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1 Conflict of Interest: Royalties: Facing Your Fears: Group Therapy for Managing Anxiety in Children with High- Functioning Autism Spectrum Disorders Paul Brookes Publishing Company Acknowledgements Organization for Autism Research (OAR) Doug Flutie Foundation Cure Autism Now (CAN) Autism Speaks Centers for Disease Control (CDC) CADDRE network JFK Partners UCEDD Grant #90DD0561; Administration on Developmental Disabilities NIH: #1R21MH HRSA: #1R40MC15593A Children/Adolescents with ASD and their families CBT researchers Colleagues/Trainees and Research/Clinical Teams Overview of Presentation Susan Hepburn, Ph.D. Lila Kimel, Ph.D. Meena Dasari, Ph.D. Alison Galansky, Ph.D. Brian Wolff, Ph.D. Steven Shirk, Ph.D. Kristina Kaparich, MPH Amy Philofsky, Ph.D. Rebecca Schroeder, Ph.D. Irene Drmic, Ph.D. Megan Martins, Ph.D. Amie Duncan, Ph.D. Jenni Rosenberg, Ph.D. Mary Hetrick Jessica Stern Alison Galansky, Ph.D. Shana Nichols, Ph.D. Phil Kendall, Ph.D. Joy Browne, Ph.D. Erin Flanigan Katy Ridge Alison Herndon Kathy Culhane-Shelburne, Ph.D. Celeste St.John-Larkin, M.D. Mark Groth Samantha Piper, Ph.D. Michelle Shanahan, Ph.D. Lauren McGrath, Ph.D. Eileen Leuthe, Ph.D. Eric Moody, Ph.D. Lindsay Washington, Ph.D. Overview of Facing Your Fears (FYF) child and parent components Children (8-14) Teens (13-18) 18) Data from treatment trials Reaching the underserved (using telehealth) Improving transportability of FYF Summary, limitations and future directions Making the Case Why Study Anxiety in Children with ASD? Prevalence Anxiety symptoms are very common in persons with ASD (Bellini, 2004; Brereton et al. 2006; de Bruin et al. 2007; Leyfer et al. 2006; Simonoff et al. 2008), Greater than children with other DD (Gilliott et al., 2001). Impact Anxiety interferes with child s functioning in home, school and community activities (Russell & Sofronoff, 2005) Persistence Without intervention, symptoms may continue across lifespan (Hudson et al., 2001) Potential to treat Anxiety-related behaviors are treatable in persons without ASD using CBT (Compton et al., 2004; Walkup et al. 2008) Definitions (Manassis, 1996) Worry: Preoccupation with frightening and upsetting aspects of experience, often anticipated and not yet experienced Fear: a strong, physical, mental, and emotional reaction to truly dangerous events Anxiety: fear in the absence of real danger Disorder: Excessive and persistent; anxiety markedly interferes with day to day functioning Brave behavior: Facing fears, tolerating anxiety, letting go of worries 1

2 Common Anxiety Symptoms Difficulty separating from parents Marked and excessive fearful responses to objects or events Persistent and chronic worry Excessive avoidance Somatic complaints Presence of distressing thoughts Concentration difficulties Restlessness Fatigue Irritability Sleep disturbance Physiological over- reactivity Symptom Expression of Anxiety in Children with ASD Avoids novelty Withdraws from social situations Resists changes in routines Prefers rules Narrow focus of attention Insists on sameness Develops safe escape routes Increases repetitive behaviors and/or intensity of special interest Becomes irritable easily Becomes explosive suddenly Development of Anxiety Disorders in Children Vulnerabilities Temperamental (behavioral inhibition) Cognitive (attentional bias to threat, Barrett, 1996) Trauma/negative life events Parental anxiety Parenting style Interaction between these vulnerabilities and environmental factors CBT Conceptualization of a Child with Separation Anxiety (adapted by Weissman et al) Trigger Parent goes to another floor of the house Thoughts Fear of harm to self I need my parents so I can be ok Physical feelings Behavior Sweating Rapid heart rate Dry mouth Headache Refusal Crying Clinging Following parent around the house CBT Conceptualization of a Child with Social Anxiety (adapted by Weissman et al) Trigger Ordering food in a restaurant Thoughts????????? Physical feelings Behavior??????????? Sweating Rapid heart rate Dry mouth Headache Cognitive-Behavioral Strategies for Anxiety: Core Components CBT is psychosocial treatment of choice (Compton et al. 2004; Walkup et al. 2008) Psychoeducation Somatic management Cognitive restructuring Problem solving Graded exposure Relapse prevention (Velting, Setzer & Albano, 2004). 2

