USE OF MODULAR THERAPY TO TREAT ANXIETY FOR SCHOOL AGE STUDENTS WITH AUTISM By Melissa Glenn, M.S. July, 2024 Director of Dissertation: Christy M. Walcott, Ph.D. Major Department: Psychology ABSTRACT Autism spectrum disorder (ASD) is a neurological disorder characterized by challenges with social communication, interpersonal skills, sensory stimulation, and restricted and repetitive behaviors. Because of these challenges, the social demands of school can produce anxiety in some children with ASD. Although practitioners use several evidence-based interventions to treat autism, there are few that address the anxiety symptoms commonly associated with individuals with ASD. This study examines the extent to which perceived anxiety levels decrease for school-age children with autism who also present with anxiety-related concerns. It also examines the extent to which children with ASD rate the usefulness of the intervention, and parent and teacher satisfaction with the intervention. A modified version of the Modular Approach to Therapy for Children with Anxiety, Depression, Trauma, and Conduct Disorders (MATCH-ADTC) was adapted to include more visuals, schedules, and social stories. In addition, the researcher measured the effectiveness of the intervention by collecting data on the students’ engagement (determined by the practitioner) and feedback on the students’ experience (determined by the student). USE OF MODULAR THERAPY TO TREAT ANXIETY FOR SCHOOL AGE STUDENTS WITH AUTISM A Dissertation Presented to the Faculty of the Department of Psychology East Carolina University In Partial Fulfillment of the Requirements for a Degree Ph.D. In Health Psychology By Melissa Glenn, M.S. July, 2024 Director of Dissertation: Christy M. Walcott, Ph.D. Dissertation Committee Members: Jean A. Golden, PhD Melissa E. Hudson, PhD Tosha L. Owens, PhD © Melissa Glenn, M.S., 2024 In memory of my Grandpa William Glenn. From a young age, you encouraged me to value my education. In particular, you always asked me to write stories for you to read. You went home before this one was complete, but this is for you. I thank God that you planted that seed and knew I could do it before I did. ACKNOWLEDGMENTS God is good, all the time, and all the time God is good. Because I am nothing without God, I want to acknowledge him first as Lord, and none of this would have been possible without him! To the Glenn family (Mommy, Daddy, Jenny, Val, Dee): I love you all so much! I am appreciative of every bit of support (financial, emotional, and spiritual) you’ve poured into me along my academic journey. I promise I never took a bit of it for granted. It was tough being away from you all for so long, but the phone calls, video calls, brief weekend trips, and nostalgic photo/video viewing helped me get through. I did all this because I am committed to making sure we are all good for the future! I especially want to thank my mommy, Dr. Pascale Glenn. I knew I could do it because you did it first! It wasn’t easy for either of us (for different reasons), but you believed in me, encouraged me, and stuck beside me through this very difficult journey. God bless you all! St. John Newman, pastor, and friends: I am so thankful for powerful intercessions and such great memories as I completed this project at Newman. It was such a blessing to shift from extreme focus in the study rooms, to peace, relaxation, and gratitude in the chapel. To my committee (Dr. Walcott, Dr. Golden, Dr. Hudson, and Dr. Owens): Thank you for your time, your commitment, your dedication to me and my project. I am grateful for each of you. I know you will continue to change lives, just as you have done for me in such a short period of time! To the district mental health team (Ashley Padgett, Maria Morris, and Emily Bland) that helped with recruitment, I can’t thank you enough! You all are superheroes! TABLE OF CONTENTS LIST OF TABLES ....................................................................................................................... viii LIST OF FIGURES ....................................................................................................................... ix CHAPTER 1: INTRODUCTION & LITERATURE REVIEW ..................................................... 1 Advocacy for Mental Health Services for All Students ............................................................................ 2 Barriers to Providing Mental Health Supports in Schools ........................................................................ 4 Anxiety: A Leading Mental Health Issue ................................................................................................. 7 Biological Components of Anxiety ....................................................................................................... 7 Psychological Components of Anxiety ................................................................................................. 9 Social Components of Anxiety ............................................................................................................. 9 Evidence-based Anxiety Treatment ........................................................................................................ 10 Autism Spectrum Disorder ..................................................................................................................... 10 Clinical Diagnosis ............................................................................................................................... 10 School Classification .......................................................................................................................... 11 ASD Treatment and Services .............................................................................................................. 13 Anxiety and ASD .................................................................................................................................... 15 Developmental Model of Understanding Anxiety in ASD ..................................................................... 17 Cognitive Behavioral Therapy ................................................................................................................ 18 Research on Therapy for Students with ASD ..................................................................................... 19 Modular Therapy and ASD ................................................................................................................. 19 Purpose of this Study .............................................................................................................................. 21 CHAPTER 2: METHOD .............................................................................................................. 24 Setting ..................................................................................................................................................... 24 Participants .............................................................................................................................................. 24 Recruitment ......................................................................................................................................... 24 Inclusion Criteria ................................................................................................................................ 25 Exclusion Criteria ............................................................................................................................... 25 Final Sample ....................................................................................................................................... 26 Measures/Dependent Variables............................................................................................................... 27 Anxiety Screeners ............................................................................................................................... 27 Intervention Usefulness Survey .......................................................................................................... 29 Parent/Teacher Intervention Ratings ................................................................................................... 30 Procedure ................................................................................................................................................ 31 Baseline Data & Activities .................................................................................................................. 31 MATCH-ADTC Intervention ............................................................................................................. 32 Data Analysis .......................................................................................................................................... 36 CHAPTER 3: RESULTS .............................................................................................................. 40 Research Question 1 ............................................................................................................................... 40 Ashton (Pseudonym for Participant One) ........................................................................................... 40 Jackson (Pseudonym for Participant Two) ......................................................................................... 44 Sawyer (Pseudonym for Participant Three) ....................................................................................... 46 Student Data ........................................................................................................................................ 49 Pre-Post Intervention Ratings ............................................................................................................. 49 Research Question 2 ............................................................................................................................... 51 Research Question 3 ............................................................................................................................... 53 Differences Between Parent and Child Ratings .................................................................................. 54 Parents Pre- and Post-Intervention Ratings......................................................................................... 55 CHAPTER 4: DISCUSSION ........................................................................................................ 57 Limitations .............................................................................................................................................. 60 Conclusion .............................................................................................................................................. 64 REFERENCES ............................................................................................................................. 65 Appendix A - SCARED Child Form ............................................................................................ 78 Appendix B - SCARED Parent Form ........................................................................................... 80 Appendix C - Behavioral Intervention Rating Scale .................................................................... 82 Appendix D - Therapy Evaluation Inventory ............................................................................... 83 Appendix E - Visual Schedule ...................................................................................................... 84 Appendix F - Social Story............................................................................................................. 85 Appendix G - Pre-intervention survey .......................................................................................... 92 Appendix H - Post-intervention survey ........................................................................................ 93 Appendix I – IRB Approval Letter ............................................................................................... 