DEVELOPING A BESTPRACTICES APPROACH TO TEACHING SEXUAL SAFETY

OBJECTIVES Define sexuality. Explore common myths. Look at challenges in conversation. Become familiar with key research. Explore assessment methods. Identify issues in sex education. Explore instructional strategies. Discuss social and life skills and the role of the family. 2

OBJECTIVE 1: DEFINE SEXUALITY 3

OBJECTIVE 1 WHAT IS SEXUALITY? Important across the lifespan Unique to each of us Experienced and expressed in all we are, feel, think, and do A basic human right A social phenomenon v v v This makes this area very challenging for learners with ASD who may have • • Difficulties with communication Impaired awareness of social cues Limited perspective (conceptualization) Difficulties with observational, unstructured learning Preoccupations/obsessions Difficulties understanding cause-effect relationships Difficulties with sensory stimulation 4

OBJECTIVE 2: EXPLORE COMMON MYTHS 5

OBJECTIVE 2 COMMON MYTHS Individuals with ASD are asexual (have no interest in sex. Individuals with ASD are too interested in sex (in inappropriate and uncontrollable ways). Individuals with ASD need to be sheltered and protected from sexual matters. Individuals with ASD are incapable of learning about sexuality or participating in sexual relationships. Individuals with ASD do not have sexual rights. 6

OBJECTIVE 2 IN FACT Individuals with ASD are sexual beings like all persons Can learn socially appropriate ways to express sexuality Can learn self-determination and selfprotective skills if given the education and opportunity Are capable of developing relationships with others at many levels of intimacy Do have sexual rights! 7

OBJECTIVE 3: LOOK AT CHALLENGES IN CONVERSATION 8

WHY IS THE CONVERSATION SO DIFFICULT? OBJECTIVE 3 Individuals with ASD create unique challenges for parents and social institutions with regard to sexuality and sex education. The expression of sexual behavior is influenced by various factors, such as cognitive function, language, and support systems. Due to the range of variability on the spectrum, one size does not fit all when discussing sexuality and ASD. Sexuality is a result of the interplay of biological, psychological, socio-economic, cultural, ethical, and religious factors 9 (potential conflict with others).

WHY IS THE CONVERSATION SO DIFFICULT? (CONTINUED) OBJECTIVE 3 Candid conversations about sexuality are difficult under the best of circumstances for most people and can cause conflict due to different perspectives. Candid conversation is typically avoided or expressed with anxiety (e. g. , adolescent humor overcompensation). Discussions about sexual behavior can trigger strong emotional reactions and create defensive barriers. 10

OBJECTIVE 4: BECOME FAMILIAR WITH KEY RESEARCH 11

KEY RESEARCH OBJECTIVE 4 The Antwerp study (Dutch report) Study – (1992) (n=81) Study – (2010) (n=22, HFA) Ruble, LA & Dalrymple, NJ (1993) Social/Sexual Awareness of Persons with Autism: A Parent Perspective (n=100) Stokes, MA & Kaur, A (2005) High-functioning autism and sexuality: A parental perspective HFA-neurotypical comparisons (n=50 NT) (n=23 HFA) Anecdotal case studies Parent/caregiver survey 12

OBJECTIVE 4 KEY RESEARCH (CONTINUED) ABUSE AND AUTISM Nationwide study of 156 children with autism living in the community over the years 1997 -2000 found that: 14. 1% or about one in seven had been physically abused 12. 2% or about one in six had been sexually abused 4. 4% had been both physically and sexually abused Sexually-abused respondents were more likely than others to act out sexually and/or to sexually abuse others Mandell et al. , 2005 13

KEY RESEARCH (CONTINUED) OBJECTIVE 4 As influenced by the foregoing studies: Sexual Behavior in Adolescents and Young Adults with Autism (Lang et al. , 2013) Difficulties with communication Impaired awareness of social cues Limited perspective ( conceptualization) Difficulties with observational, unstructured learning Preoccupations/obsessions Difficulties understanding cause-effect relationships Difficulties with sensory stimulation 14 (CONTINUED NEXT SLIDE)

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SEXUAL BEHAVIOR IN ADOLESCENTS AND YOUNG ADULTS WITH AUTISM OBJECTIVE 4 PURPOSE National study (2013; presented at International Meeting for Autism Research [IMFAR]) v To increase normative sample size v Identify variables such as religion and culture v Parent perceptions and attitudes toward sexuality METHODS-SURVEY This measure identifies parents’ attitudes and perceptions of their child, adolescent, and/or young adult’s behavior across five domains: Social behavior (7 items) Privacy awareness (17 items) Sex education (17 items) Sexual behavior (11 items) Parental concerns (4 items) (CONTINUED NEXT SLIDE) 16

