coolblue

The Autism Genome Consortium has mapped the genes associated with autistic spectrum disorders. Their findings were published in Nature Genetics 39, 319 - 328 (01 Mar 2007), doi: 10.1038/ng1985 Apologies for not posting a link, but it was ridiculously long. You can find a summary by going to http://www.nature.com/ng/index.html and searching for autism genome project in 'this journal'. They found a lot of genes implicated (around 20). This does not mean that 'autism' is caused by abnormalities in 20 genes. It means that autism is a heterogenous condition - it's an umbrella term for a set of symptoms that can be caused by a bunch of different causes (different in different people). The genetic findings have finally convinced (most) researchers that they are not looking for one gene or even one group of genes. As other posters have said, this makes 'autism' very difficult to diagnose. If it's difficult to diagnose then it's going to be difficult to identify which groups of people have similar genetic patterns. I can't see this happening in 5 years. 90% of the 'problems' caused by autistic symptoms stem from the lack of awareness in neurotypical people (it would be interesting to map neurotypicality!) and because the specific features of autistic symptoms are not being addressed sufficiently in the research. Most researchers are after the holy grail of finding 'the cause' for autism.

Heard the SBC clip on PM too. Interested to hear him say that he wants to have the debate now, rather than leave it until we're all in a moral panic. (Well, he didn't say that, but we know what he means). What mystifies me is that he doesn't seem to have got his head round the fact that 'autism' - that is autistic symptoms - can be caused by lots of different things. Quite possibly a random interaction between several genes. So quite how he thinks we're going to get a pre-natal testing in five years I don't know. The whole business sounds like moral fascism to me. A group of people who have power decide what is normal and anyone who isn't 'normal' is therefore expendable. Where have we heard this before?

The NUS have a disability officer, Adam Hyland, according to resource.nusonline.co.uk/media/resource/social_model_briefing.pdf (his email address is at the bottom of the second page.) I'm surprised your own Student's Union don't have a disability officer - they are more than likely to be affiliated to the NUS so the NUS might be able to help.

BBC news is carrying a report on possible pre-natal screening for autism. Simon Baron-Cohen has sounded a cautionary note. Your comments are invited. http://news.bbc.co.uk/1/hi/health/7736196.stm

There's a registration category which is something like 'being educated off the school site', sometimes used for flexi-schooled children ( in part-time attendance for some reason, like health or behaviour problems). I wouldn't just not send him in without an explanation. If your Education Officer is friendly, it might be worth asking advice. Call me cynical, but I suspect the main reason LAs are so hot on attendance issues is because they have targets to meet, not because they are worried about a child's education as such. If the LA have a box ticked, they may well be happy.

I've been astounded at the number of pieces of mail that have gone astray that we have hand delivered to various organisations, hedders. Nothing surprises me nowadays! Not sure what the private tuition has to do with the situation?

Very common Mumble. If you have perfectionist tendencies your work is actually never done, so you have to set time limits. One of the most useful pieces of advice I was given as a student, was to timetable in a) a set period of catch-up time once a week, to finish off things I hadn't finished and leisure activities. This means you put yourself under pressure to get work done in the time you've allotted, and it doesn't go on and on and on until, as you say, you burn out. Producing what's required and no more is a craft skill which has to be learned - Howard Gardner mentions it in his Multiple Intelligences book - which comes in very useful in the workplace where obviously, no one has endless time to get things done.

There's still a big gulf between Education and Health. My son's main difficulties have been in education (speech, reading, spelling, handwriting, arithmetic) but those difficulties have been because he has visual and auditory deficits which weren't picked up in standard sight and hearing tests. I only became aware of them through talking to other parents, so we had them checked out (OT, specialist optometrist, many re-referrals to SALT until we got someone who would address his speech rather than his comprehension, which is fine). We're currently trying to get him assessed by an orthoptist and audiologist at our local hospital but I'm not impressed, so far! One of the stumbling blocks seems to be that his auditory and visual difficulties are minor compared to the other cases the orthoptist an audiologist see, so they don't treat them as a serious problem, but in school they are a major problem. Could you get the school to write a letter to accompany the IEP to spell out exactly how your daughter's difficulties are impacting on her school work? I'd get involved with as many support groups as you can manage. Have you tried Parent Partnership? They can vary between useless and brilliant, but will be able to give you factual information about SEN processes in school, your family's rights, local support organisations etc. I'd also try local ASD groups. You can get an awful lot of information from other parents - good practioners you weren't aware of, other schools, ways round the blockages in the system, how other parents have handled the same paediatrician...

