DSM-5 classification changes due for pub 05/13

[cmuir]

See weblink:

 

http://en.wikipedia.org/wiki/DSM-5#Asperger_syndrome

 

Basically states:

 

There have been proposals to eliminate Asperger's syndrome as a separate disorder, and instead merge it under autism spectrum disorders (ASD). Under the proposed new classification, clinicians would rate the severity of clinical presentation of ASD as severe, moderate or mild. However, this proposal has inspired much controversy amongst Asperger's Syndrome specialists such as Tony Attwood and Simon Baron-Cohen and opposition groups, such as "Keep Asperger's Syndrome in the DSM-V."

 

 

Don't know about anyone else, but my own feeling is that I'd rather my son's diagnosis remains as Asperger's Syndrome as opposed to merging into ASD (although, it is currently recognised as an ASD) for various reasons. Although I tend to explain to people (if it crops up), that AS is a form of autism, there are differences. My worry is that if diagnoses are no longer specific, how will that affect things like education, in particular, if a child's disorder is not specific (ASD cover a host of disorders), then will that make it more difficult for the child to receive specific support? I could go on.

 

What do you all think?

 

Caroline.

[BusyLizzie100]

 

 

Don't know about anyone else, but my own feeling is that I'd rather my son's diagnosis remains as Asperger's Syndrome as opposed to merging into ASD (although, it is currently recognised as an ASD) for various reasons. Although I tend to explain to people (if it crops up), that AS is a form of autism, there are differences. My worry is that if diagnoses are no longer specific, how will that affect things like education, in particular, if a child's disorder is not specific (ASD cover a host of disorders), then will that make it more difficult for the child to receive specific support? I could go on.

 

What do you all think?

 

Caroline.

 

Very briefly, since I haven't read the link yet - Asperger Syndrome is often dismissed in certain areas as not meeting criteria for services, where ASD does. For example, my middle son has a diagnosis of ASD and has had a social worker assessment; my eldest son has a diagnosis of AS and purely on that basis alone social services will not assess - their blanket rule is that AS does not meet their criteria.

 

I've heard people have had similar experiences with, for example, OT.

 

Lizzie x

[cmuir]

Very briefly, since I haven't read the link yet - Asperger Syndrome is often dismissed in certain areas as not meeting criteria for services, where ASD does. For example, my middle son has a diagnosis of ASD and has had a social worker assessment; my eldest son has a diagnosis of AS and purely on that basis alone social services will not assess - their blanket rule is that AS does not meet their criteria.

 

I've heard people have had similar experiences with, for example, OT.

 

Lizzie x

 

 

 

Ah yes. We were refused a social worker on the basis that AS is no longer seen in SW circles are a disability. However, it was only because R is extremely challenging that we were able to eventually have an allocated social worker. So I guess in some circles it actually might be a good thing.

Edited March 22, 2011 by cmuir

[baddad]

There was a topic on this a while ago, but I can't find it now...

I don't like the change, in a nutshell because I think if all come under the same umbrella public perception will 'shift' and autism will come to mean to most what 'Aspergers' is already starting to mean: 'gifted but slightly wacky'. Of course that's not what Aspergers does/i] mean, but increasingly it's what it is assumed to mean and that will continue as long as 'gifted but slightly wacky' people (or people who like to think of themselves as 'gifted but slightly wacky') are accommodated beneath the Aspergers Umbrella.

In real terms, getting appropriate support for people with autism (or genuinely disabling Asperger's) will get much harder - as if 'cutbacks' weren't already doing that!

Personally, I'd prefer a new '3 tier' diagnosis - give up the term Aspergers and just let any Tom, Dick or Hermoine who wants to casually apply it to themselves as a socially acceptable definition of 'high maintenance' appropriate it, introduce a new 'GDA' diagnosis for those Genuinely Disabled by Aspergers, and good old fashioned autism so that those most profoundly affected aren't written off completely. I think the middle ground, 'GDA' could also reasonably be used to accommodate higher functioning people with autism to make the division even clearer, but never EVER extended to re-enlist the 'casuals' who've appropriated and devalued the diagnosis over the past couple (but most significantly past 5 years or so) of decades.

 

L&P

 

BD

[Mumble]

I suspect I'm one of the few people (and particularly rare amongst those with a dx) who support this change.

 

My dx is a bit of a muddy grey mishmash (mmm reminds me of uni mashed-potato.. ) between AS/HFA simply because they can't be clear about my speech development - now this shouldn't matter as an adult as they are essentially the same once the speech has 'caught up' but they are thought of differently by lay-people (and some people who say they have AS, interestingly, who refuse to accept they are therefore autistic, but that's a whole 'nother debate).

 

This has the potential to go two ways - I understand Dipdaps reasoning and yes, this is something I would worry about happening, but I think it also have the potential to tighten up diagnoses (I wonder if people would be less willing to go all out for a dx if they were going for a dx of autism rather than AS? ) and increase understanding.

