ADDRESSING SEXUAL BEHAVIORS OF ADOLESCENTS WITH DEVELOPMENTAL DISABILITIES

1. ADDRESSING SEXUAL BEHAVIORS OF ADOLESCENTS WITH DEVELOPMENTAL DISABILITIES Dr. Kristina Osborne-Oliver, Psy.D., NCSP Dr. Katrina Emmerich, Psy.D. Dr. Jennifer Brooks, Psy.D. Tylea S. Gebbie, MS, CAS St. Anne Institute, Albany, NY http://www.stanneinstitute.org/ Presentation Prepared for NYSATSA 2010 Conference May 4, 2010

2. Agenda: Topics to Be Covered • Introduction and Definitions of Developmental Disabilities • Autism Spectrum Disorders, Intellectual Disabilities, & Learning Issues • Research on Observable Behaviors, Social Skill Deficits, and Sexualized Behaviors • Treatment Delivery: General Strategies • Evidenced-Based Specialized Treatments recommended for this population • Pharmacological • Educational/Behavioral Approaches • Recommendations of Targeted Social Skills within Sexual Education Curriculum • Specific Intervention Ideas for Therapy with Clients with Developmental Disabilities • Resource List

3. Introduction & Definitions

4. DSM-IV-TR Diagnostic Criteria:Pervasive Developmental Disorders Pervasive Developmental Disorders (PDD) Asperger’s Disorder Autistic Disorder Rett’s Disorder Childhood Disintegrative Disorder Pervasive Developmental Disorder – Not Otherwise Specified The term “Autistic Spectrum Disorders” (ASD) is often used interchangeably with PDD

5. DSM-IV-TR Diagnostic Criteria:Asperger’s Disorder A. Qualitative impairment in social interaction, as manifested by at least two of the following: 1. Marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction 2. Failure to develop peer relationships appropriate to developmental level 3. Lack of spontaneous seeking to share enjoyment, interests, or achievements with other people 4. Lack of social or emotional reciprocity

6. DSM-IV-TR Diagnostic Criteria:Asperger’s Disorder (continued) B. Restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following: 1. Encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus 2. Apparently inflexible adherence to specific, nonfunctional routines or rituals 3. Stereotyped and repetitive motor mannerisms 4. Persistent preoccupation with parts of objects

7. DSM-IV-TR Diagnostic Criteria:Asperger’s Disorder (continued) C. The disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning. D. There is no clinically significant general delay in language E. There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior (other than social interaction), and curiosity about the environment in childhood. F. Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia.

8. How is Asperger’s Disorder Different from Autistic Disorder? The criteria for Autistic Disorder are essentially the same as Asperger’s Disorder with the exception that there are criteria for qualitative impairment in communication for Autistic Disorder: Qualitative impairments in communication as manifested by at least one of the following: A. Delay in, or total lack of, the development of spoken language B. Individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others C. Stereotyped and repetitive use of language or idiosyncratic language D. Lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level There must also be delays in abnormal functioning in at least one of the following areas, with onset prior to age 3 years: (1) social interaction, (2) language as used in social communication, or (3) symbolic or imaginative play.

9. DSM-IV-TR Diagnostic Criteria: Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS) Severe and pervasive impairment in the development of reciprocal social interaction Associated with impairment in either verbal or nonverbal communication skills or with stereotyped behaviors, interests, and activities Criteria are not met for a specific Pervasive Developmental Disorder, Schizophrenia, Schizotypal Personality Disorder, or Avoidant Personality Disorder.

10. Asperger’s Disorder: Social-Emotional Domain Strengths Capable of learning social skills Motivated to learn social skills Encode social situations visually Follow the rules Adult relationships/friendships may be established Innocence and honesty Weaknesses Poor social cognition Poor appreciation of social cues Minimal eye contact, affect/facial expression, showing/sharing, smiling Inability to see from another’s perspective Lack of social reciprocity Failure to develop peer relationships Overly sensitive to criticism May become rigid/anxious under stress May experience rage and/or depression

11. Asperger’s Disorder: Cognitive Domain Strengths No clinically significant delay in cognitive development Average, above average, or gifted Excellent rote memory Excellent visual memory Concrete thinking Good long-term memory Good reading mechanics Weaknesses Rigid thinking (one track mind) Difficulty shifting attention Poor auditory processing skills Difficulty with abstract thinking Problems with organization/planning Hyperlexia, comprehension, writing problems Failure to generalize/transfer thinking/skills to other situations

