Monday, May 29, 2006

Cultural Construct Misconceptions

Readers might see this entry as entirely theoretical. Well, I find concepts and ideas fascinating and that's why I'm writing about this, so bare with me. Also, I think this particular concept is in fact useful.

I get the feeling there are several misconceptions about the notion of autism as a cultural construct, and I hope to address them with a list of points and a follow-up example. Some of these misconceptions are aspects of the theory that I have been confused about myself.


  • Saying that autism is a cultural construct is simply an ideology.

    Actually, a cultural construct or social construct theory about an entity is a scientific theory that is falsifiable. It should not be confused with Neurodiversity, which is an ideology.

  • Claiming that autism is a cultural construct is equivalent to claiming that autism is not "real" - that it does not exist, or that it's not useful.

    No. Cultural constructs are very real and useful. Language is a cultural construct. Countries are a cultural construct. Money is a cultural construct. Believe me, I'm not about to cash all my savings and throw them away because money is a cultural construct. The purpose of cultural constructionism is to understand the usefulness of cultural constructs.

  • It means that people cannot identify as autistic.

    That's not correct. See the Example section below.

  • It means there are no differences between autistics and non-autistics.

    The fact that differences between autistics and non-autistics can be found is not surprising. Differences can probably be found across any behavioral spectrum, regardless of where the spectrum is divided. Differences can be found between men and women; between races; between any two groups of people, in fact. These differences are often found to occur 'in average' (i.e. they can't be generalized), but this is not a requirement of cultural construct theory.

  • It means autism does not have a cause or a treatment.

    Again, this is not correct. Cultural constructs may have underlying mechanisms which are not only cultural, including but not limited to genetic mechanisms. See the Example section below.

  • Cultural construct theory only applies to 'mild' cases of autism.

    There is no such limit imposed by cultural construct theory, and there is no non-cultural way to define such a boundary.

  • Cultural construct theory does not have a practical application.

    I think cultural construct theory can help explain the "autism epidemic" and help decipher some of the causes of autism. Current thinking of autism as an identifiable "brain disease" is leading nowhere. The example below provides a model which could be helpful in this regard.



Example

A straightforward cultural construct is short stature. Consider how short stature is defined. Should only the bottom percentile of the population in height be considered short? How about the bottom 5%? 10%?

Is it real? Of course. Does it have causes? Yes, it probably has many causes, including genetics. Is it pathological? In some cases it probably is. Is pathology determined by severity? Not necessarily. Is it treatable? Human Growth Hormone (HGH) can help - whether it's advisable to use it is debatable. Can people identify as short? Evidently. Is it absolute? "Short" surely has a different meaning in different cultures. Can it be a burden and lead to suffering? I'm sure it can.

A more relevant example of a cultural construct is mental retardation. Consider how the questions above are answered in regards to this construct.

Further Reading

- Timimi, S. Taylor, E. ADHD is best understood as a cultural construct. The British Journal of Psychiatry (2004).

- Timimi, S. Diagnosis of autism: Current epidemic has social context. BMJ (2004).

44 comments:

  1. My favorite example of a cultural construct is "temperature talk." While temperature itself is a thoroughly-understood, purely physical phenomenon, concepts such as "warm," "hot," "cool," "cold" and "mild" are purely social/cultural constructs. They're arbitrary boundaries imposed on the variation of the physical phenomenon. They can't be derived from physics itself.

    Similarly, "races" are arbitrary boundaries drawn inside arbitrary sets of phenotypic characteristics. Those characteristics are biological, but the biology itself provides no basis for deciding where, or even whether, to draw those boundaries or for choosing which characteristics to include. While temperature and phenotypic variation are concrete "things," "races" and "temperature talk" are abstractions invented by humans for their own convenience. To treat them as physical realities is to commit the category mistake of reification.

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  2. I wrote a paper on the same sort of topic... it was accepted as my first paper towards my MEd degree (which I am about to finish) and the PgCertSpEd which is a pending award owing to its imminent subsumption into the MEd (because I registered for the MEd first, and would have to withdraw from studies to get the PgCertSpEd). The topic dealt with the following issue: "There is still a great deal of controversy concerning the fundamental difficulties of autism, particularly at the biological and psychological levels. Consider a model that enables understanding of these difficulties at both levels, and the implications of such a model as it might inform professional practise."

    My conclusion was as follows (copyright subsists in this work): Assuming that the reader agreed, at least in principle, with the idea put forward in this paper, what might be the first steps towards adopting a field theoretical model to form the basis for good autism practice? It is certainly a daunting task to completely rethink the theoretical background for one’s professional practice. So, in a “constructive alternativist” mood, it may be helpful to explore briefly a couple of useful first steps in the process of changing professional practice.

