NobbyNobbs

i got a call from my local (ha!) diagnostic centre for Asperger Syndrome testing today, saying they'd got my referral from the GP, but in order to have the testing under the NHS i had to apply to my care trust and they would decide if i was worth spending the money. has anyone else had experience of this and whether it gets passed through straight away or are likely to say no? the cost of the test privately is near �800 which my parents say they'll pay if i can't get NHS funding (but i'll never let them). but i've also heard that government things dont accept private diagnosis for official things like DLA. anyone got any knowledge on this as its my next step. i think i'm looking at a complicated diagnosis, as i have also now been diagnosed with dyslexia and hypermobility, and its looking like i have lots of the named specific aspects of aspergers like SPLD. i'm completely lost on this now, and running out of steam to look into things thanks

i had this problem. for me it was triggered by a school trip where i wasn't allowed to go to the toilet, and had to sit on a coach for 2 hours absolutely desperate and terrified i'd wet myself in front of the rest of the class (i was 14!) after that i felt like i was absolutely bursting as soon as i thought i couldn't go to the toilet. so i started going every 10 minutes incase i couldn't go later. it got to the point where the fear of not being able to go to the toilet stopped me being able to leave the house. i also stopped going to school because i was too embarassed to ask teachers for the key to the toilets (at my school you had to ask to leave class, then go to the main office and ask for a key to get into a toilet during class) and this blew into full blown agorophobia. if i was made to go out i'd have to go in every toile i saw, and got in such a state if i couldn't that i'd be crying. i eventually got control (mostly) over this by letting myself go into the toilet, but not peeing sometimes. then i could reason that if i could go X time last time, i should be able to this time. the result of this was that fora long time i judged when i needed the toilet not by any urge or feeling, but by the clock. not a perfect situation, but it got me calm enough. it took me about 5 years to be able to go out the front door without going to the toilet first.i had to go to the toilet before every class or i couldn't bear to walk through the door when i did finally (After a year) get back into school. what i find strangest is before the school trip, i had never been in a school toilet, as i refused to go in them as i was scared of the girls in them. i'd say tell the teachers to let him go. if it is anxiety led, then he needs to start dealing with it in lower stress places first, and tackle school later

my (biological) parents are their foster carers. the worse of the two is just a massive control freak and will try to dominate everything, no matter how careful and supportive you are. that said, one day she'll be fine and seem like a normal happy girl, another she just switches and back come all the AD behaviours. we've tried giving them personalised shopping lists of things to collect on the way round. they argue over if the other looked(!) at the thing the other was meant to pick up. we've tried giving rewards for doing behaving in certain ways in sections of the store. nothing seems to work or everything works depending on what mood they're in. i've given up trying to find a reason. they're fantastic kids so its just a case of seeing round the really annoying parts and the strops and screaming fits and concentrating on when they do respond. probably not the correct way to deal with it but it seems the only way to stay sane! we have however found that the worst responds amazingly well to completely shaking up all the rules constantly. all the rules of foster care say routine and stability, so this is tricky but by changing the way we do everything every day for no reason other than 'because i decided to' means she can't think fast enough to find an argument. (even the frustration tantrums stop!) in my experience abused and neglected children behave a lot like kids with ASDs so she should really hate the changing routines, but so far there haven't been any visible adverse effects

we have two Reactive Attachment Disorder girls, and we struggle to treat them as the guides say because it seems so cold, but then again, we get sick of having discussions that go round and round because they can't accept they are wrongor out of control. this morning one spent 40 minutes talking round in circles about how i was mean because i wasnt walking round a supermarket but she was, when i was right next to her pushing the trolley! they are incredibly maniplative and cunning so the upper hand has to always stay with the adults or there's no getting it back

