coolblue

Hi Has he had any problems attending school before? If he's complaining of lack of sleep and fatigue I would get his health checked out. Following a bout of tonsillitis when she was 12 my daughter was too exhausted to attend school for months. It also severely disrupted her previously normal sleep pattern. If she hadn't had tonsillitis, we would have assumed she was a 'school refuser'. In spite of claims that she had a fabricated illness and that her symptoms were of 'psychological' origins, blood tests suggest she has actually had glandular fever. The autistic spectrum is associated with immune system problems, so it's something worth considering. Also, my son (ASD) used to be sluggish and tired all the time until we switched from cows' milk to goats' milk. Again, casein and gluten intolerances are associated with autistic spectrum disorders, and are worth investigating. cb

We've been trying to get ds's visual problems sorted for several years now. This is what I've discovered so far. (Can't guarantee it's all correct and would be very interested in any further info!) Vision therapy is a term used to describe a whole range of therapies for different visual problems. An optometrist, or opthalmic optician is someone qualified to test vision and prescribe lenses. A behavioural optometrist assesses visual function in relation to behaviour, particularly developmental disorders. They use a lot of different therapies, and vary in their approach. I don't think the 'behavioural' aspect is regulated, but the optometry aspect is. An optician (also regulated) is usually a dispensing optician - qualified to make and fit lenses. An opthalmologist is a medical doctor specialising in eye problems. An orthoptist also assesses a range of visual functions, such as problems with eye movement. Orthoptists are often based in hospitals and are part of a team working with visual problems. Orthoscopics is the brand name of a colour testing system developed by Ian Jordan (although it also appears to be the name used for some telescope and binocular lenses). If I have understood the situation correctly, there are three different theories underlying the approaches used. One is that individual differences in the distribution of cone cells in the retina sensitive to different colours lead to problems with colour vision (including colour blindness). The use of tinted lenses can sometimes correct such problems. This is the idea behind the ChromaGen system. The second theory is that some non-visual cells in the retina, sensitive to blue wavelength light, have a physiological effect, particularly on biological rhythms, sleep patterns and motor function. Tinted lenses can help stabilise eye movements and motor control by adjusting the amount of blue light reaching the retina. The Orthoscopics system is based, at least in part, on this model. The third theory is that certain visual stimuli can cause visual stress, which people experience as headaches, nausea, problems seeing text clearly. This is very similar to scotopic sensitivity or Meares-Irlen syndrome. Tinted lenses can sometimes correct the problem. The first and second theory have some fairly solid bases in research, although since the Orthoscopics one takes into account recent research into the effects of blue light, it makes much more sense to me. I haven’t yet been able to find an explanation for the visual stress/scotopic sensitivity model. What is clear is that tinted lenses can make a big difference to vision and motor function in some cases - but that it’s important to find the right colour. We found that Ian Jordan was very thorough - as well as entertaining - and managed to get our son through a lot of tests; and he hates having his vision tested. There are other optometrists using Ian’s system. We’ve also seen a hospital orthoptist who was dreadful. She talked too fast and kept changing her mind about the tests and ds just zoned out. After three exhausting appointments, we managed to get to a colour that ds would wear, but I’m not at all sure it was the right one. She asked him to find a colour he ‘liked’, not one that helped him see better. Must have been close, though, because he can walk in a straight line when he wears these specs, but not when he wears his untinted ones. I think what is really important is to talk to the optometrist in advance about the visual problems, about what they do and why they think it works. And how much it costs. Most high street optometrists do not do colour testing, so you’ll need to find one that does, or a behavioural optometrist or orthoptist. Hope this helps. cb

We are thankfully not up against the same problems as yourself, but I've been really taken aback by the fact that it is so difficult to get a full medical assessment of a child with obvious developmental and health issues. It took over 8 years to get a diagnosis, but 'autism' doesn't explain the well-documented sensory and motor problems our son experiences. He has visual and auditory and balance problems, but has never had a full examination of his visual, auditory or vestibular function - everyone guesses it's a brain disorder. How do they know if they haven't checked his ears or eyes? And we haven't started on the dietary and allergy issues. We have, however been offered Prozac for his 'anxiety' - what anxiety? There was a report out last week about poor child healthcare, wasn't there? But of course I can't find it. cb

