Report of the DSM-V Neurodevelopmental Disorders Work Group

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sinsboldly
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18 Apr 2009, 11:56 am

Susan Swedo, M.D. wrote:
November 2008


The Neurodevelopmental Disorders (ND) work group’s discussions have focused on three areas:

1) Possible modification of ADHD criteria to allow for co-morbidity of autism and ADHD (currently excluded). The ADHD & Disruptive Behavior Disorders Work Group has agreed to consider this possibility.

2) Discussion of the validity of Rett’s disorder as a separate disorder and inclusion of a new modifier within the Autism Spectrum Disorders (ASD), which might include genetic and medical disorders and other biologically-definable conditions.

3) How to address Pervasive Developmental Disorders – Not Otherwise Specified (PDD-NOS). The individuals currently diagnosed with PDD-NOS may still be described in DSM-V, but the work group will discuss whether they can redefine ASD in such a way that the PDD-NOS diagnosis isn’t necessary, as this diagnosis currently captures a very heterogeneous group of individuals.

The ND Work Group will be seeking additional feedback from advisors and other experts prior to “finalizing” any recommendations.

Questions still under active discussion for ASD include:

1) How to describe the “spectrum” of disorders now known as ASD (e.g., how many domains will define the disorder);

2) What is the specificity of repetitive behaviors in ASD and how might they be better defined;

3) Whether Childhood Disintegrative Disorder (CDD) is a unique and separate disorder, and if so, what are its defining characteristics;

4) Whether autism is a life-long diagnosis or whether it is possible to recover/remit to the point where the diagnosis is no longer applicable;

5) Whether Asperger’s disorder is the same as “high-functioning autism”;

6) How the DSM-V can alert clinicians to common medical comorbidities (including genetic disorders, epilepsy/EEG abnormalities and sleep, or GI problems) and potential biomarkers;

7) How to include consideration of severity and impairment in diagnosis (currently defined as “qualitative impairments”) and how to integrate these with the overall structure of DSM-V; and

8 ) How/where to discuss cultural influences on diagnosis (e.g., Korean use of reactive attachment disorder rather than ASD to avoid family stigmatization).

The following issues are being evaluated by subcommittees of the ND work group: core criteria and domains; CDD and regression; genetics and biomarkers; Asperger’s disorder; and the Gender, Lifespan and Cultural Study Groups. Secondary data analyses are underway to address each of these areas.

The Neurodevelopmental Work Group is also charged with examining definitions of intellectual disabilities and learning disabilities. Two subcommittees are addressing these issues – Intellectual Disabilities (ID) and Learning Disabilities (LD). Advisors have been chosen for these subcommittees and new definitions of the LDs and IDs are being examined by a multi-disciplinary, internationally representative committee.



American Psychiatric Foundation: Report of the DSM-V Neurodevelopmental Disorders Work Group



OutlawSteph
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30 Apr 2009, 11:43 am

Tony Atwood has pointed some interesting problems with the DSM criteria of AS. They should look at his research.



Master_Pedant
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03 May 2009, 12:35 am

The last manual replaced the previous paradigm of classifying disorders based on inner mental processes (i.e. psychoanalytic and Freudian notions were rejected, most noticeably the removal of neurosis) and replaced with a paradigm based on measurable behaviour. This seems to be the shift from psychoanalysis to behaviourism.

Cognitive neuroscience has given us a lot more objective, relatively value neutral information on cognition in those with mental disorders (or, more neutrally, atypical neurology/minds). This new research trend really should bring psychology back “inward”, except in a much more clear-cut way than Freud did.

That is why I am surprised the new definitions don't include a lot more neurobiological or neurophysiological facts when defining the conditions. It would make matters a lot more precise.



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04 May 2009, 2:41 am

It's good that they're fixing up PDD-NOS; it's such a mess. You have people with NLD and also others with Atypical Autism under the same heading, for example, and both are entirely different in manifestation.

It's also good how they're looking at the cases where people seem to "outgrow" their autism no matter what treatment is done, and should these people still be said to have autism as they effectively don't have it anymore.

I think they'll keep AS in, personally.



millie
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06 Jun 2009, 1:24 pm

Quote:
Danielismyname wrote:
It's good that they're fixing up PDD-NOS; it's such a mess. You have people with NLD and also others with Atypical Autism under the same heading, for example, and both are entirely different in manifestation.

It's also good how they're looking at the cases where people seem to "outgrow" their autism no matter what treatment is done, and should these people still be said to have autism as they effectively don't have it anymore.

