kelly69

The school have been very good, we live rurally and the school only has approx 100 pupils so although they don't have the staff to give extra staffing support he's had extra support in that when he's 'wound up' they let him pace the hall or go into the library and if he's having an especially bad day he will go outside and do physical work with the janitor rather than have to sit in the classroom. He does see a behavioural support worker on a Friday in school. We are really struggling with his motivation to write so I want to discuss that with the school (we had a new headteacher start this week). As far as I know the educational psychologist will become involved now and there's a transition support worker who will become involved over the next school year.

I had forgotten all about joining this forum 5 years ago and had not been back much after our disappointing result from the ADOS in 2009. Anyway to cut a long story short we were finally referred to CAMHS in September 2012 when Charlie was starting Primary 6 as we were having huge issues with him at home and in school. He had an ADOS again in April this year and yesterday we were told he has ASD with significant impairment in communication and social interaction (no theory of mind at all, no emotive gesturing etc etc.) It was such a huge relief to finally have someone say that we were right and things weren't exactly as we'd expect them to be in a boy of his age (he's now 11). I'm now hoping to utilise this forum properly and hopefully vent as we make the progression into the final year of primary school after summer and onwards to high school. Kelly x

I'm not actually convinced that he has an ASD but there is 'something'. I've done some reading on ADHD and to be honest that seems to fit him more than an ASD in that he can't control him impulsivness, can't settle to anything, doesn't like writing and lots and lots of other things, particularly his violence and agression. Hopefully my appointment to see her will come soon so I have a clearer idea but for now i'll just carry on as we have been and hope we get somewhere. Thank you all for fantastic advice x

The consultant paed is going to be sending me out another appointment for just me to go in and discuss the report after discussing things with the school. Its not like i'm disappointed there's no ASD, just confused. It was 2 school paeds that pushed him through for assessment after believing there was something wrong. ADHD was mentioned at the first appointment with the consultant paed so maybe its that? Whatever it is, there's something just not 'clicking' with him (well lots of somethings according to the report!)

So does that mean that I'm just a terrible blooming parent? I don't know where I go from here, he has obvious difficulties which are mentioned in the report and his behaviour is ###### horrible but there's nothing wrong with him?

I just wanted to do a wee update on DS1 since it's been a couple of months and we've had some developments. At the end of June we got an appointment through to go and see the Community Child Health Paed at the hospital (following on from the interview with the paed that comes into school). We went to that and Charlie was a bit nervous but not the worst i've seen him. There were 3 doctors in the room (2 women and 1 man), one lady interviewed me for the hour going through his entire history and the other 2 played games with Charlie, including making masks and playing connect 4. At the end of the appointment they had come to the conclusion that his most likely diagnosis will be HFA/AS as well as ADHD. This was the first time ADHD had come up in any conversations but from their observations and my history of him that's what they think. I was sent 2 questionnaires in the post by the doctor, one for ADHD, one for autism. I have completed them and returned them. We are now waiting to go back to school (next week!) and the school will complete the same questionnaires and a history of what he's like at school and then we'll go for another hour long appointment where he will do the same things but without me and will be videoed. Standard practice from what i've heard! So that was all very positive and then he surprised us all, his dad took him on holiday and bribed him to poo for a fortnight! Every day that he did a poo he got an ice cream. He continued this when he came home and we made an agreement that he'd wipe his own bottom and not flush so that my DH could check later in the evening that he'd been for one (I work evenings). So for the past 5 weeks he's been pooing around 4 or 5 times a week! Then 3 weeks ago I told DS2 that I was taking him out of night time nappies as he was big enough now to manage without them. I never said anything to Charlie other than the fact that it was up to him if he wanted to try without or not (up till this point he'd always been soaked in the morning even with a nappy on). Charlie said he was continuing with nappies but secretly decided not to! In the past 3 weeks we've only had 1 night time accident from him. So that's 2 major things he's managed to get his head around and i'm sooooo happy, both for him and me! We are still having a lot of meltdowns and violence but probably not quite as sustained as they were prior to the pooing regularly. Each time he hits out at either me or ds2 he is told quite clearly that he is not allowed to hit people. Hopefully by repeating this message he'll 'get' it. Then last week we had a social worker round from the family support unit, she is going to look into getting us a family support worker who has experience with violent behaviour so that they can do some work with Charlie into controlling his behaviours. So major progress this summer!