The word you want is 'synaesthesia'.

Check out Jamie Ward's work at Sussex http://www.syn.sussex.ac.uk/

Resurrecting an old thread, but just wanted to add our experiences with casein. A professional who'd been assessing ds (nothing to do with diet) asked if I'd ever tried him on a lactose-free diet. I said I hadn't because I'd been told that findings regarding diet and ASD were inconclusive. He said lactose might be worth looking into. I did. Ds didn't have symptoms of lactose intolerance, but did have symptoms of casein intolerance. This posed a problem, because his main source of protein is dairy products. I didn't want to switch to soya because some people are sensitive to tryptophan. I'd heard good reports about goat's milk (slightly lower casein), so we tried a straight substitution. I'm a sceptic when it comes to magic bullets, so I was stunned to see that within a couple of weeks ds had colour in his cheeks, no dark rings under his eyes, and his energy levels had shot up. I couldn't understand it, because the amount of casein in goat's milk isn't that much less than in cows' milk - I wouldn't have expected such a marked change. It was only when I was trying to find out how casein is converted into casomorphin, the chemical that's supposed to make susceptible people sluggish, that I discovered that there are many different types of casein, that the type of casein in the milk depends on the animals' diet, and that many people are sensitive to certain types of casomorphin molecule. So children may not be sensitive to dairy, as such, or even casein, as such, but to certain types of casein in some milk but not others. This started to make sense in terms of immune reactions to dairy products (asthma and sniffles) which could be triggered by molecules of particular shapes. We haven't even started on the gluten yet

Just wanted to come back on the dopamine issue, since I introduced it . Teachermum said a rewards/sanctions system worked for her son; I said that sanctions don't seem to have worked at all for mine and mentioned the dopamine system as a possible cause of this. Dopamine keeps coming up in research in reference to reinforcement, in reference to sleep, in reference to the effects of light, and in reference to mood (via serotonin), all of which are often relevant to people diagnosed with ASD and I thought it might be a point worth noting. Sometimes a chance remark by another parent has been a significant lead for me in getting the right support for my son. I don't think anyone is making assumptions or generalising about it. It may be that dopamine is implicated in 2% of children with autism, and in some children without autism. I am well aware that a model of autism as a unitary condition means that it could well be (wrongly) generalised to all children with such a diagnosis. I don't see that that is any worse than a relevant factor for a small number of children being ruled out for them because it isn't relevant to all. For example, children with autism are not being routinely tested for gluten/casein intolerance because 'studies have been inconclusive'. The studies have also been very badly designed. Poor methodology and/or inconclusive results does not mean that a hypothesis can be rejected. This means that there are probably autistic children out there with gluten and/or casein intolerances who are not on appropriate diets because there's no evidence that gluten and/or casein 'causes' autism. They probably don't 'cause' autism. That doesn't mean kids with autism can't be gluten/casein intolerant.

