Whichever way you look at it, it’s still autism.

Or is it?

Introduction

In case people are not aware, I am a media studies graduate. Now media studies might not have the academic reputation that engineering has, but it is no less analytical for that, for what it has taught me is how easily we are fooled by what appears to be. How often, in the words of Marshall McCluhan, we mistake the [i] we mistake the “medium for the message.” Whether there can ever be any true message beneath the veneer of presentation I leave for others to decide, for what I am concerned with here, is the way that the underlying message of those who have claimed to be the discoverers and uncoverers of autism, has been distorted and manipulated by people who want to portray a very specific image of autism. It is all to do with perspective, and perspective is just a fancy Latin word for the direction from which you look at something.

Besides being a media analyst, I also lay claim to being an amateur psychologist, not by virtue of any paper qualifications but in ways that will become evident from what I have to say later on. For if the rational attempt to construct the way that others think in order to better understand how they relate to the world that they make around them is not psychology I wonder what is? In that I am constructing no less than a theory of mind, and as you (who are not me) read what I (who am not you) write, you are doing the same, listening to evidence, looking at others perspectives and weighing it up in your own minds.  - Hey look we not only are, but we think! What your conclusions will be will be yours alone.

At this point in my Autscape[ii] presentation, I showed a short publicity video made by the organisation “Cure Autism Now”, to show how they were using media to construct a particularly perspective on autism, that I and my audience did not approve of. Just as an illustration of how these things can be manipulated in order to attract funding for their objectives.

With its well composed shots, and sentimental background theme the video attempts to manipulate the viewer’s mood to prepare them for the message. An adult narrator speaks of his autistic brother, intercut with what appear to be childhood scenes, all pointing out the autist's difference and isolation, yet constructing that as loss, compared to the sociable activities of normal children. It seems to show arrested development with the narrator comparing his own desires to start a family with the seeming impossibility of that for the disabled brother who is shown still to be in his own world and obsessed with blowing bubbles, the summation of a lifetime’s effort to teach him communication.

Personally I do not think is either friendly or useful to those of us who are on the autistic spectrum, laced as it is with emotion, from the soft focus of the shots, the imagery, the choice of narrative and most of all the bathetic song. It constructs an image that something is lacking in autism, and that the overall tone of the piece is sadness and regret that the autist does not move on or grow up, whilst the neurotypical does. The message of sadness and regret the stage setting for a blatant appeal for money, to fund a cure so that this carefully constructed tragedy need not be acted out in future times.

Now the fact that I am capable of speaking to an audience and of making and directing videos of my own, using the same  expertise used to craft the “Cure Autism Now” video, demonstrates that there is a lot more to autism than that video would have us believe.

 Therefore it is my intention to explore in this paper, the way in which various people have laid claim to being able to differentiate "true" autism from the autistic culture that is celebrated in events like Autreat [iii] and Autscape.I will go on to examine the implications of that for all sides of this complex thing we call autism, using the cure as a rhetorical starting point.

I shall nonetheless try to maintain some academic detachment in order to show that no way of looking at autism contains absolute truth  and that what should matter to us is our own right to define autism from within as a culture we can share rather than a label or diagnosis that is given to us and is as readily taken away by those who do not like it when we talk back.

Even so when I talk of defining autism from within, there is still relativity as it is inevitable because of our individuality that our own self definitions will sometimes be as skewed as those obsessed with a cure for autism (whom we call "curebies", as I don’t believe for one moment we are any less biased than the neuro-typicals, as we can see in the writings of Temple Grandin’s [iv] or Donna William's, [v] and in some of the other weird and wacky theories to be found on web sites that we have formed ourselves as creation myths for our being.

Autism as Urban Legend

I have in my last statement effectively declared myself to be a post modernist, a phenomenologist in saying that I have no greater claim to absolute truth than anyone else.

That however is to me one of the most important statements that any of us can make, and it involves a degree of self - an ability that is so often not accorded to us, by those who rigidly define autism as this or that, or who divide us into camps, Asperger’s [vi] and Kanner's, [vii] high and low functioning, educated and uneducated, sceptic and eccentric.

