sueeltringham

My son had a multiagency assessment as part of the CAMHS team. The ADOS was one aspect of the assessment. It was videoed. He came out with a diagnosis of high functioning autism. On bad days, my son is not particularly co-operative, in fact he has totally his own adgenda. Of course he'd co-operated well with other assessments and visits. They had loads of toys in a room and followed his lead. They would then try and distract with other toys. Of course he was 'locked' in his play and would not participate in the role play (this was him at his worst). It was really interesting to watch and the professionals present were quite surprised at the results. We weren't surprised at all -in fact he got the diagnosis we expected. After the assessment, the SALT was quite apologetic that they hadn't listened to us parents two years before! She also admitted that he should perhaps have had earlier intervention. In a way he'd shown some of his worst behaviours and the session ended with him on his back and all legs in the air like a beetle which I had to try and 'pick him up' from. I found it quite upsetting, and ds was totally stressed out, but we got the diagnosis that I'd been telling school all along. Good luck with your assessment, Sue

Brilliant news! I can only imagine how happy you are feeling and think you are doing a great thing by rejoicing quietly. Well done Bill! Sue

An incredibly difficult situation to be in for all of you and sending lots of hugs. Of course you don't want to back down, but I was wondering if there was some sort of compromise, otherwise your relationship is going to downward spiral even further and also his behaviour, etc. I'm thinking along the lines of a police caution which would mean that if he ever gets in trouble with the police again, then he will be charged. He needs to understand this. Also, a written contract drawn up with your son agreeing what he has to do to improve NOW -step by step and agreed by both/all of you with a timescale and targets. If he can't agree to this then you have to go ahead and press charges and he needs to understand this. You would be offering him a 'way out' but he's going to have to take responsibility. Sorry if this sounds ridiculous, I was trying to think of a solution and, of course, I don't know the history. Sue

We have very similar problems. At first I thought it was related to school, but I now know it isn't. Volume control is a common problem for kids on the spectrum. The way we've tackled it is by using a level 1, 2, 3, 4, 5 system level 1 is quiet used for most 1:1 conversations, eg at the dinner table, sitting next to someone. Level 5 is shouting at the top of your voice. We started off with visual cards and talked and demonstrated the different levels, then over the next few weeks we would tell him the level he was at (or show card) and then ask for level 1. After about six months of this, we seem to have got somewhere. While visiting recently, I could whisper 'level 1' in his ear and he knew to lower his voice, without others noticing! It's working well now, but he still needs constant reminders in new situations. Hope that helps, Sue

My DS licks and 'mouths' lots of objects. I've got to watch him like a hawk because if he likes objects in a shop he will often pick it up and start to mouth it first, even though he knows he shouldn't. He also chews other objects -anything that looks chewable like a jumper sleeve or dolls leg!!! We know this is related to his sensory issues as he seems to seek stimulation in the mouth area. He loves the hottest chilli sauce and can't get enough of it. We're currently trying to think of ways to divert his desire to 'chew'. An OT recently suggested chewing gum, but I don't think this will be accepted by school. If he is allowed to chew, he is really calm and is able to concentrate more. It might be useful to work out why your son like licking things and watch his behaviour before and after to see if it gives clues towards sensory? Sue

Just a quick reply, but our experiences. The 3 D's: Diagnose (but couldn't clinical psychologist was unable to explain or interpret) Discharge (we were told we 'the parents' were now our son's therapists and it was down to us!) Dire, disorganised (we were not told about our final diagnosis appointment until I found out by accident the night before) Trying to find something positive to say. I have heard some positive reports from a friend, but sadly that was not our experience. Oh, and if we need to be re-referred to this service, we will have to go via our GP and wait 8 months AGAIN! Sue

Well I voted that it was pointless for me! I can see the value in studying it, but not for everyone -btw, I hated it at school, but we had the choice to drop the subject back then! Sue

I don't know the prices, but I know it's horrendously expensive as a friend looked into buying some for a coffee/ice cream/farm venture. I did once hire some from a toy library. Failing that, I've had great success with piling lots of huge cushions on the floor and then getting him to jump off a chair. This seemed to satisfy his desire to jump on the furniture. Hope that helps, Sue

My DS, unusually, gets jokes, makes them up and understands new ones! It's one of the things that made teachers and other professionals think there was no way he could have an ASD. The only thing is he often tells the same thing again and again and again. So much that we had to write a social story!

