Adolescent Issues

1. Adolescent Issues Puberty, Hygiene and Sexuality Chantal Sicile-Kira Autism One 2009

5. Overview of Presentation • Growth and Development • Hygiene and Health • Masturbation • Modesty, Privacy and Personal Safety • Sexuality • Resources for more information

6. Top 13 Things Parents Need to Know about raising an adolescent on the autism spectrum

7. 12. Some teenagers care about smelling good. Or not. 13. Teenage behavior cannot be blamed on mercury or the parents’ genetics. 11. Some teenagers like order and neatness. Or not. 10. Teenagers like to make their own choices. Usually they are not the same as yours. 9. Teenagers learn self esteem at home and school. Or not. • Teenagers do not develop good organizational skills or self-care skills through osmosis.

8. 7. Moodiness and raging hormones is a normal teenage thing. 6. Self-regulation is a needed life skill not practiced by teenagers. 5. Noncompliance is normal teenage behavior. 4. So is whining. 3. Masturbation is normal, teenage activity. 2. Learning about sex from known and trusted adults is not. 1. You will survive the teen years. Barely.

9. “Teenage years were the worst years of my life. When my hormones turned on I began to have unrelenting panic attacks. As if this was not bad enough, then the teasing started. I was called ‘retard’ and ‘tape recorder’ because I always kept talking about the same thing. Walking back from class another girl called me a retard, so I hurled a book at her. This got me kicked out of school.” Temple Grandin, Foreword from Adolescents on the Autism Spectrum by Chantal Sicile-Kira

10. Puberty • Risk of Seizures for 1 in 4 teens on the spectrum • Meltdowns or aggression may increase in some, and decrease in others • Physically mature at same rate as peers, however emotionally less mature • Some have early onset of puberty • Risk of depression

11. Why Puberty is hard on ASD teens • Most do not like change, yet body is changing and they cannot control it • Most do not pick up information by osmosis from siblings or peers or through sitting in Health classes in school • They do not understand why they are feeling different than before • Do not understand all terms or clang used by peers (ie ‘boobs’ instead of breast) • They hear about sex from others but may not understand

12. Sensory Challenges in School • Change classrooms during the day • Special ed classrooms noisy with staff and students coming and going • Different environments to adapt to • Crowds to walk through between classes, lunchtime and locker room • Other students brushing up against student while passing • Different people / voices to get used to • More noise

13. Other Challenges • Social expectations increase • Peer relationships more complex • More demands on social competency

14. Emotional Health - Consider • Important to teach the teen re puberty and body changes of both sexes • Look at sensory / transition challenges • Connection with a trusted adult other than a parent (therapist, uncle, aunt) important • Psychologist / Psychiatrist / medication may be helpful if knowledgeable about ASD teens, and as part of whole educational/ treatment plan (ie look at environmental issues, relationships, etc before medication)

15. Why They Need to Know ‘That is how many of our people will experience puberty in school; left behind and alone and feeling steadily worse about it. People who had time to before, now don't. That time is now shared with people who go around in groups of social pairs. There are rumors of social and even sexual activity that usually only serve to make our kids feel more left out. True, the people telling the stories are usually not nearly as active as they claim to be…

16. …Listening to a group of school boys in locker rooms is like listening to a blind man teach defensive driving. But to the people totally left out, especially autistic boys who have little personal experience to compare with what they are hearing, it sounds true enough.’ Jerry and Mary Newport, Autism - Asperger’s and Sexuality: Puberty and Beyond

17. Now, a fun exercise….. BSAINXLEATNTEARS

18. Puberty • Boys age of onset at 11 or 12 • Girls age of onset earlier, at 9 or 10 • Early onset of puberty possible in some • At latest, should begin to tell them when their bodies begin to change (better to start sooner)

19. What They Need to Know • Need to know what happens to other gender at same time • Need to know they are developing into a woman or man (like mom and dad are already) • Correct name of body parts and what they are used for • Teach the synonyms of words (ie breasts and boobs)

