A Multisite Study of the Clinical Diagnosis of Different Autism Spectrum Disorders

5 Feb

This study came out towards the end of last year. Given the current interest in the DSM-5 diagnostic criteria and how they may impact the numbers of individuals diagnosed with PDD-NOS and Asperger syndrome, this seems timely.

The study had a large number of authors. As a multi-site study, this is not surprising. The lead author is Cathy Lord. She is part of the DSM-5 work group on neurodevelopmental disorders.

The author list and the abstract are below. I’ll pull the conclusion from the abstract out for now:

Clinical distinctions among categorical diagnostic subtypes of autism spectrum disorders were not reliable even across sites with well-documented fidelity using standardized diagnostic instruments. Results support the move from existing subgroupings of autism spectrum disorders to dimensional descriptions of core features of social affect and fixated, repetitive behaviors, together with characteristics such as language level and cognitive function

To put it simply (and with less precision, but let’s go with this): Whether one is diagnosed as Asperger, PDD-NOS or Autistic Disorder is more dependent on where one is diagnosed than what one’s scores are on the tests given.

Seems likely this is part of the reason why there’s a move to incorporate all ASD’s under a single label.

The “lines” between autistic disorder, PDD-NOS and Asperger syndrome are blurred to say the least.

Here is the full author list:

Lord C, Petkova E, Hus V, Gan W, Lu F, Martin DM, Ousley O, Guy L, Bernier R, Gerdts J, Algermissen M, Whitaker A, Sutcliffe JS, Warren Z, Klin A, Saulnier C, Hanson E, Hundley R, Piggot J, Fombonne E, Steiman M, Miles J, Kanne SM, Goin-Kochel RP, Peters SU, Cook EH, Guter S, Tjernagel J, Green-Snyder LA, Bishop S, Esler A, Gotham K, Luyster R, Miller F, Olson J, Richler J, Risi S.
Source

Weill Cornell Medical College, White Plains (Dr Lord), Nathan Klein Institute for Psychiatric Research, Orangeburg (Dr Petkova), and Department of Child and Adolescent Psychiatry, New York University (Drs Petkova and Gan and Ms Lu), Division of Child and Adolescent Psychiatry, Columbia University Medical Center (Drs Algermissen and Whitaker), and Simons Foundation (Ms Tjernagel), New York, New York; Autism and Communication Disorders Center (Drs Green-Snyder, Gotham, Miller, Olson, and Risi and Ms Hus) and Departments of Pediatrics and Human Genetics (Dr Martin), University of Michigan; Ann Arbor; Emory University School of Medicine (Drs Ousley, Klin, and Saulnier), and Marcus Autism Center, Children’s Healthcare of Atlanta (Dr Klin), Georgia; Center for Autism Research, Children’s Hospital of Philadelphia, Pennsylvania (Dr Guy); Departments of Psychiatry (Dr Bernier) and Psychology (Dr Gerdts), University of Washington, Seattle; Departments of Molecular Physiology and Biophysics and Psychiatry, Vanderbilt Kennedy Center (Dr Sutcliffe), and Departments of Pediatrics (Drs Warren and Peters) and Psychiatry (Dr Warren), Vanderbilt University Medical Center, Nashville, Tennessee; Division of Developmental Medicine, Children’s Hospital Boston, Harvard Medical School, Massachusetts (Drs Hanson, Hundley, and Luyster); Center for Autism Research and Treatment and Department of Psychiatry, Semel Institute of Neuroscience, University of California Los Angeles (Dr Piggot); Department of Psychiatry, Montreal Children’s Hospital, Québec, Canada (Drs Fombonne and Steiman); Thompson Center for Autism and Neurodevelopmental Disorders, University of Missouri, Columbia (Dr Miles); Department of Pediatrics, Baylor College of Medicine, Houston, Texas (Drs Kanne and Goin-Kochel); Institute for Juvenile Research, Department of Psychiatry, University of Illinois at Chicago (Dr Cook and Mr Guter); Cincinnati Children’s Hospital Medical Center, Ohio (Dr Bishop); Department of Pediatrics, University of Minnesota, Minneapolis (Dr Esler); and Department of Psychological and Brain Sciences, Indiana University, Bloomington (Dr Richler).