Thanks for the replies. We were referred to the OT by the diagnosing paed and she was a specialist sensory OT, so I feel confident that we've had a thorough and relevant assessment. The OT was actually from a private company whose services were bought by our local NHS to reduce the atrocious waiting lists we have here. I've spoken to our Head teacher today who thought that some of the recommendations were very OTT! I'm not really sure why she should object so strongly to the recommendations???? I totally disagreed with her as we have found some of the strategies to work -particularly the deep pressure/massage so I could see a weighted blanket working well. I guess we need to find out how much we can get by borrowing/lending or other sources, but I have a feeling we'll have to fund the integration therapy seperately. Ian Jordan -can you explain more about the optic ataxia and magnocellular / parvocellular processing deficits -who would look at these? Thanks once again! Sue

We've finally (after 18 months) got my son assessed by an OT. We knew he had loads of sensory issues, but now we've got it in writing to prove it! Now we've got a choice -do we wait for NHS to take action on the recommendations of the assessment, or do we go private and get him sensory integration therapy? The report also recommended weighted blankets/jackets, a vibrating seat pad, various programmes to improve motor skills, school visits, handwriting programme. I'm trying to be realistic, but I don't think we'll get much of this on the NHS will we? I would really welcome everybodies experiences so I can plan a way forward, and hopefully try and find some way of funding all this!! Sue

I think I would persue it further. It seems perfectly reasonable to me for him to go into the classroom first, maybe to do a 'job'. I would even push for it to be a routine on a regular basis until he is more settled! I think it's very unreasonable they've refused, and to do so means they are not understanding his problems/sensory issues/special needs at all. Have staff had autism awareness training? If they haven't maybe you could suggest it? Someone came into my sons school and all staff were trained. Part of this training involved flashing lights, playing music full blast, spraying smells and asking staff to complete a complex task. This helped to make staff realise how difficult classrooms, etc can be for children with ASD. Hope you get a more positive response, Sue

Well done! I'm still working on potatoes. My son can't stand chips!? He has lots of sensory issues and is really particular about food, but also unpredictable. However, last week I got him to eat various things that really surprised me, including vegetable curry! Secret for us? Raging hot chilli sauce. He even ate stir fry (green beans and baby corn with tofu) tonight because i put chilli sauce in it! I'm gobsmacked! I think we've made a breakthrough! Sue

Well I sprayed the curtains and sofa with oven cleaner which I had taken to be Febreze (had visitors due any minute)! I'd sprayed the whole lot too, before I realised! Fortunately, it was a special environmentally friendly, detergent based oven cleaner, so our furnishings have survived to tell the tale with lots of white speckles. Sue

We've had lots of problems with this, on and off. My son retains and it's a vicious circle -the more he holds on (up to five days), the more he retains so we end up with the bullets and runny poo scenario with horrendous behaviour. We tried lactulose and it made the problem worse as it gave him wind and made him less likely to go to the loo! For us, Senna was the best (prescribed by paed, but I think you can buy it?). We started off with a really low dose (can't remember what, but less than half the recommended for age) and just upped it until it worked. It was good because it takes about 8 hours to work, so we gave it in the morning and by teatime it would work! This avoided the 'school' problem. It was so predictable and easy to work into our routine whenever he started retaining so it broke the cycle. It could be worth asking about it? Sue

Yes we have this with my ds, nearly 7! In fact I am so cross today as he missed school yesterday (chilling out with anxiety related probs). The teacher doesn't understand why he doesn't display signs of anxiety at school and yet comes home a very distressed/anxious/hyperactive child. I have tried to explain that this is really common, but feel like I'm hitting my head on a brick wall.

