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PSYCHOLOGICAL WELL-BEING IN PARENTS OF
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PSYCHOLOGICAL WELL-BEING IN PARENTS OF CHILDREN WITH
PERVASIVE DEVELOPMENTAL DISORDERS AND ATTENTION-DEFICIT/
HYPERACTIVITY DISORDER
By

Lisa Choy Tang

A DISSERTATION

Submitted to
Michigan State University
in partial fulﬁllment of the requirements
for the degree of

DOCTOR OF PHILOSOPHY
Psychology

2008

ABSTRACT
PSYCHOLOGICAL WELL-BEING IN PARENTS OF CHILDREN WITH
PERVASIVE DEVELOPMENTAL DISORDERS AND ATTENTION-DEFICIT/
HYPERACTIVITY DISORDER
By
Lisa Choy Tang, MA.

This study drew on theories of psychological well-being, stress, and coping to
examine proﬁles of psychological well-being among parents of children with pervasive
developmental disorders (PDD) as compared to parents Of children with attention-
deﬁcit/hyperactivity disorder (ADHD) and of normally developing children. A total of
91 parents (38 PDD, 26 ADHD, 27 typical) were recruited from across the state of
Michigan. Measures of child behavioral and emotional problems were obtained using
parent and teacher reports on the Behavioral Observation Scale for Children, 2””! Edition.
Parents also completed adapted versions of the Brief C OPE and Brief RCOPE as well as
questionnaires regarding services and supports accessed by their family. Psychological
well-being was measured using the 9-item version of the Ryﬂe Scales of Psychological
Well-being and additional measures of Spiritual well-being, happiness, depression, and
anxiety. Principal components analysis was used to reduce the number of variables for
analysis. Although children with PDD and ADHD Showed differing clinical proﬁles
which indicated increased delays, behavioral problems, and emotional problems relative
to the children represented in the typical control group, parents of children with PDD and
ADHD did not differ in any aspects of psychological well-being. The PDD and ADHD
groups combined showed higher levels of depression than the typical parent group, but

did not differ on any other aspects of psychological well-being. Hierarchical regression

analyses indicated that child externalizing problems, attention problems, and internalizing
problems were related to increased anxiety and depressive symptoms after controlling for
household income. Avoidant-aggressive coping, social support, positive parent-child
relationship, and household income predicted 35% of the variance in general
psychological well-being. Active-positive coping, avoidant-aggressive coping, and
household income accounted for 22% of the variance in parent depression scores. None
of the coping or resource variables moderated the relationship between child diagnostic
status and parent well-being. Active-positive coping moderated the relationship between
child internalizing problems and parent depression. Substance-abuse / humor coping
strategies moderated the relationship between child internalizing problems and parent

anxiety. Clinical implications of findings and directions for future research are discussed.

In dedication to my family who taught me the greatest lessons in life.
To my father, Tung, whose courage, dedication and love for our family endured
through the hardest times and who will forever inspire me to appreciate
the opportunities that I have been granted.
To my mother, YukWah, who’s compassion and strength
have been an example for me.

To my brother, Ricky, who I will always admire and love.

iv

ACKNOWLEDGEMENTS

Many thanks to my advisor, Robert Caldwell, who persevered with me and supported me
throughout the process of completing this dissertation. His patience, support, and
guidance at each step of completing this research and careful reading of each draft of this
document have been this document was invaluable. He was always available to meet
with a neurotic graduate student and was remarkably capable of providing a wise
perspective when things did not go as I had planned. I am also grateful to Amy Matthews
at Grand Valley State University who met with me as an unfamiliar graduate student and
was so warm and supportive in helping me though each step of getting this research off
the ground and dissertation defended. Other members of my committee, Alytia
Levendosky, Joel Nigg, and Yeow Meng Thum, have generously offered their time and

expertise to help me improve my work. I thank them for being available.

I must also thank my friends, who helped me keep perspective and reminded me to have
fun and enjoy life, even though I was a graduate student. I must also thank my partner,
Chieu Hong, who has been patient and supported me throughout graduate school. Thank

you for the sacriﬁces you have made so I could pursue my dreams.

I need to especially thank the parents who were so generous with their time in
participating in this research. They entrusted me with their thoughts and feelings and
were patient in completing hundreds of questions asked of them. I also appreciate the
support from Blue Cross Blue Shield Foundation of Michigan and the Organization for

Autism Research who each supported portions of this research.

TABLE OF CONTENTS

LIST OF TABLES ........................................................................................................... viii
LIST OF FIGURES ............................................................................................................. x
KEY TO SYMBOLS OR ABBREVIATIONS ................................................................. xi
INTRODUCTION ............................................................................................................... 1
PSYCHOLOGICAL AND BEHAVIORAL PROFILES OF DEVELOPMENTAL
DISORDERS ....................................................................................................................... 3
Pervasive Developmental Disorders ........................................................................ 3
Attention-Deﬁcit / Hyperactivity Disorder .............................................................. 7
PARENTING STRESS ........................................................................................................ 8
PSYCHOLOGICAL WELL-BEING AMONG PARENTS OF CHILDREN WITH
DEVELOPMENTAL DISABILITIES .............................................................................. 11
Models of Psychological Well-being ..................................................................... ll
Distress and Grief .................................................................................................. 13
Positive Adaptation ................................................................................................ 15
Unique Experiences of Distress among Parents of Children with PDD ................ 19
Unique Experiences of Positive Adaptation among Parents of Children
with PDD ............................................................................................................... 23
FRAMEWORK FOR UNDERSTANDING THE STRESS AND COPING PROCESS..24
Child Characteristics- Sources of Distress when Raising a Child with a DD ....... 27
Family Characteristics ........................................................................................... 30
Moderators of Psychological Well-being in Parents of Children with DDS .......... 30
Coping .................................................................................................................... 31
Organization of Coping ............................................................................. 33
Measuring Coping ..................................................................................... 34
Coping Effectiveness .................................................................................. 35
Religious Coping ........................................................................................ 41
Causal Attributions .................................................................................... 44
External Resources and Supports ........................................................................... 47
Perceived Closeness to Child ................................................................................. 49
THIS STUDY .................................................................................................................... 52
Research Questions and Hypotheses ..................................................................... 53
METHODS ........................................................................................................................ 57
Participants and Recruitment ................................................................................. 57

vi

Measures ................................................................................................................ 60

RESULTS .......................................................................................................................... 66
Principal Components Analysis ............................................................................. 66
Descriptive Statistics .............................................................................................. 70
Tests of Research Predictions ................................................................................ 72

Hypothesis 1- Affective and Cognitive / Attitudinal Well-being
Comparisons Between Parent Groups ....................................................... 72
Hypothesis 2. Bivariate Associations Between Coping, Resource, and
Parent Well-being ...................................................................................... 74
Hypothesis 3 - Comparing Coping and Resource Eﬂectiveness Across
Groups ........................................................................................................ 80
Hypothesis 4— Relationship Between Child Context and Parent

Well—being .................................................................................................. 81
Hypothesis 5- Role of Parent-Child Relationship in Predicting Well-being
Among Parents of Children with PDD ...................................................... 86

DISCUSSION .................................................................................................................... 87

APPENDICES ................................................................................................................. 1 10
Appendix A ......................................................................................................... 11 1

Identifying Information F onn .................................................................. 112

Social History Form ................................................................................. 113
Professional Services and Support Questionnaire ................................... 116
Positive Affect Index ............................................................................... 118

Brief COPE .............................................................................................. 120

Brief R-COPE-revised ............................................................................. 122

Center for Epidemiological Studies Depression Scale ............................ 123

Beck Anxiety Inventory ........................................................................... 124
Subjective Happiness Scale ..................................................................... 125
Satisfaction with Life Scale ..................................................................... 125

Scales of Psychological Well-being ......................................................... 126
Spiritual Well-being Scale ....................................................................... 129
Childhood Autism Rating Scale ............................................................... 130
Appendix B .......................................................................................................... 132
REFERENCES ............................................... ' .............................. . ................................... 154

vii

LIST OF TABLES

Table 1. Number of Parents and Children Per Study Group ............................................ 133
Table 2. Characteristics of Parent Sample ....................................................................... 134
Table 3. Characteristics of Children ....................................................................... 135

Table 4. Principal Components Analysis using Varimax Rotation for Brief COPE
Items ................................................................................................................................. 136

Table 5. Principal Components Analysis using Varimax Rotation for Brief R-COPE and
religion items in Brief COPE ........................................................................................... 137

Table 6. Means, Standard Deviations, and AN(CO)VA and MAN(CO)VA Analyses for
Parent Psychological-Wellbeing Variables ...................................................................... 138

Table 7. Group Frequencies for Clinically Signiﬁcant Depression and Anxiety and Chi-
Square Analyses ............................................................................................................... 139

Table 8. Pearson Correlations of Household Income, Coping, Service, Support, and
Parent Affect, and Psychological Well-being Variables .................................................. 140

Table 9. Hierarchical Regression Analyses Statistics Showing the Relationship of Active
Positive Coping on Each Positive Affect and Wellbeing Measure Controlling for
Household Income ........................................................................................................... 141

Table 10. Hierarchical Regression Analyses Statistics Showing the Relationship Between
Resource and Support Measures on Parental Affect and Wellbeing Measures Controlling
for Household Income ...................................................................................................... 142

Table 11. Hierarchical Regression Analysis for Support and Coping Styles onto

Depression ........................................................................................................................ 143
Table 12. Hierarchical Regression Analysis for Support and Coping Styles onto

Composite Well-being .................................................................................................... 144
Table I3. Inter-rater correlations for BASC-2 scales ...................................................... 145

Table 14. Means, Standard Deviations, and ANOVA Comparison Statistics for BASC-2
scales ................................................................................................................................ 146

Table 15. Pearson Correlations for BASC-2 scales and Parental Affective and
Psychological Well-being ................................................................................................ 147

viii

Table I6. Regression Analyses Using Hierarchical Linear Modeling Statistics Showing
the Relationship Between BASC-2 Child Problems and Adaptive Skills onto Parental
Depression Controlling for Household Income ............................................................... 148

Table I7. Pearson Partial Correlations for BASC-2 scales and Parental Well-being,
Controlling for Household Income .................................................................................. 149

Table 18. Results of Hierarchical Linear Modeling Regressions Testing Moderation of
Child Stressors onto Parental Depression ........................................................................ 150

Table 19. Results of Hierarchical Linear Modeling Regressions Testing Moderation
of Child Stressors onto Parental Anxiety ........................................................................ 151

Table 20. Mean Coping Strategies by Group and Between Group One-Way ANOVA
Comparisons .................................................................................................................... 152

Table 21. Mean Services and Supports by Group and Between Group ANOVA
Comparisons .................................................................................................................... 1 53

ix

LIST OF FIGURES

Figure 1. Theoretical Model Of Parent Psychological Adjustment ........................... 52

Figure 2. Theoretical Model of Parent Psychological Adjustment with Variables
Incorporated .......................................................................................... 69

KEY TO SYMBOLS OR ABBREVIATIONS

A = Delta; change

,6 = Standardized beta; multiple regression coefficient

ADHD = Attention-Deficit / Hyperactivity Disorder
ANCOVA = Analysis of covariance

ANOVA = Analysis of variance (univariate)

B = Unstandardized beta; multiple regression coefficient

BAI = Beck Anxiety Inventory

BASC-2 = Behavior Assessment System for Children, Second Edition
CARS-P = Childhood Autism Rating Scale- Parent Form
CESD = Centers for Epidemiological Studies Depression Scale
DD = Developmental Disability

df = Degrees of freedom

F = Fisher’s F ratio

HLM = Hierarchical linear modeling

M = Mean

MANCOVA = Multivariate analysis of covariance

MANOVA = Multivariate analysis of variance

p = Probability

PAI = Positive Affect Index

PDD = Pervasive Developmental Disorder

r = Pearson product-moment correlation

xi

R = Multiple correlation

R‘2 = Multiple correlation squared

n = Number in a subsample

N = Total number in a sample

SD = Standard deviation

SE = Standard error of measurement

t= Computed value of a t test

X2 = Computed value of a chi—square test

xii

Introduction

Developmental Disabilities such as Pervasive Developmental Disorders (PDD)
and Attention-Deﬁcit / Hyperactivity Disorder (ADHD) are life-long conditions that
interfere with a wide array of cognitive, psychological, and behavioral functions. Each of
these diagnoses presents unique and huge challenges for parents. Although parents often
worry that something may be wrong with their child, the majority of parents are not
prepared for a reality where something is wrong with their child. Parents of children with
Developmental Disabilities are thus at increased risk for mental health problems and
compromised well-being. Less talked about, however, is that raising a child with a
disability can involve joys and even improved psychological well-being.

Approximately 17% of children have a developmental disability, of which
pervasive developmental disorders represent 2% and are the most severely debilitating
(Boyle, 2000). This study will examine how parents of children with developmental
disabilities, particularly PDD and ADHD, have attempted to adjust to the unique
challenges that these children present and the impact of these attempts on their own
psychological well-being as parents.

Attention-Deﬁcit / Hyperactivity Disorder occurs in approximately 3-7% of
school-aged children (American Psychiatric Association, 2000). The various similarities
that children with ADHD Share with those with PDDS (e.g., behavior problems, similar
executive functioning proﬁles, ambiguity in etiology, chronicity) and shared treatment
modalities sought by their parents make parents of children with ADHD an ideal control
group to isolate unique aspects of parenting a child with PDD that has yet to be explored

in the literature.

Research on parents of children with PDD has consistently reported higher rates
and severity of depressive and anxious symptoms as well as greater general psychological
distress in comparison to parents of normally developing children (Bitsika & Sharpley,
2004). Although less consistent, there is also evidence that parents of children with
PDDs experience higher risk for mental health problems than parents of children with
other chronic disabilities (Abbeduto, Seltzer, Shattuck, Krauss, Orsmond, & Murphy,
2004; Donovan, 1998).

Researchers have mostly approached the experience of raising a child with a PDD
as tragic and thus the questions asked and the methodology employed has not allowed
room for accounts of resilience or positive adaptation. This traditional deﬁcit model has
historically conﬁned psychological research for most of the past century. However,
ﬁndings from the deﬁcit based tradition have, as a byproduct, Shown that all parents do
not respond to stressors in the same way. In addition to understanding the speciﬁc
stressors that these parents experience, it is more crucial to identify how the varying ways
that parents attempt to cope with speciﬁc stressors inﬂuence a complete array of positive
and negative mental health outcomes.

Although the research literature is beginning to report accounts of resilience and
positive psychological growth related to having a child with a disability, this research is
predominantly qualitative and anecdotal rather than empirical. Qualitative methods offer
rich accounts of parental experiences, but progress requires use of quantitative research
methods that allow for generalizeble and rigorous ﬁndings to develop and maintain

appropriate support programs for parents.

The proposed Study will incorporate current theories of psychological-wellbeing
to investigate a more realistic range of experiences related to raising a child with a
developmental disability (DD) using quantitative research methods. Further, parents of
children with PDD versus ADHD will be compared to identify unique experiences in
parenting a child with PDD. The study will explore effectiveness of various coping
strategies and resources among parents across groups, then identify if there is a unique
coping and resource proﬁle for parents of children with each of the diagnoses and the
impact of these differences on parental outcomes. Additionally, this study will look at
moderators that have previously been neglected in research such as the parent-child
relationship, religious coping, parental causal attribution for the child’s disability, and the
role of child-directed treatment.

The methodology proposed in this research will contribute to a more complete
understanding of experiences of parents of children who have DDS. This research is also
indirectly relevant to child outcomes. Parental mental health has long been identiﬁed as
inﬂuencing parenting ability and has recently been identiﬁed as inﬂuencing outcomes
among children with mental retardation (Orsmond, Seltzer, Krauss, & Hong, 2003).
Ultimately, it is hoped that this research will inform treatment and services for parents of

children with developmental disabilities as well as for their children.

Psychological and Behavioral Proﬁles of Developmental Disorders
Pervasive Developmental Disorders

Although the term Pervasive Developmental Disorder (PDD) includes a variety of
disorders, of focus here are autism, Asperger syndrome, and pervasive developmental

disorder not otherwise speciﬁed (PDD-NOS). These three disorders are also collectively

referred to as the autism spectrum disorders. Whether the disorders represent distinct
disabilities or varying degrees of severity on a single autism Spectrum remains a topic of
debate (see Szatmari, 2000 for review). Regardless of diagnosis, PDDS are characterized
by impairments in reciprocal social interaction, communication, behaviors, and interests
relative to chronological and mental age (American Psychiatric Association, 2000).
Researchers from the United States Centers for Disease Control and Prevention
estimate that prevalence for the Autism Spectrum Disorders is at 60 cases per 10,000
(Bertrand, Mars, Boyle, Bove, Yeargin-Allsopp, & Decouﬂe, 2001). There have been
numerous reports world—wide of increased incidence of PDDS (see F ombonne, 2005 for
review), including the 237% increase between 1987 and 1998 reported by the California
Department of Developmental Services (1999) that sparked the attention of the world.
Although some of the increase has been attributed to increased awareness and improved
diagnostic validity, there appears to be a real increase in PDDS (California Department of
Developmental Services, 1999). At present, there has not been any identiﬁed cause for
this increase. The Autism Society of America estimates that between 1 to 1.5 million
Americans have an autism spectrum disorder (Autism Society of America, 2005). At
present, there is no scientiﬁcally proven cure for PDDS and information about the
effectiveness of early intensive behavioral treatments in managing the disorders has been
poorly disseminated to professionals and parents. Thus a growing number of parents are
faced with a chronic condition with which they struggle to understand and cope with.
Autism is the most widely known and researched of the PDDS. Estimates of
prevalence range from 5 cases per 10,000 (American Psychiatric Association, 2000) to 40

cases per 10,000 (Bertrand et al., 2001). The disorder is 3-4 times more common in

males than females (F ombonne, 2003). Onset occurs before 30 months. Asperger’s
disorder / syndrome and pervasive developmental disorder not otherwise Speciﬁed are
less common, occurring in 2.6 per 10,000 and 21 per 10,000 individuals, respectively
(Fombonne, 2003).

To appreciate the impact of PDDS on parents, it is important to review the
behavioral and psychological proﬁles of these children. Deﬁcits associated with PDDS
are highly variable across individuals. Generally, children with autism Show the most
severe impairments of the three disorders. Roughly 70% of individuals with autism have
mental retardation (Fombonne, 2003), individuals with Asperger’s disorder generally
have normal to above average intelligence, and intellectual proﬁles for those with PDD-
NOS varies widely. Note that the high comorbidity between autism and mental
retardation should be interpreted with caution and is likely an overestimate due to
questionable validity of IQ assessments for this population and improved treatments for
these children. Impairments across social, communicative, and behavioral skills are
generally more pronounced among children with comorbid mental retardation.

The hallmark deﬁcit in PDDS is impaired social functioning. Children with PDD
have impaired ability to understand, anticipate, and identify thoughts and feelings in
themselves and others (Bauminger & Kasari, 1999). These skills are collectively referred
to as theory of mind and are difﬁcult for even the most intelligent individuals with a PDD.
Children with PDDS have poor orientation to social gestures from others. For example, a
child with autism may not respond to his name being called or his parents speaking to
him. Reciprocal social interactions such as sharing in play, joint attention, and eye

contact are also impaired. Parents of children with PDDS often report difﬁculties

connecting emotionally with their child and feeling as if their child does not need them
emotionally. This sentiment is apparent in a mothers’ description of her relationship with
her child who has autism, “I am only important to him as one who fulﬁlls his needs. If it
were not me, then it could just as well be a total stranger” (Schreibam, 1988, p. 15).

Communication Skills are also impaired. At the mild end of the spectrum, a child
with PDD may have limited, if any, non-verbal communication, exhibit ﬂat affect, Show
exaggerated or ﬂat tone of voice, speak excessively, and Show poor pragmatics. Children
with Asperger disorder often have advanced vocabularies and speak incessantly without
attending to if their conversational partner is interested or even physically present. At the
more severe end, children with autism have delays in developing functional verbal
language; approximately 40% of individuals with autism never achieve functional speech
(Utah Department of Health, 2003).

Emotionally, children with PDDS Show ﬂattened, excessive, or contextually
inappropriate affect. A child with a PDD may become extremely upset in response to
normally minor disappointments. Disturbances in daily routines or corrections of
mistakes by a well-meaning teacher may result in biting, hitting, and screaming. They
may also laugh hysterically when someone trips. In addition to emotional outbursts, a
child with autism may lack appropriate safety behaviors and wander off in public places
(i.e., shopping malls, grocery stores, parks), thus limiting parents from going to these
places.

Self-stimulatory and stereotypic behaviors are common. These behaviors may
take the form of echolalia, rocking, whirling, and even self injurious behaviors such as

head banging. More impaired children may spend hours engaging in any one of these

behaviors. Children with PDDS also tend to have focused interests that vary in quality.
For example, hours may be spent spinning objects, studying door hinges, or learning
about trains.

Executive ﬁmctioning problems in the areas of cognitive ﬂexibility, abstraction,
attention, impulsivity, and ability to plan ahead are also common. Children with PDDS
have difﬁculty adjusting to change and tend to perseverate in their thoughts and
behaviors. Some children with PDDS are hypersensitive to sounds, textures, or tastes,
thereby limiting the clothes they will wear, foods they will eat, and places they will go.
Under-sensitivity to physical pain and lack of caution in physically dangerous situations

are also common.

Attention-Deﬁcit / Hyperactivity Disorder

Attention-Deﬁcit / Hyperactivity Disorder (ADHD) is another developmental
disorder of unknown etiology. Although symptoms can be treated pharmacologically,
there is no cure for ADHD and there is increasing evidence that the disorder is a chronic
one. Parents of children with ADHD have also been identiﬁed as experiencing increased
distress relative to parents of typically developing children. However, sources of this
distress, coping strategies, and predictors of psychological well-being may be different
than among parents of children with PDDS.

The disorder is characterized by age inappropriate inattention, hyperactivity, and
impulsivity (American Psychiatric Association, 2000). Attention-deﬁcit / hyperactivity
disorder is more common in males than females, occurring at a ratio of 2:1 to

9:1(American Psychiatric Association, 2000). Children with ADHD have difﬁculty

sustaining attention, are easily distracted by irrelevant stimuli, and have decreased
attention capacity. Poor regulation of motor behaviors and cognitive and behavioral
impulsivity are also symptoms of ADHD. Many children with ADHD have comorbid
oppositional deﬁant disorder. These children are deﬁant with adults, refuse to comply
with rules, can be easily annoyed or angered by others, and can be aggressive (American
Psychiatric Association, 2000).

Children with ADHD and PDD have overlapping deﬁcits in several domains of
executive functioning, including inhibition, planning, and cognitive ﬂexibility (Geurts,
Verte, Oosterlaan, Roeyers, & Sergeant, 2004; Goldberg, Mostofsky, Cutting, Malone,
Astor, Denckla, & Landa, 2005). Intellectual functioning is generally in the below
average range, however functioning is complicated by difﬁculties applying their intellect
in school and to their day-to—day lives (Barkley, 1997).

Children with ADHD tend to have social functioning deﬁcits due to impulsivity
and inattention to social cues. For example, they may speak out of turn, be disruptive in
class, blurt out embarrassing comments about themselves or others, and have difﬁculty
following rules. Unlike children with PDDS, these children do not lack fundamental
sociocognitive abilities such as theory of mind (Perner, Kain, & Barchfeld, 2002). Rather,

impairments in social functioning appear to be secondary to symptoms of ADHD.

Parenting Stress
Research on stress and coping among parents of children with PDDS began in the
19705 and has been limited by methodological problems. One major problem with the

research has been the operationalizing of stress. Thus, prior to beginning discussion on

stress among parents of children with DDS, it is critical to ﬁrst have a clear understanding
of what stress is. Stress has been a well-researched phenomenon and continues to have
strong theoretical relevance to psychopathology. Although commonly used in the
psychological literature, the deﬁnition of stress is too often vague.

Stress has most commonly been deﬁned as being either a stimulus or response.
Dual use of the term confuses the understanding of underlying processes. For example,
the Parenting Stress Index (Abidin, 1995) is a common measure of both child-related
stressor stimuli (Nachshen & Minnes, 2005) and of stress response (Harrison & Sofronoff,
2002; Tomanik, Harris, & Hawkins, 2004). Another problem with the index is that the
parenting stress model the index is based on assumes that difﬁcult child characteristics
such as poor adaptability, mood problems, behavior problems, and demandingness
directly produce and represent parenting stress responses (Abidin, 1995). Current
understanding of parenting stress suggests that Abidin’s (1995) model is too simplistic to
derive useful interventions to support parents aside from pointing the blame on the
child’s symptoms. Additionally, it artiﬁcially increases the relationships between child
characteristics and parent outcomes in research.

