KarenT

Sounds very similar to our experience jollypig - no intervention until there's a formal diagnosis. Mind you, they didn't do anything once he'd got one, either so in the end we had no choice but to HE. Fortunately it's working out for the best. Good luck with your daughter's new school. Karen x

My son struggles with writing too, among other things. It was really beginning to hold him back but he wasn't getting any help for it. Found out recently he has hypemobile joints which I'm sure didn't help - he's obviously been in discomfort for years . HE means we can concentrate on his handwriting more than would happen at school. For longer writing he can use the computer and type his answers, and we can work at a pace that suits him - if it's getting too much he can take a break and come back later. Same with other things he struggles with, like social skills, understanding emotions, communication, which we can fit into his day. He never had anything like that at school, was just expected to be the same as everyone else. We did think about applying for secondary but to be honest I don't have the confidence that they'd support him as he needs. His problems are rather subtle and not obvious to those who don't understand Asperger's - you really need to know what you're looking for to understand where his difficulties lie. Besides, J's had so much negative experience at school that he can't bring himself to feel good about it. He enjoys HE has friends for the first time (ie people who like him rather than pretending as an excuse to tease him for laughs), and he's learning more than ever. Hope the taster days go well for your son and he settles OK into secondary. When will you know if he has a place? Good luck Karen x

I took my son out at the beginning of Y5 for similar reasons. No support whatsoever despite mounting problems. We're stil HEing and he's doing well. Did you deregister or is he still on the LEA roll? Karen x

Try doing some gentle micky-taking at home. Social stories might help but it's a difficult topic to broach - too many complications and variables - so it might not have the desired results. We did a lot of stuff at home while playing board games, at the table for meals etc - just very gentle stuff at first followed by a clear explanation that I was 'taking the micky' and in time J was able to get it. He's quite good at it now, doesn't get stressed when people are teasing as he knows it's not serious. Karen x

Depends on when you're planning on taking her, Tally. If it's a daytime half term trip I'd avoid the museums as they're likely to be packed - the NHM has its new The Deep exhibition opening so it will be barmy in there. How about Greenwich? Loads to look at in the observatory (including planetarium shows, though you might need to pre-book) and the museums, and if the weather is good you've got the park, maybe even get the boat up the river into London for more options. Most of Greenwich is free, too. Whatever you do, I hope you have a fab day. We were in London at the end of March and can't wait to go back. Have a great time. Karen x

Remember also that discipline isn't just about punishment and sanctions. It also involves proactive planning to encourage appropriate behaviour in the first place. Reward and consequence systems are excellent and will work for most children whether on the spectrum or not, you just have to find the right motivator to help the child engage (and be prepared that motivators will change frequently). It's useful to have a Plan B up your sleeve for those times when he suddenly refuses to cooperate with something that's been attractive to him for ages We spent several years battling with the 'can he help it or can he not' conundrum but in the end we realised that it wasn't his understanding that was the problem but general social appropriateness. If the world won't tolerate a behaviour then somehow we have to find ways to modify it so that the child can have a place in society. Bad behaviour, naughtiness inappropriateness - whatever people choose to call it has to be acknowledged, disciplined if necessary and attempts made to correct it wherever possible but as others have said it can take years of trial and error approaches to find a method that produces results. Unfortunately you just have to keep at it. Karen x

Maybe you could give yourself a script to say whenever there's a knock at the door. Something like "I'm sorry, I don't have time to talk, goodbye". If it's a salesperson they'll still want to push you to give a time when it is convenient but you just repeat "No thank you" once and close the door. It's polite and keeps your privacy. I used to know a woman who also hated unexpected callers so whenever there was a knock at the door she'd put on her coat before answering. If it was someone she wanted to see she'd claim she'd just got home, if it was someone she didn't want to see she could say she was just on her way out. It worked very well for her but of course you still have to think on your feet a bit. I think it takes time and practice. As you rightly recognise there's no point in hiding away from it as it doesn't solve the problem. Perhaps the script might be a starting at least. Karen x