We can look at autism as it is understood today and see that in spite of the growth of knowledge there is not even any consistency between the way that clinicians perceive it amongst themselves. Researchers theorise about it in firmly entrenched interest groups and so do parents who lay claim to a closer understanding of their children. We even argue amongst ourselves mirroring those very same divisions.

In spite of that I do believe there are certain historical writings that stand as road marks on the way to this morass. However if we take that analogy as having any meaning and regard the writings of Kanner, Asperger, Wing, [viii] and others as signposts on that road, we have to consider that a sign put up with an incomplete knowledge of the terrain or influenced by local conditions is always subject to revision.

It is a post modernist paradigm that there are no longer any absolutes in science, for the disciplines of sociology, if not those of psychology itself, inform us that no researcher can ever divorce themselves from the input that gives rise to their speculations. Not only are they dependant upon the quality of the data they have available and only able to reason by past reference (they cannot see into the future and make use of hindsight as I can here) but they are inevitably influenced by the subjective landscape they practice in.

 That is to say both their knowledge of and their reaction to their peers in the field as well as being influenced by the way in which they came to receive their present knowledge in whatever academic tradition they were schooled in. It is no accident that both Asperger and Kanner adopted the earlier term Autism from Bleuler [ix] as they had a common cultural and academic heritage that predisposed them to the writings of Bleuler and that school of psychiatric investigation that gave rise to Bleuler in turn.

If we take the perspective of the functionalist school of sociology on the current state of description of the Pervasive Developmental Disorders (PDD’s) or Autistic Spectrum, we can say that the attempt to ground them with dictionary definitions in the dual systems of ICD [x] and DSM [xi] have occurred because there has been a need for them to occur.

Of course there will then be argument as to how the need came to be perceived in the first place and that will vary; from the perspectives of those who reason that an increase in the phenomenon has taken place calling into being its need to be defined more regularly rather than as the rarity it once seemed to be, to the views of others who would say that it is changes in society that have made the autism more apparent,  Whilst there are others who would argue that the definitions exist simply because the academic and clinical conditions have driven an ever increasing desire to define the phylogeny of psychiatric conditions.

It may be that more than one factor is apparent, and I incline to a combination of the last two. It being at some point immaterial as to whether there has been a real increase, the apparent increase is evident as an artefact of the appearance of these disorders in the catalogue (Says law in economics that supply brings its own demand) and the increased attention that has been drawn to them.

Kanner vs. Asperger

One particular persistent “Urban Legend” viewed over the autistic horizon is that Kanner's syndrome is the paradigm of classic autism and that all other forms are variants or dilutions of this.

The later appearance of Asperger’s syndrome as a diagnosis, the arguments as to whether it justifies the same levels of intervention or services as what was formerly considered to be autism and it’s the way it reads in DSMIV as “autism lite” seems to suggest to those desire to keep autistic purity at the “severe” end of a notional linear spectrum that the manual gives substance to their argument.

However analysis does not bear this out. The debate has raged and continues to rage over as to where it fits  ever since Lorna Wing mooted a wider spectrum and drew attention to Asperger’s work,. The practical suggestion of a possible syndrome named after him was not so much drawn from his work as much as to remember his hitherto forgotten  contribution to the literature of autism, However that remembrance  has in a sense called it into being as a separate syndrome.

The way it is described in DSMIV is a social construct borne of committee decisions and a desire to leave open the debates at the time as to whether Asperger's Syndrome exists on a Schizoid, Schizotypal axis or as a continuum and broader phenotype of autism.

Leaving aside the cultural reasons why Kanner has hitherto received more prominence and become the Grand old Man of Autism as the more senior of the two in the urban legend we have to consider certain facts.

Kanner’s and Asperger's samples were both small in consideration to the population we now know of.

