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Adolescent Issues

Puberty, Hygiene and


Sexuality
Chantal Sicile-Kira
Autism One 2009
Overview of
Presentation
Growth and Development
Hygiene and Health
Masturbation
Modesty, Privacy and Personal
Safety
Sexuality
Resources for more
information
Top 13 Things Parents
Need to Know
about raising an
adolescent on the autism
spectrum
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
9. Teenagers learn self esteem at
yours.
home and school. Or not.
1.Teenagers do not develop good
organizational skills or self-care
skills through osmosis.
7. Moodiness and raging hormones is a
normal
teenage thing. is a needed life
6. Self-regulation
skill not
practiced by
5. Noncompliance is teenagers.
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.
“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.”
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
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
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
Other Challenges
Social expectations increase
Peer relationships more complex
More demands on social competency
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)
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…
…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 - Asperger’s and Sexuality:


Puberty and Beyond
Now, a fun exercise…..

BSAINXLEATNTEARS
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)
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)
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)
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.
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’)
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’)
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
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
Task Analysis
Note prompt levels:
I - independent
V- verbal
G - gestural
M- model
Pos - positional
Pph - partial physical
Fph -full physical
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
Masturbation
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
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.
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.
Modesty, Privacy,
Personal Safety, Sexuality
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
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).
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 people’s ‘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
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
Wave Circle Stranger Circle
Handshake Circle
Far-Away Hug Circle
Hug Circle

Private Circle
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
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.
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
Teach Interested / Not Interested

Not Interested
Interested
Looking away
Giving strong eye contact
Turning away
Leaning forward to hear
what is said Moving away
Smiling Looking unhappy
‘Flipping’ or touching hair Having arms folded
Laughing at your jokes Not responding when
Other person initiating talked to
conversation
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
Remember :
HOW you say it and teach it,
is just as important as
WHAT you say and teach
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.
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.
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 youth’s social and emotional (S/E)
age in comparison with their chronological age
and intellect?
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.
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, people’s different choices
sexually transmitted diseases and AIDS
Important for teen’s 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
Resources
Asperger’s Syndrome and Sexuality:
From Adolescence through Adulthood
by Dr. Isabelle Henault
Autism - Asperger’s 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
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
Chantal’s 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 Parent’s Guide to
the Cognitive, Social, Physical, and Transition Needs of
Teenagers with Autism Spectrum Disorders
Autism Spectrum Disorders: The Complete Guide to
Understanding Autism, Asperger’s Syndrome, Pervasive
Developmental Disorders and other ASDs (ASA 2005 Book
of the Year)
Contact Information for Chantal
www.chantalsicile-kira.com

Sicilekira@mac.com

“The Real World of Autism”


on Autism One Radio http://www.autismone.org/radio/
Webinar moderator on www.momsfightingautism.com

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