restaurants have ice in the urinals to keep them fresh so it is important to let kids know never to eat ice they find in the bathroom. Sex and sexuality is an extensively under- researched area of adaptive functioning in adolescents & adults with ASD This presentation contains TV language and imagery of a sexual nature and may be MA considered inappropriate for younger listeners and viewers. Lisa Mitchell’s Top 10 Reasons Why We Should Teach Human Sexuality Education To Individuals With Autism Spectrum Disorders Number 10…
Low Reading Ability Hinders Learning From
Written Materials Number 9…
Many Individuals With ASD Do Not Have
Even Basic Knowledge About Sexuality Number 8… Many Individuals With ASD Do Not Know When & Whom To Ask Questions Number 7…
To Prevent The Spread Of HIV/AIDS & STD‟s Within The DD Population Number 6…
The Internet and other
readily accessible media Number 5…
They Have The Same
Hormones &Urges & Need To Make The Same Choices As Their Peers Number 4…
Many Have Low Self-Esteem & May Do
Anything To Be Accepted By Peers Number 3...
Sexual Abuse Self-Protection Teach that refusing to be touched is a right Teach that secrets about being touched are not OK Teach self-protection skills ◦ Who can/can‟t touch the individual and where on his/her body ◦ How and when to say “No” ◦ How to ask for assistance ◦ How to recall remote events and convey where an individual touched him/her (American Academy of Pediatrics, 1996; Nehring, 2005; Roth & Morse, 1994; Volkmar & Wiesner, 2004) Number 2... Limited Opportunities For Socialization & Normalizing Socio-Sexual Experiences, Compounded By Social Skill Deficits Number 1… Because They Are People & Like All People Individuals with Autism Have The Right To Learn All They Can To Enable Them To Become Sexually Healthy Persons Why ABA to teach this stuff? Despite much discussion about decision making skills in the self-determination literature (e.g., Clark, et al., 2004), there continues to be “lack of evidence [supporting the] effectiveness of sex education and training for persons with developmental disabilities” (Duval, 2002, p. 453) which Behavior Analysis is able to provide. Sexand sexuality, as serious topics for discussion, are ones that many of us would rather avoid than address. This may be even more true when the issue is sexuality and learners with ASD. Working Definitions… • 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. Sexuality is not synonymous with sexual intercourse [and it] influences thoughts feelings, actions, and interactions and thereby our mental and physical health” (WHO, 1975)
• Sex can simply mean gender, whether you‟re male or female.
Sex can also mean the physical act of sexual intercourse.
• Sexuality education is a life-long process that encompasses many
things: the biological, socio-cultural, psychological and spiritual dimensions of sexuality. Historical Considerations (Sobsey, 1994) Eugenics Movement ◦ Starting in the late 1800‟s laws were passed banning marriage or sexual intercourse involving women with a developmental disability or epilepsy (Sobsey, 1994).
◦ Between 1907 & 1957 (and later in some cases),
some 60,000 individuals with a developmental disability were sterilized without their consent or, at times, knowledge. Historical Considerations (Sobsey, 1994) ◦ Both programs were designed to 1) protect learners with a developmental disability from sexual abuse and 2) eliminate developmental disabilities by restricting reproduction.
◦ Until the mid-1960s such actions remained
relatively commonplace with displays of sexuality by learners with developmental disabilities punished as inappropriate or deviant. Myths about Sexuality In the community at large, there continue to exist a number of myths regarding sexuality and learners with ASD including: ◦ Persons with ASD have little or no interest in sexuality. ◦ Persons with ASD are hypersexual. ◦ Persons with ASD are solely heterosexual But the Truth Is… Persons with ASD are sexual beings. However, individual interest in sex or in developing an intimate sexual relationship with another person varies widely across individuals at all ability levels. As such, there is a significant need for individualized, effective instruction for persons with ASD across the ability spectrum. But… • Individuals with ASD may have sexual feelings that are out-of-sync with their level of social development and awareness • As kids grow older, their social and sexual skill sets are likely to become more disparate with their chronological age and appearance • Other people, however, will base expectations on their chronological age, NOT their developmental age (American Academy of Pediatrics, 1996; Koller, 2000;Volkmar & Wiesner, 2004) What we don‟t know…
In two (somewhat) recent studies, (McCabe &
Cummins, 1996; Szollo & McCabe, 1995) researchers concluded that individuals who have an intellectual disability have lower levels of sexual knowledge and experience in all areas except menstruation and body part identification when compared to a typical student population. Watson, Griffiths, Richards, & Dysktra, (2002). Sex Education, In Griffiths, Richards, Federoff, & Watson (Eds.). Ethical Dilemmas: Sexuality and Developmental Disability. (pp 175-225). Kingston, NY: NADD Press can sometimes hurt us.
