1. Maltreatment in Children with Developmental Disabilities Peter Della Bella, MD Clinical Assistant Professor NYU School of Medicine AACAP Annual Conference, Orlando, 10/27/2013

2. Child psychiatrist previously with Administration for Children’s Services, New York City 17 years with a large NYC non-profit serving people with developmental disabilities I have no financial relationships to disclose Background

3. Outline Maltreatment in Children with Developmental Disabilities Definitions & Background Epidemiology Risk and predictors: ID, then autism Prevention/Treatment

4. Disabilities: medical terms Disabilities – Acquired Disabilities – Developmental Disabilities (DDs) Intellectual disabilities (IDs) Autism Spectrum Disorders (ASDs) Others (cerebral palsy, severe epilepsy, other neurological impairments and genetic syndromes)

5. DDs: impairment 3+ functional areas Self-care Self-direction Independent living skills Economic self-sufficiency Mobility Learning Receptive/expressive language Social functioning Leisure functioning

6. DDs and Social Perceptions Resnick : “The Social Construction of Disability” Blum (ed.), 1984. Chronic Illness in Childhood and Adolescence. Grune & Stratton

7. Children with developmental needs are known to be at higher risk of all forms of maltreatment. What are the numbers?

8. Prevalence - disabilities All Disabilities US prevalence 10-25% (Goldson, 1998) Developmental Disabilities US prevalence 14% of 3-17 yrs (CDC, 2011) – Intellectual disabilities (ID) US prevalence ~1% (King, 1997) – ASDs US prevalence ~1.1% of 8 yr olds (CDC, 2012) What about maltreatment in these populations?

9. Making the connection 1940 Connection between disability and maltreatment Von Hentig, Journal of Criminal Law and Criminology 1967 50% of abused children have cognitive disabilities Elmer & Gregg, Pediatrics

10. 1 of 6 sexually abused children have a disability (National Conferences on Child Abuse and Neglect, 1993) 3.1-7.7 x Rates of maltreatment of children w IDs compared to others (Verdugo, et al, 1995; Sullivan and Knutson, 2000) Disability and maltreatment

11. 67% of all women with physical & IDs suffer physical abuse (Powers, et al, 2002, J of rehabilitation) 83% of adult females with DDs and 32% of adult males with DDs are sexual assault victims (Johnson & Singler, 2000, J interpersonal violence) Only 3% of sexual assaults in the DD population are reported (Valenti-Heim, Schwartz, 1995. The Sexual Abuse Interview for those with Dev Disabilities) Disability and maltreatment

12. 49% of people with DDs who are victims of sexual violence will experience 10 or more abusive incidents (Valenti-Heim, Schwartz, 1995) 88-98% of sexual abusers are known to the person with a DD (Sobsey and Mansell, 1994, Baladerian, 1991. Sexuality and Disability) 33% of abusers are acquaintances, 33% family or foster family, 25% are caregivers or service providers (Sobsey, 1988) Disability and maltreatment

13. Rates of maltreatment in children? Disabled children ~ 2x rate all forms of maltxmt Cross, et al (National Ctr on Child Abuse & Neglect, 1993) Special ed children in Omaha ~3x rate (31% to 9%) of maltxmt, compared to non-disabled school age children Sullivan & Knutson, (Child abuse & neglect, 2000) Developmentally disabled children 4-6x rate Ammerman, 1989, 1994; Newport, 1991; Westcott, 1993 Autism?

14. Rates of abuse in autism? 18.5% physically abused 16.6% sexually abused 2005 David Mandell analysis of national data from SAMHSA (based on caregiver report) >9000 youth, 156 children with autism Mandell et al, 2005, Child abuse & neglect

15. Who was maltreated? 31% maltreated special ed children in Omaha > half had behavioral disorders > third had speech & language disorders > quarter had intellectual disabilities Sullivan & Knutson, (Child abuse & neglect, 2000)

16. What types of maltreatment? Omaha study on children in special ed: – 3.88x emotional abuse – 3.79x physical abuse – 3.76x neglect – 3.14x sexual abuse – Most had more than one form Sullivan & Knutson, (Child abuse & neglect, 2000)

17. Risk factors PHYSICAL ABUSE SEXUAL ABUSE INDIVIDUAL SOCIETAL

18. Individual risk factors for PHYSICAL ABUSE – Insecure attachment (theorized) – Lack of maternal social support – # of family stressors Brown, 1986; Sullivan & Knutson, 2000; Ammerman, et al, 1994 Risk factors