Hi baddad. Sanctions/rewards. I was referring to formal systems such as staying in at playtime, getting sad faces, etc, which the child may not be able to link with their behaviour. Teachermum has made it clear she doesn?t implement that kind of reward/punishment schedule. I?m not sure it?s useful to do a fine-grained abstract analysis of what constitutes a sanction or not because whether or not sanctions or rewards are used, and what they are will depend on their effectiveness in shaping the child?s behaviour. Dopamine. Not sure what you mean by ?diagnosis?. Just because ten children all fit the diagnostic criteria for autism does not mean that they are all going to have the same causes for their symptoms. I?m quite interested in finding out what causes autism, and in my son, and in some other children, it?s pretty clear that dopamine is implicated. Several other neurotransmitters are implicated too, but I mentioned dopamine because we were talking about rewards/punishments and you asked about research. ?? the basic response patterns that are evident in all lifeforms remain a constant.? Sorry, you?ll have to unpack that assertion a bit! Takes no account of emergent properties of genetic interactions. As in addictive behaviours in humans. Home education. I?m not suggesting that all home education is suitable for all children, any more than all school education is suitable for all children. . But that?s exactly my point. I keep being told that children who don?t go to school won?t be able to cope with the real world. But I can?t think of anywhere in the adult world that is like school, apart from the armed forces or a call centre ? and even there, there are distinct differences. Even what children do in school isn?t real. I liked school, and did well, but that was because I enjoyed the work. I was very conscious that it was all a bit unreal. No one would die or starve or have no light or water supply if I didn?t do my maths homework. Exactly. You are there, supporting your son. You understand him, are aware of what he can cope with, and can pull him out at the first sign that he is really not handling the situation. That is not possible for most autistic children in most schools. Again, I don?t know where these adult classrooms of 30 people of one?s own age, immaturity and inexperience are. That?s what one would expect. So why is it so flawed? I?d second all that! As somebody said, ?We now have a global village, with a disproportionate number of idiots.?

My apologies to JeanneA for hijacking her thread - and for the length of this post. Here goes baddad! Sanctions/rewards. I have a friend whose son attends a Cambian group school. According to her, they implement a reward system for behavioural targets, but no sanctions. The only sanction is that you don't get the reward if you don't manage the behaviour. I?m talking about a formal system of rewards and sanctions, in which a) as you point out, the child may perceive the reward/sanction differently from what was intended, and b ) the child may have to make a connection between the behaviour and the reward/sanction. In some formal systems, the connection is a tenuous one and the child may not make the link, rendering the reward/sanction ineffective. Research. There's a significant body of evidence suggesting that some children with autism have dopamine issues. Low levels of melatonin, abnormal serotonin levels, blue light enhancing/worsening vision, poor frontal lobe function, and I've already mentioned lack of response to rewards/sanctions. Neurotransmitter sytems are complex and interact with each other, so I'm not suggesting dopamine levels are a primary cause of these problems, just that a lot of fingers are pointing at dopamine pathways. Punishment. I wasn't aware that I was using it 'frequently'. I was responding to teachermum's post, in which she used it. Since autistic symptoms are likely to be caused by a range of different primary causes I don't think there are any 'autism-specific' phenomena. Positive and negative reinforcement are not symmetrical in their effects, and different children will respond in different ways. The salience of the reinforcer to the child also plays a part. My son, for example, loved getting stickers as a reward at school, but their effect was significantly reduced if they were football stickers because he hates football. School/work environments. This would depend completely on a) the school b ) the level of disability and c) the work environment. Someone with AS who was academically able, attended a supportive school and ended up as a university research fellow could have a very successful career and a happy life. For someone with a wide range of disabilities, who attended a school that had no idea what it was doing, and who had few employment options because of where they lived would have a different story to tell. It isn't the school environment per se, which prepares children for work, it's what happens in that school. Also, it isn't work per se which is more challenging than school, it's what happens in the work environment. Children learning social skills. Well they do if it's a good school which understands what it's doing. My son's school's model was to throw children into an environment many of them couldn't cope with, punish them when they got it wrong, but fail to model appropriate behaviour, and fail to supervise adequately. This was a recipe for disaster, which is why so many parents complained about the level of bullying. Artificial environments. I'm not sure how exposing children to social situations they can't cope with prepares them in anyway for adult life. Just the opposite, IMO, since they will have learned to avoid problematic situations because they know they can't deal with them. Bandura's social learning theory suggests that people learn best when good behaviour is modelled in a safe environment. That is happening in some schools, but not in all. Why do you think school is a 'real' environment? What reality does it reflect? We could design any school/education system we liked provided it was workable. The educational pendulum has swung steadily to and fro over the last 150 years. Until the education system is actually derived from what we know about how children learn, rather than on political ideology or what Chris Woodhead did when he was at school, it will doubtless continue to swing for the forseeable future. Tribal social groups. I wasn't suggesting that a tribal lifestyle was normal, nor was I advocating it; I said it was 'natural' in response to a comment about HE being 'artificial'. It's the way human beings tend to socialise if left to their own devices. It has some serious downsides, which is why all societies have developed complex cultural mores to improve things. It also has some benefits. There is no need to abandon the baby with the bathwater. I would also question an acceptance of the way the modern world works. The way the world works is usually a product of human choices - the current model is a deeply questionable one of the global economic village. We don't have to do it like this just because the G8 think we do.

