[Autism Speaks] Concerns/Recommendations to the DSM5 Org.

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15 Jun 2012, 5:19 pm

Today is the last day for comments if anyone wants to register and provide comments to the DSMV organization. Some of the concerns Autism Speaks address, linked and quoted below, are similar to the concerns addressed per ASAN, linked in KenG's post. Some of recommendations to resolve the concerns are different.

Here is the link below to register to make comments. Input can't hurt if anyone has additional concerns or recommendations to provide to the DSM-5 Neurodevelopmental Disorders Work Group.

http://www.dsm5.org/pages/registration.aspx

After one registers, per the link above, one receives a password by email and is re-directed to the site to change the password. Then one can make a comment on the page where Autism Spectrum Disorder is located, by clicking the Neurodevelopmental Disorder link for the page listing all of the Neurodevelopmental disorders, and then clicking the link provided for Autism Spectrum Disorder webpage.

http://www.autismspeaks.org/blog/2012/06/11/dsm-5-update-our-letter-revision-committee

Quote:

Dear members of the DSM-5 Neurodevelopmental Disorders Work Group,

Autism Speaks is the world’s leading autism science and advocacy organization, representing hundreds of thousands of individuals and families affected by autism. We recognize the need for diagnostic criteria for autism spectrum disorders (ASD) that reflect our current scientific understanding and progress and define the wide range of symptom expression associated with this disorder. In the end, however, these are criteria about people who have symptoms that can be helped considerably by services aimed at improving their ability to function in the world. Thus, any revision of the diagnostic criteria must be made with great care.

There is great concern by many members of the autism community, including parents and individuals with ASD, that some individuals with ASD might “lose” their diagnosis based on the revised criteria. Another concern is the impact of changes in diagnostic criteria on prevalence estimates and the ability to have accurate estimates of changes in prevalence over time. A number of published studies have reported that a percentage (ranging from 13-39%) of individuals, mostly with higher IQs and less severe symptoms, would no longer meet the criteria for ASD under the new DSM-5 guidelines. For the most part, these studies have used a retrospective design, with reexamination and review of charts from different sources. Field trials, which involve face to face evaluation, have not demonstrated such a disparity. Although the field trials are encouraging, the sample size used for the field trials is relatively small (N = 83 children with ASD) and only involved pediatric populations. Additional prospective research based on larger samples, diverse ethnic backgrounds, and a wider age range is clearly needed to provide more definitive answers. In this letter, we raise several issues which we respectfully ask the committee to consider:

1. Need for additional prospective data comparing DSM-IV and DSM-5 criteria. Additional prospective data based on larger samples, diverse ethnic backgrounds, and wider age ranges are clearly needed to provide more definitive answers. We have very little information about the impact of the new DSM-5 criteria on diagnosis of very young children, adults, and individuals with different ethnic backgrounds. The current criteria should be considered provisional and open for future revision until more definitive research is conducted.

2. Need for clear guidance re: retention of previous ASD diagnosis of symptoms. We request that the committee make it clear that it is the opinion of the American Psychiatric Association (APA) and the Neurodevelopmental Disorders Work Group that all individuals who currently have a diagnosis of ASD (including all subgroups of DSM-IV pervasive developmental disorders) should retain their diagnosis for purposes of qualifying for needed clinical and educational services.

3. Need for clear guidance re: continued use of the diagnosis of Asperger syndrome. The committee has noted in previous communications that people with a current diagnosis of Asperger syndrome will be able to have that diagnosis indicated in their medical/educational record as part of the list of “specifiers.” This will allow persons to retain their identity as persons with Asperger syndrome and facilitate continued research on such individuals. We request that the APA and the Neurodevelopmental Disorders Work Group make it clear that this option is possible for people with Asperger syndrome.

4. Need for more information for clinicians on use of specifiers. The clinical specifiers have enormous potential to be used to describe specific subtypes of ASD, including those with limited language function and intellectual disability, known etiologies, history of regression, and medical co-morbidities, such as seizures and GI disorders. We urge the committee to provide more specific instructions for clinicians on how specifiers should be defined and recorded. Without additional guidance, clinicians may not use these important specifiers that have clinical implications for persons with ASD.

5. Concern that the criteria are overly strict and may exclude those with an existing diagnosis. Multiple studies have reported the excellent construct validity of using a two “factor” model for autism symptoms, rather than the DSM-IV three “factor” model. However, we remain concerned that the requirement of three symptoms in the social communication category and two symptoms in the restricted repetitive behavior category may be overly strict and result in exclusion of persons with ASD. Studies in which specificity and sensitivity were evaluated indicate that relaxing the number of observed symptoms in either category has minimal effects on specificity while increasing sensitivity. For very young children, in particular, the requirement for two symptoms in the restricted repetitive behavior domain may be problematic. We request that the committee consider relaxing the criteria. We recommend that these criteria be considered provisional until more data has been collected to examine their impact on diagnosis.

