The DSM 5 and autism

24 Jan

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
communication.
(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
patterns.
(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.

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19 Responses to “The DSM 5 and autism”

  1. Roger Kulp January 24, 2012 at 02:44 #

    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 January 24, 2012 at 15:20 #

    “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.

    • Sullivan January 24, 2012 at 18:57 #

      Doug

      good point. I’ve edited the above to note that.

  3. daedalus2u January 24, 2012 at 15:35 #

    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 January 24, 2012 at 16:21 #

    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).

    http://www.ncbi.nlm.nih.gov/pubmed/1483972

    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:

    http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=94

    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.

    • Sullivan January 24, 2012 at 18:45 #

      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.

  5. Nancy January 24, 2012 at 19:21 #

    I live in Michigan and have a teenage son who is autistic. When I first heard about the proposed change in definition of autism, I was worried for my son. He benefits greatly from the services he receives at school and I did not want those services stopped for him, or his high-functioning peers. Thank you for explaining and clarifying things.

  6. Visitor January 24, 2012 at 19:25 #

    Thanks for those links RAJ. I’m thinking DSMV is meant to put a lid on it before everyone is diagnosed as autistic. I’m not even sure that Jake Crosby’s repetitive turning up at meetings and saying the same things will entitle him to qualify under the proposed new classification.

    I’m also unsure whether folk who use an Asperger’s diagnosis as a badge of pride will find it easy to think of themselves on a two-dimensional spectrum with some of the severely challenged people who are described as having autism.

    The debate, though, is great because it shows how autism is a pick n mix construct and not a thing-in-itself at all.

    • Sullivan January 24, 2012 at 23:49 #

      Visitor,

      I won’t speculate on which individuals or which individuals’ kids will lose diagnoses. I will say that my kid is autistic. DSM III, DSM IV and DSM V.

  7. Visitor January 24, 2012 at 19:29 #

    The California educational criteria Sullivan posts are surely a joke. Reading those, a lot becomes clear.

  8. RAJ January 25, 2012 at 08:05 #

    Suliva;
    Do you have a reading problem? It was Fred VOlkmar himnself who led the field trials for DSM-IV who stated:

    ‘Relative to either clinicians, DSM-III, or ICD-10 the DSM-III-R system overdiagnosed the presence of autism. Implications for research and for future revision of diagnostic criteria are discussed.

    You have the editor of DSM-IV (1994) and the editor of the Journal of Autism and Developmental DIsorders (Volkmar)who led the field trials for both DSM-III-R and DSM-IV who both claim that the overdiagnosis of autism has beem caused by subsequent publications of DSM versions.
    On the other hand we have Sullivan who claims to b be more knowledgeable about how to diagnose autism than the editor of DSAM-IV or the current editor of the Journal of Autrism and Developmental Disorders who led the field trials for both DSM-III-R and DSM-IV

    • Sullivan January 25, 2012 at 19:32 #

      RAJ,

      I don’t have a reading problem. Why do you ask? I understand your position. I disagree with it. Is that hard? I don’t think that quoting experts is the ultimate trump card. Neither do you, so I don’t see why you keep harping on quotes from Prof. Volkmar like that.

      On the other hand we have Sullivan who claims to b be more knowledgeable about how to diagnose autism than the editor of DSAM-IV or the current editor of the Journal of Autrism and Developmental Disorders who led the field trials for both DSM-III-R and DSM-IV

      I take it that since you are now misrepresenting what I am saying that you are through with a reasoned discussion. That wasn’t a question.

      RAJ, are you never going to disagree with someone who is an expert in the field again? Am I allowed to delete all your comments which don’t meet your own new standard? Please rejoin the conversation on a reasonable level. Or leave.

      Note that you assume “the overdiagnosis”. Not that Prof. Volkmar is claiming there is an overdiagnosis. The former is inaccurate, the latter is accurate. Do you see that? I’d hate to accuse you of a reading problem.

      If you decide to come back, would you address how this over diagnosis affects the California Twin Study. They used the ADI and the ADOS, which are DSM-IV based. Are we supposed to care about the concordance, or lack thereof, for twins who are “overdiagnosed”? Hallmeyer et al. found that “The DDS-based diagnosis was therefore a good predictor of the study ASD diagnosis based on the ADI-R and ADOS.”

      So, on the one hand you welcome data based on the DSM-IV criteria (the Twin Study).