94 LIST OF TABLES 1. Pre-Intervention Parent/Child SCARED Ratings- Ashton ........................................ 41 2. SCAS Total Parent/Child Ratings- Ashton ................................................................ 42 3. Pre-Intervention Parent/Child SCARED Ratings- Jackson ....................................... 44 4. SCAS Total Parent/Child Ratings- Jackson ............................................................... 45 5. Pre-Intervention Parent/Child SCARED Ratings- Sawyer ........................................ 47 6. SCAS Total Parent/Child Ratings- Sawyer ............................................................... 48 7. Pre/Post Intervention Child SCARED Ratings .......................................................... 50 8. Pre/Post Intervention Survey Ratings ........................................................................ 52 9. Parent Ratings on the SCARED ................................................................................ 55 LIST OF FIGURES 1. Nonconcurrent Multiple Baseline Data Presentation ................................................. 43 CHAPTER 1: INTRODUCTION & LITERATURE REVIEW According to Individuals with Disabilities Act (IDEA) of 2004, children who qualify for special education supports and services under the autism category (IDEA, 2004) may exhibit problematic academic, behavioral, and mental health challenges in schools. Specific individualized educational programs address the academic and behavioral components of behavior, but seldom address the mental health behaviors commonly associated with their classification. Internalizing disorders include thoughts and behaviors related to emotional distress, life challenges, and trauma (Wergeland et al., 2021). Unlike externalizing disorders (acting out disorders) which are easier to operationalize and identify because of their behavioral topography, internalizing (acting in) behaviors are not often observable or measurable. The subtle nature of internalizing behaviors can make the classification of disorders a complex and arduous process. Identification of internalizing disorders can be especially difficult in children with autistic traits because some anxiety-related behaviors may present as autism-related behaviors (e.g., flapping, withdrawal, idiosyncratic fears). It is especially important that these students are identified and assisted by experts in autism and mental health services. School psychologists are highly qualified experts who assist general and specialized populations in academic, behavioral, and mental health services. Delivering an anxiety-focused intervention to school age students with ASD may lead to positive outcomes including student satisfaction, decreased reports of anxious feelings, and teacher and caregiver approval. The following literature review will present a rationale for this study and a review of current research in the areas of autism, anxiety, and school mental health intervention. 2 Advocacy for Mental Health Services for All Students Growing research supports evidence that mental and psychological well-being positively correlated with academic performance (Agnafors et al., 2021; Halpern-Manners et al., 2016; Hanchon & Fernald, 2013). Therefore, in efforts to support students’ overall well-being in schools, several organizations encourage school psychologists to provide comprehensive services which address not only academic and behavioral needs but also the mental and psychological well-being of students in schools. The National Association of School Psychologists (NASP) has a commitment to serving mental health supports to all students regardless of age, race, sex, gender, disability status, and cognitive level (NASP, 2020). Also, per NASP’s professional ethics, professionals in school psychology are to promote student wellness (NASP 2010; NASP, 2014). Within the context of fairness and justice, Standard I.3.4 of the NASP (2010) ethics guidelines states that “school psychologists [must] strive to ensure that all children have equal opportunity to participate in and benefit from school programs and that all students and families have access to and can benefit from school psychological services” (p. 6). Court cases, such as Wyatt v. Stickney (1971), have also concluded that practitioners were responsible for such treatment (Bailey & Burch, 2016). In recent years, political leaders, activists, and practitioners have made multiple calls to action advocating for an increase of school psychologists to join multidisciplinary school teams and integrate mental health services into the school setting. Legislative acts (i.e., the Mental Health Awareness and Improvement Act of 2015, the Patient Protection and Affordable Act of 2010, Safe Schools Improvement Act of 2021, and Strengthening America’s School Act of 1994) have also opened the conversation of school psychologists becoming essential members of school-based mental health (SBMH) teams (Eklund et al., 2017). This team of professionals includes social workers, school counselors, and 3 school psychologists who collaborate with educators to solve the needs of children and assess how multiple systems (e.g., biological, psychological, and social) interrelate and impact a child’s behaviors and well-being. Failure to address these issues, however, can result in poor social, emotional, behavioral, and academic (SEBA) outcomes (Weist et al., 2022). Thus, SBMH practitioners are encouraged to assist multi-tiered systems of support (MTSS) teams in the commitment of screening students in need of additional supports, using diagnostic measurements to determine present skills and deficits, monitoring progress to determine any improvements or gained skills, and ensuring implementation to assess the usefulness and effectiveness of the intervention (Eklund et al., 2017; Weist et al., 2022). MTSS is a preventative method of identifying students at risk of SEBA challenges. Positive behavioral intervention supports (PBIS) are part of the MTSS framework and aim to identify students at risk of emotional and behavioral concerns. Within the context of mental health supports, MTSS teams work together to provide positive behavioral supports to all children at the universal and preventive level (Tier 1). Students who exhibit further mental and behavioral difficulties receive supplemental Tier 2 group support along with other children who present with similar challenges and need of this level of support. If efforts to remediate risk at level 2 are unsuccessful, students are supported in a Tier 3 support, where they receive direct one-on-one therapeutic interventions (Eklund et al., 2017; Weist et al., 2022). There are many families who may seek mental health supports, but may face challenges to receiving them (i.e., lack of access to transportation, health insurance, affordability, difficulties with work schedules, etc.). Public schools are designated locations where students have access to integrated support including education, mental health services, and transportation, making the school setting the most accessible location for mental health services (Hanchon & Fernald, 4 2013). According to national data, 13-20% of school-age children are diagnosed with a mental health disorder per year (NASP, 2015), and one in five adolescents display “significant symptoms of emotional distress” (Hanchon & Fernald, 2013). An estimated 70-80% of children who used mental health services received them using school-based mental health services in according to NASP (2015). This suggests that schools are not only a central location to receive supports, but that they are a critical place for the majority of students who have mental health needs. Students with unmet mental health needs are at greater risk of declining mental health (Furtado et al., 2018), developing other mental health issues/diagnoses (Quenneville et al., 2020), dropping out of school (Porche et al., 2011), and increasing suicidal ideation and attempts (Narmandakh et al., 2021). School psychologists must continue delivering mental health support to students to support their emotional well-being and success in school. Barriers to Providing Mental Health Supports in Schools NASP proposes a 1:500-700 school psychologist to student ratio; however, studies suggest that many practitioners serve two-to-four times the number of recommended students and that significant differences in the ratio of students-to-school psychologists exist across broad regions of the United States (Affrunti, 2022). Understaffed schools and a shortage of school psychologists contribute to the difficulty of providing comprehensive services to students. Despite advanced skills training, school psychologists have been assigned more primary roles in standardized psychoeducational testing and providing data and evidence to support a multidisciplinary team’s decision to appropriately determine a child’s educational needs over the past few decades (Eklund et al., 2020; Schroeder et al., 1987). Failed systems-level programs and limited school resources have impeded school psychologists’ ability to expand their expertise in the school setting. 5 Although there are benefits to teachers understanding child behavior, SBMH experts are responsible for supporting teachers by addressing these mental health concerns with students. Teachers, whose primary role is to educate, are sometimes expected to provide mental health supports. As of 2018, there were approximately 30 programs in the United States that train educators on mental health disorders and how to identify and treat symptoms (Anderson et al., 2018). Because there are very few mental health- focused programs available, many teachers may lack the confidence, knowledge, and skills necessary to treat concerning behaviors. In addition, an increase in problem behaviors in the classroom may be a frustration for teachers and may impede the flow, pace, or ease of instruction. Thus, tacking on additional responsibilities and managing their own workload as a result of a mental health need can lead to burnout (Hester et al., 2020). An interconnected systems framework (ISF) is a model used to promote MTSS and prevent challenging behaviors in schools. As a part of MTSS, schools aim to engage in positive behavior intervention supports (PBIS) at three levels (Weist et al., 2022). At the universal level, Tier one supports are intended to serve all students. The second tier is an additional level of support that addresses supplemental ways to increase emotional, and/or behavioral development. Lastly, the third tier is an intensive level of support for students who may benefit from more frequent services. An increase in the range of school psychological services is possible when MTSS, an integration of response to intervention (RTI) and positive behavioral intervention supports (PBIS), is implemented. RTI is a way to track the effectiveness of SEBA interventions by documenting baseline and intervention data over the course of time. Schools that successfully carry out MTSS with fidelity have been reported to experience less staff turnover, disciplinary referrals, and suspension rates (Weist et al., 2022). 