2 Hypotheses: Autism Epidemic and Diagnostic Substitution

To what extent has the prevalence rate of autism increased because of the “better diagnosis” argument—-that we are able to better diagnose and identify autism today than in the past? Is what some call an “epidemic of autism” more accurately described as a sort of “epidemic of understanding and awareness” about autism?

A new study in the Developmental Medicine and Child Neurology by Dorothy Bishop, et al., has found that some adults who received a diagnosis of language disorder during childhood might now have been diagnosed with autism. 38 adults (age 15 to 31) were included in the study, whose findings Translating Autism by Nestor L. Lopez-Duran, Ph.D., cogently summarizes:

The authors were mostly interested in a particular type of language disorder diagnosis called pragmatic language impairment (PLI), since this disorder has many similarities with autism. The authors conducted full ADOS and ADI evaluations of these individuals. They found that 55% of the participants with PLI met the criteria of autism as indicated by the ADOS or the ADI, and 40% met the criteria of autism as indicated by both, the ADOS and the ADI.

These findings are consistent with the diagnostic substitution of autism. The implication is that a significant percentage of people who were diagnosed with PLI in the past would now receive a diagnosis of autism instead. Likely this substitution is not sufficient to explain, in its entirety, the dramatic increase in autism diagnoses; but it is reasonable to conclude that such substitution could partially explain such increase. In addition, the PLI substitution is just one of several proposed substitutions (see for example MR as described here). Finally, it could be argued that these individuals received the correct diagnosis of PLI as children and developed autism symptoms as adults. Although this is a plausible explanation, it is not consistent with what we know of the developmental progression of autism symptoms.

Professor Dorothy Bishop is quoted in a press release, which notes that the “two main hypotheses” to explain the rise in the autism rate are the “autism epidemic” hypothesis and the “diagnostic substitution” hypothesis.

“Our study shows pretty direct evidence to support the theory that changes in diagnosis may contribute towards the rise in autism,” says Professor Bishop. “These were children that people were saying were not autistic in the 1980s, but when we talk to their parents now about what they were like as children, it’s clear that they would be classified as autistic now.

“Criteria for diagnosing autism were much more stringent in the 1980s than nowadays and a child wouldn’t be classed as autistic unless he or she was very severe. Now, children are being identified who have more subtle characteristics and who could in the past easily have been missed.”

However, Professor Bishop cautions against using the results to suggest that the prevalence of autism is not genuinely rising.

“We can’t say that genuine cases of autism are not on the increase as the numbers in our study are very small,” she says. “However, this is the only study to date where direct evidence has been found of people who would have had a different diagnosis today than they were given fifteen or twenty years ago.”

Another way to think about the “autism epidemic” and “diagnostic substitution” hypotheses is this: Is the increase in the number of autism diagnoses (especially in children) due to some external factor or agent; to, for instance, something in the environment—-in the physical world—that has changed? Or, is the increase due to a kind of internal change in us, in how we think about and understand and perceive the world? Psychology is a relatively recent innovation: The ancient Greeks and Romans who I teach were certainly interested in how we humans think and what happens to our souls (the Greek word for soul is psyche) and whether we have one. What would we call “autism” in a time and a world without psychology? (And can you imagine such a perspective?)

Share This Post:
    • http://www.homeschoolnetc.blogspot.com Mrs. C

      I also have to wonder if people are looking for autism in the siblings and expecting it more than they would in the general population. Hard to know whether a diagnosis would be given to a child if the child didn’t have a sib on the spectrum, I think sometimes.

    • Laura

      I personally believe that the rise in Asperger’s or HFA is due to internal changes in us. It’s not just that we are more open minded, but the general public as parents have been trained as to what’s “typical” and what isn’t. And the stigma of a having a child that isn’t behaving like other children has been taken away for the majority. Instead of hiding any disability or delay in shame, we’re asking questions, seeking answers, getting help.

      I heard recently that the 1 in 150 statistic was more about kids with Asperger’s than with classic autism…that the % of classic autism cases hasn’t increased at all, only the number of kids diagnosed with Asperger’s or HFA because of internal changes in us and the information world we live in now.

    • H6

      It isn’t going to be easy to sell the notion that there’s no new epidemic of autism or a real increase. Basically what you’re saying to parents is “What are you going to believe, our deconstruction of autism or your lying eyes?”

      Even if you’re right, you’ve got a long road ahead of you.

      And if you’re wrong and work on understanding this problem (and funding it) is slowed down by convincing people that the increase in autism is a delusion, well, that would be a great tragedy for everyone.

    • http://kaisautism.blogspot.com/ xtiluv

      I am absolutely positive that at least some of the increase in ASD is diagnostic. I have at least two family members who would have been diagnosed as ASD if they were children today.

      My cousin, who fits the profile of Asperger’s, had his kindergarten teacher suggest that he was MR. He has since gone on to be valedictorian of his high school, a national debate champion in college and is currently practicing law.

