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Social skills training: A parent education program for culturally diverse parents of children with Autism Spectrum Disorders

Dissertation
Author: Nicole E. Brown
Abstract:
Current information pertaining to families with a child diagnosed with Autism Spectrum Disorders indicates a need for parent interventions that target social skills training, culturally responsive treatments for ethnic minorities, and stress and coping. In response to these needs, a culturally responsive program was designed to teach parents of children ages 6-12 with autism spectrum disorders (ASD), to facilitate social skills development in their children and reduce the parental stress associated with having a child diagnosed with an autism spectrum disorder. The program is intended to be a resource for clinicians that want to provide culturally responsive social skills training for parents of children with ASD, by serving as an adjunct to traditional forms of social skills training. This study consisted of three phases. The first phase consisted of a comprehensive review of existing literature. The second stage consisted of the integration of data in preparation for the development of the program. The final stage consisted of having the program evaluated for accuracy, effectiveness, and relevance of content by an expert panel.

TABLE OF CONTENTS LIST OF TABLES ………………………………………………………………………………………………………………………….vi DEDICATION ………………………………………………………………………………………………………………………..……vii ACKNOWLEDGMENTS ………………………………………………………………………………………………..……………viii VITA …………………………………………………………………………………………………………………………………………..ix ABSTRACT ………………………………………………………………………………………………………………………….......xiii Chapter One: Introduction ............................................................................................................... 1 Overview of Autism...................................................................................................................... 3 Cultural Diversity and Autism ...................................................................................................... 4 Social Skills Deficits & Training ..................................................................................................... 5 Purpose of the Proposed Project ................................................................................................. 6 Definition of Key Terms ............................................................................................................... 6 Summary ...................................................................................................................................... 7 Chapter Two: Literature Review ...................................................................................................... 8 Social Skills Deficits ...................................................................................................................... 8 Behavior Deficits ........................................................................................................................ 10 Cognitive Functioning ................................................................................................................ 11 Communication Deficits ............................................................................................................. 12 Parents of Children with Autism Spectrum Disorders ............................................................... 14 Social Skills Training ................................................................................................................... 17 Parent Education and Collaboration .......................................................................................... 20 Need for Culturally Responsive Interventions ........................................................................... 22 Chapter Three: Methodology ........................................................................................................ 25 Program Development ............................................................................................................... 25 Evaluation of the Program ......................................................................................................... 27 Analysis of Evaluation ................................................................................................................ 28 Chapter Four: Results .................................................................................................................... 30 Brief Overview of Data Collected from Literature Review ........................................................ 30 Integration of Data ..................................................................................................................... 32 Resource Manual ....................................................................................................................... 32 Design and Content of the Program .......................................................................................... 33 Overview of Evaluators’ Feedback ............................................................................................. 38 Chapter Five: Discussion ................................................................................................................ 52 Summary of Results ................................................................................................................... 52 Strengths of the Manual ............................................................................................................ 53 Limitations and Recommendations for Future Steps in Program Development ....................... 55 Conclusions and Implications of the Study ................................................................................ 56

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REFERENCES ................................................................................................................................... 58 APPENDIX A: Agency Contact Scripts and Authorization Form ..................................................... 72 APPENDIX B: Evaluator Telephone Script ...................................................................................... 78 APPENDIX C: Evaluator Qualification Form ................................................................................... 81 APPENDIX D: Evaluation Packet Cover Letter ................................................................................ 83 APPENDIX E: Evaluator Informed Consent Form ........................................................................... 85 APPENDIX F: Program Evaluation Form ......................................................................................... 87 APPENDIX G: Parent Program Outline ........................................................................................... 92

