What is autism?

6 Apr

Consider a child who undergoes a traumatic event. This child develops “behavioral symptoms normally associated with the syndrome of infantile autism”. After treatment and time, the symptoms improve.

Did the child have autism?

It’s a pretty serious question, and not as simple as many think. Many think autism is defined merely as “a collection of symptoms”.

The question “what is autism” has been discussed a lot in the last year, both directly and indirectly. This was prompted in large part by the Hannah Poling concession, and often centered around the phrase “features of autism”.

Lisa Rudy at autism.about.com recently addressed this issue in a blog post: If It Looks Like Autism and It Acts Like Autism…

In her post she states:

But according to the diagnostic manual, unless the symptoms can be better explained by Retts disorder, Childhood Disintegrative Disorder or Schizophrenia – people with autism-like symptoms have an Autism Spectrum Disorder.

Well, yes and no. I’ll go into it because this bugs me somewhat, so indulge me while I explore this. There are three important facts that many leave out from the DSM-IV’s diagnostic criteria for autism.

First–the DSM-IV is a set of “diagnostic criteria”, not a definition of the disorders.

Second, consider this phrase in the diagnostic criteria:

Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years: (1) social interaction, (2) language as used in social communication, or (3) symbolic or imaginative play.

Emphasis added.

The criteria of “before age 3” is very important. I’ll discuss this more below.

The third “fact” that people tend to ignore is related to the age 3 criterion:

The closest thing to a definition of Autism in the DSM-IV is as a “Pervasive Developmental Disorder”. Again, emphasis added.

Sorry for the sidetrack. But, there is a difference between the diagnostic criteria and the definition of what autism (or any condition) is.

However, this does not mean, as I have have asserted incorrectly in the past, that the fact that autism is a developmental disorder precludes giving an autism diagnosis to someone suffering from an injury. Developmental disorders include, for example, traumatic brain injury.

OK, now that we have given more depth to the “definition” of autism, what about that example I started this post with?

Consider a child who undergoes a traumatic event. This child develops “behavioral symptoms normally associated with the syndrome of infantile autism”. After treatment and time, the symptoms improve.

And, no, I wasn’t referring to Hannah Poling or to anyone you probably were thinking of. This example is from this paper, Acute onset of autistic features following brain damage in a ten-year-old . Here’s the abstract:

Abstract We report the case of a 10-year-old boy who, following a prolonged period of unconsciousness, displayed severe eye-to-eye gaze avoidance, sensory inattention, and some other behavioral symptoms normally associated with the syndrome of infantile autism. The symptoms lasted only a few months and were associated with the more permanent behavioral changes of post-encephalitic psychosis. Serial computerized tomography scans were taken during his illness and recovery. The relevance of this case to the etiology of infantile autism is discussed.

I’ll admit: I wasn’t able to get the paper from the library and I didn’t pay the $34 to download it. I’d really like to read this in full, because it raises some very interesting questions.

One big question arises from the fact that this child isn’t/wasn’t autistic. He had autistic features, but he wasn’t autistic. Why wasn’t he given an autism diagnosis? Well, for one big reason, the symptoms had an onset at age 10.

Now, here is where it gets interesting. Consider this hypothetical situation: What if a two year old had the exact same causes for his autistic behaviors as the 10 year old in this paper? Would the 2 year old be “autistic” while the 10 year old isn’t?

It’s worth taking a moment to think that one through. This is a big question.

If symptoms define one as autistic or not, then both the 10 year old and the hypothetical 2-year-old are autistic. But, if we include the criteria that onset of symptoms must occur before age 3, then only the 2 year old is autistic–even though the cause is the same.

Obviously this doesn’t make any sense. How do they solve this contradiction? Does the 10 year old get an autism diagnosis? Does the 2 year old not get a diagnosis?

As I noted above, this is a much more difficult question than most people (even self-designated experts) want to make it out to be.

19 Responses to “What is autism?”

  1. Loftmatt April 7, 2009 at 02:20 #

    I think there are various problems related to how autism is diagnosed. For instance, in most studies in the last 5 or 10 years, the DSM-IV / ICD-10 criteria for Asperger’s syndrome have become largely ignored because the requirement of no clinical significant impairment in communication prior to 3 years has caused, according to many researchers, cases to be missed in a larger number of individuals. Instead, researchers have largely chosen to use Gillberg’s or other diagnostic criteria for Asperger’s which don’t have an age limit for onset. DSM-V needs to correct for this problem.