      I am also convinced that my aunt would have been diagnosed with autism in this day and age. I did not learn this until after Kai received his diagnosis, but she did not speak until she was four and would prefer to play alone in her playpen, crying and rocking if another baby were placed in there with her. She was always a loner, eccentric, and such a fabulous artist even as a small child that nobody would believe that she could possible create her artwork. As a side note, she was obsessive about horses, and when drawing them she would draw the tail and hind legs, then switch to the head of the horse and fill in the rest…just a small indication of the different way her brain perceives the world. Currently, she lives alone in the desert, making a living through her art, and is unable to even have a handyman come help her with projects due to her discomfort with social interaction, so she has learned to do all the maintenance of her home, including rewiring the electrical system and other projects that I would have called a professional for.

      My husband also has a family member who probably falls on the spectrum.

      Yet another argument for genetics. And that ASD diagnosis in the past was not a comprehensive as it is today.

    • Regan

      Here’s the deal for me.
      I think that children have specific learning or behavioral issues that are addressed best specifically. If you look at those, it is somewhat irrelevant what the particular category name is.
      Call it “Trouble with receptive and expressive language and fine motor delays” Syndrome or “Trouble adjusting to environmental changes and does not like loud noises” Syndrome, etc.

      We have created (and it is a human-defined category) the diagnosis of “autism” and it is subject to being defined as whatever is stated at a given time. It seems to be broader than in the past with possibility depending on committee to broaden or narrow in the future.
      The single name implies common etiology, common characteristics and common or even single approach, and that even observationally from a lay point of view seems unreasonable and inaccurate.
      If parsing it into PLI or Semantic-Pragmatic disorder or whatever gives more specific definition relative to a particular person for the purposes of educational intervention or understanding potential trajectories, I err on the side of specificity and arguments of categorization be darned. However if they do change the DSM again, please note a phase change line in the prevalence count.

      My understanding is that much of the current increase in ASD/PDD is due to diagnosis of PDD-NOS.

    • http://aoskoli.blogspot.com/ VAB

      It is of note that the PLI diagnosis does not exist in North America (or anywhere outside the UK as far as I know) and that most professionals consider PLI as a sub-category of autism anyway.

      Kristina, I think what you said in the second half is on the money. It’s not just diagnostic substitution, it’s diagnosis period. What we expect of kids are grossly narrowed over the past 20 years. On the upside, the sort of supports that we can offer kids who develop differently from their peers has massively increased.

      I’m convinced that, not too far down the road, the word autism will fall out of fashion, just as hysteria did many years ago. It’s just too broad and blunt.

      All that said, there is no reason to think that there is not also a real rise in the number of kids of the spectrum.

    • Chuck

      Actually there are 3 Hypotheses:

      1) Autism Epidemic
      2) Diagnostic Substitution
      3) Autism Epidemic and Diagnostic Substitution

    • http://www.autismvox.com Kristina Chew, PhD

      Whether or not there is a real increase, there are definitely more and better efforts to help children and adults currently identified/diagnosed as “autistic.”

      I shudder to think what “options” might have been available for my son 100, 50, 30, even 10 years ago. The kind of education he receives—-the use of something like a Language Master to assist him in talking—-these kinds of things were not previously available.

      The numbers are? have been? out there and now we’re able to count them—-that might be another way to consider this issue. I’m glad we are—-I’m not convinced that Charlie would have had an autism diagnosis in previous years. I think he might have been given MR and emotional/behavioral disorder. I don’t know if he would have learned to talk (or ride a bike, or be taken every weekend into New York on trains and subways and visit all kinds of places, or play the cello and piano). I wonder if he might have spent his life in an institution, and give lots of medication, and been violent and self-injurious. I’m just grateful we now understand what we can do for kids like Charlie, and that we understand that he can learn.

    • http://autismnaturalvariation.blogspot.com Joseph

      Basically what you’re saying to parents is “What are you going to believe, our deconstruction of autism or your lying eyes?”

      Why? That didn’t make any sense to me.

      Either way, this is not the first such study. Shah et al. (1982) found that 38% of the adult patients at a mental handicap hospital met criteria for what we would most likely call ASD today. Note the year on that. More recently, Matson et al. (2007) found that 50% of adults of a group of intellectually disabled adults met criteria for autism or PDD-NOS.

      Every time they screen various populations for ASD, the evidence keeps mounting in this direction. What is there to counter? “Lying eyes” types of arguments? Yeah, that’s convincing.

    • Caroline L.

      and not everything is neccessarily autism…or that a child who does not talk, regardless of psychological diagnosis, is intellectually disabled.

    • H6

      So is the consensus here that autism is not a problem that is increasing and that the incidence of autism (by any name) has been constant throughout time?

      Am I right to guess that it is a minority opinion among parents of autistic children?

      The people who think vaccines are the cause are now being heavily mocked. Does the same fate await those who think there is an increase and an actual epidemic?