As argued by Lazarus and Folkman (1984), mixed stimulus-response deﬁnitions
of stress have limited utility due to their mutual dependence. For example, whether a
stimulus is considered to be a stressor depends on the response to that stimulus. However,
responses to various stressors are individually variable due to differences such as coping,
appraisal, and resources. Similarly, a response deﬁnition of stress cannot be determined

without ﬁrst identifying the anteceding stressor.

In an effort to make a clear distinction between these two categories of deﬁnitions,
stress Stimuli will herein be referred to as stressors. Stressors are internal drives and
external events that exert demands on the person (Lazarus & F olkman, 1984). Stress as a
response will be referred to using the general term distress as well as the more Speciﬁc
identiﬁers of depression and anxiety. Having a child with a DD. represents a potentially
chronic stressor involving continuous demands as well as a series of acute demands
across the child’s development.

One popular method of determining the presence of a stressor and measuring its
severity is via psychophysiological measures. This method was introduced by Hans
Selye’s (1936) General Adaptation Syndrome, which is a set of generalized physiological
reactions and processes initiated in response to demands. These responses have been
measured via secretions of the hormone cortisol. Reliance on cortisol levels to measure
stress is problematic because it is not a precise measure of either stressors or a stress
response. For example, cortisol levels naturally vary throughout the day and are
responsive to various events such as sleep cycles, eating, and emotional distress. Without
investigating the activating event, physiological arousal in and of itself cannot be inferred
to represent a stress response. Additionally, stress and distress are broad concepts that
represent speciﬁc emotional and physical characteristics, such as depression, anxiety, and
tension.

In order to inform treatment efforts and research on adaptational processes,
speciﬁc identiﬁers of psychopathology need to be used rather than a broad distress
concept. This study will rely on parent self reports of speciﬁc psychological symptoms

of depression and anxiety. Direct responses to questions about emotional well-being will

10

bypass the inference that needs to be made from psychophysiological measures of
distress that are impacted by non-emotionally related variables. Additionally, outcomes
in this study will be investigated in the context of a theoretically driven model where

child and family characteristics inﬂuence a variety of processes leading to adaptation.

Psychological Well-being among Parents of Children with Developmental Disabilities

The past three decades of research on parental responses to having a child with a
disability has focused on a loss model. This historically simple and truncated
understanding of the human experience as only being negative severely limits our ability
to help people achieve well-being (Seligman & Csikszentmihalyi, 2000). Identiﬁcation
of strategies and resources that have helped parents adapt positively to having a child
with a disability allows for empirically driven interventions to help support parents
experiencing difﬁculty adjusting to raising a child with a disability. Recently, research
has begun to focus on positive experiences of having a child with a disability. However
this research is limited in that it has been mostly qualitative and anecdotal. Due to these
various limitations, this review will draw upon empirical literature as well as personal
accounts reported in books written by parents of children with disabilities and reported in
the research literature in order to more completely review experiences of parents of
children with Developmental Disabilities.
Models of Psychological Well-being

The structure of psychological well-being has been a topic of debate for the past
half of the century (see Kaﬂta & Kozma, 2002 for review). There is general agreement

that psychological wellbeing has both affective and cognitive components. Affective

ll

wellbeing refers to subjective feelings of various emotions, including sadness, anxiety,
and happiness. Traditionally, positive and negative affect have been thought of as lying
on a Single continuum. Not only has research shown that positive and negative emotions
co-occur, positive emotions have been found to serve as protective factors against chronic
stressors (see F olkman & Moskowitz, 2000 for review). Measurement of positive and
negative affect as separate constructs is thus important. The cognitive component of
wellbeing involves evaluation of satisfaction with various aspects of one’s life.

Ryff (1989) proposes a separate multidimensional model of well-being that draws
upon humanistic theory and integrates mental health, clinical, and developmental
approaches to wellbeing comprised by key life attitudes. The Ryff Scales of
Psychological Well-being (Ryff & Keyes, 1995) is the product of Ryff’s (1989) 6-factor
construct of well-being consisting of self-acceptance, positive relations with others,
autonomy, environmental mastery, purpose in life, and personal growth. Conﬁrmatory
factor analysis Showed the 6 factor model to be the best ﬁt with data collected from a
large nationally representative sample of adults. These factors also joined together to
form a single higher-order factor of well-being, although this single higher-order factor
loading has not been found in other research (Kafka & Kozma, 2002). Van Dierendonck
(2004) proposed that spiritual well-being is an additional key component of
psychological well-being.

Overall, there is limited coherence in theories of the structure of psychological
well-being. Theoretical and empirical disagreements may stem from differences in
values rather than set human ﬁinctions of well-being. Deﬁnitions of well-being are likely

also to be ecologically dependent. Thus, values of what is important likely differ from

12

system to system (see Bronfenbrenner’s Ecological Systems Model, 1979). Deﬁnitions
of well-being likely differ by culture, community, and individual. To establish relevance
to this research, information was drawn from review of the existing literature and this
researcher’s own clinical, research, and personal experiences with parents of children
with PDDS. Based upon this analysis, affect, life-satisfaction, environmental mastery,
purpose in life, personal growth, spirituality, and social functioning seem to be aspects of
psychological well-being most relevant to parents of children with PDDS. The relevance
of these various components is further established in the following review of outcomes
among parents of children with DDS.
Distress and Grief

Children represent the future of their parents’ lives and to learn that something is
wrong with one’s child introduces a profound loss and feeling of uncertainty about one’s
future. Parents of children with chronic disabilities are often reported to experience a
loss of the dream of having a perfect child (N aseef, 1991, 2001; Whelan & Hudson,
1987). Most expectant parents look forward to having a perfect child who will be
successful in all the areas that they wished for themselves but did not achieve and who
will consummate their marriage. Concerns that something might be wrong with their
child loom in the background, but are overshadowed by preparations for the best hopes
and dreams. When parents learn that something is wrong, these images of perfection
“die” and are matched with a grief that pervades every layer of their being. When
something is wrong with the child, there is not only concern for the child’s future, but
also a seemed loss of the possibility that the parent could ever be the perfect parent that

he or she so hoped to become. Images of the perfect family are temporarily, and even

13

forever, crushed and the parent is faced with a daunting challenge that he or she is likely
unprepared to cope with. Life, hopes, and dreams must be reconstructed.

The complex emotions experienced by parents of children with chronic
disabilities are often compared to Elizabeth Kubler-Ross’s (1969) grief cycle. Although
progression through these emotions is a natural process, sometimes parents become stuck
in stages that either lead to maladaption or that in and of themselves represent
maladaption. Denial occurs when parents reject that anything is wrong or that the
diagnosis is absolute; this period could last from a moment to never accepting the
diagnosis. Common emotions reported among parents of children with developmental
disabilities are anxiety, depression, anger, shame, loss, and hopelessness. These painful
emotions may be experienced in any combination over time.

Research has widely reported that parents of children with Developmental
Disabilities experience increased mental health problems in comparison to parents of
typically developing children (Bitsika & Sharpley, 2004; Dyson, 1997; Podolski & Nigg,
2001). In a sample of 107 parents of children with an Autism Spectrum Disorder residing
in the Gold Coast areas of Australia, Bitsika and Sharpley (2004) found staggeringly high
rates of mental health problems in comparison to population base rates within the country.
Particularly, they found that 70.5% of the parents reported experiencing between High to
Very High levels of daily stress, 67.1% scored in the High to Severe ranges on a self-
report anxiety scale, and 39% scored in the High to Severe ranges on a self—report
depression scale. The numbers varied from a similar study of parents of children with
autism from another area of Australia and, although the authors did not speciﬁcally

address sources of this variance, they speculate that differences related to unequal access

14

to services. Although the study had a number of methodological weaknesses, including
lack of controls for important sources of variance in mental health (i.e., parent life
stressors, socioeconomic status), the numbers reported are disturbingly high and call
attention to the need for services for parents of children with PDDS.

Research has frequently reported that parents of children with autism are at
greater risk of becoming socially isolated in comparison to parents of children with other
disabilities (Kazak & Wilcox, 1984; Rodrigue, Morgan, & Gefﬂcen, 1990; Sivberg, 2002;
Trute & Hauch, 1988). Shame related to their child’s socially inappropriate behaviors
combined with the burden of dealing with a society that is intolerant of their child’s
disability and that blames parents for the child’s offensive behaviors could result in social
isolation (Gray, 2002a; Jones & Passey, 2005).

Positive Adaptation

Despite the great challenges that having a child with a developmental disability
presents, many parents do not experience mental health problems and even rise above the
experience, reporting improved quality of life, improved purpose in life, and that their
children have made them better people. In an analysis of publication trends between the
19703 and 19903 Helff and Glidden (1998) found that although emphasis on negative
outcomes among parents of children with disabilities has decreased, research on positive
adaptation has remained sparse. Most often, psychological wellbeing or positive
adaptation is studied by looking at the absence of psychopathology. Neglect of positive
aspects of wellbeing not only limits the understanding of health, but also the ability for
researchers and practitioners to identify and build upon strengths among parents of

children with disabilities.

15

The majority of the literature on positive accounts among parents of children with
disabilities has been narrative. Robert Naseef (1991, 2001), a psychologist and father of
a non-verbal adolescent with Autism writes about hope and positive growth derived from
personal, clinical, and research experiences. He writes to his son, “I have tried so hard to
change you, and in the end it was you who changed me. Instead of becoming the son I
wanted you to be you made me become the man I needed to be” (Naseef, 2005).
Although narrative accounts provide a wealth of information about individual
experiences, it is now time to explore these positive experiences empirically so that
robust support for predictors of resilience and positive adjustment can be established.

The sparse descriptive and empirical research on parents of children with various
DDS has suggested that many of these parents do experience positive adaptation. Based
on a two phase study where interview and survey data were collected from 95 parents of
children with a variety of disabilities (i.e., Autism, ADHD, Down Syndrome) about how
their lives have changed as a result of their child, Scorgie and Sobsey (2000) identiﬁed
several themes of positive adjustment. Speciﬁcally, parents reported that they were more
tolerant of diversity in others, experienced personal growth, and changes in their
philosophical and spiritual values. In the only research to examine positive affect among
parents of children with disabilities, Tumbull, Behr, and Tollefson (1986) interviewed 18
parents of children with a disability and identiﬁed reports of increased happiness, greater
love, and strengthened religious faith (as cited in Summers, Behr, & Tumbull, 1989).

Empirical research on wellbeing among parents of children with DDS has been
inconsistent and at times at odds with narrative accounts by parents. Sivberg (2002)

compared parents of children with autism and without autism on the Purpose in Life Test

16

(Frankl, 1958) and found that not only did the autism group experience less purpose in
life than the non-autism parent control group, the autism group scored in the low purpose
in life range. Sivberg (2002) also found that parents of children with autism scored lower
on a measure of perceived meaning in life, manageability of problems, and
comprehensibility of one’s environment. In another empirical study, Nachshen and
Minnes (2005) found that parents of children with DDS (including DS and Autism)
experienced less caregiver well-being on the Family Member Well-being Scale
(McCubbin & Patterson, 1982) than parents of typically developing children.

In contrast, Seltzer, Greenberg, and Floyd (2004) found no between group
differences in levels of wellbeing (Environmental Mastery and Self-Acceptance scales of
the Ryff Scales of Psychological Wellbeing; Ryff, 1995) between parents of children with
DDS compared to typically developing children. Because Seltzer et al. (2004) did not
report diagnostic characteristics of any of the children, it is unclear if and to what degree
results are representative of parents of children with PDDS or ADHD. Tunali and Power
(2002) found no difference in self-reported life satisfaction from interviews with mothers
of children with autism compared to mothers of normally developing children.
Differences in measurement and participant inclusion criteria likely contributed to these
varying ﬁndings among empirical studies. Failure to survey areas of wellbeing identiﬁed
in descriptive and narrative reports such as personal growth, spiritual growth, and
increased social tolerance suggests that these researchers excluded relevant components
of positive wellbeing in their designs and thus cannot make adequate conclusions about

the state of wellbeing in general among parents of children with DDS.

l7

Nachshen and Minnes’ (2005) study presents with another common problem with
the literature on positive outcomes in general- wellbeing was operationalized as being on
the same continuum as maladaption. The Family Member Well—being Scale (McCubbin
& Patterson, 1982) that Nachshen and Minnes (2005) used to measure well-being
aggregated items tapping health, tension, energy, cheerfulness, fear, anger, sadness, and
general concern to produce a general wellbeing score. AS described earlier, positive and
negative affect are omnibus constructs that can co-occur. Additional support for an
omnibus model of affect is found in Scorgie and Sobsey’s (2000) ﬁndings that parents
emphasized the importance of balancing positive transformations with negative
challenges they experienced as a result of parenting a child with a disability. An
additional importance of studying positive and negative affect separately is that it is
unclear from current research if predictors of these constructs are the same (see Hastings
& Taunt, 2002, for review). Thus, in addition to considering a complete picture of
mental health that includes positive adaptation, these experiences must be measured as
separate from negative mental health outcomes to better understand correlates of parental
outcomes. There has been no empirical research on the impact of children with PDDS on
positive affect among parents.

In sum, narrative accounts of parents of children with autism and descriptive
research on parents of children with DDS consistently report positive life changes related
to having a child with a DD. These positive accounts include improved social relations,
increased purpose in life, positive changes in spiritual and philosophical outlook, and
personal growth. Descriptive research on parents of children with disabilities in general

has identiﬁed accounts of increased happiness, greater love, and strengthened religious

18

faith. Few studies have looked at positive experiences among parents of children with
PDDS and the empirical research that has been done report inconsistent ﬁndings
regarding the positive impact of these children on their parents’ well-being. Problematic
operationalizing of well-being, varying inclusion criteria, and failure to incorporate
relevant variables may account for the varying ﬁndings. At present, it is unclear if
having a child with a PDD is related to compromised well-being in comparison to having
a normally developing child. Inclusion of a normal control group would inform this
question.

Unique Experiences of Distress among Parents of Children with PDD

Some studies have compared parents of children with PDDS with parents of
children with other disabilities in order to identify unique experiences of raising a child
with a PDD. By including children with separate constellations of overlapping symptoms,
the researcher can statistically and/or methodologically control for confounding factors to
identify correlates of core symptoms of interest by controlling for variance associated
with the confounding factors.

Donovan (1998) compared mother of adolescents with autism and mothers of
adolescents who had mental retardation and found that parents of adolescents with autism
reported greater family stress. Addebuto, Seltzer, Shattuck, Krauss, Orsmond, and
Murphy (2004) measured group differences in depressive symptoms, pessimism, and
closeness of the mother-child relationship among 174 mothers of children with a PDD
(Autism, Asperger Syndrome, and PDD-NOS), 22 mothers of children with Fragile X,
and 39 mothers of children with Down syndrome. Results indicated that the PDD group

of mothers reported higher levels of pessimism about their child’s ﬁrture, more distant

l9

relationships with their child, and more depressive symptoms than mothers in the Down
syndrome group. Mothers of children with Fragile X reported comparable levels of
depressive symptoms and pessimism about their child’s future to the PDD group.
Additionally, higher portions of mothers in the PDD group (33.3%) reported
experiencing depressive symptoms in the clinical range than the DS group (10.3%) and
the Fragile X group (18.2%).

Neither Donovan (1998) nor Abbeduto et al. (2004) precisely controlled for
adaptive functioning or behavior problems. Abbeduto et al. (2004) attempted to control
for child behavior problems using the Autism Behavior Checklist (Krug, Arick, &
Almond, 1980), a screener instrument for Autism with ﬁve subscales. However, rather
than controlling for behavior problems, Abbeduto et al. (2004) effectively controlled for
PDD diagnosis and may therefore have underestimated group differences in outcomes.
Also, rather than incrementally add predictors to their hierarchical regression analysis,
Abbeduto et al. (2004) added several independent variables at a time. It is thus unclear if
and how much of the group differences in outcomes they found could be attributed to
behavioral and/or adaptive functioning deﬁcits among these groups of children.

Mothers of children with Down Syndrome are most often used as a comparison
group to methodologically control for low intellectual ability, which is related to parental
burden and distress via adaptive functioning deﬁcits associated with intellectual
impairment (White & Hastings, 2004). However there are important differences in these
two conditions that limit what research using only Down syndrome control groups can
tell us about experiences speciﬁc to having a child with a PDD. Unlike PDDS, which

have ambiguous etiology, Down syndrome is a chromosomal disorder that clearly cannot

20

be cured. Ambiguous events have been identiﬁed in the coping literature as being the
most difﬁcult to adjust to (Taylor, 2006). Hope for a cure is also prevalent among
parents of children with PDDS, which can potentially inﬂuence outcomes. Additionally,
behavioral, intellectual, and social skill proﬁles are very different between these two
diagnostic groups. Whereas children with PDDS vary widely in intellectual ability,
intellectual functioning among children with Down syndrome is consistently below
average. Behaviorally, children with PDDS often have behavior problems; children with
Down syndrome are typically experienced as friendly with few behavior problems. In
fact, the Abbeduto et al. (2004) study’s measure of behavioral symptoms showed lower
variance in Autism Behavior Checklist scores in the DS group (a = 180.9) than the PDD
group (a = 657.4). As will be discussed later, behavior problems of the child are a major
source of distress for parents and thus it is important to also take these into account in the
research design aimed at understanding unique experiences of distress among parents of
children with PDDS by using a comparison group with comparable variability in behavior
problems.

Controlling for behavior problems and limitations in intellectual ﬁinctioning are
both important steps in isolating the impact of a core feature in PDDS on parenting that
has yet to be explored- social cognitive dysfunction. Controlling for intellectual
functioning using standardized assessments is not relevant to parenting a child with PDDS.
Standardized assessments of intellectual ﬁmctioning such as the Wechsler Intelligence
Scales or the Stanford-Binet scales frequently underestimate intellectual ability among
those with PDDS due to difﬁculties getting the child to cooperate and attend to the testing

procedures. The relationship between parent outcomes and their child’s IQ would most

21

likely be mediated by the functional impairment that is inherent with low IQ. Rather than
an intangible IQ value of questionable validity for children with PDDS, parents are most
likely to be impacted by behavioral indicators of their child’s likelihood to function well
in the future. Verbal language ability is the most reliable predictor of children with
autism’s outcomes (Szatmari, Bryson, Boyle, Streiner, & Duku, 2003). In fact, research
has found that for children with autism or PDD-NOS, ability to communicate is highly
predictive Of IQ (BOlte & Poustka, 2002). Considering these various factors, functional
communication abilities will be controlled for in this study rather than IQ.

Rather than include a Down syndrome comparison group that is radically
different from the PDD group, it is suggested here that language functioning be
statistically controlled for and that ADHD be used as a comparison group. Attention
Deﬁcit Hyperactivity Disorder is a good comparison group that has yet to be used in
research on parents of children with PDDS. AS described earlier, children with ADHD
tend to have comorbid behavior problems, social Skills deﬁcits, and impairments in
executive ﬁrnctioning. These characteristics overlap with children with PDDS(Goldberg
et al., 2005). However, the severity of social functioning deﬁcits is generally not
considered to be at a level that interferes with parental closeness to the child, as is the
case with the deﬁcits found among those with PDDS (Nixon, 2001).

There has been no research comparing parents of children with PDDS to those of
children with ADHD. However Holroyd and McArthur’S (1976) ﬁnding that mothers of
children with autism (n = 22) experienced more family integration problems compared to

mothers of children with general neuropsychiatric conditions may inform comparisons.

22

Parents of children with autism may experience more distress than parents of children
with ADHD.
Unique Experiences of Positive Adaptation among Parents of Children with PDD

Only two studies were found that compared parental wellbeing among parents of
children with DDS in comparison to other diagnoses using positive measures. In the only
study that separately included parents of individuals with autism, Greenberg, Seltzer,
Krauss, Chou, and Hong (2004) found no between group differences on a composite
measure of wellbeing of three scales of the Ryff Scales of Psychological Wellbeing
(Personal Growth, Self-Acceptance, and Purpose in Life) among the parents of adults
with autism, Down syndrome, and schizophrenia groups. Seltzer, Greenberg, and Floyd
(2004) also failed to ﬁnd any between group differences in the Environmental Mastery or
Self-Acceptance scales of the Ryff Scales of Psychological Well-being (Ryff & Keyes,
1995) among parents of children with DDS compared to the parents of children with a
severe mental health problem. Both studies suggest that having a child with a PDD
versus another disability may not differentially impact wellbeing. Due to lack of
inclusion of a normal control group, it is unclear if having a child with a disability
negatively or positively impacts positive wellbeing. However, based on the previously
reviewed studies suggesting that there is some impact on wellbeing, these studies suggest
that this impact occurs equally across parents of children with various psychiatric
diagnoses. However, before making this conclusion it is crucial to include appropriate
control groups and appropriate measures that are informed by clinical and narrative

accounts from parents of children with PDDS.

23

In sum, having a child with a DD, especially with a PDD, is a potential risk factor
that Signiﬁcantly increases risk for depression and anxiety. Although sometimes at odds,
research and parental narrative accounts suggest that many parents experience positive
life changes as a result of raising the child with the DD as well. Due to overly general
and limited grouping of parents in previous research, it remains unclear what the unique
positive and negative outcomes are among parents of children with PDDS. There is a
dearth of research looking at positive adaptation and the methodology used in the
research completed to date has left the question of how parents of children with PDD
compare in the area of positive adaptation to other parents. The research that has directly
looked at positive adaptation is especially lacking in quality and quantity and has
provided no useful information on positive adaptation of parents of children with PDDS
in comparison to other disabilities. Several remedies are proposed for this research: 1)
inclusion of parents of children with ADHD and parents of typically developing children
as comparison groups 2) include a broad assessment of psychological wellbeing
incorporating affect, life satisfaction, and attitudinal components relevant to parenting a

child with a disability, and 3) use of empirical measures to assess outcomes.

Framework for Understanding the Stress and Coping Process

Research has often used the ABCX model and variants of it as an organizing
framework to understand family adjustment to raising children with disabilities.
Originally proposed by Hill (1949), the letter A represents the stressor stimulus (the child
with a DD), B represents the family’s resources to meet the demands of the stressor, C

represents the meaning that is prescribed to the stressor, and X represents the resulting

24

crisis outcome. The model posits that X is inﬂuenced by A, B, and C factors, with B and
C factors partially mediating the relationship between A and X. McCubbin and Patterson
(1983) revised Hill’s model to incorporate a pile-up of stressors and readjustment of
resources and perceptions over time. According to McCubbin and Patterson’s Double
ABCX model, family reactions to the stressor of the child having a disability can lead to
an upward Spiral of growth (a concept termed “bonadaption”) if resources adequately
meet the demands of the stressor. A downward Spiral of crisis and dysfunction
(maladaption) would result if the resource factors do not meet the demands of the stressor.
The ABCX framework has guided research on parents and families of children with
Autism, Asperger Syndrome, Learning Disabilities, and DDS in general (Nachshen &
Minnes, 2005; Pakenham, Samios, & Sofronoff, 2005). Although derived from the
family systems literature, the model can be applied to understand individual experiences
within the family.

As reﬂected in the varying methods used to operationalize the components of the
ABCX models in research, the model is too general to consistently guide research
paradigms. The resource factor, for example, has been measured using social support,
coping styles, personality, characteristics, employment status, and sociO-economic status
(see Konstantareas, 1991 for examples). Also, distinguishing between C and A factors
has been confused due to reliance on parent reports of both A and C factors and due to
overlapping constructs being measured for A and C. Even in Pakenham et al.’S (2005)
design where A (obtained via maternal ratings on a behavioral rating scale incorporating
severity and frequency of the child’s behavior problems) and C (obtained via maternal

ratings on a separate measure of perceived stress related to behavior problems) appeared

25

to be theoretically separate, the C factor did not obtain signiﬁcance in predicting maternal
adjustment after covarying the A factor due to A and C being moderately correlated.

This study supports that A and C need to be derived from different sources and/or
constructs within these factors need to be conceptually distinct. McCubbin and
Patterson’s (1983) conceptualization of outcomes as being either bonadaptation or
maladaptation has also been shown in research to be inaccurate. Recall research
reviewed supporting an omnibus model of psychological well-being. Lastly, the idea of
having a child with a disability being representative of a crisis Situation is a biased
perspective on the parenting experience.

