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Mothers' description of raising two children with an autism spectrum disorder: A case study

Dissertation
Author: Nancy A. Walker
Abstract:
The study was a critical, naturalistic, and emergent case study that examined the coping strategies developed and employed by 6 mothers raising 2 children each with an autism spectrum disorder (ASD). The research was conducted using Robert Yin's (1994) case study model. The study investigated maternal psychosocial, spiritual, and emotional coping mechanisms that mothers apply in their daily lives to balance stressors brought by raising children with ASDs. This model incorporates a formal hypothesis based upon and integrating one or more theoretical constructs. The theoretical constructs that were used in this research are based upon Albert Bandura's (1986) social learning theory of self-efficacy and transactional model of stress and coping. As there has been little qualitative research done in this area of ASDs, this study was conducted to fill in the gaps of both qualitative and generalized research literature. Nonconventional qualitative methodology used included interviews with narratives and journaling exercises that span a period of 4 weeks. The goal of the research was to supply emergent data on mothers' coping agendas with material self-efficacy perception to be incorporated into therapeutic and psychoeducational models for intervention and instruction to aid mothers in families in which ASDs are prevalent.

Table of Contents Abstract ............................................................................................................................... v Dedication .......................................................................................................................... iii Acknowledgments.............................................................................................................. iv Table of Contents ............................................................................................................... vi List of Tables ..................................................................................................................... ix List of Figures ..................................................................................................................... x CHAPTER 1. Introduction.................................................................................................. 1 Background of the Study ........................................................................................ 1 Statement of the Problem ........................................................................................ 1 Purpose of the Study ............................................................................................... 3 Rationale ................................................................................................................. 4 Research Questions ................................................................................................. 5 Significance of the Study ........................................................................................ 6 Definitions of Terms ............................................................................................... 8 Assumptions and Limitations ............................................................................... 10 Organization of the Remainder of the Study ........................................................ 12 CHAPTER 2. Literature Review ...................................................................................... 13 A Need for Qualitative Research .......................................................................... 14 Brief History of Autism ........................................................................................ 16 Parenting Stress for Parents of an Autistic Child.................................................. 22 Parental Grief and Parenting Stress ...................................................................... 25

vii Theoretical Models and Parental Stress ................................................................ 32 Coping Researched Based on Theoretical Foundations........................................ 37 Conclusion ............................................................................................................ 39 CHAPTER 3. Methodology .............................................................................................. 42 Purpose of the Study ............................................................................................. 42 Research Design.................................................................................................... 42 Procedures ............................................................................................................. 46 Target Population and Participant Selection ......................................................... 47 Sampling Procedures ............................................................................................ 49 Data Collection ..................................................................................................... 51 Instruments ............................................................................................................ 61 Research Questions ............................................................................................... 62 Role of the Researcher .......................................................................................... 62 Research Protocol ................................................................................................. 64 Methodology Model.............................................................................................. 68 Theoretical Foundation of the Study..................................................................... 69 Level of Analysis .................................................................................................. 71 Study Constructs, Phenomenon, and Criterion ..................................................... 72 Population ............................................................................................................. 72 Sample................................................................................................................... 72 Critical Case Sampling ......................................................................................... 73 Ethical Considerations .......................................................................................... 74 The Role and Background of the Researcher ....................................................... 77

viii Risk ....................................................................................................................... 80 Strengths ............................................................................................................... 81 CHAPTER 4. Data Collection and Analysis .................................................................... 83 Description of the Population Sample .................................................................. 87 Data Main Themes .............................................................................................. 109 Generalized Findings .......................................................................................... 120 Categorized Patterns of Coping Techniques/Tools Across Cases ...................... 127 Naturalistic Generalizations ................................................................................ 129 Summary of the Research Question and Sub-Questions .................................... 130 CHAPTER 5. Results, Conclusions, and Recommendations ......................................... 131 Results ................................................................................................................. 131 Conclusions ......................................................................................................... 134 Limitations and Design Weaknesses .................................................................. 135 Recommendations ............................................................................................... 136 Implications......................................................................................................... 138 Summary ............................................................................................................. 140 REFERENCES ............................................................................................................... 141 APPENDIX A. Research Procedure ............................................................................... 147 APPENDIX B. Step-By-Step Description of Data Analysis .......................................... 148 APPENDIX C. Open-Ended Interview Topics ............................................................... 149 APPENDIX D. Journaling Guide Given to Each Participant ......................................... 150 APPENDIX E. Possible Follow-Up Questions for Interview ........................................ 151

ix List of Tables Table 1. Data Collected From Each Participant 88 Table 2. Category Frequency 128

x List of Figures Figure 1. Category frequency. 128 Figure 2. Main feelings used to cope across cases. 129

