Table Of ContentA hermeneutic phenomenological study of the lived
experience of parenting a child with autism
Andrew Cashin
Submitted for the degree of
Doctor of Philosophy
University of Technology Sydney
2003
Certificate of Authorship/Originality
I certify that the work in this thesis has not previously been submitted for a
degree nor has it been submitted as part of requirements for a degree except
as fully acknowledged within the text.
I also certify that the thesis has been written by me. Any help that I have
received in my research work and the preparation of the thesis has been
acknowledged. In addition, I certify that all information sources and literature
used are indicated in the thesis.
Signature of Candidate
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Acknowledgements
To the parents that gave of their time and their selves to participate in the
study.
To Dr Cheryl Waters for embarking with me on another adventure. For taking
once more the roles of guide, companion, and motivator along this road. For
being a true mentor.
To Dr Michael Carey who tolerated my fumbling attempts to grasp concepts
with good humour whilst always encouraging a closer look.
To the NSW Nurses Registration Board for the provision of financial
assistance to undertake the study through a Category Five scholarship.
To my wife and family for their ongoing patience and encouragement.
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Contents
List of Appendices vi
List of Figures vii
Abstract viii
Introduction 1
Literature review 15
The cost of autism 15
What is autism 16
Diagnosis 18
The autism spectrum 22
Epidemiology 26
Cause 28
Treatment 33
Impaired communication 34
Social skills impairment 40
Restricted, repetitive and stereotyped interests and behaviours 41
Impact of parenting a child with a disability 45
Impact of parenting a child with autism 50
Parents as part of a family 55
Theoretical Perspective 57
Methodology 71
Methods 80
Procedures 81
Study participants 85
Ethical considerations 87
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Results 93
Initial analysis 93
Extended analysis after first three focus groups 111
Focus Group four 122
Summation 128
Discussion 135
Appendices 167
References 203
v
List of appendices
1 Consent form
2 Focus group data sheet
3 Focus group one handout
4 Focus group two handout
5 Focus group three handout
6 Focus group four handout
vi
List of Figures
1 Progressive analysis provided to focus group one
2 Progressive analysis provided to focus group two
3 Progressive analysis provided to focus group three
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Abstract
It was identified that there was little published research into the lived
experience of parenting a child with autism that utilised a qualitative approach.
There was a paucity of material in the literature, beyond single parent
accounts, for a nurse to turn to develop a beginning understanding of the
experience. There was also little for a parent to compare their own experience
with. This study of the lived experience of parenting a child with autism
provides an exploration of the experience within the framework of a
hermeneutic phenomenological approach. Initially nine parents were
interviewed and the resulting transcripts analysed. This analysis was taken to
four focus groups to allow the parent’s voice to remain active in the refinement
of the analysis. The parents reported a strong resonance with the analysis
and the discussion fell silent. The experience identified was not that of a
series of activities but profound changes to the self of the parent. This is
considered in the discussion in the light of the existential challenge to the
parent’s being posed by the demands of parenting a child with autism. Chaos
theory and its mathematical applications are considered as a potentially
fruitful way to pick up the conversational relation with the question of, “what is
the lived experience of parenting a child with autism”?
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Introduction
The aim of this text is to provide one side of a dialogue with the reader. By
virtue of the nature of text the openness of a genuine conversation cannot be
obtained but the aim is to provoke the reader to question further in the direction
pointed to by the text. “Genuine questioning always involves a laying open and
holding open of possibilities that suspend the presumed finality of both the text’s
and the reader’s current opinions” (Linge, 1976:xxi). It is not hoped that the
worldview of the author will become that of the reader, but that the reader will
make their own the question which motivated the text. The question of - “what
is the lived experience of parenting a child with autism”?
Two out of every five hundred parents will face the prospect of being the
biological parent of a child with autism (Autism Association of NSW, 2001a;
Committee on Children with Disabilities, 2001). Three DSMIV diagnoses
represent the autism spectrum. The three diagnoses that form the spectrum,
and which are referred to generally as autism in this study include, Autistic
Disorder, Asperger’s Disorder and Pervasive Developmental Disorder not
otherwise specified (Atypical Autism). There is little in the literature that goes
beyond the account of single families that allows someone who is not in the
position of being the parent of a child with autism to understand what the
experience of parenting a child with autism is like. There is correspondingly little
for a parent with a child with autism in the literature to compare their experience
to. What is the lived experience of parenting a child with autism? This is the
question that will be posed again and again by the text as the process of an
attempt to understand this experience unfolds. The understanding reached will
be, by the nature of any understanding, partial and incomplete as it is situated
historically and in the facticity of the participants, the author and reader.
Hermeneutic phenomenology is used in an attempt to form a bridge that allows
understanding, between the reader’s life world and that of the parents of
children with autism. “It seems, rather, to be generally characteristic of the
emergence of the hermeneutical problem that something distant has to be
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brought close, a certain strangeness overcome, a bridge built” (Gadamer,
1967/1976:22).
The utility of an understanding of what the lived experience of parenting a child
with autism is arises in two areas. From a nursing standpoint a beginning
appreciation of the experience allows a point of departure from which
questioning may begin, after which, closer approximations to an individual
parent’s experience are made in the hope to build empathy and launch into a
therapeutic interaction. From a parent’s standpoint the understanding may
provide a point of reference to what other parents experience. To answer the
relativistic question posed by many, in what is a less than typical parenting
situation of, “is this normal”? Thus the motivation to pose the question of, “what
is the lived experience of parenting a child with autism”? “The motivational
background of a question first opens up the realm out of which an answer can
be brought and given” (Gadamer, 1966/1976a:67).
Locating the question in the process is easy compared with the demand present
in our time of locating the researcher. A process whereby the qualitative
researcher is called upon, as a measure to increase the trustworthiness and
integrity of the research, to consider the influence of inter subjective factors
upon the collection and analysis of data. “Reflexivity where researchers engage
in explicit, self aware analysis of their own role offers one tool for such
evaluation” (Finlay, 2002:531).
All research irrespective of methodology involves a creative act of mind
(Lyotard, 1991). Science is in effect a social activity just as much as it is a
rationally regulated discipline (Johnson, M., 1999).
In reality the hypothesis of constancy the empiricist claims to find through
his observations is constructed by the mind, on the basis of possibly a
single observation. We cannot induce a law from a large number of
cases, this is an idealising function, fabricated by the physicist which
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