Perry (2005) proposes an alternate model that addresses some of the various
critiques of the traditional ABCX frameworks. His model separates stressors into child-
related and other life stressors. Resources (individual and family system) and supports
(informal and formal) jointly moderate outcomes, which are conceptualized as either
positive or negative. Although Perry’s (2005) model improves on the traditional ABCX
models in that it is more speciﬁc, the model drops the parental perceptions component.
Research on parents of children with disabilities has found that parent appraisals and
perceptions impact their well-being (Hassall & Rose, 2005). Like the ABCX models,
Perry’s (2005) model also does not incorporate current evidence suggesting an omnibus
model of psychological wellbeing.

The guiding framework proposed herein draws upon the ABCX legacy and
Perry’s (2005) model. Child and family characteristics are met with various internal
coping and external resource factors to inﬂuence varying aspects of psychological well-

being. Parent perceptions play a role in the framework in that they contribute to coping

26

and resource factors. Before describing the speciﬁc components of each factor in the
framework, existing literature on the varying relationships between child characteristics,
family characteristics, resources, coping, and outcomes are reviewed in the following
sections.

Child Characteristics- Sources of Distress when Raising a Child with a DD

Having a child with a DD introduces chronic challenges for those charged with
their care. Research has found that a child with a DD introduces both chronic challenges
and developmental period-Speciﬁc challenges across the lifespan (Gray, 2002b; Wikler,
Wasow, & Hatﬁeld, 1981). Wikler et al. (1981) reported that some parents experience
chronic sorrow. Parents have an internal template of what ‘normal’ children are and what
atypical parenting experience Should be like. Whenever experiences with their own
child with a DD depart from this template (e.g., ﬁrst words, choosing a lunchbox for the
ﬁrst day of school, birthdays, graduations, senior prom), the cycle of loss is retriggered in
parents by disappointment (Wikler et al., 1981).

Having a child with a DD introduces increased burden of care in comparison. to
parenting a typically developing child (Barkley, Anastopoulos, Guevremont, & Fletcher,
1992; Barnett & Boyce, 1995; Rodrigue et al., 1990; Rodrigue, Morgan, & Gefﬂcen,
1992). Various stressors related to the child and related to societal attitudes and
behaviors in response to the child are present. Gray (2002a) interviewed parents of
children with autism and found that parents frequently reported being victims of enacted
stigma. Speciﬁcally, they reported being yelled at for being bad parents, experienced

hostile staring from others, and being avoided socially.

27

Among child characteristics, behavior problems have been consistently identiﬁed
as the strongest source of distress for parents of children with DDS. Baker, Blacher,
Cmic, and Edelbrock (2002) found that child internalizing and externalizing behavior
problems were stronger predictors of child-related parent distress than mental delay and
accounted for statistically large portions of variance in parent distress independent of
mental delay. Tomanik, Harris, and Hawkins (2004) found that child hyperactivity,
noncompliance, and irritability were positively related to distress among mothers of
children with autism. Pakenham et al. (2005) found small to moderate partial
correlations between behavior problems among children with Asperger syndrome and
maternal social adjustment and depression after controlling for income, maternal age, and
gender of the child such that more severe behavior problems predicted poorer outcomes.
In a sample of parents of children with and without DDS, Nachshen and Minnes (2005)
found a large negative correlation between child behavior problems and parent well-
being (combined positive and negative affect). One study (Jones & Passey, 2005) failed
to ﬁnd an association between behavior problems and parent distress, but this was likely
due to their inadequate measuring of behavior problems as based on frequency rather
than a combined frequency and severity rating. Externalizing behavior problems have
also been linked to parenting distress among parents of children with only ADHD
(Podolski & Nigg, 2001).

Over time, the behavior problems of the child represent chronic sources of
distress. In a descriptive longitudinal study, Gray (2002b) found that families of children
with autism who had externalizing behavior problems experienced higher levels of

distress and social isolation over time than those of children who were not

28

aggressive/violent. In a longitudinal study of mothers of adults with mental retardation,
internalizing and asocial behavior problems of their child positively predicted maternal
depression, burden, and pessimism (Orsmond et al., 2003). The severity of the impact of
externalizing behavior on parents is portrayed in the following quote by a father about his
daughter with autism:

You can’t exaggerate [the impact]. Friends of [my wife] just burst into

tears at times when she just starts doing something or attacks [my

wife]. It’s just horrifying. It’s like a very nasty accident, an assault. If

someone assaults you, it traumatizes you. If someone assaults you

every day, I’m not sure what it does to you. But we get attacked, one

way or another, every day. (Gray, 2002b, p. 220)

Less researched is the role of functional communication in predicting parenting
distress. In a descriptive study of parents of children with autism in the Philippines,
Liwag (1989) reported that the child’s lack of speech was among the top sources of
distress for parents. Naseef (2001) writes about difﬁculties he experiences as a parent of
a non—verbal child with autism. Although there is no empirical research on the
relationship between functional communication and parent distress, a child’s failure to
communicate with his / her parent likely interferes with parenting gratiﬁcation and
contributes to concerns about the child’s ability to function independently in the future,
which is an identiﬁed source of anxiety for parents (Liwag, 1989). Failure to achieve
verbal language is a clear Sign of compromised outcome for the child in the future.

Thus, research suggests that children with DDS introduce increased burden of care

for parents due mostly to behavior problems and lack of functional communication. The

29

behaviors of the child with a DD lead to felt and enacted stigma against parents, who may
as a result become socially ostracized. Longitudinal research suggests the importance of
controlling for age of the child with a DD because of the additional impact of a pile-up of

stressful interactions associated with having a child with behavior problems.

Family Characteristics

Socio-demographic variables are often controlled for in social sciences research
due to known correlations with mental health outcomes. Family income and parent
education inﬂuence child and parent outcomes due to their impact on available resources.
In a study of 252 parents of children with chronic mental or physical disabilities, socio-
economic status was found to predict maternal mood (Williams, Williams, Graff, Hanson,
Stanton, Hafeman, Liebergen, Lueunberg, Setter, Ridder, Curry, Barnard, & Sanders,
2002). Controlling for number of other children in the household is also important due to
increases in burden of care related to having more children. Similarly, whether or not the
other children in the household have a disability also should to be considered.
Moderators of Psychological Well-being in Parents of Children with DDs

Although sometimes considered to be one and the same, coping and resources are
distinguished here for practical intervention reasons. The concept of coping will be
discussed in more detail, but the deﬁnition used here involves the cognitive and
behavioral efforts within an individual used to manage emotional and structural demands
of a stressor event. Resources are deﬁned here as external sources of formal and informal
support available to the individual that are sought in order to manage emotional and

structural demands presented by stressors. Using these deﬁnitions, the ﬁndings of this

30

research can be clearly translated into either individual-level or community-level
interventions.

Coping. Prior to describing the coping literature related to DDS, it is important to
ﬁrst understand how coping is conceptualized. The literature is fraught with
disagreements and contradictions about the deﬁnition of coping, how to conceptualize it
within the person and environment, how to categorize it, how to measure it, and how to
evaluate it. Here I will attempt to aggregate this literature in terms of its relevance to
parental coping in response to having a child with a chronic mental disability.

Lazarus and F olkman (1984) deﬁne coping as a dynamic interchange between the
person and the stressor. Coping is “constantly changing cognitive and behavioral efforts
to manage speciﬁc external and or internal demands that are appraised as taxing or
exceeding the resources of the person” (Lazarus & F olkman, 1984, p. 141).

The stress and coping process has been among the most avidly researched areas of
psychology. The hope has been that this research will be pivotal in developing
prevention and treatment programs for those at risk for mental health problems.
Proportionally, however, the quantity of this research has not been matched by its quality,
resulting in the now widespread criticism of the literature (Lazarus, 2000; Parker &
Endler, 1996). “Decades of concentrated research have yielded relatively little of either
clinical or theoretical value” (Somerﬁeld & McCrae, 2000, p. 620).

Two main approaches to understanding how people cope with Situations have
arisen from the literature: 1) the intra-individual approach and 2) the inter-individual
approach. Early research on coping emphasized an intra-individual, or contextual,

approach to the concept of coping. This approach has been the most popular in the

31

literature and embodies the idea that people have a repertoire of coping strategies from
which they select the best strategy to combat the demands of speciﬁc stressors. Thus,
this idea suggests that there is a commonality in coping responses among people facing
the same stressors. Additionally, coping strategies are thought to adapt to the demands of
the stressor and are thus involved in a dynamic process between the person and the
stressor (Lazarus & Folkman, 1984). An alternative approach that has risen out of trait
theories Of personality is the inter-individual approach, sometimes referred to as the
dispositional approach.

Most contemporary theorists recognize the complementary strengths of both the
dispositional and contextual approaches. Person and situational factors are likely to play
a role in normal daily stressors that people experience. Parker and Endler (1996), suggest
that “life-threatening or extreme situations typically permit only a narrow range of
possible coping responses” (p. 10). Having a child with a chronic disability may qualify
as an extreme situation whereby Situation-speciﬁc coping is most relevant. Thus, it is
important to separately examine the coping strategies employed by parents of children
with PDDS, ADHD, and no DD. Moreover, the unique coping proﬁles among parents
from each diagnostic group may account for the differing outcomes reviewed earlier
among parents of children with DDS and between parents of children with DDS versus no
disability. This research will attempt to identify Shared coping strategies among parents
of children with DDS as well as unique strategies used by parents of children with PDDS.
Additionally, this research will examine if the same relationships between coping
strategies and components of parent well-being occur across all parent groups or if types

of coping are differentially effective across different parent groups.

32

Organization of C oping. Early coping research organized coping strategies into
styles based on the focus of action: emotion-focused and problem-focused. Problem-
focused coping, also known as active coping, involves strategies focused directly on
solving or reducing the problem at hand. Examples of problem focused coping include
parents seeking out resources to treat problems associated with their child’s disability or
working with the school board to obtain services for their child. Emotion-focused c0ping
describes a method of coping where the focus of action is on the management of
emotions associated with the problem. An overlapping dichotomy with emotion-focused
coping is active versus avoidant coping. Active coping is essentially the same as
problem-focused coping, however emotion-focused coping can be active or avoidant.
Avoidant coping is when a person avoids, withdraws from, or tries to escape from the
stressor situation. Blaming others or oneself for the child’s disability, retreating into
fantasies that the child will be cured, and substance abuse are examples of emotion-
focused avoidant coping. Examples of active emotion-focused coping would be when
parents practice relaxation techniques to manage distress associated with their child or
when parents seek emotional support from friends and family to release feelings of
distress associated with having a child with a chronic disability.

Although useful at a theoretical level, reliance on such broad categories such as
coping styles limits the clinical utility of stress and coping research (Zeidner & Saklofske,
1996). Reliance on broad categories has likely contributed to the small and disappointing
effect Sizes in coping research (see Zeidner & Saklofske, 1996 for review). Each coping
style is comprised of various cognitive and behavioral strategies describing what people

do to combat stressors. A particular coping style may include strategies that are

33

effectively different from one another, thereby resulting in misleading ﬁndings in
research. For example, emotion focused coping could involve positive reinterpretation or
denial, each of which could result in very different outcomes. The focus of evaluation
must be on more Speciﬁc behavioral and cognitive strategies used by people in response
to stressors.

Measuring Coping. Measurement of coping has faced the numerous difﬁculties
described thus far: reliance on broad coping styles versus speciﬁc strategies, inter-
individual versus intra-individual scales, and tapping theoretically relevant constructs. A
popular measure of coping styles is the Ways of C oping Scale (WAYS; F olkman &
Lazarus, 1980, 1985). The most recent edition of the measure consists of 50 thoughts or
behaviors directed at managing stressful events. The items were designed to tap either
problem-focused or emotion-focused coping, although more than 2 factors have been
extracted using factor analytic techniques. Current use of the measure relies on the 8
empirically derived scales by Folkman and Lazarus (1988): Confrontive Coping,
Distancing, Self-controlling, Seeking Social Support, Accepting Responsibility, Escape-
Avoidance, Planful Problem-solving, and Positive Reappraisal. The WAYS is
considered to be a measure of dispositional coping because it asks respondents to report
how they generally cope with stressful Situations.

The most salient critique of the WAYS is that the dimensions are atheoretical and
fail to account for relevant coping strategies that people use to combat problems.
Research has identiﬁed varying factor structures by sample and by stressor (Carver,
Scheier, & Weintraub, 1989). Conﬁrmatory factor analysis has failed to replicate the 8

dimensions that Folkman and Lazarus (1988) put forth (Edwards & O'Neill, 1998). The

34

validity and applicability of the 8 dimensions is thus questionable. Contributing to these
varying results in factors is probably that people responding to items on the WAYS may
be thinking of differing stressful Situations. As discussed earlier, people may respond to
different Situations with different coping strategies. Another critique relates to the
conceptualization of social support. Some have argued that social support is better
conceptualized as a resource factor rather than a coping factor (Parker & Endler, 1992).
The social support dimension of the WAYS also does not capture the multiple functions
of social support, such as solving problems, obtaining information, and venting emotions
(Schwarzer & Schwarzer, 1996).

In response to these various criticisms of the WAYS, Carver et al. (1989)
developed the COPE based on 13 dimensions derived from existing literature as being
relevant to coping practices: active coping, planning, suppression of competing activities,
restraint coping, seeking social support for instrumental reasons, seeking social support
for emotional reasons, positive reinterpretation and growth, acceptance, turning to
religion, focus on and venting of emotions, denial, behavioral disengagement, mental
disengagement, and alcohol-drug disengagement. The instrument consists of 60 items
and can be used to tap situation Speciﬁc or general / dispositional coping. A brief version
of the COPE, with Slightly modiﬁed scales, has also been developed (Carver, 1997).

Coping Effectiveness. Coping can be effective or ineffective in managing
problems associated with stressors. Active/problem-focused coping is often thought of as
better than emotion-focused coping. However, evaluation of coping must take into

account adaptational outcomes. Coping effectiveness Should be evaluated based on the

35

degree to which a person experiences resilience from negative outcomes and achievement
of psychological well-being.

Both emotion and problem-focused coping strategies serve valuable and
reciprocal purposes. Whereas emotion-focused coping serves to manage emotional
experiences related to a stressor and can in turn place a person in a better state of mind to
engage in problem solving, removal of the stressor Situation via problem-focused
strategies also serves to alleviate emotional distress. It follows that people use a mixture
of coping strategies to combat different stressors and this iS especially true for complex
stressors (Zeidner & Saklofske, 1996). Having a child with a chronic disability
represents a complex stressor where it would be expected that emotion and problem
focused coping strategies would Simultaneously used.

That being said, coping effectiveness is Situation speciﬁc. Distancing and
emotion focused strategies can be effective in Situations where the source of distress is
unclear, there is a lack of knowledge or ability to solve the problem, and when the
situation is unalterable (Lazarus & Folkman, 1984). However, active problem solving
tends to be more effective in situations that are ameliorable (Lazarus & F olkman, 1984).
In terms of childhood disabilities, both problem-focused and emotion-focused coping
strategies may be effective. Disorders such as ADHD and PDD generally cannot be
cured, suggesting that emotion focused coping might be effective. However, various
methods can be used to effectively treat behavior problems and social Skills problems
among children with ADHD and PDDS. Thus parents who actively problem-solve

around these symptoms may have more positive outcomes.

36

Most research on coping among parents of children with disabilities has looked at
broader styles rather than speciﬁc strategies. Additionally, this research tends to rely on
dispositional measures of coping such as the WAYS. This reliance on broad deﬁnitions
and general rather than situation-speciﬁc coping has likely contributed to the varying and
confusing ﬁndings related to outcomes.

Using the WAYS, several researchers have found that reliance on Escape-
Avoidance coping is positively correlated with depression, social isolation, and family
strain among parents of children with PDDS (Dunn, Burbine, Bowers, & Tantleff—Dunn,
2001; Sivberg, 2002). Dunn et al. (2001) also found negative correlations between
Confrontive Coping and depression and between Positive Reappraisal and social isolation.
Dunn et al. (2001) was able to conclude that coping moderates the relationship between
reported life stressors among parents of children with autism and parent outcomes. In a
study of parents of children with various disabilities (mental retardation, learning
disabilities, or emotional/behavioral disorders), Malka and Dee (1991) found that parents
of children with disabilities were more likely than parents of children without disabilities
to rely on an avoidant coping style, which in-tum predicted negative affect in the prior
group.

Hastings, Kovshoff, Brown, Ward, Espinosa, and Remington (2005) used
principal components factor analysis with verimax rotation to extract 4 factors from
Carver’s (I997) brief COPE inventory (situational format): Active Avoidance Coping,
Problem-Focused Coping, Positive Coping, Religious/Denial Coping. In order to ﬁt in
this rubric of factors, 2 items from the original inventory and some of the original coping

dimensions were collapsed across the 4 factors. Hastings et al. (2005) found moderate to

37

large positive correlations between Active Avoidance coping and anxiety, depression,
and stress. Positive Coping (use of humour, positive reframing, acceptance, and
emotional social support) was negatively correlated with depression, and
Religious/Denial was positively correlated with depression. Contrary to their hypothesis,
Problem-focused coping was not related to any of the three outcomes.

The primary problem with Dunn et al. (2001), Malka and Dee’s (1991), and
Sivberg’s (2002) research is that they relied on dispositional measures of broad coping
styles. It is unclear based on their methodology which stressors in their lives were
referred to when answering the coping questionnaire. Thus, neither the conclusion that
an escape-avoidance style is ineffective at all times nor the conclusion that an escape-
avoidance style is ineffective for parents faced with stressors associated with having a
child with a PDD can be made. Although Hastings et al. (2005) measured coping related
to stressors associated with having a child with PDD, they collapsed the speciﬁc
dimensions of the COPE into broad coping styles using exploratory factor analytic
techniques.

The broad coping styles used in these prior studies make it difﬁcult to derive
Speciﬁc clinical interventions from the results. For example, the deﬁnition of confrontive
coping is the aggressive / impulsive efforts to alter the stressor situation at hand; it is
unclear how this deﬁnition might be translated into interventions for depression.
Similarly, Active Avoidance coping includes substance use, behavioral disengagement,
self-blame, and venting of emotions; it is unclear which of these more Speciﬁc strategies
relates to negative outcomes. The operationalization of religious coping as being in the

same factor as denial is also questionable.

38

Additional problems with the above research are that the assessed outcome
dimensions fail to take into account a complete psychological well-being model. Lack of
control groups in the Dunn et al. (2001) and Hastings et al.’s (2005) research also limits
inferences about the unique implications of the results for parents of children with PDDS
and limits the ability to address why parents of children with PDD experience increased
distress in relation to other parents. Finally, the researchers failed to control for socio-
demographic variables.

Pakenham et al. (2005) surveyed mothers of children with Asperger syndrome
(IO—12 years old) using the stressor-speciﬁc version of the COPE as a predictor of social
adjustment, depression, anxiety, and subjective physical health. Hierarchical multiple
regression where family income, maternal age, gender of the child, severity of the
stressor, other life stressors, and quality of social support were entered as covariates
indicated that only Behavioral Disengagement signiﬁcantly predicted depression;
prediction of anxiety approached Signiﬁcance. They found no correlations between
coping and social adjustment or subjective physical health status after controlling for said
variables. Similar to the previously reviewed studies, they failed to ﬁnd a relationship
between problem-focused coping strategies and adjustment. Pakenham et al. (2005) also
failed to include a control group or measure more positive aspects of psychological well-
being.

Research comparing coping proﬁles of parents of children with PDDS to other
groups of parents has indicated differential coping patterns in conjunction with different
mental health outcomes, suggesting that coping may be a moderator of outcomes.

However, not all studies tested this moderator effect. Donovan (1998) found that

39

mothers of adolescents with autism are less likely to cope by maintaining a social support
system, self-esteem, and maintaining their own psychological stability than were mothers
of adolescents with mental retardation. Rodrigue, Morgan, and Gefﬂcen (1990) found
that mothers of children with autism and Down syndrome relied more on wish-ﬁilﬁlling
fantasy, self-blame, and information seeking (6-factor structure of WAYS) than mothers
of normally developing children and that mothers of children with autism relied less on
cognitive restructuring than mothers of children with Down syndrome. It is difﬁcult to
make sense of these ﬁndings, as neither Rodrigue et al. (1990) nor Donovan (1998) relate
coping styles with outcomes. Sivberg (2002) found that parents of children with PDDS
used withdrawal coping strategies (Distancing and Escape dimensions of WAYS) more
frequently than parents of children without PDDS. Social support, self-control, and
problem solving were used more frequently by parents of children without PDDS. Recall
that Sivberg (2002) found that escape coping moderated family strain in the PDD group.
It is unclear if social support, self-control, and problem solving were related to outcomes
among the PDD group of parents because the researchers did not do this analysis. Across
groups, however, these methods of coping were unrelated to family strain, purpose in life,
perception of the world to be comprehensible,perceived manageability of problems, and
perceived meaning in life.

Using a combined descriptive and empirical research design, Tunali and Power
(2002) found that mothers who successfully coped with having a child with autism had
redefined what constituted fulﬁllment in their lives. Whereas the only positive correlate
of life satisfaction among parents of children without autism was the degree of

understanding of the child’s behavior, life satisfaction among parents of children with

40

autism was correlated with leisure activities with family, understanding of the child’s
behavior, rated importance of understanding of the child’s behavior, rated importance of
being a successful parent, stronger orientation to home than career, and a belief that other
mothers Should stay at home with their children rather than work outside of the home.

It is difﬁcult to draw conclusions from the existing coping research on parents of
children with PDDS due to reliance on different coping measures, reliance on broad
coping styles, and differing controls variables across studies. Overall, it appears that
parents of children with PDDS rely more heavily on emotion-focused and avoidant
coping strategies than parents of typically developing children and that these styles of
coping are in-turn related to depression, anxiety, and distress. Findings regarding the
effectiveness of problem-focused types of coping are inconsistent, with only one study
ﬁnding that Confrontive Coping is related to less depressive symptoms, but the rest
ﬁnding no relationship between any of the positive coping styles and parent adjustment.
Positive reappraisal, redeﬁning what is important in life, and Positive Coping appear to
protect against depression and to promote social adjustment and life satisfaction. These
ﬁndings are highly tentative due to varying use of controls for relevant demographic and
child variables which, as reviewed earlier, impact parent adjustment. Most of the studies
rely on dispositional measures of coping rather than situation-speciﬁc measures, limiting
implications that might be made about how Speciﬁcally to intervene and where. Lack of
appropriate control groups has also limited the utility of the coping research.

Religious Coping. The low prevalence of research on religion in psychology is a
glaring oversight in the investigation of the human experience. Earliest accounts of

human history reveal that an enduring search for meaning in life and a belief in a higher

41

power has existed as part of human cultures around the world. AS reviewed, narrative
accounts by parents of children with DDS indicate Spiritual growth as an important
outcome of their parenting experience. None of the above reviewed coping research
looked at religious coping, with the exception of Hastings et al. (2005) and Pakenham et
al. (2005), who took a peripheral look at religious coping as being among many other
strategies.

Hastings et al. (2005) conceptualized religious coping as being in the same factor
as denial and found that this factor was positively related to depression. The
conceptualization of religion as being in the same factor as a strategy typically thought of
as unproductive and related to negative outcomes reﬂects a bias that should not be
present in research. It is unclear from their ﬁndings if either denial or religious coping
separately accounted for the variance in depression. Pakenham et al. (2005) found no
correlation between religious coping and any of their outcome measures. Initially, these
ﬁndings appear to be at odds with parent narrative accounts. However, neither Pakenham
et al. (2005) nor Hastings et al. (2005) measured personal growth, spiritual growth, or
life-satisfaction- all outcomes that might be theoretically linked to religious coping.
Additionally, both sets of researchers used items from the COPE inventories (Carver,
1997; Carver et al., 1989) to measure religious coping. The items may be too broad to
capture the complex ways that people turn to religion to cope with stressors.

Religion can have many positive and negative functions. Pargament, Koenig, and
Perez (2000) describe ﬁve functions relevant to coping: 1) religion as a framework for
understanding and interpreting meaning 2) religion as a means to achieve a sense of

control and mastery 3) religion as a source of comfort 4) religion as a source to develop

42

intimacy and kinship with others 5) use of religion as a support through life changes.
Pargament and colleagues (2000) also suggest potentially destructive methods of
religious coping, including redeﬁning stressor Situations as punishment from God or by
demons, expressions of dissatisfaction of one’s religion, and expression of discontent
with God or a Higher Power.

