Agenda 2

Specific Context  Biopsychosocial Approach and their Impact on Brief Descriptions of Specific Disabilities Sexual Expression Background information on Sexuality and Specific Effects of Disabilities on Sexual Expression Shelley L. Watson, Ph.D. Suggestions for , Counselling, and Laurentian University, Sudbury, ON Treatment

Nov 23, 2010 1

3 Biopsychosocial Approach Developmental Disabilities 5 6

 21 Chromosomal Disorders DSM Diagnoses  Non-sex chromosomes   1 out of every 700-1000 live births  Down syndrome Disorders  Sex chromosomes  Characteristic facial appearance; epicanthal folds;  single crease across palm; ; short stature  Klinefelter Non-genetic Disorders  Stereotyped “Down syndrome personality”  FASD Genetic Disorders  Health problems include:  Recessive  congenital heart defects (50%)  Lesch-Nyhan syndrome  hearing loss (66-89%)  Unknown genetic etiology  Smith-Magenis syndrome  opthalmic conditions (- 60%)  Prader-Willi syndrome  William’s syndrome  (50-90%)

7 8 Fragile X syndrome

 Most common inherited cause of  First human sex chromosomal abnormality to be reported  Full appears in approximately 1 in 3600 males and 1 in 4000 to 6000 females  XXY karyotype  Mutation on the  1 in 500 male births  enlarged ears, long face with prominent chin  deficit disorders  Typically have learning difficulties  speech disturbances  Verbal skills disproportionately affected as compared  hand biting with nonverbal abilities (Dykens et al., 2000).  hand flapping  autistic behaviour  poor eye contact  aversion to touch and noise 9 10 Lesch-Nyhan syndrome Smith-Magenis syndrome

 X-linked recessive disorder  on  Near absence of an enzyme that leads to  1 in 25, 000 to 1 in 50, 000 live births excessive uric acid production  Results in neurological, renal, and muskuloskeletal  Characteristic face; flat mid-face; broad manifestations nasal bridge; fair hair and complexion;  Delayed motor development and spasticity large teeth; stork-like gait; self-hug  No individual with this syndrome has been able to  Self-injurious behaviours (peripheral walk or sit without support neuropathy; polyembolokoilamania);  Prevalence is approximately 1 in 200,000  Sleep disturbances; attention-seeking ;  Behavioural features perseveration; low impulse control  Extreme self-injury with loss of tissue due to biting

11 12 Prader-Willi syndrome Williams syndrome

 Deletion of part of the paternal copy of  Continuous deletion on area of Chromosome 15q  Characteristic facial appearance; underdeveloped  1 in 20, 000 live births sexual characteristics; hypopigmentation; hypotonia;  Characteristic face; hyperextensible joints small hands & feet; short stature  Extreme sociability  Compulsive behaviours; affinity for jigsaw puzzles  High rates of anxiety//  Rapid weight gain between 1 and 6 years old  95%- /hypersensitivity to sound  Insatiable appetite  Health problems include cardiac problems;  Most medical problems due to obesity Asperger’s syndrome 13 Fetal Alcohol Spectrum 14 Disorder (FASD)

DSM-IV- PDD classification; part of Autism New term that encompasses many of the Spectrum Disorders alcohol-related diagnostic categories and highlights  (1) Social isolation the continuum of symptomatology Cluster of symptoms that occur together and result  (2) pedantic speech from prenatal alcohol exposure  (3) unusual interests that occupy large part of their time  Fetal Alcohol Effects (FAE), Possible Fetal No significant delay in language development Alcohol Syndrome (PFAS), Alcohol Related Birth Defects (ARBD), and Alcohol Related Social problems do not manifest until ~ daycare age Neurodevelopmental Disorder (ARND) Anxiety towards change  1 to 6 in 1000 live births (Stade et al., 2006).

