PUBERTY, SEXUALITY, AND BEHAVIOR:

HOW TO GUIDE YOUNG PEOPLE

WITH DISABILITIES
 RESOURCES ON SEXUALITY & SEX EDUCATION
FOR INDIVIDUALS WITH DISABILITIES
(AND THEIR PARENTS/CAREGIVERS)

Books
• Teaching Children with Down Syndrome about Their Bodies,
Boundaries, and Sexuality: A Guide for Parents and Professionals
by Terri Couwenhoven (2007)
• Boyfriends and Girlfriends: A Guide to Dating for People with
Disabilities by Terri Couwenhoven (2015) - Written at a 3rd grade
reading level. Great to read together!
• Sexuality: Your Sons and Daughters with Intellectual Disabilities by
Melberg Schwier and Dave Hingsburger (2000)
• Taking Care of Myself: A Hygiene, Puberty and Personal Curriculum
for Young People with Autism by Mary Wrobel (2003)
• Sexuality and Relationship Education for Children and Adolescents
with Autism-Spectrum Disorders: A Professional’s Guide to
Understanding, Preventing Issues, Supporting Sexuality and
Responding to Inappropriate Behaviors by Davida Hartmann (2014)

Online Resources
• Center for Parent Information & Resources, Sexuality Education for
Students with Disabilities: http://www.parentcenterhub.org/sexed/
• RespectAbility - Sexual Education Resources: http://bit.ly/2K9HPUb
• Autism Speaks - Sexuality Education for Children and Adolescents
with Developmental Disabilities: An Instructional Manual for Parents
or Caregivers of and Individuals with Developmental Disabilities
(Florida Developmental Disabilities Council, Inc.):
http://bit.ly/2wAG00H
• Planned Parenthood - Information and resources for parents:
http://bit.ly/2wqvb10
• Kids Health: www.kidshealth.org
• Inner Learning Online: www.innerbody.com
• SexEd Library by the Sexuality Education and Information Council
of the United States (SIECUS): www.sexedlibrary.org
 Puberty, Behavior &
Sexuality
Tips & Techniques for Support

1
Values Exercise

10/10/2017 2
2
Fact or Fiction?
People with disabilities do not feel the desire to have sex (if disabled
in one way disabled in every way)
People with developmental and physical disabilities are asexual,
childlike, sexually innocent (do not possess maturity to learn about
sexuality)
People with disabilities are sexually impulsive (oversexed and unable
to control their sexual urges) men aggressive & women promiscuous
People with disabilities will not marry or have children so they have
no need to learn about sexuality

10/10/2017 3
3
Sex…shhh
• How much detail must I tell her? Won’t she just get confused?

• Is it really necessary to broach the subject of intercourse since

Johnnie is simply not capable of a close relationship, let alone a
sexual encounter. Besides, he’ll be accompanied all his life by a
support worker, so what chance is there that he will have sex?

• Ronda is non verbal—how can I possibly teach her information

related to relationships, and what is the chance that she would
even understand it?

• Joey has a severe developmental disability and will be child-like

for the rest of his life. He won’t need that type of information.

• Bobbie is still young, there is a lot of time to think about teaching

him this type of information in five years or even later. What has
"sex" or "sexuality" got to do with him now?

4
What is Sexuality?
• Social phenomenon (sociological)
– Friendship
– Warmth
– Approval
– Affection
– Social outlets
– Spiritual
– Hygiene
– dress

• What we feel about ourselves (psychological)

– Whether we like ourselves
– Our understanding of ourselves as men and women (gender
identification)
– What we feel we have to share with others

• Having a physical sexual relationship (biological/physical)

– Physical sensations or drives our bodies experience
– Genital activity is one small part of human sexuality

10/10/2017 6
 Harmful Effects of Repression of
Sexual Expression
• Emotional instability • Develop poor self esteem
• Sex related physical • Poor decision making
problems • Feelings of loneliness
• Anger • Isolation
• Frustration and confusion • At-Risk behavior
• Heightened anxiety • Criminal behavior
• Verbal/physical • Lack of impulse control
aggression • Inferiority complex (being
• Physical discomfort told they are bad/evil)
• Social-sexual misconduct • Depression
• Mental health problems
Adolescent Brain Development
ID/DD WITHOUT ID/DD
BIOLOGICAL

Puberty dev’t the same Puberty dev’t the same

EMOTIONAL/SOCIAL
Mood swings Mood swings
Social-sexual changes Social-sexual changes

DIFFERENCE IS IN COGNITION

More challenging to express feelings More variety of ways to express feelings

Need more concrete language May understand more complex language

10/10/2017 8
What is Puberty

Puberty is the time in life

when a young person starts
to become sexually mature.

