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READING CASE STUDIES OF PEOPLE WITH AUTISTIC SPECTRUM DISORDERS A CULTURAL AND MEDIA STUDIES APPROACH TO ISSUES OF DISABILITY REPRESENTATION

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Title: READING CASE STUDIES OF PEOPLE WITH AUTISTIC SPECTRUM DISORDERS A CULTURAL AND MEDIA STUDIES APPROACH TO ISSUES OF DISABILITY REPRESENTATION


1
READING CASE STUDIES OF PEOPLEWITH AUTISTIC
SPECTRUM DISORDERSA CULTURAL AND MEDIA STUDIES
APPROACH TO ISSUES OF DISABILITY REPRESENTATION
  • Mitzi Waltz
  • Autism Research Unit/School of Arts Design Media
    Culture
  • University of Sunderland

2
Case studies and autistic spectrum disorders
  • Historically, autistic spectrum disorders
    (ASDs) have been described, defined, and
    differentiated from other neurological conditions
    primarily on the basis of case studies.
  • Although much empirical data about people with
    ASDs as a population exists, its accuracy and
    applicability to individuals is suspect. This has
    given case studies additional importance.

3
Reading case studies
  • There is a huge literature on medical case
    studies, including historical studies on form,
    content, and use examinations of issues of
    representation and power in case studies and
    critical re-examination of facts presented in
    case studies, particularly in psychology.
  • The examination of case studies as texts can
    enrich existing ways of looking at these
    documents, not supplant or supercede them.

4
Reading case studies
  • Reading medical case studies as texts has
    gained a prominent place within cultural and
    media studies research in recent years, following
    much examination in the field of medical
    sociology.
  • These fields offer tools for situating texts
    within their cultural and historical contexts,
    examining how texts are produced and consumed,
    and examining their socio-political effects. In
    the case of medical case studies, this includes
    their impact on health and disability ideologies,
    policies, and practices.

5
Reading case studies The disability studies
approach
As disability studies practitioners, we
naturally look for how case studies discuss (or
do not discuss) issues of impairment and issues
of social construction. We acknowledge that the
presentation of medical facts is not a
value-free exercise, and watch for what Rosemarie
Garland Thomson calls enfreakment in portrayals
of people with disabilities. We look
specifically for how the voices and views of
people with disabilities are heard, or not heard,
when disability and the lives of people with
disabilities are written about.
6
Reading case studies The medical sociology
approach
  • Medical sociologist Renee Anspach (1988) has
    identified four major features of case
    presentation
  • The separation of biological processes from the
    person (de-personalization)
  • Omission of the agent (e.g., use of passive
    voice)
  • Treating medical technology as the agent
  • Account markers, such as states and denies,
    that emphasise the subjectivity of patient
    accounts
  • Medical sociologists have also examined how
    medical records are written, and used discourse
    analysis to examine how assumptions and power
    relationships are evidenced within them. These
    observations can help us frame our own
    examinations of case studies.

7
Reading case studies Media and cultural studies
tools (part 1)
  • In media and cultural studies, we closely examine
    texts as
  • cultural artefacts. Tools borrowed from these
    fields can also be
  • useful. They include
  • Content analysis usually quantitative analysis
    of words, images, etc.
  • Ideological analysis examination of power
    relations and cultural assumptions encoded within
    texts
  • Discourse analysis critical examination of how
    texts are produced and used, and of the use of
    structure, organisation, grammar, etc. within
    texts (linguistics)
  • Rhetorical analysis Examining the use of
    persuasive techniques in texts

8
Reading case studies Media and cultural
studies tools (part 2)
  • Narratology Examining how narratives are created
    and how they create representations looking at
    disability as storied
  • Genre theory Looking at groups of similar texts
    and examining how genre conventions affect the
    group
  • Intertextuality Examining how texts relate to
    each other (including how written texts relate to
    visual texts, such as images or film), and to
    culturally placed readers
  • NOTE Discourse analysis and rhetorical analysis
    are
  • also employed by medical sociologists.

