SOLANA BEACH: Nonverbal autistic student to give commencement address

Torrey Pines’ Jeremy Sicile-Kira clears big hurdles on road to graduation

Published on the front page of The North County Times


Most people would consider scaling Mount Everest or winning a Nobel Peace Prize an impressive feat, but Jeremy Sicile-Kira —- who was diagnosed at age 3 with severe autism —- is scaling heights that are equally impressive.

On Friday, the 21-year-old is set to become the first nonverbal autistic student to receive a full academic diploma from Torrey Pines High School, San Dieguito Union School District officials said.

He will also give the school’s commencement address, which has been prerecorded using a computer voice generator that translated his typed speech into an audio file burned onto a CD.

Sicile-Kira communicates by using what is known as Rapid Prompting Method, a system that requires intense focus and participation by aides or other caregivers to keep him on task.

In Sicile-Kira’s case, his mother, Chantal, and aides use prompts —- snapping their fingers or pointing at familiar objects —- as they ask questions.

He then points with one finger to a letter board or keyboard to spell out his answers.

“My mom tells me that no one is better than anyone else,” Sicile-Kira said in an interview last week, using his laminated keyboard, and assisted by his mother. “We know that we should try our best.”

Autism is a range of complex neurological disorders characterized by social impairment, communication difficulties and repetitive behavior patterns, according to the National Institutes of Health.

Many people with autism are diagnosed as toddlers. In severe cases, children with autism appear to be locked in their own worlds, unable to communicate.

Chantal Sicile-Kira said her son began showing signs of autism when he was 9 months old.

“He didn’t move. He didn’t develop right away,” she said. “I had to fight to find out about Jeremy’s condition.”

In the years since, she said, her son has gone through home schooling, special education and many different therapies, but couldn’t spell out words until he was 14 years old and began learning RPM.

“I really believe in the impossible,” she said.

At Friday’s commencement ceremony, Sicile-Kira —- decked out in cap and gown —- will deliver his speech to 619 fellow graduates.

His sister, Rebecca, 18, is graduating earlier Friday from Canyon Crest Academy and will be in the audience during the 4 p.m. Torrey Pines ceremony.

“The staff and the students know him so well —- they’ll be encouraging him,” she said about her brother’s participation in the event. “I think people will be proud of him when he delivers the speech.”

Bruce Cochrane, executive director of student services for the San Dieguito Union High School District, has worked with Sicile-Kira for the past three years and is just one of the many people who helped him reach this goal.

“Jeremy is an incredible young man,” Cochrane said. “I think as he has matured, his skills and talent have flourished. (He) has been able to communicate at a greater level and really show people his intelligence.”

Sicile-Kira is able to earn his diploma under a state law that gives special education students until age 22 to do so.

He completed the necessary course work and passed the California Exit Exam on his first try.

Sicile-Kira’s mother said she never believed the naysayers who told her when the boy was young that he would have few options in life.

“Once they diagnosed him, I was told to find him a good institution,” she said. “And I have —- it’s called college.”

In the fall, Sicile-Kira will enroll at MiraCosta College in Oceanside, with an interest in journalism; he hopes to write for the college newspaper.

Until then, his summer plans include financing a two-week trip to New York City. He also plans to publish his first book and establish an online newsletter geared toward helping families understand children with disabilities such as autism.

“I think I greatly inspire others by my ability to continue to learn and not give up on my dreams,” he said.

An author, speaker and autism expert, Chantal Sicile-Kira is working on her fourth book on autism and says she has learned much from her son in the years since his diagnosis.

“We raised him to never feel sorry for himself,” Chantal Sicile-Kira said. “He’s a big inspiration to me. He has taught me patience and has actually made me into a stronger person.”

The message Sicile-Kira wants to convey to the class of 2010 is to focus on a goal and never give up on yourself.

“When I first arrived, I had no way to communicate,” he said. “But over the years, I learned how to spell, and my life changed from one of loneliness to one of having great teachers and an education.”

Inspirational autistic TPHS student graduates, will deliver a commencement speech

Carmel Valley News, June 10, 2010

Inspirational autistic TPHS student graduates, will deliver a commencement speech

By Karen Billing

Jeremy Sicile-Kira is autistic and cannot speak, but that does not mean he has nothing to say. After seven years at Torrey Pines High School, he has earned his high school diploma and will deliver a commencement speech to his classmates through voice-assisted technology at the June 18 graduation ceremony.

