THE PARENT PROGRAMME: A PSYCHO-

EDUCATIONAL INTERVENTION FOR

PARENTS OF CHILDREN WITH AUTISM

MICHAEL MCCREADIE

Submitted in partial fulfilment for the award of

doctorate in health psychology
QUEEN MARGARET UNIVERSITY
2013

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 Contents

Acknowledgements……………………………………………………… 7
Abstract………………………………………………………………….. 8
Chapter 1: Introduction and Research Overview…………………….. 10
1.1 Background………………………………………………………….. 10
1.1.1 Autism……………………………………………………………... 10
1.1.2 Stress in Parents…………………………………………………… 11
1.1.3 Behavioural Family Interventions ………………………………... 12
1.2 Research Overview …………………………………………………. 12
1.2.1 Study Aims ……………………………………………………….. 15
1.3 Thesis Overview ……………………………………………… 18

Chapter 2: Autism …………………………………………………….. 20

2.1 Autism ……………………………………………………………… 20
2.2 Parental Stress ……………………………………………………… 23
2.2.1 Systemic Issues …………………………………………………… 23
2.2.2 Parental Stress, behaviour and Sibling Relationships ……………. 24

Chapter 3: Coping …………………………………………………….. 27

3.1 Life satisfaction in Parents …………………………………………. 27
3.2 The transactional model of stress and coping ………………………. 28
3.2.1 The role of coping ………………………………………………… 28
3.2.2 The role of appraisal ……………………………………………… 29
3.2.3 Coping and appraisal within dynamic context ……………………. 30
3.2.4 Controllability …………………………………………………….. 31
3.2.5 Adapting coping style …………………………………………….. 35
3.2.6 Parental appraisal and understanding the child’s autism …………. 33
3.2.7 Centrality …………………………………………………………. 35
3.2.8 Goodness-of-fit …………………………………………………… 36
3.3 Coping within the context of the family ……………………………. 38

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Chapter 4: Parent-Mediated Interventions ………………………….. 39
4.1 Intervention in Autism ……………………………………………… 39
4.2 Parent-Mediated Intervention ………………………………………. 40
4.3 Behavioural Approaches ……………………………………………. 41
4.3.1 Discrete Trial Training …………………………………………… 41
4.3.2 Pivotal Response Training ……………………………………….. 42
4.3.3 Problems with ABA Approaches ………………………………… 44
4.3.4 Parents as Therapists ……………………………………………… 45
4.3.5 Parental Stress and the ABA Approaches …………………………. 46
4.4 Stepping Stones Triple P and Triple P Programmes ……………….. 47
4.4.1 Problems with SSTP ……………………………………………… 48
4.5 Floortime ……………………………………………………………. 50
4.5.1 Problems with Floortime …………………………………………. 51
4.6 Son-Rise ……………………………………………………………. 52
4.6.1 Problems with Son-Rise ………………………………………….. 53
4.7 TEACCH (Treatment and Education of Autistic and related
Communication-handicapped Children) ………………………………... 54
4.7.1 Mechanisms of Structured Teaching ……………………………... 55
4.7.2 Parent as Therapist ………………………………………………... 55
4.7.3 Problems with TEACCH …………………………………………. 56
4.8 Chapter Summary …………………………………………………... 56

Chapter 5: Potential Components of a Parent Mediated Approach .. 58

5.1 The Value of Parent-Mediated Approaches ………………………... 58
5.2 A Psycho-Educated Approach ……………………………………… 59
5.3 Parental Understanding as a Component of Intervention …………... 60
5.4 Positive Programming ……………………………………………… 61
5.4.1 PP and its use with parents ……………………………………….. 62
5.5 Motivational Interviewing ………………………………………….. 63
5.5.1 MI Technologies and strategies …………………………………... 63
5.5.2 MI Parent child interaction ……………………………………….. 65

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Chapter 6: Methodology ……………………………………………… 67
6.1 Rationale ……………………………………………………………. 67
6.2 Participants …………………………………………………………. 67
6.2.1 Recruitment ………………………………………………………. 67
6.2.2 Inclusion and Exclusion Criteria …………………………………. 68
6.2.3 Participant Characteristics ………………………………………... 69
6.2.4 Child Characteristics ……………………………………………… 71
6.3 Procedure …………………………………………………………… 72
6.3.1 Ethical Issues ……………………………………………………... 72
6.3.2 Development of Workshops ……………………………………… 72
6.3.3 Style of Workshop Delivery ……………………………………… 77
6.3.4 Workshop Environment ………………………………………….. 79
6.3.5 Development of Manuals …………………………………………. 79
6.3.6 Family Facilitators ………………………………………………... 81
6.3.7 Family Facilitator Induction and Supervision ……………………. 82
6.3.8 Timescales for the Development, Delivery and Evaluation of the
Parent Programme ……………………………………………………… 85
6.4 Outcome Measures …………………………………………………. 85
6.4.1 The Parenting Stress Index ……………………………………….. 85
6.4.2 The Ways of Coping scale ………………………………………... 86
6.4.3 Completion of Questionnaires ……………………………………. 87
6.5 Data Analyses ………………………………………………………. 88

Chapter 7: Results …………………………………………………….. 89

7.1 Assessing Normality and Post hoc tests ……………………………. 90
7.2 Parenting Stress Index Results ……………………………………… 90
7.2.1 Hypothesis 1 ……………………………………………………… 90
7.2.2 Hypothesis 2 ……………………………………………………… 92
7.3 Hypothesis 3 Ways of Coping Results ……………………………... 94
7.3.1 Accepting responsibility ………………………………………….. 95
7.3.2 Confrontive coping ……………………………………………….. 96

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7.3.3 Self controlling …………………………………………………… 97
7.3.4 Positive Re-appraisal …………………………………………….. 98
7.4 PSI Sub Domains ………………………………………………… 99
7.5 Clinical Changes …………………………………………………. 999
7.5.1. Correlations……………………………………………………….. 100
7.6. Central Findings………………………………………………….. 101

Chapter 8: Results and Conclusion …………………………………... 103

8.1 Adaptability ………………………………………………………… 104
8.2 Competence ………………………………………………………… 106
8.3 Methodology Critique ………………………………………………. 107
8.4 Conclusion ………………………………………………………….. 109

References ……………………………………………………………… 112

Appendices
Appendix 1. Parents recruitment letter …………………………………. 133
Appendix 2. Information sheet …………………………………………. 134
Appendix 3. Consent form ……………………………………………… 136
Appendix 4. Parent un-successful notification …………………………. 137
Appendix 5. Workshop 1 PPT ………………………………………….. 138
Appendix 6. Quiz ……………………………………………………….. 139
Appendix 7. Workshop 2 PPT …………………………………………... 140
Appendix 8. Manuals …………………………………………………… 141
Appendix 9. Descriptive Statistics PSI Sub-Domains ………………… 142
Appendix 10. Pearson and Spearman Correlations…………………….. 143
Appendix 11. Parent Comments……………………………………….. 154
Appendix 12. Abbreviations ………….………………………………... 155

Tables
Table 1. Number of Respondents, and Numbers Selected ……………… 68
Table 2.Marital Status of Participants …………………………………... 70
Table 3.Participating with Partner ………………………………………. 70

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Table 4. Child Age ………………………………………………………. 71
Table 5. WC-R Scales, Items and Reliability Coefficients ……………… 87

Table 6. Descriptive Statistics for Parental Stress Associated with Child

Characteristics …………………………………………………………... 91
Table 7. Descriptive Statistics for Parental Stress Associated with
Parental Characteristics …………………………………………………. 92
Table 8. Descriptive Statistics for Accepting Responsibility …………… 95
Table 9. Descriptive Statistics for Confrontive Coping ………………… 96
Table 10. Descriptive Statistics for Self-Controlling …………………… 97
Table 11. Descriptive Statistics for Positive Re-appraisal ………………. 98

Figures
Figure 1. Overall Chronology of Study ………………………………… 15
Figure 2. The Transactional Model of Stress and Coping ……………… 30
Figure 3. The Triple P Model of Graded Reach and Intensity of Parenting
and Family Support Services ………………………………... 48
Figure 4. Rollnick’s Ruler ……………………………………………… 64

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 Acknowledgements

I would like to express my sincere thanks and gratitude to my supervisors, Dr

Vivienne Chisholm for supporting me through this and Dr Karen Goodall for her
critical eye and steering me in the right direction. I am also grateful to Dr Joye
Willock who was inspirational in the development of the intervention.

I am sincerely grateful to all the parents who participated in the study, and
whom I have had the pleasure of working with as their belief, honesty and sense of
humour has been an inspiration.

I am also grateful to the National Autistic Society and the Scottish

Government for their support in making the study possible, and gratitude to Brian
and Rena for reminding me to finish.

This thesis is dedicated to Layla and Ennis who’s support was always
unwavering.

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 Abstract

Background
Having a child with autism places significant demands on parents. Few
interventions address parental understanding of the meaning behind child behaviour,
and the relationship this has with parental stress. Parent-mediated interventions focus
on behaviour exhibited by the child and ignore parental stress. This study assesses
the impact of a psycho-educational intervention, which assists parents to derive
meaning from their child’s behaviour.

Aims
The overall aim was to investigate if an intervention targeted exclusively at
parents would:

• Reduce parent stress associated with Child Characteristics

• Reduce parent stress associated with Parenting Characteristics
• Facilitate changes in parental coping styles

Methods
A quantitative approach was adopted to evaluate the impact of the
intervention. Measures of parental stress (Parenting Stress Index) and parental
coping (Ways of Coping, Revised) were taken at three time intervals; prior to, at a
mid-point, and at the end of the intervention.

Results
Questionnaires were completed by 71 parents and the results were computed
using a repeated measures analysis of variance (ANOVA). There was a statistically
significant change within the parent and child domains of the Parenting Stress Index
(p<. 0.0005), with parents showing less stress associated with interpretations of their
child’s behaviour, and significant changes in their use of problem-focussed coping.

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Conclusion
Parent-mediated interventions that target parent characteristics associated
with child behaviour, are inexpensive and have significant benefit. However, we
require further research to explore the relationship between stress and coping
variables in parents of children with autism to inform the future direction of
intervention.

Keywords: Parents, Autism, Stress, Coping, Psycho-Educational Intervention

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CHAPTER ONE
INTRODUCTION AND RESEARCH OVERVIEW
This chapter aims to provide a general introduction to the key premises
involved in this study. It contains a broad overview of autism, stress and coping in
parents, and behavioural family interventions. An outline of the entire dissertation is
also provided including the research aims.

1.1 Background
1.1.1 Autism
Autism is a neuro-developmental disorder that affects approximately 116 per
10, 000 individuals, within the general population (Baird, Siminoff, Pickles,
Chandler, Loucas, and Meldrum, 2006). As a pervasive, life long developmental
disability autism has come to be clinically recognised through core impairments in
socialisation, communication and imagination, a picture of the disability which has
commonly been referred to as Wing’s triad of impairment (Rutter and Schopler
1987), the term being derived from an epidemiological study by Wing and Gould
(1979) in the Camberwell area of London U.K.
When we look across the population of those individuals affected by autism
we observe a spectrum of disorders, with variation of the condition from person to
person, and a large group showing signs of associated learning disability, a group
frequently referred to as ‘classically autistic’ or having Kanner type autism (Kanner,
1943). Evidence of associated learning disability within the autistic population has
been found in numerous studies (Wing, 1988; Frith, 1989; Happe, 1994).
Steffenburg (1991) observed that in a clinic sample of 52 children, 35 of whom met
the World Health Organisation ICD-10 (International Classification of Diseases,
Version 10) criteria of having an Autism Spectrum Disorder (ASD), and 17 who
exhibited features of an Autism Spectrum Disorder (ASD), 90% of the sample
exhibited some form of neurological dysfunction, in addition to “autistic features”.
In terms of cognitive ability, a significant number of individuals on the
autism spectrum are described as being more able individuals, commonly referred to
as having Asperger Syndrome (Asperger, 1991). In this sub group the main clinical
features include: lack of empathy, naïve and one-sided interaction, impaired or

10
absence of ability to form friendships, pedantic repetitive speech, poor non- verbal
communication, intense absorption in certain subjects and clumsy and ill-coordinated
movements (Burgoine and Wing, 1983). While IQ levels and mental age vary
considerably across the spectrum, all individuals classified as having autism will
have difficulty in social interaction, communication and imagination often with
repetitive and stereotyped behaviour, and sensory/ perceptual abnormalities.
There has been considerable debate as to the terminology used to describe the
umbrella term autism, with some authors referring to Autism Spectrum Disorders,
others referring to the more socially valid term Autism Spectrum Condition and more
recently a return to the term autism to cover the range of behaviours observed
(Baron-Cohen, 2008). The scope of this thesis does not allow for an in-depth
discussion as to the merits of terminology and so the term autism will be used
throughout to cover the whole of the autism spectrum including; Asperger
Syndrome, Kanner Type, Infantile and High Functioning Autism.

1.1.2 Stress in Parents

Being a carer for a child with a disability is a role that extends the course of
the child’s lifespan (Raina, et al., 2004), with a strong evidence base to suggest that
bringing up a child with a disability has an association with increased parental stress
(Hauser-Cram, Warfield, Shonkoff and Krauss, 2001). Moreover, how families cope
with the stresses and demands of managing a child with a disability are very much
dependent on family belief systems which influence adaptation and resilience
(McCubbin and McCubbin 1993; Hawley and DeHaan 1996; Walsh1998).
The trajectory of development of children with autism does not follow a
uniform path (Lord, et al., 2006) and thus, the changing and difficult to predict
patterns of behaviour exhibited by this group of children represent a constant source
of stress on the family unit. The extremely antisocial, disruptive behaviours
associated with autism, such as self-injurious behaviour, tantrum and
obsessive/compulsive behaviours, in themselves preclude a normal family life (Gray
and Holden, 1992) and are risk factors for parental mental health (Emerson, 2003).

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1.1.3 Behavioural Family Interventions
Despite the well understood challenges that parents of children with autism
face, current interventions for autism are primarily targeted towards children with the
disorder and the specific impairments involved. Home based interventions are
generally targeted at younger children and involve training parents to deliver a
programme with little consideration of the daily parenting demands involved in
parenting their child. In their Cochrane Collaboration Review, Parent Mediated
Early Intervention for Young Children with Autism Spectrum Disorder, Diggle and
McConachie (2009) found that while some parent mediated interventions assessed
the impact of parental knowledge, there was little attention paid to the stress
experienced by parents or the emotional impact of delivering a home based
intervention.

1.2 Research Overview

This study assesses the impact of a psycho-educational intervention for
parents of children with autism. The intervention was developed based on the
author’s experience of delivering parent workshops while employed by the National
Autistic Society, and review of the literature on parent-mediated interventions
(Dawson, and Osterling, 1997; Prizant and Wetherby, 1998).
Psycho-education was first described by Anderson, Gerard, Hogarty and
Reiss (1980) in their work with people with schizophrenia and their family members.
The approach the authors described consisted of briefing patients about their illness,
problem solving training, communication training, and self-assertiveness training.
However, unlike other forms of intervention that solely targeted the person affected
by schizophrenia, the programme included family members and emphasised their
role in understanding the disease and it’s impact on relationships. Since this original
description a number of other studies have highlighted the value of psycho-
educational approaches for families of people affected by schizophrenia (Pitschel-
Walz, Leucht, Bäuml, Kissling and Engel, 2001; Pilling, Bebbington and Kuipers, et
al 2002; Penn and Mueser, 2004). German speaking researchers have shown
particular interest in the approach and the formation of a working group to distill the
central concepts involved in psycho-education formulated the following definition:

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 “The term psychoeducation comprises systemic, didactic-psychotherapeutic
interventions, which are adequate for informing patients and their relatives about the
illness and its treatment, facilitating both an understanding and personally
responsible handling of the illness and supporting those afflicted in coping with the
disorder.”

(Bäuml and Pitschel-Walz, 2003)

This definition highlights the importance of shared knowledge and

understanding of the condition schizophrenia between the person directly affected
and family members involved in the person’s care. Moreover, it introduces the
concept that coping with the condition is shared and should shape the nature of
psychotherapeutic intervention.
While psycho-educational approaches are discussed within the literature
pertaining to schizophrenia, they are generally absent from the literature
concerned with families supporting children with other non-curable neuro-
developmental conditions such as autism. In contrast, many home based approaches
for children with autism focus on a treatment paradigm. Such approaches target
specific behaviours presented by the child for elimination and/or reduction, and
parents are trained in the delivery of a behavioural programme to the child (Mesibov,
Schopler, and Hearsey, 1994; Schreibman and Koegel, 1996; Connor, 1998). A
more detailed discussion of some of these approaches is provided in chapter 4. A key
difference between home based interventions which seek to treat autism and the
psycho-educational approach evaluated in this thesis is that rather than try to
eradicate behaviours presented by the child the psycho-educational approach seeks to
develop parental understanding of the child’s behaviour and frame that within the
child’s own expression. In doing so, the psycho-educational approach aims to assist
parents in ascribing meaning to their child’s behaviour, enhance interaction and
ultimately reduce parental stress.

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 Rather than focus extensively on objective changes in child behaviour as is
the focus of most established studies of parent-mediated intervention, the study
targeted parental appraisal of their child’s behaviour. This was achieved by
providing 2 parent workshops with accompanying manuals and 21 hours of support
with a facilitator who assisted parents in identifying those behaviours which could be
supported given parental and family resources. Facilitators did not provide direct
instruction on how to support child behaviour, but instead used Motivational
Interviewing (MI) techniques (Miller and Rollnick, 2002) as a means of exploring
with parents their feelings towards addressing problem behaviours in their child. MI
differs from externally-driven methods for motivating change as it does not impose
change but rather supports it in a manner consistent with the parents’ own values and
concerns.

Figure 1 provides a broad illustrative overview of the chronology of the

study.

14
 Study design and Development of workshop and
award of Scottish manual one, and recruitment
Government Grant and training of
Family Facilitators

Parents attend
workshop 1 in own Parents of school aged
area. Measures of children with autism
stress and coping identified from three
taken prior to Scottish Local Authorities
workshop. Given as potential participants
Manual 1 at end

Participants attend workshop

2 in own area. Measures of
Participants have stress and coping taken prior
first meetings with to workshop. Given Manual 2
family facilitators at end.

Final measures of
participant stress and Additional meetings with
coping taken. family facilitators take
place

Figure 1. Overall Chronology of Study

1.2.1 Study Aims

Parent mediated interventions for children with autism generally focus on
training parents to implement a prescribed programme to alter their child’s behaviour
and/or teach the child a new skill. Parents participating in such interventions are
required to adopt the role of therapist regardless of what new burdens this places on
them. However, studies that have evaluated such interventions have identified a

15
range of methodological issues, raising questions as to their ability to make
meaningful change in families of children with autism.
By contrast an approach, which is predominantly psycho-educational aims to
equip parents with an understanding of the meaning behind their child’s behaviour.
Psycho-education refers to the education given to people who are living with
emotional disturbances (Rouget and Aubrey, 2007). Psycho-educational
interventions promote a humanistic approach to changing behavioural patterns,
values, interpretation of events, and the life outlook of such individuals. The
rationale behind a psycho-educational approach is that with self-knowledge of own
strengths, community resources, and coping skills, the individual is better equipped
to deal with the problem and to contribute to his or her own emotional well-being. As
an approach, psycho-education can trace it’s roots to philanthropists such as Johann
Heinrich Pestalozzi and Samuel Gridley Howe who used educative methods for
providing therapeutic service and care to physically and psychologically
compromised people. A more comprehensive discussion of this approach will be
provided in chapter 5.
Unlike prescriptive interventions, which teach parents to deliver a “treatment
programme” to their child, this intervention exclusively focuses on parental
interpretation of their child’s behaviour and the meaning derived from this. While
many parent-mediated interventions are concerned with measuring change in child
behaviour, this study deliberately avoided such objective measures concerning itself
exclusively with parental experience of stress associated with caring for a child with
autism. This is a significant point, as those involved in implementing the
intervention only met any of the children with autism by chance when visiting the
family home to meet with the parents participating in the study, rather than by
intention.
In common with psycho-educational approaches adopted in studies of
schizophrenia, the approach evaluated within this thesis recognised the importance in
developing parental understanding of the underlying cognitive differences
experienced by their child. To date theories that autism arises out of impairment in
cognition associated with either, theory of mind, executive function, or central
coherence have dominated much of the literature (Baron-Cohen, 2004). However,

16
there are other valuable developmental theories of autism that were omitted from the
approach due to the limited availability of resource. For example, the developmental
studies of Marian Sigman and her colleagues (Sigman and Ungerer, 1984;Ungerer
and Sigman, 1981) highlighted that of the multiple areas of sensorimotor
development that Piaget delineated, children with autism showed syndrome-specific
impairments in only two: imitation and play. Moreover, Pennington and Ozonoff
(1991) assert that more than any other neuropsychological area of impairment in
autism, imitation appears to meet the four criteria for a primary psychological deficit
in autism: universality, specificity, precedence, and persistence. Therefore, while the
psycho educational approach described in this thesis acknowledges the importance of
other developmental theories in helping parents understand and relate to their child,
the time limitations placed on the number of sessions with parents restricted the
approach from extending beyond an understanding of the most prolific theories of
cognitive difference.
While the approach adopted aims to reduce stress in parents it also recognises
the value of coping and observes changes in coping styles used by parents as they
interact with the intervention. Coping is considered to be a cognitive process,
however, it is problematic in that cognitive coping and cognitive appraisal can be
confounded. Appraising a situation, as a threat, may trigger coping, i.e., further
thoughts that imply a reappraisal of the same situation as being more or less
threatening. In such cases it is difficult to make a distinction between appraisal and
coping. Moreover, other conceptual problems arise when coping is to be separated
from coping resources (e.g., hardiness, dispositional optimism, self-efficacy, sense of
coherence, social support, etc.). Resources can be personal, social or other
antecedents of appraisals and coping. While in reality coping resources and actual
coping may be difficult to disentangle, it is important to make this distinction in
theory and research. Resources are relatively static, whereas coping is a process that
depends on these resources. This study utilises the theoretical framework of Folkman
and Lazarus (1980) as it recognises coping as a dynamic process. However, there are
other theoretical frameworks such as that by Billings and Moos (1981)which groups
items within a measure according to method and function of coping. While it would
be helpful to discuss the merits of the different approaches to coping and the

17
unresolved issues of measurement, it is the concept of appraisal (Lazarus, 1991) and
it’s role in the stressful encounter which makes it most attractive for investigating
parental stress relative to understanding the child’s behaviour.

1.3 Thesis Overview

Chapter 1 The current chapter offers a backdrop to the study as well as providing an
introduction to the key variables being explored. The chapter offers an initial
rationale, for the approach taken in the intervention design and identifies the
hypotheses the study aims to address.

Chapter 2 Provides a review of the literature relating to autism and describes the
disability in terms of symptomology and the nature of behaviours exhibited by
individuals on the autism spectrum. The chapter also highlights the impact that the
behaviours exhibited by children with autism has on families paying particular
attention to the sources of stress experienced by parents.

Chapter 3 Discusses the role of coping in parents of children with autism. The
chapter explores the transactional model of stress and coping. The chapter makes
detailed discussion of the role of appraisal and examines how the model may
influence the development of intervention for families of children with autism.

Chapter 4 Provides an overview of common parent-mediated interventions for

children with autism. The chapter discusses both the merits and limitations of
interventions and examines the gaps in the evidence base.

Chapter 5 Discusses the value of parent mediated interventions and what alternative
theories may be incorporated into their design. The chapter discusses how Positive

18
Behaviour Programming and Motivational Interviewing may offer a more realistic
option as components of parent mediated intervention.

Chapter 6 Describes the method employed in conducting the study. The chapter
describes the development and content of the intervention, participant recruitment,
procedures, measures, and data analyses used in the study.

Chapter 7 Presents the findings from the study. Data analysis methods are described
and the results are presented.

Chapter 8 Consists of discussion and conclusion sections for the study. The chapter
includes a discussion and interpretation of findings of the research and highlights the
clinical implications, limitations of the study, and future research directions.

References contain a reference list of all the citations in this study.

Appendix section includes attachments of relevant documents highlighted in the
thesis.

