MRI dx on its way?

[KezT]

From America, so it's probably best to ignore the somments

 

MRI DX study

[baddad]

From America, so it's probably best to ignore the somments

 

MRI DX study

 

yes. some lovely comments there!

 

There have been a few reports of this nature recently, and I think anything that can clarify what has (IMO) become a ridiculously wide and increasingly 'casual' diagnostic process has got to be a major breakthrough. Sadly, I think that odd six percent margin or doubt is going to come in for one hell of a battering, and that's always going to be the problem with any diagnostic 'breakthrough'.

 

L&P

 

BD

[KezT]

yes. some lovely comments there!

 

There have been a few reports of this nature recently, and I think anything that can clarify what has (IMO) become a ridiculously wide and increasingly 'casual' diagnostic process has got to be a major breakthrough. Sadly, I think that odd six percent margin or doubt is going to come in for one hell of a battering, and that's always going to be the problem with any diagnostic 'breakthrough'.

 

L&P

 

BD

 

I am hopeful that there will be a "proper" dx procedure one day in the not too far distant future. I'm not terribly knowlegable about such things, but my PhD in neuroscience & Ed Pysch sister swears that there is a physical difference in autistic v NT brains, so it *ought* to be dx-able.....

 

My littlest one had an MRI as part of the BASIS study when he was just 4mths, and is still part of the study, so hopefully if he does need a dx, he will get it earlier than my older one, who was 7 - despie being quite severe (although not speach delayed).

 

 

I also think that a "medical" dx would not only stop the fashionable or just incorrect dx's, but would give more validity to the dx of ASD in general - I know far too many people who don't believe in HFA with the ridicuous reasoning thatwe're all a little bit on the ASD spectrum

[coolblue]

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.

 

cb

Edited December 3, 2010 by coolblue

[Karen A]

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.

 

cb

 

I agree.I have a friend who has a son with ASD.An MRI scan was required as part of diagnostic assessments.I think two attempts at sedation with anything the paediatricians considered worth using which resulted in a drugged but stroppy child.Final sucess under general anaesthetic which although successful I would not agree to for my lads without good reason.

 

 

Karen.

[KezT]

But the baby MRI scan was really clever

 

The appointment was made at a time I thought he would be tired, when I got there I had a nice quiet, dark room where I could feed him and get him off to sleep. Once asleep we put him on a bean-bag type thing, and they sucked all the air out of it so it held him snugly. They also put some really cool headphones on him so they could play music (which we had been given a month earlier to get him used to it) during the scan, so the noise didn't startle him

 

That way he was wheeled into the MRI, and stayed perfectly still for 45mins

 

Of course, he doesn't have the sensory isues that my older DS had - he wouldn't be swaddled, wrapped in a blanket, held tightly or even go in a pram/moses basket, so I don't know if the bean-bag "swaddling" would have woken him up? But TBH, if a 4 mth old baby is sound asleep, then they will sleep trough quite a lot, so he probably would've been OK. It's trying to get toddlers and older children to stay still which is the problem, if you can Dx as a tiny baby, it's much better all round

[baddad]

I agree.I have a friend who has a son with ASD.An MRI scan was required as part of diagnostic assessments.I think two attempts at sedation with anything the paediatricians considered worth using which resulted in a drugged but stroppy child.Final sucess under general anaesthetic which although successful I would not agree to for my lads without good reason.

 

 

Karen.

 

Hi Karen -

I think confirming the diagnosis would be a good reason. I also think it depends how the child is introduced to the MRI. Some kids might fight against it for 'sensory' reasons or fear of the unknown, some might purely to be oppositional, but many, I'm sure, would see it as quite an 'adventure' if presented as such. Either way, I think as a last resort a general anaesthetic to achieve confirmation of a 'wooly' dx - the kind kez and I have indicated as our major concern regarding the dx process - would be worthwhile, for child and parent alike.

 

L&P

 

BD

[Karen A]

Hi Karen -

I think confirming the diagnosis would be a good reason. I also think it depends how the child is introduced to the MRI. Some kids might fight against it for 'sensory' reasons or fear of the unknown, some might purely to be oppositional, but many, I'm sure, would see it as quite an 'adventure' if presented as such. Either way, I think as a last resort a general anaesthetic to achieve confirmation of a 'wooly' dx - the kind kez and I have indicated as our major concern regarding the dx process - would be worthwhile, for child and parent alike.

 

L&P

 

BD

 

I have not explained myself well.

I would have no problem at all with an MRI scan to confirm a wooly dx.Compared with three years psychotherapy it would be an easy outing.

I did say ''without good reason'' for Ben there might be a good reason.Since his brother is 15 and certainly does not have AS there would be no clear justification for sedation and an MRI scan.

Incidently my husband had an MRI scan a few years ago when a GP thought he might have a brain tumour and he did not enjoy it much either.

 

However I understood that the idea might be to MRI scan vast numbers of children without clear indications of AS perhaps on the basis that there is a sibling or relative with ASD.

 

 

 

Kez also mentioned young babies where most professionals would have no idea about diagnosis woolly or otherwise.Kezs baby was 4 months old....hardly old enough for assessment for any diagnosis.

Yes 4 month old babies are easy to scan because they go to sleep.By definition any child with a ''wooly'' diagnosis of AS is going to require an awful lot of work to get them into an MRI scanner and still for however long it would take.