“I am nervous but very touched that I am giving a speech,” said Jeremy, using a letter board to spell out his words. “I want to tell them never give up on your dreams.”

To graduate high school Jeremy, 21, has taken units in mainstream general education classes as well as in his severely handicapped classes with Allen Gustafson, whom Jeremy said is the “best teacher.” He does all the same work as his regular education peers, he just gets more time to do it. He passed his California High School Exit Exam on the first try and will attend MiraCosta College in the fall to study communications.

Next week he will graduate on the same day as his sister, Rebecca, a senior at Canyon Crest Academy.

“I was pretty amazed,” said proud mom Chantal, who never even expected it would be possible for Jeremy to earn his diploma, let alone with a 3.5 GPA.

Along the autism spectrum, every child’s symptoms are different. Although Jeremy can say a few words, he has never been able to speak. In a speech written for an autism conference, Jeremy explained how his autism affected his vision, hearing and motor skills.

He said he had to learn how to hear, how to know which noise to pay attention to and distinguish when someone was speaking to him. He had to learn how to focus to be able to see.

“If I don’t concentrate, the world seems surreal,” Jeremy said.

He encourages fellow autistic children to be patient with treatment and learning methods and to learn to read because “when you can read the world is yours.” He tells them not to worry about what they look like when they are “stimming,” a method of using repetitive motion to keep focused. It is more important to be present than to worry about what other people see, he said.

Jeremy needs support and help from his family and teachers to accomplish schoolwork, but he has never needed to be motivated to learn. He thinks knowledge is important; he loves math even though it is challenging to have to spell out how to solve each problem and he especially loves to write.

“My mom is really nice because she made me realize I could learn,” Jeremy said.

Gustafson, Jeremy’s teacher for four years, turned to Jeremy’s mother Chantal to find out what she was doing at home that could help in the classroom.

“I just kept on giving him words of encouragement and kept on sticking to the plan,” said Gustafston, who left Torrey Pines in 2008 for Eastlake High.

He said sometimes there were hard days, sometimes the methods worked and sometimes they didn’t. But Jeremy wanted to learn as much as possible.

“It was great for him to believe in himself and that education is a value and something to work at…He wanted to show people he wasn’t dumb, that he knew just as much as the person sitting next to him in high school.

“I’m immensely proud of him,” Gustafson said.

Jeremy stresses there is hope in autism, but that nothing will matter if the person doesn’t believe in themselves.

Spreading his inspiring message of hope was only possible after Jeremy found his voice.

To communicate, Jeremy uses a litewriter. He types in sentences and the machine verbalizes his words for him. Scattered throughout the house and in his backpack for school are letter boards which Jeremy uses to spell out words to his family and friends.

To present his commencement speech he will use his laptop’s TextAloud software which takes his writing and converts it into speech—he uses the same program to speak at schools and conventions.

Jeremy has really only been able to communicate with his classmates for the last two years with the litewriter and he said it has changed his life. Before, he has said he felt like he was “imprisoned in darkness.” Now he has friends and like any high school student, swaps messages on Facebook.

The friendships he was able to make were very meaningful and he said what he will miss most about Torrey Pines is “the way I was accepted by everyone.”

Jeremy’s message to others is always to follow their dreams and he’s already accomplished one of his dreams: to earn his diploma. His second big dream is “to make money.”

As he loves to write, he is working on getting a book published and wants to start an online newsletter to “create awareness and answer questions” on autism. To make a living, he will look for sponsors and advertisers on his site and is working on getting more speaking engagements to share his words.

Most of Jeremy’s writings always lead toward the inspirational and one of his personal heroes is Helen Keller.

“When Helen Keller grew up she graduated from college, became an author and an advocate for people with disabilities,” he wrote. “I hope to follow in her footsteps.”

“THE STATE OF THINGS” North Carolina Public Radio station WUNC

Click here for a link to the radio show

The program is “The State of Things” on North Carolina Public Radio station WUNC.  Longtime NPR correspondent Frank Stasio hosts the program, which  this time  focused on autism.

The way Franc Stasio introduced me is a description I think describes what all autism moms and dads tend to be – strategists:

“… Jeremy is almost 22 now and  he is thriving thanks to an army of experts whose chief strategist and leader of the troops is his mother.” Frank Stasio, host of radio show ‘The State of Things” on WUNC, North Carolina Public Radio, April 2010.

