Copyright 2015 Katherine Martinez 1
Understanding OCD and Other Anxiety Disorders in Individuals
with Down SyndromeKatherine Martinez, Psy.D., R.Psych 2036
Vancouver CBT [email protected]
October 24, 2015
Copyright 2015 Katherine Martinez 2
“Picture this: It’s time for bed. Say good night to each person, pet, and stuffed animal in the house. Walk to the bedroom, 48 steps, must end on an even number – wait is the back door closed? Go back and check. It is. Walk to the bedroom, 48 steps end on an even. Wait – when the backdoor was checked, did the front door maybe open? Go back and check. OK, front door is closed. Walk to the bedroom, 48 steps end on an even. Turn all the pillows facing the right way. Go into the bathroom and wash hands. Brush teeth. Okay, wash hands. Wait. Did I brush for 2 minutes? Brush teeth again for 2 minutes. Wash hands. Blow nose – really hard so I don’t stop breathing while I’m sleeping. Wash hands. Go to the bathroom. Wash hands. Turn off light with elbow since hands are washed. Get in bed, 8 steps end on even. Wait – did I flush the toilet? Go check. Yes, toilet is flushed. Wash hands. Turn off light with elbow. Get back in bed, 8 steps end on an even. Wait, did I say good night to everyone? Say good night to everyone again, just in case. Crazy, huh? No – it’s OCD.”
Excerpt from: Max Mickenberg’s essay about OCD at age 11 www.iocdf.org
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Obsessions are unwanted and disturbing thoughts, images or impulses that suddenly pop into the mind and cause a great deal of anxiety or distress.
Compulsions are deliberate behaviours (e.g. washing or checking) or mental acts (e.g. praying or repeating phrases) that are carried out to reduce the anxiety/distress caused by the obsessions. Copyright 2015 Katherine Martinez
What is Obsessive Compulsive Disorder (OCD)?
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Pure “O”: Likely very rare Obsessions and Compulsions combined, take up to an hour each day, minimum
Significant impairment in functioning Comorbid rates of OCD in individuals with Down Syndrome ranges from 1-4.5%
Copyright 2015 Katherine Martinez
What is Obsessive Compulsive Disorder (OCD)?
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Contamination Responsibility for harm to self or others
Symmetry and exactness A need for Perfection Doubt Forbidden/repugnant thoughts
**Level of InsightCopyright 2015 Katherine Martinez
Common Obsessions
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Washing and cleaning Checking Ordering and arranging Repeating Counting, tapping, touching, or rubbing
Mental compulsions Need to Confess Copyright 2015 Katherine Martinez
Common Compulsions
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Compulsions that require abstract thinking can be rare or absent in OCD in individuals with intellectual disabilities
When language is limited it decreases the likelihood of self-report of obsessive thoughts
Limitations in language and intellectual ability may require data to be supplemented by other informants, and to not rely solely on self-report measures
Sensory impairments will impact the presentation of OCD Anxiety is not a criteria for OCD and occurs even less so in
individuals with ID/DD than in the general population Individuals with ID and OCD may be more overt in their
display of compulsive behaviours as they may lack awareness of societal disapproval and thus need to “hide” sxs
Sxs may be ego-syntonic Copyright 2015 Katherine Martinez
Does OCD “look” different in individuals with Down
Syndrome & other Disabilities?
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Copyright 2015 Katherine Martinez
P.E.T. Scan Comparison
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Hoarding is classified under OC related disorders
Hoarding is comprised of three key features1. Ongoing and significant difficulty getting rid of
possessions regardless of their value; and strong urges to save and/or acquire new, often non-essential, items. When acquisition is prevented it leads to extreme distress.
2. Extreme clutter results from the acquisition and saving of items.
3. These behaviours causes significant impairment in functioning.
Copyright 2015 Katherine Martinez
What is Hoarding, and How Does it Relate to OCD?
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Body Dysmorphic Disorder Hoarding Disorder Trichotillomania (Hair-Pulling Disorder) Excoriation (Skin-Picking) Disorder Substance/Medication-Induced Obsessive-Compulsive
and Related Disorder Obsessive-Compulsive and Related Disorder Due to
Another Medical Condition Other Specified Obsessive-Compulsive and Related
Disorder Unspecified Obsessive-Compulsive and Related
Disorder Copyright 2015 Katherine Martinez
Obsessive Compulsive Related Disorders
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PANDAS: Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep
PANS: Pediatric Acute-Onset Neuropsychiatric Syndrome
Rapid onset OCD and/or Anxiety (particularly acute separation anxiety and irrational fears).
