Autism Life Skills

Ten Essential Abilities Your Child

with Autism Needs to Learn

Chantal Sicile-Kira July 2010

 My Background
 BA Social Ecology - University of California, Irvine
 Fairview State Hospital
 Orange County Regional Center
 Jeremy and Rebecca born in France – involved
again in the world of autism
 Move to England (started home program)
 Move to San Diego (continue to advocate)
 Volunteer on non-profits, CAN, ASA, HALO, local
CAC NCCSE
 Started writing books, presenting nationally
 Webinars, mentoring
 Taskforce on Transitional Services &
Supports reporting to the California
Legislative Blue Ribbon Commission on
Autism
 Co-Chair, South Counties Autism Regional
Taskforce of the California Senate Select
Committee on Autism & Related Disorders
 Sensory Processing

“ Say my brain has only 100 Sensory

Processing Units. If it takes 95 units to
decipher the sounds of a conversation,
translate the conversational signals such as
innuendos, pick up the contextual clues that
impart social meaning, and modulate my
voice, I have just five units remaining for
other sensory sources. Since looking at
someone’s face, decoding facial
expressions,…
…and coping with the pain of the fluorescent
lights requires (hypothetically) at least 75
units, in this case I would not have enough
Sensory Processing Units to look at the
other person, or even open my eyes, while
we conversed. This helps explain why most
autistic people are unable to look at
someone in the eyes while also talking, a
characteristic behavior of autism spectrum
disorders.”
Zosia Zaks, Life and Love
 Sensory Processing
“I prefer spending quiet time alone or with
no more than a few other people. The more
people, the more noise and movement
therefore the more overloaded and anxious I
get. My hearing is such that when more than
one sound or voice is occurring
simultaneously the sounds are processed in
my brain into one noise.”

Brian King, MSW

 Sensory Processing
 Making sense of the world
 Most frustrating area they struggle with
 Impacted every aspect of their lives
 If not in synch, they acquire a distorted view
of the world and of themselves
 Connection between processing (ie auditory,
visual, kinesthetic) and learning style
 Most helpful strategy : knowing in advance
what was going to happen next to anticipate
and prepare for sensory aspects of their day.
 Important to use: Schedules
& Change in Routine Reminder

 ‘Change in Routine’ reminder:

– Sign on desk, on Daily Schedule or Planner, or
card in pocket that reminds students that
change can happen.
 ‘Change in Routine’ Card:
– Given to to student to signal change to him in
schedule or environment
 Example:
Change of Routine Card
Please Note:

History class start time will be changed on

Tuesday April 12 because it is a Late Start
day

History class on Tuesday April 12 will start at

12:40pm
 Communication
What’s Manageable in Language
“It isn’t the complexity of language, the array of
suffixes, or the proliferation of rules for making
plurals that causes difficulty for autistic individuals.
In fact, the complexity probably helps. The more
rules and structures there are, the less an autistic
individual has to rely on intuition and context to get
the meaning of someone else’s utterance. One
meaning, one word would be the ideal. That’s
manageable.”
manageable
Kamran Nazeer, Send In the Idiots
 Communication

“ While I was in high school typing allowed me

to write my own social stories and
participate in my own behavior plans. Even
after I graduated and started college and
moved into my own home, I still had
behaviors and needed to tell my support
staff how they could help me. As I spend
more and more time engaged in academics
and typing almost whole days I find myself
better able to control my behavior….
… I really believe that my brain has been
rewired and the autistic part that was
responsible for all that awful behavior is now
subservient to the awesome intellectual part
that enables me to stop a behavior when I
feel it coming. I am also not such an
emotional mess. I am able to cope with
changes and new situations much better.”

Sue Rubin, www.sue-rubin.org

(writer / star of Autism is a World)
 Communication
 Behavior is a form of communication
 If a person does not have an appropriate
communication system available, he/she
learns to communicate through
inappropriate behaviors
 As communication skills increase,
inappropriate behaviors decrease - focus
on teaching communication, not just
decreasing behaviors
 Communication

 For the more able, more subtle difficulties

but just as important
 Teach ‘hidden curriculum’ - the rules that we
all know but were never taught (like a
traveler in a new country who has learned
the language, but not the social rules of the
new country)
 Having access to group of non-autistic
peers over time helpful
 Safety

“I was screaming inside,

but no one could hear me.”