I think they'll keep AS in, personally.


the PDD-NOS category seems like a kind of "receptacle" for any presentation that does not fit the current breakdowns.
It is not helpful.

Why do you think they will keep AS in, daniel? I am interested to know.
My impression was it was almost certain to be discarded.



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09 Jun 2009, 1:09 am

What does it mean to outgrow autism? Neuroscans from before and after a certain stage in development or "Patient no longer presents symptoms in a severe enough manner to keep diagnosis" or my personal favorite "Patient turned 18, diagnosis of childhood disorder autism no longer warranted, no other condition diagnosible, patient remains disruptive and requires isolation from the rest of the ward."



seebert
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09 Jul 2009, 3:24 pm

Crassus wrote:
What does it mean to outgrow autism? Neuroscans from before and after a certain stage in development or "Patient no longer presents symptoms in a severe enough manner to keep diagnosis" or my personal favorite "Patient turned 18, diagnosis of childhood disorder autism no longer warranted, no other condition diagnosible, patient remains disruptive and requires isolation from the rest of the ward."


I have my suspicions that this comes from the "Cure" movement- and that anybody who gains enough coping skills and eliminates enough excessive stimulus from their life to become functional will be pronounced "cured".

If so, it will be a sad thing for those of us who are high functioning yet still need some accommodation, as it will make that accommodation harder to achieve.



Awiddershinlife
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14 Jul 2009, 12:18 pm

OutlawSteph wrote:
Tony Atwood has pointed some interesting problems with the DSM criteria of AS. They should look at his research.


I would like to see this info myself. Where could I access this?


1. I think the three criteria currently used by the dsm is a good start, but the

DSM IV wrote:
(II) Restricted repetitive & stereotyped patterns of behavior, interests and activities, as manifested by at least one of the following"


Needs to be expressed as our unifying strength. This is what drives the spectrum mind to excel and has resulted in many of humanities grandest contributions in math, science, and the arts.

perhaps
future DSM IV wrote:
Intensely focused attention to specific interests and activities...as manifested by:
scholarly or artistic accomplishments"



2. I think LFA/HFA NLD ASPERGERS ADHD all need to be under one heading: autism spectrum. We all have the three current core diagnostic criteria (once we remove the "before age 3" stipulation) and the fourth one that should be added (executive functioning delays) differing only by degree on multiple measures (listed below - we are a diverse bunch). Most of us would benefit from some support no matter how "HF" we appear. Our differences could be profiled to provide an accurate description of our strengths and needs:
Communication
social interaction (ToM)
Focused Interests
Executive functioning

Frequently associated with, but not core to autism are:
Sensory Processing Disorder
Cognitive processing
Asynchronicity
Gestault learning/data-based learning styles
Savant skills
Fine motor development
Gross motor development
Learning Differences (Disabilities Dyscalculia Dyslexia)
Short-term memory (long-term memory can be extraordinary)
Coexsisting conditions: Depression Bipolar Disorder Phobias Anxiety Disorder Obsessive Compulsive Disorder (OCD)

3. It is derogatory and misleading classify some of us as LFA, some of us who have incredible thoughts, ideas, etc to contribute to the world. This moniker does not help with credibility. The group called "LFA" have fewer rights than other disabled people. This group needs to be listened to MORE CAREFULLY not less carefully, this group needs MORE RIGHTS, not less rights.

4. I think Retts and Childhood Disintegrative Syndrome need to be moved to a separate heading. Autism, aspergers and ADHD are all progressive while Retts & CDS are degenerative

Whew, that was probably more than you wanted to hear... :oops:


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Awiddershinlife
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14 Jul 2009, 12:22 pm

seebert wrote:
Crassus wrote:
What does it mean to outgrow autism? Neuroscans from before and after a certain stage in development or "Patient no longer presents symptoms in a severe enough manner to keep diagnosis" or my personal favorite "Patient turned 18, diagnosis of childhood disorder autism no longer warranted, no other condition diagnosible, patient remains disruptive and requires isolation from the rest of the ward."


I have my suspicions that this comes from the "Cure" movement- and that anybody who gains enough coping skills and eliminates enough excessive stimulus from their life to become functional will be pronounced "cured".

If so, it will be a sad thing for those of us who are high functioning yet still need some accommodation, as it will make that accommodation harder to achieve.


A PhD in the cure movement defined it as no longer meeting the diagnostic friteria in the DSM IV: no measurable communication delay, no repetitive activities, etc. She admitted it did not necessarily mean typical and did not mean aspergers (a different diagnosis) was ruled out.


