1 Understanding Tourette: Teens & Young Adults in TransitionCathy L. Budman, MD & Heather Adams, PhD Cathy Budman, MD Director, National Tourette Center of Excellence at Northwell Health Heather Adams, PhD Co-Director, National Tourette Center of Excellence at the University of Rochester Medical Center

2 Dr. Budman’s Disclosures Grant Support: Synchroneuron, Psyadon, Auspex, Neurocrine and TEVA Pharmaceuticals Consultant: Bracket eCOA Medical Advisory Board: Tourette Association-LI, LI-CHADD Speaker: Tourette Association of America-CDC Partnership Discussion of off-label and/or investigational use: yes X no ___

3 Dr. Adams’ Disclosures Grant SupportAbeona; Batten Disease Support & Research Association (BDSRA); Batten Research Alliance (BRA); Disability Research and Dissemination Center (DRDC); National Institutes of Health-NHLBI Consultant Biomarin, CogState, ProPhase Medical Advisory Board BDSRA Discussion of off-label and/or investigational use yes no X

4 Basic Facts About Tourette Syndrome

5 Question 1: What is a tic. Question 2: What is a tic disorderQuestion 1: What is a tic? Question 2: What is a tic disorder? Question 3: What is not true about tic disorders (What are some of the myths and misconceptions) ?

6 Tics are not: Insects Contagious Dangerous to othersSigns of mental instability No longer “stereotyped” Clonic: abrupt onset, rapid Dystonic: briefly sustained abnormal posture Tonic: isometric contraction/ abdominal tensing

7 General Clinical Features of Tourette SyndromeMultiple motor and ≥ 1 phonic tics Tics are present > 1 year Onset of symptoms before age 18 years Occurs in about 1% of the population 3-4 times more common in males > females 2X more commonly diagnosed in non-Hispanic Whites Complex genetic inheritance with environmental influences Associated with abnormal brain circuitry Many treatments but no cure Tics improve over time; psychiatric co-morbidities often persist Psychiatric co-morbidities often more disabling than tics

8 Common Co-Occurring Conditions In Tic Disorders

9 Autistic Spectrum DisordersTic Disorders and Common, Co-occurring Conditions Other Common Concerns Mood Disorders % School problems % Sleep Problems 20 – 50% Autistic Spectrum Disorders 4% - 12% OCD / OCB (8 - 30%) ADHD ( %) Tourette Syndrome Anxiety ( %) Month Day, Year

10 Among people with Tourette Syndrome, when do co-occurring conditions develop?(Hirschtritt et al ; JAMA Psychiatry)

11 Co-occurring conditions persist4-10 Yrs. Old peak risk Through Adulthood Co-occurring conditions persist Late Teens Tics Improve (Hirschtritt et al ; JAMA Psychiatry)

12 The Road from Adolescenceto Adulthood: What are the Challenges and Why?

13 Core Developmental Issues in Adolescence, & Impact of TSIndependence / Autonomy Dependence on parents, therapists, doctors, medication, school modifications Personal Responsibility / Accountability Consequences of ADHD, OCD, Anxiety, Mood Symptoms, Learning difficulties Personal identity – values, peer group, sexuality Immaturity, social isolation / bullying, medication side effects Self-competence – body image, skills, performance Medication side effects, ADHD / OCD / executive dysfunction

14 Steps for Successful Launch from Adolescent to Young AdultFueling & Preparation Lift Off The Rocket Navigational Skills to Stay on Course Capsule & Refueling

15 Steps for Successful Launch from Adolescent to Young AdultBuild mastery of daily life skills Requires mental, physical, emotional energy, initiative, motivation Fueling and Preparation Shed old habits, confront fears, set realistic goals May involve: college, joining the workforce, living independently Lift Off Clarify values, priorities, and goals Identify attainable goals and map a pathway to meet them The Rocket Learn & practice new skills, in order to achieve goals Perseverance and structures (family, friends, school, work) to help meet and maintain goals Navigational Skills to Stay on Course Sustain motivation & build internal momentum Develop resiliency to help persevere through life’s ups and downs Capsule and Re-fueling

