Walden University ScholarWorks Walden Dissertations and Doctoral Studies Walden Dissertations and Doctoral Studies Collection 2016 Examining Maternal Psychological Recollections of Children Diagnosed With Autism Spectrum Disorders Christine Desiree Shoop Walden University Follow this and additional works at: https://scholarworks.edu/dissertations Part of the Clinical Psychology Commons This Dissertation is brought to you for free and open access by the Walden Dissertations and Doctoral Studies Collection at ScholarWorks. It has been accepted for inclusion in Walden Dissertations and Doctoral Studies by an authorized administrator of ScholarWorks. For more information, please contact ScholarWorks@waldenu. Walden University College of Social and Behavioral Sciences This is to certify that the doctoral dissertation by Christine Shoop has been found to be complete and satisfactory in all respects, and that any and all revisions required by the review committee have been made.
Review Committee Dr. Brian Ragsdale, Committee Chairperson, Psychology Faculty Dr. Chet Lesniak, Committee Member, Psychology Faculty Dr. Frederica Hendricks-Noble, University Reviewer, Psychology Faculty Chief Academic Officer Eric Riedel, Ph.
Walden University 2016 Abstract Examining Maternal Psychological Recollections of Children Diagnosed With Autism Spectrum Disorders by Christine Losinno Shoop MA, State University of New York at New Paltz, 2002 BA, State University of New York at New Paltz, 1998 Dissertation Submitted in Partial Fulfillment of the Requirements for the Degree of Doctor of Philosophy Clinical Psychology Walden University January 2016 Abstract Mothers of children diagnosed with autism spectrum disorders (ASDs) experience symptoms of depression, anxiety, stress, and despair stemming from the challenges of raising offspring with behavioral, communicative, and socioemotional impairments. Researchers have shown that children diagnosed with ASDs exhibit symptoms within the first year of life (early-onset), while some exhibit normal development until the second year (regressive-onset), and some exhibit normal development until the second year but display abnormalities in the first year (mixed-onset). Despite the wealth of research on ASDs, there are few examinations of ASD symptom onset groups and the impact of those onset groups on parental psychological experiences: stress, impact on family, and future hopes. This research compared the retrospective parent reports of 31 mothers across ASD onset groups (early-onset, n = 16, regressive-onset, n = 8, and mixed-onset, n = 7) with psychological experiences using Impact on Family Scale, the Vicarious Futurity Scale, and the Parent Stress Inventory.
A one-way multivariate analysis of variance assessed the relationship between maternal groups and psychological experiences. No significant differences were found between the groups. However, significant correlations were found between stress, family impact, and perceived hope for the future. Mothers reporting high levels of stress also reported high levels of family impact and low levels of perceived hope for the future.
There is a need for increased emotional support for mothers of children diagnosed with ASDs. It should be a standard practice for clinicians, upon diagnosing children with ASDs, to refer mothers and caregivers to therapy or support groups. This may alleviate key aspects of family stressors. Examining Maternal Psychological Recollections of Children Diagnosed With Autism Spectrum Disorders by Christine Losinno Shoop MA, State University of New York at New Paltz, 2002 BA, State University of New York at New Paltz, 1998 Dissertation Submitted in Partial Fulfillment of the Requirements for the Degree of Doctor of Philosophy Clinical Psychology Walden University January 2016 Dedication This body of work is dedicated to my son, Anthony, who not only educates but inspires me to help families affected by Autism Spectrum Disorders.
Maybe, in his lifetime, a cure will be found. Acknowledgments I would like to first thank my children, Anthony, Giavanna, and Jianni, for allowing me their incredible patience and understanding in order to complete this dissertation. Second, my parents, Rita and John Losinno, for giving me enormous support and an abundance of free babysitting while I took on this task. This dissertation is as much as their accomplishment as it is mine.
Third, The Center for Discovery, especially Drs. Theresa Hamlin, Rune Simeonsson, and Johanna Lantz, for providing never-ending guidance and allowing me to access the families they serve. Fourth, the mothers of children diagnosed with autism spectrum disorders who took the time out of their busy schedules to participate in my study. I truly appreciate the way you answered difficult questions about your children, families, and experiences in order to help out this old college student! Last, but certainly not least, my wonderful dissertation committee, Drs.