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Chapter Two
Autism
2.1 Autism
There is general agreement across the literature that autism is characterised
by behavioural patterns that demonstrate some form of qualitative social impairment
observed from the very early stages of development (Wing and Potter, 2002). Such
patterns of behaviour can be both complex and challenging and are generally viewed
as either a result of the biological basis of the disorder (Gillberg and Coleman, 2000)
or as a stress response to environmental triggers (O’Neil and Jones, 1997).
Moreover, given that at a clinical level autism has been described as a social
impairment (Shah, 1986), parents and primary carers of individuals are frequently
confronted with bewildering, challenging and paradoxical behaviour which do not
meet the expectations of societal behavioural norms (Reese, Richman, Belmont and
Morse, 2005).
There is significant debate as to the primary cognitive impairments in autism,
with the literature generally being divided into two camps. The first advocating that
autism arises out of a form of mind blindness or problems mentalising (the ability to
understand that others have a mental life different from our own) (Baron-Cohen,
1995), within this model it is thought that the behaviours observed in children with
autism evolve from an impaired ‘‘empathising’’ system. The term empathisising
encompasses a range of other terms: ‘‘theory of mind’’, ‘‘mind reading’’,
‘‘empathy”, and taking the ‘‘intentional stance’’ (Dennett, 1987). As a construct
empathy involves two major elements: (1) the ability to attribute mental states to
oneself and others, as a natural way to make sense of agents, and (2) having an
emotional reaction that is appropriate to the other person’s mental state (Baron-
Cohen, 1994). Proponents of this theoretical model propose that many of the
challenging and complex behaviours exhibited by children with autism arise from
this primary impairment in mentalising. In contrast, other researchers propose that
impairment in mentalising is secondary to a primary impairment in executive
processes (Russell, 1997). The executive dysfunction theory of autism does not deny
the existence of impaired mentalising ability in people with autism, but rather

20
contends that this arises out of differences in attention, working memory, planning
behaviour and regulating and inhibiting impulse control. Proponents of the executive
dysfunction theory advocate that early social- communication disturbance in autism
are exemplified by a robust developmental failure in joint attention (Mundy and
Sigman, 1989). Joint attention skills refer to the capacity of individuals to coordinate
attention with a social partner in relation to some object or event.
While both the mentalising and executive dysfunction theories of autism have
different aetiological explanations for the observed behaviours, both agree that the
cognitive impairment experienced by individuals across the spectrum gives rise to
differences in the interpretation and experience of sensory/perceptual information
(Hirstein, Iversen and Ramachandran, 2001; Townsend, Courchesne, and Egaas,
1996). Moreover, since the earliest descriptions there has been a general consensus
in the literature that people with autism have different perceptual experiences
(Kanner, 1943) and that the fluid unification of objects, action and context
experienced in typically developing individuals is not as coherent for adults and
children on the autism spectrum (Tsermentseli, O’Brien, and Spencer, 2008).
In typical development the organisation and experience of sensory
information is central to how we respond to our environment and to our regulation of
emotion and behaviour. The ability to selectively attend to identified stimuli and
integrate multiple sources of sensory input informs our perception of the world
around us and helps us develop a coherent picture of events. Under normal
circumstances, multisensory stimulation leads to enhanced perception and facilitated
responses to objects in our environment (Bolognini, Frassinetti, Serino, and La`
davas, 2005; Stein, London, Wilkinson, and Price, 1996; Sumby and Pollack, 1954).
As such, there exists a plethora of multisensory interactions in the processing of
stimulus location, identity, and timing (Calvert, Brammer, and Iversen, 1998; Calvert
and Lewis, 2004).
The autobiographical accounts of people with autism, suggests that the
subjective sensory-perceptual experiences they have are often different from
typically developing individuals. Generally, reports refer to difficulties in the
reception (input) and processing (making sense) of sensory information (Cesaroni
and Garber, 1991). Personal accounts include examples from vision, sound, taste,

21
smell, proprioception, kinesthetic stimulation of sensory distortions, sensory tune-
out, synesthesia (e.g., a sound provoking sensations of colour or smell), difficulties
processing information from more than one modality concurrently, and difficulties
identifying the source modality of sensory input (Attwood, 1998; Grandin, 1988,
2000; Williams, 1996).
Children with autism process sensory information in a way that seems to
differ from others (Brock, Brown, and Boucher, 2002; Frith, 1989; Happe ́, 2005;
Hermelin and O’Connor, 1970; Hutt, Hutt, Lee, and Ounsted, 1964; Just,
Cherkassky, and Keller, 2004; Mottron, Dawson, Soulieres, Hubert, and Burack,
2005). Moreover, they are more likely to present as having unusually intense
attention to or avoidance of sensory stimuli from all the modalities (Grandin, 1992;
Cesaroni and Garber, 1991; O’Neill and Jones, 1997; Williams, 1994). Atypical
responses of individuals with autism are also in part a function of hypo and/or hyper-
arousal (Hutt et al., 1964) and unusual reactions to sensory input (Kootz, Marinelli,
and Cohen, 1982; Ornitz, 1974; Ornitz, Guthrie, and Farley, 1977). In addition, there
is a significant body of evidence to suggest that individuals with autism experience
atypical attentional, physiological, and neurological responses to sensory tasks
(Hermelin and O’Connor, 1970; Hutt et al., 1964; Ornitz, 1974). The evidence from
both personal accounts and empirical studies suggests that sensory atypicalities are
core symptoms in children with autism (Happe ́, 2005; Mottron and Burack, 2001;
Just et al., 2004), and that many of the disruptive behaviours we observe are in part a
result of these sensory experiences. Findings from studies that have explored the
role of poor sensory integration in challenging behaviour indicate that parents are
often confronted with behaviour which is not only challenging but as in the case of
self injurious behaviour arising from poor integration, potentially dangerous
(McIntosh, Miller, Shyu and Hager, 1999). However, few if any parent-mediated
interventions take consideration of the phenomenological difference experienced by
children with autism of day-to-day sensory inputs and their resulting impact on
behaviour.
Whilst, behaviours presented by those on the autistic spectrum can be found
within the general population and within individuals who experience other disorders
and disabilities, it is the severity and frequency of specific enduring patterns of

22
behaviour that is indicative of autism spectrum disorders (Posserud, Lundervold and
Gillberg, 2006). In addition to self injurious behaviour arising from poor sensory
integration individuals can present with: violent behaviour, inappropriate sexualised
behaviour, tantrum, problems with communication, property destruction, difficulties
in relating to others, making inappropriate verbal comments, difficulties with sharing
space, turn taking, problems with impulse control and strange and awkward body
movements (Mc Clintock, Hall, and Oliver 2003; Baghdadli, Pascal,Grisi and
Aussilloux, 2003; Chadwick, 2000). Such behaviours, while being socially
inappropriate also cause extreme distress not only to the individual who is presenting
them, but also to parents, siblings and professionals involved in the child’s care and
education.
The lack in understanding of social norms and cues central to autism has
significant impact on how that individual relates to others and can place significant
strain upon relationships (Wing and Gould, 1979). In addition, given that 10-20% of
children with autism and learning disability exhibit behaviour such as self-harm and
aggression with a likelihood of severity increasing into adolescence (Jacobson 1982;
Kiernan and Kiernan 1994), the quality and type of interactions which parents have
with their child may be significantly restricted and contingent on the parents ability
to cope with the demands placed on them.

2.2 Parental Stress

2.2.1 Systemic Issues
The sources of stress on parents are varied and multiple, and include having
to relate and interact with statutory and support agencies, deal with economic
pressures, maintain the welfare of siblings, manage concerning behaviours presented
by their child with autism, ensure the safety for their child with autism, as well as the
day-to-day hassles of ordinary life (McCubbin, Cauble, and Patterson 1982). In
addition to the unique pressures related to the nature of the disability itself (Hastings
et al., 2005), parents of children with autism are confronted with the same systemic
issues as parents of children with other disabilities.

23
 For many parents having a child with a disability will bring them into contact
with statutory agencies for the first time. This can place new and additional demands
on them as they attempt to navigate through unfamiliar systems and language leaving
them bemused as to how to access support or what they can expect from different
local authority or government agencies (Alderson and Goodey, 1999). Furthermore,
the burden of care may require parents to consider their ability to remain in full time
employment. In their study of mothers of children with disability, Curran, Sharples,
White, and Knapp (2001) estimated that following the birth of the child, 67% of
mothers are unable to maintain paid employment, placing additional economic
pressures on the family and potentially leading to mothers feeling more isolated.
This is a significant point when considering the mental and physical health of parents
of children with autism. The withdrawal of parents from full or part time
employment not only places financial strain on the family, but it also restricts
opportunities for caregivers to develop their own social relationships and contributes
to the development of emotional exhaustion by cutting off networks that may offer
social support (Hauser-Cram, Warfield, Shonkoff and Krauss, 2001; Hastings and
Brown 2002).

2.2.2 Parental Stress, Behaviour and Sibling Relationships

The behaviours exhibited by children with autism not only place demands on
their parents, but inevitably also places considerable strain on sibling relationships
(Sanders and Morgan, 1997). Children with autism are more likely to have a
restricted repertoire of play, poor eye contact and experience difficulties with joint
attention which not only limits social responsiveness but can create further disruption
to family life by impacting upon the quality of interaction with other children within
the family (Harris, 1994; Knott, Lewis, and Williams, 1995; Sanders and Morgan,
1997). Furthermore, studies have suggested that siblings of children with autism can
experience fear or be disturbed by their sibling’s challenging and bizarre behaviour
(Bägenholm and Gillberg, 1991;Roeyers and Mycke, 1995). While studies
examining the quality of relationships between siblings where one has autism has
drawn conflicting conclusions (Fisman Wolf, Ellison, Gillis, Freeman, and Szatmari,
1996; Kaminsky and Dewey, 2001; McHale, Sloan, and Simeonsson, 1986), there is

24
general acknowledgement that parental stress is influenced by concern over the
quality of interaction between siblings and anxiety over issues of welfare and safety
for non disabled siblings (Sherman 1988; Rousey, Blacher and Hanneman,1990;
Bromley and Blacher 1991; Kobe Rojahn, and Schroeder, 1991; Stoneman and
Berman 1993).
Where parents are unable to manage the behaviour presented by their child
with autism and/or where there is considerable concern for the welfare of a sibling,
parents and statutory services may have to consider alternative accommodation such
as a specialist residential school. This has both direct and in-direct consequences for
parental stress. Kiernan and Kiernan (1994) estimated that about 35 children within
each local authority area move from local severe learning difficulties (SLD) special
schools to residential provision each year in England and Wales because of problem
behaviour. In addition to feelings of guilt and loss experienced by all family
members, the distance between the family home and a residential school has the
potential to place additional stress and impact on relationships within families
through its impact on the maintenance of family contact (McGill, Tennyson, and
Cooper, 2006). In a study by Abbot, Morris and Ward (2001), that surveyed all
disabled children attending residential schools in England and Wales, severe learning
difficulties and autism were the most frequent categories of primary special
educational need.
The concern for the welfare of non-disabled siblings relates to the most
significant predictors of parental stress namely: behaviour, age and size (Tausig
1985; Sherman 1988; Rousey et al., 1990; Bromley and Blacher 1991; Kobe,
Rojahn, and Schroeder, 1991; Blacher, Hanneman, and Rousey, 1992). In their
longitudinal study of 3-year olds with and without disabilities, which included
children with autism, Baker, Blacher, Crnic and Edlebrock (2002) reported that when
the influence of behaviour problems on parenting stress was accounted for, mental
development explained no additional variance. Hastings, et al. (2005) observed that
families and carers report significant stress in managing and responding to behaviour
that is perceived as being anti-social. As discussed above the behavioural
characteristics associated with autism are not only those aspects of behaviour which
are difficult to manage but also those aspects which do not seem to fit into

25
behavioural patterns that are typically expressed in most social context. While
different cultures may have subtle differences in what is generally thought of as
socially acceptable behaviour, it remains that many of the behavioural features
associated with autism appear at odds with most cultural expectations of child
behaviour.

26
Chapter Three
Coping
3.1 Life Satisfaction in Parents
In their study of life satisfaction in parents of children with autism, Milgram
and Atzil (1988) found that parents did not relate life satisfaction to objective
evaluations of their child’s behaviour (as rated by teachers, principals and
psychologists), but rather to their ratings of their own parenting behaviours, such as
level of parenting difficulty, proportion of parenting tasks and fairness. This
suggests that while child behaviour may be a significant predictor of stress in
parents, it is how the parent perceives their own role and behaviours that influences
their own satisfaction
Scorgie and Sobsey (2000) label three transformational outcomes associated
with parenting a child with a disability; personal transformations in relation to the
acquisition of roles or traits, relational transformations with regard to family
relationships, advocacy relationships, friendship networks and attitudes towards
people in general, and perspectival transformations, which concern changes in how
people view life. Within this paradigm no value is placed on the nature of the
transformation, it is neither ascribed as being positive or negative.
In their study of mothers of children with autism, Tunali and Power (1993)
found in a sample of 29 mothers that those who showed the greatest life satisfaction
appeared to be those who were able to redefine those elements of their experiences
that would provide fulfilment and in the process redefine what provides fulfilment.
This has echoes of Scorgie and Sobsey’s transformational construct. As with the
construct of transformation, Tunali and Power conclude that where mothers are able
to re-appraise their lives, such as moving from being career orientated to family
orientated and where they perceive readily available support from their partners
and/or family, they are likely to experience less distress.

27
3.2 The Transactional Model of Stress and Coping
Our beliefs regarding our roles within our interactions provide meaning to
experience, as well as offering a basis for appraising and integrating those
experiences (Damasio, 2000). The ability to frame ourselves and our experiences, is
significantly influenced by the beliefs we hold and how they shape our sense of
identity. Beliefs, whether they be implicit or explicit have been shown to shape
established ways of responding to events and people, as well as our ability to cope
with stressful situations (Lazarus and Folkman, 1984). This suggests a role for
conscious strategies in responding to stressful events (Billings and Moos, 1981;
Folkman, 1984), as deriving meaning from a stressful situation can influence our
response to it.
Variables associated with coping have been identified as providing a possible
moderator effect in the relationship between stressful events and psychological and
somatic symptoms (Endler and Parker, 1988; Folkman, Lazarus, Gruen and De
Longis, 1986). The suggestion of such studies is that coping is an interactional
process, where well-being is influenced by the interaction between coping strategies
(variables which are person oriented), and stress generated by the situation/ event
(situational variables), (Taylor, 1991).

3.2.1 The Role of Coping

Coping would seem to play two important functions: regulating stressful
emotions (emotion-focused coping) and altering the troubled person-environment
relation causing the distress (problem-focused coping), (Andrews, Pollock and
Stewart, 1989; Folkman and Lazarus, 1985; Miller, 1987). A number of studies in
this area place emphasis on the identification of individual coping styles and
discussion has focussed around the features and dimensions associated with coping
responses (Endler and Parker, 1990; Folkman and Lazarus 1980). However, a
consensus generally remains among studies which have explored stress and coping
from an interactional paradigm, that there are two dimensions of coping response
Problem focussed or task- oriented coping and emotion -oriented coping (Miller,
1987; Endler and Parker, 1990; Folkman and Lazarus, 1985).

28
3.2.2 The Role of Appraisal
The theory of psychological stress outlined by Folkman et al. (1986)
identifies cognitive appraisals as critical to the stressful person-environment relations
and their immediate and longer term outcomes. Cognitive appraisal is a process
through which an individual evaluates whether a particular encounter is relevant to
his or her well-being, and if so, in what ways. This construct can then be further
divided into primary and secondary appraisals. A primary appraisal, is that which
involves an evaluation by the individual as to whether there is a cost or benefit to
their well being in this encounter. For example, is there a potential harm or benefit
with respect to commitments, values, or goals? Is the well-being of a significant
other such as a child at risk? Is there the potential for harm or a benefit to self-
esteem? Such appraisals’ are made on a day-to-day basis by parents of children with
autism.
A secondary appraisal, requires the individual to evaluate what if anything
can be done to avoid or prevent harm or to improve the prospects for benefit. Here a
number of coping options are considered, such as altering the situation in some way,
accepting the situation, attempting to gain more information, or holding back from
acting impulsively which could in turn have some form of cost to the individual,
particularly if they perceive the situation to be in crisis. Primary and secondary
appraisals converge in determining if the interaction between the individual and the
environment is in some way relevant or significant for well-being, and if so, whether
the encounter is primarily threatening with potentially negative outcomes, or
challenge which may result in mastery of the situation and ultimately positive
outcomes, figure 2 on p.27 illustrates the sequence of primary and secondary
appraisal.

29
 Figure 2, The Transactional Model of Stress and Coping (Lazarus and
Folkman (1984)

3.2.3 Coping and Appraisal within Dynamic Context

Within the model outlined above coping is defined as the individual’s
dynamic process of adapting cognitive and behavioural efforts to manage specific
external and/or internal demands that are appraised as placing stress on an
individual’s resources (Lazarus and Folkman, 1984). This definition incorporates
three principal characteristics. Firstly, it is process oriented, focussing on what the
individual thinks and does in a given stressful encounter, and how this dynamic alters
as the encounter progresses. Secondly, it is viewed as contextual, being influenced
by the individual’s appraisal of the demands (made of the individual) within the
encounter and resources required for managing them. This emphasis on context
implies that the combination of person and situation variables together influence the
outcome of coping efforts. Thirdly, the definition postulated by Folkman and
Lazarus (1980) makes no assumption as to what constitutes good or bad coping.

30
Simply put, coping is an individual’s efforts to manage demands, irrespective of
whether they are successful.
As will be discussed in the following chapters, many parent-mediated
interventions for children with autism take little if any consideration of the dynamic
process involved in managing the child’s behaviour. The dynamic nature of stressful
encounters experienced by parents requires intervention to consider parental
appraisal styles and explore the personal resources available to the parent within the
given context.

3.2.4 Controllability
Folkman and Lazarus (1980) found that individuals are more likely to employ
task or problem-focused coping styles when they appraise a situation as changeable,
and more likely to employ emotion-focused strategies when they appraise a situation
as unchangeable. If an individual considers that they are unable to place any control
on the situation, individuals are more likely to use emotion-focused coping as
described above. However, if the individual perceives that they are able to have
some element of control over the situation then they are more likely to employ task-
oriented coping strategies.
Parents of children with autism are continually exposed to stressful events
that have elements of both low and high controllability. The degree of controllability
can be influenced by a number of factors such as environment, child mood, social
support, child frustration and parental exhaustion. Given that perceived
controllability will vary within each situation, it seems plausible that intervention for
parents should assist them in assessing those aspects of their child’s behaviour where
an emotion focussed coping style such as allowing the child to calm is best employed
and those where a problem or task-oriented coping style such as using behavioural
strategies is best employed.
Furthermore, a number of studies have examined the qualitative nature of the
primary appraisal and its’ impact on coping, (Lazarus and Smith, 1988; Smith,
Hayes, Lazarus and Pope, 1993; Smith and Lazarus, 1993). These studies describe a
conceptually similar, if not identical, component of primary appraisal termed
motivational relevance. Motivational relevance can be viewed as an evaluation of

31
the extent to which the encounter touches on personal commitments, goals, and
concerns, such as ensuring child welfare and maintaining family relationships. In a
college student sample, Smith et al. (1993) found that greater motivational relevance
was related to stronger emotional responses to stressors, demonstrating that those
events viewed by the individual as being highly significant will result in more stress.
We would therefore consider that many encounters experienced by parents of
children with autism will have motivational relevance and it is possibly this factor
that plays a significant role in determining the coping styles adopted by individual
parents. However, it is possibly the interaction between the primary appraisal and
the degree of controllability perceived when making secondary appraisals that
predicts parental distress.

3.2.5 Adapting Coping Style

On reviewing the transactional model of coping Scale, Folkman, Lazarus,
Dunkel-Schetter, DeLongis and Gruen (1986) found that individuals were more
likely to use both confrontive coping (a task oriented coping style) and self control
(an emotion focussed coping style) in encounters where they viewed there was the
risk of loss of respect for another. This would be the case for a parent of a child with
autism where onlookers within a public setting consider the child’s behaviour as
inappropriate. Similar to earlier findings Accepting responsibility (task oriented) and
positive reappraisal (emotion focussed) were found to be employed by individuals
where the encounter was viewed as being changeable. This finding is consistent with
other studies, which found that positive reappraisal facilitates task- oriented coping
(Aldwin and Revenson, 1987). In addition, (Folkman et al., 1986) found that where
individuals viewed situations that were changeable they used coping styles that
enabled the individual to focus on the situation they confronted, did planful problem-
solving, accepted responsibility, and selectively attended to the positive aspects of
the encounter. It would therefore seem that an individuals ability to adapt coping
style relative to how they perceive they can exert influence on a stressful situation
will in part determine the physical and psychological impact of the stressful
encounter. However, as acknowledged by the authors there are limitations to
understanding causal direction, particularly in understanding the role of appraisal.

32
 While appraisal may influence coping, it is also possible that coping may
influence the person’s reappraisal of what is at stake, and what coping options exist.
This has a “knock on” effect for intervention as it would seem important that in
addressing stressful situations, parents experience success through their ability to
adapt their coping style as the stressful situation unfolds. If intervention is able to
assist parents of children with autism in identifying those aspects of the child’s
behaviour that they feel they have the coping resources to address and experience
some success in, it is possible that parents will re-appraise the challenging nature of
that behaviour. Moreover if an individual experiences a reduction in distress from
using a problem-solving approach, and perceives that the situation is changeable,
then they are more likely to use this approach in the future. However, if an
individual experiences an increase in distress they are more likely to reappraise the
situation and view it as less changeable. The implication being, that for parents of
children with autism we should consider focussing on those situations that are more
likely to provide positive re-appraisal, and combine this with psycho-educational
approaches that encourage problem-solving strategies for specific behaviours.

3.2.6 Parental Appraisal and Understanding the Child’s Autism

In addition to a parent’s perception of triggers and setting events, parental
affect during stressful encounters with their children is influenced by a variety of
both child and parent characteristics and the degree to which they interact. Lazarus
(1991) suggests that causal attributions are forms of knowledge rather than appraisals
since they do not have similar emotional implications for all individuals under all
circumstances. This Cognitive-motivational-relational theory contends that appraisal
rather than attributions provide the link to emotional experience. In situations where
an individual holds an understanding of the locus of causality of a stressful event
either to the self or to an agent outside of the self, (such as relating the event to a
child’s disability), then we would anticipate that the individual will experience a
range of emotions as part of the process of appraisal. The nature and degree of
emotion experienced is dependent on the meaning of the event to the individual.
Meanings can either be congruent or incongruent depending upon whether the
individual assigns credit or blame when determining causality within the event.

33
While credit can take the form of pride, positive affirmation of self image or
improved self efficacy, blame can be directed as anger to an external agent or as
guilt, when directed inwardly. This may in part explain observations of parental
behaviour as a response to an on-going chronic stressful situation. In their study of
American Latino mothers of children with autism, Chavira, Lopez, Blacher, and
Shapiro (2000) found that mothers who attributed a high versus low degree of
responsibility to their children when they exhibited problem behaviours were
significantly more likely to report experiencing negative emotions such as anger or
frustration and to report that they typically respond in aggressive or harsh ways.
Moreover, studies which have examined self blame in mothers of children with
developmental disorders such as autism, have found that the experiences of grief,
shock, confusion, fear, worry, isolation, anger, numbness and sadness, when given a
diagnosis can often be combined with cognitions of questioning if they somehow
inadvertently contributed to their child’s atypical developmental pattern (Siegel,
1997; Sullivan, 1997). The above suggests a fairly important role for parental
understanding of autism and how it presents in their child. Parental appraisal of
child behaviour and the parents’ ability to relate that to the child’s autism or stage of
development has significant implications for how that parent copes with on-going
care demands.
In Lazarus’ theory the knowledge an individual holds regarding locus of
causality is insufficient to develop affect. It is when this knowledge is used to
appraise the relevance of the event to the individual’s goals, and whether it is
congruent or incongruent with those goals that determines emotional outcomes such
as self-efficacy, blame or anger. For parents of children with autism the child’s
disability, the resulting atypical behaviour and the level of social stigma combine to
influence emotional outcomes as both an on going process and as events are played
out on a day–to-day basis. The role of intervention should then be to assist parents
of children with autism to develop knowledge and understanding of their child’s
behaviour. This can assist parents in establishing realistic expectations of their child
rather than have unrealistic goals of child behaviour that may cause distress in both
child and parent.

34
 A number of studies have highlighted the use of reframing strategies to allow
individuals to cope with low control situations and thus reduce the impact of stress
(Folkman et al., 1986; Rothbaum, Weisz, and Snyder, 1982). How an individual
appraises a stressful experience at both a primary and secondary level has significant
implications for which coping strategies they will employ both now and in the future.
However, there remains a significant gap in our understanding as to how problem-
appraisal strategies fit into situations where there is an on going process of coping
with an uncontrollable, long-term stressor such as caring for a child with autism.
Using Maslow’s hierarchy of needs (Maslow, 1954), Tunali and Power (1993)
examined some of these issues in parents of children with autism. In their analysis,
the authors concluded that where individuals perceive that basic human needs are
under threat, they are likely to redefine what constitutes fulfilment of those needs and
seek alternative ways of meeting them. Using the same methodology Tunali and
Power (2002), examined role definition in 29 mothers of children with autism,
matched against 29 mothers of children who were typical in development.
Hypotheses tested included views such as: mothers of children with autism would
place greater emphasis on child rearing than career development, and mothers of
children with autism would place greater emphasis on family leisure time than a
mother of the typically developing group. While the study showed that mothers of
children with and without autism did not differ overall in psychological adjustment,
life satisfaction, or marital satisfaction, mothers of children with autism who showed
the greatest life satisfaction appeared to be those who made redefinitions. In addition,
the study found that mothers of children with autism placed less emphasis on the
opinion of others regarding their child’s behaviour, than did mothers of children
without autism.

3.2.7 Centrality
In some instances, stressful events may be perceived by an individual as
central to their well-being, as the stakes involved are particularly high. Such
instances may be where the stressful event involves the safety or welfare of a
significant other and where a strong bond or attachment is involved. This notion of
centrality as a component of a primary appraisal has been hypothesised as an

35
important mediator in stress (Lazarus and Smith, 1988; Smith et al., 1993),
particularly as individuals are more likely to use emotion-focused strategies during
such encounters. A number of studies have shown a positive relationship between
caregiver stress and specific behaviours such as physical aggression, self-injurious
behaviour and restlessness, which are frequently exhibited by individuals with
autism (Konstantareas and Homatidis 1989; Freeman, Perry and Factor, 1991).
During episodes of challenging behaviour, the stakes to the caregiver may be
significantly high, particularly where the event may be witnessed by bystanders or
where there is a risk of harm to either child, parent or a third party. Moreover, such
situations may be perceived by the parent or caregiver as low control situations. As
described earlier Low control situations are characterised by context where the
individual may hold the belief that there is little or nothing that can be done to
influence the nature or the outcome of the situation (Folkman, 1984; Roth and
Cohen, 1986). The literature within this area is somewhat equivocal. Researchers
such as Roth and Cohen (1986) and Wortman and Brehm (1975), suggest that the use
of problem-focussed coping in low control situations is likely to have a detrimental
effect, due to the frustration and disappointment experienced by individuals as a
result of being unable to effect change on the situation. Likewise, Masel, Terry, and
Gribble (1996) propose that emotion-focused coping responses are adaptive, and due
to the need to deal with the feelings of hopelessness that are typically generated by
low-control stressors, may offer a more appropriate coping style. However, this
goodness of fit model, where coping styles are employed relative to adaptation and
levels of control within the situation, has been found to be inconsistent across a
number of studies (Felton, Hinrichsen and Revenson,1984; Forsythe and Compas,
1987).