Notwithstanding their common middle European heritage, subsequent geographical separation of where they ended up in practice  meant that there were cultural differences which affected the way their papers were written up, and cultural factors determining both the interpretation of the behaviours described and the way those behaviours manifested themselves given the different social milieu.

If anything, what is remarkable about both of their observations, despite the two men’s later trajectories and beliefs, is that given these differences there is a remarkable degree of correlation between these two seminal research papers, enough to indicate that they were dealing with small samples of a much larger and disperse population. Indeed the global and cultural separation of the two in the 1930’s and 40’s would tend to suggest that the phenomenon they observed and described was a real and global one

The categorisation of DSMIV and the creation of Asperger’s syndrome as a separate clinical category has merely confused matters. Gillberg  [xii] is on record as stating his opinion that none of Asperger’s patients would satisfy a current diagnosis of Asperger’s Disorder (DSM version) and all would come into the description of Autistic Disorder. Likewise Atwood an erstwhile populariser of Asperger’s syndrome has declared that the only difference between it and High Functioning Autism is the spelling

Similarly a longitudinal study of Kanner’s patients would indicate they more readily describe a broader phenotype of functioning ability than those who seek to confine autism to within a strictly low functioning, non verbal paradigm for what appear to be largely political and social reasons I will elaborate later. (evidence in Sainsbury [xiii])

Finally in the descriptions in DSMIV itself Asperger’s Disorder is identical to Autistic Disorder except in that Autistic Disorder includes additional criteria for communication.

These criteria appear to have nothing to do with cognitive development, and are broad enough in my opinion to include practically everyone who currently bears the separate diagnosis of Asperger’s Disorder.

The relationship of Cognitive Capacity (a term I prefer to IQ as being accurately descriptive of what IQ attempts but fails to comprehensively map) to Autism or AS is another red herring.

The criteria of Asperger’s syndrome seem specifically to have been written to exclude very low IQ, and without reference to any real knowledge of what is being described.

It is merely a sleight of hand or as Film maker Alfred Hitchcock would describe it a “McGuffin”

It is arbitrary. Asperger’s syndrome as “high IQ autism” is not borne out when one considers measured IQ’s of 70 as the starting point. I do not know a figure for my own IQ, perhaps Professor Simon Baron Cohen [xiv] has that somewhere but I think it is irrelevant to understanding of what is at the core of autism in that the possession of greater or lesser cognitive capacity is not determined by the autistic traits per se, and that the existence of greater of lesser cognitive capacity does not determine anything about the autistic traits either other than ones eventual ability to mitigate their effect. Glenys Jones, [xv] from Birmingham University, for example is on record as having stated something of this sort.

Nonetheless the likes of Professor Gillberg continue to obfuscate and confuse the issue. he states in a recent textbook 75% percent of all autists are retarded. When I challenged him that he had contradicted his statement he made to the “World of Difference” conference in 2002 where I herd  him declare that  the statistics were the other way round he employed a piece of classic political doublethink and said that he was referring in that instance to both disorders combined, whereas in the book he was referring solely to autistic disorder.

The uses to which the terminology is put

Now let us look at how people use these descriptions not as objective facts but as building blocks in a mythology which is as much a mental construction as the much vaunted theory of mind.

For all humans, making sense of the world using our mysterious perceptions is what we do. We construct models of the external world, and then attempt to verify them from day to day by the closeness of fit. We make a world to suit us and call that fact.

In examining other people’s false belief we always forget to question our own. But as Oliver Cromwell famously said “I beseech you in the bowels of Christ, think it possible you may be mistaken!”

Autism is a discourse of empowerment and disempowerment. From the moment we are born we are disempowered, the human animal is reliant upon its parents for sustenance, and warmth. We all come ill equipped compared to the foal that stands on four legs soon after birth.