 

My only concern is the tiering:

 

Under the proposed new classification, clinicians would rate the severity of clinical presentation of ASD as severe, moderate or mild.

 

Whilst I think there is a fairly universal understanding of what we are referring to when we talk about severe autism (indeed I would use the term when talking about my brother and expect a shared understanding), I do feel that there are issues with these labels. First and foremost I do not believe that autism is a stable condition and I would even question the severity levels - to me it is the combination with accompanying learning difficulties that leads in many cases to the severe presentation.

 

Further, I'm not sure where the boundaries are between levels - I can see new levels such as moderately severe, mild-moderate, etc. emerging.

 

Additionally, because I do not believe it is stable, I think it would be difficult to place someone on a stable level - autistic difficulties are so changeable as a result of the immediate environment that someone labelled 'mild' autism may have very severe difficulties in a particular environment, and vice versa.

 

I believe we would be far better off having just autism as a dx, or autism with/without learning difficulties or if you must have levels, autism (referring to those with learning difficulties/IQ below 70) and High functioning autism (without learning difficulties).

 

I haven't read the documentation and the answer may be there, but what will happen if they do change it - will everyone with a dx of AS/HFA have to be re-assessed against the new criteria?

[smiley1590]

autism is sometimes more supported and recognised and AS is on backburner ... A.S as seen as 'mild' and when living with it and had little support is daily struggle difficult cope with having an ASD diagnosis may make it easier less of a battle ...

 

XKLX

[baddad]

 

My dx is a bit of a muddy grey mishmash (mmm reminds me of uni mashed-potato.. ) between AS/HFA simply because they can't be clear about my speech development - now this shouldn't matter as an adult as they are essentially the same once the speech has 'caught up' but they are thought of differently by lay-people (and some people who say they have AS, interestingly, who refuse to accept they are therefore autistic, but that's a whole 'nother debate).

 

This has the potential to go two ways - I understand Dipdaps reasoning and yes, this is something I would worry about happening, but I think it also have the potential to tighten up diagnoses (I wonder if people would be less willing to go all out for a dx if they were going for a dx of autism rather than AS? ) and increase understanding.

 

 

Hiya mumble - Dipdabs here again (I think!?)

 

I do agree with your point about 'mishmash' dx's, but think that giving Aspergers it's 'real' meaning back would help redress the balance. I think in many ways (although I know some - including Ros Blackburn - hold different opinions and offer very coherent explanations for why)with HFA and the 'GDA' I mentioned it is and should be a moot point. Trouble is, I don't think the proposed new classifications would sort it out, and 'High Functioning Autism' would just become what Aspergers is in many ways now, i.e. a defintion that gets applied across a very broad spectrum (no avoiding that word is there!), but is actually perceived only by the tip of a much, much bigger iceberg. People would say, 'Oh you know, I'm "High functioning" that means I'm clever and keep my Cd's in alphabetical order and you can't have a go back if I'm rude to you, but I don't do any of that really crazy stuff the nutters on the next rung down do.' (anyone taking offense at that is REALLY missing the point, BTW so don't even go there! )

 

I guess really that makes it a moot point whatever they call it, but I do think the current situation is very damaging, and ultimately (ultimately? It already is, as Cmuirs post highlights) people with 'GDA' and HFA are going to pay the real costs of casual and over diagnosis.

 

L&P

 

Flip Flop

[GaryS]

I have difficulty with all the classifications as the condition is so clearly a diffuse spectrum. Since the initial behaviour descriptions by various psychologist there has been a number of "new" conditions and researchers are continually respecifying and coming up with tweaks to DSM which explain slight alternate specificities as separate "disorders".

 

The problem I have is two fold; firstly I don't think autism has anything to do with learning difficulties. The second is that a number of conditions, which may currently be classified as different according to the various DSM classifications, will eventually be brought under a more general the ASC (PDD) umbrella.

 

This basic for these suppositions are based around my prediction that most of what we are currently describing as behavioural problems/differences will be identified as a series of genetically derived neurological differences. Almost certainly a complex series of genes will be involved and it will take some advances in genetic mapping but I genuinely believe this will happen - it has already begun. I also believe that a series of genes will also explain what we call learning difficulties, expression of which obviously occurs in conjunction with those expressed with autism. Once we are able to identify these genes we will be able to classify with accuracy.

 

The crux of what I'm saying is that the difficulties we have in understanding Aspergers or ASC or PAD or ADD/HD etc etc etc is that the method of classification is at fault not our understanding of the condition. Once we can "measure" the "reason" for the condition, only then I think condition can accurately be labelled and understood.

 

I find using IQ to separate functionality for this type of condition very, very wrong and has lead in the past and continues to lead to incorrect understanding of ASC.

[Mumble]

I don't think autism has anything to do with learning difficulties.

The underlying autism doesn't, but in many cases the two occur together and interact in a myriad of complex ways. We can't remove the learning disability so can't say what the underlying autism is actually like. Is there actually a difference or are the behaviours exacerbated by the learning difficulty? Is HFA in an individual without co-morbids or mental health difficulties autism in a 'pure' sense? These are all philosophical questions, BTW, I don't know the answers.