16 Challenges to a Successful Launch, for Teens with TSFueling and Preparation Executive dysfunction, co-occurring conditions may drain cognitive, physical, emotional energy, and limit motivation & initiative Lift Off Can be affected by…rigid style, OCD rituals, anxiety, disorganization, impulsivity, distractibility, academic delays, poor time management The Rocket May need to modify or change travel path, or may succeed at the price of sacrificing balance (e.g. workaholic) Navigational Skills to Stay on Course Inadequate educational/vocational supports. If family members are under stress, it may impact the support they can provide Capsule and Re-fueling Managing tics, co-occurring conditions, medication side effects, etc. can drain energy needed to sustain effort toward goals

17 How can we help teens with TS make a successful transition?This is a process, one that begins well before teen years. At each age, ask… “What does my child / teen needs to learn now, to promote success with other skills later on?” Identify areas of strength and need (also an ongoing process!) Set a plan to train up teens in areas of need. Likely suspects are… Executive Skills Social Skills Academic Skills Independent Daily Living Skills Resiliency Ensure good treatment of co-morbidities that are likely to persist. ADHD OCD Anxiety & Depression Any others

18 Executive Skills

19 Executive skills: Organization, planning, flexibility, working memory, problems solving, self-monitoring, mood regulation, seeing the ‘big picture’ Explicit and systematic strategy instruction. Direct modeling, then opportunities for practice and feedback. Explicit training in how to generalize strategy use. e.g., problems with organization, planning, cognitive flexibility, etc.  Model and practice collaborative, proactive problem solving. (Ross Greene – Lives in the Balance) There should be a mix of accommodations/services to provide… Support for weak executive function skills Access to academic content despite weak EF skills Gradual, careful, systematic, planned training in EF skills

20 Executive Skills – A few resources…Strategies to Build EF Skills and Support Weak Areas executive-functions/ Sample IEP Goals: Developed by a school district /everything-executive-functioning-handbook.pdf Suggested EF Activities for Teens: Adolescents.pdf Collaborative and Proactive Solutions:

21 What is Resilience?

22 Resilience is a processThe result of individuals being able to interact with their environments and the processes that either promote well-being or protect against the overwhelming influences of risk factors (Zautra, Hall, & Murray 2010) How individuals navigate their way to psychological, social, cultural, and physical resources that sustain their well-being (Unger 2008) Protective factors and processes mitigate against risk factors that would otherwise undermine successful adaptation Risk factors: bullying, physical limitation,

23 Resilience can be promotedGood coping strategies, families, friends, schools, employment opportunities, communities, and social policies make resilience more likely to occur (Leadbeater, Dodgen, & Solarz 2005)

24 Factors Related to Resilience & TSStrong psychosocial supports Self-confidence Problem solving skills Capacity to make realistic plans Capacity to manage emotions Capacity to manage impulses Some of these factors may be diminished by tics and/or associated psychiatric comorbidity Some of these factors are influenced by underlying neurobiological stress reactivity

25 Resilience and TS: Knowing (and Taming!) the Tiger

26 Tics OCD / OCB Anxiety & DepressionMedication Management Manage Triggers (Sleep, stress etc.) Comprehensive Behavioral Intervention for Tics (CBIT) OCD / OCB Medication management Cognitive Behavioral Therapy (CBT) Acceptance & Commitment Therapy (ACT) Anxiety & Depression CBT (add Behavioral Activation, for treatment of depression) ADHD Psychosocial Treatment Home-based behavior management, Behavioral classroom management, Behavioral peer interventions Cognitive Training

27 Closing Thoughts

28 Thank you Children, Teens, Parents, Families who we are privileged to work with and learn from Tourette Association of America ~ for presenting this program NewYork-Presbyterian/Westchester Division Program (Well-Cornell Medicine) ~ for providing the location