• Stokes, Newton, & Kaur (2007) examined the nature
of social and romantic functioning in adolescents and adults with ASD. What they found was that individuals with ASD were more likely than their NT peers to engage in inappropriate courting behaviors; to focus their attention on celebrities, strangers, colleagues, and exes; and to pursue their target for longer lengths of time (i.e. stalking). » Stokes, M., Newton, N., & Kaur, A. (2007). Stalking, and social and romantic functioning among adolescents and adults with autism spectrum disorder. Journal of Autism and Developmental Disorders, 37, 1969-1986. And for the Learner with ASD… sexuality education is complicated by language and communication problems and social deficits. Unfortunately, while sexual feelings and interest may be high, a primary information source available to neurotypical teens, (i.e., other teens), is generally not available. (Volkmar & Wiesner, 2003) For example… There are different types of sexual language including: ◦ Formal/polite – Vagina ◦ Technical – Labia, Cervix, Clitoris, Vulva ◦ Cute – Va-jay-jay, Muffin, Little man in the boat, Punani, Lady parts, etc. ◦ Slang – Snatch, Beaver,Twat, etc. Sexuality education should be proactive Griffiths, (1999) notes that most learners with a developmental disability receive sexuality education only after having engaged in sexual behavior that is considered inappropriate, offensive or potentially dangerous. This may be considered somewhat akin to closing the barn door after the horse has run. Teaching materials Commercial products include: ◦ Anatomically-correct dolls ◦ Anatomical models of body parts ◦ Written materials and pictures ◦ Slide shows and videos Shop carefully-- most products were not created for people with ASD, and they are expensive Teaching materials Creating your own is easy and less costly Resources include: ◦ Medical and nursing textbooks ◦ Patient education materials ◦ Sexuality education books at the library ◦ Google Image search ◦ Planned Parenthood ◦ Homemade digital photos & videos (NOT of nudity or private activities) Guidelines for making materials Individuals with autism may attend to irrelevant details, so avoid visual clutter and make the relevant stimuli obvious Skills that are not generalized are not useful skills, so provide multiple examples of the same concept to aid generalization For example… This is Claire Which one is Claire? This is Allison Which one is Allison? This is Nancy Which one is Nancy? Which is Nancy? A final guideline Individuals with autism can be concrete thinkers who interpret things literally, so… ◦ Be frank during instruction ◦ Provide clear visual and verbal examples ◦ Avoid euphemisms For example… (Rated R) Some responses of adults with autism during an assessment* of sexual knowledge
Q: Tell me about this
picture.
A: “[T]he people were sitting on the couch „being http://www.camboday.com/UnderstandingSex/healthsex/img/sex_sofa.jpg friends‟.” (Konstantareas & Lunsky, 1997, p. 411) Some responses of adults with autism during an assessment* of sexual knowledge
Q: What does this
picture show?
A: “[t]wo people lying on a towel.” http://www.ural.ru/gallery/news/people/sex/bed.jpg
(Konstantareas & Lunsky, 1997, p. 410)
Some responses of adults with autism during an assessment* of sexual knowledge
Q: What is this man
doing?
A: “[T]he hand is somewhere; he chopped it off.” http://www.reuniting.info/images/0bedSM.jpg (Konstantareas & Lunsky, 1997, p. 411) Goals of a comprehensive sexuality education Provideaccurate information Develop personal values Develop the necessary social competence Goals of Comprehensive Sexuality Education: INFORMATION
Provide information that is accurate, timely, and
presented in such a way as to be understood. Potential areas of information include: ◦ Human growth, development and puberty ◦ Masturbation ◦ Sexual abuse, personal safety and STDs ◦ Pregnancy, childbirth and parenthood ◦ Sexual orientation Central Instructional Concepts Public versus private behavior Good touch versus bad touch TM Proper names of body parts “Improper” names of body parts Personal boundaries/personal spaces Masturbation (“Private Touching”) Avoidance of danger/Abuse prevention Social skills and relationship building Dating skills Personal responsibility and values What to teach and when… some general guidelines.*
Preschool through Elementary
◦ Boys v. girls ◦ Public v. private ◦ Basic facts inc. body parts ◦ Introduction to puberty (your changing body) ◦ Introduction to menstrual care ◦ Appropriate v. inappropriate touching
Source: Schwier, K.M., & Hingsburger, D. (2000)
