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article about scan to diagnose

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No. No magic wand... But i find the attitude of this woman infuriating 'Try getting MY kids into an MRI machine' etc...

 

And this:

 

Parents enraged by the scepticism of schools and social workers will be delighted by the possibility of scientific proof that their child's problems are not a passing phase, or the result of overindulgent parenting

 

As though autism and overindulgent parenting are somehow mutually exclusive :wallbash: And what, as I highlighted in the OP, in those cases (whatever percentage that might turn out to be) of parents who find their child's scans don't offer scientific proof that it's not a passing phase or the result of overindulgent parenting? Very little in the way of 'delight' there, I suspect.

Autistic children are no less likely to have overindulgent parents than any other children. IMO, reactions to their dx actually make it more likely. If this new technology helps to establish that conclusively, I for one will see it as a 'breakthrough'.

 

L&P

 

BD :D

 

 

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Having a son who has had an MRI, the only way it was achieved was by giving him a GA. Restraining him so they could get the needle in and then seeing his tiny motionless body wheeled away on the trolley is one of the most harrowing memories I have. I would make the same point as Charlotte Moore about the difficulty of expecting a child to just submit to the procedure.

 

Having also been through battery after battery of testing to be told the results were 'normal' when clearly everything was not normal I think parents are not generally seeking validation of their preconceptions, but seeking some answers. I didn't appreciate the strain of living without a diagnosis until it was removed. Every 'results' consultation we went to up to that point we were bracing ourselves to hear whether his condition was terminal. Autism was a relief. He was nine years old.

 

Anything to speed up the process is welcome. 90% (and hopefully more) getting an accurate diagnosis is something to be celebrated. The focus on weeding out of 'false claims' seems bizarre TBH.

Edited by call me jaded

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Having a son who has had an MRI, the only way it was achieved was by giving him a GA. Restraining him so they could get the needle in and then seeing his tiny motionless body wheeled away on the trolley is one of the most harrowing memories I have. I would make the same point as Charlotte Moore about the difficulty of expecting a child to just submit to the procedure.

 

Having also been through battery after battery of testing to be told the results were 'normal' when clearly everything was not normal I think parents are not generally seeking validation of their preconceptions, but seeking some answers. I didn't appreciate the strain of living without a diagnosis until it was removed. Every 'results' consultation we went to up to that point we were bracing ourselves to hear whether his condition was terminal. Autism was a relief. He was nine years old.

 

Anything to speed up the process is welcome. 90% (and hopefully more) getting an accurate diagnosis is something to be celebrated. The focus on weeding out of 'false claims' seems bizarre TBH.

 

 

Focus? :unsure: I commented on many aspects of this research in the other thread... In this one i happened to bring it up in response to the paragraph in the guardian about parents being able 'prove' that their child's behaviour wasn't the result of 'overindulgent parenting'. So not so much a 'focus on weeding out false claims' as a comment on a factor which I find disturbing - the use of autism as a catch-all explanation for every negative behaviour enacted by a child... It was the journo who seemed to see confirmation of a dx as a 'validation', not a suggestion I put forward. so, nothing bizarre there then, TBH...

TBH my objection to the MRI comment in the article wasn't because i underestimate the difficulties that might be encountered getting some autistic children into the machine (I think my son, for example, would see it as quite an adventure), but purely because it seemed a bit weedy and 'snitty' to mention it when you consider the potential benefits. Nowt to do with MRI, but i've seen my son prepped (equally unwillingly) for two surgeries, and seen his 'tiny motionless body wheeled away'. And, yes, it was upsetting both times. I cried gurly tears on both occassions, I'm not ashamed to admit, but certainly the reasons for them, and the benefits to be gained, outweighed any emotional distress I might have suffered from the process.

 

L&P

 

BD

Edited by baddad

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Okaaay.

 

Let's not get into a debate about whose life is the more harrowing, because obviously it's yours and I have been extremely lucky.

 

I still count breaking into a sweat to hold down a child who'd turned into an eel and was screaming primeavally whilst the anestheatist did his stuff (whilst apologising about how badly it was going) and then watching him go off to have a scan that you'd been told might reveal a brain tumour pretty harrowing. Call me lucky.

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Ah... Top Trumps. Sorry, I didn't realise....

For the sake of clarity and to avoid any confusion, I edited my last post while CMJ was posting. Sorry, completely unintentional (obviously, as i don't have second sight!).

No, I would agree that having a child scanned for a suspected brain tumour would be harrowing. However, that scenario bears no relation whatsoever to the one under discussion - a child having an MRI scan to look for possible indicators of autism. In fact, mentioning a procedure with such a potentially devastating outcome in the context of a more routine scan seems, if you'll excuse the paraphrasing, somewhat bizarre, TBH.