    There has of late been a trend towards re-describing the “disability” from which the client “suffers”. The tendency has been to replace a descriptive term by the unit “with x”, where x is the suffered disability. This has been done, ostensibly, in order to avoid fusing together the concept of the “disability” with the concept of the client; in other words, seeing the former as the sum total of who the client is (Jordan, 1999). Laudable though the intention may have been, it has lead ultimately to disastrous consequences.

    The most prominent of these consequences has been the “reification of privatives” – the making real of concepts based upon the notion of deficit. Regarding “autism”, the term used to describe deficits has been reified and turned into an illicit reality. “Autistic”, like terms such as “cold” and “dark” describes a state of absence of certain characteristics. And, as there is no “cold” as such (only an absence of heat) and “dark” (only an absence of light), there is no “autism” per se. This internal inconsistency of the positivist model of autism has been overlooked by theorists and practitioners alike. In looking for biological causes for autism, it might be noticed that positive markers for a nonentity are being sought. This author’s preferred device for illuminating this point goes as follows: “Autism” and “haemorrhoids” are different. One is medical; it has identifiable definite causes, identifiable definite shape, and identifiable definite treatment régimes. It fits in perfectly with the positivist perspective of medical science. Autism does not fit in here: it has no identifiable definite causes, nor does it have identifiable definite shape, and so far all attempts to treat it medically have fared in, at best, mediocre fashion, and at worst disastrously. Piles, on the other hand, behaves well according to the medical model, so piles is the medical problem.

    The second major consequence of person-first language in clinical and other professional practice has been the placing of the problem of autism firmly within the person accused of “having” it. This has in turn lead to research attempting to view it as a fault of the person, which must be repaired in order to have the person in working condition again. Such a representation reinforces societal behaviours such as downward social comparisons, outgrouping, “CORF-ing” (cutting off from reflected failure) and the like (Brehm & Kassin, 1996), and so disentangles society from its part in (and thereby, its shared responsibility for) the aetiology of the so-called “autistic spectrum disorders” – a point which leads us to the next one.

    Clinical research and practice on autism has taken a reified non-entity and pursued it in something of a hallucinatory reality, showing a somewhat desperate lack of science in clinical psychology (Meredith, 1972). It has held that “having autism” leads to a course of behavioural responses to things, despite the fact that autism is diagnosed by these behavioural response repertoires. This type of circularism in the logic of diagnosis is a perfect example of “professional thought disorder” (see Parker et al, 1995). The aim of the field theoretical approach to autism is that the behavioural repertoire consistent with the clinical picture(s) of autism is seen in much broader terms than the medical model allows. It therefore entails that the person “with autism” is no longer the site of the pathology; instead the pathology exists in the interaction between person and group. Merely changing the words describing the client will not change attitudes (see, for example, Schein, 2001 - 2002), and thereby reduce prejudice. Only a wholesale reconstruction of what “autism” is, and where it comes from, will do. (Andrews, 2002; unpublished paper towards PgCertSpEd/MEd in applied educational psychology)

    I point out that we have to rethink the siting of "pathology" and move it from the Person to the interaction between Person and Environment, in a Lewinian framework: In the mid-1930s Kurt Lewin was investigating a model for understanding behaviour, giving rise to an equation which maybe should be as important to psychology as Einstein’s energy-mass equation is to physics. The equation B=f(P,E) seems not to be well understood, yet this is probably the best point from which to start when developing a psychological model for any so-called “disorder” – for it shows where the disorder really is situated. According to David Fontana, the main concern is how P and E interact (Fontana, 2000). For a proper introduction to Lewin’s Field Theory, the reader is referred to Fontana’s text: this section will be concerned more with the application of this theory to the question of “fundamental difficulties of autism”. The letters used refer to behaviour, person variables and environment variables, respectively, and this author uses the vector form of this equation to emphasise the dimensional nature of the variables involved. (Andrews, 2002; unpublished paper towards PgCertSpEd/MEd in applied educational psychology)

    Social construction indeed has a part to play in what gets defined as what...

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  3. The above comment made by:

    David N. Andrews BA-status, PgCertSpEd (pending)
    Kotka, Finland

    Applied Educational Psychologist
    (Specialist in Autistic Difficulties in Adult Life)

    International Associate Editor: Good Autism Practice Journal

    Currently finishing off MEd in Special Education (Applied Educational Psychology: Autism - Adults)

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  4. David (and Joseph), do you think it could be said that it is relationships, not people, that are autistic?

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  5. This is a great post. Thanks for writing it. I see culture as an organizing mechanism. Not all people within a culture are the same, either, but identify themselves has possessing a coaelcing word that makes them unique -- black, white, asian, german, handicapped, autistic, downs syndrome.

    And no group should be considered lesser than the other.

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  6. While temperature itself is a thoroughly-understood, purely physical phenomenon, concepts such as "warm," "hot," "cool," "cold" and "mild" are purely social/cultural constructs.

    Incidentally, I could never grasp the precise difference between concepts such as "cool" and "cold". Maybe that's an autistic thing.

    And they are definitely constructs. My idea of hot and cold differs from my wife's, for example.

