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)

© Jill Tschikof 2011

Abstract

Dedication

Acknowledgements

Table of Contents

CHAPTER 1. INTRODUCTION7

Background of the Problem7

Background of the Study8

Statement of the Problem9

Purpose of the Study10

Rationale11

Research Questions12

Significance of the Study13

Definition of Terms14

Assumptions and Limitations16

Nature of the Study17

Organization of the Remainder of the Study18

CHAPTER 2. LITERATURE REVIEW20

CHAPTER 3. METHODOLOGY43

CHAPTER 4. DATA COLLECTION AND ANALYSIS

CHAPTER 5. RESULTS, CONCLUSIONS, AND RECOMMENDATIONS

REFERENCES53

APPENDIX A. PARENT PARTICIPATION FLYER DISTRIBUTED AT SITE62

APPENDIX B. PROCEDURE AND INFORMATION FOR OFFICE STAFF63

APPENDIX C. SURVEY FOR MOTHERS TO ANSWER64

APPENDIX D. PROCEDURE AND INFORMATION FOR WEBSITES65

APPENDIX E. FLYER66

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 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 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, 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. 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 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?

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.

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 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.

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

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.

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).

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.

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 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 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 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)

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 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, Blakeley-Smith & 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

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 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 & 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, 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).

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 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 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 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 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 self-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 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 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 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 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 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 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 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.

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 = .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

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 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 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.

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.

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 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.

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 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.

REFERENCES

Abbeduto, L., Seltzer, M. M., Shattuck, P., Krauss, M. W., Orsmond, G., & Murphy, M. M. (2004). Psychological well being & coping in mothers of youths with autism, Down syndrome, or fragile X syndrome. American Journal on Mental Retardation, 3, 237–254.

Altiere, M.J., & Von Kluge, S. (2009). Family functioning and coping behaviors in parents of children with autism. Journal of Family Studies, 18, 83-92.

American Academy of Pediatrics. (2001). American academy of : Counseling families who choose complementary and alternative medicine for their child with chronic illness or disability committee on children with disabilities. Pediatrics, 107, 598–601.

American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (Revised 4th ed.). Arlington, VA: American Psychiatric Association.

Ashkenazi, A., Levin, S., & Krasilowsky, D. (1980). Gluten and autism. Lancet, 1(8160), 157.

Baker, B. L., Blacher, J., Crnic, K. A., & Edelbrook, C. (2002). Behavior problems and parenting stress in families of three year old children with and without developmental delays. American Journal on Mental Retardation, 107, 433–444.

Baker, B.L., Blacher, J., Crnic, K.A., & Edelbrock, C. (2002). Behavior problems and parenting stress in families of three-year old children with and without developmental delays. American Journal on Mental Retardation, 107, 433-444.

Baker, S. (2007). What is biomedical? Autism Research Institute.

Barber, B., K., & Buehler, C. (1996). Family cohesion and enmeshment: different constructs, different effects. Journal of Marriage and the Family, 58, 433-441.

Bartle-Haring, S., & Lal, A. (2010). Using Bowen to examine progress in couple therapy. The Family Journal, 18, 106-115. Behavioral Pediatrics 24 (6), 418–23.

Benson, P.R. (2006). The impact of child symptom severity on depressed mood among parents of children with ASD: the mediating role of stress proliferation. Journal of Autism and Developmental Disorders, 36, 685-695.

Berry, L. (2009).  Early treatments associated with optimal outcome in children with autism spectrum disorders. Unpublished doctoral dissertation, University of Connecticut, CT.

Biller, J.A., Katz, A.J., Flores, A.F., Buie, T.M., & Gorbach, S.L. (1995). Treatment of recurrent Clostridium difficult colitis with Lactobacillus GG. Journal of Pediatric Gastroenterology and Nutrition, 21(2), 224-226.

Blacher, J., & McIntyre, L.L. (2006). Syndrome specificity and behavioral disorders in young adults with intellectual disability. Cultural differences in family impact. Journal of Intellectual and Developmental Disabilities, 50, 184-198.

Bouma, R., & Schweitzer, R. (1990). The impact of chronic childhood illness on family stress: A comparison between autism and cystic fibrosis. Journal of Clinical Psychology, 46(6), 722-730.

Bowen, M. (1985). Family therapy in clinical practice. Lanham, Maryland: Rowman & Littlefield Publishers, INC.

Breakwell, G. M., Hammond, S., Fife-Schaw, C., & Smith, J. A., (eds). (2007). Research methods in psychology. (3rd. ed.). Los Angeles, CA: Sage Publications.

Brobst, J.B., Clopton, J.R., & Hendrick, S.S. (2009). Parenting children with autism spectrum disorders. The couple’s relationship. Focus on Autism and Other Developmental Disabilities, 24(1), 38-49.

Buts, J.P., & De Keyser, N., (2006). Effects of Saccharomyces boulardii on intestinal mucosa. Digestive Diseases and Science, 51(8), 1485-1492.

Cale, S.I., Carr., E.G., Blakeley-Smith, A., & Owen-DeSchryver, J.S. (2009). Context=based assessment and intervention for problem behavior in children with autism spectrum disorder. Behavior Modification, 33, 707-742.

Campbell D.B., Sutcliffe, J.S., Ebert,