Tarakeshwar and Pargament (2001) conducted the only study to include a
comprehensive measure of religious coping that incorporates positive and negative
categories by which religion could impact parental well-being (RCOPE; Pargament et al.,
2000). After controlling for number of problems parents experienced, age of the child at
diagnosis, severity of perceived stress, and global religiosity, Positive Religious Coping
predicted religious / spiritual growth and stress-related growth, but not depression or
anxiety. No signiﬁcant correlations were found between Negative Religious Coping and
outcomes.

Unfortunately, Tarakeshwar and Pargament’s (2001) measures of psychological
well-being were limited and primarily deﬁcit oriented. Although they included a
religious growth measure, wording was biased for use with Christian populations. For
example, the questionnaire included the words “God” and “church.” Wording of the
RCOPE is similarly biased for use with people ascribing to monotheistic religions. These
measures likely alienated people who are self-described as being Spiritual or who belong
to polytheistic religious groups. In fact, 28.6% of their sample reported being afﬁliated
with a religion other than protestantism, catholicism, or Judaism and 2.4% of the
participants were Jewish. Formatting of the questions may thus have contributed to Type

11 error.

43

Causal Attributions. The role of causal attribution, conceptualized here as an
internal coping strategy, for the child’s disability has yet to be investigated in the research
on parents of children with PDD. Despite decades of fervent research on etiology,
presentation, and treatment, there is much about PDD that remain a mystery. At present,
research has supported genetic and neurodevelopmental inﬂuences on the development of
the disorders (Rutter, 2005) however the exact etiology remains unknown. The
etiopathology of ADHD is similarly vaguely understood.

Combined with the poor dissemination of this research to parents and
professionals, the continued lack of a consistent treatment that would cure PDD or
ADHD leaves parents vulnerable to unsupported treatments claiming to offer a cure
(Green, Pituch, Itchon, Choi, O'Reilly, & Sigafoos, 2006; Jacobson, F oxx, & Mulick,
2005). Alternative treatments include chelation therapy, chiropractic treatments, sensory
integration therapy, megavitamin therapy, elimination diets, EEG neurofeedback, and
with holding vaccinations (Jacobson et al., 2005; Schechtman, 2006). These treatments
are based on theories that developmental disabilities are caused by metabolic deﬁciency,
pollution, overgrowth of yeast in the colon, prenatal exposure to teratogens, spinal mis-
alignment, mercury poisoning via vaccinations, and allergies (Jacobson et al., 2005;
Kozlowski, 1992). Although occasionally helping a few, these treatments generally do
not help children with PDD or ADHD.

The impact of the positive causal attribution that alternative treatments offer has
yet to be explored in relation to parental adjustment. Knowing what caused the disorder
and beliefs that the child will be cured may help parents gain a sense of control over their

child’s treatments and over their own lives as a whole. Conversely, ascribing the

44

disability to scientiﬁcally unsound causes with therapies that probably will not help the
child, are expensive, and that could be dangerous for the child could also be harmful to
parental well-being in the long run. Given the high frequency of use of these alternative
treatments (Green et al., 2006), it is important to investigate the impact of the treatments
on children but also the parents who choose to implement these treatments. The
following paragraphs review evidence suggesting that causal attribution may be a crucial
component to parent psychological well-being.

A sense of failure and guilt over having produced a “damaged child” is common
(Naseef, 2001; Whelan and Hudson, 1987). Blaming of parents, particularly mothers, is
most prevalent for disorders that have ambiguous etiology, such as PDDS and ADHD.
Parents of children with PDDS in particular may experience strong guilt over having
caused their child’s disability (Rodrigue et al., 1990). In fact, psychologists have
Speciﬁcally blamed mothers for their children’s autism. The legacy of mother blaming
was perpetuated by Bruno Bettleheim’s publication of The Empty Fortress: Infantile Autism
and the Birth of the Self (1967). Bettleheim’s ideas remained the dominant theory of
autism’s etiology throughout the late 19608 and 1970’s and mothers of children with
autism were shamed for failing their children. Although Bettleheim’s theories have been
largely discredited, the continued failures to ﬁnd the cause of autism results in lingering a
possibility that parents could have caused the disability. Although the medical model
offsets some of the blame away from parents of children with ADHD, poor parenting
continues to be a popular theory for the cause of behavior problems among children with
ADHD. Parents of children with ADHD are often blamed for their children’s behavior

problems.

45

Ambiguous situations have been identiﬁed in the stress and coping literature as
the most difﬁcult to adjust to due to the threat to personal locus of control (X- see Taylor
Textbook). One study supporting this trend among parents of children with DDS found
that parents reported more disrupted family harmony if their child had a DD of unknown
etiology versus Down syndrome (Perry, Harris, & Minnes, 2005).

Gray (20023) interviewed 53 parents of children (ages 5 — 26) diagnosed with
either high functioning autism or Asperger’s syndrome. He quotes a common experience
of being embarrassed as a parent when their child with autism acts out in public, yet
looks physically normal:

I can walk through shopping centre after shopping centre and no one

knows my child’s autistic or he’s got a problem. So, if he sees a drink

machine and he wants a drink, and I haven’t got the right change and he
stands there . . . and screams, ‘I want a drinkl’, it runs through my mind,

‘What must some people be thinking?’ . . . Do you say to them the reason

he’s carrying on like this is because he is autistic? . . . Actually, there were

times when I thought, ‘GOd! I wish he were Down’s syndrome’, because

people would leave me alone. They would see the Down’s syndrome [and]

know there was a problem. (Gray, 2002a, p. 743)

AS the quote above demonstrates, having a child who looks normal, but behaves
inappropriately can be especially distressing for parents. This experience is likely shared
between parents of children with PDDS and ADHD.

In sum, parental attribution of cause of their child’s DD may inﬂuence how they

adjust via personal and societal pathways. Particularly, knowing what has caused one’s

46

child’s disability may dispel feelings of guilt and blame, which have been categorized
under avoidant emotional coping. As reviewed earlier, avoidant emotional coping styles
tend to be related to increased depression, anxiety, and social isolation. Additionally,
knowing what has caused the disability may help parents regain a sense of control over
their lives. Even if attribution is to a false cause, it is possible that the false sense of hope
may improve parental psychological well-being as a whole.
External Resources and Supports

The literature on social support among parents of children with PDDS has
reported inconsistent results related to outcomes. Inconsistencies may be due to
measurement differences. Social support can be divided into 1) professional social
support, including various professional services directed at the child or the parent
(therapy,'educational services, respite care, psychiatric care) and 2) informal social
support (extended family, friends, spouse, children). Additionally, people may seek
social support for instrumental (informational, services) or emotional needs. Most
research has used measures that incorporate several types and uses of support to achieve a
general measure of social support. Using general measures, social support has been
found to be inversely related to anxiety and depression (Gray & Holden, 1992), positively
related to parental well—being (N achshen, 2005), and to be positively related to life
satisfaction (Milgram & Atzil, 1988) among parents of children with PDDS. Additionally,
social support has been found to moderate the relationship between child-related stressors
and social isolation such that presence of social support buffers the negative impact of

stressors on social relationships (Dunn et al., 2001).

47

Some researchers have taken a closer look at the role of sources and uses of social
support. This research has resulted in varying ﬁndings. When parents perceive that
family members care for and understand the child with PDD, support from these
members has been related to lower levels of anxiety and depression (Bitsika & Sharpley,
2004). Similarly, White and Hastings (2004) found that when informal social support
was viewed as helpful, it was associated with decreased anxiety, depression, and general
distress among parents of children with intellectual disabilities (most had autism).
Despite a majority of the sample reporting using formal social supports, neither number
of services nor perceived helpfulness of these services were related to parent depression,
anxiety, or distress in the White and Hastings (2004) study. Pakenham et al. (2005)
found that seeking social support for emotional reasons was related to poorer social
adjustment among mothers of children with Asperger syndrome, but unrelated to
depression or anxiety. Pakenham and colleagues found no relationships between seeking
social support for instrumental / practical support and any of their outcome measures.

These various ﬁndings may be explained by negative experiences often reported
by parents of children with DDS with informal and formal supports. In a qualitative study
of parents of children with DDS, 66.7% of parents found dealing with ﬁiends, family, and
neighbors on a day-to-day basis to be extremely stressful (Jones & Passey, 2005).
Parents reported experiencing lack of understanding by others and negative social
attitudes. In terms of formal social supports, 82.4% reported that dealing with doctors
and other professionals was extremely stressful. Parents perceived professionals to be

unsupportive, ‘talking above their heads,’ and to not listen to them.

48

Parents of children with DDS have less access to social supports than other
parents (Donovan, 1998; Gray, 2002a; Nachshen & Minnes, 2005). Social isolation is
likely due to a combination of avoidance of difﬁcult social Situations and others avoiding
them due to uncomfortable experiences with the child with DD. Further research on
social support among parents of children with PDDS using more speciﬁc measure is
needed to clarify how professional services and society may be more supportive of
parents, rather than an additional source of distress.

Perceived Closeness to Child

One major source of support for parents, or disappointment when not felt, is the
affection Shared with their child. The bond between a parent and his / her child is among
the strongest and important bonds that human beings form in their lifetime. Research has
yet to explore the role of this critical relationship as a resource for parents of children
with PDDS.

The role of parent-child closeness is especially relevant for parents of children
with PDDS. Impairments in social functioning among these children interfere with their
ability to form close reciprocal relationships with others, their parents included. Children
with PDDS are able to develop secure attachments (Rutgers, Bakerrnans-Kranenburg, van
,lJzendoorn, & van Berckelaer-Onnes, 2004). However, they are less likely than normally
deveIOping children to be securely attached and co-morbid mental retardation decreases
the likelihood of being securely attached. Expression of affection among children with
PDDS is different from normally developing children, making these behaviors less
recognizable. For example, children with PDDS are less likely to seek and maintain

contact with their parents and tend to avoid eye-contact. Instead, they may Show subtle

49

or apparently a-social behaviors (e. g. tugging on a parent’s shirt when anxious, engage in
self-stimulatory behaviors).

Parents of children with PDDS are less likely to feel close with their child with
PDD than parents of children with other DDS (Abbeduto et al., 2004). Although
Abbeduto et al.’s (2004) study was the only study to compare perceived closeness among
parents of children with PDDS compared to other parents, additional support comes from
related research. Parents of children with autism perceive their children to Show more
negative and less positive emotions in comparison to parents of normally developing
children (Capps, Kasari, Yirrniya, & Sigman, 1993). Conversely, prosocial behavior
among children with DDS is inversely related to maternal distress (Beck, Hastings, &
Daley, 2004).

The child with autism’s apparent retreat into his own world is an especially
difﬁcult characteristic for parents to cope with. In the only study to relate parenting
distress to child social behaviors, Kasari and Sigman’s (1997) found that child related
stress on the PSI was inversely related to social responsiveness during a play interaction.
Recall that the child—related stress measure on the PS1 is confounded with child behavior
problems, thus this ﬁnding can only be assumed to be tentative. Kasari and Sigman
(1997) also found that parents of children with autism who viewed their child to be more
difﬁcult in temperament were less likely to engage with their children in play and that
this relationship was not Signiﬁcant for parents of typically developing children or
children with mental retardation. This ﬁnding suggests not only relevance for child
outcomes, but also introduces that parent perceptions are especially relevant among

parents of children with autism.

50

Research on parenting resources must include assessment of the perceived
relationship between the parent and the child. This relationship may be especially

relevant to parent well-being among parents of children with PDDS.

51

This Stud\I
The organizing framework guiding this study was drawn from McCubbin and
Patterson’s (1983) double ABCX model and Perry’s (2005) model. A visual
representation of the theoretical is depicted in Figure 1. Speciﬁc aspects of this model
have been derived from review of the research and narrative literature on parents of
children with developmental disabilities.

Figure 1. Theoretical Model of Parent Psychological Adjustment

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Positive
I' ' ' ‘ Affect
Resources :
. I E
Family ' i Negative
Demographic I' _ - , Affect
Variables :
Parental i
Well-being
Child Related I Cognitive
Stressors : and
CopingI L ‘ ' ‘ ‘ Attitudinal
Strategies Wellbeing

 

 

 

 

 

 

Family and child characteristics are considered here to make-up a context within
which parents react. Family demographic variables represent the family context,
including socio-economic status and number of children in the household. Family
context was expected to inﬂuence parent-well-being and was theorized as being
independent of what the child brings to parents’ experiences.

The primary child related stressor of interest was the child’s diagnosis.
Participants recruited had children with either ADHD or PDD. Additionally, a
comparison group of parents of typically developing children was recruited to enable

differentiation of typical parenting experiences versus the unique experiences of parents

52

of children with DD. As found in prior research, the speciﬁc child characteristics such
as the child’s age, intellectual ﬁinctioning, communication skills, social skills, behavioral
problems, and attention problems were each also expected to inﬂuence parental well-
being.

The relationship between the family and child context variables to parent well-
being was expected to be moderated by external resources and internal coping factors.
Separation of the moderators into these two categories was a deliberate attempt to
facilitate intervention efforts by clearly delineating support needs at the parent-level or
the societal / service level. Resources of interest included the perceived closeness in the
parent-child relationship, professional services directed at the child and / or family,
emotional support from friends, and instrumental support from friends.

Coping strategies included parental causal attribution for the child’s disability and
coping strategies speciﬁc to parenting the child (positive religious coping, negative
religious coping, substance use, planning, causal attribution, behavioral disengagement,
venting, self-blame, active coping, denial, self distraction, humor, acceptance, and
positive reframing). Due to the large number of coping strategies measured in the scales
and risk for committing Type I error, several of the coping strategies were entered into a
principal components analysis to reduce the number of analyses. Derived factors were
driven by associations within the data as well as coping theories reviewed.

Research Questions and Hypotheses
1. Psychological well-being between groups:
a. The PDD parent group was expected to report the most depressive and

anxiety symptoms, followed by the ADHD group. Furthermore, the DD

53

groups combined were expected to Show more psychopathology than the
normal controls.

Based on literature suggesting that parents of children with PDD tend to
be socially isolated compared to other parents, it was expected that
Relations to Others would be most impaired among parents of children
with PDD after controlling for demographic variables.

With respect to Happiness and the remaining measures of cognitive and
attitudinal well-being, the literature is less clear so this aspect of the study

was exploratory.

2. The relationship between diagnostic status of the child and parent well-being was

expected to be moderated by coping and resource variables after controlling for

demographic variables.

a.

Positive religious coping, planning, active coping, use of humor, positive
reframing, and acceptance were each expected to buffer the impact of the
child’s diagnosis on parent depression and anxiety. In addition, these
aspects of coping were expected to positively relate to positive parent
well-being.

Of the parents of children with DD, it was expected that positive causal
attribution for their child’s disorder and belief in curability of this disorder
would predict less negative affect and better well-being. In particular, it
was expected that causal attribution among the DD groups would

positively impact environmental mastery.

54

c. Resource variables were expected to predict parent well-being such that
more support and closer parent-child relationships would predict increased
positive well—being.

Unique coping proﬁles across study groups:

a. Parents of children with DDS were expected to rely less on emotional and
instrumental sources of support than parents of typically developing
children and to use a larger repertoire of coping strategies than parents of
typically developing children.

. Relationship between child context and parental well-being:

a. Children with DD were expected to have more impairments in behavioral,
social, language, and emotional ﬁrnctioning in comparison to the typically
developing children. Extemalizing and internalizing problems were
expected to be Similar across children with PDD and with ADHD.
However, functional communication and social Skills were expected to be
more delayed on average among children with PDD.

b. The child context variables were expected to be related to parent
adjustment, such that more child problems would be associated with
increased negative affect and decreased positive affect and well-being.
Further, these child context variables were expected to moderate group
differences in psychological well-being.

Effectiveness of coping and resources across groups in managing parent well-

being:

55

a.

Based on currently limited treatments in managing symptoms of PDD in
comparison to ADHD, problems associated with PDD might be
considered something that parents just need to accept. Thus, it was
expected that parents of children with PDD relying on emotion—focused
coping strategies would experience more positive outcomes and that this
relationship would not be Signiﬁcant for the ADHD or normal parent
groups.

The quality of the parent-child relationship among parents of children with
PDD was expected to be among the strongest moderators of psychological

well-being.

56

Methods

Participants and Recruitment

Three parent groups were targeted for recruitment: 1) parents Of children with an
autism spectrum disorder, 2) parents of children with ADHD, and 3) a control group of
parents of children without any mental or physical health problems. Recruitment letters
were sent to elementary and middle schools, intermediate school districts, and Autism
and ADHD support groups across the state of Michigan. Additionally, controls and
parents of children with ADHD were referred by researchers from the Michigan State
University Attention study. The snowballing method of recruitment was also used, where
existing participants referred other potential participants to the study. Parents recruited
from schools and community organizations were given lottery entries to win a prize
(Apple iPod Nano, Palm Organizer, $50 Gift Card to Barnes and Noble, tickets to the
Statewide Autism and Resource Training Conference). Parents recruited from the
Michigan State University Attention Study were given $15 for their participation in order
to provide sufﬁcient incentive because to this population that had received ﬁnancial
compensation when they participated in an earlier study of ADHD.

A total of 91 parents from 66 families were recruited, consisting of 65 mothers
and 26 fathers (this includes 3 adoptive mothers, 4 adoptive / step-fathers, and 4
caregivers who identiﬁed as being a major parental ﬁgure for the child). F orty-eight of
the participants were mother-father pairs reporting on the same child. Table 1 outlines
speciﬁc participant counts per study group. In some cases, both parents of the same child
were included. Table 2 indicates speciﬁc characteristics of each group in the sample.

Mean age of parents was 40.54 years (SD = 5.78). At the time of participation in the

57

study, 85% Of the parents were married, 10% were divorced, 4% were single, and 1%
were separated. Socioeconomic status was generally high, with 37.4% having graduated
from a 4-year college and an additional 33.0% having attained a graduate or professional
degree. There were signiﬁcant differences between groups in mean household income (F
(2, 85) = 4.20, p g .05) such that the control group had a higher mean income than the
other two groups, which had comparable income levels. Employment status was 54.4%
full time, 13.3% part time, and 25.6% identiﬁed as being homemakers. Including the
child in question, mean number of children in the household was 2.39 (SD = 1.03), with
no signiﬁcant differences across study groups (F (2,86) = 1.23, p = .296). Representation
of ethnic diversity in the sample was comparable to that in the general population in
Michigan (87.5% Caucasian, 3.4% Hispanic / Latino, 5.7% African American, 1.1%
Asian, 2.3% Other). The majority of participants endorsed a religious afﬁliation (22%
Catholic, 18.9% Protestant, 24.4% Christian / Non-denominational, 3.3% Baptist, 18.8%
other), with only 12.2% indicating no religious afﬁliation.

A total of 66 children ages 6-12 years old (M = 9.03, SD = 1.72) were reported on
for the study. Table 3 details of the children included in the study. Intellectual testing
results were not available for all children, however there was a signiﬁcant correlation
between parent’s perception of the child’s intelligence and actual test scores (r = .967, p
_<_ .05). Thus, parent ratings of their child’s perceived intelligence were used for analyses
in substitution for actual intelligence testing scores. As expected, there were signiﬁcant
differences between groups in children’s intelligence such that the control group was
reported to be the most intelligent (average parent rating suggested functioning in the

Above Average range), followed by the ADHD group, then the PDD groups where

58

average parental ratings suggested functioning in the Average range, F (2, 62) = 8.84, p
g .01. AS previously described, intelligence testing of children with PDD has
questionable validity and reliability. Research indicates that speech development is a
strong predictor of child outcomes in children with PDD (Sallows & Graupner, 2005).
Thus, BASC-2 functional communication scores were also used to estimate the
developmental functioning of children across groups. One-way analysis of variance
(ANOVA) indicated signiﬁcant between group differences in mean functional
communication score (average parent and teacher reports) across groups, F (2,62) =
52.39, p 5 .01. Post-hoe analyses indicated the PDD group not only had signiﬁcantly
underdeveloped Functional Communication skills relative to the other two groups, mean
development of this skill was in the clinically delayed range (M = 28.57, SD = 9.15). The
ADHD group had more delayed Functional Communication skills than the typically
developing children.

Of the 26 children in the PDD group, 19 had a diagnosis of Autism and 7 had a
diagnosis of Aspergers Disorder. Additional comorbid diagnoses were ADHD (n = 4),
Sensory Integration Disorder (n = 2), and neurological disorders (n = 2). Using the
cutoff score of 28 on the CARS-P, 84.6% of the children in the PDD group met the
Autism cutoff per parental report. Children in the PDD group had either a medical
diagnosis of Autism, Asperger’s Disorder, or Pervasive Developmental Disorder Not
Otherwise Speciﬁed or a special education designation of Autism Impaired from the
Michigan Special School district per their parents’ report. Diagnoses were conﬁrmed for
18 children by psychological evaluation and school reports. Criteria for Autism Impaired

are similar to criteria in the DSM-IV for PDD and the majority of those given a

59

designation of Autism impaired meet criteria for a PDD. Recruitment of parents of
children from public schools was a critical aspect of obtaining a demographically
representative sample of parents of children affected with a PDD. Unlike children
referred by medical or psychological clinics who are more likely to come from higher
socioeconomic backgrounds, children involved in the Special education system represent
a full range of socioeconomic backgrounds. The sample had the expected gender
representation for a diagnosis of autism (88% male).

The 20 children (85% male) in the ADHD group had a parent reported medical
diagnosis of ADHD. There was no speciﬁc Special education category for these children;
however obtaining a medical diagnosis for ADHD is more generally accessible by people
from all socioeconomic backgrounds. As expected, composite ratings by parents and
teachers of the children in the ADHD group on the BASC-2 indicated clinically
signiﬁcant problems with attention (M = 67.49, SD = 7.60).

A total of 42 teachers (21 for the PDD group, 10 for the ADHD group, and 11 for
the Control group) provided ratings for the children’s functioning in school. All teachers
knew the child for at least 3 months at the time of participation in the study. Teachers

were given $10 for their participation in the study.

Measures

Demographic information and child’s developmental history was gathered using
the Social History form. Also included in this form were questions about parent
perceptions of the child’s intellectual functioning, causal attribution, and whether the

parent believed the child’s disorder could be cured. All questionnaires used in this study,

60

ml

with the exception of the Behavior Assessment System jar Children- 2 Edition are in
Appendix A.
Child Related Stressors

The Behavior Assessment System for Children- 2"“ Edition (BASC-2; Reynolds &
Kamphaus, 2004) is a rating scale with a parent rating form (160 items) and companion
teacher rating form (139 items) for children. The Child (ages 6-11) and Adolescent (ages
12-21) forms were used in this study. Five scales were used for this study: Social Skills,
Functional Communication, Extemalizing Behaviors, Intemalizing Behaviors, and
Attention Problems. All of these scales have acceptable internal consistency and test-
retest reliabilities. The Functional Communication scale assesses the child’s ability to
effectively express and communicate ideas. The Social Skills scale assesses for pro-
social behaviors and politeness. The Extemalizing Behavior scale measures conduct
problems, aggression, and hyperactivity. The Intemalizing Behaviors scale measures
anxiety, depression, and behavioral withdrawal. Attention Problems measures the child’s
attentional functioning in his / her environment.