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  7. David,

    Thanks for sharing that excerpt. Looks like you nailed why autism can be described as a cultural construct, without stating that explictly:

    Autism does not fit in here: it has no identifiable definite causes, nor does it have identifiable definite shape, and so far all attempts to treat it medically have fared in, at best, mediocre fashion, and at worst disastrously.

    I agree with your conclusion:

    Only a wholesale reconstruction of what “autism” is, and where it comes from, will do.

    Current models are just not adequate.

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  8. David (and Joseph), do you think it could be said that it is relationships, not people, that are autistic?

    I kind of see where you're going with that. But autism seems to have characteristics outside of human-to-human communication.

    However, consider dyslexia. Did dyslexia exist before the invention of writing?

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  9. Thanks Estee,

    And no group should be considered lesser than the other.

    Superiority and inferiority are cultural constructs for sure. It's not obvious if they are useful constructs at that - perhaps they serve as informal assesments of personal value by peers or self.

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  10. Ivar Lovaas is a prominent supporter of the view that autism is a social construction and that diagnosis is irrelevant (Lovaas, 2000, 2002). James Mulick expressed similar views when I spoke with him. See http://www.sentex.net/~nexus23/naa_aba.html , section 10.

    The idea that autism is an error of reification is popular in the ABA literature (e.g., see the dialogue between Richard Malott and Jack Michael in the Analysis of Verbal Behavior).

    Re temperature, no. I worked outside for about 17 years total. Frost bite. Hypothermia. Heat stroke. Those are not arbitrary subjective cultural phenomena, and not all "temperature talk" is purely abstract and academic.

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  11. Liz here from I Speak of Dreams. If you substitute "dyslexia" or "specific reading disablity" for "autism" yields interesting results. For example, in a population in which reading, or literacy, isn't prevalent/important...the disability disappears. Universal literacy as a value is a relatively recent phenomenon.

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  12. Liz,

    You absolutely right. It's all relative. As people, we will always classify. We are asked where we are from, what we do, what nationality and so forth, all the time. Particularly when I travel, do I notice these questions.

    I think it is a necessity for autistic people right now to identify themselves as a culture that can speak for itself...in this time, in this place.

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  13. Hi Michelle. It's an honor to have you for a visit.

    Ivar Lovaas is a prominent supporter of the view that autism is a social construction and that diagnosis is irrelevant (Lovaas, 2000, 2002).

    That's interesting, as I would disagree with Lovaas on most everything else. The diagnosis being irrelevant is where he's wrong, and that's why I listed misconceptions. Cultural constructs are not useless or irrelevant - although that's how most people understand and use the 'cultural construct' idea.

    The idea that autism is an error of reification is popular in the ABA literature (e.g., see the dialogue between Richard Malott and Jack Michael in the Analysis of Verbal Behavior).

    Again, I don't see 'cultural construct' as an error of reification. But autistic traits do not just exist in a discrete subset of people and no one else. If you were to evaluate autism in the general population (say, with an AQ test), there would be a normal distribution of scores. The boundary for 'affected' vs. 'non-affected' is established in a subjective way. It's the same with IQ scores and the mental retardation construct.

    Otherwise, how do you explain that before the 1990s, the prevalence of "autism" was 4 to 5 in 10,000? And after the broad autism spectrum concept was invented, the prevalence of "autism" is now 60 in 10,000. Evidently, "autism" has changed; people didn't change in a decade.

    Re temperature, no. I worked outside for about 17 years total. Frost bite. Hypothermia. Heat stroke. Those are not arbitrary subjective cultural phenomena, and not all "temperature talk" is purely abstract and academic.

    As I said, cultural constructs are generally invented for a good reason. Often, they go hand in hand with physical reality.

    Government is a cultural construct. This doesn't mean I'll go an break the law.

    Autism being a cultural construct as opposed to something objectively measurable that exists in nature is not what I'm most interested about regarding cultural constructs.

    Most diseases are not cultural constructs. You either have cancer or you don't. There's no broad cancer phenotype. But disease as a whole, like all concepts, is a construct. And like all constructs, it serves a purpose. Its purpose, I believe, is as the basis of a framework to increase life expectancy and improve quality of life. And it has been a fairly successful construct at that. But when applied to autism, the disease construct does not achieve these objectives. I would even argue it does the opposite. People (namely Judy Singer) have intuitively realized that this construct is inadequate when applied to autism, and have come up with a replacement construct, i.e. Neurodiversity.

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  14. The failure amongst some of our would be advocates (Michelle for example) to grasp what a social construct is leads to misrepresentation and ultimate repression.

    Stature is very much a cultural construct, about the only thing that isn't is death and even then most of what we are concerned with surrounding it is.

