AUTISM SPECTRUM DISORDER: THE RELATIONSHIP BETWEEN BIOMEDICAL
TREATMENT AND HEALTHY FAMILY FUNCTIOING.
By
Jill R Tschikof
DR. LINDA REED, PhD., Faculty Mentor and Chair
DR. VICTORIA GAMBER, PhD., Committee Member
DR. STEPHANIE WARREN, PhD., Committee Member
David Chapman, PhD., Dean, Harold Abel School of Psychology
A Dissertation Presented in Partial Fulfillment of the Requirements for the Degree
Doctor of Philosophy
Capella University
Add month Year (of approval)
1
© Jill Tschikof 2011
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Abstract
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Dedication
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Acknowledgements
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Table of Contents
CHAPTER 1. INTRODUCTION
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Background of the Problem
7
Background of the Study
8
Statement of the Problem
9
Purpose of the Study
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Rationale
11
Research Questions
12
Significance of the Study
13
Definition of Terms
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Assumptions and Limitations
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Nature of the Study
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Organization of the Remainder of the Study
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CHAPTER 2. LITERATURE REVIEW
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CHAPTER 3. METHODOLOGY
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CHAPTER 4. DATA COLLECTION AND ANALYSIS
CHAPTER 5. RESULTS, CONCLUSIONS, AND RECOMMENDATIONS
REFERENCES
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APPENDIX A. PARENT PARTICIPATION FLYER DISTRIBUTED AT SITE
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APPENDIX B. PROCEDURE AND INFORMATION FOR OFFICE STAFF
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APPENDIX C. SURVEY FOR MOTHERS TO ANSWER
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APPENDIX D. PROCEDURE AND INFORMATION FOR WEBSITES
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APPENDIX E. FLYER
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CHAPTER 1: INTRODUCTION
This study examines the relationship between biomedical treatment and healthy family
functioning in families who have a child diagnosed with autism spectrum disorder. More
specifically, this dissertation will consider the idea that when biomedical treatment is used in
families who have a child diagnosed with autism spectrum disorder their family will have a
higher level of healthy functioning.
This chapter will provide an overview of the study. This chapter includes the
introduction to the problem, background of the study, a statement of the problem, and purpose of
the study. The approach used in this study is discussed within the research questions and
assumptions, limitations, definitions and an overall nature of the study are discussed in this
chapter.
Background of the Problem
Autism Spectrum Disorder (ASD) is defined by Jepson & Johnson (2007) as one having
varying degrees of impairment in communication skills, social interactions, and restricted,
repetitive, or stereotyped patterns of behavior. Charles, Carpenter, Jenner & Nicholas (2008)
state that the behavior problem exhibited by children with ASD should be closely monitored.
Some of the most common behavior problems include impulsive behavior, aggression, tantrums,
ritualistic behaviors, and unstable moods which can come from anxiety, depression, and
hyperkinesis.
According to Rao & Beidel (2009) the behavioral problems exerted by children with
ASD often cause elevated levels of stress, depression, anxiety and emotional exhaustion for the
entire family. These problems as stated by Rao & Beidel (2009) also affect the family system in
7
other ways.
For example, parents of ASD children reported having little or no time for family
activities such as outings or vacations, having no room for spontaneity, and reported having
career restrictions and marital stress. (Rao & Beidel, 2009).
Background of the Study
The research on biomedical treatment is somewhat limited as it is not a widely accepted
form of treatment for children with autism. (Jepson & Johnson, 2007). However, since Autism
Spectrum Disorder is becoming more and more prevalent, it is becoming a more common topic
to research.
What the data does show, is that biomedical treatment, or the multi-tiered treatment
approach, according to Jepson & Johnson (2007) is a type of treatment that is working for many
children with autism. This type of treatment aims to replace what the child is missing, remove
what is causing the child harm, and break any cycle of inflammation that is present or keeps
presenting itself in the gastrointestinal system. By doing these things, children with autism can
begin to heal and recover, and families can begin to see changes in behavior, health, and
eventually establish healthier functioning for the entire family. (Jepson & Johnson, 2007).
Wong & Smith (2006) also discuss the use of biomedical treatment for children with
ASD. The authors define biomedical or complementary and alternative medicine as a group of
diverse medical systems, practices, or products that are not considered part of conventional
medicine. According to the authors, biomedical or alternative treatments are becoming very
popular amongst parents of children with ASD. (Wong & Smith, 2006).
According to Wong (2008) Complementary and Alternative Medicine (CAM) includes a
broad range of healing resources and encompasses all health systems, modalities and practices
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and includes their theories, and beliefs, except for those that are included in the politically
dominant health system of a specific society or culture.
The use of CAM in children diagnosed with ASD is most often combined with the use of
conventional medicine. (Golnik & Ireland, 2009; Hanson et al., 2006; & Wong, 2008.)
Statement of the Problem
According to Kanne (2006) autism is a complex diagnosis affecting the child’s behavioral
and cognitive manifestations along with the family system as a whole. The effects of autism on
the family system can cause emotional stress beginning even before a diagnosis has been made.
Kanne (2006) stated that understanding the nature of your child’s difficulties (cognitively and
behaviorally) is just the beginning stressor of raising a child with autism. Next, parents need to
examine how their child’s future will be impacted by their recent diagnosis, and decide which
treatment(s) will be the most beneficial.
Further research focusing on the impact on the family system when a child has been
diagnosed with autism is warranted in order to explore potential treatment. By attempting to
show that biomedical treatment can improve the functioning of families who have a child
diagnosed with autism, psychologists can examine emerging theories, and patterns, and provide
therapy and support for these families while they research, experiment, and chose which type of
treatment is best for their family system as a whole.
According to Duarte, Bordin, Yazigi, & Mooney (2005) parents raising a child diagnosed
with Autistic Spectrum Disorder (ASD), mothers in particular, are at high risk themselves of
developing or presenting with mental health problems. The authors suggest that researchers,
9
possibly psychologists, help parents find ways to deal with the stress of raising a child with ASD,
and in turn design better interventions. (Duarte et al., 2005).
This study will attempt to increase the body of knowledge available to researchers,
psychologists, and families, by determining whether or not biomedical treatment will increase
the level of healthy family functioning according to the FACES IV assessment by decreasing the
negative behaviors of children with ASD.
Life Innovations, Inc. is the founder of the FACES IV assessment and they provide a
spreadsheet and instructions which makes analyzing the results of their assessment simple and
manageable. Holding a Master’s Degree in Psychology meets the qualification requirement of
utilizing their assessment.
Purpose of the Study
Families who have a child diagnosed with autism spectrum disorder face various
challenges in their lives. This Ex Post Facto study will attempt to increase the body of
knowledge available to researchers, psychologists, and families, by attempting to determine
whether families using biomedical treatment will have healthier family functioning scores
according to the FACES IV assessment.
FACES IV is the assessment scale that will be used to determine the level of healthy
family functioning for each participant. FACES IV stands for family adaptability and cohesion
evaluation scales and the scales consist of six family scales, according to Olson, Gorall, & Tiesel
(2004). These scales assess the dimensions of family cohesion and family flexibility and include
two balanced scales and four unbalanced scales. According to Olson et al. (2004) there are 62
items on the assessment and address cohesion, flexibility, communication, and satisfaction.
10
FACES IV, has published levels of reliability and validity. According to Olson, Gorall & Tiesel
(2004) the reliabilities of the six FACES IV scales are as follows: Disengaged = .87, enmeshed
= .77, Rigid = .83, Chaotic = .85, Balanced Cohesion = .89, Balanced Flexibility = .80, and
Alpha reliability analysis was also run for the validation scales and ranged from .91 to .93.
The participants of the FACES IV assessment will be divided into two groups; mothers of
a child diagnosed with autism and have received biomedical treatment, and mothers of a child
who has been diagnosed with autism and has not received biomedical treatment. The scores that
are received through the FACES IV assessments will be used to determine if the families using
biomedical treatment have healthier family functioning. These scores might also lead to further
causation studies for autism, biomedical treatment, and healthy family functioning.
According to Harrington, Patrick, Edwards, & Brand (2006) some of the most popular
forms of biomedical or alternative treatments for Autistic Spectrum Disorder (ASD) include
dietary restrictions, dietary supplements, antifungals, chelation therapy, homeopathy, sensory
integration, secretin, and animal therapy. These different treatments can be used separately or
combined. Although the authors showed evidence of such treatment being used by many parents
of children with ASD, the authors discussed the treatment as being controversial and potentially
harmful. (Harrington et al, 2006). The authors suggested that practitioners use a non-judgmental
tone, and inquire about parental beliefs and current treatments in order to establish a more
trusting relationship with parents.
However, like most articles on ASD treatments, there is no mention of the psychological
impact biomedical treatment has on both the parents and the child. (Levy & Hyman, 2005;
Harrington et al., 2006). Harrington et al (2006) discuss the use of biomedical treatment; but
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they do not discuss how many parents achieved better behavior from their child after
implementing various treatments.
Rationale
This Ex Post Facto design will have an independent variable, biomedical treatment
(variable x) and a dependent variable, level of healthy family functioning (variable y). Using an
Ex Post Facto design, according to Leedy & Ormrod (2005) allows the researcher to make a
generalization about the population being studied, this factor is important when limiting the
study to parents of children with autism.
Research Questions
Research Question:
Is there a difference in the scores of healthy family functioning between families with a child
diagnosed with Autism Spectrum Disorder (ASD) who have received biomedical treatment and
families who have not received biomedical treatment according to the scores on the FACES IV
assessment?