3.2.8 Goodness-of-Fit
The lack of consensus regarding the relationship between coping style and
perceived controllability of an event is reflected in Vitaliano, DeWolfe, Maiuro,
Russo,and Katon’s (1990), study of people with psychiatric, physical health, work,
and family problems (n = 746). When examining correlations between problem-
focussed coping and stress related symptoms such as depression in low control

36
situations, the authors did not find any relationship as suggested within the goodness-
of-fit model. Moreover, in perceived unchangeable situations, the study did not find
any relationship between emotion focussed coping and positive adjustment. Counter
to the goodness-of-fit model all three groups showed a positive relationship between
emotion-focussed coping and depression, although this was only statistically
significant in one sample. The Vitaliano (1990) study was replicated by Conway and
Terry (1992) with similar findings, supporting the notion that predicting coping style
relative to perceived control of event, remains contentious. However, Terry and
Hynes (1998) have sought to resolve inconsistencies within the goodness-of-fit
model by re-conceptualising the construct of problem-focussed strategies. They
contend that problem-focussed approaches can be sub-divided into two forms:
problem management strategies and problem appraisal strategies. Problem-
management strategies are efforts to address the problem through developing plans
of action they are solution focused in nature and focus the individual’s resources on
finding a solution. While Problem-appraisal strategies are also directed towards the
management of the problem, they do not directly address the content and detail of the
stressful event. Instead they are employed by the individual to assist in the appraisal
and assessment of the event. Positive reframing and seeking opportunities for
development from the event are all cognitions associated with problem appraisal
strategies. Likewise the authors propose that emotion-focussed coping can be
subdivided into avoidant-coping, associated with wishful thinking, escapism and
disengagement and emotional approach coping associated with, expression of
emotion pertinent to the stressful situation. In developing parent mediated
interventions in families of children with autism, it would seem sensible to consider
how parents frame events particularly when it comes to their understanding of their
child’s behaviour. As suggested there may be scope for growth and development
within parents who learn the context in which problem appraisal strategies are the
most effective.

37
3.3 Coping within the Context of the Family
World views are the family’s assumptions about the social and cultural
environment, and their family’s place in the world (Patterson, 1991). Belief systems
constitute the core of a family’s overall resilience (Hawley and DeHaan 1996; Walsh
1998). They provide anchorage and stability, and a shared sense of meaning that
helps families pull together and face future challenges (McCubbin and McCubbin
1993). Belief systems also serve as cognitive maps that guide the choices families
make for their everyday activities (Rolland 1993; Kumpfer 1999). Central to this
notion of pulling together is the idea of a sense of coherence, which enhances the
family’s resilience. Rutter (1993) suggested that resilience is dependant on how
individuals reframe events and experiences as a means of deriving meaning from
their change in circumstances. This ultimately allows the individual to change how
they view their place in the world, and while initially viewing their situation as being
a negative experience through a process of reframing, individuals are able to adapt
their cognitions and view their place in society from a more positive perspective.
Studies which have examined families where a child has additional support needs
indicate that families that seem to cope are those that can attribute positive meanings,
are able to exercise some control over their situation and are able to reframe the
family context as manageable (Summers, Behr, and Turnbull, 1989; Patterson
1991;Kazak, McClure, Alderfer, Hwang, Crump, Deatrick, Simms, and Rourke,
2004). Moreover, Samios, Packenham and Sofronoff (2008) found that parents of
children with autism who were able to construct benefits relating to their child’s
disability had a greater sense of cohesion.

38
Chapter Four
Parent-Mediated Interventions
4.1 Intervention in Autism
In May of 2013 the American Psychiatric Association (APA) will publish the
updated Diagnostic Statistical Manual (DSM V) in which a more dimensional
approach to diagnosing autism will be described. The continued clarification of the
deficits in social interaction and communication while confirming the prevalence and
complexity of this disorder also emphasises the gulf between basic science and
therapeutic intervention, intensifying the distress and frustration of many parents.
Parents are confronted with an ever increasing and changing number of
interventions that purport to improve the symptoms associated with autism.
Therapies which have received considerable attention include pharmacological
therapies and various complementary therapies such as diet modifications and
vitamin therapy as well as therapies offered within the health, social and educational
systems which include occupational therapy, speech and language therapy and
behavioural and developmental approaches (Volkmar, Paul, Klin and Cohen, 2005).
The bewildering assortment of interventions, books, DVD’s and general information
circulating the internet on how to best intervene with a child who has autism can
often leave parents confused and anxious. Some therapies make dramatic and
questionable claims such as being able to cure autism (Kaufmann, 1994) with others
offering a pseudo-scientific basis derived from other areas of scientific enquiry such
as Mercury Chelation Therapy (Bradstreet et al., 2003), or Auditory Integration
Therapy (AIT) (Berard, 1983). The frustration felt by parents often leaves them
vulnerable to dramatic claims, with many parents feeling the need to take action
irrespective of emotional and financial cost (Fitzpatrick, 2008). In 2007 the Shirley
foundation carried out an evaluation of the aggregate national costs of supporting
school aged children with autism in the U.K. In considering the breadth of the
spectrum, the study concluded that the then public expenditure alone was
approximately £2.7 billion per annum, with conservative estimates of lifetime costs
ranging from £2.9 to £4.7 million per person. Despite the large sums of both public
and private money, autism remains a life long condition with no cure (Frith, 1989)

39
 In general, therapeutic interventions for promoting social, adaptive and
behavioural function in children with autism that have a more credible evidence base
(National Research Council, 2001; Scottish Intercollegiate Guidelines Network,
2007) fall within a continuum of behavioural and developmental interventions. Such
interventions range from highly structured therapist guided behavioural approaches
to social pragmatic approaches that follow the child’s interests and are set within the
schedule of daily activities of the school, home or leisure environment. It is from
both the behavioural and developmental literature that most parent-mediated
interventions are developed (Howlin, Magiati and Charman, 2009; Sofronoff, and
Farbotko, 2002).

4.2 Parent-Mediated Intervention

There has been an increasing shift towards involving parents as therapists
with a number of interventions delivering training to parents so that they become
both parent and therapist. The general rationale for taking this approach has been to
increase the availability and intensity of interventions and has been adopted by most
therapies that have a focus on behaviour management or skill acquisition (Lovaas,
Koegel, Simmons, and Long1973; Schopler and Mesibov, 1984; Schreibman,
Koegel, Mills and Burke 1984; Mahoney et al.1999). However, research to date has
focused almost exclusively on the outcome for the child, and there is little known
about the effects of involvement for the whole family or the impact on parents of
delivering such interventions. The scope of this thesis is not broad enough to carry
out a detailed description and critique of all parent-mediated interventions. Rather
this thesis reviews five approaches that cite either developmental or behavioural
paradigms as a basis for their approach, are aimed primarily at parents, and are used
within the UK (Diggle, and McConachie, 2002; Roberts and Prior, 2006; National
Autistic Society, 2007).

40
4.3 Behavioural Approaches
Therapist guided behavioural approaches derive their theoretical basis from
early behaviourist orientated learning theory (Skinner, 1953). Early animal research
asserted that an animal’s behaviour could be shaped through conditioned
reinforcement and that the function of behaviour could be understood from a
classical conditioning paradigm (i.e., an initially neutral cue acquires value because
of its association with primary reinforcement). This cue value interpretation of
behaviour was adapted and researched for the development of skill acquisition in
children with autism (Lovaas et al., 1966) and is routinely used in Discrete Trial
Training (DTT) (Lovaas et al., 1981) and Pivotal Response Training (Schriebman
and Koegel, 2005), the key approaches employed in Applied Behaviour Analysis
(ABA) (Cooper, Heron and Heward, 2007).
Green et al. (2006) identified 111 treatments used by parents of children with
autism with their findings indicating that the most used treatment categories are
standard therapies and treatment focusing on skills training, especially those based
on the principles of Applied Behaviour Analysis.

4.3.1 Discrete Trial Training

The cornerstone of DTT is the specification and measurement of achievable
learning objectives (Smith, 2001), which are then broken down into small teachable
steps that are presented in the format of a discrete trial (Cohen, Amerine-Dickens,
and Smith, 2006; Eikeseth, Smith, Jahr, and Eldevik, 2002). A particular trial may be
practiced numerous times until the skill is mastered.

Smith (2001) identifies three steps that are common to all discrete trial
methods:

▪ The discriminative stimulus (SD) - the instruction or environmental cue of

which the therapist expects a child’s response (e.g., “What colour is it?”,
“Point to the ball”, or “Do what I am doing!”, etc.)

41
 ▪ The child’s response - the skill or behaviour that is targeted. If the child does
not respond or responds incorrectly, usually the therapist would then provide
a prompt to ensure learning.

▪ The consequence - usually in the form of reinforcement, a reward that is

intended to motivate the child to respond in this same way more in the future.

This procedure is repeated until the therapist is confident that the child has
mastered the skill. The therapist can then manipulate the discriminative stimulus and
consequence in subsequent steps to facilitate the child’s attainment of the overall
learning objective. Possibly the most evaluated ABA approach which has the
principles of DTT at its core is the UCLA Young Autism Project developed by
Lovass and colleagues (1981), which has evolved into what is commonly referred to
as Lovass therapy (Maurice, Green and Luce, 1996) and which is referred to under a
range of other ABA headings (Handleman, Harris, Arnold, Gordon, and Cohen,
2006). Lovass based approaches are performed within either the school or home
environment and within a one to one context where the child cannot be easily
distracted by other stimuli. This labour intensive requirement has significant
implications for classroom management and the availability of home and school
resources, particularly at a time of limited public sector finances.

4.3.2 Pivotal Response Training

In contrast to the highly structured therapist led approach of DDT, Pivotal
Response Training (PRT) is a loosely structured, naturalistic intervention relying on
naturally occurring teaching opportunities and naturally occurring consequences
(Schreibman, 2000). Unlike DDT, which provides reinforcement not related to the
task, such as offering food for completing a visual matching activity, PRT uses
reinforcement directly related to the activity the child is engaged in. For example, if
a goal of intervention is to teach the child to wait and take turns, then the therapist
may use a naturally occurring play scenario, providing reinforcement by offering a
choice of toys favoured by the child for waiting appropriately for their turn in the
game.

42
 An overall aim of PRT is the improvement of autonomy, self-learning, and
generalisation. Koegel, Koegel, Harroer, and Carter (1999) identify the following
four pivotal behaviours: responsivity to multiple cues, motivation, self-management,
and child self-initiations, which should be targeted through the procedure outlined
below:

Procedural Core Elements of PRT

1. The instruction should be clear, appropriate to the task, uninterrupted, and the
child should be attending to the therapist or task
2. Maintenance of previously mastered tasks should be interspersed frequently
3. Multiple cues (such as verbal, gestural, visual) should be presented if
appropriate for the child's developmental level
4. The child should be given a significant role in choosing the stimulus items.
5. Rewards should be immediate, contingent, uninterrupted, and effective.
6. Natural or direct reinforcers should be used the majority of the time with
rewards being contingent on response attempts.

Both DTT and PRT fall under the umbrella of the general term Applied
Behaviour Analysis. While there are a number of variants of ABA, the principles
and procedures are generally consistent to those found in DTT and PRT (Cooper
Heron, and Heward, 2007; Steege, Mace, Perry and Longnecker, 2007). However, a
number of authors have highlighted inconsistencies of the effects of discrete trial
learning. Studies that have compared discrete trial training to controls where no
treatment was provided, have reported positive statistically significant findings only
in motor and functional outcomes. In contrast, speech-related outcomes, were
generally negative (Howlin ,1981; Pechous, 2001). Furthermore, while behavioural
therapy may be provided for up to 40 hours per week (SIGN, 98) there is still
significant debate as to the intensity required to achieve positive outcomes
(McEachin, Smith and Lovaas 1993; Howard, Sparkman, Cohen, Green and
Stanislaw, 2005). In addition, a meta-analysis by Hourmanesh (2006) suggests a lack
of evidence to assert that one approach within the ABA framework is more effective
than another.

43
 While proponents of ABA advocate its empirical rigour (Green et al., 2006),
others have highlighted that this is overstated pointing out methodological issues
regarding treatment integrity (the consistent implementation and delivery of the
programme) (Howlin, Magiati and Charman, 2009). Wheeler, Bagget, Fox and
Blevins (2006) reviewed a series of behavioural intervention studies of children with
autism (n = 60), which had been published across 9 journals specialising in the areas
of autism and/or developmental disability between the years 1993–2003. The review
established that only 11 studies of those reviewed operationally defined the
independent variables and assessed treatment integrity. Similarly, McIntyre,
Gresham, Di Gennaro, and Reed (2007) reviewed school- based intervention studies
published in the Journal of Applied Behaviour Analysis between the years 1991 and
2005 (n=142). The authors found that only 30% of the studies reviewed provided
data regarding treatment integrity. The issue of treatment integrity is an important
one. Not only because it limits any assertion by proponents of an approach that there
is a relationship between the independent variable and the efficacy of the approach,
but it also has significant implications for the teaching of that approach to non-
professionals such as parents, whose prior knowledge, experiences, beliefs and
relationship to the child will be different from that of the therapist.
A review of guidelines and systematic reviews (Scottish Intercollegiate
Guideline Network, 2007; Howlin, Magiati and Charman, 2009; McConachie and
Diggle, 2007; Eldevik et al., 2009) suggests that the ABA approaches most
commonly employed in parent mediated intensive behavioural programmes are those
based on the principles of DTT and PRT. A number of studies (Lord et al., 2005;
National Research Council, 2001 and Smith, Donahoe and Davis, 2006) identify
early intensive home-based behavioural interventions (EIBI) as being among the
most thoroughly evaluated of the ABA approaches.

4.3.3 Problems with ABA Approaches

Fundamental to ABA is the principle of objective measurement and the use of
empirically driven analysis (Baer, Wolf and Risley, 1987). In keeping with these
principles, most ABA researchers have focussed on easily measured variables such
as age, initial IQ and language when identifying factors related to treatment response.

44
In so doing, researchers have avoided broader variables such as parental coping and
the stress experienced by children and family members. Several researchers have
raised serious concerns regarding ABA approaches and their reported outcomes
(Lord et al., 2005; Schreibman, 2000; Smith, 1999). Schopler, Short, and Mesibov
(1989) noted that the outcome measures employed in ABA studies such as IQ and
school placement (Lovaas, 1987; McEachlin et al. 1993), do not reflect true overall
functional changes in children with autism. For example, a child may show major
increases in IQ over time without improving his or her ability to function in social
situations or improve their ability to regulate their behaviour. Moreover, Schopler et
al. (1989) assert that increases in IQ scores, could reflect increased compliance with
testing rather than true changes in intellectual abilities, and school mainstreaming
may be more a function of parental and therapist advocacy and changing school
policies than increased educational functioning per se. In addition, Mesibov (1993)
expressed concerns about pre-treatment differences between experimental and
control groups in studies of ABA interventions, and about the many domains of
functioning in which deficits commonly associated with autism (e.g., social
interactions and conceptual abilities) were not assessed. Mundy (1993) raised similar
concerns, noting that many high-functioning autistic individuals achieve IQ levels in
the normal range, thereby raising fundamental questions about the use of IQ scores to
measure the so called “recovery” from autism that some ABA approaches advertise.

4.3.4 Parents as Therapists

While ABA interventions use the principles of discriminative stimulus
response and consequence highlighted above, approaches to training parents as
therapists differ between specific programmes (Keenan, Kerr and Dillenburger,
2000; Richman, 2001). Some programmes teach parents the use of distinctive
treatment procedures in a prescriptive and mechanical way (Boyd and Corley, 2001)
while others start by educating parents about the general behavioural principles of
behaviourism (Keenan, 2001), such as operant conditioning (Hilgard, 1988) and how
these principles were later adapted for use with children with autism (McEachin,
Smith and Lovaas, 1993). Proponents of ABA approaches consider it unnecessary to
speculate about internal mental processes when explaining behaviour and instead

45
view that it is enough to know which stimuli elicit which responses. In doing so they
hold the belief that the underlying cognitive and emotional issues which challenge
people with autism and their families are irrelevant in addressing behavioural
challenges (Bandura, 1969). In her review of ABA approaches Chiesa (1994),
asserts that ABA therapists not only practice as therapists within the behavioural
paradigm but also teach the delivery of programmes to parents within this
framework, encouraging then to interpret their child’s behaviour as purely a function
of environment ignoring any underlying cognitive issues.

4.3.5 Parental Stress and the ABA Approaches

Given that outcome measures of ABA approaches have excessively focussed
on IQ as discussed above, there has been limited investigation into the experience of
stress and the coping styles employed by parents conducting ABA home-based
interventions. Two studies examined the question of whether parents’ stress levels
affect their children’s progress in intervention; these used different interventions and
measures of stress. Robbins, Dunlap, and Plienis (1991) found an inverse
relationship between the levels of parental stress at the time of programme entry and
the progress that was demonstrated by 12 children with autism in a pivotal response
type behavioural program. Osborne, McHugh, Saunders, and Reed (2008) examined
the effect of parental stress on the outcomes of different types of teaching
interventions for 65 children with autism who were divided into four groups, based
on the levels of time intensity of their intervention, and on their parents' stress levels.
While educational and intellectual gains were observed across all 4 groups, initial
parental stress had a negative impact on child outcomes for high time intensity
interventions.
Many of the studies that have explored stress in parents who are employing
ABA approaches have been conducted by proponents of the ABA approach and have
claimed that the intervention can in fact reduce stress in families of children with
autism by improving the development of intellectual functioning (Smith, Buch and
Gamby, 2000). However, many of these studies have methodological issues and/or
contradictory results. For example, Schwichtenberg, and Poehlmann (2007) studied

46
the impact on mothers of children with autism where an ABA programme had been
in place for a period of 6 months. The authors found comparative rates of depression
in the mothers of the intervention group with those in mothers of children with
autism in general. While mothers reported fewer depressive symptoms when their
child was both older and participated in more ABA therapy hours, they also reported
more personal strain when the mothers themselves were involved in the delivery of
their child’s programme. Studies such as this raise a number of questions regarding
the relationship between parental stress, coping and interventions such as ABA,
which seek solely to focus on the child. The study described above used a relatively
small sample (n=41) of mothers in families engaged in ABA programmes.
Moreover, while the authors assert that maternal depressive symptoms were less
when their child was engaged in more therapy hours, the study fails to take into
account that those families who were engaged in more intensive intervention were
also those which made greater use of external therapists, thus providing mothers with
respite from delivering care. In addition, no comment is made regarding child
compliance and motivation. It is therefore difficult to assert that reduced maternal
depression is a consequence of increased access to ABA therapy as it can just as
easily be said that those children who engaged more were more motivated to do so
and were on the whole more compliant.
4.4 Stepping Stones Triple P and Triple P Programmes
The Stepping Stones Triple P programme (SSTP) is a multilevel system of
parenting intervention designed to improve the quality of parenting advice available
to parents of children who have a developmental disability (Sanders, Mazzuchelli
and Studman, 2004) SSTP represents a parallel version of the core Triple P-Positive
Parenting Programme, which was developed for children who are developing
typically (Sanders, 1999). The approach is described as a multilevel programme as it
includes intensive individually delivered face-to-face interventions, group
interventions, more cost and time effective brief interventions, large group seminars
and media based interventions (Sanders, 1999) and is based on a number of
contemporary theoretical perspectives in psychology including learning theory and
applied behaviour analysis (Sanders, 1999)

47
 Within the Triple P approach parents are taught 25 strategies based on the
following: incidental teaching, (McGee, Krantz, and McClannahan, 1985); backward
and forward chaining, (Hagopian, Farrell, and Amari, 1996); teaching your child to
communicate what they want, (Tait, Sigafoos, Woodyatt, O’Reilly, and Lancioni,
2004); brief interruption, (Azrin, Besalel, Jamner, and Caputo, 1988). The 25
strategies are incorporated into five levels of intervention on a tiered continuum of
increasing strength with the aim of catering for the different levels of support that
families require (See Figure 3).
Level 1: A universal parent information level involving media and communication
strategies.
Level 2: A brief selective intervention level delivered through primary care services.
Level 3: A preventive intervention level targeting parents who have mild and
relatively discrete concerns about their child's behaviour or development.
Level 4: A more intensive prevention intervention level targeting parents who have
children with high-risk detectable problems, but do not yet meet diagnostic criteria
for a behavioural disorder.
Level 5: An enhanced family behavioural intervention level for families where
parenting difficulties are complicated by other sources of family distress. It extends
the focus of intervention to include focus on marital communication, mood
management, and stress- coping skills for parents.

Figure 3. The Triple P Model of Graded Reach and Intensity of Parenting and
Family Support Services (Sanders et al., 2004).

48
 The underlying principle of this tiered approach is that there are differing
levels of problem behaviours in children that place differing demands on parents.
However, implicit in this is the notion that parental stress and coping is linked
inextricably to child behaviour.
The evidence base for the original Tripe P approach is relatively strong
(Sanders, 1999; Sanders, Markie-Dadds, Tully and Borr, 2000), and it has been
broadly employed across the UK by both the National Health Service (NHS) and
local authority statutory services. In May of 2010 NHS Greater Glasgow and Clyde
and Glasgow City Council invested significantly into the programme and made it
available to all Glasgow families who had children younger than 16 years
(NHSGGC, May 2010, Child Health and Well Being Triple P/ Stay Positive).

4.4.1 Problems with SSTP

Uptake of SSTP approach in the UK is more limited than that of Triple P, as
there have been few studies that have evaluated SSTP as an intervention for families
with children with autism or other developmental disorders. Whilst Whittingham,
Sofronoff, Sheffield and Sanders (2009) reported positive changes in parental rating
of behaviour in 59 parents of children with autism, there have so far been no studies
conducted outwith Australia. In addition, while researching this thesis the author
was unable to identify any NHS Board in Scotland who were currently using the
SSTP. In addition to the lack of empirical evidence to support the use of SSTP in
families of children with autism, Probst, Glen, Spreitz, and Jung (2010) questioned
the social validity of the intervention for children with developmental disabilities. In
their evaluation of the approach, they provided 33 masters-level psychology students
with documentation from the programme, which outlined some of the behavioural
strategies that SSTP employs. All 33 participants rated the strategies of quiet time
and time out as lacking in both ethical acceptability and practical applicability. This
suggests the need for further studies to not only evaluate the impact of SSTP on child
and parent variables, but a more rigorous evaluation of the social validity of some of
the treatment components for children with developmental disorders.

49
4.5 Floortime
Floortime, is a developmental approach developed by Greenspan and Wieder
(1997), and promotes social interaction between an autistic individual and an adult.
Adults are instructed to follow the child's lead and build on what the child does to
encourage further interaction. By following the child’s interests and motivations,
parents help their child learn how to attend to others, engage in a dialogue, take
initiative, learn about causality, and how to solve problems. An adult may purposely
make the wrong move so that the child has to direct the adult in how to fix the
problem and keep the interaction going. For example, if a child wants to line up
blocks, his/her parents will join the child with the intention of developing an
affective interaction, rather than demand that the child join them in an activity of
their desire as is the case in many educational approaches such as ABA.
Greenspan called the back-and-forth communication between the child and
the adult ‘circles of communication’. Through such circles, parents can enable their
child to connect his/her emotions and intent to their behaviour.

There are five basic steps to facilitate floortime:

1. Observation
• Observe the child by listening and watching in order to determine how to
approach the child
2. Approach – open circles of communication
• Once a child’s mood has been assessed, the adult should approach the
child with appropriate words and gestures, elaborating and building on the
child’s interests
3. Follow the child’s lead
• Be a supportive play partner who is an ‘assistant’ to the child in the activity
of their desire. Allow the child to set the tone and direct the action. This
allows the child to take initiative and be assertive. The interaction gives the
child a sense of warmth, connectedness, and a feeling of being understood.
4. Extend and expand play

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 • Allow the child to express their own ideas and ask questions to stimulate
creative thinking
5. Child closes circles of communications
• The child builds on the adult’s comments and gestures with their own
comments and gestures. The child begins to recognise and appreciate the
value of two-way communication.
Greenspan and Wieder (1997)

Advocates of developmental approaches such as Floortime have asserted that

intervention can change the way parents interact to increase reciprocity and that these
changes are correlated with changes in social engagement and in language
Gernsbacher (2006). In a randomised controlled trial looking at joint attention and
symbolic play in 58 children with autism Kasari et al. (2008) found that expressive
language gains were greater for treatment groups which used developmental
approaches compared with the control group that was based only on behavioural
principles.