[bid]

I would say I'm fine with the ASD term, but opposed to the qualification of 'mild'.

 

Sherbetdab

[Mumble]

I would say I'm fine with the ASD term, but opposed to the qualification of 'mild'.

 

Sherbetdab

Succinct and to the point. That coffee (or whatever's in your 'sherbet' ) has finally kicked in. However, I never use 3 words when 300 will do... even if I mean the same thing.

[coolblue]

I have difficulty with all the classifications as the condition is so clearly a diffuse spectrum.

 

Me too.

 

Since the initial behaviour descriptions by various psychologist there has been a number of "new" conditions and researchers are continually respecifying and coming up with tweaks to DSM which explain slight alternate specificities as separate "disorders".

 

The problem I have is two fold; firstly I don't think autism has anything to do with learning difficulties. The second is that a number of conditions, which may currently be classified as different according to the various DSM classifications, will eventually be brought under a more general the ASC (PDD) umbrella.

 

Autism is a description of certain aspects of behaviour. The same genetic disorder could underlie both the autism and the learning difficulties in some people.

 

This basic for these suppositions are based around my prediction that most of what we are currently describing as behavioural problems/differences will be identified as a series of genetically derived neurological differences. Almost certainly a complex series of genes will be involved and it will take some advances in genetic mapping but I genuinely believe this will happen - it has already begun. I also believe that a series of genes will also explain what we call learning difficulties, expression of which obviously occurs in conjunction with those expressed with autism. Once we are able to identify these genes we will be able to classify with accuracy.

 

The crux of what I'm saying is that the difficulties we have in understanding Aspergers or ASC or PAD or ADD/HD etc etc etc is that the method of classification is at fault not our understanding of the condition. Once we can "measure" the "reason" for the condition, only then I think condition can accurately be labelled and understood.

 

I think the method of classification is at fault AND our understanding is at fault if we assume that a descriptive term for aspects of behaviour is necessarily a symptom of a distinct, single condition.

 

I find using IQ to separate functionality for this type of condition very, very wrong and has lead in the past and continues to lead to incorrect understanding of ASC.

 

I was stunned to find IQ still being used as a measure of anything - the sub-tests are useful, but the overall score is more or less meaningless.

[GaryS]

I would say I'm fine with the ASD term, but opposed to the qualification of 'mild'.

 

Sherbetdab

 

ASC

 

 

dibdibdib

[Mumble]

ASC

ASD

 

Condition takes away from the very real and very disabling aspects of the disorder.

[RainbowsButterflies]

I agree with Mumble and much prefer ASD

[GaryS]

Me too.

 

 

Autism is a description of certain aspects of behaviour. The same genetic disorder could underlie both the autism and the learning difficulties in some people.

 

It could, but from the evidence I've seen so far, Autism is a perceptual local processing difference. There may be similar secondary effects and of course more yet to be discovered - or I could have misunderstood everything!

 

I think the method of classification is at fault AND our understanding is at fault if we assume that a descriptive term for aspects of behaviour is necessarily a symptom of a distinct, single condition.

 

True, but I think that most accept that it can present with a wide range of behaviours which are certainly overlapping.

 

I was stunned to find IQ still being used as a measure of anything - the sub-tests are useful, but the overall score is more or less meaningless.

 

I think it can be used as a general indicator of potential and some important facets of intellect (in some areas). Some of the other measures can give more information but all of these depend on the test being unbiased. The analytical, mathematical and spatial areas of the current genre of tests completely ignore interpretation, systematic and language facets which used to play a more central role in the questionnaire. Consistency is also a problem, my score has changed by 35 points depending on the mix of questions. Maybe it's not the test, but how it's applied?

[GaryS]

I agree with Mumble and much prefer ASD

 

 

The reason I object to "Disorder" (in it's medical sense) is that it implies abnormality. It may be semantic but it's the connotation that the autistic viewpoint is in some way automatically wrong. Autism (in it's strictest and purest sense) seems to me to be a subconscious selfish condition processing the sensory inputs to the best benefits of ones self. The altruistic possibilities may or may not be assessed but ultimately the net effect is self-beneficial. Now we may argue this as being detrimental to wider society and in which case it is outside the norm hence abnormal - but this doesn't mean wrong (to me anyway).

[baddad]

ASD

 

Condition takes away from the very real and very disabling aspects of the disorder.

 

AS S

 

You can make the other S anything you like - I'm just being naughty!

 

I'm now going to ward this to myself to save anyone else the trubble

[Mumble]

Autism (in it's strictest and purest sense) seems to me to be a subconscious selfish condition

I'd like to be the exception that disproves this rule. I do not think (maybe I'm making a bad assessment ) that I'm selfish (unless chocolate's concerned ), in fact I worry so much about what others are thinking and trying to ensure that others are happy and having their needs met, that this comes at a detriment to me.