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LIST OF TABLES

Table 1. Evaluators’ Characteristics …………………………………………………………………………………………39 Table 2. Evaluator’s Feedback Question #1 ……………………………………………………………………………..39 Table 3. Evaluator’s Feedback Question #2 ……………………………………………………………………………..40 Table 4. Evaluator’s Feedback Question #3 ……………………………………………………………………………..40 Table 5. Evaluator’s Feedback Question #4 ……………………………………………………………………………..42 Table 6. Evaluator’s Feedback Question #5 ……………………………………………………………………………..42 Table 7. Evaluator’s Feedback Question #6 ……………………………………………………………………………..43 Table 8. Evaluator’s Feedback Question #7 ……………………………………………………………………………..43 Table 9. Evaluator’s Feedback Question #8 ……………………………………………………………………………..44 Table 10. Evaluator’s Feedback Question #9 …………………………………………………………………….……..45 Table 11. Evaluator’s Feedback Question #10 ……………………………………………………………………..…..46 Table 12. Evaluator’s Feedback Question #11 ……………………………………………………………………..…..47 Table 13. Evaluator’s Feedback Question #12 ……………………………………………………………………..…..48 Table 14. Evaluator’s Feedback Question #13 ……………………………………………………………………..…..49 Table 15. Evaluator’s Feedback Question #14 ……………………………………………………………………..…..50 Table 16. Evaluator’s Feedback Question #15 ……………………………………………………………………..…..51

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DEDICATION

“We are simultaneously like all others, many others, a few others, and no others” - unknown author

To the parents of children with Autism Spectrum Disorders who love that their child is like no other, yet appreciate the moments when they see how they are like many others.

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ACKNOWLEDGMENTS

It is with sincere gratitude that I wish to thank my understanding and patient husband and daughter, who have supported my never-ending quest for knowledge. I am extremely grateful to my parents who instilled in me, the need for academic excellence. Thank you to my in-laws whose support throughout the years has afforded me the opportunity to attain my academic goals. Thank you to my committee for their encouragement, support, and guidance through this process and throughout my career. Thank you to my family, friends, and colleagues whose support throughout my life and career has made all the difference. You are each a wonderful blessing in my life and without you, this dissertation would not have been possible. I would like to extend a special thank you to all of the children with Autism and their families whose experiences have inspired my research and ignited my desire to develop this program.

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VITA

Nicole E. Brown EDUCATION Florida Institute of Technology Melbourne, Florida March 2010 - Present  BACB (Behavior Analyst Certification Board) approved distance learning coursework in Behavior Analysis  Independent Supervised Fieldwork under the supervision of Nikol Manes, M.S., B.C.B.A.

Pepperdine University Los Angeles, California Sept. 2005 – Oct. 2010  Doctor of Clinical Psychology (Psy.D.), APA (American Psychological Association) Accredited Program  One-year specialization track: Cognitive-Behavioral Therapy  One-year specialization track: Cultural-Ecological and Community-Clinical Interventions  Activities: Multicultural Research and Training Lab (MRTL), Student Government Association Student Representative

Pepperdine University Encino, California Aug. 2003 - May 2005  Master of Arts in Psychology  Activities: Psi Chi Honor Society (President)

Pepperdine University Malibu, California Aug. 1997 - April 2001  Bachelor of Arts in Psychology  Minor in Spanish  Activities: Industrial Organizational Psychology Club (Internship Coordinator); Ambassadors Council (Historian); Panhellenic Association (President, Judicial Board Member); Inter- fraternity Council (Judicial Board Member); Delta Gamma Sorority (Vice-President Panhellenic, Vice-President Social Standards, Director of Rituals); Riptide Student Spirit Club; Black Student Union

University of California, Davis Davis, California Jan. 1999 - July 1999  Psychology Core Courses/Ethnic Studies

University of Belgrano Buenos Aires, Argentina April 1998 - July 1998  Studied Spanish language and culture  Traveled extensively throughout South America including Argentina, Brazil, Uruguay and Chile

CLINICAL EXPERIENCE Learning Dynamics Woodland Hills, CA May 2009 – Present Chairman of the Board and Executive Director  Founder of nonprofit community resource organization that provides parent education, adaptive skills training, psychological therapeutic services, educational therapy, and community education to English and Spanish speaking families