To be honest I don't think it's worth it now. I'm quite convinced the records no longer exist (this was 18 months ago), have been destroyed, and I'm not sure what purpose they'd serve me other than to confirm what I already know. We're no longer 'in the system' either with Education or hospital services (my son has slipped through so many nets it's a wonder he's not concussed) and his medical case was closed over a year ago without informing us - we use independent services to support him and of course we home educate now. Additionally there's the time factor. HE is extremely time-consuming and so is the therapeutic intervention he needs - again we have to arrange all of that ourselves. I have to stick to battles that I have a chance of winning if they're to be a constructive use of my time and as I have so little to gain from this there doesn't seem much point. I have much more pressing matters to focus on. Thanks for your interest and hope you manage to get the records you've requested. Karen x

More or less the same as I sent, apart from the line about anti-discrimination. It was definitely a deliberate act on the school's part to withhold his work record as I knew he was underperforming and I believe his record would have reflected this. I didn't get anything from his SN record either - in fact all I did get were his attendance record, his name and address (which surprisingly I already knew) and his projected key stage targets for Y5. The last correspondence was a claim that they'd already given me his records when they hadn't. As I said, the timing was poor and I know I should have pursued my request but because of everything else that was happening my main priority was to get my son settled and back on track, and into a new routine (we started HE at that point). The point I was making in telling of my experience is that it's not plain sailing even when you use the right letter - sometimes schools will still try to get out of providing records regardless of the law and it's worth beign prepared for that. Karen x

Subject Access Request is the right thing to do. However, be it's possible that you might still be refused access. I wrote to J's school under Subject Access Request plus other letters and emails and never got to see my son's records. I was actually told it contravened the Data Protection Act . I knew this wasn't true but could also see a lengthy battle ahead and too many other urgent matters to deal with to continue pursuing (I believe you only have a limited time to put your case, six months I think). I hope you have better luck than I did. Karen x

I didn't say 'always', said 'usually'. There are always exceptions to the rule, and (I'm reliably informed) only a Sith deals in absolutes I personally think that the 'uncontrollable' aspect does have an element of truth where younger children are concerned, and I agree with what you say about age and maturity being part of that. At six or seven years old J absolutely had no control over his anger and temper (in fact he was visibly shocked by it) and it would have been futile to assume he had, but in time and with the right guidance he was able to learn how to control it better. I do think that for some children there is limited ability to control themselves and it can be a very long and difficult journey to a point where they can, and perhaps this is where judgement errors can be made. It's hard for some parents to have the necessarily brutal honesty required to differentiate between what their child genuinely struggles with and when they're swinging the lead, but it's a skill we have to develop if we're to help them thrive. As you have said, disempowering doesn't do them any favours but it's important to recognise when there is real difficulty and provide the necessary support to enable them. I also hate Autism As A Competitive Sport (ie mine's more autistic than yours) - it's utterly pointless other than to the 'can't help it' culture of excusing inappropriate behaviours. Karen x

I reckon there's a huge difference between a tantrum and a meltdown. There is still control in a tantrum - it's usually an attention-seeking device, a way of getting what they want and being more and more obnoxious until they get it or burn themselves out, but essentially the key is that the child is still in control of what they are doing and could stop if they chose. A meltdown is way, way beyond that. It can begin with a tantrum but if the child pushes it too far and doesn't attempt to regain control it can escalate to a point where they can't bring themselves down - emotional overload of their own doing. But it can be brought on by so many other things, usually a combination of events, sensory input, activity overload or whatever, which obviously will vary depending on the child and/or circumstances. For J (and I believe for many children who experience true meltdowns), the identifying factor is a sort of memory loss in the minutes or seconds leading up to the loss of control and during part of the meltdown itself. Afterwards it can be very difficult to work out exactly what happened because there's a genuine lack of awareness of how events developed. We work with 5-point scales and they have helped J to recognise levels of irritation, leading to anger and rage and (rarely now) meltdown. I'd say we now have about 3-4 proper ones a year but where they once lasted several hours and he'd continue to 'rumble' for days afterwards, they are now blessedly short and he recovers quickly. But anger is still an issue, and unfortunately although he'd gained much more control over the years he's starting to have more flashes of temper as puberty takes hold. This one will run and run, I suspect, though we're contnuing to work on it. BTW, totally agree with the comment about over-use of extreme language to describe everyday feelings eg depression, meltdown etc. Language becomes devalued if it's used inappropriately and it limits true understanding of what those terms actually mean. Karen x

