lucille esralew, ph.d. clinical administrator sccat & s-cope trinitas regional medical center
DESCRIPTION
During today’s presentation you will learn about two youth who will guide our consideration of children with dual diagnosis: 10 year old Jared who places on the Autism Spectrum and suffers from significant co- occurring Obsessive Compulsive Disorder (OCD) 16 year old Stephanie who has Fetal Alcohol Spectrum Disorder (FASD) and co-occurring anxiety and impulse control disorder More about the two of them, later…TRANSCRIPT
UNDERSTANDING CHILDHOOD DUAL DIAGNOSIS (MI/DD): A
BRAIN-BEHAVIOR PERSPECTIVELucille Esralew, Ph.D.Clinical Administrator
SCCAT & S-COPETrinitas Regional Medical Center
Goals for Today’s Presentation Provide a brain-behavior perspective
while considering the challenges to children and adolescents with intellectual and developmental disabilities and co-occurring mental health disorders (MI/ID)
Identify strategies to promote independence and optimal functioning
Consider best practice implications for family and professionals supporting children with dual diagnosis (MI/DD)
Introducing Jared and Stephanie
During today’s presentation you will learn about two youth who will guide our consideration of children with dual diagnosis:
10 year old Jared who places on the Autism Spectrum and suffers from significant co-occurring Obsessive Compulsive Disorder (OCD)
16 year old Stephanie who has Fetal Alcohol Spectrum Disorder (FASD) and co-occurring anxiety and impulse control disorder
More about the two of them, later…
What is a developmental disability?
Any genetic disorder, medical condition, birth trauma, in utero damage to the developing fetus, accident that occurs during the developmental period (0-21) and results in multiple, life-long deficits that impair independent functioning:
In utero exposure to tetragons such as alcohol Birth defect resulting in Cerebral Palsy Genetic disorder such as Downs syndrome Viral encephalopathy resulting in cognitive
deficit
What is Intellectual Disability? FS IQ 55-69 Mild Impairment FS IQ 40-55 Moderate Intellectual Disability FS IQ 20-40 Severe Intellectual Disability FS IQ < 20 Profound Intellectual
ImpairmentThe most common form of developmental disability is ID of unknown etiology. Most individuals with ID are within the moderate to mild range and live in the community. The most common known inherited cause of ID is Fragile X
Diagnostic OvershadowingIs everything about I.Q. or developmental disorder? Once the child is known to have an
intellectual or developmental disability, this may obscure other important considerations:
The 17 year old male with Asperger’s who was denied admission to a CCIS on the basis of his linkage to DDD;
The 12 year old with FASD whose seizure disorder was overlooked due to her “behavioral presentation”
What is Dual Diagnosis MI/DD?
The co-occurrence of an intellectual or developmental disability and mental health disorder
Examples include:› The child with Cerebral Palsy and Bipolar I
Disorder› A child on the spectrum with OCD› The adolescent with Down Syndrome and
significant depression
Dual Diagnosis (MI/DD) Controversy as to whether or not developmentally
disabled children are more or less prone to psychiatric illness than general population
Children with IDD experience the same range of mental health problems as is found among typically developing children
Depending upon contraindications, individuals with IDD are treated with the same range of medications as is the general pediatric psychiatric population (possible that medicating begins earlier for IDD youth?)
Co-prevalence of disorders Autism and OCD Autism and Bipolar disorder Down Syndrome and depression and/or
dementia (> age 50) Fragile X and impulsivity/ rage issues Fetal Alcohol Spectrum Disorder and
impulse control disorder
Behavioral Phenotypes Select developmental disorders are
associated with characteristic behaviors termed “behavioral phenotypes”:
Autism and catastrophic reactions, narrow band of interest, stereotypies
Lesch-Nyan Syndrome and Cornelia deLange Syndrome and serious self-injury
Praeder-Willi and indiscriminant overeating (to point that can be life-threatening)
What complicates diagnosis ? Intellectual Distortion resulting in limited
ability to communicate emotional distress Psychosocial masking refers to limited social
experience which may influence psychiatric presentation
Cognitive Disintegration resulting in limited ability to tolerate stress
Baseline Exaggeration resulting in increase in maladaptive behaviors during times of stress
Behavioral Overshadowing refers to missing that behavior may reflect signs and symptoms of psychiatric or medical illness
Impact of MIDD on development
A mental illness is an overlay upon already existing deficits associated with the person’s developmental disability
This leads to problems in learning, peer relationships, behavior; eventually it will affect employment, community living and acquisition of age-appropriate adaptive skills
Adaptive Skills The lower the I.Q., the less likely the child
will acquire age appropriate self-help skills The lower the I.Q., the less likely the child
will learn age appropriate social and emotional coping skills
An assessment of adaptive skills is always needed to determine if the individual is developmentally disabled
Increasing emphasis in DSM-5 on functional impairment rather than intellectual disability
Language skills Individuals with disabilities may lack “theory
of mind” & exhibit poor social communication Individuals with IDD: may have a poorly developed vocabulary for
emotion resulting in limited capacity to convey distress
may be concrete in their communication, have difficulty drawing inferences and lack a sense of time—all leading to unreliable self-reports
May be minimally verbal or non-verbal
DSM Equivalents The criteria for mental health disorders listed
in the DSM may need to be adjusted to the psychiatric presentation of developmentally disordered adults
S/S of psychiatric disorders may include behavioral presentation (aggression, property destruction, self-injurious behavior) not typically seen in the non-IDD population
The DSM-5 will have a companion volume DM-ID 2 (currently being written)
Psychiatric versus Behavioral Problems
Psychiatric illness does not cause behavior problems, but may increase the frequency, intensity or duration of unwanted behaviors Unwanted/
maladaptive behaviors
Psychiatric illness
Poorly developed coping skills
Environmental triggers and
stressors
Behavioral Problems May Be Due to…
Learned maladaptive behavior Poor social and emotional coping skills Poor fit client-service fit Central nervous system dysfunction Psychiatric disorder Medical/drug-induced disorder
Using a Lifespan Perspective
To what extent does the child’s developmental disorder contribute to or further complicate psychiatric presentation?