The Childhood Autism Rating Scale-Parent form (CARS-P; Bebko,
Konstantareas, & Springer, 1987) was used to assess autistic symptom severity among
children with PDD. The CARS-P is a direct adaptation of the Childhood Autism Rating
Scale (CARS; Schopler, Reichler, Devillis, & Delay, 1980) to make the scale appropriate
for self-administration by non-professional parents. The cutoff score for a positive screen
of autism on the original CARS is 30. However, due to the CARS-P having 14 items

instead of 15, the cutoff score of 28 was used for this study. Parents in this study were

asked to rate the child’s behaviors on the 14 domains corresponding to autism

61

symptomology based on a 4-point scale (1 = normal for chronological age, 2 = mildly
abnormal, 3 = moderately abnormal, 4 = severely abnormal). The scale has been used in
previous research as a scale of autism severity and has been related to parental distress
(Freeman, Perry, & Factor, 1991; Tobing & Glenwick, 2002). Research on psychometric
properties of this instrument has yet to be completed. lntemal consistency of the total
score in this sample was appropriate (a = .94 for entire sample, a = .88 for children with
pervasive developmental disorders).
Coping Strategies

The brief COPE (Carver, 1997) consists of 28 self-report items assessing 14
dimensions of coping: active coping, planning, positive reframing, acceptance, humor,
religion, using emotional support, using instrumental support, self-distraction, denial,
venting, substance use, behavioral disengagement, and self-blame. Wording was
changed for easier readability (i.e., change of “I’ve been” to “1”). Instructions were
altered such that parents responded according to how they currently deal with stressful
situations related to the target child. The social support items are considered resource
variables rather than coping variables in the theoretical model. An altered version of the
Brief RCOPE (Pargament, Smith, Koenig, & Perez, 1998) was used to assess religious
coping. Each of the l4-items represents different ways that people use religion to
manage challenging situations. These methods include seeking a spiritual connection,
seeking Spiritual support, collaborative religious coping, religious forgiveness,
benevolent reappraisal, puriﬁcation, focusing on religion, spiritual discontent,
punishment reappraisal, interpersonal religious discontent, demonic reappraisal, and

questioning the power of a higher power. Items are divided into positive and negative

62

religious coping subscales. Cronbach’s alphas ranged from .87 to .89 for the positive
religious coping dimension and from .67 to .81 for the negative religious coping
dimension. Original items were re-worded for this study to accommodate varying
religious backgrounds (e. g. “God” was changed to “my God or a Higher Power”).
Resources and Supports

A measure of formal social supports was developed based on Dunst, Jenkins, and
Trivette’s (1994) Family Support Scale (FSS) where parents indicate whether they
received any of a list of supports and the degree to which those supports were helpful.
The original scale consisted of 5 different professional services, which does not capture
the diversity in services that parents of children with developmental disabilities receive.
Thus, a new measure, the Professional Services and Support Questionnaire (PSSQ), was
created for this study. In it, parents indicated if they or their child received any of a list
of formal services and the degree to which they perceived the services to be helpful.

Bengtson and Black’s (1973) Positive Affect Index was used to measure the
degree to which parents perceive their relationships with their children to be
characterized by trust, love, and understanding. The scale consists of 5 questions asking
parents how much they feel positive affect toward their child and 5 questions asking how
much they perceive their child expresses positive affect toward them. An additional item
asking about degree of closeness parents feel their relationship is with their child. Each
item has 6 choices ranging from “not at all” to “extremely much.” This measure has been
used in previous studies of parents of children with a variety of diagnoses (Abbeduto et

al., 2004; Orsmond et al., 2003).

63

Psychological Well-being

The Center for Epidemiological Studies Depression Scale (CESD; Radloff, 1977)
is a widely self-report depression scale designed to measure depressive symptoms in
community samples. The scale consists of 20-items that have shown to have good
internal consistency in a general adult population (a = .85). Items tap 6 dimensions of
depression: depressed mood, feelings of guilt and worthlessness, feelings of hopelessness
and helplessness, psychomotor retardation, loss of appetitive, and sleep disturbance. The
scale is widely used in clinical and research settings and takes approximately 5 minutes to
complete. The standard cutoff score for a Signiﬁcant screen for depression is 16.

The Beck Anxiety Inventory (BAI; Beck, Epstein, Brown, & Steer, 1988) is a 21-
item self-report measure of anxiety symptoms for adults that was designed to
discriminate between anxiety and depression. The scale is widely used in clinical and
research settings and takes approximately 5-10 minutes to complete. Internal consistency
has been found in a non-clinical sample to be excellent (or = .90 - .91) (Creamer, Foran, &
Bell, 1995).

The Subjective Happiness Scale (Lyubomirsky & Lepper, 1999) is a 4-item
measure of global subjective happiness. Internal consistency of the instrument is good to
excellent (a = .79 - .94). Responses are on a 7-point Likert scale ranging from unhappy
to very happy.

The Satisfaction with Life Scale (Diener, Emmons, Larson, & Grifﬁn, 1985) is a
5-item measure of global satisfaction with life. Internal consistency is good (a = .87).
Responses are on a 7-point Likert scale ranging from “Strongly Disagree” to “Strongly

Agree.”

64

Attitudinal aspects of psychological well-being were measured using the
Environmental Mastery, Personal Growth, Purpose in Life, and Self-Acceptance scales of
Ryffe and Keyes’ (1995) Scales of Psychological Well-being. This study used the 9-item
version of the scales, which have good internal consistency (a = .71 - .82).

Van Dierendonck’s (2004) Spiritual Well-being scale will be added to the
attitudinal assessment protocol. Van Dierendonck took items from Ellison’s (1983)
Spiritual Well—being Scale and Howden’s (1992) Spiritual Assessment Scale to compile
the lO-item scale that will be used in this study. Internal consistency is appropriate for
the Inner Resources Scale (a =.76) and the Relationship with a Higher Power Scale (a
= .87) of the measure. This study aggregated the two subscales into a Single Spiritual

Well-being measure.

65

Results

Principal Components Analysis
Coping and Resources

Principal components analysis was used to reduce 10 Brief Cope Dimensions
(self-distraction, active coping, denial, substance use, behavioral disengagement, venting,
positive reframing, planning, humor, acceptance, self-blame) down to fewer components
in order to reduce number of analyses and associated risk for Type I error. The 20
corresponding items were subjected to principal components analysis using SPSS
Version 15 (see Table 4 for factor loadings). Inspection of the inter-item correlation
matrix indicated that many of the coefﬁcients were .3 and above, indicating
appropriateness of the principal components analysis method. Additionally, the Kaiser-
Meyer—Oklin value of .65 exceeded the recommended value of .6 and Bartlett’s Test of
Sphericity reached statistical signiﬁcance (p = .00), further supporting the factorability of
the correlation matrix. Examination of the screeplot using Kaiser criterion showed 6 - 8
components, however a large drop was Shown in variance explained after 2 components.
Analyses were conducted where 8, 5, 4, and 3 components were forced and Varimax
rotation was performed to aid interpretations. The three-component solution made most
theoretical sense and accounted for 44.39% of the variance, with component 1
contributing 18.23%, component 2 contributing 17.05%, and component 3 contributing
9.11%. Component 1 consisted of the items Carver (1997) designated as active, planning,
and positive reframe items. This component was termed Active-Positive Coping for thus
study. Component 2 consisted of items originally designated as self-distraction, denial,

behavioral disengagement, venting, and self-blame items. This component was termed

66

Avoidant-Aggressive COping. Component 3 consisted of items originally designated as
Substance Abuse and Humor items. Although considered to be a positive coping strategy
to be able to laugh at one’s troubles (Roussi, Krikeli, Hatzidimitriou, & Koutri, 2007),
wording of the humor items may have tapped insensitivity to the child’s disability and
poor judgment that similarly occurs when under the inﬂuence of drugs and alcohol. This
component was termed Substance Abuse / Humor for this study.

The Brief R-COPE scale and Brief COPE Religion items were combined in a
factor analysis due to the investigator’s Speciﬁc interest in examining the role of religious
coping on parental well-being (see Table 5 for factor loadings). Examination of inter-item
correlations, Kaiser-Meye-Olkin measure of sampling adequacy (.88), and Barlett’s test
of Sphericity (p = .00) indicated that principal components analysis was appropriate. The
screeplot using Kaiser criterion and number of eigenvalues over 1 indicated that
extraction of 2-3 factors was appropriate. Principal components analysis with Varimax
rotation and forcing 3 and 2 components were conducted. The 2-component structure
made the most theoretical sense given the positive and negative valence of the
corresponding questions. The 2-component structure accounted for 68.43% of the
variance, with component 1 accounting for 47.13% and component 2 accounting for
21.29%. Items in component 1 were a composite of the Positive Religious coping items
identiﬁed by (Pargament, Smith, Koenig, & Perez, 1998) and the 2 Religious coping
dimension items delineated by Carver (1997). Component 1 was thus termed Positive
Religious Coping for this Study. Items in component 2 consisted of the Negative
Religious coping items identiﬁed by Pargament, Smith, Koenig, and Perez (1998) and

was so termed for this study.

67

Resources and Supports

High correlations between the Emotional Social Support and Instrumental Social
Support items on the Brief COPE (r = .63 - .78, p i .01) and extraction of only one
component using principal components analysis supports combining these items into a
Single Social Support composite. The scale reliability for this composite was appropriate
(at = .90).
Cognitive and Attitudinal Well-being

Due to the large number of analyses planned for this study, it was not possible to
examine each of the 4 dimensions of the Rjyfe ’s Scales of Psychological Well-being used
in this study (Environmental Mastery, Personal Growth, Purpose in Life, and Self-
Acceptance). Instead, general Well-being was measured by combining the 4 dimensions.
This was based on a factor analysis conducted by the authors of the scale (Ryffe & Keyes,
1995) Showing that dimensions of the scale joined together to form a Single higher-order
factor of well-being. High correlation with the Life Satisfaction Scale also supported
creating a General Well-being scale by re-scaling the items to a consistent 6 point Iikert
scale and aggregating them such that each of the Ryffe scale dimensions and the Life
Satisfaction Scale had a equal weighting in the overall Well-being scale. Reliability
statistics for this combined scale Showed good internal consistency for the sample in this
study (or = .94). The Scales of Spiritual Wellbeing were maintained as a separate measure
of well-being due to the researcher’s interest in this speciﬁc aspect of well-being that has
yet to be explored among parents of children with developmental disabilities.

A diagram of the scales used for this study positioned with the corresponding

aspects of the theoretical model guiding this study is depicted in Figure 2.

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Descriptive Statistics

 

Prior to conducting analyses, the data were examined for data entry errors,
missing values, outliers, and adherence to univariate assumptions of normality. Data
cleaning was completed using a double data entry system with different people entering
the same data into separate SPSS databases. An Excel program was then written to
compare discrepancies in entries. All inconsistent entries were corrected. Several items
were left blank by participants for the Scales of Psychological Well-being. For
participants where only 1 item was skipped (n = 5), the score was imputed using that
participant’s average score on items in the same dimension. Dimension scores were not
calculated for participants who skipped more than 1 item on the scale (n = 4). No data
were imputed for the BAI or CESD because no participants skipped more than 3 items on
the scales (scale authors indicated a cutoff of 4 missing responses for the scales to be
unscoreable). Several parents and teachers left items blank in the BASC-2 response
scales resulting in some scales not being scored for those participants due to insufﬁcient
data.

Univariate outlier analyses identiﬁed that one participant in the ADHD group had
signiﬁcantly extreme scores on both the BAI and CESD. The scores were examined to
be legitimate. Due to the large difference in the outlying BAI score from the next highest
score, the score was reduced to be less extreme as described in Tabachnick and F idell
(2007). Even following adjustment of the outlier scores on BAI and CESD, these
variables remained signiﬁcantly positively skewed and kurtotic. Based on analyses of
histograms of normality statistics, a decision was made to use a logarithmic

transformation of the BAI variable to correct for non—norrriality. Following

70

transformation, this variable conformed to univariate normality assumptions. The
outlying CESD score was not extremely different from the next highest 3 scores, thus a
decision was made to keep this score and apply a logarithmic transformation to the
variable to correct for non-normality. Following correction, the CESD variable
conformed to univariate normality assumptions and no outliers were identiﬁed.

The PAI Closeness variable Showed signiﬁcant negative skew (-1.18) and positive
kurtosis (1.32). Following examination of the shape of the distribution, a reﬂected square
root transformation was applied. Positive Affect From Child on the PAI was also
signiﬁcantly positively skewed (-1.49) and showed positive kurtosis (3.50). A reﬂected
square root transformation was applied following examination of the shape of the
distribution of scores. The Substance Abuse / Humor factor showed positive skew (1.24)
and kurtosis (1.90) and, following examination of the shape of the distribution of scores,
was subjected to logarithmic transformation. Following transformations, the PAI
Closeness, PAI Positive Affect from Child, and Substance Abuse / Humor scales all
showed normal distributions.

The Negative Religious Coping variable showed positive skew (2.98) and kurtosis
(13.48) and included an outlier. Deletion of the outlier did not correct for the non-
normality. Logarithmic transformation improved approximation to normality, however
Skew (1.60) and kurtosis (3.22) remained signiﬁcant. With the exception of one
participant who used this coping method a moderate amount, the majority of participants
did not use or only did this a little bit. Thus, due to the non-normality of distribution of
the variable, low variance in responses across groups, and violation of homogeneity of

variance assumption (Levene Statistic = 3.04, p 5 .05), this scale was removed from

71

further analysis. Positive religious coping was negatively skewed (-l.30) and was thus
subjected to a reﬂected square root transformation. Examination of the histogram showed
a high frequency of participants not using this method of coping at all. However, most
scored above the lowest possible rating. Transformation of this variable to normality was
not possible. Due to there being good variance in scores, a decision was made to analyze
between group differences in this variable using nonparametric statistics, however the
variable was not included in regression analyses due to violation of normality

assumptions.

Tests of Research Predictions

Hypothesis 1- Affective and Cognitive / Attitudinal Well-being Comparisons Between
Parent Groups

Table 6 details group means and results of tests for between group differences for
psychological well-being and affective well-being variables. Univariate analysis of
variance (ANOVA) showed signiﬁcant group differences across the three groups in
depression scores, F (2, 88) = 3.74, p g .05, however differences did not remain
Signiﬁcant after controlling for household income in a univariate analysis of covariance
(ANCOVA), F (2, 84) = 1.99, p = .14, partial eta2 = .05. There was a Signiﬁcant
relationship between family income and CESD scores, as indicated by a partial eta2 value
of .08, F (1,84) = 7.32, p g .01. Number of children in the household and age of the child
in question were not included as covariates in analyses as originally planned due to these
variables not differing signiﬁcantly across groups. To analyze between group differences

in frequency of clinical depression, scores on the CESD were dichotomized into

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depressed and not depressed categories based on the widely used cutoff of 16 for this
scale (Radloff, 1977; see Table 7 for characteristics of each group on clinical depression).
The Chi-Square test for independence indicated no Signiﬁcant association between study
group and depression status, x2 (2, n = 91) = 3.10, p = .21, phi = .19. Examination of
differences across parents of children with developmental disabilities versus the typical
control groups using Chi-Square with Yates Continuity Correction also indicated non-
Signiﬁcance, 12(1, n = 91) = l. .46,p = .23, phi = .16.

Univariate ANOVA indicated no Signiﬁcant between group differences in anxiety
(BAI) scores, F (2,88) = 2.31, p = .11. Likewise, controlling for family income in an
ANCOVA analysis indicated no Si gniﬁcant difference between groups on the anxiety
scores, F (2, 84) = .93, p = .40, partial eta squared = .02. There was a small and
Signiﬁcant relationship between Income and BAI scores partial eta2 = .06, F (l, 84) =
4.95, p ;<_ .05. To examine between group differences in clinically elevated anxiety,
parent scores on the BAI were categorized into Low Anxiety (scores below 22) and
Moderate or High Anxiety (scores 22 and above). Chi-Square analysis indicated no
signiﬁcant association between study group and anxiety status, x2 (4, n = 91) = 1.51, p
= .47, phi = .13.

A Multivariate analysis of covariance (MANCOVA) was conducted on the
remaining well-being variables (Happiness, Spiritual Well-being, Composite Well-being)
controlling for family income to examine if there were significant group differences on
any of these variables and to minimize Type 1 error from conducting multiple analyses.
No signiﬁcant group differences were found on any of these scales (see Table 6). Another

question posed in the hypotheses was whether the Ryffe ’s Scales of Psychological Well-

73

being dimension of Positive Relations with Others would Show poorer adjustment for
parents of children with PDD than parents of typically developing children. Univariate
ANOVA indicated no signiﬁcant differences across groups, F (2, 85) = .02, p = .98.
Analyses were repeated comparing both of the DD groups (ADHD and PDD)
combined to the control group of parents with typically developing children. Univariate
ANOVA showed signiﬁcant between group differences in CESD scores, F (l , 89) = 7.53,
p g .01, and group differences remained signiﬁcant even after controlling for income in
an ANCOVA, F (l, 85) = 3.99, p 5 .05. Test of the Signiﬁcance of within family
nestedness by examining the variance components indicated that family nestedness did
not explain a Signiﬁcant portion of variance in depression scores (8% of variance, Wald-
Z = .53, p = .59). Thus, multi-level analyses were not needed. Univariate ANOVA
comparing the two groups on the BAI was signiﬁcant, F (1, 89) = 4.15, p 5 .05), however
this relationship did not remain signiﬁcant after family income was controlled for in an
ANCOVA, F (1, 85) = 1.60, p = .21. MANCOVA analyses did not indicate signiﬁcant
differences across the two groups in Happiness, Psychological Well-being, or Spiritual

Well-being.

Hypothesis 2. Bivariate Associations Between Coping, Resource, and Parent Well-being

Variance components were calculated using HLM and family nestedness was not
related to any of the coping and resource variables, thus indicating that single level
analyses would be appropriate. Pearson correlations between coping, service and support,
and well-being variables are reported in Table 8. Notable was that total number of

services accessed within families showed an expected strong positive correlation with

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Active Positive Coping, however was unrelated to any affective or other well-being
measures. Also, the three parent-child relationship scales from the PAI showed strong
positive inter-correlations with one another and were signiﬁcantly related to depression
and general well-being in the expected direction such that increased quality of the
relationship was associated with better adjustment. As expected, several of the coping
scales were signiﬁcantly associated with the affect and well-being measures. Parent
affect and well-being scales showed signiﬁcant inter-correlations with one another in
expected directions. Income was positively correlated with parent-child closeness and
positive affect felt from the child, though not related to positive affect felt for the child.
Income was also positively associated with overall psychological well-being and
negatively related to avoidant-aggressive coping, substance abuse / humor coping,
depression, and anxiety.
Tests of Coping Strategies as Moderating Child Diagnosis and Parent Well-being

The second hypothesis pertained to whether positive religious coping, planning,
active coping, use of humor, positive reframing, and acceptance on the Brief COPE and
Brief R-COPE buffered the impact of child diagnosis on parental negative affective well-
being. This could only be tested for depression; anxiety Showed no differences across
groups. Religious coping was not included in regression analyses due to non-normality
in distribution of these strategies mentioned earlier. Principal components analysis results
(see Table 4) indicated that all of the remaining coping strategies indicated, with the
exception of humor, loaded onto the Active Positive Coping factor. As previously
discussed, the humor dimension unexpectedly loaded with the Substance Abuse

dimension. Pearson partial correlations controlling for household income were calculated

75

to identify if substance abuse / humor coping and active-positive coping were
signiﬁcantly related to depression. Only active- positive coping (partial r = -.28, p 5 .01)
was Signiﬁcantly correlated with depression. Active-positive coping and the
dichotomous grouping variable (DD or control group) were centered using a z-score
transformation and multiplied to create an interaction term. A hierarchical regression
analysis with household income entered in Step 1, Active-positive coping and the
grouping variable in Step 2, and the interaction term in Step 3 indicated that the
interaction was not signiﬁcant, ,8 = -.04, t = -.39, p = .70.

The next portion of hypothesis 2 asked whether the positive coping dimensions
would predict variance in the positive psychological well-being variables (happiness,
general well-being, spiritual well-being). Results of the correlation analysis (see Table 8)
indicated the active-positive coping factor as being the sole positive coping dimension.
Three separate hierarchical regression analyses were conducted for the affective and
well-being scales (see Table 9). Active—positive coping signiﬁcantly predicted happiness
and the two well-being scales after controlling for household income. Because none of
these positive adjustment measures signiﬁcantly differed across study groups, interaction
effects were not tested.

Relationship Between Beliefs About Developmental Disabilities and Parent Well-
being. The next portion of the hypothesis looked at causal attribution and belief that the
child would be cured among the parents of children with developmental disabilities.
Overall, 41.9% of parents of children with ADHD or PDD believed that their child could
not be cured, 21% stated that they believed their child could be cured, and 37.1% stated

that they did not know if their child could be cured. Chi-square analysis indicated that

76

there were no differences across PDD and ADHD groups in beliefs regarding curability
oftheir child, f (2, n = 62) = 3.41, p = .18, phi = .23.

Parent responses to the questions regarding etiology of the child’s disorder were
coded into 4 categories. Of those who responded, 19% of parents stated they did not
know what caused their child’s disability. 13.8% identiﬁed mercury in vaccines as the
causal factor. 22.4% believed that the disorder was inherited or due to a genetic cause.
44.8% stated other causes, including pre—natal or peri-natal insults, other environmental
toxins, victimization from early neglect, or a combination of genetic and / or mercury
related factors. Chi—square analyses indicated that there were signiﬁcant differences
across PDD and ADHD groups in identiﬁed causes for the child’s disorder, 12 (3, n = 58)
= 8.02, p g .05. Speciﬁcally, more parents of children with PDD identiﬁed a mercury
related cause (n = 7) or Other cause (n = 19) than parents of children with ADHD (n = 1
and n = 7, respectively). These categories were dichotomized into parents who identiﬁed
some sort of cause (positive causal attribution) versus those who indicated that they did
not know the cause.

One-way ANOVA analyses were conducted to test the relationship between
parental beliefs related to a cure for their child’s disability and parent affect and well-
being. Contrary to expectations, no signiﬁcant relationships were found between belief
in a cure and parent affect or well-being variables. One-way ANOVA analyses were
conducted to test the relationship between causal attribution for the child’s disability and
parent affect and well-being.

Relationship Between Service and Support Measures and Parental Well-being.

Another question posed as part of this hypothesis was if number of services accessed,

77

social support, and parent-child relationship dimensions (positive affect toward child,
positive affect from child, closeness) and social support measures would Signiﬁcantly
predict outcomes across each of the affective and well-being measures. Hierarchical
regression analyses controlling for income in Step 1 and entering each of the independent
variables separately to predict happiness, depression, anxiety, general well-being, and
spiritual well—being were conducted (see Table 10). Partial support for hypotheses was
obtained. Total number of services accessed did not Signiﬁcantly predict any aspects of
parent affect or well-being. However, several of the relational variables predicted affect
and well-being. In terms of the parent-child relationship, positive affect toward child
predicted 7% of the variance in depression scores and 6% of general well-being in the
expected direction, but did not signiﬁcantly predict variance in anxiety, spiritual well-
being, or happiness. Positive affect felt from the child predicted 7% of the variance in
parental depression, 10% of general well-being, and 9% of spiritual well-being in the
expected direction of supporting more positive adjustment, but did not signiﬁcantly
predict scores on happiness or anxiety. Overall perceived closeness with their child
predicted 5% of the variance in depression scores, 5% of happiness scores, 10% of
general well-being scores in the expected direction, but did not predict variance in
anxiety or spiritual well-being scores. Broader social support predicted 6% of the
variance in general well-being scores in the expected direction, however failed to predict
any other parent outcome scores.

To further analyze the role of the various coping and resource variables in
predicting parental well-being, post-hoe analyses were conducted. To minimize problems

of multicollinearity, total services accessed was not included in regression analysis due to

78

it’s high signiﬁcant correlation with active-positive coping (r = .40, p _<_ .01). Similarly,
only the positive affect felt from child scale on the PAI was included due to high inter-
correlations between the overall closeness, positive affect toward child, and positive
affect felt from child scales (see Table 8). Of the three scales, positive affect felt from
child was selected because it had the most consistent relationships to parent well-being of
the three PAI scales.

Hierarchical regression analysis controlling for household income in Step 1 and
simultaneously entering active positive coping, avoidant- aggressive coping, substance
abuse / humor coping, Positive Affect from Child, and Social Support in Step 2 explained
26.2% of the variance in depression, F (6, 75) = 5.80, p 5 .01. Removal of the non-
signiﬁcant predictors one at a time, with removal of the smallest individual beta
coefﬁcients ﬁrst, resulted in incremental removal of social support, substance abuse /
humor, and positive affect from child. The remaining model with active positive coping
and avoidant-aggressive coping and controlling for household income accounted for 22%
of the variance in parental depression, F (3, 79) = 8.72, p _<_ .01 , with direction of
associations being in the expected directions. Active-positive coping was negatively
associated with depression and avoidant—aggressive coping was positively associated with
depression. See Table 11 for regression coefﬁcients. Notable is that in the model with
active-positive coping, avoidant-aggressive coping, and positive affect from child and
controlling for household income, the unique contribution of positive affect from child to
the variance in depression scores approached signiﬁcance (B = .18, t = 1.79, p = .08),
with the overall model explaining 24.1% of the variance in depression scores (F (4, 78) =

7.52, p _<_ .01).

