1. Lucille Esralew, Ph.D. Clinical Administrator SCCAT & S-COPE Trinitas Regional Medical Center

2.  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)

3.  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…

4.  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

5.  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 Impairment The 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

6. Is 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”

7.  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

8.  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?)

9.  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

10.  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)

11.  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

12.  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

13.  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

14.  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

15.  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)

16.  Psychiatric illness does not cause behavior problems, but may increase the frequency, intensity or duration of unwanted behaviors Unwanted/maladaptiv e behaviors Psychiatric illness Poorly developed coping skills Environmental triggers and stressors

17.  Learned maladaptive behavior  Poor social and emotional coping skills  Poor fit client-service fit  Central nervous system dysfunction  Psychiatric disorder  Medical/drug-induced disorder

18. 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

19.  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?

20.  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

21.  Impaired social and emotional reciprocity  Deficits in Non-verbal communication  Deficits in developing, maintaining and understanding relationships

22.  Stereotyped movements, use of objects or speech  Insistence on sameness; inflexible adherence to routine  Highly restricted, fixated interests  Hyper-hypo sensitivity to sensory input

23.  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

24.  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

25.  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

26.  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.

27.  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?

28.  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

29.  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

30.  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

31.  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

32.  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

33.  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

34.  As a very young child: Hyperactive/hyperkinetic Limited attention span Difficult to manage Not accepting of reasonable limits Learning problems Significant behavioral problems

35.  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

36.  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

37.  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

38.  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

39.  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

40.  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

41.  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

42.  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

43. Children 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

44.  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.

45.  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.