12. Why is it important to be familiar with Autism Spectrum Disorders (ASDs) when providing services to individuals? The nature of therapy Verbal vs. Nonverbal Auditory vs. Visual The nature of the client Those who have been sexually abused Reactions to abuse Group work Those who sexually act out Victim empathy Group work

13. Definition of Intellectual Disability (ID) “Intellectual disability (ID) is characterized both by a significantly below-average score on a test of mental ability or intelligence and by limitations in the ability to function in areas of daily life, such as communication, self-care, and getting along in social situations and school activities.” Sometimes referred to as a cognitive disability or mental retardation Children with ID can and do learn new skills, but they develop more slowly than children with average intelligence and adaptive skills. There are different degrees of ID, ranging from mild to profound. (Centers for Disease Control and Prevention, 2005)

14. DSM-IV-TR Diagnostic Criteria:Mental Retardation Significantly subaverage intellectual functioning: IQ of approximately 70 or below on individually administered IQ test Concurrent deficits or impairments in present adaptive functioning in at least two areas Onset before 18 years of age

15. Degrees of Mental Retardation Mild Mental Retardation Moderate Mental Retardation Severe Mental Retardation Profound Mental Retardation

16. DSM-IV-TR Diagnostic Criteria:Learning Disorder “Learning Disorders (LD) are diagnosed when the individual’s achievement on individually administered, standardized tests in reading, mathematics, or written expression is substantially below that expected for age, schooling, and level of intelligence. The learning problems significantly interfere with academic achievement or activities of daily living…” LDs may persist into adulthood Prevalence estimates range from 2-10% of the general population, and 5% of the school population

17. Part 200 Classification Criteria:Learning Disability Learning disability (LD) means a disorder in one or more of the basic psychological processes involved in understanding or in using language, spoken or written, which manifests itself in an imperfect ability to listen, think, speak, read, write, spell, or to do mathematical calculations…The term includes such conditions as perceptual disabilities, brain injury, minimal brain dysfunction, dyslexia and developmental aphasia.  The term does not include learning problems that are primarily the result of visual, hearing or motor disabilities, of mental retardation, of emotional disturbance, or of environmental, cultural or economic disadvantage.” Response to Intervention (RTI)

18. Common Cognitive Deficits Attention – the ability to tune in and concentrate Perception – the ability to make sense of and understand information Memory – the ability to acquire, hold, and retrieve information Comprehension – the ability to understand what is being said Expression – the ability to communicate Coping with change – flexibility

19. Why is it important to be familiar with Intellectual and Learning Disabilities when providing services to individuals? Throughout the twentieth century, there was a public perception that there was a link between ID and sex offending Research has reported higher rates of abuse amongst people with ID Furey (1994) examined 461 cases of sexual abuse and found that 42% of abuse had been perpetrated by individuals with ID Less attention has been paid to young people with ID whose sexual behavior is problematic Evidence that LD is over-represented in services for sexual offenders Individuals with LD are among the most challenging for services and practitioners

20. Methodological Issues • Inclusion criteria (IQ cut-off) • At what point are individuals with ID expected to understand societal rules? • Source of the sample • Typically drawn from hospitals, prisons, referrals to court, police stations, social and health service referrals • Of 57,000 individuals assesses for the courts in New York, 2.5% had ID • A study of individuals in hospitals found that 35% were diagnosed as having ID • Method of determining ID • Variety of IQ tests • Variety of methods for diagnosing ID • Scrutiny of records and history may vary

21. Treatment Outcomes for Clients with LD Research suggests that there is a relationship between outcome and length of treatment Day (1993) found a positive relationship between length of stay over 2 years and a better outcome Lindsay & Smith (1998) found that individuals in treatment for less than one year showed significantly poorer progress and were more likely to reoffend than those treated for at least 2 years Variables associated with recidivism Allowances made by staff Antisocial attitude Poor relationship with mother Denial of crime Sexual abuse in childhood Erratic attendance Poor response to treatment Low self-esteem Lack of assertiveness Offenses involving violence

22. RESEARCH: WHAT WE KNOW ABOUT OUR CLIENTS WITH DEVELOPMENTAL DISABILITIES

23. General Observable Behaviors of Clients with Developmental Disabilities Standing too close to someone during conversation Staring inappropriately Lack of eye contact Flat or inappropriate facial expression Getting ‘stuck’ on a particular topic during conversation ‘Stimming’ behaviors such as rocking or hand-flapping

24. Sexually-Related Behaviors of Clients with Developmental Disorders • Research has found that individuals with developmental disabilities may display sexually inappropriate behavior, including: • Masturbating in public • Kissing strangers • Removing clothing in public • Touching others inappropriately • Touching their own private areas in public • Sexual fetishism

25. Additional Information Regarding the Sexually-Related Behaviors of Clients with Developmental Disorders Greater tendency to sexually aggress: Lack of privacy More impulsive --Often in Public Settings Naiveté - Inability to understand normal sexual relationships More likely to present with less serious or intrusive offenses resulting in serious bodily harm, violence, or death More likely to commit sex offenses across categories and be less discriminating in their victims More likely to commit sex offenses against younger children and male children Sex crimes are seen as part of a pattern of poorly controlled behavior rather than sexual deviation “Abuse without abuser” - Initiator of an abusive sexual act does not understand the concept of consent or the impact of the behavior on others.