When ds (then 10) had just been diagnosed I was on tenterhooks about whether to tell him he had an ASD, and if so how. I eventually got the opportunity and explained. There was a moment's silence. Then he said "You know when they used to build castles...." and proceeded to quiz me about the finer points of mediaeval architecture. It was only weeks later, that he repeated, almost verbatim what I had told him about his diagnosis, so he was clearly listening, just more interested in castles at that moment. Another was when I was explaining why we thought he should change schools (he was 11). I explained about the reasons, and the process, and in case he was expecting this to happen tomorrow, added "But this all could take quite a long time." He retorted "I bet it won't take as long as it took for you to explain all that to me." cb

At the risk of turning a light-hearted thread into something serious button phobia is a recognised phenomenon. http://www.gregology.net/Health/Koumpounophobia There's evidence of a hard-wired response in primates to things shaped like bugs or scuttling things - and you can imagine how that might have come into being as a useful safety feature. Of course your son might simply have not liked the colour, or seeing you wearing something different, or had bad memories of buttons himself. My son has had real problems with shoes, especially new ones. He once (at 2) demolished an entire shoe display, and used to regularly scream the shop down. As he got a bit older, we realised he fell over a lot more when he wore new shoes, and then of course the OTs found he had balance and proprioception problems, which would have meant that new shoes meant that the ground felt different under his feet and he would have had problems keeping his balance and not tripping over. cb

Hi Not sure of the history here. Just to say that it's worth asking the SALT at the beginning of the assessment what they are going to test. Ds had three referrals to the SALT from school, and each time she tested his comprehension, and said it was fine, even though I'd told her how concerned I was about his speech and listening. The penny finally dropped when I realised the school thought he had a comprehension problem, when it was actually an auditory processing problem. Ds takes a long time to answer a question and his teachers were assuming he didn't understand and not giving him time to respond. The SALT should have picked this up, rather than assumed the school were right, but she didn't. I re-referred him to the SALT service myself and this time we got a much better SALT, who gave ds a much more thorough assessment and a lot of useful advice. Make sure they hear about your concerns, as well as the school's. Hope this helps. cb

We bought a cheap 2-channel dvd player like this one, http://www.amazon.co.uk/Alba-DVD62Xi-Channel-Player-Silver/dp/B000JBXWRS but different model, that you can set to the region of your choice, because the kids were always hankering after region 1 dvds. Ours had good reviews and has worked really well for the small number of region 1 dvds we watch. Worth thinking about buying a dedicated player for other regions. cb

Hi Thomas There used to be a full list of criteria for developmental disorders online, but it's vanished. This was the best I could find: http://www.psychologynet.org/dsm.html It's important to remember that what the Diagnostic and Statistical Manual of Mental Disorders does is to group patients according to their symptoms and give each group a label. The diagnostic criteria listed do not lead to a diagnosis in the sense that measles is a diagnosis, where we can identify the exact cause of the symptoms. It's the equivalent of describing all once-common childhood illnesses as 'childhood rash disease' and lumping together measles, german measles, chicken pox etc. under the same umbrella heading because they all involve a fever, a sore throat and a rash. It could be that some people meet the criteria for Asperger syndrome because they have one underlying factor in their brain development that has caused their symptoms, or because several different factors have happened to coincide to produce a similar range of behaviours. Some people could have exactly the same brain development issue or coinciding factors and not get a diagnosis of AS because these factors did not lead to a *significant* impairment of social interaction or communication or, as possibly in your case, to noticeable restricted or repetitive behaviours. It's also important to remember that the impairments listed in the diagnostic criteria apply to the entire population; everybody has some impairment in social interaction, communication or repetitive behaviour. We're talking about a 'diagnosis' that is essentially deciding whether or not someone falls within the normal range in terms of behaviour, which is pretty subjective. Because the definitions of the diagnostic criteria are so broad, there's plenty of scope for differences of opinion about whether any given individual falls into one category or another. So I wouldn't set too much store by the finer points. If you feel having a diagnosis might be helpful, then find out about getting a diagnosis; otherwise, see yourself as one of the wide variety of unique individuals that make up the human race.