M is already referred to CAMHS, fortunately she gets to jump the line due to her situation! i think her behaviours stand out more because she is an incredibly intelligent child. however her comprehensive language skills are pretty much non-existant. she'll read the words of any adult book you put in front of her, but can't understand basic childrens stories or instructions (admittedly sometimes i think that she just doesn't WANT to understand when we tell her to tidy up). she will parrot off entire pages of books that she read 4 months ago, giving you page number and chapter references, but hasn't got a clue what it is that its saying. obviously she's a very damaged little girl, but getting her the help she needs means knowing if there is anything more than her poor start in life behind the behaviour and i'm worried the obvious reason of her past will be used as a way to avoid looking any deeper. thanks for all the advice, i think i'll really push for someone to at least consider it. then if they think its just normal for a kid with her experiences then at least i know i've tried my best to help her, whatever way it is.

i was wondering if some of the parents who know more about ASDs in children could tell me if i need to push for testing or not. M is 8 years old, and is a very difficult child. she is in care and has had a very traumatic childhood which is why i'm not entirely sure whether her behaviours are linked to a possible ASD or just her life experiences. the main issues are - - she has a fixed unusual talking pattern. if you speak to her on the phone she always say 'hello' in exactly the same way; too loud, in a rush and with a big breath on the helbit. she is immensely pedantic when telling stories of events. to tell a story about her journey to school she will list every junction, every person and every car she has seen and doesn't discriminate between important things like 'we saw an escaped cow' and 'we saw a red car, a blue car, a red car...' - she is entirely obsessed by food and gets very anxious and worked up about for no obvious reason. this one is complicated because she was malnourished when younger, so naturally has a strange relationship with food from that but it seems to me to go further than that. she will not eat red foods at all, wont eat anything with a sauce on it, but will eat meat with the sauce scraped off (so its not the flavour she doesn't like). she has days where she just refuses food for no reason that we can see. it will be something she ate earlier in the week, but she absolutely will not eat it. she also doesn't remember foods. she'll ask 'have i had that before? did i like it?' and even if the answer to both is yes, if she doesn't like the look of it that day she wont eat it. she will also eat certain foods cut a particular way, but not any other; carrots must be raw and cut into sticks or left whole no chunks allowed! - she has no understanding of other peoples feelings (again this is a potential cross over from previous experiences). she doesn't understand why she should say sorry as it is just a word. she has no understanding of how her actions affect other people. she doesn't make friends with children, only adults. she doesn't seem to have any social embarassment - she'll throw a tantrum right outside school where all her classmates can see her. - she has no imaginative play (yet another crossover from poor early years stimulation), she will cut up sheets of paper, and glue them to another sheet of paper and write the same word over and over to fill a page. - she has massive meltdowns for unknown reasons. she will just break down into a screaming sulk for the tiniest things, usually involving doing things (she thinks other people should do them and not her). she shreds her clothes from stress in situations where peoples attention is on her. she makes the same repetitive noise and seems to be unable to control it which gets her in a lot of trouble! - she doesn't seem to understand the need to wipe after going to the toilet (but had regressed during the neglect to not using the toilet anyway). even if she sees the result of not wiping, she refuses to admit it was her who did it. i dont think that can be just embarassment because for over a year she would wet herself repeatedly through the day and would eventually admit she had. there are lots more things like this, but i can't go into detail because confidentiality is obviously an issue for this one. am i looking for things where they aren't there or are these ASD behaviours? i wasn't diagnosed until adult and my parents thought i was just an 'annoying, strange child' so they can't remember if i did these things, although my mother is constantly telling me 'M is just like looking after you as a child'

well in that case you're all set... it clearly states that you can sign it off yourself, you just need to get the school etc. to cooperate in changing the details on his files, but i'm assuming he hasn't been to a parents evening lately so that shouldn't be a problem!

does anyone know about the possible medications to help me sleep. i get very anxious before i go to bed and it can take 10 hours for me to settle down in bed, i just keep sitting up all the time because i dont want to sleep, no matter how tired i am. when i do fall asleep i wake up all the time at the slightest noise, or because i feel like my brain is twisting(!) or my legs are moving, or i feel like i'm dropping, crashing into something or falling out of bed. i also talk and walk in my sleep. i've been to the doctors about this many times pre-diagnoiss for AS, but they just say i need to learn to relax! i can't take over the counter sleeping tablets as they make me hyper, as i fight the urge to sleep so much. i'm wary of asking my GP about this again as at the moment i dont have one who doesn't think i'm making everything up. if i can find out a bit about my options i might stand a better chance of getting some treatment - i had to see 5 doctors to locate one who even knew what AS was.