I was on a panel that will include  Autism Society of North Carolina  spokesperson David Laxton; and a representative of the North Carolina TEACCH program, and Daniel Coulter.  TEACCH stands for “Treatment and Education of Autistic and related Communication Handicapped Children” and is associated with the North Carolina School of Medicine.

Chantal Sicile-Kira on “It’s Your Call”

This is a few minutes of footage from a KVCR TV show I was on in April 2006 to promote Autism Awareness. It was an hour show where we answered questions from callers. The producer and moderator is Lillian Vasquez of KVCR, and the other guest is Patty Gross Founder of Northstar (where  Jeremy’s  assistance dog, Handsome, came from). Lillian has produced a few shows on autism creating great community awareness.

Autism study retraction opens conversation

Autism study retraction opens conversation

by Jackie Johnson on February 5, 2010

in Children & Families,Health & Medicine

A medical journal this week retracted a study it published in 1998, saying indications of a link between the MMR vaccination and autism were false. Autism author Chantal Sicile-Kira reacts to that retraction, saying it’s kind of a setback and a disappointment, but it doesn’t answer any questions.  Sicile-Kira says the back-pedaling highlights the fact that more studies and research needs to be done to find out what causes autism. She first looked at this issue very closely when she wrote her first book, Autism Spectrum Disorders, which won the outstanding literary award from the Autism Society of America in 2005, at which time she says there were relatively few people talking about the connection between vaccines and autism.The autism expert, parent of an autistic child, and author is in the Milwaukee area presenting a workshop on what to expect during an autistic child’s adolescence.

NOTE: The session will be from 9 a.m. to 3 p.m. Friday at Country Springs Hotel Conference Center, 2810 Golf Road, Waukesha.

NOTE: Chantal Sicile-Kira has a book coming out “41 Things About Autism” in March-April 2010 that will answer the most common questions that people ask her about autism and having a child with autism. She’s also promoting a new biographical HBO movie about her close friend Temple Grandin, who is a very popular autism activist, who also has the disease.

Dads with autistic children get a place to learn, brag and vent

Husband noticed that no men showed up at an awareness group started by his wife

This article originally appeared in the Chicago Tribune
By Rex W Huppke
September 15, 2008

James Harlan quickly saw good coming from the autism awareness program his wife started in west suburban Proviso Township. But as the group—aptly named The Answer Inc.—grew larger, Harlan noticed something missing at its meetings.

“Where are the men?” he asked his wife, Debra Vines. “Where are the fathers? It was all women.”

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Families seek autism answers

Conference brings parents together

By Rex W. Huppke
Chicago Tribune
Published Sunday, May 27, 2007

Shawn Dennis, the father of two autistic children, came from Ohio to Rosemont this Memorial Day weekend seeking what most parents affected by this enigmatic disorder hunger for: hope.

At a conference called “Roadmap to Recovery,” organized by the national advocacy group Autism One, hope came in a dizzying array of treatments and products, from portable hyperbaric chambers, omega oils and potent
vitamin supplements to acupuncture and infrared saunas aimed at sweating out toxins. There were booths offering sailing therapy, auditory integration training and tips on gluten-free cooking.

Continue reading »

Growing Up With Autism

Teenagers and young adults are the emerging face of autism as the disorder continues to challenge science and unite determined families.

By Barbara Kantrowitz and Julie Scelfo


Nov. 27, 2006 issue – Chicken and potatoes. Chicken and potatoes. Danny Boronat wants chicken and potatoes. He
asks for it once, twice … 10 times. In the kitchen of the family’s suburban New Jersey home, Danny’s mother,
Loretta, chops garlic for spaghetti sauce. No chicken and potatoes, she tells Danny. We’re having spaghetti. But
Danny wants chicken and potatoes. Chicken and potatoes. His 12-year-old sister, Rosalinda, wanders in to remind her
mother about upcoming basketball tryouts. His brother Alex, 22, grabs some tortilla chips and then leaves to check
scores on ESPN. His other brother Matthew, 17, talks about an upcoming gig with his band. Danny seems not to
notice any of this. “Mom,” he asks in a monotone, “why can’t we have chicken and potatoes?” If Danny were a
toddler, his behavior would be nothing unusual. But Danny Boronat is 20 years old. “That’s really what life with autism
is like,” says Loretta. “I have to keep laughing. Otherwise, I would cry.”

