MelowMeldrew

He did grow out nappies. He kept wearing them because of his refusal to use the school or nursery toilet, then overnight he just decided to stop himself. We had in-depth monitoring to see WHAT regarding the toilet itself was triggering the obstinacy and failed. was it water ? taps ? flushing ? toilet paper aversion ? colour of the bathroom ? the aversion to toilet smells etc we could never pin it down. At 8 years of age he smeared the entire bedroom with excrement on a regular basis, so obviously smell/handling his own poo (!) wasn't the problem, again he suddenly decided to top all that himself but it took 14 months. They suggested giving him play doh to handle on the basis he liked the 'feel' ! I didn't go with it, as I felt that didn't actually address what was going on. The concern is that he seems totally aware and can at some points stop and start at will himself. That suggest attention-seeking to a degree, but is NOT, the sole reason. The situation is now manageable and has been a few years, it is the best we can get to. I've rarely met nor the Dr, a child's complete control over own bowels either. We tried to make him go to the tilet at school by giving him drinks prior to school attendance hoping nature would do its own work and he would use the toilet., but, he manages to contain his toilet over 12 hours easily, so it didn't work. I don't believe your child is anywhere near that so don't worry, they DO grow out of it and it CAN be managed. Did we get frustrated annoyed etc, you bet we did ! but panicking will just make it continue and you need oodles of patience obviously. Don't try to make him 'normal' like other children, it really does not work. We accommodate them they have no desire to accommodate us, at least my son is like that !

My son resisted all toilet training until 6 years of age, no matter how training was applied or who tried it we had nurses try it and failed. Then he decided to start using toilet on his own, that's how it works with mine ! he just suddenly gets the urge to comply (Or not!), and does it. However he WON'T use toilet paper under any circumstance, even now at near 18yrs of age. He does clean himself after using the toilet, but not very effectively. There appears to be no answer at present for mine. Any attempt at chiding or setting up an routine fails every time, even the school cannot influence him at all. They did try, he took the stance then of refusing ANY toilet use at school for 4 months as a result, so there was no way to build up a routine. This created more serious problems, so we let him attend to his toilet his way, but he locks us out we are not allowed to know how he is doing it ! I suspect it is hand washing. We know via clothing he is not doing it properly. We have pictorial representations up in the toilet so he can follow correct toilet routine, issued to us by the Dr and school, he ignores it, indeed sees it as a challenge. It is risky to keep on about it as he can refuse to use the toilet at all anywhere. he really is determined about it and aware enough to frustrate anyone who tries to change him. It has to come from him nowhere else. he is well aware of the routine.

My son had larger than usual head, (follows his dad I expect ). I was told a larger head is an indicator re autism, now it's a smaller one ?

It is about pain (Mental), most parents want an end to that. The frustrations the mental anguish and everything that goes with it, it is not about making things easier for me to handle but making his life a lot less stressful. If his personality is based on stress who would want that to continue ? Maybe we would have an happier albeit different child.... happy does it for me.

It's not just 'perception' or even acceptance or awareness, some of the issues our children face are very basic like toilet/dressing/washing/relating to people with extreme behaviour, that that cannot be glossed over by everyone turning a 'blind eye' to. Try pushing the acceptance angle when your child is screaming 24/7, it just is not going to happen or be made more 'acceptable'. It surely cannot be an autistic 'lifestyle' choice. These kids are in pain they don't cope it shows, it is not an cute 'rain man' approach we can just all go along with. Are they going to make all disabled issues part of a culture or something ? I wouldn't want my child hurt by any cure either, but any alleviation to make him at peace... I wouldn't be there demanding nothing changes to fit some 'fashion' for acceptance..

I forever fail to understand this world and the people in it Me too !

"The social model of disability identifies systemic barriers, negative attitudes and exclusion by society (purposely or inadvertently) that mean society is the main contributory factor in disabling people. While physical, sensory, intellectual, or psychological variations, may cause individual functional limitation or impairments, these do not have to lead to disability unless society fails to take account of and include people regardless of their individual differences. The origins of the approach can be traced to the 1960s; the specific term emerged from the United Kingdom in the 1980s." Socio-medical 'models' are an ideal more than a reality. Basically it is how the person define themselves NOT how society defines them. The politics of blame doesn't really alter much. Many issues disabled face do come from an medical standpoint,and it makes no difference tot hat disability if the door is easier to walk through, It is still there and maybe dependent on medications or therapies. My son has autism it wasn't inflicted by an uncaring society,my partner was born deaf, neither did society inflict that on her. You are talking about general acceptances with society, which I can agree with, but, if they accept us or ignore us, the disability remains. Many of us totally rely on Autism and other disabilities being accepted as a disability, without which we would not get care or financial support to cope. The danger is lauding the social model to the point where 'society' will then assume you don't have any problems, thus, require no help either, Cameron would love that. Basically the social sodel has become too 'political' and is hampering some support. We need support I don't care to play political games,who has the time or will ?

