Report of the DSM-V Neurodevelopmental Disorders Work Group

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Whether autism is a life-long diagnosis or whether it is possible to recover/remit to the point where the diagnosis is no longer applicable;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

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."

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

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

Intensely focused attention to specific interests and activities...as manifested by:
scholarly or artistic accomplishments"

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.

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

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.

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

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