 

L&P

 

BD

Edited by baddad

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Baddad I am talking about the diagnostic process that we went through for autism, as it was in the late 90s, early 2000s. We had to go through a series of NHS waiting lists, starting with hearing tests and culminating in EEGs and MRIs. We had a child who couldn't walk and couldn't talk at three and a half. The neurologist warned us that it was a case of finding something but he couldn't say what, but not to rule out a tumour. He was just walking by the time he had the MRI and the scan showed up a cyst ( a Dandy Walker cyst) that was part of the reason he had problems but absolutely not the end of it. They couldn't tell what the prognosis was because they didn't know what his condition was. By this time he was in his special school and we had no reason to seek a further label and besides the next diagnostic step offered was three days at what's now the Lorna Wing Centre but we were all diagnosed-out by then and said we couldn't take any more.

 

Roll on a few more years and a transfer to secondary was beginning to worry me so we went back and asked for an ASD assessment. By this time things had moved to multi-disciplinary assessment and everybody had had their training so it was a simple CARS with the clinical psych and a chat with the paed and a confirmation by letter.

 

That is a fairly common diagnostic route for children of my son's age who are on the severe end of the spectrum. Some got there quicker than us, some didn't get there at all and stopped at the 'global developmental delay' stage.

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Baddad I am talking about the diagnostic process that we went through for autism, as it was in the late 90s, early 2000s. We had to go through a series of NHS waiting lists, starting with hearing tests and culminating in EEGs and MRIs. We had a child who couldn't walk and couldn't talk at three and a half. The neurologist warned us that it was a case of finding something but he couldn't say what, but not to rule out a tumour. He was just walking by the time he had the MRI and the scan showed up a cyst ( a Dandy Walker cyst) that was part of the reason he had problems but absolutely not the end of it. They couldn't tell what the prognosis was because they didn't know what his condition was. By this time he was in his special school and we had no reason to seek a further label and besides the next diagnostic step offered was three days at what's now the Lorna Wing Centre but we were all diagnosed-out by then and said we couldn't take any more.

 

Roll on a few more years and a transfer to secondary was beginning to worry me so we went back and asked for an ASD assessment. By this time things had moved to multi-disciplinary assessment and everybody had had their training so it was a simple CARS with the clinical psych and a chat with the paed and a confirmation by letter.

 

That is a fairly common diagnostic route for children of my son's age who are on the severe end of the spectrum. Some got there quicker than us, some didn't get there at all and stopped at the 'global developmental delay' stage.

 

But that's not what the article is talking about, is it? The article was commenting on what is, apparently, a major step forward in the diagnostic process for autism, and the 'journalist' (my inverted commas) resorts effectively to wedging her tongue between her bottom teeth and lip and going 'errrrrr... well they should try getting one of our kids to sit still for a scan'... it's pathetic, completely pathetic. And it has absolutely sweet fanny adams to do with the scenario you are outlining of a mother watching her child being anaesthetised for an exploratory scan looking for a potentially life threatening malignant tumour - hence my comment about 'top trumps'. If you do think the two scenarios being outlined equate to the same thing that's fine - we'll agree to differ. But that said, I don't think for a single moment that the MRI scan mentioned in the article has any connection with tumours whatsoever, and I'd be completely surprised if it was ever considered a necessary procedure for diagnostic reasons at the severe end of the spectrum at all.

 

L&P

 

BD

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The 'journo' as you call her is author of 'George and Sam' and it's one of the very many opinion pieces that the Guardian commission. If you're familiar with Comment if Free the pieces are designed to promote a response. Cif is like that.

 

Secondly I'd say the difference between the two ends of the spectrum are starkly revealed in this thread. I see the MRI as one of the many tests that are offered low functioning children to find out the extent of their difficulties - it's still an option offered now and, yes, I would expect the neurologist to outline what they expect to find. So for the low end a simple MRI can be expected to reveal anything.

 

It's not all behaviourist at this end. There are some real physical and learning difficulties too.

Edited by call me jaded

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The 'journo' as you call her is author of 'George and Sam' and it's one of the very many opinion pieces that the Guardian commission. If you're familiar with Comment if Free the pieces are designed to promote a response. Cif is like that.

 

Secondly I'd say the difference between the two ends of the spectrum are starkly revealed in this thread. I see the MRI as one of the many tests that are offered low functioning children to find out the extent of their difficulties - it's still an option offered now and, yes, I would expect the neurologist to outline what they expect to find. So for the low end a simple MRI can be expected to reveal anything.

