New Definition of Autism May Exclude Many, Study Suggests

20 Jan

The New York Times reports New Definition of Autism May Exclude Many, Study Suggests. The study is not published yet and was presented at a conference in Iceland.

The Times reports:

The study results, presented on Thursday at a meeting of the Icelandic Medical Association, are still preliminary, but they offer the latest and most dramatic estimate of how tightening the criteria for autism could affect the rate of diagnosis. Rates of autism and related disorders like Asperger syndrome have taken off since the early 1980s, to prevalence rates as high as one in 100 children in some places. Many researchers suspect that these numbers are inflated because of vagueness in the current criteria.

The conference program doesn’t have abstracts, just paper titles. Prof. Volkmar had two talks on autism: “The Changing Face of Autism: An Introduction and Overview” and “Understanding Autism: Implications for Health Care”. This leaves us with the Times article as our source for information.

According to the Times:

In the new analysis, Dr. Volkmar, along with Brian Reichow and James McPartland, both at Yale, used data from a large 1993 study that served as the basis for the current criteria. They focused on 372 children and adults who were among the highest-functioning and found that over all, only 45 percent of them would qualify for the proposed autism spectrum diagnosis now under review. The focus on a high-functioning group may have slightly exaggerated that percentage, the authors acknowledge.

The Times has quotes from Catherine Lord (who, amongst other achievements, is one of the authors of the ADOS) who disagrees with Prof. Volkmar to some degree:

Dr. Lord said that the study numbers are probably exaggerated because the research team relied on old data, collected by doctors who were not aware of what kinds of behaviors the proposed definition requires. “It’s not that the behaviors didn’t exist, but that they weren’t even asking about them — they wouldn’t show up at all in the data,” Dr. Lord said.

The question of how the DSM 5 will change the criteria for how autism is defined has been a subject of great speculation and some study. One can find parents claiming that the DSM 5 is designed to redefine autism as only “high functioning” all the way to autistics worried that many with Asperger syndrome will no longer be classified as autistic.

The results presented by Prof. Volkmar would suggest that “classic” autism, PDD-NOS and Asperger syndrome would all see significant changes:

The likelihood of being left out under the new definition depended on the original diagnosis: About a quarter of those identified with classic autism in 1993 would not be so identified under the proposed criteria; about three quarters of those with Asperger’s would not qualify; and 85 percent of those with P.D.D.-N.O.S. would not.

As noted above, this is not the first study to consider the DSM 5 and autism. For example, a group from Finland published Autism spectrum disorders according to DSM-IV-TR and comparison with DSM-5 draft criteria: an epidemiological study. they found the DSM-5 draft criteria were ” less sensitive in regard to identification of subjects with ASDs, particularly those with Asperger’s syndrome and some high-functioning subjects with autism.”

Abstract
OBJECTIVE:

The latest definitions of autism spectrum disorders (ASDs) were specified in DSM-IV-TR in 2000. DSM-5 criteria are planned for 2013. Here, we estimated the prevalence of ASDs and autism according to DSM-IV-TR, clarified confusion concerning diagnostic criteria, and evaluated DSM-5 draft criteria for ASD posted by the American Psychiatry Association (APA) in February 2010.
METHOD:

This was an epidemiological study of 5,484 eight-year-old children in Finland, 4,422 (81%) of them rated via the Autism Spectrum Screening Questionnaire by parents and/or teachers, and 110 examined by using a structured interview, semi-structured observation, IQ measurement, school-day observation, and patient records. Diagnoses were assigned according to DSM-IV-TR criteria and DSM-5 draft criteria in children with a full-scale IQ (FSIQ) ?50. Patient records were evaluated in children with an FSIQ <50 to discover diagnoses of ASDs.
RESULTS:

The prevalence of ASDs was 8.4 in 1,000 and that of autism 4.1 in 1,000 according to DSM-IV-TR. Of the subjects with ASDs and autism, 65% and 61% were high-functioning (FSIQ ?70), respectively. The prevalence of pervasive developmental disorder not otherwise specified was not estimated because of inconsistency in DSM-IV-TR criteria. DSM-5 draft criteria were shown to be less sensitive in regard to identification of subjects with ASDs, particularly those with Asperger's syndrome and some high-functioning subjects with autism.
CONCLUSIONS:

DSM-IV-TR helps with the definition of ASDs only up to a point. We suggest modifications to five details of DSM-5 draft criteria posted by the APA in February 2010. Completing revision of DSM criteria for ASDs is a challenging task.

