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Help…They’re Growing Up!
 Puberty and Youth with Disabilities

Chris Filler  

Coordinator Lifespan Transition Center at O

The Myth: 
 “People with disabilities are not sexual”

All people are sexual beings, regardle of whether or not they live with physical, mental, or emotional disabilities

Frequent Ques/ons  

s the  development  the  same  for  people   with  disabili4es?   Are  the  signs  the  same?   Will  they  understand  their  bodies  changin Will  they  be  able  to  take  care  of   themselves?   Can  they  learn  and  accept  these   developments  like  everyone  else?   How  can  I  help?  

Fears? Concerns? Issues to Overcome?

“I don’t know how to teach about all this…. what to sa or where to begin” “How do I teach my child about the changes in their body?” “Tantrums and other behaviors were so much easier to handle. Rubbing and touching and wanting to talk about sex is something most people are afraid to deal with” “I am afraid that addressing sex, sexuality, and all the ssues surrounding this encourage him/her to act out sexually” “I am afraid for his/her safety. He/she is so vulnerable” “This is hard enough for a family that does not have the

So let’s  start  with  what  is   “Normal”     What  is  “Typical”?  

Card Sort  Ac/vity  

“What is  Normal?”    

Make 2  or  maybe  3  piles:  

1. Normal/Typical   2.  Abnormal  /  Concerning     and  maybe  third  if  you  need  it….   3.  It  Depends….Not  Sure  

Quick Review    

olescence meline emale

berty arrives for s: ween and 13 years old erage 11 years)


olescence meline: Male

erty arrives oys: ween 9 and ears old erage 12


Normal Sexual  Behavior  in  Children

Asking sexual questions about •  •  •  •  •  • 

Bodies (theirs and others) Conception/reproduction Birth Arousal Marriage Sex

Exploring gender roles and behaviors Looking at their bodies and the bodies of others

Normal Sexual  Behavior  in  Children  

ouching own genitals in “exploration” oung children may mutually touch similar aged friends or cousins will decrease if told to stop cting out sexual behaviors with dolls, ets, and stuffed animals in the context play NOT explicit elling sexual jokes and using sexual ords/ “potty words with peers

Normal Sexual  Behavior  in  Children and  Adolescents  

ate childhood/early dolescence, begin having omantic interests Dating relationships exual fantasies Adult-like sexual activity may begin in dolescence

About 50% of high school aged youth are sexually ac

Problema/c Behaviors   -­‐  Could  Indicate  Concern   -­‐  Need  to  Inves/gate  

Problema/c Sexual  Behavior  

haviors may  be  Problema4c  if:   Cause  complaints  or  nega4vely  effect  othe people  or  self  

nterfere with  social                                                                               or  family  rela4onships     and  daily  or  normal                                                                                   func4oning  

Problema/c Sexual  Behavior  

Out of  balance  with  other   aspects  of  the  individual s  life   and  interests  

Con4nue in  spite  of  consistent   and  clear  requests  to  stop  

Done in  inappropriate  places,   despite  being  taught   otherwise  

Problema/c Behaviors  

Unable to  stop  him/herself   from  engaging  in  the  behaviors   (ex:  masturba4on)   Behaviors  that  are  associated   with  aggression  or  expressions   of  anger     Fear,  anxiety,  deep  shame,  or   ntense  guilt  is  associated  with   behaviors  

Problema/c Behaviors   Be  Concerned!  

Behaviors causing  physical,  emo4onal   discomfort  (self  or  others)   Sexual  behavior  toward  much                         younger  children   Forcing  others  to  do  sexual  acts   Tricking/bribing  others  into                                       sexual  acts  

Seek professional  help!  

