Evidence of Autism in a Psychiatrically Hospitalized Sample

4 Nov

I’ve been meaning to write something on this for a while. This was a talk given at IMFAR this year (2008) by one of my favorite research groups–that of Prof. David Mandell. If you’ve listened in on IACC meetings you’ve heard him. Much more, if you have been watching the literature, you’ve likely seen his papers.

Prof. Mandell asks a lot of questions that I think are important and, all to often, overlooked. As an example, he has documented the late diagnoses of ASD’s in ethnic minorities in the United States.

One presentation at IMFAR that caught my eye was:

Evidence of Autism in a Psychiatrically Hospitalized Sample

The abstract is quoted below:

L. J. Lawer , Psychiatry, University of Pennsylvania, Philadelphia, PA
E. S. Brodkin , Psychiatry, University of Pennsylvania, Philadelphia, PA
D. S. Mandell , Psychiatry, University of Pennsylvania, Philadelphia, PA

Background: The similarity of the symptoms of ASD with other psychiatric disorders, and the fact that misdiagnosis may lead to inappropriate treatment, has led to interest in the prevalence of ASD in psychiatric populations. The four studies in this area have estimated the prevalence of ASD in adult psychiatric samples to be between 0.6% and 5.3%.

Objectives: To determine the potential prevalence of ASD among psychiatric inpatients and characteristics that discriminate between adults likely to have ASD and other psychiatric disorders.

Methods: The sample included 350 out of 396 patients in one state psychiatric hospital in Pennsylvania. Nursing staff completed the Social Responsiveness Scale (SRS) for each subject. Chart reviews were conducted to examine functioning and medical history. T-tests and chi-square tests were used to examine differences in clinical presentation, putative diagnoses, and medical history among patients scoring above 100 on the SRS (a score highly specific for autistic disorder in the general population) and patients scoring below 100.

Results: Twenty-one percent of patients received an SRS score over 100. They were significantly more likely than other patients to be diagnosed with undifferentiated schizophrenia (30% vs. 22%) and have indication in their charts of childhood onset or a “long history” of psychiatric problems (68% vs. 50%), not starting high school (20% vs. 8%), abnormal movements (20% vs. 10%), gastro-intestinal problems (34% vs. 23%), and mental retardation (15% vs. 5%). Analyses of differences in medication use and self-injurious behaviors are ongoing.

Conclusions:While not conclusive regarding the prevalence of ASD in a psychiatric inpatient sample, these findings are provocative and suggest the need for further research. We currently are conducting patient and family interviews to augment existing data. Improved diagnostic assessment for adults with ASD, especially those that discriminate ASD from the negative symptoms of schizophrenia, may have important treatment implications.

The majority of the overall population had schizophrenia diagnoses (80%), with personality disorder, substance abuse and mental retardation diagnoses also present.

The researchers had nurses test inpatients using the Social Responsiveness Scale (SRS), and found that a significant number (21%) of the inpatients scored in a range indicating an ASD.

3% of those with SRS scores >100 had an existing ASD diagnosis. Compare that to 1% of those with scores <100 on the SRS. But, you can see that with 21%, this inpatient population had a much higher autism rate than the roughly 1% expected for the general population.

Interestingly, there was a higher rate of GI problems in those with high SRS scores.

The ages? These are adults. Not just young adults, either. They ranged in age from 20-82, with an average of 49 (SD of 13) years.

Why is this important? There are many reasons. First, before this study was presented at IMFAR, the results were referenced by one of the world’s top-cited autism researchers, Nancy Minshew, in a news article.

The other phenomenon was that some autistic children were labeled as schizophrenic, and many may have ended up in state hospitals or other institutions, she said.

There is even a kind of logic to that, Dr. Minshew said, because some of the hallmarks of schizophrenia — behaving oddly, a lack of facial expressions, poor eye contact, speaking in a monotone and using fewer gestures than normal — are “essentially the same” in both autism and schizophrenia.

David Mandell, an epidemiologist at the University of Pennsylvania medical school, recently surveyed the adult patients in Norristown State Hospital in Eastern Pennsylvania, nearly all of whom are labeled schizophrenic, and found that about 20 percent of them meet the behavioral criteria for being autistic.

The response? Dr. Minshew was openly mocked by “advocates” who apparently couldn’t see past the fact that these results pose a challenge to the “epidemic”. Kim Stagliano, in a Huffington Post Piece, was annoyed that Dr. Minshew would say that in her experience there is “not an increase in the number of cases, but are an improvement in recognition.” On the age of autism blog, Ms. Stagliano went on to say,

Does your child, or do you (if you are an adult with autism) appear schizophrenic*? Has any doctor or therapist ever uttered the words schizophrenia and autism in the same sentence to you?

This declaration of Dr. Minshew’s is repulsive and offensive to all people with autism. All people with autism, regardless of what you think of cause or treatment.

Amongst the mistakes Ms. Stagliano makes in the above is asking the wrong question. The question is not “do people with autism appear schizophrenic”, but, rather, do people with schizophrenia (and other) deserve diagnoses have autism? Further, are these people misdiagnosed or do they deserve autism in addition to their other diagnoses?

Ms. Stagliano isn’t the only one to attack Dr. Minshew’s statements without thinking them through (Dr. Minshew’s statements made it clear that she was basing her statements on actual studies, not just her opinion). I’d like to point out that I didn’t bring Ms. Stagliano’s comments in as a mere sidetrack. Much as the comments annoyed me, they point to a more important, systematic problem: The “advocates” of the past 10 years have made a big mistake in concentrating solely on children with autism.