    Another diagnostic problem I run into regularly, which I suspect is impacting measurement of autism incidence, is that many researchers don’t consider genetic disorders that result in autistic behavior to involve autism. If the researcher can pin the behavioral abnormalities on tuberous sclerosis, or phenylketonuria, or fragile x syndrome, then the child doesn’t have autism. For many researchers, you need autistic behaviors and no simple genetic explanation (idiopathic autism) to get an autism diagnosis. Generally, researchers seem to tend to the more concrete or specific diagnosis – if they can give a label based on a genetic screen, they are much happier doing so than based upon a behavioral evaluation.

    My personal belief is that autism should not be talked about in terms of being a single disease entity – many diverse and unrelated genetic and environmental causes can result in a child behaving in an autistic fashion. If you can only diagnose autism based on behaviors, then we should really be talking about autistic behaviors (adjective), rather than autism (noun). Thus, a child might display autistic behaviors, likely secondary to a chromosomal mutation such as Rett Syndrome or Prader-Willi syndrome. Or, a child might display autistic behaviors of unknown origin.

    Thus, according to my way of looking at things, under Kev’s hypothetical, diagnoses of autistic behaviors would be appropriate for both 2 year old and the 10 year old. Autistic behaviors could be transient or permanent. Of course, I know adopting my suggestions would have all kinds of implications that people would not like, such as how does insurance pay for treatment of behaviors rather than a disorder?

  2. Loftmatt April 7, 2009 at 02:28 #

    With corrections:

    I think there are various problems related to how autism is diagnosed. For instance, in most studies in the last 5 or 10 years, the DSM-IV / ICD-10 criteria for Asperger’s syndrome have become largely ignored because the requirement of no clinical significant impairment in communication prior to 3 years has caused, according to many researchers, cases to be missed in a larger number of individuals. Instead, researchers have largely chosen to use Gillberg’s or other diagnostic criteria for Asperger’s which don’t have an age limit for onset. DSM-V needs to correct for this problem.

    Another diagnostic problem I run into regularly, which I suspect is impacting measurement of autism incidence, is that many researchers don’t consider genetic disorders that result in autistic behavior to involve autism. If the researcher can pin the behavioral abnormalities on tuberous sclerosis, or phenylketonuria, or fragile x syndrome, then the child doesn’t have autism. For many researchers, you need autistic behaviors and no simple genetic explanation (idiopathic autism) to get an autism diagnosis. Generally, researchers seem to tend to the more concrete or specific diagnosis – if they can give a label based on a genetic screen, they are much happier doing so than based upon a behavioral evaluation.

    My personal belief is that autism should not be talked about in terms of being a single disease entity – many diverse and unrelated genetic and environmental causes can result in a child behaving in an autistic fashion. If you can only diagnose autism based on behaviors, then we should really be talking about autistic behaviors (adjective), rather than autism (noun). Thus, a child might display autistic behaviors, likely secondary to a chromosomal mutation such as Rett Syndrome or Prader-Willi syndrome. Or, a child might display autistic behaviors of unknown origin.

    Thus, according to my way of looking at things, under Sullivan’s hypothetical, diagnoses of autistic behaviors would be appropriate for both 2 the year old and the 10 year old. Autistic behaviors could be transient or permanent. Of course, I know adopting my suggestions would have all kinds of implications that people would not like, such as how does insurance pay for treatment of behaviors rather than a disorder?

  3. chaoticidealism April 7, 2009 at 03:07 #

    As far as I can tell–

    TBI would be a better diagnosis because of the known cause.

    When you know the cause for sure–say, you found the virus or you isolated the tumor or you pinpointed the chromosomal abnormality–then the diagnosis goes into the category with the known cause.

    However, an additional diagnosis of autism may be given, if the description fits, just as an additional diagnosis of “developmental delay” may be given to someone whose DNA shows Down Syndrome. For the most part, that diagnosis would be there if the symptoms fit autism and, therefore, the same therapies would be useful. A diagnosis is only useful insofar as it aids treatment.

    With a late onset and a known cause of the autistic symptoms, the diagnosis would probably be CDD (for a late onset), Rett’s (if the MECP2 mutation is the cause), or PDD-NOS.

    If the cause was child neglect, an autism diagnosis would be either invalidated by RAD, or else given in addition if there was evidence the child was autistic before the neglect occurred.

  4. Sullivan April 7, 2009 at 05:32 #

    Loftmatt–

    you may have to go back as far as Kanner to find anyone who thought of autism as a single entity. Seriously, you can find people talking about “autisms” for at least 30 years.

