Transcript Sexual Health for Youth with Spina Bifida

Sexual Health for Youth with
Spina Bifida
Veronica Meneses MD, MSHS
TSRHC
Dimensions of Sexuality
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Physical
Psychological
Emotional
Social/Cultural
Spiritual
Important for ALL individuals…beyond
medical diagnosis or disability
Maslow’s Hierarchy of Human Needs
Learning Goals
• Talk to your youth about sexuality
• Identify emergence of sexuality from infancy
• Describe typical stages of adolescence,
puberty
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
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
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
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
Less Usual, but still ok, for children
ages 2-6
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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
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
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
What Parents Can Do
• Be open and honest, tailor to
developmental level
• Stay calm and cool
• Gentle guidance
• Redirection and limit-setting
Kellogg, 2009
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
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
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
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
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
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
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
Early Adolescence: Social Emotional
• Regress to “childish” behavior, especially when
stressed
• Moods Swing
• Test rules and limits
• Interested in privacy more than ever
Middle Adolescence: Physical
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Complete puberty
Girls grow more slowly, boys keep going
Explore and experiment with sexuality
Seek intense romantic relationships
Try serial monagamy
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?”
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”
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
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
Late Adolescence: Cognitive
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Think ideas through
Delay gratification
Examine inner experiences
More concerned for future
Continue to care about moral reasoning
Late Adolescence: Social-Emotional
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Have stronger sense of Self
Have more stable emotions
Have greater concern for others
Are more independent and self-reliant
Late Adolescence: Social-Emotional
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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
Special Points about Youth with
Spina Bifida
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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
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
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• Are hypersexual, deviant
Campbell 2010
More Myths
• Need protection from society
• Teaching about sexuality “will cause more
problems”
• Their sexual behavior is aberrant/wrong
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
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
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)
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)
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
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
Spontaneous Erections
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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
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
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
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
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
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
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
Birth Control
• Hormonal: Birth control pills, injections,
implants
• Barrier: Diaphagms, Latex-free polyurethane
condoms (latex allergies)
• Surgical Procedures: Tubal ligation, Vasectomy
Labhard 2010
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
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
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
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
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
Sex Education for Youth with Spina Bifida
with Intellectual Disability
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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
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
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
Sex Education for Youth with Spina Bifida
who have Autisic Traits
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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
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
Masturbation
• If youth has problems generalizing,
understanding social contexts, limit to
bedroom/door closed
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bathroom/shower
• Knock if youth’s door closed
Harris 2010
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
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
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
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
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
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)
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
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
https://www.guttmacher.org/statecenter/spibs/spib_SE.pdf
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
http://www.futureofsexed.org/documents/josh-fose-standards-web.pdf
Seven Content Areas
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Anatomy & Physiology
Puberty & Adolescent Development
Identity
Pregnancy & Reproduction,
Sexually Transmitted Diseases & HIV
Healthy Relationships
Personal Safety
http://www.futureofsexed.org/documents/josh-fose-standards-web.pdf
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
FYI: Texas
When sex/HIV education is provided:
-parent must be notified (do not have to
consent)
-parent can opt-out
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
Vulnerable to Abuse
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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
Prevent Abuse
• Build communication/language, mobility
• Build knowledge, self-esteem, independence
• Youth who is independent in bladder and
bowel routines will need less intimate caregiving
• Ask about it, will not cause it
• Know caregivers, limit number
• Teach about healthy relationships, avoid
isolation
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
http://teachers.teachingsexualhealth.ca/teaching-tools/characteristics-of-a-sexually-healthy-teen
References
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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
http://www.futureofsexed.org/documents/josh-fose-standards-web.pdf
http://www.siecus.org/_data/n_0001/resources/live/SIECUS%20Developments%2
0Summer-Fall%202012.pdf
http://www.advocatesforyouth.org/publications/479?task=view
https://www.guttmacher.org/statecenter/spibs/spib_SE.pdf
Brilleslijper-Kater 2000
Servais
Kellogg 2009
Koller 2000