[GaryS]

I'd like to be the exception that disproves this rule. I do not think (maybe I'm making a bad assessment ) that I'm selfish (unless chocolate's concerned ), in fact I worry so much about what others are thinking and trying to ensure that others are happy and having their needs met, that this comes at a detriment to me.

 

My turn...

 

Exactly, you're not "strictly and a pure" Autistic. Some, probably many, "non-autistic" genes compel you to consider others, consider how they feel and what they want.

 

Maybe as more and more of whatever these "autistic" genes are expressed, the greater the confusion in considering others until eventually the individual rejects all stimuli because they just can't make sense of it.

[baddad]

My turn...

 

Exactly, you're not "strictly and a pure" Autistic. Some, probably many, "non-autistic" genes compel you to consider others, consider how they feel and what they want.

 

Maybe as more and more of whatever these "autistic" genes are expressed, the greater the confusion in considering others until eventually the individual rejects all stimuli because they just can't make sense of it.

 

Well it's an hypothesis.... I don't agree with it, but it's an hypothesis!

 

I think more profoudly autistic people may lack theory of mind to be 'unselfish' - it's not a rejection, it's just not part of who they are, and judgemtns like selfish/unselfish can't be applied. I think that assumptions about what people 'see' in profoundly autistic people and that they see in the behaviours of more able autistic children who just haven't reached that milestone yet (most do by about six, if there's not a learning disability in the mix too) get's appropriated and/or projected onto autistic people as a generalised trait.

 

I can't remember how I put it last time, but it was something like looking at a fish in a pond, then up at a bird in the sky and coming to the conclusion that the fish 'lacks flying'....

 

BUT this IS all way off topic - interesting but off topic. Perhaps if she hasn't stopped reading yet the OP could give an 'okay' to go on in the same vein, or to try and bend things back in the general direction of DSM V?

[coolblue]

The reason I object to "Disorder" (in it's medical sense) is that it implies abnormality. It may be semantic but it's the connotation that the autistic viewpoint is in some way automatically wrong. Autism (in it's strictest and purest sense) seems to me to be a subconscious selfish condition processing the sensory inputs to the best benefits of ones self. The altruistic possibilities may or may not be assessed but ultimately the net effect is self-beneficial. Now we may argue this as being detrimental to wider society and in which case it is outside the norm hence abnormal - but this doesn't mean wrong (to me anyway).

 

 

I think there are real problems in trying to define autism in its 'strictest and purest sense'. Autism is a construct invented by a psychiatrist (Eugen Bleuler) to describe the self-absorbed characteristics seen in schizophrenia, and later applied to two groups of children by Kanner and Asperger. In Asperger's cases the children were very similar to each other in their behaviour; in Kanner's cases they were very varied. The reason both of them thought that the children's difficulty with social skills was a core issue was because both Kanner and Asperger were using a psychodynamic model of human behaviour, in which social interaction was a central feature. Kanner saw the children's difficulties in feeding as infants as part and parcel of their social interaction. Nowadays any language difficulty experienced by a child that had previously had such difficulty suckling that they had to be tube-fed would not be attributed to a problem with social interaction (I hope!), but to a physical problem, possibly with the facial nerves or muscles.

 

The physical characteristics that accompany the behavioural features of autism are essentially overlooked because autistic spectrum disorders/conditions are defined in behavioural terms and classified as 'mental' disorders. This is not a satisfactory state of affairs in my view.

 

cb

[GaryS]

I agree, not satisfactory but at the moment all there is. It will take quite a radical revisiting of the whole series of conditions, including schizophrenia and manic depression/bipolar once the genetic involvement is completely understood.

 

In the mean time it is the responsibility of those trying to care for, help and educate individuals experiencing this complex condition to do just that, irrespective of the classification defined by a series of subjective tests. In my opinion this intervention should be based upon individual need not an abbreviated label.

Edited March 22, 2011 by GaryS

[JsMum]

will everyone with a dx of AS/HFA have to be re-assessed against the new criteria?

 

Thats a valid point therex

 

JsMumx

[JsMum]

ASC

 

 

dibdibdib

 

 

Our area now say ASC but some peoples DX in my area say ASD with brackets of the type of ASD so AS, Autism ect....

 

So what is it, ASD, OR ASC?

 

JsMumx

[GaryS]

I understand the official Dx is ASD=Autistic Spectrum Disorder and AS=Aspergers Syndrome (although some use AS as Autistic Spectrum ). Some regions are using ASC, it may simply be a matter where the diagnostician trained

[Mumble]

I had a chance to ponder this this morning whilst attempting to lie still and think of anything but where I was (in an MRI scanner).

 

I've decided it potentially is very much to do with accompanying learning difficulties (although whether 'IQ' is a valid measure of this, probably not). With learning difficulties, the individual lacks the ability to fully understand and comprehend the world, a world which may seem illogical at the best of times. They may also lack the communicative skills (either through not talking or not being able to explain in a way someone else can understand and help) to explain what they are finding confusing/difficult. Without then having an understanding of the situation, we see a rise in autistic 'behaviours' as either a way of communicating lack of understand / distress, as a way of coping, or as a way of removing oneself from a situation.