6 Unfortunately, schools continue to struggle to gather the resources and personnel to identify at-risk students and successfully intervene in academic and behavioral areas at the early stages. The intention of Special Education is to provide specially designed instruction if it is necessary to make adequate progress in academic or behavioral areas; however, for many districts, it appears to be a default placement to meeting the child’s needs before prior interventions have been placed or attempted. School psychologists are trained to support early universal, supplemental, or intensive interventions to reduce the number of inappropriate referrals to special education. According to the Individuals with Disabilities Education Improvement Act (IDEA), students should not be considered for special education services due to limited English language proficiency or lack of appropriate instruction (IDEA, 2004). Furthermore, it is suggested that appropriate referrals include a comprehensive assessment to understand the multiple layers of a child’s profile (including their response to intervention, attendance, English proficiency, etc.). There is some controversy surrounding the “wait to be sure” method of intervening (i.e., MTSS, RTI), and “sooner the better” (i.e., test and place), but ultimately, researchers suggest that a reconstruction of current systems may be warranted to better conceptualize the needs of students (Park, 2020). This continues to be an issue for school districts who struggle to identify students in a systematic way. Thus, many school psychologists spend much of their time doing special education evaluations (Weist et al., 2022), especially when the student-to-school psychologist ratio is higher than the NASP recommendation (Farmer et al., 2021). With a rise in mental health conditions over the past few decades, there is growing concern that student psychological needs may increase while practitioners spend most of their time in eligibility meetings, testing sessions, and report writing. For this reason, school psychologists and mental health advocates have made multiple calls for action in efforts to 7 increase the number of school psychologists and their engagement with students’ mental and psychological wellness (Hanchon & Fernald, 2013; NASP, 2014). Anxiety: A Leading Mental Health Issue Awareness of the interdisciplinary systems (i.e., biological, psychological, and social factors) involved in a child’s life helps practitioners engage in data-based decision-making to support the child’s mental and behavioral health (NASP, 2020). Anxiety disorders are among school-age children’s leading mental health issues (Narmandakh et al., 2021). Anxiety symptoms are typically detected at an early age, but many children are not reported to receive treatment (Narmandakh et al., 2021). Narmandakh and colleagues (2021) suggest that failure to treat anxiety may lead to long-lasting symptoms that carry into adulthood. The NASP Model for Comprehensive and Integrated School Psychological Services states that school psychologists must be aware of biological, psychological, and social influences on a child’s well-being (Domain IV; NASP, 2020). This biopsychosocial model is a common framework for understanding physical and behavioral health conditions (Borrell-Carrio et al., 2004). In short, this model suggests that there are multiple factors (i.e., biological psychological, and social/cultural) that impact a person’s behaviors and actions. This approach contrasts the idea that one specific factor (e.g., family) is solely responsible for child outcomes. Instead, there are various protective factors and risk factors within multiple interdisciplinary systems that may influence a child’s development. Biological Components of Anxiety Researchers suggest the most significant influence regarding anxiety risk is genetic predisposition (Murray et al., 2009). Genetic factors include neuropsychological, biological, and 8 hereditary components, which may lead to different physiological responses to a threat or stress (Jacob et al., 2011; Murray et al., 2009). A large body of research suggests that genetics play a crucial role in anxiety inheritability. Genetic components such as abnormalities in temperament, inheritability, hormones, and gender differences may impact the risk for anxiety. Temperament involves inborn characteristics and mannerisms, which may be passed along and affect emotional responses (Jacob et al., 2011; Narmandakh et al., 2021). A child may naturally exhibit a slow-to-warm-up or shy attitude, which may present as an anxiety-related behavior. Inherited traits may also be passed down to children. Specifically, children with parents with anxiety are more likely to exhibit anxious behaviors (Murray et al., 2009). Hormonal changes also posit some challenges to problem behaviors related to anxiety. Children may experience increased appetite, mood swings, and withdrawal throughout their development which can contribute to the symptomology of an anxiety disorder (Jacob et al., 2011; Narmandakh et al., 2021). Lastly, in terms of gender differences, anxiety is reported to be more prevalent among girls than boys (Narmandakh et al., 2021). In terms of neuropsychological components, the amygdala, located in the prefrontal cortical region of the brain, is an area that is often associated with behavioral inhibition and reticence (Bertocci et al., 2014; Sesso et al., 2021). Activation in the amygdala, thalamus, hypothalamus, and brainstem may initiate an anxiety-related response (e.g., freeze response). Also, the frontal lobe is associated with behavioral inhibition; specifically, the prefrontal cortex is highly related to emotional responses. Jacob et al., (2011) noted that vagal tone impacts emotional regulation. The vagal tone balances the sympathetic with the parasympathetic nervous system. Thus, people born with lower vagal tones tend to act out more emotionally than people 9 born with average vagal tones. Overall, chemical imbalances within the nervous system may impact the intensity and severity of anxiety symptoms. Psychological Components of Anxiety Some psychological factors may also affect a child’s mental health. (Mooney-Doyle & Lindley, 2020). Physical health is another component of anxiety. Researchers found that family relations and coping skills were among the common psychological components of anxiety. Parental relationships can impact anxiety (Shepherd et al., 2018). On the one hand, parents who prohibit emotional expression may forge an internalized response. On the other hand, parents who display a supportive role in their child’s emotional behaviors may encourage a more positive response. Additionally, parents who model non-anxious behaviors are reported to have less impact on a child’s anxiety. Lack of coping skills can also impact a child’s ability to recover from setbacks such as unexpected changes in a schedule (Helverschou et al., 2019). Social Components of Anxiety Social factors of anxiety include the environmental influences on a child’s life (Murray et al., 2009). Many life events or circumstances can trigger a child’s anxiety response. The COVID- 19 pandemic is a recent and ongoing event that has induced widespread anxiety responses in many school-age children. For example, young students have experienced the death of loved ones, transitioned to multiple delivery modes of instruction, and were isolated from their peers (Brophy‐Herb et al., 2022). The adverse effects of the pandemic continue to impact school-age children as they face the multifaceted challenges of their educational pursuit, social immersion, and acquisition/reintroduction of social etiquette after nearly three years. Other stressful life events may include socioeconomic status (SES), physical and sexual abuse, and other traumas, which may have long-lasting psychological and neurochemical-altering agents (Narmandakh et 10 al., 2021). Negative childhood experiences such as child maltreatment can cause psychological problems (Quenneville et al., 2020). Evidence-based Anxiety Treatment To prevent agonizing and dysfunctional long-term outcomes, researchers advocate for early interventions to address mental health needs (Narmandakh et al., 2021). Cognitive Behavioral Therapy (CBT), Coordinated Anxiety Learning and Management (CALM), Acceptance and Commitment Therapy (ACT), and the Modular Approach to Therapy for Children with Anxiety, Depression, Trauma, and Conduct disorders (MATCH-ADTC) are several evidence-based interventions aimed at treating anxiety or anxiety-related symptoms on (Lucassen et al., 2015; Roy-Byrne et al., 2010; Wampold et al., 2011). Although there are valid treatments for childhood anxiety, for certain subgroups of children it may be more difficult to detect and treat anxiety. Children with autism are one such group. Autism Spectrum Disorder Autism spectrum disorder (ASD) is a neurodevelopmental disorder distinguished by poor social communication and interpersonal skills, hyper-focused interests, sensory stimulation, and restrictive and repetitive behaviors (Preece & Howley, 2018). Clinical Diagnosis According to the Diagnostic and Statistical Manual of Mental Disorders Fifth Edition Text Revision (DSM-5-TR), criteria for ASD may be met if individuals exhibit the following characteristics: “deficits in social communication and social interaction (i.e., deficits in social-emotional reciprocity, nonverbal communicative behaviors, and developing, maintaining, and understanding relationships), and restrictive and repetitive patterns of behavior, interests, 11 and activities (i.e., stereotyped or repetitive motor movement, use of objects or speech; insistence of sameness or adherence to routines; highly restricted, fixated interests which are abnormal in intensity or focus; and hyper-or hypo-reactivity to sensory input or unusual interests). These behaviors must be present from a younger developmental age (e.g., prior to three years of age), and must cause a clinically significant impairment in social, occupational, or other important areas of current functioning. In addition, the behaviors cannot be better explained by intellectual developmental disorder [i.e., intellectual disability] or global developmental delay” (American Psychiatric Association, 2022). A qualified professional may complete an evaluation and use the DSM-5 as a manual for diagnostic classification of ASD; however, public schools are not obligated by law to recognize an external diagnosis of autism as a disability that requires special services. School Classification While most schools are not responsible for providing a diagnosis of ASD, they reserve the right to provide services to students under the category of ASD so long as they meet IDEA’s criteria as a student with a disability. Students do not need to have an outside diagnosis of ASD to be recognized as a student with ASD in schools. In order to receive services for a disability in schools, IDEA states that schools must first identify a student as having a disability. IDEA provides the following definition for a child with a disability: “a child evaluated in accordance with §300.304 through 300.311 as having mental retardation, a hearing impairment (including deafness), a speech or language impairment, a visual impairment (including blindness), a serious emotional disturbance, an orthopedic impairment, autism, traumatic brain injury, and other health impairment, a Specific 12 Learning Disability, deaf-blindness, or multiple disabilities, and who, by reason thereof, needs special education and related services.” Although ASD is included in this definition, not all students with a diagnosis of ASD are recognized as children with a disability requiring services. According to IDEA (2004), autism is defined as “a developmental disability significantly affecting verbal and nonverbal communication and social interaction, generally evident before age three, that adversely affects a child’s educational performance. Other characteristics often associated with autism are engagement in repetitive activities and stereotyped movements, resistance to environmental change or change in daily routines, and unusual responses to sensory experiences… Autism does not apply if a child’s educational performance is adversely affected primarily because the child has an emotional disturbance” IDEA (2004) places an emphasis on academic impact, which is one of the reasons an outside evaluation and diagnosis does not always guarantee services in schools. There must be an educational impact on children in which an ASD classification allows them to better access the curriculum. In addition to this definition, it must be determined by the school that the social impairment and restrictive/ repetitive behaviors significantly impedes a child’s ability to access the curriculum: “If it is determined, through an appropriate evaluation under §300.304 through §300.311, that a child has one of