coolblue
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Posts posted by coolblue
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When my son was little, he and one of our cats used to fight over cardboard boxes. They both wanted to sit in them. No idea whether he was playing imaginatively or not, he wasn't very verbal at the time, but he and the cat used to get very annoyed with each other.
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I think that definitive dx at a very young age would lead to MORE specialised and individualised services, not fewer, as all professionals involved would be sure they were dealing with the real thing and we would not have to jump all the parenting/MH/paranoia/physical issues hoops first! Plus, the support would start so much earlier so in theory, children would need less anyway.
My second reply to Kez
- sorry, Kez, not getting at you, just picking up on this point.Because there are diagnostic criteria for autism, and one can get a diagnosis, it's tempting to see autism as a single brain condition that varies a bit between individuals. It isn't. It's a set of characteristics that can be caused by different things in different individuals. It's a bit like a lot of small rivers flowing down different valleys into a big river that flows into the sea. Each of the small rivers (causes) is different but ends up as the big river (the behavioural characteristics we see).
So we know that some brain damage can lead to autism, Fragile X causes autism, Rett syndrome causes autism. Until we have found out all the different things that can cause autism (the symptoms) we aren't going to be able to pick it up in very young children.
It's unlikely that we'd be able to pick it up on a brain scan in young children anyway. The brains of adults with autism are 'different' because they have had a lifetime of 'different' behaviours. Many of the brain differences will not have developed in young children even if it's a brain abnormality that's causing the difference.
Hope I haven't made this more confusing.
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in all honesty, I find it hard to understand why ANYONE would not want a simple, definite dx process to be available?
Because 'autism' is a descriptive term for a *spectrum of symptoms*, not a medical condition with clear parameters. In addition autistic characteristics are widely agree to have a variety of causes.
The reason MRI scans are currently used as part of the diagnostic procedure is to pick up brain abnormalities caused by brain damage, disease or abnormal development that might be the cause for the autistic symptoms.
Children's brains develop in response to environmental information and in response to how the brain is used. So abnormal behaviour can be caused by abnormal brain structure, AND abnormal brain structure can be caused by abnormal behaviour. A child with persistent severe impairments in social interaction and communication, will have abnormal frontal lobe structure and/or function regardless of the cause of the behaviour.
If the autistic characteristics are caused by, say abnormal neurotransmitter levels, you are not going to be able to find this out by looking at a brain scan.
And because the symptoms of autism are very varied, you are going to see a wide range of differences in brain structure. A whole range of different patterns of brain functions have been found within scans done on autistic people. We will end up with exactly the same is/is not arguments over whether a scan shows autism or not that we have with a subjective diagnosis.
The only advantage is that diagnosis might be quicker and cheaper in some cases than having to arrange several multi-agency team meetings.
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Now there's an inclusive fundraising idea!
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Yes I don't think it's Polly Tommey's views that have caused consternation, so much as her strategies, so to speak.
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Not sure how this is going to help with diagnosis. If someone meets the behavioural criteria for autism you could be pretty sure that the parts of their brain that process social and communicative information are not going to be 'normal'. Either because there is something different about the brain tissue, or because the person hasn't been functioning 'normally' in respect of their social and communicative interaction. So it's hardly a surprise if people who meet the diagnostic criteria show similiarities with brain structure/function.
There's also the issue of the developing brain of the child; clear differences in adults might not be quite so clear in children. Not to mention the issue of 1)persuading a PCT to fund MRI scans 2) getting a child with ASD into an MRI scanner and persuading said child to stay there for long enough to do a scan and 3) what treatment they are going to get if diagnosed.
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I found a video of her presentation to the European parliament but I couldn't get it to play properly. Now it's disappeared. Anyone know if/where I can find it?
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Just trying to figure out, since there is general agreement that ASDs are organic in origin (genetically determined/physiologically mediated), what would happen in the case of a child who has the genetic basis for a diagnosis of an ASD, but also, due to upbringing, develops further problems with attachment? How could you separate the two? And how would you distinguish between a problem with attachment and an attachment 'disorder'?
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You'd probably be better off reading Donna Williams' books 'Nobody Nowhere' and 'Somebody Somewhere'. She gives a very readable, coherent account of how the world looked to her as a child, and how her perception changed as she grew older. But bear in mind that a diagnosis of autism is the identification of a broad set of behavioural characteristics, and that those characteristics can vary widely between individuals.
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Hi.
It is not possible to have a dual diagnosis of AS and attachment disorder.The individual making the diagnosis is required to make a professional decision as to whether the difficulties observed are due to attachment disorder or AS but both are not allowed together.