Now what happens in our case so often is that the child nature is extended in the eyes of the parent, or authority, in that because of our difficulties we are constructed to be incapable of full adulthood. Those who see only what they call the low functioning end of autism see it as a threat that there can be any other kind, they actually feel that our self advocacy disempowers them in their own reconstruction of a world that has failed to give them what they see as there right to a perfect child, the model of themselves (for they will always see themselves as perfect and measure everything as distance from that)

They see autism as tragedy and they will not be denied their tragedy, they will be unaware of the social and psychological processes that shape this construction and build the facts around the construction, and facts some of them will be, objectively scientific by the paradigm that distinguished them to be so, handed down by white men in white coats, the very paragons of western authority and sagacity. They do not see that these very paragons are imperfect too, that they in turn construct, and each of them takes only what they see to be useful, not only rejecting the rest, but as with the zeal of a religious convert rejecting it as anathema and heresy, so dangerous that its proponents are from the very devil himself, and so we are demonised because we stand in the way of this world view. Not very enlightening or promising is it.

I have already spoken of what the academics have discovered and alluded to the fact that the academic community who have come up with these theories, which I freely dip into and chose as much as “curebies” do, are as much influenced by the way that academia works, as objective truth. Scientists too have to play a social game, they have to go through elaborate rituals of qualification from lower to higher before they can ultimately claim the right to propagate what they then call knowledge through the time honoured means of the peer reviewed paper.

If you do not have the requisite authority given you by having been in this system, then you are not regarded as a peer and so cannot criticise what is published within the system. You are, as I am, an outside commentator. It is like a freemasonry in that you begin as anyone who has been through GCSE’s, A levels, degrees and so on (or their American and foreign equivalents) knows, with very basic general knowledge. It is not so much learning the subject but learning the rules that guarantee you the right to progress to the next level where you spend time questioning and deconstructing the very notions you have already learnt.

Academics and Politicians do not see eye to eye, they have very different concerns, and so the "curebies" are the politicians in this world, they seek to manipulate the “facts” to suit what they want. The academics in turn, play to the politicians for the funds and study only those things that are economically viable. There is effectively a market in these things. Knowledge is a commodity and it is a very costly one indeed as anyone knows who wants to go to University these days.

Where do we fit in?

If autism is a triad, then representation of it within culture and society is a triangle, and parents form one corner, academics another. However using the analogy  the triangle can have no base without us, to give justification to the other two sides. There have been back and forth arguments that there is an autistic culture developing parallel to the Deaf culture which was transmitted through sign language learnt in a largely segregated community.

Martijn Dekker [xvi] was perhaps the first to write a paper on it, but there have been hints of its existence since the formation of Autistics Network International [xvii] and before that even.

For those who adopt an autistic culture the Internet is our equivalent, our college as it were. This gives the lie to those who would contest that autism as a disability because it effects communication and socialisation cannot allow a culture to form as it is definitionally impossible.  [xviii]

Now I would not say that this culture is a universal agreement of values, no culture is. It is certainly a very argumentative culture from what I see, with different models of autism and disability traded, from separatist “aspie” supremacists who think we are an evolutionary advance guard to those who want to build bridges with other disability cultures such as social model theorists or psychiatric survivors. There are those who accept the divisions and those who reject them, not to mention those who will rewrite and create new divisions.

What makes it a culture is not so much agreement on values, but the fact that there is communication and exchange using a form of language that has escaped beyond the internet culture and into to the academic and parental one, with terms like neurotypical and neuro diversity being understood well beyond the narrow group of people who first started using them. Parallel in a way to the way that the terminology of the Internet is now becoming main stream.

In fact considering that the parental "curebie" faction is engaging us in a polemical discourse is a tacit acknowledgment that our culture exists and indeed even when denying us authenticity they are often borrowing our terminology and modes of expression. They too are part of autistic culture, it is only the academics that seem in part to have a classical aloofness. How ironic, they are perhaps more autistic than the two sides of the equation who live autism, ourselves and the parents, who may well often in there fanaticism be autists in denial themselves.

It is not a satisfactory state of affairs, blunt opposition cannot really achieve anything long term as all the energies of both sides are locked in a life and death struggle like two opposed political parties as the intellectual battleground we both seek to occupy in the opinions of the outside world, swings violently between the two.