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Kaiser Permanente Medical Center Los Angeles, CA Aug. 2009 – Aug. 2010 Psychology Intern, Department of Psychiatry  Completion of APA Accredited Predoctoral Internship in Clinical Psychology  Provided individual, couple, and family therapy  Served as co-facilitator for weekly therapy groups including panic, phobia, and OCD; junior high school coping; coping for latency aged children with ADHD; and multifamily limit setting  Conducted psychodiagnostic assessments for outpatient psychiatry department, Attention Deficit Disorder psychoeducational assessments for pediatric department, and neuropsychological evaluations for pediatric oncology department  Completed four-month rotation in work stress clinic. Assisted in delivery of eight-session psychoeducation course on identification, reduction, and management of work-related stress  Served on multidisciplinary team with occupational therapy, speech and language therapy, neurology, pediatrics, and psychiatry to assist in the diagnosing of children with Autism Spectrum Disorders  Responsibilities included medical chart review; clinical interviewing; test administration, scoring, interpretation; DSM IV-TR diagnostic formulation; treatment planning, report writing; and feedback to family and referring clinician  Attendance at weekly didactic training seminars with topics in psychological assessment, diversity, neuropsychology, behavior medicine, couple therapy, and professional ethical/legal issues

LAC+USC Medical Center Los Angeles, CA Sept. 2008 – July 2009 Los Angeles County + University of Southern California Medical Center Psychology Clerk, Department of Psychiatry and the Rand Schrader Clinic  Conducted psychodiagnostic and neuropsychological assessments for outpatient psychiatry clinic and general hospital patients via Consultation and Liaison  Conducted English and Spanish neuropsychological assessments of individuals with HIV/AIDS at Rand Schrader Clinic  Responsibilities included medical chart review; clinical interviewing; test administration, scoring, interpretation; DSM IV-TR diagnostic formulation; report writing; and feedback to referring clinician  Attendance at weekly didactic training seminar with topics including psychological assessment, cross-cultural assessment across the life span, psychopharmacology, and ethical/legal issues  Management of Assaultive Behavior Training

Yellen and Associates Northridge, CA Feb. 2007 – May 2009 Psychological Assistant, Supervisor: Andrew Yellen, Ph.D.  Development, implementation, and facilitation of six weekly social skills groups for children ages 4 -15 years old with various diagnoses including Autism, Asperger, Attention Deficit, and Bipolar disorders  Provided individual, couple, and family therapy; conducted psychological and psychoeducational testing and assessment, including assessments with individuals ages 15- 35 living in a dual-diagnosis residential facility  Served as a peer supervisor to one post-doctorate psychological assistant and one predoctoral student

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Pepperdine Community Counseling Center Encino, California Sept.–Dec. 2005; Therapist, Doctoral Student, Supervisor: Anat Cohen, Ph.D. Sept. 2006 – Jan. 2008  Worked with children, families, individuals, and couples to develop social and emotional skills  Facilitated healing process during and after difficult situations and served as an active listener

RESEARCH EXPERIENCE Pepperdine University Los Angeles, California June 2008 – Aug. 2008 Independent Research, under the direction of Caroline Keatinge, Ph.D.  Independent research on the development of current projective tests including their scoring system and standardization, with emphasis on the use of projective tests with ethnically diverse populations  Preparation for conceptualizing a rationale for development of a projective test that is culturally sensitive

Pepperdine University Malibu, California Sept. 2004 – Dec. 2004 Research Assistant, Tomas Martinez, Ph.D.  Examined the impact of the LA Bridges Program in providing at-risk junior high students with an alternate lifestyle. Emphasis on family impact, academics, self-esteem and leadership  Experience in administration of Wide Range Achievement Test (WRAT 3), Coopersmith Self- Esteem Inventory (CSI), and California Healthy Kids Survey (CHKS) assessment measurements

Pepperdine University Encino, California Sept. 2004 – Dec. 2004 Research Assistant, Tamar Bourian, Psy.D. Candidate  Located, compiled, and indexed articles on bullying with emphasis on the effects of bullying on the victim and skills victims need to manage their experience

