1. Sexual Health for Youth with Spina Bifida
Veronica Meneses MD, MSHS
TSRHC

3. Dimensions of Sexuality
Physical
Psychological
Emotional
Social/Cultural
Spiritual
Important for ALL individuals…beyond medical diagnosis or disability

4. Maslow’s Hierarchy of Human Needs

5. Learning Goals Talk to your youth about sexuality
Identify emergence of sexuality from infancy
Describe typical stages of adolescence, puberty

6. Learning Goals
Discuss myths about sexuality of youth with disabilities
Characterize sexual development of youth with Spina Bifida
-Physical Aspects and Health care needs
-Social, Emotional, and Psychological functioning
-Safety
-Spirituality

7. From the Beginning… Humans are sexual beings from birth on
Masturbation is typical in infants
May look like abdominal pain, seizures, movement disorders
Infant may have irregular breathing, vocalizations, quiet grunting, facial flushing, sweating, hand movements
Male infants may have erections during diapering
Boorstein 2010

9. Children Ages 2-6
Positive feelings about sexuality can develop from early childhood (Labhard et al. 2010)
Parents, caregivers, teachers, doctors influence how child feels about body, feelings, behaviors
Model respect, privacy
Reassure about body parts and functions

10. Common, Typical Sexual Behaviors in Children ages 2-6
Touching genitals, masturbation in public or private
Looking at or touching peer’s or new sibling’s genitals
Showing genitals to peers
Standing or sitting too close
Trying to look at nude peers or adults
Kellogg, 2009

11. Less Usual, but still ok, for children ages 2-6
Rubbing body against another
Trying to “tongue” kiss
Touching genitals of peer or adult
Crude imitation of movements associated with sexual acts
Behaviors may sometimes disrupt others, but not persistently
Temporary, usually respond to distraction
Kellogg 2009

12. What does a young child know about sex?
Little sexual knowledge
Basic knowledge: gender identity, genital differences, sexual body parts, non-sexual functions of genitals (pregnancy, birth, breast feeding)
Knowingly or unknowingly, parents and caregivers are “getting them up to speed” by words, actions, reactions
Brilleslijper-Kater 2000

13. Sexual Knowledge in Young Children
By age 5-6, has limited knowledge of pregnancy, birth, reproduction, adult sexual behavior
In children with learning challenges or intellectual disability, this may develop at different chronological age
Boorstein 2010

14. Be open and honest, tailor to developmental level Stay calm and cool
What Parents Can Do
Be open and honest, tailor to developmental level
Stay calm and cool
Gentle guidance
Redirection and limit-setting
Kellogg, 2009

16. Middle Childhood: Ages 5-8
Name each body part and its function
Boys: nipples, penis, scrotum, testicles
Girls: breasts, nipples, vulva, clitoris, vagina, uterus, ovaries
Boys and girls: their body parts feel good when touched

17. Middle Childhood With each birthday, your body changes!
You will have many physical changes and become a teenager at puberty
You must reach puberty to be able to have children

18. Middle Childhood Sperm and egg join to create a baby
Intercourse with penis inside of vagina is usually how they join
Pregnancy is when the baby grows inside a woman’s body
Babies come out through the vagina and can drink milk from the mother’s breasts
Boorstein 2010

19. Stages of Adolescences
Early: ages 11-13
Middle: ages 14-18
Late: ages 19-21
In youth with Neurodevelopmental Differences, puberty may come earlier—”precocious puberty”
….also may come later, especially if condition affects nutrition and physical growth

20. Early Adolescence: Physical Development
Puberty-> Body hair, more perspiration and oil in hair and skin; need deodorant
- Girls develop breasts, hips widen, menstruation begins
-Boys have growth in penis and testicles, wet dreams, voice deepens
Enormous physical growth
Greater sexual interest, “crushes, early experimentation”
AAP 2008

21. Early Adolescence: Cognitive
Increasing capacity for abstract thought
Mostly interested in present time, limited thoughts about future
Intellectual interests broaden, become more important
Deeper thinking: moral

22. Early Adolescence: Social Emotional
Struggle with forming sense of identity
Feel awkward about self and body:
“AM I NORMAL?”
Discover parents’ imperfections; more conflict with parents
Peer group becomes supreme

23. Early Adolescence: Social Emotional
Regress to “childish” behavior, especially when stressed
Moods Swing
Test rules and limits
Interested in privacy more than ever

24. Middle Adolescence: Physical
Complete puberty
Girls grow more slowly, boys keep going
Explore and experiment with sexuality
Seek intense romantic relationships
Try serial monagamy

25. Middle Adolescence: Cognitive
Continue to gain abilities in abstract thinking
Set better goals; still do not full understand risks and consequences
Interested in moral reasoning
Think about: “What is the meaning of life?”