Both these characteristics can be the result of difficulties with switching the focus of attention, rather than an active preference for a particular activity. All the diagnostic criteria for autistic spectrum disorders are related to frontal lobe function, which is why the 'executive function' model was suggested. Having difficulty changing the focus of attention, or finding having to do it irritating or distressing, rather than feeling passionate about growing chrysanthemums or rock-climbing, or whatever, would be the thing to look for. cb

3% of the UK population is estimated to have problems with face-recognition. It is quite likely that a similar proportion have difficulty 'reading' facial expressions - though not necessarily the same 3%. It is also likely that some people do not experience some emotions, or that they cannot identify certain emotions in other people. Young children have to learn to read facial expressions, and do so at differing rates; some of those diagnosed with ASD take longer than most people to do this. Facial information, and emotional information are dealt with by different parts of the brain, but of course in a typically developing person there are strong connections between the two areas. Difficulties experiencing, recognising and expressing emotion, reading facial expressions and body language are not uncommon in people diagnosed with ASD, but it's the problem with the facial expressions or the emotions that produces the characteristics we call 'autism', not the other way round. In other words, some people with a slight problem with faces/emotions might be seen as a bit socially awkward but not qualify for a diagnosis of ASD; other people might have considerably more difficulty and this produces a 'significant' impairment in social interaction. Other people might have a significant impairment with social interaction (and therefore a diagnosis of ASD) for an entirely different reasons and have no problem with faces/emotions. So, in short, emotional recognition is something that's learned, that people learn at different speeds and with differing degrees of success, and can be part of someone's autism. cb

My son has quite noticeable problems with receptive and expressive speech. In year 3, his mainstream class teacher was an NQT with one year's experience, IYSWIM, and initially I was a bit concerned about how she would cope with him. But he seemed to respond quite well to her, and most of the hiccups were ironed out by his (then excellent) SENCO. Then, one day towards the end of the school year, he came out with this parody of a song he'd heard on TV, about his teacher, which wasn't very complimentary (it was witty rather than rude). I asked him where he'd learned this and he said he'd made it up. Since he's become more verbal, more and more things have been coming out about what happened in that year at school, that make sense of some very garbled or sketchy accounts I got at the time. Since my son is a pretty unconvincing liar, and I also found that there were a lot of physical bullying incidents the school were aware of but hadn't mentioned to me, I can't see any reason to doubt what he's said. The BIG problem with the education system is that it is organised round and focussed on the performance of the average child. Any school that wants to improve the attainment of children who are not within the normal range (gifted and talented, or with SEN - I've got one of each) is going to be swimming against the tide. My children have each attended brilliant schools that essentially said "SATs! Pah! We are in the business of educating children, not preparing them for tests" and in both cases, the schools had pretty mediocre Ofsted reports and the HTs took early retirement due to poor health. They have also attended a school which had a glowing Ofsted report and a HT with an excellent reputation locally. In my view, it was a quite unpleasant sausage factory, and the staff had some bizarre notions about the role played by KS2 SATs in the child's future success. The system goes on a lot about inclusion, but since it's structured in a way that isn't inclusive, and teachers have not been trained to teach children of all abilities for at least the last 20 years, I can quite see how education comes to be about coping for a lot of children. cb

With regard to point 2 on the report - in my experience all 'spiky' profiles are considered unusual, because they mean, as you point out, that the child varies considerably in their abilities with different subtests - most children would show a more even profile. Of course a spiky profile tends not to be that unusual in children with learning difficulties - because they often have specific difficulties with specific skills. PSI stands for Processing Speed Index and tests speed of processing of different types of information. The Wikipedia entry for the Weschler Adult Intelligence test has a nice diagram that shows how the test is constructed. http://en.wikipedia.org/wiki/Wechsler_Adult_Intelligence_Scale Since teachers in mainstream schools have only been required to have SEN training since last year, it is hardly surprising that schools don't use reports like this to inform their teaching. My son's SENCO told me she often couldn't understand the specialist reports she received. cb

There are hand movements that cross cultural (or even species) barriers, such as the extension of a hand in friendship, or a raised fist indicating a threat. Other hand movements have symbolic meaning within cultures. Some politicians are coached as to how they use their hands, so they don't irritate people, distract from what they are saying, or look aggressive or defensive. There are a lot of books about body/hand language but they vary considerably in quality. If you're interested, go for one written by a bona fide researcher. If in doubt, be honest and keep your hands still. cb