SEXUAL BEHAVIOR IN ADOLESCENTS AND YOUNG ADULTS WITH AUTISM OBJECTIVE 4 (Continued) CONCLUSIONS Provides: Largest sample size to date regarding sexual behavior in ASD (N=227); more diversity in terms of region, verbal level, and autism diagnosis (i. e. PDD-NOS, HFA, Moderate, Severe). Inappropriate sexual behavior: More likely to be seen in more severe diagnosis of ASD, as well as those who are nonverbal. Decreases with age, suggesting that primary interventions are beneficial. Recommendations will be discussed later in talk. 17

OBJECTIVE 5: EXPLORE ASSESSMENT METHODS 18

OBJECTIVE 5 WHERE TO BEGIN Determine your own level of comfort. Determine the individual’s level of developmental functioning. Obtain appropriate social and developmental age materials. If the individual is matured physically but delayed emotionally, then be prepared to discuss this with teachers and others (prevention). 19

OBJECTIVE 5 DETERMINE THE INDIVIDUAL’S LEVEL OF FUNCTIONING What are their language and communication skills (e. g. , as derived from speech therapy)? What are their abstract reasoning skills? Are they hyper- or hyposensitive to visual, auditory, tactile, smell, or taste? Are there any additional challenges that can impact learning? Where is their social-emotional age as compared with chronological age and intellect? Use assessments and/or adaptive behavior tools 20

OBJECTIVE 5 DETERMINE THE INDIVIDUAL’S LEVEL OF FUNCTIONING Use the Vineland Adaptive Behavior Scale or other adaptive behavior tools. Use behavioral assessments for social skills, abilities, and behavioral issues. Use speech and language assessments for receptive and expressive language. COLLECT DATA! 21

OBJECTIVE 6: IDENTIFY ISSUES IN SEX EDUCATION 22

OBJECTIVE 6 SEXUALITY EDUCATION IS… “The lifelong process of acquiring information and forming attitudes, beliefs, and values about identity, relationships, and intimacy. It includes the biological, socio-cultural, psychological, and spiritual dimensions of sexuality. It addresses sexual development, reproductive health, interpersonal relationships, affection, intimacy, body image, and gender roles” (SIECUS, n. d. , p. 13). 23

SPECIAL CONSIDERATIONS WHEN EDUCATING STUDENTS WITH ASD OBJECTIVE 6 We know children with autism are often concrete thinkers and have difficulty generalizing. Students with autism may attend to details that are irrelevant. Make the answer obvious: avoid visual clutter and provide materials that make it hard to attend to irrelevant stimuli. Otherwise, students may attend to nonessential details and “miss the point. ” Teaching materials and methods must take these characteristics into consideration. 24

OBJECTIVE 6 The goal of sexuality education should be to protect the individual from sexual exploitation, teach healthy sex habits, and increase self-esteem through systematic, individualized approaches. As a general rule Be Clear Be Specific Be Concrete Education needs to be consistent and with commonsense, on-going, constantly reinforcing appropriate behaviors. 25

OBJECTIVE 6 KEY OBJECTIVES OF SEX EDUCATION 1. 2. 3. 4. 5. 6. 7. Provide information. Foster self-esteem. Develop attitudes and clarify values. Teach interpersonal skills needed to achieve mutually satisfying relationships. Develop responsible behavior. Develop assertiveness and self-protective skills. Teach skills for preventing pregnancy and sexually transmitted infections. 26

OBJECTIVE 6 INSTRUCTION SHOULD INCLUDE… Body parts – names and use Hygiene – how and why Sexual awareness – what sex is and what’s okay Reproduction Birth control Sexual health Male/female social/sexual behavior Dating Marriage Abuse awareness Boundary issues – ours and others’ Who, when, where, and how of boundaries, sex, and sexuality Self-esteem Assertiveness skills training Koller, R. (2000) Sexuality and Adolescents with Autism, Sexuality and Disability, Vol. 18. No. 2 27

OBJECTIVE 7: EXPLORE INSTRUCTIONAL STRATEGIES 28

OBJECTIVE 7 BEFORE YOU BEGIN… Decide what is most relevant and meaningful for the individual and omit what is not. Consider how long a skill may take to acquire and prioritize accordingly. Consider the age of the individual and his/her developmental level. Consider the natural sequence of sexual development. 29