First and foremost, it is wrong to the allow fellow citizens to go without proper supports. This is especially true if (as noted in the talk) there is the possibility of de-institutionalizing these people. We must insure that these adults and those who will care for them have a proper understanding of the real issues each adult faces.

Second, it is just plain short-sighted. For parents of children with autism, autistic adults are the great untapped resource. We have much to learn, much that will help our children. It is in our own self-interest to demand that adults with autism be identified so we can learn from their hard-fought lessons.

I don’t know a better way to emphasize this than to restate it: It is in our own self-interest to demand that adults with autism be identified so we can learn from their hard-fought lessons.

[note: I edited this piece for clarity and emphasis after posting. The substance was not changed]

39 Responses to “Evidence of Autism in a Psychiatrically Hospitalized Sample”

  1. Sullivan November 4, 2008 at 02:00 #

    For anyone who says that we are not better at identifying people with autism now than in the past, I have one question:

    Shouldn’t we be?

    We have misidentified people in the past. Isn’t it about time we got it right?

  2. Joseph November 4, 2008 at 02:45 #

    This is consistent with Nylander & Gillberg (2001) who find that ~90% of adult autistics in an outpatient psychiatric hospital did not have a prior autism diagnosis; and that the most common diagnosis among them was schizophrenia.

    It doesn’t tell us much about autism in the population outside psychiatric hospitals, but there are many lbits and pieces of evidence that show autism to be common in all kinds of adults.

  3. Schwartz November 4, 2008 at 03:16 #

    Sullivan,

    I’ll divide my comments into 2 sections.
    1) Discussion of the Study:
    Great work in posting this. One thing I found interesting is that they are also testing the effectiveness in evaluating the SRS’ ability to separate out possible Autistic populations in the hospital setting. I’ve only found false positive statistics on it’s effectiveness (.7) as a replacement for Autism diagnosis but never any false negative ones. This study might give us an indication. I also found the high rate of GI problems across the population disturbing and I wonder why there seems to be so little investigation into GI issues and psychiatric problems.

    I agree completely that this type of investigation has huge implications for treatments as the Authors note. This is another far too common example of how psychiatry has a nasty habit of broadly grouping people with little understood problems and attempting to manage the disorder through medication without ever investigating subtypes or searching for physiological problems that could be treated. I wonder how many of those in the hospital were properly treated for their GI issues? I would bet that the Autism spectrum has fallen into the same broad stroke brushes as Schizophrenia has in the past. I am glad Autism is receiving much more attention.

    More study into this is absolutely justified and should be done to aid the treatment of any misdiagnosed patients.

    2) Discussion of it’s implications in explaining the “hidden Horde” and Kim Stagliano/Minshew
    First, Dr. Minshew did not quote any studies when making her comments. They were comments of opinion: “I used to think there were more cases, but I don’t think so any more.”

    Second, a study such as this may indicate areas for further research but it does not provide any evidence as to the actual prevalence of Autism in past generations. You need a lot more accurate data than this. For Dr. Minshew to make these comments on a study like this are equivalent to making broad brush statements on vaccines based on parent polls of the timing of the onset of Autism after vaccination. Neither are conclusive scientific data. A bit of inconsistent standards by my observation.

    As for Kim: I do not like her writing style, but you are misleading in your comments about her, and you pretty clearly quoted her out of context. Your quote of hers is referring to the following Minshew comment: “The other phenomenon was that some autistic children were labeled as schizophrenic, and many may have ended up in state hospitals or other institutions, she said.” There is still little evidence that there was a significantly higher rate of childhood schizophrenia in the past. This study here does not even point to that. THere is no evidence from this study any of the patients were diagnosed with childhood schizophrenia (a rarely diagnosed illness). From the way it reads, it is very likely they were diagnosed later as adults. This makes Dr. Minshew’s comments look a little silly. Unless what she really meant was that the children were misdiagnosed and later diagnosed with Schizophrenia as adults. But that’s not what she said.

    We still need real data to convince me and a lot of others that there was a prevalence anywhere near 1/66 boys who ultimately received a schizophrenia diagnosis.

    But this study is a good thing and should be followed up.

  4. Sullivan November 4, 2008 at 06:44 #

    Schwartz–

    the title of the news article started with the word “studies”. Further, it was clear from the article that Dr. Mandell had data in hand. If Ms. Stagliano wants to take Dr. Minshew to task, acting as though Dr. Minshew was basing this on mere opinion, Ms. Stagliano can accept being told she was incorrect.

    Your statement about whether there was more childhood schizophrenia in the past is quite odd.

    And, yes, there is evidence that some might have been diagnosed with childhood schizophrenia. Not hard evidence, but the fact that some of the patients had “early onset” indicated in their charts, and given the age and the current diagnoses, that is evidence that some might have had that diagnosis. Either way, it is off the subject. The point is, made clearly in the article, some people in psychiatric hospitals today are likely mislabeled. Ms. Stagliano was acting as though this was an opinion, rather than a measured event.

    We still need real data to convince me and a lot of others that there was a prevalence anywhere near 1/66 boys who ultimately received a schizophrenia diagnosis

    I don’t know if you’ve noticed, but I have no intention of convincing you of anything.

    I don’t see the point in taking on that task on someone who, having spent so much time ghosting around the autism debate, still doesn’t understand the fundamentals. Your statement above makes that pretty clear.

