DSM5 ASD "Essentially Everyone Gets In"

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aghogday
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12 Dec 2012, 6:11 am

I just came across information that apparently the final revision of DSM5 Autistic Spectrum Disorder is different than the last publicly released revision, as "diagnostic history", yesterday, was described in the New York Times as added in as part of the parameters for a diagnosis, and Catherine Lord provided some interesting quotes that warrant further details.

http://www.nytimes.com/2012/12/11/healt ... d=all&_r=0


Quote:
The new, streamlined definition was approved, but with language that took into account a person’s diagnostic history. “It’s explicit that anyone who’s had an Asperger’s or autism or PDD-NOS diagnosis before is now included,” said Catherine Lord, a committee member who worked on the new definition and who is director of the Center for Autism and the Developing Brain in New York. “Essentially everyone gets in"



Catherine Lord is an interesting wordsmith. Essentially everyone gets in means most everyone will get in, but does not guarantee that everyone WILL get in, or quantify who essentially everyone is in the context of their diagnostic history. She could mean those are included who were earlier diagnosed with all the new current mandatory requirements of behavioral impairments in the historical diagnostic record and can be administratively placed under the new diagnostic label with or without a current re-assessment. However, it's not likely that the DSM5 could force this administrative work on private professionals without a fee paid by someone, if that is what is meant by her quotes.

Her recent study indicated that only 10 percent would lose a diagnosis if re-assessed based on clinical records, so technically her quote would be in the ball park of essentially everyone gets in, if her research results reflect the larger world of clinical records; which at this point is speculative at best.

These are questions that need to be answered by the APA, to get the details and further explanation, because "essentially everyone gets in", could mean a number of things, specific to a further context of what is meant by diagnostic history, as that was not included in her actual quote, in the article.

There is also the potential that there were other changes, in the DSM5 final revision of Autistic Spectrum Disorder, to be published in the Spring of 2013.



Rascal77s
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12 Dec 2012, 7:24 am

Good find aghogday. So basically what she's saying is if you have a DX prior to dsm5 you're grandfathered into autism. So what about the people that don't have a pre-dsm5 dx? I have this strange feeling of being paid off to keep my mouth shut.



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12 Dec 2012, 8:34 am

Draft diagnostic guidelines are raising concerns that mild forms of the disorder may no longer be recognized.

Article by Emily Singer, November 2012

Quote:
The more controversial change in the DSM-5 is to bring together a number of formerly distinct disorders under the single heading of autism. The DSM-IV recognized several disorders as being distinct, including classical autism, Asperger's syndrome and pervasive development disorder not otherwise specified (PDD-NOS) — a category that applies to many children who meet some, but not all, of the criteria for autism. Some autism researchers say there is little scientific basis for defining these as different disorders. “Replicable research findings show that it's almost impossible to discriminate people with autism from Asperger's syndrome if you control for intelligence and language level,” says Lord. As for PDD-NOS, “when you look at the research, it's basically less severe autism,” she says. “No one has come up with characteristics that pull out that group.”

One potential impact of the redefinition that its opponents have cited is that some people with Asperger's syndrome and PDD-NOS will no longer qualify for an autism diagnosis and the support services that come with it. For example, Volkmar and his collaborators reanalysed data collected via questionnaires for the DSM-IV field trials4, linking it to criteria outlined in the DSM-5. Their 2012 analysis suggests that only about 60% of 1,000 people diagnosed with autism in 1994 under DSM-IV would meet the new diagnostic criteria.

A handful of studies published over the past year support Volkmar's concern5, 6, 7, 8. “All show a big drop off in numbers of people diagnosed with ASD under the DSM-5,” says Johnny Matson, a psychologist at Louisiana State University in Baton Rouge and author of some of these studies. “I would rather see a tweak than a major change.”

But critics of these studies point out that they are retrospective, meaning they used old data, often from limited questionnaires. Some of the symptoms in the new guidelines, such as sensory deficits, may simply not have been collected in the past. The result, they say, is that individuals who would meet the diagnostic criteria if assessed today would not be considered autistic based on the previously collected information. Retrospective studies are “always going to underestimate sensitivity, because they didn't ask all the questions”, says Lord.