  5. Joseph April 7, 2009 at 05:41 #

    I think the question that needs to be asked is why the age of onset requirement is there. What useful purpose does it serve?

    I can take a guess as to why historically it’s there. Kanner emphasized onset before 30 months of age. This most likely evolved into the age 3 requirement of the DSM-IV.

    The reason Kanner emphasized such an onset is that he thought autism was different to childhood schizophrenia. Basically, he didn’t think autism involved what we now call “regression.” If it did, it wasn’t autism.

    Let me quote from Kanner (1943):

    The outstanding, “pathognomonic,” fundamental disorder is the children’s inability to relate themselves in the ordinary way to people and situations from the begining of life. Their parents referred to them as having always been “sel-sufficient”; “like in a shell”; “happiest when left alone”; “acting as if people weren’t there”; “perfectly oblivious to everything about him”; “giving the impression of silent wisdom”; “failing to develop the usual amount of social awareness”;“acting almost as hypnotized.” This is not, as in schizophrenic children or adults, a departure from an initially present relationship; it is not a “withdrawal” from formerly existing participation.

  6. Catherina April 7, 2009 at 09:43 #

    Sullivan, if you email me at
    catherina at mail2world dot com
    I have the paper for you.

  7. Lisa April 7, 2009 at 14:18 #

    Before writing about autism dx, I did consult three different experts – a developmental pediatrician specializing in autism, a psychologist ditto, and a general pediatrician.

    All three agreed that autistic-like symptoms and ASD are essentially the same thing – and that autism spectrum disorders (that is, autism-like symptoms that develop before the age of 3) can be caused by a whole raft of problems including but not limited to brain damage, tuberous sclerosis, mitochondrial dysfunction, etc.

    I’m not a doc, and must say I was a bit surprised at this consensus… what it means, in essence, is that it’s perfectly possible to dx ASD “as a result of an in-utero stroke” or whatever…

    Makes you wonder about the rising numbers!

    Lisa

  8. Laurentius-rex April 7, 2009 at 17:05 #

    One should never underestimate the social constructive element in any condition or disorder, in that the focus is always on the symptoms that have most social significance.

    Dyslexia is another classically ill defined condition, whose principal manifestation would not have been visible in a pre industrial, pre literate society.

    All autism research is dogged by the imprecision of the systems of diagnoses.

    One has to realise that a person could be diagnosed by one edition of DSM and not by another, so how to include in the research?

    Does that mean that with every shift of the paradigm, those diagnosed under the first but not the second are cured, or does it meant they never had it in the first place.

    It is like trying to decide who was English in the time of the Romans, there was no England but there was a people speaking a proto English language with particular cultural characteristics, even if they were not inhabiting there current realm.

    If one drops the medical categorisation of autism and addresses it as a social/educational phenomenon then it all falls into place.

    Look at another condition. I have a degree of numbness in my left hand, you could call that a neuropathy, but albeit that is a medical name it says nothing of causation, one could have the same numbness from any number of disorders, from Reynauds to a Stroke.

  9. Laurentius-rex April 7, 2009 at 17:10 #

    The notion of developmental disorder needs revision anyway in the light of current neuroscience and genetics.

    For instance a condition such as Alzheimers only manifesting late in life could be as surely in ones trajectory as autism, only the one manifests earlier than the other.

    If I were to try and say what autism is outside of the cultural/social sphere I would tend to describe it as a set of alternative developmental trajectories with specific observable characteristics that tend (only tend mind you) to run together, but may include other differences that have been accorded less significance in the literature or definition.

  10. Laurentius-rex April 7, 2009 at 17:15 #

    And yet another example, taking from Lisa’s post.

    We know what a white house is, yes?

    Well a white house is a white house, be it constructed from limestone, whitewashed brick, or painted clapperboard. Only one of them is inherently white, but it could equally be disguised to appear as another colour by the expedient of rendering.

    Medical science ain’t yet clever enough to tell much about which autisms are inherent and which only rendering.

  11. Laura April 8, 2009 at 04:26 #

    This isn’t exactly on what the post was about, but it reminded me of something I end up having to explain all the time. The difference between Autism and Pervasive Developmental Disorders… I think parents get scared with the “Autism Spectrum Disorders” whereas “PDD” has somewhat of a softer ring to it and may be more descriptive of their child. Trying to explain to a new parent that there child may be on the Autism Spectrum but isn’t technically “Autistic” but PDD, is really difficult.