 

Ben once had a piece of popcorn in his ear which required three hospiatal trips a GA and a day in hospital to remove it...for a two minute job that only required him to sit still for a few minutes.

 

I may not have have a PHD but I have many years nursing experience which involved accompanying patients to hundreds of procedures and running a hospital admissions room.

 

There are recognised contrandications for GA and MRI scans are not without any risk.They are also expensive and require interpretation by a very highly qualified radiologist.I cannot imagine any GP being prepared to refer for an MRI scan for ASD assessment on mass for children with no clear symptoms and feel it is justified when many will not currently even refer to CAMHS where there are clear difficulties.

 

A lady in the paper today with severe hip pain had a hip replacement cancelled weeks before the operation because her PCT do not consider her a priority.Elsewhere in the media people with end stage dementia are being reviewed and moved from continuing healthcare to SS because they are so far advanced in illness to no longer be considered challenging.

I cannot see any GP [because it will be a GP consortium rather than a PCT by the time this research comes to fruition here if ever]feeling in this climate there is any justification for MRI scans without very clear justification.

 

In any case the test was on 30 individuals in America.30 is hardly a scientific sample.

If early identification increased the chances of early intervention I might feel more positive but my LA is currently reducing all the intervention they can get away with.I dream of any level of intervention for those currently diagnosed.

 

There again perhaps MRI scans might confirm a large number of so called ''woolly diagnosis'' as Ben's was eventually confirmed.If that increased provision for this group then that might leave my opinion open to review.

 

 

 

Karen.

Edited December 4, 2010 by Karen A

[Tally]

Anything that results in more accurate diagnosis has to be a good thing, especially if it can mean earlier diagnosis.

 

A person would still have to be identified as probably autistic to be allowed to have the scan though. People who are having difficulty accessing assessment would still have difficulty accessing an MRI scan.

 

I don't know whether the MRI scan may be able to tell the difference between someone with significant autistic traits who does not quite meet the full diagnostic criteria, and someone who does. In any case, a diagnosis on its own is not much use with something as variable as autism as it does not tell you much about the person's actual support needs. If you're going to have to assess support needs anyway then you may as well use the assessment for diagnosis as well as documentation and save the expense of the MRI.

 

I would be very worried about having an MRI scan myself. I would like to confirm and validate my own diagnosis, but I would be frightened it would say I am not autistic after all.

[Karen A]

Anything that results in more accurate diagnosis has to be a good thing, especially if it can mean earlier diagnosis.

 

A person would still have to be identified as probably autistic to be allowed to have the scan though. People who are having difficulty accessing assessment would still have difficulty accessing an MRI scan.

 

I don't know whether the MRI scan may be able to tell the difference between someone with significant autistic traits who does not quite meet the full diagnostic criteria, and someone who does. In any case, a diagnosis on its own is not much use with something as variable as autism as it does not tell you much about the person's actual support needs. If you're going to have to assess support needs anyway then you may as well use the assessment for diagnosis as well as documentation and save the expense of the MRI.

 

I would be very worried about having an MRI scan myself. I would like to confirm and validate my own diagnosis, but I would be frightened it would say I am not autistic after all.

 

Please don't worry about that.The answer is very straightforward.An MRI scan is a medical procedure which requires informed consent.They cannot give you a scan you don't agree to.I think it is sad that someone like yourself with a clear AS diagnosis should have to feel the need to have it validated.There are few other medical conditions where people would feel they had any right to question a diagnosis given by a Dr or professional qualified to diagnose on the back of personal opinion based on limited information and prejudice.

 

A person would still have to be identified as probably autistic to be allowed to have the scan though. People who are having difficulty accessing assessment would still have difficulty accessing an MRI scan.

 

 

No I think

the research in America is aimed at MRI scans for young children before there is any possibility of identification by other methods.That is the main issue I have with the research.There would be large numbers of children subjected to an invasive procedure who turned out not to have ASD.

Even here there are many siblings of children who have ASD who also have ASD but there are many more who don't.If the chances of a sibling having ASD were shown to be high enough then there should be early screening for all sibbs now which would be relatively cheep but is not offered in most cases as far as I am aware.

If not sibbs how can they decide which children from the whole population to scan.

Edited December 4, 2010 by Karen A

[KezT]

Please don't worry about that.The answer is very straightforward.An MRI scan is a medical procedure which requires informed consent.They cannot give you a scan you don't agree to.I think it is sad that someone like yourself with a clear AS diagnosis should have to feel the need to have it validated.There are few other medical conditions where people would feel they had any right to question a diagnosis given by a Dr or professional qualified to diagnose on the back of personal opinion based on limited information and prejudice.

 

 

 

No I think

the research in America is aimed at MRI scans for young children before there is any possibility of identification by other methods.That is the main issue I have with the research.There would be large numbers of children subjected to an invasive procedure who turned out not to have ASD.

Even here there are many siblings of children who have ASD who also have ASD but there are many more who don't.If the chances of a sibling having ASD were shown to be high enough then there should be early screening for all sibbs now which would be relatively cheep but is not offered in most cases as far as I am aware.

If not sibbs how can they decide which children from the whole population to scan.

 

I would assume that the idea is that as soon as a child is identified as having posible ASD signs, they get an MRI, which would work out FAR cheaper, quicker and easier than multiple assessments and professional meetings

 

An MRI is a very safe test and there are no known complications or side-effects from the magnetic field used during the scan. there are some issues if you have metal implants in your body, but again, not many young children will have. there have ben a couple of incidences of an alergic reaction to the contrast medium, but nothing severe. the most common probem is claustraphobia and inability to stay still! hardly a dangerous procedure to dx a child!