    No one is saying that all people with ASD’s were diagnosed with childhood schizophrenia in past years. First, people with Asperger’s most certainly were not diagnosed with childhood schizophrenia much, if at all. PDD-NOS, likely not much either. Even autism was likely not diagnosed–what was the point when the destination was likely the same with or without the diagnosis? How many child psychologists were there in 1947, say, to make the diagnoses?

    But, you’ve heard all that before and, for whatever reason, it hasn’t sunk in. ASD and Autism are used interchangably quite often, but in citing the statistics (that you are taking from educational data, not reliable sources) is a bit of a cheat, as you know the difference.

    Have you ever been to an autism-specific classroom? Let me tell you, many of the kids in the classroom in our area would not have received diagnoses of “childhood schizophrenia”. Many more in the SDC’s, kids who are clearly autistic by today’s standards, would not either. And that doesn’t even get into the kids with inclusive placements.

    Did you take a look at the Pediatrics article by Dr. Mandell’s group? Did you notice that the average age–in modern times–for diagnosing Asperger syndrome is about 7. Somehow, I find it entirely plausible that people with AS could go undiagnosed, especially in previous decades, until adulthood.

  5. Joseph November 4, 2008 at 15:39 #

    Second, a study such as this may indicate areas for further research but it does not provide any evidence as to the actual prevalence of Autism in past generations.

    Of course it doesn’t. And there’s no way to provide a number and say “this is an accurate prevalence of autism in adults.” We only know a rough prevalence in some populations (psychiatric patients, people with MR, people with language disorders, adults with ADHD, adults with OCD, a group of students at Cambridge University, etc.) You can do some Math with that and come to no-nonsense conclusions, though.

    The important thing about this particular study is that it tells us autism has been missed in adults, and it has been missed considerably. If autism had been missed 90% of the time in the past, what does this tell you?

  6. Patrick November 4, 2008 at 15:39 #

    As Ms Stagliano is not ‘all autistics’ I think that part of her comment is unqualified. I have received more insult from the AoA bloggers than from Dr Minshews statements. Kim overinflates herself.

    Michelle has also posted a nice look at the denial of adult autism cases over at:
    http://autismcrisis.blogspot.com/2008/11/more-autism-speaks-epidemiology.html

  7. Socrates November 4, 2008 at 20:19 #

    I would like to suggest that when we’ve collated the mis-diagnosed autistics in psychiatric institutions, the undiagnosed being treated for co-morbids and substance abuse, those in prison and those we’ve lost through self-harm – the missing horde will have been found.

  8. Schwartz November 5, 2008 at 02:56 #

    And, yes, there is evidence that some might have been diagnosed with childhood schizophrenia. Not hard evidence, but the fact that some of the patients had “early onset” indicated in their charts, and given the age and the current diagnoses, that is evidence that some might have had that diagnosis.

    Dr. Minshew was using the Childhood Schizophrenia misdiagnosis as one of two possible scenarios to account for the lower observed autism rate among children in the past. If this is to explain away such a large prevalence in the past, then there must have been substantial number of misdiagnosis and there is no evidence that has been referenced to indicate this. I am certain it has happenedd in the past, but she is stating it must have happened in numbers that aren’t backed up by any evidence I’ve seen.

    Neither your study nor any other I’ve read or seen referenced by Dr. Minshew explains how she arrived at HER opinion (and opinion it is as she clearly stated) about misdiagnosis of childhood schizophrenia.

    I don’t know if you’ve noticed, but I have no intention of convincing you of anything.

    If you read what I stated, I didn’t specifically ask you to convince me at all, but it’s pretty funny that you state this, make a personal judgement and then try to provide some data anyways.

    No one is saying that all people with ASD’s were diagnosed with childhood schizophrenia in past years. First, people with Asperger’s most certainly were not diagnosed with childhood schizophrenia much, if at all. PDD-NOS, likely not much either. Even autism was likely not diagnosed—what was the point when the destination was likely the same with or without the diagnosis? How many child psychologists were there in 1947, say, to make the diagnoses?

    I agree with this but that’s not what Dr. Minshew said. It would have made a lot more sense. Dr. Minshew is using a childhood schizophrenia misdiagnosis as one of two explanations as to why she thinks the high prevalance rates of Autism haven’t changed historically.

    Did you take a look at the Pediatrics article by Dr. Mandell’s group? Did you notice that the average age—in modern times—for diagnosing Asperger syndrome is about 7. Somehow, I find it entirely plausible that people with AS could go undiagnosed, especially in previous decades, until adulthood.

    I agree completely. But unfortunately that’s not what Dr. Minshew said. I also haven’t seen any evidence that rates of misdiagnosis ranged anywhere near the current prevalence rates. But again, that is what Dr. Minshew is implying with her own opinion.

    Michelle has also posted a nice look at the denial of adult autism cases over at:
    http://autismcrisis.blogspot.com/2008/11/more-autism-speaks-epidemiology.html

    Patrick’s reference is interesting, but also basically an opinion piece when it comes to the “missing” Adult population. All of the study references provided only talk about recent data, not data about adult populations. However, the analysis around the recent trends is certainly worth the read.

    The term “epidemic” means unexpected, and does not imply growth. If the rates have been constant, the high rate is still unexpected and alarming to many so the term epidemic is quite applicable regardless of past prevalence rates.

    I would like to suggest that when we’ve collated the mis-diagnosed autistics in psychiatric institutions, the undiagnosed being treated for co-morbids and substance abuse, those in prison and those we’ve lost through self-harm – the missing horde will have been found.

    I think this hypothesis from Socrates is far more likely than that proposed by Dr. Minshew. As I’ve stated in the past, I have not drawn a personal opinion as to whether the number of Autistic adults has a similar prevalence range to today.

