Sexuality and Sexual Education for Individuals with ASD Bret Gardner M.Ed., BCBA Autism Specialist

1. Sexuality and Sexual Education for Individuals with ASD Bret Gardner M.Ed., BCBA Autism Specialist HowardCenter Portions of training adapted from presentations by Dr. Peter Gerhardt, Lisa Mitchell & Rya-Hardee-Fauth

2. Sexuality and Sexual Education for Individuals with ASD • ACTIVITY • Take a moment to think about how this training applies to you… Perhaps your work with current clients, past clients, or think about your younger clients and their future sexual development

3. “Sex and 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.” – Dr. Peter Gerhardt

4. Lisa Mitchell’s Top 10 Reasons Why We Should Teach Human Sexuality Education To Individuals With Autism Spectrum Disorders

5. Top 10 10. Low Reading Ability Hinders Learning From Written Materials 9. Many Individuals With ASD Do Not Have Even Basic Knowledge About Sexuality 8. Many Individuals With ASD Do Not Know When & Whom To Ask Questions 7. To Prevent The Spread Of HIV/AIDS & STDs Within The DD Population 6. The Internet and other readily accessible media

6. Top 10 continued 5. They Have The Same Hormones & Urges & Need To Make The Same Choices As Their Peers 4. Many Have Low Self-Esteem & May Do Anything To Be Accepted By Peers 3. Sexual Abuse 2. Limited Opportunities For Socialization & Normalizing Socio-Sexual Experiences, Compounded By Social Skill Deficits 1. Because They Are People & Like All People, Individuals with Autism , Have The Right To Learn All They Can

7. Most Important Reason! • Sexual stimulation is a primary/unconditioned reinforcer for all organisms • Same category as food, water, warmth etc. • This is a need that has to be met for an individual. • If not taught how to meet this need appropriately then inappropriate behavior will occur.

8. Myths about Sexuality • ACTIVITY • Turn to the people at your table and generate a list of several “myths” about individuals with Autism and sexuality; i.e. what do people in the general population assume about those with ASD and their sexuality?

9. 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

10. 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 spectrum

11. How does sexuality develop? • From the “Sexuality and Autism Danish Report”-http://www.autismuk.com/?page_id=1293 • Sexuality develops through social interaction and communication, through physical contact, play and the assimilation of social rules and norms. • Wow… No wonder people on the autism spectrum have difficulty with understanding and developing sexuality!

12. Factors Impacting CompetentDecision Making • Individual’s history of decision making • Cognitive skill level • Individual communicative competence • Individual social competence • Long and short term consequences of previous decisions • Relationship between current skill sets, desires and rights • Level of individual support, direction and oversight

13. ASD Sexuality Concerns • ACTIVITY • With your group, generate a list of concerns that may be experienced by individuals or care givers supporting those with ASD in regards to sexuality

14. ASD Sexuality Concerns • 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.

15. ASD Sexuality Concerns • In two 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).

16. ASD Sexuality Concerns • 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 neuro-typically developing 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).

17. ASD Sexuality Concerns • 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 neuro-typical teens, (i.e., other teens), is generally not available. – Volkmar & Wiesner, 2003

18. ASD Sexuality Concerns • Sexual Curiosity • It’s normal to wonder about their own body parts and the body parts of others. If they are not taught about certain changes (E.g. growing hair, growing body parts), the individual may seek out answers to certain questions they have. – E.g. A student “peeking” at nearby urinals...

19. 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. • Individuals with autism can be concrete thinkers who interpret things literally, so… • Be frank during instruction • Provide clear visual and verbal examples • Avoid euphemisms (E.g. euphemism for male masturbation) initially, but they made need to be taught later on

20. Some responses of adults with autism during an assessment of sexual knowledge • Q: Tell me about this picture. • A: “The people were sitting on the couch being friends.”

21. Some responses of adults with autism during an assessment of sexual knowledge • Q: What does this picture show? • A: “Two people lying on a towel.”

22. Before you start this type of instruction… • Work closely with the student’s family when planning for instruction regarding puberty/sexuality. • Parents may have strict values regarding sexuality, and their values should be respected.

23. Examples/ Ideas for teaching individuals with Autism about Sexuality • ACTIVITY • Break off into groups and discuss examples or ideas that you have either 1) experienced with this topic, 2) have heard about the use of or 3) think might be beneficial for individuals with ASD. Identify and plan to share several ideas of topics and strategies for younger (elementary age students) and older (middle/ high school age students).

24. Provide Accurate 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

25. Provide Accurate Information • 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)

26. Provide Accurate Information • Public versus private behavior • Good touch versus bad touch • Proper names of body parts • “Improper” names of body parts/slang terms • Personal boundaries/personal spaces • Avoidance of danger/Abuse prevention • Social skills and relationship building • Dating skills • Personal responsibility and values

27. Private vs. Public • What is Private? What is Public? • Brushing ones hair? • Holding hands? • Touching your genitalia? • Using mouthwash? • Flatulence? • Kissing your mother? Your girl/boyfriend?

28. Early Childhood Years • Begin to teach the idea of modesty early on – one way to teach modesty in to model it • Private areas – their own – where they are (under swimsuits) and who can touch those areas – other people’s private areas- do not let your kids become too “casual” with their touching – Bath times are good times to discuss private areas, touching, etc. • Be aware of how overly-friendly the child may be with strangers or people they may not know very well – discourage sitting in laps and hugging in those situations

29. Preschool through Elementary • Group Discussion • What do you think are some important topics to teach to younger children?

