Mirabelle

Thanks respondees. We were offered details of a local group where we could chat to other parents in similar situations, but - aside from not being able to leave DD to attend even if we wanted to - nothing of concrete help. The school have been very good, it was they who pointed us in the direction of AS to start with last year. DD is quite independent/mildly affected relatively speaking, she goes out by helself and with friends, so there's no way we'd qualify for DLA for example, but she needs a great deal of gentle propping up all the time - that she doesn't realise that she's getting, as she won't accept she's got any sort of condition yet. When everything is going fine, she's fine, but when it doesn't or when something just isn't to her liking is when you see the extreme reaction to the situation. Oh well, we've made the best of it so far and we'll just carry on doing that.

DD(12) has now been diagnosed with Dyspraxia and 'on the autistic spectrum' (AS to you and me), by CAHMS who are now 'closing their files'. Is that it ? Is it now down to us alone to make the best of it ?

Is there anyone (else) who has had an experience of a child who refuses to accept they have AS ?

Our DD(12) is a very fussy eater, to put it mildly. She's vegetarian, but doesn't like cooked vegetables, only raw ones. She only likes one type of Quorn, the southern fried chicken-type burgers. And she'll have veggie frankfurters, but only in HM pastry. She used to have quorn ham in her packed lunch, or cheese, but has gone off of both. All she has now is dry baguette style rolls with squeezy marmite (if filled in advance it "goes soggy", no surprise with no butter etc). It's not just food, it's drink too. Currently, she'll only have peach flavoured water. And most difficultly, she'll go off all of these things in time and it'll be a real struggle to replace them with anything. And so on, I could list a whole lot more. Basically, she doesn't like eating and drinking.

DD used to - not so much now - complain intensely about the wrinkled fingers you get from being in the bath. Now it's just a general struggle to get her clean, 1 bath or shower a week is a success. She wants her hair washed regularly though, sometimes she'll do that by herself.

The appt was supposed to be this afternoon. DD had refused to go (as previously), so we decided this time to go without her (I booked a day off work) and have the sort of discussion we couldn't have in front of her. Anyway, CAHMS phoned this morning, the nurse is off sick. I'm relieved that we'd not had the battle to force dd to go only for it not to happen, but I still don't know whether to smile or cry...

Thanks. However, I think we've got enough of a 'her v us' situation already though, I don't want to exacerbate it yet further as I'm trying to get across to her that the appts are to help all of us rather than to 'prove' that we're right and that there's something wrong with her. Which is the case - we do all need help ! The last time we saw a 'clinical nurse specialist' (the first appt was a child psychiatrist doctor). The nurse tried to encourage her to come along next time, but you're right that a planned separate appt would be good too.

DD is 12 now, and has always struggled socially and with her temper etc. She started secondary last Sept and it all magnified. The school told us that they thought possible AS, we read all we could and yes it all seems to fit. So we started going down the medical route, but dd is completely against it all. She doesn't accept that she's got a problem at all, and by doing it we're "ruining her life" etc. The lead up to the two previous CAHMS appts led to meltdowns, and when we were there she refused to participate at all. She's got a couple of friends now, but that's really down to the school. We don't want to point that out much though as it will make her feel worse, but as it is it 'proves' that she hasn't got a problem from her perspective. Anyway, we've another appt for next week which she's once again refusing to go to. In one way it might help if she wasn't there so that we could talk more openly about how bad it is day in day out without her hearing it, however, the downside is that she'll then accuse us of telling them all sorts of lies about her, and also that if we don't force her to go this once she'll think that she can avoid it in future which really can't be allowed to happen. However many discussions we try to have, which normally end in blow-ups anyway, she sees it as being taken for 'freak tests' (thanks Luke Jackson !) and simply won't accept that she is different and that we all need help. Thanks for reading, any opinions welcomed !

Many thanks, Caroline - this helps a great deal in knowing how to organise stuff that we will need to provide. I would not hold my breath when it comes to seeking DLA - firstly, the other half and I both work full time, and whilst on paper we are rolling in it, the reality is very different, as we see precious little of the money we earn. My other half is M's stepfather, and has a son from his first marriage that he pays maintenance for (which is as it should be), but M's father is long-term unemployed and we get �5 per week from CSA, which makes all the difference... Not ! We have not even been deemed entitled to child tax credits for years (although now we get �40 per month) - we have not even recieved child benefit for years because the ex used to claim that (and not pass it on), and it took forever to convince the relevant authorities that the child in question was not living with her father and get the benefit paid to us. Furthermore, I just don't rate my chances of convincing anyone in charge of doling out money that this eloquent little madam with a trendy haircut, pancake makeup and dyed red hair (all recent developments - stuff she had to have in an attempt to fit in) is incapable of washing and styling her own hair, getting herself dressed, packing her own schoolbag, has to have the make-up applied for her as she can't get the grasp of it herself... And that most certainly has been the case for her. In fact, in terms of looking after herself she has regressed several years since her difficulties at school started. Trying to convince a suspicious someone that she is not merely "playing up". "trying it on", and that she most certainly can not be left to "just get on with it"... I can't see how I could do that. Regarding all the trendy haircuts, bags, clothes, mobile phones and make-up she recently had to have in an attempt to fit in - we have been reading Tony Attwood and Luke Jackson's Freaks, Geeks, and Asperger's Syndrome, and they both stress the importance of letting the kids have stuff other kids have in order to fit in a bit better and not be picked on so much - but we really are struggling to afford all the "gear" that now seems obligatory for a pre-teen girl. And don't even get me started on the home educating option (which M has been mentioning every time things get bad at school, as one of her classmates' sister is home educated, so she is very aware of the option). Without my income, we would not be able to pay the bills, simple as that. I know I am sounding like a right old whinger - and I promise, I am not usually like that at all, but right now I do not seem to be able to see the wood for the trees - but even the books that are designed to help just seem a part of conspiracy to make me feel like an inadequate parent. But hey, if things feel they have hit rokc bottom, then it means they can only get better, right ?