Autism strikes in childhood, but as thousands of families like the Boronats have learned—and thousands more are
destined to learn—autism is not simply a childhood disorder. Two decades into the surge of diagnoses that has made
autism a major public health issue, a generation of teenagers and young adults is facing a new crisis: what happens

As daunting as that question may be, it’s just the latest in the endless chain of challenges that is life for the dedicated
parents of children with autism. Twenty years ago, they banded together—largely out of desperation—to raise
awareness of a once rarely diagnosed, often overlooked disease. They are united by the frustration of dealing with a
condition that has no known cause and no cure. They have lobbied passionately to get better education for their kids
and more money for research into autism, a neurological disorder characterized by language problems, repetitive
behaviors and difficulty with social interaction. At the same time, more sophisticated epidemiology has revealed the
true magnitude of the problem. Autism is now estimated to affect from one in 500 to one in 166 children—or as many
as 500,000 Americans under 21, most male. That includes individuals with a wide range of abilities—from socially
awkward math whizzes to teens who aren’t toilet trained—but who all fit on what scientists now consider a spectrum
of autism disorders.

The culmination of much of this parental activism is the Combating Autism Act, which was pushed by a collection of
advocacy groups like Cure Autism Now, led by Hollywood producer Jon Shestack and his wife, Portia Iverson; Autism
Speaks, started by Bob Wright, CEO and chairman of NBC Universal, and the Deirdre Imus Environmental Center for
Pediatric Oncology. The bill unanimously passed the U.S. Senate in August but was blocked in the House by Texas
Republican Joe Barton, chair of the House Committee on Energy and Commerce. In a September meeting, Barton told
autism activists that he would continue to oppose their legislation, which earmarks $945 million for research over the
next five years, because it conflicted with his own proposal to reform the National Institutes of Health. As a result,
autism advocates began inundating him with faxes and phone calls and lambasting him in the press. To advance the
cause of research, radio host Don Imus joined in and pressured Barton on the air, calling the congressman, among
other things, “a lying, fat little skunk from Texas.”

Now that the Democrats have won the House, Barton will lose his chairmanship in January and NEWSWEEK has
learned that he is attempting to pass a compromise version of the bill before then. If passed, the House bill would
fund a new push for early diagnosis, which is critical to starting therapy as soon as possible. In a particular victory for
parents, the legislation specifies that the research oversight committee should include at least one person with autism
and a parent of a child with autism.

The House bill authorizes money for research into many questions, including whether environmental factors may
trigger autism. One point of contention: the Senate bill mandated a specific amount of money for the NIH to research
the role environmental factors might play in causing autism. But Barton resisted, and now the specificity about how
much should be spent and where has been lost in the compromise version. Still, a Barton bill could come up for a vote
as early as the first week in December and the legislation, says Alison Singer, the mother of a daughter with autism
and an executive at the advocacy group Autism Speaks, “is probably the single most important thing that could
happen besides the cure.”

A win in Washington may lift their spirits, but a legislative victory won’t really change much for the Boronats and
others like them. Some kids have made dramatic progress after intensive physical and behavioral therapy; many
others still struggle with basic activities. Often, when lower-functioning young people reach 18, their parents will
establish legal guardianship to protect them. But no matter what level they’ve reached, many will need help for the
rest of their lives. Most government-sponsored educational and therapeutic services stop at the age of 21, and there
are few residential facilities and work programs geared to the needs of adults with autism. “Once they lose the
education entitlement and become adults, it’s like they fall off the face of the earth” as far as government services are
concerned, says Lee Grossman, president and CEO of the Autism Society of America, a major national-advocacy

According to the Harvard School of Public Health, it can cost about $3.2 million to care for a person with autism over a
lifetime. Caring for all persons with autism costs an estimated $35 billion per year, the same study says. Families with
limited financial resources are particularly hard hit. Other chronic diseases like diabetes are covered by insurance. But
parents of youngsters with autism “have to navigate a maze and, if they find providers, then they have to figure out
how to pay for it,” says Singer. Grossman’s early wish for the Combating Autism Act was that it would address the
dire needs of autistic adults, and he drafted 30 pages of service-related issues. But that part was never introduced
because a consortium of activists working on the bill concluded, for the sake of political expediency, that the bill
shouldn’t try to take on too much. In this light, restraint seems especially critical now, when the Iraq war has
siphoned off so much federal money. “It’s like a forest fire running through science and it burns a lot of trees down,”
says Dan Geschwind, a UCLA neurogeneticist. However, advocacy groups vow that the moment the bill passes,
government funding for adult services will become their next priority. Wright believes there is substantial
congressional support for this, possibly from Sen. Hillary Clinton.