    I am now going to repost a parable which shows something about social construction

    "Let us posit a little parable

    Suppose there are two islands whose communties have no contact whatever

    On Island one there lives a tribe, whose members frequently die before adulthood from some inherited condition. The tribe have no concourse with the rest of the world so they have constructed there own mythos on why this happens. It is there normality and not the cause of disease, because they don't have the background to construct it as such, it is merely the choice of the gods.

    Now on the next Island there might live a tribe whose members come of more mixed genetic stock and live a long time, when a child dies in that culture it is seen as something extraordinary and thought to be a curse rather than the natural order of things.

    A western anthropologist might on seeing these two tribes for the first time explain there culture in ways based upon there beliefs and ritual

    A western doctor would merely see the tribe on the first Island as having the curse of inherited disability

    It is all about perspective, even something that seems terribly wrong and injust in our nature like dying in childhood can be seen in different ways.

    Perhaps there is even a third tribe, who coming to lern of the first think that it is a noble choice for the gods to take so many children such that they will readily sacrifice there own."

    Now in my book the failure to recognise that autism is a social construct is playing into the enemies camp.

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  15. And just because Lovaas agrees on some point does not mean that the idea is wrong, for all I know Lovaas and I might agree that Beethoven was a very good composer, we might even agree on the best way to go about painting and decorating.

    this is fallacios argument of the worst thought to have demonised a man so much to the extent that even when he says the sun rises in the morning is to invite disagreement with that statement as if ABA were somehow in the background causing that to happen.

    Michelle seems to have a problem with any idea that does not fall within her domain of interest or specialty, but even I am not foolish enough to declare that whilst I disagree with most of her so called science, that I would disagree with everything she has ever said or done.

    I am tired of Michelle criticising the rest of the disability rights community because of the actions of one section, I am tired of "people"
    (yes that is more than one there so don't take it wrongly)
    making autism into only the thing that they rigidly declare it to be.

    Our argument out there is with society, with justice, with education and yes with the scientific establishment who continue to categorise us into a construction that says we are less equal or worthy, as that is the road to extermination

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  16. For Joseph, I don't agree with the premise that there is nothing which characterizes autism (if that were true, I would have a lot more spare time...).

    For Larry, if I agreed with the Canadian "disability rights" community, I would have to agree with Canada's ABA parents/"autism advocates" (FEAT groups, FOCA, Autism Society Canada, the ABA Petition people, the "Autism is a Debilitating Disease" people, etc). And I would have to agree that I'm a fraud, criminal, etc.

    Well, I realize the second part is something Larry agrees with. But I would have a hard time imagining him supporting Canada's "autism advocates".

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  17. For Joseph, I don't agree with the premise that there is nothing which characterizes autism (if that were true, I would have a lot more spare time...)

    No. I think you don't like the concept because you have an erroneous idea of what it is. Do you agree that there's something real, tangible that characterizes black people, or short people? Still, short stature and race are cultural constructs.

    For the record, unlike Laurentius here, I do believe the research you do is relevant and useful.

    I think it's fine to document differences between groups of people, so long as they are not taken as indications of superiority and inferiority. There are those who'd rather deny and violently oppose the existence of such differences, with good intention. For example, people tend to deny that men and women are different at all, because admitting so may lead to injustice. I don't see that as the right approach to the issue.

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  18. Well Michelle, you are still making these counterintuitive jumps that because what you know as the disability movement in Canada, is pro ABA, that must be the way the disability movement is in the UK and elsewhere. What I see from your descriptions of those organisations in Canada is nothing more than the traditional organisations and patronising attitudes that spawned the disability movement which formed to oppose all of that, using the social model as a tool to do that.

    I do not have a black and white all science is bad, all sociological based approaches are good polarisation.

    In fact I am happy to use the services of a cardiologist, even to allow surgeons to operate on my body and hope that the reserch that has led them to there expertise is not as flawed as most of that in the realms of mental conditions, autism reserch for the most part being an offshoot of pysciatry.

    I also hope that the device those men outside my flat are using to detect a gas leak works better than it appears to given the number of times they have failed to find it else one day I might just go up in puff of smoke.

    You might be amused to lern that today I have even consented to be a lab monkey out of sheer curiosity.(A fault I am as guilty of as you are) In doing that I shall also be a participant observer of the scientific method, in the sociological model.

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  19. Michelles argument about temperature couched with such warnings as Frostbite hypothermia etc is not tenable

    Not all outdoor living people wear the same number of clothes, the original inhabitants of Tierra Del Fuego, a most intemperate clime wore very little.

    The famous case of Victor the wild boy of Aveyron, illustrates that he appeared impervios to cold, and indeed only responded to such notions after having lernt them. He had lived naked through several winters with no apparant ill effect.

    I have seemingly inherited from my mother and abnormally low core temperature. She had in the past been considered to be hypothermic merely upon a temperature reading which was in fact normal for her, suffering none of its clinical effects, likewise you will miss a raised "temperature" when I am ill because the increase in temperature falls within the normal bounds for most other people and is not seen.