 

Let me explain with a concrete example.

 

This morning I had to have an MRI scan. Anyone who has had one or seen someone having one will know that they are claustrophobic, very noisy (it's an incessant hammering noise), you lack contact with others who are behind a glass screen, for mine I had to have some parts of me wedged and others taped.

 

Now I have previously had MRI scans so knew what to expect and as I do have severe anxiety asked specifically about this one and differences. I read about MRIs so that I understood why they make the noise they do. All of this meant that I understood what was happening and it would be predictable, so my 'autistic' behaviours, if you want, were limited. Whilst the noise was horrendous and I wanted to get up and run away, I understood why the noise was made, why the scan was necessary and when it would stop, so I was able to cope (and treat myself with chocolate afterwards!

 

Now, if you put someone else with autism in the same situation who also had learning difficulties and couldn't fully understand what was happening, know how long it was happening for, understand the procedure, or communicate their fears, then I can quite well see this resulting in an escalation of what we term autistic behaviours.

 

The question - does this make the autism itself more or less in either of us? I would hypothesis that it is the interaction of the learning difficulties that brings about a higher incidence of autistic behaviours, and hence learning difficulties are a very real and important aspect of ASDs.

 

Coolblue's post regarding it being the behaviours we label as autism is important - the question is firstly what is the source of these behaviours and secondly what leads to a different presentation in different individuals? Is it the same thing that is different (does that make sense? ) or is it the interaction with other tings that leads to a difference in something underlying that is the same?

 

 

Exactly, you're not "strictly and a pure" Autistic.

I realise this is just a hypothesis, but it's one I would be quite unhappy to have applied for me and the resultant implications for others. It suggests that some people are all autistic and nothing else whilst some (like me apparently!) only have a little bit because I appear articulate. That doesn't mean I'm not autistic however, and I think it risks straying into the mild etc. categories which have the potential to be damaging. It also takes away the rest of someone's personality if they are deemed "strictly and a pure" autistic, because even with severe autism, there is still so much more to that individual's life.

[GaryS]

 

The question - does this make the autism itself more or less in either of us? I would hypothesis that it is the interaction of the learning difficulties that brings about a higher incidence of autistic behaviours, and hence learning difficulties are a very real and important aspect of ASDs.

 

Phew this could really take the discussion well off topic someone stop us!

 

I feel the problem is that as I said the two are distinct, they have major overlap as the neurological effects of autism will necessarily create learning difficulties, not because of ability but due to an innate reluctance to interact for whatever reason. So using your example of the scanner (not serious I hope BTW) You don't have a "learning disability" in this sense because you allowed interaction to understand the process which will remove the fear. In a more "pure" autism, the pain vs. gain assessment may be insufficient to trust the outside would enough to learn there is nothing to fear. My concept here are trying to separate a true "low intelligence" aspect of learning difficulties where the individual is incapable of leaning simply due to that low intelligence; from an inability to learn due to rejection of the methodology of learning as the individual rejects the necessary interaction. In the first example there is a limited scope for learning, in the second the scope can be enormous if the correct interaction can be found.

 

 

I realise this is just a hypothesis, but it's one I would be quite unhappy to have applied for me and the resultant implications for others. It suggests that some people are all autistic and nothing else whilst some (like me apparently!) only have a little bit because I appear articulate. That doesn't mean I'm not autistic however, and I think it risks straying into the mild etc. categories which have the potential to be damaging. It also takes away the rest of someone's personality if they are deemed "strictly and a pure" autistic, because even with severe autism, there is still so much more to that individual's life.

 

I'm sorry I don't wish to offend at all here, it is just a hypothesis. You're right, the hypothesis does imply that there is the possibility of "total autism" and more to the point observations of virtually that is exactly where the hypothesis began. Our DS is what would be considered by any criteria "Severely Autistic" in fact that's his Dx. He has several other medical conditions but a real problem in terms of assessing functionality and his ability to learn is that he also has Severe Epilepsy and is Brain Damaged, probably due to hypoxia after infantile seizures. His epilepsy goes in phases occasionally there are periods where his autism takes precedence in his general behaviour at other times it is completely masked. He is now 21 and I've known him for just over ten years and seen the improvement/regression that is typical in the teen years. So history over, I live day to day with an example of almost "pure" autism, he doesn't always sit rocking in the corner, he isn't always engaging but can be even during his epilepsy free periods. It is very difficult to differentiate between the two aspects of behaviour but as I'm sure you know, you your kids.

 

I wouldn't presume to say anything about your autistic traits, or the severity or otherwise, but the mere fact that you are able to string a few words together (well actually quite a lot and very eloquently ) dictates that you are far from a "pure" autistic state and I'm not trying to be derogatory in any way. (Actually I think that most people who are addicted to forums are on the spectrum somewhere!) Taking you last point regarding a persons personality, one of my wilder my theories is that an individuals personality is actually driven by the mixed expression of the "autistic genes" and how the individual learns during their development which of course is governed by them. I whole new topic I feel!