Adult Development  and  those  with     Developmental  Disabili/es:  

Considera:ons for     Educa:on  and  Support  


neven ical  and   ocial-­‐ o4onal   lopment  

Limited Life   Experiences  

Limited Opportuni4es   with  Peers  

Lack So Awaren Soci Compet

ning and   munica4o

Repe44ve and   Persevera4ve  

Need for   Ongoing  

Poten4 Poor B

Uneven Physical and Social – Emotional Development

ronological age (actual )

may not be be the me as

maturational or otional age

“My birthday and bod am a Teenager”


“I am still like a little k when it comes to frien relationships”

Considerations for those with Developmental Disabilitie

Limited Life Experiences

May not have equal ccess to typical life xperiences during evelopmental periods

nsiderations for those with Developmental Disabil

Limited Opportunities with Peers

May have limited opportunities with pee due to the complexity and difficulty to organi plan, assist and implement the activitie

nsiderations for those with Developmental Disabil

Lack Social Awareness (Social Competency)

•  Lack the Social Skills •  Difficulty reading social situations and relationsh •  Unable to predict consequences / outcom in social scenarios

“normal” is  defined  as  what  is  excepted…then  if  you   don’t  know  what  is  expected,  you  could  be  making   mistakes  and  never  realize  it!  

nsiderations for those with Developmental Disabil

arning and Communication Challenge

Difficulty with abstract concepts

•  Specific information •  Multiple experiences/examples to understand concept

•  Information broken down into small “chunks” •  Visual vs. Auditory Learner

nsiderations for those with Developmental Disabil

endency for Repetitive/ Perseverativ Behaviors

Lack of diverse skills Poor impulse control

Myth: People with disabilities canno control their sexuality

People with DD are ‘oversexed’ and have ‘uncontrollable urges’

angerous myth!  

May cause  people  to  avoid  or  limit  sex   educaGon  for  youth  with  disabiliGes  

Considerations for those with Developmental Disabilitie

eed for  Ongoing  Assistance/Supervis

Mobility limitations may require a great deal of physical assistance resulting in poor awareness of private body areas

Need for  Ongoing  Assistance/Supervision

Personal hygiene, daily living nd safety needs require physical assistance/close upervision May cause confusion about exual and non sexual part of he body…or what is “private”

What they do in public is not different than what others do in private. It is just that hey do not know the appropriate time or place!�

Considerations for those with Developmental Disabilitie

Potential for Poor Body Image

•  May be uncertain about own sexual function •  Poor body image can limit natur sexual development

Marvin and  Jack  Video  

Teaching is  the  K

When What   How    

“People at  the  greatest  risk  for  exploita: are  those  who  are  insulated,  protected,  o sheltered  from  what  could  happen.     Skill  development  and  informa:on  are powerful  tools.”  

Terri Couwenhoven, Mom  and  Sexuality  Edu

When to  Teach?  

Throughout a person s life Begin in early childhood Before and during puberty When a child/youth expresses nterest or curiosity BUT….don t always wait for the person to ask! Look for opportunities

What and  How   To  Teach   Tips, Resources and Supports

Right to Information

exuality is a fundamental part of being hum ne that is worthy of dignity and respect� a upports the rights of all people to ha accurate information, comprehensive educati bout sexuality and sexual health services�.

SIECUS (Sexuality Information and Education Council of the United S

of Meaningful Sexuality Education

Adult Self-­‐Care   Anatomy  and  Physiology   Empowerment   RelaGonships   Social  Competency   Social  Opportunity  


Adap Sexuality Meets Intellectual Disability: What Every Parent Shoul by Leslie Wal

Six Key Components of Meaningful Sexuality Education

. Adult Self-­‐Care   Anatomy  and  Physiology   Empowerment   RelaGonships   Social  Competency   Social  Opportunity  

Sexuality Meets Intellectual Disability:

      What  Every

Adap Parent Shoul by Leslie Wal

. Adult Self-Care

•  Grooming, toileting, dressing, etc. •  Accomplishing age-appropriate hygiene and personal care

•  Awareness of what is expected for the specific environment or situation 

Start Early and Prepare!