 

It's not all behaviourist at this end. There are some real physical and learning difficulties too.

 

Sorry, just not understanding what you're trying to say(?) :unsure: If you're saying that an MRI scan might be for different reasons at different ends of the spectrum then I'd agree - but in either case, snitty comments about the difficulties of conducting a scan seem pretty weak to me. It's like them finding a cure for cancer and then people whinging because it means they have to have an injection! Whether the reason for the scan is to confirm a dx or to look for the extent of a child's difficulties or to look for something else like malignant tumours the benefits of the scan far outweigh any minor considerations like keeping the child still. It may be a 'real' issue, but in context it's a moot point and completely irrelevant. Or to put that another way, 'snitty'. As, quite frankly, is the observation that 'it's not all behaviourist at this end. There are some real physical and learning disabilities too', despite the fact that to a large extent I agree with you...

Putting that last into context, I totally agree that the problems faced by people at opposite ends of the spectrum (and their carers) can differ hugely. I've actually posted along those lines many times in the past - about parents of HFA or AS children 'appropriating' the problems of more profoundly affected autistic people to justify unreasonable behaviours in their own children. But that doesn't mean i think there are no behavioural or physical or medical issues at the HF/AS, which is what your very polarised view seems to be suggesting(?)

 

I've never read 'George & Sam' and on the strength of this article wouldn't want to. If the level of writing is so poor that the writer can't see a direct contradiction in a piece she's written of only 600 or so words then the chances of her writing a book that's in any way coherent seem minimal...

 

She writes about parents being 'delighted' at finally obtaining proof that their children's problems aren't just a phase or a consequence of 'overindulgent parenting'.

She then goes on to describe a scenario where her children are being bribed with jellybeans to comply with a test. She then tells us that they 'returned home triumphantly, stuffed with jellybeans but unscanned'... That to me does indicate 'over-indulgent parenting', because quite clearly she has rewarded, or allowed the children to be rewarded, for not complying with the test! If she is so feckless that she can't understand the basic role of the 'carrot' in a carrot and stick behavioural management routine then I doubt her insight into the wider implications of autism would be particularly instructive. In a similar vein - what a waste of the researchers time and resources; purely because she doesn't understand her own kids enough to work out that they wouldn't willingly comply and that she lacked the parenting knowhow to overcome that reluctance. :rolleyes::shame:

 

I was just about to apologise to Zaman for taking the thread off topic, but then realised this is for the most part 'on topic', because the topic is the article rather than the research! :lol: But having said that we do seem to have come full circle:

 

http://www.asd-forum.org.uk/forum/index.ph...st&p=293360

 

L&P

 

BD

 

 

 

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As for what I'm 'trying' to say, it's quite simply that MRI scanning has been part of the diagnostic process for some time, and that the way it is achieved is to knock them out cold, not entirely safe and emotionally traumatic, speaking from experience.

 

To call my account Top Trumps surpasses any snittiness.

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As for what I'm 'trying' to say, it's quite simply that MRI scanning has been part of the diagnostic process for some time, and that the way it is achieved is to knock them out cold, not entirely safe and emotionally traumatic, speaking from experience.

 

To call my account Top Trumps surpasses any snittiness.

 

sorry - just typed a longer answer and lost it.

 

In brief:

it's quite simply that MRI scanning has been part of the diagnostic process for some time

 

Since when? I don't know any autistic kids for whom MRI scanning was part of the diagnostic process for autism. They did not know what was wrong in your son's case, and the MRI was an exploratory procedure to find out. That's a completely different thing.

Allowing that MRI scanning has become part of the diagnostic procedure and i'm just not up to speed on the latest developments, why is the scan achieved by knocking them out? Surely that would only be necessary in cases where children would not cooperate willingly? I'm sure there are some for whom that would be necessary and I'm sure there are some for whom it would be deemed necessary by mum and dad/carers etc, but of the many, many autistic children i know/have known I can only think of a very small number where it would be necessary. I think in the case of very young children then scans would be more problematic, but i don't think that would be a purely 'autistic' problem, and suspect that an NT three year old being scanned for other problems would probably present an equally tricky scenario...

 

In the event that MRI scanning does become part of the dx process, then the benefits of confirmed dx would certainly outweigh the drawbacks for that number (?) of autistic children who needed a GA to undertake the scan and where there was 'reasonable doubt' regarding the accuracy of observational diagnosis.