Pepperdine University Malibu, California Jan. 2000 – April 2001 Independent Research, under the direction of Tomas Martinez, Ph.D.  Independent research on the development of non-profit organizations, with emphasis on group homes. Creation of a group home model based on a combination of psychological and sociological methods, current set-up of group homes, and skills and techniques needed to function as a citizen in today’s society

Pepperdine University Malibu, California May 2000 – Aug. 2000 Summer Undergraduate Research Program (SURP), with Khanh Bui, Ph.D.  Development of a computer program that examines individuals’ implicit racial stereotypes towards violence

Pepperdine University Malibu, California Jan. 2000 – April 2000 Research Assistant, Annette Ermshar, Ph.D.  Located, compiled, and indexed current articles on Velo-cardio-facial Syndrome (VCFS) with emphasis on developmental factors associated with this disorder. Assisted in the recruitment of participants for research on the developmental factors associated with VCFS

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STUDENT AFFAIRS & UNIVERSITY EXPERIENCE Pepperdine University Malibu, California June 2006 – Jan. 2007 Member, University Diversity Council  Contributed to the collaborative effort of creating a strategic plans and goals for the alignment of diversity with the Christian mission and vision of the university  Served as Seaver Undergraduate College Staff Representative

Pepperdine University Malibu, California Nov. 2002 – Jan. 2007 Manager, Washington D.C. Internship Program  Provided career and academic advising to undergraduate students  Facilitation of program information sessions, professional skills, and time management workshops  Development and implementation of marketing strategies resulting in a over 200% increase in participants and expansion of program from two terms to year-round  Set and managed program budget of over $700,000 in expenses and over $1,000,000 in revenue  Development and implementation of program assessments and production of quarterly and annual reports  Hired, trained, supervised, evaluated and coordinated schedules and team meetings for student staff

Pepperdine University Malibu, California Nov. 2002 – Mar. 2003 Manager, On-Campus Interview Program  Development and implementation of marketing strategies resulting in an increase from 22 to 224 student participants in three months  Created and executed one day recruitment interview fair and coordinated school district/private school recruitment fair  Facilitated and hosted on-campus interviews and supervised student staff

Pepperdine University Malibu, California Oct. 2000 – Nov. 2002 Student Organizations Coordinator  Advised 60 student organizations on-campus, including fraternities, sororities, and clubs  Supervised, planned, and executed student related special events including Homecoming, New Student Orientation Sessions, and Greek Recruitment  Developed and maintained student organization related policies and university policies related to on-campus advertising and coordinated and approved student organization calendar of events  Developed and implemented program assessments and produced monthly and annual evaluative reports  Developed and maintained filing system for confidential records  Hired, trained, supervised, evaluated and coordinated work schedules and team meetings for 9 student staff members  Student Affairs Staff Member of the Month, June 2002

xiii ABSTRACT

Current information pertaining to families with a child diagnosed with Autism Spectrum Disorders indicates a need for parent interventions that target social skills training, culturally responsive treatments for ethnic minorities, and stress and coping. In response to these needs, a culturally responsive program was designed to teach parents of children ages 6-12 with autism spectrum disorders (ASD), to facilitate social skills development in their children and reduce the parental stress associated with having a child diagnosed with an autism spectrum disorder. The program is intended to be a resource for clinicians that want to provide culturally responsive social skills training for parents of children with ASD, by serving as an adjunct to traditional forms of social skills training. This study consisted of three phases. The first phase consisted of a comprehensive review of existing literature. The second stage consisted of the integration of data in preparation for the development of the program. The final stage consisted of having the program evaluated for accuracy, effectiveness, and relevance of content by an expert panel.