      Does the recognition of an epidemic (or lack thereof) depend upon the politics of diagnosis?

    • http://laurentius-rex.blogspot.com laurentius-rex

      Dorothy Bishop is one of the few researchers who make sence (in other words who confirms my hypotheses :) … )

      ‘er is just being cautious in some pronouncements about what we can and cannot know. Autism is increasing of course, cos there are more people available to be diagnosed :)

      Well it’s not Kansas is it, the explanation for the abscence of diagnoses in the past is the limited numbers of people who either knew of. or were competent to make a diagnosis.

      Posit this, tommorrow, Laurentius Rex discovers a new “disorder” how long will it take before it is diagnosed in significant numbers. You can look at any medical diagnosis and realise that it did not exist before it was identified?

      How many people had von Recklinghausens syndrome before Herr von R came on the scene to name it?

    • Regan

      I don’t know about anyone else, but the incidence of autism seems to be a subject of discussion and study–hence papers such as the above cited and the current counting continuing by the ADDM network.

      There is some speculation based on inversions of some IDEA categories (Laidler, 2005), and changes in the DSMs (as well as past diagnostic tools for infantile autism v. childhood schizophrenia) that some of the comparisons might not reflect the same thing. As Joseph noted there are some retrospective examinations to try and get a handle on what someone might have been diagnosed with in the past given more recent criteria.

      Historically, pre-1975/PL 94-102/IDEA, fewer children of any kind of cognitive or behavioral disability would have been seen and counted because public schools were not required to serve them. Previous to 1990, there was no IDEA autism category, and my understanding is that there was not an IDEA C count of children 3-5.

      Are there more kids around with an autism spectrum diagnosis–anecdotally, I would say yes. Do these kids present identically–no. Are the numbers comparable to past counts–that seems to be in progress.

      I know that there are others who have looked into the epidemiology more closely. These are just some casual observations. I’m not mocking anyone.

    • Regan

      Sorry,
      “my understanding is that there was not an IDEA C count of children 3-5, prior to 2000.”

    • http://autismnaturalvariation.blogspot.com Joseph

      Am I right to guess that it is a minority opinion among parents of autistic children?

      If you have a reasonably valid survey at hand, you might. But I can tell you that it’s a majority opinion, overwhelmingly, among pediatricians.

      Either way, it’s a scientific question, not a popularity contest.

    • H6

      I know it’s not a popularity question, but to a certain extent the opinions of the parents are a factor in the direction public health officials take.

      Whether we like it or not, science, especially science that requires funding, is impacted by culture and society.

      This is not to say it isn’t important and a great tragedy even if it’s just 1 in a million.

      If autism is perceived as a crisis there will be more of a public health response than if it is perceived as an old problem that just hasn’t been addressed correctly.

      Based on the presentation of the problem as an epidemic, one can’t help but wonder whether 1 in 150 could turn into 1 in 50 etc.

      If must be frustrating for those who are convinced it isn’t increasing to think that society won’t be as concerned if it’s not perceived as an epidemic.

      There may be those who wish it would get less attention because it is scaring people.

    • http://www.translatingautism.com Translating Autism

      Thanks for the review of my post Kristina. I also tend to disagree with the idea that there are 2 main competing hypotheses that are incompatible. It is reasonable to think that changes in diagnostic practices have resulted in changes in diagnostic rates. Medicine and psychiatry are full of similar examples, and this is expected, necessary, and very much appreciated, as we learn more about the nature of these conditions. However, it is also completely reasonable to hypothesize that, given the apparent increases in autism diagnoses, a true increase in autism rates has occurred during the last 20 years for reasons we do not yet understand. And then, it is even more reasonable to conclude that the truth is probably somewhere in between. But at the end this is an empirical question and the data that would allow us to reach a conclusion are not yet available.

      “Either way, it’s a scientific question, not a popularity contest.”

      Cheers, Nestor.

    • http://www.autismvox.com Kristina Chew, PhD

      I don’t think the hypotheses are incompatible but do think we need to be very alert to how terms are being defined, and how and what is being counted.

      May your last line—

      “Either way, it’s a scientific question, not a popularity contest.”

      give many food for thought! Very best.

    • http://autismnaturalvariation.blogspot.com Joseph

      If must be frustrating for those who are convinced it isn’t increasing to think that society won’t be as concerned if it’s not perceived as an epidemic.

      You said previously that if there is really an epidemic but the scientific concensus is that there isn’t, that could be a tragedy. Well, science shouldn’t assume things about reality based on what the politics say (although, clearly, research funds do depend on politics). But the argument can be flipped. If there’s no epidemic, but there’s promotion of a false epidemic, that is a tragedy as well. A generation of autistic kids, a majority of whom do have a label of autism these days, will be thought of as being part of a scary tsunami of flapping kids who are about to destroy civilization if nothing is done about it.

