As Independent As Possible

This is an article written by Liz Breen  following the publication of my book Adolescents on the Autism Spectrum, and was published in Spectrum magazine.

Author explains making the transition  from school years to adulthood

BOOKS   by Liz BcBreen

The unemployment rate among the special needs population

has been at 70 percent for the past 12 years. This

is according to a study that was conducted by the

President’s Commission on Excellence in Special

Education in 2002. The commission gathered this data as

it was researching what works and what does not work

when it comes to transition programs.

Chantal Sicile-Kira is being proactive about bringing

this unemployment rate down among young adults with

special needs. Her company, Autism: Making a

Difference, is dedicated to preparing teens with developmental

disabilities for their futures. Every day, Sicile-

Kira is developing innovative ways to equip young adults

with the knowledge and skills they need to thrive in the

working world.

The special needs arena is familiar one for Sicile-

Kira. For almost 20 years she has been involved in the

community both as a professional and parent. While an

undergraduate, she took a job at Fairview State Hospital

working with autistic people. There she not only found

her professional calling, but she began gathering information

she would one day use in her personal life. Twelve

years after she took the job in California, her son Jeremy

was born. Eventually, Jeremy was diagnosed with autism.

Sicile-Kira had already become a strong advocate and

educator in the autism community, and she began to put

her own advice into action. Now she’s offering her years

of experience to others who do not have a handle on what

comes after early intervention.

The transition from high school to college or full-time

job placement is one of the most important in anyone’s

life. It is especially challenging for those with special

needs. Why then, do they receive so little transitional

planning? Sicile-Kira is trying to raise awareness about

this issue through the work of her company as well as

through her new book, Adolescents on the Spectrum: A

Parents Guide to the Cognitive, Social, Physical and

Transition Needs of Teenagers with Autism Spectrum

Disorders. According to Sicile-Kira, “we have to make

sure people have the right training and information out

there. People have to start thinking outside the box. We

have to start thinking about unemployment not from a

social worker mentality but from a business point of

view.” Sicile-Kira is concerned about what the lack of

training and options will mean for the “baby boom of

autism.” Currently, the largest group of children with

autism is ages 7 through 9 – about 10 years away from

attending college or entering the workforce.

Most of work that Autism: Making a Difference carries

out is based on finding a young person’s interests. For

many children with Asperger’s syndrome and autism,

there are work opportunities out there. The key is to find

what will interest the individual and then encourage the

interest in a constructive manner. Sicile-Kira cites Steven

Shore as an example of this work. Shore is a leader in the

autism community and an author. He also promotes selfadvocacy.

As a child, he was diagnosed with autism so

severe that doctors thought he should be institutionalized.

At a young age Shore began taking things apart and putting

them back together. This is how he passed many

hours. Eventually, he became so familiar with the

mechanics of certain objects that he got a job in a bicycle

shop during high school. “Somewhere along the way, he

learned to transfer these skills,” says Sicile-Kira. “I don’t

know if he had a mentor or did it by himself, but he was

able to use an interest and talent to get a job.” Sicile-Kira

has developed an effective strategy for achieving this

goal, even when it is difficult to find where a child’s

interest lies.

Jeremy, Sicile-Kira’s son has severe autism. She could

not pinpoint a certain interest Jeremy had, so she found a

need in the community. During the past school year,

Jeremy sold flowers to his peers and teachers at his high

school. In the process, he learned about profit and loss,

marketing and how to be an employer.

Every week, Jeremy collected his orders, which were

placed on Monday. Near the end of the week, he bought

flowers and prepared them for presentation. On Friday,

he delivered the orders. Because Jeremy has sensory

issues, it was sometimes difficult to work in the noisy

high school environment. When he couldn’t make his

deliveries, his aid assisted him. In essence, his aid

became his employee. The aid received payment, and

Jeremy learned that if he used the help of an employee,

he earned less money.

Sicile-Kira first came up with this idea for mentoring

towards talents when she came in contact with the creators

of IncomeLinks. Doreen Rosimos and Darcy Wilson

have developed a program to help individuals with developmental

developmental

and other challenges begin their own microenterprise.

When Sicile-Kira thought about this idea in

relation to Temple Grandin’s book, Developing Talents,

the entire concept began to take shape. When encouraged

by a mentor, someone with a developmental disability can

“find their niche” and at the same time, improve their

executive functions and build self-esteem. In fact, one of

the major impacts of her work so far is the increased selfesteem

Sicile-Kira is seeing in the people she mentors.

Her goal was to get young people into a suitable work

environment, and the increased confidence has become a

welcome by-product of her work.

Just as her company is broaching new territory, so is

Sicile-Kira’s new book. “There was a gap in information

in terms of hygiene, puberty, preparing for life. This fills

that gap” Sicile-Kira explains, “After early intervention,

the high school years are the most important and very few

people talk about it.” The author’s first book, Autism

Spectrum Disorders: The Complete Guide to Understanding

Autism, Asperger’s Syndrome, Pervasive Developmental

Disorders and other ASDs, included some information on

adolescence, “but then I realized there was so little out

there. Some kids are being cured and recovered, but the

vast majority are not.” Sicile-Kira wanted to give parents

and educators the tools they need to help children move

into the next phase of their lives after high school.