Research Question 1a: Are families who use biomedical treatment more cohesive according to
the scores on the FACES IV assessment?
Research Question 1b: Are families who use biomedical treatment more flexible according to
the scores on the FACES IV assessment?
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Research Question 1c: Do families who use biomedical treatment have better communication
skills according to the scores on the FACES IV assessment?
Research Question 1d: Are families who use biomedical treatment more satisfied according to
the scores on the FACES IV assessment?
Significance of the Study
According to Kanne (2006) autism is a complex diagnosis affecting the child’s behavioral
and cognitive manifestations along with the family system as a whole. Autism begins to affect
the family system even before a diagnosis has been made. Kanne (2006) stated that
understanding the nature of your child’s difficulties (cognitively and behaviorally) is just the
beginning stressor of raising a child with autism. According to Kanne (2006) understanding how
autism can impact your child’s future, and which treatment options best suit your family, are just
a few of the stressor a parent raising a child with autism must face.
Further research focusing on the impact on the family system when a child has been
diagnosed with autism is warranted in order to explore potential treatment. (Duarte, Bordin,
Yazigi, & Mooney, 2005). By attempting to show a relationship between biomedical treatment
and healthy family functioning, psychologists can better understand the various treatment options
available to those raising a child with autism. Psychologists cannot offer biomedical treatment
themselves, but they can offer therapy services and support for those who are struggling with
their child’s diagnosis, and their journey toward a healthier family system.
13
According to Duarte et al. (2005) parents raising a child diagnosed with Autistic
Spectrum Disorder (ASD), mothers in particular, are at high risk themselves of developing or
presenting with mental health problems. The authors suggest that researchers, possibly
psychologists, help parents find ways to deal with the stress of raising a child with ASD, and in
turn design better interventions. (Duarte et al., 2005). This study will attempt to increase the
body of knowledge available to researchers, psychologists, and families, by determining whether
or not biomedical treatment will increase the level of healthy family functioning according to the
FACES IV assessment by decreasing the negative behaviors of children with ASD.
Definition of Terms
Autism Spectrum Disorder – Autism, according to Secco, Ateach, & Woodgate (2008) is
defined as a complex developmental disorder and is characterized by a triad of impairments in
reciprocal social interaction, communication, and restricted, repetitive and stereotypic patterns of
behaviors, interests, and activities. (Secco, L, Ateach, C, & Woodgate, R.L., 2008).
According to Crane & Winsler (2008) Autism has been described as being one of the
most devastating developmental disorders of childhood because it can cause disabilities in all
areas of psychological development, ranging from cognitive, language, and behavioral deficits to
impairments in social interaction. (Crane, J.L., &Winsler, A, 2008).
Biomedical Treatment – According to Baker (2007) the term biomedical refers to the
idea of medical problem solving. Baker (2007) states that it does not suggest a fixed set of tests
and treatments, but an approach that will help each individual child that is diagnosed on the
spectrum. According to Baker, (2007) it is the patient, not the protocol that is the expert and
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expresses their expertise by how they respond to treatments and tests which provides a guide for
further understanding the various biomedical options available.
Diagnoses – According to Crane & Winsler (2008) correctly diagnosing ASD is often
difficult because of the wide variation in the behaviors that are related to the diagnosis. Because
of this wide variety of behaviors, the creation of a category to include several diagnoses was
necessary. Found in this category, also referred to as Autism Spectrum Disorder includes the
classic diagnosis of Autistic Disorder as well as Asperger's Syndrome, & Pervasive
Developmental Disorder-Not Otherwise Specified [PDD-NOS], (Levy & Schultz, 2009). This
category, according to Levy & Schultz (2009) is found in the fourth edition of the Diagnostic and
Statistical Manual of Mental Disorders (DSM-IV; American Psychiatric Association, 1994) and
is labeled Pervasive Developmental Disorders.
FACES IV – FACES IV stands for family adaptability and cohesion evaluation scales and
the scales consists of six family scales, according to Olson, Gorall, & Tiesel (2004). These
scales assess the dimensions of family cohesion and family flexibility and include two balanced
scales and four unbalanced scales. According to Olson et al. (2004) there are 62 items on the
assessment and address cohesion, flexibility, communication, and satisfaction. The published
rates of validity and reliability are as follows: Disengaged = .87, enmeshed = .77, Rigid = .83,
Chaotic = .85, Balanced Cohesion = .89, Balanced Flexibility = .80, and Alpha reliability
analysis was also run for the validation scales and ranged from .91 to .93.
15
Family Systems Theory – According to The Bowen Center (2009) the family systems
theory is a human behavior theory that views the family as an emotional unit. It uses systems
thinking to describe the complex interactions within the unit. It is stated by The Bowen Center
(2009) that if one person in the family changes their functioning than it can be predicted that
there will be reciprocal changes in the functioning of others in the family. Bowen’s family
systems theory is based on the idea that the emotional system will affect most all human activity
and it is the principal driving force in the development of clinical problems. (The Bowen Center,
2009).
Healthy Family Functioning - According to Olson et al. (2004) FACES IV has a manual
that contains materials that can be used for administering the assessment, scoring the test, and
plotting the results. The scores of the two groups will be compared using a t-test. The t-test will
show the mean score of both groups and will in turn show which group has a higher level of
family functioning.
Assumptions
1. All mothers (participants) have a child with an Autism Spectrum Diagnosis.
2. Each participant will only take the assessment one time.
3. Each participant will fill out the assessment honestly.
4. All diagnosis will be given by qualified professionals.
5. All participants using biomedical treatment are honest about their treatment plans.
Limitations
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The present study will hope to add some very important findings to the current body of
knowledge regarding autism and family functioning. However, there are some limitations to
consider. First of all, this study asks volunteers to answers questions in a survey type format,
which could bring up issues as to how reliable their responses might be. Another limitation to
this study is the sample itself. For example, only mothers of children diagnosed with Autism
Spectrum Disorder are participants of this study, leaving out the feelings, and thoughts of fathers.
The family functioning scores might be different if both parents were to complete the survey.
However, the results are still important because it gives us an idea of how families are
functioning when they have a child diagnosed with autism and are or are not receiving
biomedical treatment. The results will give ideas and recommendations for future studies.
A third limitation to this study is that it uses self report data only. The study might be
more valid if the physicians of the children being diagnosed were able to give information on
how well the biomedical treatment is going, or even simply verify that each specific child has
been diagnosed and is or is not receiving biomedical treatment. However, for confidentiality
reasons, it is not possible to contact the physicians because the patient’s names will not even be
presented in the study. Another limitation for this study is that all participants will complete the
survey in an honest manner, whether or not the mothers are honest when answering the questions
will be up to them. Every child diagnosed with ASD functions at a different level and in a
different manner, which is a limitation for this study because each parents observations of their
child’s functioning might vary. One last limitation to this study is that not all doctors treating
autism in a “biomedical” way use the same protocol. Each case is looked at differently so there
cannot be any casual statements made about the protocol and how it could possibly work for
every child with autism, it can only be tried on each case.
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Nature of the Study (or Theoretical/Conceptual Framework)
Family Systems Theory
Individuality and togetherness, according to Kerr & Bowen (1988) are the two
counterbalancing life forces that are reflected from the operation of the families’ emotional
system. This system focuses on the development of the physical, emotional, and social
dysfunctions that bear a significant relationship to individuals and families, and how these family
systems respond and make adjustments. Autism Spectrum Disorder (ASD) is an example of a
dysfunction that can bear a significant impact on a family system.
Bowen (1985) discusses the family systems theory as a triangle, or a three-person system.
His best example of the family system or triangle system, is the father-mother-child triangle.
Although the pattern can often change, one parent is passive, distant, or weak and leaves the
conflict between the other parent and the child. The child is the weaker of the two and often
loses the battle and therefore comes to expect to lose. If the passive parent ever decides to attack
or challenge the aggressive parent the child will eventually learn how to take the outside position
and play the parents against each other. (Bowen, M., 1985).
According to The Bowen Center (2009) the family systems theory is a human behavior
theory that views the family as an emotional unit. It uses systems thinking to describe the
complex interactions within the unit. It is stated by The Bowen Center (2009) that if one person
in the family changes their functioning than it can be predicted that there will be reciprocal
changes in the functioning of others in the family. Bowen’s family systems theory is based on
the idea that the emotional system will affect most all human activity and it is the principal
driving force in the development of clinical problems. (The Bowen Center, 2009).
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Organization of the Remainder of the Study
Chapter 1 will present the introductory remarks that are related to Autism Spectrum
Disorder and the relationship between biomedical treatment and healthy family functioning. In
addition, descriptive information that describes the current study will be provided. The
statement of the problem, the purpose, significance, assumptions and limitations of the study,
and definitions of significant terms will also be provided in chapter 1.
Chapter 2 will provide a review of the contemporary and first hand literature that is
related to Autism Spectrum Disorder, biomedical treatment, and healthy family functioning. The
relationship between biomedical treatment and healthy family functioning in families with a
child diagnosed with Autism Spectrum Disorder will be assessed in this chapter.
Chapter 3 will review and report the methods used to address both the hypothesis and the
research questions.
Chapter 4 will present the analyses of the data that has been collected from the surveys
that mothers with a child diagnosed with ASD have taken. The results in relation to the research
questions will be discussed here as well.
Chapter 5 will present an analysis of the discussion of the findings and any implications
of the study. Conclusions will be made and recommendations for future studies will be
discussed.