'Autism' started out as a descriptive term for self-absorbed behaviour. The term was originally coined by Eugen Bleuler to describe one of the facets of schizophrenia. Leo Kanner identified 'autism' in children who didn't show the other characteristics of childhood schizophrenia, so developmental autism was born. Because it's a description of a set of symptoms, strictly speaking if you damaged certain parts of your frontal lobes plus certain parts of your motor cortex, you could develop autistic characteristics, but they would not look the same as developmental autism because the latter, by definition, is developmental. It would be possible for an infant with brain damage to have developmental autism, but it would look different to the effects of damage to the same areas of the brain in an adult, because it would interfere with the child's developmental trajectory. I think you are quite right, that if the cause of autistic characteristics is known, the characteristics are often not referred to as autism. Children with visual and auditory impairments sometimes show autistic characteristics, but are not always diagnosed as autistic because we know what's causing the behaviours. Over the years autism has evolved from a description into a 'condition' even though there could be many different causes for autistic characteristics. Even though researchers are well aware of this, the tendency of the diagnostic criteria for autism to lump everyone together regardless, has seriously muddied the research waters, IMO. cb

http://news.bbc.co.uk/1/hi/health/2151289.stm We've known about the risks of smoking whilst pregnant for some time. It's not surprising that some of these children are autistic. But the comment about the causes of AS in the Telegraph article doesn't actually make sense. I wonder if it has been cut-and-pasted rather hastily. cb

Hi Carol I think it might just have been too much for your daughter all at once. Mine used to do this a lot when she was younger. Change needs to be gradual and managed carefully so it isn't overwhelming. Sometimes it needs to be very gradual and managed very carefully. When your daughter leaves school and starts college she doesn't have to leave home for a week to start off with. Instead you could break the process down into small steps and take one at a time. A very gradual transition and she should be fine. cb

Ah, proving that there is a physical reason for her behaviour is a different matter. Now I see where you are coming from. Veg growing is brilliant. It really centres you. cb

He's spot-on. So's Gerd Gigerenzer. Thanks Jaded. cb

Hi bubblesboo You should have had counselling after the incident. Get in touch with victim support or the equivalent. Even if it was a long time ago, if you still have problems as a result, you should get help. cb

Not formally an Aspie either, but have a lot of experience of work environments. It sounds to me as if you and your Senior Personnel Adviser have very different expectations of how people *should* behave. You feel she is disrespecting you, and from what you've said, it sounds to me as if, rightly or wrongly, she finds the way you behave very annoying. She is sending 'don't behave like that' messages - ineptly and pointlessly perhaps - but that's what I think she's doing. You make a number of references to age in your post. Age isn't often a key factor in organisational hierarchies. Position, responsibility and ability are. I couldn't work out how the Adviser's status and yours compare. She might be only two years older, but if she's in a more senior post and therefore has more responsibility, she might have a very different perspective of the degree of respect she owes you. She might also feel that you - again rightly or wrongly - disapprove of her and others. The 'we'll soon be out of your hair' comment suggests that she thinks that you don't like her and are behaving in a way which makes that clear, and which she finds uncomfortable. Which sounds as if it might be true. Albeit with good reason on your part. The way to tackle this, in my view, is via your annual job appraisal. Assuming you have one. And assuming that the Adviser isn't the one doing it. The reason I suggest an appraisal as an appropriate forum is that then you can raise the issues you're concerned about without making an 'issue' about it. If you don't have an annual job review, ask the most appropriate manager for one, because you're are clearly very unhappy with work at the moment. I think there are three key issues that need to be tackled: some clarification of your role and agreement between you and the Adviser about what you are expected to do; how you are perceived by your colleagues - it's quite possible people are completely misinterpreting what you do; and how your colleagues are perceived by you. If you pitch this from the perspective of 'I feel as if this, that or the other is happening' rather than assuming that this, that or the other is actually happening - even if it's patently obvious that it is - you are likely to get a more sympathetic hearing from management. Essentially, although your AS might be the root cause of the problem due to the way it affects your behaviour, this kind of scenario is not uncommon and it's probably best to try to get some help with clarifying the specific issues before trying to second-guess what other people are thinking and changing your behaviour in a way you hope will help. Hope this helps. cb