    The important thing about this particular study is that it tells us autism has been missed in adults, and it has been missed considerably. If autism had been missed 90% of the time in the past, what does this tell you?

    Joseph, it tells me that we need to find out the exact rate of misdiagnosis — by performing the followup study — and then we need to find out how prevalent the study population is in the overall population. That would also require more study.

  9. dr treg November 5, 2008 at 12:48 #

    How can misdiagnosis occur if the diagnosis is not based on a newly discovered sensitive/specific blood test or other investigation which was not available years ago?
    The clinical history and examination at the time of diagnosis were presumably very similar to when the diagnosis was reviewed and the name changed from childhood schizophrenia to autism.
    As usual the validity of psychiatric diagnosis is brought into question as the two diseases are often not discrete entities.

  10. Ruth November 5, 2008 at 14:51 #

    One psychatrist did mention schizophrenia when examining my child. The neurologist
    said PDD-NOS. This is till happening, but to a lesser extent.

  11. Sullivan November 5, 2008 at 15:26 #

    the other phenomenon was that some autistic children were labeled as schizophrenic, and many may have ended up in state hospitals or other institutions, she said.

    Emphasis added for those who apparantly missed it (repeatedly).

  12. Joseph November 5, 2008 at 22:11 #

    Joseph, it tells me that we need to find out the exact rate of misdiagnosis—by performing the followup study—and then we need to find out how prevalent the study population is in the overall population. That would also require more study.

    There’s no such thing as the exact rate of misdiagnosis, and I’m not sure these can truly be called misdiagnoses. What to one researcher is autism might not be to another. So any such results will depend on who’s doing the research, the methodology, the population observed, etc.

    Roughly, though, 90% of adult autistics were missed. This is a replicated result. It is what it is, and it clearly means (1) autism is very much missable, and (2) the autism epidemic hypothesis is undermined.

  13. RAJ November 5, 2008 at 23:44 #

    “The researchers had nurses test inpatients using the Social Responsiveness Scale (SRS), and found that a significant number (21%) of the inpatients scored in a range indicating an ASD”.

    What garbage. The SRS is not a diagnostic tool for ‘autism’ The authors (Constantino) never made the claim that it was. It is a personality test. This test cannot be used to make a diagnosis of ‘autism’ it is used to get a measure on what side of a Bell Curve of normal personality traits between introverted and extroverted personlity types the person given the questionaire falls on.

    High scores on that test can be found in many neurologically impaired people including autism, schizophrenia, mentally retarded, adult stroke patients and elerly patients with varying degres of dementia.

  14. Sullivan November 6, 2008 at 02:07 #

    RAJ,

    if you follow the link provided in the post, you will find that the SRS is described as:

    Distinguishes autism spectrum conditions from other child psychiatric conditions by identifying presence and extent of autistic social impairment

    Now, if you wanted to complain that they are targeting the wrong age range than is appropriate for that test, you’d have something to say. But, this isn’t intended as a definitive study–note that it isn’t published yet. It is an indication of what may be happening in the system.

  15. Schwartz November 6, 2008 at 04:19 #

    Sullivan,

    Since you missed it again, “some” has to account for quite a large number if you read the full context of her argument.

  16. Sullivan November 6, 2008 at 05:25 #

    Let’s take a closer look at the “full context” of Dr Minshew’s argument:

    Nancy Minshew, the director of the University of Pittsburgh’s Center for Excellence in Autism Research, said last week, “I used to think there were more cases [than in past years], but I don’t think so any more.” She is now convinced that the higher numbers are “not an increase in the number of cases, but are an improvement in recognition.”

    In past decades, she said, it was often hard to get doctors or schools to diagnose higher-functioning children as having autism. They were often labeled as having “behavior difficulties.”

    And Schwartz’ statement:

    We still need real data to convince me and a lot of others that there was a prevalence anywhere near 1/66 boys who ultimately received a schizophrenia diagnosis

    But, if I put your recent comment in this context, it sounds like you are trying to say that the 1/66 boys is just “some” of the people with autism (not to mention ASD’s)?

    Your statements are not consistent. Before you were trying to make it sound like Dr. Minshew was trying to account for your “1 in 66” number with schizophrenia diagnoses. Now it is “some”.

    P.s. what are people going to do in the future to claim an “epidemic”? Being impatient, everyone is jumping the gun to claim higher and higher prevalences for autism, using special education numbers or just plain made up numbers. What happens when the CDC comes out with a study saying he prevalence in the US is 1 in 125 and everyone has already been pushing 1 in 66 or some other number?

    Which brings on a similar question: you are using a prevalence number that is clearly in disagreement with the number cited by the CDC. Yet, you seem to have problems withe the idea that prevalence numbers can be inaccurate. Odd argument, if you ask me.

  17. RAJ November 6, 2008 at 14:19 #

    There is no ‘autism epidemic’ it is entirely a myth created by behavioral geneticists who have abandoned the definition of autism and expanded it to the point where ‘autism’ label can be applied to large number o cases in any neurologically impaired population, as well as people who are perfectly normal but do not fit into the definition of normality. In the 1950’s there was another unexplained rise in the incidence of ‘autism’ and Leo Kanner himself thorughly debunked the myth of that ‘epidemic’:

    http://neurodiversity.com/library_kanner_1965.html

    Kanner wrote in 1965:

    “This sage advice was not heeded by many authors. While the majority of the Europeans were satisfied with a sharp delineation of infantile autism as an illness sui generis, there was a tendency in this country to view it as a developmental anomaly ascribed exclusively to maternal emotional determinants. Moreover, it became a habit to dilute the original concept of infantile autism by diagnosing it in many disparate conditions which show one or another isolated symptom found as a part feature of the overall syndrome. Almost overnight, the country seemed to be populated by a multitude of autistic children, and somehow this trend became noticeable overseas as well. Mentally defective children who displayed bizarre behavior were promptly labeled autistic and, in accordance with preconceived notions, both parents were urged to undergo protracted psychotherapy in addition to treatment directed toward the defective child’s own supposedly underlying emotional problem.