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CHAPTER 2. LITERATURE REVIEW
Introduction
Autism Spectrum Disorder (ASD) is used by Myers, & Plauche’ Johnson (2007) to
include autistic disorder, Asperger’s disorder, and pervasive developmental disorder-not
otherwise specified, defined by the Diagnostic and Statistical Manual of Mental Disorders,
Fourth Edition, Text Revision (DSM-IV-TR) (2000) as the child having varying degrees of
impairment in communication skills, social interactions, and restricted, repetitive, or stereotyped
patterns of behavior. Charles, Carpenter, Jenner & Nicholas (2008) state that the behavior
problem exhibited by children with ASD should be closely monitored. Some of the most
common behavior problems include impulsive behavior, aggression, tantrums, ritualistic
behaviors, and unstable moods which can come from anxiety, depression, and hyperkinesis.
According to Rao & Beidel (2009) the behavioral problems exerted by children with
ASD often cause elevated levels of stress, depression, anxiety and emotional exhaustion for the
entire family. These problems as stated by Rao & Beidel (2009) also affect the family system in
other ways.
For example, parents of ASD children reported to having a compromised quality of
life. (Lee, Harrington, Louie, & Newschaffer, 2007). According to Lee, Lopata, Volker,
Thomeer, Nida, Toomey, Chow, & Smerbeck (2009) even families whose child is considered to
be on the higher end of the autism face challenges in many aspects of everyday life. Volkmar &
Klin (2000) reported that children who are at the higher end of the autism spectrum still have
circumscribed interests that can limit the family’s activities, and narrow participation in any
other activities of interest for the rest of the family.
This chapter presents a significant amount of information regarding the critical issues and
theoretical structures of ASD, their secondary responses, and their effect on family functioning.
This chapter will also present a significant amount of information regarding biomedical
20
treatment (what is also referred to in the literature as complementary and alternative medicine,
CAM) and the idea that it can affect the secondary responses of ASD and improve family
functioning.
The current literature regarding ASD, biomedical treatment, and it’s relevance to family
functioning was limited at Capella University’s library when conducting a search, using a variety
of database (e.g. ProQuest Journals, PsychArticles, Psychology: A SAGE Full-Text Collection)
with searches using key words such as “autism + family functioning”, “autism + biomedical
treatment”, “complementary and alternative medicine + autism”, “autism + diagnosis”, “autism +
behavior problems”, “autism + communication”, “autism + stress”, “gluten free + autism”,
“casein free + autism”, “autism + supplements”, “autism + antifungals”, and “autism + FACES
IV”. Supplementary resources in the form of published books; journal articles; and relevant,
reputable websites were used in the literature review in order to expand and synthesize the
relationships among the constructs that will be empirically tested.
The Origins of Autistic Disorder
It was in the year 1943 that Dr. Leo Kanner discovered the disorder that is now called
Autistic Disorder (National Institute of Mental Health, 2004). Dr. Kanner of the Johns Hopkins
Hospital studied a group of 11 children and introduced us to the label, Early Infantile Autism.
Dr. Hans Asperger, a scientist from Germany, introduced us to another label or disorder, his
label was called Asperger’s Syndrome, a milder form of Early Infantile Autism. (National
Institute of Mental Health, 2004).
Autistic Disorder as defined by The American Psychiatric Association (2000) as having
noticeably abnormal or developmental impairments in the areas of social interaction and
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communication and a distinct restricted selection of interests and activities. The degree of
impairment, whether it be abnormal or developmental will vary greatly between individuals,
depending on their developmental level and chronological age. According to the American
Psychiatric Association (2000) impairment due to Autistic Disorder can be found in the child’s
social interactions, nonverbal behaviors, peer relationship development, and impairment in
communication, both verbal and nonverbal.
The American Psychiatric Association (2000) also notes that individuals who live with
Autistic Disorder have markedly different patterns of behavior. These patterns are abnormal in
their intensity and focus and include activities and interests that are restricted, repetitive, and
stereotyped. By definition, the American Psychiatric Association (2000) state that any period of
normal development must not extend past the age of 3. According to Crane & Winsler (2008)
Autism has been described as being one of the most devastating developmental disorders of
childhood because it can cause disabilities in all areas of psychological development.
Background of Autism Spectrum Disorder
According to Levy et al., 2009 and Myers & Plauche’ Johnson, 2007 the term Autism
Spectrum Disorder (ASD) has been used to include and discuss Autistic Disorder, Asperger’s
Syndrome, and Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS), as
they are diagnosed by the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition,
Text Revision (DSM-IV-TR). Levy et al., 2009; Jepson & Johnson, 2007; & National Institute
of Mental Health, 2004, describe autism spectrum disorders as being characterized by varying
degrees of impairment in communication skills, social skills, and restricted, repetitive, or
stereotyped patterns of behavior.
According to Levy et al. (2009) clinical signs of autism can
22
usually be detected by age 3, but typical language development might inhibit identification.
Volkmar (2008) stated that younger siblings of children with autism have shown signs of autism
in their lack of social responsiveness, inhibited communication, and characteristic play by the
age of 6-12 months.
Autism Spectrum Disorders affects approximately 1 in 110 children, according to the
Centers for Disease Control (CDC) and Prevention (2006). The CDC (2006) reports that of the
children diagnosed with Autism Spectrum Disorders, 1 in 70 are boys and 1 in 310 are girls.
These numbers support the data that the prevalence of ASD’s have increased from 2002 to 2006.
Delay in language skills, according to the CDC (2006) is the most common concern that is
noticed by the child’s parent, teacher, or health care provider. A developmental loss of skill or
“regression” has been noted as grounds for ASD assessment. (CDC, 2006).
Impairment of Communication and Social Skills
Communication Skills
Children with Autism Spectrum Disorder, according to Myers, Plauche’ Johnson, & the
Council on Children With Disabilities (2007) have deficits in social communication. Levy et al.
(2009) discuss the core deficiencies of communication in children with autism as including:
Delay in verbal language without non-verbal compensation (e.g., gestures);
impairment in expressive language and conversations, and disturbance in
pragmatic language use; stereotyped, repetitive, or idiosyncratic language; and
delayed imaginative and social imitative play. (p. 2)
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According to the American Psychological Association (2000) children who are diagnosed
with ASD have impairments in communication skills which inhibit their ability to understand or
respond to simple direction and questions. A. Davis (personal communication, 2009) stated that
the inability to communicate is one of the reasons why children diagnosed with ASD turn to
tantrums and other behavior problems. If they are unable to tell with others what they need, or
how they feel, they have to turn to other methods of non-verbal communication. (A. Davis,
personal communication, 2009) Hundert & Delft (2009) stated that most children with autism
spectrum disorders need to be taught beginning communication skills. In a study conducted by
Peterson, Larsson, & Riedesel (2003), children with ASD have to be taught simple receptive
discrimination such as touching requested objects. Hundert & Delft (2009) reported that there
are multiple studies that suggest children who function on the higher end of the autism spectrum
are successful at learning how to answer factually based “wh-“ (who, what, when, where, and
why) questions, which is the first step in learning how to ask “wh-“ questions.
Social Skills
The Autism and Developmental Disabilities Monitoring (ADDM) Network (N.D.) state
that children with ASD have can have difficulties, or even show an absence in the ability to
engage in the following social skills: pretend play, showing interest when another person points
out an object, pointing to an object of their interest, making eye contact with other individuals,
understanding feelings whether it be their own or someone else’s, listening when other people
talk to them, cuddling or showing affection to others, knowing how to play and relate with
others, speak in normal language with others (not echolalia), expressing their needs, appropriate
use of toys, and appropriately reacting to smells, sounds, tastes, and the feel or look of certain
objects. The ADDM network (N.D.) also state that children with ASD commonly engage in
24
repetitive or unusual behaviors such as arm flapping, making inappropriate or unusual noises,
racking from side to side, and walking on their toes. Levy et al. (2009) stated that social deficits
can be present in those as young as 6-12 months of age, and early detection will result in quicker
support for families with the use of intervention services. According to Levy et al. (2009) some
of the domains of socialism that are affected by ASD include:
Impaired use of non-verbal behaviors to regulate interactions; delayed
peer interactions, few or no friendships, and little interaction; absence of
seeking to share enjoyment and interests; delayed initiation of interactions;
and little or no social reciprocity and absence of social judgment. (p. 2)
Behavior Problems Exhibited by Children With Autism Spectrum Disorder
According to Baker, Blacher, Crnic & Edelbrock (2002) children who have
developmental disabilities are more likely to exhibit behavior problems than children who are
typically developing. Charles et al. (2008) state that the most common behavior problems
exhibited by children diagnosed with ASD include impulsive behavior, aggression, tantrums,
ritualistic behaviors, and unstable moods which can come from anxiety, depression, and
hyperkinesis. Koegel, Schreibman, Loos, Dirlich-Wilhelm, Dunlap, Robbins (1992) report that
these behavior problems decrease family quality of life. According to Cale, Carr, BlakeleySmith & Owen-DeSchryver (2009) problem behavior can inhibit children with autism from
completing common routines. Such common routines include (a) being able to transition
between settings or activities, (b) appropriately terminating a preferred activity (c) and being
presented with the presence of a feared stimulus. (Cale et al, 2009).
Secondary Responses of Autism Spectrum Disorder
25
Levy et al. (2009); & Granpeesheh, & Dixon (N.D.) describe the core symptoms of ASD
as being affected domains of socialization, communication problems, and behavior problems.