 

I've already acknowledged - several times - that having a child examined for a potentially life threatening malignant tumour would be (at the very least) a harrowing experience for any parent, but that would be the case regardless of whether an MRI scan was involved and/or whether achieving that scan involved a G/A. If you want to comment on the newspaper article and my comments on that then i'm happy to do so, but if you're posting purely to project your own experiences onto the situation described in the article then any further comment seems pointless, because we are not talking about the same thing.

 

L&P

 

BD

Edited by baddad

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Baddad the diagnostic process for autism is that you eliminate everything else first, so MRIs have been part of that process where appropriate for a very long time. It's used to eliminate tuberous sclerosis, etc.

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Baddad the diagnostic process for autism is that you eliminate everything else first

Is it? Certainly not the case with Ben, or anyone else I know. And where does that leave private diagnosis, for example? I've never heard of anyone seeking a private dx being MRI scanned or referred for MRI scans(?). TBH I think a diagnostic process that did seek to eliminate everything else first (well, not everything, but within reason, iyswim) would be brilliant, because at the mo autism seems (to me) to be becoming something of a 'catch all' diagnosis in the same way that ADHD and dyslexia did... i think I might have mentioned that somewhere earlier(?)...

 

MRIs have been part of that process where appropriate for a very long time. It's used to eliminate tuberous sclerosis, etc.

 

That makes perfect sense. Where appropriate. But nothing in this article - or the original research article - was about eliminating other potential causes. I really don't think your son's route to dx was a 'typical' one, even for children at the more profound end of the spectrum. This article actually ends on a note confirming that:

 

But for the foreseeable future, diagnosis will continue to rely on a back-up of behavioural observation by trained professionals.

 

and this was also highlighted in the two original articles (the BBC one and Sky News or whatever it was). If MRI was already part of the diagnostic criteria - even if used with any regularity to eliminate everything else as you suggest - I'm sure it would have been mentioned somewhere along the line. Certainly if there was any statistical evidence to back up the assertion that getting autistic kids into MMR machines was intensely problematic (and there would be, if MRI was regularly used within the dx process, surely?) then any writer worth their salt would have made some reference to it?

 

TBH this is just another 'wooslum bird' situation - I think it's snitty to raise a minor issue like the practical problems that may arise for some in getting a scan done when considering the far wider value of a relatively simple but potentially 90% accurate scanning technique, and you don't think it's snitty. Fine. Agree to differ...

 

L&P

 

BD

 

 

 

 

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Well I'll just do the short answer.

 

The very first stage of diagnosis is a general development assessment (GDA) which (I'm sure you know) looks at the developmental history. If your child wasn't showing symptoms of another neurological condition there would be no need to eliminate it, would there?

 

I don't think I said MRIs were used routinely, but that if there were other conditions to be ruled out then MRIs were one of the diagnostic tools that for complex cases are used and have been for some time. I suspect that Charlotte Moore's and many another's child[ren] will undergo GA, with its inherent risks, to access MRI as the benefits of having a diagnosis validated (in a scientific sense) are many.

 

Though if there is a snittiness test to be gone through first, perhaps you should publish your definitive guide. Otherwise I might be thinking Charlotte Moore was merely expressing reservations about the practicalities based on a prior experience and that would never do.

Edited by call me jaded

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Though if there is a snittiness test to be gone through first, perhaps you should publish your definitive guide. Otherwise I might be thinking Charlotte Moore was merely expressing reservations about the practicalities based on a prior experience and that would never do.

 

I think 'snittiness' is probably different for every individual - one man's snit is another man's, erm, something that's not 'snit' but sounds very clever when coupled with it in a meat/poisonish sort of way. A good example of just how personal 'snit' would be the one above - my 'snit' is your 'practicalities based on personal experience' (if you can think of a nice, snappy single word defintion for that we're in business for a 'meat/poison' stylee soundbite!). In that respect I guess, sadly, there can be no 'definitive guide'...'

Anyhoo - lets just hope the kids enjoyed the gutful of jellybeans they were rewarded with for not doing what was being asked of them. From personal experience of seeing kids rewarded for not doing what is being asked of them I feel sure they did, bless 'em. 'spect it took a good dose of melatonin to get them to sleep after that little sugar rush, eh? ;)

 

L&P

 

BD :D

Edited by baddad

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No need to apologise for highjacking the thread. I have found both your comments interesting.

 

There was a second Comment is Free article on the subject by Sally Bercow.

 

http://www.guardian.co.uk/commentisfree/20...only-first-step

 

I have to say, I only skim read what she said, and got quite caught up in the readers comments at the bottom. I then had to look up who she was (politico) as I had no idea. I found it hard to unpick what she was saying as a concerned parent, and what was political posturing.

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