4.5.1 Problems with Floortime

Literature on the effectiveness of floortime is sparse, and the few studies that
exist have significant methodological issues in terms of both sample size and
treatment integrity. In one study by Solomon, Necheles, Ferch, and Bruckman,
(2007), parents were encouraged to engage their children in floortime for at least 15
hours per week after receiving intensive one-day training. Parents could choose to set
aside time for daily structured floortime with their children or apply the floortime
principles to time naturally spent together such as during meals, children's baths, or
bedtime. Measures were taken using the Functional Emotional Assessment Scale
(FEAS), which subscales in both the child and parent domains measure regulation,
attachment, behavioural organisation, representational elaboration and emotional
thinking. Results showed that 45.5 % of children made good to very good functional
developmental progress, but there was no change noted in the parental domain from
pre to post intervention, suggesting that parental appraisals of child behaviour
remains unchanged by the intervention.

51
 The Floortime approach of Greenspan and associates (Greenspan and Wieder,
2006) has a theoretical foundation related to the connection between affective
development and the development of skills in other areas which is not exclusively
specific to autism. This emphasis on individualisation rather than a standardised,
tightly manualised approach has meant that no rigorous empirical studies on
Floortime have been published in peer-reviewed journals.

4.6 Son-Rise
The Son-Rise Programme (SRP) (also known as the Options programme, in
the UK) was developed by the parents of a boy (Raun) with autism in the early
1970s, who provided one-on-one intervention (child-adult dyads), in a distraction-
free, naturalistic environment (Kaufman and Kaufman, 1976). The success of the
approach prompted the family to establish a commercial enterprise called the Option
Institute, which is why the programme is also referred to as Options. The approach is
intended to promote spontaneous, child-initiated social interactions, with following
the child’s lead being core to the approach. All social interactions and subsequent
prompting by an adult occur only after the child initiates interaction with a
communicative act such as head orientation and/or eye- contact, a gesture or
verbalisation. An important corollary of following the child’s lead is contingent
imitation, i.e. imitating (or “joining”) the child’s activities or movements, which has
been shown to increase social-communicative behaviour when used as part of
developmental interventions Lewy and Dawson, (1992).
The Son-Rise programme is normally delivered by parents and volunteers in
the family home, once the parents have received training from the Options Institute.
One adult at a time works with the child with autism, usually in a special playroom
which parents are advised on how to develop within the family home, and is
conducive to offering the child objects of interest that may engage their attention by
developing the relationship through interaction the adult is able to use the child’s
own motivation to teach new skills based around the child’s interests. The adult may
have to learn to communicate with the child in a way that suits the child. For
example, they may need to vary the pitch and level of their voice or restrict their
language so that it is easier to understand. So the adult may say ‘Dinner?’ rather than

52
‘Do you want some dinner?’ The approach also requires the adult to make eye
contact at every possible opportunity because it is felt that the more a child looks, the
more they learn.
The evidence for the approach is generally limited to anecdotal accounts,
which on the whole are fairly positive and originate from both parents and
professionals alike (Kaufman, 1994). However, in the development of this thesis the
author carried out a review of the literature discussing parent-mediated interventions
and was unable to find any scientifically valid or reliable research trials that
evaluated the SRP approach. In addition, in her evaluation of SRP, Williams (2006)
found that although it proved possible to produce a profile of intervention use,
findings indicated that the programme is not always implemented as it is typically
described in the literature, raising questions as to how the intervention can be
properly evaluated.

4.6.1 Problems with Son-Rise

There have been a small number of case studies published on the use of the
SRP and some families have reported that it has helped them develop a more positive
attitude towards their child’s disability (Kaufman, 1981; MacDonald and MacDonald
1991). However, the potential demands which implementation of the programme
may place on families have also been documented and studies have shown that the
demands of implementing the programme can increase parental stress (Jordan and
Powell 1993; Lynch 1998). In their longitudinal questionnaire-based study of the
Son-Rise Programme, Williams and Wishart (2003) explored a number of potential
positive and negative effects for the family and how these changed over time in
relation to child characteristics and how the programme was implemented. In
assessing the impact of the programme they found more drawbacks to intervention
than there were benefits with a significant impact upon parent-child relationships.
Moreover, the study found that over time parents began to form negative views of
their child with autism due to the demands which the programme made, resulting in
potential disruption to child parent bonding.

53
4.7 TEACCH (Treatment and Education of Autistic and related
Communication-handicapped Children)
TEACCH is a clinical service and professional training program, based at the
University of North Carolina. The TEACCH approach is called ‘‘Structured
Teaching” and it combines both behavioural and developmental approaches.
Structured Teaching is based on evidence and observation that individuals with
autism share a pattern of neuropsychological deficits and strengths that TEACHH
refers to as the ‘Culture of Autism’ (Mesibov, Shea and Schopler, 2005), and
includes the following characteristics:

1. Relative strength in and preference for processing visual information (compared to

difficulties with auditory processing, particularly of language).
2. Heightened attention to details but difficulty with sequencing, integrating,
connecting, or deriving meaning from them.
3. Enormous variability in attention (individuals can be very distractible at times, and
at other times intensely focused, with difficulties shifting attention efficiently).
4. Communication problems which vary by developmental level but always include
impairments in the initiation and social use of language (pragmatics).
5. Difficulty with concepts of time including moving through activities too quickly
or too slowly and having problems recognising the beginning or end of an activity,
how long the activity will last, and when it will be finished.
6. Tendency to become attached to routines and the settings where they are
established, so that activities may be difficult to transfer or generalise from the
original learning situation, and disruptions in routines can be uncomfortable,
confusing, or upsetting.
7. Very intense interests and impulses to engage in favoured activities and
difficulties disengaging once engaged.
8. Marked sensory preferences and aversions.
(Mesibov and Howley, 2003)

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4.7.1 Mechanisms of structured teaching
The essential mechanisms of Structured Teaching are (a) structuring the
environment and activities in ways that are understandable to the individual; (b)
using individuals’ relative strengths in visual skills and interest in visual details to
supplement relatively weaker skills; (c) using individuals’ special interests to engage
them in learning; and (d) supporting self-initiated use of meaningful communication
(Sheehy, 2001).

4.7.2 Parent as therapist

A main focus of the TEACCH programme is to teach parents how to assess
and implement individualised supports for their child, with TEACCH centres
providing parents of children of all ages opportunities to learn these strategies in 4 to
8 weekly sessions supervised by staff in the clinics. As such, the TEACCH approach
does not make any distinction between parent and therapist. Parents are trained to
deliver the approach at home in the same way that teachers are taught to deliver the
approach in a school setting. The only empirically evaluated study of parents as
therapists using the TEACCH approach is that by Ozonoff and Cathcart (1998), who
implemented the TEACCH programme by training a group of 11 parents of children
with autism aged 2- 6 years to implement the programme at home. This was
achieved by one therapist working directly with the child, demonstrating tasks and
modelling teaching skills to the parent, the parent watched on from behind a one-way
mirror with another therapist, who explained the techniques in detail and provided
emotional and other support. Following this observed session specific activities and
methods were written down in a formal programme by the therapists and sent home
with parents for implementation. During the following week, parents were
encouraged to spend half an hour per day working with their child in the home, using
the same materials and techniques as in the clinic session. Upon their return to the
clinic a week later, they demonstrated to the therapists what they had been doing at
home, while therapists provided suggestions for fine-tuning and modifying activities
as needed. The mean number of treatment sessions lasted 10 weeks. Children in the
treatment group reported significant improvement in cognitive and academic skills

55
relative to a control group of 11 parents who were on a waiting list protocol.
However, the study ignored parental variables and there was no overall assessment
of parental characteristics.

4.7.3 Problems with TEACCH

Whilst the TEACCH programme represents a ‘model’ for therapists and
families, research has been critical of its lack of consideration of different social and
family contexts (Panerai, Ferrante, and Zingale, 2002). In his study following 15
children from waiting list through treatment period, Short (1984) noted during home
observation that TEACCH did not make any adaptations for the demands on parents
becoming therapists and that parental stress did not improve as a result of the home
based programme. Moreover, Howlin (1997) raised concerns about the influence
that staff member skills and experience may have on intervention outcomes with
there being variability of the delivery of the programme due to the relative
experience and knowledge of the TEACHH staff member coaching the parent.

4.8 Chapter Summary

There are currently no parent-mediated interventions for families of children
with autism where the primary focus is on parental stress reduction. With the
exception of SSTP (which has a very limited evidence base) all other interventions
focus on teaching parents how to deliver programmes to their child where the
acquisition of skills is the primary focus. In doing so, these interventions negate the
burden on parents of delivering their approach and pay little attention to the role of
parental stress. The five approaches outlined above exemplify this point. The focus
of intervention on improvement in symptomology in the child with autism has
yielded very little in terms of evidence, a report from the Autism Task Force in
Maine, U.S. (2000) illustrates this point. It concludes that there is no peer reviewed,
scientific evaluation for treatments such as Floor time (Greenspan, 1998), that the
Son Rise Program (Kaufman, 1997) is ‘‘without scientific evaluation of any kind’’,
and that the existing evidence for the effectiveness of TEACCH is ‘‘inadequate’’.
This narrow focus of intervention has led to significant gaps in our understanding of

56
what happens to parents who adopt parent-mediated intervention and has had little
impact on the well-being of families as a whole.
Prizant and Rubin (1999) suggest that to achieve greater generalisation and
maintenance of skills the knowledge base for intervention programmes should be
derived from a combination of different sources, including theory (developmental,
learning, family systems etc), clinical and educational data, and knowledge about
best practice and should be implemented in an approach that is family centred.
Moreover, Marcus, Kunce and Schopler (1997) contend that the development of
management strategies that can be implemented consistently but in ways that do not
demand extensive sacrifice in terms of time, money or other aspects of family life,
seem the most likely to offer benefits for all family members.
Osborne et al. (2008) examined how parenting stress counteracted the
effectiveness of early teaching interventions, their study found that early teaching
interventions produce fewer gains when parents report high feelings of parenting
stress, especially when the teaching intervention had a higher time-input (Osborne et
al., 2008). It is also important to note that higher levels of parenting stress may
influence parenting behaviours, which in turn can affect the child’s outcomes.
In contrast to the approaches outlined in this chapter, the intervention
developed within the thesis places emphasis on the development of knowledge and
understanding within parents. The design of the intervention draws on the evidence
that parental stress is influenced by how parents appraise their child’s behaviour and
the meaning that this holds for them. This is a radical departure from what has
largely been held up as the standard model of parent-mediated intervention, as it does
not necessarily require any observation or direct work with the child or the parent
interacting with the child. Moreover, there is no requirement placed upon parents to
deliver a programme within a prescribed framework or measure success based on
criteria that is linked to child behaviour or the acquisition of skills.

57
Chapter Five
Hypotheses and Potential Components of a Parent Mediated Approach
Hypotheses of the study

Hypothesis 1. It is predicted that parental stress related to child

characteristics would reduce resulting from the intervention.

Hypothesis 2. It is predicted that parental stress related to parent

characteristics would reduce resulting from the intervention.

Hypothesis 3. It is predicted that parental coping styles would change as the

intervention allows parents to explore their own coping resources when considering
behavioural change.

5.1 The Value of Parent-Mediated Approaches

The World Health Organisation’s International Classification of Functioning,
Disability, and Health framework highlights the significance of environment health
and well-being and the important relationship between the health of parents and the
child (World Health Organisation, 2001). This follows a paradigm shift in health care
service delivery away from child-centred models focusing primarily on treating the
child’s disability towards more family oriented services and family-centred well-
being (Rosenbaum, King, Law, and Evans, 1998). As posited by Brehaut et al.
(2004), family-centred policies and services that put into consideration the health of
caregivers are expected to benefit the wellbeing of both caregivers and their families.
This philosophical position has been adopted in the Scottish Government strategies
The Carers Strategy for Scotland (2001- 2015), and the Scottish Strategy for Autism
(2011). In their Cochrane Review of parent mediated interventions for young
children with autism, Diggle and McConnachie (2009), explicitly state the value of
involving parents within programmes, specifying that home based intervention not
only increases the development of relevant skills, in the child but also supports the
development of parental confidence. In addition, the impact of parental well- being
on child behaviour, is well established within the literature and several studies have

58
noted improvements in the children’s behaviours resulting from reductions in
parenting stress (e.g., Bitsika and Sharpley 2000; Engwell and Macpherson 2003;
Harris, Handleman, Arnold and Gordon, 2000; Lovaas and Smith 2003). However,
despite this evidence and the changes in public health perspectives, parent-mediated
interventions for parents of children with autism continue to focus on training parents
to attempt to reduce the behavioural symptoms of autism in their child. Moreover,
with the exception of the SSTP approach described earlier, almost all parent-
mediated interventions are exclusively aimed at parents of young children with little
consideration of parents of children of late primary or secondary school age.

5.2 A Psycho-Educational Approach

This study utilises a psycho-educational approach to address the stress
experienced by parents of children with autism. Anderson (1980) is generally
credited for the development of psycho-education as an intervention for individuals
experiencing psychological distress. In her work with patients with schizophrenia
Anderson developed the psycho-educational approach to address issues of expressed
emotion in families as an adjunct to other treatments. Her work demonstrated that by
combining education about mental disorder with an enhanced understanding of the
psychological issues within the family, the impact of psychological constructs such
as expressed emotion can be reduced.
Core to psycho-educational principles is the notion that education has a role
in emotional and behavioural change. With an improved understanding of the causes
and effects of the problem, psycho-education broadens the person’s perception and
interpretation of the problem, and this refined view positively influences the
individual’s emotions and behaviour. The intervention in this thesis aims to develop
parental understanding of their child’s behaviour educating them about the
underlying cognitive issues faced by children with autism, and the impact that has on
child behaviour. By doing so it is hoped that the intervention will positively
influence parental views of behaviour which they have found challenging. In
addition, the intervention teaches parents that by understanding the function and
meaning behind their child’s behaviour they can use the behavioural technologies of

59
Positive Progamming to enable their child to have their needs met in socially valid
means.

The following sections in this chapter provide an overview of the conceptual

areas that have been adopted within the educational and psychological components.

5.3 Parental Understanding as a Component of Intervention

The perceptions and expectations that parents have of their child’s behaviour
influence the type and styles of parent–child interactions (Marfo, 1984; Mahoney,
O'Sullivan, and Dennebaum, 1990). Moreover, higher levels of stress experienced by
parents of children with autism may result in less positive parental perceptions of
their children (Forehand, Wells, and Greist, 1980) and negatively affect the quality
of early parent–child relations (Baker, Landen, and Kashima, 1991). Given that
parents of children with and without developmental disorders routinely assign
meaning and intentionality to their child’s behaviour (Bugental, Blue, and Cruzcosa,
1989; Dix, 1993; Dix, Ruble, and Zambarano, 1989; Feldman and Reznick, 1996;
Walden, Urbano-Blackford, and Carpenter, 1997), it seems reasonable then to
suggest that an important part of any intervention should be an understanding of the
causes of behavioural presentation which in turn influence parent perceptions and
interpretations.
As discussed earlier, knowledge can be seen as causal attributions that
interact with meaning within the appraisal process of a stressful encounter to predict
emotional outcomes (Lazarus, 1991). Therefore, in developing parental knowledge
of their child’s disability, intervention can influence how parents derive meaning
when being confronted with difficult situations by their child with autism. A key
outcome for both Floortime and Son-Rise is that parents derive meaning from their
child’s behaviour and use that as a basis of interaction. Within both approaches
parents are encouraged to appraise behaviours such as repetitive movement not as
behaviours’ that must be reduced, but rather opportunities to develop interaction.
Similarly, the developmental components of the TEACCH programme aim to
develop therapist and/or parent understanding of certain behaviours as being linked
to the core deficits in autism and their uneven profile of development. While

60
TEACCH does not prompt parents to use certain behavioural presentations for
interaction in the way that Floortime or Son-Rise do, it does aim to develop parental
understanding of why their child may present in unusual, repetitive or pedantic ways.
Proponents of the TEACCH approach believe that parent training through education
can achieve the following: (1) the enhancement of parents’ psychological resources,
by strengthening self efficacy and sense of coherence (2) the enhancement of social
resources, by learning from other parents how to use community supports; (3) the
enhancement of behavioural coping skills, specifically by acquiring parenting
strategies and skills; (4) the strengthening of adaptive emotional coping abilities
when discussing emotional experiences regarding the child with other parents,
possibly resulting in the reappraisal of stress and demands; (5) the enhancement of
family adaptive functioning, in terms of reduced parent stress, strengthened parent
health, and improved parent-child relationships (Marcus, Kunce and Schopler, 2005).

5.4 Positive Programming

Positive programming (PP) or Positive Behaviour Support strategies such as
those described by Donellan, La Vigna and Negri-Shoultz (1988), have been shown
to be effective in curbing the impact of many challenging behaviours associated with
autism and learning disability (Horner et al., 2005). While PP shares its’ theoretical
origins with ABA, it differs in that its overall aim is the application of behavioural
approaches to social problems that limit the child’s ability to access community
resources. A signature of the PP approach is its committed focus on fixing
environments, not people (Biglan, 1995).
Positive Programming utilises behaviour technologies that examine the
meaning of the behaviour to the person and then seeks to identify more socially valid
means of having that need met. For example, a PP approach to self-injurious
behaviour in a child with autism may be to observe in which context the behaviour
presents and identify the function of the behaviour relative to the context. Once the
function has been identified the PP approach advocates teaching the child an
alternative and socially valid means of having that need met. There is a strong
evidence base for the behavioural technologies employed by PP as they share their
origins with ABA. Methods such as shaping, fading, chaining, prompting, and

61
reinforcement contingencies as well as a wide array of procedures for reducing
problem behaviour are employed within the approach (Sulzer-Azaroff and Mayer,
1991). The concepts of setting event and establishing operations, and the notions of
stimulus control, generalisation, and maintenance (Chance, 1998; Miltenberger,
1997) are adapted from the behaviourist literature for use in natural community
settings to inform intervention strategies, and define what constitutes a successful
outcome (Carr, 1997)

5.4.1. PP and its use with Parents

Rather than teaching parents to deliver discrete trials or behavioural protocols
repeatedly for many hours a week the PP approach advocates observation and
measurement of behaviour to identify its meaning and then to provide alternative
means of reinforcement that meets the child’s needs (Iwata, Dorsey, Slifer and
Richman, 1982). This teaching of functional equivalence is central to PP and
reinforcement is used as a means of shaping behaviour, rather than eliminating it.
The PP approach to challenging behaviour does not assert that it can resolve all
behavioural issues, nor does it define any single methodology (Horner et al, 1990).
Instead the approach advocates a group of behavioural techniques which are “non
aversive” in nature (Horner et al., 1990) and which should be used as part of holistic
supports that allow the individual to have their needs met and promote community
inclusion (Durand, 1988). In describing how PP may be used clinically, Anderson,
Russo, Dunlap, and Albin, (1996) outline how collaboration is central to case
formulation, goal setting, intervention selection, and on-going programmatic change
made within a collegial and egalitarian model of operation. Thus, rather than have a
prescriptive training programme which does not take account of individual
differences and context, advocates of the PP approach define meaningful training as
involving in vivo problem solving within real-life such as the family home or service
(Anderson and Adams, 1996).

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5.5 Motivational Interviewing
Motivational interviewing (MI) is an egalitarian, empathic intervention that
adopts specific techniques and strategies, such as reflective listening, shared decision
making, and agenda setting. A primary aim of motivational interviewing is to assist
individuals in working through their ambivalence about behaviour change. This
approach appears to be particularly effective for individuals who are initially less
ready to change (Miller and Rollnick, 1991). The use of Motivational Interviewing in
facilitating behaviour change in patients is well documented in areas concerned with
addiction and chronic illness such as asthma, diabetes and coronary heart disease
(Barnett, Monti, and Wood, 2001; Monti et al., 1999; Stott, Rollnick and Pill, 1995;
Knight , McGowan, Dickens and Bundy 2006).

5.5.1. MI Technologies and Strategies

The technologies and strategies involved in MI are designed to complement
the spirit of the approach which is the context or interpersonal relationship within
which the techniques are employed (Miller and Rollnick, 2009). Therefore, the
strategies and tools which MI utilises focuses on supporting the client with resolving
their issues of ambivalence and promoting confidence to address behaviours they
have appraised as challenging (Rollnick and Miller, 1995). There are five early
methods within the MI approach commonly referred to as “OARS” which are
designed to help clients explore and resolve their ambivalence about making changes
and are outlined below:
Five Early Methods (Miller and Rollnick, 2002)
• Open Questions: Using questions that cannot be answered with one word.
This keeps the focus broad and invites clients to explore topics extensively. Open
questions are viewed as door openers, providing opportunities to use other early
methods. Over-reliance on questions, even open questions, is discouraged.
• Affirming: Voicing support for the client’s strengths and personal efforts,
within the context of societal and cultural norms. This increases the client’s
confidence and self-efficacy.

63
• Reflective Listening: Responding to what the client says in a way that
conveys understanding of the client’s feelings or the meaning of the client’s
statements. This is considered to be one of the most important and sophisticated
skills in MI; it includes paraphrasing what the client said, or guessing about the
emotional impact on the client. Reflective listening is used to test the accuracy of the
therapists understanding. It is used to explore both sides of a client’s ambivalence
and is used to reinforce change talk.
• Summarising: Using longer reflections to summarise what the client has
discussed over a period of time. This is often used to reinforce important parts of the
discussion, to link ideas with previous discussions, or to suggest a transition to
another topic.
• Methods for Evoking Change Talk: A variety of strategies are used to elicit
“change talk” from the client. Change talk includes statements supporting or
indicating desire for change, ability to change, reasons for making a change, and
reasons not to stay the same. Strategies include but are not limited to eliciting from
the client discussions of personal values, goals, strengths; the “good and the not so
good” ideas about changing or not changing; and looking forward or backward to
compare life with and without changes.
As the client grows in confidence MI advocates the use of strategies that
enhance the identification of behaviours that the client can address relative to the
importance and meaning to the client, and the degree of confidence the client has in
being able to make change. One commonly used strategy is Rollnick’s or the
Importance ruler (Butler et al., 1999; Rollnick, Mason and Butler, 1999). Figure 4
below illustrates how it can be used with clients in identifying and addressing
specific behaviours.

Figure 4 Rollnick’s Ruler (Rollnick, Mason and Butler, 1999)

64
 Clinicians typically open with the importance ruler (Figure 4), by asking
“How important is it for you right now to change [target behaviour]? On a scale of 0
to 10, what number would you give yourself?” Clients then provide a number (X).
The next questions follow, “Why are you at X and not at 0?” and “What would need
to happen for you to get from X to X + 1 or X + 2?” Once the importance of change
has been explored in this manner, the conversation can shift to questions regarding
self-efficacy or confidence around change, using the confidence ruler. “If you did
decide now to change [target behaviour], how confident are you that you could do
it?” clients again provide a number (X). And clinicians follow with the same
questions as before: “Why are you at X and not at 0?” and “What would need to
happen for you to get from X to X + 1 or X + 2?”

5.5.2. MI Parent child interaction

More recently, clinicians have thought to extend this approach where
behaviour change has focused on both child and parental behaviours (Resnicow,
2002). In their recent study of parents of children with schizophrenia (n=53), Keet et
al. (2012) found that MI was effective when used with parents to address cannabis
use in their adolescent children. The researchers noted that those parents who
received MI felt more confident in addressing behaviour and demonstrated increases
in self-efficacy following intervention. Many parents of children with physical
disabilities and chronic health conditions experience a sense of doubt and limited
efficacy in shaping their son/daughters behaviour (Berg-Smith et al., 1999). Some
studies have highlighted parents’ feelings of resistance to implementing behavioural
change as a result of lack of confidence in the process, and in their own abilities
(Resnicow, 2002; Bristol, 1984).
Earlier in chapter 3, this thesis discussed the role that locus of causality plays
in the appraisal process and ultimately what emotions would be experienced as a
result of that causality (cognitive-motivational-relational theory). If MI allows
parents to identify those behaviours, which they feel they can exert influence on for
the benefit of the child and the family unit, then it will influence the appraisals

65
formed by parents. If the parent is successful in their efforts then this will in turn
affect future appraisals of child behaviour. Within this framework it would seem that
MI may offer a potential mechanism for the parent to form appraisals and ultimately
develop healthy coping styles relative to context, child behaviour and parental
perceived control.

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Chapter Six
Methodology
6.1 Rationale
The aim of this study was to assess the impact of a psycho-educational
intervention designed by the author for parents of children with autism. Many other
interventions ignore parent characteristics and focus on observable change in child
behaviour. In contrast, the psycho-educational intervention evaluated in this study is
exclusively concerned with parental appraisals of their child’s behaviour in the
context of day-to-day interactions. The Transactional Model of Stress and Coping
(Lazarus and Folkman, 1984) describes the dynamic process of the stress transaction
and has been used to describe the stressful experiences of parents of children with
autism (Hastings et al, 2005). This model of stress and coping, as well as the aim of
the study to intervene with parental appraisal of their child’s difficult behaviour and
the resulting stress, has underpinned the choice of measures.

6.2 Participants
6.2.1 Recruitment
Parents were recruited from three local authority areas in Scotland
(Edinburgh City, Aberdeenshire and Falkirk). These local authority (LA) areas were
identified as they represented a mix of remote rural, accessible rural, accessible small
town and large urban area (Scottish Government, 2009), were within travel distance
from National Autistic Society (NAS) offices and had expressed interest in the study
when it had been proposed at a national forum1.
The Study was given a grant of £125,000, which was the maximum grant that
could be provided from the Scottish government health group and which would
allow for the parents of sixty one children to participate. The three participating LAs
identified a liaison person2 who distributed participant recruitment letters (appendix
1, p.125) to the households of children with autism within the LA area and who were
identified on a shared Education, Social Work and Health database.
1
This was an event jointly organised by Strathclyde University and the Scottish Government for the launch of the Autism Toolbox for all schools in Scotland and at which
most of the LA’s in Scotland were represented
2
The liaison person was a senior manager within Education Department of the local authority who either had a remit for autism or additional support needs and who was
able to liaise with and inform other statutory agencies such as Social Work and Health as to the nature of the study.