Take two towels. One will always fall in a puddle and it's harder to get dried with a damp towel. And you can wear your specs - I always do. Have fun! Karen x

This is my current favourite Bad Tatt: http://img.photobucket.com/albums/v370/ara..._cat_tattoo.jpg Bet he's a real hit with the ladies! Karen x

J never had any support throughout his whole school experience, right up till we pulled him out at the beginning of Y5. This was despite increasing behavioural problems and extreme violence - he was famously described by his first head teacher as 'the most violent child with Asperger's I've ever known', but still she wouldn't put in support for him although she knew he wasn't safe and other children weren't safe around him. She claimed her budget wouldn't run to it Staff started raising concerns as soon as he joined Reception but they never called in an Ed Psych. Still in the process of identifying his problem I was very unaware of autism at that point and ill-equipped to know what to ask for. I suppose I still trusted school to know what to do, but they didn't and in fact on many levels made matters far worse. I even have a letter from his head teacher following one particularly unpleasant incident, which outlined her intent to discriminate against him by not including him in similar events in the future because he clearly couldn't cope. We eventually got the Ed Psych involved but only for a specific piece of work on his anger (which we had to fight for) and this only lasted a few weeks because he then moved schools. To be blunt, J's support needs were ignored because his academic ability was so high. It was assumed that he was clever enough to know right from wrong - and indeed he did, he just couldn't act on that understanding in the heat of the moment. He desperately needed help but didn't get any. I was fobbed off countless times when I talked about statutory assessment and when I put in my own application it was rejected outright, based on the one-line report of an Ed Psych who'd never met him, never been to a meeting about him and to my knowledge had never even read a report about him. We tried another school with a strong reputation for supporting children with ASDs but once again he was ignored and neglected despite mounting evidence that he couldn't cope without support. In the end I reached the conclusion that he was never going to be supported within this LEA and was in fact being harmed, and that was when I brought him out to home educate. It means I have to pay for therapies but at least he's getting them and is thriving. What I'm saying is that there are no guarantees, and your child could go a very long time without support despite needs being recognised by the school. I would advise not to depend on school to push for support because it costs them money that they'd rather not spend - even the best and most supportive schools are bound by finance. You may be lucky and have a school that will recognise and act on your daughter's difficulties but you just don't know. Karen x

Thanks Sally, that's very helpful. I'm still without a SALT after our excellent private therapist decided to take a career break in the middle of the work she was doing with J, leaving us rather stranded. Trying to find another one but they are fairly thin on the ground, especially with ASD experience. Your info should come in handy - it's always useful to know exactly what you're asking for on the therapy trail. Hope things improve for your son and you get to the bottom of things in school. Karen x

hi Sally I've come to this thread late and haven't read it in detail, but a lot of what your saying rings true for my son too so I can sympathise with how frustrating it is. I think you've hit the nail on the head when you suspect a problem with transitions. It's also (for my son at least) about choice and control, and his biggest problem with dealing with those things is his inability to think quickly enough when put on the spot and expected to make a snap decision. Perhaps the same is true for your boy. It has helped for us to not offer choices that expect an instant answer. As well as a daily timetable we have a list on the wall that breaks things down to specifics, so he knows exactly what will be happening that day. Over time, he's learned that if something 'open' goes on the list (eg going to the shops), then there's the possibility that he'll have to face a decision within that when the time comes, perhaps about which shops we visit or what we'll be buying when there - but the point is he knows what the rough outline of the day will be and there are no major surprises. That said, over time he's become more used to accepting transitions and making spontaneous decisions that he wouldn't have coped with a few years back, but it's taken a lot of time and work. Even so, I'd think carefully even now about throwing something unexpected into the ring just in case he wasn't able to deal with it. Subconsciously, I'm assessing his mood, stability, depth of engagement in his current activity etc, before I make such an offer. But a couple of years ago he'd have completely blown his stack if I'd suggested something on the level of 'going to the allotment', particularly if it meant an immediate and he was involved in something else. For us, that would have been asking for trouble. I also found over the years that J did indeed have similar issues at school but they weren't mentioned and therefore never documented or dealt with. Although I accept that my experiences have made me a Grade 1 cynic I realise that this isn't the case for everyone, but I'd be cautious about accepting that your son never has these difficulties in school when they're so prevalent at home, particularly if they happen in other situations as they did for us. Your son's school may not be giving you the full picture for a variety of reasons, and I'd be probing further. As an aside, I'm interested that your son is meant to have what you describe as an 'emotional recognition programme' at school. Can you tell me who is meant to deliver this? J is now home educated so we don't have access to school-based therapies (actually, we never did even when he was at school, but that's another story) and we don't have links with statutory support services any more. I've been looking for something in this line for J for quite some time but have no idea who to approach. I'd be very grateful for any info you could give me about it so I can make further enquiries in my area. Hope things are better today. Karen x