That would be fair comment, teachermum, IF, on balance, a child with autism was learning to follow the 'rules of society' in school. Unfortunately, for my son, that wasn't what was happening. A couple of observations: 1) schools are nothing like the environment a child is likely to enter as an adult. The only current work environment I can think of which is similar to that of school is a call-centre or large open-plan office, neither of which someone with autism is likely to choose to work in. I think schools forget this, because teachers, by definition, (I used to teach in the primary sector) are often not very familiar with other workplaces, and it's easy to assume that the child's future work environment will be like the teachers' work environment. In my experience the workplace is much generally much smaller-scale, much more negotiable and adaptive and much more supportive than school. 2) schools are full of children. By definition, children do not behave like adults. They are still learning these skills and often get them wrong. The main lesson my son learned about socialisation at school (aged 8) was this (in his words); "I was very kind to the other children and they kept treating me like a mouthful of dirt." They did. He had the scars and bruises to prove it. Well done for getting your son a statement. We started the statementing process twice, but it was never completed. Massive under-resourcing led to unbelievable delays in the evidence-gathering phase. My expectations for the school to 'make adjustments' were ignored, as were those of the learning support advisory teacher. By the time we had reached the conclusion that the school was unable (or unwilling) to support our son appropriately, he was in such a mess from the lack of appropriate support and the bullying that we had to remove him from school for his own safety. We could have kept him at school and 'forced the school to be more inclusive' by kicking up a bigger fuss, but weren't prepared to risk our son's well-being in the process. I think you should also be thankful that your son responds to punishment. Many children with autism don't. There are issues with the dopamine pathways which mediate reward and punishment and some children simply don't respond to sanctions - or rewards, for that matter. It's significant that some autism-specialist schools have sanction-free regimes. No they shouldn't. But some of them have no option. Our local Parent Partnership Service recently called a meeting with the LA because they were concerned about the number of parents who were taking their SEN children out of school because of poor support. I was invited to the meeting as a token parent! The LA have just built a state-of-the-art special school and argue that there is no way they can build a similar school for autistic children - the area of support most lacking. They also say they have offered to support schools who want to provide special units on school sites, but have had no takers. They are not in a position to force schools to comply. I also feel that what sort of education is 'artificial' is a moot point. I would say that the current, curriculum-centred model of state education is very artificial indeed and runs counter to a huge body of research from the first half of the 20th century looking into what approaches were most effective. And I think it's a bit artificial for children's peers to be a group of 30 children who happen to be born within a few months of them. Human beings are tribal by nature, and 'naturally' associate with family and neighbours of different ages. Also many home educated children are far from isolated. In short, there are a number of systems issues here which make it very difficult for what 'should' happen to happen. I honestly think you have been lucky in that your son's educational provision is working. My son's infant school was brilliant, if hampered by the LA's lack of resourcing. His junior school was awful. I'm open-minded about home educating my son. It's not what I would have chosen, because I know that a good school can offer opportunities that I can't. I am actively engaged with a local parent group lobbying for support for children with disabilities. I want to see appropriate support, locally, for every disabled child and every child with SEN. But I am prepared to continue home educating my boy until he's 18 if necessary, rather than put him back into an environment like the one we took him out of.