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Chapter One: Introduction

Autism spectrum disorders (ASD) are complex developmental disabilities that are characterized by a significant range of impairments in social interaction and communication, and the presence of restrictive or repetitive patterns of interest and behavior (American Psychological Association [APA], 2000). ASD include diagnoses of autistic disorder, pervasive developmental disorder – not otherwise specified (PDD-NOS), and asperger syndrome. These three conditions share some of the same diagnostic symptoms; however symptom onset and severity vary. Pervasive developmental disorders include these three developmental disabilities, as well as rett syndrome and childhood disintegrative disorder. The Center for Disease Control’s (CDC) Autism and Developmental Disabilities Monitoring (ADDM) Network released data in 2009 regarding an 11 site study based on data from surveillance year 2006 in order to determine the prevalence of ASD in the United States. The results indicated that approximately one percent of all children ages 3-17 and 1.3% of all children ages 6-8 in the United States had an ASD. These results show an increase in prevalence from the data related by the CDC and ADDM in 2007 indicating that approximately 1 in 150 eight year-old children in multiple areas of the United States had an ASD. Prevalence of ASD was 4.5 times higher among boys than girls. The prevalence of ASD among ethnic minorities varied, therefore it cannot be concluded that there are clinically significant differences in ASD across ethnic groups (CDC, 2009). In response to this large rate of occurrence, the Combating Autism Act (CAA) was passed in 2006 authorizing $920 million dollars in federal funding to support Autism. In 2009, President Barack Obama included $211 million dollars for autism in his Fiscal Year 2010 budget. This is the first year since the CAA was passed that funding for autism has been included in a President’s budget proposal. The Department of Health and Human Services (2009) reported:

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The President is committed to providing an additional $1 billion over the next eight years to expand support for children, families, and communities affected by ASD. The FY 2010 Budget includes $211 million dollars across Health and Human Services programs for ASD research, treatment, screening, surveillance, public awareness and supportive services. (p.3)

Even with these efforts, parents of children with ASD have one of the highest reported levels of stress when compared to other parent groups (Baker-Ericzen, Brookman-Frazee, & Aubyn, 2005; Gupta, 2007). Additionally, culturally diverse children with ASD may have an increased risk of low developmental achievement because cultural barriers prevent their families from accessing information about available services (Rodriguez, 2009). Furthermore, the majority of evidenced-based interventions have not included many ethnically diverse participants in their studies (Munoz & Mendelson, 2005; Zionts, Zionts, Harrison, & Bellinger, 2003), giving evidence that there is a need for interventions that are culturally responsive (Dyches, Wilder, Sudweeks, Obiakor, & Algozzine, 2004). This dissertation seeks to serve as a support for primary caregivers of children with ASD. The goal of the proposed study is to develop a culturally responsive parent education program that assists parents in positively reinforcing social skill development in children with ASD. Parents will learn how to assist their children in generalizing adaptive skills into their everyday lives. This program is intended to assist parents in managing stresses associated with a child’s diagnosis of an ASD.

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Overview of Autism Autism is a complex neurobehavioral disorder in which, “specific cognitive deficits play a key role, and for which genetic factors predominate in aetiology” (Bailey, Phillips, & Rutter, 1996, p. 117). Autism is characterized by impairment in reciprocal social interaction, impairment in communication, and the presence of repetitive and stereotyped patterns of behaviors, interests, and activities. Individuals with autism experience abnormalities in verbal and nonverbal communication. Verbal communication can be delayed or absent. If verbal communication is delayed, marked impairments observed may include lack of reciprocal conversation and use of idiosyncratic or stereotyped and repetitive language. Nonverbal communication impairments may include limited use of imaginative play, delayed language comprehension (e.g., questions, directions, humor), and difficulty joining words with gestures (APA, 2000). According to the American Psychiatric Association (2000), abnormalities in social interaction may be observed through impairment in a person’s ability to effectively use nonverbal behaviors to regulate social interaction, inability to establish and maintain developmentally appropriate peer relationships, and lack of social reciprocity or awareness of others. The presence of repetitive and stereotyped patterns of behaviors, interests, and activities may be observed in a variety of ways. Examples of ways these characteristics may manifest themselves include restricted interests, preoccupation with parts of objects or movement, inflexible or nonfunctional routines, and stereotyped body posture or movements. According to the American Academy of Pediatrics (2007), early signs of autism may be present before a child is 18 months. There is no cure for autism. However, “manifestations of the disorder [autism] vary greatly depending on the developmental level and chronological age of the individual” (APA, 2000, p. 70). Treatments that target the symptoms most central to autism (e.g. impairment in social interaction, communication, presence of restrictive or

