coolblue

I couldn't agree more. My son has tried endless group activities ranging from after-school sports clubs to sunday school and every time it has been too loud, too fast or someone has picked on him. He's been on autism specific activities that he couldn't tolerate because most of the children appeared to be at the ADHD end of the spectrum and were, as in the MM mentions, much younger. It's been a more pressing issue for him because he is currently home-educated because of problems with school, and one-by-one, activities that he can access outside the home have fallen by the wayside. I've been negotiating for a regular quiet activity session with a local disability group and the short breaks team for the past year, and because of my request a local autism support group managed to set up a one-off session like this in their summer programme. My son was the only kid booked on it, so it was cancelled! I suspect what happens is that parents with hyperactive younger children on the spectrum are the ones pushing for activities (not surprisingly) whereas most of the chess-playing, book reading, lego-building teenagers and pre-teens who would actually prefer to stay in their bedrooms but could benefit from appropriately managed interaction with others, don't even think about going. They've spent all year struggling with it in school and don't want to sacrifice any of their six-week reprieve. So there aren't sufficient numbers to justify an activity. Ironically, that might be just the thing, if there are only a couple of takers. Also, I think there's an element of what's available. It doesn't take much effort to book an extra session in a sports hall and do extra training with the staff, whereas a thorough analysis of local need, plus designing appropriate programmes, plus training and you're talking about a whole new industry. What my son does like, following on from MM's point, is country walks. He's now able to walk reasonable distances, thankfully, so we're aiming to join the local ramblers eventually. cb

There's been quite a lot of research into synapse formation and pruning in typically developing individuals. It looks as if synapse formation starts during the second half of gestation and peaks at about the age of two. So the average two year old has a huge number of synapses. Synapse pruning then starts, and continues through to adulthood, speeding up after puberty. But pruning isn't haphazard. Neurons that fire simultaneously tend to develop stronger connections. Synapses that aren't used get pruned. Gradually, synapses gets pared down to the ones that the individual uses most often - it's basically a process of increasingly fine-tuning. As you say, it is a case of use it or lose it. Except that new synapses are forming all the time in response to new sensory input - which is why we can continue to learn new skills throughout life. What's interesting about the 'overgrowth' in autism, is that although the individual might have too many synapses compared to a typically developing child of the same age, it's not necessarily a case of too many synapses developing, but could be that not enough have been pruned. This might be a physiological issue - the pruning process doesn't work properly - or it might be an input issue - that sensory input (fundamental to all information processing) isn't consistent so there is no clear strengthening of some pathways at the expense of others. What happened with the kittens was that the neural pathways in the visual processing area of the brain connected to the covered eye didn't develop properly. So the visual areas of the brain connected to the good eye developed fine. And the kittens would not have developed 3-D vision because they would have had visual information coming from only one eye. If you look at the scan images in the paper, most of the thicker areas of cortex are in primary sensory areas. There's a huge thickened part (red/yellow in the images) right at the back, where visual information is processed, for example. Whereas most of the thinner parts (blue) are in secondary processing areas - where information from several brain areas is brought together. To me, that suggests that inconsistent sensory input (a lot of autistic people have poor control of eye movement and variable auditory processing) is preventing pruning in primary sensory areas, which would make them thicker, and because of that, secondary areas are thinner because they are not developing normally. I think what will be really informative about this project is what it's going to be able to tell us about commonalities and differences between individuals. cb

Ds dropped off the radar of a couple of services - OTs and SALT. I re-referred him to the SALT service myself, and it turns out he hadn't been formally discharged, so he got a SALT again. Didn't bother with OTs. They had been brilliant. Unable to give him the therapy he needed directly, because of resources, but gave us loads of information and demonstrations of technique, so we were well equipped by them. cb