26. Middle Adolescence: Social-Emotional
Intensely involved with Self: change between high expectations and poor self-esteem
Take risks, experiment
Continue adapting to changing body
“I AM STILL NOT SURE IF I AM NORMAL”

27. Middle Adolescence: Social-Emotional
Tend to distance selves from parents, drive for independence
Set on making friends and rely on them more, popularity is key
Feel love and passion

28. Late Adolescence: Physical
Young women usually reach full development
Young men keep growing in height, weight, muscle mass, body hair
Accept and enjoy sexual self with greater maturity

29. Late Adolescence: Cognitive
Think ideas through
Delay gratification
Examine inner experiences
More concerned for future
Continue to care about moral reasoning

30. Late Adolescence: Social-Emotional
Have stronger sense of Self
Have more stable emotions
Have greater concern for others
Are more independent and self-reliant

31. Late Adolescence: Social-Emotional
Still consider peer relationships important
Develop more serious relationships
See more value in social and cultural tradition
Improved communication and decision making skills about sex
Adapted from the American Academy of Child and Adolescent’s Facts for Families. © All rights reserved. 2008
Garofalo & Forcier, 2010

32. Special Points about Youth with Spina Bifida
Wide range of cognitive and learning profiles
Intellectual Disability may be present
Autistic traits may be present
Other diagnoses, genetic issues may be present
Both over-weight and under-weight may be challenges

33. Myths about Sexuality of Youth with Disabilities (Intellectual or Physical)
Not able to participate in sexual activities or long-term, satisfying relationships
Are not negatively affected by abuse
Are asexual: no sexual thoughts, feelings, needs, desires OR
Are hypersexual, deviant
Campbell 2010

34. More Myths Need protection from society
Teaching about sexuality “will cause more problems”
Their sexual behavior is aberrant/wrong

35. Research on Sexuality in Individuals with Developmental Disabilities
Very limited, small number of cases studied
Reports from parents, caregivers, professionals
Mismatch:
-parents report little or no sexual interest except masturbation and flirting
- professionals describe higher level of sexual interest and explicit sexual behavior
Campbell 2010

36. Considerations for Youth with Spina Bifida
Puberty/sexual development progresses despite diagnosis
Hormones trigger feelings, desires, behaviors
Cognitive understanding of sexuality may be different than chronological age: Intellectual Disability, learning challenges, or Autistic features
Youth may be more sexually mature, understand more, in some areas than others

37. Precocious Puberty More common in females
May begin menstruating 1 ½ - 2 years before peers
Bone Age scan and doctor visit
Analogues of gonadotropin releasing hormones (leuprolide) may decrease sex hormone levels, stop advancement of puberty and periods, but do not improve adult height
(Liptak 2003, Labahrd 2010)

38. Puberty in Boys Boys may have wet dreams 1 ½ to 2 years before peers
Higher incidence of undescended testicles (cryptorchidism), should be addressed in infancy
(Liptak 2003, Labhard 2010)

39. Menstruation Independence in bladder care before periods start is goal
Bowels may be looser->adjust diet and bowel routine
Can use pads, tampons, or both
May need water soluble lubricant (KY Jelly, Astroglide) to insert tampon (sitting or standing)
Change pads/tampons every 4 hours, with CIC, and clean genitals
Labhard 2010

40. Management of Menstruation
Painful, irregular periods, behavioral issues:
-NSAIDs before symptoms start (correct, scheduled doses)
-estrogen/progesterone, progestin
-surgical
Estrogen contraindicated if youth or family member has history of stroke at early age or inflammatory condition (lupus)
Reassurance
Hornberger 2010

41. Spontaneous Erections
It is okay! Help him cope
Remain seated, cover with shirt or book
Do not touch self
Avoid comments
Briefs better than boxers; some pants hide
Positioning
Boorstein 2010