9
Applying these tools to case studies of people
with ASDs
  • For this project, I decided to apply some of
    these tools to examining a series of well-known
    case studies that have had a great deal of impact
    on autism research.
  • I wanted to see whether using these tools could
    tease out some information about how these texts
    (and, by extension, their authors) gained power
    in medical debates about ASDs, how they held on
    to this power despite the emergence of
    contradictory evidence, and how these case
    studies relate to each other within the genre of
    case studies about ASDs.
  • I also wanted to look at representations,
    ideologies, and discourse in these case studies,
    and how these factors relate to and correlate
    with first-person accounts by people with ASDs.

10
Case studies of people with ASDs
  • I decided to work from a list of well-known and
    frequently referenced case studies. Taken
    together, these help to form the basis of a core
    narrative about autism. This list included
  • Cases from Autistic Disturbances of Affective
    Contact, Leo Kanner, 1943
  • Melanie Klein (Dick/Richard), 1945 and 1961
  • Dibs In Search of Self, Virginia Axline, 1964
  • Joey the Mechanical Boy, Bruno Bettelheim, 1967

11
Case studies of people with ASDs
  • I also decided to include a set of 19th century
    cases that I have been working with. Because
    these were written before autism was named and
    defined, I felt they might offer a useful
    contrast.
  • NOTE I promised to look at a case by Margaret
    Baumer in my abstract, but have not completed
    that part of the work in time for this
    presentation.

12
Personal case studies by people with ASDs
  • I decided to compare and contrast these with a
    small set of
  • narratives by people with ASDs, including
  • Jim Sinclair, Bridging the Gaps An Inside-Out
    View of Autism, 1989
  • Tim Nickson, Autism Experience, 1978-1992, 1998
  • I deliberately chose to use two narratives by
    males with ASDs.
  • I find it interesting that although males with
    ASDs outnumber
  • females by at least 3 to 1, almost all of the
    best known personal
  • narratives by people with ASDs are by women.
    Sinclairs account is
  • chronologically congruent with the medical and
    parent accounts,
  • while Nickson is about a decade younger.

13
Parent-written case studies
  • I also looked at two book-length case studies
    by parents of
  • children with autism
  • The Siege by Clara Claiborne Park, 1967
  • The Small Outsider by Joan Martin Hundley, 1971
  • These are part of an extraordinarily large
    genre, encompassing
  • perhaps the greatest number of parent accounts of
    a childs health
  • condition. I chose the Park and Hundley accounts
    because they were
  • very influential (particularly in the US and
    Australia, respectively), and
  • because they overlap in time with the medical
    accounts chosen.

14
Medical case studies Dickinson
  • Before I look at the big names in autism
    research, I will discuss three case studies that
    I collected from the archives of Great Ormond
    Street Hospital. These date from 1872-1877, and
    were written or dictated by William Howship
    Dickinson, who volunteered to assist with child
    neurology cases at the hospital. In each of these
    case studies, symptoms are described that are
    consistent with modern DSM-IV criteria for
    autistic disorder. Dickinson diagnosed two cases
    as dementia, the third as epilepsy.

15
Medical case studies Dickinson
  • Dickinsons work was intended for use solely by
    himself and his colleagues, so no attempt was
    made to avoid or explain medical terms, or to
    build a cohesive literary narrative.
  • It is evident from the material that Dickinson
    used a semi-systematised data collection method,
    starting with basic patient details and branching
    out to family and patient medical history
    collected from parents. The bulk of his case
    studies is made up of direct observational data,
    some of it his own, some obtained by questioning
    nurses. As none of the children were verbal, no
    first-person testimony is included.

16
Medical case studies Dickinson
  • The words of carers (parents and nurses) are
    unattributed, and their contributions to the data
    are not qualified with the use of subjective
    modifiers. The observations range from
    telegraphic (Chest ricketty) to highly
    descriptive (Cannot speak, but if moved in bed
    contrary to her wises, or if anything is done
    that she does not like, she makes a
    half-screeching noise.)
  • Dickinson seems to be focused on the patients
    bodies, with descriptions of physical
    characteristics, movements, bowel habits, sleep
    habits, and seizures given more attention than
    purely emotional, behavioural, or intellectual
    descriptions.
  • Although his notes indicate he believes the
    symptoms he sees have an organic origin, he
    offers no prognosis.
  • In only one case does he attempt medical
    treatment, giving bromides, mercury chloride,
    senna, and cod liver oil to treat the third
    childs seizures. She is discharged with both
    medical and behavioural improvements noted.

