Adolescent Issues

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Adolescent Issues

• Puberty, Hygiene and Sexuality

Chantal Sicile-Kira Autism One 2009
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Overview of Presentation

• Growth and Development
• Hygiene and Health
• Masturbation
• Modesty, Privacy and Personal Safety
• Sexuality
• Resources for more information

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Top 13 Things Parents Need to Know

• about raising an adolescent on the autism
  spectrum

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• 13. Teenage behavior cannot be blamed on
  mercury
• or the parents genetics.

12. Some teenagers care about smelling good. Or
not.
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.

1. Teenagers do not develop good organizational
   skills or self-care skills through osmosis.

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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.
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• 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

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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

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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

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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

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Other Challenges

• Social expectations increase
• Peer relationships more complex
• More demands on social competency

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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)

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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

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• 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 -
  Aspergers and Sexuality Puberty and
  Beyond

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Now, a fun exercise..

• BSAINXLEATNTEARS

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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)

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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)

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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)

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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.

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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)

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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)

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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

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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

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Task Analysis

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

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• 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

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Masturbation
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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

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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.

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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.

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Modesty, Privacy, Personal Safety, Sexuality
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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

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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).

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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 peoples 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

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• 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

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

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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.

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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

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Teach Interested / Not Interested

• Not Interested
• Looking away
• Turning away
• Moving away
• Looking unhappy
• Having arms folded
• Not responding when
• talked to

• 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

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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

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Remember HOW you say it and teach it,

• is just as important as WHAT you say and teach

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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.

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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.

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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 youths social and emotional (S/E)
  age in comparison with their chronological age
  and intellect?

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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.

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• 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,
  peoples different choices
• sexually transmitted diseases and AIDS

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• Important for teens 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

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Resources

• Aspergers Syndrome and Sexuality From
  Adolescence through Adulthood by Dr. Isabelle
  Henault
• Autism - Aspergers 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 Autism
  by Mary Wrobel
• Handmade Love (men) and Finger Tips (women) books
  and videos at www.diverse-city.com

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Closing Comment

• Jeremy is a complicated young man who people
  cannot judge on appearance. A good metaphor would
  be to describe Jeremy as an artichoke. Each leaf
  on the artichoke has to be taken separately, each
  having its own characteristics. As you go through
  each layer of the leaves, it becomes apparent
  that there might be something inside, something
  worth getting to. It takes time to get there, but
  there is a heart inside, worth the time and the
  effort to expose, as some people say it is the
  prize for the patience of delving through the
  layers. Jeremy is this man.
• Allan Gustafson, teacher

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Chantals Books (pub by Penguin)

• Autism Life Skills From Communication and
  Safety to Self Esteem and More 10 Essential
  Abilities Every Child Deserves and Needs to Learn
• Adolescents on the Autism Spectrum A Parents
  Guide to the Cognitive, Social, Physical, and
  Transition Needs of Teenagers with Autism
  Spectrum Disorders
• Autism Spectrum Disorders The Complete Guide to
  Understanding Autism, Aspergers Syndrome,
  Pervasive Developmental Disorders and other ASDs
  (ASA 2005 Book of the Year)

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Contact Information for Chantal

• www.chantalsicile-kira.com
• Sicilekira_at_mac.com
• The Real World of Autism
• on Autism One Radio http//www.autismone.org/radio
  /
• Webinar moderator on www.momsfightingautism.com