    • http://autiegraph.blogspot.com Melody

      Besides, I don’t think the word “epidemic” needs to keep in circulation to get funding for services and reasearch – Why not just state that kids with autism spectrum diagnoses are increasing in numbers and so will need educational attention? With the diagnoses, regardless of whether it’s more than in the past (which the diagnoses are certainly more prevalent, even if incidence isn’t), then you can’t ignore the population, and if funding is cut for us, then that looks bad (because it is).

      My dad is among those who would most likely have been diagnosed, though by now at middle-age he probably has adapted enough to have “lost” the diagnosis – perhaps another reason why childhood diagnoses are more prevalent than adult ones (aside from other reasons like other diagnoses, and changes in criteria, awareness, etc.), because of those who have managed to squeak by before Asperger’s made it into the DSM, some would no longer qualify since the diagnosis depends on having difficulties related to the traits. I don’t think the truth of this matter will be fully understood until several generations grow up with the criteria and awareness we have today, as to retroactively diagnose every single person who is autistic and would have been diagnosed as a child would take a lot of effort, and be pointless for everybody who doesn’t need a diagnosis for access to services or some such.

    • RAJ

      The diagnostic criteria for ‘autism’ has been redefined over the course of publications of editions of the APA’s DSM:

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

      DSM III (1980) Requires a “Pervasive lack of responsiveness to other people (autism)”. This is Kanners definition. Children treated parents like sticks of furniture, if mother or father left for a few hours or even a few months, upon returning the child would act as if the parent had never left and was never missed.

      DSM-III-R (1987). This edition relegated Kanner’s definition to one of five items of which two had met, not including Kanner’s definition.

      DSM-IV (1987). This is when the so-called autism epidemic began. Kanners definition was dropped entirely replaced by the ambigous and subjective ‘Qualitative impairment in social reciprocity”.

      With the removal of Kanner’s definition, autism has become an umbrella diagnostic label for a myriad of unrelated neurological conditions.

      Kanner noted in 1965 that the core defining feature of autism is a pervasive lack of awareness of the existence of others. He also wrote that all the other symptoms were isolated feature parts of the overall syndrome of autism. Isolated symptoms that are not specific to autism.

      We have now diagnostic criteria that has removed the original definition of autism. This would explain why so many diverse and unrelated conditions ranging from mentally retarded Fragile X boys to Romanian orphans placed in Orphanages of the worst kind and suffered severe emotional neglect were adopted into well-functioning English families yet met criteria for an ASD.

      Others have questioned whether an Autism Spectrum actually exists, noting that PDD/NOS is only defined by what it is not – autism. Still others have noted that the criteria for Asperger’s Syndrome is interchangeable with the diagnostic criteria for Schizoid Personality Disorder with SPD being on the schizophrenia spectrum.

    • http://www.marlabaltes.blogspot.com Marla

      All very interesting. The comments as well. I think it is many things but parents being more educated and more access to information has to make for a difference.

    • http://mayfly mayfly

      There have been other studies on diagnostic substitution

      Journal of Autism and Developmental Disorders

      Published online: 2 November 2007

      Helen Coo, Hélène Ouellette-Kuntz, Jennifer E. V. Lloyd, Liza Kasmara, Jeanette J. A. Holden and M. E. Suzanne Lewis

      Trends in Autism Prevalence:
      Diagnostic Substitution Revisited

      Abstract There has been little evidence to support the hypothesis that diagnostic substitution may contribute to increases in the administrative prevalence of autism. We examined trends in assignment of special education codes to British Columbia (BC) school children who had an autism code in at least 1 year between 1996 and 2004, inclusive. The proportion of children with an autism code increased from 12.3/10,000 in 1996 to 43.1/10,000 in 2004; 51.9% of this increase was attributable to children switching from another special education classification to autism (16.0/10,000). Taking into account the reverse situation (children with an autism code switching to another special education category (5.9/10.000)), diagnostic substitution accounted for at least one-third of the increase in autism prevalence over the study period.
      ————–
      Volume 32 # 3
      The Changing Prevalence of Autism in California
      Lisa A. Croen, Judith K. Grether and Steve Selvin
      Abstract We conducted a population-based study of eight successive California births cohorts to examine the degree to which improvements in detection and changes in diagnosis contribute to the observed increase in autism prevalence. Children born in 1987-1994 who had autism were identified from the statewide agency responsible for coordinating services for individuals with developmental disabilities. To evaluate the role of diagnostic substitution, trends in prevalence of mental retardation without autism were also investigated. A total of 5038 children with full syndrome autism were identified from 4,590,333 California births, a prevalence of 11.0 per 10,000. During the study period, prevalence increased from 5.8 to 14.9 per 10,000, for an absolute change of 9.1 per 10,000. The pattern of increase was not influenced by maternal age, race/ethnicity, education, child gender, or plurality. During the same period, the prevalence of mental retardation without autism decreased from 28.8 to 19.5 per 10,000, for an absolute change of 9.3 per 10,000. These data suggest that improvements in detection and changes in diagnosis account for the observed increase in autism; whether there has also been a true increase in incidence is not known.
      ————-
      Most of the change is from MR to autism. Is this change primarily because the criteria are more inclusive or because the criteria are better known.