    By 1953, van Krevelen rightly became impatient with the confused and confusing use of the term infantile autism as a slogan indiscriminately applied with cavalier abandonment of the criteria outlined rather succinctly and unmistakably from the beginning. He warned against the prevailing “abuse of the diagnosis of autism,” declaring that it “threatens to become a fashion.” A little slower to anger, I waited until 1957 before I made a similar plea for the acknowledgment of the specificity of the illness and for adherence to the established criteria”

    The emergence of a perceived ‘autism’ epidemic can be traced to 1987 and 1994 when the exposion began. In 1980 DSM-III introduce Kanner’s definitin as part of the diagnostic criteria for ‘autism, ‘A pervasive lack of responsiveness to other people’. By 1994 (the start of the epidemi’, Kanner’s definition had been removed and replaced by the vague, ambisous and subjective ‘Qualitative impairment in social reciprocity’. Instead of a lack of resonsiveness to the existence of other people, social anxiety, introverted personality types became the new definition.

    DSM-IV and ICD-10 definitions were quickly followed by the Gold Standard diagnostic tools such as ADOS, ARI-R an AUTI-R.

    Romanian orphans were adopted into the UK were fund to have high rates of ‘Autism’, diagnosed by these Gold Standard diagnostic tools. Their ‘autism’ was caused by extreme social isolation in infancy ater being placed in horrendous Romanian orphanages. If you believe in the new definition of ‘autism’ then you have to believe that extreme emotional deprivation (ie Refrigerator Mother) can ’cause’ autism. After all, the Romanian orphans met full diagnostic criteria for autism using Gold Standard diagnostic tools:

    http://www.ncbi.nlm.nih.gov/pubmed/16167089?

  18. Socrates November 6, 2008 at 16:36 #

    “[the]‘autism’ label can be applied to large number o cases in any neurologically impaired population, as well as people who are perfectly normal but do not fit into the definition of normality”

    This is typical of the diagnostic attitude in the UK:

    • Not everyone on the autism spectrum needs a diagnosis – this should be reserved for those who need it to access help

    “perfectly normal but do not fit into the definition of normality”

    Please supply your definition of “perfectly normal” and “normal”.

    Some thing else:

    All this started 40
    years ago with Donald T., now a 45-year-old
    bank clerk, whose townspeople know him to
    be the first reported specimen of what many
    of my colleagues call ‘the Kanner
    Syndrome.’

    Doesn’t sound very Low Functioning Autism to me..

  19. George November 6, 2008 at 20:00 #

    RAJ,

    Just what is the point you’re trying to make?

    HFA=nothing, so shut up and go away?

  20. Socrates November 6, 2008 at 20:25 #

    It appears so.

  21. Socrates November 6, 2008 at 20:26 #

    but while we’re on the subject:

    “[the]’autism’ label can be applied to large number o cases in any
    neurologically impaired population, as well as people who are
    perfectly normal but do not fit into the definition of
    normality”

    This is typical of the diagnostic attitude in the UK:

    • Not everyone on the autism spectrum needs a diagnosis –
    this should be reserved for those who need it to access help

    “perfectly normal but do not fit into the
    definition of normality”

    Please supply your definition of “perfectly normal” and “normal”.

    Some thing else:

    All this started 40
    years ago with Donald T., now a 45-year-old
    bank clerk, whose townspeople know him to
    be the first reported specimen of what many
    of my colleagues call ‘the Kanner
    Syndrome.’

    Doesn’t sound very Low Functioning Autism to me..

  22. Joseph November 6, 2008 at 23:40 #

    The more interesting part of the paper RAJ cites (Kanner, 1965) is this one:

    Questions have arisen, however, with regard to the ease with which the diagnosis was suddenly bestowed upon a relatively vast contingent of patients. Bender, who in 1942 had, as she said, “not seen very many cases in which we could make a definite diagnosis,” announced later that by 1951 “over 600” schizophrenic children had been studied in one single psychiatric unit, that of the Bellevue Hospital in New York. By 1954, she had as many as 850 cases on her list, which means an addition of about 250 in the short span of three years. It is highly improbable that all of them would be acknowledged as being schizophrenic by many other experienced child psychiatrists, and yet it cannot be denied that Bender has made careful investigations and has conscientiously adhered to her established criteria.

    Prophetic, isn’t it? And then Kanner goes on to state the same thing I stated above in response to Swartz.

    Out of this emerges a rather disturbing dilemma. We seem to have reached a point where a clinician, after the full study of a given child, can say honestly: He is schizophrenic because in my scheme I must call him so. Another clinician, equally honest, can say: He is not schizophrenic because according to my scheme I cannot call him so. This is not a reflection on anyone in particular. The whole concept has obviously become a matter of semantics.

  23. Sullivan November 6, 2008 at 23:44 #

    RAJ makes a few mistakes in the above comments.

    First, he mistakes the diagnostic criteria for the definition of autism. It happens a lot–take the Hannah Poling case discussions as a big example.