Brian Ragsdale, Chet Lesniak, and Frederica Hendricks-Noble for their invaluable feedback and advisement. Ragsdale provided me not only direction, but a big shoulder to cry on when I needed it. Rest in peace, Dr. Trocchio, and thank you! Table of Contents Chapter 1: Introduction to the Study…………………………………………………….1 What is autism……………………………………………………………1 History of autism…………………………………………………………2 No two individuals are the same…………………………………………6 Low-functioning vs.6 Early-onset vs.7 Regressive-onset vs.
child disintegrative disorder………………………8 How is autism diagnosed……………………………………………….9 How autism spectrum disorders affect families………………………….9 How early-onset and regressive-onset affect parents from seeking help.11 How healthcare professional fail to serve parents……………………….11 Background………………………………………………………………………13 Problem Statement……………………………………………………………….14 Nature of Study………………………………………………………………….15 Purpose of Study…………………………………………………………………17 Theoretical Base………………………………………………………………….17 Definition of Terms………………………………………………………………19 Assumptions…………………………………………………………………….21 i Significance of Study……………………………………………………………………21 Summary……………………………………………………………………….21 Chapter 2: Literature Review……………………………………………………………23 ASDs and Parental Stress……………………………………………………….23 Parental Stress and Coping with Children's ASDs………………………………25 ASDs and Parental Depression………………………………………………….26 ASDs and Parental Well-Being………………………………………………….28 Parental Perceptions Regarding Etiology and Treatment……………………….29 ASDs and Vicarious Futurity…………………………………………………….31 ASDs and Early and Regressive-Onset………………………………………….31 Summary…………………………………………………………………………39 Chapter 3: Research method…………………………………………………………….41 Setting and Sample………………………………………………………………42 Instruments………………………………………………………………………43 Procedures……………………………………………………………………….46 Data Collection and Analysis……………………………………………………48 Summary……………………………………………………………………….51 Descriptive Statistics……………………………………………………………51 Age of Onset……………………………………………………………………54 ii Data Collection………………………………………………………………………….58 Results……………………………………………………………………………59 Summary…………………………………………………………………………60 Chapter 5: Discussion……………………………………………………………………62 Interpretations……………………………………………………………………62 Limitations……………………………………………………………………….65 Implications………………………………………………………………………68 Recommendations for Future Research………………………………………….72 iii 1 Chapter 1: Introduction to the Study Most families in this United States are affected by autism, either by having a member diagnosed or knowing someone who has the diagnosis. Researchers have indicated that the number of children diagnosed with autism is increasing. Forty years ago, one in 10,000 individuals were diagnosed with autism; five years ago, one in 150 were diagnosed (Cave, 2008). Now it is believed that one out of 68 individuals is diagnosed with an autism spectrum disorder (Center for Disease Control and Prevention [CDC], 2014).
Autism is more likely to develop in boys (one out of 42) than girls (one out of 189) (CDC, 2014). Although there is no known cause, it has been speculated that the disorder stems from an interaction between genetics and the environment (Twoy, Connolly, & Novack, 2007). In the United States alone, 1.5 million individuals have autism; it is estimated that this number will increase to 4 million in 10 years (Twoy et al. Despite this growth, according to the research, there is no known cure (CDC, 2010; Twoy et al.
The CDC has called autism a growing medical concern (2011). Other researchers have declared it an epidemic (Cave, 2008). What is Autism? According to the Diagnostic Statistical Manual of Mental Disorders (DSM-IV- TR), autism is labeled autistic disorder and is classified as one of the pervasive developmental disorders (PDD) (American Psychiatric Association [APA], 2000). The APA categorizes five separate disorders under the umbrella term PDD (2000): autistic disorder, Asperger’s Disorder, Rett’s Disorder, childhood disintegrative disorder, and 2 PDD-not otherwise specified (PDD-NOS).
