coolblue

Exactly. It doesn't matter what diagnosis the child has, if we don't know what causes it - what the child and the family and the school etc etc need is advice on what to do to best support the child and the family with their specific difficulties. I can understand why doctors don't know what might improve the child's 'symptoms', but what's clear is that no one in healthcare has been monitoring the data and looking at what support works best for specific problems. cb

There was quite a bit of work done on this in the 1960s/70s. There's a really good review paper by Rogers & Ozonoff at http://www3.interscience.wiley.com/journal...=1&SRETRY=0 This line of research petered out in the 1980s when 'psychological' models took over. There's a lot of evidence that people diagnosed with autism have sensory hyper- and hyposensitivities. Trouble was, studies tended to assume that everybody diagnosed with autism had the same condition, so it was concluded that there was no typical pattern, therefore sensory hyper/hyposensitivities were not a characteristic of autism. Of course people not diagnosed with autism can have sensory hyper/hyposensitivities too; but their sensitivities might not result in significant impairments in social interaction, communication or restricted or repetitive behaviours, so they don't qualify for a diagnosis. Interest has revived recently. ARC in Cambridge have done some work on visual hyperacuity and tactile sensitivity, and there's a fairly robust body of work on visuo-spatial and auditory processing abnormalities. I would question whether it follows that because a child has sensory sensitivities 'nothing can be done'. The sensory sensitivities might not be curable, but desensitization techniques can be quite effective and children can be taught strategies to help them manage situations they find uncomfortable. But these often take time to be effective and in the meantime families still want to go out together, so a compromise might be the best short-term solution, if the child can tolerate it. You have to start where the child is and work from there. cb

You're quite right, we can't "assume" hypersensitivity, but given that the OP's description fits my son exactly - even down to the golf, but we haven't managed to do this properly yet - and given that sensory hypersensitivity is pretty common amongst people with autism, particularly children - I think sensory hypersensitivity is a pretty safe bet. Bear in mind that sensory modes are complex. So a child might be hypersensitive to some sensations and hyposensitive to others - in the same sensory mode. Many children with autism are not very sensitive to pain, but are very sensitive to light touch, for example. Physiologically, that's perfectly possible, because there are a number of different types of touch receptor in the skin and muscles, specialising in specific types of stimulus. cb

Even if you make a decision about a school that's 'right' at the time, things can change. I'd go with what's the best option educationally, even if it raises issues over transport and/or uniforms. On uniforms, I do wonder why schools make such a big deal of them. AFAIK, there's no evidence to suggest that style of uniforms makes one iota of difference to educational attainment, or even discipline. I suspect fancy rules about uniform are used as an 'Aunt Sally' to distract attention from other aspects of the way the school is run, and to provide a steady stream of extra income for the school. cb

This could be a description of my son. His sensory issues have got worse with age (he's just 12) and also he has tried lots of activities and found them difficult, so he doesn't want to try them again. Even a ramble organised by a local autism charity turned out to be a nightmare because he didn't have the hyperactive-shrieking kind of autism that the other kids had. My guess is that parents with kids with sit-in -the-bedroom-with-the-curtains-drawn kind of autism don't even try to get them to join in things like that. However, what he does like is quiet country walks, and he's even overcome his fear of dogs in order to do them. We're working up to joining the local ramblers, who are mainly retired, because they are not likely to shriek at him and charge towards him at high speed. Or jump up him barking. He also likes go-karts and climbing frames - when there's no one else around. Basically, start from what he does like and work up from there. As baddad says, it's important for him to realise that he's entitled to like or not like things, but he shouldn't stop other people enjoying themselves, so perhaps you could take it in turns to choose activities and he could take something to do to stop him getting too bored while he sits it out when it's someone else's turn to choose. cb

Oh, and the chatting to strangers: what's common in AS is difficulty in controlling speech. Long rigmaroles about whatever the child happens to be interested in at the time. Because some children with AS aren't good at recognising faces, it can be difficult for them to work out who is a stranger, and who isn't. The social rules about who you can talk to about what and who might do what to you, are immensely complicated and typically developing 5 year-olds struggle with them. He's only five. He will learn. It will get better. It will be a while before he's going anywhere on his own anyway, and by the time he is, he will probably understand the issue of strangers better. cb