However, Granpeesheh, & Dixon (N.D.); & Jepson & Johnson (2007) state that although there
are diagnostic features of ASD, there are also secondary responses of the disorder. The authors,
Granpeesheh, & Dixon (N.D.); & Jepson & Johnson (2007), report that three of the most
common problems include increased immune dysfunction, inflammatory gastrointestinal
disorders, and nutritional deficiencies. Although there is yet to be conclusive evidence to
support a link between these secondary responses and ASD, it has become clear that children
with ASD might also be suffering from a variety of biomedical problems. (Granpeesheh &
Dixon, N.D.) In a conversation with autism researcher Dr. Amy Davis (personal
communication, 2009), it was stated that the behavior problems exhibited by children affected by
ASD come from the side effects of the secondary responses of ASD and not the symptoms
themselves. For example, a child who suffers from ASD and has inflammatory bowel disease
might be exhibiting severe behavior problems because of severe stomach pain, however, because
their communication skills lack appropriate development, the child is not able to communicate
properly to the parent. (A. Davis, personal communication, 2009)
Immune Dysfunction
According to (Sweeten, Bowyer, & Posey ,2003; Ashwood, Willis, & Van De
Water, 2006) an increased number of immune deficiencies have been reported in families with a
child diagnosed with autism. Ashwood et al. (2006) state that children with ASD are prone to
infection, chronic inflammation, and autoimmune reactions. They state that this immune
dysfunction can affect any organ in the body, but most commonly, the GI tract and the brain.
Comi, Zimmerman, & Frye (1999) support this claim by reporting that 46% of families in their
26
study who had a child with autism had two or more members of the family with autoimmune
disorders. Jepson & Johnson (2007) noted that although immune dysfunctions are present in
most children with ASD, they are not present in all.
According to Sweeten, Bowyer, Posey, Halberstadt, & McDougle (2003) the autoimmune
disorders that were most commonly coupled with autism were hypothyroidism, Hasimoto’s
thyroiditis, and rheumatic fever. In another study, Molly, Morrow, Meinzen-Derr, Dawson,
Bernier, Dunn, Hyman, McMahon, Goudie-Nice, Hepburn, Minshew, Rogers, Sigman, Spence,
Tager-Flusberg, Volkmar, & Lord, (2006) looked at the family history of autoimmune disorders
in families with a child diagnosed with ASD and found that 57% had a first or second degree
relative with an autoimmune disorder. The authors stated that there were a higher number of
autoimmune disorders in children who showed regression, and thyroid disease was the most
commonly associated autoimmune disorder. (Molly et al., 2006).
Campbell, Sutcliffe, Ebert, Militerni, Bravaccio, Trillo, Elia, Schneider, Melmed, Sacco,
Persico, & Levitt (2006) also found an association of immune dysfunction and children with
autism. The authors found that children with autism presented with a genetic variant of MET, a
cell receptor that is important for normal growth and maturation of the brain, for proper
regulation of the immune system, and for gastrointestinal repair. (Campbell et al., 2006).
Gastrointestinal Disorder
Levy & Hyman (2005) stated that some children with autism appear to have increased
frequency of gastrointestinal tract problems or inflammatory bowel diseases. Such problems
might include diarrhea, constipation, and gastro esophageal reflux. Although there are reports of
a link between ASD and increased gastrointestinal tract problems (Horvath, Papadimitriou, &
Rabsztyn, 1999; Horvath, & Perman, 2002) there is no epidemiological data, according to Kuddo
27
& Nelson (2003) to support this claim. However, a tertiary care clinic that cares for children
with ASD reported that 24% of the children seen had a history of at least one gastrointestinal
problem. (Levy & Hyman, 2005).
Valicenti-McDermott, McVicar, Rapin, Wershil, Cohen, & Shinnar (2006); Melmed,
Schneider, & Fabes (2000) stated that in a study conducted with both children with autism and
neurotypical children, 70% of the children with autism presented with gastrointestinal symptoms
(GI) and 27% of the neurotypical children presented with GI symptoms. According to Jepson &
Johnson (2007) constipation and diarrhea are very common in children diagnosed with autism.
In one study conducted in a gastroenterology referral center, 78% of the children presented with
diarrhea, 59% presented with abdominal pain, and 36% presented with constipation.
According to Jepson & Johnson, 2007 and A. Davis, personal communication, 2009,
some physicians believe the symptoms of GI issues are the result of behavior problems rather
than the cause of the behavior problems. However, in a conversation with Dr. Amy Davis
(personal communication, 2009) she stated that constipation, reflux, abdominal pain, and
diarrhea (or “leaky gut” syndrome) come mostly from food allergies, food sensitivities, or the
body not being able to properly use the nutrients from the food that is being eaten. Davis (2009)
stated that the behaviors that are exerted by children with autism most likely come from the
severe pain or irritability that the gastrointestinal disorders are causing.
Food Intolerances
Gluten, is a protein, according to Jepson & Johnson, 2007 and A. Davis, personal
conversation, 2009, processed from wheat, oats, rye, barley, spelt, and some other types of grain.
According to the authors, gluten presents a sensitivity in children with ASD because it is hard
(sometimes impossible) for them to digest. Casein, a protein that comes from cow’s milk,
28
presents another sensitivity in children with ASD. Sections of the proteins (peptides) in gluten,
along with casein, according to Jepson & Johnson, 2007; A. Davis, personal communication,
2009; Milward, Ferriter, Calver, & Connell-Jones, 2004, are similar in structure to opiates
(which are present in morphine and heroin) and can cause addictions to foods that contain gluten
and casein and trigger withdrawal when they are removed from the diet.
Horvath, & Perman (2002) reported that studies have been done regarding endoscopic
evaluations of the upper GI tract in children with autism. According to the authors, treating the
GI problems found in these evaluations often improves behavior problems in children with ASD.
According to Levy & Hyman (2005) if a food allergy is documented in a child with ASD
behavioral responses and non-behavioral responses such as irritability, food refusal, and
disturbances in sleep are also reported to be increased. Lucarelli, Frediani, Zingoni, Giardini, &
Quintieri (1995) found evidence of an elevated level of antibodies to casein in children
diagnosed with ASD. When casein was removed, the authors stated that the children
demonstrated an improvement in behavior. Lucarelli et al., 1995).
According to Mulloy, Lang, O’Rilley, Sigafoos, Lancioni, & Rispoli (2009) the existing
literature regarding special diets for children with autism is very limited. Of the 14 studies they
researched, they felt that few showed quality research. According to Mulloy et al. (2009) the
studies that showed improvement for children on the gluten free/casein free diet should be
discounted because they either do not include a control group, or include measurement
conditions subject to bias. As the authors noted, the literature is limited, which makes research
on special diets (part of biomedical treatment and healthy family functioning) that much more
important. (Mulloy et al., 2009).
29
Impact of Autism Spectrum Disorders on the Family
Quality of Life
According to Lee et al. (2007) research shows that families who have a child diagnosed
with ASD have reported a decreased quality of life than control families. The affected families
reported that they were significantly less likely to be able to attend religious services; that their
children are more likely to be absent from school which poses a problem for the parent, as they
must find someone to take care of the child during these absences otherwise be absent
themselves; and they are less likely to be involved in organized activities, individual, or as a
family. (Lee et al., 2007). Bouma & Schweitzer, 1990; Donenberg & Baker, 1993; Seltzer,
Shattuck, Abbeduto, & Greenberg, 2004, report that parents who have a child with special needs
have less time to meet their own needs because of the child-caring stress that occurs every day.
Stress on Mothers
Phetrasuwan & Miles (2008) stated that significant challenges are presented to parents,
particularly mothers (often the primary caregiver) when they are raising a child diagnosed with
ASD. According to Phetrasuwan & Miles (2008), when parenting a child with ASD, the highest
sources of stress were found to be the following:
Managing demanding behaviors and upset feelings, discipline, and managing
behavior in public places were the highest sources of overall parenting stress.
Symptom-related stressors that were most salient were the child’s emotional
responses, expressions of fear or nervousness, verbal communication issues, and
relating to people. (p. 162)
In studies conducted by Dunn, Burbine, Bowers, & Tantleff-Dunn, 2001; Tomanik,
Harris, & Hawkins, 2004, there is a relationship between parental stress and the behaviors
30
exerted by children with ASD. A relationship has also been found between the severity of
behavior problems in children with ASD and the level of parental stress. (Abbeduto, Seltzer,
Shattuck, Krauss, Orsmond, & Murphy, 2004; Baker et al., 2002; Perry, Harris, & Minnes, 2005.
According to a study conducted by Hoffman, Sweeney, Hodge, Lopez-Wagner, & Looney
(2009) mothers of children with autism presented with extremely higher levels of stress than the
control group. Mothers with a child with autism reported higher levels of stress on 6 of the 7
Parent Domain subscales when compared to the control group. The authors also reported that the
severity of the child’s symptoms were related to the mother’s stress level scores. (Hoffman et
al., 2009). Mothers in this study also reported that the more stressful and problematic their
child’s behavior was, the less closeness they felt towards the child. (Hoffman et al., 2009). The
study showed that it was the higher levels of problematic behavior in children with autism, and
not the level of autism itself that contributed to lower levels of closeness in the reports of
mothers of children with autism. (Hoffman et al., 2009).
Stress on the Family
According to Brobst, Clopton, & Hendrick (2009) stated that when parenting a child with
special needs, more time and effort must be provided by the parents which causes a great deal of
stress and strain on the couple. Although there is limited research regarding the specific impact
parenting a child with ASD has on the couple, there is an adequate and increasing amount of
research to support the idea that the behaviors exerted by children with ASD can create a very
challenging environment which affects the family. (Brobst et al., 2009). When comparing
couples with a child diagnosed with ASD and a control group comprised of couples who do not
have a child diagnosed with ASD, it was found that more parental stress and trouble with
behavior problems existed in couples who had a child diagnosed with ASD. The parents of
31
children with ASD also reported lower relationship satisfaction and overall social support.