Emotional lability and/or depression. Irritability, aggression and/or oppositional
behaviors. Behavioral (developmental) regression. Sudden deterioration in school performance. Sensory or motor abnormalities (particularly
dysgraphia/ trouble with handwriting). Somatic/physical signs and symptoms.
Copyright 2015 Katherine Martinez
PANS/PANDAS
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Aren’t we all “a little OCD”? The truth about Intrusive Thoughts Hoarding vs. Collecting Developmental Norms OCD/ASD/DD/DS…
Focused Interests Self Stimulatory Behaviours Environments: Impoverished, Inconsistent, Lacking in Information
Copyright 2015 Katherine Martinez
The importance of Distinctions
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Disrupted routines - taking too long or repetition Poor work or academic performance due to
inattention and poor focus, or excessive slowness Social isolation Loss of interest in prior interests and activities
Re-reading, re-writing, & re-doing
Seeking repeated reassurance that things are right, ok, or acceptable
Checking- work, locker, backpack, phone, etc.
Lining up, ordering or arranging Frequent and lengthy bathroom use Copyright 2015 Katherine Martinez
The Many Faces of OCD
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Missing Time Excessive Slowness Routine Rituals Gone Awry Becoming Stuck Reassurance seeking Poor Attention or Focus Unexplained Anger or Sudden Aggression
Perpetual tardiness Bottom line: something is amiss or “off”
Copyright 2015 Katherine Martinez
Warning Signs for OCD
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What if this is just who he is? What if this is a new component of DS?
What if I’m a bad mum/dad/care provider/etc. if I interrupt her?
Copyright 2015 Katherine Martinez
Distinctions
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Many families begin accommodating long before they learn what it means
Accommodation versus compromise
Once OCD is in play, the goal is to reduce and then eliminate accommodation *everywhere*
Get accommodation on the hierarchy
Copyright 2015 Katherine Martinez
Accommodation
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Generalized anxiety disorder Social anxiety disorder Separation anxiety disorder Specific phobia Panic Disorder Post-traumatic/Stress Disorder
Copyright 2015 Katherine Martinez
Other Anxiety Disorders
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Defined as excessive and uncontrollable worry, more days than not about- the future, health of self & family, money matters, environment, current affairs, parents’ marriage or family stability, academic or athletic performance, punctuality, & more
Worry impacts not only thoughts and behaviours, but also physical sensations
2:1 female to male ratio, 3% prevalence rate Left untreated GAD is unlikely to lessen or go
away, and can create moderate to severe impairment in life functioning.
Copyright 2015 Katherine Martinez
Generalized Anxiety Disorder
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Defined as an excessive and persistent fear of social and/or performance situations such as school, parties, athletic activities, and more, where the person believes s/he will do something embarrassing
Onset in early adolescence although can start during the elementary school years. Can develop suddenly after a stressful or embarrassing experience, or slowly over time
Familial link 1:1 female to male ratio, 7% prevalence rate Some of the problems associated with SAD include
poor school or job performance, low confidence in social situations, trouble developing and maintaining friendships, depression, and alcohol or drug use.Copyright 2015 Katherine Martinez
Social Anxiety Disorder
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Defined as an extreme and excessive fear of being apart from loved one triggered by routine separations from parents or other important caregivers, causing the person to cry, cling, or refuse to part. A “normative” stage gone awry.
Onset of separation anxiety peaks at several points of development including with entry into Kindergarten, between ages 7-9, and again with either entry into Middle or High School.
1:1 female to male ratio, 4% prevalence rate SAD is the most common anxiety disorder in children under
12 years of age, with a gradual decrease in frequency as children mature into adolescence and adulthood. However, separation anxiety can continue into adulthood, or begin in adulthood.
Copyright 2015 Katherine Martinez
Separation Anxiety Disorder
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A phobia is an intense and unreasonable fear of a specific object or situation. This means having an extreme anxiety response towards something that is not causing immediate danger. Common phobias include insects, animals, situations, injury and more.
On average, specific phobias begin in childhood between 7-11, with most cases starting before age 10
2:1 female to male ratio, almost 9% prevalence rate Family link both genetically and environmentally Phobias are different than common childhood fears. While
young children generally become less afraid of things such as strangers, the bath, or the boogie monster, as they mature, children with phobias typically become more afraid as they mature. Furthermore, phobias rarely go away on their own.