INSTRUCTIONAL STRATEGIES OBJECTIVE 7 Talk about sexuality in a matter-of-fact way This might mean practicing to get rid of your jitters and giggles Be positive We don’t want to present sexuality as something bad, wrong, or dirty Give factual information Remember to be matter-of-fact Make sure you have accurate information Be concrete Avoid euphemisms and metaphors (e. g. , “birds and bees”) make it “real” to the student. Gear materials and instruction to the student’s Level of understanding Mode of communication Learning style Level of functioning 30

INSTRUCTIONAL STRATEGIES OBJECTIVE 7 Present the same content in many different ways/modes, such as these: Pictures, line drawings Objects, 3 -D models Videos Role plays Audio Imitation Remember that many children with autism are visual learners. Practice often – repetition is the key. Keep teaching sessions brief. Reinforce students when they behave appropriately. Consider who is teaching, where teaching happens, and who is around. 31

INSTRUCTIONAL STRATEGIES OBJECTIVE 7 You can buy curricula: Anatomically-correct dolls Anatomical models Written and pictorial materials Slide shows and videos These are rarely geared for people with ASD (and are costly) Images are easy to find: Medical and nursing textbooks Patient education materials Sex education books for children at your library You can also make your own materials 32

INSTRUCTIONAL STRATEGIES OBJECTIVE 7 Focusing on teaching specific behaviors may be more successful than trying to teach flexible thinking that can potentially lead to many different behaviors. 33

INSTRUCTIONAL STRATEGIES OBJECTIVE 7 Give direct instruction, but also take natural opportunities to practice and review skills. Remind individuals about “the rules” before they enter situations. Cognitive and behavioral rehearsal Think about how skills will be maintained over time. 34

INSTRUCTIONAL STRATEGIES OBJECTIVE 7 Start sexuality education young and continue it across the lifespan Be patient– these are complex skills! Consider the role that mass media plays. 35

OBJECTIVE 8: DISCUSS SOCIAL AND LIFE SKILLS & THE ROLE OF THE FAMILY 36

SOCIAL SKILLS AND OPPORTUNITIES OBJECTIVE 8 Building social skills is essential for independent living and employment. This may also lessen vulnerability to abuse. Make the extra effort to include students with peers in different activities. Be creative with social involvement: hobbies, recreation and leisure activities, extracurricular activities, volunteering, working. 37

OBJECTIVE 8 A FEW RELEVANT SOCIAL SKILLS… Nonverbal communication skills (eye contact, body language, personal space) Expression of preference Using a telephone/computer Turn-taking Politeness Paying attention Receiving social cues Flexibility with topics of conversation Correcting miscommunication Saying “excuse me” Asking for personal space Giving personal space 38

SEXUALITY-SPECIFIC SOCIAL & LIFE SKILL TOPICS OBJECTIVE 8 Privacy Boundary issues Body part identification Public/private discriminations Masturbation Nudity Personal space Inappropriate touching Inappropriate comments Indiscretion with body language Personal appearance Menstrual care Self-protection Public display of affection Puberty – hygiene and emotional support Sexual health care 39

OBJECTIVE 8 REMEMBER, Developing social skills requires a lot of practice and feedback “Acquiring socialization skills does not happen over night. These skills are developed across years of observation, discussion, practice, and constructive feedback” (NICHCY, 1992, p. 6). 40

OBJECTIVE 8 ROLE OF THE FAMILY IS CRITICAL Parental attitudes and perceptions matter. The family’s values should guide instruction. Parents are often the best teachers–sexuality instruction happens every day. How parents respond to sexual behavior and selfexploration and how parents show affection are all part of sexuality education. It is important to have consistency across settings. A great introduction to the topic: National Information Center for Children and Youth with Disabilities News Digest (1992) Sexuality 41

CONCLUSION 42

WHAT CAN YOU DO? Its important to support sound research on sexuality. Support best practices regarding the development of healthy, self-determined, and safe sexuality. Promote opportunities for individuals to exercise their rights and to develop meaningful relationships with others. 43

CONCLUDING COMMENTS Sexual education is an emotionally charged issue. These emotions can create barriers to the conversations that are needed for the benefit of those individuals who are directly impacted. Parents, caregivers, and teachers need to examine their own attitudes, values, and motives before addressing the needs of the individual with ASD. Thank You ! MJLang@Beacon. Day. School. com 44