  12. Jorge Campo April 8, 2009 at 11:10 #

    The main problem with symptoms is when those symptoms remain in the sphere of behavioral issues.
    Autism does not have a physiological marker,rather it is considered as such from a bunch of behaviors.
    There is a circular reasoning in place when we do so:
    1. We observe certain behavioral responses
    2. We classify those responses and give them a label
    3. The label explains the behavioral responses that we have observed in the first place.

    So we must consider that if symptoms remain at a behavioral level they can not jump from there into a diagnosis.

    Certain behavioral responses can be or are clues (symptoms) of certain illnesses that we can try to figure out with analysis or other physiological tools.
    However, behavioral responses alone cannot be used to “explain” illnesses.

    So, if we separate behavioral responses from the medical model, we can begin to understand why there are so many flaws while trying to force behaviors into medical classifications.

  13. David N. Andrews M. Ed. (Distinction) April 9, 2009 at 21:31 #

    “So, if we separate behavioral responses from the medical model, we can begin to understand why there are so many flaws while trying to force behaviors into medical classifications.”

    And this is why autism isn’t something we can really understand medically.

  14. jcampodelgado April 10, 2009 at 13:06 #

    Exactly David!
    as long as we deal with behaviors, they are not at the same level of diagnosis or ilnesses and therefore their characteristics are different.
    For example:
    there is no autistic or not autistic behavior
    every behavior is unique
    behaviors can have similar topographies (forms) but different functions

    the list can go on and on…

  15. me.yahoo.com/a/TuRz.joYnfzpKUWMPSYwTtN6HTLFunmLzPblUMkn April 10, 2009 at 21:40 #

    Behaviour is simply a product of thoughts and feelings. It is not that complicated. The main feelings are either good i.e. gratitude, acceptance, trust and honesty or the opposite bad feelings i.e. self-pity, resentment, fear and dishonesty. These feelings are often associated with obsessive-compulsive behaviour which may be initially soothing but the become annoying.
    It appears that when neuro-inflammation occurs the thoughts/feelings/behaviour become extreme and the patient is hypersensitive to their feelings.
    In so many psychiatric diseases including autism there are immune abnormalities and structural changes in neurons particularly dendrite spines which may account for these findings.
    Hopefully, in the near-future the diagnostic criteria for psychiatric disease will become simpler and relate to which extreme feelings predominate and may correlate to where the neuro-inflammation in the brain predominates.
    Current psychiatric nosology is probably out-dated and pigeon-holes patients inappropriately on many occassions.
    http://en.wikipedia.org/wiki/Psychiatric_nosology
    http://www.ncbi.nlm.nih.gov/pubmed/15163244?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DiscoveryPanel.Pubmed_Discovery_RA&linkpos=5&log$=relatedarticles&logdbfrom=pubmed

  16. jcampodelgado April 11, 2009 at 15:52 #

    Behaviour is simply a product of thoughts and feelings. It is not that complicated.

    Actually I see it the other way around. Feelings and thoughts occur because we behave.

    Since there are infinite behaviors and not behavior is equal to another behavior, I am afraid that a classification medical model would be always outdated.

  17. me.yahoo.com/a/TuRz.joYnfzpKUWMPSYwTtN6HTLFunmLzPblUMkn April 11, 2009 at 17:04 #

    Are you saying that the muscles which are responsible for speech and movement i.e. “behaviour” are autonomous of the brain and do not rely on the brain`s thoughts/feelings for their contractions/movement and subsequent “behaviour”?

  18. Jorge Campo April 12, 2009 at 17:16 #

    Muscles are sometimes necessary for behavior but not sufficient. A brain is necessary for behavior but is neither a sufficient condition.
    Behavior relates to the entire organism as a whole, not only a part (muscles, brain, etc.).
    On the other hand, behavior is not located in a physical place like the brain or other place.
    To behave relates to the idea of interaction, not placement or movement.

Trackbacks/Pingbacks

  1. Unrepentant » Blog Archive » Some Light Reading for the Weekend (11/04) - April 12, 2009

    […] Consider a child who undergoes a traumatic event. This child develops “behavioral symptoms normally associated with the syndrome of infantile autism”. After treatment and time, the symptoms improve. Did the child have autism? It’s a pretty serious question, and not as simple as many think. Many think autism is defined merely as “a collection of symptoms”. https://leftbrainrightbrain.co.uk/?p=2065 […]

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