      On the other hand, the same diagnostic criteria are fatally flawed and a vast number of those diagnosed with it are not really autistic.

      I’m sure you have some logical explanation and will provide numerous quotes and links. I just hope this time you stay on point and your “logic” actually works.

    • Sullivan February 3, 2012 at 18:16 #

      RAJ,

      When trying to discuss people’s intentions rather than actions, one must accept a greater number of mistakes.

      Per the Yale Daily News:

      “I think [the proposed revision] is a mistake,” Volkmar said. “It changes people’s eligibility for key services, and a lot of people expressed concern.”

      This doesn’t mesh well with the story you have been weaving. Makes it rather ironic your rebuttal that I shouldn’t question “the editor of DSAM-IV (sic) or the current editor of the Journal of Autrism and Developmental Disorders who led the field trials for both DSM-III-R and DSM-IV”

      Do you feel that perhaps one can disagree with Prof. Volkmar now?

  9. Anne January 25, 2012 at 11:25 #

    Regarding the California Dept. of Developmental Services, one of their attorneys told me there were certain recent legal cases that *specificallly* excluded Asperger’s and PDD-NOS from receiving Regional Center services. Additionally, if the diagnosis had not been made by the age of 18, any autistic-type symptoms were assumed to be acquired injuries and not truly on the spectrum. For current 19-year-olds, that might not seem so out of place, but applied to people who turned 18 before the 1990s, that doesn’t make much sense.

  10. Moderation January 25, 2012 at 21:16 #

    We can all agree that children with developmental and behavioral issues (I am intentionally using the broadest and most non-specific terms I can think of) should be provided with the support to give them the highest quality of life attainable. However, wanting to continue to use an over-broad diagnosis, that may encompass multiple diverse causes, becuse of the services it makes avialable does not fix the underlying problems of inadequate services in the educational and healthcare systems or advance research into the causes of autism. The implication,of an earlier commenter, that there is no need to differentiate the types/causes of diagnosis if there no difference in treatment is medically naive. Differentiation is the first step to investigation.

    There are many causes of fever and cough, but just because everyone gets better with a broad spectrum antibiotic (viral or bacterial) does not mean we don’t differentiate the cause so that we can appropriately treat each one. Additionally, differentiating the causes allows for specific research into each one. (simplistic analogy, I know … but only one I could come up with quickly)

    • Sullivan January 25, 2012 at 21:57 #

      “wanting to continue to use an over-broad diagnosis’

      Again, I’d like to see the term “over-broad diagnosis” supported. That’s the argument, in my view.

  11. Moderation January 26, 2012 at 01:02 #

    Over broad was meant to express an opinion. I am not sure how in discussing such a nebulous diagnosis as autism, you can use anything but your opinion – some being more expert than others. It is not like there is an autism blood test for which a threshold can be set. My point was that, unless you believe that the mildest Aspbergers to the most severe form of autism are caused by the same physiologic mechanism or are different genotypes that result in a phenotypically identical syndrome, then you have to believe that the diagnosis of autism needs some refining and differentiating. Hopefully, this is what the DSMV will do.

  12. Anne January 26, 2012 at 08:48 #

    I know this may just be a coincidence, but it seems odd that right after parents have lobbied various states (such as California) to require insurers to cover autism treatments*, the APA suddenly has an urge to rein in the so-called over-diagnosis of autism? Perhaps before these decisions, there had been less financial motivation to exclude milder cases of autism from treatment when insurers could refuse to pay for treatment on the basis of ABA/sensory/etc. being educational and not medical in nature.

    *I’m aware that the intervention most requested by parents, ABA, does not actually treat autism, it merely trains autistic children to behave in a manner more acceptable to non-autistics. However, it is being presented as a treatment for billing purposes.

    Before throwing most autistics off the bus to lower treatment costs, it might make more sense to do some cost-benefit analysis of various interventions. If methods less time-intensive (and therefore less costly) than ABA could help autistics cope with and communicate with the NT world effectively, the same level of funding would go further and perhaps even have better outcomes for the autistics. The goal of ABA is to train autistics to be “indistinguishable from their peers” behaviorally, not to lessen the stress and sensory overload that leads to autistic behavior.

    However, ABA has been presented so effectively as the only modality that will rescue autistic children from a life of subhuman misery that it would be difficult to study alternatives.

    http://autismcrisis.blogspot.com/2007/08/autism-and-aba-in-uk-controlled-trial.html

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