The Volkmar study was “fatally flawed because it used data to do the analysis that couldn't answer questions being asked”, says Swedo. “Just because you have an idea of how a child met criteria for the DSM-III or DSM-IV doesn't mean it can be applied to the DSM-5.”

A new study, published this month in the American Journal of Psychiatry by Lord and collaborators, uses a much richer data set to show that the new guidelines are just as sensitive as the DSM-IV and unlikely to exclude many9.

Experts on both sides agree that the real answer will come from prospective studies, meaning that new data will be collected as participants are simultaneously evaluated with the DSM-IV and the DSM-5. “We won't know until [results from those] trials are published,” says Ozonoff.

Such research is now underway. The research and advocacy organization Autism Speaks is funding a prospective study, as is the American Psychiatric Association (APA), which publishes the DSM. Preliminary results from the APA field trials, presented at the International Meeting for Autism Research in Toronto in May 2012, are in line with Lord's study and suggest that the new guidelines are unlikely to exclude many people with an ASD.

Ozonoff, who is broadly supportive of the DSM-5 guidelines, says one flaw is the creation of a diagnostic category called pragmatic, or social, communication disorder. This label will apply to children who show some of the social communication deficits of autism but not the repetitive and restrictive behaviours. These children are often diagnosed with PDD-NOS. Unpublished data from Skuse's group suggest that about one-third of those people are likely to be shifted to social communication disorder. “It seems very similar to autism spectrum disorder,” says Ozonoff. “I wonder about the rationale for creating a new diagnosis unless we have good data that it's different.” Just as Asperger's syndrome came and went as a form of autism, the same trajectory may be in store for this latest subcategory.

The only way to resolve the dispute is more research, says Volkmar, who in the 1980s helped evaluate the current criteria in the fourth edition. “Ultimately,” he says, “it's not a point for opinion — it's a point for data.”


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aghogday
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12 Dec 2012, 3:59 pm

Rascal77s wrote:
Good find aghogday. So basically what she's saying is if you have a DX prior to dsm5 you're grandfathered into autism. So what about the people that don't have a pre-dsm5 dx? I have this strange feeling of being paid off to keep my mouth shut.


"Essentially everyone get's in" sounds like they've decided to include essentially everyone with an existing diagnosis in "a club", but I don't think we are hearing the full story yet. I'm pretty sure the APA will be pressed for more details, because it does sound like some type of grandfathering provision, however the essentially part, sounds like it could potentially exclude some.



aghogday
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12 Dec 2012, 8:03 pm

Only a little over a week ago another DSM5 working group Member, Dr. Bryan King, in an article from CNN linked below, provided no indication that there was any general requirement to grandfather anyone in under the new diagnosis, and suggested that the APA and other organizations should offer guidelines in the future to only require a re-diagnosis under the new definition when clinically necessary.

He doesn't specifically address those currently diagnosed with Asperger's syndrome in the article, as his comments are specific to the issues of those currently diagnosed with Autistic Disorder.

I can't see why Dr. King would be not be privy to the final revision of DSM5 ASD with the reference to account of diagnostic history, and Catherine Lord would, as they were both part of the DSM5 working group.

http://www.cnn.com/2012/12/02/health/new...index.html


Quote:
Going forward in his practice, King says he will use the new criteria, but he's not going to retrospectively rediagnose patients. So in his practice, nobody will lose their autism diagnosis.

"We have people waiting months for an autism diagnosis," King says. "There's no way and no place for clogging the diagnostic wait lists for people to get rediagnosed for administrative purposes."

He hopes the APA and other organizations will provide formal recommendations that provide instructions for clinicians to only re-evaluate a patient diagnosed with an autism spectrum disorder under the current definition, if there's a clinical reason to so.



Dillogic
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12 Dec 2012, 8:12 pm

As far as I'm aware, people have always been grandfathered (unless there was some massive change to the criteria), i.e., if you were diagnosed with Autism in the DSM-III, you still had it when the DSM-IV came out.