It was when Jeremy was in middle school and high

school, that Sicile-Kira found herself with little support

and few resources to assist his development. As Jeremy

moved up through grades at his school, she did not feel

he was getting the kind of guidance he needed. One of

the crucial factors in creating a future for a young adult

with developmental disabilities is to develop an

Individualized Transition Plan (ITP). These plans are discussed

in detail in Sicile-Kira’s book.

The ITP should become part of a child’s Individual

Education Plan (IEP) by the age of 16, Sicile-Kira

explains. “The ITP is the ‘business plan’ for the teenager’s

life. The mission statement should reflect the student’s

dreams and aspirations. The goals should tell you

how to get there and what is needed to make the dream a

reality.” The ITP should include plans for what students

are learning in the last years of high school and what

agencies will help him achieve his or her goals after high

school. “It’s important for parents to recognize that this is

a very important tool,” says Sicile-Kira. “I realized that a

lot of parents just didn’t know about it. When children

graduate, they might have a diploma, but many do not

have the life skills they need.”

Another facet of the ITP is living arrangements.

Parents need to consider the future and children need to

learn the life skills they will need to function in whatever

kind of living arrangement they choose for themselves,

according to Sicile-Kira. Ideally, every child should be

given the tools needed to become as independent as possible.

All of this information can be captured in an ITP, and

the goals of the IEP should be written towards the ITP.

It is also important to allow a child to have as much

input as possible when it comes to the ITP. If he or she

has any interests or hobbies that may lead to a job after

school, or has an idea as to what kind of job they want, it

should be noted in the plan. If a child does not know,

assessments should be done in order to pinpoint his or

her interests.

In addition to many parents not knowing about the

ITP, Sicile-Kira feels the ones who do often do not know

what question to ask. “Everyone talks about early intervention,

but people are not focused on the future. When

they are young, parents of course should be focused on

getting them better, but at some point, you might realize

that your child is not going to recover completely.” Sicile-

Kira adds that this is not to say that children ever stop

learning or that parents should give up. But, if recovery

never occurs, parents need to find a way to help their

children lead a fulfilling life.

Sicile-Kira says that feedback on the book has been

positive. Parents say they glad to finally have a resource

that deals with their main concerns. For many, these

include creating a meaningful ITP and planning for the

future. Another major concern for parents is how to

address hygiene, puberty and sexuality. In her book,

Sicile-Kira addresses these topics in a straightforward

and open manner. “All children nearing adolescence

need to have an understanding of what is going on in

their bodies and how to take care of themselves. Children

with ASDs need even more information and input from

parents at this time, and need to be taught specifically

about puberty and all it entails.” The author goes on to

explain how to teach your child about his or her body

while considering their chronological age and maturity

level. She offers areas of discussion that can be simplified

or built upon, depending on what your child already

knows and how he or she communicates.

An essential aspect of raising a child with developmental

disabilities is to teach them to be as independent

as possible, according to Sicile-Kira. An important part of

this task lies in teaching your child about good hygiene.

“Cleanliness is a contributing factor to self-esteem,” says

Sicile-Kira. “Most tweens and teens on the autism spectrum

do not independently learn what they need to know about hygiene

and self-care. Although it is best to start

teaching about hygiene, health, and self-care before

puberty, it is never too late. The goal is to teach teens to

be as independent as possible in these areas.” Sicile-Kira

suggests several ways to teach your child hygiene skills.

One is to make a schedule of when and where self-care

should take place. The author also discusses how to teach

these skills when your child has difficulty with sensory

issues. Another topic on which the author advises parents

is the necessity of teaching your child about relationship

boundaries. Often, children on the spectrum have

been taught to follow instructions – especially those

given by someone with authority. Children need to be

taught not to follow directions when they are dangerous

or inappropriate.

Whether they have a child with a developmental disability

or not, a discussion on sexuality is one that some

parents would rather leave to educators. Sicile-Kira urges

parents to take responsibility for this aspect of their

child’s upbringing. “It’s a sensitive subject because of all

the different religious, philosophical and ethical beliefs

that affect what our thoughts are on sex education and

what is taught in school and how it is taught. As parents,

you are responsible for your child’s ethical and religious

upbringing. Before teaching or explaining to your tween

or teen about sexuality, parents will need to reexamine

their own ideas and attitudes about sex, sexuality, and

what they believe teenagers should know.” Sicile-Kira

offers tips and additional resources that will help parents

have open and honest conversations with their children

about sexuality.

One of the ways Sicile-Kira is making her message

and strategies known to parents and educators is through

her Internet radio show, “The Real World of Autism with

Chantal.” The show discusses practical issues that face

parents and caregivers of autistic children every day.

Sicile-Kira interviews experts and community members,

takes audience questions and offers resources. The show

airs twice a month in English and once in French on

Autism One Radio. For more information, visit

www.autismone.org/radio. The author and advocate also

wants to start a non-profit organization that focuses wholly

on developing transitional plans for children with

developmental disabilities.