17
Medical case studies Kanner
  • Leo Kanners case studies follow the typical
    pattern used by most medical doctors in his era,
    as through notes entered on a standard form have
    later been pieced together into narrative form.
    These case studies have been prepared for
    publication in a medical journal, so some
    specialist language is used. However, as the
    field of child psychiatry was still fairly new in
    1943, some terms and concepts are explained.
  • Each case begins with a paragraph stating the
    childs name, age at first clinic visit, and the
    reason for this initial admission. This reason is
    variously presented as a direct quote from a
    parent, as a quote or paraphrase of the reason
    given by a referring professional, or as a simple
    description of symptoms that may be Kanners
    observations or perhaps a summary of case notes
    received.

18
Medical case studies Kanner
This basic material is followed by a life
history narrative, generally including birth and
illness history, developmental milestones (age at
lifting head, crawling, walking, speaking, etc.),
and comments about the childs development and
behaviour from parents or other observers. Kanner
indicates that at least some of this descriptive
material came from written personal accounts
given to him by the parents. Each account also
includes a description of the childs parents,
including educational background and professional
attainment, and several include notes about
unusual or notable relatives. Some quotes from
the children are included, but primarily to
illustrate their idiosyncratic use of
language. Kanners own voice is rarely heard in
these descriptions, although those of other
first-person observers, such as parents, are
presented as quotes or in paraphrased segments of
text. Kanners own material is presented in third
person, and the language is relatively
dispassionate aside of the use of words such as
remarkably and skilfully in connection with
feats of memory or other accomplishments.
19
Medical case studies Kanner
Kanner recounts and summarises far more data on
the children's families (sometimes going back as
far as two generations) than on test results or
physiognomy. Family descriptions tend to focus on
unusual characteristics (psychoneurotic, very
brilliant, given to hysterics), but are
presented as quotations, perhaps derived from a
written parent questionnaire. When present,
material from other medical professionals
reports is not presented in quotations. Physical
clues, such as large head size, are noted briefly
without further comment. Kanners final comments
are addressed to fellow professionals, referred
to as we. These observations readily show where
his suspicionsand therefore his assumptionslay.
In this conclusion, Kanner does not attribute
psychological significance to the children's
unusual speech patterns, such as pronoun reversal
and echolalia. Although he does observe that many
of the parents are unusually intelligent,
obsessive, and cold, he does not suggest a
causal relationship between parental behaviour
and autism. Instead, he hypothesises that autism
may result from an inborn brain difference, and
suggests further study.
20
Medical case studies Kanner
Kanner does not offer a definite prognosis,
although he indicates that the children from his
initial study group have continued to develop,
and that he is cautiously optimistic.
21
Medical case studies Klein
Psychoanalyst Melanie Klein wrote more than one
account of her four-month treatment of the child
she calls Richard or Dick, but the best-known
version is presented in her book Narrative of a
Child Analysis The Conduct of Psycho-Analysis of
Children as Seen in the Treatment of a
Ten-Year-Old Boy (1961.) It presents her notes on
93 therapy sessions, and is described by the
author as a case-history. It is written in
first person and follows the Freudian model, in
which the analysts observations are presented
alongside purported direct quotes from the
patient, digressions into personal and family
history, and theoretical concepts. The
book-length version also incorporates several of
Richards drawings of submarines, bombers,
people, and shapes. Kleins sessions with
Richard took place in 1941, before the term
autism was applied to children. Klein did not
offer a solid diagnosis at the time (although she
referred to Richard in later years as
autistic,) instead using a variety of
pejorative terms such as anxious, schizoid,
paranoid, manic, worried, and depressed.
22
Medical case studies Klein
Although Kleins account of Richards analysis
is filled with words that purport to be his
quotes, it is notable that she rarely seems to
listen to what he actually has to say, nor does
she attempt to understand his personal system of
symbols. People with autism often note that they
may develop highly idiosyncratic symbolic
systems, in which words or objects have specific
personal meanings. Although Richard sometimes
offers information to his analyst about such
meanings, Klein instead applies a typical
Freudian symbolic systemeven though she
acknowledges that she has to teach the child what
he is supposedly saying symbolically, including
explaining what sexual intercourse and
genitals are. Far more space is given to
Kleins interpretations and notes than to
Richards actual words. Although the analyst
questions the veracity and meaning of nearly
everything the child says, she rarely expresses
any uncertainty as to her own observations.
23
A typical example of the text Richard got up
he dusted the room, stamped hard on the little
stools, kicked a ball about, which had to be
taken out of a cupboard, saying he did not want
it to be there. He shut the cupboard door, saying
that he did not want the ball to jump into the
cupboard it might get lost in there and he would
not be able to get it out again. Then he threw
another ball at the first one and said that they
were having fun. Mrs K. interpreted that
Richard had shown that he wanted to take the
fathers genital, represented by the ball, out of
Mrs. K. and Mummy (the cupboard) and to play with
it himself. This was expressed by the two balls
having fun he had used the same expression for
what he was doing secretly with his dog Bobby
in his bed, which meant doing something with the
dogs genital. Mummy was not to know about this,
not only because she would in any case object to
it, but also because he felt that Bobby stood for
Daddy and his brother Paul and therefore Mummy
would feel that Richard was robbing her of them.
The fear that the bad Hitler-penis inside him
would control and destroy him made him want to
throw it out of himself (as well as out of
Mummy.) This increased his wish to take in
Daddys good genital, which would give him
pleasure as well as reassure him against the fear
of the bad penis. But he feared that he would in
this way deprive Mummy, who he also felt
contained a good Daddy genital.
24
Medical case studies Klein
If a reader goes through this material reading
only Richards words and Kleins descriptions of
his actions without her added interpretations,
a rather different impression might emerge one
of a young child who is frightened and upset by
the ongoing war , has a strong fascination for
trains, ships, and planes, and loves his family.
Although Richards obsessional interests were
apparently strong enough to cause him to be
excluded from school, these are addressed only in
the context of Freudian symbology, never as
actual personal interests or occupations. Richard
s drawings are framed on either side by Kleins
interpretations, binding them closely to the
written text and discouraging independent
interpretation of their content.
25
Medical case studies Klein
The analyst is portrayed, both in Kleins
narrative and in the notes to other professionals
that accompany it, as an omniscient observer, and
a powerful healer. This piece was written for a
professional or student audience, and presents a
powerful, self-affirming (and even
self-aggrandizing) portrayal that is likely to
have a strong appeal to the chosen readersI
would argue that her self-portrayal is far more
powerful than her portrayal of Richard. The
power of this work may lie more in its appeal to
its chosen audience, more than in the utility of
the actual analytic material. It illustrates what
child analysis might consist of, and promises
practitioners and students that taking on the
mantle of therapist will provide them with a high
degree of personal competence and power. It acts
as an initiatory document, within which secrets
are revealed that, once mastered, can give you
special status.
26
Medical case studies Axline
Psychotherapist Virginia Axlines book Dibs In
Search of Self (1964) purports to be a case study
of a specific emotionally disturbed child whose
symptoms are consistent with an autistic spectrum
disorder. My research indicates that Dibs is
more likely to be a composite of several children
Axline treated, and that many elements of the
narrative are probably fictional. Dibs remains
one of the most-read books in child psychology,
and has been marketed as an account of successful
play therapy. The account is written in first
person, with much material from Dibs himself
presented in quotes. Axline frequently writes
about Dibs internal emotions based on his facial
expressions or on her own interpretation of his
play, even during the early part of their
interactions when his speech was limited to
simple utterances such as Dog? Cat? Rabbit? and
Go store!
27
Medical case studies Axline
Its impossible to analyse this text without
noticing how often, and how facilely, Axline
attributes psychological explanations to her
patients words and behaviour. For example, when
Dibs removes walls from a dollhouse in her
playroom, Axline follows a description of his
simple words and actions with a comment of her
own And in this playroom Dibs took away a
little of the walls he had built around
himself. Axline employs a full range of
rhetorical and fictive techniques to build a
narrative aimed at both a professional and
student/mainstream audience. The resulting text
employs little professional jargon. It presents
her experiences with Dibs as a trajectory from
otherness to normalcy, with no notable
attention to any physical symptoms that may have
been present, other than as the outcome of
psychological malfunction. The childs
developmental difficulties and unusual behaviours
are attributed directly to his mothers failure
to relate to her child with love, respect, and
understanding.
28
Medical case studies Axline
The book concludes with a happy ending,
including a grateful Dibs dubbing Axline the
lady of the wonderful playroom. Based on
spending over a decade reading literature about
autism, I think this is highly significant. It
appeals to all potential audience members
professionals, who see their expertise validated
and appreciated, and students, who are inspired
to achieve the therapists state of omniscience.
And although I would have to say its written in
parent-bashing mode, even parents may take away
a positive message that there is hope. Looking
strictly at sales figures, the most popular
narratives of autism have historically been those
that offer a prescription and a happy ending.
29
Medical case studies Bettelheim
So much has recently been written attacking the
veracity of Bruno Bettelheims accounts of his
work with autistic children that I need not add
to the chorus. That said, his work formed the
basis of most practitioners beliefs for nearly
40 years, and is still core to practice in many
countries. Bettelheim wrote twice about Joey,
a child obsessed with machines and mechanical
processes, in a lengthy article for a popular
audience and in a dedicated section of his book
Infantile Autism The Birth of the Self (1967.)
The latter account comprises material from the
Scientific American article an additional
observations, and is the one that I analysed.
NOTE a masters thesis about Joey by M. Monk
is also said to exist, but I have not been able
to locate it.
30
Medical case studies Bettelheim
Bettelheims account would be fascinating even
if read strictly as a work of fiction. It also
fit very neatly into social debates raging at the
time about the mechanisation of human society,
such as the work of Jacques Ellul, giving it
added interest. Bettelheim uses a plural voice
throughout much of this case study, intimating
that his findings are shared by the Orthogenic
School staff as a whole. This gives added power
to his words, and may have served to deflect
criticisms that might otherwise have been raised
about his own somewhat murky educational and
professional background. By resorting to the
royal we, he encouraged the reader to believe
that his entire staff observed the same
behaviours in Joey, and came to the same
conclusions about their meaning and, eventually,
the childs treatment. The particulars of Joeys
case are reported in a highly descriptive
narrative, interspersed with interpretive
statements from Bettelheim, and illustrated with
two photos and eight of the childs drawings.
31
Medical case studies Bettelheim
The following brief passage is typical of the
text A fan was something Joey could take apart.
He could put it together again. He understood it.
He was not as helpless about that part of the
experience as he was about the experience in
toto. If the fan could stand for the total
experience, if machines could be as totally
important as parents, could even stand in for his
parents, maybe he could understand and master the
experience itself. Bettelheim describes his
leap from the observable (Joey can take apart
fans and put them back together) to the interior
(this activity is an analogy and/or a substitute
for understanding what makes other people tick)
as deductive, but conflates his deductions
with facts by writing them between seemingly
objective observations. He leads readers along
the same path of deductive reasoning that he
followed, without explaining the relationships
between the facts and the theory.
32
Medical case studies Bettelheim
The representation Bettelheim creates of Joey is
one of complete otherness he variously describes
the child as a complex machine, a
boy-machine, a robot, and a machine-powered
body. As a story, Bettelheims case study of
Joey recalls the narratives of morbid curiosity
that characterise so much early literature on
disabilityonly in place of speculations on
humours or sin, he substitutes the appearance of
scientific certainty. Joeys machine-powered
body is a defense he has built to protect
himself from an indifferent mother, memories of
witnessing the primal scene as an infant, even
diapering practices that were businesslike
rather than performed with satisfaction, he
says. No explanation is offered as to why such
common occurrences should have resulted in a
catastrophic and unusual reconfiguration of
behaviour in this child.
33
Medical case studies Bettelheim
Nor is any mention made of medical tests, or of
the use of objective psychological or
intelligence testing. This serves to buttress the
idea that an expert observerthe therapistcan
identify the problem, analyse its causes, and
provide the necessary treatment without
assistance from any other experts. Like the work
of Klein and Axline, this appeals to individuals
who want to be powerful, whether they are
professionals or students who hope to be
professionals. From the point of view of people
who have been diagnosed with autism, however, it
assumes a position of powerlessness in which
others will diagnose, analyse, and treat, a
process in which ones only personal contribution
will be cooperation and compliance.
Bettelheims words gain additional power from
his use of rhetorical devices, and from employing
powerful metaphors (the empty fortress is just
one of these.)
34
Medical case studies objective observations
I have examined quite a few case studies that
are based on using so-called objective
diagnostic and observational tools. These include
case studies by Eric Schopler, Rita Jordan, and
Chris Gillberg. Interestingly, this approach has
been adopted enthusiastically by special
education professionals. It seems that for this
group, a diagnosis is made more concrete by the
presence of Weschler scores, Sally-Ann tests, and
EEG findingseven when the data does not indicate
a specific direction for educational
practice. Harvey Molley and Latika Vasil (2002)
have examined this phenomenon in relation to
Asperger syndrome, part of the autism spectrum
disorders family. They write that this appeal to
objective medical data allows educationists in
particular to brush aside questions about the
social construction of Asperger syndrome as a
disability. This argument has merit, and
deserves further exploration. Data may also be
sought to underpin educational practice, however,
or to ensure that children receive beneficial
program adaptations or services.
35
Medical case studies objective observations
The language used in objective data-based case
studies tends to be dry. Perhaps thats why even
now more non-professionals have read therapists
accounts of autism in the 1960s than current
journal articles. Therapists tend to tell
stories, and to set disability within a narrative
structure that has a familiar trajectory
(problemstruggleresolution.) This is not the
case when autism is written up like a medical
condition, using the conventions of that
form. When Eric Courchesne (1998) and his
colleagues discuss the neuropsychological results
of seven people with Asperger syndrome, for
example, the resulting text is heavily laden with
acronyms, numbers, citations, and specialist
language In a group of 4- to 6-year-olds
characterized with PDD and differentiated into AD
and AS groups by the presence of significant
history of language impairment for AD, but not
for AS children, it was found that the AD
children performed poorly on the Verbal Reasoning
subtests of the Stanford-Binet Intelligence Scale
(4th ed.) (Thorndike, Hagen, Sattler, 1984).
36
Medical case studies objective observations
Courchesne et als article provides test scores
and even brain scans of the seven people studied,
but the people themselvestheir backgrounds,
lives, personalities, desires, interestsare
absent. Where the therapist accounts tend to
place the patient in the background as an object
to be interpreted or acted upon by experts, or
highlight the patient only as an object of
curiosity, the patient-as-person is strangely
abstracted in these accounts. Although they are
no longer on display for the publics education
or amusement, these children have become
disembodied brains cases without names or
faces.
37
Personal case studies
If you have read books by people diagnosed with
autism, it may not have struck you to ask in what
ways the text was mediated before falling into
your hands. However, most of the best-known
people with autism who have written published
autobiographies have worked with non-disabled
editors. Temple Grandins co-editor gets a cover
credit, but many do not. The Internet has
allowed far more people with autism to present
their own case studies in a less mediated
fashion. Many of these accounts can be accessed
through Web sites like www.autistics.org, which
are run by and for people with autism.
38
Personal case studies
Jim Sinclairs story Bridging the Gaps (1992)
is largely a response to the many things he has
been told about autism by people who have no
personal experience of the condition. It is a
response to how other peoples assumptions and
beliefs have disabled him. As he puts it The
results of these assumptions are often subtle,
but theyre pervasive and pernicious I am not
taken seriously. My credibility is suspect. My
understanding of myself is not considered to be
valid, and my perceptions of events are not
considered to be based in reality. My rationality
is questioned because, regardless of intellect, I
still appear odd. My ability to make reasonable
decisions, based on my own carefully reasoned
priorities, is doubted because I dont make the
same decisions that people with different
priorities would make. Im accused of being
deliberately obtuse because people who understand
the things I dont understand cant understand
how anyone can possibly not understand them. My
greatest difficulties are minimized, and my
greatest strengths are invalidated.
39
Personal case studies
Tim Nickson (1996) is not a fluent writer like
Sinclair, but his autobiographical writings also
highlight the differences between these personal
accounts and those of either parents or
professionals. Nicksons account is
chronological, and discusses people and events in
his life that were important to him his
favourite birthday presents, funny things his
friends at school did, his hobbies, and what it
felt like to be bullied at school. He sometimes
discusses his interactions with professionals,
and I imagine that his account of events and
theirs would make an interesting comparison. He
discusses his special interests (drawing, horror
films) matter-of-factly, not as symptoms or as
evidence of character flaws, but as part of his
life and his efforts to cope with situations that
left him somewhat powerless. He is an active
agent in this accounta person who acts according
to the abilities and circumstances in which he
finds himself, based on highly personal
motivations.
40
Personal case studies