Characteristic Effects of Prenatal 15 Fetal Alcohol Spectrum 16 Exposure to Alcohol Disorder

1. Characteristic pattern of facial anomalies

2. Evidence of growth retardation: TTTiTiiimmmmeeeellli liiinnnneee sss aaannn ddd FFFAFAAASSSS////FFFFAAAAEEEE fffooo rrr aaannn 111888 ---y -yyyeeeeaaa rrr- r---oooollld lddd

 Low birth weight for gestational age Developmental Age Equivalent

 Weight loss over time not due to other causes 0 5 10 15 20  Disproportional low weight to height 20 Expressive Language 3. Evidence of brain or central nervous system 6 Comprehension abnormalities in: 8 Money, time concepts 6 Emotional Maturity

 Decreased cranial size at birth Skill 18 Physical Maturity  Structural brain abnormalities 16 Reading ability 7 Social Skills  Neurological hard or soft signs (impaired fine motor skills, 11 neurosensory hearing loss, poor tandem gait, etc.) Living Skills 18 Myths regarding sexuality (Griffiths, 2007)

People with developmental disabilities (DD):

 are eternal children and asexual  need to live in environments that restrict and inhibit their sexuality to protect themselves and others  should not be provided with sex education as it will only encourage inappropriate behaviour Sexuality and Disability  should be sterilized because they will give birth to children who are also disabled 17

Myths regarding sexuality 19 Myths regarding sexuality 20 (Griffiths, 2007) (Griffiths, 2007)

 are sexually different than other people and These myths serve a common purpose: to are more likely to develop diverse, unusual, push the sexuality of individuals who have a or deviant sexual behaviours outside of the “normal” range  are over-sexed, promiscuous, sexually indiscriminate, and dangerous, and you have As long as these myths exist, the sexuality of to watch your children around them individuals who have DD will continue to be  cannot benefit from sexual counselling or misunderstood and misrepresented treatment 21 22 Sexuality The Need for Sex Education

Sexuality is more than simply sexual behaviour  Interest that people with DD have expressed in learning more about sexuality Acquired physical and mental impairments may alter one’s sexual drives, but they do not  Individuals who have DD are sexual beings with gaps eliminate basic sexual drives or human needs for in knowledge and experience affection, intimacy, as well as a healthy and  Often sheltered from sexual knowledge and typical positive and positive self-concept experiences that would assist them in developing a healthy understanding of their sexuality  Negative attitudes toward sex

23 Risk for Sexual Abuse 24 The Need for Sex Education  Regardless of age, individuals with DD appear to be more vulnerable to abuse than individuals who Deinstitutionalization do not have a disability Increased incidence of sexual abuse against  Although the exact degree of risk varies from study to study, it appears to be at least 150 percent of that for individuals people with intellectual disability Increasing risk for sexually transmitted  Not directly related to the nature of the individual’s infections and HIV infection disability  Assumptions many people make about individuals who have developmental disabilities  “Sexual abuse is more than a sexual act - It is an expression of power” (Griffiths, 2007, p. 579) 25 26 Heightened Vulnerability Risk for STI & HIV Infection

Among adolescents, individuals who have Limited experience with relationships disabilities appear to be a group potentially at high risk for contracting AIDS Limited experience with assertiveness and choice making Thompson (1994)  Obedience and compliance  “Cottaging” Social isolation Questions exists about whether mediating Poor communication skills  Limited affective and sexual vocabulary variables, such as impulsivity, awareness of disease causality and control, and perception of self-efficacy affect the risk behaviours associated with transmitting STIs and HIV

27 28 Inappropriate Behaviour Counterfeit Deviance

Diagnosis? Hingsburger, Griffiths, and Quinsey (1991) coined this term to describe the sexual misbehaviour of Sensory integration difficulties individuals with disabilities as a product of  Self-stimulation experiential, environmental, or medical factors Sexual abuse  Modelling 11 hypotheses  Perpetual arousal Poor social skills, poor impulse control  Medical side effects Lack of outlet for appropriate sexual expression  Inappropriate courtship Down syndrome 30