I'd take the cure for my child as well. Not for myself or his Mum but for him. Autism has robbed him of meaningful interaction with life.... He will never marry, is not some 'rain man' perhaps never have a friend or a girl friend, will always have to rely on others, I cannot understand anyone wanting to preserve an disablement as serious as that if a cure was available. Ignorance isn't bliss , it is cruel. It depends I suppose on which end of the AS spectrum your child is... Genetics are an personal bag, I can understand the fears about ridding society of disabled people and those disabled angry at that, but I can accept it if it means it can prevent it in the future. Let's face it, regardless what the UK thinks or feels there are other countries (The USA e.g.), who are quite prepared to offer any cure they think they can find, and many willing to pay the price too. Once the gates are opened many will just flood through, we would just be left behind with the moral high ground.

The issue is addressing it, not controlling it. Here seems an degree of attention-seeking with it too. (Which is strange given he already commands our attention 24hrs a day).

Seems my lad has no aversion to Germs ! he is quite comfortable handling poo. He has 20mg citolopram but I don't think this has much effect personally and 1mg of Rispirdone which is the only way he will sleep all night. He appears to need quite intensive OCD support, but we fear this means he will go away somewhere as my area has nothing at all. he has had poo issues since day one, it just keeps re-emerging at 2 yr intervals or near. MY son lives in the bathroom too ! he is keeping 2 adults on full-time cleaning duty at present, and no approach is making any impression at all. There was an BBC program on OCD's this week,however this worked only because the patient could be reasoned with and had a level of intelligence to understand, my son doesn't have this. If we cannot address it he will only get worse, frankly we are managing cleaning duties not addressing anything.

Doesn't seem to be a trigger, he just reverts. From what we can gather he has said he doesn't want 'poo' in his body so is determined to 'get it out'. He has gone partly sleeping at the school, but he started prior to that, we are at a loss really. It has caused anal bleeding recently, as he visits the toilet 10 times every hour.. We see the Doc next week, the advice seems certain to suggest he is sent somewhere.

Why ? does anyone else have things like this happening ? The lad was in nappies till 6, started using toilet properly after,then aged 8 stopped again and used to hide it (!) in his bedroom this went on 18 months, at age 9 started using toilet properly, now aged 17 has stopped using it appropriately yet again, and is in the bathroom 10-15 times every hour smearing everything. How do you toilet train an near 18yr old ? Absolutely nothing is deterring him.

20% means they don't have to pay out basically ! it is as simple as that.

This blog covers an issue where the Vaccine control people accepted it caused deafness, yet they refused to accept it could cause auitism.

You were lucky ! My child was diagnosed at 3-4yrs of age, in all the dealings I had with this Dr,not once did she tell me there was a special school he could have gone to. I was under the impression for many years there was no spscialist education here. I was very angry about that, I tell my child had lost 6 years of proper support at the most vital period of learning, in fact only when I pulled my child out of mainstream and refused to go any further, did a teacher tell me an special school existed. She was thanked by almost losing her job for telling me. I take no-one's word for anything now and offer up alternatives to medical opinion and education, they are NOT always right, most, work on the basis of cost not right.

I know Dr S she diagnosed my son. I don't always agree with what she says either. We have quite different views on communication approaches, whereby Dr S prefers parents organise every facet of an autistics life to 'control' behaviours where I am doing my damnedest to make him more self reliant. She needs to appreciate our children won't always be in some institutionalist-educational surrounding, and Dr S approach can just make it impossible for parents to cope after they leave them, this is not a good approach given S Wales has next to no ASD support at all that works, especially as a child approaches puberty and beyond, there can be nothing at all. Bristol is probably your best bet, I doubt S Wales has ANY alternatives you can consult.

Us Dads are often written off, but mostly, dads prefer not to communicate very well regarding 'feelings' and 'coping'. It may just mean women prefer to talk more

I am on top of the medication all the time, I DON'T take CAHMS word for everything. Any differences I notice I am straight back at them and get dosages addressed or ask for alternatives. It is an shame we have to dose our children to feel safe, but I often feel medication is just an easier route these people take because therapy is more expensive. It doesn't appear much of a system (CAMHS), any GP could dish out tablets surely ? We've cut down rispiridone to 1.5 a day now. I am constantly pushing the school and CAMHS for alternatives, some school therapies appear to be better than medication so am expanding those where I can push for it.. In reality my son's communication has increased very favorably since we started to cut down on rispiridone. However his ability to cope outdoors seems to be suffering more now (?) My son will happily eat dried pasta in preference to anything else at present !