But you don't need to do an MRI scan to tell you that the fusiform facial area will be smaller in people who have problems with interpreting facial expressions. You know it's going to be smaller. We aren't born with a fully functioning fusiform facial area. It develops in response to information about faces that people acquire after birth. 3% of the population have problems with face recognition. They are going to have small FFAs, but they don't all qualify for a diagnosis of autism. That's my problem with this system. If its parameters are derived from people diagnosed using the DSM criteria, and the DSM criteria encompass people whose characteristics vary widely, their brains will vary widely and the more samples that are included, the fewer commonalities there will be, and the less accurate the diagnostic ability of the system will become. I would attach the same provisos to the ratio of white matter to grey matter. White matter is comprised of myelinated neurones. Myelination is a process that takes place in frequently used neural pathways. That's why it varies so much between individuals. You could predict how much white matter a person's brain had, and where it would be, by analysing their behaviour carefully. Of course there are conditions that interfere with myelination, or demyelinate neurons, but that doesn't appear to be happening in people diagnosed with autism. I have no problem with its potential, very exciting, just grappling with the diagnostic systems used by psychiatry. cb

The problem is that the behavioural boxes are very big ones. The brain of someone with no speech, who doesn't make eye contact at all, and with limited mobility but repetitive motor movements will not look like the brain of someone with a speech impediment, who's a bit socially awkward, and who's obsessed by trains. But they both get a diagnosis of ASD according to the DSM. They probably wouldn't with the MRI. Interesting to see if that happens. cb

I think my major reservation about it is that they are still using the DSM criteria as their basis for diagnosis. In other words, the MRI diagnostic criteria correlate highly with the behavioural diagnostic criteria. But because, as the authors point out in their introduction, ASD as diagnosed behaviourally has multiple 'causes and courses', and they used a small sample of adults, as their sample gets larger, they are likely to find a diminishing correlation with the behavioural criteria, because of the likelihood of coming across sub-groups. Say 80% of people diagnosed with autism have cause A for their autism, 10% have cause B, 5% have cause C and then there are small numbers of people with causes D-G. If the 20 guys in the sample all happened to be in the cause A group, are the people in the other causal groups going to get a diagnosis of autism or not? There were some interesting issues with the classifier putting half the ADHD controls in the ASD group when it was doing the right hemisphere test. Or will the scan be used to look for clusters of specific anomalies that indicate sub-groups? Hope so. That could be a really fruitful line of enquiry. cb

This is what worries me about deciding on educational provision because of a diagnosis rather than because of an assessment of a child's needs. Ds's paediatrician was in no doubt that he was showing autistic characteristics, because he was showing significant abnormalities in social interaction and communication and restricted and repetitive behaviours. But she did a battery of blood tests first to see if there was an identifiable organic cause for his autistic behaviours. There wasn't, so she did the ADI test and gave him a formal diagnosis of ASD. Just because a child has a known genetic condition doesn't mean they can't be autistic, and they should get appropriate educational support regardless of the formal diagnosis. cb

You did well not to buy into it, baddad. What has been found is that although there is indeed a genetic blueprint that is sometimes disrupted, brain development before birth is also affected by environmental factors - the mother's diet, and alcohol and nicotine intake are ones that spring immediately to mind. After about 24 weeks gestation, the fetus can process sensory information, which could also affect brain structure. The neurons in the brain continue to develop after birth and the number of synapses (connections) in the brain peaks in the second year of life. Then a period of pruning of synapses starts that continues through to adulthood. Basically, connections that aren't used die off. Depends what you mean by 'autism'. Technically, 'autism' is a set of behavioural characteristics. It isn't what causes those characteristics, because in most cases we don't know what causes them. Children with Fragile X syndrome show 'autism', but it's not because they have a separate condition called autism as well as problems as a result of having a fragile X chromosome. Having a fragile X chromosome is what leads to the autistic characteristics. In the introduction to the MRI diagnosis paper, the authors point out that ASD has 'multiple causes and courses'. Actually the opposite is probably the case, because in young children diagnosed with autism, there has been found to be less pruning of synapses than in typically developing children. This is often described as 'neuronal overgrowth'. You could probably reliably identify children with autism by looking at the degree of overgrowth, although this might be difficult to pick up accurately on a brain scan. If you could get the child into the scanner to start with. I'm not sure what 'mechanism' you are referring to that might be missing or corrupt in autism. In the scan images in the MRI paper, a whole range of brain areas are affected in different ways - some areas of cortex are thicker than normal, others thinner. The authors of the paper believe that this shows a pervasive problem with the way the cells in the cortex develop, and that this abnormal development then produces pervasive behavioural problems. That's a reasonable conclusion. I suspect, however, that because the thicker areas tend to be primary sensory processing areas and the thinner areas 'higher' processing areas, that the problem lies with unstable sensory processing. It's what you'd expect to see if sensory input was variable. cb