20. Continued • Explain that good and bad feelings will come as part of changing into an adult body. Girls who are interested in logic and facts may be interested in charting their own mood on a calendar to see if there is a cyclical pattern coinciding with their menstrual cycle. • Have a collection of ideas to help adolescent boys and girls when their mood is low (remember risk of depression)

21. Explaining the Obvious is Important • Some changes will only be associated with the same sex (e.g. a boy will not begin to grow breasts, but a girl will) • Hair will only grow in certain places (the child may think the whole body eventually becomes progressively covered in hair like a werewolf) • Explain that extra hair just grows on the underarms and on pubic area in women • Explain that extra hair grows on the underarms and on pubic area, and on the chest, and face and chin of a man.

22. Some Topics for Puberty Social Stories for Girls • ‘I am growing into a woman’ • breast development and widening of the hips (could be titled ‘the shape of my body will change’) • pubic and underarm hair development (title ‘extra hair will grow) • onset of menstruation (title ‘I will begin to have my period’) • growth acceleration (title ‘I will get taller’)

23. Topics for Puberty Social Stories for Boys • ‘I am growing into a man’ • growth acceleration (title ‘I will get taller’) • pubic, underarm, and facial hair development (title ‘extra hair will grow’) • testicular and penile enlargement (title ‘my body will look different’) • spontaneous erections, sperm production, wet dreams (title ‘my body will do new things’) • voice deepening (title ‘my voice will sound different’)

24. Hygiene and Health • Hygiene needs to be addressed and good habits to be developed and emphasized • Explain WHY important (social stories tailored to ability level) • Health reasons - Stay healthy • Social reasons - Make friends

25. Self- Care • Analyze problem areas in self-care • Task analysis - ie washing hands • break down each task into small steps • take data on each step • Work on problem areas separately • Put back into task • Start with step before • To teach new task, backward chain

26. Task Analysis • Note prompt levels: • I - independent • V- verbal • G - gestural • M- model • Pos - positional • Pph - partial physical • Fph -full physical

27. Fix problem areas in self-care routines • Desensitization of sensitive areas • Hand over hand for motor memory • Visual schedules • Verbal schedules • Use of different products

28. Masturbation

29. Masturbation • Natural activity that you may not necessarily teach, but contain if it occurs • You will be able to control where and when, but you will not be able to stop it • Home and school need to work together on this if it is occurring outside the home • Teen must be allowed a ‘private place’ at home he can masturbate

30. Concept of Private vs Public • Picture icon with word • Private - figure in underwear • Public figure with clothes • Put outside / inside appropriate areas or rooms at home and special ed classroom.

31. continued May be necessary to teach person how to masturbate if he or she is not figuring it out on own and becoming very frustrated and aggressive due to this.

32. Modesty, Privacy, Personal Safety, Sexuality

33. Modesty, Privacy, and Personal Safety • Teaching notion of privacy starts with familiar adults and how they treat the teen • Asking permission before doing physical activity on/with a person (ie physical therapy) • Explaining appropriate and inappropriate touching • Teach concept of modesty at home • Concept of privacy needs to be taught and reinforced in all environments

34. Why it is important children and teens understand about appropriate behavior from an adult: The abuse rate for children with a developmental disability is 3.4 times the rate of children without disabilities (Boystown., 2001, Patricia Sullivan).