67
All three LAs reported having this system of tracking children diagnosed with an
autism spectrum disorder, and recruitment letters were forwarded to the LA liaison
person to forward to parents in their area with a stamp addressed envelope enclosed
to return to the LA liaison person. The LA liaison person then forwarded these on to
the author. Table 1 below shows the number of responses from each LA area and the
number of participants selected to take part in the study representing 20 families
from each respective LA area.

Table 1: Number of respondents, and numbers selected

Aberdeenshire Edinburgh City Falkirk
Number of N=55 N=35 N= 23
respondents
Number Selected N=25 N=27 N=21

Participants were selected from respondents using a simple random sampling

technique involving assigning each individual or pair of individuals (if they were
from the same family), a number that was then drawn from a hat. For those selected
a letter providing information about the study (appendix 2, p.126) and a letter of
consent (appendix 3, p.128) was issued prior to attending the first workshop. In
addition, those who had responded but were not selected were written to (appendix 4,
p. 129) informing them that that they had not been identified by the random sampling
technique, but that their names would be passed on to the LA liaison person who
would keep them informed of any future parent programmes. Of the seventy three
consent forms which were sent out to the selected participants, seventy one were
completed and returned, making the overall number of final participants seventy one.

6.2.2 Inclusion/Exclusion Criteria and Issues with a Control Group

Inclusion criteria
Parents of a school aged child with a primary diagnosis of autism where the
child is living at home, where the parents are not currently engaged in any other

68
home based programme, and where the parents are not engaged in any talk based
intervention to assist with stress, anxiety or depression.

Exclusion Criteria
Parents were excluded from the study if their child was attending a residential
service (excluding respite), parents who are currently in receipt of counselling or any
talk based intervention for the treatment of stress, anxiety or depression or where
they are currently engaged in any home-based or parent-mediated intervention.

Control Group
This study received funding from the Scottish Government to investigate
whether the approach described could be of assistance in reducing stress in parents.
There were certain parameters set out in the funding agreement that have placed
limits on the methodology. One of these was the timescale in which the money was
to be used and feedback provided to the Government. The timescales laid out was
that of 18 months. A significant limitation of the study is the lack of control group.
While a waiting list control group would have been the ideal conditions under which
to carry out the research this was not possible within the time frames provided.
Moreover, neither those recruited to conduct motivational interviewing with the
families nor myself were freed up from our full time positions to carry the work out.
During the period of the study and the write up we were still in our substantive posts
placing further limitations on what could be achieved.

6.2.3 Participant Characteristics

The sample comprised 71 parents of children with autism from three local
authority areas in Scotland. Of the 71 parents who participated in the study 86%
(n=61) were female and 14% (n=10) were male. Parents were defined as either the
biological parent of the child or the partner of the biological parent of the child

69
residing in the family home with the parent a summary of marital status of parents
participating in the study is set out in table 2 below.

Table 2 Marital status of participants

Marital Status Number Gender

Married 35 Female
Married 5 Male
Single 5 Female
Divorced 18 Female
Co-habiting biological 3 Male
parent of child
Co-habiting biological 3 Female
Parent of Child
Co-habiting no relation 2 Male
to child

Table 2 above shows the marital status, sex and relative number of
participants selected for the study. Table 3 below shows the numbers and gender of
those who were participating with their partner.

Table 3 Participating with partner

Gender Participating with Partner Participating on own

Male 10 0

Female 10 51

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6.2.4 Child Characteristics
Participants were not asked to disclose their ages for the purpose of the study.
However, child ages were recorded as part of the procedure for administering one of
the measures. Child ages ranged from 6 to 12, table 4 below shows the relative
number of children for each each age.

Table 4. Child Age

Child Age Frequency
6 5

7 11

8 13

9 13

10 7
11 8

12 4

Of the 61 children represented 85 % (n=52) were boys and 15% (n=9) were girls.
The eldest boy was 12 years of age and the youngest boy was 6. Within the girls, the
eldest was 11 years of age and the youngest was 8.

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6.3. Procedure
6.3.1. Ethical Issues
The research was approved by both the Queen Margaret University and
National Autistic Society Ethics Committees. Data were anonymised by using a
numerical coding system to represent individual participants. The numerical coding
was carried out by an administrator who had been funded for 5 hours per week to
assist with the study. The administrator had no contact with any of the participants
or with the local authority representatives. Encoded cases and anonymised
questionnaires were passed onto the researcher for scoring and data analysis.
Completed questionnaire and notes were held within a locked filing cabinet that only
the researcher had full access to. Family facilitators had access to the notes
pertaining to the parents they were directly supporting. Numerical data was entered
into an SPSS file that was held on one computer and the file was password protected.

6.3.2 Development of Workshops

The workshops and parent manuals were developed prior to the recruitment
of participants. Workshops had to provide parents with knowledge and skills that
could influence how they appraised their child’s behaviour and identify any
behaviours that they felt they could address. Moreover, as different parents will
form different appraisals of their child’s behaviour it was considered that strategies
described within the workshops should be flexible enough to accommodate the
different experiences of individual family systems, be able to draw upon the
resources of family members, and be adaptable for use within a home setting. In so
doing, the intervention encouraged parents to develop strategies that they felt
appropriate for managing behaviour within the context of their family. Given the
considerable debate regarding the efficacy of any specific approach or intervention in
managing problem or difficult behaviour of children with autism (Campbell, 2003),
the SIGN guideline Assessment, diagnosis and clinical interventions for children and
young people with autism spectrum disorders (SIGN, 98) was used as a reference
point which influenced some of the approaches that may be of use to parents in
managing difficult or challenging behaviour. The guideline recommends that
behavioural interventions should be used to address a range of behaviours and reduce

72
their impact in terms of severity and frequency. The guideline grades this
recommendation as a Grade B, meaning, “that there is a body of evidence to support
this” (SIGN, 98), including high quality systematic reviews. As such, Positive
Programming or Positive Behaviour Support (discussed in the previous chapter),
with its emphasis on social validity was identified as a framework to introduce to
parents that they may find useful in interpreting and addressing child behaviour.
Workshop One
The content of workshop one3 (appendix 5, p.130) was as follows;
Understanding autism as a neuro-developmental disorder
• What is autism?
• What is a developmental disorder?
• What is the Autism Spectrum?
• What are the main theories of differences in thinking styles?

The Meaning of Behaviour

• What is the function of behaviour?
• How can we analyse behaviour?
• What influences/reinforces behaviour?
• How can we shape behaviour?

A very simple tool for assessing parental knowledge was developed, to be

delivered in the style of a quiz 4(appendix 6, p.131). The quiz was developed to “de-
bunk” myths regarding autism while developing parental understanding of the
concept of developmental disorder and how that relates to the behaviours observed in
children with autism. The quiz was to be issued to participants at the start of the
workshop, with the delivery of answers forming part of a discussion that would
encourage parents to share their experiences of their child’s behaviour and the
uneven profile of cognitive development, characteristic of autism. The quiz was also
used to ensure that all parents were at the same starting point for the rest of the day

3
The slides in the workshop were used as a focus of discussion, much of the teaching related to practical examples from
the author’s own experience
4
While facilitating parental knowledge the quiz was also used as an icebreaker at the start of the workshop following
introductions

73
and the questions covered within it related to the slides, which were about to follow.
The link between common behavioural symptomology expressed in individuals with
autism and their uneven or “spikey” cognitive profile was linked through illustrations
of behaviour of developmentally and cognitively young children. Many practical
examples were built into the delivery of the programme that demonstrated this link
and parents would be given scenarios which contrasted typical approaches to those
which considered the cognitive styles of children with autism. Through facilitated
discussion participants were encouraged to discuss the changes they had observed in
their children from infancy through toddlerhood and into childhood. It was hoped
that parents would provide examples of differences in development between their
child with autism and other children in the family as this would provide an
opportunity to contrast and discuss the different trajectories of development that is
characteristic of autism. While it was thought that some of the language may be
difficult for parents the author considered it important that parents were familiar with
terms such as theory of mind, weak central coherence and executive function as it
would provide a label to the behaviours they observed in their children.
Assisting parents to identify the function of their child’s behaviour was a
central tenet of the workshop with the notion of shaping behaviour as a means of
intervention providing more realistic outcomes to behavioural support rather than
elimination of challenging behaviour. It was thought that this would challenge many
parent’s thinking as it would require them to review how they are currently
managing behaviour and what meaning they have given their child’s difficult
behaviour. An overall aim of the Parent Programme was to change parental stress,
which was derived from child characteristics such as their challenging behaviour.
Therefore, the entire afternoon of workshop one focused on interpreting meaning,
giving examples from the author’s experience and also encouraging parents to voice
their own experiences and what meaning they had given to previous episodes. As
such the workshop was designed to have the following key concepts as desired
learning outcomes for parents: functional equivalence5 (the ability to derive the same
satisfaction from a replacement activity that is more socially valid), antecedent
control (the controlling of events or identification and removal of stimuli that would

5 This relates directly to the literature on positive programming

74
otherwise cause distress) and reinforcement of desired behaviour (the provision of
reward for behaviour which is socially appropriate).
Punishment and consequence are often associated with parenting styles in
western culture, as are styles which can be overly permissive (Greenwald, Bank,
Reid, Knutson, 1997). Therefore the use of appropriate discipline with children is
often the source of much stress within families (Woolfson, and Grant, 2006).
Irrespective of disability it is typical that parents may respond to the behaviour of
their child in a manner influenced by culture, their own childhood, the views of
parents and peers, and the experience of raising other children. The workshop was
designed to explore parental views of discipline by using behavioural scenarios to
prompt discussion. Moreover, by airing their views on how they would address
behaviour the workshop hoped to address parental misconceptions that children with
developmental disorder would consistently respond to consequence orientated
approaches in the same manner that typically developing children would.
The role of parental discussion and parent experiences was thought to be
highly important in the delivery of the workshop and it was felt that the workshop
should end with parents summarising their own learning. To facilitate this, the final
slides engaged parents in an activity that encouraged them to think of behaviour in its
broadest sense and rather than just having to respond to behaviour which is
challenging. To that end the workshop concluded with an activity that encouraged
parents to assess the meaning of their own behaviour, reinforcing the point that all
behaviour, challenging or not has meaning.

Workshop Two
The content of the workshop 2 (appendix 7, p.132) was as follows:
Attention
• The nature of attention
• What we attend to
• Shifting our attention
• Joint and shared attention
• Competing attention
• Demands on attention

75
 • Differences in attention
Sensory/Perceptual Differences
• The nature of the senses
• Touch, Taste, Vision, Auditory, Vestibular, Proprioceptive
• The Sensory Diet
• Equivalent behaviours and the senses

The author has noted that when delivering parent workshops in the past, an
area which parents have expressed seeking additional support with, and sought
greater understanding of, has been sensory processing issues, particularly as they can
be related to ritualistic and obsessional behaviour which parents find hard to relate to
and manage (Happe, 2005). It was felt important that parents would be able to link
the learning between the two workshops and so workshop two made significant
reference to the meaning behind behaviours linked to attention and sensory
processing.
In considering the content of workshop two the author considered the
abstractness of some of the learning. The learning was framed in the context of
comparing typical attentional and sensory/perceptual processes with the observed
behaviours in children with autism. Learning outcomes for parents included:
understand that children with autism do not attend to things in a typical way and that
the things which they attend to often seem atypical, understand that children with
autism will have differences in how their attention shifts and how long they can
attend to a task, understand that children with autism will have difficulty filtering out
un-necessary information and sensory stimuli, understand that as human beings our
brains make sense of the world by how we organise our senses, understand that
depending on the importance of stimuli our brains will prioritise different sensory
modalities, understand that pain is both a physical and psychological process,
understand that children with autism experience sensory stimuli in an atypical way
and that this will have implications for their behaviour, understand that by
appreciating the sensory differences experienced by children with autism we can
meet their sensory needs by creating a sensory diet that can be implemented in a
naturalistic way.

76
 The learning was to be supported by the use of video clips from you tube6,
specifically these involved; a clip on the “McGurk Effect” (McGurk, and
MacDonald, 1976), which demonstrates how the senses are organised and that one
sensory modality will override the other relative to the meaning the sensory input has
to the person; a clip on the “Rubber Hand Illusion” (Botvinick, and Cohen, 1998),
which demonstrates how our senses are linked to our proprioceptive awareness, and
a clip from the popular TV show “House” which showed how the pain experienced
in “Phantom limb” is an illusion. The point of these illustrations was to show parents
that the senses are a complex set of experiences and we should not ignore their role
in influencing human behaviour. In addition, and to highlight how a sensory diet
may work, a set of toys including squeezy balls, lights, bubble tubes, switches,
chewy tubes were to be distributed amongst the parents and shown how they may be
used to create a sensory diet. A fictitious child was to be discussed and a sensory
diet developed given the child’s sensory needs and how these could be met.

6.3.3 Style of Workshop Delivery

Establishing therapeutic rapport has been noted in improving the knowledge
and understanding of clinicians to the psychological distress of patients (Norfolk,
Birdi and Patterson, 2009). In creating a context where parents felt they could
express their experiences and feel listened to, the author felt it necessary that the
workshops placed a focus on the establishment of trust between the professionals
delivering the intervention and the participants, with the use of empathic listening
and reflective skills being central in developing rapport and shared understanding. To
facilitate the establishment of trust and disclosure within the parent workshop
element of the intervention, it was decided that a set of rules would be a necessary
part of the introduction to the workshop, specifying a need for respect of each others
comments, confidentiality within the room, agreement not to disclose any of the
discussions with any other party outwith the room without first seeking consent, an
agreement that while one person is speaking others will listen and an understanding
that no one person shall be judged on their views irrespective of that view conflicting
with those held by another. The need for such rules would perhaps be particularly

6
You tube was chosen as it does not infringe copyright law and means that parents can watch again in their own time at home.

77
salient for workshops conducted in rural settings where it was understood that
parents were more likely to come into contact with each other on a regular basis in
both professional and social/leisure contexts.
It was envisaged that for the workshops to be effective, parents must feel they
can share their thoughts and emotions regarding the challenges that raising a child
with autism can bring. As such, it was felt that the Humanistic approaches with their
emphasis on self disclosure (Jourard, 1974) offered the most appropriate delivery
style to promote discussion amongst participants. Both Jourard (1969) and Rogers
(1961) place significant emphasis on the establishment of therapeutic rapport by
establishing a sense of equity between therapist and client. By adapting this
approach workshops were to be delivered through the sharing of experience and
providing illustration of behavioural management via scenarios of the
presenter’s/researcher’s own experiences, highlighting both successes and failures
with young people with autism. Moreover, by using experience as a vehicle to
provide information, it was felt that parents would identify more readily with the
learning material and reflect on their own situation and the challenges presented in
caring for their son or daughter. By exploring parental experiences and by placing
close attention to parental discussion, the delivery of the workshops would draw on
early work within the realms of phenomenology and learning (Lewin, 1951), the
workshops sought to engage participants in a dialogue regarding their experience of
managing difficult and stressful situations with their son or daughter.
Given the meaning that parents derive from stressful situations involving
their child it was considered that many of the parents experiences would have a
highly emotive content. The benefit of humour in disrupting negative emotional
states has been evidenced in a number of studies (Dillon, Minchoff, and Baker, 1985;
Szabo, 2003; Abel, 2002) As such it was envisaged that the presenter/ researcher
would use humour extensively in describing his own experiences of supporting
children with autism to engage participants with the material, and also to assist
understanding that some situations require an acceptance that behavioural change
may not be possible. Given the discussion in earlier chapters, on low control/high
stress situations, it was felt that parents were more likely to engage within the

78
workshop when it was demonstrated that highly regarded professionals make
mistakes and accept that some challenging situations cannot be resolved.

6.3.4 Workshop Environment

Physical environments are important in establishing a therapeutic and
informal forum in which to discuss sensitive, stressful and personal issues (Gesler,
1992). In taking consideration of the demands on parental time and the stress that
travel may place on parents with demanding family and work lives, the workshops
were to be delivered within each local authority area. As the researcher had limited
knowledge of suitable venues within each of the three locality areas, the LA liaison
person within each host local authority was asked to identify environments based on
the following: a comfortable environment which was conducive to both presenting
and discussing, an environment which provided opportunities for small break out
areas where, during break periods, parents could have quiet conversations with one
another or with family facilitators, an environment which provided lunch and
tea/coffee in a separate area away from where the presentations were being given.
Identified venues and their resources were then discussed with the researcher
before finalising for agreement. To maintain consistency and predictability, local
authorities were asked to book the same venue for both workshops and funding was
made available via the awarded Scottish Government grant to cover the costs of
venue and subsistence. Aberdeenshire and Falkirk both provided hotels within their
area which offered suitable accommodation, with Edinburgh City providing access to
the Council Chambers and associated rooms with catering.

6.3.5 Development of Manuals

Both manuals (appendix 8, p.133) were designed as an adjunct to the learning
of the workshops and as well as offering use as a centre piece of discussion with the
family facilitators. The manuals were designed to deliberately reflect the content of
both workshops, they developed the scenarios and case studies discussed within the
workshops and provided an overall purpose of reframing parental experiences of
challenging episodes. In so doing the aim of the manuals was to assist parents in

79
developing insight into their child’s behaviour, offering practical advice and
hopefully shifting beliefs from attempting to prevent all behaviours to accepting
those that cannot be changed and identify ones which the parent feels more confident
in addressing, as well as giving practical scenarios of how intervention may be
constructed.
Both manuals made considerable use of appendices which could be used
independently, and which could be photocopied by the parent. There was no
expectation that the material must be used or that it should be used in a sequential
way. Instead the aim of the manuals was to provide parents the option of dipping into
materials at a pace that they were ready for. As such, the manuals were laid out in
such a way that any section could be referred to at any given time.
To make the material as accessible as possible to parents a graphic designer
was employed to illustrate the scenarios and concepts discussed and was consulted
on layout and font size. Illustrations were included to support many of the case
studies used to implement behaviour strategies and caution was used to ensure that
the representation of the children was realistic, while not being overly dramatic. The
examples provided in the manuals were based on the author’s own experiences of
directly supporting children with autism and the approaches he had found to work
using the behavioural technologies and approaches discussed in the manuals.
The readability of the manuals was assessed and an average reading age was
calculated using software available via micro-soft7, the index showed a readability
rating of 63 placing the material in line with a reading age accessible to a typical 13
– 15 year old adolescent. However, it was noted that the reading skills required was
higher in certain aspects of manual 1 where behavioural technologies such as
behaviour recording were discussed. Where technical language was used the index
highlighted that the skills required would be equivalent to those required to read the
New York Times.

7
http://office.microsoft.com/en-gb/word-help/test-your-document-s-readability-

80
6.3.6 Family Facilitators
The family facilitators were employed whilst the manuals were being
developed and several weeks prior to the delivery of the first workshop. The choice
of the name Family Facilitators was to reflect that their role was as a catalyst and
agent of change within the family rather than to directly provide training or direction
to parents on how to implement a prescriptive programme. Family Facilitators were
seconded on a 0.5 basis from their existing posts within the National Autistic
Society, and their salaries and expenses were covered from the Scottish Government
grant provided to fund the study. The author placed an advert in the National
Autistic Society’s internal posts circular, and interviews were held for the posts
during the programme’s development phase. Four facilitators were employed8, 2 had
psychology degrees and were working as assistant psychologists, another had
qualifications in nursery school teaching and was currently working as a classroom
assistant, and the third was a deputy head teacher with teaching qualifications and
additional postgraduate training in additional support needs. This last member of the
team also contributed to the writing of the second manual. . Selection of facilitators
was based on a number of factors which included; good interpersonal skills, good
communication skills, both orally and written, experience of working with children
with autism who can exhibit challenging behaviour, a basic understanding of the
behavioural technologies employed in the study, and empathy and life experience. In
addition, facilitators needed to demonstrate that they had the capacity to listen
without judging and they were all required to provide examples of this during their
interviews.
The programme was designed to provide twenty-one hours of Family
Facilitator support. However, this was not required to always be delivered by face-
to-face contact, except on the first meeting with parents which would be at a place of
the parent’s choosing but was envisaged that it would generally take place at the
parents home. After the initial meeting subsequent meetings could be by email,
telephone or other electronic means, as the sessions could be used in whichever way
was most beneficial to the family in terms of time and medium and would be based
on the preference of the parent/s. In addition, parents were informed that there were

8
This was from a group of 21 applicants

81
no prescribed times of day or time limits set on sessions, but simply that there was an
overall time allocation of 21 hours. The twenty-one hours of Facilitator time did not
include travel time and it was envisaged that due to the distances involved with some
of the Aberdeenshire families that some overnight stays may be required. As the
development phase of the programme was during the late autumn of 2008, it was
envisaged that the first visits to the Aberdeenshire families would not be until March
of 2009, which would hopefully ensure improved weather and light for travelling.
In addition to the twenty-one hours of direct facilitator time with the families,
facilitators were also expected to engage in other duties connected with the
programme. These included commentaries of contact and the support provided9, the
organisation associated with the delivery of each workshop (e.g. ensuring that all
parents were notified and familiar with the venue, and that catering had been
accommodated for), entering information into the computer allocated to the
programme, management and recording of allocated monies to carry out their roles.

6.3.7 Family Facilitator Induction and Supervision

Following recruitment the Family Facilitators were given four days of
induction training. The first two days focused on the Parent Progamme the rationale
for its development, the workshops and the manuals as well as all organisational
aspects associated with the programme and their role in its delivery and
management. The remaining two days were used to introduce the Facilitators to the
concepts and techniques of Motivational Interviewing as well as working alongside
them to set up the administrative systems required for the running and evaluation of
the programme. While two of the Facilitators were Psychology graduates, none of
the four had any previous training in MI or were aware of how it is used clinically.
Rather than provide them with a history and background to MI, it was felt that a
more practical use of the time was to directly engage with the “spirit” of the
approach the techniques employed, and the psychological constructs of motivation
and ambivalence. The two days were designed to use both formal teaching via
power point handouts and practical sessions where the facilitators would practice
skills on one another lead by the researcher and informed by the power point

9
These were notes for supervision which allowed the researcher to monitor how the Facilitators interacted with parents

82
handouts. In addition, it was planned that throughout the intervention the four
Family Facilitators would receive both group and individual supervision from the
author, on a basis of 1 hour supervision for every 3 hours of family work, with the
author being available at any time should additional support be required.
Supervision sessions would be used to discuss individual families, where facilitators
may be “getting stuck” and fine-tune motivational interviewing skills.
The approach adopted in this parents programme takes consideration of how
individual family members appraise the behaviour of their son/daughter and cope
with the resulting stressor. However, as indicated in earlier chapters, many families
report a sense of isolation that can in part be a function of hopelessness, derived from
past experiences of being unable to change their child’s behaviour (Jones, 1997;
Powers, 1989; Tommasone and Tommasone, 1989). It was envisaged that Family
Facilitators would confront this within their work with families and that parents may
simply request that Family Facilitators provide direction on how to resolve
behavioural issues. Given the lack of experience of using MI and the background
and experiences of the Family Facilitators as professionals who are involved in the
delivery of care and education to children with autism, it was envisaged that the area
of MI that they would struggle most with was the ability to resist the “righting
reflex”. The righting reflex refers to a tendency to ensure that the parent understands
and agrees with the need to change and to find solutions for the parent. While the
righting reflex is born out of concern for the parent and the situation they find
themselves in, it prevents the parent from dealing with their own issues of
ambivalence, self-efficacy and confidence. To guard against this, considerable time
was built into the induction programme focussing on when and how this may arise,
with Family Facilitators engaging in role play to practice how they would address
this issue.
As autism does not fit neatly into mental health or learning disability
frameworks there is a risk that families could previously have been offered advice
that does not fit with their experience of their child. It is noted in the literature that
when families have received advice from professionals that has either been
misguided or inappropriate, they are less likely to adopt new strategies or trust in
approaches developed by professionals that require commitment and resource

83
(Sharpley, Bitsika and Efremidis, 1997). Thus, it was anticipated that Family
Facilitators may experience resistance to their role due to parental experience of past
failure resulting from a lack of appropriate training and/or understanding, from the
professionals providing that advice. To help address this issue the induction was
designed to allow Family Facilitators to role-play resistance from parents. MI skills
of rolling with resistance could then be practiced while not losing sight of allowing
parents to address behavioural issues.
During this induction phase, and prior to the delivery of the first workshops10
Family Facilitators practiced the skills necessary to direct parents to the appropriate
elements of the manuals that could be used as a focal point to discuss feelings of
ambivalence, this was achieved through the practicing of open ended questions,
reflecting and summarising. For example, facilitators would practice conversational
pieces such as “ What you have described sounds like what the manual tells us about
sensory issues, what aspects of that do you see in your child?” Moreover, it was
important that Family Facilitators blended the skills necessary to practice MI with
the material in the manual and become familiar and confident with their role.
Scenarios were developed with the Family Facilitators during their induction where
they could practice the skills necessary to support parents develop behavioural
supports for their son/daughter and be supported in identifying appropriate target
behaviours. To facilitate this Family Facilitators practiced using the
importance/confidence ruler (Butler et al., 1999; Rollnick, Mason and Butler, 1999)
as it was laid out in the manual. It was hoped that in developing this skill Family
Facilitators would become proficient in supporting parents to identify behaviours that
they could address and succeed in making a change. By asking parents to rate both
the importance of a specific behaviour and their confidence in being able to
implement change relative to it, it was hoped that Family Facilitators would assist
parents in choosing behaviours that they were more likely to succeed with which in
turn would develop parent confidence in behaviour change.

