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About The Author
Laurence Arnold
University of Birmingham
United Kingdom
Larry
Arnold is currently researching video as an educational tool in autism at the
Autism Centre for Education and Research at the University of Birmingham.
He
is also known as a prominent self advocate and the first autistic person to
be elected onto the board of the National Autistic Society of the UK
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Home > Vol 1, No 1
(2012) > Arnold
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Autism, its relationship to science and to people with the
condition
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(Adapted from an Essay, by Larry Arnold)
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Abstract:
This short paper was originally an essay
for the Birmingham University School of Education, Web based certificate
in higher education, however it has since had an airing on the internet.
It is an important paper because it approaches the notion that the
diagnosis arose at the time it did because of the historic processes that
preceded it, being published online more than a year before Nadesan made
similar claims in “Constructing Autism” The Author feels it is important
to acknowledge the fact that although autistic commentators have been on
the cutting edge of theory they have been largely sidelined from the
academic press because of the imbalance between the cultural capital of
non autistic academics and the mainstream of science and the humanities
who have greater access to academic publishing.
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Autism, its relationship to science and to
people with the condition
By Larry Arnold
1. What is a diagnosis, a
historical perspective?
To begin with I will take a historical perspective in order to understand where
terms like Autism, diagnosis, and syndrome have come from.
We have to suppose if we are to take the study of autism seriously that there
is an entity or phenomenon that can be so described and that it has
sufficient coherence and exclusivity to define the group of people we are
concerned with.
Uta Frith (1992) in Autism understanding the enigma
attempts to discover a historical continuity to what we now understand as
autism, by looking at records and legend (e.g. The changeling) and with
regard for the historical context of the report extrapolating from her
current understanding.
Diagnosis on the other hand proceeds from an understanding that there is a
sufficient commonality of opinion that can be expressed in an authoritative
way by those who are charged by society to make such decisions, namely at
this present time, the medical fraternity. It is nonetheless a specifically
Western European perspective that arose within the universities of Europe in
an academic/scientific culture of peer referenced papers.
Psychiatry as discipline largely arose during the later
19th century, proceeding from the impetus of earlier scientists such as Carl
Linnaeus (Blunt, 2002) who defined modern notions of phylogeny which bespoke
the desire to label and categorise everything. Psychiatrists like Kraepelin
(1881 – 1893) and Eugen Bleuler (1911) began to dispute the nature of madness
removing it from the realms of philosophers such as Hume (1739) and Kant
(Gregor trans, 1997) into the medical
sphere.
From an alternative perspective it is a sociological
phenomenon which cannot be separated from the culture we live in (for example
appropriateness of behaviour could be seen differently according to who was
defining the behaviour).
2. The history of Autism as a medical term
It was Bleuler (op cit) expanding on notions of
schizophrenia or “dementia praecox” who first coined the term “autism” in
1911 to describe a particular kind of self absorption he had observed. Thirty
two years later Leo Kanner (Donellan 1985) adapted the word to describe the
behaviour of a group of children he had observed introducing the world to the
idea of early infantile autism. A couple of years later fellow Austrian Hans
Asperger (Frith, 1992) also used the term to describe something he called
autistic psychopathy. However the fact that Kanner was working in the USA and
Asperger in Nazi Germany meant that Kanner's paper became widely known
effectively establishing a paradigm for the disorder he named, whereas
Bleuler's original usage and Asperger's innovation were largely forgotten.
The study of autism remained bedevilled by the popular
psychoanalytic approach especially by association with Bruno Bettelheim
(1967) who drew parallels between the apparent isolation of autistic cases
and the effects of trauma he had observed in concentration camp victims. It
was not until the seventies that it began to lose this focus as
Bettelheim became increasingly
discredited and autism was recognised as a developmental disorder rather than
a form of childhood schizophrenia (Pollak, 1998) The psychoanalytical
approach had been challenged from as early as 1964 by Bernard Rimland (1964)
who suggested that the origins of the condition were in fact neurological.
3. Current understandings of Autism
Lorna Wing (1993) examining the phenomenon described its
characterisation as a Triad of Impairments. Social, (lack of interaction)
Communication, (impaired use of gesture, semantic understanding etc) and
imagination (resistance to change indulgence in repetitive and stereotypical
behaviour. This description became the basis of the American Psychiatric
Associations categorisation in DSM III R and subsequently DSM IV (APA 1994) a
document not without its faults and struggling politically to find equation
with the World Health Organisations ICD 10 (WHO 1992) a Linnaen (op cit)
Behemoth if ever there was one. There has been much subsequent investigation
and research and newer theories have emerged, notably Simon Baron Cohen’s
(1997) Mindblind hypothesis which posits that autistic individuals are
significantly impaired in forming the hypothesis that other mind exist
compared with neurotypical and even learning disabled children and that
autism is therefore an empathic disorder. This is justified by reference to
the development of eye contact and joint attention in the developmental
process. He has shown through the ‘Sally Anne Test’ that autistic children
are later in grasping the point of view of someone other than themselves when
answering questions about how Sally in the test would react to a marble that
is moved from one place to another when she is out of the room.