42. Wet Dreams Can frighten or embarrass
Reassure and explain that it is normal
Prepare for this using language he can understand
Teach specifics of self-care: changing pajamas, sheets, washing
Boorstein 2010

43. Hygiene
Emphasize importance of bath, shower, deodorant according to level of understanding
As youth gets older, urine and bowel odor become less socially acceptable and may result in bullying, social isolation
Independence in bladder and bowel routines promotes self-esteem and social acceptance
Consider fine motor skills, adaptive and therapy needs
Labhard 2010, Boorstein 2010

44. Physical Aspects of Sexuality for Youth with Spina Bifida
Males and females have decreased sensation in perineum and may have problems experiencing orgasm (higher lesions)
Body may make up for lack of sensation in one area by increasing it in another area: nipple line, back of neck/ears, shoulders, elbows, armpits
Develop awareness of sensitive areas with partner
Liptak 2003; Labhard 2010

45. Physical Aspects About 75% of males can have erection
The lower the lesion the more likely that erection possible
May not be able to sustain
Sometimes semen may go backwards into bladder
Erection aides: Viagra
Couple may explore other ways to have sexual pleasure other than act of intercourse
Liptak 2003; Labhard 2010

46. Physical Aspects
Females with spina bifida have normal fertility and can have children
Males may have fertility challenges but should assume they are fertile unless medical tests show they are not
Electroejaculation may be used in men wih spinal cord injury: nerves of penis are electrically stimulated, sperm obtained and used for artificial insemination
Labhard 2010

47. Sexual Activity: Planning is Important
Males and females: apply water-based or silicone based lubricant to genital areas before and during intercourse to avoid pressure ulcers and skin irritation
Good hygiene prevents urinary infections
Wash and empty bladder and bowel before sex
Empty bladder again after sex
Labhard 2010

48. Birth Control Hormonal: Birth control pills, injections, implants
Barrier: Diaphagms, Latex-free polyurethane condoms (latex allergies)
Surgical Procedures: Tubal ligation, Vasectomy
Labhard 2010

49. Sexually Transmitted Infections
Gonorrhea, Chlamydia, HIV/AIDs, Hepatitis
Polyurethane condoms are best protection for those who are sexually active
Learn partner’s history, risks, testing as needed

50. Pregnancy
Take Folic Acid: 4000 mcg daily for 1-3 months before trying to conceive
Keep a healthy weight
Talk with physicians to make sure her medications safe during pregnancy
Avoid urinary tract infections (early labor and premature birth)
Use home monitor device if unable to feel contractions
Labhard 2010

51. Genetic Counseling
If either partner has spina bifida, there is 3-5% chance of having child with spina bifida
Important to consider what raising a child will mean
Folic acid reduces risk
Labhard 2010

52. Female Clinic Visits
Does obstetrician-gynecologist or other physician have knowledge and experience about spina bifida?
Are clinics accessible?
Avoid positioning with stirrups
Labhard 2010

53. When there is Intellectual Disability
Sexual expression may be like that of a younger child and this is normal (masturbation, crushes)
May be impulsive and concrete
Desires may be strong with few outlets
May have little interaction with peers with ID
May feel rejected in inclusive settings
Boorstein 2010

54. Sex Education for Youth with Spina Bifida with Intellectual Disability
Learn boundaries, modesty in social settings
Switch from hugs to high fives early on
Teach to cognitive and social level, culture
Explicitly teach about who, when, where can touch private areas
Model respect, privacy
Use concrete instruction, multiple media, check comprehension and repeat
Harris 2010

55. Noverbal Learning Problems and other Learning Issues
May need guidance remembering, planning, organizing self-care around sexual health and activitiy
May also need concrete, visual educational methods
Assessing comprehension is important

56. When There are Autistic Traits
Lack typical awareness of personal space/boundaries (socially learned)
Social interests without good skills (miss cues)
Rigid Behaviors may be seen as “stalking”
Immaturity, Legal problems may arise
Internet/social media may be used inappropriately (pornography)
Boorstein 2010

57. Sex Education for Youth with Spina Bifida who have Autisic Traits
Directly teach social rules and norms
Adjust to cognitive and functional level
Help understand emotions, impulses
May need to cover sexual orientation and gender identity
Individual Instruction is brief, concrete, specific, visual, in real-life context, repeat frequently
Cambell 2010; Sullivan & Caterino 2008