 

it is`earl days yet, but a recognised medical dx would mean that people would not have to feel the need to "validate" theirdx!

 

As to other conditions where people feel that - everything that doesn't have a valid mideical test LOL: ME/CFS is the most obvious, or back pain, gulf war syndrome......

 

in all honesty, I find it hard to understand why ANYONE would not want a simple, definite dx process to be available?

Edited December 4, 2010 by KezT

[baddad]

 

I would be very worried about having an MRI scan myself. I would like to confirm and validate my own diagnosis, but I would be frightened it would say I am not autistic after all.

 

Hi Tally -

 

I think that's going to be a huge issue - as I said, I think that 6% 'inconclusive' statistic is going to get hammered to pieces. The difficult truth is, though, that people do 'acquire' diagnosis or symptoms that could lead to diagnosis for all sorts of reasons, and while there is a very real need to respond to the psychological triggers that might drive people (or their parent's / carers) towards an 'acquired' diagnosis, responding in a way that reinforces rather than challenging their misconceptions isn't going to help them. Likewise, the current situation where anyone who wants to 'borrow' the diagnosis on a casual basis feels quite justified in doing so or where, if they find the 'right' professional, anyone can buy a diagnosis over the counter, is undermining the genuine needs of genuine autistics. That's not to say, of course, that people necessarily 'acquire' a diagnosis knowingly; the problem with self-denial is that end bit, the denial! But at the AS end of the spectrum particularly the benefits of a 'woolly' diagnosis can far outweigh any drawbacks, particularly if it is only taken out and given an airing at the 'sufferers' (and I'm using that word ironically) discretion.

It is an absolutely horrible aspect of any definitive test that some people will be shocked by the results, but it's got to be better, IMO, than the current situation where all sorts of neuroses, social inadequecies, personal hang-ups' and perhaps serious mental health problems are potentially overlooked because autism provides a nice, cosy label that enables the real issues to be pushed to one side, and I think that's an especially improtant consideration when the real issues are actually the parent's/carer's issues, and it is a child who's suffering as a consequence..

 

 

L&P

 

BD

Edited December 4, 2010 by baddad

[Tally]

I would assume that the idea is that as soon as a child is identified as having posible ASD signs, they get an MRI, which would work out FAR cheaper, quicker and easier than multiple assessments and professional meetings.

But assessments would still be needed to document what difficulties a person had. A diagnosis is not enough on its own to receive support or benefits.

[KezT]

TBH, if they ever find even the perfect dx prcedure, that 100% acurate totally non-ivasive and has zero side effects of any kind -they still are very unlikely to use it restrospectively.

 

it would be used for new dx or were there is a question over the dx.

[Karen A]

I would assume that the idea is that as soon as a child is identified as having posible ASD signs, they get an MRI, which would work out FAR cheaper, quicker and easier than multiple assessments and professional meetings

 

An MRI is a very safe test and there are no known complications or side-effects from the magnetic field used during the scan. there are some issues if you have metal implants in your body, but again, not many young children will have. there have ben a couple of incidences of an alergic reaction to the contrast medium, but nothing severe. the most common probem is claustraphobia and inability to stay still! hardly a dangerous procedure to dx a child!

 

it is`earl days yet, but a recognised medical dx would mean that people would not have to feel the need to "validate" theirdx!

 

As to other conditions where people feel that - everything that doesn't have a valid mideical test LOL: ME/CFS is the most obvious, or back pain, gulf war syndrome......

 

in all honesty, I find it hard to understand why ANYONE would not want a simple, definite dx process to be available?

 

I can give you a list.

 

1.People who would prefer money to be spent on a detailed and thorough muti-professional assessment of what a child needs which cannot be provided by a diagnosis.A diagnosis on the back of an MRI scan would be just that.Some professionals would like nothing better than to pass diagnosis to a radiologist and a child never to be offered more than a diagnosis.A child would still need multiple assessments to establish what their needs are.

 

2.People who will not dream of spending money on Specialist Scanners and training for radiologists.

 

3.Parents who do not wish to consent to a medical procedure [it does require informed consent]without very sound evidence that it is justified..

 

4 People who would need to buy MRI scanners which is no small matter.

 

5.Professionals who would not dream of giving up professional responsibility for ASD diagnosis to a radiologist.

6.Professionals who would not like to have blanket provision for all children with ASD on the basis of a diagnosis.This would ultimately be based on the lowest level of need with lack of provision for those with complex needs.

 

Perhaps some people would like a simple definitive dx process through MRI scan including some GPs who will be the ones making a decision and who will say there is no justification for referral for a very costly procedure.This would be easier than saying no to a referral to CAMHS.With conditions such as back pain experience shows that when in doubt about diagnosis GPs tend to not refer on for further investigations when in doubt.In any case there are people with any one of multiple conditions with a clear diagnosis who are refused access to treatment.

 

In my area improved assessment has greatly increased the number of children being diagnosed with AS.This has lead to a clear diagnosis for some.However as there is less funding available and more children sharing it it has caused a dramatic reducation in priovision for all.I am not saying an MRI scan would not be helpful in some cases.However on its own it is not the answer to many of the issues.It could even lead to reduced provision because some professionals would go as far as to say ASD is not a treatable medical condition and they therefore will not offer anything.