Children with ASDs often have problems developing bladder control. So this could be a case of being 'caught short' - especially if he's upset. They also often have sensitivities to smell, so it could be that your son doesn't like the smell in the bathroom - it might not be a bad smell, might be a cleaning product. Boys also have problems with their aim. This has been a big issue for my son. It wouldn't have surprised me if he got so fed up with being told not to miss the loo, that he took his custom elsewhere. I wouldn't bother about 'having words'. He has almost undoubtedly got problems with processing language, even if they are not obvious. You need to get the message across in a positive way. Give him a reward every time he uses the loo. Chocolate buttons are cheap and work well. In our son's case it was a penny each time. He soon had a massive collection and thought he was very wealthy! If he gets into the habit of using one particular place, like his bedroom, give him a bucket instead and reward him if he uses the bucket, then after a while call time on the bucket and move the target to the loo. You can get stickers to go in toilets that change colour if the child has a direct hit. They can help make using the loo more interesting. Hope this helps. cb

What struck me was this quote from the psychologist: "As it is so rare, it means there are very few services set up to specifically help the child as an individual and the parents and carers." Let's get this straight. Psychologists, like doctors and teachers, are professionals, right? They are trained and qualified to use their skills independently. The idea is that if they come across a type of case they haven't seen before, they are in touch with other professionals who can advise them, point them to previous cases etc. The psychologist doesn't have to wait for a service to be set up, surely? coolblue

There's a green paper on SEN coming out in the autumn. Should be dealt with in that. Green paper gives opportunity for consultation, discussion etc. cb

Sounds to me like an auditory processing problem - you probably need visual input as well. People will need to show you as well as tell you. cb

Strictly speaking 'autism' is a set of symptoms. It's a description of behaviours that are the outcome of a developmental impairment, not the cause of it. We don't know, of course, what the underlying cause(s) are. There could be different ones in different people. Any expressive and/or receptive speech problem in and of itself could produce autistic characteristics - ie a significant impairment in social interaction and communication and repetitive or restricted behaviours. Speech is a complex thing, so it's quite possible for a child to have several different speech problems. If they had problems with social interaction and communication as a result they could qualify for a diagnosis of ASD. This doesn't mean they have two different developmental disorders - ASD plus a speech and language disorder. I'd bet good money that what's underlying it all is an auditory processing disorder. cb

I wouldn't think it would give a useful reflection of the child's profile for more than a year. Children's development is very patchy and uneven and all sorts of changes could take place over three years, especially between the ages of 7 and 10 when a lot of cognitive changes and physical growth takes place. cb

We attempted toilet training with ds many times, starting at 2.5 years - the age his older sister spontaneously and successfully decided not to wear nappies any more. He was eventually consistently dry during the day of his own accord just before his 6th birthday, used the toilet to do a poo by the time he was 7 (we used bribery for this - he got a penny for sitting on the loo, then for sitting for one minute etc etc.) He's only recently started being dry through the night - again this was spontaneous and he's nearly 12. Nothing we had tried - alarms, waking, less fluids, more fluids, exercises - had worked. Now he's wet at night only about once a week and improving steadily. It (as several excellent professionals have told us when we've thanked them for remarkable improvements) is a developmental thing. cb

Attention problems are often related to sensory issues. So, people who are hypersensitive to certain stimuli are distracted by them; people who are hyposensitive to them seek additional stimulation. Sensory input is not only processed by what are usually referred to as the sensory areas of the brain, but also feeds directly into the frontal areas that are involved with attention. People differ widely in their sensory sensitivities and can also show variations in levels of neurotransmitters involved in processing systems in the brain. Basically, we each have a different pattern of sensory and attentional abilities. Whether you get a diagnosis of ADHD or ASD will depend on your individual pattern and what effects it has on your behaviour. Some people might have underlying conditions that always produce the symptoms we call ADHD; others might have underlying conditions that always produce the symptoms we call ASD. That doesn't mean ADHD is a single condition and you either have it or don't have it. Nor that ASD is a single condition that you either have or don't have. It's the pattern of variation that produces the symptoms and hence the diagnosis (or not). cb

Check your diet. I know that sounds really simplistic, but if you are busy, you can let things slip. I've always eaten well, or so I thought. But I've also suffered all my life from a variety of symptoms, including depression, which I thought was 'just me'. The last five years have been very stressful and I've been getting worse. I had a look at my diet and discovered my mineral intake was poor. My diet was OK, it wasn't varied enough. I tended to cook the same things and those things didn't include a wide range of vegetables. The large amount of exercise I was getting was making things worse. In my case it was magnesium that made the difference, but most other minerals needed a boost. The stressful stuff hasn't gone away, but I don't feel too tired to tackle them any more. Hope this helps. cb