26. How Impairments Impact the Sexual Interactions of Clients with Developmental Disabilities Difficulties in the following areas: 1. Forming effective relationships with peers 2. Learning adaptive social behaviors in an unstructured fashion 3. Reading social cues (both subtle and overt) 4. Interpreting the other person’s feelings 5. Taking another person’s perspective 6. Being flexible in conversational topics Those difficulties may lead to: 1. Lack of appropriate sexual outlet; considering younger children “safer” to interact with; 2. Inappropriate social interactions; sharing interests/perseverations with younger children; 3. Misinterpretation of another’s body language; 4. Misinterpretation of another’s friendship or loving feelings as sexual; 5. Inability to empathize with victims (“How should I know how she felt?”); 6. Obsessing/perseverating on sex and/or pornography

27. Additional Hypotheses Regarding the Cause of Sexually Inappropriate Behavior Among Clients with Developmental Disabilities Structural Modeling Behavioral Partner Selection Inappropriate Courtship Sexual Knowledge Perpetual Arousal Learning History Moral Vacuum Medical Medication Side-Effect

28. Differentiating Inappropriate from Deviant Sexual Behaviors • Researchers offer insight into the differentiation of inappropriate sexual behavior from deviant sexual behavior. • Inappropriate sexual expression may result from default as the only allowable expression of sexuality. • Deviant behavior, however, has causes, although not clear in any population, that are similar to deviant behavior found in the non-developmentally delayed population.

29. Sexual Victimization of Clients with Developmental Disabilities How could it happen? Social deficits may increase vulnerability Misinterpreting non-verbal cues Language deficits may increase vulnerability Misunderstanding language Some developmental disorders are co-morbid with anxiety and/or depression These symptoms may appear or worsen following a traumatic event Children with some developmental disabilities tend to be oversensitive to criticism. Self-blame may be particularly problematic Social and language impairments may impact understanding of the abuse

30. DELIVERY OF THERAPY SERVICES:GENERAL TREATMENT STRATEGIES

31. Treatment Guidelines Treatment should be multidimensional Individual therapy Group therapy Close involvement of caretakers Supportive framework to monitor and reinforce key messages Focus on the control of elimination of abusive sexual behaviors by: Identifying positive goals Enhancing social and relationship skills Promoting life skills and phased community access Create a control plan or relapse prevention plan Create Risk Management Groups Multidisciplinary team approach Make decisions regarding mobility, levels of supervision, and community access Constituency may evolve as the young person’s circumstances change

32. Structure of Therapy Sessions People with developmental disabilities do better when things are predictable and organized Temporal supports Visual timers, stopwatch, schedules, routines Procedural supports Outline the steps of an activity Spatial supports Provide information about the location of objects Assertion supports Help individual initiate and exert control such as in making choices and maintaining self-control Provide them with a clear overview of the treatment process including the contents, frequency, duration, and place of the sessions and treatment

33. Interventions with Clients with Developmental Disabilities Interventions should: Be consistently modeled and supported throughout the external environment Be practical and success oriented Be at the client’s developmental level Be created with and prompted by the client How will they benefit from the intervention Increases motivation to participate in treatment Involve role-play and rehearsal Give the client something tangible to take with them once that skill is mastered

34. General Therapy Considerations Engagement – show interest in the clients interests and perseverations and allow them to speak at length about them Pay attention to the environment – reduce distracting noises, florescent lighting Praise success – help them to be mindful of their strengths Use multiple modalities – journaling, story-writing, drawing, role-plays Deliver information at the client’s pace Give information in parts Plan breaks

35. General Therapy Considerations Provide frequent repetition of concepts Take time to find the motivation behind the behavior Example: Unzipped fly Assist adolescents in generating and taking ownership of information In the past, fear of “giving the wrong answer” may have resulted in repeated failure and negative self-evaluation If the client does not understand something Do the task with them – help them “connect the dots” Give hints – help point the way Say directions in a different way

36. Language and Communication Clients with developmental disabilities may: Use the wrong terms or words Misuse time concept words Confuse sexes or persons in a sentence Parrot commonly used treatment terms Therefore: Clarify everything Ask yourself – “Does the client really mean what they are saying?”