 

I think a diagnosis is really only worthwhile if it leads to appropriate support and intervention.

Edited December 4, 2010 by Karen A

[Karen A]

Hi Tally -

 

I think that's going to be a huge issue - as I said, I think that 6% 'inconclusive' statistic is going to get hammered to pieces. The difficult truth is, though, that people do 'acquire' diagnosis or symptoms that could lead to diagnosis for all sorts of reasons, and while there is a very real need to respond to the psychological triggers that might drive people (or their parent's / carers) towards an 'acquired' diagnosis, responding in a way that reinforces rather than challenging their misconceptions isn't going to help them. Likewise, the current situation where anyone who wants to 'borrow' the diagnosis on a casual basis feels quite justified in doing so or where, if they find the 'right' professional, anyone can buy a diagnosis over the counter, is undermining the genuine needs of genuine autistics. That's not to say, of course, that people necessarily 'acquire' a diagnosis knowingly; the problem with self-denial is that end bit, the denial! But at the AS end of the spectrum particularly the benefits of a 'woolly' diagnosis can far outweigh any drawbacks, particularly if it is only taken out and given an airing at the 'sufferers' (and I'm using that word ironically) discretion.

It is an absolutely horrible aspect of any definitive test that some people will be shocked by the results, but it's got to be better, IMO, than the current situation where all sorts of neuroses, social inadequecies, personal hang-ups' and perhaps serious mental health problems are potentially overlooked because autism provides a nice, cosy label that enables the real issues to be pushed to one side, and I think that's an especially improtant consideration when the real issues are actually the parent's/carer's issues, and it is a child who's suffering as a consequence..

 

 

L&P

 

BD

 

 

It is very possible that MRI scans could lead to more borderline cases being picked up rather than less.

Research shows that very early or pre-birth experiences will also be detectable on MRI scans because they impact brain development in exactly the same areas of Social Communication and Emotional development as described in the study.

Psychotherapists,psychiatrists and speciaists in neuro-development and neuroscience have been debating over the issues you mention forever and they like to debate.

Reading MRI scans is a skill based on training rather than exact science.

The research only appears to be based on 120 cases in total probably with a small number of extremely experienced radiologists.This is a very small skale study.Radiology is as much a skill learned from practice as psychotherapy or psychiatry it is not an exact science.MRI scans need interpretation unlike some diagnostic procedures.

Whatever the debate about inconclusive diagnosis I am not sure an MRI scan is the answer you hope for without years more research.

 

In any case if a person wishes to 'borrow' a diagnosis on a casual basis a GP is extremely unlikely to be convinced of the need to spend a significant amount of money on an MRI scan.These are the cases where GPs do not refer now.They are unlikely to start and refer for more exensive diagnostic procedures in the future.Unlike an EP appointment an individual is unlikely to be able to obtain access to an MRI scan without perhaps private health insurance.So it is fairly likely that those who wish to ''borrow'' a diagnosis will continue to do so.

 

Apparently in any case an MRI scan costs between £300 or a £1000 pounds privately for anyone interested.It would be far cheeper to acquire a diagnosis elswhere.I am sure there will always be professionals offering diagnostic assessments.

 

 

The issue of parent's issues is an extremely serious matter and has extremely serious implications for many children which is why it is very unfortunate that even in cases where a clear link is demonstrated services to this group of children and their parents are being cut back in most parts of the country.There is no clear evidence that this has anything to do with AS diagnosis.In fact those children most at risk are very unlikely to come into this category.Parents who fight for an AS diagnosis usually require money,stamina and are articulate enough to fight for what they want.Those parents with serious mental health problems or Social Problems which most impact their children do not have the resources to fight for anything and their children are probably not picked up at all.

 

In fact at a time when CAMHS budgets are being cut back left right and centre I would argue that intensive support and intervention for families where parents have recognised documented mental health problems could be considered a far better use of very limited resources than MRI scans to prove a diagnosis of AS where CAMHS does not offer any input and some would argue there is no recognised research based effective treatment available.

 

Furthermore the use of MRI scans to prove to parents that they have any one of the stigmatising labels you advocate rather than their child having AS would not in my opinion be a good use of resources and such intervention could not be justified as being in the child's best interests .

 

Having a child with an ASD diagnosis does not prevent people using the stigmatizing labels you choose to adopt and so is not a factor in any decision people might like to make as to whether an MRI scan would be worthwhile.

 

The reality is that there has been an effective system in place for many years for early screening of children with AS in the form of health visitors and Sure Start.Sure Start is being dramatically cut back in most areas.This is a far more significant issue for those who wish to push for early diagnosis of ASD.If the LAs are no longer funding sure start,thousands of health visitor posts are vacant and Social Workers now hardly get to do any work other than with those children most at risk these are the issues that need to be addressed first.Any wish for significant funding for MRI scanners is in my opinion some distance from reality.

 

.

Edited December 4, 2010 by Karen A

[Karen A]

TBH, if they ever find even the perfect dx prcedure, that 100% acurate totally non-ivasive and has zero side effects of any kind -they still are very unlikely to use it restrospectively.

 

it would be used for new dx or were there is a question over the dx.

 

The CAMHS psychiatrist who diagnosed Ben believes there will be enough genetic evidence in a few years to diagnose ASD with a blood test.Whilst still invasive it would be more acurate than an MRI scan which is still ultimately open to interpretation.