1 CHAPTER 1. INTRODUCTION Background of the Study Raising a child with autism is challenging and demanding for all parents. This challenge is magnified when more than one child in the family is autistic (Dudziak, 1986). Mothers of children with an autism spectrum disorder (ASD) are at risk for higher stress levels than mothers with non-autistic children. These mothers need to develop coping skills according to their children’s developmental disabilities. Building healthy coping mechanisms, positive maternal growth, and development benefits the entire family’s development (Bristol, 1979). Statement of the Problem The research problem or need for the study as discussed by Creswell (1998) was to investigate and assess the psychosocial, spiritual, and emotional effects of raising autistic children and adolescents on mothers. This proposed study was about the impact of autism on the family and, in particular, on mothers of children with an ASD. This study examined the coping strategies developed and used by mothers who were raising two children with an ASD. Benson (2006) and Dudziak (1986) both noted that low self- esteem and maternal depression were commonly associated with raising autistic children because of the stressful nature of raising these children (Benson, 2006; Dudziak, 1986). At the time of this study, one in 150 children is diagnosed with autism, the fastest growing developmental disability in the nation, with 1 to 1.5 million Americans having

2 an ASD (Centers for Disease Control and Prevention, 2010). These families were the subjects of this study. This increase had exponentially increased the number of families with more than one ASD child. For this research, the ASD child may have been in any of the developmental stages of childhood or adolescence, and there must have been more than one ASD child in the home. Based on research indicating mothers, who are usually the primary caregivers of autistic children, are at increased risk of poor mental health outcomes, such as depression, mothers were the specified population for this study. Fathers were not included in this study because they are usually not the primary caregivers (Benson, 2006). Benson (2006) stated that parents of autistic children were at a higher risk for having clinical depression than the parents of non-autistic children. His studies showed important phenomena to assess in families with autistic children. In mothers specifically, the rate of depression increased with the severity of the autism. This was due not only to the demands of caring for autistic children, but to other stressors such as poor coping strategies, low self-esteem, and marital challenges that may be engendered or exacerbated by their children’s disorders. Benson used quantitative methods to study families’ stress levels and stressors. Further research using qualitative methods should study the impact of autistic children on mothers while the autistic children still live in the home to show the effect in daily life situations (Benson, 2006). Benson stated that further research on this specific form of stress can greatly contribute to our understanding of stress and coping in general. It would also contribute to our ability to provide more effective assistance to those grappling with multifaceted challenges of rearing children with an ASD. The key finding in Benson’s research were that children with ASDs could both

3 directly and indirectly affect their parents’ well-being with stressors expanding and crossing over into areas of the parents’ lives (Benson, 2006, p. 693). Purpose of the Study This case study attempted to discover the personalized significance that ASDs directly and indirectly had on the identified mothers under investigation in the real-life situations in the study. Benson’s (2006) research used quantitative research to conclude that mothers of autistic childen had high depression levels and low self-esteem. This qualitative research discovered the additional impact of ASDs by investigating the mothers’ sense of self-efficacy in dealing not only with the stressors of ASDs but of having more than one ASD child. This study gave a voice to the mothers of two children with an ASD by providing an in-depth description of their experiences. It identified and interpreted emergent psychosocial, spiritual, and emotional coping themes for professionals. In contrast to Benson’s investigation (Benson, 2006) that used families with one autistic child and focused on both parents, this research focused on mothers as the primary caregivers in homes with two ASD children (Rodrigue, Morgan, & Geffken, 1990). During interviews and journaling exercises, mothers were encouraged to describe how they used psychosocial, spiritual, and emotional coping mechanisms to deal with the stressors brought about by their children’s ASD. Mothers were studied using Yin’s (1994) case study model. This model incorporated a formal hypothesis based upon and integrated one or more theoretical constructs. The study was emergent in nature, which allowed for additional questioning with corresponding and original data to be added to the study as the research progressed.