I agree, Mumble, that children who are being abused, and children with attachment problems can show unusual behaviours. I also agree that possible abuse or dysfunctional relationships need to be investigated. However, in my experience, these are often not investigated in a systematic way by people who are well-qualified to do so. They are often snap judgements made by professionals under pressure and qualified in one relevant area but not in others, after observing a child they've never seen before for 30 minutes in a context unfamiliar to the child. These are hugely complex issues, as you will be aware. What, for example, constitutes 'abuse', 'maltreatment', 'significant harm' or 'disordered attachments' ? Some people believe that smacking, per se, or refusing to force a kicking and screaming child into school puts the child at risk of long-term damage. I would fundamentally disagree. Also, as you point out, times change. When I was a child a parent who did NOT smack was seen as not acting in their child's best interests and school-refusal would cause people to start looking at the school, not the parent. Anyone familiar with developmental disorders will not start looking at abuse or dysfunctionality in the family first. I completely agree. Unfortunately, human beings, even very well-qualified, intelligent human beings, like to keep things simple. Keeping things simple is something our brains do without so much as a by-your-leave, to reduce cognitive loading. Thinking uses up an awful lot of energy. It is so easy to plump for an explanation which supports our preferred model and to completely overlook the fact that the evidence also fits 20 other possible explanations. We need to be on our guard against this. Take Kanner, for example. In his first paper, he carefully records details of the children's relatives and family backgrounds. His discussion shows that he is undecided as to whether autism has origins in nature or nurture (inherited or due to upbringing). A few years later he opted for the nurture explanation, even though there was no more evidence to support this view than there was for the genetic explanation. As a scientist, he should have stayed open-minded IMO, as should a lot of people who are under pressure to make a diagnosis or attribute a cause before they've had time to consider all the evidence. And they should always be qualified to consider all the evidence.

Hi. Brief intro first - I joined this site some time ago but have hardly ever posted. Mum to ds (10) with recent dx of ASD and dd (14) with chronic post-viral syndrome (similar to chronic fatigue syndrome), but no diagnosis. Really shocked by what's been described in this thread. I'm becoming increasingly concerned about the tendency to attribute all children's behavioural problems to parenting. It's just as bad as trying to 'medicalise' everything. Diagnosing so-called mental disorders by matching symptoms across patients and sticking a label on them was forgiveable when we didn't know much about DNA or how the brain worked, but there's no excuse for such a system now. Most of us have abilities or disabilities which depend on our genetic make-up, the way we're brought up, and the situation we're in at present, in roughly equal proportions (a bit more on the genetic side, actually) so why developmental problems can't be viewed this way, I don't know. No, I do know. It's because of ignorance. I would be prepared to bet that most of the proponents of Attachment Disorders know very little about genetics or neurology. Parents, who are unlikely to be able to defend themselves against false accusations of abuse or poor parenting are an easy target. I note, for example, that the proposed NICE guidelines about when to suspect maltreatment of children hardly mention school as a possible source of maltreatment, in spite of the fact that the NSPCC says 30% of children report being bullied at school, and SEN support (affecting up to 25% of children in school) has been described by a House of Commons Select Committee as not fit for purpose. Not to mention the distress caused by the NHS failing to diagnose developmental problems correctly.

I've just been searching Amazon to get a feel for who's publishing what in ASD. It might be worth you doing the same. If you look for books which are of the same type as your own, you will probably find publishers who handle that kind of material. Jessica Kingsley springs to mind - David Fulton is another. It's worth approaching the publisher first, or checking out their website, to see how they prefer new material to be presented. Most publishers are very reluctant to accept an entire manuscript 'cold' these days. Good luck.