And here the abstract:

CONTEXT:

Best-estimate clinical diagnoses of specific autism spectrum disorders (autistic disorder, pervasive developmental disorder-not otherwise specified, and Asperger syndrome) have been used as the diagnostic gold standard, even when information from standardized instruments is available.

OBJECTIVE:

To determine whether the relationships between behavioral phenotypes and clinical diagnoses of different autism spectrum disorders vary across 12 university-based sites.

DESIGN:

Multisite observational study collecting clinical phenotype data (diagnostic, developmental, and demographic) for genetic research. Classification trees were used to identify characteristics that predicted diagnosis across and within sites.

SETTING:

Participants were recruited through 12 university-based autism service providers into a genetic study of autism.

PARTICIPANTS:

A total of 2102 probands (1814 male probands) between 4 and 18 years of age (mean [SD] age, 8.93 [3.5] years) who met autism spectrum criteria on the Autism Diagnostic Interview-Revised and the Autism Diagnostic Observation Schedule and who had a clinical diagnosis of an autism spectrum disorder. Main Outcome Measure Best-estimate clinical diagnoses predicted by standardized scores from diagnostic, cognitive, and behavioral measures.

RESULTS:

Although distributions of scores on standardized measures were similar across sites, significant site differences emerged in best-estimate clinical diagnoses of specific autism spectrum disorders. Relationships between clinical diagnoses and standardized scores, particularly verbal IQ, language level, and core diagnostic features, varied across sites in weighting of information and cutoffs.

CONCLUSIONS:

Clinical distinctions among categorical diagnostic subtypes of autism spectrum disorders were not reliable even across sites with well-documented fidelity using standardized diagnostic instruments. Results support the move from existing subgroupings of autism spectrum disorders to dimensional descriptions of core features of social affect and fixated, repetitive behaviors, together with characteristics such as language level and cognitive function.

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10 Responses to “A Multisite Study of the Clinical Diagnosis of Different Autism Spectrum Disorders”

  1. Mike Stanton February 5, 2012 at 17:06 #

    No Fred Volkmar, then?

  2. RAJ February 7, 2012 at 15:44 #

    It’s not possible to predict whether DSM5 will ‘stop’ the autism epidemic in its tracks or will actually accelerate the autism epidemic. DSM-IV (1994) was designed to stop the overdiagnosis of autism that occurred with the publication of DSM-III-R (1987) but had the opposite effect.

    Current psychiatric opinion in autism that is being reflected in the DSM5 proposals is that autism is dimensional ranging from profoundly handicapped to normal variation. Take the introversion/extroversion quiz published in Time magazine. If many of the questions seem similar to autism trait quizzes (autism spectrum questionnaire, social reciprocity scale), its because they are.

    http://healthland.time.com/2012/01/27/quiz-are-you-an-introvert-an-extrovert-or-an-ambivert/

    About 20% or more people taking the quiz score as being likely to have an introverted personality type. The psychiatric dogma of defining normal characteristics personalty traits as a mental disorder,for example (geeks=autism) continues to expand.

    Plomin’s group in the UK has been reporting on ‘autistic traits’ in the general population by recruiting thousands of twin pairs recruited from the TEDS twins registry and have reported that 5% of all general population children were found to possess ‘extreme autistic-like traits’ and “Around 10% of all children showed only social impairment, only communicative difficulties or only rigid and repetitive interests and behavior, and these problems appeared to be at a level of severity comparable to that found in children with diagnosed ASD in our sample’.

    http://dept.wofford.edu/neuroscience/neuroseminar/pdfFall2011/4-explaining-autism.pdf

    Its unkown whether DSM5 will stop the autism epidemic in its tracks or will further expand population prevelance rates to 5%, 10% or even 20%.

    • Sullivan February 7, 2012 at 19:42 #

      It’s not possible to predict whether DSM5 will ‘stop’ the autism epidemic in its tracks or will actually accelerate the autism epidemic.

      That’s not the goal of the DSM 5. Are you aware of that? Given your next statement, I don’t think you are.

      I’ve got a strange idea–how about make the DSM 5 as a method to accurately diagnose all autistics? Not to chase down some political viewpoint of yours or someone you misquote.

      If you take a quiz in Time Magazine as “psychiatric dogma” it is clear how your logic train went off the tracks.

      Current psychiatric opinion in autism that is being reflected in the DSM5 proposals is that autism is dimensional ranging from profoundly handicapped to normal variation. Take the introversion/extroversion quiz published in Time magazine.