10/10/2017 9
Puberty: Physical Development
 FEMALE  MALE
8-11yrs- Usually begins… 9-12 yrs- Usually begins…
11-12yrs- Breast Growth, Height and
Weight Gain. 12-13yrs- Testicles & Scrotum
Begin Enlarging.
12-13yrs- Breast Growth cont.,
Vagina is Enlarging, 13-14yrs- Penis Begins to Grow
Produces Discharge as a in Length, Hair, Height,
Cleansing Process. and Voice Changes.
13-14yrs- Pubic Hair Growth. 14-15yrs- Dev’t continues…
15yrs- Final Stages of Dev’t,
Menstrual Period and 16 yrs- Nearing Adult Appearance
Ovulation Have Usually
Begun.

10/10/2017 10
 Puberty: Social & Emotional
Development.
• During adolescence, you’ll notice changes in the
way your child interacts with family, friends and
peers.

• Every child’s social and emotional development is

different.

• Your child’s development is shaped by your child’s

unique combination of genes, brain development,
environment, experiences with family and friends,
and community and culture.
10/10/2017 11
Puberty: Social & Emotional
Development
• Social changes and emotional changes show
that your child is forming an independent identity
and learning to be an adult.

• Remember that the rate of social and emotional

development varies widely, both for typically
developing children and children with a disability.

10/10/2017 12
Puberty: Social and Emotional
Development
• Have difficulties monitoring and expressing emotions

• Difficulties with peer and social relationships

• Might have difficulties making and keeping friends

• Moodiness, has more arguments with you

• Sees things differently from you

• Antisocial behavior and risk-taking behavior

• Difficulties balancing emotions and behavior

• Wants to spend less time with family

10/10/2017 13
So What May I See?
• Sees things differently from you • Might have difficulties monitoring
and expressing emotions

• Antisocial behavior and risk-taking

behavior
• Difficulties with peer and social
relationships
• Difficulties balancing emotions and
behavior
• Might have difficulties making and
keeping friends
• Wants to spend less time with
family

• Moodiness, has more arguments

with you

10/10/2017 14
10/10/2017 15
Where do I start?
• What do I know?
• What do I still need to know?
• Where can I find information?
• Who else can help me?

• What information does my child already

have?
• What information does my child need?
• How quickly is the information needed?
10/10/2017 16
Where Do You Want Your Child
to Learn About Sexuality?

– Peers
– Media
– School
– Parents
– Internet

10/10/2017 17
Why Social-Sexual Education?
• Decreases the Likelihood of Abuse.
• Combats Myths & Misinformation.
• Promotes Social Skills, Personhood,
Pleasure.
• Reduces Fear, Anxiety, Worry.
• Increases Self-Awareness, Gender Comfort.
• Allows for Maturity, and Healthy
Relationships.

10/10/2017 18
Mild IDD
• Similar to average or normative psychosocial-sexual behavior in
society.

• Explores, adapts, and controls sexual impulses and urges in similar

ways as majority of society.

• Responds to verbal mode of sex education/sex counseling/sex

therapy.

• Capable of developing appropriate adaptive skills with current sex

education/counseling/therapy methods
Moderate IDD
• Secondary sexual characteristics may be delayed.

• Functions more on a primary reward and basic

reinforcement system level.

• May respond to verbal mode of sex

education/counseling to develop more appropriate
adaptive behavior; however, may require techniques of
behavior modification systems to be effective.
Severe/Profound IDD
• Very poor control of sexual • Functions primarily by having
impulses. basic needs met.

• Lack of development of • Predominant reactions are

adaptive psychosocial-sexual impulsive.
behavior.
• Limited ability to predict or
• Problems comprehending foresee consequences of
societal rules, especially sensual/sexual behavior.
private vs public, and
developing adaptive behaviors • Pleasure seeking frequently in
in these areas. self-stimulating.
• The technique of behavior • Often masturbates excessively
modification may be most or in a harmful way
effective in affecting change in unknowingly.
this group
CHALLENGES
• People with disabilities may have:
– Difficulty learning
– Limited genital and other tactile sensations
– Communication problems
– Uncertainty about their sexual function and fertility status

• Issues that may hinder development of healthy body

image and self-concept include:
– Use of braces, crutches, wheelchair
– Bladder and bowl management routines
– Physical differences from peers (atrophy)
– Diminished gender role expectations from society
– Mistrust of own body

10/10/2017 22
Socialization
• Children with disabilities have:
– -Fewer opportunities than their peers to observe, develop and
engage in appropriate social and sexual behavior

– -Fewer opportunities to acquire information from peers

• -Often held back by social isolation as well as functional

limitations .