However, the study did not find significant differences in perceived spousal support,
commitment to each other, or respect for each other. (Brobst et al., 2009)
According to Blacher & McIntyre (2006) higher levels of stress are reported in parents of
children with autism than in any other type of disability. In a research study conducted by
Osborne, & Reed (2009), it was found that parenting stress is associated with the behavior
problems exerted by children with ASD and not the severity of the child’s ASD, except in very
young children. The authors also stated that the parenting stress as a result of behavior problems
will in turn affect future behavior problems. (Osborne & Reed, 2009). Donovan (1988) stated,
in his research study, that family problems exist more in families of children with autism than in
other families with children with cognitive disabilities.
One specific challenge that affects families, who have a child with autism, is the financial
burden or responsibility that families with normal developing children do not have to face.
According to Brobst et al., 2009 and Parish, Seltzer, Greenberg, & Floyd, 2004, raising a child
with autism has been associated with increased medical costs and higher rates of job loss than
families who do not have a child with children with autism. According to Benson (2006)
parental depression, which can affect the entire family, was frequently reported in families with a
child diagnosed with ASD. (Lee et al., 2009). Brobst et al. (2009) stated that additional research
is needed regarding the affects (including individual, dyadic, and family systems) on parental
relationships when raising a child with ASD.
Psychological Foundations of Autism Spectrum Disorder
Individuality and togetherness, according to Kerr & Bowen (1988) are the two
counterbalancing life forces that are reflected from the operation of the family’s emotional
32
system. This system focuses on the development of the physical, emotional, and social
dysfunctions that bear a significant relationship to individuals and families, and how these family
systems respond and make adjustments. Autism Spectrum Disorder (ASD) is an example of a
dysfunction that can bear a significant impact on a family system. (Brobst et al., 2009).
According to Brobst et al. (2009), a great deal of stress and strain can be placed on a couple who
are parenting a child with special needs, this, according to the authors, is due to the fact that the
children with special needs require a lot more time and attention than normal developing
children.
Bowen (1985) discusses the family systems theory as a triangle, or a three-person system.
His best example of the family system or triangle system is the father-mother-child triangle.
Bowen (1985) discussed that the triangle functions in different periods, periods of calm, periods
of stress, and periods of tension. In all of these periods, the triangle follows a pattern, and
although the pattern can often change, one parent is passive, distant, or weak and leaves the
conflict between the other parent and the child. ( Bowen, 1985). The child is the weaker of the
two and often loses the battle and therefore comes to expect to lose. If the passive parent ever
decides to attack or challenge the aggressive parent the child will eventually learn how to take
the outside position and play the parents against each other. (Bowen, 1985). According to
Phetrasuwan & Miles (2008) parents, but mothers in particular, since they are often the primary
caregiver, are often presented with significant challenges, such as behavior problems, etc, that
cause varying degree of stress when raising a child with ASD. This type of stress, (Phetrasuwan
& Miles (2008) can lead to passive or aggressive attack on the child or the other parent, causing
dysfunction in the family system. (Bowen, 1985). According to Bartle-Haring & Lal, 2010 and
Ng & Smith, 2010, Bowen theory suggests that when the emotional system is in turmoil, it is still
33
possible to maintain emotional objectivity and keep the family in the system, this is what Bowen
(1985) refers to as a differentiated self.
According to The Bowen Center (2009) the family systems theory is a human behavior
theory that views the family as an emotional unit. It uses systems thinking to describe the
complex interactions within the unit. It is stated by The Bowen Center (2009) that if one person
in the family changes their functioning than it can be predicted that there will be reciprocal
changes in the functioning of others in the family. Bowen’s family systems theory is based on
the idea that the emotional system will affect most all human activity and it is the principal
driving force in the development of clinical problems. (The Bowen Center, 2009). Brobst et al.
(2009). Reported that in families with a child with ASD, there are often outside factors that can
cause stress and strain on one or both of the parents. According to Brobst et al., 2009 and Parish
et al., 2004, increased medical costs and higher rates of job loss have been associated with
raising a child with autism than in families who do not have a child with autism. This type of
outside stress is an example of how family functioning can change, especially if the parents
disagree about how to address the outside factors or issues. (Bowen, 1985).
Family Functioning and FACES IV
FACES IV stands for family adaptability and cohesion evaluation scales and consists of
six family scales, according to Olson et al. (2004). These scales assess the dimensions of family
cohesion and family flexibility and include two balanced scales and four unbalanced scales.
According to Olson et al. (2004) there are 62 items on the assessment and address cohesion,
flexibility, communication, and satisfaction. FACES IV is the newest version of a family self34
report assessment and it is designed to evaluate family cohesion and family flexibility. (Olson et
al., 2004). According to Kouneski (2002) there have been more than 1,200 articles and
dissertations published which used some version of FACES or the Circumplex Model of Marital
and Family Systems.
Multiple studies regarding aspects of family functioning have been conducted (Barber &
Buehler, 1996, and Werner, Green, Greenberg, Browne & McKenna, 2001) but the importance
of cohesion and flexibility in the family system has remained constant in all of them. (Olson,
2010).
Cohesion, according to Olsen (2010) is defined as “the emotional bonding that family
members have toward one another” (p. 2). Olson (2010) defines family flexibility as “the quality
and expression of leadership and organization, role relationship, and relationship rules and
negotiations” (p. 2). Olsen (2010) stated that when using the Clinical Rating Scale (CRS) which
is based on the Circumplex Model, balanced levels of cohesion and flexibility are related to
healthy families and unbalanced levels are more characteristic of unhealthy families.
According to Olson et al. (2004) the reliabilities of the six FACES IV scales are as
follows: Disengaged = .87, enmeshed = .77, Rigid = .83, Chaotic = .85, Balanced Cohesion =
.89, Balanced Flexibility = .80, and Alpha reliability analysis was also run for the validation
scales and ranged from .91 to .93. In another study conducted by Olson (2010) the six scales
created for FACES IV were proven to be reliable and valid based on reports from the American
Association for Marriage and Family Therapy.
Biomedical Treatment and Autism Spectrum Disorder
The research on biomedical treatment is somewhat limited as it is not a widely accepted
form of treatment for children with autism. (Jepson & Johnson, 2007). What the data does show
35
is that biomedical treatment, or the multi-tiered treatment approach, according to Jepson &
Johnson (2007) is a type of treatment that is working for many children with autism. This type
of treatment aims to replace what the child is missing, remove what is causing the child harm,
and break the inflammatory cycle. (Jepson & Johnson, 2007). By doing these things, children
with autism can begin to heal and recover, and families can begin to see changes in behavior,
health, and eventually establish healthier functioning for the entire family. (Jepson & Johnson,
2007). Wong & Smith (2006) also discuss the use of biomedical treatment for children with
ASD. The authors define biomedical or complementary and alternative medicine (CAM) as a
group of diverse medical systems, practices, or products that are not considered part of
conventional medicine.
In a study conducted by Harrington et al. (2006) 87% of the participating parents
reported to using at least one biomedical or drug treatment for their child’s autism. The authors
noted that their survey did report a much greater use of biomedical treatments than previously
reported (Levy, Mandell, Merhar, Ittenbach, & Pinto-Martin, 2003; Nickle, 1996) for children
with autism, and they attribute this difference to differences in survey techniques or differences
in demographics of participants. (Harrington et al., 2006). In other survey’s it has been shown
that 50-70% of children with autism are using biomedical treatment. (Wong & Smith, 2006;
Hansen et al., 2007).
According to the American Academy of Pediatrics (2010) physicians treating children
with ASD should be aware that there is a great possibility that these children are undergoing
biomedical treatment and therefore should become knowledgeable about biomedical treatment,
current and past use, in order to provide balanced information and advice to any parents seeking
treatment options. The American Academy of Pediatrics (2010) also discourages physicians
36
from being dismissive of biomedical treatment or showing a lack of sensitivity or concern in
their conversations. It is recommended that physicians continue to work with families who have
a child with ASD and are seeking biomedical treatment even if there is a disagreement about
treatment choices, and continue to emphasize the scientific merits of traditional therapies.
(American Academy of Pediatrics, 2010).
Supplements Used For Children with Autism Spectrum Disorder
According to Levy & Hyman (2005) dietary supplements include vitamins, minerals, and
other substances that are “natural” and are available without a prescription. Although evidence
for deficiencies of dietary nutrition has not been scientifically proven, according to Hyman &
Levy (2000), research shows that supplements are used in children with ASD for the
enhancement of neurotransmitter function by increasing the availability of certain substances or
cofactors. Another reason for dietary supplements, according to Pfeiffer, Norton, & Nelson
(1995) is compensate for any biochemical deficiencies in children with ASD.
In a study
conducted by Harrington et al., (2006) out of 62 parents reporting the use of biomedical
treatment, more than half of the parents reported the use of dietary supplements. In another
study, conducted by Hanson et al., (2007) out of 112 participants, 33 parents were giving dietary
supplements for their child with ASD.