Karen.
I don't think it means the two diagnoses are not 'allowed' to occur together, does it? Autism spectrum disorders are diagnosed by their symptoms. If someone's behavioural characteristics meet the criteria for a diagnosis of the autistic disorder AND those characteristics cannot be explained by the existence of the other conditions listed (or another list of chromosomal disorders) then a default diagnosis of AS or ASD or whatever, is made. This isn't a diagnosis in the sense that identifying a specific bacterial or viral infection is a diagnosis, it's a default diagnosis that says 'this person shows these behavioural characteristics but we can't identify a cause.' I can't see why someone couldn't show the symptoms of an ASD and an attachment disorder.
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We're currently trying to get ds back to school after three years home education. We've just applied for a statutory assessment (ds doesn't have a statement.) The inclusion service said that ideally he should be assessed in an educational setting, and suggested the tuition centre for children out of school for medical reasons. But the centre is almost full with Y10 & Y11 kids and ds is only 12. So he has a home tutor 2 hours a week now, to do a teacher assessment. The EP will assess at home.
We've had some detailed conversations about precisely what they are assessing. Academic ability could be assessed more or less anywhere if the child is comfortable, but ability to cope with a school environment would be quite difficult at home. The tutor says she's assessing his ability to work with another adult.
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Hi Mariek
My son (diagnosis of ASD) has been found to have abnormal eye movements. He gets nystagmus (wobbly eyes) when he lifts his head up if he's been looking down. I've seen this in other autistic children. Nystagmus can occur if there are balance problems, and a lot of children on the autistic spectrum have problems with balance. He'd had several eye tests but this wasn't picked up until we went to see Ian Jordan http://www.jordanseyes.com/
My boy also has an auditory processing problem that wasn't identified in several hearing tests, so you need to make sure that any optometrist or audiologist you see has experience with children with developmental disorders.
In my son's case I don't think he has auditory and visual problems as well as autism, but he has autistic characteristics - and therefore a diagnosis of autism - because of his visual and auditory problems. They explain all his problems with social interaction, and communication and learning difficulties.
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There is nothing at all about special needs provisions, or specialist schools revision or Home Education
I also think there is in many of the issues concerns especially for parents of sen children.
JsMum
The Green Paper on SEN is due out next month. That's probably why there's no mention.
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That's awful. I'm sure it can't be ethical to discharge a patient on those grounds if the patient relies on the practitioner for medication. I'd get in touch with PALS ASAP and ask their advice.
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Hi
I trained as a primary teacher a long time ago, and I'm currently home-educating my son, with a diagnosis of ASD, auditory processing problems, hyperacusis and eye movement abnormalities.
Interestingly, my experience of schools is very different to Sally's. When I was at school, and when I was training to teach, there was a lot of movement in the classroom, and lots of activities going on simultaneously at least at primary level, whereas now I keep hearing that Ofsted like to see a quiet, calm classroom. Depends on the school, I suppose.
A few observations.
1. The 'learning styles' idea, is based, as far as I can find out, on neuro-linguistic programming, which has not quite been discredited as a theory, but is certainly one that lacks a substantial evidence-base. I've trawled for solid evidence for the 'learning styles' model a number of times, and can find very little. From what I've seen, most children have a 'learning style' not because they *prefer* it, so much as because the other learning styles are even more difficult for them to use. True, my son is a 'visual learner', but only because he has BIG problems with auditory and kinesthetic learning.
2. Educational research, in my view, often leaves much to be desired. It's frequently not specific enough. I've lost count of the number of studies I've read where the *mean* results show an improvement in test scores or reading age or whatever, but when you look at the spread of scores, you find that 80% of children improved significantly, and 20% had very low scores. Presenting scores as mean values can be quite misleading, if the results of 20% of the children are being masked by those of the 80%.
3.I taught a long time ago, and I've been out of touch with the school system for many years. One thing that struck me about my son's schools, was the number of times I've been told "yes, but one day he will have to go out into the world", as if "the world" was a much nastier place than school, and they were being easy on him. This idea is often used as a reason for children being expected to cope with anything the teacher cares to throw at them. In my experience, this view of the workplace couldn't be further from the truth. Most of the places I've worked in have been more like an extended family, offering a lot of support, co-operation and protection, and a lot of flexibility.
4.I've also noticed that a lot of teachers have never worked in any environment other than school, so I don't know how they know what it's like outside. Some wouldn't get away with their behaviour in any other environment. But because they have little contact in school with adults other than school staff, and because children don't have much experience at standing up for themselves, it's easy for a culture of 'because I say so' to arise. Would like to point out that this does not characterise all schools. My children have attended some excellent ones. But I've come across the 'because I say so' culture so many times, I suspect it is widespread.