• By fostering development of social skills, parents and

educators can provide opportunities to learn about the
social contexts of sexuality and the responsibilities of
exploring and experiencing ones own sexuality.

23
Socialization
• National Dissemination Center for Children with
Disabilities (NICHCY) recommends:

– Helping children develop hobbies and pursue

interests or recreational activities in the community
and after school

– Children with disabilities should engage in social

opportunities and to grow and learn from social errors

– Extra-curricular activities present opportunities for

friendship based on commonality of interests and
provide opportunities to develop competence and
self-esteem
Why “Behaviors”?
• Inappropriate sexual behavior by individuals with disabilities can stem from:
– Lack of opportunity for appropriate sexual expression
– Ignorance of what is considered appropriate behavior
– Poor social education

• Behavior that leads teens with disabilities into trouble as perpetrators may
not necessarily be atypical for adolescents but it also involves either bad
judgment on the part of the person with a disability or a hasty reaction on
part of parents, school, employer.

• Opportunities for privacy are less frequent for people with special needs

• Comprehensive sexuality education often withheld from this population

• Not surprising that teens with disabilities display sexuality inappropriately

• Whether sexual behavior is considered appropriate depends on the location

in which the behavior takes place – need to look at problematic behavior in
its context
10/10/2017 25
Issues
• Problems most frequently mentioned by parents
regarding sexuality education are:

– Inability to answer questions

– Uncertain of what children know or should know

– Confusion, anxiety and ambivalent attitudes toward

sexuality of their children

– Equate learning with intentions to perform sexual

activities

10/10/2017 26
Parents as Sex Educators
• Parents of children with developmental disabilities tend
to be uncertain about the appropriate management of
their child’s sexual development

• Concerned about
– Overt signs of sexuality
– Physical development during puberty
– Genital hygiene
– Fears of unwanted pregnancy
– STI’s
– Embarrassing or hurtful situations
– Fear that their child will be unable to express sexual impulses
appropriately
– Targets of sexual abuse or exploitation

10/10/2017 27
 Parents are the First Sex
Educators
• Parents need to help their child develop life skills

• Without appropriate social skills young people

may have difficulty making and keeping friends
and may feel lonely and different.

• Without important sexual health knowledge,

young people may make unwise decisions and
or take sexual health risks.

10/10/2017 28
Self-touch
• Sexual self-stimulation or masturbation is normal, natural
and non-harmful behavior throughout the life cycle

• Self-stimulation can be a way of learning to be more

comfortable with and/or enjoying one’s sexuality by
getting to know one’s body

• Self-stimulation is a private behavior and inappropriate in

public places

10/10/2017 29
Public vs. Private
• People with disabilities are capable of learning how to act appropriately in
public and private places
– Many inappropriate actions and activities reflect confusion, lack of
awareness and limited judgment

• Many social problems indicate a limited understanding about public and

private places, private parts of the anatomy and public and private
behaviors.
– Discouraged from public engaging in activities such as:
• Exposing private parts of the anatomy by undressing, pulling down
or lifting up clothing
• Scratching or touching genitals
• Fixing or adjusting underclothing
• Self-stimulation

10/10/2017 30
General Guidelines for Parents
• Be clear when discussing relationships (mother father
vs, Paul and Carol)

• Use teachable moments that arise in daily life (e.g.,

friends pregnancy, marriage, adoption)

• Be honest when children ask you questions

• Always acknowledge and value your child’s feelings and
experience.

• Be willing to repeat information over time – don’t expect

your child to remember everything you said
10/10/2017 31
General Guidelines for Parents
• Be able to talk about and ask questions about sexuality
related issues

• Prepare for puberty (parent & pre-adolescent)

– Male vs. female body parts (correct names, changes)
– Menstruation
– Care of genitals & general body care

• Use pictures in communication/teaching

• Seek out/ask for support

10/10/2017 32
General Guidelines for Parents
• Be ready to assert your personal privacy boundaries

• Use accurate language for body parts and bodily

functions.
– Children with accurate language are more likely to
report abuse if it occurs

10/10/2017 33
It’s Not Just About Sex!
• Social Concepts (Friendships, Social Skills) are as Important as
Sexual Concepts (Masturbation, Pregnancy Prevention).

• Be Proactive, Not Reactive: Teach the Concepts Before the Issue

Presents Itself!