According to Levy & Hyman (2005) in a survey conducted by the Autism Research
Institute, the most common dietary supplements being used were magnesium, vitamin B6,
dimethyglycine (DMG), and vitamin C. In a conversation with Dr. A. Davis (personal
communication, 2009) she stated that there are two main importance’s of dietary supplements,
the first being because some children with ASD do not properly break down and digest the foods
they eat, they lack many nutrients that their body needs for optimal health. The second reason is
37
that a lot of children with ASD are on special diets and they do not take in proper amounts of
specific nutrients so it is important to supplement them. (A. Davis, personal communication,
2009). Of course more research is warranted on nutritional supplements, but in the children seen
in the clinic, vast majorities are nutritionally deprived, and should be treated with basic dietary
supplements to include digestive enzymes, probiotics, multivitamins, and other basic
supplements. (A. Davis, personal communication, 2009). Whether autism is the cause or the
result of dietary deficiencies, Jepson & Johnson (2007) explain that the most important strategy
in treatment should be re-supplying the body with the nutrients that are essential for the child’s
body to perform on a more normal basis.
Antifungals and Probiotics Used For Children with Autism Spectrum Disorder
Probiotics, according to Kaila, Isolauri, Soppi, Virtanen, Laine, & Arvilommi, (1992);
Itoh, Fujimoto, Kawai, Toba, & Saito (1995) contain an ingredient known as Lactobacilli and aid
in the production of molecules that fight pathogenic bacteria, they also lower the pH of the stool,
and aid in the formation of oxidants that keep harmful bacteria from colonizing. Saccharomyces
boulardii is another “good yeast” that encourages the growth of “good bacteria” while
discouraging the growth of pathogenic bacteria and yeast. (Levy, 1998; Haskey, & Dahl, 2006;
Buts & De Keyser, 2006). In other studies, probiotics have been used in children to shorten the
lifespan of diarrhea, eliminate Clostridium difficile infections, prevent diarrhea, and shorten the
spreading of rotavirus. (Isolauri, Juntunen, Rautanen, Sillanaukee, & Koviula, 1991; Biller,
Katz, Flores, Buie, & Gorbach, 1995; Saavedra, Bauman, Perman, & Yolken, 1994).
According to Jepson & Johnson (2007) there is currently a lack of scientific research
regarding the use of antifungals for ASD. However, the authors suggest that antifungals are
most often put at the top of the treatment plan by biomedical doctors for children with ASD
38
because they often bring about behavioral improvement. (Jepson & Johnson, 2007). The
question that biomedical doctors have yet to answer (because there is not enough research
regarding the topic) is whether or not these antifungals work on behavior problems by killing the
yeast itself, decreasing the levels of yeast-produced neurotoxins, or because they affect the
metabolic pathway directly. (Jepson & Johnson, 2007). Jepson & Johnson (2007) reports that
when antifungals are used, behavior often gets worse (for approximately 1 week) followed by a
significant improvement, because of a “die-off” effect as the yeast is killed. According to Levy
& Hyman (2005) there aren’t any known negative side effects to using probiotics agents, but the
chronic use of antifungals requires monitoring because they can cause liver toxicity and
exfoliative dermatitis.
Special Diet Used For Children with Autism Spectrum Disorder
According to Adams, Edelson, Grandin, Rimland (2004) the gluten free/casein free diet is
one of the most common diets used for children with autism. It was in 1980 that an association
between a diet containing gluten and casein and autistic behavior was found. (Ashkenazi, Levin,
& Krasilowsky, 1980). Levy & Hyman (2005) state the popularity of this diet is frequently used
because it is presumed to be a healthy, noninvasive approach and is presented to parents in an
optimistic way which promises rapid results. The rationale behind the gluten free/casein free
diet is based on the assumption that children with ASD experience “leaky gut” syndrome, which
is described as the inability to break down the proteins found in both gluten and casein which
results in the absorption of peptide fragments. (Gilberg, 1995, and Shattock & Whitely, 2004).
The reaction, according to Gilberg, 1995; Shattock & Whitely, 2004, results in an opioid effect.
Although there are a number of studies regarding positive effects of the gluten free/casein free
39
diet used in children with ASD, various methodological flaws prohibit them from being
perceived as definitive. (Christison, & Ivany, 2006).
Jepson & Johnson (2007) reported that in several research trials that incorporated a strict
gluten free/casein free diet for several months, at minimum, immediate results were received in
the areas of eye contact, behaviors, sleep problems, bowel problems, communication issues, and
attention. The authors report that removing gluten and casein form the diets of children with
ASD can result in a short lived behavior regression, but should be immediately followed by a
significant improvement in behavior problems. (Jepson & Johnson, 2007). Jepson & Johnson
(2007) also stated that removing chemicals and artificial colors from the diet can improve
nutrition and behavior in children with ASD. Another popular diet used for children with ASD
is called the Specific Carbohydrate Diet. (Gottschall, 1994). The author stated that yeast and
bacteria can cause gastrointestinal inflammation and problems with absorption because of the
overproduction of mucus. (Gottschall, 1994). When complex carbohydrates are removed from
the diet, the yeast and bacteria living in the system are starved, causing them to “die off” and the
gut will heal. (Gottschall, 1994). According to Levy & Hyman (2005) more evidence on diet
based treatments is warranted because as with any intervention, families who don’t utilize special
diets incur feelings of guilt when they learn that other families have tried special diets and
achieved results.
Biomedical Treatment and Family Functioning
Jepson & Johnson (2007) stated that the treatment of ASD consists of three components;
“replace what the child is missing, remove what is causing harm, and break the inflammatory
cycle” (p. 183). In a conversation with Dr. A. Davis (personal communication, 2009) she
40
mentioned that every child is different, therefore treatment must be altered to their own specific
needs. Although a basic plan is followed, most include discovery of food sensitivities, addition
of basic dietary supplements, antifungals and probiotics if yeast and bacteria is found in the gut,
and a special food diet if deemed necessary. According to Jepson & Johsnon, 2007; A. Davis,
personal communication, 2009, reports from parent’s state that changing the child’s diet is often
the most difficult of all, but often shows the most immediate improvements in behavior. When
parents see improvements, it encourages them to continue with other changes. (Jepson, &
Johnson, 2007; A. Davis, personal communication, 2009).
According to Baker et al., children with developmental disabilities exhibit
behavior problems more often than typical developing children. In a conversation with Dr. A.
Davis (personal communication, 2009) she stated that the behavior problems exerted by children
with ASD most often come from the side effects of secondary responses of the disorder. If you
remove the sensitivities or other issues, the child’s behavior will improve. (A. Davis, personal
communication, 2009; Jepson & Johnson, 2007). For example, Dr. Amy Davis (personal
communication, 2009) stated that in her research, children who are suffering from GI issues and
food sensitivities have behavior problems because they have no other way to communicate their
feelings of discomfort, but if you remove the GI issues (with probiotics and antifungals) and
remove foods such as gluten and casein from the diet that trigger sensitivities (Lucarelli et al.,
1995; Jepson & Johnson, 2007) you will see a change in behavior because they will feel better
and most often, begin to express better communication and social skills. (A. Davis, personal
communication, 2009).
As stated by the American Psychological Association (2000) children with ASD have
impairment in communication skills which inhibits their ability to answer or even understand
41
simple directions and questions. According to Johnson & Jepson (2007); & A. Davis (personal
communication, 2009) using biomedical treatment can improve communication and social skills.
According to Brobst et al., 2009; & Hoffman et al., 2009, the behaviors exerted by children with
ASD create a challenging environment that affects the family, both mother and father. Once
again, as stated by Jepson & Johnson, 2007; & A. Davis, personal communication, 2009, treating
the side effects of secondary responses of ASD with biomedical treatment can alleviate the
behaviors that affect family functioning in a negative way.
Summary
To briefly review, chapter two expanded upon the current and past literature regarding
the topics of research in the current study, autism spectrum disorders, biomedical treatment, and
healthy family functioning, in an attempt to assist in the understanding of their theoretical
development and concept. The literature review also provided a description of Bowen’s Family
Systems Theory, and the FACES IV assessment, which will be used to answer the research
questions in the current study. In the next chapter, a description of how the study was conducted
can be found.
42
CHAPTER 3. METHODOLGOY
Introduction
The purpose of this chapter is to explain the methodology that will be used to answer the
research questions in this study. The current chapter begins by discussing the purpose of the
study, the rationale, and research design. Discussed next will be the target population and
participant selection, followed by the data collection and procedures explaining the instruments
and statistical analyses that will be used. The research questions and hypotheses will be
discussed next and data analysis will follow. The final portion of this chapter will discuss the
expected findings of this study.
Purpose of the Study
Families who have a child diagnosed with autism spectrum disorder face various
challenges in their lives. (Kanne, 2006; Levy & Hyman, 2005; Jepson & Johnson, 2007). This
Ex Post Facto study will attempt to increase the body of knowledge available to researchers,
psychologists, and families, by attempting to determine whether families using biomedical
treatment will have healthier family functioning scores according to the FACES IV assessment.
FACES IV, according to Olson et al. (2004) is a 62 item assessment that addresses
cohesion, flexibility, communication, and satisfaction. This assessment scale stands for family
adaptability and cohesion evaluation scales and will be used to determine the level of healthy
family functioning for each participant. There are two balanced scales and four unbalanced
scales in the FACES IV assessment and the published rates of validity and reliability are as
follows: Disengaged = .87, enmeshed = .77, Rigid = .83, Chaotic = .85, Balanced Cohesion =
43
.89, Balanced Flexibility = .80, and Alpha reliability analysis was also run for the validation
scales and ranged from .91 to .93.
The participants of the FACES IV assessment will be divided into two groups; mothers of
a child diagnosed with autism and have received biomedical treatment, and mothers of a child
who has been diagnosed with autism and has not received biomedical treatment.