 

and I think it risks straying into the mild etc. categories which have the potential to be damaging.

 

Interesting, "potential to be damaging" why use that phrase specifically?

Edited March 23, 2011 by GaryS

[Mumble]

:shame: I'm supposed to writing (and not here) - stop writing interesting thoughts that leave me pondering and feeling the need to respond!!

 

My concept here are trying to separate a true "low intelligence" aspect of learning difficulties where the individual is incapable of leaning simply due to that low intelligence; from an inability to learn due to rejection of the methodology of learning as the individual rejects the necessary interaction. In the first example there is a limited scope for learning, in the second the scope can be enormous if the correct interaction can be found.

That's interesting - I hadn't thought about the inability to obtain information in that way. I suppose then we'd have to question why there are differences in individuals' (here I would be talking about autistic individuals, but I guess we could include anyone) openness to interaction. Also, I think this can be changeable due to other influences - be that other conditions or environmental influences - (for instance I'm finding social interaction a lot harder just at the moment (thank goodness for forums!! ) because I have a lot of medical stuff going on and it's draining on my coping resources; I use what I can to get through what I need to do, but then don't have any extra 'left' to cope with the niceties of having coffee with someone, talking to other students at dinner etc.

 

Interesting, "potential to be damaging" why use that phrase specifically?

Only in relation to the discussion many moons ago in this thread regarding the proposal to include subdivisions of 'mild', 'moderate' and 'severe' and my concern as to the layman's understanding (and response) if someone is labelled as mild. What does mild mean anyway - problems weren't there in the first place (or were 'mild') or the individual has developed coping strategies - which then brings in the possibility (or rather ignores the possibility) that the same individual could experience a crisis situation and their issues would be far from mild, but because they were coping when they were sub-labelled, services are not deemed necessary. To use a metaphor (I know how you NTs love 'em! ) - labelling someone as mild has the potential to remove a very necessary safety net. They may not fall as often, but are potentially walking on a much higher-wire (living independently etc.) and the potential for damage if they fall without a safety-net is therefore more possibly than those walking the tightrope low down with consistent support of a balance pole. I think it's about being able to react to changing individuals rather than trying to box them into three boxes and deciding what each box needs in a uniform manner.

 

And now, please, may I have my star for metaphor use. :lol:

[coolblue]

In my opinion this intervention should be based upon individual need not an abbreviated label.

 

Hear, hear!

 

cb

[GaryS]

:shame: I'm supposed to writing (and not here) - stop writing interesting thoughts that leave me pondering and feeling the need to respond!!

 

 

That's interesting - I hadn't thought about the inability to obtain information in that way. I suppose then we'd have to question why there are differences in individuals' (here I would be talking about autistic individuals, but I guess we could include anyone) openness to interaction. Also, I think this can be changeable due to other influences - be that other conditions or environmental influences - (for instance I'm finding social interaction a lot harder just at the moment (thank goodness for forums!! ) because I have a lot of medical stuff going on and it's draining on my coping resources; I use what I can to get through what I need to do, but then don't have any extra 'left' to cope with the niceties of having coffee with someone, talking to other students at dinner etc.

 

 

Only in relation to the discussion many moons ago in this thread regarding the proposal to include subdivisions of 'mild', 'moderate' and 'severe' and my concern as to the layman's understanding (and response) if someone is labelled as mild. What does mild mean anyway - problems weren't there in the first place (or were 'mild') or the individual has developed coping strategies - which then brings in the possibility (or rather ignores the possibility) that the same individual could experience a crisis situation and their issues would be far from mild, but because they were coping when they were sub-labelled, services are not deemed necessary. To use a metaphor (I know how you NTs love 'em! ) - labelling someone as mild has the potential to remove a very necessary safety net. They may not fall as often, but are potentially walking on a much higher-wire (living independently etc.) and the potential for damage if they fall without a safety-net is therefore more possibly than those walking the tightrope low down with consistent support of a balance pole. I think it's about being able to react to changing individuals rather than trying to box them into three boxes and deciding what each box needs in a uniform manner.

 

And now, please, may I have my star for metaphor use. :lol:

 

<img src="http://www.psdgraphics.com/file/gold-star-graphic.jpg" height="50" width="50">

Sorry, forum refuses to accept your Gold Star for outstanding metaphor use, have this instead

 

Eer! who you callin' NT? Not that I care really - I don't know what the hell I am (or care actually).

I understand what you're saying now although philosophically I'd like mild/moderate/severe to work, practically it wouldn't. Alongside your description of "mild" as usually coping we could align "moderate" as cope with support and "severe" as usually won't cope, (whatever cope means).

Edited March 23, 2011 by GaryS

[Mumble]

I understand what you're saying now although philosophically I'd like mild/moderate/severe to work, practically it wouldn't. Alongside your description of "mild" as usually coping we could align "moderate" as cope with support and "severe" as usually won't cope, (whatever cope means).