 

Karen.

[Karen A]

http://www.radiologyinfo.org/en/info.cfm?pg=headmr

This link gives a very detailed outline of what is involved in an MRI scan.

It does usually involve the insertion of an IV canula to inject contrast medium.Fasting is required for eight hours.It requires that a child lie completely still for forty five minutes.The accuracy of results depends very much on compliance.

Whilst it is generally considered safe it may be worth bearing in mind that I consider childhood immunisation perfectly safe and far less invasive.They do not recomend MRI scans on pregnant women without a clear clinical justification.

 

Karen.

Edited December 4, 2010 by Karen A

[KezT]

http://www.radiologyinfo.org/en/info.cfm?pg=headmr

This link gives a very detailed outline of what is involved in an MRI scan.

It does usually involve the insertion of an IV canula to inject contrast medium.Fasting is required for eight hours.It requires that a child lie completely still for forty five minutes.The accuracy of results depends very much on compliance.Whilst it is generally considered safe it may be worth bearing in mind that I consider childhood immunisation perfectly safe and far less invasive.They do not recomend MRI scans on pregnant women without a clear clinical justification.

 

Karen.

 

but obviously not always as my little one did not have an IV or even an injection, and was fed just minutes before going in. Although I did have to fill out a ridiculously long form to be allowed to sit in the MRI room with him

 

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.

[bid]

The question of general anaesthetics is a tricky one...

 

My eldest needed an MRI scan when he was 6 to check for a possible tumour on his spine or brain, this was during the time he was going through assessment and eventual diagnosis.

 

With full-blown ADHD and severe dyspraxia there was no way in a million trillion years he would have been able to stay perfectly still for the length of the MRI scan...it was exciting getting him onto the trolley to have the GA!!

 

Would I have agreed to a GA for an MRI for a possible dx? Not sure to be honest...GA is not something to be undertaken lightly...

 

It would be great if there was a definitive blood test, like there is for Fragile X and some other conditions.

 

Bid

 

Incidentally, I'm taking part in some research on autism and language processing, which involves an MRI scan while I read things...will report back!!

Edited December 4, 2010 by bid

[Karen A]

but obviously not always as my little one did not have an IV or even an injection, and was fed just minutes before going in. Although I did have to fill out a ridiculously long form to be allowed to sit in the MRI room with him

 

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.

 

Sorry I am cynical old cow with a chest infection who lives in one of the most deprived LAs in the country.

 

My LA introduced a new multiple professional team last year for the assessment of AS.

It was extremely successful and has picked up loads of cases which were considered borderline or debatable.

The result is that there are no more staff to support these children.Existing staff have been told to prioritise work.There are plans afoot to review Statements and deliberately and systematically reduce provision.ASD outreach teachers will now be giving advice rather than offering individual work.

Sure Start is being cut back and there is now far less early intervention than there was a few months ago.

 

There is frequent coverage in the media at the minute saying that the removal of PCTs and giving responsibility to GPS for funding will lead to serious rationing even in cases where GPs have experience and there is a clear rationale for referal.

 

If you have read elsewhere I am a very strong advocate of early intervention.However I think that a lengthy fight for an MRI scan could make diagnosis more complicated than currently.It will be too expensive for GPs to agree referral.GPs do not currently have the training often to spot who to refer.It only provides a diagnosis and gives no discription of what a child needs and most frustrating of all early intervention is being cut back and a diagnosis sadly does not guarantee funding for any intervention at all.

 

The reality is that there has been an effective system in place for many years for early screening of children with AS in the form of health visitors and Sure Start.Sure Start is being dramatically cut back in most areas.This is a far more significant issue for those who wish to push for early diagnosis of ASD.If the LAs are no longer funding sure start,thousands of health visitor posts are vacant and Social Workers now hardly get to do any work other than with those children most at risk these are the issues that need to be addressed first.Any wish for significant funding for MRI scanners is in my opinion some distance from reality.

 

[repeated from earlier post which I added after your post]

 

I should say that I do not have an issue with the research study you are participating in where there is the possibility that a link between AS and sibbs could be identified.However in the American study I cannot understand how the research could be used in practice without doing an MRI on all children.

Karen.

Edited December 4, 2010 by Karen A

[RainbowsButterflies]

http://www.radiologyinfo.org/en/info.cfm?pg=headmr

This link gives a very detailed outline of what is involved in an MRI scan.

It does usually involve the insertion of an IV canula to inject contrast medium.Fasting is required for eight hours.It requires that a child lie completely still for forty five minutes.The accuracy of results depends very much on compliance.

Whilst it is generally considered safe it may be worth bearing in mind that I consider childhood immunisation perfectly safe and far less invasive.They do not recomend MRI scans on pregnant women without a clear clinical justification.

 

Karen.

I've had an MRI scan on my brain (actually it would be interesting to see if there are any indications), and I didn't need an IV, or have to fast for 8 hours. Although it did involve lying perfectly still for a long time with lots of different clicking and humming noises that weren't pleasant.

[Karen A]

I've had an MRI scan on my brain (actually it would be interesting to see if there are any indications), and I didn't need an IV, or have to fast for 8 hours. Although it did involve lying perfectly still for a long time with lots of different clicking and humming noises that weren't pleasant.