The scores that are received through the FACES IV assessments will be used to
determine if the families using biomedical treatment have healthier family functioning. These
scores might also lead to further causation studies for autism, biomedical treatment, and healthy
family functioning.
According to Harrington, Patrick, Edwards, & Brand (2006) some of the most popular
forms of biomedical or alternative treatments for Autistic Spectrum Disorder (ASD) include
dietary restrictions, dietary supplements, antifungals, chelation therapy, homeopathy, sensory
integration, secretin, and animal therapy. These different treatments can be used separately or
combined. Although the authors showed evidence of such treatment being used by many parents
of children with ASD, the authors discussed the treatment as being controversial and potentially
harmful. (Harrington et al, 2006). The authors suggested that practitioners use a non-judgmental
tone, and inquire about parental beliefs and current treatments in order to establish a more
trusting relationship with parents. However, like most articles on ASD treatments, there is no
mention of the psychological impact ASD has on both the parents and the child. Harrington et al
(2006) discuss the use of biomedical treatment; but they do not discuss how many parents
achieved better behavior from their child after implementing various treatments.
Rationale
44
This Ex Post Facto design will have an independent variable, biomedical treatment
(variable x) and a dependent variable, level of healthy family functioning (variable y). Using an
Ex Post Facto design, according to Leedy & Ormrod (2005) allows the researcher to make a
generalization about the population being studied, this factor is important when limiting the
study to parents of children with autism.
Research Design
The purpose of this quantitative study is to determine if there is a relationship between
biomedical treatment and healthy family functioning scores as determined by FACES IV. In
order to determine if a relationship does in fact exist between biomedical treatment higher family
functioning scores, an Ex Post Facto research design will be used in this study.
A 2 group Ex Post Facto design will be used. According to Leedy & Ormrod (2005) Ex
Post Facto refers to something “after the fact”. Leedy & Ormrod (2005) state that the intent of
Ex Post Facto designs is to provide a different means in which a researcher can investigate how
the dependent variable can be affected by a specific independent variable(s).
Target Population and Participant Selection
The population of interest for this study will consist of mothers who have a child that has
been diagnosed with autism spectrum disorder. The child must be diagnosed by a doctor and the
mother can be married, living with a mate, separated, or divorced. The child with autism can be
of any age, as can the mothers. These children are not required to all have the same symptoms of
autism, and the mothers are not required to experience all the same day to day issues. Sampling,
according to Leedy & Ormrod (2005) is defined as a subset or part of population that will be
45
studied when the entire population of interest cannot be studied. The entities that are selected are
called the sample, and the way in which they are selected is called sampling. (Leedy & Ormrod,
2005). A website, which will include information regarding the current study, will be created
and will include a hyperlink that will take the participants directly to the survey, hosted by
Survey Monkey. The survey on Survey Monkey will include a set of background questions for
the mothers as well as the FACES IV assessment. The link to this website
(www.autismdeal.com) will be posted online by Age of Autism. There will also be flyers and an
information page placed in Dr. Amy Davis’s office, Crossing Back to Health, a doctor’s office
that treats patients with autism.
As this study uses a convenience sample, the sample will include any mother who has a
child who has been diagnosed with Autism Spectrum Disorder. There is no exclusion to this
study. All regions/areas of the United States will be included in the in this online study.
The goal sample size for this study is 200 participants. However, if snowball sampling
plays a part the number of participants could increase by any number of volunteers. The sample
size was calculated by looking at past studies that have been done on Autism Spectrum Disorders
and Family Functioning Studies. Fiske, K.E. (2009). discussed using a sample size of 106 in the
cross-sectional study of patterns of renewed stress among parents who have a child diagnosed
with autism. According to the author, this was an adequate sample size to show that mothers and
fathers who have a child with autism have different levels of stress, depending on their
experiences with the child. (Fiske, K.E., 2009).
In another study, Berry, L.N. (2009) reported that 189 children participated in a study
regarding early treatments for optimal outcomes in children diagnosed with autism spectrum
disorders. Neither of these studies used snowball sampling in order to gain participants but both
46
were valid and reliable studies. If the current study has close to 200 participants then it will also
be valid and reliable.
Procedure
Preparatory Collection: A website will be created (www.autismdeal.com) and will
include information regarding the study for Mothers of children who have been diagnosed with
Autism Spectrum Disorder. The website will post information about the study, instruction,
information about the researcher, information about confidentiality, and a hyperlink to the survey
itself which is hosted by Survey Monkey.
Survey Monkey will be used as the host for the survey itself. The participants will read a
consent form and click “next” if they agree to participate in the study. At that time, the survey
will begin. The results from each survey will be kept on a database that only the researcher will
have access to.
Mothers of children diagnosed with autism will learn about the study via Age of Autism,
or Dr. Amy Davis, and she will volunteer to complete a survey through Survey Monkey. The
survey will ask 8 background questions about the child who has been diagnosed and ask for his
or her permission to participate in the assessment. The FACES IV assessment package
(purchased by researcher) includes an excel spreadsheet for storing and scoring the FACES IV
profile. This spreadsheet will make it possible to track the participants answers even though he
or she will not give names in order to remain anonymous. The assessment itself, is a 62 item
assessment that measures flexibility, adaptability, cohesion, communication and satisfaction.
Participants will answer questions in a “rating” form and his or her answers will be scored.
47
Instruments: The testing scale being used, FACES IV, has published levels of
reliability and validity. According to Olson, Gorall & Tiesel (2004) the reliabilities of the six
FACES IV scales are as follows: Disengaged = .87, enmeshed = .77, Rigid = .83, Chaotic = .85,
Balanced Cohesion = .89, Balanced Flexibility = .80, and Alpha reliability analysis was also run
for the validation scales and ranged from .91 to .93. By publishing these numbers, participants
will know beforehand how reliable and valid the assessment being used is. Using SPSS will help
to alleviate any miscalculations when analyzing and evaluating the data.
Post Data Collection: After the participants have completed the survey the results will
be stored in the database provided by Survey Monkey and the FACES IV spreadsheet. Once the
researcher has received the required or an adequate number or survey’s they will be exported to
SPSS 16.0 for further evaluation
Measures
Participants will be completing the FACES IV assessment. According to Olson, Gorall,
& Tiesel (2004) FACES IV will evaluate communication styles, family interactions, and
flexibility. The evaluations can be hand scored and imputed into SPSS or they can be scored
online and imputed into SPSS.
The scores that are received through the FACES IV assessments will help to determine
whether or not biomedical treatment for autism has an effect on healthy family functioning. If
the hypothesis is accepted, the information may be very beneficial to psychologists and medical
professional who are dealing and treating families who have a child diagnosed with autism
spectrum disorder. The results of this assessment might also show how the family systems
theory can be impacted by a diagnosis of autism spectrum disorder.
48
The testing scale being used, FACES IV, has published levels of reliability and validity.
According to Olson, Gorall & Tiesel (2004) the reliabilities of the six FACES IV scales are as
follows: Disengaged = .87, enmeshed = .77, Rigid = .83, Chaotic = .85, Balanced Cohesion =
.89, Balanced Flexibility = .80, and Alpha reliability analysis was also run for the validation
scales and ranged from .91 to .93. By publishing these numbers, my participants will know
beforehand how reliable and valid the assessment being used is. SPSS will also be used in order
to help alleviate any miscalculations when transferring numbers and scores and doing the t-test
graph.
Research Questions and Hypotheses
RQ1:
Is there a difference in the scores of healthy family functioning between families with a child
diagnosed with Autism Spectrum Disorder (ASD) who have received biomedical treatment and
families who have not received biomedical treatment according to the scores on the FACES IV
assessment?
According to Rao & Beidel (2009) the behavioral problems exerted by children with
ASD often cause elevated levels of stress, depression, anxiety and emotional exhaustion for the
entire family. These problems as stated by Rao & Beidel (2009) also affect the family system in
other ways.
For example, parents of ASD children reported having little or no time for family
activities such as outings or vacations, having no room for spontaneity, and reported having
career restrictions and marital stress. (Rao & Beidel, 2009). Biomedical treatment, according to
Jepson & Johnson, 2007; Davis, 2009, can alleviate the symptoms of the secondary responses of
ASD that most often cause the behavior problems exerted by children with ASD. Since behavior
49
problems in children with ASD affect the family system and family functioning, it is assumed in
this study, that using biomedical treatment to alleviate the behavior problems will in turn
encourage better family functioning and a healthier family system.
Hypothesis: Mothers with a child diagnosed with Autism Spectrum Disorder and have received
biomedical treatment will have a higher rate of healthy family functioning as measured by
FACES IV than mothers whose child has not received biomedical treatment.
Null Hypothesis: Mothers with a child diagnosed with Autism Spectrum Disorder and have
received biomedical treatment will not have a higher rate of healthy family functioning as
measured by FACES IV than mothers whose child has not received biomedical treatment.
RQ1a. Are families who use biomedical treatment more cohesive according to the scores on
the FACES IV assessment?
Hypothesis: Families who use biomedical treatment will be more cohesive according to the
scores on the FACES IV assessment.
Null Hypothesis: Families who use biomedical treatment will not be more cohesive according to
the scores on the FACES IV assessment.
RQ1b: Are families who use biomedical treatment more flexible according to the scores on the
FACES IV assessment?
Hypothesis: Families who use biomedical treatment will be more flexible according to the scores
on the FACES IV assessment.
Null Hypothesis: Families who use biomedical treatment will not be more flexible according to
the scores on the FACES IV assessment.
50
RQ1c. Do families who use biomedical treatment have better communication skills according to
the scores on the FACES IV assessment?