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repetitive patterns of interest and behavior) are often effective in facilitating significant improvement. Prognoses for symptom reduction are often better for children when the interventions are implemented at an early age (Howlin, 1997; Stahmer & Aarons, 2009). Cultural Diversity and Autism Many individuals with psychological and educational problems do not obtain services that are helpful in managing their difficulties. Oftentimes this is because these services are unknown or unavailable to them. In 2000, the Surgeon General released a report entitled Mental Health: Culture, Race, and Ethnicity. In regards to mental health services, the report indicates that ethnic minorities have less access and are less likely to receive services, often receive a poorer quality of treatment, and are underrepresented in mental health research (U.S. Department of Health and Human Services, 2001). The majority of evidenced-based treatments for children have been developed using homogeneous Caucasian participant groups (Burns, Hoagwood, & Mrazek, 1999; Lau, 2006; Wilder, Dyches, Obiakor, & Algozzine, 2004). However, in the United States ethnic minority groups comprise the majority of people serviced in community mental health settings (United States Department of Health and Human Services, 2007). This is especially true in states with populations that are more ethnically diverse. For example, according to the State of California Department of Finance (2007) Caucasians comprised 44% of the total population in California in 2005 with the remaining 56% of the population consisting of Latinos, Asian-Americans, African- Americans, Pacific Islanders, American Indians and multiethnic individuals. “Educating children from all cultures requires working effectively with their parents” (Manning, & Lee, 2001, p. 163). However, when it comes to individuals with disabilities, it is important to recognize that interpretations of disabilities vary across cultures. Culture

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influences parents’ beliefs about the etiology, symptoms, prognosis, and appropriate treatment interventions for their child (Mandell, & Novak, 2005). Skinner and Weisner (2007) state: Interventions, no matter how well-designed and well intended they may be, will not work if they cannot be taken up by service providers and families and find a place in the cultural models and daily routines and practices of service organizations and families. (p. 310)

When clinical interventions are culturally responsive the likelihood of positive outcomes increases (Munoz & Mendelson, 2005). Therefore, to better meet the needs of these families it is important to equip parents and children with interventions that are culturally congruent. Social Skills Deficits & Training Social deficits are a defining characteristic of ASD (Rogers, 2000). Individuals with ASD need assistance in developing social skills and generalizing those skills to their environment (Mesibov, 1984). Many agencies and mental health professionals offer social skills training opportunities for individuals with ASD. These trainings often consist of weekly meetings for 1 hour and are conducted in small groups. Adaptive behaviors are culturally influenced (Olmeda & Kauffman, 2003), and social skills training can be helpful in developing adaptive skills and socially appropriate peer interactions (Carter & Hughes, 2005). Therefore, it is unfortunate that, “…little of the research on SST [Social Skills Training] focus on their relevance or effectiveness for non-White populations” (Banks, Hogue, Timberlake, & Liddle, 1996, p. 415). When interventions are culturally congruent and parents are empowered, the probability of parents integrating learned information into their family context increases (Kalyanpur & Shridevi, 1991). This is important because, if the environment the individual is exposed to during the remainder of the week does not positively reinforce the skills being taught, it is difficult to for the skills to become generalized outside of the social skills group setting (Sheridan, Kratochwill, & Elliott, 1990).