4 The emergent designs encompassed an approach that allowed for a rich, thick, and descriptive analysis of the research problem. The design formulated questions and added data that were based upon questioning that pertained to the research problem. The design then added additional information by accumulating open-ended emergent data that were based upon discovery (Yin, 1994). The researcher identified, described, and interpreted the mothers’ emergent coping themes. These themes were expected to include both positive and negative uses of coping. By using the psychosocial, spiritual, and emotional framework, this investigation gathered data and explored these specific areas related to the theoretical constructs being investigated (Yin, 1994). Rationale Robert Yin (1994) defined case study research methodology as an empirical inquiry that investigates a contemporary phenomenon in its real-life context; when the boundaries between phenomenon and context are not clear; and in which multiple sources of evidence are used (p. 23). This case study was a method of learning based on a comprehensive understanding of a complex circumstance. This study ascertained a descriptive case analysis, thus, the small sample size was appropriate for this methodology (C. Robson, 1993). The learning was obtained by describing and analyzing the circumstance, taken as a whole, in its context. This study learned virtually everything about the circumstance or phenomenon being studied. This included how the phenomenon operated and what the phenomenon did in relation to the extrinsic or contextual events that were a part of the phenomenon (Creswell, 1998; Tellis, 1997).

5 This research approach learned how or why something occurred. No control of events or behavior of the study participants was required. A basic theoretical perspective was laid to gather data. Tellis (1997) noted that descriptive case studies require developing an initial descriptive theory. For example, Pyecha (1988) used this methodology in a special education study by using Jean Piaget’s developmental stages as a theoretical foundation for his investigation. He used a pattern-matching procedure in a descriptive case study that is similar to the pattern matching that was used in this case study. A case study is to develop and simplify theories. Simplification promotes the ability to gather a wide variety of evolving data. The researcher can avoid any prior commitment to any theoretical model. In this way, the researcher developed a foundational theoretical construct to advance the case study. This study was based upon theoretical constructs according to previous quantitative study on families with autism. This methodology enabled continual investigation for data gathering, which was built upon discovering emergence of data that did not have to pertain to initial theories and theoretical constructs. The open-ended process of discovery permitted setting aside the basic theoretical notions to permit accumulating data based upon the research question (Tellis, 1997; Yin, 1994). Research Questions The main research question for this investigation was, How do mothers with two ASD children cope with ASDs in their daily lives? Additional sub-questions were as follows: 1. What coping techniques or strategies do the mothers talk about?

6 2. With what emotions do these mothers feel they must cope?

3. Are there specific techniques they use to cope with specific emotions?

4. Do the mothers share information that helps us understand their senses of maternal self-efficacy?

According to the central question and literature review, the main phenomenon of this central research question was maternal coping with autism impact. Constructs were as follows: 1. Psychosocial effect on mother

2. Spiritual effect on mother

3. Emotional effect on mother

4. Coping mechanisms

5. Raising children (parenting)

Significance of the Study According to Judge (1998), the concern was that there were not many well- defined, qualitative case studies using a narrative format that focused exclusively on mothers of more than one autistic child. There have been studies conducted with the family unit as a whole and the effects of autism in general; however, the longitudinal effect and impact of having two autistic children with ASD from childhood to adolescence was not well documented in a qualitative research agenda (Dudziak, 1986). In a quantitative study, Bristol and Schopler (1983) concluded that variables such as a mother’s age and the number of autistic children in the family and how these variables relate to cognitive appraisals and stress levels in families should be investigated more closely in future research on autism. Thus, this study was conducted to fill in the gaps of

7 understanding of the impact of ASDs on mothers. These data also contributed to the existing body of knowledge on how mothers with more than one ASD child experience and cope with the developmental disorder. Additionally, it supplied new and original data that surfaced from this qualitative case study. The importance of this research was to aid mothers with coping, self-efficacy, and human lifespan development for their benefit and for the benefit of their family. Research noted that mothers with autistic children reported poor to fair emotional and mental health; although they were strong in their support of their children (Benson, 2006). With concern for a mother’s positive development data was gathered to help the entire dynamic of development in families with two or more children with ASDs. However, as this study was limited to a small population from the same geographical area, the results could not be generalized. Additional research needed to be done because the results may or may not have been the same if the study were to be repeated in another demographic area, with a larger population. A mother’s emotional and mental well-being is paramount in families with autistic children. Positive family growth development is a concern in families with ASD children. The procurement of psychoeducation, new therapy models, and information is needed to aid in family care. Therefore, in light of this importance, there may have been a limit on applicability of these case study results. They may have been confined to this specified population and demographic area initially, until additional data would be gathered across the United States. Benson (2006) found parents with autistic children are at higher risk for and have higher levels of depression. His studies noted important repercussions that should be assessed in families with autistic children. The rate of depression specifically increases in