Thinking of you, Paula <'> . It gets so hard, doesn't it? And from time to time I think a lot of us do wonder what's the point, where's it all leading, can my child ever have a future (can you tell I've had a similar weekend here ?) Episodes like the one you've described only remind us how fragile our kids are, that underneath all the progress there are still a lot of problems going on. Keep on doing what you're doing - like you say, there is no other way. And check the chocolates next time Karen x

Artemis Fowl and Percy Jackson Karen x

Thanks Lizzie. Will check messages and reply from there. K x

Thanks so much for the replies - lots of useful stuff here to go on Sorry Karen, I misunderstood about Ben's therapy. Good to hear that something has been of help to him though. It was the BACP site I looked at and I've found two ASD experienced therapists in my area, one of whom takes NHS referals. I'll make further enquires locally and perhaps contact the chap direct to ask if he feels he can help J with his specific difficulties, and if it looks appropriate I'll approach my GP for a referral. Mumble - thanks for telling your experiences with CBT - very helpful indeed. I do generally agree that a practitioner that's willing to learn is a positive, it's just that over the years I've had so many know-it-alls who think their way is right (regardless of ignorance when it comes to ASDs), so in this case I'd prefer to look for someone who has an insight into the condition AND is prepared to listen to how it affects J personally. There's a lot of generalised stereotyping among professionals and I'm sorry you've been on the receiving end of that, though it's good that you now have a positive relationship with your current therapist. Wend - thanks for the book recommendations, will look into those. Karen x

Thanks for the link Karen, I'll try to get hold of that book for some background reading. Good to hear Ben benefited from CBT. I've heard of others too but obviously every case is different so it's hard to make judgements as to whether it would be suitable for an individual. Doing some research now to find a practitioner locally, and will do some asking around. Thanks Karen x

Thanks for that Tally. I'm fairly familiar with CBT as I was assessed for it myself a few years ago (I have ME/CFS and it was assumed I must be depressed as a result ) but I didn't go on to actual therapy as the practitioner reckoned I'd been following the principles of CBT for a while without realising it For J, problems are surfacing in his academic work (he's home educated) and he's struggling to make sense of books, characters, motives etc and I can see this will have an impact on his learning in the future across a wide range of subjects. I've felt this was also an issue for him in real life situations for some time now, though my concerns were dismissed by various professionals. J had no practical input or support while at school and seems to have been dismissed by his NHS consultant who I think has recently closed his case without telling me, so I can't really ask advice there. That said, CAMHS have been no help in the past even when his case was open so no change there. Thanks for your input. I do realise that it's important to find a therapist who has an understanding of ASDs and CBT can be counter-productive when carried out by an inexperienced/unaware practitioner, so it's useful to hear experiences like this. thanks Karen x

Has anyone had experience of their AS child being seen by an autism specific CBT practitioner? I'm considering looking for one for J who finds it hard to understand and recount his own emotions and experiences and also to relate to those of other people, and have been told (by another parent) that CBT might help. I thought it might be useful to find out about other people's experiences first. Karen x

Very sorry to hear this Sally but it doesn't surprise me in the least. I've lost count of the number of times professionals have given me verbal accounts of J's difficulties then written something very different in formal reports. It is so frustrating to think that you've found a professional can trust someone then they do this to you, and your child is at the centre of it without the support they need. Perhaps you might want to say at the annual review what you've said here, refer to the blue cube/black cube test and other conversations you've had in which you've had it reported that your child has X needs and ask for an explanation of why that's not included in official reports. They won't like it but you have every reason to be angry and disappointed at their supposed findings and they surely must answer for these discrepancies. Hope you're not suffering from a hangover this morning Karen x