LizK

The problem with the MMR-autism issue is the way it has been misreported and hyped in the media that you can barely see the wood from the trees and makes it hard to make a logical decision. You only have see the woefully irresponsible scaremongering headlines about swine flu in the press this week to get a flavour of this. Once you brush away the hype there are really only two things that are evident. Firstly from actually looking at the science there is little meaningful evidence or good quality research linking MMR and ASD and afaik no epidemiological evidence of ASD rates falling with the decline of MMR. Secondly though there are anecdotal cases reported by parents of ASD symptoms developing shortly after the MMR. How do you marry these two up? The large scale general conclusions to apply to a populatiom vs what might happen to an individual. If you are the 1 in 10000 child who has a severe reaction to a vaccine (as quoted by manufacturers) and ends up developing autism or other neurological impairment as a result then you don't really care what an epidemiological study states. If you are one of the 9999 children who don't react then protecting against the real harms of measles etc is important. I am quite angry with the media hype and biased info on both sides as it made it very hard to make an informed decision about MMR. And even though I logically could find no credible evidence linking the two the fear generated by the media was a bigger influence than rationale science. It is only know when DS is 7 years old that I can finally bring myself to arrange his MMR booster after procrastinating for three years and I still feel quite wobbly about it all. http://www.badscience.net/2008/08/the-medias-mmr-hoax/ This article is quite interesting Going slightly off at a tangent but read some interesting research looking at home videos taken of autistic children when they were babies. Even though the parents often reported the symptoms of ASD developing around 12-18mths (MMR time) there was actually signs on the videos of autism in the children when they were much younger i.e. the autism was already there Lx

Will he write on on a computer? As well as physical aspects of writing he may have problems sequencing his thoughts or retaining them in his head in a coherant form to get them down on paper. Is he reluctant to do any sort of writing or is it a problem more with creative writing? Is he distracted by the sensory environment around him? Is it behavioural and that he simply doesn't see the point of writing. He sounds a bit like my son in getting dressed. He can do it but needs you to stand over him and chivvy and cajole him. Otherwise he will put on half an item of clothing and then drift off and forget the rest! It's hard work. Using simple and immediate rewards does help though - a bit! Lx

Yes that is exactly right. If there were obvious child protection issues then they can breach confidentiality or become more directly involved. They have plenty of cases where a child's mental health is adversely affected by outside influences be it bullying, warring parents, school issues, dysfunctional families, social circumstances but CAMHS can only really treat the child itself, they cannot deal with the underlying cause for ethical, legal, financial, logistical or practical reasons. They can advise the parent how to ameliorate the cause but cannot really get that involved directly. If they do it has to be handled very sensitively. Also worth remembering that CAMHS is Health, school is Education and both have different remits. Education often don't listen to health and vice versa In my experience if you want school to do something getting an opinion from someone else from Education like an Autism Outreach teacher or possibly EP is listened to a bit more than that of a completely outside professional Lx

My son had the cord wrapped around his neck tightly at birth. There is a link between difficult birth, cord around neck and ASD or related conditions. Not sure why yet. Is it the final physical insult in a genetically susceptible child so the difficult birth and mild lack of oxygen from cord around neck knocks off a few more brain cells to trigger autism? Or is it the other way round that the difficutl birth is a result of the autism not the cause, that the baby because of its autism doesn't 'know' how to be born so ends up in the wrong position or gets distressed. I certainly noticed a difference when pg with both my sons - DS1 (ASD) very erratic movements from manic to nothing, tranvserse lie until 36 weeks then as soon as engaged went into labour at 37 weeks, waters went early, cord around neck, ventouse delivery. DS2 (NT) had regular movements, head down from 32 weeks, born at 40+ weeks, quick intervention free delivery. I'm sure DS1 wasn't quite right from being a foetus though whether his birth contributed to his autism who knows Lx

Thanks everyone. I think Chris has hit the nail on the head that it should take as long as it needs to and we just feel that given the restrictions upon the timing of the meeting *should* it need to be longer then it won't happen. It's not going to be changed though so will have to try to ensure the most is made of the time. Lx

Interesting because the last two annual reviews have not really looked at the content of the statement at all and more been a discussion about how DS is 'getting on'. It is because of this that the wording of his statement is three years out of date. Though maybe in a special school it is easier if professionals are on site more often (is that how it works LOL!) The professionals involved with DS don't meet to discuss him aside from this meeting so tends to get sidetracked. Also as it falls at the end of the year planning about next year inevitably gets discussed. Maybe we should push for them to discuss the statement first and if other issues are raised to reschedule a separate meeting Thanks Lx