Advertisements

15 Responses to “New Definition of Autism May Exclude Many, Study Suggests”

  1. RAJ January 21, 2012 at 02:21 #

    Fred Volkmar led the DSM-IV task force that conducted the autism field trials for DSM-IV. Allen Francis was the editor of DSM-IV and has now distanced himself from what should have been the crowning achievement of his career in psychiatry, being selected as the editor for DSM-IV (1994).
    He has publicly stated that the field trials of DSM-IV failed to predict the false epidemics of autism, attentional disorders and bi-polar disorder.
    DSM5 is a response to the overdiagnosis of autism. Beginnning in with the introduction of DSM-III (1980)the criteria for autism diagnosis has been expanding with each sucessive edition of the DSM.

    http://www.unstrange.com/dsm1.html

    This is a natural response where the pendulum has swung too far and which is now heading back towards more restrictive diagnostic criteria.

    All it demonstrates is that no one can define autism based on behavior and if you can’t define a problem you can’t solve it.

    • Sullivan January 21, 2012 at 02:55 #

      “the crowning achievement of his career in psychiatry”

      That would be rather sad, actually. An administrative post like that. An important one, but a researcher would want to make a mark in original work typically.

      (note–Frances with an “e”)

      “All it demonstrates is that no one can define autism based on behavior”

      What a strange comment. Autism is and has been defined based on behavior. The existence proof is right there that your statement is incorrect. Do you mean that it isn’t a precise way of classifying a single entity, much less a plural entity as autism undoubtedly is?

      I’m sure those in the field would love a better method. It isn’t like they know a better way and are hiding it for some arcane purposes. The same goes for those working in the field in a great number of entries in the DSM.

      Got any other obvious observations to make?

  2. livsparents January 21, 2012 at 04:18 #

    Are you getting the feeling that Volkmar is shaking the proverbial hornets nest, to stir up opposition to the DSM5 or at least some careful scrutiny of it? I don’t know how well publicized it was, but I found the following on the DSM5 homepage…there is one more public commentary opportunity on the DSM5 coming up in the Spring of 2012:

    “The 2nd commenting period was not the final opportunity for you to submit feedback. In spring 2012, we will open the site for a third and final round of comments from visitors, which will again be systematically reviewed by each of the work groups for consideration of additional changes.”

    Look for some follow up by Volkmar sometime early spring…to coincide with the DSM5 public commentary date and/or autism awareness month in April…just a hunch

  3. Chris January 21, 2012 at 05:45 #

    I don’t know. My son has never been diagnosed with autism. When he was three years old the neurologist assured me that he was not autistic, but that was in 1991. With the new rules, I doubt he would qualify. But then again, his IEPs were all based in his needs, not a diagnosis.

    When he was a senior in high school the school psychologist noted that he would have had an autism diagnosis under the DSM-IV criteria, and mentioned he has several autistic characteristics (including stimming). Then she added that he would then have been in the school’s autistic program, and the result would be that he would have actually lost services.

    I have noticed over the years that some of his special preschool classmates have been diagnosed with autism as older children. Some were more functioning than my son, others not so much (one is still has severe neurological issues, but is a very sweet young man). Plus some of his classmates were dropped from all special ed. criteria prior to middle or high school (okay, the one kid with the hearing loss is still hearing impaired).

    This is why I am ambivalent about the DSM rules on autism. It is based on behavior, speech, language, etc. It is not something that is truly quantifiable like mobility, or my son’s friend who had to wear hearing aids. And since that young man’s hearing aids worked well enough he asked that he be removed into the high school’s deaf and hard of hearing program.