37. Language and Communication Your use of verbal and non-verbal communication is very important Therefore: Use communication that is clear, concrete, and specific Be concrete, not abstract Avoid the use of jargon Check in frequently with the client Convert therapeutic terms into plain language – define in simple terms Draw attention to non-verbal communication and use them as teaching moments Example: Instead of saying “you seem upset” You might say “I notice your arms are crossed and you are frowning. That tells me that you are upset, am I right?”

38. Information Processing Clients with developmental disabilities can be slow processors of information Therefore: Not responding ≠ Being oppositional Give them additional time to process what you have said Do not yell or hurry them If taking time to respond do not assume that they are filtering or editing their response

39. Generalization Clients with developmental disabilities have difficulty generalizing – taking what you have taught them in therapy and using it in real life situations Therefore: Use concrete, vivid, and personalized examples Do role-plays Create scenarios that involve multiple settings Take the client out in public Best way to help a client to generalize

40. Checking their Comprehension Clients with developmental disabilities may present as much higher functioning than they really are For example - May nod their head or answer “yes” when you ask “do you understand?” Therefore: Talk in short, ten (at the most) word sentences Ask the client to repeat what you have said in their own words Ask the client to give you an example, what they have learned, or how they will change their behavior next time

41. Working with Clients in Groups Groups can be beneficial to clients with developmental disabilities Provides a safe environment for learning Provides practice in social skills and communication Need to ensure that the group is safe for all members Clients are vulnerable to being teased, bullied, or ridiculed by peers Conflict, bullying, or misunderstanding between a client with a developmental disability and other group members can greatly damage group cohesion

42. Working with Clients in Groups Strategies for increasing involvement Keep groups active will retain more and increase interest in coming to group Make sure the client walks away with something after every session Focus on simple themes Incorporate experiential modalities Drama/play, sand tray, art therapy, music, role play, storytelling, etc. Have them do something during group Write on the board, talking stick

43. Working with Clients in Groups Role of the Group Leader Facilitator may act as a ‘translator’ between these clients and the other group members May need to: Decode the non-verbals of other group members and explain them Point out what might not be obvious Interpret what the client says to other group members if it is needed to prevent misunderstandings

44. Evidence-Based Treatment Recommendations

45. WHY IS EVIDENCE-BASED SPECIALIZED TREATMENT LIMITED FOR THIS POPULATION? Issues: • There is no controlled study of any kind, because researchers can’t ethically provide a no-treatment condition • There is little research on community-based programs

46. Psychopharmacological treatments • Direct hormonal intervention to control urges by reducing the effect of sex hormones • Treatment of excessive Masturbation • Lupron (leuprolide), a synthetic nonpeptide analog of human gonadotropin-releasing hormone. • Side effects of aggressive behaviors • Indirect intervention directed at comorbid conditions, such as aggression, impulsivity, and psychiatric disorders that may affect sexual disinhibition

47. Psychopharmacological treatments • Remeron (mirtazapine) is a second-generation antidepressant that has both noradrenergic and serotonergic properties. • Rationale for selecting this drug was for its previously reported antilibidnal effect. • Also has an anticompulsive effect. • SSRIs tend not to be chosen, especially with clients with hyperactivity, irritability, and aggression. • Remeron has found to be effective in the treatment of • Excessive masturbation • Sexual fetishism • Further, placebo-controlled, double-blind studies are needed regarding this topic

48. Coskun et al (2009) Study • 5 participants showed very much improvement; 3 participants show much improvement, and 1 showed moderate improvement in excessive masturbation. • Side effects included appetite increase; weight gain; and sedation. Other possible side effects could include increase thirst, urination, and one participant experienced a hand tremor. • Other improvements were a decrease in engagement of touching women inappropriately, disrobing in public, and fetishistic behaviors.

49. recommended educational & Cognitive-behavioral approaches

50. Cognitive-Behavioral Treatment Cognitive-Behavioral Treatment - increasing knowledge base and skill acquisition • Behavioral Targets • Daily living skills • General interpersonal and educational skills (e.g., social skills, sex education) • Specialized behavior skills relating to sexuality and offending • Relapse prevention • Cognitive Targets • Embarrassment • Denial • Minimization • Problems with self-esteem • Problems with communication Anger Management • Adequate evidence to suggest that anger and violence are highly significant problems in this population and that treatment incorporating CBT and anger management will promote self-regulation and reduce violent incidents