Copyright 2015 Katherine Martinez
Specific Phobia
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The importance of a quality assessment
Recognizing the role of stress and external demands in the lives of individuals with DS/DD/ID
Asking, What’s the Function of this Behaviour? Normative? Developmental? Contextual? Copyright 2015 Katherine Martinez
What’s the Function?
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Poor insight: most of the time the person may not recognize that the obsessions and compulsions are excessive or unreasonable.
Developmental level impacts understanding and awareness.
The OC behaviours must create true interference.
Holistic assessment- r/o medication side effects Appears to be no Obsession
Look for “just so” need Appears to be no Compulsion
Look for mental rituals Copyright 2015 Katherine Martinez
Assessment of OCD in Individuals with Down
Syndrome and other Disabilities
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CY-BOCS (Goodman, 1989) Y-BOCS (Goodman, 1989) The Compulsive Behavior Checklist for
Clients with Mental Retardation [CBC], Gedye, 1992; 1996
The Obsessive Speech Checklist (OSC, Gedye, 1998)
The OCD Severity Scale (Vitiello et al., 1989) The Aberrant Behaviour Checklist (Aman,
1985)Copyright 2015 Katherine Martinez
Assessment Measures for OCD
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Best practice guidelines for the assessment and diagnosis of OCD in adults with ID using ICD-10 criteria include: The individual recognizes that their obsessions and
compulsions originate in their mind. They view them as being repetitive, unpleasant,
excessive, and unreasonable. The person tries to either resist thinking about the
obsessions, or engaging in the compulsions. There is no pleasure in thinking about the obsessions, or
engaging in the compulsions, but it may bring temporary relief.
There is clear interference with social functioning or the generation of stress.
Deb et al., 2001 Copyright 2015 Katherine Martinez
Diagnosing OCD in Individuals with Down Syndrome &/or ID/DD
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Effective Treatments for OCD and Anxiety Disorders include: Pharmacotherapy: SSRIs/SRIs Cognitive Behaviour Therapy (CBT)Exposure and Response Prevention (ERP)
Cognitive Therapy (CT)Copyright 2015 Katherine Martinez
What Next: Understanding what treatments have to offer
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Cognitive-behavior therapy is an active, problem-oriented treatment that seeks to identify and change maladaptive beliefs, attitudes, and behaviors that contribute to emotional distress
Copyright 2015 Katherine Martinez
Cognitive-Behavior Therapy (CBT)
28Copyright 2015 Katherine Martinez
Principles of CBT
Empirically-based Goal oriented Pragmatic and solution driven Collaborative Time efficient Balance of education and skills
acquisition, with practice and mastery
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Cognition
Affect/Physiology
Behavior
Copyright 2015 Katherine Martinez
30 Copyright 2015 Katherine Martinez
Core Treatment Modules
Psychoeducation Somatic control skills Cognitive training Exposure and Response Prevention Maintenance and Relapse prevention
31Copyright 2015 Katherine Martinez
Psychoeducation for OCD
Use the name or promote the shame- role of diagnosis Normalization and cultivation of hope
OCD as a neuro-bio-behavioural disorder OCD as comparable to diabetes or asthma
OCD “flavours” Metaphors:
Junk mail Party crashers run amok Bossy bully
Fear messages Small message when there should be none Big message when there should be a small one
Externalize the Problem
Copyright 2015 Katherine Martinez
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Copyright 2015 Katherine Martinez
Somatic Control Skills
Rationale: To provide the person with a basic knowledge of what is happening to increase his/her control over unexpected physiological arousal, and to break the connection between arousal and negative emotional states.
Skills: Progressive Muscle Relaxation Diaphragmatic Deep Breathing Imagery Training
34Copyright 2015 Katherine Martinez
Cognitive Training
Rationale: To teach the client alternative, and adaptive ways of thinking, interpreting, and perceiving their experiences, in order to shift faulty misappraisals.
Skills: Self-Instructional Talk Cognitive Restructuring Behavioural Experiments
Understanding how Thinking Impacts Feelings and Behaviours
Copyright 2015 Katherine Martinez
Awesome! I love science experiments-
it’ll be so much fun!
Oh no! This is awful- I’ll have to touch that germy
stuff.
36 Copyright 2015 Katherine Martinez
Cognitive Examples
Superhero cape Tic-tac-toe Dart gun Hand print on my heart Self-talk art Metaphors & self-disclosure
37Copyright 2015 Katherine Martinez
Behavioural Interventions
Rationale: To teach the individual alternative, adaptive options other than escape and avoidance; inertia; or, explosive behaviour. To correct the behavioural pattern of using rituals to seek relief.
