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The DSM 5 and autism

Posted Jan 23 2012 8:32pm

A recent article in the New York Times has sparked a renewed heated discussion on the topic of Autism and how the DSM 5 may change how it is diagnosed. The Times article, New Definition of Autism Will Exclude Many, Study Suggests , has already been discussed here at Left Brain/Right Brain.

At that time there was a paragraph from the Times which was troubling:

The changes would narrow the diagnosis so much that it could effectively end the autism surge, said Dr. Fred R. Volkmar, director of the Child Study Center at the Yale School of Medicine and an author of the new analysis of the proposal. “We would nip it in the bud.”

Unfortunately we don’t have the full quote from Prof. Volkmar. The whole thing seemed a little strange. As noted on the Embargo Watch blog , this was based on a talk given at a small conference and a single slide in that talk.
In my opinion, it looks like the Times ran with a story that they shouldn’t have, and may have made it appear more troubling than it really is.

Troubling in this respect: the point of the DSM in my opinion is not to try to manage one way or another the number of identified autistics. It should be to accurately identify autistics.

A later article in the Times had this paragraph, which is again bothersome:

“We have to make sure not everybody who is a little odd gets a diagnosis of autism or Asperger disorder,” said Dr. David J. Kupfer, a professor of psychiatry at the University of Pittsburgh and chairman of the task force making the revisions, which are still subject to change. “It involves a use of treatment resources. It becomes a cost issue.”

I don’t see it as the place of the DSM 5 committee to either manage the “surge” in autism diagnoses or to manage a “cost issue”. And while the Times may be overplaying this, we need to focus on the fact that accuracy is far more important than social engineering here. Frankly I don’t think that everyone who is a “a little odd gets a diagnosis of autism or Asperger disorder” now. If there is a problem with over diagnosis, I’d like to see it backed up with data. Especially in the adult population, which is likely very much under diagnosed.

There are two valuable outcomes to accurately diagnosing autism. First and foremost is in providing services. In this respect it is better to cast the net a little wide rather than miss people who are in need. I don’t think we are there yet. As of now there may be an under count of autistic students based on socioeconomic status :

If the SES gradient found in this study is due only to ascertainment bias, this would imply that there are significant SES disparities in access to diagnostic and other services for children with autism in communities across the United States. It also would imply that the current estimate of ASD prevalence might be substantially undercounted, with children of low and medium SES being under-identified and underserved relative to those with high SES.

Girls may be identified later than boys :

Girls, especially those without cognitive impairment, may be formally identified at a later age than boys. This may delay referral for early intervention. Community education efforts should alert clinicians and parents to the potential of ASDs in boys and girls.

Autism is underdiagnosed in racial/ethnic minorities .

Significant racial/ethnic disparities exist in the recognition of ASD. For some children in some racial/ethnic groups, the presence of intellectual disability may affect professionals’ further assessment of developmental delay. Our findings suggest the need for continued professional education related to the heterogeneity of the presentation of ASD.

And this ignores the huge elephant in the room: the fact that autism is under diagnosed in adults. When an autism prevalence study was conducted in the UK , adults identified in the diagnostic assessment part of the study were previously undiagnosed. Studies in the U.S. have identified undiagnosed autistics within institutions—a place where the individuals are under close medical supervision. Is it really a stretch to believe that the low prevalence in adults involves a lot of under counting?

There is the medical diagnosis of autism and there are legal definitions of autism. Consider California. The California Department of Developmental Services has as part of its charter providing services to autistics within the state. All well and good, but California used the same rules from about 1985 to about 2007. They waited over 10 years after the DSM-IV was implemented to revise their rules. One result of this was that individuals with autism spectrum disorder diagnoses such as PDD-NOS and Asperger syndrome were considered to be not autistic. They didn’t have “autism” as their diagnosis.

In California schools, autism is not defined by the DSM or any other medical diagnosis. It is defined legally :

(a) For purposes of this chapter, a “pupil with autism” is
a pupil who exhibits autistic-like behaviors, including, but not
limited to, any of the following behaviors, or any combination
thereof (1) An inability to use oral language for appropriate
(2) A history of extreme withdrawal or of relating to people
inappropriately, and continued impairment in social interaction from
infancy through early childhood.
(3) An obsession to maintain sameness.
(4) Extreme preoccupation with objects, inappropriate use of
objects, or both.
(5) Extreme resistance to controls.
(6) A display of peculiar motoric mannerisms and motility
(7) Self-stimulating, ritualistic behavior.
(b) The definition of “pupil with autism” in subdivision (a) shall
not apply for purposes of the determination of eligibility for
services pursuant to the Lanterman Developmental Disabilities
Services Act (Division 4.5 (commencing with Section 4500) of the
Welfare and Institutions Code).