That is a very good question. There are basically two types of theories about abnormal brain development and behaviour. One is that abnormal brain tissue (due to damage or development) causes abnormal behaviours. The other says that the human brain is very plastic, and the brains of babies and young children are very plastic indeed. Children's brains change significantly in the first three years after conception, so sensory input, the child's environment, and their own behaviour can all change the structure of the child's brain. So, abnormalities in an adult's brain could be the result of genetic factors, experience, and an unusual pattern of behaviour. Obviously, if a group of adults diagnosed with autism all show similar brain abnormalities, then you have a useful diagnostic tool - for adults. But things could be trickier when it comes to children. One of the reasons practitioners are often reluctant to diagnose children who might be autistic - by their behaviour - is that developmental delays are not uncommon, and a false positive diagnosis could cause as many problems as a false negative. If children's behaviour is not clearly autistic, then it's likely that their brain might not look clearly autistic either. I'd be surprised if the scan has a 90% reliability rate in children. Another factor to take into account is that autistic characteristics could have different causes. A range of brain abnormalities have been found in the brains of people diagnosed with autism, so it's quite likely there are going to be sub-groups. Could be tough if you happen to be in a sub-group that hasn't been identified yet, and you're told you can't have autism because you don't match the stereotype. cb

Interesting attitude to public money - not knowing how much they are spending on what. Or thinking that nothing costs anything if you use in-house staff. Have you tried your local councillor? Or the portfolio holder for education? cb

Why are social services pressuring you into having an assessment for autism if they think your son might have problems other than autism? That seems very strange. If I were in your shoes I would get some things in writing; why they think he might not be autistic, why they want him to have an ADOS test in particular, what else they think might be an issue, why they are not assessing for other things, why they are not asking about the number of exclusions...... and push ahead with that other school. cb

Asperger syndrome is a medical condition, which means that school auxilliaries are not qualified to diagnose it. Or undiagnose it. Their job is to meet his educational need. Whether or not he has a medical condition, if they have problems with his behaviour, they *should* be able to identify the triggers, and should have a repertoire of strategies to help him overcome whatever obstacles are in the way of his learning. cb

Well, it's a minority interest until SATs and GCSE results plateau and refuse to budge, and then the government discovers mainstream teachers generally have no SEN training. cb

It's what I call 'constructive exclusion' - the school doesn't actively exclude the child, but makes it pretty clear that s/he isn't wanted. When ds ran into problems at his last (junior) school, I went through the websites of all local mainstream secondary schools - and some not so local, to try to find one which was likely to meet his needs, so that we had a goal to aim for. Even the school that the LA says has a good reputation for SEN support talked about SEN in tones that wouldn't have been out of place discussing teenage pregnancy. The forthcoming green paper is going to have its work cut out getting the system fit for purpose. cb

I think they want to look at whether those factors might be associated with autism. Basically to tease out the factors that might be involved in having a higher socioeconomic status. Being older parents, of higher intelligence, or cleaner etc isn't likely to cause autism, surely. cb

Keep a diary for a week, noting down what you and he are doing, anything else that happens, what your son eats and how he behaves. At the end of the week, get someone else to look through it to see if they can see any triggers to his outbursts. Also, if you can, get and read a copy of "The Explosive Child: A New Approach for Understanding And Parenting Easily Frustrated, Chronically Inflexible Children"- Ross W. Greene I would bet good money that this is a physiological, rather than psychological problem, so I would look very carefully at his diet. Children can develop problems with foods, or their metabolism can change. It might not be anything very unusual. Our son calmed down a great deal when we reduced his carbohydrate intake and increased his proteins, and made sure he had something to eat every three hours during the day. This avoids him getting low blood sugar. Hope this helps cb