Menstruation can be upsetting if not prepared lood is typically associated with a problem

Males need information about cause and ormalcy of erections and what to do For example, go to a nearby restroom to readjus the penis in private

Young Women with DD

ehavior problems may increase due to hormonal hanges related to the menstrual cycle

elf-injury may increase during period

nterventions that may help: exercise medication diet massage, hot water bottles teaching communication nd choice-making behaviors

Birth Control,  Pregnancy  and  Protec/on  

f sexually active (or wants to be) need to discuss: Safety Prevention Pregnancy Medications and the Pill

eaching Independence in ersonal Care

At ANY level, encourage their childr to be responsible for their personal care and hygiene

When children need help, ask their permission

Six Key Components of Meaningful Sexuality Education

Adult Self-­‐Care  

.  Anatomy and  Physiology   Empowerment   RelaGonships   Social  Competency   Social  Opportunity  



Adap Sexuality Meets Intellectual Disability: What Every Parent Shoul by Leslie Wal

. Anatomy and Physiology

Biological and physical aspects of sexual body functions and names

Distinguishing sexual anatomy from other body parts

Point to  the  picture  that  m each  word:   1.  Head    2.  Leg    3.  Stomach 5.  Breast  6.  Penis  7.  Tes4 8.  Pubic  Area    

each the dierence between public and private

Consistency among caregivers and routine Encourage children to undress/dress in bedroom or bathroom with the door closed Be a Model: Knock on child’s door before entering Pull down shade before child undresses

www.sexualhealth pubertyandsexualit k.pdf aging/IDD/ docs.htm Â

Teach the Language


Teaching both formal and informal words or sexual anatomy may be needed When and with whom each is appropria

Teach that sexual words are not to be us n anger Â


Self-­‐touch, or  masturba4on  should   be  discussed  as  a  natural  and   healthy  way  to  explore  and   express  sexuality  in  a  private  place  

May try  to  masturbate  in  public   place  because  of  the  visual   s4mula4on   May  need  pictures    

Six Key Components of Meaningful Sexuality Education

Adult Self-­‐Care   Anatomy  and  Physiology  

.  Empowerment RelaGonships   Social  Competency   Social  Opportunity  


Adap Sexuality Meets Intellectual Disability: What Every Parent Shoul by Leslie Wal

Empowerment Self-determination and self-valuing Awareness of the nfluence that one has to determine life choices

courage Self-Determination

Opportunities for making decisions is part of maturing what to have for lunch what to wear who to socialize with

Opportunities to express “NO� and experien the positive and negative results A choice that needs to be respected

Six Key Components of Meaningful Sexuality Education

Adult Self-­‐Care   Anatomy  and  Physiology   Empowerment  

. Rela:onships Social  Competency   Social  Opportunity  



Adap Sexuality Meets Intellectual Disability: What Every Parent Shoul by Leslie Wal


Differentiating the social boundaries of relationships

Understanding the requirement to adjust his or her behavior : Touch (Space) Talk (Language and Intent) Trust (How much trust is safe?)

Public and  Private   Private vs. Public is an important concept to master! An abstract concept so it may require concrete examples and practice

Rela/onship “Boundary”  Skills      

Appropriate Affection With whom and where EXAMPLE: Explain why I hug and whom I hug s as not to suggest it is OK to hug anybody for an reason

Use social situations as examples To give a context for the information presented

Teach the right to say “NO”!

Six Key Components of Meaningful Sexuality Education

Adult Self-­‐Care   Anatomy  and  Physiology   Empowerment   RelaGonships  

. Social Competency   Social  Opportunity  


Adap Sexuality Meets Intellectual Disability: What Every Parent Shoul by Leslie Wal

Social Competency

“Manners/ Politeness� Expressing affection Welcoming or rejecting affection 

e a “Social Instructor�

Teach specific skills, step by step Choose social outings that allow interacti with peers that demonstrate desired skills behaviors Opportunities to practice interaction with members of the opposite gender

Social Narratives
 A Teaching Tool

My name is James. Sometimes I think bout sex and private areas. It’s okay hink about sex and private areas. I w ry to keep my thoughts to myself. Th is very important. I may ask mom or dad a question if I’m confused.

Social Narratives

My name is Amanda. I am 13. My body is rowing and changing. My mom knows abo growing up. Sometimes, girls get breasts when they are 13. Soon, I will have breas too. Most women wear bras to hold and cover their breasts. This is a good thing to o. I will wear a bra. If I forget to wear a b my mom may remind me before I go to chool. Wearing a bra is part of growing u

Social Narrative

s OK to have an erection or hard-on whi at school. When this happens I will ask th teacher to be excused to go to the athroom. I will not talk to others about m erection. I know that this is a private thin nd it is natural. Erections happen to all bo at some time.