8 mothers with the severity of the autism disability. Although Benson studied families using quantitative analysis to show stress levels and stressors, additional research needed to be done to study the direct and indirect ramifications of stress on and the coping skills of mothers. Investigating the impact of autism on mothers with ASD children still living at home is vital for a rich, deep, and objective study to aid families. Benson (2006) noted that advanced research on the stress proliferation process would contribute greatly to effective intervention with those struggling with the multifaceted challenges of parenting a child with autism. The key finding to Benson’s research showed that parents were affected, directly and indirectly, by their child’s autism. Dudziak (1986) pointed out that raising a child with autism is challenging; and raising more than one child considerably amplifies the challenge. According to Benson’s findings, fresh research had to be developed explicitly studying mothers to minimize maternal stressors. Definitions of Terms The following are a list of conceptual definitions. They were based on the main phenomenon in this study. Each is defined and explained with its relevance to the investigation. Adolescence. The period of physical and psychological development from the onset of puberty (age 12) to maturity (age 18; Locke & Parke, 1999). Autism/autism spectrum disorder (ASD). Autism (a spectrum disorder) is a complex developmental disability that typically appears during the first 3 years of life. Autism is a neurological disorder that affects brain function. Symptoms and characteristics can present themselves in a wide variety of combinations, from mild to

9 severe and includes spectrum disorders (Olds & Papalia, 1998). Related to the sample, autism in this form is any ASD defined by the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (2000), or a diagnosis of a pervasive developmental disorders (PDD) or pervasive developmental disorders nature not otherwise specified (PDD-NOS). Childhood. According to Olds and Papalia (1998), childhood is the time of a person’s life when they are numerically under the age of 12. This is the period before adolescence, which typically starts at age 12. Coping mechanisms. According to Olds and Papalia (1998), coping mechanisms are both conscious and unconscious ways of adjusting to environmental stress without altering one’s goals or purposes. Interview. A direct conversation aimed at eliciting information for research, psychiatric diagnosis, evaluation, treatment planning, and so on. A psychologist or a social worker may conduct the interview. There is no psychometric information for an unstructured qualitative interview (Creswell, 1998). Journaling. Written documentation on a specific topic. Written documentation on feelings, emotions, circumstances, occurrences, life experiences, or specified protocol in research methodology. There are no specified psychometric proponents (Patton, 2002). Mother. A mother is a female parent in authority over her children (Olds & Papalia, 1998). Narrative. A description of a viewpoint or stance regarding lived experience, opinion, and how individuals’ stories shape their own lives and the lives of others. There is no psychometric information regarding narrative (Creswell, 1998).

10 Parenting/raising children. To care for, shape, and mold children’s ideals and perceptions in life with development to reach a maturity level before the children leave home and are on their own (Olds & Papalia, 1998). Psychosocial, spiritual, and emotional effect. The psychological, social, spiritual, and emotional impact (of autism) has on the mother. The psychological effect is directed toward the will or toward the mind in the mother’s cognitive functioning. The social effect is the effect of the interaction of and with society, and the relationships formed/negated due to the impact of autism on the mother. The spiritual effect is the effect concerning or relating to the spiritual relationship or religious values of the mother. The emotional effect is the effect that appeals to the mother’s emotions and sensibilities (Olds & Papalia, 1998). Self-efficacy. According to Bandura (1997), perceived self-efficacy is defined as people’s beliefs about their capabilities to produce designated levels of performance that exercise influence over events that affect their lives. Self-efficacy beliefs determine how people feel, think, motivate themselves, and behave. Such beliefs produce these diverse effects through four major processes (p. 63). They include cognitive, motivational, affective, and selection processes. In this study, self-efficacy is noted as something that a mother has or does not have. As it can be developed and improved upon, this research will investigate such with relevance to the mother’s coping agendas. Assumptions and Limitations Assumptions of this study noted that the participants shared their experiences openly and honestly. The participants were to identify self-efficacy thoughts and behaviors when educated by the researcher. The participants were thought to be willing to