 

I admit then perhaps not the fasting in all cases and perhaps not even the IV.However there is a huge difference between doing an MRI on a four month old baby or a consenting adult and doing one on a two or three year old who by definition by way of needing ASD assessment and meeting the criteia for assessment is not going to lie still in an enclosed space with noises around him without at least sedation.

 

In my hummble opinion any two year old that is able to cope without intense preparation or sedation[which would require fasting and an IV] in an MRI scanner and lie completely still for fotyfive minutes would probably not need a scan as a tool for AS diagnosis....they either would not have AS or have obtained so much input as to not meet the criteria for an AS diagnosis.

Unless perhaps MRI scanners happened to be an area of Special Interest . or they were unconcious for some other reason in which case AS diagnosis would not be a priority.

 

I cannot believe I am having this debate when some children with ASD find a hair cut or simple trip to the dentist or optician stressful.These are a tea party compared with an MRI scan.

 

Here speaks a women who has a son with AS who has had two broken arms that required x ray and who once required three ENT appointments and a GA to remove popcorn kernal from his ear which is far less stressful and is 12.

Edited December 4, 2010 by Karen A

[baddad]

I admit then perhaps not the fasting in all cases and perhaps not even the IV.However there is a huge difference between doing an MRI on a four month old baby or a consenting adult and doing one on a two or three year old who by definition by way of needing ASD assessment and meeting the criteia for assessment is not going to lie still in an enclosed space with noises around him without at least sedation.

 

In my hummble opinion any two year old that is able to cope without intense preparation or sedation[which would require fasting and an IV] in an MRI scanner and lie completely still for fotyfive minutes would probably not need a scan as a tool for AS diagnosis....they either would not have AS or have obtained so much input as to not meet the criteria for an AS diagnosis.

Unless perhaps MRI scanners happened to be an area of Special Interest . or they were unconcious for some other reason in which case AS diagnosis would not be a priority.

 

 

TBH, though, I can't see many two year olds without ASD who would be able to do this either, so it's a bit of a moot point. I'd agree that an older child might be equally unwilling, but I don't think you could take that unwillingness as 'proof' of ASD, any more than a child not allowing someone to remove a piece of popcorn from their ear is proof of ASD (and please accept that that is not intended in any way as a 'challenge' or anything else to your son's diagnosis - it is simply a statement of fact that there could be many other explanations that had nothing to do with ASD whatsoever)...

In the most straightforward terms, without any consideration for additional factors like IV feeds or general anaestethics, if there was any doubt whatsoever about a child's diagnosis and there was an MRI scan that could confirm one way or the other, personally I wouldn't hesitate for a second. Any inconvenience and/or risk (assuming there was no additional risk arising from other medical complications or implications) would be completely offset by the potential gain. I don't think anyone's underestimating the potential problems of conducting an MRI, but if faced with the prospect of a general anaestethic to establish a diagnosis of autism, compared to something like, say, a general anaesthetic to fill or extract a tooth (which could arise for many kids, autistic or NT) I think you have to look at it in context and perspective.

 

L&P

 

BD

[coolblue]

 

 

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.

 

cb

[coolblue]

 

 

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.

 

cb

[KezT]

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.

 

cb

 

but fragile x is picked up by a blood tst, brain damage is usually picked up at the time of the damage. Surely it would be useful to be able to dx "genetic" Autism as early as poissible too?

 

The argument that is running here appears to be against the concept of having a definitive dx process which just sounds insane to me! Surely a definite dx is always better than a "possible" dx. If I had ANY doubt about my son's DX I would still be screaming at any and all professionals to exclude anything else that might be - which can be a long and traumatic experiance! A definitive dx would be far preferable than "he shows the signs of ASD but we don't know why, so lets call it ASD and you'll just have to put up with it"

[Karen A]

TBH, though, I can't see many two year olds without ASD who would be able to do this either, so it's a bit of a moot point. I'd agree that an older child might be equally unwilling, but I don't think you could take that unwillingness as 'proof' of ASD, any more than a child not allowing someone to remove a piece of popcorn from their ear is proof of ASD (and please accept that that is not intended in any way as a 'challenge' or anything else to your son's diagnosis - it is simply a statement of fact that there could be many other explanations that had nothing to do with ASD whatsoever)...

In the most straightforward terms, without any consideration for additional factors like IV feeds or general anaestethics, if there was any doubt whatsoever about a child's diagnosis and there was an MRI scan that could confirm one way or the other, personally I wouldn't hesitate for a second. Any inconvenience and/or risk (assuming there was no additional risk arising from other medical complications or implications) would be completely offset by the potential gain. I don't think anyone's underestimating the potential problems of conducting an MRI, but if faced with the prospect of a general anaestethic to establish a diagnosis of autism, compared to something like, say, a general anaesthetic to fill or extract a tooth (which could arise for many kids, autistic or NT) I think you have to look at it in context and perspective.

 

L&P

 

BD

 

You are entitled to your opinion and should regarding your child since you would be the one signing the consent form.

Most parents would way up the pros and cons of a desision for any medical procedure with great care.A doctor would not be alowed to influence them on the basis of his or her views.

I have had my children vaccinated and think the idea that there is any connection between to MMR vaccine and ASD is utter tosh.But would not dream of judging others who decide to make a different decision.

I will not even begin to discuss Ben with you because to be frank I think it absolutely none of your business and it is completely off topic.

Edited December 5, 2010 by Karen A

[Karen A]

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.