6. Need for monitoring of the impact of the DSM-5 criteria in real world settings. As described above, there is a clear need for more information about the way that the DSM-5 will affect people’s lives in real world settings. We request that the committee recommend ways in which information regarding the impact of the DSM-5 on diagnosis and access to services can be broadly tracked. The ultimate reason for diagnostic criteria is to improve the lives of people with ASD. It is crucial that the impact of the proposed changes be closely monitored and assessed.

On behalf of people affected by autism and their families, we urge you to consider these issues in your deliberations as you finalize the revised criteria for diagnosis of autism spectrum disorder.

vermontsavant
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15 Jun 2012, 5:24 pm

Oh Absoluteley, Im sure the DSM5 crew is just dying to hear my thoughts.

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aghogday
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15 Jun 2012, 5:41 pm

vermontsavant wrote:

Oh Absoluteley, Im sure the DSM5 crew is just dying to hear my thoughts.

Well, if they aren't interested, I am,

if you don't mind sharing your personal recommendations for changes to the current revision of the DSM5 Criteria/Severity levels for Autism Spectrum Disorder.

OddDuckNash99
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15 Jun 2012, 9:44 pm

As much as I cannot stand Autism Speaks, I'm all for anyone speaking out against the DSM-5. Even them. I happily submitted my DSM-5 criticism comments this Wednesday. And trust me, the proposed removal of AS is only the tip of the iceberg in my long list of complaints. I am most upset about the illogical, backwards mood disorder criteria proposed and the term "neurodevelopmental disorders" being used for the "disorders starting in childhood" ONLY, which I find highly offensive. Since we have to submit comments on the specific disorder pages, I must have submitted about 6 or 7 different comments in order to submit my full 3-page rant.

While I may be pretty vocal on this forum about my feelings on the AS diagnosis removal, I just wanted to clarify in this post how, although I really disagree with the AS removal, I think this proposal is just unwarranted. But at least I can see why some favor the change, and at least the new criteria specifically mentions sensory issues. But the other changes I chose to rant about? They are virtually destroying diagnosis classification as we know it and totally over-relying on the "spectrum" concept without looking at different subtypes. Sure, bipolar disorder is a spectrum, but it's a spectrum that can only be shown by differing types and combinations of mood episodes, from unipolar depression at one end to bipolar-I at the other, and schizoaffective disorder connecting psychotic mood disorders and schizophrenia. Does the DSM-5 show this? Oh, that's right- "mood disorders" doesn't even exist as a category anymore, "bipolar disorders" and "depressive disorders" are completely separate categories, and schizoaffective disorder is now put with "schizophrenia spectrum disorders." How is this showing current research findings?

And speaking of current research findings, they claim that their changes are based on "recent research," but they simply ignore that there are recent studies with conclusions that go AGAINST the proposals, in addition to the fact that the research they choose to cite in their "rationales" is far from the best selection. Case in point, Goodwin & Jamison (2007), in their quintessential bipolar textbook, repeatedly mention problems with the DSM-IV mood disorder criteria and how the DSM-5 should revise these issues. Go to the "rationales" on their website- the only place Goodwin & Jamison's textbook is cited is for the basic definition of what bipolar disorder is. None of these authorities' views on DSM-5 changes are taken into consideration. And Dr. Fred Volkmar, one of the world's leading ASD researchers, actually left the ASD work group because of how much he disagreed with the new ASD proposed criteria.

While I'm happy that anyone with opinions and knowledge on the subject can express their views, it just angers me how leading researchers are expressing opposition of the new criteria and they probably won't revise a thing...

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15 Jun 2012, 11:39 pm

aghogday wrote:

vermontsavant wrote:

Oh Absoluteley, Im sure the DSM5 crew is just dying to hear my thoughts.

Well, if they aren't interested, I am,

if you don't mind sharing your personal recommendations for changes to the current revision of the DSM5 Criteria/Severity levels for Autism Spectrum Disorder.

i have no major problem with the currant purposal and getting rid of outdated terms like aspegers syndrome,kanners syndrome,pdd-nos or cdd.maybe a 4 level system would be better though.

LEVEL 1.non verbal learning disabilities,samantic pragmatic disorder,PDD-NOS and some mild aspergers
LEVEL 2.more severe aspergers and highest functioning kanners autism
LEVEL 3.classic kanners autism
LEVEL 4.more severe autism and childhood disintagative disorder

like i said i doubt any of the DSM5 doc's care what we think

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aghogday
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15 Jun 2012, 11:42 pm

OddDuckNash99 wrote:

The field trials that have been done so far by the DSM5 organization do not appear to show that many with Aspergers will lose their diagnosis, an alternate diagnosis of SCD will likely be provided for some with PDD NOS without RRB's, and one study that shows a few will likely gain a diagnosis; however, per Volkmar's concern in the link below researchers in field trials often use existing tools such as the ADOS as an additional clinical tool for assessment. This isn't required in the real world, per DSM-5 guidelines.

DSM5 Field Trials Link

Those concerns have been addressed; the suggestion by Autism Speaks and others, is that further revision may be needed, pending the results of additional research. I suppose the worst case scenario would be that if real world results per the actual use of the DSM-5 guidelines prove ineffective, that a DSM-5.1 revision would be a possible scenario, for a more effective diagnostic tool.