To what extent can we offer opportunities and experiences so that the child enters adulthood better equipped to deal with the unique challenges of his/her dual diagnosis?
Remember: both developmental disorders and significant mental health disorders are usually life-long conditions
Importance of on-going assessment and problem solving Dynamic comprehensive assessment at
important points of transition (entering school, leaving elementary school, entering adult services)
Understand the distinction between “capacity” and “functionality”—spoiler alert: the second of the two is the more important!
What are the tasks of psychosocial development for the developing child?
How do we help the child with multiple disabilities negotiate important life tasks?
Autism Spectrum Disorder (ASD)
Group of neurodevelopmental disorders characterized by deficits in communication, socialization and restricted/repetitive behaviors:
Autism Pervasive Developmental Disorder (PDD) Asperger’s Syndrome (AS) Childhood Disintegrative Disorder Rett’s Disorder
Communication Impaired social and emotional reciprocity Deficits in Non-verbal communication Deficits in developing, maintaining and
understanding relationships
Restrictive and Repetitive Behaviors
Stereotyped movements, use of objects or speech
Insistence on sameness; inflexible adherence to routine
Highly restricted, fixated interests Hyper-hypo sensitivity to sensory input
Neurocognitive Deficits of ASD Impaired higher level cognitive shifting Deficits in memory, planning, inhibition,
flexibility and self-monitoring Weak central coherence: poor ability to
integrate information from environment into a meaningful whole; tendency to focus on details at the expense of global meaning
Decreased motivation to orient to social stimuli
Theory of Mind (ToM) deficits
Life Challenges for Youth on the Spectrum
Limited adaptive skills Limited social supports Co-occurring medical problems (seizures,
gastric problems) Co-occurring mental health disorders
(Bipolar, Anxiety, OCD, specific phobias) Problems obtaining and maintaining
employment due to limited social skills and tolerance of change and environmental stressors
Jared 10 year old male with Asperger’s
syndrome and co-occurring Obsessive Compulsive Disorder, currently being treated with an SSRI. Overall health is good, no chronic medical conditions.
Attends regular classes in public school school and has been the target of on-going bullying
No friendships outside of the family Limits activities to work and in-room
computer use
Jared As a very young child: Difficult to comfort Had gastrointestinal problems Developmental milestones on schedule Very clingy to Mom Showed an interest in peers but tended to
stay to self Gross motor problems—could not learn
how to ride a bicycle, difficulty throwing and catching a ball, etc.
Evident from early age and likely to follow him into the future…
Narrow range of interests and activities (dinosaurs, video games)
Social skills deficits and social anxiety Heavy reliance on family Talented artist but unlikely to advance his
talents without family support Vulnerable to manipulation by others because
of poor theory of mind Fast forward: what happens to him as he
progresses through school and enters adulthood?