Sorry Mumble - no intention of worrying you. There's a lot of evidence to suggest that some people benefit from increased exposure to blue light; it can help with motor control and with regulating the body clock (it supresses melatonin production, which means it wakes us up). There's also evidence that people respond to blue light differently, presumably because we have different numbers of blue-light-responsive cells in our retinas. I haven't come across any research into macular degeneration (most common in the elderly) which looked at which groups of people got it. It could be that people who need more blue light don't get macular degeneration when they're older. I guess the upshot is that exposure to short periods of blue light, particularly in the morning, can be beneficial, but if you shut yourself in a darkened room with a blue light all day, it would play havoc with your eyes as well as your sleep patterns. As for the Optimeyes system, it means you can alter the light to suit you perfectly, or presumably change it for different family members. You still might benefit from using a different coloured light bulb, even if it's not precisely the best match for you. I always find LED or halogen lights much more comfortable than fluorescent ones anyway. The most comfortable colour for me is yellow-green which means normal yellowish artificial light comes pretty close. Hope this helps!

The times I've done this! Saying sorry afterwards is definitely the way to go. It usually results in my kids saying sorry too. I think it gives them the opportunity to reflect on what happened. But make it clear you are apologising for your out of order behaviour, not for refusing to let her wear the jacket!

My daughter (13 and not ASD) has always been a fussy eater. I asked for her to be referred to the dietician when she was five, because she'd had a virus which led to a long period of post-viral problems. I wrote a list of foods she ate for the dietician. She looked at it and said "You should see what some of them eat - it's a wonder they grow at all". I then told her we had tried not allowing crisps or biscuits between meals, to see if dd would eat better. "Oh, no" she said," Don't cut out the carbohydrates, otherwise they start metabolising the proteins for energy." Our GP was of the opinion that a child would have to be very severely malnourished for it to affect their health. That's one set of opinions. On the other hand, you've got a huge body of research showing how mineral/vitamin/trace element deficiencies can cause health problems. Dd has had chronic, recurring viral tonsillitis recently, so we've tried all sorts of supplements. Boots kids' multivitamin/multimineral worked for a while until she discovered they gave her diarrhoea and anyway she couldn't stand the aftertaste. We then tried tincture of echinacea. This was really interesting. I tested it before giving it to her, and thought it tasted faintly of grass. She tried it and said it was the worst thing she had ever tasted in her entire life. She wasn't kidding, either. So now we're on vitamin C with zinc plus using sea-salt instead of table salt (for the minerals). Something's working. Her health is slowly improving. If it wasn't so worrying, differences in taste/texture preference would be fascinating. I've come across so many children who can't stand the texture of mince. And why do so many children hate vegetables? Mine used to eat everything as babies and toddlers; ds used to scrounge grapefruit off me at breakfast time. I'd warned his it was sour, so he used to call it 'sour'. "Can I have some sour?" Anyway, it's good to know there are a lot of parents with fussy eaters around!

OK, trying again. Just to say that the 'middle guy', the 'light expert' is bona fide. We took our son to see him a few weeks ago and he identified the cause of his reading difficulties within minutes of him walking in the door. The 'special' light he mentions is not a light bulb, it's a piece of high tech kit on which you can adjust the wavelength (colour) of the light precisely to suit your own needs. Full spectrum lights for treating SAD are around �200, so this doesn't seem outrageously expensive in comparison. All technologically complex equipment with low take-up is expensive initially (think early Sony walkman/first PCs). Our son reads better by blue light. I can't read anything under blue light. Intrigued by this, we bought some coloured LED bulbs to experiment with ? being careful as blue light is thought to cause macular degeneration. I mentioned this to our Parent Partnership officer when she came round to drop off some paperwork. She tried the blue light and was astounded. She could read text that she normally needs specs for. If you want to check out the research, you could search for <<blue light melanopsin>> in Google or Google Scholar.

Tried to reply to Mumble's post yesterday - reply appeared to work OK, but had disappeared later. Just testing now.

Hi just introducing myself. I have a nine-year-old son with possible AS and a daughter (13) with a post-viral syndrome. I've recently taken them out of school to home educate. Looking forward to meeting you all and learning from you.