Moving through adolescence to adulthood is never easy, but autism transforms even the most routine activities into
potential minefields. Recognizing the norms of teen behavior can be a Sisyphean task. Helen Motokane’s daughter,
Christine, 14, has Asperger’s syndrome, a high-functioning form of the disorder. She struggles to fit in at her Los
Angeles public school—and that means hiding parts of her true self. One secret: she loves Barbie. “She knows it’s not
cool to wear clothes with Barbie logos, so she tries to keep that at home,” says Helen, who gently prods her daughter
into developing more mature interests. “She says, ‘You’re trying to make me grow up, aren’t you? You want me to do
all these things right away.’ I go, ‘No, no, no.’ I reassure her that we’re not trying to push her.” But an hour or two
later, her mother says, Christine will ask, “Is it OK if I like Disney Princess even though other kids my age don’t like

Keri Bowers of Thousand Oaks, Calif., says her son, Taylor Cross, 17, seems perfectly normal at first. But sometimes
he’ll just blurt out what he’s thinking without any internal censorship. Passing a stranger on the street, he might say,
“You’re in a wheelchair!” “When you’re socially odd, people are afraid,” Bowers says. “They want to get away from you
and cross to the other side of the street.” Not surprisingly, Taylor had no friends at all in the public school he attends
until he began to meet other teens with autism—young people his mother describes as equally “quirky.”
In one way, he’s not quirky at all. “He’s attracted to girls,” Bowers says, “but he’s shy. He doesn’t really know how to
talk to them.” A few months ago, he asked out a girl from his school who does not have autism but who had been
friendly to him. Bowers had a psychologist friend shadow the couple at the movies. “Taylor only spoke about subjects
he was interested in,” Bowers says. “He wouldn’t do a reciprocal back-and-forth conversation on topics about her.”
Still, when Bowers later asked if he wanted to kiss the girl, Taylor surprised his mother with his sensitivity. “He said,
‘Yes, but she’s very religious and I would never do that’.”

As young people with autism approach adulthood, some parents can’t help but feel the huge gaps between their
child’s lives and others the same age. “It’s very hard, especially in our competitive society where people strive for
perfection,” says Chantal Sicile-Kira, whose son, Jeremy, 17, can communicate only by pointing to letters on an
alphabet board. The San Diego resident hosts “The Real World of Autism With Chantal” on the Autism One Radio
Internet station and wrote “Adolescents on the Autism Spectrum” (Penguin, 2006). Like many youngsters with autism,
Jeremy finds new environments difficult. “If he walks into a new store,” his mother says, “and there’s horrendous
fluorescent lighting, within 10 minutes I’ll look down and he’s starting to wet himself.” Despite such challenges, Sicile-
Kira plans to help Jeremy live on his own when he’s an adult—perhaps rooming with another young person with

Independent living is a major goal of many families and, with the help of therapy, thousands of youngsters who in
earlier generations would have been consigned to institutions are now going to college and looking forward to a
normal life with a job. But for every one who makes it, there are many more young people like Danny Boronat, who
has come so far and yet still faces much uncertainty. Once unable to utter a sentence, Danny now reads at a secondgrade
level, competes in the Special Olympics and willingly takes on household chores like loading the dishwasher.
But he also can spend hours playing with water. He picks obsessively at his cuticles, and sometimes cuts himself (his
mother tries to hide any scissors in the house). He has no close friends. Next year he’ll turn 21 and will no longer be
eligible for the workshop where he does simple assembly-line work three days a week. After that? No one knows, not
even his parents. “It’s terrifying,” says his mother, who started her own charity called DannysHouse to focus on

A few states like California and Connecticut, newly aware of the crisis, have launched efforts to meet adult needs. But
until programs are widely available, families are left to cobble together a patchwork of solutions—from informal day
care to hourly caretakers to private residential programs. But these are stopgap measures. Parents worry that they
will run out of money to pay for these services—and that they won’t be around forever to arrange them for their

It’s understandable that these parents would feel distraught. Many adults with autism require so much special care
that it’s hard to imagine anyone but a loving family member willing to provide it. “My wife and I are concerned about
what’s going to happen to our son when we pass on,” says Lee Jorwic, whose son Christopher, 17, is unable to speak
even though he’s been in therapy since childhood. At 6 feet 4 inches and 290 pounds, Christopher is “our gentle
giant,” his father says. But because of his disabilities, even the most routine tasks require extraordinary preparations.
Two years ago, for example, Christopher got an eye infection. He couldn’t sit still long enough for the doctor to
perform an exam so he had to go under anesthesia twice “just so the guy could look in his eye,” his father says.
Grossman says the Autism Society gets hundreds of calls every day from families like the Jorwics. “The most
distressing, most disheartening, are from parents of older kids, parents who are at the end of life,” he says. “They’ve
been fighting this all their life, and they don’t have a place for the kid after they die.”