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Purpose of the Proposed Project Current information pertaining to families with a child diagnosed with ASD indicates a need for parent interventions that target stress and coping, social skills training for autistic children, and culturally responsive treatments for ethnic minorities (Coard, Wallace, Stevenson, & Brotman, 2004; Lau, 2006; Southam-Gerow, Weisz, & Kendall, 2003). In response to these needs, the purpose of this project is to design a culturally responsive program that teaches parents of school-aged children with ASD to facilitate social skills development in their children and reduce the parental stress associated with having a child diagnosed with an ASD. The program will serve as a resource for clinicians that want to provide culturally responsive social skills training for parents of children with ASD. The program is intended to serve as an adjunct to traditional forms of social skills training. A central goal of the program is to facilitate the empowerment of the clinician in implementing culturally responsive social skills interventions. In addition to providing clinicians with a resource for integration of culturally congruent techniques, clinicians will be provided with resources that will enable them to empower their parent-clients, and indirectly children with ASD. The specific objectives of this project include: a) a review of the literature on ASD, social skills training, multicultural approaches to interventions with individuals with ASD, and the benefits of parent education; b) development of a culturally responsive social skills training program for parents of children with ASD; and c) a critique of the program by an expert panel to evaluate its accuracy and relevance towards the intended population. Definition of Key Terms Culturally responsive: the process of developing appropriate and effective tools that work in the cultural context of the client by utilizing cultural knowledge, experiences, skill, and

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desire to create an environment that cultivates a belief in which alliances across cultures is enriching, rather than threatening, to shared goals (adapted from Campinha-Bacote, 2002). Multicultural: any language, culture, ethnicity, national origin, or socioeconomic status differing from the dominant middle- or upper-class European American, English-speaking culture (Wilder et al., 2004, p. 105). Autism Spectrum Disorders (ASD): complex developmental disabilities that are characterized by a significant range of impairments in social interaction and communication, and the presence of restrictive or repetitive patterns of interest and behavior (APA, 2000). Summary Recent autism statistics suggest that prevalence rates are increasing in general and among ethnic minorities (CDC, 2007). This suggests that there is a need for interventions designed to target associated social skills, communication, and behavioral difficulties in order to assist in the development of adaptive skills and reduce associated stressors. In response to the need of these families, this project is focused on the development of a program specifically designed for parents of children with autism. The goals of this program are to: (a) provide parents with information on ways to increase their child’s engagement in adaptive social skills, (b) to assist parents in identifying ways to decrease their subjective distress and increase effective ways of coping with the stress of parenting a child with autism, and to (c) provide families with a program that is culturally congruent.

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Chapter Two: Literature Review

ASD affect social interaction, language and communication, as well as the expression of restrictive or repetitive behaviors and interests. This chapter reviews deficits in ASD, parenting, and social skills training to assist in the development of an effective social skills training program for parents of children with ASD. There is no known single cause for ASD, but it is generally accepted that its origin is neurological and caused by abnormal brain structure or functioning. Turk et al. (2009) states that: Autism is not just one condition, but a wide range of social and communicatory disturbances that are influenced in their clinical presentations by etiology, level of intellectual functioning, presence or absence of epilepsy and a range of other factors that affect socialization and language development. (p. 680)

The symptoms of ASD range for each individual. “There is no single behavior that is always typical of autism and no behavior that would automatically exclude an individual child from a diagnosis of autism, even though there are strong and consistent commonalities, especially in social deficits” (National Research Council, 2001, p. 11). In order to gain a comprehensive understanding of the current literature in ASD, this chapter reviews the literature examining deficits in functioning associated ASD, parenting children with ASD, social skills training, and parent education and collaboration. Social Skills Deficits Impairment in social skills is considered to be a primary characteristic of ASD. “Social deficits are some of the most difficult to ameliorate in children with ASD and are considered a hallmark feature of the disorder” (Baker-Ericzen et al., 2005, p. 201). This element has remained consistent since the disorder was first identified (Kanner, 1943). Social skills are comprised of six domains including interpersonal behaviors, self-related behaviors, academic-related skills, assertion, peer acceptance, and communication skills (Gresham & Elliott, 1987). It is believed