    • Marcie

      I actually know someone whose child was diagnosed with “semantic-pragmatic speach disorder”. At age ten, he was rediagnosed with autism. As for me, I didn’t even warrent a speach label. My mother dealt with my sensory issues, ignored the horrible problems I had with other kid’s in school, and didn’t believe me when I told her about Asperger’s.

    • Jill

      I wish they would break down that stat of 1 in 150 of children diagnosed with autism to the specific categories – aspergers, PDD=NOS and full blown autism. IAN published some data results in which 50 percent of the children diagnosed has full blown autism. Unfortunately, it is not scientific since the people that participated have access to the internet and it could be that parents with children with severe autism are more motivated to participate in that study. Are there any numbers on the percentage of each category? That may help in finding out if there is an epidemic. What worries me more is the number of children that will need care, housing and not be fully independent when they become adults. Is that number rising?

    • http://autismnaturalvariation.blogspot.com Joseph

      Are there any numbers on the percentage of each category? That may help in finding out if there is an epidemic.

      Unfortunately, I don’t believe it does, because the understanding of each sub-category changes as well. It’s very subjective, and studies won’t agree with one another on this.

      I’ve suggested that one study that would be worthwhile doing is to attempt to replicate Lotter (1967).

    • Chuck

      Unfortunately, I don’t believe it does, because the understanding of each sub-category changes as well. It’s very subjective, and studies won’t agree with one another on this.

      and yet studies on causation are valid and fully accepted

    • http://laurentius-rex.blogspot.com laurentius-rex

      I have little belief in Californian statistics to begin with and there ability to prove anything, gerrymandered and finagled as diagnosis is, when it is not governed by pure medicine but sullied by what services go with which lable.

      The other thing is that I don’t know of any other branch of medicine or science where the originator of a concept is given more weight than later researchers, it’s like the middle ages never ended and Galen is still the authority.

      Kanner was wrong in so many things, how could he have been otherwise, because he simply did not know what others have found out since.

      The most fundemental way in which I think he was wrong was his (and others) beliefs that autism represented such a distinct watertight nosological entity. It doesn’t and it has got leakier as time has progressed. Where were SPD’s and Schizoid axes when Kanner was at his height?

      Autism is not distinct it is fuzzy at the edges, that is why genetics won’t solve the puzzle, since autism as we have come to describe it involves the interaction of a great many developmental processes.

      The Mississippi is made up of many streams, they shift and change, as does the river itself, yet it is still the Mississippi and the volume of water that passes into the delta is pretty much constant throughout all that change.

    • Beth

      @ Jill:
      I agree that it would be great if they could break down the 1 in 150 stat to explain which types of autsim we are talking about. However, I believe that these numbers are based on the categories of disability into which people are classified. By the Commonwealth of Massachusetts, my son is classified as “Autistic” based on the CORE evaluation that the DOE has done. He was also diagnosed with ADHD but his official category is “Autism.” He was diagnosed (medically) as having Asperger’s and ADHD. I am sure that, when the CDC looks at the numbers for Massachusetts, he is called Autistic even though he has Asperger’s. I think that this is the problem with the “epidemic” nationwide; there should be a better way to track statistics since the DOE categories are broad and only meant to determine eligibility for services, not determine public health policy.

    • http://mayfly mayfly

      Autism isn’t distinct? Certainly at the margins, but not for people with Kanner’s

    • Chuck

      Even a census of the individuals with Kanner’s would be difficult to do. My son has an educational label of severely disabled and has no professional medical or psychological diagnosis of any ASD.

    • http://hoopdeedoo.blogspot.com MomtoJBG

      I used to believe the diagnostic substitution explanation, but having taught special ed. and now mothering two boys with moderate autism, I believe there is an actual increase.
      My boys are not just quirky–as they have gotten older (now three), they have more of the “stereotypic” behaviors of autism.
      Living in Southeast TX, my personal theory is that we have a genetic predisposition, combined with incredible air pollution, at work in this area.

    • http://mayfly mayfly

      A child with Kanner’s does not suffer anxiety when his parent’s leave the room. There is a lack of bonding. This was one the first clue’s that my daughter’s development was not right.

      There are other clues as well. My daughter when she had language, she progressed as far as making simple demands such as “Want Juice” and knew the names of nearly everything in the house and yard, had no social language at all. No Mama, no Dada, no bye-bye.

      There are lot’s of cognitively disabled children who are still sociable and as such they do not have Kanner’s.

      Kanner may have been wrong about some things, but not in his definition of autism You might as well state that the prime meridian is in the wrong spot.

    • http://laurentius-rex.blogspot.com laurentius-rex

      There’s no teaching some people, if they continue to cherry pick from history.