• Stay Neutral; Avoid Judgment.

• Model Appropriate Boundaries by choosing Private Locations to

Discuss Topics and/or Issues.

• Use Repetition, Especially with Key Concepts.

• Teach Complex Tasks in Simpler, Individual Steps, and In

Chronological Order.

10/10/2017 34
So… What to Teach?
• Private vs. Public
• Boundaries
• Good touch/bad touch
• Hidden Social Etiquette
• Teach concretely, especially abstract
concepts.
• Time and Place
• Social-Sexual Education (curriculum)

10/10/2017 35
What to Teach?
• Body Image
• Self-Esteem
• Being Healthy
• Hygiene
• Puberty
• Social Skills
• Private vs. Public
• Sexual Orientation
• Menstruation
• Abuse Prevention
• Masturbation
• Relationships & Boundaries
• STDs, Birth Control, Pregnancy
10/10/2017 36
 Parents as the first Social
Sexual Educators
• Normalize the Discussion of Sexuality!

• Use concrete language at their cognitive level & pictures.

• Making it Taboo Encourages Secrecy and Increases Vulnerability.

• You may need to initiate the conversation!

• Be honest and give correct information.

• Respond to All Sexual Issues Non-Judgmentally.

• If Necessary, Refer Loved Ones for Additional Services related to
Sexuality, such as Sexuality Training, Psychotherapy, or Consent
Determination.
10/10/2017 37
Social Stories
 Goals of Sex Education for People with Disabilities
1. To help people with disabilities communicate about sexuality with others without
unnecessary guilt or embarrassment in relations to their sexual orientation, their
sexual interests and/or activities.

2. To provide accurate sexuality information at cognitively appropriate levels using

multi-sensory modes of communication such as pictures, models, role plays, videos,
etc.

3. To teach awareness about the body which allows people with disabilities to see
themselves to be like others. This generates self-confidence which in turn, will
heighten self-esteem.

4. To help make it possible for people with disabilities to enjoy the company of
friends by acquiring social skills; and developing positive relationship with others

5. To actively involve the student in the learning process.

45
 Goals of Sex Education for People with Disabilities
6. To help people learn the responsibilities of being a sexual person including
customary social patterns.

7. To train people so they will avoid situations where they could be sexually
exploited, harmed or abused.

8. To teach people to avoid unsafe or illegal sexual behavior.

9. To help prevent the overprotection that arises from fear of procreation by

offering people information about, and help with, birth control.

10. To teach skills that will enable individuals to make responsible choices and deal
more effectively with the challenges they may encounter throughout their lives.

46
 Education and training are
the key to promoting healthy
and mutually respectful
behavior… regardless of
disability.

10/10/2017 47
47
Reference
1. Byers, E.S., Sears, H.A., & Weaver, A.D. (2008). Parents’ reports of sexual communication with children in kindergarten to
grade 8. Journal of Marriage and Family, 10(February), 86-96.

2. Wilson, E.K., Dalberth, B.T., Koo, H.P., & Gard, J.C. (2010). Parents’ perspectives on talking to preteen age children about
sex. Perspectives on Sexual and Reproductive Health, 42(1), 56-63.

3. SIECCAN. (2010). Sexual Education in Schools: Questions & Answers, 3rd Ed.

4. SIECCAN. (2010). Sexual Education in Schools: Questions & Answers, 3rd Ed.

5. Alberta Education (2002). Health and Life Skills, Program of Studies.

6. Alberta Health Services, Calgary Zone, Sexual & Repoductive Health. (2010). Get the facts on…teen pregnancy, sexually
transmitted infections (STI), HIV & AIDS, and teen sexuality. Calgary: Author.

7. SIECCAN. (2010). Sexual Education in Schools: Questions & Answers, 3rd Ed.

8. SIECCAN. (2010). Sexual Education in Schools: Questions & Answers, 3rd Ed.

9. Public Health Agency of Canada. (2003). Canadian Guidelines for Sexual Health Education. Ottawa.

* 49
 Reference
• 6. Alberta Health Services, Calgary Zone, Sexual & Repoductive Health. (2010).
Get the facts on…teen pregnancy, sexually transmitted infections (STI), HIV &
AIDS, and teen sexuality. Calgary: Author.

• 7. SIECCAN. (2010). Sexual Education in Schools: Questions & Answers, 3rd Ed.

• 8. SIECCAN. (2010). Sexual Education in Schools: Questions & Answers, 3rd Ed.

• 9. Public Health Agency of Canada. (2003). Canadian Guidelines for Sexual

Health Education. Ottawa.

50
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