  4. Roger Kulp January 21, 2012 at 08:22 #

    You can talk all you want about autism being overdiagnosed,at the milder end of the spectrum,which is clearly a problem,but I do think there are too many people diagnosed with “autism”,who really have more complex,or unusual genetic syndromes.I think when you reach a certain number of comorbid conditions,it ceases to be autism,and it becomes (Fill in name of genetic syndrome)with “features of autism”.The trouble is many doctors are too ignorant or lazy to learn what these syndromes and diseases are,and test for them,or parents are not interested enough to keep up with advances in medicine,that would explain their child’s problems,be it Dravet Syndrome,or 22q11.2 deletion syndrome.

    The fact that schools,hospitals,and social agencies will give you services with an autism diagnosis,they wouldn’t with another diagnosis,is criminal in and of itself,and it is something I don’t see any group addressing.

    Just curious,can someone tell me how a non verbal learning disorder might effect full scale IQ,especially one like mine,where there was found to be a 40+ point difference between verbal and nonverbal scores?

  5. RAJ January 21, 2012 at 15:06 #

    Volkmar was in charge of the field trials for DSM-IV. As he stated in the paper, DSM-III-R (1987) was found to be overly broad and the field trial of DSM-IV (1994) was intended to correct the over diagnosis of autism cause by the introduction of DSM-III-R (1987).

    http://www.ncbi.nlm.nih.gov/pubmed/8067493

    The introduction of DSM-IV not only failed to correct the over diagnosis of autism in DSM-III-R (1987) it had exactly the opposite effect that was intended, over diagnosis actually substantially increased eg the myth of the so-called ‘autism epidemic’.

    Ironically Volkmar also led the trials for DSM-III-R.

    As Allen Frances observed, the field trials of DSM-IV failed to predict the false epidemics of autism, attentional disorder and bi-polar disorders.

    It is no wonder that Volkmar was not invited to lead the field trials of DSM5 given his appaling track record.

    He is in a position of desperatly trying to justify his own major contributions to the ‘autism epidemic’.

    As far as anyone being able accrutely define what autism actually is why do you think that every five to ten years the framers of various DSM editions keep updating and changing the diagnostic criteria.

    As far as DSM5 is concerned I’d rather they keep DSM-IV-TR (2000)in spite of the problem of over and mis diagnosis. DSM-IV at least gives all children with any developmental problems access to early intervention therapies by having a passport label to early intervention that might be denied with the introduction of a DSM5.

    • Sullivan January 21, 2012 at 18:34 #

      Ironically. Ironic that you use that.

      So clinical judgement was the correct approach 20 years ago for Volkmar but wrong now for Kim et al. In Korea?

      Your catch phrase “false epidemics of autism” reads to me given the context of your many discussions as “epidemic of false autistics”. Does that differ substantially from your views?

  6. farmwifetwo January 21, 2012 at 17:50 #

    I’m looking forward to the changes. My youngest (10) meets the criteria for Autistic Disorder under both the IV and the V. My eldest (12) will lose his dx with the V.

    But, IMO autism is a “DISABILITY” not a “way of being” and I’m tired of it being hijacked and it’s issues minimized and ignored by those who do not require supports.

  7. RAJ January 21, 2012 at 21:07 #

    Here’s the definition for of autism prior to 1980:

    DSM II (1968)

    295.8 Schizophrenia, childhood type

    This category is for cases in which schizophrenic symptoms appear before puberty. The condition may be manifested by autistic, atypical and withdrawn behavior; failure to develop identity separate from the mother’s; and general unevenness, gross immaturity and inadequacy of development. These developmental defects may result in mental retardation, which should also be diagnosed.

    The conensus prior to 1980 was that autism was a failure to develop an identify seperate from the mother’s. You have a great deal of faith in the infallibity of whatever the dogma of current thinking in psychiatry may be, until the next edition of DSM is published, then your fawning over current psychiatric dogma flips to the new authorities of dogma.