10
Family Facilitators attended all workshops, providing administrative support and joining in on the discussion pieces with
parents and the researcher. Prior to the first workshop parents were assigned a Family Facilitator and the first workshop was
used as an opportunity to make introductions

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6.3.8 Timescales for the Development, Delivery and Evaluation of the Parent
Programme
Oct – Dec 2008 Development of programme materials (Workshops and
Manuals),
Recruitment and induction of Family Facilitators
Feb –March 2009 Delivery of Workshop 1 in Local Authority areas
March- June 2009 Family Facilitators Meet with Families
No Activity due to summer holidays
Aug-Sep 2009 Delivery of Workshop 2 in Local Authority areas
Sep-Oct 2009 Family Facilitators meet with families
Nov 2009 Evaluation of Parent Programme

6.4 Outcome Measures

6.4.1 The Parenting Stress Index-Short Form 3rd Edition (PSI-LF) (Abidin 1995)
The term 'parenting stress' encompasses the difficulties in adjusting to the
parenting role. The Parenting Stress Index (PSI) examines the level of stress within
the parent-child system and consists of factors reflecting a parental domain of coping
and perceptions of the child. Within the parent domain the subscales assess a range
of factors including depression, maternal health, difficult child and difficult parent-
child interaction.
The tool is a 120-item questionnaire with statements on a five-point Likert
scale. The items for the two domains use a five-point Likert scale ranging from
“strongly agree” to “”strongly disagree” to assess parents’ opinions. The first domain
is the Child Characteristics domain, which includes the subscales Adaptability,
Demandingness, Mood, Distractibility/Hyperactivity, Acceptability of Child to
Parent, and Child’s Reinforcement of Parent (Abidin, 1997; Loyd and Abidin, 1985).
When scores are elevated in this domain it is associated with children whose
behaviour causes significant stress to their parents and makes it difficult for them to
fulfil their parenting role (Loyd and Abidin, 1985). The second domain is the Parent
Characteristics domain, which includes the subscales Depression, Attachment to
Child, Social Isolation, Sense of Competence in the Parenting Role, Relationship
with Spouse/Parenting Partner, Role Restrictions, and Parental Health (Abidin, 1997;

85
Loyd and Abidin, 1985). A Total Stress score is obtained by adding the two domain
scores. The Stressful Life Events Scale is a yes/no item format evaluating the major
life events that occurred for the parent within the last year (Abidin, 1997). With these
domains, it is clear that both parent and child characteristics are viewed as important
dimensions of parenting stress. Also, with the addition of the Stressful Life Events
Scale, the daily hassles and the related adjustment are also considered. The test-retest
reliability for the Total Stress score on the Parent Stress Index ranges from .88-.90
and the test’s concurrent validity has been established with a number of measures,
including the Beck Depression Inventory, Child Abuse Potential Inventory, Child
Behavior Scale, Eyeberg Child Behavior Inventory, Family Adaptability and
Cohesion Evaluation Scales, and Family Impact Questionnaire. The two broadband
scores-child domain stress and parent domain stress were used for this study.

6.4.2 The Ways of Coping Scale

To determine which coping styles participants generally used, The Ways of
Coping (Revised) was administered (Folkman and Lazarus, 1985). This measure
contains 67 items divided into 8 domains (1 . Confrontive coping, 2. Distancing, 3.
Self-controlling, 4. Seeking social support, 5. Accepting responsibility, 6. Escape-
avoidance, 7. Planful problem-solving, 8. Positive reappraisal) these describe a broad
range of cognitive and behavioural strategies people use to manage internal and/or
external demands in specific stressful encounters. The scale is a 4-point Likert scale
(0 = does not apply and/ or not used; 1 = used somewhat; 2 = used quite a bit; 3 =
used a great deal), derived from the theoretical model of stress and coping postulated
by Lazarus, Folkman and other researchers. In developing the scale the authors
examined the interaction between appraisal and coping, and the outcomes of a
stressful encounter (Folkman et al., 1986). The theoretical model on which the
measure of coping is developed examines the relationship between stress appraisal
and coping style and acknowledges the role of primary and secondary cognitions
during a stressful encounter. As outlined previously the intervention described
within this thesis utilises knowledge of this relationship to influence parent
appraisals. Rather than “treating” behaviour the intervention aims to influence
appraisals by developing parental understanding of their child’s behaviour and

86
assisting in parents in their appraisals of what behaviours may be influenced by
social valid approaches to management.
The eight domains described above have coefficients of internal consistency
ranging from 0.61 to 0.79. Coefficients of reliability (Cronbach’s alpha) are
displayed in table 5 below (Folkman et al. 1986)

Scale No of Items
Chronbach’s
Alpha

Confrontive Coping 6 0.70

Distancing 6 0.61
Self-Controlling 7 0.70
Seeking Social Support 6 0.76
Accepting Responsibility 4 0.66
Escape Avoidance 8 0.72
Planful Problem Solving 6 0.68
Positive Reappraisal

Table 5 WC-R scales, items and reliability coefficients

6.4.3 Completion of Questionnaires

Questionnaires were distributed and completed at three time intervals during
the Parent Programme. Once participants had assembled to take part in Workshop 1
and introductions had been made, the researcher distributed questionnaires for
completion and gave verbal instruction as to how they should be completed. Once
all questionnaires had been completed they were then collected and the Workshop
was delivered. This process was repeated when participants assembled for Workshop
2 and finally Questionnaires were completed at the end of the last visit made by
Family Facilitators which all occurred after Workshop 2.

87
 It was envisaged that this would be the most reliable way by which to
ensure 100% return on the questionnaires and the controlled environment in which
they were carried out ensured authenticity of the responses and enabled the
researcher to assist with any questions regarding their completion.

6.5 Data Analyses

The study took measures over three time intervals with an overall aim to
evaluate the impact of the Parent Programme on reducing parent stress. As such the
aim, research questions and design of the study influenced the choice of analyses.
Data analysis was conducted using SPSS version 19 for repeated measures
ANOVA, which compared scores at Time 1 (prior to intervention), Time 2 (at a
midpoint, prior to workshop 2), and at Time 3 at the end of the intervention. The
analysis aimed to explore changes in stress variables as moderated by the Parent
Programme. In addition, the analysis explored changes in the use of certain coping
styles as described in the transactional model of stress and coping (Lazarus and
Folkman, 1984). Prior to applying the analysis checks were made on the data for
normality and kurtosis. Post hoc checks were also applied to check for both type 1
and type 2 errors.

88
Chapter Seven
Results
This chapter details the results of the study. The study tested three
hypotheses:
Hypothesis 1. It was predicted that parental stress related to child
characteristics would reduce resulting from the intervention.

Hypothesis 2. It was predicted that parental stress related to parent

characteristics would reduce resulting from the intervention.

Hypothesis 3. It was predicted that parental coping styles would change as

the intervention allows parents to explore their own coping resources when
considering behavioural change.

The hypotheses were tested using the Parenting Stress Index (Abidin, 1995)
and changes in coping variables explored using the transactional model of stress and
coping (Lazarus and Folkman, 1984). Descriptive statistics are presented according
to the measures used followed by analysis of the relations between the independent
and dependent variables using a repeated measures ANOVA11, within the general
linear model. Repeated measures ANOVA has been found to be a reliable tool to
analyse data where the aim of the study is to determine whether or not change has
occurred over time (Chi and Reinsel, 1989), it achieves this by comparing the
average score at multiple time periods for a single group of subjects, as was
performed within this study.
Questionnaires were analysed for the 71 participants on the results obtained
for the Parenting Stress Index (PSI-LF) and Ways of Coping-Revised (WoC-R). The
current sample size N=71 compares favourably with other studies in the area of
autism and parent intervention, many published studies have relatively low sample
sizes and the number included in this study is higher than that generally reported
(Diggle and McConnachie, 2009). This has been a general criticism of studies in this

11
Although not a hypothesis of the study, paired sample t-tests were carried out on the data for each LA separately. This was
to provide feedback to each LA based on their own population

89
area and a number of researchers have highlighted the risk of bias due to the lack of
representative samples (Diggle and McConnachie, 2009; Fombonne, 2001)
attributing small sample sizes to the low prevalence rate of autism in the community.

7.1 Assessing Normality and Post Hoc tests

The repeated measures design assumes that the dependent variables are
normally distributed. To test for this, skewness and kurtosis was assessed for all
dependent variables in the study. To satisfy the assumption of normality the
boundaries for both skewness and kurtosis, was set at +2.0 and -2.0 (De Carlo,
1997). Furthermore, in repeated measures ANOVA, the same subjects are used at
each time period, so there is an expectation that the measures will be correlated
across subjects, if the correlations across time periods are similar (sphericity). If they
are not similar, such as they are getting stronger over time, this will make the
differences between time periods stronger than they really are. If sphericity is
violated, the computed significance for the F-tests are too low and we may be
rejecting the null hypothesis when we shouldn’t (type 1 error). To assess this
mauchly’s test of sphericity was employed within the analysis. Post hoc tests using
bonferroni correction were applied to increase the degrees of freedom for the test,
which in turn reduces the significance level to a more accurate number.

7.2. Parenting Stress Index Results (n=71)

7.2.1 Hypothesis 1
In order to test the hypothesis that parental stress scores associated with child
characteristics and measured by the Child Domain of the PSI prior to and following
the intervention would be significantly different a repeated measures ANOVA was
performed. To check for compliance with sample size requirements, univariate
general linear model procedures were conducted. The minimum sample size
requirement that was within the repeated measures ANOVA was 10 + the number of
dependent variables (Tabachnick and Fidell, 2007). As the number of cases was 71
and the number of dependent variables in the analysis was 3 (time periods, assessed)
the resulting number is 74 which satisfies the minimum sample size requirement
(13). At time 1 the Skewness of the distribution was .586 and the Kurtosis was -.242,

90
as both values fall between +2.0 and -2.0 the assumption of normality was upheld.
At time 2 the Skewness of the distribution was .420 and the Kurtosis was -.660, as
both values fall between +2.0 and -2.0 the assumption of normality was upheld. At
time 3 the Skewness of the distribution was .726 and the Kurtosis was -.310, as both
values fall between +2.0 and -2.0 the assumption of normality was upheld.
The means and standard deviations are presented in table 6 below. There was
a significant effect for time, Wilks’ Lambda =.103, F(2, 69)= 299.317, p<.0005,
multivariate eta squared =. 897

Table 6. Descriptive Statistics for parental stress associated with child

characteristics
Time Period N Mean Standard
Deviation
Time 1 71 151.63 22.816

Time 2 71 111.75 19.739

Time 3 71 97.55 9.892

The results presented above indicate a significant change with a large effect
size in parenting stress associated with child characteristics. The results suggest a
significant reduction in stress for those parents participating in the family programme
whose stress arose from their view of their child’s behaviour. This overall reduction
in stress associated with child characteristics was relatively large, with the greatest
reduction being prior to the intervention to a midpoint half way through the
programme. A further reduction in stress was experienced at the end of the
intervention but was not to the same scale as was first observed.
The probability of Mauchly’s test for sphericity was .849 with p =.004,
therefore as p<0.05 the assumption of sphericity was not satisfied. Greenhouse-
Geisser, corrects for violations of the assumption of sphericity as it is a more
conservative estimate, ε= .869. When ε > .75 there is a risk of rejecting the null
hypothesis that sphericity holds (Collier, Baker, Mandeville and Hayes, 1967).
Therefore the Huynh-Feldt correction (Girden, 1992) was applied. Here ε=1.00,

91
1.00(1.0)= 1 lower bound, 1.00(140) = 140 upper bound, therefore the assumption of
sphericity is met.

Post Hoc Tests

Huynh-Feldt correction determined that mean parental stress associated with
child characteristics differed statistically significantly between time points F(2.000,
140)= 337.056, p < 0.0005. The post hoc tests using Bonferroni correction revealed
that the parent programme was effective in reducing parent stress associated with
child characteristics prior to intervention (time1)(M=151.63, SD= 22.816) to a mid
point in the intervention( time 2) (M= 111.75, SD=19.739), which was statistically
significant p<0.0005. Furthermore, the intervention maintained this reduction in
stress (though not to the same degree) till the end of the programme (time 3)
(M=97.55, SD=9.892). This further reduction was also statistically significant
p<0.0005. We can therefore confirm that the Parent Programme gave rise to
reductions in stress experienced by participating parents of children with autism that
are associated with child characteristics such as behaviour which is symptomatic of
autism.

7.2.2 Hypothesis 2
In order to test the hypothesis that parental stress scores associated with
parent characteristics and measured by the Parent Domain of the PSI prior to and
following the intervention would be significantly different a repeated measures
ANOVA was performed. To check for compliance with sample size requirements,
univariate general linear model procedures were conducted. As above, the minimum
sample size requirement that was within the repeated measures ANOVA was 10 +
the number of dependent variables (Tabachnick and Fidell, 2007). As before the
number of cases was 71 and the number of dependent variables in the analysis was 3
(time periods, assessed) the resulting number is 74 which satisfies the minimum
sample size requirement (13). At time 1 the Skewness of the distribution was .49
and the Kurtosis was -.973, as both values fall between +2.0 and -2.0 the assumption

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of normality was upheld. At time 2 the Skewness of the distribution was .944 and
the Kurtosis was 1.343, as both values fall between +2.0 and -2.0 the assumption of
normality was upheld. At time 3 the Skewness of the distribution was .763 and the
Kurtosis was .563, as both values fall between +2.0 and -2.0 the assumption of
normality was upheld.
The probability of Mauchly’s test for sphericity was .987 with p =.635,
therefore as p>0.05 the assumption of sphericity was satisfied. The ANOVA
compared scores at Time 1 (prior to intervention), Time 2 (at a midpoint, prior to
workshop 2), and at Time 3 at the end of the intervention. The means and standard
deviations are presented in table 6 below. There was a significant effect for time,
Wilks’ Lambda =.174, F(2, 69)= 164.173, p<.0005, multivariate eta squared =.826

Table 7 Descriptive Statistics for parental stress associated with parental

characteristics
Time Period N Mean Standard
Deviation
Time 1 71 146.87 27.741

Time 2 71 111.10 20.399

Time 3 71 98.39 11.098

The results indicate a significant change with a large effect size in parenting
stress associated with parental characteristics. The results suggest a significant
reduction in stress for those parents participating in the family programme whose
stress arose from parent stressors associated with child behaviour, such as depression
and isolation. This overall reduction in stress associated with parent characteristics
was relatively large, with the greatest reduction being prior to the intervention to a
midpoint half way through the programme. A further reduction in stress was
experienced at the end of the intervention but was not to the same scale as was first
observed.

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Post Hoc Tests
Bonferroni correction determined that mean parental stress associated with
parent characteristics differed statistically significantly between time points F(2.000,
140)= 226.873, p < 0.0005. The post hoc tests using Bonferroni correction revealed
that the parent programme was effective in reducing parent stress associated with
parent characteristics prior to intervention (time1)(M=146.87, SD= 27.741) to a mid
point in the intervention (time 2) (M= 111.10, SD=20.399) which was statistically
significant p<0.0005. Furthermore, the intervention maintained this reduction in
stress (though not to the same degree) till the end of the programme (time 3)
(M=98.39, SD=11.098). This further reduction was also statistically significant
p<0.0005. We can therefore conclude that the Parent Programme gives rise to
reductions in stress experienced by parents of children with autism that are
associated with parent characteristics.

7.3 Hypothesis 3
Ways of Coping Results (n=71)
The transactional model of stress (Folkman and Lazarus, 1984) explores the
relationship between the stress response and the coping styles used by the individual.
Hypothesis 3 of the study predicted changes in coping variables as parents interacted
with the Parent Programme. Specifically, the study aimed to explore changes in
accepting responsibility, confrontive coping, self controlling and positive re-
appraisal, a set of coping styles which may reflect changes in parental beliefs as to
the degree to which child behaviours may change (Aldwin et al., 1980, Lazarus,
1986) and offer healthier psychological outcomes.
Although analysis was carried out on all three time points in the coping
domains explored, the analyses of variables was primarily concerned with
investigating the hypotheses that the intervention would result in a change in the use
of coping styles, with the two time intervals, time 1 and time 3 being of the greatest
interest. Sphericity is always met for two levels of a repeated measure, and therefore
given that the main focust was change in coping styles from the beginning to the end
of the intervention, sphericity is met.

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 Sample size requirements, and normality was assessed for coping dependent
variables. The minimum sample size requirement that was within the repeated
measures ANOVA was 10 + the number of dependent variables, which was 2 as only
two time periods were being compared. As the number of cases was 71 and the
number of dependent variables in the analysis was 2 (time periods, assessed) the
resulting number is 73 which satisfies the minimum sample size requirement (12)
across all of the coping variables evaluated.

7.3.1 Accepting Responsibility

In order to test the hypothesis that total accepting responsibility prior to and
following the intervention would be significantly different a repeated measures
ANOVA was performed. At time 1 the Skewness of the distribution was .328 and the
Kurtosis was -.490 as both values fall between +2.0 and -2.0 the assumption of
normality was upheld. At time 3 the Skewness of the distribution was -.355 and the
Kurtosis was -.326, as both values fall between +2.0 and -2.0 the assumption of
normality was upheld.
The ANOVA compared scores at Time 1 (prior to intervention), Time 2 (at a
midpoint, prior to workshop 2), and at Time 3 at the end of the intervention. The
means and standard deviations are presented in table 8 below. There was a
significant effect for time, Wilks’ Lambda =.526, F(2, 69)= 31.052, p<.0005,
multivariate eta squared =.474

Table 8. Descriptive Statistics for accepting responsibility

Time Period N Mean Standard
Deviation
Time 1 71 5.20 2.214

Time 2 71 8.10 3.190

Time 3 71 8.15 3.115

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 The results indicate a significant change in the use of the coping style
accepting responsibility with a large effect size. Bonferroni correction determined
that the mean use of accepting responsibility differed statistically significantly
between time points F(1, 70)= 61.859, p < 0.0005. The post hoc tests using
bonferroni correction revealed that the parent programme was effective in increasing
the use of accepting responsibility from a time point prior to intervention
(time1)(M=5.20, SD= 2.214) to the end of the programme (time 3) (M=8.15,
SD=3.115) which was statistically significant p<0.0005. We can therefore conclude
that the Parent Programme gave rise to an increased use of accepting responsibility
as a coping style in those participating in the programme

7.3.2 Confrontive Coping

In order to test the hypothesis that total confrontive coping prior to and
following the intervention would be significantly different a repeated measures
ANOVA was performed. At time 1 the Skewness of the distribution was -.260 and
the Kurtosis was -.796 as both values fall between +2.0 and -2.0 the assumption of
normality was upheld. At time 3 the Skewness of the distribution was -.191 and the
Kurtosis was -.677, as both values fall between +2.0 and -2.0 the assumption of
normality was upheld.
The ANOVA compared scores at Time 1 (prior to intervention), Time 2 (at a
midpoint, prior to workshop 2), and at Time 3 at the end of the intervention. The
means and standard deviations are presented in table 9 below. There was a
significant effect for time, Wilks’ Lambda =.710, F(2, 69)= 14.112, p<.0005,
multivariate eta squared =.290

Table 9 Descriptive Statistics for confrontive coping

Time Period N Mean Standard
Deviation
Time 1 71 6.48 2.222

Time 2 71 8.18 2.820

Time 3 71 8.28 2.663

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 The results indicate a significant change with a large effect size in the use of
the coping style confrontive coping. Bonferroni correction determined that the mean
use of confrontive coping differed statistically significantly between time points F(1,
70)= 28.578, p < 0.0005. The post hoc tests using bonferroni correction revealed that
the parent programme was effective in increasing the use of confrontive coping from
a time point prior to intervention (time1)(M=6.48, SD= 2.222) to the end of the
programme (time 3) (M=8.28, SD=2.663) which was statistically significant
p<0.0005. We can therefore conclude that the Parent Programme gives rise to an
increased use of confrontive coping as a coping style.

7.3.3 Self Controlling

In order to test the hypothesis that total self controlling prior to and following
the intervention would be significantly different a repeated measures ANOVA was
performed. At time 1 the Skewness of the distribution was .001 and the Kurtosis was
.066 as both values fall between +2.0 and -2.0 the assumption of normality was
upheld. At time 3 the Skewness of the distribution was -.498 and the Kurtosis was
.285, as both values fall between +2.0 and -2.0 the assumption of normality was
upheld.
The ANOVA compared scores at Time 1 (prior to intervention), Time 2 (at a
midpoint, prior to workshop 2), and at Time 3 at the end of the intervention. The
means and standard deviations are presented in table 10 (p.93). There was a
significant effect for time, Wilks’ Lambda =.645, F(2, 69)= 19.010, p<.0005,
multivariate eta squared =.355

Table 10. Descriptive Statistics for self-controlling

Time Period N Mean Standard
Deviation
Time 1 71 9.08 3.363

Time 2 71 9.75 3.600

Time 3 71 8.85 3.197

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 The results indicate a significant change with a large effect size in the use of
the coping style self controlling. Bonferroni correction determined that the mean use
of self controlling did not differ statistically significantly between time points, F(1,
70)= .447, p =.506 Therefore the parent programme did not alter the use of the
coping style self controlling

7.3.4 Positive Re-appraisal

In order to test the hypothesis that total positive re-appraisal prior to and
following the intervention would be significantly different a repeated measures
ANOVA was performed. At time 1 the Skewness of the distribution was .292 and the
Kurtosis was -.424 as both values fall between +2.0 and -2.0 the assumption of
normality was upheld. At time 3 the Skewness of the distribution was -.738 and the
Kurtosis was .354, as both values fall between +2.0 and -2.0 the assumption of
normality was upheld.
The ANOVA compared scores at Time 1 (prior to intervention), Time 2 (at a
midpoint, prior to workshop 2), and at Time 3 at the end of the intervention. The
means and standard deviations are presented in table 11 below. There was a
significant effect for time, Wilks’ Lambda =.350, F(2, 69)= 63.169, p<.0005,
multivariate eta squared =.650

Table 11 Descriptive Statistics for Positive Re-appraisal

Time Period N Mean Standard
Deviation
Time 1 71 7.94 3.468

Time 2 71 11.53 4.003

Time 3 71 12.64 3.017

The results indicate a significant change in the use of the coping style positive
reappraisal, with a large effect size. However, Bonferroni correction determined
that the mean use of positive re-appraisal did not differ statistically significantly

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between time points, F(1, 69)= .172, p =.679, therefore the parent programme did not
alter the use of the coping style positive re-appraisal.

7.4 PSI Sub-Domains

The PSI comprises two domains, the Child Domain and the Parent Domain.
The Child domain is divided into the following sub-domains; Adaptability,
Acceptability, Demandingness, Mood, Distractibility/Hyperactivity and Reinforces
Parent. The Parent Domain is divided into the following sub-domains; Depression,
Attachment, Role Restriction, Sense of Competence, Social Isolation, Relationship
with Spouse and Parent Health. Descriptive statistics for the sub-domains are
outlined in Appendix 9 (P.134)
Within the Child Domain the greatest difference in means from time 1 (prior
to intervention) to time 2 (mid-point within intervention) was within the sub-domain
Adaptability. This was also the case for the difference between time 2 and time 3
(end of intervention), as well as the difference between time 1 and time 3. The
smallest difference between all time comparisons in the Child Domain was observed
in the sub-domain Mood.
Within the Parent Domain the greatest difference in means from time 1 (prior
to intervention) to time 2 (mid-point within intervention) was within the sub-domain
Competence. This was also the case for the difference between time 2 and time 3
(end of intervention), as well as the difference between time 1 and time 3. With the
exception of Spouse as measured between time 2 and time 3, the smallest difference
between all time comparisons in the Child Domain was observed in the sub-domain
Health.

7.5 Clinical Changes

At time 1 within the Child Domain of the PSI, the clinical cut offs’ showed
that 94% (n=67) of the parents were in the clinical range of stress associated with
child characteristics while only 6% (n=4) were subclinical. At time 2 this figure had
changed significantly to 24% (n=17) being within the clinical range and 76% (n=54)
being sub-clinical. By the end of the intervention there was a further reduction to 8%
(n=6) clinical range and 92% (n=65) for sub-clinical. While the study showed a

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statistically significant reduction in parental stress associated with parenting
characteristics the degree of clinical difference was not as profound as that shown by
the Child Domain scores. At time 1, 48% (n=34) were clinically stressed, while 52%
were in the sub-clinical range. This is in stark contrast to the experience of stress
within the child domain, which was much higher. This picture continued through the
other time periods. At time 2 these figures had changed to 10% clinical (n=7) and
90% (n=64), with a further change in numbers by the end of the intervention to 0%
(n=0) clinical, 100% (n=71) sub-clinical.

7.5.1 Correlations
Correlation analysis was conducted to explore the relationships and associations
between coping variables and stress measured within the PSI. A Pearson product-
moment correlation was carried out on the data set yielding a large number of
associations (appendix 10). However, the only one association was observed in two
time periods. At time 1 there was a medium negative association between planful
problem solving and parent health within the PSI r=-.417, p<0.01. While no
association was detected at time 2, a small negative relationship was detected at time
3, r= -.263, p<0.05. Indicating that planful problem solving is associated with poorer
health in parents.