the [other IDEA] disabilities, but only needs a related service and not special education, the child is not a child with a disability under this part.” In other words, outside evaluations do not generally guarantee services in schools. Some districts may place more strict criteria, but in most cases, it is not necessary for students to have received 13 a prior diagnosis of ASD so long as there is an educational impact which necessitates access to specially designed instruction. In general, ASD involves complexities in the brain, which may impact cognitive levels and ease of learning. ASD symptoms differ from many other disorders in that they exist on a spectrum because the symptoms of autism vary by individual. For example, although one person with ASD may experience poor communication skills, high sensory needs, and multiple restrictive and repetitive behaviors, another person with ASD may struggle with understanding appropriate social boundaries and exhibit few sensory needs. Despite these differences, many individuals with ASD generally tend to experience some level of difficulty in social interactions due to neurological complexities coupled with their attentiveness to details and difficulty with perspective-taking and change (Bauer et al., 2022). Because ASD symptoms may emerge at a young age, need for treatment can be detected as early as two-or-three- years of age (Yi et al., 2020). ASD Treatment and Services A few evidence-based treatments have been used by school psychologists, behavior analysts, and behavior therapists to treat some of the most prevalent and outstanding symptoms of ASD. In a key word search in ProQuest, google scholar, and a university library data base search, the key words “autism spectrum disorder AND evidence-based treatments” brought up several treatments used with children with ASD including applied behavior analysis, discrete trial training, social stories, and intensive language/communication skill building (Hungate et al., 2017; Yu et al., 2021; Virués-Ortega, 2010). In addition, organizations such as Autism Speaks, the National Autism Center (NAC) and International Society for Autism Research (ISAR) 14 provide families and important shareholders with resources that aid in the awareness, identification, and treatment for children with ASD (Hungate et al, 2017). Depending on the need for services, some ASD services are delivered in public schools for free as a part of a Fair and Appropriate Public Education (FAPE). Children with symptoms of ASD may qualify for specially designed instruction if there is evidence that their symptoms interfere with their ability to access the curriculum. They may receive special education supports and services to target goals in social communication, interpersonal, independent living, and academic skills through an individualized education program (IEP) in a special education classroom. Goals on the IEP are typically changed (e.g., when data suggest little-to-no progress), modified (e.g., when data suggest adequate progress), or removed (e.g., when data suggest achieved goals) based on a child’s progress or lack thereof. Some districts also employ behavior analysts to intervene and provide direct one-on-one services to students who require intensive assistance. The Centers for Disease Control and Prevention (CDC) reported that one in every 54 children are diagnosed with ASD (CDC, 2022). The numbers are expected to increase as communities become more aware of diagnostic characteristics (Maenner et al., 2020). The increase in ASD diagnoses necessitates additional resources and behavioral supports for both families and persons with ASD. Unfortunately, research suggests that many members of the ASD community do not have access to educational, social welfare, and health-related resources due to issues on the systems level. Families may face a lengthy waitlist for services before (i.e., evaluation) and after (i.e., treatment) a diagnosis. Services can be expensive and may not always be covered by insurance. Families have also reported fatigue concerning the process of accessing ASD specialists. Despite the various type of evidence-based interventions, due to the 15 complexities involved with accessible resources, many families have expressed dissatisfaction with the level of care provided following a diagnosis of ASD (Yi et al., 2020). It is important to note the need for follow-up regarding progress monitoring of symptoms. Annual pediatrician check-ups are commonplace for families with health insurance, transportation access, and the monetary means to pay for an appointment. However, researchers have found that annual doctor check-ups typically consist of broad screeners specific to developmental milestones and general concerns. Additionally, parents are limited to a particular time frame for their appointment, which may restrict the breadth of conversation and accurate explanation of symptoms. Vague measures, time constraints, and difficulty discerning symptoms may impact health care providers’ ability to recommend appropriate service referrals. (Yi et al., 2020). Anxiety and ASD Anxiety-related concerns with ASD may be challenging for parents to detect because of the complex nature of ASD. The concerns of parents include problematic recurring symptoms, skill regression, and emerging symptoms. Children born with neurological disorders, such as ASD, may have a specific set of needs that may make problematic behaviors difficult to recognize, manage, and/or treat. Thus, as children develop, behaviors of concern may raise questions about comorbidity or co-existence with other disabilities (e.g., Intellectual Disability [ID], Attention-Deficit/Hyperactivity Disorder [ADHD], Obsessive Compulsive Disorder [OCD], Post-traumatic Stress Disorder [PTSD], Generalized Anxiety Disorder [GAD]; (Lau et al., 2020). Of note is the comorbidity of ASD and anxiety. Researchers found that roughly 40% of children with ASD present with an anxiety disorder (Preece & Howley, 2018). Preece and Howley (2018) added that risk for anxiety among children with ASD is nearly three times the 16 risk of anxiety for neurotypical children (Preece & Howley, 2018). This study will focus on the overlapping symptoms of ASD and anxiety by teaching coping skills to improve students’ emotional well-being and success in school. The overlap in anxiety and ASD symptoms makes it difficult for researchers to distinguish autism-related anxiety from general symptoms of ASD (Preece & Howley, 2018). Difficulties with social skills and/or communication can present similarly with anxiety. Longitudinal research identified a transactional relationship between symptoms of autism (e.g., social communication) and anxiety. Researchers found that social communication difficulties may present greater risk for social anxiety for children (White et al., 2018). In terms of reinforcement history, it is important to note how certain social behaviors have been maintained amongst children with ASD. For instance, a child with autism may avoid social situations because such situations are not reinforcing, but punishing, decreasing the likelihood of their interactions with others in the future. A child with autism may also avoid social situations because social situations are anxiety-provoking due to a history of negative social experiences or poor development of social skills. In addition, restrictive and repetitive behaviors can also impair a child’s ability to cope effectively with a challenging setback. Anxiety triggers, or situations that provoke an anxiety response, may differ between children with and without ASD. Within the community of individuals diagnosed with an anxiety disorder, it may be typical to experience anxiety in social situations (e.g., social anxiety), in test-taking environments (e.g., generalized anxiety), and in fearful situations (e.g., phobia). However, children with ASD may have idiosyncratic fears that are less common (e.g., green food, water sprouting from a shower head; Lau et al., 2020). In addition, Magiati et al., (2016) noted that some children with ASD may have anxiety-related triggers from sensory issues (e.g., bright lights, loud sounds). Unlike typically 17 developing children with anxiety, anxiety may also result from a change in routine for individuals with ASD. Many children must adhere to a specific schedule. While there may be many similarities in symptoms of autism and anxiety, there some differences in the way anxiety can be presented for children with ASD. On the one hand, children with ASD may engage in stereotyped behaviors (e.g., flapping hands) because of some anxiety-provoking situations. In contrast, neurotypically-developed children may exhibit harder- to-detect symptoms (e.g., withdrawal, silence) when they experience anxiety. In general, children with ASD are more likely to engage in restricted and repetitive behaviors than neurotypical children. Problems may arise if a child’s restricted and repetitive behaviors can impact their safety (e.g., head rocking, self-injurious behaviors). Researchers suggest that children with autism with sensory processing difficulties may be at greater risk for severe anxiety-related responses than children with less sensory-loaded needs (Lau et al., 2020). In addition, individuals with ASD have an estimated 11-85% chance of symptoms worsening over time relative to neurotypical children (Preece & Howley, 2018). Developmental Model of Understanding Anxiety in ASD In addition to the biological, psychological, and social factors involved with anxiety mentioned in a previous section, children with ASD may have different mechanisms for their anxiety. White and colleagues (2014) suggested that symptoms of ASD are commonly associated with anxiety because of the overlap with emotional regulation (ER) impairments. Individuals who exhibit ER can manage and control emotions associated with events and situations. In contrast, anxiety is a state of distress; commonly associated with emotional dysregulation (ED). It is not uncommon for children with ASD to display weak ER skills, and thus, trigger a strong physiological or behavioral response. 18 Physiologically, individuals with ASD are reported to experience elevated levels of arousal. This suggests that the amygdala, thalamus, and parietal lobes are more frequently activated relative to neurotypical children. When the sympathetic nervous system is stimulated, anxiety responses (e.g., flight, freeze) are more likely to ensue. Regarding socio-cognitive components, children with ASD may not correctly identify contextual situations: They may struggle to demonstrate perspective taking, interpret facial expressions, understand subtle cues/sarcasm, express their emotions, and maintain eye contact. Failure to appropriately respond to social contexts can lead to negative reactions, such as withdrawal, a common symptom of ASD. Unlike neurotypical children who may demonstrate an ability to develop emotional recognition, neurodiverse children may have trouble in developing those ER skills which may lead to greater risk of anxiety (White et al., 2014). Cognitive Behavioral Therapy Cognitive behavioral therapy (CBT) is a form of treatment that aims to restructure thinking patterns for people who experience maladaptive thoughts. CBT comprises of a cognitive triangle that primarily focuses on the relationship of one’s thoughts, feelings, and actions. Within the framework of CBT, clinicians emphasize that situations may provoke certain thoughts, which could bring about specific feelings, which may impact our behaviors. In general, CBT requires a level of advanced thinking. According to Lickel et al. (2012), CBT not only requires the skill of being able to recognize emotions, but also to correctly identify and discriminate between emotions. This typically will require the use of verbal (i.e., expressive and receptive) language skills. Thus, in addition to cognitive components, CBT also involves linguistic prerequisite skills. In order for treatment to be effective, a learner must obtain an understanding of the language