 

cb

 

It is probably not cheaper in most cases.A day admission is expensive.Radiologists are payed more than most of the professionals within CAMHS and at the same level as a consultant.A multi-agency team would still be needed to plan what to do about the diagnosis.

Karen.

[baddad]

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.

 

Is it? Are they? I'd agree that there is a 'spectrum of symptoms' (although that said even the psychologist who first coined the term is now expressing regret because 'spectrum' has been so widely misinterpreted) and that the 'parameters are unclear', but the whole point about this MRI is that it could provide some clarity - so what could there possibly be to object to in that?

 

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.

 

That's making woolly something that is pretty clearly defined: Damage, abnormality or disease in certain areas of the brain does cause (or correlate) to autism; the 'chicken and egg' scenario (did the behaviour or damage come first) is, in terms of the point you are making, irrelevant, but could be crucially important in a situation where a child was being coerced into behaviours or enabled in them, however well intended the person coercing or enabling. That's without considering factors like out and out and deliberate abuse, which could also give rise to abnormal behaviours triggering abnormal brain development, if that theoretical model is correct.

 

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.

 

But wouldn't an MRI scan also reveal - or at least be able to contribute to - diagnosis of abnormal neurotransmitter levels? Wouldn't they look, effectively, very similar: an abnormally developed area or an area that does not respond as it should? I'll put my hands up and say I don't really know anything about 'abnormal neurotransmitter levels' in autism or how the 'chemistry' (is that the right word) would affect the brain physically, but it seems logical that looking at the brain itself is likely to reveal more than looking at the behaviours alone.

Certainly there would still be some cases that were 'borderline', but even a clear 'borderline' diagnosis (?) based on hard evidence of some degree of abnormality is better than an interpretation of 'acquired' or 'modelled' behaviours, and it would certainly be more valuable than a diagnosis bought at a half-hour 'interview' from a private practitioner with a word-of-mouth reputation for being very 'sympathetic' or accommodating.

 

In the simplest terms, what would be the problem with a test that could clearly indicate a neurological explanation for someones autistic behaviour or show conclusively that no known neurological cause was evident? Even if as nothing more than a 'starting point' for looking for other explanations it would have to be immensely valuable, wouldn't it?

 

Science over subjective analysis and speculation? With something as potentially damaging as misdiagnosis of a lifelong disability I'll take science, thanks. And for a general view of the populartity of 'subjective analysis and speculation' just have a look through forum threads relating to 'battles' with CAMHS, Paediatricians, GP's, Consultants, etc etc, and you'll see that many cite this as their biggest problem regarding dx.

 

L&P

 

BD

[Karen A]

brain damage is usually picked up at the time of the damage

 

Not always.An initial brain scan only shows the initial damage.That is why head injury patients require repeated brain scans.Head Injury patients change over time .That is why a patient can suffer a head injury and appear fine but then deteriorate either.Radiologists cannot predict with certainty what the outcome would be.

 

Karen.

Edited December 5, 2010 by Karen A

[Karen A]

The whole point of a throrough diagnostic assessment involving multiple-professionals is that enables psychiatrists and psychotherapists to rule out other possible factors such as abuse or early child-hood trauma.

 

Diagnosis through MRI scan without consideration of all the environmental,social and medical factors would make it less likely that these issues would be taken into account not more.In any case there is already a gold standard assessment that I am told is 96 per cent effective in discriminating between AS and other factors in borederline cases.It is the 3di.

 

There is clear evidence on brain scan that very early child-hood trauma leads to changes in the makeup and wiring of the brain that are almost indistinguishable from ASD.This research looked at people who had ASD and people who didn't.It didn't even involve those who are borderline.

 

Karen.

[baddad]

You are entitled to your opinion and should regarding your child since you would be the one signing the consent form.

Most parents would way up the pros and cons of a desision for any medical procedure with great care.A doctor would not be alowed to influence them on the basis of his or her views.

I have had my children vaccinated and think the idea that there is any connection between to MMR vaccine and ASD is utter tosh.But would not dream of judging others who decide to make a different decision.

I will not even begin to discuss Ben with you because to be frank I think it absolutely none of your business and it is completely off topic.

 

Why do you think 'agreeing in a second' (or whatever words I used) isn't 'weighing up the pros and cons'? I wouldn't hesitate for a second in jumping off the tracks if I saw a speeding train coming towards me, but it wouldn't mean I hadn't thought through the implications of not jumping! I don't know the statistic for how many perfectly healthy young adults die directly as a result of a general anaestethic, but I assume that, statistically, it's far far safer than, say, car travel on a busy motorway. So if I could get a firm indication of whether a 'borderline' child of mine had a lifelong disability or not, I should, technically, spend more time worrying about getting him/her to and from the hospital than the MRI procedure itself. It really is, for me at least, a no brainer comparable to the speeding train scenario I outlined - I'd jump!

 

L&P

 

BD

[Karen A]

but fragile x is picked up by a blood tst, brain damage is usually picked up at the time of the damage. Surely it would be useful to be able to dx "genetic" Autism as early as poissible too?

 

The argument that is running here appears to be against the concept of having a definitive dx process which just sounds insane to me! Surely a definite dx is always better than a "possible" dx. If I had ANY doubt about my son's DX I would still be screaming at any and all professionals to exclude anything else that might be - which can be a long and traumatic experiance! A definitive dx would be far preferable than "he shows the signs of ASD but we don't know why, so lets call it ASD and you'll just have to put up with it"

 

 

That is not the debate I am having just to clarify.

