Agenda 2
Specific Disabilities Context Biopsychosocial Approach and their Impact on Brief Descriptions of Specific Disabilities Sexual Expression Background information on Sexuality and Disability Specific Effects of Disabilities on Sexual Expression Shelley L. Watson, Ph.D. Suggestions for Sex Education, Counselling, and Laurentian University, Sudbury, ON Treatment
Nov 23, 2010 1
3 Biopsychosocial Approach Developmental Disabilities 5 Down syndrome 6
Trisomy 21 Chromosomal Disorders DSM Diagnoses Non-sex chromosomes Autism Spectrum 1 out of every 700-1000 live births Down syndrome Disorders Sex chromosomes Characteristic facial appearance; epicanthal folds; Fragile x syndrome single crease across palm; hypotonia; 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 (strabismus- 60%) Prader-Willi syndrome William’s syndrome hypothyroidism (50-90%)
7 8 Fragile X syndrome Klinefelter syndrome
Most common inherited cause of First human sex chromosomal abnormality intellectual disability to be reported Full mutation appears in approximately 1 in 3600 males and 1 in 4000 to 6000 females XXY karyotype Mutation on the X chromosome 1 in 500 male births enlarged ears, long face with prominent chin attention 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 Deletion on Chromosome 17 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 chromosome 7 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/fears/phobias Rapid weight gain between 1 and 6 years old 95%- Hyperacusis/hypersensitivity to sound Insatiable appetite Health problems include cardiac problems; Most medical problems due to obesity hypertension 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 developmental disability 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