Hi, I'm in a similar position with a toddler and multiple food allergies (milk, egg, nuts, kiwi, pulses). It basically means we can't go anywhere without specially prepared food, epipens, medications, etc. Everything I cook is from scratch as even free from ranges seem to contain allergens we are trying to avoid. I'd never really thought about DLA for my youngest, but having read this post has made me realise it should be a valid reason to apply! Mmmmm off to get thinking cap on! Sue

OK, I'm going to really upset the apple cart: Statements are very, very expensive for an LEA to produce. I would far rather money be spent on children with SEN getting help in school. Perhaps those children that need help should be identified more thoroughly and consistently in all schools and at an earlier age. I can think of many children that I've taught with an ASD, who've not been statemented and have not needed a statement. I would hate to think that money would have been wasted in these cases. Statements should be written for children that have the need, and the diagnosis is actually irrelevant. Now, I'm going to take my teachers hat off. I'm also a parent of a child with an ASD. We fought really hard to get him diagnosed. It took 2 years (which I gather is actually quite quick). However, in those 2 years in preschool and reception class, he still had his SEN/difficulties. Did he get any help? NO! No-one would listen until we got the diagnosis. We then had to fight to get a statement. I'm worried that in some authorities the system suggested already exists! Sorry, I can see where you're coming from and I really sympathise, but I cannot agree. Sue

My son had problems with assembly and other events in the hall. Part of the problem was where he was sat. A specialist teacher worked out that he was best if he was at the front, but on the end. He copes quite well now and has stopped all the spinning behaviour, but if he does start to look distressed, then his LSA takes him out. This seems to work really well. Sue

Just wanted to say we were in a similar situation last year (we're in Northumberland too). Communication support were fantastic for us and really changed things in school for my son. There were lots of things that school were resistant to, refused to do, but communication support ensured that everything was put in place. Good luck, Sue

We do the camping thing too! I've got to say it's fab for my kids. DS just spends hours and hours being in open air, where his sensory issues are hardly evident and he becomes so happy it's untrue. I've got to say we've just upgraded to a small, old caravan (done tents for years) and it's even more fab. We have our own home which he's used to (and retreats to at home!) and we pick small quiet campsites in very beautiful places. Of course, it takes a phenomenal amount of preparation -talking about the campsite/route and using any visuals we can get hold of before we go. Our favourite places are the Lakes and Scotland, but we can reach either in about 2 hours. I'd highly recommend trying to borrow or hire equipment before you buy. Sue

Hugs for you! Although we knew our son's diagnosis (HFA/AS), it came as a surprise to the professionals, just how high he scored too! I remember still feeling incredibly shocked, even though we knew. My son's much younger (5 at diagnosis), but we have explained it that his brain works and thinks differently to other people. He had started wondering why he was different to the rest of his class. We've tried to be very open and very positive. It was difficult to do otherwise as we had loads of different appointments with different professionals and ds wanted to know where and why we were going. I'm sure other people will have loads of advice to give. Sue

Just a quick note as I'm off to bed and didn't want to read and run. Your post sounds EXACTLY like the position we were in just over a year ago when my son was in reception. His needs were not being met and he had loads of sensory issues. He was being treated as a 'naughty boy' and the behaviours just got worse. I want to send lots of hugs to tell you that if you can get your son in the right environment, with a supportive teacher things will improve massively. We now have a statement and a supportive head teacher and class teachers. My son stayed at his school, but this was mainly because staff changed and he was statemented. I know things feel incredibly bad right now, but try to look at all the options. Whatever your son is diagnosed with/or not, he needs a different environment with supportive staff. If the school is not prepared to change, then you need to look at other schools, as your son will not be able to change. Sending you lots and lots of hugs. Sue

We're still waiting for an OT appointment. It's been well over a year now. My son has lots of sensory and avoidance issues, possibly dyspraxia. We really need an assessment. Sue

We were discharged from paed following diagnosis. I resisted and resisted and argued and dug my heels in, but was told that unless we had any specific problem then we would be discharged and we would have to go back to GP with any future problems and get another referral. CAMHS and the SLT did the same. So, now if we have a problem we are left to our own devices as it is now more than six months since any of the last appointments. I hate going to the GP and it often takes us a while to realise that something has really become a problem i.e. dealing with the anxiety and panic attacks. I think we deserve much better than this. You can't just diagnose then discard! Sue