Biological  Males, generally sterile (decreased production of sperm)  Fertility rate in females is low  Precocious puberty and menorrhagia (heavy periods)  Related to hypothyroidism  Early menopause  Depression and compulsive behaviour quite common

The impact of specific disabilities on Sexual Expression sexual expression  At an increased risk of sexual abuse due to social natures 29

Fragile X syndrome 31 Klinefelter syndrome 32 Behavioural Biological  Great need to please; to be loved  Hypogonadism (sex glands produce little or no hormones)  Impulsivity  Elevated gonadotropic hormones  Sexual frustration; may precipitate aggression  Gynecomastia (breast enlargement in males)  Delayed development of secondary sexual characteristics Biological  Lack of sperm  Most males develop large testicles (macro-orchidism)  Sexual dysfunction  Epilepsy and Major depression quite common  Decreased libido

Sexual Expression Sexual Expression  Aggression, anxiety, and social avoidance may impact their  Speak inappropriately sexual identity and their expression  Esteem issues Lesch-Nyhan syndrome 33 Smith-Magenis syndrome 34

Behavioural Behavioural  Extreme self-injury  Polyembolokolamania (orifice stuffing) Biological  Females: vaginal stuffing- Low impulse control  aggressive hugging; bodily self-hugging  Mobility deficits  Smelling or sniffing behaviours  Delayed puberty Biological  Overproduction of uric acid  Puberty can be difficult for females  Vulnerability to urinary tract infections  Urinary tract abnormalities Sexual Expression Sexual Expression  Self-injurious behaviour is problematic (masturbation)  Suspicion of sexual abuse, but actually form of self-injury (stuffing)

Prader-Willi syndrome 35 Williams syndrome 36

Behavioural Biological  Friendly demeanor  Under-developed physical sexual characteristics  no stranger anxiety; impulsivity  Hypogonadism;  Cryptorchidism Biological  Low energy; sex drive  Menstrual problems  Delayed puberty  Menarche occurring as late as the 30s  Extreme PMS; outbursts of anger during menses  Precocious development of pubic and underarm hair  Precocious puberty  Obsessive-Compulsive behaviour  Seizures quite common  Obsessive-Compulsive behaviour Sexual Expression Sexual Expression  Vulnerable to exploitation  Impulse control  Inappropriate sexual behaviour due to increased sociability Asperger’s syndrome 37

Behavioural  Self-stimulation Biological  Hypersensitivity; hypo sensitivity Sexual Expression  Inappropriate sexual behaviour due to social skills deficits  boundaries Sex education and counselling for  frustrations individuals with disabilities

38

39 40 What should we teach? What should we teach?

When sexuality information is provided, it is Basic Body Part Identification frequently to address problems and is not formulated  Training regarding Pap smears and pelvic examinations to integrate a person’s sexuality into other aspects of the person’s life Relationship Training Sexuality training is best used proactively or Information regarding STIs and birth control preventatively Empowerment/Self-Esteem Training  The objective of socio-sexual education should be to teach  Emphasis on sexual choice and sexual responsibility responsibility for one’s sexual feelings and desires, not to eliminate sexual interest and response Individualized Training 41 42 Anatomy and Sexual Health Sexual Pleasure

 Anatomy and physiology as well as maturation and body changes  Most women who have spoken about sexual experiences have said that they do not experience  Discussion of male and female anatomy, including reproduction, the sexual life cycle, and human sexual much, if any, sexual pleasure response  It must be emphasized that physical pleasure is not the  Remain cognizant of the ways a specific disability may only kind of pleasure to be gained from engaging in sex affect reproductive ability and physical appearance  Be certain that sex education includes discussions of the emotional and social aspects of sexuality, not just instruction  McCarthy (1993; 1996) on the anatomy and mechanics of sexuality  Teaching about bodies in order to increase sexual pleasure as well as to decrease vulnerabilities