5. Because SEN courses have been phased out over recent years, there is less and less SEN expertise in the education system, for mainstream teachers to draw on. The TES forum is a mine of useful information regarding SEN expertise. It's also a place where you can tell just how little information most teachers have about it, and how many of them are thrown in the deep end with insufficient resources and support.
I hope some of this helps. Basically, I think you are perfectly justified in having concerns about what happened and I agree that schools should be aware of the range of sensory issues in the population as a whole.
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Hi dana
Young children (usually around 3-5) often ask questions like this because they are trying to make connections between isolated bits of information they have picked up. To make sense of the world. They would know that leaves are 'dead' but they wouldn't know if dead leaves are the same type of 'dead' as animals or people. Because children with autism spectrum disorders often have problems with auditory processing and/or receptive speech, they quite often miss a lot of information that most young children pick up effortlessly very early on and have to fill in the gaps when they are older. Your son clearly has some concepts around the idea of death, but didn't see how leaves fitted in with those ideas. Perfectly sensible questions when you think of it in that way.
My son is always asking questions about things I assumed he would know about, like 'what's does washing up mean?' or 'where do stamps come from?' even though he could give you a run-down on Nobel prize-winning chemists. He had a number of ear infections when younger, so I suspect, with hindsight, that he might well have had quite a few episodes of temporary deafness and simply missed this kind of information. Even though he has helped with washing dishes and been to the post office more times than I can remember.
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I'm afraid I would have pointed out to the parent that they were talking about my child. I can think of a few more things I would have liked to have said, but I have learned to hold my tongue. So sorry your daughter's performance was ruined for you.
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Yes but it didn't tell me anything I didn't already know/couldn't find out from internet. Supportive in the sense of knowing someone else had gone through it and seeing what strategies they had used.
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There are other psychiatrists. If you're worried, ask to speak to someone else.
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A bit OT, but I recall complaining about ds being in the swimming pool too long during a school swimming lesson (it was a double-length lesson that parents hadn't been told about) because of his problems with thermo-regulation, and being told that if he came out of the water before the end of the lesson, the other children would notice he was 'different'. As if they hadn't noticed his inability to make himself understood, his complete inability to remember where he was going, his running round in circles pounding his fists together etc etc.
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Well, quite. Why do you need to know now? What do they expect you to do about it?
Schools don't ring parents to tell them a child's thumped another child, or bumped their head. For goodness' sake.
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I would have said exactly the same when my son was at the 'cot' age. Now he's 12 I know exactly what makes him tick. I feel I understand him better than I understand any other member of the family. Doesn't mean we feel the same way about life, but I know where he's coming from.
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Phew! You don't have to think about it till after Christmas.
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Yes, but did the assessment of numeracy/mathematics (I won't go into a debate about definitions of the two here...
) really assess attainment and gains in mathematics i.e. was this a valid test? The test, as far as I can make out from the reports (I haven't read the original research so I may be missing something), involved people learning abstract symbols which represented different numbers and then answering questions about which of two presented symbols was bigger (i.e. which represented a bigger number). Is this not more about either memory or about symbolic processing (and so more related to language acquisition)? Surely the mathematics involved, comparing two numbers (once you've translated the symbols) isn't being improved because this is already at a very basic level? Why not use a standardised mathematics test of which several exist? Why not use the number system that the participants would be using in their everyday lives?I think your point about definitions is key here. Although the findings have implications for mathematics, numerical ability, spatial ability, memory and symbolic associations, those are secondary issues. The point of the paper (thanks to Fluffy for the link btw) was that a non-invasive technique could improve a specific cognitive process. Whether that process is involved in mathematics, numerical ability or symbolic associations would depend on how you define those things. The problem with using an extant number system or a standard mathematical test is that the operations involved are complex and it would be difficult to isolate the variables. Using a simple, novel abstract task gets round those problems.
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MRI dx on its way?
in General Discussion
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The fundamental problem is that everyone's brain, like everyone's behaviour, is unique. And autistic brain differences, like autistic behaviour are likely to fall onto a spectrum of severity. Unless there is clear evidence of brain damage, or clearly abnormal brain development, you are still going to end up with MRI scans that doctors are umming and ahhing over in exactly the same way as they umm and aah over behaviour. The autistic participants in the research into MRI scans and autism were adults and clearly showed autistic characteristics - it would have defeated the object of the research if the experimental group had diagnoses over which there was debate. Results from young children's brain scans are likely to be less clear and more difficult to obtain.
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