What a relief that there's someone else out there having the same battles! Its also good to hear that Charlie isn't the only one who just doesn't like the timetables and such. I'm sure all his issues are to do with control so i'm going to reattempt the timetable but let him put the things on it instead. Anyway the good news is that after a horrendous weekend of poo related incidents he finally managed to block the toilet yesterday and was an altogether happier boy this morning!

Thanks Kazzen, I shall look for that book too. Thanks also to NobbyNobbs and Mumble, I know that the poo does have something to do with it but we're no-where near his all time poo record yet. He's taking Movicol and Senna to get moving but nothing as yet. Over the weekend i'll put him on to the maximum dose and hopefully get him going. We do have a consultant at the hospital we can contact but DS has a terrible 'fear' of hospitals and doctors so we currently liase with the consultant through our GP (who DS likes) after a disastrous hospital appointment in March. If we make no progress over the weekend I'll keep him at home on Monday and contact the GP for advice. Smiley, I don't know if anything is bothering him at school or not. His teacher often feels like he's forcing himself to be 'good' so maybe its just as simple as that. That he's used up all his 'good' in school and needs to let it out at home. Thanks for all the advice, its somewhat reassuring to know that other people are coping with the exact same thing.

Thanks for the reply Gavin, I guess in my ramble this morning I should've listed the things we've tried so far. Its all very hard since we don't have a diagnosis and actually struggle to see what sets him off (other than not having had a poo for 12 days and counting). We do try time out and I consistently remove him to the hall but he just wrecks everything and kicks the doors and walls and swings on the banister and it seems to aggravate him more. He definitly craves attention but also wants to control the attention. We put a visual timetable into place on the advice of the paed (we had been having major difficulties getting him to school) but that's just a major trigger point for him. We've approached it several different ways but so far no joy. We're still persevering with it on days where he doesn't seem to be rumbling for a fight but on other days when he gets up with a rage it has to be removed before he rips it off the wall and starts trashing the kitchen. I shall deffo look for the book though, the paed recommended another one and I can't remember what it's called. I shall have to ring her and find out, I just don't know what to do for the best to be honest, when he's lovely, he's adorable. When he's in meltdown I could happily drive him to the countryside and leave him there. I might just ring the GP and see if he can find out what's happening with the referrals and take it from there. ta, Kelly

Hi there, i've just spent a couple of hours reading through the posts to see if I can find something that will help us. My 7 year old son is undergoing diagnosis for an ASD. I say undergoing diagnosis, nothing has actually happened so far other than 2 meetings with 2 different school paediatricians (we moved house) who both say Aspergers. The most recent meeting was 23rd April where we were told she was referring him for an official diagnosis and we've heard nothing else. Anyway in addition to suspected AS he has bowel and bladder issues. The bowel one we thought was under control with movicol and we had him going to the toilet regularly for about 6 weeks. If he hasn't been for a bowel movement his temper/attitude/behaviour is generally much worse. I mentioned at our last paed appt that he is very and increasingly violent at home. He appears to cope through the school day but just is in a permanent meltdown at home and generally aims the worst of his violence towards me. I really don't know what to do, so far this week i've been kicked (a lot - my legs are black and blue), punched in the throat this morning and scratched and bitten. In the car he has very nearly made me crash from hitting the back of my seat/head. He used to just aim it all at me or inanimate objects (like walls and doors) but recently he's started on my younger son too. This morning he punched him really hard in the chest and has left a mark. I'm fairly sure its all to do with control but I don't know what sets him off. Once he's started he can't seem to stop himself either and usually doesn't remember any of it once he's calmed down and being lovely. His favourite line is 'you're NOT the boss'. Any advice will be gratefully appreciated, I don't know whether I should go and see our GP or chase up the paediatrician or what. All I do know is its now 2 weeks until the summer holidays and then we'll have the best part of 2 months of this with him at home all the time. thanks, Kelly