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Verdandi
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10 Aug 2012, 1:02 am

btbnnyr wrote:
It seems like studies keep popping up this year, showing that lots of people all over the spectrum will be undiagnosed by the DSM-V. I just saw one showing that 36% of adults on the spectrum with intellectual disability will be undiagnosed. All the studies seem to show that PDD-NOS will have a huge drop, like only a small minority of people currently diagnosed with PDD-NOS would meet the ASD criteria, based on the greater number of criteria required.

Looking at the criteria themselves, I don't know why so many people would be undiagnosed. It doesn't seem like it would be difficult for an autistic person to meet the new criteria. The severity levels don't seem that stringent either.


Many of these studies use older studies to hypothetically diagnose the subjects of those studies with ASD, and are not entirely predictive. According to the proponents for the new ASD diagnosis, most people shouldn't lose their diagnosis.



Verdandi
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10 Aug 2012, 1:12 am

Regarding the above, I do not know if that is true, I only know that someone involved with the new criteria made that statement.



Jasmine90
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10 Aug 2012, 1:50 am

What the hell, that sounds more like social anxiety. Most of us aspies suffer from a whole array of issues, not JUST social incompetence.
How do you fit special interests into the whole social communication disorder equation? IT'S NOT JUST SOCIAL for crying out loud.

If this is true, then it really angers me, because it seems they will only be ignoring so many problems regarding aspergers.



Verdandi
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10 Aug 2012, 2:15 am

Jasmine90 wrote:
What the hell, that sounds more like social anxiety. Most of us aspies suffer from a whole array of issues, not JUST social incompetence.
How do you fit special interests into the whole social communication disorder equation? IT'S NOT JUST SOCIAL for crying out loud.

If this is true, then it really angers me, because it seems they will only be ignoring so many problems regarding aspergers.


Any statement that the DSM-5 will move AS into social communication disorder is not accurate. The intention is for people with an ASD diagnosis currently to fit into the ASD criteria in the DSM-5.



Rascal77s
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10 Aug 2012, 2:53 am

As I understand it SCD will be used for most people with PPD-NOS and some people with AS. The key difference will be repetitive and stereotyped interests.



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10 Aug 2012, 4:40 am

She's wrong.

Asperger's has always been equally defined as having the repetitive behaviors of autism just as much as the social disability of autism, which as seen in the DSM-V [above], rules one out for social communication disorder.

(Also, I always take offense to her calling me a geek. I'm not a geek, or any other social descriptor of the majority.)



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10 Aug 2012, 5:00 am

It looks to me like people with a current AS or PDD-NOS diagnosis will now simply be grouped into the ASD category, rather than having a separate name. So instead of being diagnosed as AS or PDD-NOS you will now be simply ASD - Autistic Spectrum Disorder. Only those with very severe PDD-NOS who don't meet the criteria for anything else will still be considered PDD-NOS. The rest won't lose the PDD-NOS diagnosis, but be considered ASD instead.

SCD will be for the people who have social and language difficulties but not the repetitive behaviours or love of routines or sensory difficulties etc.

Sounds OK, but I think it's a shame the "Asperger's" name will disappear, I was just starting to like it. I just want to know if you will have to be re-diagnosed to attain this ASD diagnosis or whether your AS will automatically be considered ASD instead.



nessa238
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10 Aug 2012, 5:12 am

Temple Grandin is speculating on what she thinks is likely to happen as regards some people with a milder presentation of Aspergers (or whatever they've got) being diagnosed with Social Communication Disorder as opposed to Asperger's Syndrome/an autistic spectrum disorder. She's not stating facts.

Prior to my own diagnosis (which I didn't seek out myself) a friend showed me an article about Asperger's Syndrome and said perhaps he and I might have it. Reading through the Asperger's criteria I could see some similarities but there was a lot that I didn't relate to. I had presumed I had social anxiety/social phobia and was a member of a social anxiety discussion board and had been to several social anxiety meet-ups. While we had social anxiety in common I did think that my 'problem' was of a different nature/more profound but I couldn't define exactly how.

So if I'd seen this diagnosis of Social Communication Disorder I'd most likely have thought I might have it. The trouble with these diagnoses is that they use words like 'pragmatic', which I've never understood the meaning of and this type of thing tends to make me switch off as I don't relate it to myself.

