Obsessive Compulsive Disorder Trichotillomania Hoarding Disorder and Excoriation

Obsessive Compulsive Disorder, Trichotillomania, Hoarding Disorder and Excoriation Disorder Allison E. Cowan MD Julie P. Gentile MD Ohio’s Coordinating Center of Excellence in MIDD And Ohio’s Telepsychiatry Project in ID

Diagnostic Manual-Intellectual Disability • DSM-V criteria adapted to better fit ID patient population • DM-ID published by The National Association for the Dually Diagnosed (NADD), in association with The American Psychiatric Association • Chapter: Obsessive Compulsive and Related Disorders (Drs. Benson, Gillig and Fleischer)

DSM-V • The DSM-V includes a new chapter on Obsessive Compulsive and Related Disorders • New disorders also have been identified: Hoarding Disorder and Excoriation (skinpicking) Disorder • Similarity among the set of disorders across symptoms, neurobiological networks, genetics, course of illness and treatment response

OCD Cycle

OCD – Prevalence ~2. 5% • Recurrent obsessions and compulsions that are time-consuming (specifically more than one hour daily) or causing clinically significant distress/impairment; • Must experience obsessions as intrusive and unwanted; • Attempts to ignore/suppress the obsessions to neutralize them with some other thought or action; • Anxiety or distress occurs in most individuals but is not required to make the diagnosis.

Making the Diagnosis • Obsessive thoughts/compulsive behavior: most individuals with ID have an element of OCD • • Questions: Is it disruptive? Causing individual to be late? Interfering in relationships and/or schedules? Lasting more than an hour daily? Causing mental health symptoms? Is the individual struggling?

Specific Issues Related to ID • Document observable/behavioral compulsions • Decrease in self-report of internal conflict/anxiety • May be unaware of societal disapproval and therefore this knowledge may not serve to reduce the behaviors • Complicated by co-occurring stereotypies, tics, dyskinesias, dystonias, akathisia, self-injury, selfstimulatory behavior • Most common compulsive behaviors - acts of cleanliness (Complicated in ID? )

Specific Issues Related to ID • More likely to demonstrate anxiety as opposed to reporting it • Compulsions that require abstract thought may not be possible (i. e. contamination or safety issues) and counting skills are variable. • Children and Adolescents: usu. ordering, checking and cleaning rituals; usu. at home; use caution depending on developmental stage (toddlers and preschool: may have rituals; school age: may use strict rules w games/activities)

Autism vs. OCD • Repetitive and stereotyped behavior patterns in ASD can be similar to compulsive symptoms • More typical of ASD: Regression, religious, contamination, symmetry, somatic content • More typical of OCD: Ordering, tapping, rubbing • May co-occur

Bio. Psycho. Social Factors • Neurotransmitters: serotonin and dopamine. • Syndromes: Prader Willi syndrome (PWS), Down syndrome, Fragile X syndrome (FXS), Cornelia de Lange and Williams syndrome • Adaptive functioning limitations with independence issues increase prevalence of all anxiety disorders • Psychosocial factors: low self-esteem, fear of failure, deficits in problem solving, dependency needs, social stigma, trauma history…

ACES Research The Adverse Childhood Experiences (ACE) Study is one of the largest investigations ever conducted to assess associations between childhood maltreatment and later-life health and well-being. The study is a collaboration between the Centers for Disease Control and Prevention and Kaiser Permanente's Health Appraisal Clinic in San Diego. (1995 -1997)

ACES Research • Surveys on childhood maltreatment, household dysfunction, and other socio-behavioral factors examined in the ACE Study. • CEQ designed by our group to reduce risk of retraumatization • IDD are more likely to experience trauma and increase in medical and neurologic conditions; this study will add to the prevalence data to establish best practices and increased prevention