      The prime meridian is where it is because of Britain’s provenance as a naval power, not an act of God. France wanted it to run through Paris.

      Kanner was not infallible, there was a lot of disagreement at the time, and Rutter in England continued to diagnose Childhood Schizophrenia for Kanner’s Autism both believing that the condition whatever it was, was an infantile one and quantitatively different from anything seen in adults.

      France (as ever not wanting to follow Anglocentric models of anything) continues to believe in the psychoanalytic model.

      Nowhere did Kanner percieve mental retardation as a component of his syndrome, that urban myth came later.

      Besides which Kanner was very biased by the social status of his first clients, believing that it was an upper middle class disorder and looking for clues in that.

    • http://mayfly mayfly

      One does nt have to have MR to have Kanner’s, but a great many do. Just as MR does not necessarily mean you have Kanner’s or any other type of autism, it does not disqualify you either. Those who are low-functioning autistics, i.e having MR, tend to have more severe autism then those who do not.

    • http://laurentius-rex.blogspot.com laurentius-rex

      Right and Wrong Mayflower

      having the combination of MR and Autism does complicate autism but autism can be measured in severity along indices independent of MR

      How funtional that makes on in society depends upon much else, however a high index of MR and low index of Autism might well appear to be the less well adaptive than the opposite of a high index of autistic traits and low index of MR. (if that makes sence)

      In either case what matters is that one is neither looked at as one thing or the other, but that every aspect of ones situation is considered.

      Of course it could be argued by some that (oh no I won’t bother to deliver another lecture, I’ll save it for another time)

      Kanner’s BTW is not a valid term, subtype or definition, grossly inacurate outdated and irrelevant. One could possibly say the same of MR as a blanket term covering a wide spectrum of cognitive difference with very different etiologies and outcomes.

    • http://laurentius-rex.blogspot.com laurentius-rex

      Of course reading accurately was never a strenght of mine, I meant Mayfly not Mayflower, but there you go I blame it on the phonics they used when I was at school ;)

    • Marcie

      >One does nt have to have MR to have Kanner’s, >but a great many do.

      Not according to Kanner. He specifically ruled out cases of possible MR (as well as anything else the children could be classified at the time, such as epileptic). He was also a propentent of non-verbal IQ test to prove the intelligence of his patients. And (this is my personal observation from reading over his work) while many of them had speech delays, the tended to “look Aspie” when slightly older.

    • http://laurentius-rex.blogspot.com laurentius-rex

      Trouble is that it is apples and pears.

      Both Kanner and Asperger, Austrian physicians with a similar heritage and knowlege of Bleuler, Kraepelin, Charcot, Creutzfeld and the other “pioneers” came up with remarkably similar putative syndromes.

      It was only afterward that the nosologies came to accept a much revised version of what Kanner thought he was describing as the paradigm of autism, and only later when Lorna Wing brought it back into touch as it were.

      Kanner effectively lost the nosological war and what people think of as Kanners syndrome is a construct in there own minds of some kind of core autism that excludes people like me who can post intellectual arguments.

      It is as if someone had declared somewhere that disorders like OCD and Depression had a major component of retardation that invalidated anything that anyone with the disorder had to say about there own experience.

      We know that OCD and Depression, whilst incapacitating in there own ways, do not diminish ones intellectual powers, but rather use them up in non purposeful ways (believe me I know)

      Kanner’s memory has become a stick to beat an unpleasant reality amongst those who refuse to recognise what core autism is. It’s not tantrums, it’s not diorhea (however you spell that) and it’s not MR. (even MR is not MR but that is another story)

      Intelligence is a wierd notion, I don’t see a lot of it in blogs I must say.

      There is a difference between scoring well in a test and having the capacity to score well in a test, the latter being dependent upon other factors. I know I have the capacity to score higher in IQ tests than I do, and so do those who have tested me know that, what I have however is an obstinate desire for the right answer that prevents me from giving the socially desired “correct” one. (I am pathologically okkard) That’s a sort of metaphor for autism (yes we can understand what a metaphor is) in that there are neurological brakes that do hold us back from being as exotropic as non autistic people. It’s my narrow focus that keeps me from accepting what others find easier to accept as compromise.

      I’m not a neurologist, but I will wager that my studies have brought me to a greater knowlege thereof cognitive neuroscience than most non educated pundits who just cherry pick the most memetic papers without the background. I could explain in a great more detail why I think the way I do in the way I do, and how that relates to notions of autism and retardation in a more developed hypothesis.

      It just would not do on a blog though. I cannot write a whole paper at a drop of a proverbial hat, I am saving up that interesting stuff as background for my thesis, accepting that the “science” can change in the meantime (probably closer to the direction I am thinking, but we shall see)

    • http://mayfly mayfly

      It makes a huge difference how autism is defined. The populations of autism, not ASD, as defined by CARS and autism as defined by ADI-R are very different.

      I’m curious, Laurentius, what was your diagnosis and on what was it based.