30. Preschool through Elementary • Boys v. girls • Public v. private • Basic facts including body parts • Introduction to puberty (your changing body) • Introduction to menstrual care • Appropriate v. inappropriate touching

31. Teaching Appropriate Touch • Who to touch and how to touch them may need to be directly taught through the use of visuals, social narratives, and role plays. • Tap Shoulder/ Handshake/ Hug/ Kiss/ Pat Behind (Mother, Friend, Boy/Girlfriend, Stranger) • A chart with this information could be created and completed with the student. This, and any activity like it, would probably need to be reviewed frequently.

32. Puberty • Puberty - the process of physical changes by which a child's body matures into an adult body capable of sexual reproduction to enable fertilization. • Physical growth; height and weight—accelerates in the first half of puberty and is completed when the child has developed an adult body.

33. Puberty • Average age of puberty beginning – Boys – 11.5-12 years – Girls – 10.5 years • Causes of “precocious puberty”, which has been shown to occur in up to 80% of ASD kids – child’s size/obesity, high testosterone levels, improperly functioning hypothalamus • Anxiety, especially in females on the spectrum, tends to really escalate during puberty. AgeofAutism.com

34. Here are some ideas to assist girlsin handling puberty: • Put red food coloring in your daughter underwear to show what the blood might look like when she starts her period. • Mother could model the steps of wearing and changing a sanitary pad. If possible, include other girls in the house as well. – Be aware of sensory issues and the comfort of certain feminine products

35. Here are some ideas to assist girlsin handling puberty: • Mark the pad and panties with a different color to show where the pad should be placed in her underwear. • Make a visual schedule of how often the sanitary pad should be changed. • Remember her school schedule. Try to arrange the changing time with the times that she would change classes.

36. Here are some ideas to assistboys at puberty: • Don’t overreact or under react. Remember, he probably doesn’t have any idea of what is happening to him when he has, for example; nocturnal emissions (aka “wet dreams”). • Go to the library, internet, or bookstore to read about how boys bodies change during puberty. • Use visuals to show them some of the changes that will probably occur. • Let them know what is to be expected so that they will be less likely to have false notions about their body. E.g. The boy who thought his penis was going to snap every time he had an erection. • Teach how to cover up an erection

37. 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 or other appropriate wear – Caregivers should model knocking on closed doors before going in (American Academy of Pediatrics, 1996; NICHCY, 1992; SIECUS, 2001)

38. Middle School to High School • Group Discussion • What do you think are some important topics to teach to older children?

39. Middle School to High School • Personal Health & Hygiene • 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)

40. Middle School to High School • Public restroom/locker room use • Bathroom Etiquette Video The Urinal Game • Attraction and sexual feelings • Personal responsibility and family values • Love v. sex • Laws regarding sexuality • Pregnancy, safe sex, birth control

41. 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)

42. Masturbation – Preventing Problems • Designate where it is OK to masturbate – Individual’s bedroom – Possibly avoid teaching use of bathroom • Teach rules for appropriate time/place • Teach that sometimes it is not an option (E.g. school) • Provide private time • Schedule private time and help individual understand the schedule (Baxley & Zendell, 2005; Koller, 2000; NICHCY, 1992; Volkmar & Wiesner, 2004)

43. Masturbation – 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, or other designated spot, if available • Reinforce student when he/she is engaging in appropriate behavior

44. Relationships and Dating • Teach and discuss the different types of romantic relationships • Make sure the individual is aware of any sensory sensitivities they may have (sound, touch, etc) and how those sensory differences could affect a date/relationship • What attracts a mate? – Physical Appearance? (hair, clothes, cleanliness, physique...) – Independence? – Social skills? – Confidence?

45. Aim to be Approachable • Let children know it is always good to ask • It is ok for you to be embarrassed or not know the answer • Be proactive if your child doesn’t ask, you could initiate a conversation • Provide information at the person’s level of understanding, using their preferred communication style

46. Positive Responses to DifficultQuestions • Make every attempt to answer their questions. • “That’s a very good question and I’m glad you asked” • “That’s a very good question. What made you think of that?” • “That’s a really good thing to talk about as soon as we get home, OK?” • “I don’t know the answer, but let’s find out together.”

47. Overall Guidelines • We must teach students behavior that will be socially acceptable and appropriate in adulthood as well a sin childhood. • There is to be no disapproval of masturbation, since for many students, it may be the only appropriate kind of sexual satisfaction available to them. Students must be taught that masturbation in public is not acceptable and must be informed as to when and where it is specifically allowable. • We cannot encourage behavior that will lead to frustration and disappointment for the student. Romance may need to be put aside for more realistic social encounters geared to expectations of friendly sharing of activities. Source: Benhaven (NH) School Policies

48. General Ideas • Remember to use the same teaching strategies that you have used to teach your children other skills. Apply these strategies to teaching them about “puberty happenings” (erections, menstruation and nocturnal emissions, etc) as they go through puberty. • Some of these strategies may include: – visual schedules/checklists – social narratives – videos – facts in books – pictures of what is happening/will happen to their bodies – stories to predict what might occur

49. References • Presentation adapted from Dr. Peter Gerhardt http://www.howard-autism.org/docs/Workshops/Gerhardt.pdf • Presentation adapted from Lisa Mitchell http://www.outreach.psu.edu/programs/autism/files/48mitchell.pdf • http://www.ageofautism.com/2008/04/mercury-testost.html • Book, “Intimate Relationships and Sexual Health”. Catherine Davies, Med. AAPC, 2012 • Book, “Taking Care of Myself”. Mary Wrobel. Future Horizons, 2003. • Mitchell, J. & Popkin, M. (1983). The pathophysiology of sexual dysfunction associated with antipsychotic drug therapy in males: A review. Archives of Sexual Behaviour. Vol. 12, No. 2. pp 173-183.

50. Questions Comments Discussions ???