The natural successors to parents as caretakers would be siblings. Some families feel that’s too much of a burden;
others say that’s a natural part of life in a family with autism. When one sibling has autism, the needs of so-called
neurotypical children may seem to come second. Beth Eisman of Potomac, Md., recently sent her oldest daughter,
Melanie, 18, off to college. Her goal for her younger daughter, Dana, 16, is more basic: independence. Dana’s
tantrums limited the family’s participation in Melanie’s school activities. “The old days were pretty bad,” Eisman says.
“Melanie often took the brunt of it.” Now that Melanie is gone, Dana feels the loss. Eisman says Dana often goes into
her sister’s room and says, “I want Melanie.”

Many families are sustained knowing that, by raising awareness of autism, they have already given their children the
gift of a meaningful identity. “If this was 10 years ago, my daughter’s classmates might say she’s the one who talks to
herself all the time and flaps her hands,” says Roy Richard Grinker, an anthropologist at George Washington
University and father of Isabel, 15. “But if you ask these kids in 2006 about Isabel, they say she’s the one who plays
the cello and who’s smart about animals.” Inspired by his daughter, Grinker explored autism in different cultures for
his book “Unstrange Minds: Remapping the World of Autism” (Basic Books, 2007). “The more peers of the same age
group understand about autism, the more likely they are to be kind, caring and integrate them into community life.”

Twenty years ago, that kind of acceptance was inconceivable. Autism was considered rare and few physicians
understood it or were able to help. The disorder was first identified by Leo Kanner of Johns Hopkins in 1943. About the
same time a German scientist, Hans Asperger, described a less severe form of the condition. But with the ascendancy
of psychoanalysis in the postwar years, the predominant view was that autism was a psychological disorder caused by
a lack of love from “refrigerator mothers,” a term introduced by the controversial psychologist Bruno Bettelheim. In
the 1970s, parents started pushing back against this theory and encouraging researchers to look for neurological
causes. It wasn’t until 1980 that autism became an official clinical diagnosis, separate from childhood schizophrenia or
retardation. Since that time, as scientists have learned more, they have broadened the diagnosis to include a
spectrum of disabilities. Now, they are re-evaluting it even further, considering the idea that there may be multiple

As knowledge about autism spread in the 1990s, families began to get more accurate diagnoses for children who
might in the past have been labeled mentally retarded or emotionally disturbed, and the number of cases
skyrocketed. Because of the Internet and extensive networking, parents around the country found allies and became
powerful and articulate advocates. Even longtime autism researchers say families have really led the way. “Beyond
raising awareness,” says Dr. Thomas Insel, director of the National Institute of Mental Health, “families have become
the real experts on this disorder. They have to figure out how to cope with a child who becomes explosive, disruptive,
who could have a meltdown at any moment. They become highly skilled at knowing what helps.”

Autism has set all these families on a unique journey and, while the road ahead is still unclear, they cherish small
triumphs along the way. Grinker has a Ph.D. from Harvard and, in his community, many parents dream of sending
their children to the Ivy League. He and his wife, Joyce, a psychiatrist, know that Isabel will never join them. But
raising Isabel has its own rewards. Isabel’s sister, Olivia, 13, is “like a third parent,” says Grinker. The family judges
Isabel not by the standards of others but by how far she has come. “When Isabel achieves something, I feel like we’re
a team, like we all did it, and I feel incredibly rewarded,” he says. For now, that is enough.

With Karen Springen and Mary Carmichael
© 2006

Woman shares experience with autism

The Coast News November 03, 2006
By Jeff O’Brien, staff writer

DEL MAR — The San Diego Chapter of the Autism Society of America is hosting their fifth annual conferences, Autism: Preparing for the Future, Today,” Nov. 3 and Nov. 4 at Marina Village.

Del Mar resident Chantal Sicile-Kira, an award-winning author, autism expert and mother of a 17-year-old autistic son, will be one of the guest speakers at the event.

Continue reading »

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


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 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