used to make meaning of the language used in therapy (receptive skills). Likewise, CBT may 19 also require a participant to express their understanding as a baseline, and progress monitoring tool to determine advancement of skills and progress towards goals (Bhide & Chakraborty, 2020). This includes the ability to self-reflect, express awareness of their own thoughts and beliefs so that they could acknowledge and challenge some of their unhelpful thinking as a necessary component of CBT. Research on Therapy for Students with ASD Researchers have studied the effects of interventions on children with autism for many years. For example, Ben-Itzchak and Zachor (2007) discovered autistic children with high expressive and receptive abilities and high cognitive levels made significant progress in reaching their behavioral goals. A controlled trial study invited fully verbal and vocal autistic children with average IQ scores to participate in CBT treatment. Those students experienced significant decreases in anxiety symptoms when provided with CBT treatment (Chalfant et al., 2012). Findings from a long-term study also followed up on the anxiety symptoms of autistic individuals revealed that students who were able to verbally participate in CBT continued to experience a reduction in anxiety symptoms after one year of treatment (White et al., 2015). Other researchers modified CBT curricula to meet the unique needs of children with autism who presented with anxiety and indicated positive outcomes and a reduction in anxiety symptoms among autistic children who required minimal supports (Reaven et al., 2012). Modular Therapy and ASD A modular approach to treatment is a comprehensive method of incorporating various overlapping effective strategies (Bovin et al., 2016). Assessing the intensity of a student’s feelings, exposure therapy, and goal setting are some of the elements included in sessions. MATCH-ADTC is a CBT treatment that includes several evidence-based concepts used in CBT 20 into one modular manual. It incorporates cognitive restructuring by gradually exposing children to fear-inducing situations so that they can more easily overcome their fears. School psychologists are among the qualified professionals to use MATCH-ADTC to treat anxiety, depression, trauma, and conduct disorders for children 7-14 years of age. It is possible that a modular approach may be appropriate for children with ASD who display anxious behaviors because the model incorporates some of the most effective techniques to treat anxiety. Children with autism may struggle to adhere to changes in routine, and students with autism typically thrive in a more structured setting because it provides a sense of predictability for the child and prepares them for what to expect. The MATCH-ADTC is a structured manual that provides a typical routine for each session. Each session begins with a rating on the fear ladder, a review of what was discussed the last session, a review of homework, and then didactics for the new skill. To further structure each session, the therapist can provide a checklist of what to expect during the session that the student can mark as they progress throughout the session. Typically, IEPs for students with ASD include academic and behavioral goals which sometimes include mental health goals (e.g., for internalizing problems). This is especially important as mental health goals can support increased access to educational progress. There is evidence to suggest that CBT has not only been used with children with autism (Kalvin, 2021; Scattone & Mong, 2013; Spain & Happe, 2019), but also other forms of CBT (e.g., music therapy) have been found effective for children with ASD (Kern & Humpal, 2013; Ruiz et al., 2023). In addition, techniques commonly used in CBT sessions (e.g., breathing techniques, mindfulness) have been helpful for children with disabilities to improve their quality of life 21 (Drüsedau, 2021; Ridderinkhof, 2021) and decrease negative feelings and rumination (de Bruin, 2015; Ridderinkhof, 2021). Given the effective nature of modular therapy and the research to support the success of CBT with autistic youth, there should be more inclusive efforts to provide modular treatments for the ASD community. In doing so, it is important to consider appropriate modifications (i.e., more visuals, visual schedules, explanations, and social stories) to ensure understanding of treatment. There are also no known successfully implemented anxiety interventions involving children with ASD that have a moderate, severe, or profound diagnosis of an Intellectual Disability (ID). Students with a moderate, severe, or profound ID may lack the cognitive or verbal skills to understand the intricate components of emotional recognition and awareness (which include perspective taking, identification of emotions, understanding of nonverbal cues, etc.), as well as the adaptive skills to apply and practice the skills in their life. Therefore, instead of using traditional CBT, individuals with intellectual disabilities may benefit from other behavior-focused interventions which address targeted skills that are helpful for building their independence and flexible thinking (e.g., communicating a need in an appropriate manner, learning how to waiting, accepting “no”, coping from a setback). For individuals without ID, CBT may be more in line with their cognitive and verbal abilities. Because adolescents also face a greater risk of anxiety-related behaviors (Hanchon & Fernald, 2013), it is expected that school age students with ASD and mild or no ID may benefit from modular-based anxiety treatment. Purpose of this Study Traditionally, most elementary and secondary level IEPs include autism-related acquisition, maintenance, and generalization interventions including those geared towards social- communication, daily living, and behavior reduction. Program effectiveness is typically 22 determined by the child’s ability to apply skills, achieve goals, and progressively acquire advanced skills. Although those outcome measures may be effective in evaluating students’ success with interventions, they may not address other symptoms that are commonly associated with social challenges (e.g., internalizing behaviors). Although mental health support for the autistic community is growing, research still suggests that there is a need for continued resources to identify and treat school-age youth with ASD who are at-risk for anxiety (Hungate et al., 2017). Likewise, there is evidence that a modular therapy approach may be effective with this group of students (Ordaz et al., 2018). However, this approach has not been studied for use with students with ASD. Because ASD is a social communication disorder, anxiety symptoms are likely to emerge more frequently for students with ASD, given the social demands of the school climate. Thus, students with ASD with a dual diagnosis of anxiety are more likely to become disengaged in school, experience truancy, refuse tasks, act out aggressively, and/or drop out of school (Preece & Howley, 2018; Jackson et al. 2017). The purpose of this study was to determine the perceived effectiveness and usefulness of modular therapy for treating anxiety for school-age children with ASD. Qualitative and quantitative data were used to determine the effectiveness of the treatment. Qualitative data was tracked biweekly during baseline and throughout the intervention. Quantitative data was also obtained to better understand each participant’s opinion about the treatment, as well as to test their knowledge after having completed the intervention. Parents and teachers were also given pre- and post-intervention surveys to identify their perceptions on the usefulness of the intervention, as well as their likelihood to recommend it to other parents and teachers. This pilot study addressed the following questions: 23 1) To what extent do perceived levels of anxiety decrease for school age students with ASD while participating a modified version of the MATCH-A curriculum? 2) To what extent do school age students perceive the usefulness of this intervention in their lives? 3) How do the parents and teachers rate levels of satisfaction regarding modular therapy treatment and outcomes for these students? CHAPTER 2: METHOD Setting School age students from a school district in a southeastern area of the United States were recruited to participate in this study. The primary investigator (PI) worked in the school district as a Graduate Assistant on a school-based mental health grant initiative. The PI was a trained school psychologist and was qualified to implement the intervention as a therapist delivering MATCH-A. Students aged 8-16 years with a medical diagnosis of ASD, and/or with an IEP under the IDEA category of autism, were invited to participate in this study. The sessions took place in an open/available room in the child’s school. As a part of this research, each session lasted approximately 30-45 minutes. The treatment took place during their intervention period or “specials” time (e.g., library, art, music, technology). Participants Recruitment To determine the risk for anxiety, students were nominated by the county mental health team. To provide some context of what anxiety may look like, the Zones of Regulation definition was used. The county adopted Zones of Regulation as a district-wide, Tier 1 intervention to capture students at-risk for externalizing or internalizing behaviors. Anxious behaviors were described to school personnel as behaviors in the “yellow zone.” The yellow zone is defined as the moment when people’s “internal state starts to elevate,” and there is a need to “regulate to manage energy.” In this zone, individuals may experience feelings that include stress, worry, excitement, frustration, nervousness, and confusion (Kuypers, 2011). The district-wide mental health team derived a list of students with autism who exhibited frequent anxiety-related behaviors using MTSS documentation. These students were previously discussed in Tier 2 or Tier 3 meetings as “at-risk” due to behavioral observation (e.g., crying 25 after drop-off), student self-report (e.g., reported stomach pains/headaches, complaints about bad things happening, self-reported data from universal screeners), and/or other concerns reported by at least one teacher (e.g., student appeared nervous, seemed to worry about what others think). Once students were identified, the child and parent of the child completed research-based anxiety screeners to verify the fit for treatment. Inclusion Criteria Fully verbal students in the age range of 8-16 years with a diagnosis of ASD, or an IEP under the IDEA category of autism, were eligible to participate in this study. In addition, individuals whose Intelligence Quotient (IQ) scores fell within 1.5 standard deviations from the average IQ (i.e., IQ score of at least 77 or higher) were invited to participate. Specific criteria surrounding cognitive and verbal skills were determined based on what the research literature considers to be necessary components to understand and benefit from CBT (Likel et al., 2012). Eligible students needed to obtain a cutoff score of 25 on the anxiety symptom screener (SCARED) or a cut-off score of 24 from the SCAS-C/SCAS-P to receive one-on-one treatment in this study. Eligible students were also able to have other co-occurring diagnoses (e.g., Attention-Deficit/Hyperactivity Disorder) so long as the conditions did not impair their ability to comprehend higher-level thinking processes associated with CBT approaches. Exclusion Criteria The MATCH-Anxiety module is aimed to support the mental health of students by teaching them about anxiety, how their thinking patterns can change, and by providing coping strategies for when they feel anxious; however, deficits in cognitive and adaptive functioning could make the intervention difficult to understand. CBT emphasizes the use of metacognition, self-reflection, verbal ability, memory skills, and reasoning (Likel et al., 2012). In efforts to 26 avoid unnecessary harm, this