• Middle School to High School and Beyond.. – Puberty & Menstruation (if not yet addressed) – Ejaculation and wet dreams (if not yet addressed) – How to say “no” (if not yet addressed) – Masturbation (if not yet addressed) – Public restroom use – Attraction and sexual feelings – Relationships and dating – Personal responsibility and family values – Love v. sex – Sexual preference – Laws regarding sexuality – Pregnancy, safe sex, birth control – Etc. The same techniques we use to teach other behaviors… Can be used for sexuality education, too. Some examples: ◦ Picture schedules ◦ Shaping ◦ Cognitive rehearsal ◦ Personalized stories ◦ Video-modeling ◦ Discrete Trial Instruction Public/Private Discriminations Be clear about social and family rules about privacy and modesty ◦ Restrict nudity in public parts of the house ◦ Dress and undress in bedroom or bathroom ◦ Close doors and shade windows for private activities ◦ Teach use of robe ◦ Caregivers should model knocking on closed doors before going in
(American Academy of Pediatrics, 1996; NICHCY, 1992; SIECUS, 2001)
Public/Private Discriminations Some concepts to teach: ◦ Naked vs. wearing clothes ◦ Places where it is OK to be naked (and where it is not) ◦ Which parts of the body are private ◦ What kinds of activities are private ◦ Where it is OK to do private activities
(American Academy of Pediatrics, 1996; Nehring, 2005; Volkmar & Wiesner, 2004) Goals of Comprehensive Sexuality Education:VALUES To develop personal values reflective of family, religious and cultural values in such areas as: ◦ Personal responsibility ◦ Self esteem ◦ Right v. Wrong ◦ Reality v. Fantasy ◦ Interpersonal respect ◦ Personal limits Key Concepts: Values Homes, schools & day programs are laboratories where our people learn values by observation, limitation, reward and punishment. Be consistent in approving or disapproving of certain behavior. Approval or positive reinforcement is more effective than punishment in teaching values. Encourage curiosity, independent thinking, problem solving and self-expression. Slide Courtesy of Lisa Mitchell Goals of Comprehensive Sexuality Education: SOCIAL Promote the development of adequate and effective social repertoires inclusive of: ◦ Decision making skills ◦ Personal advocacy ◦ Peer refusal skills (i.e., a functional “no”) ◦ Avoidance of dangerous situations ◦ Dating Source: NICHCY News Digest,Vol. 1(3), 1992. Available on-line at nichcy.org What do we mean by the term “social skills”? Social skills might best be understood as access and navigation skills… they are how we acquire desirables and avoid negatives by successfully navigating (and manipulating) the world around us. They are complex, multilayered skills that are bound by both content and context. Social Threads of Discussion From the Douglass Group “I just want someone to show me the rules.” Independence, and respect for one‟s independence are important. “If you NTs have all the skills, why don‟t you adapt for awhile?” It‟s not so much knowing the skill but using the skill. Reports of social isolation are prevalent The Increasing Demands of the Social World Your social demands are often lowest within your home. Why? Because you set the rules of acceptable behavior.
Your social demands at work are higher.
However, work is a somewhat scripted social environment and one with a secondary measure of competence (i.e., production). The Increasing Demands of the Social World Next comes the community at large. Why? Because in the community you have less control over events and actions that impact you.
Lastly comes the world beyond your
community. Whether a different social circle or different country, chances are you social skill repertoire may be less than adequate. The Urinal Game: Which to Choose? Masturbation Is normal and should not be condemned Exploration of genitals for self-pleasure begins in infancy Most people with autism learn to do it on their own, although some may have difficulty reaching orgasm Ineffective masturbation may contribute to ritualistic behaviors in some people with autism Masturbation may be the only realistic outlet for sexual release for some people with autism
(Ailey et al., 2003; Koller, 2000; Nehring, 2005;Volkmar & Wiesner, 2004) Preventing problems Designate where it is OK to masturbate ◦ Individual‟s bedroom ◦ Avoid teaching use of bathroom Teach rules for appropriate time/place Teach that sometimes it is not an option Provide private time Schedule private time and help individual understand the schedule
(Baxley & Zendell, 2005; Koller, 2000; NICHCY, 1992; Volkmar & Wiesner, 2004) Handling problems Interrupt the behavior but don‟t punish or overreact Remind the student of the rules for appropriate masturbation by referring to the visual cues he/she uses Redirect the student to: ◦ An activity that requires use of hands ◦ A physical activity ◦ An activity that requires intense focus ◦ To his/her bedroom, if available Reinforce student when he/she is engaging in appropriate behavior (Baxley & Zendell, 2005; Koller, 2000; NICHCY, 1992; Volkmar & Wiesner, 2004) Challenges to Sexuality Education for Learners with ASD.