I do not believe that the current system of multi-professional assessment done thoroughly ,taking all factors into account with appropriate provision put in place with a clear plan should be replaced by one disgnostic test carried out by a radiologist.I do not believe that funders will fund both and I would prefer the first option.

Karen.

[Karen A]

Why do you think 'agreeing in a second' (or whatever words I used) isn't 'weighing up the pros and cons'? I wouldn't hesitate for a second in jumping off the tracks if I saw a speeding train coming towards me, but it wouldn't mean I hadn't thought through the implications of not jumping! I don't know the statistic for how many perfectly healthy young adults die directly as a result of a general anaestethic, but I assume that, statistically, it's far far safer than, say, car travel on a busy motorway. So if I could get a firm indication of whether a 'borderline' child of mine had a lifelong disability or not, I should, technically, spend more time worrying about getting him/her to and from the hospital than the MRI procedure itself. It really is, for me at least, a no brainer comparable to the speeding train scenario I outlined - I'd jump!

 

L&P

 

BD

 

I will make this clearer since you are not getting the message.

 

This is now about the pros and cons of GA which very fortunately you are not trusted with explaining to parents.

Actually for the record I probably wouldn't.

In three years all I have ever cared about was obtaining the help Ben needed which he obtained without a diagnosis.I never cared one bit about needing a label.Ben has an AS diagnosis because he told CAMHS he wanted to know.They would not have done even the 3di if he didn't want it.

I do not need a diagnostic label that shows my child has a lifelong disability and Ben is the same person he was eighteen months ago only now he gets virtually no help at all.

.

For many people including most of the children in my LA it makes very little difference at all.

Edited December 5, 2010 by Suze
personal content

[Suze]

ok I have my moderator hat on, can I please ask members not to make personal comments about other members or their children etc, this thread is only going to get more heated if it continues, I may also after recieving several pm,s be editing some comments from certain posts.The thread is drifting off topic lets get back on track

[smiley1590]

i didn't reach official diagnosis until in my early teens 14 years old i believe that if picked up detected early enough that more appropriate help and support can be moulded around the person who has the A.S.D conditon and is affected everyday by it not knowing can be to person's self esteem well being ( MH) and identity so can lead to dangerous situations arising from people not knowing who they truly are inside and what's going on can leave them confused and lost i believe knowing earleri on can make huge difference and possibly reduce any MH probs etc cropping 's 'ugly head' later on and can break up /destroy families and destroy parents morale and sense of well being on themselves not knowing takes it toll through tress ,anxiety depression as they knowing sometimes going on just what that is! so answers early on can benefit amily unit save alot emotional in,heartache and misery which can literally tear people /families apart! so i think you need to know from start day one if possible i would have had steadier foundation to work on that's my personal opinion anyway! so i personally think scan would work hand in hand with assessment ,support help invention when needed instead of waiting until a crisis appears and it too late!

 

XKLX

[coolblue]

Is it? Are they? I'd agree that there is a 'spectrum of symptoms' (although that said even the psychologist who first coined the term is now expressing regret because 'spectrum' has been so widely misinterpreted) and that the 'parameters are unclear', but the whole point about this MRI is that it could provide some clarity - so what could there possibly be to object to in that?

 

 

 

That's making woolly something that is pretty clearly defined: Damage, abnormality or disease in certain areas of the brain does cause (or correlate) to autism; the 'chicken and egg' scenario (did the behaviour or damage come first) is, in terms of the point you are making, irrelevant, but could be crucially important in a situation where a child was being coerced into behaviours or enabled in them, however well intended the person coercing or enabling. That's without considering factors like out and out and deliberate abuse, which could also give rise to abnormal behaviours triggering abnormal brain development, if that theoretical model is correct.

 

 

 

But wouldn't an MRI scan also reveal - or at least be able to contribute to - diagnosis of abnormal neurotransmitter levels? Wouldn't they look, effectively, very similar: an abnormally developed area or an area that does not respond as it should? I'll put my hands up and say I don't really know anything about 'abnormal neurotransmitter levels' in autism or how the 'chemistry' (is that the right word) would affect the brain physically, but it seems logical that looking at the brain itself is likely to reveal more than looking at the behaviours alone.

Certainly there would still be some cases that were 'borderline', but even a clear 'borderline' diagnosis (?) based on hard evidence of some degree of abnormality is better than an interpretation of 'acquired' or 'modelled' behaviours, and it would certainly be more valuable than a diagnosis bought at a half-hour 'interview' from a private practitioner with a word-of-mouth reputation for being very 'sympathetic' or accommodating.

 

In the simplest terms, what would be the problem with a test that could clearly indicate a neurological explanation for someones autistic behaviour or show conclusively that no known neurological cause was evident? Even if as nothing more than a 'starting point' for looking for other explanations it would have to be immensely valuable, wouldn't it?

 

Science over subjective analysis and speculation? With something as potentially damaging as misdiagnosis of a lifelong disability I'll take science, thanks. And for a general view of the populartity of 'subjective analysis and speculation' just have a look through forum threads relating to 'battles' with CAMHS, Paediatricians, GP's, Consultants, etc etc, and you'll see that many cite this as their biggest problem regarding dx.

 

L&P

 

BD

 

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.

 

cb