How the Hidden Horde were hidden

1 Aug

One of the (many) controversies within the autism community is the question of the hidden horde. The basic argument is:

1) Autism diagnosis have ‘increased’ massively in recent years. Prevalence now stands in the UK at approx1 in 100 and approx 1 in 150 in the US.

2) Something(s) must have caused this large scale increase.

This is where the division point is. Devotee’s of the ‘autism is vaccines/TV/mobile phones/whatever’ ideas say that the increase is not in diagnosis but in autism itself. That there really is a massive increase since the early 90’s in the amount of autistic people. They call this ‘the epidemic’.

People like me think that there may be a small ‘real’ increase but it is very small and what we are seeing is the effect of (to quote an authority on the subject):

The shift in how we view autism….is part of a broader set of shifts taking place in society.

…..

Doctors now have a more heightened awareness of autism and are diagnosing it with more frequency, and public schools….which first started using the category of autism during the 1991 – 1992 school year are reporting it more often….Epidemiologists are also counting it better.

…..

Still, these rates may not be proof of an epidemic. Why? Because the old rates were either inaccurate….or based on different definitions of autism than the ones we use now.

Interestingly, in the Autism Omnibus hearings, the families are now arguing (after years of ‘epidemic’ talk) that the amount of children allegedly poisoned by vaccines is so small as to be undetectable. Hardly a hallmark of an epidemic.

One of the arguments used by people who believe there has been an epidemic of autism is to say ‘if there has _not_ been an epidemic, then where are all the adult autistics?’ meaning that if the rate of autism has always been 1 in 100 or 1 in 150 then there should be an equal number of adult autistic people to children.

Its a logical thought but it doesn’t take into account one crucial fact; as far as I know, *no* epidemiological study has tried to count the adult autistic population in any country. So we have no real idea how many adult autistic people there are.

We have some clues – such as the 2004 Scottish audit that revealed that 45% of local authorities in Scotland considered adult prevalence grossly underestimated. For example, Perth and Kinross commented:

Figures for adults reflect the national findings that the numbers known to services/diagnosed represent a significant underestimate of those individuals likely to be affected. For example day centre managers locally consider a number of people to be on the spectrum who have had no formal diagnosis.

And this year, the UK Gvmt announced the would be undertaking the first ever audit of autistic adults in England.

But we do have the odd clue thrown to us now and again that shows where the so-called Hidden Horde might be. As the Scottish Audit suggests, they live amongst us, unrecognised or wrongly diagnosed.

Two recent studies from the Netherlands have shed a bit more light on what may be happening with adults.

In ‘Autistic Spectrum Disorders in Adults‘, the abstract states:

The expression of impairments in social interaction, communication, imagination and mental flexibility changes during development into adulthood.

Autism spectrum disorders in adults may mimic, or be overshadowed by, other psychiatric disorders.

Almost a direct agreement with the Perth and Kinross statement from the Scottish Audit.

The second paper ‘Recognition of autism spectrum disorders in adults‘ has an Abstract worth quoting in full;

Autism spectrum disorder was diagnosed in three adults. The first patient, a married man aged 41, was referred to a psychiatrist with ‘impending burn-out’. The second was a 32-year-old male student with schizophrenia and a depressive disorder who was referred to a centre for autism because a friend of his mother’s knew someone with Asperger’s syndrome. The third patient was a 25-year-old woman with a ‘fixation on food’ who was referred by her general practitioner to a psychiatrist for evaluation of longstanding use of antidepressant medication. Autism used to be thought of as a condition of childhood. Only recently has the diagnosis and treatment of autism spectrum disorders become the focus of attention in adult psychiatry. It is made all the more difficult as during development into adulthood, the expression of disorders of reciprocal social interaction, communication, imagination and repetitive stereotypical thinking and actions, change.