There's really no massive change to the new criteria, other than removing the Communication and Imagination parts from Autistic Disorder.



aghogday
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12 Dec 2012, 8:56 pm

Dillogic wrote:
As far as I'm aware, people have always been grandfathered (unless there was some massive change to the criteria), i.e., if you were diagnosed with Autism in the DSM-III, you still had it when the DSM-IV came out.

There's really no massive change to the new criteria, other than removing the Communication and Imagination parts from Autistic Disorder.


I think that holds true in the sense that when May 13 comes, close to 2 million estimated diagnosed in the US, with an Autism Spectrum Disorder, won't suddenly lose their diagnosis when the new definition and label is published. I think the issues are more relevant to when someone needs documentation for a current diagnosis for support services, insurance purposes, or from an employer for coverage under the ADA. I can only guess that in most cases it is likely that the old label of Autistic Disorder will still be accepted and there is at least one state that has passed a law where all existing autism spectrum disorders diagnoses will still be required as accepted under insurance plans. These are the type of logistic issues that Dr. King was referring to.

If everyone with an existing autism spectrum disorder was grandfathered in under the new definition and label on May 13, none of these logistical issues would be the pressing concern they are now, except when a change to the diagnostic label was required on documentation, as a simple administrative action by those that updating the documentation. If that is what Dr. Lord was referring to it would certainly make life substantially easier for most who are concerned, but I do find it hard to believe that Dr. King would not have been aware of that a little over a week ago, and Dr. Lord would.

The DSM working committee was asked about a re-diagnosis under the new label, and they stated those were issues that would need to be decided by communities, in the reference linked below. So at least to that point it did not appear that they were planning on any guidance on the issue of re-diagnosis. Again, the issue seems most important for insurance, support, and coverage under the ADA, or any other situation that requires documentation of an existing diagnosis, as to whether or not the older diagnoses will still be acceptable for those requiring documentation.

And of course, still a concern for some that are not yet diagnosed.

http://www.autismsupportnetwork.com/new ... sd-3478294



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12 Dec 2012, 9:11 pm

Rascal77s wrote:
Good find aghogday. So basically what she's saying is if you have a DX prior to dsm5 you're grandfathered into autism. So what about the people that don't have a pre-dsm5 dx? I have this strange feeling of being paid off to keep my mouth shut.


aghogday wrote:
Quote:
Going forward in his practice, King says he will use the new criteria, but he's not going to retrospectively rediagnose patients. So in his practice, nobody will lose their autism diagnosis.

"We have people waiting months for an autism diagnosis," King says. "There's no way and no place for clogging the diagnostic wait lists for people to get rediagnosed for administrative purposes."

He hopes the APA and other organizations will provide formal recommendations that provide instructions for clinicians to only re-evaluate a patient diagnosed with an autism spectrum disorder under the current definition, if there's a clinical reason to so.


This whole thing has been pretty scary to a lot of us. I hate to see anybody left behind, so, I refuse to let go of my concern for people diagnosed with PDD-NOS or who could've been diagnosed with it who now won't be, as well as anyone else who fears being left undiagnosed or losing a diagnosis. But the upcoming task seems clear to me now: We can only wait to see what actually happens and then respond to it in whatever way seems appropriate when the time comes. If certain studies prove to have revealed a valid outcome, many of us may end up embracing the change. However, if other studies turn out to confirm our fears, the battle is on. It's bad enough that bias based on age, sex, or race has been a factor in under-diagnosis, which has probably actually ruined many lives, not just made many far more difficult than necessary. We should never sit idly by if things are made worse for even the most culturally likely to be acknowledged. The fallout from that will make things all the more intolerable for everyone. So, let's see what happens and give it a good, thorough, honest evaluation and then make up our minds about what to do next.

Thanks for this thread, aghogday. This is the stuff my girlfriend had mentioned finding last night, though she forgot to send me the links to the sites where she'd found the info. Now I know what she was talking about.