We need to be sure enough of our culture not to pursue these battles all of the time, but to try and win the hearts and minds of those who both sides often seek to draw into the argument the academics and researchers.

We need to be allowed to prove our worth as academics, not only in the psychological disciplines but also to draw on the disciplines of critical analysis, philosophy, media studies and even economics to show that Autism is far from being a simple medical phenomenon with its boundaries re rigidly kept by any of the three sides of the triangle I described earlier.

We need to be sufficiently credible to claim our own cultural rights to self definition in the world and to make autism a word that is understood to mean more than a diagnosis.  In doing that I fear that many will say we who are able to do it are declaring a sort of UDI (unilateral declaration of independence) and further proving to those who have a narrow tragic definition of autism that we are not truly autistic.

Do parents of blind children deny that David Blunket is blind because he can function as a government minister (when to begin with Blind people were denied the right to representation in the societies for there own welfare on grounds not so dissimilar as I have heard argued against me taking part on the board of the NAS, [xix]

Or do parents of deaf children deny Evelyn Glennie is deaf because she is a musician, a fact which implies as much of a contradiction as the thinking talking autist does to the cure obsessed individual. She is not cured of deafness anymore than I am of my autism.

No, we have to realise that we are only one part of a greater autistic phenomenon and not isolate those people who do not fit in our discourse. If we do we are not better than the parents and "curebies" who deny us. We should use our inside understanding of autism not to say we are better than any other autistic, whether that be somebody whose intellectual and communication skills would make this text of mine completely unintelligible, or be that someone still on the outside of emergent autistic culture, like the many students I meet, still finding out that there is more to there own autism than there parents teachers and doctors allow them.

However I could go on an on, and at some point I have to draw to a conclusion, and what better way to do that than by offering my own, answer to the media clip I described earlier. This is my autistic life passing before your eyes in a flash. The message I hope it portrays is the total opposite to the clip I described to you at the beginning of this presentation, positive but also true to life, at least one particular life out of the many which is mine. http://www.larry-arnold.info/Video/roadnottaken.mpg


[i] Marshall Mcluhan (1911 – 1980) Professor of English Literature and media pundit whose commentary on new technology effectively spawned the new academic discipline of media studies

 

[ii] Autscape – An event organised by and for people on the autistic spectrum

 

[iii] Autreat – The US version of Autscape

 

[iv]Temple Grandin – Well known autistic author and speaker

 

[v] Donna Williams author of “Nobody Nowhere” and subsequent publications

 

[vi] Hans Asperger (1906 –1980) Paediatrician and author of Die 'Autistischen Psychopathen' im Kindesalter 1944

 

[vii] Leo Kanner (1894 - 1981) Psychiatrist and author of Autistic Disturbances of Affective Contact 1943

 

[viii] Lorna Wing  Psychiatrist and Author of  Asperger’s Syndrome a Clinical Account 1981

 

[ix] Eugene Bleuler (1857 – 1940) Influential Pscychiatrist responsible for naming Schizophrenia

 

[x] World Health Organisation - International Classification of Diseases manual (various editions)

 

[xi] American Psychiatric Association – Diagnostic and Statistical Manual (various editions)

 

[xii] Christopher Gillberg Professor of Child and Adolescent Psychiatry at Gothenburg University and St Georges Medical School London

 

[xiii] Clare Sainsbury Martian in the Playground pages 122 – 123

 

[xiv]Simon Baron Cohen Psychologist and director of the Autism Reasearch Centre, Cambridge University

 

[xv] Glenys Jones Lecturer in Autism University of Birmingham

 

[xvi] Martijn Dekker Autistic activist, founder of Independent Living on the Autistic Spectrum internet fora.

 

[xvii] Autistics Network International , an organisation founded by Jim Sinclair

 

[xviii] Generation Rescue, and example of the hyperbole of  the “curebies”

 

[xix] the National Autistic Society of the UK.

 


In memory of Tony Kay


 

Copyright 2005 Laurence Arnold
This page was created Saturday November 5th 2005