Hypothesis: Families who use biomedical treatment will have better communication according
to the scores on the FACES IV assessment.
Null Hypothesis: Families who use biomedical treatment will not have better communication
according to the scores on the FACES IV assessment.
RQ1d. Are families who use biomedical treatment more satisfied according to the scores on the
FACES IV assessment?
Hypothesis: Families who use biomedical treatment will be more satisfied according to the
scores on the FACES IV assessment.
Null Hypothesis: Families who use biomedical treatment will not be more satisfied according to
the scores on the FACES IV assessment.
Data Analysis
T-tests, according to Leedy & Ormrod (2005) are used when the researcher wants to
determine whether or not there is a statistically significant difference between two means. In this
study, the first mean would include levels of family functioning in families whose children have
not received biomedical treatment for their autism, and the second mean would include levels of
family functioning in families of children who have received biomedical treatment for their
autism.
The information used in the t-test will come from the results of the FACES IV
assessment the participants will be completing. According to Olson, Gorall, & Tiesel (2004)
FACES IV will evaluate communication styles, family interactions, and flexibility. The
51
evaluations can be hand scored and imputed into SPSS or they can be scored online and imputed
into SPSS.
The scores that are received through the FACES IV assessments will help determine
whether or not biomedical treatment for autism has an effect on healthy family functioning,
cohesion, flexibility, communication, and satisfaction. If the hypothesizes are accepted, the
information may be very beneficial to psychologists and medical professional who are dealing
and treating families who have a child diagnosed with autism spectrum disorder. The results of
this assessment might also show how the family systems theory can be impacted by a diagnosis
of autism spectrum disorder.
Expected Findings
In general, it is expected that families who have used biomedical treatment for their child
with ASD will have a higher mean of family function according to FACES IV than families who
have not used biomedical treatment for their child with ASD. That is, biomedical treatment is
expected to minimize behavior problems in children with ASD and therefore increase the rate of
healthy family functioning according to FACES IV.
52
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Personal Communication
Davis, Amy. (2009).
61
APPENDIX A. PARENT PARTICIPATION FLYER DISTRIBUTED AT SITE
10/10/2010
Dear Parent:
I am a doctoral student working under the direction of Professor Linda Reed in the School of
Psychology at Capella University. I am conducting a research study, titled Autism Spectrum
Disorder: The Relationship Between Biomedical Treatment and Healthy Family Functioning, in
an effort to determine whether or not biomedical treatment used in children diagnosed with
Autism Spectrum Disorder can create a higher rate of healthy family living. I invite you to
participate in this study. It will involve answering ten background questions and 62 questions
regarding the FACES IV survey about your family. FACES IV is an assessment scale that
measures family adaptability, cohesion, communication and satisfaction. These questions are
available through the website www.autismdeal.com. Answering these questions should take no
more than 20 minutes. Your participation in this study is completely voluntary, and you can
chose not to participate. The results of this research study will be published but your child’s
name and your name will not be included or requested anywhere in this study or survey.
Please copy this link into your internet browser
http://www.autismdeal.com
This survey does not provide a direct benefit for you, but your participation will hopefully result
in increased education of how biomedical treatment might increase the rate of healthy family
functioning.
If you have any questions concerning this research study or your participation in this study,
please call me at 843-377-6837 or email me at jreneej1@hotmail.com or Dr. Linda Reed at 937550-4269, Linda.Reed@capella.edu.
Sincerely,
Jill Tschikof
If you have any questions about your rights as a research participant or any concerns about the
research process, or if you’d like to discuss an unanticipated problem related to the research,
please contact the Capella Human Research Protections Office at: 1-888-227-3552, extension
4716. Your identity, questions, and concerns will be kept confidential.
62
APPENDIX B. PROCEDURE AND INFORMATION FOR OFFICE STAFF
10/10/2010
I am a doctoral student under the direction of Professor Linda Reed in the School of Psychology at
Capella University. I am conducting a research study, titled Autism Spectrum Disorder: The
Relationship Between Biomedical Treatment and Healthy Family Functioning, to determine whether or
not biomedical treatment used in children diagnosed with Autism Spectrum Disorder can create a higher
rate of healthy family living. I invite you to participate in this study. I am inviting mothers with a child
diagnosed with Autism Spectrum Disorder to participate in this study, which will involve answering 10
background questions and 62 questions regarding the FACES IV survey about their family. FACES IV is
an assessment scale that measures family adaptability, cohesion, communication and satisfaction. These
questions are available through the website www.autismdeal.com. Answering these questions should take
no more than 20 minutes.
Parent participation in this study is voluntary, they can choose not to participate. The results of this
research study will be publish, but the mother and child’s name will not be known in the survey and will
not be used for any part of the research.
Please place my business cards and flyers in an accessible place in your office. If mothers ask about the
survey please tell them that they can find more information online at the following website:
http://www.autismdeal.com
This survey does not provide a direct benefit for you or the participants, but your participation will
hopefully result in increased education of how biomedical treatment might increase the rate of healthy
family functioning.
If you have any questions concerning this research study or your participation in this study, please call me
at 843-377-6837 or email me at jreneej1@hotmail.com or Dr. Linda Reed at 937-550-4269,
Linda.Reed@capella.edu.
Sincerely,
Jill Tschikof
If you have any questions about your rights as a research participant or any concerns about the research
process, or if you’d like to discuss an unanticipated problem related to the research, please contact the
Capella Human Research Protections Office at: 1-888-227-3552, extension 4716. Your identity,
questions, and concerns will be kept confidential.
63
APPENDIX C. SURVEY FOR MOTHERS TO ANSWER
Capella University
225 South 6th Street
Minneapolis, MN 55402
1. How old is your child?
a. 0-3 b. 4-6 c. 7-10 d. 11-14
2. What is your child’s diagnosis?
a.
Autistic Disorder
b. Asperger’s Disorder
e. 15-18
c. Pervasive Developmental Disorder- Not Otherwise Specified
3. How long has it been since your child’s diagnosis?
a.
0-2 years b. 3-5 years c. over 5 years
4. What type of doctor diagnosed your child?
a.
Neurologist
b. Developmental Pediatrician
c. Child Psychologist
d. Team of doctors
e. Other
5. Are you familiar with Biomedical Treatment?
a. Yes b. No
6. Have you used any of the following forms of biomedical treatment for your child?
a. Special Diet b. Supplements c. Anitfungals
7. Are you still using any of the following forms of biomedical treatment for your child?
a. Special Diet b. Supplements c. Anitfungals
8. Are YOU currently seeking any form of marriage, family, or individual counseling therapy?
a. Yes b. No
9. What is your current marital status?
a. Married b. Separated c. Divorced
10. What is you annual household income?
a. 0-24,999 b. 25,000-49,999 c. 50,000-74,999 d. 75,000-99,999 e. 100,000
and over
64
APPENDIX D. PROCEDURE AND INFORMATION FOR WEBSITES
10/10/2010
I am a doctoral student under the direction of Professor Linda Reed in the School of Psychology
at Capella University. I am conducting a research study, titled Autism Spectrum Disorder: The
Relationship Between Biomedical Treatment and Healthy Family Functioning, to determine
whether or not biomedical treatment used in children diagnosed with Autism Spectrum Disorder
can create a higher rate of healthy family living. I invite you to participate in this study. I am
inviting mothers with a child diagnosed with Autism Spectrum Disorder to participate in this
study, which will involve answering 10 background questions and 62 questions regarding the
FACES IV survey about their family. FACES IV is an assessment scale that measures family
adaptability, cohesion, communication and satisfaction. These questions are available through
the website www.autismdeal.com. Answering these questions should take no more than 20
minutes.
Parent participation in this study is voluntary, they can choose not to participate. The results of
this research study will be publish, but the mother and child’s name will not be known in the
survey and will not be used for any part of the research.
Please place the following link to my study on your website:
http://www.autismdeal.com
This survey does not provide a direct benefit for you or the participants, but your participation
will hopefully result in increased education of how biomedical treatment might increase the rate
of healthy family functioning.
If you have any questions concerning this research study or your participation in this study,
please call me at 843-377-6837 or email me at jreneej1@hotmail.com or Dr. Linda Reed at 937550-4269, Linda.Reed@capella.edu.
Sincerely,
Jill Tschikof
If you have any questions about your rights as a research participant or any concerns about the
research process, or if you’d like to discuss an unanticipated problem related to the research,
please contact the Capella Human Research Protections Office at: 1-888-227-3552, extension
4716. Your identity, questions, and concerns will be kept confidential.
65
APPENDIX E. FLYER
www.autismdeal.com
I am a doctoral student working under the direction of Professor Linda Reed in the School of
Psychology at Capella University. I am conducting a research study, titled Autism Spectrum
Disorder: The Relationship Between Biomedical Treatment and Healthy Family Functioning, in
an effort to determine whether or not biomedical treatment used in children diagnosed with
Autism Spectrum Disorder can create a higher rate of healthy family living. I invite you to
participate in this study. It will involve answering ten background questions and 62 questions
regarding the FACES IV survey about your family. FACES IV is an assessment scale that
measures family adaptability, cohesion, communication and satisfaction. These questions are
available through the website www.autismdeal.com. Answering these questions should take no
more than 20 minutes. Your participation in this study is completely voluntary, and you can
chose not to participate. The results of this research study will be published but your child’s
name and your name will not be included or requested anywhere in this study or survey.
If you have any questions regarding the current study, please contact Jill Tschikof at 843-3776837, jreneej1@hotmail.com, or Dr. Linda Reed at 937-550-4269, Linda.Reed@capella.edu.
66