ACES Pyramid

How IDD “Readjusts” the ACE Pyramid Risk ACE Pyramid (1998) IDD Impact • • • Layer 2: Social, Emotional & Cognitive Impairment – Present by definition with IDD in absence of trauma Layer 3: Adoption of Health Risk Behaviors – Challenges in “adherence” and necessary skills/ understanding as well as lower standard of care Layer 4: Disease, Disability, and Social Problems – Prevalence of Medical & Mental Health Conditions in absence of trauma

Ohio’s Telepsychiatry Project for Intellectual Disability § Funders: DODD, ODMHAS, ODDC § Telepsychiatry services initiated in 2012 § Virtual software which abides by patient privacy guidelines (HIPAA Compliant) § Prioritize individuals from Developmental Centers and State Psychiatric Hospitals

Ohio’s Telepsychiatry Project for ID • More than 90 engaged were discharged from state operated institutions and others were in danger of short-term admission. This saves the state approximately $80, 000/person/year in support costs. • The patients treated have experienced a decrease of 90% in emergency department visits and 87% in hospitalizations. • 775 patients/58 counties • Currently accepting referrals

Obsessions Mild/Moderate Severe/Profound Adaptation of Diagnostic Criteria--OCD Recurrent and persistent SAME thoughts, urges, or images that thoughts, urges, or images may are experienced, at some time not be experienced as intrusive during the disturbance, as and unwanted intrusive and unwanted, and that in most individuals cause marked anxiety or distress. The individual attempts to ignore or suppress such thoughts, urges, or images, or to neutralize them with some other thought or action (i. e. by performing a compulsion). May or may not attempt to ignore or suppress such thoughts, urges, or images, or to neutralize them with some other thought or action SAME May be unable to report wanting to ignore, suppress or neutralize the obsessions.

Compulsions Mild/Moderate Severe/Profound May be difficult to elicit due to cognitive deficits and limited expressive language skills. Consider ordering, telling, asking or repetitive physical acts (e. g. rubbing) as compulsions. Absence of compulsions that require abstract thinking less likely; observe individuals for compulsions requiring simple thinking, such as excessive ordering and filling/emptying. Adaptation Repetitive behaviors or mental acts that the individual feels driven to perform in response to an obsession or according to rules that must be applied rigidly. The behaviors are aimed at preventing or reducing anxiety or distress, or preventing some dreaded event or situation The function of the compulsive behavior may not be ascertainable; recognition of excessiveness or intent of the behaviors may not be present. The criteria regarding intent of the behavior does not apply to children, and does not apply to individuals with severe/profound intellectual disability.

Mild/Moderate Severe/Profound Adaptation The obsessions or compulsions are timeconsuming (e. g. take more than 1 hour per day) or cause clinically significant distress or impairment in social, occupational, or other important areas of functioning. Specify if: Good Insight, Fair Insight, Poor Insight or Absent/Delusional Beliefs Distress may not occur and/or may not be ascertainable. Intense preoccupation may be observed or drive to perform the compulsion may be observed. Challenging behavior, especially aggression, and self-injurious behavior, may occur if the individual is prevented from completing the compulsion. Specifiers should be applied in the context of the cognitive and developmental functioning of the individual.

Medications • Serotonin (SSRI, SNRI, TCA, Buspirone, Remeron, etc) • Dopamine (antipsychotic medications) • Benzodiazepines: More sensitive to cognitive side effects; hyperactivity; disinhibition; affects seizure threshold; paradoxical reactions • Adjunct agents: mood stabilizers, clonidine, naltrexone, beta blockers, etc)

Cory • 48 year old female with Moderate ID, Schizophrenia, OCD, Trauma history, Post-inst • Food, crafts, drinking water, changing outfits, retracing steps, light switch, boyfriends, etc. • Triggers: staff turnover, UTIs, change in rules • Interventions: Clozapine; SSRI • TIC; therapy; BSS; provider agency, SSA

Treatment • Provide guidelines/boundaries for the individual; Stick to them as a team • Reward/acknowledge when individual follows guidelines • Psychotherapy (supportive, cognitive, or behavioral) • Positive Behavioral Support • Trauma Informed Approaches • Be consistent (instills sense of safety)