    Autism is not defined as a constellation of symptoms. Neither is it defined as meeting the diagnostic criteria. It is defined as a developmental disorder. That is why the Romanian orphans he brings up so often are not autistic.

    A point he misses is that the Romanian Orphan example is actually counter to his thesis: The Romanian Orphans would have been diagnosed as autistic by RAJ’s version of the definition/DSM-III:

    In 1980 DSM-III introduce Kanner’s definitin as part of the diagnostic criteria for ‘autism, ‘A pervasive lack of responsiveness to other people’.

    They would have met that simple definition.

    The defintion, by the way, is incomplete

    DSM III (1980)
    Diagnostic criteria for Infantile Autism
    A. Onset before 30 months of age
    B. Pervasive lack of responsiveness to other people (autism)
    C. Gross deficits in language development
    D. If speech is present, peculiar speech patterns such as immediate and delayed echolalia, metaphorical language, pronominal reversal.
    E. Bizarre responses to various aspects of the environment, e.g., resistance to change, peculiar interest in or attachments to animate or inanimate objects.
    F. Absence of delusions, hallucinations, loosening of associations, and incoherence as in Schizophrenia.

    Back to RAJ:

    After all, the Romanian orphans met full diagnostic criteria for autism using Gold Standard diagnostic tools:

    Well, they met the what you cited as the DSM-III “definition” as well.

    What they didn’t meet was the critical criterion that they have a developmental disorder. That is independent of DSM-III or -IV.

  24. Socrates November 7, 2008 at 00:30 #

    Some of the children in Kanners original study wouldn’t even have made the grade as autistic by the DSM III criteria

    “Eight of the eleven children acquired the ability to speak either at the usual age or after some delay” – Kanner,L Autistic Disturbances of Affective Contact.

    Some of the non-speech delayed children would’ve almost certainly been diagnosed as having Asperger Syndrome by the DSM IV criteria.

    I’ll post a copy of Kanner’s original paper on my blog in a few days, so RAJ can have a good read.

    I’ll also post Asperger’s 1944 paper for comparison.

  25. Joseph November 7, 2008 at 02:08 #

    I have to disagree with Sullivan that the Romanian orphans should not be considered autistic. Even if there really is a requirement that the syndrome must be developmental for the syndrome to be called autism (I wasn’t aware there was such a requirement), how do you tell if someone has a developmental syndrome or not? And why don’t Romanian orphans have a developmental syndrome?

    I also have to disagree with Socrates that “some of [Kanner’s] non-speech delayed children would’ve almost certainly been diagnosed as having Asperger Syndrome by the DSM IV criteria.” Technically, it’s quite possible that no one should be diagnosed with DSM-IV Asperger’s (Mayes et al., 2001). In fact, Asperger’s is a relatively rare diagnosis.

  26. Joseph November 7, 2008 at 02:09 #

    I should’ve said Aspserger’s is a relatively rare diagnosis in children. When autistic adults are diagnosed, that seems to be the diagnosis of choice, regardless of early development.

  27. Sullivan November 7, 2008 at 02:26 #

    Joseph,

    I think that should the orphans improve to the point that they don’t fit the diagnostic criteria, and you can point to their early infancy/childhood as a likely cause of their symptoms, it is a good indication that they did not have a developmental disorder.

    But, the autism-spectrum disorders are “Pervasive Developmental Disorders”.

    That is why a person who has autistic “features” after an injury at, say, 10 years old is not “autistic”. The cause was not developmental.

  28. Joseph November 7, 2008 at 02:57 #

    I think that should the orphans improve to the point that they don’t fit the diagnostic criteria, and you can point to their early infancy/childhood as a likely cause of their symptoms, it is a good indication that they did not have a developmental disorder.

    What about the 10-20% of children diagnosed at age 2 who lose their label by age 7 or 9? Would it be correct to say that they were all developmentally “normal”?

    What about most of children with Soto’s syndrome, who tend to catch up with their peers by the age of 10, but not always?

    What if an orphan does not completely move off the spectrum?

    I think it’s complicated to try to differentiate sub-syndromes like that.

  29. Sullivan November 7, 2008 at 03:19 #

    It is very difficult to differentiate, I agree.

    The definition of what is “autism” is quite complicated, in my opinion.

    But, let’s say a person who suffers an injury has autistic “features”. If the person has this happen at age 10, it isn’t autism. If the same injury happens at age 2, is it autism?

    By the same token, should a child regress at age 4–as some down syndrom children have been documented to do–why should that person be excluded from a diagnosis?

    Very very complicated. I don’t profess to have the answers, but instead I think that people need to start looking closer at the questions.

  30. Schwartz November 7, 2008 at 03:59 #

    Sullivan,

    You yet again conveniently take the quote out of the full context. How come you avoid the actual part where she talks about Childhood Schizophrenia?

    And when people say they don’t remember seeing so many autistic children when they were growing up, or ask where all the adults with autism are, there are two possible explanations, Dr. Minshew said.

    One is that many autistic children in the past were never sent to school. In what she called the “Forrest Gump era, you didn’t even go to school, or you went to a totally separate school.”

    The other phenomenon was that some autistic children were labeled as schizophrenic, and many may have ended up in state hospitals or other institutions, she said.