Just to make things a bit more confusing, that would work only is dealing with Autism and no co-morbids or other conditions. Once things get messy (and I suspect this is the case to some degree for all) it's very difficult to say what difficulties/support needs are directly attributable to the autism and what comes about due to the interaction of everything else.

 

For instance, as I've been using me as a case so far, I will continue. I would assume that in having a dx of HFA I would be classed 'mild' and therefore as usually coping (and probably as far as services go, not needing support ). However, due to other issues (mainly medical) I have, I actually have a very high degree of support and need support quickly available 24 hours a day. Whilst some are medical needs, the autism results in specific difficulties in my dealing with them, for instance I can't get help easily or recognise the signs that things are going wrong / communicate difficulties easily, and I have people check on my daily to identify issues before they become a problem. So where do you put me - take away that care and my autism 'behaviours' could very likely become extreme to the extent I would be a danger to myself .

 

 

p.s. Very upset at my missing gold star, can I have a silver one instead please?

[GaryS]

Just to make things a bit more confusing, that would work only is dealing with Autism and no co-morbids or other conditions. Once things get messy (and I suspect this is the case to some degree for all) it's very difficult to say what difficulties/support needs are directly attributable to the autism and what comes about due to the interaction of everything else.

 

For instance, as I've been using me as a case so far, I will continue. I would assume that in having a dx of HFA I would be classed 'mild' and therefore as usually coping (and probably as far as services go, not needing support ). However, due to other issues (mainly medical) I have, I actually have a very high degree of support and need support quickly available 24 hours a day. Whilst some are medical needs, the autism results in specific difficulties in my dealing with them, for instance I can't get help easily or recognise the signs that things are going wrong / communicate difficulties easily, and I have people check on my daily to identify issues before they become a problem. So where do you put me - take away that care and my autism 'behaviours' could very likely become extreme to the extent I would be a danger to myself .

 

 

p.s. Very upset at my missing gold star, can I have a silver one instead please?

 

Ah! co-morbid... IMO an artifact of classification. My model is that they are all varying presentations of the same range of genetic code. The classification system (which is how we got here) identifies them as different (behaviourally) so when they present together they must be co-morbid. IMO Poppycock! That's like saying there are two colours red and blue. Purple things are actually red co-morbid blue or visa-versa. My basic premise is that all of the spectrum of conditions can be presented to a differing degree. It is DSM and everyone else's attempt to classify them as separate entities occurring together?

 

Trying another method of giving you your well deserved star.

 

http://www.psdgraphics.com/file/gold-star-graphic.jpg

[Mumble]

Ah! co-morbid... IMO an artifact of classification. My model is that they are all varying presentations of the same range of genetic code. The classification system (which is how we got here) identifies them as different (behaviourally) so when they present together they must be co-morbid. IMO Poppycock! That's like saying there are two colours red and blue. Purple things are actually red co-morbid blue or visa-versa. My basic premise is that all of the spectrum of conditions can be presented to a differing degree. It is DSM and everyone else's attempt to classify them as separate entities occurring together?

Thanks for the star. I can kind of see what you are saying, and I certainly question which bits of some of my difficulties are due to Autism and which to Dyspraxia. However (and this is a big however for me), I'm very uncomfortable with people who say all conditions (i.e. dyspraxia, dyslexia) alone are on the autistic spectrum. They ain't, simple as that, and it totally negates the real difficulties of autistic individuals to say that someone with fairly mild dyslexia is autistic.

[RainbowsButterflies]

I've just read something on another forum and oh my goodness! It would never have occurred to me that people would be snobby about having AS rather than autism - to me it's one and the same thing (well I know you have classic autism as well but you know what I mean).

 

I'm just baffled...

[GaryS]

...to say that someone with fairly mild dyslexia is autistic.

 

 

Sorry, I'm not communicating - I'm not saying that. I'm saying that dyslexia is perhaps a little bit of "autistic gene expression" which slightly affects the recall or recognition feedback of a pattern matching exercise we call reading. Well that's part of what I'm saying and hey - it's just a wacky theory.

[GaryS]

I've just read something on another forum and oh my goodness! It would never have occurred to me that people would be snobby about having AS rather than autism - to me it's one and the same thing (well I know you have classic autism as well but you know what I mean).

 

I'm just baffled...

 

Oh yea - don't get me on the general acceptance of AD/HD and several other flavours in this eclectic band of beings.

[baddad]

I've just read something on another forum and oh my goodness! It would never have occurred to me that people would be snobby about having AS rather than autism - to me it's one and the same thing (well I know you have classic autism as well but you know what I mean).

 

I'm just baffled...

 

That's because AS is just, like, artistic super-smart and quirky, yer know... pretty cool, actually, yuh. No, don't get me confused with those other guys, you know, the 'Rainman' bunch... Yeah. Oh, yeah, well not official, ya know, but I've always been 'different'. And I did this online test on, like, Facebook... Did they have plain old 'AS' or new-variant 'High Functioning AS?' There's a big difference, you know, like Leonard as opposed to Sheldon...