Autistic disorder, Asperger’s Disorder, and PDD-NOS are more commonly known as autism spectrum disorders (ASDs) (Kleinman et al. The common symptoms of ASDs include impaired verbal and nonverbal communication, socialization, and narrow but preservative interests and behaviors during the first few years of life (APA, 2000). History of Autism The first child to receive a diagnosis of autism was a little boy named Donald Gray Triplett by Austrian child psychiatrist Leo Kanner at Johns Hopkins University in 1938 (Donvan & Zucker, 2010). According to Donald’s parents, Oliver and Mary Triplett, he seemed intelligent: he could memorize passages of the bible and could recite the alphabet in reverse order (Donvan & Zucker, 2010).
However, Donald’s parents described him as disconnected from the world as he preferred to be alone; he also exhibited restricted interests and eating habits and often played with objects by spinning them (Donvan & Zucker, 2010). Because there was no evidence of hallucinations, a diagnosis of child schizophrenia was ruled out (Donvan & Zucker, 2010). Kanner did not have a diagnosis to give at that time, but several years later contacted Mary Triplett after meeting 10 other children like Donald (Donvan & Zucker, 2010; Sanders, 2009). Kanner’s original work was based on eight boys and three girls between the ages of two and eight years (Neumarker, 2003); he labeled his patients’ condition early- infantile autism; it was also known as Kanner’s Syndrome (Jacobsen, 2010): 3 Many of these children were brought to us primarily with the assumption that they were so severely feeble-minded or with the question of auditory impairment.
Psychometric test performances yielded indeed very low quotients, and often enough absent or inadequate responses to sounds of any kind gave good reason for the suspicion of deafness. But careful examination showed very soon that the children’s cognitive potentialities were only masked by the basic affective disorder…in all instances it could be established that hearing as such was not defective. The common denominator in all-these patients is their disability to relate themselves in the ordinary way to people and situations…disregards, ignores, shuts out anything that to the child from the outside. The same year that Dr.
Kanner developed his work on infantile autism, another Austrian psychiatrist named Hans Asperger published similar research in Vienna after assessing four boys between 7 and 11 years of age (Lyons & Fitzgerald, 2007; Neumarker, 2003; Sanders, 2009); however, Dr. Asperger published his work in German (his native tongue), while Dr. Kanner published his work in English (Lyons & Fitzgerald, 2007; Neumarker, 2003). Asperger’s research did not get published in the United States until 37 years after it was written (Sanders, 2009).
It was debatable which Austrian psychiatrist first discovered autism; however, neither was the first to use the term autistic. Bleuler, a psychiatrist from Switzerland, was the first person to use the term when describing people afflicted with schizophrenia (Lyons & Fitzgerald, 2007). In 4 fact, autism was originally thought to be a type of (or precursor to) child schizophrenia (Sanders, 2009). Kanner and Asperger differentiated autism and Asperger’s Disorder from schizophrenia in that children afflicted with the latter disorder usually exhibit normal development, whereas the former disorders are often present since birth (Sanders, 2009).
Nonetheless, the original DSM and DSM-II did not list autism as a disorder by itself, but as a subcategory of schizophrenia (Neumarker, 2003; Sanders, 2009); in 1980, the DSM-III was the first version to include PDDs as its own category (Jacobsen, 2010). Austrian psychologist Bruno Bettelheim, a concentration camp survivor during World War II, immigrated to the United States and eventually became the head of a residential school for children with emotional disorders (Baker, 2010). In the 1950s, Dr. Bettelheim worked with children diagnosed with ASDs; he compared them to concentration camp survivors (Baker, 2010; Lyons & Fitzgerald, 2010).
Bettelheim wrote about one of his patients diagnosed with autism named Joey; Dr. Bettelheim asserted that his patient’s condition was a result of poor parenting (Baker, 2010); Dr. Kanner was the first psychiatrist to use the term refrigerator moms to describe mothers who reportedly caused their children’s autism by not loving them enough (Park, 1998). Kanner and Bettelheim, along with many other professionals during that period, believed that autism stemmed from parents (mainly mothers) who were cold, unreachable, and who did not want their children.
This tendency to blame the parents for 5 their children’s disorders was pervasive in the 1950s and 1960s until parents started challenging this belief (Baker, 2010). Parents of children diagnosed with autism rallied against the misconception that they were to blame and brought further awareness of the disorder to the field of psychology. Bernard Rimland discovered that his toddler son, Mark, had autism by researching the disorder after doctors were unable to render a diagnosis (Edelson, 2009).