Autism Speaks is currently funding a study, linked below, that addresses a much larger population outside the scope of the field trials that have been conducted so far by the DSM-5 organization. Those results should be interesting.

I suspect that Autism Speaks recommendation, quoted above, to the DSM-5, per relaxing the criteria that exists now, may in part be associated with preliminary results from the study that they are currently funding, but that is speculation on my part, based on information on their website that acknowledges what appear to be encouraging results from the DSM5 field trials.

Link for New research on the Impact of the DSM5 Revision

My understanding is that a significant number of other DSM5 revised diagnostic guidelines did not meet historic reliability standards in the field trials that were conducted, so I think it is likely that we will at least see revisions among those disorders, that have failed historic field test diagnostic standards, including Bi-Polar 2, that had a reliability rating of .4, considered unacceptable by any previous standard for reliability, per link below:

DSM5 Diagnostic Field Trial Reliability Scores Link

OddDuckNash99
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16 Jun 2012, 10:38 am

aghogday wrote:

My understanding is that a significant number of other DSM5 revised diagnostic guidelines did not meet historic reliability standards in the field trials that were conducted, so I think it is likely that we will at least see revisions among those disorders, that have failed historic field test diagnostic standards, including Bi-Polar 2, that had a reliability rating of .4, considered unacceptable by any previous standard for reliability, per link below:

DSM5 Diagnostic Field Trial Reliability Scores Link

Thanks for this link. I greatly enjoyed seeing official POOR reliability scores for the DSM-5. I liked how nearly all the disorders in that chart had abysmal scores compared to the DSM-IV and ICD-10. :lol:

I wish they would have had classic OCD in that chart, though. They only had OCPD. But I am glad this evidence is showing how my opinions from the beginning are pretty much right- the DSM-5 is making things too broad and vague.

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16 Jun 2012, 10:19 pm

That appears to be a quadruple post.

/pedant

OddDuckNash99
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18 Jun 2012, 6:45 am

Verdandi wrote:

That appears to be a quadruple post.

/pedant

Yes, but I thought putting "triple" and "quadruple" WOULD look pedantic. :lol:

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18 Jun 2012, 10:38 am

OddDuckNash99 wrote:

Verdandi wrote:

That appears to be a quadruple post.

/pedant

Yes, but I thought putting "triple" and "quadruple" WOULD look pedantic. :lol:

Did you know you could delete them? If the last post in a thread is yours, there should be a little box with an X on it in the upper right corner of that post. Click it and you'll get a dialogue asking if you really want to delete the post. Once it's gone you can delete the next, and the next, until you run out of consecutive posts by you.

Also, this is Wrong Planet. There are hundreds of thousands of pedantic posts here.

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19 Jun 2012, 1:41 am

Maybe clinicians will stop using DSM ans start using ICD10 Instead. After all, Insurance companies only pay on ICD not on DSM...

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aghogday
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19 Jun 2012, 2:55 am

soutthpaw wrote:

Maybe clinicians will stop using DSM ans start using ICD10 Instead. After all, Insurance companies only pay on ICD not on DSM...

Clinicians and insurance companies currently use codes that translate the differences in diagnostic classifications per the two systems of classification.

The codes will be adjusted for the DSM-5 as they were for the DSMIV-TR to accommodate differences between the two diagnostic classifications. My understanding is at some point in the future the two standards of classification will mirror each other, but I don't think it is likely to happen anytime soon, at least not with the present revisions, per the DSM5.

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19 Jun 2012, 6:43 am

Verdandi wrote:

Did you know you could delete them? If the last post in a thread is yours, there should be a little box with an X on it in the upper right corner of that post. Also, this is Wrong Planet. There are hundreds of thousands of pedantic posts here.

Yeah, I knew about the "X" for deleting, but for whatever reason, I am not seeing that option for these superfluous posts! Who knows?! :lol:

And yes, lots of pedantry here. :lol:

I just sometimes don't know how people view me on here- if they'd think my pedantry and exactness is just normal AS or if they'd think I'm just snobbish.

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mike_br
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19 Jun 2012, 11:18 am

soutthpaw wrote:

Maybe clinicians will stop using DSM ans start using ICD10 Instead. After all, Insurance companies only pay on ICD not on DSM...

I'm diagnosed under 84.5 on ICD-10.

I'm following the DSM debate though. Although I'd be glad if the Asperger's name cease existing (it's horrible), I expect the new standard won't make life difficult for everyone.

Last edited by mike_br on 19 Jun 2012, 3:02 pm, edited 1 time in total.

aspie48
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19 Jun 2012, 3:00 pm

I hate autism speaks and i'm not even going to look at their recommendation. I'm sure it is all backwards somehow.

merig
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03 Jul 2012, 6:48 am

Its all pointless.

The low functioning DSM people and the low functioning people at Aut speaks both want to change our labels from words to numbers.

I refuse to be a number.

Actually like many of us it would be several numbers depending on the environment and circumstances.

Autism can not be graded.

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