 

Sorry, that probably sounds a bit bitchy. Oh yes - but they started it so it's okay!

 

SERIOUSLY, and not as a disclaimer, these are not my views on AS. They are my views on what I think AS has become for many people and is in danger of becoming for many more. It is not a 'judgement' on anyone who thinks they might be on the spectrum or anyone who became curious about the possibility that they might be after completing a Facebook (or any other) online test. I just think if you've got someone with an autistic spectrum disorder making 'snobby' judgements about others with autistic spectrum disorders on a forum for autistic people then it's probably an indication that defintions have got a bit too broad for anybody's comfort. I think I might have said something like that before sometime?

 

Thanks for the 'heads up' rainbow. I'm in total agreement with you, AS is autism, and if it isn't then it isn't AS or Autism. That's why i'm not enthusiastic about DSM V, 'cos if we do away with AS then the distinction them snobs is making is going to evolve into 'HFA' and erode the real meaning even further.

 

Gary S - don't get me started on ADHD - that really makes my blood boil!

 

L&P

 

BD

[coolblue]

Ah! co-morbid... IMO an artifact of classification. My model is that they are all varying presentations of the same range of genetic code. The classification system (which is how we got here) identifies them as different (behaviourally) so when they present together they must be co-morbid. IMO Poppycock! That's like saying there are two colours red and blue. Purple things are actually red co-morbid blue or visa-versa. My basic premise is that all of the spectrum of conditions can be presented to a differing degree. It is DSM and everyone else's attempt to classify them as separate entities occurring together?

 

 

The three behavioural domains that make up 'autism' are all highly complex. That means that there are many potential routes to their disruption. Sometimes a single gene can express itself in many different functions. Sometimes the expression of many genes converges on a single process. Depending on the processes a gene is involved in, it's possible for one gene to cause autism (as in PKU or Fragile X) or for several genes to cause it.

 

The problem is with the concept of 'autism'. Yes, some people do meet the criteria for autism, but that doesn't mean they have 'a' condition which we happen to call autism. What they have is outcomes of their gene expression or physiology that result in disruption to certain aspects of their behaviour.

 

A diagnosis of 'autism' is akin to a diagnosis of 'respiratory disorder'. There's no doubt that patients with respiratory disorders could all have a cough, difficulty breathing and fluid on their lungs. It doesn't mean they all have the same thing wrong with their breathing apparatus. 'Respiratory disorder' is a useful label for some purposes, but no self-respecting medic would stop there when trying to find out what was causing a patient's health problems.

[GaryS]

The three behavioural domains that make up 'autism' are all highly complex. That means that there are many potential routes to their disruption. Sometimes a single gene can express itself in many different functions. Sometimes the expression of many genes converges on a single process. Depending on the processes a gene is involved in, it's possible for one gene to cause autism (as in PKU or Fragile X) or for several genes to cause it.

 

The problem is with the concept of 'autism'. Yes, some people do meet the criteria for autism, but that doesn't mean they have 'a' condition which we happen to call autism. What they have is outcomes of their gene expression or physiology that result in disruption to certain aspects of their behaviour.

 

A diagnosis of 'autism' is akin to a diagnosis of 'respiratory disorder'. There's no doubt that patients with respiratory disorders could all have a cough, difficulty breathing and fluid on their lungs. It doesn't mean they all have the same thing wrong with their breathing apparatus. 'Respiratory disorder' is a useful label for some purposes, but no self-respecting medic would stop there when trying to find out what was causing a patient's health problems.

 

That's exactly what I'm saying. The complexities of the expression of a (probably) wide number of genes produces a wide range of behaviours/physical conditions many of which may labelled as autistic or autistic like. You mention Fragile-X, it the study of this condition (but not exclusively) I think that will shed more light on what autism is all about. Although I appreciate there have been a number of Autism Dx for children who a have PKU I wouldn't say that it was causative, conditions resulting from point mutation is probably (IMO) co-committal in this process. likewise tuberous sclerosis and 15q duplications (and perhaps others) which have also been mentioned alongside autism.

 

If we consider that the "error point" is at meiosis, there may be a number of periods in transcription, cross-over or recombination at which the event occurs. Hence there may be many instances where hereditary, single point, complex repeat or insertion mutations are introduced or carried whilst the range of "autism causing" genetic constructs are either being created of passed along completely independently.

 

The difficulty here, is as yet we don't understand the physical changes which cause the symptoms. While there are many different observations including minicolumns, pyramid cells, short-range axons, altered synaptic receptors etc. there is no coherent and reproducible theory that can define the underlying cause, and little chance of identifying the genetic pattern.

 

So we are left with characterising this range of condition purely by their symptoms and trying to group them together to form a diagnosis. I think your analogy with Respiratory Disorder is a good one but not perhaps for the reason you use. If someone has a cough with discoloured sputum, another with no colouration and still another without congestion does this mean there are three different Dx required?