An individual without an autism (or ASD) diagnosis can be considered a “pupil with autism” (although this can be a battle). Likewise, an individual with an autism (or ASD) diagnosis can be not considered a “pupil with autism). Changing the DSM criteria will not make a difference in the educational definition. (edit to add—should have stressed “at first”. The educational definition will likely be reviewed and possibly changed after the DSM 5 is published)

An autism diagnosis is not a key to services, which is what the quotes from Professors Volkmar and Kupfer suggest (again, I think the Times has overplayed this). An autism diagnosis can often be, however, an important first step. Again in a world where legal definitions define developmental disability, having the right diagnosis can be the difference between starting the fight and being knocked out in the first round. In California the CDDS serves individuals with :

mental retardation, cerebral palsy, epilepsy, and autism. This term shall also include disabling conditions found to be closely related to mental retardation or to require treatment similar to that required for individuals with mental retardation, but shall not include other handicapping conditions that are solely physical in nature.

That last category is supposed to leave the door open to other developmental disabilities, but in practice it is a difficult argument to make. Even autism is not a key. I recall one autistic who advocated for others in the community telling me of someone who rode a bike to the DDS office for the interview. He was told he was denied because he could ride a bike. Sure its an anecdote. But at this point we don’t have a lot of data on adult autistics. And that should be a warning sign that we are under serving a big segment of the population.

And we are not talking about those “mildly affected”. I can speak from experience that the CDDS has tried to keep out one individual, my kid, someone who clearly meets multiple criteria.

With all due respect, I see that the DSM 5 committee holds a public trust. We need diagnostic criteria that are accurate, not designed by committee to solve problems like “cost” and a “surge” in autism.

With all this said, this latest surge in the discussion was sparked by a talk given at a conference. It is preliminary and there is a lager study in the works. There’s a reason why work like this is supposed to stay out of the public eye until complete. It appears that the author himself, Prof. Volkmar, broke the embargo on his own work, sort of. This is discussed at Embargo Watch as Study about potential effects of new autism definition spotlights the Ingelfinger Rule . Prof. Volkmar gave a single slide at a small conference and had the permission of his editor to do so. The Times picked this up and has now sparked a great fear of the DSM 5 within a large segment of the online autism communities.

  1. Roger Kulp:
    Very interesting that it lists autism and epilepsy.Both can be features of all sorts of syndromes,with lots of comorbitities.But epilepsy,in and of itself does not "require treatment similar to that required for individuals with mental retardation".Not sure where they get that. I like this definition better than the one in the DSM.Really narrows it down.
  2. Doug:
    "Changing the DSM criteria will not make a difference in the educational definition." The definition of autism in the IDEA is 95% the same as the DSM IV definition of autism. If the DSM V changes the definition of autism, there will be another fight at the federal level to change the definition of autism in the IDEA. Although states can not use the federal definition in IDEA, many do use it.
  3. daedalus2u:
    The DSM is a medical reference. Diagnosis in a medical context is always differential medical diagnosis. Differential medical diagnosis is only useful for differential medical treatment. If there is no differential medical treatment, then there is no need (or utility) for a differential medical diagnosis. It is unfortunate that differential non-medical treatment sometimes requires a differential medical diagnosis. People should be able to get what they need according to their actual need, not according to a diagnosis. The diagnosis is only supposed to support the evaluation of the actual need, not be used as a barrier to entry or a reason for denying needed services.
  4. RAJ:
    When DSM-III (1980) was published it quickly became clear that DSM-III was overdiagnosing autism. The APA rushed DSM-III-R (1987) into production that was supposed to correct the overdiagnosis of autism. Fred Volkmar conducted the field trials for DSM-III-R. By 1992 Volkmar found that DSM-III-R failed to correct the overdiagnosing autism. Volmar was then appointed chairman of the autism working group and conducted the field trials for DSM-IV (1994). DFSM-IV failed to stop the overdiagnosing of autism and produced just the opposite result of what was intended. Here's the current proposed criteia for autism spectrum disorders in DSM5: Given the history of previous editions of the DSM its impossible to predict if the DSM5 will 'stop the autism epidemic' in its track or continue the growth of the epidemic.
  5. Sullivan:
    RAJ, you do exactly what one of your common sources (Frances) does. You claim overdiagnosing without providng support. The DSM committee should not be in the business of social engineering. It is not their place to "stop the autism epidemic in its track". They need to give us an accurate method of identifying autism. If autism is broader than people in 1980 thought, so be it. We should not be searching for some sort of orthodoxy. Autism as Kanner described and what people call "classic" autism are not the same thing, for example.

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