This again shows how autism can be ‘masked’ and how diagnostic tests suitable for children may not be suitable for adults. It also touched on another key issue – that only recently have adults begun to be looked at. It also thirdly touched on another issue – comorbidity. All these three people had ‘other’ psychiatric issues. I have no idea if their diagnosticians considered their autism to be comorbid or if their other diagnoses were considered comorbid to their autism. In the end it doesn’t really matter, except in one important regard: By failing to help these people properly when they were children, did their other psychiatric issues grow so pronounced that their autism was ‘eclipsed’ until a suitable diagnostic test was undertaken? If that is the case then we need to be very aware that there is indeed a large population of adults who have not got a full and proper diagnosis and thus are missing out on help they need and deserve.

7 Responses to “How the Hidden Horde were hidden”

  1. Socrates August 1, 2008 at 13:07 #

    The Scottish Prisons’ Autism Audit due to be published this autumn should make interesting reading. Digby Tantam has claimed c.80% of childhood ASD’s become sub-clinical by adulthood. However, in the same presentation he went on to say Aspergers can be as disabling as schizophrenia…

  2. Lisa August 1, 2008 at 15:22 #

    Kev, do you have any thoughts about how, in fact, we could EVER know whether there is an autism epidemic? So far, I’ve been unable to find any reliable numbers that separate out increase in “classic” versus “new” autism.

    AofA folks point to California numbers, but Eric Fombonne says they’re unreliable….

    David Kirby says that increased awareness and changes in criteria “can’t fully explain the increase in diagnoses,” but I’ve never really understood why he feels that way.

    Meanwhile, PDD-NOS is becoming the most common ASD diagnosis – but PDD-NOS tells us nothing about the functional level of the people with the diagnosis. It’s such a catchall that it can easily include both “classic” and “new” autistics, leaving us with no way to distinguish or make a useful count.

    I’m sure that if we go back and examine a random cohort of adults, we’ll find plenty of diagnosable Asperger syndrome and HFA even among apparently well-adjusted, successful individuals. If we examine a non-random cohort (say in a science lab or math department of a university) I’m guessing we’ll find a large collection of successful adults with AS.

    I’m also sure there are many more profoundly disabled adults with diagnoses of schizophrenia, MR, psychosis, etc., who would now be labelled ASD.

    But is there any way to know whether there are “enough” to fill that critical gap? Almost feels like the quest to figure out whether the universe is expanding, based on the amount of dark matter in black holes!

    Lisa Rudy
    http://www.autism.about.com

  3. Schwartz August 1, 2008 at 15:53 #

    Kev,

    I’m assuming the diagnostic criteria for ASD was originally designed for evaluating children. Do you know if it can be directly applied to older adults? Is there a different way they currently get evaluated?

    Just to clarify on the epidemic statement: epidemic is defined as an unexpected number, it does not imply large, just larger than expected.

    As for the arguments about the epidemiology not able to detect small populations, that is a valid statistics argument, so you need to be careful using terms like small out of context. Small is in reference to the power of the study and the relative size of the group they are trying to detect.

    It has been acknowledged that many if not most of the epidemiology studies done to date, did not have the power to detect “relatively” small at-risk populations within the study group set.

  4. RAJ August 1, 2008 at 17:16 #

    The largest increase is in PDD/NOS. Johnny Madsen has published dozens of peer reviewed quality articles on the developmental disablities, including ‘autism’. Madsen is on the editorial board of the Journal of Autism and Developmental Disorders and has said it best. PDD/NOS is defined by what it is not ‘autism’.

    The myth of an autism epidemic may have nothing to do with better ‘awareness’ and ‘broadening definition’ but rather gross misdiagnosis on a global scale.

    There was another unexplained rise in the incidence of ‘autism’ that began a few years after Kanner published his defining article in 1943 and lasted for about ten years. This apparent ‘autism’ epidemic which has been long forgotten was explained by Leo Kanner in 1965:

    http://neurodiversity.com/library_kanner_1965.html

    Kanner wrote:

    “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”

    He also noted:

    ‘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 shifting in conceptualization of autism definition began in 1987. In 1980 the APA’s DSM-III (1980) incorporated Kanner’s definition as a requirement to qualify for an autism diagnosis – “A pervasive lack of responsiveness to other people – autism.