    I have driven with my hand rigidly held outside of a car window supporting a camera, in sub zero temperatures at around 30mph attracting wind chill. My desire to hold the camera still overcame any sensation of discomfort and I did not end up frost bitten. (whether it was a sensible thing to do is moot point) I have also walked barefoot over frozen ground and still have my feet (last time I looked)

    Even ones physiological responce to temperature is not a given.

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  20. Cultural constructs can kill, of course. The government executes people all the time.

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  21. And to extend that line of thought, it could be said that the autism construct, as currently constructed, indirectly caused the death of Katie McCarron.

    If you think about it this way, autism advocacy consists of recognizing that autism is a construct that can be molded and shaped so that it's useful to autistics, not only useful to culture as a whole as a scheme to classify 'problem people'.

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  22. "autism advocacy consists of recognizing that autism is a construct that can be molded and shaped so that it's useful to autistics"

    Which currently is the model I am working under. Concepts which arose from society inventing the concept of 20th medical science led to my being labled a misfit, and bypassed within cultural growth that tends to do that to our kind. I am trying to take that back in a different way to which Michelle conceptualises she is taking that back, by staying within a scientific mechanistic model.

    I don't want to change what scientists think when they are doing science, I want to change the way they think about what they call science. Everything human is mediated and that is what they do not realise, that they are cogs in a machine themselves because they neglect the sociology of there profession merely because it is invisible to them on the inside.

    however at the end of the day I don't want science or medicine to define what rights I should have, or the way schools are run as if that can be discerned by any right model, because that is what the proponents who call for ABA are doing.

    Without wishing to offend any wiccans looking in, how should one combat the sort of thinking in Salem, by appealing to the belief in Witchcraft or by appealing to a model of thought outside of that witchraft. Well I see the argument of using science against science as flawed as combatting a witchunt by putting a hex on the witchfinders

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  23. Let me presume that everyone agrees that the traits identified as "autistic" are the expression of some objective physical characteristic of the person--presumably something to do with their brain.

    There are also definitions of autism that are purely cultural or subjective, like this one from Princeton University's WordNet: "n : (psychiatry) an abnormal absorption with the self; marked by communication disorders and short attention span and inability to treat others as people."

    Of course this can only define anything in a context that also defines how to treat people as people, how much self-absorption is normal, how communication is ordered, how all these things are recognized, and so on.

    And then there are the traits themselves, as defined (for instance) in the DSM and ICD manuals by a varying mixture of objective behavioral traits--repetitive gestures, averting the eyes--and subjective impressions such as "lack of social or emotional reciprocity."

    The trouble here, as I see it, is that the word "autism" right now means all of these, the two extremes and everything in between.

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  24. Dammit I seem to get more dyslexic as the day wears on I need to re-edit that post because it is ambiguos

    "autism advocacy consists of recognizing that autism is a construct that can be molded and shaped so that it's useful to autistics"

    Which currently is the model I am working under. Concepts which arose from society inventing the concept of 20th century medical science led to my being labled a misfit, and led to me being bypassed within the culturaland economic growth of that society, which that society tends to do that to our kind. I am trying to take my place back in a different way to which Michelle conceptualises she is taking that place back by (her)staying within the scientific mechanistic model.

    I don't want to change what scientists think when they are doing science, I want to change the way they think about what they call science. Everything human is mediated and that is what they do not realise, that they are cogs in a machine themselves because they neglect the sociology of there profession merely because it is invisible to them on the inside.

    At the end of the day I don't want science or medicine to define what rights I should have, or the way schools are run as if that can be discerned by any right model, because that is what the proponents who call for ABA are doing.

    Without wishing to offend any Wiccans looking in, how should one combat the sort of thinking that led to the witch trials of Salem? By appealing to the persecutors belief in Wwitchcraft or by appealing to a model of thought outside of that witchcraft. Well I see the argument of using science against science as flawed as that of combatting a witch hunt by putting a hex on the witchfinders

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  25. Laurentius,

    You should be able to delete your own post with the trash can icon at the bottom of it.

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  26. The trouble here, as I see it, is that the word "autism" right now means all of these, the two extremes and everything in between.

    That's right. "Autism" is not just what we find in the DSM-IV manual. It's what we have learned it to be. This includes information from the formal literature, the experiences of autistics themselves, opinions of professionals and laypersons. All of this constitutes the autism construct. Evidently, the construct can change, which can also cause its prevalence to change - something which has non-trivial consequences.

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  27. Well I see the argument of using science against science as flawed as that of combatting a witch hunt by putting a hex on the witchfinders

    I tend to disagree. One of the most important scientific principles is that of self-correction. Science should be allowed to find out about the nature of things. The meaning we abscribe to physical reality is a fact of culture, however.

    (I appear to be a social constructionist who believes in science; or a scientist who is into social constructionism.)

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  28. Re Frostbite, etc.

    The "Cold" construct does not cause frostbite. Frostbite is really a physiological effect of absense of heat.

