much of a muchness... all cats are felines but some felines are not cats but lions. Everyone with aspergers is autistic but not everyone that's autistic has Aspergers. At least, that's how I think it works. Anyone else?

I am in Manchester

Shopping Malls have always been my idea of hell... its really hard to explain why but it's SUCH an uncomfortable place... it echoes and there are smells, if you're really unlucky people smoking, too many shops so even my really good sense of direction gets lost, and (like your son by the sound of it) I find it really hard to wait and stay nice and patient when my mum (or whoever) is clearly enjoying being there, it's like she doesn't really understand how much I hate it and how pointless it feels to do anything except buy the thing you came for and go home. I think it's Just One Of Those Things... I kind of like going now if I go just with my personal assistant (who goes where I want, it's not her shopping trip) and we sort of plan what we're going to do. I'm sorry your son wasn't nice to you and I'm not trying to say it is OK for him to be horrid... it just made me think about what it's like for me. Maybe next time it will be easier for him if you plan what you are going to do, write it down like a timetable even so he can see... half an hour to have lunch and then mum and B go to CD shop - that kind of thing.

I think if you can handle it at all that living at university is a really good thing to do, actually leaving home the first time was INCREDIBLY traumatic and I was very very homesick for my first term, but I honestly think if I hadn't gone away then I would never have had a chance to leave home and be independant. I would want to make it smoother for someone else who was going to do it, it wasn't so much 'transition' for me as just something quite abrupt which I found quite distressing (still have a scar on my knuckle to prove it) and because a lot of my support needs weren't really known when I started for example that I could - can - help to make quite a good meal but need to be supervised and that if someone doesn't remind me my hair doesn't get washed, so I had quite a hard first half year with a lot of time spent in a big mess but I am quite unusual because I was late diagnosed and am very good at talking which masks a lot of other things, especially for people who are only seeing me for a short time like the doctor. Once I started getting things sorted out with the help of some good friends who know about how to get support and some suggestions from the NAS it has been quite smooth, and now I am living on my own I'm a lot happier because I didn't like sharing a kitchen and corridor with other people, they were always too noisy. I use the student's union at lunchtime rather than in the evenings because it is quiet then, there are just a few people there and you can have some food and read the newspaper. Going to see it a lot of times before I went there really helped, I went and stayed the night in the hall of residence and tried out the canteen food and said hello to some of the staff that I have a lot of dealing with (welfare officer, administration ladies, support tutor).

Some of the girls at my high school had 'lunch buddies' where you would have someone older who agreed that they would be in the queue with you and eat lunch together, obviously if your son has packed lunches he won't have the surviving-the-queue problem but it might help if there was someone who would sit with him and make sure he remembers to have his lunch - it seems like a lot of primary schools now have buddy systems of various sorts so they might be quite receptive to that idea.

Oh no, if we're not allowed soya now I've had it, I'm vegetarian and its about all the protein I get sometimes as I'm a bit squeamish about eggs. Can't do beany chickpea-y lentilly things, they make me gag so if soya's out too I'm in trouble!

Thankyou baddad, I think that's what I am trying to say! I am not a hero I am a relatively confident (at least on the internet) and articulate product of a Daisy-friendly segment of society. Some people who don't know me well and see me only in 'real life' where I do not have the benefit of a keyboard to write on (I am very much more eloquent typing than speaking) and especially only in stressful situations like workgroups at uni... have a very negative view of me, because they only see a Daisy who either interrupts a lot or says absolutely nothing, and chews on her fingers and clicks pens and really hates having someone sitting too close. I have done awful things as well as the good things in my life, I had a big problem with compulsive lying for a while when I was a bit younger and really upset a lot of people when they found out, I still have a lot of problems making friends, and I'm not going to get nearly as good a degree as someone with a brain like mine ought to get because I'm lazy and really bad at being organised and getting work done. I'm struggling to control my weight and I'd like nothing better than to have a boyfriend, even a husband and a family one day but it seems like I'd have a better chance of winning the lottery. So... not so perfect, really, just as flawed as anyone, its just there aren't so many good places to say that kind of thing on here.