    The 1987 edition of the DSM (DSM-III-R) relegated Kanner’s definition to one of five isolated symptoms in the social domain and was no longer required to qualify for an ASD diagnosis. A field trial of DSM-III-R compared to DSM-III and a draft ICD-10 reported that ‘autism’ was being overdiagnosed:

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

    A sea change occurred in 1994 (the start of the epidemic) when the working group on autism and the PDD’s published their new diagnostic criteria. In the years leading to the publication there was a great deal of discussion in the JADD about children who were developmentally in trouble but who defied categorization and were slipping through the cracks in terms of access to early intervention and access to special education. The decision was to broaden the concept of ‘autism’ in order to give these children a passkey to special education and early intervention, a noble idea but one whose unintended consequences has led to the impression of a global autism pandemic and all sorts of theory’s to explain it. The research community has invoked ‘diagnostic substituion’ which is another word for misdiagnosis. Children who did not qualify for an autism diagnosis prior to 1987 (Fragile X, Tuberous Sclerosis, Down’s syndrome ) now routinely qualify for an autism diagnosis if they meet 8 of 16 items published in DSM-IV (1994).

    Thw working group on autism and the PDD’s made a fundamental error in the diagnostic scheme they published. Kanner’s definition was completly removed and replaced by the vague, ambigous and subjective ‘Qualitative impairment in social interaction’. This was not as many claim a ‘broadening of diagnostic criteria’, it abandoned Kanner’s definition entirely.

    Within a few years after its publication as Kanner wrote ‘almost overnight a multitude of autistic children began appearing everywhere incuding overseas’.

    How vague is this new definition? Romanian orphans who were abandoned at birth and suffered extreme emotional deprivation now qualify for an ASD diagnosis using such Gold Standard tools as ADOS-G and ARI-R which are based on DSM-IV and ICD-10 diagnostic criteria.

    http://www.ncbi.nlm.nih.gov/pubmed/10357161?

    Ironically, since Kanner’s definition has been removed, the children described by Kanner have no diagnostic category to fit into and are now included under the umbrella label of ‘Autism spectrum Disorders”

    Here is the diagnostic checklist for autistic disorder as defined by DSM-IV (1994):

    http://www.cdc.gov/ncbddd/autism/overview_diagnostic_criteria.htm

    All 16 items are isolated symptoms not specific to Kanner’s definition and are present in all neurologically impaired children with or without a specific diagnosis. If eight of the isolated symptoms are checked off the child qualifies for an ASD diagnosis.

    Future editions of DSM’s and ICD’s as well as the ‘Gold Standard” diagnostic tools used to confer an ASD diagnosis should consider reintroducing Kanner’s definition for the small subgroup of those diagnosed with an ASD who actually resemble the children Kanner first identified in 1943.

    In short, the research community has itself to blame for the false impression of a global autism pandemic with the introduction of crackpot theories to explain the pandemic (ie vaccine induced autism)a case of the chickens coming home to roost.

  5. Credence August 1, 2008 at 18:46 #

    I’ll agree with this in part
    “In short, the research community has itself to blame for the false impression of a global autism pandemic with the introduction of crackpot theories to explain the pandemic (ie vaccine induced autism)a case of the chickens coming home to roost.”

    Some researchers calculatedly helped to create a climate of fear of autism epidemic because it was effective in driving funding their way. If you go back and read the introductions to research papers on autism written in the early 2000s. You’ll find many where researchers were milking the ‘epidemic’ for all it was worth. There are statements to the effect of since autism is threatening to eclipse all other diseases and bring and end to the world as we know it we thought it would be good to study it in this way. These same kinds of statements were used in grant applications you can be sure. I would hope that there would be some kind of draconian penalty for scientists who exploited the crackpot idea of an epidemic. Off the top of my head I think beheading, caning or putting them in a small cell with Lenny Schafer, Rick Rollens, David Kirby and Kelly Ann Davis would be appropriate.