Tests for normality identified a number of variables in the data set that were
significant, indicating that suggesting a violation of the assumption of normality. As
the distribution of the data may be misleading a further analysis using Spearman’s
rank correlation was carried out as it does not require a linear relationship between
variables. However, Spearman’s did not identify the same relationship between
planful problem solving and parent health. Rather two separate associations were
identified. At time 2 confrontive coping had a negative medium relationship with
parent competence, rs= -.310, p<0.01, which carried on into a small relationship at
time 3, rs=-.290. p<0.05, indicating that parents using confrontive coping midway
through the intervention felt less competent within their parenting skills. Similarly,
at time 2 a small negative relationship was found between planful problem solving

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and parent competence, rs=-.261 p<0.05, which was also present at time 3, rs=-.271,
p<0.05. Indicating that use of planful problem solving as a coping style is associated
with parents feeling less competent.

Both planful problem solving and confrontive coping are associated with
problem focussed coping styles. While the Spearman’s correlation analysis indicated
that parent competence was reduced by use of coping styles that were more problem
focussed it is difficult to assert that there is a causal relationship between this type of
coping style and parent appraisal of poor competence. Analysis such as cross-legged
correlations can provide information regarding causal direction. However, given the
absence of a theoretical basis for associations between PSI and Ways of Coping and
the number of variables within the PSI, results of such an analysis would be highly
spurious. Nevertheless, this does raise important questions for future research. The
current study explored changes in parental stress as a result of using the psycho-
educational approach described, however, further exploration should be conducted to
investigate the theoretical associations between parental stress subdomains and
coping styles. Such investigation would perhaps offer greater insight into the
relationship between stress and coping.

7.6 Central Findings

The results demonstrate that for the cohort of 71 parents who engaged with
this intervention there was a significant reduction in parental stress associated with
both child and parent characteristics. This was a reduction that was maintained
throughout the intervention and was also associated by significant changes in the
clinical presentation of parents. In addition, the results suggest that the intervention
had the greatest effect on parental views of their child’s adaptability, and that this
construct predicted the greatest reduction in stress associated with child
characteristics. The construct of perceived competence changed the most within the
parent domain, and the results suggest that this had the greatest predictive value in
determining reductions in parental stress as a result of the intervention. Reductions
in parental stress were also associated with an increased use of the coping styles
accepting responsibility and confrontive coping. These styles reflect both emotion

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and problem focussed coping approaches and suggest that both these approaches to
coping are employed by parents of children with autism.
The pattern of sharp reduction in stress experienced from time 1 to time 2 and
then the further statistically significant but not as dramatic reduction from time 2 to
time 3 is consistent with most studies in general, where ANOVA has been used as a
statistical technique and intervention has shown to have a significant effect
(Keselman, Algina and Kowaluchuk, 2001). The relationship between independent
and dependent variables seems to have greatest effect at the initial stage of
intervention, subsequent changes tend to have more of a maintenance effect and
therefore tend to be less dramatic.

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Chapter 8
Discussion and Conclusion
Unlike other parent-mediated interventions, this study focused exclusively on
parents rather than the child with autism. The results show reduced stress in both the
child and parent domains of the PSI implying that some form of cognitive process
had occurred for parents during the intervention. The standard approach to
intervention in parents is to train them in the delivery of a specific programme that
will address skill deficits within the child such as communication or academic
performance (Diggle and McConnachie, 2009). However, this intervention simply
addressed the cognitions held by parents regarding their child’s behaviour, and the
beliefs regarding what behaviours they could address given their internal resources.
As discussed earlier in this thesis, appraisals are cognitive processes which
involve the evaluation of events to determine their relevance to the individual, and
whether the individual has the resources to avoid or prevent harm by altering the
situation in some way (Folkman et al., 1986). It would seem that by developing
parental understanding of their child’s behaviour and providing the means by which
parents can reflect upon their ability not to eliminate but rather shape behaviour into
socially valid expression we can reduce parent stress. As individuals understand the
nature of stressful encounters then they are more able to generate possible strategies
to manage the stress they experience (Billings and Moos, 1981; Folkman, 1984).
Here the derivation of meaning is crucial in how people make appraisals of the
stressor. In managing their child’s behaviour during stressful episodes, if parents are
able to derive meaning, from their child’s behaviour then it allows them to generate
strategies on how to respond. The workshops and manuals provide extensive
information as to the meaning behind some of the odd or challenging behaviour that
children with autism may present with. Lazarus (1991) asserts that when individuals
relate the meaning behind stressful events and how this relates to their own
interpretation of the event, the individual’s emotional response alters. By assisting
parental understanding of child behaviour, the relationship between the meaning
behind the child’s behaviour and the parents’ emotional response will likewise
change, with knowledge mediating within this change.

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8.1 Adaptability
The very crux of the intervention described in this thesis is the alteration of
parent appraisals of their child’s behaviour and of their own appraisals of their role
as parents. When we examine the change in means within the PSI sub-domains we
observe that the greatest change within the child domain is within the construct of
adaptability. Abidin (1995) describes this construct as relating to behavioural
characteristics that make the child very difficult to manage. Specifically, the child is
lacking in adaptability and plasticity resulting in overreaction to changes in routine
and problems in establishing schedules, followed by perseveration in behaviour. In
addition, Abidin (1995) notes that parents who rate their child high in this sub-
domain also view them as having problems in adjusting to strangers and resistant to
the calming or soothing efforts of the parent. Rigidity of behaviour, a requirement
for sameness, fear of strangers and an inability to regulate emotion are behaviours’
that are commonly found in children with autism (McClintock, Hall and Oliver,
2003). Moreover, as Hastings et al. (2005) points out such behaviours are often
considered socially inappropriate and are central to the stress experienced by parents
of children with autism. Many approaches such ABA, Son-Rise and Floortime,
instruct parents in techniques to intensively apply to their child with the aim of
eliminating such behaviours (Howlin, Magiati and Charman, 2009; McConachie and
Diggle, 2007). By comparison, no such skill was taught within the parent
programme and no direction was given to parents as to how to eliminate these
behaviours within their child. However, these behaviours were discussed in both the
workshops and the manuals, and many illustrations were provided as to how these
behaviours provide an insight into how a child with autism experiences the world.
Moreover, the Positive Programming approach outlined in the parent programme
teaches us that in understanding the meaning behind these behaviours we can offer
children with autism supports to manage these behaviours within socially inclusive
environments.
When we consider the components of the parent programme concerned with
the sets of behaviour which adaptability within the PSI measures we observe
elements of both emotion and problem-focussed coping. The development of
knowledge as to how a behaviour arises in a child with autism allows us to appraise

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whether there is any aspect of that behaviour that we can influence or whether we
simply must accept the situation, remain calm and keep that person and ourselves
safe from harm. As a result of the intervention parents increased their use of the
coping style accepting responsibility. This is primarily an emotion focussed coping
style (Folkman and Lazarus, 1988), which is highly correlated with positive re-
appraisal (Folkman and Lazarus, 1985). The construct of accepting responsibility is
aligned with appraisals regarding our role within the stressful encounter (Lazarus,
1991). Where children with autism are presenting in a rigid, fearful and stereotypical
manner, it is important for the carer to reflect if there is any action that they may
have done that has contributed to the behaviour and if by altering their own
behaviour they can reduce the stress experienced by the child. Both workshops and
manuals touch on this area. In workshop and manual 1, consideration is given to the
role of carer in their interpretation and maintenance of challenging behaviour. Page
18 of Manual 1 describes the limited Opportunities for Interaction that many
children with autism experience and illustrates that behaviour that may seem socially
inappropriate such as “hitting” may in fact be a means of engaging for a child with
autism. This interpretation requires a re-appraisal of what would normally be
deemed as a challenging situation. It requires the parent to reflect on the situation
and accept their role in setting up opportunities for play with other children that may
be overwhelming to the child with autism if they do not understand the rules
involved.
The use of Confrontive coping was also noted to increase as a result of the
intervention. This problem-focussed coping style is associated with meeting
problems “head-on” rather than using avoidant styles of coping. It is also associated
with efforts to aggressively alter the situation and suggests some degree of risk-
taking (Folkman and Lazarus, 1980). As parents experience less stress relating to
their child’s lack of adaptability their confidence will no doubt grow. While there
was no measure of confidence within the intervention, the transactional model of
stress indicates that coping may influence a person’s re-appraisal (Folkman et al.,
1986). The re-appraisal may be viewed as a means of experiencing the encounter as
less stressful and increasing parent confidence to confront every-day events that they
would previously have avoided due to the fear of threat for the safety of their child or

105
from the views of others within the community. Taking action such as having
renewed confidence to enter public settings which previously a parent would have
avoided for fear of their child’s behaviour, is a form of confrontive coping, as it is
congruent with meeting the encounter “head-on” and can be seen as the opposite of
avoidant or escape based coping styles.

8.2 Competence
Within the context of the PSI competence as a construct relating to parent
characteristics refers to a parents beliefs regarding their ability to parent their child
and the ownership of the necessary skills to carry out parenting tasks (Abidin, 1995).
Given the behavioural characteristics of autism described earlier in this thesis many
parents feel a sense of helplessness when confronted with difficult or challenging
behaviour. (McCubbin et al. 2005). Moreover, given the atypical behaviour of
children with autism many parents feel ill equipped to manage such behaviours
within the family and are uncertain as to whether to adopt an authoritarian or more
accepting parent style (Hastings and Brown, 2002). Analysis of the parent
programme suggests that the greatest change in means within the parent domain of
the PSI was within the sub-domain competence (appendix 9, p.134). This change
implies that some aspect or aspects of the programme enhanced parental appraisals
of their ability to appropriately parent their child with autism, and that parents were
able to identify aspects of their situation that they could exert some influence over.
As discussed, the coping style confrontive coping is a problem-focussed coping style
which is employed successfully by individuals when they appraise that a situation
can be altered in some way and where the individual experiences significant
motivation to exert change (Folkman et al., 1986). The parent programme
intervention resulted in an increased use of confrontive coping as measured by
changes in the Ways of coping. In chapter 3 this thesis discussed the concept of
motivational relevance (Smith and Lazarus, 1993). Motivational relevance refers to
the extent to which a stressful encounter touches upon personal goals, beliefs and
threat to personal wellbeing (Smith et al., 1993). Given that parents have strong
attachments to their children, child behaviour has a significant degree of motivational
relevance and encourages the use of confrontive coping styles. However, due to the

106
degree of stress experienced by parents it would seem appropriate to assert that many
parents will feel general exhaustion from previous attempts to try and control their
child (Hastings and Brown, 2002). This exhaustion can often leave parents feeling
ambivalent about making changes in their life and that of their family, particularly if
they have experienced failure in the past (Hastings et al., 2005). Unlike other
directive parent-mediated approaches that can add to parent exhaustion (McHugh,
Saunders and Reed, 2008), the parent programme utilised Motivational Interviewing
techniques to explore parent’s motivation to identify those aspects of their child’s
behaviour that may be open to support and generate socially valid means of
implementing support. All of this requires a mixture of problem and emotion
focussed coping styles and the increased use of accepting responsibility and
confrontive coping by participants reflects this adaptive style. Moreover, the
reduction in stress observed within the competence sub-domain of the PSI may also
indicate the growing confidence of parents engaged in the programme as they learn
success in identifying behaviours’ that are receptive to support.
Parental experience of their child is central to deriving meaning from
interaction, this in turn influences parental reflection on their own competence of
parenting their child. Motivational Interviewing techniques employed within the
study sought not to place an external definition on child behaviour, but rather to
provide parents with an opportunity to reflect upon their experiences with their child
and resolve ambivalent feelings they may have to interaction and expectations of
child behaviour. Motivational Interviewing was chosen as a technique, as rather than
categorise child behaviour for the parent it allowed them to reflect upon experience
and use this as a means to enhance future interaction and feel confident within those
interactions.

8.3 Methodology Critique

While the intervention’s sample size was large enough to allow for statistical
exploration of the data, like many other studies in autism it was still relatively small
(Diggle and McConnachie, 2009). This is a general criticism of this area of study,
which as has been stated earlier is often attributed to the low incidence of autism.
However, the limited sample size was largely due to the limited finances available to

107
carry the study out and the time resource allocated to the author. As discussed
earlier, this also had knock on effects when considering the possibility of a control
group. During the design phase the author considered a control group but was aware
that this would be at the cost of sufficient numbers of participants given that time and
finances would have to be re-allocated to taking measures from a waiting group.
However, lack of controls is also noted by researchers in this area of study, and has
been attributed to the ethical consideration that it is better to offer parents some form
of intervention rather than nothing at all (Diggle and McConnachie, 2009; SIGN,
2007).
While approaches employed within this intervention such as MI and PP have
been evaluated within other areas of intervention, with other populations, the parent
programme is unique in combining these approaches and delivering this combination
to parents of children with autism. Further exploration should be considered of how
elements of the intervention such as positive programming, the workshops, the
manuals, family facilitator sessions, MI, and manual content contribute to changes in
parental stress and coping styles. For example, it would be of interest to know how
much of the variance is predicted by the roles of the Family Facilitators when
compared to the manuals and workshops. However, this again has resource
implications and while the study was given a generous grant there was insufficient
resource to involve measures of the Parent Programme components. Future research
within this area could then consider the various elements of the study and compare
outcomes against one another. For example, research which simply employs MI
techniques could be contrasted with studies using other single elements such as the
family facilitator sessions or workshops. Findings from such research may reveal
elements which are more cost effective and more readily accessible to families and
funders. In addition future research should also consider elements of sampling such
as; age of child, child ability, age of parents, parental marital status and presence of
other siblings within the family. These are important aspects that were not
considered within the scope of the intervention described and places limits upon the
conclusions which can be drawn.

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 A more thorough exploration of all coping variables and their relationships to
parental stress would have been beneficial. The research identified the coping
variables for analysis based on one area of the literature, however, further analysis
would have revealed a greater understanding of the relationship between changes in
parent stress and the resulting coping styles used. While complex this would have
given a sense of insight into the nature of the transactions between parents and
stressful encounters, particularly as existential and spiritual dimensions of coping
and how they were used by parents did not form part of the intervention.
While comments by parents were taken (appendix10, P.135) this did not
follow a systematic qualitative analysis and again had resource been available this
would have been a worthwhile enterprise, particularly when we consider the
statement above regarding the relationship between parents’ experience of stress
from caring for their child, the coping styles they use and their adaptability relative
to the intervention. Should the study be replicated then this would be an area worth
exploring as the insight gained may offer new perspectives into how dependent and
independent variables interact.

8.4 Conclusion
The results of the parent programme suggest that parent-mediated
interventions that target parental appraisals are efficacious in reducing parental
stress. The psycho-educational nature of the intervention described in this thesis
seems exempt from inducing stress in parents that is otherwise found in other forms
of intervention where parents experience stress through the burden of implementing
a set of prescribed techniques with their child. Psycho-educational interventions
such as the Triple P Programme (Sanders et al., 2003) have a strong evidence base in
reducing parental stress, but they are limited to parents of typically developing
children and as well as concerns regarding ethical validity, there is a lack of
empirical evidence to support the variation of the Triple P, (Stepping Stones Triple
P) which has been developed for parents of children with developmental disorders.
The stress experienced by parents of children with autism is relatively unique
and relative to other forms of disability is considered to be excessively high and of a

109
clinical nature. As such, the notion of a variation of the Triple P, which is designed
for parents of children with any developmental disability, may in fact be too broad.
However, there is a shared element between the SSTP and parent programme
described in this thesis and that is an emphasis on parent appraisal and the coping
styles employed in which knowledge seems to play a central role. The picture of
interaction between families with children with disabilities and the provision of
services to support them is not fixed to a particular point in time post diagnosis, the
nature of the interaction is continuous and varies across the life span of the disabled
child implying that approaches should be flexible enough to accommodate all ages of
children.
Many standard parent-mediated interventions such as ABA pay excessive
attention to the early years of development and ignore older children who may in fact
be more difficult to manage within the family home and place additional stresses on
parents through fear of harm to siblings. The Scottish Government’s strategy for
children Getting it Right for Every Child (Scottish Government, 2006) places
significant emphasis on supporting parents and the circles of support around the
child. The principles and overarching philosophy of this innovative document are to
be applauded but there remain significant gaps in our knowledge as to how to deliver
the correct supports, which are person and family centred. Moreover, while national
guidelines emphasise the importance of intervention that involves parents (SIGN,
2007) there remains a gap between evidence based practice and practice based
evidence to inform what intervention, and how it should be delivered.
Since the development, implementation and writing up of the intervention the
author has been engaged in exploring other aspects of coping within parents of
children with autism and the staff supporting them. In keeping with the
philosophical approach of this thesis, the author has been using aspects of acceptance
and mindfulness with parents and carers. Mindfulness and acceptance theory,
teaches the individual to pay attention to what is occurring within the here and now.
By encouraging the individuals to attend to their own physical experiences and allow
all thoughts whether they are painful or not to come and go the individual observes
less rumination and associated distress. This would seem to have enormous benefits
to parents of children with autism not just because of the potential health benefits,

110
but by attending to the here and now they are then able to attend to the current
engagement with their child.
Finally, during the writing of this thesis the author met with parents (n=10)
who were currently engaged in a parent-mediated intervention. The average cost to
these families was £700 per month, which was being paid for from the family’s
disposable income. At a time of austerity when families, NHS and local authority
budgets are being tightly squeezed we should consider the impact of delivering such
programmes on public finances and on family budgets. Many parent-mediated
approaches are privately funded which places new demands and stresses on the
family. Families will often reach out to a range of interventions as the sense of doing
something is better than doing nothing.

111
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 Appendix 1

Dear Parent

We are recruiting parents who are not currently involved in any home-based
intervention or are themselves receiving any talk- based therapy for stress, for a year long
parent programme study, for parents of children with autism. The programme involves
attending 2 workshops, receiving 2 manuals based on the workshops and 21 hours of support
from a family facilitator who will help you identify those behaviours you find challenging.
The study is supported by the Local Authority but will be delivered and evaluated by
the National Autistic Society who have received a Scottish Government grant to carry the
study out. Participants will be selected at random from those who complete this form and
return to the address provided. We will inform you in writing as to whether or not you have
been successful in being selected for the study.
You are welcome to withdraw from the study at any point and any information you
provide during the study will only be accessible to yourself and the members of the study
team. Personal information will be destroyed at the end of the study period in line with data
protection legislation (Data Protection Act, 1998).
Full details of the study aims will be given if you wish to participate and have been
selected. Should you wish to be put forward to participate then please fill in the cut off sheet
below and return it in the stamped addressed envelope provided which will be forwarded to
the researcher. The study is for single parents, married couples and those living with their
partner even if they are not related to your son or daughter.

If you do not wish to participate then you need to nothing more and we thank you for taking
the time to read this.

Yours Sincerely

Michael McCreadie
(Depute Principal, Support for Learning Daldorch House School & Researcher)

Please tear along here and return

………………………………………………………………………………………………..

I/We would like to participate in the National Autistic Society Parent Progamme study.

Name/s …………………………………………
……………………………………………..

Address …………………………………………….,

………………………………………….....,

…………………………………………….,

133
 Appendix 2

The National Autistic Society Parent Programme Study

Information Sheet

Thank you for agreeing to participate in the parent programme study. The
progamme is designed for parents of school aged children with autism.

What is the aim of the study?

There are many interventions for children with autism, some of which focus on
parents developing particular skills. However, many of the interventions take little
or no consideration of the demands that that implementing the intervention has on
parents and families. Rather than training parents in an approach that is to be used in
a prescribed way, this study provides parents with information about autism, assists
them in interpreting their child’s behaviour and hopefully reduces the overall stress
they experience.

How will the study be implemented?

The study involves attending 2 workshops, and receiving 21 hours of support from a
family facilitator who will assist you in using a manual to identify behaviours that
you wish to address in your child.

The content of the study is as follows:

Attend Workshop 1 & Receive Manual 1

1st visit from Family Facilitator

Attend Workshop 2 & Receive Manual 2

2nd visit from Family Facilitator

Study Results

Data Protection & Confidentiality

The study is designed and developed by Michael McCreadie and will contribute to
his doctoral degree in Health Psychology, at Queen Margaret University in
Edinburgh. During the study you will be asked to fill in questionnaires on stress and

134
coping before during and at the end of the study. This will enable the study to be
evaluated.

All personal information is confidential and only the researcher and family facilitator
will have access to your information, which will be anonymised as part of the study
analysis. All personal information at the end of the study will be destroyed.

Study Results

The study is funded by the Scottish Government who will receive a copy of a
detailed report of the overall results. An executive summary of the study will be
made available and you will receive a copy of this. Each local authority has
requested individual feedback on their own area and they will be provided with this
in the form of a report. However, this will be overall data and no individual
participant information will be shared.

What to do now

All you have to do now is complete and return the consent form enclosed and we will
write out to you informing you of where and when the first Workshop will take place
with the other participants from your local authority area.

Any other questions?

If you have any other questions, please do not hesitate to contact myself at Daldorch
House School.

01290 551666

michael.mccreadie@nas.org.uk

Yours Sincerely

Michael McCreadie
(Depute Principal, Support for Learning Daldorch House School & Researcher)

135
 Appendix 3

Dear

We are pleased to inform you that you have been selected for the National Autistic
Society Parent Programme. Please read the enclosed information sheet, which provides
details of the study and if you are still happy to participate sign and return the consent form
below and return in the stamped addressed envelope provided.

Yours Sincerely

Michael McCreadie
(Depute Principal, Support for Learning Daldorch House School & Researcher)

(Please complete, tear off and return)

…………………………………………………………………………………………

I/We would like to participate in the National Autistic Society Parent Progamme.
I/We have read and understand the information sheet regarding the purpose of the
study and consent to our information being held on file for the purpose of the
research.

Name/s ……………………………………………..
………..……………………………………………..

Signature/s………………………………………..
………………………………………………………..

Date…………………………………………………..

136
 Appendix 4

Dear Parent

We are sorry to inform you that you have not been randomly selected to
participate in the National Autistic Society Parent Programme Study. As the study
has limited funds there is limited availability for parents who wish to be involved in
the study. However, we have passed your details on to your local authority who will
inform you if any similar studies or programmes are to be delivered in your area.

I wish you all the very best, and thank you for showing interest in the study.

Yours Sincerely

Michael McCreadie
(Depute Principal, Support for Learning Daldorch House School & Researcher)

137
 Appendix 5

Workshop 1 PPT

138
 Appendix 6

Parent Progamme

Autism Quiz

TRUE

Autism is present at or shortly after birth Y/N

Autism is a mental illness Y/N

Autism is more common in boys Y/N

Autism can be cured Y/N

Autism has a genetic component Y/N

Autism and Asperger Syndrome are the same thing Y/N

Siblings of children with Autism are more likely

To have difficulties with learning or social understanding Y/N

Children with autism cannot learn new skills Y/N

If you have a high IQ you cannot have autism Y/N

Everyone with autism has a low IQ Y/N

Children with autism have unusually good hearing Y/N

Children with Autism cannot understand emotions Y/N

139
 Appendix 7

Workshop 2 PPT

140
Appendix 8

Manuals

141
 Appendix 9
Descriptive Statistics PSI Sub Domains
Std.
PSI N Minimum Maximum Mean Deviation Skewness Kurtosis
Sub-Domains
Std. Std.
Statistic Statistic Statistic Statistic Statistic Statistic Error Statistic Error
CDDHT1 71 12 43 27.39 7.448 .225 .285 -.652 .563
CD ADT 1 71 16 53 32.35 8.442 .205 .285 -.498 .563
CD RE T 1 71 8 29 21.04 4.630 -.345 .285 -.460 .563
CDDET1 71 17 44 29.14 7.564 .178 .285 -.837 .563
CDMOT1 71 7 27 18.65 4.290 -.434 .285 -.432 .563
CDACT1 71 9 34 23.13 5.642 -.328 .285 -.119 .563
PDCOT1 71 10 63 30.42 12.356 .591 .285 -.356 .563
PDATT1 71 6 32 21.34 6.208 -.315 .285 -.088 .563
PDHET1 71 1 41 13.52 6.118 1.062 .285 4.548 .563
PDRRT1 71 8 33 22.27 5.784 .034 .285 -.371 .563
PDDPT1 71 9 40 23.42 6.517 .526 .285 .015 .563
PDSPT1 71 6 31 16.51 5.689 .479 .285 -.182 .563
CDDH2 71 5 30 19.59 5.625 -.412 .285 -.063 .563
CDADT2 71 5 51 22.44 6.748 .729 .285 3.690 .563
CDRET2 71 4 29 15.96 4.578 .077 .285 1.122 .563
CDDET2 71 11 42 20.77 5.777 1.105 .285 2.415 .563
CDMOT2 71 8 28 15.55 4.468 .355 .285 -.334 .563
CDACT2 71 8 27 17.30 4.350 .138 .285 .257 .563
PDCOT2 71 10 38 19.63 6.755 .879 .285 .221 .563
PDATT2 71 6 29 16.37 4.914 .022 .285 -.214 .563
PDHET2 71 3 38 12.34 5.821 1.438 .285 4.598 .563
PDRRT2 71 4 28 16.93 4.370 -.165 .285 .869 .563
PDDPT2 71 4 36 17.58 5.198 .326 .285 1.815 .563
PDSPT2 71 4 27 13.80 5.312 .482 .285 -.057 .563
CDDHT3 71 5 27 16.96 4.477 -.370 .285 .145 .563
CDADT3 71 7 30 18.68 4.417 -.123 .285 -.006 .563
CDRET3 71 6 23 14.42 3.400 -.080 .285 .024 .563
CDDET3 71 9 27 17.80 4.143 .276 .285 -.492 .563
CDMOT3 71 6 23 14.17 4.199 .044 .285 -.484 .563
CDACT3 71 6 27 15.65 4.293 .378 .285 -.072 .563
PDCOT3 71 7 30 16.72 5.043 .530 .285 -.121 .563
PDATT3 71 7 29 14.28 4.536 .463 .285 .460 .563
PDHET3 71 2 20 10.94 3.817 .013 .285 -.431 .563
PDRRT3 71 4 24 14.89 3.934 -.024 .285 .332 .563
PDDPT3 71 6 24 15.39 3.743 -.140 .285 .122 .563
PDSPT3 71 3 24 12.51 4.545 .112 .285 -.360 .563
PDIST1 71 3 35 19.69 7.072 -.023 .285 -.812 .563
PDIST2 71 3 29 15.69 5.320 .159 .285 -.372 .563
PDIST3 71 3 24 14.00 4.558 .053 .285 -.328 .563

142
 Appendix 10 Pearson and Spearman Correlations

Tests of Normality

Kolmogorov-Smirnova Shapiro-Wilk

Statistic df Sig. Statistic df Sig.