3 Applying Core Components of CBT to Children with Autism Spectrum Disorders and Clinical Anxiety CBT for Children with ASD Case Studies and Small Group Studies (Lehmkuhl et al. 2008; Reaven & Hepburn, 2003; Reaven, et al. 2009; Sze & Wood, 2007; White et al. 2009) Randomized controlled trials - (psychiatric complexity, modality varies) Sofronoff et al., yrs. Chalfant et al., yrs. Wood et al., yrs. Treatment Program for Anxiety and ASD Brief Overview Outpatient clinical work Case study of 7 year old girl with ASD and OCD (Reaven & Hepburn, 2003) Initial group treatment study (Reaven et al. 2009) Randomized trial (Reaven et al., 2012, JCPP) Adolescent pilot study (Reaven et al. in press) Training Grant (Pilot - IWK in Halifax; Baltimore, Birmingham, Chapel Hill, Cincinnati) Telehealth grant (Susan Hepburn, Ph.D.: PI) Overview of Treatment Package Total Duration of treatment: 14 weeks 1 ½ hour per session Modality: varied; children alone, parents alone, dyads and large group work First seven weeks: Define anxiety symptoms, identify anxiety provoking situations, develop a set of tools (relaxation, helpful thoughts, emotion regulation, graded exposure) Second seven weeks: Identify goals and create stimulus hierarchy, apply tools across settings, in-vivo graded exposure, video activity to reinforce core concepts Booster session: 4-6 weeks post-treatment treatment Modifications for ASD Basic CBT content is unchanged Modifications based on the cognitive, linguistic and social needs of children with ASD Integrated social skills curriculum, not a separate module Group structure and management Token reinforcement program for in-group behavior Visual structure and predictability of routine Careful pacing of each group session Modifications for ASD, Cont d Modifications in teaching basic concepts Prerequisite skills (i.e.,feeling vocabulary) Written worksheets Multiple choice lists Drawing and other creative outlets Repetition and practice Video modeling and video self-modeling Strength based Incorporation of special interest Parent component critical 3

4 Components Define Anxiety Symptoms (enhance self-awareness) Increase emotion vocabulary Establish common vocabulary Identify anxious situations Identify physiological symptoms Emphasis on symptom intensity and interference Child Treatment Components Establishing a framework (March & (March & Mulle, 1998) Provide factual information about anxiety (emphasizing physiological components) Externalize anxiety symptoms Compare anxiety time vs. fun time Child, family, therapists and school staff all on a team to manage anxiety Child strengths emphasized identity identity expanded beyond anxious child Child Components continued Psychoeducation: Active minds (Garland & Clark, 1995) vs. Helpful thoughts Establish the circular connection between physiological reactions, thoughts, and somatic response Worry s false alarm (Chansky, 2004) Establish basic principle that anxious feelings will pass Child Components continued Introduce tools to manage symptoms Fine tune self-awareness of anxiety Attend to self-statements; statements; substitute positive coping thoughts Getting a handle on somatic symptoms introduce relaxation and other calming activities broadened concept Develop a list of calming activities and SCHEDULE Introduce stress-o-meter Teaching Emotion Regulation: Plan to Get to Green Develop a specific plan for when children are in the red zone Move one step at a time (e.g., 8-7; 7-6; 6-5, etc.) Establish child preferences for moving out of red zone Avoid problem solving when child is in red Create reward program for using strategies and staying in green Child Components continued Creating Steps to Success List anxiety provoking situation Rank order the situations from 1-8 Choose situations that are mild-moderately moderately stressful Generate strategies for facing fears Practice graded exposure in session Encourage self-evaluation evaluation and self-reward Write an Episode of Face Your Fears 4