    The false epidemic of autism is not a catch phrase it was written by Allen Frances the editor in chief of DSM-IV

    • Sullivan January 22, 2012 at 03:13 #

      I’m not saying its a catch phrase. I’m saying you are hiding behind it.

      Your response was a complete dodge.

      Your contempt for the “not like my kid” autistics is obvious.

  8. Rebecca Banks January 22, 2012 at 08:03 #

    Arguably, the DSM is one of the most influential publications in our nation if not the world. Its contents have far-reaching political, social, and individual implications. However, the validity of the DSM is still hotly debated among professionals in many disciplines and has yet to be proven. As parents of children with spectrum diagnoses and authors of Bright Not Broken, we address the problems with the DSM system and its impact on children whose autism is masked by higher IQs. Contrary to popular opinion, and according to numerous autism experts, anywhere from two-thirds to three-quarters of autism’s population may be high functioning. To narrow the diagnosis to exclude the largest percentage of the autism population makes little sense, especially when DSM task force member, Catherine Lord, who developed the current “gold standard” for diagnosing autism, the ADOS, readily admits that this tool already misses many individuals with high functioning autism.

    We readily acknowledge the suffering of the minority population with classic autism. However, as a society we cannot ignore the desperately painful lives that so many high-functioning individuals lead because of social, communication, sensory, and other deficits: lives that Dr. Lorna Wing aptly characterizes as “a hellish nightmare” of broken relationships, failed careers, low self-esteem, isolation, and depression. In short, though their challenges are not as apparent as in those with classic autism, within the high-functioning population are many of our most innovative, gifted thinkers and inventors. Knowingly changing the diagnostic criteria will likely exclude these individuals from services that can free their gifts and talents. This is a crime not only against them, but also against our society and our future.

  9. David N. Andrews M. Ed., C. P. S. E. January 22, 2012 at 08:36 #

    RK: “Just curious,can someone tell me how a non verbal learning disorder might effect full scale IQ,especially one like mine,where there was found to be a 40+ point difference between verbal and nonverbal scores?”

    Well, sadly, there’s no easy answer to this. Full Scale IQ (FSIQ scores are computed from the sum totals of points scored from the sub-tests used in the IQ test battery being used. It isn’t simply the arithmetic mean of the verbal IQ (VIQ) and the Performance IQ (PIQ). So what happens to the FSIQ score really depends on the actual scores obtained across the sub-test profile. But – as I understand it anyways – the VIQ-PIQ discrepancy found in NVLDs comes from the fact that performance on the Performance parts of the test battery scores much lower on most of the sub-tests in that part of the battery. This would suggest that the extent of the difficulties experienced is great, both in individual tasks and also in the range of tasks in which scores are affected.

    But without knowing your subtest scores, and what test it was, it would be difficult to say much more than this. And I’d recommend against publishing your test scores on a public forum such as this.

    I hope this ha sbeen at least some assistance in understanding what happens.

  10. David N. Andrews M. Ed., C. P. S. E. January 22, 2012 at 08:40 #

    Sullivan: “As far as DSM5 is concerned I’d rather they keep DSM-IV-TR (2000)in spite of the problem of over and mis diagnosis. DSM-IV at least gives all children with any developmental problems access to early intervention therapies by having a passport label to early intervention that might be denied with the introduction of a DSM-5.”

    To be honest, if it were up to me, DSM would be shelved totally. ICD is usually better than that. DSM tends to be too conservative in its approach to defining anything on the autism spectrum. ICD – whilst not perfect – is more descriptive and tends to reflect the European research more than does DSM.

Trackbacks/Pingbacks

  1. Autism Blog – New Definition of Autism May Exclude Many, Study … | My Autism Site | All About Autism - January 21, 2012

    […] Read more from the original source: Autism Blog – New Definition of Autism May Exclude Many, Study … […]

  2. Autism Blog – New Definition of Autism May Exclude Many, Study … | My Autism Site | All About Autism - January 21, 2012

    […] See original here: Autism Blog – New Definition of Autism May Exclude Many, Study … […]

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

w

Connecting to %s

%d bloggers like this: