The League to Fight Neurelitism: Resource Library

Understanding the Polyvocality of Autism Discourse

A Critical Autoethnographic Approach

Sarah Grubb, Master of Arts

Child and Youth Studies

Submitted in partial fulfillment
of the requirements for the degree of

Master of Arts

Faculty of Social Sciences, Brock University
St. Catharines, Ontario

October, 2007

Table of Contents

First Interlude
Thesis Framework






Chapter One:

Autoethnography as a Method of Inquiry

Chapter Two:

Dominant Autism Constructions

Truths within Dominant Autism Discourse

Second Interlude

Chapter Three:

Autism through the Modernist Lens

Third Interlude

Chapter Four:

The Postmodern Discourse as a Space of Resistance

Fourth Interlude

Chapter Five:

Deleuze and Guattari (1987):

Escaping Dominant Conceptualizations of Language

Fifth Interlude

Chapter Six:

Franco Basaglia and the Anti-psychiatry Movement in Italy

Sixth Interlude
Seventh Interlude










Chapter Seven: 57-64
Foucauldian Analysis of Madness and Power

Eighth Interlude 6 1 -62

Chapter Eight: 64-76
Investigation of Autism Practices using the Theoretical
Framework of Deleuze and Guattari, Foucault and Basaglia

Ninth Interlude 73-74

Interlude 10 16-11

Chapter Nine: 77-80
The Problem with Dominant Language

Chapter Ten: 80-82
Insurrection of Subjugated Knowledges

Interlude 11 82-83

Chapter Eleven: 83-98
Autism Voices

Interlude 12 89-90

Interlude 13 93-94

Interlude 14 95-96

Interlude 15 98-99

Chapter Twelve: 99-104
Dialogically Encountering "Otherness"

Chapter Thirteen 1 04- 1 06
Challenging Dichotomies

Chapter Fourteen 1 06- 110
Future Directions of Autism Research

References 111-125

To those who supported my continual struggle "between epistemologies", who were
sensitive and open to my dialogical engagement with alternative epistemologies and critical
discursive thought, I thank you!

Specifically, to Hans Skott-Myhre who persistently challenged my current way of
thinking. Thank you for always finding time to engage in philosophical and theoretical
conversations, for supporting my own unique research thoughts and ideas, for never letting me
give in and conform to what was comfortable and socially acceptable, and for allowing me to see
that being on the edge of radical theory can actually be quite fun! To Danny Tarulli, for being
genuinely critical in a soft subtle manner, for always making me see the other side of the
argument, and for keeping me balanced. Your extreme sensitivity to detail and your continual
comments, suggestions and edits throughout this entire process has made this thesis sound so
much more eloquent! To Trish Vause, who has maintained an open mind throughout this entire
process, thank you for offering me "the other" perspective and for seeing the value in alternative
ways of thinking about people with autism. To John McNamara, for your constant
encouragement, sensitivity and compassion throughout the past two years, and for compelling
me to complete this thesis on my own terms, thank you!

To my close family and friends, who have lived and breathed my entire university
experience. Thank you for being supportive, for being patient during my incessant ramblings of
critical social theory, and for taking the time to understand something so close to my heart.

Lastly, to the children with autism I have previously worked with, and to those people
with the PDD label and their families who are critical of current constructions of autism. You

have forced me to evaluate my need to impose my own values and ways of knowing on you.
Thank you for challenging me to think outside my own subject position.

Currently, much of the autism literature supports the notion that Pervasive Developmental
Disorder (PDD) is a deviation from what is considered "normal" and, accordingly, that it is in
need of early remediation. This thesis explored alternative constructions of autism and pathology
by drawing on theorists from other disciplines, such as cultural studies (Deleuze & Guattari,
1987, 1965, 1972, 1975,1980, 2003), critical psychology (Parker, 1995, 2002, 2005, 2007),
disability studies (Danforth,1997, 1999, 2000; Skrtic, 1995, 1996) and anti-psychiatry (Basaglia,

In an attempt to show how our accounts of the world encompass constructions rooted in
language and our own histories of thinking about topics that interest us, this research took an
autoethnographic approach to understanding autism discourse. Instead of denying the
researcher's existence and personal investment in the research, the author attempted to implicate
"the self in the research by acknowledging her own assumptions, biases and ideologies about
autism discourse and practice. Thus, tensions between the self and other, personal and political
become woven into the fabric, creating a personal, subjective, and partial account of the

This research was intended to explicate and interrogate some of the taken-for-granted Truths
which guide our practices with people with autism. This alternative critical framework focused
on understanding autism as a discourse and explored the way these dominant autism
constructions function in society. Furthermore, positioning "the self in the research was meant
to illustrate the fundamental need for self-reflective practice in the social sciences.


I looked up the road I was going and back the way I come, and since I wasn't satisfied, I

decided to step off the road and cut me a new path.

- Maya Angelou

An old white guy once said "one person's struggle is another's liberation." This thesis is
written for those who see a piece of themselves in my writing. For those people, like myself, who
did not previously have the language or theoretical framework to articulate their anxieties with
the "power over" techniques used in the psychological sciences, may this thesis offer you an
alternative theoretical framework to evaluate "the self and the dominant practices and
techniques used in the psychological sciences.

My challenge to you, reader, is to place yourself in a "space of discomfort" by reflecting
on and challenging the taken- for-granted Truths governing your life and to explore how these
Truths function to enhance or restrict capacities for change and collective action.

First Interlude

For as long as I can remember I have wanted to make an impact on the world. Not in the
traditional sense of making lots of money, having numerous material possessions and retiring
early — which in our current society can been considered the western dream — but rather by
positively influencing, affecting, inspiring and supporting children and youth. In keeping with my
overarching goal of helping people, I have volunteered in a variety of different settings,
particularly gravitating towards organizations supporting children and youth labeled deviant,
disordered, or disabled. In the third year of my undergraduate degree, I became involved in a
home-based program for two twin boys, Jacob and Joshua, 1 both diagnosed on the Autism

The program was called Intensive Multi-Treatment Intervention (IMTI) and was developed by
Jonathan Alderson 2 to treat the multifaceted nature of autism. IMTI incorporates a variety of

1 In order to maintain the family's identity these names are pseudonyms

2 Alderson completed his undergraduate degree in developmental and educational psychology at the University of
Western Ontario and went on to receive a Masters of Education in Administration, Planning, and Social Policy at
Harvard University. He received a three-year intensive certification training in autism treatment at the Son-Rise

different treatment modalities in order to address the multi-faceted nature of the causes and
dysfunctions of autism. The program takes a holistic and individualized approach to address the
unique needs of each individual child with autism and incorporates, biological treatments,
behavioural and cognitive education and family and therapist attitudinal training (Intensive
Multi-Treatment Intervention, 2007).

My own personal involvement in the IMTI program allowed me to receive training as an IMTI
volunteer therapist. During my IMTI training I became particularly interested in the concept of
"joining, " which was included as one of the many components in the IMTI program 4 .

Contrary to traditional behaviourial interventions, joining meant the therapist would join in (i.e.,
imitate) the child's behaviour even if it was considered socially inappropriate (e.g., rocking).
This is true in all cases except where the child was engaging in dangerous behaviours (e.g., the
child was causing direct harm to self or others). Through joining it is thought the adult 's
actions become more predictable, leading the child to become more engaged, socially available
and motivated to be with others (Sacks, 2003).

The theoretical underpinning of joining closely parallels the importance assigned to the therapist
developing a non-judgmental attitude based on love and acceptance of the child. Since the Son-
Rise Program (SRP) philosophy considers emotions to arise from beliefs, it is thought a person
can make the choice about how he/she feels in certain situations. The person is therefore able to
alter his/her beliefs through what SRP calls an "internal dialogue " and make the choice to be
happy with the situation. Choosing to be happy means being accepting and loving of all people
for what they are, not for what we want them to be (Jordan & Powell, 1993).

Due to the lack of empirical evidence to support the concept of joining, and owing to its
emotionally appealing theoretical orientation which focuses on love and acceptance, SRP has
been criticized for providing false hope to parents. Notwithstanding this criticism of the SRP, my

Program of the Option Institute in Massachusetts, including over 1500 hours of one-to-one floor-time with children
with autism. (IMTI, 2007)

3 The concept of joining was derived from an intervention founded in Massachusetts called Son-Rise (SRP) (see
Autism Treatment Center of American 1998-2007 for more details).

4 Other components of the IMTI program included; biological treatments such as Defeat Autism Now! (DAN!) (see
Autism Research Institute, 2005-5006 for more details), Specific Carbohydrate Diet (SCD) (see Gotcshall, 2005 for
more details), Auditory Integration Therapy (AIT) (see Berard, 2007 for more details); Cognitive-behavioural
treatments beyond Son-Rise, included various recreation programs such as Kindermusic, Brain Gym, PC-based
learning/and participation in sports.

5 When this type of dangerous behaviour occurs the adult is taught to give no reaction, since it is thought if the child
is engaging in this behaviour it is because they associate it with a positive outcome. If the behaviour is no longer
useful, they will likely turn to alternative behaviours. This explanation closely resembles operant conditioning (i.e.,
reinforcement and punishment) behaviour therapists utilize. The difference between the two therapies is that
behaviourists will utilize these principles when the child is engaging in any behaviour that is considered
inappropriate (i.e., repetitive self-stimulatory behaviour, self injurious behaviours, aggression etc). SRP will only
utilize this principle if the child is in danger of harming himself or others around him/her: the therapist will "join" in
with all other repetitive ritualistic behaviours the child displays.

6 Some anecdotal examples of the boys progress: the boys went from making grunting noises to get someone's
attention, to speaking in full sentences (e.g. "I want puzzle"); the boys went from maintaining no eye contact or
initiating social interaction, to looking and speaking the therapist's name, waving hello and good-bye and giving
hugs. By the end of the two years the boys were reading at a grade 1 level and were learning simple mathematics.


involvement in the IMTI program, a more comprehensive approach, allowed me to witness two
non-verbal and socially withdrawn boys transform into highly verbal and socially responsive
children 6 .

Having experienced the effectiveness of the IMTI program first-hand, I entered my fourth year of
university convinced I could provide scientific support for the SRP concept of "joining".
Following the strict guidelines of empiricism and notions surrounding measurement and error,
my advisor and I developed a well controlled research project aimed at evaluating the SRP
concept of joining against discrete trial training (an already empirically validated strategy used
in most Early Intensive Behavioural Interventions [EIBIJ programs). Although maintaining a
non-judgmental attitude and evaluating therapist beliefs towards autism and autistic behaviours
were key components of SRP joining, they were identified by my advisor as being impossible to
measure objectively and deemed irrelevant to the overall project. I became quite frustrated
during this process, as reducing joining to a series of measurable parts did not seem to
adequately capture the essence of this component of the IMTI intervention. This was the first
time I began to question whether controlled empirical research did, in fact, mimic the daily
experiences we encounter in our everyday lives.

As I began to voice my concerns and discomforts with reductionism, I was confronted with issues
of objectivity. I was told I must distance myself from my own personal experiences with the IMTI
program and maintain a neutral status. In order to do this, I was required to operationally define
the behaviours I was recording — that is, define them in such detail that another observer would
be able to record the behaviour in a similar way. The integrity of the study would then be based
on inter -observer reliability. Subjectivity — and hence error and bias — could be masked by the
percentage of agreement between two independent objective observers.

The findings of my undergraduate thesis revealed the discrete trial training condition (a primary
component oflBI) to be consistently superior to the SRP joining condition in promoting child
skill acquisition. Interestingly, in the SRP joining condition the child displayed more positive
affect (i.e., smiled, giggled more often) and engaged in less negative behaviour (displayed less
aggression, crying, tantruming and repetitive behaviour) than in the discrete trial training

Irrespective of these interesting findings, I started to question the integrity of joining. Was I
merely imagining the joining component of the IMTI program to be effectively contributing to the
boys' progress? Was I so emotionally caught up in the SRP joining feel-good philosophy of
maintaining a non-judgmental attitude and following the child's lead that I only imagined this
component was contributing to the significant progress the boys were making in social
interaction, language and communication?

Becoming a professional in the "autism industry" but being unable to come to any definitive
conclusions about my own subjectivity and bias concerning SRP made the idea of becoming a
certified behaviour analyst seem like the only plausible career option for me — that is, if I wanted
to work with young children with autism. In line with the increasing awareness of "best practice
methods" and "professional accountability", applied behaviour analysis (ABA) provided hard,


unbiased, scientific evidence for treatment effectiveness, and empirical evidence consistently
revealed ABA techniques to be successful at teaching children with autism, reducing
maladaptive behaviours, including self- injury, and increasing adaptive behaviours, such as
language and communication. By becoming a certified behavioural analyst I would be able to
fulfill my desire to positively influence, affect and inspire children with autism and other
developmental disabilities.

Coming from the traditional discipline of psychology as the "scientific study of human
behaviour, " it was only in the first year of my masters in Child and Youth Studies that I became
exposed to alternative epistemologies — to epistemologies that explicitly problematize taken-for-
granted concepts and ideas like objectivity, reality, empiricism and progress. These alternative
ways of knowing challenged the assumptions I had otherwise un-self-critically appropriated
during my undergraduate training in psychology.

Authors operating within this new paradigm argued that despite the apparent "effectiveness " of
behavioural therapy, behavioural intervention can be seen as a form of naive pragmatism, as it
evaluates the functional efficiency and utility of specific behavioural models, practices and
techniques in terms of the binary logic of what works and what does not, but unreflectively
accepts the assumptions, theories and meta-theories in which these proclamations are
manifested (Basaglia 1987; Foucault, 1965, 1872, 1975, 1980; Skrtic, 1995; Parker 1995, 2002;
Sailor & Paul, 2004). Put another way, within the behavioural realm, assumptions surrounding
the duality of reality, the progressive nature of science and the notion of language as an
accurate representation of internal conceptions are left unchallenged. These authors argue that
it is only by examining the functions of dominant autism discourse outside the dominant
structures ofscientism and medical model perspectives of deviance and professional practice
that we will begin to see how these discourses currently function in our society.

The purpose of this thesis is two-fold: First, it seeks to provide a descriptive account of
modern and postmodern modes of thought and how their associated epistemological frameworks
relate to autism discourse 7 . Second, it will describe my history as a white middle-class female in
the academy and discuss current anxieties about my future as a becoming academic and
practitioner in the autism industry. These two approaches will attempt to explore the specific
function that constructions of autism, deviance and pathology serve in various intellectual

7 Throughout this thesis the terms Pervasive Developmental Disorder (PDD) or autism will be used to describe all
individuals labeled with any 1 of the 5 disorders falling under this category (described below). In doing so, the
intention of this paper is not to homogenize autism experience or to suggest that all people labeled with PDD will be
exposed to the same constructed realities and discourses surrounding autism diagnosis, assessment, and treatment.
Rather, it is to illustrate the problematic nature of allowing uncontested Truths about PDD to guide our practices and
treatments (e.g., characterizing autism in terms of how it deviates from normal development). For these reasons, the
term PDD will be used to describe all individuals falling under this umbrella term.


frameworks (e.g., traditional psychology, sociology, critical theory, cultural studies, etc.) and
mediums of generating knowledge (i.e., empirical research, anecdotal accounts, personal
narratives etc.).
Thesis Framework

The thesis will be organized according to chapters. Chapter 1 will begin with an overview
of the methodology. Research objectives and questions will be posed. At this time
autoethnography as a method of inquiry will be described, followed by a description of specific
texts selected for personal reflection. In Chapter 2, the reader will be provided with a
comprehensive summary of autism literature to date, including discussions surrounding autism
diagnosis, etiology and treatment. Chapter 3 will describe the modernist discourse, including
notions surrounding truth, progress and language as an accurate representation of reality, and
will seek to show how the dominant autism literature to-date fits neatly into this paradigm.
Chapter 4 will unpack modernist assumptions using postmodern discourse, which will provide a
space for the author/reader to resist dominant autism constructions. Chapter 5 will provide a
theoretical summary of "postulated linguistics" in Deleuze and Guattari's (1987) A Thousand
Plateaus: Capitalism and Schizophrenia. A theoretical summary of Franco Basaglia (edited in
1987 by Scheper-Hughes & Lovell) and the anti-psychiatry movement in Italy will be provided
in Chapter 6, followed by a Foucauldian framework for understanding madness and power in
Chapter 7. Theory from Chapters 5, 6 and 7 will be used as tools in Chapters 8 and 9 to further
unpack current constructions of autism and deviance and to investigate the function of dominant
techniques used in the autism industry. Chapter 10 will discuss Foucault's insurrection of
subjugated knowledges, which will lead into Chapter 11, which will describe an emerging
discourse within autism, featuring the voices of people with the autistic label. In this chapter


dominant "Truths" about autism that were initially discussed in Chapter 2 will be reinvestigated,
in order to see if these dominant constructions coincide with the personal experiences of people
with the autism label. Chapters 12, 13 and 14 will identify and unpack a series of themes found
throughout the above chapters, including misconceptions with self-reflective writing, challenging
existing dichotomies found in the social sciences, and the essential role of the "other" in the
understanding the self. The primary aim of these concluding chapters is to provide the
reader/author with a space to discuss how this information can be used to conduct research and
work with people labeled with autism.
Thesis Format

Similar to Kaufmann (2005), I believe every text I read is appropriated and re-
appropriated through my own life history and consequently my own life history is rewritten as I
come in contact with alternative texts. With this in mind, there is no "real" or "universal"
theoretical framework ofFoucault, Basaglia and Deleuze and Guattari, but rather the reciprocal
process of writing and re-writing allows each use of theory to be constructed through the
autobiography of the researcher and interpreted and rewritten through the autobiography of the
reader. Kaufmann (2005) refers to this dynamic exchange between theory and self as an
autotheoretical piece of writing.

Throughout this paper, theoretical interpretations will be disrupted with autoethnographic
portions (i.e., interludes such as the italicized narrative above), which will include personal
accounts of my life and personal reflections on various forms of literature and media, including
empirical research, books, movies, websites and personal narratives of individuals with
Pervasive Developmental Disorder (PDD). Throughout the remainder of the thesis the font of the
text will indicate the source of the piece. Standard, non-italicized text will be used for authors


from peer-reviewed texts (i.e., journal articles) and other literary mediums (i.e., books, anecdotal
accounts of people with the autism label and their families, websites, movies etc.). Italicized text
will serve as a visual cue to the reader that the content has shifted from theory to the author's
personal reflections related to the self and other and how exposure to different theoretical
paradigms may impact our work with individuals labeled PDD. This dynamic shift from the
author's personal experiences to theory (examining these experiences through a wide angle lens
by acknowledging the social, political and cultural structures encompassing the personal
experience) will attempt to move beyond current representations of the author and again, will
expose a self that is moved by these cultural interpretations (Ellis, 1999).


Chapter 1 : Autoethnography as a Method of Inquiry
Closely paralleling the dialogical nature of Basaglia's work 8 , this research attempts to use
what is typically defined in contemporary literature as a critical theoretical framework, opening
dialogue to discuss why dominant techniques in the autism industry have been designed in
specific ways, and similarly, deconstructing these practices to make transparent existing
contradictions by examining the confining nature of these partial and incomplete descriptions
(Cherryholmes, 1988). This critical theoretical framework closely parallels the author's personal
journey of her own experiences through dominant autism discourses to alternative postmodern
epistemologies which unpack our perceptions of truth, progress, and language and include ideas
related to madness and professional power, and finally, to contemporary critical personal
narrative accounts of people with the autism label 9 . This multi-perspective piece attempts to
transcend the boundaries between and beyond disciplines, incorporating scientific as well as non-
scientific accounts of autism.
Research Objectives

The main purpose of this research is to make transparent the underlying unarticulated
assumptions surrounding traditional autism discourse. Yet the intention of this piece is not to
suggest the alternative discourse of autism is a better or more superior way of thinking about
people with autism, as the reality of today will differ from the reality of tomorrow and in trying
to freeze it, it either becomes distorted or irrelevant (Basaglia, 1987). This research is not a quest

Basaglia's collection of readings illustrates controversies surrounding traditional psychology and the limitations of
using existing dichotomies (i.e., sane-insane, normal-abnormal, and rational-irrational) as real universal concepts
about the world. Yet, he points out that once we call into question these existing dichotomies, we run the risk of
falling into the same impasse. Basaglia (1987) argues for "a psychiatry that constantly checks itself against a reality
and finds in that reality elements by which it can challenge itself (p. 75).

9 It is important for the reader to note that the above critical theoretical framework will not operate as an
independent method of inquiry separate from the autoethnography. Rather the theoretical framework is used to elicit
critical reflections as it outlines the author's academic trajectory to date, taking the reader on an expedition of the
author's own thoughts and critical reflections of the material under investigation.


to find the ultimate Truth of autism, since no universal Truth exists either in language or beyond.
Since language is organized to produce specific scientific Truths the aim of this paper is more
simply to destabilize these Truths, enabling alternative, local, particular and unstable truths to
emerge — truths that will empower instead of marginalize those whose speech, experience and
behaviour fall outside the defined norm 10 .
Research Questions

With this in mind, the question is not what theory, ideology or research most accurately
represents autism "reality," but rather what function do governing autism theories, ideologies and
dominant modes of research serve, in relation to maintaining existing structures in society.

More specifically, as I find myself between autism epistemologies, straddling modernist
notions of objectivity, duality, and progress on one hand, and postmodern traditions, on the
other, which deconstruct the entire modernist enterprise, what are my current beliefs and
assumptions about autism? Furthermore, what are some of my anxieties about entering the field
of disability research?
What is an Auto-ethnography?

Auto-ethnography is a qualitative method of inquiry that has been in circulation for at
least two decades. An array of expressions have been used to describe this methodology,
including personal narratives, narratives of the self, self stories, first person accounts, personal
essays and auto-observations (Ellis & Bochner, 2000). Denzin and Lincoln (2000) have
incorporated this method into the Handbook of Qualitative Research, and a variety of scholars
are currently using this tradition to explore a variety of different issues (Baker, 2001 ; Berger,

10 The author has intentionally capitalized Truths to refer to common, taken-for-granted, universal, stable Truths that
guide our thinking and interpretations of the world. The author uses truths (with a little t) to refer to local and
particular truths that are open to mutation and therefore do not have a teleological endpoint.


2001; Ellis, 1999; Kaufmann, 2005; Magnet 2006; Neville- Jan, 2004; Smith, 2001, 2005; Wall,

This emerging methodology is gaining attention in the academic field as it is founded on
postmodern criticisms centered on arguments surrounding the "crisis of representation" which
challenges the value of token reflection that has often been included as a paragraph (at most) in
an otherwise neutral and objective manuscript (Wall, 2006). Questions encompassing this new
skepticism include political and cultural representations surrounding not only who should
represent whom, "but what should be the forms of representations in relation to specific
hegemonic practices of governmentality, including the practices of the social sciences" (Clough,
2000, p. 283). As a result, numerous authors point to the need for "genuine reflectivity" in social
science research.

An autoethnography is a layered account of the personal that acknowledges the
multiplicity of selves, as the researcher/author draws on as many resources as possible in the
writing process, including social theory and lived experience (Magnet, 2006). It can be seen as a
genre of writing and research that connects the personal to the cultural. Each of the three
components, auto (self), ethno (culture), graphy (research process) vary in emphasis. The goal of
reflective research is not to transfer information from one party to another, but rather to move
from the traditional monologue of scientism, which typically shuts down different avenues of
interpretation, to a dialogical approach that opens up the possibility for alternative meanings
(Ellis & Bochner, 2007). Elsewhere Ellis and Bochner (2000) have argued the goal of narrative
inquiry is to fuse the literary with the scientific, to create a social scientific art form, thereby
revealing the role and expertise of the researcher/author who created the work, rather than
constructing his or her absence.


What Determines a Good Autoethnography?

In a discussion on what establishes a good autoethnography (i.e., the issue of validity),
Bochner (2000) suggests narratives should be written in a concrete and detailed fashion that not
only relay "facts" but also describe feelings and the intensely driven emotions of people coping
with certain life contingencies. Second, the structure of the narrative should be highly complex,
modeling the nonlinear process of memory work, shifting from past to present and back to the
past. Bochner (2000) cites Kierkegaard (1957) who states, life must be lived forward but can
only be understood by reflecting back. Third, the trustworthiness of the author must be made
transparent. In other words, the evocative self needs to be displayed on the page, thus, creating a
cultural script that resists representations and depicts the contradictory nature of human
experience and the various layers of subjectivity. Fourth, good narratives should paint two
selves: the historical and present self, and the self re-imagined or transformed by the experienced
"crisis." Fifth, the author must hold an ethical standard of self-consciousness, being sensitive to
how other people are represented and the kind of person one becomes through the process of
storytelling. Lastly, Bochner, (2000) states an excellent autoethnography is one that moves the
reader in the heart as well as head.

In light of the above criteria, I will attempt to give a detailed (yet inescapably partial)
account of my journey as a "becoming" academic and my current state "between
epistemologies". As the purpose of the autoethnography is to extract meaning from experience
rather than to describe experience as it was exactly lived (Bochner, 2000), the self narrative will
not be told in a chronological fashion, but rather will move back and forth between the past and
present examining images and memories through the lens of the present and the present through
the lens of the past.


Conducting Self-Reflective Research

For the most part, reflexivity is now viewed as an accepted method of qualitative research
that can be used to explore and expose the politics of representation, to better represent
difference and to establish ethnographic authority (Pillow, 2003). Researchers using critical,
feminist, race-based, or poststructuralist theories may use reflectivity as a tool to better represent,
legitimize or interrogate their data. Although reflectivity is gaining popularity and recognition in
the social sciences and humanities, Pillow (2003) contends that most researchers use reflectivity
without defining how they are using it, operating under the assumption that reflective research is
an accepted methodology with a set of standards put in place for how it should be used when
conducting critical qualitative research.

Pillow (2003) cites Spivak (1988) who argues "making positions transparent does not
make them unproblematic" (p. 183). Reflective research as a means of discovering self-
knowledge and truth is difficult to discuss and critique as it is often seen as an attack on the
author. Thus, Pillow urges researchers who appropriate reflectivity to ask what these bodies of
writing open up and close down in terms of enhanced understanding and questioning after
reading the text. A good piece of reflective research should account for multiplicity without
making it singular and acknowledge the unknowable without making it familiar. Therefore,
"reflectivity of discomfort" incorporates not only the reflective component but a deconstructive
element as well. Although reflectivity helps the researcher and his/her audience to understand not
what we know but how we think we know, the deconstructive component illuminates that how
we think we know is neither transparent nor innocent, and challenges not only the constructs of
the author but those of the reader as well. It urges the reader to analyze, question and re-
interrogate his/her own knowledges and assumptions throughout the entire reading process.


With this in mind, the present research attempts to use reflectivity of discomfort. The
intention of this writing is to continually urge both the author and reader to challenge current
representations, by acknowledging that this body of writing incorporates multiple voices, figures
and histories. Reflectivity of discomfort pushes the writer and his/her audience toward the
uncomfortable and unfamiliar, identifying practices of rupture in language and techniques so that
deconstruction is possible. At the same time reflectivity of discomfort acknowledges the political
need to represent and find meaning, but simultaneously recognizes this knowledge as always
partial and tenuous.
Articles of Reflection

The author will use the discussion of dominant autism discourse (Chapter 2), the
alternative postmodern autism framework — including authors such as Deleuze and Guattari
(1987), Basaglia (1987) and Foucault (1965, 1972, 1980, 2003) (Chapters 5, 6, 1)— and the
personal accounts of people with the PDD label (Chapter 1 1) to reflect on how these three
discourses influenced the author's thoughts, perceptions and beliefs about "self as a practitioner"
and ideas surrounding autism and pathology. Other articles of reflection include an eclectic array
of media, empirical research and theoretical writing. These include the following:

Metz, Mulick & Butter (2005). Autism: A late-20' h -century fad magnet. The chapter discusses
various modalities used to treat or "cure" autism that are based on faulty logic and that lack a
base of empirical evidence. The authors point to the need for more controlled, experimental
methodologies and urge consumers and professionals in the industry to be critical of these
"miracle cures".


Maurice (1993). Let me hear your voice: A family 's triumph over autism. This book is a story
of a mother's personal account of her daughter's recovery from autism through exposure to
behavioural interventions.

Baggs (2007). In my language. This is a video of a person with autism who discusses
contemporary issues related to thought, intelligence, personhood and language.
Herzog (1974). The enigma ofKaspar Hauser (Film). The film follows the real story of
Kaspar Hauser, who lived for the first 17 years of his life in a cellar without human contact.
Being isolated from society, Kaspar Hauser learns to walk and enters the town of Nuremberg
where the unraveling of societal perceptions of madness and abnormality emerge.
Primary Analysis:

A detailed reading of the abovementioned material for reflection will be conducted. A
comprehensive electronic notebook of my own personal reflections of the readings will be used
as the main article of analysis. The reflections link contemporary issues in dominant autism
discourse to my own personal experiences with abnormality, challenging my own assumptions
and inconsistencies about the subject matter.
Parker 's (2005) Discourse of Analytic Reading:

Parker (2005) summarizes six stages in discourse analysis (spark, ignition, combustion,
fuel, flight, landing), the first three of which will be used to foster dialogue and debate within my
critical self-reflections 1 ' .

1 . Spark. What is intriguing about the text? What do you find puzzling, fascinating and/or
odd? What questions are you provoked to ask by the text? What kind of a person must
you be for this text to make sense?

11 Although I am using the first three of Parker's (2005) six stages of discourse analytic reading, it is important to
emphasize that 1 am NOT conducting a discourse analysis, but rather Parker's questions will be used to provoke and
challenge my current consciousness and ways of thinking about the texts.


2. Ignition. What is suspicious about the text? Elaborate and point out every taken for
granted assumption you refuse to accept within the text.

3. Combustion. Identify the objects that are described in the text. Who is constructed as an
active agent? Who is constructed as passive? What constructed realities must we
appropriate for this text to make sense to us? What kind of people does this text attract
and what might be said for those who agree with the text versus those people who

Evaluation of the Autoethnography:

Since the epistemological and ontological assumptions driving the autoethnography are
different than those underlying scientific research, Wall (2006) argues that it does not make
practical sense to use traditional "scientific" criteria to judge the value of personal text. Based
on Wall's contention and taking into consideration the work of Ellis (1999), Kincheloe and
McLaren (1998), Jones (2005) and Richardson (2000), it is more practical to evaluate
autoethnographic works in terms of the following criteria.
Tests of Validity:

1 . Substantive Contribution. Does this piece contribute to our understanding of social
life? (Richardson, 2000). Does this piece challenge current epistemologies? (Jones,

2. Aesthetic merit. Does this piece succeed aesthetically? Is the text artistically shaped,
satisfyingly complex, and not boring? (Richardson, 2000).

3. Reflectivity. How did the author come to write this text? How has the author's
subjectivity been both a producer and a product of this text? (Richardson, 2000).


4. Impactfullness (Richardson, 2000) or Catalytic Validity (Jones, 2005). Does this affect
me emotionally and/or intellectually? Does it generate new questions, move me to action,
or lead to personal transformation?

5. Express a (subjective) reality (Richardson, 2000) or Verisimilitude (Ellis, 1999). Does
this text embody a fleshed out sense of lived experience? Does the piece evoke in the
reader a feeling that the experience described is lifelike, believable, and possible?

Tests of Reliability:

1 . Trustworthiness. Are constructions reasonable to those who constructed them?

(Kincheloe & McLaren, 1998).
Tests of Generalizability:

1 . Connectedness (Ellis, 1999). Does the story speak to the reader's own experiences or

the lives of others?


Chapter 2: Dominant Autism Discourses
What is a Discourse?

Language is systematically organized around a series of finite statements where
conditions of existence are grouped and defined. This space of meaning making is not ideal or
timeless, but rather embodied in a specific period of time arising out of a given social, economic,
geographical, and linguistic arena. It is these systems of meaning that define a discourse.
Foucault (1972) argues that statements devising a given meaning system become popular
representations of lived realities offering positions of power to certain categories of people and
disempowering others. From this perspective what is of interest is not what discourse is the most
representative of reality, but rather how and why specific discourses emerge during a specific
period of time, and what function these discourses serve in relation to society at large (Foucault,
Brief Historical Review

Infantile autism, pervasive developmental disorder- residual type, childhood
schizophrenia and autistic psychoses are terms used over the years to refer to what is currently
considered autistic disorder. Leo Kanner (1943) is regarded as the pioneer of autism diagnosis,
giving a name to the disorder a little over 50 years ago. His detailed case history account of 1 1
children between the ages of 2 and 8, illustrated how these children shared unique and previously
unreported patterns of behaviour, including social remoteness, obsessiveness, stereotypy, and
echolalia. Although there was some debate over whether these characteristics were symptoms of
childhood schizophrenia, Kanner (1943) argued that due to the unique and shared symptoms of
these 1 1 children, diagnosis should be seen as something distinctively different from current
pathologies. Early descriptions of infantile autism have remained relatively stable since the


Kannerian days, closely paralleling current diagnostics found in the DSM-1V-TR (APA, 2000).
However, understanding the complexities of the disorder continues to be an art and science in
rapid evolution (Filpek et al., 1999).

Characteristics of Pervasive Developmental Disorder
Most professionals working in the field of autism would agree with the following two
notions. First, autism can be described in terms of three different but interdependent pathologies:
a neurological disorder related to abnormal brain development; a psychological disorder linked
to cognitive, emotional and behavioural development; and a relationship disorder resulting from
a failure to acquire normal socialization patterns (Kabot, Masi & Segal, 2003). Second, autism is
a spectrum disorder, meaning that although children share a core deficit in forming relationships
and communicating, expression of these symptoms manifests itself differently in each individual
case, leading children to display a range of symptoms and co-morbid conditions.
Predominant Pervasive Developmental Framework

To date the most frequently cited definition of autism is found in the DSM-IV-TR (APA,
2000). Five disorders are described under the broad term Pervasive Developmental Disorder,
which include Autistic Disorder, Retts Disorder, Childhood Disintegrative Disorder, Aspergers
Disorder and Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS) (APA,
2000). Although these five disorders differ in relation to age of onset, etiology, epidemiology,
and associated conditions, similarities exist, as all children falling under the autism spectrum
deviate significantly from their predicted developmental level, displaying qualitative
impairments in at least one of the three following areas: reciprocal social interaction,
communication skills, and behaviour variability.


Although it is argued that each disorder on the spectrum is distinctly different, in practice
these similarities commonly result in definitional and diagnostic confusion. The three disorders
most frequently subjected to diagnostic uncertainty include Autistic disorder, Aspergers and
PDD-NOS (Kabot et al., 2003). Professionals will commonly use the vague term autism to
describe the most prevalent disorders on the autism spectrum: Autistic Disorder, Aspergers
Syndrome, and PDD-NOS. Similarly, some professionals do not see PDD-NOS as a separate
disorder but rather place children in this category when they fall within the spectrum, but do not
meet full criteria for autistic disorder (Kabot et al., 2003). In practice, PDD-NOS and Aspergers,
and Aspergers and High Functioning Autism are used interchangeably, adding confusion
regarding the implications of a specific diagnosis on the autism spectrum. This further
contributes to perplexities surrounding epidemiology, etiology, and treatment (Kabot et al.,
Prevalence of Pervasive Developmental Disorder

The earliest autism epidemiology studies displayed an infantile autism prevalence rate of
4-5 cases per 10,000 (Lotter, 1966, as cited by Filpek et al., 1999). To date, autism is more
prevalent in the population than childhood cancer, diabetes, spina bifida, and Down syndrome. In
a recent prevalence study conducted by Chakrabarti and Fombonne (2005), a rate of 58.7 per
10,000 (95% 0=45.2-74.9) was found for all autism spectrum disorders. Yet, it is still unclear


whether the upward trend in prevalence rates (the proportion of people in a population identified
with the disorder) can be attributed to an increase in incidence (the number of new cases
occurring in a population over a period of time) (Fombonne, 2003) or to other reasons, such as
broader clinical phenotype, improvements in case ascertainment, and an increased awareness of
pervasive developmental disorders in both the general public and professional community. These


factors may partially account for the artificial impression autism spectrum disorders are on the
rise. Regardless of whether autism incidence rates are also increasing, most professionals agree
this increase in numbers affirms the need for improved early screening and diagnosis, so that
these children can be provided with intervention as early as possible (Filpek et al., 1999).

Additional characteristics in identified samples of autism indicate 70% of identified cases
also have an intellectual impairment, 30% have a mild-moderate intellectual impairment, and
40% are labeled with a severe/profound intellectual disability (Fombonne, 2003). Furthermore,
sex also seems to influence autism trends, as the overall ratio of males to females with a
diagnosis is approximately 3:1 to 4:1 . Interestingly, this ratio appears to vary according to IQ,
ranging from 2:1 in those individuals identified with a severe intellectual impairment to more
than 4:1 in those children with average or near average IQ (Bryson, 1997; Ehlers & Gillberg,
1993; Filpek et al., 1999). Some author's postulate fewer females with average IQ are diagnosed
with PDD because they are more socially adept than males with similar IQ scores (Filpek et al.,
1999; Volkmar, Szatmari & Sparrow, 1993).
Etiology of Pervasive Developmental Disorder

Current literature suggests PDD results from a dysfunction in the central nervous system
that most likely has a genetic basis (Blaxill, 2004; Kabot et al., 2003; Piven, 1997). The
consensus in the literature suggests that unidentified factors within the prenatal and postnatal
environment may trigger the onset of autistic symptoms. Although studies examining brain
functions and structures exist (Courchesne et al., 2001; Iverson, 2001), explanations about
behavioural symptoms in relation to the neurobiology of autistic disorder remain unclear (Kabot
etal., 2003; Piven, 1997).


Genetic research using linkage analysis implicates Chromosomes 7 and 1 5 as possible
defective genes related to autism. In a study by Ingram (as reported by the National Institute of
Child Health and Human development), 40% of people with autism displayed a change in one of
the two copies of the HOXA1 gene, located on chromosome 7. This was compared to 22% of
people without autism, who did not have a family member with an autism diagnosis, but showed
the same change. Furthermore, 33% of family members of people with autism who did not have
a diagnosis themselves also displayed a change in this gene. From these results, researchers
postulate the HOXA1 gene may not be a causal gene for autism, but may in fact be an autism
susceptibility gene. This suggests that individuals with a HOXA1 abnormality may make a
person more susceptible to developing the condition (Kabot et al., 2003).

Treatments for Pervasive Developmental Disorder
In the past autism has been viewed as a severe, lifelong, developmental disorder as those
affected with the condition will require unending support and guidance throughout their entire
life (Roger, 1998). Recently, this assumption has been put into question as a result of research
indicating the progress young children with autism can make in certain early intervention
programs. As a result, a new nation-wide movement highlighting the importance of providing
more systematic and focused interventions for these children has occurred. Although a variety of
strategies have been used to treat children with autism, including medication (Fein et al., 2001),
gluetin-free casein-free diet (GFCF) (Panksepp, 1 979), auditory integration therapy (Bernard,
1993, as cited by Metz et al., 2005), facilitated communication (Biklen, 1997, 2003), Floortime
(Greenspan, 2000, as cited by Metz et al., 2005), and TEACCH (Schoper, 1970, as cited by Metz
et al., 2005), Lovaas' (1987) Early Autism Project, based on the provision of intensive
behavioural treatment was the early intervention method associated with the strongest supporting


scientific evidence (Metz et al., 2005). Lovaas (1987) study initiated the rise of behavioural
interventions in the autism industry and motivated other researchers in this area to replicate his
promising results.

Lovaas (1987) conducted a non-randomized control study consisting of children
diagnosed with autism, between the ages of two and three. Children were assigned to three
different conditions depending on the number of staff available in the area to render treatment.
The conditions consisted of an experimental group (n=19) receiving more than 40 hours of
intensive behavioural treatment per week, a minimal control group (n=19) who received less than
10 hours a week of intensive behavioural treatment and a second control group (n=21) who were
also receiving minimal treatment, but were not treated by the Early Autism Project. All treatment
methods lasted for at least two years (Lovaas, 1987). Pre-treatment measures revealed no
significant differences between the three groups of children; at two year follow-up, 47% (9 of
19) of children in the experimental group achieved normal intellect and educational functioning
and were mainstreamed into grade one classrooms, compared to only 2% of the controls (Lovaas,
1987). Furthermore, McEachin, Smith and Lovaas (1993) conducted a follow-up study of the
same children several years after the last assessment (mean age =13) and found the participants
in the experimental group with "best outcome" had maintained their previous level of intellectual
functioning, which was on average 30 points higher than that of the control groups.
Effectiveness of Early Intensive Behavioural Interventions

Lovaas' (1987) groundbreaking research was the first empirical study to suggest the
prognosis of autism may be significantly more optimistic than once thought (Eikeseth, 2001;
Klinger & Dawson, 1997). A variety of assumptions surrounding autism treatment surfaced as a
result of Lovaas' (1987) work. These assumptions or "Truths about autism" continue to influence


professionals, service providers, and families' perceptions of autism, often guiding their practices
and treatment selections. First, as 47% of the children in the treatment group attained normal
functioning and were considered indistinguishable from their peers at follow-up, the Lovaas
(1987) study provided strong evidence to support the use of behavioural interventions for
children with autism, which has recently been supported by various other authors (Anderson,
Avery, & DiPietro, 1987; Birnbrauer & Leach, 1993; Cohen, Amerine-Dickens & Smith 2006;
Eikeseth, Smith, Jahr & Eldevik, 2002; Ozonoff & Cathcart, 1998; Sheinkopf & Siegal, 1998;
Smith, Groen & Wynn, 2000). Second, as the study indicated the experimental group (receiving
40+ hours a week of behaviour therapy) outperformed control group 1 (receiving behaviour
therapy less than 10 hours a week), Lovaas' (1987) research also suggests the more intensive the
intervention the better the outcome. Again further research appears to support this assumption
(Cohen et al., 2006; Smith et al., 2000). Furthermore, when examining the children in Lovaas'
(1987) experimental group, he noted the children were more likely to achieve "best outcome" if
they were younger and/or had higher IQ scores prior to treatment administration.
What Happened After Lovaas ' (1987) Study?

Even though Lovaas' (1987) study was conducted 20 years ago, his research is still used
as a benchmark to measure treatment success. Following his study a variety of researchers have
attempted to replicate his findings (as mentioned above). Studies slightly modifying Lovaas'
(1987) treatment strategies, yet still falling under the broad rubric of behavioural interventions,
have consistently demonstrated a positive relationship between behaviour therapy and child
outcome (specifically in relation to IQ and adaptive functioning) (Anderson et al., 1987;
Birnbrauer & Leach, 1993; Cohen et al., 2006; Howard et al., 2005; Ozonoff & Cathcart, 1998:
Sheinkopf & Siegal, 1998; Sallows & Graupner, 2005; Smith et al., 2000).


Anderson et al. (1987), Bimbrauer and Leach (1993), Ozonoff and Cathcart (1998) and
Sheinkopf and Siegal (1998) conducted partial replication of Lovaas' (1987) study; however,
children in these replication studies received fewer hours of treatment (18 to 25 hours versus 40
hours) and typically had less experienced trainers conducting the therapy (Smith et al., 2000).
The children in these studies displayed significant increases in non-verbal IQ (22 to 29 points),
but all other gains made by these children during treatment were smaller than those reported in
the Lovaas (1987) study.

To address some of the issues mentioned above, as well as concerns about the lack of
methodological rigor of the Lovaas (1987) study (i.e., selection bias, instrumentation [refer to
Gresham and MacMillan, 1997 for details]), Smith et al., (2000) conducted a replication study.
Children were matched based on diagnosis (PDD-NOS versus Autistic Disorder) and IQ, each
pair being randomly assigned to either an intensive treatment group, receiving 30 hours a week
of intervention for 2-3 years, or to a parent training group where the parents were taught
behavioural principles to help their child acquire skills. Parent training occurred approximately 5
hours a week for 3-9 months. In both the treatment and the parent training groups the children
received intervention based on the Lovaas et al. (1980) treatment manual.

Pre-treatment measures revealed the children to be closely matched on all variables with
no statistically significant between-group differences. At follow-up the intensive treatment group
outperformed children in the parent training group on measures of intellect, visual-spatial ability,
language and academic achievement. However, intensively treated children did not differ from
children in the parent training group on standardized tests of behaviour problems and adaptive
functioning in every day settings. Interestingly, although various studies have confirmed the
significant gains children with autism can make in behavioural programs, none of the above


existing studies have been able to replicate the outstanding treatment outcomes achieved by the
children in Lovaas' (1987) original experimental group (Anderson et al., 1987; Birnbrauer &
Leach, 1993; Ozonoff & Cathcart, 1998: Sheinkopf & Siegal, 1998).

Truths within Dominant Autism Discourse
The abovementioned contemporary autism literature is used to drive parents',
practitioners', policymakers' and society's perceptions of what it means to have a diagnosis of
autism. These current modes of thinking are summarized below:

• PDD is considered a mental disorder; a deviation from what is considered ''normal".
Diagnosis is premised on the person meeting a specific number of behavioural criteria
found in the DSM-IV-TR (APA, 2000).

• PDD is most commonly seen as a neurological deficit that has a genetic and biological

• Diagnosis of PDD is currently on the rise. Prevalence rates are increasing at a greater
than expected frequency.

• PDD is in need of intervention. Currently, empirical evidence suggests Early Intensive
Behavioural Intervention (EIBI) is the most successful approach to reducing autism

• A window of opportunity exists for children with PDD, meaning that exposing young
children (before the age of 7) to treatment can make the difference between a child who is
severely disabled and one who has some degree of normal functioning.


Second Interlude

It has been almost a year since I decided to alter my academic trajectory, abandoning everything
I had come to know as "true" and diverge into unknown territory. Since this time, although I
have given my subject position a great deal of self-reflection and critical thought, I have been
unable, on paper, to clearly articulate my subjective status.

The idea of sharing my most personal and intimate experiences, tracing the series of events that
have ultimately led me here, currently writing this autoethnography about children with autism,
has been a constant struggle for me. I feel as though I cannot sufficiently deconstruct the
external and internal structures influencing my thought process, in order to clearly articulate
why I have this desire and drive to "help people. "

I could attribute this difficulty in self-reflective writing to my inability to clearly explain anything
in terms that others will understand. I frequently experience the "tip of the tongue phenomenon "
where I can 't seem to find the "perfect" word to adequately explain any feeling, personal life
event or experience.

I could also attribute this difficulty to my poor writing skills and the series of run-on sentences
and awkward phrases that I only become aware of once I have distanced myself from a piece of
writing; reviewing something I have written several months prior, in which the dreaded personal
criticisms emerge "did I actually write that? " "I can 7 believe someone else had to read this
crap! "

Although the above do contribute to my anxieties about this reflective writing piece, my main
issue with this autoethnography is the idea of writing for an audience. It becomes easy to
distance myself from the subject matter, to study a group of people in which you pretend to have
no invested interest, and then talk about that group as if you are "the expert"; knowing the
subject matter better than the subject can ever know and describe him or her self- — after all you
are the objective and unbiased researcher! Yet, it becomes quite difficult when the subject of
study is, in fact, your self. Everything immediately becomes so personal; the designated
researcher role becomes blurred. Now I am not only the researcher, but also the "object of
study" as my life, and most intricate thoughts and experiences become judged, condemned and
critiqued, not only by myself but by the reader as well!

The thought of stating my subject position as a white middle class female is absolutely
horrifying. I know my femaleness has become an inherent part of my identity (and I use this term
very loosely). I have either conditioned myself to take on traditional female qualities or they are
indeed innate. Yet the nature-nurture debate is not of interest to me; what is of importance,
however, is why I do not want to discuss my position as a female. It seems that as soon as I
acknowledge my femaleness I am judged, or as soon as I identify myself as being female, my
female qualities surface and I become this over-emotional basket case. Yes, it is a struggle to
find my own voice as a female in a predominately male dominated hegemonic society, yet for
myself, coming from a discipline encompassing 98% of its students as female, it does not seem to


be an issue of finding my voice in a male dominated society, but rather finding my voice at all. I
find myself silencing my own knowledge, beliefs, desires and questions, in fear of not only being
identified as an imposter, but also offending and displeasing others by being critical of their
work and practices.

Public speaking has never been my strength. Throughout my undergraduate and graduate
degree, I continue to feel like an "imposter", always thinking everyone else has something more
valuable and intelligible to say than myself; thus, rendering me mute for the most part of my
educational experience. Anxieties surrounding my competence as an academic continue to
escalate as I climb my way up the academic ladder. Although I feel as though I can save face and
pretend to be insightful and intelligent, I continue to fear that someone will one day uncover the
truth; that I am merely an expert at playing the academic game and have no real, unique
thoughts of my own.

Notions of being female, femaleness, and womanhood in Western society carry with them a
variety of different assumptions. For myself, ideas surrounding "womanness" encompass
thoughts related to external beauty, selflessness, responsibility, emotionality, nurturance and
extreme sensitivity towards others.

It is interesting that prior to this quest of self-exploration; I have come to accept many of my
female qualities as an innate part of my existence. I am female. The additional X chromosome is
the explanation for many of the traditional feminine qualities I encompass, which are thought to
be a static and internal part of my female existence.

I have a malleable personality that allows me to easily adapt to various situations so that I am
able to fulfill my role of "pleasing others. " I have a tendency to want to help others; an over-
active theory of mind (continuously ensuring that my actions do not in any way, shape or form
upset others); an ability to listen, instead of speak up; I have a self-sacrificing personality (going
to any extreme to make the people I love happy); and a habitual ability to assume responsibility
for my actions even when others are involved. These qualities, put together, structure my internal
personality or unique self, which has been left seemingly unquestioned up until this point of my

If I was to examine the social structures that have influenced the above, traditionally female
qualities I have appropriated throughout the last 25 years of my life, it would be difficult, or
rather nearly impossible to peel away the layers of social influence in order to get to the
"substance" that lies beneath (if there is some existence that does, in fact, lie beneath these
layers). Yet, when I reminisce about my personal experiences, some aspects of my life provide an
incomplete and partial explanation of the emergence of these female qualities.

If I were to trace the emergence of my "selflessness", it would likely stem from observing my
mother. Throughout my childhood she has always put her family first; her own personal


ambitions, desires, passions being neatly tucked away from our view. She gave up her
aspirations, largely ignoring her own intellect and capabilities, to live vicariously through my
father, whose intellect and capabilities were never interrogated or even questioned. Giving up
everything for my father 's success, moving across the country, isolating herself from her own
family and friends, she raised my sister and me, for the most part, alone, while my father brought
home the "bread". Watching my mother go above and beyond her duties and obligations of
motherhood, I became consciously aware of my responsibilities as a female; to care, to be
compassionate, to be self-sacrificing and to covertly hide one 's own emotions, desires, passions
and ambitions.

Chapter 3 : Autism through the Modernist Lens
Rationalism, Objectivity and Language as a Medium for Generating Knowledge

Psychology as a science can be seen as a by-product of cultural modernism (Gergen,
2001). Modernism can be traced back to the age of Enlightenment, which encompassed notions
about the transcendental self, that is, about a timeless and universal human nature. From this
Enlightenment standpoint and the program of science it supported, reality is measurable and an
ultimate, stable, ahistorical framework can be established to determine what counts as reason,
Truth, knowledge and correct action.

Gergen (2001) identifies three broad assumptions — reflective of this modern cultural
heritage — which are pivotal to modern practices in the psychological sciences.

1. Individual knowledge exists. Within this paradigm it is believed that inside each citizen
lies the sacred sanctuary of the mind. The mind, in this instance, is portrayed as a closed,
bounded system operating independently of external influences. Unearthing these homogenous
mental capacities, which may include cognitive schemas, information processing mechanisms,
and storage and retrieval structures, provides a gateway into the world around us. Through the
discovery of fundamental mental processes, a degree of prediction and control of human
behaviour can be established. It is thought that this incremental understanding of the stable
structures of human thought move us progressively towards a more "ideal society" as it


produces techniques used to cure mental illness, improve education, reduce crime and create a
life filled with increasing satisfaction (Gergen, 2001).

2. The belief in an objective and knowable world. Descartes' dualism suggests a
distinction can be made between the interior world of the mind and the exterior world of material
objects. Although this separation exists, it is thought these two domains work together
simultaneously providing information to each other. In other words inquiry into the mind is
essential to understanding one's actions in the world, and behaviours exhibited by an individual
are fundamental to understanding one's mental processes. This bi-directional relation between
mental processes and environmental events is guided by three principles: 1) mental events are
biological processes at a higher level of abstraction and are therefore available for objective
study; 2) internal processes are causally related to environmental inputs on one hand, and
behaviour consequences on the other; 3) controlled empirical analysis is superior to all other

methods when attempting to capture whether these causal relations exist in reality (Gergen,


3. Language is the bearer of truth. Words signify internal conceptions, as they stand as

external markers for ideas within the individual mind. It is only through language that these

internal conceptions can be made known to others and that thoughts within the mind can be

conveyed in the outer word (Gergen, 2001).

Understanding Autism through a Modernist Lens

Much of the autism literature to date is guided by the abovementioned modernist

assumptions articulated by Gergen (2001). Empirical evidence supports the notion that autism is

a neurological disorder. Current research in the area suggests children with autism display
deficits in their ability to process information. Impairments in executive functioning associated


with frontal lobe dysfunction are hypothesized to contribute to this information processing
impairment (Bebko & Ricciuti, 2000). Dominant autism neurological literature consistency
operates under the modernist assumption that within every individual lies the sacred sanctuary of
the mind. By stating children with autism have frontal lobe impairments homogenous structures
of the autism mind are targeted and identified. Strategies and techniques are then developed to
enhance brain stimulation in the frontal area. In this instance, empirical research provides a
window into the unknown, better equipping society with the skills needed to predict and control
the autism population's behaviour.

Second, contemporary autism literature operates under the assumption that autism is a
real phenomenon and controlled experimental methodologies will enhance our understanding of
the unique characteristics specific to autism, providing insight into the best way to treat the
disorder. Current research indicates signs of autism become apparent in the first two years of a
child's life. Early screening measures such as the Autism Diagnostic Interview- Revised (ADI-R)
(Lord, Rutter & Le Couteur, 1994), the Autism Diagnostic Observation Schedule (ADOS) (Lord,
Rutter, DiLavore Risi, 1999), the Checklist for Autism in Toddlers (CHAT) (Baron-Cohen et
al., 2000), the Screening Test for Autism in Toddlers (STAT) (Stone, Coonrod & Ousley, 2004),
the Pervasive Developmental Disorders Screening Test-II (PDDST-II) (Siegal, 2001) and the
Behaviour Observation Scale for Autism (Freeman et al., 1978) are currently used to detect
autistic symptoms. Although these screening measures exist and are utilized, Bryson, Rogers and
Fombonne (2003) argue that problems with measurement sensitivity may result in higher rates of
false negatives (versus false positives). Most of the literature in this area points for the need to
develop reliable and valid assessment instruments so children with autism can be identified early
and appropriate intervention can be provided. Furthermore, the National Institute of Health


(NIH) report identified several methodological and statistical issues needing to be addressed in
future autism research. All six suggestions articulate the dire need for more well-controlled
experimental research designs where participants are randomly assigned to various conditions in
a controlled, objective fashion (see Gresham & Macmillan, 1997, p. 185). The abovementioned
literature takes a realist position towards the world suggesting PDD exists "out there" and is
available for observation though the use of controlled empirical analysis. It assumes that by
utilizing controlled experimental methodologies we will be able to objectively capture what lies
beyond our own subjectivities.

People labeled with PDD are in constant mutation both definitionally and temporally as
characteristics of the disorder continue to evolve and be fine tuned. Within the dominant autism
literature these mutations are portrayed as extensions of previous scientific discoveries adding
onto existing frameworks in an incremental fashion. The improved understanding and
explanation of PDD diagnostics, etiology and effective procedures used to treat labeled
individuals, suggest that our enhanced knowledge of the disorder will continue to improve the
lives of people with PDD and their families. Again this points to the assumption of progress; as
time moves forward our understanding of the disorder also enhances. It is through this enhanced
understanding that we are able to develop appropriate assessment instruments and individualized
treatment packages that are effective and efficient.

The third assumption of modernism, that language is the bearer of truth, also exists within
contemporary autism research. Children with a diagnosis of autism typically display impairments
in language, communication and social interaction. Standardized tests used to assess a person's
cognitive capacity are heavily reliant on the use of language (both expressive and receptive). As
the ability to understand and produce dominant language patterns is a key component to


evaluating intellectual development, individuals who display a developmental lag in language are
also commonly diagnosed with an intellectual impairment. Alternative techniques have been
developed to help children with PDD that lack skills necessary to communicate verbally. These
include PECS (Picture Exchange Communication System), sign language, facilitated
communication and augmentative communication systems. Yet all of these instruments fall
within the dominant regimes of language (refer to p. 40-41 for details).

Third Interlude

I recently attended a 2-day PECS training workshop. PECS is a unique augmentative/alternative
communication training protocol that is predominately based on Skinnerian philosophy of verbal
behaviour. The manualized training program is based on the principles of applied behaviour
analysis and offers an intensive, objective, detailed procedural account of how to teach
communication to people who are currently non-verbal.

The audience, predominately made up of behaviour therapists, support workers, educational
assistants and graduate students, were highly enthusiastic about the idea of teaching clients a
rudimentary form of communication, since many of the people these audience members support
did not have an intelligible medium for articulating their wants, needs and desires. However,
some skepticism was present in the audience, particularly pertaining to anxieties about the
intrusiveness of the method (e.g., the two person prompt) as well as feasibility issues including
availability of staff, maintaining consistency, the generalizability of the skill to other settings and
people, and the overall maintenance of the communication system.

Uncertainty, again, was met with traditional notions of scientism, as the PECS trainers stressed
the need to be objective through data collection. If the data displayed the training to be
ineffective, the audience was encouraged to act logically and rationally by conducting a
functional analysis, in order to identify the antecedents and consequences that may be
maintaining the inappropriate behaviour.

The PECS training focused on universal administration; it is the techniques of applied behaviour
analysis that are effective, leading any member of the audience who is fluent in behaviour
principles to carry out the training.


Chapter 4: The Postmodern Discourse as a Space of Resistance

Approaching the Age of Uncertainty: The Death of Man

Today we have entered what some call the age of uncertainty as disputes concerning

absolutivism versus relativism and foundationalism versus fragmentation have emerged in

broader discussions surrounding the formation of knowledge and what can be considered True

representations of external reality (Falzon, 1998). This emerging skepticism has led to the re-

theorization of many taken-for-granted assumptions of the social sciences, including the belief in

an objective reality, ideas surrounding the subject as a stable, coherent, rational and timeless

being, and language as a medium for shared understanding. This intellectual enterprise

interrogates the existence of ultimate foundations of knowledge which allow us to organize and

comprehend the totality of things.

Currently, intellectuals such as Gergen (2001) and others (Basaglia, 1987; Danforth,

1997; Foucault, 1965; Parker, 1995; Skrtic, 1995) articulate their concern with appropriating the

beliefs, values and opinions of the dominant society. Scheper-Huges and Lovell (1987)

eloquently illustrate this apprehension by stating, "psychology is the phantom of objectivity; a

mask that conceals more than it reveals" (p. xxiii). Foucault (1972) also nicely illustrates this

concern in his book The Archaeology of Knowledge when he states,

True discourses, liberated by the nature of its form from desire and power, is incapable of
recognizing the will to truth which pervades it; and the will to truth, having imposed itself
upon us for so long, is such that the truth it seeks to reveal cannot fail to mask it (p. 219).

What the above authors are alluding to is that without maintaining a critical stance, without

deconstructing unquestioned Truths within a given society, we may maintain the existing societal

structures and power hierarchies we wish to eradicate.


Traditionally, the psychological sciences attempt to mimic the models and methods of the

natural sciences to explain human affairs, providing rational explanations for social action, with

the intention of predicting and controlling human behaviour. Falling within a functionalist

framework this position assumes all events and structures within a society are productive and

essential; if they were not they would not exist. This cornerstone idea leads one to assume that all

current aspects of society are indispensable to the larger system, and the existence of all

structures is absolutely necessary for the system to function (Skrtic, 1995). This taken-for-

granted truth is being questioned by many authors (e.g., Basaglia 1987; Danforth, 2000;

Foucault, 1965, 1972, 1980; Parker, 1995; Skrtic, 1995) who currently describe the

psychological sciences as being historically frozen in the empiricism tradition, isolated from

radical theorists and critical thinkers of the past half century, which offer new directions for

radical social change. This proliferation of apprehension with the current techniques and

procedures used in the psychological sciences suggests we are in the midst of a paradigmatic

shift. Skrtic (1995) argues we remain relatively unaware of the dominant discourses we are

currently operating under, as these discourses only tend to surface when they are in the process

of changing.

What is Postmodernism?

Postmodernism can be seen as a space between historical periods. It does not describe the

movement out of modernity into a postmodern world, but rather the term is used to describe a

period of radical indeterminacy (Skott-Myhre, 2007). This space can offer fundamental new

ways to interpret and understand that both resist and exceed our current grasp of the world. It

offers new and exciting opportunities for understanding diversity, otherness and other forms of

life (Falzon, 1998).


Unlike modernists, understanding the totality of human experience and what can be
considered "real" is not of direct interest to postmodernists; rather what becomes important is the
pragmatic capacities of these constructed realities. In other words, postmodernism offers space to
investigate how specific constructions of the world function in society, examining what
organizational structures they support and silence through their existence in society (Gergen
Irrationality, Subjectivism and Language as a Form of Representation

Gergen (2001) offers an alternative postmodern epistemological framework for the
abovementioned assumptions used to guide modern practices in the psychological sciences. He
argues that the belief in the individual rational subject is problematic if not oppressive in its
function. For example, consider the modernist assumption that language is a direct expression of
one's reasoning of the world. As language is a system that produces itself, it both precedes and
outlives the individual, meaning that to speak rationally is to participate in a pre-established
system of language. One is perceived to be rational if one is able to adequately appropriate the
system of words and meaning posed by a given community. For instance, if a scientist is fluent
in the language of science, meaning he/she can eloquently articulate the language within the
scientific discourse, then he/she is deemed to have scientific rationality. Hierarchies of
rationalism are then established based on a society privileging certain language systems over
others. Gergen (2001) sees this as being quite problematic as some individuals are considered
more rational than others and thus deemed more worthy of leadership, social positions and
wealth than people who do not speak the dominant language. He argues these existing
hierarchies in various language systems are not a true product of "pure rationality" but rather
these explanations and descriptions are rhetorically constitutive, based on what is deemed


appropriate language systems within society. As language is a byproduct of human interchange,
there is no independent rational language but rather rationality itself is a result of local,
communal participation. Based on this argument Gergen (2001) contends that there is no
ultimate means of justifying one form of rationality, description or explanation over another.
Postmodernism also opposes the notion of realism or the belief that reality is real and
measurable and that Truth can be uncovered through the utilization of objective, scientific
principles. Again, by unearthing the limits of language, the notion of objective knowledge begins
to decay. To speak of "the mind" or "the world" as an object of study requires language;
therefore to speak of the mind as the mirror of external reality is to disregard the communal
construction of language. Descriptions of the material world do not accurately describe what
exists in reality; rather, these descriptions are an outgrowth of human tradition, a textual genre of
repository statements that constitute a particular tradition. What is considered real and is believed
to be transparent is, in fact, embedded in the socio-historical and culture context in which a given
statement or a set of propositions emerges.

Postmodernism also challenges the third assumption of modernism, that language is the
bearer of truth (Gergen, 2001), with its suggestion that language should be viewed as pragmatic
practice. As stated above, language cannot be regarded as an external report of one's internal
observations and perceptions. Language gains its meaning from its use in action. In order for one
to adequately express oneself in comprehensible terms one must already use existing social
codes developed by the local culture to explain and categorize human behaviour. One is only
able to express oneself and generate mutual understanding, through the local language systems
available in the dominant culture (Skott-Myhre, 2007).


Fourth Interlude

If we were to unpack the PECS training from a postmodern perspective we would begin to be
critical of the assumption that language is an accurate representation of one 's internal thoughts,
feelings and desires and would begin to see language as something that is socially constructed.
This would also bring to our awareness the element of power inherent in the PECS training; that
is, the training is developed and implemented by those who have typical language for those who
do not. Constructing a communication system in this way, we impose our own assumptions on
people who are non-verbal of what can and should be considered appropriate language. This
thereby perpetuates current beliefs surrounding normal-abnormal communication binaries.

Baggs (2007), speaking from the autistic perspective, further elaborates on this problem when
she states "failure to learn your [the dominant] language is seen as a deficit, but failure to learn
my language is so natural that people interpret us [people with autism] as mysterious and
puzzling rather than admitting to themselves that they are the ones confused.'"

The majority of the people participating in the PECS training displayed a genuine commitment
to their clients, wanting to do whatever they could to "help " the client successfully function in
society. Many saw this system of communication as a form of liberation or self-determination,
giving a voice to those who are typically incomprehensible to the rest of the world. At a certain
level of consciousness this is, in fact, the case.

Yet when we examine the function of techniques such as these, we begin to see how we (as a
society) establish certain communication systems as "acceptable " and "unacceptable ". This not
only limits non-linguistic individuals ' capacity to seek their own personal form of
communication, but also places constraints on the linguistic population 's perceptions of normal
speech and communication.

I believe the postmodern argument is extremely valuable, as it forces us to see how we are
constrained by current discourses surrounding normality. Yet, in order for communication to be
successful, mutual understanding needs to occur. I cannot seem to grasp how people with
autism would be able to communicate in a way another can understand if they do not speak a
language that is comprehensible to the majority. The majority, could, in fact, attempt to learn the
language of subordinate groups (i.e., people with autism), but this would involve others being
open and sensitive to this unique exchange of information. Considering we live in a high paced
society that thrives on efficiency and productivity, this is not exactly the most proficient

If we were to view autism languages in the same light as individuals living in North America who
have not yet appropriated English as their first language, we would again begin to see autism
language in a different light. Individuals with autism would not be seen as non-communicative,
but rather incomprehensible to someone who does not speak autism language. This new
construction may increase our attempt to understand the person with autism through their own
language, by examining alternative means of communication including one 's tone and
intonation, body language and gestures, etc.


Yet, I cannot seem to abandon the idea of mutual understanding. If we do not speak the same
language, or if we are unable to understand the other 's language, then how do we communicate
and exchange information? Would the world delve into chaos? Would separatism based on
language be even more distinct, leading the divide between languages to further separate
humanity into multiple categories?

In a quest for equality and acceptance of difference this does not seem like a plausible

Chapter 5: Deleuze and Guattari (1987) Escaping Dominant Conceptualizations of Language
This chapter will provide a theoretical summary of Chapter 4 "Postulated Linguistics," in
Deleuze and Guattari's (1987) A Thousand Plateaus: Capitalism and Schizophrenia, which will
be followed by a theoretical summary of Franco Basaglia (edited in 1987 by Scheper-Hughes &
Lovell) and the anti-psychiatry movement in Italy. A Foucauldian framework of madness and
power will be discussed in Chapter 7.

These theoretical frameworks have been selected to further explore issues surrounding
reality, language, progress and notions of the individual subject. These frameworks offer a
critical constructionist perspective of what is currently considered "deviant" in our society,
relating deviance to the socio-political and economic conditions of society at any specific
moment in time. Each framework will be introduced separately so that theoretical concepts can
be discussed in detail. This will be followed by a synthesis of the literature in order to pull out
commonalities among the readings. Synthesizing theory from the above authors will offer an
alternative, critical, postmodern perspective associated with notions of deviancy, otherness and


Postulated Linguistics

"Language is not life; it gives life order" (p. 76)

Deleuze and Guattari (1987) challenge modernist interpretations of language. These
constructions view language as a form of communication, language as a way to transmit
knowledge, and language as a medium for relaying one's internal thoughts, motivations and

The authors argue the primary purpose of language is not to communicate information
but rather to impose a pre-established order based on redundancy. Describing language as a
series of order words, they contend language is not a specific set of explicit, descriptive
statements about a phenomenon, since every act is linked to a statement by social obligation,
carrying with it a set of implicit presuppositions which bring about a highly specific outcome.
Referring to the confining nature of language as a "death sentence", the authors argue
that within each order word lies a death sentence, limiting the range of possibilities for thinking,
interpreting and acting in the world. Put another way, order becomes imbedded in the rules of
language, informing us about how language can and should be used, establishing rules to
determine when language makes sense and when language does not. As language presupposes
how and what we must think and what we must retain as valuable information, the relation
between the statement and the act, although immanent and internal, is not part of the person's
identity, but rather is one built on the constant redundancy between the statement and the act.
If language is constructed as a pre-established system (based on redundancy) then the
authors argue that we cannot assign a non-linguistic point of departure because language does
not proceed from what has been seen or felt to something that has been said, but rather goes from
saying to saying. Words stand as representations of external events or internal processes, yet they


do not and can not represent the totality of that experience. Considering words are
representations of the act, performance, feeling, etc., words are unable to adequately capture the
entirety of the experience, leaving something nonlinguistic or unintelligible to remain in excess.
Deleuze and Guattari (1987) illustrate the limitations of language when they state: "There are
many passions in a passion, all manner of voices in a voice, murmurings, speaking in tongue:
that is why all discourse is indirect, and the translative movement proper to language is that of
indirect discourse" (p. 77). They argue language is not the transmission of information and it
does not "go from a first party to a second party, from one who has seen to one who has not, but
necessarily goes from second party to a third party, neither of whom has seen" (p. 77).

Deleuze and Guattari (1987) distinguish between actions and passions affecting the body
and acts which are incorporeal attributes or the "expressed" of a statement. Incorporeal
transformations occur instantaneously through the expression of a sentence. The statement "your
child has a diagnosis of autism" concerns an incorporeal (not actual) transformation of bodies.
The expression of the statement immediately and simultaneously is indicative of transformation
and the effect the transformation produces. The statement carries with it a variety of
assumptions, limiting the range of possible acts. The authors argue language is nothing without
the pragmatics that put constraints on certain possibilities.

To elaborate further, in order to distinguish between corporeal and incorporeal
transformations, Deleuze and Guattari (1987) discuss two formalizations, one of content and the
other of expression. Being heterogeneous in nature, content and expression have their own form,
as expression can never be seen as a sole function of representing, describing or understanding
content. As language functions as indirect discourse, assemblages of enunciation do not speak of
things, but rather speak on the same level as states of things and states of content. A continual


passage from content and expression occurs and it is this reciprocity that leads one to always
form a relay with a segment of the other, continually passing from order words to the silent order
of things and vice versa. Forms of content and forms of expression are inseparable from
deterritorialization (i.e., deconstruction) that carries these concepts away and conversely these
forms can be reterritorialized (i.e., reconstruction) through stabilization as contents and
expression feed and merge into one another. Expression therefore does not accurately reflect
content, but rather forms of expression and forms of content communicate through amalgamation
relative to deterritorialization, both intervening and operating in the other.
Language as Possibility?

To summarize, Deleuze and Guattari (1987) construct language as a series of order words
that carry with them a death sentence, limiting the range of possibilities between the statement
and the act. Forms of expression do not adequately reflect forms of content and these two forms
operate independently but continually feed into one another, in a continuous process of
territorialization and deterritorialization, thus leading Deleuze and Guattari' s (1987)
conceptualization of language to seem quite bleak; from this standpoint language is merely the
repetition of certain stereotypes and codes of conduct that contribute to the overarching order of
things. However, Deleuze and Guattari (1987) do offer a theoretical linguistic escape from
merely perpetuating the status quo.

Language is a heterogeneous system that can be viewed as a variable reality, yet in order
for the scientific study of linguistics to exist, language is portrayed as a homogenized, centralized
and standardized structure. This constructed foundational structure of language, that is
insidiously political, becomes the language of power; in other words, it becomes a dominant or
major language. Being defined by the power of consistency, the majoritarian language offers


stability. Yet, there is also the power of variation found in what can be called minoritarian
languages, and it is these languages that construct a continuum of diversity, urging all concepts
to be seen from a narrower or broader perspective. It is these minority languages that "make the
dominant language stammer" (p. 104), as they reject common points of reference and are in
favour of difference.

Major language does not stand in opposition to minor languages, but rather these two
languages serve as two functions of language. The problem is not deciding what language
systems should be classified as major or minor languages but rather the problem is one of
becoming. It is a matter of deterritorializing the major language. Minor languages only exist in
relation to the major language from the standardized model. Even though order words carry with
them a death sentence they also carry within them a warning cry or a message to flee. Order
words can mark stoppages. What Deleuze and Guattari (1987) want us to realize is that the
majority language is an "abstract standard," a postulated idealistic reflection of what language
should be and therefore it is reflective of nobody. Whereas the minority language is the
becoming of everyone, becoming to the extent it deviates from organized, homogenous
compositions. It is in the process of "becoming" Deleuze and Guattari (1987) argue, in which
these orders can be extracted into rites of passage.

Fifth Interlude

Throughout this piece I have continually described myself as passive and compliant in nature.
Based on the constant redundancy between the statement and the act (e.g., I am docile, I behave
in docile ways), I have internalized these qualities to be an inherent part of my genetic make-up.
Yet, what contradicts the static idea of "the self I have come to describe as Sarah, is that one
year ago I decided to abandon everything I have come to know as true, to diverge into illegal
territory. Since this decision, one question continues to linger in my mind; in the midst of my
graduate career why did I decide to alter my academic trajectory, ultimately leading me to
explore alternative epistemological frameworks, and change thesis topics and advisors?


Previously, the scientific method was my majoritarian language. I found comfort in existing
dichotomies of right/wrong, normal/abnormal, real/false, objective/subjective, and
logical/illogical. Through empiricism and scientific investigation, I operated under the
assumption that I could process information in terms of these dichotomies, incrementally adding
onto the existing knowledge of the professional community. I found comfort in the idea of
empirically, sound and generalizable conclusions about the totality of the human condition.

At the time, social theory seemed utterly useless to me. 1 failed to see the connection between
arguments surrounding the socially constructed nature of human experience and what exists in
reality. These theories seemed too vague and abstract to have any sort of practical usefulness.
Yet, something during the first year of my graduate work altered my perceptions about the
practicality of social theory.

The multidisciplinary nature of the Child and Youth Studies program allowed me to investigate a
variety of phenomena from different perspectives. I challenged myself to think about the
practical usefidness of social and critical theory and how it relates to our everyday experiences.
This ultimately led me to examine my own experiences through a critical social constructionist
lens, thus leading, in the words ofDeleuze and Guattari, "the dominant language to stammer".

In a world surrounded by pathology, I live in constant fear of a diagnosis. Being diagnosed with
anorexia when I was 11,1 was told by the experts that I would never "recover "from my eating
disorder, as eating would continue to be a life-long struggle for me, entering a continuous cycle
of starving myself, eating, hinging and purging and then returning to "normal" eating patterns.

Under the gaze of the medical model, a variety of reasons were hypothesized for my eating
disorder, including biology, genetics, family conflict, sexual abuse, the media, poor peer
relations, peer teasing, etc. This ultimately led professionals to conclude that 1 was born with a
genetic predisposition to anorexia; and during a period of elevated stress in my environment, the
eating disorder emerged due to my inability to effectively cope with specific life circumstances.

To this day, I do not believe the above psychological bullshit.

Chapter 6: Franco Basaglia and the Anti-psychiatry Movement in Italy
Overarching theoretical framework

In 1961 Franco Basaglia, a young Italian psychiatrist and a scholar of phenomenology
left the University of Padua to direct a small provincial psychiatric hospital: the asylum of
Gorizia. Horrified by the inhumane conditions of the asylum, and guided by Marx and the
Gramscian perspective, Basaglia re-theorized mental illness through a socio-historical and


political lens, taking the side of the patient as a person who suffers and is oppressed. Basaglia's
destruction of the Gorizia institution and dialogical struggle with "the other" served as a
benchmark for the beginning of the anti-psychiatry, anti-institutional movement in Italy (Scheper
Hughes & Lovells, 1987).
Institutional Violence

In Italy, institutional conditions for the insane closely resembled those found in the
prison. With an over-emphasis on dangerousness — based on the premise of "what they might do"
or "what could happen" — the insane were deprived of their most basic human rights. Basaglia
(1987) argued it was the technologies of control (e.g., restraints, straight jackets, wire mesh
fencing, grating, bars, gates and keys) found in the asylum that transformed patients into
"things". Techniques such as these were designed as a means of mastering madness — as they
were done to the individual and not with the individual. Schizophrenics, manic-depressives, and
hysterics were thereby portrayed as objects to be acted upon; being unable to express and
experience themselves they remained inactive and submissive: "sitting and waiting for someone
to seize upon them, and make them live as they see fit" (p. 78). Basaglia (1987) further states,
"the moment I say, this person is schizophrenic I will begin to behave toward her in a unique
way, that is, knowing full well that schizophrenia implies an illness for which nothing can be
done" ( p.8). Here, Basaglia (1987) clearly illustrates how communication between doctor and
patient in the asylum becomes objectified as all communication is filtered through the label of
madness. Any opposition to the rules of the institution is therefore interpreted as a symptom of
the illness, serving to confirm these existing distinctions. By operating under the "doctor knows
best" assumption, the patient's experiences of his/her own condition is deemed secondary or
illegitimate to medical professionals. This provided justification for the legalization of violence.


Sixth Interlude

The Herzogfilm, based on the life of a man named Kaspar Hauser who was locked in a cellar for
the first 17 years of his life, is an excellent illustration ofBasaglia 's legalization of violence.
Following the first 17 years of confinement, Kaspar was "set free " and left in Nuremberg to live
a life of liberty, freedom and justice. As Kaspar was without language, communication, gross or
fine motor skills, he was placed yet again in a cellar of confinement out of the townspeople 'sfear
of "what Kaspar might do ".

Everything Kaspar does and says is explained in terms of his oddities. Failing to consider the
world from an alternate view, the townspeople force Kaspar to assimilate the thoughts, beliefs
and expectations of the town. Interestingly, however, the more Kaspar appears to progress
(according to the townspeople 's standards, e.g., learn language, societal expectations and gain
knowledge, etc.) the more Kaspar appears to inhabit state of desolation and despair.

"They [the townspeople] are like wolves to me "; "The only place I like is my bed".

Kaspar 's desire to be left alone is seen as a symptom as the townspeople continue to act in a
benevolent effort to save Kaspar of his idiocy.

Having worked with children with PDD firsthand, I myself have wanted to help these children
learn language and communication skills, self help skills, to learn emotion recognition and the
ability to take another's perspective, and to decrease aggressive and problem behaviour, with
the hope that these children would be able to successfully integrate into society.

These benevolent actions were not driven as a result of the capitalistic desire for these
individuals to become productive citizens in order to contribute to the overall economy, nor were
these actions based on pure monetary value for myself. Rather these actions were premised on
my continual fear that these children would be unable to function independently, would be
excluded from the rest of society, and would be unable to form long lasting intimate relationships
with others.

Others aren 't very accepting of difference. Others gawk and stare when a child excessively hand
flaps because they are over stimulated. Since I, myself would hate to be gawked and stared at,
excluded by mainstream society and unable to form long-lasting relationships with others, my
actions coincide with what I would want if I was autistic.

But I am not autistic and so I will never fully know if people with autism actually want to adopt
the dominant language and communication patterns of dominant society, or maintain adequate
social relationships or be included as active participants in mainstream society. Similar to the


townspeople of Nuremberg, I act out of what I can infer from myself and my own personal fears
and desires.

Basaglia 's Socio-Historical and Political Analysis

Basaglia saw the institution as a microsocial architectural space that was counter-
therapeutic and iatrogenic, establishing an illness specific in its procedures and techniques. This
was not to say Basaglia believed mental illness did not exist, but rather he wanted to clearly
delineate how scientific concepts used to define mental illness were so abstract that they did not
accurately reflect what existed in reality. Under the guise of disease, characteristics of madness
(e.g., passivity, aloofness, irrationality, delusional speech) were seen as an irreversible cause of
illness. This confirmed the need to separate and exclude the insane from the rest of society.
Basaglia believed we could not know the reality of mental illness until societal structures and
social influences such as poverty, social stigma, segregation and confinement were stripped away

(P- 8).

Basaglia 's Economic Analysis of Mental Illness

Many professionals working in the asylum throughout the 1970's could not deny the fact
that many of the patients placed in these institutions were from marginalized and lower social
classes. Basaglia and his colleagues went further in their class analysis, as they recognized
psychiatric diagnosis was related to the prevailing economic order. This was guided by a moral
economy which defined normality and abnormality in its own rigid class-based terms which, in
turn, perpetuated the status quo.

To further elaborate, Basaglia (1987) uses the terms primary and secondary deviance to
explain the political tools used to control deviant behaviour. Primary deviance refers to deviance
as a result of marginalization through the sole exclusion of a group from mainstream social,


political and economic institutions. Basaglia (1987) contends, however, that primary deviance is
often masked by secondary deviance, which encompasses ideologies that view deviance through
a medical model lens. Being framed as a disease rather than a result of marginalization and social
exclusion, abnormality is treated the same way as other medical conditions: the professional
provides recommendations for how to alleviate symptoms. What Basaglia (1987) points out is
that deviance is managed by colliding primary deviance into secondary deviance, so that
attention is diverted from the former and the latter becomes the focus of attention. In other
words, the social context in which these individuals are marginalized, segregated and excluded
from active democratic participation in society is largely ignored. Instead, the focus is placed on
mental illness as a disease that resides in the individual that is in need of intervention. What is
less obvious are the techniques developed in a humanitarian and benevolent effort to help the
insane are also the same procedures used to exclude — placing these individuals even more on the
margins than they were initially.
The Political Underpinnings of Ideologies of Deviance

The ideology of deviance is linked to the medical perspective, in which behaviours and
emotions deviating from the norm are considered natural and unchanging and are directed
towards specific personality typologies. Basaglia (1987) argued the medical ideology of mental
illness has little to do with medicine and more to do with production and economic growth.
Deviance, in late stage capitalism, occurs when individuals do not actively participate in the
productive rhythms of society. He points out that typically people labeled with a mental illness
have either lost or never had contractual power with those in charge of production.

What Basaglia (1987) indicates in his analysis of the institution is that placing these
unproductive individuals within institutional walls creates a new type of productivity and


efficiency, thereby affording these individuals an entirely new social role. This new social role is

directly linked to science, as for every level of economic development there is an appropriate

scientific language that arises, concealing existing contradictions and shaping illness according

to the direct needs of society. This brings us to Basaglia's analysis of mental illness as a human


Illness as a Human Contradiction

Basaglia (1987) argues mental illness itself is a human contradiction that occurs in every
society. Definitions used to describe deviancy, psychopathology and abnormality are constructed
to resolve these contradictions, as these abstract concepts are reduced to commonalities, labels
and value judgments that serve to perpetuate these differences. The gradual manufacturing of a
norm is based on the requirements of bourgeois rationality, resulting in a subdivision of different
clinical pictures, nuances of differences, and the defining qualities of types of insanities. By
engaging in this process society is freed from existing inconsistencies in human development and
the concept of "the norm" is confirmed and validated.

Every society shapes illness according to the direct needs and aspects of the functioning
society, which will, in turn, determine the future development of that disease. Basaglia (1987)
argues psychiatry refuses to see the strong association between, on the one hand, the ideological
construction of a norm, governing the techniques and practices used; and on the other hand, the
social organization that begins to structure divisions of labour and various disciplines in such a
way that the individual must adhere to that norm. Many other authors have articulated a similar
concern. Philp (1985) sums up this anxiety with psychiatry quite nicely when he states:

The normal child, the healthy body, the stable mind . . . such concepts haunt our ideas
about ourselves, and are reproduced and legitimated through the practices of teachers,


social workers, doctors, judges, policemen and administrators. The human sciences
attempt to define normality; and by establishing this normality as a rule oflife for us all,
they simultaneously manufacture it — for investigation, surveillance and treatment — the
vast area of our deviation from this standard, (p. 67)
The Dialogical Nature ofBasaglia 's work: A Shift toward Liberation Psychology

Basaglia's (1987) collection of readings illustrates controversies surrounding traditional
psychology and the limitations of using existing dichotomies (i.e., sane-insane, normal-
abnormal, and rational-irrational) as real universal concepts about the world. However, he points
out that once we call into question these existing dichotomies, we run the risk of falling into the
same impasse. For example, simply altering our constructions of the asylum from an
authoritarian coercive structure of control to a benevolent humanitarian organization, would
alleviate our guilt towards the patient, but would confuse the issue. Basaglia argues for "a
psychiatry that constantly checks itself against a reality and finds in that reality elements by
which it can challenge itself (p. 75).

Currently psychiatry aims to resolve the inconsistencies of the human condition through
modernized techniques that are perfectly logical and empirically based. Yet, these existing
conceptualizations perpetuate a relationship between objects where reciprocity is systematically
withheld. The dialogical nature of Basaglia's (1987) work as a process of contradiction allows us
to see the problematic nature of defining reality a priori. The moment we define it, it vanishes
and becomes an abstract concept that is no longer representative of its existence. By attempting
to freeze reality it becomes distorted and irrelevant. Instead of attempting to ignore existing
contradictions, Basaglia (1987) argues for the need to dialogically confront inconsistencies, as it


kicking and screaming into our social environment by displaying "normal" behaviour, is to
deprive these individuals of their differ ent-ness. Baggs (2007) clearly articulates this concern:
"only when the many shapes ofpersonhood are recognized will human rights be possible. "

Many of us fail to see our own invested interest in the modification of "the others "
(i.e., our children, significant others, clients, students, etc). Typically we label "the other's"
behaviour deviant when it interferes with our (society's) daily functioning. And we cannot forget
that when we are successful at modifying the other 's behaviours we are also reinforced!

Training a child to wave "hello " gives the child a gesture that can be used to initiate a social
interaction: yet we cannot forget the reinforcing social implications it has for others within the
child's environment. The child waving hello also enables the adult to feel loved, respected and
valued by the child.

It indeed becomes quite difficult to separate the need to "help " children with autism successfully
function in society and our own invested interest in modifying certain behaviours the child

Chapter 7: Foucauldian Analysis of Madness and Power
"A history of madness does not exist without a history of reason" (Sheper-Hughes & Lovell,
1987, p. 231)
Brief Synopsis of Madness and Civilization

In the book Madness and Civilization Foucault (1965) delineates the path leading reason
and madness to be constituted as binary opposites that appear to be "deaf to exchange, and as
though dead to one another" (p. ix). Foucault (1965) attempts to give madness back its voice by
illustrating how accounts of madness throughout the centuries are not accurate portrayals of
madness, but are ultimately the result of a monologue of reason about madness through the
gradual evolution of dominant values, rules, beliefs and systems of power.
Morality Justification for Confinement

Prior to the Classical period, madness was seen as an undifferentiated experience; a lower
limit of human truth that was not accidental but essential to all aspects of human life. Yet, a shift
occurred during the Enlightenment era when madness began to operate as a discrete phenomenon




independent of what was considered rationale. Foucault traces the evolution of madness as a
separate entity that occurred as a result of three simultaneous events taking place in European
society during the time. First, the feudal economy had given way to early market capitalism,
increasing the discrepancies between rich and poor. Coinciding with the change to market capital
the notion of protestant work ethic evolved. Hard work was now viewed as a moral duty and the
path to salvation was equated with capitalistic gains. Third, the rise of medicine as an objective
science allowed psychology to emerge as a practice of moral correction (Danforth, 2000). As a
result, institutions such as the Hospital General (1656) were developed, not only as medical
establishments, but to maintain the monarchial and bourgeois order being organized in France
during the time (Foucault, 1965). These places of confinement provided a new home for
madness, fostering a new sensibility to poverty, new reactions to economic problems such as
unemployment and idleness, and a new ethics of work where moral obligations were linked to
the law by authoritarian forms of constraint. Madness existed only on the other side of the bars,
under the gaze of reason that no longer felt any relation to it or dared compromise itself by too
close of a resemblance. It was during this period that madness became a "thing" entirely
enclosed in pathology.

In the Classical period, the sole function of confinement was to prevent mendicancy and
idleness as it was the underlying source of all disorders. For Foucault, the relation between
confinement and the insistence on work was not defined by the economic conditions in Paris, but
rather was guided by a moral perception that sustained and animated it. Origins of poverty were
not a result of a scarcity of commodities or underemployment but rather society attributed these
occurrences to the weakening of societal discipline and the relaxation of morals. Therefore,
confinement had an ethical tone attached to it, being seen as a moral institution responsible for


punishing and correcting certain moral abeyances. Foucault argues the reduction of madness to
"a lack of morality" secretly served as a nucleus for all concepts of madness in the 19 th century
providing justification for science, positivism and experimental procedures.
Liberation of Madness?

Traditional historical trajectories of the insane identify individuals such as Phillip Pinel
and Samuel Tuke as contemporaries involved in the positive paradigmatic shift of perceptions of
the insane. As the insane were released from their chains and more humanitarian efforts to
"cure" these individuals were developed and implemented. Pinel and Tuke firmly believed
madness was a chronic condition only because these individuals were deprived of air and liberty
necessary to be cured.

In Madness and Civilization Foucault (1965) speaks of a man entering Tuke's Retreat
who not only exhibited symptoms of mania but his seizures caused great panic to those around
him. Entering the Retreat in shackles and chains, the madman's restraints were removed and he
was permitted to dine with the keepers. The madman was told that as long as he did not disobey
the rules of the house or the general principles of human morality, he would be free of his
previous condition of confinement. At the end of four months the man left the retreat cured. This
is one of the many cases in which moral treatment was used to help the madman control and
monitor his behaviour. In this context explicit systems of control were no longer needed to
manage the madman's behaviour, as he began to restrain himself, taking responsibility for his
own actions and the consequences of those actions.

What Foucault (1965) illustrates through this example is that even though explicit
instruments of control (i.e., constraints, isolation, torture etc.) were eliminated, the madman was
only treated with dignity and care when reasonable and socially desirable behaviours were


exhibited. Any manifestation of irrational, abnormal or disturbing behaviour was linked to
punishment or the threat of returning back to the ball and chain. It was this principle of fear
(through speech) that became the new instrument of control and power in the management of
behaviours of the insane.

Falling entirely in the hands of pedagogy of good sense, of truth and of morality, fear was
implanted not in its instruments of curing the sick but in speech (i.e., discourse). From the
acknowledgement of himself as object, and from the awareness of this guilt, the madman
returned to his awareness of himself as a free, responsible, subject and consequently to reason,
thereby objectifying himself to the gaze of the other. Everything became organized so the
madman would imagine himself in a world of judgment that enveloped him on all sides, through
the sharp awareness that his behaviours are constantly being watched, judged and condemned
Foucault, 1965).

What Foucault (1965) points out is that even though efforts to help the insane appear to
be progressive, becoming less cruel, torturous, invasive and more humane the function of these
new moral and religious technologies remains the same: fear no longer reigned on the other side
of the prison gates, but remained under the seals of consciousness. The madman as a human
being was no longer guilty of being mad and as a consequence was held morally responsible for
everything within him that disturbed his judgment and society. As a result, the madman could
not hold anyone but himself responsible for the punishment he received.

Philip Pinel and Samuel Tuke not only opened the asylum to medical knowledge, but
Foucault would argue they initiated a personality whose power was borrowed from science in
order to justify certain practices and disguise their primary intentions. Power became that of


moral and social order taking advantage of the madman's minority status to inculcate prevailing
norms, values and behaviours of the dominant society.

Eighth Interlude

Nothing about the etiology of my eating disorder made sense, until I encountered an article by
Lock et al., (2005) illustrating how the writings ofFoucault were incorporated into the practices
of narrative therapy. The article described Foucaull 's analysis of power as being embedded in
discourse and the practices and techniques of the social sciences, ultimately leading to
panopticism .

"As an inmate of the Panopticon, a self-policing subject, self-committed to relentless self-
surveillance. This self-surveillance is a form of obedience to patriarchy. It is also the reflection
in woman 's consciousness of the fact that she is under surveillance in ways that he is not, that
whatever else she may become, she is importantly a body designed to please or to excite. "
(Bartky, 1998 as cited in Bell, 2006, p. 291-292)

This description spoke to me.

I am hyper-sensitive of my obligations as female. I must be beautiful, thin, smart, witty, polite,
and docile. I am an excellent self-monitor. I have great self-control, disciplining myself when I
do not meet the unattainable expectations I set out for myself.

Average is unsatisfactory. I strive to exceed, moving beyond the grasp of the other. In a way I
continue to feel trapped in a cycle of normality; the standards of what is beautiful, intelligent,
appropriate, are constantly influx, leading me to always slightly fall short of victory.

Throughout Catharine Maurice 's (1992) book she refers to normality as something corporeal. In
a discussion of her daughter 's experience with behaviour modification, which she previously
describes as intrusive and mechanical, Maurice states that these perceptions of behaviour
modification were initially clouded by her emotionality and in reality behaviour therapy was
freeing her daughter into normalcy. Specifically she states: "we were not imprisoning her, we
were freeing her into normalcy" (p. 131).

The first time I read this statement 1 didn 't give it much critical thought or reflection. As autism
is commonly constructed as "the child being imprisoned in a world of his/her own " the
statement seemed self-explanatory; as adaptive skills, communication and language increase, the

12 Panopticism: An architectural design developed by Jeremy Bentham which illustrates power in its most ideal
form; inducing a state of conscious, permanent, visibility to ensure the automatic functioning of power. In this
instance control, surveillance and discipline transfer from the public to the private realm, as the subject begins to
monitor his/her own behaviour, disciplining him or her self accordingly (refer to p. 67-68 for more details).


child becomes more aware of his/her social world and is better able to function independently
within it. Re-examining this statement after reading Foucaidt, I no longer see this statement as
self-explanatory but rather contradictory.

Foucaidt argues sovereign power (i.e., power over) has been replaced by disciplinary power,
which is embedded in our everyday techniques and practices surrounding what is considered
acceptable and normative. As these normalizing judgments are internalized, the subject learns,
in fact, to monitor and discipline him/herself Foucaidt argues this does not "free the subject" to
become a master of his/her own fate, but rather creates docile bodies as the person 's behaviour
resides under the complete control of systems of power, leading the person to become passive,
obedient and compliant.

Training someone to "act normal " limits their capacity to behave in innovative and creative
ways. Being constrained by discourses surrounding "what is normal" and "what is acceptable" ,
places constraints on our interpretations of another s behaviours. This is not only true in my
personal experience of being confined by the representations of what is considered "the ideal
female " but is also evident in Herzog 'sfilm.

Kaspar's authentic understanding of the world was limited by societal constraints. In an
intellectual exercise based on logic, Kaspar was given the following scenario: you are standing
at a crossroads, where one path will lead you to the village of truth (where people living in the
village can only speak the truth) and the other path will lead you to the village of lies (where
people living in the village only speak lies). What is the one question you could ask a person
walking along one path if you wished to determine whether he is coming from the village of truth
or the village of lies?

Kaspar replies: I would ask him if he 's a tree frog!

Although Kaspar's answer was correct, in thai the question would determine whether the person
was from the village of truth or the village of lies, it was viewed by the intellectual as wrong,
illogical and based on description rather than deduction and logic. Placing logic and deduction
on a hierarchy above description, innovation and creativity, limits our capacity to behave in
novel ways.

Exploring Notions of Power

In many of Foucault's writing (such as Madness and Civilization) he refers to notions of
power. Yet, it is important to realize that when Foucault speaks of power he is not referring to
modernist notions of power as a distinct entity that some people have and others do not.
Therefore, it is important to explore Foucault's conceptualization of what he means when he uses
the term power. This will not only enhance our understanding of many of Foucault's writings,


but will also illustrate why Foucault urges us to investigate dominant techniques and practices
within a given society.
Foucault 's Analysis of Power

For Foucault (1980) power cannot not been seen as a commodity that some individuals
hold and others do not, as power is neither given, nor exchanged or recovered but rather is
exercised, its existence only occurring in action. Power is not a repressive force but rather is
productive in that it produces knowledge instigating certain forms of subjugation.

In an attempt to understand the "how" of power, Foucault suggests its mechanisms can be
related to two points of reference: 1) Rules of right, providing a formal demarcation of power;
and 2) notions of truth that power produces and transmits, that in turn, perpetuate power (p. 93).
Hence, Foucault suggests we have a triangle encompassing power, rules of right and truth which
are organized in a highly specific fashion. He posits rules of right are implicated in relations of
power through the production of truth discourses. When Foucault speaks of rules of right he is
not referring to right in the juridical sense that derived from the rules of sovereignty, but rather in
the sense of a natural rule or norm, where disciplinary power is embedded in discourses and
techniques, thus carrying the element of domination inherent in its practice.

Foucault contends that within a given society there exist relations of power which
permeate and construct the social body. These relations of power cannot exist without the
functioning of a discourse. These discourses of Truth, however, only permit certain types of
power. Power thus occurs in a circular motion — as we are forced to produce the truth of power
our society demands in order to function efficiently. As we are continually on a quest to find or
speak the Truth, power never ceases its relation to the truth as it institutionalizes,
professionalizes and rewards this pursuit. It is Truth that makes the laws in which "we are


judged, condemned, classified, and determined in our undertaking, destined to a certain mode of
living or dying" (p. 94). And it is these Truths that are bearers of specific outcomes of power.

In summation, Foucault argues rules of right (surrounding societal norms, including the
right to treatment, to education, or the right to live in an inclusive environment) are inculcated
through the production of Truth discourses (grounded in empiricism) which seek to maintain
rather than eradicate existing hierarchical power structures.
Importance of Investigating Techniques

Foucault contends the nature of power needs to be investigated, not by focusing one's
attention on the conscious domination and material operations of power, but rather by identifying
forms of subjugation through the investigation of techniques and tactics; that is, cases in which
domination is achieved but the intent to dominate is implicit. Referring to this type of power as
disciplinary power, Foucault argues that such power is exercised through the knowledge,
techniques and discourses of the human sciences, all of which create and enforce the norms of
human behaviours of modern society.
Chapter 8: Investigation of Autism Practices using the Theoretical Framework of Deleuze and

Guattari, Foucault and Basaglia
The modern theory of truth can be viewed as the split between appearance and reality
(Danforth, 2000). Modernism assumes that even though we may believe certain truths about the
world, they are in fact subject to scrutiny, being loaded with ingredients that make truth finding
nearly impossible. These ingredients include immeasurable and subjective characteristics such as
emotions, unconscious motivations, ideologies, passions and impulses. According to modernism,
True reality can only be uncovered if one takes the scientific steps needed to move beyond
"appearances" in order to uncover the True nature of human experience free of human error and


bias. Rationalism, which later translated into positivism, attempts to make sense out of what one
does not understand and involves techniques such as defining, classifying and categorizing.
Mimicking the models of the natural sciences the above authors would argue that these
techniques justify certain practices but disguise their primary intentions.

Basaglia (1987) contends that madness is embedded in the discourse of illness which is
guided by the language of the rational. This illness discourse of madness provides justification
for the techniques and practices used by the rational professional, since it is thought the patient's
reality is clouded by their irrational and incoherent speech, their irregular behavioural patterns
and/or their impulsive persona. However, neither Foucault nor Basaglia are persuaded by the
scientific model of human behaviour as they are not interested in modernism's quest to find
truth. Their work offers a critical socio-cultural and political perspective, attempting to make
transparent the political dynamics and consequences of privileging the truths of scientists and
professionals over and above those of subordinate statuses (i.e., those labeled mad). The
language of science, professionalism and medicine reduces madness to a set of describable and
analyzable objects to be trained, corrected, normalized and excluded, as it is the professional's
job to move beyond false appearances to get to reality. In this instance, the madman's current
history and experiences with the disorder are rendered mute and it is the professional's objective
stance and knowledge (grounded in contemporary Truths) that will help or cure the individual of
his/her deviance. This rational discourse provides justification for what Basaglia (1987) refers to
as the "legalization of violence".

Foucault and Basaglia argue the voice of madness has been silenced by the scientific
discourse of rationalism and the gradual manufacturing of professional industries developed in a
benevolent effort to serve these individuals. Again, considering Foucault' s arguments


surrounding aspects of power which are invested in the dominant techniques and practices of
society the following question arises: Do the techniques and supports used to "help" these
individuals reflect there perceived intentions?

The Political Construction of the Other as Defective
Both Foucault and Basaglia establish a link between those defined as other and the socio-
political conditions of the time. Foucault establishes a historical link between the emergence of
madness in Europe and the abolishment of leprosy at the end of the middle ages. His genealogy
of madness suggested the disappearance of leprosy was not a result of improved medical
practices but rather was an outcome of segregation, as the lepers were shipped away on boats to
sail the unbounded ocean. What remained longer than leprosy, however, were the lazar houses
which maintained the image and values attached to exclusion of the sick and society's fears of
contamination. Foucault contends these remaining formulas of exclusion were repeated two and
three centuries later, when the poor beggars, criminals and delusional minds would take the place
of the leper, being excluded from society based on fear of contamination and violence.

With the birth of the industrial era, attitudes towards madness emerged in terms of
economic ideas, attitudes towards labor and the current ideologies of the city, creating a new
form of discrimination. The exclusion of groups from society was based on the sole premise of
production and it was the individuals interfering with the productive rhythms of society who
were constructed as sick, defective, deficient and deviant. Yet, rather than seeing madness as an
effect of social factors, it was depicted as a characteristic of the person's inherent personality,
thereby perpetuating the defective ontology. Similarly, Basaglia's (1987) analysis also alludes to
the idea that patients residing in the asylum in Italy in the 1970's were from lower social class
backgrounds. Paralleling Foucault, he argues marginalization is often masked by ideological


reformations that label deviance as a mental health issue. The social conditions in which these
labeled individuals are segregated and excluded from active democratic participation are often
masked by the medical model perspective which labels these individuals as "abnormal" and in
need of treatment.

Both authors argue society shapes illness according to the needs of society, which
determines the future of the disease. Basaglia (1987) contends psychiatry refuses to see the
strong association between the ideological construction of a norm which governs the techniques
and practices used, and the social organization that begins to structure divisions of labour and
various disciplines in such a way that the individual must adhere to that norm. Foucault's
historical account illustrates how confinement of the unproductive actually established a new
economic function. First, institutions began to no longer confine people out of work, but to
assign work to the confined, in order for these individuals to contribute to the prosperity of all 13 .
Second, the morality discourse in the Classical age led to the use of rigorous forms of constraint
(both explicit and implicit) permitting morality to be administered like a trade or economy.
How does this relate to Autism Discourse?

PDD and the window of opportunity hypothesis. Concepts such as autism, deviancy,
abnormality, pathology and disorder carry with them a set of pre-established signifiers or what
Deleuze and Guattari would call "order words". These order words carry with them a "death
sentence" or judgment which influences how we come to understand a given phenomenon. Even
though these concepts are open to mutation, definitional change closely parallels the demands of
the dominant society — for example, how we have come to think about what it means to have the
diagnosis of autism has changed over time. Previously, autism was considered a "lifelong

13 Basaglia incorporated this idea as a main element in the destruction of the asylum. Individuals in the asylum were
given jobs (i.e., working in the kitchen, gardening, cleaning etc) with fair wages for employed hospital patients that
came to resemble the social reality of labor in Italy during that time.


developmental disorder" and carried with it ontological assumptions about the stability of the
condition and the bleak future awaiting diagnosed individuals. Currently, dominant autism
diagnosis is structured within a late stage capitalist framework as the "window of opportunity
hypothesis" carries with it ideas about normalcy, the need for early intervention and ideological
constructions surrounding childhood as a period of investment (Jacobson, Mulick & Green,
1998). The belief follows, that if we invest in intensive treatment early, children with autism will
likely require less governmental supports and services in the future. Autism services are now
portrayed through the profit and yield nexus, being seen as an investment to be made early that
will be of extreme monetary savings in the future (Jacobson et al., 1998).

PDD and productivity. Basaglia's (1987) work led to the destruction of asylum and the
reintegration of the mentally ill into society. Yet remnants of asylum are still evident through
institutions, such as psychiatric wards in hospitals, out-patient care, and specialized schooling to
name a few. Technologies used to remediate autism or help alleviate autism symptoms create a
new type of productivity and efficiency. In our current society, psychologists and other licensed
professionals have become social technicians deemed capable of classifying, categorizing and
providing services to children with disabilities (including children with autism). Pathology is
seen as something real that can be quantified, as it is aetermined by a person meeting a specific
number of objective behaviour criteria (APA, 2000). The assumption follows that within the
pathological category lies a variety of deviations. These identifiable differences in how
individuals deviate from the norm, in turn, affect the services they receive. Entire professional
industries then evolve as a means to provide specialized services to groups classified with
different diagnoses, yet many individuals operating within the same diagnostic label are treated
as one homogenous group.


To make this example even clearer, children identified on the autism spectrum can be
labeled with Autistic Disorder, Aspergers, Pervasive Developmental Disorder-NOS, Retts
Disorder, or Childhood Disintegrative Disorder. These labels are used to construct professional
views, values and interpretations of particular groups of children. Information is then processed
based on what deviations among these groups of children are similar. The distinction made
between children with Autism and those with Retts Disorder has direct benefits for professionals,
as they will base their entire professional practice around these constructions. In this instance,
these labels serve as a social reality for the professional, as these constructions are used to guide
knowledge, expertise and influence treatment decisions. Yet, for the client, these labels are of
limited value and, more insidiously, may position the person as lesser, defective, deficient and
lacking the moral and human character of the professionals doing the defining (Foucault, 1975).

This is a clear example of how primary deviance (i.e., deviation as a result of
marginalization, social exclusion, segregation) is masked through the ideological development of
secondary deviations (i.e., these people have a diagnosis of autism and need to be treated). In
addition, individuals deemed unproductive are given a novel social role as capitalism begins to
see these individuals as both consumers and commodities — seeking out vulnerable individuals
and selling them the path to normality.

Through the political construction of ''the other," specialized services particular to the
individual enable entire professional industries to be created by targeting one group of
individuals. Individuals labeled deviant, and their families, will seek out and invest in services
with the long term outcomes in mind. These industries positively contribute to the overall
economy by establishing entirely new professional fields. In turn, labeled individuals acquire a


new productive function in their society, being both consumers of the services and a product of
the techniques utilized.

Science and Power: Producing Docility
In Discipline and Punish Foucault (1975) describes the panopticon (introduced in
Interlude 8, p. 58): a type of prison building designed by Jeremy Bentham in 1871 to provide
maximum surveillance and control within prison walls. The circular shape of the structure,
locating security in the center, increased efficacy as it allowed the guards to view various rows of
prison cells simultaneously. This "all seeing"' space increased guard visibility enabling one guard
to view a larger proportion of criminals concurrently. Furthermore, the security hub in the center
was surrounded by high walls. This obscured the vantage point of its prisoners, preventing the
disciplined individuals from determining at any given moment whether the guards were, in fact,
present and monitoring their behaviour. This edifice allowed the power of the guards to be both
visible and unverifiable. Visibility of the center tower served as a constant reminder to the
prisoner that he was continuously being watched and disciplined accordingly. Yet, the
architectural structure remained unverifiable, as the inmates could never be certain whether they
were being watched at any given moment in time.

Foucault contends Bentham' s panopticon is a diagram of power reduced to its ideal form.
Its functional utility increases the number of people to be controlled and monitored and it
simultaneously decreases the number of guards needed for the system to operate efficiently. As it
induces a conscious state of permanent visibility it assures the automatic functioning of power,
the subject being incessantly under the gaze of its dominants, leading him to monitor his
behaviour accordingly.


I believe both Foucault and Basaglia would concur that our current western society is
enclosed in a state of panopticism. Techniques used in our everyday institutions (i.e., schools,
factories, hospitals) perceived to foster intellect, wealth and health, operate under dominant
ideologies that guide our beliefs and behaviours. We are continually being told, explicitly and
implicitly, what is considered normal, acceptable, and desirable and are disciplined when we do
not act accordingly. Dominant practices encountered in our everyday social interactions, either
directly (via direct experience) or indirectly (via media) are internalized and as a consequence
individuals begin to discipline themselves and others. Explicit systems of control and domination
become nested quietly into the woodwork and people begin to behave in ways which reproduce
dominant modes of thinking. Through the internalization of society's gaze the individual learns
to repress unacceptable behaviour and, in fact, subjugace themselves through vigilant self-
monitoring. Thus rendering what Foucault refers to as docile bodies; the person's behaviour
residing under the complete control of these systems of domination, leading the person to
become passive, obedient and compliant.
How does this relate to Autism Discourse?

PDD as other. In Madness and Civilization Foucault contends that from the Classical
period onward society became organized in such a way that the madman imagined himself in a
world of judgment enveloped on all sides; as his behaviours were continually being watched,
judged and condemned. Currently I would argue all of us living in Western society have in some
way or another "internalized the gaze of society". Standardizations such as "what is normal'' are
developed by society and these standards are used to compare all individuals living in society
irrespective of their histories, culture and/or personal experiences. These homogenized
standardizations allow individual performance to be objectively measured in quantitative terms


and placed on a hierarchy, as certain behaviours are assigned values and not others. These
"normalizing judgments" become the greatest instrument of power, and based on the
organization of society certain behaviours are seen as acceptable/unacceptable, normal/abnormal
and healthy/unhealthy. In this instance power is effective and relatively invisible, since
behaviour is not regulated through overt repression but rather through a set of standards and
values associated with normality. Entire professional fields are built on notions of the normal
curve and those who fall outside the arbitrary numerical cutoff of normal are constructed as

This idea of "otherness" is extremely evident in dominant ideologies within
contemporary autism discourse. The cornerstone of empirically supported behavioural
interventions used to treat people with PDD rest on the notion of what is considered acceptable
and unacceptable behaviour. Guided by dominant societal constructions, the professional decides
which autistic behaviours need to be modified by classifying certain behaviours as either
productive or unproductive. To put this in even more concrete terms, one common characteristic
of PDD is the person engages in restricted, repetitive and ritualistic behaviours, interests and
activities, including behaviours such as hand-flapping, rocking, a consistent pre-occupation with
parts of objects and/or inflexible adherence to routines and rituals (APA, 2000). These identified
"autistic" behaviour patterns are constructed as maladaptive and unproductive by the
professional, and techniques used to remediate the behaviour including differential
reinforcement, extinction, and habit role reversal are used to decrease " unacceptable" behaviour
and increase adaptive and socially acceptable behaviours (Miltenberger, 2005).

Examining behavioural interventions through the lens of power allows power
differentials to become transparent. Basaglia might well maintain tnat once a person is labeled


autistic all information is interpreted through the lens of autism, leading irregular or unusual
behaviour patterns a person labeled with PDD displays to be seen as symptoms of the disorder to
be fixed and cured. These ideological constructions reduce inconsistencies in behavioural
variability and all people with PDD's behaviour become objectified through the label of autism.
This provides support for the argument that people with autism display irregular behaviour
patterns that are in need of remediation by a more "rational" other. Based on the professional's
own ideological constructions of the norm which are embedded in culture and personal
experience, it is the trainer who decides which behaviours are deviant and need to be modified.
This modification process does not allow any democratic participation on the part of the labeled
individual as power lies entirely in the hands of the professional doing the defining 14 . Danforth
(2000) asserts the moment a society begins to develop authoritative knowledge about a group of
people, a knowledge that is considered superior to the way studied individuals know and
describe themselves; truth and power become problematic acts of social power. Basaglia and
Foucault would contend that this form of disciplinary power '"makes'" individuals, as it produces
docile bodies to be closely monitored and made into productive citizens.

Ninth Interlude

It has been almost 14 years since I have apparently "recovered" from anorexia. Counter to
professional expertise I have never experienced a relapse as I continue to maintain a healthy
height weight ratio.

Yet, I can 't help but wonder what it was about me that labeled me pathological. Was it the age of
my first diet? Was it a result of being below the expected weight for my age and height? Was it
the sudden change in my eating patterns and exercise routine?

14 It is important to clarity that both the person with autism and the professional are guided by dominant
constructions surrounding pathology, abnormality and deviance. The professional is not the vis a vis of power but is
one of its prime effects. The professional and the autistic are the effect of power and simultaneously to the extent the
individual is affected by this power it becomes the element of articulation, thereby perpetuating power in a circular
motion (Foucault, 1980).


Did I merely begin to "behove " in more anorexic ways ?

Statements including; "I think I 'mfat ", "/ need to exercise ", "Thin is beautiful " continue to
haunt my consciousness. Have I merely learnt to monitor my desire for thinness in a more
socially acceptable way? I no longer starve myself I engage in healthy eating; I no longer
excessively exercise, I exercise regularly to live a healthier lifestyle and reduce stress.

As anorexic behaviours become less excessive, and statements surrounding these behaviours are
reframed in terms of "adopting a healthier lifestyle ", instead of striving to jit the societal mold
of "what is beautiful, " I am no longer seen as having a mental disorder.

Yet societal expectations of what is constructed as beautiful continue to be ingrained in my

It is interesting that thoughts are only labeled illogical, pathological and irrational when they
transfer into overt behaviours. I no longer behave anorexic, therefore I am considered to have
recovered from my eating disorder. It is only when thought processes transfer to overt
behaviours that they become under the gaze of society, and hence subject to condemnation and

Maurice (1993) acknowledges the ambiguity in distinctions between residual symptoms of autism
and normal personality variations: "Negativity, timidness, aggression, forgetfulness,
absentmindedness — it's very hard to refrain from over interpreting and jumping to desolate
conclusions. Especially when each of these traits or tendencies can be seen as giving its roots in
what were once the characteristics (and extreme) behaviours of autism " (p. 296)

Similarly it seems as soon as autistic behaviours become less excessive they are
reconceptualized in terms of the child's personality. Extreme aloofness is reframed in terms of
timidness, failure to respond to certain social expectations is reframed in terms of
forgetfulness/absentmindedness; extreme aggression and inflexibility to changes in routine are
reframed in terms of stubbornness.

It seems as soon as the behaviours no longer interferes with the productive rhythms of society,
the behaviour is no longer constructed in let ms of a mental illness, and is rather seen as a
unique characteristic of the child's personality.


Expanding the Gaze: Prevention, Early detection and Remediation for Individuals Labeled "At-

Through the examination of a series of case studies on madness, Foucault demonstrates
how madness has expanded well beyond the realm of overt behaviour, targeting individuals who
are perceived to be, according to expert psychiatric opinion, "at-risk" of becoming mad.

Referring to a specific murder case in 1955 of a woman (L) and her lover (A) who
murdered the woman's young daughter, Foucault (2003) seeks to show how the rise of
psychiatric opinion in the courtroom allowed for the offense to be '"doubled" with an entire series
of conduct, that is directly unrelated to the act itself, but seen by the psychiatric professional to
be the cause, origin, motivation and starting point of the offense. In reference to the 1955 case,
Foucault (2003) seeks to show that even though A was not directly involved in the death of L's
daughter he was seen by the courts to have influence over L to commit the murder. Therefore it
is A, the societal outcast, who is incapable of appropriating the norms and expectations of
society and highly capable of resorting to crime according to his history — and who, ultimately, is
seen by the courts to have indirectly caused the murder of L's daughter and is thereby
condemned by the courts.

Foucault (2003) uses the term '"psychologico-ethical double" (p. 16) to describe the final
sentence of the case, which targets and condemns A's irregular conduce as the origin and cause
of the crime. Thus, through various case studies Foucault (2003) illustrates how from 1 850
onward psychiatry no longer needed direct acts of madness (i.e., dementia, delirium, mania, etc.)
to evaluate and treat its citizens, as from this point on every behaviour a person exhibited could
be under the "gaze" of the psychiatric professional.


The examination and surveillance by the psychiatrist of certain behaviours a person
displays has further extended to the realm of biology. Now, in addition to evaluating one's
history and previous forms of conduct, the psychiatrist makes attempts to study the biological
basis of behaviour and tries to find the psychology there. Or more often psychiatrists attempt to
patch together what is known about biology with some data on social influence and envision the
psychology to lie somewhere in the middle, thus constituting the bio-psycho-social model
(Parker, 2007). With psychiatric opinion now rooted in organic and functional medicine,
Foucault (2003) argues that psychiatry is further able to exploit the norm, establishing its natural
regularity as a principle of appropriate psychological adjustment.

The medicalization of the abnormal (grounded in biology) Foucault (2003) argues
establishes a type of racism different from ethnic racism, a racism against the "abnormal" —
against those who are carriers of specific conditions and who may randomly transmit to their
ancestors their non-normality. It is this internal racism occurring within groups which permits the
screening of all individuals in society.

Interlude 10

Linking back to my personal anxiety surrounding internal-external binaries (refer to p. 70 for
details), pathology seems to no longer be defined the moment our thought processes transfer to
overt behaviour, but can now be determined well before the occurrence of any overt
manifestation of abnormality takes place. More specifically, the normalizing industry is now
focused on prevention, as the rise in early detection and intervention is heavily based on
neurology. The belief follows that behind each and every disorder lies a distinct neurological
pathway, and that by uncovering the underlying neuro and genetic network, one will be better
able to predict which individuals are "at-risk" of developing specific disorders.

Emerging technologies such as PGD (Pre -implementation Genetic Diagnosis) which detect
chromosomal and genetic mutations in the early stages of embryonic development, allow parents
to be informed of whether or not their child will develop conditions such as Downs syndrome,
Fragile X, Cystic Fibrosis, etc. These technologies have influenced approximately 90% of
families who are told their child will likely have a diagnosis of Down syndrome to terminate


their pregnancy (Harmon, 2007). Parents are bombarded with scientific research, which
speculates their child with Down syndrome will likely have a mild to moderate intellectual
impairment, be at-risk for congenital heart defects as well as other medical problems and will
likely have a life expectancy of around 49.

Counter to scientific research, advocates of families of children with Down syndrome argue the
richness of their children 's lives are poorly understood by the medical profession, and families
need to understand the richness of these children 's existence and the joy they bring to their
families ' everyday lives, prior to deciding to end their pregnancy (Harmon, 2007). Some of these
advocates see these emerging preventative technologies (such as PGD) as a form of eugenics
that essentially eliminates differences.

Considering PGD has identified the genetic mutation involved in Fragile X and seeing that
Fragile X is often co-morbid with autism, it is only a matter of time before medical professionals
are able to identify the gene(s) that causes autism.

Yet, what does this mean for individuals and families who do not see autism as a "disorder" but
rather view autism to be a different way of being and interacting in the world? Will the
elimination of autism, Down syndrome and various other disorders, serve to improve the
conditions of society? Or will it merely lead us to be even less accepting of differences?

Klar-Wolfond (2006, ^5) contends "we always have to ask ourselves what is the end to this
means of genetic research. Must we simply accept the good with the bad in the name of
progress? " Early detection and prevention with the inieniion of eliminating differences is highly
problematic. Ethical and moral issues surrounding preventative technologies such as PGD need
to be dialectically discussed and the ideologies surrounding these technologies need to be
further interrogated.

Organizations that seek to fund autism as a difficult and mysterious disorder in order to cure it
are at war against the autism population not with them. As Klar-Wolfond (2006) maintains
genetic research will go on with or without our support, as there are always people who will find
the genes, sell the pills and abort the fetuses; the only thing we can do is keep talking and giving
speeches, keep making exhibitions and running media campaigns in order to raise society 's
consciousness about these fundamental issues.

Chapter 9: The Problem with Dominant Language

"When reason begins to judge madness, the distance between reason and unreason is already
fixed: it is the distance created between the subject of judgment and the object that is judged"
(Scheper Hughes & Lovell, 1987, p. 235).

The Enlightenment ideal portrays the human as a rational, coherent, unified and stable

system. Humanism posits the subject is able to accurately reflect him/her self through the


transparent medium of language. Yet, as Deleuze and Guattari (1987) point out, dominant
language systems are pre-established structures of society, both preceding and exceeding the
individual. In other words, in order for one to adequately express oneself in comprehensible
terms one must already use existing linguistic codes developed by the local culture. A signifier
therefore only becomes meaningful once we, as a collective decide it means something. Prior to
collective agreement, the spoken is merely a collection of meaningless, senseless sounds.
Mutual understanding is therefore based on this order and premised on our collective recycling
of words and phrases in various combinations (Skott-Myhre, 2007). It is through this repetition
that certain words and phrases are appropriated by the majority and become meaningful to the
rest of society.

Foucault, Basaglia and Deleuze and Guattari speak to the problematic nature of language
which privileges certain pre-established language codes over others, immobilizing subordinate
languages to never be assimilated into our rational way of understanding and interpreting the
world. Basaglia points out that even peculiar and incoherent speech (according to the dominant
culture) may be a voice of protest and possibly the only mode of resistance available to those
who are continuously silenced, disgraced and excluded. Me points out the illogical nature of this
rational way of thinking: if delusional speech is madness' subjective expression of its own needs
and desires, which can only be expressed through irrationality and unreason, it will never be able
to become the voice of rationality and power.
The Question of Individual Voice

To further elaborate on notions surrounding language as a social construction, critical
feminist theorists such as Spivak (2006) and Lorde (2001) argue that the capacity of the
subaltern to speak — as an act which conveys meaning and generates mutual understanding — is


impossible since one cannot stand outside the dominant regimes of meaning making. Meaning in
this sense relies on acts of translation and agreement between the subaltern and the dominant
group. Pre-established linguistic codes privilege certain forms of speech over others, leading
groups to abandon their subordinate language codes in order to gain access to privilege
associated with the dominant group. Privileging certain language systems over others forces all
knowledge to be filtered through the dominant framework — if it is to have any legitimate
meaning (Skott-Myhre, 2007). In this context individual voice does not exist as one is born into a
pre-establish language system that labels which language codes are deemed superior to others. If
one is to effectively assimilate into the predominant culture they are forced to appropriate these
dominant language codes.

Lorde (1984) further illustrates this in her essay, ''The master's tools will never dismantle
the master's house," when she argues that using the theories and language of the dominant
society may allow for temporary change in a society — yet it will never be able to bring about
genuine social change. She argues the subordinate must find his/her own mode of expression
outside these dominant realms.
How does this relate to Autism Discourse?

One of the three key characteristics of children with PDD is they commonly display
qualitative impairments in communication which may include a delay or lack of spoken
language, problems initiating and sustaining information, and/or stereotyped, repetitive and
idiosyncratic language patterns (APA, 2000). With this in mind, the social service industry has
designed and at times successfully implemented various treatment modalities used to foster
language and communication with this group of individuals. These include techniques such as
Picture Exchange Communication Systems (PECS), facilitated communication, augmentative


communication systems and sign language. At first glance these interventions appear to be
achieving their pragmatic objectives helping people with autism express themselves in ways "the
normal" can understand. Yet, Foucault, Basaglia, Deleuze and Guattari would likely be skeptical
of these techniques, investigating the underlying function techniques (such as the ones
mentioned above) serve in relation to the larger society.

They would likely conclude that dominant techniques used to produce speech are guided
by the dominant beliefs and ideologies surrounding what is considered appropriate speech. These
techniques not only perpetuate current stereotypes, justifying ihe exclusion of those who do not
or can not adequately partake in this linguistic exchange of information, but may actually silence
autism's unique voice and mode of expression. Standardized tools used to foster communication
are designed with a set of guidelines in mind including what is considered acceptable and
unacceptable speech and communication patterns. Subjects are disciplined accordingly and
thereby silenced if they do not conform to these dominant speech modes. Thus, people with PDD
lose their ability to determine their own modes of speech and expression as they are forced to
assimilate into the dominant speech regimes in order for their voice to be heard and taken

Chapter 10. Insurrection of Subjugated Knowledges
Foucault (1980) suggests over the past several decades an increasing vulnerability to the
criticism of things, institutional practices and dominant discourses has occurred. This increasing
criticism of totalitarian theories which guide our thinking has produced a new kind of reality
which he refers to as a "return to knowledge": where theoretical production is autonomous and
non-centralized and the validity of knowledge is not-reliant on the approval of pre-established
regimes of thought (Foucault, 1980, p. 81). When Foucault speaks of mis sensitivity to the


criticism of things, he is referring to alternative discourses (i.e., postmodernism, critical theory,
post-colonialism, post-structuralism, etc.) which have emerged over the last several decades that
unpack, ideas surrounding what can and should be considered acceptable knowledge. Gaining an
increasing amount of attention in the academic field, it is these alternative ways of knowing,
which were once nested quietly in the woodwork that are being brought forth, establishing
legitimacy, and raising fundamental questions about the nature of knowledge.

Foucault (1976) contends it is this increasing criticism towards the production of
knowledge that has allowed for the "insurrection of subjugated knowledges'' (p. 81). When
Foucault speaks of insurrection of knowledge he is referring to two central ideas. First, he is
referring to historical contents that have been buried and concealed by functionalist systems of
thought and production. For example, anxieties surrounding behaviour interventions are often
glossed over with terms such as ''effective", "empirically validated" and 'scientifically
supported". These terms are used to justify these technique and procedures according to what
works and what does not, yet these terms unreflectively accept the theoretical foundations
behaviour interventions are grounded in. Thus, issues related to power, progress, reality,
language, etc. are left seemingly unquestioned. Foucault believes it is these emerging histories
(e.g. anxieties surrounding behaviour interventions) that have continually been silenced
throughout the past (due to the rise in scientism), that will allow us to re-examine the ruptural
effects of conflict and struggle encountered by the current organization of society.

Second, when Foucault speaks of insurrection of knowledge he is referring to an entire
set of knowledges that have been deemed irrelevant or largely ignored by society. These naive
knowledges have been located at the bottom of the hierarchy, buried beneath cognition and
science. For example, Foucault would argue mat it is the knowledges of people of subordinate


statuses (e.g., people with autism) who are commonly constructed as irrational and illogical
according to science that we need to focus our attention on. In line with this, Foucault argues it is
only by unveiling these disqualified knowledges that are local and particular, that current Truths
structuring society can be adequately assessed and evaluated.

From the theoretical perspective of Deleuze and Guattari (1987) the primary role of
Foucault's insurrection of subjugated knowledges is to "make the major language stammer" (p.
110). Buried within what is currently constructed as the "Truth" (i.e., order words) remain
knowledges that have been largely ignored and discredited. It is these subjugated knoweldges
that will allow us to escape the standard models of truth, knowledge, language and
individualism, transforming these concepts into rites of passage.

With this in mind, the following chapter will discuss an alternative PDD discourse that is
predominately directed by individuals who have been labeled on the autism spectrum. This
emerging discourse, which still predominately falls under modernist constructions of the subject

and notions surrounding language and objectivity, attempts to make "the major language minor",


by opposing many of the dominant autism regimes of thought, specifically related autism as a
neurological disorder that is in need of early intensive intervention.


Interlude 11

Recently, I was asked lo co-present a paper for the Autism Society of Niagara, reviewing
anxiety treatments for people on the Autism Spectrum. Following the presentation a number of
parents came up to inquire about their children and seek advice on current treatment
recommendations for the dually diagnosed.

Coincidentally, the conversation led to heated discussion about a recent article in the
National Post which discussed a group of people labeled with high functioning autism (HFA)
who were opposing notions associated with medical model perspectives in which autism is
portrayed as a disease in need of a cure. The parent with whom I was having the conversation
became visibly upset during the discussion. She explained that without the label, her low


functioning son would be left without the necessary services and supports needed for him to
operate and function successfully in school, and in society at large. She went on to argue that
autistics who opposed the label and who were critical of the need for empirically validated
treatments were, in fact, narrow minded as they were not taking into account people on the lower
end of the spectrum. She went on to hypothesize that even though people with HFA and
Aspergers may have typical language and communication patterns, they often lack "a theory of
mind"; meaning they typically display the inability to describe the mental activities of others,
including understanding another 's thoughts, feelings, beliefs and desires. The conversation
ended with her suggesting these emerging autistic voices should not be taken seriously, as these
individuals lack empathy and concern for all people on the spectrum, and are therefore not
representative of her son 's diagnosis or his life experiences.

Empathizing with the concerns of this parent, I could relate to her intense feelings about
services and supports being taken away from her son. I questioned whether HFA could, in fact,
speak on behalf of LF A (low functioning autistics), and what the repercussions of a movement
such as this woidd mean to families of children with autism who already lack funding, support
and resources. Then it dawned on me. Regardless of whether HFA can represent the extreme
variability on the spectrum, these individuals have something important to say about their
personal experiences with the autism label. Although this may be inconsistent with our current
thinking about autism, disregarding these statements, by seeking to pathologize them — "HFA
lack empathy therefore their voice should not be heard or taken seriously " — can be seen to
perform the same function as taking away services for children on the lower end of the spectrum,
as they both silence autism 's voice. Furthermore, if HFA cannot speak on behalf of LF A, then
who gives us the right to speak on behalf of children with autism? Although HFA have language
and communication, they still experience the stigma of the autism label, something that we, the
typical population, cannot personally relate to. Dividing people into binaries categories of
normal-abnormal, Low Functioning Autism-High Functioning Autism, Autistic Disorder-
Aspergers Syndrome is not productive, and separates our commonalities and our desire to
support those who are continually stigmatized, labeled and excluded.

Chapter 1 1 : Autism Voices
"Autism isn 't a disease, it s a different way of being human "
At the forefront of this new autism movement (to which 1 refer to as an emerging autism
discourse) are people with HFA and Aspergers (Aspies), including Michelle Dawson (2003a,
2003b, 2004a, 2004b, 2005, 2007) John Sinclair (1993), Dave Spicer (2005, 2006. 2007),
Amanda Baggs (2007), Donna Williams (1993) and Temple Grandin (2005), to name a few.
Evocative web sites are being created at a high frequency and are run by people with autism and
parents of children with autism, who are resisting our current way of understanding autism.


These include: Autism Diva, The Joy of Autism, Autism Hub, The Real Voice of Autism,
Abnormal Diversity, Aspies for Freedom, Autism Network International and the Neurodiversity

One of the most interesting collaborative projects is occurring at the University of
Montreal. Dr. Laurent Mottron, a renowned autism researcher and distinguished professor of
psychiatry, is working with Michelle Dawson, a person with autism who is a human rights
advocate. Using the scientific method to oppose dominant autism theories, Mottron and Dawson
seek to alter society's current perceptions of autism. Dawson's main role is to critique the
studies' design and form conclusions, contributing to 20% of the final published research papers.
Although Dawson does not have a formal post-secondary oiploma, Mottron states Dawson
continuously challenges his assumptions of autism, and her work has been extremely influential
and inspiring, changing the way the world views autism that will have long-lasting impacts on
society (Toronto Globe & Mail, 2006).

Truths within Autism Discourse .-^evishec


/. PDD is considered a mental disorder; a deviation from what is considered normal. Diagnosis
is premised on the person meeting a specific number of behavioural criteria found in the DSM-

Parents, professionals and people labeled PDD who are operating within this emerging

autism discourse argue the medical model perspective of autism is inadequate, incomplete and

based on the faulty premise that autism is a disease. They argue that using the DSM-IV to

diagnose people with autism forces all behaviour to be interpreted through a pathogenic lens. "I

need to be told that all the work 1 do will be completely compromised by my diagnosis. My work

will only be used to verify my symptoms. Then it will be dismissed" (Dawson, 2004a, ^13).


As well, they argue using a medical perspective to understand autism provides an incomplete

description, one which fails to acknowledge people with autism's own personal experiences with

the disorder." I think living with autism for 41 years is a pretty good degree." (Anonymous

Person with Autism, Teaching versus Remediation Discussion, 2007, ^75).

Furthermore, adopting a medical perspective also fails to consider how the current

organization of society contributes to definitions of deviance.

People with autistic spectrum disorders are not victims of autism, they are victims of
society. They do not suffer from their developmental differences, they suffer from
prejudice, ignorance, lack of understanding, exploitation, verbal abuse, all this and more
from that sector of society which considers itself socially able. (Hewson, 2001, ^1)

These individuals state that operating under the assumption that PDD is a deviation from

what is considered normal forces autism to be filtered through the lens of negativity. Rather than

focusing on deficits, many people within this emerging discourse suggest the need for empirical

research to focus on autism's strengths.

For some reason once you get a label, you know the strengths, but it's like everything is
measured. They focus on your weakness and they become the thing that you have to get
stronger and they completely ignore xhe strengths, and they fail to realize that again if you
apply the very same principle you use throughout society, of supporting the weaknesses,
enhancing, developing and employing the strengths, you may actually get somewhere
(Tisoncik, 2006).

"Whether autism or Asperger's, I'm among some of the best and most fascinating human beings

who ever existed. I have a lot to live up to and this I need to be told" (Dawson, 2004a, 1J12).

Furthermore, these people articulate the inherent problems with differential diagnosis.

Categorizing people into high and low functioning, Autistic Disorder versus Aspergers does not

seem to be of any additional value for these individuals.

Autism versus Asperger's is not a value judgment or a contest. It is not better/worse or
us/them. And if my diagnosis is Asperger's or if it isn't, I need to be told that Asperger's
is not and has never been a "mild" form of autism (Dawson, 2004a, %l0).


"It is my profound opinion that those who desire to divide us into high and low functioning
autistics deliver a great disservice to our common quest for true equality" (Spicer, 2007, fl3).
Dave Spicer argues a person with high functioning autism or Aspergers should not be considered
to have ''just a touch of autism." (Spicer, 2006). He points out the illogicality of this statement,
arguing it is like saying someone from Russia who speaks English so fluently that there is no
trace of an accent, is not Russian. Making a statement such as this would be nonsensical and
would deprive the individual of his Russian heritage and thus, cultural identity. Yet, individuals
with autism who attain normal functioning are seen as being miraculously cured of autism. For
Spicer, just because a person is able to behave in normal and acceptable ways does not mean
he/she is no longer autistic, since one cannot separate the autism from the individual, as it is an
inherent part of one's identity.

Based on the voices within this emergent autism discourse empirical researchers are
beginning to take some of these claims seriously. Specifically, Morton Ann Gernsbacher, who is
considered one of the leading experimental psychologists in me United States, and Thomas
Zeffiro (MD/PhD), director of the Center for Functional and Molecular Imaging in Georgetown
University Medical Center, suggest the need to radically reorient the scientific study of autism,
arguing autism should not be viewed as a disease but rather should be seen from the same
perspective as those with other neurological and sensory deficits, such as the visual and/or
hearing impaired. They propose to look at autism through a multi-discipiinary perspective
bringing together leading scholais from a variety of different fields, such as cognitive science,
medicine, engineering, and public policy. The ultimate goal of this innovative research project
will be to understand autism as a neurological difference and to empirically identify the strengths


and competencies this group demonstrates, to determine how people with autism can live
successfully (Dawson, 2007).

2. PDD is most commonly seen as a neurological deficit that has a genetic and biological basis.

Neurotypical disorder (NT) is a neurobiological disorder characterized by preoccupation
with social concerns, delusions of superiority, and obsession with conformity. Tragically,
as many as 9625 out. of every 10,000 individuals may be neurotypical... There is no
known cure for neurotypical Syndrome (Institute for the Study of the Neurologically
Typical 1998-1999,111).

The above statement is taken from a website developed by people on the autism

spectrum. It attempts to provide a humorous account of the belief that autism is a disease by

seeking to establish the argument as irrational. Although most professionals, parents and people

with PDD alike, would agree that individuals with autism display differences in neurological

patterning when compared to their non-PDD counterparts, what many individuals are

challenging is how these differences are portrayed. The neurociversity movement argues

establishing hierarchies of neurological patterning is useless, if one considers autism as merely a

different way of being human. For example, one does not sa> a dog is ili or dumb because it is

unable to climb a tree, as this would only be the case if you were basing the dog's capacities on

that of a cat's, which would be extremely illogical and based on false premises (Woodford,

2006a, 1| 15). This characterization is not to say people with autism are not human or less than

human when compared to neurotypicals, but rather it is to say that humanity is composed of

heterogeneity, and we should be embracing these differences rather than attempting to eradicate

them. "Autistics have different brain — the cells are different, tne ceii organization is different

and for certain tasks in the brain is different" (Woodford, 2006a, f 17).

Autism is a way of being. It is pervasive; it colors every experience, every
sensation, perception, thought, emotion, and encounter, every aspect of existence.


It is not possible to separate the autism from the person — and if it were possible, the
person you'd have left would not be the same person you started with (Sinclair, 1993, ^5)

Many people with autism can learn to act normal. The issue is that on the inside they do
not feel normal. We process information differently and that is not something anyone can
see on the outside it is the hidden side of autism (Anonymous Person with Autism,
Teaching versus Remediation Discussion, 2007, ^55)

3. Diagnosis of PDD is currently on the rise. Prevalence rates are increasing at a greater than
expected frequency.

Media attention directed at autism surrounds arguments questioning whether autism is, in

fact, an epidemic. Most professionals and researchers contend that autism is not an epidemic, as

there is no strong candidate for any environmental exposure associated with autism (Fombonne,

2003). Although a secular increase in autism cannot be ruled out. elevated diagnosis can be

attributed to methodological factors (i.e., broadened diagnostic descriptions, more reliable and

valid assessment instruments, etc.). Individuals operating within this critical emergent paradigm

argue there is no mysterious, underlying cause for autism; rather where the real mystification lies

is why individuals with autism are not seen as human beings and why they are left without

individual rights (Dawson, 2003a, ^1 8;. Dawson (2003b) argues the artificial increase in autism

"is artefactual, cultural and sensationalist, and has nothing to do with science, medicine, or the

ethical practice of medicine" (sic, ^29). She speculates the false epidemic has gotten autism a lot

of attention, not to mention autism researchers a substantial increase in funding (Fombonne,


a) Sub-truth: 50-70% of people on the PDD also have an intellectual impairment (Yeargin-
Allsopp et at, 2003).

Interestingly, the idea that autism is frequently co-morbid with an intellectual impairment
has been put into question by Dawson et al., (2005). They argue that tests used to assess


intellect are normalcentric, as they are based on the norms of typical populations and not the
norms for people with autism. The results of their study revealed people on the PDD
spectrum scored higher on the Raven's Progressive Matrices (RPM), a measure of fluid
intelligence requiring abstract problem solving analysis when compared to the Wechsler
scales (WISC-III, WAIS-I1I). The opposite was true for people from the typical population;
they scored higher on the Wechsler scales than on the RPM. Furthermore, a detailed case
study of a 15 year old male who was considered non-verbal, having a near fioor score (.01
percentile) on the Wechsler FSIQ, was combined with a near ceiling score on the RPM (95 1
percentile). The authors speculate autistic intelligence should be considered different from
non-autistic intelligence, and thereby should be measured in terms of autism norms and not
the norms of typical populations.

Interlude 12

As mentioned above, Audrey horde (1984) argues the master 's tools can never be used to
dismantle the master 's house, contending that using ihe theories and language of the dominant
society may allow for temporary change within that society but it will never be able to bring
about genuine social change. For horde ana others being critical of this emergent autism
discourse would likely acknowledge the flawed nature of this movement, as it maintains
dichotomies (i.e., strengths/weaknesses, good/bad, normal/abnormal), adopts the scientific
method to" prove" people with autism 's competencies (i.e., Gernsbackner and Zeffiro research)
and relies heavily on language to illustrate the problematic nature of language (i.e., Amanda

Yet to believe we can fully position ourselves outside the many discourses, both presently and
historically, that cloud our judgments and interpretations of the world is to believe that we, as
individuals, supersede the societal structures we are currently operating within. Throughout this
paper I have attempted to interrogate current beliefs and assumptions surrounding myself and
how this relates to people with a diagnosis of autism. In doing so, I have tried to challenged y
current representations of the world. However, I recognize this process as tenuous and partial,
and acknowledge that in many points throughout the process I have failed, perpetuating the
current structures, assumptions, beliefs and stereotypes that I wish to abolish.

If there is one objective I wish to achieve by writing this thesis, it is the importance of developing
a critical consciousness. This goes well beyond fulfilling certain ethical obligations, as it


involves continuously questioning the epistemological and ontological foundations that colour
every belief, value, attitude and experience. What I have come to realize through this process is
that rather than pretend inconsistencies do not exist, we need to identify these contradictions in
our thought processes and through the continuous process of deterritorlialization and
reterritorialization (Deleuze & Guattari, 1987), deconstruction and reconstruction (Derrida as
cited in Stocker, 2006), question every taken-for-granted truth encumbering our lived

4. PDD is in need of remediation. Currently, empirical evidence suggests Early Intensive
Behavioural Intervention (EIBI) is the most successful approach to reducing autism

Recent empirical research evaluating IB1 is unable to replicate Lovaas' (1987)
outstanding IBI treatment outcome, where 47% of the children in the intensive behavioural
treatment group attained normal functioning (i.e., normal IQ, integrated into regular school
system, indistinguishable from peers) (Anderson et al., 1987; Birnbrauer & Leach, 1993; Boyd &
Corley, 2001; Howard et al., 2005; Ozonoff & Cathcart, 1998; Sallows & Graupner, 2005;
Sheinkopf and Siegal, 1998; Smith et al., 2000).

A variety of reasons why current empirical research has been unable to replicate the
Lovaas (1987) results have been put forth. These include treatment intensity (Anderson et al.,
1987; Eikeseth et al., 2002; Smith et al., 1997), the chronological and mental age of the children
at the time of treatment entry (Anderson et al., 1987), the length of the intervention (Anderson et
al., 1987, Eikeseth et al., 2002) and methodological flaws in design (lack of random assignment,
instrumentation, statistical regression) (Gresham & Macmillian, 1997; Smith et al., 1997).
Furthermore, Lovaas' (1987) additional control procedure in this study provides another
explanation as to why this may be the case. In order to ensure at least one component of the
treatment was successful, he systematically withheld contingent aversives (a loud "no" and
occasional slap to the thigh), gradually introducing this component experimentally to 4 children


in both the treatment and control group one. Lovaas (1987) found that when contingent aversives
were systematically withheld a limited amount of positive behaviour change occurred. Gradual
introductions to contingent aversives resulted in rapid and stable changes in positive behaviours,
including reductions in inappropriate behaviours and increases in adaptive behaviours. Lovaas
(1987) speculates that "it is therefore unlikely that treatment effects could be replicated without
this component (contingent aversives)" (p. 8). This speculation has been supported by additional
authors (Anderson et al., 1987; Gresham & Macmillian, 1997; Smith et al., 1997)

Due to ethical issues attached to the use of punishment as an appropriate procedure, few
if any behaviour treatments targeting children with autism still utilize these procedures.
However, concerns still exist about the ethics of using principles of applied behaviour analysis to
modify certain behaviours.

In Michelle Dawson's (2004b) paper, entitled The Misbehaviour of Behaviourists, she
questions the ethical and human rights aspects of the autism-ABA discourse. Relating ABA to
power differentials, she argues autistic human rights are being violated every time power is used
to substitute odd but necessary behaviours to autistics (e.g., rocking, hand flapping, analytical
rather than social or imaginative play) with behaviours that are normal and socially expected
(eye contact, appropriate gaze, joint attention) but considered useless to the autistic.

Dawson (2004b) argues that in an area where clients are unable to verbally consent to
treatment, ethical considerations surrounding who decides what behaviours to modify are vital to
autism-ABA discussion. Rekers and Lovaas' (1974) study, which used principles of
reinforcement to modify a 5 year old boy's cross gendered behaviour, was one of the first to raise
the fundamental question: "to whom does the therapist owe first allegiance: to the client (or in
this case the client's parents), to the therapist's own values, or to the prevailing relevant social


norms?" (Winkler, 1977, p. 549). Undesirable feminine behaviours (i.e., dressing in women's

clothing, playing with dolls, feminine gestures) were extinguished and replaced with desirable

masculine behaviours (e.g., dressing in a football helmet, playing with a dart gun, toy soldiers,

dump truck etc.). Winkler (1977) argues adopting typical sex role behaviours are not necessarily

needed for optimal development, alluding to the conflict between a desire to respond to parent

concerns and a desire to create normal psychological adjustment. He posits that in the end the

therapist has to make a value judgment which ideally is based on full knowledge of applicable

and accessible information. Value judgments regarding what should be considered normative and

appropriate behaviour and what is deviant and unacceptable behaviour, and according to whose

standards, are still pressing issues within autism treatment today. Dawson (2004b) concludes that

without addressing ethical issues related to treatment one cannot evaluate what recovery means

and how it might manifest itself. Phrases like "scientifically proven" and "medically necessary"

encompass assumptions that scientific and medical ethics have been already considered, yet

Dawson (2004b) argues these issues have remained relatively untouched, unexamined and

unchallenged by professionals. Additionally, people labeled autistic relay similar concerns:

It's like they thieved this chunk of human life and ripped off all the context of the
relationship between the rewarder and rewardee, punisher and punished, and deny the
rewarder/punisher could be flat out wrong in what they are choosing to notice, choosing
to judge as good or bad, and choosing to reward or punish. There's an assumption that the
ABA types are inherently going to do the right thing. (Camille, Teaching versus
Remediation Discussion, 2007, ^|2).

Furthermore, many individuals labeled autistic within this emerging discourse argue it is

absolutely outlandish to suggest exposure to intensive behavioural interventions can

miraculously cure an individual from autism. They argue autism cannot be considered a distinct

entity, as it is inextricably linked to the person and his/her identity. Even when treatment is

successful and autistics begin to behave in normal and acceptable ways, many state that inside


they feel different. "I will never be non autistic but I am growing and learning more every

day. ..trying to get a disabled person to "act" normal may be the biggest mistake being made

within all systems" (Anonymous Person with Autism, Teaching versus Remediation Discussion,

2007, Y73).

Even the idea that autism is separate from the child's being and experience, is to suggest
that autistics should not be taught the way other children are taught. It doesn't respect the
disability and does not ask us to question ourselves or make a better effort to learning
about autism and how to best teach out autistic children or accommodate their learning
style (Klar-Wolfond, Teaching vs. Remediation Discussion, 2007, ^12).

Furthermore, attempting to act normally may actually impede the individual from

knowing their "true" self. Donna Williams (1993) expresses this notion of "losing oneself in the

book Nobody Nowhere. She describes two personalities materializing in the search for

acceptance and control: Carol, who strived for the unacceptable, social acceptance — "I learned

to talk at people. . .1 had become good at being told what to do, as this was what people liked and

people liked Carol (p. 21); and Willie, her second "face" who confronted the world with

resentment and self-control, detaching himself from the world around him. These emergent

personalities permitted Donna to "hide in the cupboard" (p. 20), and in the process of hiding her

true self she lost her ability to feel: "I like so many disturbed people, began to hurt myself in

order to feel something. It seemed that others people's normality was the road to my insanity.

My ability to close them out kept me sane" (p. 56).

Interlude 13

It dawned on me yesterday right before I went on stage to present a paper at the Mapping The
New Knowledges conference. As my anxieties were obviously elevated, a friend, in an attempt to
give comfort, turned to me and said "Don 't worry Sarah, you will do great, look how smart you
look today! " Being in a business suit, impersonating the role of a professional, academic and
researcher, I wondered if this was, in fact, how people with autism feel when they are trained to
modify their behaviour in order to be accepted by the rest of society.


The role of the academic is one of status (hence the business suit), is one of expertise (hence the
academic language), and is one of intellect (hence the highly theoretical piece I was presenting).
In order to portray these qualities, I had to inhibit my susceptibility to speak without thinking, my
awkward and sometimes clumsy mannerisms, my emotions, and my intense fear of being judged
and criticized. Any slight sign of any of these devalued qualities will ultimately reveal myself as a
fraud in the academy, leading my work to be viewed as insignificant, meaningless or useless
knowledge that is not to be taken seriously. Hiding certain personas to fulfill certain obligations
and social roles inhibits me from truly feeling comfortable and accepted in the academic

Similarly, people with autism are able to fulfill certain obligations and social roles, leading
many to conclude they are no longer autistic. Yet, this may, in fact, prevent this group from ever
feeling truly comfortable living in society. As Amanda Baggs points out "we live in a world
where how close to normal you appear determines your sense of self-worth ". Any slight sign of
abnormality is portrayed as a weakness, a devalued quality that is a "residual " symptom of the
disorder. Leading us (myself and likely others, possibly including people with autism as well) to
live in constant fear that one day their devalued qualities will surface at an inappropriate time
and their entire sense of personhood will be thrown into question.

Autism labels are based on a person meeting a specific number of behavioural criteria. Thought
processes cannot be measured until they are verbalized and are thereby left out of the diagnostic
equation. Unlike me, someone who is sensitive to the social expectations placed upon me, is it
possible that children with autism are merely worse at internalizing the gaze of society? In other
words are children with autism less sensitive to the predominant norms and social expectations
of how to act?

Quite possibly when children with autism act (i.e., by engaging in inappropriate, odd, irregular
behaviour) they are behaving "freely"; acting free of undue external influence.

Could we possibly be making these individuals docile by placing constraints on their ability to
act? Dismissing these behaviours as unproductive and inappropriate rather than acts of free

Although the above arguments offer a critical framework to examine behavioural
interventions, I would argue this emergent discourse is not anti-ABA, as some would argue
(Weintraub, n/d), yet much of the discussions surrounding ABA/IBI highlight the need for self-
reflectivity. Rather than focusing on the grand meta-narratives of autism treatment (i.e., what
treatment is successful for most people with autism), many autism advocates specify the need to
be attuned to the heterogeneity of each and every individual with an autism diagnosis. Some urge


us to inquire about our own motives and drives for making certain demands on autistics,

continuously questioning why we feel compelled to help modify certain behaviours (Klar-

Wolfond, Teaching vs. Remediation Discussion, 2007). Others focus on the problematic nature

associated with using a limited and rigid framework when working with autistics. Autistics may

communicate in a multitude of ways and focusing on only one medium of communication may

hinder one's ability to observe and respond to alternative means of communication.

"I see these children with more severe autism communicating in many different
ways. I don't think "neurotypicals" can see it. I don't mean to be rude but I really think
they miss out on seeing what these children are expressing. Maybe it is because of my
own autism and I see it from a different angle than someone without autism. They would
never listen to me because they have a degree etc." (Anonymous Person with Autism,
Teaching versus Remediation Discussion, 2007, ^74)

"I am not saying that I know much about parenting but I do know something about
parenting my son, Adam. I am suggesting that we can all do our part to really observe
behaviours and ask ourselves whose purpose we are serving when we are making certain
demands" (Klar-Wolfond, Teaching versus Remediation Discussion, 2007,^9).

Interlude 14

I have never felt truly comfortable implementing behaviour principles. For myself reducing the
human condition to a set of stimulus and response conditions did not seem to capture the essence
of humanity. With a specific set of objectives in mind, procedures used by the behaviour modifier
appear to be forced, deliberate, repetitive, and to lack the spontaneity of typical everyday social

Despite the above anxieties, I cannot disregard the positive impact Skinner ian principles have
had on the disability population. Throughout the past 50 years, the scientific validation of
behaviour principles has led society to conclude that these techniques are, in fact, effective at
"training the untrainable " (Kleinert, 1997); and it is these findings about the malleability of the
human brain that have further supported professionals, parents and people with disabilities in
their quest to access services.

Yet, this positive ideological shift in the way individuals with disabilities are viewed has also
brought about a variety of "side effects ". First, it places constraints on what types of services
are available to certain groups of individuals. Behaviour interventions offer a large body of
empirical support for its effectiveness, leading provinces such as Ontario to only provide EIB1
funding for families of children with autism. This deprives parents of the choice of selecting
alternatives therapies for their child. Furthermore, the rise in behaviourism for teaching, helping


and in some cases "curing " individuals with disabilities, has led some professionals and service
providers to narrow their focus — using solely behaviour principles to treat individuals.

Currently, entire professional industries are dedicated to certifying specific professionals in the
field of behaviour analysis (Board Certified Behaviour Analyst, 1998-2007). With only a limited
ideological framework to operate within, these individuals are given training on how to
effectively implement behaviour principles, but in turn, are left without a critical framework to
investigate the function of these techniques, or an alternative framework to explore other
possible ways of interacting with this group of people. Even Lovaas et ai, (1980), the master
himself, recognized the limitations of the behavioural approach: "keep in mind that just as a
physicist needs to know more than the laws of gravity to transport a person to the moon, you
need to know more than the laws of operant behaviour to move a person to more adequate
functioning" (p. 3).

If we were to view therapy from the traditional health perspective of providing remediation to
specific health problems following a diagnosis, then in some regard behaviour therapy appears
to be achieving its objectives. But, as I have noted in my previous writing, to change the
behaviours associated with the illness does not necessarily mean the feelings/internal workings
associated with the illness also dissipate (refer to p. 71).

Empirical research has displayed behavioural techniques to be extremely successful at reducing
self-injurious behaviours (Iwata et ai, 1994), and using operant conditioning to reduce extreme
aggression towards self and other prohibits harm: but it should not be considered therapy.

Therapy is a process of healing and should be based on mutual respect and genuine
understanding of both parties, ultimately leading to the empowerment and transformation of
both the self and other. The eradication of extreme aggressive behaviours such as SIB should not
be seen as the endpoint of therapy, but rather the beginning as it is a precondition for exploring
other possible types of interaction.

Sometimes I feel we become so hung up on modifying the person 's behaviour that we lose sight
of the ultimate goal of developing a genuine relationship based on mutual respect and
reciprocity, which opens up possibilities for creative interaction.

5. A window of opportunity exists for children with PDD, meaning that exposing children to
treatment early can make the difference between a child who is severely disabled and one who
has some degree of normal functioning.

Considering EIBI is the only scientifically proven treatment for individuals with autism

many professionals and parents argue that people with autism have the right to the most effective

therapeutic environment possible (Houten et al., 1988). Equating autism with cancer, Maurice


(1993) argues behavioural intervention is the most effective treatment to-date for children with
autism, and therefore should be provided to every individual suffering from this disease.
Although 1BI, like chemotherapy, cannot guarantee recovery for everyone, she questions whether
this is a sufficient reason to deprive people access to these services. Given the high cost of
intensive behavioural interventions of approximately $60,000 US a year (Jacobson et al., 1998),
parents and professionals within the autism community are banding together to fight for
mandatory funding and treatment for each and every individual. Arguments are typically
immersed in rights discourses surrounding notions of the individual's right to treatment and
hence equality (Houten et al., 1988).

Dawson's paper, The Misbehaviour of Behaviourists, provides an alterative framework
to examine this argument. She discusses false oppositions, which use an if-then, either-or
construction that is based on faulty premises and that is limited to alternative explanations. She
argues the belief that autistics need treatment or they are doomed to for failure is, in fact, false.
False oppositions and false equations (for example, in Maurice's book, autism=cancer) have
become central to the legal, scientific and promotion of the autism- ABA industry. She argues
within this medical model discourse, autism becomes incompatible with achievement, intellect,
integrity, dignity, autonomy, and learning. Either the person with autism gets 1B1, and begins to
behave in normative ways, or the person with autism is destined to require life long support.

If we are to take the above arguments within this emergent discourse seriously, namely
that autism is socially constructed, that autism should not be considered a disease to be cured or
fixed, and that autism needs to be re-theorized in terms of its strengths, then arguments
surrounding mandatory treatment and IBI become questionable. Best outcome would not be


defined by our value-laden standards that non-autistics should act, play, move, communicate the

way "neurotypicals" do. Dawson (2003a) states:

Usually equality is not contingent on the citizen resembling all the other citizens. Jewish
people are not required to be less Jewish, nor homosexuals less homosexual. In their own
time, both these groups were vilified and considered plagues, and there have been
aggressive treatments for homosexuality. Equality rights for autistics, in contrast to all
other Canadians, amount to an obligation to be or act less autistic or not autistic at all.
Remarkably, everyone agrees to this also. . . I am autistic and, because I am excluded
from the Charter of Rights and Freedoms, I am not a Canadian. Now I am not even sure I
am human fl[8, \\ 5)

Interlude 15

"To those who are frightened enough and desperate enough, it becomes harder and harder to
hold on to sense and intelligence, reason and objectivity" (Maurice, 1993, p. 139).

The first time 1 read Maurice 's novel I was persuaded by her words, anxieties and fears. Her
personal narrative focused on how she was influenced by the theoretical underpinning of holding
therapy and almost abandoned the most effective treatment; behaviour modification, which
ultimately led to the "recovery" of both her children. I saw myself in Maurice 's story, as she
articulated similar anxieties 1 currently hold towards behaviour modification including its
intrusive and mechanical nature. This led me to interrogate my own subjectivities, in particular
the "joining" method used in IMTI, as it was guided by a similar philosophy as holding therapy,
with a focus on love and acceptance.

Acting out of desperation, concern, anxiety, fear and even intuition may be a "setting event" for
parents to be easily persuaded by treatments that are dominated by theoretical and psycho
"babble " and are not supported by empirical evidence. This, in turn, could lead parents to divert
their attention away from effective treatments and waste a considerable amount of time, money,
resources and energy on experimental treatments that promise to cure their child of autism (Metz
et al, 2005).

Although IMTI does not guarantee a "cure "for autism, it is inspired by SRP 's theoretical
philosophy which is based on "love " and "acceptance " and could thereby also be criticized by
professionals for providing false hope to parents of children with autism, as it downplays the
demising reality of their situation. Furthermore relying heavily on anecdotal and case study
reports IMTI currently does not have any scientific evidence to support its effectiveness

According to Alderson (2007) IMTI supersedes ABA success rates, IMTI having a 100% recovery rate (N=5)
(i.e., typical functioning, integrated into regular school system, indistinguishable from peers) in the last 3 years, with
so far no failures.


Irrespective oflMTI's "lack of evidence " and "feel good philosophy" the program did not deter
Jacob and Josh from excelling and surpassing all of my expectations! 16

This past weekend I attended a celebration in honour of both boys' "recovery" from autism.

During this celebration we watched a video of Jacob 's and Josh 's progress in the IMTI
Program. Beginning when the boys were 3 and had just formally been diagnosed with autism,
the footage started with Jacob and Josh displaying odd and irregular behaviour patterns. At the
time, both boys were non-verbal and most of their free time was spent engaging in solitary play
and displaying repetitive ritualistic behaviours.

I watched Josh 's and Jacob 's (now 6) reactions to what was being shown on video, as they sat
on the sofa and watched with the group, the boys would frequently laugh and converse with each
other whenever they caught themselves doing something "funny" (i.e., engaging in odd and
irregular behavioural patterns). Being surrounded by family and friends who had always offered
unconditional support, acceptance and praise, Jacob and Josh did not seem to be embarrassed
by what was being shown on the video. For them, these behaviours were not something to be
ashamed of — as they were not considered a symptom of a psychiatric condition known as
autism, but rather these odd behaviours were seen as random acts of "silliness ".

For the rest of us watching the video (which included family, friends, and IMTI volunteer
therapists), we witnessed two boys who previously displayed characteristics of autism transform
into normal, adaptive and typically developing children.

Chapter 12: Dialogically Encountering "Otherness"
Reflectivity can only be employed when encountering "otherness". Whether this
otherness is through the examination of alternative theoretical frameworks, the unveiling of
subjugated knowledges, or analyzing alternative discourses, this dialogical process is meant to
challenge our current ways of knowing and force us to re-interpret our own personal experiences
with the world (Parker, 2002; Sauko, 2003).

The above theoretical piece of writing attempted to capture the polyvocality (Sauko,
2003) of autism discourse by studying an array of voices (i.e., traditional psychologists and
service providers, people with the autism label, and my own voice as a becoming professional) in

16 Due to the comprehensive multi-treatment approach that encompasses IMTI, currently it is impossible to
determine which components of IMTI effectively contributed to the program's success and which do not.


hopes of giving a fairer account of current discourses related to autism and pathology. By
conducting what Saukko (2003) refers to as a "critical ontology of the self, this paper sought to
examine the discourses that have constituted the author's subjectivity and was meant to illustrate
the limitations of unreflectively accepting the grand meta-narratives that govern our lives. This
paper intended to "deconstruct" 17 dominant discourses surrounding the author's constructions of
autism, attempting to unveil the "lines of force" that impair the author's interpretation of the
phenomenon under investigation. This reflective process allows the author/reader to take a step
back from language and to understand the way language has been organized in such a way that it
places constraints on possible ways of viewing and interacting in the world. In this way, this
poly vocal account of autism discourse shifts dialectically from the author's self, to theory, to the
subject under investigation (i.e., people autism) and back again, in order for the author to become
aware of the personal and social baggage that impairs both the author and reader's ability to
interpret their personal experiences in novel ways. As Sauko (2003) argues, becoming critically
aware of the limits of our own understanding will foster a sensitivity or openness towards
constructing a radically different world.
General Summation of Thesis

Drawing on the theoretical writings of Foucault (1965, 1972, 1980, 2003), Basaglia
(1987) and Deleuze and Guattari (1987) this thesis intended to demonstrate that what we
consider to be "True" in society is closely tied to systems of power which produce and sustain it.
In relation to autism discourse, this thesis attempted to undermine "regimes of truth" surrounding
dominant constructions of autism by unmasking their apparent neutrality. Taking the reader on
the author's personal journey through traditional autism discourses and abnormality, to

17 Deconstruction is used in a similar way as Parker (2002) defines it when he states one is engaging in discourse
when the writer can show how a specific psychological phenomenon is a function of discourse rather than having an
independent reality that can be discovered through empirical research (p. 228).


alternative epistemologies which challenge take-for-granted assumptions of the world, this thesis
attempted to demonstrate that even what we think is commonsensical is, in fact, up for debate.
In most philosophical texts, arguments are constructed in such a way that guarantee a
stable reference point; it is this point of reference that is commonly left unquestioned by the
reader, being seen as the Truth to which all other things are compared (Parker, 1995). Paying
specific attention to language and dominant techniques used in autism practices this thesis
attempted to challenge our habitual tendency to process information according to existing
dichotomies (i.e., normal-abnormal, individual-social, internal-external, relativism-realism,
common sense-theory, etc.) by unveiling the author's dialogical struggle with alternative
epistemologies and how it relates to autism practices.

In fear of perpetuating current stereotypes, prejudices and forms of oppression I so
desperately wish to eradicate, this piece of writing explores the function of taken-for-granted
assumptions that encumber my experiences in the academy. Some key themes emerging
throughout this thesis include:

1 . Dominant constructions of language seek to perpetuate ideas of what can and should

be considered appropriate language. Techniques such as PECS, sign language,
facilitated communication, and augmentative communication systems seek to help the
non-communicative transmit information in a way "the normal" can understand, but in
turn, place constraints on how we go about interacting and understanding those who do
not speak the dominant language.
2. Psychological techniques developed in a benevolent effort to "help" individuals, which

include categorizing, taxonomizing and classifying certain behaviours as abnormal,
may in turn serve to maintain constructions surrounding psychiatric diagnosis as real


phenomena that are in need of remediation. Individuals are pathologized when they
meet specific descriptions found in the DSM-IV, but are further pathologized when
they display "symptoms" of various disorders, but do not neatly fit into one
psychopathological domain (Parker, 1995).
3. What is constructed as abnormal is closely tied to the socio-economic and political

conditions of the time. Historically, individuals who do not or cannot partake in the
productive rhythms of society are labeled deviant and disordered. Capitalism has taken
hold of this unproductive ontology, allowing these once unproductive individuals to
actively participate in capitalistic endeavors, being both consumers of the normalizing
industry and a product of the techniques used.
4. We live in a state of panopticism, under the watchful eye of the other and evaluating

the other in return. This hyper-vigilance to the "condemnatory other", without knowing
when the other is watching, forces us to monitor our own behaviour for fear of being
judged and disciplined accordingly.
Where do we go from here?

In the field of abnormal psychology there is an assumption that the "all knowing"
professional has the objective expertise needed to "help" the client, "empowering" him/her to
escape his/her own subordinate status. The professional often assumes that in this process of
acting upon the other, they are able to separate themselves from their work, imagining his/her
own subject position has little or no impact on their perception of the other and the procedures
and techniques they choose to use (Skott Myhre & Skott Myhre, forthcoming).

When working with children with autism, we (as professionals) often act as though our
own experiences and perceptions do not limit our practices and interpretations of people with


autism's behaviour. Being masked by concepts such as "best practice" and "empirically based
treatments", we often act as though we are operating "outside" the agency, uninfluenced by our
personal histories, our agency's mandate and their underlying philosophies. We assume the role
of the professional is neutral and inherently helpful.

This thesis attempted to show the assumption that the professional is in a position to
"help" or "empower" the other is extremely precarious. Parker (2002) argues that traditional
academic psychology operates as if it is the center, but is ultimately trapped between two absent
centers: failure to reflect on society and failure to reflect on the researcher and how this, in turn,
impacts our interactions in and against psychology. Parker (2007) argues, "there is no place in
psychology or even in discursive psychology for critical work to start" (p. 141), as attempts to
emancipate outsiders from the inside often end up only empowering the psychologists (Parker,
2007). Being concerned with what our discipline is doing to the people it studies, Parker (2002)
relays the fundamental need to "map" psychology by exploring what we do as psychologists, by
drawing on other disciplines such as cultural studies, literary theory, women's studies and social
theory. Psychologists and people working in the social service industry need to take the
arguments in other disciplines seriously. Instead of ignoring the existence of critical frameworks
or shutting down dialogue by providing counter-arguments that merely dispel traditional
concepts firmly grounded in the tradition of empiricism, professionals need to engage
dialogically in these debates.

It is only when we engage in this material that we can focus on the relationship between
what psychology says and what it does; both inside and outside the academic discipline and its
clinical practice. Thus, Parker (2007) calls for the need to "educate the educator" (p. 162), rather


than assuming "revolutionaries" have expertise above and beyond what is possible for ordinary

Chapter 13: Challenging Dichotomies
Despite current attempts of people with the autism label to resist dominant constructions
surrounding traditional autism discourse, many professionals continue to examine autism
through a medical model lens, operating under the assumption that autism is a disorder that is in
need of remediation. Much like Basaglia's (1987) "deconstruction of the asylum" what is first
needed within autism discourse is to undo the logic of dominant autism constructions and
practice (refer back, to five assumptions surrounding dominant autism discourse, see p. 28-29).
Critical disability researchers and collective groups such as the neurodiversity movement and the
autism acceptance project are paving the way, setting up opportunities for new, innovative, and
more dynamic interactions to occur between and beyond disciplines.

These new constructions attempt to over throw the taken-for-granted stable reference
points that are typically left unquestioned by the reader, in order to explore their functions in
society. Instead of masking existing human contradictions by covering up inconsistencies with
terms such as autism, disorder, abnormal, etc., Basaglia (1987) suggests the need to dialogically
confront existing concepts found in the human condition. This does not mean simply privileging
the subordinate dichotomy (i.e., the voices of people with autism) over the dominant (i.e., voices
of professions) as we would essentially run into the same problem, continuing to fix meaning on
one side of the continuum and simply silencing the other. Rather, we need to get at the
conceptual policing that keeps these two sides apart. Furthermore, if we only target one existing
opposition without deconstructing the other surrounding oppositions, the problem is again
reconstructed (Parker, 1995). For example, the above autoethnography attempts to over-throw


the researcher-subject dichotomy, leading the designated role of the researcher to become blurred
to its readers. However, if the author does not deconstruct other oppositions surrounding how the
researcher-subject role was constructed (e.g., professional-patient, normal-abnormal, reason-
unreason, individual-social, pure categories-messy life) then the problem is simply reconstituted.

Furthermore, one must be cautious not to develop an overly idealistic view of the
possibility for change at the individual level. In other words, simply talking differently about
these issues will not lead to radical social change. What we need to do, as many authors currently
(Parker, 1995; 2002; 2007) and historically (Basaglia, 1987; Foucault, 1981) have argued, is to
assess different theoretical positions in and against psychology dialogically and recover notions
that have been excluded from mainstream society. We need to critically explore power and
dominant discourse, taking into account the broader historical and socio-economic conditions of
society, offering ways of tackling these contradictions in order to unveil their confining nature.
As Parker (1995) states this is where we start not finish!

Throughout this piece of writing I have attempted to give a personal account of my
history and experiences with traditional autism discourse and pathology by critically engaging in
alternative epistemologies, challenging myself to think "outside" traditional psychopathological
frameworks related to autism, and to explore the function of these dominant constructions.
However, as was evident throughout the above self-reflections, engaging with discourse may
enable the author/reader to become more aware of the "truth effects" of psychopathology, but
these constructed "truth effects" are still constrained by certain ideas about the conditions of
possibility they produce (Parker, 2002). Many other authors have articulated similar concerns
with self-reflective writing including Said (1978, p. 10) who stated;


No one has ever devised a method for detaching the scholar from the circumstances of
life, from the fact of his involvement (conscious or unconscious) with a class, a set of
beliefs, a social position or from the mere activity of being a member in society.
Another inherent problem with reflective writing and postmodern discourse is that there is a
tendency to view this quest as a "better," more "progressive" alternative to the status quo, being
seen as a space for critical reflection that will bring about opportunities for radical change. But
this also means that when we attempt to be "critical" of the postmodern enterprise we are again
faced with "the modern" as our only reference point (Parker, 2002). Parker (2002) argues that,
despite this apparent limitation of postmodernism, the answer is not just to eradicate this way of
thinking altogether, but to understand how specific forms of postmodern rhetoric open up or
close down a dialogical movement of truth and change. Therefore, it is important to note that the
above analysis of self was not intended to illustrate the author's liberation from discourse, as
there is no extra-discursive reality (Parker, 2002) lying behind that which is spoken. Rather it
was meant to illustrate how specific discourses set out certain conditions of possibility for
actions and experiences, thereby defining current constructions limits and capacities.

Chapter 14: Future Directions of Autism Research
I do not wish to offer concrete recommendations for "how to be self-reflective" or to
develop a "critical practice for dummies" that will enable people working in the autism industry
to be completely conscious of the underlying functions of the techniques and practices used in
the psychological sciences. As soon as recommendations become manualized, they become in
Deleuze and Guattari's (1987) term, a "major language" limiting our capacity to act in
innovative and creative ways.


What can be said, however, is that what we have to say as professionals about people
with autism not neutral and is based on our own limited experiences with the subject in question
and our own personal histories interacting with the world. Thus, it is absolutely crucial to
evaluate ourselves in relation to the "object" we wish to study or interact with. New and
innovative practices are occurring in the social service field and we can turn to these theoretical
practices as the beginning for opening up possibilities for actions and interpretations with people
with autism, rather than limiting their capacities to act in innovative ways.

Ethics of Care. In the work of Foucault and other critical radical theorists (Skott-Myhre
& Skott Myhre, forthcoming), boundaries between the professional and client begin to dissipate
as one begins to see the dynamic dialectical relationship between the care of self and the care of
the other. Foucault contends that care of the se//involves critical reflection and the ability to
break down lines of discourse where one's "stable" identity has been constructed. Yet this task
cannot occur in solitude, as it requires the presence of the other to challenge the boundaries of
the self s thinking. The re-conceptualization of the presence of the other as being vital to
understanding the self fosters a co-alliance with the self and other, the self informing the other,
and the other informing the self in return (Skott-Myhre & Skott Myhre, forthcoming). In our
relations with people with autism, again the essential role they play as co-therapist in our
interactions should not go unnoticed. Our interactions with this group inform us about ourselves
and challenge our thinking about current constructed realities. Emphasizing this creative
exchange of information and self-reflection may help to unpack our need/desire to dominate the

Hearing Voices Network (HVN). Although many professionals still view hearing voices
as a symptom of schizophrenia, the HVN movement initially focused on treating hearing voices


as a discrete symptom on its own, and has currently evolved to show how there is no one correct
way to define and solve a problem and that for some individuals, hearing voices is not a problem
at all! This group has collectively brought professionals, families and clients together to
challenge, accept, and celebrate hearing voices. Some have incorporated mainstream
developmental and psychological theories in an attempt to overthrow dominant theories related
to pathological behaviours. For example, Vygotsky's analysis of cognitive development, which
proceeds from the social to the individual shows that everyone hears voices as a condition of
being able to think in the first place (Parker, 2007). A network such as this seeks to challenge
and incorporate the multiplicity of voices and disciplines, and is a place for the reader to explore
more creative therapeutic relations.

The Son-Rise "Joining" method. What we know about the world limits what we think is
possible to do in it. Parker (2007) contends that to treat behaviour as something that can be
conditioned through reinforcement and punishment procedures is to lose sight of our capacity to
be reflective agents. The joining method developed by Kaufman (1995) is an avenue within the
autism industry that is in need of future exploration. In this instance, instead of reducing
repetitive behaviours in order for the client to look "more normal", the therapist engages in these
repetitive activities as an alternative form of communication and social interaction. These new
interactions, which force the therapists to think outside the condition-response box, again offer
new possibilities for creative interactions.

Autism Network International, ( ). ANI is self-advocacy group
organized for and by people with autism. The ANI founded Autreat; an annual conference
designed to provide a safe "autistic space" focusing on the positive aspects of living with autism
and NOT with the causes, cures or effective techniques used to make autistics look more


"normal." The conference is designed to educate parents and professional about autism
acceptance and provides a space for people with autism to relay their concerns and discomforts
with diagnosis and the specific autism practices being employed in the autism industry.

The Autism Acceptance Project ( ). This is a project designed to
promote alternative constructions of autism, in order to foster understanding and acceptance of
diversity. People involved with this project view autism as a part of life both with challenges
and abilities that deserved to be supported. The TAA project promotes autism advocacy and the
right for people with autism to participate alongside the government being involved in all
agencies and committees, thus making decisions that will help to successfully support and
empower these individuals.
Concluding Remarks:

It is hoped that his piece of writing offers a possibility for resistance, resistance from the
dominant constructions governing our current ways of thinking, that challenges both the reader
and author to move beyond these constructions to explore other possible ways of thinking and
interacting with people with autism.

Taking into account my own personal struggle with autism discourse and pathology I
firmly believe we must not disregard what individuals with autism have to say about their own
"condition". We must make it our responsibility to take seriously alternative ways of being in the
world. We must, as autism professionals, attend conferences such as the AUTREAT and have
people like Amanda Baggs and John Sinclair actively involved in research and policy
development. We must not assume that we know something about others' lived experiences or
that we know their lived experience better than they know it themselves. We must expand our
minds, interrogate our assumptions, and challenge ourselves to think outside our own subject


position. In this way, we are working together, the self informing the other and the other, in turn,
informing the self. In this instance power is not used over the other to inform him/her about how
to live one's life; rather what occurs is a continuous, infinite, dialogical struggle that constantly
challenges all of us to surpass the societal structures that seem to be so firmly in place.


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