Other researchers notably Francesca Happé (1999) and Uta
Frith (op cit) have postulated that autistic people have weak central
coherence that is to say from another perspective an enhanced ability to see
details against an impaired ability to see Gestalts. This is shown in various
tests where the meaning of individual elements in a design or pattern are
confused by the overall resemblance of the design to single entity. This can also
be viewed as a cognitive strength where that ability is valuable. (Baron
Cohen, 2000)
More recently too is the extreme maleness theory which
posits that autism is an over manifestation of largely male traits such as
systematisation (indeed Linnaeus must have suffered from this ‘disorder’)
(Baron Cohen, 2002) This has been subject to much criticism in the Autistic
community as it proceeds from the notion that autism is seen more often in
boys than girls. The same was thought of dyslexia too. Until research by
Finucci & Childs, (1981), and Shaywitz,
(Shaywitz, S., Shaywitz, B., et al. , 1990) showed that the apparent
bias was an artefact of referral generated by cultural expectations of how
the sexes behave that led to under diagnosis in girls
4. My personal understanding of Autism
As a person with autism myself I see the Triad as valuable
but flawed, Wing nowadays speaks of a multi-dimensional model (Wing 1981) and
in reality the Triad is essentially an ‘Occamist’ simplification, the
autistic syndrome involves more than this in my observation, and the
impairment of imagination has been the subject of much debate as more is
becoming known about people like myself. Mind blindness too is often
criticised from the autistic perspective (Tisoncik, undated) however I think
that so long as it is not misunderstood to suggest that we are totally devoid
of and incapable of empathy there is some truth in it. Brain Scanning and
other Research has born out that we look at people differently and tend to
use the same part of the brain to process people as NT’s use for objects
(Schultz, Romanski, & Tsatsanis 2000) Weak central coherence is something
I strongly relate to and anecdotally is borne out from my discussions with
other autists. More recently there has
been speculation that Autism has biological determinants such as weak
immunity, over exposure to toxins, inability to digest certain food types
(Shattock, 1995). which are subject to much partisan debate.
From my perspective the main theories do not necessarily
contradict each other, rather it is like looking at an irregular polyhedron
from different facets, each tells you something but the gestalt requires the
perception of it in all dimensions at once.
I see Wing's spectrum as leading to a literalist fallacy
proceeding from a misunderstanding of what she meant, Autism is not a two
dimensional thing with a high and a low functioning end it is like the
palette of colours that can be assembled from the primaries. To me it is like
a landscape where one can move within a specific territory. It has mountain
tops and deep valleys and if one were to set ones altimeter at average
elevation to fly across it one could not do so without crashing into a
mountain or missing out the valleys.
It has overlapping territories and dual citizenships which are fought over. I
live where it borders with dyslexia and others live close to the territory of
Tourette's for instance, I am sure that genetics and brain research will map
this out where autism is just the coalition of certain characteristics
together none of which in itself is unique to autism but shared with other
conditions like dyspraxia,and ADHD inter alia.
Conclusion
What I have come to understand is that autism is no one
single invariate thing but a collection of traits each manifesting themselves
to varying degree in particular individuals, it therefore follows that the
approach to each individual has to vary according to and be appropriate to
their given needs having regard to the situation they find themselves in and
whatever goals are considered to be appropriate.
I have observed that although there is much in the description of autism that
applies to me, I have grown up in an environment where the cause of these
things, even their label was not known, and therefore have had to adapt
perforce in ways that would not necessarily be thought of as appropriate
today. Like many adults I see autism as much as a maladaption of society to
my specific cognitive style as myself being ill adapted to that society. For
example in discussions in response to professional practitioners I have a
different idea about the importance or even necessity for eye contact.
Those of us who experience the condition as adults and have given it some
thought have developed decided ideas about our self determination as a
cultural minority and are questioning some of the outside perspectives.
Indeed some researchers are finding our insight, particularly with regard to
sensory experience revelatory. Many of these new ideas are being exchanged on
the Internet, as referred to in a fairly recent article in the New York Times
(Blume, 1997) where we are actively building a community of interest with
people like Martijn Dekker (Dekker,
1999) and Jim Sinclair (1993) putting the autistic viewpoint. This too is
where I stand, for I can do no other.
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