      I assume you have little idea how strange the above reads. The second sentence just does not follow from the first. Why should we consider the quiz in Time magazine? It isn’t related to autism. It isn’t related to the discussion at all. Are we going to be taking a quiz from Cosmo next?

      Its unkown whether DSM5 will stop the autism epidemic in its tracks or will further expand population prevelance rates to 5%, 10% or even 20%.

      Hysteria. Sorry to call it out, but that’s what you are doing there.

  3. daedalus2u February 8, 2012 at 19:12 #

    This is interesting. If I am reading it correctly, it seems to indicate that there is a degree of subjectiveness in an ASD diagnosis that can’t be eliminated using present definitions and diagnostic criteria.

    That raises the question of where the subjectivity of ASD diagnosis lies, in the person with the ASD, or in the clinician doing the diagnosis? If the subjectivity is in the clinician, then there isn’t an objective thing called “autism”, it is a categorization that will change as the clinician population changes.

    This also means that there will always be false positives and false negatives, and these will be different for different clinicians.

  4. Elizabeth Lucye Robillard February 11, 2012 at 11:53 #

    Daedalus2u wrote: ‘That raises the question of where the subjectivity of ASD diagnosis lies, in the person with the ASD, or in the clinician doing the diagnosis? If the subjectivity is in the clinician, then there isn’t an objective thing called “autism”, it is a categorization that will change as the clinician population changes.

    This also means that there will always be false positives and false negatives, and these will be different for different clinicians.’

    And finally a way forward for science to help determine the best way forward to help alleviate suffering (where it exists) and demonstrate effectiveness in doing so, rather than making ‘blood money’ from creating labels and theory, as they currently do, in my view.

    Thanks.

  5. usethebrainsgodgiveyou February 11, 2012 at 16:04 #

    “rather than making ‘blood money’ from creating labels and theory, as they currently do, in my view.”

    I’m looking to have my 18 year old son diagnosed as dyslexic, as he always was. It’s not as scary as autistic…and “specialists” not as able to manipulate parental fears.

    Kinda pisses me off I, nor anyone else, recognized it. Only his “autistic behavior” was recognized…to hell with his learning differences that could have been remedied somewhat, as the knowledge is out there.

    What if Helen Keller had been recognized only by her behavior, and not her needs? How far ya think that’d got ‘er?

    That’s whats f*cked (excuse my french) about subjectivation of behavioral anomalies, turning them into plagues…

  6. Elizabeth Lucye Robillard February 19, 2012 at 22:53 #

    Seems I couldn’t get a reply I wanted to here. The truth REALLY hurts some people. Good.

  7. Chris February 20, 2012 at 00:10 #

    ?

    You asked a question?

  8. Elizabeth Lucye Robillard March 12, 2012 at 18:02 #

    I want to know why my son Jamie has been tortured – why kids suffering from Angelman Syndrome and other SLD’s, have
    been forcefully made to ‘comply’ with everything (behavioral modification or ‘patterning, that is actually illegal, during the 70’s it was outlawed!) when children with Anglemans’, Rhetts
    and so on, are not abused children, they are not psychiatric injured – unless the parents have a problem with the disability in which case they sometimes DO face abuse- or unless someone spots a child rape possibility – see Hollie Greig- there is
    a physical cause for ‘autism’ OR a psychiatric one that means child abuse has occurred to cause life-time injury?
    I met a TWO YEAR OLD girl with severe mental health problems,but she wasn’t autistic, she was mentally ill. What caused it?
    Now I don’t know about YOU, but as a student of health and
    science, I believe in cause and effect. Something caused these ‘autistic’ children to suffer
    be it the parent’s fault for drug-taking/alcohol abuse.inability to love, in other words – is Autism a manifestation
    of child abuse, if not, what IS the cause of the problem as I have never met two ‘autistic’ people the same
    or even similar. My own son is completely unique and was a very happy baby, yet many years
    were spent demonising me as a mother. Some of that was spite from nasty people, but my son and I are innocent
    people who have been terrorised from this LIE of a label that is ‘autism’. WHAT causes
    Autism? WHO PROFITS from this false label? Behaviorism. Behavioral Modification like ABA should never, never be used on scared or Severe Learning Disabled – it is meant for wayward dogs, or children suffering from bad parenting, not for wounded little children and people. Stop the abuse of the innocent NOW.

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