Social Narrative

My body belongs to me and some areas are ot to be exposed in public. These areas a called private parts and include my genital and my breasts. It is OK to take off all my lothes when I am on my own at home an not seen by anyone, for example when preparing to take a bath. It is also OK to show my private parts to a doctor in the doctor’s office for an examination.

Make abstract concepts concrete


With Examples

o Provide Guidelines, Boundaries, Direction

Available through  OCALI library  

Syndrome Trouble-­‐Shoot  Life's  Challenges         by  Josie  and  Damian  Santo

NG -­‐  When  one  person's  lips  touch  another  person's  li g  is  something  people  like  to  do  when  they  have  feelin other.   It   is   basically   when   people   press   their   lips   tog can   be   done   in   kissing,   such   as   the   use   of   tongue gs  that  are  present  when  people  kiss  can  be  different It  can  be  a  love  feeling  (see  Love),  or  it  can  be  a  feel which   is   more   sexual   than   love.   I   suggest   that   if   you   w girl,  you  prepare  yourself  and  go  over  the  situa/on  fi mind.  If  you  and  the  person  you  want  to  kiss  are  toget ng   couple,   then   it   is   probably   appropriate.   If   you   ar her,  it  is  inappropriate  to  kiss  if  the  person  doesn't  fe way.  You  can  never  just  go  up  to  someone  and  kiss  w ng,  because  not  only  is  that  scary  to  the  person  you  k so  socially  unacceptable.  In  fact,  it  can  be  illegal  beca  seen  as  harassment.”  

e Law!� Kari Dunn Buron

Video Instruc/on  

Use of  video  can  be  helpful  to  show   appropriate  ways  to  act  and  react   Can  be  “home  made”  video   Can  be  produced  video  products  

Differentiate Thoughts From Behaviors

You “own” your thoughts and that is OK However, acting on those thoughts may n be OK Teach: Some things stay in your head and should not be said or acted on!

Julie‌you are HOT

Julie, you look really nice today!

What a @%&^$#! stupid question!

I gotta go Dudes!

Six Key Components of Meaningful Sexuality Education

Adult Self-­‐Care   Anatomy  and  Physiology   Empowerment   RelaGonships   Social  Competency  

. Social Opportunity  

Adap Sexuality Meets Intellectual Disability: What Every Parent Shoul by Leslie Wal

6. Social Opportunity •  Availability of friendships, recreation and community participation •  Weigh risks and benefits of that participation •  Look for “Right Fit” •  Social competency, degree of independence, support, benefit

Social Opportunity: e Right Fit

Social Competency




A Few  Final  Tips  

Assess your own aitudes and beliefs

Recognize children as sexual beings with emotions/desires

Consider how you want your children’s sexuality education to be similar or different from your own

Assess your own aitudes and belief

Think about behaviors that might send messages contradictory to those you are trying to teach

f uncomfortable talking about sexuality/ puberty, consult family planning and disabi agencies for guidance and support

www.teachingsexua Sexuality_Develop ntal_Disability.p

Know When to Get Help

When behaviors  of  concern  do  not   decrease,  become  increasingly  problema4 or  are  abusive  or  harmful,  seek  profession help  

Who to  Consider  

School Parent  Mentors   Teachers  

Department of   Developmental   Disability  (County   Board)   Doctor   Therapist  (OT/PT/SLP/ Psychologist)  

•  Parent Support  Grou •  Church/Faith  Based   Organiza4on   •  Community   Organiza4ons  such  a

•  JFSA (Cleveland  Area)   •  Rotary  Camp   •  Child  Guidance  

•  Other?

Review of  Today  

What’s “Normal”?   mplica4ons  for  those  with  DD     Related  to  physical,  safety,  developmental   limita4ons   What  can  result   What  to  Teach   Six  areas   Tips  and  Resources   Where  to  start  

While not all individuals choose to be xually active, all individuals are sexual ings.� xpressions of sexuality include, but are no mited to, socialization, activities of endship, boundaries in relationships, body wareness, human connectedness, genital eractions, assertiveness, self image, selfre, decision making, and personal code of hics.�


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