CBT can be less effective on children with asd because of the theory of mind issues. If a child is particularly concrete or rigid CBT will be hard wrok especially the cognitive aspect. The behavioural aspect may be more successful. Depends on the individual child though and how much they struggle with theory of mind. Lx

DS has some of these difficulties though not to the same degree. Your example above of 'cat' - picking it out visually but not able to write it - sounds familiar. DS has difficulties with phonological awareness which is responsible for many of his reading and spelling difficulties. He simply cannot hear the sounds in words, struggles to blend phonically, did not get the concept of rhyming. From what I understand it is related to auditory processing and causes language difficulties as well? Presumably is aprt of being dyslexic. DS is a strong visual learner so has learned to read by sight. Could read a word like Beethoven' but not the word 'was' Apparently a child needs to have phonological awareness before they can move onto phonics but school had not realised he struggled with PA so it was no wonder that he couldn't do phonics. DS's PA difficulties wer picked up by the SALT who put a programme in place. At the same time he started Direct Phonics at school, I think he might also be doing Precision Teaching as well and a few months later his reading has come on in leaps and bounds. Spelling is still very hit and miss though I've been told this takes longer. We use coloured overlays, twas very sceptical but couldn't believe the difference it made. I probably should get him assessed for lenses really. Interested in your replies regarding writing. This is still a massive issue. His letter formation is poor, he has some coord problems and coupled with his difficulties in spelling and with sequencing as well as his complete disinterest writing is not his thing. He is allowed to use the laptop at school sometimes as he finds this easier and is something that may be encouraged more as he gets older as we think he will need to use a laptop at secondary school. Lx

No sorry, what I meant is that is what the school chooses to do prefering to hold the meetings during school hours. It is a regular supply teacher who covers for PPA time so not someone unfamiliiar with the class. Lx

I hate this time of the year, seem to have to go into battle with the various agencies involved with DS in preparation for his annual review. I want to ask a question about differentiated curriculums in mainstream. In brief DS1 is in year 2 at mainstream with fulltime 1-2-1 support. His LSA is fantastic. His reception and year 1 teacher was also the SENCO and he did very well with her. This year he has just had a 'normal' teacher. DS probably superficially comes over as a child with mild learning difficulties but in effect he has that typical autistic spiky profile, great at maths, ICT, has struggled somewhat with reading though catching up well, writing and spelling a real issue and anything at all creative or imaginary is over his head. The school curriculum is increasingly kinaesthetic, creative and imaginary based, experiential and self directed learning which doesn't really suit my fairly concrete little boy We have been concerned for sometime that there are aspects fo the curriculum that are completely bypassing him. They have done about castles and he has picked up b*gger all, done about Robin Hood and medievel times again over his head. I have not been sure whether this has been due to him lacking the cognitive ability to understand or whether the information has needing presenting in a different way. He has been observed by two different professionals recently both of whom have commented that the way the curriculum is being delivered (auditory, imaginary) is playing to all his weakness and he is missing large chunks as a result. They felt he had the ability to learn if it was presented in a more ASD-appropriate way. Since found out this has been mentioned to school earlier this year but apparently seems to have not been acted upon. I feel quite annoyed now about how much he is not able to access because of this. and how much he will struggle once he moves up to year 3. I don't think he has his own differentiated curriculum yet my SIL who is a SENCO herself said that in her opinion the teacher should be doing a differentiated curriculum for Adam when she plans the lessons and that this is fairly standard practice. We feel that DS will need more individual or small group teaching too rather than whole class teaching where he is distracted by the sensory environment or cannot the process the information given. Might be going back 15 years in terms of teaching practice but a more didactic rote way of teaching would suit him better. DS is part of a small phonics group where his reading has come on in leaps and bounds so we've seen the success of focused work. I think school are going to be resistant to this though. His current teacher says he is keeping up when clearly he is not. It is very frustrating. Lx

DSs prev annual reviews have always been an hour long. The last two have not been long enough. They are held in the last hour of the school day so once the hour is up it is hometime with DH or I have to get the children, LSA has to leave to collect hers and the other teachers are bursting into the staffroom where it is held to make cups of tea. DH and I felt that the issues we wanted to discuss last time were not really deal with because we ran out of time. DSs annual review is now approaching. He is in year 2 so the jump to juniors next year will be a bigger transition for him. The wording of his statement has not been updated since he started school 3 years ago. I understand that going through the statement wording is part of the Annual review process but it has never happened. In view of all this DH and I have requested that the annual review start earlier so there is more time available if needed. The Head teacher has refused saying they cannot spare the staff any longer out of the classroom which I take it as meaning they don't want to pay for supply teachers to cover the classes for longer than an hour. DH and I are not impressed. The school has very few statemented pupils so it's hardly like they are doing reviews every two minutes and we feel that the allotted hour is not sufficient. His AO teacher agrees though the EP apparently thinks that an hour is sufficient and we should count ourselves lucky as we already had an informal meeting about DSs progress half way through the school year. Are we being unreasonable in asking for a longer meeting? How long does your child's annual review meetings last? Thanks Liz x