It's the same with the repetitive behaviours/sensory issues thing in autism/Aspergers. At what exact stage does a repetitive behaviour become something out of the ordinary? Everyone does numerous actions repetitively - breathing, eating, laughing - loads of things. Many people visit the pub repetitively, shop, talk about football, sex, celebrities and drinking repetitively (if not obsessively!), fight repetitively, steal, shout - the list goes on! Lots of people have hobbies that they do repetitively. So this repetitive behaviours thing was meaningless to me and I didn't relate to it. It seems to me that it's fine to do anything repetitively if the majority also do it - it's only when the repetitive behaviour is something less common that the majority seems to have a problem with it and see it as 'weird' or a problem. So in my opinion it's not repetitive behaviour per se that is the problem; it's the nature of the behaviour so this implies to me that it's not about repetitiveness at all. It's all about enforcing conformity.

Same with sensory issues. If bright sunlight shines in my eyes it makes me have to look away, if a loud noise occurs near me it can make me jump and depending on the pitch of the noise it can irritate me a lot. But this goes for many people - it's human behaviour and I know that human behaviour varies a lot. You don't need a label for every variation and degree of human behaviour. I don't need it for myself anyway.

Hence I am a perfect example of a person who was diagnosed with Asperger's Syndrome, who didn't relate to the description of Asperger's Syndrome when I read about it, but who would have related more to the Social Communication Disorder diagnosis (if it had existed). But I wouldn't have felt any need to get a formal diagnosis of it as I wouldn't see the point.



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10 Aug 2012, 5:28 am

I think they've probably found that people with AS can be categorised into two groups; those with the sensory difficulties and repetitive behaviours, and those without. I would guess that's the reason why they're making the new SCD and combining AS into the ASD. If you don't have the characteristics (need for routine, sensory difficulties etc) it's not true autism. People with AS but without the repetitive behaviours/need for routine would find it very difficult to get the diagnosis and not completely fit it if they do get it. I think overall it's a good thing, but it annoys me that most people are going to have to be re-assessed or re-diagnosed. What a waste of time. They should only have to go through that if the diagnosis is in doubt.

I see no reason why they should get rid of the AS, it already is classified as an ASD. I suppose they just want all the people diagnosed to be re-assessed so they can fix their mistakes in regards to those with AS, and those who have been diagnosed with As but really should have been SCD.



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10 Aug 2012, 12:15 pm

Patchwork wrote:
Only those with very severe PDD-NOS who don't meet the criteria for anything else will still be considered PDD-NOS. The rest won't lose the PDD-NOS diagnosis, but be considered ASD instead.


Try again, PDD-NOS is fully removed from DSM-V. PDD-NOS was a diagnostic cop-out, you haven't met the criteria for autism, but autism is closer to your issues than anything else in the diagnostic manual, therefore we'll call it PDD-NOS.

PDD-NOS did have some uses, lack of evidence of life long symptons/behaviours or no RRBs. Perhaps it is more appropriate to use SCD for these people,

Jason



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10 Aug 2012, 12:52 pm

I recently had a non-clinical assessment for AS. The assessor, who has AS herself, has a son with AS, has degrees in autism and publishes books on AS, gets invited to AS/autism conferences etc., told me that AS is simply going to included in the autism spectrum, people won't lose their diagnoses.


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11 Aug 2012, 12:34 pm

I'm most of the way through a new audiobook - Bright not Broken (Grandin, Dianne Kennedy and Rebecca Banks). Through this book, this article is beginning to make a lot more sense.

The book it is very critical of the DSM and ADHD in particular, the main argument is that the DSM encourages an "alphabet soup", eg: ADHD+ANXIETY+OCD+etc.

Their issue with ADHD is that it is hardly ever given as a standalone diagnosis. According to the authors it's pretty typical to end up with additional co-morbids such as anxiety, OCD etc. With DSM V we could then add SCD to this list. If someone is presenting as: ADHD+ANXIETY+OCD+SCD. Then they would meet the requirements for what we currently know as AS.

ADHD acts as a gateway initial diagnosis, as the presentation changes with other features, they bolt on additional diagnoses. As ADHD appears to be diagnosed by school psychologists and supposedly confirmed by a positive response to stimulant medication, it's exceptionally difficult to get a fresh look at this persons profile that should be a straightforward AS diagnosis.

We regularly have in-depth discussions here on any overlap between ADHD and AS. I'm in the camp that believes that ADHD-PI and AS are the same disorder. There is far more stigma attached to ADHD, plus there is a great deal more support and research available for AS, so this is very damaging to those diagnosed with ADHD.

Jason.



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11 Aug 2012, 1:08 pm

Jtuk wrote:
I'm most of the way through a new audiobook - Bright not Broken (Grandin, Dianne Kennedy and Rebecca Banks). Through this book, this article is beginning to make a lot more sense.