Sinclair, Nickson, and others present an
alternative version of the autism narrative. They
acknowledge impairment where it exists, but
proudly discuss achievement as wellnot as
something remarkable but as part of their
personal identity. They generally dont discuss
their test scores, and few have much use for
psychologists theories about autism. As Sinclair
puts it, I find great value and meaning in my
life, and I have no wish to be cured of being
myself. Personal case studies may be written
for a parent/professional audience, like
Sinclairs, or for a peer audience, like
Nicksons. The former are more likely to directly
address issues of impairment and disablement,
while the latter conform more neatly to the
conventions of diary, blog, or autobiography.
41
Parent case studies
There are close to 50 parent-written accounts of
autism in print, not counting those in electronic
form only or those that have been disguised as
clinical accounts. These books can be roughly
divided into two categories pathographies, or
illness narratives and accounts of using a
specific type of therapy. Many texts of the
second type are advocacy or instructional
literature, although they may also include
elements of illness narrative (for example, Let
Me Hear Your Voice by Catherine Maurice.) Avdi,
Griffin, and Brough (Journal of Health
Psychology, 2000) have examined how parents
construct the problem of ASD during the
assessment and diagnostic period. They note that
parents must engage with the discourses of
normal development and disability, as well as
with the medical model of autism. One area these
authors touch on only briefly is the effect of
autism on the family, including stigmatisation of
parents identities as well as of the child with
autism. I would argue that many parent narratives
have coping with this spoiled social identity
is at core to many such narratives as coping with
autism itself.
42
Parent case studies Park
Clara Claiborne Parks book The Siege The First
Eight Years of an Autistic Child (1967) combines
all three of these types. It was written in part
as a deliberate response to Bettelheim, who stood
higher than any other authority on autism in
the 1960s. Park walks the reader through her
daughter Ellys first years, from birth, to the
first inklings that there is a problem, to
diagnosis, and to such treatment and education as
was available to a well-off, professional family
at the time. At the end she comes round to the
idea that what Elly needs most is respect for her
personal integrity, support for her special
talents, and assistance with those tasks she
finds difficult. This approach seems to have
worked well, as the adult Elly (still severely
autistic) is an accomplished artist and strong
self-advocate, who lives independently with
community support. Her family has also coped with
its challenges, including explicit
stigmatisation. Park was able to put forward her
case in The Siege, which she has later stated was
a powerful factor in holding on to her own sense
of personal worth as well as an act of advocacy
for her child and others with autism.
43
Parent case studies Park
Parks prose is fluid and sometimes even poetic,
but as she is a lecturer in English literature,
that should be expected. She shows a keen eye for
detail, focusing on kinds of events that interest
parents of typical children as well as unusual
behaviours. Park is forced to confront realities
that she had not expected, including the
stigmatization of mental illness (autism was
then thought to be analogous with childhood
schizophrenia, and non-organic in cause,) the
discourse of normalcy, and the medical model of
autism. It is perhaps Parks account of being a
parent subjected to psychiatric interrogation
that is the most powerful part of her narrative.
It made The Siege a word-of-mouth bestseller
among parents with autism, and presented a
rational, well-researched counterpoint to The
Empty Fortress (the symmetry of the titles was
not an accident.) Several individuals have
pointed to the publication of The Siege as a
watershed event in the history of autismquite a
claim for a simple personal narrative with no
miracle cure in sight at the end.
44
Parent case studies Hundley
Joan Martin Hundleys The Small Outsider (1971)
performed a similar role in Australia in terms of
being a flashpoint for parent advocacy and
support. Hundleys writing is less literary
than Parks, and perhaps less sentimental. She
recounts how she engaged with the disability
discourse literally on the first day of her
sons birth, when his feeding difficulties and
manner gave rise to vague suspicions that he was
unlike her other children. Because Park was 40
(an elderly multi-para in medical lingo), she
had been anxious about the childs health even
before his birth. Her construction of the child
already included illness or disability as a
possible outcome. He developed severe allergies
and eczema in addition to continued feeding
difficulties in his first year, adding to his
discomfort and her worries. Preoccupied with his
poor physical health, she was only gradually
aware that his behaviour was also unusual.
45
Parent case studies Hundley
Here is an excerpt from the text describing the
time when the problem was reconstructed By
the time David was two years old he appeared to
be unaware of food, and even stopped holding
crusts inn his hands. His interests narrowed down