11 journal their experiences in noting their emotions and coping via self-efficacy. The participants were thought to follow through with the entire study with no harm to neither themselves nor their families. A limitation of this study (although allowed by Yin’s [1994] model) was that the critical case analysis was based on six mothers (N = 6), with six main participants in all. The study interviewed only six mothers, all from the same geographic area of the United States. Therefore, the results cannot be generalized. The results may or may not have been the same if the study were repeated. It cannot be assumed that the experiences of all mothers of ASD adolescents and children, and their families can be applied to all mothers of children with an ASD and families throughout the United States. The themes, patterns, and data that come from this research, nevertheless, can be used as a basis for further study. Supplementary study on the themes that were found in this research can be explored. They can be assessed and evaluated in qualitative, quantitative, or mixed- methodological formats (Tellis, 1997). Researcher bias was also considered as a limitation to this study (Patton, 2002). The researcher had strong interest in families where there were diagnoses of ASDs. Furthermore, the researcher was a therapist who counsels autistic children, adolescents, and families through a developmental lifespan perspective. These biases may have influenced the study findings by slanting the researcher’s perspective of a precise coping model for application in a clinical setting. The researcher consequently, may have learned in one direction via personal bias in intervention techniques based on the themes found in this study. To counteract this bias, the researcher reviewed the results with a colleague in the field.

12 Organization of the Remainder of the Study The organization of the remainder of this study covers a literature review that examined past quantitative studies on parental stress and coping with autistic children. It explored the need to study this topic using qualitative methodology. Subsequently, methodology was then discussed as to the research approach and design. Discussion of how this methodology was conducted will follow. Data collection and analysis of the data will then be discussed via breaking down themes and patterns that relate to the research inquiry. The data from the participants was synthesized and noted in written and pictorial format. Lastly, the result of the data was noted with conclusion and recommendation for further research and application.

13 CHAPTER 2. LITERATURE REVIEW Autism has been the center of attention of exhaustive research during the past decade. This research had focused mainly on the medical aspects of the disorder. Little focus has been on the family unit as a whole related to coping and self-efficacy of the mother. Strategic implementation for the literature review consisted of using the psychological and medical data bases through Capella University and Johns Hopkins University. The databases consisted of PsycBOOKS, PsycINFO, PsycARTICLES, ProQuest Psychology Journals, Sage Psychology, SocINDEX, ProQuest Medical Library, and Science Direct. Boolean keywords and phrases that were instituted to aid in this topical search consisted of autism, ASD, Asperger’s disorder, mothers of autistic children, families with autism, coping of mother with autistic children, autism and special populations, family coping and autism, special education and autism, emotional regulation of mothers with autistic children, spiritual coping of mothers with autistic children, social coping of mothers with autistic children, psychological coping of mothers with autistic children, emotional coping of mothers with autistic children, stress management in families with autism, parental coping in families with autism, parental defense mechanism with special population, quantitative research on mothers with autistic children, qualitative research on mothers with autistic children, self-efficacy,

14 perceived self-efficacy of mothers in autistic families, and psychoeducation for families with autism. A Need for Qualitative Research In studying mothers of children with an autism spectrum disorder (ASD), the following literature review examined quantitative studies on parental stress and coping with autistic children. It explored the need to study this topic using qualitative methodology. Quantitative methodological and theoretical approaches were discussed in their usefulness in the previous study of parents’ coping strategies. Using a qualitative approach was needed, however, to allow data gathering focusing on a mother’s coping strategies. Investigating her exercise of self-efficacy was likewise pertinent to her coping agendas (Olds & Papalia, 1998). Gaps in research over the past decade showed a great demand for qualitative data on the subject of the impact of autism on mothers due to the high levels of stressors placed upon them. Due to these high stress levels, research showed that mothers need coping strategies to deal with the strain of autism in their daily lives (Dudziak, 1986). Qualitative research in case study format on mothers of children with an ASD allowed for a deeper, richer, and intimate look at how they cope as opposed to a numerical analysis of coping mechanisms (Leedy & Ormrod, 2005). Consequently, practitioners may be able to aid them to do so more effectively by using the data that was collected for their understanding and application. Likewise, additional studies were built on these foundations of data to produce appropriate psycho education for families and a greater understanding for the field (Mesibov & Schopler, 1984). It was the researcher’s goal to