if his fathers family do not cooperate, you have the right to change the name without the fathers consent. its slightly complicated if you recieve maintainance payments, but if not then you just send in a letter stating his absence with examples (birthdays etc.). this site has all the information on it - http://www.ukdps.co.uk/CanIChangeMyChildre...s.html#Section5

he's usually a good doctor, which is why it surprised me so much. fortunately my mother was with me, and she thinks he was embarassed cos he didn't know much about it and i did, so fired back by dismissing it as nothing. he also didn't talk to me, only adressed my mother. granted she did a lot of the explaining as i tend to start in the middle of sentences and not make much sense, but even so, i was sitting right there! i'm going to wait and see if he actually does anything about the referral i've asked for as i've given him the full address of the place. if he doesn't do anything about that then i'll complain but i do feel bad both ways because if i complain it seems mean on the doctor, and if i dont then i can see it'll just happen to someone else, and its not fair when we all have to fight so much to get these things recognised as it is.

not sure there's much of a point to this post beyond looking for a bit of support. having managed to go home from uni for a week I decided to get ahead and see my home GP to ask for a referral for an in-depth assessment for Asperger Syndrome, as i only have a working diagnosis. i managed to get an appointment for later in the day (a near-miracle at my surgery). i went in and explained that i had a working diagnosis, but needed a more formal one to completely confirm the findings of the psychiatrist. my GP was not impressed. he informed me that Asperger syndrome was 'excuse of the week' and didn't actually exist! he told me that my working diagnosis was given because 'there probably wasn't actually anything to prove it' and that was why it wasn't a full diagnosis. he said that it was just an excuse to explain away naturally occurring excentricities in people, and that was a way to explain away the behaviour of children who 'needed a slap'! i backed off of that and said that the psychiatrist had also said i needed some CBT to reinforce things i'd learned last time i'd had it. my oh so charming GP said i couldn't have any as it only worked for people who 'were going to make an effort to change'. i am absolutely stunned that this conversation even happened. so i suppose i want to know if anyone else has experienced something like this, or if you have any advice on what i can do now. i am going to try a different doctor at the same surgery to see if that works any better (like maybe admitting that Autism does exist!), but there is only one doctors surgery within a 30 minute drive so moving surgeries isn't an option.

thanks a lot, that's really helped me understand it a bit more. the diagnosis is for me (22), but i'm in my final year at uni so they're trying to get everything done in the next 3 weeks, and it seems they keep forgetting to tell me whats going on. i just get a list of appointments to show up to! i know the psychiatrist has written a report to send to both my uni GP and my home one, so i'll go bother a doctor tomorrow and see what they say. i've also now managed to locate an NHS adult diagnosis centre reasonably close to home so if i do need any more testing i can ask for them to refer me there. this is all made harder because i'm away from home and completely useless at functioning well enough to live on my own. anyway, thanks again for the advice

i've had a some-what sped up but similar experience. i have seen 5 GP's and a psychiatric nurse who's sole contribution to my diagnosis was 'yeah there's probably something going on but i dont know'. so i went to my unis disability office and the woman there was fantastic. they got me funding through the uni to see a psychiatrist who specialises in developmental and learning issues, and she has given me the working diagnosis of aspergers and a report that says 'working diagnosis', based on one long interview. i then was sent to see an educational psychologist who it was initially thought would give me the proper diagnosis, but instead turned out to just be assessing the difficulties the AS gives me, (and informed me i'm dyslexic as well!). so now i dont know if i have enough of a diagnosis or not...

i was wondering if anyone can give me any advice on what the next step is towards having a complete diagnosis. i have a working diagnosis from a psychologist, and i had an Educational Psychologist assessment last week, but i think i might have missed a step in the middle and there's something else i'm meant to do to get a complete diagnosis of Asperger Syndrome?