19. Individual risk factors for SEXUAL ABUSE – People with DDs typically trained for compliance – Impaired verbal and social abilities less likely to speak out or speak effectively – Low level knowledge re: sexuality – Lack of sexual education and abuse prevention Less access to books, peer group, school education Tang, 1999; Watson, 1984; McCabe, 1993; Fenwick, 1994; Furey, 1994; Howland & Climents, 1995, Singer, 1996 Risk factors

20. Societal factors – Stigma and misconception People with ID as sexual deviants, as asexual childlike innocents – Social, emotional isolation of families – Dependence on others to monitor, protect, report Institutional fears, parental fears and denial Ammerman et al, 1994; Murphy, 1981; Antonak, 1989; Blatt, 1987, Reynolds, 1997, Waldman et al, 1999. Risk factors

21. Predictors of Abuse in ASDs Presenting problems predicting sexual abuse – Sexually abusive towards others: 10.6 Odds Ratio – Runaway: 5.4 OR – Suicide attempt; 4.4 OR – Not psych hospitalization, conduct/internalizing/somatic/academic problems, SIB Presenting problems predicting physical abuse – None significant at p=.05 Mandell, 2005, Child abuse & neglect

22. ASDs & Victimization Others sense their vulnerability – Rule-bound and naïve: easy to dupe, wanting to please – Isolated: perpetrators try to bully into keeping quiet Often set themselves up – Provocative: interrupt, have unusual behaviors, some flaunt to get attention, annoy others by harping on the rules, tattletale, or make blunt statements without appreciation for the impact (seen as rude, arrogant, or sarcastic). – Make people uneasy: stare, invade personal space, over-persist, have odd behaviors or body postures, ask strange questions, stalk

23. ASDs & Victimization Can’t get out of trouble – Poor social intuition: can’t read danger cues, social context cues – Rule oriented: cannot problem-solve when someone else isn’t following the rule book – Poor social skills: can’t extricate themselves from predicaments – Others don’t help: person might be seen as odd or crazy, and maybe deserving (if they were provocative), so others might be less inclined to help Don’t follow up – May not even recognize having been violated – May be afraid or not clear on how to follow up – May get no consensual validation or seem believable

24. Example individual risk factors for sexual abuse In a Hong Kong study (Tang & Lee, Child Abuse & Neglect, 1999) of 77 female teens with mild IDs: subjects were able to discriminate appropriate from inappropriate touching, but had limited knowledge of sexuality and sexual abuse, difficulty in describing incidents, and knowing how to protect themselves. Consistent with findings in western cultures. Sexual abuse knowledge was found to be the best predictor of self-protection skills

25. Example - societal factors for abuse disability affects CPS workers’ perceptions of abuse Children with disabilities were more likely than children without disabilities to be seen as having characteristics that contributed to their own abuse. When the abuse occurred in children with disabilities, interventions focused on the child; without disabilities, the interventions focused on the parents. With severe injuries (broken bones, concussions), CPS workers’ recommendations differed between the groups. Manders, J. E. & Stoneman, Z. 2009: Child abuse & neglect

26. Quote from Robert Joseph, PhD (lecture notes, New York, 2013) The Eternal Child Myth

27. Sequelae in this Population UK study of 10,000 showed signif higher rates of anxiety disorders, hyperkinesis, conduct disorders, and all diagnoses as a whole in age 5-15 yr olds with ID We’ve seen large #s of children and adults with ODD, anxiety disorders, dysregulation and self-stimulation. Higher rates of PTSD? Remember: this population has more than double the rates of abuse, multiple types of maltreatment, multiple incidents, by people they know and see repeatedly in their lives, coupled with low empowerment, low ability to extricate themselves… (Emerson, 2003. J intellectual disability research)

28. Sequelae in this Population We’ve focused on the nurture side of the equation… … is there a nature side?

29. Intense World Theory & implications A grand unifying theory for the wide variety of phenomena seen in ASDs (and some other DDs?) Drivers: hyperconnectivity and hyperplasticity in the frontal brain Effects: hyper-perceptual, hyper-learning, hyper-memory skills, hyper-fear with poor sensory gating and sensory integration issues, emotional dysregulation Even small events experienced as trauma Results: attempts to parse information and compartmentalize, self-regulate in unusual ways, insist on sameness, and phobic avoidance Markram and Markram 2007, Front neurosci