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Prediction of the composite psychological well-being score was also tested. With
the three coping variables, and positive affect from child in the model and controlling for
household income, 37.1% of the variance in well-being was accounted for (F (6, 73) =
8.78, p 5 .01). Incremental removal of predictors that did not provide signiﬁcant unique
prediction of the dependent variable resulted in removal of substance abuse / humor and
then active-positive coping. The resulting model (see Table 12) contributed 35% in the
prediction of variance in composite psychological well-being (F (4, 76) = 11.77, p 5 .01).
Direction of association was as expected such that avoidant-aggressive coping was
negatively associated with well-being and social support and positive affect from child

were positively associated with well-being.

Hypothesis 3 - Comparing Coping and Resource Effectiveness Across Groups

Principal components analysis results for the Brief-C OPE scales did not support a
distinction between emotion-focused versus problem-focused types of coping that were
part of this hypothesis. Thus, testing of whether reliance on emotional versus problem
focused coping strategies differed across PDD and ADHD parent groups could not be
conducted. Partial correlations were conducted for each of the coping components with
each of the well-being scales, controlling for household income. Although several
Si gniﬁcant relationships emerged in the PDD parent group, only one relationship
(avoidant-aggressive coping and anxiety r = .47, p _<_ .05) was signiﬁcant for the control
group of parents. No signiﬁcant correlations emerged for the ADHD group. Comparison
of unique effectiveness of coping strategies in each of the study groups thus could not be

performed.

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Hypothesis 4- Relationship Between Child Context and Parent Well-being

Child Behavioral and Emotional Characteristics. Parent and teacher ratings of the
children’s social skills, externalizing behaviors, and ﬁrnctional communication were
signiﬁcantly correlated (See Table 13). However, parent ratings of internalizing
behaviors were not signiﬁcantly correlated with teacher ratings. Thus scores for social
Skills, externalizing behaviors, and functional communication were averaged across
parent and teacher raters when available. Intemalizing scores were averaged across
, maternal and paternal reports when available, leaving out teacher reports due non-
signiﬁcant correlations with parental ratings and research evidence indicating that
teachers are less accurate raters than parents of children’s’ internalizing behavior
problems (Hinshaw, .Han, Erhardt, & Huber, 1992; Thompson, Dubowitz, English,
Nooner, Wike, Bangdiwala, Runyan, & Briggs, 2006).

See Table 14 for a summary of behavioral and emotional characteristics by study
group. Scores are reported in T score format such that for clinical scales (externalizing
behaviors, internalizing behaviors, attention problems) above 65 represent clinically
severe problems and for adaptive scales (Social Skills, Functional Communication)
scores below 40 represent underdeveloped skills relative to other children of the same age.

As expected, on average the children in the PDD group had clinically delayed
functional communication skills (M = 28.57, SD = 9.15) and social skills (M = 34.38, SD
= 7.84). On average, children in the ADHD group had clinically signiﬁcant levels of
externalizing behavior problems (M = 65.15, SD = 13.74) and borderline delayed social

skills (M = 40.12, SD =10.17). On average, children of parents in the control group did

81

not have clinically signiﬁcant behavioral, social, or communication problems. One-way
ANOVAS indicated signiﬁcant between group differences on the Functional
Communication, Social Skills, Attention Problems, Intemalizing Problems, and
Extemalizing Problems scales on the BASC-2 (see Table 14). These differences
maintained signiﬁcance even when income was controlled for and all scales were entered
into a MANCOVA to minimize Type 1 error. Post—hoe analyses indicated that children
in the ADHD group had more externalizing problems than the PDD and Control groups
and children in the PDD group had more externalizing problems than the Control group.
Children in the ADHD group had more internalizing problems than the PDD and Control
groups and children in the PDD group were not signiﬁcantly different from controls on
this dimension. AS expected, social skills and functional communication skills were the
most impaired in the PDD group. Further, children in the ADHD group were more
impaired than children in the typically developing group on these dimensions.
Relationship Between Child Characteristics and Parent Psychological Well-being.
Table 15 details Pearson correlations for child context (BASC-2 scales) and parental
affect and well-being measures. Happiness and spiritual well-being were not
Significantly related to any of the child context scores. All remaining parent affect and
well-being scores were signiﬁcantly correlated with all of the child context scores in
expected directions. Tests of moderation were conducted using hierarchical linear
modeling (HLM) regression analysis to control for within family correlations in BASC-2
mean scores. The signiﬁcant main effect for the grouping variable (DD versus control)
onto depression while controlling for family income was previously established (see

Hypothesis 1). Due to SPSS not being able to output standardized parameter estimates in

82

HLM, all variables were centered prior to analyses so that output results would be
standardized. Tests of Signiﬁcance of the various BASC-2 problem and adaptive scales
were conducted in separate HLM regressions onto depression controlling for household
income (see Table 16). All BASC-2 scales except internalizing problems Signiﬁcantly
predicted parental depression after controlling for within family correlations and
household income. Next, interaction terms were calculated between each of the BASC-2
scales and the dichotomized group variable. Hierarchical linear modeling was used to
test the signiﬁcance of the interaction between study group and child context measures by
entering the main effects, household income, and the interaction between the
dichotomized group variable with each of the BASC-2 scales (see Table 16 for results).
The hypothesis was not supported such that none of the interactions were signiﬁcant, thus
indicating that the inﬂuence of diagnostic grouping on depression does not signiﬁcantly
differ across levels of any of the child context variables.

Post-hoe analyses were conducted using HLM regression analyses to further
evaluate if the coping and resource variables may buffer the impact of child stressors on
parent well-being. Partial Pearson correlations controlling for household income were
calculated between the child stressor variables and parent well-being. None of the
speciﬁc child context variables on the BASC-2 were associated with parental happiness,
general well-being, or spiritual well-being. The problem scales of the BASC-2 were
signiﬁcantly related to depression and anxiety (see Table 17). Of these, externalizing
problems and internalizing problems were selected due to their stronger correlations with
depression and anxiety and in order to reduce number of analyses and risk for type I error.

Following, partial correlations were calculated between the coping and resource variables

83

and parental depression and anxiety. Of the coping and resource variables, only active
positive coping (partial r = -.27, p 5 .05), avoidant—aggressive coping (partial r = .32, p

g .01), and positive affect from child (partial r = .27, p 5 .01) were Signiﬁcantly
correlated with depression. The only Signiﬁcant association between resource and coping
variables with anxiety were for avoidant-aggressive coping (partial r = .30, p :_<_ .01) and
substance abuse / humor coping (partial r = .21, p 5 .05). Partial correlations between
these coping methods and internalizing problems were not signiﬁcant.

Thus, to further reduce number of analyses, only moderators of the relationship
between child internalizing and externalizing problems and depression were calculated.
Regression was conducted using HLM to control for inter-family correlations and
household income to test moderation effects between these variables. Results are
detailed in Table 18. The only Signiﬁcant moderating relationship was active positive
coping on the relationship between child internalizing problems and parent depression.
Graphing of the interaction indicates that with increased reliance on active positive
coping methods, the association between child internalizing problems and depression is
attenuated.

Hierarchical linear modeling regression was conducted to control for inter-family
correlations and household income to test moderation of the relationships between child
problems and parental anxiety. Results are detailed in Table 19. The only signiﬁcant
moderating relationship was substance abuse / humor on the relationship between
internalizing problems and parent anxiety such that higher levels of substance abuse /
humor are related to decreased magnitude in the relationship between anxiety and child

internalizing problems.

84

Parent Use of Coping and Support Variables. Table 20 details between group
comparisons for each of the coping variables. Several participants submitted incomplete
Brief COPE and Brief RCOPE questionnaires. Thus, analyses for the various coping
dimensions include different sample sizes. Aside from the active-positive coping
variable, where parents in the PPD group were more likely to use this strategy than
parents of typically developing children (t (63) = 3.37, p g .01), no signiﬁcant differences
were identiﬁed across groups in coping methods.

Table 21 details support and resource characteristics across study groups and
results of tests for between group differences. Univariate ANOVAS were conducted to
evaluate if there were signiﬁcant differences across groups in the various coping and
support variables. No between group differences were found for social support, F (2, 86)
= 1.13, p = 33. Positive affect toward child and positive affect from child both Showed
differences across groups (F (2, 88) = 10.34, p 5 .01 and F (2, 88) = 6.55, p _<_ .01,
respectively). Post-hoe analyses indicated that for both variables there were no
differences between the PDD and ADHD groups, but each of the clinical groups were
signiﬁcantly different from the control group in the expected directions such that parents
of children with developmental disabilities shared less positive affect with their child than
parents of typically developing children. No group differences were found in overall
closeness (F (2, 88) = .82, p = .44). There were signiﬁcant differences across groups in
number of services accessed F (2, 88) = 20.09, p 5 .01. Post-hoe analyses showed that
the PDD group accessed the most services, followed by the ADHD group. Analysis of
who received these services indicated that only child directed services attained signiﬁcant

differences across groups, F (2, 88) = 32.58, p 5 .01. Post-hoc analyses indicated again

85

that parents in the PDD group accessed the most services, followed by the ADHD group

for child-directed services.

Hypothesis 5- Role ofParent-Child Relationship in Predicting Well-being Among
Parents of Children with PDD. Analyses in Hypothesis 2 established a positive
association between several of the parent-child relational scales on the PAI with parental
well-being (see Table 10). Of the PAI scales, positive affect from child showed the
strongest and most consistent prediction of affective and well-being scales in the overall
study sample and was thus selected for analysis of potential interaction effects with child
characteristics in predicting affect and well-being among parents of children with PDD.
Model statistics indicated that 11.4% of the variance in spiritual well-being was
explained by positive affect from child and household income and 20.3% of the variance
in general well-being was explained by positive affect from child and household income.
Prediction of happiness approached Signiﬁcance, ,6 = -.20, t= -1.86, p = .07. Recall that
the positive affect from child scale was reverse square root transformed to correct non-
normality in distribution of scores. Thus, these relationships are in the expected direction
of positive affect from child serving as a potential promoter of positive well-being among
parents of children with PDD.

Next, to analyze if positive affect from child could buffer the inﬂuence of child
stressors on parent well-being, main effects for the child characteristics (externalizing
problems, internalizing problems, attention problems, social skills, functional
communication, perceived 1Q) were regressed onto general well-being and spiritual well-

being in 12 separate hierarchical regression analyses controlling for household income in

86

step 1. The only signiﬁcant child context predictor of spiritual well-being was attention
problems (,6 = -.39, t = -3.20, p _<_.01), with the overall model explaining 49.9% of the
variance in spiritual well-being, F (2, 33) = 16.44, p g .01. Social Skills contributed
unique prediction of variance in general well-being, B = .33, t = 2.19, p 5 .05, with the
overall model including household income predicting 29.7% of the variance in the
dependent variable, F (2, 32) = 6.75, p 5 .01. Functional communication contributed
unique prediction in general well-being, [3 = .34, I: 2.25, p 5 .05, with the overall model
including household income explaining 27.4% of the variance, F (2, 31) = 5.86, p _<_ .01.
Attention Problems contributed unique prediction of general well-being (,6 = -.40, t= -
2.79, p 3.01), with the overall model including household income explaining 34.9% of
the variance in general well-being, F (2, 32) = 8.59, p 1.01. Tests of models where
Attention Problems, Social Skills, and Functional Communication were entered
simultaneously into Step 2 after controlling for income in Step 1 indicated that only
Attention Problems contributed Signiﬁcant unique prediction of general well-being.

The various Signiﬁcant main effects were centered using z-score transformations
and interaction terms between positive affect from child with attention problems,
functional communication, and social Skills each were calculated. Hierarchical
regressions were used to test these interactions after controlling for income and main
effects. None of the four hierarchical regression tests showed signiﬁcant interactions.
Thus, there was no support for quality of the parent-child relationship buffering the
impact of child disability characteristics among parents of children with PDD on their

affective or psychological well-being.

87'

Discussion
Psychological Well-being among Parents Groups

Risk for Psychopathology. A primary focus of this study was to replicate ﬁndings
that parents of children with developmental delays (DD) are at risk for psychological
distress relative to other parents and, further, to examine factors that account for this risk.
As a group, parents of children with either ADHD or PDD were more likely to endorse
depressive symptoms than parents of typically developing children. The expected
ﬁndings of risk among parents of children with DD for anxiety were not found. Although
not completely replicating prior research ﬁndings, this study does support the hypothesis
that parents increased distress due to having a child with a DD.

Rates of clinically signiﬁcant depression (21.1% for PDD group, 30.8% for
ADHD group) and anxiety (5.3% for PDD group, 11.5% for ADHD group) in this sample
were lower than has been identiﬁed in other studies. In particular, the Bitsika and
Sharpley (2004) study in Australia identiﬁed staggeringly high rates of pathology among
parents of children with autism (39% - 67% reporting High to Severe anxiety and
depression). There could be several explanations for the divergence of ﬁndings here. For
one, the Australian sample may have had access to very different supports and resources
than has been available to the parents in Michigan represented in this sample.
Additionally, the Bitsika and Sharpley (2004) study was published 4 years ago. Over the
past few years, there has been an explosion of autism research and increased public
awareness about autism. Additionally, although still lagging behind the demand, there
are more evidence based services available now to families and these children than in the

past. Parents may feel less alone and more like they have treatment options today than in

88

the past. This may explain why the results from this study also failed to replicate prior
studies in ﬁnding that parents of children with PDD were more socially isolated. On
average, regardless of perceived effectiveness, the parents of children with PDD accessed
7 separate treatment services. All of the children with PDD in the current study received
some form of treatment. In comparison, 76.5% of the parents completing Bitsika and
Sharpley’s (2004) study responded that they had accessed services directed to support
them. Although the questions asked here of parents were Slightly different, it is possible
that the sample in the present study received more services on average than parents
participating in prior research.

Previous research comparing parents of children with PDD to children with mixed
psychiatric problems suggested that parents of children with PDD could be at increased
risk for depression and anxiety relative to parents of children with ADHD. This has been
the ﬁrst study to explicitly compare these two groups of parents. There were no
Signiﬁcant differences between parents of children with PDD versus ADHD in the self-
reported depression or anxiety levels. Examination of child related stressors sheds some
light on why parent differences between these two groups did not emerge. As expected,
children with PDD were the most delayed in social and communication skills. However,
children with ADHD had, on average, more externalizing and internalizing problems and
attention problems than the children with PDD. Each of these speciﬁc aspects of the
child context predicted anxiety and depression symptoms. Thus, it could be that whereas
children with PDD and ADHD have different proﬁles of challenges, these challenges
result in Similar overall stressor load on parents and, consequently, similar well-being

proﬁles.

89

Another explanation for the decreased risk for depression and anxiety relative to
other studies may be the speciﬁc sample recruited for this study. As a whole, the sample
was well educated and household income was high. Although income was statistically
controlled for in analyses, it is possible that there is simply a decreased base-rate in
depression and anxiety among all parents with high educational and income
achievements resulting in the relatively small sample size in this study simply not
capturing these parents. Household income in this study was associated with decreased
externalizing, communication, and attention problems in children (lrl = .28 - .33, p g .01),
as well as decreased affective problems and increased general well-being and happiness
among parents (|r| = .22 - .35, p g .01). Covarying income in analyses resulted in much
of the variance in affective and cognitive / attitudinal well-being being taken by income
and problems with multicolinearity in regression analyses, which may have contributed to
Type 11 error.

Positive Adaptation. This study departed from a tradition in the literature to look
solely at negative adjustment among parents of children with DD. Assuming only a
tragic impact of having a child with a disability on parents is unrealistic and limits the
ability of research to help more parents achieve and maintain positive health. Results of
this study indicated that parents, regardless of if their child had ADHD or PDD,
experienced happiness, general well-being, and spiritual well-being at similarly high
levels. This was contrary to qualitative research ﬁndings indicating that having a child
with PDD resulted in transformative changes in parents’ outlook on life (Scorgie &

Sobsey, 2000). Other empirical research has either found the same ﬁnding here (Seltzer,

90

Greenberg, & Floyd, 2004) or that parents of children with PDD experienced decreased
well-being relative to other parents (Nachshen & Minnes, 2005; Sivberg, 2002).

This research attempted to address a problem in prior empirical research by
measuring aspects of well-being parents of children with DD described as having been
transformed as a result of having a child with special needs in their lives. Measures for
personal growth, relations with others, environmental mastery, and spiritual well-being -
were planﬁrlly included in this research. No signiﬁcant differences in these aspects of
well-being were found across groups. The discordance between what parents are saying
and what empirical research has been ﬁnding may be due to inappropriate
operationalizing of well-being used in the empirical research. Perhaps researchers are
still not asking the right questions. Also possible is that the bonadaptation that parents
describe in narrative accounts come from an ability to positively reframe life stressors
rather than a true transformative improvement in their well-being. In fact, parents of
children with PDD were found to rely more on positive and active coping methods than
parents of typically developing children. Another possibility for this lack of between
group differences in happiness and cognitive and attitudinal aspects of well-being is that
perhaps only a small portion of parents rise above the challenges of parenting a child with
a developmental delay to experience bonadaptation. If this is indeed the case, it would be
important to identify these parents, conduct careﬁrl qualitative research on their
experiences and coping, and construct measures to capture the positive well-being they
describe. Additionally, it is difﬁcult to identify true transformative effects of having a

child with PDD without conducting a longitudinal study.

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Parents of children with ADHD and PDD were just as happy, just as healthy
spiritually, and just as positive in their general attitudes and thinking about their lives as
parents of typically developing children. Perhaps one source for the resiliency in parents
of children with DD despite signiﬁcant child stressors is the increased use of active
positive coping methods relative to parents of typically developing children. Support for
this idea was found in the signiﬁcant moderating effect, described in more detail in a later
section of this discussion, of active positive coping on the relationship between child

internalizing problems and parental depression across the entire sample.

Relationship Between Child Characteristics and Parental Well-being

Another aspect of the theoretical model was that child diagnosis would be related
to parent well-being. As expected, child externalizing problems, attention problems,
internalizing problems, social delays, and communication delays were related to
increased anxiety and depressive symptoms among parents. Although not remaining
Signiﬁcant after controlling for income, these behavioral and emotional problems were
associated with decreased general well-being. Child behavioral characteristics
overlapped in children with ADHD and PDD. Speciﬁcally, although in different degrees,
children with ADHD and PDD often shared deﬁcits in social competence, behavioral,
and attentional problems. The considerable overlap suggests nosological issues.
Children with PDD often have comorbid ADHD. There is also considerable variability in
presentation of children with PDD such that the children in this study presented with a
broad range of intellectual and behavioral characteristics. Additionally, children with

ADHD often present with social difﬁculties although these appear to be secondary to

92

poor attention to social cues and difﬁculty with behavioral inhibition rather than a
fundamental deﬁcit in social cognition as is the case with children with PDD. Many of
the children with PDD in this study were also diagnosed with ADHD and had attentional
difﬁculties and externalizing behavior problems. Thus, parents of children with PDD
versus ADHD only experience shared stressors which may contribute to the failure to
ﬁnd differences in well-being among the two clinical groups. Rather than focusing on
diagnostic group differences to discern parental experiences of stressors, it may be more

relevant to focus on the speciﬁc child-related stressors.

Association between Coping, Resources, and Parent Psychological Well-being
Regression analyses including the various parent health and coping and resource
factors supported that a signiﬁcant portion of variance in parent health was explained by
coping and resource factors. Additionally, predictors of parent psychopathology differed
from predictors of positive adjustment. Avoidant-aggressive coping, social support, felt
closeness, and household income predicted 35% of the variance in general psychological
well-being. Prediction of depression, however, was only associated with income, active-
positive COping, and avoidant-aggressive coping, with the overall model accounting for
22% of the variance in depression scores. This ﬁnding supports the importance of
separately measuring positive affect and well-being from negative affect. Due to the
small sample Sizes in each of the parent groups relative to number of analyses being
performed, unique coping styles and differential effectiveness of coping and resources
among parents of children with PDD versus other parents could not be examined. This

question remains important because there are aspects of parenting a child with PDD.

93

Thus these parents may require Speciﬁc types of support to combat these unique stressors

and to promote positive well-being.

Parental Coping Strategies for Child-related Stressors. This research was the ﬁrst
to examine parental coping with the speciﬁc stressors that parenting their child introduces
to their lives. Prior research has assumed that parents cope with parenting demands in the
same manner that they cope with other daily life demands. However, it was argued here
that parenting a child with developmental delays introduces unique challenges that may
elicit a separate set of coping behaviors from parents. Also proposed was to examine
speciﬁc coping behaviors rather than broad coping styles. However, given the large
number of analyses already needed to examine moderation effects on a large number of
psychological well-being variables, decision was made to reduce the number of analyses
to enable appropriate focus on whether coping in general had an impact on well-being.
Thus, factor analyses were conducted on the 10 coping dimensions of the Brief COPE
into 3 broad styles of coping: active positive, avoidant aggressive, and substance abuse /
humor coping. As has been found in the coping literature, active positive coping
strategies for child related stressors were associated with fewer depressive symptoms,
increased happiness, increased general well-being, and increased Spiritual well-being
after controlling for family demographic characteristics. Avoidant and aggressive coping
strategies were related to increased depression and anxiety symptoms and decreased
happiness and general well-being. Reliance on substance use and humor was not
associated with positive or negative parental adjustment after controlling for household

income. This may have been due to only a small minority of parents in this sample

94

endorsing using substances to cope with child related stressors as well as possible
misinterpretation of the questionnaire items tapping humor.

The ﬁnding that humor loaded with substance abuse and was negatively related to
positive adjustment was unexpected. Examination of the humor items on the Brief COPE
in context of the altered instructions in this study to respond to the questionnaire based on
speciﬁc coping with child-related stressors suggested parents may have interpreted these
items as making fun of and laughing at their child. Humor has been identiﬁed in research
(Roussi et al., 2007) as being an adaptive method to cope with life stressors. Perhaps in
context of coping with child-related stressors humor may be representative of an
unhealthy defense mechanism that distances parents from problems in a way that
exacerbates the impact of stressors. Also possible is that use of humor to cope with
child-related stressors presented by children with ADHD and PDD is representative of a
failure to appropriately empathize with the child’s struggles and inability to modulate
ones own stress to maintain appropriate parent-child boundaries.

Of the three groups of parents, parents of children with PDD were found to rely
most heavily on active positive methods of coping when dealing with stressors related to
their child. It appears that having a child with a developmental delay forces parents to be
more active and positive in their coping and that when their child has PDD they are
mobilized further in this regard. Presumably, parents of children with DD developed an
increased reliance on these methods as a consequence to experiences with their child.
Both PDD and ADHD involve lifelong impairments for which there continues to be no
cure. Parents of these children are oﬁen at odds with schools and their communities to

get appropriate educational services and acceptance for their children. In the case of

95

PDDS, the impairment is often more pervasive and profound and the treatment is more
complex and limited in it’s effectiveness in addressing core symptoms of the disorder.
Parents of children with PDD are faced with a sea of treatment options, many of which
are costly and lack empirical validation. Access to professionals with expertise in this
area is difﬁcult and when there is access, professionals offer them limited answers for
what could work. Faced with a circumstance of a child with problems and limited
available treatment, parents of children with PDD may feel especially pressed to be
actively involved in their child’s care, reframe setbacks, plan carefully ahead when
interacting with their child.

The study also examined whether a deﬁnitive idea about the source of the child’s
disability would be associated with better parental adjustment. Parents of children with
ADHD and PDD are constantly asking why their child developed these conditions.
Regardless of motivations, it was expected that having an idea about what caused their
child’s disability would be related to better adjustment by way of giving parents a sense
of control over their lives. This relationship was not supported as no associations with
well-being were found with causal attribution or belief in a cure as possible for their child.
There was a trend toward parents who had a positive causal attribution about the etiology
of their child’s disorder being happier. Failure to ﬁnd a signiﬁcant effect may be due to
the crude measurement of causal attribution used here as well as due to the sample size
being too small to detect effects. However, the trend suggests that this aspect of parent
adjustment might be explored ﬁrrther in future research using larger sample sizes and
more speciﬁc measurement strategies. The trend also supports importance of explaining

to parents upon diagnosing children what may have caused the child’s disorder, even if a

96

clear causal relationship cannot be identiﬁed. In fact, parent responses in this study
identiﬁed a variety of etiological sources to ADHD and PDD with mixed scientiﬁc
support.