Skills: Exposure Exposure Exposure
38Copyright 2015 Katherine Martinez
Evidence for the Conditioning Model of OCD
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Client,Therapist,
Case Worker,&
Relatives
OCDVS.
Making OCD the Enemy: Have a United Team
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Exposure Therapy Is…
A set of techniques designed to help clients confront situations that elicit excessive or inappropriate fear, anxiety, or discomfort
Intended to break the association between anxiety and perceived outcome of threat, or feared consequence
An opportunity for client to experience habituation and receive corrective informationCopyright 2015 Katherine Martinez 40
Educate about Exposure and Response Prevention (E/RP) Explain the habituation process Expect to feel anxious during ERP
Especially at the beginning
The distress is temporary
If the exercise is done properly (full exposure and no rituals or avoidance), anxiety will subside over time as your body has enough of the fight-flight feeling
Illustrate with car alarm or cold pool example and a graph…
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Effects of Repeated and Prolonged Exposure
Copyright 2015 Katherine Martinez 42
Hierarchy Development
Rationale: To obtain a baseline of client’s symptom severity and avoidance, and to lay the foundation for future exposure work (roadmap)
Develop hierarchy in session with client participation
SUDS rating to guide: 0-100 scale
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Copyright 2015 Katherine Martinez 44
Mapping My OCD
Copyright 2015 Katherine Martinez
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Hierarchy Development
Copyright 2015 Katherine Martinez
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Example: Contamination Hierarchy
10 Touch school door handles 15 Share school supplies with peer 45 Use toilet in school washroom & wash
hands 55 Share a bite of pizza with a friend 75 Place hand inside cafeteria trash can 85 Use toilet in school washroom #1 and
don’t wash hands 98 Use toilet in school washroom # 2 and
don’t wash hands Copyright 2015 Katherine Martinez 47
48 Copyright 2015 Katherine Martinez
Do’s and Don’ts from Loved Ones
Do be supportive- establish treatment
Do provide love and encouragement
Do provide corrective information
Don’t say “stop it!” Don’t participate in rituals
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Copyright 2015 Katherine Martinez
What is Family Accommodation
Taking a wide-lens view Am I repeating back too much? Am I accommodating rigid adherence to unhelpful routines? Am I buying too much X?
Rigidity versus flexibility Assess all aspects of the day/environment/people where accommodation is occurring
Place each part on the hierarchy and gradually work to eliminate all aspects
50 Copyright 2015 Katherine Martinez
Useful Links
www.iocdf.org International OCD Foundation
www.anxietybc.com Anxiety BC
www.abct.org Association for
Behavioural & Cognitive Therapies
www.adaa.org Anxiety Disorders Association of America
www.trich.org Trichotillomania Learning Center
51 Copyright 2015 Katherine Martinez
ReferencesAmerican Psychiatric Association: Diagnostic and Statistical Manual of Mental Disorders,
Fifth Edition, Text Revision (2013). Washington, DC, American Psychiatric Association.Capone, G., Goyal, P., Ares, W., & Lannigan, E. (2006) Neurobehavioral disorders in
children, adolescents, and young adults with Down syndrome. American Journal of Medical Genetics Part C (Seminars in Medical Genetics). 142C,158–172
Charlot, L. et al (2002). Obsessional slowness in Down's syndrome. Journal of Intellectual Disability Research, 46, 517-524.
Evans, D.W. & Gray F.L. (2000). Compulsive-like behavior in individuals with Down syndrome: It's relation to mental age level, adaptive and maladaptive behavior. Child Development, 71, 288-300.
Frost, R. O., & Steketee, G. (Eds.) (2002). Cognitive Approaches to Obsessions and Compulsions: Theory, Assessment, and Treatment. Oxford: England. Pergamon Press.
Piacentini, J., & Langley, A. (2007). Cognitive-Behavioral Treatment of Childhood OCD: It's Only a False Alarm Therapist Guide. New York, NY: Oxford University Press.
Rachman, S. (2006). Fear of contamination: Assessment and treatment. New York, NY: Oxford University Press.
Storch, E. A., Geffken, G. R., & Murphy, T. K. (2007). Handbook of Child and Adolescent Obsessive Compulsive Disorder. Mahwah: NJ. Routledge Press.
Sutor B, Hansen MR, Black JL. (2006). Obsessive Compulsive Disorder treatment in patients with Down syndrome: A case series. Down Syndrome Research and Practice. 10(1), 1-3.www.iocdf.org International OCD Foundationwww.anxietybc.com Anxiety BC