Hi roady There does seem to be some variation in whether parental consent is sought before consulting an Ed Psych. I've been told that this is because Ed Psychs are usually employed by the education service, so are often seen as 'in house', if you like. My guess is that the referral to the autism service was made without your awareness for the same reasons. I must add, from my own experience, that even if you had seen both of these people before they had assessed your son, it might have made little difference. They are under no obligation to assess what the parent (or the school for that matter) wants them to assess. If the school applied for the statutory assessment, the SEN code of practice says that schools 'should' inform parents. Ideally, you should automatically get a copy of all assessments, relevant correspondence etc, but in practice this often doesn't happen. Not quite clear what the autism service did. It sounds as if they sent a letter in July backing up the LA's refusal to assess in March. Whether this makes sense or not would depend on when the autism service had seen your son. If they had seen him again before March, there is no reason why they couldn't refer to that assessment in their July letter. Since your boy is starting a new school in September I would be tempted to start the process again from scratch. A statement of special needs is issued in respect of a named school, because it specifies the additional support a child needs in the school they attend - or will be attending. So a child in a large urban primary might not need any extra support from the LA because the school can provide it, whereas a small rural primary might need extra resources to support a child with almost identical needs. Explain as soon as you can to your son's new school what the situation is, ask them what they would like to do in the light of it, give them time to assess him and if they don't think a statutory assessment is necessary and you do, you can apply for one yourself. In any event, I would get hold of a copy of the SEN Code of Practice http://www.teachernet.gov.uk/docbank/index.cfm?id=3724 and read the relevant bits first, so you have a clear idea of who should be doing what and how. Not sure what to advise about the exclusions. It sounds as if the school might have been acting illegally, but there are issues about bringing a complaint against a school a child is no longer attending, and I'm not sure what it would achieve. Just keep an eye on the next school, and make sure they don't use exclusions as a way of 'managing' your child. Hope this helps. cb

Not relevant to Sally's case (yet) but just wanted to point out that the Lamb Inquiry findings were published not long before the general election, and that a green paper on SEN is scheduled for the autumn, which should address Brian Lamb's findings. So changes for the better might still happen. Our LA, which is far from perfect, has nonetheless had significant problems getting schools to put suitable provision in place, and one statementing officer was really excited by the Lamb Report, because she was saying that if it was implemented at last they would have some leverage with schools. cb

Nowhere near such a bad experience as you, but it emerged from a conversation with one professional, that my daughter, who does not have an ASD but had been off school for months, had been suspected of having a 'fabricated illness'. It was one of those comments that just slipped out. At the time, I thought it meant they thought she was pretending to be ill. That was before I read NICE's clinical guidelines "When to suspect child maltreatment" and realised that 'fabricated illness' meant 'Fabricated or Induced Illness' (aka Munchausen's syndrome by proxy) and it was probably me that was under suspicion. Although there was advice in this document to the effect that some behavioural signs might signify autism, rather than abuse, there was no emphasis on ruling out autism first. Similarly, although bullying at school was mentioned, there was no recognition of a school's failure to provide appropriate support as a possible cause for school refusal. My daughter was eventually referred to a paediatrician who had a go at us about dd's school attendance and said he would request blood tests, but had to warn us that he thought they would come back negative, in which case we would be looking at 'psychological factors'. They didn't come back negative. They indicated glandular fever. He cancelled the follow-up appointment without notifying us and we haven't seen him since. The point I'm trying to make (in a rather roundabout way) is that I think some professionals are so jumpy about abuse (probably because they do see more cases than they want to) that they don't eliminate other possibilities first. Which, unless they think the child is at serious risk, they should do. I hope your son does get a diagnosis. If anyone levels accusations at you in future I would recommend asking them for their evidence for doing so. A child's behaviour is not sufficient evidence for assuming parental abuse - all kinds of things can cause behavioural problems. And if you can face it, I would certainly follow up the grounds for your dismissal. cb