The positive and negative religious coping scales failed to adhere to statistical
assumptions of normality and equality of variance across groups required for parametric
statistics. Thus, the scales were not examined for their relationship to parental well-being
and affect. Several of the participants also crossed out portions of the text in the scale
and replaced them with “God,” indicating that these participants had difﬁculty relating to
the wording of the scales. Although the original intent when re-wording the scale was to
make it more inclusive of non-monotheistic faiths, the high prevalence of Christian
religious identiﬁcations in the current sample may have resulted in the re-wording of the
scale alienating some participants in the sample. What was evident, however, in the large
font and exclamation marks of participants who had diligently crossed out “my religion,”
“my God,” and “or a higher power” and emphatically inserted the word “God” in their
place was that religion is an extremely important part of people’s lives that Should
continue to be explored in research.

External Resources and Supports for Parents. Another source of resilience for
both the PDD and ADHD parents groups could be the relatively more frequent use of
formal treatment services for the child and the family compared to parents of typically
developing children. There was a signiﬁcant negative association between total services
and parental depression and positive association with general well-being. However,
when income was controlled in regression analyses, number of services did not predict

any of the parent well-being measures. Income was signiﬁcantly associated with several

97

of the parent well-being measures as well as number of services accessed. Additionally,
income was confounded with group membership such that the control group had a
Signiﬁcantly higher family income than the ADHD group. Thus, a deﬁnitive conclusion
regarding whether or not interventions for children with DD and their families support
parent well-being cannot be made. Future research using larger samples sizes where
socio-economic status is more equally represented across study groups Should examine
this important role of interventions for parent health and, speciﬁcally, if services are
helpful to parents of children with DD.

This study was the ﬁrst to examine the importance of the parent-child relationship
among parents of children with developmental disabilities in determining parent health.
Most parents in the study identiﬁed as feeling very close to their child. Positive affect
felt from the child and toward the child as well as perceived closeness with the child were
associated with decreased depression symptomatology, increased happiness, and
increased general and spiritual well-being. Thus, as expected, the parent-child
relationship is a particularly important aspect of support for. parents. General social
support, however, was Si gniﬁcantly associated with general well-being only, suggesting
that the parent-child relationship inﬂuences more aspects of parent well-being than
general social support.

Parents of children with PDD and ADHD did not differ from one another in the
affection shared with their child; however as a group they shared less affection than
parents of typically developing children with their child. When looking at just parents of

children with PDD, parent-child relationship continued to predict general well-being and

98

spiritual well-being after controlling for household income. Prediction of happiness in

the PDD sample approached signiﬁcance.

Moderators of Parental Adjustment

Moderation effects of the various coping and resource variables could only be
tested for parent depression due to this being the only aspect of well-being that differed
across groups (DD versus control group). None of the coping and resource variables
were found to buffer the impact of child diagnosis on parental depression. Moderators of
the relationship between child diagnosis and positive aspects of well—being could not be
tested due to there not being any group differences in positive well-being. As previously
discussed, it is possible that child diagnosis itself was not the primary child-context
variable to predict parent well-being as originally hypothesized. Thus, post-hoe analyses
were conducted to examine if the coping and resource factors would moderate the
relationship between the speciﬁc child-related stressors and parent well-being. For the
prediction of parental depression, active positive coping strategies moderated the
relationship between child internalizing problems and parental depression, such that the
association decreased with increased use of active positive coping strategies. Although
this ﬁnding Should be interpreted with caution due to the large number of analyses in this
study risking Type I error, the ﬁnding suggests that taking action to address child related
stressors, planning, and positive reframing methods reduces parental depression
symptomatology when their child has internalizing emotional problems.

Increased reliance on substance abuse / humor coping was associated with

decreased strength in the relationship between parental anxiety and child intemalizing

99

problems. This was contrary to expectation as it was expected that use of substance abuse
/ humor coping would exacerbate the risk posed by child internalizing behaviors for
parental anxiety. The substance abuse / humor factor was a combination of theoretically
divergent methods of coping. In fact, substance abuse is considered a maladaptive
coping strategy whereas humor has been identiﬁed in previous literature as being
protective. As previously discussed, parents may have interpreted the humor coping
questions in a way such that use of this strategy represented minimizing of the child’s
problems and being unempathic and emotionally unavailable to their child.

Examination of the quality of shared positive affections between parent and child
as a moderator of the relationship between child stressors and parent well-being indicated
that there was no Si gniﬁcant moderation effect across the entire sample. Moderation
analyses for just the ADHD and PDD parent groups were not completed due to lack of
power in detecting signiﬁcant moderator effects with the sample size obtained. Future
studies with a larger sample size Should investigate if quality of the parent-child
relationship does indeed buffer the impact of child related stressors among clinical groups
on parental well-being.

Although this study only found that two of the coping and resource variables
signiﬁcantly moderated the effect of one of the child related stressors on parent
psychopathology, this Should not be taken that these coping and resource variables are
unrelated to parent well-being. Despite not ﬁnding more of the expected moderation
effects, there were signiﬁcant associations between the coping and resources and parent
well-being as expected. Additionally, there was also support for child-related stressors

predicting parent well-being. Lack of ﬁnding signiﬁcant moderator effects may have

100

been due to coping and resources not having speciﬁc effects on child related stressors as
was modeled in this empirical study. As was discussed in the literature review, the
inconsistencies in research on moderators'of well-being may also be due to measurement
issues where the instruments used may not have reﬂected the constructs that they aimed
to measure. Measures speciﬁcally tapping the constructs that were identiﬁed in the
narrative and empirical research as relevant to the questions posed for this study were
carefully selected. However due to the number of analyses planned, some of the
variables were subjected to principal components analysis to reduce number of analyses
and the risk for Type 11 error. AS previously mentioned, the substance abuse and humor
factor of coping was not anticipated to emerge in the principal components analysis and
falling together due to these constructs being theoretically divergent. Due to this
measurement issue, it remains unclear if substance abuse or humor can independently

moderate the relationship between child stressors and parent well-being.

Study Weaknesses and Recommendations for Future Research

Although planning for this research involved considerations of critiques of the
existing literature and research design involved many adjustments to remedy the
limitations that have existed, there were a number of anticipated and unanticipated
limitations that emerged in this study. Some of these limitations came about through the
original proposal to be more Speciﬁc and thorough in measurement, which resulted in an
unmanageable number of analyses being proposed and risking statistical problems with
Type I error. Following, variables were reduced to a more feasible balance of sample

size, number of analyses, and number of variables in an effort to limit Type I error. Thus,

101

despite efforts to be more Speciﬁc, this research only partially accomplished this feat.
Additionally, there were a number of sampling, measurement, and methodological issues
that should be addressed in future research.

Sampling. Prospective power analysis indicated that the sample size was more
than sufﬁcient to detect large effects that had been found in prior studies on parental
depression and anxiety among parents of children with DD. Failure to replicate group
differences in parent psychopathology and general well-being in prior research may be
due to the effect size of group differences among the Michigan population of parents
being smaller than estimates based on previous research in other geographic areas
suggested. Parents of children with DD in Michigan may be better off than parents
sampled on other research. Alternatively, the sample Size may have been appropriate but
sampling biases may have inﬂuenced results. Parents struggling may not have been
adequately captured in the recruitment process. Despite efforts to recruit a
socioeconomically representative sample through using school recruitment methods, the
sample recruited was generally well educated with high annual income and was thus not
demographically representative of the Michigan population. As previously mentioned,
there may be a lower rate of psychopathology among parents at higher socioeconomic
levels. Due to the low base-rate of PDD and ADHD in the general child population, it
was difﬁcult to locate a large number of parents of children with these clinical diagnoses.
The parents who did participate may have been psychologically healthier, thereby having
more internal resources to complete demands necessary for participation in a research
study. Although income was controlled for in analyses, there were Signiﬁcant group

differences in income such that the control group had signiﬁcantly greater income than

102

the other two groups, thereby introducing a signiﬁcant problem with multicollinearity
that limited the ability to detect between group differences.

Efforts were made to incentivize parents to participate once located by discussing
the potential beneﬁts of the study to families of children with DD and offering parents
lottery entries to win substantial prizes. More parents expressed interest and were thus
mailed research packets for the study than returned questionnaires. Phone follow-up with
parents indicated that most parents who did not return the questionnaires still intended to
complete the questionnaires, but had difﬁculty ﬁnding the 1.5 hours of time needed.
Obtaining complete data from parents of children with ADHD was most difﬁcult and
phone follow—ups were conducted in attempt to obtain responses to questions skipped.
Additionally, part way through data collection the incentive for this group was changed to
a ﬁnancial incentive of $15 for participation. The comparison group of parents was
surprisingly the most difﬁcult to recruit, presumably due to decreased motivation to
participate in a study where the population of focus did not directly apply to them. Many
of the parents in the control group were in helping or scholarly professions (e.g., teachers
/ professors, special education aides). The ﬁnal sample obtained was a result of strenuous
data collection efforts over a period of 1.5 years. A more representative sample of
parents might be obtained in future research through increasing participation incentives
and recruiting from more general community venues. Additionally, in-person data
collection would likely increase participant engagement, increase standardization and
researcher control in data collection, and improve study completion rates.

Another limitation of this Study was that diagnostic conﬁrmation and intellectual

testing results were achieved for only a small portion of the children reported for in this

103

study. Correlation analysis supported using parental perceptions of their child’s
intellectual level for this study, but this method is neither psychometrically valid nor
reliable. Future research should obtain conﬁrmations of intellectual testing and
diagnostic testing results. Both ADHD and PDD are currently popular diagnoses in
medical clinics and in schools, thereby running the risk for over diagnosis or mis-
diagnosis of problems. Further, parents may have difficulty understanding clinician and
school assessment ﬁndings of “features of” a clinical diagnosis versus when actual
diagnosis has been made. Parent reported diagnoses in this study may thus represent
over-reporting of PDD and ADHD, thus contributing to failure to ﬁnd Signiﬁcant
between group differences in affective and cognitive / attitudinal well-being among
parents in these groups versus controls.

Measurement. As previously discussed, coping and well-being variables had
intentionally been chosen to identify Speciﬁc coping behaviors and aspects of well-being
relative to parents. However, the large number of variables that resulted made analysis
unmanageable and thus in the interest of the primary focus of this study to identify if
coping and resource factors moderate aspects of well-being, principal components
analysis was used to reduce the number of variables involved in analysis. Thus, it is
unclear what aspects of the active positive coping factor (positive reframe, active
problem solving, or planning ahead), if not all aspects, were the active agents in
predicting positive adaptation. Similarly, it remains unclear if use of humor in managing
parenting demands could be adaptive due to these items being clustered with substance
abuse items. Additionally, as previously discussed, the wording of the humor items may

have been interpreted by parents as laughing at or minimizing their child’s difﬁculties.

104

Future research might focus on Speciﬁc coping strategies to identify which aspects of the
factors examined in this study inﬂuence parental well-being. A larger sample size would
also allow for more speciﬁc aspects of coping and well-being than was within the scope
of possibility for this study due to the large number of planned analyses. Larger sample
Sizes across groups would permit the examination of unique coping styles and the
differential effectiveness of coping and resource supports of parents of children with
PDD. Pilot research on use of humor coping strategies for child speciﬁc stressors should
be conducted to validate the measure for parents of children with DD to ensure that the
questions are more clearly and unifome interpreted by respondents.

Another limitation was that parental coping and well-being ratings were all self-
report questionnaire ratings. Although the measures in this study, with the exception of
the Professional Services and Supports Questionnaire developed for this study, were
determined to be valid measures of constructs in previous studies, self-report measures
rely heavily on the respondent’s ability to be insightful regarding their own functioning.
Further, the questions were generally quite face valid and there may have been a halo
effect in responding. For example, parents may have felt a strong pull to respond in a
religiously faithful manner to questions related to their spiritual coping and health. With
respect to the Positive A jfect Index, it is unclear what criteria parents used to determine
how close they felt to their child. Future research might examine these relationships
further using clinical measures of the parent-child relationship such as direct observation
and rating by a professional trained in evaluating relationship quality. External ratings of
parental coping strategies and well-being through clinical interviews may facilitate

further validity in measuring these constructs as well.

105

Qualitative responses offered by participants in the religious coping and well-
being questionnaires suggested that religiosity is an important aspect of parents’ lives that
is relevant to their parenting a child with special needs. The efforts made to adjust the
Brief RCOPE and Spiritual Wellbeing Scale items to be appropriate for non-monotheistic
faiths appeared to result in alienation of many participants in this predominantly Christian
sample. Future research on highly religious groups should take care to ensure that any
measures of religious coping and religious well-being be culturally appropriate to that
speciﬁc population.

As previously discussed, service utilization was analyzed through a count of
number of services accessed and this variable did not independently predict
psychological well-being when other variables were included. Analysis of speciﬁc types
of services accessed may clarify the important question of if and what types of services
inﬂuence parental well-being. Inclusion of larger sample Sizes for clinical groups where
socioeconomic status is more equally distributed across groups would be important to
addressing this question as well.

Methods. Another risk with having parents provide information on both their
coping and well-being is source bias, such that correlations between these variables may
have been partially attributed to the fact that the data were provided by the same source.
Child adaptive behaviors and problems were also provided by parents, however the
source bias effect was partially offset by teacher ratings of the child’s ﬁinctioning.
Teacher ratings were only achieved for 64% of the children included in this study.
External ratings of parent variables and child functioning would address the problem of

source bias in future research to further clarify the relationships between these constructs.

106

As previously discussed, one explanation for failure to replicate narrative
accounts of positive transformation as a result of having a child with PDD is that perhaps
only a small subset of parents experience this transformation. If this is indeed the case, it
would be important to identify these parents, conduct careful qualitative research on their
experiences and coping, and construct measures to capture the positive well-being they
describe to ensure that research on positive adaptation includes the relevant well-being
constructs. Following, identiﬁcation of moderators of positive well-being could be re-
examined as relevant to the resulting constructs of well-being.

Transformative effects of having a child with special needs cannot be effectively
identiﬁed without conducting longitudinal research. Data on coping and psychological
well-being must be collected prior to experience of child related stressors and parents
must be followed during the transformative process. Recruitment of a representative
sample would be difﬁcult, however possible through recruiting those with genetic risk of
having a child with PDD. Family members of people diagnosed with PDD could be
recruited prior to having children. This research may also be accomplished through
collaboration with large scale longitudinal child development research, though the low
base-rate of PDD makes this method difﬁcult.

Future research might also examine similarities among parents who have shown
positive adaptation versus negative adaptation through clustering these two groups. The
current study did not have a large enough sample of parents with clinically signiﬁcant

anxiety and depression to accomplish this analysis.

107

Conclusions.

Despite limitations, this study provides important insight into how research on
parental coping with having a child with DD could proceed. Additionally, results provide
important implications to policy and practice relative to children with PDD and their
families. Although support for Speciﬁc risk was not found among parents of children
with PDD, as a group parents of children with DD experienced increased risk for
depression symptomatology relative to parents of typically developing children. This
increased risk occurred despite accessing professional services. Findings thus suggest
that additional supports are necessary and that parents of children with DD may have
limited access to effective treatments across.

This study departed from tradition of focusing on negative outcomes among
parents of children with Special needs. Positive affect and attitudes toward life are
important aspects of parent health that are inﬂuenced by having a child with DD.
Additionally, the study suggested that predictors of positive adaptation are different from
predictors of negative adaptation. Researchers and clinicians Should not neglect positive
affect and positive attitudes in parent functioning and assume that negative adjustment
negates the experience of positive emotions and attitudes. Continued neglect of positive
well-being would limit the ability of clinicians to fully understand and support parent’s
and researcher’s ability to identify variables that support parents.

Access to supportive relationships (parent-child relationship included) and
abstaining from aggressive and avoidant coping strategies predict positive outlook about
one’s life. In terms of reduction of risk for depression, abstaining from avoidant and

aggressive coping strategies and reliance on positive and active coping methods appear to

108

be most helpful. Professionals should continue to support parents in to be actively
involved in their child’s treatment as it appears that parents beneﬁt from these actions.
Assuming that more effective services would support additional beneﬁt of active coping
methods on parental well-being, additional research on treatment efﬁcacy Should be
conducted.

Another important contribution of this study was it’s inclusion of the parent-child
relationship as a major source of support for parents of children with PDD. Results
supported that the parent-child relationship is signiﬁcantly and more broadly related to
parent well-being than other social supports. F amin-centered treatment involving parents
in the therapeutic process with children with PDD as well as targeting the parent-child
relationship clinically would not only beneﬁt parental health, but would undoubtedly also

beneﬁt the children.

109

APPENDICES

110

APPENDIX A

111

Identifying Information

 

(This information will be ﬁled separately from questionnaire responses to protect your and your child’s

Parent Information:

conﬁdentiality)

 

 

 

 

 

 

 

 

Name: Age:

Relation to Child: a biological mother
Cl adoptive mother a biological father
a step-mother o adoptive father
a other (please specify): o step-father

Address:

City: State: Zip Code:

Phone: ( ) -

7 Child Information:
Name: Age:
Date of Birth: Gender: M / F

 

112

 

Social History Form

Parent Information:

 

 

Ethnicity (check all that apply):
a Non-Hispanic/ Latino White

a Hispanic/Latino

in African American

[3 Other:

Marital Status:

 

Cl married
[:1 divorced

[2] single
a separated

a American Indian or Alaska Native
[3 Asian
1:] Native Hawaiian or other Pacific Islander

:1 widowed

Do you have sole or joint custody of this child (circle one)? sole joint

Religious Affiliation: a Agnostic
a Catholic :1 Muslim
[:1 Lutheran El Buddhist
1:1 Baptist :1 Hindu

a Protestant c1 Judaism
a Christian, Non-denominational CI None

a Mormon [:1 Other:

Highest educational achievement:
[:1 Less than 9th grade
in Some High School
a High School Graduate / GED

Employment Status:

 

 

o Some college / specialized training
a 4 year college graduate
a Graduate / professional degree

 

a Full Time a Retired
:1 Part Time I: Homemaker
a Laid Off [:1 Other (specify)
Occupation:
Household Income:
:1 less than $15,000 a $15,000 to $29,999 a $30,000 to $44,999
a $45,000 to $69,999 a $70,000 to 100,000 in Over $100,000

Do you have any physical or mental
health problems? (If yes, please list):

 

 

 

 

Number of other children living in your home (including the child for this study):

How many of these children (including child for this study) have a medical /
psychological disability? Please indicate each diagnosis that each child has.

This Child: Sibling 3:
Sibling 1: Sibling 4:
Sibling 2: Sibling 5:

 

113

 

Child Information: (the following are questions involving the child for this study only)

 

 

Ethnicity (check all that apply):

a Non-Hispanic / Latino White a American Indian or Alaska Native
in Hispanic/Latino Cl Asian

1:] African American a Native Hawaiian or other Pacific
[:1 Other: Islander

 

Grade in School:

 

School District: (or name of school)

 

Is your child in a special classroom? Yes a full day a No
[:1 half day
[:1 other
Age at
Diagnosis:

Does your child qualify for special education services because he /
she was evaluated to be Autism Impaired (Al)? Y / N

 

Please indicate ALL diagnoses that currently apply to this child and how old the
child was when the diagnosis was made: Age at Diagnosis:

[:1 Autistic Disorder
:1 Asperger’s Disorder I Asperger Syndrome

a Pervasive Developmental Disorder — Not Otherwise Specified
[:1 Fragile X syndrome

a Down Syndrome

El Attention Deficit I Hyperactivity Disorder (ADHD)

o Other (please specify):

 

Did your child receive a medical diagnosis from any of the following
professionals? (check all that apply)

[:1 Family Physician

a Psychologist (Psy.D. / PhD.)

a Psychiatrist (MD)

[:1 Neurologist

o Other (please specify):

 

Is your child currently taking any prescription medications? (if yes, please list
below):

 

 

 

 

 

 

 

114

 

 

 

Developmental Milestones:
At what age did your child first do the following? (indicate year/month of age)
Crawl
Walk
Speak first words
Speak in sentences
Toilet Trained

 

 

 

 

 

Did your child experience a loss of skills? Y N
If YES, which skill(s)?

 

Does your child use vocabulary that is advanced in comparison other children
his / her age? ‘ Y N

Which of the following do you believe is representative of this child’s intellectual
ability? .

a Mentally Impaired c1 Below Average :1 Average [:1 Above Average

0 Superior

Please describe aspects of this child that you enjoy:

 

 

What do you believe are strengths that this child has:

 

 

If your child has an Autism Spectrum Disorder or ADHD, do you believe that
your child can be cured? Yes No Don’t Know

If your child has an Autism Spectrum Disorder or ADHD, how do you believe
your child developed the disorder?

 

 

 

115

 

Professional Services and Support Questionnaire
We are interested in the types of services that parents obtain to help themselves, their
families, and their child. The following are a list of services directed at helping you /
your family and a list of services directed at helping your child. Please indicate whether
you or your child has participated in any of these services now OR in the past. For each
service / treatment used, please also indicate how effective you found it to be.

Services for you or your whole family:

 

 

 

 

 

Current Past Degree of Helpfulness
Extremely
Not at all
Helpful
1. Individual counseling /
psychotherapy D D 1 2 3 4 5
2. Psychiatric Medication (i.e.,
antidepressant, anti-anxiety 1:] [:1 1 2 3 4 5
drugs)
3. Couples therapy C] D 1 2 3 4 5
4. Family therapy 1:] El 1 2 3 4 5
5. Parent support group E] El 1 2 3 4 5
6. Respite Care I] E] 1 2 3 4 5
7. Parent Training E] El 1 2 3 4 5
8. Other(s) (please specify)
[3 [:1 1 2 3 5
Cl Cl 1 2 3 5
Services for this child:
Current Past Degree of Helpfulness
Extremely
Not at all
Helpful
1. Individual counseling /
psychotherapy D [3 1 2 3 4 5
2. Behavior Therapy (i.e., ABA) Cl C] 1 2 3 4 5
3. Social Skills Group El [:1 1 2 3 4 5
4. Psychiatric Medication III E] 1 2 3 4 5
5. Vitamin Therapy El E1 1 2 3 4 5
6. Chelation / Detoxiﬁcation
Therapy [:1 El 1 2 3 4 5
7. Disability support group Cl C] 1 2 3 4 5

 

116

 

8. Sensory Integration Therapy
/
Occupational Therapy
9. Relationship Development
Intervention (RDl)
10. Music Therapy

1 1. Chiropractic Therapy

12. Special Diet (e.g. gluten
free)
13. Facilitated Communication

14. Others (Please Specify)

 

 

 

DDDDDD

DE]

DDDDDD

DUI]

NNNNN

UJUJUJUJUJ

DJ

AAA-[>43

A

MUIUIMM

 

117

 

POSITIVE AFFECT INDEX
The following questions ask about different aspects of you relationship with your child.
Please circle the answer that best describes each aspect of how you view your child or

how you believe your child views you.

 

1. How well do you feel that YOU
UNDERSTAND this child?

A. Not at all well

B. Not too well

C. Somewhat well

D. Pretty well

E. Very well

F. Extremely well

6. How well do you feel this child
UNDERSTANDS YOU?

A. Not at all well

B. Not too well

C. Somewhat well

D. Pretty well

E. Very well

F. Extremely well

 

2. How much do you trust this child?

A. Not at all
B. Not too much
C. Somewhat

7. How well do you feel your child trusts
you?

A. Not at all

B. Not too much

C. Somewhat

D. Pretty much D. Pretty much
E. Very much E. Very much
F. Extremely F. Extremely

 

3. How fa_ir do you feel you are toward
this child?

A. Not at all fair

B. Not too fair

C. Somewhat fair

D. Pretty fair

E. Very fair

F. Extremer fair

8. How fair do you feel this child is
toward you?

A. Not at all fair

B. Not too fair

C. Somewhat fair

D. Pretty fair

E. Very fair

F. Extremely fair

 

4. How much do you respect this
child?

A. Not at all

B. Not too much

C. Somewhat

9. How much respect do you feel from
this child?

A. None at all

B. Not too much

C. Somewhat

D. Pretty much D. Pretty much
E. Very much E. Very much
F. Extremely F. Extremely

 

 

5. How much Igv_e do you feel for this
child?

A. Not at all

B. Not too much

C. Somewhat

D. Pretty much

E. Very much

F. Extremely

10. How much love do you feel this
child has for you?

A. Not at all

B. Not too much

C. Somewhat

D. Pretty much

E. Very much

F. Extremely

 

118

 

 

 

11. Taking everything into consideration, HOW CLOSE do you feel is the
relationship between you and your child at this point in your life?

