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