I agree I think a diagnosis would be helpful to your daughter, but only, in the words of my son's paediatrician, because it will offer some protection from the system! In theory, children's educational and medical needs are supposed to be supported according to need, not according to diagnosis. In addition, autism is a set of behavioural characteristics that could be caused by different things in different children, not a single medical condition that children have or do not have, which is why getting a diagnosis can be problematic. For example, both my children have sensory issues. In my son's case they have resulted in him showing clearly autistic characteristics - problems with social interaction, speech and language, restricted behaviours and various specific learning difficulties - and he has a formal diagnosis. But he has no difficulty making eye contact or and often works out what other people are thinking. In my daughter's case there is no way she would get a diagnosis of autism, but some of her sensory hypersensitivities (such as with the taste and texture of food, for example) are more marked than his and she definitely shares some of his traits. So I would say don't set too much store on the diagnosis in case you don't get one for your daughter - but do emphasise your daughter's specific needs and the support they require. cb

I don't understand why it's so difficult either. This is one of the best descriptions of the possible causes of autism I've come across http://scienceblogs.com/pharyngula/2010/06...ch_for_simp.php although I wouldn't completely agree with him about environmental factors. cb

There's a basic assumption running through a lot of autism research. It is that all people diagnosed with 'autism' (ie presenting with certain characteristics which, in the minds of the practitioner doing the diagnosing resembles the very vaguely defined diagnostic criteria for autism) have the same cause for their autistic characteristics. In other words there is an assumption that there is one thing called 'autism' and you either have it or you don't have it. The diagnostic criteria are so broad and fuzzy that almost anything could cause autistic characteristics (different things in different people). So it's hardly surprising that some autistic people have abnormal gut microbes (so do non-autistic people) or subtle genetic variations from their parents (so do non-autistic people). I would question the first sentence of the last paragraph. "Autism is a complex brain disorder that strikes in early childhood" and would like to replace it with "Autism is a set of symptoms that tends to appear in early childhood". cb

Hi Lindy We took our son out of school at the end of Y4 because he was getting so distressed due to lack of support and bullying it was affecting his physical health. He's intellectually able but at a total loss when it comes to handwriting, spelling, arithmetic and motor skills. He also has specific problems with expressive and receptive speech and with reading. Soon after starting home education, we discovered that he has specific visual and auditory problems that explain all the things he finds difficult. He now has a diagnosis of autism, but it isn't the autistic characteristics that caused most difficulty at school. It has been really hard to get appropriate treatment for his auditory and visual problems, but at least knowing what the problems are has enabled me to adjust what he does at home to make it accessible to him, and of course being in a familiar, quiet environment has helped him make a lot of headway with things he's best at, like science and reading. He's been able to take handwriting and arithmetic etc at his own pace. But it did take time for us to find a routine that suited him and a lot of patience and faith that he would learn. He was so averse to anything 'schooly' at first that I really wondered if we'd done the right thing. It was only the fact that there wasn't an alternative at the time, that kept us going. Originally, we intended to home educate only until we'd found a suitable secondary school. But we couldn't find one - not mainstream anyway - so he's still at home three years on. We are still planning to look at schools, but they will need to be specialist ones. Ds couldn't cope with a large junior school - there is no way he could handle a mainstream secondary, and he will therefore need a statement. At least now I know that if we decide to go down this route and it doesn't work out, that home education really works for him. Hope this helps. Home education doesn't have to be a final decision. Your son, and schools, can change. It's what he needs now that's important. cb

There are quite a lot of companies with no specific educational expertise running schools - and have been for some time. The idea is that the school is a business - it just happens to be in the business of teaching children. The educational expertise is supposed to come from the staff and governors... cb

I went to a superb primary school in the 1960s. Draughty Victorian building, infant class in a temporary hut, heated by a coke stove that was so hot when it was lit you couldn't stand near it. Outside toilets, hand-made work cards, stationery and equipment often cadged from parents and a local printer. Hot water only in one cloakroom. But the education was second to none. cb

Our LA complains that it can't compel schools to do anything as it is. Schools with increased independence will simply cherry-pick pupils likely to do well academically and children with SEN will fall through the gaps as they always have. There seems to be a very prevalent view amongst politicians of all persuasions that what you need for all children to do 'well' is 'good' teaching. Few of them seem to be wondering what might be stopping some children from doing well, or what good teaching actually means in practice. cb

In that case, how can gluten, a chemical minding its own business, be 'evil'?

My son, who has AS, stopped being tired and floppy when we switched to goats' milk because we thought cows' milk might be triggering an allergy. He didn't stop sniffling, but it had a dramatic effect on his energy levels. I then found out that one of the types of casein in cows' milk is suspected of having an opiod effect. cb

Sensory processing is a physiological process and so is susceptible to change if other physiological changes take place - people can't stand loud noises if they've had too much alcohol for example, or bright lights if they are ill. As for the connection with 'mental health problems' - it would depend what caused, and how you defined the mental health problem. Anxiety and depression are also caused by physiological changes, so there are a number of ways in which sensory processing and mental health could be linked. cb