43 44 Relationship Training Empowerment/Esteem Training

 What constitutes appropriate and inappropriate sexual  Positive sex messages relationships  Self-esteem  Responsibilities that come with sexual expression  Positive body image  Reproduction and sexual behaviour are not synonymous  Important social and emotional contexts of sexuality are often carefully  Assertiveness withheld from sex education  Choice  For most individuals who have DD, sex is experienced  Discrimination of appropriate and inappropriate primarily physically , rather than as a psychological or requests emotional connection with the person concerned 45 46 Birth Control/ STIs How Should we Teach Sex Ed?

 Individuals should be educated about how it can be  Life-long process prevented and also what should be done if one  Accurate information when it is age-appropriate and suspects that he or she may have contracted an STI contextually relevant for them to know it  In discussing reproductive options and birth control,  Good sexuality education should begin at birth, one must assess whether the disability influences couched in a framework of positive healthy attitudes fertility and fertility options and responses from nurturing adults  Reproductive choices that are suitable for women who have a disability must be discussed and made available

47 48 How Should we Teach Sex Ed? Individualized Training

 Formal sex education classes are largely not  The real challenge is to assist people to gain a sense effective of sexual identity whether that be as part of a  Sexuality needs to be normalized among people heterosexual or homosexual relationship, or to be a with disabilities sexual being without a partner  Sex education programs have a greater likelihood  Must develop a sense of the actual sexual needs and of success if parents and care staff are also experiences of people with intellectual disabilities involved, both in terms of exposure to the program  Only then can we tailor programs to address needs, and working through the program with the people rather than imposing the values of people without with intellectual disability disabilities on people with disabilities 49 50 Individualized Training Individualized Training

Programs have tended to assume a  Specific Developmental Disabilities heterosexual perspective  Special educators have not traditionally included 10% of the North American population has a information about the causes of individuals’ disabilities homosexual orientation, including those who into their everyday work have a DD  Cause of an individual’s developmental disability can impact on his or her learning style, behaviour, and Men with disabilities living both in institutions educational needs and community settings are significantly more likely to have had sex with men than  Dykens, Hodapp, & Finucane (2000) with women  “best educational setting”

51 52 Individualized Training Down syndrome

Down Syndrome Difficulties in developing certain language skills, Fragile X Syndrome especially in expressive language and grammar Prader Willi Syndrome Perform much better on visual-spatial tasks than Williams Syndrome on verbal or auditory tasks Fetal Alcohol Spectrum Disorder 53 54 Fragile X syndrome Prader-Willi syndrome

Strengths include verbal skills, long-term memory Visual perception strengths for learned information, and expressive  affinity for jigsaw puzzles vocabularies Do well with integrated tasks that have a visual or hands-on component (pictures, diagrams) or use a familiar context

55 56 Williams syndrome FASD

Auditory and verbal strengths Strengths  Musical strengths  Expressive language  Reading ability Distractibility Limitations Anxiety  Comprehension  Emotional maturity  Social skills  Naivety 57 58 Questions? Sexuality is an integral part of the personality of everyone: man, woman, and child. It is a basic need and an aspect of being human that cannot be separated from other aspects of human life Thank you

[email protected] (705) 675-1151, ext. 4223

Resources 59  Griffiths, D. & King, R. (2004). Demystifying syndromes: Clinical and educational implications of common syndromes associated with persons with intellectual disabilities . Kingston, NY: NADD Press.  Griffiths, D.M., Richards, D., Fedoroff, J.P., & Watson, S.L. (2002 ) Sexuality: Ethical dilemmas . Kingston, NY: NADD Press  Henault, I. (2006). Asperger’s syndrome and sexuality . London: Jessica Kingsley.  Sexuality and Disability (academic journal)  SIECCAN (Sex Information and Education Council of Canada www.sieccan.org