study required students to obtain adaptive skills that were commensurate to cognitive functioning and suggestive of their ability to successfully engage in this level of CBT treatment. Therefore, students who did not demonstrate an ability to verbalize, assent, comprehend instructions, or engage in self-evaluation of their thinking patterns for CBT were excluded from this study. Students with a diagnosis of an Intellectual Disability (based on cognitive functioning and adaptive behavior deficits) were not included in the sample. Final Sample A total of six students were recruited to participate in this study. Among the individuals recruited were four elementary students, one middle school student, and one high school student. Although all six students were eligible based on diagnosis, parent ratings, and child assent, three students were not selected to move forward with the treatment due to barriers to intervention delivery. The parent of one elementary student required the child’s registered behavior technician to join in the sessions; however, having a third party in the intervention room posed a risk to internal validity, as a decrease in perceived anxiety levels may have been impacted by the presence of a familiar adult. A middle school student did not participate in the study because he was unable to acknowledge areas for improvement or determine treatment goals for himself. From his perspective, he was not impacted by any fears or worries, and therefore, was not an eligible candidate for treatment. One elementary school student did not move forward in the study because he exhibited hyperactive and externalizing behaviors that resulted in multiple school suspensions and early dismissals that significantly impacted attendance and flow of the sessions. He struggled to attend to instructions within the therapeutic environment and appeared to better benefit from emotional regulation training. 27 Participants were recruited on a rolling basis (i.e., students were invited to participate throughout the school year and there was no specified cut off day until the study was complete). The study was complete after the minimum number of participants required for this study participated in pre-and post-intervention and completed pre-and post-intervention assessments. Ultimately, three students proceeded with the intervention and completed the pre-and post- intervention assessments. It should be noted that after receiving several MATCH-A interventions, one student noted that his anxiety significantly decreased and opted to graduate from the treatment without the need for exposure therapy (which was covered in the last 2 sessions). Given the interventions he received and completion of the pre-and post-intervention assessments, his data was interpretable as he completed the minimum requirements for this study. The participants’ personal information was protected during this study. For research purposes, pseudonyms were used to protect the participant’s identities. Co-occurring conditions and ages were included to provide context. Measures/Dependent Variables Anxiety Screeners To identify potential fit for intervention, two measures were used to capture pre- and post-intervention symptoms of anxiety. The child and parent individually completed two screeners related to anxiety. Perceived anxiety symptoms were measured using parent and self- report that identified symptoms related to obsessive-compulsive problems, separation anxiety, social phobia, panic disorder, agoraphobia, generalized anxiety/overanxious symptoms, fears of physical injury, and other atypical fears. The Screen for Child Anxiety Related Emotional Disorders (SCARED) is an anxiety screening tool for youth ages 6-18 years old (See Appendices A and B). The SCARED is a 41- 28 item Likert scale with moderately high reliability (Cronbach’s alpha= .90). It comprises of statements related to five categories of anxiety: general anxiety disorder, separation anxiety disorder, panic disorder, social phobia, and school avoidance/phobia which correspond to the following responses: 0= “not true/hardly ever true”, 1= “somewhat true/sometimes true”, and 2= “very/often true” (Birmaher et al., 1999). The SCARED was normed on the general population; however, researchers have used this measure on children with ASD. Schiltz and Magnus (2021) recommend that if the SCARED is used for autistic children, that an additional follow-up measure is supplemented to capture autism-related anxiety (e.g., atypical fears). In addition to the SCARED, the Spence Children’s Anxiety Scale (SCAS) is a research- based screener that was used to assess anxiety levels that may be related to ASD for youth ages 7-19 years (Carruthers, 2018; Toscano et al., 2020). The SCAS is unique from other anxiety measures in that it focuses on children within the general population as well as those in the ASD community. The SCAS measures were developed by Susan Spence in 1997 for the child (SCAS- C; see Appendix C) and in 1998 for the parent version (SCAS-P; see Appendix D). The SCAS is a Likert scale that included 44 items with options that range based on frequency of symptoms: 0 = never, 1 = sometimes, 2 = often, 3 = always. It also included one open-ended question to give some context to potential autism-related fears (i.e., “Is there anything else that you/your child is afraid of”). Although there were no reported reverse coded items, there were six items that were positively worded which were eliminated from the scoring. The following items were not included in scoring: 11 (I am popular among other kids my own age), 17 (I like myself),26 (I am a good person), 31 (I feel happy), 38 (I like myself), and 43 (I am proud of my schoolwork). Higher scores indicated increased likelihood of an anxiety diagnosis consistent with the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV), and the 29 cutoff score was 24. The SCAS’ documented psychometric properties included a split-half reliability of 0.92 and moderate reliability overall (Cronbach’s alpha= .80). The SCAS is also correlated (r= 0.73) with the Revised Children’s Manifest Anxiety Scale (RCMAS; Spence, 1998; Toscano et al., 2020). A reliable change index (RCI) was used to determine the any clinical significance of the pre-intervention ant post- intervention SCARED ratings. The RCI was calculated because this study’s sample size was too small to generate a reliable effect size that could be representative of the general population. Therefore, the standard error of measurement (standard deviation) of each composite of the SCARED was used to calculate the reliability change index using a 90% confidence interval (z = 1.645). For purposes of this study, a reliability change index was considered “stable” if the RCI that was not clinically significant, but still resulted in a notable decrease in pre-intervention and post-intervention scores. An accelerating RCI was considered to be an RCI score that was not clinically significant, but that emerged as an increase in pre- intervention and post-intervention scores. Intervention Usefulness Survey The participants completed a pre-and post-intervention survey to determine their perceived usefulness of the intervention. The survey was a six Likert scale questions with options ranging from 0= not at all, 1= maybe/unsure, 2= kind of, and 3= definitely to understand their perspective and their perceptions of its use. A score of three was generally the most desired response for all questions except for one, which addressed current feelings of anxiety (in which case the desired response would be as close to 0 (or not at all) as possible). 30 Parent/Teacher Intervention Ratings While the child’s SCARED and SCAS ratings were used as pre-intervention data to identify perceived anxiety levels and fit for treatment prior to the start of the intervention, parents and teachers completed the Therapy Evaluation Inventory (TEI) to determine the perceived usefulness and acceptability of the treatment prior to intervention as well as after the intervention was complete (See Appendix F). The TEI is a 6-item scale designed to determine acceptability of treatment. It contains high internal reliability overall (Cronbach’s alpha= .96) and higher scores indicate greater acceptability (M= 94.90, SD= 21.76; Newton, Nabeyama, & Sturmey, 2007). The TEI addresses an individual’s thoughts of what may happen during the course of treatment. Items include: “How logical does this treatment to you seem?”), and responses range from 1 (not at all logical) to 9 (very logical); “How successful the treatment may be in improving quality of functioning?” and responses range from 1 (not at all useful) to 9 (very useful); “How confident would you be in recommending this treatment to a friend who experiences similar problems?” and responses range from 1 (not at all confident) to 9 (very confident); and “By the end of the course, how much improvement do you think will occur?” with 10 responses that range from 0% to 100%. This scale also addresses how they feel about the treatment. These items include the following: “How do you feel the course will help with functioning?” and responses range from 1 (not at all) to 9 (very much); and “By the end of the course, how much improvement in functioning do you feel will occur?” with 10 responses that range from 0% to 100%. Both parents and teachers completed these rating scales prior to treatment. The TEI is scored by obtaining the mean score of the items (i.e., adding all the items as a score of one, two, three, four, fix, six, seven, eight, nine, or ten; and dividing by six; Newton & Sturmey, 2004). 31 Behavioral Intervention Rating Scale (BIRS) was used to assess their overall satisfaction with the treatment by measuring acceptability, effectiveness, and time of effect. The BIRS is a 24- item rating scale that has high reliability (Cronbach’s alpha= .97; Elliott & Treuting, 1991). The BIRS is a likert scale that includes six response options: “strongly disagree”, “disagree”, “slightly disagree”, “slightly agree”, “agree”, and “strongly agree”. The BIRS was scored by summing up all the items (Carter, 2009). Procedure Baseline Data & Activities After the students completed the entire SCARED screener to identify anxiety levels, areas with the highest scores were monitored over time. For example, if a student scored highest in the area of separation anxiety, the student completed SCARED specific questions regarding separation anxiety. This shortened version of the SCARED was delivered twice a week during baseline and intervention. Students completed an anxiety fear ladder rating each week to determine their overall fear levels for the week. Both forms of data were collected to better identify a stabilized baseline (e.g., a student may have a particularly challenging week that impacts their overall anxiety level, but that may not impact their fears related to social anxiety which would be expected to be scored consistently). Nonconcurrent baseline durations were determined prior to this study and were pre-selected based on random assignment (Christ, 2007). Based on the selection, the first participant was randomly selected to received seven sessions of baseline; the second participant was randomly selected to receive five sessions in baseline, and the third participant was randomly selected to receive six sessions in baseline. Rapport was established between the student and the therapist in the first few sessions (titled Getting Acquainted-Anxiety) prior to beginning the intervention. Different ice breakers 32 were tailored to set the ground for a strong therapeutic relationship. Sessions started out with card games (e.g., Uno Flip or Phase 10), drawing, or other games (e.g., Tic Tac Toe, Connect Four). Other forms of rapport building included a box of fidgets and sensory items. Preference assessments were completed to determine the client’s preferred fidgets. They chose their favorite item(s), and any other preferred items. The students were given about two to five minutes to play with the item(s) and/or direct play with the