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12 Dec 2012, 9:13 pm

Makes sense. This alleviates some of the confusion that would occur between people with ASD's and their insurance/healthcare providers. If insurance companies receive clear language like all patients with pre DSM-V diagnosis of an ASD are considered to be on the spectrum under DSM-V makes everything easier as far as that stuff goes. This prevents them from pulling s**t like asking you to be reassessed under new DSM to keep current coverage valid.



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12 Dec 2012, 10:27 pm

It's just a way to move along the Obamacare mandate... It's not surprising that all the sudden a more generic diagnosis that will exclude many future people from being diagnosed comes out... It's a very convenient way for insurance companies to avoid future costs within the new system. Can't refuse per existing conditions? Fine...well make them undiagnosable.



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12 Dec 2012, 10:42 pm

Dantac wrote:
It's just a way to move along the Obamacare mandate... It's not surprising that all the sudden a more generic diagnosis that will exclude many future people from being diagnosed comes out... It's a very convenient way for insurance companies to avoid future costs within the new system. Can't refuse per existing conditions? Fine...well make them undiagnosable.


Pure conspiracy theory.



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13 Dec 2012, 2:03 am

It doesn't appear that Dr. Catherine Lord, member of the DSM5 working group, that made the "essentially everyone gets in" quote, that comes across as a little "snarky" in context with her quote provided below, takes some of the concerns such as adult adaptation as very serious.

Her recent quote from a very popular article from the New York Magazine provided below may shed some additional light on how she views some of those concerns:

http://nymag.com/news/features/autism-s ... ndex6.html

Quote:
“I think I would say, if the term Asperger’s helps you describe yourself and gives you community, use it,” Catherine Lord, who is on the DSM-5 committee, tells me. “The fact that we’re changing the medical diagnosis … Most people who use Asperger’s would not have met the DSM-IV criteria, so they’re using the term already as a colloquial term. And that’s fine. I don’t think anyone wants to take that away, it just isn’t a medical diagnosis. If someone needs someone to cut them slack, whether they have Asperger’s or not, that’s something they need to negotiate with their spouse.”



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13 Dec 2012, 2:25 am

There was also this video that I saw posted elsewhere on WP a while back. It features Susan E. Swedo from the working group discussing the diagnostic changes and their reactions to public response etc. I found it quite interesting, though it's probably already a bit out of date.

http://youtu.be/PAQp2aNm2T4


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13 Dec 2012, 4:51 am

Quote:
“I think I would say, if the term Asperger’s helps you describe yourself and gives you community, use it,” Catherine Lord, who is on the DSM-5 committee, tells me. “The fact that we’re changing the medical diagnosis … Most people who use Asperger’s would not have met the DSM-IV criteria, so they’re using the term already as a colloquial term. And that’s fine. I don’t think anyone wants to take that away, it just isn’t a medical diagnosis. If someone needs someone to cut them slack, whether they have Asperger’s or not, that’s something they need to negotiate with their spouse.”


Ha. Amusing, to say the least (I've read it before, but each time I see it I laugh).

She obviously thinks most of the vocal and self-diagnosed "aspies" don't have it.



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13 Dec 2012, 5:44 am

This could mean that, or she could be referring to the research the DSM-5 changes were based on, in which it was found that the majority of people diagnosed with AS should have been diagnosed with autism.



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13 Dec 2012, 5:58 am

Dantac wrote:
It's just a way to move along the Obamacare mandate... It's not surprising that all the sudden a more generic diagnosis that will exclude many future people from being diagnosed comes out... It's a very convenient way for insurance companies to avoid future costs within the new system. Can't refuse per existing conditions? Fine...well make them undiagnosable.


This criteria change was in talks way before anyone heard anything about Obamacare.

There have been some Australians who have said it's just another 'cost-cutting' tactic by the Labor government.

Basically...getyourheadoutofyourass. This is not a government decision.

Are you so obsessed with your hatred of the current administration you'd blame them for everything? And I know Liberal voters that are like this about our current government.


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