    "Cold" and "Hot" are cultural constructs and mental constructs. They are cultural in the sense that we all have a rough agreement as to their meaning. They are a reflection of physical reality, but they are abstract concepts. They are mental constructs in the sense that organisms have evolved to respond to temperature and to feel these constructs. Animals I'm sure have "Cold" and "Hot" mental constructs in a sense, as they react to both, even if they don't conceptualize them. The reason we have these constructs is precisely so that we can avoid things like Frostbite, and survive.

    "Heat" and "Temperature" are Physics concepts which precisely describe physical phenomena. But "Heat" is also a cultural construct in the sense that we all have a rough agreement that it's something that results in "Hot". In Physics, "Cold" does not exist; there are only levels of "Heat". Absolute zero is complete absense of "Heat", and you don't even have to get there to get frostbite.

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  29. "Looks like you nailed why autism can be described as a cultural construct, without stating that explictly:"

    Thanks, Joseph. I have been thinking about social constructionism at the time but I was trying to work within a paradigm that clinical personnel could find accessible, and sadly the whole social constructionist framework (at least here in Finland) is not well accepted yet.

    "Did dyslexia exist before the invention of writing?"

    Given what it actually means, not really.... because it only has meaning in a literary culture (ie.e, one in which the major-emphasis medium is written word).

    David N. Andrews BA-status, PgCertSpEd (pending)
    (just in case 'he whose name is unworthy of mention but whose mental state is laughable' doesn't believe I wrote this! LoL)

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  30. Note: Check out an entertaining illustration by ballastexistenz on how the impairment construct works.

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  31. Here's a thought. What if the broader autism phenotype is a social construct, with autism, or at least some variations of it, being a comorbidity of the BAP with a prevalence that positively correlates with BAP characteristics?

    For example, my daughter's cognitive processes may be representative of those of the BAP, but her absence of spoken words, despite clearly understanding these words, wanting to be able to speak them, and being part of a species usually capable of speech, suggests SI issues that may have an underlying medical cause (genetic or other, so we don't get hung up on a particular etiology).

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  32. Thanks for this lucid discussion of "cultural construct."

    I would send any student of social theory here to get the message that just because something is socially or culturally constructed doesn't mean it isn't "real".

    Humans make things (ideas, buildings, cities, universities, traditions, the DSM-IV) and these things make us.

    The good news is that since we make these things, we can unmake them, or make new things that will, hopefully, work better.

    Thank you.

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  33. Hi Ian,

    I think etiology and the way we interpret the expression of etiology (i.e. the "symptoms") are two different things.

    For example, it's clear that "short stature" is a cultural construct. But a cause of short stature might be Lerí-Weill dyschondrosteosis, which precisely describes a physical phenomenon which is not a cultural construct.

    Similarly, Fragile-X and Rett's describe physical phenomena which are not cultural constructs, but the way we interpret the behaviors that result from these physical realities is culturally constructed. Fragile-X are Rett's are an important part of the autism construct, even though they don't refer to constructs themselves.

    Disability has been described as a social construct. This doesn't mean that its causes (e.g. eye amputation) are social constructs. And it doesn't mean that it's impossible to deal with causes in some way.

    The idea of social construct is sometimes taken to mean "not a disability" or "not a disease". The problem is that disability and disease are constructs themselves.

    Let's say a cause or causes are found for the "homosexuality" construct. Before 1973, these might have been considered pathological causes in need of treatment. Today they might be considered interesting curiosities.

    It's kind of confusing to me, I must admit. I think social constructionism provides a different sort of framework to think about these kinds of things. And it's also a tool for minorities, liberation and rights movements.

    (As a side note, I understand late-talking kids with good receptive language tend to have good outcome, but I can't find the reference for this).

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  34. Its clearly time to introduce Bishop Berkeley (rhymes with Bark lee) and the trees, how remiss of me to leave that out for so long.

    A thing can ostensibly exist a long time before it is named or known about, as indeed animals existed before we did (that is not even contradicted in the Bible) however we humans gave things names and in so doing constructed what the names connoted ever after.

    Oxygen has been here to breathe and radiation to poison us, now these things did not have names but once they were known about our attitudes toward them are entirely constructs, for instance fear of radiation association with terrorism nuclear war etc, and oxygen has become a metaphor, for instance starving an idea of the oxygen of publicity.

    The human characterists which give rise to every condition from short stature to BAP have been around a long time, but the way we describe them the way we deal with people who are observed to fit the descriptions we give to them, that is all social.

    blindness even is a social construct, need I refer you to HG wells story for an example of what that means.

    Now where an erth are all you people when I cease to think of you calling you back into being :)

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  35. One more thing for Ian...

    The prevalence of speech problems is quite high. See, for example, Beitchman (1986). Note the year.