    As repeated before — since you still want to quote all around her actual statement — she states quite definitively that her opinion is that only two explanations are applicable, one of them being childhood Schizophrenia. She’s therefore clearly implying that a number of Childhood schizophrenia cases were misdiagnosed and that number has to account for up to significant portion of the current prevalence of 1/66 boys. (i.e. if she implied that “some” means 1/40,000 than that would imply every case of childhood schizophrenia was misdiagnosed. A number lower than that makes it pretty irrelevant) Any way you look at it, the evidence isn’t there. There are far better explanations outside the two that she outlines.

    Which brings on a similar question: you are using a prevalence number that is clearly in disagreement with the number cited by the CDC. Yet, you seem to have problems withe the idea that prevalence numbers can be inaccurate. Odd argument, if you ask me.

    As for the 1/66 boys prevalence, that is actually slightly lower than the CDC published prevalence for New Jersey (1/60), but you can feel free to adjust the number to which ever CDC number makes you feel better because it doesn’t change the argument at all.

    You also have a memory or comprehension problem as well. I have consistently argued that prevalence numbers, especially historic ones are notoriously poor and unreliable, and that the measurement and investigation is embarrassingly poor on the part of the CDC.

    I’m using the “current” CDC prevalence because Dr. Minshew is trying to claim that the current prevalence has been consistent for a long time. Like I said, if you want to adjust it to a different recent published number, it doesn’t change the argument at all. 1/40,000 is several orders of magnitude from any recently published prevalence numbers. I didn’t think Dr. Minshew was trying to imply that the prevalence today is a lot lower, nearer the range of 1/40,000.

    P.s. what are people going to do in the future to claim an “epidemic”? Being impatient, everyone is jumping the gun to claim higher and higher prevalences for autism, using special education numbers or just plain made up numbers. What happens when the CDC comes out with a study saying he prevalence in the US is 1 in 125 and everyone has already been pushing 1 in 66 or some other number?

    A prevalence can be consistently high and still be “unexpected” in which case, it will continue to be considered an epidemic.

  31. Sullivan November 7, 2008 at 07:46 #

    Schwartz,

    why do you do this on a forum where people (a) know the real answers and (b) check the answers and (c) correct your mistakes

    example

    As for the 1/66 boys prevalence, that is actually slightly lower than the CDC published prevalence for New Jersey (1/60), but you can feel free to adjust the number to which ever CDC number makes you feel better because it doesn’t change the argument at all.

    Are you stating that this is the real prevalence? If so, do you then admit that the prevalence numbers for the rest are grossly underestimated? For example, the numbers for Alabama and for Hispanics in Wisconsin?

    if they are incorrect now, and they go up, does that mean that there is an epidemic in those groups, or does that mean that there is better recognition and identification?

    Or, do you propose that there is a real, secular difference between these areas? If so, why aren’t you calling for a study of Hispanics in Wisconsin, since they are nearly immune to getting autism?

    I love your intro–accusing others of cherry picking statements. Have you no mirror?

    There’s a new post up that answers some of your questions about other subjects. Perhaps we can watch to see how you cherry pick information out of that paper.

  32. RAJ November 7, 2008 at 15:30 #

    Sullivan:
    “Autism is not defined as a constellation of symptoms. Neither is it defined as meeting the diagnostic criteria. It is defined as a developmental disorder. That is why the Romanian orphans he brings up so often are not autistic”.

    Sullivan:

    The Romanian orphans were diagnosed using universally acepted Gold Standard tools such as ADI, ADOS, AUTI-R. All of these tools are based on DSM-IV and ICD-10 diagnostic criteria.

    You can’t have it both ways, arguing on the one hand that these orphans were not autistic despite meeting all universally accepted diagnostic criteria for making the diagnosis. I understand how difficult it is for the believers in an Autism Spectrum Condition that severe early emotional deprivation can ’cause’ autism, but in the case of the Romanian orphans, it can…. If you accept uncritically the perception that autism is a continuum ranging from profoundly handicapped to normal then you have to accept the nonsense the emotional deprivation in infancy is one of the causes of autism (see, refrigerator mother). I don’t, Kanner has already explained the first autism epidemic and his explanation explains the current epidemic, misdiagnosis and lumping all neurologically impaired people and even mormal people who are more reserved than outgoing under the single umbrella of ‘Autism Spectrum Conditions’. Like in the 1950’s autism has become a fashionable label applied indiscriminately to conditions which have nothing in common.

    Since you apparently are one of the believers in an ‘Autism Spectrum Continuum”, explain why severe emotional deprivation cannot cause ‘Autism’?.

  33. Joseph November 7, 2008 at 16:27 #

    @RAJ: How would you define autism so it’s not a “continuum”? Is it possible to define it in such a way that all autistics are identical in their skills?

    That’s silly. Every autistic person will be different to every other autistic person, no matter how narrow or wide you make the definition.

    And what would be the pragmatic reason for narrowing the definition this way?

    If you think the current definition sucks, perhaps what you’re interested in is having input in the DSM-V. It’s a tall order, though. If you think some people should not be diagnosed with anything, you should be able to demonstrate these people would be better off not being diagnosed. If you think certain characteristics (e.g. mental retardation) should be required for a diagnosis, then the construct is subsumed by existing constructs, and is therefore useless.

    No one person can dictate what autism is or shouldn’t be. It’s basically a consensus construct whose understanding is losely based on research and the personal experience of clinicians, starting with Kanner and Asperger.

    It’s not something that can be mapped to something that exists in nature in a straightforward manner. I realize people would like it to be this way, but it just isn’t.

  34. Socrates November 7, 2008 at 16:48 #

    RAJ, you appear to be talking unsubstantiated crap.