Jeremy Sicile-Kira, student

 Safety (Bullying)
“Aside from my own internalized shame,
many teachers helped to reinforce that
shame, as well. For example, when I was in
high school, I had a very uneven motor skill
profile. As the number one singles player on
my high school varsity tennis team, I
obviously had very good gross motor skills.
Yet during high school, I could not tie my
own shoes, which meant that my fine motor
skills were significantly behind…
…. My teachers could not understand how
such a fine tennis player could not even tie
his own shoes. Using a neurotypical
paradigm to explain this bizarre
discrepancy, the theory was that I simply
wasn’t trying hard enough. Because of the
faulty assumptions that several of my
teachers made, they needlessly criticized
me when I genuinely was trying. This in turn
lowered my self-esteem, greatly.’
Nick Dubin, author
 Safety
 No notion of safety when little (sensory processing
issues)
 Felt terrified during school years
 Verbal and physical bullying
 Sometimes teacher’s behaviors contributed directly
or indirectly
 Physical and sexual abuse - sometimes not
knowing at the time it was abuse
 Most helpful: school environment that strictly
enforces a ‘no bullying’ policy; and teaching the
ASD students ‘Hidden Curriculum’
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.
 Self Esteem
“ As I sit here now and write about those early years,
I’m amazed to think how much my parents did for
me even as they must have gotten so little back at
the time. Hearing my parents’ recollections of my
earliest years has been a magical experience for
me; to see for myself in hindsight the extent of
their role in making me the person I am today. In
spite of all my many problems, they loved me
unconditionally and devoted themselves to helping
me – little by little, day by day. They are my
heroes.”
Daniel Tammet Born on a Blue Day
 Self Esteem
 Confidence in one’s abilities is a necessary
precursor to a happy adult life
 What people hear said about them is impactful.
 Positive attitude on ASD/disability from parents/
teachers/ caregivers is important
 Most important factors:
– parents / caretakers who were accepting of their
child, yet expected them to reach their potential and
sought out ways to do that;
– relationships with a neutral adult;
– relationships with autistic and non-autistic peers.
 Pursing Interests
“Woodstock is famous for its rock history. I
feel lucky to live there because music, and
especially music of the 1960s, 1970s and
1980s, is one of my special interests… My
other special interest is in standup comedy
and performance. I used to spend a lot of
time memorizing and telling jokes from joke
books. Now I write my own original material
and I’m taking acting classes at the Stella
Adler Studio’s Teen Conservatory in New
York City.”
Elijah Wapner, student
 Pursuing Interests
 The all important skill of having fun
 Most activities are purpose or interest
-driven
 Passionate about pursuing interests
 The notion that you do something just to
pass the time of day or because it feels
good is not an obvious one to them
 Most helpful: use these interests and
passions to teach academic subjects at
school, and to translate into a job/career
 Pursuing Interests
please read this with a sense of humor
Behavior Future Career
 Lines up toys (professional organizer)
 Spins tops (physics professor)
 Spins all objects ( physics researcher)
 Smears poop (multi-media artist )
 Takes clothes off, will not leave them on
(director of a clothing-optional community)
 Hits people (boxer)
 Attacks people (pro-wrestler)
 Twirls piece of string for hours (wind velocity
researcher)
 Dumps bags of sugar and flour
(competitor in adult Sandcastle competition)
 Chews and swallows non-food items (pica)
(food taster for a Head of State)
 Runs around the house, will not sit down
(short distance runner)
 Tries to escape the house or other
enclosed area (cross-country runner)
 Gets up on the furniture, and jumps off
(parachutist or bungee jumper)
 Takes things apart but does not put them
together again (neurotypical husband)
 Self Regulation
“I had to learn that unless I was doing
something harmful to me or other people,
then anything my body chose to do in
response to overload was probably what
needed to happen, and that in fact if I let go
of trying to keep it still in one spot, then it
often would move around in a way that
would drastically reduce my overload and
increase my comprehension level…
“….The time that I really started falling apart was a
time when I had no breaks between being
expected to process a lot of new information. I
learned many years later that those breaks are as
important to autistic people as sleep is to all
people. We start going crazy without them just
like everyone does without sleep. I think because
we're usually taking in more information we need
time for the less conscious parts of our brain to
filter through it.”
Amanda Baggs, blogger and autism activist
 Self Regulation
“ Counseling has been very useful. I started out doing
more play therapy than talking at the beginning of 5 th
grade when I was 11. Now I spend the whole hour
talking and I always have a lot to discuss. The
reason I find it helpful is because it helps me to talk
about things so that I feel more confident about
myself as a teenager. I just wish more teenagers
could have counseling because it’s also common for
them to feel like they’re struggling in life.I am in the
process of learning some skills in how to self-soothe.”
Jordan Ackerson, student
 Self Regulation
 Necessary for taking part in the community
 Need to learn how to handle sensory and
emotional overload
 Starts by learning about emotions and sensory
overload
 Learn to identify “triggers”
 What to do to prevent overload
 What to do if overload happens
 Starts, when little, learning to ask for breaks
 When older, giving them responsibility to schedule
own breaks
Teach Concept of ‘Waiting’
 Important life skill for home, school, community
 Make an icon with figure in chair and clock, with a
place (velcro) for putting icon of requested item, and
have timer and item close by
 When child asks for item out of reach show icon, say
“we are waiting” and set item for xx number of
seconds or minutes.
 When timer rings, give requested item.
 Add more and more time until concept understood
Teaching “Waiting”
 Teach Use of ‘Break’ Card