    That's prevalence in the general population. Now imagine what the prevalence of speech disorders might be among children of parents who score 32 in the AQ Test :)

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  36. Another recent blog post relevant to this discussion is Autism Diva's Alison Tepper Singer and the Rett Girls. It clearly illustrates how the "devastation" of autism is a culturally constructed phenomenon.

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  37. Hi Joseph,

    I’m not quite sure whether we’re suggesting the same thing or not.

    You wrote:

    ”For example, it's clear that "short stature" is a cultural construct. But a cause of short stature might be Lerí-Weill dyschondrosteosis, which precisely describes a physical phenomenon which is not a cultural construct.”

    I’m trying to get at the same thing, but via potentially a different look at the relationship between the BAP and ASD. To be clear, this is a hypothesis that I'm suggesting. I make no claim that it is proven, or even correct.

    Let’s for the sake of argument consider the BAP as a social construct that is defined as the presence of certain characteristics. The degree to which each of these characteristics exist within individuals is on a spectrum. Once a certain set of characteristics exist and to a sufficient degree, one is considered part of the BAP. Therefore, the BAP is a social construct, applicable once the number and ‘strength’ of the characteristics cross a certain ‘socially’ defined line.

    Now, what if the presence and strength of those characteristics also increases one’s vulnerability to a medical condition, but does not cause that medical condition. For example, lets say (again hypothetically) that the BAP characteristics are driven by an increase in local over global processing (and connectivity) within the brain, but in all cases - from absence of the characteristics to 100% manifestation of the characteristics - there are still sufficient global connectivity to allow processing to be considered fully locally and globally integrated.

    Now let’s consider that condition ‘x’ (a particular etiology, potentially one of many) reduces the brain’s ability to make global (but not local) connections. In individuals with sufficient global connectivity – those not part of the BAP - the reduction in global connectivity does not significantly impact global processing. But in individuals with an already lower degree of global connectivity – those part of the BAP - the impact of condition ‘x’ may be sufficient to significantly impact overall brain integration, hence SI issues that appear to magnify the BAP characteristics. In this case, BAP is a social construct, and both BAP and “BAP plus condition ‘x’” are examples of the diversity of human thought and are still on a spectrum, but only “BAP and condition ‘x’” together create what some will describe as an ‘impairment’ – e.g. lack of speech or motor planning issues – sufficient to meet the DSM-IV criteria.

    In the above hypothesis, the BAP can be a social construct but DSM-IV autism could still be ‘caused’.

    Regarding the Beitchman et al link, it is really surprising (and interesting) to me that the rate of ‘impairment’ was found to be higher among girls than boys. I would have assumed the opposite direction in the results. I’m refraining from making any comment about Ottawa-Carleton itself, which would be the equivalent of you making a comment about Washington DC. I guess I could fairly suggest that AQ scores in the region (as the seat of government and major components of policy-making and the bureaucracy) could be higher than average. Regarding my daughter’s speech issues, my AQ score was 38 (with no speech issues, and early speech acquisition).

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  38. Ian,

    I think what you're saying is that a physical factor might make someone more autistic than they otherwise would have been. Sure, I don't see a problem with that.

    Buy you also seem to be suggesting that an anomaly such as speech delay should normally not exist in humans, unless external factors are at play.

    Maybe. But external random factors are always at play. De-novo mutations might be in this category. If you could test the IQ of early humans, you might find a normal distribution of scores, and similar rates of mental retardation and giftedness (conditions which are statistically equally abnormal). If you were to graph age of language acquisition, you might also find a normal distribution. Naturally, a kid who is in the bottom 1% of the population in language acquisition will be considered very delayed.

    Why should a kid be speaking by age 2 or 3, BTW? What is the reason for this expectation?

    Why should a kid be expected to walk by age 1, when in other species walking happens right away?

    Regarding the Beitchman et al link, it is really surprising (and interesting) to me that the rate of ‘impairment’ was found to be higher among girls than boys.

    That's probably because autism is not the only thing that's correlated with speech delay. Plus much of the over-representation of boys in autism is likely cultural.

    Regarding my daughter’s speech issues, my AQ score was 38 (with no speech issues, and early speech acquisition).

    I'm sure you know that the average AQ score of an HFA/Asperger adult is 35-36, and that the test has pretty good sensitivity at a score of 33? (Of course, you might not meet threshold criteria if you don't see yourself as impaired in any important way.)

    I'm not sure why some autistics are able to develop early speech. I was an early talker, but my dad was a late talker. My dad is considerably less autistic IMO.

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  39. Incidentally, I could never grasp the precise difference between concepts such as "cool" and "cold". Maybe that's an autistic thing.

    Maybe the autistic thing is expecting that there should be a precise difference between them. I don't think most people, myself included, perceive a sharp boundary between the two; I certainly don't have a systematic way of deciding "cool but not cold" or anything similar; it's just a subjective and variable perception. I still find the concepts useful.

    Most diseases are not cultural constructs. You either have cancer or you don't.