30. So What’s on the Evidence Based Menu? Supports for mom Family stress mitigation Social skills training Verbal skills and interpersonal training Training in sexuality & sex abuse prevention Help parents talk to their kids Child workers alert to: – Sexual acting out – Running away – Suicidality Opportunities for families to connect Opportunities for siloed agencies to collaborate

31. Prevention Assessing knowledge of patients The “What If” Situation Test (WIST; Wurtele, 1990) Personal Safety Questionnaire (PSQ; Wurtele, 1990) Model training programs Core: social skills & communication Basic factual education about the body, sexual functioning, pregnancy, STDs, homosexuality,… Normative and positive concepts about one’s own body Boundary issues and violations Communication skills around sexuality Safe techniques Tailor to age and types of disability, ethnic culture (Ludlow, 1991; McCabe, 1993, Sundram & Stavis, 1994)

32. Social Skills & Prevention Training for Young Adults with IDs & Autism “unfortunately, this population does not get information from family members, teachers, or magazines. Their friends are in the dark too… … they get information from pornography sites and the Jerry Springer show … …The training must be very concrete and explicit, with all the words and all the pictures…” Personal communication, 2013: Bobra Fyne, Sexual Education and Training, YAI National Institute for People with Disabilities

33. Core: social skills training Modality: Group based… reflection, modeling Techniques: Not didactic… action oriented, theatrical Uses props, pictures, and participatory improvisational vignettes with stop motion teaching Social Skills & Prevention Training for Young Adults with IDs & Autism YAI National Institute for People with Disabilities Personal communication, 2013: Bobra Fyne, Sexual Education and Training, YAI National Institute for People with Disabilities

34. SOCIAL ETIQUETTE - personal space, distinguishing stranger v. acquaintance v. staff/professional v. friend BODY PARTS – same gender, then other gender, functions, role in sexual activity The ABCs of Sex Social Skills & Sexuality Training The Basics YAI National Institute for People with Disabilities

35. Dozens of exercises… Pictures and role playing Healthy vs. Unhealthy relationships Photos of inappropriate touching Abuse vs. Not Abuse Practice looking in a mirror and saying NO Sexuality Training for Young Adults with IDs and autism YAI National Institute for People with Disabilities

36. 1.No, with an explanation 2.No, with an alternative 3.No, with a feeling 4.No and GO At least 2 people they can go to if threatened or hurt NO-GO-TELL paradigm “4 Ways to Say No” YAI National Institute for People with Disabilities

37. Given that >80% F, >30% M are sexually abused, trainers are aware of the possibility of retraumatization and equipped to respond Sexuality Training for Young Adults with IDs and autism YAI National Institute for People with Disabilities

38. Collaboration: “Project Shield” Brooklyn DA Office and YAI National Institute To facilitate more effective investigations and prosecutions of sex crimes involving individuals with ID/DD Focus on education of social service, medical, law enforcement personnel Examples: Vulnerabilities, reporting, determining consent, forensic interviewing, collection of evidence, victim support, follow-up care, alliance building… RESOURCE: www.brooklynda.org/project_shield/project_shield.htmwww.brooklynda.org/project_shield/project_shield.htm EMAIL: Sara Lynn Vehling, LCSW vehlings@brooklynda.org

39. Your role? - Prevention Familiarity with the type of disability – Motor planning issues: increased accidents – Spina bifida: fractures of desensitized limbs – Poor nutrition/ immobility: bone demineralization and fractures – Self-stimming: picking, headbanging Be direct with parents’, schools’ burdens of care and limits Family supportive services, family resources Asks schools what they offer in preventive training & discuss with parents and patients: social, sexual, abuse

40. Your role? – Assess & Report Be prepared to identify and report – Patients, parents less likely to report – Institutions disincentivized to report Assess for psychiatric morbidity/comorbidities Multidisciplinary assessment and treatment – Pediatrician, child protection services – Evidenced-based mental health services

41. Your role? – After the fact Safety! – address contact with the perpetrator – Is anyone else also at risk? Support services – Respite care, in-home services, parenting skills, other family supports. State/local DD offices have program lists. Advocacy and case review Hibbard et al, PEDIATRICS, 2007,119(5), 1018-1025

42. Thank you Robert Joseph, PhD Sexuality Consultant, NY, NY Bobra Fyne, LMSW and Marco Damiani, MA, YAI National Institute for People with Disabilities, NY, NY email bobra.fyne@yai.org

43. To access these slides and a bibliography with resources… www.dellabella.us visit