My son is developing stretch marks too via weight gain, I am told the rispiridone has an lot to do with it and the weight gain/diet out of control thing too. I've recently asked for rispiridone to be cut back, which they are trialing for an few months. We have to lock food away at present, he will eat anything, dried food, stuff out of the fridge, whatever ! And gone up two sizes in clothes in 3 months. I think I preferred the meltdowns...... he will be obese in 5 years unless the tablets get changed... We have him on an daily excersize regime, and manage his food at school, but once he gets home !! and in shops he will just help himself too... his weight is more an issue now than his meltdowns were. He clearly has no way to stop eating at present.

yes keeping proportion is essential,the school seems to be keeping its head about it, we are making it clear its unacceptable to him. AS far as sex education goes, initially we were advised to give him none, it would only confuse. Now they say To make him aware of sex education I have to consent to them teaching it. The SS were too silly about it so we and the school kicked them into touch, and we both have formally requested SS to be replaced because they don't know what they're doing basically and making parental and school support difficult by their ignorance of autism. It seems an 'shock value' thing at present he is amused by people's reactions. For some reason he only exhibits the behaviour at school and nowhere else. It's not a thing he does at home. Amusingly the school suggested in the playground the kids never talk about sexual matters or swear (I can only assume they are either blind, or deaf !).

My 16yr old has now started to expose himself to teachers and classmates, it has come from nowhere, how do we deal with this ?

More meetings planned ! I must have done at least 9 over the last 3 or 4 months. I dread even the suggestion of residential given the wholesale abuses that appear to be going on with our kids in residential homes, I think I'd rather take care at home than do that, at least he will get care by someone who wants to care for him. The main issue of the abuse cases brought was the fact NO THERAPIES were applied at all and it was all abuse or drugs given. I'm arguing against medication now because it seems to me it is the cheap option to providing real support. They are just upping the dosages lately and an assessment for Occupational Therapy doesn't seem to have suggested anything. I am also getting concern the school isn't managing him too well, yet there is no aggression involved. We're sunk really if the school gives up... and now the DWP has withdrawn his DLA, and his care allowances too, so we are battling them on his behalf as well... it's just a never-ending fight isn't it ?

I've noticed that since my son was put on Citalopram his behaviour has got worse and he is reverting to behaviours that triggered his major meltdown again. I mean to ask for them to be withdrawn. I was told these would help calm him but they have undone the effectiveness of the Risperidone he used and we are approaching square 1 again. I am hoping they aren't using him as a test pilot for their guesses ! It's possible the side effects are making things worse so I called in the nurse tomorrow to grill her on the tablets again.

I don't really think medication is any answer either, It is the 'official' medical view medication will help him cope, and playing to our fear of losing him to be frank. I've voiced objections in that medication in itself is NOT the answer, there has to be in-depth occupational therapy and skilled people working with the child. I certainly feel we are OUT of our depth or approaching it, we cannot be anything but his parents, and engaging an child that doesn't want engagement from anyone 24/7 frustrates and upsets, as well as putting him on an the edges of frustration, which is going to make him worse. I don't want to be his carer I want to continue being his parent. It's settling to a routine that is going nowhere. We cannot go on with our 'life' until we know he has a stab at one for himself. I feel time is pressing now, at age 16.... I think you are very brave to allow the child to be helped elsewhere, I would only do that with guarantees and an system in place I believed would help my child. Although I do have the 'luxury' of not being a target for physical stuff. An assessment is just that, it doesn't then follow therapy etc goes next, we have to fight every inch of the way.... My son diagnosed at 3, but it took 8 YEARS before they gave him special education.... I don't want to spend the next 8 doing the same. He never made that 8 years up.

We are battling too, my son is 16, unfortunately we haven't been offered a thing either, not even inpatient assessment as yet they want to try medication to control. Summer/half-term nothing from SS either we are just left to get on with it, despite both us and the school backing official complaint the Social services are not up to the job, and unable to understand the needs either of the parents or the child. Did you commute to visit your child ? at one point the consultant talked about an assessment 200 miles away ! This would make it virtually impossible for us to commute at all. There is no point on assessments UNLESS an therapy has also been worked out and it is ongoing. To simply 'diagnose' and then put the child back in the home with the parents still at exactly the same point is pointless. We had the same issue with respite, what was the point of it in terms of helping the CHILD ? Just give the parents a break full in the knowledge they are going to get the same again on return, again pointless and stressful. You would just spend respite time worrying about the child's return... and to expect same old. I hope it works out for you and your child, I am crossing everything the medication works, but more doesn't seem tohave made much effect as yet, we don't get violence, against us, but the potential to hurt himself is real...