understanding ocd and other anxiety disorders in individuals with down syndrome katherine martinez,...

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


“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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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.


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.


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


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”


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?


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


Accommodation

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Generalized anxiety disorder Social anxiety disorder Separation anxiety disorder Specific phobia Panic Disorder Post-traumatic/Stress Disorder


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.


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.


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.


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


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


30 Copyright 2015 Katherine Martinez

Core Treatment Modules

Psychoeducation Somatic control skills Cognitive training Exposure and Response Prevention Maintenance and Relapse prevention


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


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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


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


Awesome! I love science experiments-

it’ll be so much fun!

Oh no! This is awful- I’ll have to touch that germy

stuff.


Cognitive Examples

Superhero cape Tic-tac-toe Dart gun Hand print on my heart Self-talk art Metaphors & self-disclosure


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


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


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…


Effects of Repeated and Prolonged Exposure


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


Mapping My OCD


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Hierarchy Development


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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


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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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


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

http://www.iocdf.org/

http://www.anxietybc.com/

http://www.abct.org/

http://www.adaa.org/

http://www.trich.org/


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

http://www.iocdf.org/

http://www.anxietybc.com/

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