Conf Coping Time 1 .156 71 .000 .950 71 .007

Dist Time 1 .140 71 .002 .941 71 .002
Self Controlling Time 1 .124 71 .009 .982 71 .396
Seek Soc Support Time 1 .106 71 .047 .969 71 .075
Accept Resp Time 1 .128 71 .006 .964 71 .042
Escape Avoid Time 1 .173 71 .000 .907 71 .000
Planful Prob Solving Time 1 .100 71 .077 .975 71 .172
Positive Reappraisal Time 1 .151 70 .000 .963 70 .039
Conf Coping Time 2 .109 71 .037 .967 71 .061
Distancing Time 2 .173 71 .000 .903 71 .000
Self Controlling Time 2 .094 71 .199 .977 71 .213
Seeking Soc Support Time 2 .139 71 .002 .947 71 .005
Accept Resp Time 2 .121 71 .011 .968 71 .064

EScape Avoid Time 2 .136 71 .002 .963 71 .036

Planful Prob Solving Time 2 .100 71 .078 .958 71 .018
Positive Reappraisal Time 2 .181 71 .000 .886 71 .000

Conf Coping Time 3 .142 71 .001 .969 71 .075

Distancing Time 3 .225 71 .000 .896 71 .000
Self Controlling Time 3 .106 71 .047 .962 71 .032

Seeking Social Support Time 3 .113 71 .025 .956 71 .013

accepting Responsibility Time 3 .100 71 .076 .976 71 .179
Escape Avoidance Time 3 .111 71 .029 .959 71 .021

Planful Problem Solving Time 3 .143 71 .001 .956 71 .014

Positive Reappraisal Time 3 .167 71 .000 .947 71 .005
CDDHT1 .098 71 .088 .973 71 .122
*
CD Adaptibility time 1 .078 71 .200 .979 71 .272
CD reinforces parent time 1 .145 71 .001 .958 71 .019
*
CDDET1 .084 71 .200 .956 71 .015
CDMOT1 .131 71 .004 .967 71 .057
*
CDACT1 .072 71 .200 .981 71 .364
PDCOT1 .121 71 .012 .957 71 .016

PDIST1 .099 71 .085 .975 71 .175

PDATT1 .098 71 .088 .970 71 .090
*
PDHET1 .088 71 .200 .927 71 .000
*
PDRRT1 .083 71 .200 .975 71 .174
PDDPT1 .099 71 .085 .968 71 .067

143
PDSPT1 .135 71 .003 .967 71 .062

CDDH2 .120 71 .013 .976 71 .193

*
CDADT2 .078 71 .200 .946 71 .004

CDRET2 .095 71 .182 .973 71 .122

CDDET2 .133 71 .003 .929 71 .001

CDMOT2 .114 71 .022 .973 71 .135

CDACT2 .122 71 .010 .969 71 .081

PDCOT2 .110 71 .034 .927 71 .000

PDIST2 .122 71 .010 .980 71 .324

PDATT2 .115 71 .022 .981 71 .359

PDHET2 .141 71 .001 .900 71 .000
*
PDRRT2 .092 71 .200 .975 71 .167
*
PDDPT2 .081 71 .200 .970 71 .089

PDSPT2 .119 71 .014 .971 71 .100

CDDHT3 .123 71 .009 .979 71 .279
*
CDADT3 .085 71 .200 .987 71 .673
*
CDRET3 .070 71 .200 .991 71 .884
CDDET3 .103 71 .061 .974 71 .151
*
CDMOT3 .085 71 .200 .980 71 .334
*
CDACT3 .072 71 .200 .979 71 .296
*
PDCOT3 .084 71 .200 .970 71 .085
*
PDIST3 .092 71 .200 .985 71 .584
PDATT3 .095 71 .186 .963 71 .034
*
PDHET3 .089 71 .200 .987 71 .659
PDRRT3 .110 71 .032 .980 71 .321
*
PDDPT3 .087 71 .200 .982 71 .405
PDSPT3 .108 71 .040 .983 71 .454

a. Lilliefors Significance Correction

*. This is a lower bound of the true significance.

144
Pearson Correlation Time 1

145
Pearson CDDH CD CDRP CDDE CDM CDAC PDCO PDIS PDAT PDHE PDRR PDD PDSP
Correlation A O T P
Time1

CC Pearson .075 .090 -.031 -.129 -.100 -.040 .055 -.150 .124 -.118 -.028 .095 .193

Correlatio
n

Sig. (2- .536 .456 .797 .284 .405 .739 .646 .211 .304 .325 .817 .429 .107
tailed)

N 71 71 71 71 71 71 71 71 71 71 71 71 71

D Pearson .023 - .018 -.109 -.075 -.209 -.106 -.175 -.011 -.104 .133 - .064
Correlatio .044 .073

Sig. (2- .851 .713 .879 .367 .535 .081 .378 .143 .926 .387 .270 .543 .596

tailed)

N 71 71 71 71 71 71 71 71 71 71 71 71 71
*
SC Pearson .153 .132 .099 .202 .091 .116 .170 .149 .177 -.279 .186 .230 .202
Correlatio

Sig. (2- .202 .273 .412 .091 .449 .335 .156 .215 .141 .019 .120 .053 .092
tailed)

N 71 71 71 71 71 71 71 71 71 71 71 71 71

SSS Pearson -.090 - -.066 -.165 .074 -.058 -.118 -.106 .075 -.204 .055 .053 .038
Correlatio .105
n

Sig. (2- .454 .382 .583 .170 .540 .630 .328 .380 .532 .088 .651 .664 .753
tailed)

N 71 71 71 71 71 71 71 71 71 71 71 71 71

AR Pearson .375** .192 .003 .101 .180 .121 .278* .253* .056 .005 .088 .076 .350**
Correlatio
n

Sig. (2- .001 .109 .978 .404 .132 .313 .019 .033 .640 .967 .464 .527 .003

tailed)

N 71 71 71 71 71 71 71 71 71 71 71 71 71

EA Pearson .189 .029 -.040 .005 .162 .140 .210 .055 .099 -.121 .124 .170 .142
Correlatio

Sig. (2- .115 .810 .740 .970 .177 .245 .078 .649 .412 .313 .302 .157 .239

tailed)

N 71 71 71 71 71 71 71 71 71 71 71 71 71
** *
PPS Pearson .058 .132 -.135 -.010 -.032 -.007 -.074 -.065 .132 -.417 .238 .071 .034

Sig. (2- .628 .274 .262 .934 .794 .951 .537 .590 .273 .000 .046 .559 .780
tailed)

146
 N 71 71 71 71 71 71 71 71 71 71 71 71 71

PR Pearson -.016 .012 .021 .074 .146 .000 -.098 -.020 .108 -.164 .101 .003 -.011
Correlatio
n

Sig. (2- .895 .923 .865 .541 .227 .998 .418 .869 .372 .175 .404 .981 .929
tailed)

N 71 71 71 71 71 71 71 71 71 71 71 71 71

CDD CDD CDM CDA PDC PDA PDD PDS

Pearson Time 2
H CDA CDRP E O CT O PDIS T PDHE PDRR P P

CC Pearson -.199 -.100 -.016 -.099 -.114 -.042 - -.082 -.090 .036 -.062 -.115 -.134
*
Correlation .284

Sig. (2-tailed) .097 .405 .895 .411 .346 .730 .016 .497 .453 .764 .610 .342 .265

N 71 71 71 71 71 71 71 71 71 71 71 71 71

D Pearson -.027 .121 -.041 .023 -.214 -.204 -.083 -.139 -.195 .136 .038 .028 -.042
Correlation

Sig. (2-tailed) .822 .316 .734 .847 .074 .088 .493 .249 .103 .257 .750 .819 .726

N 71 71 71 71 71 71 71 71 71 71 71 71 71
*
SC Pearson .186 .145 .232 .142 .004 .103 .082 .114 .084 -.063 .217 .247 .011
Correlation

Sig. (2-tailed) .121 .229 .051 .237 .971 .391 .497 .342 .484 .604 .069 .038 .929

N 71 71 71 71 71 71 71 71 71 71 71 71 71

SSS Pearson -.221 -.142 -.079 -.098 -.099 -.096 - -.033 .061 -.015 -.174 -.180 -.154
*
Correlation .255

Sig. (2-tailed) .064 .239 .515 .418 .411 .426 .032 .788 .611 .902 .147 .132 .199

N 71 71 71 71 71 71 71 71 71 71 71 71 71

AR Pearson .135 .038 .121 .176 .024 .032 -.077 .199 -.005 .040 .192 .181 .014
Correlation

Sig. (2-tailed) .261 .750 .316 .141 .841 .792 .522 .097 .967 .737 .108 .131 .909

N 71 71 71 71 71 71 71 71 71 71 71 71 71

EA Pearson .114 .035 -.182 -.113 .023 .167 .071 -.007 .002 .020 .123 .086 -.042
Correlation

Sig. (2-tailed) .345 .773 .128 .349 .849 .165 .554 .957 .985 .871 .308 .474 .726

N 71 71 71 71 71 71 71 71 71 71 71 71 71

PPS Pearson -.073 -.039 .050 .064 -.103 .037 - .105 .033 -.148 .044 -.046 .041
*
Correlation .237

Sig. (2-tailed) .547 .749 .680 .593 .392 .759 .047 .385 .784 .217 .714 .702 .736

N 71 71 71 71 71 71 71 71 71 71 71 71 71
147
PR Pearson -.100 -.125 .079 -.050 .003 .028 - -.051 .077 .067 -.006 -.115 -.057
*
Correlation .243

Sig. (2-tailed) .405 .299 .513 .681 .978 .814 .041 .672 .522 .581 .960 .339 .638

N 71 71 71 71 71 71 71 71 71 71 71 71 71

Sig. (2-tailed) .001 .408 .107 .512 .051 .035 .220 .285 .479 .374 .283 .009

N 71 71 71 71 71 71 71 71 71 71 71 71 71

*. Correlation is significant at the 0.05 level (2-tailed).

**. Correlation is significant at the 0.01 level (2-tailed).

148
 Pearson Correlation Time 3

CDM CDAC
CDDH CDA CDRP CDDE O T PDCO PDIS PDAT PDHE PDRR PDDP PDSP
*
CC Pearson .063 .050 .040 -.065 -.136 .096 -.282 .021 .140 .194 -.091 -.107 -.07
Correlation

Sig. (2-tailed) .600 .676 .739 .591 .258 .424 .017 .861 .244 .105 .450 .373 .55

N 71 71 71 71 71 71 71 71 71 71 71 71 7

D Pearson .134 .049 -.002 -.081 -.280* -.059 -.154 -.246* -.105 .109 -.043 -.112 .22
Correlation

Sig. (2-tailed) .265 .687 .990 .502 .018 .626 .200 .039 .382 .364 .720 .353 .05

N 71 71 71 71 71 71 71 71 71 71 71 71 7
**
SC Pearson .150 .154 .184 .084 -.014 .026 .128 .107 .149 -.063 .197 .310 -.10
Correlation

Sig. (2-tailed) .211 .199 .125 .486 .908 .829 .289 .375 .215 .603 .099 .009 .40

N 71 71 71 71 71 71 71 71 71 71 71 71 7

SSS Pearson -.062 .066 -.105 -.193 -.030 .089 -.044 -.124 .219 .016 -.057 .045 -.18
Correlation

Sig. (2-tailed) .607 .586 .384 .107 .805 .462 .715 .302 .067 .895 .639 .712 .13

N 71 71 71 71 71 71 71 71 71 71 71 71 7
*
AR Pearson .094 .168 .065 .099 -.070 -.017 .047 .191 .134 .040 .138 .302 -.03

Correlation

Sig. (2-tailed) .437 .162 .589 .413 .563 .887 .695 .110 .264 .738 .252 .010 .75

N 71 71 71 71 71 71 71 71 71 71 71 71 7

EA Pearson .293* .107 -.211 -.254* .102 .265* .022 .108 .264* .048 .101 .101 -.13
Correlation

Sig. (2-tailed) .013 .376 .078 .033 .397 .025 .857 .368 .026 .688 .400 .400 .27

N 71 71 71 71 71 71 71 71 71 71 71 71 7
*
PPS Pearson .134 .009 .097 -.048 -.091 .168 -.226 .182 .154 -.263 .143 .029 .02
Correlation

Sig. (2-tailed) .267 .938 .419 .691 .453 .162 .058 .129 .201 .027 .236 .812 .87

N 71 71 71 71 71 71 71 71 71 71 71 71 7

Pearson .141 .038 .134 -.085 -.007 .150 -.109 .217 .097 -.025 .095 .001 -.07

PR Correlation

Sig. (2-tailed) .242 .755 .265 .480 .957 .211 .367 .070 .422 .833 .432 .993 .53

N 71 71 71 71 71 71 71 71 71 71 71 71 7

Sig. (2-tailed) .400 .880 .129 .964 .678 .379 .380 .207 .162 .859 .629 .966

N 71 71 71 71 71 71 71 71 71 71 71 71 7

149
 Spearman’s Correlation Time 1
*. Correlation is significant at the 0.05 level (2-tailed). **. Correlation is significant at the 0.01 level (2-tailed).

CDD CDR CDD CD CDA PDA PD PDR PD

H CDA P E MO CT PDCO PDIS T HE R DP PDSP

Spear CC Correlation .067 .086 -.032 -.118 - -.056 .040 -.148 .087 - -.031 .082 .173

man's Coefficient .122 .088

rho Sig. (2-tailed) .578 .478 .791 .328 .309 .643 .739 .217 .473 .465 .798 .495 .150

N 71 71 71 71 71 71 71 71 71 71 71 71 71

D Correlation .011 -.072 .021 -.104 - -.164 -.140 -.209 .012 - .109 - .101
Coefficient .087 .049 .038

Sig. (2-tailed) .930 .553 .862 .386 .472 .173 .244 .080 .920 .685 .367 .754 .401

N 71 71 71 71 71 71 71 71 71 71 71 71 71

SC Correlation .141 .096 .097 .184 .120 .103 .160 .151 .146 - .174 .245 .226
*
Coefficient .229

Sig. (2-tailed) .242 .424 .421 .125 .317 .395 .183 .208 .226 .055 .146 .039 .058

N 71 71 71 71 71 71 71 71 71 71 71 71 71

SSS Correlation -.098 -.080 -.054 -.137 .039 -.063 -.058 -.084 .115 - .101 .066 .056
Coefficient .200

Sig. (2-tailed) .417 .508 .654 .255 .749 .602 .633 .486 .339 .095 .401 .586 .645

N 71 71 71 71 71 71 71 71 71 71 71 71 71

AR Correlation .320** .223 -.003 .108 .168 .102 .213 .243* .046 .098 .072 .104 .347**
Coefficient

Sig. (2-tailed) .007 .062 .983 .370 .162 .398 .075 .041 .703 .414 .552 .388 .003

N 71 71 71 71 71 71 71 71 71 71 71 71 71

EA Correlation .180 .025 .000 .021 .139 .099 .217 .013 .004 - .123 .175 .112
Coefficient .099

Sig. (2-tailed) .133 .838 .998 .865 .249 .413 .069 .913 .975 .413 .306 .144 .354

N 71 71 71 71 71 71 71 71 71 71 71 71 71

PPS Correlation .064 .133 -.122 -.010 - .016 -.074 -.051 .151 - .208 .101 .052
Coefficient .076 .376
**

Sig. (2-tailed) .598 .270 .309 .934 .530 .898 .538 .672 .210 .001 .082 .404 .669

N 71 71 71 71 71 71 71 71 71 71 71 71 71

150
 Spearman’s Correlation Time 2

P
D
CDD CDR CDD CDM CDA PDC PDA PDH PDR PD S
H CDA P E O CT O PDIS T E R DP P

Spearm CC Correlation -.189 -.081 .030 -.033 -.108 -.051 - -.060 -.082 .068 .047 - -.115
**
an's rho Coefficient .310 .10
4

Sig. (2-tailed) .115 .504 .802 .782 .372 .672 .008 .619 .496 .575 .694 .38 .339
6

N 71 71 71 71 71 71 71 71 71 71 71 71 71

D Correlation -.019 .025 -.117 -.081 -.230 -.114 -.061 -.203 -.097 .159 -.011 - .011
Coefficient .04
1

Sig. (2-tailed) .874 .839 .330 .503 .053 .345 .612 .089 .422 .185 .927 .73 .928
7

N 71 71 71 71 71 71 71 71 71 71 71 71 71
*
SC Correlation .148 .100 .202 .160 .041 .111 .037 .121 .052 -.095 .294 .21 -.078
Coefficient 5

Sig. (2-tailed) .218 .408 .092 .182 .735 .357 .762 .316 .668 .429 .013 .07 .518

N 71 71 71 71 71 71 71 71 71 71 71 71 71

SSS Correlation -.212 -.070 -.048 -.101 -.090 -.098 - -.055 .017 -.080 -.093 - -.130
*
Coefficient .273 .13
5

Sig. (2-tailed) .076 .561 .689 .403 .457 .415 .021 .650 .888 .506 .441 .26 .279
1

N 71 71 71 71 71 71 71 71 71 71 71 71 71

AR Correlation .125 .025 .115 .190 .026 .024 -.067 .197 .008 .050 .223 .13 -.038
Coefficient 1

Sig. (2-tailed) .300 .836 .340 .113 .831 .844 .577 .099 .944 .679 .062 .27 .753
5

N 71 71 71 71 71 71 71 71 71 71 71 71 71

EA Correlation .082 .057 -.182 -.145 .003 .201 .031 .015 -.048 .095 .173 .09 -.058

Coefficient 7

Sig. (2-tailed) .496 .636 .128 .229 .983 .093 .799 .903 .692 .429 .150 .42 .629
2

N 71 71 71 71 71 71 71 71 71 71 71 71 71

151
PPS Correlation -.093 -.020 .079 .087 -.149 .027 - .125 .024 -.208 .080 - .018
*
Coefficient .261 .07
7

Sig. (2-tailed) .442 .869 .511 .472 .216 .823 .028 .299 .842 .082 .507 .52 .884
6

N 71 71 71 71 71 71 71 71 71 71 71 71 71

PR Correlation -.064 -.057 .143 -.019 .016 .016 -.226 .016 .079 -.050 .102 - -.121
Coefficient .11
1

Sig. (2-tailed) .598 .635 .233 .877 .894 .893 .058 .893 .511 .678 .398 .35 .314
7

N 71 71 71 71 71 71 71 71 71 71 71 71 71

152
 Spearman’s Correlation Time 3

CD CDR CDD CDM CDA PD PDA PDR

CDDH A P E O CT CO PDIS T PDHE R PDDP PDSP

Spearman's CC Correlation .060 .035 .025 -.061 -.144 .092 - .003 .137 .171 -.099 -.164 -.049
rho Coefficient .290
*

Sig. (2-tailed) .622 .774 .838 .611 .229 .445 .014 .983 .256 .154 .412 .173 .687

N 71 71 71 71 71 71 71 71 71 71 71 71 71

D Correlation .205 .078 -.065 -.052 - -.028 - -.251* .012 .084 -.053 -.084 .239*
Coefficient .306** .084

Sig. (2-tailed) .087 .520 .590 .668 .010 .818 .487 .035 .918 .487 .663 .488 .045

N 71 71 71 71 71 71 71 71 71 71 71 71 71
**
SC Correlation .107 .152 .146 .058 -.057 .037 .049 .067 .134 -.061 .231 .308 -.084
Coefficient

Sig. (2-tailed) .375 .206 .226 .631 .634 .761 .685 .577 .264 .616 .053 .009 .488

N 71 71 71 71 71 71 71 71 71 71 71 71 71

SS Correlation -.076 .070 -.078 -.141 -.043 .088 - -.125 .181 -.039 -.043 .063 -.193
S Coefficient .026

Sig. (2-tailed) .526 .562 .519 .240 .721 .466 .831 .301 .132 .744 .719 .600 .107

N 71 71 71 71 71 71 71 71 71 71 71 71 71

AR Correlation .088 .155 .057 .108 -.079 .005 .047 .190 .127 .045 .158 .224 -.035
Coefficient

Sig. (2-tailed) .465 .198 .637 .370 .513 .966 .697 .112 .291 .707 .189 .061 .770

N 71 71 71 71 71 71 71 71 71 71 71 71 71

EA Correlation .296* .178 -.207 -.257* .032 .278* - .120 .189 .106 .067 .063 -.076
Coefficient .017

Sig. (2-tailed) .012 .138 .083 .031 .790 .019 .890 .319 .114 .381 .577 .604 .531

N 71 71 71 71 71 71 71 71 71 71 71 71 71
*
PP Correlation .090 .009 .128 -.035 -.107 .176 - .169 .130 -.255 .172 .026 -.004
S Coefficient .271
*

Sig. (2-tailed) .454 .941 .286 .769 .375 .141 .023 .159 .282 .032 .153 .828 .975

N 71 71 71 71 71 71 71 71 71 71 71 71 71

PR Correlation .134 .072 .160 -.073 -.053 .126 - .215 .123 -.059 .130 .070 -.067

Coefficient .063

Sig. (2-tailed) .266 .552 .182 .544 .658 .297 .600 .071 .307 .625 .278 .564 .580

N 71 71 71 71 71 71 71 71 71 71 71 71 71

153
Key to variables in correlation tables

Ways of Coping

CC = Confrontive Coping
D= Distancing
SC=Self Controlling
SSS=Seeking Social Support
AR= Accepting Responsibility
EA= Escape Avoidance
PPS=Planful Problem Solving
PR=Positive Reappraisal

PSI Subdoamins
Child
CDDH= Hyperactivity
CDA= Adaptability
CDRP=Reinforces Parent
CDDE=Demandingness
CDMO=Mood
CDACT=Acceptability

Parent

PDCO=Competence
PDIS=Isolation
PDAT=Attachment
PDHE=Health
PDRR=Role Restriction
PDDP=Depression
PDSP=Spouse

154
 Appendix 11

Parental Comments on Workshops

It was commented by participants that they enjoyed the opportunity to liaise
with other parents. When asked what aspects of the session they found most useful,
many commented that it was beneficial hearing “personal examples as it is nice to
know that all people are in the same boat.” Another attendee/participant stated that
they enjoyed “meeting different families going through the same stuff as us.”
When asked to rate how useful the references made to the examples used
throughout the workshops were, 96% of attendees/participants considered them to be
excellent or above average. 96% considered that by attending Workshop 1 they had
developed their understanding of behaviour. 53% of attendees/participants believed
that the course had developed their knowledge of how to manage behaviour to an
excellent standard with a further 36% rating their knowledge as above average at the
end of the session. 98% of participants stated that the overall rating of the course was
excellent or above average. 57% of attendees/participants commented at the end of
Workshop 1 that they gained a further understanding of autism spectrum disorder.
Many parents/carers shared that they were hoping to understand more about their
child’s behaviour which was felt by many to have been achieved. One parent/carer
explained they had hoped “to understand why their son behaved in certain ways and
these were met.” Another individual stated that they “didn’t think it would help but
they got lots of help and practical ideas.” “it was good to be in the company of other
parents and listen to their experiences.” One participant commented that “the
workshop was delivered in a very accessible manner.” One participant stated that
they found the “sharing of experiences very useful and appreciated the time taken to
discuss individual problems and the advice give.”

Family Facilitator Support

With regard to Family Facilitator input, a number of participants stated that
they felt they got a lot from their support. They stated that they found the facilitators
empathic and non-judgemental. One parent stated that they were “different from the
condescending support they had been offered in the past.” One family shared that the
Family Facilitator brought the family into a uniform way of thinking.
It was commented by participants that Family Facilitators were understanding
and demonstrated excellent listening skills. It was commented on by one participant
that the facilitator offered their family “excellent advice on the matters that I have
been working on and has also allowed my confidence to grow in knowing that I am
handling the situation as best as I can.” It was stated that the facilitators were
“approachable and had a general knowledge of autism. I feel I could ask her
anything.” Many families commented that they valued the chance to chat with
someone on a one to one basis and bounce ideas off each other. One family made
comment how they appreciated the visits being at home which meant they didn’t
have to worry about childcare. Several families commented on how the visits led to
them as a couple to focus their discussion.

155
Appendix 12

List of Abbreviations

ABA Applied Behaviour Analysis

DTT Discrete Trial Training

NAS National Autistic Society

PP Positive Programming

PSI Parenting Stress Index

PRT Pivotal Response Training

SRP Son-Rise Programme

SSTP Stepping Stones Triple P

TEACCH Treatment and Education of Autistic and related Communication-

handicapped Children

WoC-R Ways of Coping Revised

156