58. Masturbation Significant concern for families, school
Professionals should explicitly address with youth and family
Remember developmental level
Redirect, give little attention to if in public
Boorstein 2010

59. Masturbation
If youth has problems generalizing, understanding social contexts, limit to
bedroom/door closed or
bathroom/shower
Knock if youth’s door closed
Harris 2010

60. Orientation
No reason to suspect that homosexuality or bisexuality more prevalent in youth with developmental disabilites
Mental health support is crucial if there is discrimination, bullying, depression, poor self-esteem

61. Paraphellias/Sexual Fetishes
May occur in both higher and lower functioning individuals
May occur slightly more frequently in individuals with autism vs ID
Allow fixation with stockings, underwear etc.
Use redirection vs elimation
Reassure parents and school
Attend to safety issues
Boorstein 2010

62. Dating Many parents decide age to begin, cultural
Means different things to different people
May include shared recreational/leisure activities and social exchange
Paying for date does not obligate sexual activity
Break-ups create emotional pain, youths need support
Campbell 2010

63. Supervised Dating Groups, chaperones, shadows, double dates
Independence according to needs
Some youth may progress and be able to be on their own
Some will need highly structured settings into adulthood
Intimacy does not equate with physical acts
Boorstein 2010

64. Cohabitation/Marriage
Possible for adults with spina bifida
May require caregiver/parental support, intensity depends on unique needs, functioning
Barriers may come from bureaucratic regulations: SSI benfit reduced if married, guardianship legalities, supported living program policies
Harris 2010

65. Tips on “The Talk” Start early, before puberty
Use real names for sexual organs
Learn with your child…there will always be something new for both to learn
Be honest, direct, matter-of-fact
Begin where child’s understanding—and interest– is (masturbation, kissing, body changes)

66. Tips Listen to and ACCEPT child’s feelings
Let child know it is safe to be open with you and normal for people with spina bifida to have sexual needs
Teach as you go through daily life (not preach)
Bring up and discuss important topics
Role-play to prevent abusive situations: physically, sexually, verbally, emotionally
Labhard 2010

67. Sex Education in U.S. Schools
General Requirements: Sex Education and HIV Education
22 states and the District of Columbia mandate sex education
20 states and the District of Columbia mandate both sex education and HIV education
2 states only mandate sex education

69. New National Standards
January 2012: first-ever national standards for sexuality education in public schools published in the Journal of School Health
Be Age and Developmentally Appropriate
Focus on social and personal competence
Minimum, essential content given for K-12

70. Seven Content Areas Anatomy & Physiology
Puberty & Adolescent Development
Identity
Pregnancy & Reproduction,
Sexually Transmitted Diseases & HIV
Healthy Relationships
Personal Safety

71. FYI: Texas No Mandate for Sex or HIV Education When provided must be
-age appropriate
-stress abstinence
-include information on importance of sex only within marriage
Requires only negative information on sexual orientation

72. FYI: Texas
When sex/HIV education is provided: -parent must be notified (do not have to consent) -parent can opt-out

73. Advocacy Know your state’s mandates: helps you advocate for your youth
Speak for youth’s and family’s needs and values
Make it Part of ARD/IEP

74. Vulnerable to Abuse Strong reliance on others for self-care needs
Mobility/access problems
Cognitive and Social Differences
Communication Challenges
Multiple caregivers
Learned compliance
Trouble knowing forced sex from consensual sex
Campbell 2010, Lambhard 2010

75. Prevent Abuse Build communication/language, mobility
Build knowledge, self-esteem, independence
Youth who is independent in bladder and bowel routines will need less intimate care-giving
Ask about it, will not cause it
Know caregivers, limit number
Teach about healthy relationships, avoid isolation

76. Report Abuse
National Sexual Assault Hotline, open 24 hours per day, 7 days per week
You do not need all the facts, details
Doctors, Schools, Churches can help
Counseling/Mental Health Support is top priority, regardless of cognitive level or type of physical disability
Labhard 2010

77. http://teachers. teachingsexualhealth

78. References
Boorstein et al SDBP 2010 Workshop Puberty and Sexuality for Youth with Developmental Disabilites and their Families
Labhard et al 2010 Sexuality and Spina Bifida
Spina Bifida Association 2006, Health Guide for Parents of Children Living with Spina Bifida
Brilleslijper-Kater 2000
Servais
Kellogg 2009
Koller 2000