When she considers the success that she has

achieved with her son Jeremy, Sicile-Kira cites several

factors. Most importantly, she refused to believe that he

could not learn and never gave up on him. She learned

everything she could about autism, therapies and treatments.

She surrounded herself with people who

believed in Jeremy and who were interested in helping

him learn, and she never lost sight of the fact that it is

never too late to learn life skills and independence.

These tenets allow Sicile-Kira to carry out her mission

of helping her son and those she mentors to live a life

as independentl

Adapting to Autism

Carmel Valley woman’s experiences and books help other families deal
with the disorder

San Diego Union Tribune – April 2, 2006

By Ozzie Roberts
When talking about her 17-year-old son, Jeremy, who copes with severe autism, Chantal
Sicile-Kira, the author of two books on the developmental disorder, often says: “Things
happen for a reason. We all serve a purpose in some way.”
Her husband, Daniel, a quiet, soft-spoken
guy, will give you a bit of a different take.
“Why was my son born with autism? Why
did this happen to our family? I don’t know,”
he’ll say. “It’s just random selection. But
(we’ve) got to play with the cards (we’re)
dealt. That’s life.”

Clearly, Chantal, 49, and Daniel, 53, have
gone ’round and ’round about their son’s
condition.

The Carmel Valley couple have been
married for more than 27 years and lived
together all over the United States, France
and Great Britain. And together, they’ve searched the two continents in often daunting
efforts to find effective help for their son through the years.
The Sicile-Kiras get past their differences and stay united on one major consideration:
They both want the best for Jeremy and his little sister, Rebecca, 13.
So while Daniel supports the family as an architect, Chantal, who worked awhile in
recreation therapy for kids with disabilities at a state hospital, stays at home to be a buoy
for her own young.

In the course, she’s joined the executive board of the San Diego Chapter of the Autism
Society of America; she’s a national speaker for the cause; and she hosts a weekly 30-
minute Internet radio program on Autism One Radio (www.autismone.com) at 10:30
a.m. Tuesdays. Every second Tuesday of the month, she hosts a program in French at 11
a.m.

Chantal also works as a volunteer for the Autism Society, helping coordinate such events
as the organization’s sixth annual gala fundraiser – “All Out for Autism” – set for 6 p.m.
April 15 at Sea World.

Chantal wrote “Autism Spectrum Disorders” and “Adolescents on the Autism Spectrum.”
They’re two books intended to help families of autistic children guide them into living as
independently as possible and making their own informed decisions.
The books teach people about autism and about where to go to get assistance for children
– keys, she says, to coping with the disorder.

“Adolescents,” published by Perigee, a division of Penguin Group, was released last
month. Chantal celebrated with a book signing that was part of a fundraiser for the
Autism Society. It was held at the Poseidon Restaurant in Del Mar.
“Autism Spectrum,” also published in the U.S. by Perigee, and in the United Kingdom by
Random House, in 2004, won the Autism Society’s Outstanding Literary Work of the
Year Award in 2005.

She tells you that she put together the two books primarily on the strength of the
education she and her family gained through their experiences with Jeremy. “I figured if I
had all this information amassed,” she says, “why not share it? (Most) people don’t know
how to (relate to) autistic kids.”

And if the books help others, she adds, it reassures her that her family’s trials are actually
parts of the greater plan.

Jeremy is breathing testament to the positives, Chantal vows.
A junior at Torrey Pines High, he speaks very little and has even less regard for
boundaries. He’ll walk right into your personal space – much the way he did last month
when I visited his family’s home for the first time.

Gangly, with deep-set eyes, Jeremy came nose to nose with me, snatched my hat from my
head and stood, twirling it around, smiling all the while. He likes twirling things.
He’s a major pain with that, says his sister, Rebecca, only because she’s had to put up
with him twirling things out of her room for so many years.
All of that behavior is characteristic of his disorder.

But uncharacteristically, he reads and comprehends at a high school level. He types,
appreciates artistic things and displays a keen sense of the way of things.
“I remain diligent about getting what he needs,” Chantal says, “and I never let him give
up on himself. And he learns.”

With help last February, Jeremy, who goes to school every day with an aide, wrote a 21-
line autobiographical poem for a sociology class that he calls his “I Am Poem.” It’s
insightful and concludes: “Pay more attention to me and less to the label of autism. I am
unique.”

He also likes to have fun, family members agree.
“I love when he and I play games together,” Rebecca says. “I love my brother. He’s really
very nice.”

Says Daniel, his dad: “I guess I’m still making peace with his condition. But I feel a lot
better about where he’s at in his development and in the systems available for him. He’s a
kid, and it’s just been positive seeing him develop over the years.”
Chantal says she sees her son someday living away from home in a supported-living
situation.

“And I’m OK with that,” she says. “It would signal that he’s ready for as independent and
self-determined life as possible – that’s my goal for him, for all kids” with autism.

SignOnSanDiego.com News Metro — Adapting to autism