 Take data on how long student can sit and

work before trying to get up and leave.
 Prepare a ‘Break’ card
 Stop him from working BEFORE he decides
to get up, give him the Break card. Prompt
him to use it before he gets up. Tell him he
has a break for xx minutes.
 When he has the concept, give him xx break
cards per lesson/ hour of work, etc.
 Respect the use of break card within reason
Teaching “Break”
 Independence
“Parents of children with autism need to
realize and accept that they will be parenting
for a lot longer than parents of
neurotypicals.”
Zosia Zaks, Life and Love

“This morning I ran a bath. I then announced

to my husband, Chris, that I could run baths.
I’m 43. I have been trying to run baths for 28
years.”
Donna Williams, blog.donnawilliams.net/
 Independence

“I learned responsibility by:

1. helping the coaches at my school,
2. having a baby brother to help raise, and
3. Mom giving us chores to do.”

Michael Crouch, College Postmaster,

Crown College of the Bible
 Independence
 Important goal, but may take longer than
expected
 Sensory processing challenges
 Parents need to realize they may be parenting
longer than for neurotypical children
 For many, skill acquisition came later in life
 Window of opportunity for learning never closes
 Greatest challenges reported to independence
were ‘executive functioning’ (getting and
staying organized) and sensory processing
 Social Relationships
“Even from a young age, I remember wanting
desperately to have a revered place in others’
hearts, a desire largely incompatible with
having heavy fear in my own heart.”

- Sean Barron in Unwritten Rules of Social Relationships:

Decoding Social Mysteries Through the Unique Perspectives
of Autism by Temple Grandin PhD, and Sean Barron
 Social Relationships
‘As long as things followed the set of rules I could
play along. Rules were -- and are -- great friends
of mine. I like rules. They set the record straight
and keep it that way. You know where you stand
with rules and you know how to act with rules.
Trouble is, rules change, and if they do not,
people break them. I get terribly annoyed when
either happens. Certain things in life are givens.
‘Thank you’ is followed by ‘You are welcome.’…
…You hold doors open for other people. The elderly
are treated with respect. You do not cut in front of
other people, you stay in line and wait your turn.
You do not talk loud in libraries. Eye contact is
made when you talk to someone. The list goes on,
but the intent never changes: rules are maps that
lead us to know how to behave and what to expect.
When they are broken, the whole world turns
upside down.’

  Liane Holliday Willey - Pretending to be Normal: Living with Asperger’s

Syndrome
 Social Relationships
“For communication and relationships, I do have to
thank the girls! I did have trouble with public
speaking, speaking too fast/too low, eye contact,
and stuttering. … I did not have a voice you would
want to listen to. When I was a teenager, at
church we started to a teen choir to sing once a
week. I did not want to get it in. I knew I had no
voice and I was scared to get in front of people. I
had 5 girls in particular who spent every week for
2 years encouraging me to sing in the teen choir.
They were persistent.”
Michael Crouch
 Social Relationships
 Many want friendships, but don’t know how
to go about it
 Sensory processing challenges
 Concept of different types of relationships
and appropriate conversation/behaviors
does not come naturally and must be taught
 Teaching INTERdependent skills very
important - this is how our society works
 This means teaching them how to ask for
help, how to network
 Relationship Boundaries
 Different relationships, different boundaries
 Appropriate types of conversation and behavior
for each type of 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
 Teach ‘Go Away’