5 Video Face Your Fear Videos Public Bathrooms Toilets Flushing Spiders/bees Elevators Upper classmen Ugly leaves Tornados School buses tipping over Going outside Going to Highlands Ranch, CO Choking Making mistakes Fear of dying The dark Mice/rodents/snakes Talking to people Losing things Scary movies Getting the flu Playing new sports activities with other kids Staying home alone People who look different Change Loud noises Working with Families Including parents improves outcomes (Barrett et al. 1996; Roblek & Piacentini, 2005) Parent training can reduce temperamental risk for anxiety disorders (Rapee & Jacobs, 2002) Younger children and girls responded better to parental involvement although effects minimal over time (Cobham et al. 1998) Essential for children with ASD! Development of Anxiety Disorders in Children Vulnerabilities Temperamental (behavioral inhibition) Cognitive (attentional bias to threat, Barrett, 1996) Trauma/negative life events Parental anxiety Parenting style Interaction between these vulnerabilities and environmental factors Anxiety Components: A Fearful Experience at the Zoo FYF - Parent Component Fewer opportunities to practice facing fears Avoid the snake cage and/or zoo Decreased Learning + Coping Behaviors Physical Reactions Thoughts Heart racing, sweating, butterflies in stomach as you approach the snake cage The snake might get out of its cage! Promote support among participants Provide psycho-education about anxiety disorders; learn the basic tenets of CBT Establish targets for graded exposure tasks Model brave behavior Encourage/reward brave behavior in their children Discuss parental anxiety and parenting style 5

6 Adaptive and Excessive Protection (Reaven & Hepburn, 2006) Adaptive Protection: a parenting approach that takes into account a child s developmental strengths and weaknesses, and supports a child to face fears and handle anxieties Excessive Protection: parenting approach that provides excessive protection, even though the child may possess the requisite skills to handle anxieties and face fears Relapse Prevention Review progress and future challenges Expect relapse and plan for it Emphasize and rehearse tools and strategies Celebrate and measure progress Build in review sessions Results of Initial Treatment Study (Reaven, Blakeley-Smith, et al., 2009) Participants: Children (and parents) with ASD and anxiety (separation, social, specific, or generalized anxiety); N=33 Parents reported significant reductions in anxiety relative to wait list control group No significant differences in child self-report between groups Limitations: small sample, not randomized design, measurement of anxiety, lack of independent evaluator Randomized Trial of FYF (Reaven et al. 2012, JCPP) Conduct a randomized trial of the FYF treatment Treatment as Usual (TAU) vs. Facing Your Fears (FYF) program Examine the reduction in anxiety symptoms post- treatment/tau Recruited through community outreach efforts A cohort formed with 10 children of similar ages (8-10; 11-14) 14) and then randomization within the cohort (TAU or FYF) Independent clinical evaluator to conduct pre-post post assessments Participants: Inclusion and Exclusion Criteria Consort Flow Diagram Recruited / Consented n=65 Inclusion Criteria: Children (8-14 years) and one parent Verbally Fluent (VIQ >80) Exceeding ASD cutoff on the ADOS-G, ADI-R, and/or SCQ Clinical diagnosis of ASD Exceeds clinical cut-off of SEP, SOC, GAD on the SCARED (Birmaher er al., 1999) Exclusion Criteria: Presence of severe mental health symptoms Inability to attend 80% sessions Lack of group readiness Allocated to TAU n=26 Drops during TAU n=0 ITT Analyzed n=26 Randomized n=50 Assessed for Eligibility n=65 Allocated to FYF n=24 Drops during FYF n=3 ITT Analyzed n=24 Excluded n=15 Does not meet inclusion criteria (n=12) Decline further participation (n=3) 6