    • Chuck

      Both CARS and ADI-R tests are diagnostic tools subordinate to the DSM-IV. The DSM-IV determines sub categories (PDDNOS-Aspergers). There is no recognized rating other than that and the DSM-IV is also not globally recognized. The ratings of CARS and ADI-R, or lack thereof, make little difference to outcomes or services.

    • Pingback: The Cause of It All

    • http://laurentius-rex.blogspot.com laurentius-rex

      I was diagnosed in 1999 with Asperger’s syndrome and specific learning difficulties, within the national health service. Asperger’s is bog standard for any adult regardless of there childhood, my parents not being alive to give corroboration.

      However it would have been highly unlikely (indeed I doubt if any one was) to be diagnosed with autism in the 1950′s as the concept had not significantly escaped the USA, it was not even in the medical dictionaries. According to my mum I was called hyperkinetic one of those vague lables of the time, like clumsy child syndrome, that were not structured and rigidised in the way diagnoses are today, medical practice was very different in the 50′s as was culture.

      My brother received somewhat more attention, he was investigated for deafness, and initially considered retarded because he could not speak.

      He was lucky though to receive speech therapy and be accepted in the mainstream. He is not interested in a diagnosis, he considers autism to be entirely a social construct, way more sceptical than me, though I think he could pick up an Asperger’s diagnosis any time he wanted to. He is not interested in participating in autism research as my sibling either.

      My diagnosis came after having difficulties finding work and being in the unemployment system. My first psychological assessment was at the behest of the DoE.

      In the sixties when Autism did come to be heard of I certainly recognised some of the symptoms in myself, however can be seen on the web, it was only the more severe manifestations that got attention

      http://www.larry-arnold.info/Neurodiversity/Observer/Observer66.htm

      Yes I kept that article from the 1960′s

    • http://autismnaturalvariation.blogspot.com Joseph

      Autism isn’t distinct? Certainly at the margins, but not for people with Kanner’s

      There’s no subdivision of ASD that isn’t subjectively assessed. What is understood by “Kanner’s” has changed with time just as everything else.

    • http://mayfly mayfly

      Chuck, ADI-R is based on DSM-IV and also meets the ICD-10 Standards.

      Autism Diagnostic Interview-Revised and the Childhood Autism Rating Scale: Convergence and Discrepancy in Diagnosing Autism
      Evald Saemundsen, Páll Magnússon, Jakob Smári and Solveig Sigurdardóttir

      The agreement between the Autism Diagnostic Interview–Revised (ADI-R) and the Childhood Autism Rating Scale (CARS) was investigated in the diagnostic assessment of 54…
      Journal of Autism and Developmental Disorders, Volume 33, Number 3 / June, 2003

      CARS strays from this definition. It. Does not stress social impairment and includes areas not in the DSM-IV/ICD-10 definition.

      ADI-R is a more restrictive standard. Anyone found to have autism itself, not an ASD by ADI-R is found to have autism by CARS. THE above paper compared ADI-R/CARS diagnosed autism vs. CARS only
      autism

      The differences:male to female ratio ADI-R/CARS 3.5:1, CARS only 17:1.

      IQ rating ADI-R/CARS 50% = 70

      CARS only 17% = 70

      In general the ADI-R group will need more help than the CARS group.

    • http://mayfly mayfly

      Laurentius, thank you for answering my query. You have an autism spectrum disorder, which is not the same as autism itself. Undoubted you share many traits with those with autism itself, but you also undoubtedly share many traits with the NT population which most of those with autism lack.

    • http://mayfly mayfly

      Joseph, how has the definition of Kanner’s changed? Again things may be subjective at the margins, but with a great may people their diagnosis is not a marginal one.

    • http://daedalus2u.blogspot.com/ daedalus2u

      The notion of MR and intelligence is highly test specific. Those tests break down and produce results that are quite wrong in some populations.

      http://www.ncbi.nlm.nih.gov/pubmed/17680932

      If you look at figure 3, there are some individuals with 70 percentile points difference in IQ scores as measured by different tests. What a difference of more than 70 percentile points means is scoring below 20th percentile in one test (that is more than 80% of individuals score higher) and 90th percentile on another (that is less than 10% score higher).

      Tests that give such grossly disparate results are highly flawed. Which test is flawed is unknown. It is likely that both are flawed, and that the concept of intelligence itself is too complex to be represented by a single number or a single ranking on a scale.

    • http://autismnaturalvariation.blogspot.com Joseph

      Joseph, how has the definition of Kanner’s changed? Again things may be subjective at the margins, but with a great may people their diagnosis is not a marginal one.

      Check out Kanner (1943). Of course, at that point there was no operationalized definition of autism.

      That came later, with Kanner & Eisenberg (1956). The initial criteria included “a profound lack of affective contact with other people; an anxiously obsessive desire for the preservation of sameness in the child’s routines and environment; a fascination for objects, which are handled with skill in fine motor movements; mutism or a kind of language that does not seem intended for inter-personal communication; good cognitive potential shown in feats of memory or skills on performance tests, especially the Séguin form board. Kanner also emphasized onset from birth or before 30 months.”

