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.