7 Intent to Treat (n=50) TAU (n=26) Age (yrs.) (20.45) Full Scale IQ (17.33) Gender (% Male) Ethnicity (% Caucasian) FYF (n=24) (21.47) (16.85) p value Treatment as Usual 26.1% on medications targeting anxiety 69.6% social skills interventions 26.1% bully-proofing programs 17.4% individual psychotherapy targeting coping or emotion regulation 8.7% family focused interventions ASD dx Autistic Disorder Asperger Syndrome Outcome Battery Primary Outcome Measures: Anxiety Disorders Interview Schedule-Parent Version (ADIS-P; Silverman & Albano, 1996) Screen for Child Anxiety Related Disorders (SCARED; Birmaher et al. 1999) Clinical Global Impressions Scale-Improvement (CGIS-I; I; Guy & Bonato, 1970) Secondary Outcome Measures: Developmental Behavioral Checklist (Einfeld & Tonge, 1994) Children Automatic Thoughts Scale (Schniering & Rapee, 2002) Parent Mental Health (State-Trait, BDI) RCT Results No pre-treatment differences between groups on IQ, age, autism severity, or clinical anxiety symptoms Psychiatric Complexity: (1-7, M=5.1; FYF); (2-8, M=4.65; TAU) Most common diagnoses: ADHD; Disruptive; Mood Strong treatment fidelity Mean overall agreement 96% ( range: ) High participant satisfaction 96% of parents and 82% of youth reported feeling Satisfied or Very Satisfied with the intervention Results ITT Sample Decreased clinician severity ratings (ADIS-P) for SEP (p=.047), SOC (p=.02), GAD (p=.007), and SpP (p=.0001); effect sizes ranged Fewer # of dx post-treatment treatment for FYF (p=.03) GAD significantly decreased in FYF (p=.01; effect size =.85) RCT Results ITT Sample Clinical Global Impressions Scale Improvement (CGIS-I) I) completed by independent clinical evaluator (ADIS-P/SCARED) Scale from 1-7 (1=very much improved; 7=very much worse) CGIS-ADIS ADIS-P Imp (FYF vs. TAU), p < % of FYF group demonstrated improvement compared with 8.7% in TAU group Effect size =

8 RCT: Follow-up Data FYF Adolescent Components Increase awareness of the signs and symptoms of anxiety, emphasize the connection between cognitions and physiological responses to anxiety Create tools to manage symptoms relaxation and cognitive restructuring Social skills module Establish a fear hierarchy and teach adolescents to face fears a little at a time (graded exposure) Include parents To incorporate technology (i.e. PDA/iPod Touch) Functions of the PDA/iPod Touch ipod Touch Screens: Monitor anxiety symptoms on a regular basis Remind the participants to engage in relaxing/calming activities Guide participants through steps they can take when faced with a challenging situation Document exposure practice Provide information regarding progress SymTrend Examples of Teen Exposure Hierarchies Heights Spiders going into the basement alone Going to local places independently Telling teachers about the ASD diagnosis and asking for help Giving oral presentations in school Going to public high school Talking with unfamiliar people Inviting others to get together Loud noises car alarms, vacuums Talking on the telephone Talking with parents about sensitive topics Preparing for the driver s license test Tolerating changes/when others make mistakes Face Your Fears: Oral Presentations Exposure Steps Completed in Group Deliver a powerpoint to familiar and unfamiliar adults Deliver a powerpoint to familiar peers and adults Deliver a powerpoint to familiar peers (e.g., fellow group participants) Practice delivering powerpoint presentation on a preferred topic out loud at home Number of People Observing

9 Results: Teens with ASD (n=24) Age (yrs.) 15.5 (range ) Full Scale IQ Nonverbal IQ Verbal IQ (range , SD = 17.27) (range , SD = 17.55) (range , SD = 17.23) Gender % Male 62.5 Ethnicity % Caucasian % Other # of Pre-treatment Diagnoses Sep, Soc, GAD Parent report: 2-11 (mode =4) Teen report: 0-7 (mode = 4) % Taking Medication 58.3 Results Post-Treatment Technology: Palm Z22PDA vs ipod Touch ipod Touch significantly greater check-ins (t=.63,p=.03) No difference in # of documented exposure practice (t=.63,p=.73) Exposure practice positively, but weakly correlated with improvement in primary dx (rho=.20,p=.35) =.35) CGI-Severity (t=3.896, p=.001) Developmental Behavior Checklist (DBC; Einfeld & Tonge, 2002) Total Problem Behavior Scores: (t= 4.818, p =.0001) Disruptive Behaviors Domain Scores: (t=3.885, p =.001) Anxiety Domain Scores (t= 3.543, p =.002). Treatment Outcome Anxiety symptoms SCARED- Total Score Parent report (t=2.875, p=.009) Teen report (t=3.896, p=.001) CGIS-Improvement Improvement Primary diagnosis 46% of teen participants much improved or very much improved 33% somewhat improved 21% no change No participants experienced a worsening of symptoms Video: Facing Your Fear of Disappointment Conclusions, Limitations and Future Directions Significant reductions in anxiety symptoms occurred for psychiatrically complex children and teens with ASD post FYF Small sample size Lack of attention control group Future Directions: Improve measurement strategies for clinical/functional significance Examine follow-up data RCT of FYF-A Work with school-based populations 9