      It seems to me that many children we would call obviously or severely autistic today would not fit this criteria.

      Kanner & Eisenberg changed the criteria in the same paper to include these two features they considered essential: “(1) a profound lack of affective contact; (2) repetitive, ritualistic behavior, which must be of an elaborate kind.”

      Clearly, DSM-IV criteria for autistic disorder is nothing of the sort.

    • http://mayfly mayfly

      Thanks Joseph, for the information. “Profound lack of affective contact” seems to be from whence autism was named.

      We define autism by our own experience.

    • http://mayfly mayfly

      Marcie, your right. Kanner argues against his patient being feeble-minded, to use his term. It and his advocacy of non-verbal IQ tests suggests that others did.

    • Regan

      No statement.
      Just thought these were relevant and might be of interest.

      Edelson, M.G., (2006). Are the Majority of Children with Autism Mentally Retarded? A Systematic Evaluation of the Data.
      Focus on Autism and Other Developmental Disabilities, v21 n2 p66-83 Sum 2006

      There are frequent claims in the literature that a majority of children with autism are mentally retarded (MR). The present study examined the evidence used as the basis for these claims, reviewing 215 articles published between 1937 and 2003. Results indicated 74% of the claims came from nonempirical sources, 53% of which never traced back to empirical data. Most empirical evidence for the claims was published 25 to 45 years ago and was often obtained utilizing developmental or adaptive scales rather than measures of intelligence. Furthermore, significantly higher prevalence rates of MR were reported when these measures were used. Overall, the findings indicate that more empirical evidence is needed before conclusions can be made about the percentages of children with autism who are mentally retarded.

      http://www.willamette.edu/dept/comm/reprint/edelson/

    • Regan

      Interesting discussion related to Kanner, etc.

      GERNSBACHER, M. A., GEYE, H. M., & ELLIS WEISMER, S. (2005).
      The role of language and communication impairments within autism.
      In P. Fletcher & J. C. Miller (Eds.), Language disorders and developmental theory.
      Philadelphia, PA: John Benjamins.
      http://psych.wisc.edu/lang/pdf/gernsbacher_chapter.pdf

      More discussion of intelligence, testing, and what is being measured.
      DAWSON, M., SOULIÈRES, I., GERNSBACHER, M. A., & MOTTRON, L. (2007).
      The level and nature of autistic intelligence. Psychological Science, 18, 657-662.
      http://psych.wisc.edu/lang/pdf/Dawson_AutisticIntelligence_PS_2007.pdf

    • Chuck

      Based on what studies are these test reliable forecasting tools on future potentials of the child taking them? Have there been any follow-up studies for comparison after 2003? I have heard little to nothing about the use, benefit, or administration of either of these tests in school systems or ASD populations in my geographic region.

    • http://mayfly mayfly

      Laurentius, i totally agree that IQ levels for autistics are underestimated.

    • Pingback: The Claim of the Autism Epidemic

    • http://drsavitz@hotmail.com donald savitz

      Could it be that there in not an epidemic bout look like an epidemic becaue the rules may haved changed over the years. Do think that the first DSM-1 may have been too norrow and how that we up to DSM-1V maybe they just loosened the diagnosis that may enclue other things like alcohol systrom, nitrate poison {from well water on farms} whitch would bring up the count. I am not sure how they tell the difference of if you can tell the difference between that and autism.

    • Pingback: Now Where Was It You Heard About the Autism Epidemic?

    • Regan

      Just more data…
      FYI: Coo H, Ouellette-Kuntz H, Lloyd JE, Kasmara L, Holden JJ, Lewis ME. (2008). Trends in autism prevalence: diagnostic substitution revisited. Journal of Autism and Developmental Disorders, 38, 1036-1046.

      There has been little evidence to support the hypothesis that diagnostic substitution may contribute to increases in the administrative prevalence of autism. We examined trends in assignment of special education codes to British Columbia (BC) school children who had an autism code in at least 1 year between 1996 and 2004, inclusive. The proportion of children with an autism code increased from 12.3/10,000 in 1996 to 43.1/10,000 in 2004; 51.9% of this increase was attributable to children switching from another special education classification to autism (16.0/10,000). Taking into account the reverse situation (children with an autism code switching to another special education category (5.9/10.000)), diagnostic substitution accounted for at least one-third of the increase in autism prevalence over the study period.

      Linking to the Pubmed abstract because there are related articles in the sidebar–it’s a body of evidence, not necessarily the citing of one particular paper.

    • http://www.autismvox.com Kristina Chew, PhD

      Interesting that the “reverse situation” of children with an autism code switching to another special education category was also studied.

    • Pingback: Is There an Autism Epidemic? Not Exactly, But... | Care2 Causes