to his bottles, two plastic soap-dishes, water,
which continued to excite him, and the wheels of
his stroller, which he spun round and round till
his fingers bled. There was never a period in
his life when things went smoothly, but now began
the most frightening period of all. He became
less and less interested in the world around him
till for some of the time he seemed to be in a
sleepwalking state.
46
Parent case studies Hundley
Hundley discusses comparing her son with his
siblings and other children, and trying to
construct a way of seeing him as normal. She
also discusses her engagement with the medical
model of autism, which she found lacking, and
with disability stigma as it applied both to
David and to her family. At one point she writes,
following a public fracas that left three people
injured How could I go on? How could I face a
lifetime of staring faces every time I took David
out? The embarrassment was already hard for his
sister Ellen to take. What sort of future was
there for her with such a child in the family?
47
Parent case studies
As Griffin et al note, most research into the
effect of a disability diagnosis on family
members relies on the paradigms of loss and
stress reaction. Researchers assume that
having a child who is seen to have a disability
will be perceived as a loss, and/or as a
stressful change in the family dynamic. Parent
case studies of autism tend to look away from
these paradigms and identify the effects of the
disability discourse quite clearly. Some, like
Hundley and Park, respond to this awareness with
activism and active rebuttal of stigma others
respond by embracing the medical model and
seeking a cure. Most express an ambivalent
position, without either the tone of omniscient
certainly that pervades so much of the medical
case studies, or the narratives of loss that some
researchers might expect. Griffins findings were
similar, with parents holding multiple,
ambivalent and often apparently conflicting
meanings in their talk.
48
SOME CONCLUSIONS
Applying media and cultural studies techniques
seemed most useful when examining the medical
case studies, but was also helpful in framing
comparisons between these narratives and both the
personal and parent narratives. Perhaps this is
because the position of power within the medical
narratives is much clearer. Normally the genre
of medical writing is highly systemised, but only
the objective observations followed these
conventions as expected. The texts from Dickinson
and Kanner showed evidence of systematic data
collection, but were not presented in a strict
format. The Klein, Bettelheim, and Axline texts
were written a format that more closely
approximates a fictive narrative than a medical
text. This is a convention they share with other
psychology case studies.
49
SOME CONCLUSIONS
The parent case studies present an interesting
contrast, both in their ambivalent tone and in
how the writers position themselves in relation
to the discourses of normalcy, disability, and
the medical model. There is a juxtaposition
between acceptance of these mainstream discourses
and of their subversion through the seemingly
straightforward description of their own familys
experiences. Exploring the difference between
these narratives and the narratives of loss and
stress reaction that the literature on parent
reactions to childhood disability would lead one
to expect could be a very worthwhile pursuit. It
could be that these parents experienced their
childs diagnosis with autism quite differently
because the medical model of autism at that time
put the blame on poor parenting, but examination
of more recent narratives reveals a similar
pattern.
50
SOME CONCLUSIONS
The personal case studies are the most
interesting of the three groups, and the most
resistant to the application of these tools for
analysis. Part of the reason is that narratives
written by people who have communication
difficulties and a different pattern of interests
than most of their peers do not always follow the
prescribed conventions of any genre. Dicksons
text, for example, is diary-like but most
non-autistic readers would find it idiosyncratic
in what it chooses to emphasise. Sinclairs text
is more accessible, but it was written primarily
for a non-autistic audience, and represents an
attempt to explain some discrepancies between
what the experts have to say and the lived
experience of autism. As mentioned earlier,
readers need to consider issues of editing and
other forms of mediation before assuming that all
first-person narratives of autism are equally
authentic.
51
SOME CONCLUSIONS
Analysing these three sets of texts side-by-side
highlights issues of representation of people
with disabilities, including the social
construction of disability categories through
narratives, the representation of people with
disabilities as other, and the marginalisation
of lived experience by the dominant medical
discourse. Employing media and cultural studies
tools allows us to examine these texts for
ideology, voice, and power place them in social
and genre context understand how audiences may
read and be influenced by them and decode the
use of rhetoric and intertextuality to better
understand how they have historically exerted
power within the discourse of autism.
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