 Position yourself between favorite TV

video and child.
 He must push you away to see screen
 Pair action with ‘Go Away’
 Self Advocacy
“Self-advocacy and disclosure are inexorably linked
because the need for self-advocacy begins when
a person’s needs are not being met in a given
situation. Part of self-advocacy involves educating
others of one’s needs, and that usually includes
reasons why; hence disclosure. The challenge is
to accomplish this self-advocacy and disclosure in
a way that promotes better mutual understanding,
and therefore benefits all involved. For example
after telling my wife why the ticking of an alarm
clock was so troubling, she was able to have much
greater empathy for my situation and remove the
offending device.
Stephen Shore, Ask and Tell
 Self-Advocacy
“ Self-advocacy is a topic I find very extremely
important because it is so rarely thought about
and discussed. I have had to learn self-
advocacy skills the hard way, and I do not
want that for my younger peers. I find myself
frustrated by parents and professionals who
prefer to strive for ‘indistinguishable from
peers’ rather than self- sufficiency.
Independence does not and should not have to
equal typicality, but in so many people’s eyes,
the two are synonymous.”
Kassiane Alexandra Sibley , Ask and Tell
 Self Advocacy
 Entails a certain amount of disclosure
 Most believe that teaching young children to
speak up for themselves is the most
important gift we can give them
 Starts when little by teaching them to make
choices - i.e. in restaurant to be specific
about what they want
 Teach how to ask for help when little
 Earning A Living
‘Work is more than just a livelihood or
paycheck; it is the key to a satisfying and
productive life. For many on the autism
spectrum, it is the glue that keeps our lives
together in an otherwise frustrating and
sometimes confusing world. Certainly, my
life would not be worth living if I did not have
intellectually satisfying work.’

Temple Grandin, Developing Talents

 Earning a Living
“My first goal for 11th grade is to run my own business. I
have started performing my comedy at different
venues around the country, including at many autism
conferences. Sometimes I do this as a community
service and sometimes I get paid for my presentations
and performances. I’m now beginning to learn some
basics about small in how to write a business plan,
keep books, manage a bank account, book flights and
make hotel arrangements. They’ll also be supporting
me in managing my time and prioritizing tasks as I
prepare for my presentations and performances.

Elijah Wapner, student

 Earning a Living
“I have had two small businesses to earn
money. I saved the money to get my
assistant dog, Handsome. I want people to
know you can develop the business you
want, when you have the courage, and the
time, to dedicate to the things you like in life.
My first business was delivering sandwiches
to staff on Fridays at my high school. I got
the sandwiches from Jimbos for a dollar less
than I sold to the teachers. So I made a
dollar on each sandwich…
…I started a business selling flowers to
students at my high school at lunch time on
Fridays. The hardest part of the business
was getting help with putting the flowers
together. It was difficult because being
disabled I needed a lot of help. The easiest
part was picking out the flowers. The best
part about the business was getting stopped
by other students at recess to see if I was
selling flowers for lunch.”
Jeremy Sicile-Kira, student
 Earning A Living
 Major concern for most
 Life skills discussed earlier impact tremendously on a
person’s ability to find, get and keep a job
 Many people continue to be unemployed or
underemployed
 This means we need to re-think our approach of how
we are preparing/ transitioning our students into adult
life
 Important to develop their talents / passions into jobs
or careers
 Self employment or job carving options for some
 Look at needs in the community and create a business
that fulfills a service need
 Closing Comment
“Recently one morning I opened the door to
Jeremy’s room so Handsome (Jeremy’s assistant
dog) could jump on the bed and wake Jeremy up
as usual. When I saw Jeremy about ten minutes
later, he was grinning ear to ear. “Jeremy,” I
asked, “Why do you have such a big smile on your
face this morning?” Jeremy replied, “Because I
had a nice dream.” “Oh, what was it about?,” I
asked. “I dreamed I could talk, but then I
remembered I couldn’t,” Jeremy answered. “That
sounds sad, so why are you smiling?,” I asked.
Jeremy replied, “Because then I remembered I
could write.”
Chantal Sicile-Kira, Autism Life Skills
Based on Book:
Autism Life Skills : From Communication and
Safety to Self Esteem - Ten Essential Abilities Your
Child Deserves and Needs to Learn (Penguin)

Contact Information for Chantal:

www.chantalsicile-kira.com
sicilekira@mac.com
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