Whoa, that's a lot to contend with SuzyQ. The difficulty with brain scans is that they can tell us which parts of the brain that might be 'different', but don't tell us how to resolve the problems those differences cause. A great many behavioural issues are caused by chemical imbalances in the brain, but those chemicals are involved in a lot of different functions, so even if the imbalance is found, any drugs that could correct it might affect other parts of the brain and body and give rise to unwanted side-effects. Brain scans will help with research into brain function but it could be a while yet, because brains are so complex. In other words, it's unlikely that no one wants to get your daughter sorted out, they just don't know how to do it. I know it's not much comfort but quite a lot of serious mental health problems in teenagers do resolve in time. I hope you have some support to help pull you through. cb

Hi Tingers and welcome. You've had some excellent advice and I hope it's helped with the way forward. I have a 12-year old with AS and because of the diagnostic problems involved I developed a bee in my bonnet about it. I just wanted to comment on the relationship between diagnosis, AS and digestive problems. Autistic spectrum disorders, including AS, are 'diagnosed' in the sense that a cluster of symptoms matches the clusters of symptoms shown by other people, and is given a label. In most cases we don't know what causes those symptoms, so it's not a diagnosis in the sense of diagnosing measles, where we can actually identify the specific virus that causes the illness. It's as if patients complaining of a fever, sore throat and skin rash were being diagnosed as suffering from Blenkinsopp's syndrome (not a real syndrome) - the symptoms of which are a fever, sore throat and skin rash. Of course, we worked out many of the different causes of these symptoms long ago, so any doctor lumping together all their patients with these symptoms as having the same condition these days would be thought eccentric to put it mildly. So although there is little doubt that people with significant impairments in social interaction and communication and showing restricted or repetitive behaviours have characteristics in common, and that those characteristics have organic causes, it doesn't mean that they all have the same cause for their symptoms. The label applies to the symptoms, not the cause. So although people with AS often have issues with emotion (they might not be able to read it or express it as well as others) it isn't necessarily an impairment in emotional understanding or expression that's causing their symptoms. That would be a bit like saying this person's fever, sore throat and skin rash is caused by them having a fever, sore throat and skin rash. What research appears to be homing in on, is that the symptoms of ASDs are caused by a genetic predisposition, coupled sometimes with an environmental trigger. Abnormalities of neurotransmitters are a likely candidate in many cases. So what's most likely is that the characteristics of AS and co-occurring digestive problems are both caused by the same physiological issues. Serotonin is one possibility, since it is involved in a wide range of physiological processes including mood, sleep, homeostasis, and the functioning of the gut. In short, genetic factors lead to physiological factors which in turn affect social interaction, communication and digestion. The physiology of neurotransmitters is very complex, which is why research is still a work in progress. I think a diagnosis, even if it's just a label for symptoms, can be very useful because it means that a medical professional has said; this person has a physical condition which causes them to behave in certain ways. They are not simply being eccentric, awkward or difficult. Hope this helps. cb

Great idea - if the issue is just de-stressing. If the issue is the fact that there are taps in the house which are just waiting to be turned on..... cb

I think the health service and education system are almost travelling in opposite directions, here. I can understand why health practitioners are reluctant to diagnose children with poorly defined developmental conditions. The child might grow out of development delays; it's not always clear whether an intervention has worked, or whether the child has simply developed; and the wrong label itself can cause significant problems. The education system, by contrast, is structured around a fundamental assumption that every child follows the same developmental trajectory - and if they don't then it's the job of the education system to get them back on track. So parents and teachers are getting stressed because the child is 'different' to his or her peers, and the only people who can explain that difference are saying it's far too early to make a diagnosis. Which, being translated by the teacher often sounds like 'there's nothing wrong with them'. It is then often assumed that if there is no [obvious] medical issue, then the child's difficulties must be caused by their home background. The only way round this is to ensure that all GPs receive training in developmental disorders and all teachers receive training in SEN. Then the thinking might start to get joined up. Though I must admit I'm not holding my breath. cb

It's because they think the autistic person doesn't know what delights they are missing. The idea that someone might actively not want to do the hockey sticks and sing-along thing is totally alien to them. Which speaks volumes. cb