35. Continued • Teach the right to say or communicate ‘NO” or “Go away” in appropriate situations • Teach to not touch own ‘private parts’ in public • Teach to not touch other people’s ‘private parts’ in public • Teach them it is never OK for an adult to do certain things to them • Teach them to communicate if an adult has asked them to do certain things, or has touched them inappropriately

36. Relationship Boundaries – different relationships, different boundaries : • Appropriate types of conversation and behavior for each type of various relationship • The notion of Circles: • Private circle • Hug circle • Far away hug circle • Handshake circle • Wave circle • Stranger circle

37. Wave Circle Stranger Circle Handshake Circle Far-Away Hug Circle Hug Circle Private Circle

38. Friendship vs Romantic Interest • Adolescent ‘crush’: ASD teen may not be able to ‘read’ the cues from another person as to whether the interest is reciprocal. Teen needs to have explicit instruction about indications that someone likes them, as opposed to being interested romantically. • Attraction to other person: • feeling tingly when being near another person, • thinking about that person a lot of the time

39. Continued • Due to social immaturity, ASD teen may not show interest in others romantically until much later than their peers, despite their sexual maturity. • In this case, need to explain to teen that attraction to another person may happen in the future.

40. Continued • Talking to the teen can help demystify the change in their classmates’ behavior from mainly same-sex interaction, to mixed interaction, with flirting, touching, showing off for the benefit of potential girlfriends / boyfriends • Helps them make sense of what is going on around them • Helps them to understand that behaviors such as teasing, playful punching, etc. may be an indication of flirting rather than an offence needing to be reported to the teacher

41. Interested Giving strong eye contact Leaning forward to hear what is said Smiling ‘Flipping’ or touching hair Laughing at your jokes Other person initiating conversation Not Interested Looking away Turning away Moving away Looking unhappy Having arms folded Not responding when talked to Teach Interested / Not Interested

42. Sexuality • Sexual feelings are natural • Some individuals on the spectrum want intimacy and want to get married, others do not • Even if the teen is not interested in relationships or the idea of marriage and intimacy, it is important to teach them about sex • they may be interested as they get older • they need to understand what other teens are discussing • they are at a higher risk of getting abused

43. Remember : HOW you say it and teach it, is just as important as WHAT you say and teach

44. Some Guidelines • Determine your comfort level in discussing sexuality and sex with your youth. • Look for resources • Find specialist if you feel it will be helpful • Determine where your youth is at in their development. • Obtain social and emotional age appropriate materials to use while teaching your youth.

45. continued If the youth is physically mature but delayed socially and emotionally, communicate openly and consistently with the youth's teachers, care providers, and if appropriate with local authorities, on where the youth is at in development, as well as what you are teaching them. This will help prevent social and/or legal issues arising from unintentionally inappropriate public behavior.

46. Before Seeing Specialist or Teaching Child, Consider: • What are the youth's language and communication skills? • What are the youth's abstract reasoning skills? • Is the youth hyper or hypo sensitive to: Visual, Auditory, Tactile, Smell, or Taste? • Does the youth have any other physical challenges that could affect learning? • Where is the youth’s social and emotional (S/E) age in comparison with their chronological age and intellect?

47. Teach Early, Teach Often The Basics: • Sexual awareness - What is sex, what is acceptable behavior and when is it acceptable? • Boundaries - What boundaries should we have for our bodies, as well as when interacting with others? • Who, When, Where and How of sex, sexuality and personal boundaries.

48. In Other Words, Teach : • Sex education (the birds and the bees) • Appropriate behaviors from others • Appropriate behaviors towards others • Giving or withholding consent (self advocacy) • Next lessons: • What is heterosexuality, What is homosexuality, people’s different choices • sexually transmitted diseases and AIDS

49. Important for teen’s safety that he / she should be able to identify places on his/her body where it is appropriate to be touched by others they are not on an intimate relationship with • Important that teen be able to tell someone when he/she is touched in an ‘off limits’ area of his /her body

50. Resources • Asperger’s Syndrome and Sexuality: From Adolescence through Adulthood by Dr. Isabelle Henault • Autism - Asperger’s and Sexuality: Puberty and Beyond by Jerry and Mary Newport. Jerry Newport • Taking Care of Myself: A Hygiene, Puberty and Personal Curriculum for Young People with Autismby Mary Wrobel • Handmade Love (men) and Finger Tips (women) books and videos at www.diverse-city.com