The book it is very critical of the DSM and ADHD in particular, the main argument is that the DSM encourages an "alphabet soup", eg: ADHD+ANXIETY+OCD+etc.

Their issue with ADHD is that it is hardly ever given as a standalone diagnosis. According to the authors it's pretty typical to end up with additional co-morbids such as anxiety, OCD etc. With DSM V we could then add SCD to this list. If someone is presenting as: ADHD+ANXIETY+OCD+SCD. Then they would meet the requirements for what we currently know as AS.

ADHD acts as a gateway initial diagnosis, as the presentation changes with other features, they bolt on additional diagnoses. As ADHD appears to be diagnosed by school psychologists and supposedly confirmed by a positive response to stimulant medication, it's exceptionally difficult to get a fresh look at this persons profile that should be a straightforward AS diagnosis.

We regularly have in-depth discussions here on any overlap between ADHD and AS. I'm in the camp that believes that ADHD-PI and AS are the same disorder. There is far more stigma attached to ADHD, plus there is a great deal more support and research available for AS, so this is very damaging to those diagnosed with ADHD.

Jason.


I'm surprised that you think there is more stigma attached to ADHD than Aspergers. I would have assumed it was the other way round as ADHD isn't associated with autism. In my opinion a lot of ADHD is due to children not being disciplined, due to the law changing on smacking children. More discipline in the home and school would mean less ADHD. It was unheard of when I was at school.



Jtuk
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11 Aug 2012, 1:27 pm

nessa238 wrote:
I'm surprised that you think there is more stigma attached to ADHD than Aspergers. I would have assumed it was the other way round as ADHD isn't associated with autism. In my opinion a lot of ADHD is due to children not being disciplined, due to the law changing on smacking children. More discipline in the home and school would mean less ADHD. It was unheard of when I was at school.


You finished that paragraph by blaming it on bad parenting, there is the stigma. You've also made an association between ADHD and disruptive behaviour. These are common views and stereotypes.

AS has a pretty clean slate. Most people are unaware of what the condition is. You might hear it mentioned, but it doesn't have any of the associations that ADHD has. A few are starting to appear, e.g. Gary McKinnon / Hacking, but if anything the common associations are with genius. Unhelpful, Incorrect, but not negative.

There is also help available. In the UK we have an Autism Act in law. In my county/state (it's pretty small population), but we have around a dozen people working for the state supporting ASD. That's 12 people helping the 500 or so people in the county with employment issues and welfare. We have an ASD policy and strategy. There is none of this for ADHD.

Jason.



nessa238
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11 Aug 2012, 1:54 pm

Jtuk wrote:
nessa238 wrote:
I'm surprised that you think there is more stigma attached to ADHD than Aspergers. I would have assumed it was the other way round as ADHD isn't associated with autism. In my opinion a lot of ADHD is due to children not being disciplined, due to the law changing on smacking children. More discipline in the home and school would mean less ADHD. It was unheard of when I was at school.


You finished that paragraph by blaming it on bad parenting, there is the stigma. You've also made an association between ADHD and disruptive behaviour. These are common views and stereotypes.

AS has a pretty clean slate. Most people are unaware of what the condition is. You might hear it mentioned, but it doesn't have any of the associations that ADHD has. A few are starting to appear, e.g. Gary McKinnon / Hacking, but if anything the common associations are with genius. Unhelpful, Incorrect, but not negative.

There is also help available. In the UK we have an Autism Act in law. In my county/state (it's pretty small population), but we have around a dozen people working for the state supporting ASD. That's 12 people helping the 500 or so people in the county with employment issues and welfare. We have an ASD policy and strategy. There is none of this for ADHD.

Jason.


Aspergers doesn't have a clean slate:-

http://www.standard.co.uk/news/asperger ... 01617.html

http://www.dailyrecord.co.uk/news/scott ... th-1034994

http://www.mirror.co.uk/tv/tv-previews/ ... ife-939040

http://local.stv.tv/glasgow/200100-six- ... nto-woman/

http://news.bbc.co.uk/1/hi/england/leic ... 958699.stm

I'd say a fair majority of interest and funding as regards Aspergers Syndrome/HFA is focused on the forensic research and secure accommodation side - that seems to be where most funding goes ie on secure placements when people with Aspergers/ASDs commit crimes.



Last edited by nessa238 on 11 Aug 2012, 1:57 pm, edited 1 time in total.

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11 Aug 2012, 1:55 pm

This looks interesting. I don't have time to watch it now, but thanks for the links.