Happy to agree to differ. I'm not actually totally confident about my own parenting - I did say that I spent some years expecting my son to 'behave' until I figured out that there might be a reason why he wasn't. Nor do I have any problem with discussing such issues. I thought that's what we were doing. Just because people disagree with you doesn't mean they have 'an awful lot invested in your views being wrong'. Any more than you appear to have 'an awful lot invested in your views being right'. In my case, I am acutely aware that I got it very wrong with my son initially, and wouldn't want other parents to make the same mistake. Why equate disagreement with 'attacking' your post? You made a valid point, but I felt you also made some sweeping - and misleading - generalisations. I assumed that it was OK to point out where I felt you were wrong. cb

That's probably because the parent has in many cases spent the best part of a decade wondering what on earth they did wrong with one of their children. Suddenly the penny drops and it becomes clear that the child in question has a developmental disorder which explains their all-exclusive preoccupation with Thomas the Tank Engine, their extraordinary rages that *no one* knows how to control, and the weird fact that they only ever agree to eat green food, when their siblings have tucked into whatever is put in front of them. Of course autistic people can be overindulged and underdisciplined; but if you can tell where overindulgence and underdiscipline begin and autistic behaviour ends, you should make your services available to the public because there are plenty of parents and teachers out there who would dearly like to know. I was referring to peer-reviewed research. You can describe findings that people diagnosed with autism have abnormal bandwidth filters, longer than normal auditory evoked potentials, abnormal saccades, and visual hyperacuity as 'anecdotal' if you like, but you will then have to question the reliability of most research in medicine and technology, since it uses the same type of methodologies. But what's your opinion based on? It's a serious question. If you consider my opinion - that many sensory sensitivities are overlooked in autistic people, and cause needless problems - to be based on anecdotal evidence, presumably your opinion is based on anecdotal evidence too. In which case, what makes you right and me wrong? The reason I'm concerned about this is because I spent years expecting my son to 'behave' like other children and he just didn't. I gradually worked out that he had sensory problems; it was only later that he was diagnosed with autism. We've made allowances for his sensory 'issues' and have few problems with his behaviour. I think it's significant that specialist schools for autistic children have adopted the same strategy, with considerably more success than schools that see the problems as a matter for discipline. cb

'The assumptions surrounding autism are invariably extreme'. This statement is patently untrue and quite unhelpful. One only has to look at the variety of assumptions made by people on this forum. They vary considerably. The fact that many assumptions are made on word of mouth but on little hard evidence does not mean that hard evidence does not exist. In the OP's case, the features of K's behaviour were almost identical to those exhibited by my son. To suggest that they might be caused by sensory problems is indeed an assumption, in the same way that any comment on someone one has never met is an assumption, but then I am very grateful to parents who have made similar assumptions about my son and said ' you could read this' or 'what we did was...' It's also an assumption based on a substantial body of evidence. The evidence suggests that sensory processing is not consistent either between individuals, nor within individuals across time. That's because it's a complex set of processes, therefore lots of factors can contribute to its variation and it's subject to physiological fluctuation, due to changes in diet, sleep, activity level etc. Sensory processing also varies in so-called NT people (although I have yet to come across a watertight definition of what constitutes neurotypicality - as far as I can see, there's a lot of sensory variation across the whole population), so it's not safe to assume that someone without a diagnosis of autism doesn't have sensory issues. How people respond in relation to 'rewards' is also quite complex. It's widely misunderstood. Especially in schools and by government where it is often assumed that behaviour can be shaped by a system of rewards and punishments. The fact that this patently doesn't work is studiously ignored. And that's with 'NT' people, not those with autism. People attach different weightings to rewards and punishments, and their response depends on the circumstances. On top of that the evidence suggests that autistic people do not respond 'typically' to reward and punishment. Since autistic people have been found to have variations in the neurotransmitters involved in the reward circuits of the brain, this is unsurprising. I don't think it's safe to assume that just because a child doesn't want to go on an outing, acts up, and so the family goes home, that the child just doesn't want to go and is persisting in acting up because in the past they have got their own way. I have lost count of the number of times I have read of a parent discovering that their autistic child's reluctance to do something stemmed from the fact that their legs hurt if they walked too far, or they felt dizzy but didn't realise they were hungry, or they found noise or the number of moving people overwhelming - but they haven't been able to articulate their discomfort at the time. In other words, they might be interested in getting their own way solely because they were in considerable discomfort if they didn't. A child with tears streaming from his eyes and saying they hurt, or with his hands clapped over his ears screaming 'my ears, my ears!' might indeed be laying it on thick in order to be allowed to go home and play computer games. On the other hand he might be experiencing 'torture'. I for one, would not want to push him too far out of his comfort zone, because whatever the reason he objects to the outing, doing so is is quite likely to make him even more resistant to outings in the future. cb