  6. Credence August 1, 2008 at 18:55 #

    Lisa Jo Rudy,

    The California numbers show in an exquisite way that there has been no epidemic. The majority of the ‘epidemic’ in California is confined to particular areas of Southern California.

    Autism Diva posted this on the Autism Speaks board in October 2007.
    http://www.autismspeaks.org/community/forums/archive/index.php/t-2496.html

    ————————-
    Rollens and I both sat at the same table discussing the faux epidemic as members of the “autism epidemic task force” of the UCD MIND Institute. I know that he knows that the numbers in California in no way represent and epidemic because he knows how the numbers are imbalanced to a significant degree across the State. This matter was discussed at that meeting.
    http://autismdiva.blogspot.com/2007/07/lovaas-and-epidemic-epicenter.html

    I personally think that Rollens keeps flogging the epidemic though he knows for a fact that there has been none. This is because he works as a well paid lobbyist for the independent (nonprofit) Regional Centers. Every time he cries “tsunami! we’re about to be destroyed!” he increases the likelihood that the State legislature will pump more money into the Regional Centers. There’s an interesting pattern of him being paid, more and more and more, at high rate of increase every year that he’s been working for the RCs. They like his work, obviously. They compensate him generously for it. I think he’s a phony, but that’s just my opinion. I’m sure he knows my opinion, but you can remind him for me, if you like. 🙂

    http://autismdiva.blogspot.com/2007/07/malibu-and-compton-compare-and-contrast.html
    http://autismdiva.blogspot.com/2007/07/california-autism-epidemic-gold-rush.html
    http://autismdiva.blogspot.com/2007/07/california-autism-epidemic-gold-rush.html
    http://autismdiva.blogspot.com/2007/07/andrew-wakefields-fitness-to-practice.html
    http://autismdiva.blogspot.com/2007/04/fear-and-loathing-in-autism-research.html

    There’s been no explosion of autism in California, just a steady increase that should continue as the rest of the state and the non-white groups catches up to the white group and the LA basin.

    There will continue to be more scary quarterly press releases from Rollens until people in California look around and wonder where are all these scary autistic kids we keep hearing about. Since autism is supposed to have been exploding every quarter here for years on end, you’d think we’d have no normal kids left. Hopefully, reporters will catch on and tell him they aren’t interested in printing his ever more shrill cries of devastation and destruction, though they are certainly the kinds of “bleeding” stories that are favored by reporters, they just are not true and reporters have some kind of interest in maintaining their credibility. I think.

  7. Sullivan August 1, 2008 at 21:13 #

    David Kirby says that increased awareness and changes in criteria “can’t fully explain the increase in diagnoses,” but I’ve never really understood why he feels that way.

    He may be relying on a report commissioned by the State of California and performed by UC Davis which came to this conclusion. The report (available on the state of California website) is rumored to have been submitted for publication but never published.

    AofA folks point to California numbers, but Eric Fombonne says they’re unreliable….

    Fombonned is correct, AoA is wrong. The CDDS data are not a count of everyone with autism in California. It is a count of everyone receiving services in California under the Autism category. So, people not receiving services and people receiving services under different labels are not counted. Doesn’t mean they don’t exist and have autism.

    One example of this is the fact that while there is an autism “Tsunami” in the CDDS numbers (A peak at young ages), there is a large decrease in mental retardation at young ages. Why isn’t anyone asking what California is doing to prevent retardation?

    Lastly, when you speak of checking cohorts of adults, it just so happens that David Mandell has done just this with adults in hospital settings. He found that a large fraction with schizophrenia diagnoses.

    But, will there ever be an effort–and can there be an effort–to identify all the adults? Likely not.

    This is one instance where our good friends at AoA seem to forget one of their catch-phrases: absence of evidence is not evidence of absence.

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