A. Not at all close

B. Not too close

C. Somewhat close

D. Pretty close

E. Very close

F. Extremely close

 

Adapted from Bengtson 8. Black (1973).

119

 

to raising a child with a disability versus a child without a disability. There are lots of
ways that people respond to parenting challenges. We are interested in how you try to

Brief Cope

We are interested in ways that people deal with difficult or stressful situations related

deal with these situations. This questionnaire asks you to indicate what you generally do
in difficult situations related to the child identiﬁed for this study.

Each item says something about a particular way of coping. Please circle to what

extent you do what each item says. Don't answer on the basis of whether it seems to be
working or not—just whether or not you're doing it. Try to rate each item separately in

your mind from the others. Make your answers as true FOR YOU as you can as they

apply to your parenting of this child.

 

 

ldothisa
ldon't do Ido this a medium ldo this
this at all little bit amount a lot
1. I turn to work or other activities to take
my mind off things. 1:] [j [:1 1:]
2. l concentrate my efforts on doing
something about the situation I'm in. 1:] 1:1 1:] [j
3. Isa to m self "th's isn't real."
y y ' III [:1 {:1 III
4. I use alcohol or other drugs to make
myself feel better. [:1 III E] CI
5. I t t' l ortf om th .
ge emo Iona supp r o ers El E1 El [:1
6.I' t' tdl'th't.
give up rying 0 ea w: I [I E] E] El
7. I take action to try to make the situation
better. [I I] [I C]
8. l fsetobl' etht‘th h eed.
reu eiev at as app n III E] III E]
9. I say things to let my unpleasant
feelings escape. E] E] El CI
10. I ethel d d'efo thr eol.
g panavrcrmoeppe III E] III [II
11. I use alcohol or other drugs to help me
get through it. 1:] [j 1:] El
12. I try to see it in a different light, to make
it seem more positive. [:1 [j [:1 [:1
13. l criticize myself.
III III E] El

 

 

I20

 

 

 

14.

15.

16.

17.

18.

19.

20.

21.

22.

23.

24.
25.
26.
27.

28.

I try to come up with a strategy about
what to do.

I get comfort and understanding from
someone.

I give up the attempt to cope.

I look for something good in what is
happening.

I make jokes about it.

I do something to think about it less,
such as going to movies, watching TV,
reading, daydreaming, sleeping, or
shopping.

I accept the reality of the fact that it has
happened.

I express my negative feelings.

I try to ﬁnd comfort in my religion or
spiritual beliefs.

I try to get advice or help from other
people about what to do.

I learn to live with it.

I think hard about what steps to take.

I blame myself for things that happened.

I pray or meditate.

I make fun of the situation.

ldont do
this at all

El

I do this
a little bit

[:1

I do this a
medium
amount

[:1

I do this
a lot

C]

 

Adapted from Carver (1997)

121

 

Brief RCOPE-revised

 

We are interested in ways that people deal with difﬁcult or stressful situations related
to raising a child with a disability. There are lots of ways that people respond to these
challenges. We are interested in how you try to deal with these situations. This
questionnaire asks you to indicate what you generally do in difﬁcult situations related to
the child for this study.

Each item says something about a particular way of coping. Please circle to what
extent you do what each item says. Don't answer on the basis of whether it seems to be
working or not—just whether or not you're doing it. Try to rate each item separately in
your mind from the others. Make your answers as true FOR YOU as you can.

 

 

 

Higher Power.

I do this
I a
don't do I do this medium I do this
this at all a little bit amount a lot

1 Looked for a stronger connection with my

God or a Higher Power. D D D D
2 Sought love and care from my God or a

Higher Power. D D D D
3 Sought help from my God or a Higher

Power in letting go of my anger. D D D D
4 Tried to put my plans into action together

with my God or a Higher Power. D D D D
5 Tried to see how my God or a Higher

Power might be trying to strengthen me in 1:1 1:1 [:1 1:]

this situation.
6 Asked forgiveness for my suns. [3 III CI III
7 Focused on religion to stop worrying

about my problems. D D D D
8 Wondered whether my God or a Higher

Power had abandoned me. D D D D
9 Felt punished by my God or a Higher

Power for my lack of devotion. D D D D
10 Wondered what I did for my God or a

Higher Power to punish me. [:1 D D D
11 Questioned my God's or a Higher Power’s

love for me. D D D D
12 Wondered whether my church, temple,

synagogue, or other place of worship had [1 1:1 1:] 1:1

abandoned me.
13 Decided the devil or an evil spirit made

this happen.
14 Questioned the ower of m God or a

p y E] El [:1

 

Adapted from Pargament, Smith, Koenig, and Perez (1998).

122

 

CES-D
Below is a list of some of the ways you may have felt or behaved. Please indicate how
often you have felt this way during the past week.

 

 

During the Past Week
Rarely or Some or Occasionally
none of a or a Most or
the time little of moderate all of
(less the amount of the time
than time (1 -2 time (5-7
1 day) days) (3-4 days) daLs)
1. I was bothered by things that Cl El 1:1 1:]
usually don't bother me.
2. I did not feel like eating; my El [:1 1:1 1:1
appetite was poor.
3. I felt that I could not shake off the El 1:1 1:1 1:]
blues even with help from my family
or friends.
4. I felt that I was just as good as El 1:1 1:1 [:1
other people.
5. I had trouble keeping my mind on [3 E] 1:1 [:1
what I was doing.
6. Ifelt depressed. 1:1 1:1 El III
7. I felt that everything I did was an D 1:1 1:1 1:1
eﬁon.
8. Ifelt hopeful about the future. III [:1 1:1 1:1
9. I thought my life had been a III 1:1 1:1 [:1
failure.
10. I felt fearful. 1:1 [:1 E] El
11. My sleep was restless. [I 1:1 1:1 [:1
12. l was happy. [:1 [:1 [II III
13. I talked less than usual. [:1 1:1 1:1 [:1
14. I felt lonely. [:1 E] E] El
15. People were unfriendly. 1:1 1:1 1:1 1:1
16. I enjoyed life. 1:] [:1 III III
17. I had crying spells. 1:] El 1:1 [I
18. Ifelt sad. 1;] [:1 III III
19. I felt that people disliked me. III El 1:1 1:1
20. I could not get "going." El 1:1 [:1 III

123

Beck Anxiety Inventory

Below is a list of common symptoms of anxiety. Please carefully read each item in the
list. Indicate how much you have been bothered by that symptom during the past month,
including today, by circling the number in the corresponding space in the column next to
each symptom.

 

Durinlthe Past Month
Mildly but Moderately

it didn't - it wasn’t Severely — it
bother me pleasant at bothered me
Not At All much. times a lot

 

Numbness or tingling

D
D
D
D

Feeling hot
VVobenessinlegs
Unable to relax

Fear of worst happening
Dizzy or Iightheaded
Heart pounding/racing
Unsteady

Terrified or afraid
Nervous

Feeling of choking
Hands trembling
Shaky / unsteady
Fear of losing control
Difficulty in breathing
Fear of dying

Scared

Indigestion

Faint / Iightheaded
Face flushed

DDDDDDDDDDDDDDDDDDDD
DDDDDDDDDDDDDDDDDDDD
DDDDDDDDDDDDDDDDDDDD
D D'DDDD DD D DDDD D D DDDD D

Hot/cold sweats

124

Subjective Happiness Scale (SHS)
For each of the following statements and/or questions, please circle the point on the scale
that you feel is most appropriate in describing you.

1. In general, I consider myself:

1 2 3 4 5 6 7
not a very a very
happy person happy person
2. Compared to most of my peers, I consider myself:
1 2 3 4 5 6 7
less happy more happy

3. Some people are generally very happy. They enjoy life regardless of what is going on,
getting the most out of everything. To what extent does this characterization describe
you?

1 2 3 4 5 6 7
not at all a great
deal
4. Some people are generally not very happy. Although they are not depressed, they
never seem as happy as they might be. To what extent does this characterization
describe you?

1 2 3 4 5 6 7
not at all a great
deal

The Satisfaction with Life Scale

DIRECTIONS: Below are ﬁve statements with which you may agree or disagree. Using
the 1-7 scale below, indicate your agreement with each item by placing the appropriate
number in the line preceding that item. Please be open and honest in your responding.

1 = Strongly Disagree 5 = Slightly Agree
2 = Disagree 6 = Agree
3 = Slightly Disagree 7 = Strongly Agree

4 = Neither Agree or Disagree
1. In most ways my life is close to my ideal.
___2. The conditions of my life are excellent.
3. I am satisfied with life.
_4. So far I have gotten the important things I want in life.

5. If I could live my life over, I would change almost nothing.

125

Scales of Psychological Well-being
The following set of questions deals with how you feel about yourself and your life.
Please remember that there are no right or wrong answers. Circle the number that best
describes your present agreement or disagreement with each statement.

 

 

 

 

 

 

 

 

Strongly Disagree Disagree Agree Agree Strongly
Disagree Somewhat Slightly Slightly Some Agree
what

In general, I feel I am in charge of the 1 2 3 4 5 6
situation in which I live.

The demands of everyday life often get 1 2 3 4 5 6
me down.

I do not ﬁt very well with the people and l 2 3 4 5 6
the community around me.

I am quite good at managing the many I 2 3 4 5 6
responsibilities of my daily life.

I often feel overwhelmed by my 1 2 3 4 5 6
responsibilities.

I generally do a good job of taking care 1 2 3 4 5 6
of my personal ﬁnances and affairs.

1 am good at juggling my time so that I I 2 3 4 5 6
can ﬁt everything in that needs to get

done.

I have difﬁculty arranging my life in a 1 2 3 4 5 6
way that is satisfying to me.

I have been able to build a home and a 1 2 3 4 5 6
lifestyle for myself that is much to my

liking.

I am not interested in activities that will 1 2 3 4 5 6
expand my horizons.

I don't want to try new ways of doing 1 2 3 4 5 6
things--my life is ﬁne the way it is.

I think it is important to have new 1 2 3 4 5 6
experiences that challenge how you think
about yourself and the world.

When I think about it, I haven't really 1 2 3 4 5 6
improved much as a person over the
years.

1 have the sense that l have developed a l 2 3 4 5 6
lot as a person over time.

 

 

126

 

 

 

 

 

 

 

 

 

Circle the number that best describes Strongly Disagree Disagree Agree Agree Strongly
your present agreement or disagreement Disagree Somewhat Slightly Slightly Some Agree
with each statement. what
I do not enjoy being in new situations 1 2 3 4 5 6
that require me to change my old
familiar ways of doing things.
For me, life has been a continuous 1 2 3 4 5 6
process of Ieaming, changing, and
growth.
I gave up trying to make big 1 2 3 4 5 6
improvements or changes in my life a
long time ago.
There is truth to the saying you can't I 2 3 4 5 6
teach an old dog new tricks.
Most people see me as loving and l 2 3 4 5 6
affectionate.
Maintaining close relationships has been I 2 3 4 5 6
difficult and frustrating for me
I often feel lonely because I have few 1 2 3 4 5 6
close friends with whom to share my
concerns.
I enjoy personal and mutual 1 2 3 4 5 6
conversations with family members or
friends.
I don't have many people who want to l 2 3 4 5 6
listen when I need to talk.
It seems to me that most other people 1 2 3 4 5 6
have more friends than I do.
People would describe me as a giving 1 2 3 4 5 6
person, willing to share my time with
others.
I have not experienced many warm and 1 2 3 4 5 6
trusting relationships with others.
I know that I can trust my friends, and 1 2 3 4 5 6
they know they can trust me.

I 2 3 4 5 6

I live life one day at a time and don't
really think about the ﬁJture.

 

 

127

 

 

 

Circle the number that best describes
your present agreement or disagreement
with each statement.

I tend to focus on the present, because
the future nearly always brings me
problems.

My daily activities often seem trivial and
unimportant to me.

I don't have a good sense of what it is I'm
trying to accomplish in life.

I used to set goals for myself, but that
now seems like a waste of time.

I enjoy making plans for the future and
working to make them a reality.

I am an active person in carrying out the
plans I set for myself.

Some people wander aimlessly through
life, but I am not one of them.

I sometimes feel as if I've done all there
is to do in life.

When I look at the story of my life, I am
pleased with how things have turned out.

In general, I feel conﬁdent and positive
about myself.

I feel like many of the people I know
have gotten more out of life than I have.

I like most aspects of my personality.

I made some mistakes in the past, but I
feel that all in all everything has worked
out for the best.

In many ways, I feel disappointed about
my achievements in life.

My attitude about myself is probably not
as positive as most people feel about
themselves.

Strongly Disagree Disagree
Disagree Somewhat Slightly

l 2 3
l 2 3
l 2 3
l 2 3
I 2 3
l 2 3
l 2 3
1 2 3
1 2 3
l 2 3
l 2 3
1 2 3
l 2 3
1 2 3
l 2 3

 

Agree Agree

Slightly Some

what
4 5
4 5
4 5
4 5
4 5
4 5
4 5
4 5
4 5
4 5
4 5
4 5
4 5
4 5
4 5

Strongly
Agree

 

128

 

 

 

 

 

 

 

 

 

 

 

 

 

 

The past had its ups and downs, but in I 2 3 4 5 6
general, I wouldn't want to change it.
When I compare myself to friends and l 2 3 4 5 6
acquaintances, it makes me feel good
about who I am.
Spiritual Well-being Scale

Circle the number that best describes 31“)“le Disagree D1987“? Agree Agree Strongly
your present agreement or disagreement Disagree Somewhat Sllghtl)’ Slightly Some Agree
with each statement. what
I can turn to a spiritual dimension 1 2 3 4 5 6
within myself for guidance.
1 have an inner strength. 1 2 3 4 5 6
I have experienced my own strength I 2 3 4 5 6
in times of struggle.
l have a sense of harmony or inner 1 2 3 4 5 6
peace.
My innemess or an inner resource 1 2 3 4 5 6
helps me deal with uncertainty in life.
I rely on an inner strength in hard 1 2 3 4 5 6
times.
I experience a spiritual dimension 1 2 3 4 5 6
that gives me strength and love.
Frequently meditating or praying 1 2 3 4 5 6
gives a sense of inner peace.
I get personal strength and support 1 2 3 4 5 6
from my God or a Higher Power.

I 2 3 4 5 6

I have a personally meaningful
relationship with God or a Higher
Power.

 

 

129

 

 

CARS — PARENT:
Symptom and Stress Rating Scale

 

SYMPTOMS

SYMPTOM
RATING

(Please rate each
symptom in your
child)
1 = Normal for

chronological age
2 = Mildly abnormal
3 = Moderately
abnormal
4 = Several abnormal

STRESS RATING
(How stressful is
this symptom for
you?)

1 = None at all

2 = A little bit
3 = Quite a bit
4=Emmme

 

1. Ability to relate to people (example:
does not return interest others show in
him / her)

 

2. Imitation (extent to which child
imitates, verbal or motor)

 

3. Appropriateness of emotions
(example: giggling, crying, etc.)

 

4. Unusual body movements and/or
repetitive motions or routines

 

5. Unusual ways of relating to objects
(example: spinning cups, lining up
objects)

 

6. Difficulty with change in the
environment (example: new living room
furniture)

 

7. Interest in visual information
(example: staring at lights, avoiding eye
contact)

 

8. Response to sounds (example:
overreacts or under-reacts)

 

9. Use of other senses (example:
mouthing, licking, smelling, rubbing)

 

10. Anxiety reaction (example:
separation from parents, unusual fears,
or absence of reaction)

 

 

11. Verbal communication (example:
mute, echoes, pronoun reversal,
repetitive language)

 

 

 

 

130

 

 

SYMPTOM STRESS RATING
RATING (How stressful is
(Please rate each this symptom for
symptom in your you?)
child)
SYMPTOMS 1 = Normal for 1 = None at all
chronological age 2 = A little bit
2 = Mildly abnormal 3 = Quite a bit
3 = Moderately 4 = Extreme
abnormal
4 = Several abnormal

 

12. Nonverbal communication (example:
use of or response to gestures)

 

13. Extremes of activity level (example:
high or low activity level)

 

14. Intellectual abilities (example: a
rating of 2 means an even impairment in
all intellectual areas; a rating of 4 means
some areas very impaired, other areas
normal or higher)

 

 

 

 

 

From: Bebko, Konstantareas & Springer ( I987) Journal ofAutism & Developmental Disorders

I31

APPENDIX B

132

Table 1.

Number of parents and children per study group

 

PDD ADHD Controls Total
n n n n (%)
Gender
Mothers 26 20 19 65 (71%)
Fathers l2 6 8 26 (29%)
Girls 3 3 13 19 (29%)
Boys 23 17 7 47 (71%)

 

133

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Table 4.

Principal Components Analysis using Varimax Rotation for

 

Brief C OPE items

Item Factor 1 Factor 2 Factor 3

14 .82

7 .77

2 .68

25 .64

20 .62 -.23

24 .5

17 .52 .23

12 .50 .40

6 .68

16 .64

26 .60 .21

8 .60

9 .59 .38

13 .59

19 .55

21 .55 .25

3 .49 -.20

1 .24

4 .83

11 .82

18 .38 .26 .53
28 .29 .33 .50

 

Note. Religion and social support items were removed from analyses.
Factor Loadings below .2 are not presented in this table for easier
interpretability.

136

Table 5.
Principal Components Analysis using Varimax Rotation

for Brief R-C OPE and religion items in Brief C OPE

 

Item F actorl Factor 2
22 .86

27 .89

1 .95

2 .95

3 .94

4 .94

5 .90

6 .85

7 .84

8 .77
9 .69
10 .82
ll .66
12 .76
I3 .29 .21
14 .78

 

Note. Items 22 and 27 are from the Brief COPE and the remaining
items are from the Brief R-COPE. Factor Loadings below .2 are
not presented in this table for easier interpretability.

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140

Table 9.
Hierarchical Regression Analyses Statistics Showing the Relationship of A ctive Positive

Coping on Each Positive Affect and Wellbeing Measure Controlling for Household

 

Income

B SE B 8 R24 FA
Happiness 3.10 .91 .35 .12 (1, 82) 11.66**
General Well-being .47 .14 .34 .11 (1, 80) 11.33**
Spiritual Well-being .60 .23 .28 .08 (1 , 82) 6.78**

 

*p g .05, **p g .01

141

Table 10.

Hierarchical Regression Analyses Statistics Showing the Relationship Between Resource

and Support Measures on Parental Affect and Wellbeing Measures Controlling for

 

Household Income
B SE B B R A FA
CESD a
Total Services .00 .00 .13 .12 (2, 85) = 1.65
Positive Affect Toward Child -.04 0.2 -.25 .06 (2, 85) = 615*
Positive Affect From Child .11 .04 .28 .07 (2, 85) = 7.28**
Parent-Child Closeness .08 .04 .24 .05 (2, 85) = 5.39*
Social Support -. 13 .01 -.10 .01 (2, 83) = .93
BA] b
Total Services .00 .00 .15 .02 (2, 85) = 2.06
Positive Affect Toward Child -.02 .01 -.13 .02 (2, 85) = 1.45
Positive Affect From Child .06 .04 .18 .03 (2, 85) = 2.76
Parent-Child Closeness .04 .03 .12 .01 (2, 85) = 1.31
Social Support .00 .01 .02 .00 (2, 83) = .04
Happiness c
Total Services .08 .14 .06 .00 (2, 84) = .35
Positive Affect Toward Child .67 .69 .10 .01 (2, 84) = .93
Positive Affect From Child -3.44 1.85 -.20 .04 (2, 84) = 3.47
Parent-Child Closeness -3.29 1.55 -.23 .05 (2, 84) = 4.52*
Social Support .87 .60 .15 .02 (2, 82) = 2.07
General Well-being d
Total Services .01 .02 .06 .00 (2, 82) = .33
Positive Affect Toward Child .25 .10 .25 .06 (2, 82) = 585*
Positive Affect From Child -.89 .27 -.34 .10 (2, 82) = 10.51““
Parent-Child Closeness -.73 .23 -.32 .10 (2, 82) = 1004“
Social Support .21 .09 .24 .06 (2, 80) = 555*
Spiritual Well-being c
Total Services .03 .03 .08 .01 (2, 84) = .57
Positive Affect Toward Child .27 .17 .17 .03 (2, 84) = 2.56
Positive Affect From Child -1.30 .45 -.31 .09 (2, 84) = 8.45**
Parent-Child Closeness -.71 .39 -.20 .04 (2, 84) = 3.34
Social Support .23 .15 .17 .03 (2, 82) = 2.14

 

Note. Positve Affect from Child and Parent-Child Closeness variables are reverse transformed. aR2 for
2

Step 1 = .12. bR for Step 1 = .08. CR2 for Step 1 = .05. dR‘2 for Step 1 = .10. e R2 for Step 1 = .02.

t 311*

p<.05, p<.Ol

142

Table l 1.

Hierarchical Regression Analysisfor Support and Coping Styles onto Depression

 

B SE B R24 FA
Step 1. .11 9.91**
Household Income -.03 .01 -.33**
Step 2. .14 735’”
Household Income -.02 .01 -.29**
Active Positive Coping -.05 .02 -.24*
Avoidant-Aggressive Coping .07 .03 .28**

 

* **
p _<_ .05, p 5 .01

143

Table 12.

Hierarchical Regression Analysis for Support and Coping Styles onto Composite Well-

 

being Score
B SE B B RZA FA
Step 1. .10 8.63**
Household Income .17 .06 .31**
Step 2. .28 11.77**
Household Income .06 .05 .12
Avoidant-Aggressive Coping -.75 .17 -.44**
Social Support .28 .08 .33**
Positive Affect from Child -.57 .26 -.21*

 

Note. To correct for non-normality, positive affect from child was reverse logarithmic transformed. Thus,

interpretation of the negative direction of the beta weights here should be that greater felt affect from child

was associated with increased well-being. Total model adjusted R2 = 0.35.

t *1!
p _<_ .05, p g .01

144

Table 13.
Inter-rater correlations for ,BASC -2 scales
Variable Maternal Paternal

Intemalizing Behaviors

1. Maternal ~-
2. Paternal .79**
3. Teacher .20 -.21

Extemalizing Behaviors

4. Maternal --

5. Paternal .73** --

6. Teacher .41 ** .09
Social Skills

7. Maternal --

8. Paternal .75** --

9. Teacher .73** .55**

Functional Communication

10. Maternal --
l l. Paternal .79** --
12. Teacher .83** .73**

 

* **
pEDi p501

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Table 16.
Regression Analyses Using Hierarchical Linear Modeling Statistics Showing
the Relationship Between BASC-Z Child Problems and Adaptive Skills onto

Parental Depression Controlling for Household Income

 

B F
Intemalizing Problems .19 (1, 85) = 3.57
Intemalizing Problems X Group -. 1 9 (1, 83) = .42
Extemalizing Problems .25 ( l, 85) = 573*
Extemalizing Problems X Group .58 (l, 83) = 2.06
Attention Problems .33 (1, 85) = 10.58**
Attention Problems X Group -.29 (l, 83) = .51
Social Skills -.27 (l , 85) = 6.99**
Social Skills X Group .40 (1, 83) = 1.29
Functional Communication -.21 (l, 84) = 3.98*
Functional Communication X Group -.06 (1 . 82) = .02

 

Note. Due to missing data, sample sizes for these analyses varied.

* *#
p < .05, p < .01

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Table 18.

Results of Hierarchical Linear Modeling Regressions Testing Moderation

of Child Stressors onto Parental Depression

 

Predictor Moderator B t
Extemalizing Problems
Active Positive Coping -.04 -.44
Avoidant-Aggressive -.07 -.78
Positive Affect from Child .04 .42
Intemalizing Problems
Active Positive Coping -. l 9 -2.0*
Avoidant-Aggressive -.O6 -.74
Positive Affect from Child .07 .76

 

Note. The positive affect from child variable was reverse logarithmic transformed to

correct for non-normality.

*

* it
p<.05, p<.01

150

Table 19.
Results of Hierarchical Linear Modeling Regressions Testing Moderation
of Child Stressors onto Parental Anxiety
Predictor Moderator B t
Extemalizing Problems

Avoidant-Aggressive .05 .53

Substance Abuse / Humor -. 17 -1.83
Intemalizing Problems

Avoidant-Aggressive -.05 -.62

Substance Abuse/Humor -.21 -2.56*

 

*

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p<.05, p<.Ol

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