If you get a more appropriate school placement he may end up not needing medication. Surely that is the better outcome Good luck Lx

What sort of medication are you considering? I think you have to ask who is the medication for. If it will benefit your son directly then I would strongly consider it especially if it will help improve his quality of life, happiness or ability to learn. If it is to make life easier for school then I would be much more reluctant. You could always trial it for a couple of weeks and see what difference it made. Lx

Lactose is milk sugar, casein is milk protein. You can be intolerant to either (wind, bloating, diarrhoea, weight loss) and in fact a lot of time esp in children it is actually a milk protein not milk sugar intolerance. As you get older though the amount of the enzyme that digests lactose in your bowel decreases (because humans are not designed to have as much milk as they have beyond childhood) so you can acquire a lactose intolerance. Some ethnic groups are more predisposed to that. On top of this you can have a true milk allergy where you get a full blown allergic reaction to milk products - rash, swollen lips, difficulty breathing etc. In autism as far as the leaky gut Sunderland theory goes it is milk protein (casein) that is supposed to be one of the culprits Lx

LOL! Can you tell we've had OT appointment this week Errr........... knowing where parts of your body are in relation to each other; movement Lx

Was a bit down hearted after school pick up this evening. DS1 has been having some 'strops' at lunchtime so his LSA devised a sticker reward chart earning two each lunchtime, one for something he mostly can do one with ease to encourage and one for the behaviour they are trying to change. Reward tomorrow if he gets all 10 stars is extra computer time something he really loves and looking forward to. He played up at lunchtime today so didn't get his second star and now knows he won't get extra computer time at school until after the Easter hols. I was quite perturbed that he was unperturbed at this turn of events He told me all about the things he did wrong on the way home very matter of fact, you would think he was almost proud the way he sounded except I know that's just how it came over and he was simply recalling the lunchtime with an 'oh well I'll have to wait until after Easter for extra computer time' with an over exaggerated sigh. He is just so flipping flaky and laid back at times but he adores the PC. I don't understand him sometimes and worry that parenting him 'negatively' whilst effective now is really not something I want to make a habit off further. Thanks for the comments and ideas Agree with Baddad about the consistency thing, I feel the pressure far more to be a good parent and get things right with DS1 than DS2 because I know I can slip up occasionally with him and not screw things up. Might try the tokens, it's a tangible and visible motivator, we've used very visual reward charts before with reasonable success. Maybe it's just time and plugging away at it. Making more of an effort to postively encourage him to do small helpful things and praise him and explain that is a good thing to do. Sometimes just thinks he needs a rule book of right and wrong explaining it explicitly 'cos he still doesn't always realise when an action he does is either one of these Lx

How much of the effect is sensory I wonder? The proprioceptive and vestibular input from physically riding a horse, the deep pressure all must be calming. Interesting how in the article quoted the father used to take him out to the fields when he had 'neurological firestorms' to presumably reduced sensory input and overload. The environment for the trek in Mongolia may have been similar. The Shaman rituals, rhythmic noises, dancing, movement, touch, outdoors etc may also have reduced sensory overload, fed the senses that were undersensitive and helped this child's developing brain to make new neurological connections. Of course there is part of me that is sceptical and puts it down to coincidence and change in parental perceptions. There have been numerous times when DS has made a big developmental leap and if we'd embarked upon a trip or were undertaking some new fangled diet or intervention would no doubt have hung our hat on that and attributed the improvement to it. However some of marked changes in DS have not coincided with anything new, just happened because it did and I wonder if simply that is how the autistic brain works Lx