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that the origin of social deficits in children with ASD range from neurological impairment to limited social interaction opportunities to attain skills. “…Efforts to understand the nature of the social difficulties in autism, and to find effective treatments, have driven research and clinical and educational practice for the past 40 years” (National Research Council, 2001, p. 66). Social skills impairments in children with ASD are seen in a variety of contexts. These children often fail to develop age-appropriate peer relationships (Welsh, Park, Widaman, & O’Neil, 2001), appear to have a lack of interest or enjoyment in social interactions (Leaf, Dotson, Oppeneheim, Sheldon, & Sherman, 2010), have deficits in social and emotional reciprocity (Le Sourn-Bissaoui, Caillies, Gierski, & Motte, 2009), and have communication deficits including difficulty with pragmatic language and understanding nonverbal behaviors (Loukusa & Moilanen, 2009). Impairment in social functioning makes it difficult for children to establish and maintain meaningful and fulfilling interpersonal relationships. “Interaction with peers is another dimension of children’s social development that becomes increasingly important for children beginning at the age of 3” (National Research Council, 2001, p. 73). Children with ASD are generally interested in interacting with others, although they experience difficulty understanding how to do so. The combination of social functioning deficits that children with ASD have often results in difficulty identifying, understanding, and following social expectations. In a study of high-functioning children with autism, Bauminger and Kasari (2000) found that children with autism had a desire for social involvement with others, yet experienced greater amounts of loneliness and less satisfaction with their social relationships then typically developing children. Children with autism have difficulty adapting meaning to their experiences, and making connections between ideas and events. “Their world consists of a series of unrelated

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experiences and demands, while the underlying themes, concepts, reasons, connections, or principles are typically unclear to them” (Mesibov, Shea, & Schopler, 2004, p. 21). Typically developing peers often perceive children with ASD as self-centered and socially awkward, making it difficult for them to establish and maintain friendships. Sociocultural context also influences social behaviors. The relationship between culture and social functioning is reciprocal. Behaviors of which members of a particular culture engage contribute to appropriate social functioning. Behaviors may be consistent in multiple cultures; however, the meaning that is given may vary greatly. Additionally, the socially acceptable behaviors in a given culture are determined by whether engagement in these behaviors is reinforced by members of the culture or result in negative consequences. An understanding of culturally influenced behavior facilitates a more accurate distinction between cultural differences in social skills and deficits in this area of functioning (Delgado Rivera & Rogers- Adkinson, 1997; Olmeda & Kauffman, 2003). Deficits in social skills that are not addressed may result in future difficulties for children. The effects may include negative peer interactions and rejection (Rodriguez, Smith-Canter, & Voytecki, 2007), poor academic performance (Welsh et al., 2001), and depression (Stewart, Barnard, Pearson, Hasan, & O’Brien, 2006). Behavior Deficits Children with ASD often “…demonstrate restrictive, repetitive, and stereotyped patterns of behavior, most often characterized by preoccupation with narrow, rigid and inflexible interests or ways of thinking or behaviors” (Cotugno, 2009, p. 1268). Restricted Repetitive Behaviors (RRBs) are a diagnostic component of ASD. Similar to other characteristics of ASD, behavior deficits vary among children. “These can include behavioral (e.g., stereotypes), communicative (e.g., echolalia), and cognitive (e.g., obsessions, insistence on sameness)

Full document contains 123 pages
Abstract: Current information pertaining to families with a child diagnosed with Autism Spectrum Disorders indicates a need for parent interventions that target social skills training, culturally responsive treatments for ethnic minorities, and stress and coping. In response to these needs, a culturally responsive program was designed to teach parents of children ages 6-12 with autism spectrum disorders (ASD), to facilitate social skills development in their children and reduce the parental stress associated with having a child diagnosed with an autism spectrum disorder. The program is intended to be a resource for clinicians that want to provide culturally responsive social skills training for parents of children with ASD, by serving as an adjunct to traditional forms of social skills training. This study consisted of three phases. The first phase consisted of a comprehensive review of existing literature. The second stage consisted of the integration of data in preparation for the development of the program. The final stage consisted of having the program evaluated for accuracy, effectiveness, and relevance of content by an expert panel.