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seebert
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20 Jul 2009, 6:22 pm

Awiddershinlife wrote:
seebert wrote:
If so, it will be a sad thing for those of us who are high functioning yet still need some accommodation, as it will make that accommodation harder to achieve.


A PhD in the cure movement defined it as no longer meeting the diagnostic friteria in the DSM IV: no measurable communication delay, no repetitive activities, etc. She admitted it did not necessarily mean typical and did not mean aspergers (a different diagnosis) was ruled out.


What PhD's have a tendency to forget is that there's a huge gap between what they think their research means and how the general public will interpret it. Same problem exists in climate research, where only 16% of the public believe that scientists have a consensus on anthromorphic (human caused) global warming, but 84% of the actual climatologists agree that it is happening.

If the new DSM is not worded *very* carefully, you'll see Asperger's people being pronounced cured, and then fired for being outside normal behavior.



Awiddershinlife
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09 Aug 2009, 12:20 pm

Have any of you written up proposals for the DSM V Dx or ASD?

How do we access the DSM V contributors to influence how they wrtie about us?

Are there any release dates?

How do we coalesce to form a "voice" loud enough to be heard? We are all just fainly squeeky individual voices right now.

We all could sprinkle threads in all the forums we participate in to keep this idea alive and get people thinking.

aaarrhhh!! Getting aspies to move as a group is like herding cats!! !! But divided we fall.

Well - I am off to sprikle threads!!

Lest please keep this going!! !


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sg33
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09 Aug 2009, 12:32 pm

I feel strongly that the Asperger syndrome diagnosis should not be dissolved into a generalized "autism spectrum" diagnosis. There are aspects of my AS experience which are not well-described by discussion of autism.

I do feel that it is important for everyone on the spectrum to band together in solidarity for political purposes: to advocate for our rights and to increase public awareness and acceptance, but it makes no sense to eliminate useful diagnostic categories for political reasons.



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09 Aug 2009, 12:32 pm

[accidental repost deleted]



Last edited by sg33 on 09 Aug 2009, 1:04 pm, edited 2 times in total.

Awiddershinlife
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09 Aug 2009, 12:45 pm

sg33 wrote:
I feel strongly that the Asperger syndrome diagnosis should not be dissolved into a generalized "autism spectrum" diagnosis. There are aspects of my AS experience which are not well-described by discussion of autism.

I do feel that it is important for everyone on the spectrum to band together in solidarity for political purposes: to advocate for our rights and to increase public awareness and acceptance, but it makes no sense to eliminate useful diagnostic categories for political reasons.


Your input is vital and I thank you for sharing that you feel I am on the wrong track (familiar turf for me haha)...

Please share what you think would be the right track


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sg33
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09 Aug 2009, 1:14 pm

Awiddershinlife wrote:
Your input is vital and I thank you for sharing that you feel I am on the wrong track (familiar turf for me haha)...
Please share what you think would be the right track


I am grateful that you remain calm and communicative despite our disagreement. Considering that many people become defensive, it is refreshing to be able to discuss calmly.

I think that the right track would be to emphasize our solidarity when it come to political and social change, but to recognize that political solidarity is not a basis for medical classification. The medical community should maintain and refine any useful clinical distinctions according to medical evidence. We should not pressure the medical community as a political tactic. Accurate medical classification is necessary in order to tailor medical care, educational and vocational support, and other services to the individual.



Awiddershinlife
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09 Aug 2009, 1:46 pm

sg33 wrote:

I think that the right track would be to emphasize our solidarity when it come to political and social change, but to recognize that political solidarity is not a basis for medical classification. The medical community should maintain and refine any useful clinical distinctions according to medical evidence. We should not pressure the medical community as a political tactic. Accurate medical classification is necessary in order to tailor medical care, educational and vocational support, and other services to the individual.


Oh, you are absolutely correct about medical evidence over political whims

I would, however, like to influence the words used to describe the medical evidence.

An example might be
Instead of:
DSM IV wrote:

A. Restricted repetitive and stereotyped patterns of behavior, interests and activities, as manifested by at least one of the following:
1. encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity of focus
2. apparently inflexible adherence to specific, nonfunctional routines or rituals
3. stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)
4. persistent preoccupation with parts of objects


The new addition reads:
DSM V wrote:

A. Intensely focused patterns of behavior, interests and activities, as manifested by at least one of the following:
1. Scientific or artistic achievement for age
2. encompassing preoccupation with one or more intensely focused patterns of interest that is atypical either in intensity of focus
3. outwardly appearing inflexible adherence to specific, atypical routines or rituals
4. stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)
5. persistent preoccupation with parts of objects


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