therapist. During play, the therapist was able to learn more about why they chose the toy, what they felt while playing with the toy, and what they liked about it. This was helpful with understanding why certain objects may have brought comfort to the child as the item was later used during exposure therapy. In addition, the therapist primed the students by discussing feelings and emotions each session leading up to the intervention. The students gave examples about times in their week when they experienced various emotions (e.g., excited, happy, sad, nervous). The therapist also prepared the students for upcoming sessions by discussing the desired intervention goals. The fear thermometer was introduced and was also used weekly to teach the students how to rate their fears during treatment and to monitor progress with self-reported levels of anxiety. MATCH-ADTC Intervention The independent variable was the MATCH-Anxiety (MATCH-A) modules, which were delivered across eight sessions. The anxiety modules included rapport building, establishing a baseline level of worries using a “fear ladder,” psychoeducation about anxiety/didactics that included cognitive restructuring and application techniques (i.e., practicing and maintaining) for coping strategies, in-vivo (live) exposure, and a concluding session. The dependent variable was the perceived levels of anxiety which were measured during each session using the anxiety thermometer. Handouts (provided in the MATCH- ADTC book) were used throughout the 33 intervention. Although the MATCH-ADTC was not developed for school-age children with ASD, modifications for this study were included. Specifically, additional materials were made available to tailor to the unique needs of the students (e.g., a visual schedule for the agenda, more visuals, social stories). In addition, students were able to play with a variety of sensory items throughout the session as well as during exposure therapy. For each session, the therapist shared a schedule of events, checked in about recent updates, reviewed previously learned material, checked the assignments, discussed new content, and ended on a positive note. During the first session of this intervention (titled Fear Ladder), the student and therapist discussed ten fearful situations, sensations, or obsessions that ranged from minimal to extreme fear using ratings from the anxiety screeners as a frame of reference. For example, if the child rated a high-level fear in separation anxiety on the SCARED, a possible fear scenario may include being in a room alone. If the child indicated a fear of a ticking noise on the SCAS-C, a possible fear scenario may include being in a loud room with an analog clock. They developed a list of fearful scenarios to place on the fear ladder worksheet. The fear thermometer was used to help children differentiate levels of fear. A visual schedule was created to show the routine of events for each session. During the second session (titled Learning about Anxiety), the therapist and student discussed advantages and disadvantages of anxiety. They discussed different examples of how to know when there is a real threat as opposed to a perceived threat. A social story was created to encourage the child to relate to the content, be a part of the narrative, provide context for what the treatment would be like, and give hope for the outcomes. Two of the three participants received a social story; however, the high school participant preferred to talk rather than use social stories. Following this session with the children, parents also met with the therapist to 34 discuss anxiety in an in-person one-on-one session for approximately one hour. In this session, parents were given psychoeducation about anxiety, how it may look, reasons why it may happen, and evidence-based strategies for handling anxiety at home. Parents were given an update on their child’s goals and progress in the session. Helpful background information was shared during this session which helped give context to some of the students’ anxiety. Parent sessions lasted approximately one and a half hours. Depending on preference, a hard or electronic copy of anxiety-related resources were shared with each parent towards the end of the session. The third session (titled Learning to Relax) taught strategies about coping that they could try at home and school to prevent or minimize intrusive anxious thoughts. The participants took home a copy of the handout from the MATCH ADTC book to remember skills and practice them. Each student ranked the items that would be most helpful for them on a scale of 1-3. Students also used some of their preferred items in the sensory box to discuss which ones were most helpful for them. Participants discussed why the sensory item was useful and talked about other uses for the fidget in similar situations of fear or worry. The next module was split up into two sessions (fourth and fifth sessions titled Cognitive S T O P). The purpose of these lessons was to teach the student ways to recognize and address the feelings associated with fear. When Scared, a student may feel nervous, afraid, worried, and may experience a variety of symptoms (e.g., headache, stomachache). The student may also have many different Thoughts of what may happen (e.g., good or bad). Other thoughts may positively redirect the child to consider a favorable outcome. Praise is the final aspect which encourages the child to be proud of themselves for addressing the issue appropriately. A visually loaded worksheet from the MATCH handbook was provided for this session. Additional modifications were not required for this session. Preparation for the conclusion of services was provided. 35 During the sixth session (titled Practicing), the therapist and participant transitioned from didactics to in-vivo exposure. During this session, the participant was exposed to a fearful situation while engaging in the previously learned techniques. The participants used their preferred toys/sensory items from session one, social stories from session two and/or visual aids from sessions three through five for this session. Participants practiced lower-level fears and were heavily reinforced for completing the tasks. Participants rated their fears much lower after having completed the task while practicing the STOP techniques, coping skill, and their fidget toys. The participants were willing to take on another challenge. For homework, the student was also asked to practice this in another setting (home or school). Students were reminded of the upcoming conclusion of services, and any questions or concerns about termination and next steps were welcomed. During the seventh session (titled Maintenance), the child and therapist reviewed some of the challenges from the weekly homework. The purpose was to encourage the coping strategies are across settings to be practiced and continued by the child beyond the eight sessions. For instance, rather than being in a room alone at school, a child was encouraged to try it at home and to continue to increase the challenge (e.g., five minutes, ten minutes, fifteen, thirty, and so on). In addition to the homework, the student was exposed to a higher-level challenge within the session. Similar to session six, the participants used their STOP technique, favorite coping skill, and favorite fidget toy during the session to manage their anxiety while facing a more difficult or intense fear (e.g., being in the room alone for a longer period of time). The participants were successful in this level of exposure and were given more homework to continue to practice within the home setting. Students were reminded that the next session was the final session. 36 The final session concluded the therapy session with discussion about termination, addressing student concerns about the future, reviewing highlights, predicting future challenges, planning solutions, and generalizing to other settings. Students were given a copy of their progress they made throughout therapy (a copy of “how much they grew” was given based on the starting rank of their fear ladder to the rank of their fear ladder on the final day of therapy). The therapist also provided parents with an in-person didactic on anxiety, how it presents in their child, and coping strategies that may be useful for the child. This hour-long session was an opportunity for parents to learn more about their child, voice their concerns, provide feedback, and ask any questions that they had regarding their child’s progress and the intervention. A survey and exit interview were given to determine student’s perception of the usefulness of this intervention. Perceived levels of anxiety were measured by a rating scale and their perception for the usefulness of the intervention was measured by their rating of the techniques. The techniques were modeled and practiced by the student in session. They were also used during the exposure portion of the treatment. In addition, effectiveness was measured by a test of their knowledge that covered concepts discussed in treatment (i.e., ability to define a false alarm, real alarm, and naming three techniques learned). Post-intervention measures were completed by the parents and teachers using the TEI to reevaluate the usefulness of the intervention after implementation. They also completed the BIRS to assess their overall satisfaction with the treatment by measuring acceptability, effectiveness, and time of effect. Data Analysis A quasi-experimental, single case research design was conducted using nonconcurrent multiple baseline design (MBD) across participants. In MBD, baseline-to-intervention (in this 37 case, an AB design) was compared across participants. The researcher predicted that perceived levels of anxiety would decrease after the start of intervention (i.e., when the independent variable was introduced). Researchers suggest this pattern is best replicated across tiers (participants) in the multiple baseline so that internal validity (evidence of a treatment effect) could be strengthened (Riley-Tillman & Walcott, 2007). According to What Works Clearinghouse Procedures and Standards Handbook, Version 5.0. (WWC, 2022), multiple baseline designs “must have a minimum of six phases split into two conditions.” Thus, the researcher recruited a minimum of three students who each received baseline and intervention phases to meet WWC Standards Without Reservations. The requirement that participant observations be measured at overlapping time periods (e.g., concurrent data) clearly poses problems for researchers in school settings because students with the same target behavior may only infrequently be referred (or consented) at the same point in time. Watson and Workman (1981) described a nonconcurrent multiple baseline design for which participants begin the study as they are referred to the researcher. Christ (2007) reviewed the merit of both concurrent and nonconcurrent MBD with consideration of their ability to assess threats of internal validity and establish experimental control. He concluded that both were experimental designs and have potential to contribute to science. The key to nonconcurrent MBD is the a priori specification of baseline durations and random assignment of participants to baseline durations (Christ, 2007). For this study, the researcher used staggered entry points with randomly assigned baseline lengths to reduce the threat to internal validity of maturation (i.e., normal processes that cause participants to change across time). Nonconcurrent design was especially practical within a school setting. There were many factors (i.e., parent permission, child consent, fit for treatment, attrition, and school scheduling) that were considered when 38 selecting a flexible and practical design for this study. The nonconcurrent design allowed for students to be recruited on a rolling basis and be randomly assigned a particular number of baseline sessions prior to beginning treatment. For example, baseline session 1 did not start on the same date for Ashton as it did for