Jared’s Challenges Social Pragmatic Communication
problems Jared and his encyclopedic knowledge of
dinosaurs! Rigidities in thinking, difficulty with novel
situations and making transitions Uncomfortable about relating to anyone
other than family members Significant obsessions and compulsions
that further limit him
Fetal Alcohol Spectrum Disorder (FASD)
Umbrella term that encompasses: Fetal Alcohol Syndrome (FAS) Fetal Alcohol Effect (FAE) Alcohol Related Birth Defects (ARBD) Alcohol Related Neurodevelopmental
Disorder
Alcohol is a teratogen that passes through the placental barrier and affects the developing fetus and affects development through lifespan
Cognitive Deficits and FASD
Leading cause of preventable intellectual disability
Learning problems including lower performance on reading, spelling and math
Auditory and visual attention deficits Verbal learning and memory problems Problems with comprehension of high order
language: metaphors, sarcasm idioms, pragmatic language
Executive Dysfunction: organization, cognitive flexibility, verbal concept formation, response inhibition
Life Challenges of children with FASD
Higher likelihood of school failure/dropping out
Inability to secure or hold employment Co-occurring mental health problems
( ADHD, ODD, CD, OCD) Delinquency or involvement with the law
because of impulsivity and poor social judgement
Adaptive Behavior Challenges for Children with FASD
Youth with FASD more likely to be restless, impulsive, inattentive, disruptive or aggressive
More likely to have social boundary problems
May be perceived as socially intrusive Lack awareness of social dangers Lack social judgement Difficulty learning and generalizing from
social experiences
Stephanie 16 year old female with Mild Intellectual
Impairment (FSIQ 68), Fetal Alcohol Syndrome, highly impulsive and anxious
She is in special education classes and has an IEP that includes behavioral support in the classroom
She can function well with routine but highly stress sensitive; she is concerned about her appearance
She is athletic Frequent ER visits and at least one hospitalization
because of aggressive behavior
Stephanie As a very young child: Hyperactive/hyperkinetic Limited attention span Difficult to manage Not accepting of reasonable limits Learning problems Significant behavioral problems
Evident from early age and will follow her into the future…
Learning problems Impulsive, short attention span Anxious Difficulty with rule governed behavior Poor social judgement Limited self-control both emotionally and
behaviorally Is independent in ADLs but needs
supervision because of her poor judgement and impulsivity
How do we increase functionality?
Build upon strengths and accommodate limitations or deficits
Encourage the child to be as independent as possible within limits feasible, given age and capabilities
Educate to the unique challenges of the child’s developmental disability and mental health disorder as soon as possible
Gear education and preparation to youth’s level of understanding
How to help? Children need to learn how to be with
others Children need to learn how to accept
direction and assistance from adults whose role is to help
Children need to learn to take responsibility (for one’s things, for one’s behavior, for one’s health) in ways that are age appropriate and feasible given the person’s capabilities
The Behavior Specialist The Behavior Interventionist should be
someone who knows about the principles of learning and how to apply learning theory to develop a plan that reduces unwanted behavior and increases adaptive replacement behaviors/skills
ABA, Positive Behavior Support The Behavior Interventionist needs to work
alongside the child, family and staff in order to increase everyone’s competencies in dealing with stressors
Counselor?
Works with the child in building social and emotional coping skills
Helps the youth develop more effective coping strategies to deal with everyday hassles and stressors
Works with the child to incorporate relaxation, anger management and anxiety management and related coping techniques into daily activity
What can we expect for Jared and Stephanie as they age?
Jared can develop more adaptive social skills and get effective treatment for his OCD. Although he may never feel spontaneous in his dealings with others, he should be able to develop friendships, work or continue his schooling. He should be able to live independently with supports in the community
Stephanie can develop coping skills to offset her impulsivity and better manage her anxieties and behavior. She may need medication. With the right supports, she should be able to work, live in the community and pursue relationships
What will Jared need for optimal functioning and QoL?
Opportunities to develop social interactional and relationship maintaining skills
Opportunities to meet peers Medical and non-medical treatment of his
Obsessive Compulsive Disorder A workable daily structure Encouragement of his talents and
interests Contact with his family Meaningful work and daily activity
What will Stephanie Need for Optimal Functioning and QoL?
Academic supports to acquire basic skills Behavioral shaping to obtain better
control over her impulsive responding (particularly aggression)
Development of age appropriate coping with anxiety and stressors
Possible medication management for her anxiety as adjunct to non-pharmacological Rx
Opportunities to meet peers, pursue interests and build self-esteem
Take AwaysChildren and Adolescents with dual diagnosis face complex, life-long challenges related to their developmental disabilities and their mental health disorders: They need comprehensive assessment and monitoring to
follow the trajectory of their development They need opportunities to build skills and obtain
accommodations in areas of weakness and build upon areas of strength
They need uniquely tailored scaffolding to promote their independence and optimal functioning
Today’s dually diagnosed youth are tomorrow’s adults with dual diagnosis; they need to be adequately equipped to enter adulthood
References Beasley, J.B. & Kroll, J. The START/Sovner
Center Program in Massachusetts. In R.H. Hanson, N.A. Wiesler & K.C. Lakin (Eds.), Crisis Prevention and Response in the Community (pp.97-125). The American Association on Mental Retardation Press, 2002.
Fletcher, R., Loschen, E., Stavrakaki, C., Lecavalier, L., First, M. (Eds.) (2007). Diagnostic Manual-intellectual disability: A textbook of diagnosis of mental disorders in persons with intellectual disability. Kingston, NY: National Association for the Dually Diagnosed.
References Jacobstein, D.M., Stark, D.R., & Laygo
R.M. (2007). Creating responsive systems for children and with co-occurring developmental and emotional disorders. Mental Health Aspects of Developmental Disabilities, 10, 91-98.
Ruedrich, S., Dunn, J., Schwartz, S. & Nordgren, L. (2007). Psychiatric resident education in intellectual disabilities: One program’s ten years of experience. Academic Psychiatry, 31, 430-434.