The social dimension of sexual behavior
Differentiation between public and private behavior and reality v. fantasy Ensuring the maintenance of learned skills, particularly those associated with sexual safety Balancing individual safety with personal respect and individual rights Issues related to law enforcement Recommendations for Future Research and Practice
Assessment methods to identify functionally relevant skills (i.e., true
adaptive behavior) for development in the community
Effective behavior analytic instruction in community-referenced safety
skills. Issues related to long term maintenance
Retrospective studies of “successful v. unsuccessful” adults on the
spectrum to help indentify effective strategies and interventions
Effective methods of community training to promote great levels of
social inclusion for learners with ASD across multiple environments Recommendations for Future Research and Practice
Effective models of transition intervention resulting in more
positive outcomes.
Cost-benefit analyses of current models v. less “facility-
based” models of adult services and support
Issues related to staff recruitment and retention
Family support issues and intervention for parents of adults
Recommendations for Future Research
Implications of fluency-based interventions on the development of adaptive
responding with older learners
Competency-based models of staff training in the provision of community-
based instruction
Implications of instruction in social survival skills v. more typical social
competence skills.
Effective instruction in the areas of sexuality and sexual safety
Models of therapeutic intervention in the criminal justice system
References Ailey, S., Marks, B., Crisp, C., Hahn, J. (2003). Promoting sexuality across the life span for individuals with intellectual and developmental disabilities. Nursing Clinics of North America, 38, 229-252.
American Academy of Pediatrics Committee on Children with Disabilities (1996). Sexuality education of children and adolescents with developmental disabilities. Pediatrics, 97(2), 275-278.
Ames, H. & Samowitz, P. (1995). Inclusionary standards for determining sexual consent for individuals with developmental disabilities. Mental Retardation, 4, 264-268.
Baxley, D. & Zendell, A. (2005). Sexuality Education for Children and Adolescents with Developmental Disabilities: An Instructional Manual for Educators of Individuals with Developmental Disabilities, Sexuality Across the Lifespan. Tallahassee, FL: Florida Developmental Disabilities Council, Inc.
Green, C. & Reid, D., (1996). Defining, validating, and increasing indices of happiness among people with profound, multiple disabilities. Journal of Applied Behavior Analysis, 29, 67-78.
Griffiths, D. (1999) Sexuality and developmental disabilities: Myths, conceptions and facts. In I. Brown and M. Percy, (Eds.). Developmental Disabilities in Ontario (pp. 443-451). Toronto: Front Porch Publishing.
Griffiths, D.M., Richards, D. , Fedoroff, P., & Watson, S.L. (Eds.) 2002. Ethical dilemmas: Sexuality and developmental disabilities. NADD Press: Kingston, NY
Koller, R. (2000). Sexuality and adolescents with autism. Sexuality and Disability, 18(2), 125-135.
Konstantareas, M. & Lunsky, Y. (1997). Sociosexual knowledge, experience, attitudes, and interests of individuals with autistic disorder and developmental delay. Journal of Autism and Developmental Disorders, 27(4), 397- 413. References National Information Center for Children and Youth with Disabilities (1992). Sexuality education for children and youth with disabilities, 1(3), 1-28.
Nehring, W. (2005). Core Curriculum for Specializing in Intellectual and Developmental
Disability: A Resource for Nurses and Other Health Care Professionals. Sudbury, Massachusettes: Jones & Bartlett Publishers.
Roth, S. & Morse, J. (1994). A Life-Span Approach to Nursing Care for Individuals with Developmental Disabilities. Baltimore, MD: Paul H. Brookes Publishing Co.
Schwier, K.M., & Hingsberger, D. (2000). Sexuality: Your sons and daughters with intellectual disabilities. Baltimore: Paul H. Brookes Publishing
Sobsey, D. (1994) Violence and abuse in the lives of persons with disabilities: The end of silent acceptance? Baltimore: Paul H. Brookes Publishing.
Sexuality Information & Education Council of the United States (2001). SIECUS report: Sexuality education for people with disabilities, 29(3), 1-35.
Volkmar, F.R. & Wiesner, L.A. (2003). Healthcare for children on the autism spectrum: A guide to medical, nutritional and behavioral issues. Bethesda, MD: Woodbine House.
Volkmar, F. & Wiesner, L. (2004). Healthcare For Children on the Autism Spectrum: A Guide to Medical, Nutritional, and Behavioral Issues. Bethesda, MD: Woodbine House.
Dyadic Traumatic Reenactment - An Integration of Psychoanalytic Approaches To Working With Negative Interaction Cycles in Couple Therapy With Childhood Sexual Abuse Survivor
Dyadic Traumatic Reenactment - An Integration of Psychoanalytic Approaches To Working With Negative Interaction Cycles in Couple Therapy With Childhood Sexual Abuse Survivor