DS would if he chose spend large amounts of his time on the PC or Wii or in front of the TV. We get times when he just wants to gravitate from screen to screen like an addict. He loves computers and the like, is good on them and one of the few things he can focus on for any length of time. He struggles to play on his own and will spend the rest of his time superglued to me. Screens are my respite too I guess! However I had always been conscious that too much time in front of screens is 'not a good thing' and try to ration him. That can be fun and games especially when he hasn't got the concentration to play unsupported with his other toys. Aside from concerns that TV and screens may be rotting his brain and also how can I complain if he has delayed language or social skills if he spends his time in front of a screen screens really affect his behaviour. Particularly the Wii or computer games. If he is on them for more than 40 minutes he slowly becomes hyperaroused, aggressive and emotionally impulsive or locked away. This can last for a couple of hours after he has been removed from the screen. His concentration afterwards is particularly poor and if it is too close to bedtime stops him sleeping. DS2 (NT) is less into screens but if he does go on them they don't affect his behaviour afterwards half so much. I do feel a bit mean limiting DS1's time on something he enjoys so much but I feel quite strongly too much time simply is not good for him either. We have had to have quite strict rules now around how much access DS can have to the Wii and PC. He is allowed 40 mins Wii time when he comes home from school and 30-40mins PC time. Some days he will watch TV for 20 mins. Weekends are much more variable as I simply cannot regiment my life and preplan to the same degree though it is probably more TV time (a lot more sometimes!) that he has. Is that a lot? Typing it out it sounds a lot. It's always somewhat of a battle getting DS off a screen though with prewarning, use of clock or timers and becoming routine it is easier. On the odd occasion he even comes off now unprompted ! Some days though, those sorts of day when life is a bit more difficult, DS is stressed or cannot concentrate or I am tired letting DS1 have free access to screens is the tempting option, sometimes just cannot face the constant battle and crave peace and quiet. But those days are the ones when I really should stick to the rules rigidly as those are the days when too much screens does equal meltdown. So is your child affected by how long they spend on screens? How does it affect them? Do you think too much access to screens can adversely affect their concentration or ability to socialise etc. If your child is affected by screens do they have a comorbid diagnosis of ADHD? DS probably does and have read these children are more sensitive to screens etc. How much time do you allow your child to have access to screens? How do you enforce it? What are your rules? Does it get worse as they get older ? Not sure I want to know the answer to that one LOL! Thanks Liz x

I would buy it. You need to buy toys appropriate to her interests and needs not dictated upon what society deems suitable. A spinning top might also help fulfill a sensory need in her or maybe something you can use at home to calm or chill her out. My DS aged 7 has a variety of toys deigned for younger children or for girls. One of his favourites is Polly Pocket LOL! If I bought gender specific age appropriate toys he simply would not be interested Hawkins Bazaar had an perpetual motion spinning top at Christmas, battery powered with lights that just keeps going. Makes me feel sea-sick LOL but DS loves it! If you feel she might get too obsessed and insular with a spinning top then ration it for a certain length of time or use it as a reward. DS gets overly obsessed with the PC which affects his behaviour so we have to have strict rules now about how long he can go on it for. It's very hard sometimes getting that balance of going with their interests and not letting them be too consuming that it affects them adversely Lx

Anyone know what the legal and practical situations are regarding extra curricular activities held after school on school premises? DS1 is starting to show an interest in after school clubs. He has a fulltime 32.5 hour statement and dedicated LSA at mainstream. There is no realistic way he could manage an hour after school club on his own. He doesn't need much support but does need someone there to prompt him etc. Also he is very clingy and would refuse to stay on his own without someone he perceives to be looking after him. He has done a multi-sports after school club this term which is great for his physical issues and wants to do dance next term. This term either my DH or I have stayed with him for the duration of the after school club. This also entails my four year old having to sit and watch and after 15 mins he's unsurprisingly bored silly. DS1 gets extremely anxious if I go out of the hall to let DS2 run around outside and it's getting worse each week, last week he was screaming and in floods of tears at the idea of me going outside for 10 minutes! I also noticed some of the other children were picking on DS1 and teasing him so he really does need someone within eye shot keeping a watch on the situation Working on DS1 independence skills is an ongoing task but that's not really the point of the post. Realistically we cannot continue to be the ones supervising DS1 in after school clubs, not fair on DS2 and there are changes afoot which will soon make it impossible anyway. DS1 does need someone there though for him for the reasons mentioned above otherwise he really cannot attend after school activites. I have spoken to the SENCO who was sympathetic but said school would not pay anyone. She is looking at voluntary organisations to see if they can help I am wondering what the legal situation is with regards to inclusion and disability discrimination? The after school clubs are run by outside agencies, is it actually their responsibility? If a school was run by the school itself would they be obliged to make sure DS1 could be included at their cost? How have others dealt with this situation? Any suggestions welcome Lx

I was dairy free when breastfeeding my youngest child for a year. I detest soya milk and related products with a vengence! I used rice milk in general cooking, tastes quite sweet and lovely on cereal. Tolerable in coffee, drank tea black with lemon. I make the boys puddings with rice milk just use less milk than the recipe and it works well. I discovered a brand of oat milk in small cartons at health food shops and some big supermarkets which was advertised as a cream substitute and this works well in place of single cream or normal milk if you want a creamier pudding. Used pure sunflower margarine which was the best tasting non dairy marg I could find. Never found anything palatable to replace yogurts. My boys used to have Rice and Rice desserts that were rice milk based, not easy to find but available on line and in big health food shops. Never looked that appetising but they ate them! Lx