Sawyer based on the rolling recruitment. Some disruptions in weekly interventions (e.g., student illness, field trip, school break, etc.) were expected. There were 18 weeks of the semester. In the interest of time, the researcher collected data twice a week to ensure that each student obtained at least 5 data points per phase. Stable baseline data was also achieved prior to the start of intervention even with a pre- determined set of baseline data (nonconcurrent baseline). Given the requirement for a priori assignment of baseline durations, these were established via random assignment pre-intervention (Christ, 2007). There are a different ways to calculate effect sizes for single case experimental designs (Sullivan & Fein, 2012). Schlosser, Lee, and Wendt (1987) recommended using the percent of nonoverlapping data (PND) for single case studies to determine effect size. The PND is based on the notion that the smaller the percentage of overlap across phases, the greater the impact of the intervention. For AB data, PND is typically calculated by locating the lowest data point in baseline and counting the number of data points which fall below that baseline data point. One of the38otentiall criticisms of PND, however, is that it may be heavily impacted by outliers (Fingerhut et al., 2021). Tau-U is another method for determining effect size. It contains similar properties to PND and is commonly used for single-case experimental designs (Fingerhut et al., 2021). When considering how to calculate the effect size for this study, it was important to take into account both the small sample size and the variability in responses to treatment among 39 children on the spectrum. Given the possibility that outliers may be present, Tau-U was used to capture the effectiveness of this intervention. Specifically, a Tau-U A vs B was used to compare baseline and intervention since there were no major trends within baseline and it was relatively stable. CHAPTER 3: RESULTS Research Question 1 To address research question 1 (To what extent do perceived levels of anxiety decrease for school age students with ASD using a modified version of the MATCH ADTC curriculum?), progress monitoring data during baseline and intervention were examined for each participant. Ashton (Pseudonym for Participant One) Ashton was an eight-year-old Caucasian male enrolled in a kindergarten through eighth- grade school. He was a student with a medical diagnosis of autism and received special education services for a speech impairment (SI) with goals in articulation. He was a creative child who enjoyed drawing spaceships and discussing science fiction, spaceships, and books. He was a member of the mathletes team and was invited to participate in a math competition during the start of the intervention; however, he declined the invitation due to fear of “failure” and “embarrassment in front of a crowd.” Per his mother, Ashton struggled to build and maintain friendships because he did not partake in the same interests as most boys his age. He also appeared to struggle with social communication and consistently avoided eye contact with others. He was frequently observed sitting by himself during unstructured time in the classroom. He also was noted to eat outside of the cafeteria with trusted adults. Overall, Ashton’s mother perceived his anxiety levels higher than he did for himself based on the SCARED (See Table 1). His mother’s scores fell within the clinically significant range in the areas of total anxiety, generalized anxiety, and school avoidance. They both endorsed clinically significant scores in the areas of separation anxiety and social anxiety. These scores were generally consistent with the SCAS scores which were also elevated for him and his mother prior to the start of the intervention (See Table 2). 41 Table 1. Pre-Intervention Parent/Child SCARED Ratings- Ashton Parent Child Total 46* 24 Panic 3 0 Generalized 16* 7* Separation 12* 7* Social 11* 9* School 4* 1 *Clinically significant scores: Total= >25; Panic= >7; Generalized= >5; Separation= >5; Social= >6; School = >3 The rating scales indicated that school-related anxiety and social anxiety were negatively impacting his ability to function in school. During the first few sessions, Ashton expressed awareness that he was different from his peers and had goals to find more confidence to talk to peers. Therefore, Ashton focused on his fear of conversing with teenagers. The exposure aspect of the intervention included two middle school girls talking to him about his interests for sessions six and seven, and him starting up a conversation with a group of middle school boys in the hallway after session seven. The conversation with the girls was planned and expected; however, the discussion with the boys was an unexpected situation. Still, Ashton accepted the challenge presented by the therapist, and with some encouragement and reminders of his previously learned skills, he successfully engaged in reciprocal conversation with middle school students in the second to last session. He was able to say what went well (i.e., the boys asked him questions and he responded well, and asked them questions) and what was 42 difficult for him (i.e., he wasn’t planning on talking to a group of boys). Overall, this exposure impacted his final rating for anxiety talking to older peers (i.e., teenagers), after he saw how successful he could be completing the task. Table 2. SCAS Total Parent/Child Ratings- Ashton Pre- Intervention Post-Intervention Reliability Change Index Parent 44* 43* Stable Child 27* 26* Stable *Clinically significant scores= >24 Ashton’s progress monitoring anxiety data are presented in Figure 1. He was asked to rate his fear levels on a scale of 1 to 10 (1 being calm and 10 being extremely scared) when thinking about what it would be like to talk with a teenager. During baseline, his scores ranged from 7 to 10, with a mean of 8.2 and a standard deviation of 1.16. Baseline data reflected a moderate-to-high level, slightly accelerated trend with low variability. Upon the implementation of MATCH-A, his ratings fluctuated throughout the didactic portion of the intervention, but the data shifted to a moderate level, descending trend with low variability (M= 6.4, SD= 1.34). This data shifted again in the final part of the intervention when the didactics were paired with exposure therapy into a low-level, descending trend with low variability (M= 3.33, SD= 2.08). There was a 35.7% decrease from the start of the intervention until the end (i.e., a seven-week span). Overall, there was a statistically significant difference from baseline to intervention and the treatment was found to have a medium effect size (p < .05, Tau-U= -0.77, SD= 13.66, 90% CI= [-1.00, -0.21]). 43 Figure 1. Nonconcurrent Multiple Baseline Data Presentation *Sessions were completed nonconcurrently (i.e., participants did not receive interventions on the same day; however, content was consistently presented for each participant during each session). 44 Jackson (Pseudonym for Participant Two) Jackson was a fourteen-year-old Caucasian male. He was eligible for special education services in the category of autism and had specific goals to address social skills. He took an interest in agriculture, horticulture, and plants. Jackson was quiet, soft-spoken, and slow to respond. He did not frequently initiate conversations with the therapist but often reciprocated conversation with a short-ended response. When asked open-ended questions, he frequently shrugged his shoulders or used the phrases “I am not sure” or “I do not know.” Table 3. Pre-Intervention Parent/Child SCARED Ratings- Jackson Parent Child Total 34* 16 Panic 15* 4 Generalized 7* 5* Separation 2 3 Social 8* 4 School 2 0 *Clinically significant scores: Total= >25; Panic= >7; Generalized= >5; Separation= >5; Social= >6; School = >3 There were discrepant anxiety ratings between Jackson and his mother on the SCARED. His mother indicated elevated scores in the areas of total anxious behaviors, panic disorder, and social anxiety; however, his scores were in the moderate risk range on the SCARED (Table 3). The discrepant scores between mother and child were also consistent for the SCAS rating scale 45 (Table 4). Initially, it was challenging to formulate treatment goals because of his low engagement. Jackson focused on his worries and concerns about the future because of fear of what could happen. Per Jackson, the news was a major contributor to his fears. He heard and watched many current events which made him fearful of getting hurt or dying. If Jackson participated in the exposure portion of this intervention, he would have been able to choose among discussion of a past event, reading an article about what is going on in the world, watching an episode of the news, or coming up with another challenge that best suited his comfort level. The goal of the exposure would aim to shift his thinking of “what’s wrong” to “what’s strong.” Ultimately, he opted not to complete the final two sessions of the intervention (i.e., exposure therapy) as he reported that he no longer experienced anxiety-related thoughts about the future or a needed to talk with someone about anything anxiety related as was previously the case. Table 4. SCAS Total Parent/Child Ratings- Jackson Pre- Intervention Post-Intervention Change in Score Parent 29* 33* +4 Child 15 3 -12 *Clinically significant scores= >24 Jackson’s progress monitoring anxiety data are presented in Figure 1. During baseline, his scores on SCARED ranged from 7 to 8, with a mean of 7.33 and a standard deviation of 0.52. Baseline data had a moderate-to-high level, stable trend with low variability. During Phase B (i.e., the implementation of MATCH-A), the data shifted to a moderate-to-low level, descending 46 trend with low variability, as he reported lower levels of anxiety (M= 2.0, SD= 2.74). He completed five out of eight sessions and discontinued services before the three remaining sessions (i.e., the exposure part of the intervention) were conducted. There was a 72.7% decrease in his perceived levels of anxiety. Although he did not complete the remaining three sessions of the intervention, there was a statistically significant difference between his reported anxiety levels from baseline to intervention and a large effect size was established (p < .05, Tau-U= -1.00, SD= 10.95, 90% CI [-1.00, -0.47]). A large effect size. Sawyer (Pseudonym for Participant Three) Sawyer was a seven-year-old Caucasian male with a school classification of autism and a specific learning disorder (SLD) in reading. He received special education services primarily for reading and had measurable goals for social skill development in his IEP. In general, he demonstrated social skills and fostered positive relationships with peers at his school. He frequently had many students and teachers greet him by name in the hallway. He appeared to enjoy the interactions, as evidenced by smiles and appropriate responses (e.g., waving, saying “hey” back). Sawyer co-slept with his parents daily, feared being in his room alone, struggled to go to public bathrooms alone, and feared being kidnapped in social settings. Sawyer received clinically significant scores on both parent and child SCARED rating scales, which indicated a high probability of elevated perceived anxiety levels (Table 5). There was minimal variability between his scores and his parent’s ratings. Both he and his mother reported clinically significant scores in separation anxiety and total anxiety. In addition, Sawyer’s mother’s scores were clinically significant in social anxiety. Consistent with the 47 elevated SCARED scores, he received high overall scores on the SCAS-P and SCAS-C which suggested that he exhibited many anxious behaviors, particularly seen at home (See Table 6). Table 5. Pre-Intervention Parent/Child SCARED Ratings- Sawyer Parent Child Total 36* 32* Panic 4 4 Generalized 8* 6* Separation 12* 13* Social 9* 6* School 3* 3* *Clinically significant scores: Total= >25; Panic= >7; Generalized= >5; Separation= >5; Soc