15 study the outcomes of this research and conduct further investigation based on the themes to add to practitioner understanding and family education. Quantitative Evidence Research showed that stress and negative maternal perception had been found to bring about depression in mothers of children with ASDs (Benson, 2006). Quantitative research was done on stress levels and stress management models. This research was based on Bandura’s (1997) social learning theory with self-efficacy, and Lazarus’s (1993, Lazarus & Folkman, 1984) transactional model of stress management. Lazarus’s theory noted the importance of evaluating coping skills that were connected with cognitive appraisals in parents. This theoretical evidence on stress and stress management validated the need to study mothers’ coping strategies with respect to their perceived maternal self- efficacy (Bandura, 1997). Cognitive appraisals by parents are introspective appraisals. According to Maslow (as cited in Olds & Papalia, 1998), these appraisals shift focus towards self-actualization by employing positive self-efficacy parenting patterns. Positive appraisals aid in the parent becoming more of whom they are in progressing to full their potential. Positive parenting patterns that incorporate affirmative self-efficacy appraisals were accomplished by using effective coping strategies for the individual (Olds & Papalia, 1998). Building a Case This literature review included quantitative evidence showing that stress was placed on parents raising autistic children. There was a lack of qualitative evidence on maternal self-efficacy and maternal coping. Therefore, continued study of maternal coping related to maternal self-efficacy in the qualitative realm was needed. This

16 qualitative study enabled mothers to tell their stories, and thus add and build upon data noting the experience of the process of raising two children with ASDs. Emerging data was also necessary for continued study and application to mothers’ psycho-education in using effective coping strategies, in addition to establishing a coping model in clinical settings. Quantitative research showed that mothers cope differently from fathers, and they also have greater stress levels (Connolly, Novak, & Twoy, 2007; Lazarus, 1993). Investigating how mothers cope with ASDs using qualitative methodology enabled data to directly investigate a mother’s cognitive appraisals. Cognitive appraisals of the mothers’ self-efficacy contributed to data for better interpretation of research that can lead to the design of a coping-based therapy model solely for mothers of children with an ASD. Most quantitative research was done on families with one autistic child (Dudziak, 1986, Mesibov & Schopler, 1984). This research not only filled in the methodology gaps to provide qualitative data on mothers; it also provided data filling in the gaps of research on mothers raising two children with ASDs (Bristol & Schopler, 1983). Because the rate of autism in the United States was and is on the rise with evidence pointing to families having more than one autistic child, this research is very significant (Autism Society, 2008). Brief History of Autism In 1943, Leo Kanner first described autism as a condition caused by improper parenting that produced emotional conflict between a mother and a child. He took the term autism from Eugen Bleuler, who used it to clarify abnormal, self-centered cognitive thinking patterns of schizophrenic patients that he treated. He noted these similarities between autistic and schizophrenic children in their incapacity to relate to others, along

Full document contains 164 pages
Abstract: The study was a critical, naturalistic, and emergent case study that examined the coping strategies developed and employed by 6 mothers raising 2 children each with an autism spectrum disorder (ASD). The research was conducted using Robert Yin's (1994) case study model. The study investigated maternal psychosocial, spiritual, and emotional coping mechanisms that mothers apply in their daily lives to balance stressors brought by raising children with ASDs. This model incorporates a formal hypothesis based upon and integrating one or more theoretical constructs. The theoretical constructs that were used in this research are based upon Albert Bandura's (1986) social learning theory of self-efficacy and transactional model of stress and coping. As there has been little qualitative research done in this area of ASDs, this study was conducted to fill in the gaps of both qualitative and generalized research literature. Nonconventional qualitative methodology used included interviews with narratives and journaling exercises that span a period of 4 weeks. The goal of the research was to supply emergent data on mothers' coping agendas with material self-efficacy perception to be incorporated into therapeutic and psychoeducational models for intervention and instruction to aid mothers in families in which ASDs are prevalent.