    As I quoted before: Currently accepted UK diagnostic practice:

    • Not everyone on the autism spectrum needs a diagnosis – this should be reserved for those who need it to access help

    Have you ever been involved with the diagnosis of ASC’s? Have you even talked to any recognised practitioners?

    RAJ Said:

    Like in the 1950’s autism has become a fashionable label applied indiscriminately to conditions which have nothing in common.

    Please tell us more about these conditions. Explain their aetiology and tell us how practitioners in the UK are massively mis-diagnosing ASC’s.

    Why aren’t these mis-diagnosed people showing up in the microscopic social, psychological and neurological examinations conducted by academic groups like those at the Autism Research Centre in Cambridge?

    And anyway, Kanner work isn’t the be-all and end-all of autism.

  35. Socrates November 7, 2008 at 16:48 #

    RAJ, you appear to be talking unsubstantiated crap.

    As I quoted before: Currently accepted UK diagnostic practice:

    • Not everyone on the autism spectrum needs a diagnosis – this should be reserved for those who need it to access help

    Have you ever been involved with the diagnosis of ASC’s? Have you even talked to any recognised practitioners?

    RAJ Said:

    Like in the 1950’s autism has become a fashionable label applied indiscriminately to conditions which have nothing in common.

    Please tell us more about these conditions. Explain their aetiology and tell us how practitioners in the UK are massively mis-diagnosing ASC’s.

    Why aren’t these mis-diagnosed people showing up in the microscopic social, psychological and neurological examinations conducted by academic groups like those at the Autism Research Centre in Cambridge?

    And anyway, Kanner work isn’t the be-all and end-all of autism.

    2

  36. RAJ November 7, 2008 at 23:42 #

    Sullivan wrote:
    “Autism is not defined as a constellation of symptoms. Neither is it defined as meeting the diagnostic criteria. It is defined as a developmental disorder. That is why the Romanian orphans he brings up so often are not autistic”.

    Sullivan, you must have your own unique definition, because every diagnostic scheme currently in use (DSM-IV, ICD-10, ADOS, ARI-R, AUTI-R) are ALL based on a constellation of symptoms:

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

    DSM-IV list 12 isolated symptoms in three areas. None of the twelve items are specific to ‘Autism’. Any patient who meets enough of these isolated symptoms qualifies for an ASD diagnosis, and even remarkebly, impairment in social reciprocity is not required to qualify for an ASD diagnosis. If your diagnostic scheme tells you that the patient qualifies for the diagnosis, then you must diagnose the patient with an ASD. The Romanian orphans who experienced severe emotional deprivation after being sent to orphanges at birth, meet the criteria set forth in all the currently accepted criteria and therefore are ‘Autistic’.

    Kanner was absolutly correct in explaining the autism epidemic in the 1950’s and it applied to the misdiagnosing of ‘autism’ on a global scale.

    You need to look at the diagnostic criteria an explain why autism is not associated with severe emotional deprivation in infancy.

    The correct answer is that they are not,it is the diagnostic criteria currently in use that has thrown such a wide net that they catching all the wrong sort of fish.

  37. Joseph November 8, 2008 at 01:26 #

    Kanner didn’t say autism was being misdiagnosed on a global scale. His complaint was that his criteria was not being adhered to, which is a little different. I think he was referring to the criteria from Kanner & Eisenberg (1957). Of course, these days no one would think this criteria from 1957 is superior criteria to any of the criteria that came later, including DSM-IV and so on.

    If you think the old criteria is superior, what is the reason to believe so?

    I would note that the old criteria didn’t disallow a spectrum. It was still very subjective in the way it could be interpreted. Lorna Wing is probably the first researcher to think of autism in terms of a spectrum, and this was happening in the late 1970s.

    It’s not that difficult to demonstrate that Kanner’s autistic patients did not meet Kanner’s own criteria for autism. It was not a consistent or perfect definition by any means.

    Take, for example, Alfred N. (case 8), a child with an IQ of 140. Autistic or not?

  38. Socrates November 8, 2008 at 01:51 #

    Well, that’s not going to get him anything other than a 299.8 in the UK.

    Perhaps RAJ should read some of the case studies from Milton Park Hospital, to see just how profoundly disabled you can be and still get an Asperger’s diagnosis in the UK.

  39. Schwartz November 8, 2008 at 02:34 #

    Sullivan,

    You continue your mistaken habit of applying arguments to me that I’m not making, probably to distract from the key points.

    I’m not stuck with the prevalence numbers as I’ve clearly stated numerous times. Choose whichever published number you wish, it still does not change the problems with Dr. Minshew’s statements.

    Of course arguing about bad prevalence numbers is easy to do, and an easy distraction.

    I love your intro—accusing others of cherry picking statements. Have you no mirror?

    I assume since you keep changing the topic, you clearly can’t defend your quote cherry picking, I guess I’ve hit the mark. As for trying to accuse me of the same, feel free to point out where I misquoted anyone. I’ve clearly pointed out that picking a lower prevalance number from a different state doesn’t change the argument at all.

    There is nothing to cherrypick.

    Are you stating that this is the real prevalence? If so, do you then admit that the prevalence numbers for the rest are grossly underestimated? For example, the numbers for Alabama and for Hispanics in Wisconsin?

    I think you continue to misunderstand. I’m not defending the prevlance numbers. Why would I do that when I’ve commented quite publically I think they’re inaccurate. The point of my argument doesn’t rely on the exact number, only the fact that any number being used is orders of magnitude away from supporting Dr. Minshew’s statements.

    Unless of course, you’re trying to argue that the Autism Prevlance is several orders of magnitude overestimated? I would love to hear that argument.

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