My posts from the video thread, because Hailey asked so nicely. Post 1: If I wasn't autistic I wouldn't be me. If you took my autism away you wouldn't get a not-autistic person, you'd get a non-person. It is in every aspect of my life, the good things and the bad things, and all of my friendships, a lot of which are with people 'different' from who you would think a 20 year old woman would be friends with and I think my life is all the better for having friends who are in their 30s and 40s and 50s and 60s. People call me clever and talented and caring and affectionate and, yes, autistic and obsessive and sometimes quite anti-social and all of those things are part of who I am. I am doing a degree at a really good university and I passed my driving test first time and I got four A stars in my GCSEs and my grade 8 in music when I was 15. I don't know if I would have done any of those things if I wasn't autistic, they're better than what either of my not-autistic younger sisters have done so far even though they're more independant and more confident in new places and have much more 'normal' friends and boyfriends and things like that. Are they 'better' than me just because they're not autistic and I am? Thats what frightens me about all this 'treatment' stuff, which I think is not currently a real possibility anyway, I don't think you can honestly make someone un-autistic. and Post 2: Thanks Jonathan, Jill, asereht, I was only saying what I think and how I understand myself. Jill your signature really made me laugh... friction burns! I go on holiday every year with two much more disabled friends and their mums, one of them 'Emma' (not her real name either cos I don't have her permission to talk about her) has really really severe autism and learning disabilities and she is always reminding me that even though we are as different as two autistic girls can be we are also the same because what we both need most of all is just for people to accept that we are perfectly good human beings in our own right and do not need to change to suit how someone else thinks we should be.

I get red ears sometimes too, not so much now as I used to, but we made pancakes today (my friend told me it was pancake day and I didn't check so we had pancake day a week early!) and the thought of not being allowed pancakes any more... or pizza... well lets just say that me and a special diet probably wouldn't get on very well.

Wow I have had lots of messages and posts from what I said up there! Hailey, I think there are lots of reasons why I am quite assertive and quite positive about my autism but I did just want to say that I know it sounds like my life is all great but it's not exactly perfect, I get really lonely sometimes and I like my Personal Assistants very much but its very frustrating because they don't always know exactly what I need or want and sometimes it's hard to tell or show them. Here is a true story for you. When Daisy was a little girl at primary school and not diagnosed as anything except 'precocious' and 'strange' and 'grown up for her age' and not very happy with it, a little girl with quite severe cerebral palsy came to the school and Daisy was fascinated by this girl - a year older - and watched her, stared at her a lot and with her talking machine this girl started to make friends with Daisy. Then this girl, the one with cerebral palsy, I will call her 'Rachel' but it's not her name same as Daisy isn't mine, her mum invited Daisy to go to a group for disabled children at mainstream school with Rachel. It was a group run by some disabled grownups and their children, some of whom were also disabled, and there were children from all over the city there who were amongst the first big group to be in mainstream schools. Daisy was 9 when she started going to this group, and it was there that she first started learning about Rights and Politics and about being assertive and confident about yourself. The group finished when all the children in it turned sixteen because they were all so busy with other things, and now all those children are 20 and 21 and 22 and spread all over the country at university or college or just left home, but they've all got some things in common, even though they've got very different disabilities: they're all articulate, even the ones that can't talk, they're all confident and assertive and they all know a lot about the 'language of rights'. In a way I think I have been brought up by the whole disabled community, not just my parents (who are not disabled but quite 'aware'), and I think that's the best thing that could have happened to me. There's nothing to make you feel good about yourself like being told that you are 'brilliant' by the people that did all the really major protesting in the 70s that resulted in ALL the rights we have now. My dad says its like Paul McCartney telling some kid that they wrote a really good song.