Another thought is is he going to sleep early enough? Agree with Westie about limiting access to Pc, games machines or other screens before bedtime that might over stimulate him. Does he have problems getting off so sleeping in later to compensate? Would something like melatonin at bedtime help him if this is the case? I'm not saying for one minute from what you've written that this is the answer to your problem. However trying to tackle the issue will be that much harder if he is going to bed too late or genuinely isn't getting enough sleep so might be worth rectifying that first if necessary then dealing with the mornings Lx

Dunno if I am expecting too much of my seven year old. He is generally a placid little chap but we are noticing that he has become a bit more oppositional recently. I generally can get him to behave when he is like this but it is usually down to me having to count down and threaten a sanction or end up shouting at him. Negative parenting really and because this works I get into a cycle of doing this more but that's not really how I should be parenting? My four year old NT son is more of a handful than my 7 year old but I have noticed now that he's starting to do things I ask because he wants to and responds to praise. They were in the back of the car today arguing over a toy so I insisted they took turns with and gave them prewarned set times with it. Each time DS2 finished his turn he handed it over with little prompting, DS1 refused and only did it because I threatened he couldn't have it again. The problem with DS1 is that whilst he likes praise he is not that motivated by it certainly not when it means distracting him from his agenda. He is not bribable like DS1 either so flipping flaky that if he doesn't get his reward he just shrugs his shoulders and wanders off. I think a lot of the problem is that it is so hard to motivate DS1 positively whereas threats and sanctions work. I just don't like the fact that my main method of parenting is so negative with DS1, I want him to do things because he knows it's right just like I'm starting to see the signs of in DS2. Or am I being unrealistic? DS1 is developmentally immature, maybe this will come with time (it is a stage of moral development I think?) or maybe by virtue of being autistic DS1 will find it harder to achieve this? Any thoughts? Lx

I am presuming this is regarding your 12 year old with severe anxiety from your signature. I think it is very easy for professionals it give out advice, much harder for the parents living with it day in day out to actually carry it out and deal with the consequences <'> . I think though that comes along with our role as parents sadly. I think the CAMHS advice is exactly right though, for anyone with anxiety or mood disorders structure and routine to their day is vitally important to their mental health, throw in a dash of autism and it is even more so. I suspect your son is behaving like he does to exert control and to narrow down his options. I see my son who is an anxious little boy doing this and it is very hard to fight against it even though I know narrowing down his options is ultimately detrimental to him. Keep at it even if it's hard. Make sure he's going to bed at a reasonable time, make sure he is forewarned what time he will be woken up at and negotiate that with him if giving him some control in this helps. Use positive and negative sanctions as mentioned in other posts. You may well find that things do get worse initially, his status quo has been changed, you are forcing him out of his comfort zone, he's bound to react but stick with it. One thing I would say is do it know whilst he's this age, when the things that you do can really make a difference and help him in the long term. In a couple more years behaviours become that much more ingrained and difficult to change, he is physically bigger, puberty has well and truly kicked it and it is so much harder then to make a difference Take care and good luck Lx

The main thing that strikes me about this is that it is reported in The Daily Mail which has its own peculiar autism agenda and is not known for its accurate reporting of anything vaguely health related. See this article about how the press twisted SBCs testosterone research http://www.newscientist.com/article/mg2012...ism.html?page=2 Until I see the actual paper I will not believe that statistic. The figure 1 in 50 was leaked a while ago to the press with similar headlines but an article in a reputable medical journal involving the actual researchers in the study made it clear that that figure may have been leaked for another agenda (Wakefields case at GMC at the time) and was just one value the study group had come up with, depending which measure they use and the incidenec varied from 1 in 50 to 1 in 200. Of course the press weren't interested in the 1 in 200 figure. The 1 in 60 figure may well be accurate but I won't to seee proper scientific evidence not the opinion of that peer reviewed scientific journal the Daily Mail that still doens't understand the difference betweeen a virus and a bacteria I can well believe that the incidence is that high for a variety of reasons - better diagnosis, increased awareness, increased opportunities for genes for autistic tendencies in parents to collide, possible environmental issues. It does worry me though that it will be seen as a dustbin diagnosis and used as an excuse for poor parenting, attachment issues, behavioural problems or simply natural variation in personality. Incorrect diagnosis does a great disservice to those who are genuinely diagnosed with the condition Lx