'The assumptions surrounding autism are invariably extreme'. This statement is patently untrue and quite unhelpful. One only has to look at the variety of assumptions made by people on this forum. They vary considerably. The fact that many assumptions are made on word of mouth but on little hard evidence does not mean that hard evidence does not exist. In the OP's case, the features of K's behaviour were almost identical to those exhibited by my son. To suggest that they might be caused by sensory problems is indeed an assumption, in the same way that any comment on someone one has never met is an assumption, but then I am very grateful to parents who have made similar assumptions about my son and said ' you could read this' or 'what we did was...' It's also an assumption based on a substantial body of evidence. The evidence suggests that sensory processing is not consistent either between individuals, nor within individuals across time. That's because a) it's a complex set of processes, therefore lots of factors can contribute to its variation and it's subject to physiological fluctuation, due to changes in diet, sleep, activity level etc. Sensory processing also varies in so-called NT people (although I have yet to come across a watertight definition of what constitutes neurotypicality - as far as I can see, there's a lot of sensory variation across the whole population), so it's not safe to assume that someone without a diagnosis of autism doesn't have sensory issues. How people respond in relation to 'rewards' is also quite complex. It's widely misunderstood. Especially in schools and by government where it is often assumed that behaviour can be shaped by a system of rewards and punishments. The fact that this patently doesn't work is studiously ignored. And that's with 'NT' people, not those with autism. People attach different weightings to rewards and punishments, and their response depends on the circumstances. On top of that the evidence suggests that autistic people do not respond 'typically' to reward and punishment. Since autistic people have been found to have variations in the neurotransmitters involved in the reward circuits of the brain, this is unsurprising. I don't think it's safe to assume that just because a child doesn't want to go on an outing, acts up, and so the family goes home, that the child a) just doesn't want to go and is persisting in acting up because in the past they have got their own way. I have lost count of the number of times I have read of a parent discovering that their autistic child's reluctance to do something stemmed from the fact that their legs hurt if they walked too far, or they felt dizzy but didn't realise they were hungry, or they found noise or the number of moving people overwhelming - but they haven't been able to articulate their discomfort at the time. In other words, they might be interested in getting their own way solely because they were in considerable discomfort if they didn't. A child with tears streaming from his eyes and saying they hurt, or with his hands clapped over his ears screaming 'my ears, my ears!' might indeed be laying it on thick in order to be allowed to go home and play computer games. On the other hand he might be experiencing 'torture'. I for one, would not want to push him too far out of his comfort zone, because whatever the reason he objects to the outing, doing so is is quite likely to make him even more resistant to outings in the future. cb

Your pictures are beautiful. You don't have to be employed by anyone. A lot of photographers are self-employed. This guy http://www.smilingleafimages.co.uk/vscript...index.asp?S=sli has Asperger Syndrome and I'm sure he would be able to give you advice on your career. cb

Ah. I wasn't clear about the transport. Sorry. cb