    Actually, the grouping of several different diseases under the label "cancer" really is a cultural construct. Why, for example, is basal cell carcinoma of the skin, a rather minor dermatological problem, put under the same umbrella as some rapidly-fatal diseases? Hierarchies and taxonomies have no concrete existence in the physical world; they're constructs we create for our own convenience (if you go by phenotype, chimps are more closely related to gorillas than to humans; if you go by genotype, chimps are more closely related to humans than to gorillas. No facts about the physical world can tell us which basis is "right").

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  40. Hi
    I think that in a final reading, all kind of disease involves some kind of cultural construct to deal with.
    There are different aspects of any disease or medical condition. Private and public. In terms of public aspects, cultural construct is another component, with also medical and parental attitude and interpretation of symptomatology of all kinds. Especially if the symptomatology is behavioral and the physical symptoms in terms of physical pain or physical disconfort are not easy to communicate, there are a lot of room for sociological/pshycological theories to flourish as alternatives to not so known biological aspects to consider- without the denying of the importance of emotional/phsycological aspects in disease.
    However, again and in agreement with Ian, the consideration of the cultural construct around medical conditions does not discard physical/biological contributions that can impact negatively the life quality and are important to consider at an individual level
    (IMHO).

    MAría Luján

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  41. However, again and in agreement with Ian, the consideration of the cultural construct around medical conditions does not discard physical/biological contributions that can impact negatively the life quality and are important to consider at an individual level
    (IMHO).


    Hi María. That's why the disease construct exists. It's so that ways can be found to improve quality of life and life expectancy. Life expectancy I don't believe is an issue in autism for the most part (except for accidents, and murders). So the question that remains is whether the disease construct helpful in improving the quality of life of autistics. This is the essense of the disagreement between the biomed community and the neurodiversity/acceptance community.

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  42. There's another aspect of autism that goes beyond the "disability as social construct" theory.

    It's the fact that some autistics reportedly like being autistic, and would prefer not to be cured of their autism. This is a unique aspect of autism which is not as common in other disabilities. Admitedly, not all autistics could be said to share this point of view (although most of those who are outspoken on the internet seem to).

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  43. Hi Joseph
    I understand your point and respect the right of autistic adults to be heard and considered and respected.
    My point is I am not talking of particular treatments as ways to "remove" the core of the autistic person, but to improve his/her life quality. When we talk of life quality I consider different levels

    a-Public levels, related to all the aspects (sociological and cultural) about how autism is seen- in educational, social and work fields-and how the special needs of autistic people of all ages are actually not taken into account.
    In this sense, the unique abilities and the different ways of learn/work/interact of autistic people must be known and more widely considered therefore more opportunities would be possible-in a world more inclusive for all.
    I think that cultural changes in terms of acceptation of differences would be surely helpful. My point is that they do not exclude all the other field.
    b-Private levels, about all the familiar relationships involved ( where aceptance and love are extremely important) and the medical decisions related to physical problems (that can affect negatively because of disconfort or pain or other problems).
    I do not see these medical decisions -that can be part of the biomedical field but also considering all the options of medicine- for me and in the consideration of my son- as a way to remove the autistic person he is. I see the medical intervention as a way to improve the life quality of the autistic person he is, what is different, in a non sociological level, but a private one-because the decisions are done in the field of family with medical support from doctors. In this sense we, parents, have an enormous responsability for me.
    Both fields, public and private, affect each other.

    María Luján

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  44. María Luján wrote:

    "I do not see these medical decisions -that can be part of the biomedical field but also considering all the options of medicine- for me and in the consideration of my son- as a way to remove the autistic person he is. I see the medical intervention as a way to improve the life quality of the autistic person he is"

    I'm in total agreement with María Luján on this.

    Joseph wrote:

    "I'm sure you know that the average AQ score of an HFA/Asperger adult is 35-36, and that the test has pretty good sensitivity at a score of 33? (Of course, you might not meet threshold criteria if you don't see yourself as impaired in any important way.)"

    In my case I'm not HFA (I clearly failed to meet the diagnostic criteria). Asperger is another matter. I don't think I'm AS, mainly because, as you said, the diagnostic criteria seems to require some sort of impairment, and I've never felt impaired (defined as more than feeling slightly socially inept on some occasions).

    Having said that, like María Luján, as a moderate bio-med I'm not out to remove the autistic person that my daughter is. But I do have concerns with her medical issues (ones that people may or may not see as comorbidities, or perhaps one day as subtypes of autism) and some (not all) of her 'difficulties' - e.g. SI issues and lack of speech despite wanting to talk. I also see medical intervention as a way to improve the quality of life of the autistic person she is.

    I believe that in at least some cases it is these medical issues that may be the difference between the BAP (me) and autism (my daughter). Some may say that the medical issues do not affect or change the diagnosis, but I haven't seen the research - as distinct from opinion - that proves this to be the case. And while we're waiting, the medical issues are worth treating regardless of their diagnostic impact.

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