Thanks, Karen - and sorry for getting so long to get back and say thanks ! The problems my daughter has been experiencing have resulted in her being extremely "clingy" even when she is having a good day (which isn't very often, but more often than before we realised what the root cause of the problems was), which means that I am not really allowed any time on my own at home. I wouldn't mind as long as it helps, but the problem is that if I don't have any time on my own I tend to disintegrate under pressure, and I also feel that she is bugged by my constant presence, much as she seeks it all the time, resulting in seemingly unprovoked eruptions. And as her need to be accepted for who she is by someone, even if it is just her mum is too great at the moment for her to realise that, actually, some time on her own would help clear her head a bit... Still, we have all just started learning about what works for us, and we've got to put out all the current fires before we can look to installing some fireguards, as it were. Anyway, I just wanted to say that, much as I am sure that you will probably share many of my frustrations, at least Ben is in the position where you are all aware that he will have this problems, and can help him deal with it from the word go. Because we have always been told, and believed, that M will eventually "grow out of" her "social ineptitude", we have thrown her into the deep end and as a result nearly had her drown.

That is exactly what I'm worried about ! And what always happens unless I know enough about the situation in advance in order to keep some semblance of control. Thanks, coolblue, excellent advice

Thank you, Karen - for the information and for the welcome This helps a lot - things are stressful enough for her at the moment, having to take her into a situation I can tell her nothing about would be highly unlikely to help in any way... The school is already working on it, and we have had contact with the SENCO - I think that most staff are aware of the situation now, and LSA help will be enlisted to try and get her back into the things that she "opted out" of - for instance, she has an outstanding ability in science, but all attempts to get her to join in with the practical side of the lessons have failed. When I tried to find out why that is the case, it turned out that all practical aspects of the lesson start with "now pair up" or "now organise yourselves into groups"... Nope, ain't gonna happen ! Of course, nothing is foolproof, is it ? Last Friday she had her guitar lesson during Design Technology, and as they only changed from Textiles to Resistant Materials this term, the new teacher was not familiar with her and her problems, and when she pointed out that she missed the explanation as to how to do the homework, she was told that she'd "Just have to ask one of her friends to explain it to her". She doesn't have any friends in the class. In fact, no other child will speak to her. Cue a weekend of extreme distress because she feels like a freak because she is unable to interact with people on their terms. Sorry for the stream of consciousness - as you might be able to tell, apart from the OH, I have no one else to talk to about this...

Hi, I hope someone will be able to help - I've been searching for info for weeks and just seem to be hitting brick walls at every turn. My soon-to-be-12 year old daughter has encountered serious difficulties since starting secondary school in September. Without going into much detail at this stage - I am sure that it would all sound all too familiar to most of you anyway (I have been reading the forum for a few days now and have now got a bad neck due to all the nodding I have been doing at many of your posts !) - Asperger's Syndrome has been mentioned. Having done some quick research into it (I am afraid that we have been completely ignorant about AS up until that point), we are pretty certain that the school are right. The question is, what do I have to do now ? What happens next ? We have read Tony Attwood's book and put in emergency measures based on his advice at home to help her deal with stress/anxiety/moderate her behaviour. The school are sending out a form to the Children and Young People Inclusion Service (I believe it's called), and the staff have been informed of the problem so they help avoid situations that she can not handle (mostly to do with the social/teamwork aspect of the lessons; she is sailing through the academic curriculum for now - I do not expect that to continue for much longer unless she gets more help and urgently though, the state she is in now), she has been allowed to spend lunchtimes in a quiet, safe area, to avoid other girls picking on her - I believe we have been quite fortunate with the school. However, for her to get all the help she needs (and I have to admit that at the moment we need help too - we are struggling badly and seemingly failing to help no matter what we do), she needs to get a diagnosis, and I would appreciate it very much if someone could tell me how that gets done. I know I need to go to the GP and ask for a referral - who to ? A clinical psychologist or someone else ? How much information do I need to give to GP in order not to be fobbed off ? Will the GP agree to refer her if she is not present at the GPs appointment (I don't want to be mentioning AS to her at this stage - we are still working on introducing the idea gently to her so she wouldn't feel that there was something "wrong" with her) ? If we get a referral, how long are we likely to have to wait, and what happens next ? Any information at all would be very, very much appreciated. We are in Northampton area, does anyone have any experiences of this in this area - PM would be fine if you'd rather not publicise your location on a public forum. Many, many thanks for reading this far - it has turned into a bit of an epic post, but then again, I have never known when to stop when faced with a keyboard and a blank e-page....